All I Can Do is Take It Step By Step

I recently finished reading Claire Cook’s The Wildwater Walking Club: Step By Step. It was a fun, easy read. Exactly what I wanted. 

The book is meant to make readers feel good. To transport readers into another world, Noreen’s world, as she walks with Tess and Rosie and navigates life as a newly certified health coach. 

So, why then, were there times I felt sad? 

Why did this feel-good book leave me feeling a bit down at times?

It took me a while to figure it out. 

And then I realized – it’s the walking. (Which is a big part of the book.)

I no longer know the easy joy and pleasure that comes from going on a daily walk.

I do continue to walk each day in my neighborhood, but they’re not always joyful. Not always pleasurable. 

I walk. Certainly not at a quick pace. And not to count my steps. 

But to walk. To exercise. To spend time with my family outdoors. To observe our neighborhood.

But my walking is … I struggle for the right word. Difficult? (Sometimes.) Unpredictable? (Sometimes.) Pain-inducing? (Sometimes.) Exhausting. (Sometimes.)

I don’t always experience more pain after a walk, but sometimes I do.

Sometimes I experience random pain during a walk. A step off a curb that sends a jolt up and down my left leg.

A sudden gripping pain in my calf, that causes me to stop and wait and hope it will pass so I can continue walking. But then the walking has a bit of limping to it. 

If I walk while in pain, it’s still walking. 

And so I keep doing it. 

Because some days are better than others. 

And I walk, step by step, hoping for one of those better-pain days.

 

There Is No Shame

I saw this on the sidewalk recently, before a doctor’s appointment. A thank you to the artist!

“I’ve been living with Undifferentiated Connective Tissue Disease for ten years now, and I’m still learning how to do it. I don’t know if there ever comes a time when you reach the finish line and achieve the “gold star” for figuring it all out. You just keep figuring it out, moment-by-moment, day-by-day, and wake up the next day, and do it all again.”

And so begins my recently published essay, “There Is No Shame in Life With Chronic Illness,” published at The Mighty. (Click here to read the article in its entirety.)

The conclusion of the essay goes like this:

“There is no shame in your body not working/functioning/behaving as it used to. Your body, your life, you – are still a marvel. Never forget that. 

There is no shame in who you are and how you feel.

There is no shame in needing to learn this lesson over and over again.”

It’s an important lesson as we look with longing and hope to the new year.

Wishing you all a peaceful, healthy 2021. 

Jewelry and Pain Are Not Mutually Exclusive

What is someone in pain “supposed” to look like?

Apparently, some people who know me find it hard to believe my pain can be pulling-my-hair, biting-my-finger-in-agony kind of pain when I’m still wearing all my jewelry. And it’s a lot – bracelets, nine rings, earrings, anklet. 

But guess what?

“Yes, You Can Wear Jewelry and Be in Pain at the Same Time.”

That is the title of my recently published essay. Click here to be re-directed to The Mighty to read it in its entirety.

 

Temporary Reality, Permanent Fears

Post-surgery. September 2020

What scares you?

Some fear natural disasters like earthquakes or tornados.

Others fear creatures such as snakes or rats. 

Many fear illness and suffering of any kind.

I’m scared of many things. 

Though I have lived in southern California my entire life, I’m terrified of earthquakes.

I’m scared of harm coming to those I love, and being unable to protect them.

And I’m scared of my autoimmune disease and the very real possibility of my body deteriorating.

Back in September, I had a muscle biopsy on my left leg.

And in the weeks after the surgery, some of my worst fears came true.

You can read the full story, “When My Permanent Fears Became My Temporary Reality,” by clicking here and being re-directed to The Mighty.

It’s Not All in the Family

 

Three Generations – my mom, my son, and I. 2015

“It still isn’t easy for me to describe myself as a disabled woman. For a long time I didn’t think a disabled woman sat on the ground pulling out weeds. Or played handball with her son. Or helped her elderly neighbor carry in groceries. But I do all those things. Because being a disabled woman doesn’t look the same for every woman. And it doesn’t look the same for me each day.” 

That paragraph is taken from “It’s Not All in the Family,” a personal essay I wrote that was published in the fall issue of Breath and Shadow. You can read the essay by clicking here.

Could I? Should I? Would I?

March 1, 2013. My last day as a public school teacher.

“ ‘Can you still teach?’ ” 

‘Kind of,’ I answered.

‘You either can or you can’t. We can’t continue with this process if you can still teach.’

It was November 2012, and I didn’t know how to respond to the CalSTRS (California State Teachers‘ Retirement System) representative sitting across from my husband and me.  

Can you still teach?’ 

There was a part of me that could still teach, that still wanted to teach. I’d only been teaching for twelve years. I wasn’t supposed to be looking into retirement this soon.

But this wouldn’t be a traditional retirement. This would be a ‘retirement due to a disability.’  

Could I still teach? ” 

The words above are taken from “Could I?, Should I?, Would I?” a personal essay that was recently published as part of Amsterdam Quarterly’s twenty-ninth issue “Choices.”

