10 Tips and Tricks for Parents With Invisible Disabilities

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

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’

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’.”

 

How Much Is Too Much?

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.

 

Just Do It

This past Saturday morning I woke up with a knot in my left leg. 

As the morning went on, the knot untangled itself and pain near my biopsy scar replaced the discomfort of my knot.

It was Saturday.  We didn’t have any particular place to be at any particular time, but this was our family day.  We had plans.  Hanging out on our patio.  A picnic in a nearby park.  An afternoon walk.  And damn it, I wasn’t going to let some pain stop me.  I rarely do.

I can’t control when the pain hits, or where it hits, or how long the pain lasts.  Certain activities (playing handball with my son, for example) are triggers.  Other activities (weekly grocery shopping, for instance) sometimes aggravate my pain but not always.  And rest doesn’t always help.

Besides, this was Saturday.  Our long-awaited family day.  Our we-made-it-through-the-week, the-weather-is-beautiful, let’s-enjoy-the-day Saturday.  

And I wasn’t going to miss it.

During our picnic lunch, I struggled to find a comfortable way to sit.  Cross-legged worked for a bit.  Stretching my legs straight out in front worked for a bit.  No position was truly comfortable, but I tried to focus on what was most important.  My son’s smile.  The three of us playing Uno.  The light coming through the leaves on the tree nearby.  The sound of the park’s fountain.

While we sat and ate and talked, my husband told me I could do my own version of a Nike commercial.  Not to advertise shoes or athletic prowess, but my embodiment of their “Just Do It” theme.  

Because that’s what I do each day.  I do what needs to be done, regardless of how I feel.

Back in my college days, I often wore a “Just Do It” cap at home during particularly stressful times.  Studying for finals.  Assembling a portfolio for an art class I didn’t want to take.  Staying up late to complete my reading about ancient Indian history.   It was my “uniform,” my buckle-down-and-do-this attire.

College wasn’t easy in any sense.  My husband and I moved in together and got married while I was in college.  I worked throughout my college years.  And for most of my college years, I relied on public transportation.  (Six buses a day, 3 1/2 to 4 hours a day, for the round-trip commute from our apartment in L.A. to California State University Northridge).

But I did it.  I took care of what needed to be done.  And I became the first in my family to earn a college degree.

That Just Do It cap now hangs in my writing room.  I haven’t worn it in years.  I’m not sure exactly when I stopped wearing it or why.  

Maybe it’s because I always feel like it’s on me.  

 

More Than Just a Meal

In this photo, Ryan is 9 years old.

 

Readers, do you have a favorite food?

I don’t have a favorite food, but I do have favorite food-related memories.

  Being a junior high school student and making tostadas for a family dinner as part of an assignment for my seventh grade health class.  It was the first time I had cooked dinner, and I was proud of myself for coming up with a meal that included all the food groups.

– My husband and I eating our first meal in our first apartment:  a Burger King Whopper and fries.

– Celebrating my mom’s birthday with a special breakfast of hot chocolate and chocolate croissants, not knowing at the time I’d be giving birth to my son later that night.

For me, food isn’t just a matter of feeding my body; it’s about the who, the where, and the when.  Which is why I’m unwilling to drastically change my diet in hopes of decreasing the effects of my autoimmune disease.

Last week, The Mighty published my personal essay, “Why I’m Not Changing My Diet as Someone with Autoimmune Disease.” You can click here to read it.

My essay was also featured on Yahoo’s home page as well!

And if you do have a favorite food or food-related memory, I’d love to read about it in the comments section.

 

My Backbone

Last week, I wrote about my similarities to a frog and specifically this line:
“… and when the going gets tough, you show your backbone.”

So this week I’ll write about another Backbone.

I recently completed reading Karen Duffy’s memoir, Backbone – Living With Chronic Pain Without Turning Into One.  There aren’t many books out there by and about people living with chronic medical conditions (though I’m working on my own) so I was instantly intrigued to discover this one.

Generally, I read to learn, to gather information, or to be entertained.  With Backbone, I read to find comfort and solace that someone else out there “gets it.”

This week, I’d like to share with you some of the take-aways, the things that stood out for me while I read:

“I’ve learned a lot from my illness.  In some ways, it has been a gift.  It’s not a gift I would have picked out for myself, but when things were easy, I didn’t realize how tough I was.  When you live with a chronic illness, you get comfortable with being uncomfortable.”

“Millions of us, people with cancer, lupus, MS, Parkinson’s, sarcoidosis, fibromyalgia, Crohn’s, cystic fibrosis, and many other diseases will live for years with invisible but persistent illness.  Whether it’s the miracle of modern medicine or the luck of the draw, we are fated to have to find a way to live for decades with an incurable condition.”

“The ability to walk without pain is a gift that we don’t have anymore.  Being able to walk with pain and not give up is a superpower.”

“I would not wish a life with chronic pain on my worst enemy.  A painful life-altering event is one of the top fears for most of the population.  We who are chronically ill deal with what most people fear every single day.  We know our complaints are not moral weaknesses.  We find resilience, we adapt, and we figure out a new way to live.  We have guts.”

 

I’m a Frog

After answering the questions, it was determined that I am a frog.

Let me back up and explain that first sentence.

Last week, my dad, son, and I went to the Annenberg Space for Photography to see the National Geographic Photo Ark exhibition.  (If you are in the Los Angeles area, I highly recommend it.  The exhibit is on display until January 13th, 2019.  Joel Sartore’s photographs are astounding, and his mission is so inspiring!)

One part of the exhibit involved an interactive activity where visitors use a touch-screen to answer simple questions.  After making it known that I was an early riser and not a night owl, preferred a beach area to a snowy area, and would rather play with stuffed animals than video games, (there were other questions too), the determination was made that my Photo Ark animal was the Reinwardti’s Frog.

I’m not sure how I feel about being a frog.  (My son was also a frog; my dad was a toad).  

I think of frogs as slimy.  As bug-eating.  As noisy.  As the dead creature I had to dissect back in seventh grade biology class.

Though, when I read the paragraph explaining the “similarities” my animal and I shared, one line did stand out.  “… and when the going gets tough, you show your backbone.”

You don’t often think of frogs and their backbones.  And maybe people don’t always think of me as being tough either.  But if I’ve learned (and am still learning) anything during these years with a chronic medical condition, it’s that I am indeed tough.

 

Under Self-Attack

 

Time spent by the ocean is always good for my soul.

I have a question for you, dear readers.  How would you define “self-care?”  

For some, it means a bit of pampering, such as taking the time to get a pedicure or massage.  For others, it means doing something just for you, something that makes you feel good, whether it’s sitting down with a cup of hot chocolate and a good book or going for a walk.

But what about people like me?  People who struggle with invisible disabilities?  People for whom “self care” means something entirely different?

Click here to be redirected to The Mighty to read my recently published personal essay, “With Autoimmune Disease, There Are More ‘Self-’ Practices Than Just Self-Care.” 

 

 

Bartering for Health

Does it all come down to luck? My dad and my son breaking the wishbone. Thanksgiving 2017

 

We’ve had some scary health incidents in my family during the last couple of years.  During those times, I find myself praying, thinking good thoughts, looking for signs – even more than I usually do. 

And then I take it to the next level.  I start making “deals.”  I try “bartering for health.”

It’s a crazy kind of deal that implies I’ve got some sort of power and control, and that this higher power is just waiting, listening, and receptive to requests for such health-related barters.”

The paragraph above is taken from my personal essay, “Bartering for Health” which was published in the Fall issue of Breath and Shadow.  You can click here to read the rest of my essay.