tag:blogger.com,1999:blog-6799825838471356622024-03-21T12:34:26.505-07:00The Original Dragon MotherKazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.comBlogger117125tag:blogger.com,1999:blog-679982583847135662.post-40504373652443138152021-12-02T22:24:00.001-08:002021-12-02T22:24:53.806-08:00Rheumatoid Arthritis and Disability - International Day of People with Disability<p> <span style="font-family: helvetica;">At the time I was first diagnosed with rheumatoid arthritis, I had a nine month old baby, I'd been working a part-time job, I had a contract with the local state opera chorus, and was managing a household with a largely absent husband and a primary school aged child as well as the baby. </span></p><p><span style="font-family: helvetica;">My job was as a chef. I'd left my more high powered catering job and taken this part time job cooking in a child care centre. It was close to home, I could take the baby when I went back after maternity leave, it meant I could be available for school pick ups, and it was way less pressure than the previous job. It ticked a lot of boxes. Until my hands started to fail me. Losing control of my hands meant I had 'interesting' events like watching large chef's knives flying across my tiny kitchen, having to find another staff member to operate a manual can opener for me, struggling to peel potatoes for 45 meals, and so on... </span></p><p><span style="font-family: helvetica;">Ultimately, I left that job. Managing a new, unstable disease was hard enough, without trying to do a job that was clearly aggravating the situation. That was thirty odd years ago now. </span></p><p><span style="font-family: helvetica;">I wish I had the ability now that I still had back then. </span></p><p><span style="font-family: helvetica;">I struggle with the concept of disability. My social media today is peppered with posts commemorating the International Day of People with Disability. Lots of disability pride stuff. Lots of advocacy. Lots of attention being paid to various solutions that evolved to keep people working through pandemic lockdowns that happened very quickly - thanks, technology - but that the disabled community have been requesting for decades, with those requests falling on largely deaf ears...seemingly all too hard, until the majority of society required flexible arrangements to continue working. </span></p><p><span style="font-family: helvetica;">The thing is, my life hasn't changed enormously since COVID took over the world. The last time I worked in a job that took me away from home to an outside work environment was in 2013. That's the year the disease exploded without warning, and went from being mostly manageable to being completely out of control - to the point that it landed me in hospital, almost unable to walk. I continued, at that point, with remote access, to do most of my job - even from my hospital bed. Ultimately though, with insufficient pharmaceutical interventions due to the PBS regulations that saw me waiting almost six months to begin biologic drugs, I was medically retired. They needed a warm body in the office, sitting in my chair, and answering my phone, right there... And <b>my</b> warm body could no longer be guaranteed. </span></p><p><span style="font-family: helvetica;">It's taken me some years, but slowly I've built a mixed practice of writing and art that, while it doesn't earn me enough to live on, augments household income noticeably, and gives me a reason to get up in the morning. None of that changed with COVID. </span></p><p><span style="font-family: helvetica;">As I type now, I'm reminded via the pain I'm currently experiencing, of that time back in 2013. My most recent biologic failed. It had been failing for some time, and I'd been having an ongoing conversation with my rheumatologist about what to try next. But because a new drug takes time to kick in, there was the real possibility that in that gap between stopping the old one and the new one kicking in, I'd go backwards even further. And that's where I am now. I'm two weeks in on a new biologic. I am going backwards. My days are a haze of pain and exhaustion. My sleep is patchy, interrupted by pain. I'm getting work done, but not evenly, and not enough. </span></p><p><span style="font-family: helvetica;">I currently have a swag of deadlines. Art works that are time sensitive - because, Christmas. Sewing - which I took on almost a year ago to earn some extra dollars - which is also time sensitive, for the same reason. The writing, not so much as that will tail off a little now until next year. I finished the fourth drawing in a set of four miniature works, and should be drawing in one of the other pieces awaiting attention, but, my hands are really bad. Typing is painful too, but if I splatter typos all over the place, I can fix that and no one will know they were there. If I splatter paint or coloured pencils in the wrong places on an artwork, that's a whole other matter. And there's sewing to prep too, only I can't manage the cutting out scissors today, and I can't start any of the current batch until I can cut out the fabrics. </span></p><p><span style="font-family: helvetica;">The thing is, RA is a progressive and degenerative disease. It's not curable. The only way is down. The drugs, if a combination can be found that is tolerable - I am REALLY good at adverse side effects - and that works, help slow down the progress of the disease and prevent damage. But they can't stop it. In the time up to 2013, while it was comparatively mild, I was on very little medication, apart from NSAIDs and pain meds when required. Now, I have piles of pills to chug down twice a day, and a slow release opioid patch stuck on my left shoulder that I change every three days. These meds enable me to live a relatively normal life. </span></p><p><span style="font-family: helvetica;">Except, it's not normal any more, in that I can't work. Not if working means showing up in an office at the same time every morning day after day for the whole week. My body won't tolerate that at all. It's far too unpredictable. I can't rely on it to be consistently OK. Well, I can't rely on it to be any kind of OK... </span></p><p><span style="font-family: helvetica;">What I'm dealing with is known as 'dynamic disability.' It's a relatively new term in disability speak. It refers to those of us with chronic illnesses that cause unpredictable ups and downs of wellness. We have days where we can manage to do most of the stuff we might want, or need, to do. And then we have days when we're on the couch. In between, there are the days recovering from those days we did stuff... </span></p><p><span style="font-family: helvetica;">Last week, I had a morning when I woke up and tried to get out of bed, only to discover that one hip had decided overnight that not working at all would be a fun game to play. It took me a very long time to get to the point of sitting on the edge of the bed. Then I had to figure out how to get out of the bedroom - the pain in my hip when I put weight on that leg was excruciating. The nearest walking stick was folded up on shelves in the front hall, about six or seven metres away. The bathroom was another six, the kitchen seven or eight more, and the living room and its couch, a further eight or so... I did get there, eventually, and incredibly painfully. And added extra painkillers to the eggcup of morning meds, then jammed a hot wheatbag between my hip and the back of the couch, exhausted, waiting for the painkillers to kick in.</span></p><p><span style="font-family: helvetica;">If I'd had to have been anywhere early that day, I'd have been in real trouble. Dragon Dad is working night shift at the moment, so although he was at home, he was asleep. I'd have woken him had it been an emergency. But it wasn't. It was just a bad day, when the RA bit me hard enough to remind me that I now live with a disability. A disability that doesn't play fair - ever. A disability that changes unpredictably. That one day lets me get out of bed, albeit stiff and sore...but then the next day makes that an almost impossible challenge. </span></p><p><span style="font-family: helvetica;">Most of the people I know with diseases like mine also struggle with the idea that we're disabled. Most of us tend to keep pushing ourselves to manage, adapting and working around the pain, the stiffness, the joints that don't work properly, the fatigue and the brain fog. But we resist labelling ourselves as disabled. </span></p><p><span style="font-family: helvetica;">Why? There's no shame in being disabled. Well, there shouldn't be. The lived experience can be very different though, for many people. I have been very fortunate, in the scheme of things. I have skills I can use to create work for myself. I have a partner who earns enough to support us both. The money I earn covers most of my personal expenses, and sometimes can add to the household kitty. There's no denying though, that our lives would be easier if I could just go out and get an actual job. At the same time, we both know that that's not physically possible for me now, because where are the employers who will take on someone who can't be counted on to turn up each day, and be well enough to stay all day?! They don't exist. Neither do the jobs. </span></p><p><span style="font-family: helvetica;">So, on this International Day of People with Disability, I'd like to offer a shout out to the people who, like me, have autoimmune diseases that tease them with good days that let us think we're still normal, only to bring us crashing down with flares that leave us on the couch for days in a haze of extra painkillers. I see you. I understand the difficulty of claiming that disability label. I understand the conflict you may feel when you see other people with disabilities talking about disability pride, and loving their disability. The people who don't want to be 'cured' of their disability. I see them too. And I'm accepting of the fact that their stories are different. That they're absolutely right to be proud of the people they are. </span></p><p><span style="font-family: helvetica;">But, if someone comes up with a cure for RA, believe me, I'll be lining up for it. </span></p><p style="text-align: center;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr1vj1wV3jtpIavtpHB7Z6nTxRXpByV_AZQme2cSwDPZ4l86wlNwMnELV7OmxiP2YPTIF4OTIhd1Z5TnHZuJNQhVUFgdg664A0rqYUp6C57kcu3auyJ86MpHUChCCKcQ3W8rPPDCm7PEae/s2048/Bouquet21221.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="2048" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr1vj1wV3jtpIavtpHB7Z6nTxRXpByV_AZQme2cSwDPZ4l86wlNwMnELV7OmxiP2YPTIF4OTIhd1Z5TnHZuJNQhVUFgdg664A0rqYUp6C57kcu3auyJ86MpHUChCCKcQ3W8rPPDCm7PEae/s320/Bouquet21221.jpg" width="320" /></a></div><span style="font-family: helvetica;"><div style="text-align: center;">Work in progress, mixed media</div></span><span style="font-family: helvetica;"><br /></span><p></p><p><span style="font-family: helvetica;"><br /></span></p><p><span style="font-family: helvetica;"><br /></span></p><p><br /></p>Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com2tag:blogger.com,1999:blog-679982583847135662.post-36492910787169049912021-06-24T22:51:00.004-07:002021-09-19T23:35:40.873-07:00Rheumatoid Arthritis in the Time of Covid19<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><b><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"></span></b></p><p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><b><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"></span></b></p><p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><b><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"></span></b></p><p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">Last year, when the pandemic hit, I considered blogging my experience of living through a global pandemic of COVID19 with RA, being immuno suppressed due to the meds, and what that all meant for my day to day lived experience. So I started a draft. And another one. And another one...and not a single one of them would come together. So I gave up and just got on with DOING the lived experience. </span></p><p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">Then this week was the meet up of my writing group. This group evolved out of a writing course I was gifted by an editor friend in New York. A short, intense course that revolved around writing about our mothers. All women, all but me located someplace in the USA. Finding a time for our weekly Zoom classes that would work took some time, but we got there. We would assemble, all of them with their evening wine, and me with my morning coffee, to discuss our weekly assignment and, in doing so, developed a closeness that surprised us all. We got to the last day, and no one wanted to just walk away. And so, a writing group was born. </span></p><p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">We meet monthly now, and take turns creating the prompts and hosting. This month our host set a selection of prompts around the concept of mindfulness. It was a deliberate contrast to most of the work we did in the course, and since, which is rooted in the past. As anyone who's a regular follower of this blog would know, mindfulness as a concept, along with gratitude, is something that that I feel has become somewhat tarnished, given the way it gets thrown around within the AI disease communities, and those who'd have us toss all the meds and embrace 'natural' 'cures'... So it's not something I tend to focus on, although my painting is a type of mindfulness, by default, as the concentration required takes me out of my head and keeps me focused on each and every brushstroke. However, that's an incidental characteristic of doing creative work, as opposed to deliberately setting out to 'practice mindfulness'... </span></p><p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">So, I struggled with the prompt. It also coincided with the month of June which is a difficult one for me. My mother's <i>yahrzeit</i> (anniversary of her death) is on the 7th, her funeral was on the 13th and I still carry the clearest images of that day with me, my estranged son's birthday was on the 15th (he was 30 this year), and Mum's birthday was on the 19th. So I've felt emotionally raw all month, and particularly prone to tears, so to write about mindfulness just felt all too much, to be honest. </span></p><p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">My first draft was an angry rant, so I binned it. And decided I wasn't ready to try again. Then early this week I realised that today was meeting day, and I was running out of time to write something. The following piece is what happened. I didn't actually plan to write about the pandemic or my disease, but that's what happened. After the meeting, and the feedback I received from the others, I decided I'd publish it here, with this intro for context, given it's in a slightly different style to my usual writing here on the blog. I may go on to write more about this pandemic experience as it has been, and no doubt will continue to play out. I may not. But here is just one glimpse. And a piece of my artwork that's been done during this time, because I can!<br /></span></p><p class="MsoNormal" style="line-height: 150%; text-align: center; text-indent: 36pt;"><b><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"></span></b><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"></span><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"> </span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_EIWHxC-pPQYP5662j7kuhKK05CRlqNpk5msEu-6-VPTpXNW38mmJLZHxY4xogg9w73kZ_W1rTj6N-V9fARrKaMTohJTzjLjSDpKLWf7cFDQ6IRn908VACZ1AApZ0gfcYYMSAmT7H572s/s2048/041.100_Fotor.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="2048" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_EIWHxC-pPQYP5662j7kuhKK05CRlqNpk5msEu-6-VPTpXNW38mmJLZHxY4xogg9w73kZ_W1rTj6N-V9fARrKaMTohJTzjLjSDpKLWf7cFDQ6IRn908VACZ1AApZ0gfcYYMSAmT7H572s/s320/041.100_Fotor.jpg" /></a></div><br /><p></p><p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">As someone with
the autoimmune disease Rheumatoid Arthritis, I am encouraged by doctors, allied
health practitioners and many of the people within the same cohort to embrace
mindfulness as a practice to alleviate symptoms. To ‘practice gratitude.’ To
listen to my body and be in the moment. Apparently,
this is going to alleviate symptoms. Lessen my need for powerful analgesia. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">Sitting ‘in the
moment’ as I type, I am aware of the pain in my hands, in every tiny joint,
particularly a spot at the base of my right thumb that has been increasingly
troubling me when I try to grip pens, pencils, paintbrushes, sewing needles,
pins, cutlery, etc. I am aware of the stabbing pain in both knees, and the
burning in both ankles that correlates with the burning in my wrists. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I am also
aware, after a week of extreme cold weather off the back of a violent storm in
my region, that it is warmer outside. I am not wrapped in a blanket at my desk
in addition to layers of woolen clothing, as I have been for the past
week.</span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I could go out.
Change my shoes from my habitual knee high ugg boots, that radiate blessed
warmth into those painful ankles and feet, to a pair of runners. Fix my hair,
which is still up in its knot from my shower. I’ve shaped my bread, so I’d be
clear for the next hour and a half while it proves. A walk could improve my
mood, raise my heart rate, ease the headache I woke up with this morning, send
some lovely painkilling endorphins through my system.</span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">But I sit here
typing. I have a deadline. Well, I have two. This essay, of course. But also
ten brand descriptions for the pet supply store that is a current client, due
tomorrow. Both could wait. I could walk, and come back refreshed, and work. But
I don’t. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">The acting
state premier, at the daily press conference this morning, announced new easing
of the restrictions we’ve been living by in the wake of an outbreak of COVID19.
Two outbreaks in one, both from our deeply flawed temporary hotel quarantine
program that has been left to run as our main defence against the virus, due to
the lack of willingness on the part of a federal government that doesn’t wish
to be held accountable for anything that might go wrong. Had they acted and
built fit for purpose quarantine centres to replace those long decommissioned
existing facilities, we may have avoided this latest outbreak, and the fourth lockdown
this state has endured. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">Going outdoors,
and potentially encountering strangers who are ignoring distancing
requirements, who may mock me for continuing to wear a mask, although we are
permitted to not wear one outdoors now, isn’t something I want to deal with. My
vulnerability to the virus has been the most foremost factor in my decision
making about leaving the house for eighteen months now. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I am reasonably
content in my own company. I am used, in these latter years of financial
constraints, to spending long periods of time alone. I am not an introvert, but
I am shy and wary of dealing with people I don’t know. I avoid confrontation
whenever possible. I don’t want to have to explain to people any more why I’ve
not been in their café forever, or shopped at the local butcher where the staff
have steadfastly refused to wear masks, even through our disastrous second wave
last year. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I am becoming a
hermit. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I have had my
first shot of the AstraZeneca vaccine. Two weeks prior to the federal
government raising the cut off age to 60 and over. I am still so angry about
that. My specialist’s preference, and that of all my friends’ specialists, was
that we receive the Pfizer vaccine, as we’d be fully covered within three
weeks, as opposed to three months with the AZ. But two weeks ago, when I had
that first shot, Pfizer wasn’t an option offered to me. With only a single dose
of the AZ vaccine on board, and nine weeks yet before I can have the second, I
have very little defence against the virus, particularly the Delta variant that
was part of the recent outbreak here. There is a second outbreak unfolding now
in Sydney, with daily cases now starting to increase with larger jumps in the
numbers. Our border is now closed to people in the hot zones there. But last
time we had closed borders, people still slipped through and seeded an outbreak
here. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I no longer
trust those people I don’t know. Those people who, on social media posts, bray
about only locking down the vulnerable and the ‘sheep’ – those who follow the
government health advice. The people like me, who would stand very little
chance against the virus, as we have almost no functioning immune system due to
our meds. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I <i>am</i>
grateful for the roof over my head, and a partner who is fully aware of the
consequences for me should I be exposed to the virus, who has carried the load
of shopping and errand running while working full time for the last eighteen
months. Who has endeavoured, despite severe financial constraints, to ensure
that at all times, I had everything in the house I might want or need, to
lessen the possibility that I might have to go out. I am grateful to my GP who,
after our telehealth appointments, faxed my prescriptions to my chemist who, in
turn, took my orders to fill them over the phone, along with credit card
payments, so that all that remained was a moment for my partner to duck in and
collect the prepared parcel of medications. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I am grateful
for those physical acts that contributed to keeping me safe. I am grateful for
the technology that has enabled me to maintain contact with friends and family,
and even to broaden my world with new experiences and new people.</span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I have been
mindful to let my partner, and all those other people, how much I have
appreciated the effort that has gone into those acts. I am mindful of how much
less attractive the outside world feels these days. At the same time, I am
mindful that not venturing out isn’t good for me, physically, mentally or
emotionally. But I also struggle to combat the fierce caution that keeps me at
home where I know it is safe. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I am
particularly mindful that my disease has been in a heightened state throughout
this time. It is particularly active, and was already so prior to the pandemic
due to the stresses of our financial state and my partner’s precarious temporary work
situation that have been our normal for the last few years. The pandemic added another layer of stress, which pushed the disease
into another level of activity that, this time, showed up in my regular blood
tests. This lead to revived discussions with my specialist about altering my
medical protocol, perhaps changing my biologic drug. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">On the bad
days, like today, I wish we’d done that already, and I was on a new medication
that was working better. That I felt better. That I had more energy and less
pain. More interest in life outside my house and less brain fog. More
inspiration about new projects and less preoccupation with the sheer effort of
will required to shake off the lethargy that is dogging my days at present.</span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">During our last
discussion, we abandoned applying for a permit to change my meds, based on the
level of disease activity. It’s high. It is imposing constrictions on my
already constricted life. I am in more pain constantly. My sleep is impacted. I
am exhausted all the time. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">But in stopping
it, and starting a new medication, there will be a gap. A gap between a
medication that’s not working optimally and a new one that may or may not work
better, and in any case, will take time to kick in. Time during which I could
very well go backwards and find myself in more pain, with the disease able to
take hold and flare up more fiercely. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I am mindful of
what that could cost me in productivity. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I am between a
rock and a hard place. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I have been
here for some time now. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I don’t like
it.</span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I want it to
change.</span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">I need it to be
different.</span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">There is
pressure from my partner to make that change. A big conversation had to be had.
We had it. I think he understands what the potential issues are now. I hope he
does. He likes to fix things. He can’t fix this. It frustrates him and that
frustration boils over and becomes something that contributes to my stress
levels. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">These are the
moments in which I live, one after the other. This piece is the result of
sitting with them, examining where they leave me at any point in time. This
mindfulness does nothing at all to alleviate my pain, my brain fog, the
exhaustion of living with a body that doesn’t work properly. The gratitude I
have for my partner’s commitment to me and keeping me safe, our mad cats who
make me laugh when little else does, my friends who keep in touch no matter how
rarely we physically see each other, and those who continue to buy my work is
profound. But it doesn’t change the impact of the disease. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">Eventually, the
time will roll around to when I can have my second shot of the AZ vaccine. I
will continue to wear a mask when I leave the house. I will continue to limit
how much I leave the house and where I go when I do. There are doubts about the
level of protection I will get from the vaccine, as my suppressed immune system
will struggle to mount a response to it, and may not be able to produce enough
antibodies. A recent trial of antibody responses to vaccines for people like me
found that the optimum response was achieved with the mRNA vaccines. Pfizer.
Which I didn’t get, because there was no nuance in the government’s priority
grouping of who got which vaccine here, and the age change came too late for
me. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">There is a
possibility that booster shots will start to be offered here, in which case, I
will likely be offered that in the form of either Pfizer or the Moderna vaccine
which the government finally ordered. However, with only three percent of the
total adult population here fully vaccinated four months after the rollout
commenced, it could be a long time before that is available to me. </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;">It could be a
long time before going out is safer.</span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"> </span></p>
<p class="MsoNormal" style="line-height: 150%; text-indent: 36pt;"><span face=""Arial",sans-serif" style="mso-ascii-theme-font: minor-bidi; mso-bidi-theme-font: minor-bidi; mso-hansi-theme-font: minor-bidi;"> </span></p>
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{page:WordSectio</style><br /></p>Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com2tag:blogger.com,1999:blog-679982583847135662.post-27742198047388754642021-05-09T20:28:00.001-07:002021-05-09T20:28:17.986-07:00Letter to my absent son<p><span style="font-family: helvetica;"><span class="tojvnm2t a6sixzi8 abs2jz4q a8s20v7p t1p8iaqh k5wvi7nf q3lfd5jv pk4s997a bipmatt0 cebpdrjk qowsmv63 owwhemhu dp1hu0rb dhp61c6y iyyx5f41">Towards the end of 2014, I wrote a very personal blog post, more personal in regards to family than was my usual habit. It was written when I was in distress, following events with No.2 son that had spiraled out of control - that were never in MY control in any case. You can read that post <a href="https://theoriginaldragonmother.blogspot.com/2014/11/your-kids-and-hard-drugs-when-to-step.html" target="_blank">HERE</a>, for context.<br /></span></span></p><p><span style="font-family: helvetica;"><span class="tojvnm2t a6sixzi8 abs2jz4q a8s20v7p t1p8iaqh k5wvi7nf q3lfd5jv pk4s997a bipmatt0 cebpdrjk qowsmv63 owwhemhu dp1hu0rb dhp61c6y iyyx5f41">Six and a half years later, almost five years since I last heard his voice (on his birthday in 2015, the last time he voluntarily made contact, calling early that morning before I'd had a chance to make contact to wish him happy birthday), I discovered that he's removed the FB account he made when he decided to change his name, and the messenger function no longer works as I found when I tried to send him a message this morning, although, the profile still shows up with that name in my messenger file. <br /><br />Self indulgent? Perhaps. But the pain of my child removing themself from my life continues to eat away at me. I struggle when Dragon Dad makes big noises about how much he misses my stepson, who has been overseas for the last couple of years. Physically, he is far away, but they talk every day. No.1 son is interstate, and isn't hugely communicative, and that is also difficult to cope with, but he IS there. But where No.2 might be is, instead, a huge hole of unknowing... So, in the hopes that he might read this, I'm writing it here, because he followed this blog, and may find it.</span></span></p><p><span style="font-family: helvetica;"><span class="tojvnm2t a6sixzi8 abs2jz4q a8s20v7p t1p8iaqh k5wvi7nf q3lfd5jv pk4s997a bipmatt0 cebpdrjk qowsmv63 owwhemhu dp1hu0rb dhp61c6y iyyx5f41"><span> </span><span> </span><span> </span><span> </span>_________________________________________________________</span></span></p><p><span style="font-family: helvetica;"><span class="tojvnm2t a6sixzi8 abs2jz4q a8s20v7p t1p8iaqh k5wvi7nf q3lfd5jv pk4s997a bipmatt0 cebpdrjk qowsmv63 owwhemhu dp1hu0rb dhp61c6y iyyx5f41"><br /></span></span></p><p><span style="font-family: helvetica;"><span class="tojvnm2t a6sixzi8 abs2jz4q a8s20v7p t1p8iaqh k5wvi7nf q3lfd5jv pk4s997a bipmatt0 cebpdrjk qowsmv63 owwhemhu dp1hu0rb dhp61c6y iyyx5f41">Dear, L - yes, the name I gave you, and not the one you say you've change it to...because I don't know you as that person... <br /></span></span></p><p><span style="font-family: helvetica;"><span class="tojvnm2t a6sixzi8 abs2jz4q a8s20v7p t1p8iaqh k5wvi7nf q3lfd5jv pk4s997a bipmatt0 cebpdrjk qowsmv63 owwhemhu dp1hu0rb dhp61c6y iyyx5f41">I see you've deleted that profile from FB now.
