Close up photo of person's neck and upper chest, they're wearing a necklace that says "Resilience".

It's hard to believe, but it's already one year ago that I did my IVIG loading dose and began a new chapter of my life: that of a sick person who's actually getting treatment for their illness. After 30 years of being sick and undiagnosed, and roughly 5 years of developing all kinds of strange new symptoms, which progressively worsened until I was very scared that I was going to die of whatever degenerative disease I had, to have gotten a diagnosis for a treatable disease was a relief. But that relief didn't mean things were suddenly okay - they were far from it. This past year has been incredibly hard, I've been to the hospital more times than I can count, between my infusions and the many ER trips I've had to make because of side effects or because of my illness flaring.

The reality of the treatment and life as a certified sick person hit hard - diagnosis wasn't the end, but just the beginning of a new difficult chapter. Nearly overnight, I went from doctors either suggesting my illness was just stress or that I needed a psych evaluation, to doctors calling me a "complex patient" and often being intimidated by the seriousness and complexity of my medical condition. I went from often being treated like a joke by specialists or at the ER, to being a patient doctors offloaded because they felt they were in over their head with me, and - at least as long as I go to the hospital where my neurologist and treatments are - FINALLY being treated respectfully and effectively at the ER.

Looking back

As you can see, I dropped off posting after the first month of treatment. It's all kind of a blur at this point, but suffice to say this has been three of the hardest months of my life. Just the last couple weeks I've finally started to feel like myself again, and start to pull myself back together after just being in straight up survival mode for most of the summer.

Pardon any typos - I tapped this out on my phone, since my laptop is in the shop!

Where were we? Well, it’s been almost a month since I started the IVIG loading dose. I had the five day loading dose at the start of June, and then I had my first follow up infusion last week. Before that, I also had an emergency appointment with my neurologist because of the aseptic meningitis lingering as well as my still having this strange pressure in the side of my head. The day after I saw her, I also had a 4th ER trip (TMI coming up!) because I’d been having so much diarrhea that I started pooping blood - luckily (?) it seems like it was probably a hemorrhoid bursting, so now I have one more nagging thing going on. I’ve also added to my long list of medical things going this summer: a CT to check the blood vessels in my head, and a visit to the GI doctor. Wheee. 

I can't believe it's already been two weeks since I started my 5 day loading dose of IVIG. It's a total blur at this point, but I wanted to try and document some of what I remember before it completely fades, and before all the steroids are out of my system (since they're still making my hands a bit more functional right now!)

I actually drafted this blog post over a month ago, but hadn't had a chance to proofread and post it. And in the meantime, a couple weeks ago after calling the hospital directly to try and figure out what the hold up was, I got The Call to come in Monday (of last week) and start my loading dose of IVIG. I did the standard high dose loading dose over 5 days last week (plus 3 ER trips - it's been one hell of a week and a half and I'm still feeling REALLY rough). I got a severe reaction which I wasn't at all surprised about - aseptic meningitis just like I've had from other medications in the past - but it was much worse this time. I'd read it was a possibility, and knowing I was prone to it I tried to get more preventative meds, but they didn't feel it was necessary - until I ended up in the ER all night with 10/10 exruciating pain in my head and neck, and extreme nausea and light sensitivity. I was delerious in the ER, I've never been in that much pain in my life.

So, I said at the start of my previous post that I got sidetracked by some things that happened...

What happened is before I had a chance to post it (and a second post that I wrote up but haven't quite finished yet), I had maybe the biggest rollercoaster of a week of my entire life. In the span of a week, my father, who I've been estranged from for just over five years, had a major heart attack and died... and then I got my big diagnosis.

I crashed incredibly hard from all the stress, both good and bad. Then I immediately had to get back up and put grief on the backburner, so I could keep running this medical marathon. A diagnosis isn't the end, only another beginning. All of a sudden I have to do tons of testing, start new medications, start on other new protocols, etc. It's going to continue like this for at least a couple months before some kind of new routine settles in.

Note: I wrote this up a couple weeks ago, and was going to post it at the end of last week, but then some things happened and I got side tracked, and well - I'm going to post it after the fact and backdate it because why not.


...the more they feel like Groundhog Day. I thought I should do an update, as apparently some people do still read my blog for my health updates??? Keeping a personal blog in this day and age is a minefield, and half the time I think I should just take it offline, but I guess that day is not today.

Last week, a documentary aired on the CBC called Sickboy. It's about these guys out east who are best friends, one of whom has cystic fibrosis, and they do a podcast of the same name. The doc and the podcast are both not about health conditions, but what life with illness is like. And they leave NOTHING unsaid - they really get into all the stuff you normally don't talk about and it is the most comforting thing I've come across in ages. I don't know how I missed out on the podcast this long, as it's been running for quite a while now, but I've been enjoying listening to old episodes and getting acquainted.

First some links, and then some thoughts.



Last week I had an MRI - it wasn't my first, but it was my first really long one. A few things caught me by surprise, so I wanted to share what they were, as well as a few tips for making long MRIs more comfortable. 

Door of MRI2 at VGH

Here in Vancouver, they've started running the MRI machines 24/7 to get wait lists down (aside: did you know Canada has one of the lowest per capita numbers of MRI machines among OECD countries?), so when I got called for my appointment, the first one I was offered was in the 2-4am slot. Yikes - the last thing my sick body needs is being up all night. I opted to compromise and wait an extra two weeks to get a slightly less arduous time slot, resulting in my approximately 80 minute scan being scheduled for 11:15pm-12:35am, with an arrival time of 10:45pm. Because I've developed a pretty hefty case of dysautonomia, which kicks in like a ton of bricks around 10pm every night, I anticipated struggling a bit while I had to be vertical between leaving our home and laying down on the MRI bed.

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!

Medical ceiling mural

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.


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