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First television interview: FOX 17 NEWS: LUPUS AWARENESS!!

Replied Jun 25

Lupus in Dogs
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Started this discussion. Last reply by Geoff Thomas Apr 28.

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MEMORY LANE

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Barb S. and LUPIEBIN are now friends

June 16

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Lupus in Dogs

I know this may seem odd having Lupus myself-but I think my dog may have Lupus. Discoid to be exact. She has fur loss near her nose and it's crusting a bit, and she has lost some fur (very little) below her eyes. Anyone else know anything at all a...

April 19

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March 19

LUPIEBIN joined Butterfly Kimberly's group

MEMORY LANE

A place to come and remember our friends/family (butterflies) that have passed. This is a memorial Group.....

March 17

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February 6

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At 12:17pm on July 3, 2009, David said…

At 9:59am on June 28, 2009, julie said…: Thanks Sue! I commented back to you on the forum. I appreciate the nice response you sent, you are so sweet! And thanks for helping promote lupus awareness!! Hope you are doing well and feeling great!!! Take care, Julie

At 10:33pm on May 23, 2009, Kimber said…

At 6:28pm on May 18, 2009, Sunshine said…: Welcome, thanks for being a friend.

At 1:22am on April 2, 2009, Butterfly Kimberly said…: hey! I'm so glad you got to see the shows! OMG I LOVED going to the tapings for those two shows~ Thanks for the comment too btw...can you imagine that we stood outside at least 45mins to an hour in freezing cold rainy weather? Thank God I had the had for the first show when I asked the question! LOL!!! The guys asked, does anyone know where they got the name Extreme? I apparently could NOT keep my mouth shut, and said, yes, ex-dream....they looked at me funny, and I said (mind you i'm in the front row, and praying I'm right about what I am going to say!) so I said, they were The Dream first, then when Nuno came in, they changed it to EXTREME, EX-DREAM......they said, you wanna get up and do the interview??? HAHAHHAA...I actually stood up and said sure!! LMAO! I wish I lived in NYC i'd be going to those types of things all the time! Can't wait for another chance :) OH, go to Gotham Casting on myspace. There's a video they asked me and my friends to do, and no one else would talk, so she asked me to do it since I had gotten up to ask a question!! It's funny, I DIED when I saw it!!! Um, Gotham Casting, and right at the top of their page next to photos, you'll see videos...let me know! Hope your doing ok, always thinking of ya! I'll be seeing Gary again on the 11th at the Hard Rock for another SlipKid show! WOO HOO!! OH I never posted my recent pics yet!! AH! I have so many from the show from VH1 Classic, and also from the last SlipKid show that was 2days after the VH1 show.....I got so drunk, I normally do not do this, however, I was around soooo many cool friends from all over the world! My cousin even came, so thankfully, I had a couple friends not drinking. I have a pic with me and Gary and I don't even remember the pic being taken!! LOL!! SO bad, but my friends and my cousin told me that I walked up to him and told him I was drunk...LOL...and that he said, yes you ARE drunk, and he was half holding me up, amused....it's my fav pic with Gary!! I'll get it up tomorrow so you can see!! HUGS

At 4:44pm on March 29, 2009, Butterfly Kimberly said…: Hi Sue! Thanks for the comment, I just sent out a broadcast msg (please in your settings, under emails you recieve, to make sure that box is checked to recieve broadcast msgs to the group :) and I posted it also under miscellaneous and my announcements. I'll be taking care of it :) Thanks again!! How are you btw? Did you see Gary and Nuno on That Metal Show? I was in the audience, but they ZOOMED in on me at one point, and I'm in it a lot anyway....lol!!! Hope your doing ok, thinking of you :)
HUGS~Kimberly

At 11:05pm on March 23, 2009, Butterfly Kimberly said…: Hey Sue! OK, Gary and Nuno were on Sat the 21st! They will be replaying them all week on VH1 Classic, or you can go to the site again!! I'm just in the audience this time, without the black hat and jacket! Let me know!! I'll be sitting on the side where Gary comes in :) I'm actually standing when he comes in!! Then there was one point when they showed me for over a couple seconds, it was like a side shot, of me just sitting in the audience....LOL...a friend of mine sent me a text and said, NICE SHOT after that one...LOL!! I LOVE THE CAMERA! Bring it on!! I want to go again!!! HAHAHHA!!! OH how I WISH I had brains like you to come up with something like that!! He completely thru me off!! I was shocked, actually STUMPED myself!! LOL!!! Wish I was quick witty, that would've been awesome! AND they would have shown it too!! HAHAHA!! Ok, bed for me..nite!

