Late Night Thoughts

Welcome to another, high quality post! So tonight I’m laying in bed with a headache, which I’m pretty sure is from stress, and a crap ton of anxiety. I mean why does it always have to pick the worst times, aka night, to attack me. I mean when you think about it anxiety is attacking you, hence why it’s called an anxiety attack. Wow, can you tell I’m sleep deprived or what! Anyways I finally decided to step up as a amazing sister and visit my twin in the hospital. I honestly feel bad about it but whenever I go there not cf related, aka anything but clinics, I get bad anxiety and am lucky if I’m not on the verge of an anxiety attack. You see how I deal with it is to push it away, like whenever I know I’m starting to have an anxiety attack I’m just like “nope not right now, not today, not ever” and then boom! I’m more anxious…no, but in reality I suck at dealing with it.

Stress

Stress

Stress

How how I’m stressed…

I had a sinus infection, now I’m pretty sure I have a lung infection, school is-well school, and I am missing my twin. You hear that Annabelle! I’m showing affection for once! Wow I’m out of it, okay…

I’m probably going to post this and then go back and read it when I’m semi-less out of it and be like, what the fudge? Anyways, I think I say anyways too much. Anyways! That’s all for now, enjoy the meme at the top, bye!

-A&R

Most Common Misconceptions/Comments/Questions on Cystic Fibrosis

So I got all these from other Cfer’s via Reddit, the Breathe in podcast by Gunnar Esiason and the Salty Cysters, also thanks to The Cfer’s Guide for some ideas.

https://soundcloud.com/user-996750830/breathe-in-72-2019-cystic-fibrosis-march-madness-bracket

https://cfguide.wordpress.com/

  • Are you okay?
  • Do you want a cough drop?
  • Do you want some water?
  • Are you contagious?
  • You’re always sick!
  • Do you have the flu or something?
  • But you’re so young!
  • How long have you had it?
  • I hope you get better soon!
  • Can’t you just get a transplant?
  • So its like asthma?
  • Oh I have ____ so I get it!
  • I wish I could eat like you!
  • I wish I had your weight problems.
  • I knew someone that had that. They died.
  • Have you tried essential oils?
  • Maybe it’s because you’re taking to much medicine.
  • You should drink more water.
  • Have you tried _____ diet?
  • You don’t look sick!
  • I know, allergies are really tough this year.
  • Think happy!

Just some quick Late Night Thoughts

I’ve been having problems expressing my feeling lately. I’ve tried writing poems and blog posts about what I feel but I can’t seem to put it out into words. My anxiety has been growing and I don’t know why, maybe it’s because of health. I feel like my life is surrounded by my cystic fibrosis. My parents always say don’t let it run your life, control it, because in reality it’s only a small part of it. Which is true in some way but it’s so hard when it feels like it’s taking over.

I think about what if I didn’t have it, and then I promptly freak out. If I didn’t have it I don’t know where I’d be. I would probably still be dealing with some mental health issues because honestly what teen isn’t these days? I’d be in public school, not go to the hospital every month or so, not be on so many pills or have so many responsibilities. But I wouldn’t be as caring, understanding, so grateful of everything. I try to look on the bright side, because in reality if I didn’t have Cf I don’t know where I’d be or honestly who.

Spoon Theory

So in honor of Rare Disease Day I’m going to write about the spoon theory!

As most of you know I have cystic fibrosis which is a genetic rare disease that has no cure, it’s also known as cf or 65 roses. These past two years have been hard, my health has started to decline and I’ve developed depression and anxiety. I’ve read a lot of stuff and one thing I discovered was the spoon theory. It’s a way for people with chronic illnesses to explain their energy levels in spoons.

Say I have 12 spoons in a regular day

It takes me 1 spoon to get out of bed

2 to take a shower

And so on

When I’m having a bad day I’ll have less spoons

Say I wake up with 5 spoons

I have to prioritize what I’m going to do

If I use more then I have it means I’m working on negative spoons, which then takes spoons out of the next day

Hospital Diary’s

Day 1; Monday

Admission Day

I got admitted today. It started off with going through meds, a nose swab, getting vitals, and going down to get X-rays. I didn’t have to get pfts because I got them Friday. After this I got a iv, the person was great and I didn’t have to get poked twice. I did some treatments, started antibiotics and all was well.

Hah, just kidding I didn’t get any sleep!

