This will be another edition of copy+paste e-mail that was sent to my awesome natural doctors.
As a heads up, this e-mail isn't filled with sunshine and lollipops...instead sarcasm, which is sometimes even better.
So in the last 10 days I've managed to sublux my neck and end up in the ER twice. I'm on a roll.
Yes, you read it right...I went to the ER again on Friday aft.
Despite trying pretty much everything, the killer migraine from my subluxed neck had gotten a lot worse by day 4 and I was pretty much incapacitated.
I was attempting to get ready to go into work for 3hrs, and didn't make it that far. The dysautonomia started acting up like last time, except my HR would go crazy any time I changed positions. It took me 4 hours to grab a shower and get dressed...I kept having to lay down and take breaks. It was like having the worst hangover of my life x's 10.
Before I decided to go, I talked to a few EDS friends to make sure I wasn't being a hypochondriac about it and was glad to know that I was pretty sane. Only one bendy friend said she wouldn't go, but then when I re-phrased the question, and asked her if she'd go if she were living in Canada where she wouldn't have to pay $15,000...she told me to go. Thank you Canadian health-care.
I went in with my last ER report and some of the dysautonomia info from the EDNF conference...They got me started on fluids right away, and some other IV drugs that were suppose to help with pain and messed up stomach. I asked for the IV to be put in my hand so I could move the rest of my body to avoid dislocations, and the nurse put it in my wrist. Hahaha my wrist started dislocating after 15 min, and I couldn't put it back in because of the line. Awesome. They were also out of beds, and didn't really understand no matter how I explained it, that sitting is the worst thing I could do for myself, and it would affect my entire body. They thought since my neck was supported with my brace that I was fine...So I spent almost the entire 6hrs in a chair and being moved from place to place. I wasn't allowed to lay on the floor either :( The pain meds didn't really do anything, and all that sitting made it worse. My super-powers were getting low and it got to a point where I ended up crying because everything hurt so much. This girl doesn't cry over pain, and hasn't since age 6.
My ECG came back normal, but I think it's because they had me laying down for about 15min before they did it. Right after I got up, my heart went crazy again and anytime I changed positions after that. I let them know but who was I kidding, I was just a patient.
The dr. was a bit of an ass. I'll give him 50 points for knowing the basics of EDS, but other than that he was useless and wouldn't listen to me. He didn't know anything about autonomic disorders esp. with EDS, and wouldn't let me explain, or read any of the info I brought because he had a god complex. He then tried to refer me to a rhumeatologist after I told him they would be useless to me and that I've gone the natural medicine route.He thought I needed x-rays of my neck, after I told him they'd come back normal, just like the millions of other x-rays, and scans I've had. Guess what? They came back normal, surprise!!! He said there wasn't really anything he could do, didn't know what to do, and sent me on my way when the fluids were finished. He did say that the gj-tube was a good idea and would help a lot.
So.......I ended up leaving in worse shape than when I went in....awesome.
As far as meds, I know they gave me Gravol (IV) and Advil (in a yummy pill that needed to be chewed and swallowed).
I have no idea what the other two IV meds were, I can't read the dr's writing on the report. They were kind of useless anyway.
2 days later, and I still don't want anything to do with food, I'm not hungry at all, but am forcing myself to eat. Never, thought I'd say that...
My neck is still crunchy, feels unstable and I'm on day 6 of migraines (which is finally starting to feel a bit better).
That awesome new sleep pattern that we just got started has been thrown out the window. I've been wide awake at 4am for the last two nights. Gotta get back on it...
The one benefit of that epic failure of an ER visit, is that I'm going to use it as ammo. to get the gj-tube surgery moved up asap. At least when it's done, getting fluids, electrolytes and food in me shouldn't be a problem, and the ER visits will hopefully be non-existent.
I'm not sure if it's the weather change, but EDS and dysautonomia has been horrible to a lot of my bendy friends lately. There needs to be a way to do body transplants...one day...
That was written on yesterday afternoon. As of now, I still have the migraine/crunchy/unstable neck and am still "POTSy". Who need to run the track, when you can just stand up and get your heart pumping like mad that way. Running is over-rated.
"To be kind, honest and have positive thoughts; to forgive those who harm us and to treat everyone as a friend; to help those who are suffering and to never consider ourselves superior to anyone else; even if the advise seems rather simplistic, make the effort of seeing wether by following this you can find greater happiness."