|
In Remembrance
|
|
Join Date: Aug 2006
Posts: 1,002
|
|
|
In Remembrance
Join Date: Aug 2006
Posts: 1,002
|
Oh Tiggers, yes, this entire TOS thing is long, painful, frustrating and the thing that I come back to is that it is so rare, that most if not all docs generally do not understand our symptoms fully. We have such a small choice of docs (compared to other illnesses) from which to choose, and then if one of them doesn't feel like treating TOSers anymore - we seem to burn out our pain mgt. docs - then we're left having to find another doctor, and it does begin to feel like we're so alone.
That's why this site is so very important. We have that handfull of good docs who have dedicated their lives to treating us, whether with surgery or not, and a few PT angels who help us. But for the most part, this is a very lonely journey.
When we've had our TOS meetings in Southern California, when people meet they practically (well they do) have TEARS in their eyes from meeting other REAL people (all women so far in person) who have this injury, illness, syndrome. Even though we have slightly different versions of TOS, it only takes a few minutes to see that we ALL have it, it isn't in our head, and those weird symptoms we have are also felt by others. We also, as a group, are or have been so utterally HARD WORKING, ambitious, creative and generally such great and caring people, that one stops thinking it had anything to do with fault.
Yes, it's so very hard. We don't give up, though. We keep eachother going.
|