The Virtual Water Cooler

Celebrating the Good Days

So often we focus on the bad days with IBD. But there are good days. Good days with no flare ups, few symptoms – days when IBD sits quietly in the background.

The next time one (or hopefully a long string) of these days roll around this summer, take a minute to celebrate and appreciate it. Even if it’s only to pause and make a mental note that good days happen.

 Here’s a song/video to help you celebrate the good days

 Black Eyed Peas Perform ‘I’ve Got a Feeling” at Oprah’s 24^th Season Opener (complete with flash mob)

http://bit.ly/pKDSYl

Summertime Motto - Be Prepared!

I live in a historic area of Boston and summertime brings in a steady stream of families touring nearby sites. Some residents find it a nuisance. I think it’s a wonderful reminder for each of us to take a little time away on these slower, longer summer days to do something special. 

When a member of your family lives with IBD it may seem a bit more difficult to do. In this case, a little preparation can go a long way to ease these anxieties. For a ton of great tips to help make travelling with IBD easier, visit the Peds IBD Travel Section where you'll find information about

• Air/Car Travel
• Interstate Restrooms
• Travelling with Prescription Medications
• Travelling Outside of the U.S.

and more. I hope these resources will encourage you and your family to get out and enjoy a wonderful vacation by preparing ahead for IBD related issues.  Happy summer!!

Winter Charity Concert Success!!

Wanted to let you all know how the Winter Blues Charity Concert went.

The 3^rd Annual Winter Blues Concert was held at the American Legion Hall on February 12^th with local band Men of Cause and went off without a hitch: a full house, rocking 125 people and raising almost $6,000 for pediatric IBD research. Congratulations on another successful year!

Larry Kramer, event organizer and lead singer, told us “The band had a great time entertaining the audience 8:30pm-midnight, raffling off 35 gift cards and sporting tickets, and treating the crowd to a few guest musicians and singers.  I want to thank everyone who came out or mailed in donations, thank Roche Bros. of Millis for donating their food, and I’m especially grateful to my band mates for the support of these two charities since these diseases affect two of my three school-aged daughters each day.”

Bassist and co-organizer Andy Spencer added “It’s always fun putting on a this winter show, and in three years we’re proud we’ve raised almost $20,000 towards research and educational funds for charities helping 1.5 million people in the US impacted by these diseases.”

The music was a lot of fun with blues favorites, 80's hits and a Monkees song sung in Italian! The band was great and the crowd sang along, a really enjoyable night out.

A huge thanks to the band Men of Cause and to everyone who came out to support pediatric IBD research. It really shows how everyone can make a difference.

To find out more about how you can support pediatric IBD research right from your computer, please go to www.pedsibd.org and give a gift in any amount. Thank You!

Third Annual Winter Blues Charity Concert

 

 

 

 

Join us for a night of music and fun to forget about snow for a while!!

 

When: Saturday, February 12, 2011 at 8pm

Where: American Legion Hall, Peter Kristof Way, Medfield

Featuring: Men of Cause (formerly Mid-Life Crisis)

We have just the cure for your Winter blues! Dance the night way, catch up with friends and neighbors and take a chance at 35+ raffle items as Men of Cause prepares for another  entertaining and memorable evening for their third annual Winter Blues Charity Concert to benefit CCFA as well as The Pediatric IBD Foundation (PEDSIBD).

Men of Cause, formerly known as "Mid-Life Crisis", consists of long-time Medfield residents Larry Kramer (lead vocals, guitar, harmonica) and Andy Spencer (bass, vocals), Joe Luongo of Walpole (drums) and Stefano Bellezza (lead guitar, vocals) of Roslindale/Rome.   Since forming mid-2008, the band has played ten concerts including four fundraisers which cumulatively raised $21,000 for charity.  The band plays classic rock to modern covers with some special guest singers and musicians, and its parodies "Sweet Home Massachusetts" and "Suburban Paradise" have been viral hits on YouTube, and were also featured on the Boston.com website.

