Please take the time to read Christine Miserandino's personal story and analogy of what it is like to live with sickness or disability.

Click HERE to read "The Spoon Theory"

By Sheldon Paul Blau, MD and Dodi Schultz
In my opinion, this is one of the most current valuable books published on living with Lupus. I found it to be very informative and easy to read, without speaking in thick, confusing medical jargon.

Continue reading "Book Review: Living with Lupus - The Complete Guide (2nd edition- revised and updated)" »

Continue reading "Website Review: BetterBraces.com" »

On the message boards, reading our main site/ online magazine, or in day to day conversations, you may find that people use many abbreviations when talking about a diagnosis, a medication or other phrases. This alphabetical list might help you. Please feel free to contact us if you have anything that can be added.

Continue reading "Helpful Medical Abbreviations" »

Seeing the doctor is rarely what i would call fun. You are usually there because you don't feel well and you usually fall into the following categories: Having a diasnosis you thought you had walking into a door- and possibly seeing a new doctor for a 2nd opinion, or a treatment/ investigation of some new symtoms, or your usual treament isn't helping- and you are feeling worse.Being organized might be the best way to help yourself when seeing the doctor about your diagnosis or future treatment.

Nobody likes waiting, especially when you're not feeling well. Patients would rather be elsewhere, and contrary to popular belief, physicians do not like to keep patients waiting. Instead of spending time in the waiting room counting the minutes, you may be able to better use the time by preparing for the doctor visit.

Continue reading "Preparing for a Doctors Visit" »

Continue reading "Book Review: The Velveteen Principles, A Guide To Becoming Real" »

Continue reading "Book Review: Coping With Prednisone - It May Work Miracles, But How Do You Handle the Side Effects (*And Other Cortisone-Related Medicines)" »

Many of us have long-held family traditions, which we feel is our duty to uphold each year. From slow roasting a large turkey and kneading homemade rolls at 4 am on Thanksgiving to baking 40 varieties of cookies around December. (I have only narrowed mine down to 25 varieties, but I'm working on it!) Many of us also face the reality that our illnesses can't always allow us the good fortune of having that much energy, stamina, drive and/or
ability when we set out to do so.

Continue reading "Holiday Tips: Let Go Of The Guilt of Using Shortcuts" »

This may sound disgusting (as it did to me,) but we heard about it last year, tried it, loved it, and I made it again last night! Hey, it's a great way to get rid of the clutter in your post-Thanksgiving fridge and look at it this way - if you hate it, the stuff is still gone!

Continue reading "Easy Thanksgiving Leftover Recipe Layered Casserole" »

It has been said by many people that I am a very good actress. "But You Don't Look Sick" seemed to be all I heard. Is this a good thing? Sometimes it is an appropriate thing to say after a speaking engagement, or when I used to
act in class, etc. Most times I take it for the compliment it is, all the while smiling, knowing exactly what it doesn't mean. It simply means I am not the woman/ the girl I was before. I "act" like a healthy person the best I can. I take on this role as if I will someday win an award for best portrayal of a healthy person. The downside, is that there is no trophy, there is no prize, I just end up alone with my feelings and everything I have kept inside. I act like I don't care- but I do. I act like I am not scared, but I am.

Continue reading ""My Secret is safe with ME" -what I wish people knew about me." »

Continue reading "Website Review: Terrysfabrics.co.uk" »

Authors: R.N., Holly Gautier, M.D., Ernest H. Rosenbaum

Right away this book's title caught my eye. The idea of a book being written from the positive point of view of "survivorship" is wonderful but unfortunately rare. Patients and loved ones want answers on not only how to get better, but what to do once they do get better.

Continue reading "Book Review: Everyone's Guide to Cancer Survivorship: A Road Map For Better Health" »

This is a short novel by a Canadian author, Cheryl Kaye Tardif. I love books that are a quick read, but don't feel "short". These kind of books keep you occupied, especially on planes or doctor's waiting rooms and this is certainly one of those good short stories that you can finish in one sitting. The story keeps you interested and turning pages.

Continue reading "Book Review: Whale Song A Novel by Cheryl Kaye Tardif" »

Christine Miserandino is a writer, blogger, speaker and patient advocate from NY. She also happens to be someone who is living with Lupus. Her writing has been featured in numerous newspapers, magazines, medical newsletters and television media.

