This year happens to be one of major milestones. I will be graduating with a bachelor’s degree after seven long years of undergraduate work that has been riddled with health setbacks. I will also be turning 25. It feels like a prime opportunity to reflect on my life journey and how it’s been shaped by living with bipolar disorder. While it certainly hasn’t been easy, I’ve grown in ways I likely never would have otherwise.
A developing diagnosis
When I began experiencing mood swings as a young teenager in high school, I would have never guessed their implications for the rest of my life. I was certainly moody in ways many teenagers experience, but it was when I began self harming and daydreaming about suicide that I knew something was very wrong.
I remember a fellow classmate pointing out the scabbed over cuts on my wrist and asking what happened. I quickly pulled my sleeve over the evidence of my tumultuous mind and blamed the cat. They didn’t seem convinced but didn’t push the issue further. That moment of fear, guilt, and shame at my actions was a clear sign to me that I was ill. However, it wasn’t until much later that I finally asked for help.
That moment was one of the scariest of my life. I knew once I told my parents about my cutting and suicidal thoughts that I couldn’t go back to normalcy. But at that point, normalcy was locking myself in my room anytime I wasn’t at school. It was sitting in the dark with sharp blades, crying for reasons unknown to me, trying to push out the intrusive thoughts that constantly berated me. Although I wasn’t fully conscious of it, I had reached the point where I couldn’t live that way any longer.
As I predicted, life changed drastically. I began seeing a therapist weekly and started medications. The initial diagnosis of depression didn’t seem to quite fit, but having a name for all of these unwelcome thoughts and feelings seemed to help. While this time of my life is extremely blurry, I know I struggled desperately to regain a foothold but the ground seemed to keep slipping out from under me.
On March 19, 2020 California Governor Newsom announced a statewide stay-at-home order. Here is a screenshot from my phone:
Currently the lockdown continues until May 1st, although the Yolo County site says that an extension is forthcoming. With the president and some states now opening up the economy, there is a glimmer of hope the lockdown will let up even more so in California and Yolo County in the coming weeks.
Until then, Lori and I continue 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 6 of the lockdown.
Saturday, May 2, 2020
When Plans Change
“’Cause I told you my level of concern,
But you walked by like you never heard,
And you could bring down my level of concern,
Just need you to tell me we’re alright, tell me we’re okay.”
-twenty one pilots
I love Hawaii. And what’s not to love? Beaches, mountains carved from volcanoes, weather that changes from rain to sunshine in a moment, pineapple fields, the Aloha spirit of those who live there.
We are supposed to be in Hawaii right now. Celebrating our 25th wedding anniversary that was actually LAST August. We went to Honolulu for our honeymoon and have never been back.
Our destination this time was supposed to be Maui. We’ve heard wonderful things about Maui from friends who have visited. I can remember how excited I felt when Howard booked the plane tickets. I thought, “Wow. This will be a time to really celebrate all we’ve been through together the past 25 years—to reminisce and enjoy time together in a blissful tropical location. Just the two of us.”
Now I am writing from shelter-in-place at home. After plane tickets and hotel reservations were cancelled. After the return home I thought I would be enthusiastically showing off my tropical tan, telling tales of snorkeling with fish, and boring friends and family with pictures. Lots of pictures. Proudly on display on my Facebook account.
Instead I’m rolling out of bed close to noon these days and wondering what to make for lunch. I’ve made so many lunches at home now—I don’t know anymore. Where is the lunch menu at the local Hawaiian barbeque place where I can just order from?
The main thing I know during this time is that it’s okay to mourn the loss of this trip. It’s okay to realize flying off to Hawaii and basking in the sunshine would have been really good for my physical, emotional and mental health. It’s also okay to know that I had pumped up this trip in my mind as a “trip of a lifetime,” and none of those expectations were met. At all.
The main thing I know during this time is that it’s okay to mourn the loss of this trip.
