Saturday, March 16, 2013


I got reminded today that it has been too long since I have updated my blog, so an update is in order. So here are where things are at these days:

1) I had an ERCP at the beginning of Feb. On the first in fact. I ended up in the hospital overnight, which wasn't too horrible despite them getting my meds completely messed up. Then I very smartly left the hospital to go to school for a meeting and then landed myself in bed for the next two days, go me.

2) Still no date for my surgery, but it could probably happen pretty much any day now. I will get a whopping week to two weeks at most notice before my surgery. I'm half expecting to get a call on Monday for the week after next. I'm dreading it a bit if that is the case, but part of me is just ready to know when it will be so I can make the plans and just get it over with. I found a new thing to be anxious about though, everything that I see about GI surgery seems to necessitate bowel prep, and having never had to experience that particular *erhm* pleasure before I am less than thrilled. I don't do well with swallowing medical fluids so despite the copious advice I've received on which bowel prep to go with should it be required, I am not at all confident that this is going to go down the way the surgeon would like it to.

3) I gave my first ever peer reviewed conference presentation with my sister today. That was pretty awesome, then I presented on finding kin and building communities of disabled people who are similar to you. That went really well too. Also people seemed interested in my blog, so hi new blog readers.

4) My shoes are still hidden in some Lyrica wasteland. We are experimenting with upping my Lyrica a bit too. The first time I tried I started developing random muscle twitches, so we are trying again. My doctor eventually wants me on the max daily dose which I'm nowhere near. We'll see what happens. The random highs have stopped though which is really nice. We'll see what my body can tolerate and if it says no, so be it.

5) My meds are still a work in progress. We are doing better now though. We found an NSAID that works, and I just have to be careful that I don't give myself ulcers or internal bleeding with it, but it actually controls some of my pain which is amazing. Still experimenting with the diabetes meds and some other stuff too. We are definitely getting closer to a combination that actually hits all of the stuff going on with me which is awesome. I'd love to not be taking like 20 pills/day but if it actually helps that is the important part. I'm starting to go back to being able to take multiple pills at once again and that is exciting.

6) I'm generally doing pretty well and keeping busy. I've been sick a bit from my pancreas, but it hasn't been more severe than needing a day off school and a lot of medication at home. It's been nice to manage it myself and not need to end up in the ER.

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