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.

[Al]

This disease is so different in us all that to say you can or cannot go back to work is unfair.

Yes, Jolanta, there is unfairness in all this. Unfairness in how the disease is easier on some than on others, and unfair in the response of others--especially employers. I showed up at a previously booked job, only to see my replacement already setting his gear up. The client said, "I had heard that you had been sick, so I just assumed...." So I went through the stress, but with no income. (A happy ending, though, at least for me: The client learned that he preferred my work to the other guy's, so all that has been taken care of.) The immediate lesson is, of course, self employed folks should never get sick...! Now, having said that, there is one more unfairness we need to mention: This is an expensive disease. Those of us who require commercial insurance (e.g., all US sufferers) have a lot of extra worries. Many of us are under insured, or have policies that are not inclusive enough--and some of us have no insurance at all. I could not possibly afford individual insurance; I am extremely lucky to be on my spouse's policy. Even that expense is hard to make on a month to month basis. (And many do not have even close to what I have.) I am one of the fortunate ones who can work nearly normal hours (most days). I do, however, need more sleep and more rest than I did in my prime, and I have had to farm out more work, in order to keep my workload (and stress) down. All that is costly, of course, and the expense is stressful in itself. Nevertheless, I do know that my career is not the same, and never will again be. And yet, I truly do feel that my best work is still ahead of me. So it behooves me to be useful in other ways, while still trying to pay for what needs paying for. As you say, each case is different. And none of us can afford to be judgmental.

Al

[Jaha]

I just read this post and feel that it was meant for me to read it at this exact time. Thanks everyone for this thread, as it touches base. I agree with everything that has been said. I am also self-employed. I was dx 9/2/2010, all the changes in meds, all the pains, all the stress and worry, all the fighting about ins issues, all the guilty feelings that come from not being able to do what you did in the past it all means nothing when it comes to our lifes and quality of lifes. That's why finally in the last 2 wks I've taken baby steps to give some of my work and duties to others. (very hard thing to do for me). I feel like a big weight has been lifted from me. Everyone wants to feel useful, and their are plenty of ways that we all add to the plate, but even that has to be limited by our personal health. Thanks I really needed all of your thoughts right now on this subject.
Jana

[Sangye]

That's great, Jana. I love when that happens!

Thanks Al and Phil-- it was nice to wake up to your kind words today. :smile1:

The issue of health insurance is a big deal. Thankfully I had private insurance when I got sick-- covered 100% of expenses after the $3,000 annual deductible was met. They never denied anything (except for a brief but stressful denial of Cellcept). Even though I was on Medicare by 2008, I held onto my private insurance for nearly 2 more years, hoping I'd be able to go back to work. (If you work, you lose Medicare) However, the monthly premium continued to skyrocket. By the time it reached $750 I had to cancel it. I couldn't afford to pay it each month, and I certainly couldn't afford to pay it if I did go back to work. The premium had increased 400% in just 6 years! This health insurance mess we have in the US is like shackles.

Somewhere among the depression about all of it is a little spark of hope that I can work again. I absolutely loved being a chiropractor.

[Al]

The issue of health insurance is a big deal. Thankfully I had private insurance when I got sick-- covered 100% of expenses after the $3,000 annual deductible was met. They never denied anything (except for a brief but stressful denial of Cellcept). Even though I was on Medicare by 2008, I held onto my private insurance for nearly 2 more years, hoping I'd be able to go back to work. (If you work, you lose Medicare) However, the monthly premium continued to skyrocket. By the time it reached $750 I had to cancel it. I couldn't afford to pay it each month, and I certainly couldn't afford to pay it if I did go back to work. The premium had increased 400% in just 6 years! This health insurance mess we have in the US is like shackles.

Somewhere among the depression about all of it is a little spark of hope that I can work again. I absolutely loved being a chiropractor.

Yes, Sangye--a real mess, and I don't think we have to go into political detail to understand this. It is one of my persistent dreams that we can have some influence in improving this situation. It may be a pipe dream, but I have it, nevertheless.

A spark of hope means a lot, but I would add that you have been, at least in a metaphorical way, a chiropractor to us all along; we have all benefited from your adjustments!

