It's been one year and one week since I've been in the hospital. For me, that's huge.
I don't know when the last time I was out of the hospital for more than a year, but it's been a while. In recent memory (since at least freshman year of high school, ~8 years ago), I've gone into the hospital at least once every year, and oftentimes twice a year. Being out of the hospital for more than a year, then, is a really big deal.
The best part? I did it almost all by myself. I didn't have any IV antibiotics, I was on oral antibiotics once, and I was only on Trikafta---the new CF modulator---since November. I've worked for this accomplishment and for maybe the first time ever I successfully fulfilled a New Year's resolution. And I don't plan on stopping.
Trikafta was announced and introduced in November (if my memory and Facebook posts don't fail me). I started the medicine on November 22, 2019, and I have noticed a huge difference. I cough so rarely and when I do it's less productive. If it is productive, my mucus is clear. I haven't seen yellow mucus in two months. That's weird! And, most surprisingly to me, I have more energy than I've ever had. I've been dancing and playing racquetball and on my feet noticeably more. It's such an incredible medicine and I can't ignore its effects. My efforts to stay active and healthy, paired with Trikafta, have paid off. I'm getting healthier. That's something I guess I never thought would happen. You see, cystic fibrosis is a chronic, progressive disease, which means that it gets worse over time. The older you get, the less healthy your lungs get. Trikafta has flipped that switch. (Not completely. I want to be clear that I do still have CF and I have to take all my medicines and do all my treatments still. The progression has slowed significantly and technically has reversed ever so slightly in terms of my lung functions, but the disease itself is still there and needs to be treated and will still get worse over time. That time, however, will be longer than before.)
I'm graduating college in May. I'm getting married in June. My life is just beginning and this medicine has come into my life to support my plans. My goal to stay out of the hospital for a year was inspired by my graduation and marriage and job plans; I didn't know of Trikafta until it was announced in November. I wanted to be healthy for myself, for Noelle, and for my friends and family. That's happening and I couldn't be more excited. In some aspects, life is actually getting easier which is so, so weird.
I'm a little nervous, though, because with this feeling of ease and improvement comes a looming temptation of complacency. I've cut down from three vest treatments a day to just two. I haven't been doing my tube feedings as much (part of that is being at home for winter break but part of it is still my complacency). A year ago I was more motivated than ever to take on my treatments and feedings and medicine fully to be the healthiest I can be. I've started to become healthier, but if I don't maintain that work ethic I won't be the healthiest. Life has gotten better, my CF isn't as burdensome, but it's still there. I can't settle for what I have but I should strive for what I want, what I can be and what I can do. This year is going to be huge for me and if I work hard and stay disciplined, then this really will be only the beginning.
Sunday, January 19, 2020
Friday, February 22, 2019
I've never thought about dying
I've only thought about living.
Which is interesting, because they're two sides of the same coin. You cannot have one without the other.
Sure, I've thought about death, and how mine, because of my CF, will most likely come before most of my friends' and family's deaths, but I realized while I was talking to a professor of mine that I've never thought about dying. I realized this when we were talking about Five Feet Apart, and we got on the subject of shortened lifespans and how it has made my perspective on life generally more positive and care free. But I remembered how in the book, Will talks about how he always imagined his last physical inhalations, and the last conscious thought of his. And it made me think, do most people with CF think about that? I mean, they have to, right? From what I've read and watched and heard from my peers with cystic fibrosis, this seems to be a common thought (in the shared sense of the word). Claire Wineland certainly thought about it, and the characters in the book/movie do. So why haven't I?
As I consider this question, I can't think of any satisfactory answers, but one keeps coming back: because I don't care. It doesn't make a difference to me. Because I want to focus on other things, like living.
I know that last breath is coming. Whether it's from CF or not doesn't matter, it's coming for all of us. So why does it matter what it's like, or what it feels like, or what's going through our heads? We're going to be dead in like, a second after that, anyway. But we're not going to be dead a second after we live. Who knows what's going to happen next? That's the exciting part about life! That's why we have to live it and focus on it and get excited about that!
Sure, there's the whole "what's going to happen after death" debate, but what's the point of focusing on something that some people don't even believe in? People believe in life and living, and I prefer focusing on what I can control, on how I can make the most of my life, and therefore not even worry about death. Because I know if I've made the most of my life now, and not five years from now when I am tenured or am published, or when I have 3 kids and a white picket fence, or have a pretty retirement savings account built up, but now, then death won't be a problem for me. I'll be ready, and I won't have any regrets.
I don't want to say thinking about death is bad. Really, just the opposite. It's one of the few things that human beings have in common, but we have built such a strange, depressing atmosphere around it. It's good to consider it and normalize it, but to focus on it isn't what I'd recommend.
I've never wondered about that last breath. Because that's not what it's about. That's not the point. To me, because we'll all have that last breath, it's boring focusing on that; I like to see what we can do differently, what sets us apart and makes us unique, what makes us happy and what makes life worth living. Life isn't about that last breath; doesn't that defeat the purpose of, you know, life? Let's not rush anything. Let's live while we can, and die when we must.
Which is interesting, because they're two sides of the same coin. You cannot have one without the other.
