Monday, 21 August 2017

Rheumatoid Arthritis - New Pain Management Plan.

Many thanks to everyone who's read my last post and left comments. As those of you with chronic illness know, this can be a weirdly isolated life, when the disease is severe and interferes with our ability to hold down a regular job, and be out and about the way most healthy people are. So the social contact that comes via the Internet can make a very big difference. 

I mentioned in that post that my pain levels had reached unmanageable levels. Slow release Tramadol was the basis of my pain management - with Endone (an immediate release opioid) as required for breakthrough pain. The maximum dose for the Tramadol within a 24 hour period is 400mg. I had reached a point where I was taking 150mg in the mornings, and 200mg for the evening dose, so I was pushing that. And it wasn't cutting it. Particularly as I neared the end of the four week infusion cycle. Plus, I was SO fogged up with all the Tramadol that I wasn't functioning well, cognitively. As well as discussing a possible change of biologic drugs with my rheumatologist, we did talk about pain management, but he doesn't prescribe my pain meds - so it meant an appointment with my GP. 

One of the things about the interstate move a year ago was facing the thought of finding a new medical team - and breaking them in. I'm not a passive patient. I'm compliant, once a plan has been nutted out that I'm comfortable with, but I don't just sit and let the doctors work it all out without taking my feelings and contributions into account. I had a brilliant team, between my GP, rheumatologist and physiotherapist, in Sydney. 

Thankfully, my Sydney rheumatologist had someone in mind for me, an old colleague and personal friend. He knew I needed another specialist who would work collaboratively with me and, most importantly listen to me and REALLY hear me...because in the past, that's been an issue. It nearly always is a big issue when you don't present medically within obvious and traditionally recognised parameters. I am sero-negative - ie, I don't have, have never had, a positive rheumatoid factor in my blood. Around 20-30% of people with rheumatoid arthritis are seo-negative. SOme of the more traditionally recognised features of RA don't tend to be as overt with sero-neg RA - such as swelling. I DO swell, but I rarely have the big balloon-like swelling that the doctors expect to see, so unless you know my body well, it's unlikely you'll notice the times I am swelling. My Sydney rheumatologist learned what to look for. My new guy here is learning too - very fast. He's taken good time during consults to check me out very thoroughly, and I'd say, apart from the letter that I had with the referral, my Sydney guy had called him and had had a chat at some point before we met.

The GP was the next person to find. My Sydney GP didn't have anyone she could refer me to here, so I had to play a bit of roulette - that's certainly what it felt like. My new GP is proving to have been a very good discovery. So, I headed in last week to discuss the pain management issue. We went over where I was at with pain meds and NSAIDs. He's stressed the importance of keeping the dose of the latter up - so, that's 100mg morning and night of Celebrex, and Losec in the mornings to help protect my stomach, as they can cause gastric ulcers. Next was the analgesia. 

Tramadol is an opioid like drug. It's scheduled, so to get a prescription for more than twenty tablets at a time, AND repeats, requires a phone call to the PBS - Prescription Benefits Scheme - to get permission to make the bigger prescription - which saves on doctor's visits, as it's a drug you almost always have to get prescriptions of by actually seeing your doctor, which means another charge for the visit, and so on... Typically, I've been maintaining prescriptions for the 100mg and 50mg tablets, with authority scrips for three boxes at a time with five repeats.

We batted a number of different alternative options around. The one point of agreement was that I was going to have to have an opioid as the base medication. While there has been huge noise in the media about opioid abuse and there are plans here, I believe, to start restricting the prescribing of them, as is already the case in the USA, thankfully, my GP is a chronic illness specialist GP. He understands chronic pain, and the difference between chronic pain that is chronic illness based and that which results from an injury. He has no issue with them being used - appropriately - to manage chronic pain that's the result of a disease like RA. For me, at this point, it was a question of the mode of delivery. Ultimately, after some discussion, I've ended up with a transdermal patch that I replace every three days. Each patch delivers 12mg of Fentanyl per hour over 72 hours. With that, he prescribed 50mg of Tramadol in the mornings and 100mg at night. And Endone for breakthrough if I flare.

It's been a week since that appointment. I am feeling noticeably better. The pain IS more doable. Overall, the 'normal' pain is less. I'm more aware of the degree of stiffness I'm experiencing - that's particularly noticeable in my hands - typing this post is taking me about twice as long as it should due to all the typos I need to correct when fingers land on the wrong keys! If I sit in one position for too long, I have real difficulties getting up again. I'm excruciatingly stiff in the mornings - all this stiffness was being masked by the amount of pain I was in and being lumped in with it... That Tai Chi I'm doing is going to HAVE to become a regular morning thing - once I'm mobile enough in the mornings to warm up and work my way through the Beijing 12. It will, I hope, then set me up for the rest of the day. I'm much less fogged, and have found I have a bit more energy - that was being sapped by the amount of pain I was in previously. My head is clearer for not being fogged up by the large amount of Tramadol I was on.

Time will tell, of course. I'm now starting week four of the infusion cycle, with my next one due on Tuesday next week - this is the week when I can anticipate some deterioration. So it'll be interesting to see how that plays out now. Hopefully, it will be a bit better than it has been. I'm sleeping better too, in between waking due to pressure pain in my hips and shoulders that wake me and require some major re-positioning before I can drop off again. 

I'll be back at the GP next week to review this first fortnight with the patches, and get the next prescription if he decides the improvement has been good enough to settle with this as the plan... So, I'll report back then, if not before!
Poppies, in honour of my new analgesia - photo by me.