Al

[delorisdoe]

That's great, Jana. I love when that happens!

Thanks Al and Phil-- it was nice to wake up to your kind words today. :smile1:

By the time it reached $750 I had to cancel it. I couldn't afford to pay it each month, and I certainly couldn't afford to pay it if I did go back to work. The premium had increased 400% in just 6 years! This health insurance mess we have in the US is like shackles.

Somewhere among the depression about all of it is a little spark of hope that I can work again. I absolutely loved being a chiropractor.

$750 a month???? just to keep your insurance going. I am so sorry to hear this.

[Al]

$750 a month???? just to keep your insurance going. I am so sorry to hear this.

That's the American way, don't you know....

[delorisdoe]

That's the American way, don't you know....


a case of the grass is not greener on the other side for sure. My staff often mumble about how unfair it is that the drug plan only covers 80% and they had to pay 10 bucks for a drug.

[Al]

a case of the grass is not greener on the other side for sure. My staff often mumble about how unfair it is that the drug plan only covers 80% and they had to pay 10 bucks for a drug.

Sometimes the grass is greener, Leigh. And sometimes it is just a lot of dandelions and crab grass that are the right color but not so good for the lawn.

10 dollars for a drug? What an outrageous thing, yes...?

Al

[delorisdoe]

Sometimes the grass is greener, Leigh. And sometimes it is just a lot of dandelions and crab grass that are the right color but not so good for the lawn.

10 dollars for a drug? What an outrageous thing, yes...?

Al


That is quite alot for your average prescription. My husbands boss pays his premimums from the day you get coverage and my boss pays ours 100% when you reach the 5 year mark-or when you are the big boss like I am-so I actually dont pay the monthy premimum or the $10.00 at the drug store.

[Al]

That is quite alot for your average prescription. My husbands boss pays his premimums from the day you get coverage and my boss pays ours 100% when you reach the 5 year mark-or when you are the big boss like I am-so I actually dont pay the monthy premimum or the $10.00 at the drug store.

To quote a friend of mine, "I am not whining but I just want to say that it really hurts." A challenge here, folks: If the politicians can't solve the mess, maybe we can wield our own massive influence...?

Al

[jola57]

I am still back at the base, Sangye. wow they raise the insurance premium even though they know you are sick and not working? OK this is bad very bad. At least in Canada the premium stays the same if you get sick if you have a private one. the provincial/ government one changes slightly once in a while.

[Al]

I am still back at the base, Sangye. wow they raise the insurance premium even though they know you are sick and not working? OK this is bad very bad. At least in Canada the premium stays the same if you get sick if you have a private one. the provincial/ government one changes slightly once in a while.

Ah, But is the grass greener? There are arguments to be made regardless of where the fence is....

Al

[delorisdoe]

I am not sure why anyone would question our health care in canada. It is not perfect for sure. Some people have long waits and everyone knows somebody who knows someone who died due to a long wait but I have never spent one minute worrying about how I would pay for my care. I realise there are better run health care oversease but canadas is pretty damn good. for that I am thankfull.

[Sangye]

Yeah, it's amazing that anyone uses long waits and occasional deaths as part of an argument against Canada's health care. The waiting time for uninsured people is REALLY long, as because so many just don't go to a doctor. And the deaths are countless.

[Sangye]

I am still back at the base, Sangye. wow they raise the insurance premium even though they know you are sick and not working? OK this is bad very bad. At least in Canada the premium stays the same if you get sick if you have a private one. the provincial/ government one changes slightly once in a while.
Wow, that is not even discussed here. No one cares if you're sick or not-- pay the man at the door or you don't get inside.

[Sangye]

Yes, Sangye--a real mess, and I don't think we have to go into political detail to understand this. It is one of my persistent dreams that we can have some influence in improving this situation. It may be a pipe dream, but I have it, nevertheless.

A spark of hope means a lot, but I would add that you have been, at least in a metaphorical way, a chiropractor to us all along; we have all benefited from your adjustments!


Al
I have that same dream.

