11:43pm November 17, 2014

Thank you — everyone — seriously.

This has been a really hard few year. At the beginning of the year I was preparing to die, until theyy found out I had severe adrenal insufficiency that had gone untreated for so long I would die if I hadn’t gotten treatment right in time. They literally couldn’t find cortisol or ACTH in my blood, and the ACTH-flooding-system-test thing showed my adrenal glands are so unused to getting signals to make cortisol that they still don’t make enough even when prodded pretty hardly. So I learned I’d be on steroids for the rest of my life, having to learn to adjust the dose for stress and illness, or I’d die, and that was that.

My mother landed in the ICU and coded during a myasthenia crisis, back in April – she just happened to be in a waiting room with my father for one of his medical appointments, or she’d probably have died before they could have gotten her to the hospital..

Then my father was diagnosed with severe, metastasized every-fucking-where terminal cancer, and not expected to live out the week, until they found out it was pneumonia and he was able to go home, but still only given three months to live at the most.

Then my mom and I got single-fiber EMG tests that all-but-absolutely confirmed a diagnosis of myasthenia gravis or hereditary myasthenia, still trying to figure out which one I have. I got an IVIG infusion (was supposed to be one of a series, never got that far) to test the theory that it was autoimmune. But instead the infusion caused a rare side-effect – aseptic meningitis and spinal meningitis – and I spent several days on a neuro ward being treated very well by the doctors and nurses, but at the same time with the worst headache of my life I couldn’t really appreciate it. Plus there was the usual problem of all my IVs infiltrating really fast, which is bad news when they’re trying to put Vancomycin, which belongs in large veins, into a finger vein (the IV nurse was beyond pissed and told them to just stop giving me meds because clearly all they were doing was torturing me). I had to be in isolation because they couldn’t risk that the meningitis was bacterial and contagious, and I couldn’t blame them for that, nor for the huge amounts of unnecessary antibiotics. I left the moment they would allow me out the door, but honestly they were all wonderful people who treated me well.

Then I got very sudden notice that I would have to decide about a two-bedroom apartment, and move into it, very qickly, or else lose my place on the waiitng list. So I started sorting and packing up all my stuff, and fighting wiwth my case manager over how to best do things. I finally told him “We pack your way, but we unpack my way.” Because last time I unpacked, I was given no say where anything went, and the apartment never felt like mine.

Then my dad got worse and decided to stop chemotherapy and die at home. Which not only put stress on us because of him, but because our mother has myasthenia gravis, more severe than my own, and the difficulties of taking care of him could well result in another deadly mysathenia crisis. So we had both of them to worry about, and tensions in our family started running high. We got into fights over things we normally wouldn’t fight over. And then my dad actually died, and that’s where I’m at now.

Through all of this, I have never gotten back down to a normal dose of my steroid, dexamethasone. A normal dose would mean I was not under enough physical or emotional stress to burn through cortisol faster than I should. I’m sitll on roughly twice the dose I should be, at my worst I was at roughly three times my normal dose.

Throgouhout this all I would not have done well without a lot of suppport, and that includes a lot of support given by people on tumblr.

To the people who bought me gum; Gum is not trivial or frivolous when you’re tube-fed and on steroids that increase your appetite. Gum is what stands between me and aspiration pneumonia at this point.

To the people who sent drainage bags: You’re saints, all of you. Drainage bags are also standing between me and aspiration pneumonia. Unfortunately a couple of them I ran through quicker than normal (it all depends on which spot breaks, some can be reparied and some can’t. I’ve had bad luck with two that can’t be repaired, ini a row, so I’m on my last one again.

To the person who sent the violin bow: I know it was an apology gift, I know (and I hope you know) you didn’t have to do that. But it plays beautifully, it’s more than I really hoped anyone would buy, it’s wonderful.

To the people who sent me money through PayPal this past month or two: You kept me from going into the hole, maney-wise. I can’t think how I’ll ever repay you. I have no overdraft protection. And I came within $6 – even with all that help – of going in the hole, this past month.

To my brother: Thank you for the air conditioner. Tnank you for the help paying for the apartment. You said you really wanted me to have this opporunity. I will do everything I can to make the best of this opportunity.

To everone who bought me things and continue to buy me things off my Amazon wishlist: It doesn’t matter if the gift is large or small, or whether it seems frivolous or “useful” It is meaningful to me. It is meaningful to me that people whose names I’ve never heard send me gifts with notes tattachedl I save every note, although they may have got lost in the move somewhat. The notes are often the most important part. They show me that people care. They show me that generosity is a real thing that real people have. They show me that my writing touches total strangers in a way where they want to give something back. They show me that what I do isn’t useless. They show me that other people are amazing. They also mean that each thing you buy me is something I don’t have to pay for. Especailly the gloves and the drainage bags are in constant demand around here and if I’d had to pay for them myelf, I would be worse than broke by now. I have been barely getting by, money-wise.

To everyone who writes to me publicly or privately to support me through the mess my life has been lately: Thank you. You’ve really helped me out.

To eveyone who has only been able to send thoughts or prayers my way, thank you also. I’m certain it helps.

To everyone who has wanted to do any of these things, but been unable to for any reason at all including pure inertia, thank you too. I believe intent matters. And if you wish you could help and can’t, then in some way I think you are helping, although I can’t explain it.

To anyone I missed above: Thank you too.

Thank everyone for being such wonderful people and making me see that total strangers can save my life, help me out, support me in hard times both financially and emotionally, and appreciate me in ways I didn’t know I was appreciated. The notes are so important to me because they connect these gifts to actaul people, actual individual people who do things for other people not because they have to but because they want to. And that means the world to me.

Notes: