Tuesday, March 30, 2010


Well I haven't updated in awhile. That would be a good thing on this blog. That means I'm healthy and doing well. As you can see above, I have been living life to the fullest and having a great time.
Dr. Engel sent me a letter telling me that I don't have to email him until next year and that he is really happy about the progress I have made.
I have almost worked a full year of teaching, 8 1/2 more weeks. I have done great and been more active and involved in the students than ever. I do have the most trouble with the weakness in my face. I notice my eyes drooping, my face not perky, and my throat and speech a little slured and difficult to swallow. This could be because I am more aware of what is going on now, and know my body better. My large muscles are doing great, and I am throwing Haley up in the air, and chasing her around the house!
This time last year I was preparing for the Mayo Clinic. I found out on April 2nd that I would be headed North! I wanted to update because it seems that when you are sick, all you read online was the negative stuff and the sickness. It seems when people get well, they stop posting and all you read is the negative. I want some positive. So here is the postive... if you have MG or CMS, you can get better and you can lead a normal life. My suggestion is to pray and find our faith in God and he will guide you through all of your good and bad times in this life.


Anonymous said...

Amen! So happy to have a happy post! We love you!

Anonymous said...

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Ariel Ayanna Wallace said...

Hello, my name is Ariel.
I am experiencing the exact same thing you had.
I am so excited that I stubbled upon your blog while doing some research about MS. I also visited the same exact doctor which is Dr.Engel. I am so amazed at how much we have in common.
If you could please email me I would really appreciate this. I would love to exchange stories with one another.
Hope to hear from you soon : )

Anonymous said...

Hi there!
My name is Jenny, and I have a son with severe CMS. He is 2 1/2, and is trached and vented and also has a feeding tube. We also see Dr. Engel and are in the study with the experimental drug 3,4 DAP. I just came across your blog when I was researching albuterol in CMS patients. This is something we are going to be trying...glad to hear it worked for you!
Best wishes to you!

Kelli said...

Hi! I just found out I have an preliminary abnormal test for myasthnia and I searched for blogs. Yours was the only one that popped up! I have one too and also live in Texas. I also go to Dallas for appointments. Here is my blog: http://intricately-connected.blogspot.com. And email: intricately.connected@gmail.com. Please be in touch!

Susy said...

Hi! Thanks for this blog! It's great to see that everything is going in the right direction! :))
It would be really nice if you can contact me, I would have so many questions to ask you!
I give you my email: susy.pelzer@gmail.com

Hope to hear from you!

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The Myasthenia Gravis reaches its extreme severity when the person affected is not resting because it doesn’t cause any harm when a person is at rest.