The show starts at 8:00pm on Saturday, February 12th at the American Legion Hall on Peter Kristof Way in Medfield, and will include a dollar raffle for multiple Red Sox, Bruins and Celtics games, as well as many local restaurant and shopping gift cards.  Appetizers, snacks, and desserts will be provided, along with a cash bar. 

Concert tickets are $20, available from band members and at Lord's Department Store.

For more information, you can contact:
Larry Kramer
(508) 359-1707
larry_kramer@comcast.net

Hope to see you there!!!

Choices

I was on the bus at 7am this  14 degree Boston morning wishing I was still in  bed when I happened to look out the window.

There, alongside the bus, making his way up historic Bunker Hill - was a runner.

He was covered head to toe in black. His face, from eyebrows to chin, the only skin exposed to the freezing wind. Up the street with puffy clouds of breath trailing after him he ran.  

All I kept thinking was this guy is two steps from at best a seriosuly sprained ankle, at worst a heart attack.

What was wrong with him? Even the bus was having a hard time making it up the steep incline.

But there he was chugging along, gulping very cold air into his very red face.  Not only was it sooooo cold but there was ice everywhere with huge snowbanks on every corner - really dangerous stuff. Why hadn’t he moved his run to later in the day or canceled it altogether?

As I continued to watch him jump in and out of traffic, duck underneath icicles and hop over embankments I slowly began to realize that it was somehow, strangely - wonderful. Definitely a little nuts, but wonderful nonetheless.

He could have slept in this one morning. He could have rescheduled or skipped today altogether. But instead - he chose to run.

Chose to run up that crazy high hill, in the crazy ice cold, at the crazy crack of dawn -it was a crazy beautiful thing to see.

PedsIBD is Running in the Boston Marathon!!

 

 

We have a team of runners in the Boston Marathon this year and can’t say how appreciative we are about their commitment to children with IBD.

I’ve lived in Boston all my life, watched the Marathon many times both in person and on TV. This year, for the first time, I got to thinking about what kind of real commitment, strength, courage and perseverance it takes to run a race like the Boston Marathon.

26 miles is no joke– and Heartbreak Hill, well the name speaks for itself. Doesn’t sound like a whole lot of fun does it? Funny thing is, at almost any point along the race route as it winds through town after town, runners run by you with smiles. Runners respond to waves and cheers and signs with thumbs up and high fives. Even at the very top of Heartbreak Hill when most ordinary runners have slowed to a walk there is a feeling of sharing something wonderful, something meaningful. Runners amongst themselves, the crowds and the runners together, it’s a very special experience.

People run for all kinds of reasons.  Runners come from all over the country, all over the world. Some, the professional athletes, run to compete against the best of the best. Many run in honor or in memory of a loved one. And some, as our team of runners will, run to help others.

What a generous gesture on their part. How hopeful it makes you when strangers come together as teammates pounding over 26 miles of pavement, every step raising funds to bring us closer to better treatments and  better lives for children with IBD. Thank you, we’ll be with you every step of the way.

Sign Off

  Do you remember when TV ended at a certain time and signed off for the night? When at 1 or 2 am all channels played our National Anthem and then went to fuzz –nothing but gray static or test patterns nonstop until the next morning?

Thinking back, it was kind of nice to have that sign off - to know that when you were sleeping, so was your TV. It was like a universal downtime.

Now TV is 24/7, non-stop, something, everything, is always on anytime day or night. There is no downtime. Life runs on as we sleep - we wake up waiting to see what we missed. Sometimes I think this 24 hr TV world is very much like living with a chronic illness.

A chronic illness has no downtime. Even when not in an active flare-up, it never goes away. It doesn’t take a break. No stirring sign off of Air Force jets flying over the Rocky Mountains to strains of patriotic music in the wee hours of the morning. No few-hours break from the background noise of chronic illness.

The continuous background buzz of IBD can be so wearing. How amazing would it be to turn it off not just for a few hours but forever? That’s the promise and hope in research like the Biome Genome Project. Here’s hoping for a permanent sign-off to IBD in our near future.

Enjoy this nostalgic link TV Sign Off

Life Uncommon Video Series

 I'd like to share a short series of videos about Pediatric IBD that I recently watched. The videos are the work of the Children’s Hospital of Philadelphia. They are informative, compassionate and concise - a wonderful combination that makes them worth the watch.

