If you asked me five years ago what I'd be doing today, I would have no doubt given you a cookie cutter answer. I'd be a nurse practitioner at CHOP, happily married to Steve, living in our beautiful home with our precious daughter Vivien (named after Vivien Thomas, of course), and in talks about giving her a baby brother or sister.
After a rough start in life that wasn't supposed to see me past my 2nd birthday, by the time I was six I had four heart surgeries, one would have thought I had my fill. Words like oxygen requirement, lasix, congestive heart failure and digoxin were common when it came to me. Yet being the stubborn thing that I am, I proved them wrong and lived through it.
I had a couple of slip-ups that were a normal part of teenage rebellion, and college was tough for me at first (wait, I had to study?), but by the time I graduated nursing school with honors, I already had a job secured at the only place I've ever wanted to work. I had this. One by one, my dreams were coming true.
The first time I laid eyes on Steve, he was walking into the bar with five girls, and I somehow wooed him with my
By the time I returned to work from our honeymoon, I was just so happy. There's really no other way to explain it; I felt that all the lousy things I endured in the past were behind me, and I was just scratching the surface to achieve all the things I worked so hard for.
Not long after, mysterious rashes appeared on my face, and I didn't think much of them. As they progressively became worse, and a surgical resident at work looked at me like I had ebola, I figured it was time to get it checked out.
And there the journey began.
So, where was I five years ago today?
I was sitting on the examining table in Dr. E's office, after almost 6 months of non-stop tests and doctors, as she said the words I already knew, "Marla, you have systemic lupus."
I zoned in and out as she explained that I was one of the 2% diagnosed with SLE who is ANA negative, and how she wanted to get on top of this before any major organ damage was done (famous last words). I watched in a daze as she filled out slip after slip on her prescription pad for medications I was supposed to start taking immediately and tests I had to get.
Part of me was relieved I finally had a diagnosis, but I remember sitting there thinking that things were about to drastically change.
And boy, did they.
I think how Steve and I were cheated out of the "honeymoon" phase, and how we never got a chance to just be. That I went from happy and healthy to spending the majority of my time in doctor's offices and taking meds. We were supposed to be that newly married couple getting our groove on non-stop, and instead I was getting shitty diagnosis after shitty diagnosis. How neither of us knew how to help the other cope, getting angry and pushing each other farther apart almost leading to the demise of our marriage. It got ugly. Real ugly. We both made huge mistakes, and I'm not proud I let it get there. But, slowly it got better. At times you need someone (i.e., a really good counselor, and a friend to take you in for several weeks) to remind you why you got married in the first place.
I think how I'll never experience pregnancy, something that I'm still coming to terms with. I used to think about Steve and I sitting on the couch, as I scream at the TV, "what the fuck was that?!?!?!" while watching a Flyers game and Baby D. kicking with excitement. We'll never hang ultrasound pictures on the fridge, have a reveal party, or do a pregnancy photo shoot. I hoped accepting this would make it easier. It doesn't, and I just get bitterer when friends announce their pregnancies, post articles ripping in to childless couples, or someone asks me why Steve and I live in a giant house if we don't have kids.
Yes, I know pregnancy announcements and tasteless articles are not aimed directly at me, but it doesn't make it any less difficult. And hell, what's it to you that my lipsticks have their own bedroom?
I think about that day I found out I got the position in the Cardiac ICU, what I call my big Haley Joel Osment, Pay It Forward moment. I felt like I came full circle, from patient to nurse. Even though I spent the first 9 months there so nervous I wanted to puke, I loved it. And I worked damn hard to get there.
When I get better (or at least don't have multiple treatments every week), I know I won't be able to return to my position. Aside that there's no way I could run around in an ICU, Dr. M. doesn't want me to work in direct patient care because of all the immunosuppressants I'm on. It kills me. I earned a paycheck doing something I loved, and because of this stupid disease, I can no longer do it.
And then there's the obvious, how the disease and treatments have changed my physical appearance. Even though the rational side of my brain knows that all this weight gain is from the prednisone, it's extremely tough to look in the mirror and be disgusted with what you see, and I despise having no control over this aspect. I could exercise like Jillian Michaels, but until I'm able to stop taking the steroids, the weight won't budge. It's wrecking havoc on my 5'2 frame; the extra weight literally hurts.
Left: 2008 less than a week before my first lupus rashes appeared
Right: 2012 on 40mg of prednisone
OK, you have to laugh at the picture on the right. The DMV lady taking my picture that morning pissed me off about 2 seconds before she snapped the photo. As if I wasn't already miserable enough.
So yes, five years ago today, my world changed drastically. If someone told me then that today I'd be childless, fat, in pain all the time, not working, and need to take 16 pills a day just to get out of bed every morning, I'd call bullshit.
I think I've earned the right to complain now and then, but I really try not to. I can't change the cards that I was dealt, and I doubt the magic pill to cure me will be discovered any time soon. So the best I can do is put on the comfy maternity pants Brie gave me, apply some red lipstick, wear Beyonce the wig, grab my leopard print pimp cane and strut my stuff.
HAPPY FIVE YEAR LUPUS ANNIVERSARY TO ME!!!
Linking up for Random Wednesday, Whatever Whenever Wednesday, and Wednesday Gratitude.