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.Dad 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!
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 the 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.
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!
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.
“My doctor thinks I might have lupus.” It’s a statement I’ve heard many times from various family and friends over 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.
- 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.
- You’re going to pee in a cup every time. Time your liquids well.
- 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.
- 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.
- 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.
- 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…
- 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.
- 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.
- 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.
- 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.)
- 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.