undifferentiated connective tissue disease

Something to Endure

Posted on by Wendy Kennar
My memoir is divided into three parts.
The final essay in this part, and the book, is
"Something to Endure."

Super exciting news:  my manuscript is complete, and I will now be entering a new stage of the writing process — the querying-agents phase. 

But before I got here, when I was revising and rewriting my manuscript, I had to make a decision regarding my final essay. I had three essays that my book coach and I agreed were all possible candidates for that all-important last essay in the book.

It is my hope that my memoir will be read by those living with chronic illnesses, as well as those who know people who are living with chronic illness. I’m hoping that my story can serve as an example. Though the medical specifics may vary, the emotions may be quite similar. So someone who lives with diabetes, for example, could give my book to a loved one, point to one of my essays, and say, “Here. Read this. This is what I feel like sometimes.” 

For far too long, terms such as “disability” and “disabled” have been too narrowly defined. I really want my memoir to broaden those definitions, and I would like my story to serve as just one example of what a disabled life looks like.

When I started working with my book coach, I told her I was writing the book I needed to read when I became ill. I hope after reading my memoir that my chronically ill readers feel less alone and more understood. Along those lines, I want my final essay to give readers a sense of comfort, a dose of good-feels. 

Before making my final decision, I stopped to reflect and think about how I want my readers to feel when they’re done reading my memoir-in-essays. 

These were the adjectives that I came up with:

Hopeful.

Enlightened.

Inspired.

Comforted. 

With that in mind, I made my decision (and my book coach agrees). My final essay is titled “Something to Endure.” Because basically that is the bottom line when it comes to chronic illness. You have to endure the illness. You need to stick it out and figure out ways to handle it, to be with it day-in and day-out for the long haul.

But you don’t have to do it alone. Books, including my own, connect us.

Unhelpful Advice

Posted on by Wendy Kennar
(This photo was taken a couple of months ago. Different doctor. Dreadful pain chart.)

I had a hard doctor’s appointment last week. 

Maybe “hard” isn’t the right word. After all, I found parking half-a-block away from the building. The doctor was only running a few minutes behind schedule. And because I had blood work done in December, no additional labs were needed. 

In those terms, it was a pretty good appointment. 

But it was still a hard appointment. Because I left the appointment feeling weary, disappointed, and dejected. Angry, frustrated, and pissed. Sad, crushed, and dejected.

Later, I told my husband, “No one knows what to do with me.”

My rheumatologist (rheumatologist number three in my life with chronic illness) cannot explain my increased levels of pain and decreased levels of energy. Because the blood work shows my inflammation is under control. Which means my medication is working. But it doesn’t explain why I feel like “I’m going downhill, fast, and no one is able to slow me down.” (I said that same sentence to my doctor. He nodded his head. He said he understood.)

I should point out that I do like this doctor. I like that he looks at me when I speak and really seems to be paying attention to what I have to say. I like that, during past appointments, he seems thoughtful when suggesting new medications to try and shares with me his reasoning behind those medications. (By the way, I have tried every medication he has suggested. A few made me worse than I was to begin with.)

My doctor said he’s concerned about “structural damage” to my body. Which sounded more like a description of a car than a person. My doctor voiced his concern about feelings of depression I may have. I reminded him I regularly speak with my therapist.

He wants me to try physical therapy. Again. (Readers, I have tried physical therapy multiple times over the years. At different locations. Usually I’m told how inflexible I am. How much less range of motion I have in my left leg compared to my right leg.) I have the phone number; I just need to call and make the appointment. I’m procrastinating. 

But that wasn’t his only recommendation. 

“Do you multi-task?” he asked.

“I’m a mom. Of course I do. Don’t all moms?” I asked.

He didn’t seem amused by my response. Though I wasn’t trying to be amusing. 

My doctor says multi-tasking leads to additional stress. 

So do less, and eat more whole grains (another one of his suggestions).  

