I’m tired of pretending that I’m okay. I fake it in front of family and friends. I don’t want people to get upset and that’s totally on me. I guess I’m a people-pleaser after all. I mean, what can happen if they know? I just think that it might be worse if I keep hiding it from them. Then there’s the fact that I am having a hard time facing new diagnoses and symptoms. There’s no one to talk to about this either. I suppose a counselor may be in order.
Having CRPS is one thing, but I’ve been diagnosed with several rare diseases and now have a plethora of other “minor” diseases like fibromyalgia, diabetes, and kidney disease. I was just diagnosed with Dysautonomia and Lymphedema, so that sucks. My life expectancy just took a nose dive and no one understands.
It’s also getting dangerous to go places on my own. Dangerous because I can get hurt if I fall, which I do often and I certainly can’t depend on the kindness of strangers to help me. I’ve broken bones in both feet at the same time, twice, yes, twice. The last time I broke my CRPS leg too.
How do I make this transition from playing fine to letting people really know what’s going on?
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.