BUTTERFLIES AMONG US

LUPUS/Fibromyalgia and more: Support for all

Autoimmune: Lupus, Fibromyalgia, CFS, Migraines, MS, and more. This site is NOT ONLY for people with illness, SUPPORTERS, are WELCOME!

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I AM ASKING THAT EVERY MEMBER HERE TO PLEASE KEEP YOUR COMMENTS CLEAN, NO OFFENSIVE LANGUAGE TO OTHER MEMBERS ON COMMENTS OR FORUMS. WE ARE ALL HERE TO SUPPORT EACH OTHER, TO BECOME FRIENDS WITH ONE ANOTHER, AND TO GIVE ADVICE, ETC. I ALSO ASK THAT YOU PLEASE KEEP GRAPHIC COMMENTS CLEAN AS TO NOT OFFEND OTHER MEMBERS. IF I BECOME AWARE OF ANY OFFENSIVE BEHAVIOR ON THIS SITE, YOU WILL BE NOTIFIED ONCE, AND IF IT HAPPENS AGAIN, YOU WILL BE ASKED TO LEAVE THIS SITE. THANK YOU FOR YOUR COOPERATION.

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ANNOUNCEMENT!! & UPDATES!!

HEY EVERYONE! I 1ST, I WANT TO THANK EACH AND EVERYONE OF YOU FOR JOINING AND MAKING THIS SITE SUCH A SUCCESS! I'M VERY PLEASED AND EXCITED WITH THE OUTCOME, THE SUPPORT, POSITIVE ATTITUDES AND FEEDBACK, FRIENDS, AND FAMILY WE HAVE ALL CREATED HERE!

PLEASE TAKE A LOOK AROUND THE MAIN PAGE FOR MOST RECENT FORUM TOPICS ON THE RIGHT (OR REPLIES) AND BLOGS ON THE LEFT! AND FOR ANY NEW INFO I MIGHT NEED TO POST. THANKS!

HOPE EVERYONE IS DOING WELL, AND IF NOT HOPE YOU FEEL BETTER VERY SOON. THOUGHTS AND PRAYERS ARE WITH YOU ALL, EVERY DAY!
THANKS, LOTS OF HUGS TO ALL ~ BUTTERFLY KIMBERLY

Blog Posts

William Davis

Store Spotlight: "The Right Moves for Lupus Fitness" DVD

If lupus has you on the sidelines rather than in the middle of the action, this new low-impact exercise program, designed specifically for people with lupus, may be "just right" for you.

Guided by a licensed A.C.E. instructor who also has lupus, this DVD offers a gentle fitness routine that you can practice in the comfort of your own home. The goal is not to become a super model but to get moving -- and to improve your well-being in the process.… Continue

Posted by William Davis on November 20, 2009 at 8:15am

William Davis

Store Spotlight: "The Right Moves for Lupus Fitness" DVD

If lupus has you on the sidelines rather than in the middle of the action, this new low-impact exercise program, designed specifically for people with lupus, may be "just right" for you.

Guided by a licensed A.C.E. instructor who also has lupus, this DVD offers a gentle fitness routine that you can practice in the comfort of your own home. The goal is not to become a super model but to get moving -- and to improve your well-being in the process.… Continue

Posted by William Davis on November 20, 2009 at 8:15am

William Davis

LFA Releases Video Series on the Latest Lupus Research

The Lupus Foundation of America (LFA) joined more than 11,000 rheumatologists and allied health professionals at the American College of Rheumatology's (ACR) 2009 Annual Scientific Meeting in Philadelphia, Pennsylvania in mid-October. The program included more than 260 abstracts, plenary or special session presentations specifically about lupus.

