Pain Awareness Month

(Just a few of my son’s cubes)

September is Pain Awareness Month.

Which kind of feels like a joke. Because, I have a close-and-personal relationship with pain. I am very aware of pain — every month of the year. 

Pain is a part of me — night and day. Weekdays and weekends. It doesn’t even take major holidays off. 

My pain is commanding and assertive. It does what it wants to do, and it doesn’t care if I’m in the privacy of my home or walking to my neighborhood Coffee Bean. 

Or at my son’s Cubing Competition. 

About a year ago, my son became interested in Rubik’s Cubes after watching one of his very good friends solve them. (Who knew there were so many cubes? Some of them aren’t even cube shaped!) This past Saturday, my son participated in his first Cubing Competition which involved five different events. 

The competition was held in a high school gymnasium about an hour away from home. Our family didn’t know exactly what to expect, because since this was our son’s first experience competing, it was the first time my husband and I were spectators at such an event.

There’s a lot of sitting around — on bleachers.

Then there’s a lot of standing and moving around so we could get a good view of our son cubing which would then make for good photos and good videos. 

And that’s when my pain decided to make a grand entrance. During one round, and thankfully my son wasn’t competing at the time, I felt like my leg was about to buckle under me. A strong muscle cramp gripped my left thigh. 

This was new for me. Usually cramps hit me in my left calf. And usually they happen at home. Just a few weeks ago, I had a cramp in my calf during my virtual appointment with my therapist. Sometimes cramps wake me from sleep. At home, I can cry and bang the mattress, bite on the blanket in an attempt not to wake my son. 

But we were at a high school gymnasium, with about 100 participants and their families. My husband and I went outside and found a bench. I couldn’t sit without excruciating pain, I couldn’t stand and stretch without feeling like I was going to fall. I couldn’t walk it off or massage it away. And I couldn’t cry or make a scene, because there were a few other parents outside on their phones and dealing with younger siblings. And, most importantly, my son was inside waiting for us. 

I was very aware of the time, knowing my son’s next round was happening very soon, and I certainly wasn’t going to miss it because of a cramp. 

My husband and I went back inside. Underneath my double masks, I pursed my lips. I tried to take deep breaths and tried to calm myself down. 

I tried to focus on the moment and watch nearby competitors as my son waited his turn. But I had a hard time standing and had to lean heavily on my husband. 

I was aware of my pain. Very aware of my pain. 

And that’s probably one of the hardest things about my Undifferentiated Connective Tissue Disease. The randomness of it. The fact that I never quite know how I’ll be feeling from one day to another. Or in Saturday’s case, from one hour to another. 

As my therapist and I have talked about, the only thing predictable about my autoimmune disease is its unpredictability. 

In my life, Every Month is Pain Awareness Month.

Words Have Power

Words are powerful. What you say, and how you say it, have lingering effects. And I’m not just talking about words spoken to someone else. Also included in this list are the words we speak out loud to ourselves (I’m not the only one who talks to herself, am I?) and the words we think to ourselves. 

We know this. 

But sometimes, something happens that serves as a flashing-light reminder of just how true that is.

Last week, I had two such incidents.

My neighbor and I were chatting and catching up. She’s almost forty years older than me and was talking about some new pain she’s experiencing in her lower back/side area. Thankfully, all x-rays came back fine, no problems identified. She found herself in a situation that I know all too well. Tests are negative, big problems ruled out, but still no answers about what’s causing the pain and no clear direction given on how to alleviate the pain. 

“I tell you, living with chronic pain is no fun,” she said. 

I know.

“I don’t know how you do it,” she said.

I bit my tongue.

She went on a bit, describing the discomfort, and again said, “I really don’t know how you do it.”

I looked at her and said, “I don’t have a choice.”

I do it, I live with chronic pain, because I have to. Because there is no alternative.

And though not her intention at all, and though I’m not fully sure why, her words got under my skin and bothered me. 

The second conversation occurred the next day, during a telehealth appointment with my rheumatologist. Near the end of our conversation, I asked her about a trip my family and I are thinking of taking. 

“We’re thinking about going to Hawaii,” I said. “But I haven’t flown since before my son was born, and he’s 14. I haven’t flown since I have this condition. And I’m worried, because of the blood clot I had after my biopsy.”

(In case you missed it, I had a second biopsy in September 2020. A “routine” procedure that was supposed to provide some answers to my rheumatology team. No answers, and I developed a “very rare” blood clot in my left calf. You can read about it here.)

