Chronic Illness and Jigsaw Puzzles

I hate jigsaw puzzles. I have neither the attention span nor the inclination to make sense of their colorful chaos. But my husband loves them and last weekend was his birthday.Carie Sherman So we sat down together to complete a puzzle.

Thirty seconds after dumping the box’s contents onto the table, I panicked. I ran to the kitchen to unload the dishwasher. And I hate unloading the dishwasher.

Up for the challenge of both puzzle and me, my husband asked me to sit back down. He gave me a strategy. Because whether I liked it or not, I was helping him with this puzzle.

Chronic Illness is an Ugly, Confusing Puzzle

A chronic illness like lupus forces you to sit down at the table. You scramble. You panic. It’s too big. It’s too hard. But if you want any life at all, you’re forced to confront the giant mess before you. 4

As my husband explained in his puzzle lecture, you start with what’s easy: The corner pieces give you structure.

For my illness, these were my doctors—primary care, rheumatologist, neurologist, and my therapist.

Once the corners were in place, I had to fill in the rest of the structure: the medications; the lifestyle changes.

With the edges in place, he suggested I start with the next easiest thing. For the most part, this strategy worked. But like chronic illness, it was still frustrating. The pieces all looked alike. Pieces that seemed to fit, didn’t. I tried forcing them. That didn’t work. Then pieces seemed to be missing. Some were trapped in the box. Some fell of the floor. One got stuck in the lining of my boot. I wanted to throw things. I wanted to throw things at him.

I wanted to quit. Instead, he’d tell me to take a break. And after a lap or twelve around the house, and more than a few deep breaths, I’d come back to the table. Renewed.

What a relief it was when I connected a few small pieces! Seeing how it fit into the bigger picture was, dare I say, exhilarating.

The puzzle took such a long time. It took far more patience than I knew I had. We stuck with it and soon sat in front of a completed puzzle.

I’m still working on the puzzle that is life with a chronic illness. It has required me to find a resolve I didn’t know I had. It has required me to overcome my tendency to run away from things that don’t come easily to me. It has been a lot of trial and error.

Like anything in life, it’s all about your approach. Knowing that there are necessary cornerstones and structures will take you a long way. But prepare to be frustrated. Prepare to need help. Prepare to be angry, to be sad, to be frustrated with yourself; to be frustrated with others.

Whatever you do, dive in. And stay seated at the table. Even if you really hate puzzles.


5 Things Every Sick Person Needs

1. A “sick” friend. If you’re blessed with a diagnosis, then by garsh, you need to find a friend with something similar. Only yourCarie Sherman sick friend will understand the uncomfortable feeling of everyone on staff at your pharmacy reaching for your prescriptions without needing to ask your name. When your sick friend says, dang, that sucks, you know she gets it. Being in a constant state of sickness steals your rationality. It takes a sick friend to call BS, say, when you’re constantly looking on the bright side. Your sick friend is the one who says, it’s BS that you feel like this, and it’s okay for you to say so. (Note this sick friend will also call you on any over-the-top pity parties or irrational dropping off the face of the earth.)

2. A creative outlet. Find what makes your heart sing. Maybe it’s knitting. Maybe it’s coloring in your adult coloring book. Maybe it’s using your imagination to find ways to make the crap that frustrates you most, better. And now please—do not give me the song and dance about “not being creative.” Just because your high school art teacher didn’t marvel at your genius doesn’t mean you can’t live a creative life. My favorite definition of creativity is from Bill Moyers (as quoted by Brainpickings): “Creativity is piercing the mundane to find the marvelous.” So what if your creative outlet is organizing your sock drawer. If it feels marvelous to you, then it surely is.

3. A health advocate. My primary care provider has gone to bat with insurance. She’s held my hand while I cried. She’s comforted other patients by telling my story of things we’ve found together that have made me feel better. Recently attended a gastrointestinal conference and was told about a probiotic strain that was good for IBS-C (one of my many diagnoses). She stood in Whole Foods for 30 minutes looking at every brand of yogurt strain to find one that contained this particular strain—then told me about it straight away! (Thanks, McKenzie!)

4. A basic trust in the universe. Or, a healthy existentialist attitude. Whether you believe the world is in constant motion to bring you to your highest and best—or if you believe the world is indifferent to you so it’s on your shoulders to try to make the most of any situation—the comfort gained from leaning inward toward your essence is immeasurable.

5. Child’s pose. When everything else fails, and you’re not sure about anything, get down on your knees and put your head to the ground. If this is too painful, and sometimes it is for me, try a supported version. This is medicine I use daily. And it works. No matter how angry or sad or frustrated or overwhelmed I feel before, I feel immensely better after spending time in this yoga pose of surrender. I suspect you might, too.

Pain is inevitable. Suffering is optional.


6 Rules for a Stress-Free Summer

Yay! Summer! Right?Carie Sherman

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.


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.