My story began on April 1, 2022, I had been experiencing abdominal pain earlier in the week and passed it off as severe (yet unusual) period pain. It wasn’t until I was having trouble breathing that my boyfriend said it’s time to go to the emergency room. The doctors baffled me when they told me I was in the middle of a pancreatic attack with lipase levels in the thousands (50x the normal limit). I was prescribed pain killers, referred to see an internal medicine doctor, and was sent on my way. This began my journey of managing my chronic illness.
In July 2022, I was suffering from my most severe attack yet and I spent the Fourth of July in bed on clear liquids and pain relief. My pain and inflammation had traveled to other parts of my body, specifically, my GI tract. I couldn’t eat anything without pain. At this time, I was finally investigated for my ongoing pain and underwent a EUS and colonoscopy. My results were indicative of pancreatitis, but my scan showed no specific abnormalities. I had my blood immune levels tested and a biopsy taken. This resulted in a negative diagnosis of autoimmune pancreatitis (IgG4) and this began a months-long battle on steroids which proved that my negative diagnosis would suggest otherwise. A seronegative case of autoimmune pancreatitis.
At that time, I wasn’t just struggling physically with my illness, I was struggling mentally too. I was consumed by my thoughts of this illness, what the rest of my life would be like, how I looked on the medication, and the constant battle of what food to put in my body not knowing what type of pain it would inflict.
Unless you or someone you love has a similar condition, you’ll never understand how it affects every moment of your life. I’ve had lots of thoughts and raw emotions accepting this.
From not eating at the dinner table. Skipping social events because you don’t feel like explaining what’s happening in your body. And when you do explain people saying “well you don’t look sick!”. Feeling shame when you eat a piece of candy. People just watching you eat in general. I felt like a stranger in my own body, scared and not safe. I would have shame and guilt asking to leave work to go to a doctor’s appointment. Lie to my friends and family saying I wasn’t in pain basically just because I was exhausted. Facing this has been a battle.
I never thought I’d say I am sober. Alcohol makes my condition worse and causes detrimental damage to my pancreas. So, I was forced into navigating sobriety at 26, and this alone was life altering. I thought my life would be over if I couldn’t drink. Moments of celebration or joy would never be the same without a glass of bubbly in my hand. But as I began to check off all my sober “firsts” concerts, vacations, weddings – I found that is the furthest statement from the truth. It’s such a blessing to get to wake up every day. Even better when I have a pain-free day. Things that spark me real joy became so much clearer. The thought of forever seems daunting. So, I just live this part each and every day.
There is such little awareness about pancreatitis, no effective treatment, and no cure for this misunderstood and underfunded medical condition. Coming to terms with this is something I’ll deal with over time (with the help of therapy). But I have found, healing happens when we surrender to the life unfolding before us and embrace the discomfort. So it’s time to embrace it, tell my story and find the purpose through this pain.
That’s why I decided to share my story to the National Pancreas Foundation and in doing so, I had a huge turning point in my health journey. They had shared a story with me of a patient that found out gallbladder sludge was affecting his pancreatitis. Unlike stones, sludge and crystals are not picked up on imaging. After hearing this, I requested a HIDA scan from my care team which tracks the flow of bile from your liver to your small intestine. I got a HIDA and it showed my gallbladder was functioning at 15%. I ended up getting my gallbladder out a week later. I am recovering well, determined to get seen by a specialist this year and feeling hopeful for the first time in a long time.
I am almost a year into a lifelong journey of managing this illness and I won’t ever stop being an advocate for my health.
Thank you to my friends and family and my dog Lu who has been by my side on the good and bad days.
