This is my becoming...

Since I’ve gotten nowhere with my hematologist, and really gave thought to what it is he has said and done, I knew I was on my own. His refusal to give me a phlebotomy at 53.3% because it wasn’t 54% (where’d he even get that number??) sends the direct message that he does not care about the affects, or my life. Not the migraines, not the discomfort. Nothing. His “Maybe you should just stop taking testosterone and bleed” tells me he’s punishing me for being trans. “Maybe just don’t be trans.” 

I did bleed. Hell week came back. I knew it would. Now let me say that for an entire month, I endured cramping before it. My back was killing me. My hips hurt like hell, radiating pain all the way down to my toes. I experienced depression worse than ever before, and the reason why only just registered. Along with other things I plan to talk about in this post. My migraines came back full force, like they were in high school. And the moment hell week hit, so did everything else that comes with it. WORSE pain. WORSE nausea. SEVERE cramping. SEVERE FATIGUE. I spent most of my week ASLEEP. My fatigue has been getting worse all month, but it hit extra hard during hell week. I stopped taking my T entirely since the last week of May. I had to. With 53.3% hematocrit, and no help from him for a phlebotomy, I had to.

So on the 17th, there was a blood drive. I went. It was going to deplete my resources severely but I’m trying not to die. They turned me away because my pulse was 108 (she counted by hand, mind you.) I went to the hospital, hoping they’d do a phlebotomy. They won’t. I can only get my hematologist to do it. FUCKING GREAT, RIGHT? But my pulse, temperature, oxygen, and blood pressure were all normal. So idk wtf that bitch at Red Cross did, but she fucked me over for sure. And whoever’s life my blood could have saved. But the hospital did a blood test at my request. I’m down to 48% hematocrit (I’m assuming from not fucking taking T at all for a month), so fuck it, I’m starting my T back up. But the trip to the hospital was torture. They all kept misgendering me. All of them. Every single person. And the ER doctor said “the case worker says it’s hard for young people to get home care” and I started crying because my youth shouldn’t be a goddamn death sentence, and she just WALKED OUT WITHOUT A WORD. Zero empathy. She didn’t try to console me. She didn’t try to figure out what she could do or how she could help. Nothing. Nothing at all. She just walked the fuck away while I’m sobbing and alone. And I had two people ask me if I really needed my testosterone. Are you fucking kidding me?! DUH! I NEED IT! The case worker kept trying to blame insurance for why I can’t get this done from home, when that’s literally not the case. Even my insurance Case worker WANTS me to be able to get the stuff from home and she’s doing all she can. The people that need to help her do it are the ones not helping.

Yesterday? What yesterday. I slept all day. Literally ALL DAY. 7am-8pm. That’s the kind of shit I did pre-T. And then it registered that testosterone has vastly improved my quality of life. My migraines aren’t as strong or frequent on T. No Hell Week, which means no cramping, bleeding, or appetite issues aside from my usual ones. My depression isn’t as strong on T. Seriously, without it, I’ve spent 99% of my day thinking “I wanna cry. But why? Can I just fucking die already??” I have more energy on T. I feel freer on T. Less pain on T. I need T more than I need oxygen.

I'm in a serious catch and idk what to do. I'm completely homebound because of Covid and lack of resources I need as a germaphobe with OCD. I'm not even sure how to organize this, so I apologize in advance if it's confusing. You can ask me questions if you need clarification.

he/him or they/them pronouns only

CW: awful doctors, blood clots, needles, misgendering/transphobia, hell week mention, ableism

So I take testosterone in gel form, and I have a blood disorder called factor V leiden, in which I'm at risk of blood clots. That means monthly blood tests, and when my hematocrit gets too high due to the T, I require a phlebotomy (bloodletting, yay!) I was fairly homebound before covid, for details I don't want to get into, and had been asking my hematologist for months for help in setting up blood tests and phlebotomies from home. He told ME to find an agency and run it through insurance. So I did that. He put it off for two months to fill out the prior auth form which in the end wasn't even needed (and seriously went on to say he never got it while I was literally there when they printed it out. I HELPED them find and print it.) This entire time, I haven't been able to get a blood test or phlebotomy. My hematologist hasn't pulled through. Last I spoke with him in early May, he very unsympathetically told me "I know you don't want to hear this, but maybe you should just endure hell week (except he just phrased it like 'bleed') and lower my dose of T in response to me telling him I had already lowered my T as much as I could. He has NOT helped me with figuring out a solution here, and his office takes forever to get back to my insurance case manager. He even misgendered me during the phone appointment, and has done so repeatedly in office, IN FRONT OF OTHER PATIENTS.

