Here’s Why I Have a Complicated Relationship With My Legs

Do you have a body part, that only now, a bit later in life, you have learned to genuinely appreciate? A body part you now realize wasn’t nearly as “bad/flabby/unattractive/you-fill-in-the-adjective” as you used to think?

I have a complicated relationship with my legs, because sometimes they just seem like these “things” that are disconnected from the rest of me.  These limbs that aren’t behaving the way I want them to.  These appendages that are causing me nothing but trouble and pain.”

The paragraph above is taken from my recently published essay “Why My Rare Condition Puts Me in a Complicated Relationship With My Legs.” Click here to be redirected to The Mighty where you can read the essay in its entirety. 

 

Brave? Me?

LEGOLAND, March 2018 – Ryan and I were brave, riding the roller coaster!

A neighbor recently called me “brave.”

It temporarily stopped me, because I don’t consider myself a particularly brave person. 

I have lived my entire life within the same ZIP code. 

My first passport expired before I earned a stamp in it. And since then, I’ve had one international trip. 

But my neighbor spoke of my bravery in a different context. 

We were speaking, in very general terms, of my autoimmune disease. 

We were speaking, in very general terms, about my pain level increasing as the day goes on.

Yet, she sees me outside on a regular basis, sweeping my front steps and my back patio. Watering my plants. Going for a walk with my son. 

I don’t regard those activities as “brave.” They are merely the activities that make up a part of my days.

Am I brave? I don’t know. 

So I did what I usually do when I’m not sure about something, when I need more information. I looked it up. I used my computer’s dictionary to read the definition of “brave” – “ready to face and endure danger or pain; showing courage.” 

Am I “ready to face and endure danger or pain”? 

I don’t have a choice. It’s just what I do.

 

Slow and Steady

Galápagos Tortoises at the San Diego Zoo

 

Each morning, my fourth and fifth grade students began the school day writing in their journals, answering a prompt such as “What animal are you most like? Why? 

Lately, I find myself thinking about that prompt and wondering. 

What animal am I most like? 

I don’t know. I can’t narrow it down to one animal that is most similar to the person I am on a daily basis. Maybe because I feel like a slightly different version of myself each day, throughout the day.

And so begins my most recently published personal essay, “My Slow and Steady Path Forward With an Invisible Disability.” Click here to be re-directed to The Mighty and read the rest of the essay. 

Readers, I’m curious.  What animal are you most like? Why?”

I encourage you to share your responses in the comments section.

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.

 

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.

 

Here’s Why Invisibility Isn’t Always a Super Power 

My son and I playing handball. Disabilities don’t all look the same.

Close your eyes for a moment and picture a disabled person.  Keep that image in mind.  

What does she look like?  

How does she behave?  

What can she do?  

What can’t she do?  

What does she need help with?

 

Now, tell me if these descriptions match the picture in your imagination:

A woman and her son ride their bikes in their neighborhood.

A woman spends 30 minutes in her garden, weeding, pruning her bougainvillea vine, re-arranging large pots, and then sweeping up the mess she made on the sidewalk.

A woman goes for a leisurely walk in her neighborhood, bending over to smell a light pink rose, stopping to admire a butterfly that is perched on a leaf.

A woman sees her ninety-year-old neighbor arrive home in an Uber.  Her neighbor struggles to hang the grocery bags from her walker.  The woman goes across the street, and carries the bags for her neighbor, helps her neighbor into her house, and brings each bag into her neighbor’s kitchen.

 

What if I told you the woman above was me.  And what if I told you that according to the state of California, I am also a disabled woman.  Do my actions match the mental image you had?

Probably not.  Most people have a very limited idea of what a disabled person looks like.  I know I used to.

Which brings me to my newest essay.  Last week, The Mighty published my personal essay “Why ‘Invisibility’ Is Not a Superpower When It Comes to Illness.”  You can click here to read it. 

And remember, just because you can’t see someone’s pain, doesn’t mean they aren’t hurting.

 

 

A Passionate Life

Four years ago, “A Life of Passion,” a personal essay of mine,  was published on mamalode.com.  (Click here to read it).  I wrote about the big events of 2015 – namely, my mom turning 70 and my son turning 7 on the same day.  I wrote about these two very important people, at very different stages of their lives, each living their days with passion.

