Click below to view and/or print the Lupus Colorado January Newsletter.
Click below to view and/or print the Lupus Colorado January Newsletter.
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.
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!
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.)
Don’t worry – a fake laugh works just as well as a real one!
A few years ago, my husband gave me a set of pearls. It was a big deal. First, most of my jewelry up until this point had been purchased on the 3 for $10 rack at Claire’s Boutique. Second, years prior, he’d splurged on a set of diamond stud earrings. Which I lost, only months after receiving the gift.
Now, my husband is a generous, kind man. But he doesn’t mess around with me being irresponsible. He once made me carry a suitcase across the airport that practically weighed as much as I did, simply because he told me not to pack so much. (He was totally right. You definitely don’t need two pairs of boots and three sweaters when you travel to the southern-most part of Florida.)
So, the pearl earrings were a big deal. I’ve been excessively careful each time I’ve worn them.
That is, until I wasn’t.
It was January of 2012. I was still reeling from the loss of my former healthy, non-lupus-like-illness life. I was still in the business of “fighting” my disease. I’d been throwing punches like a champ. But no matter how hard I fought, no matter how much I didn’t give up, no matter how many doctors I saw, I kept getting sicker.
My fight was taking a toll on me–physically, emotionally, even socially.
Around that time, my dear aunt visited. Now, this is my “woo-woo” aunt–the one who loves crystals and massage and natural whole foods and the Divine. I was a recovering Catholic. Recovering, because through my lens as a child, I only saw the angry God. I totally missed the whole “loving and forgiving” part of the Bible and my parent’s teaching. (I sometimes wonder if this was the same kind of distorted thinking that led me to my depression and yes, maybe even lupus.)
She brought with her this book: Outrageous Openness by Tosha Silver. Now, talk about “woo-woo.” This lady was OUT there. I could tell the instant I saw her picture on the back cover.
I remember telling my aunt earlier that day about how in catechism class as a child, my teacher taught us to pray in terms of “thy will be done.” I found it to be complete and utter BS. The God I felt compelled to believe in would surely value my will.
So there I was, sick as a dog. It was snowing–one of those highway-shutting-down storms that forces Chinese food delivery drivers across the city into overtime. I was stuck in my recliner. And bored. So I picked up the book.
Much to my surprise, Tosha was kind of funny. And engaging. And soon a few hours passed and I’d finished her book, a compilation of stories about her love affair with the Divine.
She spoke of a message of surrender. Of letting the universe do its work. Of offering your struggles to something higher than your rational mind can comprehend.
Something in my head clicked. I’d spent the last six months of my life in the fight of my life. And all that I’d achieved was becoming sicker.
It was the kick in the pants I needed. A few years before Elsa and little girls everywhere dreamed of singing, I began to Let It Go.
I spent more time doing yoga. And meditating. And repeating to myself time and again that the universe wanted me to be happy. And ever-so-slightly, things began to shift. I was suddenly finding myself connected to the right doctors, the right medications. I started feeling better. Physically, emotionally, and socially.
Until months later, AKA the day I lost my pearl earring.
It had been a rough day. I’d put myself out trying to snag a new client, and I failed. I had a hard night of parenting. I burned dinner. It had all the makings of a terrible night.
But now I knew what to do. After all, the universe wants me to be happy! So I spent the hours after my child went to bed ignoring my husband and immersing myself into a yoga and meditation marathon.
I patted myself on the back for taking control of my day. I was an active participant in the Game of Life. I was WINNING.
I hopped into bed in a blissful state that was quickly interrupted by the back of my earring stabbing me. I removed said earring, and grabbed at my other ear.
The other earring was gone.
I hopped out of bed with a speed unseen in most lupies. I began tearing through my room, dumping laundry hampers, bulldozing through my closet, rifling through trashcans. My inner peace had left the building. I went from Zenned-out hippie girl to enraged, over-caffeinated, gun-toting, road-raging crazy person in a span of 30 seconds.
I’m not sure how long I searched. But it was all in vain. My pearl was nowhere to be found.
Suddenly, Tosha’s voice whispered in my ear. “If something is yours by divine right, it can never be lost. Surrender.”
My body didn’t have enough left to keep up my fight. I laughed at myself, and how I’d fought so desperately for my Zen moment, only to let myself get worked into a tizzy nearly instantaneously post-adversity.
Had I learned anything?
I sat down. I gave up. I spoke directly to a higher power, saying, “If this earring is mine, it can’t be lost. I have faith in its return. If it doesn’t return, it wasn’t meant to be mine.”
My heart rate returned to normal. I unclenched my teeth. I went to sleep.
The next morning, I woke up to my daughter singing to herself. With a smile, I entered her room. But my smile turned upside down. Just two steps in, I stepped on something sharp. I began to cuss what was sure to be a Lego piece that had somehow been missed during nightly clean up. If you haven’t experienced the pain of stepping on a Lego, you simply haven’t experienced pain.
There was my pearl earring, stabbed into the skin between my foot and big toe.
Cue Twilight Zone music.
Back to the present. I’m once again going through a hard time. And by hard, I mean devastating. It’s nothing I can or will speak of in specific terms, but suffice to say that I’m currently being carried along by friends, family, and way more caffeine than one person should drink. To you all (I’m looking at you, too, Starbucks barista), I again say thank you.
This situation feels impossible. I’m doing my best to stay positive, to give it up to God or the Goddess or whatever higher power I feel most connected to, and to trust and have faith that all parties involved will emerge stronger and happier than ever before. Including myself.
But it’s hard. It’s so dang hard.
Cue reminder from the universe.
I’d just gone to lunch with my parents. I wore my pearl earrings. I came home and decided to take a nap. I went to remove my earrings. One was missing.
I felt like panicking. I felt like tearing the room apart. I felt like throwing something very heavy and breaking something just to watch something shatter. Instead, I remembered the lesson I’d already learned. I gave up my fight. I announced that if the earring was truly mine, it would be returned. I took my much needed nap. I awoke, with a strong urge to fall into child’s pose on the yoga mat that has parked itself next to my bed. I reached my hand under the bolster I use for yoga.
I pulled out my pearl earring.
I sat for a long while. I cried. I again gave up my devastating problem to the universe. I recognized that a problem of this magnitude could never be resolved as quickly as a lost earring. But I still needed to have faith.
If the universe has my back on small matters, it has my back on the big stuff, too. I just need to wait.
Here’s to surrender, my friends in lupus. May surrendering to your circumstance bring you the comfort and healing you need and deserve.
Thank you, Aunt Soy.