Representatives of the LFA attended the meeting to report on new developments in basic, clinical, translational, and epidemiological research on lupus.… Continue

Posted by William Davis on November 19, 2009 at 9:30am

William Davis

LFA Releases Video Series on the Latest Lupus Research

The Lupus Foundation of America (LFA) joined more than 11,000 rheumatologists and allied health professionals at the American College of Rheumatology's (ACR) 2009 Annual Scientific Meeting in Philadelphia, Pennsylvania in mid-October. The program included more than 260 abstracts, plenary or special session presentations specifically about lupus.

Representatives of the LFA attended the meeting to report on new developments in basic, clinical, translational, and epidemiological research on lupus.… Continue

Posted by William Davis on November 19, 2009 at 9:30am

William Davis

LFA's "Medication Adherence" Webchat to be Held Monday, November 23 at 3 p.m. Eastern

Reminder -- the Lupus Foundation of America's webchat is next Monday afternoon, November 23, at 3 p.m. Eastern Time.

The LFA welcomes Dr. Sam Lim, who will serve as the guest expert for the "Medication Adherence" webchat.

This is your opportunity to ask questions and learn from an expert. Dr. Lim is Assistant Professor of Medicine at Emory University Sch… Continue

Posted by William Davis on November 16, 2009 at 8:12am

William Davis

LFA's "Medication Adherence" Webchat to be Held Monday, November 23 at 3 p.m. Eastern

Reminder -- the Lupus Foundation of America's webchat is next Monday afternoon, November 23, at 3 p.m. Eastern Time.

The LFA welcomes Dr. Sam Lim, who will serve as the guest expert for the "Medication Adherence" webchat.

This is your opportunity to ask questions and learn from an expert. Dr. Lim is Assistant Professor of Medicine at Emory University Sch… Continue

Posted by William Davis on November 16, 2009 at 8:00am

Tina Romine

IT really makes you wonder, doesn't it?

I went to see my foot doctor again on Friday, November 13th. ( just the date alone had me paranoid.lol). I was shown some x-rays of my feet that were taken about a couple of weeks ago. The x-ray showed that I have a broken foot and alot of bone spurs as well. Now I sit with my feet taped for support, waiting till next month when I go back to the doctor to have my feet casted, really not sure why but I will see... I knew my foot was hurting just a little but when you have pain all over more sever… Continue

Posted by Tina Romine on November 15, 2009 at 4:45am

William Davis

Save the Date: LFA's Lupus Advocacy Day on Capitol Hill to be Held March 15-16, 2010

The LFA Annual Advocacy Day provides lupus advocates from across the nation the opportunity to participate in meetings with their U.S. Senators and Representatives to educate policy makers on lupus and discuss public policies that affect people with lupus.

L’Enfant Plaza Hotel, in downtown Washington DC, will be our headquarters hotel. More details will be coming soon.

Posted by William Davis on November 13, 2009 at 7:47am

Stacey Mommy to many

Busy, busy, busy

Still fighting this flare. The pleurisy is back, having night sweats, head to toe itching, and immense pain along with the normal for me of fog, fatigue, joint pain. Had to start a higher dose of Imuran in Aug. Each appointment my rheumy tells me we are closer to having to start on Cytoxan. My kidneys have been still going through infections and right now are at 90% but have been recovering to 97% in between infections so I guess good news there. My rheumy had me pull Jakob out of school in the… Continue

Posted by Stacey Mommy to many on November 12, 2009 at 2:07pm

Stacey Mommy to many

Busy, busy, busy

Still fighting this flare. The pleurisy is back, having night sweats, head to toe itching, and immense pain along with the normal for me of fog, fatigue, joint pain. Had to start a higher dose of Imuran in Aug. Each appointment my rheumy tells me we are closer to having to start on Cytoxan. My kidneys have been still going through infections and right now are at 90% but have been recovering to 97% in between infections so I guess good news there. My rheumy had me pull Jakob out of school in the… Continue

