[BackwardPawn]

I woke up this morning completely stiff and unable to move. I texted my boss told him I'd be late. Finally I gave up as I couldn't get my computer and my training manual into my car, let alone into the building.

I called my boss told him that I had about 4 -6 hours of programming to do to make a form usable and I could easily do it from here and I started working on it. He emailed back about an hour later and told me to send him a form requesting sick leave (which I'm completely out of).

Now, he doesn't get his form, I'm in a deeper sick leave hole and I'm stuck here playing video games. Except that I'll never dig myself out of the sick leave hole I"m in, I'd rather sit at home and play video games...but if I'm willing to write his formulas for the next six hours and I have medical documentation that I have a chronic illness, why shouldn't I be allowed to work!?!

[alice md]

Some work places are ready to accept work from home and others are not.

This is true not only for people with a chronic illness, but also for mothers with young children and even people who work and concentrate much better at home than in a busy office.

Some work places are very strict on the kind of work that counts as "work" whereas others are ready to be much more flexible.

Some work places are more flexible with whoever they like (or with whoever is more demanding. )

[BackwardPawn]

Originally Posted by alice md

Some work places are ready to accept work from home and others are not.

This is true not only for people with a chronic illness, but also for mothers with young children and even people who work and concentrate much better at home than in a busy office.

Some work places are very strict on the kind of work that counts as "work" whereas others are ready to be much more flexible.

Some work places are more flexible with whoever they like (or with whoever is more demanding. )

I realize this, but two months ago he told me I can work from home 5 days a week if I get a doctors note and I told him that I wanted to come into the office some as I felt it was important to be part of the division. Now he wants a schedule in advance of what days I'll be sick and have to work from home, otherwise I have to take leave. I'm just perplexed. And EEO is always unreachable either by email or in person. He doesn't respond and is never in his office.

[alice md]

I think his requests are reasonable.
A very good advice I got from my occupational physician was to try and be as predictable as possible for my employers and not give them any surprises.

We planned my work schedule in such a way that I will nearly always be capable to handle it and then on better days I could do extras (or not).

Despite my requests I never got approval to work from home (and be paid for it), even though a significant part of my work is from home. ( I can almost always sit on my couch and type on the computer, even if I require respiratory support, but can only come and see patients a relatively small part of the time).

I ended up being formally 85% disability, and practically working half time. Not an ideal solution (to say the least) but it allows me to receive my pension and at the same time keep on working in my profession. It also gives me the flexibility required without jeopardizing my reliability.

[BackwardPawn]

Originally Posted by alice md

I think his requests are reasonable.
A very good advice I got from my occupational physician was to try and be as predictable as possible for my employers and not give them any surprises.

We planned my work schedule in such a way that I will nearly always be capable to handle it and then on better days I could do extras (or not).

I wish I could do that. We worked out a schedule where I would do two days a week from home and three in the office, with the understanding that there would be days that I would be unable to walk and the schedule might have to be flexible (this was after the offer of a 5 day telework schedule).

Shortly after this, I had a bad Tuesday and asked if I could switch one of my telework days. His answer was not to make a habit of it. I honestly have no way to predict which days I'll wake up and feel normal and which days I'll be stiff as a board. If I'm stiff and have to take extra medicine just to move, its difficult to physically get to the office and I'm not willing to put other people on the road at risk to drive there.

I'm really tired of the mixed signals I get from the them. They took six months to give me a parking space, then bent over backward to help me out by finding me a job that was more suited to my disability. Then they changed their mind and left me in the position I was in (which technically requires carrying boxes and has created somewhat of an issue).

After that they denied my FMLA paper saying I had to be completely out of leave before I'm eligible (which I've told isn't true), but I can't be completely out of leave because they're forcing me to take advanced sick and not letting me touch my annual for sick days (which also disqualified me from borrowing sick leave as I had to be out of annual).

They did give me most of the benefits of the FMLA despite not being on file and offered the 5 day telework (which I should have taken), but are now starting to give me a hard time when my disease becomes unpredictable.

