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 10-24-2011, 02:00 AM #1
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Default Getting Closer to SSDI

I know I have posted about this before, but after 2 years, I think I am within a gnat's eyelash of getting my SSDI.... I have jumped (actually limped) through the SS hoops and have one last one to go through. Wednesday I have my physical and it's the only day this year that I WISH it would RAIN!! It rained on the day of my psych review, which was a blessing in disguise because I felt like total crap and looked the part. I could barely walk and since it had rained for 10 days straight, you can just imagine how my mindset was. My friend Mary, who has been on SSI for 20 years said to me "you know they can tell when you fake it"...really?...really? Who in their right mind would try to fake such a horrible disorder that sucks the life right outta ya? Then she said "you know they can tell when you fake physical problems?"....really? Can someone fake shiny, sweaty, hairy, purple, blotchy, bloated, swollen skin along with a birth injury called Cerebral Palsy? I am so very sick of the words "fake, faker and faked" that I could just go totally nuts!!! I just had to vent because I think my friend is jealous because she only got SSI and didn't work enough years to get SSDI for which I DO qualify for because I worked for 25 years....I don't know what else to say except thanks for letting me vent and please pray that this is it...I don't know how much more I can take....
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Old 10-24-2011, 03:31 AM #2
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Originally Posted by cindi1965 View Post
I know I have posted about this before, but after 2 years, I think I am within a gnat's eyelash of getting my SSDI.... I have jumped (actually limped) through the SS hoops and have one last one to go through. Wednesday I have my physical and it's the only day this year that I WISH it would RAIN!! It rained on the day of my psych review, which was a blessing in disguise because I felt like total crap and looked the part. I could barely walk and since it had rained for 10 days straight, you can just imagine how my mindset was. My friend Mary, who has been on SSI for 20 years said to me "you know they can tell when you fake it"...really?...really? Who in their right mind would try to fake such a horrible disorder that sucks the life right outta ya? Then she said "you know they can tell when you fake physical problems?"....really? Can someone fake shiny, sweaty, hairy, purple, blotchy, bloated, swollen skin along with a birth injury called Cerebral Palsy? I am so very sick of the words "fake, faker and faked" that I could just go totally nuts!!! I just had to vent because I think my friend is jealous because she only got SSI and didn't work enough years to get SSDI for which I DO qualify for because I worked for 25 years....I don't know what else to say except thanks for letting me vent and please pray that this is it...I don't know how much more I can take....
Hey Cindi,
Tell your HATERation friend she can just go on hating b/c we all need people like her in this world to make our victories however small, much more sweeter! You should ask her why she's always thowing around the word "fake" is it a possibility she does that because she herself is a FAKER! I've learned in my life that the ones who accuse you or insinuate of stuff, even as casual as can be, are the exact ones guilty of doing it. BUT on a better note....I pray you do get it and this will be your last time! Btw...do you have to be completely out of work in order to qualify for disability? Have a blessed night dear!
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Old 10-24-2011, 08:47 AM #3
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I guess the word fake gets thrown around a lot because there's so much of it going on.
I knew this guy who after a truck accident sued for permanent back injury and won that and also was getting SSDI. He would come over to my house and be laughing doing cartwheels. A few bad apples ruin it for the rest of us.
It's because of people like him that we have to leap through sometimes mind exploding hoops. But just like Jenn said. I too wonder about those who say "fake" too much...

P.S.: This happened years ago and I don't know whether this is still going on or he got caught...
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Old 10-24-2011, 09:27 AM #4
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cindi1965, you''ll receive your SSDI. One thing my wife's lawyer asked her to do and that is dress normal at the hearing. Don't dress up. My wife wears loose clothing, uses no makeup, does pamper her long hair but that's about it.
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Old 10-26-2011, 02:59 AM #5
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@Jennifer..I have been out of work since Oct 2008 because they couldn't figure out what was going on and I was basically bed bound and had NO meds what so ever....I think that you have to be out of work for at least a year to get SSDI. I appreciate your input.. what island of Hawaii do you live?

