Taking a hiatus

Hello Fabulous Spoonies!

Hopefully by now you’ve heard the newest clip I’ve put out about taking a hiatus for a bit. I’m really struggling with pain and depression right now, and am waiting to have some tests done.

I have been waiting over a month for one very important test, so you can imagine what that does to a person’s psyche. If this test shows nothing, I have to schedule another one, down the line and so forth.

I have medical PTSD from years of not being taken seriously and then literally almost dying from endometriosis rupturing my appendix and sticking it to my abdominal wall. Also lately from being diagnosed with what I like to call Schrodinger’s MS, bc one doctor swears I have it, and another says “nah, let’s wait it out, it’s most likely conversion disorder (a diagnosis I’m fine with by the way. It has a huge stigma but it’s a real disease with *eh* treatment), go see your shrink.

Also right now, as if I didn’t have enough going on, my pharmacy and two of my doctors have decided to just f**k up my most important medications. One got completely canceled somehow two days after I saw the PA and told her I was still taking the damned drug that keeps my endometriosis at bay! And the other was inputted incorrectly by my doctor’s nurse because she’s too interested in everyone’s personal lives to do anything right.

So I call the daytime phone number for my GYN, like ya do, and explain that my medicine got canceled, could they please check my chart and send a script in PLEASE. “Oh yes we can send one in for birth control, no problem.” Me, trying not to yell:

“not birth control, endometriosis. If you put it for birth control my insurance WILL cancel it.” “Oh, why’s that?”

“Bc I don’t have a uterus.”

“Oh...OH, IT SAYS RIGHT HERE IN YOUR CHART, HYSTERECTOMY. DID YOU DO THAT HERE WITH US?” (Are you f**king kidding me I want to slap this dumb b*tch through the phone)

“sure did! So I take 3 5mg pills per day. Got that?”

”yes we will send in for your birth control, thanksby.” *click*

same day, I call my GP to get my gabapentin upped to two a day, like it should be. This is done easily with the doctor, but the pharmacy gives me problems...they only give me a bottle with 30 pills 🤷‍♀️🤦‍♀️😡

two weeks go by

Hubs comes home with a flat box with little foil circles in it. I recognize this...it’s f**king BIRTH CONTROL. I call the pharmacy. These pills are a microdose of what I should be taking. At this point I’ve been out of my endometriosis medication for a month and one week. I would have to take FORTY THREE of these pills to make ONE dose of my medicine. I am not thrilled.

I call the pharmacy to see whose mistake it was, but in my heart I know already. So I call the on-call doctor at my GYN clinic. She calls back within 2 minutes, and has my Rx fixed within 15. That woman was an angel, I swear. And the night-time staff was so nice.

The next morning I get several calls from my GYN doctor’s nurse. She basically blamed the whole snafu on me, saying they didn’t know what dose I’d been taking. But when I last saw the actual Dr (not the PA, who was very kind but apparently overworked or something), she told me if I needed to go up from one pill a day I could (the pharmacy had been over-filling, so I had like 4 bottles of pills) and if I needed a refill to let her know. Well, I was going to let her know, but the PA said “are you still taking your endometriosis medicine?” And I said “yes” and she said “ok good” and then immediately said “we should do a transvaginal ultrasound if they don’t find anything with that bladder scope”, and every word I knew flew out of my brain, because those SUCK.

Usually they ask for dosages, so I figured they had the correct one from the med list I gave them. 🤦‍♀️ But she basically blamed everything on me and then abruptly hung up on me. This is my favorite doctor. I NEVER should have said it was ok to see her PA. Something always goes wrong when I don’t see MY specific GYN :(

ugh, anyway. I haven’t wanted to put the actual words out there bc it feels spoopy, but I’m having a cancer screening bladder scope on 3/10. I have had bloody pee for a few months now. My cytology was negative so that’s a good sign. I’m going to be hopeful for that.

My doctor was very cocky though saying “you don’t have cancer. We’ll look for it, but you don’t have it.” He didn’t say “it’s extremely rare in someone your age”, he didn’t say “it’s highly unlikely”, he said “you don’t have it”, like he was daring me to have it. And then my mom was like “oh, you’d be surprised”, like they were both hedging bets.

I know what she meant—my body is a medical anomaly...I’ve had many issues I was “much too young for”...but it was just a very odd moment, sitting there arguing that we’d find cancer. I piped up with a “let’s hope not!”, but I was having such a severe hot flash I could barely move or speak. I’d been having it since before they came in. Mom had been putting cool paper towels on my head and neck, because she is an angel sent by God.

So anyway, the big day will be here in three days. They say I’ll be able to see what’s happening and I’ll know the results, but who knows. Here’s to hoping—for what, idk. I really don’t want another transvaginal ultrasound, but I also really don’t want to have bladder cancer.

Unfortunately I am a very seasoned patient, though...so if my getting cancer keeps it from happening to someone else somehow...idk. Can I feel that kind of vibration from the universe? I’m not making sense...seroquil is one hell of a drug.

Stay fabulous, my Spoonies. ❤️