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#28658 From: "jzanker" <jzanker@...>
Date: Sat Aug 1, 2009 1:02 pm
Subject: just wondering
jodith38
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just have been told I have a limpoma in my knee very big .does anyone else have this problem ? and if so  what was done for it? im kinda curious .my knee  at night aches so bad all the way to my foot.

#28657 From: echittick@...
Date: Sat Aug 1, 2009 12:21 am
Subject: Re: Remember When We All Got Tagged?
elaine.chittick
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I remember it will be interesting to see what happens. E


Jul 30, 2009 02:27:59 PM, Dercums_Disease@yahoogroups.com wrote:
 




 

ATTORNEY GENERAL CUOMO ANNOUNCES LEGAL ACTION AGAINST SOCIAL NETWORKING SITE THAT RAIDED EMAIL ADDRESS BOOKS, STOLE IDENTITIES, AND SPAMMED MILLIONS OF AMERICANS
Tagged.com Engaged in Deceptive Email Promotions, Identity Theft, and Invasion of Privacy

NEW YORK, NY (July 9, 2009) – Attorney General Andrew M. Cuomo today announced that he has served the social networking site Tagged.com ("Tagged") with formal notice that his office intends to sue the company for deceptive email marketing practices and invasion of privacy. According to Cuomo's notice of intent, Tagged devised an illegal plan to lure new members and artificially inflate traffic on its site. Consumers who visited Tagged were tricked into providing the company with access to their personal email contacts, which the company then used to send millions of promotional emails. Tagged disguised these solicitations to make them appear as if they were coming from a personal contact, when they were actually spam.

Between April and June this year, Tagged sent tens of millions of misleading emails to unsuspecting recipients stating that Tagged members had posted private photos online for their friends to view. In reality, no such photos existed and the email was not from their friends. When recipients of these fraudulent emails tried to access the photos, they were forced to become a new member of Tagged. The company would then illegally gain access to their personal email contacts to send more fraudulent invitations.

"This company stole the address books and identities of millions of people," said Attorney General Cuomo. "Consumers had their privacy invaded and were forced into the embarrassing position of having to apologize to all their email contacts for Tagged's unethical – and illegal – behavior. This very virulent form of spam is the online equivalent of breaking into a home, stealing address books, and sending phony mail to all of an individual's personal contacts. We would never accept this behavior in the real world, and we cannot accept it online."

Tagged made their invitational emails appear to have been sent directly from members' personal email accounts, instead of from Tagged.com. The emails falsely stated that "[name] sent you photos on Tagged." If a member had added a personal image to the website, Tagged also included that picture in these fraudulent email solicitations. Many consumers were unaware that Tagged accessed their email contact lists.

The Attorney General's lawsuit would seek to stop Tagged from engaging in these fraudulent practices and would seek fines from the company. Tagged temporarily suspended its email marketing campaign in June, in response to user complaints and criticism, but had already sent over 60 million of the deceptive emails to consumers worldwide.
The case is being handled by Chief of the Internet Bureau Justin Brookman, Assistant Attorney General Clark Russell, and Investigator Vanessa Ip, under the supervision of Deputy Attorney General for Economic Justice Michael Berlin

Attachment:

* Tagged Five Day Letter

For Adobe PDF files you can download Adobe Reader from Adobe Systems.



#28656 From: echittick@...
Date: Fri Jul 31, 2009 10:12 pm
Subject: Re: Re: Thats Insane!
elaine.chittick
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you can find it on American pain foundation they are good at getting signitures on line and bills passed for pain management the y just sent me link about healthcare reform about end of life discussion where it misrepresented go check it out.E


Jul 30, 2009 07:07:10 PM, Dercums_Disease@yahoogroups.com wrote:
 

Dear Pamela,
Please send link to the bill..
Suzi


From: Pamela Harrison <ozziespamela@...>
To: Dercums_Disease@yahoogroups.com
Sent: Thursday, July 30, 2009 7:51:40 PM
Subject: Re: [Dercums_Disease] Thats Insane!

 


Rodney wrote: We are all going to be old.  The way it is written right now you will be asked to die quietly!  No joke.  Today I saw something were you will haveto have goverment officials come to your house and counsel you about your childrens development.  This is absolutely against all we stand for.


My thoughts exactly, Rod. I downloaded a copy of that bill today and, from what I have managed to read so far, that is exactly what it says. (Pages 225-250, I think) No wonder they are trying to pass it before anyone has a chance to read it.
Pamela




#28655 From: "Calle_Kitten" <calle_kitten@...>
Date: Fri Jul 31, 2009 6:20 am
Subject: Re: Thats Insane!
calle_kitten
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I have great prescription coverage at this point, but we were put on notice this year that our seconday insurance is going to be making major changes to be able to afford providing benefits.  Every June/July I hold my breath to see what they are gonna change.
 
I am sorry your drug cost is so high.  Have you tried walmart or one of those pharmacys that advertise online for 4.00 a month prescriptions ?  Might be worth checking into.
Calle
 
 
 
 
----- Original Message -----
Sent: Thursday, July 30, 2009 3:58 AM
Subject: Re: [Dercums_Disease] Thats Insane!

 

Calle
 
That's insane!  I am worried to death about the health care reform.  My two medicines Lyrica and Oxycontin cost me $200.00 a month after Insurance.  If I did not have insurance my medications would cost $ 277.00 for Lyrica and $ 1405.00 for Oxycontin. That s $20184.00 a year with out insurance.  I think our health care system is fine, its our drug companies that need reform.  I pray if the government forces us into a public option they may not cover my medicines at all.  All I know is I would not want to live without some way of lowering the pain.  Think about it if the drug companies do not lower the cost of meds it will cost me $79,000.00 till I'm 70 and $666,072.00 without insurance. Thats insane.
 
R

--- On Thu, 7/30/09, Calle_Kitten <calle_kitten@yahoo.com> wrote:

From: Calle_Kitten <calle_kitten@yahoo.com>
Subject: [Dercums_Disease] MLD billing for 3 months - outrageous !
To: Dercums_Disease@yahoogroups.com
Date: Thursday, July 30, 2009, 12:39 AM

 
Hi ya all - I finally sat down and figured out how the billing went for my MLD treatment.  Mind you this is for treatment only, not the wraps or the garments.
 
The amount that the hospital billed was outrageous.  Medicare paid about 22 percent of the charges.  Our medical system is crazy !! Who could pay 32,000.00 for 3 months worth of MLD ??
 
One thing, my therapist did say that if someone came without insurance, since it is a Catholic run hospital, that they would work it out for them to be paid from a fund the hospital has.  Still, I thought $32,000.00 WAS OUTRAGEOUS !

Here is the breakdown.
 
I went every day in Feb, then 3 days a week up until April 24.  I don't know the total number of visits, I am too lazy to count them.
 
But here is how the billing and payment worked.
 
I have Medicare primary and United as secondary insurance.
 
St Josephs Hospital Billing ------------ --------- ------  32, 283.00
Medicare approved amount from above ------------ --    7,158.20
Medicare paid ------------ --------- --------- --------- ---   5,726.66 (80%)
Balance for United to pay was                                     1,431.54
 
I got a bill from the hospital for 600.00, saying it had been 45 days since they had billed my insurance and so I owed them $600.00
 
Upon doing research to try and figure this out, I realized that they have not billed my insurance company for the month of March.  Tomorrow I will call them and let them know they need to do so.  It is possible though, that they will not be paid as my insurance has a strict policy that everything must be billed within 90 days of service.  And .... the insurance cannot come after me if they bill late.
 
Dr. Karen wants me to get some more MLD at this point.  Much of the pain has come back..  Most of it in the knees and ankles.  Since I figured out that I am covered 100 per cent i will go ahead and make those appointments.
 
So ???? I just thought you all might find this interesting :)
 
Love Calle
 
 
 


#28654 From: "Calle_Kitten" <calle_kitten@...>
Date: Fri Jul 31, 2009 6:09 am
Subject: Re: Thats Insane!
calle_kitten
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Hi Suzann, it is scary.  We have pretty good prescription coverage.  My pain patches, 6 boxes every 3 months is 1000.00.  We only pay 10.00 of it.
 
I know what you mean about how much the illness takes away from other resources. :(
 
Big hugs.

Calle
----- Original Message -----
 
 
 
Sent: Thursday, July 30, 2009 5:53 AM
Subject: RE: [Dercums_Disease] Thats Insane!

 

It’s truly a frightening thought Rodney and Calle!  You are right Rodney to be worried about drug costs.  They are through the roof and no one seems to be doing anything to stop them from charging these outrageous prices.  I understand what Pam wrote the other day that the costs of a new drug are so high to offset the costs of the research that had to be done to come up with these drugs, but my goodness, does it really costs that much to research these things?  I’m in the same boat as many of you in that it’s my prescription costs that are causing my husband and I to constantly be broke!  I hate that my illness is taking so much away from my family and the household needs.  Quite often I go without one or two drugs at a time because the money just isn’t there to buy them at the time and that’s a shame too, because my health shouldn’t have to suffer so because of the high costs of these drugs.

All we can do is hope the government looks at the pharmaceutical companies as well Rodney.

Suzann A. Cheney

Administrative Secretary

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel:   (315) 268-6738

Fax:  (315) 268-7994

Web: http://www.clarkson.edu/admission/graduate

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Rodney Bingham
Sent: Thursday, July 30, 2009 6:59 AM
To: Dercums_Disease@yahoogroups.com
Subject: Re: [Dercums_Disease] Thats Insane!




Calle

That's insane!  I am worried to death about the health care reform.  My two medicines Lyrica and Oxycontin cost me $200.00 a month after Insurance.  If I did not have insurance my medications would cost $ 277.00 for Lyrica and $ 1405.00 for Oxycontin. That s $20184.00 a year with out insurance.  I think our health care system is fine, its our drug companies that need reform.  I pray if the government forces us into a public option they may not cover my medicines at all.  All I know is I would not want to live without some way of lowering the pain.  Think about it if the drug companies do not lower the cost of meds it will cost me $79,000.00 till I'm 70 and $666,072.00 without insurance. Thats insane.

R

--- On Thu, 7/30/09, Calle_Kitten <calle_kitten@yahoo.com> wrote:


From: Calle_Kitten <calle_kitten@yahoo.com>
Subject: [Dercums_Disease] MLD billing for 3 months - outrageous !
To: Dercums_Disease@yahoogroups.com
Date: Thursday, July 30, 2009, 12:39 AM

 

Hi ya all - I finally sat down and figured out how the billing went for my MLD treatment.  Mind you this is for treatment only, not the wraps or the garments.

The amount that the hospital billed was outrageous.  Medicare paid about 22 percent of the charges.  Our medical system is crazy !! Who could pay 32,000.00 for 3 months worth of MLD ??

