I Have a Hard Time Asking For Help

The 2016 Lupus Colorado Community Walk was a couple weeks ago. Prior to Carie Shermansaid walk, I surprised myself: I pledged to raise money.

I knew that I’d need to ask people in my inner circle for money. It felt like I was asking for help. And I don’t like asking for help.

It made me feel really exposed.

I might seem like someone who is totally cool with expressing my deepest and darkest. For the most part, I am! Just as long as I’m expressing myself to strangers. And when I write this blog, I picture the audience as strangers. (Strangers with whom I have a common identity thanks to this massive pain in the rear end called lupus.)

I don’t write this blog for my healthy friends, family, and colleagues. So asking them to give me money is like admitting to the world that I’m sick and can’t do it alone.

Unless you’ve physically spent more than a few hours with me at any given time, I probably don’t seem sick. My illness has made me an excellent planner and an excellent faker. When I see most of the friends, family, and colleagues I solicited money from, I’ve planned and napped and drank more coffee than I should have. I’ve over-applied mascara and bright lip-gloss and, applied a bucket of concealer on the dark circles under my eyes. I’ve rearranged my day as much as possible to give them my very, very best.

But here’s the funny thing: I asked for help; I asked for pledges; and so many people responded. So I’m writing this post to say thank you, from the bottom of my heart. First to my husband, who wrote what he wrote on his race bib and made me fall in love with him all over again. Next to my team—who gave up their Saturday afternoons and showed up with smiles. Janellen, Sarah, Kelli, Deb, and the little people:  You’re awesome. Third, thank you to everyone who donated. Your generosity stuns me. The nice words you included along with your donations were the ice cream on my gluten free lemon-ricotta pancakes. I raised three times—THREE TIMES—more than my goal!

So, to all my colleagues, friends, and family who donated to the lupus walk, thank you.

And to those people who are closest to me, the ones who routinely spend more than a few hours with me, the ones who routinely see my broken bits and love me anyway, thank you for supporting my walk. And for holding all my shattered pieces together in a way that’s more complete than had I never been broken by lupus at all.

The 2016 Lupus Colorado Walk raised $40,000 – well over their $25,000 goal – and every penny stays in Colorado to help people living with lupus. Thank you!

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.



11 Things to Expect When You’ve Been Referred to a Rheumatologist

“My doctor thinks I might have lupus.” It’s a statement I’ve heard many times from various family and friends Carie Shermanover the last few years. And my first response is always, “was it your primary care doc or a rheumatologist?” If the answer is primary care, my next response is always, “don’t panic!” It’s a long road from thinking you may have lupus to being diagnosed.

If you find yourself in this club, here is a list of 11 things you can expect along this journey.

  1. They take a lot of blood. A LOT. And if certain markers are present in the first round of testing, or a lab value needs to be quickly confirmed, you’ll be coming back another day to give more blood. I’m lucky to live within walking distance (yeah, I still drive every time)–which is great. If you live in an area that lacks specialty care, you’ll be driving. A lot.
  2. You’re going to pee in a cup every time. Time your liquids well.
  3. What shows up in your blood work can automatically “include” you as someone with autoimmune disease (or disease potential). But even if your blood work turns up nothing, and you still feel a certain way, they’ll want to see you again, and they’ll help you uncover a cause. My bloodwork brought me into the club, but since then I’ve had mostly normal labs. A lot of my aches and pain stem from fibromyalgia, which doesn’t show up in bloodwork.
  4. The blood tests will make no sense (unless you’re a medical doctor). Be prepared for words like antiphospholipid antibodies, DsDNA, Lupus Anticoagulant, RA factor, ANA titer, ESR, Sed Rate…I could go on. Be sure your doctor explains your results well, and don’t be afraid to ask a lot of questions. If markers are showing up that indicate autoimmune illness, bring a friend with you. Having another person in the room as another set of ears is immeasurably helpful. This website helps.
  5. Sometimes your doctor will see a clear cut diagnosis in your test results. But it’s likely that they won’t. If your results show certain factors and lupus is suspected, keep in mind there is no single test to diagnose lupus. Your diagnosis will be based on a number of factors.
  6. If lupus is suspected, you’re going to feel like a guinea pig. You will work with your doctor to come up with a treatment plan. You’ll talk about medications, lifestyle adjustments, supplements, and support networks. You might get put on prednisone right away. But another big part in the beginning of this journey is getting referrals…
  7. You’re going to be referred to specialists. My doctor recommended I see a neurologist and cardiologist. I had a bunch of scans and learned I was claustrophobic seconds into being inserted into an MRI machine. I also did two sleep studies. Because Plaquenil is one of the first drugs they’ll try, I needed to see an eye doctor (although it’s well-tolerated, a small percentage of people have eye issues). Lupus is a systemic disease and multiple system involvement (even the potential for) will require seeing multiple specialists.
  8. You’ll be spending a lot of money. It is what it is. Be an active participant. Consider your doctor’s advice and try to understand risk factors. On more than one occasion, I’ve asked my doctor to triage his recommendations so that I could afford it. He outlined the Must Do’s first, then gave me my What’s Next options. It helped.
  9. Prepare to get a second opinion. You’re not cheating on your doctor. Most, if not all, would encourage you to get a second opinion.
  10. You’ll be creating a long term relationship. Make sure you like and respect your doctor, and make sure they connect with you and show you equal respect. Consider personality types and gender. I see my rheumatologist more frequently than I see my parents. I’m stuck with my parents (haha). I have a choice in my doctors. (I live in a major metropolitan area. I realize if I lived with my parents in their rural community, I would need to take whatever doctor I could get.)
  11. Your doc alone won’t make you feel better. It takes a team. When I started this journey, I erroneously thought that my doctor would give me medicine, I’d take it, and I’d be better. I’ve never been so wrong.  Autoimmune disease requires lifestyle changes that you may not be willing, able, or ready to make. You’re going to get to know yourself. Really well. It’s on you to get enough rest and reduce your stress. I’ve been doing this since 2011, and I still haven’t mastered it. But I keep trying.


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.