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.
Monday, October 2, 2017
Wednesday, September 6, 2017
Make Loud Mistakes
This post isn't really a CF post, but I've shared some other life mottos on this blog and so I figured I could stray from the CF theme for one post and share another: Make Loud Mistakes.
I can't take credit for the origin of this phrase---that goes to my high school orchestra teacher, Mr. Watson---but I do take credit for taking the phrase and expanding it. Originally, Mr. Watson used it to help us spot the hard parts of music. If we made a mistake and we knew it, we knew what we needed to work on. If it was a quiet mistake, we might have thought it was just a slip-up or not even a mistake at all. The whole point was to improve our playing by knowing what we needed to improve.
Whenever I heard that phrase, it gave me courage. I knew Watson wouldn't be mad if I messed up; I was supposed to mess up in order to get better, and the whole point of his job was to make me get better. I was allowed to not be the best or the smartest and it was good, and even welcomed. I'd slide my bow across the strings of my violin and play the notes on the page, and I had fun doing so. Looking back on high school, I realize some of my fondest memories are from orchestra, where I was in a comfortable, welcoming environment, and Watson and his phrase helped create that for me.
In and since high school, I took that phrase out of the orchestra rehearsal room and applied it to everything. I realized I was in school to learn. If I knew everything about, well, everything, then I wouldn't need to go to school. That gave me the courage to ask more questions, answer more questions, and be wrong more. In college, still, I feel this way. I get intimated going into some of my English classes with upperclassmen who are much further along in their degrees, having taken more English classes and therefore knowing (generally) more than me, so when they raise their hands and are always right, I start to worry. Is English the right discipline for me? What am I doing in this grammar class? I have to take a step back and realize that I'm in this grammar class because I don't know it yet. I haven't read half of the books my peers have because I'm not even half way through my college career. I need to learn these things, which is why I'm here. By making loud mistakes, I can learn the material and better understand English.
I've also been able to apply this phrase outside of the classroom. Recently, I took up playing Dungeons and Dragons. There's a lot of information that comes with playing that game, and as a level 2 paladin, I know almost none of it. However, I don't pretend I do. I have to ask which dice is my D8 a lot, and where on my character sheet I can find my constitution (actually, that's a bad example; I happen to know that one). Either way, I don't know it, but I'll learn it.
Oftentimes, my friends will talk about something I don't know much about, and instead of laughing along to fit in, I'll stand back. I'll admit I've never heard of something, or that I don't listen to a type of music. Not only do I learn about more things (because if you just laugh along, you'll never learn about it because everyone will assume you know what they're talking about), but I stay true to myself. I reveal to my friends who I am and what I like and don't like. I don't pretend to like something to be popular or fit in; that's stupid and kind of immature. If I learn about something, I'll do it on my own terms, not in order to be friends with others or look good.
"Make Loud Mistakes" is a phrase that I've carried with me since about 10th grade. It's allowed me to be much more confident, not only in my musical talent, but in my every day life. I know that it's okay for me not to know everything, because nobody does. I can admit when I'm wrong and when I don't know something. By doing that, I can learn more about everything and I don't see that as a bad thing at all.
Mr. Watson's phrase that he nonchalantly threw around the orchestra room has been a major influence in my life, and I encourage you, too, to be humble, ask questions, learn new things, and to make loud mistakes.
I can't take credit for the origin of this phrase---that goes to my high school orchestra teacher, Mr. Watson---but I do take credit for taking the phrase and expanding it. Originally, Mr. Watson used it to help us spot the hard parts of music. If we made a mistake and we knew it, we knew what we needed to work on. If it was a quiet mistake, we might have thought it was just a slip-up or not even a mistake at all. The whole point was to improve our playing by knowing what we needed to improve.
Whenever I heard that phrase, it gave me courage. I knew Watson wouldn't be mad if I messed up; I was supposed to mess up in order to get better, and the whole point of his job was to make me get better. I was allowed to not be the best or the smartest and it was good, and even welcomed. I'd slide my bow across the strings of my violin and play the notes on the page, and I had fun doing so. Looking back on high school, I realize some of my fondest memories are from orchestra, where I was in a comfortable, welcoming environment, and Watson and his phrase helped create that for me.
