HeresToLIVing

With Cystic Fibrosis

[herestolivingwithcf]

Next week marks 6 months since my last hospitalization. This is the first time in 3 years that I have spent that much time out of the hospital. Since my last hospitalization, I have raised my GPA by 2 points, held a full time job while taking 9 credits of condensed classes, hiked over 3 miles at 12,000 feet above sea level, started running again, and through all of it made unforgettable memories. 

I’ve had my port for a year now. I’m still growing mycobacterium abscesses in my sputum. I still wake up tired, and cough daily. I still spend hours on treatment weekly. I still take hand fulls of pills multiple times a day. I have not started new drugs. Nothing, on paper, has changed. However, six months ago, I made a decision.

I decided that I will not let Cystic Fibrosis define me any more. I have let denial and a desire to be normal inhibit my ability to mentally overcome this disease for far too long. Over the last 6 months, I have finally found control.

Cystic fibrosis will always be part of me. Treatments will never cease. Sometimes, they’re more rigorous than others. This is something I have come to accept about my life. Accepting living with CF is the first part. The second part is not allowing it to define your life.  

“Invictus” was written by W.E. Henley after his battle with Tuburculosis, which left him without a leg. He refused to give up when doctors told him he would have to amputate the other leg, and with his persistence he overcame the infection and was able to keep it. He wrote the poem to reflect on how he overcame the illness that he was dealt, and how he refused to let it control him. 

I will not let Cystic Fibrosis be the master of my fate. Whether or not this disease is the end of me one day, I refuse for it to be my legacy. It has taken me years to get to where I am now, and there will undoubtedly be struggles in the future, but I can move forward finally for the first time in a long time unbowed and unafraid.

** My dad is biking 50 MILES! for Cystic Fibrosis in Saint Louis. Here is a link to his fundraising page! Please donate if you feel so inclined!** 

http://fightcf.cff.org/site/TR/Cycle/38_Gateway_St_Louis?px=2887696&pg=personal&fr_id=5341

[herestolivingwithcf]

**This is a non-cf post**

This week has weighed heavy on the compassionate people of our society. Not only have we been questioning why the horrible things happened in Paris on that tragic night, but it has led us to become more aware of the other tragedies that are happening around the world. These events have led to some of us to feel a loss of hope, we’re losing sight of the goodness of the world and the people around us. 

And we’re angry.

We’re angry at those who kill innocent people. We’re angry at our neighbors for having different opinions. We’re angry at innocent people we have never met, for having different religions. We’re angry at our elected officials. We’re angry about things we cannot control. 

While recap-watching the old Star Wars movies in order to prepare for the new movie, I was reminded of the iconic advice that Yoda gives young Anakin. 

“Fear leads to anger. Anger leads to hate. Hate leads to suffering.”

Who knew a sci-fi movie quote from 10 years ago could be so relevant today? 

We are afraid. We are angry. and right now, the amount of hate that I see everywhere is astounding. 

It’s easy to feel hopeless at a time like this. It’s easy to succumb to fear. But we can stand against hopelessness. In little ways, we can change the way we feel.

We can fight against the fear that terrorism has placed in our lives. If we let this fear take over, they have already won. We can practice forgiveness in our own lives more, with our neighbors and even people we do not know. Harboring hate ends up only really hurting those who keep it. We can learn to only truly be angry with the things that we, individually, can change. Avoiding anger over things that we cannot control. 

These things are all easy to say, but implementing them in our own lives isn’t as easy. Maybe if we all take little steps like this, and commit to changing ourselves, our world will suffer less. 

“You may say I’m a dreamer, but I’m not the only one. I hope someday you will join us, and the world will live as one”

[herestolivingwithcf]

Day #19

It’s been a while, but while I'm sitting here in the hospital I might as well write something that might make a difference to some people. So here’s a sick girl’s opinion on the current state of things.

All of these protests about people experiencing problems with racism and adversity in different ways on college campuses is really starting to fucking piss me off. This is why.

