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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Living with Psoriasis, psoriasis

The Science of Skin: A Journey of Hope and Home

This post, and my travel to the event, was sponsored by AbbVie Inc. Personal opinions and thoughts are my own.

Standing next to my poster at The Science of Skin, NYC

I rushed into the Whitby Hotel in New York City feeling late to The Science of Skin educational event. The stress of navigating a new city amped up my heart rate. I had traveled across the country and didn’t want to miss a beat. 

As I descended the stairs to The Reading Room, I felt transported to a familiar space. I first saw a picture of myself on a poster with a quotation about why I started blogging about psoriasis. Walking in further, I greeted new and old friends.

Indeed, The Reading Room became a special place for those few hours. I might characterize it as a safe place, but it was more than that. I not only learned from doctors and heard fellow patients transparently share their experiences with chronic skin conditions, but I also reflected on my own psoriasis journey.

A Student’s Attitude Toward Psoriasis

Since my diagnosis, my understanding of psoriasis has grown as I have taken the initiative to learn and read about the disease, its causes and the treatment landscape. I don’t claim to know it all, as information and treatments continue to evolve, so I always look forward to opportunities to be a student of psoriasis, which this event afforded.

The Whitby Hotel Reading Room, NYC

During the panel discussion about psoriasis, I recalled instances of people who told me flatly that psoriasis is just a rash. Over 40 years of living with this disease, I’ve seen the science prove them wrong. Now we know that psoriasis is a chronic disease linked to many factors, including an overactive immune system.

When I see those red plaques and lesions on my skin, I now know I’m seeing inflammation that is forcing my body to produce skin cells at a much faster rate than normal. Instead of a 28-day skin cycle, psoriatic skin produces new skin cells in a four to five-day cycle. That faster skin production leads to thickening of the skin as cells build up on the surface. Those skin cells then become the flaky scales and plaques that get all over my bedsheets, clothes, and floor.

In addition to discussing the science behind psoriasis, the dermatologists at the event also addressed other areas of psoriasis research. One even talked about how knowledge gained from developing psoriasis treatments is now helping researchers to develop treatments for other conditions. 

Coming to Terms, Again, With Psoriasis’s Impact on My Life

The Science of Skin event turned out to be more than just a scientific presentation of psoriasis and other chronic skin conditions, but rather, a look at the whole person. The discussions helped me realize that I’m not always as willing to acknowledge the deep impact of the disease on my daily life as I think I am.

I usually wonder if my skin will worsen with the stress of travel. This time I did feel a bit of skin discomfort, but when people asked how I was doing I quickly said “fine.” When speakers started talking about the isolation and shame that some living with chronic skin conditions can experience, I felt challenged once again to stop hiding the impact of psoriasis on my life.

Wonderful seeing Nitika Chopra who presented her experience with psoriasis

A survey conducted by the National Psoriasis Foundation that found 87% of psoriasis patients feel helpless and embarrassed, and 88% believe that psoriasis affects their overall emotional wellbeing, really resonated with me. Psoriasis has never been just skin deep for me, and now I have stats to back it up. The presenters emphasized the physical, psychological, emotional, and social impacts that can come with a visible skin condition—all of which I can attest to in my own experience. 

At the same time, I was glad to hear one dermatologist’s observation of how the psoriasis patient community’s mood has turned more positive as more effective treatments have become available. I’ve experienced that transformation in my life, and the last decade has been the most productive for my advocacy, work, and education. I didn’t settle for “good enough” and asked for more when it came to my psoriasis care. 

Now I want other patients to feel empowered to have an honest discussion with their dermatologists about their treatment goals for achieving clearer skin. As I grew in sharing with my dermatologists how I’m really feeling and thinking, I found myself more involved and satisfied with the decisions that were made for my psoriasis care.

As The Science of Skin event ended, I looked back at The Reading Room one last time.  The event marked a moment where I felt hope again for people living with psoriasis. I confidently stepped back into the city feeling that I could move forward in my journey with psoriasis as I turned toward home.

DisclosureThis post, and my travel to the event, was sponsored by AbbVie Inc., a biopharmaceutical company, and should not be construed to constitute medical advice. Personal opinions and thoughts are my own. I am not a medical professional and am not qualified to give medical advice. Please talk with your doctor about your individual medical situation. 

US-IMMD-200043

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psoriasis, Psoriasis Treatments

Skyrizi Week 6: Anxiously Awaiting Results

I’ve experienced a steady anxiety about Skyrizi the last few weeks. My expectations changed after I injected the second dose at week 4. With the next injection at 16 weeks, I figured the medication already in me must do the work.

A graph from the Skyrizi website show the percentage of those taking the medication reaching ninety percent improvement tapering off by week 16. For once I want to be part of that three out of four who get fantastic results from a psoriasis medication.

I Want It Gone Now

In my head I know I need to practice patience when it comes to psoriasis. Few medications work as quickly and effectively as I want. I want something like a Tylenol or Benadryl that starts working within the hour. What I typically get with these drugs is more waiting with less than stellar results at the end of months of waiting.

I don’t easily admit my impatience. I see myself as a veteran of these psoriasis wars—I’ve seen it all, and nothing surprises me. Expect little. Set the bar low to the ground. Manage expectations. All these platitudes mean well, but do little to curb the appetite that’s grown for something, anything, to truly knock down my psoriasis. The fact remains I’m no different than anybody with a severe chronic condition—I want it gone now.

Alas, it just doesn’t work that way (if it works at all). I want the rabbit, but many treatments act more like the turtle. Slow and steady wins the race, Aesop’s fable declares. But what if the turtle never makes it to the finish line?

Here are some photos comparing when I started Skyrizi and about six weeks later:

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