@Jimking, don't worry, I def won't be dressed up or wear make-up...much to my husband's dismay I haven't shaved my legs for almost a week to show how black and coarse the hair on my left leg. My toes and to nails speak for themselves AND my face is so broken out from the stress of this appt, I look like a 46 year old teenager. I am staying up all night which isn't unusual. All of this is not faking...it's just showing everything about my RSD without trying to explain why I don't look sick when I wear make-up or nail polish to cover up my ugly toe nails. He'll definitely be able to notice my deformed big toe. As for clothing, I think I am going to have to wear PJ bottoms and a sweat shirt. Just thinking about all of this is making me systematic. I went to my 10 year old's running competion Monday and had to use my cane because I was so unsure about the bleacher's in the stadium and I overheard a former co-worker say to another co-worker "oh look, she breaks out that cane whenever she knows she being watched! Being watched by whom?!! The RSD police? I didn't say anything because I didn't want to embarrass my kid.... If I could do it I would be such an advocate for RSD/CRPS...one good thing about the comment is that it's been on my mind and if I think about it enough tomorrow the Internist giving me the physical may get a great RSD appearance!

@Jimbo...I know exactly what you mean about people like that. There are so many people in our community just like that. I am quite sure my parents could have gotten SSI for me as a child because of my cerebral palsy, but I am sure they would have thought it was welfare. BTW, my mother is going with me tomorrow to give them some input on how my CP has affected me over the years.
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Old 10-26-2011, 04:02 AM #6
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Cindi, although skin changes and the like make it easier to diagnose RSD, please remember that what's important to SS is your functional limitations. You might get a doc that understands RSD, but you might not...so don't assume he/she will look at your visible proof of RSD and understand the severity of your pain, and the effect it's had on your daily activities. I'm not sure I'm explaining this well...One of those nights...

Do you have a WC case as well? I ask because of the co-worker...

Sorry you had to hear that garbage.
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Old 10-26-2011, 05:49 AM #7
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you know you don't have to explain why sometimes you need assistance with walking and other times you don't. We all have good days and bad. I once got so feed up with people making little comments, I stopped someone and asked them if there was a problem. They of course said no. I said well its not polite to make fun of people in pain and I really don't appreciate it. You need to pull the coach aside and explain to them that some days are easier then others and give them a RSD a card from the RSDSA website.
I agree SSDI will look at your functional capability and if you use something to get around. They will also look at your pyschie.
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Old 10-26-2011, 08:24 AM #8
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Cindi,
Good luck at the doc's...
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Old 10-26-2011, 09:52 AM #9
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Good luck today! I hope it goes well for you.
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Old 10-26-2011, 01:01 PM #10
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Quote:
Originally Posted by cindi1965 View Post
@Jennifer..I have been out of work since Oct 2008 because they couldn't figure out what was going on and I was basically bed bound and had NO meds what so ever....I think that you have to be out of work for at least a year to get SSDI. I appreciate your input.. what island of Hawaii do you live?

@Jimking, don't worry, I def won't be dressed up or wear make-up...much to my husband's dismay I haven't shaved my legs for almost a week to show how black and coarse the hair on my left leg. My toes and to nails speak for themselves AND my face is so broken out from the stress of this appt, I look like a 46 year old teenager. I am staying up all night which isn't unusual. All of this is not faking...it's just showing everything about my RSD without trying to explain why I don't look sick when I wear make-up or nail polish to cover up my ugly toe nails. He'll definitely be able to notice my deformed big toe. As for clothing, I think I am going to have to wear PJ bottoms and a sweat shirt. Just thinking about all of this is making me systematic. I went to my 10 year old's running competion Monday and had to use my cane because I was so unsure about the bleacher's in the stadium and I overheard a former co-worker say to another co-worker "oh look, she breaks out that cane whenever she knows she being watched! Being watched by whom?!! The RSD police? I didn't say anything because I didn't want to embarrass my kid.... If I could do it I would be such an advocate for RSD/CRPS...one good thing about the comment is that it's been on my mind and if I think about it enough tomorrow the Internist giving me the physical may get a great RSD appearance!

@Jimbo...I know exactly what you mean about people like that. There are so many people in our community just like that. I am quite sure my parents could have gotten SSI for me as a child because of my cerebral palsy, but I am sure they would have thought it was welfare. BTW, my mother is going with me tomorrow to give them some input on how my CP has affected me over the years.
Take Heart Cindi,

It won't be long and you will be doing the SSDI happy dance.

About the cane. Just be happy that you could go the the event. Please don't become upset by folks who attack you-it is not good for your CRPS.

When someone attacks you or comes after you in anger just remember that kind of behavior says more about them and their issuers than about you!

Take care and better days are ahead for you!!!!!!
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