spoonie community

Am I a Spoonie?

Posted on by Wendy Kennar

“Choosing to define yourself as a spoonie is an individual decision. It is not a medical term bestowed upon you by someone else. Other terms, such as disabled and chronically ill, are assigned to us by those in the medical field. No one will call you a spoonie, until you decide to call yourself one. Being a spoonie was fine for others, but I didn’t think it applied to me. Until there was no denying that it did.”

The paragraph above is excerpted from my personal essay, “Am I a Spoonie?” which I’m proud to share was recently published in FLARE Magazine. From the website: “FLARE was named after autoimmune flares one gets when they are chronically ill and a play on the word “flair” for writers to show their “flair” despite the “flares” they encounter.”

Click here to read “Am I a Spoonie?” in its entirety.

For my chronic illness friends, do you consider yourself a spoonie? Or is there another term your prefer? Please share if you’re comfortable!

It’s a 24/7 Job

Posted on by Wendy Kennar
It's just me - using my (invisible) superpower

My son returned to school on Monday after his week-long spring break. It was nice to have a change in my routine and be able to sleep past 6 am.

But his spring break, along with my husband’s days off work (timed to coincide with our son’s week off), just amplified what I am always aware of but generally don’t call attention to — when you live with a chronic illness, you never get a day off.

This is not to say that things are all the same, across the board, for everyone who lives with a chronic illness. Because that’s not the case at all. Medical conditions and health histories differ from person to person. 

However, I think it is fair to say that, for the most part, all chronically ill folks are dealing with a lot on a daily basis:

– overseeing medication: keeping track of when to take the meds, refilling the prescriptions, making trips to the pharmacy to pick up prescriptions and/or arranging to be at home to sign for and receive mailed prescriptions. 

– keeping track of symptoms: looking for patterns between what we did and how we feel. Or patterns between what we didn’t do and how we feel. Or patterns between how we slept and how we feel. Or patterns between what we ate and how we feel. Or patterns about what we didn’t eat and how we feel. You get the idea.

–  managing finances: writing checks to cover co-payments. Making credit card payments towards the expensive, insurance-didn’t-cover-the-full-amount, most-recent, doctor-recommended scan. 

– scheduling: consultations, evaluations, and follow-up appointments. Figuring out days and times for routine lab work. Keeping track of what you can and can’t do before each appointment or medical test. Fasting before some labs, but not all labs. 

– fatigue: it’s not feeling tired. It’s not even being exhausted. Because those are temporary. With a good night’s sleep, general tiredness and exhaustion disappear. Chronically ill folks live with fatigue that is not related to the amount of sleep you get each night. It’s the awful feeling of waking up feeling absolutely un-rested and completely drained and knowing you still have the whole day ahead of you.  

– dealing with side effects: every medication comes with a long list of potential side effects. Some are common, such as constipation and diarrhea (for which you may need medication to help with those side effects, even though those symptoms were caused by medication in the first place). Generally, any possible, unpleasant side effects are deemed worth it by the prescribing doctor. In other words, the possible good outweighs the possible bad — including weight gain and hair loss.  

And there’s one more thing. Something I think most people aren’t even aware of. 

Everyone I know who lives with a chronic illness, also lives with a superpower.

What’s the superpower? you wonder. I’ll tell you:

Pretending we’re well, when we’re not. 

Someone living with a chronic illness and/or chronic pain is never faking being sick. Instead, they’re actually faking being well. 

Every day.

Hoping For a Change in the Program

Posted on by Wendy Kennar

Last week, I saw my rheumatologist for my three-month check-in appointment. 

You’d think by now that I wouldn’t be surprised or disappointed by the way these appointments tend to go. 

But I am.

I’m still holding out hope that one day, at one appointment, a doctor will look me in the eyes and recognize my daily experience and my effort, as I navigate my life with a chronic illness causing chronic pain. 

This fantasy doctor will listen to me, really listen, when I explain that my days are challenging. That my family has noticed changes in me, and the truth is, my physical capabilities are not what they were, even just a couple of years ago. This doctor will acknowledge my tears as I explain how everyday tasks, like getting in and out of the car or going grocery shopping, are no longer things I can easily do.  

This fantasy doctor will look at me and say:

“That sounds really hard.”

“I realize it’s frustrating, not knowing how you’ll feel when you wake up each morning.”

“I know you’re trying to be the best version of yourself for your family.”

“Good for you for keeping up with your physical therapy exercises at home.”

