#TBI Life: Holiday Hell 2024
Sing it again! Because it was just so awesome the first two times!
For y’all who have been following the tales of my big car wreck and the holiday hell that ensued in its aftermath, today I’ll give you a glimpse of how that all works 23 years later. Granted, we’re talking multiple TBIs later, not just the one I acquired in 2000. I’m dancing, prancing proof that, once you’ve had one TBI, you’re far more likely to acquire more.
Today I am finally starting to regain enough momentum to pop my head up over here, after having my butt whupped by getting Covid right before my birthday, through Christmas and out beyond New Years, as well as:
Yet another appointment with my PCP on January 3
The contrast brain MRI on January 5
A whole weekend of reapplying for food stamps under yet another time crunch where I was incapable of getting the paperwork I needed because of governmental shady, shifty shenanigans.
The sleep-deprivation and strobe-happy EEG last Monday
The mammogram on Tuesday, which started out with a mad scramble to re-write my DHS letter, reorganize the paperwork, and zoom into the hospital to pick up the letter from my PCP which came through at the last minute—woot!
(Dobby got to be freeeee on Wednesday! Twitching & drooling ensued.)
Thursday’s fasting bloodwork, followed by the normal double-whammy of seeing my neuro-chiropractor and having my TMJ splint adjusted, which resulted in the standard uptick in sleep-seizures when I came home to crash out. At least I didn’t bite my tongue.
Friday’s errand day/grocery shopping (customary) in a snowstorm (not customary).
A weekend of tuning out the world. I drafted the Dark Moment of my NaNoWriMo project. Woot!
Applying for the second time for heating assistance because right now, all my living and medical expenses are going on credit cards that I can’t afford to pay off after I lost almost half my income in November. I have no idea why they didn’t process my application when I applied for heating assistance back in November. They just sent me the same application again. So it’s filled out and mailed in. Again. *pant pant pant…* Woot. *pant*
A gazillion emails and phone calls about the results of the previous testing and what that means for the future.
Scheduling and beginning to prepare for the next test: a continuous 5-day EEG in the hospital. Hoooo boy. That’s gonna be another strobey, sensory-overloading adventure on steroids. I hear I’ll come out of that with a bunch of skull sores. It’ll be in February. Up in Missouri again. At least I won’t have a 22 hour mad scramble to find someone to take me up there this time.
Tomorrow and Friday: normal weekly medical appintments and errands in the hopes that the ice storm doesn’t come earlier than anticipated.
So there ya go. That’s been my last 2 weeks.
About this latest appointment with my Primary Care Physician…
It was supposed to be a simple annual wellness exam. For some inexplicable reason, they billed my flu shot to Medicaid but not the exam. No one knows why. Whatever. Somebody’s handling the $200 bill now, and it’s no longer me—
Oh, I stand corrected.
They just billed me in paper today, which means it’s back in my court, even though everybody agrees I should never have to pay for an annual wellness exam out of pocket. Joy. This will mean more phone calls and hours on hold and being transferred around with nobody’s right hand having a clue what anybody’s left had is doing, much less what their butts are up to. (Oh, you missed all those shenanigans? Those are over on Notes. But hey! All the gorgeous advent tea calendar adventures are on there, too, and that adventure was 25 days of nommmmm.))
Well, no matter what my latest PCP appointment was scheduled for a year ago, what it ACTUALLY was: me catching my new doctor up to the past 23 years of medical crap I’ve mostly managed and paid for myself. Or, you know…just gone without, like in the case of two decades of untested, undiagnosed, untreated seizures.
That was the topic of our previous appointment earlier in December—the followup to the emergency CT scan I had to do at the end of November to find out why my right eyeball spontaneously kicked my contact out, felt like it had been scratched (it hadn’t), gooped like it had a major infection (it didn’t), and the pupil was dilated. Considering all the seizure activity and a few new mini-stroke symptoms I’d been having during the fall? Yeahhhh…I was relieved to know that I wasn’t on the verge of having an aneurism and I had no tumors.
This has actually been a concern, because one of my uncles died too young from brain cancer (we miss you, Geno!), and I had a numb spot on the back of my skull all last summer. So I can now be Arnold Schwartzennegar:
As we set to work arranging the means to try to find out what the problem actually IS, that became my running joke for several weeks. Toldja, we develop a dark, often uncouth sense of humor down here in the Underworld.
Well, this incident at long last and hallelujah finally incited a PCP to send me to a neurologist. I’ve only had multiple doctors in the past two decades say—literally, multiple of them have said the same quote in response to me telling them that I have untreated seizures: “Oh. I guess since you’ve never been sent to a neurologist, you don’t need one.”
Uh…
Huh.
Yeahhhh, that would be why I’ve fired scads of doctors over the years. Especially once I had that second neuro-psych exam in 2020 that came back with: “Needs to see a neurologist. Needs to have seizures tested and diagnosed to find out what kind they are.”
Seeing as how there are apparently no neurologists in NW Arkansas who treat TBI and seizures, my doctor wasn’t really sure who to send me to. Since I moved here ten years ago to be closer to my parents so they could help me after TBI #2 and the Year of Chronic Seizures, nobody has been sure who to send me to. Even the big Brain & Spine department of UAMS down in Little Rock had no idea.
So guess what I got to do—while having all these eye problems, ever-increasing headaches, and worsening TBI symptoms uphill in the snow with my underpants on outside my leggings and my helmet caught in my shoulder-ma-pads cuz I haz Dain Bramage? (Thank you, Bob Nelson.)
I got to make a gazillion phone calls, spend hours on-hold and get transferred a gazillion times. Oh yeah, and battle yet another government agency doing shady, shifty stuff, which required—you guessed it. More phone calls and on-hold blathering specifically designed to make you tap out and hang up.
You remember how difficult verbal communication and processing audio input can be for me, especially when I can’t read lips, right?
The latest government agency hoop-jumping was such a fun time that it will require a post of its own. Did you know that DHS is making applicants for food stamps ask their doctors for letters that could push ethical medical bounds? Yeah, they were trying to force me to supply a letter where my doc pretends she’s a disability and occupational assessor.
(Spoiler: she’s not. She’s an MD. Period.)
(Spoiler 2: they won’t accept the letter from the ACTUAL disability and occupational assessor I worked with for 5 years because he’s not an MD.)
(Spoiler 3: The team I have right now is soooooo flippin’ awesome. When I tell you what that’s all about, hopefully I’ll have the final answer to if our creative, legal, and ethical solution worked. Then if you need to steal it, you can, too.)
Sorry this is so scattered. I started drafting this post last week but I’ve been so wrecked I couldn’t finish it. With every day that passes I have more and more stuff to add to the list, so I’m just gonna post this right now, even though it’s a sequencing nightmare. (Sequencing: yet another major TBI issue.)
We’ll get back to the original 2001 timeline as soon as I can muster up the Spoons to decipher what comes next. We were in January.
Oh.
Yeah, right around this time, 23 years ago.
More later.
I don’t even have it in me to hunt for a good song. Please send musical inspiration!!! Or humor. Snark drip-line needed! Thanks.
© 2024 Hartebeast