Category Archives: psoriasis

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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psoriasis, Psoriasis Treatments

Insurance Request Denied for Otezla

Today I found out that insurance denied my dermatologist’s prescription for Otezla (apremilast). With so many days passing before hearing I assumed the scrip ran into issues. So, I messaged my doctor to find out what happened over the past ten days.  The dermatology office will appeal the denial, which can take up to 30 days–though I’m told that most likely we will hear back earlier.

How do I feel about the insurance denial? I thought I might feel upset and angry, but I mostly shrugged it off. This insurance company, at least the prescription medication provider, is no doubt accomplishing their goal of wearing me down. They are already in my head. As soon as I received the prescription my first thought turned to whether insurance would approve it. I’m saddened that I would think that first.

Besides indifferent and somewhat sad, I feel mostly tired. For a long time, I’ve preached having a good working partnership with health care providers. I practice what I preach. I can talk to my dermatologist just about anytime about anything. We work closely together to decide on my treatment plan. That’s now not the problem.

How do I have a good relationship with the pharmacy benefits company my insurance contracts?

These issues really are new to me the past few years. From the time of my diagnosis until I took this new job in 2014. I was with Kaiser Permanente. I didn’t deal with insurance issues directly—it seemed if the doctor ordered something, I wouldn’t question if I would get it. Phototherapy, biologics, pills, and procedures were all covered.

I’m not looking forward to the next few days. It feels like each time I call I talk to a different person. All the same, I’m building up the courage to make phone calls to the insurance company this week. When they wanted to deny my Enbrel twice a week—claiming a once a week step down protocol that didn’t work for me—I pushed back hard. I overturned that denial with persistence, clear reasoning, and a calm approach.

Praying that I can keep that same calm, figure out what’s going on, and help the process along. I don’t have to have this exact medication. But I do need to feel some security and confidence that I can reasonably have access to what my doctor and I think are best for my psoriasis and health.

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