One thing, my therapist did say that if someone came without insurance, since it is a Catholic run hospital, that they would work it out for them to be paid from a fund the hospital has.  Still, I thought $32,000.00 WAS OUTRAGEOUS !


Here is the breakdown.

I went every day in Feb, then 3 days a week up until April 24.  I don't know the total number of visits, I am too lazy to count them.

But here is how the billing and payment worked.

I have Medicare primary and United as secondary insurance.

St Josephs Hospital Billing ------------ --------- ------  32, 283.00

Medicare approved amount from above ------------ --    7,158.20

Medicare paid ------------ --------- --------- --------- ---   5,726.66 (80%)

Balance for United to pay was                                     1,431.54

I got a bill from the hospital for 600.00, saying it had been 45 days since they had billed my insurance and so I owed them $600.00

Upon doing research to try and figure this out, I realized that they have not billed my insurance company for the month of March.  Tomorrow I will call them and let them know they need to do so.  It is possible though, that they will not be paid as my insurance has a strict policy that everything must be billed within 90 days of service.  And .... the insurance cannot come after me if they bill late.

Dr. Karen wants me to get some more MLD at this point.  Much of the pain has come back..  Most of it in the knees and ankles.  Since I figured out that I am covered 100 per cent i will go ahead and make those appointments.

So ???? I just thought you all might find this interesting :)

Love Calle






#28653 From: "Calle_Kitten" <calle_kitten@...>
Date: Fri Jul 31, 2009 6:06 am
Subject: Re: Re: MLD billing for 3 months - outrageous !
calle_kitten
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YIKESSSSSSSSSSS Judi - It is totally amazing how much they get away with.
 
Hubby was saying today, isnt there a way to get something in writing so you wouldnt have to have the worry.  But even when I get written approval, there is always the statement that this does not guarentee payment.
 
I can't tell you how many hospital bills and Dr. bills I have had to fight about.  I think though, that a lot of people just pay them.  I always do research and most of the time I end up owing nothing or a much reduced amount.
 
This latest mess with my mld bill, they said I owed 600.00.  I logged onto both insurances, and could tell that they had missed billing the secondary for the month of march.  I called the hospital, they said that they had talked to the insurance and that the insurance co had the bill and just werent paying it.  So I then called the secondary and they said they had never seen a bill, and that the hospital had not ever called them about it.  They just plain lied about it.
 
Also, if they do not submit the bill within 90 days, the insurance does not have to pay, nor do I. 
 
However, today, United, the secondary was SOOOOOOO helpful.  They called the hospital and had them fax the bill over, so they could take care of it !!  Glory beeee !!
 
I am so sorry Judi you guys had to pay so much :(   It is amazing how much Medicare does NOT PAY !!
 
Hugs
Calle
 
 
 
 
----- Original Message -----
From: Judi
Sent: Thursday, July 30, 2009 8:26 AM
Subject: [Dercums_Disease] Re: MLD billing for 3 months - outrageous !

 

Calle,

We encountered this same type of thing when Ron had his stim unit replaced last summer. The hospital billed Medicare $67,000 just for the unit itself (not counting surgery, doctor, hospital room, etc.) Medicare only approved half, and United denied the claim saying it was "not medically necessary!" The doctor wrote a letter to UHC detailing how it WAS necessary, and told us that hosptials usually do charge twice as much to insured patients to help pay for those who do not have insurance. We ended up having to pay $5000 out of pocket, and believe me, our pocket is not that deep!

I'm glad you have good coverage, as I know it is helping you.

Judi

--- In Dercums_Disease@yahoogroups.com, "Calle_Kitten" <calle_kitten@...> wrote:
>
> Hi ya all - I finally sat down and figured out how the billing went for my MLD treatment. Mind you this is for treatment only, not the wraps or the garments.
>
> The amount that the hospital billed was outrageous. Medicare paid about 22 percent of the charges. Our medical system is crazy !! Who could pay 32,000.00 for 3 months worth of MLD ??
>
> One thing, my therapist did say that if someone came without insurance, since it is a Catholic run hospital, that they would work it out for them to be paid from a fund the hospital has. Still, I thought $32,000.00 WAS OUTRAGEOUS !
>
> Here is the breakdown.
>
> I went every day in Feb, then 3 days a week up until April 24. I don't know the total number of visits, I am too lazy to count them.
>
> But here is how the billing and payment worked.
>
> I have Medicare primary and United as secondary insurance.
>
> St Josephs Hospital Billing --------------------------- 32, 283.00
> Medicare approved amount from above -------------- 7,158.20
> Medicare paid ------------------------------------------ 5,726.66 (80%)
> Balance for United to pay was 1,431.54
>
> I got a bill from the hospital for 600.00, saying it had been 45 days since they had billed my insurance and so I owed them $600.00
>
> Upon doing research to try and figure this out, I realized that they have not billed my insurance company for the month of March. Tomorrow I will call them and let them know they need to do so. It is possible though, that they will not be paid as my insurance has a strict policy that everything must be billed within 90 days of service. And .... the insurance cannot come after me if they bill late.
>
> Dr. Karen wants me to get some more MLD at this point. Much of the pain has come back. Most of it in the knees and ankles. Since I figured out that I am covered 100 per cent i will go ahead and make those appointments.
>
> So ???? I just thought you all might find this interesting :)
>
> Love Calle
>


#28652 From: "kkbr50" <kkozie@...>
Date: Fri Jul 31, 2009 12:44 am
Subject: Re: Thats Insane!-correction & attachment
kkbr50
Offline Offline
Send Email Send Email
 
I'm sorry if I'm off track here.  I deleted many of the earlier emails without
reading them thoroughly but just to add another perspective to end of life
counseling for seniors...  I don't think the health care bill is trying to limit
care for older or chronically ill Americans (see below from page 430 of the
document).  "The level of treatment indicated under subparagraph (A)(ii) may
range from an indication for full treatment to an indication to limit some or
all or specified interventions."  This is according to the amount of treatment
the patient indicates as their wishes.  I think what the bill is trying to do is
get people to indicate what they want before they become critically ill or
suffer from dementia and cannot speak for themselves.  There is a significant
amount of money spent at the end of life sometimes validly and sometimes not.  I
listened to an NPR show today in which the doctor indicated that all too often a
family brings in a dying patient to the emergency room.  That patient has had
multiple health problems for a long time but there has never been any discussion
of their wishes at the end of life.  Do they want to be kept alive even if their
brain is no longer functioning?  If there is no hope of recovery?  If they are
in significant pain?  They may decide the answer to all of those questions is
yes.  The key is that they discuss their wishes before they are no longer able
to talk about these decisions.  And once they make these end of life decisions,
that they are respected by health care professionals and family members.  So if
I do not want to be resuscitated if I am dying of cancer and am in significant
pain, my family will not have to find my living will or make that difficult and
emotional decision for me.  It will be a part of my medical record. I guess I
personally think that is a good thing.  It also allows patients an opportunity
to talk about these important decisions with their doctor when sometimes it is
just too difficult to discuss (for some people) with family members.  Just some
thoughts...  Karin

--- In Dercums_Disease@yahoogroups.com, Pamela Harrison <ozziespamela@...>
wrote:
>
>
>
>
>
>
> ________________________________
> Oops! that should have been pages 425-450. Sorry.. anyway, I have attached the
bill if anyone wants to read it.
> Pamela
>
>
>
> My thoughts exactly, Rod. I downloaded a copy of that bill today and, from
what I have managed to read so far, that is exactly what it says. (Pages
225-250, I think) No wonder they are trying to pass it before anyone has a
chance to read it.
> Pamela
>
>
> ________________________________
>

#28651 From: Pamela Harrison <ozziespamela@...>
Date: Fri Jul 31, 2009 12:07 am
Subject: Re: Thats Insane!-correction & attachment
ozziespamela
Offline Offline
Send Email Send Email
 



Oops! that should have been pages 425-450. Sorry.. anyway, I have attached the bill if anyone wants to read it.
Pamela
 

My thoughts exactly, Rod. I downloaded a copy of that bill today and, from what I have managed to read so far, that is exactly what it says. (Pages 225-250, I think) No wonder they are trying to pass it before anyone has a chance to read it.
Pamela




1 of 1 File(s)


#28650 From: Suzi More <suzimore92@...>
Date: Fri Jul 31, 2009 12:06 am
Subject: Re: Thats Insane!
suzisblue
Offline Offline
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Dear Pamela,
Please send link to the bill..
Suzi


From: Pamela Harrison <ozziespamela@...>
To: Dercums_Disease@yahoogroups.com
Sent: Thursday, July 30, 2009 7:51:40 PM
Subject: Re: [Dercums_Disease] Thats Insane!

 


Rodney wrote: We are all going to be old.  The way it is written right now you will be asked to die quietly!  No joke.  Today I saw something were you will haveto have goverment officials come to your house and counsel you about your childrens development.  This is absolutely against all we stand for.
 

My thoughts exactly, Rod. I downloaded a copy of that bill today and, from what I have managed to read so far, that is exactly what it says. (Pages 225-250, I think) No wonder they are trying to pass it before anyone has a chance to read it.
Pamela




#28649 From: Pamela Harrison <ozziespamela@...>
Date: Thu Jul 30, 2009 11:51 pm
Subject: Re: Thats Insane!
ozziespamela
Offline Offline
Send Email Send Email
 

Rodney wrote: We are all going to be old.  The way it is written right now you will be asked to die quietly!  No joke.  Today I saw something were you will haveto have goverment officials come to your house and counsel you about your childrens development.  This is absolutely against all we stand for.
 

My thoughts exactly, Rod. I downloaded a copy of that bill today and, from what I have managed to read so far, that is exactly what it says. (Pages 225-250, I think) No wonder they are trying to pass it before anyone has a chance to read it.
Pamela



#28648 From: Rodney Bingham <nomadeclipse@...>
Date: Thu Jul 30, 2009 9:09 pm
Subject: Re: Thats Insane!
nomadeclipse
Online Now Online Now
Send Email Send Email
 
Pamela
 
We are all going to be old.  The way it is written right now you will be asked to die quietly!  No joke.  Today I saw something were you will haveto have goverment officials come to your house and counsel you about your childrens development.  This is absolutely against all we stand for.
 
