Permission Not to be “Strong Tonight”

Do you have a go-to song?

A song you listen to when you need that extra bit of encouragement? That extra motivation to keep pushing through?

I have those songs, but I also need another kind of song.

A song that gives me permission to just stop. Stop trying to be so strong. Stop trying to hold it all together. Stop trying to keep it all inside.

You can click here to be re-directed to The Mighty to read my personal essay, “The Rita Wilson Song That Helps Me Deal With My Chronic Illness.”

Readers, I’d love to know about your songs? Which songs bring you comfort? Which songs help you? Feel free to share in the comments.

Chronic Illness and an Octopus

Over the years, more and more of my writing has described different aspects of my life with a chronic illness. 

Writing about it is different than talking about it.

But that’s what I recently did.

Julie Morgenlender, editor of The Things We Don’t Say: An Anthology of Chronic Illness Truths, recently spoke with me about my experience living with a chronic illness. Among other things, we talked about invisible disabilities and illnesses, ableism, diagnoses, and octopuses!

You can watch the video on YouTube by clicking here.

What I Really Mean When I Say ‘My Leg Kinda Hurts’

It began with a writing prompt. Then some notes. Then several drafts. And resulted in a completed essay published on The Mighty.

 

“ ‘My leg kinda hurts, but it’s okay.’

That’s my standard answer when I’m asked how I’m feeling. I hesitate to say more. I don’t want to tell them (my husband, my son, my parents) how bad my pain is, simply because there’s nothing any of them can do to ease my pain.”

You just read the beginning of my recently published essay “What I Really Mean When I Say ‘My Leg Kinda Hurts’.” 

The reality is more complicated than that.

Click here to be re-directed to The Mighty to read my essay in its entirety.

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.

 

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.”