CF and Employment

[anonymous]

I was just wondering how most people with CF handle/tolerate full time employment. Do most people with CF work full time? Or do they resort to part-time work. I myself have CF and struggle; I cannot hold a full time job. Is this a common theme among others with CF?

Ive also found its very difficult, well actually near impossible, to find a place of employment that allows an extremely flexible work schedule to accommodate people with CF so they can work around their medical issues. Have any of you been lucky enough to find that flexibility in your employment?

Do most people with CF usually go on SSDI and at what age have some of you applied and got accepted? If not on SSDI and cannot hold a full time job, do you constantly face financial struggles and how have you handled them? Just looking for ideas&.

Signed: Curious

 

[JenniferNJ]

Hi,

I work part time in an emergency room about 16 hours a week. I spend most of the time doing patient care but if I get to tired, I switch and put drs orders in the computer or make calls to doctors or discharge papers whatever as long as I sit down.

My work is very, very, good to me and have been since I was dx. Anything I need I get and my boss always tells me that I need to call out sick more often and take better care of myself.. I truly am blessed...

I also go to Nursing school full time. I am currently on summer break. During the school year, I don't do anything but study, school work, and regular work. I live with my parents who cook for me, clean and food shop. They also get all my prescriptions that need to be picked up. If I am not feeling well they would even do my laundry. I could not go to school full time or work if all of my other responsiblities were not taken care of.

This summer was a big flop for me though because I tried to do an externship on a different floor that required me to work, 3 12 hour shifts sometimes in a row. I lasted two and half weeks and was then put in the hospital myself. I haven't tried 8 hour shifts in a while but I doubt very highly that I could do 5 8s either. My lung function is pretty good though, if it werent for all the other health issues I had I personally think I would be able to work full time.

I am just now trying to regroup and figure out what I am going to do now that I know I can't work full time for to long without getting sick and it is quite discouraging.....

Jennifer

 

[JazzysMom]

I worked from time I graduated high school in 1986 until 2000 when I had to choose something after getting extremely sick. My last job was in our local hospital so it was very hard not too get sick. There were a few times that I was out for lengthy periods. The first department I was in at the hospital was when I was usually the sickest. It was in the coldest, dampest part of the basement. My supervisor in that department suggested I look for another position. I was hospitalized twice during the 15 months I was in that department. I moved to Admissions (in the direct line of infection) for the remaining 11 years. I had my times, but they were very accomodating. I was an employess who worked any holidays, didnt complain when I was giving something extra to do etc. I think that is one reason why they worked with me. I was good at my job. They really didnt want me to live & to this day tell me that if I ever want a job to let them know. Unfortunately there isnt enough of me to be a Mom, Wife, Employee & Care for myself. I dont have the ability to balance it all. I was ok until I had my daughter. That extra that I needed for work was being used for my daughter. It was an extremely difficult decision to resign. I felt like I was giving up & continued to feel that way for at least 1 - 1 1/2 years after quitting. My doctor just emphasized that I was shifting my priorities. I agreed with her, but I felt like the CF was taking control & it sucked! I realize that my health was an issue without my daughter, but I couldnt let myself get continuously sick because I had to worry about her & my husband & of course myself. I applied for SSDI & was initially denied, but appealed it & was approved. During the appeal we filed for bankruptcy. We were use to living on 2 incomes & no longer had it. We had a car reposessed. It really was a stressful time. I wouldnt answer the phone because of the creditors calling. I tried a few consolidation places & our problem was no matter what figure they came up with, we just didnt have it. We went on special budgets with the electric & phone companies so we would never get turned off. We applied for HEAP to pay for the heat in the winter. We did everything because we didnt have a choice. I am proud to say that 5 years later we own a home, have new/used/reliable vehicles that are paid for & money in the bank. My husband has a fabulous job that pays for schooling as he need it. I try to counsel people on finances because I have been through it all. The problem I have found is that many dont know what "basic needs" are vs "wants". I was 33 when I was approved for disability.

