Welcome to BreathSentence. My name is Jessica, and this is a blog about my experiences navigating the world as a twenty-something, generally, but a twenty-something laydee with Cystic Fibrosis, specifically.
Cystic Fibrosis in 30 Seconds
Cystic Fibrosis is "an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food," (courtesy http://www.cff.org/AboutCF/).
The most common perception of CF is as a respiratory and digestive disease, but the fundamental problem - failure to transport sodium chloride (salt) between cells properly, if at all - can cause many other secondary and tertiary problems that aren't as widely understood; similarly, the respiratory and digestive problems themselves - and treatments for them - can set off chain reactions, causing other problems that, while not specific to CF itself, further complicate life with the disease.
Support or Cesspool?
One of the more unfortunate aspects of CF is that it is quite dangerous for CF patients to spend time together in person, due to the likelihood of spreading bacteria that I call "elitist" - they are unlikely to infect people without CF at all (with the exception of those with severely compromised immune systems), and cause little-to-no noticeable issues if they do; however, they spread easily between CF patients, and can colonize and wreak havoc, sometimes fatally so, very quickly.
As a result, I knew very few other people with CF growing up; the handful that I did know, it would be more appropriate to say I knew of than actually knew personally, and were mostly other kids I ran into on occasion at my CF doctor appointments. While it was healthy for me in some ways, simply because I wasn't exposed so personally to the difficulties faced by (and unfortunately, the deaths of) my peers, as I grew out of adolescence, I began to yearn for real-life examples of how others were balancing independence, relationships, and young adulthood generally with the increasing degree to which the disease played a part in day-to-day life - and subsequently, plans for the future.
I began this blog shortly after graduating college in December of 2008. I stumbled upon Piper Beatty's blog, which led to other blogs, and eventually discovering a wonderful online community - I was exposed to a whole world of real, honest adults with CF, as varied in personalities, goals, pet peeves and everything else as any other group of "normal" people. I was able to learn so much from them about navigating adult life with CF, from relationships and employment issues to different treatment approaches to similar problems - and continue to do so.
About *this* Blog
Since I like to talk - a lot; I actually enjoy writing; and I have a major case of monkey mind, I started this blog as a personal outlet to help me process things. Initially, I primarily wrote about health-related issues, and used it to keep people posted on the crazycakes episode I now refer to as the Sinus Kerfuffle of Near Death 2009. As with life, however, health-related problems don't just affect my body, and regular-life issues are often intertwined and complicated by the CF side of things. And sometimes, I just need to post pictures and stories about my dog to remind myself - and all four of my readers (HI MOM!) - that I'm an actual person, soul, spirit beyond my genetically gimpy physicality.
So this isn't a "health" blog. But it's not just a "life" blog, either. It's not a diary comprised of whiny misgivings, unrequited love and dreams, and little-black-raincloud "why me"s. I don't dot my "i"s with hearts. But if you're looking for sunshine and rainbows every day all the time, you won't find that either. Because *life* isn't sunshine and rainbows all the time, and sometimes the cup is half full, but with sputum. (Yes. I went there). Sometimes it's half empty, but hey - it's still tequila. (That's my signature line. Use it, abuse it, but please don't steal it in print).
I put this stuff out there into the big bad internets because I think it's important that people see that patients are people, too - and we can do some pretty badass, amazing things; but we aren't heroes just because our genes are screwy, and being sick and being a day to day ass are not mutually exclusive. And sometimes, the people who most need reminding of both ends of this spectrum are patients ourselves. So basically, this blog exists primarily to respond with a resounding "YES" to the haunting thought of, "Am I normal? Does anyone else think this way?"
That said, I welcome comments. I may not respond to every one (though I try to), and my responses may not be super timely (because unfortunately, writing this blog is not my day job). But having a little "me too!" back every now and then goes a long way towards keeping me out of an institution that involves padded rooms and daily crafts - whether you interpret that as prison or a psych ward is up to you.
If you want to "comment", or ask me something, or tell me off, or some combination of all three, but don't want to do so publicly, by all means feel free to shoot me an email at breathsentence AT gmail DOT com
Warnings
I curse sometimes. It ebbs and flows. If this bothers you, I apologize. Kind of.
I am...shall we say...verbose. I don't write every day, but when I do, it tends to be long, and it tends to be meaty. I recommend against trying to read on a smartphone, but obviously, that's just a suggestion. I'm the same way in real life. I've given up trying to change it.
I do a lot of stringing-together-of-words-with-hyphens and other such nonsense, both to make up words without confusing people, and to sort of convey how things sound in my head-reading-voice. Like that.
There are very, very, very few topics I consider off-limits. So few, in fact, I can't think of any to list off the top of my head. And I take requests. So if you have questions, or want me to write about something (from deep, crazy, philosophical HUH?! stuff, to silly, "what's your favorite ____?" stuff) ask. I probably will.
Lastly - I can get kind of science-y. And since bad science - or bad explanations of good science - make my aneurysm coils unravel, I try to be pretty thorough when I have to explain the medical, science-y side of what's going on with me (or whatever I'm talking about). I'm getting better about just linking science-y words to an article I find sufficiently accurate and succinct in its explanation (and yes, that sometimes includes wikipedia), but it's a work in progress. Relatedly, if I ever get my science wrong here, please please pretty please comment, email, or send smoke signals to let me know.
