Hello I am a 24 year old woman with cf. I was just wondering if anyone is working full time? I am not currently working. My husband takes care of me and is paying all of our bills alone. He would like for me to be able to help out and try and get a real job. I'm affraid of working with people that would be wondering why I cough all the time. I'm affraid of getting fired for having to take time off becasue I'm sick that day. I do feel pretty good most days and could probably work a full time job. Another one of my concerns is insurance, would a company's insurance cover all my medical bills. I am just wondering if there are cf'ers that are working at a full time job and if you have problems with insurance? Anyone that can give some insight would be much appreciated. Thanks...
Is anyone able to work a full time job?
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I don't work at all but I am married too. My husband pays everything. Although he doesn't mind me staying home I wish I could help out. But if I were to get a job I would loose my medicaid. And it isn't worth getting a job when Hubby's insurance only pays 80% on everything until you meet their dediuctible but even then all meds are still 20% for us to pay out of pocket. The thing with insurance companies is that they don't cover pre-exsiting conditions unless you have been covered non stop. This means you have to be currently on an insuranc e acceptable to the "new" insurances qulifications. Some insurance compaines take medicaid or government assistance as previous coverage but some don't. It is something you'll have to ask them about before signing up for insurance....no need to sign and pay for an insurance that won't cover you. Then you run into problems with an insurance carrier not wanting to cover you due to "pre-exsisting" condition clauses even after they said they will cover you and you have sent in all required information about previous coverage with other insurance. I have been fighting with my husband's insurance for over 8 months about this. I have sent in dozens of letters and certificates of previous coverage and they still send me letters about their "pre-exsisting clauses" and not covering a certain bill. UGH!!!! ok sorry a little venting going on here but i don't want to sugar coat it and say it will be fine, blah blah blah. It doesn't always go so easy with insurances. even if you get it they will still try to get out of paying somthing. But you probably already know most of this. Just before you get a job realize your options: Do I really want a job? If you have medicaid or government help: WIll it kick me off of these programs? Will getting a job hurt my health or probably make it for the better? Pros and cons to part time versus full time...Will this particular job oportunity allow me sick leave-time off for dr. appointments? Will they understand my condition my mean special treatment i.e) sick leave, more breaks for food/treatments etc.? (not everyone needs special treatment but if you need to eat every few hours or need a treatment in the middle of the day or have O2 your employeer will need to know these things) Just go over everything, every concern. Maybe a socia worker at your cf clinic can help you with insurance things. But talk to your husband about everything to pros and cons so he knows what your thinking and you know what he is thinking. That is just always a good idea. Hope I helped in some way.Amanda
I am 42 w/cf and I do work full time. I have to work to keep insurance for myself and my husband. As far as coughing goes - I was just totally honest when I was hired. I told them all about my CF in my interview and told them they could ask me anything at anytime about it. I would rather that they know that they are not going to "catch" my cough. For the most part all of the people that I work with are extremely supportive of my cf. I NEVER take advantage of that. I don't ever call in sick if I am not, and I absolutely take the time that I need to get better if I am sick. I am not saying that it is easy all the time. I have to get up at 5:30 AM so that I can do my vest before I go to work, and by the time I come home I am tired, but it is worth it. I also think it really helps me to be active and working so I don't concentrate on CF and being sick. I work with people who have cancer, leukemia, MS etc in their families so we all support each other.
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I am a 27 and I work full time. I have since college (going on 6 years now). Alot has to do each person individually. I have never really had a problem with any emoployers until my current one..Company is great but boss is a butt (but I am not worried about that either because the company's large enough I know I have protection under the Americans with Disabilities act. Depending on comany siz on what protection you have with the Americans with Disability act and the Family Medical Leave act. Those and benifit s are some of the advantage into looking at a larger company vs a smaller buisness.As I have gotten older and my lung functions has decreased ( around 30% or 1 leiter) working full time is harder than it used to be. But if you are able to I beilive it to be well worth it. The key is to look for a low stress enviorment. I have never had any problems with explaining the cough or Dr apts or missing days until now. I usually even continue to work when I am on IV, though I may not always work 8 hours a day then. My current problem is my boss is complaining about me missing so much work because I am on IV and my Dr requires a weekly visit to do them a home. However, I could easliy go on our compan'y short term diablility plan and there is nothing he could say about it. Another key component to look at is benifits. Most insurance can not exclude you from preexisting conditions if you were covered by an insurace program at the time you started be covered nby the new policy. Diffrent companies have diffrent levels of coverage, it depends on their plans. Group plans are also a way to get life insurance when you are non insurable else where. Also, some companys offer Short term disability plans and Long term disability plans that you can get coverage under. Some may have a waiting periord for preexisisting but others do not. The main thing about all insurance sign up for what ever you can when you are first employeed. Its easier to get the coverage then instead of later.Myself, I messed up on not getting the supplemental diasabiliity plan when I was first hired on at my company ( i thought I would never need it). It means a diffrence of getting 40% and getting 60% of my salary if I have to take advantage of the plan. The beauty is that after the intial waiting periord (sometimes set by company or insurance carriers) most with CF would instantly qualify if you decided you could not handle working. And many times if you leave under long term diability then you can keep all your diffrent insuances by continuing to pay your portion of the premiums. Health and life. Not all employeers have such great benifits. But it definatly something to inquire about.
