BUTTERFLIES AMONG US - LUPUS/Fibromyalgia and more: Support for all

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!

CONTENT/CONDUCT ON THIS SITE

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

Hydrocephalus

Would like to know if anyone here has had Water on the Brain, if so I would like to know what symtoms you have experienced, if so what has been done to help this. I hope this Social Network also supports Hydrocephalus. It's one more added to my illnesses i.e. CFIDS,Fibromyalgia,Lyme Disease, Thank You!~Taeya

Posted by Taeya on February 9, 2010 at 8:00pm — 2 Comments

When a Family Member is Diagnosed with Lupus

Family life inevitably changes when a family member is diagnosed with lupus. Chores need to be redistributed, responsibilities shared, and everyone in the family must try to remain flexible. There will be emotional considerations as well.

Open communication within the family about lupus may help to allay fears and help to foster an understanding and supportive environment for all family affected by the disease.

… Continue

Posted by William Davis on February 9, 2010 at 7:48am

Watch Videos of the Latest Lupus-Related Heart Disease Research

People with lupus are at higher risk for developing heart disease than the general population. Several studies have shown that women with lupus have a 5-to-10-fold increased risk of cardiovascular disease (CVD) as compared to women who don't have lupus. In addition, African American women are three times more likely to develop lupus than Caucasian women which increases their risk of developing lupus-related CVD.

The Lupus Foundation of America (LFA) has committed significant funds to a… Continue

Posted by William Davis on February 5, 2010 at 8:33am

Updated Guidelines for Cardiovascular Health for Women

You know that heart health is important, but when you’re juggling work and home life, keeping heart healthy through diet and exercise can be tough. For people with lupus, especially women, those little slips can spell big trouble.

Lupus and its treatment often create problems, says Amy Kao, M.D., M.P.H., assistant professor of medicine at the University of Pittsburgh’s Lupus Center of Excellence. "People with lupus may be more likely to be physically inactive or develop excessive weight gain fr… Continue

Posted by William Davis on February 3, 2010 at 8:49am

Lupus Foundation of America Releases New Lupus Awareness Videos; Watch the Lupus-Related Kidney Disease Video

Good morning.

The Lupus Foundation of America (LFA) has created 4 new lupus awareness videos, where people who are living with lupus share their personal stories.

In this first video, two people talk about their lupus-related kidney disease.

Baakari Wilder is a man living with lupus. He developed the disease while he was starring in a Broadway musical. Carla Vargas describes how she must undergo periodic chemotherapy tre… Continue

Posted by William Davis on February 1, 2010 at 9:31am

Read the Latest in Lupus Research: Potential New Indicators of Lupus Being Studied in Children

Since the 1970s, researchers have known that lupus patients are at risk for hardening of the arteries (“atherosclerosis”). Some of this risk may be from the increased inflammation that lupus patients have in the bloodstream over many years, but some of it is from the same reasons that hold true for everybody: especially high blood pressure, high blood glucose (sugar), or low levels of "good cholesterol."

Taken together, these risk factors are known as "metabolic syndrome," a condition that puts… Continue

Posted by William Davis on January 29, 2010 at 7:36am

Read the Latest in Lupus Research: People Who Have Both Lupus and Antiphospholipid Syndrome Might Have Higher Risk of Thyroid Disease

The thyroid is a gland in the neck which helps the body keep order over how food and nutrients are handled and how fast people grow, gain or lose weight, how the heart beats, or how blood pressure and cholesterol levels in the blood respond to these changes.

A protein called "thyroid peroxidase" helps to modify other proteins that the thyroid produces that perform all of these functions. Some people make antibodies (immune proteins) against their own thyroid peroxidase (these are called "anti-T… Continue

Posted by William Davis on January 27, 2010 at 8:15am

Read the Latest in Lupus Research: Immunosuppressants Render Flu Vaccination Less Effective in People With Lupus

The immune system fights off the flu in different ways. One way is by making antibodies (immune proteins) that recognize the flu virus and attack it. Another way is by activating certain white blood cells to fight the virus; this is called "cell-mediated immunity." Since cell-mediated responses to the influenza vaccine also influence how well the vaccine will work, it is important to understand how lupus may affect the body’s cell-mediated response to the vaccine.… Continue

Posted by William Davis on January 22, 2010 at 7:53am

LFA Collaborates with Federal Agencies and the U.S. Surgeon General's Office to Expand Medical Education on Lupus

Representatives from the Lupus Foundation of America (LFA), along with 22 national organizations, attended the first consortium meeting aimed at developing a national health care provider education initiative to improve lupus diagnosis, treatment, and management among minorities. The meeting, held at the American College of Rheumatology offices in Atlanta, Georgia from January 12–14, 2010, was facilitated by the U.S. Department of Health and Human Services’ Office on Women’s Health (OWH), and Of… Continue

Posted by William Davis on January 19, 2010 at 9:30am

Tips for Starting -- and Sticking to -- an Exercise Routine

Almost everywhere you look, there are signs telling you to exercise -- from infomercials featuring swimsuit models to newspaper articles about the risks of being a couch potato.