 

[wuffles]

I did university full-time with a part-time job for three years after school and I have been working full-time in a government job since February. At the moment I'm not finding any hassles except I need more sleep than most people but I am really quite healthy, touch wood. The government in Australia is a very good place for people with disabilities to work, so I'm not sure if it's the same in the US. I get quite a good amount of accumulating sick leave and can take personal or unpaid sick leave as well. The set ours are 7 hours 21 minutes per day and they are very flexible (you can build up extra time by only having half an hour for lunch, or starting half an hour early so you can have other days or part-days off).

 

[anonymous]

Thank you Jennifer, Melissa, and Emma for sharing your stories.

Jennifer, It's hard enought just to have CF, I can't image have all those other issues as well. I so glad your place of employment and your family offer so much support. I wish you the best of luck in your future employment. Maybe you'll have luck where you're working at now since they already know you.

Melissa, sorry to hear you've been through so much. I don't know how you made it through it all, but, I give you so much credit. I too am like you and have been a very hard worker at my jobs; always go the extra 5 miles above others so they would be more apt to keep me employed and tolerate my flexible work hours. But, it still didn't seem like I could get promotions or things like that, which I'm sure had to do with my working schedule, as my work ethic was/is excellent. I did end up getting laid-off from my last employment as they had cutbacks. I was frustrated and disappointed that I was chosen because I worked so hard at my job and was told I was very appreciated, but I in some ways can see their point, they would need to lay off people that are not full time employees first otherwise there would probably be other employees pretty mad and the working environment would not be good. It is now very difficult to find a new job that pays well enough as well as be flexible from the start as they don't know me and my work ethic yet. Sure I can find plenty of part-time jobs, but the financial burden is horrid. Most part-time jobs don't pay that well. Most professional jobs are full-time and they aren't as flexible.

I am single, own my own home and don't have financial support from my family (although moral support from mother), that's it. So I do know about "basic needs" from "wants" as I still haven't lost my home. I'ts very hard though trying to balance health, work, finances, personal needs, time for relationships, etc. I have found creative ways to live very cheap. But gets very difficult financially. Sometimes I feel like I could go crazy; the pressure from others cause I "look good" so they don't understand why I don't work full time, the financial crunch I'm always under, etc. I feel guilty at the thought of SSDI as I know I have a lot to offer intellectually even though physically I'm limited. Is this a pretty common feeling among others thinking about SSDI?

Emma, as far as the government in the US... I'm not sure if it's in all gov't agency's, but I have heard them talk about diversity in the work place a lot, but haven't seen much of it happening. It could have just been the couple of places I had exposure to. Also I think it depends on the job as to how much flexibility is alllowed.

Thanks everyone, this gives me some insight..

Curious

 

[anonymous]

I have been along the same route as alot of you. Im only 23 and have been made to quit working. I was an office manager for 3 years and then ha to go down to part time b/c i would run myslef ragged. Then it got to the point that things wernt going good and i needed to quit. My husband and i went from two incomes to one. Thats when i went into the hospital and had went into respitory arrest when they flushed my port. It ended up putting me on a vent and in ICU for a day. After that my doctor wrote a letter for me for SSD and of course i got disapproved in july but after that in aug i finally got approved. So great im thinkin. But then now a year later im a 23 year old with cf, my husband and i had filied bancrupcy b/c of the bills and have divorced and the goverment expecpts you to be able to provided for yourself on SSD. Your rent, food, utilities, ins, meds everything. i dont get it. How can they say that im sorry you sould be able to live on your own with this expensive condition. Thank goodness for casoprophic caps on ins. But i cant complain, i have a car that can get me from point a to point b, when it wants to, lol. I wake up every morning and i have a great boyfriend that gets up to help me run my meds everymorning.

 

[anonymous]

Thanks for sharing your story. Sorry to hear you've had it so tough as well. I guess I'm starting to realize many people with cf seem to go through financial struggles.

