autoimmune disease

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?”

Pain Awareness Month

Posted on by Wendy Kennar
You can't see my pain, but it's there.

September is Pain Awareness Month. It’s a topic I have written about before: 

In 2020, I wrote about how common it is for my pain to fluctuate, which is why I so dislike the traditional 1-10 pain scale.

In 2021, I again wrote about the difficulties in using a traditional pain scale to describe my chronic pain. (Plus, this post has one of my favorite pictures of myself – because I’m holding a bunch of bright, beautiful sunflowers – my favorite flower, and because that photo makes me think back to that fun family day.)

In 2022, I wrote about the randomness of my pain; the fact that I can sit and watch my son at his first Rubik’s Cube Competition and out-of-nowhere suddenly need to step outside because of an intense leg cramp.

In 2023, my son inspired my Pain Awareness Month blog post (as he’s inspired many of my blog posts and personal essays over the years).

Which brings us to this year’s post:

For the last year or two, each time I see my rheumatologist I have told him how much I struggle to get through my day. I have given him concrete examples to demonstrate that my chronic pain has worsened, my energy levels have lowered, and my fatigue has increased. I have told him that my current pain medications were not enough, yet he refused to alter my dosage or prescribe anything else. Finally, he referred me to a pain management doctor. (This isn’t the first time I’ve seen a pain management doctor, but it is the first time I have been seen by this particular doctor.)

At the first appointment with the pain doctor, back in April of this year, I walked in with a fair amount of skepticism. How many times have I had to share my story over the years? How many times have I tried to convince doctors that regardless of how I look or how much I tell you I still do each day, I am in considerable pain every single day? I didn’t want to have to sell myself, convince this new doctor that my pain was worsening, that my list of activities I could no longer do was growing, and I was scared because I truly didn’t think my current lifestyle was sustainable.

Something completely unexpected happened during that April appointment — after reviewing my in-take forms and my current medications, the doctor looked up from my chart and looked right at me. 

“You’re not on the right medication. What you’re taking now isn’t going to help with the kind of pain you’re describing. You definitely need something stronger,” he said. 

I was momentarily shocked. Cue the party favors and the large round of applause. The doctor’s statements, his belief in me and my pain, were huge. My chronic illness friends reading this know that this is not always the way a doctor’s visit goes. 

Since that first appointment, we’ve tried different medications and different dosages, and I think we’re getting closer to finding the right combination for me. 

At the same time, the doctor has been honest with me. 

“Nothing is going to completely get rid of your pain. The goal is to bring your pain levels down. Way down,” he said.

We’re working on it. 

So this year during Pain Awareness Month, if I may, I offer this suggestion — believe someone when they tell you about their pain. You cannot always see pain. You don’t always know what someone is going through or dealing with simply by looking at them. So give them the benefit of the doubt. Treat everyone with a bit more patience and care. Because whether it’s physical pain or mental pain, chronic pain or temporary pain, everyone is dealing with something.

Questions and Clues

Posted on by Wendy Kennar

I sign up for many writing-related webinars (mostly free, though some are fee-based), and I like to watch interviews with authors on YouTube. I consider myself a life-long student, and have found the writing community to be very generous when it comes to sharing information and advice and encouraging other writers. 

I attend these webinars and watch these videos in my quest to learn more about building a writing career. As I continue to query literary agents, I have been learning about establishing and maintaining an author newsletter (something I plan to do in the future, so stay tuned!), creating a readership, and the different types of marketing options available for writers. 

A couple of weeks ago, I watched two different writing-related videos, featuring two different authors, and both videos left me with questions I haven’t been able to stop thinking about.

One author was asked how she shows herself self-compassion. I thought it was an interesting question for an interview. The memoir author spoke first of acknowledging the difficulty in writing about painful experiences. Writing memoir, particularly writing about a traumatic experience, requires a very different mindset than writing a scene in a romantic-comedy, for example. The author spoke of giving herself breaks, and being very intentional when it came to planning her writing time. She knew she would need to strategically plan when and where she’d engage in this writing, and then give herself the space and time needed to rest afterward. 

