julieleaps
06-02-2007, 06:14 PM
As I read through the posts and the various symptoms, attacks, etc that folks deal with, it makes me wonder about jobs.
I was off work this winter after my ACDF surgery - I couldn't sit at the computer all day.
Now I am finding it hard to concentrate - I forget things that I'm supposed to do. Some of the simplest tasks feel like I'm doing them for the first time.
I really can't afford to be making mistakes with other people's business.
My boss has been great, but I'm sure that too, has it's limits.
So...I'm just curious about the rest of you and what you are doing about a job...:confused:
I was off work this winter after my ACDF surgery - I couldn't sit at the computer all day.
Now I am finding it hard to concentrate - I forget things that I'm supposed to do. Some of the simplest tasks feel like I'm doing them for the first time.
I really can't afford to be making mistakes with other people's business.
My boss has been great, but I'm sure that too, has it's limits.
So...I'm just curious about the rest of you and what you are doing about a job...:confused:
Sponsor
beagleboy
06-02-2007, 07:46 PM
I'm wondering about this, too. I am not able to function at work very well any more due to my fatigue and confusion and my review reflected that this year. I have a new supervisor who expects all managerial people to multitask. I can't even single task. I can't work less hours because I would lose my benefits incuding heath insurance and sick leave and, in case I need it, disability. Everythings gone of I get fired, too, although I don't think it will come to that because I've been there 10 years. Has anyone been able to get a note to take disabilty that doesn't have a DX? I couldn't bring myself to ask for one last time. Sometimes I feel like if I could just get out from under the stress of going to work everyday I would feel better.
MSNik
06-02-2007, 07:57 PM
Hi. I had to reduce my hours in order to continue working, but only for the first 6 months. Now, Im trying to find another job which is 40 hours a week. I guess Im lucky, because my husband has a Union job and his benefits are wonderful, including my Rebif and my doctors...
As far as disability goes- youll NEVER get it without a dx, and even then, you will need an attorney to even try. No one ever gets dissability the first time around and only about 30% of cases EVER get approved, all of them taking attorney representation. The reason is quite simply that as long as you CAN WORK at all...and I mean selling tickets in a movie theatre or working in an office answering phones, disability will conisder you EMPLOYABLE. It doesnt matter if its not enough money to support your family on, or if its a 75% pay CUT...if you CAN work, they WANT you to. Theyll fight you to the end! Keep in mind, most people who go on disability only make about 50% of what they used to,while working...so this isnt necessarily the way you want to go. Youre better off trying to cut your hours, or find a job with flex time, or working from home....
I found that once I got on MS meds I started getting less fatigued and had more energy....I also found that once my MS started to stabilize, i was good to go. Im hoping that if I find the RIGHT job with my 40 hours a week, when I do need the time off for relapse, etc, Ill be able to take it. Being that I am in outside territory sales, even now, with only working 30 hours a week- its good for me. On days when I feel really crappy, I end early. On days when I feel good, I work later. As long as I see my clients within the week, no one really cares if Im home at 3:30 vs. 5 pm.
Good luck
Nikki
As far as disability goes- youll NEVER get it without a dx, and even then, you will need an attorney to even try. No one ever gets dissability the first time around and only about 30% of cases EVER get approved, all of them taking attorney representation. The reason is quite simply that as long as you CAN WORK at all...and I mean selling tickets in a movie theatre or working in an office answering phones, disability will conisder you EMPLOYABLE. It doesnt matter if its not enough money to support your family on, or if its a 75% pay CUT...if you CAN work, they WANT you to. Theyll fight you to the end! Keep in mind, most people who go on disability only make about 50% of what they used to,while working...so this isnt necessarily the way you want to go. Youre better off trying to cut your hours, or find a job with flex time, or working from home....
I found that once I got on MS meds I started getting less fatigued and had more energy....I also found that once my MS started to stabilize, i was good to go. Im hoping that if I find the RIGHT job with my 40 hours a week, when I do need the time off for relapse, etc, Ill be able to take it. Being that I am in outside territory sales, even now, with only working 30 hours a week- its good for me. On days when I feel really crappy, I end early. On days when I feel good, I work later. As long as I see my clients within the week, no one really cares if Im home at 3:30 vs. 5 pm.
