Ive never been in a group before so forgive me if i dont know what
im doing. I've been tested and treated for 12 years now and finally
found out i had EDS this last august. My doctor suggested this site
for support and hopefully getting answers. from what ive seen with
recent posts i suppose i should start by saying what type i have,
well they are pretty sure its type 3 but this summer they will be
testing for vascular type because they believe i may actually have
that or another disease that is combining with my eds and making me
really sick. I guess it is scary for alot of people, but for me i am
mainly angry because of how many years i went through different
doctors and pills and tests and all the doubt from everyone
including my own family that i may be making it up but now that my
new doctor physically showed my family i was sick now im being
treated but that hasnt helped me in losing five jobs in two years or
the strian on life itself, i would be so much more comfortable if i
knew someone else knew exactly what all of that is like im tired of
being alone in this, they are now talking about fusing my back and
before they knew it was eds they cut me open on both knees and one
wrist and apparently the way they did those surgeries were wrong and
are contributing alot more pain. the happy news is that i just got
engaged, but i cant find a good book that my fiancee can read that
will explain what i go through and how he can live with me does
anyone have any ideas? or has anyone had the same troubles or am i
blabbing too much?