Not giving up

"We are more than the worst thing that’s ever happened to us. All of us need to stop apologizing for..."

Mon, 17 Jun 2013 11:16:58 -0400

““We are more than the worst thing that’s ever happened to us. All of us need to stop apologizing for having been to hell and come back breathing.””

- Clementine Von Radics, Broken (via gospel-stitch)

Tobi podhaler and sore throat.

Sun, 16 Jun 2013 11:04:56 -0400

livelikeyouredying4:

mohawkedlady:

I’ve been on it for 3/4 days now and I am major losing my voice does it happen to anyone else? Is there anything that prevents this? Is just because I have a frozen vocal cord?

I was on tobi and it completely wiped out my voice… to the point where I couldn’t talk at all. So my doctors switched me to cayston instead and I love it.

When i started inhaled tobi for the first time it made my voice disappear. The doctors told me to drink A LOT of water and it helped. I think it removes the coating of tobi that is on your vocal cords or something… Eventually my body got used to it because i no longer get hoarse but I don’t know if that is something everyone should expect or if i’m just weird.

The amount of people I’ve met in the past few months dealing with CF has been absurd. There...

Thu, 13 Jun 2013 19:24:54 -0400

The amount of people I’ve met in the past few months dealing with CF has been absurd.

There was my professor who’s best friend has CF.

My friend/formal date who was tested for it and it was negative.

My classmate who has CF.

And my boss’s children have it.

I lived 20 years of my life knowing only my brother with CF. Then I found out another boy in my high school had it. Then I met the Tumblr community.

I don’t know how I feel about all of it. For those that know people that have it and understand, I am grateful. But I am weary of actually bonding with anyone with the disease. We are fragile. Not in the sense that we can’t accomplish things, but our bodies have decided to go on a course that we have no control over. Our deaths are tragic because the decay, the struggle, the defeat are all apparent. Sometimes I wish it could happen in one quick flash and it’d all end instead of watching my body deteriorate into mush. But in another sense, the deterioration is predictable and that can give us comfort. We know that this disease will more than likely kill us. I’ve always wondered if I’ve shaped my personality around the “fact” that CF will kill me. I wonder if as a result I am very risk averse, and I will never die in a hang gliding accident or driving a motorcycle at 100 mph because I am too afraid that something other than CF will kill me.

A few weeks ago, before school was out I was sitting on the porch with a friend. He looked at me after I had just coughed for a minute straight and asked me how I was doing (obviously referring to my health). I was honest and replied, “Not well.” To which he barely and lightly responded with, “It just isn’t fair.” And I can see how someone would think that- that it isn’t fair that anyone has to deal with this disease. But in a way, I am grateful. This disease has shaped my life in profound ways. It has made me compassionate, it made me a fighter, it made me realize that everyone has their own problems that I probably know nothing about.

There is something to be said about people’s attitudes towards life. It can definitely kill you if you let it. But I don’t intend for that to happen.

So the owner of the Financial Planning firm I am interning at knows that I have CF and knows what it...

Wed, 12 Jun 2013 00:05:56 -0400

So the owner of the Financial Planning firm I am interning at knows that I have CF and knows what it is because his kids have it and this makes understanding why I cough sometimes and do weird things like that soooo much easier. It makes me happy that my first experience in the work force dealing with my disease is a positive one because I know that will probably not always be the case. Yay.

I’ve been working out a lot recently. Feeling a lot better than I had been before. I was going to write a lengthy synopsis about how sick I’ve been and how I’m back on track but I’ll spare you the details. Working out has been very rewarding and I see the changes- not only physically but mentally and emotionally as well. I am glad that it is summer.

eatcleanmakechanges: Words to Live By….

Tue, 11 Jun 2013 23:55:04 -0400

eatcleanmakechanges:

Words to Live By….

I finally went to the Dekalb Farmer’s Market today and it opened up a whole new world of new...

Sat, 08 Jun 2013 23:07:22 -0400

I finally went to the Dekalb Farmer’s Market today and it opened up a whole new world of new things to try.

