ok. this post isn’t going to be related to cf at all but i don’t really care.
i’m in chicago for thanksgiving, which is where (almost) everyone on my mom’s side of the family lives. and all i really want to say is that i love these people so much, that it almost hurts. i love seeing them, i love talking to them, i love everything about them. so much so that i am giving serious consideration to moving to chicago after i finish my master’s degree, to be closer to them. i love them so much, that if i were in a miss america pageant, or something, and i was in the q&a portion of the contest, and the announcer guy asked me what my one wish for the world would be, i would answer “i wish that everyone in the world could have a family like mine.” no joke.
also. my mom pulled out old home movies from when she and her siblings were little kids. and they are without a doubt the funniest things i’ve ever seen. funnier than arrested development, which i used to think was the funniest thing i’ve ever seen.
alright. it’s been almost 12 hours since i’ve eaten thanksgiving food, so i feel like it’s almost time to load up again. hallelujah turkey.
peace out, playas.
so recently, a lot of people have been asking me if there’s anything about having cf that i hate, or, simply, if i hate having cf. so those are some of the things i’ve been thinking about lately, and what i’d like to share today. (typing that sentence totally made me feel like i should be sitting in a circle with young children because it’s time to share our feelings or something.)
anyways, i’ll start with the first question, which deals with things about having cf that i hate. i have to admit, it took me a long time to think of answers to this. but after a while, the answer juices started flowing. so, what do i hate about having cf? (these answers are in no particular order.) i hate that having cf means that i had to move to a new apartment last week, away from my roommate of 3+ years, because i can no longer climb the 3 flights of stairs to get to my old apartment without feeling like i ran a marathon when i get to the top. i hate that having cf has forced me to cut back on my extracurricular activities and class hours. in high school i could do 8 classes a day, then stay for an hour-long swim team practice, and do homework until midnight. now, i can barely handle one class (4-ish hours) of class per week, and maybe one extra activity. i hate that because i’ve developed cf-related diabetes, i have to carry snacks and insulin and a glucometer everywhere i go. (ok, mostly i hate this because i’m lazy and hate carrying anything more than i have to, but still…) i hate that dealing with everything cf-realated, and trying to be postivie about it, has recently led me to having massive anxiety and panic attacks. like, the kind where i can’t leave my couch, the kind where i have to take medication just to go out in public, the kind that freaks me out if my phone is not physically on or directly near me 24 hours a day. i hate that when i’m not feeling very well, even just a little bit, i can hear the crackles and wheezing in my lungs if i lay very still. i hate that dealing with a chronic illness forced me to mature at a much younger age than most people, and i feel like i missed out on a lot of childhood-related things. not activities, necessarily, sometimes just feelings or emotions. (that one’s kind of hard to describe.) i hate that having cf makes my family and friends worry about me. i hate the i have to wear an ugly medic alert bracelet, and carry around a list of all the medications i take in my wallet because there are too many to remember off the top of my head. i hate that i can eat and eat and eat all day long and barely gain a pound (i know, most people would kill for this skill, but for me it blows). there are probably other things that i hate if i gave it more thought, but for now i think that gives you a pretty good idea of what i hate about having cf.
