A New Year of Milestones, Including 40 Years with Psoriasis

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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.

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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.

Continue reading →

Why I Hate Asking for Help

This past week the pain in my shoulder landed on the chart somewhere between five and seven out of ten. I injured it in my exuberance to load my daughter’s new bicycle into the back of the CR-V. It’s nothing critical, but annoying enough that I can’t lift at certain angles or rotate in a full range of motion.

The primary impact of this pain in the shoulder is my inability to reach the upper middle part of my back. I normally stretch my arm to apply topical medications and moisturizers to those harder to reach spots. The psoriasis doesn’t pop out there as much, but recently my atopic dermatitis flared everywhere with the cold, winter-like weather here in Northern California.

Each morning and evening when I apply topicals I need to decide whether I will try to reach those spots myself or not.

I’m Going to Do it Myself

My attitude the entire week is to take care of myself—injury or not. In fact, I don’t want, or need, help.  The first couple times I tried to reach my upper back I winced. The next time, after sleeping on that shoulder, I yelped. I exacerbated the injury each time, too, which made me feel stupid and foolish.

One time I felt so much agony that I did ask my wife to apply moisturizer to my back. As she pulled her hand out of the jar of Cetaphil cream I immediately knew she had too much. Decades of applying creams trained me to extract just the right amount of cream or ointment for the skin surface area in question.

As an amateur she could not possibly know how much the skin on my back needed. But that was way too much. I thanked Lori. Then, once she left the room, quickly grabbed a towel to wipe off the excess moisturizer. My skin still felt greasy and uncomfortable after toweling it off a few times.

I determined to not ask her again.

Is There Another Way?

Last night my back became quite itchy with eczema rashes. I longed for a back scratcher but could not find one. I figured the primates at the zoo scratch each other’s backs, so I should at least see if Lori would scratch my back. But, alas, she fell fast asleep on the couch. I desperately needed to improvise.

The thirty-gram tube of hydrocortisone looked enticing. It gave me an extra few inches reach and had a not-too-sharp edge at the bottom. Like Job from the Bible scraping his boils with pottery shards, I soothed the itch on my upper back with that corner edge. Looking around to see if anyone observed my crude scratching technique, I put it down pretending like nothing happened.

My mind them began to brainstorm ways I could put medication and moisturizers on my back. I wondered aloud if anyone invented such a tool, and that if they had not, that maybe I could invent it. I thought, even without an injured shoulder, some people might not have the necessary flexibility and reach.

I’m still working on the perfect invention. If you know of some similar contraption let me know!

My Independent Streak Begins

Hurting my shoulder made it clear to me why I hate asking for help: pride and independence. I help others for a living as a pastor, husband, father, and friend. People message or call me to talk about or help solve problems. Mutual support is okay, but I believe that if you can do something yourself, then you absolutely should.

My streak of independence no doubt comes partly from necessity and parental training. My parents literally worked night and day to make ends meet as immigrants from China/Taiwan. My dad worked as an engineer in the day, then went to my mom’s small retail gift boutique in the evening to help with the family business. Mom worked seven days a week at “the store” for the better part of a decade after I started kindergarten.

As a latchkey kid I largely took care of myself, including applying my own medications. Back then, as an elementary student, I applied mild topical steroids and 2% LCD coal tar in Aquaphor on my psoriasis. My dad even taught me how to order medication by calling the pharmacy, and let me pick them up at the counter as he stood by to pay.

My strong sense of pride also derived from my desire to prove to others and myself that, despite having chronic illnesses, I could achieve great things with minimal support. I pride myself in hard work and perseverance no matter the obstacle. I earned good grades, and later advanced degrees, through consistency and determination.

This bum left shoulder, though, humbles me every time I need to reach those few square inches on my back.

Fine, I’ll Ask for Help

Now I’m determined to stop reinjuring my shoulder by overstretching its current limits. It needs rest, and it needs to heal. So, somewhat less reluctantly, I will ask my wife again for help after I take my shower.

