I don't know if I've ever gone this long without blogging when I've had access to a computer! Eeeps!
March 1992 ... I was unable to dress myself, I could not chew scrambled eggs, I could not get up from a chair without help, and I could not hold my head up. Breathing was something to be concentrated on. Swallowing? Well, that was a trick. There was two of everything no matter where I looked, and on many occasions, there could be as many as five.
Walking was a trick, and I could wind up on the floor without warning.
As often as not, I could not get a fork from a plate to my mouth.
I had a 2 and a half month old baby, picking him up ...impossible. Holding his 4 oz bottle ..too heavy, I'd drop it. I was as likely to drop it as not. To hold my son, I had to have help getting settled into the couch where my arms were supported on both sides, then they placed him in my arms. Then someone else put the bottle in his mouth, and place something under it to support it. I could not burp him, bathe him, nor change his diaper.
The second Tuesday in March, I fell and injured my shoulder, that night they took me to the emergency room. To get me down the stairs, my mother and husband took the couch cushions and let me fall onto the porch, then sit on each step as I slid down each stair. They then helped me to stand up, and get me into the car. When we got the the ER, I could not get out, someone from the ER had to come lift me out of the car.
In the ER ... 2 Residents from the OU College of Medicine were called down to see me. One, a Dr. El Rehab (Knight in Shining Armor 1) and the other, I wish I could remember his name, I think it was Dr. Fisher (Knight in Shining Armor 2), both examined me independent of each other ... came together after examining me, looked at each other and jointly said "Myasthenia Gravis"
They admitted me for testing and beginning treatment. I'd not understood the word they'd used ..and was scared to death. My husband made a crack about "it's all Greek to me" when he was talking to my mom. We still laugh about that comment.
Twenty four hours later, an EMG, full evoked potentials, tensilon test later .... I met my new neurologist Dr. M (forever hero and political talk buddy) . I was told I had a disease called Myasthenia Gravis. "mya what?"
They explained to me that it was an autoimmune disease that was attacking my muscles, including the breathing and swallowing muscles. The difficulty with it, is that medications and surgeries ... can really complicate the disease ... so, with this disease ...medications and surgeries would only be given if absolutely necessary.
OK ..fine! who wants to take medications and have surgery anyway??!?!?
The next sentence they tell me ... I'm going to be taking Mestinon .. Prednisone and Imuran ... and ... I need to have my thymus gland removed.
um. OK.
They then go over the risks of the prednisone and the Imuran ... hey! these are not light weight drugs here!! These are serious stuffs!!!
Then, I timidly asked "where is the thymus?"
"it's located right behind the breast bone, it's that thing that most people think is the heart"
"gulp"
OK ..so you get it out how?
We cut open your chest ...and my ears started to ring and I don't remember the rest of the conversation ....
In the following 16 years ... I expected that I'd not have many medications or surgeries ..after all ..they said that it'd only be given if absolutely necessary and surgeries are only done if NECESSARY ...
however ... here I am .. 16 year later ... and as of this week, with the new addition of Plaquenil .. on 24 medications ...and having had 15 surgeries with my orthopod wanting to do another on my shoulder.
OK ...so ... yeah, all of my meds are necessary ... every few months one of my docs go through all of them desperately trying to wean some out, and they can't ...
All of my surgeries (well, maybe not one of them) have been absolutely necessary ...
but still ... 16 years ago, I expected to have a life of few meds, no surgeries ...
instead I got extended meds and extended surgeries ...
go figure.
Dr. Suess
"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"
wow--sounds like you've gone through SO much in those years. makes my junk from the last 16 years seem like nothing compared to what you've gone through. May God Bless your life fully my friend--Linda
ReplyDeletemaybe its best not have expectations in life- life seems to have its own
ReplyDeleteI had such high expectations for myself when I was younger. They were all torn apart. It happens. After my life was ripped to shreds, I am building a new one.
ReplyDeleteI have missed your entries! I'm glad you updated. :)
Hi! I also have MG. I am 72 yrs old. I went through some horrendous times before I finally got some help. I thought for sure I was looking at a feeding tube. Had problems speaking and all the rest you are familiar with. Like hitching up my pants or lifting my arms over my head. My family dr was positive I had had a stroke. The usual tests for this were negative.(good news)I was finally diagnosed with the tensilon test in Aug of 03. My nuero immediately put me on mestinon.(always the first med for mg). It helped me but still left me having difficulty eating etc and still restrictions in my arms etc. And of course the always weakness and fatigue. I had 12 IVIG's which did not help. He has always wanted to put me on prednisone but I have resisted. Finally he put me on azathiaprine(Imuran) and it has been a great help.Requires constant monitoring of my liver and cell counts every few weeks. My overall strength has increased a lot and my chewing and eating is nearly normal. Well most of the time anyway. There are still those occasionaly mad dashes to the bathroom while trying to eat. I Hope you get some help and relief. This disease is also depressing at times. Just wanted to pass along some of how I was treated and what helped some and what didn't. People just don't understand what mg does to us. We could write a book on all the little day to day things that result from this disease. Well- as usual I tend to go on and on. hugs.
ReplyDelete