No Child Should Have to Hurt Like This

One of the hardest things about the past 11 years battling chronic pancreatitis – harder than the gut wrenching pain, the nausea, the inability to eat without setting off a chain reaction of symptoms – is the loneliness. Even surrounded by family and friends who love me, and who have been there for me over and over again, I often feel alone.

Chronic illness does that to you because much of what goes on when you’re sick happens internally. And I’ve gotten very good at keeping a lot of that hidden. I don’t want the world to see me only as this “sick” woman. I don’t want people to give up on me, and so I put on a face to the world that is often far from the woman I feel. 

Now imagine being a child. Imagine experiencing all these horrible symptoms from a disease that has no cure, and trying to understand why your body is failing.

The loneliest people I see are those whose child (or children) are battling pancreatic disease. Their faces reach me like a beacon of despair, their pain hits me squarely in my heart.

There are few things more difficult than taking care of a chronically sick child. A child who is looking to you for the answers. That aching loneliness becomes a part of you.

Which is why this year I’m raising funds for the National Pancreas Foundation in honor of children with pancreatic disease and The Pancreas Care Center at Cincinnati Children’s Hospital Medical Center.

The National Pancreas Foundation (NPF) provides hope for those suffering from pancreatitis and pancreatic cancer through funding cutting edge research, advocating for new and better therapies, and providing support and education for patients, caregivers, and health care professionals.

Founded in 1997, the National Pancreas Foundation is the only organization dedicated to a cure for all diseases of the pancreas.

The Cincinnati Children’s Pancreas Care Center is one of a handful of centers in the United States dedicated to caring for children with pancreatic diseases. Their multidisciplinary team treats patients from around the world, taking a centralized approach to provide diagnosis and effective therapies, including pain management.

In addition, Cincinnati Children’s is one of only a few hospitals in the country offering total pancreatectomy and islet auto-transplantation (TPIAT) for children with debilitating chronic pancreatitis.

According to their website: “Patients come to the center from across the country and around the world to receive expert diagnosis and advanced care for acute, recurrent and chronic pancreatitis, as well as pancreatic tumors, pancreatic insufficiency and pancreatic birth defects.”

The center works closely with the National Pancreas Foundation and is part of the #4 ranked GI Division in the nation by U.S. News & World Report.

My goal is to match the $5000 I raised for the NPF in 2015, but to do that, I’m reaching out to my village for help.

I need you.

The kids need you.

I’m asking you to join me by clicking here to donate to my campaign. There is no amount too small. No effort insignificant. I thank you, thank you, from the bottom of my heart.

Please feel free to share this post with my gratitude.

I heart your heart! 💜💜

Life Interrupted

Evelyn Kalinosky at the end of her Mt. Kilimanjaro, Africa climb. July 2000.

As part of my mission to raise funds and awareness around pancreatic diseases, I’m sharing a story with you over the next few days. It’s a story about a life interrupted by an insidious disease, and the discovery of how deep-seeded is this thing we call “Hope.”

It’s June 2000, and that Cheshire cat grin on my face in this photo is because I just spent a week climbing Mt. Kilimanjaro, the tallest peak in Africa, rising 19,340 feet. 

Yes, I did (she says with just a trace of pride and amazement).

Many of my friends and family assumed I was in the throes of a midlife crisis, since I was 41 at the time, and had never done more than day hikes at 8,000 feet or less. For you mathematicians who are adding up the numbers in your head right now, yes, that makes me 57!

Fast forward several years and I was working as an executive with a national non-profit organization, putting in 50+ hour weeks and spending many of my days traveling.

Newly remarried, with two grown kids who had flown the nest, I shared our home with my husband, my elderly mom, 2 ginormous dogs and a 10-year old foster child.

Life was full and satisfying. And rarely dull.

But by November 2005, mysterious intense flares of stomach pain, nausea, vomiting, bloating and bowel problems began plaguing me on a regular basis.

It often reduced me to a woman lying on the floor of a public bathroom for hours at a time because my symptoms were so bad I had no other option. When you’re that sick, dignity and concern for germs are casualties to the cause.

It hurt to eat. A lot.

The pain in the upper right side of my abdomen radiated through to my back like a hot poker, sometimes wrapping around my lower back like a vise tightening to the point I thought I’d surely break in half. It was a deep, boring, blow-torch kind of pain.

I’d take a couple of bites of food and be too full to eat any more. I lost 20% of my body weight in three months, and went down four dress sizes in rapid succession. The scale hovered at 100. At 5’5″, I’m small-boned, but I didn’t look “fashionably” thin. I looked gaunt and hollow. 

It was the beginning of my journey down the rabbit hole.

Part 2 coming up tomorrow…

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Would you be a love and click here to support my fundraising efforts on behalf of kids with pancreatic disease and the National Pancreas Foundation? I’ve set a lofty goal to match the $5000 ($5057 actually) I raised in 2015, and yes, it’s personal.

Any amount you choose to contribute will make a tremendous difference in the lives of those who are suffering. It does take a village. It does take a tribe, but each of us sows the seeds of hope and can make a real and lasting impact. 

I heart your heart. Truly.


#pancreaticdisease #chronicpancreatitis #npf  #lifeinterrupted #youdontlooksick #thesekidsneedus #nationalpancreasfoundation