I'm not like other guys

I'm just going to get right to the point: CF makes me vulnerable. I feel weak, useless, needy. In a world of very sensitive social justice-ers, I probably wouldn't be able to say CF takes away my manhood because of gender roles/stereotypes, etc. But in reality, that is what CF does. Oftentimes, I find myself distanced in my manhood than even my little brother, and without doubt my cystic fibrosis contributes to that.
For example, my dad will always ask us kids to come outside and help him with various activities: cleaning the garage, helping with the patio, mowing, you name it. I try to help as much as possible, but most of the time my dad will send me in so that I can do another treatment, or the air quality from the particular project isn't up to par for my lungs, so I shouldn't be around breathing it in. Other times I simply don't feel well enough to get up and help. CF leaves me so fatigued and, for lack of a better term, pooped, that even activities that I want to do seem like a burden. Of course my little siblings get annoyed and mad at me, which hurts. What they don't understand, however, is the necessity of me staying inside. Especially when my lung functions are low, the most important thing I can think of is my health.

My view from my room as everyone helps work on the patio

Having to stay inside so much throughout my life, it feels as if CF has stripped away my manhood. I'm left feeling weak, as I watch my little brothers grow physically and mentally into men. They know so much more about tools, how to use them, where they are, what they're for, what they're called, this and that. They've experienced some pretty cool things, things that aren't really even worth bragging about because in all reality, they're not that cool, but it's cool to hear the stories and hearing about them makes me feel so left out.
I also feel vulnerable, having my dad take care of me like that. I know that sentence seems so weird and backwards and you're probably thinking, What? Isn't that what parents are supposed to do? Well, yeah, but at the same time, I'm a 17 year old guy, not a 14 year old girl. Again, the whole gender roles thing may apply here, but generally speaking, 17 year old guys are pretty independent, and don't have their dads looking after them. Don't get me wrong, I like having that care for me, but I feel like it's taking away my chance to grow and mature. In a way, it's like my pride is being taken away, but in retrospect, it teaches me to stay humble.

Cystic fibrosis also has created me to be one who has very strong emotions, which is both good and bad. I speak my mind a lot, and am not afraid if I am different or wrong or anything. However, on the bad side of the emotions, I'm, well, emotional. I'm a romantic, which some might think is weird for a guy. I direct the cause of this to CF because I've found that finding someone to help care for me (although it contradicts my last paragraph) and love me (as cheesy as it sounds. Geez I hate having that phrase in here) really improves my life health-wise. My romanticism has gotten to the point where I'm on the verge of crying at most weddings, fantasizing about my own, specifically my vows.
I feel like it'll be such a hard time saying my vows, partly because I'm a romantic and it'll be my wedding day, but partly because of my CF. I look back to Anna's wedding, how both Anna and JC struggled to choke out the words "in sickness and in health", obviously because of Anna. I was considering this the other day, and thought how although our situations are the same on a basic level, they are pretty different, and although it seems superficial, the difference really isn't: Anna, the sick one with CF, was a girl, and JC, the healthy one, the caretaker, was a guy. Again, this fits into the traditional gender roles of the man looking after and taking care of the woman, in sickness and in health, and I realized how different it is for me.
Being a guy I feel the need to step up and be the hero; I feel I need to be muscular, masculine, hairy, all that good stuff. Having CF prohibits me from fitting into the manly mold our society and I have shaped. CF of course keeps me small, making it hard for me to gain weight and muscle. Not impossible, but I do have to work a lot harder for it. I've also been told a few times that it actually delays puberty, and that I shouldn't expect to be as hairy as other guys (not a huge deal, but just another part of CF). Knowing I won't be able to grow to be the man I want to be hurts, which is just part of the problem. With me hardly able to take care of myself, it's even harder to take care of someone else. As I said before, in my mind, the guy takes care of the girl. Of course they're supposed to care for each other, but just in general. It puts me in a spot where once again, I feel so vulnerable and helpless. I don't want people to have to take care of me; I don't want to feel like a burden.
When the day comes and I'm up on the altar saying my vows, the words "in sickness and in health" will mean so much more to my wife and me than it does to most couples. In that way, I know I can really relate to Anna and JC. I know my wife will be more than amazing and help care for me, but I want to be as independent as possible.

I understand that "masculinity" is a social standard for men, and it's all arbitrary, really, but in general, CF really prohibits me from becoming a typical man. From physically not being able to grow hair to having people take care of me, CF finds so many ways to make my life harder. Luckily, I've gotten used to it, and I'm learning how to make it easier any way I can.

