It’s Pain Awareness Month

(You can’t tell from this photo, but I was in a lot of pain. But it was a great day! My family and I had enjoyed a fun family outing – which included a couple of hours in the car as well as an hour-plus of walking. And, I got these beautiful sunflowers – my favorite flower! So there were lots of reasons to smile. But my leg h-u-r-t!)

September is Pain Awareness Month.

It’s gotten to the point where I refuse to answer a nurse when he/she asks me, “What’s your pain level like on a scale of 1-10?”. (Just so you know, I don’t ignore the nurse. I simply explain I can no longer answer that question.)

I used to really try to answer. I’d look at the range of faces and short descriptions under the illustrations and try to figure out where I fit on that scale. 

But now I realize there’s no point. My pain level can change from day-to-day, hour-to-hour, minute-to-minute. 

And sometimes, many times, my pain level is irrelevant. It doesn’t matter how much pain I’m in. If it’s 3:00 on a weekday, then that means I need to pick up my son from school – regardless of how I feel. It’s non-negotiable. 

I rarely let pain stop me from doing my daily activities. Because if I did, I wouldn’t do anything most days — at least lately. (The pain has been off-the-charts the last few weeks which means more doctors appointments and changes to my medications.)

But also, I wonder what long-term pain does to me — my body and my mind? I’ve been dealing with UCTD since 2010 (even though I didn’t know it was until my diagnosis in 2011). Ten years of pain has to warp your perception of discomfort. A “5” on my scale, I’m sure would be at least a “9” on my husband’s scale. (This may be a very bad generalization, but at least when it comes to my dad and my husband, they are not as pain tolerant as my mom or I.)

Here’s the other thing about pain. Everyone experiences it. In some way, shape, or form, everyone is dealing with something painful. 

When you stop and think about it, that’s a powerful reminder to pause and really try to remember to treat others with compassion and kindness and patience. 

Because you never know what someone is dealing with simply by looking at them.

In Possession of the ‘Enough Stuff’

Even if I had pursued my first dream, if I had tried to become a United States astronaut, I wouldn’t have succeeded. Because now I know the truth. Apparently I’m claustrophobic.”

“The first time I had an MRI, I was completely unprepared for it. I thought an MRI would just be a fancy X-ray. Instead, I felt as if I was being swallowed up by a massive machine that slid me inside and wouldn’t let me back out. It was loud, it vibrated, and I felt like the whole thing was a very elaborate plan to see how long it would take until I cracked and pushed the panic button. (I kept it firmly in my grip, my thumb gently hovering above the button. Just in case. And to my credit, I’ve never used it.)”

On the surface you might not think my childhood dream of becoming an astronaut and my current identity as a chronic illness patient have anything in common.

But they do.

I’m proud to share my essay, “In Possession of the Enough Stuff,” has been published in SWFP Quarterly Special Issue 26. You can click here to read the essay in its entirety.

And, fun bonus! On Sunday, August 15th, Santa Fe Writers Project hosted an incredible reading on Zoom. I participated and read a portion of my essay. The whole reading was incredible, and I feel fortunate to have been a part of it. (If you’re pressed for time, I start reading at about 50 minutes in.)

Lost and Found

I lost my teaching career. Teaching was more than my job; it was my passion. My identity. However, the pain and fatigue from my autoimmune disease (Undifferentiated Connective Tissue Disease) made it necessary for me to ‘retire due to a disability.’

I found my second career, as a writer. Since I was no longer teaching full-time, I could write full-time. Personal essays I submit to literary journals and anthologies. Blog posts for my personal website. Assignments as a regularly contributing writer for a popular family-oriented website, MomsLA.com.”

My personal essay, “Lost and Found,” is a series of reflections — about what I have lost as a direct cause of my autoimmune disease and what I have found as a result. It’s a way of acknowledging the ways I have changed, the ways my life has changed. 

Lost and Found,” was recently published in the Summer 2021 issue of Breath and Shadow. You can click here to read the essay in its entirety. 

