Wednesday, December 21, 2016

I could have sworn I updated this thing.

By golly, I didn't. Sorry about that.

Not a lot has been going on. I was too weak and broke to go to renal clinic, so it was bumped to February. Internal medicine made me furious by once again ignoring my pharmacy's requests, and I had to raise hell. Not surprising. I have an appointment in a few weeks, but I plan to bump it to sometime after renal clinic.

I'm having some symptoms that are TMI, mostly my bladder issues which are getting worse. I hate hate hate the urologist and it's pointless to go when I already know the medication is a no-go (I've already been there and done that with internal medicine). The only option is to reduce my diuretic intake, which results in muscle weakness. So there's no winning.

I'm receiving emails about Keveyis fairly often, mostly from people who had the same experience that I had. There seem to be plenty of us who were not able to tolerate the medication due to potassium shifting. Physicians and pharmacists could stand to consider further research on Periodic Paralysis and the fact that the drug could work if potassium supplementation was sufficient. Some patients simply don't have the physiology to handle Keveyis and its relative Diamox without heavy electrolyte supplementation. Even the amount of potassium I'm on wasn't enough, but I wonder what would have happened if supplementation had been increased while on Keveyis? I'll never know now. What I do know is that I'm never Hyperkalemic, and that has been proven. My levels are average or below on 100+ mEq a day + PRN emergency K, which I have to take often. Food is worthless. When you have a channelopathy, don't expect a "high potassium diet" to make much of a difference, if any. It made no difference at all for me. Nor did a "high phosphorus diet", "high magnesium diet" and so forth. I'm forced to high doses of these supplements in order to function.

I haven't felt like talking about it much lately, but that's what was on my mind off the top of my head. It's been a stressful year, and I suspect the next year and several years following aren't going to be any better thanks to our new fascist regime. Don't even bother emailing me about that statement. I'll ignore you.

All we can do is the best we can with what we're given, but sometimes, we have to fight to get anything at all. Don't hesitate to be your own advocate. Chances are, nobody else is going to do it for you.

May we all survive the next four years, and beyond.