But my life in quarantine? It’s really good, actually. I have my husband at my side for most of the time. We pray together, we talk together, we roast and drink coffee together. I tend to my garden—it is probably the best Spring I’ve had in my garden. Ever.
We have our son at home with us for now, and just knowing he is here doing his own thing and feeling healthy is a big deal. Seeing our daughters on FaceTime at least once a week and their smiling faces is huge. We have our dog and our kitten to look after and enjoy their company.
And really—when it comes down to it, I wouldn’t want to be in Hawaii by myself. I know that wherever I am with Howard is truly home.
Friday, May 1, 2020
Read the Bible in a Year (Howard)
Each year I attempt to read through the Bible in a year. This year, with a four-month break from work, and now shelter-at-home orders, I feel more confident I can accomplish it.
Here is a scan of the Bible reading plan I adopted some years ago with this year’s progress so far:
I know there are some great online/electronic Bible reading plans out there, but I like the simplicity and variety of this plan. Each day of the week focuses on a part of the Bible such as New Testament letters, prophets, and Gospels/Acts. I still need to catch up on the second half of Isaiah, but decided to keep going.
The best part of following a reading plan is staying in the Word each day. Over the weeks I’ve struggled with various moods and feelings related to the lockdown. Whether it is feeling sad, anxious, lethargic, fearful, or restless it seems like something I read each day helps me face the challenges of that time.
The best part of following a reading Whether it is feeling sad, anxious, lethargic, fearful, or restless it seems like something I read each day helps me face the challenges of that time.
I also enjoy sharing about what I read with Lori. Every day we spend a few moments reading Scriptures, singing praise songs, and praying. I like to reflect on highlights from my daily reading during that time.
I hope I can keep up my reading and meditation time after the lockdown ends and I’m back at work. For now it’s a needed and welcome activity that helps me through this scary and uncertain time.
Wednesday, April 29, 2020
A Day at the Zoo (Lori)
There’s a lot of attention around “Tiger King,” which is arguably a very popular coronavirus pandemic viewing experience. Meanwhile, we’ve been managing our own small menagerie at home.
When our kids were growing up and living at home with us, our youngest always wanted to try owning new pets. She would visit her friends’ houses and then want a similar pet to what she saw there; and, yes, some of them were definitely exotic.
Geckos, chameleons, turtles, snakes, fish, etc. were all requests that were presented to us with the pleading, “Please, Mom!”, “Please Dad!” I honestly didn’t know the first thing about caring for a chameleon, so we deftly talked her into fish and hamsters.
We’ve had hamsters rolling across the living room floor in their balls and knocking into furniture. Fish had their water changed from their tanks at the sink in the laundry room.
These days, we have only our dog, Teddy, and our kitten, Pippin. It’s been fairly quiet until this last week. To be honest, I was so preoccupied with meal planning and preparation I didn’t even really notice they were in the house.
Then we observed Teddy getting really tired on short walks to the park and shaking his head from side to side.
So, I asked Howard to check his left ear and it seems his previously diagnosed condition at the vet office flared up again. Thankfully we still have the ointment we purchased.
Then I suddenly noticed Teddy was chewing his paws again until they were red and sore. I don’t know if this is from stress about his ear condition or plain boredom, but I made him wear a cone until his feet and ear started to heal.
Pippin the Little Tiger
Pippin is a wild one. She came to our yard about a year ago as a feral kitten. We have domesticated her somewhat but she still climbs trees, onto the roof, and hunts all kinds of creatures—from pigeons to lizards to insects.
One day I noticed she pounced on—and killed—a bee that was buzzing near my budding lemon tree. I was momentarily concerned but then relieved that she didn’t get stung by the bee.
Happy Lunar New Year 2019! this year is my year, the Year of the Pig.
Happy Lunar New Year! Last week my family celebrated Chinese New Year with a family dinner and red envelopes filled with money from my parents. My mom gave clear instructions to place the red envelopes under our pillows on Monday evening. If we didn’t the money would not be lucky.
