Tuesday, July 28, 2009

Needy Women

Women have a way of stepping up to the plate with such gentle strength when they are needed. Their nurturing instinct prepared to do service when duty calls. These days the women in my life have rallied around me with their gentle loving spirit and kindness. They seem to know what it is that I need and more importantly what I don't need. I do not need sympathy.I need understanding and respect for what it is I am going through. I do not need doubt and questions.I need friends that care enough to inform themselves about my condition so my illness will not consume our every conversation. I need trust. Although it is not ideal, those closest to me know the relief and sadness that came hand in hand with my diagnosis of EDS and they trust that I have come to this place honestly. It is not my job to convince anyone of my illness. I need someone to listen when I'm frustrated by the absurd and insensitive things people say. I do not need advice. I need a little help around the house. I do not need to give up my life. But most of all...I need to laugh, a cold beer, live music, and a heaping plate of nachos.

Sunday, July 26, 2009

Water Bored

Well, I am about to complete my 6 water therapy sessions. My therapist is showing me what I can and cannot do without damaging my joints because even a water class designed for the elderly would be considered too stressful on my failing joints. Then I will be on my own to continue at the community center pool. The exercises (and I use the term loosely) are a bit silly. Especially with my athletic history of track, soccer, tennis, and bodybuilding. I remember working out so hard that I couldn't walk a straight line to my car... Doing 400 sit ups a day....spending a sweaty hour on the treadmill. Now, here I am holding onto the handicap railing in the pool and walking to the end of the pool and back. Then I get to change it up and do it backwards! Before my 20 minutes are up I have performed several more humiliating exercises such as lifting my foot 45 degrees behind me and lifting my straightened arms from down at my sides to the surface of the water. And work it.... and own it.....one and a two. An elderly man is over a few lanes doing laps. Something is wrong with this picture! Believe it or not,those silly little exercises kick my behind! And it is nice to spend twenty minutes of pain free movement. The water is cool and soothing. And in the water, I hardly notice the extra 30 pounds that came quickly after I had to quit exercising. My second dad Ted taught me a quote that I find myself repeating a lot these days- "Things work out best for people who make the best of the way things work out." Thanks for the positive attitude Dad! It's coming in handy.

Tuesday, July 14, 2009

My people

I have found my people on the facebook Ehlers Danlos group page. Their post
You know you have EDS if...... told me so. For your enjoyment and a little insight into EDS here is a bit of the list.

You know you have EDS if......
The highlight of your day is bedtime.

Even your dish detergent is fragrance free.

Your most prized possessions are your wrist braces.

You can't lose weight because all of your meds say to take with food

You didn't realize that not everyone can put sun tan lotion on their own back.

You leave the caps off of your medications so you won't have to take them off again.

While bending over to tie your shoes you wonder what else you can accomplish while you are down there.

Your favorite game is guess how I got this bruise

You can't remember if the post it note reminding you to take your pills is from today or the one you just wrote for tomorrow.

You head to the bathroom, stub your toe, sit down to check out your injury then start to watch TV and forget to go to the bathroom.

Medical students flock to the examination room to ooh and ahhh at you.

You are on a first name basis with your doctors.

Your calendar has more doctor's appointments than meetings

Every guy you ever dated remembers you soft skin.

You've ever laughed and dislocated something.

Your "to do" list has two things on it and you don't get one done.

Thursday, July 2, 2009

brace yourself

One of the issues associated with Hypermobile Ehlers Danlos Syndrome is joint laxity. When I read that my joints would one day start to dislocate spontaneously I was certain this would be a bit down the road. Surprise!....my left middle finger decided
it would be the "ceremonial first" to introduce me to the joys of dislocation. Not to be upstaged, my right knee joined the festivities soon after. My hand therapist began the splinting process with some plastic make shift finger splints that will help her determine the type of splints I need. The plastic splints will be replaced by groovy silver ones that will make me look like a gypsy. The hand splint (which looks like a Jason mask) is to keep my thumb from hyper extending. I also have a lovely new knee brace. I apologize to whoever is behind me the next time I have to walk through the metal detectors in the airport. It may take me awhile to shed all of the metal gadgets adorning my body. Brace yourself....it's going to be a bumpy ride!