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!

16 comments:

  1. I hope things improve soon or at least don't get worse.Take care.

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  2. Dragon Mom, we miss you, but we understand. I can understand and wish you the best. As a regular reader, know we adore your writing. If I can help let me know and if not know Sheryl and I are sending the best energy.

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    1. Rick, you're a treasure - and understand better than many about where I'm coming from with this post, I'm guessing... Hopefully, having spat this post out finally, I"ll have broken the block and will be back more regularly. Many thanks, my friend, and I do hope all is well with you and yours. xx

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  3. Dear Kaz, thank you for having the immense courage to "spill your guts" about your honest emotions & grief over your devastating illness. I think this blog is going to help a lot of people be able to talk about their pain, emotional & physical. I hope sharing this will ease the pressure & isolation a bit. It was a wise choice to talk about this as it's a tiny bit easier to be objective about your illness once the ugly truth is out there. You are a gifted artist, cook, blogger, Mum & friend. It's a privilege to know you.

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    1. Thank you so very much, Sally! I know I need to talk about it more to work through where I'm at, I've just been feeling very stuck, and not wanting to look it in the face. I still don't really, but I know I have to. As I said to Rick, above, in response to his comment, hopefully now I've manage to spit this post out it'll get easier to write more. Again, thank you so much for your lovely words and support. xxx

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  5. New to RA and dealing as best as possible. I really enjoyed and related to your writing. Your photo is amazing also. Be well. 🇨🇦

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    1. I'm sorry to hear that you've been diagnosed with RA, Ashleigh! But glad that my post struck a chord. Dealing as best as possible is all most of us can do from day to day, so hang in there and be as well as you can be! Thanks heaps for the photo love - it was a spectacular morning - so I was out in the back yard in PJs, before meds, before TEA!!!! It was that good out there - had to get the shot! LOL!

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  6. I too came to the realization that I was never going to get better. That RA is relentless and that the methotrexate that I take causes me to live my life like I have flu EVERYDAY! I take long acting opioids and pop dilaudid like candy just to get thru my morning. Then I sleep every afternoon until my husband gets home from work when I try to act "normal " and cheerful about my useless day. I'm sorry that you have to go thru this and that pain and medication fills so much of our lives. Thanks for sharing. It makes me realize I'm not alone. ������

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    1. Hi Jane! You're SO not alone!! A big part of severe RA is the isolation that accompanies it - it's SO much harder to be out and about among people when the pain is bad and the side effects from the drugs are so debilitating.
      It's tough though, coming to grips with the fact that the damned thing is NEVER going away. That takes guts. I've a way to go yet.

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  7. You find the perfect words to articulate the horridness of what chronic pain and illness can be. As you know- I need to be hammered over the head with the permanence of it. Only then can I get out of my own way and go forward with what is left while I still have it. I've been busy wavering from "ignore and it might go away"to "well I'm not one of those chronic illness types-surely this is just a blip and I'll get my own life back any day now" also "well if I just fix ___ then I'll be fine." I have made concessions. Ski marathons, ski Patrol, surf lifesaving, running, boot camp,spin classes are all left behind in my pre PsA life. Now I have to make sensible plans of work, travel, even house cleaning. Use my energy wisely and most of all, enjoyably!
    Thank you for this little hammer over the head of rationality. I'll get there. Me and PsA will eventually find some common ground to exist peacefully and with good humour. I'm not giving in. Not at all. Just trying to make a smooth entry into new beginnings. And new friends I never would have met! And really good coffee!

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    1. Definitely really good coffee - that makes ALL the difference on a bad day!!! I am concerned, however, that you found this rational - maybe you need some more coffee?????? LOL!

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  8. My dearest friend from afar, this is one of the first Dragon Mother posts I've read and it makes my heart swell with tears to read of your struggles with the all too powerful and ever so horrific MR. RA and I wish I had been in better contact as a good friend should. I too am struggling with MR. RA & Co. as I'm just diagnosed with a spinal compression fracture right in the middle of my spine and the pain is beyond words...and the current situation with the opioid crisis is leaving me highly under treated and in agony beyond words; a fight for the weakened on account of the strong abusers...simply a disgrace! But that's not the focus here! More importantly is that you have taken another stance to step ahead of Mr.RA and I applaud you my friend! No matter how small the steps we take toward keeping ahead of this ghastly beast of a disease, they are steps of empowerment to maintain claim of ourselves! Remember my dearest friend from afar, "I have RA, RA does NOT have me!"
    Xxx

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    1. Hi, you!!! I wish you weren't so far away, cos then on the good days, we could hang out and catch up on all those conversations we haven't been having. I'm SO very sorry to hear there are yet more issues for you to have to deal with physically. And I'd really like to get in among all the ignorant idiots who are creating the spiral of nonsense about pain meds - because it's people like you and I who are most likely to suffer. Thankfully, it hasn't reached the point here that it's got to in the US - and I'm very much hoping it won't.
      It's SO good to hear from you, and thank you so much for making time to stop by TODM to comment on my post. It took me far too long to get myself together enough to spit it out, and I will keep writing now... I'll try and write you too - we need to get back to dropping each other semi regular notes! Take as good care of yourself as you can - much love to you and the rest of the crew. xxxx

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