Rheumatoid Arthritis and Disability - International Day of People with Disability

 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. 

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... 

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. 

I wish I had the ability now that I still had back then. 

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. 

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 my warm body could no longer be guaranteed. 

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. 

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. 

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. 

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. 

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... 

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... 

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.

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. 

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. 

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. 

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. 

But, if someone comes up with a cure for RA, believe me, I'll be lining up for it. 

Work in progress, mixed media

Rheumatoid Arthritis in the Time of Covid19

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. 

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. 

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'... 

So, I struggled with the prompt. It also coincided with the month of June which is a difficult one for me. My mother's yahrzeit (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. 

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!

 

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.

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.

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.

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.

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.

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.

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.

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.

I am becoming a hermit.

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.

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.

I am 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.

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.

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.

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.

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.

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.

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.

I am mindful of what that could cost me in productivity.

I am between a rock and a hard place.

I have been here for some time now.

I don’t like it.

I want it to change.

I need it to be different.

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.

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.

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.

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.   

It could be a long time before going out is safer.

 

 

Letter to my absent son

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 HERE, for context.

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. 

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.

                _________________________________________________________

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...

I see you've deleted that profile from FB now.

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. 

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. 

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. 

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.

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.

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. 

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. 

 Anyway, enough. Just know that I love you. You're my child. Nothing changes that, ever. xxx

Rheumatoid Arthritis: Working and Earning with a Chronic Illness

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...

Suffice to say, life has been very difficult, stressful, and emotionally draining for the last six months, hence the radio silence. 

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.

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 this post. 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.

So, what to do?

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. 

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. 

Cue 2013 and the RA going berserk, and suddenly I had a massive road block to any full time employment.

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. 

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. 

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. 

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.

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 HERE - 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 HERE, 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.

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!

 

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 HERE. 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.

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.

Rheumatoid Arthritis and Stress...

Everything else – 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.

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 HERE. 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. 

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. 

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. 

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. 

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. 

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. 

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...

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. 

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.

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. 

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. 

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. 

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. 

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! 

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. 

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. 

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.

Rheumatoid Arthritis and the Acadmic

Research – 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'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...

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.

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. 

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...

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. 

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. 

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. 

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. 

I have sero-negative RA. I've never shown a positive rheumatoid factor in my pathology. In a study published in the journal Rheumatology, 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. 

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!

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.

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...! 

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 HERE. 

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. 

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!