“After a year and a half of talking with one doctor after another, it was Dr. W, a rheumatologist, who explained my mystery illness.
‘It’s an autoimmune disease called Undifferentiated Connective Tissue Disease. UCTD,’ he told us.
My husband and I had no idea what that meant except for one thing. My gut instinct told me that not knowing those letters, not immediately recognizing the name Undifferentiated Connective Tissue Disease, was a good thing. If UCTD was truly bad, it would have been a familiar term. A term you hear about a lot in relation to walk-a-thons and fundraisers. Multiple sclerosis. Muscular dystrophy. Even if I didn’t know the specifics of those illnesses, I knew their names. I knew they were complicated. UCTD sounded okay.”
The paragraphs above are from my personal essay, It’s Not the Final Answer. I’m pleased to share that my essay was selected for publication in Please See Me, Issue #12: Diagnosis. You can read the essay in its entirety by clicking here.
I’ve read that sentence before — in other books, in other posts. For some reason, though, when I read it this time, I really lingered on that page. I just couldn’t stop thinking of those words and what they mean. Maybe it’s because we’re in this in-between time of reflecting on a year that is rapidly coming to an end while daring to look ahead with hope to the new year.
“My illness does not define me.”
It’s true. I don’t think anyone who knows me well would use words like ill or disabled to describe me. And that’s probably because I spend an awful lot of energy trying to act like my illness is not front and center in my life.
But, I don’t think that’s particularly helpful either. I try to ignore my autoimmune disease, push it aside and out of the way. But it’s still there, demanding attention, and though I don’t often admit it, it’s also demanding compassion.
I’ve never written that before.
Probably because, in all honesty, that’s the part I’m just starting to become aware of.
“How long has your leg been hurting?” the technician asked me.
“Years,” I told her.
“No, seriously,” she said.
“Yes, seriously. My calf for over ten years. My thigh for a few years now. The last couple of years really bad,” I said.
The technician continued walking down the hallway and didn’t ask any other questions.
I didn’t know how else to answer her. I wasn’t getting an MRI because of an isolated incident, like a sports injury or something along those lines. I was getting an MRI because the pain in my left leg is no longer limited to my calf. The pain now extends to my left thigh.
If you follow me on Instagram (@wendykennar), you may remember I posted a picture from an MRI a little more than a month ago. That MRI only looked at my left calf and knee. Apparently, my calf looked okay (whatever that means), but my knee is in bad shape.
The scan hadn’t looked at my thigh, though the pain was there as well. At my follow-up appointment, my rheumatologist did some strength tests on my thigh. She pressed and squeezed. Everything hurt, and the left thigh is definitely not as strong as the right. This, apparently, was the evidence she needed to order the MRI of my femur.
It’s not easy living with a chronic illness; a chronic illness that causes chronic pain. And it’s really not easy to advocate for myself. But that’s what I had to do in the form of several emails before the appointment with my doctor. I had to keep asking for this second MRI; after, of course, I politely expressed my displeasure that the first MRI hadn’t included my entire left leg.
My pain has intensified and spread. I told my doctor I was experiencing more difficulty in my daily tasks —getting in and out of the car, climbing the stairs at home, making dinner. I was struggling just to make it through the day.
I am taking more medication than ever before and not feeling any better.
I’m not one to complain. In fact, I have often been described as tough and stoic. But really, I don’t know how much longer I can put on the brave face. I hurt. And it’s utterly exhausting to hurt this much and not feel like anyone is doing anything to help me feel better.
And now all I can do is wait. Wait to see if the MRI provides us with any answers about why the pain has worsened and spread. If so, this might mean a change in my treatment plan. Or, as tends to happen with me and medical tests, results come back in that “okay-enough” gray area. And then we’re left with trying to make guesses about where we go from here and what we try next.
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?
Strange. (Click here to read my blog post from 2020 titled “Weird? Strange? No. It’s My Reality”)
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.
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.
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 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.
A road trip to one of our favorite spots on the California coast.
4 days, 3 nights.
And pain. Lots and lots of pain.
I started the week with high hopes and lots of gratitude. Last year’s spring break was spent at home. This year, fully vaccinated and boosted, it was possible for us to spend time in one of my favorite places — Cambria, California.
Being in Cambria is good for my soul. Away from my daily responsibilities, away from the noise of the big city (no helicopters, no sirens, no car alarms), I feel calm. Serene.
The whole time we were there, I kept waiting for the good vibes to kick in. I was waiting for the pain to decrease and fade into the background all together.
It never happened.
By the time we got home, I was in agony. My legs were beyond hurting. My legs felt weak, as if any moment I might topple over or my knees might suddenly decide to buckle.
Almost 500 miles roundtrip with me as the driver.
Walks and hikes, up to 5 miles each day.
Back at home, back to the responsibilities of bills, laundry, and watering my plants, I felt so disappointed.
Why can’t my body just work the way I want it to?
That question came to mind on our first night home, as I stood under our shower, thankful I no longer had to make due with the barely-there water pressure of our hotel.
A few days later, the answer came to me.
My body did do everything I wanted it to do.
I planned and packed.
I drove and sang. (It doesn’t get any better than driving along a stretch of the 101 while my husband, my fourteen-year-old son, and I all sang along to Hey Jude.)
I walked and watched. (We saw elephant seals up close and dolphins from a distance.)
My body did do everything I wanted it to do.
I have to keep repeating that to myself.
It might not have been easy or pain-free, and it might never again be. That’s the big difference when you live with a chronic illness and chronic pain.
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.