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RSD Intro's : Hi every1 New Here
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 Message 1 of 7 in Discussion 
From: MSN NicknameKasperimubu75  (Original Message)Sent: 11/30/2006 6:12 AM
Hello Every1, As you can see I'm new here. I'll tell you a little about myself. I am Ken I'm 31 and I'm from Philadelphia, Pa.. I am married to the best woman ever. She takes good care of me. She is always here for me she pushes me when I want to give up because of the pain, she take care of our daughter who is 8 and is a very big help. I have RSD in most of my legs leaving me in a wheelchair most of the time because of the pain is unbarible when I walk. I have had my RSD for 8 years now it started in my left knee, I was lucky I have 5 good years of remission. But one day it was sore so I went to bed woke up in the moring went to get out of bed only to be in so much pain I fell. The RSD took most of my left leg leaving me to use cruches to get around. I was in PT tring to be able to get movement back in my left leg when I was at the end of PT the monster invaded my right leg and again took most of my right leg. My Drs. and I have tried so many things to get it to settle down and it was settled down to were I could walk normal as long as I didn't go overboard but last month ended that now it is off the scale and I'm in my wheelchair to go anywhere. I do walk around the house but with a cane and lots of tears. As that was not enought Friday after thanksgiving (black friday) it started in my neck on the right side. I have been in much pain and depression is sitting in. I'm stuck in the house if my wife isn't around and most of the time in bed because of great pain and with lack of balance afraid of falling and getting worse.I hope to make good friends.
Ken


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The number of members that recommended this message. 0 recommendations  Message 2 of 7 in Discussion 
Sent: 11/30/2006 1:11 PM
This message has been deleted by the author.

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 Message 3 of 7 in Discussion 
From: SummerloveSent: 12/1/2006 6:39 PM
Ken,
I hear you about the wheelchair. It hurts me so badly when my feet touch anything that I spend most of my time in bed. I walk in the house with my canes, still trying to master levitation! I have RSD in my entire right side for the last 7 years and in the last 6 months it has been going into my left side. Lately, my eyes have been affected and quite rapidly I am losing my sight. I have a few hours a day where I can see fairly good if there is enough light. My husband is going nuts trying to provide enough light for me to see. My sons are having difficulty learning that ma can't see the shoes they leave laying in the walkways anymore and she trips on them and falls. But they'll come around, they're pretty helpful! I find that a good sense of humor is essential to coping. My dad, who had brain cancer always said if you could laugh at a problem you could get through it. He came out of brain surgery and rubbed his shaved head and said, "Put water on it and call me a ChiaPet!". How I loved that man! So when my days get hard and my depression rages I remember to put water on it! I soak in warm water awith Lavender and Eucalyptus oil, or Rosemary and mint. Seems the combination of those relieves the stinging and burning and deintensifies the pain somewhat. If anything it is relaxing.
Take care, I'll keep you in my prayers.
Summer

Reply
 Message 4 of 7 in Discussion 
From: MSN NicknameKasperimubu75Sent: 12/2/2006 3:07 AM
Summer, This is Ken's wife he doesn't know that I am on here but I am looking for support to. I am trying to deal with this and it has been taking a major ware on me. Umm I guess you can say that I suffer a bunch of depression because I watch him as well as help him a lot.  The RSD started not long after I had our daughter. I am not sure how to cope with the mood changes so much and I don't know what I can do to help him get comfortable. Do you have any ideas that I could use to help him? I am sorry to hear that you have it in your eyes and everyting! Can I ask you what helps you with the RSD?  I am up for any suggestions at this point. Lisa

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 Message 5 of 7 in Discussion 
From: MSN Nicknameannie57011Sent: 12/3/2006 6:53 PM

 {{{{{{{{{ Lisa }}}}}} {{{{{{{{{ Ken }}}}}} I am so sorry that I am late getting around to this. I am so sorry that we have to deal with all of this. It is a hard one for sure!!! Holidays makes it all harder to!!!!!!  lisa,, the one thing I can say is what ever works,, go with it!!!!! It is a hard one,, what works for one will not work for long!!!! We are all going thru the desensitzing!!! I hate it when I cannot taste my food. It  will burn my mouth like i are a few more jalenepo peppers than should have!!!!!One suggetion that I may have,,  separate the things that you should not be doing,, n delegate with the kids what they can do,,, each one a different thing too always look out for to help you .. Make anote on the wall somewhere too remind them till they get used to doing it!!!!!!!  Another thing that may help,,,,,  Put some strong Vitamin E oil in water to help with healing n pain. I still use it with all the others..   very goo for pain n healing. my skin gets soo dry,, n rashes,, skin starts to peeling off,,, it helps stop that!!!!!!  So here too you!!! Happy Holidays!!!!!


