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munchkin
09-14-2005, 03:07 PM
hi im new to this 'forum' stuff so please be nice! thanks! um when i was 9 yrs old i found out i had "something" wrong. my parents said i was ok, the doc was stupid, they never heard of any such thing. if/when i had pain it was 'growing' suck it up dont be such a baby. by time i was 12 my sis (3 1/2yrs old then) would rub 1 - 2 tubes of bengay on my back for me pr week. by this time my mom divorced my (sis/bro) dad & we lived with (their) grandparents. (she got me the bengay) when i was 14 my mom 'WANTED' me again (at 14 i had only lived w/ her maybe 5 yrs out of my life) so i moved to GA w/her. my Ray "real dad" took me to get on his army ins. then took me to base dr. i was there 2 wks. @ 1 wk later he phoned to tell my mom my surgary info.
she told him NO (custody was to her) we would go to church-lay hands- pray & god would "FIX" it. well at 15 ?? from fla layed hands on at church. FF to today... i turned 33 in july. last wed. mom called (she now has been working 4 DFCS for @10 yrs.) my g-mother told her she had 2 help me/SSI so she was ...ill as usual....i asked her if she ever searched & read @ on net anything- NO she said. we got in to & she told me "it is my fault, because 'GOD HAD HEALED ME' & i "LET" go of it."
i am so - - - somethig--- mad, hurt,socked---something. i told her she sentenced me to so horrid chineese torture death sentence.
i am working on SSI because i can no longer handle this, i feel there are others need more than me so i am trying to find another way, but cant get ins. ... the horrid things that my body.... i try not 2 complain, i've lied all these yrs (only 2 self just found out) @ b/c i am so much more than SHAMED... any way (sorry) i thought i would feel better to know there are others that feel/have same things wrong... to not be so alone....but it made me feel almost worse, i HATE to see someone hurt, but to KNOW EXCATLY how you feel.... i just want to have some magic wand and 'poof' make you all better...i would not mind being 'shamed' to keep another from this pain... is it ok to feel this...sad/compassion/guilt??
thanks for reading this, i am now up to telling 2 people how bad it is! (not family- my best friend-yesterday & u today!) thanks

javaboy
09-14-2005, 08:45 PM
Hi Munchkin,
I understand where you're coming from completely. I have a congenital fusion from T9-T11, which leaves me with a big kyphosis (hunchback) and a small scoliosis.
My defect was noticed on x-rays at 7, when I was in hospital for pneumonia, and they were x-raying my lungs. The doctors wanted to investigate it fully, but my mum refused to have them do any more x-rays, as I was young, and they'd been bombarding me with radiation already. We never followed it up at a later date.
When I started putting in my growth spurts as a teenager, and my hunchback started rearing its ugly head, I was simply told that my posture was lousy and that I should stand up straight.
The pain and the headaches were blamed on first sinus headaches and then migraines. No one ever seemed to notice that I didn't have the strength in my body to stand upright and unsupported for more than five minutes.
Everything finally came out in the wash when my fiancee talked me into having it all checked out at 27.
It annoys and frustrates me that others had the power to do something about it for me when I was young, but didn't. It's left me with a body I have had to rebuild of my own accord (thankfully no surgery, yet - just a whole bag of physical therapy and physio appointments). But to think of the days I've lost to the pain... :mad:
I guess the answer is to play with the hand we are dealt, and to accept what we've wound up as, but I have to admit that it is a very hard point to get to, and you definately need a few supportive people around you to do so!
Just know that not only is it OK to feel sad, guilty, remorseful etc... it is completely normal. I still have a bad habit of lying about my physical state on the bad days, simply because I don't want to have to watch my loved ones suffer through a day of having to put up with me at my pain-racked, moping worst. I guess the best thing to do is talk about it to all, get everything out in the open, and then get as far away as possible from those who don't accept you as you come! :rolleyes:

Ta,
Martin Hughes

munchkin
09-15-2005, 04:47 PM
thank you so so much! i just dont understand why a parent would (as i see it) be so cruel? thank you for the wonderful words of encouragement! i cried, it was a nuch needed 'thank god' kind of cry! what a wonderful mate you have to 'stand up' for you when you did not even realize you were unable too! i read all these thing people write and it all sounds so famillar and i dont know why it makes me so (i think) sad feeling? not 'sorry for' in an ugly way but this wave of such compassion/love. my grandfather has polio so i never 'learned/was taught' to see "handicapt" people as any thing but JUST PEOPLE. so i know my feeling is just what what it is. thank again!! i only hope you know how much your note ment/means to me!

thank you friend~
munchkin

javaboy
09-15-2005, 10:55 PM
Hi Munchkin,


i just dont understand why a parent would (as i see it) be so cruel?
I guess sometimes we just get so caught up in our own needs that we neglect those around us, parents included. That has certainly been the case with mine, and I have certainly been guilty of that myself in the past too. Definately a lesson learnt, that one!


what a wonderful mate you have to 'stand up' for you when you did not even realize you were unable too!
You bet! I'm now very happily married to her! :D
I am lucky in that she is an occupational therapist, works with aged people who endure similar problems, and put two and two together when she saw the hump in my back coupled with my pain. I always just thought that I got tired easily or something, having to find something to lean on or sit down in all the time.


i read all these thing people write and it all sounds so famillar and i dont know why it makes me so (i think) sad feeling? not 'sorry for' in an ugly way but this wave of such compassion/love. my grandfather has polio so i never 'learned/was taught' to see "handicapt" people as any thing but JUST PEOPLE. so i know my feeling is just what what it is.
I find that it is important to help other people now that I have gone through what I have - it gives your experiences meaning and purpose. And to run into others that are going through what you have already I think kind of makes you think 'I remember that.... ouch... that poor person...'. I still definately desire wanting to be treated like an ordinary person and wanting to find ways of being able to live as normally as anyone else, and I find most other people on here are much the same, no matter what state their backs are in. It definately resonates with me when someone else says 'I wish everything would just go away and I could be normal'!


thank again!! i only hope you know how much your note ment/means to me!
:o Just glad that I could be of help!

Ta,
Martin Hughes