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.


7 Tips and Tricks to Remember at Your Next Doctor’s Appointment

1. Think of your doctor as a less hilarious version of your best friend. And at your appointment, it’s time to Carie Shermantell all. Sure, symptoms can be embarrassing. But your doctor knowing that you forgot your ATM pin (again) or you have a rash in a place you’d prefer not to mention could be critical to you getting the best care.

2. Speaking of your BFF, bring her with you. Or your husband or mom or your aggressive assertive next door neighbor. Having someone else listen and ask questions can mean less pressure on you.

3. Write it down. Did your doc give you new info or instructions in your appointment? Write it down. Did a new symptom pop up? Write it down. You can’t remember your ATM pin. Believe me when I say, you’re not going to remember this either.

4. Own your behavior and choices. If there are three pills left in the bottle, you did not finish that course of prednisone. Starting an exercise program tomorrow does not count as a “yes” to your doctor’s “are you getting exercise” question. Lupus requires that you take a hard look at all aspects of your life. If you feel rotten, are you getting enough rest? If you feel good, what have you been doing right?

5. Your doctor gets to decide what information is irrelevant. Lupus is super-complex. Let your doc decide which symptoms he cares about. Over the course of years (and yes, you’ll be seeing your doctor for many, many years), patterns emerge. The more you and your doc understand about your lupus, the better you’ll be able to manage your symptoms.

6. It’s on you to address your concerns. Remember, no matter how caring your doctor is, she is not thinking about your problems after your appointment. So don’t leave the office until you’re satisfied with the info you received. This is your body, and you’re the only one who lives in it. Get the answers you need to feel better.

7. Remember that lupus baffles elite medical minds. It’s okay if you’re confused, too.


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.


Control is a Mirage that Makes You Throw Your Cell Phone

I don’t get out of the house much. So I’m not quick to forget when someone cuts me off inCarie Sherman traffic. And getting cut off twice in the same day, by two different Chrysler 300 sedans, was unforgettable. It was no coincidence. It was a reminder of something I (sort of) learned 10 years ago, while planning my wedding.

Wedding planning made me, shall we say, a bit hyper-focused. Okay, that’s not true. I was obsessed. Totally and completely obsessed.

I don’t know how it happened. I’d set out with a mantra of Simple, Simple, Simple. But as the months passed by, I felt driven to control everything. I wanted perfection.

Which is why I flipped out a few weeks before the big day, after realizing that I couldn’t arrive at my outdoor wedding in a faded old Jeep Cherokee.

I directed what remained of my modest budget to renting a limo. And not just any limo. A brand new, white, Chrysler 300. So new, that we’d be the first people to rent it. It was elegant. It was classy. It was exactly the touch my Simple and Elegant affair needed.

All was well. Until the a few hours before the rehearsal dinner, when the limo company called to let me know that the delivery of the limo—my limo!—had been delayed.

Delayed, meaning, no classy, new white limo to drop my dad and I off at the wedding site. No elegant, charming, shiny white limo to whisk my new husband and our wedding party off to the reception.

“We’re so sorry,” the person I now hated most in the world said. “We’re upgrading you for free. We’re sending our most requested model. It’s a Hummer.”

A Hummer. My uncle drove a Hummer. It was bright yellow. It was not Elegant. It was not Classy. It was … a Hummer.

“It’s orange,” the person I hated most in the world added, as I was choking on tears. She listed other features. But all I heard was orange.

I would show up to my wedding in an orange Hummer.

I managed to thank her. Then I threw my phone.

After that call, things got worse. Much worse. Tornadoes. Torrential rains. Street flooding. Snow.

Yes, snow. The morning of June 4, my perfect wedding day, it snowed. Followed by rain, more rain.

Cue major meltdown.

It rained all morning, which meant, no outdoor wedding. Even if the rain stopped, the ground was soaked. My perfect wedding was sunk.

But here’s what’s funny: No amount of my own planning could have delivered the perfection that emerged from what I’d perceived to be a disaster.

The sun came out, just in time to for pictures. We were married indoors and it was beautiful. People still comment on it, nearly 10 years later. My husband and I have nothing but fond memories to look back on.

The Hummer was, well, orange. Bright orange. But what it lacked in elegance, it made up for in fun. Neon lights + well-stocked bar + awesome sound system = a total and complete blast with my new husband and our closest friends/family. The Hummer was a hit. And far more “us” than any boring old white limo could have been.

Our wedding day was perfectly “us.”

* * *

I’d like to say it was then that I kicked my inner control freak to the curb. But I needed a chronic illness to teach me that control is an illusion. I’m not done learning; this is a lesson for which I need constant reminding.

During that drive last week, I’d been ruminating. Running through my standard Woe is Me routine about something I couldn’t have anticipated, and I certainly had no control over.

Cue getting cut off—twice—by two versions of the car that was “supposed” to be was just the reminder I needed to chill out and accept what comes.

* * *

No one plans on getting a chronic illness. It comes into our lives like a storm, and we’re constantly dealing with its aftermath. But there are lessons to be learned in chaos.

Many lupies learn that control is a mirage: It looks like one thing. Then poof! It’s blown to smithereens. Sometimes it leaves behind something terrible. Yet sometimes, it leaves behind a bright orange hummer. Is it ideal? Not really. Is it still pretty great? Yep, it sure is.

What life lessons has lupus taught you? Share your experience in the comments below.