Re: feeling extreme guilt and frustration

[Guest guest]

I wish I knew how to respond. I'm not really depressed about it. I do feel

extreme guilt because my husband has had to take on a lot more household

responsibility. I also have a couple co-worker's that

help on the job. If not for them I couldn't do some of my duties. I am thankful

to have them in my life but I do feel frustration.

[Guest guest]

I feel quilty to knowing our 26 yr old son might have CMT. He was tested years

ago with the needles, but don't know the name of the test. Both doctors said he

did not have it, but now his hands and legs look just like my fathers and

grandfathers did.

Our son called me last night and he said he didn't want any kids if he ever

found out he did have CMT. I got the paper work in the mail from Athena today.

I'm going to try and go thru the MDA clinic like we did years ago.

Since our son lives in Austin, its hard for me to go with him to find a good

doctor there. So we're going to take it one step at a time. I'm so glad to find

this group because every body has been so helpful.

Rosie

[Guest guest]

Don't feel guilty about anything. When you and your husband exchanged vows,

it was " in sickness and in health; for better, for worse " . I'm sure if the

situation was reversed, you'd be making additional sacrifices for him. As

far as work goes, if your co-workers were not willing to help you, you

wouldn't be able to perform your duties, and therefore possibly qualify for

disability. They'd rather have you in a lesser capacity then not have you at

all. I'm sure you're thankful for the people in your life who are willing to

help you. They do it because they love you and truly want to help. Perhaps

you can find, or have already found ways that you can help them in other

ways. Getting over the frustration will come with a more profound acceptance

of your illness. I know I experienced it too in the past and it does get

easier to deal with.

[Guest guest]

Rosie,

I hope you won't burden yourself with guilt about your son's CMT. My

mother, who died 5 years ago at age 85, never once expressed sorrow about my

problems with CMT. She had the gift of seeing each of us kids, seven of us,

as unique people. She always looked at our strengths and insisted that we

recognize the many, many blessings of our lives. Of course I had my own

struggles, but when I made the same decision as your son to not have

children, my mom said, " Oh that's too bad--of all my boys, you would have

been the best father. " Her comment has stuck with me all these years. Now,

at age 59, I realize my mother's wisdom--recognizing our gifts. I never did

have kids and am still OK with my decision. I always knew, to my very core,

that my mother loved me. That and the love and support of all my family,

has sustained me through bad times, but the good times (and there have been

many, many good times) in my life have far outweighed the bad.

Tom