Search the web
Sign In
New User? Sign Up
Dercums_Disease · Support Group
? Already a member? Sign in to Yahoo!

Yahoo! Groups Tips

Did you know...
Show off your group to the world. Share a photo of your group with us.

Best of Y! Groups

   Check them out and nominate your group.
Having problems with message search? Fill out this form to ensure your group is one of the first to be migrated to the new message search system.

Messages

  Messages Help
Advanced
Messages 10229 - 10258 of 29307   Newest  |  < Newer  |  Older >  |  Oldest
Messages: Show Message Summaries   (Group by Topic) Sort by Date v  
#10258 From: "Heather Reilly" <reilly7h@...>
Date: Fri Apr 1, 2005 5:04 pm
Subject: Re: help!!
reilly7h
Offline Offline
Send Email Send Email
 

thank you- that' s exactly what I've done.  I have some really good articles, all my medical records (which he has also), the ICD codes for dercum's /adiposis dolorosa and I already have a list of all the board certified plastic surgeons in my state along with one I found here that's done over 1000 procedures- just in case he's ready to get aggressive like me.  I want to get done what teddy and Amanda had done.

I'll let you guys know what happens later tonight.

thanks for the spoons.

heather




 
----Original Message Follows---- From: Dora Maillaro-Tomalonis <doramt@...> Reply-To: Dercums_Disease@yahoogroups.com To: Dercums_Disease@yahoogroups.com Subject: Re: [Dercums_Disease] help!! Date: Thu, 31 Mar 2005 19:09:32 -0500 Dear Heather, Go to www.dercumshope.org. Most of the best articles are on the Resources page. You can find others, but this is a good collection. Also, the Links and Files pages for this web site may have a few other things. Good luck! Be well and take care. Use your spoons wisely. Peace, -- Dora Maillaro-Tomalonis doramt@... 888-238-1929 (Voicemail/Fax) 586-945-4388 (cell) ----------------------- The Spoon Theory http://www.butyoudontlooksick.com/spoons.htm ---------------------- "The difference between the right word and the almost right word is the difference between lightning and the lightning bug." --Mark Twain ---------------------- Lipomas Can Hurt! http://www.nlm.nih.gov/medlineplus/ency/imagepages/1209.htm ============== reilly7h wrote: > > > I am going to see my Dermatologist Friday, he did a biopsy after a long > year with many other doctors and specialist proved fruitless. He didn't > know what to think when it came back section of lipoma. He told me > that I just had multiple lipomas and could have them cut out one at a > time, that's about all he could say. Well, he actually had his > assistant see me -he was supposed to call me back and never did. > I am getting all the dercum's info available that I can plus all my > medical records. If any of you can give me any other information I can > use to convince him I have Dercum's it would be greatly appreicated, > any help or advice is wanted also! > thanks, > heather

#10257 From: Dora Maillaro-Tomalonis <doramt@...>
Date: Fri Apr 1, 2005 5:14 am
Subject: Doorknobs & Keys
doramtw3
Offline Offline
Send Email Send Email
 
Greetings!

Look here for a lever-like door handle attachment that goes on over
existing doorknobs: http://www.dynamic-living.com/door_lever.htm.

This is a replacement lever for a doorknob:
http://www.dynamic-living.com/lever_door_handle.htm

Here is a key-holder for those days when it is hard to turn a key in a
lock: http://www.dynamic-living.com/key-holder.htm. It will not work
with the newer car keys with the big plastic caps on them.

Here is a universal grip for turning small knobs:
http://www.dynamic-living.com/universal_grip.htm. It might work with the
newer car keys, but I have not tried it myself. I will have to check it
out myself over the weekend.

I also find that the open-weave rubbery draw liner one can buy at
Wal-Mart, Target, or hardware stores is great stuff to wrap doorknobs
with - keep it in place with a rubber band. You can make it as thick as
you need to, and it gives extra grip traction. I use it to build up the
handle on my cane if my hands hurt too much, and for opening jars and
soda pop bottles.

Be well and take care. Use your spoons wisely.

Peace,
--
Dora

#10256 From: <ToadHill@...>
Date: Fri Apr 1, 2005 2:36 am
Subject: Re: Doorknobs
contentefren...
Offline Offline
Send Email Send Email
 
Thanks for the advice Judi.
Kay~K
----- Original Message -----
From: nonny46
Sent: Friday, April 01, 2005 2:12 AM
Subject: [Dercums_Disease] Doorknobs


For Kay and others--I have found a doorknob adapter that makes it
easier to open doorknobs.  If there is a place near you that sells
hospital equipment or aids for living (like jar grips, canes, etc.)
they might have one.  When I was still working at church, the doorknobs
at the office were giant-size and very thin and I couldn't open them,
but this helped.  I have put one on the door between our garage and
house as I was having trouble turning the knob.

My biggest trouble now is turning the key to start our van--they did
adjust it somewhat, but on days when my wrists are very swollen (like
today) I can't start the van myself, so have to have someone go with
me.  I went out one day last week, and had to ask the guy at the
grocery store to start my car for me!  We're planning on a new car next
year, and it will be easier to start.

