Luck Fupus

A lupus blog…

Take these broken wings and learn to fly…

You know that inevitable question during a job interview, “So tell me where you see yourself in 5 years?” I detest that question, and I always seem to find myself scrambling my brain to come up with an adequate response because I’m certain “hopefully still employed and not smoking crack in some dark alley,” would no doubt be frowned upon.

Over 6 years ago I was asked that very question when I interviewed for a position in the Cardiac ICU, only there was no hesitation in my answer. I would be well into my new career as a Pediatric Nurse Practitioner (in the Cardiac Center!) as I was more than halfway through the NP program at Villanova, and hopefully the work experience in the Cardiac ICU would help lead the way. I figured my husband and I would have at least one child by then, and perhaps another on the way.

Two years later, I was working in the Cardiac ICU, and finally felt like I wasn’t going to simultaneously vomit and wet my pants at the thought of taking care of a critically ill patient. I was finding my place on the unit and loving the path I was on when the Great Lupus Flare of 2012 hit.

It’s been 4 years today since my last shift worked in the Cardiac ICU. What was supposed to be a six-week leave of absence to get my flare under control and start new medications has turned into 4 years on long-term disability. 4 years since I’ve clocked-in at the start of a shift, taken care of a patient, and walked out the doors of CHOP feeling like I made a difference in those 12 hours (or feelings of despair, but hey, unfortunately that’s the name of the game in the medical field).

Over these 4 years I’ve had 5 surgeries, 2 cardiac catheterizations, tried many types of medications, some of which failed me terribly, gained 65 pounds from steroids in less than 6 weeks, lost 55 pounds over 2 years (seriously, I can’t get rid of those last 10 fucking pounds!), had all of my hair fall out, started a wig collection that rivals Lady Gaga’s, walked with the assistance of a (pimp) cane for many months, lost my ability to become pregnant, had both my breasts removed (and got fabulous fakies in their place!), and had a really big scare that I was going to be diagnosed with pulmonary hypertension.

It’s been… busy. Downright scary at times.

After receiving my official lupus diagnosis in 2008, I spent the first 4 years doing everything possible to ensure lupus didn’t define me, mainly not making my health a priority; I still went out with my friends (drinking) as much as possible, I went from a stressful nursing job to an unbelievably stressful job that came with survivor’s guilt, I lived on a diet of coffee and Cheetos to get through night shifts, I picked up overtime, and insisted on doubling up on courses at Villanova. I’m not saying I made myself sick, but, perhaps if I had taken better care of myself at that time instead of hiding from the disease, I wouldn’t still be out of work. It’s far too late to play the blame game at this point.

I get down when I see nurse friends from CHOP who I was in school with are now a few years into their new roles as nurse practitioners, whether they stayed at CHOP or moved on to another facility. I’m thrilled for them and their accomplishments, but it stings a little. Oh, fuck it. It stings. A lot. That should be me, too.

In the two years that my blog has become big (and by big, I mean more than Brie and my mom read it), I’ve taken many shit situations and turned them into fertilizer. Lemons into lemonade (lemon drop martinis if I was feeling extra celebratory). I turned my frown upside down.  Whatever analogy you prefer.

It’s taken some time for me to accept that this is my life now, that the path I laid the groundwork for took a completely different course. And I’m OK with it. I still want to curl in a ball, throw my nursing books against a wall or cry when I walk past the empty bedrooms in my house. But as I’ve said many times before, it’s gotten easier, and I love what I’m doing.

Yesterday was the start of Lupus Awareness month, so I’m embracing my newfound role as a patient advocate and making more noise than usual. Six years ago, sitting in that interview I had no idea this is that is where I’d be. But, perhaps there was a reason for all of this, and I’m doing exactly what I was meant to be doing.

Blackbird quote- Luck Fupus

 

 

Comments

  1. Whitney says:

    Good for you! Lemons into Lemonade for sure.

    I think…we find the paths we are supposed to in life. In spite of the shitty things that happen to us. I don’t believe ‘everything happens for a reason’ or that nonsense. I think bad things happen…and God (or whatever higher power works for you) gives us the strength to persevere and have lemon drops (because I love vodka). I think you are a very strong bad ass chick I am happy to ‘know’ via the internet.

  2. Holli says:

    I just love you! I fricking hate that you have lupus though. I did start following you and “met” you though because of lupus. I wanted and needed to understand Lupus more because of my mom. She’s suffering and struggling so bad . I hurt for her.
    This is not the plan you had. No one says ” I’m going to make a career from my chronic illness”. BUT, you are tackling it with every bit that you have and you’re doing good. You’re a voice and advocate for patients and that’s huge!! So proud of you. Xoxoxo

  3. Kelli says:

    I’m so glad you’re embracing your newfound role, life rarely works out as planned and sometimes people don’t know how to make the best of what they never expected but you are a pro at it! xo

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