Ok, where to start.
First off, im new to these forums, and this is my first post. I've been reading alot of the topics so far, and everyone here seem to have some helpfull stuff to say.
Soooo, I come asking my question now.
At the age of 20, I find myself unable to perform a job for more then 30 hours a week (that's at my best).
I get run down easilie, and I get infections often.
I just recently got out of the hospital 4 months ago for a two week visit for IV antibiotics, and im already back down to where I was before I was admitted into the hospital.
I've done jobs with heavy lifting, I've done jobs with mediocer labor, and im currently working out of the house doing the orders and price upkeep for the company Jetro/Resturant depot, for the mid atlantic region. (yeah, it's a coorp job)
The job has demanding hours, dosen't allow sick days (or my dad works till 1am if I can't trying to make up for it, when he already starts at 5am), I can't get insurance from it without them giving me more work to do, and dosen't allow me a solid schedual to do my meds.
Now, it sounds simple, but when you're really sick, and it happens often, then you know how hard any job can be. Even just keeping up on your treatments (nebs, vest/pt, running, etc) can seem sometimes.
It takes a steady hand, and speed, to get this work done in the time frame needed, and when im sick, I don't have much of that at all. So even this job seems tough at times.
I'd say the worst part of the job is the stress it puts on you. You have 2 hours to get 6 hours of work done, and paid crap for it.
Well, with the amount of times I've just been stuck in bed peroid due to having really bad infections, uncontrolable coughing (yeah, I know, huff if ya can and sniff to stop the twitch, or you'll break a rib that way. Sadly, it can't always be controled so easilie).
I'll sometimes sleep for near 18 hours straight when I have a bad infection. Heh, I'll even wake up after about 10 hours, stuff my face, then pass out for another 7. (my parents think it's funny as hell that I can do that)
So yeah... More so to the point now. I'm on COBRA at the moment, my job won't give me insurance because im not 100% reliable (they want to fire me, but my dad won't let them. He's pretty high up), I make around $800 a month with my hours and over $400 goes to a monthly health insurance payment (and the cost is constantly going up).
Sure, it sounds like I have enough to keep lingering like this, but we have so many backed bills from my surgerys on my stomach and nose, that even my dads income plus mine, plus help from our grandparents, isn't enough! Hell, we don't even have money for food sometimes for atleast a week. (fun weeks)
Oook, im straying again. Not good, lol.
Anyways, I want to get on disability or something. Anything that will give me an income that I can't lose, plus insurance that I can't lose.
I was told when I lived in Arizona, that we could get it, and I would get insurance that would cover me very well.
My doctor here, in jersey (Douglas Holsclaw), tells me that I won't get actual insurance from it for two years.
That would be two years of no doctors visits, no hospitalizations.
I asked him, how the hell does that work? What do they expect me to do?
My doctor said that they expect you to suffer (yeah, he literally said that).
He says that my position is a bad one, but I have to try and tough it out.
I guess, the main thing im asking here is... Does anyone else here with CF have disability or anything of the like?
Do you guys have any insurance problems like mine, or trouble holding jobs to get it?
One way out I see if taking online courses, to get back under my dads insurance. That would only last until I was 25 though, and I can tell you right now, my conditions getting worse as I go, to the point where im probably going to be hitting up the transplant list at that age. Meaning I won't be working once that's gone, and lose all my insurance for it! weeee! lol
Anyways, im sorry to bring a more depressing seeming life to the board here. It looks like most of you are doing really well, and that's really good. It just sucks to be me. <img src="i/expressions/face-icon-small-tongue.gif" border="0">
So yeah, if anyone can give me some advise on how disability works for them if they have it, how they get their insurance when they can't work, and all that kinda stuff, I would greatly appreciate it.
Thanks guys.
First off, im new to these forums, and this is my first post. I've been reading alot of the topics so far, and everyone here seem to have some helpfull stuff to say.
Soooo, I come asking my question now.
At the age of 20, I find myself unable to perform a job for more then 30 hours a week (that's at my best).
I get run down easilie, and I get infections often.
I just recently got out of the hospital 4 months ago for a two week visit for IV antibiotics, and im already back down to where I was before I was admitted into the hospital.
I've done jobs with heavy lifting, I've done jobs with mediocer labor, and im currently working out of the house doing the orders and price upkeep for the company Jetro/Resturant depot, for the mid atlantic region. (yeah, it's a coorp job)
The job has demanding hours, dosen't allow sick days (or my dad works till 1am if I can't trying to make up for it, when he already starts at 5am), I can't get insurance from it without them giving me more work to do, and dosen't allow me a solid schedual to do my meds.
Now, it sounds simple, but when you're really sick, and it happens often, then you know how hard any job can be. Even just keeping up on your treatments (nebs, vest/pt, running, etc) can seem sometimes.
It takes a steady hand, and speed, to get this work done in the time frame needed, and when im sick, I don't have much of that at all. So even this job seems tough at times.
I'd say the worst part of the job is the stress it puts on you. You have 2 hours to get 6 hours of work done, and paid crap for it.
Well, with the amount of times I've just been stuck in bed peroid due to having really bad infections, uncontrolable coughing (yeah, I know, huff if ya can and sniff to stop the twitch, or you'll break a rib that way. Sadly, it can't always be controled so easilie).
I'll sometimes sleep for near 18 hours straight when I have a bad infection. Heh, I'll even wake up after about 10 hours, stuff my face, then pass out for another 7. (my parents think it's funny as hell that I can do that)
So yeah... More so to the point now. I'm on COBRA at the moment, my job won't give me insurance because im not 100% reliable (they want to fire me, but my dad won't let them. He's pretty high up), I make around $800 a month with my hours and over $400 goes to a monthly health insurance payment (and the cost is constantly going up).
Sure, it sounds like I have enough to keep lingering like this, but we have so many backed bills from my surgerys on my stomach and nose, that even my dads income plus mine, plus help from our grandparents, isn't enough! Hell, we don't even have money for food sometimes for atleast a week. (fun weeks)
Oook, im straying again. Not good, lol.
Anyways, I want to get on disability or something. Anything that will give me an income that I can't lose, plus insurance that I can't lose.
I was told when I lived in Arizona, that we could get it, and I would get insurance that would cover me very well.
My doctor here, in jersey (Douglas Holsclaw), tells me that I won't get actual insurance from it for two years.
That would be two years of no doctors visits, no hospitalizations.
I asked him, how the hell does that work? What do they expect me to do?
My doctor said that they expect you to suffer (yeah, he literally said that).
He says that my position is a bad one, but I have to try and tough it out.
I guess, the main thing im asking here is... Does anyone else here with CF have disability or anything of the like?
Do you guys have any insurance problems like mine, or trouble holding jobs to get it?
One way out I see if taking online courses, to get back under my dads insurance. That would only last until I was 25 though, and I can tell you right now, my conditions getting worse as I go, to the point where im probably going to be hitting up the transplant list at that age. Meaning I won't be working once that's gone, and lose all my insurance for it! weeee! lol
Anyways, im sorry to bring a more depressing seeming life to the board here. It looks like most of you are doing really well, and that's really good. It just sucks to be me. <img src="i/expressions/face-icon-small-tongue.gif" border="0">
So yeah, if anyone can give me some advise on how disability works for them if they have it, how they get their insurance when they can't work, and all that kinda stuff, I would greatly appreciate it.
Thanks guys.