From the age of fifteen, Christine Miserandino has been diagnosed with a myriad of illnesses from Chronic Fatigue Syndrome to Epstein Barr, and finally, many years later to a determination of Lupus. Though battling a shopping list of symptoms, Christine has consistently been told, by both well-wishers and doctors alike, “But you don't look sick.” as if that was some kind of compensation for being chronically ill. Many times, being pretty or not sickly looking, made it harder to validate an illness you cannot see.

Continue reading "About The Author" »

When you are craving something hot, sweet and delicious on a cold fall evening, try this!

Continue reading "Recipe: Quick Lower Sugar Cinnamon Raisin Pudding" »

Continue reading "ButYouDontLookSick.com Disclosure Policy" »

Continue reading "Website Review: Anglian Home Improvements" »

Ever see those posters saying "Everything I need to know I learned in Kindergarten?" Well my son is four, only in pre-school, and has taught me a ton. I find this particularly humorous, because this is the kid who insists he can go on a field trip to the future. (I usually tell him Why not?!)

Continue reading "Humor: Everything I need to know, I learned from my 4 year old." »

For us "spoonies," trying to remember our day to day tasks is hard enough. But trying to remember dates, special occasions and gift giving is close to
impossible, especially with the fog that sometimes comes with being sick or as a side effect of medications. We want to be thoughtful, but just don't have the energy to get to the store or remember the special events in everyone's lives. I think I may have found a solution!

Continue reading "Product and Service Review: forgetmeneversolutions.com" »

My tree stand was custom-built just for me. If I was going to continue sitting out in the woods every fall, I had to have something I could handle. Rheumatoid arthritis made a ladder stand impossible for me to climb, so my husband designed one with steps just six inches apart. Now, despite my handicaps, I could hold the rail, walk up the staircase safely and retreat to my “quiet place.”

Continue reading "Essay: On Higher Ground" »

The holidays are upon us. Though most articles are about the perfect Thanksgiving or Christmas spread, what about all of the everyday meals in between, during this busy holiday season? It’s hard enough to find the energy to shop and plan for large family get-togethers, and most healthy people (let alone “Spoonies”) will rely on takeout or fast food to fill the daily gap. But at a time when we’re trying to maintain our energy and health to the best of our ability, this habit can wreak havoc on our bodies. This is when having a few necessities on hand is important in order to create nourishing, whole-food meals while saving those “spoons”!

Continue reading "Seasonal Tips: Ho, Ho, Ho-Oh No! What’s For Dinner?" »

Shop and help support this site at the same time!!

With the holidays and christmas shopping.....Just a reminder that if you shop through amazon.com please shop/click using this link:

It has a code in it that tracks the purchases and makes butyoudontlooksick.com 5% of the total sale. This helps us run this website and keep the message boards etc. running! Every little bit helps!!!

Please save this post to come back and click through..... :)

Thanks! :)

A poem submitted by one of our readers.

Continue reading "Poetry: I'm Sorry" »

My "Waiting Bag"- Since I unfortunately spend alot of time in doctors' waiting rooms, I quickly learned to make the most of this seemingly wasted time.

Continue reading "What to Do When You Are Waiting to See The Doctor" »

(EDITORIAL NOTE: This is an update to TRAVEL TIPS article written for butyoudontlooksick.com in March 2005. This was and still is one of our most popular and helpful articles. Click here to read the original.)

If you haven't flown for a few years, you may be confused by the new Transportation Security Administration (TSA) rules or how best to abide by them. Here are some up-to-date suggestions for dealing with
security checks in airports and traveling with assistive devices such as wheelchairs:

Continue reading "Air Travel Tips for the Chronically Ill: Meeting TSA Regulations, Wheelchair Advice" »

Things to Avoid and Things to Embrace Over the Holiday Season. Sometimes you just have to laugh.

Continue reading "Sick Humor: Holiday Season" »

I think I am going to go broke! I have a new shopping addiction. I just had a baby and thought I would be sick of pink and lace and "babyish" clothes. I am so happy I found tottooparlor.com. I think I may be addicted. I love that the styles and patterns are all clothes that I would wear or pick out and now I can find "matching" stuff for my daughter! I think that many times when you become a mom, there are certain expectations of how you should dress, or your baby should dress. I think it is so much fun to keep your individual style, still be a "mom" and pass that unique style on to your kids. If you do not stay "true to who you are" and what you like, how can you expect your kids to?

