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Sandyis How are you doing?
- Location: Dallas, TX, United States
- Gender: Female
- Birthday:
- Bio: PhD Clin Psych, retired Licensed Psychol, Certif Master Gardener
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HEALTH INTERESTS:
Ehlers-Danlos Syndrome, Post-Polio Syndrome: Chron Severe Pain , Sleep Apnea, Narcolepsy, RLS, DepressionDRUGS I AM TAKING:
Currently taking Oxycontin, Norco, Flexiril, Lyrica, Seroquil, Prozac Weekly (3/week), Trazadone, Provigil, Nexium, Zantac, Pepsid, Ambien CR, Mirapex, Trileptil, Allegra, Singulair, Levothyroxine, and PRN: Ativan, DolobidABOUT ME:
POLIO (Bulbar and Spinal Bulbar forms) at age 4 and now POST-POLIO SYNDROME (PPS). Initially I had a long rehab but with dedicated parents I came out pretty well. I did have on-going neuromuscular pain. I was eventualy diagnosed with PPS with ongoing muscle spasms and chronic pain in my back and legs. I also have Sleep Apnea and require full face mask CPAP. Relationship to earlier polio? EHLERS-DANLOS SYNDROME (EDS): Was diagnosed at about age 25 with rare genetic disorder Ehlers-Danlos Syndrome. EDS basically is a result of a defect in a protein that is found in every cell of the body. Initially was diagnosed with the Classical form. Had the pain but also had deterioration of joints which over time has resulted in 15 surgeries so far- mostly to repair, fuse or replace joints as they deteriorate to the point that pain and disfunction reach the unbearable point. Have so much metal in my body that I cause quite a response going through security at the airport. Also now have too much metal to get MRI's anymore-Picture me sucked to the magnet when they turn the MRI unit on! Because the Collagen is in every cell in my body I have multiple problems. My vision been affected- picture "Triple Vision"!The only way I can describe it! OIther problems related to the EDS. However, it does not affect my ability to think or to feel. The form I had earlier in life did not prevent me from having two very fine children, intelligent and kind-both of them. They are now adults and fine people. This is very important to me because it appears that I am now showing symptons of a different form of EDS that would have made it very difficult for my body to handle any type of pregnancy.The formI am apparently developing now affects the vascular (veins and arteries) system in my body. I have bumps developing now at about 1/4 to 1/2 inch intervals all along the veins in my arms from my hands to my shoulders. These bumps, as I am told) are valves that develop to maintain the circumference of the veins when the EDS strips the lining of these veins. ] I need alot of help in day to day activities so I have a full-time companion and I live in a "Nursing Home". My daughter insists that this is an "Independent Retirtement Community". However, my feeling is that when the average age is 84 (I am 60)and BINGO and Bean Bag Baseball are the big things going, then this is a Nursing Home despite what my daughter wants to believe. But now after 2 years here I find this is a great place with great managemebnt and even better residents. I have a choice, as I see it, I cannot control my disorders or even the Side Effects of the drugs I take for them, but I can contrtol whether I have a smile or a frown when I go out my door. And I can control whether I want to help my neighbors here who may have even more problems than I have or I can constantly focus on my own pain and disabilities. Well, I can tell you, life with a smile and with the intention of helping others is a much easier life to live than is the alternative!PHOTOS:
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Living With It in Chronic Pain
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Sandy answered Can I take a Flu shot and or the Swine Flu shot?
10/12/09
Sandy answered i was droped from pain management ineed a new doctor help
10/12/09
Sandy answered oxycontin vs oxycodone
10/12/09
Sandy answered HELP
10/11/09
Sandy answered What is the difference between M523 and IP204 whit pill?
10/11/09
10/11/09
10/11/09
Sandy answered How do others live with there chronic pain.
07/25/09
Sandy commented on Tired of being judged for taking narcotics
09/21/08
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