Coronavirus Lockdown Journal Week 7: May 4-10


On May 1st Yolo County extended the shelter-in-place order that started in on March 18th:

Some of the county is opening up, with certain outdoor activities such as golf and archery now permitted. Drive-in religious services are also open as of May 4th. 

Lori and I have been posting a weekly journal updated every day or two to mark thoughts, reflections, and news related to life sheltering-at-home.

This is week 7 of the lockdown.


Saturday, May 9, 2020

The Wonder Woman I Knew–A Mother’s Day Poem (Lori)

I will start with Beauty,
You always were that to me—
Green eyes, copper hair, and long flowing dresses,
The color of your lipstick and faint smell of hairspray,
Fill my early childhood memories with good things. 

Then there was the test of Strength, 
Mom, you got really sick. 
The doctors couldn’t figure it out, 
Some even believed you made it all up;
But we found a doctor who helped us understand 
As you lived with a chronic health condition for many years. 
You kept on going, living your life and in that resilience
Found a way to help others with similar conditions. 

Ohh my dear mother, you were the Love. 
I rarely had reason to doubt it. 
You were constantly by my side, 
Through every up and down I faced.
In my teen years you showed me that 
Love must sometimes be tough, 
But always believes and hopes for the best,
In me—your only child. 

The Grace and dignity you showed,
You extended it to many others. 
No one was excluded from your circle 
Of friendship and loyalty. 
You laughed with others in times of joy,
You held the hand of a friend suffering from terminal cancer. 
You taught me how to connect with people in meaningful ways. 

I speak the Truth,
I testify,
To these things that you were and still are, 
Even though you have left this earth. 
You never wore a cape or carried a lasso, 
But you were a wonderful woman,
A Wonder Woman to me.


Wednesday, May 6, 2020

Quarantine Nail Party (Lori)

Those who keep in touch with me on social media know I enjoy giving myself manicures. Manicures (and occasionally pedicures) are fulfilling to me in two ways: self-care and to show my creative side.  I am happy to share my most recent manicure in this entry. 

Why nail polish? Isn’t it sticky, smelly, time-consuming, and troublesome? If I am being completely honest, it is all of those things. If you can pull off the perfect at-home manicure, it seems to start chipping or peeling off as soon as you get it done.

Why bother? 

My struggle with anxiety began in childhood. I made a friend in elementary school who lived across the street from me for a few years. She and I became close friends almost right away. We had a lot of common ground—similar interests, of course—but namely we both found our home lives somewhat stressful. She had two older sisters and they were all within three years apart in age.

So, when I went over to play Barbies at her house, there was a lot of slamming doors and yelling between sisters. Over at my house, we watched TV in a home where a chilly silence had taken over. My family members avoided each other either physically and/or emotionally and I had no siblings.

We both struggled with anxiety—and both bit our fingernails hard and deep. Sometimes my nails would bleed and I needed to use band-aids. 

My friend and I shared some kind of deep understanding of our own personal struggles—not something nine and ten-year-olds are able to articulate but we could sense the feeling of deep camaraderie between the two of us. It seemed okay to bite my fingernails and I knew someone else who did the same thing, so why not? It relieved a lot of anxiety for me. 

When I started getting negative comments about my nails from family members and classmates at school, then I knew something was wrong. All the other kids in my class seemed to have short, evenly clipped fingernails. Not jagged, torn nails like mine or my friend’s nails. With my friend learning in a different classroom the next year at school, it gave me the space to consider how I could stop this habit. What could I do?


We both struggled with anxiety—and both bit our fingernails hard and deep.

Sometimes my nails would bleed and I needed to use band-aids. 


Enter the new girl into my classroom in the middle of that school year. She had short blonde, curly hair, an infectious laugh, easygoing manner and wore light blue nail polish. With glitter in it. Wow! I was completely enraptured by this.

I had seen my grandmother wear clear nail polish and my mom—on occasion for a fancy dinner—wear a pale pink color. I didn’t even know this light blue glittery color existed. I made friends with the new girl at lunch that day and I when I went home after school, all I could think about was that nail polish. I had to get myself invited to her house and grow my nails out long enough to paint them with the coveted color.

It took about three weeks of cold-turkey no-nail-biting resolve, but I finally had baby stubs for nails. And sure enough, she invited me over to play one afternoon and I polished my nails a glittery baby blue. I never bit my nails on a regular basis again. 

I decided to give myself another quarantine manicure two days ago. My last one chipped after doing lots of dishes, so I decided to start over. The main color is “Storm” by Zoya. It’s a black nail polish with flecks of multi-colored glitter in it.

