as always, we're complaining under the cut. tw for medical PTSD, mentions of medical procedures, personal/graphic descriptions of my fucked up little body, extremely privileged whining, it's worth it for the cat at the bottom tho
I am exhausted by the number of appointments I have. I've become the kind of person who has multiple appointments every single week. This week and next week are three appointment weeks, and those appointments always lead to scheduling MORE test/procedures/office visits.
I had an appointment with my urogynecologist. Given my history of neurogenic bladder and severe stage IV endometriosis, she's in agreement with me that it might be time to at least consider a bowel diversion, if not a total colonoscopy. This would be done in addition to a bladder diversion because self-catheterization has proven unsustainable and, frankly, dangerous for me to try to continue. I'll likely have a foley placed tomorrow morning that will stay in until I can get in to the urological surgeon, who has not called to schedule yet. I have the colorectal surgery consult next month and the neurourology consult a month after that. Just thinking about it gives me a headache.
I also have an EEG in a few days to see if the blackout episodes I've been having are epilepsy, and if it is, I'm not sure what we'll do since I'm already on a good amount of anticonvulsants. I have a feeling I'm going to leave that test with a migraine and no answers, which was exactly how the EMG/NCS I had done in my hand last Friday went.
Other things I've started include using a CPAP machine. I thought this shit was supposed to help you sleep better, but instead I'm waking up many many times in a two hour window, the pressure being pushed into my lungs is dislocating my ribs, I'm getting bloated from wearing it, and the pressure is coming out of my eyes and ears too due to a deformity in my inner ears called patulous eustachian tubes, so now my constant migraine is back in full force. I'm nothing but bloated and irritable as hell, but if I don't use it for at least four hours a day for at least 24 days a month, medicaid won't pay for it and I will have to pay out of pocket to buy the machine. My mother price checked it, it costs ~$1300 to buy the machine I have. I might just give up and give it to my brother, who also needs a CPAP but who doesn't also have EDS and is, therefore, not prone to ribs dislocating.
I met with my 4th electrophysiologist and that was a frustratingly and dangerously nonproductive appointment. He did not speak or understand spoken English well enough to be allowed to practice medicine in an English-speaking country imo. I don't give a shit about an accent, I don't think people need to "go back to where they came from" or that they need to speak English exclusively, but man it is so important in the field of medicine to be able to actually understand what your patient is saying to you. He had no idea what the condition I have even was, and he assumed I made all of these diagnoses for attention but would "humor me" and wrote IN HIS NOTES that I "insisted" on a holter monitor and tilt table test. I got these orders from Duke university, the closest university to me that has a genetic electrophysiology department and a dysautonomia clinic, both of which I was being seen at until Duke stopped taking my insurance. I was trying to tell this absolute worm brain that I was telling him what the top specialists GLOBALLY told me to have done, but I was just being young and attention-seeking I guess, I'm so dangerously angry about it, it makes my chest hurt to try and articulate just how badly this EP fucked it up for me.
I realized in the middle of a visit with my PCP on the 30th that I am not working towards a goal. Most people go to the doctor with the goal of Get Better Enough To Work, or Get Better Enough To Take Care Of The Kids. I don't have that. I'll never be able to hold down a job and I can't and don't want to have children.
I feel like the shittiest friend on Earth too because a good friend of mine only lives four hours away, but as much as we'd both like to visit, I have to schedule everything in my life around what's starting to look like a year packed with surgeries. I can't just pack up and go visit him, I come with medical equipment now. Between meds, splints, incontinence supplies, and the CPAP, I have to basically haul around a small urgent care center everywhere I go. I hate that I have to be planned around.
For a few wins, I do not have carpal tunnel, and when I had my A1C checked at my last PCP appointment, it was 4.9! Every doctor who finds that out informs me even their own A1C isn't that good because they like some specific sweet treat too much. My secret? No one has said they liked something that doesn't have dairy in it, and I've had a dairy allergy since birth.
anyway. I turned 26 just over a month ago and my beloved medical advisor turned 1 year old the same day. she's my birthday buddy :) it's weird having an Adult Cat in the house now, she's not the teeny tiny kitten that sneezed in my eye and gave me pinkeye anymore.
thanks 4 reading, besties. until my next frustratingly whiny and Packed Full of Info update <3
pictured: my big adult girl and medical supervisor 🥰