<br /><br />You're often in my dreams. You were there again last night. I carry you with me in some weird metaphysical way that's hard to explain. I guess there's something about having physically carried a child that lingers, maybe. </span></span></p><p><span style="font-family: helvetica;"><span class="tojvnm2t a6sixzi8 abs2jz4q a8s20v7p t1p8iaqh k5wvi7nf q3lfd5jv pk4s997a bipmatt0 cebpdrjk qowsmv63 owwhemhu dp1hu0rb dhp61c6y iyyx5f41">I guess the biggest thing for me is always wondering how you are, if you're alright. If you found a way forward that's taken you to a place where you're doing something fulfilling that suits you, your abilities, and makes you happy.
And the very hardest thing is just not knowing.
And also knowing that if I had that time over when I came to Adelaide that last time I saw you that I don't know if I'd have done anything differently, because really, I don't think I had any other options - you didn't give me any, or Remi and her parents. I had a limited time there, constrained as always, by funds, or lack of. All I could hope was that you'd make a different decision than the one you made. </span></span></p><p><span style="font-family: helvetica;"><span class="tojvnm2t a6sixzi8 abs2jz4q a8s20v7p t1p8iaqh k5wvi7nf q3lfd5jv pk4s997a bipmatt0 cebpdrjk qowsmv63 owwhemhu dp1hu0rb dhp61c6y iyyx5f41">I'm sorry for the ways I failed you - clearly I did, or you'd not have cut me off so consummately. I suspect all parents fail their children in any number of ways. I know mine did, in so very many ways.
I have a letter I found in Nanna's things after she died that she'd written to me but never sent, at a time when I'd put huge walls up to protect myself. It was around the time before your father left us, when I was struggling to deal with a great many things - my RA diagnosis, Steve's growing separation from us which was partly because he couldn't deal with the diagnosis, fear of what the diagnosis would mean long term coupled with the constant pain and fatigue, and the emotional pain of having remembered the abuse meted out to me by my father which Mum was busily denying happened, along with your father and other family members. I had no idea, really, of how my pulling away from her affected her - I couldn't have. I was too busy protecting myself and trying to cope on my own with you and Jo, given S was so increasingly absent, even though he was still living with us.
There is a lot more I could say about that, and things I understand better about myself and why I made certain decisions in the time beyond that, including getting swept up in the relationship with K, which had such profound effects for all of us, and probably mostly for you. But this is not the time or place for that. </span></span></p><p><span style="font-family: helvetica;"><span class="tojvnm2t a6sixzi8 abs2jz4q a8s20v7p t1p8iaqh k5wvi7nf q3lfd5jv pk4s997a bipmatt0 cebpdrjk qowsmv63 owwhemhu dp1hu0rb dhp61c6y iyyx5f41">What I do know is that it impaired my ability to make better parenting decisions at times, for both you and Jo. And I'm deeply sorry for that. Should you read this at some point, and decide to reconnect with me, know that you can ask me anything, and I will do my best to answer with the truth.
And in the spirit of that, yes I'm writing to you the day after Mother's Day, because one of the very big holes in my experience of Mother's Day these days, along with my mother's absence which is such a great gaping hole in my life, is the absence of you as well. </span></span></p><p><span style="font-family: helvetica;"><span class="tojvnm2t a6sixzi8 abs2jz4q a8s20v7p t1p8iaqh k5wvi7nf q3lfd5jv pk4s997a bipmatt0 cebpdrjk qowsmv63 owwhemhu dp1hu0rb dhp61c6y iyyx5f41">The alternate profile you made on FB is no longer there, and I discovered just now that the Messenger function for it no longer works. My mobile number is the same, as is my gmail. You may well be keeping an eye on this blog still, for all I know, and if so will have noticed I've not blogged for some time, for many different reasons. I planned to blog my way through last year and the lockdowns but in the end, I couldn't get myself into the right headspace. But I write this letter here to you know, knowing that you know this blog still exists.<br /></span></span></p><p><span style="font-family: helvetica;"><span class="tojvnm2t a6sixzi8 abs2jz4q a8s20v7p t1p8iaqh k5wvi7nf q3lfd5jv pk4s997a bipmatt0 cebpdrjk qowsmv63 owwhemhu dp1hu0rb dhp61c6y iyyx5f41">You may also have found my art page on FB by now, and will see that somehow, I've become both a watercolourist and botanical artist...and some pet portraits along the way. So there are all sorts of easy ways that you could use to make contact, any of which would be so very welcomed by me and C, and your brother - who is married, by the way, which you'd know if you've been keeping an eye on my wall at all. </span></span></p><p><span style="font-family: helvetica;"><span class="tojvnm2t a6sixzi8 abs2jz4q a8s20v7p t1p8iaqh k5wvi7nf q3lfd5jv pk4s997a bipmatt0 cebpdrjk qowsmv63 owwhemhu dp1hu0rb dhp61c6y iyyx5f41">I have looked for you, but honestly, I don't know the ins and outs of how to do that properly. I've stopped short of contacting your father, and if he has contact with you again, he's certainly not bothered to let me know. The last time I had contact with him was when our mutual friend from the Con died and I touched base to let him know. He was a no show at her funeral. G - who's also in Melbourne these days - often asks after you, as do T and H. J wanted to invite you when S insisted he have a big bash for his 30th, but we had no means of doing that. Likewise for his wedding in 2019. A asks if I've heard from you. NONE of this is in any way intended as any kind of emotional blackmail via guilt, by the way. Just the facts of what happens when a loved member of a family makes a decision to disappear. It's an ongoing pain that is just always there. </span></span></p><p><span style="font-family: helvetica;"><span class="tojvnm2t a6sixzi8 abs2jz4q a8s20v7p t1p8iaqh k5wvi7nf q3lfd5jv pk4s997a bipmatt0 cebpdrjk qowsmv63 owwhemhu dp1hu0rb dhp61c6y iyyx5f41"> Anyway, enough.
Just know that I love you. You're my child. Nothing changes that, ever.
xxx</span></span></p>Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com1tag:blogger.com,1999:blog-679982583847135662.post-40542395618090926092019-06-02T21:16:00.001-07:002019-06-02T21:16:52.738-07:00Rheumatoid Arthritis: Working and Earning with a Chronic Illness<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">It is AGES since I last wrote a blog post, I know... Life has kind of got in the way. Over the years of blogging, I find that I write a lot when things are difficult, and not so much when they're cruisey, but then when they get REALLY difficult, I stop again...<br /><br />Suffice to say, life has been very difficult, stressful, and emotionally draining for the last six months, hence the radio silence. </span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I decided though, to have another go at building blogging back into the schedule. I'm not going to be so rash as to make promises, but I will try and blog once a week. In theory, that feels doable. In reality, it might not happen, but I will try. </span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Kicking off, I want to write about working. Working when you're sick. Going back to when things changed for me is something I wrote a few years back in <a href="https://theoriginaldragonmother.blogspot.com/2014/05/parenting-when-you-have-chronic-illness.html">this post.</a> I was medically retired in 2013 from the marketing position I held at the time, and due to the severity of my disease since then, have not been able to consider outside employment since. <br /><br />So, what to do? </span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I spent a great deal of my working life layering concurrent jobs. As is the case for many women, my working life was interrupted by having children, and often tailored to being able to support a working partner. I haven't had a career, per se. I quit uni early during my second marriage as it was financially necessary that I work. My singing teacher at the time was furious. However, I was already singing professionally by then, and performing was my aim in doing a Bachelor of Music in the first place, so not achieving the academic qualifications didn't bother me too much at the time. It did, however, impede me further down the track in terms of other options. So, I did a visual arts degree in the end. By the end of secondary school, I'd wanted to pursue both music and visual art - which didn't happen, largely due to too many people pushing me to just focus on music. In the wake of the break down of that second marriage, I decided it was my time to do what I wanted to do. I distinctly recall an accountant friend suggesting that achieving being added to the core chorus of the local opera company and commencing a visual arts degree were perhaps not the most sensible choices when I had two children to support on my own. But at the time, I also recall feeling that the things I'd wanted to do had so often been sidelined by other people making decisions for me, and I'd had enough of that. </span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I got the degree, and followed it up with an academic masters in art history and curatorial studies. Most frustratingly, I never managed to land a full time job in my field - it's intensely competitive, as there are too many courses turning out wannabee curators for far too few institutions in this country. So I continued to lurch from contract job to contract job in sort of related areas, building up a CV that is anything but orthodox, because it was always a matter of taking what presented itself, because there were always bills to pay, and I didn't have the luxury funds to enable me to hold out for the perfect job. </span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Cue 2013 and the RA going berserk, and suddenly I had a massive road block to any full time employment.</span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Ironically, RA and being medically retired has gifted me something I lacked - time. Not being able to work full time, while frustrating on all kinds of levels, and financially difficult - particularly at the present time, has gifted me with time. Time to put into writing - which I've done alongside other things since 2004. And more recently, my art practice, which was always the first thing to get dropped in the face of work priorities. </span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">My master's thesis supervisor was responsible for me getting into writing professionally when she handballed me an exhibition review for a craft journal. That lead to more writing within the arts, which I loved. Sadly, with the GFC and general downward trend of funding in the arts, that work has all but disappeared, and I miss it. However, I was lucky enough to discover, via a social media ad, an Australian ghost writing company that was seeking more writers, and I've been doing contract work for them for many years now. It varies in type, quantity and subject matter quite a bit, but the bulk of it, over the years, has been blog posts for business websites. So that's been there in the background in various amounts for about ten years now. </span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I'd tinkered with different art activities. When my father died, and I received a small inheritance from his estate, I made the decision to invest in myself, and spent a year as part of a ceramics collective. I loved that. I had access studio space, equipment, and people. It was a happy and productive period. I got gallery representation and sold lots of work through that gallery, and did some commission pieces as well as selling privately. Then the money ran out. I did a business plan back in art school, costing out setting up my own studio so I could work independently - the numbers worked. But, the initial funding was something I've never been able to amass. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I'd not done much with my drawing, painting and mixed media work for some years, but it's something I CAN do from home, unlike ceramics. I joined Instagram after being hassled by artist friends online who told me that, as an artist, I SHOULD be on Insta. Within a couple of weeks those same people were hassling me about the #100DayProject - a creative project hosted on Instagram where participants commit to a daily practice of something creative or 100 days. I didn't have much money and I didn't want to over-face myself, so I decided to do pencil drawings each day. It was a turning point with my art, getting back to that daily practice, and I ended up selling a few pieces from that. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Last year, Dragon Dad gave me watercolours. I eyed them with some fear for a month - they're a medium I've avoided most of my creative life, because they're HARD! Then the photo group I was in - I've written about that <a href="https://theoriginaldragonmother.blogspot.com/2017/04/ra-life-things-that-are-keeping-me-sane.html">HERE</a> - had its colour month, where each day's prompt was a colour, so I decided to bite the bullet and paint the prompts. I figured that if all I had to really focus on each day was the colour, I should be able to manage the paint. Well, famous last words. It was a hell of a month. Every day I was painting, finding subject matter that would fit the colour, then painting. Then the unexpected happened... I started, about ten days in, to get messages asking if I was selling the paintings. So I sold one, then another, and by the end of that month, I'd sold more than half of them. Not only that, I started getting asked if I could paint specific things - commissioned pieces. And then, messages started coming in asking if I could draw things as well, and suddenly, every day I was working on something, and have been since. I've revamped my Facebook page, which you can find <a href="https://www.facebook.com/thehandbuiltpot/">HERE</a>, and should there be something there you like, or something you'd like to commission, you can contact me via the messenger function there and we can discuss your options.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Another thing that happened, that was quite unexpected, was the flurry of requests for portraits of people's pets. I'd done a few drawings of our two Siamese cats during last year's #100DayProject, and one watercolour of the little one, and a number of those sold. Then the breeder of our Siamese requested a graphite drawing of her old Siamese boy as he's getting on and she doesn't know how much longer she'll have him. Following that, the requests flooded in - sometimes for animals people still have, but often in memoriam, after they've lost them. When I finish this post, I need to get back to the one I'm currently working on - a graphite drawing of a standard poodle, who is very much alive!</span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">It's unpredictable, as far as earnings go, being a writer and an artist. That's always been the case. The trick is in layering the activity, and working out how to value add to the practice. Lack of funds - Dragon Dad is actively job seeking at present, and has been doing so for some months now, after a number of his activities didn't work out as planned, so our finances are extremely precarious right now - means I need to maintain an art practice with small overheads. I can't spend lots on materials, so as much as I'm starting to itch for canvas and acrylics again for big paintings, I can't go there yet. So it's all works on paper, and nothing huge. Mostly graphite, coloured pencils, watercolour and some gouache, with a bit of collage thrown in for good measure. But that gave me the idea for this year's #100DayProject on Instagram - to go bigger (A3) and focus on pattern making so that as well as building up a collection of, potential, saleable semi abstract mixed media pieces, they could be used to create another layer of activity - an online shop with merchandise with my work on it - tote bags, small zippered pouches, throw cushions, art prints, and much more. To that end, I joined Society6, a platform for artists and designers, and opened my first online shop. I was chugging along with the #100DayProject when I fell and broke my arm, which put the bigger, mixed media work out of reach - I'm just out of the brace, but my elbow joint is jammed, and I'm still unable to use it fully. So I got some more work up in the shop, but I'll have to wait until I have two fully functioning arms to get back to it. The way to make a site like that work is to have quantity - quantities of different artwork, so it can appeal across a broad range of potential customers, and quantities of sales, as the percentage I earn from each sale is small, but lots of them add up.... The shop is still up and running, and you can view it <a href="https://society6.com/karenfinchartanddesign">HERE</a>. I've seen some of the merchandise now, and it's good quality, and the purchase and delivery system, which is all managed by the site, is straightforward and works well.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So, for others out there who are facing loss of regular employment due to your disease, it may not be the end of the world. There may be ways you can turn things you like to do into a business that you can do from home, in your pyjamas on a bad day. Or, you may have something you've always wanted to try, and can take some short courses to dip your toes in and see if you like it that could, in turn, be something you can monetise. It DOES still require effort, but it's definitely not the same as having to show up in an office for a 9am start day after day, and then last all day each day - which is something I can no longer do. </span>Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com4tag:blogger.com,1999:blog-679982583847135662.post-27376608337624896532018-09-27T18:21:00.000-07:002018-09-27T18:21:10.338-07:00Rheumatoid Arthritis and Stress...<div style="text-align: center;">
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><strong><span style="color: blue;"><a href="http://radiabetes.com/blog-week18/alt4.html" rel="noopener" style="color: blue;" target="_blank">Everything else</a> </span>– </strong><i>Is
there something we missed in this year’s prompts? This wildcard is
your place to add it in. Not everything made our list so be adventurous
and take us in a new direction. Sometimes the everything wildcard is
the seed of a new prompt for next year so let your mind roam and see
where it goes. Maybe mindfulness is on your mind? Or perhaps you have a
funny story? We are all ready to hear the scoop on what is on your
mind that was missed elsewhere.</i></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">This is one of the 'wild card' topics from the topic list for this blogging event. Today's prompt was about marijuana and it's potential place within treatment protocols. I've never used it, and it's not wildly available here - legally - so as a topic to write about, it didn't resonate with me. The other wildcards included one on doctors and doctor relationships, which I covered to some degree in my first post this week, which you can read <a href="https://theoriginaldragonmother.blogspot.com/2018/09/the-medicine-pain-meds-and-dealing-with.html">HERE</a>. I'd just have been repeating myself - so that was out. Then there was politics... I didn't want to get on my soapbox about that. I'd have got all ranty, because while the political system and climate here are very different to that in the US (THANK GOODNESS!!!), there are still the same non-consultative processes happening that make me cross, and I didn't want to go there today. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So, I thought I'd take the opportunity to address some of the reasons this blog has been so silent for almost a year. There's been a lot going on, but the common denominator in all of it, for both Dragon Dad and myself, has been stress... It's been an excessively stressful year. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">We made a major interstate move from Sydney to Melbourne two years ago. At the time, Dragon Dad was still working on a new business, a project that ultimately spread over seven years - a major part of our time together so far. It had so much potential on so many levels. Sadly, as can happen, it hasn't come off. Sadly for him, most of all, because he put everything into it, and I do mean everything. We're very broke now, scarily so, and we're having to live very, very carefully. It wasn't anything to do with the quality of his product or his work - it was everything to do with timing, money, and an industry that hasn't changed its methodology for 70 years, and decision makers within it that weren't ready to rock the boat and take on a colossal industry shake up. A revolution, even, because that's what it would have been. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Naturally, that's been a huge disappointment, but more importantly, it's meant that Dragon Dad has had to find other work, and that's been a mammoth challenge. He's spent most of his life working for himself. He's a visionary, entrepreneurial type. A design creative, a dreamer, but with that, a powerhouse. He's built numerous companies and businesses, and had some huge successes. Grappling with starting over, from a position of having no funds, has been hugely difficult. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">He was given an opportunity to get into real estate - something he's been on the edges of over the years with some of his businesses, and something he's had a sneaking interest in. Beginning in real estate though, is a young person's game. Someone who doesn't have grown up financial responsibilities and bills. We've been living on the edge, just scraping by for a year now, and he's now job hunting for something else that will offer a livable salary and more opportunities at management level - because the thing about real estate is that, while it can offer excellent income potential, it takes TIME...and a lot of time at that...to do that consistently. We don't have time, because we have no reserves to fall back on. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">He started that around this time last year. Then in late November he got sick, and sicker... Getting him to a doctor was a major task...like too many men, he doesn't do doctors... Over a couple of weeks of different doctors in different clinics, because he'd go, and get messed around, because he'd not let me go in with him, and his descriptions of what's going on are terrible - I've been in the ER with him, and he's hopeless - it was a good three weeks before anyone thought to Xray his chest. My nurse friend and I had, by that time, based on his symptoms, diagnosed him with pneumonia, and we were right. The next thing was keeping him at home and resting - because you have to do that with pneumonia. He kept trying to go back to work - a job that means hours of walking the streets, knocking on doors...with pneumonia. He'd come home mid morning, grey and exhausted and collapse into bed, then try again next morning. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Eventually, he conceded that he needed to rest - REALLY????? And was slowly improving when he had a major kidney stone attack. He makes kidney stones...over and over. We now know why - at least this time, there's been a bit more investigation, so we have a lot more information. But that took the next six months, as he doesn't have private insurance. I do. I have to. It's something that I've held onto no matter how tight our money is. But I've been unable to get him to join up. So, two ER visits later across a few weeks, he was finally admitted, very ill and in ridiculous amounts of pain, and a scan was finally ordered - which disclosed a 9mm stone obstructing his left ureter. The surgical process is to insert a stent into the ureter, then blast the stones with a laser - that monster wasn't the only one in that kidney - then remove the stent when all the pieces have passed. In the private system, that happens over a couple of weeks. Ureters don't like stents much, and for Dragon Dad, the reaction was severe, and caused terrible pain. The public system isn't anywhere near as efficient. They just inserted the stent in that first surgery. Then sent him home to wait for a letter telling him when to go in to have the laser surgery. That took another two months, and then home to wait for the next letter to have the stent removed. Another three weeks... <br /><br />That got us to the Easter weekend - he had the surgery on the Thursday prior. Just as I was thinking of heaving a sigh of relief that it was all over, I got the call that no mother wants to get - No.1 son's girlfriend telling me that No.1 had had a huge bicycle crash and was in hospital in Sydney. Communication isn't one of her better skills and it took weeks before I finally was able to piece the whole picture together. But he spent three days in the ICU with a bleed on his brain. His collarbone and shoulder were both broken. He had a very nasty gash on his face that had opened up his top lip, requiring plastic surgery. And he'd left an awful lot of skin on the Pacific Highway. He was a week in hospital. Many weeks at home healing physicall, and then back to work in the NSW parliament on light duties initially. Somewhere in that time, he showed up to a job interview with his stitches, bruised face and arm in a sling. They sent him home, and said they really wanted to interview him but they'd rather do it when he was much better. That happened and he got the job - so he's doing well now, and he and his girlfriend have got engaged in the meantime. Twice I needed to get to Sydney - when he was in hospital, and when they had their engagement party. I didn't get there. There wasn't money for flights and being there. I've not seen him face to face since November last year when they were here for a party, and he and I had brunch together. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So, where did all of that leave me...? Stress and an autoimmune disease are a bad combination. A very bad combination. Orencia had failed for me by the end of last year, and I'd started Xeljanz. So through the beginning of this year, and Dragon Dad's epic kidney stone drama, I was in the first trial period of a new med. The day I saw my rheumatologist for the evaluation, and potential reapplication for a continuation of the prescription, I lost it completely. Poor guy - my Sydney rheumy coped very well with emotional breakdowns in his rooms. I like this new one - he's very good. But he's younger than Sydney Rheumy. Doesn't have as much life experience. And he's Chinese - much more reserved. So it was awkward. I wasn't in any doubt of his sympathy - that was very obvious, as he pushed the box of tissues across his desk to me. But he didn't quite know what to do or say - which was equally obvious. And all I could report was constant flares, increased pain, needing much more in the way of pain meds, sleeping badly, seriously overtired and anxious, and very, very stressed....all of which was triggering the flares. He said that it was impossible to evaluate what the drug was doing - my pathology is never very useful, as my bloods don't typically show much. I left with another apoointment scheduled for three months later, much hope that the situation would be better, and that I would be too.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">All the medical stuff - Dragon Dad's and my son's - did ease, of course, by the time I saw him next. But by then, the precariousness of our financial situation had really set in, giving rise to another level of stress that is now a constant... There have been times when it's been a real challenge to do the grocery shopping. We've been paying bills by installment - and our power bill has been a major problem, because it's been a very cold winter and we've had to have heaters on. There have been times when I've struggled to fill prescriptions. That's been confronting. I've discovered just how barely my disease is controlled by Xeljanz, Arava and Sulfasalazine. I'm on the max dose of all of them. If I can't fill a script, I'm in trouble - as I've experienced a few times in recent months. I go downhill frighteningly fast, which is another stress in itself. As I write, I have an empty Arava bottle. I took the last tablet this morning. With the money Dragon Dad was able to get in this week, I was able to get Xeljanz, my anti-inflammatories and the pills to stop those eating my stomach. I still have Sulfasalazine. I have pain patches, and I have enough Tramadol to get me through the next week. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Not knowing if it's financially possible to fill very necessary prescriptions is awful. Knowing that I've just done a batch of articles but that my freelance boss is terrible at paying on time so that a chunk of money that would make a huge difference to us might be coming, but I don't know when, is awful. Knowing that my bank account is overdrawn again, and getting messages from the bank that I can't answer because there's no money to put it back in the black, is awful. Knowing that even if I could go out and get a job - I'm almost as unemployable as Dragon Dad for many similar reasons - my body would betray me, is awful. Watching Dragon Dad's disappointment and frustration as application after application goes out and he doesn't get offered interviews even - and knowing that if he DID get to an interview, he'd probably get the jobs - is awful. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">There IS light. Dragon Dad's old business partner from the big project is helping us. Other good friends are also helping. I just got some of my watercolours of toys placed in an up-market children's wear shop with two outlets - both in areas with people who have money to spend. The shop owner is hugely enthusiastic and supportive of my work, and if these first ones go smartly, has plans for a number of ways to build up making more of that work happen. And that IS work I can sustain. It won't bring in a living wage, I know, but it would go a long way to help. It would also help my state of mind, knowing I was more able to contribute. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So, I am typing with monstrously painful hands, my feet are on fire. My knees seize if I sit for longer than 20 minutes... I'm flaring again. And the primary cause of the flare is stress. The key to dealing with stress is to do everything you can to remove the stressors. This is what I advise people in our online support group in my capacity as an admin. I wrote a comment on someone's post about that just this week. I'm not sure quite how to follow that advice for myself when the stressors we're currently dealing with are such basic ones that can't really be ignored. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I read a lot. I spend more time than I usually would on FB and Instagram chatting with people - it's a wonderful distraction, and removes me from my 'now' to some extent for a little while. A fair few of my online friends are on holidays and are posting wonderful photos - I'm holidaying vicariously with them. I lose myself in my work - and have a session planned for later today to begin a new piece. On the warmer days - and we're now getting a few - I spend time outside in the sun and revel in not wearing four layers of clothing! </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">It WILL pass. I know that. Things WILL get better. Dragon Dad WILL find a job that he'll enjoy and want to go and do each day, and that will pay enough to put us in a better position. I WILL stop flaring constantly, because the stress WILL ease. It's just not happening yet. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Apologies for this being such a long and not very positive post. I wasn't sure, when I started writing, how it would develop. This is the one place where I don't plan what to write - these posts kind of write themselves once I settle into the process. Much like the journalling I wrote about in the post about mindfulness the other day. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">But, this is my reality. This is the year that we've had. And it is still going...so it's the little things I need to focus on. The things I CAN do something about. They may not make a huge difference as far as the big picture is concerned, but they are things I can do. Being able to do something constructive at this stage is huge. So I'm grabbing every bit of that that I can, and hoping that there can be enough of them in each day to keep me going, and keep me being able to be supportive of Dragon Dad as he strives to keep going too.<br /><i></i></span>Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com8tag:blogger.com,1999:blog-679982583847135662.post-61981553023863855912018-09-26T17:46:00.000-07:002018-09-26T17:46:46.571-07:00Rheumatoid Arthritis and the Acadmic <div style="text-align: center;">
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><strong><a href="http://radiabetes.com/blog-week18/day4.html" rel="noopener" target="_blank"><span style="color: blue;">Research</span></a> – </strong><i>Do
you incorporate research into your disease management? If you do
explain how and what difference it has made. If not discuss why not.
