Since Dysautonomia is literally kicking my butt. Again. I thought I'd take the opportunity to show my new treatments IVIG, this is new for POTS. It's truly the closest thing to actually treatment I have. However no answers are clear as to why... I have autoimmune issues and now mast cell issues... Which came first the chicken (POTS), or the egg (immune issues). We don't know the link. We just know there is one.... And it's rough. It hasn't been an easy decision for me to make. But the fight must go on... This is what my days have been filled with for two days... Dysautonomia awareness #1: Harsh Steroids for side effect taken with a glass of milk & now to drink lots of water (just to combat side effects of the next two days) Check. Dysautonomia awareness #2 take another handful of daily morning medication & Tylenol (to combat side effects of treatment) Dysatuonomia Awarness #3 access port. Dysautonomia #3 Infuse IV benedryl and a Bag of fluids. (To combat side effects of treatments.) Dysautonomia Awareness #4 finally infuse IVIG for hours, pray for healing, & no side effects. Dysautonomia Awareness #5 rest, eat, at hour 6 the side effects will kick in the worst for me. Dysautonomia Awareness #7 much more fluids and more benedryl and Tylenol. Dysautonomia Awareness #8 A handful of pills nightly, with an extra harsh steroid to combat side effects of the day. More water. Dysatuonomia awareness #9 staying up all night to run a 500 ml bag of dextrose Saine by gravity (no sleeping when running an IV by yourself via gravity... You might bleed out. And we all know I don't got time for that. Plus I have POTS my blood doesn't resupply well.)
next day.... Dysautonomia awarness #1wake up early run another bag of saline. Predose with benedryl, harsh steroids, and Tylenol. Dysautonomia Awarness #2 take a handful of morning medications. Dysautonomia awareness #3 sleep. (Because I was up all night running IVs.) Dysautonomia awareness #4 beep! Pump alarm... Hey I'm finished! wake up, deaccess port. Dysautonomia Awarness #5 moon face. (I am pretty sure tonight I have gained ten pounds of water weight.) Side effect of steroids. The day went very well. I even got dressed and left the house. But just when you need a sticky note, one appears... #faith. I had a good ending to a rough treatment. Side effects still continue but I think I am okay. Never give up hope, trust, & believe in good things to come! Go climb that mountain. Love you all -Chelle
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