Thursday, 27 September 2018

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 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 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 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.

Wednesday, 26 September 2018

Rheumatoid Arthritis and the Acadmic

ResearchDo 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!

Tuesday, 25 September 2018

Chronic Illness - Buzz Words and Trends in Self Care

Mindfulness What does mindfulness mean to you and how can it help as we live with our autoimmune condition?

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. 

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...? 

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 gong 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.

So I Googled 'mindfulness' and found an Australian government website with a short - 2 minute read - you can read it HERE.

So, here's the thing...according to that definition, I already practice mindfulness. Who'd a thunk?! 

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. 
Into the Vortex, Mixed media on cartidge paper, 20.11.94
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. 

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. 

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. 

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. 

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! 

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.
#100DayProject drawings, graphite on cartridge
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. 

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. 
Selection of photos from this year's Photo a Day

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. 

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 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.

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. 

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.

Monday, 24 September 2018

Rheumatoid Arthritis - Tips and Strategies for Living Well

 TipsHow do you stay fit, cope with stress, relax, or capitalize on a great day. Tell us your secrets for the best life possible.

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.

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. 

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. 

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 THIS POST for a brilliant bread hack if you want to make your own and it's the kneading that's stopping you!

I digress... 

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.

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.

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. 

Household stuff
I'm a creative - I don't find housework a creative 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! 

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. 

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 cucina povera skills from years living as a sole parent are on in full force. 

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 THIS POST 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.

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.

Friends and family
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. 

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. 


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. 

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. 

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! 

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.

Sunday, 23 September 2018

The Medicine - Pain Meds and Dealing with Doctors

The Medicine 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.

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.

So, the topic... Medicine. This isn't one of the topics I'd have chosen, but I'll have a go anyway...

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.

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.

For many, many years, my RA was very mild and slow moving - the story of my diagnosis and progression can be found in THIS POST. 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. 

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! 

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. 

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.

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.

He's been very good. There have been two visits where I've had to insist on a particular course of 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.

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. 

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.

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.

He's the GP I wish ALL chronic pain patients could have.