• 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...

  • Hi everyone! I've been super quiet on here lately and I've been meaning to tell you why:

    A) I'm still sick as hell. I'm actually working on getting comfortable with the word disabled and the reality of the situation, since my doctors have essentially given up on me and told me this isn't getting better. Of course, I'm still going to continue advocating for myself and trying to get at least somewhat better, but I am also focusing more on how to have a fulfilling day to day life despite this reality, which brings me to...

    B) Bruno and I built a website, it's called Textillia! We've been chipping away at it as time and energy allowed for over a year and finally launched it in mid-November - a super early Beta launch - lots yet to do but we wanted to let people start using it! For anyone who knits, the easy explanation is that it's a sewing site like Ravelry... Or maybe more accurately like what Ravelry was 8 years ago when it started out! Textillia is still a fresh-baked little website, but we have big plans for it!

    Textillia homepage

  • 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 weekend, I saw this video on Facebook, poking some fun at how uneducated many Canadians are on basics of politics and the upcoming election on October 19th. Pretty funny - that is, if you do know about these topics. Haha, ignorance! Or is it...? Friends, mocking doesn't actually solve the problem of lack of understanding of the political system - because it's not really that funny when you think about it. Someone who doesn't know the basics about the parties and what they stand for may either A) vote for a party without understanding what they stand for, or B) not vote. Making fun of people who aren't into politics sure isn't going to help the situation, what might is if those of us who are can take a little time to try and help shed some light on the topic!

    I've been following politics for most of my life, and took one politics class in university. There are way more knowledgeable people out there than me, but I feel lucky that I have a relatively good grasp on what's going on. And I actually enjoy learning about it! But I can only imagine that if I had ignored politics all this time, it would be horribly overwhelming to suddenly try to make sense of it all, and make an important decision - who to vote for! We have some terrible voting rates in this country, so what better way to encourage voting than trying to help those who are curious get a quick idea of what's going on? (Hint: it's not making fun of them.)

  • 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!

  • Hi friends, long time no write!

    Let's face it, I'm woefully behind on blog posts. This is for two reasons: 1) my hands are killing me thanks to some kind of mystery arthritis that none of my doctors are too concerned about, despite its significantly affecting my ability to type, cut food, etc., funtimes always. And 2) I have such a backlog of posts going I barely know where to begin! The first I can't seem to do much about right now, but the second I can - so let's get to it!

    Firstly, that 4th post in my "A calmer mind" series (that is so long ago you've all forgotten about it by now), well...that isn't going to happen. Moving on! Secondly, it's long past time I pull together the results of healthcare experiences survey. That's what I'm gonna do right now so I can share it with you, and move on to hopefully posting some more frequent but shorter (and thus hand-friendly!) blog posts again. 

    Thank you so much to everyone who completed the survey. I was amazed at the response it got, and was surprised by some of the answers and the ways they did and didn't match up with my own experiences. Please note the responses were completely anonymous and did not contain any identifying information (such as names, email, etc.), though I have my suspicions about a couple of them being friends of mine I did not ask/confirm whether they were. I also did not ask for people to submit info about their specific health conditions, as I wanted to focus more on their healthcare/practitioner experiences than their specific diagnoses.

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