Dr. Suess

"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"

Monday, June 09, 2008

A Thank You and A Why

Recently, I mentioned that it had been recommended to me to wear an eye patch when I get fatiqued (because of double vision) but that my latex allergy made it difficult to follow through.

Fellow Blogger, and quilter, extraordinaire, Ramona Bates, surprised me by deciding to do something about my problem.

I recieved them last week. I knew that I would use them, but am a little surprised by how much I'm using them. I don't know if I'm just overly tired from over extending myself ...or if the relief they bring is so welcome ... or if they were just that needed. So THANK YOU, Ramona!
Sixteen years ago when I was diagnosed with Myasthenia Gravis, one of the first things they told me was to get an eye patch for the double vision. They also suggested using one to PREVENT double vision.
My neurologist also said that it would decrease overall fatique. I never quite understood that ... but found rather quickly that he was telling the truth.

As I learned about Myasthenia and how muscles work, it started to make more sense to me how and why the eye patches not only help with double vision, preventing it and helping with the fatigue factor.

Myasthenia Gravis is an autoimmune disease that effects the voluntary muscles. If it can be moved, the muscle can be effected. MOST Myasthenics are effected in the eye lids first, then eyes, then it moves down from there.

I was a bit odd, in that my mouth was the first to be effected, my eyes next and then my eye lids came after my whole body was effected. My eyelids are still not all that likely to droop. When they do droop ... I'm in a bit of medical trouble and respiratory issues tend to be right on the heels of my eyelid droop.

There was one time that I was very sick with bronchitis. The doctor wasn't available so I saw a Physicians Assistant that I'd never seen before. He wasn't pleased with my infection, but wasn't really alarmed at my appearance. My husband, wanted him to get my doctor. He kept saying "Look! She's in trouble!"
The PA finally said "She looks like a patient with Myasthenia, she has myasthenia, I don't see the issue."

My husband finally said "PLEASE go tell the doctor what you've just told me."
So he did. The doctor came rushing into the exam room ... to where I got rushed out and admitted into the hospital. He knew that when I LOOKED like a Myasthenic ... I'm in trouble. I wound up with a series of plasmapheresis to pull me out of the crisis.

The double vision I experience, however, is FAR more frequent. Almost daily, if not daily. By anywhere from 7 to 9 pm, I'm getting a bit blurry eyed, by 9 or so, I'm crosseyed. By 11, anyone looking at me can see that my eyes do not track. This, is even on a good day. Get myself tired ...and it happens early ... today ... I woke up with my eyes not tracking. Double vision by about noon. OOPS.

Here is a PDF file from the MGFA That gives coping hints for those with ocular MG (effecting the eyes only. It is usually also given to those with generalized MG.

One of the reasons eyes are so very effected is that, in MG, the more a muscle is used, the weaker it gets. Over use just wears out the muscle. Eyes, almost never get rest ...while awake, they are constantly moving, and changing what they are doing, even subtly. While asleep, they move rapidly during REM ... they simply are a hard working muscle group that the immune system has decided to target.

When double vision happens, you put the eye patch on, and you only are looking out of one eye, which means you are only seeing one image. It allows the covered eye to rest, and to not work as hard. It is VERY important to not keep the eye patch over just one eye, or to wear them all the time or you can actually damage the eye sight. But to give the eyes a break, you can wear one for an hour, then switch it, and the eyes will feel like they've been given a new lease. The facial muslces that help to assist the eyes, stop straining because the eyes don't have to work as hard.

Then because the face is more relaxed, the shoulders and neck tend to not have to work as hard ...and it snow balls into the whole body working more effectively.

It also reminds you to ..um ..er .. take it easy and that you might be a bit beyond your limits if it's too early in the day.

This last friday, I did some deeeeeep cleaning. I got mad at my kids and did 12 loads of THEIR laundry in one day. Then cleaned out my kitchen cabinets, re organizing them. (I get mad, I clean). I also did a few other deep cleaning gems that needed attending to, but could have waited ...or done by teenaged boys.

Then Saturday, I decided that I wanted to try the Butternut squash soup I'd been seeing on Food network ...and I cooked it. It took a good part of the day. I also made a pork shish kabobs. I spent 8 hours total in the kitchen.

