Not dead.
Not dead. Just not often on here. It's a weird line to straddle, however. On the one hand, I don't really talk about medical stuff or bitching about things like that on social media, for a variety of reasons. On the other hand, I kind of want somewhere to say what's going on with me.
So, I'm not 100% sure on one part of this, but it's looking like I have a "common comorbid" diagnosis, which is two or more things that usually go together. I have EDS, which I knew, and I have POTS (Postural Orthostatic Tachycardia Syndrome) and it's looking like I may also have MCAS (Mast Cell Activation Syndrome) but I will know more after I see my histologist person, which will be after Pennsic. This would explain the sensitivity to about nine food types, the weirdly specific asthma (which somehow was only triggered by certain things and stopped recently) and a bunch of other stuff.
This is absolutely fantastic news, because the main treatment for MCAS (aside from not attending public schools, that's a standard testing joke, not a joke about illness in populations) is antihistamines. Seriously, Zyrtec. So given that I have indoor allergies anyway and why the hell not, I've started taking that. The notion that Zyrtec may fix my digestive distress is ridiculous. In a good way.
Going to Pennsic armed with the knowledge of POTS is huge. It means doing things differently so as not to trigger the POTS, which is great. I've learned ways to stop it - kneel on the ground instead of bending down, sit down instead of leaning over to pick something up, that sort of thing. It has informed so many of my miserable moments throughout the years. Stuff I thought I should be able to do, because humans can do that, and I can't. Like getting up quickly in a LARP as people yank on my arm and pull me off balance. Or bending down to pick stuff up in my room and getting lightheaded and stopping early because I feel like I'm going to puke.
I'll be going to War with a plan, and knowing I need sleep, and not to lean down to do stuff as much. This is all good. I just hope I'm quick enough to modify things and figure out how to do them that I don't seem lazy, and horrid.
That's all for now.
So, I'm not 100% sure on one part of this, but it's looking like I have a "common comorbid" diagnosis, which is two or more things that usually go together. I have EDS, which I knew, and I have POTS (Postural Orthostatic Tachycardia Syndrome) and it's looking like I may also have MCAS (Mast Cell Activation Syndrome) but I will know more after I see my histologist person, which will be after Pennsic. This would explain the sensitivity to about nine food types, the weirdly specific asthma (which somehow was only triggered by certain things and stopped recently) and a bunch of other stuff.
This is absolutely fantastic news, because the main treatment for MCAS (aside from not attending public schools, that's a standard testing joke, not a joke about illness in populations) is antihistamines. Seriously, Zyrtec. So given that I have indoor allergies anyway and why the hell not, I've started taking that. The notion that Zyrtec may fix my digestive distress is ridiculous. In a good way.
Going to Pennsic armed with the knowledge of POTS is huge. It means doing things differently so as not to trigger the POTS, which is great. I've learned ways to stop it - kneel on the ground instead of bending down, sit down instead of leaning over to pick something up, that sort of thing. It has informed so many of my miserable moments throughout the years. Stuff I thought I should be able to do, because humans can do that, and I can't. Like getting up quickly in a LARP as people yank on my arm and pull me off balance. Or bending down to pick stuff up in my room and getting lightheaded and stopping early because I feel like I'm going to puke.
I'll be going to War with a plan, and knowing I need sleep, and not to lean down to do stuff as much. This is all good. I just hope I'm quick enough to modify things and figure out how to do them that I don't seem lazy, and horrid.
That's all for now.