Posted by Stacey Mommy to many on November 12, 2009 at 2:07pm

Donna J Farr

Serious Pain

Yesterday about Midnigt, I had the worse Migraine ever. It just came out of the blue you know, I started seeing white flashing like lights and I knew what that meant. At first I had dull throbing ache in my head and before you know it my hole left side was just killing me. My Migrains are really bad, I get every sign this is going to be bad. I started to get so sick to throw up, but nothing helped and ever time I felt like throwing up my head hurt more. I told my husband take me to ER this heada… Continue

Posted by Donna J Farr on November 11, 2009 at 6:51pm — 1 Comment

William Davis

Participate in the BENLYSTA Research Update Call on Monday, November 30, 2009

The Lupus Foundation of America (LFA) invites those living with lupus and interested in learning more about the results of the BENLYSTA studies to join us for a special Webinar on Monday, November 30, 2009 at 7 p.m. EST.

LFA’s Medical Director, Dr. Joan Merrill, will review the results of the BENLYSTA studies and answer questions. Questions can be submitted in advance.… Continue

Posted by William Davis on November 11, 2009 at 7:55am

William Davis

Participate in the BENLYSTA Research Update Call on Monday, November 30, 2009

The Lupus Foundation of America (LFA) invites those living with lupus and interested in learning more about the results of the BENLYSTA studies to join us for a special Webinar on Monday, November 30, 2009 at 7 p.m. EST.

LFA’s Medical Director, Dr. Joan Merrill, will review the results of the BENLYSTA studies and answer questions. Questions can be submitted in advance.… Continue

Posted by William Davis on November 11, 2009 at 7:55am

William Davis

H1N1 (Swine) Flu Advisory for People with Lupus

The LFA is consulting with the Centers for Disease Control and Prevention (CDC), as well as our National Medical-Scientific Advisory Council, on the possible impact of this virus on people with lupus. The Lupus Foundation of America (LFA) is aware of the concern that people with lupus may have about the recent outbreak of the H1N1 (Swine) Flu.

Get the latest update on H… Continue

Posted by William Davis on November 9, 2009 at 8:22am — 1 Comment

William Davis

MicroRNA’s Role in Interferon’s Contribution to Inflammation

Interferons (IFNs) are proteins produced by immune cells when the immune system is activated. They send different instructions to cells depending on the needs of the immune response; this can lead to cells making certain inflammatory proteins. IFNs communicate with the cells by linking up with receptor proteins along the cell surface, the way a key fits into a lock. This action sends a signal into the cell that eventually either turns on or turns off the process we recognize as inflammation.

Th… Continue

Posted by William Davis on November 6, 2009 at 8:19am

William Davis

LFA's "Social Wellness ... and Helping Others Understand Lupus" Webchat to be Held Wednesday, November 11 at 3 p.m. Eastern

Reminder -- the Lupus Foundation of America's webchat is next Wednesday afternoon, November 11, at 3 p.m. Eastern Time.

The LFA welcomes Ms. Cindy Coney, who will serve as the guest expert for the "Social Wellness, Making Connections and Helping Others Understand What You Go through with Lupus" webchat.

This is your opportunity to ask questions and learn… Continue

Posted by William Davis on November 4, 2009 at 9:14am

William Davis

Promise of a New Lupus Treatment is a Groundbreaking Achievement

BENLYSTA™ Successful in Second Pivotal Clinical Trial

Human Genome Sciences (HGS) and GlaxoSmithKline (GSK) today announced positive results from BLISS-76, the second of two large-scale phase III clinical trials of BENLYSTA™ (belimumab) for treating systemic lupus. A full presentation of results from BLISS-52 was recently shared at the 73rd Annual Scientific meeting of the American College of Rheumatology. Both trials succeeded in meeting their primary endpoints, which should make BENLYS… Continue

Posted by William Davis on November 2, 2009 at 8:18am

William Davis

Nominate the Lupus Foundation of America for “Best Non-Profit Use of Social Media” in Mashable's 2009 Open Web Awards

Mashable, in partnership with MOTOBLUR, is conducting the 3rd Annual Open Web Awards: Social Media Edition. The 2009 Open Web Awards is Mashable’s international online voting competition that covers major innovations in web technology and social media.

