Control is a Mirage that Makes You Throw Your Cell Phone

I don’t get out of the house much. So I’m not quick to forget when someone cuts me off inCarie Sherman traffic. And getting cut off twice in the same day, by two different Chrysler 300 sedans, was unforgettable. It was no coincidence. It was a reminder of something I (sort of) learned 10 years ago, while planning my wedding.

Wedding planning made me, shall we say, a bit hyper-focused. Okay, that’s not true. I was obsessed. Totally and completely obsessed.

I don’t know how it happened. I’d set out with a mantra of Simple, Simple, Simple. But as the months passed by, I felt driven to control everything. I wanted perfection.

Which is why I flipped out a few weeks before the big day, after realizing that I couldn’t arrive at my outdoor wedding in a faded old Jeep Cherokee.

I directed what remained of my modest budget to renting a limo. And not just any limo. A brand new, white, Chrysler 300. So new, that we’d be the first people to rent it. It was elegant. It was classy. It was exactly the touch my Simple and Elegant affair needed.

All was well. Until the a few hours before the rehearsal dinner, when the limo company called to let me know that the delivery of the limo—my limo!—had been delayed.

Delayed, meaning, no classy, new white limo to drop my dad and I off at the wedding site. No elegant, charming, shiny white limo to whisk my new husband and our wedding party off to the reception.

“We’re so sorry,” the person I now hated most in the world said. “We’re upgrading you for free. We’re sending our most requested model. It’s a Hummer.”

A Hummer. My uncle drove a Hummer. It was bright yellow. It was not Elegant. It was not Classy. It was … a Hummer.

“It’s orange,” the person I hated most in the world added, as I was choking on tears. She listed other features. But all I heard was orange.

I would show up to my wedding in an orange Hummer.

I managed to thank her. Then I threw my phone.

After that call, things got worse. Much worse. Tornadoes. Torrential rains. Street flooding. Snow.

Yes, snow. The morning of June 4, my perfect wedding day, it snowed. Followed by rain, more rain.

Cue major meltdown.

It rained all morning, which meant, no outdoor wedding. Even if the rain stopped, the ground was soaked. My perfect wedding was sunk.

But here’s what’s funny: No amount of my own planning could have delivered the perfection that emerged from what I’d perceived to be a disaster.

The sun came out, just in time to for pictures. We were married indoors and it was beautiful. People still comment on it, nearly 10 years later. My husband and I have nothing but fond memories to look back on.

The Hummer was, well, orange. Bright orange. But what it lacked in elegance, it made up for in fun. Neon lights + well-stocked bar + awesome sound system = a total and complete blast with my new husband and our closest friends/family. The Hummer was a hit. And far more “us” than any boring old white limo could have been.

Our wedding day was perfectly “us.”

* * *

I’d like to say it was then that I kicked my inner control freak to the curb. But I needed a chronic illness to teach me that control is an illusion. I’m not done learning; this is a lesson for which I need constant reminding.

During that drive last week, I’d been ruminating. Running through my standard Woe is Me routine about something I couldn’t have anticipated, and I certainly had no control over.

Cue getting cut off—twice—by two versions of the car that was “supposed” to be was just the reminder I needed to chill out and accept what comes.

* * *

No one plans on getting a chronic illness. It comes into our lives like a storm, and we’re constantly dealing with its aftermath. But there are lessons to be learned in chaos.

Many lupies learn that control is a mirage: It looks like one thing. Then poof! It’s blown to smithereens. Sometimes it leaves behind something terrible. Yet sometimes, it leaves behind a bright orange hummer. Is it ideal? Not really. Is it still pretty great? Yep, it sure is.

What life lessons has lupus taught you? Share your experience in the comments below.


8 Choices I Make to Feel Good Despite a Chronic Illness

I’ve been having a hard time writing for this blog. Last night I realized why: It’s because I feel good. Who Carie Shermanam I to write on behalf of those struggling with this crap disease?

I confided in my husband. Always the voice of reason, he reminded me of everything that I have learned over the years, and everything that I must do to feel this good.

I didn’t see it before because it’s my routine. My new normal. I’d forgotten all that it entailed. So today I share with you, with the hope you might find a tip or two, the daily choices I make to help me feel good.