In and since high school, I took that phrase out of the orchestra rehearsal room and applied it to everything. I realized I was in school to learn. If I knew everything about, well, everything, then I wouldn't need to go to school. That gave me the courage to ask more questions, answer more questions, and be wrong more. In college, still, I feel this way. I get intimated going into some of my English classes with upperclassmen who are much further along in their degrees, having taken more English classes and therefore knowing (generally) more than me, so when they raise their hands and are always right, I start to worry. Is English the right discipline for me? What am I doing in this grammar class? I have to take a step back and realize that I'm in this grammar class because I don't know it yet. I haven't read half of the books my peers have because I'm not even half way through my college career. I need to learn these things, which is why I'm here. By making loud mistakes, I can learn the material and better understand English.
I've also been able to apply this phrase outside of the classroom. Recently, I took up playing Dungeons and Dragons. There's a lot of information that comes with playing that game, and as a level 2 paladin, I know almost none of it. However, I don't pretend I do. I have to ask which dice is my D8 a lot, and where on my character sheet I can find my constitution (actually, that's a bad example; I happen to know that one). Either way, I don't know it, but I'll learn it.
Oftentimes, my friends will talk about something I don't know much about, and instead of laughing along to fit in, I'll stand back. I'll admit I've never heard of something, or that I don't listen to a type of music. Not only do I learn about more things (because if you just laugh along, you'll never learn about it because everyone will assume you know what they're talking about), but I stay true to myself. I reveal to my friends who I am and what I like and don't like. I don't pretend to like something to be popular or fit in; that's stupid and kind of immature. If I learn about something, I'll do it on my own terms, not in order to be friends with others or look good.
"Make Loud Mistakes" is a phrase that I've carried with me since about 10th grade. It's allowed me to be much more confident, not only in my musical talent, but in my every day life. I know that it's okay for me not to know everything, because nobody does. I can admit when I'm wrong and when I don't know something. By doing that, I can learn more about everything and I don't see that as a bad thing at all.
Mr. Watson's phrase that he nonchalantly threw around the orchestra room has been a major influence in my life, and I encourage you, too, to be humble, ask questions, learn new things, and to make loud mistakes.
Monday, May 8, 2017
The Perks of Cystic Fibrosis
Jeph, certainly there aren't any perks of having a life-threatening disease, are there?!
Why, yes, reader, there are, in fact, a few perks of having this disease. Maybe not many, but I'll take what I can get.
Why, yes, reader, there are, in fact, a few perks of having this disease. Maybe not many, but I'll take what I can get.
I get to eat a lot
Yeah, baby. My parents have been trying to get me to eat anything since I can remember. They practically forced me to eat ice cream and fatty foods as a kid. I mean, how much can that suck?! Realistically, it does suck because despite eating so much, I barely gain weight (Jeph, that's just another perk! No, it's really not). I really do struggle with weight gain, which is why I have to eat so much, but I do love my food! Especially when my dad lets me get pretty much anything at the store to bring back to college. Because I have CF, I have to eat a lot, so yeah, it's not terrible. Unless I have those days when I'm just not hungry. Those suck. My sister Anna portrayed this really well in one of her blogs, which I didn't realize existed until maybe a year or two ago. (The first paragraph is what I'm talking about, but the whole blog is good so don't stop there.)
I went to HAWAII
In October of 2013, my older sister, three younger siblings, parents, and I went on a week-long vacation to Hawaii thanks to Make-A-Wish. It. was. AWESOME. We would never have been able to afford a trip like that without Make-A-Wish and my CF. Even if I didn't have CF, we still wouldn't have been able to, and I probably never would have gone. However, I do have CF, and although I do hate using CF to my advantage, I did in this case and I don't regret it. In Hawaii, I made so many memories with my family and I have that to hold on to forever. The Make-A-Wish foundation is one of the greatest foundations out there for people with life-threatening illnesses and it does so many great things, not medically, but emotionally and spiritually, for patients and families who suffer.
Hospital Prom!
