This blog was initially published on Kelly’s website in 2019 and has been updated and formatted for SpineNation. This is the first of a three-part series chronicling Kelly’s journey having a thoracolumbar fusion with discectomy and multiple laminectomies. The photographs were taken by Eliza Daniels Photography in Middle Tennessee. The photos resulted from a partnership with Vanderbilt University Medical Center to allow Kelly to record her pre-and post-op journey.
Waiting room purgatory
It feels like 90% of the time I spend at doctors’ offices is actually spent in the waiting room and not receiving exams, tests, and scans I go there for.
Often, the waiting room furniture is incredibly uncomfortable. Even at fancy-pants hospital clinics for brain and spine patients, with ques in the 400+ range each day, the chairs are awful. Ironically, chronic pain and spine rehab patients spend so much of their lives in the most uncomfortable seating. I’ve walked into a clinic with pain levels at 3 out of 10on a scale of 1-10. By the time I get through all of the waiting and exam, my pain is an 8, and I may be in tears.
Most of the time, it’s because there is no lumbar support in the seating. There are wooden chairs with a seat and a high back, nothing to support the part of your spine that needs it most. If I’m lucky, there’s a cushion. I’ve walked into new doctor’s offices praying that there were cushions on the seats of the chairs. I find myself more often than not, hunched over and half asleep, probably looking like a junkie nodding out. That’s how I imagine I look; that’s how I see myself judging other people before I knew what it was like to live like this.
There was a time in my life in which I didn’t know how much waiting room chairs mattered. There was a time when I didn’t have to pray for seat cushions or ask that we are seated only in booths when we eat out at restaurants. I didn’t have to walk into my favorite eatery, holding my breath and hoping that the two comfortable dining booths would be available. I didn’t feel so resentful when I would see just one person taking up an entire four-person space with the only comfortable seating in the house.
I try not to feel resentful because it’s not their fault that sitting on metal or wooden chairs feels like someone is ramming a steel rod through my spine, from the bottom up. How would they know? Maybe they’re a Spoonie, too. I don’t know.
I shift in the chair, at times hunched over, sometimes doing glute squeezes to keep my piriformis muscle from locking up. Sometimes I try to stand and stretch and do glute squeezes. But in the days and months leading up to my thoracolumbar fusion, I didn’t have the strength to hold myself up for very long, and my legs were unstable.
I would nearly fall but catch myself much more often than I admitted to anyone. I didn’t want to say out loud that I couldn’t grip things as well. It was all because of the rupture in my spine. It took years to find, so it grew into a sizeable calcified mass that crushed my spinal cord. I didn’t want to tell anyone that it felt like I was holding something firmlybut that objects keep dropping out of my hands.
I don’t want to add one more worry to the list for my loved ones.
Finally, we were called back to the clinic.
The misery doesn’t stop here, unfortunately. Some nurses act resentful if you want to lay on the table rather than sitting in another uncomfortable chair. They don’t want to have to be bothered with changing the dressing on the table between patients. I get it; nurses carry a considerable workload. My workload is carrying my body through the day and surviving.
Some nurses are very kind, but the exam tables aren’t built for comfort; they’re made for utility. You have to get creative when you’re a Spoonie, find ways to make it work. Pull a chair up over here; prop your legs up on a laptop case with pillows stacked on top that your best friend stole from those other patient rooms down there, and hope this can get you through the next twenty or thirty minutes.
I often found myself hoping that the pen the nurse gave me with the chart and paperwork that I’d have to fill out would write upside down. I’d already used up all of my spoons in the waiting room, and I’d still have a trip to get food and an hour-long car ride home to look forward to.
Oh, you have to go back to the waiting room.
Yes, I’ve done my pre-op exam and education class, but now I have to get all of my bloodwork done. It’s the same waiting room — the same chairs. No one looks happy in this place.
Thankfully, the line for the phlebotomist is usually moving more quickly than the line for everything else. But I hate the phlebotomist. I have nothing against them as a person, I’ve just met them, but I hate having my blood drawn.
No, it’s nothing like getting a tattoo. Tattoo needles go under the dermal layer of your skin. That’s as far as it goes. My blood is my life source, and the phlebotomist wants to steal it all. Those 4-6 vials look like a hell of a lot of blood to me.
I also don’t like having things injected into my veins through an IV. I think it’s because of my Complex-PTSD. I don’t like not being in control of what goes in or out of my body. Having C-PTSD complicates being a chronic pain patient, and being a chronic pain patient exacerbates my C-PTSD. It’s a real chicken-or-egg situation.
I appreciate the chatty phlebotomists. The phlebotomists that get it done quickly, so I hardly feel a thing. The phlebotomist for my pre-surgery blood draws was both, and it turned out she was also a Spoonie. At first, she was a bit weirded out by a photographer standing around taking pictures of her doing her job. But once I tell her why she is doing it, the friendly phlebotomist tells me how cool that is.
She told me that it was a blogger, in fact, that helped her to identify and diagnose her endometriosis. She tells me that she started having a period at age 11, and it wasn’t until age 25, after reading a blog about it, that she realized what was happening. Doctors had always blown her off. “You just have really bad periods,” they’d said. (It would turn out this was foreshadowing for my own medical journey.)
It took 3.5 hours, but it was finally time to go.
My best friend and my boyfriend followed me around that one medical trip for three and one-half hours. From the waiting room to a patient room, back to the waiting room, then the lab, and the waiting room again.
I had my spine education class, blood was drawn, vitals recorded, and height and weight measured and noted. I beat myself up over gaining back so much weight over three months leading up to this process; I was on ordered bed rest. I pre-registered for my surgery the following week. I received a special pass-card that I am to present to the hospital admitting department on my operation day.
I signed paperwork agreeing that I am responsible for whatever part of the hospital bill that my insurance wouldn’t cover. I thought in a whisper to myself, “We’ll just throw it on the pile.” This was to be my fourth spinal surgery in 10 months.
With that, the day comes to an unceremonious conclusion. My partner and my best friend followed slowly behind me or right next to me. They know I’m negative spoons and that it doesn’t matter because there’s no getting around the human business of eating and driving home.