Monday, 14 August 2017

Rheumatoid Arthritis - when the penny drops that it's forever

I've been MIA for a while now, I know, and for regular readers, my apologies. It's been a tough six months or so. I've had increasing pain, therefore increasing analgesia accompanied by increasing brain fog. The Orencia infusions have been giving me a couple of good-ish weeks out of the four from infusion to infusion, and I'm well aware that that's not good enough, but it's also been a busy and pressured time with a number of other things going on.

The emotional impact has knocked me for a six. Those of you who follow The Original Dragon Mother on Facebook - link HERE - will have been watching daily photos going up from Fat Mum Slim's Photo a Day challenge, as I chose to drop them on that page as well as within the FB page for the group. And not much else. Certainly not blog posts from me. As I've written previously, I started that photo challenge in January this year, partly to try and kick start my art practice again - in my mind, I had optimistic visions taking a photo each day to post and doing a drawing each day too. That hasn't happened. The photos, yes - the drawings, no. I've been writing for work as the assignments come in, but nothing else, really. Deadlines for competitions have come and gone, and ideas to pitch have sat in the slush pile with nothing happening to them. Eventually, I stopped and looked at all of that, and recognised all the signs of depression, and then had to come to grips with what was going on. 

Rheumatoid arthritis, like all autoimmune diseases, is chronic, incurable, degenerative and painful. For twenty years after my initial diagnosis, I got off extremely lightly. Flares aside - they were nasty and debilitating - it was mild, and manageable. When the wheels fell off in 2013, it all happened very fast. Before I knew what had hit me, I was in hospital barely able to walk, hot on the heels of having pretty much lost July of that year to Methotrexate and the brain fog that was more like a complete brain wipe out, because I really don't have memories of that month at all. There were so many doctors, so many tests, so many drugs, and then more drugs, and reactions and allergies, then different drugs, constant testing and monitoring. It's a really BUSY thing, having a chronic illness. Meantime, there were other pressures - stuff with Dragon Dad's business, family stuff, our interstate move, the inevitable isolation that happens at the beginning of establishing yourself in a new place, new doctors, etc, etc... BUSY. Then things started to settle. Routines got established. I acquired friends on the ground that I could meet up with and hang with. Dragon Dad put the business on hold and got a job in real estate - something he's always wanted to do - and started being gone a lot.

And I was a bit of a mess, to be brutally honest. Even he doesn't know how bad its been - that would be an added pressure he just doesn't need. The Photo a Day challenge became, quite often, the thing that got me out of bed. Sitting on FB chatting to people in the group via comment threads on photos became my main socialisation. That, the cafe down the road, and meetups with a few people I see regularly. Until I realised I had to come to grips with it all or I was going to get myself stuck in that safe little rut - and that's not a healthy option. 

The crux of it, in simple terms, is that I'm NEVER GOING TO GET BETTER. Looking at those words is awful. Living it is worse. How I am right now is, possibly, the best I'll ever be looking ahead in time. I don't know. I'm looking at a change in biologics by the end of the year, if not sooner. I've just rejigged my pain management drugs and am getting acquainted with my first opioid as the base medication, in the form of a patch on my arm. A new bio may work better and change everything. It may not. What it won't do - what it can't do - is make it go away. Nothing can do that until the scientists who are doing the research figure out a way to cure the disease. 

There ARE worse things. I do know that. And there are people I know - good friends - who also have autoimmune diseases, some of them have multiple diseases, who are far sicker. Are in more pain. Have much bleaker outlooks. And I feel for them, and try to support them as much as it's possible for someone who's geographically distant in some cases, but at best, just a pair of ears. Here's the thing though - there is a lot of 'competition' about degrees of illness and disability in the online world of chronic illness. It generates, at times, some very bad behaviour online. That disgusts me. We all have enough to deal with on a daily basis without that crap. This isn't about me trying to make a case for how sick I am. This is me trying to come to grips with, and explain, what the sense of confronting a long term, incurable disease is like. Because no matter how severe or mild it may be - and I've now had the dubious privilege of experiencing a wide rage of those - it's ALWAYS going to be there. 

That's what's had me hit the wall over these last few months. Having the absolute reality of that really sink in. I am ill. Ill enough to require specialist care for the rest of my life, powerful scheduled drugs to control the disease, and to have to take each day as it comes, knowing that some days I simply won't be able to manage the things I had planned and will have to cancel. I will always be ill. It's hard. It's confronting. It's pretty damned scary. I'm in pain. I can't remember the last time I slept through the night so I'm always tired. My patience - never my most outstanding personal characteristic - is in very short supply. I just don't have the energy to be patient with so much of what life can throw up. Nor do I even have the energy to lose my temper when things really jam themselves up my nose. That pisses me off - that catharsis of having a really good big temper tantrum (regardless of the grovelling afterwards that might be necessary) is lost to me because I just can't afford to waste emotional and physical energy like that. 

I don't know if I've made a lot of sense in this post. I'm still not really OK. I'm still really struggling with this. I still haven't talked to Dragon Dad about it because he's SO preoccupied with the pressures of his new job and the targets he needs to meet that his ability to sit through me fumbling around trying to make myself clear is just not there right now.  It's also something that will worry him and add to his stress, which is already considerable. So I'm telling anyone who reads this instead! Because I have to say it all in some way before I implode, because until I own it, I can't work my way through it. So here it is, in all its messy glory... Watch this space. Now I've opened the dam gates, there will probably be more to come!

