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Old 01-16-2010, 09:12 AM
keep smilin keep smilin is offline
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Join Date: Aug 2009
Posts: 851
15 yr Member
keep smilin keep smilin is offline
Member
 
Join Date: Aug 2009
Posts: 851
15 yr Member
Red face

Quote:
Originally Posted by loretta View Post
Hi Momzpeachy, My heart goes out to you. I know how it feels to be full body or generalized. I hate the sweating entire body-the redness, and skin blemishes or break outs. I have a room in our house, where I hide out, and pretty much like to be alone. I've had RSD 15 years ago-diagnosed 11 years ago. My husband is very supportive, although not at the beginning when none of us knew what was going on. It was 4 years before a diagnosis. Our daughter is 30-married 9 years. They moved to Chicago from Arizona 2 years ago and have been back for a year. They are staying with us for a few more months. He flys for one of the airlines and our daughter has worked for the same court reporting firm for 10 years. I'm grateful for everyones support, now that we all know what is going on.
Have you checked out HBOT? I'm going to try it, as soon as I save the $$.
I had very good success with physical therapy and massage therapy. Got full range of both shoulders back. It was very painful, but I'm so glad I stayed with it. Also, one of the biggest helps for me was swimming, and water exercises in the pool-86 degrees. It was kept my toes from curling up. There are gym clubs and Y that have pools for very little $$.
I hate the weight gain too. I had always been thin and very athletic. My daughter and I played tennis-5 days a week, water skiied, snow skiied, horse back riding. aerobics, dance classes. 10 K runs. I had a wonderful psychiatrist that helped me thru the losses.Also miss traveling a lot. But, I think it's like the earthquake, some lose their legs, but are happy to be alive and find other things to be grateful for. That helps in healing. I have several 'tools' that help during 'low' times. I Cry, too, but some of my tools are
music, scented candles, meditation, visualization, journaling,j comedy, sports games, sending cards to friends, keeping in touch with you dear friends, reading, e-mailing, stetching, massage, light exercising, do my nails, I'm on a high antioxidant diet, healthy chocolate. The cocoa bean is the #1 highest antioxidant in the world-the one I eat has a patented cold pressed method formula, thus not loosing nutritional value thru the cooking process like other chocolates. It also has the #2 highest antioxidant Acai Berry from the Amazon Forest. I know I won't be at peace with myself, till I loose that weight I gained from Neurotin and Lyrica. I really feel, I'll be able to cut down at least one of my high blood pressure meds, with weight loss.
So I'm working on healthy eating, exercise, and running a small business from my bed, healthy chocolate.
I wrote you last week by private message. I gave you a website with a lot of good information. Please don't loose hope, I know it's awful to deal with, but we aren't alone.
Last week, when I saw my RSD Dr., he told me about a RSD patient. There was a car accident here in Phoenix. Two cars collided on the freeway and hit a metal fence. One of the poles became a air missle and went thru the windshield of this ladies car. It took off her little finger and part of her arm and impaled her shoulder to the back of the seat. She had 18 surgeries. Her neurologist asked my neurologist if he would take her has his patient and do the HBOT series on her. She had frozen shoulder and couldn't raise her shoulder. After 9 treatments she was waiving to the TV crew. The tv crew came out and interviewed her and my Dr. I went thru 100 pt treatments to be able to get full use of my shoulder when it became frozen after breast surgery. plus 100 massagae therapy treatments.
The VA Hospital in Florida just put in 16 brand new HBOT for treatment of the wounded etc.
Take care of yourself, loretta with soft hugs

So nice to hear from you all!!!!

Momzpeachy... I worry about you and that you are so sad..as we can all relate and we sink to the bottom at times... Thats when all of our friends here jump on and pull you back to the top..cuz you need support and you need us..we are here fro you and know that we share you desperate sad feelings.....

I see myself in the future going thru the same reaction with the Ketamine as yourself...possibly, as I can not take anything due allergic/ bad tummy reactions..to everything... I mean everything..I am cold turkey RSD.. no drugs for help for my pain.. not even a patch as I can tak it off my skin due to the sensitivity of my skin....so I will take heed when my time comes..I am due to go to Dr. S in March...see we learn a bunch from each other here...

I agree about the relaxation techniques as I 've tryed it all..even acupuncture.. no luck there either but I do like my music and quiet..oh sure i have days I would like to cry.. (get this) I am not a cryer...I think I have only cryed, really cryed once since diagnosised 2+ yrs. ago... just can't do it! I am newly out of work (1+ months) due to my inability to physically do it anymore... I fought a galant fight to stay I will tell you....25 yrs. there but now .... my days are quiet... I slowly monuver thru my days here at home now..having my music in the background, light chores and talk with my friends here...still adjusting to my new routine...

Loretta, I am excited to see what your outcome from the HBOT treatment will be... My Dr. had encouraged me to do it also..but that very day at my apt. she placed a call to the hosp. where it is performed, she was told I am not a candidate due to the stage of my illness..too advanced.. so we have not explored that thought since..

To everyone here...we all need lifts and encouragement and advice from day to day..I know you have all made me feel better and educated and encouraged me...Time to lift momzpeachy and Kate up and many others as we can not let our RSD get the best of us..it would be easy to let it control us...but we are in control and it needs to stay that way...

Much love to all...

KS
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"Thanks for this!" says:
loretta (01-17-2010), SandyS (01-17-2010)