Sure, I've thought about death, and how mine, because of my CF, will most likely come before most of my friends' and family's deaths, but I realized while I was talking to a professor of mine that I've never thought about dying. I realized this when we were talking about Five Feet Apart, and we got on the subject of shortened lifespans and how it has made my perspective on life generally more positive and care free. But I remembered how in the book, Will talks about how he always imagined his last physical inhalations, and the last conscious thought of his. And it made me think, do most people with CF think about that? I mean, they have to, right? From what I've read and watched and heard from my peers with cystic fibrosis, this seems to be a common thought (in the shared sense of the word). Claire Wineland certainly thought about it, and the characters in the book/movie do. So why haven't I?
As I consider this question, I can't think of any satisfactory answers, but one keeps coming back: because I don't care. It doesn't make a difference to me. Because I want to focus on other things, like living.
I know that last breath is coming. Whether it's from CF or not doesn't matter, it's coming for all of us. So why does it matter what it's like, or what it feels like, or what's going through our heads? We're going to be dead in like, a second after that, anyway. But we're not going to be dead a second after we live. Who knows what's going to happen next? That's the exciting part about life! That's why we have to live it and focus on it and get excited about that!
Sure, there's the whole "what's going to happen after death" debate, but what's the point of focusing on something that some people don't even believe in? People believe in life and living, and I prefer focusing on what I can control, on how I can make the most of my life, and therefore not even worry about death. Because I know if I've made the most of my life now, and not five years from now when I am tenured or am published, or when I have 3 kids and a white picket fence, or have a pretty retirement savings account built up, but now, then death won't be a problem for me. I'll be ready, and I won't have any regrets.
I don't want to say thinking about death is bad. Really, just the opposite. It's one of the few things that human beings have in common, but we have built such a strange, depressing atmosphere around it. It's good to consider it and normalize it, but to focus on it isn't what I'd recommend.
I've never wondered about that last breath. Because that's not what it's about. That's not the point. To me, because we'll all have that last breath, it's boring focusing on that; I like to see what we can do differently, what sets us apart and makes us unique, what makes us happy and what makes life worth living. Life isn't about that last breath; doesn't that defeat the purpose of, you know, life? Let's not rush anything. Let's live while we can, and die when we must.
Monday, November 5, 2018
Why I'm excited for "Five Feet Apart"
I was going to title this, "Why Five Feet Apart is good for the CF community" but realized I don't know if it is. In saying this I am NOT saying it is bad, I'm simply saying I haven't done enough research, talked to enough CF patients, or seen the movie to determine if it is good or bad for representation or accuracy, awareness, etc.
This blog post is about why I'm on board with the movie, why I'm excited to see it, and why it means a lot to me.
On Friday, November 2, CBS Films released the trailer for the movie Five Feet Apart, a love story featuring two patients with cystic fibrosis. It draws similarities to The Fault in Our Stars, but that is for another blog post (maybe. There is a good chance I bring it up again here, so stay tuned.). Watch the trailer here: https://www.youtube.com/watch?v=5cJ7MT1RTqs
The Cystic Fibrosis Foundation recommends that CF patients don't come in contact with each other, because infections can spread too easily and can be very dangerous to the patients, but if patients do happen to meet each other, the CFF suggests they stay 6 ft. or more apart. This is to prevent infectious disease, and while it is a very serious thing and something I take relatively seriously, it can be seen as a joke to some patients, and honestly, it is kind of funny.
What makes 6 feet the magical number? I'm sure docs have studied and didn't just pull 6 ft out of thin air, but how big of a difference is 5 feet from 6? 6 from 7? Some patients even just say screw it and straight up hug each other. While I wouldn't do that, I get it. Life is short, and I've written about this. Live how you want because death is inevitable. For everyone, not just for CF patients, though people with chronic illnesses have a better sense of this. It is more immediate and so we are a little more willing to live.
I finally met my friend Natalie (shout-out to Natalie. I'm not telling her I'm putting her in this so if you're reading this, Natalie, shout-out to you), someone with CF who is my age in person this spring after talking to her online for almost 7 years (I think?). It was awesome! We made a joking comment about making sure we were 6 feet apart, and I don't think we were exactly 6, but neither of us made a big fuss about it. That wasn't the point. The point was we were meeting each other in person after years of talking behind a screen. The point was sharing our experiences, our lives.
And that's the point of Five Feet Apart. The movie, while is a romance and will most likely be sappy and cheesy and pretty Hollywood-esque, addresses a very real thing for people with any chronic illness, but CF specifically: the need for and deprivation of simple things. The first words you hear in the trailer are from Haley Lu Richardson's character: "I never understood the importance of touch. Until I couldn't have it."
Holy. Crap. Human touch. That's it!!! That's what she wants!! People with CF are asking to breathe, to touch, to love without boundaries, without fears, without worry. That's what Five Feet Apart is showing the world. It's showing the desire for us CF-ers to live, to breathe, to be normal. What will probably end up being my favorite line in the entire movie comes in at the trailer around the 1:45 mark: "This whole time I've been living for my treatments instead of doing my treatments so that I can live." CRAP. I love that line. I feel as if it embodies my way of thinking and honestly? I'm mad that I didn't think of it. I wish I could pass it off as my own but even though I can't, I still love it and will share it profusely.
This line gives me hope that the movie isn't going to just be a sappy love story. And just because it might end up having ridiculous tropes and one of them will die and stuff doesn't mean the movie doesn't represent cystic fibrosis or people living with it. Because from what I can tell, it has a lot of aspects of CF that hit home. They wear oxygen occasionally, they both have vog masks, they have a crap ton of meds, they hate doing treatments and meds but know they have to do them, they interact with nurses in a personal way (not just professional). There are a lot of cool aspects. I hope that the movie doesn't take place primarily in the hospital.