Day 2; Tuesday

Picc Day

Okay so I actually got a picc today, yay!👏

My day started off right where I left it off, trying to sleep, I barley got any sleep and since I got my picc at 1 I was sleep deprived and didn’t have any energy due to not being able to eat. I was really dizzy and I got a headache that wasn’t going to go away.

I was happy to get my picc because I was worried my iv was going to blow soon and I just wanted to sleep. Oh I was not expecting this.

I had a reaction to the anesthesia and got really nauseas. I had been shivering from being cold, I got three blankets and took a nausea med. I had to get my blood sugar taken just to see if that’s what was causing it but it was in normal range (I do not have CFRD, aka cf related diabetes.) I had gotten nauseas last time but it wasn’t this bad. I got a fever and kept taking naps for the rest of the day. By night time I couldn’t do my feeds and I just tried focusing on getting good sleep.

Day 3; Wednesday

Visiting Day

Today I feel better, well better than last night. I got pfts today. They’re better but that’s because I closed off the back of my throat, but let’s just say they’re better because I’m suddenly not sick. Anyways one of my friends visited too. We walked around the hospital and she brought us candy. Vanessa if your reading this, thanks!

Sorry if I haven’t been uploading the first few days here have been rough but I will try to upload.

-A&R

Admission

So you read the title, I’m getting admitted again.

I’m not happy about it but it’s for the best

I’ve been feeling pretty crappy

I had clinic Friday. I’ve been on many antibiotics and a steroid and they haven’t helped. My doctor started talking about my trapped air and how there’s a underlying thing going on causing this cycle of breathing problems other than cf or a part of it we haven’t thought about

So she suggested a new inhaler. I was about done after she said that. I feel like crap and all I want to do is get better not go on more meds, when I heard her say “and if you feel that your ready to be admitted just tell me” I instantly said I feel ready to be admitted

I’m sick of being sick

Although I have to go in it helps and then I feel better for a couple months before I feel bad again

But at least I’ll feel better

I’ve honestly given up on oral antibiotics

As soon as I’m sick I just want to get a admission over with and feel better

Yes there’s a underlying thing causing all this to happen but at this point I just want to do what makes me feel better, not dig into the ditch more

I wish I could just be better

I have to get a bipap machine because I breathe to shallow at night which can cause fatigue

I did two sleep studies

When I was wearing the mask for the second one all I could think was “I’m not going to be able to do this at home”

It’s horrible honestly

Although I only get air in when I breathe in it still sucks

I know I ‘have to get used to it’ but how am I going to when I can’t sleep because it’s so uncomfortable

It’s not about the mask on my face

Because I can deal with a mask it’s jut the air part

Don’t take this for any advice I might just be blowing this out of proportion but that’s just how I’m currently thinking

I’m getting admitted sometime Monday and am going to be in around a week or so depending on how I feel and then do the rest at home since it’s nearing thanksgiving

Honestly I’m so stressed

It’s going to be my first time doing online school in the hospital, I don’t know how it’s going to work out

I know I won’t get a picc for a few days because they always schedule it for one day and have to reschedule it for another

Having people constantly go in and out along with having to do so much like 4 treatments a bunch of iv antibiotics, PT, pfts two times a week

Also I’m having so many problems with ivs like whenever I get one I have to get poked twice and they never last over two days

Anyways now I’m just ranting, I’m sure it’ll be fine

-A&R

Five Feet Apart

So this is a new movie coming out called five feet apart, it’s about two young adults who both have cystic fibrosis aka the thing I have. When I first hear about it it was through YouTube. I saw a fellow Cfer reacting to it. Of course I had to watch the trailer.

So thoughts

I feel like you can’t fully rate this unless you have Cf. It’s showing the reality of our lives and it’s a tough thing to watch sometimes. I’m going back and forth with my thoughts. I watched the trailer everything seems to be correct. Now there’s some medical shows that I’ve watched where it’s complete bs. Like the show red band society and grays anatomy. Bu this seems pretty accurate.

When I first watched it I felt like I didn’t like that they were making a cf movie. I knew that although it’s spreading awareness it sends a fault in our Stars vibe. I knew that Hollywood is just going to dramatize it a lot of people aren’t going to focus on cf but just the romance and drama. After hearing some other Cf’ers thoughts I feel better about it. It’s going to spread awareness and it gives people an idea of what we go through.

Let me just say the only thing I found infuriate was the title, it’s six not five feet but I guess it sound better😂