Good luck
Nikki
peace40
06-02-2007, 07:59 PM
I have just been dx, however have most likely had ms for 10+ years. I was working 4 days per week and I am now thinking of going to 3 days. My main reason for wanting to redue hours is the fatigue, I just find it so difficult and yet terrified of not having the money. I have also just started avonex and think this is adding to my fatigue. I will be very interested in how other go and I guess for us down here in Australia we do not get out disability payments via our employers so its not a problem as its through the govenment. Having said that because I am married I wouldnt get any pension. Anyway the job thing really does cause me to worry, even given that my workplace are understadning and have tried to assist with reducing work load (am a social worker working as a family counsellor). For me this is the most difficult aspect of ms as I love my job and career. Guess we just have to do the best we can.
MSNik
06-02-2007, 08:03 PM
Peace, see my post which came in seconds before yours did. I am on Rebif. Its the same interferon as Avonex. Hang in there.....I found within 3 months, my fatigue had lessened and I started to feel better. Cognitive issues, memory issues, everthing started to improve! Hope you find the same thing...
Nikki
Nikki
beagleboy
06-02-2007, 08:26 PM
I didn't mean government disability, I mean short term or long term disability from work. I think they automatically approve short term (90 days after a 30 day waiting period) but you have to justify the long term and apply for government disabilty. I know there is a list of conditons which are covered, but I can't ask. This was a benefit they added when my company got over 100 employees, small companies don't have it I think. I know you can't get the long term if you are able to do any job at the company at all.
beagleboy
06-02-2007, 08:44 PM
Also for me I will lose my health care benefits if I reduce my hours below 40 so going part time is not an option, even for a short length of time. If I have to pay the $800 a month insurance premium out of pocket I am better off with the 60% of my pay I would get on disabilty. At this point I am as concerned with losing my health insurance as I am with losing my job.
peace40
06-03-2007, 05:54 AM
Peace, see my post which came in seconds before yours did. I am on Rebif. Its the same interferon as Avonex. Hang in there.....I found within 3 months, my fatigue had lessened and I started to feel better. Cognitive issues, memory issues, everthing started to improve! Hope you find the same thing...
Nikki
Nikki thinks so much for the feed back. I did read your response and got side tracked (love the memory) so thanks for the reminder. Nikki you have been there and answered so many of my questions for this I am very grateful :angel:
Nikki
Nikki thinks so much for the feed back. I did read your response and got side tracked (love the memory) so thanks for the reminder. Nikki you have been there and answered so many of my questions for this I am very grateful :angel:
kimpossible67
06-03-2007, 08:48 AM
I went out on sick leave in January with dizziness. I'm a (was) special needs school bus driver. I didn't get dx'd until April but my doctors note says "I'm not able to drive a bus or do anything that would be considered hazordous"......so what does that leave? I just collect once a month for the next three years and then I'll have to make a decision.
ShelleyTab
06-03-2007, 09:18 AM
I do still work full time, 45+ hours. I am salary in a retail management job, so for anyone who know what that means I usually do about 55 hours a week on average. Come Christmas it's six days a week, pushing 60+ hours.
My symptoms are mostly fatigue, and with all my medicines some days I get dizzy or get that "pass out" feeling with the black spots. Some days I just plain can't think straight and get confused and distracted easily. Most days I feel "ok", just run down. I'm very young (early 20's) and on the average day I feel over 50.
My work is pretty understanding, and with all the junk with my latest relapse they've been better than great. There are only a few managers, and on a good day i'm great at my job. On a bad day, I just try to show up and not bother anyone else, handle the guests on the sales floor with a smile and pass them off to an associate, and get back into my office to hide in my paperwork. I have a lot of paperwork, which keeps me occupied for most of the time, and the nice thing about paperwork is you can go as fast or slow as you need to and reread everything. I think the key to keeping my job and my reputation as a good manager is to know that when i'm feeling good, or even ok, I have to work 10x harder than the average person and put in twice the hours. That way when things aren't so good i'm ahead of the game and I don't have to feel so guilty about leaving early. Lastly, I don't complain to the people at work about how I feel. If they ask, I say either "i'm ok" or "eh, getting there". Even through my relapse I tried not to lay it on them with the "I feel like crap", I leave that for at home with my husband. They are there to work, and as it is they need to work harder becuase I temporarily can't handle my job, they don't need the stress of my disease weighing them down any more than that. Besides, it would just bring into focus for them something they already know.