People are upset that they get even closer. FIVE FEET APART OMG. But again, what's the difference between 5 and 6? Especially for people who have a genuine connection. They don't (from what I can tell) break 5 feet (though I'm sure they will in the movie). They recognize their limits and understand what it means for them so they keep their distance but compromise a bit and decide to be only 5 feet apart. That extra foot to these lovers means the world to them, and of course they'd love more but they will take what they can get and this is what they can get.
With a disease that takes away so much, it's finally time to take back something.
Love is love. I don't like Grey's Anatomy's episode where there are two CF patients who are in a more intimate relationship than this one, and I'm not wild about the idea of a movie with two CF patients in a 5-foot-apart relationship, but again, are they just expected to move on? To give up and say "This is just something else cystic fibrosis is taking away from me."? First my breath, then my weight, then my lifespan, then my time, then my school, then my friends, and now my love. We shouldn't let cystic fibrosis rule what we do. We should rule CF. That being said, we still need to be cautious but why not live just a little?
I'd rather live just one more year having done a TON of amazing things, like travel, meet people, have great experiences trying new things, and living to my fullest than living another 1,000 years not doing any of that because I was worried about my cystic fibrosis.
It is a hard line to walk. You have to be careful, but you have to live. Quality of life is just as, if not more, important than life span. And I think Five Feet Apart shows that.
This blog post is about why I'm on board with the movie, why I'm excited to see it, and why it means a lot to me.
On Friday, November 2, CBS Films released the trailer for the movie Five Feet Apart, a love story featuring two patients with cystic fibrosis. It draws similarities to The Fault in Our Stars, but that is for another blog post (maybe. There is a good chance I bring it up again here, so stay tuned.). Watch the trailer here: https://www.youtube.com/watch?v=5cJ7MT1RTqs
The Cystic Fibrosis Foundation recommends that CF patients don't come in contact with each other, because infections can spread too easily and can be very dangerous to the patients, but if patients do happen to meet each other, the CFF suggests they stay 6 ft. or more apart. This is to prevent infectious disease, and while it is a very serious thing and something I take relatively seriously, it can be seen as a joke to some patients, and honestly, it is kind of funny.
What makes 6 feet the magical number? I'm sure docs have studied and didn't just pull 6 ft out of thin air, but how big of a difference is 5 feet from 6? 6 from 7? Some patients even just say screw it and straight up hug each other. While I wouldn't do that, I get it. Life is short, and I've written about this. Live how you want because death is inevitable. For everyone, not just for CF patients, though people with chronic illnesses have a better sense of this. It is more immediate and so we are a little more willing to live.
I finally met my friend Natalie (shout-out to Natalie. I'm not telling her I'm putting her in this so if you're reading this, Natalie, shout-out to you), someone with CF who is my age in person this spring after talking to her online for almost 7 years (I think?). It was awesome! We made a joking comment about making sure we were 6 feet apart, and I don't think we were exactly 6, but neither of us made a big fuss about it. That wasn't the point. The point was we were meeting each other in person after years of talking behind a screen. The point was sharing our experiences, our lives.
And that's the point of Five Feet Apart. The movie, while is a romance and will most likely be sappy and cheesy and pretty Hollywood-esque, addresses a very real thing for people with any chronic illness, but CF specifically: the need for and deprivation of simple things. The first words you hear in the trailer are from Haley Lu Richardson's character: "I never understood the importance of touch. Until I couldn't have it."
Holy. Crap. Human touch. That's it!!! That's what she wants!! People with CF are asking to breathe, to touch, to love without boundaries, without fears, without worry. That's what Five Feet Apart is showing the world. It's showing the desire for us CF-ers to live, to breathe, to be normal. What will probably end up being my favorite line in the entire movie comes in at the trailer around the 1:45 mark: "This whole time I've been living for my treatments instead of doing my treatments so that I can live." CRAP. I love that line. I feel as if it embodies my way of thinking and honestly? I'm mad that I didn't think of it. I wish I could pass it off as my own but even though I can't, I still love it and will share it profusely.
This line gives me hope that the movie isn't going to just be a sappy love story. And just because it might end up having ridiculous tropes and one of them will die and stuff doesn't mean the movie doesn't represent cystic fibrosis or people living with it. Because from what I can tell, it has a lot of aspects of CF that hit home. They wear oxygen occasionally, they both have vog masks, they have a crap ton of meds, they hate doing treatments and meds but know they have to do them, they interact with nurses in a personal way (not just professional). There are a lot of cool aspects. I hope that the movie doesn't take place primarily in the hospital.
People are upset that they get even closer. FIVE FEET APART OMG. But again, what's the difference between 5 and 6? Especially for people who have a genuine connection. They don't (from what I can tell) break 5 feet (though I'm sure they will in the movie). They recognize their limits and understand what it means for them so they keep their distance but compromise a bit and decide to be only 5 feet apart. That extra foot to these lovers means the world to them, and of course they'd love more but they will take what they can get and this is what they can get.
With a disease that takes away so much, it's finally time to take back something.
