The Exhaustion of Being a Human Pin Cushion

Before every appointment with my renal specialist, I have to get blood and urine testing done. In high school, the idea of having to get an injection used to leave me feeling light-headed, now it’s just standard procedure. But even though I’ve gotten used to it, I’m so sick and tired of this new part of my life as a pin cushion.

If I were to take an educated guess, I would say I’ve had at least 50 needles in the past year and a bit. While I know they’re necessary to keep an eye on my health, I can’t help but feel tired of it all.

Before I left for Europe, I had blood and urine tests, a biopsy and an iron infusion, all within a week. While I know that for some lupus warriors multiple injections, blood tests and other medical testing on a weekly basis are the norm, I have to admit that by the time I got around to the final procedure, I was completely over it.

The thing is, you’ll never see anything but a smile on my face for the wonderful doctors and nurses who treat me. But this is not temporary; it will be like this for the rest of my life. Over the next 20, 30 or however many years, I will be under intermittent medical care of some kind, and just thinking about it leaves me feeling a bit overwhelmed.

In my lifetime, I’ll potentially spend a countless amount of time being treated or tested in one form or another. That’s days of being poked and prodded, being stuck with needles and having to pee into tiny plastic containers. It’s hours of having to wait the required amount of time before I am allowed to leave, and weeks of waiting on results while crossing all my fingers and toes, hoping it’s not bad news.

I’m already tired of being a medical voodoo doll. I’m tired of being pulled this way and that as they struggle to understand exactly what’s happening to me. Tired of endless prescription medications, pill grid boxes organized for the week ahead and the lingering fear I’ll end up back in the emergency room.

But I live in a predicament; I don’t have a choice. If I want the time to live the life I want, I’ve got to sacrifice some of it. There’s no gain without sacrifice. I’ve got to accept that, in my pie of life, a big piece has been removed and divided between doctors and medicine. But giving up that portion means I have a good chance of being allowed to have the rest for myself.

In an alternate universe, I’m sure there’s a Kristiana who lives completely free of lupus and all the chaos it brings. I truly hope she knows how lucky she is. Lucky not to have to worry about biopsies and intravenous iron infusions. Lucky not to look at parts of her body every day and double-take, just in case something seems off. Lucky not to have blood drawn so many times that nurses look at the crease at her elbow trying not to say, “Wow, this one’s seen a few needles!”

I envy her, because she doesn’t live life as a human pin cushion. But even with my chronic illness, I know she envies me, too. At this moment in my life, I envy her for her freedoms, but she envies me for the person I’ve become, the strength I have and that I’ve grown into exactly who we both wanted to be.

The person I could become only through each and every needle, every hardship and every type of adversity lupus throws my way.

This post originally appeared in Kristiana Page’s column “The Girl Who Cried Wolf” on Lupus News Today. 

Thinkstock photo via roibu.