Off day
“Oh no!” I say out loud. The TV mutes, all eyes on me. “I forgot to get my meds.” My phone reads 7:34pm. Thirty-four minutes past the time the pharmacy closes. A wave of grief knocks me back leaving me dripping in guilt. Again, again I miss the mark. Late last week, I unexpectedly ran out of two medications that I could have sworn I had backups for. Then, this week, I ran out of yet another medication that is part of my day-to-day transplant medication. After the gut wrenching realization last night that it happened again, I hopped on…
Unweaving stress
I flatten my palms together on my lap and turn my body to the left in the gray, plastic chair in the white and gray exam room. “While we’re talking about the abscess, is it common post to have bone loss? I mean,” I look down and flatten my palms onto the top of my thighs, applying pressure and moving them toward my knees at a snail’s pace, “I am pretty sure this was going on before the transplant. I met with the periodontist a year ago? Maybe two years? I can’t remember, but this was definitely happening before.” “I…
Sunday
I step onto the treadmill in bare feet, loose ripped jeans, and a Bengals tee shirt. I hold onto the bars and count backwards from six as I exhale and backwards from three as I inhale. I read somewhere that counting backwards is supposed to help stop your mind from latching onto anxious thoughts that might be bubbling up. I am short of breath due to a mixture of some light anxiety about exercise induced shortness of breath and from getting up out of my office chair and walking the three feet to the treadmill. I squeeze my eyelids shut…
Pulmonary function tests: round 7.
It doesn’t get easier. I have been listed for a lung transplant for ten months. Within those ten months, I have completed six pulmonary function tests. Prior to being listed, I completed at least the same amount if not more. The type of test and the chronology in which the tests are administered are relatively standard regardless of facility or technician administering the tests. Not only are the testing protocols the same across different hospitals and facilities, but for the most part my results have remained stable. Clearly the results are not what one would consider good given I have…
Exercise, no thanks. Vacation, unobtainable.
I aimlessly scroll through Instagram and see friends and strangers out and about maskless. People are traveling. People are hanging out in groups indoors. Plans are made, vacations are taken. Remote work is done in AirBnBs exploring new places in off-hours. Beautiful mountains, shining seas, white beaches, deep forests, and city skylines flash before my eyes. I think about where we could go for a break from being home for over two years straight and realize that even with COVID cases dropping and feeling more confident going to in-person medical appointments, I am still tethered to oxygen. Even if we…
Wound clinic heels.
This is a memory from 2019 when my heels were at their worst. Well, really all of the time my heels were split open was the worst. So, I guess this is more or less a glimpse into one of the scenarios with my heels and the first time I went to the wound clinic. I join the queue in front of the elevators. The mix of patients and doctors are either scrolling through their phones, stifling yawns, or sipping on coffee. It is early. I don’t want to be here but unfortunately one month after my wedding my heels…
Transplant check-in. 192 days and counting.
I lift my left arm to check the time on my watch. It is 4:56am. Jimmy is curled up on my back under the covers, keeping me warm. The temperature has dropped again but it is hardly noticeable with this tiny bony furnace in the bed. I stretch to grab my phone from the nightstand, unplug it, and set it on the side of the bed just slightly tucked under my pillow. I push the button on my trilogy machine to stop the air from pushing into my lungs and pull off the mask. My mouth is so dry it…
Pharmacy, please.
I sit on the brown leather couch in the office and take the first sip of my latte. It is perfect. Perfect temperature, perfect amount of Ghirardelli salty caramel sauce, and perfect amount of foam. I crack open The Seven Husbands of Evelyn Hugo by Taylor Jenkins Reid, eager to unravel the mystery behind the relationship of Evelyn and Monique. How are they connected? Why did Evelyn choose her? I turn the page and flatten out the paperback before I pull my coffee cup back up to my lips for another sip. It burns. Not from the temperature but because…
Three years
I inhale the sweet, woodsy scent of the new candle I purchased from Maison Louis Marie. It sits on my desk and flickers gently every so often, its light bounces off my laptop, vase of fresh flowers, and picture of me and Sam. The scent fills the room with a clean and crisp aroma, a mix of luxury and comfort. I lean back in my chair. legs stretched under my desk, and sigh. My heart doesn’t hurt as much right now. My eyes no longer feel like they are going to burst at any moment. My arms and legs and…
The Lung and the Restless
Listed. We sit on the couch watching rerun episodes of Bob’s Burgers and recap our day at work. We both work remotely but still the weekends hit the same. It is Friday. Between work and the gauntlet of wrapping up various doctors appointments there is a palpable tension in the room. We are both waiting for my phone to ring. We anticipated it coming through all day: the call from Tonya, my pre-transplant coordinator. She is set to meet with the board today to determine whether I can be actively listed on the waitlist for a double lung transplant. As…
Activities of Daily Living (ADL) and Lung Disease
The impact of having an interstitial lung disease on my daily life didn’t register until my breathing got worse and my overall endurance suffered. I was keen on turning a “blind eye” on the problem until it got to the point where it absolutely couldn’t be avoided. Losing independence and the ability to perform everyday life tasks due to chronic illness, specifically a lung disease, can be heartbreaking and infuriating. Through the initial scramble of trying to figure out what was happening to my body with my various auto-immune diseases and newly added breathing difficulties, I pushed myself through the pain…
The First Time I Couldn’t Catch My Breath
I pull on my faux leather leggings and zip up the sides. The leggings are high waisted and fit perfectly. I toss on my oversized black fuzzy mock neck turtleneck before twisting half of my hair up in a tiny knot on the very top of my head secured by a bobby-pin. I glance in the bathroom mirror and quickly apply mascara and a touch of “cloud paint” by Glossier on my cheek bones. Today is day two of my new job. With my hair, face, and clothes secure, I sit on the side of the tub to redo the…
Life 