Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 01-28-2010, 03:23 PM #21
Wilbyfree Wilbyfree is offline
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Originally Posted by snowboarder13 View Post
I dream of retreating to 9 years ago... Before my dad died, before I got RSD before I moved. I would make sure my Dad didnt die so if I still ended up getting RSD he would be there to help me, instead of trying to go at this alone. I feel lost all the time. I feel sad and empty all the time, knowing that I have something that will never go away, knowing that my dad isnt here to see me struggle through this and be proud of me for making it. I would go back to the park across the street from my old house and imagine myself playing with my dad there... RUNNING as if I'll never run again. I have only had RSD for 4 years but everyday I sit and ask what would this all be like if my dad was here to help...
Dear Snowboarder, Your Dad is with you everystep of the way to help you. Whenever you feel really down or scared, I bet you think of your dad. That is him in you. He is watching over you everyday and you will always be in his heart and he in yours. Unlike most of our families, he is aware of your pain and struggles. I would be very proud of you, I know he is. Enjoy your time with your dad, even if only for a moment, embrace it and go there just as you said, just you and your dad running and playing as you always have.

God Bless You, you are a special little creature!!

Jeanie
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Old 01-30-2010, 08:50 PM #22
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Originally Posted by keep smilin View Post
I have to ask..when RSD gets you down..where do you dream of re-treating to????? When you are forced to make life long changes in your life and others around you, your support system just carry on with their day...do you find yourself feeling sad or lost..best described as empty....

I have for a very long time thought of going to a mountain...a place where I can be alone and think..feel the warm breeze and even cry for myself...

Any of you have a place that you think about????

I send each of you, my friends a hug! KS
keep smilin....I too have always wished to have a place that gives me peace and comfort like nothing else will. Having crps for 15 yrs. now, I have waited for the special place to forget the pain and anxiety that can bring my mood to a lonely state, to materialize and make my search worth finding. I found that place by searching in the area I thought it would be. I try to get there at least once a yr. I take in the serenity and the beauty long enough to stay with me for the rest of each year. That special place is in the Grand tetons in wyoming. I think of it when my pain keeps me from living my life. I hope you find yours and it brings you comfort as well as peacefor youer soul. mellowguy
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RSD'ers... anyone else have a mountain???-img_0805-jpg  
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Old 01-30-2010, 09:00 PM #23
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keep smilin....I too have always wished to have a place that gives me peace and comfort like nothing else will. Having crps for 15 yrs. now, I have waited for the special place to forget the pain and anxiety that can bring my mood to a lonely state, to materialize and make my search worth finding. I found that place by searching in the area I thought it would be. I try to get there at least once a yr. I take in the serenity and the beauty long enough to stay with me for the rest of each year. That special place is in the Grand tetons in wyoming. I think of it when my pain keeps me from living my life. I hope you find yours and it brings you comfort as well as peacefor youer soul. mellowguy
So Mellowguy.... It is real!! Seems we all have a safe haven somewhere and you have found yours... I am so tickled that you did and I bet when you first discovered it and knew this was the place for you..you must have felt so "re-newed".. Like the first thing since RSD that you can went your way!! This sounds really crazy but I have times when I feel I could just exit and look for mine but know that my family would be crazy looking for me as the grocery store is a not even a solo trip for me!! Then again admittably, I can't go to the store alone as my condition limits me now... One thing for sure..we all have a place we want to visit in order to re-collect ourselves since RSD.... So how long do you stay at the GT in order to feel better and ready for the following year?? RSD.... What an animal!!!
Thanks for your note...KS
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Old 01-30-2010, 09:20 PM #24
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So Mellowguy.... It is real!! Seems we all have a safe haven somewhere and you have found yours... I am so tickled that you did and I bet when you first discovered it and knew this was the place for you..you must have felt so "re-newed".. Like the first thing since RSD that you can went your way!! This sounds really crazy but I have times when I feel I could just exit and look for mine but know that my family would be crazy looking for me as the grocery store is a not even a solo trip for me!! Then again admittably, I can't go to the store alone as my condition limits me now... One thing for sure..we all have a place we want to visit in order to re-collect ourselves since RSD.... So how long do you stay at the GT in order to feel better and ready for the following year?? RSD.... What an animal!!!
Thanks for your note...KS
well...I stayed as long as I could which was 1 week. I toured the area and found a serene place called Jenny Lake. The water is so pure you can drink from the lake since it is mountain snow fed. I took a chance going htere because your on your own there. No cell phone coverage or people. At the point I was feeling at the time,,I didn't care at all. I felt like I woke to a new beginning of my life. What works for some people doesn't work for all,,this worked for me. my pain was forgotten for the time I was there. I would go back in a heartbeat if i could. Thhanks for the reply...mellowguy
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Old 01-30-2010, 10:17 PM #25
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well...I stayed as long as I could which was 1 week. I toured the area and found a serene place called Jenny Lake. The water is so pure you can drink from the lake since it is mountain snow fed. I took a chance going htere because your on your own there. No cell phone coverage or people. At the point I was feeling at the time,,I didn't care at all. I felt like I woke to a new beginning of my life. What works for some people doesn't work for all,,this worked for me. my pain was forgotten for the time I was there. I would go back in a heartbeat if i could. Thhanks for the reply...mellowguy
Well then..you have found your spot!! It's a big world but if you or should I say we all can find the spot that makes us feel relaxed and make one with ourselves again.. then we then have at least an edge on our RSD... One day I will make it to my mountain...it will have to be an air lift drop as my RSD is in my legs, the worst and I am afraid of heights.... but in my mind my mountain experience will be much like the Bucket list!! I am setting no clocks...cell phone stays home and spray my loved ones as I don't want to be missed....

