Mochas, Candles, and Pain

What they saw?

A regular customer. The woman who always orders a small mocha — hot (if it’s cold outside) or blended (if it’s hot outside).

What they didn’t see?

Me, carefully holding my cafe mocha, slowly walking back to my car, thankful that my sunglasses covered my teary-eyes. 

Because I hurt. And because I was sad that I hurt this much. Again. 

I had woken up that morning after having a fitful night’s sleep, filled with strange dreams. 

I dreamed I was telling someone (not sure who, in my dream I didn’t actually see anyone else) that my husband and I met in high school (true) and were high school sweethearts (not true — we were classmates in the same English class junior year). I told this invisible person that my husband and I have been married twenty-three years (true).

I also dreamed that I was doing some physical therapy. I had to sit in some sort of chair and use my legs to push the chair back. But there was resistance, which made pushing the chair difficult. When I woke up, my legs felt like they had gone through a workout. And in the midst of all that, I saw a monster truck. (I told you — strange dreams.)

After taking my son to school, I went to Trader Joe’s. The benefit of going on a weekday, shortly after 8 am, is it’s a whole lot less crowded. Fewer people means shorter lines, but also less exposure to any germs (even though I continue to double mask when shopping). But the disadvantage of going to Trader Joe’s on a weekday, shortly after 8 am, is that I don’t have anyone to help me shop, or load the car, or bring the bags into the house, or put everything away.

Which means I was hurting and feeling kind of down and that’s when I decided to head to our neighborhood cafe and get a mocha to bring home while I wrote. 

The mocha didn’t lessen my pain. Neither did the scented candle I lit (Black Cherry Merlot from Bath and Body Works) or the flowers I had bought at Trader Joe’s. 

There’s really only so much I can do in terms of managing my pain. 

So in the absence of true relief, I try to pay attention to the “little things,” the things that bring me joy, or peace, or comfort. 

Readers, what “little things” bring you joy, peace, or comfort? 

Idiopathic

Add idiopathic to the list.

The list of words doctors and nurses have used to define me and my health.

Idiopathic is a new one.I give the doctor bonus points for using a synonym, and one that is much more professional-sounding than the other words I usually get:

Weird.  (You can read a blog post from 2019 titled “Stop Calling Me Weird.”)

Unusual.

Mysterious.

Atypical.

Strange. (Click here to read my blog post from 2020 titled “Weird? Strange? No. It’s My Reality”)

Unique.

At last week’s appointment, the doctor told me the new symptom we were concerned about, the reason behind the additional lab tests, could very well wind up being idiopathic.

We’ll see. We’re waiting for additional lab results. 

And therein lies one of the great dilemmas I live with — do I want “something” to show up on a test? Something that might shed some light on why my body is behaving the way it is. A surefire sign that would explain why something is happening within my body and how we best go about treating it. 

Or, would I rather be told the tests were inconclusive? Indeterminate? Ambiguous? Unresolved?

Because I’ve heard those words, too. That just means nothing of red-flag magnitude showed up on my tests, which rules out quite a bit. However, it does not provide my doctors and me with any information about where we go from here. 

And therein lies the big conundrum in my life with a chronic illness. 

(Another word a doctor has used in the past.)

Mr. Perfect on Paper

There aren’t many books written by an author who has earned a daytime Emmy, “and spent five years in rabbinical school before her chronic illness forced her to withdraw.” 

That author is Jean Meltzer.

(You might remember I raved about Ms. Meltzer’s first novel, The Matzah Ball, in a blog post from several months ago. Click here if you missed it.)

And as was the case in her first novel, Ms. Meltzer’s second book also features a main character who is a Jewish woman living with an invisible chronic illness. 

The book is Mr. Perfect on Paper. The character is Dara Rabinowtiz.  

Mr. Perfect on Paper was such an enjoyable read. Smart, funny, heartfelt. Plus, it gave readers a chance to learn about Jewish holidays in an easy-to-understand manner. Most of all, it gave us characters we cared about.

Here are a few of the passages I marked during my reading:

“He beamed as he entered, a bounce in his step, offering a hearty good morning to each person he passed. He was a champ at this. Faking it. Looking happy. Smiling through whatever pain was threatening to drown him.”

“There were days when Dara was so exhausted from her struggles that she could barely find the courage to get out of bed. It was then that her mother would show up, standing over her — and sometimes tearing off her covers — demanding that she fight. Fight, Dara. Her mother would repeat it like a mantra on her bad days. You’re allowed to be afraid, you’re allowed to be anxious, but you have to fight.” 