To wrap up, here's one of my recent photos - because it's far nicer than a photo of my arm with a cannula in it, or a photo of my current meds, or anything else RA related... It's a sunrise taken from our back yard one morning a few weeks ago - straight off the phone camera too - no editing. It really was that intense and beautiful!

Saturday, 13 May 2017

The rheumatology review...

Well, that was a big, big day.... Note to self: in future, make rheumatologist appointments on a different day to infusion day. Part of me though, oh, it'll be OK, because it's all in the same building, so I don't need to run around, yada yada, yada... But I did have to hang around much longer than if I were just doing one or the other, and I was hanging around after the infusion...which meant the side effect headache was kicking in by the time I was finally heading home, and I was on the road at the time I'd usually have been falling asleep on the couch. 

So I didn't make it to tai chi that night - and I really need to find the You Tube video of the Beijing 12 we're learning so I can review the first two parts and learn the third part which I missed... And do that over and over to fix it into my non-retentive head, before loading up with the fourth section this week! 

However, it's been a reasonable aftermath to the infusion this cycle. The headache is largely gone. I still have an exceedingly stuffy head - who else gets really snotty sinuses as a biologic side effect?? But I'm back down to 100mg Tramadol morning and night - last cycle was the first time in months that I'd managed to achieve that, and thankfully, after a few days of it needing to be bumped up, I'm back down again. 

One of the things that happened with the rheumatologist this time round was X-Rays of my feet and ankles - which have been particularly vocal for some months now. Apart from anything else, the images give this new rheumatologist a base line to work from. I have two sets of MRI images of my hands, taken around a year apart, but they're from a few years back, and they're my last rheumatologist's baseline images. 

The good news is, there's NO damage in the joints of my feet and ankles. After a bit over three years of biologics - two and a bit on the current one - what that means is that, despite ongoing pain at varying levels, it's actually doing its job - i.e. slowing down the progression of the disease. Those MRI images were of my hands and wrists, and were part of what we needed to confirm diagnosis for the biologic applications, because my blood test results are often quite ambiguous. They showed erosions - holes - in bones in my hands and wrists, caused by inflammation. That happened over the years when the RA was - so I thought - so mild that I wasn't on any DMARDs (Disease Modifying Anti-Rheumatic Drugs). Clearly, although the pain levels weren't bad enough to send me to a doctor for anything more than anti-inflammatories and low level analgesia for flares, there was damage occurring. So, to have the levels of pain I'm having but to discover that my ankles and feet are still damage free is a win. We just need to get the pain management working better! 

We're still tinkering with anti-inflammatories. After the last visit, I swapped from the one I was on to a different one. It offers a bit more flexibility for me as it's a fast acting drug, so if I vary the dose, the results of that variation are much more immediate. At the moment, I'm taking one in the mornings. Perhaps if I up that to add a second one in the evenings it'll be enough to get better relief. Upping the pain meds helps, but it also adds significantly to the level of brain fog - and that's definitely becoming more of an issue. 

The thing I forgot to mention at the visit - even with a list for the doctor, things get forgotten - is the pain in my right hip. Back in 2013, when the wheels fell off, I was getting a lot of hip pain - on the outsides of my legs. That ended up being tendinitis which, with heat and a lot of targeted physiotherapy, was cleared up. It took a long time, but it did improve a lot. This is pain in my groin - in the joint. So it means a quick trip to my GP and a chat about possibly X-Raying the hip, or some other kind of imaging, because the pain is fairly constant now, and is waking me up at night sometimes. HOW I managed forget to mention it to the rheumatologist is beyond me - note the 'note to self' above... But there's definitely something going that wasn't going on before, so I need to get it checked. 

Apart from the hip though, the overall result of this latest review was pretty much to keep doing what I'm doing. Maintain the status quo... Which is good, overall - there's no actual BAD news there. But it's also frustrating.

Perhaps the worst thing about chronic illness is that, even when you're doing 'well', you're NOT well. I'm still sick. And I can't honestly remember the last time I felt well. And that gets very frustrating. While it's reassuring to find that the biologic is doing its job, along with the pile of other drugs I'm taking, the reality is that that doesn't mean I'm getting better. Because I won't. All that will happen is that I'll continue to get sicker...albeit that that process is being significantly slowed by the drugs. 

It's a very mixed experience which is very hard to articulate. I AM very grateful for the medications that are helping hold the beast at bay. I am grateful to have found a combination that I can tolerate and that are having a positive effect for me. But it's frustrating that they don't make me feel better. 

Biologics are held to be the miracle of RA treatment that have changed the lives of countless RA patients. And they have. Treated early, RA is now a chronic disease that can be managed and if caught early enough, can have a much less severe impact on the lives of the people who have it. And that's the truth for many, many people. 

However, for those for whom the meds don't work, or those who - like me - got to the big guns meds too late, that's not the case. I can't work any more - not in a regular job for someone else. My body just isn't reliable enough for me to commit to being somewhere for regular hours every day. I need to build up the freelance work I do so it can earn me a better income - perhaps then I won't feel quite so flat about the whole work thing. There are many forms of exercise I can no longer do. There are activities I can no longer do - and they're not all big things like climbing Machu Pichu... Managing a set of tongs when frying something for dinner is becoming a HUGE issue. And I'm still on the lighter end of the severe scale. 

I can still walk, albeit with pain. I can drive, ditto. I can shower and dress myself - there *may* be swearing sometimes...but I can do it. I have friends who can't do these things, or can't do them without help. So again, this isn't so much a complaint as a statement of circumstances, and something that is part of a complex picture for those of us with RA. 

