A note before we get going – this story is not connected to the Who is H? stories. I didn’t post last week because I didn’t have Internet. July is Juvenile Arthritis Awareness Month, so this story is connected to that.
If you’re new to Short Story Sunday, you should know that what happens is I put the first paragraph or so of the story, and then put the rest under the cut (Read More) so that you don’t have to read if you don’t want to. For previous Short Story Sunday episodes, check out the page titled “Short Story Sunday.” If you follow me on Twitter, you can see the teaser quote I post every week on Saturday.
hands shook, but her mouth remained drawn in a thin line. She answered the
nurse’s questions tensely, but the nurse wasn’t offended. The past June marked
Maggie O’Haly’s twentieth anniversary as a nurse – and her career as a patient’s
loved one lasted for even longer – so she knew. She knew more than the average
person how this young girl felt.
your full name and date of birth,” she said smoothly, pulling out the hospital
bracelet to check with her patient’s answers.
Maria de la Rosa,” she recited with a practiced ease and a slight accent that
eluded her normal speech. “And my D. O. B. is August 15, 1996.” Maggie quickly
subdued her automatic reaction to pity the girl. Poor baby, she couldn’t help but think. Just 15 years old.
“Well, looks like you’re you.” Sofia’s lips curved into a slight smile at that,
but it didn’t reach her eyes. Maggie attached the hospital bracelet to Sofia’s thin
but puffy wrist, and her patient’s hands shook a bit. Looking into Sofia’s
face, Maggie asked, a little softer, “Are you nervous?”
across Sofia’s face at first, but it didn’t last. “A little,” she admitted, her
voice low. “I’ve never had an infusion treatment, other than morphine and
fluids at ER visits. And that’s different.”
cloud and brightened up the cramped infusion room a little. Sofia was the first
patient of the day, so the other two armchairs were empty and the room wasn’t
overflowing yet. For now, no one else could hear their conversation
sat by Sofia for a moment. “I know it’s scary. I’ve been an infusion nurse for
fifteen years, and an ER nurse before that, and I know even the strongest
person can be scared. And my brother has arthritis, so I’ve seen everything
he’s gone through over the years. But I’m going to do everything I can do make
this easy for you, okay?”
away to the nearby countertop. “So on that note, we’re going to start you off
with some other meds first.” She grabbed two syringes and returned to her
patient, setting one down on a tray. The actual IV line already sat snug in the
crook of Sofia’s elbow, but the tubing of the IV line rose up from the
connecting hub, and there was an injection port to allow medications. Now that
they were down to business, Sofia looked interested to hear what was going on.
one of the syringes filled with a clear liquid. “This one is prednisone. I know
you’re not familiar with it at all,” she added with a hint of sarcasm and a
smile, and Sofia laughed.
in my life,” she replied, matching Maggie’s sarcasm and rolling her eyes. A
little softer, she added, “Damn steroid.”
response, Maggie just laughed as she connected it to the port. Once that was
through, she picked up the other. “This is Benadryl. Like the steroid, it’s a
preventative measure in case of side effects. Ever taken this one?”
than sarcastic. “I’ve taken it for some allergic reactions before. It makes me
Maggie nodded, but kept her eyes focused on her task. “I’m not surprised. This
is the same thing as the O. T. C. pill, but much stronger, so don’t be
surprised by that. You’ll know as soon as it kicks in.”
counter where medications lay out to fill out some paperwork, Sofia sat
patiently. It barely took three minutes before she felt the Benadryl. It rushed
to her head, and her vision blurred. Her head spun, and she sat back against
the comfortable leather chair. “Oh my God,” she said softly. “It does the same head-rush
thing Morphine does.”
paperwork. “That’s what I hear,” she responded cheerfully. Her eyes narrowed
slightly. “Are you okay?”
so. This dizziness and exhaustion – that’s the Benadryl, right?”
start the drug, I need you to let me know if you feel out of the ordinary or
really not good, okay? Especially since we don’t know how you’ll react to it
than Sofia expected for her to nod in agreement. “Will do,” she added,
attempting a thumbs-up. She let her eyes flutter close.