R

--- On Thu, 7/30/09, Pamela Harrison <ozziespamela@...> wrote:

From: Pamela Harrison <ozziespamela@...>
Subject: Re: [Dercums_Disease] Thats Insane!
To: Dercums_Disease@yahoogroups.com
Date: Thursday, July 30, 2009, 12:38 PM

 
HI Rodney,
I'm terrified too. What scares me most is the fact that the bill includes the expansion of hospice programs and mandates end of life counseling for all seniors every five years. I worry that those of us who are either old or have  chronic (ie expensive) illnesses will be denied the proper treatments.  You're right too- If they pay for prescriptions the way Medicare does, we're all in trouble!
Hugs and spoons,
Pamela



From: Rodney Bingham <nomadeclipse@ yahoo.com>
To: Dercums_Disease@ yahoogroups. com
Sent: Thursday, July 30, 2009 5:58:38 AM
Subject: Re: [Dercums_Disease] Thats Insane!

 
Calle
 
That's insane!  I am worried to death about the health care reform.  My two medicines Lyrica and Oxycontin cost me $200.00 a month after Insurance.  If I did not have insurance my medications would cost $ 277.00 for Lyrica and $ 1405.00 for Oxycontin. That s $20184.00 a year with out insurance.  I think our health care system is fine, its our drug companies that need reform.  I pray if the government forces us into a public option they may not cover my medicines at all.  All I know is I would not want to live without some way of lowering the pain.  Think about it if the drug companies do not lower the cost of meds it will cost me $79,000.00 till I'm 70 and $666,072.00 without insurance. Thats insane.
 
R

---



#28647 From: Pamela Harrison <ozziespamela@...>
Date: Thu Jul 30, 2009 8:40 pm
Subject: Re: Re: MLD billing for 3 months - outrageous !
ozziespamela
Offline Offline
Send Email Send Email
 
Wow Judi,
That is awful. You'd think they would discount those things when your insurance company does that. Did United ever pay any of it?
Hugs and spoons,
Pamela


From: Judi <nonny46@...>
To: Dercums_Disease@yahoogroups.com
Sent: Thursday, July 30, 2009 10:26:35 AM
Subject: [Dercums_Disease] Re: MLD billing for 3 months - outrageous !

 

Calle,

We encountered this same type of thing when Ron had his stim unit replaced last summer. The hospital billed Medicare $67,000 just for the unit itself (not counting surgery, doctor, hospital room, etc.) Medicare only approved half, and United denied the claim saying it was "not medically necessary!" The doctor wrote a letter to UHC detailing how it WAS necessary, and told us that hosptials usually do charge twice as much to insured patients to help pay for those who do not have insurance. We ended up having to pay $5000 out of pocket, and believe me, our pocket is not that deep!

I'm glad you have good coverage, as I know it is helping you.

Judi

-



#28646 From: Pamela Harrison <ozziespamela@...>
Date: Thu Jul 30, 2009 7:27 pm
Subject: Remember When We All Got Tagged?
ozziespamela
Offline Offline
Send Email Send Email
 



 

ATTORNEY GENERAL CUOMO ANNOUNCES LEGAL ACTION AGAINST SOCIAL NETWORKING SITE THAT RAIDED EMAIL ADDRESS BOOKS, STOLE IDENTITIES, AND SPAMMED MILLIONS OF AMERICANS
Tagged.com Engaged in Deceptive Email Promotions, Identity Theft, and Invasion of Privacy

NEW YORK, NY (July 9, 2009) – Attorney General Andrew M. Cuomo today announced that he has served the social networking site Tagged.com ("Tagged") with formal notice that his office intends to sue the company for deceptive email marketing practices and invasion of privacy. According to Cuomo's notice of intent, Tagged devised an illegal plan to lure new members and artificially inflate traffic on its site. Consumers who visited Tagged were tricked into providing the company with access to their personal email contacts, which the company then used to send millions of promotional emails. Tagged disguised these solicitations to make them appear as if they were coming from a personal contact, when they were actually spam.

Between April and June this year, Tagged sent tens of millions of misleading emails to unsuspecting recipients stating that Tagged members had posted private photos online for their friends to view. In reality, no such photos existed and the email was not from their friends. When recipients of these fraudulent emails tried to access the photos, they were forced to become a new member of Tagged. The company would then illegally gain access to their personal email contacts to send more fraudulent invitations.

"This company stole the address books and identities of millions of people," said Attorney General Cuomo. "Consumers had their privacy invaded and were forced into the embarrassing position of having to apologize to all their email contacts for Tagged's unethical – and illegal – behavior. This very virulent form of spam is the online equivalent of breaking into a home, stealing address books, and sending phony mail to all of an individual's personal contacts. We would never accept this behavior in the real world, and we cannot accept it online."

Tagged made their invitational emails appear to have been sent directly from members' personal email accounts, instead of from Tagged.com. The emails falsely stated that "[name] sent you photos on Tagged." If a member had added a personal image to the website, Tagged also included that picture in these fraudulent email solicitations. Many consumers were unaware that Tagged accessed their email contact lists.

The Attorney General's lawsuit would seek to stop Tagged from engaging in these fraudulent practices and would seek fines from the company. Tagged temporarily suspended its email marketing campaign in June, in response to user complaints and criticism, but had already sent over 60 million of the deceptive emails to consumers worldwide.
The case is being handled by Chief of the Internet Bureau Justin Brookman, Assistant Attorney General Clark Russell, and Investigator Vanessa Ip, under the supervision of Deputy Attorney General for Economic Justice Michael Berlin

Attachment:

* Tagged Five Day Letter

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#28645 From: Pamela Harrison <ozziespamela@...>
Date: Thu Jul 30, 2009 4:38 pm
Subject: Re: Thats Insane!
ozziespamela
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HI Rodney,
I'm terrified too. What scares me most is the fact that the bill includes the expansion of hospice programs and mandates end of life counseling for all seniors every five years. I worry that those of us who are either old or have  chronic (ie expensive) illnesses will be denied the proper treatments.  You're right too- If they pay for prescriptions the way Medicare does, we're all in trouble!
Hugs and spoons,
Pamela



From: Rodney Bingham <nomadeclipse@...>
To: Dercums_Disease@yahoogroups.com
Sent: Thursday, July 30, 2009 5:58:38 AM
Subject: Re: [Dercums_Disease] Thats Insane!

 

Calle
 
That's insane!  I am worried to death about the health care reform.  My two medicines Lyrica and Oxycontin cost me $200.00 a month after Insurance.  If I did not have insurance my medications would cost $ 277.00 for Lyrica and $ 1405.00 for Oxycontin. That s $20184.00 a year with out insurance.  I think our health care system is fine, its our drug companies that need reform.  I pray if the government forces us into a public option they may not cover my medicines at all.  All I know is I would not want to live without some way of lowering the pain.  Think about it if the drug companies do not lower the cost of meds it will cost me $79,000.00 till I'm 70 and $666,072.00 without insurance. Thats insane.
 
R

---



#28644 From: "Suzann Cheney" <scheney@...>
Date: Thu Jul 30, 2009 3:46 pm
Subject: RE: Re: MLD billing for 3 months - outrageous !
suzanncheney
Offline Offline
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That's ridiculous Judi!  I wouldn't have had that kind of money out of
pocket either.  I'm glad you and Ron did as he obviously needed the
machine!

Take care - good you see you online!

Suzann A. Cheney
Administrative Secretary
Graduate School/Government Relations/Provost Office
Clarkson University
PO Box 5625
Potsdam, NY 13699-5625
Tel:   (315) 268-6738
Fax:  (315) 268-7994
Web: http://www.clarkson.edu/admission/graduate
-----Original Message-----
From: Dercums_Disease@yahoogroups.com
[mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Judi
Sent: Thursday, July 30, 2009 11:27 AM
To: Dercums_Disease@yahoogroups.com
Subject: [Dercums_Disease] Re: MLD billing for 3 months - outrageous !

Calle,

We encountered this same type of thing when Ron had his stim unit
replaced last summer.  The hospital billed Medicare $67,000 just for the
unit itself (not counting surgery, doctor, hospital room, etc.)
Medicare only approved half, and United denied the claim saying it was
"not medically necessary!"  The doctor wrote a letter to UHC detailing
how it WAS necessary, and told us that hosptials usually do charge twice
as much to insured patients to help pay for those who do not have
insurance.  We ended up having to pay $5000 out of pocket, and believe
me, our pocket is not that deep!

I'm glad you have good coverage, as I know it is helping you.

Judi

--- In Dercums_Disease@yahoogroups.com, "Calle_Kitten"
<calle_kitten@...> wrote:
>
> Hi ya all - I finally sat down and figured out how the billing went
for my MLD treatment.  Mind you this is for treatment only, not the
wraps or the garments.
>
> The amount that the hospital billed was outrageous.  Medicare paid
about 22 percent of the charges.  Our medical system is crazy !! Who
could pay 32,000.00 for 3 months worth of MLD ??
>
> One thing, my therapist did say that if someone came without
insurance, since it is a Catholic run hospital, that they would work it
out for them to be paid from a fund the hospital has.  Still, I thought
$32,000.00 WAS OUTRAGEOUS !
>
> Here is the breakdown.
>
> I went every day in Feb, then 3 days a week up until April 24.  I
don't know the total number of visits, I am too lazy to count them.
>
> But here is how the billing and payment worked.
>
> I have Medicare primary and United as secondary insurance.
>
> St Josephs Hospital Billing ---------------------------  32, 283.00
> Medicare approved amount from above --------------    7,158.20
> Medicare paid ------------------------------------------   5,726.66
(80%)
> Balance for United to pay was
1,431.54
>
> I got a bill from the hospital for 600.00, saying it had been 45 days
since they had billed my insurance and so I owed them $600.00
>
> Upon doing research to try and figure this out, I realized that they
have not billed my insurance company for the month of March.  Tomorrow I
will call them and let them know they need to do so.  It is possible
though, that they will not be paid as my insurance has a strict policy
that everything must be billed within 90 days of service.  And .... the
insurance cannot come after me if they bill late.
>
> Dr. Karen wants me to get some more MLD at this point.  Much of the
pain has come back.  Most of it in the knees and ankles.  Since I
figured out that I am covered 100 per cent i will go ahead and make
those appointments.
>
> So ???? I just thought you all might find this interesting :)
>
> Love Calle
>




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

Yahoo! Groups Links

#28643 From: "Judi" <nonny46@...>
Date: Thu Jul 30, 2009 3:26 pm
Subject: Re: MLD billing for 3 months - outrageous !
nonny46
Offline Offline
Send Email Send Email
 
Calle,

We encountered this same type of thing when Ron had his stim unit replaced last
summer.  The hospital billed Medicare $67,000 just for the unit itself (not
counting surgery, doctor, hospital room, etc.)  Medicare only approved half, and
United denied the claim saying it was "not medically necessary!"  The doctor
wrote a letter to UHC detailing how it WAS necessary, and told us that hosptials
usually do charge twice as much to insured patients to help pay for those who do
not have insurance.  We ended up having to pay $5000 out of pocket, and believe
me, our pocket is not that deep!

I'm glad you have good coverage, as I know it is helping you.

