I was once a vibrant, active person with a lot of dreams and possibilities. I married and had three beautiful boys. In my early twenties, I was diagnosed with rheumatoid arthritis, and began the odyssey of doctors, pills, needles, and pain. Somehow, I was able to dig deep inside myself to find the strength and courage to raise my children by myself (I was divorced after 12 years of marriage), graduate from college, and become very successful in my career with the Department of Defense.
During my career, I traveled extensively, briefed the Assistant Secretary of Defense at the Pentagon, worked as Chief of Protocol and Public Affairs Officer for my agency, and lobbied congressional representatives. I loved my job! Making a positive difference in the lives of others was my chief goal in life.
Throughout my college and federal government careers, I had numerous surgeries and treatments for my arthritis, for a total of four total joint replacements, one ankle fusion, and countless IV infusions. But alas, something so devastating happened to me, that all these vital roles in my life were not only threatened, but all but destroyed forever. That "something" is Fibromyalgia. In the past few years, I had noticed that I just wasn't myself. I wasn't bouncing back after medical treatments, whether they were surgery, medications, or my IV steroid treatments at the hospital. My work was suffering; my life was slowly, but surely coming to a major halt, and I didn't know what was wrong.
I kept going to my rheumatologist, who continued to treat me for my arthritis, but it became clear that the previously successful treatments were no longer working. Finally, in the summer of 1999, a diagnosis - FIBROMYALGIA! That one word has inexorably altered the path of my life forever! Finally, an explanation for why I couldn't sleep, spending countless hours at night trying but without success, waking bleary-eyed in the morning, dragging myself to work, only to go home after a couple of hours. Finally, an explanation.
Well, after many years of overcoming any and all obstacles placed before me (including fire, divorce, poverty, two children with ADHD), I finally had to throw in the towel and admit defeat. My last day of work, which only lasted four hours, was August 6, 1999. I filed for disability retirement, and after living for seven months with no income other than the kindness of my friends, I finally began receiving my small stipend. During this time, I was also virtually bedridden, not knowing the warm sunshine, the company of friends, or even dinner or a movie.
Lying in bed with nothing but my pain and my thoughts, and my tearful prayers and entreaties to God, I vowed that if I EVER felt any better at all, I would do something about this devastating illness that robs millions of Americans of their very personhood. Well, here I am; I'm up, sitting at my computer, writing you this letter, begging you for your help. You have the power to make a difference in our lives, to give us some hope for awareness, for action.
Zoe Albright, Stroke
Betty Bennett, Kidney Disease
Roxanne Bedford-Curbow, Seizures
Valerie Brekke, Fibromyalgia
Lily Casura, Chronic Fatigue
Billie Davis, Peripheral Neuropathy
Penny Day, Chronic Obstructive Pulmonary Disease
Julia DeJesus, Seizure Disorder
MS Patient, Fairfax, VA
Charisse Farmer, Hydrocephalus
Katherine Fielder, Chronic Pain
Zoe Francis, Juvenile Diabetes
James Hines, Hemochromatosis
William Holford, Emphysema
Nancy K, Chronic Fatigue Syndrome
Patricia Lawson, Natural Rubber Latex Allergy
James Locke, Crohn's Disease
Gary Maslow, various
Kathy Matthews, Parkinson's
Andrea Meyer, MS
Gina Owens, Chronic Fatigue Immune Dysfunction Syndrome
Alicia Salas, Chronic Pain
Allison Scott, Chronic Pain
Deborah Serrano, Stroke
Becky Shively, Phenylketonuria
Jennifer Smallin, Type I Diabetes
Joanna Southerland, Diabetes
Alina Valdes, Cystic Fibrosis
Elizabeth Wertz, Seizures
WHAT WOULD YOU DO?
Jose Pedro Greer, Physician
W.F. Nagle, Physician
Ronda Riebman, Exercise
Cathleen Schilling, Case Manager