I went to pay the Macy's bill ..and found a treat in my car. An abandoned puppy (complete with note! telling me breed and age)!! Which, by the way is Black lab/ Austrailian shephard. She is 8 weeks old. She has stolen our hearts and we've decided to keep her ... so house breaking and playing, and training ensued. Including up in the middle of the night to take her outside. We've named her Hershey.
I thought about making the boys do it, but realized they were leaving for camp on Monday (today) morning ..and figured I might as well do it myself.

Then Sunday, church, where I worked children's ministry and we had a church picnic ... in the sun and heat. Then home to get my kids ready for church camp. Which included a 10 pm run to walmart to get last minute stuff ..and struggling to get them to pack at midnight.

This morning started out at 7 am ... to finish running to get stuff they hadn't remembered they needed and didn't have (bathing suit!) and to get an umbrella because I don't own one ...and well ..housebreaking in the rain.

All that ...and my eyes are in desperate need of those patches!! I asked my son to take a picture of me wearing them. I put on a big smile and then took them to camp. Finally got them opened and was shocked to see ... my smile! Where is it???
MG strikes again!

So, while I look like I'm not smiling ... I am, it's an MG thing. The muscles are worn out. patch2

Here is a picture of me back in February with a friend. I wasn't as tired, and you can see the difference in my smile

JenPkCC's concert

June is Myasthenia Gravis Awareness Month. Famous Myasthenics are Aristotle Onasis and Roger Smith (Ann Margaret's husband). There is also a soap opera actress who has it, as well as her character, but I never can remember who. There have been a couple of football coaches with it ..and a couple of years ago, a college football player found out he had it mid season!

So, now that I've posted ...and kids are tucked away in southern oklahoma at camp .. and Hershey is having fun with Don ... I think, I will tuck myself into bed. Thank you, again Ramona!


  1. You are beautiful any which way.

    Stay out of the heat and heal up, Baby Blogsis.

  2. Pk, I'm glad that gorgeous puppy found aa safe/loving home with you and your family. What a suprise that must've been to see in your car! :)

  3. Hershey is a doll! Someone wise sent her to your family.

    Ramona is another one and you look smashing in your eye patch. Piratey pizazz!

    MG sounds really weird, like lupus or MS -- not too consistent, is it? Just one weird thing and then another... Best to you!!!!


  4. TL ... MG is a bit strange, but mostly because of the overuse factor. In most muscles, the more you use them, the stronger you get, in MG, the weaker you get.

    With lupus (which I have) and MS ..the symptoms can come and at any part of the body and have any number of symptoms. MG is pretty straightforeward and a neurologist who knows what they are looking at, will be able to get to it. 80% are antibody positive, and recently, they've discovered a new antibody (MUSK) and it seems that the 20% that were antibody negative ..MOST have that antibody, except a few rare people who only have the ocular form.

    Occassionally, MG can hit very hard, and very fast before the antibody count can accumulate, so diagnosis is delayed. OR ..you'll get a doctor who refuses to see a zebra in their exam room.

    I will sometimes come across a doctor who insists that my eyes have to bother me first, because that's what the text books say MG does. I finally got wise to that and started to say "Sorry, my eye lids don't droop for you, my MG never read the medical text books"
    That gets them to see ME as an individual myasthenic.

    MOST patients who are diagnosed can get fairly good control because of the advances in treatment, as well as patient information.

    Then you get the occassional stubborn person like me who tries to pretend to be 'normal' and works her way into a frenzy, then a flare ... I do this about 6 times a year. Which, is better than it used to be ..it used to be about once a month.

    I'm learning. ;o)

  5. that was really nice of her to make that patch for you. :) very thoughful. Sounds like you've been SO busy..no wonder you're tired. The puppy is adorable!!!!

  6. What a great post. Knowledge is power and being so informed about MG will make you be the best advocate for your own self! And I can see you smiling in the photos loud and clear :)

  7. Oh...Susanne Rogers, Maggie Horton on Days of Our Lives...don't ask me how I know that as I've never watched it..Aristotle Onassis too.

    Looks like a fabulous smile to me.