The Lupus Foundation of America (LFA) is participating, and would like to take the category of “Best Non-Profit Use of Social Media.” We need you and your friends and family to help us win!

How You Can Help

Once a day, every day between… Continue

Posted by William Davis on October 28, 2009 at 12:47pm

William Davis

Factors That Influence Pregnancy Outcomes in Women with Lupus

Although women with lupus used to be advised to avoid getting pregnant, out of fear of complications for the mother, the baby, or both, a better understanding of the complications of lupus and improved management of lupus pregnancies have resulted in improved outcomes.

Today at least 85 percent of lupus pregnancies result in live births.

However, doctors still advise women who have active lupus kidney disease (lupus nephritis, or LN) not to get pregnant until their disease has been inactive fo… Continue

Posted by William Davis on October 26, 2009 at 7:56am

GoldenLadyNiecy

THANK GOD 4 WEEKENDS!!!





… Continue

Posted by GoldenLadyNiecy on October 25, 2009 at 1:30am

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This is a group for Fibro Sufferers that just want to be positive and give loving thoughts to each other. Also just talk of bad days and how we all get through them.
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This is a group where you come to complain, look up, and share ideas that help you with pain management, whether they be general pain or specific pain.
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FLYERS AVAILABLE ABOUT LUPUS, THANKS TO ALI JORDAN! GREAT JOB! THIS IS A TRI-FOLD FLYER, AVAILABLE THROUGH THE FORUM!

Please watch the video below and help Howie Dorough from Backstreet Boys spread the word about the Howie Pendant! He lost his sister due to Lupus complications some years back. Listen about the meaning of the symbol, it's awesome! Post this on your pages, repost this bulletin.. anything you can think of!

BUTTERFLIES AMONG US
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NEW NEWS!! MAY IS NOW LUPUS AWARENESS MONTH! SEE FORUM TOPIC ON THE NEWSLETTER!
For additional information about this global effort to combat lupus, visit the World Lupus Day website at www. worldlupusday. org.

FIBROMYALGIA AWARENESS DAY IS MAY 12TH!!

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PLEASE TAKE A MOMENT TO VISIT THE TAB CALLED EVENTS, YOU CAN NOW GO AND ENTER YOUR OWN EVENTS SUCH AS BIRTHDAYS, ANNIVERSARIES, ETC.!

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PLEASE VISIT MAIA'S PAGE, SHE HAS AN RSS FEED ON LOTS AND LOTS OF LUPUS & RELATED TOPICS ON THE LEFT SIDE OF HER PAGE. VERY INTERESTING STUFF FOR EVERYONE! EVERYTIME THERE IS SOMETHING NEW, IT'S POSTED, PLEASE VISIT!

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IF YOU HAVE A MOMENT PLEASE VISIT A WONDERFUL ORGANIZATION CALLED GIVING BACK! Go to www.myspace.com/feetofclay


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WELCOME TO ALL! NEW ANNOUNCEMENTS/MSGS ON THE LEFT AND RIGHT UPDATED PERIODICALLY ALONG WITH FORUM TOPICS AND BLOGS. PERSONAL BLOGS ARE ON THE LEFT. FORUM TOPICS ARE ON THE RIGHT. FORUM TOPICS AND BLOGS WILL BE POSTED BY LATEST REPLY OR ENTRY. IF YOU KNOW OF A FUNDRAISER, WALK, ETC., COMING UP, PLEASE CLICK ON THE "EVENTS" TAB AT THE TOP AND ENTER YOUR INFO!
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The easiest way to get to me....click on my picture on this right side of the column that states I started the Social Network or anywhere you see my picture!