Continue reading "Product Review: tottooparlor.com Baby and Kids Clothes" »

We are coming upon the time of year when people are more giving and thoughtful of their fellow humans all around them. A time of year where people reflect on their lives and wonder what a new year may bring. So where did the other ten months go? What is so different about now?

Continue reading "What is the meaning of giving?" »

It is never too early to get into the holiday spirit! Try this easy winter snowmen craft project to keep for yourself or to give as a gift.

Continue reading "Easy Holiday Craft: Light bulb Snowmen Ornaments" »

Let’s face it: struggling with an invisible disease like Epstein-Barr and Chronic Fatigue can make you feel “Less Than”.
Less Than Normal.
Less Than Worthwhile.
Less Than Zero.
In fact, most people who believe in metaphysics (the idea that your inner thoughts create your outer circumstances) call this the “Disease of Low-Self Esteem.”

They may have a point. I know that every day I have a flare-up, I struggle with the guilt of not being "like other mothers" of four-year-old sons; parking us in front of Playhouse Disney on a sunny day instead of running
around the park; microwaving day-glow orange pasta on a rainy night when every fiber of my love-to-cook being wants him to have fond memories of my homemade mac n’ cheese when he grows up. I have always had this insane drive to be "The Best" at everything I did: the Best Writer, or the Best Decorated House at the Holidays. I hated falling short of other people's expectations ("It's noon and you aren't dressed yet?", "You're calling out of work AGAIN?"). But you know what? Even when I was “healthy”, I was miserable!

Continue reading "Essay: In Praise of Ringo Starr" »

A Poem submitted by one of our readers.

Continue reading "Poem: I don't look sick" »

14th Annual Walk-Along for Lupus was on Sunday October 21, 2007. It was a sunny and breezy beautiful day. As of November 2, 2007, The Lupus Alliance has received over $246,000.00!!!! Every day there is more money coming in! (You can still donate to our team)

I was happy to hear that our team - The Donato-Miserandino Team was once again one of the highest raising family teams. I was so proud to have so many people walk with me there that day, and support us through out the past month or so in my fundraising efforts. I believe that my team has raised well over $8,500 and I have more checks and donations that have come in late.

It feels great to once again (This being our 12th year walking) to raise funds for this great cause. I want to give back to the organization that has helped me and countless others. But it also was an amazing feeling to be walking with family, friends, Alumni sorority sisters, and butyoudontlooksick.com friends.

Continue reading "Lupus Walk 2007 Update Team Miserandino (with pics)" »

This year it’s easy to break out and try a new gift idea. It’s never too early to start and some are even great for the last minute. But what do you get the people who have everything?

Continue reading "Gift Tips: Time to Start Thinking About The Holidays" »

Christine Miserandino's writing and speaking engagements:

• Media: Television
  
  Keeping Kids Healthy : Lupus A Medical Mystery - Featuring Christine Miserandino
  Keeping Kids Healthy (PBS and American Public Television) Nationally Syndicated won a 2005 New York Emmy Award (11/2005) re-aired (2/2006, 3/2006, 6/2006) EPISODE 401 - Lupus: A Medical Mystery
   
• Online
  
  1/ 24/08 -Christine has been interviewed for today's CNN.com "empowered patient" column.
  
  Empowered Patient, a regular feature from CNN Medical News correspondent Elizabeth Cohen, helps put you in the driver's seat when it comes to health care. This week's topic asks the question, "Are you an obnoxious patient?". Christine was quoted in tips # 3, 4 and 5! Ms. Cohen was easy to speak with and it was a pleasure to work with her. I hope to again in the future as patient advocacy and empowerment is something I feel so strongly about.
  
  Story Highlights Be an informed, confident patient, but also listen to your doctor's view Don't demand a prescription without an office visit Share, but don't overload, your doctor with info you've gathered independently If you need more than 15 minutes, make special arrangements beforehand
  
  To read the whole story:
  http://www.cnn.com/2008/HEALTH/01/23/ep.obnoxious/index.html?iref=newssearch
  
  2/9/07 - Christine Interviewed for CNN.com Blog on Friday, February 09, 2007 for CNN.com "Paging Dr. Gupta" medical/health blog.  the article was called "Handling a friend's diagnosis."  It has tips for what to do when visiting someone who is sick.  You can read the full article here.
   
