Crazy roller coaster ride...
I was a 31 year old, spunky, full of life, mother, and high school teacher. What a routine CT scan for a stomach virus revealed was devastating. I had a cancerous mass on my kidney that was connected to my renal artery (not related to the virus or sickness). With no symptoms I found this hard to believe. After numerous doctor visits, and having not one doc willing to operate, I finally found a oncology surgeon willing to operate to remove the mass. After a 9 hour horrific surgery I woke up 2 days later unable to see due to severe double vision. I was rushed back to CT scans to be diagnosed with a stroke during the surgery. After the most awful recovery I was diagnosed by EMG, with myasthenia gravis, and the stroke was eliminated. Since the day of the kidney surgery my life has been a whirlwind. Two years later, still living with double vision, my myasthenia generalized. Some days my weakness is unbearable. Since my oncologist will not allow me to have medications such as cellcept and imuran my treatment has been challenging. Mestinon have me a horrible reaction of feeling "drunk". My main course of treatment is Ivig via a port in my chest wall. Insurance makes routine Ivig difficult. I have had to end up in a crisis on ventilator for personal choice to approve my Ivig. I've been hospitalized in ICU about 12 times. I no longer work. I have a 2 year old daughter now and a 12 year old son. They keep me going. Without them I wouldn't be here. I make the best of my good days and relax on my bad days since I'm unable to work. I've learned to accept my disease. I don't take one day for granted.
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