Gross, embarrassing things that come with CF!

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scm1226

Guest
These posts are sad. Very sad. I do not have CF but my 13 month old daught does. I look at this site for guidance not only for me and my family but specifically for her. Unfortunately this site is not monitored appropriately and I am not going to post anymoree. If I was a moderator I would have both of you banned for not being humble. I work in a school and I can not make kids be friends but I can make them be kind. Be kind damn it be kind!!
 

megan420

New member
Hi everyone! I was so excitted to see that my topic got 37 replies, I thought no way! Now that Ive read through them all , Ive gotta say im a lil dissappointed at the fighting!! Some one mention that we all have CF and are on the same team as each other, CF against us!~!!! On a good note tho Im very happy to see so many people who wrote comments pertaining to the orginal post. This is going to help me so tremendacly, THANK YOU!!!! Keep em coming!!!
 

iefisherman

New member
incontinence...yeah it happens to guys too. I think its something to be looked into. I have posted before and its more common than people think......i think.
 
I dont post a lot, but I do read all the posts. This example is maybe not gross, but I still get embarrassed when I cough all the time on the bus or train surrounded by people (I live in a metropolitan area), or at a meeting, movie, or other function where everyone else is quietly paying attention and here I am just coughing at every other word. I have gotten good at timing coughing to applause in some situations. lol I used to be much more embarrassed in high school (aren't we all).

Also I read up on every other post and the infamous 12.23 post (I agree with Champ by the way) and I completely agree with everyone regarding the fighting.
 

beautifulsoul

Super Moderator
I agree with Jenn. I really don't want to lock this thread. Bill, Champ and whoever else is typing on and on about things that are not related to the original post, please stop. If you wish to continue then, do so via PM's.
 

beautifulsoul

Super Moderator
Again I will say his OP was dated 12-23-2012 at 11:23 am. If you are not going to research this issue then you just DO NOT KNOW WHAT IS GOING ON. I am not very interested in your opinion under any conditions but if you express it from a basis of ignorance of the history, I am even less interested.

Bill

Sorry Bill, people are JUST NOW notifying me of this thread...
 

Starfall99

New member
I don't think anyone mentioned this one: Sometimes while I'm sleeping my feeding tube gets disconnected, and the nutritional supplement keeps pumping until I wake up in a cold, sticky puddle. Nothing like having to get up, wash off, get changed, and change the sheets in a semi-concious stupor in the middle of the night. Hate this! I also ruined a mattress this way before I got a protective mattress cover, and once the tube fell on the floor and I didn't wake up until supplement had soaked so deeply into the carpet that my room reeked of rancid formula for months. Good times!

Eliana
 
Sara I completely understand the peeing yourself. Hubby thinks its funny to play around and hold me down in the AM. He knows when I say "Im gonna pee on you" I probably am not kidding. And a coughing spasm when your sick....yep plan on changing panties!

Also, I horrible smell when I use the bathroom or fart. As the hubby said "I didn't think ladies were supposed to be able to smell that bad!" #silent but deadly

I know I can't be the only lady with the problem of thick yucky discharge you know where! It doesn't smell like roses, its nasty, and I've heard it doesn't taste very pleasant either!

The crap that I cough up eats away at the enamal of my teeth. I swear the dentist thinks I don't brush or something, but between the bad breath and bacteria that is constantly in my mouth from what I cough up, I HATE the dentist!

And I so could go on!
 

SaraNoH

New member
Well continuing on with the original topic....

My most gross/embarrassing moments was when I was hospitalized for a reeeeeally bad obstruction. I had an NG tube placed to pump my stomach for a few days but it stopped working at one point. So I started puking up... you guessed it... crap. pretty much. And... enemas! Come on, who here's had an enema?? Aren't they just super fun? One more reason to be nice to nurses and CNAs...

