What about work?

General
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I’m interested in where many of you with advanced PsA stand on the area of work. I haven’t worked now for a couple of years, but with the biologics I sometimes feel as if it is time to get back out there. But it’s difficult, because even with the biologic it is difficult to be consistently well enough to be anything like reliable. There is always something happening or flaring up with what we have. If it’s not our joints, it’s something else. This puts us (or me, at least), in this weird limbo where I feel guilty for not working when I feel fine, but realise WHY I’m not working when I feel ill. I’m ok on a day to day basis, if I do little more than nip to the local shop or go to the cinema, but anything more than that and it’s not quite as easy. I went into a recording studio for a day with some friends about six months ago, when my arthritis was at its best. But it took me a week to get over it! At home we have our comfortable chairs, our raised loo seats, and we know every inch of our houses and where we can lean on something or steady ourselves. In a different environment for a long period of time (as in more than an hour or two), I’m stuffed. Tiredness and pain kicks in for a number of days afterwards. The same occurred when I went away from a few days last summer. I was ok, I thought, while I was away, but when I got pain I had a really bad flare that didn’t die down for a month.

At the moment my name is on a research grant proposal at the local uni. If it comes through (50/50 chance) then it will be three years of work - but much of it I can do from home, which makes a huge difference. But if that doesn’t come through, I feel stumped. I KNOW that a regular job is not going something I can be reliable enough for, and yet when I’m wandering around M&S I do get these guilty pangs and think “if you can do this…”

Am I the only one torn on this subject - and with the guilt trips? It reminds me of when I have been off work in the past due to mental health issues and someone from the office as seen me out somewhere. It’s that same feeling of thinking you’re a fraud.

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I work part time, and mostly make my own schedule. So I have pet care that I do daily but that’s pretty light, and I tutor a few days a week. I definitely leave time for basis and /or resting. Plus time off for surgery, PT, my daughter’s health care issues, etc.

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Yes, that makes sense. It seems that a regimented job, even part-time, isn’t going to co-exist with PsA - and that in itself is a slightly scary proposition.

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I work more hours a week now than when I worked BUT it’s on my terms and my pace. Ben’s. Friends stuff is 6 - 10 hours of my day, I’m still involved with my wife’s business several hours a day. I teach at least one class a Semester (online or practicum supervision) do some writing and editing for journals though “peer reviewed” is a stretch. It’s been a long while since I was anything close to a peer. Chores on my acreage and of course fishing when I can. Pretty much a 60 - 80 hour a week is the norm. I’m having to make some big adjustments though as my disease levels are pretty high and am in PT twice a week plus some gymn tie prepping for our summer event. That being said if I had to keep to a schedule, I’d be in front of the TV or on Facebook all day and back to 305. instead of my current 180…

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It’s the terms and pacing that is key. I sit at home writing for probably as many hours a week than I would work in a full time job, but I can spread it over seven days instead of five, and the hours I do each day can be when I want to do them - and that’s normally no more than a couple of hours before I get to put my feet up. Today I wrote between 2 and 5 in the afternoon, between 8 and 10 this evening, and then from midnight to 3am. And, of course, if I feel crap, then I don’t have to do it. It is, after all, a hobby. It’s the structured day where you have to be at a certain place at a certain time that is the issue. Writing as a profession would be ideal! Maybe one day!

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I work full time but mostly from home but that’s only because I’m in a pool of people who might be made redundant sometime, it wasn’t last year and it won’t be this year. There’s 500 of us, so it’s not a lonely place to be in. But being in that pool with this disease is a godsend frankly. My job requires brain power of the analytical variety as I make and write legally binding decisions on consumer complaints about financial service providers (for me usually insurers). But I can pace it anyhow I want - over 5 or 7 days, once I hit the weekly target of x number of decisions, So that certainly helps. However for most of November and December I was ‘off sick’ due to gastric issues (persistent horrid diarrhoea, which hospitalised me for a couple of days too) which eventually turned out to be sulfasalazine hating (we think) the Benepali being thrown in to the mix. I also had bilateral hip bursitis from August to end of December which would have made commuting virtually impossible regularly. I live in deepest Kent and my work is in Canary Wharf.

Now though I’m pretty good. I’m always amazed how fast issues with this disease turn, either negatively or positively. Stopping the sulfa was magical and finally a GP with a better aim got the steroid shot into the worst hip on target and that disappeared too. My biggest relief is that I can now walk my dog properly and astonishingly managed three and half miles on the flat with him over Christmas. It was slow but god did it feel just fabulous. Walking, especially with my dog keeps me sane.

I’ve always been off the view ‘working’ is good for the soul and just about everything else. Most of it centering on the ‘I’m making a contribution, I’m earning my own way, I’m independent of the state, I’m a useful member of society’ etc etc.’ So I would find it pyschologically just awful if I wasn’t doing something resembling ‘work’ voluntarily or otherwise. It’s what my self-esteem and self confidence are probably based on.

