9-16-19

As I was writing the title for this post, I realized that we’re nearing the end of the year. It’s funny looking back to January 1st, thinking about how this years gonna be different, but it’s just another day.

Sure we celebrate and that’s all fine and dandy, but it’s like celebrating that a Wednesday is turning into a Thursday. Don’t get me wrong, I like New Years, staying up late and watching the ball drop, hanging out with friends and such, but why?

When I was in the hospital over New Years, from December 26th to around 1-2 weeks after that, nothing changed. Sure the fact that I was in the hospital is different but not significantly more than all the other times.

I remember the moments that happened. My mom, dad, sister and I watching the ball drop from the tv, listening to the live bands and such. My nurse bringing my sister and I glow sticks and watching fireworks above the treeeline from the 12th floor of the hospital.

Those memories stuck with me not because it was a new year, but because it meant something to me.

Right now I’m racked with anxiety. My mind cannot stop thinking about every hospital stay and every possible outcome that could occur . I have pfts at 9.

Right now I’m trying a second course of prednisone and another antibiotic, along with a new inhaler. My lung infection has just gotten worse and I’m coughing up a storm. Based on my numbers I might or might not get admitted.

Last time my numbers were fine, they’ve never been a huge concern or revealed to much on to what’s going on. The thing is, even if my numbers are good, well relatively good at least, I still might get admitted.

I think I’m at a point where I should get admitted. My lungs constantly contracting and forcing air out in big heaves is no fun, especially with my already limited energy. But Im on my third week of 10th grade, online, but stressful none the less.

That said I don’t want to get admitted. I admit(god I’m saying that word a lot) no one wants to get in the hospital. There’s the word want, as in I want candy, but there’s also the term used for when you’d like for that thing to happen, but maybe on a later date.

When I say this like, its a very flexible meaning. I’d prefer to get admitted as I don’t want this to get any worse, but I don’t necessarily want that to happen.

I’m probably making no sense at this point, curse brain fog. Summary, might(probably idk) get inpatient tomorrow for lung infection. On another note I just finished the son of Neptune by Rick Riordan. Round of applause for this author. 👏👏👏 it was so goooddd.

Anyways that’s all for now,

Bye. (Sorry I suck at conclusions or whatever for blog posts, and or but definitely also for essays)

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Update

Sorry I haven’t been uploading. My motivation is down, I have art block, and oh ya yet another lung infection.

My lungs obviously hate me. I don’t mean to be complaining or anything but…idk.

I have tightness, chest pain, joint pain, etc. Not to help anything I’m depressed so on top of not having the energy to do anything, I also have no motivation. I’ve literally been just playing Minecraft.

I will try to upload something(part of the reason I’m even making this post) even if it’s just sims or something.🤷‍♀️

Anyways hers a picture of my dog and me to make you happy. 🙂

That’s all for now,

Bye.

Hospital Admission

Yesterday i got admitted for yet another lung infection. After trying 3 different antibiotics we decided it was time to bite the bullet and just go in for a tune up. I am hopefully going to stay here for one week then do two weeks at home with the iv antibiotics.

I was able to get a picc today around 9:30. Just the typical mild sedation and such, though the aftermath was more painful than my other piccs. Ever since I woke up I’ve been in pain. It is manageable, but annoying.

Thats all for now,

bye.

Health Stuff

Friday I had yet another appointment with my doctor. Pfts then GI appointment.

Pfts

The same as last time. I talked to my doctor and I’m going off the previous oral antibiotic, getting put on inhaled tobymyacine antibiotics. I just finished a 5 day course of prednisone as well.

When my mom had been talking to her she asked if any of us thought we needed to be admitted.

If this doesn’t work I’ll probably go into the hospital. For the time being, at least for the next week or two I’m trying not to get admitted because of finals and such.

Though it will be nice to be in the hospital when I don’t have to worry about school.

GI

These appointments always leave me at a loss and frustrated. Confused definitely. Basically as a summary, I’m going to be getting a gastric emptying test done, trying to maintain/ gain weight, and such. We were talking about trying another medication I’ve been on but increasing the dosage. We’re holding that off for a bit.