My CF Buddy

It has  been a year since my sister, Anna, died from CF. In this past year, I tried to put on a neutral face as people asked if I was okay. I didn't quite understand the question; I knew they were asking because I have CF and her death might have affected me more/in a different way than other people. I shrugged it off and said I was fine; I said I was sad like everyone else. And for a while, that was true. I didn't think of how Anna's death might have impacted me personally, but as the months dragged on, I realized not having my CF buddy to always go to impacted me more than I thought.

I need Anna. I didn't realize that until it was too late. You never know what you have until it's gone, huh?
I hate that, but it's so true. We take everything for granted and all of a sudden, it's gone...
After Anna's death, I played it off cool. Of course I cried, I mourned, and I missed her. I still do. But after a month, I created this blog, and I don't think it's a coincidence that I did after her passing.
With Anna being gone, I needed to get out my thoughts some other way. So I created this blog to explain my disease and give people an inside view to My life with CF. The thing is, I created this blog to get out my thoughts before I even realized I needed to get out my thoughts. I started doing my own little therapy without knowing it.
Anna was there for me whenever I needed to complain, vent, or rant about CF, and she always provided her valuable insight and experience. She could easily empathize which made her so easy to talk to for me. But now I don't have her, and I regret not talking to her about CF more. There have been so many things, as seen in this blog and even not mentioned here, that I've wanted to tell her about, ask questions about, or just talk about. I've had scary moments, exciting ones, and some that we could have shared.

After Anna died, I went out to the CF community. Again, this was very subconscious; obviously I knew I was doing it but I didn't know why. I thought I just wanted to be involved with more people who are like me. The truth is, however, that I was looking for a replacement. I needed someone else to talk to with CF. Turning to Facebook, I was faced with two options: various CF Facebook groups, and someone whom I met through a CF social media type of thing, who also lives in Minnesota.
Both worked for a little bit. The Facebook groups provided me with countless people to talk to for anything. However, after a while, I noticed most of the groups seemed to make me depressed, as people would post things about their low lung functions, their fellow CF-ers who died, and about their depression and life. I understand and respect that we all have bad days, and people with CF do suffer from depression and low lung functions, but I was surrounding myself with the negativity and depression which only made the grieving process worse.

I turned to my friend, whom I will keep unnamed here. I still occasionally talk to her, but not as extensively. While we did have great talks about CF, we couldn't totally empathize with each other; we have different situations, as she (overall) is healthier than I am and we're same age, so she had less experience than Anna. Again, nothing bad about talking to her, only that I couldn't replace her with Anna.

That's when I realized that nothing and no one can. Anna was such an amazing inspiration that still to this day encourages me and keeps me going. I've learned so much from her, CF-wise and life-wise. I've learned not to take things so seriously, and to laugh at everything, especially yourself. And most of all, I've learned to see the beauty in the world.

This past year has been crazy to say the least. There has been so much that's happened to me CF-wise that I so wish Anna would be here to see. I remember the day after I got out of the hospital last May (2014), I went to visit her for the first time in the ICU, and I told her I would probably be getting a port. She was unable to visibly show her reaction, and although she tried to talk, it was hard to make out what she said. I explained that the docs had trouble placing my last PICC and it would likely be the last one I had.
I really wanted Anna to be there for me when I got my port. She talked about it a few times, and even though she never had one, I felt like she would've been able to empathize with me and maybe even answer questions. And maybe we could have even reversed roles and I could have told her what it's like to have a port. I could have comforted her and explained what it'll feel like.

I also got hospitalized twice this school year, which is rather a rare occurrence for me. (Usually once a school year is normal). Having Anna to talk to about hospitalizations was always nice. We'd talk about the nurses, or some specific doctors who shall not be named, and sometimes she'd even visit. While these hospitalizations without Anna didn't have a drastic affect on me, it just felt different, and I missed her comfort.
This past April when I was in the hospital, I had prom, which was also highlighted in my most recent blog. I know she would have liked seeing that; Anna was always very opinionated about the caretakers, including doctors, nurses, and the social worker/dietician. I'm sure she would have been there to help and maybe even plan, and I know that she would have definitely appreciated this particular set of caregivers.

Another big thing that happened was me getting my pump, which is a different story for a different blog which I probably won't write. In short, I got a pump for my diabetes.
Anna had a pump, and I had a TON of questions about it. My pump is different from what she had, but the questions overall were pretty generic. I have a friend who has diabetes, so I could go to her for some things, but again, it just wasn't the same. I appreciated the help, but I needed my sister. My CF buddy.

