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Posted 12/9/2008 12:56 AM (GMT 0)
For those of you working with Lupus

1- Do you take many sick days off of work? How many?

2- how many hrs as week do you work?

3- How long is the travel time to and from work?

4- Is your employer understanding of your illness?

5- what is the one symptom that makes you the most ill to not be able to work?

I may have to go back to work so just looking to compare how others cope

Thanks

Jen

Posted 12/9/2008 1:15 AM (GMT 0)
Hey Jen,

 

After trying to live around someone else's schedule, I decided to become self employed. Be my own boss, set my own schedule.  It's the only way I can live a healthy life. But that's just me!  I'm a photographer.  It's been the best thing I ever did!

 

Good luck!

Ginny

Posted 12/9/2008 1:22 AM (GMT 0)
Hi Jen,

1. Fortunately I haven't had to take many sick days since I work 4 days a week, it really helps and I try to push through when I can.
2. I work 32 hours a week and have for about 1 1/2 yrs to cut down on cost, don't know when I will go back to 40 hrs a week and don't know if I want to or how my body will react to it.
3.my travel time is 15 min each way, thank goodness, I don't think I could handle a long commute.
4. I work for some wonderful people, they are very understanding
5. mainly fatigue, joint pain, etc

If you do have to go back to work I pray you find a great job with wonderful understanding people, that always makes things better. When I first started my last job it was ok, I had just started Plaq and was feeling pretty good, the job became very stressful and my health declined quickly. When I started my current job it wasn't long until I had my dx and started a better treatment plan. My health has been up and down, I just deal with it day to day as best as I can. Take care and keep us posted on how you are doing.
Posted 12/9/2008 1:26 AM (GMT 0)
Jenny
I am a PhD candidate so I work 40+++ hours per week. The way I cope is by telling my professors etc that I am sick and occassionally taking a day off when I know I am getting sick as sort of a "pre emptive strike". Do your best to find flexible employment.

sharky
Posted 12/9/2008 3:24 AM (GMT 0)
Before I answer I must point out that my husband owns a small business and I work for him:

1- Do you take many sick days off of work? How many?
I set my own schedule so I work around how I am feeling. So, no, I rarely take an unplanned day off. Maybe 4 or so a year.

2- how many hrs as week do you work?.
Averages about 30. I usually work 4 days a week.

3- How long is the travel time to and from work?
about 5 minutes each way.

4- Is your employer understanding of your illness?
He'd better be! LOL. Seriously, all of the employees are very good - even before I got an official diagnosis.

5- what is the one symptom that makes you the most ill to not be able to work?
Pain. I am allergic to most pain meds - so I am usually in some degree of pain. When the pain is really bad the fatigue starts to really get to me, too (not a good idea to work on the books when the brainfog is bad!)

I've worked for my husband for 11 years. For the 15 years before that, I ran an at home daycare. There was no way I could handle the daycare situation any longer. Those were 60 plus hour weeks with a lot of physical labor.

Good Luck. I hope that you find a situation that works for you!!
Posted 12/9/2008 12:08 PM (GMT 0)
Hey everyone. thanks all so much for your input.

I've been at the same job for close to 9 yrs now and am on work disability. I was off last Nov for 3 months, then went back to work at my request, but I was so stressed from he job, boss and commute, I was getting more and more sick. I also could not, for the 4 months I went back, could not make the full 42 hr week.
I've been sick for 15 yrs and always was able to work, In the last 8 yrs at my job, I would take one sick day a yr. I owned my biz as well with my ex and it was great to work from home, but that's not an option now since I live alone and need income.
I am taking courses towards getting a naturopathic cert, so I am hoping in 2 yrs time I will work again at my own business.

For now, my insurance just informed me that my short term disabilty benefits have come to an end (nice, 2 weeks before the holidays) and I'm going to now have to apply for Long term disability. If I am not approved, I would have to go back to a 42 hr week. Starting at 6:30 am until 3:30 pm.
My commute is 45 mins each way, in major city traffic.
I do want to work b/c I am not happy being home most days and did offer to work 3 days a week, but the insurance and my company does not approve.
Frankly, I'm a liability to them now and I think they hope I just fade away. They are a very large company so pretty much, I'm only a number.
They have never been kind or understanding to my illness.
My worst symptoms are vertigo, fatigue, anxiety and joint pains.

Some weeks I am in great shape but still very limited. I worry going back to work full time will take my 6 months of healing back to square one.

