It’s no secret that my health is bad, because I’ve written about it on various occasions. And the more I tentatively flee the medical closet, the more I continue to second-guess my attempts at forthcomingness and/or “inspiring others”. Does my being open about my own melees really provide a fellow source of camaraderie… or just make me a whiner? Recently, when faced with the plight of posting pics of my most recent hospital stay or keeping it “mum”, my soon-to-be-husband and I realized a simple fact: this is our life. This is not an occasional bout with the flu, or a tumultuous round of colds. This is it… this is our existence… and this is what it looks like – for better, and often for very worse. No matter how we try to spin it (and believe me, my snarkholic self tries) or conceal… when no exaggeration or pity-seeking or attention-hogging is involved, why not just be who and what we are? In the end, it always “is what it is.”
That being said, where the heck have I been for the last 2 – 3 digital weeks? If you hadn’t noticed my mysterious disappearance from Makeover Momma (lie to me and say you have), it’s time for a little catch up, a little sharing, and a little stating it as it simply is. But since a picture tells a thousand words, I decided to share a few products of our hospital-induced boredom first….
My bedside necessities: an accapella for lung clearance, a throw up baggie, and a mirror (since I had to wash my face in bed. Well, and I’m vain)….
The best visual EVER in the morning, after many nights of snoozing alone and 3 AM breathing treatments…
My nemesis: Pulmonary Function Tests. These show the capacity with which you’re able to use your lungs in daily life…
To be honest, nearly two weeks in the hospital left me pretty burnt out, and writing has been even more strained than normal. Maybe the hardest part for all of us was knowing that there is likely no end in sight. When dealing with a chronic illness of this nature, doctors don’t wave you farewell with a “Get better soon!”, but rather a “Hope to not see you for awhile!” You make friends with your respiratory therapists, slew of specialists, nurses, techs and staff, because you know you’re going to eventually see them again (although we have a “bet” that it won’t be for at least a year!)
Before I pass over the writing wand to my fiancee- who is stepping in with his own verbiage when mine has truly failed- I will state the facts for the curious sallies trying not to pry too far on Facebook. Here are the facts: I am working with the Cystic Fibrosis Center out of Chapel Hill, North Carolina, but seek immediate treatment in my own state. If I get a really bad infection (which happens increasingly more), I get IV antibiotics and fluids through the poracath in my chest, and eventually may do inhaled antibiotics as well. Since each round of ‘biotics takes at least a week, this makes hospital visits even more arduous and long. Keeping weight on has become increasingly hard (my teeange ballerina self would have loved this), so I’m supposed to eat double or triple the calories of an average person just to process nutrients. Unfortunately, that is easier said than done with a host of GI problems, a nasty cough-to-gag reflux, and a steady stream of necessary meds which make food seem non-existent. At the time of admission, I had lost 10 pounds and counting in a month… and I didn’t need to lose a pound to begin with! Yuck.
My new routine is more intensive than it was before I entered the hospital, and this is a good thing because it means we have a good coarse of action going forward. I begin every morning with a huge amount of pills and inhaled albuterol, followed by more pills and inhaled hypertonic saline before lunch, and repeated twice again until bedtime. In those interims, I also must use a lung clearance device to prevent new infections (we chose the green “pickle” machine shown in a photo above, instead of the infamous shaky vest- since the former has been proven to work a bit better than the latter). I have to use that ten times every hour, everyday. If I want to eat? Let’s just say a complicated regimen of perfectly timed codeine cough syrup, followed by soft palatable food, superseded with cough-encouraging physio is in order. On top of that, I’m finishing up testing to see if I finally need oxygen at night, which I’d been denying and ignoring for some time (ew). My most recent PFTS showed 55% lung function, which- although not as bad as we thought, since it’s the same as the last time when I was not battling an infection- is a huge decrease from 86% a year and half ago. Basically, I need to follow my treatments, therapies and medical regimen with flawless precision if I want to prevent any further drop for the foreseeable future. A lot of pressure, right?
Ok, my turn at whining is officially done (though really, I’m just stating facts), and now it’s JL’s turn. Mind you that I never- repeat, never– allow guest posts on the website because I want it to have it’s own universal, unique and consistent voice. That being said…. don’t you kind of want to know how a dude processes the worst? And since he has literally saved my life on a few occasions when I couldn’t breathe (no kidding)… let’s just say he was the respiratory therapists’s best friend too. Now they’re trying to recruit him!
If you want to read the beginning of his short story on the matter (stay tuned for more updates from both of us at later dates), just click here…. Make sure to leave him a comment too!
Health Sound Off: Please share. What do you think of this journey and my sharing? TMI? What do you think of JL’s side of things? How can you relate?