I'm young. 18 years old to be exact, but my heart and mind say otherwise.
At a younger age I was never able to understand most things that were brought upon my life. I was constantly facing new struggles that kids I was surrounded by weren’t dealing with and may never have to. I grew up surrounded by medical terms, doctors, and hospitalizations. I became familiar with medication lists so long that they consumed 3 full pages.
My whole life I have been raised through challenges, broken dreams, and learning to adapt to new lifestyles time and time again. As I began to get older and wiser I learned to accept my fate in life, I learned to face difficulties with nothing but a positive outlook, and I learned that there is no way to change your past, but there are ways to make your present and future worthwhile.
There have been times where I was not able to keep my vigorous frame of mind. In these moments I would feel myself slowly drowning in sorrow, defeat, but most of all, guilt. I felt guilty because, even though I may not have been in the best situation, I was far better off than some people in this world. These are the moments that have helped define who I am. People will hear my infectious laugh during my most difficult intervals, I will have an everlasting smile on my face when all I want to do is break down, and no matter what is going on in my life, I am always putting forth the effort into making others happy.
For me to be able to say that I am satisfied with myself, life, and all of its entities is a wondrous feeling and gift. Every day I fight the odds and live with a mad, passionate determination, which no matter what, will never be destroyed.
I’m young. 18 years old to be exact, but my heart and mind say otherwise.

Thursday, November 29, 2012

Vantage Point English Essay

When most people hear the word, “hospital,” they tend to think morbid, bleak, and depressing thoughts. They picture needles, doctors, machines, and blood while shivers run through their body. Sounds of painful cries, upsetting news, and unfortunate phone calls may ring about in their ears. My perspectives of hospitals differ from a large sum of society. I think about lives that have been saved rather than lives that have just gone cold from the absent heart beat. I imagine kids who are receiving a second chance rather than just being confined to IV poles and machines. Unlike most people, I have an odd sense of comfort around needles, blood, and just the hospital in general. So, is it odd that I chose to sit and observe hospital life for sheer enjoyment? Maybe so, but what can I say? At least it just makes me that much more unique, for a better word.   

To begin, I had already been at the hospital as an inpatient from September 17th through October 1st. I originally planned on making the hospital my choice of observation so being an inpatient just made things that much simpler. Luckily, since I’m 18, I was now able to leave my room on my own to go to the cafeteria, take a simple walk outside, or to just roam the floors. The pediatric waiting room and outpatient surgical floor were the two destinations that I had decided to observe, beings how I assumed those would have the most activity. And so, my journey began. 

Granted that I have considered the hospital, “my second home,” I knew the route in which I had to take. First stop: Pediatric waiting room. I walked outside of my room, laptop in hand, and grabbed a mask that leached to my mouth with every breath in. The walk to the waiting room wasn’t far from where I was located. A less than 5-minute walk with only three turns, and I had arrived. I took a seat, opened my laptop, and began surveying as if I were a security camera recording all of the action. The room was filled with several couches, chairs, and tables, but only few had been taken. There was only a maximum of 20 people that had sat down in the 30 minutes that I was there and I believe out of the 20 people, they separated into 3 different families. A family of 7 had sat in there for the time period that I was there and we exchanged smiles and nods numerous times. It always makes me feel better knowing that there are kids who are being surrounded by family and loved ones while undergoing a difficult obstacle. In my many years of hospitalizations, I had seen numerous kids who were so young, but spent many hours alone. The family that was there the whole time seemed like such a caring bunch. I watched as they all got along with each other, which were confirmed, with laughs, comforting words, and hugs amongst all of them. There were two little kids that weren’t running around screaming, crying, and/or complaining. Instead, they sat with each other and skimmed through children’s books while conversing about the pictures quietly. It’s amazing how kids can easily adapt to situations by just grasping a hold onto what’s happening through sight and emotion of others.  

