Chronic illness

Last week, a documentary aired on the CBC called Sickboy. It's about these guys out east who are best friends, one of whom has cystic fibrosis, and they do a podcast of the same name. The doc and the podcast are both not about health conditions, but what life with illness is like. And they leave NOTHING unsaid - they really get into all the stuff you normally don't talk about and it is the most comforting thing I've come across in ages. I don't know how I missed out on the podcast this long, as it's been running for quite a while now, but I've been enjoying listening to old episodes and getting acquainted.

First some links, and then some thoughts.

 

 

Last week I had an MRI - it wasn't my first, but it was my first really long one. A few things caught me by surprise, so I wanted to share what they were, as well as a few tips for making long MRIs more comfortable. 

Door of MRI2 at VGH

Here in Vancouver, they've started running the MRI machines 24/7 to get wait lists down (aside: did you know Canada has one of the lowest per capita numbers of MRI machines among OECD countries?), so when I got called for my appointment, the first one I was offered was in the 2-4am slot. Yikes - the last thing my sick body needs is being up all night. I opted to compromise and wait an extra two weeks to get a slightly less arduous time slot, resulting in my approximately 80 minute scan being scheduled for 11:15pm-12:35am, with an arrival time of 10:45pm. Because I've developed a pretty hefty case of dysautonomia, which kicks in like a ton of bricks around 10pm every night, I anticipated struggling a bit while I had to be vertical between leaving our home and laying down on the MRI bed.

This was the mural on the ceiling of a clinic I went to a couple weeks ago. Check out the gnarly scene with someone getting their leg amputated! // In other news, please forgive any typos or incoherence - writing has become more physically and mentally difficult for me, so I'm trying to just let myself off the hook rather than letting perfectionism stop me!

Medical ceiling mural

week and a half ago, when I put up my first blog post in ages, talking about getting back out there in the (virtual) world, I had no idea that I was about to have a potentially life altering breakthrough with my medical care situation. I'd essentially stopped talking about the frustrations of trying to get better healthcare publicly because it just felt so utterly futile. The lack of progress had consistently resulted in people - some well meaning, some not - making their own judgments (accusations?) about my illness and how I should be handling it. I get a lot of positive things out of putting my writing in the public eye, and being honest and vulnerable, but I also open myself up to the negative side of telling my story to both friends and strangers.

Ariane sitting at window

Here's a truthbomb for you: I'm not going to get better.

Before you jump in with a barrage of platitudes, please just check your healthy privilege. This isn't about the "what-ifs" and the "maybe somedays". This is about reality, this is about my reality. And if I sound angry, it's because I am angry, and I bloody should be.

This is about looking at what has happened so far, and predicting what will happen in the coming years based on reality. Every month I've gotten sicker. Since five years ago, when I was still able (albeit, with difficulty) to work 30 hours a week, keep myself fed, and keep my home respectably in order all on my own, things have gone so far downhill I can't even see where I started anymore. I can't do any of that now. I can't work. I can't take care of myself or my home without help. I'm no longer financially independent. I can't go most places on my own, and I can't go anywhere without a mobility aid. I can't travel (the two small attempts have been miserable failures). And I've lost a significant chunk of my prime career building, not to mention childbearing years, to chronic illness that has continued to go un(der)-diagnosed. Yes, I cope. I try and make the most of things. But the reality is crushing.

There are SO many things going on that I have written numerous blog posts in my head about, but my hand pain continues unabated (I've been having trouble getting on the medication that is supposed to help, a story for later...) so I still can't type very much. Arg! I've decided to try and post shorter than usual posts a bit more often, so that I can at least get things down on paper so to speak. First up: a (likely final) update on the LPR. (There are 3 other parts to this story: 123.)

This all started roughly 8 years ago, and began with voice problems and a chronic cough (of the choking/sputtering till you want to vomit variety) that cropped up after a bad bout of bronchitis (pneumonia?) that I had for the better part of a year around 2008. It was pretty mysterious in the beginning, and I thought surely it would go away, but it's only gotten worse. No treatments have really worked, and I continue to have major issues with LPR and my voice (I can only talk for 30-60 minutes before my throat gets sore and hoarse and I have to stop or else I start getting coughing fits and losing my voice). (Note: In case you're not an LPR sufferer and are confused, LPR is a type of reflux that doesn't give you heartburn, but rather throat, esophagus, and vocal issues.)

As anyone who has this condition will tell you, LPR and specifically the vocal problems it causes have a significant impact on my life - apparently the quality of life impact is even medically documented. It severely limits my ability to communicate, and it also means I can't use voice dictation software regularly to compensate for the joint pain in my hands restricting my ability to type. It deepens my social isolation, intertwining with my being housebound a lot of the time, since I can't talk on the phone or Skype anyone for more than about 30 mins (talking in person requires less projecting so I can often do bit more if it's somewhere quiet), and even if someone wants to come over and visit, one-on-one visits where I have to talk a lot lead to me getting a really sore, hoarse throat long before a typical visit would be done. Often, we just have to watch Netflix so there's not as much talking, unless there are other people to take the conversational burden off me. As someone who LOVES talking and time with people (and writing!), it flat out sucks. Obviously enough, it also affects the amount of work I can do on Textillia, which is already frustratingly small to me.