I'm sorry this turned into a rant, and maybe I'm reading too much into this, but I get the feeling they are bending the rules to make it hard on me, but then throwing me a bone so I don't consult a lawyer and find out what rights I have.

For example, denying the FMLA and sick leave borrowing program based on criteria that they won't allow me to fulfill, then offering me the five day telework, which was a nice gesture but they knew I wouldn't want.

I'm just not sure what to do. For example, I used a month of advanced sick on my surgery. I know people with months of sick who would donate, but I'm not eligible because I have almost a month of annual accrued that they've decided I can't use on sick days. The way they're working it, I literally have to take a month long vacation in order to accept donated sick leave.

Something just seems wrong with the whole situation--maybe after I finish this week's round of IVIG, I'll take my month long vacation. I think I need it. <sigh>.

EDIT: My timeline is a little screwed up. I should go back through my emails and figure out what happened when and also probably ask HR/a lawyer/someone who knows something about this game their playing with the leave, as it makes no sense to be in the whole on sick leave and have accrued annual making me ineligible for sick leave programs.

[Stellatum]

I'm a bit frustrated with the American disability system. I have been raising (and homeschooling) children for the past 23 years. In two more years, they will all be in school, and I had always planned at this point to start a full-time career to help put them through college. Unless something really dramatic happens--and my neuro used the word "refractory" last time I saw him--that's now out of the question. But since I don't have much of a work history, I'm not eligible for much disability. Disability payments are based on what you've earned in the past, not on what you could earn if you were healthy.

I work part-time from home as a free-lance...well, anything. I do editing, proofreading, some writing, a bit of bookkeeping, secretarial work--whatever I can find. As my kids need me less, I'll be looking for more of this sort of work, but it's not what I had in mind.

Alice said to me a while ago that I don't have to give up my dreams; I just have to find a different way to live them out. I think that may be right. My dream was to teach, and I will teach. I'm teaching now. Besides my own kids, I have a weekly high-school English class of 12 home-schooled students (this is my volunteer work). I will look for (or create) opportunities like this one, and I'll do what I can. I constantly try to remember to be grateful that I can earn money at all, and especially that the money I earn is only needed for college tuition, and not for my own support. I know that the matter is much more pressing for many people here. Still, I'm disappointed. I had hoped to do something both meaningful and lucrative. I know, I know--very few people are that fortunate even if they're healthy! But still.

Abby

[BackwardPawn]

Originally Posted by Stellatum

I'm a bit frustrated with the American disability system. I have been raising (and homeschooling) children for the past 23 years. In two more years, they will all be in school, and I had always planned at this point to start a full-time career to help put them through college. Unless something really dramatic happens--and my neuro used the word "refractory" last time I saw him--that's now out of the question. But since I don't have much of a work history, I'm not eligible for much disability. Disability payments are based on what you've earned in the past, not on what you could earn if you were healthy.

I work part-time from home as a free-lance...well, anything. I do editing, proofreading, some writing, a bit of bookkeeping, secretarial work--whatever I can find. As my kids need me less, I'll be looking for more of this sort of work, but it's not what I had in mind.

Alice said to me a while ago that I don't have to give up my dreams; I just have to find a different way to live them out. I think that may be right. My dream was to teach, and I will teach. I'm teaching now. Besides my own kids, I have a weekly high-school English class of 12 home-schooled students (this is my volunteer work). I will look for (or create) opportunities like this one, and I'll do what I can. I constantly try to remember to be grateful that I can earn money at all, and especially that the money I earn is only needed for college tuition, and not for my own support. I know that the matter is much more pressing for many people here. Still, I'm disappointed. I had hoped to do something both meaningful and lucrative. I know, I know--very few people are that fortunate even if they're healthy! But still.

Abby

I can sympathize with you. I went the traditional route of high school, college, then work. Only looking back, college was years I didn't pay into the system, in order to get a degree that I can't use (not because I'm unable to think, but because I can't physically get to the office). As a result I don't have the quarters I need for disability.

And Just because I can't walk shouldn't mean I'm not allowed to work...other divisions in my office have their people working two office days a week and the rest from home. For some reason my division never received permission, but I've provided every piece of documentation about my disease that I've been asked for and then some. I've even been told that I've given them too much and they don't have the right to it, but I wanted them to understand how unpredictable it, but that I can still work from home, if needed. Apparently, they didn't get it. I try to roll with the punches, but its getting harder.