“It’s fantastic that you continue to move your body and go on your daily walks.”

“I can see you’re trying to implement small changes. That’s great.”

But that’s not what happened at last week’s appointment. Instead I sat on the exam table where my doctor proceeded to move and bend my leg in ways it doesn’t usually move or bend. 

I left the office in more pain than I had when I arrived. 

I dealt with high levels of pain for the next two days. 

And in three months, I get to do it all over again.

I Gave Myself a Time-Out

Posted on by Wendy Kennar

Why am I smiling? Because I'm proud of myself. Giving myself a break was, is, a big deal.

For some reason, this week’s blog post felt hard to write. I think it’s because there’s so much going on — within our home, within our family, within our world. And sometimes, it just feels like a lot. Like too much, actually. Like I really wouldn’t mind if we could somehow press pause on the day, and I could just have a day to try and catch up. Catch up on emails and podcasts and magazines. Catch up on sleep and watching laugh-out-loud movies. 

Of course, life doesn’t work that way. 

But last week, I did do something that was my version of a brief pause. A kind of time-out.

Last Wednesday morning, I went to physical therapy. The session went well, and my physical therapist was pleased with my progress. When it comes to walking on the treadmill, both my speed and my stamina have increased over the months we’ve worked together. Those improvements don’t necessarily transfer into less pain; however, those improvements do mean my legs, especially my left leg, is “strong enough.” Because the week before physical therapy, while I went for one of my neighborhood walks before my son’s dismissal from school, I had an “incident.” I was in the middle of walking around the block, when a sudden pain shot through my left leg. It was the type of pain that made me stop and look around, searching for something I could lean on. The type of pain that brought tears to my eyes. I paused for a couple of minutes, but then what else could I do but continue walking? I had to get back to the car. And I did. (I also had really bad pain the rest of the day.) It was super scary, honestly. When I told my physical therapist what had happened, he of course had no magic solutions to offer. But he did tell me that my body is strong; I’ve been doing the work. And even though the pain felt awful, even though I limped the rest of the walk back to the car, I got to where I needed to be. My body, my legs, are strong enough to do what I need them to do.

But, my body is also tired. And sensitive. And worn-out. 

So Wednesday afternoon, after physical therapy, I did something I don’t usually do. I didn’t come right home so I could get back to work on getting things done on my to-do list. I had a post to work on for MomsLA.com, greeting cards to write out, gifts to wrap, bills to pay.

But instead of coming home, I took myself to our neighborhood cafe. I ordered a cafe mocha, sat at a table that was neither in the shade nor in the sun, and I read two chapters of my novel. (By the way, reading Katherine Center’s The Rom-Commers and really enjoying it!)

It might not seem like a lot to some people, but for me it was. It was me taking time for myself. Doing something because I wanted to do it. Not because I felt I should. Or because it had to get done. But because I wanted to do something purely for the pleasure it brought me. 

And I’m so glad I did!

How about you, dear readers? What was something you did recently just for you? Feel free to share in the comments. 

Please note: I am including a link to buy the book that I’m highlighting this week. If you use my link, I do make a small commission on your purchase at no additional cost to you. I am working with Bookshop.org which also sends a portion of the profit to support local, independent bookstores.

My 2nd Spoonie NaNoWriMo

Posted on by Wendy Kennar

Last year, I wrote about my experience completing a very personalized Spoonie NaNoWriMo. (You can read the post by clicking here.)

Here I must pause to give credit to my friend, Sandra Postma. It was because of Sandra’s Instagram posts that I created my own version of NaNoWriMo last year. I never would have done it without Sandra’s encouragement and her advice that as spoonies we needed to create our own personal versions of NaNoWriMo that work for us.   

So this year, when October wrapped up and we made it through a relatively quiet Halloween (only one trick-or-treater this year), I knew I wanted to do my Spoonie NaNoWriMo this year, too. 

I followed the same format as last year. 

I completed a five-minute writing exercise each day. Sometimes that meant I used the time to generate ideas for an upcoming submissions call. Other days it meant I used a writing prompt to jumpstart my writing. And other days I used my five minutes of writing time like a journal, to record what I was thinking and/or doing that day. 

And maybe, even more importantly, was the self-praise component. I took a few minutes each day to reflect on my physical strength and all my body continues to do, even though my levels of pain and fatigue are higher than last year. 

But, if you look closely at the photo of my sticker-decorated November calendar, you’ll notice I missed one day — Thursday, November 28th. Thanksgiving.