Lately, the CF world has had extraordinary breakthroughs. Everyday, we are getting closer to finding a cure. A new medicine was introduced this past year to help target the underlying causes of CF and slow down any infections and whatnot. In July, the FDA will hopefully approve of it and hopefully it will be sent out for us to use. It's bittersweet; of course it's a good thing for CF patients with our particular mutation, but it's sad to think how close we were; how close Anna was to staying alive for even longer.

The Climb for a Cure team this year was the biggest one I've been a part of ever, and granted it was in honor of Anna, the Climb had always been an "us" thing. We'd always do it together, and fortunately we got to do it one last time before she entered the hospital in 2014. I loved doing the Climb in honor of Anna, but it was definitely different. It was our thing, and without her, just like many, many things, it simply wasn't the same.
Last year at the Climb, I remember we sat at the top of the stairs waiting for our group to come. She was on her iPad, and she kept making weird, random noises and "cacaw-ing" to see if they were close. We wandered around the top of the IDS together and we spotted a picture of me catching and later one of her and JC, her husband, on their wedding day. We both were very excited to see our lives being snap-shotted and shown off to the CF world.

The 2014 Climb for a Cure team

Anna and I also connected movie-wise. Two big movies come to mind when I think of Anna: Jurassic Park and The Master of Disguise. Both brought us together, but the latter definitely connected us. We could hold a real conversation using only Dana Carvey quotes, whether it be over text or in person. One time, she just randomly texted me with a quote from The Master of Disguise and I, without even questioning it, replied with another one. After a few quotes, I asked if she was watching it and then she replied with "No, I just thought of it. We're actually on our way over right now." That kind of explained our relationship: random, weird, but we went with the flow. We played off of each other and it was awesome. I've yet to watch The Master of Disguise since her death. I'm afraid I'll just be tempted to reach for my phone to text her. Maybe one day I'll be able to bring myself to do it.

I miss Anna a lot. Way more than I thought I would. For the first few months, I was in denial. I knew I missed her but I didn't know that it was because she was my CF buddy, I thought I missed her because she was my sister., But Anna was way more than that. Anna was a friend, a listener, a shoulder, a child-at-heart, and most of all, Anna was, and still is, an inspiration.

Vest (best) buddies

The Hospital: From doctors to dances

The hospital isn't a place where anyone wants to be. Despite its fascinating, entertaining technology, Masonic Children's Hospital (formerly known as Amplatz Children's Hospital) can become really boring really fast. Not trying to talk bad about Masonic; it's a great hospital! But hospitals in general can turn into a jail cell after barely a week.

I can always predict when I will be hospitalized. Usually the preceding 2-3 doctor appointments in clinic foreshadow a hospitalization; my PFT's (pulmonary function tests, which measure various lung aspects/functions) drop at least 10%, if not more (the "norm" for me being ideally in the high 80's-low 90's or above), my weight dropping any amount, usually at least 5 pounds, and my blood sugars consistently measuring high, generally 250+.  It's never really a surprise when I get admitted to the hospital, but that doesn't make it any easier when my doctor sends me in.

When I go into the hospital, they start me up with 4 treatments a day, an increase from my routine 3 treatments daily. They also put me on IV antibiotics, which is much easier and more convenient with my port. My blood sugars are monitored very closely, and usually my insulin regimen increases. Nurses are in and out and back in again every five minutes during the first day, maybe even two, to get me settled, ask a bunch of tedious, boring questions, get another set of vitals, along with height and weight, as if I didn't just do the exact same thing in clinic an hour before I came over to the hospital, and to sort out all of the medicines I take and what I will need to take in the hospital. The first days are the worst. Not that any of the days are fantastic in the hospital. But hey, you make the most of what you got, right?
Like having Sorry competitions with my mom (she cheats, don't let her tell you otherwise), or watching movies that no one has heard of, so the nurses can come in and watch with you, or going on walks around the beautiful hospital, or having coloring dates with your girlfriend. It's not all bad, I guess.

There are so many things to consider when I go in. What will I miss at school? How much homework will I have to make up?  Are there events going on, whether in the family, at school, or extracurricular? This last question definitely had to be considered during my most recent hospitalization. As some may have heard and/or seen, I had to miss prom. Not only that, but the confirmation of my cousin Max, for whom I was a sponsor. When my doctor had offered the idea of me going into the hospital, a week and a day before prom (Thursday), I decided I could probably rebound back to my normal levels and get out for both prom and the confirmation.

No such luck.

Instead of lasting the short week I had expected it to, the hospitalization dragged on for two agonizing weeks, causing me to miss my junior prom and Max's confirmation.

I had felt like I let both my girlfriend Noelle and my cousin Max down. I knew (or at least hoped) they understood, but I was excited for both, and I knew they were, too.

