Advocacy, psoriasis

Joining NPF on Capitol Hill

Lori and I in Sacramento for California Advocacy Day with the National Psoriasis Foundation in 2017. The NPF produced this graphic for a tweet promoting the upcoming Capitol Hill day on March 20, 2018.

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Last year I very much looked forward to attending the National Psoriasis Foundation’s Capitol Hill Day in the nation’s capital. Alas, due to inclement weather and subsequent flight cancellations, I didn’t make it. I wrote Not Going to DC After All, But . . . to share my sadness. While I did conference call into a couple of congressional meetings, I missed meeting psoriasis patient and research advocates, as well as congressional staffers, in person.

This year I’m hoping the storms hold off long enough for my flight to land at Ronald Reagan National Airport on Sunday evening. If they do I’ll not only check off another item off of my psoriasis bucket list, but also join in a cause I’ve become increasingly passionate about.

Growing in Psoriasis Advocacy

For years I envisioned myself as a volunteer coordinator for building psoriasis community locally. I joined the NPFs Los Angeles community division a decade ago and started the San Gabriel Psoriasis Support Group meeting at a local Kaiser facility. Although that group did not continue after I moved back to Northern California, I felt the monthly gathering made an impact.

In Northern California the NPF Community Division Manager gave me the vision of establishing a group in the Sacramento area. We hosted More Than Skin Deep and Team NPF Walk events over the past few years. However, during this time I felt the tug to focus more time on writing blogs and on local advocacy.

I attended the first advocacy day in Sacramento a few years ago where the NPF teamed up with the Arthritis Foundation and other groups to support state legislation. Some bills we lobbied for included striking down step therapy, promoting continuation of care, and developing standards for biosimilars.

Before one of the California Advocacy days the NPF called to ask me to represent the organization in support of a bill. I took off a morning from work to sit in on a health committee meeting. I waited for my moment to stand in line and express support for the bill. That day the NPF staffer told me I became a lobbyist.

Recently I joined the NPF’s Western Advocacy Action Network representing California. Next week I’m taking my very amateur lobbyist skills to Washington D.C. for the first time. I didn’t expect to become involved to this level in legislative advocacy, but I see the power of influencing government for the greater good of the patient community.

Travel and Psocial Ambassador Training

Getting to D.C. is a daunting proposition, however. Living on the West Coast has a few disadvantages. One of them is traveling to the East Coast for meetings. Since my first meetings with the NPF Psocial Ambassador group starts at noon on Monday morning, I need to travel on Sunday afternoon.

With speaking at 9 a.m. and teaching a class at 10:30 a.m. at church, the best flight out of Sacramento for me is in the early afternoon. I already know I will be exhausted with the packing, preparation for the lessons, speaking/teaching, and travel through Chicago’s O’Hare airport. I don’t arrive in D.C. until around 11:45 p.m.

Sunday is my big work day that takes everything out of me. Traveling and two days of meetings will be challenging, especially with the time change.

But it’s worth it. I can’t think of a better way to spend those couple days giving myself to a cause I deeply believe in. I’m also looking forward to meeting the other two dozen plus patient advocates who will attend.

I plan to update how things are going during and after the trip. Definitely looking forward to all those couple days have in store for the Foundation and me.

psoriasis, Psoriasis Treatments

28 Weeks with Tremfya: Still Working? (Injection #5)

March 5th finally arrived–injection day. The time came for the fifth dose of Tremfya (guselkumab) twenty-eight weeks after starting this treatment journey with it in August.

To prepare I carefully laid out the syringe, the instruction booklet, information sheet, a cotton ball, and alcohol wipe on my desk. As I waited for the medication to warm up for a few minutes my thoughts began to wander.

Would I take Tremfya if my insurance didn’t pay for the approximately ten thousand dollars per injection?

Is there any chance for even greater improvement as I go into the second half of a year taking it?

Will any long-term side effects eventually pop up if I take Tremfya over a long period?

As I grabbed the syringe I figured the answers are 1) no–it’s way too expensive, 2) probably not–I’ve probably seen what it can do already, and 3) I hope not–and that scares me to these three questions. I submitted to the fact that I can’t know everything I want to know about taking a new medication even after using it for over half a year.

Thankfully, the needle and medication went under my skin with no issues. Not even a tiny drop of blood emerged as the needle pulled out. Now it’s time to wait to see how effective this injection will be for weeks 28 to 36, and would it follow the pattern I’ve observed with the past couple injections.

The Pattern Continues

In 24 Weeks with Tremfya: A Pattern Emerges I discussed a pattern I observed with the eight week between injections. About two weeks before the next injection my psoriasis worsens. Then two weeks after the injection my psoriasis begins to improve again. I most enjoy the four weeks in between.