I didn’t notice my mistake until the following day, and I must admit, I was disappointed and upset with myself for “messing up.” But it was done. I could have cheated, I guess, and done an extra 5-minutes of writing on Friday, November 29th and written down something my body had done on Thanksgiving Day. Then I could have placed a sticker in that empty calendar box. 

But that wouldn’t have been right. The truth was, in addition to being busy cooking with my family, Thanksgiving was a day of complicated emotions. And painful knees. And somehow I had gotten distracted and forgotten to do my NaNoWriMo activities. 

  And that’s okay. Because I did my best. 

And when I read over the self-praise log I kept throughout the month, there’s no denying I’m doing a lot and trying my best. Every single day. 


I Am Tired.

Posted on by Wendy Kennar

Eleven years ago, my personal essay “Do What You Need To Do” was published in the anthology Lessons From My Parents:100 Shared Moments that Changed Our Lives. I wrote about the example my parents set for me, the idea that sometimes you just have to suck it up, do the hard thing, keep going. 

That’s largely how I have lived my life. Doing the hard thing whenever I have to in order to achieve my goal — whether it was commuting on public buses for most of my college years (a roundtrip commute that took 3.5-4 hours a day, on six buses a day) or working as a kindergarten teacher during the day with an emergency teaching credential and taking online classes at night to earn my full teaching credential. 

It’s pretty much how I go about my day. Things need to be done. I just need to do them. 

Except, I’ve come to the slow realization that I just don’t think I can keep doing that. 

Because — I am so tired. 

I am tired of waking up each morning, feeling unrested. Sticking my feet into my slippers as the alarm goes off, wondering how I’m going to do it. How I’m going to wake up, get dressed, make my son his breakfast, take him to school, and function throughout the day.

I am tired of not reading as much as I’d like to each day. Which as I write that sentence, I realize it’s not completely accurate. I do read a lot each day. I read emails and text messages, newsletters and first drafts. I just don’t always take a half hour and sit and read my book. Sometimes it’s because I’m in pain, and I can’t get comfortable to sit for an extended period of time and lose myself in the words on the page. Sometimes it’s because I feel there’s too much work that needs to be done for me to take a break and read. When I read in bed shortly before I turn off my bedside lamp for sleep, I inevitably start to doze, and the paperback book slips from my fingers and startles me as it falls against me. (One of the reasons why I generally prefer paperbacks to hardcovers.)

I am tired of looking at myself in the mirror and not fully recognizing the woman looking back. I take stock of the physical changes — hair loss, weight gain, swollen ankles — and realize I have no idea which of my ailments is contributing to each symptom. For example, the hair loss I’m noticing could be due to one of my medications, or my longer hair, or menopause. 

I am tired of clicking on my inbox and feeling so far behind in reading my emails. How did I become someone with three hundred unread emails? Seemingly overnight, I have multiple Substack notifications, emails asking for donations for Unicef, Save the Children, and Make-a-Wish Foundation, and emails regarding the latest sale at Bath and Body Works. I want to support other writers and read their newsletters, I want to contribute  funds to worthwhile organizations, and I want to buy candles when they’re on sale. But it’s so much. 

I am tired of feeling like I’ll never catch up. The list I keep of podcasts I want to listen to (Moms Don’t Have Time to Read Books with Zibby (Owens), Kate Bowler’s Everything Happens, Write-Minded with Brooke Warner) just keeps growing. I listen to one episode over the course of a couple of days while I do my physical therapy stretches and exercises, but in that time, I have added another two podcasts to the list. I sit on the floor in my writing room, looking at all the un-read books I have, just waiting for me, and realize this cubby of mine is almost completely out of space. And yet, I came home with another novel I picked up at the Little Free Library I passed yesterday.

I am tired of waiting. Waiting in line at CVS, waiting on hold to speak to a representative regarding my medical insurance, waiting to speak with someone in my doctor’s office to schedule my next appointment. 

I am tired of the bottles of pills on my kitchen counter. Lining up the bottles based on when I take them — breakfast, lunch, and/or dinner. Keeping track of refills, making sure I have enough to get me through the next several days until the law says CVS can refill my pain medication. Tilting my head back so the large calcium supplement, the most recent addition to my daily pills, will slip down. 

I am tired of heating pads and ice packs. I am tired of propping my left leg up on a pillow. 

I am tired of being in pain. Every. Single. Day.

I am tired. 

Friends, I know it’s not just me. I know many of you reading this post have your own laundry list of illnesses, daily stressors, work-related tasks that you’re tired of also. 

