I Am a Middle-Aged Drama Queen

arrowAnyone who walks away with seven stitches and a near perfect arrow-shaped scar should have a good story to tell, right? Attacked by my recliner doesn’t seem to qualify, though. But that’s what happened. Really, I wouldn’t make up something so lame.

I blame the prednisone, of course. It’s made my skin so thin and papery that staring at it too hard can cause a tear. That’s why a simple scratch that should have left a red mark at most resulted in a 3-inch gash topped by a chevron-shaped skin flap.  I didn’t even know I’d injured myself until I saw blood dripping on the carpet. One look at the wound and I knew I needed stitches.

Luckily, we have a wonderful urgent care just five minutes from the house. Proximity is key not just for convenience — it also means if my portables run low, my husband can dash home for a quick fill. The doc was fast with his patch job, though, so we managed the outing on what I had with me. Still, the whole incident was full of drama — drama that we are all growing quite tired of.

Bum lungs and bad-ass meds keep me teetering out here on the brink. A little stumble becomes a broken ankle and surgery. The sniffles morph into pneumonia. An extra half slice of pizza leads to an evening of difficult breathing followed by 20 minutes of roller coaster sats and projectile coughing at bedtime. Drama Queen is not my style and it’s a role I inhabit reluctantly. But maybe that’s the lesson here. Let the drama flow through me and over me without letting it define me.

Unfortunately, no matter how Zen I become about it all, everything that happens to me affects my family, too.  If I need to go to the ER/urgent care/doctor, someone has to drop everything and take me. If a tube becomes unplugged, someone has to untangle the snarl and reconnect it. If my tank runs dry, someone has to fill a new one for me. Caregiving is emotionally, mentally and physically draining work — especially for those who take care of patients like me, dancing on the edge.  I have the easy part: breathing, hoping, waiting. But my family? They’re the ones who deserve medals, parades and their own feast days.



PLM Interview

PLM_LogoRecently I was interviewed by the patient-support website PatientsLikeMe.com about “Life on the List”.  You can check out the full interview here.

I love PLM because it provides a single, comprehensive location where I can track everything from my meds to treatments, hospitalizations, and even how I’m feeling today. The charts feature offers a running history that I can review as needed with my medical team.  Plus, the forums allow me to connect with other patients to ask questions, share ideas and encouragement, and offer feedback on a wide variety of pf-related issues.

A key component of PLM is data sharing between researchers and members. Researchers frequently send out requests to members to take part in questionnaires, interviews or surveys.  And, I can give them access to my charted info for further research and analysis.

If you haven’t visited PatientsLikeMe.com, it’s well work a click.  They have communities for a wide variety of diseases, illnesses and conditions — even “rarities” like pulmonary fibrosis.

Tethered II

Today marks week #6 on the transplant list and my disease continues to progress. Everything slowly is getting more difficult, usually requiring more energy and breath than I can muster. As a result, I confine my bipedal forays almost exclusively to Pulmonary Rehab and the 6-minute walk I must endure at my bi-weekly clinic appointments.  Around the house, rather than hoofing from one room to the next, I rely on my trusty chariot — a zippy 3-wheeled scooter that miraculously squeezes into even the tightest alcoves and closets.

The scooter is truly a Godsend, affording me the kind of speed and agility I haven’t experienced for a very long time. It saves my breath for the really difficult maneuvers, like going to bed or getting a drink. But it also adds a whole new dimension of insanity to my ongoing issues with snarled cannula.  On my feet, it was no big deal to reverse direction and walk back around any obstacle my cannula encountered. Now, that same action often requires a deftly executed three-point turn, the occasional ding to cabinet or wall, a terrorized dog, and a bit of mild cursing.

Most annoying, however, is the constant battle between 50 feet of cannula and three spinning wheels. Toss in a persnickety “Y” connector that joins cannula to concentrators, and you have a disaster that plays out daily. Oxygen tubing is not cooperative. It does not lie flat or slide along in a nice orderly fashion out of its neat coil. It prefers to bunch and gather, especially around corners, ripping itself free of the Y connector on one end, or my face on the other.

But my cannula really shows its fickle ways while I am riding down halls, around furniture, and through rooms. It wraps itself around tires, knots up under the axle, or gets itself stuck in the tiny “anti-wheelie” wheels at the rear of the scooter. Often I will be jetting along down the straight-away (hall), only to have the cannula ripped from my face as it catches briefly under a wheel. I’ve tried coiling the cannula as I go, threading it through the arm rest to keep it free from spinning tires, and readjusting the tubing to keep it out of scooter range. But nothing is fail-proof.  I still hold out hope that some clever engineering student at MIT or Caltech will lay down their latest Robot Wars entry long enough to design a workable hose reel for oxygen tubing. They will be an instant Rock Star among gaspers everywhere!

Though cannula and scooter may not be the best-suited cohorts, together they provide a sense of freedom that I cling to everyday. Unlike Pulmonary Rehab where I can do 30 minutes on the treadmill (supported with 40 lpm of oxygen, constant monitoring, and a snail-like pace), taking three steps at home leaves me gasping. The scooter opens up the world (okay, the house) to me. With it, I’ve been able to enjoy a few sunny afternoons on the deck and get my own lunch — small but very important victories. If the call doesn’t come soon, I will likely finish out my waiting in the hospital. But for now, the scooter is helping to keep me firmly planted at home where I can ride to the end of my 50-ft. tether and view the landscape from a new perspective.