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.


Martha Beck’s Formula for Reversing Bad Fortune (As Applied to Chronic Illness)

Carie ShermanBy Carie Sherman

It’s been a rough couple of months as it relates to my health. Nothing serious–thank goodness–but annoying nonetheless.

I’ve been sick with acute illnesses (shingles and strep throat) as well as the “same old same old” (big-time fatigue and fibro-pain top my complaints). On top of that, it’s summer, and I’m one of those “live for summer” types who hates being stuck inside. I’m so anxious to feel well.

But since I don’t, I’m thankful to have read an article by Martha Beck in the most recent issue of Oprah magazine. She’s a life-coach who uses humor, self-deprecation, and a fine writing style to discuss various topics of enlightenment. This article, Reversal of Bad Fortune, describes how we can use our experiences in one of two ways: As a catalyst for hopelessness or a catalyst for growth.

I can’t recall the last time I felt well physically. And despite my best efforts, it’s wearing on me mentally. Clearly I need help weathering my “accident.” So I decided to use her formula. And though publishing this will make me feel more exposed than Janet Jackson at the Superbowl, I’m sharing it with the hopes it makes someone else feel better, too.

What follows is the example Martha used of her friend who experienced a serious, life-changing car accident as well as my own assessment.

Martha Beck’s Accident Formula

First, write down the pertinent info about your “accident.”

Annette wrote: “I was crossing an intersection when a driver, high on meth, ran a red light and hit me at 70 miles per hour. My car rolled three times and stopped with me hanging upside down. I was able to call my husband, and help came right away.”

I wrote: Just after the birth of my first child and the beginning of a new career as a freelance writer, I was diagnosed with an incurable chronic illness.

Next, isolate the key components of the above statement.

Annette wrote: 1) Intersection. 2) Meth addict. 3) Red light. 4) 70 miles per hour.

I wrote: 1) Birth. 2) Child. 3) Writing career. 4) Diagnosed. 5) Incurable chronic illness.

Third, pretend you are each component of your accident. Use free-association and talk about yourself as if you were the individual component.

Annette’s first word was “intersection.” She said: “I’m a crossroads, a place where Annette can make an important choice.” For the word “driver,” she said “I’m a speeding driver, high on meth. I’m the insanity of humans and of the world. I’m here to teach Annette not to be afraid because fear is useless.” So on and so forth.

I’ll admit it–this part was hard. And I’m not sure if I did it correctly. But here’s what I wrote:

1) Birth. I’m the beginning of a new life. In life there are highs and lows.

2) Child. I am a child. I am a new life. I’m learning to navigate a new world with the help of many wonderful people.

3). Writing career. I’m a writing career. I’m flexible. I’m creative. I’m challenging and fun. I’m an opportunity to learn. I am filled with rejection, yet joyful with acceptance.

4). Diagnosed. I am a diagnosis. I am a suggestion of what is. I am not a definition.

5). Incurable chronic illness. I’m a chronic illness. For Carie, I am not a death sentence. Yet I am difficult and challenging and require change. I am here for the long haul. Carie can learn to live with me or fight me. I require a focus that Carie has never before had. I require Carie to focus on what’s most important.

Finally, read your original description again and incorporate the meaning you’ve created through the free association exercise.

Annette discovered this: “The story of her accident turned out to be a pivotal moment when she could choose to release her fear of death and go on with greater serenity.” Martha says, “Actively choosing to look for meaning in her accident left her happier and more vibrant; seeing it as meaningless would have caused her to contract in terror.”

And here’s what I learned: Even though I’ve spent the better part of this week moping around because I can’t raise my arms above my shoulders, this process helped me remember what’s positive about my illness. (Which is some feat, given I’ve complained to my husband at least once an hour about how miserable I feel.)

My “accident” (aka, my health issues) requires new beginnings. I can choose to fight my new reality, or I can learn to accept it with the help of my support network. It reminds me that life is challenging and constantly changing, and if I hadn’t gotten sick, I might still be focused stuff that’s not important (like an unfulfilling career that would have required far too much time away from my little girl). My life has changed. And during weeks of pain and uncertainty, it’s bound to be frustrating and depressing. But it’s not hopeless.