EVERYONE HAS A STRUGGLE OF THEIR OWN, IN SOME WAY SHAPE OR FORM.

I’ve watched these videos and read these stories from students describing being treated in a racist way every single day by the way people look at them, speak to them, or act around them. This is their struggle.

I am treated like an outsider constantly. I cough, and everyone around me looks like I need to be fucking isolated and eradicated like I’m a disease. People ask me all the time if I’m okay, my teachers ask me to leave class because I’m too sick to be there (when I'm fine, I just have a cough), and people assume that I’m just a shit head because I miss a lot of classes. This is my struggle. It’s something I deal with because of a combination of two things- Pure bad luck for being born this way, and ignorance in others for lack of understanding or knowledge of my issue.

Acknowledging that I cannot change the actual DNA of who I am, and that there is no cure at this time, the things I can do (other than keep myself as healthy as possible) to combat the way that people treat me are centered around one main solution.

The only way I see people understanding my struggle and being more sensitive and respectful towards me about it is to educate them about it. People cannot be respectful of an issue that they do not even realize exists. 

THE BEST WAY TO SENSITIZE SOMEONE TO THE STRUGGLE IS TO HELP THEM UNDERSTAND WHAT, EXACTLY, THE STRUGGLE IS.

Now, it often becomes frustrating that I have to repeatedly explain myself to people. Sometimes I feel like they should know, already, about how rude they are being by staring when I cough, just as it is rude to stare at someone with a very apparent physical ailment. However, I don't take my anger at general ignorance of an issue out on who ever is in charge of the system. I don’t take my anger out on individuals who are ignorant of my struggle.

WE CANNOT BLAME SPECIFIC PEOPLE FOR THE ISSUES OF IGNORANCE IN OUR SOCIETY. 

In all of this, I am not at all saying that I understand the way racism feels. I am simply trying to explain how I view the issue from here. I have a struggle that makes me an outsider very often. The way that I deal with people who are rude to me seems to be the most productive way to teach people to change, and they are always willing to listen, and they always learn. 

I truly believe movements should take a more educational approach to teaching people about their struggle. Because maybe then, just maybe, things would happen. Ears would open. Hearts would open. And things could change. 

[herestolivingwithcf]

Day #18

I've grown used to putting my port in and taking it out when I want. I feel like it's just another part of the routine. The pump annoys me sometimes at night because it's loud and sometimes I want to throw it across the room but then I remember it's attached to me... I'm getting used to the questions about it, too. I don't really care when people ask about it anymore. I've come to terms with the fact that if they are freaked out by it I don't really want to get to know them anyways. I've always been told I "don't look sick" or when I tell people about my CF they're surprised because they would have "never guessed" by the way I act. This port is a physical indication of my illness. It's the first time I've had a big label visible that shows that I'm not your average run of the mill 22 year old. In some ways it's nice for people to acknowledge the struggles I go through because of it, but also I feel like it labels me in a sense. The last thing I want is for people to treat me differently because of my illness. I don't want pity. I don't want people to act like I'm sensitive. And I don't want people to be afraid of my CF. I'm still trying to make some big decisions about what my next year is going to look like. I am trying to make the most out of my summer. In some ways, this port has made me want to get out and do more than I have in the past. I almost feel like I need to prove that this port isn't going to limit me. It feels good though, and it's been an amazing summer. I went to a music festival in Chicago last weekend, had an awesome 4th of July, went on a float trip, and I'm going home this weekend. I'm happy about where I'm at and how I'm doing with my IVs. I'm anxious to figure out what the next few months will hold for me, but I know whatever I decide I'll figure it out.

[herestolivingwithcf]

Day #17

Today I put in my port access for the first time by myself. I was so proud and i was so liberated. I feel like I can do whatever I want again!

I had a pretty average day. 

Tonight I feel really alone. I’m disappointed. My heart hurts. I feel like I made a mistake.

“The best way to avoid getting your heart broken is to pretend like you don’t have one”. 

[might-bite]

[deannathespoonie-deactivated201]

I will never not reblog this when I see it. 