But I can tell you right now that won’t help my pain. 

The truth is — there is no easy fix. I know that. He knows that. 

At the same time, no chronic illness patient wants to be sent on their way having been told to multi-task less.

Invisible Forces at Work

Posted on by Wendy Kennar

“It’s the invisible nature of the coronavirus that complicates matters. So many people don’t fear something they can’t see. However, I know how powerful and life-changing invisible forces can be. My autoimmune disease, Undifferentiated Connective Tissue Disease (UCTD), is an invisible disability, causing pain, fatigue, and weakness in my left leg. My rheumatologist described it as sharing overlapping symptoms of lupus, rheumatoid arthritis, and myositis. UCTD is a chronic illness causing chronic pain. 
“A quick glance, and I look ‘fine.’ No assistive walking device needed on a daily basis. No one can see inflammation by looking at me, especially since my legs are always covered by loose-fitting pants or long flowing skirts. No one can see the pain, the crushing sensation I experience in my leg as if my son has placed his heavy backpack on my lap. No one can see the tightness of my calf, as if it is stuck in a perpetual charley horse. However, just because you can’t see my disability, doesn’t make it any less real.”

The paragraphs above are an excerpt taken from my personal essay, “Invisible Forces at Work,” which, I’m pleased to say, has recently been published in an anthology titled The Covid Logs. “The Covid Logs provide a space for the disabled and chronically ill communities to share their experiences of navigating the Covid-19 pandemic.” The anthology is available as a PDF and a full-color zine and includes personal essays, visual art, and poetry. You can click here to learn more about this special collection.  

Chronically Fabulous

Posted on by Wendy Kennar

Chronically Fabulous is the name of author Jean Meltzer’s new podcast. It’s an interesting combination of words. (And if you’re not familiar with Jean Meltzer’s books, be sure to check out my posts about her first novel The Matzah Ball, her second novel Mr. Perfect on Paper, and her third novel Kissing Kosher. They all feature main characters who are Jewish women living with chronic illnesses and chronic pain.)

The podcast aims to be a safe space for listeners, and function like a conversation with your chronically ill friends. 

While I acknowledge my chronic illness, I don’t think it’s fabulous in any way. Actually I don’t even use the word “fabulous” all that much.

But, put together – Chronically Fabulous. I kind of like the idea. 

2023 was one of my toughest health years in terms of intense pain. It was the year of admitting it’s too hard to grocery shop by myself. The year we rented a wheelchair for our family summer trip to Washington, D.C. The year I bought a wheelchair to have for those special occasions when I’ll need it (such as attending a performance at the Hollywood Bowl). 

And while those were all super tough things, they’re also things I’m proud of. I didn’t cancel our summer trip after I began researching museums and monuments in D.C., knowing I wouldn’t be strong enough to walk them all. I found a way for our family to take the trip and that, I think, is an example of being chronically fabulous.

So far, Ms. Meltzer has released one episode of her podcast, and the part that most stood out to me was the discussion regarding “pacing.” No doctor has ever spoken to me about pacing — the idea that certain activities are more energy-intensive, so a person living with chronic pain has to figure out rest days (usually before and after the event). Pacing is a tool; a tool I haven’t regularly used. But it’s time. Because I simply can’t keep up anymore. Listening to the podcast, I realized I don’t do what Ms. Meltzer spoke of — creating boundaries and making myself, my health the priority. She wants listeners to “live your best, most valuable life.” 

And I want that too. 

Something I came to acknowledge this past year was my tendency to do everything possible to fight my pain; trying to pretend like there’s nothing wrong. Trying to act as if I can keep up with my same-age-as-me husband and high-school-age son. I have kept up the act for years, because I didn’t want to miss out on any shared family experiences. Because I didn’t want my illness to hold me back, or take any more from me than it already had, most heart-breaking of all being my teaching career. 

