My Story

A little over a year ago I was an active, driven, and successful woman. I was a single parent with two children, a full-time college professor, and a full-time doctoral student with many hobbies. I exercised nearly every day; walking, running, strength training, yoga, Pilates, and various dance classes kept me active and in shape. My fiancé and I loved to hike and bike and our family would go camping and canoeing every summer. I loved the outdoors and spent as much time outside as possible. When I wasn’t outside I was seeing a play at a local theater, going to the symphony or opera, going to the movies, art shows, craft fairs, whatever struck my fancy. I never sat still. I was always on the move. That all changed drastically in March of 2006.

It all started in October of 2005 when I was volunteering after Hurricane Katrina. I had been deployed with the Red Cross to New Orleans and was working in the Ninth Ward and St. Bernard Parish providing mental health services to hurricane survivors. The days were long and the conditions were harsh. I lived in a shelter with about 100 other volunteers and we worked 12 hours a day. I loved what I was doing. I felt useful, like my life had meaning and purpose.

On day 5 of my two week stay I woke up and my face was swollen up. I saw the staff doctor and he said it was likely a mold allergy. They moved me farther from the mold growing in the shelter and things cleared up. I continued my work and didn’t think much more about it. Then on day 12 I woke up so exhausted I could barely get out of bed. I decided to take the day off and sleep. I knew I needed the rest. I hadn’t had much time to myself and the long work days, crowded living conditions, and lack of sleep were getting to me. I enjoyed me day of rest and the next day went back to my routine. I left Louisiana two days later and went back home, back to my life.

Once home I jumped right back into my old routine. I went back to my mothering duties, worked full-time, and continued with my doctorate in psychology. I continued to exercise and remained active in all my usual ways. Something didn’t seem quite right because I was quicker to tire than I had ever been before but I chalked it up to stress and too many responsibilities. I kept going.

In November of 2005 I got a really bad sinus infection. They treated it with antibiotics but it never really cleared up. It kept coming back. I had four more by March of 2006. Then in March I got really sick. So sick I ended up in the emergency room because I got so dizzy I couldn’t even stand up. The doctor there gave me a steroid shot to reduce the inflammation in my ear and sent me home. Two weeks later I was in the hospital. I couldn’t walk. My legs did not want to go. I felt like someone had put a thousand pound lead suit on me. I couldn’t raise my arms to brush my hair. I couldn’t talk because it took too much effort. I couldn’t swallow, my vision was blurry, I was dizzy, I had a strange rash on my arms, I felt sure I was going to die.

The doctors ran every test known to man. Nothing. How could that be? How could I be that sick and they find nothing wrong with me? After three days they sent me home with follow-up appointments and visits to specialists. Over the next seven months I was poked and prodded and subjected to some pretty painful tests including a muscle biopsy. The diagnosis went from Myasthenia Gravis, to Multiple Sclerosis, to Hypokalemic Periodic Paralysis, to Polymyositis, to a brain tumor or possible cancer. I was not getting better yet nothing was wrong. I was convinced I was going to die of some mysterious illness and even saw a lawyer and wrote my will. Finally, after months of agony, I was sent to a neurologist at the Mayo Clinic in Rochester, MN and was told I had CFS.

I was crushed. How can this be? How can that be my diagnosis? Doesn’t that just mean you are tired? I am so much more than tired. I can’t possibly have chronic fatigue;-I don’t even sleep very well! No treatment, no cure, what do you mean? As I sat in that doctor’s office, tears streaming down my face, my mind raced with these thoughts and so many more. What did this mean? What was going to happen to me? There were no answers.

For months after the diagnosis I refused to believe it. I wouldn’t even talk about it or tell anyone. I refused to read anything about it. I just knew the diagnosis was wrong. It had to be something else. It had to be something they could fix. I am only 39, I would think. This can’t be my life. There has to be something wrong with me. Something they can treat. How had I become this person who could no longer shower on her own, could barely get out of bed, and was almost completely reliant on others for her care and the doctors be unable to treat me? How could not one single test show what was wrong with me? I was angry and I was in denial. I wanted answers and treatment. I wanted to get better.

Time has gone on and it is now almost a year and a half since my trip to Louisiana. Almost a year since I became completely disabled. I have finally started talking about my illness. It has been very healing to talk about it. I have told my family and friends and I started this blog. I have finally begun the long journey of acceptance. But as I accept what is happening to me I refuse to become complacent. I may be sick and my life may have changed dramatically, but this illness cannot change who I am or what I want in life. It may alter what I can do physically and even mentally at times, but it can’t change my hopes, my dreams, my desires, or my soul. I am a fighter. I will fight this disease and I will win. Winning may not mean that I recover, but it will mean that I will go on living and I will live life to the fullest. I will continue to enjoy my family. I will find new ways to be active with them and on my own. I will complete my doctorate. I will find ways to feel productive and fulfilled. My life will have meaning. I will fight.