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#26229 From: Dercums_Disease@yahoogroups.com
Date: Fri Aug 1, 2008 7:46 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


#26228 From: Suzi More <suzimore92@...>
Date: Thu Jul 31, 2008 6:43 pm
Subject: Re: Re: Having a difficult time with life!
suzisblue
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Dear Vickie,
 
You do not sound bipolar, my daughter is bipolar and must be on her meds or she is
off the wall. You are, like everyone else here, in constant pain.
 
Your husband cannot stand to see the person he loves in such pain.
 
This is a real problem.
 
I have lidoderm pads which I will try tonight if the new pain gel, doesnt help.
 Votaren Gel, which I got a few months ago, I use very sparingly, once a week
or so, because I am a little concerned about side effects.
 
 I have hydrocodone and vicodin which I could take but
the side effects are terrible constipation and I don't know which to do.
Even though I am afraid of going back to work in September, I think that
pushing myself to go back to the schedule may actually help me keep busy
and when I am really busy, I sometimes am able to handle the pain.
 
Suzi

----- Original Message ----
From: Vickie Williams <eachdayicryevenmore@...>
To: Dercums_Disease@yahoogroups.com
Sent: Wednesday, July 30, 2008 8:50:38 PM
Subject: Re: [Dercums_Disease] Re: Having a difficult time with life!

Suzi:
 
I do cry for you! I know that feeling of hoping that things will change.  That is how my husband is. He is very
mean to me and then comes back and asks for forgiveness.  My husband is really a special guy. He is like your squeeze. My husband baby's me a lot too. I am not complaining but, I can not stand him hanging on me. I can not even stand up and he comes and hangs on me putting his weight on me. That only makes my whole body hurt more.  I have been complaining and lately he has not done it. So I am feeling hurt that he does not show his loving as much. I guess us women can change our mines.  We do have that right.  It is in the "Bible Of Taking Care Of Your Wife".  LOL (to the men out there reading this email!!! 
 
Alcoholic does not run in his family. However it does in mine.  Lately I am dying for a drink of hard liquor. I had to stop smoking 2 years ago on Mother's Day! I just could not breathe anymore. I have positive TB and I was on Isoniaiazid 300 mg daily. It was suppose to clear my lungs from TB, so I could take Remicade.  I had to stop the medication just so I could breathe. That means I can not take Remicade medication.  I am allergic to pain meds.  Only a few I can take the others cause my heart to pound.
 
Some how I got off the subject here. Yes, I know that feeling. Never had a drinking problem. Never drink hard liquor neither.  My drinks was orange juice and vodka. I drank only when I went out and that was not much.  Work kept me pretty busy since I was raising my son by myself and I was out of state to depend on relatives. 
 
My husbands real problem is depression. He is on Wellbrutin 150 mg twice a day. He does not always take it at night. When I remind him he gets pissed off at me. Says I am not his mother. 
 
I am also on Wellburtin 300 mg XL daily, Lexapro 20 and Remeron 30 mg at night.  I have problems sleeping and that is suppose to help me sleep.  It does most times however, when I wake up I feel that I walked into a wall.  Accordingly to my therapist she says he is bipolar.  She also says I am too! I do not think I am, so I do not feel he is either. He is suffering from altimers and he is getting worst ever day.  I am surprise he hasn't forgot how to come home at night. 
 
Well, my hands are really hurting. As I type my fingers pop and the pain right now is really painful.
 
You take care of yourself. You are in my prayers!!!
Hugs Vickie   

----- Original Message ----
From: Suzi More <suzimore92@yahoo. com>
To: Dercums_Disease@ yahoogroups. com
Sent: Monday, July 28, 2008 10:11:51 PM
Subject: Re: [Dercums_Disease] Re: Having a difficult time with life!

Thank you Vicky for this reply, at the moment it would be tough to leave him because my health is declining,
I am actually in some steep debt for one more year and he always comes back and is sorry, he must stop
drinking and is saying he will. I know the old once an alcoholic always an alcoholic thing is true but he stopped
for two whole years and has been bad for one year now,  I want to see him do it again and if not, he needs to get help.
Suzi

 

----- Original Message ----
From: Vickie Williams <eachdayicryevenmore @yahoo.com>
To: Dercums_Disease@ yahoogroups. com
Sent: Sunday, July 27, 2008 11:16:47 AM
Subject: Re: [Dercums_Disease] Re: Having a difficult time with life!

You want a reply? If it was me I would tell the boyfriend to go home to his mother!
 
But that is me! You have a paying job and you seem to have your head together.
Why would you what someone to drag you down? Do you have children with this man?
What is the reason you keep him around? I once had a man like that and I was married to him
so I pretended I was cheating on him. It worked! He got pissed off and left. We had been
married only 3 months. Why I did marry him I don't know why? It was the prime of my life and
I was tired of being alone.  But, in the long run I was still alone.  He liked his beer more than he
loved me.
 
Pretending that I was involved with someone was the wrong thing for me to do.  I was lucky he
did not bet on me. You have to decide that the relationship you are in is going anywhere. Once
an alcoholic always an alcoholic. I had that experience and I will not go through it again. If he stops
drinking he will always want to drink again and you will have that problem with you the rest of your life.
 
Ask yourself if you want to live like that for the rest of your life?
 
I ask myself the same thing with my husband. Why do I want to stay with a man that has temper
fits.  Can not hear me at times. Claims it's his hearing. He gets it from his mother who has lost her hearing. The other siblings has that problem too! But sometimes I feel it chooses not to hear. We did not have any children together. So why do I stay.  I have disability.  I truly feel that once you are married in the Lord's eyes you should work things out.  The vow "For better of worst until death we do part". and the fact I can not make it on my own.  Poor excuse uh? The for better or worst is the may factor here!
 
My husband has been good to me when I needed him in the past. I should not leave him when he is having a depression of his own. Thank God he does not call me names. I am down right now I can not say what I would do if he called me names.
 
Hugs Vickie
 
 

 
----- Original Message ----
From: Suzi More <suzimore92@yahoo. com>
To: Dercums_Disease@ yahoogroups. com
Sent: Saturday, July 26, 2008 9:32:54 PM
Subject: Re: [Dercums_Disease] Re: Having a difficult time with life!

Dear Teri,

 

My boyfriend of ten years tells me to tell everyone who asks me that I am "just fine"

he then gets mad a few times a week, drinks too much and gets nasty, he is mad that I have gained over 80 lbs and he

reminds me that he hasn't gained an ounce since we met.

 

He has started calling me names lately. I have been called a pig,

a cow, and lastly, a few days back, an orangatan.

I then will  let him know which name he has used, the next day when he has forgotten.

He now has a few more days to figure out if he will stop drinking again (the last time he stayed sober for over two

years) or he is going back to live with his mother. (This is a fate worse than death of course.)

 

It is a good thing that I have spent years working with special populations as a teacher, I have taught music to every kind of student

from the rich and affluent to the poorest innercity, from pre-k to high school and  from learning disabled to severely handicapped to the

exceptionally gifted and to the emotionally disturbed  on suicide watch.

 

I have done in my work but I don't need the drama in my home

where I'm supposed to find some peace.

 

So the skinny little monster has now been given an ultimatum.

 

Suzi 

 

 



----- Original Message ----
From: Vickie Williams <eachdayicryevenmore @yahoo.com>
To: Dercums_Disease@ yahoogroups. com
Sent: Friday, July 25, 2008 2:29:13 PM
Subject: Re: [Dercums_Disease] Re: Having a difficult time with life!

Hi Teri:

 

I am trying but lately I am so tired of all this and my husband.

My husband hates the world and everything with it!

 

I am afraid that one day I will find him dead. Either by a heart attack or by him taking his life.

He is pissed off at GOD for letting this happen to me.  He takes it out on me for being this way. He becomes so hostile some times I am afraid of him.  I walk away because I do not want to hear his BS.  If and when he does work around the house he uses language I do not approve of.  He should know better because he was a hauteur boy when he was younger. 

 

I have been reading the info on Lipomas and found this web site within http://members. tripod.com/ Dercums_Data/ support.html

 

Have you or anyone purchased these vitamins?

Does they work? I found some info regarding some chemical injections.  Does anyone know if this is available and what was the outcome of the study. It does not explain or that I am to absent minded to understand it.. 

 

DISCOVER AND COMPARE  ALTERNATIVE MEDICINE 

TREATMENT OPTIONS FOR

Lipoma

 

 

When the others mention that they have fat fingers are they referencing about DD's or rheumatoid arthritis? I believe I picked up rheumatoid arthritis in my hands. One or fingers pop out of socket and my fingers and between the joints swollen up. This has been going on for at least 4 months now. Sometimes my finger locks up and I drop things. They hurt and my hand does not close all the way when they are like this.  One day one hand will hurt more then the other and then take turns. I get so upset when both hands give me problems.  So is this what the group is talking about? Or do I have rheumatoid arthritis in my hands too!

 

You take care of yourself! May the LORD Be With You!

 

Hugs Vickie



----- Original Message ----
From: Teri <datguise@msn. com>
To: Dercums_Disease@ yahoogroups. com
Sent: Friday, July 25, 2008 1:41:16 PM
Subject: [Dercums_Disease] Re: Is this cyclical?


Hi again

Well here is the brain fog. I ramble.

