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!

A 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.

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: 1, 2, 3.)

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'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!

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

Back 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)