Work

[Traveler_7063]

How many of you all work full-time? I am single, live alone have CF and CFRD, and it's becoming too much. My ego is what is holding me back from staying at home. My PFT is still fairly high but I average 4 hospital stays a year and miss a day or more monthly for Dr. appointments. The stress of being away from work is hard - I hold myself to very high standards, my work week is always disrupted to accommodate CF. Not to mention at the end of the week, I am wiped out from 5:30 wake up times, treatments, work, gym, house chores etc. I am down to 30 hours of sick time to get me through the rest of the year. I typically have to do a treatment mid-day on my lunch break, etc. I am not sure how to approach this. Each year it is becoming increasingly hard. It's a self respect issue that keeps from not working, I don't judge others, but I would have a hard time not being able to say I am doing something....and no, I don't want to volunteer somewhere. I think I would have the option of dropping to part-time where I am at and am considering talking to my employer...sadly I am single and won't have a spouse to fall back on so I have to be smart about this.

 

[ethan508]

I work full time and I'm up at 5:30 doing treatments right now. As it is some weeks at work get pretty exhausting. I haven't had to do the hospital thing and am not quite sure how I'd make that work.

Is the nature of your work such that you have flexibility in your work schedule? Can you remote in from a home computer and get work done on weekends or during hospital visits? Does your employer allow any flex time or comp time? Do you have separate sick leave and vacation time or is it just one bucket? Can/do you use FMLA during hospital stays? Would your employer allow you to buy extra time off (I can buy 40 hour a year)? Is there any way to shorten Dr visits? Or do home IVs to allow for some work time during clean-outs? I just did my PFTs in a local hospital after work, and that saved me from taking a full day off for a clinic visit.

We've got some gents (getting close to retirement) that dropped to 32 hour weeks. They get full benefits but only 80% pay. We have others that work weekends to make up for a Dr appointments. Or some that will work 10 hour days on weeks they have to miss a day.

It feels like a big jump from full time to part time but if that is what you need to do to keep up with health do it. Hopefully there are others on this board that can help you with that transition.

 

[Traveler_7063]

I have two banks of leave...vacation and sick. I accrue 4 of vacation a pay period, 8 a month...and am sitting on about 80 hours. I get 60 hours of sick at the beginning of each year that is use or lose...and do not earn any more until the end of the year. There are times that I can earn comp.....luckily I had some in the fall. I do have FMLA and Short-term disability, but have to exhaust a week of sick before short term will pay and it only pays at 60%, which I can't really afford to do. I work for the State so can't buy time off and working from home is not really an option for me.

THe hard part is doing the iVS for 3 weeks and working...my current wake up time without IVS is 5:30 , now I am adding a IV treatment at lunch, still managing blood sugars, nebs, etc...it's not so much the being sick and unable to do it, it's just exhausting managing it all...refilling meds, working, house chores, paying bills, etc.....I am almost 30 and for some reason this year it just caught up with me.

 

[Dank]

I've posted about this a few times. I am in pretty decent health right now but tryng to look ahead I'm not sure how long I can keep up the fulltime working like I have been. I think it's important to try to find a work-at-home career. I'm not sure what you do and if that's possible. I know for the assistance from the government to kick in, you'll need to be a lot sicker, so just keep that in mind. I'm sure some others can comment on that process. I hear you about the ego though, I have some issues accepting that I need to do more for my health and put work second, when it pays the bills. I wish things were easier for people with CF. Good luck!

 

[static]

I started my career a few years ago part time due to budgeting, however since then I've had numerous opportunities to go full time but had to turn them all down.

First let me state that I really value what my company does so this makes sense

For me, two things went into my decision. 1.) Will I be able to keep up on health and 2.) Can they find someone that can do this better, without my limitations.

When answered truthfully, it was always no then yes. My advice would be to take the part time position but ask to be involved in the training of the new person taking over your old position, that way you can meet a cool new person and make sure everything is still being met to your standards.

When a fulfilling work at home position opens up I'd love to do that, But until then I am fine where I'm at.

 

[jaimers]

My company where I used to work did not so part time positions in any department but I worked it out to do part time work while under short term disability. My normal shift was 8:30 to 5 and so I would come in at noon and work until 5 and STD covered the 3.5 hours of my shift I wasn't there. This way I was only getting the pay cut for a few hours of the day. Now granted I am married so I had my husbands part time job salary (he was a full time grad student during this time period) to help off set the pay cut but it wasn't as drastic a cut as going part time with no help from disability.

Now my job was such that I could get all of my work done in that time I was in the office so that may be different for you. I found talking very honestly with my manager and HR rep was very helpful and I was a really good employee and actually did the work I was supposed to do and did it well so that I'm sure made the choice for them to work with me and be flexible given my health circumstances easier. Obviously legally they have to make reasonable accommodations for me so I'm sure that influenced their helpfulness to a degree. The downside is that short term disability ends after 6 months and my long term disability application and appeal were denied due to cf being a pre-existing condition.

