As I begin typing this entry it feels as if this has been a long time coming.  I’m a 34 year old single girl living in the Chicago ‘burbs.  I am the oldest of three girls.  Life, as far as I recall, was pretty peachy-keen up until my youngest sister was born in 1981.  I still remember it: our Dad calling the house on a Friday night to interrupt “Dukes of Hazzard” to tell my little sister and me that we had a baby sister (we had been hoping for a boy to name Dave…great name, Dave).  The two of us were home with grandma, quarantined with the chicken-pox.  The pregnancy was hard on my mom, as my youngest sister was past her due date and a big baby.  Prior to 1981, my mom used to jog in the mornings, play tennis, garden, and tackle all kinds of other activities with a youthful, intense, lively spirit.  That mom never came back from the hospital with the new baby in 1981.  My mother was plagued with a wild variety of health issues.  My grandparents stayed on with us for a while to help ease the chaos of the three kids which seemed to be too much for my mom to bear.  She was only 32 years old.

I’m a little foggy when I actually try to recall the span of years from 1981-1987.  I can remember my mom telling us kids about being diagnosed with R.A. and explaining why her hands and feet were so swollen.   I remember braces, immobilizers, slings, and crutches becoming commonplace.  My dad hired a Swedish nanny to assume the household duties and take care of my sisters and me.  We spent a lot of time with our chain-smoking nanny, our dog, and doing all the activities that kids in our town did – keeping us involved as best as possible.  At some point, our mom had a nervous breakdown.  This is something that I only slightly remember.  She just was away for a while.  Later, she said that she just couldn’t cope with all the stress of not feeling well, not being a mother the way that she thought she should be, and the pressures of the disease playing itself out in her life.  At the time, as a little kid who was just so dang sick and tired of mom-sick-with-this and mom-not-feeling-well-with-that, I was just frustrated and angry.  Now, as a 34 year old R.A. warrior, I’m empathetic.

Back in the 80’s my mom received gold shots, took methotrexate tablets, downed prednisone, and popped ecotrin aspirin like candy – all to little relief.  The side effects were even more devastating.  The prednisone was an absolutely necessary treatment, yet she puffed up and lost the pink warmth tone in her skin.  The aspirin tore up her stomach and contributed to ulcers.  She began to suffer osteoporosis.  Any little virus or bacteria laid her out, and often advanced to pneumonia.  She coughed so hard from that she used to crack ribs.  She had bouts of kidney stones as calcium was leeched due to medications.  A large shoe box of prescription bottles overtook a shelf in the kitchen cabinet, and soon, the pill’s bills were swallowing up my parents’ money faster than my mom swallowed them.  Despite the drastic shift from normalcy to this, my mom did her best to manage three little kids.  My dad was a champ through and through, and often I wonder how many other men would have endured as he continues to do through this very day.

I took up tennis early in life, but it wasn’t until the mid 80’s that I started to play more seriously with private lessons and competitive groups.  It felt good to be active.  I was a tom-boy as a kid.  I played with boys and girls, roller skating, bike riding, building forts, jumping across creeks, playing tag, and leaping from a swing.  I have always enjoyed what seems to best be described as an abundance of enthusiasm.  This contributed to the growing impatience I had for a mom who was so completely “slowed down.”  A third through sixth grade kid just doesn’t register what “chronic” means.  My mom was always sore, always sick, always run-down.  My mom did what she could, but R.A. certainly limited her in ways that I can only now appreciate.

I can remember thinking – no promising – to myself that I would never let some disease take me down like that.  Now, I also remember something that my dad said, and I’m sure that has been said by many others before, “the only time you can really know what you are made of is when you have to get up after getting knocked down.”  It was something along those lines.  I’m not my mother.  The times have changed, our medicine is better and has fewer side effects, there is more information available to me, and I’ve seen a road that I don’t want to go down.

So why am I down that road?  I’ll discuss how I was diagnosed later…that is a fun story.  You would think it would be obvious, right?  I’ll also discuss the things that I am doing to hang on to my tennis.  I have nodules in the palm of my hand which, when the racket’s grip presses against it, sometimes feels like I have broken a bone in there.  I still hold onto my dreams of climbing mountains again.  A little over four years ago I climbed in the Andes.  I’m not one of those ice-pick swinging climbers, but I love a good hike.  I’ll also discuss the debate of my “biological clock.”  I’m pretty disappointed with my genes and not too sure that I want to pass the bad ones on, or that I’ll be healthy enough to be a good parent…someday.

I invite any comments or links as I know that I am not the only person with R.A. trying to eek out a living, managing doctor’s appointments, dealing with feeling like crap the day after I give myself an injection, mourning that I can’t wear two-inch heels anymore, and dreading taking the first ten steps in the morning (ouch!).  I’m sure I’ll come back to many “mom” stories too as she continues to struggle through her days.

In the meantime, as it is a Saturday, that means time to load up the needle.  Happy weekend.

Advertisements