But 2023 was the year I saw I just can’t keep doing it. Something shifted. I am not waiting for some cure or major fix. It’s not coming. Instead, I’m searching for small, but mighty, tweaks. “Little” things that make a big difference in how I get through my days. And something I need to consciously work on is pacing. Learning to give myself permission to sit and read. Not pushing myself to plan big outings both weekend days. Trying to build in rest times the day before and the day after a big event. Trying to treat myself with the same compassion and kindness I so easily share with those I love.

Chronic Illness at Midlife

Posted on by Wendy Kennar

“I’m in my forties, yet when I climb the stairs to our bedroom each night my knees creak as if I’m walking on the hardwood floors in my parents’ nearly-hundred-year-old house. I have a disabled parking placard in the car, something my dad didn’t qualify for until he was seventy-five. Acquaintances may tell me I look fine, but I don’t feel fine. I feel worn-out and weary.

“It’s hard to know which parts of my life are impacted by natural aging and which parts have been impacted by my autoimmune disease. Is my lack of energy and lack of flexibility a result of my body simply not being twenty-one anymore? Or have all these changes somehow been sped up, as if I’m rolling along downhill, the brakes have gone out, and not only can’t I stop, I can’t even slow it down?

“I don’t know. I’ll never know. Because there’s no way to separate the naturally-aging me from the chronic patient me.”

I’m pleased to share that the paragraphs above are an excerpt from my recently published essay “Prime Time or Off-Peak? LIfe with Chronic Illness at Midlife.” You can click here to be re-directed to Midstory Magazine to read the essay in its entirety.

(By the way, long-time readers may recognize this essay. It had been published on a different site quite some time ago. That site is no longer active, which is why I chose to lightly edit and re-submit the essay.)

Hiding My Realness

Posted on by Wendy Kennar
This photo was taken a few years ago in Cambria, CA.

Last week I highlighted some of my favorite passages from part one of Michelle Obama’s The Light We Carry.

This week, it’s one sentence I want to highlight. One sentence I cannot stop thinking about.

“We only hurt ourselves when we hide our realness away.”

In many areas of my life, I am unapologetically real. I don’t color my hair. I allow my definitely-non-brown strands to commingle with my very-brown strands.

I don’t wear make-up. What you see is what you get.

If my purse ever matches my shoes, it was purely coincidental. I don’t have enough purses, or shoes for that matter, to make that particular accessory match happen on a regular basis.

I do, however, change my necklace and earrings each day, and do my best to match those with the top I’m wearing. 

I realize most people don’t wear nine rings on eight fingers. But I do. And I’m okay with not being like everyone else.

Aside from all that; however, I do hide my realness away. 

Often. 

And, if you’re chronically ill, a.k.a a “spoonie,” you probably do, too.

(If you missed it, you can click here to read my blog, “Trying to Figure Out This Spoonie Life.”)

Because when you’re chronically ill and experiencing chronic pain, you have learned to put on, what I call, your “game-face.” Living with a chronic illness is sometimes like being in a high-stakes poker game that doesn’t end. You can’t let on how bad the pain is. For a number of reasons you mask your pain so you look “fine.”

Sometimes I do that because I don’t want any more suggestions about medicinal cannabis or green smoothies or compression socks. 

Sometimes I wear my game face because it’s just easier. Showing my pain often makes those around me uncomfortable. And if I’m already feeling bad, I don’t need to add to the situation by making those around me feel bad, too. 

There are more reasons. But I’ll stop there, because it brings me back to Mrs. Obama’s statement:  “We only hurt ourselves when we hide our realness away.”

That’s the part I haven’t completely figured out. I’m certainly not trying to hurt myself. Yet I am very much trying to protect my near and dear ones. 

The work on myself continues.

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.

I Bought Something

Posted on by Wendy Kennar

This picture was taken at the National Museum of American History during our summer trip to Washington, D.C .

I have some news to share.

But first, for readers who may not know, a little background.

When I first became ill in 2010, and diagnosed late in 2011, I was determined my autoimmune disease wouldn’t greatly impact my life. 