Help us understand any barriers you have experienced to using research
about Rheumatic Disease.</i></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I'm - among other things - an academic. I did a studio based visual arts degree, and followed that up with a masters in art history and curating at the University of Adelaide. So my natural inclination, when faced with anything new, is to research it. It's just how I operate... Naturally, when it comes to my RA, I don't do anything different...</span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><i> </i></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">It HAS lead to some quite amusing situations, over the years. Some time ago - a long time actually - while the disease was still relatively mild, I was struggling to deal with rising levels of chronic pain, even though the disease wasn't progressing very fast. Then, while at the physiotherapist having some work done on dodgy wrists - I was at art school at the time, so that was impacting my ability to work quite significantly. My then physio had a very holistic approach to her discipline - BIG TIP...look for people like that to have on your team - and included a lot of body work (AKA massage) into her treatments, which not many physios ordinarily do. Working up my arms, she commented on the knots of muscle spasms in my forearms, then found the same in my upper arms. Thoroughly intrigued, she checked out my legs and found more in my calves and thighs.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">We were both quite puzzled, but ultimately, after then doing some evaluation of my grip strength, and observing how I was picking things up and putting them down, and getting up and down from sitting positions, and other normal daily movements, she said that the most likely cause was aggravation of the muscles that were being used in ways they weren't intended to be used, because I was using my muscle strength - which is still considerable - to compensate for joints that weren't working well. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">What happens, as they build up, is that the muscles themselves become much more painful, which puts more burden back on the joints, and then back again to the muscles, and so on - it's an entirely destructive dialogue that happens between my muscles and joints as I adapt the way I use my body to compensate for the deterioration in my joints. All leading to a need for more and more pain relief. Which is a rabbit hole I didn't want to go down back then, any more than I do now! So, I did some research...</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Then I took myself to my GP - I needed to see her anyway, and then, with that business dealt with I said I wanted to ask her about Valium - Diazepam. It has a terrible rap here, having been over prescribed to too many women in the past to keep them 'calm' - rather than deal with the issues that had made them anxious in the first place... BUT, chemically, the drug is a muscle relaxant. I explained what the physio had found, and her thoughts on the situation. And I asked whether, given the Valium was a muscle relaxant, if a small dose of that would deal with my muscle spasms, which would then loosen their grip on my joints, and in doing so, ease the pain levels overall, and allow me to drop back the amount of painkillers I was using. I still remember the VERY long look she gave me... But then, after thinking about it, said that there was a definite logic to my idea, and prescribed me a single course of 5mg tablets, saying, "I don't know how much will make a difference, for this purpose, so you'll have to play around with it a bit to work it out for the longer term." Yep - take the Valium and go home and play with it!!! She'd been my GP for many years, and was well accustomed to me protesting AGAINST taking anything, so she knew I was highly unlikely to gobble them all up in five minutes. And she was also, obviously, going to monitor the situation. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">To this day, Diazepam is part of my medicine box. I take a 5mg tablet maybe twice a week, mostly. When I flare, and things start to seize, I'll add in another one until the flare settles again. I've not been all knotted up with muscle spasms since. So, my research paid off. I've continued to do my own research, taking things to my GPs and rheumatologists over the years when I've wanted to see what they think - if it involves something drug-based, or something that might be in conflict with my medications. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">The flip side of this is dealing with doctors' egos... The pathway to collaborative relationships with our doctors can be a rocky one. One of my criteria that's non-negotiable in my relationships with my doctors is that they see me as a partner in my ongoing treatment. If they're not prepared to work WITH me, then they're not the doctor for me. I'm an intelligent, highly educated individual, and I won't be 'doctored'... I ALWAYS ask questions as to why a particular treatment might be being suggested, and I expect to be given the basic courtesy of a clear answer, and the space to then discuss it among other possible options. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">While there have been definite improvements overall in the types of people being admitted to med schools - it's no longer just based on final school grades here in Australia; there's a rigorous interview process to enable the schools to evaluate whether potential candidates also have the temperament and right reasons for wanting to do medicine - it's not perfect, but it's better than just admitting anyone who scored high enough marks. The kind of intelligence required to study well, and do well in exams isn't all it takes to make a good doctor, as we all know! But there are still doctors out there with a god complex, who don't like to work collaboratively. I have encountered some of them...and it wasn't good. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I have sero-negative RA. I've never shown a positive rheumatoid factor in my pathology. In a study published in the journal <i>Rheumatology,</i> in August 2016, it was estimated that 38% of RA patients are sero-negative. At the time I was diagnosed, I was given a figure of 20% by my first rheumatologist who, fortunately for me, was one doctor who was well aware of sero-neg RA, AND viewed it not as a milder form of the disease - as many still do - but a genuine variant that can be mild to severe, just as sero-ps RA is...and requiring a similar approach to treatment. In the intervening years between that doctor and the wonderful rheumy I had in Sydney, and my current one here (recommended by my Sydney doc), I've encountered many rheumatologists who have dismissed my initial diagnosis. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">One question I would ask, after finding that 38%, compared to the 20% I was given 26 years ago, is just how many UN-diagnosed people there were out there who DID have RA, and then received no treatment for how long? The mind boggles!</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">To be brutally honest, I find that very poor. I'm not medically trained. I don't have access to all the available research. And I can seek out what IS available and find enormous amounts of relevant info about sero-neg RA. For a rheumatologist NOT to do that speaks very poorly of the experience patients like me are likely to have when encountering them, and the anecdotal stories via support groups bear that out. It can take much longer for someone with sero-neg RA to be diagnosed, and that means delays in starting treatment, which puts the patient that much further behind the eight ball.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I'm an admin in an online support group for Australians with Autoimmune inflammatory disease. Most have RA in common, some have secondary AI diseases as well, and we have a range of people with different levels of severity. Some have other inflammatory AI diseases altogether. The thing I encourage ALL of them to do, particularly those newly diagnosed, is to start learning about their disease. Start doing the research. Start reading. Talk with those of us who've had AI diseases for a long time. Ask the questions. There's no such thing as a stupid question, and knowledge is power - to mash a couple of cliches together...! </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">The reality for most of us is that we have to be our own advocates. To do that, we need to know what we're talking about. We have to do the research and learn about our diseases and treatments, and we need to have doctors who will work WITH us on our treatment long term. But, learn HOW to research. Seek out the government and education sites - the .gov, and .edu sites. Those with .com MAY have useful info, but remember, they are also a commercial site with a particular product to push, on the whole. In Australia, the website for The Australian Rheumatology Association has patient portals. You can download excellent PDFs about medications for free, information about different AI diseases, and they offer a 'find a rheumatologist' service as well. It's excellent. You can find them <a href="https://rheumatology.org.au/">HERE</a>. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So if you're just starting out and are feeling overwhelmed and don't know where to look, start there. Information on the Mayo Clinic site - American - is solid too. It's written for the lay person, so it's also a good place to start. And there are others. But BEWARE Dr Google. DON'T try and diagnose yourself - that's a rabbit hole that's crazy making. That's what the doctors are for. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">At the end of the day, how much research an individual will do depends very much on how they operate. For me, it's a natural thing. About everything I'm curious about! </span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><i></i></span>Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com6tag:blogger.com,1999:blog-679982583847135662.post-38142032564637712102018-09-25T16:56:00.002-07:002022-05-03T19:26:44.613-07:00Chronic Illness - Buzz Words and Trends in Self Care <div style="text-align: center;">
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<span face=""helvetica neue" , "arial" , "helvetica" , sans-serif"><b><a href="http://radiabetes.com/blog-week18/day3.html" rel="noopener" target="_blank"><span style="color: blue;">Mindfulness </span></a>– </b><i>What does mindfulness mean to you and how can it help as we live with our autoimmune condition?</i></span><br />
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<span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">Can I tell you a little secret? I have an almost instant allergic-like reaction to certain words... They're usually the latest trendy buzz words - like mindfulness. Gratitude is another. It's not limited to words. You know when there's a massive amount of hype about something? A new book, a movie, a place to go...? That will be the book I DON'T buy, the movie I DON'T see, and the place I DON'T go... I know it's perverse, and I know it's a bit ridiculous, but there you go - it's how I react. </span><br />
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<span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">So, I saw that this prompt had made it through the voting process, and wasn't happy. I thought to write today on one of the wild card topics. But I wasn't overly grabbed by those either, as they don't apply so much to the situation here in Australia in the way they do in the States. *sigh* What to do...? </span><br />
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<span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">There's also the whole debate around analgesia and the beginnings of a move here in Australia away from opioids as a first option for treating severe pain - in exchange for cognitive therapy, meditation, para-medical treatments such as massage and physiotherapy, and...MINDFULNESS. And, I'm sorry, but if someone tells me they're going to take my pain meds away from me and exchange them for those alternatives, they're going to have a fight on their hands! Because despite what all the people who are currently making hell for chronic pain patients say, opioids DO work for the chronic pain caused by a degenerative, inflammatory disease. <br /> </span><br />
<span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">So I Googled 'mindfulness' and found an Australian government website with a short - 2 minute read - you can read it <a href="https://www.healthdirect.gov.au/mindfulness-and-mental-health">HERE</a>.</span><br />
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<span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">So, here's the thing...according to that definition, I already practice mindfulness. Who'd a thunk?! </span><br />
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<span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">Back in the day, in the early months and years of having RA, I used to journal with a friend. She also had autoimmune illnesses, and like me, is an artist. So we journalled, often together, and as well as writing, we drew and painted in our journals, sometimes showing each other what we'd done, and talking about what the imagery meant for us. We also talked about the process of journalling, and how that made us feel - what was helpful, what wasn't. And the drawings and paintings - how THEY made us feel. Quite often, for both of us, they were a fairly unconscious process - the antithesis of mindfulness. Neither of us ever planned them, per se... There was no consistency as to whether we did the art work before or after writing. And for both of us, most of the time the imagery that emerged was pretty spontaneous. Sometimes, that could be a pretty spooky experience. And the finished imagery was often quite confronting. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAphSjol1XgIJMbFJvAcJMgRZnXyER_UA-_dsmuljmDc9g-LC4N7PkTuCeqAzdZfP-m2-rzap54DkWroEuF1GZ0ag_54wwgBGlVYulOd3t0nZCYlLpAEim80aEB4NFiTlRnIcjPXLY2WUf/s1600/RA+20_Fotor.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1224" data-original-width="1224" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAphSjol1XgIJMbFJvAcJMgRZnXyER_UA-_dsmuljmDc9g-LC4N7PkTuCeqAzdZfP-m2-rzap54DkWroEuF1GZ0ag_54wwgBGlVYulOd3t0nZCYlLpAEim80aEB4NFiTlRnIcjPXLY2WUf/s320/RA+20_Fotor.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">Into the Vortex, Mixed media on cartidge paper, 20.11.94</span></td></tr>
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<span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">Journalling is an activity that's often recommended for people with chronic illness, as a means to get emotional stuff that we may find difficult to talk about OUT of our heads and to a place where we can perhaps process it a bit better. In a sense, blogging has become that for me, when I AM blogging... Like blogging, journalling requires commitment - making time each day to do it. Beginning the process can be difficult, because it can feel selfish, and self indulgent - especially if writing isn't your thing, or you've not typically taken time out specifically for yourself. </span><br />
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<span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">It's a MINDFUL process though, journalling, and blogging. It requires self examination, and taking time to stop and monitor where we're at. And while I might not always be writing regularly, the past habit of journalling and blogging means that that self monitoring process is something that I do - whether I'm writing the stuff down or not. </span><br />
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<span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">When I draw and paint, the activity takes me to a different space in my head. I did an activity earlier this year shortly after signing up to Instagram - after MUCH pressure from a number of artist friends. Those same friends then started encouraging me to do the #100DayProject. It's an international online event facilitated by a pair of artists whose names I can't recall at the minute, and I can't remember - #brainfog - how long it's been running. Essentially, it's a creativity project. You choose a creative endeavour - it can be absolutely anything, and the diversity among the participants was one of the wonderful things about being part of the event - and commit to do something with that EVERY DAY for 100 days, and post with the hashtag so everyone can see each other's work. </span><br />
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<span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">We're VERY broke at present. Part of the stuff I've not been blogging about for almost a year has been Dragon Dad's changing work situation - which is still in a state of flux. Needless to say, that's meant our financial situation has become increasingly precarious, and at this point, the only thing that's kept us in our home, fed and surviving, has been help from some very generous friends. So, for me, embarking on a creative project over a decent span of time dictated very much what I could commit to in terms of materials - art materials aren't cheap, and there just isn't money for anything beyond absolute essentials. But I had pencils, and I had lots of art journals that weren't full, so I decided on graphite drawing as my process. </span><br />
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<span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">Every afternoon - most days...there were some glitches along the way, and I also got back into the habit of carrying a wee journal and clutch pencils in my bag and did some drawing while out and about - I'd settle down to draw. And let me tell you, going back to basics just armed with a pencil is perhaps one of the toughest things an artist can do. There is NOWHERE to hide, no colour to distract...just the graphite on the white paper and a drawing of an object that might or might not have worked! </span><br />
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<span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">The mental focus required is immense, and I found myself starting, after the first couple of weeks, to feel that my day had lost some necessary balance if I didn't draw. Most of the time, I was, essentially, working with still life. I'd scrounge around the house looking for something to draw, drop it onto a board on the table, then sit and work away until I'd rendered the object to my satisfaction. I drew loads of fruit and vegetables, my shoes, sewing oddments like old cotton reels. The day I decided to draw some knitting I had on the go - well, that might not have been the most sensible decision... The cats - when they were sleeping. Had to be quick with those, because the little blighters could FEEL my attention on them, I'm sure, and would invariably move halfway through. I am right handed, so my left hand was always there if I couldn't think of anything else. And if I was out, I'd draw the people around me in cafes and markets.</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4PFboCgIZ-UfXE9aHWn6zrr27hOlpK0Lh6J-l_Kz0fqT0dDV6yxVHOi-L58Ccfc5QOb6CJudg5N6zD3SPJT84bDRmX9SRjFwN3K9oigLCJQ_87AOQnTPnxI3jpwQWLB_295mPc0b3McgZ/s1600/DrawingsForDMBlogCollage.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="800" data-original-width="1600" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4PFboCgIZ-UfXE9aHWn6zrr27hOlpK0Lh6J-l_Kz0fqT0dDV6yxVHOi-L58Ccfc5QOb6CJudg5N6zD3SPJT84bDRmX9SRjFwN3K9oigLCJQ_87AOQnTPnxI3jpwQWLB_295mPc0b3McgZ/s400/DrawingsForDMBlogCollage.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">#100DayProject drawings, graphite on cartridge</span></td></tr>
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<span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">Drawing like that is very much about being in the moment. You have to coordinate hand and eye movements to take what you see and lay it down on the paper. It's something I've done since I was a child, and then reinforced with formal training at art school. It informs the way I look at the world. When I look at what's around me, I don't just see people, scenery, buildings, stuff.... I see shapes, lines, colours, shadows, patterns. </span><br />
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<span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">I'm also a photographer. I participate in a daily photography challenge via a group on Facebook. Ever day we have a prompt to use, and ultimately, it means for all of us - and this is a thing that gets discussed in comment threads in the group - we see the world around us much more acutely than we did. For me, it's another layer of looking on top of the way I was already looking at things. Now, in addition to the shapes, lines, colours, shadows and patterns, I'm framing things. I photograph within square formats, for the most part - something I started doing after signing up to Instagram, as rectangles get amputated there...and even on FB, large photos get compressed by the site. But I also like the square as a tool. It's EASY to offset an object in a rectangular format and achieve a balance of the negative space. A square, because it's a perfectly even shape already, makes creating asymmetry within it much more challenging, and I do love a challenge. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwXJC_KSTyao_9n5qwSs-Av0WiE7LCRYjYpu0-aZW-PbeWySXgbB4iNNHPyP0ZbSag2Oi-TTeLKUGzdcawGE-uGIRmhWVDv_rjcZnb0D9ZIisL65rJaxoWlGbWdyUnuVEpgsHSLBf_Fgwo/s1600/DragonMotherCollage.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="800" data-original-width="1600" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwXJC_KSTyao_9n5qwSs-Av0WiE7LCRYjYpu0-aZW-PbeWySXgbB4iNNHPyP0ZbSag2Oi-TTeLKUGzdcawGE-uGIRmhWVDv_rjcZnb0D9ZIisL65rJaxoWlGbWdyUnuVEpgsHSLBf_Fgwo/s400/DragonMotherCollage.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">Selection of photos from this year's Photo a Day</span></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"><span face=""helvetica neue" , "arial" , "helvetica" , sans-serif"><br /></span></td><td class="tr-caption" style="text-align: center;"><span face=""helvetica neue" , "arial" , "helvetica" , sans-serif"><br /></span></td><td class="tr-caption" style="text-align: center;"><span face=""helvetica neue" , "arial" , "helvetica" , sans-serif"><br /></span></td><td class="tr-caption" style="text-align: center;"><span face=""helvetica neue" , "arial" , "helvetica" , sans-serif"><br /></span></td><td class="tr-caption" style="text-align: center;"><span face=""helvetica neue" , "arial" , "helvetica" , sans-serif"><br /></span></td></tr>
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<span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">So, as I've often discovered in the past when I've refused to read that book everyone's talking about, or go see that movie that is making waves, I find that my daily practice as a creative - whether I'm writing, drawing or taking photographs - has instilled in me, by default, a practice that is akin to mindfulness... How very humbling that feels. </span></div>
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<span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">And what does that do for my RA? Well, I write because I've always written - academically, professionally and for myself. It satisfies something in me to craft a story that sometimes others will read, and sometimes not. That's not the point. I'm MAKING something. I joined the photography group to give myself a daily practice, at a time when I felt quite lost and didn't have anything like that happening. I also found wonderful people in that group, who have become good friends, some of whom I've been able to meet face to face. And it was some of those people who pressured me onto Instagram, and then into the #100DayProject (I have to add, incidentally, NONE of them did the project...so I was left out there like a shag on a rock!!). And that's lead to me beginning a rebuild of my professional art practice.<br /><br />All of these things have brought me back to daily practices of creating, back to myself and the person I am - the person I was pre-RA and the person I STILL am, despite the disease and the changes it's brought to my life. They offer distraction. They make me get up, get dressed, and leave the house, in search of things to photograph and draw and write about that are beyond the confines of our home. And they are mindful practices, in and of themselves that make me be very aware of what's going on around me and how I respond to that. </span></div>
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<span face=""helvetica neue" , "arial" , "helvetica" , sans-serif">It may not be the mindfulness that's touted as an alternative/complimentary mode of treating chronic pain. But it's MY mindfulness. It's the stuff I do to make sense of my days. And the stuff I do that gives me a reason to keep going. So I don't particularly care if this is a somewhat unorthodox take on the concept. It's working for me. And that's enough.</span></div>
Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com8tag:blogger.com,1999:blog-679982583847135662.post-18109588110278317432018-09-24T19:18:00.001-07:002018-09-24T19:18:24.209-07:00Rheumatoid Arthritis - Tips and Strategies for Living Well<div style="text-align: center;">
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<strong><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgc8tXNuwsreMO9WeoOedOgJHBtxboQ6TiH5TW2LXyPg9dYvtiNv8YKsCooCGDAh-5Vn7bHI43rPA-Rhzp2RrWeUt9M0IJGd8aIn0vL_lggUtA8sQH6-UMF-qG4h_0skahnmKe99jNvT94e/s1600/2018RABlogWeekBadge.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="472" data-original-width="674" height="224" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgc8tXNuwsreMO9WeoOedOgJHBtxboQ6TiH5TW2LXyPg9dYvtiNv8YKsCooCGDAh-5Vn7bHI43rPA-Rhzp2RrWeUt9M0IJGd8aIn0vL_lggUtA8sQH6-UMF-qG4h_0skahnmKe99jNvT94e/s320/2018RABlogWeekBadge.png" width="320" /></a></strong></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><strong><span style="color: blue;"> </span></strong><a href="http://radiabetes.com/blog-week18/day2.html" rel="noopener" target="_blank"><strong><span style="color: blue;">Tips</span></strong></a><strong> – </strong><i>How do you stay fit, cope with stress, relax, or capitalize on a great day. Tell us your secrets for the best life possible.</i></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I've had RA for twenty-six years now. I look at that number and it boggles my brain, to be honest. I've been sick for nearly half my whole life... As a concept, that just seems ridiculous - but unfortunately, it's my reality, as it is for far too many people.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">What twenty-six years gives me though, is two and a half decades of experience living with this disease. On social media, in some of the support groups, they call people like me veterans...and for good reason. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Mind you, for me it's a bit complex as there have been two distinct phases of my disease - the long, slow deterioration of mild disease that just chugged along in the background, and only really completely sidelined me if I'd been stupid enough to forget it was there and push myself to limits that would have been an issue for someone completely healthy. And then there's post 2013, and sudden severe and very active disease that can totally floor me for no other reason than the normal ups and downs of the disease itself. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">As I type, my hands are screaming at me. I DID make more bread than I usually do over the weekend, given the meals I cooked, and two of the batches did require a little kneading - our house bread doesn't...check out <a href="https://theoriginaldragonmother.blogspot.com/2016/05/no-knead-bread.html">THIS POST</a> for a brilliant bread hack if you want to make your own and it's the kneading that's stopping you!<br /><br />I digress... </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I'm going, for the purposes of this post, to address this more recent phase, as the reality of the changes since 2013 have felt, at times, as if I've been newly diagnosed. I've had ALL of the fears and panics that I had back in 1992 with the original diagnosis, and this time, they've proven to have far more foundation than they did back then. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><b>Working </b></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I freelance. I was writing professionally alongside my job - something I'd been doing since 2004. So I have continued to do that, scratching around for any paid opportunity I can find. It's work I can do in my PJs, and even in bed on a bad day. I make my own schedule. When, as they are today, my hands are particularly bad, I use compression gloves (note to self, go and get them on NOW!) and I work in small bursts. <br /><b> </b></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So, if working a regular job is an issue for you, look to your skills. What are the things you do well - in the workplace and recreationally? Is there a way you can turn that into a business or a freelancing activity so that you can work flexibly from home? If you think you can, go for it. In addition to my writing, I'm also slowly rebuilding my art practice, and hopefully that will begin to pay off as I find more places to exhibit and hopefully start to pick up commission work. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><b>Household stuff</b> <br />I'm a creative - I don't find housework a creative activity...so it's never been a huge priority for me to have a spotless house. Dragon Dad is a bit of a neat freak, and really likes things tidy, so it's been a huge learning experience for us to settle into a compromise situation that doesn't drive us both bonkers. We're also living in a very small house that doesn't have space for me to have a workroom, so my desk is in a corner of the living room, and my art studio is our dining table... Creative chaos, I call it - he often calls it a mess! </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">DON'T sweat the small stuff. Outsource, if you can afford it. Get a cleaner to do the work that is painful and exhausting so you have energy for other activities that bring you joy (unless you're one of those odd souls who likes cleaning, in which case, just go for it!). We can't afford a cleaner. So, Dragon Dad does all the heavy cleaning. I can, and do, sweep the kitchen floor every day or so. Any more than that will render my hands useless, and then I can't write or draw. Not negotiable. So he does that. He hates washing. I do that - cos the machine and the weather do all the real work of cleaning and drying the clothes. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I do most of the cooking. I've simplified a lot of things I do... Also, we are eating very simply because we just don't have the money for all the good stuff right now, so all my <i>cucina povera</i> skills from years living as a sole parent are on in full force. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">When it comes to food - EAT WELL. I can't stress this enough. Our bodies are under siege from the disease. We do ourselves no favours at all by eating badly - and by badly, I mean taking too many shortcuts with packaged food, skipping meals, and not drinking enough water. There's no reason at all, even on a tight budget, and when we feel like crap, for not eating well. And eating fresh. I wrote <a href="https://theoriginaldragonmother.blogspot.com/2017/03/rheumatoid-arthritis-when-youre-flaring.html">THIS POST</a> some time back with a bunch of my food strategies to cover the times when I'm really not feeling up to cooking much, but that don't short change us on either nutrition or flavour.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">A household is a collection of people. For us, it's just the two of us. Back in the day it was my two boys and me. It doesn't matter how many or how few people live in your house, it should be a collective. It should NEVER be the job of a single person to be responsible for every part of maintaining it. For those reading how have kids at home, a browse across the whole blog will show you that I believe kids should be contributing at whatever level they can manage from the get go. Little children can wash dishes, pick up after themselves, peel vegetables, pair socks, etc. Teach them to cook and be involved in meal prep - they should be able to put a meal together on their own by the time they hit their teens, if not before. Similarly, they can learn to weed and grow vegetables, and older bigger kids can mow lawns and wash cars. They can, incrementally, learn the skills to be completely responsible for their own bed linen and clothes - changing and washing sheets and doing their own laundry. And they can run vacuum cleaners and push a broom. Remember - if they can run a smart phone, they can do ANY of this stuff, and there's no reason on earth why they shouldn't be contributing to the household that supports them. And with partners, the household should be a shared responsibility. So, negotiate between you who does what, according to what you can and can't manage and the things you like and dislike doing. Chances are, it'll fall relatively evenly down the middle. As far as childcare go, if you're partnered and have children, you are both parents... Dad's don't babysit, they parent. So share the load. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><b>Friends and family</b></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">These are the people you'd think will always have your back, and in an ideal world, they would. Unfortunately, our world is far from ideal, and I've heard some awful stories from people who've lost friends, and have very difficult times with family members with issues around being sick. I have to say, I've been very fortunate for the most part in that regard, and haven't lost too many people. I HAVE weeded people out though...that's sometimes been necessary. Any relationship that causes more stress than joy is going to take a toll, so if there are people like that in our lives, we need to think seriously about whether that's good for us or not, and take appropriate steps. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">One critically important thing though - and I MUST address this, because I see SO many comments in the support groups around this, and have far too many conversations about it with various people. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">CUT THE GUILT. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I hear - all the time - people, particularly women, saying they feel bad for not being the mum they 'should' be, or the wife, partner, whatever... It's NOT your fault that you're sick. You got sick, you didn't make yourself sick to make other people's lives difficult. So, in the first instant, there's no need to feel guilty about being sick, cos you can't help getting sick. And secondly, anyone who gives you grief about their lives being more difficult because you're sick is an arsehole. And it's THAT simple. because thay's a cheap shot at you, when they don't have the decency to deal with how they're feeling about whatever prompted the cheap shot, which is just bad behaviour, and there's no excuse for that. Anyone that does that to you regularly is a major arsehole and shouldn't be in your life. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Be OK with saying no if you can't manage something. If you can't do it, you can't do it and that's really all there is to it. And it's not up to you to then have to find solutions for other people - not for people old enough to do that, and that includes older kids. Our own kids, well, yes, their lives ARE affected by having a sick parent. But that doesn't have to be something that's seen as ruining their lives. Because it needn't. Sure, there might be things youcan't do with them, but there'll be a ton of things you CAN do, so focus on those. Let other people do the more physical things and share the love. When it comes to doing things FOR other people, well, that's one of the great joys in life for me. But I do need to temper that and make sure that I don't over-commit myself, because saying you'll do something and then not doing it is worse than saying no in the first instance. So if you know you might not be able to follow through, be honest - with yourself and the other person, and say no. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I could go on and on and on...there are so many things. But I need to stop typing so I can paint later on and finish the piece I'm working on. And I need a shower - having taken on posting for RABlog Week, I promised myself to write and post before I shower every day to make sure it gets done. I slept late this morning. It's gone midday now, just, and I'm still in PJs and I need to get dressed! </span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">My bottom line is, put the things in place to live the life you want to live, RA and all. FIND the things you love to do and DO them. Say no to the things you don't want to do or cant do. Strive to create balance in your life so that it's sustainable. Make sure you have things in place that you want to get up and do. RA is a disease you've been diagnosed with. It isn't your life, so don't let it become the only thing in your life. </span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><b> </b><br /><i></i></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><b> </b><br /><i></i></span>Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com4tag:blogger.com,1999:blog-679982583847135662.post-60032641025168487862018-09-23T17:21:00.001-07:002018-09-23T17:21:23.103-07:00The Medicine - Pain Meds and Dealing with Doctors<div style="text-align: center;">
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: blue;"><b><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAVvh7is7N9Wp6Q6Pvlf0zwtrjRmt18_78MReTpkYgt8GbUpENzigXK6U0WB6KQStVeufRA5_SZqAdgWGlx-rjeYVGDf1MHB5NXAF3V3xzwFZhRBi1wylz-LrW1Xgw6fZ_lMThY0_XTWXB/s1600/2018RABlogWeekBadge.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="472" data-original-width="674" height="224" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAVvh7is7N9Wp6Q6Pvlf0zwtrjRmt18_78MReTpkYgt8GbUpENzigXK6U0WB6KQStVeufRA5_SZqAdgWGlx-rjeYVGDf1MHB5NXAF3V3xzwFZhRBi1wylz-LrW1Xgw6fZ_lMThY0_XTWXB/s320/2018RABlogWeekBadge.png" width="320" /></a></b></span></span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: blue;"><b><a href="http://radiabetes.com/blog-week18/day1.html" rel="noopener" style="color: blue;" target="_blank">The Medicine</a></b> –</span>
<i>Patients with autoimmune disease often are not treated well by Doctors
and Pharmacists when we ask for or receive prescription pain medicine.
What has been your experience? Share the good, bad and ugly side of
your experience.</i></span><br />
<br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">It's
September and RD (Rheumatoid Disease AKA Rheumatoid Arthritis) Blog
Week is on as of today. Once again, it's the spur to get me writing
again... I'll have to write a post at some point to catch up, as I've
been MIA for almost a year from the blog...and it's BEEN a year.
However, that can come after I get through this week - assuming I manage
to stay on track and post every day. Fingers crossed - as far as they
will anyway. <br /><br />So, the topic... Medicine. This isn't one of the topics I'd have chosen, but I'll have a go anyway... <br /><br />My
biggest issue with the RA meds and analgesia has been having to take
the bloody things in the first place. Like many people, I really don't
like taking drugs - one of the reasons recreational drugs have never
appealed to me, which is probably a good thing! So being in a situation
where I have a whole raft of medications that I have no choice about
taking is not easy. <br /><br />I have to say though, unlike many, pain meds, by and large, haven't been a huge issue for me - getting them, and/or using them. <br /><br />For many, many years, my RA was very mild and slow moving - the story of my diagnosis and progression can be found in <a href="https://theoriginaldragonmother.blogspot.com/2014/05/parenting-when-you-have-chronic-illness.html">THIS POST</a>.
I had a drug called Capadex (a combination of paracetamol and a small
dose opioid) on hand for when I flared - I didn't need daily pain meds.
It wasn't until the wheels fell off in 2013 (see the linked post) that I
had to change that. </span><br />
<br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">In
Australia, for the most part, GPs (general practitioners, or PCP, in
American terminology) tend to manage a lot of the prescribing and
monitoring of pain meds for chronic illness - they're the doctors we see
most frequently, they're the ones who can, if required, bulk bill us so
that we have no gap to pay, and they're the ones who know us best as
people. There are pain specialists - it's a growing trend here - but not
everyone sees one. I have seen them, over the years, at various times,
and if necessary, I'd see one again, but as long as I have a good
relationship with a GP who is happy to prescribe my analgesia, NOT
having to add yet another specialist doctor and the associated fees and
extra appointments is a GOOD thing! </span><br />
<br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">My
then GP, when I saw her about the increased disease activity and pain,
put me straight onto slow release Tramadol, AND informed me that it was
time for me to reconnect with a rheumatologist - which was
non-negotiable. </span><br />
<br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Typically,
here in Australia, rheumies don't prescribe pain meds. Now and again,
mine did, if I'd been running short, and he'd been the doctor I saw
first, to save me from having to make another appointment and run around
more. But it's been a courtesy on his part, rather than the norm. My
current one - our interstate move meant a total change of medical team -
itself, a mammoth task - has never prescribed any pain meds. </span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><i><br /></i></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">My
current GP is a specialist GP with an interest and research background
in chronic illness, so he's much better versed in pain management for
chronic illness than a lot of general practitioners. My first visit to
him - having discovered him in a local medical centre - was a script
visit. I'd not, at that stage, transferred my medical files from my
Sydney GP, because I didn't know who I'd be seeing regularly and didn't
want to have to doctor shop and transfer them for every visit. his
profile on the clinic website was encouraging. So I fronted up to a
brand new doctor, needing a prescription for Tramadol, a scheduled drug.
My usual script was an authority script that got me three packs at a
time (twenty tablets per pack) with five repeat scripts. I had some
remaining 50mg scripts, but none for the 100mg tablets. So, the
introductory conversation was had...he was clearly in a bit of a pickle,
because it was the first time we'd met. I COULD have been a drug
seeker, on a drug shopping expedition. We don't have the huge issues
here in Australia about scheduled drugs that's happening in America, but
there are concerns... In the end, he said that it was obvious that I
was very knowledgeable about my disease and very clear about my
medication history, so he rang and got me a script for the three packs,
but NO repeats. He wouldn't prescribe the Diazepam I also needed without
having my files. So, I had to make a quick decision based on that
single visit about whether or not he felt right for me, and get them
moved here. <br /><br />He's been very good. There have been two visits
where I've had to insist on a particular course of action...one time it
didn't go my way. But following on from a rheumatologist visit and
communication between the two of them the next week, that particular
issue was resolved. The second time, he had a med student in the room
and clearly didn't want to have to argue with me in front of the
student, and gave me the script for antibiotics I needed then - and was
visibly relieved the following week when I turned up for a second batch,
still VERY sick, that he had...and conceded that I'd known exactly what
I needed at the time. <br /><br />My disease is just barely controlled on
my current protocol. A year ago, I was regularly at the allowable limits
of the Tramadol dosage, and needing Endone - immediate release
Oxycodone - to top up through the night, particularly. When I went to
see him to discuss this, and what to do about pain meds, he just reached
for his prescription pad, and wrote a script for a Fentanyl patch. So
now I have one that releases 12mg/hour that I change every three days.
It's an authority script - meaning he has to call the authorities to get
me two boxes on the one script, which lasts me a month, primarily so I
don't have to be going in to see him every two weeks. I still have the
tramadol, but at a much lower dose, and on the good days, that means
just a 50mg tablet during the day, and 100mg at night. Currently, it's
100mg for both doses - we're just through the Jewish High Holy Days and
I've been singing in the synagogue choir, with attendant rehearsals, and
that's taken a huge toll on my body. </span><br />
<br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I
saw him last week for my regular appointment that usually opens with
him asking what he can do for me, and I just say, "I need drugs please!"
- and he laughs and picks up the phone. I've been on the Fentanyl patch
for a year now, so under Australian law with scheduled drugs, he now
has to apply for a permit to continue to prescribe it for me. He
continues to prescribe the Tramadol and Endone, and Diazepam (the latter
is a long term pain management strategy to keep on top of the muscle
spasms I get due to over and inappropriate use of muscles to compensate
for dodgy joints, which add a level of pain that becomes unbearable. A
low dose of Diazepam a couple of times a week keeps that from getting
out of control and lowers the necessary dose of analgesia. <br /><br />He
knows I don't have an addictive personality, and that I'm not addicted
to any of my pain meds. I'm highly dependent on them for 'normal'
function - as normal as my function actually is... But I'm not addicted.
I don't get high. Opioids used correctly for chronic pain don't make
you high. They just give relief and allow people like me to get out of
bed and actually function. <br /><br />He's the GP I wish ALL chronic pain patients could have. </span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com6tag:blogger.com,1999:blog-679982583847135662.post-88772466938354947212018-05-23T21:26:00.000-07:002019-05-17T23:46:08.469-07:00Elegy for Gab<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">It's been absolutely forever since I posted here. Initially, there was just too much going on, and a lot of it wasn't very good. It all got quite overwhelming, to the point that there was just too much to write about so I didn't write at all. And then, as things eased, I didn't know where to start to sum it all up and get back to posting, so again, I just didn't do it. So, perhaps that post - a summary - is for another time, because today isn't that time. <br /><br />Today I want to write about a good friend of mine who died suddenly last Friday morning. Her name was Gab - short for Gabrielle...a name she didn't feel comfortable wearing, and a name the rest of us had trouble making stick to her. The diminutive though, was perfect. </span><br />
<br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I met her online, in the photo group I've been posting in daily since the beginning of 2017. I've written about that a few times: and the daily focus it's given me, the re-awakening of my creative juices, the challenge of developing my photography skills when my only camera is the one on my iPhone. But the most important, and surprising aspect of this activity has been the people. I didn't expect the people. <br /><br />I've been on Facebook since 2008. I've had the predictable experiences of reconnecting with people from my past - OMG all the people from my school days who I wasn't friends with, who suddenly want to be my friend... What IS that?! Connections with various people from the present time - friends and acquaintances, some who live far away, and others that I see regularly. And then the friendships that develop via different interest groups, and those I've been able to meet in real life, face to face. Some of those encounters didn't amount to lasting friendships, any more than some of the 'in real life' ones. But some did. <br /><br />Gab was one of those. The photo group is ginormous. Currently, there are 26,177 members. Not everyone is active all the time, and not everyone posts every day. But enough do that my FB notifications can go crazy just from that group, let alone any other activity, and it's easy to feel quite lost among such big numbers. Early on, I noticed that there were lots of small groups, 'tribes', of people within the mass. People who'd connected particularly for any number of reasons. I was a bit envious of those folk. Reading the banter on the comment threads showed just how much enjoyment there was in contact at that level, and it became clear that there were some people that were managing to connect outside the group, on the ground. Photos of PaDster (Photo a Day, PaD. PaDster being our nickname for participants in the group.) meetups always drew loads of comments. <br /> </span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">And then it happened. Over the course of a month or so, via comment threads on particular photos, a group of six of us grew closer, drawn to each other by the photos, and then more so by the conversations in the comment threads. The The Catsuit Gang was born. Six women. Different ages, different backgrounds. Two in America - on opposite sides of the country. One in Germany. Three in Australia - two in Melbourne, and one in northern Tasmania. The two of us in Melbourne organised a meet up - that was easy. Lots of nerves. Lots of, 'OMG, how will I recognise you?' - directed at me, because I rarely have photos of myself online. We did the 'sensible' thing and met in a neutral space, a local cafe. Sensible, cos that's what you do with online people, right? Because they might be nutters. Only she isn't a nutter. She was as she is online. We met up a few more times. And then the great day came when the Tasmanian Cat was going to be in Melbourne and the three of us could get together on one day of her trip. <br /><br />It was as it had been in the group chat. Gab was exactly as she was online, only more so. We spent that afternoon talking non-stop and laughing so much. It was SUCH a good day. We drank loads of tea, ate good food, told stories, laughed lots, and just enjoyed each other. The photo I've included in this post is from that day. I posted it today in the FB group for today's prompt, 'a really good day' and the edit of black and white with a splash of colour is for a theme I'm doing with my other little tribe for this month. <br /><br />Gab was an amazing woman. Not well, physically, she struggled with a number of chronic conditions and illnesses, including anxiety. She valued family and friendships immensely. She was possessed of great commonsense, and always seemed to know exactly what to say when one of us was struggling with something. She had a wicked sense of humour. She was a truly gifted photographer - although, I'm sure she'd argue with that. During that trip to Melbourne, her photos changed as she focused on photographing Melbourne itself. She found the guts of what Melbournians recognise as their city, and did superb edits, knocking back the colour just enough for the shapes and subject matter to really shine without the colour being a distraction, but with enough richness still there to be immensely pleasing to the eye. She had a knack for observing and capturing the human condition, and there were some brilliant 'stalker shots' of strangers going about the the business of their day. </span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">At different times in her life, she'd followed various creative pursuits. She'd crocheted professionally for a while. She could draw. Wrote wonderfully. She never settled on one thing in particular though, always being hungry for new interests and things that would challenge her. She loved to travel and see new places, and we all enjoyed the photos she posted of different places, and the accompanying, sometimes sidesplitting, stories. <br /><br />She brought something rich and unexpected to my life, as part of our little gang. I think we all feel that. The online experience can be bizarre. People aren't always the way they present online. Gab was. She was an object lesson in how to be authentic online, and be consistent with who you really are. Meeting up with her, with the other Melbourne Cat, that day felt like we'd passed through some magical portal and instead of chatting online in the group, we were in the same space - it felt the same, only in real life. <br /><br />When she knew she was coming last month, we talked about meet ups. We planned a day at Ripponlea House, one of Melbourne's historic houses that's open to the public. It's a photographer's dream. We planned to pack a picnic for lunch, to save funds. We thought to start at the on site cafe to fuel up with caffeine, then wander and take photographs while we caught up, and then picnic. That was the plan. Life got in the way. Things changed that day, and in the end, we relocated to my house again. Gab came earlier in the day, and then the other Cat joined us for dinner. Dragon Dad got to meet her this time too, and loved her. Said she was hilarious - which she was. When she headed off at the end of the evening, she was talking about her next trip across, and things we might do. And as always, we talked about a grand gathering of the Catsuit Gang. Quite where, geographically, has long been a puzzle, given how widely scattered we are. And the money of course, as none of us are millionaires. Sadly, when that gathering does eventually happen, we will be five, not six. <br /><br />But Gab will always be part of our gang. She's left us with a rich legacy of 'Gabberisms.' And as we all trawled back through our conversations with her, on comment threads, and in various chats - group and one on one - we found many treasures. Perhaps one of the most meaningful, particularly for me as it was a comment in response to a post I did with a photo of my mother for the prompt 'I wish,' she wrote this:</span><br />
<br />
<blockquote class="tr_bq">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span class="_5yl5">What a special shot of a precious photo. It's beautiful. She was beautiful. This will sound so wrong right now on this post but here goes. Tears, sadness and regrets are probably not the way to remember her, lovely Karen. While those feelings will almost certainly remain, holding her memory in the joyous and simple times can be helpful. You were lucky to have her for as long as you did. To know her as a woman and person as well as your Mum. I never got that chance. Only the good die young I suppose.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span class="_5yl5">Try turning it a little. Let the grief and sadness turn into thankfulness that you had her in your life at all, even for a short time. While the pain never really heals, you can use it to become the person you know she wished for as a daughter.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span class="_5yl5">Maybe I'm a little too practical but I can't see that any parent wants their child to feel the broken soul feelings that I sense in your words hon. She will not be diminished if you can smile and laugh when you remember her nor would she be content to know you feel guilt for not foreseeing the impossibly unexpected.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span class="_5yl5">It's been 37 years without a Mum for me and while I might wish things had been different, they weren't. I can't change that or it's circumstances but I can remember her with a life and laughter that honours her existence in love. <img alt="😊" class="_1ift _2560 img" src="https://static.xx.fbcdn.net/images/emoji.php/v9/z1e/2/16/1f60a.png" /> <img alt="💛" class="_1ift _2560 img" src="https://static.xx.fbcdn.net/images/emoji.php/v9/zb4/2/16/1f49b.png" /><img alt="💛" class="_1ift _2560 img" src="https://static.xx.fbcdn.net/images/emoji.php/v9/zb4/2/16/1f49b.png" /><img alt="💛" class="_1ift _2560 img" src="https://static.xx.fbcdn.net/images/emoji.php/v9/zb4/2/16/1f49b.png" /></span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span class="_5yl5">Wear white to my funeral and celebrate for I am going to a better place and it is you who will remain in this turmoil called life. <img alt="😊" class="_1ift _2560 img" src="https://static.xx.fbcdn.net/images/emoji.php/v9/z1e/2/16/1f60a.png" /></span></span></blockquote>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">The emojis won't go smaller, and they make it messy, but I'll leave them, because she put them there. That smiley face and the yellow hearts were her signature emojis, '<span class="_5yl5">To me they epitomize my existence. Live, love, smile and be happy. Love and laughter have always worked well for me!' </span></span><br />
<br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span class="_5yl5">So, as sad as we all are, we're only too aware that she'd be very cranky if we sat around weeping for her. Friday, when we heard the news was such a dreadful shock, and we were all in pieces. Today, knowing she's being laid to rest and none of us could be there, has been very hard, and I've been teary, so I'm hibernating at home. But to honour her, we'll all have to pull our socks up and get on with living life as it comes, finding the humour, as she would have, and looking after ourselve and each other. </span></span><br />
<br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span class="_5yl5">Zichrono livracha. Gab, you will be missed. </span></span><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWICXS0kfqVoPOanlu-mE6iAaapkETChwCkdGFvM0jhfMPEkJz2ienFmv-mdG57p8ba_cQHPY4i3KT5fiTizBVag77H0H0snMEaUYDk94Mj4XT9-CAhgBvOqPqimVR3_CI5-qkA-JP_R5v/s1600/FMS_24.5.18_AReallyGreatDay_CatVisit.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1519" data-original-width="1600" height="303" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWICXS0kfqVoPOanlu-mE6iAaapkETChwCkdGFvM0jhfMPEkJz2ienFmv-mdG57p8ba_cQHPY4i3KT5fiTizBVag77H0H0snMEaUYDk94Mj4XT9-CAhgBvOqPqimVR3_CI5-qkA-JP_R5v/s320/FMS_24.5.18_AReallyGreatDay_CatVisit.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">That first Melbourne get together. Photo by Gab. Edit by me. </span></td></tr>
</tbody></table>
Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com8tag:blogger.com,1999:blog-679982583847135662.post-45016490082951648172017-11-23T22:49:00.004-08:002017-11-23T22:51:05.687-08:00Rheumatoid Arthritis: When things change<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">It's official. Orencia is failing for me... I've had a month from hell already, and at day 4 of this month's infusion cycle of this last dose, all the side effects have kicked in - headache, now lessening a bit, and snotty sinuses, plus two afternoons completely crashed on the couch - but no noticeable benefits that I can feel. Still in quite extraordinary pain, and at the max level of analgesia that I can take and still drive, hold lucid conversations, and function, albeit minimally...</span><br />
<br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Saw the rheumatologist on Wednesday, as scheduled. This last three months since I last saw him has been very much a monitoring period, so I don't think he was entirely surprised to see I'd deteriorated, but I do think he was surprised by just how much. So there was no hesitation on his part about moving straight to the conversation about WHICH biologic to try next, once he'd had a good look at my joints which are all noticeably swollen and red - and, as he discovered when I hit the roof, painful! </span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">The upshot was that an application for Xeljanz has now been sent for approval by the Prescription Benefits Scheme (PBS). There shouldn't be any issue with the actual approval. I just have to hope that there isn't any backlog to hold up processing mine. It should be in my letterbox in two weeks - that's what they always say...but there can be delays sometimes. I can't start taking it until I reach December 21, which is when my next infusion would have been due, but I want it here, and the script filled, ready for that day...because if, as it seems so far, I'm not going to get any benefits from this last Orencia infusion, I'm in for a month that is going to be very, very difficult. </span><br />