It was a little overwhelming so I got green onions as my new item of produce because I recognize them but I haven’t cooked with them yet. There were a lot of fruits and vegetables that I had never even heard of before and I just wasn’t feeling that adventurous today. I also got my first ever Georgia peach and a lot of other delicious things! I’m thinking I might make this a weekly trip. :)

It’s summertime again. I’m working out again. Sososososo happyy. Weeeeeeeee

Fri, 07 Jun 2013 21:39:42 -0400

It’s summertime again. I’m working out again.

Sososososo happyy. Weeeeeeeee

My brother got married this past weekend and the wedding was...

Wed, 05 Jun 2013 00:24:00 -0400

My brother got married this past weekend and the wedding was perfect. I will not even attempt to use any other adjectives because none of them will do it justice.

The top picture is the bride and groom (aka my brother). The next is the lobster we had for the wedding rehearsal dinner. The third is the vineyard where the wedding took place. The last picture is me, being the best bridesmaid ever. :)

I’m starting my internship tomorrow. Both my brother and I are growing up and it’s scary to think about. But ~~I’m~~ we are both definitely happy, and I think that is all that matters right now.

Meeting that boy and talking to him about CF got me thinking. A lot. We looked at each other and...

Thu, 30 May 2013 00:42:55 -0400

Meeting that boy and talking to him about CF got me thinking. A lot.

We looked at each other and said the same thing, “I would’ve never known. You can’t tell.” And that is the exact problem with this disease is that you just don’t know. Sure, he looked a little skinny and his voice was raspy but that didn’t really strike me as a definite indicator of CF. It was only when he wore the blue hospital mask to class that I realized something was going on with this guy. The hospital masks are my enemy, my scarlet letter, the only shame that is visible to the outside world of my disease. I am reminded of the countless hospital stays and the long hours and the depressing aura. I am reminded of how the disease controls me in ways that I couldn’t even imagine before. The pricks, the inhaled gases, the pills, the sick days, the shortness of breath, all the terrible times I’ve spent with the toilet. It made me flat out angry that this boy walked into class with a hospital mask on. Was he sick? What was he sick with? I didn’t want to sit next to him because he would probably get me sick. Why did he come to class if he was sick so that all of us would get sick too? Whatever he has, I don’t want it.

But I have it. And I deal with it. We all deal with it. It was surreal meeting someone and talking to them about things I only talk about with my doctors or my family. We talked about our doctors, our medications, our outlook on life. I have my brother to talk to about CF, but this guy gets me more. This guy is on my level if you know what I mean. When I admitted I wasn’t too compliant with my treatments and that I tend to go out with friends a lot, he nodded in agreement. I said, “I’d rather look back on this life and say that I really lived and did things I wanted to do, than to look back and remember all the treatments I did that prevented me from really living.”

I don’t care when the end is. Sure, the idea of not existing scares the hell out of me. But if I live my life right, if I do the things I want to do, I will be able to come to terms with my death in the end. I do not want to look back and say that I didn’t get to do this or that because I had Cystic Fibrosis. No. Cystic Fibrosis will not be the reason that I am held back in life. For those of you that want to live comfortable lives and stay close to your family and just simply exist until the end comes, that is fine. That life was never meant for me.

I don’t know what I meant to say in this post. I just kind of let it all go. It feels nice. My brother is getting married this weekend which probably also prompted some of this post. I hope you all have a good week.

Photo

Thu, 30 May 2013 00:19:52 -0400

I met a boy with CF today. We’ve been sitting next to each other unknowingly for the past 2 weeks in...

Wed, 29 May 2013 17:20:59 -0400

I met a boy with CF today. We’ve been sitting next to each other unknowingly for the past 2 weeks in our summer class.

So Cystic Fibrosis accounts for 14% of all lung transplants in the US. But COPD accounts for 27% of all lung transplants, and 80 to 90% of cases of COPD are due to smoking...

Wed, 29 May 2013 03:01:07 -0400

Yup I noticed that as well, decided to leave it out.

I wrote a long paragraph about why this shouldn’t really be concerning, but I’m not sure I want to get into this.

