autoimmune disease

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.

March

Posted on by Wendy Kennar
(Me on my 17th Birthday. This year I'll be celebrating my 49th Birthday.)

I always focus my blog posts on one of the three big B’s in my life: Books, Boys, and Bodies. (Books – because I’m a reader and a writer. Boys – because I’m the mother of a son and a former elementary school teacher. Bodies – because I live with an invisible disability.) 

This week’s post is slightly different. Because I realized those big B’s in my life, those central ideas that are so important to who I am and what I do and how I go about my days, can actually all be represented with an M — the month of March.

You could almost summarize my life just by taking a look at our current month. 

Let me explain.

March is the month of birthdays — my mom’s and my son’s (on the same day!) and mine.

It’s the month of anniversaries — my parents’ wedding anniversary, the anniversary of my first date with my husband as well as the anniversary of my last day of teaching (both of these life-changing events happened on the same date, just 16 years apart!)

It’s the month of special days — including Read Across America and the First Day of Spring.

It’s the month of important days — International Women’s Day and César Chávez Day.

It’s the month of awareness — Women’s History Month and Autoimmune Disease Awareness Month.

Of course I know I am more than the sum of these days. The first day I became a mother, the last day I worked as a teacher. 

But it’s quite a coincidence to have all these days happen within one particular month. 

And each year, I find I am becoming increasingly reflective, more emotional, and more surprised by how these days touch me. 

Dear Readers, do any of you have a month that means to you what March means to me? If you’re comfortable sharing, I’d love to know.

5 Things I Still Haven’t Learned

Posted on by Wendy Kennar

A few things you should know:

1.  I became ill in July 2010.
2.  I received my diagnosis in November 2011. (This is considered relatively fast when it comes to autoimmune diseases.)

3.  Certain things don’t get easier the longer you live with a chronic illness. 

It’s the third statement that was the inspiration for my recently published “listicle” —  5 Things I Still Haven’t Learned That Are Amplified by My Chronic Illness.

To read the piece in its entirety, click here to be re-directed to Knee Brace Press.

Friends, do any of you relate? Would you add anything to the list? Let me know in the comments.

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.

An Update on My Memoir

Posted on by Wendy Kennar

I wanted to use this week’s blog post to give you all an update on my memoir.

I have been querying literary agents on-and-off since March. Some agents respond to your query with either a yes or no, while other agents will only respond if they are interested in reading more from you. I have received some form rejections as well as some very nice, encouraging rejections; however, no literary agent has said yes, or even a variation of yes — as in, I’d like to read more before making up my mind. 

Which means I now go to plan B — researching smaller publishing houses. These independent presses do not require an author to be represented by a literary agent and accept submissions from the writers themselves.

The bottom line is — I’m not giving up. I’m not stopping. I’m just changing course, because I truly believe in my book and I want to get my book into the hands of readers. 

You may remember my October post when I described my memoir and explained that it’s divided into three parts. (If you missed the post, click here to read it.)

The first piece in the first section is a Letter to the Reader. The letter explains why I eventually felt compelled to write my memoir. For several years I refused to write about my “medical condition.” Notice I used the word condition and not illness or disease. I didn’t think my autoimmune disease was important enough to write about. Surely other people dealt with more life-altering, more painful, more scary health issues. And while that’s definitely true, it doesn’t mean my experiences are any less important or any less book-worthy. 

So this week, I’d like to share a portion of my Letter to the Reader with you. You all are on this journey with me, and knowing you’re here, reading my work week after week, liking, commenting, sending me emails, supporting me is something I don’t take for granted. I appreciate you all. I hope you know that. 

From my Letter to the Reader:

“This book is deeply personal to me. It has lived in my head and my heart for years. I have created it with love and respect, for me — and for you. 
“I was thirty-four years old, a wife, a mother, a daughter, and a teacher, when I became ill. I didn’t comprehend what a rare, autoimmune disease diagnosis would mean. I didn’t realize my life would forever be changed.”

