When a Curse Becomes a Blessing

A couple weeks ago, I was asked if I would consider being the editor for the newsletter published by our women’s ministry at church. It was a no-brainer to say yes. I enjoy writing, I’m a stickler about grammar and spelling, and I’m pretty computer proficient. Sounds like a good fit right?

Then, once I’d committed, Kristen – the director of the women’s ministry said, “One of the things I’d like to implement is an article in each newsletter that highlights one of the ladies in our church. We all see each other, week in and week out, but never really get to know things about each other that are below the surface. Since you’re putting together the newsletter, why don’t you be the first woman we feature? “.  How could I say no? So I agreed. Simple enough.

Except that I hate writing that kind of thing. Or maybe it’s not that I hate it, but really that I don’t want to sound boastful when writing about my successes and accomplishments. I don’t think I’m one to toot my own horn, and I struggle to share about all I’ve been through in my short 35 years because the glory is all God’s. When I share with anyone about where my life has come from, how it’s been changed, and why I hold the hope that I do, I never want people to think that it’s at all because I think I’m such a strong, talented person. Truth is my past (and even some moments in the present) is littered with hardships that without the love and grace of Jesus Christ, I never would have overcome.

I’ve been incredibly blessed that He’s taken what at the time seemed to be a curse, and turned it around into the greatest blessing imaginable. From my sickness and suffering, I’ve been able to find my ultimate purpose.

 

Anyway – many people have asked if I ever finished the article. I did – and here it is in it’s entirety. Maybe I’ll write my memoir one day afterall…

 

Remember your teenage years? Wanting the right hair and clothes, having a crush on that special someone – who didn’t know you existed? Recall feeling awkward and out of place…all alone? Remember trying to fit in? Now imagine that you had a chronic illness that required surgery to save your life. What if on top of all the “normal” adolescent issues, you used the bathroom through a pouch on your side, because your diseased intes­tine had to be removed. How’d you like to miss your birthday party, the big game, even prom, because you were in the hospital- AGAIN! Sounds like a bad dream, doesn’t it?

Unfortunately for Kristin Knipp, this was a reality. Diagnosed with Crohn’s disease at age 9, Kristin spent much of her childhood in the hospital. When she was 15, she had her diseased large intestine removed, leaving her with a condition called an ostomy. The ostomy is a surgically created opening in the abdomen through which doctors bring a portion of the bowel and the person then wears  a prosthetic ( called a pouch) that waste is collected in.

“My teenage years were trying, for sure. There’s a certain stigma attached to going to the bathroom ‘differently’, and when you’re a young person, that stigma seems magnified. It’s very isolating”, says Kristin. “For many years I asked ‘why me?’. I didn’t know Jesus back then, so no real answer ever came. In fact, the lack of answers, coupled with recurrent surgeries and medical trials, led to one very bitter young lady. I was mad- mad at my body, mad at my circumstances, and mad at God for allowing it. It wasn’t until I was 17 that things slowly began to fall into place.”

At 17, Kristin attended a summer camp for teens that had ostomies and other bowel and bladder diversions. For the first time, she met other kids that had experienced illness, surgery, and the same struggles she’d been facing. Finally, she didn’t feel alone. This camp, called Youth Rally, was ultimately the vehicle through which Kristin was introduced to Jesus.

“My second year as a camper, I met a young man who was also a Crohn’s patient and an ostomate. We were drawn to each other – initially because of teenage hormones and young love, but after camp ended and we returned to our respective homes, we maintained our friendship and I began to realize that we had a special relationship. Every time we talked, he offered me hope regarding whatever circumstances I was facing, and assured me after every conversation we had that he was praying for me. It wasn’t long before I realized that the thing that drew me to him most was his relationship with the Lord. In 1997, I visited him and his family in Tennesse, and it was there that I attended my first ever church service, and gave my heart to Jesus.”

It didn’t take long after welcoming Jesus into her life for Kristin to recognize how God had placed His hand on her  long before that moment, and had been weaving a tapestry that on the under side appeared messy and disheveled. But now that she could see it clearly, through spiritual eyes from God’s perspective, she began to see the answer to her “why me?” questions.

