So it has been a while since I have let off steam, but here it goes. It
has been just shy of 2 years since the injury that left me with RSD.
Unfortunatly, it happened at work, NOW after ALL this time they are
refusing me medical care and the insurance RN is saying this & that~
Disputing my neruo surgon. OOOOOh when did RN come before MD? Only in
America , land of the free, where we cant get BASIC medical care, much
less care that could prevent spread, or worsening. Work comp dictates
what you can & cant have. I know a lot of people have it worse, but I
just need to vent. I am just so afraid and angry at times. Any guess
where I would like to put my cold purple swollen foot at this moment????

Julia,
I have it in my face, eyes, mouth and brain as well. It caused me  massive
dental surgery for what the rsd did to my teeth and gums. My eyes are  affected
as I had cataract surgery followd by yag lazer, then the rsd attacked  the new
lens, I am now on anti rejection drugs for this. As far as the brain, it  is
short term memory loss, inability to find the right word at the right  time.
Hope that helps with your question
Pain free days,
LizM


[Non-text portions of this message have been removed]

I am now to be referred to as Dr. Jenkins haha ;) Took me about a month to get
fully accredited, but after ringing these ppl 1-801-697-0461 they got me setup
at an international uni and had me my BA in no time.

My daughter 22, has facial RSD. Im interested to talk with anyone that
has facial RSD. It is in her back also. Im interested anyone in the
Ft.Lauderdale, Fl. area that knows of any support groups for RSD.

Thanks, Julia

Although I did not know them, it still brings me great sadness to
know that they are no longer here to offer friendship and support to
others. I offer condolences to those of you that knew and supported
them, and thank them for their support. My thoughts are with their
friends and families.


--- In rsdsupport1@yahoogroups.com, "Dori Beynon" <woebey@...> wrote:
>
> Just wanted to share the  sad news of the loss of two very dear RSD
friends. Both of these came as a complete surprise.
>
> Marilee (aka, Dove) Poletsky of Canton Ohio passed away early this
morning.Marilee was just 50 years old and had battled with RSD for 10
years. Many in the RSD community will probably best remember her for
the prayers that she used to write on a daily basis and share with
us. Marilee had been sick and bedridden for the last 3 weeks but her
daughter said that yesterday she was playing with the grandkids and
had eaten some, so it was not expected.
>
> Andy Rutter of Fort Littleton, PA passed away yesterday. Andy has
also suffered from RSD for many many years and just recently
underwent surgery and had developed an infection but we thought he
was doing much better. He is best known as RSDPAPA or popsnodgrass
and was a co-owner of the RSDVictims support group. He leaves behind
a 14 year old son named Kenny.
>
> Please keep their families and friends in your prayers and if
anyone would like further information, feel free to contact me.
> RSD friends
> Dori
>
>
> [Non-text portions of this message have been removed]
>

Just wanted to share the  sad news of the loss of two very dear RSD friends.
Both of these came as a complete surprise.

Marilee (aka, Dove) Poletsky of Canton Ohio passed away early this
morning.Marilee was just 50 years old and had battled with RSD for 10 years.
Many in the RSD community will probably best remember her for the prayers that
she used to write on a daily basis and share with us. Marilee had been sick and
bedridden for the last 3 weeks but her daughter said that yesterday she was
playing with the grandkids and had eaten some, so it was not expected.

Andy Rutter of Fort Littleton, PA passed away yesterday. Andy has also suffered
from RSD for many many years and just recently underwent surgery and had
developed an infection but we thought he was doing much better. He is best known
as RSDPAPA or popsnodgrass and was a co-owner of the RSDVictims support group.
He leaves behind a 14 year old son named Kenny.

Please keep their families and friends in your prayers and if anyone would like
further information, feel free to contact me.
RSD friends
Dori


[Non-text portions of this message have been removed]

When it rains it pours <and not talking about the weather.
I went to the oral surgeon on Tuesday, having stopped at Dr. Hashmi's
office first to have my jaw blocked. The blocks worked as far as I
never felt any of the marcaine shots from the surgeon. The very first
thing she did was cut open all my bottom gums, then she went to pull
the first of 5 bottom teeth <took 12 last month>, the tooth came out
but one root wouldn't come out. As she dug deeper, she found a tumor
the size of a golf ball in my jawbone. It didn't show and I had never
felt it. The other extractions went routinely. She did some bone
grafting and finally closed me up.
That first night It looked as if I was going to bleed to death, two
doubled over towels and the blood still made it down to the pillow. I
woke at 4 am in agony and my entire right shoulder and upper arm were
crimson with blood. The next day she had me back, cut the sutures out
and re closed everything, same thing the next night only this time,
massive blood clots. I am going back today as the left side of my
face is so swollen I can't open the eye, plus am still in major pain.
Dr. Hashmi had me come off my nalbuphine injectable so I could take
demol or vocodin, thankfully as I am needing them so much.
Still waiting on the pathology about the tumor.

Follow up, today the surgeon once again cut out the sutures and re
did them double the amount today. Then I saw Dr. Hashmi who has me
back on the drags patch plus fentyl lollipops plus a super strong
topical painkiller, used for minor hospital procedures. I look like I
lost a battel, swollen doesn't even cover it, not to mention all the
bruising.
PFD's to all,
LizM

Hello,

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group.

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to select one.

Hi all,
My name is Liz and I have had rsd for two years following a fall that
broke both my legs and shattered my left thigh, even worse, this was in
France while on a working vacation.
The rsd has spread to all 4 limbs, my face and my brain. Since it moved
to my face I am in the process of a $30,000 mouth makeover. Tomorrow
they will do the bottom jaw, they did the top last month, cut open all
my gums, bone grafting, pull another 6 teeth <last time they took 12>,
and finally suture me back together.
Doubt I will be posting for a few days as the last time I saw the oral
surgeon, the rsd kicked me into bed for 5 days.