I looked off and on for this nail color for a few years and finally found it at a local store. It reminds me of this uncertain time we are going through with the pandemic—sort of like a storm on the sea or in the sky. It suddenly comes and goes without warning. It is dark but there are glimpses of light and brightness during storms. That gives me hope.

The bright pink color on the accent nail is from China Glaze, a nail polish brand that I love. I didn’t realize it was from the Sesame Street collection they have until after I purchased the polish. Well, Sesame Street was born the same year I was and the color is named, “Fur Real Though.” It’s a happy color and I also have some daisies and miniature roses that are blooming in my garden in the same vibrant hue. 

I hope you have found some activities during this time of shelter-in-place that are fun and meaningful to you. And maybe after this is all over, I’ll put my 50+ bottles of nail polish on display. You can come over and borrow a bottle or two!


Monday, May 4, 2020

The Illusion of Control (Howard)

As long as I can remember I’ve wanted to control my environment and future. I attribute this neurotic personality trait to what felt like a chaotic upbringing. Outside of my home I experienced bullying for being Chinese and having a visible skin disease. Inside the home I felt unsafe for reasons I won’t go into detail here.

The chaos from without seeped into my heart in a way that led me to feel insecure and anxious within. The coronavirus pandemic and lockdown are showing me how far I’ve come, but also how much I struggle with control issues.

A Child Needing Order in Chaos

As I entered my teenage years I began to make more decisions for myself. I naturally sought to limit uncertain outcomes and surprises. Of course, I couldn’t control everything so I focused on a few areas.

I became a straight-A student, preparing tirelessly so I could do the best on the exam. I avoided awkward social situations. I stayed out as long as I could each day, mainly going home to sleep and shower.

The chaos from without seeped into my heart in a way that led me to feel insecure and anxious within.

In college I took classes designed to my academic strengths. I sidestepped courses that required oral presentations or long papers, opting for problem sets. This way I could minimize the ambiguity of subjective grading. Even though my psoriasis spread out of control, I diligently treated it everyday according to what my doctor prescribed. At least that much I could control.

Addressing a Lack of Control

At various stages of my life I’ve continued to try to control my environment and outcomes. I finally asked a therapist whom I saw in 2011 for about two months for a major depressive episode why I felt so angry and anxious about what I could not control.

He helped me see the ineffective ways I coped with the insecurity and fears in my heart. Some negative habits I could attribute to poor coping skills. But my strong drive to control outcomes and avoid risky situations appeared to directly correlate with my internal struggles.

A great example of my need for control came up in a therapy session. I planned to join my mentor on a trip to the UK to explore starting a project there. So much was out of my control: would I travel well alone; would my skin hold up on an international trip; would I adapt to a new culture (a car almost hit me on a country road when I looked the wrong way before crossing); would I speak well; etc.

[My therapist] helped me see the ineffective ways I coped with the insecurity and fears in my heart.

I wanted to know how to best approach this anxiety inducing situation. He told me I needed courage and faith.

Courage and Faith

As I look back on an incredible and productive trip to England a decade ago, I’m struck with how right my therapist was. I tend to shrink in fear when I enter a situation with as much ambiguity and variability. But facing it with the courage that God gives, an expression of faith really, I made it through that passage in much better shape.

In the coronavirus pandemic I’m once again faced with so many uncertainties about health, future plans, and family (Lydia took a Covid-19 test this week; we’re awaiting results). Once again I sense the need to call up the courage that comes through faith in an awesome God to face down these giants.

It’s a daily struggle, and I am genuinely fatigued like so many others with lockdown measures and fears of getting sick with Covid-19. Just a reminder to take life moment-by-moment as the veil that is the illusion of control is ripped off by this virus.

24 Weeks with Tremfya: A Pattern Emerges

Twenty-four weeks ago on Monday, August 21, 2017, I took my first injection of Tremfya (guselkumab) to treat my severe psoriasis. That day I witnessed a solar eclipse as I drove to the dermatology clinic in Sacramento. I recalled the day in grade school (February 26, 1979) when the last total solar eclipse occurred in the Northern Hemisphere. That’s around the time when the first psoriasis lesions emerged on my skin.

Over the course of those almost four decades between total solar eclipses I’ve battled severe psoriasis. Sadly, few treatments helped to effectively relieve the inflammation over those years.