She answered my questions, told me some things I could do before, during, and after flying. And then she said something that has been on repeat in my head since she said it.

“Oh, go, you need to have some fun.”

And that advice, given with a smile through a screen, was encouragement and validation I hadn’t realized I needed. 

Waves, Walking, and Pain

The boardwalk along Moonstone Beach – Cambria, California

Spring break.

My husband, my son, and me.

A road trip to one of our favorite spots on the California coast.

4 days, 3 nights.  

And pain. Lots and lots of pain.

I started the week with high hopes and lots of gratitude. Last year’s spring break was spent at home. This year, fully vaccinated and boosted, it was possible for us to spend time in one of my favorite places — Cambria, California.

Being in Cambria is good for my soul. Away from my daily responsibilities, away from the noise of the big city (no helicopters, no sirens, no car alarms), I feel calm. Serene.  

The whole time we were there, I kept waiting for the good vibes to kick in. I was waiting for the pain to decrease and fade into the background all together. 

It never happened.

By the time we got home, I was in agony. My legs were beyond hurting. My legs felt weak, as if any moment I might topple over or my knees might suddenly decide to buckle.

Almost 500 miles roundtrip with me as the driver.

Walks and hikes, up to 5 miles each day.

Back at home, back to the responsibilities of bills, laundry, and watering my plants, I felt so disappointed. 

Why can’t my body just work the way I want it to? 

That question came to mind on our first night home, as I stood under our shower, thankful I no longer had to make due with the barely-there water pressure of our hotel. 

A few days later, the answer came to me.

My body did do everything I wanted it to do.

I planned and packed.

I drove and sang. (It doesn’t get any better than driving along a stretch of the 101 while my husband, my fourteen-year-old son, and I all sang along to Hey Jude.

I walked and watched. (We saw elephant seals up close and dolphins from a distance.)

My body did do everything I wanted it to do. 

I have to keep repeating that to myself. 

It might not have been easy or pain-free, and it might never again be. That’s the big difference when you live with a chronic illness and chronic pain. 

But, you make the decision to do it anyway. 

It’s Stressful

There’s been a lot going on these last few weeks. And I’m not even talking about the big scary stuff such as the heartbreaking devastation in Ukraine. 

I’m talking about things in my own little corner of the world. 

I had some medical tests done recently. Here’s the thing about that — it’s stressful. It’s stressful knowing you need the tests in the first place, it’s stressful waiting for the tests (because for me, it took several weeks to get the appointment), and then it’s stressful waiting for the results.

I was very glass-is-half-empty about it.

I was sure these tests would not come back with good news.

I tried to explain my reasoning to my therapist. 

For years now, I’ve had many symptoms that aren’t quite “right.” Not red-flag wrong, but enough to cause a doctor to pause and order more tests, just to be sure, just to rule out something else.

For years now, those tests have all come back fine, or at least, okay-enough. But as I told my therapist, I feel like there are only so many “get out of jail free” cards a person gets. I felt I must have used up my limit by now.

There’s the other part of me that feels as if I’m waiting to be further punished. As if some higher force is looking down at me thinking, “Ha. You’re talking about pain in your leg. You’re saying it’s harder to sit, to stand, to walk, to drive. You think this is bad now. I’ll show you bad.”

But then a friend of mine gave me another way to look at it. 

She told me that the higher power up there figures I have enough going on. This higher power knows I’m dealing with crap (aka pain and the complications that come with chronic pain) every day. So they’re not going to give me something else to deal with. My plate is already full.  

My friend used a few curse words in our conversation that I will leave out of this blog, but she made me laugh, and helped me see things in an entirely different way. 

It’s true. I am dealing with “crap” every single day. Some degree of pain. There are medications to take. Medications to try. Appointments, consultations, labs, scans. Heat, ice. Rest, exercise. It doesn’t stop.

And in case you were wondering, my tests came back with good news. 

13 Ways Writing Is Easier Than My Autoimmune Disease

It all started from a 5-minute writing exercise. I used a prompt from Barbara Abercrombie’s A Year of Writing Dangerously: 365 Days of Inspiration and Encouragement (great book!), and when my timer went off five minutes later, I knew I had written the beginning of something. That first draft went through some significant changes.

13 Ways Writing Is Easier Than My Autoimmune Disease is the final result. 

I’m happy to say it was recently published at The Mighty. You can click here to read the essay in its entirety.