In another interview, a different author was asked what she does to nurture her resilience.

The questions stumped me. Me, who is seemingly always writing or thinking about writing, was at a loss for words. 

Do I show myself self-compassion? Probably not nearly as much as I should. 

Do I nurture my resilience? Honestly, I’m not a hundred percent certain what that means or how that would look. 

But that’s what I’ve been thinking about. Those are questions that I can’t seem to let go.

Then over the weekend, as I tried to make my way through a full inbox, I read agent Kate McKean’s latest Substack post titled, “Compulsory Rest.” This sentence stood out to me: “The universe is going to do what it’s going to do—and all you can do is make sure you’re taking care of yourself the best you can.”

She’s completely right. I like to think I’m in control, with my lists and schedules and dinner meals planned out a week in advance. But really, the truth is, I’m not at all. There is actually little I can control, and when it comes to my own body, there’s really very little I have control over. 

It’s been hard. “It” meaning life, though I hesitate to put that in writing. Thankfully, my family is healthy and safe. We are not worried about having enough food in the fridge or a roof over our heads. We are lucky, fortunate, blessed in so many ways. 

And yet, life has been hard.

I feel like these interview questions and this Substack statement are like clues. Clues from multiple sources and multiple people. Clues I am paying attention to. 

But, also, clues I’m not  entirely sure what to do with or how to use them as a springboard for changes in my daily life.

Anyone else feel that way?

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. 

A Bit of Serendipity

Posted on by Wendy Kennar
I took this photo during last week's writing session.

Last week I spent time at one of my favorite not-at-home writing spaces; a cafe serving a yummy ice blended mocha, and providing many tables and chairs on a large patio with plenty of shade. 

This week, I wanted to share something that happened during last week’s visit.

Two women sat at a table close enough to me that I could overhear bits and pieces of their conversation without even trying. It felt serendipitous that of all the available tables, these two women sat near me. After all, I was sitting off to the side, near a wall, trying to distance myself from any loud chatter and distractions. 

Within a few minutes, I learned the two women were middle school science teachers. I heard them talking about sixth grade, about sedimentary rocks and fossils, about a project requiring a long roll of adding machine paper. (And I admit to feeling old when one of the teachers had no idea what adding machine paper even was.)

These two teachers spent their own time lesson planning. These were “off-the-clock” conversations. Because that’s what teachers who are passionate about teaching do. Your teacher brain is never really off, and teachers don’t actually get “the whole summer off,” as many non-teachers believe. Teachers are always working in some shape or form. It brought back memories of my own lesson planning days and the blended mochas my closest teacher friend and I used to enjoy while brainstorming and planning for our fourth graders. (I’m thinking of you, Nance!)

As if that wasn’t enough, after a bit of quiet individual work time, the two teachers began chatting again. I heard different phrases this time — it’s so lonely, I look fine on the outside, many people don’t get it.  

I learned that one of the teachers lives with an invisible illness. The other teacher’s partner lives with an invisible illness and was asking questions about how to best support a chronically ill loved one. 

I momentarily sat there in shock. 

What were the odds? 

Not only were these two women teachers, they were also among the target audience for my memoir! (My target audience includes those living with chronic illness, especially invisible illnesses, both physical and mental, as well as friends and families of those living with chronic illness.)

That day at that cafe, I had spent a portion of my writing time researching literary agents to query my memoir-in-essays. 

And then these two women entered the outer edges of the writing cocoon I create for myself at this cafe. 

I took it as a sign.

Disability Pride Month

Posted on by Wendy Kennar
Parasailing in Maui with my son, June 2022

July is Disability Pride Month. The designation coincides with the anniversary of the Americans with Disabilities Act (ADA) being signed into law, thirty-four years ago. 

In prior years, I’ve written about Disability Pride Month. (You can click here to read my post “There Is No Shame” from July 2021, and click here to read “Disability Pride Month Reading” from July 2022.)

This year, however, I’m having a really hard time putting into words how I feel about this month and how it impacts me. Partly because within the last couple of years, my physical abilities have decreased, and my dis-abilities — things I can no longer do or only do with extreme pain — have increased. 

