| Please help support my fundraising efforts in Lupus Walk 2009 |
[Aug. 29th, 2009|03:42 pm] |
| [ | Tags | | | lupus | ] |
| [ | mood |
| |  cheerful | ] |
* Please forgive me if you have received this letter twice.
Hello Everyone,
My Family has been walking for 14 years in the Walk along for Lupus
on Long Island. Last year my team rose close to $11,000!!! I know I
am starting a tad early....but we want to beat that goal this year
and make this our best year yet! I know we can do it!
Here is the donation link: http://www.firstgiving.com/cdonato
I have had Lupus for over 16 years. This disease has given me unbearable muscle and back pain, serious organ involvement, central nervous system involvement and even severe depression. I must take over 15 pills a day to keep my self healthy. This disease can be such a burden to my day to day living as well as my family's. I am so blessed to have a good support system that loves me and helps me through this crazy life with lupus!
I can not thank all of you enough for supporting me and my passion to
raise funds and awareness for this disease. I have amazing friends,
family, and bydls.com buddies who always are there for
me. I am so blessed. I have a wonderful husband, and a miracle baby
daughter Olivia. I thank the Lupus Alliance for all their support
throughout the years.
Recently, we were honored by The Lupus Alliance for our volunteer
work. The work of the Lupus Alliance is so important. This year I am proud to have become a member of the board of directors. I am so
grateful to Lupus Alliance, and this is my way of "giving back".
I know being charitable is so difficult during these hard economic times, so please donate what you can, no donation is too small...(or too large) Donating through this website is simple, fast and totally
secure. It is also the most efficient way to support my fundraising
efforts. Feel free to join our team and raise funds yourself!
Here is the donation link: http://www.firstgiving.com/cdonato
*********Please help by passing this email/ link along to anyone you
think may be interested. For those who are computer savvy... please post to your facebook, twitter accounts, blogs, etc! They can donate on this page, or make their
own page and join our team! we would LOVE to have you join us that day. The More the Merrier!!!!
Many thanks for your support and encouragement.
Thank you. With Love,
Christine, Frank and Olivia Emma
butyoudontlooksick.com
PS- If you would like to send a check instead, please contact me for
the address. |
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| 3 contests ending this week- butyoudontlooksick.com needs your help! |
[Jan. 13th, 2009|02:19 pm] |
HI Guys,
I am a finalist for 3 contests that are ending this week! I am thrilled and honored- but now because all 3 are this week I think I may be splitting the vote kida, because people think they voted already when they voted for 1 etc. now I am not winning any. I had my hopes up. I am honored to be a finalist-- but I still want to try my best to win. I need your help big time! please get the word out- and/ or go vote yourself if you havent yet! PLEASE post to any other message boards, to your email lists etc. we need all the help we can get!
GO SPOONIES!!!! I know if we all pull together we can do this! we are soooo close!
info on 3 contests w/ links below!
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1 vote per email addy: http://www.wellsphere.com/voteBlogger.s?bloggerId=93805
1 click- easy vote 1 per ip. http://medgadget.com/2008bestpatient.html
Are you on Twitter? Vote for me as a finalist in health for the shortyawards! http://www.shortyawards.com/user/bydls
Thank you, love and spoons!
-Christine
www.butyoudontlooksick.com
ps--- please pass this on if you can!!! |
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| ButYouDontLookSick.com gets NEW upgrades! |
[Dec. 6th, 2007|11:42 pm] |
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ButYouDontLookSick.com gets NEW upgrades!
We are always working hard to make our website the best it can be. Now we are better then before! You have been asking for some of these new features, and we have been listening! We are very proud to announce new upgrades and site features! If you have not been to our website lately - please come to check out some of these new exciting additions!
1. NEW Daily Emails -- We have upgraded our system so now you can receive daily automatic emails with our newest articles. Many of you have expressed interest in this feature, so that you can conveniently read any new content to our site. *Please note that we will no longer be using our yahoo newsletter. If you are signed up for our newsletter- you will have to
sign up for this service separately. Please visit www.butyoudontlooksick.com and click on the envelope icon in the top left section of our menu. Now that we have made a commitment to new articles EVERY SINGLE DAY, this daily update is even more important than ever. PLEASE take a moment now to sign up for this service.
