Life Interrupted Part 3: A New Normal

As my disease progressed and my symptoms worsened, I became a “frequent flyer” at the ER – the term some ER staff use to refer to patients they believe are drug seekers.

The humiliation and lack of compassion I often encountered during those Emergency Room visits meant I would do anything to keep from going there unless the pain became unbearable.

My breaking point came at a family friend’s viewing. I vividly remember standing in front of his casket, looking down at this 82-year old man who had passed away, and wishing with all my heart it was me in there instead of him.

It was a watershed moment. That tenuous thread that held me to life was poised to break, and I was so very close to letting it take me down, take me away.

I don’t know what pulled me back from the brink of suicide. Certainly my love for my family and friends was a primary reason. But here’s the thing many people don’t understand: those of us who’ve walked that razor’s edge feel an overwhelming despair that we’re causing those we love to suffer. That we’re a burden.

Because sometimes we are.

In that moment I chose to get counseling before it was too late, because somewhere, deep inside me there remained the faintest hope.

Hope. Hope. A tiny, beautiful seed…There’s an old Mexican proverb that says: “They tried to bury us, but they didn’t know we were seeds.” 

I clung to that hope and a chance for a better quality of life when, in November 2011 – six years since my life was dramatically interrupted – I went for a consultation at the University of Cincinnati Medical Center with a brilliant, well-respected and humble surgeon by the name of Dr. Syed Ahmad.

He offered me that chance, with no false promises. He was clear about the fact that the total pancreatectomy with islet cell autotransplantation surgery was meant to reduce or eliminate my pain.

It was not a cure.

He was clear that I could be trading one disease for another called diabetes.

Door #1 – stay the course.

Door #2 – take a chance.

I chose the door out of pain, knowing I might be diabetic, knowing it meant a 9-10 hour complex surgery where they would remove my pancreas, spleen, duodenum, part of my stomach and restructure my entire digestive tract. Knowing it meant days in the ICU, weeks in the hospital, and a full year of recovery with no guarantee it would be successful.

I chose Door #2.

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December 1, 2011 following my 10-hour surgery.

December 1, 2011 was the beginning of my “new” life. When I came out from the fog of anesthesia, despite the epidural, despite the pain medication, I knew something was different.

That deep, gnawing, blow torch, intractable pain was gone. It was gone.

They had me sitting up the next day.

They had me walking.

I walked every inch of the 9th floor of UC Hospital over and over and over again, dragging along my cumbersome IV pole as company. 21 laps around equaled a mile. It took me more than a week to manage that.

I had to learn how to eat again. Much of my digestive system was damaged, removed or surgically altered. “Food” through an IV caused me to vomit immediately and often.

Stop. Start. Stop. Start.

Until finally, I had my first real taste of food in months. And it stayed where it was supposed to stay. And I rejoiced in the magnitude of a body so resilient, so strong.

I left the hospital and made it home two days before Christmas.

I’d spent my 53rd birthday hooked up to IVs, monitors, and enough wires to make a giant bowl of spaghetti, and now I was home celebrating the holidays with my family. Best birthday present ever!

Seven months after my transplant surgery I was able to travel to Zurich for a month to be there for the birth of my daughter’s second child. Grandchild #4. Alice Mabel.

I was elated. I was scared. I was grateful. I was exhausted. But I was there.

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Me in a field in Zurich, Switzerland.

It was the beginning of living a new normal – a life somewhere between the once healthy me and the woman who had physically hit rock bottom.

Now, nearly five years later, I’m totally off Fentanyl and Oxycodone. It took a year to wean off these powerful narcotics – and no, I didn’t have to go to rehab to do it. Without the excruciating pain, I just didn’t need them anymore.

I still have pain, but for the most part it’s manageable, and related more to the damage the disease did prior to the surgery. I still have digestive issues and difficulty absorbing nutrients, which means I’ll be taking pancreatic enzymes and managing my symptoms for the rest of my life.

I am an insulin dependent diabetic, but my sugar levels are fairly well controlled – something that wouldn’t be possible without the islet cell transplant.

My motility issues due in part to prior damage and the restructuring of my digestive tract, means I have days when I can’t do much more than hug a heating pad.

My husband ended our marriage in 2012, not even a year after the surgery, and I’ve moved to a new state to be closer to my transplant team.

But I’ve gained so much more than I’ve lost, and there’s real beauty in that – in hitting the wall and deciding to take just one more step. And another. And another.

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A new normal

Am I the same as I was before the surgery? Before chronic pancreatitis took hold of my body?

No. I’m not.

I’m me, but different.

It’s a new normal I’m still learning to navigate, but it’s one filled with grace, resilience, and extreme gratitude.

Because, if nothing else, this disease has taught me that I am a Warrior. Those of us with chronic illness and chronic pain are all Warriors.

Missed reading Part 1? You can find it here. Part 2 is here.

******

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 this is so personal for me. 

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

 

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