I didn’t know it then, but that really wasn’t my decision to make. My body was doing its own thing, which is how autoimmune diseases work. Your body attacks itself.

I retired from my twelve-year teaching career in 2013. It was a heartbreaking decision to make, but at the same time, I really didn’t feel I had a choice. My body was breaking down, and I was finding it harder and harder to keep my head above water between teaching elementary school, parenting my young son (he was two when I became ill), and trying to maintain my other roles as wife, daughter, and friend. 

Since that time, there have been ups and downs, or medically speaking, flares and periods of remission. 

But now I’m in a new place. My leg is weaker than it has ever been. Daily intense pain, though my body currently shows no signs of active inflammation.  

Which brings me to my news. 

I ordered a wheelchair. 

You may remember my blog post about my decision to rent a wheelchair for our summer trip to Washington, D.C. (If you missed it, you can read it here.)

Since then there have been other times when a wheelchair would have helped. Seeing Return of the Jedi in concert at the Hollywood Bowl. Taking a family walk. And there are other outings I have avoided, such as visiting The Huntington, simply because I didn’t think my legs were strong enough.

But, I’m scared. 

I don’t know if I am just stuck in a really long, really bad flare that will eventually ease up. I don’t know if better days are ahead once I can get past this rough patch.

Or, is this just the beginning? Am I headed to a reality that finds me increasingly dependent on a wheelchair and needing someone to push it, to push me.

No one knows. 

I’m trying not to let the purchase of a wheelchair make me sad. I’m trying to remind myself how helpful it was in D.C. How having a wheelchair allowed our family to see and do as much as we did. 

I’m trying to think of the wheelchair the same way Michelle Obama wrote about her dad’s cane in her book The Light We Carry: Overcoming in Uncertain Times.

“As we saw it in my family, that cane symbolized nothing. It was just a tool, the same way my mother’s spatula was a tool in the kitchen, or my grandfather’s hammer got used any time he came over to fix a broken shelf or curtain rod. It was utilitarian, protective, something to lean on when needed.” 

I’m trying. But it’s not easy.

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.

Trying to Figure Out This Spoonie Life

Posted on by Wendy Kennar

Lately, I have been thinking a lot about the term “spoonie.” 

The term “spoonie” comes from the Spoon Theory, both of which are familiar terms if you’re a member of the chronic illness community. Basically, the Spoon Theory is an analogy used to describe the amount of physical and mental energy a person has available each day. The theory was developed by Christine Miserandino. While out to lunch with a friend, Ms. Miserandino used the spoons on the table to explain to her friend what it’s like to live with a chronic illness, in her case lupus. Each spoon represents a finite amount of energy. Each day you may wake up with a different amount of spoons, yet there are still certain tasks that are expected to be completed on a regular basis — showering, getting dressed, preparing a meal. While a healthy person may begin the day with an unlimited amount of spoons and uses only one spoon at a time for the most basic tasks of the day, a spoonie may start the day with only five total spoons and has to make decisions about which tasks absolutely must be completed that day and which tasks can be skipped. Because when the spoons are gone, so too, is a person’s energy to do anything else. 

For a long time, I didn’t consider myself a spoonie simply because I didn’t have the option of paying attention to my lack of spoons. My son still needed to be picked up from school, library books needed to be returned, dinner needed to be prepared. 

Though I have spent more than a decade as a chronic illness patient, I still haven’t figured out when to push through and do something despite my pain and fatigue and when to pay attention to my body and acknowledge I just can’t do something.

It’s not easy navigating this life. Thankfully, I have help.  

Last week, I had a Zoom conversation with Sandra Postma, a Book and Spoonie Coach, offering “guidance for writers with a chronic or mental illness or disability.” This was our second session, and as with my first session, I left this session thinking about a couple of re-framing statements Sandra shared with me. 