1) I rest. A lot. I took daily naps for a few years. On weekends, I still do. But most work days I can do without. That doesn’t mean I don’t rest. I take as many time-outs as an ornery toddler. On no-nap days, I go to bed. Early. 8:30. I’m asleep by 9:15 or so.

2) I take my meds. About 15 pills a day. Not all prescription–some are supplements such as iron or vitamin D. But it’s still a mouthful.

3) I stay home. There are a few days a week that I don’t leave at all. I’m fortunate to work from home. I’ve learned to take most meetings by phone.

4) I depend on others. My babysitter’s husband picks my daughter up for school. My husband runs most of our errands. My friends come over and they cook dinner. My family stocks my freezer and vacuums under the couch.

5) I plan ahead. If I have a fun event or people coming from out of town, I start preparing way ahead of time. I make sure the days leading up to said event and the days after are cleared for downtime.

6) I manage my stress. Every single day, I move my body. Most days I go for a morning walk and practice yoga. I meditate once or twice a day. I remind myself throughout the day to be mindful–as I’m chopping veggies or washing my hair. I read. I see a therapist. I stopped watching the news and exceedingly violent programs (esp. if children or animals are involved). I stretch and meditate and pray before bed.

7) I say no and I cancel plans. Five years ago, I would say yes to anything. Even if the thought of doing the request made my tummy hurt. I also used to slog through anything I had committed myself to. The fact is I need to listen to my body. And feeling bad still sneaks up on me. I stopped faking it and can now admit when my body defeats me.

8) I find meaning in everything. I choose to face each event–even silly things like getting a good table in a packed restaurant–knowing that I’ll receive the best possible outcome in every situation. I believe the obstacles I face are for my own good. A rejected client estimate means there must be a better project out there for me. In the face of something tragic, I work hard to accept it and learn.

These eight things help me feel pretty darn good. I still have bad days. I screw these eight things up. But my illness reminds me very quickly when I deviate from this routine. So I come back to it.

I could be doing more. Since I’m feeling better, it’s time for me to start adding things back into my life. I’d like to see friends and family more. I’d like to do more meaningful activities. I still need to make better eating choices. And I definitely need to have more fun.

For now, I’ll be content with where I’m at. I’ve come a long way on this journey to better health. And it feels good.

What changes have you made that help you feel good? Leave a comment. You never know who might need your good advice.


My Challenge to You in 2015: Learn to Trust Yourself

Fellow friends in chronic illness, I think we should agree that in 2015, we are the experts.Carie Sherman

Because, really: the only person who can be an expert on you, is you! With a disease as multifaceted as lupus, I think it’s the only way.

When you have a chronic illness, it’s easy to give everyone else power. You feel sick, so you see a doctor and start new meds. You see more doctors. You submit to test after test. You get conflicting advice. You read endless books and blogs. Well-meaning friends and family explore hundreds of options. Yet many people with lupus still wake up each day feeling like they drank a fifth of vodka and fell down two flights of stairs the night before.

It’s easy to lose trust. But I think trust can make dealing with this lupus nonsense more manageable.

I’ll give you a health-related example. Over the last year, I began resenting my sleep apnea machine. My mask had permanently dented my forehead, and I’m vain. I was strongly considering having an invasive, hard-to-recover from surgery to remove my sublingual tonsils with the hope of curing my sleep apnea (and not having to spend the rest of my life wearing an ugly, face deforming sleep mask).

I spent the last few months trying to make a decision. But I just couldn’t decide. I berated myself for being such a procrastinator.

Turns out, I had a reason to procrastinate. I just didn’t know it yet.

Back in 2011, two independent sleep studies confirmed that I stopped breathing 30 times an hour, which constitutes moderate sleep apnea. At a recent appointment, I talked to my doctor about needing a different, non-forehead denting mask. He recommended another sleep study to make sure my treatment was as effective as possible. And, they’d find me a mask that works better. So I had another sleep study in October. And guess what?

No evidence of sleep apnea.

NONE!

My flabbergasted doc said there’s zero evidence of disordered sleeping or breathing. Apparently, spontaneous sleep apnea recovery doesn’t happen every day. In fact, he’s never seen anything like it. It defies explanation. We went over every possible reason, including the unlikely event that the study was wrong. The best we came up with was 1) I’m a medical miracle (which he chuckled about); 2) Taking allergy medicine cured my disordered breathing; and/or 3) (my brother-in-law is going to LOVE this crazypants statement) I quit eating gluten and cured my sleep apnea.

We concluded that we don’t know why my sleep apnea disappeared. But I’ve been sleeping without the mask for two months now, and I feel good.

Think of all the time I wasted, angsting over whether I needed to have surgery to cure my sleep apnea. Or worse, think of how terrible it would have been had I forced myself to make a decision when I wasn’t ready

Let’s learn something from this ugly dent in my forehead. The next time you find yourself doubting…or unsure whether a test is necessary or a new pill is the answer, give yourself a little credit. Trust yourself. This doesn’t mean you have cate blanchett (yes, that’s a 22 Jump Street reference) to pick and choose what you believe about your health. To fully trust yourself, you’re required to go full in—to really listen to your body, to really listen to your doctors, to really consider all the facets of your life and what might be causing your symptoms.

And for gosh-sakes, if you believe something is wrong, then don’t stop until someone really listens. If you don’t believe anything is wrong—that’s possible, too!

You are the expert on you. Not your doctor. Or your mother. Or a blogger who may or may not have lupus and claims going gluten free cured her sleep apnea. YOU.

Will you accept my challenge to cultivate a trust in yourself in 2015?

Stay tuned for future installments on trust. Happy New Year!


Bring Back the Fanny Pack and Other Lessons from Getting Lost in the Woods

Carie ShermanBy Carie Sherman

The BFF and I recently took a hike. We got lost. Well, not really lost, per se. Let’s just call it misinformed about the direction we had taken. We didn’t have a trail map. We “kinda” remembered the name of the trail we planned to take. And we “kinda” turned a 3-mile hike into 8.

Relax. We were in Castlewood Canyon State Park. We were able to see a physical human establishment for at least half of the hike and never spent more than 30 minutes between other groups of hikers–most of whom were refreshed and beginning their hikes from the various parking lots our trail took us past. And we had plenty of water.

The park does have decent elevation gains. My guess is at least 40,000 feet.

Here’s the best part: I wore a fanny pack. It was awesome. The BFF protested but knew if she took a real stand against my fanny pack I might start reconsidering the helmet I threatened to wear because of an article I’d just read about head injuries. She’s a confident girl and can handle when I’m strange, but she does try to stop me from humiliating myself.

Anyway, chronic pain folks, take note: I always carried a backpack but it kills my back and shoulders, likely due to the terrible hiking posture that one gains when one constantly stares at one’s feet. Turns out, my hips are good for hauling. I wholeheartedly encourage you to come to the darkside. Let’s Bring Back the Fannypack!

Who am I kidding. Fanny packs probably are back, for all I know about fashion and the like.

Anyway. 8 miles. Me. If I had known it would be 8 miles, I never would have started. I haven’t gone that far since 2010. And I didn’t realize it at the time, probably because the sheer elation of not needing to call in a backcountry search party for a day hike just minutes from urban areas, but it was a big deal. I hiked 8 miles. In this body. This body that two weeks ago wouldn’t allow me to lift my arms. As you know, I have an entire blog dedicated to my body failing me.

And here’s a kicker: I could walk the next day. And the day after that. And even the days after that, which were leading up to my period, when typically all hell breaks lose and I move only when forced. My body was…good.

Now, I’m not saying that I’ve cured my mind, body, and soul here. But I learned a valuable life lesson on this hike, and it’s a lesson you can apply to just about any circumstance under the sun.

Sometimes you have to get lost. Sometimes you just have to work way harder than your brain believes you can–even if the only reason is because you were forced. If you have the desire–and someone awesome by your side–you can really surprise yourself.

I have a lot of goals right now. One in particular scares the crap out of me. I have no idea what I’m doing. But I know I have to work and work hard and rely on the crazy cool people in my life.

I might not bring back the fanny pack (assuming, of course, it’s not already back). I might whine and complain. But I’ll stay on the dang trail til the end. Because I can.