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#26843 From: Dercums_Disease@yahoogroups.com
Date: Mon Dec 1, 2008 8:26 am
Subject: File - GHN - Group Guidelines & Rules of Netiquette.htm 		Dercums_Disease@yahoogroups.com
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Global Health Network

 

http://www.GlobalHealthNetwork.org

 

Group Guidelines and Rules of Netiquette



The Group owners/moderators will enforce these guidelines!

 

The Global Health Network support group community gives persons affected by various diseases or disorders, family members, friends and medical professionals a place to meet, interact, and share ideas with each other. Just like a real community, you may have different opinions than other group users. Our Group experience is best when people remember a few rules. Herein, we have set out guidelines and Rules of Netiquett for participation in our group.  Here are some of the key things to remember:

  1. You may not harass, abuse, threaten, or advocate violence against other members or individuals or groups.
  2. You may not post content that is harmful to minors.
  3. You may not post content that is obscene, otherwise objectionable, or in violation of federal or state law. 
  4. You may not add members to a group without their permission. 
  5. You may not use the group for commercial or advertising purposes.
  6. You may not post content which infringes the intellectual property, privacy or other rights of third parties.
  7. Some content may be more appropriate in some contexts than others. We reserve the right to remove content that it determines deemed to be inappropriate and in violation of our rules.
  8. You may not use the group solely for the purpose of storing and archiving files.

If you are unsure whether your content is consistent with these policies, please err on the side of caution and do not post it!

NOTE: In the beginning, posts will be moderated to ensure adherence to the group Guidelines and Rules of Netiquette.

Our Right to Terminate Group Membership.

The group owner(s) and or moderator(s), in their sole discretion, may terminate or remove any content or your membership immediately and without notice if (a) it is believed that you have acted inconsistently with the spirit or the letter of the group, the group’s guidelines, or (b) believed you have violated or tried to violate the rights of others. Please help us keep our group an enjoyable and positive experience. If you see a post that violates our rules, please let us know by contacting David Hughes at dhhughes@....

 

Read on for Group Rules of Netiquett!

 

Rules of Netiquette

Joining a List/Discussion Group

  1. When you join a list, save your introductory welcome message! Welcome messages generally contain important information about the group -- the rules and guidelines, instructions on how to post to the group, how to subscribe, how to unsubscribe, etc. Follow any and all guidelines that the list owner has posted. The list owner establishes the local "netiquette" standards for her/his list and retains the right to deny access to the group for those violating the rules.
  2. When you join a list, monitor the messages for a few days (or read through the list archives, if available) to get a feel for what common questions are asked, and what topics are deemed off-limits. This is commonly referred to as lurking. When you feel comfortable with the group, then start posting.
  3. See if there is a FAQ (Frequently Asked Questions) – for a group that you are interested in joining. Veteran members get annoyed when they see the same questions every few weeks, or at the start of each semester.   Our group does have a FAQ page available in the database.
  4. Use your own personal Email account; don't subscribe using a shared office account. There are many free email websites out there -- Yahoo!, Hotmail, etc. - you may find it useful to use one of these type of accounts for all of your list mail. Also turn off any Auto-Responders - they create extra mail for people posting to the list and can cause people to stop posting.

Posting - General Tips

  1. Keep your questions and comments relevant to the focus of the discussion group.
  2. Do not post in ALL CAPS. Capitalize words only to highlight an important point or to distinguish a title or heading. *Asterisks* surrounding a word also can be used to make a stronger point. Capitalizing whole words that are not titles is generally termed as SHOUTING!
  3. Do not send "Me Too!", "Thank You", etc. messages to the group! Send those directly to the original poster. A private "Thank You" is nicer too!
  4. Do not send attached files. If you have a file that you want to share, advertise that you have them available and those who are interested can request them via private e-mail off list.
  5. Do not send SPAM. SPAM includes virus warnings, get-rich-quick schemes, secret cookie recipes, political propaganda, and chain letters (i.e. Pass this letter on to 10 people to have “Good Luck”). Most of these are hoaxes and are not welcome on mailing lists. They only serve to irritate people.   Definition of Spam:   It is unsolicited.  It is part of a “mass mailing or the sender is a stranger to the recipient.  (The recipient has never had a willful personal contact with the sender.)
  6. Try to read through the day's messages before responding so that twenty people don't end up answering the same question. Keep the messages that you think you'd like to respond to and delete the others. Then go back through and begin your replies. If you can, put your replies all in one post (known as combining posts).
  7. Do not send or forward personal email to a list or another person without permission.  This is a copyright violation and a serious breach of privacy and you may be removed from a list for doing so.
  8. When going away for more than a week, unsubscribe or suspend mail from any mailing lists or LISTSERV services. Directions for how to do that should have been included in the introductory welcome message that was sent to you went you subscribed.
  9. When replying to a message posted to a discussion group, check the address carefully to be certain it's going to the intended location (person or group). It can be very embarrassing if you reply incorrectly and post a personal message to the entire discussion group that was intended for an individual.
  10. Use discretion when forwarding a long mail message. It's preferable to reference the source of a document and provide instructions on how to obtain a copy. If you must post a long message, warn the readers with a statement at the top of the mail message. Example: WARNING: LONG MESSAGE
  11. Resist the temptation to "flame" others on the list. Flaming is the act of responding in a highly critical, sarcastic, or ridiculing manner - especially if done on a personal level. Remember that these discussions are "public" and meant for constructive exchanges. Treat the others on the list as you would want them to treat you.
  12. Do no send "unsubscribe" requests to the list. Other people on the list are not interested in your desire to be added or deleted. Any requests regarding administrative tasks such as being added or removed from a list should be made to the appropriate area, not the list itself. Refer to your introductory welcome message for instructions on how to unsubscribe or change your subscription settings. You were able to subscribe on your own, you should be able to unsubscribe on your own as well.
  13. Don't feel obligated to send a personal introduction or biography to the list when you first join unless the list guidelines specifically request that you do so. However, if someone does post a message of this type, it's OK if current members wish to welcome these people into the group and make them feel at home. Doing this on low volume lists helps to stimulate conversation. On high volume lists though, it is suggested that these people be welcomed using their private email address rather than have several welcome messages cluttering up group related discussions.

Posting - Subject Lines

  1. Be sure the subject line reflects the topic. In other words, don't auto-reply and start a new thread leaving the old subject line in the header. This of course, providing that your software will allow you to change the subject. (I don't know of any email program that *doesn't* allow it.)
  2. Put your entire comment in the body of the message. Don't begin your message with a few words in the Subject line and continue in the body of the message. That leads to discontinuity of the message and defeats the purpose of the Subject Line.
  3. If you receive your list mail in Digest form, change the subject line to appropriately reflect the topic of your post. A subject of "Re: Digest xxx" helps no one.

Posting - Quoting

When quoting another person, edit out whatever isn't directly applicable to your reply. Don't let your mailing software automatically quote the entire body of messages you are replying to when it isn't necessary. Take the time to edit any quotations down to the minimum necessary to provide context for your reply. Nobody likes reading a long message in quotes for the third or fourth time, only to be followed by a one line response: "Yeah, me too."

What does quoted text look like? Email programs can display quoted text in a variety of ways, but the most common is for each line of text to be preceded by the "greater than" symbol (>).

> This is quoted text

Some email programs will simply add the line "--- Original Message ---" (or something similar) to the top of the previous message with the expectation that you will type your reply above that. While this style of quoting is okay in a business situation -- that is, when you are having a discussion with a co-worker and would like to keep the entire message thread within each email -- it is definitely NOT okay when using discussion lists, as it only serves to make the mail difficult to read. If you are using an email program that quotes in this fashion, you will need to manually create your quoted text. The simplest way to do this is to edit out the text you don't want and add two slashes ("//") to the beginning and ending of the text you'd like to quote.

//This is also quoted text//

The number one rule of quoting is quote judiciously. Quote only what is essential to make it possible for the reader to understand what your posting or email message is about. As a rule avoid quoting an entire message (signatures and all). It is not judicious to quote, say, a hundred lines of discussion just to input a single line of one's own. Proper quoting is a skill. Please devote some time to working the quote appropriately. Don't be lazy in this respect.

