Tag Archives: Family

psoriasis, Psoriasis Treatments

One Year with Tremfya: Can’t Get Enough!

IMG_1095

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.

IMG_1216

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 →

Standard
psoriasis, Travel

My Surprise Visit to Wrigley Field

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.

Read about My Painful Memories of Living with Psoriasis as a Teenager on my column The Itch to Beat Psoriasis at Everyday Health

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.

FullSizeRender-3.jpeg

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.

IMG_9186IMG_9184

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.

IMG_9189.jpg

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.

IMG_9194

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.

IMG_9196

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 Wrigley describes 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.

IMG_9192

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.

Standard
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.

FullSizeRender.jpg

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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Standard