What do you do when it continues to build and you feel like you’re standing in quicksand and being swallowed up by it all? 

Please note: I am including a link to buy the book that I’m highlighting this week. If you use my link, I do make a small commission on your purchase at no additional cost to you. I am working with Bookshop.org which also sends a portion of the profit to support local, independent bookstores.

The F Word

Posted on by Wendy Kennar
I took this picture a few days ago, late afternoon, after doing some of my physical therapy stretches on the bed.

I don’t usually have a problem falling asleep. 

Quite the opposite, actually.

As soon as I turn off the lamp on my bedside table, after another unsuccessful attempt to read a few pages before bedtime (I tend to either drop the book and lose my place or read a bit but then the next day have no memory of what I had read), I fall asleep. 

Usually, I wake up at least a couple of times each night. Though lately, I have experienced a few nights when I only woke up once. And there were even a few nights that I slept straight through. 

Yet, regardless of how many wake-ups I have each night, I am not waking up feeling rested. 

Again, it’s quite the opposite.

I wake up feeling drained. I’m not recharged and ready to take on the day at all. But, I don’t have a choice. The alarm goes off, and it’s time to get going. I need to get up and get dressed and get the show on the road, because my son needs to get to school. I have work to do. Which means I’m forced to function on a blend of automatic pilot and a fight-through, keep-going-no-matter-what, high level of perseverance.

Plus, I have also noticed this unrested feeling isn’t just happening during the week, when wake-ups are earlier and days are busier. Even on a random Sunday, when we have nothing planned and no alarm waking anyone up, I don’t naturally wake up feeling oh-so-rested. 

Doctors don’t often ask about my sleep; however, during my last several follow-up appointments, I have mentioned it to them. I do my best to describe the overall slowness I often feel upon waking. The way my eyelids feel heavy. The feeling of starting the day at a deficit. And because my labs are coming back pretty consistent, because there are no red flag markers, no medical professional seems overly concerned about my tiredness. 

The other day, when I stood in front of the mirror and stared at the dark circles under my eyes, I had an aha moment. 

It seems so obvious, now, but it really didn’t occur to me that this extreme tiredness, this fatigue, is a part of life with chronic pain. This is not unique to me and my UCTD (undifferentiated connective tissue disease). In fact, in terms of my inflammation markers, my numbers have been down. My autoimmune disease is somewhat stabilized, you might say. Which means my medications are working and doing what they’re supposed to do. And yet, I feel awful — every single day.

Because this is not tiredness that goes away with a couple of nights of eight hours of sleep. 

Because this is fatigue, a whole different level of extreme tiredness. 

I don’t usually talk about my exhaustion, and I certainly haven’t written about it. But, I know how important it is to share our authentic experiences, to connect with others who, unfortunately, “get it,” and understand exactly the situation I’m describing.

The other night at dinner, after it was my turn to share some of the highlights from my day, my husband commented that I had gotten a lot done. 

“You’re right,” I said. “Imagine what I could do if I felt rested?”

My Word For the Year – An Update

Posted on by Wendy Kennar
Photos allow us to choose what we share. What you don't see in this photo is my wheelchair. It was the first time I had visited The Huntington Library, Art Museum, and Botanical Gardens using my wheelchair.

Back in January, I wrote a blog post about my word for the year — Share. (If you missed it, you can click here to read the post.) 

2024 certainly isn’t wrapping up just yet, though 2025 calendars keep arriving in the mail. However, we are about three-quarters of the way through the year, and it occurred to me that now would be a good time for a check-in of sorts.

In terms of my writing, I absolutely do share. I consistently write this weekly blog. I regularly write personal essays and submit them for publication. I began querying literary agents in March and continue to do so, searching for that one yes from the right person who will serve as an advocate for my memoir-in-essays and assist me in the publication of my first book. 

When it comes to other areas of my life, my sharing is less consistent. Oftentimes, I revert back to predictable patterns of behavior of holding my tongue and trying not to make things more difficult/complicated/unsettling for those around me. I admit I don’t always honestly, and completely, share how I’m feeling — physically or emotionally. 

Like many people who live with chronic illness and chronic pain, I have learned how to fake it. I know how to downplay my pain so as not to make those around me uncomfortable. I know how to present as a person fully in control of a situation, even though most of the time my body feels very much out of my control. 