I survived messy and smelly coal tar formulations, phototherapy burns, painful side effects of soriatane/etretinate, liver biopsies with methotrexate, rising blood pressure with cyclosporine, and five biologic mediations with injections. Not to mention the strange diets, supplements (I need write about the snake skin powder), alternative Chinese medications, and other unmentionables I tried to “cure” my psoriasis.

Over the course of those almost four decades between total solar eclipses I’ve battled severe psoriasis. Sadly, few treatments helped relieve the inflammation over those years.

Would Tremfya finally be the treatment to eclipse the nagging psoriasis all over my skin?

High Hopes and Expectations for Tremfya

Going into the clinic for my first injection I felt both excited and nervous. All those hopes and dreams of wanting to find “the one” treatment rested in that syringe full of medical innovation. That’s a lot of pressure and expectation on one treatment.

I knew before long that Tremfya would not be the cure I desired, even though it never promised to be one. By week 6 I began to redefine my expectations:

So, I’m lowering my expectations for Tremfya. I do hope this awesome new medication can beat the lowered expectations.  But if it can’t quite climb to the top of that mountain, I’ll take something less. I’ll take less than clear skin. I’ll accept if it needs something other than cyclosporine, such as phototherapy, or stronger topical treatments, to work more effectively at suppressing psoriasis.

Of course, I still hope it clears my skin in a couple months. But if it doesn’t by week seven or eight, I won’t fret about it not doing its job . . . at least not quite yet.

Going into week 21 I’m not fretting about whether or not Tremfya will work or not. Instead, I’m observing a pattern emerge on how it works with my psoriasis. Continue reading →

6 Weeks with Tremfya: Redefining Expectations

The sunsets here in Northern California’s Central Valley can light up the sky with a myriad of colors. I took this shot while exercising, reminding me how precious moments like these are to not waste–especially as the wait for Tremfya’s ultimate result continues.

When I started taking Tremfya (guselkumab), I carried an unstated goal and expectation: clear skin. I looked at the graphs and incredible data on the effectiveness of Tremfya and just figured I could enjoy life with less and less psoriasis over the course of sixteen weeks.

At six weeks, some forty-two days later, I’m readjusting my expectations.

I know I need to wait another couple of months to see the full effect of Tremfya on my over-active immune system. But so many other factors become involved in how my skin looks than if I take an injection every eight weeks or not. I just hoped that the new injection would strong arm all those other triggers to where they would give up their fight.

—————–

Follow my Tremfya journey:

Tremfya (Guselkumab) Week One

3 Weeks with Tremfya: The Waiting Game

5 Weeks with Tremfya: Biggest Fear?

8 Weeks with Tremfya: It’s Working!

10 Weeks with Tremfya: One Step Back

12 Weeks with Tremfya: The Third Injection

14 Weeks with Tremfya: What’s Next?

16 Weeks with Tremfya: The Verdict?

20 Weeks with Tremfya: Read the Instructions! (4th Injection)

24 Weeks with Tremfya: A Pattern Emerges

28 Weeks with Tremfya: Still Working? (Injection #5)

38 Weeks with Tremfya: The Question/Answer Edition

42 Weeks with Tremfya: Coping with a Skin Flare

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They are not giving up so far. The biggest factor appears to be tapering cyclosporine. I knew that psoriasis and eczema would inevitably rebound as in the past. While I enjoyed some relief from psoriasis after a few weeks on Tremfya, over the last couple weeks all kinds of rashes broke out on my scalp, trunk, legs—almost everywhere. The spots that went away a few weeks ago came back as itchy, red, and irritated sores.

Tremfya might still win out in the end, but the process is not the straight line to spotless skin I imagined or hoped.bNow that I’ve come back down to earth, what are my expectations for Tremfya? How do I define success if it’s not clear skin with no complications?

Lowering Expectations

As a graduate student, I carried high expectations for everything. I thought I only needed to say something once then (most) everyone would agree and understand. I figured that if I learned a lesson that I learned it for life with no relapse. I expected my work at church to be as easy as learning in school.

My mentor pulled me aside to gently tell me to lower my expectations for just about everything.  What?! That sounded so wrong to my idealistic brain. But my mentor passed on wisdom that applied to so many aspects of my life since, including psoriasis.

So, I’m lowering my expectations for Tremfya. I do hope this awesome new medication can beat the lowered expectations.  But if it can’t quite climb to the top of that mountain, I’ll take something less. I’ll take less than clear skin. I’ll accept if it needs something other than cyclosporine, such as phototherapy, or stronger topical treatments, to work more effectively at suppressing psoriasis.

Of course, I still hope it clears my skin in a couple months. But if it doesn’t by week seven or eight, I won’t fret about it not doing its job . . . at least not quite yet.

