Coping With Myasthenia Gravis

I read Nick’s story tonight and know exactly what he means about how friends look at you and think you look well. My 4 closest friends saw me in ICU for 17 days after my first “Crisis” and they will never forget how close I was to death. I never thought I would stop breathing, I was only 46 at the time. Now I don’t care so much what others think, when I park my car in the handicapped space with my sign dangling from the rearview mirror, because they don’t breathe for me, or walk for me, or pay my bills which is getting harder to do. I have learned my limits and sometimes push them too far.

The hot weather here in Houston is horrible for me and my MG Prednisone has ruined my spine and I have several fractres in my back that heal on and off. I have shrank 4 inches in height and have to use insulin now because of all the prednisone which I am still on. Plasmapheresis is the treatment I still have to have every 2 months. I don’t respond to imuran or ivig. I tried cellcept for 6 months and had no luck. The one drug that did help was rituxin, by IV. It’s chemo but I am much better.

My eyes are great but my voice is lower and I do run out of steam by early evening. I know there are alot of things I can’t do like I used to, but there are other ways, maybe slower, yeah alot slower than before, but I got dealt this hand and will play it out to the end. I know in my heart how I feel with this disease, I cry when I’m having a pity party for myself but no-one knows. There are so many people that are worse off than I am, how can I justify feeling sorry for myself? If you’ve ever seen children with cancer, suffering, you really begin to question alot of things.

So I just thank God for each day and trust that he won’t give me more than I can bear.