And even though I am “in the grey” (presently diagnosed with a clinically similar but not genetically parallel ailment), lungs are often synonymous with this sort of affliction.
If you’ve read or watched “A Fault in Our Stars,” then you know the cliché image of the beautiful young girl toting around her oxygen tank. And frankly, I have not only known that girl to be true and loved John Green with a passion, but also have been that girl before.
Lesser known lame-lung appearances in the media have included that chick on “Bates Motel,” who never seems to cough, the skateboarding dude on the short-lived but somewhat addictive “Red Band Society,” or many flyby shout-outs on “Grey’s Anatomy” or “Private Practice” or … well, any other Shonda Rhimes concoction.
Some of these appearances have been significant in busting stereotypes, like “Red Band Society,” which depicted a black male with cystic fibrosis (common sad untruth: “black people don’t have CF”). Unfortunately, while one stereotype may be fractured, others often persevere.
Many people don’t realize these depictions focus only on one aspect of health (hello, cannula), forgoing all other impacted organs. For many, our gastrointestinal system or our pancreas or our sinuses are worse than our lungs, presenting a spectrum of symptoms and somatic stereotypes circulating in our society.
For myself, my GI has become the bane of my existence lately (not to be confused with being the Bane of my existence, which sometimes Vog masks and C-Paps totally achieve).
Whether it was the chicken or the egg, I’m not exactly sure. Did my stomach problems add to my lung problems in the past? Did the resolution of those problems create more problems along the way? I don’t know (I have doctors for that), but I do know that it’s been a long and winding road to get where I am. (That could be an intestinal pun, but I digest.)
At the moment, I am dealing with a plethora of paralysis issues, meaning that my intestines and small bowel don’t work as they should to break down food. The last month has led to a handful of partial obstructions alone (thankfully, they have subsided slowly, because of the handy dandy joy of stopping feeds and starving myself), but this only compounds the issue.
Getting regular nutrition is essential to fighting off infection and not being a hangry-evil-rage-momster. Digestion is needed to actually absorb food, and a swollen hard suffocating lump can make that thing called breathing quite difficult. And although we often think of obstructions as only bowel-related, sometimes they can be from intestinal inflammation, static food, or surgical shock as well.
After my fundoplication (which greatly improved my lungs), I couldn’t eat solid foods for six straight months while everything healed. If the military ever wanted to breed psychotic killing machines, I would suggest they follow this regimen for the same length of time, and they’d be right on track.
My psyche took a hit in not being able to enjoy the psychological pleasures and comforts of food, and since then, I’ve struggled with the balance between listening to my fractured body and “just wanting more than two bites of salad, dammit.” I realize that my stomach has been surgically altered many times and that constant mucus swallowing can add to the traffic jam, but regulating your mind when your body is starving is a cruel fate more often than not.
I have tried every trick in the book: pureed foods, gently cooked foods, no dairy, no gluten, no taste. I eat many small meals throughout the day, normally focused on fats and protein, as well as doing J-feeds at night, in an attempt to stay even slightly functional. If I have a long day or I’m traveling and can’t get to my feeds on time, I often give in on the mental front, fiendishly eating more than my stomach can handle, thanks to hunger from dancing or mothering or existing … and I regret it for the next week.
Although my doctors have plans in mind (another post for another day), the fact here is this: Digesting the idea that these diseases are so much more than just lungs is critical to receiving proper care, compassion and support.
Maybe just one person who gets that by reading this weekly column on this particular website will help move that message forward.
We may often be depicted as merely lame breathers by the media or on TV, but the reality is that our organs often take turns acting up — and that’s just the way the cookie crumbles.
Now pass some Creon, friend. Because this girl really wants to eat that cookie!
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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