Monday, May 31, 2010

Myasthenia Gravis - A tricky little bugger...

Well, I should have known better, really I have been dealing with the reality of this illness for almost a year now. However, I will not let my hope for remission escape me. It keeps me going, it keeps me positive when I feel good. It allows me to make the most of my life which is greatly limited by my MG.

This past weekend was wonderful. I had my IVIG on Thursday afternoon/evening and the treatment went well. Friday I made it to John's field day at school and we went out to lunch before I crashed for a nap and my mg symptoms sprouted up in the evening with the droopy eye and difficulty walking. Saturday, I spent 5 hours at my dad's pool with the kids, it was a lovely day and I spent most of the time floating on the raft with my 3 year old on my lap going for "boat rides." I slept soundly Saturday night and Sunday we had a three hour swim trip at my dads. I was starting to think that the IVIG and Imuran had magically made the turn to where I would have more normal days than not...not so fast Jen!

So this morning I awoke to my husband trying to get me to breathe properly and get me my much needed Mestinon. My speech was slurred and I could not swallow. He got the pill under my toungue (a little trick I learned from a fellow myasthenic for when you can't swallow) and within 30 minutes I could speak and swallow again. It took another 45 minutes for me to be able to move my legs and get out of bed but I think it is most important to push myself each day to not give in to being bed bound. On bad days my brain tries to win the war and just succumb to the illness but I have two little faces counting on my presence and I will not let them down. Even if it means spending the day in the recliner.

I am feeling a little better but my vision is too poor to drive anywhere and I have the lovely foot drag going on when I walk, hello old friend are my shoes getting beat up! So, today I rest and hope that it will allow me to have a productive energetic day tomorrow. Here's hoping!


  1. Hey lady.
    I'm so sorry you had such a rotten start to the day. After 10 years, I still haven't learned to settle down...when I'm feeling good I go flat out until I just can't go any more. I don't know when I'm going t feel well, so I make the mst of when I do. People always tell me to slow down, but what's the point? It seems so random sometimes...

    I never responded to your question, but yes, I am planning on going to the meeting on June 19. I got my husband to give up a Saturday which is no easy task. He's such a workaholic!

    Can't will be fun to meet you!
    Hang in there!

  2. I must say your spirit is commendable. You are an inspiration for those who are suffering & dealing with this disease. Would like to share with you an article that contains some lifestyle changes & tips to manage this disease -
    Hope that helps.