• Print Media: Medical and Health Related Newsletters
  
  Emerge - Quarterly journal of CFS / ME Victoria Vol 26, No 1 Autumn 2007 - "A Lesson in Adapting from my Dog"
  
  Emerge - Quarterly journal of CFS / ME Victoria Vol 26, No 4 Summer 2006
  
  New Jersey Chronic Fatigue Syndrome Association Spring / Summer 2006 Newsletter
  
  Southern Colorado Pulmonary Hypertension Group - June 2006 Newsletter
  
  Bergen, NJ CFS Support Group Newsletter / April 2006 Vol. III, Issue #28
  
  Nationally Syndicated Column "DISABILITIES" (Week #183) "LUPUS OFTEN MISUNDERSTOOD" March / 2006
  
  Lupus Link Ontario, Volume 4 Issue 1 Winter / Spring 2006
  
  ButYouDontLookSick.com has been featured as a resource NorthCoast SLE & FMS Support Group Newsletter March 2006 - Feature story about ButYouDontLookSick.com E-Magazine
  
  NorthEast Fibro-Items Newsletter Volume 7 - Spring Issue featured article "Addition by Subtraction"
  
  Access Press, Volume 16, Number 11, November 10, 2005
  
  PEP Talk Newsletter September 2005
  
  PHA Volume 3 Issue 1 Spring / Summer 2005
  
  Hypoparathyroidism Newsletter June 2005
  
  RSDhope.org - February 2005
  
  Pulmonary Hypertension Association - February 2004
  
  Spondylitis.org - May 2004 News section - quoted "The Spoon Theory"
   
• Print Media: Newspapers and Magazines
  
  Herald Community Online (February, 2005 NY) 'She never looked sick' - Personal interview and feature story
  
  The Valley Stream Herald (September, 2004 NY) 'Take a walk for Lupus V.S. woman, family will celebrate 11th annual Lupus Alliance fund-raiser Oct. 17' - Personal interview and feature story about fundraising for Lupus Walk
  
  Long Island Woman Magazine (May, 2004 NY) 'Living With Lupus, A Young Woman's Journey'
  
  The Valley Stream Herald (February, 2004 NY) ''But you don't look sick' Valley Stream woman takes steps to increase the public's awareness of Lupus'
   
• Media: Speaking Engagements
  
  Christine Miserandino is a featured speaker for Invisible Chronic Illness Awareness Week September 10-16, 2007.
  
  The Lupus Alliance of America Long Island / Queens Affiliate June 2007 "Kids and Teens" Panelist
  
  The Lupus Alliance of America Long Island / Queens Affiliate "Growing up with Lupus" Symposium June 2006
  
  GFWC Pocono Mountain Women's Club - March 2005
  
  Phi Sigma Sigma, Hofstra University - Women's Health and Wellness Fair
   
• Awards Won
  
  4/27/08 - Lupus Gala Brunch Honoree
  Lupus Alliance of America- Long Island/ Queens Affiliate
  
  8/2007 - ButYouDontLookSick.com website has won a Hope Award 2007. The Hope Award is given to websites that offer positive support and encouragement to people suffering from chronic illnesses, and is awarded by IBSTales.com, a site for irritable bowel syndrome sufferers.
  
  8/2007 - ButYouDontLookSick.com is a winner of one of HealthCentral's 2007 Top Sites Awards
  
  7/2007 - ButYouDontLookSick.com has been listed as number 54 on EDrugSearch.com Healthcare 100 - The world's top blogs on health and medicine.
  
  11/2006 - ButYouDontLookSick.com has been selected as the website of the week by LongIsland.com.
  
  11/8/2005 - KSDK News Channel 5 "Website of the Day"
  
  11/7/2005 - WKKG 101.5 Indiana Country Radio featured "Website of the Day"
   
• Blogosphere
  
  We at butyoudontlooksick.com are proud to be mentioned frequently in the health and medical blogosphere. We can not list all entries, but below are some noteworthy posts.
  
  1/22/08 Grand Rounds medical blog host
  
  1/4/08 Thanks to Amy Tenderich at Diabetesmine.com, who wrote an article called "Life, by the Spoonful" where she talks about living with Type 1 Diabetes and uses "The Spoon Theory" to talk about her life and the daily management of her disease.
  
  1/4/08 At Dlife.com, Amy also mentions us in her weekly column called "Straight up". This week she talks about explaining the demands of living with a chronic illness in an article called "Counting Spoons".