Wishing all PFD's,

Liz

Sarah,\
I sent you a private email. Please let me know if you don't get it.
Angel Hugs,
Dori

[Non-text portions of this message have been removed]

Hi Everyone,

I just joined this group. I've not been diagnosed with RSD as I keep
being pushed aside by my dr whenever I bring up the topic of the pain
I have in my legs, but my chiropractor/homeopathic dr suggested to me
that I may have a mild form of rsd.

I've had pains in both legs that happens sporadically, and for no real
reason I can remember, that have been with me since I was a small
child. They used to pass it off as "growing pains" but I always knew
that it was more than that. I'm an adult now, and it bothers me just
as much. When the pain hits, it usually effects only one leg, but
sometimes both, and on the days when it's bothering both legs, I can
barely walk. My legs and feet get really cold, and often turn
purple/blue. The only thing that helps is heat. I often times will
curl up with a hot water bottle and just wait for it to pass.

I've started reading up on RSD and I'm not sure if this is what is
going on with me or not. I don't remember any injury which seems to be
the precursor to this syndrome, but it's been with me since I was very
small, so I might just not be remembering things clearly. How does one
get diagnosed or checked for rsd?

Any thoughts?

-Sarah

hi thanks for the info all of you... I have gotten a lawayer and so far things
are great he walked into court with no lawyer and a bad attitude and left with
supervised visitation at my parents and a $100 a week child support. I tried to
find out when he wants to see his son and was toldd that he was angry and felt
unjust and is getting a lawyer the next day and would work it out that way..
Well it started may 17, then this court order happened may 25 also when I was
told he was getting a lawyer the next day... Well I seen my lawyer yesterday and
he hadent heard a word from my ex or a lawter whichis a little concerning
because his father told us both he would have a lawyer the next day and his
father can surely afford it.. the lawyer said he doesent feel we have anything
to worry about but at the same time this is a little concerning, I know him and
he is not done yet and is up to something, but what?  Then on the way back were
at a red light and who comes aside us.. him
  and he looked smiled a smirky smile, the same one that sends chills down my
spine and now Im scared. So I have been racking my brain and the only thing I
came up with is my ex.

   He was an convicted felon and we had a few disputes about 5 or more years ago
but no charges ever made and I stayed friends with his sister. He recently got
arrested 6+ months ago and I went with his sister to see him and my son was with
us sleeping...........but i wouldnt think this could be used against me either,
we were in a safe place, he wasent even 2 and thats it but thats the only thing
I can think of .. do you think this could matter, I dont see how but then again
I never know I have never been arrested nor in trouble or in a custody dispute.

    Im just so scared he is so cruel to any extent, he never spent much of anyy
time and if time little to no attention to our son, his mom and step father were
both in mental wards as well as his sister, he has a horrible drinking problem
along with gambling and drugs and ontop of it all he is nastily predjudice its
scary.

   Its just I know he wouldnt have not got a lawyer and I know he would have
contacted mine (lawyer) if he felt he had no choice but to make a deal and then
that smirk yesterday.. Im petrified. Anyone know the rules about being friends
with a convict buut not a violent one and you have never been in trouble thouh.



There is 1 message in this issue.

Topics in this digest:

1. Re: rsd and custody serious need of help
From: "jenn wilding" jennwilding@...

________________________________________________________________________
________________________________________________________________________

Message 1
From: "jenn wilding" jennwilding@...
Date: Fri May 19, 2006 0:56pm(PDT)
Subject: Re: rsd and custody serious need of help

Hi Diane,

I also agree that you need a lawyer, I am from NY and have had to deal wit my ex
suing me for custody and has never won. I did not have this monster at the time,
but custody issues are not about who can physically take care of your son, but
who is the better parent and who has te most stability. Also, if you are not
currently working you can apply for leagal aid, I'm not sure what part of NY you
are in, I was in Orange County. Your ex Can Not take or get custody of your son
just because you have RSD, he needs to prove that you are unfit as a parent,
with all the extra, close family support you have I don't think that should be
an issue. I think he should be worried about his rap sheet, and by the way do
you have dated pictures of the bruises on your body, and are the pictures taken
so that they can see you and your face in them, this way there is no denying
that it's you. When you go to court make sure that you have copies of all his
brushes with any and
all police depts., and most of all be honest and be you, the judge can not take
your son away just because you have RSD. If they did that, then everyone that
had a disease or syndrome would loose their children. Good luck, and keep in
touch, let me know how things turn out.
Many huggs and kisses,
Jennifer

"Diane .H." wrote:
I havent wrote in a while I have been having bad days and I just
left my sons father. I had been seeking abuse counseling for a
couple of months now because he wasent great before the disease but
became terrible after. In tje beginning he was okay but within 3
months of my fall he began getting meaner and meaner, stole my meds
took what very little money I had, would refuse to push me in my
wheelchair ever and dint want to be seen with me unless I had a good
day and walked, wheelhairs embarased him, well he finally hit me for
the first time yesterday. I made a police repot and have been seeing
a domestic abuse hotline for months so I packed all my sons and I
clothes all his toys my family and I purchased, my dresser , one of
the babies bed the one given to me not the one he bought , my 2
small tvs and a thrift store vcr and a playstation and left him
with the babies bed he brought, the babies and his dresser and both
our beds the one we have packed, the BIG tv, china closent with all
my fine dishware, all photos except the ones of just me and the baby
the dishes couch entertainment center, nicknakes all the nice art
work, my 2 antique endtable and chip in dale mirror(these 2 id like
back) the bar, basically almost everything and now he says he is
going to tell them I took more than my share.