Thanks for your reply...
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Old 01-31-2010, 03:14 PM #26
hope4thebest hope4thebest is offline
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Dear friends,
I try to read the boards for a few brief moments but have not posted, as my 97 year old mother has been very ill with pneumonia..E.R. Paramedics, in the hospital. The reality of working full time, and my mother, now incapacitated, and needing full time care for now, is raining down on me...tryin' to hang on!
I've had very little sleep in the last 10 days..my brother came up to help but he has to go home in about 10 days..

I have an appt. next Monday, at Stanford Pain Center that I have been waiting a long time for, that I cannot miss...(W.C. finally approved it, only after a lot of letter writing, phone calls, etc.. )
everything, once again, is changing.

In skimming over the inspiring posts about favorite places,
I wanted to share my love for the ocean, it's source of comfort, many memories, and recollections of hiking along it's shores and coastal mountains with the waves glinting in the sun.

I can only hike in my mind (new sport...mind-hiking and mind-waling!) as the RSD is in my legs (and now possibley in shoulder, arm and jaw..
One night in RSD pain, (we all have those nights!) and trying to do deep breathing, I listened to a C.D. of ocean waves, and wrote a few lines in the middle of the night...

PACIFIC

I feel it breathe
with its ebb and flow
filling me, too, with frothy air
and sea bubbles.
It heaves with murky, ancient mystery.
It's constancy infuses me with hope.
..inhale, exhale, ebb and flow,
external respiration,
dear, old ocean-friend, always there,
Reminding me to smile and breathe again.
________________________________________

We receive comfort and inspiration from many sources, from Nature and from Spirit; it is uplifting to read and be bolstered by everyone's experience.
I think about all of you everyday..and you are my sources of inspiration.
Take good care, friends...I hope you are having some good moments and/or days of comfort! talk to you soon..

Much love,
hope4thebest
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mellowguy (01-31-2010), SandyRI (02-02-2010)
Old 01-31-2010, 04:48 PM #27
keep smilin keep smilin is offline
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Quote:
Originally Posted by hope4thebest View Post
Dear friends,
I try to read the boards for a few brief moments but have not posted, as my 97 year old mother has been very ill with pneumonia..E.R. Paramedics, in the hospital. The reality of working full time, and my mother, now incapacitated, and needing full time care for now, is raining down on me...tryin' to hang on!
I've had very little sleep in the last 10 days..my brother came up to help but he has to go home in about 10 days..