Judi

--- In Dercums_Disease@yahoogroups.com, "Calle_Kitten" <calle_kitten@...> wrote:
>
> Hi ya all - I finally sat down and figured out how the billing went for my MLD
treatment.  Mind you this is for treatment only, not the wraps or the garments.
>
> The amount that the hospital billed was outrageous.  Medicare paid about 22
percent of the charges.  Our medical system is crazy !! Who could pay 32,000.00
for 3 months worth of MLD ??
>
> One thing, my therapist did say that if someone came without insurance, since
it is a Catholic run hospital, that they would work it out for them to be paid
from a fund the hospital has.  Still, I thought $32,000.00 WAS OUTRAGEOUS !
>
> Here is the breakdown.
>
> I went every day in Feb, then 3 days a week up until April 24.  I don't know
the total number of visits, I am too lazy to count them.
>
> But here is how the billing and payment worked.
>
> I have Medicare primary and United as secondary insurance.
>
> St Josephs Hospital Billing ---------------------------  32, 283.00
> Medicare approved amount from above --------------    7,158.20
> Medicare paid ------------------------------------------   5,726.66 (80%)
> Balance for United to pay was                                     1,431.54
>
> I got a bill from the hospital for 600.00, saying it had been 45 days since
they had billed my insurance and so I owed them $600.00
>
> Upon doing research to try and figure this out, I realized that they have not
billed my insurance company for the month of March.  Tomorrow I will call them
and let them know they need to do so.  It is possible though, that they will not
be paid as my insurance has a strict policy that everything must be billed
within 90 days of service.  And .... the insurance cannot come after me if they
bill late.
>
> Dr. Karen wants me to get some more MLD at this point.  Much of the pain has
come back.  Most of it in the knees and ankles.  Since I figured out that I am
covered 100 per cent i will go ahead and make those appointments.
>
> So ???? I just thought you all might find this interesting :)
>
> Love Calle
>

#28642 From: "Suzann Cheney" <scheney@...>
Date: Thu Jul 30, 2009 12:53 pm
Subject: RE: Thats Insane!
suzanncheney
Offline Offline
Send Email Send Email
 

It’s truly a frightening thought Rodney and Calle!  You are right Rodney to be worried about drug costs.  They are through the roof and no one seems to be doing anything to stop them from charging these outrageous prices.  I understand what Pam wrote the other day that the costs of a new drug are so high to offset the costs of the research that had to be done to come up with these drugs, but my goodness, does it really costs that much to research these things?  I’m in the same boat as many of you in that it’s my prescription costs that are causing my husband and I to constantly be broke!  I hate that my illness is taking so much away from my family and the household needs.  Quite often I go without one or two drugs at a time because the money just isn’t there to buy them at the time and that’s a shame too, because my health shouldn’t have to suffer so because of the high costs of these drugs.

 

All we can do is hope the government looks at the pharmaceutical companies as well Rodney.

 

Suzann A. Cheney

Administrative Secretary

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel:   (315) 268-6738

Fax:  (315) 268-7994

Web: http://www.clarkson.edu/admission/graduate

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Rodney Bingham
Sent: Thursday, July 30, 2009 6:59 AM
To: Dercums_Disease@yahoogroups.com
Subject: Re: [Dercums_Disease] Thats Insane!

 




Calle

 

That's insane!  I am worried to death about the health care reform.  My two medicines Lyrica and Oxycontin cost me $200.00 a month after Insurance.  If I did not have insurance my medications would cost $ 277.00 for Lyrica and $ 1405.00 for Oxycontin. That s $20184.00 a year with out insurance.  I think our health care system is fine, its our drug companies that need reform.  I pray if the government forces us into a public option they may not cover my medicines at all.  All I know is I would not want to live without some way of lowering the pain.  Think about it if the drug companies do not lower the cost of meds it will cost me $79,000.00 till I'm 70 and $666,072.00 without insurance. Thats insane.

 

R

--- On Thu, 7/30/09, Calle_Kitten <calle_kitten@...> wrote:


From: Calle_Kitten <calle_kitten@...>
Subject: [Dercums_Disease] MLD billing for 3 months - outrageous !
To: Dercums_Disease@yahoogroups.com
Date: Thursday, July 30, 2009, 12:39 AM

 

Hi ya all - I finally sat down and figured out how the billing went for my MLD treatment.  Mind you this is for treatment only, not the wraps or the garments.

 

The amount that the hospital billed was outrageous.  Medicare paid about 22 percent of the charges.  Our medical system is crazy !! Who could pay 32,000.00 for 3 months worth of MLD ??

 

One thing, my therapist did say that if someone came without insurance, since it is a Catholic run hospital, that they would work it out for them to be paid from a fund the hospital has.  Still, I thought $32,000.00 WAS OUTRAGEOUS !


Here is the breakdown.

 

I went every day in Feb, then 3 days a week up until April 24.  I don't know the total number of visits, I am too lazy to count them.

 

But here is how the billing and payment worked.

 

I have Medicare primary and United as secondary insurance.

 

St Josephs Hospital Billing ------------ --------- ------  32, 283.00

Medicare approved amount from above ------------ --    7,158.20

Medicare paid ------------ --------- --------- --------- ---   5,726.66 (80%)

Balance for United to pay was                                     1,431.54

 

I got a bill from the hospital for 600.00, saying it had been 45 days since they had billed my insurance and so I owed them $600.00

 

Upon doing research to try and figure this out, I realized that they have not billed my insurance company for the month of March.  Tomorrow I will call them and let them know they need to do so.  It is possible though, that they will not be paid as my insurance has a strict policy that everything must be billed within 90 days of service.  And .... the insurance cannot come after me if they bill late.

 

Dr. Karen wants me to get some more MLD at this point.  Much of the pain has come back..  Most of it in the knees and ankles.  Since I figured out that I am covered 100 per cent i will go ahead and make those appointments.

 

So ???? I just thought you all might find this interesting :)

 

Love Calle

 

 

 






#28641 From: Rodney Bingham <nomadeclipse@...>
Date: Thu Jul 30, 2009 10:58 am
Subject: Re: Thats Insane!
nomadeclipse
Online Now Online Now
Send Email Send Email
 
Calle
 
That's insane!  I am worried to death about the health care reform.  My two medicines Lyrica and Oxycontin cost me $200.00 a month after Insurance.  If I did not have insurance my medications would cost $ 277.00 for Lyrica and $ 1405.00 for Oxycontin. That s $20184.00 a year with out insurance.  I think our health care system is fine, its our drug companies that need reform.  I pray if the government forces us into a public option they may not cover my medicines at all.  All I know is I would not want to live without some way of lowering the pain.  Think about it if the drug companies do not lower the cost of meds it will cost me $79,000.00 till I'm 70 and $666,072.00 without insurance. Thats insane.
 
R

--- On Thu, 7/30/09, Calle_Kitten <calle_kitten@...> wrote:

From: Calle_Kitten <calle_kitten@...>
Subject: [Dercums_Disease] MLD billing for 3 months - outrageous !
To: Dercums_Disease@yahoogroups.com
Date: Thursday, July 30, 2009, 12:39 AM

 
Hi ya all - I finally sat down and figured out how the billing went for my MLD treatment.  Mind you this is for treatment only, not the wraps or the garments.
 
The amount that the hospital billed was outrageous.  Medicare paid about 22 percent of the charges.  Our medical system is crazy !! Who could pay 32,000.00 for 3 months worth of MLD ??
 
One thing, my therapist did say that if someone came without insurance, since it is a Catholic run hospital, that they would work it out for them to be paid from a fund the hospital has.  Still, I thought $32,000.00 WAS OUTRAGEOUS !

Here is the breakdown.
 
I went every day in Feb, then 3 days a week up until April 24.  I don't know the total number of visits, I am too lazy to count them.
 
But here is how the billing and payment worked.
 
I have Medicare primary and United as secondary insurance.
 
St Josephs Hospital Billing ------------ --------- ------  32, 283.00
Medicare approved amount from above ------------ --    7,158.20
Medicare paid ------------ --------- --------- --------- ---   5,726.66 (80%)
Balance for United to pay was                                     1,431.54
 
I got a bill from the hospital for 600.00, saying it had been 45 days since they had billed my insurance and so I owed them $600.00
 
Upon doing research to try and figure this out, I realized that they have not billed my insurance company for the month of March.  Tomorrow I will call them and let them know they need to do so.  It is possible though, that they will not be paid as my insurance has a strict policy that everything must be billed within 90 days of service.  And .... the insurance cannot come after me if they bill late.
 
Dr. Karen wants me to get some more MLD at this point.  Much of the pain has come back..  Most of it in the knees and ankles.  Since I figured out that I am covered 100 per cent i will go ahead and make those appointments.
 
So ???? I just thought you all might find this interesting :)
 
Love Calle
 
 
 


#28640 From: "Calle_Kitten" <calle_kitten@...>
Date: Thu Jul 30, 2009 4:39 am
Subject: MLD billing for 3 months - outrageous !
calle_kitten
Offline Offline
Send Email Send Email
 
Hi ya all - I finally sat down and figured out how the billing went for my MLD treatment.  Mind you this is for treatment only, not the wraps or the garments.
 
The amount that the hospital billed was outrageous.  Medicare paid about 22 percent of the charges.  Our medical system is crazy !! Who could pay 32,000.00 for 3 months worth of MLD ??
 
One thing, my therapist did say that if someone came without insurance, since it is a Catholic run hospital, that they would work it out for them to be paid from a fund the hospital has.  Still, I thought $32,000.00 WAS OUTRAGEOUS !

Here is the breakdown.
 
I went every day in Feb, then 3 days a week up until April 24.  I don't know the total number of visits, I am too lazy to count them.
 
But here is how the billing and payment worked.
 
I have Medicare primary and United as secondary insurance.
 
St Josephs Hospital Billing ---------------------------  32, 283.00
Medicare approved amount from above --------------    7,158.20
Medicare paid ------------------------------------------   5,726.66 (80%)
Balance for United to pay was                                     1,431.54
 
I got a bill from the hospital for 600.00, saying it had been 45 days since they had billed my insurance and so I owed them $600.00
 
Upon doing research to try and figure this out, I realized that they have not billed my insurance company for the month of March.  Tomorrow I will call them and let them know they need to do so.  It is possible though, that they will not be paid as my insurance has a strict policy that everything must be billed within 90 days of service.  And .... the insurance cannot come after me if they bill late.
 
Dr. Karen wants me to get some more MLD at this point.  Much of the pain has come back.  Most of it in the knees and ankles.  Since I figured out that I am covered 100 per cent i will go ahead and make those appointments.
 
