Now that I know I have Myasthenia

Now that I know I have Myasthenia

By Debbie Prude

 

 

 

My fifth period, seventh grade Texas history class was reading about the Seven Cities of Cibola; for some reason, I could not pronounce the word “treasure.” The word “treasure,” which means something precious, has little to do with the disease myasthenia gravis. Now that I know that I have myasthenia, certain things make sense to me. I had noticed an inability to pronounce certain words; I often choked on drinks; and, I had to make a concentrated effort to swallow food. For some reason, I thought all of this was associated with sinus and allergy infections. But, when I began to slur words in conversation and sounded like the monster in “Young Frankenstein,” I knew something was not right.{{more}} I remembered a friend from Killeen was diagnosed with this same disease many years ago. I had many of the many symptoms she had: difficulty chewing and swallowing, slurred speech, drooping eyelids, and becoming so tired that continuing my normal activities was all but impossible. At the end of my school day, a two hour nap was a necessity. Some Saturdays, I literally slept the entire day. My weekends were primarily spent resting and preparing myself for the coming school week.A simple blood test in October of 2006 confirmed that I did have MG. My family doctor referred me to a local neurologist; he then referred me to an MG specialist in Dallas. This doctor in Dallas treated me, but, not as aggressively as I felt I needed. I went back to my family doctor and asked for a referral to the University of Texas Southwestern Medical Center to find another specialist. After further testing and evaluation, my UT doctor suggested my medication be slightly changed. According to him, my disease is stabilized, but not in remission. Myasthenia gravis, a form of muscular dystrophy, can affect any muscle group in the body. My condition is primarily in my facial muscles. When I am tired, my right eyelid droops, chewing and swallowing are difficult. In 2006, after an especially long week at school, I was so exhausted that I asked my mother for a bowl of potato soup for dinner. I spent forty-five minutes trying to get that one bowl of soup down. I only choked three or four times – that was a good night! Now that I have been in treatment for what will be four years this fall, I know that trying to have a meal while I am extremely tired is not a wise idea. I go through times when certain foods don’t agree with my stomach; some spicy foods and fibrous vegetables are difficult to tolerate. Late nights and time spent in the heat are hard on my stamina and often cause an upset stomach.On a daily basis, I try to find the blessing in all of this. Some days, the best I can do is to remind myself that I do not have cancer or leukemia. I often resent the constant medications or having to go to Dallas to go to the doctor when I have other things to do. But, I know there are people who pray for me, pray for a cure, and contribute financial support for finding a cure. Those prayers and people have become my blessings.Please join us and show support for the fight against Myasthenia Gravis. Please visit us online @ http://www.nwtcmg.org/ or call Lydia Long, Abilene Support Group Leader, at 325 676 4068 for more information about our next meeting.