Life with chronic illness

Update March 2015: Strange twist... I finally saw my (old) immunologist who I trust very much, and without getting into all the details, it turns out that the "allergist" who did the test that led to my supposedly being glycerin sensitive wasn't actually a certified allergist at all. The test that was done was not standard and the reaction was simple skin irritation (not an allergic response). After about 10 months of avoidance, I've started using glycerin-containing products again with no problems.

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Delving into the waaaaaay obscure health topics here folks, this probably won't interest most of you. But some of my most obscure and specific health posts are the most viewed ones on here by a long shot, so I know that people are looking for this info. I wished so much that I had access to a post like this, so I spent some time writing it up for whoever is next to be in this sticky situation.

A while back, I attempted to get some allergy testing done, and came out of it not even having had the tests done, and instead labeled with a glycerin sensitivity. I'm going to save all the sordid details of this, maybe for some other time (I still have to go through some further investigations to figure out what's going on), but the long and short of it is that since then I've had to remove glycerin containing products from my life as much as possible. (The only things I haven't found replacements for and am still using are quite ironically my antihistamine pills, Reactine, and cortisone cream. There is a "Cortate ointment" petroleum based alternative, but I don't find it works as well.)

You would not believe how many personal care products, soaps, and medications have glycerin in them, it's RIDICULOUS. Not exagerating, probably 99% or more. It's safe to say I have been slathering myself in copious amounts of glycerin for most of my life - which is hopefully a good sign that my sensitivity isn't terribly severe, but it may have been impacting the overall burden on my body. It's extremely hard to find products that don't have it, and it's not only inconvenient but incredibly expensive, suddenly having to replace everything you own with more obscure and pricier products.

Limits. We don't like them. We don't want to be told by anyone - not even ourselves - what we can or can't do. That each of us will eventually hit a wall at some point.

While working on my previous post on illness and beauty/body image, I had several conversations with different friends, and one of the topics that people kept really honing in on was denial. An email exchange with a friend turned into a long rant on my part, and I thought it was worth sharing, so I've fleshed it out into this post - I feel like it's a very important awareness to develop.

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~ Let your loss set you free Heartgirl by Ariane K ~

Health is not binary. People who are chronically and/or mentally ill may indeed be "sick" (a term with a huge amount of complexity in its own right), but we are not on any given day A) sick or B) not sick. These conditions can be lifelong or last many years, going through flares and remissions. But we are not just "sick", we are people with hobbies, partners, friends, and if possible, jobs. Our illness(es) may feel all encompassing at times, but they are not us. They are only a part of us - people who are just as complex and nuanced as any. And yet, it seems at times that there are absurd standards, perceptions, and expectations about what someone who is "sick" looks like. This only exacerbates our already complicated relationships with our bodies.

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I did it! It's real! The first six Heartgirl prints are up in my Etsy shop!!!

Heartgirl prints on Etsy

You guys, I don't even know where to begin. This is SUCH a big accomplishment for me. I've dreamt of "being a real artist" for such a long time... As much as I've done art since I was old enough to hold a paintbrush, and even sold the odd painting or sewn item back in university, I was convinced it was just something I did as a hobby to pass the time.

But it isn't just a hobby - it's MY THING. It's always been my thing. And as incredibly challenging as it's been, I've finally squashed my serious case of impostor syndrome... I AM AN ARTIST!

I've been super duper laid out with a chronic illness flare for the last couple weeks, and as I've embarked on a Facebook fast, I guess I'm posting more here instead when I have things to say! 

For better or worse I usually use FB to kind of numb out and passively entertain myself when I'm not feeling well, so this has been a real challenge - I even let myself off the hook for a few of the worst days, cause frankly I wasn't actually losing any time to do more productive things. But I also use FB to stay in touch with friends, as do many people with chronic illnesses who can't get out and socialize in person as much as they'd like. Communicating online can be a huge way to avoid feeling completely socially isolated when you're sick a lot.

There has recently been a lot of discussion among the politically engaged residents of Grandview Woodlands about what an improved Commercial Drive would look like. The timing of this, during the extended time for sorting out the city's long term development plan for Grandview Woodlands, is critical as it could help set the tone for the next several decades of change for The Drive.

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This conversation was sparked by a new group that formed recently, the "Commercial Drive Action Group" (who now have a Facebook group called "Commercial Drive for Everyone", which the organizer initially presented to GWAC (Grandview Woodland Area Council) meeting attendees as a group interested in making The Drive more bike-friendly. My understanding is that now the mission is broadening to generally focusing on more people (vs. car) friendly movement around the area, slightly less specific to cycling. The timing of this, during the extended time for sorting out the city's long term development plan for Grandview Woodlands, is critical as it could help set the tone for the next several decades of change for The Drive

The day has finally arrived... 

Issue 2 of Chronically Yours is finished and for sale!

It's taken me a whole year to get this issue done... I've been kind of preoccupied, ironically, dealing with my health and wellbeing! Slowly, but surely, I've been working away at it, and after a little stapling party, it's done!

I was surprised how much (mostly private) feedback I got about a couple of my recent writings on friends and on health.

Almost every email, comment, private message, etc. I got about these posts was some form of this (paraphrased): "Wow, thank you for writing about this, I have totally been struggling with this so much and it's a relief to know I am not alone and/or get some info or insight about it."

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The reason this surprised me is that even now, after having this sort of experience with previous posts, I still often feel like I really am pretty alone in dealing with these things. I feel like I'm really going out on a limb by writing about them publicly. But again and again, I get these responses from people... which begs the question: Why aren't we talking about this stuff? No, this isn't a rhetorical question, I really want to know why everyone's not talking about this, out in the open!

This building is part of VGH, you wouldn't know how pretty it is from the outside. Sitting there, it was hard not to notice I was the youngest person for miles around who didn't actually work there. I was there to get a second opinion on my laryngeal granuloma.

Waiting for an appointment at VGH

This is a hard post to write. It might be a hard post to read. It might offend, it might confuse. And honestly, if it does either, I'm not really sorry at all.

I've had a couple brave friends confess to me lately that sometimes when I talk about my health (either in person or online), sometimes they don't know what to say. That they feel bad for what I'm going through and want to support me, but don't know how to do that, or what I need.

It's hard to talk to people who are chronically ill if you haven't experienced it yourself. (I won't speak for anyone with a terminal illness, as I very thankfully haven't had to go down that road myself). But it's not impossible. All you need is an open mind, and the willingness to throw away your assumptions or beliefs about what they are experiencing.

Before trying to explain what to say, I want to go through some basics on what not to say.

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