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.

Tuesday, June 26, 2012

It will happen

My appointment yesterday wasn't to bad overall.
I was expecting my PFTs (lung functions) to have dropped more than they did because of how I had been feeling.
Weight: 107 (3 more pounds since leaving hospital a week and a half ago)
PFTs: 48% (50% when leaving hospital)

I'm going to finish up the rest of the IV anitbiotics that I have and then I'm deaccessing myself and going back in a month!
I can deal with that :)

We have decided that maybe I have been so tired because of this harsh heat.
"Drink plenty of fluids.
Stay inside.
Eat LOTS of sodium."

Not exactly sure what is causing the low-grade fevers.

At my clinic, all of the CFers sign in and then go back into a door that has a bunch of other smaller rooms that we go into. (They don't make us sit in the waiting room to help us stay away from gerrmmsss!!) Anyways, there was another girl, who is about 13ish, that went back into the door with her mom and when I went back there wasn't any rooms open so they were standing there waiting and the mom said, "This is Shelby, the girl that you started emailing a while ago." I was so lost for a second because we hadn't wrote eachother in a couple months, but then I remembered! I was so surprised that she had remembered my name, (she heard it when I was checking in). The people at the clinic call me the "ring-leader" of the CF pact. They always give me contact information of other CF girls which allows me to get ahold of them so they have someone, just like them, to talk to.
I love being around other CFers in person.

Speaking of which, me and Hannah have decided that once we're cured (it will happen) we're throwing a HUGGEEE party with all of our friends and family and Ilene's and Laura's family and once the party is over, we're jumping on a plane to Hawaii!!!
One day, it will happen.
One day.

Saturday, June 23, 2012

No one knows your body better than yourself

Slight fever? Seriously?
I don't get it. Well yeah, actually I do.
I have Cystic Fibrosis..that's why.
That's why, even though I've been on IV antibiotics for almost three weeks, I still feel sick. I do 3-4 treatments every day and STILL get sick.
I do this and I do that, over and over and over again.
I haven't had any energy since before I got admitted this past time. I've been dragging myself around just to get by everyday.
I'm freakin tired.

Ever since I had a really bad anxiety attack that sent me to the hospital about two years ago, my doctor always brings up my mental state. So now, everytime I mention my energy level he will say something about it. Honestly, I've been sooo much better in that department and it's aggravating when he does that. I get upset at times, but overall, I'm very happy. I have so much love and support surrounding me, and that's all I need and want.  He says, "With your lung functions, I wouldn't say that they're the reason for your excessive fatigue. How have you been feeling mentally? Is everything okay?"
Okay, doctors are doctors. That's it. He knows what CF is, how it affects the body, what can be done (sometimes), BUT HE DOESN'T HAVE IT!!
My lung functions aren't the best, my doctor has even said this to me. Now, I'm not trying to say that the reasoning for my weakness and fatigue is indeed caused by my lungs, but I honestly believe that it's not because I'm "depressed" like some have said.

Anyways, no one knows your body better than yourself.

There's my rant for tonight.
I need to try..keyword, try...to get some sleep.

Me and Kim (Josh's mom)

Me and my wonderful brother

Wednesday, June 20, 2012

18 days since last post? Not acceptable.

Oh boy...
I tend to be really bad at updating when sick/in the hospital and I'm not really sure why. It seems like I'd be writing more since I have absolutely NOTHING going on. Soooo..here we go.

June 3rd: Holy moly. Graduation day.
It didn't even feel like I expected. Truthfully, I just wanted it to be done and over with so I could go home and sleep. My lungs hurt worse than they had since I started getting sick again. I wasn't nervous, over-joyed, or highly excited. I was exhausted...my whole body was. I didn't want to cry for the same reasons as everyone else...I wanted to cry because of how awful I felt. I know I may sound somewhat melo-dramatic a bit, but come on now...it was my graduation day! I was hoping that maybe I would be lucky and at least feel a tad better than what I had been, but nope...my whole body went against me and did the complete opposite.
Okay, okay, so aside from all of that, I do have something positive to say...Ilene and her dad were able to make it to my graduation!! I didn't see her until after the whole ceremony, but when I did, ahhhh, it was amazing. We kept hugging eachother while knowing that the next time we were able to, would probably be in the hospital. Afterwards, they both came over to my house for about an hour while we sat around with my family and just had a good time. Hannah sent me a text saying that she was going to surprise me and show up at my graduation, but couldn't make it because she had to play in the band at her schools graduation. Bummer, bummer, bummer! It would have made the day 10x more better! Me, Ilene, and Hannah reunited again! Without doctors, residents, or nurses bickering at us.
Speaking of which..