How many people get to say they had prom in a hospital...twice? Yeah, it doesn't sound great. It wasn't great, but it was still a perk, I'd say. If you didn't know somehow, I missed my junior and senior prom, and my social worker and dietitian threw me a hospital prom. While the conditions weren't great, it was so memorable, and like Hawaii, it wouldn't have happened without me having cystic fibrosis. My girlfriend, Noelle, even got to ride in a limo to the hospital and we got Olive Garden catered, so, yeah, it was a good night. :) A year later, the same thing happened, but I asked the staff to keep it low-key. They respected this, but Noelle still surprised me with decorations and we dressed up for some pictures. While I had to watch my proms happen through pictures and videos from a hospital bed, I had my own unique experience while everyone else had a pretty normal, maybe even bland prom. ;)
I get my own room in college
Forget about having to worry about roommates. Oh yeah, and I have my own bathroom in my room. AND I get this room next year. How great is that?! Anna had a similar situation when she went to college, and I'm so glad I get this set up. It makes it so much easier for me to do my treatments without disturbing a roommate or making them feel uncomfortable. I have more room to store my medicines, and I just have less of a chance of getting sick because I'm not actually living with someone. So, while it looks awesome and like I'm bragging about it (okay, I might be a little), it is kind of necessary for me and any potential roommates (shout-out to Parker who was supposed to be my roommate until I rejected him).
I am more sympathetic
Okay, these next two points may seem like I'm kind of building myself up and saying "hey look how good of a person I am!" but I truly believe these things. Having a chronic illness makes you suffer. With CF, I cough all the time, I'm pretty much constantly tired, my lungs are sore a lot, and there's a lot of medicines and routines I have to do, not including my school schedule. No, this isn't a pity party, and I'm not trying to make you feel bad for me, but it's just the truth. That being said, because of everything I experience, I understand what others go through and can appreciate it when they feel sick or tired or whatever the case may be. A lot of people complain about others complaining, because "you have it so much worse!" or "I've been through worse. That's nothing." But that doesn't matter. Pain and suffering aren't objective. Just because you have a cough doesn't mean you can't complain around me because I always cough. You're not used to it! It may actually be worse than mine at the time, so yeah, you might have it worse. Just because someone might have it worse doesn't mean you can't have it bad. It's like saying you can't be happy because someone else is happier. It doesn't make sense. So, with my CF, I am more sensitive to people's problems, even if they're not physical ailments. I've been through a lot, and even if I haven't been through what you're going through doesn't mean I don't have sympathy for you. Life is hard. For everyone. I like to think that I can see multiple perspectives and possibilities, like why someone might be late, or is on their phone in church, or crying in the middle of class. Maybe they slept late, but maybe they had to stop to help someone who is struggling. Maybe the person on their phone is talking to their girlfriend, but maybe they have a loved one in the hospital and are looking for updates. Maybe the person crying doesn't understand the material and is stressing for the test, but maybe someone they know just died. There are a lot of possibilities in any situation, and sometimes they're not always the most ideal. I'm always open to talk or listen to those who need it.
I'm overall more positive
Similar to the last point, I am just overall happier in life. I've grown to realize life is short and not a lot of things we think are important really aren't. With my cystic fibrosis, I've seen this first hand. My sister died from CF at the young age of 23. I've been hospitalized for two proms. I miss a ton of homework and tests in the hospital. At the end of the day, they don't add up to that much. I've learned to put my real priorities first, because I want to be happy. I don't want to do what I have to do. I want other people to be happy, too. I do what I can when people aren't. I try to be positive and optimistic, looking at all possibilities and choices. I'm hopeful. As depressing as it might sound, we're all going to die. And the things that matter now may not matter when we're dead. The happiness and positivity that we spread will matter, however, and my goal in life is to spread as much as possible.
So, yeah. CF has its perks. Not a ton, but they're there. And I'll take them. With chronic illnesses, there is a lot to be depressed about. There's a ton of stress, medicines, doctor appointments, hospitalizations, coughing, and treatments. It's hard, but these things make it easier to live with. Cystic fibrosis sucks, but my life, despite it, doesn't.
Monday, January 23, 2017
Why I love underdogs
So there's this video going around starring this girl, Claire Wineland, who "uses her positive attitude and social media to normalize death." Watch it really quickly, then come back and read the rest.
Done? Cool. Okay, so Claire has some pretty good points, and her Youtube videos aren't that bad, actually. I enjoy them a lot. Claire, in this video, covers the very uncomfortable yet very real topic of death. I like that. People pussyfoot around death so much and they try to make themselves, or me, forget that CF comes with that very real possibility. However, the problem I have with Claire's video, and the reason I won't share it (besides on here, but I don't know if that actually counts) is because she makes it seem like death is the only thing on her mind, and the only thing CF means. To her (I'm interpreting, of course), having CF is being given a death sentence and forces you to live almost hopelessly. Even without CF, she sees everyone's death sentence. To her, just because she has CF doesn't mean she's the only one who is going to die.
