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Tuesday, June 3, 2014

Oh the irony

I find it sort of (and by sort of, I mean very) ironic that I started a blog about being sick, but as soon as it gets worse I drop the ball.
Actually, I drop everything.  Pens, pills, a bottle of nail polish remover on my nice black lacquered end table. (ruined, in case you were wondering.)
I was hoping that I would be able to surprise everyone with the astounding news that I was going to be starting an online  Master's degree through University of Tennessee. (I've bled orange since birth.  #VolForLife ) I was going to have to rush to take the GRE, apply, and be accepted all before August.  It was going to be a great tale of perseverance and triumph.  Then I tried studying yesterday and could not focus on anything but my aches, barely able to keep my eyes open even after a nap.  I saw my PCP yesterday as well, and she pointed out that they were probably going to have to change my meds again; that it could make me feel worse before better.  And that's when my stomach dropped and my brain started yelling "do you really want to take out student loans when you can't even drag your butt to the pool to lay around?  If something happens, then what?  You're out thousands of dollars."
And so, instead I am writing about the frustration of having my major life decisions made for me by my body, not me.  When my husband got a job halfway across the country I had to stay for months at home alone until his new insurance kicked in.  I went to an instate college because I would have been uninsurable if I gave up the plan I had from childhood.  Now, my job is evolving around this disease- although don't get me wrong, I understand how lucky I am and am SO GRATEFUL to work for an office that cares enough to help me evolve.  I used to be just a straight up ophthalmic technician, a fancy way of saying "a nurse for an eye surgeon." I scrubbed in on surgeries, got patients ready for their exams, went in with the doctor to assist him.  I adore it.  I would gladly traipse around after a doctor all day, being shown unusual occurrences and learning more about diagnosis and treatment.  But, unfortunately, my body has other plans.  Now I find myself handling the contact lens department, which is new and different and I always like learning new things.  Now I'm helping docs fit state of the art lenses for medical conditions which, is pretty damn cool.  But I didn't really make the choice to switch, my symptoms did it for me.
I think it's finally starting to sink in that I have to change my life to accommodate the different needs presented by these symptoms.  But that is so hard to do when all I want is to be a carefree 28 year old who hangs out by the pool on weekends and goes out for drinks with her co-workers after work.  I don't want to worry about having a cold pack for my Enbrel on vacations, or balance between enough prednisone to calm a flare but so much that my teeth itch and I can't sleep. Or the stress of a backorder injectable that your insurance won't cover a substitute for.  In fact, I wish I knew nothing about how insurance worked. 

I know you guys have had similar experiences- when was the first time you realized you might have to compromise something else for comfort and health?  Change a habit, or give up something you loved? When did it really hit home for you?



  1. It's hard to remember when I first realized that I couldn't power my way through my symptoms. Another member joined our support group at about the same time I did and we found that we both had enjoyed mountain trail hiking in our former days. A few years after my diagnosis, when I had my symptoms fairly well under control, I tried hiking again. It was so exhausting that I could only manage two miles with a fanny pack instead of a day hike with a light backpack. And with the medications I was on I had to stay out of the midday sun. I just couldn't believe that my body would betray me so. I am older now, so even without RA I might not be able to hike or mountain bike a full day. But I do get angry that I wasn't given a chance to find out!

    1. Anonymous from June 12 brings up the perfect word- betrayal. That's exactly how it feels, especially when you used to enjoy exceptionally physical activities. Thank you so much for sharing your experience!