The main reason Im writing is because I have RSD pretty bad and
have to go to the er atleasrt once a month for pain but because they
hav been tril and erroring and I now need to find a hospitol or
clinic in new york who can figure all whats wrong they think sd and
other nerve damage(if anyone knows any Ill be very grateful) but as
you all no you have good and bad days butI always care for my son
whether Im in pain or not and on te absolute unbearable days we stay
at my moms and she watches him or if I need or want she also can
take meto my appointments or hospitol and my aunt or grandma can
watch my baby boy... but the father says no judge will give me
custody becuse of the rsd. Is this true? I have plenty of help and
good and bad days and getting in for treatments and have always
taken care of him can the father really take custody from me? Im
scared do disabled parents have rights to keep custody ? Can the
other parent who is not disabled but had a past dwi, 2 bar fights a
drinking and gambling problem, a dropped harassment charge that got
dropped and now the bruises on me realy win custody just because im
hurt? Whats my disability parental rights, I live in ny any help or
even where to ask would be greatly appreciated. Thanks






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---------------------------------
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[Non-text portions of this message have been removed]

hi thanks for the info all of you... I have gotten a lawayer and so far things
are great he walked into court with no lawyer and a bad attitude and left with
supervised visitation at my parents and a $100 a week child support. I tried to
find out when he wants to see his son and was toldd that he was angry and felt
unjust and is getting a lawyer the next day and would work it out that way..
Well it started may 17, then this court order happened may 25 also when I was
told he was getting a lawyer the next day... Well I seen my lawyer yesterday and
he hadent heard a word from my ex or a lawter whichis a little concerning
because his father told us both he would have a lawyer the next day and his
father can surely afford it.. the lawyer said he doesent feel we have anything
to worry about but at the same time this is a little concerning, I know him and
he is not done yet and is up to something, but what?  Then on the way back were
at a red light and who comes aside us.. him
  and he looked smiled a smirky smile, the same one that sends chills down my
spine and now Im scared. So I have been racking my brain and the only thing I
came up with is my ex.

   He was an convicted felon and we had a few disputes about 5 or more years ago
but no charges ever made and I stayed friends with his sister. He recently got
arrested 6+ months ago and I went with his sister to see him and my son was with
us sleeping...........but i wouldnt think this could be used against me either,
we were in a safe place, he wasent even 2 and thats it but thats the only thing
I can think of .. do you think this could matter, I dont see how but then again
I never know I have never been arrested nor in trouble or in a custody dispute.

    Im just so scared he is so cruel to any extent, he never spent much of anyy
time and if time little to no attention to our son, his mom and step father were
both in mental wards as well as his sister, he has a horrible drinking problem
along with gambling and drugs and ontop of it all he is nastily predjudice its
scary.

   Its just I know he wouldnt have not got a lawyer and I know he would have
contacted mine (lawyer) if he felt he had no choice but to make a deal and then
that smirk yesterday.. Im petrified. Anyone know the rules about being friends
with a convict buut not a violent one and you have never been in trouble thouh.



There is 1 message in this issue.

Topics in this digest:

1. Re: rsd and custody serious need of help
From: "jenn wilding" jennwilding@...

________________________________________________________________________
________________________________________________________________________

Message 1
From: "jenn wilding" jennwilding@...
Date: Fri May 19, 2006 0:56pm(PDT)
Subject: Re: rsd and custody serious need of help

Hi Diane,

I also agree that you need a lawyer, I am from NY and have had to deal wit my ex
suing me for custody and has never won. I did not have this monster at the time,
but custody issues are not about who can physically take care of your son, but
who is the better parent and who has te most stability. Also, if you are not
currently working you can apply for leagal aid, I'm not sure what part of NY you
are in, I was in Orange County. Your ex Can Not take or get custody of your son
just because you have RSD, he needs to prove that you are unfit as a parent,
with all the extra, close family support you have I don't think that should be
an issue. I think he should be worried about his rap sheet, and by the way do
you have dated pictures of the bruises on your body, and are the pictures taken
so that they can see you and your face in them, this way there is no denying
that it's you. When you go to court make sure that you have copies of all his
brushes with any and
all police depts., and most of all be honest and be you, the judge can not take
your son away just because you have RSD. If they did that, then everyone that
had a disease or syndrome would loose their children. Good luck, and keep in
touch, let me know how things turn out.
Many huggs and kisses,
Jennifer

"Diane .H." wrote:
I havent wrote in a while I have been having bad days and I just
left my sons father. I had been seeking abuse counseling for a
couple of months now because he wasent great before the disease but
became terrible after. In tje beginning he was okay but within 3
months of my fall he began getting meaner and meaner, stole my meds
took what very little money I had, would refuse to push me in my
wheelchair ever and dint want to be seen with me unless I had a good
day and walked, wheelhairs embarased him, well he finally hit me for
the first time yesterday. I made a police repot and have been seeing
a domestic abuse hotline for months so I packed all my sons and I
clothes all his toys my family and I purchased, my dresser , one of
the babies bed the one given to me not the one he bought , my 2
small tvs and a thrift store vcr and a playstation and left him
with the babies bed he brought, the babies and his dresser and both
our beds the one we have packed, the BIG tv, china closent with all
my fine dishware, all photos except the ones of just me and the baby
the dishes couch entertainment center, nicknakes all the nice art
work, my 2 antique endtable and chip in dale mirror(these 2 id like
back) the bar, basically almost everything and now he says he is
going to tell them I took more than my share.


The main reason Im writing is because I have RSD pretty bad and
have to go to the er atleasrt once a month for pain but because they
hav been tril and erroring and I now need to find a hospitol or
clinic in new york who can figure all whats wrong they think sd and
other nerve damage(if anyone knows any Ill be very grateful) but as
you all no you have good and bad days butI always care for my son
whether Im in pain or not and on te absolute unbearable days we stay
at my moms and she watches him or if I need or want she also can
take meto my appointments or hospitol and my aunt or grandma can
watch my baby boy... but the father says no judge will give me
custody becuse of the rsd. Is this true? I have plenty of help and
good and bad days and getting in for treatments and have always
taken care of him can the father really take custody from me? Im
scared do disabled parents have rights to keep custody ? Can the
other parent who is not disabled but had a past dwi, 2 bar fights a
drinking and gambling problem, a dropped harassment charge that got
dropped and now the bruises on me realy win custody just because im
hurt? Whats my disability parental rights, I live in ny any help or
even where to ask would be greatly appreciated. Thanks






SPONSORED LINKS
Disease and conditions

---------------------------------
YAHOO! GROUPS LINKS


Visit your group "rsdsupport1" on the web.

