Five Rare Diseases & a Dozen Others

CRPS combined with EDS-3, POTS, PNES, DID, and Dysautonomia, to name a few of my medical conditions, I’m struggling.

So, after having such a great time swimming, I hurt myself and couldn’t swim for months (Yes, I gained the full 14 lbs. back.). I pushed my muscles too far and ended up with new pain in my thighs. After months of trying to figure it out, and lots of different doctors, I found out it’s my nerves. I go to my new neurologist again tomorrow, so I’ll get more information. It’s embarrassing though because the last time I was there he diagnosed the Dysautonomia, and I had a seizure and fainted in his office on the way out. An ambulance ride later, I was told it was the POTS that made me fall.

Well, I’ve gotten pretty used to falling. I was just glad I didn’t break any bones this time. I did dent the front of my brand-new refrigerator recently.

So, I’m frustrated and there’s really no one to talk to about how I feel. I feel weaker overall and it’s kind of scary. I swear I’m just going to stop going to the doctors because it seems that every visit, I get diagnosed with something else.

Here’s where the fear is (Again, I see my neurologist tomorrow for more info.) I’ve read in several places that once a person is diagnosed with Dysautonomia they have five to 10 years to live. Well, I intend to beat that! I have way too many things I still need to accomplish in this life and I’m not leaving my kids without a mother.

I really hope it’s that easy.