27 January 2010

Feels Like a Human Freak Show

  I just got home from the physical therapist.  It is really crazy to go somewhere for help for EDS and have people look at you like a FREAK.  The first therapist kept purposely hyper flexing all my joints because he had never seen it before.  Then they paraded each of the other therapist in and kept bending and twisting so everyone could see it.  OUCH.  Guess they know nothing about EDS.  First rule, hyper flex joints as little as possible because it makes pain worse and stretches ligaments even further.
  So, after being the dog and pony show for the afternoon, I was told they basically don't know how to treat me. So, I had to suggest pool therapy to build muscle around joints, but not put the pressure on joints. They did mention bracing joints....did tell me that the knee brace the VA PT gave me was totally wrong and was doing more damage than good.  The PT will call the Dr from the VA this week and get back to me next about a plan of action.   DAMN.  I am sorry, but that is a nice word for me right now.  I want to use every word in the book right now.
  How can there be a syndrome and no one know how to treat it?  I can understand that there is no cure, but at least some sort of treatment would be nice.  I am 34 yrs old and I am not going to be in a wheel chair in 15 years when my youngest graduates from high school.  If you know of any way to prevent further degradation of the ligaments, I would really appreciate it.  I am going to deal with this and try to bring it to the attention of others, this is probably under diagnosed.   How do I get the word out?  The EDNF.org sucks.  They do not give enough information.

PISSED OFF today, but hopefully tomorrow will be better.... I have the musculoskeletal  doctor.  Maybe that person will know more about EDS.  Doubtful, it is the VA after all.  But, if I keep telling the Dr what they need to know, I might just get something done.

Pain Level:  5-6 All over, thanks to the physical therapist.

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