At 11:46pm on March 19, 2009, Butterfly Kimberly said…: Hey, go to VH1classic.com and look for THAT METAL SHOW, Season 2, Episode 1 with Vinnie Paul from Pantera....watch PART 2!! I'm the 3rd one to ask a question! It's funny!! I'll be in the audience again for another show this Saturday night 11pm!! WOO HOO! hahaha!! Also, if you have myspace or FB, look for GOTHAM CASTING (39/male) and look at their pics, you'll see some from Season 2, and I'm in a LOT of those! Then look at the vidoes (up at the top near the pic and name where you view pics...right next to that, click videos) and I did the "thank you" to them with a few of my Extreme(ly) awesome friends!!

At 11:06pm on March 18, 2009, Butterfly Kimberly said…: Sue!! Hey I was on VH1 Classic....did I tell you? If you get that channel, Gary and Nuno are going to be on THIS Saturday the 21st (and for that week) at 11pm EST! That Metal Show!! I'll be in the audience for that one, but I was on a couple wks ago and asked the guy a question, and stumped him, and they mortified me...LOL!!!! Let me know so I can tell you. I'm prob gonna post a BLOG about my recent endeavors anyway :)
HUGS!!

At 8:23pm on March 17, 2009, Butterfly Kimberly said…: Sue! Hope you are doing well.....nice to see you around :)

HUGS~Kimberly

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Profile Information

Do YOU have.... LUPUS ~ Fibromyalgia ~ CFS (Chronic Fatigue Syndrome) ~ Migraines ~other? OR are you here supporting someone?

I have SLE, Fibromalgia, Hashimoto Thyroiditis, Raynaud's, Migraines, High Blood Pressure, Asthma, low Vitamin D, Anemia, Insomnia, GERD (lovely) and a partridge in a pear tree1

**EVENTS** (b-days, etc.) tab is at the top of the pages. When you are done registering you can put your info in at any time. You can enter Birthdays (Family member b-days too), Anniversaries, Fundraisers, Walks, etc.!! Enter your info there if you'd like to share!

July 15, 1970 birthday

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 :)

myspace.com/lupiebin

QUESTIONS & FEARS??(Although some read other member pages, questions are best to be entered and type in the FORUM :)

spiders I can see the fangs on,
any type of snake,
heights/flying,
I have no fear of death as I know what lies on the other side is far greater than what is here now. But dying itself may be an issue, and leaving my son/family and what they may go through.

Favorite pastimes? (You may want to share in GROUPS!! :)

Painting/drawing, writing poems,
time with son/family

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?

yes

Would you refer others?

yes-and have

Most Important, how did you hear about this site?

our dear friend Jayne!

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THE SPOON THEORY 38 Replies

ALL OF US SUFFERING FROM INVISIBLE ILLNESS AND DISABILITIES MUST READ THIS! IT IS AN EXCELLENT WAY TO DESCRIBE WHAT WE GO THROUGH TO OTHER PEOPLE WHO DON'T UNDERSTAND US. THIS GIRL SPOKE ABOUT LU...

Tagged: lupus, theory, don't, sick, spoons

Started by Butterfly Kimberly in MISCELLANEOUS. Last reply by Alexis Rene 22 hours ago.

New Here 2 Replies

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 Donna J Farr 1 day ago.

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 1 day ago.

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 Dec 2.

Update Dec. 1, 2009 by Sheldan Nidle

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

Started by Sandy Medine in NATURAL REMEDIES, HOLISTIC, HERBAL, ETC Dec 2.

Scared about Cytoxan 3 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 Carla Giacoio Dec 1.

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 Dec 1.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.