Still here...but not feeling well.  Sooo...I would guess this being the start of the American Holiday and Flu season everyone is either a bit under the weather or they have dinners, parties, school meetings,plays and holiday recitals to attend.  For those of us in school it is just past mid terms and time to cram for those final papers and tests.  And of course shopping...I hope all is well and I wish everyone of you a Happy and Healthy holiday season.

 

Yours in Strength and Weakness,

Denee

Denee Rodriguez M.T.F.
"Promise me you'll always remember:
 You're braver than you believe,
and stronger than you seem,
 and smarter than you think."
-Christopher Robin to Pooh

----- Original Message -----

From: echittick@...

To: Dercums_Disease@yahoogroups.com

Sent: Tuesday, November 24, 2009 4:03 PM

Subject: Re: [Dercums_Disease] Is everyone on a new site

 

I am not sure where everyone is all of a sudden there was no one emailing if you find out let me know vica versa!


Nov 24, 2009 11:37:22 AM, Dercums_Disease@yahoogroups.com wrote:

 

What happened to everyone? Are you all still out there?
I miss all of you.
Donna

 



Judi - thank you so much.  What a beautiful encouragement.  All I can say is Amen - and I want to jump in and say ditto too :)

 

Hugs.

Calle

----- Original Message -----

From: echittick@...

To: Dercums_Disease@yahoogroups.com

Sent: Wednesday, November 25, 2009 1:10 PM

Subject: Re: [Dercums_Disease] Thanksgiving wishes

 

Nov 25, 2009 10:06:15 AM, Dercums_Disease@yahoogroups.com wrote:

 

To all, even those in countries that do not celebrate Thanksgiving as we do!

May your homes be filled with warmth and joy, your tables laden with delicious (and healthy) food, and your hearts overflow with love. In spite of (and in some cases because of) DD, I have much to be thankful for.

Cheers!

Judi

 

Happy Thanksgiving to everyone!!

 

Purple Smiles

Denise

----- Original Message -----

From: Carole

To: Dercums_Disease@yahoogroups.com

Sent: Wednesday, November 25, 2009 11:35 AM

Subject: [Dercums_Disease] Thanksgiving

 

Happy Thanksgiving, everyone.

Carole

----- Original Message -----

From: Carole

To: Dercums_Disease@yahoogroups.com

Sent: Wednesday, November 25, 2009 11:35 AM

Subject: [Dercums_Disease] Thanksgiving

 

Happy Thanksgiving, everyone.

Carole

----- Original Message -----

From: echittick@...

To: Dercums_Disease@yahoogroups.com

Sent: Wednesday, November 25, 2009 1:10 PM

Subject: Re: [Dercums_Disease] Thanksgiving wishes

 

Nov 25, 2009 10:06:15 AM, Dercums_Disease@yahoogroups.com wrote:

 

To all, even those in countries that do not celebrate Thanksgiving as we do!

May your homes be filled with warmth and joy, your tables laden with delicious (and healthy) food, and your hearts overflow with love. In spite of (and in some cases because of) DD, I have much to be thankful for.

Cheers!

Judi

 

To all, even those in countries that do not celebrate Thanksgiving as we do!

May your homes be filled with warmth and joy, your tables laden with delicious (and healthy) food, and your hearts overflow with love. In spite of (and in some cases because of) DD, I have much to be thankful for.

Cheers!

Judi

 

Happy Thanksgiving, everyone.

Carole

Happy Thanksgiving, everyone.

Carole

To all, even those in countries that do not celebrate Thanksgiving as we do!

May your homes be filled with warmth and joy, your tables laden with delicious
(and healthy) food, and your hearts overflow with love.  In spite of (and in
some cases because of) DD, I have much to be thankful for.

Cheers!

Judi

----- Original Message -----

From: echittick@...

To: Dercums_Disease@yahoogroups.com

Sent: Tuesday, November 24, 2009 4:03 PM

Subject: Re: [Dercums_Disease] Is everyone on a new site

 

I am not sure where everyone is all of a sudden there was no one emailing if you find out let me know vica versa!


Nov 24, 2009 11:37:22 AM, Dercums_Disease@yahoogroups.com wrote:

 

What happened to everyone? Are you all still out there?
I miss all of you.
Donna

 

What happened to everyone? Are you all still out there?
I miss all of you.
Donna

What happened to everyone? Are you all still out there?
I miss all of you.
Donna

 

Hi Moira,

I'm not sure if it is the same, but I suspect it is at least the beginnings of Spondylolisthesis. You'd need to ask a doctor to be sure though.

