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 12-01-2010, 02:09 AM #1
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gramE gramE is offline
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gramE gramE is offline
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Heart mundane, commonplace reality

I'm a short timer with this chronic stuff.

My season just now is adapting to the commonplace reality of pain being a partner in every thing I do without growing weary and discouraged.

The days after an injection when in disbelief I'm nearly painfree go by so fast, and my desire to sleep through a flare(I know an oxymoron but I can dream)and awaken to a tolerable level on the moan and groan scale seem even welcomed in the face of everyday with pain, every chore with pain, every step with pain, constant examining to see if there is any change, longing to go out but not bad enough to suffer the consequences, wanting to have an overnighter with my grandchildren but knowing the stress is too much, looking for but not finding the vim, vigor, motivation, energy and enthusiasm you had before that day, in my case Jan 13, 2010, it all began.

And when someone, be it professional, family member, or acquaintance, dimishes by a word or two the extent of your suffering, you are seemingly made less. Validation is what we seek, not a pep talk or another challenge just to get over it.

Love covers a lot.

An embrace that says you are still ok with me and what can I do to help. A kind 1/2 hour chat on the phone to fill a long afternoon. Someone to walk beside me into church, regardless of how slow I go. Leaving me in the dust just highlights my snail-like pace. Asking how I am and wanting the short answer and hanging around for the long one, relieves me of some pent up frustration. Saved me some money on a counseling session.

Maybe I can get the courage to write this and somehow publish it in my local paper. I'm not the only one with chronic pain, and I'm sure I'm not the only one being left in the dust to walk alone into the church.

Ok, I think I'm done venting, but I don't know if I did it in the right forum. Psalm 147 says God does not delight in the feet of man. Oh, how I needed the comfort that verse brought. He delights in those who fear and obey Him. I'm learning to obey in the mundane everyday duties of life.

with a heart of gratitude and hope,
pat e
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Old 12-01-2010, 04:08 AM #2
gabbycakes gabbycakes is offline
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Quote:
Originally Posted by gramE View Post
I'm a short timer with this chronic stuff.

My season just now is adapting to the commonplace reality of pain being a partner in every thing I do without growing weary and discouraged.

The days after an injection when in disbelief I'm nearly painfree go by so fast, and my desire to sleep through a flare(I know an oxymoron but I can dream)and awaken to a tolerable level on the moan and groan scale seem even welcomed in the face of everyday with pain, every chore with pain, every step with pain, constant examining to see if there is any change, longing to go out but not bad enough to suffer the consequences, wanting to have an overnighter with my grandchildren but knowing the stress is too much, looking for but not finding the vim, vigor, motivation, energy and enthusiasm you had before that day, in my case Jan 13, 2010, it all began.

And when someone, be it professional, family member, or acquaintance, dimishes by a word or two the extent of your suffering, you are seemingly made less. Validation is what we seek, not a pep talk or another challenge just to get over it.

Love covers a lot.

An embrace that says you are still ok with me and what can I do to help. A kind 1/2 hour chat on the phone to fill a long afternoon. Someone to walk beside me into church, regardless of how slow I go. Leaving me in the dust just highlights my snail-like pace. Asking how I am and wanting the short answer and hanging around for the long one, relieves me of some pent up frustration. Saved me some money on a counseling session.

Maybe I can get the courage to write this and somehow publish it in my local paper. I'm not the only one with chronic pain, and I'm sure I'm not the only one being left in the dust to walk alone into the church.

Ok, I think I'm done venting, but I don't know if I did it in the right forum. Psalm 147 says God does not delight in the feet of man. Oh, how I needed the comfort that verse brought. He delights in those who fear and obey Him. I'm learning to obey in the mundane everyday duties of life.

with a heart of gratitude and hope,
pat e
Pat,
So well put. I have felt that exact way so many times. My dx was Jan,04 my injury occured April 03 so I was so close to that, "get the treatment quick" position. Now 7 years later I never thought after all I have been through, 7 surgeries, titanium joint replacement, 3 - 5 day inpatient ketamine procedures,14 SGB's, 1 trigger point, 4 Spinal epiduras, 10 months and off and on PT, and let's not forget dealing with insurances companies, doctors offices and there staff, which honestly once I found the right doctors it was pretty straight forward, oh and let's not forget I sued the facility I fell in was taken to a full jury trial and I won,talk about stress, settled on the 4th day, then had to go for SSD again a wait but successful and this is how I have been living my life for 7 years. And I have 2 older children 1 in college and 1 a Jr. in high school thank god there normal or relatively for that age group, but great young adults and I have a great husband who has taken such s... over the years.

I only list all this because I never, never thought that I would lead a so called normal life but today I work PT, I'm allowed to with SSD, I go to the gym which keep in mind back in the black whole as I call it I did not get out of bed until 20 minutes before my children got home from school. At that time they where much younger and I didn't want them to see all that. But I think somehow it made them realize it's all not fun and games in the real world.

At that time I only had 1 or 2 people my husband and my dad who really where the ones I went to who seemed to understand. When I was seeing a Psychiatrist and would me upset because I felt not that I was not believed but it was no big deal to most. But as he would say 1 most don't even know what RSD is, I didn't know what is was until I got it, and 2 most don't really care they say they do but really think about so you have to help yourself and go on. Much easier said then done.

So when you talk about being in bed my heart truly goes out to you I've been there and hated it. But if you ever need someone just to talk to "pass a long afternoon" ,PM your phone# if you like and I will be there for a fellow RSDer anytime.

I wish I had a fellow RSDer when I was going through the roughest part because it was hell. So I try and be there for others as much as I can.

Gabbycakes
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