Jenna, you sound like a private person and there isn't anything wrong with that. Perhaps you would be more comfortable doing private messages. To do private message-look to upper right hand corner with your name and your notifications-push that and it will bring up a page. on the left you'll see private messages-push that and write the name like loretta, then subject
sharing thoughts. It will get you used to communicating with ones you feel comfortable with. Sharing thoughts that you feel safe-is a way to feel relief, feel understood, and emotionally feel understood. It is healing.
As you meet ones, you'll learn practical methods of relaxing, helping others feel better, and therefore feeling better yourself.
Jenna, you could tell about yourself-areas you feel comfortable with.
I am 62, married 42 years, one daughter 31. Live in Arizona and got RSD 15 years ago following surgery. Wasn't diagnosed for 4 years, but immediately did get pt because of frozen left shoulder. I had like 100 treatments along with massage therapy and got nearly full range of motion back. The therapist told me it might go to other shoulder. Had at least year remission, then went to other side. More pt. and another remission.
While water skiing, got RSD in left hand. Was misdiagnosed, then correctly diagnosed after flying from Arizona to Oregon. As I learned about it-it was devasting. No more tennis with my daughter, water skiing, snow skiing, later when I went full body, my neuro suggested seeing a psychiatrist. For me, that was a life saver. I was crying so much and devasted. When my neuro said I was full body or generalized, he suggested seeing a psychiatrist. When my parents died 10 years prior, I did have 2 years of grief therapy.Losing your health is like grief therapy. actually same stages. We have so many losses. When we deal with the changes and losses in our life and look to what we do have, we gradually take baby steps in living life.
I do miss many things, but just bought a camera to start a new hobby of photography. We used to travel a lot and I hope next year to do a little traveling. I have found journaling to be therapuetic. It took several Drs. to get the right one. We have to be our own advocate. I have a wonderful Dr.-I didn't like the two psych. docs my nuero suggested. But I found my own- out of the yellow pages LOL 6 years now, and I'm on the right meds and better than I've felt for a long time. Actually the last two days have been hell-it's been raining and high high pain. I see my Dr. Monday and am checking into a compounding med for skin and pain issues. I have internal RSD and parts of my body feel HOT like 105 degree hot pain. It's pretty tough. So hopt the compounding pharmacist can do something. It is tough. I have some goals to make my life productive again. Just a little goal or project brings accomplishment to our life. I know I always feel better getting out of house and doing an errand. I can drive after waiting 4 hours from taking pain meds.
Sometimes I have to wait 2 4 hr periods.
I don't have insurance anymore, so am trying to get SSDI. I loved what i used to do. Have a coffee business-delivery products and equipment to various businesses, and bottled water with refrigerated equipment. I really miss getting out and meeting new business, but pain limits me.
Tell me about yourself and how you got RSD and how long did it take to get diagnosed. I've written Dr. Oz. and asked for RSD to be highlighted on the show. Our neighbor is a Dr. that teaches at a University for Drs. and he asked me if I would speak about RSD to student Drs. I'm hoping to do that this winter. RSD just needs more exposure to medical students and schools.
I especially hurt for children that get RSD. I'm grateful I got to have a child, work and travel. My daughter was 15 when I got RSD. We played tennis 5-6 days a week, taking lesson, attended tennis tournaments-went to US OPEN 12 days-so much fun. I can't imagine a mother with a child with RSD-just breaks my heart.
I would love to hear from you. I'm going to do some research tonight. If I find something out, I'll write and share with you. One of your new friends, loretta with soft hugs