Quote:
Originally Posted by jenno
Hi Ali,
I agree with you that it is very sad that Roz feels that she needs to leave the forum. I believe that there is so much we can learn from her experience and that Roz's passion in reality reflects her concern for all who are suffering from this terrible illness.
If you reread past posts, you will see that Roz too had an injury that resulted in the RSD diagnosis; but what I think she is trying to point out is that a prior infection (Lyme in her case) predisposed her to developing RSD ... and if that illness is lingering in one's system, how can they ever get better.
There is an RSD doctor who would agree with her ... in that he believes that there is in fact often a chronic, sometimes hidden infection that causes and then perpetuates RSD. If you go to www.robertgschwartz.com and click on the RSD link, you will find lots of food for thought.
Ali, we can never accept that the status quo thinking about RSD is acceptable. We all must be open to thinking outside the box. I am part of this site on behalf of my 17-year-old daughter, who like you was diagnosed with RSD when she was 13. She has benefited immensely from hyperbarics ... but this infection connection, as well as other possibilities, needs to be investigated. I for one cannot accept that this a life sentence. One thing that sends up a red flag for me is how many of you young suffers developed RSD at the age of 13, as was the case with Andrea. How much research has been done into the hormone connection? Ali, please never stop asking WHY?
Best wishes, sweetheart!!
Jeanne |
Dear all,
Thank you Jeanne for this very kind thoughtful post here. I agree with you totally about that we need to keep asking WHY? I too think that there could be a hormone connection to this. In addition to young people being diagnosed with this during puberty, the median age of the majority of those (mainly women) diagnosed is 42 another time when hormones are changing. I sure wish I had a Dr. Robert Schwartz here. I will always ASK WHY and will never accept being disabled is my fate. Each morning I wake and do daily affirmations that support the belief that I am a healthy whole person and that each day I am getting better. I am so sorry that your young daughter has to go through this and I truly hope she is able to find the right answers and relief.
Ali, I am always very touched by each supportive caring posting of yours that I read. I wish you did not have to go through this at all. You are such wonderful person and we can all learn more about compassion from you as we travel this journey together.
Roz you have been such a terrific inspiration to me and I am very very sad to see you go.
I hope this gives opportunity to better understand the need for us to be supportive and encouraging to each other.
We all have different experiences, differences of opinion and it is my hope that we can share those in a respectful way and continue to lift each other up.
Much love and peace to all.
MsL