that being said, i’ll answer the next question. do i hate having cf? absolutely not, and i’m pretty sure i never will. despite all of the things i just listed, and things i haven’t, there’s a part of me, in a very strange way, that feels… thankful to have cf. for one thing, having cf has turned me into the person that i am today, and truthfully, i really really really like who i am (on most days, we all have our moments). i think that having cf has motivated me to have an incredibly positive outlook on life, on mine and in general, and i think that sometimes that’s hard to come by. (or maybe i’m wrong.) the way i have chosen to live my life with cf (and it is a deliberate choice, and a hard one to maintain, because truthfully, it would be so much easier to just not care) has allowed me to prioritize the things in my life in a way that provides a great deal of happiness, and allows opportunities to arise that i might not otherwise come across or feel particularly motivated to make happen. now, anyone who knows a bit about cf, probably knows something about a mortality rate. and i’m not going to go into it very much unless someone wants more details (just ask), and the reason i’m not going into it is because i never think about it. i think that thinking about it is pointless. the one and only way that mortality fits into my thoughts and lifestyle is that i think just knowing about it keeps me on my toes as far as healthcare goes, and it also has created in me a desire to do and see and experience anything that i think will make me happy, or a better person, or have some sort of positive effect on my life. it’s sort of a hard thing to describe… i guess i just mean that i don’t really like to sit around and wait for things to come to me. if there’s somewhere i want to go, i find a way to go there. if i know there’s something that will make me feel really good about myself, i go for it (studying art history, taking time each day to read for pleasure, studying abroad in italy are examples that come to mind…). also, in a weird way, i feel thankful that i have cf, and thankful that i have the strength to take care of it and talk about it, because i think there are people out there who don’t feel the same way i do, and my hope is that by living my life that way i have chosen to, (and by keeping this blog) i can sort of be an example to others- let them know that it is possible to have a life even if it is plagued by chronic illness. (cue motivational music!)
so, while there are definitely negative aspects to having a chronic illness such as cf, i think that ultimately, those negatives have forced me to be a more positive, strong, and focused person.
and i guess that’s the end.
okayyy i don’t really have any more excuses for slacking off on this blog business, so sit back, relax, and enjoy the fantastic, abbreviated, and somewhat boring story of where i’ve been for the last month-ish.
sooo if you scroll down a bit to a couple of posts ago, you will read that i was in the hospital. basically what happened was this: i woke up one friday morning, feeling pretty dandy. by lunch time i was coughing a lot. by snack time i was coughing a lot and having trouble catching my breath (which usually just makes me vomit- gross, i know, but the whole point of this thing is to be open about my life with cf so there you go- vomit). all the coughing and the sudden inability to take a deep breath send me into a state of panic, and i decide i am way beyond taking care of this situation on my own, and that i need outside help, namely in the form of really strong iv antibiotics. so. i call my amazing friend casey, who comes over to my apartment, watches me put a toothbrush and some clean underwear in a bag (which took me a good hour) and then comes with me to the good ‘ol mass. general hospital emergency room, where, unfortunately, i am a frequent customer. i know i can be considered a frequent customer because when i walked in some of the nurses recognized me. a few hours later (which is record timing btw), i am transfered up to a hospital room where i get pretty comfy, because i basically know i’m going to be there for at least a couple of weeks.
the technical term for what landed me in the hospital (this time and the three times before) is ‘acute exacerbation of the lungs’ or some variation of that. in normal people’s language, that pretty much just means lung infection. not like, pneumonia or bronchitis… thing a little bit more serious, and then think even a little bit more serious, because even on a good day, my lungs are pretty junky. and by junky, i mean full of mucus. mmmm.
the standard course of action for treating an acute exacerbation varies, depending on the patient. for me this is what happens: i get two very strong antibiotics via IV four times a day, a respiratory therapist comes once a day to give me an inhaled antibiotic, a physical therapist comes twice a day: during the morning visit she gives me airway clearance therapy by beating on my back, sides, etc. with her hands to loosen the crap in my lungs. during the afternoon visit we go to the exercise room and i walk on the treadmill or climb stairs or do some other sort of aerobic exercise. (sidenote: typically, on the first day of a hospitalization, a walk down a long hallway will get my heart rate up to 160. by the end of my hospitalization, i have to walk uphill for a mile at a fast pace for 30 minutes to get to that heart rate. now that’s progress, my friends.) in addition to the iv antiobiotics, the respiratory therapy, and the physical therapy, a variety of doctors and nurses come in to check on everything, see how i’m feeling, draw blood, etc.