Thank you so much for writing back. It's good to know that there are other women out there. My husband and I are not well off and most months we are struggling to pay our bills. I would really like to get a job and help out so that we can afford to have things, but I am scared. I am on ssi and medicaid and I'm affraid that if I get a job and give that up and things don't work out I won't ever get it back. I have had to put up such a fight for it now as it is and if I give it up and later down the road need it they would be like but you were well enough to work then. I'm not sure if it is worth it for when I am really to sick to work later down the road. My husband understands and is really supportive but he would like to have some extra money, which I understand becasue so would I. We have been together for 8 years now and he has seen me at my worst. But he also has seen that I am in pretty good health most of the time and on most days the worst thing through the day is my coughing fits. I do believe that right now I could work and kinda want to but is it worth giving up my medicaid and ssi for something that might not work out. Most of the time I forget that I am sick. I have a 5 year old son without cf and he is very active. We are like any other family and just trying to make it in this world. I would like to think that I could be like all the other working mom's out there and have a job and then come home and take care of my family but I'm affraid it will make my health worse. My son is only 5 and I want to be with him as long as it is possible. Do you think that is is worth giving up medicaid for a job? Thanks....
I don't want to tell you what to do but I will tell you my experience. I have ssi and medicaid too. I get about $100 a month plus medicaid. I am married also. But recently my husband and I had to get a divorce because he would have gotten a raise and I would ahve lost medicaid. It is just a paper to us saying that we are no longer married. In our hearts we are still married and in peoples eyes we are still married and in God's eyes we are still married. Let me explain the reasons why we did this:First the governement considers us basically one person if you are married. SO like you have income but one of you doesn't eat or have bills.Second we weighed all possiblities first: IF i got a job with insurance at least paying 80% of bills could we make it? the answer no. my pay check would all go towards co-pays and such plus some. Since i would have no longer had medicaid. Also my husband was offered a promotion (before we considered the divorce option) it would have meant a little over 30,000 a year. My husband did calulations and still since his company only paid 80% we would have been in worse shape then we are in now paying co-pays because the promotion would have meant loosing medicaid too. Even if i got a job after his promotion. We also considered my health at this time. Yes i am healthy enough to work. But personally i stress out easily which makes me get sick alot easier. For our situation we could not afford for me to get a job. Sounds weird but true. Meds are very expensive and even with co-pays on them we couldn't afford for me to loose medicaid. With medicaid paying all my medical bills at this time we are still strugling with bills, but its much easier than the alternative.Back to us getting the paper divorce. Because of everything we had no alernative. Even fighting to keep medicaid would have been really hard as you know. Getting this paper divorce did cost us money for lawyers fees. But in the long run it helps us out. I keep medicaid and because I will be considered as a single my SSI payments will be raised, by how much I don't know. I am not saying to get a divorce. Its hard to explain but for us its was the last resort. Its awful but the government's rules lead us to have to make this choice. I am not bashing the governement but their medical assitance rules are very hard to understand. Look at all your opitions. Maybe even ask a lawyers opinion about this if you have to. I know all to well what its like having the husband work really hard and your at home and bills are pilling up. But we ahve to do what we have to. I almost had a job that paid under the table (in cash to where you don't have to report your earnings) and that would have been wonderful but it didn't work out. If you could do that. Maybe babysit friends kids and get paid in cash or even personal check. But for me personally it wasn't worth getting a job and loosing medicaid. Unless the job had insurance that paid 100% then go for it. if you need to contact mee write to akcooper_01@hotmail.com
Could someone explain Medicaid to me? Sorry for sounding dumb. My husband has CF and is the main bread winner. We know that in the very near future our financial picture is going to be dreadful, and aren't sure how to prepare. Can you own a home and be on medicaid? Does medicaid refuse your meds or treatments? Do you owe for what they don't pay? I read an article the first of this year about a Mom with a sick kid who used medicaid to pay for his medicines and she wasn't sure it was going to be funded that year -- then what? How long does it take to apply/go into effect? What's the limit on earnings? On your spouse's earnings? Will medicaid pay for a transplant? I completely understand about the deductibles and copays being unbelieveable. We automatically owe $5,000 every year, not including our copays for meds. But if we didn't have his prescription coverage, we'd go bankrupt. He woudn't get much on disability. I don't know how we'd survive. How long does it take to get approved for disability? Have any of you had a hard time getting it?Sorry for all the questions. Thanks for your help.