Leave a blank line between the quoted text and your reply or else your text and the quoted text will difficult to distinguish from each other.

Where is the best place to put your reply? Above or below the quoted text?

BELOW! Some more recent standard email and newsreader programs have assumed a very problematic feature. They include the message which you are responding to below your message and expect you to type your reply above it. Don't allow that to happen! The proper order is

>Quote 1 (properly pruned)

Your response 1

>Quote 2 (properly pruned)

Your response 2

In other words, put each appropriately trimmed item that you choose to quote before each of your own comments respectively. Remove any remaining "post quoting." Let me emphasize. Do not leave the entire earlier posting, which you have been responding to, at the end of your own posting.

Answering above the original message is called top posting. This is sometimes, called “The Jeopardy Style.”  Discussion groups are Q & A not A & Q.

These things SHOULD NEVER be in quoted messages:

  1. Headers or any Subject, Date, From, Reply-To, To, information, nor any general salutations.
  2. Entire posts! Keep your quoted lines down to 4-6 for each different issue you are addressing.
  3. Widowed quote lines. This means a line consisting of only one word getting stuck between two regular length lines of quoted text. You make the digest listing TWICE as long when you allow that. If the quoted material comes out with an orphaned word, take the time to move everything around so there aren't a bunch of holes in your post. Often this is a problem with keeping the font for your mail program too low. Please change to a bigger font size if your quotes are producing orphaned words.
  4. Sig lines, signature text, ads or footers from previous posts (you know, like the ones that tell you how to unsubscribe or how to contact the list owners, etc.)

Posting - How Do I Edit My Messages?

Help! I've been asked to "edit my messages" but I don't know how!

We were all new once, so don't let it bother you that you don't know how to edit. :) Editing a message is very easy. With a little practice, you'll wonder how you ever got along without it!

When you are replying to a post, hit the REPLY button just as you have been doing. Hitting the REPLY button will include the entire OLD message in the NEW message you are creating. The goal of "editing" your message is to get rid of any information from the previous post that you don't need in order for your reply to make sense.

To edit, put your cursor at the top left of the section you DON'T want to include (for example the To/From/Subject stuff or the message footers and people's signature lines. Click and hold the left mouse button and drag across the section to highlight it. Then hit both the delete key and the space bar or enter key (whatever is comfortable for you) and it will remove the unwanted section. If you accidentally remove more than you intended, go to the menu bar at the top of the screen, look under EDIT and click on "Undo".... then start again. 'Undo' is also available from the menu that pops up when you right click on the mouse. Or pressing the CTRL button along with the Z button will also "undo" the last action.

Also, when you are replying to different portions of a previous message, it is normal procedure to skip to the different portions you are replying to using the "question, answer, question, answer" format discussed in the previous section. Just make sure you hit the Enter key to leave a space after the quoted text and include your comments below that section of the message so that people can tell where the quoted text ends and your replies begin. It makes it so much easier for everyone to understand what you are replying to.

You might be wondering why we ask people to please edit their messages. There are many reasons to dislike excessive quoting. The most common are:

1.      Some people are visually handicapped and use "screen readers"

2.      Some people pay for their download/transfer usage or pay for their time online on a per-minute or per-hour basis.

3.      It clutters up the Digests and makes them darn near impossible to read.

4.      It makes it more difficult to follow the discussion. If your reply looks like it's part of the quoted portion, it can easily be missed. Also, if you don't include *any* quoted material, your reply won't make any sense to anybody. But most importantly,

5.      The List Mom doesn't like unedited posts. Can we say "pet peeve?" :)

ACRONYMS/SHORTHAND

Internet users in general have developed their own shorthand for e-communications. There is a comprehensive list of e-shorthand and emoticons (those little smiley faces made up of keyboard characters to indicate emotion) that can be found at the website here: http://www.stevegrossman.com/jargpge.htm

Another smaller, yet Early Edition skewed list can be found here: http://www.geocities.com/Hollywood/Makeup/3281/acronym.htm

For anything not covered in either of those sites, the general thing to keep in mind is that fans of a particular series will most often make acronyms out of the episode titles (DWAR for "Don't Walk Away Renee," etc.), out of the character names (GH for Gary Hobson), or out of the actor names (FS for Fisher Stevens). Keep those things in mind, and you shouldn't have any troubles.

Some commonly used acronyms/emoticons include:

LOL = Laughing out Loud
ROFLOL = Rolling of Floor Laughing out Loud
TPTB = The Powers That Be
TIIC = The Idiots In Charge
OT = Off Topic
TAN = Tangent
IMO = In My Opinion
IMHO = In My Humble Opinion
YMMV = Your Mileage May Vary
<g> = grin
<G> = big grin
<eg> = evil grin

Acknowledgements:

Information contained in this email netiquette document has been culled from various sources. The list below contains some of those sources as well as other informative documents on Netiquette and proper quoting techniques. I recommend reading them all too thoroughly familiarize yourself with the process. Many of them are geared towards Usenet users, but the principles are the same.

ListManager's FAQ Page with section on "How Do I Edit?" - geared towards Onelist/eGroups/YahooGroups users.

Quoting Text in Replies from the news.newusers.questions FAQ.
A bit more on the Netiquette and quoting by John Corliss.
Quoting from Zen and the Art of the Internet.
Trim down your quotes in Email Group Netiquette Guidance
Email Quotes and Inclusion Conventions
Quoting in JafSoft Limited's Introduction to the Internet
Proper quoting Alex D. Baxter
The Basic Rules of Netiquette; search for "Quoting"
On netiquette by Julie Waters; search for "Quoting".
Email Netiquette by Randy Ryan
http://www.ultranet.com/~mobius/Roadmap/map07.html
http://www.geocities.com/CapitolHill/1236/nomime.html
http://www.uwasa.fi/~ts/http/quote.html
http://www.uwasa.fi/~ts/http/tsfaq.html
Configuring Mail Clients to Send Plain ASCII Text from G. Boyd

This document, as well as the complete "Early Edition Lovers" list rules can be found at: http://groups.yahoo.com/group/earlyedition/files/EEL_Rules_and_Guidelines/

Note: You *must* be a member of the list and have already converted/merged your account with a Yahoo! ID in order to have access to the files area on the list's website. If you haven't already merged your account, go to http://groups.yahoo.com/convwiz and follow their directions. Then go back to the list's main page (http://groups.yahoo.com/group/earlyedition) and make sure you're signed in.

This document is: http://earlydues.usanethosting.com/ieel/netiquette.htm
Last Messed With: August 13, 2004


Reply | Forward | Messages in this Topic (51)
#26842 From: Karen Krzeminski <kamperk06@...>
Date: Sun Nov 30, 2008 8:29 pm
Subject: RE: Mammogram findings. 		aqua12062
Offline Offline
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I had a biopsy last Tuesday before Thanksgiving. Will get results this coming Thursday...
Hope everyone had a good thanksgiving!
Karen K.

 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc.org






To: Dercums_Disease@yahoogroups.com
From: placidcharmer@...
Date: Sun, 30 Nov 2008 20:07:40 +0000
Subject: [Dercums_Disease] Mammogram findings.


I just got back the results of my mammogram. I found them interesting.

They stated that I had benign-appearing intramammary lymph nodes with
no mammogram or ultrasound evidence of malignancy in either breast.

Findings...Craniocaudal and mediolaeral oblique views of both breast
show near complete fatty replacement with benign-appearing, well
circumscribed nodules deep in the medial aspects of both breasts.
there is no suspicious cluster of microcalcification, area of
architectural distortion, or skin thinkening in either breast.
Bilateral breast ultrasound shows normal fibroglandular tissue and fat
throughout both breasts. The small nodules appear to be intramammary
lymph nodes which are difficult to assess due to their blending in
with surrounding fat.

I find the findings very interesting. What do you think. Some of this
I tried to look up and couldn't find what it meant.

Love to all!
Christine



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Reply | Forward | Messages in this Topic (8)
#26841 From: "placidcharmer" <placidcharmer@...>
Date: Sun Nov 30, 2008 8:07 pm
Subject: Mammogram findings. 		placidcharmer
Offline Offline
Send Email Send Email
  
I just got back the results of my mammogram. I found them interesting.