“There isn’t one way to be Jewish,” she said, finally. “Some people are very observant. Some people aren’t. Some people fall in the middle of the spectrum, or have different philosophies behind the reasons for their observance. Some people don’t do anything. When two Jews marry, they have to negotiate these religious choices. For example, will they keep a kosher home? Will they observe Shabbat? Will you cover your hair, or go to mikvah? Those are some of the big ones…”

“But,” Dara said thoughtfully, “you learn to live with it. The sadness never goes away. Maybe it never gets smaller, either. But after a time, you learn to hold both. You learn that joy still exists … there’s still laughter, and falling in love, and —“ she smiled, glancing down at the crumbs of her pizza “—there’s still jalapeño-and-pineapple pizza. You learn that good things still happen. You meet someone. You fall in love. Maybe you even get married. And when you walk down that aisle, you hold both. You hold the joy of the moment alongside your sadness for the one who can’t be there.” 

“But what I learned from this journey, from finding my real-life Mr. Perfect on Paper, is that love isn’t something that can be quantified on a list. Love is messy. And terrifying. It shows up when you least expect it, and complicates your life in every way. But it’s also … safe. And comforting. It allows you to be yourself completely, without judgment or fear, and it feels right. I don’t know how something so incredibly scary can also feel right, but I need to give this inkling in my heart —in my soul—a chance.”

“I know you think…because you have anxiety, that you’re not brave. But that’s not true. I’ve been thinking about it a lot, actually, and here’s what I want to tell you. Courage ins’t about jumping out of airplanes or building businesses from scratch. Real courage is showing up, even when you’re afraid. Real courage is putting yourself out there, even when you fail — especially when you fail. Courage is saying, this is who I am, standing up, allowing yourself to be vulnerable. And you are brave, Dara. You’re the bravest person I have ever met.”

Pain Awareness Month

(Just a few of my son’s cubes)

September is Pain Awareness Month.

Which kind of feels like a joke. Because, I have a close-and-personal relationship with pain. I am very aware of pain — every month of the year. 

Pain is a part of me — night and day. Weekdays and weekends. It doesn’t even take major holidays off. 

My pain is commanding and assertive. It does what it wants to do, and it doesn’t care if I’m in the privacy of my home or walking to my neighborhood Coffee Bean. 

Or at my son’s Cubing Competition. 

About a year ago, my son became interested in Rubik’s Cubes after watching one of his very good friends solve them. (Who knew there were so many cubes? Some of them aren’t even cube shaped!) This past Saturday, my son participated in his first Cubing Competition which involved five different events. 

The competition was held in a high school gymnasium about an hour away from home. Our family didn’t know exactly what to expect, because since this was our son’s first experience competing, it was the first time my husband and I were spectators at such an event.

There’s a lot of sitting around — on bleachers.

Then there’s a lot of standing and moving around so we could get a good view of our son cubing which would then make for good photos and good videos. 

And that’s when my pain decided to make a grand entrance. During one round, and thankfully my son wasn’t competing at the time, I felt like my leg was about to buckle under me. A strong muscle cramp gripped my left thigh. 

This was new for me. Usually cramps hit me in my left calf. And usually they happen at home. Just a few weeks ago, I had a cramp in my calf during my virtual appointment with my therapist. Sometimes cramps wake me from sleep. At home, I can cry and bang the mattress, bite on the blanket in an attempt not to wake my son. 

But we were at a high school gymnasium, with about 100 participants and their families. My husband and I went outside and found a bench. I couldn’t sit without excruciating pain, I couldn’t stand and stretch without feeling like I was going to fall. I couldn’t walk it off or massage it away. And I couldn’t cry or make a scene, because there were a few other parents outside on their phones and dealing with younger siblings. And, most importantly, my son was inside waiting for us. 

I was very aware of the time, knowing my son’s next round was happening very soon, and I certainly wasn’t going to miss it because of a cramp. 

My husband and I went back inside. Underneath my double masks, I pursed my lips. I tried to take deep breaths and tried to calm myself down. 

I tried to focus on the moment and watch nearby competitors as my son waited his turn. But I had a hard time standing and had to lean heavily on my husband. 

I was aware of my pain. Very aware of my pain. 

And that’s probably one of the hardest things about my Undifferentiated Connective Tissue Disease. The randomness of it. The fact that I never quite know how I’ll be feeling from one day to another. Or in Saturday’s case, from one hour to another. 

