where to begin, when the begining just began

Starting a new way of living and thinking after 34 years was one of the hardest things that I have yet to accomplish. Let me back up...

I was born thru a normal delivery [my mom may argue with that statement :) ] never the less I was born March 13, 1977 at 9 lbs. 5 oz. I grew up with parents that separated and divorced around the time I was 1. Both remarried and both got divorced again. Both parents are remarried and both are active in my life.

Early on I knew I was different from my double jointedness to my strangely bony toes and high arched feet. I grew up with hyper extending limbs a lot, sublaxing and twisting of ankles frequently with no knowledge that all of this could and would eventually rotate back to a disease I knew nothing about. After graduating from high school I had more and more problems with hips 'dislocating' and unexplainable pain in other areas. I saw multiple chiropractors and even a orthopedic surgeon about why I was having on going hip problems at an early age. Inconclusive as always.

After the birth of my son when I was 21 I had a prolapse uterus which is basically my uterus decided it didn't want to stay and tried to break free when I delivered my son. :) Weird yes, reasoning from doctor no.
Moving on, more hip pain and knee pain as my son got older I began working out which seemed to alleviate the pain for a short time. However, again the pain always returned with no explanation. The pregnancy of my daughter did bring some worries however I delivered her free and clear of any issues. I began working out again and this time more intensely.

[moving forward quickly to avoid pain and bored ism on your part]
The change of workout plans this year brought quick change in my body along with a lot of discomfort that finally led me to get a second set of x-rays on my hips and a ANA blood test. Of course all of these tests came back as 'fine and normal'. I was told to take Tylenol...*sigh*

Advancements in technology has really made it easier for people to find reasoning to what could be causing issues within the body. Technology is also amazing enough that people out there experiences the same 'symptoms' that can relate to what you may be going thru!

So I went home, googled my symptoms [this did take a while and a little tweaking] to finally find potentially what was wrong with me!

Ehlers - Danlos Syndrome or EDS. Something I have never heard of and honestly didn't figure I had. But I made an appointment with a geneticist and a month and a half later received the official diagnosis. WOW. That is all I could say. The geneticist was also concerned about my bony toes, high arched feet and family history of muscular dystrophy type Charcot Marie Tooth disease. So I made a neurology appointment for a month after that. And I left with a diagnosis of CMT [Charcot Marie Tooth]. After leaving the geneticist office I read everything I could on EDS and so many things began falling into place! After leaving the neurologist I was confused and felt things had just gotten extremely complicated.

This is all a shortened version of my life to this point. I know things could be 100 times worse, however this is my reality. I have grieved, been angry, felt sorry for myself and now have finally reached the 'okay' point. Day to day, hour to hour and even minute to minute.

I still work out almost daily, however it is all tweaked to fit my body. I worked out today and feeling like my feet weighed a ton and I could barely move them thanks to CMT I felt alone and boxed in. I felt like nobody in this world understands what I am going thru.

I find people who have EDS but not Muscular dystrophy or people with Muscular dystrophy but not EDS.
I go numb in my feet and achy in my finger joints. My stomach has two hernias from surgery last year that need repaired. My daily pain changes daily. My ligaments grind when I workout. My attitude changes in the blink of a second. My mind wonders if I would be better off without knowing. My limbs are weak. My neck hurts some days so bad it hurts to smile. My balance is worse than a 80 year old. I hate complaining and know that although family has good intentions and want to support me....I know they don't understand and I am OK with that. I love them all.

Well off to a finally kid football game...