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...
I never thought I would live long enough to have the tittle "stubborn old lady". You see, that used to be my Mom's tittle.
Even though I have terrible days. Since I am not in crisis, I call this a GOOD DAY!.
At first I was angry that my body seemed to have turned on me. I soon realized I had two choices. Accept or Adapt. Since I have the title, I decided to Adapt!.
I have a walker that you can sit on from when I had my knees replaced, so, the first adaption. Go to the mall with my adapted apparatus. Now, my husband calls it my shopping cart. But, it is the dreaded old lady walker. yuk!! however, the choice stay home or go shopping. Ha, well, since my old title was "Shopping Queen". Watch out for the crazed old lady in the mall. (For Seattle writer, that would be Northgate Mall) Sometime when the MG is not behaving, my husband with have to go get the car and meet me at the opposite end of mall from where I started.
I am known for my cooking. For about a minute, I gave it up. Well, I found this, just the right height stool at IKEA.. I drag it all over the kitchen, doing my thing. Adapting! No more dinner parties, but, my husband won't starve.
We went to Hawaii in January, visiting friends. While my husband went out into the ocean swimming with our friends. I adapted! While sitting in a shallow tide pool area watching kids play in the water, a big sea turtle swam up, looked at me and turned around and swam off. I might have missed this experience in the deep ocean. Some time adaption has rewards.
Elenora is my heroine! She adapts! I have never wanted to nor could I ever, even in my youth run a marathon. I have run the "Bay to Breakers" in SF twice. Ok, I walked. Bay to Breakers is to marathons as the kiddy pool is to the high diving board.
The point, she decided to adapt, she would walk the last mile of the Boston marathon, or be pushed in wheel chair. She may not have come in first. But, to my mind she won the Boston Marathon.
We may or may not be our old self again. I have decided to be happy and content with what we have left, not what we have lost.
Ok, sometime I am pissed off.....sigh.. so, I adapt!
Keep smiling, accept if you must, adapt if you can.
I have grown in a very short time to love you all. Something about shared pain I guess.
Dee
Even though I have terrible days. Since I am not in crisis, I call this a GOOD DAY!.
At first I was angry that my body seemed to have turned on me. I soon realized I had two choices. Accept or Adapt. Since I have the title, I decided to Adapt!.
I have a walker that you can sit on from when I had my knees replaced, so, the first adaption. Go to the mall with my adapted apparatus. Now, my husband calls it my shopping cart. But, it is the dreaded old lady walker. yuk!! however, the choice stay home or go shopping. Ha, well, since my old title was "Shopping Queen". Watch out for the crazed old lady in the mall. (For Seattle writer, that would be Northgate Mall) Sometime when the MG is not behaving, my husband with have to go get the car and meet me at the opposite end of mall from where I started.
I am known for my cooking. For about a minute, I gave it up. Well, I found this, just the right height stool at IKEA.. I drag it all over the kitchen, doing my thing. Adapting! No more dinner parties, but, my husband won't starve.
We went to Hawaii in January, visiting friends. While my husband went out into the ocean swimming with our friends. I adapted! While sitting in a shallow tide pool area watching kids play in the water, a big sea turtle swam up, looked at me and turned around and swam off. I might have missed this experience in the deep ocean. Some time adaption has rewards.
Elenora is my heroine! She adapts! I have never wanted to nor could I ever, even in my youth run a marathon. I have run the "Bay to Breakers" in SF twice. Ok, I walked. Bay to Breakers is to marathons as the kiddy pool is to the high diving board.
The point, she decided to adapt, she would walk the last mile of the Boston marathon, or be pushed in wheel chair. She may not have come in first. But, to my mind she won the Boston Marathon.
We may or may not be our old self again. I have decided to be happy and content with what we have left, not what we have lost.
Ok, sometime I am pissed off.....sigh.. so, I adapt!
Keep smiling, accept if you must, adapt if you can.
I have grown in a very short time to love you all. Something about shared pain I guess.
Dee
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Ann
These are all things I have suggested to others along the road and it has been heartbreaking when appearance over function keeps some from accepting and adapting. I have a daughter who chose a wheelchair as a teen so she could get to the library and her beloved books rather then be stuck at home. I have a mother who for too long resisted using even a cane and stayed shut in but has finally a walker and a cane and is enjoying much more. To me not using adaptive aids is a sort of denial of the disease itself and a surrendering or head in the sand attitude. True acceptance of what is happening and choosing adaption to it is an eyes wide open take control of your life attitude and is the stuff heroes are made of! You Dee are a hero too and a great example to us all.
I love the turtle story....Nature is precious and the gifts are there for the taking. You will find me this spring in the garden, oxygen bottle and all, clipping flowers and sitting in a lounge chair with feet up on a stool watching the big birds overhead and the butterflies float by!
Hugs, Marie
Love you guys!
hugs, Larissa ;)
Thanks for sharing..acceptance for us does not always come easy.
Thanks again..Cj