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…

******

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

That’s When Life Called

Paging Evelyn,” I heard over the loudspeaker. “Paging Evelyn: Your life is calling.

I don’t mean I literally received this message over a loudspeaker. It was more like one of those messages the universe likes to send us now and then when we’re busy making other plans.

It was 2010 and I was attending a 2-day Mastermind group retreat in southern California with ten other women entrepreneurs – all of whom, like me, were chomping at the bit to bust loose in their prospective businesses.

I had planned to use my time in the “hot seat ” as we coaches like to call it, coming up with definitive ways to increase sales in the remaining months of 2010, and putting together a detailed plan to make 2011 a breakout year.

That’s when life called.

For the past 4-1/2 years I’d been dealing with a chronic and incurable health condition that I thought of as both a curse and a blessing.

I’d be lying if I said that living with unrelenting, debilitating pain was a walk in the park, and the fact that it took nearly two years, and the removal of a major organ (the WRONG organ, by the way) before I was diagnosed still raises my blood pressure several points when I think about it. But I really do try my best to walk the talk when it comes to how I choose to deal with what life places squarely in my lap.

So I thought I was okay with the concessions I had to make one by one, year after year, as the disease progressed and efforts to manage the pain and other symptoms provided only very limited relief.

I gave up rigorous hiking and climbing and went to walking instead.

I gave up routine traveling and settled for short, intermittent trips to places I knew had decent hospitals instead of the exotic and out-of-the-way locales I preferred.

I got used to living on a very restricted diet and dealing with increased pain when I ate more than a gerbel-sized amount of food.

The one place I hadn’t made concessions, however, was in my role as an entrepreneur.

True, becoming ill forced me to reasses the job I was in at the time and helped me to clarify that what I really wanted was to create and grow a business of my own, but I didn’t see that as a concession – it was more an insight into what I was meant to be doing with my life, and in that respect, it was a gift and a blessing.

Since opening my own business in 2009, I learned how to navigate my illness in the space of my work so that I could be the most productive on the days I felt the strongest, and allow myself some down time when I was going through a particularly bad patch.

What I didn’t want to acknowledge, however, was that those “bad patches” were becoming more frequent, and that way down deep inside I was afraid I wasn’t putting in the 110% needed to be successful – both financially and in terms of the value I provided to my clients.

When life called the morning before I was scheduled to present my business plans to the group, it came in over my cell phone where my gastroenterologist was telling me that the latest imaging test had shown atrophy in the tail of my pancreas, and with the other symptoms I was having, we needed to talk  about removing my pancreas and a possible transplant – sooner, rather than later.

Flash forward to the next afternoon and there I was standing at the head of the conference table passing out copies of my plan and realizing as I did so that I was standing in quicksand; that this plan wasn’t going to work.

At least not now.

This wasn’t going to be the breakout year when I exceeded my wildest expectations. This was going to be the year when I put together a plan that enabled my business to continue with less of me physically present while I focused on getting healthier; while I focused on healing.

In that moment, I expected to feel devastated; to feel frightened, and depressed. I felt all those things and more, but what I hadn’t expected to feel was gratitude.

Gratitude for having wonderful, compassionate, savvy women in my life who were offering up their love and support, and helping me to craft a business plan that would keep my business growing, not just limping along.

The rest would have to wait. And that was okay, because that was, well – life!

Whether solo entrepreneurs or executives in companies we don’t own, women with a great deal of responsibility that’s dependent upon our showing up every day often put our health and well-being on the back burner.

We limp along.

We hang on by our manicured fingernails and busy ourselves making other plans when suddenly life has the audacity to show up.

For some it may be a health crisis; for others it may be a financial or marital crisis.

Whatever haute couture it chooses to wear the day it arrives, we have the ability to accessorize it differently. It requires total honesty, respect and compassion, but it doesn’t require that we do it alone.

In my case, I was blessed that my mastermind group pals shared these qualities and more, and that I didn’t have to navigate my revised business world alone.

 

 

 

We’re All Healing From Something

We’re All Healing From Something

It’s been twenty years

since I saw his chest rise,

then fall for the last time.

The room became so still

for just a few moments

it was as though

the entire world had stopped breathing.

 

It’s been four-and-a-half years

since I moved to an island

where those insidious machines don’t exist.

Twenty six hundred miles separates me

from the uncontrollable urge to play games

where no one ever really wins

and where everyone holds their breath for a potential payout.

 

It’s been three months

since I received the words,

“I’m sorry” in an early morning text.

I had no idea they meant goodbye

and would take my breath away

when I found out on Facebook the next day

he’d killed himself the day before.

 

It’s been a week

since my friend came precariously close

to crossing over.

Her lungs have furiously fought for breath

for most of her life

and today, as she lays in the hospital healing,

I Thank God she’s still here.

 

A beloved’s death.

A dangerous addiction.

A broken heart.

A life-threatening emergency.

The list goes on.

An illness.

Chronic pain.

A job lost.

A bad decision.

Failure.

Abandonment.

Anger.

Betrayal.

An old wound.

A new scar.

We’re all healing from something

and we all breathe the same air.

 

photo and poem by Lila Danielle liladanielle.com