Dismissals and Rejections – of Symptoms and Submissions

“It’s not a realization that came to me easily or early on in my life as a chronic illness patient. It took me several years to finally recognize it and to see what had been in front of me all along.

Not until I marked my submission tracker with that most depressing word, “Declined,” did I make the connection. I realized that having a piece of writing declined and leaving a doctor’s appointment without any answers share many of the same emotions.” 

Those paragraphs are taken from my personal essay, “Dismissals and Rejections — of Symptoms and Submissions,” recently published at Spoonie Authors Network. You can click here to read the essay in its entirety.

4 Reasons Why Chronic Pain Sucks

(This magnet hangs on a board near my desk.)

I’ve been told I have a positive attitude. I’ve been praised for not letting my autoimmune disease take control of my life.

I try. I try very hard to look at the bright side, to acknowledge that things could always be worse, to do the things I want to do pain or no pain.

But, in all honesty, the last couple of weeks have been really bad. Like trying-not-to-cry-as-I-walk-back-to-the-car-after-taking-my-son-to-school bad. 

In our home, we don’t curse. Even words that other families might use, like “sucks,” isn’t a word we use. Except, occasionally. 

Today is one of those occasions.

Chronic illness sucks. Chronic illness that causes chronic pain really sucks. There’s no rhyme or reason to it. For example:

  1. Sleep does not equal less pain.  I rarely sleep through the night. If I only wake up once, that’s a good night’s sleep for me. But the other night I did something I hadn’t done in a long time — I slept through the night. My body had a full night of uninterrupted sleep. I woke up, amazed to realize it was morning. I got out of bed and felt … lousy. Terrible pain. From the moment I woke up until I went to bed again that night.
  2. Muscle spasms worsen everything.  I was sitting at my desk, with the dull pain I’m used to in my left leg. As my son was showering, my left calf began to twitch. And not in its usual twitching spot — more on the inside of my leg. This was the outer side of my calf. My muscle twitched, and I tried to rub my leg. My muscle continued twitching, and I bit my finger. It finally stopped twitching and I had a really hard time getting up from my desk chair. I had an even harder time stepping into my own shower. My leg was tight when I went to bed that night and no different when I woke up with the alarm the next morning.
  3. Rest doesn’t automatically mean relief.  I have been making an effort to take time for myself. To rest. Not in the form of a nap, but sitting outside on our patio, reading a book. I usually spend my days taking care of household chores, dealing with appointments, and writing. But I have been making a conscious decision to set aside some time during the week — when my husband is at work and my son is at school — just for me. To sit in one of my favorite places, doing one of my favorite things. I hoped to notice an improvement — an increase in relaxation, a decrease in discomfort. Nope. Maybe it’s too soon. Maybe I need to do this more often, more consistently. In any event, I got in some extra reading time. 
  4. Pain levels fluctuate.  When I spoke to my husband on one of his breaks, my pain wasn’t bad. It felt so good to be able to say that to him. By the time he called on his next break, about three hours later, it was bad. Pain-pill bad. I hadn’t done anything physically strenuous or anything I could see as a possible trigger (like gardening or standing on a step-stool to reach something on a high shelf in the closet). The pain shifted — from not bad to real bad. And for no apparent reason. 

What Doesn’t Kill You

Once in a while you come across a book and you suddenly have this urge to buy cartons and cartons of this book, plant yourself on a busy corner, and pass them out to everyone who walks by.

This is how I feel about Tessa Miller’s What Doesn’t Kill You: A Life with Chronic Illness – Lessons from a Body in Revolt.

While our chronic illnesses and experiences are vastly different, the book is so very relatable. The bottom line is everyone living with a chronic illness and everyone who knows someone living with a chronic illness, should read this book. 

I don’t remember how I first learned about this book. But I do know that this is one of the few books I have bought sight unseen. I bought it based on what I read about it. I bought it because I had a desire to read something by someone who “gets it.”

And Tessa Miller gets it:

“I needed a book written by someone who exists in that foggy space between the common cold and terminal cancer, where illness doesn’t go away but won’t kill you. I needed someone who lives every single day with illness to tell me that 1) I wasn’t alone and 2) my life was going to change in unexpected, difficult, and surprisingly beautiful ways.”

“I didn’t know then that my life had changed forever. That I’d be able to divide my experiences into before I got sick and after I got sick.”

