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#1
Jun 16, 2009, 11:34 PM
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I may be venting but I'm not saying anything that I would regret later
 ! I have extremely high functioning T.B.I.(Tramatic Brain Injury) I have one of those "spinal cord injuries" that doctors havn't seen before!gggggggrrrrrrrrrrrrrrrrrrrrSo no help there!I have fibro along with"Central Nerve Damge" meaning EVERY nerve coming out of my spianl cord is severly damaged. Then on top of that depending what &%$# doctor I go to one says no to "MS" another one says I definitly have MS. I was the "poster adult" for the face of MS when I lived in the south. Up in Upstate they don't treat me. I think that I have too many "problems." Now I'm battleing a brain tumor and there is a bunch of pain with that! Then I feel all my other Extreme Chronic Pain and constantly it seems like I"m staying in my 'imagery" or "visualizations." According to my DID I am majorly dissociating. But thanks to this particular forum and others as well that are all here. But what is the hardest part for me to swallow, as I sit here in my wheelchair, constantly having skin breakdowns despite the fact I check constantly at least 4X a day. But what is even more _________ (can't find a word to describe my anger) is ALL the above, even cancer and who knows about the MS, IS all of it would be unnecessary if I would not have been ABUSED DAILY for I stil don't know why and it's over 30 yrs. So when I hurt so bad and I ache and I hurt all over, my mind just wants Freedom! ThaCrew Thank-you for reading 
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#2
Jun 17, 2009, 05:02 PM
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((((((((ThaCrew)))))))))))))))))
 I'm sorry...
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 Crew
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#3
Jun 17, 2009, 05:08 PM
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Pain is such a limiting factor in our lives, it seems. I feel sorry that you can't just 'get on with life' and move past it, because pain is not something you can do that with. I guess you just have to peservere (SP?), keep asking for help, keep busy, surround yourself in things you can do. I know it's so hard though, and there is no easy answers.
I hope you feel more positive soon, and you never know, there are many improvements in medicine all the time so something may come up. Take care hun xxx |
| Crew
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#4
Jun 18, 2009, 04:29 PM
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It's not a good spot you are in right now...thinking and all. I hope you can manage to get to a better place soon. With regards to MS or not MS... why not ask the doctors to try some of the meds for MS with you? Many of them are used off label for pain and the same neuro issues, I know personally of this. (I don't have MULTIPLE lesions, just one due to the accident.) The MS society took me under their wings anyway... and I would hope that you join the local support group. They are not only emotional support, but encourage you with a wealth of information to help educate the doctors. Your lack of treatment can be, unfortunately, common place.  I hope you don't stay angry for long... or at least to where it is detrimental to you (and that includes holding it in when it can harm you.) I've found little benefit in anger, but I had to move to that place and it was a very arduous and slow journey. Anger isn't in my best interest and I think it isn't in yours either. While we aren't at fault or blame for our pasts, we are responsible for our presents, with hope of planning for our futures. Find higher ground if you can, and spot out where you want to be.
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#5
Jun 18, 2009, 04:58 PM
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ThaCrew, I know several I've seen people with it go from walking to wheelchair in a single day.al people with MS. A terrible disease.
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#6
Jun 22, 2009, 03:09 PM
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Hope things are going better now for you!
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I'm here to deal with my "issues". 
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#7
Jun 26, 2009, 07:20 PM
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I hope things get better for you. I wish that doctors would get it together too. It is frustrating when more then one thing goes wrong, and it really seems to be a headache. My heart goes out to you it is frustrating and I am here for you.
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| Crew
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#8
Jun 26, 2009, 08:11 PM
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((((Crew)))))
Your post made me cry....You are so awesome! Crew, my daughter has bladder disease (since she was 13). She has had to learn how to cath herself and lives in constant pain...We have dealt with so many as*hole doctors!! Crew...I don't have a solution or any words of wisdom for you...but my child is 25 now and a mother herself.... I work at a hospital....she is treated like a drug seeker most of the time....Just know that you are not alone....I wish I could do/say something to make your struggle better, but I do send you HUGE and so much admiration and respect for all that you do for the people on this board. You have made a difference in my life!! 
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[SIGPIC[/SIGPIC] Susan
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| Crew
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