There is an enormous spectrum of degrees of pain, disability, effectiveness - or lack of - of the drugs, and so on. And that's a big part of the picture that is so misunderstood by so many people, including doctors.

Wednesday, 26 April 2017

RA life - the things that are keeping me sane.

I wrote recently about my general sense of being a bit stuck emotionally and mentally at the moment and about managing depression and the potential fallout, and have been reading a number of blog posts and articles by other people about slumps, losing mojo, self care, etc... Lene Andersen wrote about her current fatigue levels, and how that impacts on so many levels. Clearly, there's something in the water. 

In those posts of mine, I was looking particularly at a mix of personal, some illness related, and circumstantial elements that are impacting me at the moment. In thinking over it since - given that one of the reasons I wrote the post in the first place was to put it out there so I'd have to DO something about it - I've ticked a few things off my list (more on that in a minute), and have given myself an almost daily talking to to try and kickstart each day with a more positive outlook. I've also been looking closely at the things that ARE working for me, because sometimes it's all too easy to get caught up in the negatives, and that's a nasty trap. 

The talking to is having mixed results... One of the things that's getting to me is how stuck we are with the house since the move. Any new place needs that settling in time while you work out where to put things, and what you might need to add to make it work. We got some things done - Rumi proofed the back fence so the little monkey couldn't keep escaping; got Dragon Dad's desk set up in the spare room so he had a place to work; bought and put together some industrial shelving to help solve the storage issues in the kitchen (hardware store chic!) and bought and assembled a skinny cupboard to stick in the back hall for pantry storage. And then it ground to a halt, because money...or lack of. There are no built in wardrobes in this house. We had a pair of IKEA ones that work in the spare room and give Dragon Dad some clothes storage. And two chests of drawers in our room that double as bedside tables for our smalls and socks and so on. But I'm still, eight months in, living out of suitcases and boxes - and have a most impressive chair/floordrobe that would do any teenager proud! It's frustrating, and a bit depressing. So, on the list of things still to do is find the energy to go and do a major sort so I can pack away all the summer stuff into suitcases that can be neatly parked in a corner, and reduce the items that I am using so I can make neat folded piles of them. We also - and Dragon Dad actually said this... - need another bookcase because I've still not sorted and properly shelved the books because there isn't enough space - that's around $100, I think...might be doable soonish, I hope. 

In the meantime though, I have done two tai chi classes now, and am paid up and committed to continuing.  My mother would laugh at me - all those years of her telling me I should do it, and me not doing it because she'd told me I should - perverse... I like it. I really do. I crash afterwards - fell asleep on the couch in front of the TV on Tuesday evening after dinner. But the joy of falling asleep because I'm tired because I did something physical - a 'normal' activity that used energy - THAT was wonderful. I'm not finding it too physically difficult - apart from my feet. In the two classes so far, I've tried two different pairs of shoes - we're on bare board floors, so going without shoes altogether can't happen. I have a third pair to try next week...fingers crossed. Otherwise, as Dragon Dad said, I might just have to live with the fact that they're going to hurt. I hunted online yesterday and found the 'Beijing 12' that we started learning this week - because, try as I might, I could not remember the first movement that we were taught. Damned brain fog and inherent lack of remembering physical routines...

Getting past that emotional block about starting something new with strangers was a good feeling too. Reminded me that, actually, I CAN do it. A salutary reminder to get over myself!

Getting back on track with the blog. This my second post this week.  I'll try and keep to that if I can. It does me good to write. To get the stuff in my head OUT of my head! The trick is finding a point of focus so I don't just ramble on, because no one wants to read that. All the stuff I've read about blogging and being a 'successful' blogger make the same point - that the really important thing is regular posts. It doesn't matter whether they're weekly or daily, or something in between, but they need to be regular. While I'm perfectly capable of writing to a brief - including deadlines - one of the reasons I started blogging was to give myself an avenue to write where there weren't structures like that that create pressure. However, to make the blog WORK, there do need to be some, so I'll try...I may not succeed, but I will try.

I've also done some research, looking for new places to pitch work - it's a jungle out there, folks. I have some paid work that's semi regular, but I need - financially as well as creatively - to find other work to do, other places to publish. So I write stuff and send it out - mostly into a black hole. Typically, I've done this in bursts, having a flurry of busy-ness, and sending things, and getting all worked up in anticipation that perhaps this time I'll have cracked it - only to come crashing down as the persistent lack of responses demonstrate that, yet again, there are no takers. So, I'm looking at diversifying that approach a bit with a more balanced mix of things I'm working on, with a different spread of potential destinations. At least the writing itself will be a bit more mixed, and interesting. 

Fat Mum Slim's Photo a Day challenge. I wrote about this when I first planned to start doing it. It's nearly the end of April, which makes almost four months of posting a photo every day in the Facebook group, and on the Dragon Mother Facebook page. In that post, I wrote about some of the reasons that decided me on committing to doing it, and by and large, they're playing out as I thought they would. As the daily drawing practice did (which I've not managed to pick up again so far), it makes me look at the world around me with much more attention. 

There are specific daily prompts for the photos, so there's a certain amount of daily discipline that comes with getting my head around how I'll approach that - sometimes, it feels really obvious but other days it can be a real challenge - and surprisingly difficult! Some of my results have prompted Dragon Dad to tell me that I've got some potentially serious photographic talent - which was hugely gratifying! And also that at some point when money allows, we must find me a good digital SLR camera. At present, it's all being done with the phone on my iPhone - although, I'm far from alone because there are lots of others in the group in the same position. 