So Darinfan get writing as a profession! Also employers these days are finally more attuned to flexibility, technology so helps that too. Naturally I think what will I do when possibly I’m eventually made redundant, I’ll be 57 this year, so not that desirable to other employers. So possibly I’ll be 58 when the hammer does drop although my employers are probably as deranged in their management skills as PsA is, so things there turn fast too so who knows I can probably stay employed … at least the law ensures they can’t decide redundancy for this year now.

Some of the stuff I think about doing is learning how to be a freelance editor and things along that line. As presently I read and write for a living. And course I have these job alerts online and sometimes ‘drool’ over some opportunities that are out there until PsA turns nasty on me again and jolts me back to my reality. Thankfully it’s not yet broken my spirit. I point blank refuse to think I’m permanently disabled, I just have to deal with yet another blip that I’m certain can be overcome, always just certain that it can. That also keeps me saner.

I’m nearly 6 months on Benepali now and finally I know it’s working and behaving since it made me ditch sulfasalazine and apparently since it circulates, rather than attaches (like Humira and its biosimilars do) it’s more unlikely I’ll develop antibodies, hence the lack of a DMARD as well bodes better. But I’m under a pretty tight review schedule of that now. We’ll see.

But essentially I love to be working, having that structure (even if it’s more elastic) and just love to be ‘doing’ something worthwhile, earning money, being self-sufficient, paying a mortgage, saving for holidays etc etc. I guess it’s part of my DNA. And so for now that’s what I’ll keep on doing, and PsA must be kept as well behaved as possible. I can have even more temper tantrums that it can and it’s not going to win! Or least that’s my present mantra. I’ll let you know when it’s struck my heart down emotionally or at least you’ll all hear the screams whichever part of the world you’re in :rofl::joy::rofl:

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That’s me, too.
I work part-time, usually 3 7-hour days a week, which is all I could ever tolerate. The biggest difficulty is getting ready in the morning. I don’t sleep well, so I’m tired and very stiff and fighting with the idea of calling in sick! I get up early enough to take in some coffee and TV while sitting on ice.
I’m at retirement age now, and the thought of it is always on my mind! I’m worried if I do retire I’ll spend too much time doing nothing at home. Yet, I’m pretty busy with our kids and grandkids, and it would be nice to have more time to catch up on things that have been ignored as far as our house goes, do more traveling and spend some time drawing portraits again!
At work I’m so lucky to have my own office and also a seat at the front desk to assist customers when I’m needed there. My hours are somewhat flexible—I have tons of vacation and sick leave built up and I’m never denied it. It’s about the best job I could ask for, so leaving for good will be a sad day. PLUS — and this is BIG — I don’t know if I’ll be able to stay on Enbrel if I’m on Medicare.

I’m nearing a crossroad—lately I’ve been saying I’ll retire in one year, but when Fall rolls around, I might have more doubts about that.
@darinfan if you can do the writing at your own pace, that’s great! I’m sure there are some jobs that are part-time and flexible—except it’s a full-time job searching for them, applying and interviewing!
Good luck!

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Hi @Grandma_J,

Being in the UK, obviously I don’t understand much about medicare although I have seen lots about it on here too. I have a friend in the USA who worked until she was 75 (last October) as a flight attendant doing flights to London from Chicago. She has the best knowledge of London that’s ever possible to have, better than any trip advisor review, that’s for sure. She had been doing this job since I was aged 3 years after all. Naturally she suffers no disease like ours but I certainly have to hand it to her for being able to serve tea and coffee like she has done for such a long time and with a smile. And for her ability to ‘chat’ to just about anyone along with that cat like balance she has from all those years of ‘some turbulance’. (spelling?). I so envy her cat like balance which I simply don’t have. But she was employed until she was 75 and she herself decided to hang up her ‘wings’.

So just because I’m curious - is that all medical insurance of the type that would cover enbrel can only be had if one is ‘employed’ and under ‘retirement age’? Even though obviously ‘retirement age’ is now a such a moveable feast? And is that that once one is no longer ‘employed’ no medical insurance company will offer you cover? But what about if you were self-employed running your own business, or freelance but still earning, as loads of people are, especially on the winding down as they get older scenario? How and when does medicare and its more restrictive rules get slapped on you? I should have paid more attention to all the stuff about Obama care etc but I think the complexity of your medical insurance system got the better of me. I do know medicare is available if you can’t work too for whatever reason too.

Here in the UK, private medical insurance (PMI) doesn’t provide cover anyway for chronic conditions like ours but can be bought or continued once one has retired too and can last until the day the day you die. For many people like me, it’s an employment benefit,(not that it’s of any real benefit truly - although it did mean my recent hospitalisation was in a private hospital but only after a ‘fight’ from me, given PsA is so chronic and what was wrong with me was most likely connected) but if I was to leave my employers or indeed retire, I could avail of continuation cover, provided I stumped up the cost of the premiums. So for many cancers and cardiac events even, you can have PMI cover, and for all those hip replacements etc you can have PMI too. Obviously it costs in premium levels. And in Ireland where the state medical care is more reduced than our NHS, you can have PMI which does a lot more to cover the ‘chronic’ issues that might arise, which again can go on till the day you die, assuming you can afford the premiums. It was always a little ironic to us that our mother died in a state side of a hospital rather than the private wing, given she had paid for her PMI always at some considerable cost. Actually she couldn’t have had a more dignified death with just the nicest staff but it was still ironic.