Anyone know a really rich guy who wants to marry a sinlge sexy redhead? ;-)...hehehe

Jen
Posted 12/9/2008 5:18 PM (GMT 0)

Hey Jen,

I do not know how any of you do it, when you work and you are sick.  I could not do it.  I do well to just get my house clean a room at a time.  and sometimes I pick my grandchildren up from school when I need to, and sometimes I take someone to the grocery store.  That is about all I can do.  and if I take someone to the grocery store, they know they can't shop around.  the lights affect me.

I loved it when I was working.  i really liked my job, and was good at it.  but there is no way I could work today.  I hope some avenue will open for you.  It has to be really hard to be on disability and having to lose it, when you are living alone.

Will send you many prayers

Hester

Posted 12/9/2008 5:30 PM (GMT 0)

I feel for you Jen.  I haven't worked in several years.  I miss the social interaction and the paycheck!  But I also don't miss the stress of having to go in when sick and tired - especially during the winter, when I'd get so worn down I'd catch anything floating around, on top of everything else.   I don't have to work - though it would be a big help if I could.  I think getting your certification is a really good move.  At some point you'll be able to set your own hours. 

At any rate, good luck with the long term disability and just coping with the work/school thing at present.  I'm an artist who loves to work in all kinds of mediums....thinking about using what energy I do have to continue to create and sell (hopefully) on Etsy.  Take good care of yourself!

Ps. I'm a redhead (or was - it's turning on me) too!

Lucy

Posted 12/9/2008 5:48 PM (GMT 0)
Peacesoul, Like you, I fought to keep working as long as I could. There finally came a time when I had to either find other work that didn't have deadlines (*all jobs have deadlines!!) or apply for long-term disability. I, too, was afraid I wouldn't get LTD -- and just as afraid that I *would* get it. I was finally convinced by friends to apply for the long term disability. They knew better than I that I needed a break, it seems. I'm very glad I did - I didn't know quite how badly I felt until I was able to really relax from the stress of everything I was trying to do. Additionally, I found that I qualified for Social Security Disability. Once I got a chance to quit running on the treadmill and was able to minimize stress, my symptoms started getting better. I bet the same will happen for you, and you'll be able to do the naturopathic thing starting from a better place than you are at now. This may be the universe telling you that LTD is the next right step for you to take. Hope things work out quickly,
Posted 12/9/2008 6:25 PM (GMT 0)
Hi Peacesoul

I am still officially employed, but am on short-term disability at this time. I tried so hard to continue to work that I probably made things worse by refusing to take FMLA and things of that nature when I started seeing signs my Lupus and job were not agreeing with one another. I guess my ego got the better of me and here I sit at home now with unable to do much of anything, lesson learned.

I began having major issues in Jan. 2007, at which time I was managing 20 employees, putting in 10+ hours a day and on call 24x7. My job was extremely stressful, as I did not know when the phone would ring and I would have to log in from home, literally night and day. Anyone would call me from my employees up to the vice president of my division, I work for a very large telecommunications company. After 4 years of this I told my husband in April 2007 I just could not do it anymore and requested a downgrade in my job to reduce the stress and hours, in June I accepted a lower paying job with normal hours and unfortunately less pay.

The problem was my body had had enough by then and I had to give in and take some time off. My rhuemy told me if I didn't let go of some of the stress I would never get well. In August I ended up in the hospital, it was the first time I filed FMLA, I felt so guilty about that it made things even worse. By the end of September I was a wreck and the meds I was on were doing no good at all, my rhuemy sat me down and said you have got to go on disability, if you don't back off all the meds in the world are not going to help you.

1- Do you take many sick days off of work? How many? As you could see I refused to take them and made things worse, I would literally almost crawl to work.
2- how many hrs as week do you work? For years I worked 60+ hrs, this job however allowed me to work from home anytime I needed to, if I was feeling bad, I just called my manager and told her I need to work from home, when I switched jobs I worked 40 hrs, but I could not work from home, it actually made things harder on me which I would not have thought, because I had to be there 8 hours a day.
3- How long is the travel time to and from work? 5 mins

4- Is your employer understanding of your illness? Yes, they have been very understand, thank God
5- what is the one symptom that makes you the most ill to not be able to work? Fatigue is the worse thing, somedays I just didn't know if I could get out of bed, joint pain I didn't know if I could walk across the parking lot and up to my desk, I would wear gloves at work to try and keep my hands warm and comfortable enough to type.

 

I wish you the best in whatever decision you have to make. I miss working, mostly because I miss the interaction with the people and at 41, I hate to think this disease has gotten the better of me. But there are days when I think, hey I could get used to being a lady of leasure, perhaps this isn't so bad afterall !