I've also been 'fabbed' three times now - for each prompt, the moderators select a number of photographs that they particularly liked and post a collage of them as the pinned post for the next twenty four hours. I've been ridiculously chuffed each time - again, validation, which is nice. Most importantly, I'm making new friends online. I may never meet many of them in person, but I have to say, it's an extraordinarily positive and supportive group of people, and there's lots of friendly chat on comment threads on the photos when people come to comment on each others' shots. And, the thing that prompted this particular post, there are more than a few people for whom this particular activity is enabling them to have something that they're consistently focused on which is giving their lives structure, for whatever reason - and there's a conversation happening on a particular photo today to that effect. So, to finish on a positive note, I'll upload a few of my favourite photos so far. Those of you who follow the Facebook page may have seen them already, or not, depending on how your newsfeed serves up things! For those who WANT to see them regularly and don't follow the FB page - I invite you to do find it and follow. 

Flat lay
Fave part of my day - fabbed
Off centre
Opposites - fabbed

Sunday, 23 April 2017

Fund raising and awareness of RA and other autoimmune diseases - or the lack of...

I've been stopped twice in the last week, at the same supermarket, by people fundraising for cancer research. Now, before anyone gets up in arms, I totally get the need for cancer awareness and fund raising, and am only too thankful for the good work that's been done in the field to improve diagnosis and treatment protocols. 

BUT...and it's a big, daily but, for me... I have an incurable, chronic disease. It's unlikely to kill me, although, severe RA and its co-morbidities and complications can cause death, and has. Ask yourself though, did you know that? Readers of this blog who have RA or another autoimmune (AI) disease probably do, and perhaps some of their friends and family members. However, it's highly unlikely that the average person on the street does. Because, RA is still, in the minds of many, 'just' arthritis. Like their granny has... the odd sore joint that slows them down a bit, and hurts when the weather gets cold. Not to minimise the potential devastation of osteoarthritis (OA), either, but RA is a systemic disease - unlike OA. As is Lupus, Sjogren's Syndrome, Psoriatic Arthritis, Spondylising Ankylosis, Type 1 Diabetes, and many, many more. And not a single one of them can be cured. 

Before writing more, I'd just like to say that this is a really hard post to write. I don't want to come over all whiney, and 'poor me' - that's not the aim of the exercise at all. I don't want it to sound like there's some kind of competition between cancer and autoimmune diseases, because there's not. I also don't want to offend anyone - that's the last thing I want to do. I just want people to stop for a moment and consider what I'm saying, and try to understand where I'm coming from, because that's what real awareness is about. 

So where the hell are the tables with bright faced young things raising funds for autoimmune diseases? Seriously...where? 

There aren't any... 

I don't donate to cancer research. Not because I don't think it's worthy of my money. But because thousands and thousands of people already do, and there are more foundations for different types of cancer than I can poke a stick at. So many labs devoted to cancer research here and all over the world, doing excellent work and making important breakthroughs regularly. Which is marvelous. And necessary. 

When it comes to autoimmune diseases though, that's just not the case. I honestly don't know why that is. It can't be based on the numbers. The Australian Institute of Health and Welfare report from 2014-2015 reported an estimated 407,900 people in Australia have Rheumatoid Arthritis alone. That's - if my maths are correct - something around 1.76% of our current population. That's NOT a small number.And goodness only know what the current numbers might be.

Is it some sort of twisted kind of 'glamour'? In a world that is being fed by dramatic press headlines, those depicting celebrities fighting cancer appear to be increasingly frequent. And there is that concept of the 'brave fight', particularly when, tragically, someone dies...losing that brave fight. 

More celebrities have been 'coming out' about their autoimmune diseases. At the same time, their experience can look very different - and I've seen comments on forums where people make a point of making that an issue in, those people, regardless of the diagnosis, have more means than the average individual to make life easier despite the diagnosis. The same could be said for celebrities with cancer, I guess. But ultimately, we're still all people, and no fame and/or fortune can change the fact that being sick - whether it's cancer or an AI disease just plain sucks. 

I wrote about this when my dear friend Lizzie died from ovarian cancer. It's her birthday today, along with No.1 son... Lizzie had also been diagnosed with RA some time before the cancer diagnosis. Ironically, I have seen in RA circles online people who have RA and are struggling with the kinds of lack of support and understanding that are common for many making the statement that they 'wish they had cancer' - on the basis that cancer HAS a level of awareness and understanding that autoimmune diseases don't have. There's no way that Lizzie would have subscribed to that particular idea. She was all too aware of the different playing field offered by her cancer diagnoses. Tragically, as is the case for all too many of those diagnosed with ovarian cancer, the diagnosis came far too late to offer her reasonable odds of survival. So, I've never wished I could have cancer instead of RA, just to have more awareness. 

Awareness and fundraising are important though. Incredibly important. Research takes time, and requires money to fund staff and facilities so that it can be done, and done thoroughly. I did a Google search for current research specifically being done for RA in Australia, and found two main places. TWO. Two sites of research for a disease that close to half a million people in this country have. One is the Garvan Institute in Sydney, and the other is the University of Queensland. The latter is working on what they're calling a 'vaccine' for RA. I'm not entirely sure how you vaccinate for an AI disease, to be honest. From what I've read though, they've tackled the research along the lines that I've always thought seemed most logical - figuring out how to turn OFF an autoimmune system that has got stuck on overdrive...because by doing that, effectively, you stop the disease process entirely. Current treatments only slow that process down by inhibiting the overactivity. The UQ model aims at flicking an off switch to stop it.