The other advice I have is stay on the level with your boss. My boss and I sat down every other day through the worst part of my relapse to discuss what was going on. This way if a new med made me irritable or loopy she understood and could react (i.e. putting me in the office and someone else on the floor). I told her as far in advance as I knew (sometimes 15 minutes) of doctors appointment and schedule changes - and I always covered my shifts myself and made the time up when I could (sometimes an hour at a time). I wanted her to see that I was trying to keep up at least the minimum 40 hours, and the weeks I couldn't I used benefit time, and tried not to let my sickness effect the store or my team.
I don't know how long i'll keep working, but I like working, so i'll try for at least a few more years. Energy builds on energy, the more I work the more energy I have, as strange as that sounds. And when I work the most I at least feel a good "worked hard" exhausted, not a MS exhausted, which I like.
So end result..? I recommend working if you can. It's a good distration, and it brings (me at least) a feeling of accomplishment, and of course, the money and possible benefits don't hurt ;)
My symptoms are mostly fatigue, and with all my medicines some days I get dizzy or get that "pass out" feeling with the black spots. Some days I just plain can't think straight and get confused and distracted easily. Most days I feel "ok", just run down. I'm very young (early 20's) and on the average day I feel over 50.
My work is pretty understanding, and with all the junk with my latest relapse they've been better than great. There are only a few managers, and on a good day i'm great at my job. On a bad day, I just try to show up and not bother anyone else, handle the guests on the sales floor with a smile and pass them off to an associate, and get back into my office to hide in my paperwork. I have a lot of paperwork, which keeps me occupied for most of the time, and the nice thing about paperwork is you can go as fast or slow as you need to and reread everything. I think the key to keeping my job and my reputation as a good manager is to know that when i'm feeling good, or even ok, I have to work 10x harder than the average person and put in twice the hours. That way when things aren't so good i'm ahead of the game and I don't have to feel so guilty about leaving early. Lastly, I don't complain to the people at work about how I feel. If they ask, I say either "i'm ok" or "eh, getting there". Even through my relapse I tried not to lay it on them with the "I feel like crap", I leave that for at home with my husband. They are there to work, and as it is they need to work harder becuase I temporarily can't handle my job, they don't need the stress of my disease weighing them down any more than that. Besides, it would just bring into focus for them something they already know.
The other advice I have is stay on the level with your boss. My boss and I sat down every other day through the worst part of my relapse to discuss what was going on. This way if a new med made me irritable or loopy she understood and could react (i.e. putting me in the office and someone else on the floor). I told her as far in advance as I knew (sometimes 15 minutes) of doctors appointment and schedule changes - and I always covered my shifts myself and made the time up when I could (sometimes an hour at a time). I wanted her to see that I was trying to keep up at least the minimum 40 hours, and the weeks I couldn't I used benefit time, and tried not to let my sickness effect the store or my team.
I don't know how long i'll keep working, but I like working, so i'll try for at least a few more years. Energy builds on energy, the more I work the more energy I have, as strange as that sounds. And when I work the most I at least feel a good "worked hard" exhausted, not a MS exhausted, which I like.
So end result..? I recommend working if you can. It's a good distration, and it brings (me at least) a feeling of accomplishment, and of course, the money and possible benefits don't hurt ;)
beagleboy
06-03-2007, 09:41 AM
Can they/will they make you do a desk job or awnser phones? The long term disability booklet from my company says you can't be able to do ANY job at the company.
julieleaps
06-03-2007, 12:45 PM
I have a disability benefit through work - I'm an insurance agent working in a small, 6 person office - and used it this winter when I needed ACDF surgery. My NS rendered me "totally incapacitated" on my first visit with him, pre-surgery! I went back to work part time about 2 months or so after the surgery.
I can understand Beary, your concern about losing health insurance - it's a HUGE cost factor these days, and it's why my husband can't retire yet. We are VERY fortunate to have quite good coverage.
