Saturday, September 21, 2019

Gom Jabbar

"What's in the box?"


What's in your heart?


Sometimes I would give anything to have someone hold a poison needle to my throat, waiting for me to flinch or act out from the pain inside my heart, the pain that is my life.

Who needs a million lifetimes of other memory when one brain can contain so much pain.

A few months ago I had to start a new non-standard psych drug. Amazingly I'm not allergic to it. But it had a weird, serendipitous side effect.

Suddenly pain I didn't even realize I had vanished. My body stopped hurting. I couldn't even tell I was hurting anymore — it was background radiation. I'd just adapted to constantly hurting, until I started this new medication.

It was unexpected, to say the least. The medication did do its job, my hypomanic mind calmed back down. I think I was only agitated for a few weeks.

But… I didn't expect or anticipate the other pain loss. From talking with my primary doctor, and doing research, it sounds like I've got some degree of nerve damage from my latent Epstein-Barr infection (for folks playing along at home: that's the virus that causes mono — it has pretty much fucked my immune system and every so often, typically when I'm really stressed/burnt out, I'll have a relapse; yep, I get to have mono over, and over, and over again). Which isn't surprising since Epstein-Barr is in the same viral family as chicken pox/shingles, which are also known to cause nerve damage.

Similar to trying to think back to a time before I had chronic fatigue, I can't think back to a time before I hurt. I wiped out most of my childhood because of trauma. I would have been really, really young. Probably under 10.

It's really hard to think about how much pain I have. Physical, emotional, psychological… There's just so damn much of it.

Coping with all my pain is exhausting. I go to therapy and try to work through the psychological and emotional traumatic pain. I go to so many different doctors to try to figure out the physical pain, which lately has been an incredibly frustrating and disheartening "well, there's nothing I would do for you" "you're asking for a bleeding edge treatment from Europe, I'm not comfortable doing that" "there's no way all of your symptoms are coming from this condition, have you had XYZ test done? It's probably something else. I'm not comfortable recommending the bleeding edge treatment from Europe because all of my [ancient] patients aren't happy with the outcome, and then you'll be my patient forever" — since May I've been trying to get the local teaching hospital to consider giving me a surgery that actually gives me hope, and it's so frustrating. Also, doc insisting I'll still be your patient forever? Fuck me, you're joking, right? You won't listen to me, you would never be a doctor I select for myself.

So, sure, the nerve pain is gone, but the chronic fatigue is still there. It's getting worse. I had a thyroid ultrasound on Wednesday and my thyroid is almost gone. I don't understand why, with my thyroid targeting autoimmune disorder, these doctors won't even humor the idea of removing the target of the antibodies. Maybe there's something in the science I don't understand — maybe the thyroid targeting antibodies will start targeting some other organ (like, look, I'm not a doctor or scientist, but I am pretty fucking sure that isn't how targeted antibodies work).

"There's too much scarring, too much damage. The surgery would be too hard. The odds that we'll damage your vocal cords or something else in your throat are too high." Oh for fucks sake, the odds are infinitesimally low, especially since your surgeons perform over 800 surgeries on this specific gland a year.

Fuckers, don't you understand? All I am is scar tissue. All I am is damage. Take the fucking butterfly gland out. Get it out of me. I am so done with butterflies.

Maybe I just don't get it — maybe my thyroid has almost entirely atrophied away after 23+ years of having an autoimmune disorder picking away at it. Maybe all that will be left in a few more years will be scarring.

But there's nothing to stop the autoimmune disorder from continuing its destruction. Hashimoto's thyroiditis is a "woman's disease" so no one gives a fuck about it. Oh you've got euthyroid levels? Your labs look normal? That chronic fatigue must be psychosomatic, or maybe it's something else. No I don't have anyone to refer you to, chronic fatigue is a woman's disease, there aren't specialists for it outside of woo-y naturopaths. You can go see them, eat a handful of pills every morning, spread out over 2 hours.

Been there, done that. Same shit, different day.

I know from listening to my body that my thyroid levels fluctuate more than I can easily capture in every three month blood draws. But doctors don't listen. Don't care. "Take more medicine." "Let's add back cytomel, that should help." Been there, done that, made things worse. Went hyper thyroid and jittery, like I'd had 5 shots of espresso, but with chronic fatigue and heat sensitivity and overheating, so all I can do is lay down, twitch, and sweat.

I'm so sick of walking this tightrope of trying to balance out my body.

A thyroid is like a thermostat that tries to keep your body at the right level of functioning. Mine hasn't worked properly in a long time, and I've got something in my body trying to DDoS it off and on. It keeps getting weaker and weaker and weaker as time goes by. Even with my medication it gets stuck in too hot or too cold periodically, and then I shut down, because it triggers the chronic fatigue, brain fog, and mood swings.

If I understood the ultrasound properly there's less than a quarter of what should be a thyroid left in my neck.

-sigh- I want it gone. I want the surgeon to intentionally leave a scar. I won't even mind if my voice is permanently hoarse. Fuck, I'd welcome it. I would even welcome losing my voice. No one has ever listened much to it anyway, it wouldn't be a loss.

I so desperately want to close out the thyroid chapter of my life. Take whatever modicum of tissue is left and have it cremated. Spread the ashes someplace where that part of me can rejoin the carbon cycle.

But I have to keep carrying this pain. Keep carrying the scar tissue that remains from this atrophied gland. Because no one will listen and remove it, free me from it.

I think the thing that upsets me most is that I can't choose which pain I have. Can't choose which scars I bear. Not in this situation.

Fucking butterflies. Fucking thyroids. Fucking pain. Fucking trauma.

I'm sick of them all.

Life in a pain box without a gom jabbar sucks.

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