Author Archives: Howard H Chang

Personal Faith, psoriasis

Great Easter Week—My Skin Not So Much

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.

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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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Personal Faith, psoriasis

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.

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psoriasis, Psoriasis Treatments

The Frustrating Road: Appealing the Insurance Denial

As I wrote in Insurance Request Denied for Otezla, I heard first from my dermatologist of the denial. The next day I received a letter detailing the denial. The crux of their argument for denial is that I’m already taking Enbrel (etanercept), a biologic, and no studies exist to show the efficacy of taking Enbrel and Otezla (apremilast).

I honestly didn’t expect too many studies of people taking Enbrel and Otezla. Otezla is only FDA approved recently. I understand many people with psoriasis would not need to take two high costing medications to treat their condition. Unfortunately, I am that person who needs a combination of therapies to even keep me at the high-level of moderate to low-level of severe. Forget about clearance or near-clearance.

Last week I finally conjured up the courage to call my insurance provider about the Otezla denial. Right away I knew why I procrastinated.

The call did not get off to a good start. She asked me my identifying information, which I gave all except my state. I figured this is a small HMO that is local, so California would be assumed. She told me twice that it was needed to identify me in their records. I felt annoyed already.

I learned quickly that my provider already filed an appeal on my behalf, so the call was essentially useless. I told her that I still wanted my perspective to be heard by the insurance medical reviewer. She told me that my perspective didn’t matter, only whether or not the medications prescribed are medically necessary.

More frustration. Some angry words exchanged. Then silent typing for five minutes.

I felt disoriented during the silence. Was she documenting my upset? Would I be denied insurance later if I pushed too hard for this medication? She assured me that wouldn’t be the case, that she only needed to document what happened on the call.

My condition, I reasoned, needs two medications to overlap. If the old one is stopped too quickly, the new one might not be strong enough to suppress the inevitable flare. I hope to only be on one medication eventually, but that takes time. More typing and silence.

I trust she took down what I wrote for the medical reviewer. But why couldn’t I share my experience and thoughts of my own medical care in the first place? I never did get a straight answer on that question.

Now it’s time to wait some more, up to 30 days. I’m starting to not even want to try this medication if it’s so much trouble!

 

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Living with Psoriasis, psoriasis

Exercising Again & My Heart Loves It

My running shoes started getting more use recently with interval workouts in the neighborhood.

Since around Thanksgiving I started exercising regularly again. That’s when I bought my first Apple Watch with great workout tracking features, including GPS. I never liked running with my phone. A sad excuse for not exercising.

I hate to admit that I let my body go with bad health habits. I didn’t just stop exercising regularly, I slept too late and too little, and ate too much fast and junk food. Over time I noticed the effects–rising blood pressure, weight gain, moodiness, lack of energy, and disliking myself.

I’m still not sure if psoriasis improves with exercise, as I used to be fit while still with flaring psoriasis. But when I went to the AAD medical meeting, I received a healthy dose of motivation to revive healthy habits. I’m at the age where my heart and overall health starts to go, and psoriasis doesn’t help with the attendant inflammation. More and more studies show the impact of severe psoriasis on lifespan too–up to five years. That’s sobering.

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Apple Watch Activity Levels March 2017

After the AAD meeting I started running intervals about every other day. Not soon after, my daughter Lydia started running intervals with me. On off days I go for a walk, use the rowing machine at a slow pace for about 20 minutes, or take a rest day.

The screen shot shows my Apple Watch Activity levels for March 2017–closed circles show progress and daily goals reached. The outer circle measures calories burned (current goal 500 calories), the middle exercise minutes (set by Apple for 30 minutes), and the inner circle highlights hours standing with a daily goal of 12 hours. Overall it’s the best month I’ve had, with 15 workouts recorded.

Here’s the interval workout routine:

  1. Stretch and use inhaler (for asthma)
  2. Slow jog one minute, then fast walk for a minute and a half
  3. Start around 9-10 intervals of running for one minute (~6:30-7:30 min/mile pace), then resting for 1:30-2:00
  4. Cool down with final slow jog, 5-10 minute walk, and stretching

Overall the workout takes about 35 minutes–up to an hour with stretching and walking.

I now sleep with my Apple Watch and can look at my sleeping habits and quality. My resting heart rate is the best sign that my workouts are improving my heart health. Over the past month it dropped ten beats per minute. My blood pressure also dropped down into normal range.

My body and heart love the exercise–and just maybe I’ll need less medication to control my psoriasis too if there’s less inflammation in my body overall. That’s the hope.

For more on exercise and psoriasis, check out my recent Everyday Health column Get Off the Couch! Exercise Can Help Your Psoriasis. 

 

 

 

 

 

 

 

 

 

 

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