psoriasis

My Psoriasis Journey Video

It’s been a while since I’ve written here. Our lives took a challenging turn at the beginning of the year. My father-in-law, Donald Croup, fell and broke his elbow in late January. That set off a series of health downturns including a heart attack, a urinary tract infection, and the loss of mobility. Complications around dementia took his life on May 3rd. His memorial site on Forever Missed can be found here.

As Dad’s primary caregivers, Lori, an only child, and I took numerous flights down to Southern California from Sacramento airport. The stress of traveling that much began to wear on me. When approached by PatientPortal to be the subject of a psoriasis patient story I felt conflicted. I looked forward to any opportunity to help others who are living with psoriasis, including through various media. But the time commitment felt overwhelming given everything going on.

The Interview and Shoot

The producers told me they would set up a Zoom call to discuss if I would be a good fit for the project. I figured I could decide whether or not to do the project after asking a few questions about it. At first I thought it was a short check-in call. Then I realized about ten minutes in that this would take an hour or more. By the end of the call they enthusiastically asked me if I would participate. Caught up in the moment I responded that I would.

A few weeks later Drew, the director/producer, came to the house with a film crew. They transformed the living room into a studio where they interviewed me and took footage of the living room campsite and journals. We also went to the Homestead Trail near Lake Berryessa, about a 30 minute drive, to film the outdoor shots. The intermittent rain made climbing the muddy hill a slippery adventure.

Here is the final product posted on YouTube:

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psoriasis

FanDuel’s Portrayal of Psoriasis Just Doesn’t Get It

The “clever” Thanksgiving advertisement by FanDuel caught my attention immediately. It wasn’t because I love to watch sports or that I bet on games (I don’t). Rather, their stating of the odds of a family member mentioning their psoriasis at the family gathering felt off-putting as someone who has lived with it for most of my life.

An older women at a holiday gathering is pulling her sleeve up to show that she has a psoriasis rash on it. A graphic shows that there is a 3 to 1 chance that her showing her skin is TMI (too much information)
Screenshot of a FanDuel advertisement on November 24, 2022 taken on my IPhone.

I appreciate how the National Psoriasis Foundation (NPF) responded with this FaceBook post and debated until now whether to share my thoughts. But I feel I still need to.

As of today I hadn’t seen a response from FanDuel, but if I do I’ll amend this post. Regardless, I disagree that “everything in life is a bet,” as the commercial suggests. Thinking in these terms about others who have a serious chronic illness is insensitive and dark. Nor is it “TMI” to share about living with a chronic illness.

For much of my life I’ve fought the stigma that psoriasis is “just a rash” that is an annoyance to others.

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Living with Psoriasis, psoriasis

Introduction to the Four Seasons of Healing

At eight years old my life was turned upside down when dermatologists diagnosed me with severe psoriasis. Psoriasis is a noncontagious immune-mediated condition that inflames the skin and joints.

It became an imposing part of my life at that tender age. The personal struggle of living with psoriasis not only came from the physical discomfort of red, itchy, burning, thick, scaly lesions. Anxiety, depression, and hopelessness accompanied the physical discomfort.  

Everyone is touched by physical illness. Whether experienced personally or as a friend, family member, or caregiver, disease and illness are part of the human condition. The coronavirus pandemic started in the United States with the first confirmed case on January 20, 2020. The ensuing spread and devastation revealed just how fragile public health can be in the face of a novel pathogen.  

The personal struggle of living with psoriasis not only came from the physical discomfort of red, itchy, burning, thick, scaly lesions. Anxiety, depression, and hopelessness accompanied the physical discomfort.  

The increasing prevalence of certain chronic health conditions adds complexity and risk to medically caring for those who contract COVID-19. Indeed, those with chronic disease already bear a great burden without those complicating effects. The Centers for Disease Control and Prevention (CDC) notes on their website that “six in ten adults in the US have a chronic disease and four in ten adults have two or more.”[1] They describe the impact of chronic disease this way: 

Chronic diseases are defined broadly as conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both. Chronic diseases such as heart disease, cancer, and diabetes are the leading causes of death and disability in the United States. They are also leading drivers of the nation’s $3.8 trillion in annual health care costs.2

 While the financial costs of chronic illness to the healthcare system and individual are great, those numbers do not account for the hidden impacts of these illnesses. Chronic disease and illness often affect one’s spirituality, emotional health, relationships, employment, or even the ability to perform basic daily tasks. 

Each day since my diagnosis I have grappled with having a chronic, severe, stigmatizing skin disease. Indeed, the emotional and spiritual wounds often felt insurmountable to overcome. 

Struggles at Home and Beyond 

I applied messy treatments and sustained painful taunts in those early years living with psoriasis. I especially hated putting liquid coal tar in a petroleum base on my skin overnight. The coal tar treatment smelled like a newly paved road while it stained everything it touched. The greasy feeling on my body made sleeping difficult. To make matters worse, my older brother called me names like “tar baby.” Those hurtful words made hours of treatments each day that much more difficult to bear.  

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Mental Health, Spirituality

Working Harder at Resting

In school I became a straight “A” student after my mom gave me an earful about my grades. I received a less than stellar fourth grade report card, which my parents promptly put on the refrigerator as a badge of shame.

Then there was the dreaded parent-teacher conference. Let’s just say mom grabbed my ear while dragging me back to the car in the school parking lot afterwards. That unfortunate incident spurred me to promptly get on the achievement path.

A Type-A personality emerged in fifth grade that drove me to work tirelessly toward my goals and finish well before deadlines. Whether by carrot or by stick, my motivation to keep working served to get me through years of school and then serving the church as a minister.

Sadly, though, I get a resounding “F” for resting.

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