Misbehaving Meatsuit: Part I Don't Even Know Anymore

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disability  blood 

This is one of five paintings I made in early 2016, after I had a cancer scare.

Blood No. 4

And I’m having the same scare again.

At the beginning of July, I started a new blood thinner. My insurance wasn’t going to cover Eliquis anymore, so my hematologist switched me to Xarelto. He said it shouldn’t be a big deal.

About three weeks after I started on the Xarelto, I started bleeding–I thought I was getting my period. And then it kept coming. I’ve been bleeding for almost three weeks now.

I reached out to my hematologist, and they looked at my labs and I mentioned my concerns about a recurrence of pre-cancerous cells in my endometrium–complex hyperplasia with atypia, it’s called–and he decided to defer to gynecology.

So I called the gynecology practice and after a bit of discussion, we decided that I’d go in for a pelvic ultrasound. They were able to fit me in this morning at Wilmington Hospital. This is the sort of ultrasound where you have to drink a lot of water beforehand so they can then press very hard on your bladder with the wand.

The tech wasn’t able to get as good of images as she’d hoped from the pelvic, so she suggested that we also do a trans-vaginal ultrasound. The one I had 6 years ago, the tech was pretty brusque and unfriendly. The tech today was very kind and gentle and told me when she was going to be moving the wand and in what direction. It was still extremely upsetting and I dissociated for at least part of it.

Then it was waiting time–or so I thought it was. It actually ended up being about an hour after I got home that gynecology called me with results: my endometrium was thickened when it shouldn’t have been (I have a hormonal IUD that’s supposed to keep it in check–and the IUD is still in place). Were it not for my complex medical history, they would have recommended a combination D&C and biopsy but since I do have a lot going on, they suggested a biopsy first and then making a decision based on those results.

And about an hour after that, the nurse called me to schedule the biopsy: next Tuesday. I’m having my spouse take the time off work to take me, so I can have an Ativan and Percocet beforehand, because endometrial biopsies hurt like a MOTHERFUCKER and the practices here don’t do any sort of sedation for it (except, I expect, in extreme cases).

And then it was time to go get my annual mammogram. Which unofficially looks fine.

But I am completely stressed out and honestly freaked out by the entire situation. The IUD was supposed to prevent this from happening. When they replaced my Mirena, they used a Liletta, which they told me was just as effective. If I do end up with a D&C and another IUD, then I’m going to insist on a Mirena.

If it turns out that I need a hysterectomy, it’s going to be bad. I am not a good candidate for abdominal surgery because of the ascites, so even though they might go in with the idea of doing it laparoscopically through my vagina, they have to keep the option of cutting me open, well, open. So I don’t know what’s going to happen there.

Also going on next week:

  • Cats going to vet on Tuesday evening. Annual checkups, but there’s also been some behavioral problems I want to talk to the vet about.
  • Intake appointment on Wednesday with what I hope will be my new psychiatrist. My current one is not really working out, for the following reasons:
    • She completely blew off the results of the neuropsych evaluation I had last year, which means that she hasn’t been treating me for cPTSD/DESNOS.
    • The first question she asked at my last appointment (and this was the last straw) was about how much Ativan I was taking each week, because she doesn’t want me taking it at all or only when I’m actually having a panic attack (whereas I’d like to forestall said panic attacks and also since she disregarded my neuropsych evaluation, she probably isn’t aware of how good I am at masking both my depression and anxiety).
    • She only ever gives me a 90 day prescription for my anti-depressant and anti-anxyliotic, neither of which work particularly well for me.
    • When I have trouble sleeping, she’s only willing to prescribe trazodone, which is a really old anti-depressant which happens to have sleepiness as a side effect. And which can interact with a whole bunch of other medications I’m taking.
    • She won’t even consider putting me back on Wellbutrin, which worked extremely well for me because I had seizures while I was on it. The thing is, the Wellbutrin didn’t cause the seizure. I had a defect in a blood vessel in my left frontal lobe that caused the vein to burst–a subarachnoid hemorrhage, aka a stroke–with three seizures subsequent. I have not had a seizure since. I recognize that once you have a seizure the “floor” at which you can have them again is lowered, but neurology is on record as saying that if nothing else works, they would be okay with me going back on Wellbutrin as long as I stay on my anti-seizure medication (fun fact: Lyrica/pregabalin is an anti-seizure medication that also works on nerve pain!).
    • So I’m just frustrated with her and I want to fire her. But I can’t until I get a new one lined up for meds management, hence the intake interview at a practice that is not part of the big healthcare system here in Delaware.
  • Appointment on Thursday with my GI doctor to go over my labs and to try to figure out why I haven’t been feeling physically very well lately. Part of it is likely due to the bleeding, but my lipase numbers came back a little elevated, so I’m worried I’m heading into a flare.

And it’s so hard to make the right choices with food (especially salt and fat and carbs—i.e., anything that makes food taste good) when I don’t feel well. I’ve been trying to exercise but the ascites and umbilical hernia make that more than a bit challenging.

And the ascites and the bleeding combined are really contributing to the dysphoria I’ve had for the last 4 years around my body–or really, my whole life. I have always hated the way my stomach looks and now I don’t even have a belly button. My connection to being a woman was always tenuous, and then when I pretty much stopped having periods a big chunk of that dysphoria went away and now it’s back again in a really bad way.

I’m just feeling really frustrated and scared and sad right now and I hate it. I’m very glad I have therapy in the morning.