The doctors at the hospital understood the situation and tried their hardest to get me out by the following Thursday, the day before prom. The nurses were even better and more supportive: they kept encouraging me and putting their two cents in to the docs as to why I should get out of there for the weekend. This really made the hospitalization a memorable one. Well, that and the prom they hosted, but that's for later in the blog.

Prior to this hospitalization, I had never really been in touch with the nurses. They came and went, and sure, I had my favorites. There were ones I preferred over others, ones I really didn't like, and some that didn't stick out at all. However, during this hospitalization I had AMAZING nurses almost every single shift, and to my luck, they were consistent with taking care of me; I had the same nurses for a few days in a row, so I got to know them better, while they got to know me. This definitely helped in my care and in my hospitalization in general. I felt like I really made friends with the nurses, something I had never done before, unlike my fellow CF-ers, who seem to know every single nurse at their hospital first and last name!

In general, the doctors usually only come around once a day, and don't usually get to know me as well. This is not to say they're not as good or friendly as the nurses, just not as close and personal to me. They approach my hospital stay with a very professional, medical standpoint, as they should, which provides me with almost an uncomfortable, bad connotation with them. It feels as if I can't be as relaxed around them, I have to make sure I answer everything the way they want to hear it, and I'm actually almost intimidated by them. In the hospital, I really don't like when the doctors come in. It sounds silly, because they're taking care of me and they're the ones who make decisions which help me get healthy, but whenever they do come in, I'm reminded I'm not on vacation in the really awesome rooms Masonic Children's provides, and I still have CF, which keeps me in the hospital at the worst possible times.

Like prom. 

Besides the fact that I really connected with the nurses during this past hospitalization, it was memorable for a much better reason. Or worse, depending on how you look at it.

As I mentioned, I did not get out in the week I had expected, which prevented me from attending prom. So what did my AMAZING social worker and dietician do? They very enthusiastically and willingly threw my own personal prom right there in the hospital, complete with formal wear, a limo, dinner, and a photo booth.

The reason I capitalized the word "amazing" was to emphasize just how amazing they were, because they actually offered to put this prom on. Initially, I had imagined a low-key prom night at the hospital with Noelle, maybe dressing up, a few decorations, and a movie.
When I had found out that the idea of regular prom had been dismissed, they came bursting through the doors, quite literally, asking (rather, begging) to throw me a prom.
The huge smiles on their faces, along with the squeals and ramblings of hundreds of ideas flowing out of their mouths made it hard to say no. But it also made it hard to say yes. It was very overwhelming, especially compared to the plans I initially had!

But I said yes, and it was probably one of the best things I've ever done.

So after much planning, which included plenty of phone calls and visits asking about and confirming color schemes, food choice, time, and other logistics, prom night had arrived, and I donned my suit, complete with red vest and bowtie (classic) to meet Noelle downstairs, where the limo would drop them off. Yes, I said limo. They had planned for a limo service to drop off and pick up Noelle and a friend to and from the hospital.

After pictures, we were brought up to the room where we were greeted with streamers, writings on the window which had sayings such as "Masonic Prom 2015" and "Shake it like a Polaroid picture", a table set for dinner, goodie bags, and a mini photo booth. It was great!

We were able to order Olive Garden, who not only made our food but wrote a note which all of the employees signed, sending their best wishes and blessings. I sent them an email, but if anyone who works at the Roseville Olive Garden is reading this, thank you SO much.

The night was definitely one to remember. With taking pictures, having a nice walk outside, just being goofy teenagers, and ending with a movie, hospital prom 2015 was one I will cherish forever.
No, it wasn't real prom. But what everyone did for me and seeing the amazing support and encouragement really made it a great night, and it meant a lot.

Prom was sick! No wait, that was me

"Will you sail the 7 seas and go to prom with me?"

Unfortunately, at the end of the night, I still had CF. It was a very quick transition after I had said goodbye to Noelle; I walked back upstairs, entered my floor, notified the nurses I was back for the night, got changed, and got hooked up to an IV, did a treatment, took medicines, and suddenly, I was back in the hospital. It was nice to have a break from the usual hospital routine for the night, but it can't be like that forever, and I was definitely reminded of that.


The hospital definitely has its ups and downs, as does everything in life. I get out of school, which is both an up and a down! Making up work sucks but my teachers are pretty good about helping. The technology is really sweet: each room has a standard flat screen TV, some even with three of them; theres a personal computer in the room, as well as one accessible through the TV; gaming systems and other awesome stuff are provided; it's awesome!!
The staff are really the ones who make the hospital experience either good or bad, though. Overall, the hospital is manageable, and I get through it.

With CF, there's a lot of stuff I have to get through, and, little by little, I do it.