Sunday, November 15, 2009

November - The month of EDS

November 3,2003 was a day that changed my life forever. That was the day we were told that i had Ehlers Danlos Syndrome. In some ways it was a shock to us and in other way's it was not many years had gone by and mom always knew something was different about me and she knew something was not right because i was getting hurt all the time and no one was able to tell us why but now we knew why we knew i had EDS but little did i know how it would change my life.

7 years have pasted and it has been a living hell for us all. Me haven to be in and out of the hospital for surgery's for problems from the EDS, Haven doctor's tell me that it's all in my head , friend's beening lost because of my illness and friend's dieing from it , and now haven a friend who is very sick because of eds.

But the thing that make's the hole thing so hard is that i went to USF on friday because my heart doctor was worried about EDS and heart problems . So i had this set up for a year so i go and the stupid doctor tells me that i don't have eds . I just sat there and cried for years i am told one thing and this person tell's me this without doing the test that my doctor asked to be done to check me for different types of eds.

I was alone mom could not come with me because she is not well so i went to the appt by myself and i am told that i am crazy!! that the pain i am haven is because of my depression and that i have no eds trates!!! My life is turned upside down i don't know what or who to beleave anymore.

So this is a life of hell...