I also wanted to say that I have started juicing. Also eat organic as
much as possible (always have eaten good food, whole, organic, etc.) I
know I use etc. a lot. IF I drink dairy, it is raw, try to get raw
cheese. I love cheese. Have cut out red meat, mostly, but have to say
though that I am an O blood type and once in a while I think I gotta
have it so if I do it is organic burger (costco has it). Mostly though
for meat, I eat chicken. Try to get organic range chicken, but I will
buy what has been minimum processing without growth hormones,
antibiotics.

Well I think that's all.

Teri

--- In Dercums_Disease@ yahoogroups. com, "Teri" <datguise@.. .> wrote:
>
>
> Hi Dawn
>
> I think we all agree that the flares (growths of new) are in cycles,
but
> the duration and time of the flares could be very individualistic
> depending on lifestyle, stress, progression of the disease/syndrome,
> activity that may set it off for you etc.
>
> I can tell you for me, it started in 2003, after a bad rollover wreck.
> But what really made the suckers come on strong was after therapy was
> all over and I got back to work, the tremendous activity (lasting two
> months) of my job was like an explosion of tumors and symptoms.
>
> I tried many alternatives at the time. I thought if I cleansed my body
> it would get rid of it. It helped for a while. Actually, naively, I
> thought I found the "cure" as I was feeling SSOO much better. The
lumps
> were still there, and the pain of the lumps, but I had energy back and
> my brain back. I'm glad I did not post it. As soon as another round of
> very heavy activity came and I went down hill again. I tried another
> cleanse, but it did not work the next time.
>
> Then, desperate, I tried a gall-bladder purge with olive-oil and
lemon.
> This is like whole lot of olive oil, not a couple tablespoons. This
did
> not work either.
>
> Because my job required constant walking ( I was a power walker, not
> meanderer), lifting, carrying, pushing, pulling, hand work etc, I went
> far down over four years to where I could no longer work. All of it
> progressed the disease. Not to mention the stresses of the job as well
> and many very stressful traumatic events outside of work as well
> (sickness and death of pets, on going foster/adoption of niece -sister
> hates me, another sister had a heart attack, her husband was hit by a
> truck an killed, purse stolen, next night car stolen etc etc.
>
> I tried the pharmecutical route as desperate as we are to function and
> escape the pain and not being able to sleep etc. For me, I stopped
> taking them two years later. Don't take them now, although at this
> point, the pain is almost too much along with no sleep. But I have
> chosen not to take that (pharmecutical) route again. I went through
> physical, mental and emotional side effects. After stopping the meds
> and going through the withdrawl, I never want to have to do that
again.
> From what I read, when you go through the withdrawl, there is a point
> where you are suppose to crave the med. I never had this craving. I
> wanted them out of my body. But then again, from what I read, I was
> experiencing side effects that 3% of people have. I never knew that
> some of the side effects that I had were from the pain meds because
they
> were not listed on the sheets.
>
> Well anyway, now ( since January) I am seeing Naturopaths that
practice
> an integrative approach meaning they use accupunture, Chinese herbs,
> homeopathic medecines, supplements etc. I have given them Dr. Herbst
> info and recommendations and we are using many, but not
pharmecuticals.
> So far, there has been no stopping of growth or weight gain. There
have
> been some more tolerable days and some minutely energetic days, but
once
> I am used up, that is it and I go back to absolutely no energy,
fatigue,
> feeling of weakness etc. My eyes really bother me. Headaches are
> almost daily. Hands are swollen daily. Blah blah blah blah blah.
> Brain fog, sweating, peeing, yada yada yada.
>
> Well this has been very long, but about the cycles I wanted to say
that
> the DD lumps hurt all the time especially the ones that have pressure
> from clothing, others only when leaned on or bumped, but for about 3
> weeks I have had the spasms. I don't know if others have this or not.
> Many of the ones on my torso and even on my legs are spasming (feels
> like someone is grabbing them and squeezing or jabbing them)
>
> I am also having a fast rate of weight in the stomach area and it also
> causes the eating, breathing, again wearing clothing problems.
>
> Sorry this has been so long. I guess it just brought up many thoughts.
>
> I thought I had tried some pretty adventersome stuff. My stepfather
> used DMSO on his tendonitis. He swore by it.
>
> I have tried drinking food grade hydrogen peroxide ( the way you are
> suppose to do it, BEWARE). I was not consitent. I don't know if the
> support group has still been trying this, but Dr. Karen and others
> talked about using food grade hydrogen peroxide in the bath as that
was
> suppose to absorb into the body and oxygenate. I think you use epson
> salts first and soak in that and then add the diluted hydrogen
peroxide.
>
> I have also use aromatherapy in the bath and epson salts hot baths are
a
> staple.
>
> Well all, it is sunny and nice here today. Thank God! I can't stand
> the cold and get sick and worse. Here in Western Washington it seems
> like you can't have a consistent nice summer anymore, but then, where
is
> the weather normal anymore.
>
> I will stop now.
>
> Hugs and spoons around.
>
> Teri
>
>
>
> --- In Dercums_Disease@ yahoogroups. com, "dawnriser44" dawnriser44@
> wrote:
> >
> > Does Dercum's flare up and down in cycles? For me, it just started
> > about a year ago with some initial lumps and but then in the last 2
> > months I have been getting new ones every day. I wake up and find
more
> > and more lumps and its to the point where I would be unable to count
> > them all - there are literally hundreds of them.
> >
> > What I wonder is if Dercum's is like other autoimmune disease where
it
> > might have a very active time and other times when its inactive or
> > dormant. Also, has anyone ever used prednisone to treat Dercum's -
> > either topically or orally and did it help?
> >
>








#26227 From: "Sharon" <skippy@...>
Date: Thu Jul 31, 2008 6:04 pm
Subject: Re: Is this cyclical?
skippyshaz
Offline Offline
Send Email Send Email
 
--- In Dercums_Disease@yahoogroups.com, "dawnriser44"
<dawnriser44@...> wrote:
>
>
Hi Dawn, well mine certainly does!  I definitely have 'flares' and
had a very nasty one last year which involved my face as I had palsy
on the left side and my 'lumps' and fat were excruciatingly painful
and with it I get terrible brain fog.  Fortunately over time it
abated and unfortunately I was prescribed steroids to try and clear
it all up.  (have since found this not to be a good idea).  I was in
so much pain that I had to be on morhpine and my doc wanted me
hospitalised, but I couldn't see the point as there is no one in the
UK, let alone where I live that knows about Dercum's!  I was
diagnosed by GP over 2 years ago after him extensively researching
all options (he's a trained surgeon too and took a biopsy of a
lipoma).

Fortunately my flare went after about 4 weeks and it took a few more
weeks to get back on track.  I have to pace my life as I find if I do
too much I am just inviting a flare to happen!  My doc knows that I
will continue to have flares in the future and we will deal with them
when they happen.  My neuro wants me in hosp next flare to do a
lumbar puncture when my Dercum's is in full flare or 'live' as he
calls it, just to rule out any other nasties that the facial palsy
could be.

Anyway, that's my dercum's and everyone is so different.

Good luck with everything
All the best
Gentle hugs
Skip






Does Dercum's flare up and down in cycles?  For me, it just started
> about a year ago with some initial lumps and but then in the last 2
> months I have been getting new ones every day.  I wake up and find
more
> and more lumps and its to the point where I would be unable to
count
> them all - there are literally hundreds of them.
>
> What I wonder is if Dercum's is like other autoimmune disease where
it
> might have a very active time and other times when its inactive or
> dormant.  Also, has anyone ever used prednisone to treat Dercum's -
> either topically or orally and did it help?
>

#26226 From: "Cynthia" <c_prentice2003@...>
Date: Thu Jul 31, 2008 5:52 pm
Subject: Re: HGH experiences?
c_prentice2003
Offline Offline
Send Email Send Email
 
Hi,

I have been on HGH for nine months now and although it has taken all
this time to get to what looks as if it is going to be my "normal dose"
it has to be done very carefully but a highly proficient lab - as the
dosing can tip anybody into a condition called Agromegaly......

To be honest, I have not noticed much difference at all when it comes
to DD but it has changed the quality of my life in that I was so badly
lacking in it before. I have also managed to lose a little weight
without dieting as it is essential in lipis metabolism.

What levels do you have right now? Who decided that you should try HGH
because if you do not need it - make sure you know what you doing !!!
They do say that it can help with the aging process but in Great
Britain they will not give you it for that !!!

You have to inject yourself every day at the same time and the product
has to be kept in the fridge..... so it can be complicated to travel
etc.

Let us know how you get on !

Cynthia

--- In Dercums_Disease@yahoogroups.com, "dorcasat" <dorcasat@...> wrote:
>
> I am getting ready to try HGH injections, but was wondering what
> results anyone has had.  I saw some older posts, but was hoping for
> updates.
> Also, what dosage did you receive?  Was the dosge varied depending on
> your lab results?  Was it daily injections?
>
> I would LOVE indepth descriptions; if you prefer, you can email me.
>
> Thank you very much.
>
> ~Dorcas~
>

#26225 From: Pamela Harrison <ozziespamela@...>
Date: Thu Jul 31, 2008 2:01 pm
Subject: Re: Re: Weight reduction
ozziespamela
Offline Offline
Send Email Send Email
 
Vickie,
My heart goes out to you! What a rough life you've had! I can understand why you are so depressed, especially with the loss of your son.
Hugs and spoons to you,
Pamela




#26224 From: Karen Krzeminski <kamperk06@...>
Date: Thu Jul 31, 2008 1:36 am
Subject: RE: HGH experiences?
aqua12062
Offline Offline
Send Email Send Email
 
Keep me posted because I saw the older posts on good successes with HGH!!!
Karen K.
Lake Havasu City, AZ

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





To: Dercums_Disease@yahoogroups.com
From: dorcasat@...
Date: Thu, 31 Jul 2008 01:27:47 +0000
Subject: [Dercums_Disease] HGH experiences?


