Big News!

I have some excellent news.

I don’t have lupus.Carie Sherman

Now, don’t jump to any conclusions. I have not been cured.There is no cure for lupus!

And I’m still sick. My doctor changed my diagnosis from undifferentiated connective tissue disease to primary Sjogren’s Syndrome with fibromyalgia. (And IBS and GERD, but who’s counting?) Like lupus, UCTD and Sjogren’s are both systemic autoimmune disorders.

As long as I keep taking my meds and practicing radical self care, my doc thinks I’ll stay relatively healthy, dealing mostly with “nuisance” symptoms (like, needing 12 hours of sleep or being unable to grip a pencil or move without significant pain).

Nuisance, indeed.

My path to diagnosis is not unusual. On average it takes lupus patients six years for proper diagnosis. Misdiagnosis is common. I never met all the diagnostic criteria of lupus. And like this website says, UCTD can, over time, evolve into more specific connective tissue diseases like lupus or Sjogren’s or scleroderma.

So, what’s next?

I spoke with Lupus Colorado’s executive director, and we agreed that I would stay on for a while and continue writing about issues that are common for lupus patients. If you’ve called Lupus Colorado lately, you likely spoke with Kesha. She’s shared with me her story of getting diagnosed with lupus, and I’m working on a post to share her inspirational story with you.

I’m also, as of this morning, going to go on an elimination diet with the hope of reducing inflammation in my body and regaining some of the energy I so desperately want back. I’m working with Dr. Julie at Ascent Health Center. She’s assured me that I’m not a lost cause, that I can feel better by making some additional lifestyle changes. So I’ll be sharing my experience with this, as well!

Finally, a sincere thank you to Lupus Colorado and all of its readers for supporting me through this gray lupus-limbo I’ve been dancing in for the last five years. I’ve enjoyed connecting with each and every one of you! And look forward to sharing more stories about navigating life with a chronic illness.


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!


Interested in Better Health? Stop Deciding

I took my daughter to the dentist yesterday. No cavities! It was a big mom win, as lately I can’t seem to open the internet or turn on theCarie Sherman television or talk to well-meaning adults without feeling shame for something I’m doing wrong that will hinder her for life.

I too get a clean bill of health at the dentist. This stems from wearing braces through middle school, high school, and a few months of college. Yes, college. (I also had a perm. And amazingly, zero dates.) In case you’re wondering, the first thing orthodontists do to kids getting braces is show terrifying pictures of what your teeth will look like if you don’t brush well. I still have nightmares.

Why do I still do a good job? I’d like to say it’s because I’m conscientious about all aspects of my health. But the truth is that my brushing/flossing/dentist-appointment-every-six-months routine is because of one thing:

It’s a habit. I don’t think about it. I just do it.

Forming Habits

According to Gretchen Rubin, best-selling author of Better Than Before: Mastering the Habits of Our Everyday Lives, the secret to forming good habits is finding specific strategies that will work for you. She believes we all have certain tendencies that impact our abilities to form and break habits.

I had the pleasure of meeting Gretchen at a reading she had at the Denver Woman’s Press Club (see photo evidence here!). Her first step? Deciding to not decide. When something remains a decision, you can say yes or no. I want to make daily yoga a habit. Yet most mornings, I still make a decision. I don’t decide whether I’ll brush my teeth. That happens. That’s habit.

When you live with chronic illness, changing your habits—good, bad, and indifferent—is almost always a requirement. And it’s almost always (in my opinion) super hard to do.

Gretchen Rubin’s Four Tendencies

Gretchen believes the next step is knowing yourself and your tendencies. It’s not about changing who you are. It’s about knowing how you respond to expectations.

“When we try to form a new habit, we set an expectation for ourselves,” she says. I do this all the time. I set an expectation that I will not eat the entire pan of brownies. Then someone leaves me home alone and suddenly the pan is licked clean.

We all have outer and inner expectations. Outer expectations are things like deadlines, laws, rules, threats of your husband leaving you if he trips over your shoes one more time…. Inner expectations are things like doing laundry every Tuesday or eating a healthy breakfast or stop licking pans of food like a dog.

She observed that most people fall into one of these four groups:

1)      Upholders respond to outer and inner expectations. They keep schedules and to do lists. And they do them!

2)      Questioners resist outer expectations. Like how my daughter believes I need to justify her bedtime. She’s stopped taking because you’re 5 and I’m the mom for an answer. They meet inner expectations so long as they can justify them.