We also invested $40 in an electric jar opener--what a help!

Judi





#10255 From: "Amanda Kreeb" <amandakreeb@...>
Date: Fri Apr 1, 2005 12:12 am
Subject: Reality TV
amandakreeb
Offline Offline
Send Email Send Email
 
Jeannie,
    Good luck with your diagnosis - I will definately keep you (as
well as your children) in my prayers.  I'm not sure if I'm ready to
claim my surgery as a success - although I did survive and I find
things to smile about daily - give me a few weeks to see what's
cooking beneath the black and blue.  I got a good chuckle out of
your tv comment - about how liposuction is the one surgery you can't
watch.  I haven't owned a television for 10 years and although I am
knowledgeable about the technical aspects of the surgery - have
never seen it myself.  I think it's a blessing :)  My friends make
faces and share colorful adjectives about the abusive nature of the
handywork but that's as close as I come.  Is ignorance bliss?
Maybe. ha.

    I have a followup with my doctor tomorrow - and I am going to
discuss what he's willing to discuss with other doctors or Dercum's
patients.  I don't want to overwhelm the man - he's new to the
problem too.  I have other questions I would like to ask him which I
will post as well too....

    Wishing you well and lots of healing love,
    Amanda



--- In Dercums_Disease@yahoogroups.com, "jeannie_c85"
<jeannie_c85@y...> wrote:
>
> It's been a long time, hope you remember me. :) First I want to
give
> Amanda my thoughts and prayers. Man, you are one strong, couragous
> woman! I bow to you. :o)  I don't know if I would have the guts to
> do that. Many prayers going up for a fast recovery and that this
> works wonderfully for you as it did for Teddy.
> PS:  Teddy, don't feel left out hon, I bow to you too! :) It's
great
> to hear a success story about this surgery. I know i would be too
> scared to do it, it's the one surgery I can't watch.
>
> Hi Teddy! :)
> Hi Judy :)
> Hi Dorrit :)
> Hi Jacki and Fiesty and well, everyone.....who am I kidding? I
can't
> remember everyone's screen names right now, forgive me.
>
> Well, you know what I have decided? Finally? that I do indeed have
> this dreaded disease. everything you talk about as far as symptoms
> go I either have or am getting. And I'm non too happy, as you all
> can relate to. Now to get my fat arse back in to the doc. oh and
to
> do the testing he wanting me to do months ago.
>
> I may have to switch docs as mine didn't seem to think Dercums is
a
> real disease. (It's an internet phantom disease, don't cha know!)
> But, with Amanda's permission I plan to print out the names of her
> docs and hopefully, hopefully my doc will call one of them and
learn
> something of dercums.
>
> Good news! I don't know if you knew this but my 18 year old
daughter
> moved to colorado last july to be with her "one and only 'love'"
> Much to my disappointment. However, she is home now!! Yayyyyy :o)
I
> am so so happy she got away from this guy! Now hopefully she will
> start college and get her life started there!
>
> Both my kids have been showing me lumps they are finding on
> themselves. *sigh* A mother's nightmare for sure. :(  I am praying
> they don't get them to the extreme I have them.
>
> So, I am having good days and bad days. The trip from Minnesota to
> Colorado was a long one. 5 days in the truck, luckily my hubby did
> most all the driving and the truck was comfortable. But there was
a
> few times I was being stabbed by that red hot knife we all know so
> well. I made it through ok tho and we got her all moved home.
>
> Now, I'm back at work, trying to read up what I missed.
>
> You all take care, I have you in my prayers, as always... I'll
keep
> you posted. I think it's time to dig out the referal to the
> endocrinologist and surgeon and make those appointments once and
for
> all. If anything, I can start getting the new ones out from around
> my elbows. I have to do something fast as my hands are starting to
> fall asleep and my arms are tingling a lot. I need them steady and
> fast for the extremely small microscope work I do.
>
> Wish me luck. I keep keepin on. I keep hoping if I ignore this, it
> will go away. so far it isn't working. *sigh*
>
> Jeannie (jean at dercums hope)

#10254 From: Dora Maillaro-Tomalonis <doramt@...>
Date: Fri Apr 1, 2005 12:09 am
Subject: Re: help!!
doramtw3
Offline Offline
Send Email Send Email
 
Dear Heather,

Go to www.dercumshope.org. Most of the best articles are on the
Resources page. You can find others, but this is a good collection.
Also, the Links and Files pages for this web site may have a few other
things.

Good luck! Be well and take care. Use your spoons wisely.