Fatigue seems to be the biggest problem that most of you talk about. I am on day 2 with my new drug treatment (Lyrica) and feeling a bit drowsy and loopy. Hoping that will pass. I choose to start it on the weekend, because I have had soooo much time off work...an attempt to try Cymbalta took me out for a day and half last week! Trouble is, the homefront is suffering now as a result. Oh, well - I need to save some energy to get through the work week.
I am concerned about losing some ability to concentrate and multi-task. At work, that's important for me. I sure don't want to jeopardize any of my clients, or my employer's future, by making dumb mistakes that cost all of us.
Again, we are very fortunate to have the benefits we have through my husband's employment. I could go part time if need be, and my employer has been absolutely great about everything.
I too, love my job, and feel that when I can perform well, it feels good to be accomplishing something!
Thanks for all your feedback - it helps enormously to not be going it alone!
I can understand Beary, your concern about losing health insurance - it's a HUGE cost factor these days, and it's why my husband can't retire yet. We are VERY fortunate to have quite good coverage.
Fatigue seems to be the biggest problem that most of you talk about. I am on day 2 with my new drug treatment (Lyrica) and feeling a bit drowsy and loopy. Hoping that will pass. I choose to start it on the weekend, because I have had soooo much time off work...an attempt to try Cymbalta took me out for a day and half last week! Trouble is, the homefront is suffering now as a result. Oh, well - I need to save some energy to get through the work week.
I am concerned about losing some ability to concentrate and multi-task. At work, that's important for me. I sure don't want to jeopardize any of my clients, or my employer's future, by making dumb mistakes that cost all of us.
Again, we are very fortunate to have the benefits we have through my husband's employment. I could go part time if need be, and my employer has been absolutely great about everything.
I too, love my job, and feel that when I can perform well, it feels good to be accomplishing something!
Thanks for all your feedback - it helps enormously to not be going it alone!
MSNik
06-03-2007, 02:14 PM
Peace, Always here for you...dont be so surprised. Sometimes it does take me a few days to return messages, when things are as haywire as they are recently in my own world- but Im here! This board is what gives me the most satisfaction in my life at this time. Helping others, like they helped me when I needed them most. Youre going to be okay. Stick with your Avonex for awhile and let me know how youre feeling~
Nikki
Nikki
tiresome
06-03-2007, 05:05 PM
The statement that you have to have a lawyer to get SSDI is inaccurate. I am on SSDI and I never hired a lawyer. I went through the whole process myself and it took the same length of time had I hired one except I didn't have to give away any of my backpay.
I think of going back to work again at least part-time but with my flare ups and fatigue I worry I would miss too much work for even part-time employment. Have been working with DORS, my caseworker thinks I could do the work at home home things. I used to be such an organized person but now a days find myself to weak to do things properly.
I think of going back to work again at least part-time but with my flare ups and fatigue I worry I would miss too much work for even part-time employment. Have been working with DORS, my caseworker thinks I could do the work at home home things. I used to be such an organized person but now a days find myself to weak to do things properly.
MSNik
06-03-2007, 06:01 PM
Before you go saying its inaccurate. I thought we were talking about regular disability thru one's job. Not SSDI, which is social security disability. You practically never get either as of 2006's newest laws -without a lawyer, but in all honestly, Ive never seen any kind of disability given out with a legal fight. SSDI, is still almost impossible to get. You say you are on SSDI. How long has it been since you started on it? I have been sitting in court room after court room this month, with my job, not for me personally- and have not seen SSDI granted to a single person. With, or without attorneys. So, Im curious to know how long you have been on it. MS Society did an interesting article last month on this as well .the statistics for NOT recieving SSDI are staggering.
If you were fortunate enough to have it granted to you, might I ask when, and under what circumstances? As in how long did you work, what kind of work were you doing and are you getting enough out of it to replace your former income? I saw a nurse last week, who had a 70,000$ a year job, who actually is completely disabled due to a car accident, turned down for SSI...
Nikki
If you were fortunate enough to have it granted to you, might I ask when, and under what circumstances? As in how long did you work, what kind of work were you doing and are you getting enough out of it to replace your former income? I saw a nurse last week, who had a 70,000$ a year job, who actually is completely disabled due to a car accident, turned down for SSI...