I live with an autoimmune disease that most people have never heard of, that most healthcare providers don’t fully understand. A chronic illness that has no cure. And it is this part of my identity that is the catalyst for my currently-querying memoir-in-essays. 

One day, when you pick up my memoir in your local independent bookstore or public library or multi-floor Barnes and Noble and begin reading it, you will find that my disability identity is only a part of my story. I’m so much more than my body and how it can and cannot function. 

I am Wendy Kennar.

I am a white woman married to an African-American man. 

I am the mother of a mixed-race son.

I am a college graduate, the first in my family.

I am a ketchup-using tomato-disliker.

I am a morning apple juice drinker.

I am a night shower-er.

I am a handwritten list maker.

I am an envelope decorator. (Which means I am someone who still mails cards and letters the old fashioned way, with a stamp on the envelope.)

I am a save-the-avocado-for-last salad eater.

I am a chocolate ice cream only consumer (except if I’m eating a Vanilla Soft Serve ice cream at McDonald’s, which is the only thing I eat from McDonald’s.)

I am a daughter. A pen pal. A friend. A neighbor. 

I am a Los Angeles native.

I am generally a no-crust-for-me pizza-eater.

I am a woman who has never spent any time in the snow. 

I am a woman who owns more pairs of earrings than shoes. 

I am a curious person, who wonders about all sorts of things. (Why do you walk a red carpet at awards shows? Why red? Why not blue? Or purple?)

I am adventurous. (I have gone parasailing twice, ridden in a hot air balloon twice, and gone zip lining once.) 

I am a disabled woman. 

But that’s not all I am. 

There’s A Lot On My Mind

Posted on by Wendy Kennar

I have a bit of a confession to make, my friends.

This week’s blog post has been a hard one for me to write. And I think it’s because of the date. 

This week is an “anniversary” for me. It was during this week back in 2010, when I woke up unable to get out of bed. I couldn’t stand up. I couldn’t walk. My left calf was swollen like an about-to-burst water balloon and bright red, like my then-two-year-old son’s stuffed Elmo doll.

That day marked both an end and a beginning. I just didn’t know it at the time.

So I’m a bit emotional, and I have all sorts of things going through my head this week. Thoughts about where I am currently — in terms of my physical pain and limitations, but also in terms of my spirit and emotional well-being. 

It’s because I have all these thoughts swirling around, like a soft serve ice cream that mixes chocolate and vanilla into one delicious, twisty dessert, that I initially wasn’t sure what I wanted to write about this week. 

But I think this reflection is fitting for this week:

A few days ago I finished listening to Jessica Fein’s podcast, “I Don’t Know How You Do It.” Her guest was bestselling author Jean Meltzer, someone I happen to just love — for her books and her passion and her message. 

(In case you’ve missed them, you’ll find links to my earlier Jean Meltzer-related posts here.)

On this podcast, Jean explained the twists and turns her life has taken, the many ways she has had to completely reinvent herself. 

There were a couple of things Jean said that I haven’t been able to stop thinking about. Maybe they’ll be helpful to you, too:

–  One: Jean talked about the years she spent ignoring her illness. Her determination to continue on, pretending as if she wasn’t ill. Until she couldn’t. Until she became so ill, she was housebound. In all honesty, I have heard Jean speak of this before, but this time I really heard her. And it scared me. Because one of the things I’m actively working on is truly acknowledging my own illness and physical limitations. I often do try to push through and act stoically. What if I’m headed on the same path? What if you only get a certain number of “passes” to act as if you aren’t chronically ill, and then your body comes to a full and complete stop? (Which is actually what happened to me back in 2010. I wasn’t physically ill at that time, but I was going through an incredibly hard time emotionally. I kept trying to push through, until I literally couldn’t. That swollen left calf kept me hospitalized for four days, and my leg was never again the same.)

