CIDP and Work Issues

Thank you for sharing Cathy – I hope you didn’t get laid off because of your illness, and I hope I don’t either. I don’t feel particularly singled out because of my illness, they are targeting at least a half dozen people they feel are underproductive. I’m just not used to being considered one of those people, I’ve always been the one who got twice as much done as anybody else. I still feel that even with the numbness I’m as productive as some of the lame ducks they are not targeting but they are used to seeing much more from me. At least if I end up in a new job they will know exactly what they are getting and if they take me then they must feel I’m worth hiring despite my illness. I wonder how many people with CIDP are able to stay employed…

I don’t know if it’s a matter of knowing whether they need to provide accomodation versus passive neglect. I began asking for two things back in February – can I work at home and can we establish a leave sharing program because 4 people had approached me about giving me a week of their annual leave that they would lose at the end of the year anyway. The end of the year was June and the HR person finallly put the paperwork together at the end of July and it passed – to late for me. Plus she put some provision in there that if you are still on probation (which I am because they promoted me last year) then you are not eligible. Is that on purpose? Or did she simply forget I’m still on probation? I don’t know. They also still won’t let me work at home – citing that they don’t have a policy in place, plus the work I do is administrative, I can’t file from home. It’s quite frustrating but I know I could fight back more than I do – I would prefer my work to be a nonconfrontational environment.

Maybe I’m just too proud but I still think I get more done than some people who get paid more than me. My technical/computer skills make up for the repetetive motions I can’t do anymore – I learned how to make my database back itself up, I got PDAs for the field staff and put their work orders on them so they can just beam them to me at the end of the day instead of hand writing them and then having me retype them. Unfortunately though their level of expectation for me is based on my level of endurance, not my level of intelligence and while 90% of the employees tell me if I leave the place will fall apart, the other 10% make the decisions.

It’s weird but I’ve learned that working in a small Town government is more like my time in Peace Corps than my time working for the Federal Government. 🙂

Hi Eric,
Thanks for the suggestions. I actually have thought about calling up some old political contacts which is so unlike me I know I’m p.o.’d. I’m still waiting for that letter from my doctor stating he thinks I have CIDP and he is waiting to make sure it’s not MS, which he is “positive” it isn’t. Hopefully that will come this week and I can get the ball rolling again. I’m trying to give them the opportunity to do the right thing before I go making a stink in my own back yard. Of course there is the definition of “reasonable” also. I may be wrong but from what I recall of my Federal days “unreasonable” could be that you simply can’t afford to make accomodations for this particular person. For example, the only handicapped bathroom is on the other side of the building from me through three heavy doors, all of which close automatically, not electric, they just slam shut on your way through. From my days on crutches it’s a long way with lots of obstacles and when I was on prednisone there were days I barely made it even with people jumping up to open the doors for me. I was kind of joking at first when I asked if we could put a port-a-potty on the deck outside my office, but some days I have to do a wobble-sprint to get there in time so it’s not really funny. I did seriously ask about converting the doors to handicapped doors and got the brush off “we’re investigating lots of changes” but I haven’t pursued it in the last few months. If I end up using a wheelchair though there is no question I can’t get through the doors by myself.

This is a bit of a tangent but not really. I got into a discussion with a friend who left working for our Town and now works for the State. She was immediately put in charge of a lady who has MS and is in a wheelchair and found herself with a delima. This lady no longer has control of her bowels or bladder and when she has an accident at work it is up to her coworkers to clean her off and get her in a new Depends, even the men have had to take her to the bathroom and sponge her off. All of them are too embarrased to say ‘no’ and they are afraid she will sue them if they do. I’m waiting to see how my friend handles this situation but in light of that sort of accomodation it makes what I’m asking for seem like nothing!

Thanks for the laugh Eric, just the visual created when I thought of burying them in the dreaded paperwork was enough to make me giggle. I did receive some good news today, the leave transfer program has passed and six people came to me today to say they will give me a week of leave when I’m out of short term disability. Others have said they will give whatever it takes to keep me working there because they don’t want me to leave. I almost cried it made me feel so good. Whatever the top thinks, obviously the bottom up wants me there and still feels I’m productive. YEA!

Hey thanks Eric – I see you and I have a similar sense of humor! That memo should go out sometime in the next week so I’ll let you know how people respond. To be honest they are much more concerned about political issues right now to even care about me which may work in my favor. The last thing they need right now is another law suit… yesterday I asked for a new chair, one with a high back because my neck muscles are weak and I got “whatever you need” in writing so I’m going shopping online after lunch. I think I’ll go a step further and get a new mouse too – one with a track ball so I don’t have to move my arm so much. I’m so pathetic I felt guilty about asking for a new chair until I walked into the Finance department today and saw that ALL of them have new chairs – all with high backs and adjustable arms. I don’t feel guilty anymore but it’s clear I have to ask for what I need as they sure aren’t going to think of me when they order new stuff. Sigh. I hate being the squeaky wheel but obviously that works so I’ll have to change my attitude.

Thanks again Eric, it’s wonderful to know that there are people out there as frustrated as I am but still retaining their sense of humor.

I had a funny morning – they had an “all hands on deck” to do a big mailing about some drastic move the Town Council made last night. They asked me to help and for awhile I was OK, slower than others but still getting things done. Then when my nerves started giving out suddenly envelopes started flying in all directions spilling their contents all over the table. I thought it was funny, one person thought I was just pissed and doing it on purpose, the rest were shocked. That’s when I really started laughing, there is nothing like a personal demonstration to remind people that even if you look OK you aren’t. Hee Hee.