So ???? I just thought you all might find this interesting :)
 
Love Calle
 
 
 

#28639 From: Pamela Harrison <ozziespamela@...>
Date: Wed Jul 29, 2009 4:05 pm
Subject: Re: Spring all year round-OT
ozziespamela
Offline Offline
Send Email Send Email
 

 

"Really? I would have thought it gets hot there... Very interesting. ..but a long long way away."



Really! I am stuck here in Missouri, with one of the worst climates around, but San Diego is famous for its weather. It is warm in the winter and very mild in the summer too. I wish I could afford to live  there. I could even have Dr Herbst for a doctor all the time!
Hugs and spoons,
Pamela





#28638 From: Kendra55@...
Date: Wed Jul 29, 2009 12:53 am
Subject: Re: Spring all year round-OT
kendra55
Offline Offline
Send Email Send Email
 
Really? I would have thought it gets hot there... Very interesting...but a long long way away.

Sent from my Verizon Wireless BlackBerry


From: Pamela Harrison
Date: Tue, 28 Jul 2009 09:34:55 -0700 (PDT)
To: <Dercums_Disease@yahoogroups.com>
Subject: [Dercums_Disease] Spring all year round-OT

 

 Tara wrote:  Why can't there be a place where it's Spring all year round?

There is! It is called San Diego, California..



#28637 From: Kendra55@...
Date: Wed Jul 29, 2009 12:51 am
Subject: Re: Re: New Welcome File; Need some FAQ help
kendra55
Offline Offline
Send Email Send Email
 
Thanks Suzann - we hope so too!!

Sent from my Verizon Wireless BlackBerry


From: "Suzann Cheney"
Date: Tue, 28 Jul 2009 10:38:08 -0400
To: <Dercums_Disease@yahoogroups.com>
Subject: RE: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Yes Tara – that’s about 4 hours SW of me, but a very nice area to be in.  Depending on where in that area you are – snow can get quite heavy in that region as well.  I like the snow personally and all four seasons, but I don’t like the cold that is associated with the snow.

 

I wish you and your husband much luck in find a job that will suit you each and that you can make the move soon.

 

Suzann A. Cheney

Administrative Secretary

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel:   (315) 268-6738

Fax:  (315) 268-7994

Web: http://www.clarkson.edu/admission/graduate

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Kendra55@yahoo.com
Sent: Tuesday, July 28, 2009 10:33 AM
To: Dercums_Disease@yahoogroups.com
Subject: Re: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 



Hi Suzann
We're in Guilford, near Binghamton - so much further south than you. I'd be there tomorrow if I could, but this house needs a little more work to sell, and the market needs a little improving, so it may be a year or so, but that's the goal!! We are very happy there - in fact hubby has already started the job hunt, but of course nothing yet. Let's hope the economy turns around soon - too many dreams are on hold because of it!
Hugs
Tara

Sent from my Verizon Wireless BlackBerry


From: "Suzann Cheney"
Date: Tue, 28 Jul 2009 10:23:10 -0400
To: <Dercums_Disease@yahoogroups.com>
Subject: RE: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi Tara,

 

Where in Upstate is your other place may I ask.  I live n Potsdam, NY – up by the St. Lawrence River and 30 miles from the Canadian border.  Our winters can be pretty fierce here with subzero temps and plenty of snow! 

 

Good luck with your decision to sell, move and update the other place.  In the end – no matter where you live, there will be obstacles to your life with DD, so it matters most where you are the happiest, so if this place in upstate NY makes you happiest then I would say – get to moving!!!  LOL

 

Take care.

 

Suzann A. Cheney

Administrative Secretary

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel:   (315) 268-6738

Fax:  (315) 268-7994

Web: http://www.clarkson.edu/admission/graduate

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Kendra55@yahoo.com
Sent: Tuesday, July 28, 2009 10:14 AM
To: Dercums_Disease@yahoogroups.com
Subject: Re: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 



Thanks Suzann - it's like our bodies like to play tug-of-war with us! I guess I'll plan relocation more strategically - we already have another place in upstate, NY, and we're so happy there that we intend to sell the place down here and use the money to do a couple of add-ons there, including a small, indoor pool so I could get in the water daily - maybe I'll have a tub put in at the same time, since there isn't a sufficient tub that my body would be comfortable in. Maybe that would help the winters. I know that so far I feel more discomfort in the summer, but I am sure that will change eventually, so having the tub there might be a good thing.
Oh well, I guess I have to accept what I can't change and move on - it is what it is! Seems to be the tag line of my life...
Hugs
Tara

Sent from my Verizon Wireless BlackBerry


From: "Suzann Cheney"
Date: Tue, 28 Jul 2009 08:45:27 -0400
To: <Dercums_Disease@yahoogroups.com>
Subject: RE: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi Tara,

 

You questions are good ones.  I suffer terribly in the cold winters here in Upstate NY and that’s no lie.  I can’t wait for Spring every year so the pain will ease up.  I also suffer in the extreme heat (Humidity) of summer in that I swell a lot which also causes pain.  I love to be in the pool in the summer, it’s coolness is comforting when my body temps climb due to the heat and humidity and it’s a nice relief to just stand in it and bring my body temp down, and the swelling in my feet that’s a common occurrence in the summer heat.

 

I’m like you though in the winter – I’d kill to have a hot tub to climb into as I’m almost always freezing and it’s freezing outside to boot, so that may be the cause for the extra pain.  I think for me a hot tub would be just the ticket in the winter, but I don’t have one so I usually just stand under the hot shower to bring body temps up and to take some of the pain away associated with the cold.

 

Yes, it’s an unfortunate circumstance that the weather plays a big role in how we regulate our body temperatures and fluid levels as well.  I guess you have use your judgment on whether the hot tub is beneficial to your body or not.   If it’s to alleviate your pain, perhaps short visits to the tub, but if it causes the fluid retention in the legs, then you might have to soak them in the pool afterwards.  I don’t have the answers you seek and I’m sorry, but overall you will have to be the best judge of what works best for your body.

 

Take care.

 

Suzann A. Cheney

Administrative Secretary

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel:   (315) 268-6738

Fax:  (315) 268-7994

Web: http://www.clarkson.edu/admission/graduate

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Kendra55@yahoo.com
Sent: Monday, July 27, 2009 7:15 PM
To: Dercums_Disease@yahoogroups.com
Subject: Re: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 



Hi Elaine
No clotting disorders - but while the heat feels oh so good, my legs will be more swollen for a while after - meanwhile the water is good compression and the jets are great for aches. I got a pool thermometer and tried to keep the temp at 94, but for a jacuzzi that's pretty cool and quickly I find myself shivering as the water cools. My tub automatically heats the water to 104 when the jets are on, so I can't really use them if I want to keep the temp downn but I really want it hotter than that!! So when hubby is tired and achy and soaking in the tub I get jealous, but I'd love to know it's ok to use. I paid a LOT of money for it only to find out three months later that I shouldn't use it because of the lip - only I don't think DD had entered into it yet! I do know the swelling does go down after a day or so, but I worry about long-term.
What's even worse is that hubby and I are dying to get off Long Island and after learning that heat is no good for l ip/lymph we thought we should go up north a little more, but then I see on this group what cold winters put DD sufferers through! Arrgh! Why can't there be a place where it's Spring all year round?
Hugs
Tara

Sent from my Verizon Wireless BlackBerry


From: echittick@verizon.net
Date: Mon, 27 Jul 2009 17:55:31 -0500 (CDT)
To: <Dercums_Disease@yahoogroups.com>
Subject: Re: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi kendra55, I have read that some people with DD have really enjoyed the hot tub, you can adjust the temp so it is hot but not extremely hot. use your judgement do you have a clotting disorders or anthing that will cause harm when using the hot tub, if not then try it and use it in moderation. good luck keep us posted. Elaine


Jul 27, 2 009 04:47:44 PM, Dercums_Disease@yahoogroups.com wrote:

 

That is a good question, Tara. I don't have much trouble reconciling the temp differences, mainly because I am extremely heat intolerant and would not want to sit in hot water! I even shower in tepid to cold water. Sometimes I will put a hot pad on a painful shoulder or my feet (in the winter) but even that is pretty rare. I think your body will tell you which it prefers, but that is just my opinion.
Hugs and spoons,
Pamela

 


From: "Kendra55@yahoo.com" <Kendra55@yahoo.com>
To: Dercums_Disease@yahoogroups.com
Sent: Monday, July 27, 2009 10:55:18 AM
Subject: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi all!
I'm not sure if you'd consider this a "frequently asked question" but it is one I have been meaning to ask - I know there are several members who also have lipedema or lip/lymphedema. What I'm curious is how you reconcile the temperature issue? I'm told heat is bad for lip but good for DD - I have a jacuzzi tub that I don't use because heat is supposed to be a no-no for my legs, but I would love to know I can use it after all - every part of me wishes to soak in a hot tub all the time! I don't want to do anything that will make things worse though. Any thoughts?
Tara

Sent from my Verizon Wireless BlackBerry


 

 














#28636 From: Suzi More <suzimore92@...>
Date: Tue Jul 28, 2009 11:19 pm
Subject: Re: Spring all year round-OT
suzisblue
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We are planning on moving to a warmer climate in about three years and we will take Myron's mom and godfather with us, we have talked about arizona and california but a good friend keeps telling us to come down to Norfolk to see her and she says that will change our minds. So  maybe we will take a trip out there to see her.The winters in Jersey have been so bitter.
Suzi


From: Pamela Harrison <ozziespamela@...>
To: Dercums_Disease@yahoogroups.com
Sent: Tuesday, July 28, 2009 12:34:55 PM
Subject: [Dercums_Disease] Spring all year round-OT

 

 Tara wrote:  Why can't there be a place where it's Spring all year round?

There is! It is called San Diego, California..




#28635 From: Pamela Harrison <ozziespamela@...>
Date: Tue Jul 28, 2009 4:34 pm
Subject: Spring all year round-OT
ozziespamela
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 Tara wrote:  Why can't there be a place where it's Spring all year round?

There is! It is called San Diego, California..



#28634 From: "Suzann Cheney" <scheney@...>
Date: Tue Jul 28, 2009 2:38 pm
Subject: RE: Re: New Welcome File; Need some FAQ help
suzanncheney
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Send Email Send Email
 

Yes Tara – that’s about 4 hours SW of me, but a very nice area to be in.  Depending on where in that area you are – snow can get quite heavy in that region as well.  I like the snow personally and all four seasons, but I don’t like the cold that is associated with the snow.

 

I wish you and your husband much luck in find a job that will suit you each and that you can make the move soon.

