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More awesome friends, and “new” medication.

While everyone else I know was watching the Super Bowl, some friends of mine on Twitch had something called the Squeaky Bowl.

I found out about it a few days before, as the guy organizing it needed my paypal email.  He used our joint charity streaming channel to host the event (a 48-hour stream), and said to me, “You’re our February charity!”

In 48 hours, they raised $3055.69 for me, and then a few more donations came in later, to get the total up to $3100.69.  (Yes, the .69 was on purpose, and actually pushed some people to keep donating.)

With the new insurance costs (turns out they’re from Forrest’s company, not the new ACA laws), this will help me for about 3 months.  I’m still completely flabbergasted, and grateful that I have so many people willing to help me, right now.

I recorded a thank you video, and there’s going to be an article on IGM on Wednesday about the event.

I’m just so thankful.  <3


You may notice that my speech is weird in that video.  Well, as I said in it, I’ve had a fever for 3 days, and I’m in a lot of pain…my muscles are just like “nope” whenever I try to move around too much.

I started back on Flagyl (yes, that’s the stuff that gave me the weird accent…but the speech thing started before I started taking it, again) and doxycycline (the stuff that makes me puke! yay!), because, well, we’re rotating, again, and the medication for the bartonella did terrible things to me, and I asked to not continue it.  My LLMD said what I was thinking: “If the side effects are that bad, and they outweigh whatever benefits you may be getting, then it’s not worth it.”  He felt really bad, and I was like, “We had to try it, right?  I mean, we learned, right?” to Forrest after the doc left the room, and he agreed, but it was a rough visit.

I also started on Mirapex for my RLS, since nothing else seems to be helping it, and I can’t sleep because of the pain.

Ironically, it’s gotten worse since I’ve been on the Mirapex, but I have no idea what’s causing it, because other things have changed, as well.

I’m also on trazodone, again…womp womp.  I’m on a really low dose, which should be helping, but it’s mostly just keeping me from being able to wake up well the next morning…so I end up staying in bed until 1 or 2pm after being awake until 4 or 5am that morning.

I’m not in great shape right now.  I’m trying to stay positive, talking to random folks, not getting too in-depth about stuff…basically just trying to stay shallow so my thoughts stay shallow, and I don’t get too bogged down and depressed.  If anyone’s wondering why they haven’t heard from me, that’s why.

I’m trying not to withdraw completely, which is why I’m making myself do this update.

It’s just rough to be like “this is how it is,” without making jokes or blowing it off.  I don’t like to make light of things in here, because this is where I…well…it’s where I write about how it is.  It’s a reference for me, and it’s been a reference for others.

I’m not in great shape right now.  I’m actually in pretty terrible shape.  But this is part of the healing process, and I will get better or die trying.  And I’d prefer not to die, kthx.

Thinking a soak in epsom salts wouldn’t be wasted, right now…I just wish I could find a good padding material for the tub that isn’t inflatable (and thus a creator of reduced tub depth)…

…and that’s pretty much all I’ve got right now, because my hands are starting to hurt.  <3


4 comments to More awesome friends, and “new” medication.

  • shlinky

    use regular foam rubber in the tub. after the tub drains, roll it up a little so it doesn’t block the drain, and it will drain as well until it’s light enough to pick up.

    • Jenn’s suggestion of using the yoga mat is pretty good, actually – I have one that I’m obviously not using for anything else, right now, and while it’ll be kind of big in my tub, it’s something, and it’s much better than the hard tub surface.

  • I’m sorry it’s been rough. Awesome stuff with the SqueakyBowl, though. Bravo to the people behind that one.
    You might try a yoga mat for tub padding. They are thin a squishy and the water won’t hurt them.