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2. "Email this article to a friend" -- Now on the bottom of every new article you will find a few text buttons. The first button says "email this". When you click on this button, it gives you the option of emailing the article to one of your friends. Now when you read an article on butyoudontlooksick.com and you think one of your friends or family would find it interesting, you can email them the link!
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3. Comment on our articles. -- Do you have something to say? Do you have more tips, or do you agree or disagree with an article at butyoudontlooksick.com? Now you can have your say. On the very bottom of each of our articles there is a comment box. Just fill out the form and your thoughts will be published for all to see!
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4. Share butyoudontlooksick.com with your friends on your social book marking sites!
We have added text links to the bottom of every new article so you can easily share your favorite articles with your friends on facebook, Digg, del.icio.us, Newsvine, Stumbleupon, and Reddit. (If you have any suggestions of other sites you would like us to add, just let us know in the comment section of this article.)
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5. RSS/XML Feed for butyoudontlooksick.com articles
We have a new feed service that makes it easy receive content updates in My Yahoo!, Google, Newsgator, Bloglines, and other news readers. What is an RSS feed? "RSS" means "Really Simple Syndication." But that is just a fancy way of
saying that you can keep up with all the updates on ButYouDontLookSick.com without having to check the site every week to see "what's new" or to read a new article. If you are a website owner or publisher, you can use this service to have our articles automatically be sent to your site and be updated in real time. To get our feed, visit www.butyoudontlooksick.com and click on the 'Subscribe' link/ blue icon at the top left section of our menu.
** Thank you for your support. We hope you like the upgrades! Keep your eyes out for more new features in the future.
I'll keep writing, if you keep reading! :)
-Christine
http://www.ButYouDontLookSick.com
The BYDLS message boards/chat- come join the fun!
http://www.butyoudontlooksick.com/boards/
Shop at the NEW ButYouDontLookSick.com shop:
http://www.cafepress.com/bydls |
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| SPOONS AND LOVE - Monday 26th November marks the 3rd anniversary of our message boards! |
[Nov. 25th, 2007|11:44 pm] |
Hey Spoonies!
A few of you have been on butyoudontlooksick.com from the beginning, and many of you have joined us on our journey, tomorrow Monday 26th November marks the 3rd anniversary of our message boards!
So we thought we would celebrate that! And we would love for you all to come help us celebrate! Since it is our 3 year anniversary of the message boards- we thought we would give you 3 ways to celebrate. Do 1 - Do them all- either way have a ball! :)
1) We thought it would be fitting for everyone who can, to take a pic of spoons, you with spoons , wearing "spoon gear from our cafepress store .. or a bouquet of spoons, spoons in a jar, or a vase or anything!! Whatever your heart desires, then post them in our anniversary thread on our message boards! Not only will this be fun for the group to share- but Christine will post some of these pictures online on the main site.
2) We are hoping you can join us for a chat in our chat room. We were thinking because it's 3 years, maybe we could have 3 chats ? (Plus this makes it easier for those of us in different time zones/ or work hours etc.) One at 5pm eastern usa time, for those who can make that chat, or for those overseas in Europe, that would be around 10pm GMT. Another chat at around 9pm Eastern time, and then another at 11 pm, Eastern. Heck-- who knows-- this might even help us beat our "most online users" record. Why not use this opportunity to "invite a friend" to butyoudontlooksick.com. Send out the link, spread the word, and help introduce someone new to this great place on a day that you know it will be extra busy and extra friendly!
3) Last but not least, We are asking everyone the simple and easy request to "spoon the world". (hee hee :) What this means is that you post a picture of a spoon, or our logo, etc anywhere you can with a LINK to butyoudontlooksick.com, the spoon theory, or the message boards. Use Facebook, livejournal, twitter, blogger, myspace, other message boards, put in your away messages, your emails, your email address book! Spoon your blog! If you are a writer, take this chance to write about how your first found us, or when you forst read the spoon theory, how you live your life with spoons. Write spoon poetry! Make Spoon Art! Go Nuts! Go Spoonies! Spread some Love and Spoons! Let's see if you spread some spoonie love - if it will come back to you. Last time I did this I loved seeing the random places I would start to see spoons start popping up! It really made my day! If you posted anything spoonie related or a link to us etc--- let us know!! :)
Here are some helpful links:
Click here for butyoudontlooksick.com avatars/ aim/ banners and logos: http://www.butyoudontlooksick.com/2005/11/link_to_us.php#more
Click here for easily printable (paper) butyoudontlooksick.com notecards: http://www.butyoudontlooksick.com/2005/11/butyoudontlooksickcom_notecard.php#more
Click here for 10 super new easy ways to help promote our site. http://www.butyoudontlooksick.com/2007/08/easy_ways_to_help_promote_buty.php#more
Most importantly have fun!! Yay for Spoons!