I looked forward to this year for many reasons, including being born in the year of Pig along with my firstborn daughter. If you can do simple math you can figure out how old I am (there are 12 years in the Chinese zodiac) and how old my daughter is. Someone wrongly said that I was twelve when I had my daughter (umm, add another cycle of the zodiac please).
It’s a year of milestones for the Chang family.
Four Decades with Psoriasis
Forty years with psoriasis. I’m trying to let that sink in for a minute. I know it’s not a world record for longevity with this autoimmune condition. Yet, the weight of almost 15,000 days with itchy, scaly skin feels heavy on my mind and heart. So many of those days I felt depressed, beaten, and lost. Some days felt extremely long, like a week or month in itself.
I’m grateful today, though, for much better treatments and control. I’m glad for opportunities to write and advocate for others living with psoriasis for just a few days or years, to those who endured more decades than one can count on a hand.
I also see that life marched on with psoriasis. I graduated from high school 30 years ago. I got married 25 years ago, and began pastoring churches 20 years ago. My youngest turns 18 in a few weeks, while my oldest turns 24 in a few months. These round numbers represent the passage of a significant amount of time and markers that beg notice as the days whiz by.
Most of all, I survived. At times I even achieved goals and thrived. Through it all my faith sustained me. I’m not an overly demonstrative person, but this year it’s time to celebrate making it this far and all that is to come.
Fuller Theological Seminary Doctor of Ministry Commencement, 2016
Calendar of Milestones
In looking forward to this year, 2019 and the Year of the Boar, here are some upcoming events we are all excited about.
Thanks to my daughter Lydia for redrawing my psoriasis origin story comic. She surprised me on Christmas with it. I used the comic to speak to teens at the most recent National Psoriasis Foundation (NPF) volunteer conference in the summer of 2017.
My psoriasis was first triggered by that unwashed sleeping back when I was an elemetary school student:
I love visiting my parents in Orange County, California, especially going to the beach. But this last time around my psoriasis flared during the trip and is only slowly calming down.
The anniversary of my first injection of Tremfya (Guselkumab) came and went in late August. In a way it’s a good sign that the time went by quickly, for as the saying goes, I had more freedom and fun while it knocked down skin inflammation. In fact, I can’t get enough of Tremfya.
Why Can’t I Get More?
Soon after starting Tremfya I recognized a pattern that continues to this day: about six weeks into the eight-week injection cycle the psoriasis begins to break out. It’s a thin, red, guttate type psoriasis. I call it a “thousand points of psoriasis” lighting up my skin. Lots of little dots or eraser head size lesions that peel and leave a dark pink to red raw skin underneath.
I call it a “thousand points of psoriasis” lighting up my skin. Lots of little dots or eraser head size lesions that peel leave a dark pink to red raw skin underneath.
I asked Dr. Carroll, my new dermatologist starting here in 2018, if I could take Tremfya more frequently. Ideally, I could get an injection every four weeks, but I asked for every six weeks. Predictably, my insurance denier provider said no. Upon appeal they also said no.
Like a petulant child I thought I could proverbially stomp the ground by appealing until I broke the insurance company down to give out another couple injection a year. But they are stubborn, like I am as a parent. I asked why and they gave me the “there are no studies to substantiate the effectiveness of taking Tremfya more frequently,” and the “FDA approves Tremfya for every eight weeks” so you are out of luck kind of answers.
I get it. It’s $10k for one injection. But that one or two extra injections could make a huge difference in my quality of life. Thankfully, they approved the normal dosage so that my quality of life is substantially improve already.
But wow it would be great to get a little more.
Here is my right arm taken on September 18, 2018 at the end of my eight week Tremfya cycle. Relatively flat, red spots that more peel than flake and not itchy. They tend to start going away a couple weeks after taking the injection.