June 4th: I had been dreading this day, but at the same time, I was wishing for it more and more. I was 98% sure that I would be getting admitted, so of course, I packed a bag. While packing, Kayla come over and brought me lunch. My energy level was so bad that I had to have my grandpa take me to my appointment. I had lost 6 pounds, which I knew because I had been keeping track, and my PFTs (lung functions) dropped from the 55% at my last appointment a month prior, to 31%. Bam! It hit me hard. I wasn't expecting them to have dropped that low. I actually told a couple people that were a bit higher than that.

On my way to the hospital!
Here's a quick list of how my stay went. (Lists are much easier)
Day 1: Vitals weren't to bad. Blood pressure was almost perfect, no fevers, and my O2 was 93, which isn't the best, but it's not the worst. I was given some oxygen because they prefer it to be above 95. I was started on my regular course of IV antibiotics. I talked to a handful of residents and nurses about my current medication list, any changes, what brought me in, how I was feeling, ect. ect... Overnight things got worse. My O2 wouldn't go above 86, and well, my lungs weren't to happy with that. I only got about an hour of sleep.
Day 2: Ilene also got admitted. I had PFTs and they dropped to 28%. I was supposed to start doing the NG tube again, but I needed the oxygen at night, so I was told to drink two boosts to help gain weight.
Day 3/4: 02 stayed below 92, and it dropped rather low at night and in the morning, but that's to be expected, so I was on continous oxygen. Ilenes 15th birthday; me and my mom got her 15 purple star balloons. :)
Day 5: O2 finally started to stay above 93 without oxygen and improved more and more through-out the day. I eventually could go several hours without needing it. Gained three pounds.
Day 6: Left my room for the first time other than PFTs and went on an LOA (leave of absence) with my mom. (LOA is where you're allowed to leave the hospital in between treatments and IV's.) Went shopping and out to lunch. When I came back, my O2 was above 94, which is a really good sign!
Day 7: Ilenes birthday party! One of the doctors allowed me to go as long as we wore a mask and stayed a reasonable distance away from eachother. Went on another LOA. Weight was down two pounds.
Day 8: PFTs went up to 50%!! Hadn't needed oxygen for a couple days. Ilenes PFTs went from 47% to 58% which is crazy!!! Hers haven't been that high in...I don't even know how long.
Day 9: Lost another pound
Day 11: Came home!!!

I'm currently on home IV's and have an appointment on Monday to figure out when, and if, I can stop them.

How I'm feeling physcially: Exhausted. Tired. Sore. Breathless. Sick. Yup. I don't know if maybe...hopefully...it has something to do with the heat. It has been in the 90's all week and it's brutual for my body. I'm trying to stay inside as much as possible.
How I'm feeling mentally: On and off. At moments, I feel like I could take on the world, and then instantly, I begin to feel lost and weak.

A couple days after I got home from the hospital, I noticed something new...and scary. My lungs feel weaker. My PFTs did go back up, not completely, but close enough, but I feel as if my lungs have weakened. It's really hard to describe, but it's terrifying to me. My body can only handle so much antibiotics, sickness, and scarring. I almost mentioned something to my mom, but I've been kind of weary about saying certain things ever since a conversation we had the day before I came home..here's how it went.
But first, some background info; My mom prefers that I stay in the hospital during my whole course of IV antibiotics because it's safer and more efficient. My normal course is roughly about 3-4 weeks.
Me: Doctor said tomorrow is the day!
Mom: Ok. I had a feeling that would happen.
Me: Uhh okay. I feel like sometimes I can't be happy about coming home
Mom: Be happy. It is what it is
Me: I cant be happy if you're going to be upset.
Mom: It's not that I'm upset or that I'd rather have you there...It's because I'd rather have you well. You're going to come home and start feeling bad and it makes me feel helpless.

