Myasthenia gravis

I had a neurologist in Vermont who prescribed both this med and Mestinon because they have different qualities. One is faster acting, the other longer lasting. Now days most docs only use the Pyridostigmine Bromide (Mestinon). Researchers are working on a med called Monarson that requires only one dose a day. That would be great!

My insurance only pays for the generic Pyridostigmine. It doesn’t work anywhere near as well for me as the brand name stuff. I get around that a little bit by also using Mestinon Timespan. That only comes in brand name. I’ve often thought there should be a pump like diabetics have for insulin. It sure would be fantastic to have a constant dose instead of going through the peaks and valleys.

This video is taken from an old film, but it’s just as true today. I can be like the woman in the video, take my Mestinon, and 20 minutes later I get perkier. Unfortunately, the longer I have MG, the less dramatic it gets. I stay weak no matter what, but do improve some.

I liked the dog video because you KNOW that dog is not faking it or trying to get sympathy. For some reason I will never understand, healthy people tend to believe us folks with myasthenia are faking it. If only God would let them try out my disease for a day, they would all shut up :-) And I bet they would suddenly get a whole heck of a lot of respect for what I accomplish despite this $#@!%%!! disease!

Published in: on May 13, 2008 at 11:25 am Comments (0)
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Am I Frustrated?

Yup! I can’t plant my square foot garden until I put the grid system in place. I have the wood, I have the nails….but where the heck did my hammer go? I’ve torn apart my van and apartment looking for it. I found the nails and saw I used for this project last time, but no hammer ;-(

This has turned into a bit of a philosophical contemplation. When you have the right tools, life is easy. Ohhhhh…that is so true in so many realms!

In Vermont I would just go find a suitable rock to pound in the nails. There are no REAL rocks in this part of Florida. Suddenly I’m stuck. The lack of a hammer is holding up everything.

It’s a lot like the missing link of strength in my body. Not only is an object missing, but so is my strength. I’ve been noticing the lupus redness has returned, my tongue is swollen and when I was outside, my strength slipped away thanks to the myasthenia gravis. Every few steps my knees buckled under me and I could hardly lift my feet.

It’s pleasantly cool this morning…and I’m already this weak ;-( I might give up my week long break from MMS and start up anew. If the symptoms go away again, I will know it was the MMS that did it.

Gee…I had big plans for this morning. I was going to go over to church and shovel dirt into my raised bed walls. Hah! It’s all I can do to type at the moment. I keep thinking that some time in my life I accidentally prayed for patience :-P I guess I still have a lot to learn. Sigh….

I found this video of a dog with myasthenia gravis. Docs do this same test to people. It’s pretty dramatic! If this quick acting shot works, you know the person or animal has MG. Too bad it only works that way a few minutes! Patients are then prescribed Mestinon which works a lot the same, but less dramatically. I’ll never forget my first dose of Mestinon, though! I was like that dog. Suddenly I could raise my hands in the air and twirl in circles. I drove Heather crazy with my new found happiness at NOT being weak and wimpy :-)

The purpose of life is happiness

I talked to my daughter today about a young man going through a crisis. He wonders if this is all there is? Will his time on earth be remembered? Will it make a difference? I wanted to shout YES!!!

I realized how lucky Mormons are to have it all spelled out clearly…and happily :-) I had formed my own opinions about life’s meaning, our salvation and purpose, God’s love and eternity, but it never all came together as a cohesive, joyful, blessed plan until I understood what it is to have an LDS perspective and foundation. Here is a great article…

The purpose of life is happiness. The plan of salvation breaks the purpose of life down into four main missions in mortality: receiving a physical body, obtaining personal perfection, acquiring prerequisite knowledge, and forming eternal family units. Read the rest HERE.

Knowing that I am a beloved child of God makes me feel sooooooo much better about life. My existence has purpose and meaning. Tonight I have been pondering that while listening to BYU scripture discussions. Finally I had to pause the program and write. God loves each and every one of us dearly. The worth of a soul is great. Once you truly understand that, life becomes more joyous and focused.  Never forget that God made you in his likeness and has saved you until this time in history to be brought forth in a body. You are very, very important!

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