Wednesday, August 18, 2010

Square One

On February 17, 2010 I see Dr E, my first Rheumatologist for my weird-ass-hand-crap.  He looks at my hands and at my bloodwork.  He tells me I probably have an autoimmune disease.  His best bet is Scleroderma, but he can't be sure at this point.  He orders repeat bloodwork because what the hell, that's what you do. 

March 17, 2010--I see Dr E for the results of my bloodwork.  ANA is still positive.  Now he's saying either Scleroderma or Lupus.  He offers to put me on Plaquenil, a malaria drug now used for autoimmune diseases, but recommends that I wait until April to see the specialist at Tufts.


August 18, 2010.

That'd be today.  I got a phone call from Dr K at Tufts to discuss how my hands are doing off the steroids.  I told him they are shitty.  (Except I said it much nicer.)  He offered to put me back on a low dose of prednisone, but I told him I have an infection (see below) and he said that I should probably stay off them for now then.   I told him what the neurologist had said about the neuropathy.

Dr K said, "Hmm.  Well then, we're probably looking at an autoimmune disease."

I said, "Okay."  This is not really a surprise.

Dr K said, "I'd like to put you on Plaquenil.  Have you heard of it?"

I said, "Yes, indeedy.  Funny you should ask."  (except I didn't actually get snippy.)

So yeah.  It seems that after five months of running around, blood tests, xrays, injections of radioactive dye, shotglasses full of barium, tube blowing, side effects, try this drug now this one now this one, waiting, panic attacks, 'roid rage, electric shocks, extreme phone tag, and more nights than I can count trying to go to sleep at night knowing that both M and I are laying there wondering if I'm dying--I'm right back where I was on that March 17th appointment.

I'm pretty sure that's what just happened.  Maybe we know a little bit more about what it's not, but we still don't know anything else about what it is. 

My brain is battling with this one.
This is good!  We are making progress!  We are ruling out things.  Keep on chuggin!  And then.  What the fuck!?  We only  ruled out stuff that they brought in after making no progress on the first it's-autoimmune! decision.  This is bullshit!  Five months of specialists and full body testing in Tufts Medical and all they can come up with is EXACTLY what one Rheumy came to the conclusion of after one goddamn bloodtest?!?!  You get the idea.

I'm starting the Plaquenil tomorrow.  I have to see an eye doctor within the month though because Plaquenil's one major side effect is blindness.  That's a pretty crappy side effect, but it only happens to 1 in every 100 persons and can be prevented by seeing an eye doctor when starting and then every 6 months to make sure the medicine isn't building up in my retinas.  Can do.  Will do.  I like seeing.

Also, M brought me to the clinic this morning where I peed in a cup.  I have a urinary tract infection.  There's a first for everything, I guess.  Stupid prednisone.  They put me on antibiotics and I'm supposed to call back on Monday to check on the extended results of my cup-o-pee. 

This now puts my daily pill intake at 11, as long as I don't need my anti-iflamatories (2 a day), my painkillers (another 2) or my sleep aid (just the 1).  I just kind of want to pour them all in my tub and take a bath in them.  Maybe that would get us somewhere.


  1. *Bangs head on wall for you*
    Running around in circles is a blast!
    Be sure to consume a TON of pro-biotics to help keep things balanced with the antibiotics.

    Just keep swimming, swimming, swimming

  2. Yup. It's fun stuff. I'm usually all over the yogurt but my antibiotics specifically say not to take it with yogurt but I have to take it with food. So I'm trying to find a way to work in a meal of yogurt somewhere, but I'm never hungry when I'm sick. 9_9

    You keep swimming, too! Maybe eventually we'll find a beach with umbrella drinks!