As my therapist and I have talked about, the only thing predictable about my autoimmune disease is its unpredictability. 

In my life, Every Month is Pain Awareness Month.

Books, Boys, and Bodies

The view from our balcony. I admit – I didn’t get a whole lot of writing done.

For this weekly blog of mine, I generally write about one of three B’s in my life:

–  Books (because a writer must also be a reader)

–  Boys (mainly my fourteen-year-old son)

–  Bodies (living with my autoimmune disease, an invisible disability).

Last week, it occurred to me just how much those three are often connected and inter-related.

Let me explain.

Last week at this time, my family and I were in Maui. 

This was a big trip for us. The last time my husband and I were in Maui was for our honeymoon, twenty-three years ago. Our son had never flown before, and I hadn’t flown since before my son was born. Which means I hadn’t flown since my UCTD (undifferentiated connective tissue disease) diagnosis. Add in my worries about COVID, and you can understand why I went into this trip with a great deal of anxiety. At the same time, I was determined to experience the trip as fully as I could. 

Which is where the B’s come into play.

In terms of books, I brought one book and one magazine with me. I didn’t read nearly as much as I thought I would. There were no days spent lounging by the pool. There was too much to see and do — including a visit to the Barnes and Noble in Maui.

When it comes to boys, my son was much more adventurous than my husband. During the planning stage of this trip, my son had told us he hoped we could go parasailing and ziplining in Maui. I had been parasailing once before, many years ago, on Catalina Island. That time, my husband was an observer, not a participant. And he opted for the same role this time around.

It was because of my son that I pushed my body as much as I did. 

Parasailing? Me? Yes, definitely. The parasailing itself didn’t cause additional pain in my leg. The only pain and discomfort came from getting in and out of the boat. But, it was a small price to pay for the incredible experience, as my son and I rode tandem and admired Maui’s beauty from such a unique perspective.

Ziplining? Me? Yes, I think so. Neither one of us had ever gone ziplining before. We signed up for an eight-line zipline adventure that promised to be something neither one of us would forget. I worried that I wouldn’t pass the knee and ankle check that takes place before we’re loaded into the van and driven into the hills. (On my waiver, I did disclose the information about my illness, and I did pass the knee and ankle check. The woman who observed me and gave me the final clearance reminded me to just go slow and hold your son’s hand to help you.) The actual ziplining wasn’t nearly as hard on my body as the hiking and walking from one spot to another. And I admit, I did slip and fall during one of our walks — thankfully, no injuries or scrapes. 

What an awe-inspiring experience we had. Views of the Pacific Ocean if we looked one way, views of the West Maui Mountains when we looked the other way. 

I felt strong, something I don’t always feel. 

Because on this same trip, I did something I had never done before. I used a wheelchair. A very good friend of mine had encouraged me to take advantage of the wheelchairs available at airports. Don’t waste your legs standing in line and walking through an airport, she said. And she was right. But it still didn’t make it any easier for me to ask for that accommodation. In fact, I waited for the day before our trip to submit the request.

We did a lot of walking during our trip. (Sand is so hard to walk on!) We did some hiking, too. There was so much to see (chickens and roosters in parking lots, waterfalls, flowers), so much to admire (sunsets, rainbows, puffy clouds), and so much to be grateful for (our trip, our safety, all that my body can still do).

And we each came home with one more book than we left with.

Words Have Power

Words are powerful. What you say, and how you say it, have lingering effects. And I’m not just talking about words spoken to someone else. Also included in this list are the words we speak out loud to ourselves (I’m not the only one who talks to herself, am I?) and the words we think to ourselves. 

We know this. 

But sometimes, something happens that serves as a flashing-light reminder of just how true that is.

Last week, I had two such incidents.

My neighbor and I were chatting and catching up. She’s almost forty years older than me and was talking about some new pain she’s experiencing in her lower back/side area. Thankfully, all x-rays came back fine, no problems identified. She found herself in a situation that I know all too well. Tests are negative, big problems ruled out, but still no answers about what’s causing the pain and no clear direction given on how to alleviate the pain. 

“I tell you, living with chronic pain is no fun,” she said. 

I know.

“I don’t know how you do it,” she said.

I bit my tongue.

She went on a bit, describing the discomfort, and again said, “I really don’t know how you do it.”

I looked at her and said, “I don’t have a choice.”

I do it, I live with chronic pain, because I have to. Because there is no alternative.

