Invisibility

spoons

I was at my kids’ baseball practice when I got the call: my blood test had returned and the doctor wanted to see me the next day.  The urgency made me nervous, or as nervous as the mind-crippling fatigue would allow me to be.  At my follow-up appointment, I had my first autoimmune diagnosis: “off-the-charts” Epstein-Barr Virus.  And so my journey began.

Since then, I’ve added rheumatoid arthritis and psoriatic arthritis to my little list.  My medications have ranged from weekly injections of B12 to sulfasalazine to meloxicam to methotrexate.  My emotions have ranged from depression to apathy to anger to determination to gratitude and still do on any given day.

It took six months for my Epstein-Barr to be considered chronic by my naturopath.  My feelings upon hearing this were mixed.  I felt vindicated (I knew there was something wrong and here was proof) and helpless (there was no telling when I’d flare or for how long).  I set out to learn everything I could about natural healing and management of this disease, focusing much of my attention on diet and essential oils.  I turned my training level down a notch and began my B12 injections at the doctor’s office every Friday.  I found my grit and ran my second marathon.  I found my common sense and realized that my second was likely my last, as it sent me into a months-long flare of fatigue and brain fog.

During this time, I began grappling with the true sense of that word, chronic.  It meant forever.  It meant always.  It meant I would never know how much energy or reasoning capabilities I would have from one day to the next.  I knew in some ways, I was incredibly lucky.  I was lucky for having a doctor that tested and treated my disease; for having a naturopath who was a fellow EBV warrior; for having an incredible support system within my home.  Not everyone with an invisible illness is treated with such compassion, because we don’t look sick.

Fast forward about two years.  My joints began to ache.  My breath grew short.  While I was certain these were simply new and expected symptoms of CEBV, I made another appointment with my primary doc just to be certain.  Again he said to me, “Jen, how are you sitting here with results like this?”  Meaning, he couldn’t believe I had managed to get out of bed, let alone to his office.  Rheumatoid arthritis was my new lifelong pal.  Weeks later, my new rheumatologist sent me to a dermatologist to confirm her suspicions: I also had psoriatic arthritis.  So, okay… I did more research.  I ran the gamut of feelings.  I found my acceptance and my determination and I find them on a daily basis.

Things we don't want to hear...
Things we don’t want to hear…

Life with CEBV was tough.  Life with RA is tougher.  I can expect my symptoms to worsen over time.  If I research too much, it can be overwhelming, as right now, there is no positive outcome for this disease.  It doesn’t end.  It never heals or goes away.  It’s as much a part of me as my skin or my heart or my spirit.

Before we found what works for me, my rheumy (that’s what we RA warriors call our rheumatologists) prescribed sulfasalazine and meloxicam.  My symptoms worsened.  My joints felt like knives and my fatigue took over.  She switched me to methotrexate, a chemotherapy and immune suppressant drug.  It’s working.

So here is what life is like now:  With the methotrexate, I am feeling markedly better.  This means for five days a week, I am now back to my pre-autoimmune self.  I work out.  When my stress fracture heals, I will skate with my roller derby team and hike and run short distances.  I am able to complete mundane tasks that I previously took for granted, like laundry, housework, and opening pickle jars.  I will make my doctor and my phlebotomist shake their heads and smile when I show up with my blue or purple hair (the color is not a random choice) and derby bruises and Spartan tshirts.  ra

On the day I take methotrexate and the day following, I experience what is known as an “MTX hangover.”  It’s pretty much like a regular hangover paired with bone-crushing fatigue.  On these days, I enjoy Netflix marathons and many snuggles with my kids and pups.  I read if I can keep my eyes open and binge watch shows like Pretty Little Liars, Buffy the Vampire Slayer, and Orange Is The New Black.  My daughter brews me tea with tablespoons of beef gelatin.  I apologize to my family and feel weepy and they hug me and tell me to shut up.  And then I get five more days of wondrous moments of feeling almost not sick.

Because the pain is never completely gone, just much better.  If I push too hard on my good days, I can easily bring on an extra bad day.  There are only so many spoons I’m granted.  (Read The Spoon Theory here.)

Why are autoimmune diseases suddenly so prevalent?  Why do women comprise the majority of sufferers?  There are differing ideas, but many of them ultimately agree on some basic points.  Genetics.  Environment.  An overall change in the way we eat and care for ourselves now compared to the way we did fifty years ago.  There are toxins in our food and our hygiene products and the air we breathe.  Read more on that here.  As far as the gender prevalence, they simply don’t have an answer beyond “maybe it’s hormones.”  In the meantime, men are joining our ranks in ever greater numbers.  To understand more about autoimmune diseases, read these FAQs and answers here.

So there you have it, my experience with autoimmune diseases so far.  As you can see, it’s ongoing.  Most of us aren’t looking for pity, just understanding.  If you see a young woman parking in the handicap spot at Wegmans, she could be me on a bad day.  I haven’t done that yet, but there are days I wish I had a cane to help me walk.  There are days the bones in my feet feel more like shards of glass.  But you wouldn’t know it to look at me.  And chances are, unless you’re a close and trusted friend, I’m not going to tell you.

autoimmune

I’m pretty vocal about autoimmune advocacy, so I hear from more and more people suffering from chronic diseases.  Friends that run Spartan Races with me.  Derby girls that skate beside me.  Sorority sisters that never complain.  We are everywhere and we are still doing the things we love when we are capable of doing them.  We look just like you.  Which makes it harder for those on the outside to understand why some days, we just need our pillows and our tea and our mindless tv shows.

This week is Invisible Illness week.  Read more.  Learn more.  Support more.  Understand more.

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