It Would Be Great for Stress Events
It’s not just that I want to pry the insurance provider’s fingers off of that precious box of Tremfya comes in for selfish gain. I need it for those stressful times I’m working at the church, helping out the family, or madly meeting blog deadlines. Continue reading →
The day after I turned sixteen years old I took my driver’s license exam. That summer I utilized my license to deliver office supplies around the Bay Area and drive to Southern California with my friend. The highlight of our SoCal trip included taking in baseball games at Jack Murphy Stadium (San Diego) to watch the Padres, Dodger Stadium (Los Angeles) to see the Dodgers, and Anaheim Stadium (Orange County) to watch the Angels.
That’s when my goal of visiting every MLB baseball stadium in American began.
Baseball holds a special place in my heart. Playing Little League baseball as a nine-year old introduced me to American culture. I grew up in an immigrant Chinese family and faced discrimination in those early days. But baseball served as an outlet for an energetic young boy facing uphill challenges with psoriasis and bullying.
My hard-working dad took me to San Francisco Giants games when I earned free tickets for good grades. The Giants gave away tickets to evening games at the frigid and windy Candlestick Park. Still, I loved going to those games watching Jack Clark, Darrell Evans, and Greg Minton out on the diamond.
As a kid I only dreamed of ever seeing a game at places like Fenway Park or Wrigley Field.
Landing in Chicago for HealtheVoices
In late April my daughter Lydia and I flew into Chicago for the HealtheVoices conference–a gathering of over 120 online patient advocates from some forty different disease states. Lydia mainly wanted to see a friend and visit Chicago sites. Since I had more time the first two days we set aside time to see the town together before I became busy with conference meetings.
The first day we went to Millennium Park and Navy Pier. Day two, after my meeting ended in the mid-afternoon, we headed out for an early Chicago deep dish pizza dinner. The walk from the hotel took a bit longer than expected. We needed the exercise so I didn’t mind. By evening, though, the cold wind whipped up reminding me Chicago’s moniker is “The Windy City.”
Riding the “L” After Dinner
I couldn’t help but think about the television show ER, set in Chicago, where the doctors would take the “L” subway system after their shift ended. I wanted to ride the “L” just once to honor that memory. A ride back to hotel turned out to be the perfect excuse to find the nearest station.
Once seated on the train I figured out our stop for the hotel would only take a few minutes. On the subway map I noticed the Addison Street station stop a bit farther north than the stop for the hotel. I also somehow remembered that the Chicago Cubs play at Wrigley Field on Addison Street. A quick Google search confirmed we could see the baseball stadium if we took the “L” a few more stops.
Later we learned that the neighborhood around Wrigley Field isn’t necessarily the safest. Unknowing tourists traveling on a whim sometimes don’t know any better. Besides, with wanting to see the San Jose Sharks playoff game against the Las Vegas Golden Knights later that evening, we’d only have enough time to take a quick picture.
To my surprise the stadium lights lit up the night sky. People milled around the stadium and storefronts welcomed customers. All signs pointed to Wrigley Field playing host to a Cubs home game.
Buying Tickets from a Reseller (Okay, Scalper)
We ran around the stadium to find the front entrance where I could take a quick picture. The tied game against the Milwaukee Brewers had entered the bottom of the fifth inning. As soon as Lydia took this photograph of me the ticket resellers (scalpers) descended on us like vultures spotting prey.
The first offered me a bargain basement $25 a ticket for, of course, the best seats in the house. I politely said no then walked away. The second wanted to sell me lower deck seats for $10 each. I said no and walked even further away. He followed me for about twenty yards. After a short whisper deliberation with Lydia, I told him I would buy the tickets only if he walked to the entrance gate with me to confirm their legitimicy.
A few minutes later Lydia and I entered into Wrigley Field for the first time. The tickets gave us a great view along the left field line with some obstructed view only above us.
A few minutes later Lydia and I entered into Wrigley Field for the first time. The tickets gave us a great view along the left field line with some obstructed view only above us.
