It’s a Pain

The nurse called my name and walked with me from the waiting room to the exam room. In the exam room, she had me step on the scale, and she checked my temperature and blood pressure. And while she stood at the computer, inputing the numbers, she asked me what my pain was like today.

This was about 9:30 am Tuesday morning. My pain was bad. But, the day before had been worse. After waking up to my 6:00 am alarm, I had made the bed, brushed my teeth and washed my face, gotten dressed, and come downstairs. Moving around I felt stiff. Standing up brushing my teeth, I put my weight on my right leg and foot. My left side felt weak, like it might give out. I knew it would be hard to walk down the flight of stairs to our living room and kitchen. I hadn’t expected to be crying before I reached the final step. 

Tuesday morning, appointment morning, there were no tears. Grimaces. Limps. Slow, laborious movements. But no tears. So technically I guess the pain was better, but it was still friggin awful. 

“It’s a hard question to answer when you live with chronic pain,” I told her. 

She didn’t look up.

I tried waiting her out. 

She wanted a number. I finally told her 7.

Was it a 7? I don’t know. I know my left leg felt pressure, as if something heavy was placed on my lap. My left calf felt tight, like it was stuck in almost-muscle cramp. I know getting in and out of my car wasn’t all quick, graceful moments but more like slow, intentional movements. 

When I met with the doctor, we reviewed all my medication, pain-related and otherwise. He told me the goal is to get me functional, so I don’t let the pain stop me from doing things in my life. 

Um, hello? 

What?

“To get me functional?” 

“So pain doesn’t stop me?” Most people who know me know that isn’t the case. 

Perhaps my favorite question was, “when did the pain start?”

I told him the truth. “2010.”

And, as if all that wasn’t bad enough, the doctor asked me his own pain-rating question. Except he didn’t want to know my current pain. Instead he asked, “What would you say was the average for the pain you experienced last week?”

A whole week? I have no idea, and that’s what I told him. My pain fluctuates. Pain can start off feeling incredibly intense and gradually ease up as the day goes on. And the flip side of that is also true — pain can be moderate and then, while doing one of my physical therapy exercises at home for example, something gets triggered and I need an ice pack on my knee, and I’m feeling much worse than I was.

Most frustrating was that my appointment was with a pain management group. These are healthcare providers who work with patients who live with chronic pain. And they should know that if you suffer from chronic pain, you’re looking at that pain scale very differently than someone who is dealing with acute pain. 

Acute pain is temporary. It’s pain that is caused by the result of something specific — an accident or injury of some kind, like falling down or getting hurt while playing a sport. But the key word is temporary. Acute pain won’t last. It will impact your daily life, but not forever.

Chronic pain, however, is long-lasting and difficult to treat. What works for one person might not work for another. And what worked for me three years ago may not work for me now.  

The doctor told me that no pain medication is going to make the pain go away completely. But the goal is for the pain medication to make a significant difference in my life so that my pain doesn’t stop me from doing what I want and/or need to do. 

“We don’t want your pain to stop you from being functional,” the doctor said.

I looked at the doctor in dismay. Shock. Disgust. Impatience. Probably a combination of all of those. 

I told him what I have told other doctors — I think when you live with pain for a long time, you get good at pushing through. You have to learn to live with the pain, alongside the pain, if you’re planning on living your life as fully as you can. 

The truth is no one can really know what my pain feels like. We each experience pain in our own way. However, I am convinced that those of us living with chronic pain, exercise a specific set of muscles. My pain level 6 would be someone else’s level 9. 

Those of us living with chronic pain have more than enough to deal with. I think we deserve a great deal of respect for all we do, including going in to see a doctor. That by itself is a big deal. 

And if I could ask healthcare providers for one change:

Please oh please, stop making patients use an emoji-like pain scale to describe our pain. 

I Don’t Know What You Know Me From

The book is called, I Don’t Know Where You Know Me From: My Life as a Co-Star. But I know exactly where I know Judy Greer from. The Wedding Planner. 27 Dresses. 13 Going on 30. What Women Want

Obviously you know I’m not an actress and I have no immediate connection to the world of movies. So why did I pick up this memoir?

