Health

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.

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

I just came across this video of model Melanie Gaydos from the What's Underneath Project.

What an amazing, humanizing, project and video. Usually stuff like this rubs me the wrong way, but this felt different and lacked that exploitative quality (maybe because it's not a project specifically about disabled/chronically ill people?)

I love the way she talks about her body and her life so much - I can relate to her story even though her personal and health experiences are magnified by the severity and visibility of her illness, and the intensity of the history with her family...

I've been biting my tongue on this for so long... I know how some of it is going to sound. No, really, I know. People just don't say these things, or maybe they don't think about them or realize at all. It's very real though. There is a hierarchy of illness, and it leads to massive inequality among people who are sick. It leads to unthinkable hardship for those who have the "wrong" kind of illness. It's like some form of sickness-ism (discrimination of sick people based on exactly which type of illness they have).

My friend Stephanie summed up life with ongoing illness so well:

"It's very upsetting to wake up day after day with hopes and plans and dreams and be completely unable to do any of them."

I quoted what she'd written on Facebook, followed by my own addition:

I often think about how lucky most people are to just be able to do what they want without such immense and non-negotiable restrictions. I don't think I even remember what that's like anymore.

That I can usually cope with. What's hard to cope with, what makes me really sad, is how people who haven't been through this can't understand it. They still believe somehow it's a choice. That if I really wanted to, I could just do things. That the barriers are only psychological (and I don't mean mental illness, I mean lack of will or motivation).

I will never be able to understand how anyone could truly believe that someone, that I, would choose to live like this.

But this problem is a symptom. I've been thinking about why this mentality exists, and that's my conclusion - it's a symptom... of the hierarchy of illness.

It's been a while now since I've come out of denial about my illness. I've had some time to at least begin to grieve the losses that have come with it. Friends, family, future plans, hobbies... my loss list is long and detailed. I have also been able to receive some gifts from my illness - it's not all loss. But the gifts don't make the loss any less real, any less difficult.

One of the bigger things I've lost is my ability to be gainfully employed. I haven't been able to work even part time in over two years. All the shame, judgment, and social implications aside, there is something that feels degrading about having my daily purpose and to an extent, my financial independence stripped away. These have probably been the hardest for me to adapt to. And yet, adapt I must and I will!

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Me, at peace, making art in my home studio, 2013
I want to maintain this elusive calm in my work life

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.

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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Most of you regular readers can skip this post unless you're just curious - it's time for another update on my throat issues. I know there are tons of people out there struggling with LPR (hello!) and they seem to find their way to my blog in numbers that are pretty astonishing, so I wanted to share what's been going on lately. If you want to read further into my experiences with this, the next most recent post was at the end of 2013 and is here, and my first post from the start of 2013 is here.

Julia NelsonThe post below was originally written on November 5th, 2013.

This morning, I searched my site for any unpublished posts, wondering if I had anything half-written lying around on here waiting to be completed. I didn't even remember writing this (admittedly my memory hasn't been amazing lately thanks to the brainfog), and only now vaguely recall deciding to sleep on this one before posting it, feeling a bit nervous, or like it wasn't my place to write it.

Julia was born the same year as me, 1980, and her husband James recently reminded us on Facebook that it would have been her 34th birthday last week. I guess it's fitting for me to find this now...

Hello and happy late spring!

I've been a bit quiet on here lately, but it's not because I've grown tired of writing online, or any of that nonsense... I still love having a way to "talk" to you and share, and with Facebook "pages" going down in flames, this feels like the right place to keep doing that. The reason it's been quiet is because Bruno and I were giving my site a spruce up! A new design that's more colourful and has an inviting vibe.

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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

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