Crazy For Wanting To Work? Be Honest.

[TOBEY32]

Like to hear your experiences.
Waiting to hear from SSDS. Regardless of what I MAY want to do I may HAVED to go back to work. Starting off P/T, but may look into F/T later due to benies being better/less expensive.
Could it be too much and I have to pursue SSDS again? Could it cause stress which might trigger illness? Land me in the hospital? Yes, to all, and yet I wasn't finished working when Weg's came on the seen.

[delorisdoe]

I have continued to work from prediagnosis through treatment and after remission. I do not believe that stress brought on any of my flares but I suppose that could be the case. I would be stressed from not working though so either way...

You will not know if it is too much until you try I would think.

[Psyborg]

I've worked through my journey (for the most part) as well. But work did have to be flexible with me a bit while I was on CTX...it really wiped me out. Anyway I'm pretty sure stress was at least part of my issue, but I've since gone through some stressful stuff at work and had no flares. I think this is one of those things were everyone is different. Some folks are more sick than others. And of course everyone has differing levels of pain tolerance as well. I think that if you feel you can work, you should try to, but if you feel to sick to work you absolutely should not. Only you can really tell that part...JMO though :)

[pberggren1]

I would love to work agian, but it will most likely never happen.

[Tom]

I am on a disability but due to a broken back in 2000. I have always been active so going to work on one day and with in 3 hours your on disability for all intents and purposes was a hard pill to swallow. Now with all the other things that have happened to me since 2000 I still try to stay busy. but the wegs is my greatest foe so far and Ive dealt with cancer and dibeties. I was a railroader so my job was a job that required a good back. The railroad retirement board determined that I could work 4 hours a day out of the national economy, provided the employer could meet my restrictions. That meant that is McDonalds wanted to hire me and allow me to sit and lie down when I needed to with in that 4 hr window I could work, even if it was minimum wage. Having that said, I was 43 when I was taken out of commission, Im now 55. This is how it was put to me at the time I made the decision to retire on disability, Can you live on a fixed income? Are you willing to work for less than you were making and possibly no benefits. In my case, tried to apply for jobs but there were no benefits and maybe just a little more than minimum wage. I was set to get more on disability. So, is the employer you are with now willing to work with you? I beleive that there is a trial period where you can try to work after you are approved for SSDI. I know the railroad retirement board has a clause that says if you feel your condition has improved you can do a trial period with out hurting your status, I would check with the SS office.

[HopeinTN]

I have to muster thru it. I couldn't possibly go without a paycheck and like Leigh said, the stress of not working would kill me. To me, work is theraputic, and keeps me from being idle and worrying about my disease and the "What If's". I say, work while you can as there could possibly be a day where you can't. I worked from the hospital during every stay and it's what got me thru the long days.

I feel for those that don't have the option or can't work due to this disease, and hope that with each day comes better health.

[HopeinTN]

Oh, and I will say, this disease has made me dig deep to find strength that I didn't know I had (everyone around me knew, just not me).

[Al]

I've said this before: We are all different. But many of us want to work, and need to work, either for psychological reasons or just to stay alive. As a free lancer, I have no choice, except to give existing clients full attention at the expense of finding new ones. I agree that there can be more stress in not working than in doing a good job. On the other hand, the fact is that the idea of working eight or ten hours straight outside the house seems an impossibility (and, if not technically impossible, then extraordinarily stupid) for me, and, I am guessing, for many weggies. Bureaucratic policies and politics are not known for passionate rationality, but it still blows my pred-soaked mind that Disability does not allow for part time employment. Would not society, as a whole, benefit from the services of all its members, including those whose abilities are only attenuated, not incapacitated?

Al

[HopeinTN]

Nicely put Al.

[Tom]

Tobey, I still work in my wood shop and do what I can around the house. I agree it can be a source of pride or being a workaholic likie myself. I used to spend all nighters and all day in my shop because I wanted that feeling of being relavent. One thing I have found to help is that when I cant get the mojo to get to work, I find a little things to do and call it an accomplishment. That might be as simple as putting the dishes in the dish washer and turning it on and putting them away when they are done or something like getting a project done in the shop I call them accomplishments and I feel better about myself. But FWIW, we dont have to prove anything to anyone else, we are dealing with an accomplishment everyday.

[NicShaf]

I went back to work after a week in the hospital and two weeks of being at home getting some rest; this was all right after my diagnosis. I think it depends on the person, and the line of work they are in.
I'm at a desk all day, inputting info, taking calls and answering emails. A little stress due to the accounting nature of my job, but nothing physically demanding.
I found that going back to work helped me get back into a routine, which helped me cope with my diagnosis and treatment...and all the other fun things Wegs can throw at you emotionally. For the first couple months, I would take a nap in my car on my lunch break to get through the day, but as I felt better, I adjusted to everything and didn't need the nap as often.
Good luck going back to work.