Garvan, on the other hand, are looking at a treatment that sounds as if it may work similarly to current biologic drugs, but it is targeting cells in the inflammatory process rather than the autoimmune process, in a way that can be effective earlier in the immune response that's attacking the patient's own cells. It could have a similar effect to the UQ model in shutting down the disease activity altogether. 

What isn't clear with either project is whether the proposed treatments are something that the patient then needs to be on long term to maintain the status quo - which, to my way of thinking, puts them into a treatment classification rather than a cure. I don't know if - should they work - you'd then have to remain on that treatment, because coming off it again would allow the disease to start up again.

Overseas, there is work being done with an electronic implant that stimulates the vagus nerve - a project that started when a neurologist (I think - I can't find the original article I read about this) started to wonder if it would be possible to interfere with the inflammatory system via the nervous system. The vagus nerve controls TNF production (tumor necrosis factor, a chemical in the system that is a primary component in the inflammatory response - the first of the biologic drugs on the market, which are still being used, are TNF blockers) so the implanted device sends a signal to the vagus nerve which stimulates a response that interferes with that process - effectively reversing the disease. Early human trials have had some promising results, although they've been relatively small samples. At this stage, the consensus appears to be that it's potentially a treatment that can be offered when a patient has failed to respond adequately to current drug protocols, as it's invasive, and once implanted, rules out future MRI scans (a major diagnostic and monitoring tool), due to it being metal. Again, like the two previous projects, my question is, does that mean that once implanted, the device has to stay put for the rest of the patient's life? Is the 'cure' conditional on the ongoing presence of the device?
Receiving the infusion of the biologic drug that's keeping my RA controlled.
While these projects are all encouraging and indicate to me some logical new approaches in research for RA, given the numbers of people who are affected by the disease, they're disproportionately small. And awareness of the disease and its affects on the daily lives of patients certainly isn't on the increase. On the television last night, the Ride for a Cure was being advertised. It's an annual long distance mass cycling event that people can do to raise money for cancer research. A friend of mine did a similar one last year, riding from Canberra to Sydney over three days. Dragon Dad, being a cyclist, voiced the idea that he'd like to do it one day. He did do a two day ride that was to raise funds for cancer research a few years ago - 100kms each day. I forget how much he raised, but he had to raise a certain amount before he'd even be eligible to ride. When No.1 Son did the Noosa Triathlon last year, he was racing to raise funds for cancer too. 

Then, last year, I stumbled across a cycling event for RA that popped up on Facebook because of the algorithms that govern my newsfeed. I clicked on the page, and there it was - a ride from Canberra to Adelaide to raise funds for RA...only it was nearly over, and I'd heard absolutely nothing about it via any of my channels prior to the event. When I hunted around online, I found a reference to it on the Arthritis Australia website two days before it was due to start...but no active promotion, which I thought was appalling. The event itself was instigated by a cyclist whose partner has RA. In the conversation I had via Messenger on FB, they said it was a one off. MAYBE they'd repeat it, but that wasn't a given. Dragon Dad was really disappointed - he'd have gone and done the ride with them had he known. He'd have promoted it like crazy too, because that's how he rolls. He'd certainly have contacted all the television stations and newspapers to try and get coverage - as there is for the cancer ride. I don't know how much money the cyclists raised - there was no follow up on their FB page or the Arthritis Australia site. Given that that's our mainstream agency in this country, that's just not good enough. 

Both of the times I was accosted at the supermarket last week, I stopped and said that no, I wouldn't be donating, and I told the girls why. The first time, with two girls on the stall, one of them introduced herself and asked my name, then told me she totally understood, as her mother had recently been diagnosed with MS, which has now been classified as an AI disease. She wished me well. The other girl with her tuned out and looked as if she was trying to be anywhere else but there at that moment. Similarly, the second time - one girl on her own - she looked uncomfortable, and clearly didn't know what to say, so said nothing.

Somehow, this status quo has to change. These diseases, collectively, affect millions of people in Australia. There needs to be better research funding, because if cures CAN be found, many of those people will be able to re-enter society healthy and capable of living fuller lives than many currently manage. It will mean many will be able to go back to work - something so many of us can no longer do. It will mean fewer people are living with chronic pain. It will mean so much for so many... So, next time you have an opportunity to donate to medical research, think about the diseases that don't receive so much funding, and maybe pick one of those. 

Saturday, 8 April 2017

Rheumatoid Arthritis - on NOT being a hermit...

I'm a fairly gregarious individual. I like spending time with people, going places, doing things... I belong to the extrovert end of the social scale - not at the extreme end, but I'm definitely not an introvert. Having said that, I am shy. I've always found it difficult to launch into new activities where I don't know anyone - walking into a new situation knowing no one is something I find very challenging. I don't always find it easy to fit myself in socially. Growing up, we mostly associated with family, so there weren't 'events', as such, where I learned how to make small talk and do the social 'thing'... 

One of the more insidious things with chronic illnesses is that it can get very easy to have your world shrink. Pre-2013, I was working, getting together with friends, going to gallery openings (I was doing a reasonable amount of exhibition reviewing), swimming regularly, going to different events as opportunities arose, and so on. A fairly regular, busy, contemporary life. 