Love is love. I don't like Grey's Anatomy's episode where there are two CF patients who are in a more intimate relationship than this one, and I'm not wild about the idea of a movie with two CF patients in a 5-foot-apart relationship, but again, are they just expected to move on? To give up and say "This is just something else cystic fibrosis is taking away from me."? First my breath, then my weight, then my lifespan, then my time, then my school, then my friends, and now my love. We shouldn't let cystic fibrosis rule what we do. We should rule CF. That being said, we still need to be cautious but why not live just a little?
I'd rather live just one more year having done a TON of amazing things, like travel, meet people, have great experiences trying new things, and living to my fullest than living another 1,000 years not doing any of that because I was worried about my cystic fibrosis.
It is a hard line to walk. You have to be careful, but you have to live. Quality of life is just as, if not more, important than life span. And I think Five Feet Apart shows that.
Thursday, June 7, 2018
My vacation from CF
Since I can remember---before, even---I've been coughing. In order to diminish the coughing fits, I have to do 30 minute vest therapies (treatments, as I call them), usually 3 per day. I wake up with a brick on my chest; my lungs are so tight I struggle to get out of bed, because I know as soon as I move I'll be coughing for the next hour. So I lie in bed until the time of day forces me out, and I immediately go upstairs to hook up to my vest. This 1/2 hour is often interrupted many times with horrendous coughing fits, usually accompanied by puking and dry heaving. Once it's all finally over, I'm exhausted from the physical strain the treatment and the coughing demand.
So I try to go back to bed, but most days I have to work, or go to school, or have church. I muster the strength to get myself there and to participate. I serve at Olive Garden, which is a physically demanding job, requiring me to be on my feet and attentive to guests at all times. I usually only have about 1-2 minutes at any given time to catch my breath before someone needs something else. At school, I try to actually learn something and participate in class. It's hard keeping up with 4 classes at once, especially all of the homework they require. And at Mass, of course I try to participate and pray, sing, and listen. But sometimes, it's just so hard.
I'm supposed to check my blood sugars before every meal, take insulin if they're high, count the amount of carbs in the food I'm eating, take my medicine for my food, and then have an appetite that can help me gain and sustain a healthy amount of weight. But tell me, when you hear that dinner is ready, what's the first thing on your mind? Checking your blood sugars? Counting how much food you're going to eat? Or is it just eating?? Right. So honestly, I rarely do these things. It's so hard to remember, and when I do, it takes a while to do it all and I get hungry, dangit. I want to eat before my food gets cold.
Even though I'm working all day, or am at school or doing other things that a normal 20-year-old guy does, I have to do another treatment right in the middle of the day. It's only 1/2 hour, sure, but finding the time, and again the energy, to fit in that 1/2 hour is sometimes impossible. Then, before I go to bed after a long day of being on my feet, or participating in class, or playing sports or volunteering as a coach, I have to do another treatment. Then I have to set up tube feedings that help me gain weight. It's not that hard or time consuming to set them up, but it's just another thing to do. And not only do I have to set them up, because that'd be too easy; I have to swallow 7+ pills when I do them and do insulin (oh, yeah, and I have to check my blood sugars before bed, too). This doesn't include the various antibiotics, vitamins, and other CF medicines that I need to just maintain a normal level of health, let alone an excellent or superior level of health.
I just want my vacation. But there's just one problem.
It doesn't exist.
I will never be able to take my mind off of CF. There is no such thing as a vacation from it. I can never take a break or slow down and focus on other things. There's a chance it might not be cured in my lifetime. I always have to worry about cystic fibrosis.
But the hospital is the closest thing I get to a vacation from CF.
So I try to go back to bed, but most days I have to work, or go to school, or have church. I muster the strength to get myself there and to participate. I serve at Olive Garden, which is a physically demanding job, requiring me to be on my feet and attentive to guests at all times. I usually only have about 1-2 minutes at any given time to catch my breath before someone needs something else. At school, I try to actually learn something and participate in class. It's hard keeping up with 4 classes at once, especially all of the homework they require. And at Mass, of course I try to participate and pray, sing, and listen. But sometimes, it's just so hard.
I'm supposed to check my blood sugars before every meal, take insulin if they're high, count the amount of carbs in the food I'm eating, take my medicine for my food, and then have an appetite that can help me gain and sustain a healthy amount of weight. But tell me, when you hear that dinner is ready, what's the first thing on your mind? Checking your blood sugars? Counting how much food you're going to eat? Or is it just eating?? Right. So honestly, I rarely do these things. It's so hard to remember, and when I do, it takes a while to do it all and I get hungry, dangit. I want to eat before my food gets cold.
Even though I'm working all day, or am at school or doing other things that a normal 20-year-old guy does, I have to do another treatment right in the middle of the day. It's only 1/2 hour, sure, but finding the time, and again the energy, to fit in that 1/2 hour is sometimes impossible. Then, before I go to bed after a long day of being on my feet, or participating in class, or playing sports or volunteering as a coach, I have to do another treatment. Then I have to set up tube feedings that help me gain weight. It's not that hard or time consuming to set them up, but it's just another thing to do. And not only do I have to set them up, because that'd be too easy; I have to swallow 7+ pills when I do them and do insulin (oh, yeah, and I have to check my blood sugars before bed, too). This doesn't include the various antibiotics, vitamins, and other CF medicines that I need to just maintain a normal level of health, let alone an excellent or superior level of health.
I just want my vacation. But there's just one problem.
It doesn't exist.
I will never be able to take my mind off of CF. There is no such thing as a vacation from it. I can never take a break or slow down and focus on other things. There's a chance it might not be cured in my lifetime. I always have to worry about cystic fibrosis.
