The Painful Truth

In 2011, at the height of my struggle with chronic pancreatitis and before my transplant surgery, my daily pain hovered at a 6 or 7 out of 10 on the pain scale even with strong opiates like Fentanyl and Oxycodone in my system. As difficult as it was to function through the pain, without these medications I would have been bedridden and suicidal. That’s not hyperbole – it’s fact.

Even then I was beginning to see the tide turning on how chronic pain patients were being treated, and while I was fortunate to have had a primary physician dedicated to maximizing my well being, I was often subjected to judgment, dismissal and disdain by others within the medical establishment who assumed that I was a drug-seeking addict. Despite diligently following all the “rules” such as taking my meds exactly as prescribed and getting my prescriptions filled by the same doctor every time, the suspicion remained.

But – and this is a huge qualifier – I was able to get the meds I needed to bring the pain down to a level that I could live with and ensure some quality of life. For far too many chronic pain patients today this is no longer an option. In our zeal to stem the bleeding from the opioid addiction tearing at our country, we have sacrificed the wellbeing of responsible patients who rely on certain opioid medications to simply function, and who deserve some measure of dignity and humanity from a healthcare system with the power to heal or harm.

Not everyone who uses prescription opiates is addicted. Those who take opiates on a regular basis become physically dependent on the drug and will experience certain withdrawal symptoms as the drug leaves their system. That is not the same as addiction. There are many non-addictive medications that pose the same risk for withdrawal if stopped suddenly – but doctors wouldn’t dream of putting a patient through such unnecessarily inhumane treatment in these instances. They would weigh the risk/benefit to the patient and if appropriate, titrate them slowly off the medication to lessen their discomfort.

After my transplant surgery, my pain was no longer crippling and I no longer needed high levels of narcotics. It took close to a year (after 7 long years of daily use) to titrate completely off both the Fentanyl and Oxycodone. Not because I was addicted, but because my doctor rightly understood the need for a gradual reduction to allow my body to adjust to increasingly lower levels in my system. It was not traumatic. It was not reckless. It was humane. And it was the kind of health care I deserved as a patient.

I am a huge fan of Dr. Lynn Webster, the author of the book The Painful Truth, and an expert in pain management who advocates on behalf of chronic pain patients. There IS a better way, as this article by two of his medical colleagues point out, and the time is now to course correct. Losing chronic pain patients to suicide or allowing them to suffer needlessly is not acceptable friendly fire. We can and must do better.

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.

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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 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

 

Life Interrupted Part 2: Down the Rabbit Hole

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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 strength.

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.

Hope.

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.

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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?

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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

Navigating Life With a Chronic Illness (or Two)

After six years of being seriously ill, in early 2011, I spent three months offline and out of my office recovering from extensive surgery. Truth be told, it was life-saving, life-changing surgery. And that made it non-negotiable.

Non-negotiable was often the only way self-care got done. I didn’t have the best track record for self-care, or for stopping to smell the proverbial flowers. Like many entrepreneurs, who have too much to do and too many people depending on them, given a choice I’d run the engine until the service light came on.

But becoming chronically ill forced me to acknowledge that, despite having a business, managing my health had become my full time job.

I had to let go of the belief that I wasn’t working hard enough or that it was somehow my fault that my business wasn’t more successful. I was viewing my life through an old lens and it became imperative for me to reframe how I was choosing to see things.

When it comes to living with chronic illness and pain, life can be hard. We need inspiration to soften that hardness, but we also need space and freedom to be vulnerable about what is hard.

There is definitely a connection between our thoughts and how that affects our bodies because when we look at the whole of being human, we are after all, energy.

And that’s where how we deal with both the positive and negative experiences life brings to us comes in to play so profoundly.

But, it’s never about blame — blame is as dangerous and useless as guilt. There is no fault. Only discovery, centering, challenging beliefs and modifying our focus.

I’ve seen truly amazing people who’ve risen above what others can only imagine with a sense of grace, belief and always, hope. Maintaining equilibrium in the face of a life that ebbs and flows is so much better than telling people if they will it hard enough, or follow these three steps, it will come to be.

How you work with and around your problems defines you as a person. Not what happens to you, but how you choose to deal with it.