[celticthundersherlocked]

So freaking true.

[thatrandomalix]

I always get told that I “Don’t look autistic” oh I’m sorry, should I wear a fucking sign over my neck saying I am?

[disastergwenom]

“You’re deaf? But you don’t look deaf?” What the fuck does deaf look like??

[lolliath]

“You’re too young to have arthritis!”

since when do disability’s have an age limit?

[suckaflute]

We should all be part of Pro Infirmis!!

[sprouting-colours-deactivated20]

I always get weird looks when I go into the Students with Disabilities office.

[cfwhisper]

[herestolivingwithcf]

Day #16

This week went well. It was busy but pretty boring. It was finally nice out on Saturday. It’s been a rainy summer.

My IV is fine. I’m getting more used to it. I had one night where I was pretty upset. Sometimes I feel like my freedom is hindered quite a bit because of this stupid thing plugged into me.

At the bar last night the bouncer looked at me and shocked, pointing at my IV, said “Wow, are you okay? what is that thing? Should you be drinking with that?” I informed him I wasn’t drinking and that I was fine, and that he shouldn’t be so rude. Of course the rest of the night I was self conscious about its visibility and that was a huge damper.

I was let down by someone I really care about today. That’s always hard.

I realized today that I have to make an extremely important decision this week that has a huge, huge effect on the rest of my life. I have no idea how I’m going to do it. I feel so uneasy and upset about it that I can’t even bring myself to explain it on this blog that only 5 strangers from the internet follow.

The silver lining of today was going on a 4 mile hike in the limestone bluffs south of the city. It was a nice trail and there was no one out there so I got some peace for a while. 

it’s been a really hard day. This week is going to be difficult, I think, too. I feel overwhelmed and upset. I am trying to be hopeful, but it’s not so easy to look on the bright side right now. 

“We must accept finite disappointment, but we must never lose infinite hope.” – Martin Luther King

[herestolivingwithcf]

Day #15

This week went by pretty fast. My first week on night time 8 hour IVs. My first week of a year of being designated driver for every night I decide to go out. 

I have been doing well with the IVs. They’re pretty easy to sleep with, and they don't disrupt me during the day like my other IVs in the past have. The location of the port and access is irritating, though. It’s like, so in-your-face. Why does it have to be located in such a visible spot? I mean, I went to meet some friends at the bar the other night and the policeman bouncing the door literally pointed to it and said “what’s that”. Rude af. 

Anyways I got a part time job, just for some extra cash and to make myself feel useful. It’s at an upscale sushi restaurant downtown Saint Louis here (Drunken Fish, if anyone actually was wondering). Training starts this week, and the management seems to have a lot of respect for their employees. The business model and work model of the restaurant is also very structured and seems very fair, which is different than what I’ve experienced in serving before. 

I’m de-accessing my port myself for the first time ever tomorrow morning. Pretty excited to get this GOD AWFUL ITCHY DRESSING off for a few hours and take a nice shower.

I’ve been trying to get outside more, and I went on two hikes this week. It was really nice.

I feel excited about training and happy that my IVs have been working out well. 

Oh and Jurassic World was a great movie. I feel in love with Chris Pratt.

[herestolivingwithcf]

One moment of pain is worth a lifetime of glory

Louis Zamperini

[herestolivingwithcf]

Day #14

Today was my first day with my port in. I took a shower, and my nurse came and accessed it for the first time. I am supposed to learn how to do it myself, but that was probably one of the most painful experiences I’ve ever had. I know it’s probably because it’s still swollen from the surgery, but it did scare me a little about doing it myself. I’m slowly getting used to the idea of it all, though. I think I’m a little more sensitive about this thing this time than I ever was about my picc lines. This is the worst part, I keep reminding myself.

I had a great talk with my Dad today that made me feel a lot better about my future in regards to finishing school and starting my career. I keep having to remember that even though sometimes it’s hard to tell my parents how I feel about everything, I always feel better when I talk to them about stuff.

