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Originally Posted by dessteele
I'm so sorry you're going through this with Blue Cross and this obviously ignorant doctor. It's terrible to be in so much pain and have to be your own advocate. I've not had this experience, and hope that I never do, and even more hope that you'll find the light at the end of the tunnel soon.
I know what you mean about the crying. This disease is so personal, and so totally misunderstood. I know how hard it is to face the ignorance, knowing that the person you're attempting to convince of your reality could never begin to know what you're dealing with. It's so likely that this jerk of a dr could deal with the level of pain you deal with everyday; it's maddening.
I was in a flare up for the last 3 weeks or so (had a nerve block today and am feeling so much better already), and yesterday had an argument with my daughter. Of course, I cried. Emotions run so high when the pain is bad. And of course, her first reaction? "Don't try to make me feel guilty by crying." Made me cry even harder; it just brought home how totally disconnected my family is from this disease and what it does to those of us who have it.
I'm praying for you. I know how hard it is to keep your head up and to keep trying to just live, let alone find a little happiness and comfort. Still, you have to try. Try to center yourself, spend some time with a cup of tea and something, anything, that makes you feel good in your heart and soul.
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Hi dessteele,
I just wanted to tell you how your response and encouragement to hopeful touched my heart. How comforting you were to her. I loved the thoughts you shared with her and in turn encouragaed all who read it.
How long have you had RSD? Flares are tough to deal with that is for sure. Hopefully the nerve block is continueing to help you. I have never had a nerve block. It was 4 years before diagnosis-now full body, internal and 14 years. Now I am aware I got it following benign breast tumor. Swollen arm, withdrawal of green fluid and frozen shoulder. Dr. got rid of me-no antibiocs - sent to Rehab Dr. to oversee physical therapy. It took 100 treatments plus I did massage therapy on my own before the p.t. They wanted to operate and break my shoulder, but I said NO and continued the massage therapy and p.t.
I called Blue Cross and told them I was sent to orthopedic surgeon who wanted to operate and would still need p.t. after surgery. Would they like me to do that or pay for massage therapy????? They came back on the phone and said, yes, they would be HAPPY to pay for massage therapy and continue with physical therapy. Not knowing I had RSD, I'm so glad I didn't have the surgery. I've continued with massage therapy.
When I got RSD, my daughter was 16. Our family were very active, water skiing and snow skiing, traveling, tennis 5-6 days a week. aerobics. I had a couple of remissions, then injured in my hand while water skiing-was misdiagnosed with rheumatoid arthritis. My RA tests were negative, so I went back to Oregon to sports injury group. The hand specialist said RSD within 1 minute. sent to hospital for nuclear med tests that were positive, started physical therapy next day and Doc ordered a tens unit. Came back to Arizona and found neurologist and orthopedic hand Dr. One of the bests things the ortho did was desensitization. My hand is permanently paratially paralyzed, but at least got some use back and can cut my food, etc. moved other other hand, then full body. It was so hard on my daughter, she wanted me back, but not possible.She is 30 now and married to a wonderful person. She finished college two months before the wedding. She is a court reporter and has done RSD deposition. He is a commercial pilot. My husband has come a long way in understanding. I'm so very grateful-have caring friends that come from Oregon every year and new friends here and wonderful friends on this site.
My Dr. just finised a trial study on 200 people, and I'm on a new drug and sleeping 10 hours a night. Because of restorative sleep, I now have cut my pain and anxiety meds in half. I'm starting to be more active, driving again. Hope to travel a little. Feel like getting some of my life back.
Our monthly RSD support group meeting Saturday had a RN nurse speak on superfoods and high antioxidant foods. It was very good. I also attended the yearly RSDSA meeting here in Scottsdale.
For me, music, meditation, prayer, scented candles, reading, journaling, stretching are all helpful distraction. I also love to read. Epsom salt bathes, essential oils are all calming. massage therapy. swimming has kept me mobile.
There is a website rsdrx.com from Dr. Hooshmand who is now retired, but still has the website up. Under puzzles List, he has 146 questions from patients and his answers. Very good.
Please let me know how you are doing. I find this forum full of loving, kind, compassionate friends. Plus, we need each other. How old is your daughter. My daughter is grieving too. They moved in with us a few months ago and it's been wonderful. They sold there home, to put Lucas thru flight school and then he became a flight instructor then hired by the airlines and moved to Chicago for a year. They moved back and he commutes to Chicago. and our daughter still works for the same court reporting firm. They have a miniature min pin and we have a cat. The cat doesn't like the dog, and the dog wants to play with the cat. We have two floors, so they each get a floor. My cat sleeps with me, and I find so much comfort from both pets.
I like your phrases of this disease being so personal, and trying to center ourselves. Thank you for your insight.
Take care, and hope you are doing better. Your friend, loretta soft hugs