The pain in my shoulder is a metaphor for life. Asking for help often connotes weakness, and no one wants to admit they are weak. Knowing when I need help, however, is true wisdom. Asking for support, while humbling, can lead to the greater good of intimacy through vulnerability. Reciprocity, when not demanded, becomes mutual care.

I also recognize I lose something when I don’t ask for help when I really do need it: the opportunity to connect on a deeper level with others. Sure I can do a lot by myself. But I lose out on sharing moments of triumph and loss, of joy and sorrow, and of journeyingup the tall mountain of life’s challenging peaks with friends who care.

Inspirational Verse: Galatians 6:2

Carry each other’s burdens, and in this way you will fulfill the law of Christ.

I Picked up My Daughter from the Psychiatric Hospital for the First Time on Father’s Day

On June 20, 1995 Lydia’s birth made me a father for the first time. After a long two-day induced labor and delivery, she came out to welcome the world. The nurse prompted me to cut the umbilical cord and then let me hold her–my first act as a newly minted father. I could not wipe the smile off my tired and weary face as I stared into that tiny newborn’s sleepy face.

Lydia Dad Hospital

Lori returned to work ten weeks after giving birth to teach middle school students. I started seminary two months later with taking care of Lydia as one of my primary responsibilities. For the next four years I stayed home with Lydia while I worked toward a Master of Divinity degree. My days filled with studying, changing diapers, feeding bottles, and taking her with me to run errands.

Lydia Dad Home

Little did I know the bonds she and I formed in those early years would prove to be so vital in saving Lydia’s life almost seventeen years later.

Teenage Struggles or Something Else?

During her teen years Lydia experienced ups and downs that seemed typical for her peers. She did well academically and engaged in extra-curriculars like cross-country and service clubs. But she struggled with finding good friends. At home she felt the pressure of being the big sister with two younger siblings. At church parishioners held her to higher expectations as the pastor’s daughter.

Little did I know the bonds she and I formed in those early years would prove to be so vital in saving Lydia’s life almost seventeen years later.

Nothing set off red flags as the teen years certainly present a unique set of challenges for young people.

Then that dreaded red flag went up high in late March 2012. Lydia woke me up one morning before going to school to ask if she could skip school that day. Her eyes looked saucer-like and afraid. Her hands were shaking. I said of course. She then showed me multiple cuts that she had made on her wrists and arms. She expressed her suicidal feelings and need for help.

Up until that morning she mostly kept herself hidden from her family members, often locking her door. She would have kept her desperate situation to herself if it weren’t for one of her friends who convinced her she needed to reach out to us. She ultimately exposed her struggle to me becasue she didn’t want her family to find her in a pool of blood.

Traumatic Break-Up on Good Friday

Easter and Christmas hold a special place in the Christian calendar and at church. As a pastor I look forward to those times of remembrance and celebration. But they happen to be busier times demanding my devoted energy and time. Lydia’s first boyfriend decided to add to the stress of the Easter season that year by breaking up with her on Good Friday.

I never felt as afraid for Lydia as I did that Easter weekend. The previous weeks she started therapy, seeing a psychiatrist, and taking medication. She started to learn better ways to cope than self-harming. That weekend, though, she wanted to cut herself and felt suicidal again. Her psychologist thought we could handle her situation at home, but we needed to make some adjustments to keep her safe.

On Easter Saturday I spent half the night locking away sharp objects and medications. You never know just how many objects in a house can be used to cut until you intentionally search for every last one of them. Hours later, confident Lydia would sleep, I took a nap before heading out to church.

On Sunday, April 8th, I preached the Easter message on two hours rest with a flood of thoughts about Lydia on my mind.

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Lydia and I at the Grand Canyon during our family trip in June, 2009.

