RSD Outreach awareness

My Dad.........By Stephanie

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My Dad.........By Stephanie

Post  byrd45 on Wed Nov 12, 2008 10:19 am

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From: stephanie (Original Message) Sent: 11/26/2004 11:04 AM
Hello, my dad was recently diagnosed with RSD...I have found it very hard to believe and deal with...He was never one to let anything bring him down and now he can barely move...I have been searching for doctors and information to help him out but it seems that there is very little help around...I just hope that by talkin about RSD it will get out there and people will realize its no joke...Bless all you who have dealt with this disease and who have learned to deal with it...God Bless!



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From: Jim Sent: 11/27/2004 12:07 AM
Hi Stephanie,
I am so sorry to here that your dad has gotten RSD but it's wonderful that you are trying to be supportive of him as it helps more than you will ever know. I have had RSD in my right ankle since 1999 that has since spread up my leg and into my spine. I am 48 How old is your dad?? Look forward to talking with you or if your dad ever needs to talk to someone we are all here for you both

Jim


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From: byrd45 Sent: 11/27/2004 8:19 PM
Hi Stephanie,
You are right that awareness has a long way to go, but everyday that we all try to spread awareness is a day closer to better health care and early detection for anyone with RSD. I am sure you believing in him and being supportive is so helpful. I know how hopeless it can get at times and I watch my family suffer along with me hoping that tomorrow will bring changes for the better. I think that your dad is so lucky to have your support! I don't know how I would deal with this in my life without the supportive family I am lucky enough to have. Researching on the internet does help to put things in perspective. Some info is good and some is outdated a lot of sites I have seen say that RSD doesn't spread I know personally that is not true. It spreads in some and doesn't in others. They really don't know why that is yet. Check out my links page on the main site http://rsdoutreach.com if you don't see what you are looking for just let me know and I will see what I can find out for you. I have heard a lot of negative comments from uninformed doctors and people. Like oh I heard of that RSD that is a catch all diagnosis when they don't know what is wrong with you. You can imagine how enraged I was. I told her some true facts about RSD plus showing her some of the changes in my arm that is unusual and offered to drop off a brochure so she could be educated in case another patient with RSD should come her way. Needless to say I had the last word and she looked perplexed when I left. She was upset with herself probably because she didn't know what was causing my skin symptoms I was having. They were another symptom of my sympathetic nervous system working overtime. Anyway it is great to have you here and talk to you soon.
Robyn ----- Original Message -----
From: stephanie
To: RSD Outreach
Sent: Friday, November 26, 2004 11:04 AM
Subject: My dad


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From: stephanie
Message 1 in Discussion

Hello, my dad was recently diagnosed with RSD...I have found it very hard to believe and deal with...He was never one to let anything bring him down and now he can barely move...I have been searching for doctors and information to help him out but it seems that there is very little help around...I just hope that by talkin about RSD it will get out there and people will realize its no joke...Bless all you who have dealt with this disease and who have learned to deal with it...God Bless!

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From: brendasue Sent: 2/23/2005 9:49 PM
I TOO AM SO SORRY FOR YOUR DAD. I WISH SOMEONE COULD HELP ME WITH SOME ANSWERS, I WAS TOLD TWO WEEKS AGO I AM A WALKING TIME BOMB FOR RDS..WHAT EXACTUALLY DOES THAT MEAN. LOTS OF PAIN AND JUST SO AFRAID I WON'T BEAT THIS. DOES ANYONE KNOW ANYTHING ABOUT HAND AND WRIST..AGAIN HOPE YOU GET BETTER.


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From: therese521 Sent: 2/23/2005 11:55 PM
brendasue wrote:

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> I TOO AM SO SORRY FOR YOUR DAD. I WISH SOMEONE COULD HELP ME WITH
> SOME ANSWERS, I WAS TOLD TWO WEEKS AGO I AM A WALKING TIME BOMB
> FOR RDS..WHAT EXACTUALLY DOES THAT MEAN. LOTS OF PAIN AND JUST SO
> AFRAID I WON'T BEAT THIS. DOES ANYONE KNOW ANYTHING ABOUT HAND AND
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Hi Brendasue,

My name is Therese and I've had RSD for about 10 years now. It started
in my right foot but at the same time I was having pain in my right hand
and wrist. They did see nerve damage on the EMG of my foot but saw
nothing on the one of wrist. But trust me, it was hurting and since then
I've learned that RSD won't necessarily show up on all tests. So don't
let them tell you that nothing's wrong. Hang in there! Our Prayers are
with you.

Love,
Therese




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From: byrd45 Sent: 2/24/2005 10:34 AM
Hi Brendasue,
I remember how I felt three years ago when they finally diagnosed with RSD. It will be alright just try your best to find out as much as you can so you know what you are dealing with. I was scared to death because I had never heard of it and alot of doctors along the way kept saying you are getting better and stuff like that.I wasn't though and it makes you question your own sanity after awhile. Therese is right though don't let them make you feel crazy because you are not. We are all here anytime you want to vent or just talk about how things are going with you.My RSD started in my hands worse on the right one. I was assaulted and thrown into a stone wall. I have brachial plexus injuries to both sides(these are nerves deep in your chest and they help move your arms). You will beat this in your own way.Positive thinking is the best thing you can do to try to help heal. I know it is impossible to be positive all the time and I understand what you are saying,but all you can do is try your best. That is all anyone can do.I remember feeling like my whole world turned upside down and there are times to this day I still feel that way. RSD is rough,but everyone here is going through it along with you which I think helps a little.Do you have a good doctor that knows about RSD? This is real important! You don't want someone treating you who doesn't know about the disease.Please stay in touch and any info you need about the disease itself I would be glad to help you out. Read through our weekly discussions on the general board I think that might help you some. We also have some information and other links for RSD info on our main website at http://rsdoutreach.com. If you still have question just post and everyone here will help you. Talk to you soon.
Love,
Robyn
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