Those aren't dumb questions at all. I was logging on to ask them myself. I'm going to graduate college in the spring, and although I'm going to start grad school, I don't know what to do after that. I had always naturally assumed that I would get a job and work and get married like everybody else. But after reading these posts, I'm worried. No one ever told me that I couldn't work if my husband did, or that I could get disability. It's like as if we aren't busy enough trying to STAY ALIVE, the government has to diminish our quality of life as well. Debbie22 yr old w/ cf
Hi. I am a cf and currently working parttime in australia (being australian). My defacto partner pays most of the bills and the mortgage on our house. I earn prbably 30% of the wage. I am so fortunate to live in australia i think. All my doc appts are free, i live 2000km (yes, 2 thousand!) from the closest cf clinic and get free air flights to the hospital with free doc, dietician, gynaecologist, anaesthitist for cvc drip, everything. My medications cost $3.70 per month per diff medication, and nothing for the ones they give me on the hosp ward, inc syringes etc the only thing i pay full price for are my alternative treatments, yoga and acupuncture. needless to say you guys are contacting your local members of parliament or whatever to lobby for better conditions and pensions. if my partner and i earn less than $AUS1017 per fortnight (2 weeks) i get a small pension also. You guys have a stingy, miserable govt more interested in war than domestic health it seems. Get into them - the squeakiest wheel gets the most oil! something to do while at home getting bored to tears because you can't afford to work.
Hello. My name is Bristy, and I am 26 years old. I am a female, married 6 years to a wonderful husband, and I have no children. I am a full time Middle School Science teacher. I teach 5th and 6th graders, and I average about 90 students per day. I love my job, and I really believe that my job is one thing that keeps me healthy. Just thought I'd put my story out. I am a new subscriber, and I hope to hear lots of great stories.<img src="i/expressions/face-icon-small-smile.gif" border="0">
I'm sorry. I had to respond to these horrible stories. Look, the fact is, I work full time and I have insurance available to me at my job and my husbands. The government is not trying to kill us all, as some writers suggest! It can be tough, and Lord knows I've dealt with bills and medicine and all the jazz. But, you have to set a goal, work for it, and I just believe you can work it out. It may not be easy, and our government is not perfect, but the drug companies and insurance companies are more to blame than the government. I have outrageous medical bills and medication bills, but I have two choices: pay or don't pay. No question is dumb, but I think I have figured one thing out. At first, if a hospital or whatever called and demanded X amount of dollars, I'd say yes and worry later. Now, I give them the facts. They sometimes don't like my facts, but they always see it my way. Most of them know our problem. And, as long as they see we are trying, and they will give a little. Please don't get caught up in these conspiracy theories. There is hope. I will never own a mansion, and God knows I'll probably always struggle because of these bills, but at least I'll be here to go through it. Better than the alternative.
It sounds like fear is keeping you from work, not CF. I know it is scary to wonder if you will fail if you try, but nothing is worse than wasted potential! You should give working a shot while you are still healthy enough to work. If you are too afraid to start full time try part time. Giving yourself motivation to get up in the morning is so important for all people, CFers included. Working gives a person a sense of pride and accomplishment and the paycheck is always a plus. If you do try and can not continue to work because of health then at least you tried and gave it a shot and you will never have to worry about what-ifs or maybe I couldas. Just my 2 cents...Emily
Well said Emily, Let me add this... should you ever become too ill to work... There are two types of Social Security: Social Security Supplemental Income (SSSI) and Social Security Disability Income). The difference between the two is that SSSI is basically a set amount, while SSDI is based on what you paid into the system based on how much you paid in- through employment. In the state that I live in, if I had never been employed, I'd be receiving approximately $400 monthly... since I spent my healthy years working, I qualified for SSDI- and based on what I paid in, receive a little over $1300 monthly. I should add that I did have health insurance when I was working and like so many others, accrued many medical bills ... some of which I was able to pay, some not. So in addition to the many benefits that have already been listed by some folks i.e., self esteem issues, real world perspective, connecting with people etc etc, there is also a financial motivation for trying to do so... remember, if all else fails, you can always get one kind of SS or the other. Plus, if you get yourself that college education, you could land yourself a nice desk job that you'll be able to perform for many years if you're not in the best of health...unlike manual labor- which I made my living at 
Just my two cents... Good luck and God Bless!
Just my two cents... Good luck and God Bless!-Sorry, I should add that SSDI currently allows me to earn an additional $750 per month without affecting my disability status... not sure what the numbers are for SSSI. So my $7/hr job that I work 20 hours a week at gets me an additional $560 per month. I currently have health insurance through my wife's employer, so medicaid isn't an issue. I'll also never live a castle, but riches are defined by so much more than money ;-)