We Have a Diagnosis!
For those of you following my blog posts for a while, you may know that my daughter has had debilitating fatigue that has grown increasingly worse for the last three years. She has dropped out of all activities, grades have plummeted, we cut her class schedule down to two classes… you get the picture. Not a life you want for your child.
We finally got a diagnosis on Thursday! POTS. I know, not a great acronym, but you get what you get. It is Postural Orthostatic Tachycardia Syndrome. Plus, she has Ehlers-Danlos Syndrome.
So, that’s all just FYI.
What I want to talk about is her reaction to the news.
Frankly, I was expecting a diagnosis of Chronic Fatigue Syndrome. Dr. Lapp is a Chronic Fatigue and Fibromyalgia specialist.
But in addition to fatigue, her symptoms include flexible joints.
Velvety soft skin. (It really is! I pet her like a fine velvet clutch, and use the words, “my pretty”.)
“All those symptoms sound like I am a super hero!”
It sure could have been a huge “poor me” or flat out fear.
It is incurable.
It might not ever get better.
She might not be able to get through a whole day of school. Or college. Or work.
She is tired because her heart races like she is running a marathon16 hours a day. (I did jumping jacks for two minutes just to bring my heart rate up to what hers is sitting.)
She will have to change the way she lives to follow the protocol.
And she feels like a superhero.
Once again, she is my role model on how to think like a superhero.
Her reaction has greased the way for my mind to focus on the success rate in bringing POTS teens back to a functioning energy level. (60%)
I keep marveling that the first step of protocol is to eat salty snacks, drink sports drinks, and put her feet up. How easy and painless is that!
You go, Supergirl! I am blessed to be your Mom.
What’s one way in your life you are like a superhero? (Try taking the thing that seems the worst, and see if you can flip it to be your superpower.)