my story

it's about time to get this in writing...

it all started with my right middle finger.  without any warning, I woke up one morning about seven months ago and it was swollen, stiff, painful, and the knuckle was a disturbing red/purple color.  a mystery, indeed.  had I jammed it at the gym?  did I hit it on the door frame?  did I sleep on my hand funny?  I could not remember doing any damage to my hand, but I figured I must have injured it somehow.  it would clear up in a few days, for sure.  well, the days went by and instead of getting better, the stinkin' middle finger just got worse.  it made it difficult and painful to comb my hair, turn on the faucet, open a ziplock bag, put on my shoes - it was quite the annoyance!  and at this point, just an annoyance.  I don't think the concern really set in until other fingers started following suit.  until then, I just continued to explain it away and assume all would be back to normal soon.  why would I think anything else?

but then the rapid spreading of symptoms began.  first to different fingers, then my toes (although anyone who knows me well knows I've had foot issues for forever.  bunions in your teens.  sexy.), onto my ankles, some swelling in the knees.  that's when the a-word first entered my thoughts.  could this be... arthritis?  I had been maintaining a pretty rigorous workout routine for some time - maybe I had done some damage to my joints?  I've never been one to shy away from the doctor like some, so I didn't hesitate to make an appointment to get in to see the expert.  by the time the appointment came around, I was pretty convinced it was arthritis, but even at that point I was thinking osteoarthritis, which is damage done to joints by physical activity.

my primary care physician, Dr. B., a lovely woman who had spent some time living on the East side of Michigan in her younger years and thus we were bonded, took one look at my inflamed hands and immediately ordered blood work.  that's when the big boy first entered the picture.

rheumatoid arthritis.  an autoimmune disorder that causes your body to attack itself, mainly the joints, but also the organs, skin, and other areas and functions of the body.  it's not caused by wear and tear or extreme running routines; it is a disease.  an illness.  blood work would measure my antibody levels and x-rays would show what, if any, permanent damage the disease had already done to my joints.

it took three long days for me to hear back about the results of my blood work.  I remember it like it was yesterday.  I had the day off from school, work, and internship and was sitting on the couch eating lunch and watching some mindless tv.  the phone rang, and it was Dr. B. on the other end.  she wasted no time and told me that one of the three blood work panels had come back and my antibody levels were through the roof.  it was rheumatoid arthritis, she said.  but there are still two other panels to be read, I countered.  is it possible that I don't have RA?  those results could be different.

no, the antibody levels could not be ignored.  all signs pointed to RA.  extreme, aggressive RA that was wreaking havoc on my body.  she made the referral to her favorite rheumatologist ("because he is thorough and his charting is very detailed").  I was able to get in to see Dr. J. within a couple weeks.

let's pause here.  the initial diagnosis was like a sock in the gut.  the tears flowed freely and violently, the phone call to share the news with husband John was sob- and snot-filled, and my immediate emotional response was hopelessness and fear.  I felt totally caught off guard, unprepared, ignorant, in the dark, and scared shitless (sorry, mom).  I had no idea what this diagnosis meant or what the future would hold.  I didn't know the first thing about treatment options or disease progression or how to live life with RA.  I was looking straight into a black hole and it was frightening.

word to the wise: when faced with a situation like this, do not google the disease you've been diagnosed with.  all I found was some disturbing pictures that would give small children nightmares.  yes, those fingers bent at 90 degree angles are accurate pictures of what my hands may look like someday, but I didn't need to know that on day one.  as you may expect, it didn't do anything to help my feelings of hopelessness.

by the time I went to meet Dr. J., I had calmed a bit.  like I said, I trust doctors and am not opposed to medical treatment.  I couldn't wait for Dr. J. to prescribe me some pills and be on the road to recovery.  oh, how much I have learned in the last six months.  there is no magic pill, evidently, and the road to recovery really isn't recovery-bound, but more geared towards symptom-management with a here-let's-try-this approach.  let me tell ya, it's an exhausting road to be on.  the destination is unknown, and you just have to hope and pray for the best.  and the scenery is not pretty along the way - purple joints and medication side effects make sure of that.  there is no map to follow, but just a guide who you have to trust because he's your only hope for finding a smoother way to travel.  ok, this analogy has gone too far...

what I'm trying to say is that RA is confusing, scary, and forever.  I will have this disease forever.  when I write that all the emotions of day one diagnosis come flooding back.  it's hard not to feel hopeless, isolated, alone, exhausted, and scared.  this is not how I envisioned my next __ years, and it's still taking some getting used to.

I do trust my doctor and his straight-to-the-point way of doing things, and we are working together to find the perfect medication cocktail to not only deal with the painful symptoms, but also to stop the disease progression.  I already have some permanent deformities, but Dr. J. is hopeful that we will be able to stop any further damage, and I feel blessed to have a confident and capable doctor.

so that is my RA diagnosis story in a nutshell.  it's been about six months since the fateful call from Dr. B., and those six months have seen lots of ups and downs - physically and emotionally.  I have to be very aware of my emotional state as I can find myself in a depressed slump and stay that way for far too long.  I'm actually trying to break free from such a slump right now, and with the support of my wonderful husband, family, and friends, and the faithful presence of my loving God, I know I'll be able to see brighter days soon.