I have two rare congenital disorders, called Ehlers-Danlos Syndrome and Thalassemia (minor) With the Thalassemia my red blood cells are malformed, the hemoglobin cannot carry the iron so supplements aren't an option. Too much iron in the blood stream and I'll go toxic. This was diagnosed at birth. I was such a sick infant, they literally showed me to my Mother, flew me to another hospital, gave me a transfusion and kept me in an isolate for days and days. My Mom didn't even get to touch me until I was out. Since filtration of the blood is more difficult my spleen is always a little enlarged. (No real biggie, I don't poke back there too much.) My immune system is a little compromised by the anemia but what really doesn't help is the next paragraph.
The Ehler-Danlos wasn't diagnosed until I was about twelve at the Mayo Clinic. But the freaky nature of the disorder had been on display for years. Many broken bones, multiple joint dislocations, I could clasp my hands behind my back and then bring them all the way to the front with my hands still clasped rotating my shoulders nearly out of joint. I was the school yard circus show. With Ehlers-Danlos comes some heart issues, A Mitral Valve Prolapse that gives me supra-ventricular tachycardia and premature atrial contractions. (Not going to have a heart attack but I can't go a day without meds either) It affects my bowels, my skin (scar easily) my teeth, my uterus (when I had one) veins, arteries, and of course joints. My Mom says it should be called It Sucks Syndrome. My knees, hips and shoulders have been primarily affected. I've had one knee surgery to tighten my left knee from all the dislocations. Most recently, during my Uretal Reimplantation after The Cancer, the surgery team dislocated my left hip. If I'm not careful I can do this stepping out of a car wrong. As an ED patient grows older certain things need to be kept under surveillance. There are certain types of ED and I cross over into two, one of them being a more dangerous set. This means I am more susceptible to a Triple A, an Abdominal Aortic Aneurysm. I am lucky to have such wonderful Docs that care and keep up with new techniques. There have been times in my life when I have gone to the ER (I was younger) when the Doctor had to leave the room to look up my disorder in the DSM.
To the pain. (If you thought Princess Bride, POINTS!!!) Ehlers-Danlos brings a lot of pain. Mine focuses mainly on my left leg, where most of the trauma has been. Sometimes it can be the whole left side of my body. It can be for just a few days, a week, a month. The truly, truly frustrating part of the pain (aside from having it pure and simple) is how it interferes with life. Function ceases. Activities cease. One thing about sharing this information, letting people know about living with such disorders, is that what a disorder it can make of your life. The feeling of embarrassment does not go away after years of practice telling people you can't go to a function because you haven't been out of bed for days.
The goal of this post is to share information, not only on the two disorders that affect my life, but that affect others out there as well. National Rare Disorder Day is February 28th. I'm a mutant, and my Mother says so!
Now, to the love. I have been loved so much, and had so much care taken of me. It is immeasurable, and impossible to repay. Thank you for always knowing why, and even if you didn't, you never asked.
Bonus Blog Round: When I type Thalassemia it asks me to correct to Tallahassee.
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