Have You Dealt W/ Physical Obstacles in Working/Returning to Work?

[TOBEY32]

Haven't worked since being diagnosed.
Waiting to hear back on Disability, and yet would rather work.
Originally thinking F/T work (a service position), but due to numb feet (Prednisione), P/T might be the reality. F/T means more $$, better benefits and paying less for health insurance.
There's always call centers (sitting), but most deal w/ stuff that doesn't interest me.

David

[Dryhill]

Being self-employed I had no option but to return to work, fortunately as a taxi driver all I am doing is sitting and driving a car. Ok so I do have to get out a lift the odd suitcase into the car or help the little old ladies with their shopping. During the summer months and until this week I have been able to keep the windows open a bit, but now it is getting colder I have the heating on and the windows shut which is oh so good for infection.

I have found going back to work helps me mentally. I am not sitting watching boring day time tv, I meet different people, I feel I am in charge and not WG and of course I am not fretting about the lack of money. I started by just doing 4 hours or so a day until now I am doing an eight hour shift. I used to work nights and have now switched to only doing days as I did not want the stress of drunks and the worries about violence.

If you would rather work see if you can go back part-time with the hope of extending to full-time. BUT do not overdo things and DO be prepared to having to take a few days off to rest. The one area of concern during treatment is you have very little immune system to protect you from infection. Having said that Oregon Scientific do a range of air sanitisers (they even do one to go in a car - I have one on order). Basically I recommend you give it a try but do take things gently and listen to your body.

Please let me know what you do and how you get on.

[Al]

Haven't worked since being diagnosed.
Waiting to hear back on Disability, and yet would rather work.
Originally thinking F/T work (a service position), but due to numb feet (Prednisione), P/T might be the reality. F/T means more $$, better benefits and paying less for health insurance.
There's always call centers (sitting), but most deal w/ stuff that doesn't interest me.

This is an often overlooked issue, especially by doctors ("not my union"). There are many facets here: On the one hand, many of us have a hard time working as much as we would like (if at all). On the other hand, this is an expensive disease, and there are many of us who are self-employed and just can't, for economic reasons, stop working. There is, for the self-employed, no option to go on disability. On the third hand...well, that is a further discussion. The fact is that, for many of us, working is necessary for reasons over and above the state of the local economy. In fact, we all, I think, want to feel useful. To feel otherwise is part of the downward spiral. By being useful, we have, in a psychic sense, a reason to live and a right to our own little corner of the universe. I strongly feel that when doctors drop the "quality of life" phrase, they need to not just mouth it, but back it up with a real understanding of this issue. It may be, of course, that the work you can do is a shadow of what you could accomplish in your prime. No matter. The important thing is to be...--it's still the best word I can think of--useful.

Al

[Sangye]

I haven't been able to return to work since I was dx'ed and began treatment in 2006. I was a self-employed chiropractor-- no way to do that job in a weakened state. I've had many complications and flares in these 5.5 years. I don't even know how many times I've been hospitalized anymore! The complications have slowed down at least, but I'm nowhere near being able to work. My level of function is very low.

[Palmyra]

So Tobey32, I agree that this is a very good topic.

I provide the lion share of medical cost needs for my affected daughter. She also wants to work and does so part time, but this disease makes continuous secondary education or F/T work very difficult. Here in the US, disability would provide a modest supplement to her income, and might negatively impact her insurance options (I think this is the case...one then uses medicare?)

The expense of the occasional trip to one of the major Vasculitis centers, and expensive medications are a bit mind boggling. To those of you in other English speaking countries, your experiences are obviously different due to your governmental national health care system.

Has anyone mastered the art of enough financial assistance through work or other benefit, and the ability to pay for good medical care/meds here in the US?

[Dryhill]

[QUOTE=Al;50244] The fact is that, for many of us, working is necessary for reasons over and above the state of the local economy. In fact, we all, I think, want to feel useful. To feel otherwise is part of the downward spiral. By being useful, we have, in a psychic sense, a reason to live and a right to our own little corner of the universe. ........ The important thing is to be...--it's still the best word I can think of--useful./QUOTE]

Good comment Al.

[Al]

I haven't been able to return to work since I was dx'ed and began treatment in 2006. I was a self-employed chiropractor-- no way to do that job in a weakened state. I've had many complications and flares in these 5.5 years. I don't even know how many times I've been hospitalized anymore! The complications have slowed down at least, but I'm nowhere near being able to work. My level of function is very low.

Sangye, I understand and appreciate your physical condition; most of us are compromised in that regard, though not all of us have to do all those odious trips to the hospital. But this does not negate my point that as long as we have the drive to me useful, there is hope. And I have to add that, per my conception of the term, you, Sangye, are one of the most useful among us.

Al

[pberggren1]

Sangye is an ANGEL.

[Al]

Sangye is an ANGEL.

(Phil is pretty useful, too!)

[jola57]

This disease is so different in us all that to say you can or cannot go back to work is unfair. I have been off just at the very beginning in 2006/2007 for , I think, 1 month and at that it coincided with Christmas. But then I am also self employes and can go home when I need to or come late in the morning or take a day off. Also I tolerate the meds very nicely. With the exception of the dropped foot, and even then I just used a cane and protected myself from falls by "hugging" the walls as I walked. On the other hand there is Sangy or Phil, who there is no way, can go back to work. So each case is so different. I agree with Dryhill, working is soooo theraputic, it makes you want to live. But how can you work if it takes all your energy just to be up and about. Take each day at a time, go part time and if you are OK increase your hours. Another problem is enployers who want their employees to be fully productive. Again, no easy answers here. Some would love to be able to work and just plain can't. I am in awe of all of you that suffer greatly and are just happy to be up and about and putter around the home. I remember the first months and they were just brutal on me and everyone about me.