Thank you for your kind words, Al. :smile1:

[Rose]

I have been uneducated as far as the insurance system works here in South Africa....as have my doctors and also the lawyers whom I approached and who act for the man in the street when they have issues with insurance claims. Life threatening conditions are covered 100% here but WG is not listed as a life threatening condition so when I applied for cover and when my doctors motivated it was turned down time and again. After my annual limit for medication was exhausted each year around May I have had to pay for my cellcept and all other medication, plus any doctor's visits and blood test when that annual annual limit was exhausted around September. However, I discovered that Chronic kidney Disease is considered a life threatening condition REGARDLESS OF CAUSE and all medical insurance companies must pay 100% for all medications, tests, doctors....anything related to the condition. I made this discovery in early September this year. I phoned everyone concerned, pointed this out and my condition was covered immediately but I am not being reimbursed. Apparently, because the ICD10 code for Chronic kidney Disease was never submitted (although blood results and kidney boipsy were) i am being held responsible. The doctors kept submitting the !CD10 code for WG, commented that I had kidney damage on the motivation but never gave an ICD10 code for Chronic Kidney Disease. Seems everyone at the insurance company just looked at ICD10 code for WG and ignored everything else. Had I been under the care of a nephrologist this would never have happened!!!

[Al]

I have been uneducated as far as the insurance system works here in South Africa....as have my doctors and also the lawyers whom I approached and who act for the man in the street when they have issues with insurance claims....

Amazing story, Rose. Several lessons here, including the fact that there are many ways to screw up a system. The grass may not be greener on the other side of the fence; in fact it may be pretty weedy on all sides. Good luck with your particular mess!

Al

[Dryhill]

I agree Al it does seem pretty weedy on all sides. Here in the UK each hospital has a set budget and when that money is spent it gets harder and harder for the hopsital to operate. My doctor wants me to have four doses of Rituximab but it is very expensive (over £10,000 per dose) so he has to get approval. Now I am beginning to feel guilty that spending over £40,000 on me means that there is £40,000 less for other people. It had better work or I am going to feel really down that the money was wasted and might have been better spent on someone else.

Of course it would be terrible if the hospital has already run out of money because then I would have to wait till the next years budget is received, and that is in April 2012 There are plenty of people who are waiting for operations/medication but the hospital in their catchment area is broke, so have to wait till the next financial year.

The world of medicine has become so very expensive that no system seems to be ideal. All systems seem to have some form of patiant worry built into them.

[Al]

...The world of medicine has become so very expensive that no system seems to be ideal. All systems seem to have some form of patiant worry built into them.

Weedy, indeed. So, the dream will have to be backed up with a lot of hoes and rototillers and high-quality sod....

Al

[Dryhill]

Weedy, indeed. So, the dream will have to be backed up with a lot of hoes and rototillers and high-quality sod....

Sorry I am ill, but I don't mind sitting down and watching you do the work!

[Al]

Sorry I am ill, but I don't mind sitting down and watching you do the work!
Ah, that's the rub. I'm a Sick Old Man myself, don't you know....

Al

[Dryhill]

Ah, that's the rub. I'm a Sick Old Man myself, don't you know....

Well I do believe you to be a mere whipper snapper seeing with luck I should have my 63rd birth day in less than a month. But having said that perhaps we should both sit down and have a good old chinwag whilst watching the others do the weeding?

Oh by the way on your pretty avatar where is my sister, she lives on Vancouver Island?

[Al]

Well I do believe you to be a mere whipper snapper seeing with luck I should have my 63rd birth day in less than a month. But having said that perhaps we should both sit down and have a good old chinwag whilst watching the others do the weeding?....Oh by the way on your pretty avatar where is my sister, she lives on Vancouver Island?
This whipper snapper has you beat, but oh-so-slightly! But, as I was telling Don (about the same age), I have a nice deck and a couple of rocking chairs....

Vancouver Island is the most distant island in the avatar, but is hard to see in low resolution. As Islands go, it is very large, and continues well to the north of my snapshot. Most of the population is in the south, and along the mainland (eastern) side. Do you know what town your sis is in or close to?

Al

[Dryhill]

My dear sister lives in Ladysmith and one of my nieces lives in Victoria.