But the hospital is the closest thing I get to a vacation from CF.
The hospital, oddly enough, is the place where it feels I have to worry about my CF the least. When I go into the hospital, I'm obviously sicker than normal and it's not a good thing, but I do always get a little excited when I hear I'm going to be admitted. Although there is never a good time to go in, I never really mind having to go into the hospital for a week or two. It means a break!!
Think about it: the nurses take care of me. They come in and give me my medicine, they hook up my antibiotics, they set up my feedings and set a schedule for my treatments, and my only job is to get better. I don't have a strict schedule to adhere to; I don't have to go to work, spend all day on my feet worrying about others, wake up at a certain time to make it to class, do homework, schedule baseball games and practices, or go to any appointments. I don't need to set my alarms to wake up and do a treatment or to take medicine. I don't have to worry about taking my meds because when I need to, they'll be conveniently placed in a cup and set on my table in front of me, with a glass of water I don't even need to get myself. My mind is allowed to go numb. I'm allowed to relax, finally, and not think about my lungs.
Sometimes this mindset can be bad, because I can get a little lazy after the hospital. I expect others to help and I feel as if it's not my responsibility. I find that sometimes I don't always put in the effort I need because I know that if I get sick someone else will take care of me.
I also can lose my patience in the hospital easily because if I have the mindset of being on vacation, I don't want to be bothered. Of course, nurses and doctors are constantly in and out of my room, so I feel like I never get alone time. I'm not in the hospital to get alone time, though, I'm in to get better. While it's nice not to have to worry about CF here, I do have to let others take care of me because there really is no such thing as a vacation from CF.
Cystic fibrosis takes a toll on its victims. There truly is no break. There truly is no vacation. The disease doesn't turn off when we go to sleep, it doesn't let up when you are on a holiday break, it doesn't care if you have major events coming up. CF is constant. But when I'm in the hospital, even though I'm in for CF, I finally have a chance to just watch TV, play card games, go on walks, and take a mini vacation from the disease I can't imagine living without.
Thursday, February 15, 2018
WWAD?
What Would Anna Do?
Since Anna died, but especially since I've been in college and especially since I've transitioned to the adult clinic, I've thought about this. I've tried to emulate Anna and the way she lived. She was so energetic, positive, kind (not only to friends and family but to everyone!), smart, open-minded, care-free and headstrong. She was really inspirational, but I'd say she's even more inspirational to me now.
During my first hospitalization as an adult, I learned pretty quickly (but not without the help from my sister, mom, brother-in-law, and girlfriend) that I need to advocate for myself. I'm an adult and nobody will hold my hand like they did at the pediatric side.
We held a care conference pretty early on to discuss my treatment plan and to figure out what's best for me. I was able to speak my mind about my concerns, my needs, and my goals, which all probably would have been addressed (or just not have been an issue) on the pediatric side but it was different here and without knowing that I should have addressed it myself, they probably wouldn't have been addressed and I would've had a much more different experience. (This is to say that I don't think there is anything inherently wrong about the way the adult side is run, but it just wasn't what I'm used to so I figured that everything would be the same in terms of how my care worked.)
That was new to me. I forget that I am on the adult side now and that I need to speak up for myself. I need to do things without people telling me to, and I need to make sure things are done the way that's best for me. It's on me now.
So where does WWAD come in? Well, I never really saw the clinic/hospital side of Anna, which in a way is actually kind of weird. We were far enough apart in age where when I would have been more aware of her CF and stuff, she went to the adult side and we didn't have many appointments together anymore. I hear a lot of stories, mainly from my mom, about Anna and how she was probably not the best patient. But she got her way. She knew what she needed and what was the best thing for her. She told the docs and nurses how she felt and who she needed to see and who she didn't need to see. I'm definitely sugar coating this, because of course Anna was nothing but an angel ;)
Anyway, I've taken that and started to try to do it. I see the same nurse every single appointment who assumes I don't know how to carb count and she treats me like a little kid. I told her the last time she came in that I didn't need another lesson and that she can trust me. Normally, I'd be quiet and just sit through it for the 20th time. That's just a small example.
I've also taken up leading the Climb for a Cure. That's something Anna always did; she was the one who started the team each year, would post something about it every day, try to recruit people to climb, spread the word to get donations, and it worked. If you heard about the climb for a cure, it was from Anna.
For whatever reason, I didn't think that was my responsibility to pick up. The first year after Anna died, we had a HUGE climb team in honor of her. Then it gradually shrank again until last year we had just four people climb. It was so sad.
So I said "WWAD?" and posted on Facebook. I started the team this year, I'm posting about it every day, I'm recruiting people to climb, I'm spreading the word to get donations, and guess what? It's working. If you've heard about the climb for a cure, it's been from me.
Yeah, I had to post a pretty tough status to get this support. But it rang true with many people. "We shouldn't have to wait for someone to die to have this kind of success." When I wrote that, we had just $25 raised. I blame myself. I expected everybody to do it for me. To donate, to get the word out, to climb, but, like I learned in the hospital, it's my responsibility. I need to advocate for myself, for my climb team, for research funding. I need to be more energetic, positive, kind (not only to friends and family but to everyone!), smart, open-minded, care-free and headstrong. That's what Anna did, and that's what I'll do, too.
