I don't think people understand just how much any kind of physical activity can knock an HKPP patient flat. What's remarkable is at times it is a delayed reaction, so I can get through a day of heavy activity such as traveling to Jackson for renal clinic (an 8 hour round trip), but my worst moments are the following days. If you're familiar with HKPP, you know this trigger is called "rest after exercise", and it's a doozy. It also never helps when it's insanely hot outside and insanely cold inside, which was the case here. Fluctuations in temperature can result in serious paralytic episodes. I know because I've had them. This condition is painful, frustrating, and complicated, and I don't always cope well, but I try. I am very lucky to have some wonderful friends on Facebook and elsewhere who follow my journey and keep me encouraged with their love, prayers, and well wishes. I'm so grateful to them all.
Next renal clinic is in March, if I can find the funds somehow. The hospital has informed me that I am not eligible for financial aid now that I live where I do (recently moved), so I might be in trouble. If I absolutely cannot handle the cost, I will discuss my options with Dr. M. I hope something will work out so I can continue to go to Jackson.
The great news is that I don't have Hashimoto's Thyroiditis. I know several people with HKPP who have it, and it would have explained some of my symptoms, including the low D, but my numbers were normal. Renal clinic in Jackson may have very well done these same tests, but I don't recall, so I wanted to make sure to rule it out. I'm glad I don't have to think about it anymore.
I have a Keveyis update. It will be posted in the next couple of days.