—————–

Of course, I still hope Tremfya clears my skin in a couple months. But if it doesn’t by week seven or eight, I won’t fret about it not doing its job . . . yet.

—————–

Raising Awareness

In the meantime, week 6 of Tremfya coincided with the second annual TeamNPF Walk in Sacramento. Last year we registered about 50 people and raised just over five thousand dollars. This year we hit 75 people and seven thousand five hundred raised!

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I’m amazed at how little people know about psoriasis, and the resources available to them. My motivation and encouragement comes from every time someone says that they never met others with psoriasis, or how difficult living with psoriasis can be.

My family came out early in the morning on a Saturday to join the walk and volunteer to lead the walk group. Their support and love means the world to me as I pour so much of my life into inspiring, empowering, and advocating for those impacted by psoriasis.

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Verse of the Week: Isaiah 53:4-5

This verse from Isaiah once haunted me. The suffering servant brought healing to wounds. So why aren’t my wounds of psoriasis gone, I wondered. I came to accept that they are healed, but perhaps not in this lifetime or in the way I might expect.  Now the verse is comfort to me as I put my hope in a future redemption of this body–no matter what happens with Tremfya or any other medication.

Surely he took up our pain
    and bore our suffering,
yet we considered him punished by God,
    stricken by him, and afflicted.
But he was pierced for our transgressions,
    he was crushed for our iniquities;
the punishment that brought us peace was on him,
    and by his wounds we are healed.

Easter Hope in a Stormy Time

This week is a busy, busy week for me. Palm Sunday I spoke twice in the morning, and led an intense ninety-minute meeting over lunch with a leadership team of twenty. On Tuesday, my colleague developed a persistent cough. I covered for him to lead the Tuesday evening prayer meeting at church. Somehow the church leaders nominated me to speak on Good Friday. To top it off I’ll speak in one Easter service, and baptize a member of our English congregation at Davis Chinese Christian Church after lunch. Whew.

While it’s a busy week for me, I’ve also looked forward to this week. It’s a special time not just for the church, but also for me.

My psoriasis story connects to my faith in my teenage years. I didn’t grow up with any kind of religion–except the odd mix of occasional ancestor worship and a prayer at a holiday dinner. But my teenage years turned quite tumultuous with conflict in the family, high levels of anxiety and pressure to succeed at school, fear of failure in both social situations and academically, and racial discrimination. I became depressed and borderline suicidal during my high school years.

Psoriasis obviously didn’t help lift my mood. I experienced severe psoriasis without much by way of treatment. I didn’t start taking any systemic medications, like methotrexate, until I attended university. Back then I used tar, topical steroids, and a wooden light box constructed by my dad and me. Phototherapy in a cold garage mid-winter isn’t pleasant. At least it warmed me up some. But it didn’t help suppress the psoriasis as much.

My dad became depressed during the Reagan economic recession, worrying about losing his job. His six-month disability added immense pressure on the family. He didn’t break out of his depression until he started going to church. Family members followed him one by one. I finally relented, the last one in the family, accompanying him one Sunday to a small Chinese non-deonimational church. Turned out the youth didn’t like me much as I engaged in a wrestling match during a pick-up football game after the Bible lesson.

But the emptiness in my heart persisted despite the rude welcome by my peers. I knew I needed to hold on to something that wouldn’t let me down or suddenly change. On an Easter Sunday in the mid-80s I responded to a call to go forward at the end of the church worship service to learn more about Christian faith. My life really changed after that.

I look back at that time over thirty years ago as an anchor for my soul. Times are busy as a minister on a team overseeing a church of almost four hundred. As I write this I have a Word document open with the Easter message in progress, a shower cap on my head while I apply a low strength steroid on my scalp for four hours, and a daughter with bipolar disorder who continues to recover from a nasty episode. With the pressure I feel from work and at home, and the ever-pressing need to keep up psoriasis treatments and advocacy/writing, I need that anchor every day.

It’s also a crazy time in our world. I watched the press conference with the Secretary of State in Russia talking about Syria. San Bernardino, not too far from where I used to live in the Los Angeles area, was hit again with tragedy. North Korea is in the news again. It’s a stormy time.

Easter hope started when I was a teenager in a stormy time. It’s windy outside now. I didn’t see this spring storm coming. My life feels like a ship in the sea–storms coming and going, I bob up and down, but with a strong anchor I hold on to that hope for when the sun will shine again.

Hebrews 6:19-20: We have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain, 20 where our forerunner, Jesus, has entered on our behalf.