10 Years (and Counting) of Chronic Contradictions

This month is a 10th anniversary for me.

An anniversary that isn’t cause for celebration.

But is cause for acknowledgement and reflection.

10 years ago this month, I woke up on a Sunday morning and couldn’t stand. For a few days, my left calf had felt sore and tight – the leftover feeling you get after a muscle cramp.

But on this particular Sunday morning, my calf wasn’t just sore and tight. It was red. Elmo-red. And swollen. And I couldn’t stand up. 

I knew something was wrong when the emergency room nurse admitted me as quickly as she did.

My prior emergency room experience was more than five years earlier when I cut the palm of my left hand while trying to cut open an avocado. I remember sitting in the waiting area that evening, my arm raised, my hand wrapped in dishtowels waiting to see a doctor. Waiting for stitches. 

This time I was immediately admitted.

I knew that wasn’t a good sign.

But never could I have imagined that my left calf’s “issues” weren’t a temporary problem. Never could I have imagined that Sunday in July was just the beginning. 

And never could I have imagined that my life would forever be changed.

“Even though my disease has been a part of my life for several years now, I don’t feel as if I’ve reached a level of total acceptance and understanding. I am more and more convinced that living with a chronic illness is synonymous with living a life full of contradictions.” 

That passage is from my essay, “Chronic Contradictions,” which is included in the recently published anthology, The Things We Don’t Say – An Anthology of Chronic Illness Truths.

Though I wrote those words about three years ago, they’re just as true today.

 

An Expression of ‘Me-Ness’

One of my bad habits is collecting paper – articles, advertisements, clippings. I cut them out, sometimes tear them out, and stash them away – in folders, in a wicker basket on the shelf under my coffee table, in an accordion folder. 

One of my projects in recent weeks has been to sort through these papers, to re-read the articles and decide if I want to keep them or recycle them.

That’s how I came upon this ad for Pandora jewelry.

On eight of my ten fingers, I wear nine rings. And while only one of my rings is a Pandora ring, I love the ad. 

Because my rings are an extension of my personality. 

To quote the ad: 

“Your rings aren’t just rings. They’re a punch of style. A bold expression of you-ness.”

Which is why it was devastating when I could no longer wear my rings. 

You can click here to read a personal essay (“How My Identity Has Been Affected by the Changes in My Hands Due to Illness”) I wrote a few years ago. My autoimmune disease may manifest itself as pain and weakness in my legs, but that doesn’t mean my hands, and my rings, haven’t also been affected. 

Readers, I’m curious. Do you wear any jewelry that you consider to be an “expression of you-ness”? Feel free to share in the comments section.

 

Invisible Forces Can Be Scary

We’re all waiting for the rainbow. Hang in there!

Lately I’ve been thinking about this invisible disability of mine that has changed my world (and by extension, my family’s world) and this coronavirus that has changed the entire world.

My autoimmune disease is invisible. Just by looking at me you couldn’t tell I have a blue handicap parking placard in my car’s glove compartment. 

When I was still visiting doctors and specialists trying to figure out what was going on with my legs (it took over a year to receive a diagnosis), my biggest concern was the possibility I may have passed on this mystery illness to my son. Ryan was two years old when I first became ill. He was described, by some, as a “late walker.” I was experiencing pain and inflammation in my legs. Was there a connection?

Thankfully, my autoimmune disease is mine; it is limited to me. There is no family history, and there is no fear that I have passed this on to my now twelve-year-old son. 

COVID-19 doesn’t work that way. It’s a scary, invisible, powerful force lurking just outside our home. On things we could touch. On air we could breathe. 

The most scary thing to me, in regards to this coronavirus, is that it is possible to be infected and yet be asymptomatic.

My autoimmune disease isn’t fatal. 

But COVID-19 can be.

Wear your masks. Keep your distance. Wash your hands. 

Please, continue to be safe and careful out there.

 

Because of Ryan

Ryan, age 8. Strong enough to lift the truck that towed the space shuttle Endeavour. California Science Center, July 2016

I first became ill when Ryan was just two years old. He has grown up knowing me like “this.” “This” meaning pain in my legs, prescription bottles on the counter, doctors appointments written on the kitchen calendar.

It breaks my heart that Ryan has learned a powerful lesson at such a young age. People get sick. All different kinds of sick. Through no fault of their own. And sometimes there’s nothing you can do to make the illness go away. The only thing you can do is learn to live with it as best you can. 

But there is a flip side to all this. 

There has to be.” 

Those lines were taken from one of my personal essays, “Because of Ryan” which was recently included in the fourth issue of Please See Me. 

Click here to read the full essay. 

 

What Do You See When You Look in the Mirror?

The many family photos on our refrigerator. There is a reference to these photos in my essay.

How would you complete this prompt:  “When I look in the mirror, I see…”?

My latest publication is a personal essay answering that question. As I wrote in my short biography for Ailment – Chronicles of Narrative Illness, “My personal essay describes all the different “Wendy’s” I see when I look in the mirror. Living with an invisible disability, an autoimmune disease called Undifferentiated Connective Tissue Disease, has changed the way I look at myself and changed the way I see myself.” 

Click here to be re-directed to Ailment – Chronicles of Narrative Illness to read the essay as well as other pieces exploring lives with chronic mental and physical illness.

 

Just Because You Can’t See It, Doesn’t Make It Less Real

You don’t see the wind. But you know it’s there when you hear the wind chime.

“The battles that count aren’t the ones for gold medals. 

The struggles within yourself – 

the invisible, inevitable battles inside all of us – 

that’s where it’s at.”

– Jesse Owens

I had an experience that made me think of this quote. 

Many times over the years I’ve been told I don’t look sick.

And I don’t feel sick. 