Now, a visit to the cinema is a highlight, and the most social I'm being is the odd coffee get together with a friend. We've been going to shul semi-regularly, but haven't really got very involved at the synagogue apart from attending those services. Occasionally, we head to friends down the Mornington Peninsular for a drink or a meal. Mostly, if we go out, we're prowling different areas of Melbourne and finding what might well become familiar haunts - just the two of us. I've found Tai Chi Australia, and have been in touch. The most logical place for me to go to classes is about a 15 minute drive away and the next beginner class starts on the 18th of this month. 

Here's the thing though... I'm dreading getting to that first class - finding the school where it's being held, finding parking, finding the room, and then walking in not knowing anyone. I want to ask Dragon Dad to come, only he doesn't want to do Tai Chi, and I'm aware of just how pathetic that would make me sound. He's asked me a few times why I've not gone to services at the shul on my own, when he's not been able to go... A part of the reason is that the Friday services are at the end of the day when I'm most tired, so I dread the drive back after I've sat for an hour at the end of the day and am really stiff and sore - and that's what I've told him. But also, it's the whole going by myself thing, because I really don't know many people at the shul, and those I know are passing acquaintances, not actual friends. I've still not emailed the cantor about the choirs, which would alleviate that particular situation since once I'm involved, there'll be a core group of people within the community that I will get to know, and I'll have a 'place'... But it's still that initial step.

Why is this...? 

Part of my reticence is our current extremely tight financial situation. There are a number of things I've found that I could do - which would both throw me into getting to know people, as well as getting me out doing things I enjoy, but they cost. And we really can't afford extra expenses at the moment. Tai Chi fits into overall health care, so it's a priority that can be sorted out financially, along with other things that Dragon Dad's doing for his health and fitness. Some of the others, while no doubt good for my mental health don't feel that straightforward.

Another critical element is that new people mean explanations. When it's just Dragon Dad, or friends I have here already that go back some years, I don't have to explain. I can say I'm not well, and they're sympathetic, but don't need me to explain. Strangers are another thing altogether. My old friends have known me before this severe phase of the disease. They're not happy I've got so sick - for my sake. But they know who I am, what I've done, what I can do, etc. They know the whole me, not just the 'sick girl'... There was a time when I could walk into a new situation and it wasn't necessary for anyone to know. I was well enough for it not to show, and for me to rarely need accommodations to be made. If I cancelled something, it was usually for some big and immediately understandable reason - not because I was having a bad day. Because my 'bad day' now is about being too ill to manage something - too much pain, or too much fog, or too many side effects immediately post infusion, and so on. For instance, the Tai Chi class I'm looking at is on a Tuesday. So is my infusion, every fourth Tuesday... So, once every four weeks, I'll need to go to a different class on a different day, because the end of the day on infusion day is definitely not going to be an option. I'll have been sleeping most of the afternoon and I'll have the headache from hell, and a level of drug infused fatigue that's impossible to get past. I won't be capable of driving or being as physical as the class will require. And I'll have to tell them that - and make arrangements for which class I pop up in like a bad penny every four weeks...and tell the teacher of that class too. 

Little by little, all these bits and pieces of emotional baggage start to add up to the point that they can end up looking like an enormous wall of 'stuff' that just can't be scaled. But I don't think I'm alone. I suspect that this is a phenomena that many of us with chronic illnesses know and understand, even if it's not something we articulate for ourselves or anyone else. 

My rational self tells me that it's going to be FINE. That I don't need to get myself into such a state. Because when I do scale that mountain, things usually are OK. The friend I'm seeing most frequently at the moment is a new friend, in physical terms. I met her online in an international RA support group, and invited her to joint the Australian one I'm involved with. Then it turned out she lives in Melbourne so when we knew the move was really happening, I tucked that away in the back of my head for when we finally moved. I didn't do anything about that after we'd made the move though, not immediately. For one, there was that whole 'do I cross the line from online contact to face to face?' thing that's very much part of the online world vs real time. But also, it was that whole thing about taking that first step. Then I had a crisis situation that she became aware about via an online conversation, and in the end we did meet up in the next few days. Because it turns out we don't live very far away from each other, so it's REALLY easy to get together. And it's been lovely - given the context of how we met in the first place, we don't have to explain anything about illness, because we're both sick! 

So, things can work. I know this. But I've had almost three and a half years of my life steadily shrinking and it's really hard to acknowledge that I've got a part to play in that, and if I don't want to end up being completely isolated, I need to put my big girl pants on and just step up. Which is, ultimately, what this blog post is about. I'm putting it out there. Saying it out loud so I have to do something about it, because it's not hiding away in my head any more! Those of you who read this post now know I now - well, once I hit publish - feel like I'm accountable! 

Wish me luck, folks. It's time to crawl out of my shell and start making my life happen again. And if I can do it, so can you, so tell me your stories!

Wednesday, 29 March 2017

Rheumatoid Arthritis and managing depression

It's been a difficult month. The weather has been all over the place. My body's been all over the place. Dragon Dad's been all over the place - with injuries, his appendix, stress with the business... And my head has been all over the place too.

It's difficult to keep a positive focus when there's too much going on that isn't great. I see all the 'practicing gratitude posts' on social media, and to be honest, they make me feel a big up-chucky... I do get the concept, but it just doesn't do it for me. I sometimes wonder - so cynical - how much 'fake-booking' is going on when I see them. 