During the previous eight weeks I did have a nagging respiratory injection that seemed to worsen both my psoriasis and atopic dermatitis. While it’s possible the break out is due to the lingering effects of infection, I also see it as a potential confirmation of the pattern I described.

This picture I took earlier this week shows how my psoriasis broke out some on my lower back and upper arms. Continue reading →

psoriasis

Traveling with Psoriasis

[The view from The Getty Center in Los Angeles, June 2017]

I originally wrote this article for The Itch to Beat Psoriasis on Everyday Health. The editor needed to cut it down by almost half. My enthusiasm for travel apparently could not be contained in under 1000 words. So, I have the full, original article here.

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Last summer my family and I took a weeklong vacation to South Dakota to see the Badlands and Mount Rushmore. Besides waking the family up for the early morning flight, everything went according to plan. We went to lunch in downtown Rapid City, SD to pass the time before checking into the hotel. Then it dawned on me—I forgot my injectable biologic to treat my psoriasis in my backpack in the trunk of the rental car.

I immediately panicked, knowing that it would keep in room temperatures for a couple weeks, but not in a heated car in summer. We ran back to the car, and pulled out my backpack in a desperate attempt to save my medication. Sadly, it was too late—it felt as hot as the air in the car. After a quick call to the medication’s manufacturer I learned I couldn’t use it any longer.

Last summer’s trip to South Dakota at the Badlands National Park. Unfortunately, I fried my biologic on the first day of this trip, but my skin mostly stayed under control.

In the end that incident didn’t ruin my trip or affect my skin adversely. I took it as a learning experience to not give up on travel, but to continue to refine how I travel. Even after making mistakes like at last summer’s vacation, I still look forward to traveling. Psoriasis need not take those opportunities away from me to see the world.

I do recognize, however, that traveling with a chronic condition like psoriasis takes special preparation and planning. The key principle I apply when traveling is to think about what I do at home for my psoriasis. Then, I take as much of what I do in my daily routine with me on the trip. What works at home often works on the road with some modification.

Scouring online I found some great articles on the topic of traveling with psoriasis in general, including 7 Tips for Traveling with Psoriasis here on Everyday Health. I keep those in mind as I share the process of what I do when traveling.

Preparing for an Upcoming Trip

A successful trip begins with preparation and packing. My before-the-trip routine begin with arranged travel plans so I know where I will be and when, including how I will get there. Once I know the destination and arrangements, I go through a checklist in my mind to make sure I have everything I need for the duration of the trip.

Prioritize Prescription Medications

I put top priority on packing enough of my prescription medication. I often can purchase over the counter items, or even clothes when I’m out of town, but it’s harder to replace my prescriptions. I do carry the number to call if I need medical care outside of my home area. But even if I can replace them, I don’t want to take the time out to do so if I don’t have to.

The last time I traveled to Chicago for a conference I prepared as usual. But the morning of the trip I forgot one of my prescription topical medications on the bathroom counter. Providentially, I keep travel size tubes of the same medication in my backpack. That tube contained just enough medication for the trip.

Redundancy in packing medications is one way I prioritize them when I travel with psoriasis. That in turn means I need to have enough on hand to pack for the trip. Going over my travel plans with my doctor before the trip, ordering prescription refills, and calling my insurance provider to find out what to do if I lose my prescription medication ensures I have what I need as I leave my home base.

Review Daily Routines

When I’m packing, I go over my daily routines from morning to night. In the morning, I use a topical medication, take a pill, and apply moisturizers. Those items go on a packing list. I do the same for the afternoon, evening, showering, and bedtime routines. By going over the daily routine I make sure have what I’ll need for each day.

Store Travel Ready Items

Over many trips, I’ve collected travel size containers, samples, and items that I set aside in a medication tub. Only the items on my list make it in the tub. Before each trip, I replenish medications and toiletries I need for the length of the trip. That tub minimizes the potential for forgetting an essential item, and easily packs in my suitcase.

Pack Everything Needed

I used to worry about over packing. Once I traveled with a friend to Europe to speak at a conference. I packed a large duffle bag with all my medications, moisturizers, and sets of clothes. My friend didn’t need to pack as much. He criticized how much I packed, primarily concerned that those driving us mainly have small cars. I explained to him that I need it to take care of my skin.

I don’t bring huge suitcases for an overnight trip, but at the same time I don’t worry about what others think, or make myself travel with a small bag. If it’s a longer trip, I pack larger moisturizer containers and whatever else I need to feel comfortable. I pack what I need, even if it costs more in luggage fees.