And though not her intention at all, and though I’m not fully sure why, her words got under my skin and bothered me. 

The second conversation occurred the next day, during a telehealth appointment with my rheumatologist. Near the end of our conversation, I asked her about a trip my family and I are thinking of taking. 

“We’re thinking about going to Hawaii,” I said. “But I haven’t flown since before my son was born, and he’s 14. I haven’t flown since I have this condition. And I’m worried, because of the blood clot I had after my biopsy.”

(In case you missed it, I had a second biopsy in September 2020. A “routine” procedure that was supposed to provide some answers to my rheumatology team. No answers, and I developed a “very rare” blood clot in my left calf. You can read about it here.)

She answered my questions, told me some things I could do before, during, and after flying. And then she said something that has been on repeat in my head since she said it.

“Oh, go, you need to have some fun.”

And that advice, given with a smile through a screen, was encouragement and validation I hadn’t realized I needed. 

It’s Stressful

There’s been a lot going on these last few weeks. And I’m not even talking about the big scary stuff such as the heartbreaking devastation in Ukraine. 

I’m talking about things in my own little corner of the world. 

I had some medical tests done recently. Here’s the thing about that — it’s stressful. It’s stressful knowing you need the tests in the first place, it’s stressful waiting for the tests (because for me, it took several weeks to get the appointment), and then it’s stressful waiting for the results.

I was very glass-is-half-empty about it.

I was sure these tests would not come back with good news.

I tried to explain my reasoning to my therapist. 

For years now, I’ve had many symptoms that aren’t quite “right.” Not red-flag wrong, but enough to cause a doctor to pause and order more tests, just to be sure, just to rule out something else.

For years now, those tests have all come back fine, or at least, okay-enough. But as I told my therapist, I feel like there are only so many “get out of jail free” cards a person gets. I felt I must have used up my limit by now.

There’s the other part of me that feels as if I’m waiting to be further punished. As if some higher force is looking down at me thinking, “Ha. You’re talking about pain in your leg. You’re saying it’s harder to sit, to stand, to walk, to drive. You think this is bad now. I’ll show you bad.”

But then a friend of mine gave me another way to look at it. 

She told me that the higher power up there figures I have enough going on. This higher power knows I’m dealing with crap (aka pain and the complications that come with chronic pain) every day. So they’re not going to give me something else to deal with. My plate is already full.  

My friend used a few curse words in our conversation that I will leave out of this blog, but she made me laugh, and helped me see things in an entirely different way. 

It’s true. I am dealing with “crap” every single day. Some degree of pain. There are medications to take. Medications to try. Appointments, consultations, labs, scans. Heat, ice. Rest, exercise. It doesn’t stop.

And in case you were wondering, my tests came back with good news. 

13 Ways Writing Is Easier Than My Autoimmune Disease

It all started from a 5-minute writing exercise. I used a prompt from Barbara Abercrombie’s A Year of Writing Dangerously: 365 Days of Inspiration and Encouragement (great book!), and when my timer went off five minutes later, I knew I had written the beginning of something. That first draft went through some significant changes.

13 Ways Writing Is Easier Than My Autoimmune Disease is the final result. 

I’m happy to say it was recently published at The Mighty. You can click here to read the essay in its entirety.

4 Reasons Why Chronic Pain Sucks

(This magnet hangs on a board near my desk.)

I’ve been told I have a positive attitude. I’ve been praised for not letting my autoimmune disease take control of my life.

I try. I try very hard to look at the bright side, to acknowledge that things could always be worse, to do the things I want to do pain or no pain.

But, in all honesty, the last couple of weeks have been really bad. Like trying-not-to-cry-as-I-walk-back-to-the-car-after-taking-my-son-to-school bad. 

In our home, we don’t curse. Even words that other families might use, like “sucks,” isn’t a word we use. Except, occasionally. 

Today is one of those occasions.