Nikki
desperate1
06-03-2007, 06:44 PM
Gonna have to agree with you Nikki--unfortunately, the SSDI situation for people who NEED it is heartbreaking. However, I know four people currently on it for issues other than MS, and far be it for me to make assessments of anyone else's health, but I see one guy jog by my house daily and the other day he was up on a ladder completely replacing his own roof, and he's on SSDI for having chronic fatigue syndrome. (Now, I was diagnosed just Weds with CFS and Fibro, and I certainly will not be replacing any roofs anytime soon! I'm lucky if I can sweep the floor these days!) The sad fact is people work the system and "cheat" and that's why the laws are so tough and deserving people who are struggling to get through the day don't get it. Very, very sad.
I have a question for anyone currently on SSDI. How did you get by while you were applying for it? My understanding is you can't be working AT ALL for a full year before you apply (or something like that), and then it can take years to get approved. I've heard horror stories of people having to declare bankruptcy, move in with family members, lose everything--and still get denied once or twice before getting approved--if they ever do! I have been making less than a third of my previous income for the last year or so since my symptoms starting getting so bad, but from what I know, according to SSDI, since I can still make even that much, I must be "employable" so I would never get approved--and my guess is almost everyone suffering from MS, CFS, Fibro, etc, falls into that category of being too sick to make "enough" but not sick enough to get SSDI.
Personally I would never consider attempting it without a lawyer from the get-go. Then again, the whole process sounds so financially terrifying, I pray I never have to go through it. And my heart goes out to anyone who has to, but I would say find a lawyer with a good rep and a proven track record!
I have a question for anyone currently on SSDI. How did you get by while you were applying for it? My understanding is you can't be working AT ALL for a full year before you apply (or something like that), and then it can take years to get approved. I've heard horror stories of people having to declare bankruptcy, move in with family members, lose everything--and still get denied once or twice before getting approved--if they ever do! I have been making less than a third of my previous income for the last year or so since my symptoms starting getting so bad, but from what I know, according to SSDI, since I can still make even that much, I must be "employable" so I would never get approved--and my guess is almost everyone suffering from MS, CFS, Fibro, etc, falls into that category of being too sick to make "enough" but not sick enough to get SSDI.
Personally I would never consider attempting it without a lawyer from the get-go. Then again, the whole process sounds so financially terrifying, I pray I never have to go through it. And my heart goes out to anyone who has to, but I would say find a lawyer with a good rep and a proven track record!
tiredbunni
06-03-2007, 09:41 PM
I was disabled in 1993 and got SSD in 1994 for fibro, ME/CFS and TMJ. My disability was rated that I couldn't work any job. I was forunate enough to have short term disability and long term disability when it happened. This is all before I found out I had MS in 12/06. I miss working and being around people. You just learn to adjust to a new normal and live life.
I hope that you can work for a very long time. Those of you not dx with
MS yet and think you might have it, get your life insurance and any
other health insurance and disability in order. You never know when you will
need it.
Bunni
I hope that you can work for a very long time. Those of you not dx with
MS yet and think you might have it, get your life insurance and any
other health insurance and disability in order. You never know when you will
need it.
Bunni
KTMorra
06-03-2007, 11:06 PM
I don't know if I am lucky or unlucky but my job offered short and long term disability insurance and I signed up for both about 16 yrs ago . When it got to the point this February when there was no way I could continue working my 12 hr shifts I went out on short term disability for about 12 weeks. I am also carrying all the health and life insurance for the family. My Neuro wanted me to file for SSI so I looked into it. The cost of the insurance without working would have been 1200 a month. Needless to say there was no way we could afford that. To keep my insurances I ended up going back to work 4 hrs a day 4 days a week and my short term disability is picking up the difference. Some days are OK, others it is all I can do to complete the 4 hrs. My Husband has SSI for Parkinson's disease and wont be eligible for 12 more months to get Medicare. So if I were to have just left work we would have been in a world of hurt.
I am very lucky that my job has been so supportive and accommodating. There is almost always a way to modify your position to make it possible for you to keep working if you need to, sometimes you just have to think outside the box. I am now job sharing which works out great.
I hope this helps
Take care
KT
I am very lucky that my job has been so supportive and accommodating. There is almost always a way to modify your position to make it possible for you to keep working if you need to, sometimes you just have to think outside the box. I am now job sharing which works out great.
I hope this helps
Take care
KT