<br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">And then, Xeljanz. It's the first oral biologic to hit the market, and was added to the PBS lists just over two years ago. It's been in use overseas for quite a bit longer - around seven years now, I think. It's a daily tablet - so no more needles, YAY. Great news for a needle-phobe like me. And no more being tied to a monthly hospital admission which, apart from the timetabling of that, also put me into a hospital environment, isn't the best place for someone who's medically immune suppressed. A daily dose also allows some control should there be any drastic side effects - because I can just stop taking it and have them, hopefully, reverse quickly. And that's a concern for me starting any new drug, as history has shown that my body is extraordinarily sensitive to medications, and in the past I've had some severe and unusual side effects from various drugs, some of which have been potentially dangerous. Also on the up side though, is that Xeljaz doesn't - from what I hear anecdotally - tend to contribute to weight gain the way Orencia does, so it might be that I will finally be able to start shedding the kilos that have stacked on in the three years I've been on Orencia. There are frequent reports of gastric upsets with Xeljanz - that's a worry...but for most people, those do subside as the body adjusts to the medication. It can - being oral and being processed via the liver - be a problem for liver function, so that will be monitored, as will my cholesterol levels, because it can also affect those. And right now, my cholesterol is low - so I can eat everyone's cheese - and I don't want that to change because, cheese, people! However, all those worries can just sit in a box until I've got the script and the medication. For now, I just need to get through this next month. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">As I said, my joints are now very painful - constantly. My hands, wrists, feet and ankles are noticeably swollen. I have a running joke with a few friends that relates to a common question we get asked by doctors examining us - 'Can you make a fist?' Well, I can't, but I can make a damned fine set of binoculars...! For those readers who don't have RA or another form of autoimmune arthritis, indulge me for a moment and stop reading, so you can clench your fists tight, and then open them out big enough that if you look through them, you have a clear line of vision. That's how far I can currently close my hands...there's too much swelling for me to make an actual fist. I'm not wearing any of my rings either, because most of them won't go on - those that do won't come off again easily. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">What's the pain like...? It's hard to describe pain to someone else, particular someone who's not in pain. There's a constant dull ache, a hard dull ache...if that makes sense. That's pretty much everywhere...and it's exhausting. I can feel it no matter what I'm doing. As soon as I move, the skewers start... Hot, painful jolts that rip through the joints. I'm walking with care, I'm thinking about how I'm going to sit down, get in or out of the car, get up out of a chair - thinking and planning each step of any large movement. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">This has been going since the infusion I had before the one this week. I'm tired. Desperately tired. Pain is exhausting. I'm not sleeping well. I'm not sleeping enough. I'm a bit stir crazy, because I've not been out much. I've been doing our grocery shopping in small bites rather than one big shop. And yes, I could order online, but the supermarket websites are really clunky and the times I've done that I've inevitably ended up with odd things that aren't the things I thought I ordered... Plus, leaving the house means I also stop and have a coffee, talk to the people in the cafe - human contact and a really normal activity. I need those normal things...</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Yesterday though, I went with a friend into the city to meet another friend for lunch. All three of us have autoimmune diseases, so none of us had to put on a 'game face' - because we all get it. My friend who lives locally picked me up and we drove to my nearest railway station and took a train into the city. The place we were meeting is alongside the city station so that made it easy. And we had a fabulous afternoon. We both both crashed early last night and today, we're both absolutely knackered - how the third musketeer pulled up this morning, after having to go on and work last night, we don't know. But, as Dragon Dad astutely mentioned last night when he could see how exhausted I was, we had a great time together, the three of us. Lots of laughter, lots of stories, some good food, and wine, in a very pleasant setting - SO worth the effort and extra pain and exhaustion. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Small, simple things that are just such normal activities. Normal activities that can start looking like impossible mountains when you're as sick as I currently am. But mountains that CAN be scaled if the right things are put in place, to make them possible, and to not create further fallout afterwards. But normal is good - it reminds me that I'm still here, still me, even when I'm feeling utterly crap and life is beginning to feel small... So, that's the mandate until I can start the new drug - to schedule regular NORMAL social activities when I can so that even if this month is as difficult as the last one has been physically, there's some light, and laughter, and good people, and normality in the face of this crappy disease. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwotsn91PpktGjPjSzd-24i6b2f3b2y7LugOUmcVu9PS_myPuwPLaYuDAB6oOaUYhfr_CO1jCRd6tVlZ6BtjwBHTxdaoeJvhBZr2UiZascaUdL_ZtMIyIKnGumirxVz3L3Dhr6bbiU1JDb/s1600/JodieVanessaMeSouthbank_23.11.17.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1034" data-original-width="1600" height="206" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwotsn91PpktGjPjSzd-24i6b2f3b2y7LugOUmcVu9PS_myPuwPLaYuDAB6oOaUYhfr_CO1jCRd6tVlZ6BtjwBHTxdaoeJvhBZr2UiZascaUdL_ZtMIyIKnGumirxVz3L3Dhr6bbiU1JDb/s320/JodieVanessaMeSouthbank_23.11.17.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Three arthritic chicks doing lunch!</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Really must remember to put on some makeup before I go out socialising next time, and perhaps consult an expert on doing something about what appear to be my non-existent eyebrows! </span>Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com10tag:blogger.com,1999:blog-679982583847135662.post-41845430369583337952017-11-14T23:07:00.000-08:002017-11-14T23:07:00.081-08:00The majority of people in Australia have said YES!<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">It's a big day here in Oz! Finally, thirteen years after John Howard's coalition government voted to change the Marriage Act to define marriage as something between 'a man and a woman,' the people of Australia have shown that they support same sex marriage. My Facebook feed has been a happy place - so many photos, rainbows, hearts, happy faces. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">However, there is work yet to do. While the result - 61% saying YES - is excellent, it isn't binding. This should never have been conducted via this non-binding public 'survey. The campaign unleashed three months of deliberate scaremongering and misinformation from the 'No' side. Those on the 'Yes' side were accused of trying to force the issue too, at times. My gut says to me that those occasions were more likely born of years of frustration, watching other Western countries around the world creating legislature that made marriage between ANY adults possible, while Australia dragged its heels, the religious right factions within several generations of governments blocking any useful discourse that could have enabled the government itself to vote on changing the law - as should have been the case. But real harm has been done to members of the LGBTQIA community and their families as a result of the viciousness of the 'No' campaign. That is reprehensible.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">In the wake of the announcement this morning of the 'yes' vote coming through in the majority both the prime minister, Malcolm Turnbull, and the leader of the opposition, Bill Shorten, have committed to get legislation through 'before Christmas' that will resolve this once and for all. Turnbull, of course, has a vested interest in getting the job done - his government is currently in the minority, due to the dual citizenship issues among his members, the polls show a continued swing in Labor's favour against him, and if he doesn't push the legislation through, it will almost certainly contribute significantly to a loss in the next election - particularly as Bill Shorten has already used promises to enact a change in the legislation at the last election, and will certainly use it again if we go to the polls without the law being changed. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">And so, regular readers might be curious now, as to why I'm writing this post. It's not about RA, it's not about parenting, it's not a recipe...so why has the Dragon Mother suddenly decided to dip her toe into politics, you may be asking. What, if anything, has this event got to do with her? </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Personally, for myself and Dragon Dad, it has absolutely nothing to do with us. We're not married. That may change in the future. And there's nothing in the laws of the land that would prevent that happening. When - WHEN - this legislation goes through, that will still be the case. It won't change a thing for us. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">No.1 son is in a long term relationship, also not married. But, should he and his girlfriend make a decision to get married, they too - like us - would have no legal barriers. The Stepson has recently ended a long term relationship, and is footloose and fancy free, for now. But again, should he meet a girl and decide he wants to marry her, that will be easily achievable. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">No.2 son though, is gay. He came out to me nine years ago, when he was seventeen. He was combative about his announcement - fairly typical of him, when feeling vulnerable. He introduced me to an early boyfriend on one of my visits back to his hometown - again, in a combative style, which rattled the boyfriend at the time... I don't know if he's currently in a relationship or not, as he is still not communicating with me - for some background to that situation, read <a href="https://theoriginaldragonmother.blogspot.com.au/2014/11/your-kids-and-hard-drugs-when-to-step.html">this post</a>. If past experience plays out, that will eventually change and hopefully we'll be back in contact. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">However, as the law currently stands, should he be with someone and wanting to marry, he can't. And that isn't right. Why should one of my sons be able to marry and the other one not? There's no good reason for that - none at all. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So, today, I rejoice, along with those in the LGBTQIA community. I rejoice with them and for them. Sooner or later now, these laws will be changed, and people's gender preferences and sexuality will no longer be a barrier to marriage, for those who wish to be married. Among them is my son, who will have the same freedoms as his brother, and his parents. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFXtVBeWcZlYXw-T0h2bGFbbBKY9kCrLgnx04wtL3D4r1GJSkZDasn40YVU1q0ICXHanTDt9LZ1xdZHfJAJbbO70oaQQXAkkcYE-j-IlKwhrW3PHf4_2VCaw8rT5IJjD1Rv6mj-pwnQGIv/s1600/FMS_5.11.17_Pink_SummerStormRainbow.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFXtVBeWcZlYXw-T0h2bGFbbBKY9kCrLgnx04wtL3D4r1GJSkZDasn40YVU1q0ICXHanTDt9LZ1xdZHfJAJbbO70oaQQXAkkcYE-j-IlKwhrW3PHf4_2VCaw8rT5IJjD1Rv6mj-pwnQGIv/s320/FMS_5.11.17_Pink_SummerStormRainbow.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">One of the more beautiful rainbows I've seen over my backyard lately</span></td></tr>
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Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com4tag:blogger.com,1999:blog-679982583847135662.post-16261861101087687512017-10-17T22:37:00.002-07:002017-10-17T22:37:45.185-07:00Rheumatoid Arthritis: What to do when you flare<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">RA is a nasty, unpredictable beast. It doesn't play fair - ever. Just because you're sensible about your activity level - not too much, not too little, just right... - it doesn't mean the disease will behave. Likewise, you can eventually find a sustainable drug combination, including good pain management, and you'll STILL flare. It really, really sucks. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So, what is a flare, and what can you do when one hits? </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Flaring is the term we use when the disease does a sudden ramp up in activity - resulting in increased pain, fatigue, that fluey feeling that isn't flu, extra dryness if you're prone to dry eyes and/or mouth, possible skin irritations, and any number of other disease symptoms. Sometimes a flare can give you a bit of warning with symptoms increasing over a few days. Other times - as happened to me on Sunday - you go to bed at night, and then wake up the next morning with one on full bore and just getting out of bed poses your first obstacle of the day. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">What can you do?</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">First up, refer to your pain management plan. For me, since my pain management review with my GP a little while back (you can read about that <a href="https://theoriginaldragonmother.blogspot.com.au/2017/08/rheumatoid-arthritis-new-pain.html">HERE</a>), that meant upping the dose of Tramadol in my morning meds from 50mg to 100mg to boost the overall coverage, on top of what the Fentanyl patch offers. I waited for that to kick in before I reassessed, as I have Endone on hand as well - short acting - to add another level, if required. It was, so I took that mid morning, and later in the day. And again at bed time, again a few times Monday, but didn't need it yesterday or today, although I'm still using the extra Tramadol at this point as the flare is slowly - oh SO slowly - easing. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Try - and this will sound counter-intuitive - try not to just go back to bed. Even though it hurts to move, if you don't move at all, you will seize up, and that just makes things MUCH worse when you do have to move. I did eventually park myself in a nest of pillows on the couch by Sunday afternoon, again Monday afternoon, and yesterday afternoon. BUT, I got myself up, showered and dressed - with significant rest periods between all of those things - each day. Dragon Dad brought me coffee from down the road on Sunday morning - I couldn't face the drive there - all 800m of it...that's how bad I was at that stage. Monday, I had to get myself to the GP for a new Fentanyl script, and then across to the chemist to pick it up. THAT little excursion was planned with military precision, and included a rest stop at my local cafe before getting in the car and driving to the chemist to get the prescription sorted. I crashed for the rest of the day before making a very simple dinner for Dragon Dad and I... Today, I've been up all day, I've been out, I've managed to do some work that came in - allowing for the fact that this is all extremely low key activity. I didn't get to tai chi last night - I knew by the end of the day that a 6.30pm class was just not going to be possible, and I'd have had to have slept in a corner of the school hall because driving home afterwards would have been a no go! So, do get up and keep yourself moving gently through the days. Do some gentle stretches, if you can, to ease potential muscle spasms. <br /><br />Eat well. Again, there's effort involved, unless you've got the funds to order in meals for a few days. But there are simple ways to maintain your nutrition that don't take too much effort. Read <a href="https://theoriginaldragonmother.blogspot.com.au/2017/03/rheumatoid-arthritis-when-youre-flaring.html">this post</a> for some of my hacks and strategies. Money has been exceedingly tight for some little while now, so I've been pushed right to the extreme edge of inventiveness and ingenuity to manage low effort meals that are sufficient to feed Dragon Dad who's working very long, tough hours and really needs good solid meals that are enjoyable as well as sustaining. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Say no. A big flare is when you cancel, or say no to requests from people to do stuff. You DO need to rest and look after yourself. It's the time to ask for help too - if there's something you do have to do that can't be rescheduled, call someone and ask if they can drive you - if you're taking a lot of extra analgesia, that may be essential. If you've got someone in town briefly and you'll miss them if you don't make the effort to meet up, see if they can come to you - remember, they're not visiting your house to inspect your housekeeping, they're coming to spend time with you. If people offer to help, say yes, and give them specific things to do that will help you manage your day - ie, bringing food, transport, minding kids, etc. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Leave the housework - from years of experience, and living with kids, I know that if I don't get to household chores one day, they will wait patiently until the next day, and the next and the one after that! The fly in the ointment for me with that one, is that if it's something that really gets up Dragon Dad's nose, he'll quite likely do it - he can't handle the dishes sitting around, for instance...but won't stack the dishwasher, so he ends up washing them by hand! </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Lastly, DO NOT feel guilty. You didn't make the flare happen. You didn't, for that matter, cause your disease. You can't help flares - they happen, it's part and parcel of RA. So you have nothing to feel guilty about. And anyone who tries to make you feel guilty is not someone you need to have around you - during a flare, or just in general. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">The bottom line is to look after yourself - during a flare, you need to coddle yourself, because you'll be feeling like crap. Just go gently, binge read, catch up on TV you've missed, watch a movie, drink a lovely glass of wine with your dinner (it'll help stimulate your appetite!), and wait it out. I'm on day four, and the flare is easing. Still more pain than usual, and I have absolutely no stamina, but it's better than it was on Sunday and Monday, by a long way.</span><br />
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Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com0tag:blogger.com,1999:blog-679982583847135662.post-36926770302994141862017-09-28T16:18:00.000-07:002017-09-28T16:45:26.521-07:00RABlog Week 2017, Post 4: Hobbies - how they may help living with RA<div class="separator" style="clear: both; text-align: center;">
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<i><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><a href="http://radiabetes.com/blog_week17/day4.html" rel="noopener" target="_blank"><span style="color: blue;">Hobbies </span></a>–
Hobbies are healthy or maybe they are not? What is your hobby and how
does it help you with your autoimmune conditions? If you do not have a
hobby imagine a great hobby for a person dealing with RA.</span></i></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Hobbies are one of those things that get bandied around </span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">within the chronic illness communities as a - by and large - good thing. In theory, they give you something positive to focus on to distract you from your disease and the difficulties faced day to day. It's something I struggle with, as a concept, because I'm not a big 'hobbies' person, perhaps because, many of the things people do as hobbies are things I do, or have done, professionally. So for me, they're not hobbies. They are, though, things that give my life meaning. </span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I'm a writer. Apart from this blog, I write professionally for a ghost writing company. I've written articles for mainstream craft, art and design journals, locally and internationally. I have chapters in a book that was published about the Freemasons in Australia. There are education kits in a major Australian performing company and a Sydney museum that I researched and wrote. I started my blogs (I also have a hugely neglected book blog, which was my first of the two) so I'd have a place to write that didn't impose a brief. But I don't really regard blogging as a hobby - it's part of a larger writing practice. It's just the place where I get to write what I want.<br /><br />I'm an artist. I draw, paint, create mixed media works, and I work in clay. I'm tinkering with photography too. I've exhibited and sold all over the country. I've taught - art, and art history and theory. At the moment, due to lack of funds and studio space, I can draw, but that's about it. I'm struggling to find the right headspace though - I have ideas that could get me going again producing steady work, but I also need to find outlets. It's energy to make the list and go scouting that's holding me up there. Again, it's not something I do for the fun of it. It's professional work and I aim to be selling it. Very long term, my ideal situation would be to have a home based studio that's set up for a mixed practice, with a kiln for ceramic work, where I could maintain my own practice, and also run small classes for adults. That's going to require some very different financial circumstances to where we are at present though. </span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I'm a musician. I'm a classically trained singer and was part of a major opera company chorus for fifteen years. As well as chorus, I had some small bit parts and understudies. I've also fronted big bands and concert bands as a soloist. I was a member of Australia's only professional Jewish choir in Sydney. Right now, I'm up to my eyes with my synagogue's community choir being part of the High Holy Days services. Yom Kippur starts at sundown tonight and goes through all of tomorrow. I've been a singing teacher in my time too - in schools and privately. </span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Even food, for me, has a professional base, so while I do enjoy cooking, it's something I've done professionally, and that's always there in the background. That professional experience isn't something that goes away after you finish working in an industry.</span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">So, I'm a creative, a professional creative, with skills and experience across a few different fields. It makes crafting a hobby out of these activities impossible, because my head is in a professional space when I do them, and that brings its own pressure. It's something I find other creatives who've worked professionally in their fields understand. Those who enjoy many of the activities I do as hobbies, don't... For them, it's an escape. The activities are something that's different from the rest of their lives, and it gives them that place to do something for themselves that IS separate, and just for them, and fun - it's play. None of these things have been 'play' for me for a very long time. I'm not unhappy about that, but herein lies my difficulty with the concept of hobbies.... </span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I DO have an escape. I'm a reader - a voracious reader. My kids used to tell people I ate books. Even the Stepson started giving me his school books of an afternoon saying I could have it to read because he knew I'd have it back to him in the morning, finished, to take to school again... To that end I have an enormous home library - many thousands of books. There are two major fiction collections - adult and children's. They cross many genres. And I read them all. That's a criteria for them to remain on my shelves. If I don't re-read it in a year, then it goes. Books take me places. On a bad day, I can tuck myself up on the couch with a blanket, the cats and tea, and get transported to wherever the current book is set and become part of someone else's life and adventures for a while. Oddly though, reading is still not something I see as a hobby. For me, reading is like breathing. I can't not read. I ALWAYS have a book with me, and usually have a couple on the go at the same time. </span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">My range of activities is broad enough that there's usually something I can find to do to pass time, and connect me with other people, regardless of how crap I'm feeling. At worst, I hibernate with a book and populate my immediate world with the characters from the books I'm reading - they have the benefit of not requiring me to find the energy to be polite or look after them! </span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">So, having established that while I have any number of ways I spend my time, but that I don't regard them as hobbies, the thing I WOULD say is that human beings are creative creatures, inherently. So, if you don't have something creative that you do that's apart from your normal day to day activities, and something that offers you time out and an opportunity to meet new people, then get out and find something. The online world has opened up numerous opportunities for group activities that you can do from home too, so not being able to get out physically needn't be a block to that either. The photo challenge I do on Facebook has introduced me to many new people, and has lead to my photography improving out of sight - and that's with me only having a phone camera for digital photography. I've even met people face to face in the group for planned photography meet ups. So, there ARE things...and they do make a difference when you can get to the end of the day and look at something you've done, someone you've spent time with or spoken with that's, for a little while, taken you out of the day to day thing of being ill. <br /><i></i></span></div>
Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com4tag:blogger.com,1999:blog-679982583847135662.post-71591273247002496842017-09-27T23:25:00.000-07:002017-09-27T23:25:57.565-07:00RABlog Week 2017, Post 3: RA and partners <div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><a href="http://radiabetes.com/blog_week17/day3.html" rel="noopener" target="_blank"><span style="color: blue;">Partners </span></a>–
<i>Where would we be without our partners? They are often not just
partners but caregivers. Tell your partners story. And if you do not
have a partner what will your ideal partner be like, or do you even want