Singing “Take Me Out to the Ballgame” at Wrigley Field
Any baseball fan knows how iconic singing “Take Me Out to the Ballgame” during the seventh-inning stretch is at Wrigley Field, especially with legendary Harry Caray. A great MLB article Famous fans stretch their pipes at Wrigleydescribes this Cubs tradition. I waited expectantly for the top of the seventh to finish then signaled to Lydia it’s time to sing.
Here’s a video of that memorable moment:
Immediately after the song ended we ran for the exits wanting to avoid the rush out of the stadium. On the way out we stopped at the gift shop, took a quick pit stop, and snapped a few more photos.
The Cubs ended up winning 1-0, with the winning solo home run by Kyle Schwarber hit in the bottom of the sixth inning.
You never really know what adventures life might take you on when you get invited to a conference because you’ve blogged about psoriasis for over ten years. Or you decide to take the train instead of walk after dinner. Or what might happen if you stay on that train for a few stops longer to see a baseball stadium.
On that late April evening in Chicago I crossed another item off my bucket list: taking in a baseball game at Chicago’s Wrigley Field. All made possible because we felt adventurous after eating deep dish pizza.
As I look back on Easter week, starting with Palm Sunday, I’m amazed at how much happened. In the span of two Sundays I spoke five times: twice on Palm Sunday, once on Tuesday, Good Friday, and Easter Sunday. I led a few meetings, including a leadership gathering with about twenty attending.
The Good Friday service had around 250 in attendance as I worked together with a Mandarin translator for the thirty-minute talk. To top off the week I baptized a college student whom Lori and I worked with over the last couple months.
Speaking on Good Friday at Davis Chinese Christian Church with Shirley, my Mandarin translator. Around 250 attended our service this year.
Easter week overall turned out great. True, Lori and I struggled through some roller coaster discussions about issues we face. But by the end of the week we felt much better about most of the concerns.
Unfortunately, though, my skin did not do so well. I’ve enjoyed relatively stable skin. I don’t mind it getting a little worse, then a little better, if I don’t feel the lesions getting too inflexible, large, inflamed, or itchy. But by the end of the week they did all the above—along with a few new friends who popped onto my skin to join them.
Stress (EH blog) is no doubt the key culprit. Here are some ongoing stressful aspects of my life I feel are contributing to my skin flaring:
Upcoming Conference: Besides Easter week responsibilities, I prepared to head out to the HealtheVoices conference in Chicago. The first day I’ll meet with members of “I Know Pso” group sponsored by Janssen Pharmaceutical. The organizers invited me to share about my experience at the American Academy of Dermatology after breakfast. And I thought I had a break from speaking!
Flying: Travel itself stresses me. I’m trying to analyze why I feel anxious on airplanes. I fly quite a bit, but each time I feel my shoulders tighten up, my breath become shallow, and my heart beats just a bit faster than usual. I don’t sleep well the night before either. My wife thinks it’s the anticipation of the trip, which I agree with. But it’s possibly the fear of dying on the plane too—however irrational that might be.
Leaving Family: I don’t like leaving my family either. Lydia continues to recover from her bipolar episode in January. Lori needs to do double duty on driving kids to school, cooking, and housework. I wonder if all the little things I do around the house, like checking doors and lights, will get done. I miss my bed and pets when I travel.
Social Anxiety: Even though I work with the public and people all week, I do a get a bit of social anxiety going to these conferences. It’s another world to me—the world of patient advocacy and healthcare. I need to shift gears quickly to engage a different group on a different level.
Lack of Rest: At this point I’d rather take a day or two to rest rather than dive into a five-day trip. To take these trips for patient/psoriasis advocacy, I usually need to take vacation days from work. To minimize disruption to my work, I work on my day off and on the trip. Sometimes I don’t get a day off for a couple weeks. With a heavy workload and travel, I easily start feeling frazzled.
None of the above is great for my skin and health, but I hope it’s a temporary effect. I hope to keep up my exercise routines at the conference, and keep up with good eating and sleeping habits. I won’t miss a Sharks playoff game either! The time difference allows me to watch in the evening after dinners are finished.