Since this is a blog about my life, I will, from time to time (not often) write about how our lives have changed since Stan was diagnosed with Myasthenia Gravis in June, 2009.
Myasthenia gravis is a chronic autoimmune neuromuscular disease. It is caused by a defect in the transmission of nerve impulses to muscles. It occurs when normal communication between the nerve and muscle is interrupted at the neuromuscular junction.
Are you totally confused? I know….so are we. Just when we think we have it figured out, we learn something new.
Some days…. walking is difficult with problems with balance.
Some days….shaving takes so much effort.
Some days….getting dressed is a major feat.
Some days….talking is exhausting and speech is slurred.
Some days…..
We adjust, we plan. We have figured out that maintaining a normal routine is good. This usually includes several hours of rest. We’ve learned that it is very possible we will have to cancel plans we have made due to unexpected weakness. In fact, we hesitate to make advance plans anymore.
We celebrate the good days. Being able to play a round of golf is a good, good day!
We love home….there is no place we had rather be.
Thank you for listening and caring.
5 comments:
Betty - thank you for sharing. I do think of Stan often even tho he doesn't know it, and send up little breath prayers.
I also read your blog from time to time (when I remember) and I love reading it. You have such a talent for writing.
Keep up the good work
Carolyn
I love you both and think of you so often. I watch your blog almost daily, and love looking at your pictures. Sometimes, I feel so far away, and wish that I could be closer. Know that you are in my thoughts and prayers more often than you realize...the good days are blessings. Love you both,
Cindy
Betty,
Thank you! I hope today is a good day. Your writing is beautiful. I so enjoyed perusing your blog. I tried to become a follower...we'll see if that was successful! Love to you and Stan,
NW
Hey Betty,
Your blog is awesome! One of my favorite books has been the Kite Runner as well. This interest led me to a series of books by a lady muslem who lives in the US. She wrote numerous books about women in the ruling class in the middle east as well as some in eastern Europe. (forget her name just now, but read everything as quickly as I could get them).
I am so glad you ARE having good days. That is aweful to deal with but better to have Stan and deal than not.
Thanks so much for sharing! The blog is just like you, so very creative and fun!!!
Give Stan a big hug! I love you all.
Ann
Betty,
Thanks for sharing. I miss seeing you and Stan at church. Hope he is better and you can come back soon.
Sheila
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