Today, my first day back at The POTS Treatment Center for my follow up went pretty well and I’m having fun seeing lots of my Dad. Here’s the gist of it…
After traveling all day yesterday and getting settled in, I am really worn out today. From my home to the hotel room, it was about 9 hours which is much longer than I ever dare sit upright. When we got to our hotel room, I found it only had the comforter that drove me crazy half the trip last time, and no spare blankets in the closet. I called the front desk and explained I was wanting the “lightweight, but soft and sort of fluffy blanket” I’d had last time. The guy showed up at my door with two blankets — he wasn’t sure which was softest… or.. erhm.. fluffiest. HA! Talk about service!
My throat and armpit lymph nodes were having a rough time of it last night… like really bad. Today they’re doing a bit better and I was able to wear the dress I wanted to even though it touches my armpits. They’re sore, but not sore enough for me to go for my first day of follow up treatment in my fiance’s t-shirt!
This afternoon, Dr. Kyprianou happened to be in the lobby as we walked in. I was welcomed with hugs and was happy to be able to introduce my Dad to her right off the bat. Then, in walked my POTSie buddy and her Mom from when I was here for the initial 2 weeks. It was a happy reunion. In session, the strain yesterday put on my body showed in my numbers at the center today compared to how I’ve been doing at home, but that is to be expected. With a beta blocker in my system, my heart rate sat at 105-110 just from my feet being on the floor while sitting. On top of this position being really uncomfortable for me on a rough day, the software was throwing out all sorts of errors from my zany heart rate changing so rapidly. I suggested moving from the straight back chair I was in to the recliner with my feet down. This usually helps at home because I can recline back a little bit but still have my feet on the floor. The seating change stopped the software errors and made my heart slightly more stable, however, it didn’t help with my comfort level and my lymph nodes started hurting pretty badly. I finally realized the staff are not psychic and spoke up, explaining today just isn’t the day for feet on the floor training. They were cool with that and were very encouraging for what I had accomplished.
The doctor wasn’t real sure right off what to do about my lymph node swelling, fevers and severe fatigue that have been landing me in bed and preventing me from fully enjoying my receding POTS symptoms… and sometimes even triggering POTS episodes. She said something is up with my immune system, but didn’t have ideas right off the bat to strengthen it that I haven’t already tried. I know she’ll think on it and come back with ideas. She always does! Lots of other doctors have agreed it is immunologically rooted, but none have figured out the puzzle. I’m hoping she’s the one who will. She also thinks perhaps, as my autonomic nervous system continues to improve, my immune system will too and the lymph node/fever/fatigue issues will go away.
While I was in a session, a member of the staff hooked up my Dad to the biofeedback equipment to explain to him how it all works. His numbers were awesome for anyone, but especially awesome for someone without practice… and whose daughter was standing there laughing. His “stress” measure (the 1.00 toward the bottom) is as low as you can possibly get and his muscle tension was quite low as well. What a show off! I’d have like to have had him hooked up when he saw the prices one must pay for natural, organic food at Whole Foods.
I can’t wait until tomorrow because I think my numbers will be much better. The day after a big day is always difficult for me, and my body (as much as I know it’d love to) can’t make exceptions just because I’m in Dallas! All in all, I’m better off compared to my first day of treatment when I came to Dallas in July.