Hugs and spoons,

Pamela

---

From: Moira Deans <mj.deans@...>
To: Dercums_Disease@yahoogroups.com
Sent: Wed, November 18, 2009 10:33:15 AM
Subject: Re: [Dercums_Disease] Re: Bone Structure

 

Hi

I have just found out that I have spinal problems,they were diagnosed in 2003 but the Drs  didn't tell me about them!

I managed to get access to some of my medical notes and found this in the report!

It said that I have generalised Osteopenia ,a moderate anterior wedge compression at T12,spondylotic change throughout lumbar spine particularly L5/S1 , anterior listhesis L4 on L5 ,as well as degenerative changes in my hip joints.

 

do you know if this is the same as spondylolisthesis?

My Dr has arranged a bone density scan to see if I have now got Osteoporosis, as I wasnt put on any supplements to prevent this
and I also want to get as much evidence of Dercums before I see the specialist in December as I am now totally convinced that I have it,so many of my problems seem to be the same as those of you who have the disease confirmed.

I  am also having an MRI scan as my Dr wants to see if any of the Lipomas are infiltrating my organs and causing the eatig problems ,although Im not sure that they will show up on the scan!

Any way hope everyone is as well as they can be

love Moira

---

Fr

 

I was doing well for several days, not a lot of pain and very clear headed but a great deal of stress with my boyfriend and his

mother's cancer has just knocked me out and the damp weather has done me in. Back on antibiotics, temp was over a hundred on thursday

when I saw the doctor.

Suzi

---

From: Myoken 3 <myoken3@...>
To: Dercums_Disease@yahoogroups.com
Sent: Fri, November 13, 2009 11:05:27 PM
Subject: Re: [Dercums_Disease] Re: where is everyone?

 

 

Hello Judi,

it is so good to read you....I wondered how you and Ron were...just lovely to hear that you are okay.

And you are so right DD does affect us all differently, As you know there are six living members of my family that suffer from DD...they certainly do react to DD and all of it,s hassles in many different ways..but in general enjoy life for what it is.

 

 

I have been travelling around this incredible country of mine and enjoying it a lot,we tow a fifth wheeler caravan and sleep in it along the track,s also preparing meals in it.

I do believe that folk in America actually live in fifth wheelers ....this one is quite comfortable so I imagine it would not bee too hard to live in....here in Oz retired folk like ourselves buy them to have a travelling holiday.

 

I have seen such fabulous sights....can you imagine eating breakfast with young wallabies or kangaroos watching you!..it is almost blissful in the peace we have.

We recently had to stop for a while as my hubby had prostate cancer...then suffered a heart attack.

My daughter had a heart attack the same day,...and they finished up in the same intensive coronary care ward, it was difficult but our sons flew up from the eastern states to be with us, that helped so much.

We had just begun to travel again when my brother Peter had another massive stroke....he is a terrific fellow, and will come out of this okay , or as well as we expect...I love him so much'

 

So now we are on the road again next Tuesday...we wil travel across South Australia, to get to Western Australia... .......I am really looking forward to it , we have allready seen South Australia , but it is too hot to take the usual track across the top of Oz...and it is monsoon time up there, so we will go to the Northern

Territory in winter

 

I usually hate cooking with a vengeance , but just do it anyway....o have found that I am quite liking it whilst on this huge trip of hubbys and mine........ .it is great fun to go to the different villages etc and see what type of vegetables and fruit they have to sell......we have found that the beef and lamb is best in Victoria as a whole, and the pork is best in Queensland.. ;-)))

 

We continue to meet lovely other grey nomads along the track....with whom we  have a lot in common...we have had some lovely evenings around the campfire telling old stories and jokes....

 

Hubby has gone fishing at every river we see and beach ( there are many) but as yet has not caught a fish !!!

So much for seafood in the diet..lol.

 

There is truly too much to tell for me to relate it here....but we are certainly enjoying our travels as DD takes a back seat .

 

Must tell you all that I have another great grandchild!! A boy by the name of Cody! Super stuff...he is such fun.

 

Okey dokey ..I wish yourself and Ron good cheer...and hope that everyone here is feeling more chipper as the days go by.

 

Sending much care to all.

Cheers!

Kay~K.,

 

 

 

 

 

----- Original Message -----

From: nonny46

To: Dercums_Disease@ yahoogroups. com

Sent: Tuesday, November 10, 2009 11:10 AM

Subject: [Dercums_Disease] Re: where is everyone?