Let's get an early start now, and give others the inspiration to start spooning tomorrow!!! Email tis to any fellow spoonie that you think we may have missed. Please come to the boards tomorrow! Lets raise a toast to this wonderful community that Christine and the god people at Butyoudontlooksick.com created.
Happy 3rd Anniversary Spoonies!
Love and Spoons!
-Christine
www.ButYouDontLookSick.com
ps-- Big Thanks to Wendy, Cath and others for the suggestions!!!
PPS- For those on this exclusive newsletter-- you get these coupon codes to shop in our butyoudontlooksick.com cafepress store!!!
Save $10 off $50
use the code HOLIDAY2007 at checkout
Expires 12/14
$15 off $50
use the code FRFAM2007 at checkout
Expires 11/27
** Shop at the NEW ButYouDontLookSick.com shop **
http://www.cafepress.com/bydls
The BYDLS message boards/chat- come join the fun!
http://www.butyoudontlooksick.com/boards/
The ButYouDontLookSick.com newsletter!
http:// www.groups.yahoo.com/group/bydls/join |
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| Happy 4 year Anniversary ButYouDontLookSick.com!!! |
[Aug. 13th, 2007|12:22 pm] |
Hi Everyone,
I am proud to announce that butyoudontlooksick.com is celebrating it's 4 year anniversary! What an amazing 4 years this has been.
We have grown leaps and bounds! We started with just a few pages of content, and grew to have a newsletter, message boards , chat room , and online store . Our website has now grown to an e-zine with new articles being published every day! We have members from around the world who have formed a close knit community of support and friendship. In the past year we have had the honor of being on television, featured in magazines, and newspapers and winning awards .
If you haven't visited us in a while- I encourage you to come and take a look! With new articles every day and with over 3,500 members talking on the message boards- there is always something new to discover.
In addition to the continued growth and success of butyoudontlooksick.com, I have personally had an amazing year! We just celebrated the birth of our daughter Olivia Emma who was born on July 18th. She is a happy healthy miracle baby. Although she is a few weeks old...she has taught me so much. She has taught me to believe anything is possible. She has taught me that I am capable of so much more then I ever thought. But above all, she taught me not to give up. I have spent over half my life knowing that my body- due to lupus has not been the most reliable. I was used to my body letting me down, and for me to make concessions. For once, my body proved me wrong. It helped grow this perfect little baby.. and now I believe in miracles.
With love and gratitude to the butyoudontlooksick.com for another amazing year,
-Christine
http://www.butyoudontlooksick.com
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COUPONS - COUPONS- COUPONS for the butyoudontlooksick.com Store!!
** Share this coupon with your friends!**
Shop here:
http://www.cafepress.com/bydls
Today's Special! Save $5 off orders of $50 or more
Use coupon: BACKTOSCHOOL (Expires Aug 31, 2007)
$10 off 50 coupon code: COUPONTEE (exp 8/31/07)
Save $5 off $40 use the code SRV159D at checkout
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Once again- our team is walking in the Lupus Walk this fall in NY.
Please click here to learn more about the walk, or to donate.
This is our 12th year walking, and we hope to beat our goal!
Every donation counts!
http://www.firstgiving.com/cdonato |
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| Today is ButYouDontLookSick.com INVITE A FRIEND DAY! |
[Jun. 27th, 2007|05:34 pm] |
Today is ButYouDontLookSick.com INVITE A FRIEND DAY!
Help us spread the word! Do you have a friend who you think would enjoy this website, or the message boards?? Maybe he or she would enjoy becoming part of our group! Please feel free to invite her to join us!