To me, Claire is giving up.
Claire is accepting the fact that CF will kill her. That's a crappy way to live.
As cheesy as it sounds, I have CF, but CF doesn't have me. Thinking that CF will be the ultimate killer and going through life accepting that CF "ends in death" is surrendering to cystic fibrosis, allowing it to take over and define and control you.
To me, that'd be too easy.
It's like David and Goliath. The 1980 US Men's Olympic hockey team. The tortoise and the hare (but not the rematch. Yikes the tortoise gets his butt kicked). Everyone loves a good underdog story. I don't want CF to kill me, not because I don't want to die young, but because it's just too easy. It's too obvious and too predictable. I don't care if I live to be 85 with grand kids and great grand kids or 20 and not even halfway done with college. I'd rather die in a car crash tomorrow than die at 80 from CF. I do not want my cause of death to be what the doctors expect. What my family and friends expect. What my body expects. I was born in 1997 and was given a curse. It was a death sentence, sure, Claire, but I'm doing my time and plan on getting out early on account of good behavior and I'll be on probation. That's a weird, probably faulty analogy but you get the idea. Just because I have a life-threatening, terminal illness doesn't mean that CF "ends in death." What a pessimistic way of looking at life. Dangit, scientists and doctors are getting so freaking close to finding a cure, I am so confident that although I may not be cured of CF by the time I die, I will be so healthy despite my CF that it will be practically scientifically impossible for CF to kill me.
I'd rather die in like a car crash or obesity. (lol can you imagine?)
This whole death thing really hits home. As I've mentioned in previous blogs, I have a tough family history in terms of dying from terminal diseases. The suckiest thing is, my friends, my girlfriend, and, worst of all, my nieces and nephews know that and think about it way too much. My nieces and nephews say things all the time about how Anna had CF and died and that I also have CF and my lungs aren't healthy. Imagine hearing essentially a death sentence from a three year old, even though to them they're just stating facts and don't think anything of it.
The potential of death from cystic fibrosis also ruins the mood on multiple occasions with my friends. Noelle, the biggest supporter in my life, still struggles with the thought of losing me too early. Sometimes I will just casually bring up the idea (don't ask me how, because I honestly don't know. It just happens.) and I have to comfort her because it brings tears to her eyes. I try to make it better by trying to convince her that she or I could die any day we get in the car or something, though I don't think that is very effective. I think that's what Claire is trying to do in the video, but more pessimistically.
My new friends at Morris are still learning about my CF and all it entails. Again, in previous blogs the topic of conversation has been the difficulty in finding people who will accept me and my CF. When my friend, Parker (who wanted to be mentioned by name here) made a light joke (something I do a lot and honestly welcome) about CF, the room just kind of went silent and everyone said they just felt sad then and they all felt bad. We were having a great time and then my CF and potential death came up and it ruined the mood. This is why I make jokes sometimes about my CF. I need to be able to laugh at myself and lighten up the seriousness people surround CF and death with, or I will live my whole life completely depressed. Trust me, it's happened. I've found things that work well for me, and that includes joking and just being open about it. I love talking about my CF and answering questions about it because I don't want people to feel uncomfortable around me or anything. So, Parker, or anyone reading this for that matter, please ask me questions. I will not bring it up on my own because I don't like pity parties, but I love informing people.
I appreciate Claire's attempt at normalizing death. I think it's very important for people to understand that yes, we will all die, and no, we don't know how or when. That includes me and all people with any disease. It shouldn't be different talking about death with me than it is with someone without a disease. The difference between Claire and me, however, is that she expects CF to kill her. I can't stand the thought of it killing me. I want to be David, slinging a bunch of rocks and defeating a giant. I want to be Herb Brooks, winning an impossible hockey game for the gold. I want to be the tortoise, so focused on the ultimate goal (living) that he doesn't let even the fastest, most threatening opponent (CF) intimidate him. I want to be an underdog. Because those are the best stories. And dying from cystic fibrosis would just make my story boring.