Peace,
--
Dora Maillaro-Tomalonis
doramt@...
888-238-1929 (Voicemail/Fax)
586-945-4388 (cell)
-----------------------
The Spoon Theory
http://www.butyoudontlooksick.com/spoons.htm
----------------------
"The difference between the right word and the almost right word
is the difference between lightning and the lightning bug."
--Mark Twain
----------------------
Lipomas Can Hurt!
http://www.nlm.nih.gov/medlineplus/ency/imagepages/1209.htm
==============
reilly7h wrote:

>
>
> I am going to see my Dermatologist Friday, he did a biopsy after a long
> year with many other doctors and specialist proved fruitless. He didn't
> know what to think when it came back section of lipoma.  He told me
> that I just had multiple lipomas and could have them cut out one at a
> time, that's about all he could say.  Well, he actually had his
> assistant see me -he was supposed to call me back and never did.
> I am getting all the dercum's info available that I can plus all my
> medical records.  If any of you can give me any other information I can
> use to convince him I have Dercum's it would be greatly appreicated,
> any help or advice is wanted also!
> thanks,
> heather

#10253 From: "reilly7h" <reilly7h@...>
Date: Thu Mar 31, 2005 8:35 am
Subject: help!!
reilly7h
Offline Offline
Send Email Send Email
 
I am going to see my Dermatologist Friday, he did a biopsy after a long
year with many other doctors and specialist proved fruitless. He didn't
know what to think when it came back section of lipoma.  He told me
that I just had multiple lipomas and could have them cut out one at a
time, that's about all he could say.  Well, he actually had his
assistant see me -he was supposed to call me back and never did.
I am getting all the dercum's info available that I can plus all my
medical records.  If any of you can give me any other information I can
use to convince him I have Dercum's it would be greatly appreicated,
any help or advice is wanted also!
thanks,
heather

#10252 From: "Denise and Barry West" <denbar@...>
Date: Thu Mar 31, 2005 10:42 pm
Subject: Re: Welcome back, Jeannie
deniseheather53
Offline Offline
Send Email Send Email
 
 
God works in mysterious ways.....what better help to those poor women than Cathy.
Hugs to her for her courage and one  for you 'cos you are her Mum.
love Teddy
 
 
 
  Sometimes I wish ours had never left
home, but then we wouldn't have moved here to Indiana and made all the
new friends we have.  She gave a talk at church last night on domestic
violence, and it was a real courageous thing for her to do, but it did
expel some of her demons.  I think her ministry is leading her in the
direction of helping women who are victims of domestic abuse.
 
Yes, by all means, dump the doubtful doc!  I'm off to IU Hospital next
Wed. for Grand Rounds to see what the docs there think.  The head of
derm. there, Dr. Travers, has taken me and my aliens on and said
he "wants to see me through this."  I'll keep you all posted.
 
Take care,
Judi
 
 
 
 
 
------------------------ Yahoo! Groups Sponsor --------------------~-->
Has someone you know been affected by illness or disease?
Network for Good is THE place to support health awareness efforts!
--------------------------------------------------------------------~->
 
 
Yahoo! Groups Links
 
<*> To visit your group on the web, go to:
 
<*> To unsubscribe from this group, send an email to:
 
<*> Your use of Yahoo! Groups is subject to:
 
 
 
 

#10251 From: "Denise and Barry West" <denbar@...>
Date: Thu Mar 31, 2005 10:39 pm
Subject: Re: Teddy - DD and the ADHD Kid
deniseheather53
Offline Offline
Send Email Send Email
 
ha ha ha  not only can you borrow it, you can keep it! 
 
-------Original Message-------
 
Date: 04/01/05 07:02:33
Subject: [Dercums_Disease] Teddy - DD and the ADHD Kid
 
Dear Teddy,

What an apt description for DD.... Can I borrow it? It is perfect. DD wants your attention right now!

Be well and take care. Use your spoons wisely.

Peace,
--
Dora
=============
Denise and Barry West wrote:
...This disease is like a kid with severe ADHD wanting sweets at the supermarket checkout!
regards Teddy
 

#10250 From: "nonny46" <nonny46@...>
Date: Thu Mar 31, 2005 9:38 pm
Subject: Welcome back, Jeannie
nonny46
Offline Offline
Send Email Send Email
 
Good to see you again.  I know, I've tried ignoring this disease
thinking it might go away, but, like Teddy says, like a kid with ADHD
or a 2-year old with a tantrum.  And believe me, I KNOW 2-year olds
with tantrums, got 3 of them (grandbabies) who have better manners than
DD.

I'm glad your daughter is home.  Sometimes I wish ours had never left
home, but then we wouldn't have moved here to Indiana and made all the
new friends we have.  She gave a talk at church last night on domestic
violence, and it was a real courageous thing for her to do, but it did
expel some of her demons.  I think her ministry is leading her in the
direction of helping women who are victims of domestic abuse.

Yes, by all means, dump the doubtful doc!  I'm off to IU Hospital next
Wed. for Grand Rounds to see what the docs there think.  The head of
derm. there, Dr. Travers, has taken me and my aliens on and said
he "wants to see me through this."  I'll keep you all posted.

Take care,
Judi

#10249 From: Dora Maillaro-Tomalonis <doramt@...>
Date: Thu Mar 31, 2005 9:02 pm
Subject: Teddy - DD and the ADHD Kid
doramtw3
Offline Offline
Send Email Send Email
 
Dear Teddy,

What an apt description for DD.... Can I borrow it? It is perfect. DD wants your attention right now!