RECIEVING TOO MANY EMAILS AT THE EMAIL ADDRESS YOU SIGNED UP WITH? I would like to mention that you can chose what emails you recieve. Go to "My Settings" on the right side of the page. From there, you can control what emails you want to receive. Please be sure to CHECK the box to RECIEVE BROADCAST MESSAGES TO THIS NETWORK, as sometimes I may have to send out a mass mailing to the group. I really appreciate it :)

If you are experiencing any problems with the site, please send me a message directly or report a problem and I will get back to you as soon as I can. Thank you all! HUGS ~Butterfly Kimberly

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Sandy Medine

SOMETHING WONDERFUL IS ABOUT TO HAPPEN

August 28 , 2008 SOMETHING WONDERFUL IS ABOUT TO HAPPEN The What's Up On Planet Earth? energy alerts are offered several times per month by viewing them here. Your financial support makes it poss...

Tagged: TO, HAPPEN, ABOUT, IS, WONDERFUL

Started by Sandy Medine in MISCELLANEOUS Nov 17.

Vee Marie

Fibromyalgia & Disability Benefits? 8 Replies

Has anyone in here with Fibromyalgia had success being approved for SSA Disability Benefits? If yes: any helpful pointers? I just got off the phone with an advocate who told me that Fibromyalgia i...

Tagged: input, info, advice, ssa, disability

Started by Vee Marie in OTHER QUESTIONS. Last reply by Mary Castle Nov 14.

Michelle

My Hysterectomy and HRT

I have Lupus, MCT, Sjogrens syndrome and low b/p, my list does grow. I recently had a total abdominal hysterctomy. I was loaded with endometriosis, I no longer has my ovaries, cervix and everything...

Started by Michelle in MEDICAL QUESTIONS Nov 14.

Joey

Need Buddies in OHIO 1 Reply

I live near Cleveland in Ohio.... anyone out there in the same area?? I have no friends with autoimmune diseases that live near me! :( Thanks, Joey

Tagged: ohio

Started by Joey in DO YOU LIVE NEAR ME?. Last reply by Michelle Nov 14.

joy

anyone with fibro living inyorkshire England

Hi my name is Joy I am 46yrs old I live in Barnsley sth Yorkshire, I was diagnosed with Fibro and CFS 2 years ago and searched many sites and places for other people with the same condition, I have...

Started by joy in DO YOU LIVE NEAR ME? Nov 13.

Roxanne

New Here 1 Reply

Hi, my name is Roxanne I'm 21 years old. I was diagnosed with Lupus when I was 20. I also have another Autoimmune Disease Antiphospholipid Antibody Syndrome. I have Endometrosis, MTHFR Disease (blo...

Started by Roxanne in INTRODUCTIONS/PERSONAL STORIES. Last reply by Stacey Mommy to many Nov 12.

julie

Lymphoma, or just the lupus??? 21 Replies

Hi everyone! I recently saw my doctor who told me my lupus was flaring. But because my doc also noticed a swollen lymph node on my neck and I had some symptoms such as night sweats and itching, I w...

Tagged: lymphoma, Lupus

Started by julie in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by Stacey Mommy to many Nov 12.

colsbutterflies

ANYBODY LIVING IN FLORIDA?? 3 Replies

I AM SERIOUSLY THINKING OF MOVING TO FLORIDA FROM PHILLY. THIS WILL HELP MY FINANCIAL AND EMOTIONAL STRESS GREATLY. SO I WAS WONDERING, IF WE HAVE ANY FLORIDA LUPIES, AND HOW THE CLIMATE THERE IS O...

Started by colsbutterflies in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by John A "Dad Butterfly" Nov 9.

Donna J Farr

Surgery/Nov 10th 2 Replies

I am so afraid so afraid of this surgery, It is surgery on my back. I have degenerated disc disease in L4 and L5 is just about nothing there. The surgery will take 8 to 10 hours and I just pray eve...

Started by Donna J Farr in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by Donna J Farr Nov 9.

