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01/14/2012 11:21 PM

Intro and Question

AustinLisa
AustinLisaPosts: 110
Member

Hi! My buddy on the Lupus forum told me about this group...I had no idea it existed, and she suggested I post my question here. Before I do that...a little about me. I have Lupus and am in my 30's (I was diagnosed at 16). I have severe complications from it including organ involvement. I work full-time, and I've been with my current employer for 4 1/2 years. I work in the field of education, and I created and developed the program I work in. It has become very successful, and I now supervise 14 other professionals. Work and success at work has always been very important to me and it's been my life. However, I've gone downhill with my Lupus the last 2 years, and I'm not doing very well with finding a way to "push through" with work. I'm finding that it's taking me 2-3 days to recover from every 2 days of work. It's extremely upsetting and frustrating for me. I've alwsys been very honest and open about my health with work...it's hard to hide when I'm sometimes carting around oxygen, heart monitors, etc. They've always been supportive, but I have a new boss right now that seems to be more focused on black and white policies instead of the bigger picture. Her response about a couple of things has been "how do you think it makes others feel if we let you do that". So, I've been reading about the Americans with Disabilities Act, and I definitely think I qualify.

I'm planning on setting up a meeting with my boss and her boss (who was my boss previously) to discuss the accommodation of me working from home 1-2 days a week and possibly a little flex scheduling. I've read a lot about accommodations, etc., but I would love to hear from somebody who has actually been through this. I'm trying so desperately to keep working, however, I also have GOT to start getting better. I have chronic kidney disease and recurrent heart issues right now due to the Lupus, and I just have to start to turn things around. It takes 3 hours a day to go to work (to get ready and drive there and back). If I worked from home twice a week...that's 6 extra hours of sleep/rest. That's like adding another night of sleep.

I love that this group is here....I'm finding that there aren't a ton of people with serious chronic illness that are working. I have to admit that there are moments I think I can't do this anymore. I'm single, but I've always paid for disability insurance, so if I were to stop working, I would make about the same salary. I don't want to do that...I've always lived for work and I used to think it helped me with my Lupus. However, I don't know anymore. With my chronic kidney disease, they don't know how long it will be before I progress to dialysis/transplantation. I just want to do everything in my power to prolong things and work seems to be hurting, not helping.

Thanks for listening, and any experience with accommodations and the ADA is very appreciated.

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01/15/2012 11:46 AM
tortoisegirl
tortoisegirlPosts: 3243
Senior Member

Hi there! I'm so sorry to read about your situation. You are however in a good boat with having disability insurance. Its very surprising its 100% salary coverage as 60% is more typical. I think you are on the right track to ask about working from home some days and the flex time, but even with ADA, not all jobs are going to be able to accommodate that. For example, they could say since you supervise folks they need to be able to reach you in person, not just by phone. If your company already allows some working from home in certain scenarios not under ADA, that will be in your favor as well.

The flex time for doctors appointments and such should be much easier. My company has always allowed that for everyone. They just ask you start/end your day between a certain time, such as between 6am and 6pm, and that they know what you're planning to do. I go into work at 7am every day so when I do need to leave early for an appointment, its usually just an hour early. Another option is to go down to part time with your same job and have the disability insurance pay you for the other days, assuming your policy covers that (many do). That is a good stepping stone as well if it came to the point you couldn't work at all, as it shows more effort than going from full time to nothing. You likely would be able to substantiate that if you have your doctor back you up on your length of recovery time after working. Also, what about moving closer to work? That would cut down on some of that time.

Sorry I'm not able to give you any first hand experience as I'm still working full time (just have read a lot about this stuff). I'm currently trying to get a new job that would cut down on my commute and give me disability coverage for all my conditions after one year. Currently I only have a policy that covers the stuff I got diagnosed with after I started my job (which isn't my most debilitating condition). I am considering going to part time if I get any worse, as like you, I can't fathom not working. I'm only 25. I got sick at 19 and never considered I'd need disability and life insurance so early (my life insurance rates are triple). I also find driving really wears me out, and I'm so slow to get up in the morning with the pain and fatigue. Best wishes.


