OK everyone knows bits and pieces, so I laid everything out from the beginning, according to my current understanding. I am really feeling overwhelmed, like where do I even begin. I am very grateful for all your prayers and encouragement; please continue that; I really need it!!
After the hard work of a literal team of medical professionals, I now have answers, diagnoses, and treatments. I finally know how and why everything works. One dx is still a maybe, but it was a call by the physical therapist and doc thinks it's probable without having tested for sure, so running with it.
Back in 2014, my husband and I were in a car wreck. He was turning left from a busy street onto another busy street on a turn arrow. Some guy coming the other direction ran the red without slowing down, plowed into the side of the car I was on going about 40-45 MPH, and spun the car around. Car was totaled and my MIL, after seeing the side of the car I was on, said I was lucky to be alive.
I had superficial wounds from auto glass on my right cheek and in my ear. Miraculously no glass got in the ear canal or in my eyes. That is a total God moment. But I knew head injury wise it was quite bad immediately. The ER diagnosed me with closed head injury (aka TBI) AND concussion.
Ever after, I had dizziness right away, needed to sleep a lot, and experienced cognitive effects that got slowly better over years, but I am not the genius I was; my memory is laughable, and I completely lost my musical ear. Cognitive therapist says I am mildly cognitively impaired and mild to moderately memory impaired. That's all from the accident.
The neurologist I had at the time patted me on the head and told me things would be fine. Years passed. I would write him every so often, and say, hey, things are NOT fine, please help me? Very little happened. I also can't drive anymore. My brain won't process traffic in 3D; very dangerous to have me behind the wheel.
Finally, last year, I was seen for a UTI in Urgent Care, and the PA said, OK, you have a UTI, what is this really about? So I told him all my symptoms, and he got me a referral to Neurology. The very helpful appointment scheduler put me with a new doc, a head injury specialist. And this began to change my life.
I started jumping up and down more and telling my docs I was basically disabled from all this and had been for awhile. My family and I contacted the county about this (and they have completely dropped the ball) seeking help. My doc and psychiatrist were like, we do not feel you qualify medically or psychiatrically for this help, but it wasn't up to them. And they started thinking about all this.
December 20th, 2017: doc sees me and diagnoses me with chronic respiratory failure, which I later discover she is justifying oxygen at night, which I have used for years to treat sleep apnea. However in February, everything started unraveling because I had low oxygen saturation measurements (sats) in the November hospitalization. The doc told me to start monitoring at home, and I discovered I had a very big problem. When the oxygen company's night study discovered the same big issue, it confirmed I needed to be on oxygen 24/7 and THAT happened.
So then everything started snowballing: pretty soon I had two new diagnoses of Raynaud's and way more concerning, Pickwickian syndrome which you can die of. If that was not enough, my kidney bloodwork starts coming back bad, and now I am trying to raise my GFR stat (the one that measures how well the kidneys flush) and keep my kidneys OK. And I am, this is pretty bad. I also started falling, which is how I ended up with a physical therapist, occupational therapist, and social worker through my insurance.
Add to this five major MH diagnoses and DANG.
So I am already completely overwhelmed, but we are getting back to the cause of why my body is deconditioned, the dizziness. PT and doc think it's Postural Orthostatic Tachycardia Syndrome or POTS. It fits all the observed phenomena. It is also chronic and incurable, although you can learn to live with it over time.
There. That's all the diagnoses. Treatment is: take meds, drink lots of fluids, eat a healthy diet, and follow the exercise prescriptions of the physical therapist. Any actual recovery is gonna take a long time, while fighting to keep the situation stable and not worsening.
I am not going to die of any of this (hopefully), but it will be difficult to live. Please keep me in your prayers. <3