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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coronavirus, Living with Psoriasis, psoriasis

I Almost Didn’t Get My Bivalent COVID-19 Booster

One hour before my appointment at CVS pharmacy I felt deeply unsure about getting my COVID-19 booster. (Photo by Miguel u00c1. Padriu00f1u00e1n on Pexels.com)

I knew I wanted my annual flu shot. But I couldn’t decide on whether I really wanted to get another COVID vaccination.

To help make my decision I messaged my dermatologist the day before. I waited for the email notification that she had responded to my request for her medical advice. As of the time I left for CVS I had yet to hear back from her, but felt that she would say go ahead since we talked about getting boosted earlier in the year.

Making the Decision to Get the COVID Bivalent Booster

I didn’t get my second booster earlier this year even though I was eligible and encouraged to. I had the passing thought I might be immune to COVID already and didn’t need it. 

I’ve had multiple known exposures to people who tested positive for COVID and never got it myself (unless I had an asymptomatic case). Most recently Lori had a bout that lasted a few weeks. I didn’t sleep in the living room until a couple of days after she started feeling unwell. Not getting COVD from Lori made me feel invincible.

Having psoriasis does not suppress my immune system either. But taking a biologic (monoclonal antibody) for psoriasis that modulates my immune system edges me into a potential higher risk group for more severe COVID symptoms. Asthma is a risk factor that I had to consider as well.  Turning 50 years old makes me a candidate for a host of vaccines, including the bivalent COVID-19 booster.

Fearing Side Effects of the Vaccine

The first three Moderna jabs (initial two rounds and first booster) made me feel ill for two to three days each time. The side effects ranged from severe headache, stomach upset, sorest arm I can ever remember, sour joints throughout my body, brain fog, and low-grade fever. 

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Living with Psoriasis, Personal Faith, Spirituality

Two Questions About Prayer

(Photo by Sagui Andrea on Pexels.com)

Last month I posted a column on Everyday Health titled How the Power of Prayer Helps Me Face My Psoriasis. I shared questions I had as a young adult with psoriasis who recently found the Christian faith:

Is it selfish to pray for yourself when the world has real problems? Is it possible to know if a spiritual practice like prayer can be a healing force in the face of a chronic condition like psoriasis? Am I wasting my energy praying if my health doesn’t improve?

You can read more about my thoughts on these questions in the column. Here I would like to interact with a couple of question that didn’t make it into the Everyday Health blog.

How Much Prayer Is Enough?

“I pray because I can’t help myself. I pray because I’m helpless. I pray because the need flows out of me all the time, waking and sleeping. It doesn’t change God. It changes me.” (Attributed to C.S. Lewis in the movie Shadowlands).

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