Congrats on the boyfriend and I wish you the best for the future.

Curious

 

[anonymous]

I would like to share my positive experiences with working. I am 53 years old and have worked full time since I graduated from college. In every job that I have had, people have been supportive and I have learned how to let them help me. My experiences include being an assistant diretor of the State's Medicaid agency and for five years was the policy advisor on health to the Governor (isn't that ironic!!). I currently develop grants and policy initiatives for the Medicaid agency. When I've been hospitalized, I have people bring my work to me and I use a laptop. When I'm on IV meds, I have the doctor try to dose them so I can do them early in the morning and later in the evening, and I go to work for as close to 8 hours as I can. I teleconference in to meetings so that I can stay involved when I can't physically be there - even while I'm in the hospital. On days when I feel great, I might go in a little early or stay a little late or skip lunch. Then on days when the mornings are a struggle, I go in later or go home earlier. I cannot say enough about how important it is to learn to use technology to your advantage and to let people help you. My co-workers at all of my jobs have offered to help in any way they can, and I find things they can do for me. When it's a bad day, I let them go next door and get me lunch from the cafeteria so I don't have to expend energy walking over there. I take my portable oxygen everywhere when I'm using oxygen. It took awhile to get over being self-conscious about it, but now it's just like taking a pen and paper. My two children and my husband are incredible at helping me at home.

Working has played a large role in my well-being. I love being able to help so many others access health care. I couldn't do it without everyone's support. I have no idea how long I will be able to work, but I feel blessed by my good fortune so far. There are so many ways that offices can accommodate people, and I encourage you to help them make it work for you.

 

[anonymous]

Thank you for sharing your story..... It's nice to hear success stories like yours which also offers great tips. You are very fortunate to have such job flexibility and also for the helpful people around you.

Thanks again,
curious

 

[anonymous]

I have been working full time since I graduated college about six years ago. I've been pretty healthly until the last couple of years. I've had three jobs since graduating and all but one have been supportive. My last two employers have been great, allowing me to take any time off needed while still being paid. My current employer is fantastic, I live in Boston right now, but am moving back to CT where I'm from. I gave my notice and my boss told me I could work from my home in CT for as long as I wanted. I can make my own hours, he does not care when the work gets done, as long as it gets done. I couldn't believe it and am very grateful.

 

[lovingBenandCambree]

I am 25 years old and am currently on SSDI. I have worked since I was 14 years old. 2 years ago I was working at a great job helping people with disabililties find homes and then help to maintain those homes and keep everybody happy. Anyway, during my 1 1/2 years working there I went in the hospital 4 times which normally I would go in 1 time a year. I know that it was due to the stress of this type of job. I luckily had an amazing support system at work. My boss kept giving me her sick leave that she had accumulated over the years so that I wouldn't go without pay. i also would do some work while in the hospital. I truly appreciated all that they did for me. I know that most jobs are not like this. I then became pregnant, went in the hospital again and knew that it was time to quit. I was devastated. I loved my job very much and the people that I worked with, but I had to make a choice and new that this job certainly wouldn't help my pregnancy any. A few months after quiting I decided to apply for SSDI. It took about 4-5 months before I got any response but I was told that I had received it. It was truly an awesome blessing and has truly helped us financially. No it is not nearly enough to live on your own and recieve this but it helps us pay the bills. Since we have a daughter she recieves money too. This allows us to put money away for her college fund. I know that everyone does not have stories like this there is good and bad to everything. WE have also been very blessed with good insurance as well. That is my experience with work. I do miss work but I feel so blessed to be able to stay home and take care of my beautiful daughter. Good Luck with everything!

Emilee with 2 Es

 

[anonymous]

Some more positive stories, that's great! Amazing, your boss giving you her sick leave, what great support...

Thanks for sharing
curious

 

[anonymous]

You don't live in Tennessee do you? If you do I would like to have a moment with the Gov. on the Medicade Kick-off. It would just take a min.