Surviving and Thriving

When it comes to the most important roles in life (in my opinion – spouse and parent) no one gives you a handbook with practical, helpful tips and tricks.

And so it was when I received my autoimmune disease diagnosis. My rheumatologist gave my illness a name, and started me on medication, but he didn’t provide any advice on what it would mean for me long-term, what I should do that day, and the day after, and the day after that one.

Thankfully there are other patients out there, telling their stories and sharing their experiences. 

I recently read Ilana Jacqueline’s Surviving and Thriving With an Invisible Chronic Illness: How to Stay Sane and Live One Step Ahead of Your Symptoms.

It is the book I wish my doctor had handed me that November morning all those years ago. 

While I admit some of the advice and some of the anecdotes don’t apply to me (I’m not trying to decide if I can move out of my parents’ home, for example) I’m still glad I read it. And as you can see from the photo, I still found a number of passages to highlight and mark with sticky notes.

For example:

“Life with chronic illness is about managing expectations while keeping the hope alive enough to still make plans for the future.” (So beautifully put)

“Chronic illness isn’t something you beat or fight. It isn’t a race or a life-long quest to return to normalcy. You don’t reverse, battle, or spar with it. Chronic illness is something you outsmart.” (I haven’t figured that part out yet. I admit, most of the time I’m still trying to resist my chronic illness, still trying to prove I’m tougher and stronger than it is.)

“Acceptance isn’t defeat: It’s a declaration of self-respect under irrefutable circumstances. This is where you are and you’re going to make the best out of every moment of it.”  (I had never thought of acceptance in terms of self-respect.)

“Learning how and when to ask for help is going to be a huge asset to you in life.” (I continue to struggle with this one.)

“It is your body and your responsibility to treat it with confidence, intelligence, and above all, compassion.” (An important lesson for every human being.)

Lessons Learned

“Now, my bandaged leg was tender and sore, and walking was more like a slow, laborious shuffle.

‘I know it’s hard now, but it will get better. This will pass,’ Ryan said. His tone was soft. Soothing.

I bit my lip, took a breath, and smiled.

Those were all the same words I have spoken to Ryan each time he’s been sick. Reminders that he’s not alone. Reminders that I’ll see him through it. Reminders that the discomfort (whether it was a high fever, a bout of vomiting, or a hard coughing) would pass and wouldn’t last forever.”

The passage above is taken from my personal essay, “Lessons Learned,” a reminder that our children are always watching, always listening, always learning from the adults in their lives. I’m proud to say my essay was recently published at MUTHA Magazine. Click here to read the essay in its entirety.

The Octopus in My Life

I’m pleased to share The Mighty has published one of my personal essays, “How My Autoimmune Disease Is Like an Octopus.” 

I wrote this piece in response to one of The Mighty’s monthly writing prompts. “What’s something related to your health condition you had to learn the ‘hard way’?”

Here’s an excerpt from my essay:

“No one told me this would be all-encompassing. That having an autoimmune disease was like having an octopus in my life, tentacles stretching out and touching one area of my life after another.” 

You can click here to read the essay in its entirety. 

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.

8 Things Doctors Can Learn From Teachers

It’s definitely not a doctor’s office or exam room. Still, doctors can learn a lot from teachers.

I first became ill ten years ago. 

In that time I’ve seen a lot of doctors.

I don’t look forward to these appointments. Especially when I’m seeing someone new.

I dread having to explain and describe my symptoms and my pain to yet another doctor. I’m tired of re-hashing my story, my medical history. I’m tired of trying to explain to someone what my days and nights are like. 

And after all that, I’m tired of the non-answers, the uncertainty and confusion that my particular medical condition seems to present.

It’s been my experience that doctors could learn a thing or two (or eight) from teachers. A parent/teacher conference does, in fact, share similarities to a doctor’s appointment. 

Click here to read my personal essay “8 Things Doctors Can Learn From Teachers.”