[sisters-with-cysters]

Sorry for the lack of posting lately.

Things got a little busy. I'll try to have a post up at least every few days.

[sisters-with-cysters]

Inept Doctors

As time goes on, I've been starting to see just how inept some doctors and nurses are. Recently, Carly's port stopped working, and upon going to urgent care, some of the people didn't even know how her port worked--so obviously they couldn't help her. Instead, they just gave her a pic line in her hand. Now they're saying it may be a few days until she even gets a call from her doctor (I forgot which doctor) to get an appointment and fix it. It's just frustrating for me because they're supposed to be the ones to help her, aren't they? They're supposed to know what's wrong, and make it better. It make me feel absolutely helpless, because obviously I have no idea what's wrong, and I can't help her. And now, the people who are supposed to do something can't even help.

[sisters-with-cysters]

Hey look at that, this is my beautiful sister.

See that necklace she's wearing? It's this gorgeous handmade thing from Etsy. There were two in stock, and I bought one of them, and I think my mother has the other one. I wish the artist would make more though, because they're like...the prettiest things ever, basically. She wears it everywhere.

Anyways, story time.

A few nights ago, Carly and I went out to Archie's to get ice cream. I, of course, was taking like...17 billion years to figure out what I wanted (cotton candy or java chip?). The cashier kept staring weirdly at Carly, then finally said, "Is that a lung?" Carly was kinda confused, then looked down at the necklace and was like, "What? Oh, yeah, it is." And then it was awkwardly quiet until the cashier was like, "Any reason why you have a lung necklace?" Now, normally Carly just says she has a lung disease, because lots of people don't know what CF is. However, this time, she said, "I have Cystic Fibrosis." Ironically enough, the cashier was also in nursing school, and they'd just recently been learning about CF. Funny, hm?

[sisters-with-cysters]

Updates

I think this is all I'm going to do on the blog for now, but here's what's new.

See that little green box in the top left corner of the screen? 

Click on that, and...

Wow look at that! Interactive chatting! This means that you can send messages in real time. Do you know what that means? It means that you can talk to people who are on the blog, and get responses right away. The best part is that you don't need any sort of account to send or receive messages.

Another new thing that'll help with the interactiveness of the blog.

If you click on a specific post, you'll see a new "comment section" at the bottom of the post. 

If you don't have a livefyre account (which most people don't), that's totally okay. You can post the comment as a guest. All you need to do is put your name and email address in, and you can post as a guest. This will help people who don't have a tumblr account, and who don't want to make one just to respond to a post.

[sisters-with-cysters]

Inspiration

I don't think Carly understands just how much I look up to her. Ever since I was young, she was always my inspiration in life. In class, when asked who I wanted to grow up to be like, I would always say my older sister. No one ever really understood why. But I did.

When I would wake up in the morning and get ready for school, I always got to sleep longer than she did. Why? Well she had to do her treatments, of course. She had to take her pills, test her blood sugar, make sure to eat a good breakfast, and then--on top of everything else--there was the whole, you know, actually getting dressed and ready for school. 

During school, I could sit and talk with my friends, eat what I wanted, go where I wanted, do what I wanted. She had to take her enzymes, test her blood sugar, take insulin if necessary, and still watch what she ate, just in case.

After school, I would get home and hang out and do my homework and then relax and chill. Maybe I would do some chores or something. She came home and maybe had a bit of time to do things before she had to take her afternoon pills, and do her afternoon treatments and her vest. 

It didn't hit me until I was about 10 years old, but Carly and I had to do all the same things in life, except she had a lung disease to keep in check, and I didn't. She had to do all the same homework, all the same schooling, all the same chores and day to day life, but in her "spare time" she did treatments. 

Now, that isn't to say that she had no life. God knows she always had a better social life than I did. 

She has always inspired me to want to do more with my life. Because if she can do everything she does and still retain her sanity, then I have absolutely no excuse.

[sisters-with-cysters]

Alrighty, so...

I'm adjusting things and adding fancy things to the blog, which means I've been spending the past hour and a half screwing around with HTML and CSS coding and all that. But if this works (crossing my fingers here) I'll have a comment bar added to the bottom of my posts, so that there can be (wait for it) actual discussions! Woo! I'm also going to (attempt to) add a chat bar so that people can (wait for it) talk with live people online right then!~ Hopefully all this works, because right now it's kinda just me making posts and that doesn't make for much of a forum, now does it?

Anyways, bear with me if the blog suddenly looks really not right, because chances are I just screwed something up.

~Hannah

[sisters-with-cysters]

Wooo, intro post time.

There's an about me page and all that, but it's not really the same time.

Anywho, my name is Hannah. I'm 17 years old, and I'm a carrier of Cystic Fibrosis. My elder sister, Carly, is 18 and has CF. I'm in too many fandoms, and I spend my nights staying up late reading, painting, or playing guitar.

Honestly, I'm not sure what will come from this blog. I want to be able to talk with people who understand what I, as a sibling of CF, am going through.

Now, that isn't to say that I go through anything even close to what Carly goes through. However, her disease does have an impact on my life. It's become a normal part of life, but it's still nice to have people to talk to.

SO. If you are a sibling of someone with CF, or if you have CF and have siblings who want people to talk to, let them know that my blog is completely open for communication!

While it does say "Sisters with Cysters", sisters with Fibros, or brothers with fibros or brothers with Cysters are totally accepted as well! 

This blog isn't about me and my journey. It's not even about Carly and hers. It's about bringing together a community of people. I've seen so many forums and blogs and places where people with CF can be in contact. However, I have yet to see a place where their siblings can talk to each other and have a support group like that. 

Anyways, now I'm rambling. Welcome to my blog, come make it yours as well!

~Hannah

[sisters-with-cysters]

hi. i am 19 and i have CF. if there is anything i can do help bring awareness let me know. (i just got my transplant list pager!)

Hi there! If you're involved in the community, even just mentioning it to people. Ask if they have siblings, tell them to check it out, anything like that. Word of mouth moves things along so quickly it's insane. 

Also, congratulations!

[sisters-with-cysters]

Hey!

So this is my first ~official~ post on this blog. For now, I'm still trying to work out kinks and fully complete the navigation and all that, so bear with me. Hopefully word about this blog can start getting out so it can run better!