 

Hello everyone,

I'm still around, just trying to keep up with the demands of life. Donna, I'm 63, and have had this probably most of my adult life, only found out what it was about 8 years ago. My husband has Parkinson's, but it is managed by medication and the deep brain stimulation he had 3 years ago. We golf, take short walks, and just started a "range of motion" class in the pool last week. We're active in our church, read a lot, and I do crafts--crocheting prayer shawls and making blankets for church, scrapbooking, photography, writing.

We all react differently to this disease, so don't give up hope. I had over 30 lipomas removed, but stopped that about 2 years ago--the beasties just kept coming back. I understand about the leg pain--I use a barstool (padded) for bigger cooking projects. We live in an apartment--no stairs, laundry 3 feet from the bedroom, no yard work or snow shoveling (we live in northern Illinois.)

Your cane is named Harold? That's clever! I never thought of naming mine, but I'll have to think up a clever name. I just call if "my balance stick."

Cheers!
Judi

--- In Dercums_Disease@ yahoogroups. com, Donna Ross wrote:
>
> I don't post very often but I always read them. I have not been doing good lately. I am seeing a doctor today to see what they can do for the pain. I am 69 and getting really tired of dercums. I fall a lot because of the lipomas in my left leg that they say they can't take out because it would make it worse. Every time I fall new lipomas grow. I use a cane ( Harold ) when I go to town, but not at home. We live in the country. I still do some yard work, I love flowers and clean house but not like I use to. My husband does most of the cooking. I find it hard to stand in one place very long. I didn't even decorate for Halloween this year. The pain just never stops. I guess this is it, you just keep getting worse, then what do you do?
> I have had dercum's for years and could manage but not with the way it is now.
> Donna
>

 



E,

 

I too was weak as a child I could never do that bridge exercise where you lay on the floor and lift your body up with your hands and your feet and you are shaped like a u or a rainbow. I also had problems with my left leg tiring fast but never really worried about it until now as I am looking back to see how this disease may have been with me in childhood. I was the opposite of you I always sweat just like my grandmother and all 3 of her sisters even in the winter. My grandmother would wear a sleeveless shirt in the winter in New York in December!! That I did ask my doctor about and all they said was that instead of peeing alot I sweat alot. I took salt tablets I watched my fluid intake and nothing helped and still to this day I sweat terribly.I have parts of my body that you can't even brush up against me because it is so painful and it is the fat PAINFUL FAT wether anyone wants to believe us or not. My ribs, my sides, my thighs, my legs and my feet hurt to be touched most of the time!! I too suffer with arthritus I know in my hands and feet. My knees and inner thighs are also very painful and again my Grandmother and all 3 of her sisters had their knees replaced and 3  of them had it done more that once to each knee and they all still had constant problems with their knees all are deceased now and were before I even knew of this disease. I think I have an intresting family background if we ever find anyone willing to listen.

 

Purple Smiles

Denise

----- Original Message -----

From: echittick@...

To: Dercums_Disease@yahoogroups.com

Sent: Wednesday, October 14, 2009 5:09 PM

Subject: Re: Re: [Dercums_Disease] Pain Threshold

 

  they don't believe that we are in pain, that it is not in our head so they don't want to listen and be bothered. That is why when I found out about the disease I sent it to my doctor highlightening the part that stated type 3 in or types that affected individuals who are not obese. I also pulled out articles stating that that it could occur in chilhood, that it affects everyone not just obese and it not heridatary as others believe. then I made appt with dermatology because I need proof my self I told he where my pain was that she could remove the areas where she felt nodules or bumps. when she did the biopsy after the soreness went away I felt relief on the side of my leg that I had believed was hip arthritis even though nothing showed I has arthritis the pain from my hip to knee was bad difficulty walking, after the biopsy I didn't hav the pain there and I had al little relief with my thigh but my general surgeon would not remove any but said I had lipomatosis everywhere in my thigh along the obturator I believe he said with lipomas but that he did not remove them for pain that more would grow and I'd have nasty scars. he said they shouldn't cause that much pain but he never heard of Dercum's either. so when I go to the dermatology surgeon to have them removed as many as I can I will have him read of dercum's, add the diagnosis for insurance so that it is considered anytime as being cosmetic and see if he will help me chart the locations of the disease. the areas.  hope he is interested in it. I would like also to see if he would be willing to learn and do an article for the paper with me letting others know about the disease. in the future. I would also like to se if as the disease progresses if whe can work as a team with pain management, dermatology maybe endocrinologist, nutritionist. orthopedic, maybe neurologist in place  to help treat the disease. I hope that I can find doctors who accept my disease, believe in it and maybe gett funding to help the body not just one part of it. E

----- Original Message -----

From: echittick@...