I am getting ready to try HGH injections, but was wondering what
results anyone has had. I saw some older posts, but was hoping for
updates.
Also, what dosage did you receive? Was the dosge varied depending on
your lab results? Was it daily injections?

I would LOVE indepth descriptions; if you prefer, you can email me.

Thank you very much.

~Dorcas~




Keep your kids safer online with Windows Live Family Safety. Help protect your kids.

#26223 From: "dorcasat" <dorcasat@...>
Date: Thu Jul 31, 2008 1:27 am
Subject: HGH experiences?
dorcasat
Offline Offline
Send Email Send Email
 
I am getting ready to try HGH injections, but was wondering what
results anyone has had.  I saw some older posts, but was hoping for
updates.
Also, what dosage did you receive?  Was the dosge varied depending on
your lab results?  Was it daily injections?

I would LOVE indepth descriptions; if you prefer, you can email me.

Thank you very much.

~Dorcas~

#26220 From: "placidcharmer" <placidcharmer@...>
Date: Wed Jul 30, 2008 6:19 pm
Subject: Re: Dercum's Hope Domain Name
placidcharmer
Offline Offline
Send Email Send Email
 
I think that why you are getting the whois website is because that is
whom she has the domain with.  I have a domain on domain.com and it is
registered with.  I think that if they get in touch with the domain
company that they went through we can get it back.  They just block
the page that it points to until the bill is paid.

I think this is what is happening and hope it is all it is.

--- In Dercums_Disease@yahoogroups.com, "Cynthia" <c_prentice2003@...>
wrote:
>
>
> --- In Dercums_Disease@yahoogroups.com, "Will - I - Am" <waksmf@>
> wrote:
> >
> > Howdy folks,  I did some quick research on the 'net and it seems that
> a
> > corporation named "Whois Privacy Protection Services, Inc." is the
> agent for
> > the person, people or company that snapped up the domain name
> "Dercum's
> > Hope.org" on July 23, 2008.  This company might act as a go-between
> for the
> > new owner and anyone trying to contact that owner.  The domain
> directory
> > lists them as the registrant so they might be the new owner.  I am not
> > knowledgeable in this area.  The address for them is:
> >
> >
> >
> > Whois Privacy Protection Services, Inc.
> >
> > P.O. Box 841
> >
> > Yarmouth, NS
> >
> > Canada   B5A 4K5
> >
> >
> >
> > Telephone #:  1-902-749-2060
> >
> >
> >
> > E-mail:  gnqlkpyjk@
> >
> >
> >
> > As I understand it, we can reach out to these folks via e-mail, but
> they get
> > a lot of SPAM, so they might not look at anything we send.  If they
> started
> > to receive a bunch of e-mails with the same subject line they might
> > recognize us.  I do not know what we could do with the name if we
> wrested it
> > from their grasp.  The company does not have the best reputation in my
> > opinion.
> >
> >
> >
> > They could be in the business of registering web site names and
> selling them
> > at a profit.  People/corporations from Carnie Wilson (actress, singer,
> talk
> > show host) to Polaris Inc. took them to arbitration or sued in US
> federal
> > court to get the name they registered, like "CarnieWilson.com."  In
> some
> > cases they failed to respond concerning trademark infringement or
> using the
> > domain name in bad faith.  I do not think that Dercum's Hope is a
> trademark.
> > Using the name for sales of hobby, pet and bridal materials might
> qualify as
> > using the name in bad faith.  I think that the ways to get the name
> might be
> > buying it, suing for it or taking them to arbitration for using it in
> bad
> > faith.  I studied intellectual property in school, but that was a long
> time
> > ago and the rules have changed.  I am not familiar with the internet
> > protocols.  Does anyone know more or know someone who knows more about
> this
> > than I do?
> >
> >
> >
> > Now I have to add my disclaimer - "This material is for information
> purposes
> > only and is not to be construed as legal advice in any form.  For such
> legal
> > advice on this matter please contact a licensed attorney in your
> > jurisdiction.  No attorney-client relationship exists within or
> without the
> > scope of this e-mail."  Remember, legal information is generally worth
> what
> > you pay for it, and this information is free.
> >
> >
> >
> > Well, that's my bit on this matter.  Ciao mein! --- Will - I - Am (not
> happy
> > about this instance of what might be cyber squatting)
> >
>

#26219 From: Karen Krzeminski <kamperk06@...>
Date: Wed Jul 30, 2008 1:22 am
Subject: RE: Re: Weight reduction
aqua12062
Offline Offline
Send Email Send Email
 
It's my understanding and my doctors understanding as well that there are a few different types of Dercums. I was diagnosed with adiposis dolorosa type 3 which does not include obesity as a symptom. My surgeon that used to remove some of the tumors and did my initial biopsy said I COULDN'T HAVE dercums because I'm not obese! But my blood tests and the results of the biopsies all said Dercums to my new doctor! High white blood cell count with intermittent fevers, a slightly high cholesterol count although I eat healthy and several others I can't remember! Yes, I get brain fog too! I'm high functioning as well. I work fulltime and do stuff around the house etc. go to college too.
There are different levels of this disease. We got the luckier of them I suppose because we can function okay! Doesn't mean we hurt any less though! I have days where the ring around my back and hips hurts so bad I can barely sit down!! I have days where my wrists hurt so bad I can barely write!!! Then the ones in my fatty palms...YEOW! Sometimes it's unbearable. I take tramadol and vicatin for breakthrough pain like that.
 
Karen K.
Lake Havasu City, AZ
 


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






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#26218 From: "Karen Herbst" <kaherbst@...>
Date: Tue Jul 29, 2008 10:49 pm
Subject: Re: Earthquake Out West How is Dr. Herbst?
contactforms...
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Send Email Send Email
 
I'm good.  barely felt it.

On 7/29/08, nomadeclipse <nomadeclipse@...> wrote:

5.8 Earthquake 90 miles from Dr. Herbst.

Does anyone know she is ok?

Rodney



#26217 From: "nonny46" <nonny46@...>
Date: Tue Jul 29, 2008 10:36 pm
Subject: Re: Weight reduction
nonny46
Offline Offline
Send Email Send Email
 
Hi Vickie,

Since mid-April I have lost nearly 40 lbs.!  I started taking noni
capsules, but just last week switched to the juice, as I found some
that is raspberry flavored and tastes good.  I also take grapeseed
extract.  I don't eat any starch, sugar, or dairy products.  Mostly
lean protein, eggs, veggies, fruit, and lots of water.  I have oatmeal
(steel-cut) 2-3 times a week.  I do a relatively easy workout 40
minutes a day, 5-6 days a week.  It involves walking on the treadmill,
riding a recumbent stationary bike, and using the elliptical trainer.
I started out very slowly and have built up to where there is little or
no pain either during or after the exercise.  I swim as often as I am
able.

I'm 62 years young, married and care for my husband who has
Parkinson's, I do all the housework, yard work, cooking, and take care
of our 5 grandkids once a week.  The babysitting tires me out worse
than anything, but that is 11 hours in a house with four 5-year olds,
an 8-year old, 3 cats, and a Siberian Husky.  Having Dercum's for
probably most of my adult life, though I only was diagnosed 5 years
ago, has definitely NOT put an end to my life, though I have had to do
things more slowly, more carefully, and take days in between to rest
and recover.  I don't know what my BMI was in April, but it must have
been high.  I am 5'9, and weighed 227, pre-diabetic, with high
cholesterol and signs of early heart disease.  I am now 189, blood
sugar normal, cholesterol normal, and healthy heart.

We're all different, and DD affects us all differently.  Some struggle
to keep from gaining weight, some are thin, some are extremely limited
in their ability to do things, while others are quite active.  I am
only sharing my personal experience to illustrate the positive side of
this disease (if it has one!)

Judi
>
> Can anyone tell me that they have lost weight when their BMI is over
30%?
>  
> If so can you tell me what you did to lose that weight?
>  
> I would appreciate an answer from anyone!!
>  
> Hugs Vickie
>

#26216 From: "nomadeclipse" <nomadeclipse@...>
Date: Tue Jul 29, 2008 7:24 pm
Subject: Earthquake Out West How is Dr. Herbst?
nomadeclipse
Offline Offline
Send Email Send Email
 
5.8 Earthquake 90 miles from Dr. Herbst.



Does anyone know she is ok?


Rodney

#26215 From: "Cynthia" <c_prentice2003@...>
Date: Tue Jul 29, 2008 6:07 pm
Subject: Re: Dercum's Hope Domain Name
c_prentice2003
Offline Offline
Send Email Send Email
 
Wow - so where did my message go to??

I was just saying that having talked to Dora last week, she confirmed
that the payment scheme for the site name was still up and running
and she was investigating....