Be well and take care. Use your spoons wisely.

Peace,
--
Dora
=============
Denise and Barry West wrote:
...This disease is like a kid with severe ADHD wanting sweets at the supermarket checkout!
regards Teddy

#10248 From: Dora Maillaro-Tomalonis <doramt@...>
Date: Thu Mar 31, 2005 6:21 pm
Subject: Re: Hello to all, happy birthday Dora! :)
doramtw3
Offline Offline
Send Email Send Email
 
Dear Jeannie,

I am glad that your daughter is home from Colorado. What a great Easter
present! To be honest, I would head to Colorado or New Mexico in a
heartbeat myself...except it's in the opposite direction from our
families who are in the northeast US. I hope her heart mends quickly the
farther away she is.

I wish you well on your journey to a diagnosis. I am glad that you are
going to give your PCP his walking papers. Any doctor unwilling to even
consider a disease that was discovered over a century ago as a reality
needs to have his head examined. I would send him a copy of the web site
at the bottom of my signature and let him know that the National Library
of Medicine at the National Institutes of Health at least acknowledge
the existence of Adiposis Dolorosa. And he can search the literature
from PubMed to find some stuff written on it. Better luck with the
surgeon and endocrinologist.

Thanks for the birthday wishes, everybody. It's been great fun. Be well
and take care. Use your spoons wisely.

Peace,
--
Dora Maillaro-Tomalonis
doramt@...
888-238-1929 (Voicemail/Fax)
586-945-4388 (cell)
-----------------------
The Spoon Theory
http://www.butyoudontlooksick.com/spoons.htm
----------------------
"The difference between the right word and the almost right word
is the difference between lightning and the lightning bug."
--Mark Twain
----------------------
Lipomas Can Hurt!
http://www.nlm.nih.gov/medlineplus/ency/imagepages/1209.htm

#10247 From: "feisty_in_yorks" <c_prentice2003@...>
Date: Thu Mar 31, 2005 6:16 pm
Subject: Standing etc......
feisty_in_yorks
Offline Offline
Send Email Send Email
 
Hi everyone .........

Getting better everyday now. Can sit up all day but lifting anything
light is still agony! I daresay I will heal in time to get back to
school after the holidays.

As for standing any length of time - it has been ages since I could
just stand (years in fact) - definitely at least 10  years. I have to
constantly shift around in class - then I pose my bum on someone's
desk for a while then I sit at my desk then I write a bit on the
board. At least like that I dont get stuck!!!! Yes Judi, I get stuck
if I sit down - feels like I've got that congenital hip displacement
thing that babies get - can't shut my legs ! (No rude comments
please) It  takes at least 5 minutes to get moving with an
approximately normal gait ! Then of course - I can't walk far - so I
have to sit down again. Try expalining the logic of that to someone
who does not want to understand what being mobility challenged is
like.

In fact, I did wonder whether this strange feeling I get in my wrist
bones and ankle bones has a name?? I feel as if the bones have been
taken out then shaken up in a bag and put back in randomly - not in
their correct position. It does not last long - but it is very
unpleasant. Anybody else get this ? The bones all kind of jangle
around then settle into their correct position !

Still enough ranting for tonight - I am going on to chat on Dercum's
Hope - anybody coming ?

A giant serving spoon for Amanda !

feisty xx

#10246 From: "Denise and Barry West" <denbar@...>
Date: Thu Mar 31, 2005 5:17 pm
Subject: Hi Jeanie
deniseheather53
Offline Offline
Send Email Send Email
 
Where is your leave pass?....been wondering how you were doing.  Sorry 'ol girl,  I tried the  ignore and it will go away thing, doesn't work.
This disease is like a kid with severe ADHD wanting sweets at the supermarket checkout!
regards Teddy

#10245 From: "Denise and Barry West" <denbar@...>
Date: Thu Mar 31, 2005 5:11 pm
Subject: Re: More on skeletal pain
deniseheather53
Offline Offline
Send Email Send Email
 
Hi Judi, this happens to me too, it makes my once fun day at the Rugby...intolerable also I find that if I sit in the car for too long it takes me a while to be able to walk with a correct gait  (a bit jerky and hobbly)  Xrays? yes...nothing.  Dishwashers are taking too darn long these days.
regards Teddy
 
 
 
 
 
 
-------Original Message-------
 
Date: 04/01/05 02:18:05
Subject: [Dercums_Disease] More on skeletal pain
 
 
Hello all,
 
I had an experience this morning, and it's not the first time it has
happened lately.  If I stand more than about 5 minutes, my hips and
legs get so painful, and lower back, that I have to sit down.  I
was "supervising" our son in law as he installed a new dryer vent
outside, and it was a good thing the patio door was open, because I had
to go in and sit down in the den a bit before I could go up the 4 steps
into the kitchen.  I was still really stiff and it felt like my legs
had been screwed too tightly into the hip sockets!  Now they're just
throbbing.  I guess this counts as skeletal pain?
 