I think of sick as throwing up, coughing, fever. I’m not sick. (Thankfully).

I am uncomfortable. In pain. 

And the worst part is when the pain just randomly hits out of nowhere. Sometimes the pain makes sense. I spend 30 minutes pulling weeds and gardening, my legs hurt. My son and I go shopping at Target (such a huge store), and I’m hurting.

But a couple of weeks ago, my husband and I went out to lunch. I was ok. We were walking to our car in the adjoining parking lot, and all of a sudden I clutched my husband’s hand. An intense pain gripped my left thigh. We found a ledge to sit down on. And while I tried to take deep breaths, I quietly cried behind my sunglasses.

I cried because of the pain.

And, I cried because I was out with my husband, celebrating his birthday, and I couldn’t even walk to our car. 

The pain subsided enough for me to get up and keep walking. But for the rest of the day my thigh hurt. The kind of lingering hurt you get after you’ve clumsily walked into the corner of a table or something. 

Except I hadn’t walked into anything. I had simply walked.

And some days, it’s harder than others.

Maybe Daring to Be Different Isn’t Always a Good Thing

Painting your hand is just one way to show support of Rare Disease Day

Saturday, February 29th is Rare Disease Day. “The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives.” 

I became ill in July 2010 but wasn’t diagnosed with Undifferentiated Connective Tissue Disease until November 2011. When my rheumatologist finally put a name to my symptoms, he told me UCTD is rare and that if I wanted to walk around and call it “the Kennar,” I could.  

At the time, I joked with my doctor, telling him I had always “dared to be different,” so why should this be any different.

But since that morning, I’ve changed my mind. 

I don’t want a rare condition most people have never heard of. I’d much rather live with a more common, even ordinary, chronic medical condition.

A disease doctors understand and can easily treat.  

Maybe even a disease with its own awareness month or magnetic ribbon I can attach to my car.  

My Ongoing Quest For Heroism

It hurt to get up on that fence, but I was determined to do it and have this special, silly moment with my son.

“Above all, be the heroine of your life, not the victim.”

– Nora Ephron

 

I am trying very hard to be the heroine of my life. 

In the beginning of this medical odyssey (which began almost ten years ago), no one knew what was going on inside my body. Which meant no one knew how to help. 

I did everything every doctor suggested. Went to every appointment. Met with every specialist I was sent to. Did every test doctors recommended. 

For my readers who don’t know, I first became ill in July 2010. I didn’t receive my diagnosis until November 2011. During that time, I met with a neurologist, geneticist, rheumatologist, vascular surgeon, and ophthalmologist (did you know certain cancers reveal themselves through your eyes?).

Back then, I automatically said yes to everything. My body felt out of my control. I was scared. My son was  two years old when I became sick. I needed answers, and I needed help.

Now, almost ten years later, I know I’m dealing with a chronic illness, and nothing fatal (thank goodness), and I’m not so quick to readily agree to a doctor’s “recommendation.” I probe for further information. I email my doctor and ask for clarification on something he said during my appointment. And I ask a lot of questions. 

Why are you recommending this procedure?

What are you looking for?

What are the side-effects?

I didn’t “do” anything to get sick. And there’s really nothing I can do to make it go completely away.

In that sense, I am a victim. 

But, I can exercise some control over how I choose to live with my autoimmune disease. Which means asking questions, taking my time to make a decision about a procedure, and gathering as much information as I can.

And in that sense, I am a heroine.

It’s My Illness, Not Me

Sometimes we all need reminders. (I found this message on a sidewalk last month.)

 

It happened again. 

A doctor told me I’m weird.

I’ve written about this before. Back in the fall of 2018 and again in the summer of 2019.

The Mighty published my personal essay “The Hard Realties I’ve Faced After My Doctor Told Me, ‘You’re Just Weird.’

Now it’s winter 2020.

And apparently, from a medical standpoint, I’m still weird.

Here’s the thing. I’ve said it before, I’ve written it before, and I’ll write it again – I’m okay with being weird. I know a lot of people think it’s weird I like to eat leftover Thanksgiving turkey cold and dipped in ketchup. Maybe it’s weird that I always have to sleep with blankets covering me. Some might find the nine rings I wear to be weird.

Weird can be good. Weird can be unique. And special. And celebrated. It tells the world I don’t need to be like everyone else.

Except – when it comes to medicine.

I’m going through a rough time right now. Actually, for the last several months. My rheumatologist referred me to a neurologist in his office. I’ve had two different (unpleasant) tests/procedures. 

One test revealed “muscles abnormalities.” Abnormalities – just a fancy word for weird.

The other test supported the findings of the first test.

But when my rheumatologist walked into the exam room the other day for my follow-up, he told me he had met with the neurologist, reviewed the findings, and in his words, “She says you’re weird.”

“I’ve heard that before,” I replied.

But inside I didn’t say that. In my imagination, a whole other scenario played out. I got off the exam table and started screaming at everyone. 

“Don’t call me weird,” I hollered, enunciating each word.

“Tell me you don’t know what to do. Tell me you don’t know how to help me. But do not f – – -ing call me weird. It’s not me that’s weird. It’s this disease.”

I had images of me standing outside on Wilshire Boulevard, using a baseball bat to whack the street signs. 

The police officers would come. I would admit all my wrongdoing. Take full responsibility. And tell the officers that I was just overcome with emotion. I had been called weird once too many.

Because when my doctor told me I was weird, I knew we didn’t have any more answers. I knew I wasn’t going home with a new treatment plan. 

I live with pain. Each and every day. 

Pain isn’t weird. Pain is exhausting. Pain is depressing. Pain is want-to-pull-the-hair-out-of-my-head upsetting. But it’s not weird.

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.