Reply
 Message 6 of 7 in Discussion 
From: flobeveSent: 12/30/2006 4:16 PM



>From: "RSD Helpline Support Group" <[email protected]>
>Reply-To: "RSD Helpline Support Group"
><[email protected]>
>To: "RSD Helpline Support Group" <[email protected]>
>Subject: Re: Hi every1 New Here
>Date: Sun, 3 Dec 2006 10:53:24 -0800
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> Recommend
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> annie57011
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>  {{{{{{{{{ Lisa }}}}}} {{{{{{{{{ Ken }}}}}} I am so sorry
>that I am late getting around to this. I am so sorry that we have to deal
>with all of this. It is a hard one for sure!!! Holidays makes it all harder
>to!!!!!!  lisa,, the one thing I can say is what ever works,, go with
>it!!!!! It is a hard one,, what works for one will not work for long!!!! We
>are all going thru the desensitzing!!! I hate it when I cannot taste my
>food. It  will burn my mouth like i are a few more jalenepo peppers than
>should have!!!!!One suggetion that I may have,,  separate the things that
>you should not be doing,, n delegate with the kids what they can do,,, each
>one a different thing too always look out for to help you .. Make anote on
>the wall somewhere too remind them till they get used to doing it!!!!!!! 
>Another thing that may help,,,,,  Put some strong Vitamin E oil in water to
>help with healing n pain. I still use it with all the others..   very goo
>for pain n healing. my skin gets soo dry,, n rashes,, skin starts to
>peeling off,,, it helps stop that!!!!!!  So here too you!!! Happy
>Holidays!!!!!
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Reply
 Message 7 of 7 in Discussion 
From: flobeveSent: 1/1/2007 5:41 PM



>From: "flobeve" <[email protected]>
>Reply-To: "RSD Helpline Support Group"
><[email protected]>
>To: [email protected]
>Subject: Re: New Here=answering Annie ,, sunflower oil 4 cooking is loaded
>with VIT E
>Date: Sat, 30 Dec 2006 08:16:32 -0800
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> New Here=answering Annie ,, sunflower oil 4 cooking is loaded with
>VIT E
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> From:
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> >From: "RSD Helpline Support Group"
><[email protected]>
> >Reply-To: "RSD Helpline Support Group"
> ><[email protected]>
> >To: "RSD Helpline Support Group" <[email protected]>
> >Subject: Re: Hi every1 New Here
> >Date: Sun, 3 Dec 2006 10:53:24 -0800
> >
> >
> >
> >
> >
> >
> >
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> > New Message on RSD Helpline Support Group
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> > Hi every1 New Here
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> >  
> > Recommend
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> > Message 5 in Discussion
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> >
> > From:
> > annie57011
> >
> >
> >
> >
> >  {{{{{{{{{ Lisa }}}}}} {{{{{{{{{ Ken }}}}}} I am so sorry
> >that I am late getting around to this. I am so sorry that we have to deal
> >with all of this. It is a hard one for sure!!! Holidays makes it all
>harder
> >to!!!!!!  lisa,, the one thing I can say is what ever works,, go with
> >it!!!!! It is a hard one,, what works for one will not work for long!!!!
>We
> >are all going thru the desensitzing!!! I hate it when I cannot taste my
> >food. It  will burn my mouth like i are a few more jalenepo peppers than
> >should have!!!!!One suggetion that I may have,,  separate the things that
> >you should not be doing,, n delegate with the kids what they can do,,,
>each
> >one a different thing too always look out for to help you .. Make anote
>on
> >the wall somewhere too remind them till they get used to doing it!!!!!!! 
> >Another thing that may help,,,,,  Put some strong Vitamin E oil in water
>to
> >help with healing n pain. I still use it with all the others..   very goo
> >for pain n healing. my skin gets soo dry,, n rashes,, skin starts to
> >peeling off,,, it helps stop that!!!!!!  So here too you!!! Happy
> >Holidays!!!!!
> >
> >
> >
> >
> > View Attachment(s)
> >
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> >Also on MSN:
> >Start Chatting | Listen to Music | House & Home | Try Online
>Dating | Daily
> >Horoscopes
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>_________________________________________________________________
>The MSN Entertainment Guide to Golden Globes is here. Get all the scoop.
>http://tv.msn.com/tv/globes2007/
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