This week, I’d like to share two of Sandra’s brilliant statements with you:

“I am not a burden, my illness is.”

“Alongside my illness I am ..”

I’m thinking a lot about these statements. Thinking about how I can use these statements to help me be more kind and gentle with myself. 

Maybe they will help you, too. 

(Just so you know – Sandra knows I’m sharing this information and has given her consent for this blog. You can learn more about Sandra and the work she does on her website.)

My Current Reality Scares Me

Posted on by Wendy Kennar
My son and I at the National Portrait Gallery during our Washington, D.C. trip this summer.

During the last several months, I have come to a difficult-to-accept realization. Physically, I am not doing well. Honestly, this may be the worst I have felt for a considerable length of time, not counting the times immediately after a medical procedure (like my muscle biopsy). 

Last year, on our family trip to Maui, I reluctantly agreed to use a wheelchair in the airports. A good friend had advised me not to waste my legs walking through an airport and standing in line at security. She was absolutely right. But there was no question that I would walk, hike, and participate in everything my husband and son wanted to do — including parasailing and zip lining with my son.

This year, though, not only did I use a wheelchair in the airports, I also rented one to use during our summer trip to Washington, D.C. 

Since our July D.C. trip, there have been two other occasions when having a wheelchair would have made my life a lot easier. One was seeing Return of the Jedi in Concert at the Hollywood Bowl. The other was attending Back-to-School Night at my son’s high school. Both occasions were incredibly painful for me. Both occasions left no doubt that my legs can no longer do what, up until this point, they have been able to do.

A decade ago, I retired from teaching. And I think one of the reasons I have held on so tightly to all my other roles, all my I’ve-always-done-it, of-course-I’ll-still-do-it instances is because I’m terrified of having to give up something else. I am so frightened that my physical disability is worsening and the invisibility aspect of it will soon no longer exist,  and there will be no doubt in someone’s mind if they see me park in a handicapped parking space that I do indeed need that spot. 

I don’t know if this is true. No one does. In October, I’m scheduled to begin treatment for my knee that may (or may not) help my overall left leg pain. 

Meanwhile, each day feels a bit like an endurance test. A test I’m scared I won’t pass.  

It’s Pain Awareness Month

Posted on by Wendy Kennar
This picture was taken in July 2023, when our family was in Washington, D.C. I was super excited to explore the National Air and Space Museum, a museum I had wanted to visit since I was an elementary school student. And if you look closely, you’ll see I’m using my rented wheelchair as a walker. I didn’t cancel this trip because of my pain, because for me, that was “not an option.” (Taken from the famous words “Failure is not an option” spoken by Gene Kranz during the Apollo 13 Mission.)

September is Pain Awareness Month.

I’ve written about Pain Awareness Month before, last year in 2022 and back in 2021. 

This year, though, I don’t know what I can write that is new or offers a fresh take on chronic pain. I think that’s largely because I have been trying to deal with increasing pain. Basically, my pain is worse — in intensity and in location. (For many years, pain was limited to my left calf. That is no longer the case. Now, it’s my left calf, my left thigh, both knees, and since about two weeks ago, my left foot.)

This could very easily be a glass-is-half-empty type of blog post. 

But it’s not.

Because my son (now a sophomore in high school) shared something with me the other day that I think is defining worth writing about here.

On the drive home from school, my son told me about what he had to do that day during his Physical Education class. The laps around the track he ran. The stadium stairs he had to climb up and down, up and down, multiple times. 

By the time class was done, he was super uncomfortable. Sweaty. Slightly out of breath. All of which is to be expected.

“I know it’s not the same thing, but my knees were really hurting. It was hard to get dressed and then climb the stairs to my next class. And it made me think that this must be like what it is for you. But like, all the time,” he said. 

And I think my son’s comments truly illustrate the concept of Pain Awareness. No one can ever truly know my pain, but me. But this connection my son made, this attempt at putting himself in my shoes, was a beautiful gift he gave me.