Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Ha ha - you will all think I am nuts -- but in learning to cope with this disease I was asked what I like about it... WHAT??? what could you like??
here is the start of my list ---
I no longer have the schlep the costco run into the car or house...
I do not have to feed the horses
My boss says nothing when Im an hour later than normal
I have found a deeper sense of humor
It has taught my kids/family patience and compassion
I can blame a lot of crap on steroids
Most of all -- it has taught me you need acceptance to move on.
My friend mg
Be patient with me
So I can kick your ass
I'm going to try to snowmobile today. We'll see who wins.
Hugs to all
Barb
from West Yellowstone, MT -- I'll try to post pictures.
here is the start of my list ---
I no longer have the schlep the costco run into the car or house...
I do not have to feed the horses
My boss says nothing when Im an hour later than normal
I have found a deeper sense of humor
It has taught my kids/family patience and compassion
I can blame a lot of crap on steroids
Most of all -- it has taught me you need acceptance to move on.
My friend mg
Be patient with me
So I can kick your ass
I'm going to try to snowmobile today. We'll see who wins.
Hugs to all
Barb
from West Yellowstone, MT -- I'll try to post pictures.
I think it's made me a better person. Not that I wasn't already amazing, but everyone can use some improvement lol.
I'm not as hard on myself, and that translated to not being as hard on others.
The last one about needing acceptance to move on is especially true!
I don't have to wash the floors or do the shopping
I have learned who my real friends are
I have learned to enjoy the little things in life, and to be grateful for them
My family has become closer, and more independent
I am able to spend more time painting
I am human and it is ok to cry, be angry, to walk with a wobble or even use a wheelchair and be happy
and most of all, I have learned to laugh in the face of adversity
Deb
Be patient with me
So I can kick your ass (especially this part)
I remember telling my wife and family back in October that there would be no happy medium between MG and me. Either I win or it kills me because I am not lying down for this disease. All or nothing. Everybody kept telling me that I would never be able to do this or that and I would never be the same. WRONG. I still have a lot more to accomplish, but I am winning this one.
Everybody here are tremendous fighters in their own way, you can see it and sometimes read it in their posts. We not only fight for ourselves, but for each other. This place is filled with very special and unique individuals.
I've also learned to have a lot more compassion with both myself and other people.
Having to worry constantly about whether my body is functioning sucks, but it has left much less room for an old train of thought that took up a lot of space: thinking that I'm not attractive enough or that it's important that other people think I'm attractive. I'm grateful to be freed from that.
Learning to be more patient with myself (still working on it!) and others. Knowing that sometimes things just aren't going to go the way I want them to and I have to let go.
Learning to be grateful for things and the people I care about.
I, too, enjoy being able to use the steroids as an excuse for two of my life-long favorite past-times: temper tantrums, and stuffing my face.
Learning to speak up for myself, ask for help, and stop assuming that people can guess what I'm thinking or feeling when I haven't told them.
And, I have received an honorary master's degree in patient advocacy/insurance and billing! Yay.
(Also, Barb, you're in Yellowstone? Awesome, I'm jealous! :)
No more laundry, dishes or vacuuming
Need a nap, take a nap
This site and my family here
I am more calm in general
Not driving long distances (can't go far on the rock anyway)
I'm off the hook if there is an event that I don't want to attend
No more stage fright from singing in front of others, only fright
from someone hearing me sing at all.
MG is an excuse for most anything you want it to be for but I try not to use it as an excuse. More often than not, I have to though. My migraines is another one that often has to be used, sadly.
Well, I guess that's about all I can come up with for now. Thank you for helping me see the lighter side of things.
Hope everyone is well.
Angie
a snowmobile like I used to..but I made fifteen miles. Bit foggy out. Great cookout. Bit of a noodle today. BUT I did it!!!
Back to helena Mt tomorrow...ivig on Tue. Maybe the the shortened intervals are helping :)
Add to my list.... I dont have to load and unload snowmobile..which I have always hated. !!!
My friend MG....this is my new Mantra! Thanks Barb.
I - LIKE - all of you!
Thanks Barb!
- Ross
(... on the other end of the Snowbelt ...)