Since Anna died, but especially since I've been in college and especially since I've transitioned to the adult clinic, I've thought about this. I've tried to emulate Anna and the way she lived. She was so energetic, positive, kind (not only to friends and family but to everyone!), smart, open-minded, care-free and headstrong. She was really inspirational, but I'd say she's even more inspirational to me now.
During my first hospitalization as an adult, I learned pretty quickly (but not without the help from my sister, mom, brother-in-law, and girlfriend) that I need to advocate for myself. I'm an adult and nobody will hold my hand like they did at the pediatric side.
We held a care conference pretty early on to discuss my treatment plan and to figure out what's best for me. I was able to speak my mind about my concerns, my needs, and my goals, which all probably would have been addressed (or just not have been an issue) on the pediatric side but it was different here and without knowing that I should have addressed it myself, they probably wouldn't have been addressed and I would've had a much more different experience. (This is to say that I don't think there is anything inherently wrong about the way the adult side is run, but it just wasn't what I'm used to so I figured that everything would be the same in terms of how my care worked.)
That was new to me. I forget that I am on the adult side now and that I need to speak up for myself. I need to do things without people telling me to, and I need to make sure things are done the way that's best for me. It's on me now.
So where does WWAD come in? Well, I never really saw the clinic/hospital side of Anna, which in a way is actually kind of weird. We were far enough apart in age where when I would have been more aware of her CF and stuff, she went to the adult side and we didn't have many appointments together anymore. I hear a lot of stories, mainly from my mom, about Anna and how she was probably not the best patient. But she got her way. She knew what she needed and what was the best thing for her. She told the docs and nurses how she felt and who she needed to see and who she didn't need to see. I'm definitely sugar coating this, because of course Anna was nothing but an angel ;)
Anyway, I've taken that and started to try to do it. I see the same nurse every single appointment who assumes I don't know how to carb count and she treats me like a little kid. I told her the last time she came in that I didn't need another lesson and that she can trust me. Normally, I'd be quiet and just sit through it for the 20th time. That's just a small example.
I've also taken up leading the Climb for a Cure. That's something Anna always did; she was the one who started the team each year, would post something about it every day, try to recruit people to climb, spread the word to get donations, and it worked. If you heard about the climb for a cure, it was from Anna.
For whatever reason, I didn't think that was my responsibility to pick up. The first year after Anna died, we had a HUGE climb team in honor of her. Then it gradually shrank again until last year we had just four people climb. It was so sad.
So I said "WWAD?" and posted on Facebook. I started the team this year, I'm posting about it every day, I'm recruiting people to climb, I'm spreading the word to get donations, and guess what? It's working. If you've heard about the climb for a cure, it's been from me.
Yeah, I had to post a pretty tough status to get this support. But it rang true with many people. "We shouldn't have to wait for someone to die to have this kind of success." When I wrote that, we had just $25 raised. I blame myself. I expected everybody to do it for me. To donate, to get the word out, to climb, but, like I learned in the hospital, it's my responsibility. I need to advocate for myself, for my climb team, for research funding. I need to be more energetic, positive, kind (not only to friends and family but to everyone!), smart, open-minded, care-free and headstrong. That's what Anna did, and that's what I'll do, too.
Tuesday, January 9, 2018
Just be strong!
I'm pretty sick right now. Winter is especially hard with CF and it's not uncommon for me to get sick. This year, apparently, I'm sicker than normal (to tell you the truth, I'm probably hospital bound within the month).
When I'm this sick---to the point where I'm expecting to go into the hospital---it's hard to be strong. Anything is hard, actually. The smallest things take a ton of effort for me, things such as walking up the stairs or rushing to the other room for a tissue for someone. These tasks aren't normally hard---for anyone, but even me---but when I'm sick, I need a minute (or two, usually) to catch my breath and recover. It's sad. It's scary! Fortunately (unfortunately?) it's normal. Like, I'm not overly concerned that I'm lung-transplant sick because of this but still, I feel like I can't do anything.
People who are around me a lot during these times, namely my family and Noelle, may read this and be surprised by it (maybe not, I don't know). I try my hardest to be strong and cover it up. I'm sicker than what I put on. When I'm with Noelle and I put my coat on (another task that will occasionally take my breath away), I'll hug her, and when I hug her usually my air supply will be cut off significantly but I continue to hug her because I feel bad. I don't want to say I can't hug my girlfriend because I can't breathe due to my CF.
I hate using CF as an excuse. So I rarely do. But I think I should just a little bit more often.
Because most of the time, it's not an excuse. It's the truth. Especially when I'm sick like this, but even when I'm healthy, it's just hard to do things. I'm not strong. I can't breathe as well as others. My lungs hurt and I cough a lot. The smallest things will make it worse. I just don't want to seem weak, and sometimes (most of the time), with CF I do feel weak. I feel incompetent and helpless.
I'm not looking for your pity or sorrow, I'm just telling the truth. In order to avoid feeling this way, I've learned to cover it up as best as possible. I hug Noelle as much as I normally do. I hop up out of my seat to grab something for someone. I give up my seat and stand for others. I do what it takes to make it seem like I'm fine. Because the last thing I want is to feel helpless and constantly pitied due to my CF.
I'm worried that if I show my weakness and if I use my CF as an excuse, then I'll do it when it's not necessary. Like I said, most of the time, I'm not making it up; I actually do need to sit and breathe and calm down. But there are times when I could use my CF as an excuse just to get out of work, school, an event, or anything else. In order to avoid this, and to avoid using CF to my advantage unnecessarily, I don't use CF as an excuse at all.