They stated that I had benign-appearing intramammary lymph nodes with
no mammogram or ultrasound evidence of malignancy in either breast.

Findings...Craniocaudal and mediolaeral oblique views of both breast
show near complete fatty replacement with benign-appearing, well
circumscribed nodules deep in the medial aspects of both breasts.
there is no suspicious cluster of microcalcification, area of
architectural distortion, or skin thinkening in either breast.
Bilateral breast ultrasound shows normal fibroglandular tissue and fat
throughout both breasts.  The small nodules appear to be intramammary
lymph nodes which are difficult to assess due to their blending in
with surrounding fat.

I find the findings very interesting. What do you think.  Some of this
I tried to look up and couldn't find what it meant.

Love to all!
Christine

Reply | Forward | Messages in this Topic (8)
#26840 From: Fabric100@...
Date: Mon Nov 24, 2008 3:26 am
Subject: Re:FW: Great Idea 		fabric102
Offline Offline
Send Email Send Email
 
As someone who has spent a fair amount of time at Walter Reed, I understand and appreciate the desire and motivation of this, it is not accurate. Walter Reed cannot accept cards directly, due to security and morale issues. Sadly, the hospital had issues with inappropriate cards and they do not have the personnel to screen every card. If you will check this at Snopes, they provide the Red Cross address that can screen and deliver cards to not only wounded soldiers but other military personnel.

Anne

Reply | Forward | Messages in this Topic (3)
#26839 From: Pamela Harrison <ozziespamela@...>
Date: Mon Nov 24, 2008 12:56 am
Subject: Re: FW: Great Idea 		ozziespamela
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Sorry Karen,
This would be great except that, unless the card is addressed to a specific soldier, the post office won't send them through. This is due to heightened security. There is just to much risk of something dangerous being in the envelope or package.
Hugs,
Pamela

From: Karen Krzeminski <kamperk06@...>
To: Anthony Griffith <medinaman25@...>; Aubrey Griffith <aubreyhlc@...>; Brandy Poirier <bpoirier@...>; "clarkmk@..." <clarkmk@...>; Cyndie McCabe <cmccabe@...>; Josh Snyder <bait882001@...>; Kim Smith <shortymom48@...>; Laurie Muncey <webstermuncey@...>; Linda and Bob Colley <colleybl@...>; Marie Mayes <moortay@...>; My Group <dercums_disease@yahoogroups.com>
Sent: Sunday, November 23, 2008 3:46:08 PM
Subject: [Dercums_Disease] FW: Great Idea

When doing your Christmas cards this year, take one card and send it to this address.  If we pass this on and everyone sends one card, think of how many cards these wonderful special people who have sacrificed so much would get.
 A Great Idea!!!   When you are making out your Christmas card list this year, please include the following:
 
           A Recovering American Soldier
            c/o Walter Reed Army Medical   Center
            6900 Georgia Avenue,NW
            Washington , D.C. 20307-5001
 
   If you approve, please pass it on.




 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org

 
 
 
 



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Reply | Forward | Messages in this Topic (3)
#26838 From: Karen Krzeminski <kamperk06@...>
Date: Sun Nov 23, 2008 9:46 pm
Subject: FW: Great Idea 		aqua12062
Offline Offline
Send Email Send Email
 

When doing your Christmas cards this year, take one card and send it to this address.  If we pass this on and everyone sends one card, think of how many cards these wonderful special people who have sacrificed so much would get.
 A Great Idea!!!   When you are making out your Christmas card list this year, please include the following:
 
           A Recovering American Soldier
            c/o Walter Reed Army Medical   Center
            6900 Georgia Avenue,NW
            Washington , D.C. 20307-5001
 
   If you approve, please pass it on.




 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc.org

 
 
 
 



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Reply | Forward | Messages in this Topic (3)
#26837 From: invadedbyaliens1@...
Date: Sat Nov 22, 2008 2:30 am
Subject: Re: More on the sialic acid residues 		invadedbyaliens
Offline Offline
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Great, I'm a milkalcoholic
 
In a message dated 11/17/2008 12:12:42 P.M. Central Standard Time, ozziespamela@... writes:

Hi All,
Dr Herbst sent this to me with a suggestion I share this will my groups. Just FYI
Hugs and spoons,
Pamela
How Eating Red Meat
Can Spur Cancer Progression

November 13, 2008

By Debra Kain

Researchers at the  University of  California , San Diego School of Medicine, led by Ajit Varki, M.D., have shown a new mechanism for how human consumption of red meat and milk products could contribute to the increased risk of cancerous tumors.  Their findings, which suggest that inflammation resulting from a molecule introduced through consumption of these foods could promote tumor growth, are published online this week in advance of print publication in the Proceedings of the  National  Academy of Sciences (PNAS).

Varki, UC  San Diego School of Medicine distinguished professor of medicine and cellular and molecular medicine, and co-director of the UCSD Glycobiology Research and  Training  Center , and colleagues studied a non-human cellular molecule called N-glycolylneuraminic acid (Neu5Gc).  Neu5Gc is a type of glycan, or sugar molecule, that humans don’t naturally produce, but that can be incorporated into human tissues as a result of eating red meat.  The body then develops anti-Neu5Gc antibodies – an immune response that could potentially lead to chronic inflammation, as first suggested in a 2003 PNAS paper by Varki.

“We’ve shown that tumor tissues contain much more Neu5Gc than is usually found in normal human tissues,” said Varki.  “We therefore surmised that Neu5Gc must somehow benefit tumors.”

It has been recognized by scientists for some time that chronic inflammation can actually stimulate cancer, Varki explained.  So the researchers wondered if this was why tumors containing the non-human molecule grew even in the presence of Neu5Gc antibodies.

“The paradox of Neu5Gc accumulating in human tumors in the face of circulating antibodies suggested that a low-grade, chronic inflammation actually facilitated the tumor growth, so we set out to study that hypothesis,” said co-author Nissi M.Varki, M.D., UCSD professor of pathology.

Using specially bred mouse models that lacked the Neu5Gc molecule – mimicking humans before the molecule is absorbed into the body through ingesting red meat – the researchers induced tumors containing Neu5Gc, and then administered anti-Neu5Gc antibodies to half of the mice.  In mice that were given antibodies inflammation was induced, and the tumors grew faster.  In the control mice that were not treated with antibodies, the tumors were less aggressive.

Others have previously shown that humans who take non-steroidal anti-inflammatory drugs (commonly known as NSAIDs) have a reduced risk of cancer.  Therefore, the mice with cancerous tumors facilitated by anti-Neu5Gc antibodies were treated with an NSAID.  In these animals, the anti-inflammatory treatment blocked the effect of the Neu5Gc antibodies and the tumors were reduced in size.

“Taken together, our data indicate that chronic inflammation results from interaction of Neu5Gc accumulated in our bodies from eating red meat with the antibodies that circulate as an immune response to this non-human molecule – and this may contribute to cancer risk,” said Varki.

Additional contributors to the paper are Maria Hedlund and Vered Padler-Karavani, UCSD Departments of Medicine and Cellular and Molecular Medicine.  The study was funded in part by a grant from the National Cancer Institute, of the National Institutes of Health.

Table 2. Preliminary survey of total sialic acid and Neu5Gc content of common food items
Food item
% Neu5Gc*
Total Sia,*,mg/g
Neu5Gc content,mg/g
Serving size,† g
Servings
per day†
Total weight if eaten daily, g/day
Neu5Gc intake if eaten daily,‡mg
Cod
<0.1
40
<0.04
90
3
270
<11
Salmon
<0.1 –3.5
49
1.47
90
3
270
<11 - 397
Tuna
<0.1
32
<0.032
90
3
270
<9
Chicken
<0.1
76
<0.076
90
3
270
<21
Turkey
<0.1- 0.6
46
<0.046
90
3
270
<12 - 75
Duck
<0.1
20
<0.02
90
3
270
<5
Cow milk (2%)
3
258
7.74
237
2
474
3,668
Cow milk (raw)
3
262
7.86
237
2
474
3,726
Butter
3
40
1.2
5
3
15
18
Cow cheese
4
160
6.4
50
3
150
960
Goat cheese
42
95
39.9
44
3
132
5,267
Lamb
18
101
18.2
90
3
270
4,914
Pork
19
134
25.5
90
3
270
6,885
Beef§
31-43
70
30.1
90
3
270
5,859-8,127
 
 







Reply | Forward | Messages in this Topic (2)
#26836 From: Pamela Harrison <ozziespamela@...>
Date: Fri Nov 21, 2008 2:42 am
Subject: Re: Dr. Karen and friends...a little frightened again 		ozziespamela
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Karen wrote:
The last time I had a biopsy in my breast I had pre-cancerous tumor..the same cancer my mom had in 2001 when she got her mastomectomy so I'm feeling a little sad and anxious. BUT, It doesn't get me down to the degree the dercums does because I know there's a cure and with Dercums we are pretty screwed!
Anyways, thanks for the luck! :0)
Karen K.

