My Story (Part I)

Chronic illness is such a huge part of my life now, it seems to lurk in the background of everything that I do and every decision that I make, so when I look back at my life it’s hard not to think of things and identify them as having taken place in my “pre-lupus” life or my “post-lupus” life. I was officially diagnosed with Systemic Lupus Erythematosus in the spring of 2015, but my health journey really began somewhere towards the end of 2010/early 2011. I have heard people say that a chronic illness diagnosis can feel like a death; and for me that couldn’t be more true. It’s like grieving the death of the person you once were, and I’m pretty sure I went through just about every stage of grief at some point along the way…

After graduating high school in 2009 I decided that a traditional college experience wasn’t really for me, so I started working as a nanny to a family with three girls and taking college courses at my local community college. For the first few semesters I would get up and go to my classes and then head from school to the girls school to meet them when they got out. We would head home, I’d help them with homework, play, make dinner and do bedtime routines, then I’d head home get some sleep, get up and do it all over again. I was pretty content in this until I took my first political science class and fell in love! I ended up getting a great summer internship with my state’s Emergency Management Agency, which led to a full-time job. So rather than school during the day/work in the afternoon into the evening, my schedule became 8.5 hour working days/full college course load in the evenings. In what little spare time I had, I was pretty active; I loved to hike, do yoga, paddleboard, go out with friends, etc.. It was after a year and a half or so of this schedule that my health problems started.

Towards the end of 2010 I was in the process of finishing up my associates degree and was weighing my options when it came to a four year school; I was determined to finish my degree, bank some more working experience and then make the jump from the state government to a federal law enforcement agency (the goal was US Marshal’s Service or ATF, but that’s neither here nor there). I started having excruciating joint pain in my hands and because I worked at a computer so much I made a trip to Patient First to see what the heck was going on. My doctor that night was BEYOND thorough; she did an x-ray, but then she asked me a bunch of questions, that didn’t make sense at the time, and said she wanted to run some labs. I thought nothing of it and when the scans can back clear she sent me home with a hand brace, the recommendation of taking breaks during the day when I would have pain, and to take some OTC painkillers. A few days later, I was driving from work to one of my evening classes and I got a phone call from this same amazing doctor (whose name I wish I could remember, but…brain fog) who said after noticing a rash on my face and speaking with me about some other symptoms, she thought it best to check my ANA – which had come back positive – and that it was possible that I had early onset rheumatoid arthritis or something called lupus. And so the journey began….

**(Stay tuned for part II and possibly III…I thought it best to break this story up a bit)