Here are some easy ways to invite a friend to Butyoudontlooksick.com:
1. Send a quick email to your email address book with a short note saying why you like the site and ask them to visit too!
2. Give the link to your buddies on AOL IM, yahoo messenger, or other instant messaging services.
3. Post or "share" the link if you belong to facebook, myspace, livejournal, digg.com, stumbleupon.com, or other sites like that. (Remember to also post on facebook and myspace's group section too)
4. Post a link or banner on your personal website, myspage page etc. Links can be found here:
http://www.butyoudontlooksick.com/2005/11/link_to_us_1.php#more
5. ADD A SIGNATURE FILE TO YOUR EMAILS, or AOL instant messenger profile etc.
To find out how to add the sig file look in the "help" section of your specific email program. A signature file looks like this:
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Spoons, Spoons, Spoons.... Find out what they are all about!
(and find out a little bit about me too!)
http://butyoudontlooksick.com
*****************************************
6. Post a link or a posting about butyoudontlooksick.com to any other message boards, or email lists that you belong to.
Remember you can tell your friends about the message boards specifically, or the e-zine/ main website articles specifically, or the butyoudontlooksick.com store!
Thanks so much!
PS- Here are some other ways to help out butyoudontlooksick.com:
http://www.butyoudontlooksick.com/2006/11/easy_ways_to_help_promote_buty.php
As a Thank you for your help with butyoudontlooksick.com "Invite a Friend Day" We are offering you a coupon to our butyoudontlooksick.com store.
Save $5 off $50
use the code MOTIONGOATS at checkout
Expires June 29th
Save $10 off $40
use the code DES158 at checkout
Expires July 1
Save $3 off $10
use the code NCD158 at checkout
Expires July 1
Shop at the NEW ButYouDontLookSick.com shop:
http://www.cafepress.com/bydls
Thank you,
-Christine
www.ButYouDontLookSick.com
The BYDLS message boards/chat- come join the fun!
http://www.butyoudontlooksick.com/boards/
The ButYouDontLookSick.com newsletter!
www.groups.yahoo.com/group/bydls/join
Shop at the NEW ButYouDontLookSick.com shop:
http://www.cafepress.com/bydls |
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| Keeping Kids Healthy: Lupus A Medical Mystery- featuring Christine Miserandino |
[Dec. 12th, 2006|11:00 pm] |
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| | | "Keeping Kids Healthy: Lupus A Medical Mystery- featuring Christine Miserandino" on Google Video |  |
What happens when you know your child is sick, but no one can tell you what's wrong...sometimes for years? Lupus, a debilitating disease, is still a medical mystery. Join Dr. Winnie King as we attempt to unravel this mystery on a full-show episode of Keeping Kids Healthy. Without a single known cause, no simple test for diagnosis and symptoms so vague and so varied, Lupus can often elude the doctors trying to detect it. But learning about Lupus is actually the first step in detecting it. You'll hear from a young woman who lived with Lupus since she was 14 but wasn't diagnosed until 22; a 13 year old who was only diagnosed last year; hear the story of how one mother refused to give up until her daughter's condition was diagnosed and hear a Lupus expert discuss symptoms, treatments, care and the latest news on medical advances in Lupus research.
Topics Covered:
* What is Lupus?
* Symptoms of Lupus.
* Diagnosing Lupus.
* Why is it hard to diagnose?
* What is it like to live with Lupus?
* Having Lupus even though you "don't look sick”
* Treatment and care for those with Lupus.
* Living every day with Lupus.
Guests:
* Christine Miserandino - 26 yrs old (began getting sick at 14 and diagnosed with many things for eight years. Only diagnosed with Lupus when she was 22)
* Janet Miserandino - Christine's mother
* Natalie Fouche - 14 years old (diagnosed with Lupus at age 13)
* Marie Fouche - Natalie's mother
* Thomas Lehman, MD - Chief, Division of Pediatric Rheumatology at the Hospital for Special Surgery in New York, NY; Professor of Clinical Pediatrics, Cornell University Medical College; Author of more than 40 published works including It's Not Just Growing Pains: A Guide to Childhood Muscle, Bone and Join Pain, Rheumatic Diseases and the Latest Treatments.