I used to think that meant being stoic and positive all the time. Now I realize that to do this is only allowing myself to be partly human. In order to be fully human, I need to experience both the positive and negative feelings that come with any experience.

Not wallow in these negative experiences, but simply allow them the space to “be.”

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How many of you who are dealing with chronic illness and/or chronic pain are running a business at the same time?

What are your biggest challenges – from yourself and the world around you?

What do you wish people knew about what your life is like on a day-to-day basis?

Please share your thoughts in the comments section and let’s get a conversation going.

 

 

Like a Phoenix Rising (Again)

I’m sitting in the waiting room at my doctor’s office, something that’s become more and more a part of my routine than I’d like to admit.

Most days I genuinely feel I’m on a Shero’s journey and I’m grateful to be alive, despite the numerous health challenges that have plagued me for the past twelve years.

Most days I go about the doctor visits, hospital admissions, tests, blood draws, and I.V. infusions as if it was just something I do, like brushing my teeth or taking a shower. Just part of life. My life anyway.

But as I sit here this morning, waiting for my name to be called, I’m feeling a weight heavy on my heart. I pick through the various adjectives, trying to lay claim to the one that fits what I’m feeling. And then I realize what it is.

It’s grief.

Bone-crushing, heart-wrenching grief.

Grief for the life I used to have before the diagnosis that changed everything.

I want to lay down my armor and sink into the sorrow. The regret.

I want to cry.

But of course I don’t. And not because there is a room full of people (many dealing with their own significant health challenges), but because I rarely give myself permission to be vulnerable. Especially around my illness. I soldier on and tell myself I could have it so much worse, or that I’ll be letting others down, or that it’s self-pitying to allow the negative feelings room to breathe.

These feelings are further complicated by the messages I received as a child.

The tape that plays for me says I only receive love and attention when I’m hurt or sick. It’s not true, of course, but it was definitely the case as a child, and throughout my life I’ve let that internalized belief impact my ability to see myself as healthy and whole. There’s been a push-pull relationship with that little girl who got attention the only way she could and the woman who knows I am worth so much more than that.

And if I’m honest, there is a residual shame that surfaces when I remember those times I sought out solace, looked for love through the lens of sickness.

I worked hard as I moved into midlife to rid myself of this worn out tape. Climbed Mount Kilimanjaro at 41 (after more than a year of intense training), cut back on my beloved Mike and Ike’s (and all sugar – much more difficult than climbing a mountain), began eating organic fruits and vegetables, enjoyed protein-rich shakes and probiotics.

I was 45 before the image I carried of my inner self finally felt congruent with that of my outer self. I thought I’d outrun my past, but life surely loves irony, and at the peak of my ‘health’ I became seriously ill.

Being sick brings up all kinds of vulnerabilities for me.

Shame.

Doubt.

Insecurity.

Self-blame.

In our current culture so much credence is placed on positive thinking and the Law of Attraction and, of course, in my work as a coach I’ve heard my fair share of well-known experts espousing the belief that we bring to our life what we really, truly want.

I’ve even been known to tout these mantras a time or two (or three). But couched within these well-meaning belief systems is a more insidious message: That if bad things happen, somehow we’ve asked for it. And that’s too close to blaming the individual for what are often experiences well beyond our control.

The reality is people get sick, bad things happen, and no amount of positive thinking or willing prosperity is going to change that. What we do have control over is how we choose to deal with what life brings to our door.

Sitting in the waiting room as I work through the grief that hit me like a tsunami, I open up to the understanding that being sick also means I’m human.

I’m human.

I’m not getting out of being in this imperfect body for the duration. And really, I wouldn’t want to.

Despite the vulnerabilities that come up. Because of the vulnerabilities that come up.

I realize it isn’t about preventing life from happening – in all its glory and pain. It isn’t about thinking of ourselves as weak or damaged when life throws us a major curve ball. It’s about what we do with what we’re given – how we choose to rise above, how we choose to be fully human.

I realize it’s no better to see the glass as ‘half full’ than it is to see it as ‘half empty.’ The reality is that it’s both. The wisdom comes in seeing both sides, and becoming empowered to deal with the whole glass effectively.

And with that understanding, I free the tears that have been aching to be released. I free myself.