Thanks, Martha Beck, for the much-needed perspective.

I hope you found some, too.

What helps you? Leave a comment below.


Before You Complain About Your Doctor(s), Again…Please Read

Carie ShermanBy Carie Sherman

I spend a lot of time with doctors.

For more than a decade, I have written for physicians and count many as clients. In fact, earning the respect of my physician clients has been one of my greatest achievements as a writer.

And like any good lupus patient, I spend my free time in waiting rooms—a primo place for people watching that delights the writer in me.

It’s easy to recognize the regulars. They smile. They look relaxed. They knit, read, play video games, stare unapologetically and take notes (okay, maybe that’s just me). But newbies are far more fun to watch.

While I’m usually entertained by a freaking out newbie, a lady yesterday infuriated me. What began as some serious huffing and puffing ended with a fist pounding on the reception desk and followed by a…

If I treated my clients this way, I’d blah, blah <explicative> blah…!”

She went on…

Overpaid < explicative >, lazy, they’re the reason health care in America sucks…”

Her tirade ended with a resounding…

F&*% doctors!”

And to my relief, and that of my waiting room peeps, she exited the building.

Continue Reading


Intervention – An Update and an Intro to a Fellow Friend in Lupus

Carie ShermanBy Carie Sherman

A few weeks ago, I humiliated myself by sharing my food intake. My confession was accompanied by a vow to eat five fruits/veggies daily. I’ve stuck with it and—surprise, surprise!—I feel better. My stomach again growls, and I’m hungry for something besides high-fructose corn syrup.

Thanks to everyone who responded on Facebook, and my friends who sent me texts ranging from “REALLY?!?!” to “No wonder you sleep so much” to “You’re gonna get fat and I’m going to laugh.”

And special thanks to two people who made this dietary change much easier to swallow. First, thanks to my meat-and-potatoes-husband who has prepared and eaten more salads in one month than he did during 2006. Second, thanks to my friend Michelle, who sent me a 2,500 word email filled with crazy-good info about finding better health.

Lupus Colorado introduced me to Michelle because we had a few things in common: We were “similar” in age (bless you Debbie for thinking so), both new moms, and both had lupus (Michelle’s diagnosis definitive; mine as of last week still in limbo).

Meet Michelle. AKA, My Daily Inspiration

You know those people you meet and within 30 seconds, you’d do anything to be his or her friend? That’s Michelle. She’s bright, funny, warm, empathetic, energetic, bubbly, motivated, fun, adventurous, thoughtful, and holy crow—I honestly could go on!

Michelle lives on the western slope and drives to Denver once a month to see her doctors at University Hospital. Our first meeting was at a playground, where we shared our stories and our little girls ran around as if their watered-down Juicy Juice was swapped with Red Bull.

I felt like crap that day and did my best to hide it. Michelle was in great shape, and I learned she was a fitness instructor and a total nerd about nutrition. It was shocking to hear that less than a year before she had been fighting for her life, spending months in intensive care due to lupus complications.

lupus colorado healthy eatingShe had been so sick. And she was now so healthy.

My excuses for not taking better care of myself were weak, and I knew it. Not that she made me feel bad. Instead, she encouraged me to make small and sustainable changes. Like eating real food.

It took me a while, but my Milk Dud box mittens have come off and I’ve rediscovered proper kitchen utensils and the foods that come with them. And I owe so much of this to Michelle.

Over the next few weeks, I’ll share Michelle’s encouragement and the hard-fought wisdom she earned on her journey from ICU and chemo to teaching multiple fitness classes a day. And of course, I’ll share my own experiences of trying to adopt a healthier lifestyle.

Doctors can’t “cure” us, but we can improve our health. It might be hard, but like Michelle told me: The changes that heal you are easy to adopt for good.

What lifestyle changes have you made that help?

Until next time,

Carie

P.S. I sprained my wrist while carrying a grocery bag. I tried to avoid the doctor but it bruised, swelled and made typing miserable, which simply cannot happen in my world. My PCP is sending me to see an orthopedist today. This injury and a few others may or may not be related to my connective tissue disease—does anyone else experience such injuries? Or am I just a klutz?