Sorting through the myriad of exercise options can be daunting for anyone. But it can be especially daunting for people with systemic lupus -- many of whom experience joint pain, fatigue, fevers and other symptoms.

For all the hype, there is solid evidence that our bodies need exercise to thrive.… Continue

Posted by William Davis on January 15, 2010 at 8:49am

Read the Latest in Lupus Research: Belimumab Effectively Treats Lupus Flares Over a Four-Year Period

Belimumab (also known as Benlysta™) is currently being studied in Phase III clinical trials to determine whether or not it is effective for lupus. Belimumab specifically reduces the actions of a protein called “B lymphocyte stimulator,” or BLyS. BLyS is a protein that increases the lifespan and inflammatory potential of certain immune cells called B cells, which are known to be hyperactive in lupus patients. Belimumab, which interferes with BLyS, is a human antibody. This means that it looks a l… Continue

Posted by William Davis on January 13, 2010 at 8:54am

Registration for LFA's 2010 Advocacy Day on Capitol Hill Now Open

Want to help generate more funds for lupus research and awareness?

The Lupus Foundation of America's Advocacy Day is an annual event where lupus advocates come together on Capitol Hill to educate Members of Congress about lupus, and encourage them to support more funding for lupus research.

Join lupus advocates in Washington, DC, Monday and Tuesday, March 15-16, 2010, as we introduce the Lupus Foundation of America's advocacy priorities for FY2011.… Continue

Posted by William Davis on January 11, 2010 at 8:13am

treatment options

My mother-in-law has Fibromyalgia and has not found a successful treatment option. What sort of treatment options are you all finding effective. What levels are your Medical Insurance providers covering your treatments? I have seen some International Medical Insurance that cover at 90% or more. = I think it would be great for everyone t… Continue

Posted by Cindy Fallsen on January 8, 2010 at 3:03pm

asthma and my mom

sorry i dont get on much anymore but alot has happned right before xmas i got a severe asthma attack and stayed in the hospital for a week and i have to have oxygen so wearing this oxygen hose is an adjustment but i can do it. then a few days ago we found out that my mom has breast cancer she has scatterd ones plus one that is a size of a pea.

Posted by dianeloveshermom on January 8, 2010 at 1:32pm

Guest Blogger Wendy Rodgers Talks about Her Rose Parade Experience

I opened 2010 with an amazing experience as a Donate Life Float Rider. There were several days of events that led up to our ride through Pasadena, and each one touched my heart. We arrived to celebrate at an opening orientation and dinner which also allowed each of us to share our story. I immediately realized that I was among people who truly knew the value of life and how we must often overcome some insurmountable obstacles to keep going. A highlight of this event was meeting Gary Foxen, a lun… Continue

Posted by William Davis on January 8, 2010 at 10:42am

Lupus Foundation of America Awards New Research Funding to Address Issues Critical to Lupus Patients

Research areas include management of the disease in children and teens, improving health outcomes, underlying genetic causes of male lupus, facilitating greater accuracy in the diagnosis of lupus

The Lupus Foundation of America, Inc. (LFA) announced new funding for research grants to address issues of critical importance for people with lupus, including the management of the disease in children and teens, improving health outcomes, the underlying genetic causes of male lupus, facilitatin… Continue

Posted by William Davis on January 6, 2010 at 9:08am

Read the Latest in Lupus Research: Belimumab Reduces Lupus Flares in a Phase III Clinical Trial

Belimumab (also known as Benlysta™) is being studied in Phase III clinical trials to see whether it might be effective for lupus. Belimumab specifically inhibits a protein called B lymphocyte stimulator, or BLyS, which increases the survival and activity of immune cells called B cells, which are known to be hyperactive in lupus. Belimumab is a human antibody, which looks very similar to the antibodies made by the immune system to protect people from infections. Most antibodies made during infect… Continue

Posted by William Davis on January 4, 2010 at 7:50am

Friend Tina

Hello, how are you doing? Haven't heard much from you hope all is okay. Happy New Year! Write me back or call I have been worried about you, I know when your sick all you want to do is sleep, That is what I do when I feel really bad or have flare up I just stay in bed. Will take care of yourself and hope all is okay.Your in my prayes always. BF Donna

Posted by Donna J Farr on January 1, 2010 at 2:06am

group Posion in every rose has a thron

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Posted by Donna J Farr on December 31, 2009 at 10:23pm

2009: A Year of Many Firsts in Efforts to Overcome Lupus

Achievements in Research, Education and Advocacy Cause for Celebration and Hope

The year 2009 will be remembered as a year of many firsts for lupus, including the first successful phase III clinical trial of a potential new treatment for lupus, the launch of the first-ever Ad Council public awareness campaign for lupus, and the first comprehensive report on the barriers to lupus drug development. And it appears there are no signs of any slowing of momentum as we enter the New Year.

Adva… Continue

Posted by William Davis on December 31, 2009 at 8:03am

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A LOVE OF ALL THINGS ANIMAL

Here is a place to describe your love for animals. Why you love them, how they make you laugh, how they make you feel. Their unconditional love for us, and sometimes even the tears we shed for them.

