Thursday, August 11, 2016

8/11/16 Awaiting

Missed the call from my rheumatologist for my lab results 😑 my phone was on vibrate (idk why it's never on that unless I'm in an appointment) and by the time I heard it I was shoving ivs in my fridge and sitting on the floor. I got to the phone literally in time for it to stop ringing. He left a very kind message though! Too call him back.) I did right away but unfortunately he was in with a patient already... Now to sit and wait and wonder. (He was suppose to be giving me yet another opinion on wether or not I truly have Sjögren's  Syndrome or another possible autoimmune disease... As I have Lichen Planus and One Rheumatologist years ago that's very well respected in the valley diagnosed me With Sjögren's when I think when I was 20? Maybe younger? Then I saw a million rheumatologist (who scratched their heads) and went to another amazing rheumatologist who is also well respected and he said nope, I did have both autoantibodies for Sjögren's (A&B) but my inflammation in my blood was normal? I was on my immune suppressants for a long long while at that point... And my ANA is always back and forth.) so since then months before being diagnosed with POTS I have let it all be! Of course thinking its POTS but now my other docs have been wanting a definite answer. ... (So they can better treat me as a whole) I assume from experience something is up with this new doctor and my labs or he would just have had a nurse call me.... (I had these tests ran maybe two months ago) and I remembered Monday, "omg I totally forgot I had them ran!" So much blood work I got extremely POTSie, idk how I forgot that one!! it was before my feeds fell apart and then my tube fell out, the virus, the surgery, the crap I endured last week. Now I'm back. I'm taking a break in retro spect. But you can't just let everything fall apart at the same time. I have let so many tests and stuff just go away. I am ignoring them now. I hate my feeding tube but I'm like as long as it works I am good for now (that's how sick of being sick I am)... On a brighter note I was just singing and swaying and Wrecker danced with me... He will come and dance with me it's hilarious & so sweet but hey we were happy! I have no notes or singing talents, for sure.
I painted my finger nails!! )that's big for me these days. I decided so what if they get all chipped and icky? I should do something for myself once a week! So I am attempting to paint my nails weekly now. Toes get painted but I don't do fingers due to all the hand sanitizing and washing I do with all my medical care. (But hey if it makes me happy) . XO, HUGS, & LOVE-Chelle