Judi--sitting by the dishwasher waiting for spoons
 
 
 
 
 
------------------------ Yahoo! Groups Sponsor --------------------~-->
Has someone you know been affected by illness or disease?
Network for Good is THE place to support health awareness efforts!
--------------------------------------------------------------------~->
 
 
Yahoo! Groups Links
 
<*> To visit your group on the web, go to:
 
<*> To unsubscribe from this group, send an email to:
 
<*> Your use of Yahoo! Groups is subject to:
 
 
 
 

#10244 From: "jeannie_c85" <jeannie_c85@...>
Date: Thu Mar 31, 2005 4:57 pm
Subject: Re: More on skeletal pain
jeannie_c85
Offline Offline
Send Email Send Email
 
Judy, this sounds awful familiar to me. I can't stand for more then
a few minutes anymore either. I had to train a woman a few days ago,
she wanted to take pics of the lead we were building. Well, she
couldn't get the camera/microscope working and I was almost in tears
standing there waiting. I didn't let on, of course, but I tell ya,
it's no fun...at 43 this should not be a problem for me. :(
Well, I best get back to work, lots to do.

Take Care,
Jeannie

--- In Dercums_Disease@yahoogroups.com, "nonny46" <nonny46@y...>
wrote:
>
> Hello all,
>
> I had an experience this morning, and it's not the first time it
has
> happened lately.  If I stand more than about 5 minutes, my hips
and
> legs get so painful, and lower back, that I have to sit down.  I
> was "supervising" our son in law as he installed a new dryer vent
> outside, and it was a good thing the patio door was open, because
I had
> to go in and sit down in the den a bit before I could go up the 4
steps
> into the kitchen.  I was still really stiff and it felt like my
legs
> had been screwed too tightly into the hip sockets!  Now they're
just
> throbbing.  I guess this counts as skeletal pain?
>
> Judi--sitting by the dishwasher waiting for spoons

#10243 From: "jeannie_c85" <jeannie_c85@...>
Date: Thu Mar 31, 2005 4:54 pm
Subject: Hello to all, happy birthday Dora! :)
jeannie_c85
Offline Offline
Send Email Send Email
 
It's been a long time, hope you remember me. :) First I want to give
Amanda my thoughts and prayers. Man, you are one strong, couragous
woman! I bow to you. :o)  I don't know if I would have the guts to
do that. Many prayers going up for a fast recovery and that this
works wonderfully for you as it did for Teddy.
PS:  Teddy, don't feel left out hon, I bow to you too! :) It's great
to hear a success story about this surgery. I know i would be too
scared to do it, it's the one surgery I can't watch.

Hi Teddy! :)
Hi Judy :)
Hi Dorrit :)
Hi Jacki and Fiesty and well, everyone.....who am I kidding? I can't
remember everyone's screen names right now, forgive me.

Well, you know what I have decided? Finally? that I do indeed have
this dreaded disease. everything you talk about as far as symptoms
go I either have or am getting. And I'm non too happy, as you all
can relate to. Now to get my fat arse back in to the doc. oh and to
do the testing he wanting me to do months ago.

I may have to switch docs as mine didn't seem to think Dercums is a
real disease. (It's an internet phantom disease, don't cha know!)
But, with Amanda's permission I plan to print out the names of her
docs and hopefully, hopefully my doc will call one of them and learn
something of dercums.

Good news! I don't know if you knew this but my 18 year old daughter
moved to colorado last july to be with her "one and only 'love'"
Much to my disappointment. However, she is home now!! Yayyyyy :o)  I
am so so happy she got away from this guy! Now hopefully she will
start college and get her life started there!

Both my kids have been showing me lumps they are finding on
themselves. *sigh* A mother's nightmare for sure. :(  I am praying
they don't get them to the extreme I have them.

So, I am having good days and bad days. The trip from Minnesota to
Colorado was a long one. 5 days in the truck, luckily my hubby did
most all the driving and the truck was comfortable. But there was a
few times I was being stabbed by that red hot knife we all know so
well. I made it through ok tho and we got her all moved home.

Now, I'm back at work, trying to read up what I missed.

You all take care, I have you in my prayers, as always... I'll keep
you posted. I think it's time to dig out the referal to the
endocrinologist and surgeon and make those appointments once and for
all. If anything, I can start getting the new ones out from around
my elbows. I have to do something fast as my hands are starting to
fall asleep and my arms are tingling a lot. I need them steady and
fast for the extremely small microscope work I do.

