Wednesday, June 24, 2009

Bull in a china closet

All my life I have been considered clumsy, klutzy, accident prone.... a "bull in a china closet" my mom always said. If there was an uneven surface or a pebble in my path I would trip, fall, and sprain my ankle. If I came into contact with anything remotely sharp my skin would tear. "You could cut yourself on a rubber ball" my best friend would tease. And the bruises! I can't remember the last time I didn't have at least a few bruises on my body.On occasion enough that it made my male friends afraid to be seen with me for fear people would deem them an abuser. An active life full of sports, a "can do" attitude, and a labor intensive career path made my many scrapes and injuries seem justified. But now, at 41, I can laugh in the face of such ridicule. I am not an unaware klutz. I was watching where I was going. I will no longer be labeled a bull in a china closet! But come to think of it......right now, I'd love it if I were indeed just clumsy. It's kind of a cute word.

Friday, June 19, 2009

but you don't look sick

I have had a handicap placard for some time now due to my many knee surgeries. But I allowed an incident several years ago to rob me of what I now know would have been
a great benefit to my long term health. Not long after a knee scope a woman followed me into a Target store from my handicap spot and proceeded to verbally assault me. "You don't look handicapped!" she yelled in an attempt to shame and embarrass me. I'm certain what she considered a suitable punishment for my wrong doing and a noble act on her part. Those who know me, know that I am both non confrontational and an extreme introvert. So, needless to say I was both hurt and humiliated. Somehow I mustered up the courage to walk up to her. With tears in my eyes I informed her that I had just had knee surgery and that she shouldn't speak when she has no idea what she is talking about. I knew my words were wasted as she nodded in disbelief and judgement. And she continued to spew ignorance as her husband pulled at her arm and mouthed a silent apology to me. When I told my Doctor of the incident he shared with me a thought that has served me well in many circumstances "How dare she pretend to know your truth."Doesn't that just say it all? How many times do we make judgments about people when we don't know the whole story.....know their truth. That little statement has led me to live my life with a bit more understanding. It has led me to assume in the direction of understanding. And it makes for a pretty good retort "You don't know my truth!" Very dramatic. Now that I will be using my handicap spot more often I will be dusting off that phrase as well as a few others such as..."Ehlers Danlos look it up jerk!" or "You can't see pain!" and just for fun "guess which leg is fake!" In a continued effort to look at the bright side of Ehlers Danlos Syndrome I have to admit that I do love my rock star parking.

Thursday, June 18, 2009

Physical Therapy

I met with a very kind Physical therapist yesterday to discuss deep water therapy.
It seems to be the preferred method of cardio for EDS patients. She impressed me immediately with the fact that she had researched EDS and knew that I was going to have to be my own advocate. She was gentle with me...she noticed how I held my pen and could see the discomfort in my hands, she noticed the changes in my skin coloring when I over heated while walking past the hot tub. She noticed tears in my eyes when we discussed keeping me out of a wheelchair for as long as possible and then I noticed her sympathetic tears. She was soft spoken and completely present.Offered me tips on saving my joints and let me know that every little thing I don't do now will keep me out of a wheelchair that much longer. Things like mowing the lawn, pruning trees, fixing things around the house, walking up the stairs,lifting heavy items, washing my car. She also gave me a great piece of advice. "do the things your heart truly wants to
do and forget the rest" The EDS patient can go to a concert or Worlds of fun but the
handicap "hangover" may require two days of bed rest to recover. I appreciated her gentle candor. The last thing I need is someone telling me "everything will be okay"
when, to loosely quote my magic 8 ball -all sources say otherwise.

Wednesday, June 17, 2009

Chronic Pain

It's hard to explain chronic pain. We've all been sore after a hard work out, sprained an ankle,or stubbed a toe. It hurts a while then gets better and the memory of the pain disappears soon after the bruises fade. What if that sprained ankle didn't stop throbbing? What if your ankles, knees, wrists, shoulders, and elbows all felt as if you had hurt them yesterday? It's hard to imagine and even harder to live with. Unfortunately, chronic pain is a very real part of living with Ehlers Danlos Syndrome.The pain is there when you go to sleep and there when you wake up. Pain can rob you of hours and hours of much needed sleep. Like a slow and steady flashing light
attached to a sawhorse in a construction zone the pain pulses. Wrist...knuckle...elbow...ankle...knee...shoulder...thumb...jaw...over and over in random order my body tells me how it feels. Relief comes in various forms. Pain killers, biofreeze, ice, and a few too many beers all help to give me a little comfort.
A sense of humor helps too. It's hard to cry when you are laughing right? At the end of the day I'm happy to have made it through... ever mindful of those who are feeling worse and grateful for the little things that bring me joy everyday.

Symptoms of Ehlers Danlos

After meeting with the genetic counselors I have a diagnosis of Hypermobility type EDS
with enough Vascular type factors to be considered highly probable Vascular type EDS

My symptoms include
Fragile and soft skin that tears and bruises easily
Hypermobility of joints/loose unstable ankles
Feet Pronate
tendinitis in wrists, elbows, and shoulders
early onset varicose veins
veins visible through skin
fragile veins (phlebitis)
dilated aorta
fibrous growths on shins
piezongenic papules
family history of brain aneurysm/heart conditions
Family members with hypermobile joints and mitral valve prolapse
Near sighted
Thin hair
Joint problems-nine knee surgeries for cartilage tears-meniscus transplant in right knee-two shoulder surgeries for bone spurs

My story

After nine knee surgeries, two shoulder surgeries, and one hernia surgery I finally know what is really wrong with me. While watching an episode of Mystery Diagnosis I began to recognize myself in the many symptoms of a rare genetic disorder called Ehlers Danlos Syndrome. Multiple joint surgeries, hernia, family history of brain aneurysm, joint hypermobility (knees bend backward, thumb can bend back and touch arm),fragile skin that tears and bruises easily, veins easily visible through skin...and that was just a few of the many symptoms I had in common with the patient on the show. When I approached one of my doctors with the idea that I might have EDS
he couldn't believe that no one had ever suspected EDS before. With his encouragement I went to see a cardiologist at KU Med. After a thorough exam I was indeed diagnosed with EDS. And so my journey begins.