invisible disability

An Anniversary

Posted on by wkennar
Room 7, shortly before I turned in my keys. March 1, 2013

Yesterday, February 28th, was Rare Disease Day.

Today, March 1st, is the start of Autoimmune Disease Awareness Month. It is also an anniversary for me. Ten years ago, March 1st, 2013, was my last day of teaching.

It’s a day with a lot of emotions for me, and the way I try to make sense of my emotions is by writing about them. 

Many of you, my dear readers, may not know that I am writing a memoir-in-essays about my experiences living with an invisible disability. One of my first essays is titled, “The Big Reveal,” and recounts the morning when my husband and I met with my rheumatologist. 

“The appointment was set for early morning so I could make it to my fourth grade classroom before the school bell. I took this as a good sign. No doctor would deliver heartbreaking news and then expect me to go teach a roomful of nine and ten-year olds. Whatever he had to tell me couldn’t be that bad.
“That’s what I kept telling myself because that’s what I needed to believe.”

When my rheumatologist finally put a name to my symptoms — Undifferentiated Connective Tissue Disease (UCTD) — my husband and I felt it was the first time we could truly exhale. 

My rheumatologist said something else that morning, something that didn’t quite register at the time. 

“It’s rare. No one will know what you’re talking about if you say you have UCTD. So, if you want to walk around and call it ‘The Kennar,’ you can.
“I chuckled. ‘I’ve always dared to be different, so I guess this fits.’
“But since then, I’ve changed my mind. I don’t want a rare condition most people have never heard of. If I’m destined to live with a chronic medical condition, then I’d prefer it to be familiar; a disease doctors understand and know how to treat. Maybe even a disease with its own awareness month or magnetic ribbon I can attach to my car. I didn’t know it at the time, but different, at least when it comes to the world of medicine, isn’t always better.”

You might not see it on any calendar, but Strong Woman Day? 

That’s every day.

Sometimes I Cry

Posted on by wkennar
(The tears mean it’s essential to find moments of joy; like this family outing last month to the South Coast Botanic Garden.)

It surprises me, sometimes, the “little” things that make me cry.

Just the other day it was the discovery of a package of panty hose in the back of my dresser drawer. I’m not necessarily sad that I can no longer wear panty hose. (My calf is super sensitive; I can’t wear anything tight around it.) In fact, many women choose not to wear panty hose. But for me, it was more than the panty hose; it was what that panty hose represented — my teaching days. When I was teaching, I either wore slacks or skirts to school, except for field trips and School Spirit Fridays. I found that package of panty hose, and after my initial surprise wore off, I felt the tears running quietly down my face. 

A couple of weeks ago I heard Colbie Caillat’s “Bubbly” on the radio. It’s a fun, definitely-not-sad song. But, it’s also the song I remember describing to my husband as he stood next to my hospital bed. This was back in 2010, when I had been admitted into the hospital after spending hours in the Emergency Room with a swollen left calf and without the ability to stand or walk. My husband was trying to distract me with music, and I asked him about the song that had something to do with “toes and nose.” It was a challenge to find the song, but it was a task he could complete. Something we could have an answer to, in terms of the name of the song and the artist, when so much of our life as a family was without answers the longer I stayed in that hospital bed. So while it is a fun song, it has some powerful memories attached to it.

And sometimes it’s the not-so-little things. Like my nightly showers that seem to make me increasingly weak. Or the trips to the grocery store that most times feel more like an endurance test than a regular chore. Or emptying the dishwasher. Or watering my outside plants. Or getting in and out of the car.

Which is all to say that I have been living with this autoimmune disease of mine for almost 13 years. 

And it hasn’t gotten any easier.

It’s Not the Final Answer

Posted on by wkennar

“After a year and a half of talking with one doctor after another, it was Dr. W, a rheumatologist, who explained my mystery illness.

‘It’s an autoimmune disease called Undifferentiated Connective Tissue Disease. UCTD,’ he told us.

My husband and I had no idea what that meant except for one thing. My gut instinct told me that not knowing those letters, not immediately recognizing the name Undifferentiated Connective Tissue Disease, was a good thing. If UCTD was truly bad, it would have been a familiar term. A term you hear about a lot in relation to walk-a-thons and fundraisers. Multiple sclerosis. Muscular dystrophy. Even if I didn’t know the specifics of those illnesses, I knew their names. I knew they were complicated. UCTD sounded okay.”

