As long as I can remember, I have been "fragile".
I bruise easily. If I bump into something - the corner of a desk, a chair, a couch; it's going to leave it's mark.
I cut even easier. What scratches a "normal" individual, would typically send me to the emergency room for stitches... this is NOT an exaggeration. Quite the opposite - total buzz kill! A kid trips on the side walk and gets a scratch - I trip and go to the emergency room.
I was probably 9 years old when I was diagnosed with Ehlers-Danlos Syndrome. I'm not sure what prompted my mom to take me, but I think it was after someone called child services from how often I was in the ER - I was active and clumsy and there often. I didn't want to intentionally have a scar inflicted in order to diagnose the exact type of EDS, so my mom didn't force me... At my original diagnosis they gave us the worst case scenario - they told us I wouldn't live to be 30, wouldn't have children, would possibly have internal eruption of organs (possibly spontaneously). Needless to say, my mom protected me the best she could, and I fought that protection the best I could.
I was married by 21, and by 24 was pregnant. I had a beautiful baby and with little complications - I had to be induced due to increasing blood pressure towards the end of my pregnancy. I now know that the pregnancy had a severely negative effect on my hips - I have to exercise daily to keep the pain in check, and even then it doesn't always help. I knew that I could be passing EDS on to my daughter, but I wasn't sure that I had inherited mine or that it was from a mutation - I'm still not sure, and that's partially why I'm going back for more testing in September.
After my daughter was born until a few years ago, I lived a relatively healthy and uneventful life. I had a little bit of arthritis pain here and there, a few spots of bursitis, but nothing that I would connect until now.
Last July I got on a health kick, but crazily decided to do a high impact aerobics video - yup ShawnT - not my brightest idea... anyways, I ended up hurting my back, which led to a discovery of my severe osteoarthritis and degenerative disc disease in my spine. I essentially have the spine of an 80 year old woman, and I'm only 37.
So, I was seeing a chiropractor for several months, feeling some relief, but not a lot - and I began to experience this horrible exhaustion. I'm often dramatic and animated - do not get me wrong - this is not a dramatized situation - horrible exhaustion meant getting up for work sometime between 5:15 and 5:45 am, going to work around 6:40, working until 2:30, leaving picking up my daughter at 3:00, coming home and sleeping until dinner time - so, say 5:30 or 6:00 pm, and then being back in bed and asleep by 8 or 8:30.
After doing this for the month of September and gaining weight - probably 10 lbs, I decided that something was really wrong - or at least something couldn't be right. So, I scheduled a physical with my primary care Dr. during my fall break... I could not have been prepared for what was to come. The chest x-ray showed something, so they sent me to get a CT scan and another test. I only had to have the CT done because the technician knew exactly what it was.
My primary care doctor called me the next day - he sent me immediately to a cardiothoracic surgeon. The job title alone is scary. I had a diaphragmatic hernia. It was the size of a small nerf football - 4-5" across and 2.5-3" wide or around... it was actually shaped like a little football... we had no idea how long the hernia had been growing in my chest cavity, just that it had gotten so bad that it was depleting my oxygen, thus the lack of energy and constant exhaustion.
I had surgery. I was in the hospital for almost a week. I was off work for almost an entire month - pretty tough for a teacher in the middle of the school year.
I spent the rest of the school year battling my health. I tried to regain my energy. I tried to regain my strength. I tried to regain my muscle and core strength... heck, I'm still trying with most of that. What I've actually discovered is that I've entered the EDS cycle - some good, some bad, a never ending ebb and flow. I just get to roll with the punches and go with it.
On top of all of this loveliness, over the past several years I was experiencing some ENT issues - sinuses and allergies - multiple recurring sinus infections led to allergy testing. One of the side effects of sinus infections and allergies is dizziness, so that is what I've always attributed my dizziness to... until now... now I've got a different dizziness. It occurs when I stand up or get up from laying down... or if I stand and get in a good stretch - you know how most normal people do first thing in the morning or after a lengthy period of time seated. It's pretty unsettling, but apparently also due to the EDS.
Fortunately, I have a great partner in my primary care doc and a wonderful physical therapist. I also have a great allergist and a wonderful ObGyn. I am going for retesting in September with the Geneticist here in Memphis at LeBonheur. I hope to continue tracking the ups and downs of this genetic disorder.
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