Chronic? Yes, Unfortunately.

“Chronic congestion.”

No, she wasn’t talking about the 405. 

The physical therapist was talking about my left calf. My calf is, was, the primary source of pain related to my autoimmune disease. For the last few months, the pain has traveled and now extends up into my thigh.

But apparently, what I refer to as a hard knot, or tightness, in my leg, my physical therapist calls “chronic congestion.”

She held my leg up, my foot pointing toward the ceiling as she rubbed and massaged and gave a basic summary of my case to another physical therapist. “She’s got chronic congestion all in here.”

It is chronic. I’ll give her that. My condition began in 2010 when I woke up with a swollen left calf, unable to stand or bear weight or walk for days. I was hospitalized and treated for cellulitis, a bacterial infection doctors believed was the cause of my swollen, red calf. 

But even after my calf regained its normal appearance, even after I could walk and drive and climb stairs, my legs were never the same.

About a year and a half after my hospitalization, I was diagnosed with a rare autoimmune disease called Undifferentiated Connective Tissue Disease (UCTD). It has overlapping symptoms of lupus, rheumatoid arthritis, and myositis without it being any of those diseases. It’s a medical hodgepodge in a sense, and a whole lot fancier way for doctors to say they don’t really know what’s wrong with my legs or what is causing it.

Whatever you call it, it means each day I experience varying levels of pain, fatigue, weakness in my legs with my left leg always worse.

So I completely agree with the chronic part of her statement.

But “congestion”?

I hear congestion, and I think of a stuffy nose. 

Or I think L.A. traffic and planning a visit to the Aquarium of the Pacific on a Sunday, a day the 405 is generally less congested.

It’s been weeks since the physical therapist used that term, and I can’t stop thinking about it – “chronic congestion.” 

It bothers me. 

Because, what can we do about chronic congestion?

City planners haven’t figured it out when it comes to southern California’s freeways.

And, as of right now, doctors and physical therapists haven’t figured it out when it comes to my legs.

 

Hoping For Courage

What is going on inside these legs?

Without going into details, I have a medical test/procedure scheduled later this week. 

Here’s what you should know:

I’m living with my autoimmune disease for almost 10 years now. In that time, I’ve already experienced this particular test twice. Each time the results were inconclusive. 

The test is being done a third time mainly for comparison purposes. It’s been a few years since the last test, and doctors are interested in seeing if any changes show up this time around. There are some concerns that my left leg may be worsening. If so, this test may give some clues about what’s going on in my leg.

Aside from the fact that I don’t want to have this test in the first place, I’m not sure what to think about this test and its possible results.

Here’s the dilemma:

Do I want the test to reveal something? To pinpoint a reason why my leg pain is increasing and my leg strength is decreasing? Would this perhaps give doctors a lead, a clue, in terms of more effective treatment? 

But what if my leg does test worse? What would that mean? 

Or, do I want this test to be like every other test I take – indeterminate? Within the boundaries of normal-enough? 

Which is reassuring I guess, but on the other hand it also means it provides doctors (and me) no answers, no explanations, no reasons why I feel the way I feel.

In reality the only thing I can realistically hope for is courage. Courage during the test. And courage after the test. In whatever form I may need it.

 

A Promise To Myself

Today is generally the day when many people state their new year’s resolutions. Grand plans for dreams, goals, and aspirations.

I’m not going to do that.

Instead, I’m going to state my intention to continue working on my memoir. I’m going to promise myself that I will not give up on sharing my story. 

For my fellow writers out there, I highly recommend Writing Hard Stories: Celebrated Memoirists Who Shaped Art From Trauma by Melanie Brooks. This collection is such an inspiration, providing insight into how different writers took something hard/terrible/horrific and used it to create something beautiful/meaningful/relevant.

Here are a few passages I’d like to share with you:

“The reason I write memoir is to be able to see the experience itself in a new way. I hardly know what I think until I write. The therapy is one way of sort of processing things. But it’s only in writing about some of these things that we discover and understand the metaphors of our experience that give our life meaning. Writing is a way to organize your life, give it a frame, give it a structure, so that you can really see what it was that happened.” – Sue William Silverman

“I was a writer, and then this big thing happened in my family. And the way that I tend to try to understand things is through stories – both things that I write and things that I read. That’s the deepest way I know of expressing something inexpressible.” – Joan Wickersham

“You take what you’ve been through, and if you are a writer, you have to write about it.” – Suszanne Strempek Shea

“It really becomes memoir, though, when you open up space for others to enter – when it becomes about more than you, or your family, or your own personal feelings.” – Edwidge Danticat

“Don’t forget, it’s scarier not to do it than to do it.” – Abigail Thomas

 

My Son Is An Only Child

Our Beautiful Family

It happened again.

A couple of weeks ago, while at the checkout line, the friendly Ralphs cashier told me I needed to have at least one more child.

She said this in front of my son.

This time around, the cashier is someone we chat with each time we see her.  She is warm and friendly with my son.  She comments on how tall he’s gotten and asks how he’s doing in school.  

But this was crossing the line.

While she scanned my groceries and I bagged them, I tried my usual answer.  “We’re blessed with Ryan.”