The paragraphs above are from my personal essay, It’s Not the Final Answer. I’m pleased to share that my essay was selected for publication in Please See Me, Issue #12: Diagnosis. You can read the essay in its entirety by clicking here.

My Illness Does Not Define Me

Posted on by wkennar

“My illness does not define me.” 

I recently came across that statement in The Healing Journal: Guided Prompts and Inspiration for Life with Illness by Emily Suñez.

I’ve read that sentence before — in other books, in other posts. For some reason, though, when I read it this time, I really lingered on that page. I just couldn’t stop thinking of those words and what they mean. Maybe it’s because we’re in this in-between time of reflecting on a year that is rapidly coming to an end while daring to look ahead with hope to the new year. 

“My illness does not define me.” 

It’s true. I don’t think anyone who knows me well would use words like ill or disabled to describe me. And that’s probably because I spend an awful lot of energy trying to act like my illness is not front and center in my life. 

But, I don’t think that’s particularly helpful either. I try to ignore my autoimmune disease, push it aside and out of the way. But it’s still there, demanding attention, and though I don’t often admit it, it’s also demanding compassion.

I’ve never written that before. 

Probably because, in all honesty, that’s the part I’m just starting to become aware of. 

“My illness does not define me.” 

But it is a big part of me.

Tough, and Tired

Posted on by wkennar

“How long has your leg been hurting?” the technician asked me.

“Years,” I told her.

“No, seriously,” she said.

“Yes, seriously. My calf for over ten years. My thigh for a few years now. The last couple of years really bad,” I said.

The technician continued walking down the hallway and didn’t ask any other questions.

I didn’t know how else to answer her. I wasn’t getting an MRI because of an isolated incident, like a sports injury or something along those lines. I was getting an MRI because the pain in my left leg is no longer limited to my calf. The pain now extends to my left thigh. 

If you follow me on Instagram (@wendykennar), you may remember I posted a picture from an MRI a little more than a month ago. That MRI only looked at my left calf and knee. Apparently, my calf looked okay (whatever that means), but my knee is in bad shape. 

The scan hadn’t looked at my thigh, though the pain was there as well. At my follow-up appointment, my rheumatologist did some strength tests on my thigh. She pressed and squeezed. Everything hurt, and the left thigh is definitely not as strong as the right. This, apparently, was the evidence she needed to order the MRI of my femur.

It’s not easy living with a chronic illness; a chronic illness that causes chronic pain. And it’s really not easy to advocate for myself. But that’s what I had to do in the form of several emails before the appointment with my doctor. I had to keep asking for this second MRI; after, of course, I politely expressed my displeasure that the first MRI hadn’t included my entire left leg. 

My pain has intensified and spread. I told my doctor I was experiencing more difficulty in my daily tasks —getting in and out of the car, climbing the stairs at home, making dinner. I was struggling just to make it through the day. 

I am taking more medication than ever before and not feeling any better.

I’m not one to complain. In fact, I have often been described as tough and stoic. But really, I don’t know how much longer I can put on the brave face. I hurt. And it’s utterly exhausting to hurt this much and not feel like anyone is doing anything to help me feel better.

And now all I can do is wait. Wait to see if the MRI provides us with any answers about why the pain has worsened and spread. If so, this might mean a change in my treatment plan. Or, as tends to happen with me and medical tests, results come back in that “okay-enough” gray area. And then we’re left with trying to make guesses about where we go from here and what we try next.

Mochas, Candles, and Pain

Posted on by wkennar

What they saw?

A regular customer. The woman who always orders a small mocha — hot (if it’s cold outside) or blended (if it’s hot outside).

What they didn’t see?

Me, carefully holding my cafe mocha, slowly walking back to my car, thankful that my sunglasses covered my teary-eyes. 

Because I hurt. And because I was sad that I hurt this much. Again. 

I had woken up that morning after having a fitful night’s sleep, filled with strange dreams. 

I dreamed I was telling someone (not sure who, in my dream I didn’t actually see anyone else) that my husband and I met in high school (true) and were high school sweethearts (not true — we were classmates in the same English class junior year). I told this invisible person that my husband and I have been married twenty-three years (true).

I also dreamed that I was doing some physical therapy. I had to sit in some sort of chair and use my legs to push the chair back. But there was resistance, which made pushing the chair difficult. When I woke up, my legs felt like they had gone through a workout. And in the midst of all that, I saw a monster truck. (I told you — strange dreams.)