Wish me luck. I keep keepin on. I keep hoping if I ignore this, it
will go away. so far it isn't working. *sigh*

Jeannie (jean at dercums hope)

#10242 From: "nonny46" <nonny46@...>
Date: Thu Mar 31, 2005 4:17 pm
Subject: More on skeletal pain
nonny46
Offline Offline
Send Email Send Email
 
Hello all,

I had an experience this morning, and it's not the first time it has
happened lately.  If I stand more than about 5 minutes, my hips and
legs get so painful, and lower back, that I have to sit down.  I
was "supervising" our son in law as he installed a new dryer vent
outside, and it was a good thing the patio door was open, because I had
to go in and sit down in the den a bit before I could go up the 4 steps
into the kitchen.  I was still really stiff and it felt like my legs
had been screwed too tightly into the hip sockets!  Now they're just
throbbing.  I guess this counts as skeletal pain?

Judi--sitting by the dishwasher waiting for spoons

#10241 From: "nonny46" <nonny46@...>
Date: Thu Mar 31, 2005 4:12 pm
Subject: Doorknobs
nonny46
Offline Offline
Send Email Send Email
 
For Kay and others--I have found a doorknob adapter that makes it
easier to open doorknobs.  If there is a place near you that sells
hospital equipment or aids for living (like jar grips, canes, etc.)
they might have one.  When I was still working at church, the doorknobs
at the office were giant-size and very thin and I couldn't open them,
but this helped.  I have put one on the door between our garage and
house as I was having trouble turning the knob.

My biggest trouble now is turning the key to start our van--they did
adjust it somewhat, but on days when my wrists are very swollen (like
today) I can't start the van myself, so have to have someone go with
me.  I went out one day last week, and had to ask the guy at the
grocery store to start my car for me!  We're planning on a new car next
year, and it will be easier to start.

We also invested $40 in an electric jar opener--what a help!

Judi

#10240 From: "Dorrit Hvam" <fiori68@...>
Date: Thu Mar 31, 2005 10:41 am
Subject: Amanda
fiori68
Offline Offline
Send Email Send Email
 
Dear Amanda,
I am not blaming you for what you did. I jumped into the same solution
out of panic, and originally I was told to have both legs done at the
same time. Luckily I denied that, and we never came round to the
second leg. But against that stands Teddy's experience that her full
body liposuction was a great help, and she would do it again, so I
guess the result is different for each individual, and the decision
about to do it or not is also a personal matter. I just feel I have to
tell my experience so that people have something from both angles.
Same thing about the lidocaine treatment. For me no result, a risk
taken, nothing happened to me, but I still think that it is necessary
that people know what they are up against.
You are well on the way to recovery now, but as you say, small parts
at a time would be better. But as I understadn the American insurence
system, it can also be a matter of money whether to have much or
little done at one time, and that's not a good thing.

Take care, and use the time necessary to recover.
Dorrit

#10239 From: <ToadHill@...>
Date: Thu Mar 31, 2005 2:57 am
Subject: Re: Pain in skeleton
contentefren...
Offline Offline
Send Email Send Email
 
Nope, I lean on the nearest thing, and thump the door with my walking stick. Skeletal pain for me is a part of it all .
I leave all of my doors unlocked now...and open..no choice...as I cannot turn the door knobs.
Kay~K
----- Original Message -----
Sent: Thursday, March 31, 2005 8:37 AM
Subject: [Dercums_Disease] Pain in skeleton


Hi
I was thinking about the question of pain in the bones. Are any of you
able to knock on a door, using your finger knuckles (if called so..)?
It would make me cry just thinking about trying. No way I could do
that.

Dorrit

PS. Something has changed. Now I do get the next message when I ask
for the next, instead of getting the previous one.





#10238 From: "Amanda Kreeb" <amandakreeb@...>
Date: Thu Mar 31, 2005 2:30 am
Subject: Re: Misc.
amandakreeb
Offline Offline
Send Email Send Email
 
Good Advice Dorrit -
   Unfortunately there is no quick or easy solution to pain
resolution - and often, it is easy to jump quickly into a proceedure
that may be risky and without positive results.  I once asked my
mother when I was a child..."Mom, how do you know what the right
decision is?"  I cannot trust my life or my health with a doctor -
but rather with God.  I pray that he leads me in a positive
direction and also that I would be receptive to his will - not
mine.  I am so terribly sorry to hear of your experience and if
perhaps I have appeared to advocate a full body liposuction
proceedure - let me clearly state that there are serious risks and
one of those being... zero results.  I face this reality myself as I
continue to recover.

If I had a choice, knowing what I know at this point, I would have
suggested that perhaps one/two body parts at a time was more
reasonable.  That way, you could clearly identify it's effectiveness
before moving forward.  Why do things happen the way they do? What's
the best way to do it?  Each of us can only answer that for
ourselves.  Your experience and input is so invaluable Dorrit.
Thank you for providing another perspective and opinion on such a
contraversial proceedure.

Sending you a spoonful of love,
Amanda

--- In Dercums_Disease@yahoogroups.com, "Dorrit Hvam" <fiori68@y...>
wrote:
>
> Hi Dora
> Happy birthday  - you are still only a kid - ha!
>
> Amanda
> I do hope that you will soon feel better, but I will be honest and
> say that I think those big liposuctions done on one day are just
> crazy, and much, much too risky! I am glad that you and Teddy did
> all right, but I will still speak against it, with the experience
of
> having only one leg done, and for no good.
> We have had a very "famous", money-hunting dr. here in Denmark who
> did those big liposuctions on people and did not care about the
> result. He is hiding (with his money) in some other country as
there
> has been a warrant against him for putting peoples lives at risk,
> and for cheating with his income taxes.
>
> Please be careful, girls, at what you are putting your bodies and
> health through.
>
> Dorrit
>
> Sending one of my handcraft made silver spoons, not polished in
> years though....

