venting/scared feeling helpless SIGH

[Guest guest]

Hi, I guess as s surgery gets closer I get more scared ! I watch

and listen to you all out there and it seems like your symptoms get

worse slowly???

My son is not progressing slowly and it scares me. This weekend at his

grandmothers he kept insisting that people were locking him out of

everywhere

<she keeps all her doors shut regular doorknobs ect in the winter to

preserve heat >

He even showed his " Nana " that it was locked by trying to open it with 2

hands!

needless to say the doors were not locked ! I had noticed he had been

" tired " and things were too heavy in December but he could open doors

then!

He is still experiancing sleep apnea and was hearing things wrong The

ENT sent him to get his ears tested His Right ear failed He has fluid in

both ears sooooo

On 02/12/01 He gets his adnoids/tonsils removed Tubes put in his Ears

and the Decompression/C-1/Dura patch ALL AT ONCE

Did you know that to take out the tonsils they have to put your head all

the way back????

I called the NSG today spoke to the nurse about his worsening condition

She said she would tell the NSG that he is exp more weakness in the

extremeties But that there is no medication to help him ...that the only

thing to do would be to move up the surgery < I know that 02/12/01 was

the soonest he had We were the 3rd surgery out for him He operates on

Mondays so that won't work She suggested that if activity seems to

agrevate it to limit his activity.

How ?? I already took him out of recess ?? I have stayed home from work

over half of the time with him all he does is watch TV play alittle with

his Gameboy sometimes he actually plays with his younger sisiter <runs

around after her she is 3>that is when he is feeling better Yes he feels

worse afterward but how can I make him sit if he actually feels better

at that time??

Sorry It is sooo Hard to sit here and try and pretend there is Nothing

wrong when I lay at night listening to him struggling to breathe I get

terrified . I am a single mother I am the one that shows/tells the kids

it will be ok.

I know the surgery may not bring him all the way back but it is also soo

hard to tell him everything will be ok if it won't be !

And I guess the worst thing is I feel so Helpless!

Thanks for listening

Mother to 7yrs old

Linear Scleroderma <diagnosed 06/00>

<ACM I 8-10mm diagnosed 12/16/00 NSG 01/11/01surgery set for 02/12/01>

Also Natiaya 12yrs, Lily 4yrs, and 8mths

[Guest guest]

What can i say but my heart goes out to you. For me personally I noted that

something was not right when my hands had constant pins and needles in April

2000. From that time to December (when i had my decompression) I was

redused to having no energy what so ever for most of the time and the odd

time that i did, i used to try to Work out - had to get rid of th flabby

bits! Like your son, I too felt worse after it. If i went ot at night it

took three days to get over the tiredness. I went from going out 3-4 nights

a week to staying in and falling asleep on the couch. As much as this

helped my bank balance, it was making me very depressed.The day I had my

operation,the strenght in my hands was checked....not very impressive to say

the least....on the positive side, 24 hrs after the op there was an

unbeliveable improvement. and 2 days after that it was better than it had

been in years...Also, it has been 7 weeks since my op and although i have

headaches, it nothing i can't handle while being without drugs. why is the

date for your son's op so far in the future? Can you Nag people to bring it

forward?

AS for playing - is it actually doing him harm? I know he feel worse

but if (and it is a big if as i don't know if it is causing harm) it

doesn't do harm in the long term, let him play a little with his sister.

But as i said, get medical advise on that. Let us know how you get on.

God Bless you both

Jac

Considering

>To: " chiariegroups " <chiariegroups>

>Subject: venting/scared feeling helpless SIGH

>Date: Tue, 23 Jan 2001 20:45:11 -0700

>

>Hi, I guess as s surgery gets closer I get more scared ! I watch

>and listen to you all out there and it seems like your symptoms get

>worse slowly???

>My son is not progressing slowly and it scares me. This weekend at his

>grandmothers he kept insisting that people were locking him out of

>everywhere

><she keeps all her doors shut regular doorknobs ect in the winter to

>preserve heat >

>He even showed his " Nana " that it was locked by trying to open it with 2

>hands!

>needless to say the doors were not locked ! I had noticed he had been

> " tired " and things were too heavy in December but he could open doors

>then!

>He is still experiancing sleep apnea and was hearing things wrong The

>ENT sent him to get his ears tested His Right ear failed He has fluid in

>both ears sooooo

>On 02/12/01 He gets his adnoids/tonsils removed Tubes put in his Ears

>and the Decompression/C-1/Dura patch ALL AT ONCE

>Did you know that to take out the tonsils they have to put your head all

>the way back????

>I called the NSG today spoke to the nurse about his worsening condition

>She said she would tell the NSG that he is exp more weakness in the

>extremeties But that there is no medication to help him ...that the only

>thing to do would be to move up the surgery < I know that 02/12/01 was

>the soonest he had We were the 3rd surgery out for him He operates on

>Mondays so that won't work She suggested that if activity seems to

>agrevate it to limit his activity.

>

>How ?? I already took him out of recess ?? I have stayed home from work

>over half of the time with him all he does is watch TV play alittle with

>his Gameboy sometimes he actually plays with his younger sisiter <runs

>around after her she is 3>that is when he is feeling better Yes he feels

>worse afterward but how can I make him sit if he actually feels better

>at that time??

>

>Sorry It is sooo Hard to sit here and try and pretend there is Nothing

>wrong when I lay at night listening to him struggling to breathe I get

>terrified . I am a single mother I am the one that shows/tells the kids

>it will be ok.

>I know the surgery may not bring him all the way back but it is also soo

>hard to tell him everything will be ok if it won't be !

>And I guess the worst thing is I feel so Helpless!

>

>Thanks for listening

>

>Mother to 7yrs old

>Linear Scleroderma <diagnosed 06/00>

><ACM I 8-10mm diagnosed 12/16/00 NSG 01/11/01surgery set for 02/12/01>

>Also Natiaya 12yrs, Lily 4yrs, and 8mths

>

>

>

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>

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