Month: July 2019

10 Tips and Tricks for Parents With Invisible Disabilities

Posted on by Wendy Kennar
Don’t forget to take care of yourself and show yourself some love!

 

I’m the proud mother of an 11-year-old son. I’m quick to boast, and tell you about Ryan’s curiosity (he asked me what the nurse does with his blood after a blood test.  In all my years, I had never thought to wonder). I’m quick to brag about his kind heart (without prompting, the way Ryan holds Grandpa’s hand while walking through a museum, and slows his steps down to match Grandpa’s). I’ll smile and tell you how Ryan loves to dance and sing and is equally entertained by the Beatles, Stevie Wonder, Justin Timberlake, and Prince.

But I’m not as quick to talk about myself. I don’t immediately tell people about my invisible disability, the rare autoimmune disease coursing through my body (and on bad days, I think it’s cursing my body). It’s called Undifferentiated Connective Tissue Disease and has overlapping symptoms of lupus, myositis, and rheumatoid arthritis.

Those words begin an essay recently published at Mother’s Day Magazine.  I have been living with my autoimmune disease for nine years.  There are moments when I think I’ve figured things out, I’ve got a handle on things.  And then there are the moments when I feel so confused, so sad, so frightened, so much pain that I just want to sink to the floor and cry. 

But I can’t.  

Because I have an 11-year-old son who needs to be fed; who needs to be taken to school, the library, and the dentist; who needs me.

So, I have developed a few “tricks and tips” that help me get through the day.  Click here to read “10 Tips and Tricks for Moms Living with Invisible Disabilities.”  (Here’s one I’ll share right now – Eggo Waffles count as dinner.)

 

The Tale of My Healthy Breakup

Posted on by Wendy Kennar
One of my favorite places to walk – Cambria, California.

This week, I have a story to tell you about a failed relationship.

We “were set-up, kinda, sorta like a blind date. Actually, more like when your friend dates somebody and then realizes you should be dating them instead.”

It wasn’t an easy relationship.

“I didn’t want to give up on us.  I wanted to stick it out, because that’s what you do in a long-term relationship.  You don’t walk away the first time things are hard or unpleasant or uncomfortable.  You try to work on it and work it out.  You try again.”

But ultimately I had a “healthy breakup” – from my Fitbit.

For the whole story, click here to be re-directed to The Mighty and read my recently published personal essay “Why I Broke Up With My Fitbit.”

 

Stop Calling Me ‘Weird’

Posted on by Wendy Kennar
Now that’s a weird sight.

What does “weird” mean to you?

I think it’s weird when I walk into Trader Joe’s and find there are no flowers for sale.

I think it’s weird when I’m scanning through the radio stations in the car and hear the same song playing on two different stations at the same time.

You may think it’s weird that I even listen to the radio.

Back in September of 2018, I wrote a blog post after my rheumatologist called me weird.

This week, it’s a blog post about a different doctor but the same adjective.

I met with a doctor specializing in chronic pain management.  I didn’t go into the appointment with very high hopes.  After all the doctors I’ve already met with and all the tests I’ve already had, what could this doctor have to tell me?

Well, she told me that my pain doesn’t follow predictable patterns.

I knew that.

She told me she’s not quite certain what’s going on in my body.

No one really is.

She hypothesized and starting thinking out loud about different tests.  I vetoed the nerve conduction test and electromyography.  I’ve done it twice, and all I can say is it felt like a form of torture.

I stood on my toes.  

I stood back on my heels.

I walked down the hallway.  

I crossed my legs.

The doctor reviewed the results of previous MRIs.

And her conclusion?

I have “weird pain.”

I didn’t agree to a new drug.  I didn’t agree to a test that would involve inserting a needle into my spine.

And I didn’t let the tears flow in that exam room.  

I thanked the doctor for her time, and on the drive home, I cried.

I don’t know why doctors think it’s okay to tell a patient they are weird or their pain is weird.  

I’d like to suggest different adjectives:  Abnormal. Uncommon.  Atypical.  Irregular.

At least those adjectives sound more professional, more clinical in nature.

You can click here to read my personal essay “The Hard Realities I’ve Faced After My Doctor Told Me, ‘You’re Just Weird’.”

