The life of a Zebra and her dog Charlie

So where does the "A Zebra" part of my blog title come in?

It's common in the medical world for young doctors to be told "When you hear hoofbeats, think Horses NOT Zebras." Meaning when symptoms add up to a common illness, assume it's the common illness. The problem is, people like me who have uncommon illnesses frequently miss the treatments they need because they get the "brush off" from medical professionals.

I can't even begin to tell you how many times I've been checked for various forms of arthritis to explain my constant pain!

This year I switched primary care doctors.
   When I went to my doctor and presented him with a print out of a condition called "Ehlers-Danlos Syndrome" and asked him to check into it for me, he said he would not because I was stretching too far for an answer and I didn't need a permanent label. I'll be honest that it made me see red. The symptoms and all the images of hypermobile "tricks" I was seeing on tumblr, pinterest and google images were all things I thought were completely normal for everyone, and was starting to see were actually not.

I visited my friend J. M.'s doctor and he said "Looking over your file it's worth checking into. If you have it, you need support yesterday. You're already 27. The onset for this condition is usually unbearable during your early 20's and if you have it you need relief." So, that doctor sent me to a rheumatologist. I no longer see her because her office is so disorganized, but she said "I can tell by your elbows right this minute that you have hypermobility. Let's get you the once over and put you into physical therapy to regain 25% of your legs' use, ok?"

So I went through grueling PT in the hopes of improvement, only to see my muscle tone is so poor that it didn't help at all. I was sent back to the primary care who referred me to a geneticist.

I see the geneticist tomorrow.

You have to fight like a zebra if you are one. I'm kicking for an answer as hard as I damn well can. I want to regain my life and my zest for it. I want to be independent again. I want relief from this constant pain.