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| 5$ off coupon- NEW slogans and designs...pass it on! |
[Nov. 29th, 2006|07:00 pm] |
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Hi Everyone, We are happy to announce that we have taken your suggestions and added MORE designs and slogans to our online store! We will be adding even more designs in the weeks to come- so make sure to save the page in your "favorites" and check back. These make great gifts for anyone on your Holiday shopping list... including yourself! With gifts starting as low as $3.99....You can shop for stockign stuffers, or great gifts like T shirts, teddy bears, hoodies, and bags! and with the new shirts and gifts.... a new coupon!! 5$ OFF COUPON! :) They even have free shipping for the holidays! use the Coupon Code: ATHENSPLANKS
Expires: Dec 05, 2006
-and get $5 off $20 shop at http://www.cafepress.com/bydls **use this coupon for yourself, or Pass this on to your friends for some "christmas gift hinting:) Good friends help friends save money. lol __________________________________________________________
In addition to our over 20 designs...some of our new slogans are below: * The Prednisone "Make Over" Shirt
Ever been on Prednisone? Know someone who has? This shirt will be sure to be a hit! A great "get well gift" or thinking of you gift for anyone with Lupus, Fibromyalgia, or anyone who takes prednisone.
http://www.cafepress.com/bydls/2135815 _____________________________
* Warning: Bad Flare Day!
Having a "bad flare" day? If you wan't to warn the world, without saying a word- get this! If you know the term "flare" all too well- this is the gift for you. For those friends with lupus, fibromyalgia, chronic fatigue syndrome, and more...
http://www.cafepress.com/bydls/2135985 ____________________________
* I am TOO TIRED to argue with you!
I am TOO TIRED to argue with you! This slogan says it all! Tired, exhausted, sleepy... too tired to even talk. Tell them how you feel with this gift.
http://www.cafepress.com/bydls/2136275 _____________________________
* Hug Me! (I am not contagious!)
Hug Me! Let people know it is ok to hug, touch, laugh and play. Perfect gift for someone in the hospital. Let everyone know that what you have isn't "catchy" :)
http://www.cafepress.com/bydls/2136467 _____________________________
* Wanna Nap?
Need a nap? Sometimes you are just so tired that the thought of a nap is bliss! Forget movies, hot dates, dinners, dancing... just nap!
http://www.cafepress.com/bydls/2136590 _____________________________
* This disease must be doing wonders for my appearance, everyone keeps telling me how good I look!
Finally a response to all the well-meaning people who tell you how great you look, when you are sick.
http://www.cafepress.com/bydls/2136729 ____________________________
* I am not lazy. I am on chemo. What is your excuse?
Have you been experiencing fatigue, exhaustion, foggy brain and more from your chemo treatments. Do you want everyone to know that it is the treatments and not "you"?
http://www.cafepress.com/bydls/2137117 ____________________________ Listing of all our current shirt designs:
» I am not Lazy. I am on chemo.
» How Good I Look!
» Wanna Nap?
» Hug Me! (I am not contagious)
» Too Tired to argue with you!
» Warning: Bad Flare Day!
» Prednisone Make Over
» How do you feel? Don't ask.
» Your Imaginary medical expertise
» "Spoon Gear"
» Wishing you an Abundance of Spoons
» The "To Do" List
» But You Don't Look Sick?
» Red Tape Fragile Design
» FRAGILE Handle with Care - Heart
» Do I Look Sick? Invisible Diseases Suck!
» Sick and Tired of Being Sick and Tired?
» Addison's Disease Sucks!
» Endometriosis Sucks!
» Lupus Sucks!
» I Have Lupus... What's Your Excuse?
» Fibromyalgia Sucks!
» Fibromyalgia is a Pain in the...
» Arthritis Sucks!
» MS multiple sclerosis Sucks!
» RSD Sucks!
» Ehlers Danlos Syndrome EDS
» Cystic Fibrosis Sucks!
» Myasthenia Gravis Sucks!
» Sarcoidosis sucks!
» Costochondritis Sucks!
» Celiac Disease Sucks! Thank you, -Christine
www.ButYouDontLookSick.com The BYDLS message boards/chat- come join the fun!
http://www.butyoudontlooksick.com/boards/ Shop at the NEW ButYouDontLookSick.com shop:
http://www.cafepress.com/bydls
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