I then continued on my destination by heading to the outpatient surgery waiting room. Arriving here, there were a much more variety of people. As I sat down, I began to count in my head how many different family’s there were: 12 was the number I ended up with. I watched as members of different families constantly looked at their pager they have received to see if there was anymore news about the surgery that their loved one was undergoing.  Several times, there were a handful of different surgeons that would greet a family and luckily, every thing that I had heard was all good news. You could see the expression of relief, happiness, and tears of joy form on the faces of worried ones. Each time I saw that happen, I to began to smile. In a back corner I saw an older couple holding hands while the lady held a tissue to control her running nose from the crying. I felt sympathy and hurt as I saw that. In my head, I began thinking about how different peoples lives are and how fast so much can change. I remember when my best friend, Joshua Pauken, and I were talking on MSN and he told me he had to go and that they just called for him to receive new lungs. I didn’t believe him for a second and then I received a call from him a minute later telling me, that after waiting 5 ½ years, it was official. The amount of emotions that were flowing through me could never be expressed. At the same time, a family was mourning over the loss of a loved one, while another family was celebrating for Josh’s new chance at life. Hearing families receive words of, “The surgery went well and he’s doing good,” or “Your daughter is now in recovery. There were no complications, the feeding tube is now placed so hopefully we will see positive results within the next month, and you can see her if you’d like (Qtd by Dr. Leinwand),” rung about memories of Josh’s recovery and my friend Ilene’s feeding tube placement. I almost went and told them about Ilene’s G-tube and how much it has helped her, but they all instantly sprout up and headed towards the recovery room.

In the end, I was satisfied with my choice of observation. Within the hour spent in the two rooms, I underwent feelings of sadness, gratitude, joy, sorrow, motivation, and comfort. I witnessed as families and loved ones came together during rough times to overcome the obstacle as one. Out of all the families that I observed, not one argued, instead, they all comforted, hugged, and smiled at one another. After watching all of this, I began to think a lot of my family and my close friends. Thoughts of how much I appreciate and love them started to make tears well in my eyes. So much of me wanted to just make a huge group hug with each and every one of them for an unlimited amount of time.  This allowed me to see how humans interact amongst each other during troubling times. A handful of emotions were felt in just my 60 minutes, most of which were positive. So yeah, hospitals can be gloomy, depressing, and may protrude shivers through some individuals, but to me, they help shed a bright light of hopefulness and gratitude amongst my whole being.

Life is a nightmare

"I didn't want to wake up. I was having a much better time asleep. And that's really sad. It was almost like a reverse nightmare, like when you wake up from a nightmare you're so relieved. I woke up into a nightmare."

"And what is that nightmare, Craig?"


"Life is a nightmare."


Monday, November 26, 2012

Not so good

Today was not so good.
I found myself contemplating multiple times on whether or not I should go to the hospital this weekend...that's how crappy I feel right now.
I woke up around 10:30 and talked myself into getting out of bed for about 15 minutes. I then took my pills, went downstairs and did a treatment, and then came back upstairs and fell asleep until about 2:00...I once again had to talk myself into getting out of bed for probably 30 minutes...WTF.
I had to go to the store to get supplies to take stuff with my Kalydeco...I honestly almost had a mental breakdown while I was there. I was also getting stuff for my mom because I thought that maybe if I got out of the house for a bit, I might feel better....the complete opposite happened. My little brother came with me and I had to ask him several times to push the cart and to slow down because that was too much for me. It took us about over an hour to get not even 15 things just because of how slow I had to walk. I felt pathetic and wanted to punch someone. I snapped at my brother a couple of times over stupid things because I was so frustrated and that made me feel worse.
I've had multiple cough attacks today and the first one this morning made me faint a bit because I couldn't catch my breath. A couple of hours later I had another one and actually smacked my head on the wall because I lost my balance and couldn't focus.
My whole body feels like lead, my lung functions have definitely dropped, I haven't had much of an appetite and I know I've lost weight, but I don't even want to check it...actually, the other day I was going through my closet and pulled out a pair of jeans from seventh grade and put them on...they didn't fit..they weren't too small, they were too big..I needed to wear a belt with them...once again..WTF!
I was in quite a bit of pain today mainly in my lungs and kidney area.
I feel like I'm just complaining and I really really hate that.
I also feel like a complete loser because I have missed my past two counseling appointments without even calling in and canceling them. I called to check and see when my next one was and come to find out, it was the day before. I then had one last Wednesday and it didn't even cross my mind. This is completely out of character because I always look forward to my counseling appointments and know the exact date and time...I'm losing it. My mind has been lost recently and I have no idea who I am right now. I'm happy, but I'm lost. Michelle, if you are reading, I am SO sorry. I had meant to call today, but yeah. I put a reminder in my phone to call tomorrow. No words can express how sorry I am. I miss you and need to see you ASAP.
My head has not been in the right place for awhile. I can't focus on anything and need some guidance...maybe a good cry as well.
I have an advising appointment tomorrow to get my classes scheduled for next semester. I'm actually pretty excited about that.
I'm going to try and get some sleep now. I haven't been able to fall asleep until about 3-4 AM for the past 4 days.
Sooo yeah...today was not so good.