But she didn’t let it go.  “You need to give him a brother or a sister.  You never know what could happen to you or your husband.  You don’t want to leave him alone.”

I felt a physical reaction, as if I had been punched in the stomach.  I know this.  It is one of my great fears.

As we loaded our groceries into the car, I spoke to my son about this conversation.  “I really like it when we see Dora, but I really didn’t like what she said to us today,” I told Ryan.

I continued.  “You know each family makes their own decisions about children.  How many to have, or if they’ll have any at all.  And each family’s decision is right for them.  Our decision is right for us.  Daddy and I feel so lucky that our family is the way it is.”

“I know,” Ryan said.

But like I began this post, this isn’t the first time a supermarket cashier has commented on our one-child family status.  And even though I’ve dealt with this before, it doesn’t get any easier.

Click here to be re-directed to RoleReboot.org  to read my personal essay, “When A Stranger Told Me I Needed To Have a Second Child.

 

Mommy Has a ‘Boo-Boo Leg’

My curious son and I, on the observation area of the Santa Barbara Courthouse. June 2018 (I climbed all the stairs!)

“What does the doctor do with all the blood after they check it?”

My son once asked me that question.  It took me by surprise and caught me off guard, because it was something I had never considered.  

It’s not the only good question Ryan has asked me over the years.  There have been so many I wrote a personal essay about them.  And I’m proud to say that “Mommy Has a ‘Boo-Boo Leg’: Talking to My Son About My Autoimmune Disease” is now a non-fiction finalist in the Pen 2 Paper Disability-Focused Creative Writing Contest.

Click here to read my essay, and this year, readers may vote for their “audience favorite.” (You must have a free Submittable account to vote).  

Thank you in advance for reading and spreading the word!

 

Weird Wendy

I am Wendy.  Woman, wife, writer.

I am, in fact, a woman of many “W’s.”

Depending on who you ask and how they feel about me, I may be described (to varying degrees) as watchful, wise, wacky, warmhearted, witty, wonderful.

Ask my rheumatologist, though, and he’ll tell you I’m weird.

To get the full story, click here to read my personal essay, “The Hard Realities I’ve Faced After My Doctor Told Me, ‘You’re Just Weird’,” which was recently published at The Mighty.

 

 

Playing in Pain

The other afternoon, my son and I played hopscotch.

That was after we had played handball.

There are a few details that make those statements more meaningful than they may initially appear.

First off, in our neighborhood, we don’t see many parents outside playing with their kids.  Where we live, kids are left to wander on their own.  Most of the families near us are not only-child families like ours so often times siblings play together, or neighboring kids play together.  But the other day, we were the only ones outside enjoying the sunshine so I was my son’s playmate.

Secondly, neither hopscotch or handball are easy sports for me to play.  Me, the woman with an autoimmune disease, the woman who qualifies for a disabled placard, the woman who experiences pain in her legs (primarily the left leg).

But my son wanted to play.  And I wanted to play with him.  So I did, until I just couldn’t.  Until I was balancing on one foot, bending down to pick up the rock from the hopscotch square, and pain began to shoot up and down my leg a bit.  Then I had to sit the rest of the game out, and cheer on my son while he played alone.

That part hasn’t gotten any easier for me — knowing when to stop and knowing when to say “I can’t do this any more.”  Because I do want to play with my son, and because I realize how special it is that my ten-year-old still wants to play with me. 

Our afternoon playtime session got me thinking about a personal essay I wrote a few years back that was published at muthamagazine.com.  Click here to read, “The ‘A’ Word: Parenting with an Invisible Disability.”

 

Looking Beneath the Surface

When you first look at the picture above, all you see is a lush, green hanging plant.  But if you looked inside, if you looked down at the soil that is hidden by the leaves, you’d find more than a plant.  You’d find a bird sitting on her nest.  And in that nest, if the bird flew away, you might get lucky to spot the baby birds in there.

A week or so ago, we discovered the nest when I was watering our plants.  I accidentally startled the mama bird, and after she flew away, I saw four small eggs tucked into the nest.

Those eggs have hatched, and now this plant on our back patio is home to a bird family.

Yet when you first walk by, all you see is this plant.  “Our” bird family is hidden.  Just like my autoimmune disease.

It’s funny how the mind works, but discovering this nest, listening to “Tweet Tweet” (my son’s name for the mama bird), has got me thinking about a piece I wrote for MUTHA Magazine. Click here to read my personal essay, “Can Acknowledging My Weakness Actually Be a Sign of Strength?”

Who Is Wendy Kennar?

My ten-year-old son enjoys reading the “Who? What? Where?” Series.  If you’re not familiar with these non-fiction books, they are biographies of famous people (both historical and contemporary figures) as well as books about well-known places and significant events.

On the back cover of each book, is a series of questions related to the book’s subject.  This week, I thought I’d borrow that format to share a few things about me:

Who Is Wendy Kennar?

— A little girl who always liked to wear plastic jewelry around the house and pretend she was a movie star.

— A college student who didn’t have a car for half her college years and relied on six buses a day to commute to and from California State University Northridge.

— A mother with an invisible disability.

** All of the above

It’s all true.  And you can click here to read my personal essay “Parenting With an Invisible Disability” at MomsLA.com.