After taking my son to school, I went to Trader Joe’s. The benefit of going on a weekday, shortly after 8 am, is it’s a whole lot less crowded. Fewer people means shorter lines, but also less exposure to any germs (even though I continue to double mask when shopping). But the disadvantage of going to Trader Joe’s on a weekday, shortly after 8 am, is that I don’t have anyone to help me shop, or load the car, or bring the bags into the house, or put everything away.

Which means I was hurting and feeling kind of down and that’s when I decided to head to our neighborhood cafe and get a mocha to bring home while I wrote. 

The mocha didn’t lessen my pain. Neither did the scented candle I lit (Black Cherry Merlot from Bath and Body Works) or the flowers I had bought at Trader Joe’s. 

There’s really only so much I can do in terms of managing my pain. 

So in the absence of true relief, I try to pay attention to the “little things,” the things that bring me joy, or peace, or comfort. 

Readers, what “little things” bring you joy, peace, or comfort? 

Idiopathic

Posted on by wkennar

Add idiopathic to the list.

The list of words doctors and nurses have used to define me and my health.

Idiopathic is a new one.I give the doctor bonus points for using a synonym, and one that is much more professional-sounding than the other words I usually get:

Weird.  (You can read a blog post from 2019 titled “Stop Calling Me Weird.”)

Unusual.

Mysterious.

Atypical.

Strange. (Click here to read my blog post from 2020 titled “Weird? Strange? No. It’s My Reality”)

Unique.

At last week’s appointment, the doctor told me the new symptom we were concerned about, the reason behind the additional lab tests, could very well wind up being idiopathic.

We’ll see. We’re waiting for additional lab results. 

And therein lies one of the great dilemmas I live with — do I want “something” to show up on a test? Something that might shed some light on why my body is behaving the way it is. A surefire sign that would explain why something is happening within my body and how we best go about treating it. 

Or, would I rather be told the tests were inconclusive? Indeterminate? Ambiguous? Unresolved?

Because I’ve heard those words, too. That just means nothing of red-flag magnitude showed up on my tests, which rules out quite a bit. However, it does not provide my doctors and me with any information about where we go from here. 

And therein lies the big conundrum in my life with a chronic illness. 

(Another word a doctor has used in the past.)

Mr. Perfect on Paper

Posted on by wkennar

There aren’t many books written by an author who has earned a daytime Emmy, “and spent five years in rabbinical school before her chronic illness forced her to withdraw.” 

That author is Jean Meltzer.

(You might remember I raved about Ms. Meltzer’s first novel, The Matzah Ball, in a blog post from several months ago. Click here if you missed it.)

And as was the case in her first novel, Ms. Meltzer’s second book also features a main character who is a Jewish woman living with an invisible chronic illness. 

The book is Mr. Perfect on Paper. The character is Dara Rabinowtiz.  

Mr. Perfect on Paper was such an enjoyable read. Smart, funny, heartfelt. Plus, it gave readers a chance to learn about Jewish holidays in an easy-to-understand manner. Most of all, it gave us characters we cared about.

Here are a few of the passages I marked during my reading:

“He beamed as he entered, a bounce in his step, offering a hearty good morning to each person he passed. He was a champ at this. Faking it. Looking happy. Smiling through whatever pain was threatening to drown him.”

“There were days when Dara was so exhausted from her struggles that she could barely find the courage to get out of bed. It was then that her mother would show up, standing over her — and sometimes tearing off her covers — demanding that she fight. Fight, Dara. Her mother would repeat it like a mantra on her bad days. You’re allowed to be afraid, you’re allowed to be anxious, but you have to fight.” 

“There isn’t one way to be Jewish,” she said, finally. “Some people are very observant. Some people aren’t. Some people fall in the middle of the spectrum, or have different philosophies behind the reasons for their observance. Some people don’t do anything. When two Jews marry, they have to negotiate these religious choices. For example, will they keep a kosher home? Will they observe Shabbat? Will you cover your hair, or go to mikvah? Those are some of the big ones…”

“But,” Dara said thoughtfully, “you learn to live with it. The sadness never goes away. Maybe it never gets smaller, either. But after a time, you learn to hold both. You learn that joy still exists … there’s still laughter, and falling in love, and —“ she smiled, glancing down at the crumbs of her pizza “—there’s still jalapeño-and-pineapple pizza. You learn that good things still happen. You meet someone. You fall in love. Maybe you even get married. And when you walk down that aisle, you hold both. You hold the joy of the moment alongside your sadness for the one who can’t be there.” 