 

[anonymous]

Thanks for sharing your story. I've also experienced having co-workers that are caddy. I understand how it is hard to open up to those kind of people, as I have found out the hard way that some of them will feed off the info and talk more. It's really an issue of immaturity on their part. I've learned to seek out the people who are open minded, understanding, and supportive in a work environment. But from the sounds of your situation, most of your co-workers are this way. That would be tough to deal with. Hopefully you can find another job of more interest to you and a cleaner environment. Maybe you'll find at least some people who you can feel more comfortable being honest with.

curious

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>You don't live in Tennessee do you? If you do I would like to have a moment with the Gov. on the Medicade Kick-off. It would just take a min.<hr></blockquote>

I'm not sure what your getting at? But, no I don't live in Tennessee.

curious

 

[anonymous]

I know just how you feel. I am 28 w/CF and I was having a hard time with the whole job thing. I try part-time but didnt make enough money and then when I was 22 I got married and my husband who has been a angel didnt want me to work. I did go to college and got a degree but I still could do full time so I quit working 3 years ago. But in the last year I was getting depressed because I wasnt doing anything. So I started looking for a home base business that would allow me to take care of myself and still make great income. Well after looking for awhile I found one and now I have be doing it for about 4 months and I love it. I get to help other people but still help myself. Of course it was not a get rich scheme but know I am making around 500.00 dollars a month and only working 60 hrs a month and I know that after this month I will be making close to 1000.00 and still only working 60 hrs to 80 hrs a month and most of the time it is for my home. And by the end of the year I should be making around 2000.00 to 3000.00 a month. If you would like for me to tell you more email me at hjulius@frontiernet.net
I would love to hear from you and see if I could help you like someone help me.

 

[JazzysMom]

No offense should be taken about my view. I saw your other post & although your intention might be genuin with regards to helping those of us who are unable to hold down a job outside of home.....I worry & therefore dont buy it. For me its either a sales type job (insurance, tupperware, telemarketing etc) or its some type of "pyramid" style business that is able to get through the legal loopholes. Either way I personally dont have any interest, but should it be legitimate & someone can benefit from your help...thank you!

 

[happywithcf]

Are you working now or are you still on SSDI? if you are looking for a job that you can do on your on time and still make great money send me a emial. I am 28 w/cf and 4 month ago I found a wonderful job that I can mostly work form home but I work when I want to work and I dont have to answer to anyone or worry about it if I go into the hospital because I still get paid when I go into the hospital. So if you are interested I would be happy to talk to you.

 

[happywithcf]

If you are every looking at find a job agian, I would love to tell you what I found because I was the same why I tried to work and I could not work and keep myself health. 4 month I try a home base business and at first I thought that it was going to be another scheme but I was wrong. I work when I can and I make good money and it just keeps getting better and in a year if things keep going this way I will have the company that I work for pay for my car payment and my plan is to be out of det with my credit cards. My husband is also loving it because he is see the money come in and I am able to take care of myself. If you would like to know more please email me at hjulius@frontiernet.net and I would love to hear from you because I want to share what I found to other people with CF. I was going into the hospital every 3 months before this and now I have been out of the hospital for 8 months. Sorry my name is Jessica and I am 28 years old and I have live with CF my whole life.
<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Hi, I dont have CF but my twin daughters do, but I wanted to let you know about a place that I have been working at. I have worked there for about 7 months now, you have to have internet and be able to talk on the phone alot. If you can hopefully I can help some of you out. It is answering phones. Most of the time they start you out answering calls from like infomercials (SP?) but after that you can answer for pizza hut, home depot, HSN ect... it is at your own pace you can pick your own hours you can delete your hours up to 24 hrs in advance. I t is really nice but I cant do it anymore with twins that have CF, they keep me busy!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> They hook the phone system right up to your computer so calls come through your phone and you work on your computer. You also do not pay anything!!!

It is workathomeagent.net

You go through your question page and they do a background check then they will call you. Interviews ect are all done by phone!!!

Jenny- twins w/CF