Wednesday, November 21, 2012

I have everything

November 12th: Weight was 106 and lung functions were 32%, 32%, and 35%. Continued another week of home IVs.

November 19th: Weight was 105 and lung functions were 34%, 34%, and 35%. Finished up my IV medications that I had left and de-accessed later that night and took my AMAZING IV free shower after 4 weeks of being accessed. Return to the doctors in a month. My weight is almost in the red zone. If I lose one more pound than I have to start doing the NG. I'm honestly not even really sure as to why my weight isn't going up. I've been eating A LOT, I'm not missing any of my enzymes, I'm not terribly sick as of right now...Buuut, I am thinking that I might have kidney stones again and those tend to make me lose quite a bit of weight. I need to get ahold of my urologist and get that resolved. I've had plenty of them..7 at one time before...so yeah, I'm very familiar with how they feel. I've also been having fevers on and off for awhile so I never really know how I'm gonna be feeling. There's a lot of days where I just honestly don't feel well at all and all I want to do is lay in bed. Actually, no joke, the night that I stopped my IV's, I started having that really dry, constant cough which has always been a sign of a flare-up...not even a couple hours after I de-accessed. Is it impossible to catch a break? It's okay. I could be a lot worse. I could be better, but I could be worse. I'm here. I'm alive. 

We are still in the process of switching all of my stuff to U of M. I really have no idea how much longer it will take. Hopefully not too long. They are supposed to be calling me when everything is set up to make my first appointment. 

Classes are going well. I'm passing all of them with good grades and the semester finishes in less than a month. 

I'm hoping I can hold out this month without getting too sick. Last Christmas I was AWFUL and almost didn't make it without having to get hospitalized, but I made it a strong goal to wait until at least the day after to get admitted. I was confined to the couch for a week and half and had to have someone help me do absolutely anything..even something as small as walking to the other end of the room for my nebulizer machine, but I was surrounded by my family and everyone was managing to keep in good spirits despite it all. I did catch my mom a couple times break down when she didn't probably know that I knew, but how can a mom watch her child go through that without breaking down every time they look at them? I was in for New Year's. No one wants to spend their new year in the hospital, but we made the best of it and it wasn't too bad. 

Pleeaaseee just let me make it through at least ONE month without needing IVs. That's what I want for Christmas. I have everything else I need or could ever want. 

Thanksgiving is tomorrow.
I literally can not wait to be surrounded by family....and delicious food ;). 

Last IV for the course 

Waiting at the doctors

One of my amazing cousins that I am so grateful to have


Siblings and our friend who is considered family :)

Saturday, November 10, 2012

The realities hit hard

1. "You are so lucky that you don't have to worry about gaining weight. I would love to not have to watch what I eat. You can have some of my fat!"

Reality: My body doesn't properly absorb what I take in so I am forced to take pills every time before I eat...even if it's just a small snack. My body is constantly starved from proper nutrients which results in low vitamin levels, being constantly fatigued, having dark circles under my eyes, osteoporosis, irregular menstrual cycles and the list goes on. A vast majority of CFer's rely on calorie-enriched tube feeding supplements at night just to help maintain what they have.

2. "But you don't look sick..."

Reality: I may look healthy on the outside, but the inside is a completely different story. On the outside you'll see that I am able to withhold a sense of normalcy (what is normal anyway?). Aside from being a bit shorter, I don't exhibit many traits of this illness. I am able to laugh, smile, talk, walk, and pretend that everything is okay. Now, the inside...a completely different story. You'd see mucus, scarred filled lungs that are functioning at 35%, on a good day. The "simple" breathe in, breathe out rhythm that many people take for granted, is something that isn't so simple to me and it's something that I continuously crave an easy day of. You would see that after each laugh, I am trying for several minutes to catch my breath again. There are constant pains shooting through my so-called lungs. Multiple nights are filled with endless bouts of cough attacks that leave my body feeling like bruised lead for the next couple of days following.

3. "I know how you feel...I had pneumonia for like a week and it sucked."