 

Suzann A. Cheney

Administrative Secretary

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel:   (315) 268-6738

Fax:  (315) 268-7994

Web: http://www.clarkson.edu/admission/graduate

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Kendra55@...
Sent: Tuesday, July 28, 2009 10:33 AM
To: Dercums_Disease@yahoogroups.com
Subject: Re: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 



Hi Suzann
We're in Guilford, near Binghamton - so much further south than you. I'd be there tomorrow if I could, but this house needs a little more work to sell, and the market needs a little improving, so it may be a year or so, but that's the goal!! We are very happy there - in fact hubby has already started the job hunt, but of course nothing yet. Let's hope the economy turns around soon - too many dreams are on hold because of it!
Hugs
Tara

Sent from my Verizon Wireless BlackBerry


From: "Suzann Cheney"
Date: Tue, 28 Jul 2009 10:23:10 -0400
To: <Dercums_Disease@yahoogroups.com>
Subject: RE: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi Tara,

 

Where in Upstate is your other place may I ask.  I live n Potsdam, NY – up by the St. Lawrence River and 30 miles from the Canadian border.  Our winters can be pretty fierce here with subzero temps and plenty of snow! 

 

Good luck with your decision to sell, move and update the other place.  In the end – no matter where you live, there will be obstacles to your life with DD, so it matters most where you are the happiest, so if this place in upstate NY makes you happiest then I would say – get to moving!!!  LOL

 

Take care.

 

Suzann A. Cheney

Administrative Secretary

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel:   (315) 268-6738

Fax:  (315) 268-7994

Web: http://www.clarkson.edu/admission/graduate

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Kendra55@...
Sent: Tuesday, July 28, 2009 10:14 AM
To: Dercums_Disease@yahoogroups.com
Subject: Re: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 



Thanks Suzann - it's like our bodies like to play tug-of-war with us! I guess I'll plan relocation more strategically - we already have another place in upstate, NY, and we're so happy there that we intend to sell the place down here and use the money to do a couple of add-ons there, including a small, indoor pool so I could get in the water daily - maybe I'll have a tub put in at the same time, since there isn't a sufficient tub that my body would be comfortable in. Maybe that would help the winters. I know that so far I feel more discomfort in the summer, but I am sure that will change eventually, so having the tub there might be a good thing.
Oh well, I guess I have to accept what I can't change and move on - it is what it is! Seems to be the tag line of my life...
Hugs
Tara

Sent from my Verizon Wireless BlackBerry


From: "Suzann Cheney"
Date: Tue, 28 Jul 2009 08:45:27 -0400
To: <Dercums_Disease@yahoogroups.com>
Subject: RE: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi Tara,

 

You questions are good ones.  I suffer terribly in the cold winters here in Upstate NY and that’s no lie.  I can’t wait for Spring every year so the pain will ease up.  I also suffer in the extreme heat (Humidity) of summer in that I swell a lot which also causes pain.  I love to be in the pool in the summer, it’s coolness is comforting when my body temps climb due to the heat and humidity and it’s a nice relief to just stand in it and bring my body temp down, and the swelling in my feet that’s a common occurrence in the summer heat.

 

I’m like you though in the winter – I’d kill to have a hot tub to climb into as I’m almost always freezing and it’s freezing outside to boot, so that may be the cause for the extra pain.  I think for me a hot tub would be just the ticket in the winter, but I don’t have one so I usually just stand under the hot shower to bring body temps up and to take some of the pain away associated with the cold.

 

Yes, it’s an unfortunate circumstance that the weather plays a big role in how we regulate our body temperatures and fluid levels as well.  I guess you have use your judgment on whether the hot tub is beneficial to your body or not.   If it’s to alleviate your pain, perhaps short visits to the tub, but if it causes the fluid retention in the legs, then you might have to soak them in the pool afterwards.  I don’t have the answers you seek and I’m sorry, but overall you will have to be the best judge of what works best for your body.

 

Take care.

 

Suzann A. Cheney

Administrative Secretary

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel:   (315) 268-6738

Fax:  (315) 268-7994

Web: http://www.clarkson.edu/admission/graduate

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Kendra55@...
Sent: Monday, July 27, 2009 7:15 PM
To: Dercums_Disease@yahoogroups.com
Subject: Re: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 



Hi Elaine
No clotting disorders - but while the heat feels oh so good, my legs will be more swollen for a while after - meanwhile the water is good compression and the jets are great for aches. I got a pool thermometer and tried to keep the temp at 94, but for a jacuzzi that's pretty cool and quickly I find myself shivering as the water cools. My tub automatically heats the water to 104 when the jets are on, so I can't really use them if I want to keep the temp downn but I really want it hotter than that!! So when hubby is tired and achy and soaking in the tub I get jealous, but I'd love to know it's ok to use. I paid a LOT of money for it only to find out three months later that I shouldn't use it because of the lip - only I don't think DD had entered into it yet! I do know the swelling does go down after a day or so, but I worry about long-term.
What's even worse is that hubby and I are dying to get off Long Island and after learning that heat is no good for l ip/lymph we thought we should go up north a little more, but then I see on this group what cold winters put DD sufferers through! Arrgh! Why can't there be a place where it's Spring all year round?
Hugs
Tara

Sent from my Verizon Wireless BlackBerry


From: echittick@...
Date: Mon, 27 Jul 2009 17:55:31 -0500 (CDT)
To: <Dercums_Disease@yahoogroups.com>
Subject: Re: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi kendra55, I have read that some people with DD have really enjoyed the hot tub, you can adjust the temp so it is hot but not extremely hot. use your judgement do you have a clotting disorders or anthing that will cause harm when using the hot tub, if not then try it and use it in moderation. good luck keep us posted. Elaine


Jul 27, 2 009 04:47:44 PM, Dercums_Disease@yahoogroups.com wrote:

 

That is a good question, Tara. I don't have much trouble reconciling the temp differences, mainly because I am extremely heat intolerant and would not want to sit in hot water! I even shower in tepid to cold water. Sometimes I will put a hot pad on a painful shoulder or my feet (in the winter) but even that is pretty rare. I think your body will tell you which it prefers, but that is just my opinion.
Hugs and spoons,
Pamela

 


From: "Kendra55@..." <Kendra55@...>
To: Dercums_Disease@yahoogroups.com
Sent: Monday, July 27, 2009 10:55:18 AM
Subject: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi all!
I'm not sure if you'd consider this a "frequently asked question" but it is one I have been meaning to ask - I know there are several members who also have lipedema or lip/lymphedema. What I'm curious is how you reconcile the temperature issue? I'm told heat is bad for lip but good for DD - I have a jacuzzi tub that I don't use because heat is supposed to be a no-no for my legs, but I would love to know I can use it after all - every part of me wishes to soak in a hot tub all the time! I don't want to do anything that will make things worse though. Any thoughts?
Tara

Sent from my Verizon Wireless BlackBerry


 

 














#28633 From: Kendra55@...
Date: Tue Jul 28, 2009 2:32 pm
Subject: Re: Re: New Welcome File; Need some FAQ help
kendra55
Offline Offline
Send Email Send Email
 
Hi Suzann
We're in Guilford, near Binghamton - so much further south than you. I'd be there tomorrow if I could, but this house needs a little more work to sell, and the market needs a little improving, so it may be a year or so, but that's the goal!! We are very happy there - in fact hubby has already started the job hunt, but of course nothing yet. Let's hope the economy turns around soon - too many dreams are on hold because of it!
Hugs
Tara

Sent from my Verizon Wireless BlackBerry


From: "Suzann Cheney"
Date: Tue, 28 Jul 2009 10:23:10 -0400
To: <Dercums_Disease@yahoogroups.com>
Subject: RE: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi Tara,

 

Where in Upstate is your other place may I ask.  I live n Potsdam, NY – up by the St. Lawrence River and 30 miles from the Canadian border.  Our winters can be pretty fierce here with subzero temps and plenty of snow! 

 

Good luck with your decision to sell, move and update the other place.  In the end – no matter where you live, there will be obstacles to your life with DD, so it matters most where you are the happiest, so if this place in upstate NY makes you happiest then I would say – get to moving!!!  LOL

 

Take care.

 

Suzann A. Cheney

Administrative Secretary

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel:   (315) 268-6738

Fax:  (315) 268-7994

Web: http://www.clarkson.edu/admission/graduate

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Kendra55@yahoo.com
Sent: Tuesday, July 28, 2009 10:14 AM
To: Dercums_Disease@yahoogroups.com
Subject: Re: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 



Thanks Suzann - it's like our bodies like to play tug-of-war with us! I guess I'll plan relocation more strategically - we already have another place in upstate, NY, and we're so happy there that we intend to sell the place down here and use the money to do a couple of add-ons there, including a small, indoor pool so I could get in the water daily - maybe I'll have a tub put in at the same time, since there isn't a sufficient tub that my body would be comfortable in. Maybe that would help the winters. I know that so far I feel more discomfort in the summer, but I am sure that will change eventually, so having the tub there might be a good thing.
Oh well, I guess I have to accept what I can't change and move on - it is what it is! Seems to be the tag line of my life...
Hugs
Tara

Sent from my Verizon Wireless BlackBerry


From: "Suzann Cheney"
Date: Tue, 28 Jul 2009 08:45:27 -0400
To: <Dercums_Disease@yahoogroups.com>
Subject: RE: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi Tara,

 

You questions are good ones.  I suffer terribly in the cold winters here in Upstate NY and that’s no lie.  I can’t wait for Spring every year so the pain will ease up.  I also suffer in the extreme heat (Humidity) of summer in that I swell a lot which also causes pain.  I love to be in the pool in the summer, it’s coolness is comforting when my body temps climb due to the heat and humidity and it’s a nice relief to just stand in it and bring my body temp down, and the swelling in my feet that’s a common occurrence in the summer heat.

 

I’m like you though in the winter – I’d kill to have a hot tub to climb into as I’m almost always freezing and it’s freezing outside to boot, so that may be the cause for the extra pain.  I think for me a hot tub would be just the ticket in the winter, but I don’t have one so I usually just stand under the hot shower to bring body temps up and to take some of the pain away associated with the cold.

 

Yes, it’s an unfortunate circumstance that the weather plays a big role in how we regulate our body temperatures and fluid levels as well.  I guess you have use your judgment on whether the hot tub is beneficial to your body or not.   If it’s to alleviate your pain, perhaps short visits to the tub, but if it causes the fluid retention in the legs, then you might have to soak them in the pool afterwards.  I don’t have the answers you seek and I’m sorry, but overall you will have to be the best judge of what works best for your body.

 

Take care.

