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I AM ME AGAIN !
On July 25, 2019, I started showing symptoms of very weak finger strength … then the droopy eyelids, competing eyeballs, and multiple rays with every street light being a Christmas star.
For eight long, suffering and weak months, no doctor could diagnose my ACUTE OCULAR and GENERALIZED MG, despite showing EVERY POSSIBLE MG SYMPTOM, but one. I was finally diagnosed at the second of five hospitals of 2020. A third floor nurse recognized my symptoms on March 24, 2020 … and wrote on my paper pad … “I know exactly what you have. We have patients right here at this hospital that have all your symptoms. You have MG!!!” So she got a doctor friend to do a NEURO-CONSULT and order tests. Thymus fine … but my three antibodies tests were so SERO-POSITIVE with “over the moon” scores … that they repeated the tests again.
I have been IN REMISSION since BLACK FRIDAY 11-27-2020 when I left the fifth hospital.
So I am feeling much better, can drive, see, knee in the garden to work … knowing I can stand … without having to crawl over to a chair, crawl into it and rest … in order to try standing and going inside.
I have been slowly venturing out more driving and to activities, church, shopping for items .. besides necessary meds and food.
David is one very BRAVE SOUL. I can’t leave town. It took 8 months to be diagnosed and every doctor failed me …. and even when I KNOW … I HAVE MYASTHENIA GRAVIS, I am still trying to educate my new doctors (except for my terrific NEUROLOGIST) about what is this disease they never heard of … is all about … and why my IMMUNO-SUPPRESSANT therapy makes all my blood tests number consistently SCREWY and ANEMIC. What chance would I have on an airplane or a cruise ship in a strange city to stay ALIVE ??
But now that I AM ME AGAIN, …. I so want to escape, forget I have a fatal disease for just ONE DAY and LIVE. So I pick one day each week and have a … F–k It day .. and escape … see a movie, eat out, go to an afternoon theatre matinee, or walk down around the nearby lake.
Because I had 100% hearing and 100% talking/singing loss for 4 months in the hospitals, I wanted therapy to BE ME … so I went last semester to a MUSIC DEPARTMENT VOICE singing class, 3 hours each Tuesday for one hour credit … at the local community college. Only cost $40 senior rate … and my voice is coming back. This semester I am taking two, one hour credits … a different music class and production class credit sewing in the theatre costume shop. I get out, have fun, meet new people, and help my local community college theatre … totally forgetting for a while, 1.5 years of MG weakness, 5500 MGs of meds a day, … and improperly educated medical people … that gave me a CODE RED … due to ACUTE HYPERCAPNIC RESPIRATORY FAILURE due to an OVERDOSE of ANESTHESIA given to an undiagnosed MG patient … so that I would stay still for MRI tests. So take pleasure in your small TRIUMPHS. It helps you forget the dark days from before.