I'm not sure if there is a lot of benefit to me to going through the motions of what I have to do daily and weekly for my CF. I like to educate people – I mean, writing 31 pieces is obviously intended to do just that – but sometimes it feels as though I'm just spending time talking about something I can't change.
What's the goal, then, when I explain my daily routine? I suppose to use my platform to be honest and transparent, and sure, maybe, educating others means they may feel sorry or sympathize with me. Ultimately, I hope people empathize with people that suffer from health issues.
Every morning, I do an inhaler and three nebulized medications. The inhaler, albuterol, is a bronchoilator, intended to open up the airways so the medications can reach more of my bronchii. The nebulized meds are done as follows: hypertonic saline, pulmozyme, and an antibiotic. The hypertonic saline is a mucolytic, which means it's intended to thin the thick mucus in my lungs. The pulmozyme, also called a DNAse, cuts up the DNA in white blood cells, which helps to thin the mucus even further. Lastly, I do the inhaled antibotic. I cycle Colistin and Cayston. These are cycled because it helps to "confuse" the bacteria, to hopefully reduce the likelihood the bacteria will develop resistance to them.
While doing all of these nebulized treatments, I'm actively doing my chest physiotherapy, the vest, to break that mucus even further. I feels wonders better after doing my treatment in the morning. (Since starting Orkambi, I've felt generally clearer. In the years before starting Orkambi, I noticed my chest was feeling very constricted before doing my treatments in the morning.)
In addition to actually doing these treatments, I also have to be sure to keep the nebulizer cups sterile and to clean them daily. All in all, the process is usually 45 minutes to an hour every morning and night. It's a burden that we get no respite from, which weighs on me quite a bit here and there. I've written about how this stress can force me to feel compelled to rebel, but then I remember how sick Lyss felt whenever she was sick, which quells that urge pretty quickly.
I also have to take medications every morning, every night, and every day when I eat. The medications I take in the morning are several vitamins, Orkambi, an anti-inflammatory, a medication that helps my liver, and an acid reflux medication. When I eat, I take enzymes called Creon. These are comprised of several enzymes: protease, lipases, proteases and amylases. Together, these help to break down fats, proteins, starches, carbs, and whatever molecules my body can't break down itself.
Each week, on Monday morning, I spend time preparing my pills for the week and, during Colistin months, preparing my inhaled antibiotic. Fortunately, I can kill two birds with one stone by doing this while doing my Vest, but still, it isn't particularly fun.
Having these types of side tasks on top of all the physical burdens of CF can feel like insult to injury which is why I struggle sometimes. But embracing it, searching for normalcy, being hopeful, and having a good mental health plan are the keys to making it day by day.