I just saw my neurologist today. It has been confirmed my scary high blood pressure was from the massive pain I was in. The pain was in fact a Dysatuonomia flare. This disease is so hideous and mean! Good news is my blood pressure is slightly low and I can start the process of weening off the medication to lower the blood pressure. I also get to go back on fludrocortizone a big treatment for my POTS. This week has been mentally rough for me. Last week they took me off a migraine preventative medication. I had literally every single side effect. It was literally giving me symptoms of Parkinson's disease and that was not fun. It was holding me down. Neuro also didn't have a "No" response to seizure episodes. They could be seizures... But we simply don't know right now. So this week has been slow and steady attempts to rebuild my health again. My tummy is not being so well. I have vomited several times this week, including some lunch today hiding in the car at the neurologist's office parking lot. Hoping nobody noticed. I haven't done that in well over a years time. Which makes me nervous obviously. The migraine medication was an appetite stimulant. I was afraid once I came off of it after being in a big dysautonomia flare my neurological gastroparesis would be worse. But we seem to be looking up. So hoping tummy gets better too with some time. My IVIG Gamaplexin is on nation Backorder. So all across the country are having to switch. If insurance complies I will have my scheduled IVIG infusions before Christmas (praying they do not make me sick. The last time I had infusions, they made me better and broke my cycle of misery... BUT changing brands can cause some issues.) I have been so frusterated with my body. Last night I prayed and then I opened Facebook to find this,
Not one but two donors are matching 150k this year in research. My heart needed that after this scary, frusterating, out of nowhere, flare up. That's the name of autonomic dysfunction. It is a constant battle and then some days it is down right terrifying! Praying I can keep pain levels lowered and mast cell issues can improve (all autonomic dysfunction). There have been some ups lately... Despite a big hospitalization, being in so much pain my body actually snapped and had to be sedated Multipule times... Many ER and a virus a.k.a a Dysautobomia disaster, Multipule doctor visits... An oh so much more. I managed to get an A in my class! Little victories to me are huge and I am proud! I could have easily quit so many times but Ipushed forwards instead in faith in God's plan.
.... One day at a time -Chelle
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