 

Suzann A. Cheney

Administrative Secretary

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel:   (315) 268-6738

Fax:  (315) 268-7994

Web: http://www.clarkson.edu/admission/graduate

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Kendra55@yahoo.com
Sent: Monday, July 27, 2009 7:15 PM
To: Dercums_Disease@yahoogroups.com
Subject: Re: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 



Hi Elaine
No clotting disorders - but while the heat feels oh so good, my legs will be more swollen for a while after - meanwhile the water is good compression and the jets are great for aches. I got a pool thermometer and tried to keep the temp at 94, but for a jacuzzi that's pretty cool and quickly I find myself shivering as the water cools. My tub automatically heats the water to 104 when the jets are on, so I can't really use them if I want to keep the temp downn but I really want it hotter than that!! So when hubby is tired and achy and soaking in the tub I get jealous, but I'd love to know it's ok to use. I paid a LOT of money for it only to find out three months later that I shouldn't use it because of the lip - only I don't think DD had entered into it yet! I do know the swelling does go down after a day or so, but I worry about long-term.
What's even worse is that hubby and I are dying to get off Long Island and after learning that heat is no good for l ip/lymph we thought we should go up north a little more, but then I see on this group what cold winters put DD sufferers through! Arrgh! Why can't there be a place where it's Spring all year round?
Hugs
Tara

Sent from my Verizon Wireless BlackBerry


From: echittick@verizon.net
Date: Mon, 27 Jul 2009 17:55:31 -0500 (CDT)
To: <Dercums_Disease@yahoogroups.com>
Subject: Re: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi kendra55, I have read that some people with DD have really enjoyed the hot tub, you can adjust the temp so it is hot but not extremely hot. use your judgement do you have a clotting disorders or anthing that will cause harm when using the hot tub, if not then try it and use it in moderation. good luck keep us posted. Elaine


Jul 27, 2 009 04:47:44 PM, Dercums_Disease@yahoogroups.com wrote:

 

That is a good question, Tara. I don't have much trouble reconciling the temp differences, mainly because I am extremely heat intolerant and would not want to sit in hot water! I even shower in tepid to cold water. Sometimes I will put a hot pad on a painful shoulder or my feet (in the winter) but even that is pretty rare. I think your body will tell you which it prefers, but that is just my opinion.
Hugs and spoons,
Pamela

 


From: "Kendra55@yahoo.com" <Kendra55@yahoo.com>
To: Dercums_Disease@yahoogroups.com
Sent: Monday, July 27, 2009 10:55:18 AM
Subject: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi all!
I'm not sure if you'd consider this a "frequently asked question" but it is one I have been meaning to ask - I know there are several members who also have lipedema or lip/lymphedema. What I'm curious is how you reconcile the temperature issue? I'm told heat is bad for lip but good for DD - I have a jacuzzi tub that I don't use because heat is supposed to be a no-no for my legs, but I would love to know I can use it after all - every part of me wishes to soak in a hot tub all the time! I don't want to do anything that will make things worse though. Any thoughts?
Tara

Sent from my Verizon Wireless BlackBerry


 

 









#28632 From: "Suzann Cheney" <scheney@...>
Date: Tue Jul 28, 2009 2:23 pm
Subject: RE: Re: New Welcome File; Need some FAQ help
suzanncheney
Offline Offline
Send Email Send Email
 

Hi Tara,

 

Where in Upstate is your other place may I ask.  I live n Potsdam, NY – up by the St. Lawrence River and 30 miles from the Canadian border.  Our winters can be pretty fierce here with subzero temps and plenty of snow! 

 

Good luck with your decision to sell, move and update the other place.  In the end – no matter where you live, there will be obstacles to your life with DD, so it matters most where you are the happiest, so if this place in upstate NY makes you happiest then I would say – get to moving!!!  LOL

 

Take care.

 

Suzann A. Cheney

Administrative Secretary

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel:   (315) 268-6738

Fax:  (315) 268-7994

Web: http://www.clarkson.edu/admission/graduate

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Kendra55@...
Sent: Tuesday, July 28, 2009 10:14 AM
To: Dercums_Disease@yahoogroups.com
Subject: Re: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 



Thanks Suzann - it's like our bodies like to play tug-of-war with us! I guess I'll plan relocation more strategically - we already have another place in upstate, NY, and we're so happy there that we intend to sell the place down here and use the money to do a couple of add-ons there, including a small, indoor pool so I could get in the water daily - maybe I'll have a tub put in at the same time, since there isn't a sufficient tub that my body would be comfortable in. Maybe that would help the winters. I know that so far I feel more discomfort in the summer, but I am sure that will change eventually, so having the tub there might be a good thing.
Oh well, I guess I have to accept what I can't change and move on - it is what it is! Seems to be the tag line of my life...
Hugs
Tara

Sent from my Verizon Wireless BlackBerry


From: "Suzann Cheney"
Date: Tue, 28 Jul 2009 08:45:27 -0400
To: <Dercums_Disease@yahoogroups.com>
Subject: RE: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi Tara,

 

You questions are good ones.  I suffer terribly in the cold winters here in Upstate NY and that’s no lie.  I can’t wait for Spring every year so the pain will ease up.  I also suffer in the extreme heat (Humidity) of summer in that I swell a lot which also causes pain.  I love to be in the pool in the summer, it’s coolness is comforting when my body temps climb due to the heat and humidity and it’s a nice relief to just stand in it and bring my body temp down, and the swelling in my feet that’s a common occurrence in the summer heat.

 

I’m like you though in the winter – I’d kill to have a hot tub to climb into as I’m almost always freezing and it’s freezing outside to boot, so that may be the cause for the extra pain.  I think for me a hot tub would be just the ticket in the winter, but I don’t have one so I usually just stand under the hot shower to bring body temps up and to take some of the pain away associated with the cold.

 

Yes, it’s an unfortunate circumstance that the weather plays a big role in how we regulate our body temperatures and fluid levels as well.  I guess you have use your judgment on whether the hot tub is beneficial to your body or not.   If it’s to alleviate your pain, perhaps short visits to the tub, but if it causes the fluid retention in the legs, then you might have to soak them in the pool afterwards.  I don’t have the answers you seek and I’m sorry, but overall you will have to be the best judge of what works best for your body.

 

Take care.

 

Suzann A. Cheney

Administrative Secretary

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel:   (315) 268-6738

Fax:  (315) 268-7994

Web: http://www.clarkson.edu/admission/graduate

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Kendra55@...
Sent: Monday, July 27, 2009 7:15 PM
To: Dercums_Disease@yahoogroups.com
Subject: Re: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 



Hi Elaine
No clotting disorders - but while the heat feels oh so good, my legs will be more swollen for a while after - meanwhile the water is good compression and the jets are great for aches. I got a pool thermometer and tried to keep the temp at 94, but for a jacuzzi that's pretty cool and quickly I find myself shivering as the water cools. My tub automatically heats the water to 104 when the jets are on, so I can't really use them if I want to keep the temp downn but I really want it hotter than that!! So when hubby is tired and achy and soaking in the tub I get jealous, but I'd love to know it's ok to use. I paid a LOT of money for it only to find out three months later that I shouldn't use it because of the lip - only I don't think DD had entered into it yet! I do know the swelling does go down after a day or so, but I worry about long-term.
What's even worse is that hubby and I are dying to get off Long Island and after learning that heat is no good for l ip/lymph we thought we should go up north a little more, but then I see on this group what cold winters put DD sufferers through! Arrgh! Why can't there be a place where it's Spring all year round?
Hugs
Tara

Sent from my Verizon Wireless BlackBerry


From: echittick@...
Date: Mon, 27 Jul 2009 17:55:31 -0500 (CDT)
To: <Dercums_Disease@yahoogroups.com>
Subject: Re: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi kendra55, I have read that some people with DD have really enjoyed the hot tub, you can adjust the temp so it is hot but not extremely hot. use your judgement do you have a clotting disorders or anthing that will cause harm when using the hot tub, if not then try it and use it in moderation. good luck keep us posted. Elaine


Jul 27, 2 009 04:47:44 PM, Dercums_Disease@yahoogroups.com wrote:

 

That is a good question, Tara. I don't have much trouble reconciling the temp differences, mainly because I am extremely heat intolerant and would not want to sit in hot water! I even shower in tepid to cold water. Sometimes I will put a hot pad on a painful shoulder or my feet (in the winter) but even that is pretty rare. I think your body will tell you which it prefers, but that is just my opinion.
Hugs and spoons,
Pamela

 


From: "Kendra55@..." <Kendra55@...>
To: Dercums_Disease@yahoogroups.com
Sent: Monday, July 27, 2009 10:55:18 AM
Subject: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi all!
I'm not sure if you'd consider this a "frequently asked question" but it is one I have been meaning to ask - I know there are several members who also have lipedema or lip/lymphedema. What I'm curious is how you reconcile the temperature issue? I'm told heat is bad for lip but good for DD - I have a jacuzzi tub that I don't use because heat is supposed to be a no-no for my legs, but I would love to know I can use it after all - every part of me wishes to soak in a hot tub all the time! I don't want to do anything that will make things worse though. Any thoughts?
Tara

Sent from my Verizon Wireless BlackBerry


 

 









#28631 From: Kendra55@...
Date: Tue Jul 28, 2009 2:14 pm
Subject: Re: Re: New Welcome File; Need some FAQ help
kendra55
Offline Offline
Send Email Send Email
 
Thanks Suzann - it's like our bodies like to play tug-of-war with us! I guess I'll plan relocation more strategically - we already have another place in upstate, NY, and we're so happy there that we intend to sell the place down here and use the money to do a couple of add-ons there, including a small, indoor pool so I could get in the water daily - maybe I'll have a tub put in at the same time, since there isn't a sufficient tub that my body would be comfortable in. Maybe that would help the winters. I know that so far I feel more discomfort in the summer, but I am sure that will change eventually, so having the tub there might be a good thing.
Oh well, I guess I have to accept what I can't change and move on - it is what it is! Seems to be the tag line of my life...
Hugs
Tara

Sent from my Verizon Wireless BlackBerry


From: "Suzann Cheney"
Date: Tue, 28 Jul 2009 08:45:27 -0400
To: <Dercums_Disease@yahoogroups.com>
Subject: RE: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi Tara,

 

You questions are good ones.  I suffer terribly in the cold winters here in Upstate NY and that’s no lie.  I can’t wait for Spring every year so the pain will ease up.  I also suffer in the extreme heat (Humidity) of summer in that I swell a lot which also causes pain.  I love to be in the pool in the summer, it’s coolness is comforting when my body temps climb due to the heat and humidity and it’s a nice relief to just stand in it and bring my body temp down, and the swelling in my feet that’s a common occurrence in the summer heat.

 

I’m like you though in the winter – I’d kill to have a hot tub to climb into as I’m almost always freezing and it’s freezing outside to boot, so that may be the cause for the extra pain.  I think for me a hot tub would be just the ticket in the winter, but I don’t have one so I usually just stand under the hot shower to bring body temps up and to take some of the pain away associated with the cold.

