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General : Share Your Stories Please
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 Message 1 of 10 in Discussion 
From: MSN Nicknamerat_lover64  (Original Message)Sent: 1/8/2008 3:41 AM
I have a project in one of my classes to create a movement...and so my movement is going to be to raise awareness, and provide support for people with Reflex Sympathetic Dystrophy. We must say how we are going to educate people, who it will help, and how we will fund it. We have to make a presentation and make a pamphlet. Being someone with RSD...I know that we need people to realize what we go through...so that we can get the help and support we need. Anyways I was thinking that I would make part of my pamphlet include personal stories...you know to help open people's eyes that it is everyday people who are dealing with this. I plan on sharing my story, which is a big step for me because I often avoid telling my classmates. But I was hoping to have a few other real personal stories. If any one on here is willing to share a condensed version of their story...it would be greatly appreciated. You can choose to remain anonymous...or you can give me your name and age.


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 Message 2 of 10 in Discussion 
From: MSN NicknamefranknberrieSent: 1/8/2008 1:28 PM
Hi Rat Lover64,
I wanted to let you know that you can get some free fact brocures from the Nation Instute of Neurological disorders, they will send you as many as 10 at a time. here is the internet URL to get some.
https://ice.iqsolutions.com/ninds/orderpubs_single.asp?PubID=443
Just copy and paste the above internet address into your brouser and this link will take you there.I keep a good supply of these at home and in my car for interested people.
Good Luck and if you would like my story its quite indepth how it took 2 1/2 years to get diagnosed and another year before they finally found the right combination of drugs and blocks to keep my pain level at bay.
Franklin

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 Message 3 of 10 in Discussion 
From: MSN NicknamefranknberrieSent: 1/8/2008 1:31 PM
Oh Yea, good luck with your project and great thinking, just ask if you would like my story sent to you.
Franklin

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 Message 4 of 10 in Discussion 
From: MSN Nicknameannie57011Sent: 1/8/2008 5:44 PM

Hi there,,,,, My story is not as as graphic... Thankfully,, Was in rite place with the rite drs... But with the moving n changing went thru some crazzy times... Make sure that the drs n people make out that we are mental patients from outer space....  They have no idea what or how we are suffering or feeling with all that is going on...  What the rsd does to our bodies is another story... Besides all the meds.... Rat There are alot of articles  out there  on rsd and what we are going thru... I am thankful that I have not had the troubles that others have had with treatment...  Very thankful..... Feeling really deeply for those who have had the kind of troubles that they have had!!!!! Huggzz dear!!!!   Annie


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 Message 5 of 10 in Discussion 
From: MSN Nicknamerat_lover64Sent: 1/11/2008 12:44 AM
If you are willing to share your story...I would love it. I of course might condense it some once I get it so that it fits...but thats okay. I also want to respond to something you said awhile back...I believe it was you. You said that I had really helped your daughter understand what you go through...and helped her to understand RSD better, just by talking to her. I want to say thankyou for letting me talk to her. Its nice to have people to talk to that are around my age. Even though she couldn't necessarily relate directly to what I go through...she always seemed so kind and when I was having a bad day and she came on...I have to say she helped me feel better. So thankyou...and your welcome. I really dont feel like I did anything...but apparently just by being me I was able to help. Please tell her to keep in touch...I haven't heard from her in some time.

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 Message 6 of 10 in Discussion 
From: MSN NicknamefranknberrieSent: 1/11/2008 1:46 PM
Hi,
I will tell Morgan to get in touch with you, she has been very busy lately ans has had some other significant things going on in her life.
I will write my story and try to condense it as much as possible, I have had RSD in both of my arms for almost 8 years now and I believe it has pretty much stabalized in the last year. I will write the story this weekend and send it to your posted email address, Morgan is a big part of my story as her mother left me because of RSD,she said it (I) was controling her life too much! Morgan lives with me...she didnt want her daddy alone and sick and it has stressed her and her mothers relationship a lot. Well, watch you email box...OH yea, I hope you went to NINDS and had them send you some of their pamplets.
Franknberrie

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 Message 7 of 10 in Discussion 
From: MSN NicknamefranknberrieSent: 1/11/2008 4:31 PM
Hi Rat lover,
Today I emaild you my complete story of how I became affected with RSD and how I was treated. Watch your email from Franknberrie, It may come into your junk box so look for the name franknberrie, if you do not recieve it let me know and I will resend it to the email address you give me.
Good luck with your endevor
Franknberrie(Frank)

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 Message 8 of 10 in Discussion 
From: MSN NicknameSylviaMarieZSent: 1/22/2008 5:26 PM
Hi there,  I'd be happy to share my story, which has a good, positive ending for those with RSD.  Would you like it?
 
Sylvia

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 Message 9 of 10 in Discussion 
From: MSN NicknameTami62Sent: 2/7/2008 2:57 AM
You all ROCK...good goin you guys, keep up the good work and even though I'm new to this I want to help some how and mabye you all could help me too.....I'm a virgin.....not that way you guys...geeeeeezzzzzz, get your minds outta the gutter and back to RSD.lol....even though we don't want to think about it, it is real and you all are right we need to make all we can aware of this stuff and let them know it hurts and we are not just whining.....keep it up all and mabye someone will listen....love ya all poppascoti. Tami's other half

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 Message 10 of 10 in Discussion 
From: MSN Nicknamekieferskitten1Sent: 4/24/2008 3:58 PM
If you'd like my story let me know and I'll get it to ya this weekend.  It's gotten alot longer as time has drawn on.
Michelle

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