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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Family, psoriasis

How Our Couple Story Started by Sharing Health Stories

Today Lori and I are celebrating our 27th wedding anniversary. We hoped to go to Hawaii for our 25th, but then the pandemic changed our travel plans. A couple of years later we are still waiting to take that trip. Maybe it will become a 30th anniversary trip, but I hope it won’t be that long before we go.

We first me at the end of 1992 when I was looking for a co-leader for a Bible study I led off-campus with InterVarsity Christian Fellowship at UC Davis. As I look back I’m struck by how we bonded around our health journeys and how we’ve become advocates for each other and others in the community.

I wrote the excerpt below for an Everyday Health blog about five years ago. Many of my older blogs (some dating back to 2007) have been removed in an effort to boost traffic to their website. It pained me to see hundreds of my columns removed, but I thankfully do have drafts or copies of most of them.

This particular blog focused on ways Lori and I support each other with our health challenges. It’s still true today–we are each other’s care partners and greatest champions as we daily live with chronic illness and disability.

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psoriasis, Psoriasis Treatments, Skyrizi

2 Years with Skyrizi for Psoriasis

A lot can happen in a couple of years. I’ve changed jobs, become an empty nester, and adjusted to (more forced into) pandemic life. But all through the past twenty-four months one thing has remained the same: Skyrizi.

I started taking Skyrizi to treat my psoriasis on May 31, 2019. With two years under my belt, I wanted to update how I’m doing and my experience with Skyrizi through a Q/A format.

Current Dose?

Skyrizi is normally dosed at every twelve weeks with two syringes making up one dose. When I began I took a dose at week 0 and then at week 4. These two doses are considered a starter, or loading, dose. My next dose, a maintenance dose, was at week 16 (or 12 weeks after the week 4 loading dose).

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coronavirus, psoriasis

Did the COVID Vaccine Flare my Psoriasis and Eczema?

April 7, 2021. In line at the Woodland Community and Senior Center to receive the first Moderna vaccine dose.

The moment the needle plunged into my left arm I began to feel anxious and lightheaded. My doctors encouraged me to get the first COVID-19 vaccine available to me. That day came on April 7th.

I felt reluctant to get vaccinated for fear that my skin conditions psoriasis and eczema might flare. But getting COVID-19 sounded much worse, so I relented. Once the needle came out of my arm I knew I could not go back.

I wrote on my Everyday Health blog that I don’t like needles. I can tolerate them now, but I generally feel a bit dizzy after a needle prick. This one felt much worse than others, however. It must have shown on my face. A nurse roaming the area where those recently jabbed waited fifteen minutes stopped to check on me. “I feel a bit dizzy and woozy,” I told her. She offered a Gatorade, which I reluctantly accepted.

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