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.
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.
10 years ago this month, I woke up on a Sunday morning and couldn’t stand. For a few days, my left calf had felt sore and tight – the leftover feeling you get after a muscle cramp.
But on this particular Sunday morning, my calf wasn’t just sore and tight. It was red. Elmo-red. And swollen. And I couldn’t stand up.
I knew something was wrong when the emergency room nurse admitted me as quickly as she did.
My prior emergency room experience was more than five years earlier when I cut the palm of my left hand while trying to cut open an avocado. I remember sitting in the waiting area that evening, my arm raised, my hand wrapped in dishtowels waiting to see a doctor. Waiting for stitches.
This time I was immediately admitted.
I knew that wasn’t a good sign.
But never could I have imagined that my left calf’s “issues” weren’t a temporary problem. Never could I have imagined that Sunday in July was just the beginning.
And never could I have imagined that my life would forever be changed.
“Even though my disease has been a part of my life for several years now, I don’t feel as if I’ve reached a level of total acceptance and understanding. I am more and more convinced that living with a chronic illness is synonymous with living a life full of contradictions.”
One of my bad habits is collecting paper – articles, advertisements, clippings. I cut them out, sometimes tear them out, and stash them away – in folders, in a wicker basket on the shelf under my coffee table, in an accordion folder.
One of my projects in recent weeks has been to sort through these papers, to re-read the articles and decide if I want to keep them or recycle them.
That’s how I came upon this ad for Pandora jewelry.
On eight of my ten fingers, I wear nine rings. And while only one of my rings is a Pandora ring, I love the ad.
Because my rings are an extension of my personality.
To quote the ad:
“Your rings aren’t just rings. They’re a punch of style. A bold expression of you-ness.”
Which is why it was devastating when I could no longer wear my rings.
You can click here to read a personal essay (“How My Identity Has Been Affectedby the Changes in My Hands Due to Illness”) I wrote a few years ago. My autoimmune disease may manifest itself as pain and weakness in my legs, but that doesn’t mean my hands, and my rings, haven’t also been affected.
Readers, I’m curious. Do you wear any jewelry that you consider to be an “expression of you-ness”? Feel free to share in the comments section.
Lately I’ve been thinking about this invisible disability of mine that has changed my world (and by extension, my family’s world) and this coronavirus that has changed the entire world.
My autoimmune disease is invisible. Just by looking at me you couldn’t tell I have a blue handicap parking placard in my car’s glove compartment.
When I was still visiting doctors and specialists trying to figure out what was going on with my legs (it took over a year to receive a diagnosis), my biggest concern was the possibility I may have passed on this mystery illness to my son. Ryan was two years old when I first became ill. He was described, by some, as a “late walker.” I was experiencing pain and inflammation in my legs. Was there a connection?
Thankfully, my autoimmune disease is mine; it is limited to me. There is no family history, and there is no fear that I have passed this on to my now twelve-year-old son.
COVID-19 doesn’t work that way. It’s a scary, invisible, powerful force lurking just outside our home. On things we could touch. On air we could breathe.
The most scary thing to me, in regards to this coronavirus, is that it is possible to be infected and yet be asymptomatic.
My autoimmune disease isn’t fatal.
But COVID-19 can be.
Wear your masks. Keep your distance. Wash your hands.
Please, continue to be safe and careful out there.
I first became ill when Ryan was just two years old. He has grown up knowing me like “this.” “This” meaning pain in my legs, prescription bottles on the counter, doctors appointments written on the kitchen calendar.
“It breaks my heart that Ryan has learned a powerful lesson at such a young age. People get sick. All different kinds of sick. Through no fault of their own. And sometimes there’s nothing you can do to make the illness go away. The only thing you can do is learn to live with it as best you can.
But there is a flip side to all this.
There has to be.”
Those lines were taken from one of my personal essays, “Because of Ryan” which was recently included in the fourth issue of Please See Me.
How would you complete this prompt:“When I look in the mirror, I see…”?
My latest publication is a personal essay answering that question. As I wrote in my short biography for Ailment – Chronicles of Narrative Illness, “My personal essay describes all the different “Wendy’s” I see when I look in the mirror. Living with an invisible disability, an autoimmune disease called Undifferentiated Connective Tissue Disease, has changed the way I look at myself and changed the way I see myself.”
“The battles that count aren’t the ones for gold medals.
The struggles within yourself –
the invisible, inevitable battles inside all of us –
that’s where it’s at.”
– Jesse Owens
I had an experience that made me think of this quote.
Many times over the years I’ve been told I don’t look sick.
And I don’t feel sick.
I think of sick as throwing up, coughing, fever. I’m not sick. (Thankfully).
I am uncomfortable. In pain.
And the worst part is when the pain just randomly hits out of nowhere. Sometimes the pain makes sense. I spend 30 minutes pulling weeds and gardening, my legs hurt. My son and I go shopping at Target (such a huge store), and I’m hurting.
But a couple of weeks ago, my husband and I went out to lunch. I was ok. We were walking to our car in the adjoining parking lot, and all of a sudden I clutched my husband’s hand. An intense pain gripped my left thigh. We found a ledge to sit down on. And while I tried to take deep breaths, I quietly cried behind my sunglasses.
I cried because of the pain.
And, I cried because I was out with my husband, celebrating his birthday, and I couldn’t even walk to our car.
The pain subsided enough for me to get up and keep walking. But for the rest of the day my thigh hurt. The kind of lingering hurt you get after you’ve clumsily walked into the corner of a table or something.
Except I hadn’t walked into anything. I had simply walked.
Saturday, February 29th is Rare Disease Day. “The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives.”
I became ill in July 2010 but wasn’t diagnosed with Undifferentiated Connective Tissue Disease until November 2011. When my rheumatologist finally put a name to my symptoms, he told me UCTD is rare and that if I wanted to walk around and call it “the Kennar,” I could.
At the time, I joked with my doctor, telling him I had always “dared to be different,” so why should this be any different.
But since that morning, I’ve changed my mind.
I don’t want a rare condition most people have never heard of. I’d much rather live with a more common, even ordinary, chronic medical condition.
A disease doctors understand and can easily treat.
Maybe even a disease with its own awareness month or magnetic ribbon I can attach to my car.