CreakyJoints is delighted to welcome Katherine Macfarlane to the CreakyJoints featured Blogger lineup.HeadShotKMacfarlane1

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Katherine Macfarlane

 

Hi.  I’m Katherine and I’m an arthritic.  I’ve had Rheumatoid Arthritis (“RA”) since I was 13 months old.  I’m told that one morning I stopped wiggling around in my crib the way I used to.  My parents rushed me to the hospital, where I was mistakenly diagnosed with leukemia and a string of other life-threatening illnesses.  When the doctors finally settled on JRA, they put me on high doses of liquid aspirin, which, it turns out, I’m allergic to.  Seriously allergic to—I got hives, a fever, a rash and had difficulty breathing.

Being allergic to aspirin is seriously inconvenient.  But of course I don’t remember my diagnosis, or my reaction to aspirin.  That’s all been retold to me second hand by my tough-as-nails-take-no-bs mother, who, once I turned six, was herself diagnosed with RA.  When I realized that she had the same thing as I did, I trembled.  And she knew what was coming, which probably made it worse.

I don’t remember my diagnosis, and I don’t remember life without RA.  Instead, I remember the taste of Tolectin ground into my applesauce.  I can still feel the casts I slept in when I was three, the ones that kept my legs straight at night to stop them from warping into bent messes.  The casts latched onto my little legs with itchy Velcro straps; they were tight and made me sweat from thigh to ankle.

I’ve been on so many medications over the years that I can no longer rattle off the complete list.  I’ve tried and failed something like 30 different drugs.

I know that I’ve had iritis for about as long as I’ve had RA, but again, who knows when I became conscious of this additional disease.  I also don’t remember life without eye problems or eye doctor appointments. I can close my eyes and imagine myself as a four-year-old, holding my mother’s hand while I stared down at the grey concrete sidewalk, floater cells moving across my field of vision.  Fun fact:  I developed glaucoma in my 20s, not spontaneously, but as a side effect of the steroid drops I was taking to control my iritis.

So now, in my 34th year, I visit a rheumatologist (for the obvious), an ophthalmologist (for the iritis and the glaucoma), a neurologist (that numbness and tingling that’s totally consistent with RA could be something else, like MS, you never know), and an ENT, on a regular basis.  The ENT takes care of all the weird infections and colds my suppressed immune system invites in on a regular basis.  I try not to be a germaphobe, but if I hear your phlegmy cough headed in my direction, I will keep a comfortable amount of personal space between us.  Or I will hobble away, at a slow to moderate speed.

What’s most impressive about my RA story?  I’ve been on prednisone for twenty-three years!  WHAT?  So yeah, I’ve been starving and moody and twitchy and not getting enough sleep for about 23 years.  I’m going to taper down to 3 milligrams at some point this winter, when I’m off work, when I can react to any unexpected flare with some serious couch time.  Zero milligrams is probably never gonna happen.  I can’t get off the damn stuff.  There were a few years where the pred stopped working and I had to have 40 ccs drained out of both knees during the same appointment (a few weeks before I took the New York bar exam) and switch from pred to its cousin, methylprednisone.  Those were some dark days, man.  I did pass the bar though.

Enough of that depressing stuff.  The thing is, if you met me and didn’t know any of this, if you didn’t know that I’m focusing a lot of my energy on correcting my limp and wondering if Express Scripts will get its act together, all you’d see is a legit overachiever.  I mean, I’m a law professor!  I love teaching and I adore my wonderful students.  Before I was a law prof I was a lawyer, and I was decent at that too.  Before that, I was good at school, I was good at sports, I was good at languages (I speak decent Italian and more-than-decent Spanish), I was good at having boyfriends . . . blah blah blah.  I am so good at pretending to be perfect that people have told me they envy my life.  Which I find hilarious.

This veneer of perfection has its downside.  When I tell people I’m sick they assume it’s something I’ll get over, like a cold, or a shin splint.  I have to get very specific before they understand.  My go-to “this shit is real” examples include the following information:

“Yeah, I get this infusion of a chemotherapeutic agent . . .”

Or,

“After my last glaucoma surgery, which didn’t go as planned, I was legally blind in my left eye for six months.”

And even then I look so goddamn hearty (rosy-cheeked, smiley, blonde) that most people never grasp that I’m really, really close to tooling around in a wheelchair.  That I am preparing for that moment.  That I live in fear of that day and that as healthy as my routine is (Vegetables!  Limited alcohol consumption!  Exercise four times a week!  Stretching!  Constant stretching!) I’m also in a great deal of denial.  About how much harder it is, with each passing year, to stand for longer than a few minutes.  Of how weird my right knee feels.  About how I can’t recall the last day I felt good.  I don’t remember.  I just hurt.  All the time.

So despite outward appearances, I am constantly raging a multi-theater war:  against my mail order pharmacy, against the various levels of incompetency at different medical offices, against the newest manifestation of this never-ceases-to-surprise-me disease, and against the unknown—how disabled will I be after another 33 years of this?  Will I survive that long?

But after 33 years of pretending like it’s no big deal, and that I can handle it all without breaking a sweat, I’m coming clean.  I’m swallowing my pride.  And my prednisone.  And, you know, like 12 other pills, every day.  Fair warning:  this blog isn’t going to be pretty.  There’s nothing lovely about this disease.  It’s painful and exhausting.  There’s a very specific solitude that comes with living with chronic pain.  But despite it all, my life is often so ridiculous that I can’t help but laugh.  So sit back, pour some ice onto that swollen knee of yours, and enjoy the ride.  We’re in it together.

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