Tonight I’m doing my first dose of Cefoxitin. It administers over 8 hours, overnight. It’s the first night of 6 months to a year of sleeping with an IV in. At this point I just really hope it works, and the infection goes away. 

Everyone keeps telling me how strong I am for doing all of this, but I really don’t think it’s anything special. “I couldn’t do that”. If your life was dependent on something like this, you’d do it too. Maybe I’m good at hiding how afraid I am sometimes. I am pretty good at looking at the bright side of things though, so I’m just going to keep doing that.

I feel pretty sore tonight, but overall surprisingly content. 

[herestolivingwithcf]

Day #13 

Tomorrow I am getting my port in.

I’m afraid of the lifestyle change it’ll bring. I’m afraid of accessing it myself. I’m afraid the treatment won’t bring about the lung function increase that I really need.

I’m not afraid of the procedure. I’m not afraid of what strangers will think of me when they see the port.

I’m excited, in a strange way. I’m excited to think about how I will feel if this can bring my body back to the way I used to be. I’m excited to have an excuse to really get my shit together.

The support I have been receiving from my family, my guy, and my friends have been incredibly helpful. The concern that my guy has shown is unparallelled- no one I’ve ever been with has handled it better. He’s supportive when he needs to be, and that’s exactly what I need in a relationship.

I feel like life has started moving faster, but in the right direction. I haven’t felt like that in a long time. It’s about time that I feel like the future is something to look forward to instead of dread.

This is my last post without a port. It could be in me for 6 months, a year, possibly forever. I do know, however, is that June 8th 2015 is going to be a day that changes my life for the better.

[herestolivingwithcf]

Day #12

Yesterday was my birthday. I went to a cardinals game with a bunch of friends and it was so fun. Tomorrow we are going to the offsets, which is an old quarry that was flooded and now people go camp and cliff jump into the water. We’re going to go hiking there too, and camping. I’m so excited I can’t even handle it. 

I have a few goals for myself for my 22nd year. 

1. enriching my own life. Im tired of everything I've been doing the last few years and I want to find more hobbies. 

2. take care of my body. this is pretty obvious. working out more and actually doing my treatments. always.

3. commit harder to my studies. I’ve been slacking the last month or so and i need to be more attentive to my career, both in school and outside.

4. get in touch with my spirituality more. Whether that means meditating more or going to mass more, i feel like my spiritual side needs more tending to.

5. not think too much. I overanalyze a lot and i need to be more open with myself and with other people. I think the last goal will help with this one actually.

I think all these goals will lead to my final goal

6. be happier.

Right now i feel hopeful about the next year. I feel lucky too, because birthdays always remind me of all the great people who care about me.

And I am lucky. because i’m a 22 year old with cystic fibrosis and I have a lung function of almost 75%. with my own lungs. 

For that, i feel thankful. 

[herestolivingwithcf]

Day #11

This entry is a serious rant with a lot of misdirection, just a heads up. It might be worth the read, though. maybe. 

First, I just re read all my older entries and realized I'm an absolutely horrible blogger. I didn't really start this for other people to be inspired by my incredible writing skills (l o l ) though, i don't even really expect anyone to read it. blogs are kind of weird because often times they’re supposed to be for expressing your feelings, but if that’s the case why does it have to be in a public forum online? 

I guess blogs are good because sometimes people write them to find others that can relate to what they’re going through. Sometimes it’s hard to explain the way you feel and think directly to someone’s face, and if they read your blog they can understand things about you that are important but not necessarily easy (or appropriate) to convey in person. Also I can say anything on here I want and not really feel much of an immediate repercussion, and there’s still a slight thrill that it’s semipublic. So because I just realized I can actually have people respond on here, I’m going to ask a question for anyone who is out there and brave enough to show yourselves. 

Why do you think people blog? Is anyone even reading this?

Second, I’m feeling a lot brighter about what I was rambling on about yesterday. It’s easier now knowing that I’ll see him in a few weeks. 

