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Wednesday, February 1, 2017

The Three Words that Changed My Life

In September I had one of the most important medical appointments of my life.

Zebras are the mascots of rare conditions

But before I get to the diagnosis, lets get a little history.

As a child I remember many things about my body and health. Most importantly I remember not following my passion for dance into a career, though I wanted to, because I didn't think my body would make it and I didn't know what else I would do. I remember always feeling like my body was old and often saying I wished I had a new one. I remember spending most days in the nurses office after lunch due to stomach pain. I remember spending more time than I would like sitting and waiting on the toilet (sorry TMI).  I remember fainting more often that I would like. Once at my cousin's high school graduation, once at the flea market, once at home alone I tried to get to my room in time but ended up hitting my head on the way down. I remember when I didn't faint I often felt like I might, especially when I had to wash the dishes, and of course my parents didn't believe me, who would. I remember nearly fainting during a track meet, it was my last. I remember frequently hyper extending my knees during athletics. I remember being very flexible and trying out tricks, which included comfortable ways to sit that grossed my mother out. I began to experience shooting pain from my hip to my feet or from my shoulder to my wrist that seemed to follow my menstrual cycle. We visited a doctor who said it wasn't arthritis and that was the end of her help.

As I entered high school I started dancing. Flexibility came in handy here and I enjoyed it. I started experiencing very sharp pains when we would do across the floor exercises with turning or leaps. These took place in my ankles and in my neck and were scary as well as painful. I also started having to take my shoes off in class after practice because one of my ankles/feet would swell and my arch would drop. I also remember really working on not hyperextending my arms when we were supposed to have straight arms, which was hard. One odd incident that freaked my out happened in  a crowded hallway. A very big and tall football player was heading right toward me and I had no space to move so I quickly moved my shoulder to close my chest, and my sternum popped, quite painfully I might add.

In college the fatigue hit. I was on my college dance team and I had trouble getting out of bed and feeling faint. I had a weird partial faint during that time frame, but the nurse on campus assured me that my short stature was the cause of my fainting.....yeah she did. Around this time the back spasms started, at first painlessly then not so painlessly. I also had one trip to the ER for hip tendonitis, after starting a walking class.

Years later I began dancing again and always seemed to have some injury. Sprained ankle, sprained knee, same old sharp shooting pain in my neck or ankle, a torn rotator cuff (no known cause), a bulging disc in my neck, and my personal favorite rib subluxations. (A subluxation is a partial dislocation).

Fast forward to 2016.....

I was having a really rough time, I had a "back strain" that I had been dealing with for a year. I could barely walk due to knee pain and hips that kept going out of place, my ankles had begun to give out on me and hurt daily, my ribs were often out, and I kept spraining my wrist. I was doing one of my usual late night web searches when I happened upon those three words EHLERS-DANLOS SYNDROME. The journey began.

I initially saw a rheumatologist who said that I had Joint Hypermobility Syndrome, usually thought to be a benign condition, and would feel better as I aged. His response to my question about what to do for pain was " I don't prescribe Hydro". My mother told him that I wouldn't take that if he gave it to me. He then said "well take Aleve". When I said that Aleve didn't help he said "well don't take it if it doesn't work".

I was left confused but somewhat optimistic there was an answer. I found a few groups on Facebook and joined. I decided to give it one more chance and I set an appointment with a Geneticist and waited a few months for the appointment. To my great surprise this doctor was different. He not only diagnosed me with Ehlers-Danlos Syndrome Hypermobility Type but also Postural Orthostatic Tachycardia Syndrome or POTS (which explains the fainting and tummy trouble) and indicated Mast Cell may be a possibility. Now I have the alphabet on my medical chart EDS, POTS, MCAS

I am still dealing with the changes that all of this has made in my life. I am currently working my way through the grief of the life I had and the life I wanted to have.  A few years ago I was running 3 miles, doing zumba 2-3 times a week and getting at least 10,000 steps a day. Now I have some days where I have trouble putting on my shoes due to pain. But I still teach dance and try to get steps in. I have been told that running is out ( I have dents in my ankles due to all of the instability caused by the hypermobility) and I have been told I really shouldn't do zumba but with modifications I was told it is okay.

I think the hardest thing about all of this is that though it answers the questions I have had about my body for as long as I can remember, there is no answer as to what to actually do about it. Each person is impacted differently and not all approaches work for everyone. There is no cure for a genetic condition such as this. All I can do is learn about proper ways to do things, strengthen the muscles around my joints to try to reduce pain, listen to my body and prepare for fatigue, and buy as many braces, tools, and pain aids (ice, meds, creams) to have on hand for bad days.

I am a zebra warrior and my biggest advocate in this. I have met an awesome dazzle of fellow zebras and found even more strength than I ever knew I had. I have also found support in close friends as well as friends that I didn't know cared as much as they do.

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