undifferentiated connective tissue disease

Saving My Tears

Posted on by wkennar

The other morning, as I drove home, I heard the song “Save Your Tears” by The Weeknd on the radio. I had taken myself to my favorite neighborhood cafe for some outdoor reading and writing time. 

“Save Your Tears” is a song I’ve heard a fair amount of times. Usually it’s a song I listen to, a song I enjoy. But this time, it actually brought me to tears. 

I parked the car and sat inside for a bit. I didn’t want to run the risk of seeing any of my neighbors, I didn’t want to have to try and explain why I was crying, because I wasn’t quite sure. 

I don’t think it was any one thing.

Actually, there were a number of reasons I could have been crying. 

For over two weeks now, I’ve been dealing with a pinched nerve, which at its worst led to tingling down my arm, into my right hand and fingers. It has created pain and tightness in my neck/shoulder area. It has made everyday things like brushing my teeth and washing my face harder to do. But that wasn’t why I was crying.

Since my son’s high school hosted Open House, about a month ago, I have had extreme pain in both my knees. It’s difficult to bend and pick up something that I dropped. It’s too painful to squat and pull weeds out of my garden. So I plop down onto the sidewalk and weed my garden and then have to figure out a way to get back up. But that wasn’t why I was crying either.

I think it was the lyrics, the simple repetition of “Save your tears for another day.” 

Because I do that, all the time. I save my tears for another day or another part of the day. I stop myself from crying in the Ralphs parking lot, as I load our bags of groceries into the car. I don’t cry as I unlock our front door, but wait until I get inside where no one can see me or hear me. 

And that is the bottom line — where no one can see me or hear me. Because it’s been my experience that me crying — out of pain, or fear, or frustration, or weariness — makes those around me uncomfortable. Which means on top of me trying to take care of myself and let the tears out, I’m left trying to soothe and reassure my family while downplaying my tears and whatever it was that caused me to cry in the first place.

Except. 

Except the other day during my virtual therapy session. I cried. I cried multiple-Kleenex, nose-running, red-blotchy-eyes kind of crying. Because I generally keep everything in. I am so good at biting my tongue. At keeping my stoic game face on. At not letting on how hurt I really am. How much pain I really feel. And how much help I need.

I wouldn’t say I felt “better” after my crying session. But I definitely didn’t feel worse, either.

The Healing Journal

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I recently finished working my way through Emily Suñez’s beautiful book The Healing Journal: Guided Prompts and Inspiration for Life with Illness.

If you read my blog on a regular basis, you might remember that twice before my blog posts were inspired by prompts in this lovely book. (You can read “I Am Alive With Creativity” by clicking here, and “My Illness Does Not Define Me” by clicking here.)

I finished reading the book and answering the writing prompts, but I haven’t finished healing. And that’s part of what makes life with a chronic illness so complicated. You never really completely heal from a chronic illness. 

There is no finish line. No specific treatment plan in place, that once you work through all the steps you’re “better.” It doesn’t work that way for me. It doesn’t work that way for a lot of people. There is no ideal world of “fully healed” to strive for. 

What I have found in the more than-a-decade that I have lived with my autoimmune disease, is that healing is a continuous process. Just as my symptoms go through periods of flares and remission, my feelings about my invisible disability ebb and flow as well.

My illness, and my healing, will forever be a part of me.

One Step At a Time, One Book At a Time

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This past weekend, I attended the Los Angeles Times Festival of Books. For those who aren’t familiar with it, the Festival of Books is a huge, two-day, annual event held on the campus of USC (University of Southern California). 

Years ago, before my son was born, I went to the Festival every year. Back then it was held on the campus of UCLA (University of California Los Angeles.) 

I attended the Festival last year for the first time in many years. There was a certain thrill and energy that came with being surrounded by all things book-related, at attending an event that is a true celebration of books and authors. 

This year, though, I really wasn’t sure if I should go or not. Because I haven’t been feeling well lately. Because my pain level has been high and my energy level has been low. 

That’s the hard part for me — deciding when to push myself and when to hold back and admit that my body needs rest.

The truth was, I really wanted to go. I didn’t want to stay home because I was worried about my pain or the heat. I wanted to prove that I’m still capable of being out in the world, doing things I feel passionately about, not letting my illness completely dictate my life. 

I tried to make it as easy and stress-free as possible for myself by not attending any panel discussions or book signings. I didn’t want to have to worry about being in a particular place at a particular time. 

I simply strolled around the Festival, wearing my mask and sunhat, and doing my best to be present and enjoy the experience.  

I admit — I did start to daydream about what it would be like to be an author with my own exhibition area, selling copies of my memoir. Immediately I thought of giving out small, wrapped candies to those who stopped at my table. (Starburst and Hershey’s Kisses came to mind, though the Kisses might melt in the heat. Jolly Ranchers could be another possibility.)

I walked around, I took pictures, I picked up books, chatted with some authors, and bought three books, even though I have more than a dozen books at home, just waiting for me to read them. 

I loved being there. But, (you knew there was a but coming) it was incredibly hard on my body. It took me about 15 minutes to walk from the parking structure to the exhibition area. Plus, I had parked on level 5 which meant I would ordinarily take the elevator down to the ground level. However, eager attendees were crowding onto the elevator each time it stopped at 5, and I will not ride in a super-crowded elevator. (During my teaching years, I once was stuck in the school elevator for 55 minutes one morning.) So I walked down five flights of stairs. (Thankfully when it was time for me to leave, no one else was waiting for the elevator so I rode it up to parking level 5.)

When I felt my speed decreasing, when I found myself searching for a place to sit and rest in the shade, I knew it was time to go. That’s when the mask comes in handy. No one can see me talking to myself as I retraced my steps back to the parking area. One step at a time. Okay, you can do this. 

Am I glad I went? Yes. 

But I’m also sad. Because I miss the old days, the years I could just go out and do something without weighing all the possible risks. When I didn’t have to worry about having a pain-hangover the day (or days) after a particularly strenuous activity. 

No Rest for the Weary

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I stood in my hallway the other afternoon, leaning against the wall, doing my physical therapy homework.

And I started crying. 

Not because of pain. Not because the stretch was overly difficult. 

I started crying because sometimes I’m just so tired of it all.

I’m tired of the bottles of prescription medication and supplements.

I’m tired of the doctors’ appointments written on our family calendar hanging in the kitchen.

I’m tired of watching a basketball game on television with a heating pad on my left leg.

I’m tired of waking up each morning and having my first footsteps feel and sound more like shuffles — heavy and slow and laborious.

I’m tired of lifting up my pant leg, trying to see if my leg looks different. Or swollen. Or bruised. 

It all feels like so much work. 

Living with a chronic disability is — a lot. Life-changing. Expensive. Anxiety-provoking. Wearing. Uncertain. Scary. 

My son is on his spring break this week. A week off from early morning alarms, five-minute passing periods, morning announcements, dismissal bells, crowded hallways, and nightly homework. 

But when you live with a chronic disability there is never time off.

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

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(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

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“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

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“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

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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?