“The book you are reading is the book I wish had been available to me. It is the book I needed to read. 
“It is my hope that readers who don’t live with a chronic illness will finish this book with a different perspective, an adjusted way of looking at people. A bit more patience and understanding for others. A realization that you simply can’t know someone’s hurts just by looking at them.
“And for my readers who live with chronic illness and/or chronic pain and/or invisible disabilities, I sincerely hope that you read this book and feel a connection with my words. I hope, in these pages, you see a part of yourself, to the point where you can show an essay to a loved one and say, ‘Here, please read this. This is what I mean. This is how it feels.’ I hope, too, that reading this book brings you comfort in knowing you’re not alone. Many of us feel so desperately isolated with our medical struggles. It is an unbelievable comfort to find someone who ‘gets it.’ 
“I get it.”

Accessing Parenthood

Posted on by Wendy Kennar

In 2019, I wrote a personal essay titled, “Paying the Price,” and submitted it to the Pen 2 Paper writing contest, a “disability-focused creative writing contest.” That year, in addition to submitting in the Nonfiction category, I also submitted my essay to the Oleb Books Personal Essay category, meaning my essay, if chosen, would be included in an Oleb Books Anthology about parenting and disability. 

Five years later, I am so proud to share my essay, “Growing Up with Me and My Invisible Disability,” has been included in the recently published anthology, Accessing Parenthood: Stories By and About Parents with Disabilities.

During the last five years, my essay has been slightly edited and re-titled. (I admit — titles are not my strength. The editors politely informed me I needed a different title, one that would “add some pizazz that will pull readers in and make them curious enough to read on.”)

A few details are no longer accurate — namely the ages mentioned and the fact that our Los Angeles Clippers now play at Intuit Dome. 

But the emotions and the lessons learned haven’t changed.

Here are just a few passages from my personal essay:

“If I agreed, made the plans, and went horseback riding, would I be demonstrating the valuable life skills of perseverance and resiliency? Was my let’s-do-it attitude fortitude or stubbornness or stupidity? Was my go-getter-ness a refusal to submit to my disease or a life-affirming decision to go out and do things that might seem scary, hard, and uncomfortable?
“I didn’t know.
“I did know I wanted Ryan to grow up believing in himself and believing in the value of trying new things. Many things — food, music, places, experiences. Because they’re new and different. Because he’s curious. Because he wants to find out for himself. 
“I wanted Ryan to grow up living his life.”

“Through my actions and my words, I am trying to teach Ryan the broader definitions of strength, perseverance, and bravery. And along those lines, I’m trying to teach by example broader definitions for disability, pain, and handicap.”

“Maybe I hadn’t planned on being a mother with an inivisible disability, but it doesn’t change the way I love my son. Maybe I am teaching my son lessons I hadn’t expected to teach him. Maybe Ryan’s levels of patience, empathy, and sensitivity have grown exponentially while he’s growing up with me and my invisible disability.”

You can find out more about this unique collection by clicking here. 

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 Mind Is Full

Posted on by Wendy Kennar

I had a “difficult” doctor’s appointment last week. 

Actually, I’m not sure difficult is the right word. 

Let me set the stage:

This was my three-month check-in. Basically, because of the medications I take, I need blood drawn every few months. Though I had a 9:00 am appointment, with an 8:45 check-in, my rheumatologist was running late. 

The doctor asked some general questions, but I had come in with a list of concerns and some questions of my own. 

I told my doctor about my fatigue, about waking up feeling unrested regardless of what time I go to sleep and how many wake-ups I have each night. He told me to go to bed earlier and to keep the same sleep schedule seven days a week. I told him neither one was going to happen. (Why wake up at 6:00 am on a Sunday when we have nowhere we need to be at a specific time?)

I told my doctor about the pain. The pain that I carry around every single day. The pain that slows me down, weighs me down, and often makes me feel like I’ve got a wad of gum stuck to the bottom of my shoe, making it difficult for me to walk as effortlessly or as quickly as I would like. 

I also told my doctor about my physical therapy and the progress my physical therapist says I’m making. 

“He says my endurance has improved since we’ve been working together,” I told my rheumatologist. 

“I go for a daily walk, and I use my pedal machine twice a day now,” I said proudly.

“What are you doing while you’re pedaling?” he asked.

“I read, usually. But sometimes I listen to a podcast or watch something on YouTube,” I said.