Kristin has returned to Youth Rally for the past 12 years to volunteer as a counselor and offer hope to teens facing life with an ostomy.  Volunteering with Youth Rally brought to Kristin’s attention the lack of support and resources for young people living with ostomy surgery, especially young adults, and in 2005 she founded YODAA (Young Ostomate & Diversion Alliance of America) a national network for young adults living with ostomy or diversionary surgery. Eventually the organization joined the United Ostomy Associations of America(UOAA) as an affiliated support group, and YODAA is still growing strong today.

In 2006, serving while serving UOAA as National Conference Planning Chair, Kristin was approached by the organization’s president about running for a national board of directors position. Kristin knew that it was something she was called to do.

“My life had come full circle”, she says. “At 15, receiving an ostomy had felt like a life sentence. Now, I was in a position to share my experience with an ostomy with others and let them know that it is indeed a LIFE sentence. Life is the key word. An ostomy gave me back my life, and this was my opportunity to use my experiences to change the course for others facing the same road. This was a significant answer to my WHY from so many years ago.”

 

Kristin threw her hat in the ring for the election, and was installed as the President-elect of UOAA in 2007. She served in that capacity for 3 years, and in January 2010, began her term as President of the organization.

“ While serving UOAA as president, I had the opportunity to travel the United States and abroad and use my God-given talents to work to improve the lives of ostomates around the world.  I’ve lobbied on Capitol Hill for legislation important to those living with an ostomy, I’ve been to Mexico and seen the plight of ostomates in foreign countries who have little or no access to specialized care and ostomy supplies. I’ve been honored to serve on a selection committee that extends scholarships and awards to people who’ve made a ‘great comeback’ from ostomy surgery, and have been blessed to be a spokesperson for several campaigns aimed at eliminating the stigma that is attached to ostomy surgery. God has granted me the influence to affect change and the responsibility to help others along their journey”.

Kristin now works for a company that makes specialized undergarments for people that have had ostomy surgery, and feels incredibly lucky to be able to combine her vocation with her avocation.

“Every day, I have the opportunity to minister to someone who’s in need of a little hope. It’s not traditional ministry – I don’t work at a church and I don’t have a title, but I have the love and grace of Jesus Christ in my heart, and I’m able to share it every day in the form of knowledge and encouragement to help others along their journey. My WHY has been answered, and no longer is Crohn’s disease or an ostomy a curse. It’s been my biggest blessing.”

Whether misinformed or underinformed, I’m still angry…

I had (and still have) the  most amazingly wonderful WOCN in the world (don’t argue with me – I know most of us ostomates feel that way about our “special” nurse – but Paula IS the bomb!) Let me tell you why.

Back in 1991, some 20 years ago, when I had my first of 14 surgeries, Paula was THE NURSE that changed my life. Literally EVERYTHING I knew about ostomies was due to Paula educating me. There was no internet for me to Google ostomy and get freaked out by all the images that appeared, no online dicussion board to post my questions to, and no Facebook to “connect” with other ostomates. No one told me about the UOAA. My parents had never even HEARD of an ostomy, and certainly we’d never met someone who had one. So what I knew, I learned from Paula.

She helped me find the right type of pouching system. She showed me how to clean my skin, prepare the pouch, and complete all the steps to attach the pouch correctly to my abdomen. She told me what to look for as far as excoriated skin and a fungal infection. She showed me how to empty the pouch, how to fold it up and tuck it in my underwear to keep it secure. She told me it was perfectly fine to get the pouch wet – in a shower, bath, swimming pool, hot tub, ocean or lake. She told me I could wear anything I wanted, eventually have a normal diet, and live a perfectly normal life.

I never knew the extent to which I was blessed to have her until I started volunteering in the ostomy community. Not everyone even gets a WOCN, let alone a spectacular one like Paula. Not everyone comes home from the hospital and finds their first box of ostomy supplies waiting for them on their front porch. Not everyone gets told that getting the pouch wet is ok,  and that wearing it sideways is probably going to breakdown the wafer and cause skin irritation. Not everyone knows they can wear regular clothing, go out to eat and lo and behold, still have sex.

Whether others were misinformed or underinformed, I don’t know. All I know is that through all the work I did with UOAA, and with my job at Ostomy Secrets now, EVERYDAY I hear from someone who doesn’t have the basic information needed to live with an ostomy. Even with the wealth of information and support available online, even with 300+ support groups nation-wide, even with 3 major ostomy supply manufacturers that  all offer patient education materials,  and even with hundreds of professionally-trained, certified Wound Ostomy & Continence nurses working in our hospitals and clinics, people are STILL not getting basic information that is critical to a good quality of life with an ostomy.

And it makes me angry.

 

United Ostomy Associations of America PSA

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.

Keep Peddling: Reflections on GYGIG

I did it…I survived 3 days in the wilderness of upstate NY.
(Ok..maybe it wasn’t really wilderness, but it came close enough for this city girl.)
For all you doubters out there…I went 3 days without “doing” my hair (thank goodness for pigtails), and I broke not a single nail. So And guess what…

I actually enjoyed it. Maybe not the camping part so much ( although I’ll definitely do it again), but the GYGIG ride was an amazing experience. Over 150 riders and crew…each with a unique story about how Crohn’s and Colitis has affected their life, each riding or crewing for a different personal reason, but committed to the ‘corporate’ mission of the ride.

As I watched the riders and crew each day, I was reminded of my own “journey” with IBD, and it can be likened to a bike ride. In the beginning, I was extremely focused on the end…when, where, how will it be over?

But over the years I’ve learned to not focus so much on the destination, but to appreciate the “ride” and the progress I have made. There have been hills; hospitalizations, ostomy surgery, lack of insurance, emergencies, “accidents”. “Hills” that at the time seemed insurmountable, but somehow I made it to the top. There have also been descents and valleys; depression, self destructive behavior, wondering what the future held. Determination and perseverance allowed me to keep peddling and eventually reach flat, even ground; acceptance. And all along the way, there have been rest stops and cheering stations; a WOC nurse who not only encouraged me but inspired me, my involvement with Youth Rally, working for CCFA, being elected to office with UOAA, and all of the other amazing opportunities I’ve been afforded because of my journey with IBD. But most importantly, there was the crew; the people that I met along the way who cheered me on, picked me up when I couldn’t go any further and “swept me along”, those who fixed the broken parts, those that showed me how to “ride” when I was a new cyclist in the IBD journey, those who “rode” before me and marked my way, and those who believed in my ablity to finish the course, even when I doubted.

My ride is far from over. Each day I get up, I set out along the path. Some days I am the rider…climbing hills, careening down the other side, pulling out of the valleys, and picking up speed on the stretches of even gound. And some days I’m the crew…helping a new “rider” get their bearings, sharing my story and encouraging them to “keep peddling”.
Truth be told, I’m not positive of my destination. But I’ve learned that it doesn’t so much matter- I’m on an incredibly scenic journey and I’m going to keep peddling to wherever it leads.

Here’s a quick recap of the weekend events:
Arrived in NYC on Thursday afternoon. Hooked up with Julielyn and Paul and did “touristy” things like Times Square, met Spiderman, and we visited the World Trade Center site. Checked in for the ride, attended ride meetings, then headed out on the town and met up with a sorority sister I hadn’t seen in about 12 years ( Hi, Laurie!). Then back to the hotel and bed because I had to be up at the butt crack of dawn.
Got the the starting Pier in Tribeca at 5am Friday. Made coffee, set up breakfast, helped unload gear truck and set up bike racks, etc. Opening ceremonies, riders departed. Tore down above mentioned items, helped reload gear truck, then headed upstate to camp 1. Arrive at camp, help clean dining hall (nasty) and bathroom/showers (nastier). Help unload gear truck (again), set up tents with the guidance of the Tent Fairy, got text from friend Julielyn (rider) who was in ER getting breathing treatment next to the rider (Yoni) who got hit by a deer!, passed out towels, took a much needed shower, ate dinner, attended crew meeting, chased tumbleweeding tents across the field (it was a bit windy) , got in my tent and collapsed in exhaustion. Awoke at 1am to the sound of rain. Had to pee (of course!), so walked to bathroom with flashlight in rain with one contact suctioned to my eyeball and other eye barely functional (fun times). Back to tent, wonder if I should pack up my stuff so it doesn’t get wet…should I get out rain gear in case it starts storming and I must make a run for the pavillion. Decide I am too tired to care, try to go back to sleep. Hear scary noises coming from surrounding woods and have ridiculous thoughts of Camp Crystal Lake and the Blair Witch Project.
Get up at 5 in the morning, make Gatorade and icewater for riders, pack up my stuff, help take down tents, clean up, tear down bike racks, load gear truck (again), then head to breakfast at the Elk’s club. Eat, then head upstate to Earllton. Arrive at camp 2. Unload gear truck (again!), set up canopies, tents, bike racks, snacks, Gatorade, water, yada yada. Rest a bit (nice weather this day) and check out campsite. See lots of double wides and garden gnomes.
Riders start arriving, direct them to tents, hand out towels. Eat dinner, listen to Solid Gold ( 4 men, 50+ yrs old, singing 50 Cent…classic..), hang out with riders and crew, talk, collapse in tent exhausted.
Awake at 5am, shower, eat breakfast, tear down camp, load gear truck (yet again), head upstate to Saratoga Springs and Skidmore College. Set up rider holding area, unload gear truck (for the LAST time!), await riders. Riders finish ride, I get teary-eyed several times, take lots of photos. Then closing ceremonies. I address crowd on behalf of UOAA, get teary-eyed again. Barbeque dinner, then goodbyes.
Through out all of this, the reflections from above were flowing through my mind. I just gave you the nuts and bolts of all that happended. But like the T-shirts say …

“It’s so much more than a ride”…

Chi-Town, Mom and Me, and Memorial Day

I’ve been wanting to post these pictures for a week now…but time keeps slipping by. So here’s a quick lowdown and I’ll let the pics speak for themselves.I survived my trip to Chicago. We had a good conference planning/board meeting and I feel like I have a much better handle on the “big picture” regarding the conference. I’m very detail oriented and sometimes get caught up in the little stuff and overwhelm myself. But I’m very blessed to working with an awesome group of people who are faithful to follow through on responsibilities. And they’re so kind to keep encouraging me in my new responsibilities. And…I’m very lucky to have a family and friends who are supportive of my traveling all over the map, helping us with Jaidin, etc. And…I’m very blessed to have a husband who sends me flowers while I’m out of town

The Monday after I got home from Chicago, I got to spend the evening with Jaidin at FunTime, an indoor “inflatables” funpark. The women’s ministries at our church meets once month and this month was Mom and Me night out. Jaidin had a great time, and I enjoyed spending the evening with her since I had been gone for 4 days.

Memorial Day weekend was hectic but fun. Our friends Mitch and Heather were in town visiting and we got to spend some time with them.They used to be part of RedHeart with us and Mitch played in Jon’s band, but they moved home to Lancaster, PA about 2 years ago. So good to see them…and find out they’re expecting a baby!
We also got to go to Miss Kelly’s birthday party. Miss Kelly is one of Jaidin’s preeschool teachers, and also the sister of my brother’s fiance. Fun times hanging out with all the RedHeart and church crew.
We had a fun time with family too. Sunday afternoon we spent time at Jon’s parent’s house. They were still in Maui, but Jon’s aunt Vicki was in town to stay with his grandma while mom and dad were gone. I’m so glad I finally got to meet Vicki. Then we headed to my grandparents house. My mom’s stepsister MaryLue was in town, so we went to visit with her. And we had fun teaching Jaidin to play Cornhole…the hokiest midwestern yard game ever!

We spent Memorial Day at Steve and Lindsey’s. Family cookout, t-ball, football, S’mores…what else do you need on a holiday?

Support Me as I Get My Guts in Gear

Get Your Guts in Gear is a non-profit, 501c3 charity that raises funds and awareness for organizations that support people with Crohn’s disease, ulcerative colitis, and ostomies. Their website is www.ibdride.org. June 8-10, 2007, I will be crewing the Get Your Guts in Gear bike ride in New York State.

Many of you know of my challenges over the years living with Crohn’s disease and a permanent ostomy. Please view my ride website to see why I’ve decided to crew this ride, and please consider supporting me financially. My goal is to raise $3000 to support the amazing organizations that benefit from this ride.

Thanks in advance for your support!

My ride website: www.ibdride.org/kknipp

The Big Easy

This past Sunday I headed off to New Orleans to do a site visit for a conference I am planning for 2009.
After an uneventful pair of flights (Cleveland to Charlotte, Charlotte to New Orleans) I met Ken (UOAA’s current president and my “boss”) at the airport and we cabbed it to downtown. The Sheraton is located right in the downtown area almost between the French Quarter and the Garden District. We checked in and were informed that we had been upgraded to Executive Suites. Pretty cool! However…of course they upgraded us…the rooms were comped to begin with, and they want us to throw a $50,000 conference their way. Duh! The room was great, but really, if they wanted to wow me, they should have put me in the Presidential suite with the whirlpool tub. ( I am just kidding…I’m NOT a hotel snob. I was quite appreciative of my free executive suite )
We dropped our stuff off in our rooms and then headed out to find some dinner. We ended up at this place called The Gumbo Shop. YUM! is all I have to say about that. I had a traditional Creole meal – Chicken Andouille gumbo, Chicken Espagnole with rice and garlic potatoes, and bread pudding with whiskey sauce. And of course I topped it off with an authentic New Orleans praline that I purchased on the walk home! (I bought a whole box and have been eating them since I got home. I believe I’ve found the newest form of crack! )
Back in the room, I enjoyed the view from my floor to ceiling window, chatted on the phone, answered email and proceeded to pass out. I do believe it was a Creole-induced coma
Monday morning we met with the hotel sales manager to talk business, view all the meeting space, etc. The hotel is beautiful, spacious, and has a full-service Starbucks in the lobby, which gets them my vote!
After our meeting, we consulted with the concierge about things for us to do in the area. I REALLY wanted to take a ghost and cemetary tour of the city, where they show you all the “haunted” spots, and tell stories like that of Marie Laveau ( famous voodoo priestess). But alas, we found out the tour was a 2.5 hour WALKING tour, and since yours truly only brought strappy platform sandals and high heels, we decided against the walking tour.
We did end up on a Super City bus tour that took us everywhere! We started out in downtown and toured all the neighborhoods. We even saw some of the areas decimated by Katrina. We went north to lake Ponchatrain and then came back down via the Garden District, past Tulane and Loyola. Beautiful architecture, magnolia blossoms, and Mardi Gras beads were everywhere ( St. Charles in along the parade route). The tour driver was so knowledgeable about the city, giving us history of Creoles, Cajuns, the cities wealthiest occupants, as well as famous people that have inhabited the city through the years. He talked alot about Katrina and pointed out various landmarks and places of interest along the way. I think the best part was his snippet about the cemetaries and how the plots and tombs are utilized. The tour was a 2 hour history lesson and I enjoyed every second of it!
After the tour we walked over to the famous Cafe Du Monde and had beignets and cafe au lait. WONDERFUL! We sat on their outside patio, talked about love, life and UOAA business and listened to great street musicians play and sing. It was a laid back, relaxing afternoon…and really gave me a nice opportunity to get to know Ken better.
That evening we headed down Bourbon street in search of dinner. After passing Huge A$$ Beers to Go and Big Daddy’s Topless and Bottomless, we decided that we’ll not need to plan any programming for ’09. I mean really…what else do you need for a successful conference? ( I am totally kidding, of course) We ended up in this place called Yo Mama’s for dinner. Yes, it was as hole in the wall as it sounds, but had a really cool vibe…and surprisingly enough, great food!
When we got back to the hotel, I was really tempted to go back out on my own and explore, but I knew Jon ( not to mention my mother and grandmother) would freak out if they knew I ventured out into a strange city by myself…afterdark! Oh the horrors! So I went downstairs and hung out in the lobby and at Starbucks by myself for a while. I chatted with a few nice folks in town for a disaster recovery conference, but mostly I people-watched, one of my favorite things to do. I love watching people interact, imagining the stories behind their lives, wondering about their dreams, etc. I went back upstairs at about 11pm, packed up most of my stuff and went to bed.
Tuesday morning we met with another hotel rep, had breakfast and headed to the airport. It took me all day to get home, thanks to a two hour layover in Charlotte. Jon and Jaidin picked me up at the airport and suprised me with a huge bouquet of brightly colored daisies! I love walking out of baggage claim to find two smiling faces and pretty flowers to greet me!I had a fantastic time in the Big Easy, and I think it’s pretty probable that we’ll be having a conference there in 2009. Now all I have to do is convince Ken that our next site visit should be sometime in mid-February next year. Can you say “Mardi Gras”?

Sad

http://news.yahoo.com/s/ap/20070327/ap_on_go_pr_wh/tony_snow_cancer_12

I must admit, I shed a few tears today when I read this story. I know you’re asking “what kind of a dork cries over Tony Snow?” Me, apparently. But let me explain why…

I’m a big Tony Snow fan. I’ve watched him on TV and listened to him on the radio for years. And I’ve always kind of had a ‘married lady’ crush on him . And finally…dream come true…I got to meet him last month.
As president-elect of the United Ostomy Associations of America, I was privileged to be invited to attend the Great Comebacks Awards ceremony in Washington, D.C. ( www.greatcomebacks.com ) Great Comebacks is sponsored by Convatec and The Crohn’s and Colitis Foundation of America and is a national award honoring someone who’s made a Great Comeback from ostomy surgery. ( Many of my friends are current or past honorees!) It was a fun trip…I got to lobby on Capitol Hill and meet some CCFA and ConvaTec brass, and the past and present honorees got a tour of the White House and an impromtu meeting with George W. (Marvin, the younger Bush brother, has ulcerative colitis and an ileostomy) But one of the highlights of the week for me was meeting Tony Snow.

Many people know of Tony’s battle with colon cancer a few years ago. But most people don’t know that he battled ulcerative colitis for years before that, and his IBD eventually led to his colon cancer. He even had an ileostomy for 9 months while recovering from his colon resection to treat the cancer.
Tony was this year’s Great Comebacks honorary award recipient. During the reception before the awards dinner, I had the opportunity to meet and talk with Tony. He was so personable and welcoming. He asked me all about my involvement with UOAA and CCFA. I, of course, was tongue tied. But we got to shake hands and take a picture together…it was a ‘pinch me’ moment!

While accepting his award, he talked about his faith and all the people who had helped him in his journey to make a “comeback”. His wife and 3 young kids were in the audience, beaming. And at that moment, to me, he was just Tony…another survivor, a fighter, a conqueror. And I had all the more respect for him.

I watched with interest last week as news circulated that he was having surgery to investigate a ‘mass’ in his abdomen. I prayed that it wasn’t cancer, for so many reasons. I have dear friends that are colon cancer survivors. I’m sure everytime they hear of another survivor’s recoccurence, it’s a blow to their spirit. I hurt for Tony’s family and friends and the fear they must have been experiencing. And I hurt for Tony, not the celebrity, but the man who had fought so hard ( like so many of the people I know) to remain in the game of life.

So when I read this morning that it was indeed cancer, I cried. I can’t totally explain why…other than that my heart hurt..for my friends who are survivors, for Tony’s family, and for the man who was once an icon to me but is now so much more than that.

Colondar

…not to be confused with colander! LOL

This is amazing and you need to check it out! It’s a project of The Colon Club, and it’s near to my heart because of the risk of colon cancer associated with having Crohn’s disease and Ulcerative Colitis.

All the models in the calendar are colon cancer survivors who were diagnosed with the disease before age 50. Colon cancer isn’t just for old folks, people!! A few of these models even have ostomies…and my friend Bob just happens to be Mr. December!

Now…go buy one and support this worthy cause!