Well, it's been a few days.
I have absolutely no idea what's going on with my body. The bad taste in my mouth has completely stopped and the chest pains are slowly fading away, but now I have completely knew (or, returning) symptoms to deal with. My vision is getting more and more blurry, along with extreme fatigue, headaches, dizziness, and an increase in my unbalanced tendencies. This is making it really hard to play soccer, dance, and focus in school. I haven't let up on my treatments, so I have no idea what's causing this. I just know that I have to make it to the end of the year. I have nationals for dance come July, but other than that I'm basically open. I just have to make it through school, and then I can worry further about my health.
The walk went really well! It was yesterday (well, technically two days ago. It's 12:21) and we raised at least $28,000. If we reach 30K, we could break our all-time record! And that's saying a lot, considering we've been fundraising for thirteen years. The weather was lovely, the food was lovely. A family friend named Mark set up a PA system for the music and microphone announcements, which worked wonderfully and gave the walk a really professional feel. I also got to see Deb! Deb was my nurse at the CF clinic ever since I was diagnosed until a few months ago when she left for another job. It was really hard when she left...I can't even tell you how amazing she is at her job. She's just a remarkable woman. We got a chance to chat about Alex and Ilene and transplant and me--possibly--changing clinics soon. It was extremely refreshing.
Of course, there are going to be those people who break promises. Those people who tell you they'll come but don't. Tell you they'll donate but don't. And I've gotta say, I struggle with accepting that. I always put myself in the other person's shoes and say, "If I said I would do something, I'd do it." Some "friends" from school told me they'd come to the walk, and were then overheard today talking about how they had much better things to do on a Sunday afternoon than just walk. I don't think they get it. We're walking for a CURE. A cure that could've saved my best friend. But instead, they choose to believe that I'll be okay. That everyone with CF will always be okay. I guess I'll just have to do my best to change their minds.
I've also been having some mental and emotional break-downs lately, but that's not something I want to dive into. I talked to my mom about going back to my counselor, and she thinks it's a good idea, so that'll be taking place hopefully once school gets out. I know it'll help.
I'll upload some pictures from walk day later, since I've got mountains and mountains of homework to do now...ciao.
Monday, May 20, 2013
Sunday, May 12, 2013
May is a Tough Month
Things have just been hard, lately. Alex's passing is starting to hit me in waves, as opposed to one continuous shock. I suppose that's somewhat of a good thing, but it's making my moods extremely unpredictable. I'm up and down at any given moment, and to be honest, it's exhausting. And the most frustrating part of this is that, in this type of situation, Alex would be my rock. The one who I'd lean on for support and vent to until my spirit feels lighter. I just miss her so much. The pain will never go away.
In addition to the emotional emptiness of grieving, my physical health is growing unsteady. For the past week or so, I've been completely exhausted all the time, and for the past few days I've had headaches and fevers. I've also been dizzy, nauseated, and had lung pain on my left side. I mean, I can honestly taste the infection in my throat. I don't know why this is happening, considering that I've been working extra hard on my treatments. But I guess that's just how this disease works. I hope it's not an infection brewing...I only have three more weeks of school until summer, and I cannot afford to get even more behind. I already feel like I'm drowning in information that I don't understand.
Oh, and in addition to all this, my walk is in exactly one week. There is sooo much to be done...t-shirts, food, collecting donations, and just getting people to care. It's gonna be a tough month, that's for sure.
In addition to the emotional emptiness of grieving, my physical health is growing unsteady. For the past week or so, I've been completely exhausted all the time, and for the past few days I've had headaches and fevers. I've also been dizzy, nauseated, and had lung pain on my left side. I mean, I can honestly taste the infection in my throat. I don't know why this is happening, considering that I've been working extra hard on my treatments. But I guess that's just how this disease works. I hope it's not an infection brewing...I only have three more weeks of school until summer, and I cannot afford to get even more behind. I already feel like I'm drowning in information that I don't understand.
Oh, and in addition to all this, my walk is in exactly one week. There is sooo much to be done...t-shirts, food, collecting donations, and just getting people to care. It's gonna be a tough month, that's for sure.
Wednesday, May 8, 2013
The Children of the Third Floor
Each morning, the white sun rises over Jasper Street .
It peeks over the maple trees,
it hides from cloud to cloud,
and finally, chasing hope, it sears
through the windows of the east wing.
The children of the third floor are awake.
Sitting up slowly in stiff cotton beds,
they order their cereal,
their muffins,
their milk.
Oxygen removed and IV poles unplugged,
shaky legs and cold hands make their way across the room.