To unsubscribe from this group, send an email to:
rsdsupport1-unsubscribe@yahoogroups.com

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.


---------------------------------





---------------------------------
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[Non-text portions of this message have been removed]



________________________________________________________________________
________________________________________________________________________



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How low will we go? Check out Yahoo! Messenger’s low  PC-to-Phone call rates.

[Non-text portions of this message have been removed]

Diane  if you have yahoo messenger  please Im me at happy1to2004@... so i
can talk to you

   Jan

"Diane .H." <rsdpain05@...> wrote:
   Hi eveyone its Diane I havent been able to post in a while since I
finally just found a place thats able to deal and willing to with this
monster disease. Then theres the fact of my now ex. If you have
remembered me from before a lot of my inserts have to do with help,
questions but also the mistreatment of this man. He has been so angry
for so long and has been so angry since this started and although he
was always a control freak and little bylittle more and more came
through. Well when I got hurt the worst it got the worst he did as if
he took my vulnerability as a way to get more control then he was ever
able to have before. Well I have been seeing a counselor since a month
or two after I got hurt last March but about 2-3 months ago I took the
step of seeing a domestic abuse counselor. Turns out I had been slowly
verbally abused to the point he had me a hole and feeling lower than
low... But the one thing I always said was he would NEVER hit me. Well



i was wrong on may 17 he did and out of pure shock and still dont
understand how or why at that moment, needless to say he had been
kneeling down cleaning dog pee and i was putting my stuff on the couch
so he could drop me off at my moms with my son while he went to work
and we had been mildly argueing when BAMMMM! I dont know how or witrh
what arm but ablow to my outer left thigh ( the place where the Rsd
started and was worst)

To make the story short I left w/ my son, got an order of protection
and filed for custody. Had to go to the hospitol from the terrible
agonizing pain where I couldnt wear pants for days they took pictures
and my case was already built.

Then I heard about forensic nurses and how they mean the world in
court and they have the best cameras so there was no way he could deny
it, thought it was the best thing I could do!

   So today I get a call my huge bruise lacked usual pattern and
stronger damage in some areas than other that arent usually associated
with a single hit.

   WOW shocked isnt the word and petrified that maybe now he can deny
it and the judge may give the monster our son fully and worst of all
without the anger counsiling I wanted ordered , I didnt have him
arrested I just wanted my son and I to be safe and him to see he needs
help.

   I know what happened and he even told me when it happened I had
deserved it and left our son and I there without a ride to my mms with
me in terrible pain it took all my strength to call the neighbor and
mom and go to court house and hospitol to do what I had to do, So I
cant possibly see how my forensic photos of the bruise dont fit a
pattern of normal incidences like that, then it hit me, this disease
does so many things to us all that make no sense and dont seem
believable sometimes and thats the only thing I can think of.

PLEASE PLEASE if anyone knows if this disease can make us bruise
oddly or whatever else you would say, strangely, I dont know if ANYONE
knows Anything that may help PLEASE help I dont knopw what to do when
you know you have done nothing wrong, i wanted to take the extra step
to show the world about his cruelty and look what happened, Please
help I cant see how this is feaseable.
                               feeling lost and shocked and confused
and scared for my son and I
                                 Diane





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---------------------------------





---------------------------------
Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Non-text portions of this message have been removed]

Hi eveyone its Diane I havent been able to post in a while since I
finally just found a place thats able to deal and willing to with this
monster disease. Then theres the fact of my now ex. If you have
remembered me from before a lot of my inserts have to do with help,
questions but also the mistreatment of this man. He has been so angry
for so long and has been so angry since this started and although he
was always a control freak and little bylittle more and more came
through. Well when I got hurt the worst it got the worst he did as if
he took my vulnerability as a way to get more control then he was ever
able to have before. Well I have been seeing a counselor since a month
or two after I got hurt last March but about 2-3 months ago I took the
step of seeing a domestic abuse counselor. Turns out I had been slowly
verbally abused to the point he had me a hole and feeling lower than
low... But the one thing I always said was he would NEVER hit me. Well



i was wrong on may 17 he did and out of pure shock and still dont
understand how or why at that moment, needless to say he had been
kneeling down cleaning dog pee and i was putting my stuff on the couch
so he could drop me off at my moms with my son while he went to work
and we had been mildly argueing when BAMMMM! I dont know how or witrh
what arm but ablow to my outer left thigh ( the place where the Rsd
started and was worst)

  To make the story short I left w/ my son, got an order of protection
and filed for custody. Had to go to the hospitol from the terrible
agonizing pain where I couldnt wear pants for days they took pictures
and my case was already built.

  Then I heard about forensic nurses and how they mean the world in
court and they have the best cameras so there was no way he could deny
it, thought it was the best thing I could do!

   So today I get a call my huge bruise lacked usual pattern and
stronger damage in some areas than other that arent usually associated
with a single hit.

   WOW shocked isnt the word and petrified that maybe now he can deny
it and the judge may give the monster our son fully and worst of all
without the anger counsiling I wanted ordered , I didnt have him
arrested I just wanted my son and I to be safe and him to see he needs
help.

   I know what happened and he even told me when it happened I had
deserved it and left our son and I there without a ride to my mms with
me in terrible pain it took all my strength to call the neighbor and
mom and go to court house and hospitol to do what I had to do, So I
cant possibly see how my forensic photos of the bruise dont fit a
pattern of normal incidences like that, then it hit me, this disease
does so many things to us all that make no sense and dont seem
believable sometimes and thats the only thing I can think of.