Many reasons:

1 – Because I browsed in a local independent bookshop and since the #22in22 challenge, I don’t visit an indie bookshop without buying something. 

2- It’s signed by the author.

3 – I did like Judy Greer’s characters in the movies I listed above.

4-  I’m a memoir-writer and am curious about other memoirs. How do authors structure their books? (In this case, the book is organized into three sections: Part 1 – Early Life; Part 2 – Hollywood Life, Part 3 – Real Life.)

5 –  As someone who has had difficulty in deciding where my memoir ends, I’m always interested in reading how someone made the “where-to-end-the-book decision. (Lliving with an invisible disability doesn’t have a clear-cut ending point. It’s not like I start and then finish treatment as is often the case with other illness stories.)

6 –  I’m curious about other people. I truly believe everyone has a story.

The memoir is a fast and fun read. And surprisingly, quite relatable. Which is actually reason number 7 why I purchased this memoir — Human beings are so much more alike than we often think we are. I have never peed in a stall next to a star. (At least, I don’t think I have. In Part 2, there is actually a chapter called, “Celebrities I’ve Peed Next To.”) Yet, I did find myself nodding, smiling, laughing because a lot of what Ms. Greer writes about is quite relatable. 

“And I am the John Hughes generation. I was waiting for my Blane, my Jake Ryan, and I am not a saint, I’m sorry, but I was a little jealous when Nicole got to go to a dance while I stayed home, wrote in my diary, and watched my VHS tape of Pretty in Pink again.” 

Pretty much all of Ms. Greer’s second chapter, “I Used to Be More Ugly,” resonated with me. In fact, there is one photo that reminds me of a Halloween costume I wore many years ago, when I was trying to dress like Madonna and Cyndi Lauper. 

“My mom told me when I was little that I needed to toughen up, but I didn’t think I would have to rely on that advice as an adult. Shouldn’t I be tough by now? I want to be beef jerky, not whipped cream.”

“… it made me nostalgic for those times, when we were all on a more even playing field. I want to go back to simpler times, when people were famous for their specific talent, when actresses looked more natural, when their faces moved, when I knew the names of the people in the magazines.”
Ms. Greer goes on: “I guess I just miss the times when people could just look how they looked and it was personality, talent, and charisma that mattered most, not who wore it best, …” 

Also highly recommend the chapter, “Ashton Kutcher Gave My Dad a Harley.” It will renew your faith that there are good people out in the world and that wonderful surprises can, and do, happen. As Ms. Greer writes, “Sometimes for no reason at all, someone does something unbelievable, unselfish, and generous.”

I enjoyed reading about Ms. Greer’s idea for a perfume named, “‘Intolerance, for the woman who just can’t take it anymore.’ It’s inspired by bad drivers, people who don’t use their left-hand turn signal, people who don’t use their right-hand turn signal, tardy friends, line cutters, slow (or worse, chatty) checkout clerks, music playing while on hold, faulty DVRs, airplane seat kickers, airplane seat headrest grabbers, loud cell-phone talkers, text-and-walkers, people who don’t silence their phone in the theater, and L.A. traffic.” 

Also highly recommend the “Drugstore Therapy” chapter. “I’ve yet to have a problem so huge that a midnight trip to a twenty-four-hour drugstore couldn’t give me at least a few moments of calm and clarity.” She goes on, “… but there is something about a late-night drugstore run that promises change, and in these moments, all I really want is change. I want to not have the problem I am having.” 

“Sometimes I do wish I could just have the same job every day; it seems comforting to me — to work with the same people all the time, know your salary every year, know when you can take a vacation and plan it. I think I could get used to that. A little stability would be so different, and I find myself daydreaming about it, especially now that I’m married and have stepkids.”

I also recommend Ms. Greer’s Manifesto. “There’s a lot of peaks and valleys in the life I’ve chosen, but my mission statement reminds me to focus on what matters most. When life is awesome, it keeps my head from getting too big, and when things are shitty, it reminds me that my life is still pretty awesome.”

Friends, have you read Ms. Greer’s memoir? What movie have you seen that included Judy Greer in its cast? Let me know in the comments.  