To: Dercums_Disease@yahoogroups.com

Sent: Wednesday, October 14, 2009 5:09 PM

Subject: Re: Re: [Dercums_Disease] Pain Threshold

 

  they don't believe that we are in pain, that it is not in our head so they don't want to listen and be bothered. That is why when I found out about the disease I sent it to my doctor highlightening the part that stated type 3 in or types that affected individuals who are not obese. I also pulled out articles stating that that it could occur in chilhood, that it affects everyone not just obese and it not heridatary as others believe. then I made appt with dermatology because I need proof my self I told he where my pain was that she could remove the areas where she felt nodules or bumps. when she did the biopsy after the soreness went away I felt relief on the side of my leg that I had believed was hip arthritis even though nothing showed I has arthritis the pain from my hip to knee was bad difficulty walking, after the biopsy I didn't hav the pain there and I had al little relief with my thigh but my general surgeon would not remove any but said I had lipomatosis everywhere in my thigh along the obturator I believe he said with lipomas but that he did not remove them for pain that more would grow and I'd have nasty scars. he said they shouldn't cause that much pain but he never heard of Dercum's either. so when I go to the dermatology surgeon to have them removed as many as I can I will have him read of dercum's, add the diagnosis for insurance so that it is considered anytime as being cosmetic and see if he will help me chart the locations of the disease. the areas.  hope he is interested in it. I would like also to see if he would be willing to learn and do an article for the paper with me letting others know about the disease. in the future. I would also like to se if as the disease progresses if whe can work as a team with pain management, dermatology maybe endocrinologist, nutritionist. orthopedic, maybe neurologist in place  to help treat the disease. I hope that I can find doctors who accept my disease, believe in it and maybe gett funding to help the body not just one part of it. E

----- Original Message -----

From: nonny46

To: Dercums_Disease@yahoogroups.com

Sent: Tuesday, November 10, 2009 11:10 AM

Subject: [Dercums_Disease] Re: where is everyone?

 

Hello everyone,

I'm still around, just trying to keep up with the demands of life. Donna, I'm 63, and have had this probably most of my adult life, only found out what it was about 8 years ago. My husband has Parkinson's, but it is managed by medication and the deep brain stimulation he had 3 years ago. We golf, take short walks, and just started a "range of motion" class in the pool last week. We're active in our church, read a lot, and I do crafts--crocheting prayer shawls and making blankets for church, scrapbooking, photography, writing.

We all react differently to this disease, so don't give up hope. I had over 30 lipomas removed, but stopped that about 2 years ago--the beasties just kept coming back. I understand about the leg pain--I use a barstool (padded) for bigger cooking projects. We live in an apartment--no stairs, laundry 3 feet from the bedroom, no yard work or snow shoveling (we live in northern Illinois.)

Your cane is named Harold? That's clever! I never thought of naming mine, but I'll have to think up a clever name. I just call if "my balance stick."

Cheers!
Judi

--- In Dercums_Disease@yahoogroups.com, Donna Ross <irakel2@...> wrote:
>
> I don't post very often but I always read them. I have not been doing good lately. I am seeing a doctor today to see what they can do for the pain. I am 69 and getting really tired of dercums. I fall a lot because of the lipomas in my left leg that they say they can't take out because it would make it worse. Every time I fall new lipomas grow. I use a cane ( Harold ) when I go to town, but not at home. We live in the country. I still do some yard work, I love flowers and clean house but not like I use to. My husband does most of the cooking. I find it hard to stand in one place very long. I didn't even decorate for Halloween this year. The pain just never stops. I guess this is it, you just keep getting worse, then what do you do?
> I have had dercum's for years and could manage but not with the way it is now.
> Donna
>

 

Kathie,
It does take quite a while to get an appointment but it is worth the wait. You may want to do a phone consultation first and the set an appointment if she needs to see you. I don't think she can diagnose over the phone, but she should be able to get you started on the right track.
Pamela

Sent via BlackBerry from T-Mobile

---

From: Kathie Henton <ksborderqueen@...>

Date: Mon, 9 Nov 2009 16:33:22 -0800 (PST)

To: <Dercums_Disease@yahoogroups.com>

Subject: [Dercums_Disease] Appointment with Dr. Herbst

 

I've been trying for the past 6 months or so to make an appointment to see Dr. Herbst in California.  The first time, I had not registered and been assigned a medical record number so I had to do that first.  Since I have done that, they are booked up to the point they can schedule.  I was told today to call after the first of the year.   Is that what you that have been to see her experienced?   I have corresponded with her since 2007 and she answered so many of my and my doctors' questions, she is a blessing!   Maybe a phone consultation would be easier.  Has anyone scheduled one?

