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For those that think one of these diseases will never touch me. Think again. If you know me, if you're a friend of me ... then you've been touched in some way by one of these 40 neuromuscular diseases. I cannot imagine how different my life would be without the research and services that the MDA has provided for those of us with Myasthenia Gravis. I know for sure, they have made a difference, both in my health, and my learning about the disease when I first got sick. PLEASE give to MDA so other families can benifit from their desperately needed services!
Dr. Suess
"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"
Showing posts with label Myasthenia gravis. Show all posts
Showing posts with label Myasthenia gravis. Show all posts
Wednesday, March 18, 2009
Friday, March 28, 2008
Paradoxical Living
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.
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.
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