[Dryhill]

I went back to work because I needed the money. I am lucky in that I am a self-employed taxi driver and can therefore work whatever hours I want to, so if I feel tired I just go home (yesterday -Monday - business was very quiet and I just could not fancy sitting around any more so packed up about an hour earlier than normal). Likewise if I cannot get going in the morning I go to work around lunch time.

To be honest though, if I did not have to work I would pack it in tomorrow. BUT I would be doing something; getting out taking photographs, researching my family tree, I would have to do something. A while back Al summed it up wonderfully, some people need to feel useful so going back to work or persuing a hobby can fill that need. Of course for quite a few on the forum going back to work is just a dream.

So should you go back to work? it all depends on:-

1. Your level of fitness.

2. The type of job you do.

3. Do you want to, because of getting bored at home.

4. Do you have to financially.

I wish you well in whatever choice you make.

Jim

[Al]

Well put, Tom. I would say that, in my terms, you are a useful guy.

Al

[annekat]

I've said this before: We are all different. But many of us want to work, and need to work, either for psychological reasons or just to stay alive. As a free lancer, I have no choice, except to give existing clients full attention at the expense of finding new ones. I agree that there can be more stress in not working than in doing a good job. On the other hand, the fact is that the idea of working eight or ten hours straight outside the house seems an impossibility (and, if not technically impossible, then extraordinarily stupid) for me, and, I am guessing, for many weggies. Bureaucratic policies and politics are not known for passionate rationality, but it still blows my pred-soaked mind that Disability does not allow for part time employment. Would not society, as a whole, benefit from the services of all its members, including those whose abilities are only attenuated, not incapacitated?

Al Actually, I was just approved for SS Disability. And you can still work part time as long as you don't make over a certain amount, like around $1000/mo., I think. If your career is more lucrative than that (as of course, it should be), then you'd be in a bad position of limiting yourself, unless Wegs was already limiting you to that level. But I'll be hard pressed to make that much in my pottery business with or without Wegs. I'm surprised at how easily I got approved, without having to appeal. I'm sure my age, 59, had something to do with it. The amount I'll get will not be enough to live on, though, so I will have to work, rent out an RV space, etc., to get by. Fortunately, at this point, I am able to work at the pottery, and having the disability payments, especially the retroactive lump sum, will make it easier to run the business efficiently and take care of other needs in my life without always living on the edge. I will have to be very careful, though, as I'll still be trying to dig my way out of some financial problems that currently exist.

Anne

[Al]

Actually, I was just approved for SS Disability....
Thanks for clarifying this, Anne. I'm a little older than you, and scared to look into social security issues. Even when I become eligible for the full amount, it won't be sufficient to live on. So I will try to keep, er, pottering away as long as I can.

Al

[marta]

Tobey, I still work in my wood shop and do what I can around the house. I agree it can be a source of pride or being a workaholic likie myself. I used to spend all nighters and all day in my shop because I wanted that feeling of being relavent. One thing I have found to help is that when I cant get the mojo to get to work, I find a little things to do and call it an accomplishment. That might be as simple as putting the dishes in the dish washer and turning it on and putting them away when they are done or something like getting a project done in the shop I call them accomplishments and I feel better about myself. But FWIW, we dont have to prove anything to anyone else, we are dealing with an accomplishment everyday.

For me you've hit it on the head Tom. It's about feeling relevant, about having a sense of accomplishment each and every day. I really enjoy my job and moreso the people I work with but I'd much rather spend my precious energy on accomplishing my own goals rather than those of my employer. I'm on disability. I've started back at work part time, but I'm working from home because I don't want to be in the petri dish AKA cubicle land at the office. I find I'm more productive at home as I can pick up my computer and do whatever needs to get done anytime of the day. Having a kid at home also sucks up a bunch of energy that would have been allocated to my employer pre diagnosis. I have found that all of the projects related to Wegener's and more recently to AI disease that I've concocted since diagnosis keep my brain active and allow me to feel relevant and like I'm doing something that gives me a sense of accomplishment and motivation. If it wasn't for the financial side of things, I would be thrilled to have the opportunity to pursue my new pet projects and see them to fruition or completion (although the latter is a BIIIIG dream). So for me the barrier is a financial one as well as a physical one, but I'll come up with a solution to that one. Just watch. Give me some time though - as with Wegener's it's all about baby steps. Teeny tiny little baby steps.

Best of luck going back to work.

[annekat]

Thanks for clarifying this, Anne. I'm a little older than you, and scared to look into social security issues. Even when I become eligible for the full amount, it won't be sufficient to live on. So I will try to keep, er, pottering away as long as I can.