Annndd that's why I haven't exactly talked to my mom about how I'm feeling. I know that it would hurt her to hear that I'm not feeling good already. I used to be really upset when my mom would mention that I should stay a bit longer, but now I understand her reasoning for it. And she's right..I do start getting sick almost right after being discharged, but at the same time, it's not like I can stay in the hospital forever.

Some exciting news: This past Sunday I got to see one of my favorite people, Kim! She's Josh's mom, the one who recieved his double lung transplant. She completely surprised me! She stopped by my house the night before, but I was at the movies so I wasn't able to see her. She didn't tell me that she was coming the next day, but she did!!

I haven't been to counseling since before I went in the hospital and I really feel like I need to go. Actually, I did have an appointment today, but my brother had to get surgery on his thumb (box cutter accident) and he had to be at the hospital the same time as my appointment. My mom wouldn't be able to be at the hospital until after work and no one else could take him, so I had to cancel my appointment. Turns out that my stepdad decided to take a vacation day which meant that I didn't need to take him. I called to reschedule an appointment and they didn't have one until next Wednesday.

Well...I think that about sums it all up.
I'm really going to try and post more. I write, but I don't ever post much of it. I need to post more than just updates. I want it to be more consistant and personal. Poems, current thoughts, rants, inspiration.

Here's some pictures to go along with everything.

Saturday, June 2, 2012

We are warriors, to say the least.

The first few months of my life were critical. I was constantly being transferred from one hospital to another in hopes of finally finding the solution. There were countless moments of close failure. Tubes, machines, and monitors consumed my underdeveloped 4 pound body. A diagnosis was revealed. Yes, finally an answer, but the suffering won't suffice because of it. Literally, since the very second I was born, I have been fighting for my life.

9 1/2 years went by with nothing but a mere glimpse into the CF world. Treatments, pills, and frequent doctors visits were necessary, but they weren't entirely to the point where it controlled my life. At 10 years old, in January 2004, I became hospitalized and was brought into a part of something new that would soon become "normal" to me. Another few years passed with nothing but the daily treatment regime and every 3 month doctor visits. During my last two years of middle school I started to see the real side of Cystic Fibrosis. Hospitalizations were becoming closer together, I was diagnosed with Pseudomonas Aurginosa, and overall, my CF was getting the best of me, ever so slowly.

When high school approached there was no possibility of hiding this illness from myself. Every downfall meant an increase in permanent damage and more medications. I encountered brutal events such as coughing up blood, requiring oxygen, becoming extremely underweight, severe depression, indescribable pain, countless procedures, and seeing many others fight the same battle, but having to say goodbye at a age that is much to young.  I learned the hard way that sometimes there won't always be an answer and even though we deeply wish it to be possible, doctors and scientists aren't miracle workers. They just simply can't solve every problem.

In every CFers life, there are milestones that are reached. Through-out our lives we see ourselves decline at a devastating rate, so for us to reach a new milestone, well, it's a beyond beautiful experience. Literally every single birthday, first day of school, becoming an official teenager, starting high school, turning 18 which is the infamous day that many CFers are told they will never reach finishing college, finding your soulmate, getting married. Every goal that has been reached and every hill that has been climbed help remind us of why we keep fighting. We are warriors, to say the least. Warriors who never give up in the midst of adversity.

My health at the moment isn't doing the greatest. This past week I have lost roughly 6 pounds, my breathing becomes worse everyday, and my energy level is being sucked out more and more. I have been trying my best to make it until graduation without any antibiotics, whether it be oral or IV. I can honestly say that I am miserable right now. I was not able to even shake my inhaler in hopes of helping me breathe a little easier. But, I have made it. 

Tomorrow will be another milestone that I will luckily have the chance of being a part of. On June 3rd, 2012, I will officially become a Jonesville High School graduate.