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Senior Member
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Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Senior Member
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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HEy Whirlwind!
Sadly, you are so right! Most of my family STILL doesn't get it! A few of them call this my "lazy bone" disease and tell me I'm being dramatic - these are the same people that SAW me pushing my jaw up and down in order to EAT, yet they make me sound crazy/lazy.
My sis and I used to be so close, but now we hardly speak. Ever since my dx, she has shut me out. I used to watch my niece EVERY day, now I hardly get to see her - when I ask my sis about it, she tells me that if I want to see Lilli I have to drive over! AUGH!
When I saw my grandparents a few weeks ago, my grandma said she needed some "younger" friends cuz' I was sleeping a lot - and then proceeded to tell me "Try being 81" I told her "Try having MG for 1 day"......I love them so much but they just don't WANT to get it!
I think that everyone (myslef included) expected me to be my "old self" right after my thymectomy - hell, I was entertaining people 9 days after it!
People who do not have our disease do not get it! I was always very type A and did lots of stuff, now there days when getting off the sofa is too much for me, but it will get better!
Just keep the positive people around you and ignore the others. It isn't worth the time or energy. You do not have to explain yourself to anyone! I still fight that urge every day! 
It isn't fair or right, but we have to do what we have to in order to stay happy and healthy. If you are tired, rest. No explainations needed. It has been really had on my son and hubby b/c I would always pamper them, but they need to get used to it. The sooner I'm up and about, the sooner I can take care of them again.
True, we do not have something awful like cancer, but we do have a terrible autoimmune disease that can wipe us out in a matter of minutes - for now, there isn;t much we can do about it, except make sure we take our meds and rest when needed!
You do have US! We understand!
Big, big hugs!
Erin
Quote:
Originally Posted by whirlwind123
 I was talking to some friends from pittsburgh, and told them about the MG, first one said: Oh., that is such a manageable disease and with the mestonin you will feel wonderful, you don't really have any worries 
The next one said: Oh I bet you are on cloud 9 with the mestonin., the disease now is really nothing to worry about., and since you have mestonin you will feel like you did before you got the disease.
Am I missing something., I tried to explain , well you still can be on medicine and have problems., sometimes with mestonin other medicine is necessary., you can still have bad days., you can still have a crisis., they kind of poo pooed me and changed the subject.
I guess some people don't really understand. |
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Erin
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