Al SS Disability is confusing, as to how it really works, for sure. I could have some of it wrong but will find out as I go along. I do know it is OK for me to keep working to a certain extent, if I can. If you can wait for the full amount, I'm sure that will help, though I know it must be nerve-wracking wondering if you'll be able to keep working indefinitely. Hang in there.... I'm glad your career keeps you at home; that would tend to eliminate a lot of the stress and expense, vs. having to commute to a job and be beholden to someone else.

Anne

[KathyB]

I have been a lifetime career educator and accustomed to 60+ hours a week dedicated to my profession. Committee/foundation work, business partnerships, interaction with the school community (parents, students, teachers, legislators, etc), administration & supervision, continuing education, ... You get the picture. Not to mention raising three sons on my own for the past 15 years before remarrying 2 1/2 years ago. And my husband is a high school principal -- another 60+ hours a week career! So you see how WG put the skids on our lifestyle. While it's been time to evaluate the quality of our life, it's brought about a profound sense of loss. At least at first! Then I started to reflect on all my accomplishments, goal achievements, and satisfaction on my career as a whole. Two things I always taught my sons (and students) -- "your name is your most valuable asset" and "surround yourself with people who bring out the best in you". Applying those principles to my life and career, I am fulfilled, grateful, and blessed for my opportunities and experiences.

So where am I now? I have had to adjust my thinking to accept I will never have the same physical energy to do my job. Decisions will need to be made soon about leaving my position. I've had great support from my colleagues and staff, but it is ultimately unfair to them because I have had to totally avoid all the public contact of my position due to immune-suppressants and my scary bout with pneumonia last month. It's what I do best and miss the most. I'm working from home and if I remain well over the holidays, hope to at least spend a couple of 1/2 days a week in the office after the first of the year. My doctors support disability status, so that seems to be my best option should it be approved. All will need to be decided in the coming months.

I'm grateful my condition at this point allows me to have choices. It's an emotional time, but quality of life seems to be the focus of our discussions and decision making. Keeping my mind and body active is also important -- the fog I've been in needs to go away! Reading your stories is also very helpful in understanding my frustration level! You all are very inspiring!

KB

[annekat]

You all are very inspiring!

KB You are, too, Kathy! Thanks for the well-expressed thoughts, hang in there, and best of luck in getting it all worked out.

Anne

[Dirty Don]

I have been a lifetime career educator and accustomed to 60+ hours a week dedicated to my profession.-- the fog I've been in needs to go awayKB

Me too! I added coaching to it too! Looong, but fulfilling days! Anyway, have been retired for a few years, but I miss Friday nites and the kids mostly...the activity...thought about volunteering, then I remembered the subs' notes when I had been gone...LOL...wouldn't wish that on myself let alone anyone else! So, have golfed and played hard for a few years...then THE flare...like you med history seems to indicate I've had WG for a few years, not just this summer! Yikes! How would I know! Now, with the disease first and foremost on my mind, I don't feel like I have the abilities to be who I once was, only a mere sketch of what I once was! Sheesh...frustrating, but NOT the end, still got lots of stuff to do! As for the fog, I don't think it goes away anymore Kathy...it recedes, it tugs at you, it threatens you, but it doesn't go away...how do I know, I've only been at this for 4 months, but indicators are...I AM A WEGGIE!!! LOL...gotta smile, ya know!

Don

[Al]

I'm grateful my condition at this point allows me to have choices. It's an emotional time, but quality of life seems to be the focus of our discussions and decision making. Keeping my mind and body active is also important -- the fog I've been in needs to go away! Reading your stories is also very helpful in understanding my frustration level! You all are very inspiring!


Yes, Kathy, this disease does often force us to make decisions and changes. So do other life changers: death, divorce, getting the ax, and so on. But to be human, we must believe in other doors to open, new mountains to climb. (Choices, as you point out, are the name of the game.) These things are hard to accept (and surely a challenge to accomplish), but not impossible while we yet have life and breath. For you, it is truly a new mountain when you give up what has defined you to this point. I think you are wise to ease out of the old and into the old--and it is a great thing that this is a possibility for you. I'm with you about the "fog" problem. I wonder, every morning, whether it is the mist of the meds, growing older, or what. But I have learned that, in my case, much of that burns off later in the day. It helps to write a bit, read a bit, do a crossword puzzle, and think about larger problems outside my own. In other words, when the pred clouds are thick, I have decided that it helps to drive around them, to re-wire the brain a bit. Can't say it always helps; you can, as a Las Vegas cabbie once philosophied to me, "you can paint a gahbage can, but it's still a gahbage can." I'm still a geezer. after all...!