– Two: Jean also spoke of her decision to live a joyful life. If her body would no longer allow her to do all she wanted, if her body made it necessary for her to re-invent herself and give up her career, then she was going to do everything she could to seek out joy in this new life of hers. Lately, I have been more aware that I tend to spend some of my days as if the prime objective is to cross off as many items on my to-do list as I can. And while these are not necessarily unpleasant (water the plants, sweep the patio, do my physical therapy stretches), they’re not necessarily joyful either. I often give myself one task to do after the other, without giving myself the time and grace to simply sit and read, for example. 

So that’s my self-appointed homework: being more honest about what my body can and cannot do and to actively seek out and infuse my days with joy. 

Thank you, friends, for reading. I realize this week’s post was a bit longer. Thank you for being with me on this journey. 

P.T.

Posted on by Wendy Kennar
I call this my pedal machine. My physical therapist encouraged me to try it, since we usually start our sessions with me on an exercise bike. I started pedaling for 5 minutes each day, and have slowly increased my time. I'm now up to 10 minutes daily! Generally, I use the time to read.

I have lived with chronic illness and chronic pain for almost fourteen years. 

During this time, I have tried physical therapy. Many times. 

It never worked out for me. For instance:

–   One of my first attempts at physical therapy ended shortly after it started. The physical therapist told me he would no longer work with me, because, “There’s no point. Nothing we do can help you.”


–  Another therapist, in a different location, always made me feel as if I couldn’t do much, and what I could do wasn’t anywhere close to being enough. I left our sessions feeling worse than I started. Worse in terms of higher pain levels and worse in terms of self-confidence.

–  There was the physical therapy group with a close-to-my-home location. I quit that one, after having four appointments with three different therapists, each one giving me some contradictory information.

Based on my previous experiences, you can understand my hesitation when my rheumatologist didn’t just suggest physical therapy, he strongly encouraged it.

This time I’m pleased to say my physical-therapy-is-not-beneficial streak is now over. 

I finally am working with a physical therapist who speaks kindly and smiles. A physical therapist who celebrates my effort, who acknowledges just how hard some stretches are for me, who encourages me to try, who modifies as needed. 

Plus, during last week’s physical therapy session, my therapist did something no other therapist has done before — he made me laugh.

Now, most people know PT is shorthand for Physical Therapy. 

But there’s another meaning for that acronym. 

Let me give you a bit of context — my therapist had demonstrated a new stretch, something that would work my quadriceps. It hurt when I tried it, so we modified it, with me not stretching quite as hard or quite as much. 

That’s when my physical therapist told me one of his patients invented a different meaning for PT: Pleasant Torture.

It was so unexpected, I couldn’t help but laugh out loud.

I have never thought of PT like that before. 

While it’s not torture, physical therapy is hard work. Each time I leave, I am tired and worn out. The following day I’m usually sore. 

Yet even with all of that, overall, the process, this time, is pleasant.

Readers, do you have any physical therapy experiences you want to share? Have you been fortunate to work with someone who makes the process pleasant? I hope so!

Book Birthday: The Things We Don’t Say

Posted on by Wendy Kennar

The Things We Don’t Say: An Anthology of Chronic Illness Truths is celebrating its four-year book birthday this month.

This anthology is unlike any other book I have found — and I’m not just saying that because one of my personal essays is included in this collection. (My essay is called “Chronic Contradictions.”)

I’m saying that because it’s true. 

From the back of the book:

“Spanning different ages, ethnicities, genders, sexual orientations, and diagnoses, forty-two authors from around the world open up in fifty true stories about their chronic illnesses and their search for answers, poor treatment by doctors, strained relationships with loved ones, self-doubt, and more.” 

This is the book to turn to when you’re searching for connection. Because though the medical details may vary, many of the emotions and experiences written about are shared by many in the chronic illness world.

This is the book to turn to when you’re trying to help someone else learn a bit about what your chronic illness life is like. This is the book you hand to someone and say, “Here. Please read this story. This is what I mean. This is what it feels like for me. This is what I have been trying to explain to you.”

Readers, have you discovered any other chronic illness-related books that you find helpful and/or resonate with you? Please share! 



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.

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.