I decided to change up my blog a little since I have been diagnosed with such an uncommon illness. Myasthenia Gravis is an unforgiving disease that effects the receptors that transmit messages from the nerve to the muscle. It effects all the muscles you use except the heart. Basically it’s a disconnect – my body is attacking itself and it won’t function properly. My best description is when you are in a brown out and lights surge and flicker some work some don’t and then BAM: power is out. I can’t move my arms, legs, head, nothing works, my eyes are in two different directions, my speech is slurred I am as we call it in the south “A HOT MESS!”
I have terrified my husband, my children, my mother and let me not forget myself when I shut down. Four weeks ago I was plowing my own path, doing my own thing, living life to the fullest. Today I am currently sitting in my bed at 3pm because I have done more than I should and I’m so uncoordinated I stumble when I walk. So instead of breaking a hip, here I sit with a great mind and a worn out body. I could say life stinks. I could wallow in self pity. I am 46 and have to walk with a rolling walker in case I get tired I can sit. It could easily be done, I could be Debby Downer but I REFUSE!
I am a Christian, I believe in an all powerful, all knowing, all forgiving God. He is real! I have talked to him twice when I thought I would die and HE alone sustained me. I know I am here for a purpose. I might not be His first choice of an example because I am the perfect example of an imperfect person! The one thing I know that I have to fix that is salvation through the blood of Jesus Christ! He plainly covers the imperfections and I think He used a whole jar of spackle to fix just me! Sorry, I think I’m funny you might not.
I’ve heard the phrase “Life is a journey!” Well I can guarantee you mine is and it will never be boring from here on out! Myasthenia Gravis is like a roller coaster you just can’t get off of. I have good minutes and bad minutes and they might change up in a second! God kept me here and I am riding this journey like it is a full fledged bull ride! I might look stupid, crazy, dumb, goofy or whatever folks may want to call me but I am taking this gift (yes I said gift) God has given me and I’m going to make the most of it.
I am a 25 year nurse and I feel like this is my calling; to educate, inform and hopefully find someone out there that might get something out of it. Even if it’s just one person it will suit me. I haven’t confessed this to anyone personally but I have felt God pushing me toward using this blog for something. I never had a clue it would be through a disease process, maybe I waited to long and He decided to give me a reason. It doesn’t matter, I’m going for it. My God is real; He is not dead!
Anyway, I may also have forgotten to mention I am from the south so hold on to your hats because you might not understand some of what I type. Lawd help if you could hear me read it! It would take three times as long and 10,000 more syllables! Hahaha! I crack myself up!
Stay tuned for more to come! My alarm just went off and it’s time for more meds. Four weeks ago it was one pill a day. Now it’s every four hours and they sneak up on you so I have alarms set. It works! Don’t judge! We are all getting older!
Have a great evening!