“But what I learned from this journey, from finding my real-life Mr. Perfect on Paper, is that love isn’t something that can be quantified on a list. Love is messy. And terrifying. It shows up when you least expect it, and complicates your life in every way. But it’s also … safe. And comforting. It allows you to be yourself completely, without judgment or fear, and it feels right. I don’t know how something so incredibly scary can also feel right, but I need to give this inkling in my heart —in my soul—a chance.”

“I know you think…because you have anxiety, that you’re not brave. But that’s not true. I’ve been thinking about it a lot, actually, and here’s what I want to tell you. Courage ins’t about jumping out of airplanes or building businesses from scratch. Real courage is showing up, even when you’re afraid. Real courage is putting yourself out there, even when you fail — especially when you fail. Courage is saying, this is who I am, standing up, allowing yourself to be vulnerable. And you are brave, Dara. You’re the bravest person I have ever met.”

Pain Awareness Month

Posted on by wkennar
(Just a few of my son’s cubes)

September is Pain Awareness Month.

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

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

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

Or at my son’s Cubing Competition. 

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

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

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

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

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

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

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

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

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

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

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

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

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

In my life, Every Month is Pain Awareness Month.

Books, Boys, and Bodies

Posted on by wkennar
The view from our balcony. I admit – I didn’t get a whole lot of writing done.

For this weekly blog of mine, I generally write about one of three B’s in my life:

–  Books (because a writer must also be a reader)

–  Boys (mainly my fourteen-year-old son)

–  Bodies (living with my autoimmune disease, an invisible disability).

Last week, it occurred to me just how much those three are often connected and inter-related.

Let me explain.

Last week at this time, my family and I were in Maui. 

This was a big trip for us. The last time my husband and I were in Maui was for our honeymoon, twenty-three years ago. Our son had never flown before, and I hadn’t flown since before my son was born. Which means I hadn’t flown since my UCTD (undifferentiated connective tissue disease) diagnosis. Add in my worries about COVID, and you can understand why I went into this trip with a great deal of anxiety. At the same time, I was determined to experience the trip as fully as I could. 

Which is where the B’s come into play.

In terms of books, I brought one book and one magazine with me. I didn’t read nearly as much as I thought I would. There were no days spent lounging by the pool. There was too much to see and do — including a visit to the Barnes and Noble in Maui.

When it comes to boys, my son was much more adventurous than my husband. During the planning stage of this trip, my son had told us he hoped we could go parasailing and ziplining in Maui. I had been parasailing once before, many years ago, on Catalina Island. That time, my husband was an observer, not a participant. And he opted for the same role this time around.

It was because of my son that I pushed my body as much as I did. 

Parasailing? Me? Yes, definitely. The parasailing itself didn’t cause additional pain in my leg. The only pain and discomfort came from getting in and out of the boat. But, it was a small price to pay for the incredible experience, as my son and I rode tandem and admired Maui’s beauty from such a unique perspective.

Ziplining? Me? Yes, I think so. Neither one of us had ever gone ziplining before. We signed up for an eight-line zipline adventure that promised to be something neither one of us would forget. I worried that I wouldn’t pass the knee and ankle check that takes place before we’re loaded into the van and driven into the hills. (On my waiver, I did disclose the information about my illness, and I did pass the knee and ankle check. The woman who observed me and gave me the final clearance reminded me to just go slow and hold your son’s hand to help you.) The actual ziplining wasn’t nearly as hard on my body as the hiking and walking from one spot to another. And I admit, I did slip and fall during one of our walks — thankfully, no injuries or scrapes. 

What an awe-inspiring experience we had. Views of the Pacific Ocean if we looked one way, views of the West Maui Mountains when we looked the other way. 

I felt strong, something I don’t always feel. 

Because on this same trip, I did something I had never done before. I used a wheelchair. A very good friend of mine had encouraged me to take advantage of the wheelchairs available at airports. Don’t waste your legs standing in line and walking through an airport, she said. And she was right. But it still didn’t make it any easier for me to ask for that accommodation. In fact, I waited for the day before our trip to submit the request.

We did a lot of walking during our trip. (Sand is so hard to walk on!) We did some hiking, too. There was so much to see (chickens and roosters in parking lots, waterfalls, flowers), so much to admire (sunsets, rainbows, puffy clouds), and so much to be grateful for (our trip, our safety, all that my body can still do).

And we each came home with one more book than we left with.