Also, I announced this on Instagram but allow me to share it here: my friend, author Nicole Annbury, recently published her second novel, The Signature Line. If you subscribe to my Substack, you will be entered into a drawing to win a signed copy of The Signature Line. The drawing will take place on Friday, February 20th. So be sure to subscribe!


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.

A Bit of Book Love

Since Valentine’s Day is only a few days away, I thought I would use this week’s blog post to share books in my collection that contain the word “Love” somewhere in the title.

I believe the world desperately needs more love. So, with that, I present to you this week’s blog post — a sort of Bookish Valentine to readers and writers. 

This photo features:

P.S. I Love You by Cecelia Ahern

Twenty-One Truths About Love by Matthew Dicks

Love & Saffron by Kim Fay

Somehow: Thoughts on Love by Anne Lamott

Unorthodox Love by Heidi Shertok

Book Lovers by Emily Henry

A Brush with Love by Mazey Eddings

Eat Pray Love by Elizabeth Gilbert

Must Love Dogs by Claire Cook

The Love Simulation by Etta Easton

The Love Haters by Katherine Center

Friends, which books would you add to this list? Within your own collection, do you have any books that have the word “Love” in the title? Feel free to list them in the comments.

Wishing you a day of love and friendship and enjoyable reading time — on Valentine’s Day and every day!

Please note: I am including a link to buy the books 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.


It’s Hard Work

Each afternoon, I park the car near my son's high school and go for a walk in the neighborhood, before the dismissal bell rings. I usually walk for about ten minutes.

Last week was a “hard” week. 

I added quotation marks because I’m not certain that hard is the most accurate word to use to describe last week’s experiences. 

Let me tell you about it:

On Monday, I went in for my three-month follow-up with my rheumatologist. These appointments are rather brief, mainly because my doctor feels like things are “under control.” My current medication is “working” in that my inflammation levels have stayed more-or-less steady for the last year or two. (Again, the quotation marks because working doesn’t exactly represent my daily experiences.) From the doctor’s perspective, everything is going well. 

But it’s not.

Before he hurried out my exam room and into the room next door, I told Dr. P that I understand my labs look good in his eyes. But, I told him, I feel awful. Every. Single. Day. “So even though it looks like I’m doing great, I’m not,” I told him. 

He nodded. He told me all he can do is go by the numbers.    

On Tuesday, I had an appointment with my physical therapist, C. I haven’t been to physical therapy in over a month, because C had been on vacation for a while. However, I have been consistently doing my PT homework — daily walk(s), using my pedal machine twice a day, and working through my stretches/exercises every other day. 

C and I chatted while I used the armless-elliptical machine. He asked about my walking — the distance covered, the amount of time it takes. And I told him that my son told me it looks like I’m limping more than I ever have before. We talked about my treatment plan for the next few months. 

Because the reality is I am not an “easy” patient. (Again, easy may not be the right word.)

Doctors, in my experience, tend to focus on the labels — the diagnosis, the medication, the numbers. So my rheumatologist reviews labs and on his end, things are going well. Yet, each time I see him, I try to explain just how hard things have gotten. He knows I own a wheelchair. He knows how hard grocery shopping has become. He knows I wake up, every morning, already in pain. 

Likewise, as great as C is — I have worked with several physical therapists over the years and have never worked with anyone like C before! — I’m not the type of patient he is used to working with. I don’t have an injury that twelve weeks of physical therapy will help heal, for example. I don’t always experience pain in the same spot or in the same way. Some days are better than others. And perhaps most “challenging” is the reality —I will not get better.

Over the years, I have observed doctors and physical therapists become “frustrated” with me — through no fault of my own. The fact is I don’t have an easy-to-understand or easy-to-treat diagnosis. I don’t have a chronic illness that has a well-established prognosis. 

I get it. But that’s all out of my control. 

The goal, as I have told both Dr. P and C, is to work on strengthening my left leg and to maintain that strength as much as I can. Because ultimately I am trying to remain as mobile and independent as I can, for as long as I can.

It isn’t easy. 

But I’m working hard at it.