Karen, Good thoughts and prayers coming your way for a good outcome for you!
Hugs and spoons,
Pamela

 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org



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Reply | Forward | Messages in this Topic (8)
#26835 From: Karen Krzeminski <kamperk06@...>
Date: Fri Nov 21, 2008 1:16 am
Subject: RE: Dr. Karen and friends...a little frightened again 		aqua12062
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my breast are filled with lumps its so hard to even feel if anything is odd they feel odd already i had a lump removed from each breast bothwere not cancer  good luck ,maybe urs will be the same ...
                                  jodi
 
Jodi,
The radiologist can tell the difference between lipoma and tumors and wew already discussed this option that maybe it's lipoma and he said lipoma's usually look as if they are regular fat by ultrasound or ctscans. The last time I had a biopsy in my breast I had pre-cancerous tumor..the same cancer my mom had in 2001 when she got her mastomectomy so I'm feeling a little sad and anxious. BUT, It doesn't get me down to the degree the dercums does because I know there's a cure and with Dercums we are pretty screwed!
Anyways, thanks for the luck! :0)
Karen K.

 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc.org



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#26834 From: "jzanker" <jzanker@...>
Date: Thu Nov 20, 2008 1:10 pm
Subject: Re: Dr. Karen and friends...a little frightened again 		jodith38
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my breast are filled with lumps its so hard to even feel if anything is odd they feel odd already i had a lump removed from each breast bothwere not cancer  good luck ,maybe urs will be the same ...
                                  jodi
----- Original Message -----
Sent: Sunday, November 16, 2008 12:47 PM
Subject: Re: [Dercums_Disease] Dr. Karen and friends...a little frightened again

Hi Karen,
I do know of one member on this group who is battling breast cancer. I doubt she is reading posts these days, so I figured I'd answer you. I don't believe having DD makes us more likely to get cancer, but it does make it more likely we won't catch it early. We tend to think all lumps are DD, and mammograms hurt, so we put them off too long.  It is good you are getting this checked out right away. I pray your lumps are benign.
Hugs and spoons,
Pamela

From: Karen Krzeminski <kamperk06@hotmail.com>
To: My Group <dercums_disease@yahoogroups.com>
Sent: Saturday, November 15, 2008 8:32:53 AM
Subject: [Dercums_Disease] Dr. Karen and friends...a little frightened again

Well, my doctor is now giving me new pain meds because instead of focusing on the Dercums right now we have bigger fish to fryt. I have masses in my left breast that have to be biopsied asap.
I had a lumpectomy 2 years ago in Feb. in my right breast, it was PREcancerous luckily. My Mom had a mastectomy in 2001...Anyway, guess I'm a little frightened but it's in my nature to stay positive.
Anyone else having issues with precancerous or cancerous tumors anywhere on their body?I'm thinking it's a link to our lowered immune system?
Waiting for my consult/referral to go through for Dr. Karen as well. It was submitted yesterday Dr. Karen.

 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org




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Reply | Forward | Messages in this Topic (8)
#26833 From: "jzanker" <jzanker@...>
Date: Thu Nov 20, 2008 1:23 pm
Subject: Re: Re: Keeping busy through pain making soap 		jodith38
Offline Offline
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I also found it on livewire  how beautiful ...
 
                                        jodi
----- Original Message -----
From: bkwrm40
Sent: Wednesday, November 12, 2008 12:02 PM
Subject: [Dercums_Disease] Re: Keeping busy through pain making soap

Here is the YouTube video of the song:

http://www.youtube.com/watch?v=R9geCS0v7w8

--- In Dercums_Disease@yahoogroups.com, Anne Stuart <krissieo@...>
wrote:
>
> I'd love to find a download for it too. There's one on iTunes but
> it's an operatic version that sort of loses the words.
>
> Krissie O, newcomer
>
> On Nov 12, 2008, at 8:16 AM, Suzann Cheney wrote:
>
> > I found the full Lyrics and a place to download the song Suzi.
> > Write me offline and I'll send you the URL
> >
> >
> >
>


Reply | Forward | Messages in this Topic (23)
#26832 From: "SURI" <suri@...>
Date: Mon Nov 17, 2008 8:18 pm
Subject: Re: Dr. Karen and friends...a little frightened again 		suri_chimom
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I like that your nature is to stay positive.  I am like that too most of the time.  When we have shocking and/or scary things happen in our lives it just makes sense to stay positive.  A lot of worrying will probably just be a waste of time.  Oh but it is easier said than done sometimes!! :)
 
Wishing you well :)
Suri
 
----- Original Message -----
Sent: Saturday, November 15, 2008 9:32 AM
Subject: [Dercums_Disease] Dr. Karen and friends...a little frightened again

Well, my doctor is now giving me new pain meds because instead of focusing on the Dercums right now we have bigger fish to fryt. I have masses in my left breast that have to be biopsied asap.
I had a lumpectomy 2 years ago in Feb. in my right breast, it was PREcancerous luckily. My Mom had a mastectomy in 2001...Anyway, guess I'm a little frightened but it's in my nature to stay positive.
Anyone else having issues with precancerous or cancerous tumors anywhere on their body?I'm thinking it's a link to our lowered immune system?
Waiting for my consult/referral to go through for Dr. Karen as well. It was submitted yesterday Dr. Karen.

 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc.org




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Reply | Forward | Messages in this Topic (8)
#26831 From: Pamela Harrison <ozziespamela@...>
Date: Mon Nov 17, 2008 6:11 pm
Subject: More on the sialic acid residues 		ozziespamela
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Hi All,
Dr Herbst sent this to me with a suggestion I share this will my groups. Just FYI
Hugs and spoons,
Pamela
How Eating Red Meat
Can Spur Cancer Progression

November 13, 2008

By Debra Kain

Researchers at the  University of  California , San Diego School of Medicine, led by Ajit Varki, M.D., have shown a new mechanism for how human consumption of red meat and milk products could contribute to the increased risk of cancerous tumors.  Their findings, which suggest that inflammation resulting from a molecule introduced through consumption of these foods could promote tumor growth, are published online this week in advance of print publication in the Proceedings of the  National  Academy of Sciences (PNAS).

Varki, UC  San Diego School of Medicine distinguished professor of medicine and cellular and molecular medicine, and co-director of the UCSD Glycobiology Research and  Training  Center , and colleagues studied a non-human cellular molecule called N-glycolylneuraminic acid (Neu5Gc).  Neu5Gc is a type of glycan, or sugar molecule, that humans don’t naturally produce, but that can be incorporated into human tissues as a result of eating red meat.  The body then develops anti-Neu5Gc antibodies – an immune response that could potentially lead to chronic inflammation, as first suggested in a 2003 PNAS paper by Varki.

“We’ve shown that tumor tissues contain much more Neu5Gc than is usually found in normal human tissues,” said Varki.  “We therefore surmised that Neu5Gc must somehow benefit tumors.”

It has been recognized by scientists for some time that chronic inflammation can actually stimulate cancer, Varki explained.  So the researchers wondered if this was why tumors containing the non-human molecule grew even in the presence of Neu5Gc antibodies.

“The paradox of Neu5Gc accumulating in human tumors in the face of circulating antibodies suggested that a low-grade, chronic inflammation actually facilitated the tumor growth, so we set out to study that hypothesis,” said co-author Nissi M.Varki, M.D., UCSD professor of pathology.

