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Suz1catz
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TDXSP08 posted:
Suz1catz

I know how you feel i have severe chronic pain that is kept down to a dull roar with meds but i have 2 primary disease's one is Congenital Myotonic Dystrophy which is considered rare the other is Hereditary Neuralgic Amyotrophy this is extremely rare it has only occurred a little over 200 times in 36 dutch families in over 130+ years, iI am not dutch,have no dutch lineage whatsoever Dr's call me a sporadic skip some how it "accidentally "got in my DNA,No one on earth has ever had these two diseases so i was told what i hear every doctors visit "there is NO treatment there is NO Cure YOU will DIE FROM THESE or something they cause,YOU will die young,we will try to treat the symptoms and keep you comfortable thats all we can do".

Everything they know to do for Muscular Dystrophy is CONTRAINDICATED by the other disease it will speed up the other disease, I had a life i was a Husband Gone,I was a Paramedic Firefighter Gone, i drove GONE ,i was a Mountain climber and caver GONE, MY WHOLE LIFE GONE,now i'm just 69 pounds of alive in a power wheelchair who DIED LAST MONTH AND THEY RESUSCITATED ME into a week long coma got me well and sent me home FOR WHAT ?? my friends say i have not completed my job on earth yet or God isn't ready for me,but i can't even save my own life let alone help someone else so what am i doing here, Taking up space and i have on top of the million other things wrong with me i have a sleep disorder and have not slept for the entire time of month and a half since i came out of the coma and that will make a person want to plain go crazy so SUZ i am not comparing our lives in any way or our pain or emotional load but i read these boards and i look at the people who aren't even at "Day One" of their personal what i call"magical medical mystery tour" of doctors giving them little nuggets of information until one day they have collected enough and find a Doctor that cares and helps them become us of the future,those are the people that my heart really hurts for because they really have no idea at whats coming,Lets face it we all would like to have had a little bird on our shoulder to tell us you better really enjoy this this is going to be the last time you ever___________ fill it in with anything that you have lost, The last time i remember waking up with someone next to me doesn't have to be a lover or anything just someone who loves you and is glad your alive was Thanksgiving 2006 ,I would give all the tea in china for that again or for a hug.Strange things we lose and miss , there is probably people here who have family and such and take them for granted all my family is dead I have no one but friends and a Dog,and the world is big lonely and not many people stop and think that some people are young i'm 44 and my last family my mom died in Feb of 2007 Ahh well i have written you a novel ,what do you think? how do you feel?

Peace
i have no small step for man, but i have 6 tires for mankind,Watch your Toes!
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77grace responded:
Hello,
I am Sad that you are ready to give up and have lost hope !
I have been really down alos and wanting to give up but our state of mind has a lot to do with how we feel !
Your friends are right ,God has a plan for you and that is Salvation !This world and life are only a tempory place !I hope that you do believe in a life after this !I think you do because you mentioned God !
These are only my feelings and I hope I'm not upsetting you but I really care about what your going through !
I'm here if you need me,77grace


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