Do well with your new mountains! We'll hike with you when we can.

Al

[delorisdoe]

I was never advised to stay away from public places?

[Al]

I was never advised to stay away from public places?

Is that a question, Leigh? I was advised only to stay away from "large, rowdy crowds". I suppose, like riots, urban camping sites, marine boot camps, family reunions, and the like. Hey--and shopping malls this time of year! Cool!

Al

[delorisdoe]

I guess it was a statement of confusion. I was not warned of riots urban camping sites, marine boot camps, family reunions or the like. I worked in a very public enviroment...more public than most of the places you just listed. I was not ever told to do anything differently

[Al]

I guess it was a statement of confusion. I was not warned of riots urban camping sites, marine boot camps, family reunions or the like. I worked in a very public enviroment...more public than most of the places you just listed. I was not ever told to do anything differently

Well, just don't do a conga line at a masquerade ball.

By the way, Leigh, what, exactly, is your avatar? Are you cursing your suction, or trying to inform us of a vacation to Lake Mead? It the latter, Don't do a conga line with the tourists.

Al

[delorisdoe]

I am not currently on any immune suppressing meds so i can conga till i cant conga no more. That is my new vacuum.

[Al]

I am not currently on any immune suppressing meds so i can conga till i cant conga no more. That is my new vacuum.

Ah. That explains everything. I think.

[delorisdoe]

when I was on cytoxan for 2+ years I was not told to avoid anything.

[delorisdoe]

not even conga lines

[Al]

not even conga lines

So my theory is busted. But how do you really feel about your work environment?

[Dirty Don]

No, I've been told the same, avoid large bug carrying crowds...best for me, not mandatory, but risky enough. But it works well enough, especially when the vacuuming needs doing...can't breathe in all that dust...WHAT!!!!!!!! LOL, hey, it works...sometimes!!

[Al]

No, I've been told the same, avoid large bug carrying crowds...best for me, not mandatory, but risky enough. But it works well enough, especially when the vacuuming needs doing...can't breathe in all that dust...WHAT!!!!!!!! LOL, hey, it works...sometimes!!
The "I'm a Sick Old Man" ploy, eh, Don? So it sometimes works...?

Al

[Dirty Don]

The "I'm a Sick Old Man" ploy, eh, Don? So it sometimes works...?Al

Only sometimes, mostly when 'she's' not looking!! LOL

[vdub]

I'm retired and enjoy it immensely. I retired 2 years before the WG hit. But, when I was working, I enjoyed that immensely and wouldn't have given it up for anything. If you can help it, don't let the disease dictate your life. Do things on your own terms. I think working can be very theraputic and provides a needed social environment.

[Dirty Don]

Do things on your own terms.

Have been retired nearly 10 years, made it 9 before WG landed, have been and still am very satisfied with my decision to retire. Work was not in my plan, I golf, read, communicate, travel, blah blah blah...but, like you vdub, I loved my work...but I could NOT imagine doing what I did under these WGian circumstances...not at all...I am so in awe of those who do...amazes me to have that kind of drive and focus!

[TOBEY32]

I have heard that this Trial Work Period that SSDI offers requires being approved for SSDI FIRST. In other words, you can't look/find work while still waiting to be approved.
Does anyone know?
I'll speak w/ my SSDI case worker about it. There's info on SS's website regarding this but it's not always easy to follow...

[annekat]

I have heard that this Trial Work Period that SSDI offers requires being approved for SSDI FIRST. In other words, you can't look/find work while still waiting to be approved.
Does anyone know?
I'll speak w/ my SSDI case worker about it. There's info on SS's website regarding this but it's not always easy to follow...

I think their definition of work is anything more than a certain amount, like $1000 a month. So it is OK to be doing a little work when you apply and are waiting to be approved. I know I was working at my self employment when I applied, and they knew it, and I was making less than $1000 a month. How else would I get by? Or one could be getting welfare, food stamps, etc. Plus I've been relying on loans from relatives. And then I was approved. But this trial work period is something different; I think it is for people who have disability and want to try to ease back into working full time at a real job that makes enough to live on. They give you a break and don't stop your payments while you see if it is manageable. So if I suddenly felt a whole lot better and went into a lasting remission, I could ramp up my business and make more at it for awhile, or get some other good job, and not have my payments stopped until the end of the trial period. As for already working full time at a good paying job while applying, I think that would count against you because they'd think you are able to work and don't need the help. That is my understanding, which could be wrong, so, yes, talk to your case worker. I agree about the SS website; there might be something on there about it, but it would be hard to find, and then you'd have trouble finding it a second time.

Anne

[Sangye]

Yup, Anne's got it right. :thumbsup: