Tag Archives: about me

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.”

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I’m a weather geek…

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!

skywarn

Golden



She’s alone tonight,

With a bitter cup and,
She’s undone tonight,
She’s all used up,
She’s been staring down the demons,
Who’ve been screaming she’s just another so and so,
Another so and so

You are golden,
You are golden, Child

You are golden,
Don’t let go,
Don’t let go tonight

There’s a fear that burns,
Like trash inside
And you’re ashamed of the curse,
That burns your eyes

You’ve been hiding in your bedroom,
Hoping this isn’t how the story has to go
It’s not the way it goes, It’s your book now,

You’re Golden,
You are golden, Child

You are golden,
Don’t let go,
Don’t let go tonight

You’re a lonely soul,
Inlet of broken hearts
You’re far from home,
It’s a perfect place to start

So this final verse,
Is a contradiction
And the more we learn,
The less we know

We’ve been talkin’ about a feeling,
We both know inside but couldn’t find the words
I couldn’t write this verse,
I’ve seldom been so sure,
’bout anything before

Golden,
You are Golden, Child

You are Golden,
Don’t let go,
Don’t let go tonight

This world is a dead man down (Golden, you are,)
Every breath is a fading crown we wear, (Golden, Child, you are,)
Like some debilitated king, (Golden, don’t let go,)
Don’t let go tonight

Earth Spins and the moon goes round’ (Golden, you are,)
Green comes on the frozen ground, (Golden, Child, you are,)
And everything will be made new again, (Golden,)
Like freedom and spring, (Golden, Golden,)
Hey, like freedom and spring, (Golden, you are, hey,)
Like freedom and spring (Golden, Child, you are,)

~ Switchfoot

Super Woman I am not!


It was 7:51 am this morning, and I was putting the finishing touches on my makeup. My Blackberry started chirping, so I looked and saw an email from Jaidin’s babysitter Amber.

This is what it said:

This is really funny…if you have a family picture, can you let us have one? I have a wall down here where all the kids have their family pictures and I was bugging you for awhile…I know it’s hard with Jaidin going to 2 different schools and all the things you have to remember…anyways…Jaidin wanted her picture up there, so one day I took a picture of just her and she asked me if she could stand by the turtles so they could be her family. LOL. I was laughing so hard. Next time you’re downstairs, you’ll have to see on our Family Wall, I have a picture of Jaidin (really cute) standing on the stool proudly next to the turtles. LOL. If you think of it, send us a “real” family picture! (although the other kids are very jealous that Jaidin gets a picture with the turtles) Very funny girl.

Amber

She HAD been asking me to bring in a picture of our family ( um…for like the last 3 months ),but I just kept forgetting. How bad did I feel? My poor daughter having to pose with the turtles because her mommy can’t remember to take in a family picture. A few months ago, I would have really beat myself up for being a “bad mom”. In fact, I cried all the way to work one day about 6 months ago because I forgot it was Show and Tell day ( for like the 3rd week in a row) and Jaidin didn’t pack anything to show to her class. Talk about working mom condemnation!

But I’ve gotten over that. I’ve gotten over myself. I’m not Super Mom, and I’m not Super Woman. And if the worst disappointment my daughter experiences at age 4 is that I forget to take a family picture to the babysitter’s, then in actuality, I guess I’m doing pretty good. But I doubt she was even disappointed…I bet she thought her “turtle family” was pretty cool…and I think she’s pretty ingenious for thinking that one up!

So today, I was able to laugh this one off…with thoughts of a little girl with a crazy imagination, and a mom who is finally learning to give herself a break.

Not to mention…red spandex is a real fashion faux pas….

SCARED


In less than 12 short hours, I’ll be asleep on the operating table for my 14th, and hopefully LAST, surgery.

And I’m scared.

It’s a weird feeling for me. Usually I’m rather calm before these things. I’ve been under the knife enough to know what to expect. I’m practically a professional patient, and I’ve spent enough time in the hospital to be comfortable there. I know what’s expected of me before I can be discharged, and I do it. But it’s not any of these things that has me scared.
I’m scared because….get this…they may have to resight my stoma!
(go ahead and gasp in horror now…)

I realize, in the grand scheme of things, this is probably a small worry, considering all the other things that could go wrong in a surgery. But for an ostomate…well.. See, I’ve had difficult stomas in the past. And they make life a living hell. The stoma I have now is a peach! Perfect size, easy to pouch ( I NEVER have problems with pouching or leaks), in a great location on my abdomen ( low on the right side of my belly…easy to conceal), yada yada. I am terrified I am going to wake up with a retracted stoma, high on the left side of my stomach!
I feel selfish for even worrying about it. Many of my ostomy friends deal with difficult stomas and many other problems that make my given situation seem hardly something to freak about. But I’m REALLY stressed about this. I’ve been nasty all day..to Jon..to everyone. And seeing the plastic surgeon and hearing his long term outlook on the success of the hernia repair didn’t help. He was less than optimistic. So, basically, I could go through this whole ordeal and not even achieve a positive outcome…which is the whole point to doing this.
I’m trying to keep my peace, and trust in the Lord. I know that He is ultimately in control and that no matter the outcome, He works ALL things to the good of those who love Him and are called according to His purposes. I know He has not given me a spirit of fear, but of love, peace and a sound mind. And I know that if there is an obstacle to overcome in the future, He’ll provide the strength to conquer it.

Still…sometimes I wish I could shut my mind off!

Out of the Closet

Well…all of greater Cleveland has now seen my bag!

I just finished watching myself on TV Very Happy . Back in May I was invited to be a part of a medical show produced by the local NBC affiliate and sponsored by the Cleveland Clinic. It was focusing on digestive disorders and being restored to health. Here’s a blurb on the show off the Clinic’s website:

Here’s a blurb about the show from the Cleveland Clinic website:

“Most of us don’t give a second thought to the complex digestive processes that take place every time we enjoy a meal. However, for patients with a gastrointestinal disease, digestion is synonymous with frustration. Discover how three patients restore a vital function during Medical Miracles: Renewed Confidence.
Observe a local physician who undergoes minimally invasive surgery to end a bout with searing abdominal pain; watch a revolutionary, outpatient procedure to heal a patient’s pre-cancerous esophagus; and share in the bittersweet joy ostomy patients experience when they learn to adjust to life with a permanent stoma.”

FYI…I’m the ostomy patient experiencing “bittersweet joy” as I learn to adjust to life with a stoma. LOL…kinda cheesy,but whatever..

So anyhow, we just saw the show, and it turned out pretty good. I was a bit terrified all day, because I hadn’t seen the finished product . While filming, they did get some shots of my belly, bag and all, and it really hit home this morning that in a few hours, the whole Cleveland metropolitan area would get a gander at my goods. But not to worry…it was edited very tastefully. No head on shots of the pouch, just some shots from over my shoulder as the nurse was examining me. No biggie! I’m really proud of the producer of the show. He made sure that ostomies were described simply and correctly, and I think this piece of media will (has) do alot to educate the public that ostomy surgery is not the end of life, but really an opportunity for a new beginning. At least it was for me, and the others in the program.

I have never been one to hide the fact that I have a stoma. All my friends know about it, and I talk about it freely to strangers too. But I guess now I’m officially “out of the closet” considering it has been broadcast city wide. Confused Hmmm….

In hopes of capturing my thoughts…

I’ve created this blog as a place for me to come and be forthright and honest about what’s really on my mind.

A therapy of sorts…