  PLEASE PLEASE if anyone knows if this disease can make us bruise
oddly or whatever else you would say, strangely, I dont know if ANYONE
knows Anything that may help PLEASE help I dont knopw what to do when
you know you have done nothing wrong, i wanted to take the extra step
to show the world about his cruelty and look what happened, Please
help I cant see how this is feaseable.
                               feeling lost and shocked and confused
and scared for my son and I
                                 Diane

-This is why we are ALL here. To help each other when needed and just
listen when we are not. I am in a rough patch myself, but know you
all are aout there, praying, cheering, what ever it is you all do. I
dont stand ( gimp) alone.









-- In rsdsupport1@yahoogroups.com, diane hotaling <rsdpain05@...>
wrote:
>
> Thank you sweetie I needed that. Things have been tough and the sad
part is I still feel bad when I shouldnt. He ended up hitting me and
I left with my son and got an order of protection. He then called the
cops with allegations of my om being an alcoholic and me a druggy
(failing to say its prescribed), then he called cps the next day with
charges against my mom and I saying we are child neglectors and my
father molested me... of course he has no proof and little does he
know I seen the same pediatrician my brothers and I had along with my
son all my child hood and he knows he is full of crap, and I have
adhd and seen a counselor since young and so of course they would
have known then he said he never hit a girl in his life and not me
but then says he swung back behind him out of reaction and hit my
left knee... the way he wrote it its impossible besides I have a
noticable fist mark... He repetitioned me telling the judge Im a
nasty evil person and yet I haventt put him in
>  jail because all I wanted was my son and I to be safe.... It hurts
so bad to hear all these awful lies he wrote and he was the one who
hurt me, I hate having my son away from his dad but his dad needs
serious help but Im not even sure if he even sees how sick he is!
The good thing is I finally found real help at mount sinai hospital
city in new york city and they diagnosed it fully right away
scheduled my first treatment on june 7 and gave me a tape about the
next step because they dont think the blocks are going to help but
they have to take the steps, but they are serious about this disease
and its time progression and are attacking it full force, so thats
exciting.
>
>   But I have court tomorrow with this jerk and Im afraid to see him
I never thought he was capable of hitting me, and then to lie and say
such horrible things and so I dont know what he is going to try
next... I did find out rsd is in the disability rights act and is
discrimination and so your right and thanks again for a actual story
to give me confidence i needed it. Youve always been there for me
since the start you have been my saint thank you from the bottom of
my heart!!!!!!!!!!!!!
>
> rsdsupport1@yahoogroups.com wrote:
>
> There is 1 message in this issue.
>
> Topics in this digest:
>
> 1. Diane:
> From: "leonard_2480" QTDs@...
>
>
______________________________________________________________________
__
>
______________________________________________________________________
__
>
> Message 1
> From: "leonard_2480" QTDs@...
> Date: Tue May 23, 2006 9:06am(PDT)
> Subject: Diane:
>
> I know a man with RSD n both legs, arms and back. He is in sad
shape.
> He has cancer for the second time. He is on medicare. His Ex wife
is a
> nurse, and is in prime health. Works out 4 or 5 days a week and
makes
> good money. She wasnt abusive. Not only did he have crap for a
lawyer
> because he had no money~ she took it for breast implants~ She makes
> good bucks as a nurse. Not only did he get custody of thier
daughter...
> BUT he won custody of the older daughter that wasnt even his to
begin
> with!! Keep journaling everything he does and call the cops and
dont
> back out of it. You need to realize it is NOT RSD or YOU that made
him
> like this. He is what he is. FIGHT FIGHT FIGHT. go, call internet
what
> you can to find help. Ask lawyer after lawyer. Dont worry about him
> accusing you about taking "stuff" it is just "stuff" plan your
attack
> as he is and stop worring about the disabled part. This guy has got
you
> thinking what he wants you too. It makes not a heck of a lot of
> diffrence. Judges ..well most anyway, are NOT stupid. They
themselves
> dont want to get caught up in a discrimination suit. I know its
hard
> and your down. But you need to find what little you have left to
fight
> for the babies.
>
>
>
>
>
>
>
______________________________________________________________________
__
>
______________________________________________________________________
__
>
>
>
> --------------------------------------------------------------------
----
> Yahoo! Groups Links
>
>
>
>
> --------------------------------------------------------------------
----
>
>
>
>
>
>
>
> ---------------------------------
> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls.
Great rates starting at 1&cent;/min.
>
> [Non-text portions of this message have been removed]
>

need a house or a better deal on your existing       home?
http://www.positionyourself.info/syps cant be beaten

Thank you sweetie I needed that. Things have been tough and the sad part is I
still feel bad when I shouldnt. He ended up hitting me and I left with my son
and got an order of protection. He then called the cops with allegations of my
om being an alcoholic and me a druggy (failing to say its prescribed), then he
called cps the next day with charges against my mom and I saying we are child
neglectors and my father molested me... of course he has no proof and little
does he know I seen the same pediatrician my brothers and I had along with my
son all my child hood and he knows he is full of crap, and I have adhd and seen
a counselor since young and so of course they would have known then he said he
never hit a girl in his life and not me but then says he swung back behind him
out of reaction and hit my left knee... the way he wrote it its impossible
besides I have a noticable fist mark... He repetitioned me telling the judge Im
a nasty evil person and yet I haventt put him in
  jail because all I wanted was my son and I to be safe.... It hurts so bad to
hear all these awful lies he wrote and he was the one who hurt me, I hate having
my son away from his dad but his dad needs serious help but Im not even sure if
he even sees how sick he is!  The good thing is I finally found real help at
mount sinai hospital city in new york city and they diagnosed it fully right
away scheduled my first treatment on june 7 and gave me a tape about the next
step because they dont think the blocks are going to help but they have to take
the steps, but they are serious about this disease and its time progression and
are attacking it full force, so thats exciting.

