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
Treasures
Fave part of my day - fabbed
Off centre
Macro
Street
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 itself...ie, those people, regardless of the diagnosis, have more means than the average individual to make life easier despite the diagnosis. The same could be said for celebrities with cancer, I guess. But ultimately, we're still all people, and no fame and/or fortune can change the fact that being sick - whether it's cancer or an AI disease just plain sucks. 

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 too...so 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 term...so hopefully I can find something like that here. To that end, I've left some money from my last pay cheque in my account in case I can find an affordable group.

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 morning...to get me past the black dog) and here it is for your enjoyment. I got fabbed - chosen as one of the images of the day - for the photo of my morning tea mug and novel (in the top right hand corner of the collage), which was a lovely surprise and boost. And now I have a list of things to get onto. How do all of you manage creeping depression?

Tuesday, 14 March 2017

Rheumatoid Arthritis - Infusion day plus one...

Back when I was first diagnosed, there were far fewer treatment options available - mind you, there were still many more than had been available not all that long before that! There were a few DMARDs (Disease Modifying Anti Rheumatic Drugs), but they were administered singly, whereas now, they're used in various combinations as it's been found that that's much more effective in controlling the disease. 

Move on another decade and a half, and well within the time when I wasn't seeing a rheumatologists, and the first of the biologics became available. These are now the most powerful drugs used to control RA. They're made from live human proteins, and they target specific parts of the autoimmune system in ways that interfere with disease activity - basically, they slow it down. I wrote a post about them for RABlogWeek last year which you can read HERE

I'm on Orencia. I started with weekly injections, but transferred to four weekly infusions, because I get a bigger dose that day. It has been good. It's definitely given me a significant improvement. I had my infusion yesterday, and it went well. It's hard, being needle phobic, having to have regular infusions, but the hospital where I go is nice, the staff are excellent, and they've been very understanding of my phobia and do everything they can to make sure everything goes as smoothly as possible to minimise any extra trauma.

Today, I have the headache from hell, which is a side effect I experience every time. I got it after every shot too, when I had those, so it can be argued that that's another benefit of the infusions, because now I just get it once every four weeks. It's a doozy. I feel as if I've got a massive clamp on my head, around my temples and eye sockets, and it's squeezing. Just nasty. The fatigue hits hard too - I crashed and slept for a few hours on the couch yesterday afternoon. And slept like a dead thing last night in between the times I woke up in pain. I'm still flaring - the flare that was tripped when Dragon Dad had his appendix emergency. So I went into this infusion in a bad way - pain meds upped to the max, still a lot of pain, and noticeable swelling. I'm sitting typing and am desperately trying to ignore my knees, which have skewers through them, twisting and turning, and my feet and ankles which are both burning and have awful pins and needles. So, I'm anticipating it'll be a good few days before I can expect any real improvement this time around.

I'm also starting to think that it's time to have THE conversation with the rheumatologist about whether it's time to look at changing biologics. This is a tough one. While the headache, fatigue, and sinus congestion (which I sometimes also get to varying degrees) aren't pleasant, they're doable, as far as side effects go. They could be much worse. I could be throwing up all over the place, or worse. And it is still having SOME effect. I have around two weeks in the middle of the cycle when I know I'll be doing OK. But the week leading up to the infusion can be dodgy as the beneficial effects of the drug start to wear off, and the week following can depend as much on how bad that last week was, as well as how bad the side effects are each time. So, it's highly unpredictable. 

I used to do better on this drug. There were some months I could get my pain meds down to one 50mg Tramadol SR for the day time. At the moment, I'm taking 150mg... And 200mg at night - so I'm pushing the outer limits of what can be taken. And while it helps, I'm by no means pain free. Last week, I was needing to top up with oxycodone. Add to that the deterioration in my shoulders, the now regular swelling and pain in my ankles that didn't used to be there, pins and needles in my feet - which suggest my circulation is being compromised, significantly more pain in my knees, and so on, I'm wondering whether it's the drug not being as effective, or whether it's a significant increase in disease activity.