Using specially bred mouse models that lacked the Neu5Gc molecule – mimicking humans before the molecule is absorbed into the body through ingesting red meat – the researchers induced tumors containing Neu5Gc, and then administered anti-Neu5Gc antibodies to half of the mice.  In mice that were given antibodies inflammation was induced, and the tumors grew faster.  In the control mice that were not treated with antibodies, the tumors were less aggressive.

Others have previously shown that humans who take non-steroidal anti-inflammatory drugs (commonly known as NSAIDs) have a reduced risk of cancer.  Therefore, the mice with cancerous tumors facilitated by anti-Neu5Gc antibodies were treated with an NSAID.  In these animals, the anti-inflammatory treatment blocked the effect of the Neu5Gc antibodies and the tumors were reduced in size.

“Taken together, our data indicate that chronic inflammation results from interaction of Neu5Gc accumulated in our bodies from eating red meat with the antibodies that circulate as an immune response to this non-human molecule – and this may contribute to cancer risk,” said Varki.

Additional contributors to the paper are Maria Hedlund and Vered Padler-Karavani, UCSD Departments of Medicine and Cellular and Molecular Medicine.  The study was funded in part by a grant from the National Cancer Institute, of the National Institutes of Health.

Table 2. Preliminary survey of total sialic acid and Neu5Gc content of common food items
Food item
% Neu5Gc*
Total Sia,*,mg/g
Neu5Gc content,mg/g
Serving size,† g
Servings
per day†
Total weight if eaten daily, g/day
Neu5Gc intake if eaten daily,‡mg
Cod
<0.1
40
<0.04
90
3
270
<11
Salmon
<0.1 –3.5
49
1.47
90
3
270
<11 - 397
Tuna
<0.1
32
<0.032
90
3
270
<9
Chicken
<0.1
76
<0.076
90
3
270
<21
Turkey
<0.1- 0.6
46
<0.046
90
3
270
<12 - 75
Duck
<0.1
20
<0.02
90
3
270
<5
Cow milk (2%)
3
258
7.74
237
2
474
3,668
Cow milk (raw)
3
262
7.86
237
2
474
3,726
Butter
3
40
1.2
5
3
15
18
Cow cheese
4
160
6.4
50
3
150
960
Goat cheese
42
95
39.9
44
3
132
5,267
Lamb
18
101
18.2
90
3
270
4,914
Pork
19
134
25.5
90
3
270
6,885
Beef§
31-43
70
30.1
90
3
270
5,859-8,127
 
 




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#26830 From: Pamela Harrison <ozziespamela@...>
Date: Mon Nov 17, 2008 2:28 am
Subject: Re: Dr. Karen and friends...a little frightened again 		ozziespamela
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Karen, I suppose our weakened immune systems don't help us much. It may play a part. I can understand why you are worried, with that medical history. Stay on top of it!
Hugs and spoons,
Pamela

From: Karen Krzeminski <kamperk06@...>
To: My Group <dercums_disease@yahoogroups.com>
Sent: Sunday, November 16, 2008 7:04:13 PM
Subject: RE: [Dercums_Disease] Dr. Karen and friends...a little frightened again

Thanks Pamela--I figured since DD weakens our immune system maybe that's why I was getting so many precancerous tumors pulled out of my body...
I had a precancerous tumor in my colon last year.

 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org








Reply | Forward | Messages in this Topic (8)
#26829 From: Karen Krzeminski <kamperk06@...>
Date: Mon Nov 17, 2008 1:04 am
Subject: RE: Dr. Karen and friends...a little frightened again 		aqua12062
Offline Offline
Send Email Send Email
 
Thanks Pamela--I figured since DD weakens our immune system maybe that's why I was getting so many precancerous tumors pulled out of my body...
I had a precancerous tumor in my colon last year.

 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc.org






To: Dercums_Disease@yahoogroups.com
From: ozziespamela@...
Date: Sun, 16 Nov 2008 10:47:37 -0800
Subject: Re: [Dercums_Disease] Dr. Karen and friends...a little frightened again


Hi Karen,
I do know of one member on this group who is battling breast cancer. I doubt she is reading posts these days, so I figured I'd answer you. I don't believe having DD makes us more likely to get cancer, but it does make it more likely we won't catch it early. We tend to think all lumps are DD, and mammograms hurt, so we put them off too long.  It is good you are getting this checked out right away. I pray your lumps are benign.
Hugs and spoons,
Pamela

From: Karen Krzeminski <kamperk06@hotmail.com>
To: My Group <dercums_disease@yahoogroups.com>
Sent: Saturday, November 15, 2008 8:32:53 AM
Subject: [Dercums_Disease] Dr. Karen and friends...a little frightened again

Well, my doctor is now giving me new pain meds because instead of focusing on the Dercums right now we have bigger fish to fryt. I have masses in my left breast that have to be biopsied asap.
I had a lumpectomy 2 years ago in Feb. in my right breast, it was PREcancerous luckily. My Mom had a mastectomy in 2001...Anyway, guess I'm a little frightened but it's in my nature to stay positive.
Anyone else having issues with precancerous or cancerous tumors anywhere on their body?I'm thinking it's a link to our lowered immune system?
Waiting for my consult/referral to go through for Dr. Karen as well. It was submitted yesterday Dr. Karen.

 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org





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Reply | Forward | Messages in this Topic (8)
#26828 From: Pamela Harrison <ozziespamela@...>
Date: Sun Nov 16, 2008 6:47 pm
Subject: Re: Dr. Karen and friends...a little frightened again 		ozziespamela
Offline Offline
Send Email Send Email
 
Hi Karen,
I do know of one member on this group who is battling breast cancer. I doubt she is reading posts these days, so I figured I'd answer you. I don't believe having DD makes us more likely to get cancer, but it does make it more likely we won't catch it early. We tend to think all lumps are DD, and mammograms hurt, so we put them off too long.  It is good you are getting this checked out right away. I pray your lumps are benign.
Hugs and spoons,
Pamela

From: Karen Krzeminski <kamperk06@...>
To: My Group <dercums_disease@yahoogroups.com>
Sent: Saturday, November 15, 2008 8:32:53 AM
Subject: [Dercums_Disease] Dr. Karen and friends...a little frightened again

Well, my doctor is now giving me new pain meds because instead of focusing on the Dercums right now we have bigger fish to fryt. I have masses in my left breast that have to be biopsied asap.
I had a lumpectomy 2 years ago in Feb. in my right breast, it was PREcancerous luckily. My Mom had a mastectomy in 2001...Anyway, guess I'm a little frightened but it's in my nature to stay positive.
Anyone else having issues with precancerous or cancerous tumors anywhere on their body?I'm thinking it's a link to our lowered immune system?
Waiting for my consult/referral to go through for Dr. Karen as well. It was submitted yesterday Dr. Karen.

 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org




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Reply | Forward | Messages in this Topic (8)
#26827 From: Karen Krzeminski <kamperk06@...>
Date: Sat Nov 15, 2008 2:32 pm
Subject: Dr. Karen and friends...a little frightened again 		aqua12062
Offline Offline
Send Email Send Email
 
Well, my doctor is now giving me new pain meds because instead of focusing on the Dercums right now we have bigger fish to fryt. I have masses in my left breast that have to be biopsied asap.
I had a lumpectomy 2 years ago in Feb. in my right breast, it was PREcancerous luckily. My Mom had a mastectomy in 2001...Anyway, guess I'm a little frightened but it's in my nature to stay positive.
Anyone else having issues with precancerous or cancerous tumors anywhere on their body?I'm thinking it's a link to our lowered immune system?
Waiting for my consult/referral to go through for Dr. Karen as well. It was submitted yesterday Dr. Karen.

 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc.org




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Reply | Forward | Messages in this Topic (8)
#26826 From: "placidcharmer" <placidcharmer@...>
Date: Fri Nov 14, 2008 7:54 pm
Subject: Healing Powers of Honey 		placidcharmer
Offline Offline
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I researched the healing powers of honey.  I have local unprocessed
honey here.  The best thing about it...it never goes bad.  There is
NO shelf-life for honey.  I now have a new use other than making
dressing or in my tea.

