I Went to the GSK Lupus Summit and All I Got Was a New Lupus Community. Wait, What?

They say if you know one person with lupus, you know one person with lupus. I’ve known this factCarie Sherman for a while. But the GlaxoSmithKline (GSK) 2015 Lupus Summit in Philadelphia proved to me that only lupus could pull together this crowd.

And what a crowd it was. I sat amongst lupus blogger royalty. These rockstars are living with lupus and showing the world how to thrive with a chronic illness. Different perspectives, different methods, same goal: To spread lupus awareness wherever they go. I’ll list links to their blogs at the end of this post so you can connect with them as well.

Meeting the GSK Team

The day started with a presentation from GSK—the one where they try shaking the image of the Big Bad Pharmaceutical company. I worked in corporate communications for a decade in an industry also labeled big and bad, so I had an idea of how it would go. I also knew, judging by the tenure of the employees in the room and the genuine way they communicated with us, that their team is proud of the company they work for, which goes a long way in my book. In fact, a rep from their patient advocacy arm has lupus—and just had a healthy baby. How cool is that?

Survey Data Illustrates Life with Lupus

Next, we were presented with data from a world-wide lupus survey, in which they looked at the perspectives of patients, caregivers, and providers. These findings stood out most for me:

  • Symptoms. 61 percent of lupus patients minimized their symptoms to their physician.
  • Career. More than half of patients and caregivers indicated lupus impacted the patient’s career progression (interestingly, only 25 percent of physicians reported this).
  • Severity. While patients say they experience a large number of lupus symptoms daily, physicians believe patients only experience most symptoms several times a month.
  • Financial. Nearly three-quarters of patients (75 percent) and caregivers (72 percent) agree that lupus is a financial burden, yet physicians say about one-third of their patients (34 percent) report this effect to them. (I can attest to this! My labs have been stable for two years, but I still see my doc every three months. I have insurance, and the labs they take at each appointment still cost nearly $250. And don’t forget my $60 co-pay.)
  • Communication. About three-quarters of physicians (76 percent) believe their patients have difficulty communicating their support needs to others.
  • Doctor visits. Now, I find this weird. 83 percent of physicians report seeing patients every two to three months compared to only 63 percent of patients and 68 percent of caregivers reporting this frequency of consultations. Surely this can’t all be attributed to brain fog.

View more findings here.

New Resources Help You Become a Better Advocate for Your Health

The survey makes clear that it’s on us to be better communicators and better advocates for our health. But how?

Enter GSK again. I think it’s cool that the only drug manufacturer to come out with a new drug for lupus in the last 50 years is also concerned with helping lupus patients manage their illness. Check out these resources they developed:

  1. This lupus checklist allows you to record your symptoms, which can help you—and your doctor—better understand how you feel.
  2. Do you keep a journal? This one is designed just for people with lupus. You can customize it and use it to document not only your symptoms, but your thoughts and feelings as well.
  3. Mobile more your style? There’s an app! The My Lupus Log is an easy way to track your symptoms and record how they impact your daily life.

My GSK Lupus Summit Aha Moment

As I scanned the room, one thing became clear: This group of women should have never met. Me, a farm kid from Iowa, hanging with a poet from NYC and a patient advocate from LA and a nurse from Philly…you get the drift.

So what struck me most? Every person in that room had reasons to feel sorry for themselves. Could things be worse? Sure. Could things be better? Oh hell yes. It sucks to be so young and feel pressured from your doc to have a baby or worse yet, face some really tough, permanent decisions surrounding your fertility. It’s so sad that one patient planned her funeral at age 18, and it’s terrible that the disability system designed to help people in these situations is so difficult to navigate.

The GSK Lupus Summit could have easily turned into a sob-fest. Yet every conversation shined with the strength of character, will, and spirit of these women. These are the people you want on your side. These are the people who will have your back, long after everyone else gets bored with the fact that your disease’s ass isn’t kickable.

I’m grateful to GSK for making it possible for us all to be in the same room.

Chronic illness can lonely. But you don’t have to be alone. You have a community. Find them here:

 

p.s. If you’re on Twitter, search #GSKSummit for a play-by-play of the day.

p.p.s. GSK paid for my travel and costs to attend the conference and were nice enough to provide me with a gluten free lunch.



6 Things Mother Nature Told Me One Sunday in My Backyard

I grew up on a farm in Iowa, a fact I’m sure I have mentioned a time or twelve. And despite my roots Carie Shermanthat grow from the deep, rich soil of the heartland, I’m not the best farmer. My Colorado backyard is Exhibit A. Thankfully, nature forgives—and often prevails—over the actions of the black-thumbed.

I recently spent a quiet afternoon in my backyard, where Mother Nature herself decided to speak to me. She reminded me of some things that helped me feel good, so today I’m sharing them with you.

Lesson 1: Wounds don’t impede growth.
We planted Aspen trees because of their relative non-fussiness and extreme fast-growingness (more than three feet a year!). But after they leafed out last spring, they were very top-heavy. Afraid they might break from the weight, we had the brilliant idea to tie them to the fence with twine. Now, remember how fast they grow? My parents discovered our error last fall. Removing the twine took hours, and with each revealed deep, one inch scars. We feared our beautiful Aspens wouldn’t come back this spring. But spring is here and the trees are thriving. They’re forever scarred. But they are still standing, still growing.