“I became a professional patient, and a good one. I learned that bodies can be inexplicably resilient and curiously fragile. I would never get better, and that would change everything: the way I think about my body, my health, my relationships, my work, and my life. When things get rough, people like to say, ‘this too shall pass.’ But what happens when ‘this’ never goes away?”

“And they shouldn’t doubt the level of pain you’re in just because you’re not writhing around on the floor; chronic illness patients learn to live with a shocking amount of physical discomfort and often go about it looking natural.”

“But grieving yourself when you’re diagnosed with a chronic illness is different. The emotions might be similar to those felt when mourning a loved one—anger, sadness, numbness, disconnection from reality —but the process of ‘moving on’ is more complicated. Whereas the loss of a loved one has a sense of finality, the loss of self from chronic illness can feel never-ending.”

“See, chronically ill people grieve two versions of ourselves: the people we were before we got sick and the future, healthy versions that don’t exist (or, at least, look much different from what we’d imagined). There’s no guidebook for this kind of ongoing self-loss. No Hallmark card that says, ‘Sorry you’ll never be yourself again.’ “

“Your body and your brain are not two separate entities. They’re a partnership. What happens to your body affects your brain, and what happens to your brain affects your body. Taking care of your brain’s health should be no less of a priority than taking care of your body.”

“ ‘God doesn’t give you more than you can handle,’ as the saying goes. But that isn’t the way it works at all. Some people have more suffering, and some have less, and there’s no rhyme or reason why. Bad stuff happens to good people with no other explanation than it just happens. Little babies die suddenly and horrible old billionaires live to see 105 and decent people get sick forever. Shit will never make sense.”

“And despite what the writing of a memoir signals, I don’t love to talk about myself IRL; the page makes me appear much braver than I am. But despite the fear, I keep sharing my stories through writing because that’s how humans connect and stay alive. Stories give us empathy. They make us strong. They offer perspective.”

Singing Out Loud Helps Ease My Chronic Pain (At the Risk of Embarrassing My Son)

“Little does Ryan know that when I drive to school to pick him up, I’m usually rocking out. If I can’t find a good song on the radio (I like the spontaneity), I’ll play one of our mixed CDs. Ryan says the fact that our car plays CDs and doesn’t have an auxiliary jack for my phone makes it old – another faux pas.”

The paragraph above is taken from my most recently published personal essay, “Singing Out Loud Helps Ease My Chronic Pain (At the Risk of Embarrassing My Son)” which was published at Moms Don’t Have Time to Write.

Click here to read the entire essay.

How’s My Health?

(I may be in pain, but it’s fall, and a star-shaped leaf in my yard makes me smile)

The other day my next door neighbor asked, “How are you? How’s your health?”

I really wasn’t sure how to answer her. The short answer, and what I told her, is “Okay,” because I am okay-enough. I’m getting things done on my to-do list, keeping up with all my obligations, meeting all my writing deadlines, making dinner each night. 

But the truth is it’s been a rough couple of weeks.

And sometimes I’m not so sure I really am “okay.”

The pain has been pretty intense. The other night when my mom and I were chatting on the phone, she asked me if I had done something that might have contributed to the bad pain day I was having. (I think she meant something like take a long walk or gardened for an extended period of time.)

I told her the truth. “I woke up.” 

I woke up with bad pain. It stayed all day. Totally out of my control.

I’m also awaiting test results which is never an easy situation to be in. On the one hand, I never want doctors to find something new – which in my head means something scary, something bad. But on the other hand, if something did show up, maybe it would alter my treatment plan which would then maybe lessen my pain. Maybe it would give doctors an answer, so I wouldn’t have to hear, “We don’t know why…”

I received my booster for the covid vaccine. Which leaves me feeling oh-so-grateful to the researchers and scientists and medical professionals who made that possible. (And I feel badly, because I forgot to bring the nurse a snack. Each time our family has gone in for  a covid vaccination shot, we’ve given the nurse a snack – a granola bar or bag of chocolate-covered almonds. It was a small way of saying “thank you,” and “we appreciate you.” But I forgot the snack at home on that Friday morning for the kind nurse who gave me my booster and chatted with me about books.) 

And I almost fell. Twice in one week. Both times at night. Both times in my son’s bedroom – once before we read and once after we had read. I kind of flopped onto my son’s bed the first time and grabbed onto my husband’s arm the second time. But the incidents left me feeling shaken and scared.

So how am I? How’s my health? 

It could be worse. 

But it certainly could be better.