Al, I love the idea of your rocking chairs, but I am afraid I will never be able to try either one out. If I was sitting on your deck looking at Vancouver Island then my sister and I are far too near one another for safety.

[Al]

My dear sister lives in Ladysmith and one of my nieces lives in Victoria.

Al, I love the idea of your rocking chairs, but I am afraid I will never be able to try either one out. If I was sitting on your deck looking at Vancouver Island then my sister and I are far too near one another for safety.

Ah. One of those relationships...! Ladysmith is almost visible from my deck, but I think a little out a view to the north, and hidden by another island between. So I think you would be safe, unless your sis is a strong cold water swimmer against forceful tides. But you never know....

Al

[Dryhill]

Ah. One of those relationships...! Ladysmith is almost visible from my deck, but I think a little out a view to the north, and hidden by another island between. So I think you would be safe, unless your sis is a strong cold water swimmer against forceful tides. But you never know....

We get on well if it is by letter, email or phone it is just actual contact that causes near thermo-nuclear fall-out :unsure:. The problem is she is about 15.5 years older than me and due to busy parents running their own business sis got lumbered with raising me. Not a good thing for a teenager who wants to get out and party. She still thinks that she is my parent and that I should listen to her. I do care for her a lot, but would never dare tell her because she would then be insufferable.

Jim

[Al]

do care for her a lot, but would never dare tell her because she would then be insufferable.

Ah. Sounds a bit like how I view my own sis, who is older. I was afraid of her when we were growing up, but she has mellowed out a lot. Now she just plays golf, in the next town over from Don.

Al

[KathyB]

Since being diagnosed in late August, I've had the opportunity to work from home thanks to an incredible office staff and amazing support of co-workers. However, I've come to the realization that I won't be able to keep up with the time and stress demands required. I'm looking at disability retirement through my profession and have the full support of my doctors. At age 55, quality of life and continued improved health are the priority. Fortunately, my circumstances lend themselves to this possibility so long as I plan carefully! The tough part is the uncertainty of WG. Just when you think you have life all planned out, things change! So I've accepted this disease as a part of my life and have plenty of hope for a productive future.

Thanks for all the discussion topics -- it's really good for me!!

KB

[Dryhill]

Since being diagnosed in late August, I've had the opportunity to work from home thanks to an incredible office staff and amazing support of co-workers. However, I've come to the realization that I won't be able to keep up with the time and stress demands required. I'm looking at disability retirement through my profession and have the full support of my doctors. At age 55, quality of life and continued improved health are the priority. Fortunately, my circumstances lend themselves to this possibility so long as I plan carefully! The tough part is the uncertainty of WG. Just when you think you have life all planned out, things change! So I've accepted this disease as a part of my life and have plenty of hope for a productive future.

Thanks for all the discussion topics -- it's really good for me!!

Kathy, welcome to the forum. I am pleased that have such a positive attitude to this wonderful new adventure in your life and it certainly is an adventure as you never know what is going to happen next. :unsure:

Jim

[Al]

Since being diagnosed in late August, I've had the opportunity to work from home thanks to an incredible office staff and amazing support of co-workers. However, I've come to the realization that I won't be able to keep up with the time and stress demands required. I'm looking at disability retirement through my profession and have the full support of my doctors. At age 55, quality of life and continued improved health are the priority. Fortunately, my circumstances lend themselves to this possibility so long as I plan carefully! The tough part is the uncertainty of WG. Just when you think you have life all planned out, things change! So I've accepted this disease as a part of my life and have plenty of hope for a productive future.

Thanks for all the discussion topics -- it's really good for me!!

KB

Welcome, Kathy! I hope you feel that you can tell your story here. (You'll notice that we aren't particularly shy!) Your contributions are good for us too!

Your comment about disability reminds me that a have a real peeve in terms of this thread: Many of us can still work, need to work, and desperately want to work. It's just that the old full-time job is too much, given the unpredictable nature of the disease, the medications, and the complications of both. Yet, one cannot qualify for disability while working part-time. This makes no sense to me, economically or any other way.

I love your attitude--your acceptance that some doors were slammed in your face, but that there are others to open.

Al