   But I have court tomorrow with this jerk and Im afraid to see him I never
thought he was capable of hitting me, and then to lie and say such horrible
things and so I dont know what he is going to try next... I did find out rsd is
in the disability rights act and is discrimination and so your right and thanks
again for a actual story to give me confidence i needed it. Youve always been
there for me since the start you have been my saint thank you from the bottom of
my heart!!!!!!!!!!!!!

rsdsupport1@yahoogroups.com wrote:

There is 1 message in this issue.

Topics in this digest:

1. Diane:
From: "leonard_2480" QTDs@...

________________________________________________________________________
________________________________________________________________________

Message 1
From: "leonard_2480" QTDs@...
Date: Tue May 23, 2006 9:06am(PDT)
Subject: Diane:

I know a man with RSD n both legs, arms and back. He is in sad shape.
He has cancer for the second time. He is on medicare. His Ex wife is a
nurse, and is in prime health. Works out 4 or 5 days a week and makes
good money. She wasnt abusive. Not only did he have crap for a lawyer
because he had no money~ she took it for breast implants~ She makes
good bucks as a nurse. Not only did he get custody of thier daughter...
BUT he won custody of the older daughter that wasnt even his to begin
with!! Keep journaling everything he does and call the cops and dont
back out of it. You need to realize it is NOT RSD or YOU that made him
like this. He is what he is. FIGHT FIGHT FIGHT. go, call internet what
you can to find help. Ask lawyer after lawyer. Dont worry about him
accusing you about taking "stuff" it is just "stuff" plan your attack
as he is and stop worring about the disabled part. This guy has got you
thinking what he wants you too. It makes not a heck of a lot of
diffrence. Judges ..well most anyway, are NOT stupid. They themselves
dont want to get caught up in a discrimination suit. I know its hard
and your down. But you need to find what little you have left to fight
for the babies.






________________________________________________________________________
________________________________________________________________________



------------------------------------------------------------------------
Yahoo! Groups Links




------------------------------------------------------------------------







---------------------------------
Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls.  Great rates
starting at 1¢/min.

[Non-text portions of this message have been removed]

I know a man with RSD n both legs, arms and back. He is in sad shape.
He has cancer for the second time. He is on medicare. His Ex wife is a
nurse, and is in prime health. Works out 4 or 5 days a week and makes
good money. She wasnt abusive. Not only did he have crap for a lawyer
because he had no money~ she took it for breast implants~ She makes
good bucks as a nurse. Not only did he get custody of thier daughter...
BUT he won custody of the older daughter that wasnt even his to begin
with!! Keep journaling everything he does and call the cops and dont
back out of it. You need to realize it is NOT RSD or YOU that made him
like this. He is what he is. FIGHT FIGHT FIGHT. go, call internet what
you can to find help. Ask lawyer after lawyer. Dont worry about him
accusing you about taking "stuff" it is just "stuff" plan your attack
as he is and stop worring about the disabled part. This guy has got you
thinking what he wants you too. It makes not a heck of a lot of
diffrence. Judges ..well most anyway, are NOT stupid. They themselves
dont want to get caught up in a discrimination suit. I know its hard
and your down. But you need to find what little you have left to fight
for the babies.

Hi Diane,

                 I also agree that you need a lawyer, I am from NY and have had
to deal wit my ex suing me for custody and has never won. I did not have this
monster at the time, but custody issues are not about who can physically take
care of your son, but who is the better parent and who has  te most stability.
Also, if you are not currently working you can apply for leagal aid, I'm not
sure what part of NY you are in, I was in Orange County. Your ex Can Not take or
get custody of your son just because you have RSD, he needs to prove that you
are unfit as a parent, with all the extra, close family support you have I don't
think that should be an issue. I think he should be worried about his rap sheet,
and by the way do you have dated pictures of the bruises on your body, and are
the pictures taken so that they can see you and your face in them, this way
there is no denying that it's you. When you go to court make sure that you have
copies of all his brushes with any and
  all police depts., and most of all be honest and be you, the judge can not take
your son away just because you have RSD. If they did that, then everyone that
had a disease or syndrome would loose their children. Good luck, and keep in
touch, let me know how things turn out.
                                                                         Many
huggs and kisses,
                                                                                 
Jennifer

"Diane .H." <rsdpain05@...> wrote:
   I havent wrote in a while I have been having bad days and I just
left my sons father. I had been seeking abuse counseling for a
couple of months now because he wasent great before the disease but
became terrible after. In tje beginning he was okay but within 3
months of my fall he began getting meaner and meaner, stole my meds
took what very little money I had, would refuse to push me in my
wheelchair ever and dint want to be seen with me unless I had a good
day and walked, wheelhairs embarased him, well he finally hit me for
the first time yesterday. I made a police repot and have been seeing
a domestic abuse hotline for months so I packed all my sons and I
clothes all his toys my family and I purchased, my dresser , one of
the babies bed the one given to me not the one he bought , my 2
small tvs and a thrift store vcr  and a playstation and left him
with the babies bed he brought, the babies and his dresser and both
our beds the one we have packed, the BIG tv, china closent with all
my fine dishware, all photos except the ones of just me and the baby
the dishes couch entertainment center, nicknakes all the nice art
work, my 2 antique endtable and chip in dale mirror(these 2 id like
back) the bar, basically almost everything and now he says he is
going to tell them I took more than my share.


The main reason Im writing is because I have RSD pretty bad and
have to go to the er atleasrt once a month for pain but because they
hav been tril and erroring and I now need to find a hospitol or
clinic in new york who can figure all whats wrong they think sd and
other nerve damage(if anyone knows any Ill be very grateful) but  as
you all no you have good and bad days butI always care for my son
whether Im in pain or not and on te absolute unbearable days we stay
at my moms and she watches him or if I need or want she also can
take meto my appointments or hospitol and my aunt or grandma can
watch my baby boy... but the father says no judge will give me
custody becuse of the rsd. Is this true? I have plenty of help and
good and bad days and getting in for treatments and have always
taken care of him can the father really take custody from me? Im
scared do disabled parents have rights to keep custody ? Can the
other parent who is not disabled but had a past dwi, 2 bar fights a
drinking and gambling problem, a dropped harassment charge that got
dropped and now the bruises on me realy win custody just because im
hurt? Whats my disability parental rights, I live in ny any help or
even where to ask would be greatly appreciated. Thanks






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[Non-text portions of this message have been removed]

Diane you have alot of legal issues there and i think what would be in your best
interest because of the differences in states would be to contact an attorney. 
There are attorneys out there that do take payments.  I really do not think you
have much to worry about tho. If this is going to lead to a divorce you are
going to need an attorney anyway  i am sorry that you have to go thru this after
getting this horrible monster.