Long story short, CF isn’t the only disease that matters in life. Sorry.

Fun fact: Cystic Fibrosis accounts for 14% of all lung transplants in the US. (according to...

Tue, 28 May 2013 00:17:25 -0400

Fun fact: Cystic Fibrosis accounts for 14% of all lung transplants in the US. (according to Wikipedia)

Parents of dying 10-year-old girl challenge organ donor rule blocking her from lung transplant

Tue, 28 May 2013 00:13:33 -0400

Parents of dying 10-year-old girl challenge organ donor rule blocking her from lung transplant:

The parents of a 10-year-old girl dying of cystic fibrosis are fighting organ-donation rules that require adult lungs be offered first to adults, who are in less serious need than their daughter.

I finally got an internship!

Thu, 16 May 2013 01:52:40 -0400

After months of searching and interviewing I successfully landed an internship that will last for an entire year which means I already have something lined up for after I graduate! Woo hoo.

I didn’t just post this to brag about my internship, no no no, my life is not that normal.

The head of the financial planning company that I am working for has two kids with CF. Yup, that’s right. He’s a big philanthropist for the CF Georgia chapter as well.

I mentioned that I have a blog about CF and that it personally affected me during my interview. I wasn’t really sure where that would get me, but I guess it wasn’t a bad thing!

Photo

Sun, 12 May 2013 15:33:04 -0400

cfconfessions: “I’m so worried about college and having a roommate who doesn’t understand or people...

Fri, 10 May 2013 18:07:41 -0400

cfconfessions:

“I’m so worried about college and having a roommate who doesn’t understand or people just avoid me cause I’m sick all the time. I’m a junior in high school, so college is soon!”

-g00dvibes—g00dtimes

You’re gonna be fine I promise! There’s gonna be people like that everywhere you go, just gotta ignore them and find the ones that do understand. And most people just don’t even care (in a good way), they’ve got their own issues to deal with as well.

My dog was put to sleep Tuesday night because of his failing health. He came home for the first time...

Fri, 10 May 2013 03:28:23 -0400

My dog was put to sleep Tuesday night because of his failing health.

He came home for the first time on my 8th birthday. We grew up together. At 21 years old, I can’t imagine what my house will be like without him. I don’t want to.

As I was crying on the phone when my mother broke the news to me, she shared this quote and I think that this could definitely apply to pet lovers, but when she read it I thought of you guys, the Cystic Fibrosis community.

“We who choose to surround ourselves
with lives even more temporary than our
own, live within a fragile circle;
easily and often breached.
Unable to accept its awful gaps,
we would still live no other way.
We cherish memory as the only
certain immortality, never fully
understanding the necessary plan.”
-Irving Townsend

Coping with loss is difficult, and that is pretty much why I don’t reach out to as many of you as I should or kind of want to. For those of you that do reach out and form bonds, I respect you for your strength and hope that one day I will be half as strong as you.

RIP Zonny, you were a fighter till the end. And as long as I am around, you will never be forgotten.

Pretty Clavicles: Cysters and Fibros.

Thu, 09 May 2013 21:06:49 -0400

Pretty Clavicles: Cysters and Fibros.:

prettyclavicles:

I love ya’ll, I really do. And I have something to say.
When I started posting in the CF tag a year ago I made it known I wasn’t always compliant, and that I had a drinking problem, that I have smoked cigarettes and that I have done some illegal drugs. I made it known that I regretted it, and that…

cfconfessions: “I have CF but when I’m drunk I smoke crazy amounts. I know it’s bad for me but...

Wed, 08 May 2013 21:27:46 -0400

cfconfessions:

“I have CF but when I’m drunk I smoke crazy amounts. I know it’s bad for me but sometimes it’s just nice to have that relief and calmness only a cigarette can bring.”

-Anonymous

I would appreciate if people would chill out about this. I don’t condone smoking but judging this person a- doesn’t make you any better and b- doesn’t make them want to stop.

It’s their life, it’s their choice, so stop worrying about it because they probably aren’t worried about your life and your choices.

(Sorry I’ve had a rough day and I’m just in a mood to pick fights)