Dear Swatgen27, YES, you can pick yourself up, just know it takes time. You are dealing with not just a painful disorder, but a huge LOSS. Loss of our health, loss of your job, loss of your dreams, your financial stability, all these things are huge. It's grief we feel-we go thru the stages of grief. The support and compassion here on neurotalk is something, if you continue to reach out to us, we would cherish the opportunity to be 'here' for you. The emotional pain is something I believe we can't do by ourself.
When I was diagnosed with 'full body' or generalized RSD 6 years ago, my neuro suggested I see a psychiatrist to help me thru it. He gave me two names. I didn't like them, so found one myself. He not only is a psychiatrist, but a neurologist, pharmacologist, internist, board certified is all areas, but just opened a clinic with HBOT. Went to Cornell, NYC, Mt Sinai, 25 years of practice in NY, Talk Radio too, and served in Viet Nam as head of severe burn patients. He lost his wife to cancer and daugter-age 23 to carbon monoxide poisoning while visiting an aunt in Florida, who had just moved into her new home and turned the heat on for the first time. No one woke up. He has seen pain, and felt pain, and has helped save my life in an emotional sense and I found him in the yellow pages. I don't think that was an accident.
I also spent 2 1/2 years of counseling when my parents died when I was 25-cancer and heart. I cared for both. The grief counseling prepared me for my RSD following surgery 15 years ago when I was 47. Our daughter was 15-we played tennis every day, water skied, snow skied. Our family of 3 traveled
to many countries in Europe, Mexico, Hawaii every year, I loved loved our family business of building residential and commercial developments. Then we moved to Arizona for our daughter to finish college-court reporter-. We bought a coffee business and I loved it too, tripled the business-but now haven't been able to work the business for years. When the economy tanked so did much of our business. I want so bad to get out there and get new accounts, and am going to try this winter. Summer of 110 degrees doesn't like RSD. It's been 107 up until this week!!!
Maybe not now, but can you see yourself possibly having your own business out of your home. You have such a wonderful education, and if you had leaway of your own hours, could that be possible? I can't drive for 4 hours after taking meds, so I have a window of time in the afternoon I can go out to solicit new accounts. We have run our own business for over 40 years. Love the freedom it offers, and now it is only possible to work a limited time, and can work around flares etc.
I attribute my present mobility to physical therapy, massage therapy, and swimming. Water needs to be 86 degrees according to RSDSA. My toes were curling up and my Dr. said to get in the pool everyday and squeeze them while swimming. After 4 months, they were touching the ground again.
I have one hand that is like a claw, frozen partially. I didn't get diagnosed for 4 years and had delay in therapy for the hand. The therapy is torture, but am so glad I went thru it. Also desensitization is so important-I don't have any sensitivity to clothing, sheets etc. I did the desensitization in therapy and also at home dailey. If you have this issue, I'll share what helped me.
Today, my new digital camera just arrived. I'm going to take a class on how to work it and make photography my new hobby. (I'd rather play tennis)
but it's plan 'B' !
Please know we care, I cried when I read your letter and Kathy's response.
RSDSA is a national organization. If you put in your zip code, it will give you the nearest support group.
Even though I have full body and internal RSD, being on the right meds has put me in a better place. My Dr. is conservative, and has used a combination of meds to deal with neuro pain. I'm on Vicodin-4 a day. used to be 6 a day. 4 lorazepam-used to be on 8. This anti-anxiety med has helped me use less vicodin. 2 blood pressure meds, sleep med is seroquel xr 150 mg. sleep 10 hrs. straight. Ambien cr quit working. He was doing a 200 person trial study of seroquel and put me in the trial-they found some people it worked well for sleeping. Cymbalta 120 mg for anti-depressant, which works on nerve pain as well. Everyone is different when it comes to meds. I used to have electric jerks, shocks, full body, lift my head right off the pillow from a sound sleep. The seizure were terrible 24/7. I was on 3200 mg of neurotin, but didn't have any symptoms of the shocks. Eventually, went off slowly and rarely have any symptoms. I'm now working on taking the weight off that neurotin and lack of exercise put on. I'm working with 1 lb. weights and doing upper and lower body exercise. This winter going to start walking dailey.
Like Kathy said, we have all been in that 'dark' place of facing this disorder, and miss our former lives. Like Kathy, I will give you my phone number if at anytime you would like to talk. Also, if you look at the upper right hand corner where your name is, you may receive Private Message. To send private message, you push on upper right corner and then look at left hand side to where it says send private message.
Please know we care and understand. One of your new friends, loretta with big warm hugs
