The Fifth-Annual Memory Walk/Run to celebrate the life of Lisa Marie Pineda will be held Sunday, August 16 at Bittersweet Park in Greeley. All proceeds benefit Lupus Colorado. Click here for complete details.
Well, right for me. I love summer. But I live in Colorado, where humidity is minimal and the air gets cool at night. And I have central air.
For many lupus patients, summer can be a real drag—even if you’re not photosensitive. I often feel sick in the heat and know others do, too. But that doesn’t stop me from idealizing summer and setting unrealistic expectations about the wonderful summer I shall have (I’ve got a bit of Clark Griswold in me).
So here are my ideas on rules for a laid back summer. Add yours in the comments, please!
• Rule One. If you can order it online, order it online. I’m still surprised by the number of people who tell me they never shop online. After all, online ordering essentially turns boring errand-running into presents waiting at your front door. Plus, you save the $75 of extra crap you’d throw in the cart at Target. And, you can turn buyer’s remorse into a blame game (Amazon reviewer RunForestRun95 said this lipstick was the perfect shade of plum—it’s her fault I hate it).
• Rule Two. Auto-refill your prescriptions. You’d think in the last five years I would have found the 10 minutes necessary to set up automatic refills through my pharmacy. Nope. I almost always run out of my Plaquenil on a Friday, and it’s always when I’m out of refills. No more! Or, if you’re lucky enough to have the three month mail-in supply option through your insurer, maybe now’s the time to set it up!
• Rule Three. Plan 2-3 fun summer activities. Ones that mean a lot to you (and preferably, are easily rescheduled should you find yourself feeling unwell). For example, perhaps you won’t be broken-hearted to miss a trip to the water park, but it would make you really sad if you missed playing with your niece in the sprinklers. No one is able to pack enough fun into summer (and those who try often stress themselves out!). So my small list is full of simple things, like taking an evening walk to get ice cream and eating dinner on the deck. How about yours?
• Rule Four. Don’t skip meals. I’m not hungry in hot weather. And I know I feel better when I eat regularly. Although Rice Chex are square, three square meals, they do not make. So I’m going to make a list of easy-peasy meals and stock up the freezer. I’m trying to figure out my budget to see if signing up for a CSA (that’s community-supporting agriculture—and many deliver).
• Rule Five. Don’t let the extra daylight fool you. Just because the sun is awake doesn’t mean you need to be. If you’re like me, you still need winter-level rest, which means going to be when it’s light out. I recently drank a cup of iced coffee at 5 p.m. after waking up from a nap. Guess who found herself at Target at 9:30 p.m., loading up her cart with stuff from the Your Home Sucks Aisle? And guess who found herself stuck in bed most of the next day?
• Rule Six. Take a screen break. I have a screen problem. I want to be someone who does not need her phone glued to her backside, but I’m not. It stresses me out to have my phone—I dread the beep. It stresses me out to not have my phone. I need a break. My husband suggested I avoid screen time after work until our daughter goes to bed around 8. He thinks I can’t do it. Which is likely the only reason that I will succeed.
I hope you all have a happy, healthy summer filled with the things that make summer special for you. Thoughts on how to reduce stress? Share them below.
They say if you know one person with lupus, you know one person with lupus. I’ve known this fact 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.
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:
- This lupus checklist allows you to record your symptoms, which can help you—and your doctor—better understand how you feel.
- 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.
- 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.
Please join us for this health awareness and educational symposium presented by Lupus Colorado and the Urban League Guild of Metropolitan Denver.