Oh, and don't forget all the times my MOTHER has shared my embarrassing medical shenanigans to my classmates (she's one of my college instructors). Ah, well, what're you gonna do?
 

azdesertrat

New member
The awful, stinky gas has got to be the most prevalent annoyance.
When I had my old lungs, the gross mucous I was constantly hacking up & spitting had to run a close second.
When my gut 'goes down' the nasty bowel production is pretty nasty.
I sometimes can't believe my Wife keeps me around considering all the nasty crap that goes along with CF- just glad she does...
 

azdesertrat

New member
I know the feeling!
In 23 years with my Wife, she's seen & had to do things no Wife should ever have to see/do.
She's slept of a 'window sill' in my hospital room for just short of a month post-transplant.
She's literally had to wipe for me when I've had multiple IV's in both arms & hands.
She's amazing; most assuredly a 'Keeper'.
Glad you have one too...
 

Melissa75

Administrator
I'm resurrecting this thread because today...
I rear ended someone because of my desperation to get to a toilet. Literally got in a car accident.
No one was hurt. The other driver was going slowly at a green arrow left, I was sweating and clenching and adjusting in my seat and was less than a mile from home. I wanted to make sure I got through the light so I was following closely, she suddenly stopped in the middle of the intersection...the arrow was still green!.. and I hit her. :(
When we pulled over, all I could think was now I WILL explode in my pants. I guess adrenaline helps though because I made it home.
 

hannahj1d

New member
the smell of passing gas/stools
the funny tasting mucus
coughing so hard you get phlegm on your clothes/elsewhere
coughing so hard you pee
just coughing so hard you do anything embarrassing

once not long after I had moved in with my boyfriend I really needed a 'clean-out' so about morning 3/4 into it I was having a really bad coughing spasm whilst going to the bathroom and you all know how HOT it gets when you are coughing non-stop so I got undressed and was coughing so hard I was almost puking and my boyfriend heard me. Thinking something was wrong he came into the bathroom to help me....I was SO embarrassed, I mean I had coughed in front of him before (obviously) but I had always waited to go home to use the restroom so this was a shocker to him. He just brought me the febreeze and I knew he was a keeper.
 

triples15

Super Moderator
I'm resurrecting this thread because today...
I rear ended someone because of my desperation to get to a toilet. Literally got in a car accident.
No one was hurt. The other driver was going slowly at a green arrow left, I was sweating and clenching and adjusting in my seat and was less than a mile from home. I wanted to make sure I got through the light so I was following closely, she suddenly stopped in the middle of the intersection...the arrow was still green!.. and I hit her. :(
When we pulled over, all I could think was now I WILL explode in my pants. I guess adrenaline helps though because I made it home.

Melissa!

This scenario is SOO familiar to me! The sweating, the clenching, the yelling at the cars in front of me to GOOO so I can get to a toilet! ;) So sorry you got into a car accident! Ugh. Glad the adrenaline made it subside until you got home, and so glad no one was hurt! And I'm sure the accident was considered your fault, but what the heck was the other driver doing stopping on a green light!!??

I had a similar (but quite different) scenario yesterday....... So I live in tornado alley, and we were under a tornado watch. I walked out the store and the clouds looked VERY menacing and it was a funny color outside. I thought, "wow, I better get home in case we need to get to the basement". Well just as I was starting up my car, the "urge" hit. The cramping, clenching, sweaty palms, the whole nine. Ugh. I knew I wasn't going to make it home, so had to stop at the grocery store. I ran in and sat down and the thought crossed my mind "I could die on this toilet because of my damn digestive system!". LOL. I can laugh about it now, but I was pretty nervous at the time!

Anyway, just wanted to share!

Take care,

Autumn 32 w/CF
 

Melissa75

Administrator
Autumn,

I can just imagine your store toilet/tornado/death scenario. Ugh!

In my accident, we pulled over into a office bldg parking lot. I was planning to run (w/my 7 yr old) into the building to use the bathroom while the woman stood by our cars--how odd a request would that have been--but she said she thought her car was fine. I barely glanced at mine (later saw it wasn't fine), but really all I could think of was, "yes! i'm getting home now!" Although the woman must have had some sense that she'd done wrong to stop suddenly like that, the accident was my fault. I owe one to the universe, no doubt.
 

CyrilCrodius

New member
Coughing spasms that come before you realize you are having one and sputum goes everywhere....have had this happen a few times, it's so embarassing.

In high school, I was on the bus drinking a bottle of Boost once and OH!