what i’m getting at here is that being hospitalized for me in no way, shape, or form means that i’m laying (lying?) sick in bed all day. i’m working. very hard. to get myself in tip top shape so that when i get discharged i’m feeling well enough to continue the work on my own. because of all the things going on, it makes it hard to have visitors, because i rarely get a half hour to myself. also, it’s hard for me to let my friends and family see me when i’m in the hospital, because i’m typically feeling very vulnerable and weak, and i know that it doesn’t matter to anyone that i might feel that way, but it does to me. also. sometimes i just get so sick of seeing so many people in a day and telling them how i’m feeling that i avoid doing any extra of that if i can.
this hospitalization was a little bit more… exciting…? than usual because it involved…dum dum dummmm EMERGENCY SURGERY! ok it really wasn’t exciting but it was sort of boring and i was trying to make it more exciting but clearly i have failed. here’s the condensed version of what happened. when i was admitted to the hospital, the interventional radiology team placed a specific kind of IV in my left arm, called a PICC line. (PICC lines are amazing and they have saved my IV life because they can last for 3 months and they also get threaded all the way to the heart, so there is a more direct flow of medication.) anyways, before the team got the line in my left arm, they tried to get it into my right arm, which didn’t go so well because the veins in my right arm are completely scarred and damaged from 15+ years of ivs and antibiotics. apparently, one of the two times the team tried to poke my right arm, they actually poked an artery, and not a vein. fast forward about three days, when my nurse has trouble getting a blood pressure reading off of my right arm because she can’t find a pulse. i find this weird and ask a med student about it. this starts about 5 days worth of poking and prodding my right arm, which did not, in fact, have a pulse. the part that made all the docs scratch their heads was that despite no pulse, my right arm wasn’t “dead” (doctor’s words, not mine, swear to god). eventually a vascualr surgeon comes up to look at my arm, because, well, why not, asks for an ultrasound to be taken of my arm, and what do you know there’s a blood clot in my artery THREE INCHES LONG. i was wheeled in to surgery the next morning and the clot was removed, and now i have a pretty scar about two inches long on the inside of my right arm. if you want more details about the whole arm/surgery situation, just ask, but right now i can’t think of anything else i want to say about it. oh. yes i can. i’m sure some people are thinking or wondering if going into surgery like that is scary. when i think about it now, i don’t think i ever felt scared. i think one of the reasons for this was because everything happened pretty quickly once the clot was discovered. i think the other reason for this was because more than anything i felt completely relieved and incredibly lucky that the clot was discovered right when it was, and that i was at one of the best hospitals in the country to have it removed. i was more scared the day after the operation when the pain was the most excruciating thing i have ever experienced and my entire arm was numb. for about 10 minutes )which felt like hours) i was pretty hysterical because i thought i was never going to have feeling in my arm again. or something. i blame it partially on the narcotics. ok now i’m done with surgery talk.
i know this is getting really long but bear with me… i’m sort of almost done…?
so after two weeks in the hospital i’m discharged and i go home to hotlanta to recover for about two weeks. while i was home i made two very huge decisions, which were extremely difficult to make, but now, i believe, will be incredibly helpful to me over the next few months/for the rest of my life. the first decision was that i needed to move to a new apartment. this was a change that needed to happen for a variety of reasons that i won’t go into. but where i am living now provides a gazillion opprtunities and ways for me to recover and get healthier and all that jazz. the second decision was to take a medical leave of absence for the rest of this semester. again, this will allow me to focus on nothing but healing and getting healthy. and hopefully it will also allow me to complete a semester in the future that is uninterrupted by crazy hospital business.
so. i think that’s it for now? i am officially back in boston and in the new apartment, and my healing process (which includes mind AND body) has begun. i’m pretty excited about it, because i think i’m going to finally get the results i’ve been working so hard for the past two years to get but haven’t been able to actually…get.
i promise that most of the posts after this one will go back to the original purpose of this blog, which is to answer questions that i’ve recieved about living my life with cf. i’m still open to recieving questions or comments, which you can email to me or post in the comment box (i think there’s a link to do that below each blog post).
alright. i’m done for the night. until next time…