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Not Over The Rainbow Yet.....


taylortotmom
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Hi, all. For the new members unfamiliar with me- let me say. hi! I am a member with a non-POTS form of dysautonomia. I, like many of you, have had a long, winding road. Well, for 18 months I was on daily iv treatment at home via a port-a-cath- which I loved- UNTIL I got sepsis and nearly died last October.

Well, I lived. B) Had a rough few months and had to adjust to a non-negotiable gallon of Gatorade a day protocol combined with a pacemaker, Florinef, Zebeta, as my treatment for the dysautonomia. And I started doing well- amazingly well.

My kids and I had an AMAZING summer- the best I had felt in YEARS!!!!!! I even made it to Virginia which was a 12 hour one-way car trip. This was almost unbelievable for me. I still have symptoms and I am aware of every choice I make- believe me. So, I don't mean to imply that I was "healed" by any measure but I was far more functional than I had been in YEARS.

And then....... I was rushing around putting wet clothes in the washing machine and fell as hard as you can and broke my left shoulder. OUCH!!!!!!!!!!!!!!!!!! :blink: My mom is here helping thankfully. So, just keep me in your thoughts as we encounter my yearly "fall" fiasco. :)

Stay well, everyone! :D

Carmen

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Thanks, everyone. I had contemplated writing in about how well I was doing a few weeks ago-lol. Actually, dysautonomically speaking, I have been doing well. So, I would like to give some encouragement that it is possible for things to get better (not perfect, but better) with the right combo of meds and monitoring of lifestyle (stress, heat, fluids, etc.) Hang in there everyone,

PS I am still writing songs and have a couple about to be recorded :P)))) It is quite exciting and a ton of fun :)

Carmen

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