On the Magnificent Mile in Chicago I found a very tall Abraham Lincoln to take a picture with.

During a Trip

When the trip starts, I need to keep focused on my health maintenance. It’s easy to get caught up in the conference I’m attending, or the national park I’m visiting. But taking the time to manage my health is just as important during travel.

Minimize Vacation/Travel Stress

My family growing up stuck to early starts and long days on vacations. We packed in all we could do each day, wanting to maximize the time and opportunities on the trip. I found vacations more stressful than staying home.

I know stress is a part of travel, but I try to minimize the stress as much as possible as it’s also a trigger for my psoriasis. When I plan a vacation, I schedule rest and late starts whenever possible. Packing early and getting to the airport in plenty of time also minimizes anxiety. I practice mindfulness, prayer, and deep breathing whenever I need to calm down.

Keeping those home routines helps me with stress management as well. On my last trip, I committed to exercise in the hotel gym. Two of the four nights I ran on the treadmill. Instead of staying out longer with new friends, I kept to my regular bedtime. Breaks during the day helped me stay focused and healthy.

Communicate Special Accommodations

A key to a successful trip for me is letting people know my needs and accommodations. If I’m staying at a hotel, I call ahead to ask if they use any cleaning products or fragrances that might irritate me. I also ask about hypoallergenic options for bedding.

From time to time I stay with friends or hosts. I struggled in the past to tell them I need hypoallergenic laundry detergent on bed sheets, or explain that I need a separate bathroom with around 45 minutes to get ready. I’ve found most people understand once I explain my situation.

Moisturize Skin on the Go

I used to wonder why my skin seemed to feel worse on flights. I soon realized that the dry air in the cabin dried out and irritated my skin. I now take a small container of moisturizer with me to use periodically on travel days. I also hydrate as much as possible on planes.

Moisturizing becomes especially important in hot, dry climates. When I visit my parents in Southern California, sometimes the dry Santa Ana winds create low relative humidity. Checking weather reports provides important information for how much skin moisturizing might be needed.

Look Out for Psoriasis Triggers

The National Psoriasis Foundation (NPF), in the article “Causes and Triggers,” states that “Psoriasis triggers are not universal. What may cause one person’s psoriasis to become active, may not affect another.” It’s important, then, to know your psoriasis triggers and try to avoid them—especially while traveling.

Some universal triggers the NPF mentions include stress, injury to skin, and infection. To prevent these and other triggers I apply sunscreen in sunny environments, wash my hands to prevent infections, and protect my skin from damage such as bug bites, or getting scratched.

Mentally Prepare for Onlookers

Summertime is a peak travel time. While I love going to the beach, or taking the kids to an amusement park, I don’t like exposing psoriatic skin in those situations. One spring my daughter and I took a cruise to the Panama Canal with my parents as a relief from the stress of ineffective psoriasis treatments. I needed the break away and the warm climate during the winter, but I was over ninety percent covered in lesions. It took some courage, but I went out on the deck anyhow to relax and catch some sunlight.

Over the years, I’ve learned to ignore people who stare, or ready what I’ll say if they ask about my skin. Explaining it’s not contagious, and it’s an autoimmune condition, helps me feel empowered, and educates others in the process.

My daughters and I drove into San Francisco to take in the National Psoriasis Foundation Walk and do some shopping. One of my favorite cities in the world, and near where I grew up.

After the Trip Ends

When a trip ends, I tend to experience mixed feelings. I’m glad to be home where I can sleep in my own bed and resume my normal routines. At the same time, I miss the adventure of traveling. I might also need follow-up care for my skin.

The last time I went to a five-day conference my skin did not do well at all. Despite my best intentions and planning, something triggered a flare. The time and effort to calm the flare was an unfortunate consequence of travel, but one I know might occur. Checking in with my doctor, taking inventory of skin care supplies, and allowing for a low-key reentry into daily life also become part of my routine after a trip.

The trip to South Dakota fulfilled part of a bucket list item to visit the all national parks in the United States. I’ve traveled to Africa, Asia, Europe, Central America, and various parts of the country. So much of the world lies unseen and unvisited for me. Traveling gives me opportunities to meet new people, see old friends, appreciate natural beauty, and experience different cultures.

The memories I make on those trips make the extra effort to care for my psoriasis on them all worth it.

On the Los Angeles trip we also visited the California Science Center where the Space Shuttle Endeavour resides. The family voted this part of the trip as one of the best moments of the week.

For some great specific tips on international travel, see International Travel with Psoriasis.

PsoHoward