So excited about this! The UOAA PSA will begin airing shortly on public television, as well as channels such as FOX News, CNN and Discovery Health.

Did you know that approximately 1.4 million people in the United States have Crohn’s disease or Ulcerative colitis?
These illnesses, collectively known as Inflammatory Bowel Disease, cause chronic inflammation of the digestive tract. Currently, there is no cure.  

Did you know that approximately 700,000 people in the United States live with an ostomy?
An ostomy is a surgically created opening in the abdomen where a portion of the digestive or urinary tract is brought through to create a stoma. An appliance, or pouch, is then worn over that opening to catch the waste that is eliminated.  

I am one of the 1.4 million and 700,000.  
I was diagnosed with Crohn’s disease at the age of 9. I spent 3 consecutive months in the hospital, only to be discharged to live a life that was no longer my own. My normal childhood gave way to a life controlled by bloody diarrhea, 30 bathroom visits a day, strict diets, and medications galore. It seemed my future would now be dictated by a debilitating disease. At age 15, after a particularly long flare up of the disease, I chose to have my entire colon removed, in hopes of bringing the disease into remission. Fourteen surgeries later, I now live with a permanent ileostomy, and finally…I am healthy!  

I spent many years feeling alone and isolated. Questions danced through my mind…
“Why me?”
“Will I ever be healthy?”
“Will life ever REALLY be worth living?”
“Why did this happen?”
“Can anything good ever come from my suffering?”  

In 2006, I joined the staff of the Crohn’s and Colitis Foundation of America, the only national organization dedicated to curing and preventing Crohn’s disease and ulcerative colitis through research, and to improving the quality of life of children and adults affected by these digestive diseases through education and support. I work in the Northeast Ohio office, and every day I receive calls from patients, young and old, asking the questions I, too, asked myself many years ago.  
My journey with Crohn’s disease and an ostomy has opened up to me a world of opportunity, both personally and professionally. Everyday I get to share my experiences, in hopes of making someone else’s journey a little bit easier. My passion is to let others know that there is indeed life after Crohn’s disease and ostomy surgery. And it’s good life!
By using my story to help others and answer their questions, my own questions of years ago have been answered.   I hope that by sharing my story, you will be compelled to help me help others by supporting me as I walk in the Take Steps for Crohn’s and Colitis Walk.
You can get involved in two ways – join my team and walk with me on June 6, 2009 at Progressive Field in Cleveland, or make a tax deductible donation to CCFA Take Steps in my name.

The walk is going to be a lot of fun – a family festival atmosphere with a DJ, food, inflatables and storytelling for the kids, company exhibits and presentations. The festivities start at 5:30pm and the 2.5 mile walk kicks off at 7pm. If you’re interested in walking with me and my friends and family on the  Me & My (Osto)Mates team, go to this link:

http://online.ccfa.org/site/TR/Walk/Chapter-NortheastOhio?px=1233871&pg=personal&fr_id=1213

If you’re unable to walk with me, please consider going to my page and making a tax-deductible donation. Over 80 cents of every dollar donated to CCFA goes directly to mission based programs and research that benefit me and patients just like me!

Thanks for your support. I hope you’ll join me on June 6 to Take Steps toward research, support, and a future free of Crohn’s and colitis!

I think I’ve up’d my Girl Geek quotient quite a bit tonight. I have become an officially trained Skywarn storm spotter.

For as long as I can remember, I’ve had a fascination with weather. I was terrified of storms as a kid, yet, they intrigued me.  As I got older, I became the kid that watched the news, waiting in anticipation for the weather report. And as I grew into adulthood, I was the girl that could watch The Weather Channel all day long.

Along the way, I’ve learned the lingo, how to differentiate between the different cloud types, and even how to identify certain features on a weather map and radar.

So imagine my delight when, about 3 weeks ago, across my Twitter feed came a tweet from WEWS News Channel 5 that the National Weather Service in Cleveland would be offering Skywarn training for amateur spotters in my area.  Of course I signed up!

So tonight at Lakeland Community College, I completed my training and received my very authoritative-looking Skywarn spotter card complete with my spotter ID on it

So..when the snow FINALLY quits falling in Cleveland, and April showers usher in May flowers – watch out thunderstorms – Kristin’s reporting for duty!

Affordable healthcare should be of particular importance to women this election season, as new insurance-company data dissected in today’s New York Times reveals that women pay much more than men of the same age for individual insurance policies providing the same coverage.

So, not only do I have Crohn’s disease AND a permanent ilesotomy working against me in the health insurance circus, but now having a uterus is equivalent to having a pre-existing condition? LOVELY…

Bishop Thomas Weeks, the ex-husband of evangelist Juanita Bynum, is starting a reality show to find a new wife. The show will be titled Holy Hook Up. Sounds classy …  *roll my eyes*

“It is extraordinary to me that you can find $700 billion to save Wall Street and the entire G8 can’t find $25 billion to save 25,000 children who die every day of preventable disease and hunger.”  – Bono

Enough said.

I’ve been blaringly absent from the blogging world the past 9 or so months. A lot has happened that frankly I’m not interested in putting on public display, so I’ve just not written anything. But I miss blogging – for me, it’s a type of journaling, and a way to chronicle important- and not so important things- that happen in my life. So I’m back. Here’s what’s going on as of late – in bullet points – because I’m just not clever enough at the moment to tie them all together with some profound theme as a skilled blogger would do

• Jaidin started kindrgarten in late August. According to her, school is “awesome”. Uh huh. I’ll ask her round about November, after she’s gotten up early every morning for 3 months and had homework 2 nights a week every week. I suspect her answer may be slightly diferent. Or maybe I’ll be pleasantly surprised….
• I’m officially a Spa Diva. In June I joined a company called BeautiControl as a consultant. I’d been to a few of their spas, and was looking for a part time job that would allow me to work a flexible  schedule, and BeautiControl kind of fell in my lap. So glad it did! I’m loving every aspect of it – and I’m making $$$. I’m not into shameless self promotion, so I’ll shut up now, but if you’re interested in having a mobile spa in the comfort of your own home, I’m your girl. Give me a call
• Spent last weekend in the hospital, or “Big House” as I affectionately call it. Damn peristomal hernia! Always causing blockages. I see my surgeon on Monday to see when we may be able to fit surgery # 15 into my busy schedule. I’m so frustrated with my body right now. And on top of it all, I caught a friggin’ cold while in the hospital (damn nosocomial infections!), so the percocet I’m taking for abdominal pain is doubling as analgesic for my sore throat. Whoa is me…
• I’m really sick of all the mudslinging going on with the presidential campaign. We’ve become a nation of partisanship, division and powerlessness of the present. In remembering 9/11/2001 today, I long for the day when we are no longer conservative America or liberal America, but are The United States of America.
• Found this wonderfully awesome ostomy blogger today. Go check out her website and read her blog. She’s candid, fun, and she offers some great ostomy lifestyle tips.
• Started reading The Shack about a week ago. This book blows so many ridiculous theological views of God out of the water – I’m loving it.  As the back cover says “In a world where religion seems to grow increasingly irrelevant The Shack wrestles with the timeless question, ‘Where is God in a world so filled with unspeakable pain?’ “. Anyone else read The Shack? What did you think?
• I follow the blogs of  friends of a friend who are in the process of adopting two kids from Haiti.  The entire country of Haiti has been devastated by the recent tropical storms and hurricanes there, and the rescue center where these kids are staying is in dire need of help. Please go read Jamie and Aaron’s blog and search your heart as to whether you can help Real Hope for Haiti in any way.

That’s it for now. What’s new in your world? Send me some tidbits…I’d love to hear about what’s going on.

As someone who has lived with an “invisible” chronic illness for over 23 years, I found the below organization and event a welcome addition to my own circle of support and advocacy. I’ve often said of my Crohn’s disease that “I wish it was somehow visible”, so that others might understand and “get it”. I can’t tell you how many times I’ve heard over the past 23 years “But you don’t LOOK sick”.

Living with an invisible illness can cause heartache and bitterness when one feels no one understands the significance of the illness. Invisible Illness Week provides that validation that people with invisible diseases often seek.
San Diego, CA — (SBWIRE) — 08/27/2008 — While we assume that most people are generally healthy, you may be surprised to find out that an alarming nearly 1 in 2 people in the United States live with a chronic illness. So why is it that most of us don’t even know when a friend or co-worker is dealing with diabetes, heart disease, lupus, or chronic fatigue syndrome? Because, according to the U.S. Census, about 96% of people have invisible illnesses.

National Invisible Chronic Illness Awareness Week is being held this year, September 8-14, 2008. It’s a secular event sponsored by Rest Ministries, the largest Christian organization that serves the chronically ill. Visit the invisible illness awareness campaign’s web site at www.invisibleillnessblog.org . You can be encouraged through dozens of articles, including daily guest bloggers, find ideas to get involved in the outreach, and goodies to help promote awareness, from silicone bracelets to brochures. Tired of those looks when you park in a handicapped spot? Be sure to pick up a license plate or bumper sticker.

The focal point of the awareness campaign is September 8-12 (M-F) during which 20 telephone seminars will be held on a variety of topics and are open to anyone. Topics may also be of interest to those with loved-ones who have an illness. Some seminars include:

- Assess Yourself: Find the Job You Desire and Can Do Despite Illness Limitations

- The Civil Rights of Patients with Invisible Chronic Illnesses

- Overcoming Self-Defeating Behaviors

- Secrets of Paying for Medical Care

- How to Get Paid to Blog

- After the Diagnosis: The Journey Beyond

The theme this year is “Hope Can Grow From The Soil of Illness.”

Lisa Copen, 39, began National Invisible Chronic Illness Awareness Week in 2002 as she continuously witnessed hundreds of people emotionally hurting just because they felt as though no one “got it.” Lisa has lived with rheumatoid arthritis and fibromyalgia for fifteen years and understands how validating it can be to just have one friend who you don’t have to explain everything to.

“Though there are hundreds of illnesses represented, and large differences in symptoms and pain levels, none of that matters more than feeling like someone understands you. When our best friends and family members are skeptical about our disease, it can be that last straw that sets us off into a spiraling depression.”

She says, “We plan to unite the millions of people who live with chronic pain and illness by offering an oasis of hope and understanding, as well as helpful information and practical tools to live the best life possible.”

Through the guest bloggers of Invisible Illness Week, to 20 seminars that supply tools to ensure that one is cared for–both body and soul–National Invisible Chronic Illness Awareness Week is succeeding in meeting that goal.

Find out more information and receive daily updates at http://www.invisibleillnessblog.org

Thought all my Crohnies may be interested in this link:

http://www.cleveland.com/health/plaindealer/index.ssf?/base/news/1216369870243350.xml&coll=2

Yep, that’s right…I was on TV this morning. You can view the clip Here

It was a great interview, a wonderful way to get the word out about Take Steps  and raise awareness about Crohn’s and colitis.

However… hello?!? Is that really my face?? Please tell me those aren’t my chipmunk cheeks…

*sigh*  At least it was for a good cause ;^)