He he he, Erin you only see a certain part of my, believe me I can be a miserable so and so sometimes.

I guess everyone was use to me being so independant, living on my own(I was 30 when diagnosed) I did everything for myself, I use to service my car even, ride horses, work full days in stinking heat etc etc, to a blithering mess who couldn't even take 2 steps on her own. I think I just have a really caring loving family, and I reall truly appreciate every one of them!!

Hey there! You are always so positive that I simply cannot imagine you any other way!

I know you have always been so kind to me - even when I whine and moan, so I know you have a heart of gold!

It is so hard trying to get used to not being as mobile, but we do what we have to ,right?

I just do not want to end up a bitter shell of my former self.....you know those people that are just miserable all the time? I refuse to be one of those!

You do have a great family! I hope and pray mine grows up real soon! I have always put family first and love them with all of my heart, but they irritate the crap out of me!!!!

Take care and have a GREAT trip!!!!!
Erin

I know I don't have the same condition but I could have written the rest...I lock normal on outside except for the curve in my back that my son now calls me Mrs C and it hurts my feelings! I could maybe live for another 40 years but my condition is progressive and I will no doubt end up in a WC and I can't lift over 15 lbs, can't even open a bottle of pop.

A few months ago with my dead bowel I really thought I had colon cancer and finally my family started paying attention to me for first time in years and I had the colonoscopy and it was ruled out and confirmed it was just part of my condition and suddenly back to no one cares so I was actually sad I did not have colon cancer, how sick is that?


My Dr said to buy a book called " But you don't look Sick". I too was family caregiver and now that I am useless have been kicked to the curb. I don't know who I am anymore, just that I am now an orphan!

Sorry for butting in!

Hey there! I'm so sorry you are having to go through this......It just frustrates the heck out of me.....

People can be so thoughtless sometimes.....especially when they have always counted on you to take care of them........

Hang in there and I'd love to hear from you soon!!!!


ERin
'd

You cerainly have reason to feel sad and it must hurt when your family don't show their care and understanding!!!!!!!!!!!!!!
with so many health problems as any one alone would be differcult to cope with hope your able to keep smiling at some time
As long as i know i'm doing my best i don't realy care about other peoples lack of understanding .................
good luck Alan

Thanks all,
I guess what I want most in the world is a real flesh and blood friend that I could hang out with, laugh with, and most of all trust and be believed! Everytime in past few years I thought I found one they turned out only wanting my pain meds It is very hard for me to trust anyone these days!

Hi Erin,

I think we all have had to deal w/ that issue, but to different degrees. I would strongly suggest that you give them some unbiased, written info. I found the info on the MGFA website-a note to caregivers (or titled something likethat?) is helpful. I think because often people don't SEE the MG illness, it is hard for them to grasp.

Hang in there & take care of you. Give your loved ones some time, and encourage them to educate themselves. Remember that it is not you, and that it is a process for everyone, your family & friends too! Keep the faith!

Nancy Lee