It's a hard call. Given my ability to have extreme reactions to new medications, giving up a drug I know I can tolerate is a hard decision to make. Facing taking a new one is like facing stepping off a cliff. And then there's the issue of knowing exactly what's going on. IS it the disease getting much worse? And what does THAT mean? It's not something I let myself dwell on - because that's a pointless waste of emotional energy. But dealing with the everyday realities of a disease who's only known trajectory is that it gets worse, and having experiences that suggest that that's actually what's going on... That's really hard. And I don't know if I'm ready to face that. 

Relatively speaking, I'm still doing very well. I'm mobile, independently functional, and can do lots of things - and enjoy doing them. At the same time, I'm very aware that I don't feel very well at all most of the time at the moment. And that wasn't always the case. So something has changed. 

My next appointment with my rheumatologist is in May. And I have two more infusions before then. Anything could happen between now and then... 

Thursday, 9 March 2017

Rheumatoid Arthritis - Flat Friday

You know when you have a reasonably good day, and get some stuff done, and you're all over how FABULOUS that is? And then you wake up the next day and it's all gone totally to hell in a handcart...? Especially since, although you got lots done, you didn't actually do anything stupidly physical that would over strain anything or push beyond sensible limits.

That's been my today. On a day when I'd usually do the grocery shopping, to prepare for Shabbat. Maybe make some challah. Some egg salad. 

Instead, I hauled myself down the road to do my blood tests - infusion on Tuesday - and then sat in my local (bless them for being right there opposite the doctor's surgery, and for having such excellent coffee) for the longest time trying to find the energy and focus to get back up, and drive the car the 800 meters back home... I was obviously there longer than I thought too, because suddenly there was Dragon Dad in front of me, en route to the hardware store, stopping in to check that I was there and OK.

So, I got home, and then managed to get through writing one of three work articles. Well, almost got it finished. By then Dragon Dad had got back from the hardware store with the supplies he needed to continue with the backyard Alcatraz he's been building to keep the littlest Siamese IN the yard (after discovering yesterday morning that she's been scaling all eight feet of it to go play with the builders over the back while they build the new house there). He had to keep going with that - small Siamese was driving us nuts being confined to barracks - but needed a work document scanned at Officeworks so it could be sent to the relevant parties, and could I possibly do that? For a moment, he hesitated and said not to worry, he'd do it, but I gathered myself and told him I could. And I did. And got back, made us both sandwiches, because it was well past lunch time. Then my stomach went berserk - because I'm flaring, flaring badly, so the IBS has to kick in too... 

I sat a bit, sipped a Coke hoping to settle the nausea, did a few runs to the bathroom - GAH. 

And you know what? THIS is what I totally hate about RA. That it can poleaxe you so comprehensively. I've been out today to do two very minor errands - in the scheme of things. I've written one very basic, short article. Made a couple of sandwiches. 

And I am EXHAUSTED. And I feel like shit. And I HURT. My gut is a mess. I can't think straight. And, I've done absolutely nothing to have caused any of that...it's just what my body does, because it's sick. 

Thankfully, we were on the receiving end of a lovely gift from Dragon Dad's brother and mother - a polystyrene box full of all sorts of lovely food that just needs warming, mixing, or a quick grill. SUCH a thoughtful thing. Dragon Dad hasn't been doing as much around the place since his surgery - the fence is the first big job he's done. So all the food shopping, cooking, organising, etc, has come down to me, and I've been deteriorating physically pretty quickly. So to have a couple of meals that required NO thought or real effort is a very special gift indeed. It means I have very little to do about dinner tonight.

So, at this point, I think it's probably time to close down the computer and relegate the remaining two articles for 'some other time', take the extra pain meds I've been putting off because that WILL be the end of my brain for the day, put my feet up, and just stop.


Self care, I believe it's called! 
Poncho - best ever local cafe