Relapse in June

Those next weeks we learned how to better monitor and advocate for her. We went to multiple medical appointments a week around Los Angeles County. Her mood seemed much improved and stable, but then she relapsed in June while on our vacation

On Easter Saturday I spent half the night locking away sharp objects and medications. You never know just how many objects in a house can be used to cut until you intentionally search for every last one of them.

Originally, the family planned a trip to Yellowstone National Park via Las Vegas and Salt Lake City. Due to Lydia’s health we changed plans. Our caring friends in the San Francisco Bay Area, where we previously lived, opened up their unoccupied rental unit for us.

As soon as we arrived I looked for and hid any knives and scissors in the townhouse. I didn’t know at the time, but Lydia beat me to it. She grabbed a large kitchen knife to tuck away in the room she stayed in.

After a week in the Bay Area we started to drive back to Southern California. Instead of driving the four hundred plus miles in a day, we decided to stop in Monterey for a night. Lydia’s two younger siblings noticed cuts on her upper legs and thighs. I also noticed a number of cell phone calls from her phone to locations around the country.

At Fisherman’s Wharf she broke down in tears. A quick dinner near the motel turned into a long evening.  Lydia shared how she had been cutting again, with that knife from the townhouse, and now wanted to burn herself.

At Fisherman’s Wharf she broke down in tears. A quick dinner near the motel turned into a long evening.  Lydia shared how she had been cutting again.

The next day we piled into the minivan in the morning to make the final trek back home. Along the way I called a couple of her health care providers. Her psychologist suggested we take her directly to the emergency room at a local hospital. I thought if I could drive her closer to home the family could use home as a base to care for her. She sat in the back row of the minivan blasting music through her earbuds to ward off the voices in her head.

We finally arrived at our destination, Kaiser Baldwin Park Hospital, to meet my parents and dog, Teddy. My parents took the younger two children home while Lori and I stayed with Lydia at the hospital. Later that evening an ambulance transported her to to a psychiatric hospital in Cerritos, about 25 minutes drive away.

First Timer in the Psychiatric Hospital

She stayed in the psychiatric hospital for about six days in the adolescent ward. During that time we visited her every day during visiting hours, often battling LA commute traffic. We cleaned up her room, and gathered up several pairs of sharp scissors that had fallen behind her bed.

We didn’t tell the church or many friends about Lydia’s condition. We wanted to protect Lydia’s privacy first and foremost. In her mental state at the time she could not make a sound decision about whom to tell or not tell. We also didn’t know how others might react to her condition. Stigma related to mental illness continues today as back when Lydia first learned of her mood disorder.

On Saturday, June 16, 2012 we learned she would be discharged the next day, Father’s Day, in the afternoon. To not raise any undue concern or alarm at church I decided to continue with my morning duties. I preached the Father’s Day message that morning without anyone but my family knowing about Lydia’s hospitalization.

On Saturday, June 16, 2012 we learned she would be discharged the next day, Father’s Day, in the afternoon.

The family went to pick her up directly from church. Lydia gave me a big hug when we first arrived. After receiving discharge paperwork and directions we took our baby home from the hospital just as we had done seventeen years before.

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The two of us travelled to Chicago together when I attended the HealtheVoices conference in April. It was her first time at Chicago’s O’Hare airport.

Bipolar Type 1 Diagnosis

That week after discharge Lydia’s psychiatrist confirmed her diagnosis: Bipolar Disorder I w/Psychosis. These past six years I’ve learned more about bipolar disorder and fathering than all the previous years combined. The continuing story of Lydia’s battle with bipolar is for another day.

For today, though, on this Father’s Day, I remember when I brought Lydia home from the hospital both twenty-three and six years ago. I thank God for His mercy and protection over our lives and feel confident that He will continue to watch over Lydia in the days ahead.

Lydia will enroll in the University of California, Davis in the fall to study psychology and animal behavior. Check out her blog Sincerelydia to learn more about her life and mental health journey.

How My Wife and I Support Each Other Through Chronic Illness

Howard Chang and his wife Lori found that being open about their chronic conditions brought them closer together.

