Healthcare system

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)

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.

I've been putting off writing an update for so long that I barely know where to begin. This will necessarily be rife with omissions... And just FYI I finally crunched the data on the healthcare experiences survey I had posted (it's now closed to new entries). Thanks so much to everyone who responded! I had some interesting results and am looking forward to sharing them soon! 

It's been a weird summer - things have been pretty apocalyptic. Plagues (bad chronic illness flares for me, plus Bruno and I both had a bad cold/flu virus a few weeks ago - fevers and snot galore), locusts (we keep getting explosions of maggots in our compost bin because of the heat, and they got into our garage), crazy weather (namely the incessant heatwave, though we've finally got a little break from that, but also the couple days of thick forest fire smoke)... It's been one thing after another.

Anyway, let's get to it.

You've got what it takes and it will take everything you've got

I have SO much to update you all on, but I'm still working through how/what to tell you... But in the meantime, I've had some more pretty awful experiences lately with doctors, and it led me to wanting to hear more from all of you about your experiences. So I put together this anonymous survey, and I really hope you'll fill it in and share it with any of your friends who are chronically ill, mentally ill, or disabled.

Thanks folks!

Update: The survey is now closed, thanks to all who responded!

I don't want to write this post, but I'm going to anyway, because yesterday led to me completely losing my shit at a medical appointment. I left uncontrollably sobbing, shaking...and not even from the extremely painful medical test I had, but from how much lack of compassion and actual caring there was around providing me the recommended treatment. 

I've been keeping most of my medical traumas private for a while now (aside from what I put in issue 2 of my zine), after being shamed and judged by several people for talking about my health related experiences. But I'm working on overcoming the feeling that I need to keep quiet about these experiences, because I feel it's an important part of demystifying chronic illness and advocating for better understanding and care, for me and others who are sick or disabled. I don't want to let the judgment and shaming of a few people silence me, so I have to keep telling my story.

Mini Iris

It's been a really bizarre few months here, not just because of the freakishly early spring we're experiencing in Vancouver, while the rest of the country is under a snowbank. They've kind of passed in a blur. The family emergency in December and January was really stressful and made me brutally sick, but I'm finally starting to get back to closer to whatever passes for stable these days. It also led to me reconnecting with some family members I hadn't been in touch with in a long time, including one of my parents. Some positive things have come out of it all, but it's been kind of up and down and overwhelming. It's a lot to get used to right now, and I don't really want to get ahead of myself because it's too easy to assume things will keep going in one direction or another, when it's all totally unpredictable. My feelings about so much of it are totally all over the place and far from clear...and I don't even really care to work them out at the moment.

I haven't had a lot of time or energy to give to the whole thing, as I've had to yet again completely shelve everything aside from the bare necessities so I could focus on trying to get back on my feet again. I'm behind on so many things - but they have to wait. Emails being put off, my supposedly monthly newsletter that I've had a ton of signups for but haven't sent out since before the holidays, sewing projects that have been sitting in a pile untouched, the web project/business Bruno and I have been talking about and wanting to develop, even less-essential health appointments... I'm pacing myself heavily, and they all have to wait - maybe for a long time to come.

I guess the end of the year is as good a time as any for this big, nay enormous, long overdue health (and life) update - how appropriate that this is (in Drupal-speak) "node 1000", aka. the 1000th post on this site! December just had some surprises in store for us, and I got a bit sidetracked and wanted to get this one done first.

You may not have noticed but over the past couple years, even though I've continued to write posts about health and chronic illness, most of them haven't been particularly specific to what's actually been going on with me. I've written a few posts about my throat issues and adrenal fatigue, but otherwise I've been sticking to more general conversations about the ins and outs of living with chronic illness. I wish I could tell you that this was simply because of my commitment to speaking out about chronic illness, but that would be leaving out a significant portion of the truth. The truth is harder to talk about and more complex. 

My desire to keep personal details hush hush has unfortunately really cramped my ability to write about many topics that I have a deep desire to write about. Specific health issues, work plans, personal/family relationship stuff... I've been thinking long and hard about this, and have waffled back and forth several times about it, and have finally decided that it's time I just have out with it all so I can get back to really talking about all the things I want to here.

IMG_1780

Now, where to begin... Maybe a recap.

Pages

Subscribe to Healthcare system