Years ago, after decades of living behind a protective facade resulted in something of a breakdown, I promised myself - once I'd put myself back together - that I'd not let another facade build up again. Ultimately, it was destructive. That meant figuring out how to live authentically. And I know that's another buzz-wordy sort of concept, but I can't think of a less cheesy way to put it this morning! I do use publicising odd things I plan to do as a tool to make myself actually do them - once it's out there, I have to own it and then come up with the goods type of thing. Because I'm excellent at procrastinating, and then landing hard up against deadlines in a mad tizz of self-inflicted pressure and stress. So, I guess part of me looks at those gratitude posts through that filter. And it's why I've never succumbed to the trend - apart from generally avoiding trends anyway! I can just see myself managing a couple of days of posting my three things, then hitting a trough and having to face a choice between making it up, missing it altogether, or being brutally honest and posting that my day is shite and I'm not grateful for anything! 

So, I hibernate. 

There does come a time though, when I realise the hibernation itself is becoming dysfunctional. I managed, last week, to not go out of the house at all between early Monday morning (had to fill a script) until late in the day Friday (HAD to get groceries...). Given my practice of going out for coffee, which I partly started to make sure I DO get out, I realised I was going down the rabbit hole and I'd better jolt myself out of it. 

Hibernation is fine - within reason. Sometimes, it's just all too hard, and adding the social requirement to be reasonably civilised when you interact with others - particularly strangers - it's the sensible thing to do. But it can become a trap. 

I'm not naturally introverted. I can be shy of new people and new situations. But on the whole, I like being out and about doing things, seeing things, meeting people, etc. I like getting out with Dragon Dad prowling markets, going to art galleries, the cinema, window shopping, and the like. One of my red flags is when I find myself avoiding those things. Reaching the middle of the day still in PJs. Making coffee at home or asking Dragon Dad to bring me one on his way back from errands. Not making the phone calls or sending the emails I should (there's now a long list...including the blasted dentist as of this morning, because that same back tooth that keeps breaking has lost another chunk!). Not initiating chats with friends I spot online. And so on...

My body has been crap this last month. I started to deteriorate early in last month's infusion cycle, and then in the week prior, Dragon Dad did his whole appendix drama and the extra running around combined with stress tripped a flare. It took a long time to claw my way back from that, and it was really starting to feel as if I were in for one of those months when there's just no improvement. The last couple of days have been a bit better though, and that does help my state of mind. It's frightening and confronting when there's a really big, extended flare, because then it starts to feel like I'm hitting a new low spot physically that is an indicator of further losses that could become the new normal. The reality is I probably have slid further, but until I sort out some imaging and review results along with the monthly bloods (although, they're rarely conclusive) with my rheumatologist, that's just my gut feeling. Although, with a chronic, degenerative disease, it's not way off the mark to be thinking along those lines. 

So, given a couple of better days and articulating to a friend this morning that depression is reaching out its grabby little tentacles again, it's time to push myself to NOT get pulled under. 

Consequently, that friend and I have arranged to meet up tomorrow in the real world, to have coffee and a catch up. She's also been having a bit of a rough time lately disease-wise, so there's absolutely NO requirement to put on a face, thankfully, or try to explain - she gets it. 

I sorted through yarn and patterns yesterday, and started knitting a scarf. Given that my absolutely most favourite jumper reached the stage where it's obviously old and eroding on the edges, along with a favourite cardigan, I need to look at adding warm layers to my wardrobe with the yarn and patterns I have in the stash - because that won't require any financial outlay. So, the scarf, which is a quick project, will get me back in the groove again, and ready, when it's finished, to embark on a new jumper/cardigan project.  

I will find a Tai Chi group - that will hopefully not cost too much, because there's just no money at present for extras. It could be argued that it's not an extra, except that it will cost money, and anything outside the essentials at the moment is an extra. But I need to be moving more, and that is a good choice as it'll give me the exercise, as well as getting me out and involved with some new people. I did find someone fairly close by who teaches a fusion of Tai Chi and Yoga, but she's $25 per session. When I looked into Tai Chi in Sydney, the Tai Chi association charged $95 for a ten week hopefully I can find something like that here. To that end, I've left some money from my last pay cheque in my account in case I can find an affordable group.

I will also email the cantor at our shul - finally. The shul has several choirs, and one of the things that was always on the drawing board with the move here was to get back to regular shul going, and get involved musically. I was a professional chorister at the shul in Sydney where we used to go. I've not been singing for some time now, and it's time I got back to it. I also need to sort out some regular drawing. The Tai Chi has priority financially, so the life drawing group I've found will have to wait but there's no reason at all not to be drawing at home and trying to find a market for the work - which will mean, hopefully, more income, and therefore more options for activities. 

So, have you seen what I've done here? Put a list of goals to meet out in the public domain as incentive to get them done! So, feel free to call me on any of them, if I don't report back soon to say I've got at least some of them in train... 

Meantime, the one thing I have managed to keep going is Fat Mum Slim's Photo A Day challenge, which I'm participating in on Facebook. It's great fun, it is social (I've added a new FB friend as of last night), and I'm learning lots. I also definitely now want a DSLR camera...!! With lots of different lenses. Although, I continue to be amazed and surprised by what's possible to achieve with an iPhone camera. I've just made up the collage of all my images from March (because I've taken tomorrow's photo already, and I needed something fun to do this get me past the black dog) and here it is for your enjoyment. I got fabbed - chosen as one of the images of the day - for the photo of my morning tea mug and novel (in the top right hand corner of the collage), which was a lovely surprise and boost. And now I have a list of things to get onto. How do all of you manage creeping depression?