Waiting room purgatory (Pre-Operative Trip)
Photo Credit: Eliza Daniels Photography
Special thanks to Vanderbilt University Medical Center for granting me permission to have my best friend/photographer follow me along on this journey. This will be my third neurosurgery in ten months, but my first at Vanderbilt.
Arriving at 100 Oaks Vanderbilt Health Center
About 90% of the time that Spoonies spend at doctor's appointments, tests, and scans is actually spent in the waiting room.
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 10 on a scale of 1-10. By the time I get through all of the waiting and exam, my pain is at an 8, and I may be in tears.
Walking into 100 Oaks with my walker. I never guessed that at 37 I would need this type of mobility aid. Life happens.
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. You're lucky if there's a cushion. I've walked into new doctor's offices, praying that there were cushions on 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.
Back to the waiting room
Nathan and I at the registration desk
I'm not suffering alone. My boyfriend-turned-caretaker spends a lot of his time in these waiting rooms, too. I don't know who it's worse for, honestly, because I have to feel the pain, but he has to look on as I suffer, and there's absolutely nothing he can do. I shift in the chair, hunch over, do glute squeezes, sometimes I try to stand and stretch and do glute squeezes. But these days, I don't have the strength to hold myself up for very long, and my legs are somewhat unstable.
I nearly fall but catch myself much more often than I admit.
He worries about me enough already, and I don't want to make it worse. Secondary trauma is real.
Every time I drop something or bump into something in a room of our home, he runs, panicking, and yelling, "I'm coming! Are you ok?!" Often he's yelling and panicking so loudly that he can't hear me yelling, "I'm ok! I just dropped this thing!" It takes him a full minute to catch his breath and realize that I'm fine, and he picks up whatever it is that I dropped and goes back to whatever he was doing (usually working.)
I don't want to say out loud that I'm afraid that I can't grip things as well because of the rupture in my spine. I don't want to say that it feels like I'm holding something firmly but that objects keep dropping out of my hands.
I don't want to add one more worry to the list.
Finally, we are called back to the clinic
Nathan and I, in the spine education class
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.
I had to switch to my walker, because the chair in the patient room was worse than the waiting room
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 your partner's 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.
Hope that the pen they gave you with the chart and paperwork that you have to fill out (the paperwork you've filled out approximately 1,000,000 times already, for various offices and hospitals) writes upside down because you've used up all of your spoons in the waiting room, and you 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.
Nathan and I in the waiting room, again. This one has decent chairs, hooray!
Thankfully, the line for the phlebotomist is 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.
Actual footage of waiting room purgatory
I also don't like having things injected into my veins through an IV. I think it's the CPTSD. I don't like not being in control of what goes in or out of my body. Having CPTSD complicates being a chronic pain patient, and being a chronic pain patient exacerbates my CPTSD. It's a real chick-or-egg situation. Also, maybe it's the Murderino in me, but those chairs with the arms that stick out, look like an executioner's chair to me.
I appreciate the chatty phlebotomists. The phlebotomists who get it done quickly, and I hardly feel a thing. This phlebotomist is both, and she's also a Spoonie. So, while at first, she's a bit weirded out by a photographer standing around taking pictures of her doing her job, once I tell her why she is doing it, the friendly phlebotomist tells me how cool that is.
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 said. (This is medical gaslighting.)
It's been 3.5 hours, but it's finally time to go
My best friend and my boyfriend-turned-caretaker have been following me around or three and one-half hours. From the waiting room to a patient room to the waiting room, to the lab, to the waiting room again.
I have had my spine education class, I've had my blood drawn, vitals have been taken and recorded, and height and weight measured and noted. I have beat myself up over gaining back so much weight over the past three months. I have pre-registered for my surgery the following week and received a special pass-card that I am to present to the hospital admitting department on the day of my operation.
I have signed paperwork agreeing that I am responsible for whatever part of the hospital bill that my insurance won't cover. I think in a whisper to myself, "We'll just throw it on the pile."
Nathan and I, slowly exiting 100 Oaks
With that, the day comes to an unceremonious conclusion, and my partner and my best friend follow slowly behind me or right next to me, knowing I'm negative spoons and that it doesn't matter because there's no getting around the human business of eating and driving home.
It's going to have to get way worse before it gets better.