BUTTERFLIES AMONG US

LUPUS/Fibromyalgia and more: Support for all

Ellen S
  • Female
  • Unionville, Missouri
  • United States
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Replied May 25

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At 12:20pm on June 4, 2009, Sunshine said…
Hello Ellen, I will love to have you on my new social network. Please come and support me on FRIENDS AMONG US

Visit "FRIENDS AMONG US"
At 9:35am on May 25, 2009, Sunshine said…
Welcome Ellen, HAPPY MEMORIAL DAY
At 11:31pm on May 23, 2009, Kimber said…
Memorial Day Pictures, Images and Photos
At 11:51pm on May 22, 2009, Butterfly Kimberly said…
Hello Ellen,

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We are so happy to have you here with us!

Welcome, to Butterflies Among Us! I am sure you will find this site very informative. You will also find all the support in the world here! Please feel free to ask any questions. Please visit the FORUM to find some answers to questions already asked, or post your own question or discussion. You are sure to get feedback! Everyone is so friendly around here, and it’s a fun, easy going place to be. To share stories, make life-long friendships, vent, laugh, cry, support, etc. We are all in this together to get AWARENESS OUT THERE to help fight illness(es), to find better treatments, even better cures! Hugs, xoxoxox ~Butterfly Kimberly (BK)

P.S. FYI it’s easier to "COMMENT BACK" to your comments left on your page. Most members tend to go to “their” page and will see your comment there. Only a certain amount will fit on your page, so you may have more than one pg of comments 

Also, when choosing what emails you want and don't want to receive from this website, please make sure to have a check in the box to receive any mass distributed emails to the entire network, in case I need to inform everyone of something going on with the site! I'd appreciate it, thanks!

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FOR BECOMING A PART OF OUR FAMILY!
At 11:22am on May 21, 2009, John A "Dad Butterfly" said…
Hi Ellen,
myspace comments
Welcome MySpace Comments
I'm very happy that you joined this wonderful group of people here that support and encourage each other in many different ways with the ultimate goal of finding different ways in healing the body and mind.

While your browsing on this site, be sure to go to your settings and check the box to "Receive Broadcast Messages to this Group" in your email settings.

Again, Welcome and glad you joined us, Dad Butterfly

Profile Information

Where did you grow up, and where is your home now?
I grew up in Oregon, now living in the central US
Do YOU have.... LUPUS ~ Fibromyalgia ~ CFS (Chronic Fatigue Syndrome) ~ Migraines ~other? OR are you here supporting someone?
Lupus/Sjogren's (SSA), Migraines, Autoimmune thyroid disease (Graves Disease), Dystonia, Raynaud's, Osteoporosis, malabsorption, lots of medical stuff..... a positive attitude and a smile!
Myspace, Facebook, Twitter or other? If you want to share, please POST YOUR (url/usernames and WHAT social site you belong to) for others to find you and vice versa :)
WEGO Health - Ellen S (I am their Migraine community leader) - www.wegohealth.com

Twitter: ESchnak - www.twitter.com/eschnak

Twibes: ESchnak - twibes.com/eschnak

Living Whole with Chronic Pain Network: Ellen S - http://wholelifeliving.ning.com/

Ardent Cerebrations of Lupus Survivors: Ellen S - http://alupussurvivor.ning.com/
QUESTIONS & FEARS??(Although some read other member pages, questions are best to be entered and type in the FORUM :)
When is someone going to make a breakthrough in Immunomodulation?
When am I going to find a doc who doesn't treat me like another number on his list for the day?
Favorite pastimes? (You may want to share in GROUPS!! :)
Health Activist
Volunteering
Stained Glass
Arabian Horses
Family and Friends
Church
Do you find this site helpful from what you have seen on the main page and anywhere else you may have looked at? Any suggestions or ideas?
Doubling blog posts on forums is confusing. Referring to them in the community might be better - less confusing and redundant.
Would you refer others?
Not sure yet, but looking!
Most Important, how did you hear about this site?
Twitter

Ellen S's Blog

Ellen S

Re-diagnosed Lupus? Are you kidding?

I was diagnosed with Lupus many years ago. Had some kidney issues they were watching, and a few other fairly mild things, but pretty much coasted I suppose. Years later I was "undiagnosed" and told I didn't have it. I had other autoimmunity issues, so stopped putting it on all those annoying questionnaires at the doc's office etc. as I was quite fine "not having" Lupus. Skin symptoms started becoming a problem, and some pretty severe brain issues hit. Was tested again, and again was neg. Just a… Continue

Posted on May 25, 2009 at 6:04am —

 
 

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Allison Abrusci

Plaquenil/Memory

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 n...

Started by Allison Abrusci in MEDICAL QUESTIONS 20 minutes ago.

Sandy Medine

Update Dec. 1, 2009 by Sheldan Nidle

-------------------------------------------------- Dec. 1, 2009 by Sheldan Nidle for the Spiritual Hierarchy and the Galactic Federation 3 Chicchan, 8 Yaxk'in, 5 Caban -----------------------------...

Tagged: Sheldan, Nidle, by, 2009, Dec.

Started by Sandy Medine in NATURAL REMEDIES, HOLISTIC, HERBAL, ETC 15 hours ago.

Sandy Medine

Update Dec. 1, 2009 by Sheldan Nidle

-------------------------------------------------- Dec. 1, 2009 by Sheldan Nidle for the Spiritual Hierarchy and the Galactic Federation 3 Chicchan, 8 Yaxk'in, 5 Caban -----------------------------...

Tagged: Sheldan, Nidle, by, 2009, Dec.

Started by Sandy Medine in NATURAL REMEDIES, HOLISTIC, HERBAL, ETC 15 hours ago.

Niki

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Started by Niki in MEDICATIONS. Last reply by Carla Giacoio 1 day ago.

joy

anyone with fibro living inyorkshire England 1 Reply

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?. Last reply by Carla Giacoio 1 day ago.

Dotti Obert

In Severe Pain 5 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 Shelly Binkley Nov 30.

julie

Lymphoma, or just the lupus??? 22 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 Shelly Binkley Nov 30.

Michelle

My Hysterectomy and HRT 2 Replies

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. Last reply by Shelly Binkley Nov 30.

Kiara

Has anybody been diagnosed with lupus with a negative ANA? 34 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 Shelly Binkley Nov 30.

Vee Marie

Fibromyalgia & Disability Benefits? 10 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 Shelly Binkley Nov 30.

colsbutterflies

ANYBODY LIVING IN FLORIDA?? 4 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 Carla Giacoio Nov 30.

Amy Jill

ANYONE HERE EVERY BEEN ON XYREM / SODIUM OXYBATE

Hello, I was just wondering if anybody here has tried Sodium Oxybate or Xyrem for sleep. I have been going back and forth with this for over a year. But last week when I got my pharmacy newsletter...

Started by Amy Jill in MEDICATIONS Nov 24.

Donna J Farr

Hello Everyone 4 Replies

My Back Surgery has been post poned, so I really don't know when they rescdudle again My Headake are getting worse so it will be a while before they reschdudle. I have to see my family Doctor on Mo...

Started by Donna J Farr in MISCELLANEOUS. Last reply by Donna J Farr Nov 24.

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.

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.

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.

Donna J Farr

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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

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Started by Sandy Medine in MISCELLANEOUS Oct 31.

Sandy Medine

The Cancer Cure Video that circled the globe in 31 minutes

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

Sandy Medine

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

 

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