I have a really, really hard time asking for help or even accepting help. Recently, my mom put out a blog post for work detailing how she got where she's at today. Her writing confirmed what I'd feared for years. The stress I put on her, especially when I am sick, is immeasurable. These days, we have the money and resources to fight CF to the fullest extent, and know a lot more about it than ever before. But seven years ago, my mom had less than $4,000 to her name, had just broken up with Clarke, had little to no help in raising me and my little brother, and I was sick constantly.

Doctors told my mom that my illness was just the natural progression of CF. Eventually, I'd end up with my own unique handful of antibiotic-resistant superbugs, also known as Burkholderia Cepacia Complex (BCC), and I'd either need new lungs or die. If my mom didn't move across town to live next door to her best friend, I probably wouldn't be here today. But her story is a constant reminder of how much CF affects everyone else in my life, and that rips me up, because I don't want people to share my pain.

I'm really good at hiding my pain and faking a smile. It just became instinctual, because I used it so often to get through school. It wasn't until my latest brush with death that cracks began to form. My experience with Pseudomonas in 11th grade really brought me to my knees, and reminded me that it wasn't always a good idea to fake it through the pain. Had my mom not noticed my pale cheeks, weak muscles, and dramatic weight loss, I would've attended school until I literally fell over dead. Sometimes when I was walking down the halls in that school, I seriously thought my legs would give out from under me, especially since my locker was on the second floor while many of my classes were on the first floor. But, like always, I just faked it to my peers and teachers. I didn't want them to worry about me. 

As horrendous as that bout with illness was, it was really the wake-up call I needed. By the time I'd gotten over round two of the illness, I became much more open to my family about my health. Sure, they weren't always the best emotional support, because more often than not, my mom and my grandparents would just burst into tears. My dad, who grew up with a heavily disabled father, seems to be the only person in my life who can remain calm even during my worst health crises. But at least my family listened to what was going on, despite their emotions, and watched over me to make sure I didn't die. Everyone did their best, and while we had our screw-ups and misunderstandings, I managed to survive and recover. 

Still, those several months did not leave me entirely unscathed. It actually left me very afraid for awhile. Sure, I never showed my fear to people, but I was always wondering what would happen if I caught Pseudomonas, or anything like it, again. I didn't want to repeat the hell I'd just gone through. My anxiety surrounding fresh water and hospitals went through the roof. My heart still skips a few beats whenever I get too close to a stagnant pool of water, or catch a whiff of hand sanitizer, as that stuff smells just like the hospital corridors I walked down so often while I was sick. 

But my history with PTSD extends far beyond my most recent fight with Pseudomonas. I've struggled with receiving tight hugs or being trapped in enclosed spaces like elevators for as long as I can remember. When I was little, and didn't have the coping skills to keep myself still during uncomfortable medical procedures, teams of doctors, nurses, and even my own parents had to hold me down, while I kicked and screamed, during medical procedures. Also, I've spent a lot of time in MRI machines and small hospital rooms, where the feeling of being trapped is inescapable. I still need my parents to hold onto one of my legs while I get MRI's done to remind me that I'm not alone, and there is a way out of there, so I don't lose my mind completely. 

I'm usually stressed and anxious at some point in the day, everyday. My fingernails have definitely suffered because of my anxiety. It's very difficult to remember the names, functions, and dosages of all 50 pills I take. I'm also constantly worried about coming into contact with something that might contain a superbug or two. I never put my wet laundry into the dryer (my mom does) or reuse wet towels, since those things are prime breeding grounds for bacteria such as Pseudomonas to grow. I also keep my bathroom squeaky clean, and use a lot of bleach to scrub the bathroom to make sure no mold or bacteria can grow. I even have a bottle of hydrogen peroxide on my bathroom sink to wash my hands with, just to be extra sure I'm not carrying anything around.

I'll often go around the house and wipe down the surfaces with anti-bacterial wipes, and use heavy-duty dish soap on the counters, just to make sure everything I touch is safe from bacteria that can severely harm me. Sure, I do occasionally still get sick, but that's just a part of life. I just don't want my house to be a superbug mating ground like so many places are. I want to be able to be comfortable in my own home, as I'm sure everyone wants to be comfortable in theirs.