Melissa

Posted 12/9/2008 6:31 PM (GMT 0)
Hi Jen!
I'm sorry you are having a rough time right now. That is pretty crappy that it has happened right before the holidays. To answer your questions,
1- Do you take many sick days off of work? How many? I try not to take very many, but sometimes it is impossible. There are times that I've been able to go months without taking a sick day, and sometimes there are only a couple weeks between them.
2- how many hrs as week do you work? I was working two jobs, so about 70 hours a wk, then I ended up in the hospital. I am down to one full time job now, which is around 40 hrs a wk.
3- How long is the travel time to and from work? Luckily, I live and work in a small town, so it only takes me a few minutes to get to and from work.
4- Is your employer understanding of your illness? My boss is pretty understanding for the most part. He hired me knowing I had health problems. But sometimes my co-workers are not so understanding. They just don't understand what it's like to not feel good, more often than you do feel good. I think sometimes they think I am faking or something.
5- what is the one symptom that makes you the most ill to not be able to work? Nausea and extreme fatigue.
Good luck with your situation. I hope everything works out for you!
Posted 12/9/2008 8:49 PM (GMT 0)
everyone, THANK YOU from the bottom of my heart for all this input.
It's actually made me feel less alone with this mess.

I too had the whole ego thing going where I was sick and worked. One morning I fainted in traffic (was able to stop the car in time) and instead of turning around and going home, I went to work. That's the day I knew I had to call my Rheum and admit I needed time off.

Melissa, my rheum told me the same thing, that I needed to stop the stress. But it's like a double edge sword in that work is stress and being isolated at home is stress. but of course, not having to battle traffic, getting dressed up, making lunch every day and not having to get up at 5 am really lowered my stress.

Lynn, you said "I, too, was afraid I wouldn't get LTD -- and just as afraid that I *would* get it"
THAT hits home big time. This is exactly how I feel.

Lucy, loved what you said about using energy. I'm such a spiritual person, you would think I would figure this out much easier.

Hester, for some reason. I was ok to work sick. I can work with the worst joint pain and fatigue, it was the vertigo (dizziness), anxiety and flu like feelings that cropped up only about 2 yrs ago that kicked my butt.
When I first got sick 15 yrs ago, in my mind I was lazy, overweight and didn't eat well, so thought changing that would help and it did! REALLY, I felt well. I was not dx with any illness then. Though I did go see dr's they didn't know why I was sick.

It's almost like when I got the dx of lupus then lyme, I gave my bad days more power.
I also noticed more and more symptoms which I think were triggered by major stress.


DQueen, I always wanted to live in a small town. I am sick of this large city. And by the way, I'm craving ice cream because of your nick name..haha

Again all, thanks so much. really, I feel so much better

Also, the insurance dr called. They will see me next week (they first told me end of Jan). I wonder if this dr will really side with me or my insurance co.
The dr is also VERY far from me. Ugh!
Posted 12/9/2008 8:52 PM (GMT 0)
Geez, I just checked out the dr they are sending me to on RATEMD.COM and he got a terrible rating.

Oh joy! I better wear a very revealing top and wear a little make-up...haha! The "girls" are going back to work....haha
Posted 12/10/2008 7:47 AM (GMT 0)
I’ve been off work for since Sept.24th 2008 with my latest flare which came on after working from 2:30pm until 8:30am then back at 4:30pm until 11:00pm the back for 6:30am until 5:30pm from a Thursday to Saturday. I had been feeling worse and worse over the years taking longer and longer to recover from long shifts and injuries. I had just chocked it up to getting older (I’m just 40 now), but it has been a speedy down cline over the last five yrs. That was until I had a positive ANA test and finally diagnosed with MCTD. Now I understand. I would say the latest flare is defiantly due to the hours worked, lack of rest and how hard the work was.

Where you are from so I can figure out the proper laws, contracts or the like so you can possibly put together a duty to accommodate situation for yourself. I have some experience in this from my union involvement. It all depends on your situation and the human rights laws that apply. Are you in a union or non-union job this will determine where you start? Most can be worked out without any problems. You just want to make sure you’re covered.

I have worked in the marine maintenance industry (ferries) for 20+ yrs. I started as a labourer and worked up to mechanic. I’ve working all kinds of crazy hours 40 12hr shifts 3 off then another 40+ 12hr shifts. The longest shift has been 32hrs straight through. I haven’t been able to keep this up over the last couple of years. My regular shifts are bad enough M-F 6:30am – 3pm or 2:30pm – 11pm which we switch every week.

If I go back to work I will have to do a duty to accommodate work program to adjust my hours, duties and rest periods. Just to give you a sample of a duty to accommodate work program.
Posted 12/10/2008 3:12 PM (GMT 0)
BigBry, you were working some long shifts.