01/15/2012 02:39 PM
ushie
 
Posts: 1928
Senior Member

Can you meet the Big boss with a mediator? In any event, what a healthy person might "feel" if you get accommodations is a ridiculous question. You are disabled; how about if you reply, "How do you think I feel, being handicapped but expected to behave as a healthy person?" Your Big Boss is an idiot.

01/15/2012 07:51 PM
AustinLisa
AustinLisaPosts: 110
Member

Thank you both for your responses! Ushie...you made me laugh so hard...and I needed to so much! Katie, my disability insurance doesn't cover 100%, but taxes are not taken out, so it ends up being about the same as my take home. Sorry, I was a bit confusing! The thing about me working from home more is that my employees are out in the field about 90% of the time. I already supervise them predominantly from phone/email, and I would definitely schedule my days at work to align with them being there. The tasks I would be able to do at home are the ones that I'm doing alone in my office. However, they can still definitely say no. My disability insurance doesn't allow for anything other than full-time disability (which I think is ridiculous). However, I think working at home 2 days a week would really help with rest and stress. I don't live very far from work, but it takes me a long time to get dressed and ready and then fight traffic. Maybe I'm naive, but 6 hours of extra rest/sleep seems like it just has to help some, right?

Thanks!


01/16/2012 05:39 AM
tortoisegirl
tortoisegirlPosts: 3243
Senior Member

I bet it would help. I hope your meeting goes well. If you don't get what you need right away, keep fighting! Best wishes.

01/17/2012 12:51 PM
ushie
 
Posts: 1928
Senior Member

You could present this with a proposal showing how more PRODUCTIVE you will be with a part-telework schedule. Emphasize how much MORE effective you will be in supervising your people on those days. Draw up charts--bosses love charts. Also, go to OPM.GOV and look up their telework guidelines and links. I telework 2 days/week and it really helps both me and my employers, because I do paperwork (Excel and other stuff) those 2 days and am available for email/phone/text confs with colleagues.

02/06/2012 07:00 AM
SSLMD
Posts: 1023
Member

1. Have you had the meeting and if so, how did it go?

2. A little time to lay down and rest in mid-morning and mid-afternoon might make a world of difference. That would be one of the advantages of working from home, but if there is a place at work you could rest, that could work, too. You might even offer to extend your day to make up for the lost time.


02/06/2012 06:33 PM
hawakeita
hawakeita  
Posts: 1913
Senior Member
I'm an Advocate

Hello. Since I've been home sick so much this month, I've had the experience of working virtually from my home computer, and joining in conference calls from my PJs in my living room. It has been a joy. With all this technology now, I can actually work from my desktop at work on my desktop at home. So cool. I feel a bit of hope that if my illness takes me down the road of not being able to get to work on a daily basis, that my employer would be open to this work from home modality. Let us know what happened at your meeting. Smile

04/10/2012 08:54 PM
AustinLisa
AustinLisaPosts: 110
Member

Hi MK! I'm so sorry it's taken me so long to respond...it's been a rough couple of months. So, to make a long story short...er...First, the meeting was horrible. I can't even put it into words. Since then, my rheumatologist has written a letter to my work stating that he wants me to work from home a minimum of 2 days per week. My work is allowing this now, but they stated they didn't know if they'll continue with it after this month. I'm not sure how they can do that..it's not a choice...it's an accommodation. In the meantime, asking for this has not been positive. It feels like they're angry with me for being sick...it's been the strangest thing. I never would have believed this could happen. I've definitely learned the lesson that you can love your work....you can put it first above all else, but it doesn't love you back, and at the end of the day...you can and will be replaced. It's been a heartbreaking lesson for me.

04/12/2012 12:38 AM
hawakeita
hawakeita  
Posts: 1913
Senior Member
I'm an Advocate

Wow, that's so terrible. Is there a way to fight them (if you even want to)? because it's an accomodation thing? Somewhere on this site I posted a whole booklet dedicated to accomodations due to Lupus. Let me see if I can find it. Yes, humility hits hard when we realize we are replaceable. I totally get that, and am grateful for each day that I am able to work. I really hope that you feel better soon, and that this work fiasco gets worked out even sooner.
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