Aside from having severe digestive issues, Cystic Fibrosis has drenched my airways in a thick layer of mucus that has a tendency to ruin my day at the worst possible times. Usually, I can keep things from going south. But sometimes, like my bowels, my airways just decide to eject some colorful sticky stuff for no discernible reason other than to spite me.
A simple sneeze has a chance of triggering a tsunami of blood and mucus, even if my lungs are supposedly clear. I regularly have to clean my motocross helmet because riding my dirtbike is like a vest treatment on steroids, causing me to hack all sorts of fun stuff over the interior of my helmet's face guard. Any sort of cardio exercise has that effect on me, and I've sort of learned to just not care about what others think when I hack things up in front of them. I can't control it, and if I swallow too much mucus, it can disrupt my digestive tract for the day. So, I just have to own it.
Cystic Fibrosis, at its core, is caused by my body's inability to properly process salt in each of my cells. Because of this, my body is dehydrated. The Cilia cells within my body (cells we all have that help move things along, from food in our intestines to mucus in our airways) are almost all dead, because they require salt to stay alive. But since my body is pretty void of salt, there isn't enough to keep the Cilia cells alive. On top of that, my mucus is extra thick and sticky because it's so dry in my body. There isn't enough salt to keep moisture inside me, which means my mucus will be very thick and sticky, rather than thin and watery like everyone else's. If I don't keep up with my treatments, this mucus can and will build up very quickly, turning my airways into the perfect breeding ground for all sorts of fun stuff to breed. If my collection of super-bugs doesn't kill me first, I may literally suffocate to death on my own mucus.
I may appear healthy now, but that doesn't mean my airways are completely clear of mucus. In fact, my lungs are always congested, just not enough to be noticed often. If I exercise particularly hard, I'll usually start wheezing before most people in my shape will. It's not a sign of illness. It's just a sign of Cystic Fibrosis. If I'm sick, that wheezing will be much more pronounced, and will probably be accompanied by a lot of coughing. However, most of the time, when I'm sick, I don't even try to work myself out so hard. I know that I could cause more harm than good if I work myself out too hard when I'm sick. However, being completely bedbound is not so great either. Even when I feel my worst, I have to get out of bed, and at least take a short walk up and down my street. Otherwise, the mucus in my lungs could build up and I could develop Pneumonia.
But, whether I'm sick or well, I almost always have some amount of blood and snot exiting my airways into the outside world on any given day. It's just the way it is.
Sometimes, I'll cough something out that's so impressive and intriguing that it attracts the attention of others. I'm one of the few people that can cough out literally all of the colors of the rainbow in one quick breath, so of course, this strange ability of mine will attract some unwanted attention. It's almost as impressive as my ability to eat 10% of my weight in one sitting and still look (and probably be) underweight.
When I get sick, or am recovering from a recent bout of illness, my mucus production is kicked into overdrive. People who don't know me have accused me of being addicted to chew because of how often I have to spit when I'm sick or recovering from illness, even though I've never actually had chew before and probably never will. Similarly, I've been accused of being a smoker due to my gruff voice and/or coughing, depending on how sick I am, even though I can't stand the smell of cigarette smoke from a mile away. And, those who know me either don't smoke at all, or don't light up anywhere near me. Even vape pens are questionable, so my older brother Ryder doesn't take hits if I'm around.
This reminds me, two years ago, Ryder and his best friend were down from Canada for a few weeks. Ryder's best friend saw that I did nebulizer treatments twice a day, and he had no idea what it was or what its purpose was, and he was too afraid to ask. A couple days later, while we're all sitting inside playing video games and waiting out a heavy thunderstorm, Ryder's best friend pulls out his vape stick and puts it up to his mouth. Before he could do anything more, Ryder literally slaps the vape stick out of his friend's mouth and points to me saying, "You do that, she dies!"
"But why?" Ryder's friend asked.
"Because of her lungs." Ryder replied.
"But she smokes like twice a day!"
"What!?"
"Y'know, the compressor thing she takes a hit of for like 20 minutes straight each time?"
"You mean the nebulizer?" Ryder practically shouted, "Yeah, she smokes medication twice a day! That's so much different than vape juice."
"But I thought you said her lungs couldn't handle stuff like that." Ryder's friend argued.
"The medication she breathes in is specifically made to help her. Vape juice, on the other hand, is not made to help people breathe."
"But..."
At this point, Ryder was baffled by just how genuinely confused and clueless his friend really was. I was too, but I kept quiet while I let Ryder deal with his friend. Ryder's friend decided he couldn't win the argument, but I don't think he ever fully grasped the concept or purpose of a nebulizer. Ryder's friend however, did approach me later on and asked, "So, do you think you can smoke other things out of that? Like alcohol?"
That's by far, the best question someone has ever asked me. Turns out, according to Google, you can smoke alcohol out of a nebulizer, but smoked alcohol can literally melt your brain and cause serious respiratory issues, so I'll never try it, or let anyone else try it. That's just got bad news written all over it.
However, I'm asked stupid questions all of the time. Most of them are the usual, "So, is Cystic Fibrosis basically Asthma? I have Asthma, so I think I know what it feels like to have CF." and "So, what does mucus taste like?". I can tolerate them, but most of the time, I can't resist to answer their questions sarcastically.
For the most part, for the same reasons I don't elaborate on my bowel issues with most people, I don't usually tell people why I have such glaring breathing issues but remain perfectly healthy without the help of an oxygen tube. It's just not worth my time. I have better, more important things to deal with than a random idiot on the street. I've really mastered the art of not giving a damn about what other people think of me, because my survival honestly depends on that. I've been bullied and discriminated against my whole life for things I cannot control. Instead of wasting my time and energy trying to validate myself to someone who clearly doesn't care to learn or understand something new, I've learned to just ignore them. The world would be a much better place if everyone just learned to ignore the idiots that populate the earth. Unfortunately, the world is literally run by idiots, and it will always be that way. That's just how humans work. Stupidity knows no bounds.
In some ways, I actually appreciate the idiots in the world. I have a tendency to depreciate myself for being unable to do some things, such as figure out the copying machine at work. But, when I run into someone who is actually unintelligent, it really puts things in perspective for me. Sure, I may be technologically challenged at times, but at least I'm smart enough to accept that I don't know everything, unlike the alarming number of people who believe they know everything. I'm willing to learn new things and admit that I'm wrong when I am. At the same time, I'm also willing to fiercely defend myself and my positions when I need to, especially if I'm being challenged by someone (who has never been a licensed doctor) who thinks they know more about Cystic Fibrosis than me.
Nothing drives me more insane than when someone who has no idea what CF is tries to tell me how to deal with it. Even my doctors have said some pretty stupid stuff in the past, and learned the hard way to keep their mouths shut if they think of something that just doesn't sound completely right. But, unlike my doctors, some people just don't know how to shut up or admit defeat, or most importantly, make up for it.