Chronic illness sucks. Chronic illness that causes chronic pain really sucks. There’s no rhyme or reason to it. For example:

  1. Sleep does not equal less pain.  I rarely sleep through the night. If I only wake up once, that’s a good night’s sleep for me. But the other night I did something I hadn’t done in a long time — I slept through the night. My body had a full night of uninterrupted sleep. I woke up, amazed to realize it was morning. I got out of bed and felt … lousy. Terrible pain. From the moment I woke up until I went to bed again that night.
  2. Muscle spasms worsen everything.  I was sitting at my desk, with the dull pain I’m used to in my left leg. As my son was showering, my left calf began to twitch. And not in its usual twitching spot — more on the inside of my leg. This was the outer side of my calf. My muscle twitched, and I tried to rub my leg. My muscle continued twitching, and I bit my finger. It finally stopped twitching and I had a really hard time getting up from my desk chair. I had an even harder time stepping into my own shower. My leg was tight when I went to bed that night and no different when I woke up with the alarm the next morning.
  3. Rest doesn’t automatically mean relief.  I have been making an effort to take time for myself. To rest. Not in the form of a nap, but sitting outside on our patio, reading a book. I usually spend my days taking care of household chores, dealing with appointments, and writing. But I have been making a conscious decision to set aside some time during the week — when my husband is at work and my son is at school — just for me. To sit in one of my favorite places, doing one of my favorite things. I hoped to notice an improvement — an increase in relaxation, a decrease in discomfort. Nope. Maybe it’s too soon. Maybe I need to do this more often, more consistently. In any event, I got in some extra reading time. 
  4. Pain levels fluctuate.  When I spoke to my husband on one of his breaks, my pain wasn’t bad. It felt so good to be able to say that to him. By the time he called on his next break, about three hours later, it was bad. Pain-pill bad. I hadn’t done anything physically strenuous or anything I could see as a possible trigger (like gardening or standing on a step-stool to reach something on a high shelf in the closet). The pain shifted — from not bad to real bad. And for no apparent reason. 

What Doesn’t Kill You

Once in a while you come across a book and you suddenly have this urge to buy cartons and cartons of this book, plant yourself on a busy corner, and pass them out to everyone who walks by.

This is how I feel about Tessa Miller’s What Doesn’t Kill You: A Life with Chronic Illness – Lessons from a Body in Revolt.

While our chronic illnesses and experiences are vastly different, the book is so very relatable. The bottom line is everyone living with a chronic illness and everyone who knows someone living with a chronic illness, should read this book. 

I don’t remember how I first learned about this book. But I do know that this is one of the few books I have bought sight unseen. I bought it based on what I read about it. I bought it because I had a desire to read something by someone who “gets it.”

And Tessa Miller gets it:

“I needed a book written by someone who exists in that foggy space between the common cold and terminal cancer, where illness doesn’t go away but won’t kill you. I needed someone who lives every single day with illness to tell me that 1) I wasn’t alone and 2) my life was going to change in unexpected, difficult, and surprisingly beautiful ways.”

“I didn’t know then that my life had changed forever. That I’d be able to divide my experiences into before I got sick and after I got sick.”

“I became a professional patient, and a good one. I learned that bodies can be inexplicably resilient and curiously fragile. I would never get better, and that would change everything: the way I think about my body, my health, my relationships, my work, and my life. When things get rough, people like to say, ‘this too shall pass.’ But what happens when ‘this’ never goes away?”

“And they shouldn’t doubt the level of pain you’re in just because you’re not writhing around on the floor; chronic illness patients learn to live with a shocking amount of physical discomfort and often go about it looking natural.”

“But grieving yourself when you’re diagnosed with a chronic illness is different. The emotions might be similar to those felt when mourning a loved one—anger, sadness, numbness, disconnection from reality —but the process of ‘moving on’ is more complicated. Whereas the loss of a loved one has a sense of finality, the loss of self from chronic illness can feel never-ending.”

“See, chronically ill people grieve two versions of ourselves: the people we were before we got sick and the future, healthy versions that don’t exist (or, at least, look much different from what we’d imagined). There’s no guidebook for this kind of ongoing self-loss. No Hallmark card that says, ‘Sorry you’ll never be yourself again.’ “

“Your body and your brain are not two separate entities. They’re a partnership. What happens to your body affects your brain, and what happens to your brain affects your body. Taking care of your brain’s health should be no less of a priority than taking care of your body.”

“ ‘God doesn’t give you more than you can handle,’ as the saying goes. But that isn’t the way it works at all. Some people have more suffering, and some have less, and there’s no rhyme or reason why. Bad stuff happens to good people with no other explanation than it just happens. Little babies die suddenly and horrible old billionaires live to see 105 and decent people get sick forever. Shit will never make sense.”

“And despite what the writing of a memoir signals, I don’t love to talk about myself IRL; the page makes me appear much braver than I am. But despite the fear, I keep sharing my stories through writing because that’s how humans connect and stay alive. Stories give us empathy. They make us strong. They offer perspective.”