Health

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.

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...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.

Ariane sitting at window

Here's a truthbomb for you: I'm not going to get better.

Before you jump in with a barrage of platitudes, please just check your healthy privilege. This isn't about the "what-ifs" and the "maybe somedays". This is about reality, this is about my reality. And if I sound angry, it's because I am angry, and I bloody should be.

This is about looking at what has happened so far, and predicting what will happen in the coming years based on reality. Every month I've gotten sicker. Since five years ago, when I was still able (albeit, with difficulty) to work 30 hours a week, keep myself fed, and keep my home respectably in order all on my own, things have gone so far downhill I can't even see where I started anymore. I can't do any of that now. I can't work. I can't take care of myself or my home without help. I'm no longer financially independent. I can't go most places on my own, and I can't go anywhere without a mobility aid. I can't travel (the two small attempts have been miserable failures). And I've lost a significant chunk of my prime career building, not to mention childbearing years, to chronic illness that has continued to go un(der)-diagnosed. Yes, I cope. I try and make the most of things. But the reality is crushing.

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: 123.)

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.

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