*Place unprocessed honey on a steril 4x4 pad and place it over your
scar area at night.*

Substantial evidence demonstrates that honey, one of the oldest
healing remedies known to medicine, produces effective results when
used as a wound dressing. A review article in the most recent issue
of SAGE Publications' International Journal of Lower Extremity Wounds
summarizes the data.

[More:]

Scientists performed 22 trials involving 2,062 patients treated with
honey, as well as an additional 16 trials that were performed on
experimental animals. Honey was found to be beneficial as a wound
dressing in the following ways:

* Honey's antibacterial quality not only rapidly clears existing
infection, it protects wounds from additional infection
* Honey debrides wounds and removes malodor
* Honey's anti-inflammatory activity reduces edema and minimizes
scarring
* Honey stimulates growth of granulation and epithelial tissues to
speed healing

The review article was written by Dr. P.C. Molan of New Zealand's
University Waikato. He noted that, although the many randomized
controlled clinical trials strongly support the use the honey in
wound care; the trials may not have been double-blind. Of course,
double blind testing would be difficult to achieve because honey is a
very recognizable substance.

Molan concludes, "the barrier to using honey that has existed for
many clinicians who have been constrained to using only licensed
products has been removed now that honey is available in the form of
various sterile products licensed for use in wound care. Clinicians
should check the evidence that exists to support the use of honey."

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#26825 From: "bkwrm40" <bkwrm40@...>
Date: Fri Nov 14, 2008 7:10 pm
Subject: Re: BRENDA 		bkwrm40
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Send Email Send Email
  
Hi Brenda!

Yes, let's meet. I have met with a few other DD patients as well. I am
available most any day since I sell online from home. Tomorrow is even
fine!

You can email me at bkwrm40@... and I can give you my cell phone
number.

Looking forward to meeting you,

Sue

Reply | Forward | Messages in this Topic (23)
#26824 From: "Brenda" <breninwi@...>
Date: Fri Nov 14, 2008 1:29 pm
Subject: Re: Keeping busy through pain making soap 		breninwi
Offline Offline
Send Email Send Email
  
Hi Sue, please accept my apologies for missing your post.
I live 16 miles east of Wausau on Hwy Z.

I have doubts about Froedert as well because I have heard stories from
another Dercums victim that the only doctor at Froedert with
experience of Dercums has since left. But on the other hand, this was
a few years a go and I am hoping they might have better knowledge by now.

I'm wondering... you have seen Dr. Herbst and have a true dx. You
probably have more knowledge of this over my current doctors. What
would you think about meeting with me, let me show you the areas and
lumps and see what you think. If you think I have Dercums, I guess
I'll make arrangements to see Dr. Herbst. I am willing to travel to
you, meet you at a restaurant or even invite you to my house. What
ever is convenient for you, I know I am asking a big favor and will go
to any length to know the truth. You can either email me privately or
here on the message board.

Brenda


--- In Dercums_Disease@yahoogroups.com, "bkwrm40" <bkwrm40@...> wrote:
>
> Hi Brenda,
>
> Where in WI do you live?  I live just north of Waupun, about 50 miles
> north of Madison.
>
> I was referred to Froedert 5--6 years ago and actually went to see a
> woman doc who 'wrote' an article about DD. Well, it turns out she
> knew NOTHING about DD and had never seen a case. I think she simply
> put her name on an informational eMed article. However, she did have
> her intern remove one of my lumps and then told me that I never
> needed to come back to them and that I could contact any surgeon for
> removals if I wished.
>
> Unreal! My local doc here was not pleased.
>
> Since then, I have met with Dr. H several times and definitely have
> DD. However, I will say that my lumps have morphed through the years.
> (I also tested positive for Lyme and was on meds for it on and off
> for a couple years.) My lumps once were all the 'deeper' variety. Now
> there are still deep ones (large and small), but also many huge ones
> that are more like masses that are readily visible to the naked eye.
> It is like I've watch my body 'morph' over the years.
>
> I've often pondered going back to the same woman doc I saw at
> Froedert years ago and asking her opinion now:)
>
> My local docs here all readily accept that I have DD. It's not even
> an issue with them other than they feel helpless regarding treatment,
> and defer to Dr. H there.
>
> Sue
> Age 51
>

Reply | Forward | Messages in this Topic (23)
#26823 From: Pamela Harrison <ozziespamela@...>
Date: Wed Nov 12, 2008 7:01 pm
Subject: Re: Re: Suzanne-OT Christmas- Keeping busy through pain making soap 		ozziespamela
Offline Offline
Send Email Send Email
 
Hi Suzanne,
I think that's a wise decision, but it would be tough for me to abide by too. I am making gifts this year. I just don't have the money for my usual shopping spree. Now I just have to find the time to make things!
Hugs and spoons,
Pamela


Reply | Forward | Messages in this Topic (1)
#26822 From: "bkwrm40" <bkwrm40@...>
Date: Wed Nov 12, 2008 6:02 pm
Subject: Re: Keeping busy through pain making soap 		bkwrm40
Offline Offline
Send Email Send Email
  
Here is the YouTube video of the song:

http://www.youtube.com/watch?v=R9geCS0v7w8


--- In Dercums_Disease@yahoogroups.com, Anne Stuart <krissieo@...>
wrote:
>
> I'd love to find a download for it too.  There's one on iTunes but
> it's an operatic version that sort of loses the words.
>
> Krissie O, newcomer
>
> On Nov 12, 2008, at 8:16 AM, Suzann Cheney wrote:
>
> > I found the full Lyrics and a place to download the song Suzi.
> > Write me offline and I'll send you the URL
> >
> >
> >
>

Reply | Forward | Messages in this Topic (23)
#26821 From: Anne Stuart <krissieo@...>
Date: Wed Nov 12, 2008 4:03 pm
Subject: Re: Re: Keeping busy through pain making soap 		krissieo_2000
Offline Offline
Send Email Send Email
 
I'd love to find a download for it too.  There's one on iTunes but it's an operatic version that sort of loses the words.

Krissie O, newcomer

On Nov 12, 2008, at 8:16 AM, Suzann Cheney wrote:

I found the full Lyrics and a place to download the song Suzi.  Write me offline and I’ll send you the URL

 



Reply | Forward | Messages in this Topic (23)
#26820 From: "Suzann Cheney" <scheney@...>
Date: Wed Nov 12, 2008 1:16 pm
Subject: RE: Re: Keeping busy through pain making soap 		suzanncheney
Offline Offline
Send Email Send Email
 

I found the full Lyrics and a place to download the song Suzi.  Write me offline and I’ll send you the URL

 


----
THE CLOSING OF THE YEAR
(Written by Trevor Horn and Hans Zimmer)

If I cannot bring you comfort
then at least I bring you hope
For nothing is more precious
than the time we have and so

We all must learn from small misfortunes
count the blessings that are real
Let the bells ring out for Christmas
at the closing of the year
Let the bells ring out for Christmas
at the closing of the year

(Children chorus)
Up on the knees of a soldier
made of parts of wood, with wind in your hair
Silver bells on a stolen reindeer
as we race to the castle over there

If I cannot bring you comfort
then at least I bring you hope

Now all the winter bells are ringing
hear them echo through the snow
And the children's voices singing
on the streets so far below

This is a time to be together
and the truth is somewhere here
Within our love for people
at the closing of the year

(Seal's solo)
We'll walk innocent
with all of the pain
and all of the patience
and all of the way
and all of us right
and all of us say
Love one another
We'll fly in the arms of time
walk in the waves, never fall
Don't fall
(at the closing of the year)
at the closing of the year

If I cannot bring you comfort
then at least I bring you hope

Then at least I bring you hope

 

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 Suzi More
Sent: Tuesday, November 11, 2008 8:04 PM
To: Dercums_Disease@yahoogroups.com
Subject: Re: [Dercums_Disease] Re: Keeping busy through pain making soap

 

I feel so lucky that I have a few good doctors that I can depend on.

Even though they feel a little helpless, the rheumatologist  has read all

of the material from Herbst and we are carefully trying different things

from the recommendations that she has on her site. At least, there is

some hope. I have really been taken by a beautiful Christmas song that

comes from the 1992 Movie, "Toys" It is called "At the closing of the

Year."  The words keep reminding me that we must keep trying no matter

how hard things get. The music was written by Trevor Horn and Hans Zimmer.