My primary care doctor worked it out so I could do a blood test from home (by doing it MYSELF. Yes, I stuck myself repeatedly until I filled their vials and had someone return the blood to them. It wasn't a terrible experience but it's not one I should have had to go through, and I'm gonna have to do that EVERY MONTH) but he understandably doesn't want me doing a phlebotomy myself. I got the results back from that test, and my hematocrit is 53.3%, and my hematologist says 54% and above, I'm at risk of a clot. I'm REALLY CLOSE HERE! By my test next month, I could have already died of a clot. He was once again unsympathetic and will not help. My primary care doctor won't help this time because he feels this is something best left for said hematologist. So while he'll continue to provide home test kits for me, everything else is out of his hands and is left up to the hematologist who refuses to do anything because I'm "not at risk YET". At this point, my mom thinks he might be doing this on purpose. He's literally waiting for me to cross into that threshold where I can get a blood clot. He's really waiting for me to die.

My caseworker was supposed to be finding alternatives in my county as far as home testing and phlebotomy, but she told my insurance case manager that she had talked to me about phlebotomy from inside my car (1. She didn't. 2. It's not possible. 3. She talked to my mom about tests that way, back in FEB and my mom told her IT'S NOT POSSIBLE) and she was very disrespectful when she did speak to me (via text. writing my entire experience off as willingness. When I told her not to do that because it's ableist, she didn't bother to respond at all and I haven't heard from her since) Just like every other  caseworker I've had, she's not interested in helping me. By lying to my insurance, I could have died. If I hadn't called my insurance worker, I would have never known, and my insurance worker would have thought I found a solution and would have stopped looking for alternatives.

5/16/20

Yes I'm aware it's the 23rd now but whatever. I just washed and cut my hair. Being quarantined in a super shitty environment sucks ass. Anyway, I've been on T for two years. I'm not even close to where I want to be 😭

So I just woke up from the best/worst wet(ish) dream ever? I'm semi-cycling from lack of T (like... Blood tinged pee but hella cramps.)

I donated blood. Pretty sure my levels were high again so I might request staying permanently on a half dose of T.

Update 10/12/19

My eyebrows are darker. Still ugly though. Losing weight even though scale says no. I'm definitely thinner. Idk why I weigh the same. I really doubt it's muscle. I did nothing for it, I barely eat or drink anything and I haven't been taking T because I don't want a blood clot.

Tmi:

Bottom growth is great. Not surgery in sight. No help with it. Have to go out of network no matter what.

Happy coming out day (a day late idec)

9-18-19

Feeling masc

9-20-19

I lost like... 10lbs. I'm still not where I wanna be with my weight but I don't hate it as much as I did. So I feel okay enough to share a photo of my belly. Not because of weight but to show the body hair. I definitely have a lot more. While it was initially one of my concerns, I've grown to like it. I shaved it off two months ago and regretted it. So if you're on the fence because of it, I wanted to let you know that that might change after. It might not, but it might.

9/14/19 Cut my hair. Might dye it soon. The red is gone 😭

That said, I'm back on half dose. Levels are okay again. Voice is still meh. Much hairy. Surprisingly okay with it.

Firstly, happy pride month! I missed both local pride marches so I'm miserable.

I've been on T for over a year now. I donated blood in April and my hemoglobin was a bit raised. I had my three month follow-up with my hematologist on Monday. My hemoglobin was too high and I was at risk of a blood clot. He asked if I had a change in my T dose and I haven't. But I'm going to planned parenthood on Friday so we'll see if they have any clues as to why the sudden change after doing so well for almost a year.

I had my first phlebotomy today, and I have to be monitored every month again, and have a phlebotomy if it's high. Which is basically the same as donating blood, except in America we're all about wasting, so while there's a high demand for blood, They don't bother using discarded blood for that purpose. My blood, even now, is safe for donating. It could have gone to someone and I'm upset that it literally just got tossed out. But I needed it out of me, so here we are. I guess I need to find me a vampire boyfriend or something so he can just drink it and it's a win win 😂

Finally cut my fucking hair. Hoping to dye it tomorrow and then do my license next week *fingers crossed* might be going to pride on Sunday.