Because let’s face it. I don’t often have good news to share when it comes to my pain level or energy level. And I realize it’s frustrating for my loved ones to know I’m uncomfortable (which is putting it mildly, again me not completely sharing) yet there’s not a whole lot they can do to make it better. 

I think that’s one of the reasons I’m a writer. Generally speaking, I have always found it so much easier to share through my writing than through conversations. 

So I continue to write and am grateful I can share here and on my Instagram account, which I have found has an incredibly supportive chronic illness community. Thank you, readers, for being on this journey with me. 

How are you doing, dear readers, with your words for the year? Feel free to share in the comments. 

Stick-To-It-Ness

Posted on by Wendy Kennar
Image credit: Wishbone Words

“I am no longer an educator, and haven’t been a kindergarten teacher in many years. For the last seven years of my career I taught fourth and fifth graders. I no longer think of perseverance in quite the same way as I once did. However, more than ever, I feel like my daily life requires a lot of perseverance. I’m not relying on perseverance because I’m learning a new skill or am faced with one specific event that requires more ‘stick-to-it-ness.’ It is not at all like the period of time when my eighteen-year-old self was learning to drive a stick shift — without popping the clutch or grinding the gears or stalling and having the line of cars behind me start honking when I didn’t immediately get going on a green light. Back then, each practice session ended with me in tears. I remember looking over at my mom in the passenger seat, telling her it was hopeless and we should just stop now, because I would never master driving a stick shift. I was convinced there was something fundamentally wrong with me, since my parents could drive a manual transmission, and I obviously couldn’t. My mom patiently reminded me that driving a stick shift wasn’t easy, and I would definitely learn how, if I kept at it. It was a skill which required time and patience and lots of practice. Perseverance. She was right, as moms tend to be. 
“But that was then.”

This excerpt was taken from my recently published personal essay, Stick-To-It-Ness, which has to do with daily perseverance as it pertains to living with a chronic illness. However, a high level of stick-to-it-ness is also required when you’re writing for publication. This personal essay was rejected by two other online literary journals before finding a home at Wishbone Words, Issue 13. 

You can click here to find out more information about Wishbone Words. 

Chronically Parenting

Posted on by Wendy Kennar

I don’t listen to many podcasts, but I do make a point to listen to Jean Meltzer’s monthly podcast, Chronically Fabulous. (I wrote about her podcast back in January. If you missed that blog post, you can read it here.)

Her third episode featured special guest, Heidi Shertok. Like Jean, Heidi is also a Jewish author, writing rom-coms, and living with chronic illness. Their conversation focused on parenting when you’re chronically ill. 

Jean, Heidi, and I all have different perspectives based on our different life experiences when it comes to parenting. Jean and her husband made the decision not to have children. Heidi entered into marriage and parenthood as a chronically ill woman. And I become ill when my son was two years old. 

There were several moments when I paused the podcast so I could jot down a note, because I knew I would want to write about their conversation and share it with you, readers. Because finding your community is so important, especially when your body doesn’t behave the way you’d like it to. And when I come across something — a podcast, a book, a line in an article — that allows me to feel seen and understood, it’s something I want to share with you as well. 

With that in mind, here are just a few of the highlights from their podcast conversation: 

– Jean and Heidi spoke of the idea of “masking.” I’ve always referred to it as putting on my game face, others might say it’s like having your poker face on and not letting your true emotions out. It’s the idea that on the surface no one can tell how you’re really feeling inside. You keep your pain, your discomfort, your worry out of sight. You present as healthy — because, at least for me, sometimes it’s just easier. It’s easier not to have to explain why I can’t sit on a tall bar stool, for example. (It’s really painful for me.)

– Something Heidi said really stood out to me. She said she believed her kids were lucky, growing up with a mom who is chronically ill. Her kids have learned/are learning there are all sorts of “normals” within families. There is not one right way for a family to be. Likewise, I hope that by growing up with a mom who has an invisible disability, my son has learned that you often can’t tell what someone is going through just by looking at them; that many people are out and about in the world, dealing with pain we can’t see. 

– Heidi also shared something her rheumatologist told her when she was young: A lot of people are like most flowers, you can put them anywhere and they’ll thrive. While people like Jean, Heidi, and myself, and others with chronic illness, are like orchids; we can only thrive in very specific environments. I love that analogy. 

Dear readers, any podcast recommendations you’d like to share? I also sometimes listen to The Shit No One Tells You About Writing (such a great title!) or an episode of Moms Don’t Have Time to Read Books when I’m doing my daily physical therapy exercises/stretches at home.