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The day I was diagnosed with Myasthenia Gravis, the staff neurologist told me to be happy I had MG instead of MS. He told me this was one of the more manageable neuromuscular autoimmune disorders and that I could lead a fairly normal life with treatment. Now that I knew what was wrong, I mapped out in my head what I could expect, because in my mind the meds would make everything ok. They didn't and brought along problems of their own.

I was put on Prednisone and Mestinon. Prednisone is a steroid which suppresses the immune system to keep my body from producing antibodies which attach my neuromuscular junction causing muscle fatigue and weakenss. Prednisone has horrible side effects, a few are weight gain, osteoporosis, depression, anger, and hair loss. Mestinon is a drug which makes the receptors at the neuromuscular junction work better to receive signals from the brain. Mestinon isn't quite as bad as Prednisone, but it too has side effects and is hard on the stomach.

After being in the hospital and returning to work, I was told by a regular neurologist that I could not work until I became stabilized. I notified the company I worked for, I did not qualify for FMLA or Short Term Disability as I had not worked there for 12 months. I lost my job less than a month after my diagnosis. I learned quickly that my life will never be normal again. Some days I felt great, I could go to the store and run errands to come home and cook just like I always did. Some days I could not get out of bed. I began to gauge how good a day would be based on if I could brush my hair out, if I was too weak to brush my hair I knew I would be in bed, if I could brush my hair I started planning everything I needed/wanted to accomplish for the day.

I began thinking, am I ever going to be able to work a regular job, how am I going to make money to survive? My husband works, but doesn't make enough to pay our bills combined, would we have to sell one of our cars, or move to a cheap apartment? I know material things shouldn't matter, but I worked hard for my material things and I don't want to give them up. So I have decided I will not go on "disability" even though I am disabled. I am limited in what I can and cannot do, but I am not ready to give up and leave the workforce. I picked up a job doing some part-time work from home for an awesome dog groomer and have a full time customer service position starting that is strictly from home at the end of June.

June is Myasthenia Gravis awareness month, throughout the month I am going to document my diagnosis and my treatment to help raise awareness of this devastating disorder.

Till Next Time:
T.