Chronic? Yes, Unfortunately.

“Chronic congestion.”

No, she wasn’t talking about the 405. 

The physical therapist was talking about my left calf. My calf is, was, the primary source of pain related to my autoimmune disease. For the last few months, the pain has traveled and now extends up into my thigh.

But apparently, what I refer to as a hard knot, or tightness, in my leg, my physical therapist calls “chronic congestion.”

She held my leg up, my foot pointing toward the ceiling as she rubbed and massaged and gave a basic summary of my case to another physical therapist. “She’s got chronic congestion all in here.”

It is chronic. I’ll give her that. My condition began in 2010 when I woke up with a swollen left calf, unable to stand or bear weight or walk for days. I was hospitalized and treated for cellulitis, a bacterial infection doctors believed was the cause of my swollen, red calf. 

But even after my calf regained its normal appearance, even after I could walk and drive and climb stairs, my legs were never the same.

About a year and a half after my hospitalization, I was diagnosed with a rare autoimmune disease called Undifferentiated Connective Tissue Disease (UCTD). It has overlapping symptoms of lupus, rheumatoid arthritis, and myositis without it being any of those diseases. It’s a medical hodgepodge in a sense, and a whole lot fancier way for doctors to say they don’t really know what’s wrong with my legs or what is causing it.

Whatever you call it, it means each day I experience varying levels of pain, fatigue, weakness in my legs with my left leg always worse.

So I completely agree with the chronic part of her statement.

But “congestion”?

I hear congestion, and I think of a stuffy nose. 

Or I think L.A. traffic and planning a visit to the Aquarium of the Pacific on a Sunday, a day the 405 is generally less congested.

It’s been weeks since the physical therapist used that term, and I can’t stop thinking about it – “chronic congestion.” 

It bothers me. 

Because, what can we do about chronic congestion?

City planners haven’t figured it out when it comes to southern California’s freeways.

And, as of right now, doctors and physical therapists haven’t figured it out when it comes to my legs.

 

Hoping For Courage

What is going on inside these legs?

Without going into details, I have a medical test/procedure scheduled later this week. 

Here’s what you should know:

I’m living with my autoimmune disease for almost 10 years now. In that time, I’ve already experienced this particular test twice. Each time the results were inconclusive. 

The test is being done a third time mainly for comparison purposes. It’s been a few years since the last test, and doctors are interested in seeing if any changes show up this time around. There are some concerns that my left leg may be worsening. If so, this test may give some clues about what’s going on in my leg.

Aside from the fact that I don’t want to have this test in the first place, I’m not sure what to think about this test and its possible results.

Here’s the dilemma:

Do I want the test to reveal something? To pinpoint a reason why my leg pain is increasing and my leg strength is decreasing? Would this perhaps give doctors a lead, a clue, in terms of more effective treatment? 

But what if my leg does test worse? What would that mean? 

Or, do I want this test to be like every other test I take – indeterminate? Within the boundaries of normal-enough? 

Which is reassuring I guess, but on the other hand it also means it provides doctors (and me) no answers, no explanations, no reasons why I feel the way I feel.

In reality the only thing I can realistically hope for is courage. Courage during the test. And courage after the test. In whatever form I may need it.

 

A Promise To Myself

Today is generally the day when many people state their new year’s resolutions. Grand plans for dreams, goals, and aspirations.

I’m not going to do that.

Instead, I’m going to state my intention to continue working on my memoir. I’m going to promise myself that I will not give up on sharing my story. 

For my fellow writers out there, I highly recommend Writing Hard Stories: Celebrated Memoirists Who Shaped Art From Trauma by Melanie Brooks. This collection is such an inspiration, providing insight into how different writers took something hard/terrible/horrific and used it to create something beautiful/meaningful/relevant.

Here are a few passages I’d like to share with you:

“The reason I write memoir is to be able to see the experience itself in a new way. I hardly know what I think until I write. The therapy is one way of sort of processing things. But it’s only in writing about some of these things that we discover and understand the metaphors of our experience that give our life meaning. Writing is a way to organize your life, give it a frame, give it a structure, so that you can really see what it was that happened.” – Sue William Silverman

“I was a writer, and then this big thing happened in my family. And the way that I tend to try to understand things is through stories – both things that I write and things that I read. That’s the deepest way I know of expressing something inexpressible.” – Joan Wickersham

“You take what you’ve been through, and if you are a writer, you have to write about it.” – Suszanne Strempek Shea

“It really becomes memoir, though, when you open up space for others to enter – when it becomes about more than you, or your family, or your own personal feelings.” – Edwidge Danticat

“Don’t forget, it’s scarier not to do it than to do it.” – Abigail Thomas

 

It’s Complicated – Working with an Autoimmune Disease

When I went to my local library and typed in “autoimmune disease” in the keyword search (I miss card catalogs, by the way), a dozen books were listed.