I have an appt. next Monday, at Stanford Pain Center that I have been waiting a long time for, that I cannot miss...(W.C. finally approved it, only after a lot of letter writing, phone calls, etc.. )
everything, once again, is changing.

In skimming over the inspiring posts about favorite places,
I wanted to share my love for the ocean, it's source of comfort, many memories, and recollections of hiking along it's shores and coastal mountains with the waves glinting in the sun.

I can only hike in my mind (new sport...mind-hiking and mind-waling!) as the RSD is in my legs (and now possibley in shoulder, arm and jaw..
One night in RSD pain, (we all have those nights!) and trying to do deep breathing, I listened to a C.D. of ocean waves, and wrote a few lines in the middle of the night...

PACIFIC

I feel it breathe
with its ebb and flow
filling me, too, with frothy air
and sea bubbles.
It heaves with murky, ancient mystery.
It's constancy infuses me with hope.
..inhale, exhale, ebb and flow,
external respiration,
dear, old ocean-friend, always there,
Reminding me to smile and breathe again.
________________________________________

We receive comfort and inspiration from many sources, from Nature and from Spirit; it is uplifting to read and be bolstered by everyone's experience.
I think about all of you everyday..and you are my sources of inspiration.
Take good care, friends...I hope you are having some good moments and/or days of comfort! talk to you soon..

Much love,
hope4thebest
Hope4thebest..... I am so so sorry for your ailing Mom and all of your concerns with taking care of her.... It is never easy to have our parents be ill...it crushes us!! I hope you can care for her in manner you wish to without too much pain.....

You and I have some real stuff in common!!!!! My RSD originated in my legs and is also in my shoulder, arm, jaw....I can understand the legs and arm stuff but jaw too???? Now that is weird!! Jaw pain even without chewing..nerve pain, right and does it radiate along the jaw line?? Myself.. I was tipped off because the most pain was near a tooth that has had a root canal so no nerve there to cause pain but my Endodontist can see a "halo" on the xray in the nerve bed...

Tell me you experience.... BTW... I loved reading your dream spot... it is wonderful and needed for us all to have a place of seclusion... I so want my mountain one day... but as yourself.. can not walk well so where am I going I ask ya??

Soft hugz...KS
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Old 02-02-2010, 08:19 AM #28
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Originally Posted by Wilbyfree View Post
Dear Snowboarder, Your Dad is with you everystep of the way to help you. Whenever you feel really down or scared, I bet you think of your dad. That is him in you. He is watching over you everyday and you will always be in his heart and he in yours. Unlike most of our families, he is aware of your pain and struggles. I would be very proud of you, I know he is. Enjoy your time with your dad, even if only for a moment, embrace it and go there just as you said, just you and your dad running and playing as you always have.

God Bless You, you are a special little creature!!

Jeanie
I just wish he was back. The funny thing is that when I try to snowboard when my pain is a little better i have this patch thing from his funeral, i have that in my snowpants pocket. It makes me feel like he is there with me. Thank you for what you have said, my heart is open to him all the time, and now I believe he is here watching me just like I hoped.
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Old 02-02-2010, 08:31 AM #29
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I just wish he was back. The funny thing is that when I try to snowboard when my pain is a little better i have this patch thing from his funeral, i have that in my snowpants pocket. It makes me feel like he is there with me. Thank you for what you have said, my heart is open to him all the time, and now I believe he is here watching me just like I hoped.
He is..don't doubt that... oh btw.. can we put the patch on a string or something of the like so nothing can happen to it?? I see that going thru the washer one day...keep the love in your heart and speak to you Dad... I am sure he is placing his hand on your shoulder as we speak!

KS
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Old 02-03-2010, 02:43 PM #30
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somewhere WARM... and quiet! With my boyfriend!!!
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