A l o n e, they view the cars passing by.
A l o n e, they admire the robins.
A l o n e, they curl up on slick leather chairs
and sniff roses received ten days ago.
Noses pressed against thick, smooth glass,
they watch the world they are missing.
Summer shines,
spring blooms,
autumn falls,
winter frosts,
and they miss the world they are watching.
But Superman soars past Benjamin’s window,
and Gracie spots pixie dust scattered through stars,
and the airplane, to Cole, is a great, puffing dragon,
saying “Hello” from time to time.
--Hannah Buck
Tuesday, May 7, 2013
The Beginning
My name is Hannah.
I'm seventeen years old.
And I have cystic fibrosis.
I was born on August 2nd, 1995, right on my due date. I was healthy--perfect oxygen, perfect weight, perfect everything. There were no problems, so I went home.
As I got older, my parents starting to notice things that set me apart from other kids my age. I was hungry all the time. We're talking seven bowls of cereal before preschool, and still heading out the door starving. I also coughed and wheezed all the time. In the first 5 1/2 years of my life, I went into the ER seven times because I couldn't breathe. My pediatrician diagnosed me with severe asthma, and put me on every asthma medication in the book. But it wasn't helping--I was getting worse.
Finally, after years of pain and unanswered questions, I was diagnosed with cystic fibrosis a month before I turned six. If you're not sure what that is, here's a basic explanation. In the 1950's, children with CF weren't expected to live long enough to attend kindergarten, so the mere fact that I survived to be five is astounding. Now, every baby is tested at birth for cystic fibrosis so this exact situation doesn't happen.
I went in to the hospital to be treated with IV medications, and in the next few months, my parents became experts on how to treat my disease. And because of my seemingly mild symptoms, I was able to have a very normal childhood. It wasn't until the fifth grade that I was admitted once again. We were told that I had cultured for pseudomonas, a common "bug" in CF patients. After this admission, things began to change.
Throughout middle school, I repeatedly retracted pneumonia, causing me to go into the hospital 1-2 times a year. And that's how things have held up until today, the end of my junior year. In the sixth grade, my lungs were functioning at 95% (a normal person's function at 120%.) The lowest they've ever been was during this past summer--44%. And today, they're hovering at around 70%.
The main purpose of this blog is for me to help other people, whether they be other CFers looking for someone who can empathize, or educating someone who's never heard of the disease. I'm not sure if anyone is ever going to read this--and if not, that's okay, too. Writing is something I'm passionate about. Something I enjoy. So I think I'm just going to put my thoughts out into the world, available for others to borrow.
Sounds like a plan, Stan.
I'm seventeen years old.
And I have cystic fibrosis.
I was born on August 2nd, 1995, right on my due date. I was healthy--perfect oxygen, perfect weight, perfect everything. There were no problems, so I went home.
As I got older, my parents starting to notice things that set me apart from other kids my age. I was hungry all the time. We're talking seven bowls of cereal before preschool, and still heading out the door starving. I also coughed and wheezed all the time. In the first 5 1/2 years of my life, I went into the ER seven times because I couldn't breathe. My pediatrician diagnosed me with severe asthma, and put me on every asthma medication in the book. But it wasn't helping--I was getting worse.
Finally, after years of pain and unanswered questions, I was diagnosed with cystic fibrosis a month before I turned six. If you're not sure what that is, here's a basic explanation. In the 1950's, children with CF weren't expected to live long enough to attend kindergarten, so the mere fact that I survived to be five is astounding. Now, every baby is tested at birth for cystic fibrosis so this exact situation doesn't happen.
I went in to the hospital to be treated with IV medications, and in the next few months, my parents became experts on how to treat my disease. And because of my seemingly mild symptoms, I was able to have a very normal childhood. It wasn't until the fifth grade that I was admitted once again. We were told that I had cultured for pseudomonas, a common "bug" in CF patients. After this admission, things began to change.
Throughout middle school, I repeatedly retracted pneumonia, causing me to go into the hospital 1-2 times a year. And that's how things have held up until today, the end of my junior year. In the sixth grade, my lungs were functioning at 95% (a normal person's function at 120%.) The lowest they've ever been was during this past summer--44%. And today, they're hovering at around 70%.
The main purpose of this blog is for me to help other people, whether they be other CFers looking for someone who can empathize, or educating someone who's never heard of the disease. I'm not sure if anyone is ever going to read this--and if not, that's okay, too. Writing is something I'm passionate about. Something I enjoy. So I think I'm just going to put my thoughts out into the world, available for others to borrow.
Sounds like a plan, Stan.
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