Tag Archives: psoriasis support

Living with Psoriasis, psoriasis

The Science of Skin: A Journey of Hope and Home

This post, and my travel to the event, was sponsored by AbbVie Inc. Personal opinions and thoughts are my own.

Standing next to my poster at The Science of Skin, NYC

I rushed into the Whitby Hotel in New York City feeling late to The Science of Skin educational event. The stress of navigating a new city amped up my heart rate. I had traveled across the country and didn’t want to miss a beat. 

As I descended the stairs to The Reading Room, I felt transported to a familiar space. I first saw a picture of myself on a poster with a quotation about why I started blogging about psoriasis. Walking in further, I greeted new and old friends.

Indeed, The Reading Room became a special place for those few hours. I might characterize it as a safe place, but it was more than that. I not only learned from doctors and heard fellow patients transparently share their experiences with chronic skin conditions, but I also reflected on my own psoriasis journey.

A Student’s Attitude Toward Psoriasis

Since my diagnosis, my understanding of psoriasis has grown as I have taken the initiative to learn and read about the disease, its causes and the treatment landscape. I don’t claim to know it all, as information and treatments continue to evolve, so I always look forward to opportunities to be a student of psoriasis, which this event afforded.

The Whitby Hotel Reading Room, NYC

During the panel discussion about psoriasis, I recalled instances of people who told me flatly that psoriasis is just a rash. Over 40 years of living with this disease, I’ve seen the science prove them wrong. Now we know that psoriasis is a chronic disease linked to many factors, including an overactive immune system.

When I see those red plaques and lesions on my skin, I now know I’m seeing inflammation that is forcing my body to produce skin cells at a much faster rate than normal. Instead of a 28-day skin cycle, psoriatic skin produces new skin cells in a four to five-day cycle. That faster skin production leads to thickening of the skin as cells build up on the surface. Those skin cells then become the flaky scales and plaques that get all over my bedsheets, clothes, and floor.

In addition to discussing the science behind psoriasis, the dermatologists at the event also addressed other areas of psoriasis research. One even talked about how knowledge gained from developing psoriasis treatments is now helping researchers to develop treatments for other conditions. 

Coming to Terms, Again, With Psoriasis’s Impact on My Life

The Science of Skin event turned out to be more than just a scientific presentation of psoriasis and other chronic skin conditions, but rather, a look at the whole person. The discussions helped me realize that I’m not always as willing to acknowledge the deep impact of the disease on my daily life as I think I am.

I usually wonder if my skin will worsen with the stress of travel. This time I did feel a bit of skin discomfort, but when people asked how I was doing I quickly said “fine.” When speakers started talking about the isolation and shame that some living with chronic skin conditions can experience, I felt challenged once again to stop hiding the impact of psoriasis on my life.

Wonderful seeing Nitika Chopra who presented her experience with psoriasis

A survey conducted by the National Psoriasis Foundation that found 87% of psoriasis patients feel helpless and embarrassed, and 88% believe that psoriasis affects their overall emotional wellbeing, really resonated with me. Psoriasis has never been just skin deep for me, and now I have stats to back it up. The presenters emphasized the physical, psychological, emotional, and social impacts that can come with a visible skin condition—all of which I can attest to in my own experience. 

At the same time, I was glad to hear one dermatologist’s observation of how the psoriasis patient community’s mood has turned more positive as more effective treatments have become available. I’ve experienced that transformation in my life, and the last decade has been the most productive for my advocacy, work, and education. I didn’t settle for “good enough” and asked for more when it came to my psoriasis care. 

Now I want other patients to feel empowered to have an honest discussion with their dermatologists about their treatment goals for achieving clearer skin. As I grew in sharing with my dermatologists how I’m really feeling and thinking, I found myself more involved and satisfied with the decisions that were made for my psoriasis care.

As The Science of Skin event ended, I looked back at The Reading Room one last time.  The event marked a moment where I felt hope again for people living with psoriasis. I confidently stepped back into the city feeling that I could move forward in my journey with psoriasis as I turned toward home.

