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Living with Psoriatic Arthritis (PsA)

What about work?


#26

Yes. My book on him was published a couple of weeks ago too! (Note shameless plug)


#27

Totally agree :sunglasses:


#28

Important question, coming to grips with it at the moment, fractures, visits to hospital and sick leave so far in the last couple of ears may well cost me my job altogether, as company contract allows for a certain number of months sick leave every two years. Am about to grapple with documentation necessary to apply to Italian nhs for disability status, which if granted would allow me three days a month to use for tests, visits etc, as well as permission to retire earlier. It is not easy to be granted this status w psa, will have to see if poss by adding up cancer and a few other mishaps. Was living free lance for a long period as interpreter translator teacher for companies, universities et al, and returning to that life might not be a despicable idea if worse came to worse.


#29

I know it varies by country, (but can be done in most in one form or another) If one does free lance work (even uni teaching as an adjunct) you can set it up as an independent company (not an individual) that is supplying the services. In the USA payment comes to the company as a 1099 not earned income so that you can control your income (drawing low salary) You then can expense many things such as internet, cars, utilities office space etc. In the USA I operate as an S-Corp so am not even subject to self employment tax. My "employer is a great guy who even pays my Health insurance premium and pays 2:1 for may HSA to cover deductible, co-pays vision, OTC things, non-covered adaptive aids and dental. A good accountant/tax attorney is a good investment…


#30

What TNTlamb said - I do almost exactly the same in Australia, and it works very well for me so far.


#31

@tntlamb and at @Jen75 in the UK they’ve just closed that loophole from an income tax point of view which has hit a lot of contractors to companies hard. My employers love to use contractors as such people get no employee benefits and notice periods for firing them is only a couple of weeks instead of at least 3 months and they’re not entitled to any redundancy etc so a huge benefit to the employer. They lost a lot of really excellent people doing this due the closing of that income tax loophole. It basically means such contractors can’t control their income for tax purposes anymore through such a shelf company.


#32

Be more shameless and let us know the name of the book as I’d love to read it and I still remember your video of you singing one of his songs which was sublime.


#33

You’re so right the present benefit system is such a nightmare, it’s totally bonkers. Did you see a group of 3 or 4 people have just won the right to judicially review the new system?


#34

The only reason I’m working full time is because I have a medical accommodation to telework up to 5 days/week.


#36

Shameless indeed! Amazon???


#37

Yes, I saw that about the court case. And it’s right that they should have won. I believe they were complaining about the way in which people who are paid four-weekly by their employer are penalised by the benefits system because on the occasions where they are paid twice in a month, they are deemed to be earning too much money for any benefit at all.

It’s ridiculous. It shouldn’t be WHEN you are paid, it should be down to how much you earn on a weekly basis. The same would be true if I did some ad-hoc research work at the uni, for which I would get paid once I had finished the job. If I got a payment for, say, £600, it wouldn’t be viewed as earnings of £60 a week for the ten weeks it had taken me to do the work (and, as permitted work, I wouldn’t lose any benefits) - it would be £600 for the month in which I get paid (in which case I would lose most of my benefit for that month).


#38

Yes, it sucks doesn’t it. They do that here too for direct employment contracts, but then attempt to even it out at the end of the tax year (though there are lots of little benefits - like cheaper pharmaceuticals which are through our government- that never get addressed).

A thought - many employers will be flexible within their own parameters. To use the example you’ve given above, the thing they need is not to pay you anything till you’ve completed the job, and the thing that you need is to be paid in small weekly instalments. So could you ask them about getting paid in ten weekly instalments of £60, only commencing once you’ve completed the job?


#39

That would be ideal, but the bigger the employer, the more difficult it would be to get them to do something like that - and get it right. It could be “fiddled” at department level in all likelihood, but it shouldn’t need to be simply because the benefits system “sucks” as you so aptly describe!


#40

Mentioned above is the comment:

… repealed Obamacare and we are back to no coverage for pre-existing conditions.

I have worked in health insurance in America for 25 years and the above is a largely incorrect statement. If you have had health insurance without a gap in coverage of greater than 63 consective days you have full coverage should you change plans, by law there is no pre-exisiting condition clause.

If you’ve been without health insurance for more than 63 consective days and you’re not signing onto a group/employer-sponsored plans, you may have issues for the first year, after the first year on the plan your premiums would revert to the standard amount without pre-exisiting clause.