It is almost impossible to find to buy or even rent.

"If I cannot bring you comfort, then at least I bring you hope.

for nothing is more precious than the time we have and so

We all must learn from small misfortunes

count the blessings that are real.

Let the bells ring out for Christmas

at the Closing of the Year."

I hope I am not offending anyone. I always look forward.

It is just that the holidays are quickly coming around and

if it weren't for our families and the Thanksgivings, Hanukahs,

Christmas and Kwaanza gatherings and time with our children

or our parents and our grandchildren then I don't know what

people with serious pain and suffering have to look forward to

but just another lonely day with more pain and suffering.

Suzi

 

From: bkwrm40 <bkwrm40@aol.com>
To: Dercums_Disease@yahoogroups.com
Sent: Tuesday, November 11, 2008 2:32:26 PM
Subject: [Dercums_Disease] Re: Keeping busy through pain making soap

Hi Brenda,

Where in WI do you live? I live just north of Waupun, about 50 miles
north of Madison.

I was referred to Froedert 5--6 years ago and actually went to see a
woman doc who 'wrote' an article about DD. Well, it turns out she
knew NOTHING about DD and had never seen a case. I think she simply
put her name on an informational eMed article. However, she did have
her intern remove one of my lumps and then told me that I never
needed to come back to them and that I could contact any surgeon for
removals if I wished.

Unreal! My local doc here was not pleased.

Since then, I have met with Dr. H several times and definitely have
DD. However, I will say that my lumps have morphed through the years.
(I also tested positive for Lyme and was on meds for it on and off
for a couple years.) My lumps once were all the 'deeper' variety. Now
there are still deep ones (large and small), but also many huge ones
that are more like masses that are readily visible to the naked eye.
It is like I've watch my body 'morph' over the years.

I've often pondered going back to the same woman doc I saw at
Froedert years ago and asking her opinion now:)

My local docs here all readily accept that I have DD. It's not even
an issue with them other than they feel helpless regarding treatment,
and defer to Dr. H there.

Sue
Age 51



Reply | Forward | Messages in this Topic (23)
#26819 From: "Suzann Cheney" <scheney@...>
Date: Wed Nov 12, 2008 1:09 pm
Subject: RE: Re: Keeping busy through pain making soap 		suzanncheney
Offline Offline
Send Email Send Email
 

Thank you Suzi for sending the words from this song!  Beautiful and a great reminder to us all what the Holidays are really meant for.  For me it’s always my family and friends and I look forward to the holidays with great longing as I know it will be a time filled with laughter, fun, jokes, (sometimes a few tears), but mostly it’s about the warmth that spreads when I’m with my family.  This year with the economy in the state it is in my family and I have talked about not giving Christmas gifts to each other, but rather just enjoying each other’s company as we always do and being truly thankful for the things we do have.  It will be really hard on my to not buy gifts for anyone, but financially, we can’t afford to anyway so that worry is taken away from me, now it’s just living with the fact that it’s a reality that can’t be changed.  So for me, being with my family and friends will truly mean much more and I plan to cherish every moment I can.

 

I wish you knew the name of the song I could help you look for it.  It sounds beautiful.

 

Thanks for sharing and I hope your holidays are family and fun filled as well!

 

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 Suzi More
Sent: Tuesday, November 11, 2008 8:04 PM
To: Dercums_Disease@yahoogroups.com
Subject: Re: [Dercums_Disease] Re: Keeping busy through pain making soap

 

I feel so lucky that I have a few good doctors that I can depend on.

Even though they feel a little helpless, the rheumatologist  has read all

of the material from Herbst and we are carefully trying different things

from the recommendations that she has on her site. At least, there is

some hope. I have really been taken by a beautiful Christmas song that

comes from the 1992 Movie, "Toys" It is called "At the closing of the

Year."  The words keep reminding me that we must keep trying no matter

how hard things get. The music was written by Trevor Horn and Hans Zimmer.

It is almost impossible to find to buy or even rent.

"If I cannot bring you comfort, then at least I bring you hope.

for nothing is more precious than the time we have and so

We all must learn from small misfortunes

count the blessings that are real.

Let the bells ring out for Christmas

at the Closing of the Year."

I hope I am not offending anyone. I always look forward.

It is just that the holidays are quickly coming around and

if it weren't for our families and the Thanksgivings, Hanukahs,

Christmas and Kwaanza gatherings and time with our children

or our parents and our grandchildren then I don't know what

people with serious pain and suffering have to look forward to

but just another lonely day with more pain and suffering.

Suzi

 

From: bkwrm40 <bkwrm40@aol.com>
To: Dercums_Disease@yahoogroups.com
Sent: Tuesday, November 11, 2008 2:32:26 PM
Subject: [Dercums_Disease] Re: Keeping busy through pain making soap

Hi Brenda,

Where in WI do you live? I live just north of Waupun, about 50 miles
north of Madison.

I was referred to Froedert 5--6 years ago and actually went to see a
woman doc who 'wrote' an article about DD. Well, it turns out she
knew NOTHING about DD and had never seen a case. I think she simply
put her name on an informational eMed article. However, she did have
her intern remove one of my lumps and then told me that I never
needed to come back to them and that I could contact any surgeon for
removals if I wished.

Unreal! My local doc here was not pleased.

Since then, I have met with Dr. H several times and definitely have
DD. However, I will say that my lumps have morphed through the years.
(I also tested positive for Lyme and was on meds for it on and off
for a couple years.) My lumps once were all the 'deeper' variety. Now
there are still deep ones (large and small), but also many huge ones
that are more like masses that are readily visible to the naked eye.
It is like I've watch my body 'morph' over the years.

I've often pondered going back to the same woman doc I saw at
Froedert years ago and asking her opinion now:)

My local docs here all readily accept that I have DD. It's not even
an issue with them other than they feel helpless regarding treatment,
and defer to Dr. H there.

Sue
Age 51



Reply | Forward | Messages in this Topic (23)
#26818 From: Suzi More <suzimore92@...>
Date: Wed Nov 12, 2008 1:04 am
Subject: Re: Re: Keeping busy through pain making soap 		suzisblue
Offline Offline
Send Email Send Email
 
I feel so lucky that I have a few good doctors that I can depend on.
Even though they feel a little helpless, the rheumatologist  has read all
of the material from Herbst and we are carefully trying different things
from the recommendations that she has on her site. At least, there is
some hope. I have really been taken by a beautiful Christmas song that
comes from the 1992 Movie, "Toys" It is called "At the closing of the
Year."  The words keep reminding me that we must keep trying no matter
how hard things get. The music was written by Trevor Horn and Hans Zimmer.
It is almost impossible to find to buy or even rent.
"If I cannot bring you comfort, then at least I bring you hope.
for nothing is more precious than the time we have and so
We all must learn from small misfortunes
count the blessings that are real.
Let the bells ring out for Christmas
at the Closing of the Year."
I hope I am not offending anyone. I always look forward.
It is just that the holidays are quickly coming around and
if it weren't for our families and the Thanksgivings, Hanukahs,
Christmas and Kwaanza gatherings and time with our children
or our parents and our grandchildren then I don't know what
people with serious pain and suffering have to look forward to
but just another lonely day with more pain and suffering.
Suzi

From: bkwrm40 <bkwrm40@...>
To: Dercums_Disease@yahoogroups.com
Sent: Tuesday, November 11, 2008 2:32:26 PM
Subject: [Dercums_Disease] Re: Keeping busy through pain making soap

Hi Brenda,

Where in WI do you live? I live just north of Waupun, about 50 miles
north of Madison.

I was referred to Froedert 5--6 years ago and actually went to see a
woman doc who 'wrote' an article about DD. Well, it turns out she
knew NOTHING about DD and had never seen a case. I think she simply
put her name on an informational eMed article. However, she did have
her intern remove one of my lumps and then told me that I never
needed to come back to them and that I could contact any surgeon for
removals if I wished.

Unreal! My local doc here was not pleased.