Sandy Medine

The 12 Principles of Attitudinal Healing ~ by Dr. Gerald Jampolsky based on A Course In Miracles

The 12 Principles of Attitudinal Healing ~ by Dr. Gerald Jampolsky based on A Course In Miracles ~ a way to see differently ~ not a quick fix but a process to apply to any situation that ultimately...

Tagged: on, based, Jampolsky, A, Course

Started by Sandy Medine in MISCELLANEOUS Oct 31.

Sandy Medine

The Cancer Cure Video that circled the globe in 31 minutes

Go watch the video by going to the following webpage: http://tracking.ilinkmd.com/Partner/14774

Tagged: globe, in, 31, minutes, the

Started by Sandy Medine in NATURAL REMEDIES, HOLISTIC, HERBAL, ETC Oct 22.

Sandy Medine

The Cancer Cure Video that circled the globe in 31 minutes

The Cancer Cure Video that circled the globe in 31 minutes by Danica Collins t's not everyday that I find a good reason to send an e-mail to my entire address list. Today, I sense a moral oblig...

Tagged: globe, in, 31, minutes, the

Started by Sandy Medine in NATURAL REMEDIES, HOLISTIC, HERBAL, ETC Oct 22.

Niki

Scared about Cytoxan 2 Replies

I had a kidney biopsy last Friday. My Dr called today saying he was going to take me off the Imuran and start Cytoxan treatment for 2 months. I've been reading up on this med and it has me scared. ...

Started by Niki in MEDICATIONS. Last reply by Niki Oct 21.

Amy Domestico

Finding a Cure

Your Lid Matters, with Yoplait and Dr. Funk The Wii Mommies would like to extend their welcome to Dr.Kristi Funk, a board-certified surgical breast specialist and an expert in minimally-invasive di...

Started by Amy Domestico in I'M IN NEED OF SUPPORT PLEASE!! Oct 20.

Sandy Medine

Quantum Physicist reveals how to master “The Secret”!!download free e-book

http://www.believeandmanifest.com/1/bam/index.php? “First Time I Used This Method, It Changed My Life Forever" Quantum Physicist reveals how to master “The Secret”!! From: Dr. Eric Amidi, Quant...

Tagged: http://www.believeandmanife...

Started by Sandy Medine in AWARENESS WORK Oct 19.

Sandy Medine

New Body Templates Coming Soon!

-------------------------------------------------- Beacons of Light ~ Re-minders from Home are now translated into 24 languages each month. Click on a flag below or see the Translation Page> -...

Tagged: Soon!, LIGHTWORKERS.COM, Coming, Templates, Body

Started by Sandy Medine in MISCELLANEOUS Oct 18.

Dotti Obert

In Severe Pain 4 Replies

I got up this morning, and the pain was so severe. I haven't felt pain so bad in a long time. I took my meds, and they didn't seem to make a difference at all. This makes me so tired to have to try...

Started by Dotti Obert in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by Danielle McNeil Oct 18.

Kiara

Has anybody been diagnosed with lupus with a negative ANA? 32 Replies

I've only met 2 persons, and obviously myself!!! Hope to read from you guys!!!!

Started by Kiara in BLOOD WORK. Last reply by Danielle McNeil Oct 14.

Dotti Obert

Lots of Pain

On the 25th of September I flew down to Florida with my youngest son to pick my up my brother, and bring him home to live with my husband and myself. He was on the job and on a ladder that was 30' ...

Started by Dotti Obert in I'M IN NEED OF SUPPORT PLEASE!! Oct 11.

John A "Dad Butterfly"

Butterfly Kimberly Returning Soon 2 Replies

Hi everyone, Kimberly has been very busy over the past few months and had no access to her computer. She has moved from Boston back to Florida and her family. She just moved into a home and is try...

Started by John A "Dad Butterfly" in Butterfly Kimberly's ANNOUNCEMENTS. Last reply by Dotti Obert Oct 10.

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