I also said that perhaps a change of name could be used instead of
paying some unscrupulous company to get it back, which we could
easily advertise across all the support sites as well as the Lipoma
Forum too.

Hugs,

Cynthia

--- In Dercums_Disease@yahoogroups.com, "Cynthia"
<c_prentice2003@...> wrote:
>
>
> --- In Dercums_Disease@yahoogroups.com, "Will - I - Am" <waksmf@>
> wrote:
> >
> > Howdy folks,  I did some quick research on the 'net and it seems
that
> a
> > corporation named "Whois Privacy Protection Services, Inc." is the
> agent for
> > the person, people or company that snapped up the domain name
> "Dercum's
> > Hope.org" on July 23, 2008.  This company might act as a go-
between
> for the
> > new owner and anyone trying to contact that owner.  The domain
> directory
> > lists them as the registrant so they might be the new owner.  I
am not
> > knowledgeable in this area.  The address for them is:
> >
> >
> >
> > Whois Privacy Protection Services, Inc.
> >
> > P.O. Box 841
> >
> > Yarmouth, NS
> >
> > Canada   B5A 4K5
> >
> >
> >
> > Telephone #:  1-902-749-2060
> >
> >
> >
> > E-mail:  gnqlkpyjk@
> >
> >
> >
> > As I understand it, we can reach out to these folks via e-mail,
but
> they get
> > a lot of SPAM, so they might not look at anything we send.  If
they
> started
> > to receive a bunch of e-mails with the same subject line they
might
> > recognize us.  I do not know what we could do with the name if we
> wrested it
> > from their grasp.  The company does not have the best reputation
in my
> > opinion.
> >
> >
> >
> > They could be in the business of registering web site names and
> selling them
> > at a profit.  People/corporations from Carnie Wilson (actress,
singer,
> talk
> > show host) to Polaris Inc. took them to arbitration or sued in US
> federal
> > court to get the name they registered, like "CarnieWilson.com."
In
> some
> > cases they failed to respond concerning trademark infringement or
> using the
> > domain name in bad faith.  I do not think that Dercum's Hope is a
> trademark.
> > Using the name for sales of hobby, pet and bridal materials might
> qualify as
> > using the name in bad faith.  I think that the ways to get the
name
> might be
> > buying it, suing for it or taking them to arbitration for using
it in
> bad
> > faith.  I studied intellectual property in school, but that was a
long
> time
> > ago and the rules have changed.  I am not familiar with the
internet
> > protocols.  Does anyone know more or know someone who knows more
about
> this
> > than I do?
> >
> >
> >
> > Now I have to add my disclaimer - "This material is for
information
> purposes
> > only and is not to be construed as legal advice in any form.  For
such
> legal
> > advice on this matter please contact a licensed attorney in your
> > jurisdiction.  No attorney-client relationship exists within or
> without the
> > scope of this e-mail."  Remember, legal information is generally
worth
> what
> > you pay for it, and this information is free.
> >
> >
> >
> > Well, that's my bit on this matter.  Ciao mein! --- Will - I - Am
(not
> happy
> > about this instance of what might be cyber squatting)
> >
>

#26214 From: "Cynthia" <c_prentice2003@...>
Date: Tue Jul 29, 2008 6:04 pm
Subject: Re: Dercum's Hope Domain Name
c_prentice2003
Offline Offline
Send Email Send Email
 
--- In Dercums_Disease@yahoogroups.com, "Will - I - Am" <waksmf@...>
wrote:
>
> Howdy folks,  I did some quick research on the 'net and it seems that
a
> corporation named "Whois Privacy Protection Services, Inc." is the
agent for
> the person, people or company that snapped up the domain name
"Dercum's
> Hope.org" on July 23, 2008.  This company might act as a go-between
for the
> new owner and anyone trying to contact that owner.  The domain
directory
> lists them as the registrant so they might be the new owner.  I am not
> knowledgeable in this area.  The address for them is:
>
>
>
> Whois Privacy Protection Services, Inc.
>
> P.O. Box 841
>
> Yarmouth, NS
>
> Canada   B5A 4K5
>
>
>
> Telephone #:  1-902-749-2060
>
>
>
> E-mail:  gnqlkpyjk@...
>
>
>
> As I understand it, we can reach out to these folks via e-mail, but
they get
> a lot of SPAM, so they might not look at anything we send.  If they
started
> to receive a bunch of e-mails with the same subject line they might
> recognize us.  I do not know what we could do with the name if we
wrested it
> from their grasp.  The company does not have the best reputation in my
> opinion.
>
>
>
> They could be in the business of registering web site names and
selling them
> at a profit.  People/corporations from Carnie Wilson (actress, singer,
talk
> show host) to Polaris Inc. took them to arbitration or sued in US
federal
> court to get the name they registered, like "CarnieWilson.com."  In
some
> cases they failed to respond concerning trademark infringement or
using the
> domain name in bad faith.  I do not think that Dercum's Hope is a
trademark.
> Using the name for sales of hobby, pet and bridal materials might
qualify as
> using the name in bad faith.  I think that the ways to get the name
might be
> buying it, suing for it or taking them to arbitration for using it in
bad
> faith.  I studied intellectual property in school, but that was a long
time
> ago and the rules have changed.  I am not familiar with the internet
> protocols.  Does anyone know more or know someone who knows more about
this
> than I do?
>
>
>
> Now I have to add my disclaimer - "This material is for information
purposes
> only and is not to be construed as legal advice in any form.  For such
legal
> advice on this matter please contact a licensed attorney in your
> jurisdiction.  No attorney-client relationship exists within or
without the
> scope of this e-mail."  Remember, legal information is generally worth
what
> you pay for it, and this information is free.
>
>
>
> Well, that's my bit on this matter.  Ciao mein! --- Will - I - Am (not
happy
> about this instance of what might be cyber squatting)
>

#26213 From: "Will - I - Am" <waksmf@...>
Date: Tue Jul 29, 2008 4:00 pm
Subject: Dercum's Hope Domain Name
waksmf1984
Offline Offline
Send Email Send Email
 

Howdy folks,  I did some quick research on the ‘net and it seems that a corporation named “Whois Privacy Protection Services, Inc.” is the agent for the person, people or company that snapped up the domain name “Dercum’s Hope.org” on July 23, 2008.  This company might act as a go-between for the new owner and anyone trying to contact that owner.  The domain directory lists them as the registrant so they might be the new owner.  I am not knowledgeable in this area.  The address for them is:

 

Whois Privacy Protection Services, Inc.

P.O. Box 841

Yarmouth, NS

Canada   B5A 4K5

 

Telephone #:  1-902-749-2060

 

E-mail:  gnqlkpyjk@...

 

As I understand it, we can reach out to these folks via e-mail, but they get a lot of SPAM, so they might not look at anything we send.  If they started to receive a bunch of e-mails with the same subject line they might recognize us.  I do not know what we could do with the name if we wrested it from their grasp.  The company does not have the best reputation in my opinion. 

 

They could be in the business of registering web site names and selling them at a profit.  People/corporations from Carnie Wilson (actress, singer, talk show host) to Polaris Inc. took them to arbitration or sued in US federal court to get the name they registered, like “CarnieWilson.com.”  In some cases they failed to respond concerning trademark infringement or using the domain name in bad faith.  I do not think that Dercum’s Hope is a trademark.  Using the name for sales of hobby, pet and bridal materials might qualify as using the name in bad faith.  I think that the ways to get the name might be buying it, suing for it or taking them to arbitration for using it in bad faith.  I studied intellectual property in school, but that was a long time ago and the rules have changed.  I am not familiar with the internet protocols.  Does anyone know more or know someone who knows more about this than I do?

 

Now I have to add my disclaimer – “This material is for information purposes only and is not to be construed as legal advice in any form.  For such legal advice on this matter please contact a licensed attorney in your jurisdiction.  No attorney-client relationship exists within or without the scope of this e-mail.”  Remember, legal information is generally worth what you pay for it, and this information is free.

 

Well, that’s my bit on this matter.  Ciao mein! --- Will – I – Am (not happy about this instance of what might be cyber squatting)

 


#26212 From: Suzi More <suzimore92@...>
Date: Tue Jul 29, 2008 2:11 am
Subject: Re: Re: Having a difficult time with life!
suzisblue
Offline Offline
Send Email Send Email
 
Thank you Vicky for this reply, at the moment it would be tough to leave him because my health is declining,
I am actually in some steep debt for one more year and he always comes back and is sorry, he must stop
drinking and is saying he will. I know the old once an alcoholic always an alcoholic thing is true but he stopped
for two whole years and has been bad for one year now,  I want to see him do it again and if not, he needs to get help.
Suzi

 

----- Original Message ----
From: Vickie Williams <eachdayicryevenmore@...>
To: Dercums_Disease@yahoogroups.com
Sent: Sunday, July 27, 2008 11:16:47 AM
Subject: Re: [Dercums_Disease] Re: Having a difficult time with life!

You want a reply? If it was me I would tell the boyfriend to go home to his mother!
 
But that is me! You have a paying job and you seem to have your head together.
Why would you what someone to drag you down? Do you have children with this man?
What is the reason you keep him around? I once had a man like that and I was married to him
so I pretended I was cheating on him. It worked! He got pissed off and left. We had been
married only 3 months. Why I did marry him I don't know why? It was the prime of my life and
I was tired of being alone.  But, in the long run I was still alone.  He liked his beer more than he
loved me.
 
