So today was my last day at the treatment center. I spent 10 days at the center, but I am including the weekend as treatment days since I still did my treatment plan those days. Unfortunately, I was glutened last night. I’m pretty sure it was from some sweet potato fries I ate. I noticed they tasted really good… but also unusual and extra crispy. Today I woke up really worn out and my stomach wasn’t acting right. I chalked it up to doing treatment yesterday, then going to the mall (used wheelchair) while we waited for dinner, and then going out for a hour and a half long dinner with some fellow POTSie patients and their parents. Typically, I’ve been resting at the hotel for awhile after each session before doing more. As I sat in the chair at the treatment center, all nice and reclined with my feet up, I noticed my stomach didn’t flatten how stomach do when we lay flat. In fact, I noticed that I looked like I was expecting.
Then it all clicked together. “I’ve been glutened!!” Our waitress was awesome about my food issues and supervised (seriously stood there and watched) the staff while they cooked my food, but then I added some sweet potato fries on to my order through a different server. Some restaurants coat their sweet potato fries in flour to make them more crispy. I sometimes do this at home with potato starch. I suspect this is the case with the restaurant last night. I was pretty happy this rough day wasn’t completely a result of overdoing it yesterday. I think the overdoing it certainly didn’t help, but the gluten made everything today much rougher. Note to self: do not overdo it and be suspicious of really delicious restaurant food. When you always have to order everything with no sauce, no seasoning to cater to your intolerances… food at restaurants tends to be bland!
Not very surprisingly, my heart was not having the whole “work with the autonomic nervous system and rest of the body” thing today. My screen looked like this on challenge level 2 (increases how easily I can get high coherence) reclined.
Despite the not quite ideal heart rate variability scores, I got my hand temperature to the 90s pretty rapidly today. I also started out the day with a higher temperature than last week. That shows I am somewhat maintaining parasympathetic mode outside of the tranquil treatment center. Yay. Eventually I got it all the way up to my goal of 96-97, coming in at 96.2!
Tuesday-Thursday went well with me feeling a tiny better each day. That’s the thing, some people want to instantly be better. I want to be better instantly, who doesn’t? However, I do not expect to feel better instantly. I think the fact The POTS Treatment Center was almost instantly able to start moving me in the right direction is amazing. Progress is mostly slow, and steady with a bad day every now and then. That is fine by me. All of my meds, other treatment plans, and all my own random ideas to get better were unable to consistently move me in the right direction. This treatment was. Here’s what my heart rate variability training looked like somewhere along the way on days 8 to 10:
Yesterday was a pretty good day, but like I said I overdid it. It was worth it because I got to meet and get to know some fellow POTSies going through the same treatment as I am. One of them, Anna, is the 15 year old version of me in terms of her personality (and being adorable). Her Mom is a lot like mine, so it makes sense we’d be similar! The other girl, Leah, was here for her 8 week follow up. She was able to walk around the mall and is able to exercise. While she isn’t “cured”, she is much better than she was 10 weeks ago. It’s very inspiring to see her doing better than where she started and knowing someday, that will be me. I loved talking to these girls and their family members because everyone just “got it”. Mostly us girls talked so much that the family members ended up having their own conversation. Sorry guys!
Something pretty funny happened during dinner. I’ll share in case you didn’t catch it on Facebook.
I’m going to write a post at a later time about my thoughts about The POTS Treatment Center overall. I’ll spare you a little of the suspense and let you know I think it was a wonderful decision to come here and I’d recommend it to fellow POTS sufferers. Although I have a ways to go with my symptoms, I am leaving the center with hope, a feeling of control, a doctor I trust, and NO COMPRESSION STOCKINGS!! It’s pretty amazing to feel in control, even on a rough day like today. I will keep working, every single day, at home and will come back in 8 weeks with my Dad for a week long “tune up”.
Now I am going to go chug water to try and help my body deal with this gluten that has been put into it and hopefully go to bed early. I want tomorrow to come quickly because I can’t wait to be home and see my fiance tomorrow!