#10237 From: Dora Maillaro-Tomalonis <doramt@...>
Date: Wed Mar 30, 2005 11:51 pm
Subject: Re: Pain in skeleton
doramtw3
Offline Offline
Send Email Send Email
 
Dear Dorrit,

Thanks for your wishes, and I agree about being "just a kid." The last
couple of years made me wonder if I would see this birthday. I am glad
things have improved enough for me to be more hopeful about life in general.

I feel the same about rapping on something with my knuckles. My mother,
who has no arthritis, has used her wedding band as a knocker for years
so I just adapted a long time ago. For me, I know it is definitely my AS
(arthritis). Although, bumping into things ever so gently with a leg
makes me wince. I know that is from DD.

Be well and take care. Use your spoons wisely.

Peace,
--
Dora
=============
Dorrit Hvam wrote:

>
> Hi
> I was thinking about the question of pain in the bones. Are any of you
> able to knock on a door, using your finger knuckles (if called so..)?
> It would make me cry just thinking about trying. No way I could do
> that.
>
> Dorrit
>
> PS. Something has changed. Now I do get the next message when I ask
> for the next, instead of getting the previous one.

#10236 From: "Denise and Barry West" <denbar@...>
Date: Wed Mar 30, 2005 10:55 pm
Subject: Re: Re: Pain in skeleton
deniseheather53
Offline Offline
Send Email Send Email
 
Me too!          gentle tap with my shoe if no doorbell.
regards Toe Tappin' Teddy
 
-------Original Message-------
 
Date: 03/31/05 08:45:29
Subject: [Dercums_Disease] Re: Pain in skeleton
 
 
Dorrit,
 
Unless someone has a door knocker or doorbell, I let someone else do
the knocking--haven't been able to do that in a few years.  Maybe
arthritis?  Just know that it hurts...
 
Judi
 
 
 
 
 
 
------------------------ Yahoo! Groups Sponsor --------------------~-->
Dying to be thin?
Anorexia. Narrated by Julianne Moore .
--------------------------------------------------------------------~->
 
 
Yahoo! Groups Links
 
<*> To visit your group on the web, go to:
 
<*> To unsubscribe from this group, send an email to:
 
<*> Your use of Yahoo! Groups is subject to:
 
 
 
 

#10235 From: "nonny46" <nonny46@...>
Date: Wed Mar 30, 2005 10:45 pm
Subject: Re: Pain in skeleton
nonny46
Offline Offline
Send Email Send Email
 
Dorrit,

Unless someone has a door knocker or doorbell, I let someone else do
the knocking--haven't been able to do that in a few years.  Maybe
arthritis?  Just know that it hurts...

Judi

#10234 From: "Dorrit Hvam" <fiori68@...>
Date: Wed Mar 30, 2005 10:37 pm
Subject: Pain in skeleton
fiori68
Offline Offline
Send Email Send Email
 
Hi
I was thinking about the question of pain in the bones. Are any of you
able to knock on a door, using your finger knuckles (if called so..)?
It would make me cry just thinking about trying. No way I could do
that.

Dorrit

PS. Something has changed. Now I do get the next message when I ask
for the next, instead of getting the previous one.

#10233 From: "Dorrit Hvam" <fiori68@...>
Date: Wed Mar 30, 2005 10:33 pm
Subject: Misc.
fiori68
Offline Offline
Send Email Send Email
 
Hi Dora
Happy birthday  - you are still only a kid - ha!

Amanda
I do hope that you will soon feel better, but I will be honest and
say that I think those big liposuctions done on one day are just
crazy, and much, much too risky! I am glad that you and Teddy did
all right, but I will still speak against it, with the experience of
having only one leg done, and for no good.
We have had a very "famous", money-hunting dr. here in Denmark who
did those big liposuctions on people and did not care about the
result. He is hiding (with his money) in some other country as there
has been a warrant against him for putting peoples lives at risk,
and for cheating with his income taxes.

Please be careful, girls, at what you are putting your bodies and
health through.

Dorrit

Sending one of my handcraft made silver spoons, not polished in
years though....

#10232 From: "feisty_in_yorks" <c_prentice2003@...>
Date: Wed Mar 30, 2005 7:31 pm
Subject: Re: Hello Again !!
feisty_in_yorks
Offline Offline
Send Email Send Email
 
Hi Judi,

Thanks for your kind wishes....

As for compensation - I have a fat chance there - unless the unjury
goes into months and I sue the Local Council......