12 books. And one of them had to do with pet health.

That’s how I discovered Women, Work, and Autoimmune Disease written by Rosalind Joffe and Joan Friedlander.

Both authors live with autoimmune diseases. They’ve been there – dealing with the uncertainties that come with living with an autoimmune disease, the unpredictability, the sheer will it sometimes takes just to get through the day.

But, there were many times I came close to not finishing the book. 

It was written in an overly simplistic, just-keep-going and make-some-changes kind of way. And that doesn’t work for everyone. 

For my readers who don’t know, I was an elementary school teacher, before retiring due to a disability. I taught for 12 years. I had planned on teaching for many more. But teaching doesn’t provide many opportunities for flexible work hours or workplace modifications (topics discussed in this book). 

However, even though I didn’t particularly like this book, I did find passages that caused me to pause for a moment and think, “Exactly.” 

This week I’d like to share these passages with you.

“Autoimmune diseases are fickle, and what might adversely impact your symptoms one day might not affect you the next.”

“It takes determination to look at deceasing possibilities and refuse to crumble. It takes courage to face the loss of what you could do and see opportunity in its place.” 

“Grief is an emotion that is often overlooked when talking about chronic illness, but it is critical to any discussion about living with AD – with translates into learning to live with loss. That’s not to say that there aren’t gains here, too. But loss is inevitable, even at the basic level of not being able to do or feel as you once did.”

“The truth is that no one knows what’s around the corner, but living with chronic illness means that unpredictable health is more likely.”

“On the days when you feel your worst, you can look fine. You don’t sport the red nose of a cold or the cast of a broken wrist to support your case. Because you look the same as you do on your good days, you wonder if people understand the symptoms that they cannot see.”

“It’s undeniably true: your illness has changed the way you view your world and your life. It has quite literally transformed your physical capabilities – at least for the short term – and has most likely altered your perception of yourself.”

 

Helpful or Hurtful?

Working my muscles – playing with my son at the playground.

“How long has it been like this? When did it start?”

My physical therapist asked me that at last week’s session as she was massaging my left leg.

“Nine years ago,” I said.

She made a “tsk, tsk” sort-of-sound. 

“It feels like you’ve got 10 years’ worth of tightness in here,” she said. 

She rubbed some more. “How do you walk around like that?”

“What other choice do I have?” I replied.

For the past three weeks, I’ve been going to physical therapy. Many years ago, a doctor had referred me to physical therapy. And the physical therapist discharged me after just a few visits, telling me that PT wouldn’t help me.

This time, my rheumatologist referred me because of “new” pain I described to him. After an exam, he believed I had injured my IT band, and now, because we had a specific injury to treat, physical therapy might help.

My physical therapist seems to wholeheartedly believe she can help me, but I’m skeptical. 

At my first appointment, my physical therapist told me I have a lack of flexibility and mobility in my left leg. 

I knew that already.

At the same time, going to PT has also given me a certain sense of validation. Someone else recognized and acknowledged my pain; someone else was able to “see” what is largely unseen.

I came home from my first appointment with my knees taped up. Later that afternoon, my eleven-year-old son told me it looked cooler on basketball players than it did on me.

I left my third appointment with more pain than I had when I began the appointment. 

Meanwhile, I’ll keep with it. I’ll continue going, partly because my insurance covers most of it, but also because I don’t want to entirely give up. At least not this soon.

Though at this point in my life, I wonder if anything can really help me. 

Plus, physical therapy is just more work. With the therapist, I’m working my muscles in different, and sometimes uncomfortable, ways. 

At home, I have my “homework” to do – a series of exercises and stretches I do daily. 

And there are days, when I’m just tired of it all. Tired of the work involved – of staying on top of prescription refills, appointments, and medical insurance. 

And I’m tired of the pain. 

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.

 

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.

 

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.”