Done? Cool. Okay, so Claire has some pretty good points, and her Youtube videos aren't that bad, actually. I enjoy them a lot. Claire, in this video, covers the very uncomfortable yet very real topic of death. I like that. People pussyfoot around death so much and they try to make themselves, or me, forget that CF comes with that very real possibility. However, the problem I have with Claire's video, and the reason I won't share it (besides on here, but I don't know if that actually counts) is because she makes it seem like death is the only thing on her mind, and the only thing CF means. To her (I'm interpreting, of course), having CF is being given a death sentence and forces you to live almost hopelessly. Even without CF, she sees everyone's death sentence. To her, just because she has CF doesn't mean she's the only one who is going to die.
To me, Claire is giving up.
Claire is accepting the fact that CF will kill her. That's a crappy way to live.
As cheesy as it sounds, I have CF, but CF doesn't have me. Thinking that CF will be the ultimate killer and going through life accepting that CF "ends in death" is surrendering to cystic fibrosis, allowing it to take over and define and control you.
To me, that'd be too easy.
It's like David and Goliath. The 1980 US Men's Olympic hockey team. The tortoise and the hare (but not the rematch. Yikes the tortoise gets his butt kicked). Everyone loves a good underdog story. I don't want CF to kill me, not because I don't want to die young, but because it's just too easy. It's too obvious and too predictable. I don't care if I live to be 85 with grand kids and great grand kids or 20 and not even halfway done with college. I'd rather die in a car crash tomorrow than die at 80 from CF. I do not want my cause of death to be what the doctors expect. What my family and friends expect. What my body expects. I was born in 1997 and was given a curse. It was a death sentence, sure, Claire, but I'm doing my time and plan on getting out early on account of good behavior and I'll be on probation. That's a weird, probably faulty analogy but you get the idea. Just because I have a life-threatening, terminal illness doesn't mean that CF "ends in death." What a pessimistic way of looking at life. Dangit, scientists and doctors are getting so freaking close to finding a cure, I am so confident that although I may not be cured of CF by the time I die, I will be so healthy despite my CF that it will be practically scientifically impossible for CF to kill me.
I'd rather die in like a car crash or obesity. (lol can you imagine?)
This whole death thing really hits home. As I've mentioned in previous blogs, I have a tough family history in terms of dying from terminal diseases. The suckiest thing is, my friends, my girlfriend, and, worst of all, my nieces and nephews know that and think about it way too much. My nieces and nephews say things all the time about how Anna had CF and died and that I also have CF and my lungs aren't healthy. Imagine hearing essentially a death sentence from a three year old, even though to them they're just stating facts and don't think anything of it.
The potential of death from cystic fibrosis also ruins the mood on multiple occasions with my friends. Noelle, the biggest supporter in my life, still struggles with the thought of losing me too early. Sometimes I will just casually bring up the idea (don't ask me how, because I honestly don't know. It just happens.) and I have to comfort her because it brings tears to her eyes. I try to make it better by trying to convince her that she or I could die any day we get in the car or something, though I don't think that is very effective. I think that's what Claire is trying to do in the video, but more pessimistically.
My new friends at Morris are still learning about my CF and all it entails. Again, in previous blogs the topic of conversation has been the difficulty in finding people who will accept me and my CF. When my friend, Parker (who wanted to be mentioned by name here) made a light joke (something I do a lot and honestly welcome) about CF, the room just kind of went silent and everyone said they just felt sad then and they all felt bad. We were having a great time and then my CF and potential death came up and it ruined the mood. This is why I make jokes sometimes about my CF. I need to be able to laugh at myself and lighten up the seriousness people surround CF and death with, or I will live my whole life completely depressed. Trust me, it's happened. I've found things that work well for me, and that includes joking and just being open about it. I love talking about my CF and answering questions about it because I don't want people to feel uncomfortable around me or anything. So, Parker, or anyone reading this for that matter, please ask me questions. I will not bring it up on my own because I don't like pity parties, but I love informing people.
I appreciate Claire's attempt at normalizing death. I think it's very important for people to understand that yes, we will all die, and no, we don't know how or when. That includes me and all people with any disease. It shouldn't be different talking about death with me than it is with someone without a disease. The difference between Claire and me, however, is that she expects CF to kill her. I can't stand the thought of it killing me. I want to be David, slinging a bunch of rocks and defeating a giant. I want to be Herb Brooks, winning an impossible hockey game for the gold. I want to be the tortoise, so focused on the ultimate goal (living) that he doesn't let even the fastest, most threatening opponent (CF) intimidate him. I want to be an underdog. Because those are the best stories. And dying from cystic fibrosis would just make my story boring.
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