By late fall 2005, my physical symptoms began to dramatically affect my day-to-day life. I couldn’t continue to tell myself it was just stress or that I was “run down.” I began my quest in earnest to discover what was happening inside my body.
It’s also when I discovered that even doctors don’t have all the answers.
And so, I began my journey down the rabbit hole.
The next two years were spent going from specialist to specialist, each of whom ruled out whatever common disease they thought I was suffering from. The usual suspects: IBS, diverticulitis, gall stones, ulcer, stress.
A few doctors listened, but most were trying to fit my symptoms into a neat little box, and when that didn’t give them the answer they expected, I was suddenly off their radar.
According to a friend of mine who is a cardiologist, doctors are trained that when you hear hoof beats, think horses, not zebras. The doctors I’d seen were looking for a horse, but maybe, just maybe, I was a zebra.
Climbing Mt. Kilimanjaro was a walk in the park compared to the mountain I was scaling now.
I felt like I was free falling: in unrelenting pain, scared, forsaken, defeated. As time went on though, I got mad. There’s nothing like a little righteous anger to help you garner some motivation.
After the removal of my gall bladder in the spring of 2007, and things became worse, I’d had enough. I went online and researched the top Gastroenterology hospitals in the U.S. The email I drafted explaining my symptoms, tests I’d had done and their results, and my recent surgery, was sent to the department heads of five of them.
While my own local doctors wouldn’t return a phone call, four of the five department heads replied to my email within 48 hours offering to help.
Slowly, ever so slowly, I was making my way out of the rabbit hole.
Johns Hopkins was the closest of the five top hospitals to where I lived, and in the early summer of 2007 I made the first of many 3-hour drives to see if they could help me find an answer.
They did, but it wasn’t the answer I wanted to hear, since it meant discovering I had a progressive, incurable disease. After more that two years of acute, debilitating symptoms, my disease had a name: Chronic Pancreatitis.
Between July of 2007 and 2010, I went through a half dozen endoscopic procedures, a sphincterotomy, several stent placements in my pancreatic duct which promptly occluded or migrated to who knows where in my body, an open abdominal surgery to exclude cancer, and a bilateral dissection of the nerves around my pancreas in an effort to diminish the pain.
I was taking pancreatic enzymes to help me digest food, higher doses of narcotics to try to dull the incessant pain, and eventually was being fed through a PICC line in my arm. Drip. Drip. Drip. 12 hours at a time.
My life no longer felt like my own. Who was this now 100-pound woman who had to give up her career because she was too sick to even sit behind a desk for more than a few minutes; whose hair was falling out; whose nails were weak and brittle?
And there were losses that stretched well beyond my career…
There was the loss of friends, many of whom grew tired of my “always being sick” and canceling out on plans at the last minute.
There was the loss felt within my family, who tried to understand and be supportive, but who wanted the “fun” me back. I felt the loss of intimacy with my husband, who was drifting farther and farther away.
I’d lost the ability to be spontaneous or plan for the future.
There was so much grief…
For the active woman I once was, who now spent her days lying in a fetal position, heating pad over my stomach, praying for the pain to go away.
Grief for the times I couldn’t spend playing with my grandkids. Grief for my “me-ness.”
There was so much shame and guilt…
For not pulling my weight.
For needing others to do for me what I used to do for myself.
For wanting to give up.
Hope was a slender, slender thread and I was white-knuckling my way through each day, each hour, each minute.
Even with high doses of Fentanyl and Oxycodone, my pain hovered around a 7 out of 10 on the pain scale. A really good day was a 3. But there were fewer and fewer good days, and I had begun settling for a few good hours.
Part 3 coming next…
Missed reading Part 1? You can find it 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 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
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