Disclosure: This post, and my travel to the event, was sponsored by AbbVie Inc., a biopharmaceutical company, and should not be construed to constitute medical advice. Personal opinions and thoughts are my own. I am not a medical professional and am not qualified to give medical advice. Please talk with your doctor about your individual medical situation. 

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Family, Living with Psoriasis

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.

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psoriasis

One Way to Bypass Insurance Denials

Today I still do not have a home phototherapy unit. Almost five months ago my doctor prescribed one for me. Sadly, explanations and appeals made no inroads with my health insurance provider. I documented the insurance saga with Western Health Advantage (WHA) in a recent post. In sum, they denied coverage, my dermatologist and I appealed, and they denied the appeal of the denial. Simple.

The next step to procure a home phototherapy unit would need to bypass insurance coverage.

On the Lookout for Used Phototherapy Units

The dermatologist who originally prescribed the phototherapy unit suggests I search on Ebay or Craigslist for a used unit. Although I did not like the idea at first, I dutifully began looking online for deals. Nothing popped up that I felt I could trust. Besides, I still felt too frustrated about not getting the new unit I set my heart on that I searched half-heartedly.

Then a kind soul emailed me that they read my blog and wanted to offer me their used unit. I began to research the unit to see if it would be a good fit. After consulting my dermatologist it looked like it would need new bulbs that might not fit the older unit. I would need to do more investigating. [If you are interested in their unit please notify me.]

I resigned myself to dip into savings or ask my parents for the money needed for new narrowband ultraviolet bulbs (NUVB) for the used unit, or a stripped down new unit with four or six  bulbs. Even so, I still dreamed of the ten bulb unit with a center and side panels that cost around four thousand dollars after tax and shipping.

A “Go Fund Me” Surprise

A couple months back in the midst of processing a FedEx delivered rejection letter I joked with Lori that I would start a Go Fund Me campaign. I’d never started one, and had only heard about it. My upset did lead me to think of ways to purchase the phototherapy unit apart from insurance. But I did not feel comfortable asking others to give toward it. My pride didn’t let me really consider it.

At a dinner recently I shared my frustration regarding the insurance denials with a couple. I knew they cared about my struggles with psoriasis and didn’t mind listening. We enjoyed an evening out talking and catching up about recent life events. In passing, I joked about the Go Fund Me campaign.

That evening I received a surprise email asking me if it would be okay to send a Go Fund Me campaign to people we knew. They took my picture from social media and set it up. I only needed to give them the green light and check the information on the description before launching it.

If someone who cared about my condition wanted to help me raise money for a phototherapy unit I didn’t want to discourage them. They titled the Go Fund Me campaign “Medical Treatment Fundraiser for PH.” (At church they call me “PH” for Pastor Howard.) The gesture really touched my heart:

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So far the campaign has raised over 70% of the cost of the unit my doctor prescribed. I will soon purchase that unit after giving it a little more time.

Encouraging Support

I am still grateful for my health insurance provider. I will not forget the quarter of a million cost to them for my son’s three week hospital stay. Or for covering my biologics and specialist visits. But this situation with the home phototherapy unit taught me that I cannot expect insurance to cover everything I need for my medical care–even though I argue they have an obligation to.

Instead, I’m touched by the love and generosity of those who started the campaign on my behalf and others who reached out to me with words of support. I’m also grateful for the friends, church members, family, and others who gave in the first couple weeks of the campaign. Their gifts small or large encouraged me enormously when I felt down about my state of psoriasis activity and treatment.

I still need phototherapy treatment on top of topical ointments, biologic injections, and small doses of cyclosporine pills. It’s a lot of disease activity to address, and I know I can’t do it alone. The Go Fund Me campaign reminded me that I’m definitely not alone. People are praying for me, willing to support me generously, and care about my well being.

One way to bypass insurance denials for treatment? Have a friend invite a community of friends and family to pray and contribute as they feel led to.

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Family

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 →

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