Our scars don’t prevent us from thriving, either.

Lessons 2 and 3: You can’t force something to grow, and life is always changing.
While shopping last October, my daughter grabbed a bag of daffodil bulbs and insisted they replace the row of tulips our dog dug up and ate earlier that summer (apparently we’re bad gardeners and bad pet parents). Being four, she wanted those flowers to grow overnight. But she soon learned that no matter how much she watered and watched over them, they would bloom in their own time.

The planting of the daffodils happened during a difficult time for our family. And the bulbs represented something we needed to cope: When the daffodils bloomed in the spring, life would be different. We couldn’t be sure those bulbs would grow, and we couldn’t be sure that life would be better. But it would certainly be different. Faith in the potential of those flowers got us through some difficult hours. Now that it’s spring, the bright and sunny blooms reminded me of how much we’ve changed and grown as a family since that fall day.

Change and growth happen in their own time.

Lesson 4: Everything leans to the sun.
When my brother-in-law’s granddad moved from upstate New York to Colorado 50+ years ago, he brought with him saplings from his lilac trees. As a housewarming gift, we received saplings from those same trees to plant in our own yard. But rather than Googling “best place to plant lilacs,” we chose to plant them in the coldest, darkest spot in our entire yard. Though they’ve grown half a dozen feet, they struggle to bloom each spring (a bummer, as aside from my family and friends, lilacs blossoms are my reason for living). Instead of growing tall, they’ve started to grow horizontally, to carve out their own space in the sun. They may be leaning—stretching way beyond the ideal—but they find the sun they need to bloom.

Growth can happen even when our circumstances are less than ideal.

Lesson 5: Without hard work, nature takes over.
When we moved in, our backyard was nothing but sod and rocks. We painstakingly moved the rocks (by hand) and added beds around the perimeter—work that thankfully we completed before I got sick. While we would never consider this project a gardening fail, it has taught us how much work a garden can be. Like the bald man with a hairy back, the lawn itself has bare spots but grass still grows strongly within those beds. Monitoring, weeding, and pruning are weekly jobs, despite the fabric weed blocker we installed.

To be what we want to be takes consistent, sometimes back-breaking, work.

Lesson 6: Nature is perfect as is.
When a petal falls off a daffodil, is it less beautiful? Are the Aspens we planted for shade less useful because of their scars? Do the lilac blooms smell any less wonderful because they are growing horizontally?

Nature is content to be what it is. I’ve never seen a tree cry or whine because it is not a blackberry bush. Kentucky bluegrass doesn’t try to make pretty purple flowers. And nothing that blooms feels the need to stand perfectly forever. Things change and things grow and it all happens in the right space and in the right time.

There’s beauty to be found wherever we are.

* * *

Albert Einstein is quoted as saying, “Look deep into nature, and then you will understand everything better.” He may not have had my backyard in mind when he said this, but even an hour of quiet in my urban connection to nature has given me some much-needed clarity. You can bet I’ll be spending a lot of time in my yard this summer, sitting in the shade of my Aspen trees and admiring my ever-resilient lilac bushes, imaging the next project we’ll surely mess up.


8 Ideas for Making Your Home Lupus-Friendly

Home sweet home means so much more when you find yourself confined to it. During a recent Carie Shermanconfinement of my own, I got bored and paged through my husband’s Family Handyman magazine. (It’s a hobby of mine to tear out projects I want him to do. His hobby to ignore my hobby.)

Anyway, there was an article about aging and adapting your home for comfort and safety. Since arthritis and autoimmune disease go together like peanut butter and jelly, I thought these tips could be helpful. (Don’t forget to print this list for the handy-person in your life to ignore!)

1) Replace toggle light switches with rocker switches. The big on/off plate of a rocker switch can be easier for arthritic hands—you can operate it with a finger, knuckle—even your elbow.

2) Replace cabinet knobs with handles. The writer suggests replacing small knobs with C- or D-shaped pulls for easy opening.

3) Raise your washer and dryer to save your back/knees. They suggest purchasing a pedestal that raises them by 12-15 inches (or ask your handy-person to build one—directions can be found at family-handyman.com).

4) Place convenient resting spots. If you have a lot of steps in your house or long hallways, place a bench or chair nearby (ensuring it’s not a tripping hazard!).

5) Replace doorknobs with levers. When you’ve lost dexterity in your hands, it’s far easier to push down on a lever than it is to twist a knob.

6) Considering a kitchen remodel? Think about installing such items as rollout drawers, a shallow sink, appliances with touch-pad controls, and maximize drawer storage over upper cabinetry.

7) If you ever find yourself wheelchair bound, you can widen your doorways by installing offset hinges.

8) Install “invisible” grab bars. I’m far too vain to install a traditional grab bar (I’m not even 40 yet!). But I have to admit, there have been times I could have used a little extra leverage. The article says there are many options for stylish, sturdy bars. Check out the Invisia Collection or google “designer grab bars.”

Bonus Tip! The article presented a brilliant way to help someone who doesn’t have arthritis know how it limits your mobility. Says writer Louis Tenenbaum, “Hold a tennis ball in the palm of your hand inside a sock. Now walk around and try to manipulate the switches, doorknobs, and cabinet pulls in your house.”

Do you have any tips for making your home more comfortable? Share them in a comment below.