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.

 

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.” 

 

 

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.