When I started the STD I hadn't been at my company a year so I wasn't eligible for FMLA. By the time my 6 months of STD was up I was eligible for FMLA used that to cover the 3.5 hours of my shift. Of course FMLA doesn't come with any salary but it did come with job protection. By the time my FMLA time was used up for the year I quit my job to move away for my hubby's new job so it ended up working out ok for me. My point in all this is that you could see if some sort of partial STD scenario like mine is something you could do at least temporarily to see if part time is really helpful for you health wise and use the time to find a job that would allow you to still make enough to live on but work part time.
Perhaps living with one or more roommates would be helpful in cutting down on living expenses.

 

[ethan508]

The idea that Long Term Disability has a pre-existing conditions clause seems rotten. I hadn't ever supposed that would be the case. It is like insurance companies exist to collect money without ever wanting to pay out.

Do you know if part of that was because of your short work history? Some health insurances used to have a 1 year waiting period before covering pre-existing conditions. Is LTD like that? Or is it just once you are diagnosed you will no longer ever qualify? I had figured on using LTD if needed to help bridge the gap between good health and normal old age retirement.

 

[jaimers]

Ethan my particular insurance company would look at the 3 months prior to you going out on STD when determining your LTD eligibility. If you had been treated for the same condition during those 3 months that the. Caused you to go out on STD they considered it a pre-existing condition. So if you got your timing right you could probably schedule appointments to avoid the 3 month scrutiny. I, unfortunately, did not know about the 3 month period and had an appointment about 1 week into that time so there wasn't a way for me to get around it. I know there have been others on this forum that were on LTD so it may be that this was just the particular rule for my company.

 

[believingjesus]

That is very helpful information Jaimers regarding the 3 month scrutiny. I haven't had to deal with any of this so I don't know about it but is that LTD and STD included in your insurance when you sign on with an employer or how do you get this type of insurance? Is this something that helps people when their health declines until they are covered by social security? I hope we never have to deal with it but need to know in case.

 

[Aboveallislove]

An individual can always purchase short or long term disability but when purchased on the market, they will require an application which would require disclosure of CF and they wouldn't issue or would only at a very $$$$ price. Many employers offer as part of a benefits package and if purchased upon the START of employment, they can't deny based on CF, but they can exclude coverage for a pre-existing condition going back a few months (so you don't start working and 2 months later take off). IF it isn't purchased at the start of employment, then usually they can reject your application for disability. Both Short and Long term policies define disability and it isn't an "easy" standard, but it is a good benefit for some people.

 

[believingjesus]

Thank you Aboveall for that information. Hope we never have to even think of it but thank you!

 

[jaimers]

I had purchased my STD and LTD policy through my employer at the start of my employment. My guess is that if it requires a disclosure of CF it would be extremely difficult to purchase either type of policy through the market place because the odds are so high that you'll use it. I did not have to disclose CF when I purchased it as part of my benefits package through my employer.
Kind of like the difficult time we have trying to get life insurance. Since I'm not currently working I had applied for a life insurance policy actually through our mortgage company and it was of course denied because I had to disclose CF.

 

[ethan508]

It all depends on the clauses in the policy. I was looking closer at my employer LTD, and it looks like it has a few exceptions but pre-existing isn't one of those. However I did read that some policies (even through an employer) have clauses that might require a person working for a year or two without a claim before becoming eligible for benefits. Also many of the preexisting clauses aren't just 'not going to the doctor' but being 'under the treatment of a doctor' or 'taking medicines or therapies' for a pre-existing condition, i.e. it would be very difficult for a CF person to get around a pre-existing clause if it existed.

 

[believingjesus]

Okay thank you Ethan. I wasn't thinking about the 3 month appointment being part of a pre-existing condition clause. I see what you say about the medicines and therapies being part of a pre-existing condition. I will ask if it says that there is a pre-existing condition clause. Thank you.

 

[Smirizzle]

I am with you. I was diagnosed last year, missed 3 months of work. Prior to, working 40+ hours a week as outpatient manual physical therapist, former professional modern dancer, all around general fitness enthusiast. Been sick more than friends but I never let it stop me. Now, barely making it through 20 hour work week. Since Jan I can say I have been sick more than well. I have my first ever experience with IVIG and IV antibiotics tomorrow and this pay period I have already missed 5 days, 50%! I am afraid it is my actual direct contact with people that isn't helping. Very discouraged and just not quite sure how I am in a completely different place from 1 year ago.

We will figure it out. I don't give-in to anything either. And I absolutely hate missing work, heck, I hate it when I'm late to work. And by late I mean less than 30 minutes early!