A wild cough appeared!

I spat out a mouthful of Boost everywhere on the seat in front of me. Luckily no one was there. LOL but many people saw it and were wondering wtf happened. "I coughed."
 

CyrilCrodius

New member
Yeah surprise projectile mucus is a good one.
There's the cleaning-out-the-mucus-cup-at-the-end-of-the-day-or-whatever-you-put-your-mucus-in moment. Some days it get's stuck in there even after flushing with water and then this long strand is hovering and there's nothing to do but wait for it to drop in a moment of total silence and suspense.
Have this theory that my mucus is mostly harmless one by one but together forms a supermucus that forms evil plots. It doesn't want to leave the cup because after it's left the bowl what harm can it do? But it keeps me awake at night that it all goes the place after flushing and then one day..



Le olde Russian roulette!


Erm... use a cheap plastic bucket/trash can and put water in it. You won't have to clean up anything. Throw it away when gunk builds up on its sides and/or let it sit with water and a drop of bleach overnight once in a while.
 

CyrilCrodius

New member
Champ:

I can see why many things would be an embarrassment to you. Like you I do spend time at my computer. I come here to get and give information. After 72 years I thought it would be good to check out my family tree so I spend time on Ancestry.com. Retirement has been good to me.

Unlike you, I attended college and got a real degree, a BS in Industrial Management, oh I got an associates degree along the way but I didn't "graduate from college" until I got my BS. Champ, can you spell MBA?

I worked in Industry for more than 30 years (longer than you have been alive) before starting my business. At age 70 I retired. Now I can stay home. I don't need to go to the office when I was in so much pancreatitis pain it was impossible to stand up straight.

In some ways I envy you, laying around on your Mother's couch, collecting welfare and eating bon-bons. No payroll to meet. No customers to chase for outstanding accounts receivables and certainly no heavy lifting. While your life is a waste and you need some small amount of self-pride into your sorry existence feel free to attack me. I'm just glad to be able to help you.

Bill


Wow... what a fucking huge dick you are. Shut the fuck up you asshole. I can't believe what kind of fucking moron you can be. You are yourself a CFer but yet, you are too fucking stupid to understand that within this disease, some people are luckier and some are much less lucky with genetics?

You have no fucking credit to take from your achievements. What you did are things any normal people do... And you must be very close to normal since you're fucking 70+ years old, which means that your CF was very very mild, or else you would have died very fucking long ago, probably during your infancy, at a time when even people with moderate CF died because treatments for CF sucked. So you wouldn't have had the opportunity of doing any of the crap you listed here. And what are you doing now? Taking credit for doing shit normal people do and having the fucking front to shit on a kid who might have been less lucky than you and to use him to prop yourself up over him? What kind of fucking sorry, sick, pathetic asshole bastard are you?

You don't fucking deserve that life of yours if you're such an asshole and see no problem with it, to the point where you think it's justified. I don't fucking care how long ago it started with him, you fucking started it on this thread and was totally fucking unwarranted. What you said to him is just a huge fucking no. What you mocked is the situation of many CFers who read these forums and what you said can be shattering. You should probably leave the forum or just limit yourself to reading, we sure don't need a dick like you here. You jumped on the guy first in this thread, it was totally unwarranted.

... Just like many other interventions I've seen from you on the forum, one of which was directed toward me, jumping in with remarks that were totally out of the blue, unwarranted but most importantly, dicky and condescending. Someone even messaged me about it once because you did the same kind of shit to them.


If you want to help, do everyone a service and shut the fuck up.


AND WHAT THE HELL ARE MODS DOING? Delete that crap!
 

CyrilCrodius

New member
Jenn:

You misunderstand. I don't "feel slighted", I feel that I am under a constant personal attack. You need to read his OP.

Bill


You mean this?

http://forum.cysticfibrosis.com/thr...nfection-cycle?p=918099&viewfull=1#post918099

I actually agree with his intervention. You are an asshole. You jump on people, make rude, condescending and unwarranted comments very often and I actually think you're not being told enough, considering how you seem to think that your dicky interventions are legitimate and that you're the victim. Try not being a dick. Then people might stop calling you out on it and ""attacking you"".
 
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