 

Kathie,
It does take quite a while to get an appointment but it is worth the wait. You may want to do a phone consultation first and the set an appointment if she needs to see you. I don't think she can diagnose over the phone, but she should be able to get you started on the right track.
Pamela

Sent via BlackBerry from T-Mobile

---

From: Kathie Henton <ksborderqueen@...>

Date: Mon, 9 Nov 2009 16:33:22 -0800 (PST)

To: <Dercums_Disease@yahoogroups.com>

Subject: [Dercums_Disease] Appointment with Dr. Herbst

 

I've been trying for the past 6 months or so to make an appointment to see Dr. Herbst in California.  The first time, I had not registered and been assigned a medical record number so I had to do that first.  Since I have done that, they are booked up to the point they can schedule.  I was told today to call after the first of the year.   Is that what you that have been to see her experienced?   I have corresponded with her since 2007 and she answered so many of my and my doctors' questions, she is a blessing!   Maybe a phone consultation would be easier.  Has anyone scheduled one?

Sent via BlackBerry from T-Mobile

 

My doctor just started me on Lyrica for pain. We are hopeful because it has been used for nerve pain. This drug was added to the many others that I take now.
I am now taking the following:
Lyrica
Doxycycline (because of Dr. Herbst)
Nortriptyline
Fluoxetine
Nexium
Estradiol
Vicodin
Tramadol
Senna
Omega-3
Centrum Slver (Dr. Herbst)
Hydrochlorathiazide
HCSE (Dr. Herbst)
CoQ10 (Dr. Herbst)
Probiotics (Dr. Herbst)

I am also following a vegetarian/organic diet (Dr. Herbst)

Hello everyone,

I'm still around, just trying to keep up with the demands of life.  Donna, I'm
63, and have had this probably most of my adult life, only found out what it was
about 8 years ago.  My husband has Parkinson's, but it is managed by medication
and the deep brain stimulation he had 3 years ago.  We golf, take short walks,
and just started a "range of motion" class in the pool last week.  We're active
in our church, read a lot, and I do crafts--crocheting prayer shawls and making
blankets for church, scrapbooking, photography, writing.

We all react differently to this disease, so don't give up hope.  I had over 30
lipomas removed, but stopped that about 2 years ago--the beasties just kept
coming back.  I understand about the leg pain--I use a barstool (padded) for
bigger cooking projects.  We live in an apartment--no stairs, laundry 3 feet
from the bedroom, no yard work or snow shoveling (we live in northern Illinois.)

Your cane is named Harold?  That's clever!  I never thought of naming mine, but
I'll have to think up a clever name.  I just call if "my balance stick."

Cheers!
Judi

--- In Dercums_Disease@yahoogroups.com, Donna Ross <irakel2@...> wrote:
>
> I don't post very often but I always read them. I have not been doing good
lately. I am seeing a doctor today to see what they can do for the pain. I am 69
and getting really tired of dercums. I fall a lot because of the lipomas in my
left leg that they say they can't take out because it would make it worse. Every
time I fall new lipomas grow. I use a cane ( Harold ) when I go to town, but not
at home. We live in the country. I still do some yard work, I love flowers and
clean house but not like I use to. My husband does most of the cooking. I find
it hard to stand in one place very long. I didn't even decorate for Halloween
this year. The pain just never stops. I guess this is it, you just keep getting
worse, then what do you do?
> I have had dercum's for years and could manage but not with the way it is now.
> Donna
>

My doctor just started me on Lyrica for pain. We are hopeful because it has been
used for nerve pain. This drug was added to the many others that I take now.
I am now taking the following:
Lyrica
Doxycycline (because of Dr. Herbst)
Nortriptyline
Fluoxetine
Nexium
Estradiol
Vicodin
Tramadol
Senna
Omega-3
Centrum Slver (Dr. Herbst)
Hydrochlorathiazide
HCSE (Dr. Herbst)
CoQ10 (Dr. Herbst)
Probiotics (Dr. Herbst)

I am also following a vegetarian/organic diet (Dr. Herbst)

----- Original Message -----

From: jazmine_katz

To: Dercums_Disease@yahoogroups.com

Sent: Friday, November 06, 2009 12:22 PM

Subject: [Dercums_Disease] Dr. Herbst Website

 

Has anyone seen lipomadoc.org lately? It has changed. The home page
now shows a picture of Dr. Herbst and only text from her intro. The
other info is gone at the present time. Someone must be working on it.
Hey Nomad Eclipse would that be you Rodney? :)

I'm hanging in, but sooooo tired and painnnnn. Lot's of wild weather
and like others have said, the new moon. Into winter. Not good for me.

Hugs to all

Teri