Posts tagged ‘CCFA’
Purple Challenge Day 3 Photos!
Today is Day 3 of the Purple Challenge and folks are still going strong! I am so happy to see so many people not only in the U.S. but also internationally participating in the challenge.
Here are today’s photos- same drill as yesterday- I will continue updating as more photos come in.
I’m rocking purple pants at work today!
Purple Challenge Day 2 Photos!
The photos keep coming in and I cannot express how excited I am that so many people are participating in the challenge!
That being said, here are some of today’s pictures. I’ll update throughout the day as more come in.
I’m rocking a purple hat today
ABC’s of Crohn’s Disease & UC: “C”
Sorry for the lapse in posting- we hit Jewish holiday season and then I got swamped at work. But I am back with the next in my ABC series- the letter C! I am excited to do this one because I came up with a lot of things that go with the letter and the two diseases.
Jennifer Jaff, Patient Advocate, Passes Away
I am a little late in posting but last week, a great advocate for chronically ill patients passed away from complications with her Crohn’s Disease. Jennifer Jaff, 55, was executive director of Advocacy for Patients. She was first diagnosed with Crohn’s when she was 19. She had eight operations to treat her disease and during one 12-year-period gained 120 pounds while on steroids.
#13 for the Restroom Access Act!
Today, Massachusetts became the 13th state to sign the Restroom Access Act into law. Big victory for IBD-ers.
“This bill will provide peace of mind to people suffering from IBD, who will be able to shop without fear of a publicly embarrassing situation,” said Rep. Louis Kafka (D-Stoughton).Kafka sponsored the bill in the House and led an eight-year effort to get it enacted. He introduced the legislation at the request of a constituent, Canton attorney Jonathan Rutley, who drafted the measure for his 17-year-old daughter and ulcerative colitis patient, Catherine (Catie).
For those who are not familiar with it, the Restroom Access Act (also known as Ally’s Law) requires retail establishments that do not have a public restroom to allow people with IBD, IBS, other chronic conditions, and pregnant women access to employee restrooms. As you all know, this is very important for IBD-ers. The last thing you need is to be out somewhere that has no public restroom and be denied access and have an accident.
Turning lemons into lemonade
I grew up turning everything into a joke.
For example, when my mom was diagnosed with cancer in 2006 and lost her hair, we bought her a Du-rag and tried to get her to wear a Bob Ross Afro wig.
It’s no surprise then that Dan and I try to take on Crohn’s with a light heart and lots of jokes. It’s definitely hard at times to find the humor in our situation when there is so much bad (hospitals, medication, medical bills, etc.) but we do our best.
The three times Dan has been hospitalized, I have taken photos to chronicle the experiences. While it might seem a bit strange, it helps us to keep our moods up. We also make a lot of puns related to poop and the other things that go hand in hand with Crohn’s Disease and Ulcerative Colitis.
For the last three years, we’ve participated in CCFA’s Take Steps Be Heard walk and because of our jokes, it’s only appropriate that our team name is Shits & Giggles. This past year Dan was the honored hero at our walk AND we were the first place fundraiser on the day of the walk!
If I could give one piece of advice to all those either suffering from or taking care of someone with Crohn’s and Colitis, keep your spirits up and try to laugh. It’ll help make the bad times be a little brighter.
What do you do to make Crohn’s not hurt so much?
Caring for Crohn's & UC 