PURPLEQUEST

My close relative was a nurse and was indiagnosed her whole life. She could barely walk. I have the same condition, as does most women in my family. We also have hypermobility. I have been weaker and slower than the other kids my whole life. The only job that I have been able to do is a programmer or business analyst.. I have been most successful working from home. But it is still very difficult to find employers who will allow employees to do this. I have just lost 2 jobs in 6 months because I am in too much pain to concentrate on anything after trying to drag myself into work and try to work 40 hrs a week. Most successful in the 32 to 36 hrs per week range. I have been on the GUAI for 4 years, most successful.I am still in constant pain, but more energy. And the Lyrica I have just started in last 6 months. It is helping too. Celebrex is also helping for general pain management. I am about to start the paperwork for the social security disability at 46. Myyounger sister has just been thru this over 2 year battle, and she has only just started "temp" benefits that she will probably have to battle about for the rest of her life. I will have to live with my mother & sister while trying to survive with minimal income. I do not know how well that will go... But at least now I am healthy enough to work on paperwork and doctor's visits part time. Before I could not get out of bed. I have tried everything. I am on 6 things at night to help with sleeping. I have always had to be very proactive about researching my conditions and treatments myself... and just finding a good dr who was open to new options. And finding a good local support group also helped. But I have moved twice for new jobs & not been able to find another club yet. So keeping in touch with the old ones. The secret seems to be not driving off a cliff every day. Maybe I am still here so I can help others in some way. That is why I try to work on healthcare types of applications. Try to find something that helps you relax - DVD audio books of Harry Potter helped me - not sure why.. friends in a box perhaps. And EBAY bargain hunting - they deliver everything...good for folks who can't walk in a store - or even open the door... And wearing hats & sunglasses everywhere - very sensitive to light - caused bad headaches. And trying to find people to help with cleaning - maids are great - and grocery shopping - there are a few places that deliver these as well. Also the handicapped parking sticker. That way when you ask them to help you carry groceries to your car - they get a clue that the disabled are not all 100 years old - or in a wheel chair. Good luck with your battles. And keep up the fight.