I know, I know, I'm shooting myself in the foot. But I've seen people do this. Maybe not in person that often, but on Facebook, or movies, or I've heard stories (and I have, actually, seen it in person), and it disgusts me. It's like they want to have their ailment just so they can be lazy and weak and catered to.
Not me. I want to have a normal life with CF. And I know I can't. I get it. I'm not that naive, but I can do things here and there to help allow myself to lead a normal, happy life. Being strong, really forcing myself to do what everyone else can, helps. Maybe it makes me stronger, maybe it makes me dumb. I don't know.
People on CF pages always pass along the quote, "You were given this life because you are strong enough to live it." I try to prove that every day.
When I'm this sick---to the point where I'm expecting to go into the hospital---it's hard to be strong. Anything is hard, actually. The smallest things take a ton of effort for me, things such as walking up the stairs or rushing to the other room for a tissue for someone. These tasks aren't normally hard---for anyone, but even me---but when I'm sick, I need a minute (or two, usually) to catch my breath and recover. It's sad. It's scary! Fortunately (unfortunately?) it's normal. Like, I'm not overly concerned that I'm lung-transplant sick because of this but still, I feel like I can't do anything.
People who are around me a lot during these times, namely my family and Noelle, may read this and be surprised by it (maybe not, I don't know). I try my hardest to be strong and cover it up. I'm sicker than what I put on. When I'm with Noelle and I put my coat on (another task that will occasionally take my breath away), I'll hug her, and when I hug her usually my air supply will be cut off significantly but I continue to hug her because I feel bad. I don't want to say I can't hug my girlfriend because I can't breathe due to my CF.
I hate using CF as an excuse. So I rarely do. But I think I should just a little bit more often.
Because most of the time, it's not an excuse. It's the truth. Especially when I'm sick like this, but even when I'm healthy, it's just hard to do things. I'm not strong. I can't breathe as well as others. My lungs hurt and I cough a lot. The smallest things will make it worse. I just don't want to seem weak, and sometimes (most of the time), with CF I do feel weak. I feel incompetent and helpless.
I'm not looking for your pity or sorrow, I'm just telling the truth. In order to avoid feeling this way, I've learned to cover it up as best as possible. I hug Noelle as much as I normally do. I hop up out of my seat to grab something for someone. I give up my seat and stand for others. I do what it takes to make it seem like I'm fine. Because the last thing I want is to feel helpless and constantly pitied due to my CF.
I'm worried that if I show my weakness and if I use my CF as an excuse, then I'll do it when it's not necessary. Like I said, most of the time, I'm not making it up; I actually do need to sit and breathe and calm down. But there are times when I could use my CF as an excuse just to get out of work, school, an event, or anything else. In order to avoid this, and to avoid using CF to my advantage unnecessarily, I don't use CF as an excuse at all.
I know, I know, I'm shooting myself in the foot. But I've seen people do this. Maybe not in person that often, but on Facebook, or movies, or I've heard stories (and I have, actually, seen it in person), and it disgusts me. It's like they want to have their ailment just so they can be lazy and weak and catered to.
Not me. I want to have a normal life with CF. And I know I can't. I get it. I'm not that naive, but I can do things here and there to help allow myself to lead a normal, happy life. Being strong, really forcing myself to do what everyone else can, helps. Maybe it makes me stronger, maybe it makes me dumb. I don't know.
People on CF pages always pass along the quote, "You were given this life because you are strong enough to live it." I try to prove that every day.
Monday, October 2, 2017
Adult Life
Well, I finally transitioned. Last week, I had my first adult CF appointment. For those who are unfamiliar, for the first 18 years (or so) of a CF-er's life, they see a pediatric CF doctor, and when they're ready, usually after their first year of college, they make the move and see a new team: new doctors, new social workers, new dietitians, and a new building.
It's freaky.
Deep down, I know nothing really has changed. But I think it's symbolic. I am now truly, fully responsible for my health and my future. I make the appointments, I choose my treatment plan, I order and pay for prescriptions, and I do it by myself. This is not to say I'm alone in my taking care of my CF; Noelle of course is a HUGE help, and I know my parents and family are more than happy to step in and help when needed. But again, it's just symbolic. I'm an adult now. This is on me.
None of this is really new, though. For 2 or 3 years now I've been doing most of this already, so it's not like I'm doing it all for the first time, but when you have to go to a completely new building and have no idea where to go, when you have to meet new people and don't even know what they look like, and have to explain to them every detail of your medical history (without forgetting anything) so that they can properly treat you, it can be very scary and overwhelming.
Which is why I needed Anna. You thought you could get away with reading a blog post and not read about Anna, didn't you? Just remember why I started this blog.
But seriously. This is the PERFECT example of me going to Anna, asking her where to go, what doctor I should see, what they're like, what to expect, or anything else! There were SO many questions I had, and absolutely zero got answered (I mean, eventually they did, but the hard and scary way).
I saw Anna's old doctor, Dr. Billings. She's great. At the adult clinic, there are like 6 CF doctors you can see, and being an adult, you get to choose whom you see!!! I went with Billings because she knew Anna, Anna talked about her a lot, JC had good things to say, and I'd feel at least a little bit more comfortable around her. I was right.