Pretending that I was involved with someone was the wrong thing for me to do.  I was lucky he
did not bet on me. You have to decide that the relationship you are in is going anywhere. Once
an alcoholic always an alcoholic. I had that experience and I will not go through it again. If he stops
drinking he will always want to drink again and you will have that problem with you the rest of your life.
 
Ask yourself if you want to live like that for the rest of your life?
 
I ask myself the same thing with my husband. Why do I want to stay with a man that has temper
fits.  Can not hear me at times. Claims it's his hearing. He gets it from his mother who has lost her hearing. The other siblings has that problem too! But sometimes I feel it chooses not to hear. We did not have any children together. So why do I stay.  I have disability.  I truly feel that once you are married in the Lord's eyes you should work things out.  The vow "For better of worst until death we do part". and the fact I can not make it on my own.  Poor excuse uh? The for better or worst is the may factor here!
 
My husband has been good to me when I needed him in the past. I should not leave him when he is having a depression of his own. Thank God he does not call me names. I am down right now I can not say what I would do if he called me names.
 
Hugs Vickie
 
 

 
----- Original Message ----
From: Suzi More <suzimore92@yahoo. com>
To: Dercums_Disease@ yahoogroups. com
Sent: Saturday, July 26, 2008 9:32:54 PM
Subject: Re: [Dercums_Disease] Re: Having a difficult time with life!

Dear Teri,

 

My boyfriend of ten years tells me to tell everyone who asks me that I am "just fine"

he then gets mad a few times a week, drinks too much and gets nasty, he is mad that I have gained over 80 lbs and he

reminds me that he hasn't gained an ounce since we met.

 

He has started calling me names lately. I have been called a pig,

a cow, and lastly, a few days back, an orangatan.

I then will  let him know which name he has used, the next day when he has forgotten.

He now has a few more days to figure out if he will stop drinking again (the last time he stayed sober for over two

years) or he is going back to live with his mother. (This is a fate worse than death of course.)

 

It is a good thing that I have spent years working with special populations as a teacher, I have taught music to every kind of student

from the rich and affluent to the poorest innercity, from pre-k to high school and  from learning disabled to severely handicapped to the

exceptionally gifted and to the emotionally disturbed  on suicide watch.

 

I have done in my work but I don't need the drama in my home

where I'm supposed to find some peace.

 

So the skinny little monster has now been given an ultimatum.

 

Suzi 

 

 



----- Original Message ----
From: Vickie Williams <eachdayicryevenmore @yahoo.com>
To: Dercums_Disease@ yahoogroups. com
Sent: Friday, July 25, 2008 2:29:13 PM
Subject: Re: [Dercums_Disease] Re: Having a difficult time with life!

Hi Teri:

 

I am trying but lately I am so tired of all this and my husband.

My husband hates the world and everything with it!

 

I am afraid that one day I will find him dead. Either by a heart attack or by him taking his life.

He is pissed off at GOD for letting this happen to me.  He takes it out on me for being this way. He becomes so hostile some times I am afraid of him.  I walk away because I do not want to hear his BS.  If and when he does work around the house he uses language I do not approve of.  He should know better because he was a hauteur boy when he was younger. 

 

I have been reading the info on Lipomas and found this web site within http://members. tripod.com/ Dercums_Data/ support.html

 

Have you or anyone purchased these vitamins?

Does they work? I found some info regarding some chemical injections.  Does anyone know if this is available and what was the outcome of the study. It does not explain or that I am to absent minded to understand it.. 

 

DISCOVER AND COMPARE  ALTERNATIVE MEDICINE 

TREATMENT OPTIONS FOR

Lipoma

 

 

When the others mention that they have fat fingers are they referencing about DD's or rheumatoid arthritis? I believe I picked up rheumatoid arthritis in my hands. One or fingers pop out of socket and my fingers and between the joints swollen up. This has been going on for at least 4 months now. Sometimes my finger locks up and I drop things. They hurt and my hand does not close all the way when they are like this.  One day one hand will hurt more then the other and then take turns. I get so upset when both hands give me problems.  So is this what the group is talking about? Or do I have rheumatoid arthritis in my hands too!

 

You take care of yourself! May the LORD Be With You!

 

Hugs Vickie



----- Original Message ----
From: Teri <datguise@msn. com>
To: Dercums_Disease@ yahoogroups. com
Sent: Friday, July 25, 2008 1:41:16 PM
Subject: [Dercums_Disease] Re: Is this cyclical?


Hi again

Well here is the brain fog. I ramble.

I also wanted to say that I have started juicing. Also eat organic as
much as possible (always have eaten good food, whole, organic, etc.) I
know I use etc. a lot. IF I drink dairy, it is raw, try to get raw
cheese. I love cheese. Have cut out red meat, mostly, but have to say
though that I am an O blood type and once in a while I think I gotta
have it so if I do it is organic burger (costco has it). Mostly though
for meat, I eat chicken. Try to get organic range chicken, but I will
buy what has been minimum processing without growth hormones,
antibiotics.

Well I think that's all.

Teri

--- In Dercums_Disease@ yahoogroups. com, "Teri" <datguise@.. .> wrote:
>
>
> Hi Dawn
>
> I think we all agree that the flares (growths of new) are in cycles,
but
> the duration and time of the flares could be very individualistic
> depending on lifestyle, stress, progression of the disease/syndrome,
> activity that may set it off for you etc.
>
> I can tell you for me, it started in 2003, after a bad rollover wreck.
> But what really made the suckers come on strong was after therapy was
> all over and I got back to work, the tremendous activity (lasting two
> months) of my job was like an explosion of tumors and symptoms.
>
> I tried many alternatives at the time. I thought if I cleansed my body
> it would get rid of it. It helped for a while. Actually, naively, I
> thought I found the "cure" as I was feeling SSOO much better. The
lumps
> were still there, and the pain of the lumps, but I had energy back and
> my brain back. I'm glad I did not post it. As soon as another round of
> very heavy activity came and I went down hill again. I tried another
> cleanse, but it did not work the next time.
>
> Then, desperate, I tried a gall-bladder purge with olive-oil and
lemon.
> This is like whole lot of olive oil, not a couple tablespoons. This
did
> not work either.
>
> Because my job required constant walking ( I was a power walker, not
> meanderer), lifting, carrying, pushing, pulling, hand work etc, I went
> far down over four years to where I could no longer work. All of it
> progressed the disease. Not to mention the stresses of the job as well
> and many very stressful traumatic events outside of work as well
> (sickness and death of pets, on going foster/adoption of niece -sister
> hates me, another sister had a heart attack, her husband was hit by a
> truck an killed, purse stolen, next night car stolen etc etc.
>
> I tried the pharmecutical route as desperate as we are to function and
> escape the pain and not being able to sleep etc. For me, I stopped
> taking them two years later. Don't take them now, although at this
> point, the pain is almost too much along with no sleep. But I have
> chosen not to take that (pharmecutical) route again. I went through
> physical, mental and emotional side effects. After stopping the meds
> and going through the withdrawl, I never want to have to do that
again.
> From what I read, when you go through the withdrawl, there is a point
> where you are suppose to crave the med. I never had this craving. I
> wanted them out of my body. But then again, from what I read, I was
> experiencing side effects that 3% of people have. I never knew that
> some of the side effects that I had were from the pain meds because
they
> were not listed on the sheets.
>
> Well anyway, now ( since January) I am seeing Naturopaths that
practice
> an integrative approach meaning they use accupunture, Chinese herbs,
> homeopathic medecines, supplements etc. I have given them Dr. Herbst
> info and recommendations and we are using many, but not
pharmecuticals.
> So far, there has been no stopping of growth or weight gain. There
have
> been some more tolerable days and some minutely energetic days, but
once
> I am used up, that is it and I go back to absolutely no energy,
fatigue,
> feeling of weakness etc. My eyes really bother me. Headaches are
> almost daily. Hands are swollen daily. Blah blah blah blah blah.
> Brain fog, sweating, peeing, yada yada yada.
>
> Well this has been very long, but about the cycles I wanted to say
that
> the DD lumps hurt all the time especially the ones that have pressure
> from clothing, others only when leaned on or bumped, but for about 3
> weeks I have had the spasms. I don't know if others have this or not.
> Many of the ones on my torso and even on my legs are spasming (feels
> like someone is grabbing them and squeezing or jabbing them)
>
> I am also having a fast rate of weight in the stomach area and it also
> causes the eating, breathing, again wearing clothing problems.
>
> Sorry this has been so long. I guess it just brought up many thoughts.
>
> I thought I had tried some pretty adventersome stuff. My stepfather
> used DMSO on his tendonitis. He swore by it.
>
> I have tried drinking food grade hydrogen peroxide ( the way you are
> suppose to do it, BEWARE). I was not consitent. I don't know if the
> support group has still been trying this, but Dr. Karen and others
> talked about using food grade hydrogen peroxide in the bath as that
was
> suppose to absorb into the body and oxygenate. I think you use epson
> salts first and soak in that and then add the diluted hydrogen
peroxide.
>
> I have also use aromatherapy in the bath and epson salts hot baths are
a
> staple.
>
> Well all, it is sunny and nice here today. Thank God! I can't stand
> the cold and get sick and worse. Here in Western Washington it seems
> like you can't have a consistent nice summer anymore, but then, where
is
> the weather normal anymore.
>
> I will stop now.
>
> Hugs and spoons around.
>
> Teri
>
>
>
> --- In Dercums_Disease@ yahoogroups. com, "dawnriser44" dawnriser44@
> wrote:
> >
> > Does Dercum's flare up and down in cycles? For me, it just started
> > about a year ago with some initial lumps and but then in the last 2
> > months I have been getting new ones every day. I wake up and find
more
> > and more lumps and its to the point where I would be unable to count
> > them all - there are literally hundreds of them.
> >
> > What I wonder is if Dercum's is like other autoimmune disease where
it
> > might have a very active time and other times when its inactive or
> > dormant. Also, has anyone ever used prednisone to treat Dercum's -
> > either topically or orally and did it help?
> >
>