You can click here to read more about the story behind my decision to retire from my teaching career back in 2013.

Weird? Strange? No. It’s My Reality

A young child might think a non-green tree is weird.

Let me set the scene.

A virtual appointment with a neurologist, a man I have never met before. This was a doctor my rheumatologist and my neurologist both hold in high regard and wanted me to meet with. For a second opinion, for a different perspective, for a new set of eyes to look at me, my medical history, my test results.

He asked questions, I answered. He looked at my legs over a screen. He asked me to stand and sit and squat and tip toe and balance on one foot. Some things I could do, some I couldn’t.

And after all that, this doctor looked at me across a screen and said, “It’s strange.” (In all fairness, this doctor did refer to my symptoms and labs as strange rather than me.)

I momentarily bit my lip and replied, “I’ve heard worse. Usually I hear the word ‘weird.’ “

This doctor chuckled and said, “Weird works.”

And then I finally did it. I finally had an answer for a doctor in the moment.

“No, weird doesn’t work,” I began. “Because nobody knows what to do with weird. No one knows how to treat weird. No one knows how to help weird.”

A thirty-minute initial consultation with no answers. The doctor needs more time to review my medical history. I need to contact him after an upcoming ultrasound, and then we’ll set up an in-person visit for him to look at and touch my leg.

In the meanwhile, I’m left feeling despondent. 

And still with pain in my leg.

You can click here to read “The Hard Realities I’ve Faced After My Doctor Told Me, ‘You’re Just Weird’ “ back in 2018.

 

Pain Isn’t a Once-a-Year Topic for Me

 

Sometimes it’s hard to look at my legs with gratitude for all they can still do.

 

September is Pain Awareness Month, a “time when various organizations work to raise public awareness of issues in the area of pain and pain management.” 

Have you ever seen that 1-10 pain scale? The one doctors show you, with a range of facial expressions? 

I don’t like that scale. And I don’t like being asked to rate my pain. 

I remember a visit to a pain management doctor. During the intake, the nurse asked me to rate my pain, right then in that moment. I refused. 

I’m usually a very compliant patient, obedient and direction-following.

But, let’s face it. After 10 years of living with my autoimmune disease, I’ve gotten really good at pushing through the pain. I have to. As a result, my pain scale most likely doesn’t look the same as yours. What I now consider a 6, my husband would probably classify as a 10. 

Here’s what I can tell you about my pain. It fluctuates. And not just day-to-day. Sometimes hour-to-hour, even minute-to-minute.

In the interest of pain awareness, I thought I’d share just a bit of what my pain is like.

  Sometimes, my left calf is tight. That tight feeling you get before, during, and after a muscle cramp. Except my tightness lingers. For hours.

  Sometimes I don’t have pain. I have a general heaviness. My now twelve-year-old son and I used to play “squish” when he was younger. It was a wrestling-type game that happened either on the floor or on my bed. We’d tickle, but generally he would end up “squishing” me – pinning me with his body. That’s how I feel. Like I’m walking around, cooking dinner, watering my plants, and I have an invisible child strapped across my legs, weighing me down.

  Sometimes I have a throbbing pain. You know that pain you get when you’ve bumped into the sharp corner of a table? You can’t see a bruise, but the area is sore and sensitive and just hurts.

  Sometimes I just hurt. Like I’ve been pricked with needles (and I have been, so I know what it feels like). My calf is sensitive, and I have to roll up my pants so the fabric doesn’t touch my skin.

  Sometimes the pain is rocking-back-and-forth, pulling-at-my-hair kind of pain. Sometimes it just randomly hits. Sometimes I know it’s coming. My calf muscle may begin twitching. On certain occasions, I can even see it moving. It makes me think of when I was pregnant, and my husband and I would joyously watch my stomach move when our son would turn or stretch. There is nothing joyous about this though.

  Sometimes my leg feels twisted somehow. As if someone took my muscle and twisted it, the way you wring out a washcloth. And simple things, like bending to pull something off the bottom shelf of the fridge, or bending down to pick up the mail off the floor, or standing on my toes to reach the colander from the shelf in the kitchen, aren’t so simple for me to do.

And I could go on. 

I don’t want pity. Don’t feel sorry for me. 

Feel compassion and kindness and patience for everyone you encounter. Because you never really know someone else’s pain.

 

The Article I Wish I’d Read After My UCTD Diagnosis

The first thing most people do when they have any sort of medical-related question is head to Google.

We Google symptoms and try to self-diagnosis. We search for causes and treatments.

Then you get a diagnosis and head back to Google. What does the diagnosis mean? How are others living with this particular illness? What adjustments are needed? What does the day-to-day look like?

That’s what I did, back in November 2011, when I received my autoimmune disease diagnosis. 

Except Google didn’t have a lot of resources available. My autoimmune condition is rare, and there wasn’t a whole lot of available information out there.

Click here to be re-directed to TheMighty.com to read my recently published essay, “The Article I Wish I’d Read After My Undifferentiated Connective Tissue Disease Diagnosis.”

 

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.