Lori and I took this picture at the spot we got engaged in 1993 near Ghiradelli Square in San Francisco. It’s one of my favorite recent pictures of us together.

Happy Valentine’s Day to my dear wife, Lori! I can’t believe we met about 25 years ago at U.C. Davis as undergraduates. We bonded very quickly over the experiences of living with lifelong health condtions. Those health conditions persist to this day, with a few added to the picture as we become middle-aged. I would even say that psoriasis helped me find my wife

I wrote the following article for The Itch to Beat Psoriasis on Everyday Health a couple years ago on ways to support a loved one with chronic illness. I’m adding it here below as a reminder on Valentine’s Day of how far we have come through each other’s support and care.

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3 Ways to Support a Loved One With Chronic Illness

Finding the perfect gift for my wife, Lori, is always tricky. That’s because it’s not easy to express how much she means to me. She’s stood by as my main support through everything for more than 20 years, including living with a guy who has severe psoriasis.

As a minister, I officiate weddings and work closely with couples preparing for marriage. I always tell them that the center of the ceremony is the vows. The vow to love “in sickness and in health until death do us part” strikes me as especially solemn.

Many young couples sitting across from me do not truly comprehend the impact “in sickness” can have on their future lives. I know that Lori and I didn’t when we married in our early- and mid-twenties.

We hit it off immediately when we met as college students at the University of California, Davis. The two of us could speak for hours about anything and everything. We could especially relate on so many levels when talking about living with serious health conditions.

Lori was born with spina bifida, a neural tube defect that leaves the spinal cord and nerves open to damage. Doctors call hers a one-in-a-million case thanks to successful neurosurgery a few hours after birth. The condition did leave her with incontinence and neuromuscular weakness, but it could’ve left her incapacitated in a wheelchair.

The two of us could speak for hours about anything and everything. We could especially relate on so many levels when talking about living with serious health conditions.

Every year, I accompanied Lori to an all-morning spina bifida clinic. She stayed in an exam room while medical providers from nine different specialities, including neurology, urology, and nursing, checked her. After lunch, they discussed the patient’s condition and gave recommendations for follow-up.

During one visit, her worsening incontinence took center stage. The doctors and nurses couldn’t find a solution, suggesting possible surgery. I felt helpless as I witnessed her daily struggle trying to work and be a mom while emotionally frustrated by her condition. It took years to figure out how to best manage the incontinence, though no surgery was necessary.

My psoriasis also posed its challenges for Lori. She didn’t really understand or have much knowledge about the condition when we met, or during the early years of our marriage.

Lori admits she thought it was just a manageable itchy rash … nothing much to worry about. It would flare up at times, but there was oral medication, topical treatments, and dermatology appointments to get through it. Besides, Lori’s mom was facing terminal cancer, and the ensuing family drama after her death definitely took priority.

On the journey, Lori and I learned how to better support each other while managing our own anxieties, fears, and frustrations. Drawing from our experience, we brainstormed a few tips for people in support roles as they care for the most important people in their lives. Continue reading →

The Super Blue Blood Moon

The awe-inspiring lunar eclipse this morning from the backyard of our house near Sacramento in Northern California.

I set the alarm for 4:30 a.m. this morning to catch the rare super blue blood moon. A super moon happens when the moon in particularly close to the earth. A blue moon is a second full moon of a calendar month, January. A reddish blood moon comes when the moon is in the earth’s shadow during the eclipse. It’s rare for all three to happen at the same time.

When I heard that the West Coast would provide some of the best views I set my mind to wake up to see it. Little did I know that my son stayed up to catch the whole -rogression from partial eclipse to totality. By 5:15 a.m. the entire family stood in the sub 40 degree cold to look up at the sky to see a sight not seen since 1866.

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My son used an iPhone camera in the eyepiece of our Celestron telescope to take the photos. We defintely need a better set-up for photos, but the pictures still looked amazing. Here’s a picture of the partial eclipse. Continue reading →