And I feared I wasn’t.

Four years later, and in just a few days, my mom is turning 74 and my son is turning 11.  And a few weeks ago I turned 43.

But what has changed?  And what has remained the same?  

Both my mom and my son continue to live passionately.  There is no doubt about it.  They are each taking care of their responsibilities and doing things that make them feel good.

And me?  

I love my family passionately.  I never let my pain, my fatigue alter the way I show my family love.

I think, I hope, I express myself passionately through my writing.  

Amusing to my husband, and annoying to my son, is the way I passionately yell at the TV when we watch basketball, worried when a player hits the ground or when two players begin to exchange shoves and pushes.  

But do I live passionately?  Do I do all the things I’d like to do, or do I hold myself back because of fear, the possibility of “what if…?”  Yes and no.

Sometimes I wonder if I’m the same girl who took belly dancing classes, or went parasailing, or enjoyed a hot air balloon ride.  Am I no longer doing such things because I’m older?  Because I’m a mother?  Because I’m often in pain?  It’s so hard to separate and know which parts of my life would have been different and which would have remained the same had I not become ill.

 

5 Things I’m Learning From My Autoimmune Disease

Last week marked the 6-year anniversary of the day I left my teaching career. I still miss it. But I like to think that I’m still teaching – just not in a traditional classroom – but through my writing and in all my interactions with my son. And I’m still learning. In fact, living with my autoimmune disease has taught me some surprising, unexpected lessons. Here are 5 Things I’m Learning From My Autoimmune Disease.

  1. Small pills aren’t always easier to swallow.  I take a lot of pills each day; both prescription medications to try and control my body’s inflammation as well as over-the-counter supplements. Pills come in different sizes. Some are taken with food. Some without. Some are taken every day, at certain times of the day. But there’s one medication I take only once a week. It’s a small pill; probably the smallest pill I swallow. But each Saturday night, I have to take 10 of these little pills. And after a while, those 10 small pills feel more like 10 giant multivitamins.
  2. Being a chronic patient improves my vocabulary and spelling skills.  Since becoming ill, I’ve learned about different “-ists” – gastroenterologist, urologist, neurologist, ophthalmologist, nephrologist, rheumatologist. I’ve also been subjected to different   “-scopies” – endoscopy, cystoscopy. Many were words I had never heard of before. Some were words I had no idea how to pronounce (endoscopy). And some, I still don’t spell correctly on the first try (ophthalmologist). 
  3. I’m willing to have my belly button resemble a volcano.  When I was newly diagnosed and desperately trying to hold onto my life and my teaching career, I tried a variety of things on the chance they might help. I bought compression stockings. Didn’t help. I propped my legs up with several pillows every time I sat on the couch or reclined in bed. Also didn’t help. And me, the person who doesn’t like needles, who always looks away when having blood drawn, saw an acupuncturist. I paid her $100 per visit so she would poke me with ultra-thin needles. Occasionally, she also burned Moxa, and once placed it inside my belly button until it looked like a mini-volcano was erupting on my body.  And it didn’t help my pain.
  4. A blood clot will seem like an attractive alternative.  My illness began on a Sunday morning when I woke up with an incredibly swollen left calf. I couldn’t stand, and once in the ER, all the symptoms (redness, swelling, pain in my calf) suggested a blood clot. I believed that my swollen leg would somehow be popped like a balloon until it was deflated and I was back to normal. It wasn’t a blood clot, and it didn’t return to normal. In fact, while in the ER my calf became more red, more swollen, and more sensitive to touch. Doctors didn’t know why. But a blood clot would have been so much easier. Something that was identifiable, treatable. Something that was temporary. (I was treated for cellulitis, and a year later officially diagnosed with my autoimmune disease).  
  5. An invisible disability is like the wind.  Invisible forces are powerful. You never see wind; wind is invisible. But you see and feel the effects of wind – wind chimes tinkling, kites soaring, leaves rustling. My invisible disability has the same strength as gale-force winds. It made it necessary for me to retire from my teaching career. It qualified me for a disabled parking placard, though I don’t rely on an assisted walking device and appear to be “fine.”

 

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.