[alice md]

I agree, it is very hard to find the right way to balance living with this illness and leading a reasonably productive life.

You also depend (more than healthy people) on the good will of those that work with you.

At the same time it gives you the opportunity to do things differently. To find the way to make them good willed. To find in yourself talents and abilities you didn't know could exist which compensate for those you have lost.

There is an inevitable phase of mourning about the loss of the kind of life you had before. But, then there is the phase of picking up the pieces and building something new from it.

It is like learning to walk all over again. It takes time, energy, motivation and a lot of frustration, but it is also quite rewarding. You have to learn to view your life from a new angle. And only you can do it because it is your life.

[BackwardPawn]

Originally Posted by alice md

I agree, it is very hard to find the right way to balance living with this illness and leading a reasonably productive life.

You also depend (more than healthy people) on the good will of those that work with you.

At the same time it gives you the opportunity to do things differently. To find the way to make them good willed. To find in yourself talents and abilities you didn't know could exist which compensate for those you have lost.

There is an inevitable phase of mourning about the loss of the kind of life you had before. But, then there is the phase of picking up the pieces and building something new from it.

It is like learning to walk all over again. It takes time, energy, motivation and a lot of frustration, but it is also quite rewarding. You have to learn to view your life from a new angle. And only you can do it because it is your life.

Thanks. Thats really good advice. I'm sorry if I sounded defensive earlier. My situation is a little bit different than yours, as it seems your workplace is trying to help you adjust (except for your telework situation). In my workplace, I've found I've been given bad advice which has made things more difficult (such as not being able to access the sick leave pool).

As a result I've found that even when people are trying to help I sometimes get defensive.

[alice md]

as it seems your workplace is trying to help you adjust

Yes and no. It depends on who and how.

It was mostly my determination and finding those who were ready to help while ignoring those who were less so.

It was also my decision to find the way to be as productive as possible and part of the team, even if I do not get the credit I did before.

It was a lot of compromising and concentrating on what really matters.

It was crying at home and coming to work with a smile on my face.

No doubt that the trust my patients and some of my colleagues had for me was very helpful and supportive.

But, I can't say that my work-place (hospital administration etc.) made any significant efforts in my adjustment.

I am the kind of person that always tries to make the most out of the worst.
I don't mean "positive thinking"=everything is nice and good no matter how much it really sucks. I mean positive doing=always finding the way to do what you want and should. See each obstacle as something to overcome.

My grandma used to say that if the door is shut-look for the window, and if that doesn't work there is always the chimney. This has always been my approach to life, regardless of my illness.

I sometimes laugh that I am in charge of a phase I clinical trial, while not being able to prepare my own food or even bring it to the table. (But, admittedly I also sometimes cry about it).

I could have stayed home and felt sorry for myself, or as I would always tell my patients-if you have a life to live, do so in the best possible way that you can.

I am not saying that my way is the only way or even the best way. But, it is the best way for me. Or at least so it seems...

As a result I've found that even when people are trying to help I sometimes get defensive.

That's OK. It happens to me too. I think it is normal. You are sometimes not sure who is there to truly help and who is not.

I know I have been quite unfair to my neurologist initially. I was very suspicious every time he told me he is busy. I would say to myself-sure, he too becomes "busy" the moment I don't respond as planned to his "magical" treatment.

It took me time to realize (and he was also sensitive and understanding enough about it) that he is really busy and not just saying it to get rid of me and my frustrating illness.
It took me time to understand that he is not planning for me to respond to anything and is truly interested in making my life better in any possible way that he can regardless of how well I respond to the treatment he chose to give me.

I think we are just people and living with this illness which is so hard to understand for those around us is inevitably frustrating. It occasionally makes us less "nice" and I think we should be aware of it and accept that it is part of this illness and make those around us understand it as well.

Like I said, it is not at all easy to lead a good and productive life with this illness, but I do think that the efforts of achieving it, are eventually rewarding.