Ignorance is bliss....or is it?

The last 7 months have been a bit of a fact finding whirlwind..... an emotional roller coaster that has taken me for a ride. First I felt relief and satisfaction that I had figured out the mystery of my many health issues. After a bit of research I felt overwhelmed and sad by the difficult road ahead. As I visit with doctor after doctor to determine baselines and discuss a game plan for my future care I have slowly found myself accepting that which I cannot change with a new found resolve. I am comforted by the fact that my findings will help my younger relatives live more of their life. Through awareness they will be able to avoid lifestyle factors that could jeopardize their health if they find they have indeed inherited EDS.
Like many others I spent Thanksgiving surrounded by relatives.
My recent diagnosis of EDS made it seem that much more important to load up myself and my newly acquired knowledge and travel the four hours to Oklahoma to see my family. Much to my surprise,my health was not a topic of discussion. Ehlers Danlos Syndrome was to be the 500 pound gorilla in the room that everyone ignored. My niece and nephew, both new parents, hadn't heard of the newly discovered genetic defect growing on our family tree. My beautiful and curious 21 year old cousin asked "Is this something I should be concerned about?" Why hadn't this information been shared with them? Why wouldn't you want to spare others pain by empowering them with information?
Why?
I drove home another four hours pondering this question. No good answer came to me.

It is frustrating to reach deep in your heart, past the sadness, to find the silver lining in a less than ideal situation... only to find that nobody wants to see it.

better living through chemicals...as needed

While listing my medications in preparation for a visit to the eye doctor It hit me just how much a genetic defect in your collagen can benefit your local pharmacy. The prescriptions for pain,inflammation,and sleep medications have quickly filled up my bedside table. They stand alongside my daily ADHD pills and many other non prescription remedies for me to pick and choose from...as needed. Excedrin or Maxalt as needed for migraine. Benadryl, Domeboro powder, Caladryl, or a Medrol dose pack as needed for allergic reactions. Albuteral inhaler or Advair as needed for asthma. Bio freeze, mineral ice, Advil, Mobic,and Darvocet as needed for pain. Tylenol pm or sonata for sleep as needed. Vitamin C is taken daily now for the possible chance that it can strengthen the vascular system. My sensitive skin requires special soap, lotion, and shampoo that is free of dyes, fragrance, masking fragrance, lanolin, parabens, and formaldehyde. Vanicream and Free and Clear products can all be ordered at the pharmacy counter. The staff at my local CVS have learned to recognize me after 11 years and 11 surgeries worth of visits. And I am very comfortable calling my pharmacist at the drop of a hat to make sure I don't mix and match what I shouldn't. He is always happy to help me at any time of the night. I just love 24hour pharmacies!

don't protease me

I stumbled upon a bit of information that is definitely worth sharing. It seems that pineapple can be hazardous to those diagnosed with EDS. More specifically the proteolytic enzyme bromelain that is found in the fruit and in higher concentrate in the stem. At first glance you might think that bromelain is the magic cure for many of the problems associated with EDS. Do a quick web search and you will see a laundry list of ailments it can be taken for and more than one advertisement that promotes the pill form of bromelain as a cure for Ehlers Danlos Syndrome. What they fail to mention is that bromelain is a protease enzyme....a protein digesting enzyme. EDS is a defect of the major structural protein in our bodies known as collagen. Duh! Even the pineapple growers of Hawaii list a warning on their web site against eating pineapple if you have EDS or a number of other ailments. Take note that meat tenderizer is made from bromelain too and similar enzymes can be found in papaya, mango,and kiwi fruit.
You can still eat pineapple if you follow one rule. Only eat it if it has been canned. Seems the heat from the canning process kills the enzyme. Good to know I can still have pineapple upside down cake. A small but tasty victory!

splint personality

I received my first seven silver ring splints.They should help support my finger joints and keep the dislocations and pain to a minimum. They are indeed beautiful and feel nice too but a few of them don't exactly fit and the right thumb splint just can't seem to keep my thumb in place. So.... we'll be tweaking them and hopefully my aching joints will get some relief once I am able to wear them daily. I've been thinking about how to describe the pain in my fingers. The best comparison I can come up with is the same tenderness you might have the day after you jam your finger on a basketball. Each joint in every finger becomes sore and swollen in a similar way when I use them. Ice helps. Ice packs, ice in a cocktail,and I'm sure ice cream would help too!

million dollar baby

My new ankle and wrist braces make me feel like jumping in the ring and going a few rounds....running up steps Rocky style....and dancing in place in a torn sweatshirt.
They are for added support while I do crazy joint stressing stunts such as walking and picking up things. The ankle supports are the same kind that place kickers use. Cool huh? They feel fabulous! The wrist support also has a handy dandy thumb support to keep my thumb from hyper extending which will help reduce pain and the groovy corset style lacing on the sides reminds me of a stage costume that Madonna might have worn on her Vogue tour. I just adore accessories! Speaking of which....my silver ring splints are in the works. Ooh La La.

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.

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.