I too thought it was age getting to me. I've been ill for many yrs but it seems as soon as I turned 40 2 yra ago, the real symptoms kicked it.

I am non uninion, though i work in manuf where the shop is all union. I live in Montreal, Quebec, Canada
I've never heard of a "Duty to accomodate" but would love to learn more

Thanks for that

Jen
Posted 12/10/2008 5:44 PM (GMT 0)
Okay guys, you are really scarying me, I just turned 41 on Saturday and have refused to believe any of this had to do with age darn it! I was diagnosed with Lupus at the age of 29, went into what I would consider a remission 4 years later, then the disease came with vengence in 2007 after a really bad situation at work which brought on a lot of stress.

Melissa
Posted 12/10/2008 5:52 PM (GMT 0)
 Do you take many sick days off of work?

 I take days off to go to the doctor.  I go to work sick so much that I don't feel guilty taking a whole day for a morning dr appt.  I have left school (I'm a teacher) early two or three times, and called to say I would be late, but I have never called in sick and stayed home.  I really should. 

2- how many hrs as week do you work? 40+

3- How long is the travel time to and from work? 10 minutes thankfully, I used to have a 45-minute commute.  I wasn't sick yet.  I don't think I could do it now.

4- Is your employer understanding of your illness? I have great administrators who are very accomodating.  They don't mind me wearing gloves while I teach.  They try to save me steps so I don't have to go up and down stairs so much.

 

5- what is the one symptom that makes you the most ill to not be able to work? vertigo and the accompanying nausea.  I get nauseated every day, but when it's accompanied by the dizziness and lightheaded feeling, I can't even hold my head up, much less teach.

 

Posted 12/19/2008 6:15 AM (GMT 0)
Sorry I haven’t written back sooner I have been sick with chest cold. I’ll try to sum up “duty to accommodate” in a short winded way. Basically your employer has an obligation to accommodate your working conditions because of your illness within limits of course. If your employer was to says that because you can’t do the regular hours and duties you will be laid off or fired without trying to accommodate your illness you would have a bona fide case to file a human rights complaint against your employer. It is always better to try to work out an accommodation and much easier if you have an advocate on your side as you are non-union you would have to find an outside advocate and I’m not sure of the resources available in Quebec. The Human Rights Commission in Quebec should be able to assist you in finding help. This is unless of course your employer is willing to work with you equitably and you can come to an amicable solution. Don’t just take what they say as fact and get a second opinion or have a advocate review your accommodation. I hope this helps and good luck.
Posted 12/23/2008 6:28 AM (GMT 0)
Greetings! I appreciate your questions and have enjoyed hearing from fellow HW friends of how work fits in with dealing with this illness. I started a new administrative position this last fall with a larger school district and it has been going as well as can be expected. They hired me knowing of my need for some accomodations and they have been great.

1. I take half day sick days for my doctor appointments (about every six weeks right now) and I have taken one and a half sick days in addition to this since August when I started. I had a case of the flu ( a viral type) and I have frequent sinus infections so I need time to see my family doctor for antibiotics sometimes.

2. I work 60-70 hours per week and this is very challenging. By Fridays I am extremely tired and I sleep a lot on the weekends. If my work with the students, families, and teachers was not so interesting and challenging, I would not push myself so much. Our two children are in college and my husband is very supportive of me so this works for me at this point in my life.

3. My travel time is lengthy - 50 - 55 minutes one way. I use this time to listen to books on tape or to my XM/Sirrius radio. On most days I leave the house by 7:00 AM and return home at 7:00 PM. Since moving to my new school district, however, I do not have as many night meetings. also, as I get some things organized I should be able to leave the school by 4:30 PM or 5:00 PM instead of at 6:00 PM.

4. My employer is understanding but some of my staff has a hard time with it since it is mostly an invisible disease. I find myself explaining things about my "disability" more than I would like to on many occasions. My role is a visible role, however, so I understand the need for these explanations. I feel as frustrated by my limitations as everyone.

5. My worst symptom is inflammation, achy joints, and incredible fatigue. I used to also deal with terrible nausea but this is not an issue now that my rhuemy has changed my meds around to address the nausea. I also have frequent kidney stones and the pain from this really slows me down, too.

Sometimes I wonder why I keep this up with all my challenges but I do and I fear I would give up on myself if I didn't keep trying. I suppose I will keep giving to kids and to education as long as the schools are willing to tolerate me! I have always been passionate about kids and learning and instruction for as long as I can remember. I hope to contribute to education for as long as possible. Eventually I hope to teach at the university level. I have been an adjunct professor at a local university and found it to be quite rewarding.

I hope this helps!
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