Please feel free to PM me with questions about this or any other insurance or prescription insurance topic.

azurelle


#41

They’ve only won the right to have the judicial review, they haven’t yet won the review. But the judicial review court case will get media attention so watch that space.


#42

I’m still working. I am an analyst for the most part, but occasionally I have to travel and that is hard on me. I work 40 hours a week… I find driving to and from work, which is about an hour each way, more taxing than anything. I recently did have a boss that made the HR people let me work from home on bad days. I get more work done at home than I do the office.

My PSA is pretty bad. My feet. legs, and back hurt constantly. I have to take 5 mg oxycodone most days when I get to work at 6:30 so I can get started.

I have recently been in terrible pain, my feet and legs are really a problem. I was thinking yesterday if I am doing more harm pushing through the daily pain than good. I could take disability if I needed, but I am afraid sitting around the house would make me worse.

I have several new bosses now, if they increase my travel much I will probably go for disability, traveling is just so hard on me. When I travel it is usually for a week at a time, local in state, but I have to drive.

If I take disability I can make no income and keep the disability, so that limits being able to work any.

My doctor and I are going to have to have a long talk in a few weeks, I am just not doing as well as I feel I could be. I am on my second biologic, Enbrel, then Cosentyx, and neither have made my life better. If I could find a med that would give me just 50% relief things would be great.

Last night I was obsessing about the fact that no one I know seems to give a flying F$#K that I am in terrible pain 24/7. Not even the wife. I essentially have no support system, just me. It would be nice if the wife would just ask occasionally how I feel. She has to have a knee replaced soon, I hope she is not expecting much sympathy from me, but she will get it…

Sorry, just having one of those days.


#43

Hey, currently in my situation I am not working. On good days and can get around but productivity starting taking a hit a year ago. I need to get back or least as close to normal as possible for work to happen. Unfortunately I do not believe this is in the cards for me at this time. To put it another way just awaking and getting a shower is an accomplishment. On good days after taking medication I might have a couple of hours but none of the stuff I do is intensive. The other part of the disease where not many talk about is the mental aspects of psa. Sometimes my brain will not work. Mental fog and bad focus is a symptom that is hard to get past. I find it best if you do not fight it and learn to work with it and adjust personal expectations. For others like a significant other this can be hard to understand and it does take its toll on relationships. Finances on top of the disease and those around you makes for hard times.


#44

@darinfan Your reaction to not working reminded me of mine when I quit work. I am so grateful to be able to be retired and not working. It is much easier than going into work every day. But, it was a struggle to accept a new position in society. While I can’t say that I felt guilty, for the first two years I felt like I didn’t have a place in the world and that I was useless.

While I don’t want to return to work, I’ve continued to look for ways to be of service. I used to love to facilitate groups and I’ve done some of that. Now, I can’t do that. Too difficult, given other illnesses I have: Spasmodic Dysphonia that affects the voice and hearing loss from a nasty virus that destroyed cilia in both inner ears. (Botox injections and hearings aid, respectively, help with these problems.)

Most recently I’ve been brushing up my piano playing. In about two years I hope to pass an audition in order to play the grand piano in the lobby of the hospital for an hour a week. I love making music and soothing others (and myself), though I don’t know in the long term that this will work for me, as my hands hurt from playing. For now it feels like a worthwhile goal.


#45

I like the sound of that Laura, I hope it happens for you.

I’d like to see wandering minstrels in hospitals, they could adjust the volume depending on where they are in the building. And dancers too, snaking around the corridors. I guess there are times when that could be massively inappropriate … maybe just outpatients(?). There again, maybe my imaginings just show how pathologically bored I get at hospital appointments. You tinkling the ivories would cheer me up!


#46

They (wandering minstrels). are common here. There is another group called the Chalice of Repose that are all harp players. They only play in private and there sole purpose is to relax the dying to make passing easier.

Funny story sort of. The night I had my stroke and finally was cleared to be moved to the ICU, there was a slight mix-up in the transport elevators. The door opened and who was there but “Digger Burgess” and his gurney Digger is the contract first call man for every mortuary in town… anyway after a good laugh the finally got me to my bed wired up etc the chaplain showed up to make sure I was at peace with my DNR orders. ( I was and still am) he no sooner left than the second mix up of the night. Who should show up but the Chalice of Repose team and their damn harps. They didn’t stay long.

But I love the piano music in the atrium. We have one of gal ( she is old - 88) who when she thinks she can get away with it plays a mean boogie woogie.

Good luck to you Laura hope it happens. It’s an incredible ministry.