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.
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).
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.
On March 19, 2020 California Governor Newsom announced a statewide stay-at-home order. Here is a screenshot from my phone:
Recently both the county and state extended the lockdown to May 1st. With the president and governors talking about opening up the economy again, there is hope this lockdown will end soon.
Until then, Lori and I plan to post a weekly journal updated every day or two to mark thoughts, reflections, and news related to life sheltering-at-home.
This is week 5 of the lockdown.
Sunday, April 26, 2020
Resting and Sabbath
My sabbatical from church ends in about a month. Something I desperately looked forward to was a break from the grind of church ministry. After fifteen years of pastoral ministry without a longer break, together with the challenges and crises the family faced, I desperately wanted some time to rest.
Before I started my sabbatical an acquaintance asked me about my plans. I briefly mentioned travel, writing, and sleeping in whenever I wanted to. He told me those activities would no doubt be life giving. He also stressed the importance of mentally gaining distance and perspective from my daily work.
As I hit third base and turn toward home (excuse the baseball analogy), I can see the past three months have not turned out anything like I expected. I did travel a bit in February, but had to cancel the rest of my trips. I’ve blogged more, but haven’t come around to working on my book or study guide.
As I hit third base and turn toward home (excuse the baseball analogy), I can see the past three months have not turned out anything like I expected.
Sleeping in has been restorative physically, but it has been the distance from work that has renewed me in ways I didn’t anticipate. I have time to think, meditate, and process life. Lori and I can spend (relatively) stress-free afternoons together.
The mental, emotional, and spiritual renewal from this break is exactly what I needed. Although the coronavirus crisis ruined my plans (and of course it is much bigger than me and what I wanted to do), I’m glad the time turned out the way it has.
Finally, on this Sunday, I’m praying for those on the front lines of the Covid-19 response and those personally impacted by the illness. May God be merciful and bring healing to this devastation.
Thursday, April 23, 2020
Coronavirus and Psoriasis (Howard)
UPDATE: I mentioned on Monday that I messaged my dermatologist, Dr. Carroll, about taking Skyrizi before Tuesday. In her reply she surmised why my psoriasis flared recently: skin damage from phototherapy burn and possibly needing Skyrizi more frequently.
Since she said I could inject the medication anytime, I decided to go ahead last night. One dose comes in two syringes, so I injected one on the left and one on the right of my belly button (at least two inches out).
I experienced the normal lightheadedness and fatigue just after the injection. Still some after effects today, but definitely nothing to horrible.
With the lockdown I’ve had more time to write for my column on Everyday Health, The Itch to Beat Psoriasis. In particular, I’ve published three articles about psoriasis and the coronavirus pandemic.
I’ll finish today’s entry with links to each of them.
I have been longing for Howard and I to cook together for many years. His work as a minister is very demanding—both early morning and evening meetings in a given week that would require him to be away from home.
When would come home from work, I would want him to either take some personal time or just spend time with the children. I would figure out the dinner menu. Some days were full for me as a minister’s wife so I would skip cooking dinner completely—get some takeout from a restaurant or fast food.
It was “kid food” anyways, I reasoned, so the kids and I would all feast on fried chicken, hamburgers and fries, chicken nuggets, etc. Especially if Howard attended a small group church meeting, there were often potlucks where he could eat dinner and sample church members’ home cooking.
It was a win-win. Except I felt like something was missing. Long gone were the days when I was at my grandmother’s house helping her fix a homemade meal and then talk with her over washing the dishes afterwards—she would wash, I would dry.
This post, and my travel to the event, was sponsored by AbbVie Inc. Personal opinions and thoughts are my own.
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.
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.
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.
As TheScience 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.
Disclosure: This 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.