#26211 From: Suzi More <suzimore92@...>
Date: Tue Jul 29, 2008 2:06 am
Subject: Re: Re: Having a difficult time with life!
suzisblue
Offline Offline
Send Email Send Email
 
I know, I know, but then the little creep comes in like a puppy with his tail between his legs and
begs forgiveness. This is a hard call because I like seeing a man beg. (Sorry Guys)
He is worth getting some help, remember, he cooks, cleans, shops and pays more than half the bills.
And, he is better than my family who all think I am made of money because I teach even if I have
told them that I have an ourstanding pension loan that is killing me till it's over next June and even
my bipolar daughter got mad when I asked her to pay me the rent to my condo on time so I could
pay my bills on it on time. At this point I just keep praying one of these beautiful guys she goes out
with would marry her and take her off my hands for good.
 
Yesterday was a very busy day in that I went to NYC for a visit with a friend, a voice teacher who is
88 and can still sing beautifully, I wanted him to hear and comment on two young baritones, students
that I have had for five years (now in college) and this took an hour or so to get there, two hours to
visit and an hour to drive home. 
 
This did me in .
 
Today, I could not get out of bed, the pain in my hands was so bad, the migraine on one side of my
head was killing me and it took hours for me to get up, I did a cocktail of acai, mangosteen,
pomegranate and noni juices. Then I went back to bed. An hour later, I got up and made coffee,
once or twice a day I have a cup and took my regular meds. I went back to lay down, I got up a
little later and had cereal with yogurt and MCT on it. I then took my vitamins and supplements of flax,
codliveroil, grapeseedextract, vitamin D3 (3000 units) and rested the whole day.
 
 I  did laundry all day and lay down for a half hour or hour at a time.
My feet hurt and were cold, so were my hands.
 
When Myron came home from work he found me in the bedroom on the
sleepap machine all covered up with blankets and no air conditioning on.
I felt rotten and he was worried. And was sorry.
It is bad enough when he flips out but he cannot stand to see this.
 
What is worse ?
 
Well meaning people like my mother the Christian Scientist who wouldn't take me to the doctor when I was
sick with a leg infection of osteomyelitis and I would yell in pain at night when I would wake up with the
horrible throbbing and I was only ten years old. Thank God my father was a Catholic and took me to the
doctor after three weeks of this. She had been praying and reading Science and Health thinking I would
 be healed.
 
Even now, there is no one to talk to at either of my jobs (the regular school or the art school) because
they think I am a hypochondriac. They joke about it.
 
Only now, at my doctors offices do they take me seriously. This is after the plastic surgeon has found tumors
in my abdomen exactly where I told him they would be and this is after two surgeries and nine lipomas from
the size of nasty little angios to the size of golf balls. As well as tumors out of my ankles last year which drained
for four months and nasty little angios in my back four places removed by my derm in addition to a rotten angio
in my thigh causing excruciating pain that felt like sciatica but down the front of the leg and not the back.
 
Only after the primary, the plastic surgeon, the regular surgeon and the rheumatologist read the literature from
Dr. Herbst and the web articles, did anyone start to believe I was really sick. even the dermatologist refused to
read anything, he said he was too old and ready to retire and didn't need to learn anything new!
Can you believe that?
 
The worst treatment I have received was not from Myron but from a surgeon who constantly told me I could live
with these tumors, they were nothing (he had already taken a big one the size of a lemon out of my gut that he
mentioned had "hairs on it" but since it wasn't cancer,  I had wasted his time.)
 
Meanwhile, the tumors in the back of my head are still growing.
But the neurologist says they aren't causing my headaches. Huh? What is then? 
 
Suzi

----- Original Message ----
From: Judith <poeticusmaximus@...>
To: Dercums_Disease@yahoogroups.com
Sent: Sunday, July 27, 2008 10:47:55 AM
Subject: [Dercums_Disease] Re: Having a difficult time with life!

Ultimatum, schmultimatum! I'd hand him his hat and tell him never to
darken my doorway again!! Any change that he made due to an ultimatum
would be very temporary. In a week he would simply revert to type and
you'd have to gp through all that drama again. The build up, the blow
up, the fold up and the make up. Who needs that?? We have enough
pain in our lives. If you ain't legally tied to the creep, ditch him
like he was a mangy stray. How much else are we expected to accept in
our pain filled lives?

Whatever transformation this disease puts us through on the outside,
we are still fine women on the inside: Compassionate, intelligent,
kind, capable, wise - very wise, because we have had to learn to live
within parameters that change monthly, weekly and sometimes daily,
strong...

He couldn't live with what you are living with. He'd fold up like
yesterday's dirty diaper!

It is one thing being alone. It is quite another being in a
relationship and STILL being alone. Because if a man should behave
compassionately or express interest in getting to know you better (in
spite of you body. I mean, there are deep men out there who can see
past a disease like this)you can't because you have this mean
spirited albatross around your neck, or, another image, a nasty
little monkey on your back - that won't be sweet and won't get off.
Just stays up there and poops, scratches, pulls your hair and bites.

I am sorry if I offend. This is none of my business. I just couldn't
help reacting.

Gentle hugs,

Poe



#26210 From: Debra Lehn <ffloral28@...>
Date: Tue Jul 29, 2008 1:28 am
Subject: Re: dercumshope.org
ffloral28
Offline Offline
Send Email Send Email
 

Hi Don,

Thanks for letting me know. I was diagnosed with colon cancer in May and have been going thru chemo so I haven't been on any dercums sites lately.  what  dercums group do you watch?  I have lost weight with the chemo and the dercums tumors are a lot closer to the surface now and more painful. I wonder if there are other dd patiens who have also had
cancer and how they fared with chemo.  Got any advice about getting info on that?

Thanks so much for keeping in touch.  How are you doing?

Blessings

Debra


--- On Mon, 7/28/08, Don B <dercums@...> wrote:

From: Don B <dercums@...>
Subject: [Dercums_Disease] dercumshope.org
To: Dercums_Disease@yahoogroups.com
Date: Monday, July 28, 2008, 8:15 PM

FYI
Looks like dercumshope. org forgot to pay their registration fee --
it's now a shop hobby bridal book pet ... site. Hope they can buy it
back.


#26209 From: "Don B" <dercums@...>
Date: Tue Jul 29, 2008 1:15 am
Subject: dercumshope.org
dercums
Offline Offline
Send Email Send Email
 
FYI
Looks like dercumshope.org forgot to pay their registration fee --
it's now a shop hobby bridal book pet ... site.  Hope they can buy it
back.

#26208 From: Tami <ladydubois@...>
Date: Mon Jul 28, 2008 2:51 am
Subject: Re: skeletal pain
ladydubois
Offline Offline
Send Email Send Email
 
With me, it is skeletal pain from DD. Tami

Tamela Dossey
Avon Independent Sales Representative
eRepresentative
Certified Beauty Advisor
Home phone: 972-262-1247
Or order direct- www.youravon.com/tdossey
I Love What I Do!
        


--- On Fri, 7/25/08, dawnriser44 <dawnriser44@...> wrote:
From: dawnriser44 <dawnriser44@...>
Subject: [Dercums_Disease] skeletal pain
To: Dercums_Disease@yahoogroups.com
Date: Friday, July 25, 2008, 3:01 PM

Do all of you suffer from skeletal pain in addition to the pain of the
lipomas? I have had a persistent and severe gnawing pain in my bones
for about a year - it's like someone constantly drilling in the very
center of my bones all the time. My doctors thought this was due to a
range of causes but now I wonder if it is just part of Dercum's since
it started at the same time as the lumps started showing up.


#26207 From: "Will - I - Am" <waksmf@...>
Date: Sun Jul 27, 2008 10:42 pm
Subject: Careful with that advice
waksmf1984
Offline Offline
Send Email Send Email
 

Howdy folks, please be careful with great bits of advice like this:

 

>>>To heal the wound, apply some tea tree oil if you have some.

 

Of course, check with your medical care pros to be certain this will not have any ill effects, that you are not allergic, that it won’t interact with any ointments or meds you are already using, that you don’t need something stronger or systemic (like cipro), yadda blah etc.  Take care – talk to you soon – Later, Will

Use your spoons wisely.

 

 

 


#26206 From: Karen Krzeminski <kamperk06@...>
Date: Sun Jul 27, 2008 6:25 pm
Subject: RE: RE: Weight reduction
aqua12062
Offline Offline
Send Email Send Email
 
BMI is under 25 but I've lost weight. Eating healthier, less red meat, NONI juice, Grape seed extract. Moved to AZ where there's less humidity. Lost about 8lbs and still losing ...I weigh about 137.