Anyways that’s all for now,

Bye.

Friday Doctors Appointmnet

I saw my CF doctor on Friday. I had pfts done.

My FEV1 was 92, which is really good. I do close off my throat, which makes my numbers look better when they’re not.

It does annoy me though. Feeling this crappy and having this many problems breathing I was expecting them to at most be in the 80s. It just makes me feel like I have to validate for my symptoms, prove that they are indeed real. This already happens with having an invisible illness when people don’t understand that I may look fine, but I am indeed sick.

I got put on a different antibiotic. I’ve of course, have had side effects of dizziness and insomnia.

I lost 2 pounds since last month, and 4-5 since I got discharged at the end of March. I’m trying to eat more, but also eat healthier foods.

Updates will probably follow soon.

That’s all for now,

Bye.

Lung Infections are BS

Didn’t I just go through this like a month ago?

The answer is yes, and this is why lung infections are BS.

The repetitiveness is ridiculous. Like seriously it’s maybe been just more than a month since my last admission? I don’t know, all of them sort of blend together into one flaming ball of garbage that I just want to put down the disposal.

Oh ya and anxiety? Well that can just go jump off a microwave.

I just started a new pediatricians since I’m still idk young? Though I feel like I’m older than 15. Hospital stays, handfuls of medications, and cracking joints, oh my!

Ya you could say I’m sleep deprived.

Started taking an oral antibiotic, though they never help, I think they have to do that rather than just send me straight to the hospital.

I’m coughing a lot more. When I’m sick it’s usually dry cough with the occasional wet coughs, but now it’s 50/50. I mean it’s not as bad as others, but it’s still a pain.

I have around 3 weeks of school left, then, freedom! I was hoping to stay out of the hospital til summer, but at this rate where I can’t walk to the couch from my kitchen without being breathless for 10 minutes is a bit ridiculous.

Algebra sucks btw. Who thought adding letters would be a good idea. Just 4 years ago x meant to multiply, where as now it’s ‘oh find what x means or something.’

Anyways, in summary my health sucks, lung infections are BS, and anxiety can go jump off a microwave.

Well thanks for listening to my ted talk,

Bye.

May is Cystic Fibrosis Awareness Month

For those of you who are new to my blog, I have a genetic disease called cystic fibrosis(CF). May just so happens to be CF awareness month so I’m going to make a post about it.

Last year I did a post everyday, but with a lack of ideas for posts over the course of 31 days, I won’t be doing that.

I’m going to be sharing my journey with CF.

I was diagnosed at 3 months, along with my twin sister, Brianna. She had a blockage which led us to be tested for cf using a sweat test.

They implemented in 2010 that every newborn is to be tested. Well I wasn’t born in 2010, so it was a good thing my sister had a blockage or else we wouldn’t have been diagnosed so young.

So I grew up doing vest treatments twice a day, taking enzymes before every meal, along with nebulizers and other medication. My parents have said that there was a couple close calls of us being admitted when we were younger, but that held out until I was the ripe age of 12.

My sister was admitted through the ER in the beginning of 2017. That was the first time either of us had been admitted. She was in for 1 week, and got 2 weeks at home with antibiotics through a picc line.

It was only half through the year when I started getting admitted. It soon became a routine. Every three months, picc, one to two weeks at a time.

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Brianna and I spent new years of 2017 in the hospital. It wasn’t so bad. Our nurse gave us some glow sticks and we were able to watch fireworks from the window. There was cable on our rooms tvs so we were able to watch the ball drop and the performances.
Two admissions ago I had a blood clot from my picc line. I went to the ER the night before thanksgiving and got the surgery to replace it on thanksgiving. They had tried tpa twice and it didnt work. The last admission I also got a blood clot, but the tpa worked.

My sister rolling around. We always binge watch the office when we are admitted. All 9 seasons.
Ive had so many ivs. My veins suck, and by the time im able to go down to OR ive had 2-3 ivs.

I still get admitted every 2-3 months. Right now i’m dealing with nausea and weight loss issues. I got a g-tube last year, but i’m not able to use it because of the nausea.

Thats all for now, for more information about CF look at cff.org.

Bye.