“You need to stop multi-tasking,” he said. (You may remember my blog post from January, when I wrote about my doctor’s appointment then and Dr. P’s unhelpful suggestions.)

“You need to really focus in on your leg,” he continued. 

I looked at him. Bit my tongue behind my mask. 

He continued, speaking of the increased benefits I would experience if only I would do less, if only I would really “zero in” on my knee and my calf. 

“I think most families multi-task. I don’t know how to get through my day without multi-tasking,” I said.

I went on. “When I go for my walks, I’m not listening to anything. No AirPods in my ears. I’m just walking and staying focused on my surroundings. But at home, I feel safe in reading or listening or watching something while I pedal,” I said.

“You’re not getting the full benefits you could be getting when you do that,” he said.

“Actually, my physical therapist always talks with me when I’m on the treadmill. He said it helps to be distracted, it makes the time go by faster,” I said.

I tried again. “I am in some level of pain every day, all day. I don’t need to be any more focused in on the pain. In fact, I need a break from it. Reading a book gives me a temporary escape,” I explained.

Ultimately it didn’t matter what I said. Dr. P might be pleasant enough, asking about my family, wishing me a good holiday season. But the fact of the matter is he doesn’t get it. Because he’s not living with pain like I am. 

The appointment left me feeling dismissed and blamed. Like the reason I feel as lousy as I do is because I refuse to go to bed at 9:00 pm, or wake up at 6:00 am, or stop reading my novel while pedaling for nine minutes at a time. 

Even if I did those things, he and I both know my pain wouldn’t magically disappear. 

Daily pain is a fact of life for me. No need to concentrate on that sad fact any more than I already do.

To my chronic illness friends – have any of you had a similar experience? Are your doctors talking to you about multitasking and/or mindfulness? Feel free to share in the comments.

As a side note — the appointment made me think back to an essay I wrote several years ago titled, “This Is What ‘Mindfulness’ Looks Like To Me.” I encourage you to check it out. I’d love to know your thoughts about mindfulness.

 

About My Memoir-In-Essays

Posted on by Wendy Kennar
My Memoir-In-Essays is divided into three sections --
The Beginning, After the Very Beginning, and Not the End

This week, I’d like to share a bit about my memoir-in-essays. 

1.  I continue to query literary agents and have not yet had any requests for my manuscript. It’s hard, I admit, not to feel badly about this. At the same time, I know there are multiple ways to get my story out into the world. If it doesn’t work out with an agent, I’ll pursue one of those other possibilities (such as hybrid publishing or publishing with a smaller, independent press). 

2.  I am keeping the title private, for now. Just like when I was pregnant, we announced the gender of our baby, but kept his name private except for family and a few super close friends. So while I’ll tell you I have written a memoir-in-essays, I just don’t feel ready to share the title yet. Though I do realize I shouldn’t get too attached to my working title, because titles are often changed, for many reasons. (This has been the case for many of my personal essays which have been published over the years.) 

3.  Here’s my official pitch:  “… my story of becoming chronically ill, retiring from my teaching career, and living a life I hadn’t planned as a stay-at-home mom. The book is composed of personal essays and micro-essays written as short school assignments.”

One of the things that makes my manuscript unique is the inclusion of these “micro-essays written as short school assignments.” Teaching was a huge part of my life, my identity. And it is because of my chronic illness that I am no longer teaching. Therefore, there’s no way I could write my story about life with an invisible disability without including parts from my teaching life. 

When I taught fourth grade, my students and I completed a getting-to-know you questionnaire during the first week of a new school year. It was a short form that was a quick, fun way to share what made us each unique while also giving students the opportunity to learn about each other, and realize many of them shared common interests. 

I included this questionnaire in my manuscript, and this week I will share a bit of it with you, my readers. 

I Am A Person Who…

By: Mrs. Kennar

Directions: As a way to get to know each other, please fill out this worksheet. By writing honest responses, we will learn about our new classmates. In the process, I think we will come to realize that while we are each unique individuals, we have a lot in common. 

I Am A Person Who…

likes Nutella crepes

dislikes spinach

can recite the Preamble to the Constitution 

cannot throw a spiral

would never watch a horror movie

loves to read

How about you, dear readers? Feel free to leave a comment answering one (or more) of these prompts. 

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.