onesaltygirl

[onesaltygirl]

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. 

[onesaltygirl]

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?

[onesaltygirl]

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.

[onesaltygirl]

Friendly reminder that chronically ill bodies are beautiful too! All of them! No matter the size, shape, scars and medical instruments!

[onesaltygirl]

AKA existing.

[onesaltygirl]

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.

[onesaltygirl]

Hello. Do u know of any conditions that are similar to CF? Im getting tested for it this weekened and if it turns out i dont have it i just wanna know what else it could possibly be

The biggest one I know of is PCD (primary ciliary dis... something?) which is... basically CF but not.

So in CF, there root problem is in the cell membrane where the NA/CL channel doesn’t work and causes mucus in the body to be thick and sticky. This makes it hard for the mucus (and all the germs stuck in it) to be cleared out of the body, causing infections and other problems.

In PCD, it’s the exact opposite: the cilia (aka the little hair like structures that move mucus in places like the lungs) don’t move in the right way or they don’t move enough. The end result is the same thing: mucus does not get cleared out of the respiratory tract and results in chronic infection.

PCD is treated almost identically to CF in that they use anitibiotics and physical therapy (the Vest, if you’ve ever heard of it) to fight infection and try to clear mucus from the respiratory tract. The key difference (from my understanding and experience) is that CF almost always has Gastrointestinal involvement and overall has more impact on the body/organs other than the lungs because it is a defect in every single cell.

Other than PCD, I’m guessing there is some sort of chronic lung infection diagnosis? I’m not entirely sure but it’s possible. I also don’t know you’re symptoms, obviously.

And I hope your test comes back the way you want it! (CF or not... what ever answer you want to hear... I hope you hear it!)

[onesaltygirl]

Me: *is super busy for like 2 years straight and falls behind on almost all of my annual testing*

Me: *gets one summer off and decides to enroll in a clinical study*

Me: *also decided to make a ton of appointments with all my doctors to get caught up on my annual testing*

My doctors: all of your conditions have worsened. Here are new drugs for you. Start them immediately.

My Research Specialist: -_-

[onesaltygirl]

The doctor I went to last week was looking over my history and he said “Endometriosis?” and I said yes. And he said “Is that just your speculation or have you actually been diagnosed?” and I was like “I have been cut open three times for it so I hope it isn’t just speculation.” and he just looked at me and said “Females tend to diagnose themselves” and without missing a beat I said “Well I hope you do your job so I don’t have to.” 

[onesaltygirl]

Hi. Do you know id its possible to have CF without having problems gaining weight? (I have other conditions) and i dont struggle with gaining weight although i have every other symptom? Do you know if thats possible?

I’ll say this much: not everyone with CF has weight gain issues. It’s different for everybody and yeah, the majority have a hard time gaining weight, but not all. I personally don’t have a problem with weight gain at all.

I will also say that a diagnosis for CF later in life is rare, but not unheard of. There is, however, at least one condition I know of that has pretty much every pulmonary symptom of CF without some of the GI issues. So if you feel like you might have CF, it’s worth bringing up to a doctor (pulmonologist if you can) and they might have more insight on those other diseases. Or they could do a DNA test to see if CF is even a possibility.

All that to say: it’s definitely worth looking into, even without issues gaining weight.

[onesaltygirl]

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.

[onesaltygirl]

You ever get weird/funny reactions when you take your pills in public? I take 12 creon, vitamin D, multiple pills to help with coughing, etc., and once a classmate reported me to a teacher for “popping pills”. Like she really thought I was doing hard drugs on a crowded picnic bench surrounded by adults.

Omg I had a hard time with taking my pills in high school because people thought they were something sketchy or whatever. One time I dropped a creon on the floor and my friend picked it up real quick like she was covering for me or something 😂 I’ve found that in the adult world, fewer people notice. Or perhaps I’ve just gotten worse at determining which stranger glares are in reference to my coughing and which are directed at my “pill popping” oops

[onesaltygirl]

Hi! Are you okay with me asking some questions? If not lmk and ill stop. Whats the best diagnostic process for CF? Im going in two days and they said its my choice but i dont know which one to do

Questions are totally welcome! But the only true diagnostic processes I know of are genetic tests (to see if the CF genes are present, normally done of parents from my experience) and a sweat chloride test.

If you’re asking which of the two of those is the better option, a DNA test is pretty much fool proof. The genes are either there or they aren’t (a little more complicated if you’re testing the parents, and a little less straight forward. Often used in combination with the sweat test) . But sweat chloride tests are also very reliable and the most common way people are diagnosed with CF. I’ve had many sweat chloride tests in my life, and they sound/look way worse that they are. They sorta tickle, actually (imo).

I’m pretty sure I had both done when I was diagnosed (my parents were tested and then I got a sweat chloride). But tbh I don’t remember. I was less than a year old, lol.

[onesaltygirl]

i think it’s really important for abled leftists to be conscious of how they frame issues that specifically affect chronically ill and disabled folks. i’m not gonna get into like, how a lot of leftist utopia fantasies see “eradicating disability” as a good thing because others have already talked about that better than i can, but i mean more like with things like how pollution is the fault of corporations, not individuals, and individual lifestyle changes aren’t enough to reverse climate damage or prevent climate disaster.

idk i’m just thinking about how the campus i’ve been working at this summer has signs by every elevator about how you should take the stairs to conserve electricity, and signs by the drink machines with photos of sea turtles that say how they don’t offer plastic straws because of ocean pollution, and how i’ve been repeating to myself all summer you are not just a drain on the earth’s resources, you deserve to exist, and how fucking angry that makes me.

and i know a lot of leftists point out how those kind of things aren’t much better than platitudes when we should be focusing on action against the fossil fuel industry, but i feel like a lot of conversations about that just totally ignore how environmental guilt is absolutely crushing so many disabled people’s spirits and sense of worth in an already ableist society.

i guess i just wanna say that like, if you ate off of a styrofoam plate today because you didn’t have the energy to wash dishes, i’m so glad you ate. if you threw recyclables in the trash because the recycling bin is on the other side of the building and you couldn’t walk far enough to make two trips, i’m so proud of you for keeping your space clean. if you needed to use a plastic straw today, i’m so, so sorry for all the bullshit that’s been directed your way lately, and i’m so proud of you for enduring it.

if you use non-reusable diapers, if your medication requires a lot of packaging, if devices you need to stay alive are single-use, if your assistive devices use a lot of electricity, if you can’t take public transportation, i’m so glad you’re here, i’m so sorry this world wasn’t built for us, i’m so sorry we’ve been made into a scapegoat for corporate greed, i’m so sorry that most days it feels like no one is defending us.

[onesaltygirl]

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.

[onesaltygirl]

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:

[onesaltygirl]

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.