After searching for answers and finding only more questions, anger was the only emotion I could muster for the medical community and its poor standards of care. When I attended the educational seminar at Fibromyalgia & Fatigue Centers, I expected more of the same. But instead, what I encountered surprisingly restored my faith in the medical industry and even gave me hope.
Although I wasn’t aware of it at the time, my struggle with Lyme disease and Chronic Fatigue Syndrome hit me hard in January of 2005. My doctor diagnosed me with shingles, likely brought on by stress, resulting in Fibromyalgia. I was shocked. I was in the best condition of my life and in my second season of triathlons. I became so weak and tired that I couldn’t get out of bed for more than a few hours at a time. As a stay-at-home mom, I woke each day to a list of activities that included: caring for my home and family, intense daily workouts and volunteer work. As a family, we traveled frequently and enjoyed snow skiing, bike riding and hiking. But by this time, in order to function, I had to give up everything. I soon forgot what it was to wake up and simply live my life. Every minute of the day revolved around my illness. I sought help, but to no avail. Several doctors even suggested that it was all in my head.
Relationships became stressed as a result of my illness. My kids began to see and interact with me very differently, witnessing my fall from super mom status to bedlam, despite my best efforts. There became a major disconnect and many times I was in such pain that I didn’t even care. I was just trying to survive. My friends knew about, but didn’t understand my struggles. My husband was the one person who truly knew how sick I had become. His infinite patience and positive attitude were in great part the only reason I kept going most days.
My journey to wellness began when I attended the patient educational seminar at FFC. I had an appointment initially, but at the insistence of my then-current doctor, who said it would be a waste of time and repeat tests, I cancelled it. The individual I spoke with at the Center suggested I attend the free patient educational seminar. The next evening, as I sat there listening to all the seemingly infinite list symptoms associated with Fibromyalgia and Chronic Fatigue Syndrome and the possible reasons for the disorders, I felt a huge sense of relief. I no longer had to be the detective. There were answers and people who believed me and understood my suffering. Afterwards, I immediately reclaimed my original appointment.
The day of my first appointment, I could barely walk and was extremely fragile both physically and emotionally. I’ll never forget how one of the staff handed me a tissue and said, ‘It’s alright to cry. It’s part of the disorder’. They treated me with such dignity and I knew then that I had found the help I had so desperately looked for and none could previously provide. Three weeks later my life changed forever during my second visit. As we reviewed my lab results, the doctor explained that the test for Lyme was elevated and it was very likely that I in fact had that disease and not Fibromyalgia as previously thought. I remember the mixture of happiness and fear. Happiness from finally having a name for my illness and knowing I could once again gain control of my health and fear of knowing the battle would be ongoing.
Over the course of 9 weeks, I was given IV treatments and B12 shots regularly. The staff treated me as if I were their only patient. I continually came in with a list of questions, and someone always took the time to answer or provide an explanation. Throughout treatment, I have kept a journal about how I feel each day. It helps to go back on bad days and see how far I have come. Physically and emotionally stronger now, I realize my good days are becoming more frequent. That would not be the case if I hadn’t strictly followed my treatment guidelines. It gives me a sense of power to know that each day I am doing something to win the fight for my health. FFC saved my life! I am so thankful for the creation of these Centers and all that they are doing for treating patients like me who are suffering with debilitating conditions.