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For The Love of Fibro

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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Pain Management

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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PLEASE READ ABOUT CONTENT ON THIS SITE ON THE LEFT. THANK YOU!

PLEASE CHECK THE FORUM TOPIC BUTTERFLY KIMBERLY ANNOUNCEMENTS FOR THE LATEST...THANKS!
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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!

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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!!

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

RSS FEED! UP TO DATE INFO!!

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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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 :)

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restless leg syndrome 4 Replies

Help I have what doctor discribe as restless leg syndrome that affects my whole body, I cannot sit still for more than a couple of minutes then I have to get up and walk around. Has anyone got a quic…

Started by cathie ubrien in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by progressiveforchrist 12 hours ago.

swine flu vaccine 2 Replies

HI has anyone had the swine flu vaccine and if so did it make you sick.?

Started by cathie ubrien in MEDICAL QUESTIONS. Last reply by Lisa Polzien 12 hours ago.

Thanks to the "Spoon Theory"

I read the "Spoon Theory" to my Husband. With a tear in his eyes he finely understood what lupus does to me day in and day out. Thanks to the "Spoon Theory"

Tagged: Lupus

Started by Donna J Farr in INTRODUCTIONS/PERSONAL STORIES Feb 7.

Lupus Well-being

Hello everyone!! I am a high school student conducting an experiment to see if lupus patients who participate in online support groups or in person support groups report higher levels of well being.…

Started by Ati Namvar in AWARENESS WORK Feb 3.

Lupus Well-being

Started by Ati Namvar in MEDICAL QUESTIONS Feb 3.

Lupus Well-being

Started by Ati Namvar in I'M IN NEED OF SUPPORT PLEASE!! Feb 3.

Lupus Well-being

Started by Ati Namvar in OTHER QUESTIONS Feb 3.

Lupus Well-being

Started by Ati Namvar in MISCELLANEOUS Feb 3.

What medication are you taking for Fibromyalgia? How are your side effects? 2 Replies

Hi Everyone! I am recently diagnosed (Aug 09) with Fibromyalgia. It has been a very up and down roller coaster ride trying to get my medication under control. One of my main FM symptoms is muscle…

Tagged: Helpful tips, Symptom Relief, side effects

Started by Carlina (Bennett) Lowe in MEDICATIONS. Last reply by Carlina (Bennett) Lowe Jan 31.

Women to Women Treating fibromyalgia naturally — so you can shine again

New here, but I would love to discuss this article with anyone up for it! Lots of alternative health info from the Women to Women clinic and Marcelle Pick, NP... Here's an excerpt...Recently the FDA…

Tagged: fibromyalgia, to, Women

Started by Jacqueline in NATURAL REMEDIES, HOLISTIC, HERBAL, ETC Jan 31.

Lymphoma, or just the lupus??? 24 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 was…

Tagged: lymphoma, Lupus

Started by julie in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by colsbutterflies Jan 29.

negative ana 5 Replies

I was diagnosed 5 years ago with SLE. My blood work always came out positive ANA. I have majority of the symptoms, rash, joint pain, arthiritis, swelling, fatigue, fever, hair loss, headaches, plueri…

Started by tori in BLOOD WORK. Last reply by tori Jan 27.

Plaquenil/Memory 6 Replies

I have a few questions for my fellow Lupie's. I was diagnosed with Lupus at the age of 16 but it didn't become active with SLE until August (I'm 25 now). I have been on Plaquenil or about 6 weeks now…

Started by Allison Abrusci in MEDICAL QUESTIONS. Last reply by Allison Abrusci Jan 26.

I need some advice. 3 Replies

I am new to this site and this is my first time posting. My name is Chelae and I was diagnosed with SLE and Lupus Nephritis in October 2008. I spent 9 weeks in the hospital with complications from th…

Started by Chelae in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by Harley LeVine Jan 25.

pain in winter 10 Replies

i have fybromyalgia and i get so much pain in the winter from the climate change and the cold weather. Its so bad that I stared crying after my chour concert today because it hurt so much to start up…

Started by Darlene in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by Shelly Binkley Jan 24.

In Severe Pain 8 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 a…

Started by Dotti Obert in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by Tami Jo Bryant Jones Jan 24.

First Butterfly Rash? 8 Replies

Hey all, I think I may have experienced my first butterfly rash, but I was curious to hear what everyone else experiences when they get it. I had a recent flare that I'm just getting over, and one da…

Started by Kate in MEDICAL QUESTIONS. Last reply by Shelly Binkley Jan 23.

Voice America's Doreen Agostino Radio Show

Hi All, I'm happy to announce that I will be joining Voice America's Doreen Agostino this Wednesday Afternoon for an exciting discussion of the (supposed) "end times".........dealing clearly wi…

Tagged: Radio, Show, Agostino, Doreen, America's

Started by Sandy Medine in AWARENESS WORK Jan 23.

ANYBODY LIVING IN FLORIDA?? 8 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 ON…

Started by colsbutterflies in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by colsbutterflies Jan 6.