I'm sitting at home, while Bruno is out at a concert, trying to use voice dictation to write this post. I've been meaning to write this for a while, to update on what I posted a couple, or make that four months ago, but I've been having a bad arthritis flare, so I have been putting it off since typing feels like hot daggers in my finger joints. Voice dictation is a last resort - it doesn't work great, and since I still also have problems with my voice, it's just wearing out a different body part. Communicating is hard! I momentarily thought about doing a video blog, but I have one friend who is deaf and occasionally reads my posts, and I know I wouldn't be able to transcribe the video myself, so it just doesn't feel like a good option. We'll see how this goes, thanks in advance for extra typo/punctuation forgiveness!

I was glad to have this past week off from medical stuff, as I've been having a marathon of doctors appointments these last few weeks. This week is another doozy (including an early morning MRI with IV contrast - fun, fun), but I'm hoping things will calm down after that. After all of this slogging, I'm finally coming to the point where I've exhausted most of the options and routes towards figuring out why I've gotten so sick. But even though I was told over and over again that there was nothing to find, and that I was just stressed and not coping well with having IBS and chronic fatigue syndrome, my persistence has paid off. My diagnoses may not be the most concrete or common, but I finally do have some real answers.

I've been working up the nerve to post about this, so here goes. Two weeks ago, a little blue friend came into my life, and suddenly I am no longer trapped at home. I knew logically and had even been saying out loud, "I've been mostly housebound for the last couple years", but I didn't even REALLY understand it until I started going out again two weeks ago. As soon as I got what I'm calling my "wheelie" (rolls of the tongue better than "combination rollator and transport chair"), I pushed myself to jump right into the outside world again. It isn't exactly easy, but it's now actually possible to go out without major concerns of literally keeling over on the sidewalk, and it has been nothing short of amazing. Grocery store trip = exciting!

What can I tell you - I know by now it seems like this should all be figured out, but life isn't a movie, and I've only gotten sicker and ridden round and round on the healthcare rollercoaster... I've procrastinated posting an update because of that and also because my hand/finger joint pain has been severely restricting my ability to type. It hurts like crazy all the time and only gets worse the more I type, which has been really difficult for me to deal with since I still have throat/vocal problems, meaning both means of communicating are restricted. I really like talking and writing, so it sucks!

I've tried to keep distracted and focused on the future by working a little on Textillia (tldr; Bruno and I are trying to build the Ravelry of sewing) when I have a bit of energy and my arthritis isn't too out of control. But really, the last many months have continued to be a blur, and I've mostly been in survival mode, trying to avoid days like this one about a month ago where I got sent to the hospital for heart attack symptoms... The concern that was just a hypothetical last summer - that I'd eventually start having more severe problems if I didn't get proper help soon - has become a reality. I've started having cardiac issues, no doubt thanks to the ongoing malnutrition and stress on my body, plus some combo of inflammation and likely autoimmune disease...

But let me back-track and recap since it's been a long time since I've written a proper update...

Over the last couple months I've had two really wonderful opportunities to participate in some advocacy projects for chronic illness and disability. One is a written/photographed interview for As We Are, and the other an audio interview for In Sickness + In health. I wanted to document them here for posterity, and to share both of these amazing projects. They go beyond looking at the illness itself, and dig deep into what it's like to live with chronic illness and disability in a world that often wants to sweep people like me under the rug.

As We Are

Ariane in purple dressBack in September a mutual friend put me in touch with an amazing young woman, Zoya Jiwa who has started a project called As We Are: style strategies to navigate health conditions. Zoya is a university student who has been living with chronic illness since she was a teenager, and started this project as a way to talk about how style and fashion can be supportive tools when living with disability, and chronic and/or mental illness. She's also been kicking major advocacy butt - she just did a TEDx talk at my alma mater, Simon Fraser University, won the university's Terry Fox award for community engagement, and was named one of this year's Fellows for both RADIUS and The Next Big Thing Foundation! You can tell she's a passionate advocate for both herself and the larger chronic illness community.

(Photo by Zoya Jiwa)

This is a post I've been meaning to write for so long, and putting off until I could fully do it justice, but I'm realizing that maybe it's better if I just actually publish it rather than keep waiting until it's perfect. I don't have the best cognitive powers today since I'm not feeling well, but as I head into a week I know will be very physically and emotionally challenging, this is at the front of my mind and I wanted to get it out there. 

This is very much written about hetero/cis couples and might not fit with the dynamic in relationships that don't fit that label. Or maybe they might. I'm writing about my own experience and some that I've observed, and will be using that language, but I would love to hear from people who have stories that do or don't fit with that in comments!

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