3)      Obligers (this is me) respond to outer expectations. Inner expectations…not so much.

4)      Rebels say Expectations Be Damned! and go about their merry way.

As an obliger, I begin each day setting my own intentions. And every day, I anxiously await emails and phone calls that will allow me to respond to someone else’s needs first.

What I didn’t know (and which explains so much) is that I also have a bit of a rebel in me. Which, also explains why some days I ignore all expectations and spend the day adding dresses I don’t need into online shopping carts I never intend to buy.

Not sure which category you belong to? Never fear. A quiz is here!

So What?

Too much of my life still comes down to a decision. Some nights when I’m lying in bed, I decide whether it’s worth it to get up and take my Plaquenil. I walk or do yoga most days, until someone needs something from me and I drop everything to meet their expectations. I meditate every day, but it’s not a routine. I decide to do it. And deciding takes energy. As we all know, lupus and lupus-like illnesses like mine mean energy is already in short supply.

Are you interested in exploring how your habits impact your life? I am. So I’m reading this book again. I’ll fill you in on my progress in my next post.

 

 


Chronically Creative: Improve Your Way of Operating

I have a magnet on my refrigerator that says:Carie Sherman

“Creativity is not a talent. It’s a way of operating.” – John Cleese

It’s my reminder that, with the right attitude, each and every struggle I face is manageable. But I forget. I fall into old patterns of Woe is Me and Nothing Ever Changes and My Butt Looks Ginormous in These Jeans. So I’m expanding on this thought by sharing with you this awesome list of 21 Ways to Unlock Creative Genius (courtesy of Entrepreneur). I’ve stolen six (though all apply) and added some thoughts on improving daily operations when you live with a chronic illness like lupus.

  1. “Be a Copycat – Build on the Classics.” Whether you’re newly diagnosed or you’ve been living with chronic illness for years, find a mentor who you think is living life well. Here are a few people I follow, to name a few: Sara, Amanda, Tiffany, and Marla.
  2. “Pick the Worst Idea – Not All Risks are Bad. I recently took a big risk. I joined OrangeTheory Fitness (because the best way to go from couch potato to fit is to over-do it, right?). Well, I learned the hard way how not to do it. But then I spoke with my BFF, my doctor, his nurse, and trainers at OTF. And now that I know the best way for me to approach this one-hour intense workout, I’m six workouts in and feeling awesome (it’s pretty cool to feel sore because you exercised, not just because you exist!).
  3. “Ask Three People – New Perspectives Bring New Approaches.” Finish this sentence: OMG I HATE MY CHRONIC ILLNESS BECAUSE _____. Shout the first thing that pops out of your head. Now, find three people you trust. And ask them what they’d do to minimize the impact of the problem you identified.
  4. Look Outside Your Industry – Learn What Others Can Teach. Do you normally follow patient-centered blogs? Read up on physician perspectives. Die hard yogi? Read up on running. Agnostic? Check the news to see what the Pope has been up to. You never know what you can glean from seeking out new perspectives.
  5. Reset Goals – What Do You Really Want? The goals I set in my 20s look far different from those I am working toward in this my 39th year. Chronic illness is a big reason why. And in many ways, it’s such a blessing. Back in the day, my need to achieve was so great that I never enjoyed anything. If I was making breakfast, I was thinking about dinner. If I achieved something, my thoughts would be taken over by 1) fears of my accomplishment getting taken away, and 2) wondering incessantly about what was next. My slow down may have been forced, but I’m far better about living in the moment. It makes me a better friend, wife, mother, and writer. I’d love it if my old body could meet this new mind of mine … but I’d probably just go back to overdoing and overachieving. (My last big dose of prednisone and it’s crazy-energy surge are evidence of that!)
  6. Start Over – Scrap Everything. What’s not working for you? Start small. Just last night I tripped for the hundredth time over a laundry basket that frequently lives at the foot of our bed. The path between said laundry basket and my dog’s giant bed is not big enough to maneuver in the dark. It only took me three years to figure it out that I could just move it (further evidence that I’m not exactly the brightest bulb…).

Chronic illnesses like lupus shine a light on your life in ways you can’t expect. But if you keep your head about you, if you look at your life like a business or project, if you decide your creativity is endless, you’ll find ways to live better, live smarter, and live healthier – despite the diagnosis on your medical chart.