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




Time for vacation? WIN what you need. Enter Now!

#26203 From: "Judith" <poeticusmaximus@...>
Date: Sun Jul 27, 2008 2:47 pm
Subject: Re: Having a difficult time with life!
poeticusmaximus
Offline Offline
Send Email Send Email
 
Ultimatum, schmultimatum! I'd hand him his hat and tell him never to
darken my doorway again!! Any change that he made due to an ultimatum
would be very temporary. In a week he would simply revert to type and
you'd have to gp through all that drama again. The build up, the blow
up, the fold up and the make up. Who needs that??  We have enough
pain in our lives. If you ain't legally tied to the creep, ditch him
like he was a mangy stray. How much else are we expected to accept in
our pain filled lives?

Whatever transformation this disease puts us through on the outside,
we are still fine women on the inside: Compassionate, intelligent,
kind, capable, wise - very wise, because we have had to learn to live
within parameters that change monthly, weekly and sometimes daily,
strong...

He couldn't live with what you are living with. He'd fold up like
yesterday's dirty diaper!

It is one thing being alone. It is quite another being in a
relationship and STILL being alone. Because if a man should behave
compassionately or express interest in getting to know you better (in
spite of you body. I mean, there are deep men out there who can see
past a disease like this)you can't because you have this mean
spirited albatross around your neck, or, another image, a nasty
little monkey on your back - that won't be sweet and won't get off.
Just stays up there and poops, scratches, pulls your hair and bites.

I am sorry if I offend. This is none of my business. I just couldn't
help reacting.

Gentle hugs,

Poe

#26202 From: Suzi More <suzimore92@...>
Date: Sun Jul 27, 2008 1:32 am
Subject: Re: Re: Having a difficult time with life!
suzisblue
Offline Offline
Send Email Send Email
 

Dear Teri,

 

My boyfriend of ten years tells me to tell everyone who asks me that I am "just fine"

he then gets mad a few times a week, drinks too much and gets nasty, he is mad that I have gained over 80 lbs and he

reminds me that he hasn't gained an ounce since we met.

 

He has started calling me names lately. I have been called a pig,

a cow, and lastly, a few days back, an orangatan.

I then will  let him know which name he has used, the next day when he has forgotten.

He now has a few more days to figure out if he will stop drinking again (the last time he stayed sober for over two

years) or he is going back to live with his mother. (This is a fate worse than death of course.)

 

It is a good thing that I have spent years working with special populations as a teacher, I have taught music to every kind of student

from the rich and affluent to the poorest innercity, from pre-k to high school and  from learning disabled to severely handicapped to the

exceptionally gifted and to the emotionally disturbed  on suicide watch.

 

I have done in my work but I don't need the drama in my home

where I'm supposed to find some peace.

 

So the skinny little monster has now been given an ultimatum.

 

Suzi 

 

 



----- Original Message ----
From: Vickie Williams <eachdayicryevenmore@...>
To: Dercums_Disease@yahoogroups.com
Sent: Friday, July 25, 2008 2:29:13 PM
Subject: Re: [Dercums_Disease] Re: Having a difficult time with life!

Hi Teri:

 

I am trying but lately I am so tired of all this and my husband.

My husband hates the world and everything with it!

 

I am afraid that one day I will find him dead. Either by a heart attack or by him taking his life.

He is pissed off at GOD for letting this happen to me.  He takes it out on me for being this way. He becomes so hostile some times I am afraid of him.  I walk away because I do not want to hear his BS.  If and when he does work around the house he uses language I do not approve of.  He should know better because he was a hauteur boy when he was younger. 

 

I have been reading the info on Lipomas and found this web site within http://members. tripod.com/ Dercums_Data/ support.html

 

Have you or anyone purchased these vitamins?

Does they work? I found some info regarding some chemical injections.  Does anyone know if this is available and what was the outcome of the study. It does not explain or that I am to absent minded to understand it.. 

 

DISCOVER AND COMPARE  ALTERNATIVE MEDICINE 

TREATMENT OPTIONS FOR

Lipoma

 

 

When the others mention that they have fat fingers are they referencing about DD's or rheumatoid arthritis? I believe I picked up rheumatoid arthritis in my hands. One or fingers pop out of socket and my fingers and between the joints swollen up. This has been going on for at least 4 months now. Sometimes my finger locks up and I drop things. They hurt and my hand does not close all the way when they are like this.  One day one hand will hurt more then the other and then take turns. I get so upset when both hands give me problems.  So is this what the group is talking about? Or do I have rheumatoid arthritis in my hands too!

 

You take care of yourself! May the LORD Be With You!

 

Hugs Vickie



----- Original Message ----
From: Teri <datguise@msn. com>
To: Dercums_Disease@ yahoogroups. com
Sent: Friday, July 25, 2008 1:41:16 PM
Subject: [Dercums_Disease] Re: Is this cyclical?


Hi again

Well here is the brain fog. I ramble.

I also wanted to say that I have started juicing. Also eat organic as
much as possible (always have eaten good food, whole, organic, etc.) I
know I use etc. a lot. IF I drink dairy, it is raw, try to get raw
cheese. I love cheese. Have cut out red meat, mostly, but have to say
though that I am an O blood type and once in a while I think I gotta
have it so if I do it is organic burger (costco has it). Mostly though
for meat, I eat chicken. Try to get organic range chicken, but I will
buy what has been minimum processing without growth hormones,
antibiotics.

Well I think that's all.

Teri

--- In Dercums_Disease@ yahoogroups. com, "Teri" <datguise@.. .> wrote:
>
>
> Hi Dawn
>
> I think we all agree that the flares (growths of new) are in cycles,
but
> the duration and time of the flares could be very individualistic
> depending on lifestyle, stress, progression of the disease/syndrome,
> activity that may set it off for you etc.
>
> I can tell you for me, it started in 2003, after a bad rollover wreck.
> But what really made the suckers come on strong was after therapy was
> all over and I got back to work, the tremendous activity (lasting two
> months) of my job was like an explosion of tumors and symptoms.
>
> I tried many alternatives at the time. I thought if I cleansed my body
> it would get rid of it. It helped for a while. Actually, naively, I
> thought I found the "cure" as I was feeling SSOO much better. The
lumps
> were still there, and the pain of the lumps, but I had energy back and
> my brain back. I'm glad I did not post it. As soon as another round of
> very heavy activity came and I went down hill again. I tried another
> cleanse, but it did not work the next time.
>
> Then, desperate, I tried a gall-bladder purge with olive-oil and
lemon.
> This is like whole lot of olive oil, not a couple tablespoons. This
did
> not work either.
>
> Because my job required constant walking ( I was a power walker, not
> meanderer), lifting, carrying, pushing, pulling, hand work etc, I went
> far down over four years to where I could no longer work. All of it
> progressed the disease. Not to mention the stresses of the job as well
> and many very stressful traumatic events outside of work as well
> (sickness and death of pets, on going foster/adoption of niece -sister
> hates me, another sister had a heart attack, her husband was hit by a
> truck an killed, purse stolen, next night car stolen etc etc.
>
> I tried the pharmecutical route as desperate as we are to function and
> escape the pain and not being able to sleep etc. For me, I stopped
> taking them two years later. Don't take them now, although at this
> point, the pain is almost too much along with no sleep. But I have
> chosen not to take that (pharmecutical) route again. I went through
> physical, mental and emotional side effects. After stopping the meds
> and going through the withdrawl, I never want to have to do that
again.
> From what I read, when you go through the withdrawl, there is a point
> where you are suppose to crave the med. I never had this craving. I
> wanted them out of my body. But then again, from what I read, I was
> experiencing side effects that 3% of people have. I never knew that
> some of the side effects that I had were from the pain meds because
they
> were not listed on the sheets.
>
> Well anyway, now ( since January) I am seeing Naturopaths that
practice
> an integrative approach meaning they use accupunture, Chinese herbs,
> homeopathic medecines, supplements etc. I have given them Dr. Herbst
> info and recommendations and we are using many, but not
pharmecuticals.
> So far, there has been no stopping of growth or weight gain. There
have
> been some more tolerable days and some minutely energetic days, but
once
> I am used up, that is it and I go back to absolutely no energy,
fatigue,
> feeling of weakness etc. My eyes really bother me. Headaches are
> almost daily. Hands are swollen daily. Blah blah blah blah blah.
> Brain fog, sweating, peeing, yada yada yada.
>
> Well this has been very long, but about the cycles I wanted to say
that
> the DD lumps hurt all the time especially the ones that have pressure
> from clothing, others only when leaned on or bumped, but for about 3
> weeks I have had the spasms. I don't know if others have this or not.
> Many of the ones on my torso and even on my legs are spasming (feels
> like someone is grabbing them and squeezing or jabbing them)
>
> I am also having a fast rate of weight in the stomach area and it also
> causes the eating, breathing, again wearing clothing problems.
>
> Sorry this has been so long. I guess it just brought up many thoughts.
>
> I thought I had tried some pretty adventersome stuff. My stepfather
> used DMSO on his tendonitis. He swore by it.
>
> I have tried drinking food grade hydrogen peroxide ( the way you are
> suppose to do it, BEWARE). I was not consitent. I don't know if the
> support group has still been trying this, but Dr. Karen and others
> talked about using food grade hydrogen peroxide in the bath as that
was
> suppose to absorb into the body and oxygenate. I think you use epson
> salts first and soak in that and then add the diluted hydrogen
peroxide.
>
> I have also use aromatherapy in the bath and epson salts hot baths are
a
> staple.
>
> Well all, it is sunny and nice here today. Thank God! I can't stand
> the cold and get sick and worse. Here in Western Washington it seems
> like you can't have a consistent nice summer anymore, but then, where
is
> the weather normal anymore.
>
> I will stop now.
>
> Hugs and spoons around.
>
> Teri
>
>
>
> --- In Dercums_Disease@ yahoogroups. com, "dawnriser44" dawnriser44@
> wrote:
> >
> > Does Dercum's flare up and down in cycles? For me, it just started
> > about a year ago with some initial lumps and but then in the last 2
> > months I have been getting new ones every day. I wake up and find
more
> > and more lumps and its to the point where I would be unable to count
> > them all - there are literally hundreds of them.
> >
> > What I wonder is if Dercum's is like other autoimmune disease where
it
> > might have a very active time and other times when its inactive or
> > dormant. Also, has anyone ever used prednisone to treat Dercum's -
> > either topically or orally and did it help?
> >
>