Since then, I have met with Dr. H several times and definitely have
DD. However, I will say that my lumps have morphed through the years.
(I also tested positive for Lyme and was on meds for it on and off
for a couple years.) My lumps once were all the 'deeper' variety. Now
there are still deep ones (large and small), but also many huge ones
that are more like masses that are readily visible to the naked eye.
It is like I've watch my body 'morph' over the years.

I've often pondered going back to the same woman doc I saw at
Froedert years ago and asking her opinion now:)

My local docs here all readily accept that I have DD. It's not even
an issue with them other than they feel helpless regarding treatment,
and defer to Dr. H there.

Sue
Age 51



Reply | Forward | Messages in this Topic (23)
#26817 From: Karen Krzeminski <kamperk06@...>
Date: Wed Nov 12, 2008 12:50 am
Subject: RE: Re: I am in pain 		aqua12062
Offline Offline
Send Email Send Email
 
Not stupid but yea, I hate this memory thing! I have yellow sticky notes all over my office at work! lol!!

 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc.org




To: Dercums_Disease@yahoogroups.com
From: suzimore92@...
Date: Sun, 9 Nov 2008 20:28:55 -0800
Subject: Re: [Dercums_Disease] Re: I am in pain

I am also going to check out my three different cousins, they live in , now that's that!
I just forgot where my cousins live and it is five minutes and I still can't remember.
it's past 11:00pm here and I guess I just might be tired. Maybe I will remember tomorrow.
this is a sad state of events. i was just writing one of the cousins and it will be stupid of me
if I have to ask him where he lives, right?
Suzi
From: Karen Krzeminski <kamperk06@hotmail.com>It
To: dercums_disease@yahoogroups.com
Sent: Saturday, November 8, 2008 6:41:24 AM
Subject: RE: [Dercums_Disease] Re: I am in pain

!
ished a bit. No real cold but the temps at night get down to 40-50 degrees sometimes!
It's beautiful with the lake, Colorado River and the MOUNTAIN views!
I even have a great PCP here who has had one previous Dercums in NV in the past. Come on over Suzi!!
Karen K...  :0)

 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org







To: Dercums_Disease@ yahoogroups. com
From: suzimore92@yahoo. com
Date: Fri, 7 Nov 2008 15:53:40 -0800
Subject: Re: [Dercums_Disease] Re: I am in pain


Many years ago I went to perform on a conference in Flagstaff, Arizona, this
was in June when you would think it would be so hot you couldn't stand it. It was
beautiful and I never felt so good. Even in Florida, Tampa and Port St. Lucie, I have
been comfortable but they both were a bit humid for me. I will be searching in
another year or so for somewhere either Arizona or New Mexico for a better climate
to live in. I have been offline for two days now because the dercums pain is all over
and I don't know what to do, I haven't had the Noni in a month, even though I am
taking the GSE, I am hurting more than I ever have before, the lipoma removal went
fine but now I am paying a terrible price in this bad flareup and I live in NJ and this
weather is a miserable month of cold wet and rainy days.
Suzi  

From: Karen Krzeminski <kamperk06@hotmail. com>
To: dercums_disease@ yahoogroups. com
Sent: Thursday, November 6, 2008 4:50:32 PM
Subject: RE: [Dercums_Disease] Re: I am in pain

Wow, we really are different, Brenda! The heat and humidity make me feel much worse!
I'm with you Pamela! I moved out to AZ and this past summer the lower humidity WAS WONDERFUL! I was amazed.. The heat got a bit bad 120 degree's but I just stayed inside in the AC and where I work is AC so I was okay...
Karen K.

 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org








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Reply | Forward | Messages in this Topic (28)
#26816 From: "bkwrm40" <bkwrm40@...>
Date: Tue Nov 11, 2008 10:32 pm
Subject: Re: Keeping busy through pain making soap 		bkwrm40
Offline Offline
Send Email Send Email
  
Hi Brenda,

Where in WI do you live?  I live just north of Waupun, about 50 miles
north of Madison.

I was referred to Froedert 5--6 years ago and actually went to see a
woman doc who 'wrote' an article about DD. Well, it turns out she
knew NOTHING about DD and had never seen a case. I think she simply
put her name on an informational eMed article. However, she did have
her intern remove one of my lumps and then told me that I never
needed to come back to them and that I could contact any surgeon for
removals if I wished.

Unreal! My local doc here was not pleased.

Since then, I have met with Dr. H several times and definitely have
DD. However, I will say that my lumps have morphed through the years.
(I also tested positive for Lyme and was on meds for it on and off
for a couple years.) My lumps once were all the 'deeper' variety. Now
there are still deep ones (large and small), but also many huge ones
that are more like masses that are readily visible to the naked eye.
It is like I've watch my body 'morph' over the years.

I've often pondered going back to the same woman doc I saw at
Froedert years ago and asking her opinion now:)

My local docs here all readily accept that I have DD. It's not even
an issue with them other than they feel helpless regarding treatment,
and defer to Dr. H there.

Sue
Age 51

Reply | Forward | Messages in this Topic (23)
#26815 From: Suzi More <suzimore92@...>
Date: Mon Nov 10, 2008 4:28 am
Subject: Re: Re: I am in pain 		suzisblue
Offline Offline
Send Email Send Email
 
I am also going to check out my three different cousins, they live in , now that's that!
I just forgot where my cousins live and it is five minutes and I still can't remember.
it's past 11:00pm here and I guess I just might be tired. Maybe I will remember tomorrow.
this is a sad state of events. i was just writing one of the cousins and it will be stupid of me
if I have to ask him where he lives, right?
Suzi
From: Karen Krzeminski <kamperk06@...>It
To: dercums_disease@yahoogroups.com
Sent: Saturday, November 8, 2008 6:41:24 AM
Subject: RE: [Dercums_Disease] Re: I am in pain

!

ished a bit. No real cold but the temps at night get down to 40-50 degrees sometimes!
It's beautiful with the lake, Colorado River and the MOUNTAIN views!
I even have a great PCP here who has had one previous Dercums in NV in the past. Come on over Suzi!!
Karen K...  :0)

 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org






To: Dercums_Disease@ yahoogroups. com
From: suzimore92@yahoo. com
Date: Fri, 7 Nov 2008 15:53:40 -0800
Subject: Re: [Dercums_Disease] Re: I am in pain


Many years ago I went to perform on a conference in Flagstaff, Arizona, this
was in June when you would think it would be so hot you couldn't stand it. It was
beautiful and I never felt so good. Even in Florida, Tampa and Port St. Lucie, I have
been comfortable but they both were a bit humid for me. I will be searching in
another year or so for somewhere either Arizona or New Mexico for a better climate
to live in. I have been offline for two days now because the dercums pain is all over
and I don't know what to do, I haven't had the Noni in a month, even though I am
taking the GSE, I am hurting more than I ever have before, the lipoma removal went
fine but now I am paying a terrible price in this bad flareup and I live in NJ and this
weather is a miserable month of cold wet and rainy days.
Suzi  

From: Karen Krzeminski <kamperk06@hotmail. com>
To: dercums_disease@ yahoogroups. com
Sent: Thursday, November 6, 2008 4:50:32 PM
Subject: RE: [Dercums_Disease] Re: I am in pain

Wow, we really are different, Brenda! The heat and humidity make me feel much worse!
I'm with you Pamela! I moved out to AZ and this past summer the lower humidity WAS WONDERFUL! I was amazed.. The heat got a bit bad 120 degree's but I just stayed inside in the AC and where I work is AC so I was okay...
Karen K.

 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org








Get 5 GB of storage with Windows Live Hotmail. Sign up today.





See how Windows® connects the people, information, and fun that are part of your life Click here


Reply | Forward | Messages in this Topic (28)
#26814 From: Fabric100@...
Date: Sun Nov 9, 2008 12:53 am
Subject: Re: What does the new government mean for us? 		fabric102
Offline Offline
Send Email Send Email
 
Will--

Fantastic job in describing the 'process'.  I agree with you that all campaign promises should be finely sifted with a good portion of salt as all of those 'promises' are dependent on Congress--at least to a large degree.  And alterations in programs often take years to enact.

Anyway, great explanation.  Your lawyer is showing.  :)  tee hee hee

Anne

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