It’s 2 am and I need to be up at 6 in order to make it to my drug study appointment on time, then I’m going to spend literally 10 hours at the hospital doing different tests and being monitored (it’s the first day of study drug so they have to make sure it doesn’t kill me). Oh, and I’ll probably have to get stuck like 10 times for my blood draw because my veins like to be Little Bitches™ and refuse to give blood on the first 9 tries.

But in the end I’ll get $300 for this alone so like… I’m cool.

Love having to argue with every single administrative worker at my hospital in order to go back to the pulmonary waiting room (which is closer to the clinic and also less busy which is safer for me bc germs) instead of sitting in the super packed general waiting room. Like seriously, I says in my file that I’m supposed to be permitted to go to the back and wait there and yet they always try to get me to stay outside in the big waiting room. I know it sounds stupid and small but it causes me so much anxiety to have to ask for an accommodation that should definitely be given without any conflict. It’s a hospital for Pete’s sake! If we’re not accommodated here, where will we be accommodated?

Hi! I know I’ve been gone for a looooong time, but I’m doing fine! I promise! College is just… wild. I’ve been up to my ears in work for 3 years but, hey, I’m almost done! I’m graduating in the spring! And then I’m moving. So, things really haven’t settled down or anything, but I’m definitely going to try to get on here a bit more. 

Which leads me to the whole reason I got online. I have a question. 

@ all the CF people who live with significant others, families, or roomates… where do y’all do your treatments? I’m just curious. Like, do you have a little set up in your bedroom (and if you share your room with your S/O… how does that work?)? Or the living room? If it changes or moves around, where do you find yourself doing your treatments and what causes you to do them there? 

I’ve only ever lived with my parents or completely alone in a studio apartment, so I’ve never had to really make decisions like these. I’m just super curious how other people have structured their treatment spaces as well as treatment times to accommodate their lifestyle and the people around them. 

Fellow CFers:

I have, once again, been struck by the common cold. And I cannot for the life of me find a cold medicine without a cough suppressant. I know I’ve bought one before, but I can’t remember what brand it was. Do any of you have a go to medicine for a cold that doesn’t stop your cough?

Y’all

So I’ve been doing nebulized medications like my entire life. No biggie. Super used to them. So used to them, in fact, that it never occurred to me that mY ROOM GETS SORTA FOGGY AFTER I FINISH THEM BECAUSE HELLO NEBULIZER MIST. I simply never noticed this.

Until my RA came knocking on my door just a few minutes after I finished my treatments and got a good look at my foggy ass dorm room and jumped to the only conclusion she could given that I never told her I had CF and she’s an RA in a dorm full of dumb college kids: I’ve clearly been smoking some shit.

I mean, I don’t blame her. But I do find it hilarious that my ass had to drag my nebulizer machine down to the housing manager’s office and to prove that a 30 minute long breathing treatment produces that much steam. And now I’m, like, hyper aware of how misty my room gets and I’m like paranoid.

Ain’t college grand.

Love that I get the strangest looks for wearing a face mask at the hospital. Like if I wear it in public, some people get weird, but if I walk into a waiting room at the hospital with one on (because I know they aren’t going to let me wait in a separate area like they’re supposed to and I want at least a little protection) and everyone just loses their shit. Literally, a woman in the corner whispered “oh, she’s sick” when I sat down.

This is a hospital. Y’all are sick too. THATS WHY IM WEARING IT.

Spoonie thoughts of the day: There’s a really bad storm coming so I better get my treatments done in case we lose power. Also wouldn’t hurt to switch my meds to the mini fridge (runs on backup battery) and set all of my pills for tonight and the morning right by my bed so I don’t have to stumble in the dark. I should also make sure to unplug all of my medical equipment in case there’s a power surge. Never mind that if we don’t lose power and I have to go around plugging in and returning all of these things to their rightful place in the morning it will take up a good chunk of spoons and definitely make me late to work, because these are potentially life saving (plus money saving) measures I have to follow just to be safe.

I literally just want one area of my health to be normal. The thing nobody wants to say about being in life-saving medications literally from birth: they can deteriorate your unrelated health so quickly! I’m tired of going to specialist after specialist and simply being given a shrug and told “You have this problem. It’s probably caused by your medications.” Dentists, neurologists, and now eye doctors. I’m 20 years old and being looked at for glaucoma, likely caused by my chronic hypertension (and possibly worsened by my body freaking out over my wacky blood sugars), which is likely caused by my daily medicine cocktail.

I just want to go to a yearly check up with some doctor, some where and not be told bad news. I think it’s giving me a complex.

Me: I know my body so well. Watch this.

Me: *confidently eats a very small meal and only takes my snack dose of creon instead of my meal dose plus pertzye*

My stomach:

Have you ever gotten mucus stuck in the back of your throat and like you can taste it and feel it but it just doesn’t seem to want to move so you stand in front of the mirror for 45 minutes alternating between gurgling salt water and making yourself cough with the hopes that the damn mucus will either come out or at least be swallowed because anything is better than tasting that nasty shit all day…

Just me? Oh.

*game show host voice* It’s time for another round of: Is this anxiety or is it lung pain?

Them: I was born in the wrong decade! I wish I was alive in the 80s! Or the 50s! Way better times!

Me, a mere CFer: If I had been born even 10 years earlier, I wouldn’t have lived past my 5th birthday.

Okay I was getting an IV put in earlier and I made a comment about how I can smell the saline when they put it through and it reminds me of my childhood (a lot of IV antibiotics that I thankfully haven’t been on in a long time).

The nurse gave me the weirdest look and didn’t understand how I could smell something being injected directly in my veins.

So, to prove I’m not crazy, I’m asking my fellow spoonies. Do any of you smell saline when it goes through your IV?

The holidays are so hard for spoonies. Please be kind this year