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 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.

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 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. 

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.