My Mind Is Full

I had a “difficult” doctor’s appointment last week. 

Actually, I’m not sure difficult is the right word. 

Let me set the stage:

This was my three-month check-in. Basically, because of the medications I take, I need blood drawn every few months. Though I had a 9:00 am appointment, with an 8:45 check-in, my rheumatologist was running late. 

The doctor asked some general questions, but I had come in with a list of concerns and some questions of my own. 

I told my doctor about my fatigue, about waking up feeling unrested regardless of what time I go to sleep and how many wake-ups I have each night. He told me to go to bed earlier and to keep the same sleep schedule seven days a week. I told him neither one was going to happen. (Why wake up at 6:00 am on a Sunday when we have nowhere we need to be at a specific time?)

I told my doctor about the pain. The pain that I carry around every single day. The pain that slows me down, weighs me down, and often makes me feel like I’ve got a wad of gum stuck to the bottom of my shoe, making it difficult for me to walk as effortlessly or as quickly as I would like. 

I also told my doctor about my physical therapy and the progress my physical therapist says I’m making. 

“He says my endurance has improved since we’ve been working together,” I told my rheumatologist. 

“I go for a daily walk, and I use my pedal machine twice a day now,” I said proudly.

“What are you doing while you’re pedaling?” he asked.

“I read, usually. But sometimes I listen to a podcast or watch something on YouTube,” I said.

“You need to stop multi-tasking,” he said. (You may remember my blog post from January, when I wrote about my doctor’s appointment then and Dr. P’s unhelpful suggestions.)

“You need to really focus in on your leg,” he continued. 

I looked at him. Bit my tongue behind my mask. 

He continued, speaking of the increased benefits I would experience if only I would do less, if only I would really “zero in” on my knee and my calf. 

“I think most families multi-task. I don’t know how to get through my day without multi-tasking,” I said.

I went on. “When I go for my walks, I’m not listening to anything. No AirPods in my ears. I’m just walking and staying focused on my surroundings. But at home, I feel safe in reading or listening or watching something while I pedal,” I said.

“You’re not getting the full benefits you could be getting when you do that,” he said.

“Actually, my physical therapist always talks with me when I’m on the treadmill. He said it helps to be distracted, it makes the time go by faster,” I said.

I tried again. “I am in some level of pain every day, all day. I don’t need to be any more focused in on the pain. In fact, I need a break from it. Reading a book gives me a temporary escape,” I explained.

Ultimately it didn’t matter what I said. Dr. P might be pleasant enough, asking about my family, wishing me a good holiday season. But the fact of the matter is he doesn’t get it. Because he’s not living with pain like I am. 

The appointment left me feeling dismissed and blamed. Like the reason I feel as lousy as I do is because I refuse to go to bed at 9:00 pm, or wake up at 6:00 am, or stop reading my novel while pedaling for nine minutes at a time. 

Even if I did those things, he and I both know my pain wouldn’t magically disappear. 

Daily pain is a fact of life for me. No need to concentrate on that sad fact any more than I already do.

To my chronic illness friends – have any of you had a similar experience? Are your doctors talking to you about multitasking and/or mindfulness? Feel free to share in the comments.

As a side note — the appointment made me think back to an essay I wrote several years ago titled, “This Is What ‘Mindfulness’ Looks Like To Me.” I encourage you to check it out. I’d love to know your thoughts about mindfulness.

 

It’s Not the Final Answer

“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.

Maybe Daring to Be Different Isn’t Always a Good Thing

Painting your hand is just one way to show support of Rare Disease Day

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.  

Weird Wendy

I am Wendy.  Woman, wife, writer.

I am, in fact, a woman of many “W’s.”

Depending on who you ask and how they feel about me, I may be described (to varying degrees) as watchful, wise, wacky, warmhearted, witty, wonderful.

Ask my rheumatologist, though, and he’ll tell you I’m weird.

To get the full story, click here to read my personal essay, “The Hard Realities I’ve Faced After My Doctor Told Me, ‘You’re Just Weird’,” which was recently published at The Mighty.