I will have some sick pay - but because of my illness that is running
out fast. We go into a new year of sickness benefit in April - but
only if I am back at work on the 1st of the month - otherwise I have
to count it as extended ffrom last year. I will go back because I
might need all the benefits I am allowed the way things are going at
the moment.

I hope Amanda is feeling a little better - I am shuddering at the
thought of what she has been through.......

Night all,

feisty

--- In Dercums_Disease@yahoogroups.com, "nonny46" <nonny46@y...>
wrote:
>
> Dear Feisty,
>
> It sounds like you could use a vacation at a nice spa!  Will your
> school pay for any expenses you have as a result of the fight?  I
would
> think, at least in the US, that it would be a "workman's
compensation"
> injury, and if you can't go back to work next week it is their
expense,
> not yours.
>
> I'm with you on the lipo--much as I would like to remove a bunch of
> these buggers at once, there are just too many now, and I don't
think
> that the doctors would consider it at this point, except for maybe
one
> section now, then another, etc.
>
> Will keep you in my prayers that you heal soon from this injury,
>
> Judi
> >
> >

#10231 From: "nonny46" <nonny46@...>
Date: Wed Mar 30, 2005 2:41 pm
Subject: Re: Hello Again !!
nonny46
Offline Offline
Send Email Send Email
 
Dear Feisty,

It sounds like you could use a vacation at a nice spa!  Will your
school pay for any expenses you have as a result of the fight?  I would
think, at least in the US, that it would be a "workman's compensation"
injury, and if you can't go back to work next week it is their expense,
not yours.

I'm with you on the lipo--much as I would like to remove a bunch of
these buggers at once, there are just too many now, and I don't think
that the doctors would consider it at this point, except for maybe one
section now, then another, etc.

Will keep you in my prayers that you heal soon from this injury,

Judi
>
>

#10230 From: "feisty_in_yorks" <c_prentice2003@...>
Date: Wed Mar 30, 2005 10:54 am
Subject: Hello Again !!
feisty_in_yorks
Offline Offline
Send Email Send Email
 
I am so sorry that I have not been up to posting to you all.......

I feel for Amanda in my deepest soul. What courage ! Like Dora - I
really do not think I could do it - but then I have very many more
lumps to contend with - easily in the hundreds ! And - worst of all -
very many more pounds to get rid of !

HAPPY BIRTHDAY DORA !!!!!! Lots of HUGE spoons to help you along and
to keep for emergencies !

To everyone else, I have been miserable - my back injury has
definitely been a badly torn muscle and I can really only sit for a
while before I have to lie down again - but then I can't lie down
because my back and lumps won't let me - talk about fidgeting all the
time !

I have been to both the Dermatologist and the Rheumatologist since I
posted last...... The Derm has made me an apointment with the Plastic
Surgeon for the life long task of surgical removel of the most
painful lumps. The Rheumatologist is testing me again for Lupus (got
the impression he was not so sure about his telling me that it was
not Lupus after all! ) He will not do any testing for AS until Lupus
is defnitely out of the picture - despite my very obvious back
movement becoming less and less mobile. Insists that I have
fibromyalgia as well as Dercums (he read all about that with
interest - but did not seem over-concerned) !!!! It is true that my
muscles hurt - but then so does everything else !

Have also been to the Pain Clinic where the Nurse has lent me a TENS
machine to try....... I am not exactly ecstatic about the results -
it is pleasant but no more......

All I can say is - Thank Goodness its Easter holdays over here !
There is no way I could go to work at the moment.......

Gentle and warm hugs to you all - I have been present in thought if
not in writing!

Amanda - Bon Courage !

feisty xx

#10229 From: Dora Maillaro-Tomalonis <doramt@...>
Date: Wed Mar 30, 2005 5:27 am
Subject: Amanda & Teddy
doramtw3
Offline Offline
Send Email Send Email
 
Dear Amanda & Teddy,

Both of you have my undying admiration. I can think of the worst sick
days when I wanted to crawl into a corner and die. The most recent ones
were when I had the huge lump removed from my right hip 3 years ago. I
know those days cannot be as bad as what you are describing.

Teddy, bless you for sharing hope for the future for Amanda. Amanda,
from what Teddy says, you have a few more days to get through. I know
you can make it. I am not sure I have the courage to do what you have done.

Be well and take care. Use your spoons wisely.

Peace,
--
Dora Maillaro-Tomalonis
doramt@...
888-238-1929 (Voicemail/Fax)
586-945-4388 (cell)
-----------------------
The Spoon Theory
http://www.butyoudontlooksick.com/spoons.htm
----------------------
"The difference between the right word and the almost right word
is the difference between lightning and the lightning bug."
--Mark Twain
----------------------
Lipomas Can Hurt!
http://www.nlm.nih.gov/medlineplus/ency/imagepages/1209.htm

Messages 10229 - 10258 of 29307   Newest  |  < Newer  |  Older >  |  Oldest
Advanced
Add to My Yahoo!      XML What's This?

Copyright © 2009 Yahoo! Inc. All rights reserved.
Privacy Policy - Terms of Service - Guidelines - Help