Reality: The last time I caught pneumonia, my lung functions literally dropped from 37% to 18% in less than a week. I was not able to shower, sit up, or even laugh without having to catch my breath for 10 minutes afterwards. The walk to the bathroom alone left me in tears as I fought for each step. My lower lobe of my right lung collapsed and I spent a week recovering with vigorous,  extensive treatments and physical therapy. I relied on oxygen just to help with even the little things for an extended period of time. My lungs now have more permanent damage...as if I didn't have enough. Also, your bout of pneumonia is gone. My illness is not...how you felt that week, is how I feel everyday and that can not be understood in a week.

4. "I hate school. I wish I could stay home as much as you do"

Reality: You have NO idea how much I would love to be able to worry about the more simple things such as homework, the crappy lunch choices, being bored in class, and having my least favorite teacher. Chances are, I have stayed home because my body just couldn't handle the 4:30 AM mornings to fit in my treatments, let alone the 8 hour school day. My extended absences are spent in the hospital and being confined to home IV therapies and breathing treatments. My days spent at home from school aren't filled with lounging on the couch, eating food all day and catching up on my missed episodes. Instead, I am focused on making sure that I take all of my medications and do all of my treatments, all while trying to keep my fever down and wanting so badly to sleep, but not having the ability because of the latest chest pain and/or the constant cough.

5. "Maybe you should try sleeping more so you won't be so tired."

Reality: There are nights where I literally can't catch more than 2 hours of sleep because of the coughing that itches the back of my throat and to no avail, will calm down. Sometimes there are pains so intense that I am woken up in a deep sleep and am no longer able to fall back into it. I can sometimes sleep for 12 hours straight, but my body craves even more of it, so even then, I am still fatigued. My body is constantly undergoing the fight just to breathe and that alone is exhausting in itself. My poor lungs are working so so hard at times, that all I can do is focus all of my energy on just breathing.

6. "Don't worry, you'll get better and become even healthier in no time, trust me..."

Reality: I have doctors, scientists, medications, treatments, and I have my will to fight. But then again, I have infections, scarring, resistance to antibiotics, and lowered baselines. I am not capable of reversing any damage that has been done over the years. I undergo countless hours of inhaled medications and airway clearance systems on a daily basis, but that sometimes isn't enough. My body can't magically repair itself. I am fighting against this disease and this disease is fighting against me. We are both losers and winners in this battle.

7. "All you have to do is stay positive."

Reality: ...Let me just say this: Are you able to stay positive on a day-to-day basis? Life is challenging enough and when you throw in a teenage girl dealing with a chronic disease, it's not possible to remain positive constantly. Everyone has their break-downs and if you tell anyone that you don't, you're lying. It's okay to not be bright, uplifting, and strong all the time. Our downfalls help us become stronger. And trust me, I am able to find a silver-lining in every rough situation. I have broken down many times, but no matter what, I still keep going.

Laying in hospitals, joy and misery

This video is nothing too special. I just came across the idea while I was laying in bed really bored. It could have been better, but I didn't have access to all of my pictures and videos from over the year since I just recently bought a new laptop aannndd I didn't feel like turning on my other computer. 
So for now, this will have to do :)

Friday, November 9, 2012

It's not easy

October 25, 2012

October 30, 2012

I know I haven't posted in over a month, and I'm sorry for that, but I guess I just needed to take a break for a little while. It's not always easy having to reflect on my health and realizing just how sick I am. I didn't have the energy mentally or physically to keep updating...I guess I don't need to be sorry for that.

I am out of the hospital. I got discharged November 7. After the first night (second video) I got sicker and was running 103 fevers, my O2 was running low and wouldn't go up, and my PFT's dropped a little bit, but I recovered and am doing better. My weight didn't go up at all, I actually lost a pound and I'm at 104 right now...siigghh. I lost my voice again after a couple days of being admitted. I also caught impetigo on my nose (ouch). I am currently doing home IV's and probably will be for about two more weeks.

My doctor brought up the big "T" word (transplant). I am in the process of transferring to the University of Michigan CF clinic, so once I switch over, we'll see what the next step will be. I'm sort of on the borderline of needing a transplant. My numbers are low, but they probably need to be just a few % lower to be qualified. I have oxygen at home so that helps me qualify as well. I don't know, I'm not really sure what I think about it. Some people say it's a good thing, and I am trying to see that too, but it's also not a good thing. It's not good that I am sick enough to be thinking about transplants and the possibility of needing one. It's not good that my numbers are so low that I become scared. The night that he brought up transplant I had actually sat in my bed and cried for about 2 hours.
It's not easy.

When I was feeling better. 

Discharge day