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!


How You Know You Might Have Lupus

Sometimes, All You Can Do is Laugh…Carie Sherman

I’m feeling the stress of the holidays. Which means I’m also feeling many of my muscles and joints.

Am I alone? Yeah, that’s a silly question to ask a lupus crowd.

But since we’re on the topic of silly, I recently came across this video titled Does Laughing Make You Healthier?

Well, doctors say yes. And while having lupus is no joke, you gotta admit: Sometimes, all you can do is laugh.

So here is a list of my favorite chronic illness jokes, compiled in the spirit of Jeff Foxworthy.

(FULL DISCLOSURE: I didn’t write these jokes. I stole them from Internet memes that didn’t credit a writer.)

  • If you feel like Norm on Cheers when you walk into the pharmacy … you might have lupus.
  • If you drink coffee at 5 p.m. because it’s 7 a.m. somewhere … you might have lupus.
  • If you’re not wearing yoga pants and people ask why you’re so dressed up … you might have lupus.
  • If you fantasize about a medication label that says, “side effects include extreme sexiness” … you might have lupus.
  • If you’ve been held hostage by your blankets … you might have lupus.
  • If the sun is too loud … you might have lupus.
  • If you’ve ever laughed maniacally at a medical form with only 3 lines under “list your medications” … you might have lupus.
  • If you can’t tell if it’s killing you or making you stronger … you might have lupus.
  • If you automatically answer “yep” to any sentence beginning with “have you tried” … you might have lupus.
  • If it’s Monday, and you can’t make plans for tomorrow because you have plans on Friday … you might have lupus.
  • If you don’t know if you feel better or you’re just used to feeling sick … you might have lupus.
  • If you’ve considered your tombstone, and it says “I told you I was sick” … you might have lupus.
  • If you know the only thing tough enough to kick your a$$ is yourself you might have lupus.

Don’t worry – a fake laugh works just as well as a real one!

 


Thanks, Lupus! 12 Things I’m Thankful For…

In honor of Thanksgiving, here is a list of reasons I’m thankful I got sick.Carie Sherman

No, seriously!

I’m thankful for…

The copays I pay … because it means I have health insurance.

The clothes that fit a little too snug … because it means I have access to prednisone, which stops my flares.

A lawn that needs raking and carpet that needs vacuuming … because it means I have a home to take a nap.

The spot I find at the far end of the parking lot … because that means I was well enough to leave home today.

The huge piles of laundry and ironing … because it means I had the sense to rest rather than killing myself over chores.

My stiff body … because it gets me out of doing dishes after big family events.

The alarm waking me up in the early morning hours … because it means I actually slept.

My fatigue … because it’s helped me figure out what really matters in life.

My pain … because it’s helped me have more compassion for myself and others. (Everyone has pain. Pain doesn’t mean you must suffer.)

My fevers … because they remind me to rest, and everyone needs rest.

All of my symptoms … because they made me take a hard look at my life and make changes that benefit, rather than damage, my health.

My struggles … because they remind me I’m strong and remind me that I’m loved.

Please add your own reasons in the comments below. Happy Thanksgiving!


Four Ways to Do More with Less: Applying Business World Lessons to Life with Chronic Illness

 Carie ShermanBy Carie Sherman

The last time I thought about the statement “do more with less,” was back in my corporate life. The sentiment had been thrown around by management for a few weeks when suddenly, our cushy styrofoam disposable coffee cups were replaced with a non-insulated version that burned my hand. I decided then that I hated the prospect of doing more with less.

But today I had a realization: THIS is what lupus asks of a person. THIS is the challenge. Not to sit down and admit defeat and bury ourselves in the memory of our once healthy lives, but to learn how to live with less. I’m greedy. I want to do more, despite having less.

So I consulted the business world and found an article titled “Four Ways to Do More With Less (Really!).” And I stole each idea and applied it to chronic illness. I hope these ideas help you, too.

The Business World Says In Order to Do More With Less, One Needs To…
“1. Specify ‘must win’ battles.”

In business, this means declaring priorities in order to focus on essential, value added tasks. Here’s how I applied this concept:

My priorities: 1) My family; 2) My friends; 3) My business; 4) My writing. All of my essential “to-dos” usually get covered.

Did you notice any missing priorities? I did. “Health” was a no-show on my first attempt at a list. Yet you and I both know that it must be a priority or nothing else will happen. So I added a few items that contribute to my overall physical and mental health: 1) Seeing my docs and taking my meds; 2) Eating right; 3) Exercise; 4) Stress relief.

The term value-added makes me crazy, but in this case it almost makes sense: I can add “value” to each task by thinking strategically. For example, I could take my little girl to the Farmer’s Market for fresh veggies and family fun. I could skip happy hour and hike with my BFF. I could use my calendar better so my deadlines, appointments, and refill reminders are all in one place. And in that same calendar, I could schedule meditation breaks and writing time.

How can you add value to your day-to-day tasks?

“2. Avoid the trap of routines…evaluate work processes regularly to ensure that they’re aligned with changing work demands.”

Back when I had to leave my house to go to work, I had a morning routine. I’d wake up at the last minute to rush out the door and to rush to my desk. I’d eat what hadn’t spilled of my made-for-car-breakfast (using our regular plates, which infuriated my husband) and wash it down with a paper cup of coffee while responding to each and every email in my inbox, checking the news, and clarifying my day’s priorities.

Now that I work from home, I no longer eat breakfast in my car. But I held on to this routine, and it has to go. I’m most creative, energetic, productive in the hours before 9 a.m. Tasks that would take me three hours at 3 p.m. take me 30 minutes at 7:30 a.m. Yet more often than not, I fall back into this routine. It wasn’t effective then…it sure as heck isn’t effective now.

What do you do out of habit that keeps you from being effective?

“3. Treat training as a process, not an event.”

At first I thought this wasn’t applicable. The line for “training” in my freelance business might as well say “there’s always next year.” But then I realize how much I missed this aspect of my corporate life. It was filled with education and training. I took classes on computers, on productivity, on design, HTML. Heck, I got a graduate degree.

But my illness has given me a whole lot of life lessons in a short period of time. And one thing I’ve noticed (and I’m sure you have, too) is that I take steps forward. Then back. It’s not Diagnosed and Done. It’s lifelong learning when there is no cure.

“4. Provide ‘specific freedom to act’…clarify the scope of employees’ authority, so that fear of overstepping boundaries doesn’t become a disincentive to taking risks or making even-simple decisions.”

Chronic illness is a boundary. And, it’s a scary boundary. I don’t have a boss giving me “specific freedom to act.” But today, I’m giving myself permission to better understand the boundaries my illness has given me so I can stop living in fear of my body. I still have the authority to act and take risks, and so do you.

I never thought I’d look to the business world for advice, but these tips made me think about ways I can be smarter with the energy I have. Now tell me, how have you learned to do more with less?