patient, Maggie turned to her mini-fridge. “Do you want water or juice to take
the Tylenol?” she asked. “I have apple.”
reply. A little concerned – but not much; Benadryl straight to the bloodstream
tended to take a lot out of people and this was normal – Maggie grabbed a small
plastic cup with two white pills in it and a bottle of apple juice. “Here you
go, hon.” Sofia managed to open her eyes to take both and easily knocked back
both pills at once.
the chair and closed her eyes again. Maggie made a few notes, checking her
clock to keep careful tally of the times medications were given. Leaning over
her desk, she paused for a moment to look at her patient.
the teenage girl in its depths, especially since she sat curled in a ball. Her
long black hair rested in a loose braid around Sofia’s shoulder and ended
midway down her torso. One arm had a blood pressure cuff wrapped around the
upper portion, and the other had the needle and tubing sticking out of the
elbow. Her bronze skin was slightly pale, most likely due to exhaustion, pain,
and anemia. Although Sofia’s mother – who dropped her off earlier that morning,
but had to work as a nurse in another area of the hospital – was above average
height, her fifteen-year-old daughter barely reached 5’1”.
leggings and oversized, short-sleeved shirt under a similarly large sweatshirt probably
did more than just emphasize how small she was. Most likely, it also hid
enlarged, red joints that would be warm to the touch, and allowed them room to
swell without constricting against the clothing. From her chart, Maggie knew
there were at least six such joints, and she could see some where the
sweatshirt had been rolled up to allow the IV. To those not familiar with
Juvenile Arthritis, the sight of such swollen joints could cause concern. To
those familiar with it, like Maggie and Sofia, it was normal.
pulled herself back to her job. She walked back over to the counter and took
the bag filled with a clear liquid. “Okay,” she sung. “It’s twenty minutes
since I gave you the pre-meds. Time for the big one!”
bit at being disturbed, moving one hand to rub at her eyes. “Let’s get this
party started,” she groaned.
right to sleep,” Maggie promised as she walked toward the pole behind Sofia’s
chair. She clipped the bag to it and started to connect it to the hub and get
the drip going. “I’ll get you a blanket, we can put the chair into reclining,
and you can rest.”
put in her headphones and turned on her iPod.
connected and working well, Maggie smiled. “You might even sleep through the
entire thing,” she added. “You’re only due for an hour or so. Not bad. It could
be worse – some patients are in for six hours.”
that. “That sucks,” she whispered.
just settle down. Make sure that your arms are accessible, though,” she
reminded. “Between the IV and the blood pressure, you really don’t want the
machines to beep obnoxiously at you.”
in the chair. As the chemicals dripped at a steady rate into her bloodstream,
on their way to binding and controlling cells, she promptly fell asleep.
this short story, I write about a teenage girl with Juvenile Arthritis. JA is
an umbrella term for the over 100 kinds of autoimmune and inflammatory
conditions that develop in children below the age of 16. Although arthritis
usually affects joints, it can also involve the eyes, skin, and
gastrointestinal tract. There is no known cause for most forms, and there isn’t
scientific evidence supporting many people’s claims that foods and allergies
can cause it. Sometimes there might be a genetic predisposition. There are at
least 300,000 children with some form of JA, and July is Juvenile Arthritis
Awareness Month, hence the timing of this story. Some elements that I left out,
though, are the impact of JA on families, what it’s like managing these
diseases, the frustration of doctor’s appointments, and the basic limitations
that JA imposes. Infusion treatments are one kind of treatment, and since I’m
going in for my next infusion the day after I’m first publishing this story, it
felt appropriate to focus on that. There are many other kinds of treatments,
including pills and injections. I did, however, try and capture the fear that
accompanies trying a new kind of medication, both in terms of what the
medication does and how it’s received. For more information, you can learn
about JA and how to support research and advocacy from the Arthritis Foundation
and the Arthritis National Research Foundation.