 

Yes, it’s an unfortunate circumstance that the weather plays a big role in how we regulate our body temperatures and fluid levels as well.  I guess you have use your judgment on whether the hot tub is beneficial to your body or not.   If it’s to alleviate your pain, perhaps short visits to the tub, but if it causes the fluid retention in the legs, then you might have to soak them in the pool afterwards.  I don’t have the answers you seek and I’m sorry, but overall you will have to be the best judge of what works best for your body.

 

Take care.

 

Suzann A. Cheney

Administrative Secretary

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel:   (315) 268-6738

Fax:  (315) 268-7994

Web: http://www.clarkson.edu/admission/graduate

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Kendra55@yahoo.com
Sent: Monday, July 27, 2009 7:15 PM
To: Dercums_Disease@yahoogroups.com
Subject: Re: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 



Hi Elaine
No clotting disorders - but while the heat feels oh so good, my legs will be more swollen for a while after - meanwhile the water is good compression and the jets are great for aches. I got a pool thermometer and tried to keep the temp at 94, but for a jacuzzi that's pretty cool and quickly I find myself shivering as the water cools. My tub automatically heats the water to 104 when the jets are on, so I can't really use them if I want to keep the temp downn but I really want it hotter than that!! So when hubby is tired and achy and soaking in the tub I get jealous, but I'd love to know it's ok to use. I paid a LOT of money for it only to find out three months later that I shouldn't use it because of the lip - only I don't think DD had entered into it yet! I do know the swelling does go down after a day or so, but I worry about long-term.
What's even worse is that hubby and I are dying to get off Long Island and after learning that heat is no good for l ip/lymph we thought we should go up north a little more, but then I see on this group what cold winters put DD sufferers through! Arrgh! Why can't there be a place where it's Spring all year round?
Hugs
Tara

Sent from my Verizon Wireless BlackBerry


From: echittick@verizon.net
Date: Mon, 27 Jul 2009 17:55:31 -0500 (CDT)
To: <Dercums_Disease@yahoogroups.com>
Subject: Re: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi kendra55, I have read that some people with DD have really enjoyed the hot tub, you can adjust the temp so it is hot but not extremely hot. use your judgement do you have a clotting disorders or anthing that will cause harm when using the hot tub, if not then try it and use it in moderation. good luck keep us posted. Elaine


Jul 27, 2 009 04:47:44 PM, Dercums_Disease@yahoogroups.com wrote:

 

That is a good question, Tara. I don't have much trouble reconciling the temp differences, mainly because I am extremely heat intolerant and would not want to sit in hot water! I even shower in tepid to cold water. Sometimes I will put a hot pad on a painful shoulder or my feet (in the winter) but even that is pretty rare. I think your body will tell you which it prefers, but that is just my opinion.
Hugs and spoons,
Pamela

 


From: "Kendra55@yahoo.com" <Kendra55@yahoo.com>
To: Dercums_Disease@yahoogroups.com
Sent: Monday, July 27, 2009 10:55:18 AM
Subject: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi all!
I'm not sure if you'd consider this a "frequently asked question" but it is one I have been meaning to ask - I know there are several members who also have lipedema or lip/lymphedema. What I'm curious is how you reconcile the temperature issue? I'm told heat is bad for lip but good for DD - I have a jacuzzi tub that I don't use because heat is supposed to be a no-no for my legs, but I would love to know I can use it after all - every part of me wishes to soak in a hot tub all the time! I don't want to do anything that will make things worse though. Any thoughts?
Tara

Sent from my Verizon Wireless BlackBerry


 

 





#28630 From: "Suzann Cheney" <scheney@...>
Date: Tue Jul 28, 2009 12:45 pm
Subject: RE: Re: New Welcome File; Need some FAQ help
suzanncheney
Offline Offline
Send Email Send Email
 

Hi Tara,

 

You questions are good ones.  I suffer terribly in the cold winters here in Upstate NY and that’s no lie.  I can’t wait for Spring every year so the pain will ease up.  I also suffer in the extreme heat (Humidity) of summer in that I swell a lot which also causes pain.  I love to be in the pool in the summer, it’s coolness is comforting when my body temps climb due to the heat and humidity and it’s a nice relief to just stand in it and bring my body temp down, and the swelling in my feet that’s a common occurrence in the summer heat.

 

I’m like you though in the winter – I’d kill to have a hot tub to climb into as I’m almost always freezing and it’s freezing outside to boot, so that may be the cause for the extra pain.  I think for me a hot tub would be just the ticket in the winter, but I don’t have one so I usually just stand under the hot shower to bring body temps up and to take some of the pain away associated with the cold.

 

Yes, it’s an unfortunate circumstance that the weather plays a big role in how we regulate our body temperatures and fluid levels as well.  I guess you have use your judgment on whether the hot tub is beneficial to your body or not.   If it’s to alleviate your pain, perhaps short visits to the tub, but if it causes the fluid retention in the legs, then you might have to soak them in the pool afterwards.  I don’t have the answers you seek and I’m sorry, but overall you will have to be the best judge of what works best for your body.

 

Take care.

 

Suzann A. Cheney

Administrative Secretary

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel:   (315) 268-6738

Fax:  (315) 268-7994

Web: http://www.clarkson.edu/admission/graduate

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Kendra55@...
Sent: Monday, July 27, 2009 7:15 PM
To: Dercums_Disease@yahoogroups.com
Subject: Re: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 



Hi Elaine
No clotting disorders - but while the heat feels oh so good, my legs will be more swollen for a while after - meanwhile the water is good compression and the jets are great for aches. I got a pool thermometer and tried to keep the temp at 94, but for a jacuzzi that's pretty cool and quickly I find myself shivering as the water cools. My tub automatically heats the water to 104 when the jets are on, so I can't really use them if I want to keep the temp downn but I really want it hotter than that!! So when hubby is tired and achy and soaking in the tub I get jealous, but I'd love to know it's ok to use. I paid a LOT of money for it only to find out three months later that I shouldn't use it because of the lip - only I don't think DD had entered into it yet! I do know the swelling does go down after a day or so, but I worry about long-term.
What's even worse is that hubby and I are dying to get off Long Island and after learning that heat is no good for l ip/lymph we thought we should go up north a little more, but then I see on this group what cold winters put DD sufferers through! Arrgh! Why can't there be a place where it's Spring all year round?
Hugs
Tara

Sent from my Verizon Wireless BlackBerry


From: echittick@...
Date: Mon, 27 Jul 2009 17:55:31 -0500 (CDT)
To: <Dercums_Disease@yahoogroups.com>
Subject: Re: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi kendra55, I have read that some people with DD have really enjoyed the hot tub, you can adjust the temp so it is hot but not extremely hot. use your judgement do you have a clotting disorders or anthing that will cause harm when using the hot tub, if not then try it and use it in moderation. good luck keep us posted. Elaine


Jul 27, 2 009 04:47:44 PM, Dercums_Disease@yahoogroups.com wrote:

 

That is a good question, Tara. I don't have much trouble reconciling the temp differences, mainly because I am extremely heat intolerant and would not want to sit in hot water! I even shower in tepid to cold water. Sometimes I will put a hot pad on a painful shoulder or my feet (in the winter) but even that is pretty rare. I think your body will tell you which it prefers, but that is just my opinion.
Hugs and spoons,
Pamela

 


From: "Kendra55@..." <Kendra55@...>
To: Dercums_Disease@yahoogroups.com
Sent: Monday, July 27, 2009 10:55:18 AM
Subject: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Hi all!
I'm not sure if you'd consider this a "frequently asked question" but it is one I have been meaning to ask - I know there are several members who also have lipedema or lip/lymphedema. What I'm curious is how you reconcile the temperature issue? I'm told heat is bad for lip but good for DD - I have a jacuzzi tub that I don't use because heat is supposed to be a no-no for my legs, but I would love to know I can use it after all - every part of me wishes to soak in a hot tub all the time! I don't want to do anything that will make things worse though. Any thoughts?
Tara

Sent from my Verizon Wireless BlackBerry


 

 





#28629 From: "Calle_Kitten" <calle_kitten@...>
Date: Tue Jul 28, 2009 1:07 am
Subject: Re: Re: New Welcome File; Need some FAQ help
calle_kitten
Offline Offline
Send Email Send Email
 

 Thanks hon, but these were questions I was submitting to Will that he might add to the new users files :)
----- Original Message -----
Sent: Monday, July 27, 2009 4:10 PM
Subject: Re: Re: [Dercums_Disease] New Welcome File; Need some FAQ help

 

I know that DD can be disabling if you are disabled and have documents to back it up and doctors who can verify it, I am not on disability and I heard it takes about a year if not longer to get disabilty. Others who are disabled can tell you more. each day I find it just a little more or quit alot of pai but not to get to the point that I can not function on a daily basis. I would love someone to clean my house and do laundry. I work forty hours and I work hard. But it takes away from daily chores and daily activities. one day I might be at the point I can't work but I hope not for along time. keep us posted and good luck.

Jul 26, 2009 05:02:33 PM, Dercums_Disease@yahoogroups.com wrote:

 

So many of us have also been diagnosed with lipedema.  How about a question re that ?
 
Another, does DD qualify me for disability?
 
 
 
 
 
 
----- Original Message -----
From: waksmf1984
Sent: Sunday, July 26, 2009 2:03 PM
Subject: [Dercums_Disease] New Welcome File; Need some FAQ help

 

Howdy all! Hope you are enjoying a lazy summer day, nice high air pressure with low humidity; the sun warm upon the face, the light breeze not too tingly on those tender spots. I have finally gotten around to looking at the old welcome file, and it was written with an older version of the Word program, so I updated it. That part was easy. All I had to do was save it in a different format.

Now comes the hard part - I am going to take a peek at the Frequently Asked Questions file. The FAQ probably needs some help, and so do I. Soooooo, please send to me or post anything that you would consider to be a frequent question on the board. I think that we can all keep our minds a bit sharper by tossing around some of the ideas for answers, as well. Feel free to disagree politely, please. And feel free to hear disagreement with a thicker skin. This could be a good exercise in passing around those anecdotal remedies we have found that work for us.

What is Dercum's Disease? How is it diagnosed? Are there laboratory tests? What is panniculitis fasciitis? What is Madelung's Disease? What are some of the treatments? Recommendations? Why not get myself a good strong lidocaine drip and hit the road training for a marathon for the following few months? I can just get these things cut out, right? My physical therapist always says no pain, no gain, so they started me on some serious stretching and twisting routines, get my body back in shape and drop this weight....Ready to go, right?!?

OK, so obviously I will steal the more technical info from other sites. (And I am in a bit of a snarky mood right now.) I can also use some of the stuff that has been written before from various sites, and we don't need to get into too much detail in these answers. So speak your mind to the board, or privately (off-list) to me. Off I go! - Later - Will


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