But You Don't Look Sick...

http://www.butyoudontlooksick.com/2009/04/my_roulette_kinda_life.php#more

If you are in need of some reading material, here is a little essay written by a lady that kind of sums up how I feel right about now. My favorite line is "The disease is in control, I have to accept not being able to spin the wheel and I have to just live with the results. Hopefully, those around me will learn to accept this too." So true!!


Another example is called the "Spoon Theory". I'll shorten it for your reading pleasure..

I start the day with 12 spoons. Each time I do something it take a spoon away. The spoons represent energy or movement. So, you say you first get ready for work. No, I say I wash my hair-minus 1 spoon.

Brush my teeth-1 spoon
Dry my hair-1 spoon
Get breakfast-1 spoon
Eat breakfast-1 spoon
Put my shirt on-1 spoon
Pants-1 spoon
Walk into work-1 spoon
Work-Lets just be conservative and say -3 spoons which we know would be more
After work-1 spoon left... what shall I do.. shower, eat, clean, oh and if I do more than that one spoon then it takes away from my 12 spoons that I start with tomorrow..

Thought this was a good little example of how to explain to someone about a neuromuscular disease like CMS.

My appointment is still set for May 26th in Minnesota at the Mayo Clinic. I am working daily to get that moved up asap, but I have to jump through the hoops first and beg. I have already done some begging this morning with them on the phone, so maybe if I nag them daily I will be in Minnesota in no time! Please begin to pray for this trip and for some answers and help!