#26201 From: Pamela Harrison <ozziespamela@...>
Date: Sun Jul 27, 2008 3:26 am
Subject: Re: Re: new and crazy happenings...
ozziespamela
Offline Offline
Send Email Send Email
 


----- Original Message ----
From: "invadedbyaliens1@..." <invadedbyaliens1@...>

Where do you get tea tree oil at? Sounds wonderful. I remember now reading something good about it.
 
Health food stores carry it. I used it to heal a brown recluse bite years ago. It saved me from surgery. If you have MRSA, it won't help much though.
Pamela



#26200 From: Pamela Harrison <ozziespamela@...>
Date: Sun Jul 27, 2008 2:55 am
Subject: Re: new and crazy happenings...
ozziespamela
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Send Email Send Email
 
Robin,
Please see a doctor immediately about that sore! What you are describing sounds like a boil. I had MRSA (Methicillin Resistant Staphylococcus Arius) several years back, and that is how it started. I tried to tough it out and didn't see a doctor until they were all over me and a couple were huge by then. Because I delayed, I had to be hospitalized for a week. Yours may be an ordinary boil, but please have it cultured to make sure. That bacteria is everywhere these days and we are more susceptible becasue of our compromised immune systems.
Hugs and spoons,
Pamela



#26199 From: "dawnriser44" <dawnriser44@...>
Date: Sun Jul 27, 2008 2:00 am
Subject: Re: new and crazy happenings...
dawnriser44
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Send Email Send Email
 
> Where do you get tea tree oil at? Sounds wonderful. I remember now
reading something good about it.


You can buy it in any health food store and probably most drug stores
will have it in the natural products section.  It is readily available
in places like WalMart and other department stores, too.  Just make
sure you get the pure tea tree oil and that it isn't mixed with
anything else.

#26198 From: invadedbyaliens1@...
Date: Sat Jul 26, 2008 7:15 pm
Subject: Re: Re: new and crazy happenings...
invadedbyaliens
Offline Offline
Send Email Send Email
 
Where do you get tea tree oil at? Sounds wonderful. I remember now reading something good about it.
 
In a message dated 7/26/2008 4:08:48 P.M. Central Daylight Time, dawnriser44@... writes:

If the fluid that is oozing is clear, I wouldn't worry too much but
if whatever is oozing is yellow or looks infected in any way you need
to go to a doctor. Usually simple skin infections are no big deal
but there are staph infections that can be very dangerous if left
untreated. If you have a fever, you should go to the ER and not wait
until Monday.

To heal the wound, apply some tea tree oil if you have some. It is
an amazing oil with antibiotic properties and works very quickly in
healing cuts. It works far better than any of those antibiotic
ointments you can buy over the counter. It's a great addition to
your first aid kit - it's used for everything from cuts and burns,
bleeding gums, cold sores, to getting rid of skunk odor if you have a
pet that gets sprayed. Everyone should have tea tree oil on hand.

Good luck...I hope you don't have any further problems with your
wound.

--- In Dercums_Disease@yahoogroups.com, "Renee' Rohde" <raenjad@...>
wrote:
>
> I have a question. I want to know if any of you have had this
problem or am
> I the only weird one with it. On my lower abdomen (which by the
way hangs
> down over my thighs because there are sooo many lipomas) i had what
I
> thought was like an ingrown hair or something. Well it formed like
a
> pimple, right over one of my larger lumps and eventually busted and
scabbed
> over. Well, the scab was nasty and greenish in color and was
really red
> around it and I thought, oh great, I'm going to get an infection
now. So my
> husband said I should soak it to loosen the scab and once it comes
off to
> wash it really good and put neosporin on it to prevent infection.
So, I did
> that yesterday. But the new skin that is under where the scab was
is white
> in color and it will not stop oozing. Could the white be a lipoma
showin
> through? Do they form that close to the surface or is there
something wrong
> with my skin? it's freaking me out and I really don't want to go
to the dr
> with it. Am i just being a baby? I covered it with a bandage but
everytime
> i take it off it's wet with fluid from the sore. I'm really
scared. Also,
> on some parts of my body, where the lumps are the skin is really
hard and
> dimply and the hair growth is really dark and grows a lot faster in
those
> places. (sides of my knees, arms, abdomen, back thigh)
>
> Am I worrying about nothing or is there an alien trying to push
it's way out
> of my body? Please help me...
>





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#26197 From: "dawnriser44" <dawnriser44@...>
Date: Sat Jul 26, 2008 9:08 pm
Subject: Re: new and crazy happenings...
dawnriser44
Offline Offline
Send Email Send Email
 
If the fluid that is oozing is clear, I wouldn't worry too much but
if whatever is oozing is yellow or looks infected in any way you need
to go to a doctor.  Usually simple skin infections are no big deal
but there are staph infections that can be very dangerous if left
untreated.  If you have a fever, you should go to the ER and not wait
until Monday.

To heal the wound, apply some tea tree oil if you have some.  It is
an amazing oil with antibiotic properties and works very quickly in
healing cuts. It works far better than any of those antibiotic
ointments you can buy over the counter.  It's a great addition to
your first aid kit - it's used for everything from cuts and burns,
bleeding gums, cold sores, to getting rid of skunk odor if you have a
pet that gets sprayed.  Everyone should have tea tree oil on hand.

Good luck...I hope you don't have any further problems with your
wound.



--- In Dercums_Disease@yahoogroups.com, "Renee' Rohde" <raenjad@...>
wrote:
>
> I have a question.  I want to know if any of you have had this
problem or am
> I the only weird one with it.  On my lower abdomen (which by the
way hangs
> down over my thighs because there are sooo many lipomas) i had what
I
> thought was like an ingrown hair or something.  Well it formed like
a
> pimple, right over one of my larger lumps and eventually busted and
scabbed
> over.  Well, the scab was nasty and greenish in color and was
really red
> around it and I thought, oh great, I'm going to get an infection
now.  So my
> husband said I should soak it to loosen the scab and once it comes
off to
> wash it really good and put neosporin on it to prevent infection.
So, I did
> that yesterday.  But the new skin that is under where the scab was
is white
> in color and it will not stop oozing.  Could the white be a lipoma
showin
> through?  Do they form that close to the surface or is there
something wrong
> with my skin?  it's freaking me out and I really don't want to go
to the dr
> with it.  Am i just being a baby?  I covered it with a bandage but
everytime
> i take it off it's wet with fluid from the sore.  I'm really
scared.  Also,
> on some parts of my body, where the lumps are the skin is really
hard and
> dimply and the hair growth is really dark and grows a lot faster in
those
> places. (sides of my knees, arms, abdomen, back thigh)
>
> Am I worrying about nothing or is there an alien trying to push
it's way out
> of my body?  Please help me...
>

#26196 From: "Renee' Rohde" <raenjad@...>
Date: Sat Jul 26, 2008 3:46 am
Subject: new and crazy happenings...
rockin_robin...
Offline Offline
Send Email Send Email
 
I have a question.  I want to know if any of you have had this problem or am I the only weird one with it.  On my lower abdomen (which by the way hangs down over my thighs because there are sooo many lipomas) i had what I thought was like an ingrown hair or something.  Well it formed like a pimple, right over one of my larger lumps and eventually busted and scabbed over.  Well, the scab was nasty and greenish in color and was really red around it and I thought, oh great, I'm going to get an infection now.  So my husband said I should soak it to loosen the scab and once it comes off to wash it really good and put neosporin on it to prevent infection.  So, I did that yesterday.  But the new skin that is under where the scab was is white in color and it will not stop oozing.  Could the white be a lipoma showin through?  Do they form that close to the surface or is there something wrong with my skin?  it's freaking me out and I really don't want to go to the dr with it.  Am i just being a baby?  I covered it with a bandage but everytime i take it off it's wet with fluid from the sore.  I'm really scared.  Also, on some parts of my body, where the lumps are the skin is really hard and dimply and the hair growth is really dark and grows a lot faster in those places. (sides of my knees, arms, abdomen, back thigh)
 
Am I worrying about nothing or is there an alien trying to push it's way out of my body?  Please help me...

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