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Advocacy Project 2001: Changing Scenes
New York
NYSN's homepage
May 12th Advocacy Email Campaign:
The email we'd like you to forward May 12th Letter Writing Campaign:
Introduction Page
Sample Letter
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Amy D.: I was diagnosed with Fibromyalgia at the age of 25, I was a month away from getting married. I was having trouble walking without limping because of chronic pain in my legs. The diagnosis was welcomed by me, for finally I had an explanation for my unusual bouts of terrible pain and fatigue. My life all of a sudden made sense. It took the rheumatologist five minutes during my initial exam to diagnose the illness I had been suffering from most of my 25 years. And with perseverance, a positive attitude, and medication, I not only was able to walk down the aisle at my wedding, I was also able to dance at the reception! The diagnosis has also changed my life in many ways since. Due to the need to connect with others in the same predicament, I began a local support group for people with fibromyalgia. The satisfaction I received from helping others through education and support prompted me to work especially hard for my Master's degree in Health Education. I currently work as Director of Patient Services for a health foundation and attribute a lot of my success to understanding what it is like to live with a chronic illness. Anonymous: Sitting in a restaurant, I try to choose an entrée. The entrée names are in Italian with English descriptions. I'll need to read the descriptions to choose. I've faced this challenge before. I know how it goes. I read the first entrée name, I've forgotten it by the time I finish reading the description. I read the second entrée name, and its description. What was that first entrée? I read the third entrée name. What were the main ingredients in the first two entrees--chicken? beef? I'm lost--I'll start again from the top. This time, if anything remotely appeals to me I'll just order it. No use in trying to keep track. OK, here we go-this sounds like dinner. Now I'll put my finger on the entrée I want--hold it there until the waitress comes. I don't listen as she tells the specials, I might move my finger, and I never understand when the specials are read aloud anyway. Did I move my finger? Rats! I'll tell her I need more time… maybe I'll just ask my husband if he thinks there's anything I'd like on the menu. Susan N.: I've had doctors laugh in my face, and tell me they didn't "believe" in FMS, and that really blew my mind. If they had it, they'd darn sure believe it. I was shocked at their attitude... I had to ignore the ignorance and uncaring of those other doctors who would not admit they couldn't help me, and instead chose to make me think nothing was wrong with me in their opinion. I was suffering and had no choice but to continue seeking help. I only go around others on "good" days, when I can try to act more normal, and not let others see how bad I can feel sometimes. It's almost embarrassing, but I'm fast getting over that problem! … I've been accused of being depressed, but I wasn't ever before, and I'm not now. I'm unhappy that my quality of life is dwindling with no hope of improvement (and who wouldn't be??!), but I will fight it to the bitter end. ... I'm not a person who likes to be sick, or take medication, but I will now do almost anything to get relief from constant pain on every single inch of my body, including pain inside. Brian R.: Soon after we were married my wife was diagnosed with CFIDS and FMS. Everyone knows the wedding vows "For better or for worse, in sickness and in health..." and I said these vows thinking that any life altering sickness we might contract was well into the future. I assumed wrong. Everything changed shortly thereafter. The woman I fell in love with on the outside was no longer there, the slightest physical activity hurt for days, she was always fatigued but yet not able to sleep and soon she was unable to continue in her career. Our dreams of starting a family are for now on hold. …regardless of what else this disease may throw at us, I will always love her.
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