Finally! A Lupus Walk in Colorado, for Colorado

When I was a little girl, my dad gave me a nickname. And while some young girls might have found it embarrassing, I owned it: I was Carie the Crusher.Carie ShermanDad borrowed the name from one of his favorite Bugs Bunny characters, a professional wrestler whose physical strength made him the champion. (Of course Bugs uses his wiley ways to defeat him, but The Crusher’s physical strength is never denied.)

Here’s why this is funny: I was a wimp! I was tiny: My grandma still talks about how my skinny legs didn’t fill out a pair of tights. My best friend’s mom wouldn’t fix me a whole hamburger for lunch because someone so small surely couldn’t eat that much. Mom ordered my clothes from the Sear’s catalog because they offered “slim” jeans and pants.

In the face of these truths, I never once doubted my own physical strength. Because I was – in Dad’s mind and in my own – Carie the Crusher.

I grew up thinking I could beat up the boys. In some cases, I did. My little brother grew 7 inches taller than me and works a physically demanding job every day, but I’m still not afraid to arm wrestle him. Even when I get beat, I still think I’m tough. I imagine now that these delusions about my physical strength translated into a mental toughness fueled entirely by stubbornness and egged on by Dad’s running commentary.

Until this very moment, I didn’t consider the fact that my toughness may be a result of this nickname that Dad teased me with. Maybe it was never his intention, or maybe he it was deliberate—like Jonny Cash’s song about A Boy Named Sue. (Either way, thank you, Dad, for making your WimpyWimpyWimpy daughter feel so strong!)

Walk with Me to Support Lupus Colorado

When my health got wonky in 2011, for the first time in my life, I felt weak. I went from boot camp to bed bound and it sucked. I contacted Lupus Colorado, and they gave me an opportunity to share my story and work through my issues in the form of this blog. For this, I’m eternally grateful. Chronic illness is so much more than what’s physically happening to your body: It requires the summoning of strengths you aren’t aware of until you get thrown into the ring.

Lupus Colorado is the only organization in Colorado helping people stay tough while navigating the realities of living with lupus. Please, join us on Saturday, Sept. 10 in Berkeley Lake Park, for the 2016 Lupus Colorado Community Walk.

You can even join my team, Carie’s Crushers! (I’m literally the only person on my team at the moment. I’m tough, but showing up as a one-woman team would be kind of embarrassing.)

Let’s crush this!


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.