I think my mom definitely appreciates my house cleaning rituals. Obviously, I can't get clean up every ounce of clutter by myself, but I can disinfect everything to make sure nothing harmful is growing anywhere. Basically, I pay my rent by keeping the kitchen clean, keeping all of the surfaces disinfected, and killing the big-ass wolf spiders around the house. My mom is terrified of them, so if she finds one, even in the middle of the night, I have to kill it. They're the biggest wolf spiders I've ever dealt with, and they sound like a chip getting crushed when I kill them. I cringe every time.  

Unvaccinated people are not allowed in my house. My mom relaxed this rule when she was still dating a guy called Matt, until Matt's unvaccinated son came down with the flu, strep throat, and a few other things that seriously could've ruined my life. I caught the poor kid's sinus infection, but thankfully nothing else. I was still not allowed back home for three weeks, and spent those three weeks between my grandparents' and Clarke's. During those three weeks, I was on an antibiotic called Bactrum to kill the sinus infection before it could turn into anything worse, and also on Tamiflu for 10 days to hopefully prevent any flu symptoms from showing. I'd also been vaccinated, though that doesn't always work for me due to my compromised immune system. However, at the very least, the vaccination reduces the symptoms and severity of the real illness if I catch it. 

The Bactrum ruined my digestive system completely despite my attempts to take the stress off it using probiotics and a modified version of my super-lean whole-foods diet, and the Tamiflu made it hard for me to sleep. Needless to say, I did not have a good time, and it took me awhile to recover from everything and get back into a routine at home. However, I do accept that as much as the side-effects sucked, getting the flu and/or allowing my sinus infection to get worse would've been a lot harder for me to deal with. The side-effects of those medications subsided in just a few days after I got off them, while it would've taken me weeks or months to recover from another severe illness. Since then, my mom and Matt had a falling-out over this incident and broke up, and now my mom's anti-vax friends aren't allowed anywhere near our house. Lesson learned. 

People do get frustrated by my strict sanitary rules. They just don't understand what the big deal is, and don't care to sit down and listen to my story. Perhaps, if they saw what a simple cold can do to me, let alone a severe lung infection such as Pseudomonas, then they'd understand things better. Beyond that, I recognize that much of my behavior stems from PTSD, and want people to understand that so they don't take things personally. I'm not looking for people to help me with my day-to-day life when I'm sick. I just want people to understand so they can back off and let me heal. Trust me, CF frustrates me way more than it frustrates anyone else. 

I wish I could go to the freshwater swimming pool like everyone else without worrying about getting sick from the water. I wish I could have a freshwater fish tank or a pet reptile. I wish I could tolerate the weather better so I could join everyone else outside and have a good time when it's very cold, very hot, very wet, or very windy. I wish I could spend more than a day away from a power outlet, and travel with only one suitcase. I wish I could get a job working construction or on a farm without suffering severe consequences from the dust and hard work. I wish... I wish... But, the reality is, I have a condition that is incurable, and if I don't take care of it properly, I will get very sick very fast, and die. 

If a cure for Cystic Fibrosis came out tomorrow, I don't care if it's a surgery or a pill. I will accept it in a heartbeat. Before shit really hit the fan, I used to see CF as more of a blessing than a curse. But since it almost killed me in 11th grade, when I could fully grasp and understand what was really going on, my mind has changed. CF is much more of a curse than a blessing, however I am extremely healthy for what I have, and am even more grateful for my health.

People mistake my health as proof I can do everything they can do, then get mad at me when I tell them I can't do something, such as go swimming at a freshwater swimming pool. Then they just get even more upset when I offer to take them to a saltwater swimming pool, because apparently they can't grasp the fact that the bacteria that can seriously wreck me cannot survive in salt like it can in damp, salt-less environments. If you put a freshwater snail in some water from a lake, it will be just fine. But if you put the same snail in some water from the ocean, it will die. Replace that snail with Pseudomonas, or any CF-specific super-bug bacteria for that matter, and the same concept applies. It's not that difficult to understand.

I'd have a much easier time dealing with CF if people didn't constantly get upset at me for things I cannot control, or for things they do not understand. Like I've said over and over again, I did not ask for Cystic Fibrosis. I do not like Cystic Fibrosis. If I could cure CF today, I would. But, I was born with it, and chances are I will just have to deal with it for the rest of my life. I'm well aware of how people with CF most often die, and am determined to not make the same mistakes. If I say I can't do something, there's a very good reason behind why I can't do it, and the conversation should just end right there. I know more about my condition than most doctors do. In fact, I've had to lecture new doctors and medical students before, because I could explain CF better than most of my best doctors could ever dream of.