Talking About It

I have been sick all year.

I’ve been pretending I’m not because it’s the only coping mechanism I know and if I don’t stop doing things then I don’t feel pain and everything is fine.

Until it isn’t.

At some point I crash and my immune system disintegrates and I get sick with one thing after another. Not helping is that insurance is requiring me to lower my testosterone level in order to even try patches instead of injection, which meant that right after school started my Doctor had me lower my hormones.

First the nurse told me over the phone to decrease my dose from .5ml to .25ml which doesn’t seem like much but that takes me from 100mg to 50mg in one fell swoop and need I remind you, testosterone is an anabolic steroid? That sent my body into withdrawal for 3 weeks. They called me the next week to correct it after I complained about dying, and I was to lower my dose by 20mg every 2-3 weeks, so .4ml for 3 weeks, and .3ml for 3 weeks. I got to week 2 of the .3ml right over midterms and it was h e l l.

That was a mistake. I went in to see her two weeks ago after being so out of it I couldn’t go to school half of of the time and at that point she said she was going to consult with someone who had more experience with HRT. Turns out that I’ve felt so shitty because my hormones were dropping too fast, so now we’re back up to what I was taking for another 6 weeks and then dropping by 20mg for 6 weeks and then I don’t know.

More than that, I’ve been seeing my doctor about the same Auto-Immune-ish symptoms for over a year. I’ve been fatigued for as long as I can remember but that is intensifying dramatically. As is my Raynaud’s, dizziness, brain fog, muscle spasms, and insomnia. My bloodwork isn’t really telling us anything, but it’s triggered by stress and my cortisol release mechanism is on a hair trigger.

All of this has been making me super anxious which just compounds all of those problems (I can only laugh at the hilarity of stressing out about my stress disorder, IF ONLY I COULD STOP I WOULD BE FUCKING FINE. OMFG). So much so that for the last week and a half I’ve been beside myself, unable to sleep, unable to cope, just feeling like my body was made of adrenaline, until I managed to take half a xanax and have since started to slowly crawl back to okay.

Now I desperately need a psychiatrist and a doctor who can refer me to a rheumatologist.

I’ve been so devastated because two weeks ago I started really, understanding what it means for me to be disabled and sick. I dropped out of performing at the spring ballet recital because I haven’t been able to make it to practice due to pain. I have to manage my physical energy spoons judiciously and I fucking hate it.

I’m so frustrated because I’ve FINALLY gotten to the point where I feel alive and like I’m doing the things that bring me fulfillment and joy, and I am NOT casually okay with being dead anymore, and NOW my body is trying to murder me? NOW?!

R U D E

who gave it fucking permission?

I don’t have a resolution to this other than: I’m currently switching Doctors because like 8 people have told me I need to, including my therapist, and I’m working on finding a psychiatrist who can help with the anxiety spike, and I’m not dropping out but I am worried I’ll have to if I don’t get better.

I’m just so angry and hurt and feel betrayed and I feel like I need to grieve for myself but that’s a really confusing feeling. I have therapy on Wednesday at least.


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