   Jan

"Diane .H." <rsdpain05@...> wrote:
   I havent wrote in a while I have been having bad days and I just
left my sons father. I had been seeking abuse counseling for a
couple of months now because he wasent great before the disease but
became terrible after. In tje beginning he was okay but within 3
months of my fall he began getting meaner and meaner, stole my meds
took what very little money I had, would refuse to push me in my
wheelchair ever and dint want to be seen with me unless I had a good
day and walked, wheelhairs embarased him, well he finally hit me for
the first time yesterday. I made a police repot and have been seeing
a domestic abuse hotline for months so I packed all my sons and I
clothes all his toys my family and I purchased, my dresser , one of
the babies bed the one given to me not the one he bought , my 2
small tvs and a thrift store vcr  and a playstation and left him
with the babies bed he brought, the babies and his dresser and both
our beds the one we have packed, the BIG tv, china closent with all
my fine dishware, all photos except the ones of just me and the baby
the dishes couch entertainment center, nicknakes all the nice art
work, my 2 antique endtable and chip in dale mirror(these 2 id like
back) the bar, basically almost everything and now he says he is
going to tell them I took more than my share.


The main reason Im writing is because I have RSD pretty bad and
have to go to the er atleasrt once a month for pain but because they
hav been tril and erroring and I now need to find a hospitol or
clinic in new york who can figure all whats wrong they think sd and
other nerve damage(if anyone knows any Ill be very grateful) but  as
you all no you have good and bad days butI always care for my son
whether Im in pain or not and on te absolute unbearable days we stay
at my moms and she watches him or if I need or want she also can
take meto my appointments or hospitol and my aunt or grandma can
watch my baby boy... but the father says no judge will give me
custody becuse of the rsd. Is this true? I have plenty of help and
good and bad days and getting in for treatments and have always
taken care of him can the father really take custody from me? Im
scared do disabled parents have rights to keep custody ? Can the
other parent who is not disabled but had a past dwi, 2 bar fights a
drinking and gambling problem, a dropped harassment charge that got
dropped and now the bruises on me realy win custody just because im
hurt? Whats my disability parental rights, I live in ny any help or
even where to ask would be greatly appreciated. Thanks






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[Non-text portions of this message have been removed]

I havent wrote in a while I have been having bad days and I just
left my sons father. I had been seeking abuse counseling for a
couple of months now because he wasent great before the disease but
became terrible after. In tje beginning he was okay but within 3
months of my fall he began getting meaner and meaner, stole my meds
took what very little money I had, would refuse to push me in my
wheelchair ever and dint want to be seen with me unless I had a good
day and walked, wheelhairs embarased him, well he finally hit me for
the first time yesterday. I made a police repot and have been seeing
a domestic abuse hotline for months so I packed all my sons and I
clothes all his toys my family and I purchased, my dresser , one of
the babies bed the one given to me not the one he bought , my 2
small tvs and a thrift store vcr  and a playstation and left him
with the babies bed he brought, the babies and his dresser and both
our beds the one we have packed, the BIG tv, china closent with all
my fine dishware, all photos except the ones of just me and the baby
the dishes couch entertainment center, nicknakes all the nice art
work, my 2 antique endtable and chip in dale mirror(these 2 id like
back) the bar, basically almost everything and now he says he is
going to tell them I took more than my share.


  The main reason Im writing is because I have RSD pretty bad and
have to go to the er atleasrt once a month for pain but because they
hav been tril and erroring and I now need to find a hospitol or
clinic in new york who can figure all whats wrong they think sd and
other nerve damage(if anyone knows any Ill be very grateful) but  as
you all no you have good and bad days butI always care for my son
whether Im in pain or not and on te absolute unbearable days we stay
at my moms and she watches him or if I need or want she also can
take meto my appointments or hospitol and my aunt or grandma can
watch my baby boy... but the father says no judge will give me
custody becuse of the rsd. Is this true? I have plenty of help and
good and bad days and getting in for treatments and have always
taken care of him can the father really take custody from me? Im
scared do disabled parents have rights to keep custody ? Can the
other parent who is not disabled but had a past dwi, 2 bar fights a
drinking and gambling problem, a dropped harassment charge that got
dropped and now the bruises on me realy win custody just because im
hurt? Whats my disability parental rights, I live in ny any help or
even where to ask would be greatly appreciated. Thanks

well ive been busy the last few weeks moving into my brand new house...i never
thought i would get such a good deal until i found
http://www.getitherenow.info/wcts now theres no looking back!

Hi Jenny,
      Thanks for writing.  I'm sorry to hear your plagued with this as well.  It
sure
   makes life difficult to say the least.  So very much has changed.  I'm on the
new
   drug called Lyrica along with Daypro and Percocet for the most difficult days.
      I have to see a neurologist on the 23d.  My doctor is trying to get the
swelling
   down so he can send me to therapy so he keeps wrapping it.  I told him he'd
   better find a speedy therapist because as soon as you unwrap it, it swells
again
   in about a half hour.
      I'm sorry to hear depression has gotten bad for you.  I go through down
periods
   too but try to not let it get the best of me.  The important thing is to
fight.  There is
   a reason for all things.  As bad as this is I have also learned alot like the
handicapped
   really don't have it all that easy.  I've run into alot of stores that do not
have
   electronic doors and elevators that don't pause long enough for a wheelchair,
and
   curbs that are way too high with no handicap ramps just to name a few.  I've
learned
   alot about the kindness of people. I've had so many people assist me or ask if
they
   could help.  It makes you appreciate what you had that you took for granted
and
   never will again should the RSD go into remission.
      When I get depressed I try to find good in something around me, just the
things
   I can enjoy even if it's the birds singing and if it's a real low I think that
it could be
   worse, it's not cancer, it's not going to kill me.  My brother has cancer and
he is
   only 53, I think of him.
       I too am divorced, don't let things you can't control get to you.  You
have enough
   to concern yourself with, with your health.  Now is the time to focus on you
and
   keep on going as difficult as it may be.  It's when we stop that the RSD fully
has
   it's way, so keep moving even if it's at a snails pace like myself, I still
move and
   those around me who are able to rush....... well they can just go around me.
It's
   funny, they look at me and I think hopefully they are thinking of how
fortunate
   they are.  They have no idea how quickly that can change.   You and I and so
   many others have a purpose if only to remind others.
      Good luck to you , and write any time.  Friends are the best support.
   Especially those who truely know what it is and what it's like to live with.

   Juniee

pruittjl <pruittjl@...> wrote:
   Just wanted ti introduce myself.  My name is Jenny, I've had RSD for
almost years.  Started in my left arm and is now spreading all over my
body.  My depression is getting worse.  I'm on Effexor for that. I
have ordered a cane to help me get around.  Just looking to make
friends that understand.  People don't understand what we go through.
I feel like all I do is fight lately, a divorce, insurance and the RSD.

Thanks,
Jenny






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[Non-text portions of this message have been removed]

Just wanted ti introduce myself.  My name is Jenny, I've had RSD for
almost years.  Started in my left arm and is now spreading all over my
body.  My depression is getting worse.  I'm on Effexor for that. I
have ordered a cane to help me get around.  Just looking to make
friends that understand.  People don't understand what we go through.
I feel like all I do is fight lately, a divorce, insurance and the RSD.

Thanks,
Jenny

There is a site to help. type in * invisable disabilities * This site
gives insite to.. you look good but feel like crap . How to get people
to get it. The For Grace site also has a prescripted letter to your
loved ones to help them "get it". Dont get discouraged. They cant help
it. If you think about it.. Do you worry about things that are not in
your face? I know it is soooo hard. Sometimes you just need to be with
people who do get it. Dont give up!

Hello,

   I have had this for almost 2 years now.  I'm sorry that you have RSD, but I'm
glad that you found this group.  God Bless you.  Sandy

njuniee <njuniee@...> wrote:
   Hi Everyone,
   Sad to say, I'm joining the club.  Recently diagnosed with RSD
and looking for friends to talk to.  I think I'm beginning to wear
out the ears of co-workers and family.
   I think sometimes they think I should put my mind somewhere else
and not think so much on it but it's so hard to explain to anyone
who doesn't have it that it's impossible to "not" think about it, it
doesn't let you think outside of it.  It's hard not to think of how
much it changes your life and what it is capable of beyond of where
your at.
   On minute I'm walking and going about life and the next I can
barely walk on crutches and rely on a wheelchair.  So many people
have never even heard of it and can't understand the concept of "no
cure."  On top of that, I don't know about all of you but I am so
tired of people asking me if I'm feeling better...  They don't
really want to hear me talk of it anymore yet they ask a question
that requires an honest answer and when I say "no" they're at a
loss.  If I say "I'm doing ok" then they get all excited and say "
Oh !! Is your leg getting better ?!"  What part of "no cure" do they
not understand.
   I guess I'm just frustrated as I have had it three months and it's
all still so new and so many adjustments and phases I'm still going
through.  I don't mean to come here to air out on you.  Lord knows
your the last folks that should have to listen to me as I know how
each of you suffer as I do.  I guess that is why I'm saying all this
because you "do" understand. Unfortunatley for all of you...
you "do" understand.
   I hope one day they find the answer to it for all our sake.  I
will get through I know I will as I'm strong in spirit and will but
sometimes like today, I guess I'm tired of being strong and that's
ok too.  We all deserve those days.

God Bless All Who Have to Enter Here,
Juniee







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[Non-text portions of this message have been removed]

Hi Everyone,
   Sad to say, I'm joining the club.  Recently diagnosed with RSD
and looking for friends to talk to.  I think I'm beginning to wear
out the ears of co-workers and family.
   I think sometimes they think I should put my mind somewhere else
and not think so much on it but it's so hard to explain to anyone
who doesn't have it that it's impossible to "not" think about it, it
doesn't let you think outside of it.  It's hard not to think of how
much it changes your life and what it is capable of beyond of where
your at.
   On minute I'm walking and going about life and the next I can
barely walk on crutches and rely on a wheelchair.  So many people
have never even heard of it and can't understand the concept of "no
cure."  On top of that, I don't know about all of you but I am so
tired of people asking me if I'm feeling better...  They don't
really want to hear me talk of it anymore yet they ask a question
that requires an honest answer and when I say "no" they're at a
loss.  If I say "I'm doing ok" then they get all excited and say "
Oh !! Is your leg getting better ?!"  What part of "no cure" do they
not understand.
   I guess I'm just frustrated as I have had it three months and it's
all still so new and so many adjustments and phases I'm still going
through.  I don't mean to come here to air out on you.  Lord knows
your the last folks that should have to listen to me as I know how
each of you suffer as I do.  I guess that is why I'm saying all this
because you "do" understand. Unfortunatley for all of you...
you "do" understand.
   I hope one day they find the answer to it for all our sake.  I
will get through I know I will as I'm strong in spirit and will but
sometimes like today, I guess I'm tired of being strong and that's
ok too.  We all deserve those days.

God Bless All Who Have to Enter Here,
Juniee

Just jumped on board at this place http://www.alwaysopenforyou.info/pztn and
have to say its a riot. Lots of awesome things to do to do on      there. Check
it out.