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Well, that's a big question... It raises a gazillion possible issues in itself, and for me is a complex topic. I'm also still running a day behind the prompts, so this may not be the most considered post on the topic that I might write. </span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I was diagnosed with RA in 1992. That's twenty five years ago. A bloody long time... And a number of partners over the course of that time (and that's another story...suffice to say, it's taken me most of my adult life to figure out relationships and to NOT keep getting involved with replicas of my father...). At the time of my diagnosis, I was still with No.2's father. The RA appears to have been triggered into full activity by my pregnancy, as there'd been no overt indicators before No.2 was born. However, with the clarity of hindsight, I can pull together odd things that, gathered together, are clear indicators that there was something much bigger going on. </span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">At the time, life was very busy. (For my diagnosis story, read <a href="http://theoriginaldragonmother.blogspot.com.au/2014/05/parenting-when-you-have-chronic-illness.html">HERE</a>) I was back at work after six months of maternity leave. I worked in a day care centre, so I could take No.2 to work with me. I was still breastfeeding - almost entirely - he was completely uninterested in solid food. I also had a contract with the opera company that was particularly busy - a contemporary opera for the Adelaide Festival. No.2's father was working full time, but sort of on call shift work, given the nature of his job, so his hours were all over the place. He was also conducting two concert bands out of hours, so was not home a lot. We had a huge mortgage, and money was tight so altogether it was pretty stressful. Me getting sick was the straw that broke the camel's back. My then husband didn't deal with it at all well. Ostensibly, he was supportive, and said all the right things, especially when there were other people around. But for me, the emotional support was just not there. I was deeply frightened, and had to deal with the additional trauma of weaning No.2 - something neither of us was ready for - so that I could start taking medications to deal with the pain of the arthritis while tests continued to establish a precise diagnosis. I felt very alone. No.2's father didn't 'do' illness. He's a man who largely lives on the surface of life. Emotional issues are something he avoids. Ultimately, it was a large factor in our marriage breaking down, which finally happened when No.2 was around 4. </span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">What followed the breakdown of my marriage was a long period of single life. The other adult who was the most present figure in my life was my mother. She was amazing. She stepped in and became the 'other parent', given that my ex, by then, was also studying part time and was very unavailable. She was the one who pitched in if I was flaring and needed another set of hands. </span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">It wasn't until No.2 was 9 that I met someone. Another mistake, and a colossal one at that. I'm not going to retell that story in detail, it's not pertinent to the discussion, other than to make the point that the fact that I was sick was part of what drew him to me. He needed to have someone to look after. But almost nine years of chronic illness - thankfully comparatively mild, but very much a factor in managing my life from day to day - had made me very independent, and very capable of finding my way around the things that were difficult. He NEEDED me to be sick. I certainly didn't need someone to need me to be sick!! Ultimately, it became a highly toxic and dangerous relationship from which the kids and I were forced to flee and go off the grid. In hindsight - again - we were extremely lucky to have the support of some very fine women, both emotionally and practically. </span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I had a brief relationship many years later - 2004-06 - that was the last of my 'father figure' men. He also lacked the ability to cope with a sick partner. My RA WAS a factor. It played out differently with him but it was a definite issue. </span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">By the time I met Dragon Dad I wasn't looking any more. It just happened. And he's NOTHING like my father! The RA, while progressing, was still moving slowly and was largely manageable. The first experience he had of how it could impact me was a six month period early in our relationship when I caught a cold - which exploded into a massive chest infection very quickly. That was followed by a string of UTIs, reactions to medications, another chest infection - it was a bad six months. Throughout, although struggling with demons of his own around relationships, Dragon Dad was solicitous and caring - and his practical care was superb. Shopping and cooking done for me - at his place or brought to mine, prescriptions collected, etc. The flares came and went - he struggled to understand the ramifications of the disease, but asked questions constantly, and was supportive when I tried to do things like build fitness and find means to train without tripping flares. To this day, he's the only person who's trained me and NOT triggered a flare - and that's counting the many professional personal trainers at gyms where I've had memberships over the years who just didn't LISTEN...<br /><br />We were living together by the time the wheels fell off in 2013 and the RA exploded overnight - it felt like overnight anyway, the change was so sudden and so severe. I was terrified - I had no idea why my body had suddenly gone rogue - there was no particular trigger. I was, in fact, the fittest and healthiest I'd been in some time, exercising regularly, losing the weight that had gone on after a bad accident to my right knee had had me on crutches for six months. </span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Months and months of tests, medications, disastrous reactions to some of those meds, and then a hospital stay ensued - it was all pretty nasty. You can read the details of that <a href="https://theoriginaldragonmother.blogspot.com.au/2016/09/rablog-week-2016-post-no1_24.html">HERE</a>. Since then, it's been an ongoing struggle to find the magic mix of medications that will keep me stable, slow the deterioration, and allow me to live as normal a life as I can. As those of you with RA know, that's NOT a straightforward path. There have been many ups and downs. There have been some really bad times when I've had extensive flares, I've struggled emotionally, I've been really scared, and I've not known what to do next. </span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Dragon Dad has been there. He's been scared too. He watched my five week black out while I was on Methotrexate - deeply frightened. He's been frustrated - he's a man who fixes stuff. If something's not right, he fixes it. He's a good fixer. He can't fix this. And he finds that extremely difficult to cope with at times. It's OK while I'm doing well. When I'm not, it really bothers him that he can't DO anything. He compensates by spoiling me - he buys me good bottles of wine, Haigh's chocolate, brings home DVDs of movies I love, packs me into the car to go for drives so I don't stagnate in the house, rubs my feet, runs baths for me, anything he can to make it easier for me. He's taken over the heavy housework - as he said yesterday when I told him about the posts I'd written, if I leave something long enough - like the dishes (<a href="https://www.facebook.com/theoriginaldragonmother/photos/a.725911270860584.1073741828.718624548255923/1452861364832234/?type=3&theater">see my PaD photo from Monday 25th September</a>), because I'm not functioning well enough to do anything bar the most basic things, he just does them. </span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">He's NOT perfect. He doesn't get it right all the time. He does have a tendency to make decisions for me, on the basis of what he thinks I may or may not be able to manage. That's an ongoing conversation between the two of us that I find I have to revisit periodically to remind him not to do that. It drives me absolutely bonkers. The irony is, he HATES people making decisions on his behalf, so he really should know better. But in his manifestation of the alpha male, and the fixer, he does it for me, for the Stepson, for anyone he has some sort of care position with... It's a major pitfall for those who care for those of us with chronic illness and disability and it takes a delicate balancing act for those who do the caring to NOT fall into the habit of making those decisions for us. He may well be accurate in his assessments, but that is NOT the point. When he does it, he disenfranchises me and my ability to make those choices for myself. </span></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">At the end of the day though, like so many do and as some have done in my life, he could have bailed. But he didn't. And I'll always respect that and be deeply grateful. It has changed and affected our relationship, me being as sick as I am now. I know that, and it makes me sad. But the love and respect we have for each other is profound, and THAT is the basis we build on to continue in it and continue as partners in this mad thing called life. </span></div>
Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com0tag:blogger.com,1999:blog-679982583847135662.post-59699925250452280372017-09-26T23:39:00.000-07:002017-09-26T23:41:30.350-07:00RABlog Week 2017 Post 2: Living with RA - Tips and Tricks<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><a href="http://radiabetes.com/blog_week17/day2.html" rel="noopener" target="_blank"><span style="color: blue;">Tips and tricks</span></a> – <i>What are the ways you have learned to work around the physical difficulties and limitations of your autoimmune condition.</i></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I liked the idea of this prompt from the outset, but I've not got a nice organised list to download into a post...I'm just not that organised!! So, bear with me while I ramble through how I manage day to day.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">The biggest thing, which has made the biggest difference overall, has been to learn to LET GO. I'm something of a perfectionist, and a massive multi-tasker. Back in the day, during one of the busiest times in my life (VERY early years of RA when it was very milk) I was at art school in the final years of my degree, sole parenting two children who were at two different schools, had a one day a week job in a garden centre with my mother, and had the opera chorus contracts as well. It could get VERY hectic when they all started colliding...which did happen. But I got through all of them. Finished assignments, learned my music and did the shows, got to work on time, got the kids to and fro where required, and kept up with the house - well, sort of, re the latter. My house couldn't have been photographed for a magazine spread at ANY time during that period, but that wasn't on the calendar so it didn't matter. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">It's been VERY hard to come to grips with the fact that I just can't load myself up like that any more. But I can't, and I don't any more. ONE thing at a time, and on the bad days when I can't even manage that, let it go... </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Related to that is learning to say NO. To people who ask for help, or extend invitations, or have expectations... Most of the time, it's going to be OK, and it's nice to be invited out, and it feels good to help people out, etc... BUT, not at my own expense. I was someone who said YES without thinking most of the time. But these days, I take a moment if I'm asked to do something - no matter what it is. I might need more than a moment, in which case I let the person know I'll get back to them to allow myself space to work out if it is something I can manage or not. I don't make up stories either if I end up realising I have to say no. I tell it as it is - I tell people if I'm not well enough to go somewhere, or do something for them. They may or may not take that on board, but that's not MY issue - it's theirs. MY issue is being able to manage what I need to do on any given day, and saying yes and adding a load I can't manage can mess me up for my day, and more days beyond that sometimes. So, learn to say no and look after yourself. And that, by the way, includes saying no to your children (if you still have children at home) if need be.... Obviously, not for something that HAS to happen, but they also need to learn that you can't be going non-stop without it being potentially harmful. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Managing at home - well, there are things I just can't do domestically any more - not if I want to be able to do anything else that day. I CAN'T vacuum the house and expect to have my hands functional by the end of the job. So, Dragon Dad, bless his cotton socks, vacuums and mops. I use the dishwasher - my hands aren't safe in a sink. I have a gazillion cooking hacks - I wrote a post about those a while back - you can read it <a href="http://theoriginaldragonmother.blogspot.com.au/2017/03/rheumatoid-arthritis-when-youre-flaring.html">HERE</a> and take whatever is useful for you and tailor it to the way you eat. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Overall though - PLAN. Work out what you need to do, what you can do, and make a plan around those factors on each and every day. Be prepared to delegate. Days I know I'm not going to make it to the end of the day and be able to produce dinner, I let Dragon Dad know as early as possible in the day so he can bring something home on his way back at the end of the day. If there's an appointment I need to get to and I know I'm going to struggle to do the drive, I find someone to take me. If there isn't anyone, I move the appointment. If I can't get all the shopping done on one day, I break the list up and do it in smaller batches over a few days. If there's a busy time ahead - I mentioned the Jewish High Holy Days in my previous post (we're in between Rosh Hashanah and Yom Kippur at present and I'm singing in the choir and there are piles of rehearsals) - plan ahead. Move anything that's not essential so that in between the things that must happen, there's down time so you can rest... I'm doing bugger all apart from rehearsals and services at the moment, and that's how it'll be until after this weekend coming is over. It's why these posts have been going up late - because I HAD to rest. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Accept that perhaps you won't do things to the extent that you once might have. A big one with that for me right now is this blog event. For the last two years, I've been very prepared and have written very considered and detailed posts. This year, that's not happening. I've been up to my eyes with the High Holy Days prep. I'm exhausted. I'm flaring. I had my infusion yesterday because with diabolical bad timing that came right between Rosh Hashanah and Yom Kippur. So I had a choice - write much less considered posts off the top of my head and still be part of the event, or bail altogether. I told myself that in the greater scheme of things, it would be OK if I bailed. Which it would have been. BUT, I wanted to do it. I've really enjoyed it in past years, so I didn't want to miss being part of it this year. So I decided to just get moving and write SOMETHING. Are they the posts I'd have written had I had different circumstances that gave me more time and energy? No, they're not. But it's a great illustration for this particular prompt - because I'm having to let go of that notion and just embrace the fact that if I'm going to participate - THIS is how the posts will be. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">And on that note, I'm wrapping up this post, because I have a rehearsal tonight so dinner has to be early so I can eat before I go and it's 4.30 and I need to make a coleslaw to go with the chicken we're having. <i></i></span>Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com2tag:blogger.com,1999:blog-679982583847135662.post-55071860749579693932017-09-26T23:04:00.000-07:002017-09-26T23:04:04.340-07:00RABlogWeek 2017 Post 1: Mental Health and RA. <div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">It never ceases to amaze me how much faster the years roll past as we get older...and that it's late September and #RABlogWeek is back again... So, first post of five this week - we'll see how I go with keeping up. For those readers unfamiliar with this event, RABlogWeek is an initiative set up by my friend Rick, who blogs at <a href="http://www.radiabetes.com/#sthash.IZhsng9y.dpbs">RA Diabetes</a>. It's an international event involving people with RA blogging each day, responding to set topics. It's fascinating reading all the different responses to the posts, and something I've found to be a good focusing activity, as - oddly enough - it usually hits in a point in the year when I've lost my blogging mojo...weird that. </span></div>
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<i><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="color: #3366ff;"><a href="http://radiabetes.com/blog_week17/day1.html" rel="noopener" target="_blank"><span style="color: blue;">Mental Health</span></a></span>
– How do you manage to maintain your mental health while dealing with
autoimmune disease? Discuss how dealing with RA every day makes you
emotional. Do you hide your emotions?</span></i></div>
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I had to laugh to myself when I saw the first topic for this blog event. Regular readers here will have read a number of posts I've written this year pertaining to mental health issues - mine - that have arisen largely due to having RA and dealing with it now being severe<i>. </i>For those new to the blog, or who perhaps haven't seen those posts, you can read them <a href="http://theoriginaldragonmother.blogspot.com.au/2017/03/rheumatoid-arthritis-and-managing.html">HERE</a>, <a href="http://theoriginaldragonmother.blogspot.com.au/2017/04/ra-life-things-that-are-keeping-me-sane.html">HERE</a> and <a href="https://theoriginaldragonmother.blogspot.com.au/2017/08/rheumatoid-arthritis-when-penny-drops.html?showComment=1506150155667">HERE</a>. </span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">If you read them in the order I've done the links, this post will possibly make more sense, because managing one's mental health alongside a chronic illness is definitely a journey. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">So, how do I manage day to day...well, that can be something of a moveable feast. I don't have an overarching plan, currently, and I'm not seeing a therapist of any sort right now. So, I'm self managing. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I'm a reasonably positive person, inherently, which is useful in the sense that being depressed - as I currently am - (backstories linked above) is a deeply uncomfortable thing - and I mean REALLY uncomfortable. And that's on top of all the feelings involved with depression. So I'm fighting the demons, wanting to retreat and hibernate, generally avoiding people, etc, but at the same time, my inherent nature is up in arms against all that. Overall, that's a good an useful thing, but it does make for feeling very uncomfortable in my skin, at the same time as providing me with the impetus to DO something about it rather than stay stuck for too long, as might be the case if I tended more to negativity and depression... </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I MAKE myself get out most days. I aim for everyday but don't beat myself up if I can't make it - although, a few days running of staying at home is now a red flag. I take myself out to have coffee in the mornings nearly every day - it's a small expense, but it's a means of ensuring I DO go, and it means I need to speak to people, if only to make the order for the coffee. Sometimes, like today, I arrange to meet up with someone - but I do tailor who that is depending on how I am. I'm post infusion today, with a monster headache and I'm feeling pretty crappy, so the person I saw is someone else who has a chronic illness and gets it, so it's OK to be crap. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I have ongoing projects. I do a daily photo challenge - you can read about it and see some of the photos <a href="http://theoriginaldragonmother.blogspot.com.au/2016/12/new-year-and-not-making-resolutions.html">HERE</a> (if you checked out the other links, I talk about it in some of them too). This year, it's been a lifesaver. there's a prompt every day for a photo that has to be taken and then posted on Instagram or the group's Facebook page. It's a commitment I have to keep. Some days, the really bad ones, it's the ONLY reason I've got up. And then I sit on FB and watch the other photos popping up and chat to people via the comment threads. It's got NOTHING to do with RA or any other chronic illness, and that's a good thing. It's creative, it gets me out of myself. If you want to see my photos, hop on over to the <a href="https://www.facebook.com/theoriginaldragonmother/">Dragon Mother Facebook page</a> - I post them there too. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I committed to the community choir at the synagogue for the High Holy Days - which we're in the middle of now (which is part of the reason I'm so late with this post...it's been very busy). I'm a trained classical singer. In Sydney, I was a member of the only professional Jewish choir in the country. So, singing in a community choir is very different, and I have to bite my tongue sometimes, because the environment is completely different. BUT, it involves me in my community in a useful way. It gets me singing again - and singing releases endorphins - and we all know how good they feel! Also, it's helped me meet people in the community with whom I have things in common, so it's the beginning of new friendships. An added bonus is that someone I knew in Sydney is also now in Melbourne and singing in the choir too, so rekindling an old friendship has been lovely. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Exercise. I can't rant on enough about how important it is to keep moving. Mind you, I'm bang in the middle of a fortnight that's made it impossible for me to get to my Tai Chi classes - rehearsal schedule clashes, the infusion, AND just feeling SO crap with a flare...something had to give and that was it. But starting Tai Chi this year has been fabulous. Getting out - again - meeting new people - there's a pattern here... - and doing something that's physically challenging BUT possible, and that's helping me overall with strength and mobility. And, again, after a class, those lovely endorphins...!! </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Ultimately, while I don't have a plan, per se, for managing depression, there are things I've put in place to help me manage around it, and stop myself from getting sucked too far down into the black hole. I'm not one to splatter myself all over the place, so by and large, people haven't really been aware of the emotional struggle that's been going on. I didn't even really write about how big it was until fairly recently (it's the third of those links to past posts up early in this post), and I've not talked to Dragon Dad about it in any detail, because right now HE'S suffering from depression and extreme stress, so he's not in a position to be able to cope with mine. That will pass. And then I'll talk with him. But for now, part of me looking after myself is ensuring I don't push HIM over the edge... </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">It's different for everyone. But at some time in a chronic illness journey, depression IS going to be part of the picture, and it may be something that recurs at different times. Knowing yourself well enough to know how best to tackle the situation is vital, and if need be, seeking appropriate help is really important. I'm not currently seeing a therapist - and there are a few reasons for that, but I do have someone I can access if I feel as if the things I'm currently doing are inadequate. </span></div>
Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com4tag:blogger.com,1999:blog-679982583847135662.post-33342097864055974922017-08-21T23:14:00.002-07:002017-08-21T23:14:45.260-07:00Rheumatoid Arthritis - New Pain Management Plan. <span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Many thanks to everyone who's read my last post and left comments. As those of you with chronic illness know, this can be a weirdly isolated life, when the disease is severe and interferes with our ability to hold down a regular job, and be out and about the way most healthy people are. So the social contact that comes via the Internet can make a very big difference. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I mentioned in that post that my pain levels had reached unmanageable levels. Slow release Tramadol was the basis of my pain management - with Endone (an immediate release opioid) as required for breakthrough pain. The maximum dose for the Tramadol within a 24 hour period is 400mg. I had reached a point where I was taking 150mg in the mornings, and 200mg for the evening dose, so I was pushing that. And it wasn't cutting it. Particularly as I neared the end of the four week infusion cycle. Plus, I was SO fogged up with all the Tramadol that I wasn't functioning well, cognitively. As well as discussing a possible change of biologic drugs with my rheumatologist, we did talk about pain management, but he doesn't prescribe my pain meds - so it meant an appointment with my GP. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">One of the things about the interstate move a year ago was facing the thought of finding a new medical team - and breaking them in. I'm not a passive patient. I'm compliant, once a plan has been nutted out that I'm comfortable with, but I don't just sit and let the doctors work it all out without taking my feelings and contributions into account. I had a brilliant team, between my GP, rheumatologist and physiotherapist, in Sydney. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Thankfully, my Sydney rheumatologist had someone in mind for me, an old colleague and personal friend. He knew I needed another specialist who would work collaboratively with me and, most importantly listen to me and REALLY hear me...because in the past, that's been an issue. It nearly always is a big issue when you don't present medically within obvious and traditionally recognised parameters. I am sero-negative - ie, I don't have, have never had, a positive rheumatoid factor in my blood. Around 20-30% of people with rheumatoid arthritis are seo-negative. SOme of the more traditionally recognised features of RA don't tend to be as overt with sero-neg RA - such as swelling. I DO swell, but I rarely have the big balloon-like swelling that the doctors expect to see, so unless you know my body well, it's unlikely you'll notice the times I am swelling. My Sydney rheumatologist learned what to look for. My new guy here is learning too - very fast. He's taken good time during consults to check me out very thoroughly, and I'd say, apart from the letter that I had with the referral, my Sydney guy had called him and had had a chat at some point before we met. <br /><br />The GP was the next person to find. My Sydney GP didn't have anyone she could refer me to here, so I had to play a bit of roulette - that's certainly what it felt like. My new GP is proving to have been a very good discovery. So, I headed in last week to discuss the pain management issue. We went over where I was at with pain meds and NSAIDs. He's stressed the importance of keeping the dose of the latter up - so, that's 100mg morning and night of Celebrex, and Losec in the mornings to help protect my stomach, as they can cause gastric ulcers. Next was the analgesia. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Tramadol is an opioid like drug. It's scheduled, so to get a prescription for more than twenty tablets at a time, AND repeats, requires a phone call to the PBS - Prescription Benefits Scheme - to get permission to make the bigger prescription - which saves on doctor's visits, as it's a drug you almost always have to get prescriptions of by actually seeing your doctor, which means another charge for the visit, and so on... Typically, I've been maintaining prescriptions for the 100mg and 50mg tablets, with authority scrips for three boxes at a time with five repeats. <br /> </span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">We batted a number of different alternative options around. The one point of agreement was that I was going to have to have an opioid as the base medication. While there has been huge noise in the media about opioid abuse and there are plans here, I believe, to start restricting the prescribing of them, as is already the case in the USA, thankfully, my GP is a chronic illness specialist GP. He understands chronic pain, and the difference between chronic pain that is chronic illness based and that which results from an injury. He has no issue with them being used - appropriately - to manage chronic pain that's the result of a disease like RA. For me, at this point, it was a question of the mode of delivery. Ultimately, after some discussion, I've ended up with a transdermal patch that I replace every three days. Each patch delivers 12mg of Fentanyl per hour over 72 hours. With that, he prescribed 50mg of Tramadol in the mornings and 100mg at night. And Endone for breakthrough if I flare. <br /><br />It's been a week since that appointment. I am feeling noticeably better. The pain IS more doable. Overall, the 'normal' pain is less. I'm more aware of the degree of stiffness I'm experiencing - that's particularly noticeable in my hands - typing this post is taking me about twice as long as it should due to all the typos I need to correct when fingers land on the wrong keys! If I sit in one position for too long, I have real difficulties getting up again. I'm excruciatingly stiff in the mornings - all this stiffness was being masked by the amount of pain I was in and being lumped in with it... That Tai Chi I'm doing is going to HAVE to become a regular morning thing - once I'm mobile enough in the mornings to warm up and work my way through the Beijing 12. It will, I hope, then set me up for the rest of the day. I'm much less fogged, and have found I have a bit more energy - that was being sapped by the amount of pain I was in previously. My head is clearer for not being fogged up by the large amount of Tramadol I was on. <br /><br />Time will tell, of course. I'm now starting week four of the infusion cycle, with my next one due on Tuesday next week - this is the week when I can anticipate some deterioration. So it'll be interesting to see how that plays out now. Hopefully, it will be a bit better than it has been. I'm sleeping better too, in between waking due to pressure pain in my hips and shoulders that wake me and require some major re-positioning before I can drop off again. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I'll be back at the GP next week to review this first fortnight with the patches, and get the next prescription if he decides the improvement has been good enough to settle with this as the plan... So, I'll report back then, if not before! </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Poppies, in honour of my new analgesia - photo by me. </span></div>
Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com2tag:blogger.com,1999:blog-679982583847135662.post-56917789939028440802017-08-14T23:58:00.000-07:002017-08-14T23:58:50.472-07:00Rheumatoid Arthritis - when the penny drops that it's forever<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I've been MIA for a while now, I know, and for regular readers, my apologies. It's been a tough six months or so. I've had increasing pain, therefore increasing analgesia accompanied by increasing brain fog. The Orencia infusions have been giving me a couple of good-ish weeks out of the four from infusion to infusion, and I'm well aware that that's not good enough, but it's also been a busy and pressured time with a number of other things going on. <br /><br />The emotional impact has knocked me for a six. Those of you who follow The Original Dragon Mother on Facebook - link <a href="https://www.facebook.com/theoriginaldragonmother/">HERE</a> - will have been watching daily photos going up from Fat Mum Slim's Photo a Day challenge, as I chose to drop them on that page as well as within the FB page for the group. And not much else. Certainly not blog posts from me. As I've written previously, I started that photo challenge in January this year, partly to try and kick start my art practice again - in my mind, I had optimistic visions taking a photo each day to post and doing a drawing each day too. That hasn't happened. The photos, yes - the drawings, no. I've been writing for work as the assignments come in, but nothing else, really. Deadlines for competitions have come and gone, and ideas to pitch have sat in the slush pile with nothing happening to them. Eventually, I stopped and looked at all of that, and recognised all the signs of depression, and then had to come to grips with what was going on. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Rheumatoid arthritis, like all autoimmune diseases, is chronic, incurable, degenerative and painful. For twenty years after my initial diagnosis, I got off extremely lightly. Flares aside - they were nasty and debilitating - it was mild, and manageable. When the wheels fell off in 2013, it all happened very fast. Before I knew what had hit me, I was in hospital barely able to walk, hot on the heels of having pretty much lost July of that year to Methotrexate and the brain fog that was more like a complete brain wipe out, because I really don't have memories of that month at all. There were so many doctors, so many tests, so many drugs, and then more drugs, and reactions and allergies, then different drugs, constant testing and monitoring. It's a really BUSY thing, having a chronic illness. Meantime, there were other pressures - stuff with Dragon Dad's business, family stuff, our interstate move, the inevitable isolation that happens at the beginning of establishing yourself in a new place, new doctors, etc, etc... BUSY. Then things started to settle. Routines got established. I acquired friends on the ground that I could meet up with and hang with. Dragon Dad put the business on hold and got a job in real estate - something he's always wanted to do - and started being gone a lot. <br /><br />And I was a bit of a mess, to be brutally honest. Even he doesn't know how bad its been - that would be an added pressure he just doesn't need. The Photo a Day challenge became, quite often, the thing that got me out of bed. Sitting on FB chatting to people in the group via comment threads on photos became my main socialisation. That, the cafe down the road, and meetups with a few people I see regularly. Until I realised I had to come to grips with it all or I was going to get myself stuck in that safe little rut - and that's not a healthy option. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">The crux of it, in simple terms, is that I'm NEVER GOING TO GET BETTER. Looking at those words is awful. Living it is worse. How I am right now is, possibly, the best I'll ever be looking ahead in time. I don't know. I'm looking at a change in biologics by the end of the year, if not sooner. I've just rejigged my pain management drugs and am getting acquainted with my first opioid as the base medication, in the form of a patch on my arm. A new bio may work better and change everything. It may not. What it won't do - what it can't do - is make it go away. Nothing can do that until the scientists who are doing the research figure out a way to cure the disease. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">There ARE worse things. I do know that. And there are people I know - good friends - who also have autoimmune diseases, some of them have multiple diseases, who are far sicker. Are in more pain. Have much bleaker outlooks. And I feel for them, and try to support them as much as it's possible for someone who's geographically distant in some cases, but at best, just a pair of ears. Here's the thing though - there is a lot of 'competition' about degrees of illness and disability in the online world of chronic illness. It generates, at times, some very bad behaviour online. That disgusts me. We all have enough to deal with on a daily basis without that crap. This isn't about me trying to make a case for how sick I am. This is me trying to come to grips with, and explain, what the sense of confronting a long term, incurable disease is like. Because no matter how severe or mild it may be - and I've now had the dubious privilege of experiencing a wide rage of those - it's ALWAYS going to be there. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">That's what's had me hit the wall over these last few months. Having the absolute reality of that really sink in. I am ill. Ill enough to require specialist care for the rest of my life, powerful scheduled drugs to control the disease, and to have to take each day as it comes, knowing that some days I simply won't be able to manage the things I had planned and will have to cancel. I will always be ill. It's hard. It's confronting. It's pretty damned scary. I'm in pain. I can't remember the last time I slept through the night so I'm always tired. My patience - never my most outstanding personal characteristic - is in very short supply. I just don't have the energy to be patient with so much of what life can throw up. Nor do I even have the energy to lose my temper when things really jam themselves up my nose. That pisses me off - that catharsis of having a really good big temper tantrum (regardless of the grovelling afterwards that might be necessary) is lost to me because I just can't afford to waste emotional and physical energy like that. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I don't know if I've made a lot of sense in this post. I'm still not really OK. I'm still really struggling with this. I still haven't talked to Dragon Dad about it because he's SO preoccupied with the pressures of his new job and the targets he needs to meet that his ability to sit through me fumbling around trying to make myself clear is just not there right now. It's also something that will worry him and add to his stress, which is already considerable. So I'm telling anyone who reads this instead! Because I have to say it all in some way before I implode, because until I own it, I can't work my way through it. So here it is, in all its messy glory... Watch this space. Now I've opened the dam gates, there will probably be more to come! <br /> </span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">To wrap up, here's one of my recent photos - because it's far nicer than a photo of my arm with a cannula in it, or a photo of my current meds, or anything else RA related... It's a sunrise taken from our back yard one morning a few weeks ago - straight off the phone camera too - no editing. It really was that intense and beautiful! </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSk6W8dzSu1SQ8nW1rFWHm5pzfMF9zlZI2ZBd3b_NuUj6H8BANsCk5340VvL3pGv_ED7b40PZXJyHW8AycC6A-UhPyPk7eMC6LrbiTZ-SLXdo-EaqjbKYX7xZ4OYWRmYU3u-VZ08kXKrpc/s1600/FMS_13.8.17_StartsWithM_MorningSkySunrise.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSk6W8dzSu1SQ8nW1rFWHm5pzfMF9zlZI2ZBd3b_NuUj6H8BANsCk5340VvL3pGv_ED7b40PZXJyHW8AycC6A-UhPyPk7eMC6LrbiTZ-SLXdo-EaqjbKYX7xZ4OYWRmYU3u-VZ08kXKrpc/s320/FMS_13.8.17_StartsWithM_MorningSkySunrise.jpg" width="320" /></a></div>
Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com18tag:blogger.com,1999:blog-679982583847135662.post-48054528801601477292017-05-13T23:19:00.000-07:002017-05-13T23:19:02.483-07:00The rheumatology review...<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Well, that was a big, big day.... Note to self: in future, make rheumatologist appointments on a different day to infusion day. Part of me though, oh, it'll be OK, because it's all in the same building, so I don't need to run around, yada yada, yada... But I did have to hang around much longer than if I were just doing one or the other, and I was hanging around after the infusion...which meant the side effect headache was kicking in by the time I was finally heading home, and I was on the road at the time I'd usually have been falling asleep on the couch. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So I didn't make it to tai chi that night - and I really need to find the You Tube video of the Beijing 12 we're learning so I can review the first two parts and learn the third part which I missed... And do that over and over to fix it into my non-retentive head, before loading up with the fourth section this week! </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">However, it's been a reasonable aftermath to the infusion this cycle. The headache is largely gone. I still have an exceedingly stuffy head - who else gets really snotty sinuses as a biologic side effect?? But I'm back down to 100mg Tramadol morning and night - last cycle was the first time in months that I'd managed to achieve that, and thankfully, after a few days of it needing to be bumped up, I'm back down again. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">One of the things that happened with the rheumatologist this time round was X-Rays of my feet and ankles - which have been particularly vocal for some months now. Apart from anything else, the images give this new rheumatologist a base line to work from. I have two sets of MRI images of my hands, taken around a year apart, but they're from a few years back, and they're my last rheumatologist's baseline images. </span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPSLVq2dJV8OmfH4ipCNGUcXNuxyHMV-Jpa2icS3c-eAbIU6oFMbDWORmAUrnN5wSMF3SCD20b3KbRqAmDxOSP5Hwp7A3-pxhyphenhyphenRkmIz2T6n2GD80MJy6lSTL6hAxSM9-gfnxIPvzGEH6JH/s1600/Foot+X-Ray.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPSLVq2dJV8OmfH4ipCNGUcXNuxyHMV-Jpa2icS3c-eAbIU6oFMbDWORmAUrnN5wSMF3SCD20b3KbRqAmDxOSP5Hwp7A3-pxhyphenhyphenRkmIz2T6n2GD80MJy6lSTL6hAxSM9-gfnxIPvzGEH6JH/s320/Foot+X-Ray.JPG" width="320" /></a></span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">The good news is, there's NO damage in the joints of my feet and ankles. After a bit over three years of biologics - two and a bit on the current one - what that means is that, despite ongoing pain at varying levels, it's actually doing its job - i.e. slowing down the progression of the disease. Those MRI images were of my hands and wrists, and were part of what we needed to confirm diagnosis for the biologic applications, because my blood test results are often quite ambiguous. They showed erosions - holes - in bones in my hands and wrists, caused by inflammation. That happened over the years when the RA was - so I thought - so mild that I wasn't on any DMARDs (Disease Modifying Anti-Rheumatic Drugs). Clearly, although the pain levels weren't bad enough to send me to a doctor for anything more than anti-inflammatories and low level analgesia for flares, there was damage occurring. So, to have the levels of pain I'm having but to discover that my ankles and feet are still damage free is a win. We just need to get the pain management working better! </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">We're still tinkering with anti-inflammatories. After the last visit, I swapped from the one I was on to a different one. It offers a bit more flexibility for me as it's a fast acting drug, so if I vary the dose, the results of that variation are much more immediate. At the moment, I'm taking one in the mornings. Perhaps if I up that to add a second one in the evenings it'll be enough to get better relief. Upping the pain meds helps, but it also adds significantly to the level of brain fog - and that's definitely becoming more of an issue. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">The thing I forgot to mention at the visit - even with a list for the doctor, things get forgotten - is the pain in my right hip. Back in 2013, when the wheels fell off, I was getting a lot of hip pain - on the outsides of my legs. That ended up being tendinitis which, with heat and a lot of targeted physiotherapy, was cleared up. It took a long time, but it did improve a lot. This is pain in my groin - in the joint. So it means a quick trip to my GP and a chat about possibly X-Raying the hip, or some other kind of imaging, because the pain is fairly constant now, and is waking me up at night sometimes. HOW I managed forget to mention it to the rheumatologist is beyond me - note the 'note to self' above... But there's definitely something going that wasn't going on before, so I need to get it checked. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Apart from the hip though, the overall result of this latest review was pretty much to keep doing what I'm doing. Maintain the status quo... Which is good, overall - there's no actual BAD news there. But it's also frustrating.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Perhaps the worst thing about chronic illness is that, even when you're doing 'well', you're NOT well. I'm still sick. And I can't honestly remember the last time I felt well. And that gets very frustrating. While it's reassuring to find that the biologic is doing its job, along with the pile of other drugs I'm taking, the reality is that that doesn't mean I'm getting better. Because I won't. All that will happen is that I'll continue to get sicker...albeit that that process is being significantly slowed by the drugs. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">It's a very mixed experience which is very hard to articulate. I AM very grateful for the medications that are helping hold the beast at bay. I am grateful to have found a combination that I can tolerate and that are having a positive effect for me. But it's frustrating that they don't make me feel better. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Biologics are held to be the miracle of RA treatment that have changed the lives of countless RA patients. And they have. Treated early, RA is now a chronic disease that can be managed and if caught early enough, can have a much less severe impact on the lives of the people who have it. And that's the truth for many, many people. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">However, for those for whom the meds don't work, or those who - like me - got to the big guns meds too late, that's not the case. I can't work any more - not in a regular job for someone else. My body just isn't reliable enough for me to commit to being somewhere for regular hours every day. I need to build up the freelance work I do so it can earn me a better income - perhaps then I won't feel quite so flat about the whole work thing. There are many forms of exercise I can no longer do. There are activities I can no longer do - and they're not all big things like climbing Machu Pichu... Managing a set of tongs when frying something for dinner is becoming a HUGE issue. And I'm still on the lighter end of the severe scale. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I can still walk, albeit with pain. I can drive, ditto. I can shower and dress myself - there *may* be swearing sometimes...but I can do it. I have friends who can't do these things, or can't do them without help. So again, this isn't so much a complaint as a statement of circumstances, and something that is part of a complex picture for those of us with RA. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">There is an enormous spectrum of degrees of pain, disability, effectiveness - or lack of - of the drugs, and so on. And that's a big part of the picture that is so misunderstood by so many people, including doctors. </span>Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com4tag:blogger.com,1999:blog-679982583847135662.post-25894237384109030092017-04-26T22:18:00.001-07:002017-04-26T22:18:13.915-07:00RA life - the things that are keeping me sane.<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I wrote recently about <a href="http://theoriginaldragonmother.blogspot.com.au/2017/04/rheumatoid-arthritis-on-not-being-hermit.html">my general sense of being a bit stuck emotionally and mentally at the moment</a> and <a href="http://theoriginaldragonmother.blogspot.com.au/2017/03/rheumatoid-arthritis-and-managing.html">about managing depression and the potential fallout</a>, and have been reading a number of blog posts and articles by other people about slumps, losing mojo, <a href="http://bloghowtobe.blogspot.com.au/2017/04/treat-yourself-as-you-would-treat-others.html">self care</a>, etc... <a href="http://theseatedview.blogspot.com.au/2017/04/sickness-behaviour-many-causes-of.html">Lene Andersen wrote about her current fatigue levels</a>, and how that impacts on so many levels. Clearly, there's something in the water. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">In those posts of mine, I was looking particularly at a mix of personal, some illness related, and circumstantial elements that are impacting me at the moment. In thinking over it since - given that one of the reasons I wrote the post in the first place was to put it out there so I'd have to DO something about it - I've ticked a few things off my list (more on that in a minute), and have given myself an almost daily talking to to try and kickstart each day with a more positive outlook. I've also been looking closely at the things that ARE working for me, because sometimes it's all too easy to get caught up in the negatives, and that's a nasty trap. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">The talking to is having mixed results... One of the things that's getting to me is how stuck we are with the house since the move. Any new place needs that settling in time while you work out where to put things, and what you might need to add to make it work. We got some things done - Rumi proofed the back fence so the little monkey couldn't keep escaping; got Dragon Dad's desk set up in the spare room so he had a place to work; bought and put together some industrial shelving to help solve the storage issues in the kitchen (hardware store chic!) and bought and assembled a skinny cupboard to stick in the back hall for pantry storage. And then it ground to a halt, because money...or lack of. There are no built in wardrobes in this house. We had a pair of IKEA ones that work in the spare room and give Dragon Dad some clothes storage. And two chests of drawers in our room that double as bedside tables for our smalls and socks and so on. But I'm still, eight months in, living out of suitcases and boxes - and have a most impressive chair/floordrobe that would do any teenager proud! It's frustrating, and a bit depressing. So, on the list of things still to do is find the energy to go and do a major sort so I can pack away all the summer stuff into suitcases that can be neatly parked in a corner, and reduce the items that I am using so I can make neat folded piles of them. We also - and Dragon Dad actually said this... - need another bookcase because I've still not sorted and properly shelved the books because there isn't enough space - that's around $100, I think...might be doable soonish, I hope. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">In the meantime though, I have done two tai chi classes now, and am paid up and committed to continuing. My mother would laugh at me - all those years of her telling me I should do it, and me not doing it because she'd told me I should - perverse... I like it. I really do. I crash afterwards - fell asleep on the couch in front of the TV on Tuesday evening after dinner. But the joy of falling asleep because I'm tired because I did something physical - a 'normal' activity that used energy - THAT was wonderful. I'm not finding it too physically difficult - apart from my feet. In the two classes so far, I've tried two different pairs of shoes - we're on bare board floors, so going without shoes altogether can't happen. I have a third pair to try next week...fingers crossed. Otherwise, as Dragon Dad said, I might just have to live with the fact that they're going to hurt. I hunted online yesterday and found the 'Beijing 12' that we started learning this week - because, try as I might, I could not remember the first movement that we were taught. Damned brain fog and inherent lack of remembering physical routines...</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Getting past that emotional block about starting something new with strangers was a good feeling too. Reminded me that, actually, I CAN do it. A salutary reminder to get over myself!</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Getting back on track with the blog. This my second post this week. I'll try and keep to that if I can. It does me good to write. To get the stuff in my head OUT of my head! The trick is finding a point of focus so I don't just ramble on, because no one wants to read that. All the stuff I've read about blogging and being a 'successful' blogger make the same point - that the really important thing is regular posts. It doesn't matter whether they're weekly or daily, or something in between, but they need to be regular. While I'm perfectly capable of writing to a brief - including deadlines - one of the reasons I started blogging was to give myself an avenue to write where there weren't structures like that that create pressure. However, to make the blog WORK, there do need to be some, so I'll try...I may not succeed, but I will try. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I've also done some research, looking for new places to pitch work - it's a jungle out there, folks. I have some paid work that's semi regular, but I need - financially as well as creatively - to find other work to do, other places to publish. So I write stuff and send it out - mostly into a black hole. Typically, I've done this in bursts, having a flurry of busy-ness, and sending things, and getting all worked up in anticipation that perhaps this time I'll have cracked it - only to come crashing down as the persistent lack of responses demonstrate that, yet again, there are no takers. So, I'm looking at diversifying that approach a bit with a more balanced mix of things I'm working on, with a different spread of potential destinations. At least the writing itself will be a bit more mixed, and interesting. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Fat Mum Slim's Photo a Day challenge. <a href="http://theoriginaldragonmother.blogspot.com.au/2016/12/new-year-and-not-making-resolutions.html">I wrote about this when I first planned to start doing it</a>. It's nearly the end of April, which makes almost four months of posting a photo every day in the Facebook group, and on the <a href="https://www.facebook.com/theoriginaldragonmother/">Dragon Mother Facebook page</a>. In that post, I wrote about some of the reasons that decided me on committing to doing it, and by and large, they're playing out as I thought they would. As the daily drawing practice did (which I've not managed to pick up again so far), it makes me look at the world around me with much more attention. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">There are specific daily prompts for the photos, so there's a certain amount of daily discipline that comes with getting my head around how I'll approach that - sometimes, it feels really obvious but other days it can be a real challenge - and surprisingly difficult! Some of my results have prompted Dragon Dad to tell me that I've got some potentially serious photographic talent - which was hugely gratifying! And also that at some point when money allows, we must find me a good digital SLR camera. At present, it's all being done with the phone on my iPhone - although, I'm far from alone because there are lots of others in the group in the same position. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I've also been 'fabbed' three times now - for each prompt, the moderators select a number of photographs that they particularly liked and post a collage of them as the pinned post for the next twenty four hours. I've been ridiculously chuffed each time - again, validation, which is nice. Most importantly, I'm making new friends online. I may never meet many of them in person, but I have to say, it's an extraordinarily positive and supportive group of people, and there's lots of friendly chat on comment threads on the photos when people come to comment on each others' shots. And, the thing that prompted this particular post, there are more than a few people for whom this particular activity is enabling them to have something that they're consistently focused on which is giving their lives structure, for whatever reason - and there's a conversation happening on a particular photo today to that effect. So, to finish on a positive note, I'll upload a few of my favourite photos so far. Those of you who follow the Facebook page may have seen them already, or not, depending on how your newsfeed serves up things! For those who WANT to see them regularly and don't follow the FB page - I invite you to do find it and follow. </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwAT5rxoXaKFnEbeuoj0TDz68iETcxxvX_xqg_8Gb13TZcCg0aBOTo1G76BcoQ66rJ3Qp7Xlc9n5SwEdSg7ZOt9RtuGWQM6eotPpy4mowk_dfQanKEI5wfzF8FK5zN7rl9AmpYUqpiVRUx/s1600/FMS_13.2.17_FlatLay_PinkFlowers.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="158" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwAT5rxoXaKFnEbeuoj0TDz68iETcxxvX_xqg_8Gb13TZcCg0aBOTo1G76BcoQ66rJ3Qp7Xlc9n5SwEdSg7ZOt9RtuGWQM6eotPpy4mowk_dfQanKEI5wfzF8FK5zN7rl9AmpYUqpiVRUx/s320/FMS_13.2.17_FlatLay_PinkFlowers.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Flat lay</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNB2b5V4_ojJCsyEZP7mpBBrj0VatcQ_LsF3CWw929CddemWHfaLZfp6wcbgH0AcudACvFvVjDONY4YCbgaDWbGGLmH7cZKbUfhBK06Svnn7SffNOjznMQ0GwEX2z-K9zeJfJDZxlIMxlb/s1600/FMS_22.2.17_OnTheShelf_Treasures.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNB2b5V4_ojJCsyEZP7mpBBrj0VatcQ_LsF3CWw929CddemWHfaLZfp6wcbgH0AcudACvFvVjDONY4YCbgaDWbGGLmH7cZKbUfhBK06Svnn7SffNOjznMQ0GwEX2z-K9zeJfJDZxlIMxlb/s320/FMS_22.2.17_OnTheShelf_Treasures.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Treasures</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjagsPrd0BQvylYhAONvrV8qOmuBOR7a5P1Wq6fPa4JrwBQVIwLLj6hWAJjs57IyywJ3-oDdRLtk2qC9O6d7Svk0nQXWtNXuDg-kdAlzJSuydnvhVrJfJmlZ6hESdxVKTMvPT1yG5ig7W3Z/s1600/FMS_8.3.17_FavePartOfMyDay_Breakfast.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjagsPrd0BQvylYhAONvrV8qOmuBOR7a5P1Wq6fPa4JrwBQVIwLLj6hWAJjs57IyywJ3-oDdRLtk2qC9O6d7Svk0nQXWtNXuDg-kdAlzJSuydnvhVrJfJmlZ6hESdxVKTMvPT1yG5ig7W3Z/s320/FMS_8.3.17_FavePartOfMyDay_Breakfast.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Fave part of my day - fabbed</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9UFMdwJ9D5fFVrrK7BMq6LPDNtdey5WV0LEuzdcaua1Wu_dt8ugXximr0-RYgnSRZ0XjfnYhyphenhyphenD1P8lE9b7MoJy0KQ4foMRR4qFticjP6UfUaOeqnEs6N_k0raNx1Bc5FB2BTY8kbuczDU/s1600/FMS_17.3.17_OffCentre_CannaLily.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9UFMdwJ9D5fFVrrK7BMq6LPDNtdey5WV0LEuzdcaua1Wu_dt8ugXximr0-RYgnSRZ0XjfnYhyphenhyphenD1P8lE9b7MoJy0KQ4foMRR4qFticjP6UfUaOeqnEs6N_k0raNx1Bc5FB2BTY8kbuczDU/s320/FMS_17.3.17_OffCentre_CannaLily.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Off centre</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqxFvoQ3fgmECy_DgLWQCUM8AFC7eoFYh93ojbx4rPhSq0QfIRFre8Y-Y9Zm_KxFG0PwPlqRzOh78-whee7yv9qPttzYgTf_MH-W6JNimrwsjtpaSHt03YT9U72Tp6X68asNSusafOPRgf/s1600/FMS_9.4.17_Macro_PoppyPods.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqxFvoQ3fgmECy_DgLWQCUM8AFC7eoFYh93ojbx4rPhSq0QfIRFre8Y-Y9Zm_KxFG0PwPlqRzOh78-whee7yv9qPttzYgTf_MH-W6JNimrwsjtpaSHt03YT9U72Tp6X68asNSusafOPRgf/s320/FMS_9.4.17_Macro_PoppyPods.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Macro</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Opposites - fabbed</td></tr>
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Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com4tag:blogger.com,1999:blog-679982583847135662.post-75471444866869741992017-04-23T21:37:00.003-07:002017-04-23T21:37:39.611-07:00Fund raising and awareness of RA and other autoimmune diseases - or the lack of...<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I've been stopped twice in the last week, at the same supermarket, by people fundraising for cancer research. Now, before anyone gets up in arms, I totally get the need for cancer awareness and fund raising, and am only too thankful for the good work that's been done in the field to improve diagnosis and treatment protocols. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">BUT...and it's a big, daily but, for me... I have an incurable, chronic disease. It's unlikely to kill me, although, severe RA and its co-morbidities and complications can cause death, and has. Ask yourself though, did you know that? Readers of this blog who have RA or another autoimmune (AI) disease probably do, and perhaps some of their friends and family members. However, it's highly unlikely that the average person on the street does. Because, RA is still, in the minds of many, 'just' arthritis. Like their granny has... the odd sore joint that slows them down a bit, and hurts when the weather gets cold. Not to minimise the potential devastation of osteoarthritis (OA), either, but RA is a systemic disease - unlike OA. As is Lupus, Sjogren's Syndrome, Psoriatic Arthritis, Spondylising Ankylosis, Type 1 Diabetes, and many, many more. And not a single one of them can be cured. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Before writing more, I'd just like to say that this is a really hard post to write. I don't want to come over all whiney, and 'poor me' - that's not the aim of the exercise at all. I don't want it to sound like there's some kind of competition between cancer and autoimmune diseases, because there's not. I also don't want to offend anyone - that's the last thing I want to do. I just want people to stop for a moment and consider what I'm saying, and try to understand where I'm coming from, because that's what real awareness is about. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So where the hell are the tables with bright faced young things raising funds for autoimmune diseases? Seriously...where? </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">There aren't any... </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I don't donate to cancer research. Not because I don't think it's worthy of my money. But because thousands and thousands of people already do, and there are more foundations for different types of cancer than I can poke a stick at. So many labs devoted to cancer research here and all over the world, doing excellent work and making important breakthroughs regularly. Which is marvelous. And necessary. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">When it comes to autoimmune diseases though, that's just not the case. I honestly don't know why that is. It can't be based on the numbers. The <a href="http://www.aihw.gov.au/rheumatoid-arthritis/">Australian Institute of Health and Welfare report from 2014-2015 reported</a> an estimated 407,900 people in Australia have Rheumatoid Arthritis alone. That's - if my maths are correct - something around 1.76% of our current population. That's NOT a small number.And goodness only know what the current numbers might be.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Is it some sort of twisted kind of 'glamour'? In a world that is being fed by dramatic press headlines, those depicting celebrities fighting cancer appear to be increasingly frequent. And there is that concept of the 'brave fight', particularly when, tragically, someone dies...losing that brave fight. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">More celebrities have been 'coming out' about their autoimmune diseases. At the same time, their experience can look very different - and I've seen comments on forums where people make a point of making that an issue in itself...ie, those people, regardless of the diagnosis, have more means than the average individual to make life easier despite the diagnosis. The same could be said for celebrities with cancer, I guess. But ultimately, we're still all people, and no fame and/or fortune can change the fact that being sick - whether it's cancer or an AI disease just plain sucks. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I wrote about this when <a href="http://theoriginaldragonmother.blogspot.com.au/2015/09/elegy-for-lizzie.html">my dear friend Lizzie died from ovarian cancer</a>. It's her birthday today, along with No.1 son... Lizzie had also been diagnosed with RA some time before the cancer diagnosis. Ironically, I have seen in RA circles online people who have RA and are struggling with the kinds of lack of support and understanding that are common for many making the statement that they 'wish they had cancer' - on the basis that cancer HAS a level of awareness and understanding that autoimmune diseases don't have. There's no way that Lizzie would have subscribed to that particular idea. She was all too aware of the different playing field offered by her cancer diagnoses. Tragically, as is the case for all too many of those diagnosed with ovarian cancer, the diagnosis came far too late to offer her reasonable odds of survival. So, I've never wished I could have cancer instead of RA, just to have more awareness. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Awareness and fundraising are important though. Incredibly important. Research takes time, and requires money to fund staff and facilities so that it can be done, and done thoroughly. I did a Google search for current research specifically being done for RA in Australia, and found two main places. TWO. Two sites of research for a disease that close to half a million people in this country have. One is the Garvan Institute in Sydney, and the other is the <a href="http://advance.qld.gov.au/innovation-movement/qld-innovators/health/rheumatoid-arthritis.aspx">University of Queensland. The latter is working on what they're calling a 'vaccine' for RA</a>. I'm not entirely sure how you vaccinate for an AI disease, to be honest. From what I've read though, they've tackled the research along the lines that I've always thought seemed most logical - figuring out how to turn OFF an autoimmune system that has got stuck on overdrive...because by doing that, effectively, you stop the disease process entirely. Current treatments only slow that process down by inhibiting the overactivity. The UQ model aims at flicking an off switch to stop it. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><a href="https://www.garvan.org.au/research/diseases-we-research/rheumatoid-arthritis">Garvan</a>, on the other hand, are looking at a treatment that sounds as if it may work similarly to current biologic drugs, but it is targeting cells in the inflammatory process rather than the autoimmune process, in a way that can be effective earlier in the immune response that's attacking the patient's own cells. It could have a similar effect to the UQ model in shutting down the disease activity altogether. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">What isn't clear with either project is whether the proposed treatments are something that the patient then needs to be on long term to maintain the status quo - which, to my way of thinking, puts them into a treatment classification rather than a cure. I don't know if - should they work - you'd then have to remain on that treatment, because coming off it again would allow the disease to start up again.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3574800/">Overseas, there is work being done with an electronic implant that stimulates the vagus nerve</a> - a project that started when a neurologist (I think - I can't find the original article I read about this) started to wonder if it would be possible to interfere with the inflammatory system via the nervous system. The vagus nerve controls TNF production (tumor necrosis factor, a chemical in the system that is a primary component in the inflammatory response - the first of the biologic drugs on the market, which are still being used, are TNF blockers) so the implanted device sends a signal to the vagus nerve which stimulates a response that interferes with that process - effectively reversing the disease. Early human trials have had some promising results, although they've been relatively small samples. At this stage, the consensus appears to be that it's potentially a treatment that can be offered when a patient has failed to respond adequately to current drug protocols, as it's invasive, and once implanted, rules out future MRI scans (a major diagnostic and monitoring tool), due to it being metal. Again, like the two previous projects, my question is, does that mean that once implanted, the device has to stay put for the rest of the patient's life? Is the 'cure' conditional on the ongoing presence of the device?</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"></span><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiOnCdOaNZPxkTmXV6oOAa9MnJZeBxV7Egkq2dLoaKyjjGoGsEQLTzBtCCw6tJqOv-7bTVq00ofN2RmWUtNarvdZyCzDsXTU0a6jiFU95qg6ot0OjkbK9jWXbGvsy3xWtpSWX4YkftGXVY/s1600/FMS_18.1.17_Today_Infusion.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjiOnCdOaNZPxkTmXV6oOAa9MnJZeBxV7Egkq2dLoaKyjjGoGsEQLTzBtCCw6tJqOv-7bTVq00ofN2RmWUtNarvdZyCzDsXTU0a6jiFU95qg6ot0OjkbK9jWXbGvsy3xWtpSWX4YkftGXVY/s320/FMS_18.1.17_Today_Infusion.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Receiving the infusion of the biologic drug that's keeping my RA controlled.</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">While these projects are all encouraging and indicate to me some logical new approaches in research for RA, given the numbers of people who are affected by the disease, they're disproportionately small. And awareness of the disease and its affects on the daily lives of patients certainly isn't on the increase. On the television last night, the Ride for a Cure was being advertised. It's an annual long distance mass cycling event that people can do to raise money for cancer research. A friend of mine did a similar one last year, riding from Canberra to Sydney over three days. Dragon Dad, being a cyclist, voiced the idea that he'd like to do it one day. He did do a two day ride that was to raise funds for cancer research a few years ago - 100kms each day. I forget how much he raised, but he had to raise a certain amount before he'd even be eligible to ride. When No.1 Son did the Noosa Triathlon last year, he was racing to raise funds for cancer too. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Then, last year, I stumbled across a cycling event for RA that popped up on Facebook because of the algorithms that govern my newsfeed. I clicked on the page, and there it was - a ride from Canberra to Adelaide to raise funds for RA...only it was nearly over, and I'd heard absolutely nothing about it via any of my channels prior to the event. When I hunted around online, I found a reference to it on the <a href="http://www.arthritisaustralia.com.au/index.php/63-news/330-riding-for-rheumatoid-arthritis-research-media-release-29-march-2016.html">Arthritis Australia website two days before it was due to start</a>...but no active promotion, which I thought was appalling. The event itself was instigated by a cyclist whose partner has RA. In the conversation I had via Messenger on FB, they said it was a one off. MAYBE they'd repeat it, but that wasn't a given. Dragon Dad was really disappointed - he'd have gone and done the ride with them had he known. He'd have promoted it like crazy too, because that's how he rolls. He'd certainly have contacted all the television stations and newspapers to try and get coverage - as there is for the cancer ride. I don't know how much money the cyclists raised - there was no follow up on their FB page or the Arthritis Australia site. Given that that's our mainstream agency in this country, that's just not good enough. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Both of the times I was accosted at the supermarket last week, I stopped and said that no, I wouldn't be donating, and I told the girls why. The first time, with two girls on the stall, one of them introduced herself and asked my name, then told me she totally understood, as her mother had recently been diagnosed with MS, which has now been classified as an AI disease. She wished me well. The other girl with her tuned out and looked as if she was trying to be anywhere else but there at that moment. Similarly, the second time - one girl on her own - she looked uncomfortable, and clearly didn't know what to say, so said nothing.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Somehow, this status quo has to change. These diseases, collectively, affect millions of people in Australia. There needs to be better research funding, because if cures CAN be found, many of those people will be able to re-enter society healthy and capable of living fuller lives than many currently manage. It will mean many will be able to go back to work - something so many of us can no longer do. It will mean fewer people are living with chronic pain. It will mean so much for so many... So, next time you have an opportunity to donate to medical research, think about the diseases that don't receive so much funding, and maybe pick one of those. </span>Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com18tag:blogger.com,1999:blog-679982583847135662.post-57541819587958396732017-04-08T23:16:00.003-07:002017-04-08T23:16:56.763-07:00Rheumatoid Arthritis - on NOT being a hermit...<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I'm a fairly gregarious individual. I like spending time with people, going places, doing things... I belong to the extrovert end of the social scale - not at the extreme end, but I'm definitely not an introvert. Having said that, I am shy. I've always found it difficult to launch into new activities where I don't know anyone - walking into a new situation knowing no one is something I find very challenging. I don't always find it easy to fit myself in socially. Growing up, we mostly associated with family, so there weren't 'events', as such, where I learned how to make small talk and do the social 'thing'... </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">One of the more insidious things with chronic illnesses is that it can get very easy to have your world shrink. Pre-2013, I was working, getting together with friends, going to gallery openings (I was doing a reasonable amount of exhibition reviewing), swimming regularly, going to different events as opportunities arose, and so on. A fairly regular, busy, contemporary life. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Now, a visit to the cinema is a highlight, and the most social I'm being is the odd coffee get together with a friend. We've been going to shul semi-regularly, but haven't really got very involved at the synagogue apart from attending those services. Occasionally, we head to friends down the Mornington Peninsular for a drink or a meal. Mostly, if we go out, we're prowling different areas of Melbourne and finding what might well become familiar haunts - just the two of us. I've found Tai Chi Australia, and have been in touch. The most logical place for me to go to classes is about a 15 minute drive away and the next beginner class starts on the 18th of this month. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Here's the thing though... I'm dreading getting to that first class - finding the school where it's being held, finding parking, finding the room, and then walking in not knowing anyone. I want to ask Dragon Dad to come, only he doesn't want to do Tai Chi, and I'm aware of just how pathetic that would make me sound. He's asked me a few times why I've not gone to services at the shul on my own, when he's not been able to go... A part of the reason is that the Friday services are at the end of the day when I'm most tired, so I dread the drive back after I've sat for an hour at the end of the day and am really stiff and sore - and that's what I've told him. But also, it's the whole going by myself thing, because I really don't know many people at the shul, and those I know are passing acquaintances, not actual friends. I've still not emailed the cantor about the choirs, which would alleviate that particular situation since once I'm involved, there'll be a core group of people within the community that I will get to know, and I'll have a 'place'... But it's still that initial step.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Why is this...? </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Part of my reticence is our current extremely tight financial situation. There are a number of things I've found that I could do - which would both throw me into getting to know people, as well as getting me out doing things I enjoy, but they cost. And we really can't afford extra expenses at the moment. Tai Chi fits into overall health care, so it's a priority that can be sorted out financially, along with other things that Dragon Dad's doing for his health and fitness. Some of the others, while no doubt good for my mental health don't feel that straightforward.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Another critical element is that new people mean explanations. When it's just Dragon Dad, or friends I have here already that go back some years, I don't have to explain. I can say I'm not well, and they're sympathetic, but don't need me to explain. Strangers are another thing altogether. My old friends have known me before this severe phase of the disease. They're not happy I've got so sick - for my sake. But they know who I am, what I've done, what I can do, etc. They know the whole me, not just the 'sick girl'... There was a time when I could walk into a new situation and it wasn't necessary for anyone to know. I was well enough for it not to show, and for me to rarely need accommodations to be made. If I cancelled something, it was usually for some big and immediately understandable reason - not because I was having a bad day. Because my 'bad day' now is about being too ill to manage something - too much pain, or too much fog, or too many side effects immediately post infusion, and so on. For instance, the Tai Chi class I'm looking at is on a Tuesday. So is my infusion, every fourth Tuesday... So, once every four weeks, I'll need to go to a different class on a different day, because the end of the day on infusion day is definitely not going to be an option. I'll have been sleeping most of the afternoon and I'll have the headache from hell, and a level of drug infused fatigue that's impossible to get past. I won't be capable of driving or being as physical as the class will require. And I'll have to tell them that - and make arrangements for which class I pop up in like a bad penny every four weeks...and tell the teacher of that class too. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Little by little, all these bits and pieces of emotional baggage start to add up to the point that they can end up looking like an enormous wall of 'stuff' that just can't be scaled. But I don't think I'm alone. I suspect that this is a phenomena that many of us with chronic illnesses know and understand, even if it's not something we articulate for ourselves or anyone else. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">My rational self tells me that it's going to be FINE. That I don't need to get myself into such a state. Because when I do scale that mountain, things usually are OK. The friend I'm seeing most frequently at the moment is a new friend, in physical terms. I met her online in an international RA support group, and invited her to joint the Australian one I'm involved with. Then it turned out she lives in Melbourne so when we knew the move was really happening, I tucked that away in the back of my head for when we finally moved. I didn't do anything about that after we'd made the move though, not immediately. For one, there was that whole 'do I cross the line from online contact to face to face?' thing that's very much part of the online world vs real time. But also, it was that whole thing about taking that first step. Then I had a crisis situation that she became aware about via an online conversation, and in the end we did meet up in the next few days. Because it turns out we don't live very far away from each other, so it's REALLY easy to get together. And it's been lovely - given the context of how we met in the first place, we don't have to explain anything about illness, because we're both sick! </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So, things can work. I know this. But I've had almost three and a half years of my life steadily shrinking and it's really hard to acknowledge that I've got a part to play in that, and if I don't want to end up being completely isolated, I need to put my big girl pants on and just step up. Which is, ultimately, what this blog post is about. I'm putting it out there. Saying it out loud so I have to do something about it, because it's not hiding away in my head any more! Those of you who read this post now know too...so I now - well, once I hit publish - feel like I'm accountable! </span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Wish me luck, folks. It's time to crawl out of my shell and start making my life happen again. And if I can do it, so can you, so tell me your stories! </span>Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com11tag:blogger.com,1999:blog-679982583847135662.post-38573812232845096042017-03-29T20:01:00.001-07:002017-03-29T20:01:07.363-07:00Rheumatoid Arthritis and managing depression<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">It's been a difficult month. The weather has been all over the place. My body's been all over the place. Dragon Dad's been all over the place - with injuries, his appendix, stress with the business... And my head has been all over the place too.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">It's difficult to keep a positive focus when there's too much going on that isn't great. I see all the 'practicing gratitude posts' on social media, and to be honest, they make me feel a big up-chucky... I do get the concept, but it just doesn't do it for me. I sometimes wonder - so cynical - how much 'fake-booking' is going on when I see them. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Years ago, after decades of living behind a protective facade resulted in something of a breakdown, I promised myself - once I'd put myself back together - that I'd not let another facade build up again. Ultimately, it was destructive. That meant figuring out how to live authentically. And I know that's another buzz-wordy sort of concept, but I can't think of a less cheesy way to put it this morning! I do use publicising odd things I plan to do as a tool to make myself actually do them - once it's out there, I have to own it and then come up with the goods type of thing. Because I'm excellent at procrastinating, and then landing hard up against deadlines in a mad tizz of self-inflicted pressure and stress. So, I guess part of me looks at those gratitude posts through that filter. And it's why I've never succumbed to the trend - apart from generally avoiding trends anyway! I can just see myself managing a couple of days of posting my three things, then hitting a trough and having to face a choice between making it up, missing it altogether, or being brutally honest and posting that my day is shite and I'm not grateful for anything! </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So, I hibernate. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">There does come a time though, when I realise the hibernation itself is becoming dysfunctional. I managed, last week, to not go out of the house at all between early Monday morning (had to fill a script) until late in the day Friday (HAD to get groceries...). Given my practice of going out for coffee, which I partly started to make sure I DO get out, I realised I was going down the rabbit hole and I'd better jolt myself out of it. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Hibernation is fine - within reason. Sometimes, it's just all too hard, and adding the social requirement to be reasonably civilised when you interact with others - particularly strangers - it's the sensible thing to do. But it can become a trap. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I'm not naturally introverted. I can be shy of new people and new situations. But on the whole, I like being out and about doing things, seeing things, meeting people, etc. I like getting out with Dragon Dad prowling markets, going to art galleries, the cinema, window shopping, and the like. One of my red flags is when I find myself avoiding those things. Reaching the middle of the day still in PJs. Making coffee at home or asking Dragon Dad to bring me one on his way back from errands. Not making the phone calls or sending the emails I should (there's now a long list...including the blasted dentist as of this morning, because that same back tooth that keeps breaking has lost another chunk!). Not initiating chats with friends I spot online. And so on...</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">My body has been crap this last month. <a href="http://theoriginaldragonmother.blogspot.com.au/2017/03/rheumatoid-arthritis-infusion-day-plus.html">I started to deteriorate early in last month's infusion cycle</a>, and then in the week prior, Dragon Dad did his whole appendix drama and the extra running around combined with stress tripped a flare. It took a long time to claw my way back from that, and it was really starting to feel as if I were in for one of those months when there's just no improvement. The last couple of days have been a bit better though, and that does help my state of mind. It's frightening and confronting when there's a really big, extended flare, because then it starts to feel like I'm hitting a new low spot physically that is an indicator of further losses that could become the new normal. The reality is I probably have slid further, but until I sort out some imaging and review results along with the monthly bloods (although, they're rarely conclusive) with my rheumatologist, that's just my gut feeling. Although, with a chronic, degenerative disease, it's not way off the mark to be thinking along those lines. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So, given a couple of better days and articulating to a friend this morning that depression is reaching out its grabby little tentacles again, it's time to push myself to NOT get pulled under. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Consequently, that friend and I have arranged to meet up tomorrow in the real world, to have coffee and a catch up. She's also been having a bit of a rough time lately disease-wise, so there's absolutely NO requirement to put on a face, thankfully, or try to explain - she gets it. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I sorted through yarn and patterns yesterday, and started knitting a scarf. Given that my absolutely most favourite jumper reached the stage where it's obviously old and eroding on the edges, along with a favourite cardigan, I need to look at adding warm layers to my wardrobe with the yarn and patterns I have in the stash - because that won't require any financial outlay. So, the scarf, which is a quick project, will get me back in the groove again, and ready, when it's finished, to embark on a new jumper/cardigan project. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I will find a Tai Chi group - that will hopefully not cost too much, because there's just no money at present for extras. It could be argued that it's not an extra, except that it will cost money, and anything outside the essentials at the moment is an extra. But I need to be moving more, and that is a good choice as it'll give me the exercise, as well as getting me out and involved with some new people. I did find someone fairly close by who teaches a fusion of Tai Chi and Yoga, but she's $25 per session. When I looked into Tai Chi in Sydney, the Tai Chi association charged $95 for a ten week term...so hopefully I can find something like that here. To that end, I've left some money from my last pay cheque in my account in case I can find an affordable group.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I will also email the cantor at our shul - finally. The shul has several choirs, and one of the things that was always on the drawing board with the move here was to get back to regular shul going, and get involved musically. I was a professional chorister at the shul in Sydney where we used to go. I've not been singing for some time now, and it's time I got back to it. I also need to sort out some regular drawing. The Tai Chi has priority financially, so the life drawing group I've found will have to wait but there's no reason at all not to be drawing at home and trying to find a market for the work - which will mean, hopefully, more income, and therefore more options for activities. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So, have you seen what I've done here? Put a list of goals to meet out in the public domain as incentive to get them done! So, feel free to call me on any of them, if I don't report back soon to say I've got at least some of them in train... </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Meantime, the one thing I have managed to keep going is <a href="http://fatmumslim.com.au/how-to-play/">Fat Mum Slim's Photo A Day challenge</a>, which I'm participating in on Facebook. It's great fun, it is social (I've added a new FB friend as of last night), and I'm learning lots. I also definitely now want a DSLR camera...!! With lots of different lenses. Although, I continue to be amazed and surprised by what's possible to achieve with an iPhone camera. I've just made up the collage of all my images from March (because I've taken tomorrow's photo already, and I needed something fun to do this morning...to get me past the black dog) and here it is for your enjoyment. I got fabbed - chosen as one of the images of the day - for the photo of my morning tea mug and novel (in the top right hand corner of the collage), which was a lovely surprise and boost. And now I have a list of things to get onto. How do all of you manage creeping depression?</span><br />
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Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com4tag:blogger.com,1999:blog-679982583847135662.post-27892266134142302372017-03-14T17:32:00.002-07:002017-03-14T17:32:15.865-07:00Rheumatoid Arthritis - Infusion day plus one...<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Back when I was first diagnosed, there were far fewer treatment options available - mind you, there were still many more than had been available not all that long before that! There were a few DMARDs (Disease Modifying Anti Rheumatic Drugs), but they were administered singly, whereas now, they're used in various combinations as it's been found that that's much more effective in controlling the disease. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Move on another decade and a half, and well within the time when I wasn't seeing a rheumatologists, and the first of the biologics became available. These are now the most powerful drugs used to control RA. They're made from live human proteins, and they target specific parts of the autoimmune system in ways that interfere with disease activity - basically, they slow it down. I wrote a post about them for RABlogWeek last year which you can read <a href="https://theoriginaldragonmother.blogspot.com.au/2016/09/rablog-week-2016-post-no3.html">HERE</a>. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I'm on Orencia. I started with weekly injections, but transferred to four weekly infusions, because I get a bigger dose that day. It has been good. It's definitely given me a significant improvement. I had my infusion yesterday, and it went well. It's hard, being needle phobic, having to have regular infusions, but the hospital where I go is nice, the staff are excellent, and they've been very understanding of my phobia and do everything they can to make sure everything goes as smoothly as possible to minimise any extra trauma. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Today, I have the headache from hell, which is a side effect I experience every time. I got it after every shot too, when I had those, so it can be argued that that's another benefit of the infusions, because now I just get it once every four weeks. It's a doozy. I feel as if I've got a massive clamp on my head, around my temples and eye sockets, and it's squeezing. Just nasty. The fatigue hits hard too - I crashed and slept for a few hours on the couch yesterday afternoon. And slept like a dead thing last night in between the times I woke up in pain. I'm still flaring - the flare that was tripped when Dragon Dad had his appendix emergency. So I went into this infusion in a bad way - pain meds upped to the max, still a lot of pain, and noticeable swelling. I'm sitting typing and am desperately trying to ignore my knees, which have skewers through them, twisting and turning, and my feet and ankles which are both burning and have awful pins and needles. So, I'm anticipating it'll be a good few days before I can expect any real improvement this time around.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I'm also starting to think that it's time to have THE conversation with the rheumatologist about whether it's time to look at changing biologics. This is a tough one. While the headache, fatigue, and sinus congestion (which I sometimes also get to varying degrees) aren't pleasant, they're doable, as far as side effects go. They could be much worse. I could be throwing up all over the place, or worse. And it is still having SOME effect. I have around two weeks in the middle of the cycle when I know I'll be doing OK. But the week leading up to the infusion can be dodgy as the beneficial effects of the drug start to wear off, and the week following can depend as much on how bad that last week was, as well as how bad the side effects are each time. So, it's highly unpredictable. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">I used to do better on this drug. There were some months I could get my pain meds down to one 50mg Tramadol SR for the day time. At the moment, I'm taking 150mg... And 200mg at night - so I'm pushing the outer limits of what can be taken. And while it helps, I'm by no means pain free. Last week, I was needing to top up with oxycodone. Add to that the deterioration in my shoulders, the now regular swelling and pain in my ankles that didn't used to be there, pins and needles in my feet - which suggest my circulation is being compromised, significantly more pain in my knees, and so on, I'm wondering whether it's the drug not being as effective, or whether it's a significant increase in disease activity.</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">It's a hard call. Given my ability to have extreme reactions to new medications, giving up a drug I know I can tolerate is a hard decision to make. Facing taking a new one is like facing stepping off a cliff. And then there's the issue of knowing exactly what's going on. IS it the disease getting much worse? And what does THAT mean? It's not something I let myself dwell on - because that's a pointless waste of emotional energy. But dealing with the everyday realities of a disease who's only known trajectory is that it gets worse, and having experiences that suggest that that's actually what's going on... That's really hard. And I don't know if I'm ready to face that. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Relatively speaking, I'm still doing very well. I'm mobile, independently functional, and can do lots of things - and enjoy doing them. At the same time, I'm very aware that I don't feel very well at all most of the time at the moment. And that wasn't always the case. So something has changed. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">My next appointment with my rheumatologist is in May. And I have two more infusions before then. Anything could happen between now and then... </span>Kazhttp://www.blogger.com/profile/06883203750700550391noreply@blogger.com6