The series consists of 6 short clips – each no more than a minute and a half of so. They feature children, physicians, researchers and families from the Pediatric IBD Center at Pediatric IBD Consortium founding member site Children’s Hospital of Philadelphia.

The children in the clips are bright and articulate. They speak about their disease in a way that is honest, very aware and matter-of-fact without irony or self-pity. A smiling young girl shows viewers the PICC Line in her arm and explains how it reaches the arteries of her heart.  A researcher reminds viewers that no child should have to deal with these kinds of things.

The tone of the videos is serious. The clips don't sugar-coat the realities of living with IBD but that does not mean the scenes are sad or depressing. The physicians and researchers are hopeful and forward looking and the viewer is invited to see that in spite of their struggles with IBD, these children are full of the same dreams and aspirations as any child.

This video series is a wonderful way to put real faces to Pediatric Inflammatory Bowel Disease and remind us why it’s so important to support research like that being conducted by members of the Pediatric IBD Consortium.

http://www.youtube.com/user/PedsIBD?feature=mhsn#p/a/u/0/MMAae6-iM9I

 

Back to School

 The school year has started once again, in some parts of the country earlier than others. I love the line from the movie “You’ve Got Mail” on autumn, ‘ If I had your address, I’d send you a bouquet of freshly sharpened pencils’. 

The first day of school is a day for new school clothes, new backpacks- I had a Scooby-Doo lunchbox one year that I could not wait to use – a time of excitement and anticipation. But what if you’re a child with IBD? Back-to-school excitement and anticipation can also carry with them a measure of IBD-related anxiety and stress.

I’ve had parents share that, before starting at a new school, they’ve taken their child in to scope out where the bathrooms are in relation to classrooms. IBD can make knowing where the bathrooms as important as your locker combination.

But many parents do not know that there are accommodations available for children with IBD. Did you know that children with IBD are entitled to an Emergency Access Bathroom Pass? That means they do not have to wait to get the teacher’s attention or wait to be allowed to leave the classroom if they have to go right away. Such a simple thing can make a huge difference and most parents and children with IBD have no idea that such a thing as an Emergency Access Bathroom Pass even exists.

The thought of having to use a public bathroom can also be a subject of stress for children with IBD. Did you know that you can request access to a private bathroom, usually in the nurse’s office or even in the teacher’s lounge? Knowing that options are available is a great way to minimize the embarrassment of, forgive the frankness but, explosive diarrhea.

For lots more on what additional accommodations are available and other important information about school issues including medications at school, check out the great resources on this subject at http://www.pedsibd.org/parents/livingSchool.html

 Know your options and minimize IBD related anxiety – here’s to a great school year!

Where there's a Will, there's a way

I shop at our neighborhood Whole Foods Market probably once a week. Every so often, I bump into part-time employee/full time student Will.

Will is very tall (I am not) and has reached many a high shelf for me over the last couple of years. He is invariably pleasant and very helpful. We’ve chatted about all sorts of things – the best frozen raviolis, if Greek yogurt should come in 0% fat, dogs treats for training. Will is knowledgeable, intuitive and is always up for an adventure like the time we went on a storewide hunt for Moroccan curry paste.

So why am I telling you about Will? Thing is, I found out something the other day that took me quite by surprise – Will has Crohn’s disease. He was diagnosed at 14 years old. He suffers from flare-ups and stomach pain, stays away from nuts and popcorn, manages his IBD with a cocktail of medications, has tired days and not so tired ones.

Why, I wondered, was I surprised? Do I unconsciously think that children with this disease can’t grow up to be intelligent, thoughtful, engaging, productive adults? I admit that, thinking about the myriad of struggles children with IBD face, I do wonder how a child with IBD can come to live a full life alongside their disease. But time and again, I have been amazed by the courage and determination shown by children living with this often very serious illness. They play sports, do well in school, volunteer, go on semesters abroad. Maybe having to face very serious realities well before their peers helps them to learn the life lesson that where there’s a will there’s a way. Thanks Will, for reminding me of the wonderful adults kids with IBD can grow to be.