 

10 Absolute Promises

Posted on by Wendy Kennar
Ryan, age 3. Safety first. Helmets have always been the rule; even when Ryan first sat on his tricycle in our living room!

“Can you promise me that there won’t be any more?”

That was my son’s question as we got ready for bed last Friday night.  (For my out-of-California readers, we had a couple of big earthquakes here last week.)

As I gave Ryan his nightly hugs and kisses, he asked me to promise him that everything was back to normal.  I couldn’t promise that.  

He asked me to promise him that if there were any after-shocks they would be too small to feel.  I couldn’t promise that.  

But I did promise Ryan the most important thing my husband and I have always promised him – to do everything we can to always keep him healthy and safe.

Throughout the night, I peeked in and watched Ryan sleep.  And I thought about how much of his life, and my life, is out of my control.  

I can’t make promises about earthquakes.  

But, I absolutely can make these promises to my son:

 

1.  I promise to always regard you with a mix of awe and wonder.

2.  I promise to always have chocolate in the house. 

3.  I promise that we will never run out of toilet paper.

4.  I promise that our family will always have money to buy books.

5.  I promise I will always cry at certain parts of certain movies (splash-down in Apollo 13 and the” there’s-no-bathroom-for-me-here” scene in Hidden Figures).

6.  I promise I will always yell at the TV when we watch basketball games.

7.  I promise to always attend your school functions including performances, conferences, and Back-to-School nights.

8.  I promise to always print out pictures, maintain our family photo albums, and periodically update the pictures on our refrigerator.

9.  I promise I will always feel colder than you and will annoy you when I ask you, again, if you’re warm enough.

10.  I promise that long after you’ll probably want them, I will still always have an endless supply of hugs and kisses.

 

How Much Is Too Much?

Posted on by Wendy Kennar
Ryan and I at The Huntington’s Lily Ponds

 

9 years.  

Next week, marks the ninth anniversary of my life with an autoimmune disease.

Although at the time, we didn’t realize we were dealing with a permanent situation.  My left calf was swollen.  We thought a visit to the emergency room would make it somehow become un-swollen, and that would be that.

How wrong we were.

9 years later, a lot has changed.  I’m no longer a classroom teacher.

But the part that hasn’t changed is my desire to be an active, engaged, loving mother.  For me, that means I make chocolate chip cookies for dessert a few times a week.  (Disclaimer – they’re the Pillsbury, pull-apart-and-bake-kind.)  And for me, that means every summer is full of what a friend of mine refers to as “field trips.”

My son and I (sometimes with my husband, sometimes with my dad, and oftentimes just the two of us), venture around the city exploring different venues and museums.

My son graduated from elementary school three weeks ago, and since then we have been to:  the GRAMMY Museum, the Getty Center, the Aquarium of the Pacific, Discovery Cube Los Angeles, miniature golfing, the library, and the beach (twice).  

The one that did me in, that almost brought me to tears (of pain and sadness and frustration) was our visit to The Huntington Library, Art Collections, and Botanical Gardens. 

We hadn’t been there in many years.  So many years, in fact, that Ryan had no memory of having been there before.  My husband, son, and I explored for about two-and-a-half hours.  That’s all my legs could do, and that’s all Ryan could do before his energy decreased and his appetite increased, and he was ready to leave. 

I loved being there.  Marveling at one of my favorite paintings, Pinkie, enjoying the colorful sight of the rose garden, thinking of my pen pal while in the Japanese Garden, smiling as we stood beside the lily ponds.  

But we didn’t see all the Huntington has to offer.  

We couldn’t.

I couldn’t walk any more.  The pain was intense.  My knees felt as if someone had whacked them with hammers.  My legs felt weighted down.  My shoes felt like they had magnets attaching me to the ground, making it hard for me to lift my foot and take a step.  

And yet, I had wanted to go there.

I had wanted our family to have this special day’s experience.

But I felt awful, until I went to sleep that night.

Was I glad I went?  Yes.  

Do I want to go back?  Yes and no.  

How much pain do I put myself in, how much do I push myself to see, to smell, to touch, to hear all that I wish to experience even when I know that it is physically difficult for me to do?

Nine years, and I still don’t have the answer to that question.