That being said, I’ve been thinking and I feel like I’ve been kind of an emotional baby over the last 2 weeks and I’ve always been a lot tougher than this so that needs to stop. According to one study, around your early 20′s: 

“The regions in the frontal lobe that are responsible for judgment, planning, weighing risks and decision-making finally finish developing. A twenty-something’s brain has reached its peak in terms of performance.”

I truly believe that in your early 20′s your brain is trying to process that new decision making and risk weighing skill and it really fucks you. Put that in combination with having a fully developed comprehension for planning, and  things become much more complex. The result is a bunch of emotions no one knows how to fucking deal with.  

Mid life crisis? More like post-college crisis. Nobody likes you when you’re 23, as my ultimate music heroes once said. No truer words have ever been spoken. (if you don't know what band I'm referencing please go away, btw). 

We’re all just trying to figure out the real world and where we fit in and how to take all of it in. I know I haven’t graduated yet but I feel like this is totally applicable to me because I’m working on getting a career and paying for a majority of my own things already. I’m watching a lot of my friends go through it, too. And on top of all that, I’m trying to figure out how my Cystic Fibrosis will impact my life as an adult. 

To tie this all together, I think the main reason I started this blog was to narrow down exactly how I feel on certain days. That’s why at the end of every entry I conclude with a simple statement on how I feel.

Today, I feel content and satisfied. 

[herestolivingwithcf]

Day #10

My iv antibiotics are done and my lung function is up 20%! I finished another semester and started summer classes. I’m turing 22 in the next week, and it’s finally my favorite season. 

All of these things are a little overshadowed by the fact that half of my friends just moved away that i’ve spent the last 4 years with. A few people that i’ve been somewhat close with i know i’ll probably never see again. My stomach has been in knots watching my friends and people i love move on and leave and start new chapters of their lives, and the only life changes i’m looking at in the next few months is getting a port placed. 

I’ve finally found someone I actually like and he’s leaving in a few days too. Even though I have been through this before, it doesn’t make it any easier right now. I believe that even if we don’t work out ever in the future, which kind of seems the way things are heading now, I know that our paths crossed because he showed me that there are guys out there who will be supportive and like me despite all the baggage my CF brings. It sounds kind of stupid, because I should already know that, but sometimes it’s less clear than it should be. Even if it doesn’t work out, I’ve decided the sadness i will feel is worth the good times we’ve had over the short month or so we have been seeing each other. I’ve learned a lot about myself and about what I really want in regards to a relationship and that’s important too. And what I keep thinking is that if it was meant to be, it will be. And if it wasn’t it won't. But I’m glad it happened.

I feel accomplished, excited for the summer, and heartbroken today. It’s an interesting mix of emotions. 

[herestolivingwithcf]

Day #9

today i am in the hospital. I've been here for a few days now because of an infection. i am going home tomorrow with a picc and ivs for a week.

i am beside myself right now with happiness, though. my last post was based on me being pretty upset because of my situation, thinking i couldn't find someone that would accept this heavy baggage of a disease and still love me. I've had bad experiences in the past where I've been left in the dust based on him not being able to cope with the hardships that CF brings. 

I've found someone that within a few weeks of meeting me, is willing to sit with me for hours in a hospital room, doing nothing, and still say that he had a good time. he has come every day he has been able to since i was put in here, and has been there more than i could have ever imagined someone that is so new in my life could be. His support, along with endless support from my friends and family, helps me remember that i am more than just this disease. 

in a few weeks, i’m getting a port. it may be permanent. it will be somewhat visible when i have a low cut shirt on. it’s going to be a big change for me, and it was a big decision for me to get it. Im ready though, because I have accepted CF as part of my life. It’s part of who I am, but it is not all of who i am.

it’s important for people like me who are chronically ill to remember that. i AM more than this disease. 

I will not ever let this thing define me. because as soon as i let this disease dictate my life, it has won. I will not lose myself to CF. 

[herestolivingwithcf]

Me: Hey, I can do what everyone else can! I am not hindered by my illness, haha!

Me: *tries*

Me:

Me: *collapses immediately*

Me: Take me to the hospital, please.