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Re: families and tsc

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Pamhplet for families! I LOVE THAT IDEA!!!!!!!!!! Amy

>

> Re: to surgery or not to surgery, that is the

question?

>

>

> > Jenn

> <snip>

> > I also wanted to suggest you have your parents join

> > this group and if they do not have internet access

> > maybe you could print some of these postings.

>

> Jenn

>

> If you could handle having your parents join, or maybe have them

get the

> daily digest....I think this would be an excellent opportunity to

educate

> them. It wouldn't be just you saying or experiencing these

things...there

> is 100 of us!

>

> To be honest, I don't think I'd want my parent on the list...too

much

> information is not good for her (lost my dad last month.) My

mother, and

> especially my sister was the same way as your parents. She just

couldn't

> fathom having surgery, getting worse, needing more surgery and

having that

> be the norm. She was continually after me to find another doctor,

sue, etc.

> It was exhaustive to talk to her (I stopped talking with her about

four

> months ago and I've got to tell ya...my energy spiked about 10%

within a

> week.) I was constantly comforting her...it was a total reversal

of what it

> should have been. I was the one that had to " deal " with her issues

over my

> decline..not the other way around.

>

> With my mother it's total guilt. She feels guilty over never

telling the

> pediatrician we had in Mass. about what the pediatrician in Oregon

said

> after I was born (the " tell-tale " sign of an open hole after birth.)

>

> I had constant bladder/kidney infections, painful legs, etc while

growing

> up, feet problems as a child, and she never put two and two

together and

> told our new pediatrician about my open hole at birth...or maybe

she didn't

> want to face what it meant...that's my suspicion because of little

hints she

> says during our conversations.

>

> She cries all the time about this stuff, and to be honest...it's

getting

> old. I don't cry over it and I don't want to sound

unsympathetic...but

> after almost five years of this, she should be accepting it by

now...I am.

> I know that sounds really cold, but to try to talk to someone,

especially

> over the phone, and have her cry every time or be told that the

minute we

> hang up she cries, it gets to be too much. I don't tell my family

anything

> anymore...which makes it hard on me.

>

> Anyway...it's very difficult having a family support network that

doesn't

> help and sometimes makes things worse. I think a lot of us deal

with this

> issue. Maybe we should come up with some kind of pamphlet for our

> families????

>

> Kathy

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