We hit it off right away and shared a lot of laughs (she asked if I was sexually active, which I'm not. However, I thought she asked if I was socially active, so, naturally, I cheerfully answered "yup!" And she asked how many partners and I was like "woahh I totally misheard you. Yeah I'm not sexually active." and she responded, "hey, I'm not judging!" and it was great).
The appointment itself was weird. It was a mix of her getting to know me personally and from a medical history point of view, but unfortunately, my lung functions weren't great so she also had some immediate treatment to give. We had to balance getting to know each other and having fun with being serious about what to do with my health. I feel like the first few appointments will go this way; this sucks because I want to study abroad early next summer but I don't want her signing off on me going if she doesn't totally know me and my health like my other doctor did (she was my doctor for like, 10 years, so she really knew me and my lungs and my health). I'm stuck between wanting to continue living and transitioning to adulthood and not doing anything in order to stay healthy. I don't know, it's weird.
Overall, I don't know if I'd say I'm excited to transition. I loved my pediatric team and let's be honest, nobody really likes change. Again, they knew me so well and I knew them, too. These are totally new people and I have to start all over from scratch while maintaining my health. I'm glad I have Dr. Billings, mainly because of Anna, so at least she has some sort of idea of what to expect (though not totally, because there are a lot of factors there).
This is the start of my adult life with CF. I won't have my mom (or dad, because he gets all the recognition) to take me to appointments, admit me into the hospital, order medicine for me, or anything else. I'm responsible from here on out, which is terrifying. I'm not going to pussyfoot: I think it's going to be a lot easier to get sick and to die at this point. I'm responsible for my own life and if I screw up, if I don't put it first and give it the attention it needs, then it will be much shorter than I'd like it to be. I need to step up and take care of myself, not just for me, but for Noelle, for my parents, for my nephews and nieces, my brothers and sisters, and my friends. I know they're all willing to help, I have no doubt, but at the end of the day, it's my disease, my health, and my responsibility. Being adult means taking on a lot of responsibilities, and being an adult with CF means taking on much more serious responsibilities.
It's freaky.
Deep down, I know nothing really has changed. But I think it's symbolic. I am now truly, fully responsible for my health and my future. I make the appointments, I choose my treatment plan, I order and pay for prescriptions, and I do it by myself. This is not to say I'm alone in my taking care of my CF; Noelle of course is a HUGE help, and I know my parents and family are more than happy to step in and help when needed. But again, it's just symbolic. I'm an adult now. This is on me.
None of this is really new, though. For 2 or 3 years now I've been doing most of this already, so it's not like I'm doing it all for the first time, but when you have to go to a completely new building and have no idea where to go, when you have to meet new people and don't even know what they look like, and have to explain to them every detail of your medical history (without forgetting anything) so that they can properly treat you, it can be very scary and overwhelming.
Which is why I needed Anna. You thought you could get away with reading a blog post and not read about Anna, didn't you? Just remember why I started this blog.
But seriously. This is the PERFECT example of me going to Anna, asking her where to go, what doctor I should see, what they're like, what to expect, or anything else! There were SO many questions I had, and absolutely zero got answered (I mean, eventually they did, but the hard and scary way).
I saw Anna's old doctor, Dr. Billings. She's great. At the adult clinic, there are like 6 CF doctors you can see, and being an adult, you get to choose whom you see!!! I went with Billings because she knew Anna, Anna talked about her a lot, JC had good things to say, and I'd feel at least a little bit more comfortable around her. I was right.
We hit it off right away and shared a lot of laughs (she asked if I was sexually active, which I'm not. However, I thought she asked if I was socially active, so, naturally, I cheerfully answered "yup!" And she asked how many partners and I was like "woahh I totally misheard you. Yeah I'm not sexually active." and she responded, "hey, I'm not judging!" and it was great).
The appointment itself was weird. It was a mix of her getting to know me personally and from a medical history point of view, but unfortunately, my lung functions weren't great so she also had some immediate treatment to give. We had to balance getting to know each other and having fun with being serious about what to do with my health. I feel like the first few appointments will go this way; this sucks because I want to study abroad early next summer but I don't want her signing off on me going if she doesn't totally know me and my health like my other doctor did (she was my doctor for like, 10 years, so she really knew me and my lungs and my health). I'm stuck between wanting to continue living and transitioning to adulthood and not doing anything in order to stay healthy. I don't know, it's weird.
Overall, I don't know if I'd say I'm excited to transition. I loved my pediatric team and let's be honest, nobody really likes change. Again, they knew me so well and I knew them, too. These are totally new people and I have to start all over from scratch while maintaining my health. I'm glad I have Dr. Billings, mainly because of Anna, so at least she has some sort of idea of what to expect (though not totally, because there are a lot of factors there).
This is the start of my adult life with CF. I won't have my mom (or dad, because he gets all the recognition) to take me to appointments, admit me into the hospital, order medicine for me, or anything else. I'm responsible from here on out, which is terrifying. I'm not going to pussyfoot: I think it's going to be a lot easier to get sick and to die at this point. I'm responsible for my own life and if I screw up, if I don't put it first and give it the attention it needs, then it will be much shorter than I'd like it to be. I need to step up and take care of myself, not just for me, but for Noelle, for my parents, for my nephews and nieces, my brothers and sisters, and my friends. I know they're all willing to help, I have no doubt, but at the end of the day, it's my disease, my health, and my responsibility. Being adult means taking on a lot of responsibilities, and being an adult with CF means taking on much more serious responsibilities.
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