I’m guessing no medical insurer will insure you or at least if so, the cost of it is simply prohibitive once you hit some sort of ‘retirement’ definition? Is that correct? But what about if one ‘spouse’ is still working, doesn’t cover extend to the other spouse anyway regardless of age, ‘retirement age’ or otherwise? I do know your husband is retired.

Anyway as I said I’m just curious. And sorry @darinfan for suddenly asking questions about medicare first thing on a Monday morning! :upside_down_face:

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Hi Poo_therapy,
I shouldn’t say I can’t get Enbrel if I’m on Medicare—it’s more like, the price would be outrageous for me…any medication is available, just at a high copay. Presently, I pay nothing for my Enbrel. The $ 25 copay is paid through the Enbrel Support program. It would be next to impossible for me (us) to afford anything more than a couple hundred dollars a month for my injections, and I’m sure it’s more than that. However, @tntlamb had put up some interesting information about this awhile ago, so I’ll need to look into it further—maybe getting Enbrel won’t be too expensive for me.
My husband retired 2 years ago, so we wouldn’t have any other private insurance.

Another potential problem is our president has repealed Obamacare and we are back to no coverage for pre-existing conditions…that could be catastrophic for a lot of people—I’m not sure how it affects people switching to Medicare, as most people in retirement age have some sort of pre-existing health condition (unless they’re from a different planet).

In retirement, I expect to pay monthly premiums of $140 for Medicare and about $200 for my supplement insurance—so between my husband and myself our monthly insurance cost will be $680. It sounds like a lot, but that provides us with really low copays for doctors, hospitals and medications (other than specialty meds like Enbrel).

You asked about people who are self-employed, etc. My SIL just started his own business January 1st. They looked into buying private health insurance. Monthly family premiums would be around $1,500 and there would be a huge deductible—possibly as much as $10,000??? That’s crazy stuff because they have 5 kids (I should say active kids) and you never know how many doctor or emergency room visits you’ll have to pay every year! Luckily, my daughter still works part-time as a nurse and receives health insurance much cheaper through her job.

Anyway, I hope this answered some of your questions! :blush:

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Hi,

I am a self employed cheese maker. We (my wife and I) only started the business 3 years ago, and naturally had big plans. Then I was diagnosed with PsA and it all changed. But… we managed. We have reduced our expectations and we are looking into reducing the frequency of cheese making but increasing the amount per batch. Previously I spent my life as an Anaesthetic Nurse Manager. I know I couldn’t do this anymore as you are at work and that is it!! Within our own business I can find time to rest, Go to physio or doctors appointments etc. We still work a lot overall, but at least I can spread it out a bit. The flip side of this is that it feels as if I’m working all the time :grinning:
That said, we have time and look after our God children a good bit.
We are in Ireland and here we have the governments drug scheme. You only pay a max of €134 / month for your drugs no matter how many or how expensive they are. Mine cost about €27,000 annually i think, so thank god for the scheme!
We also have PMI which pays for all the related issues of PsA except medication.

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It certainly did @Grandma_J thank you.

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I am also on Medicare with an Advantage plan. I am currently taking Cosentyx for my PsA.
I am eligible for free medication direct from Novartis due to a generous patient assistance program. In my case, I qualify for the program because my household of two has less than $100k in income per year.

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I’m a public defender who writes criminal appeals for a living. In Kentucky, trials are recorded. We also don’t have transcriptionists. Right now, I’m watching Court TV (a trial) and doing my own transcriptions. I have another one after this, then I will spend the next four or so weeks banging out several legal pleadings.

A lot of my PsA is centered in my c-spine, t-spine and shoulders. Banging on the computer is not particularly good for what ails me so I’m attempting to use Dragon. I’ve found I can do transcriptions but when I’m drafting pleadings, I need music.

I don’t sit at a traditional desk, but have a La-Z-Boy chair and a half with a swing-arm computer desk my husband made. I use a ton of pillows behind me and to prop my left arm (unsuccessful shoulder replacement in 2013). I also have a heating pad.

I started extended-release Sulfasalazine in November (?), along with injecting Humira (which I’ve done for six years this month). I’m doing much better than I have for the last couple of years. This time last year, I had the flu for a month and undiagnosed asthma and sleep apnea. Diagnosed and treated for asthma in February(?). I got my CPaP in March; it made a HUGE difference.
Frankly, right now, because last year was the wettest on record in Kentucky, asthma is giving me fits (I also have a nebulizer at work). I’m beginning to feel the twinge in my left shoulder which tells me I need to quit banging computer keys for a few minutes.

I work 45-50 hours a week. I’ve been doing the job for 30 years come June 1. I’m pondering retirement on 1/1 or 7/1/2020. I’ll make the decision sometime in September of this year. I’ll be covered by my retiree insurance until I reach Social Security/Medicare age (assuming they’re around when I get there and assuming President Trump doesn’t blow us all up in a fit of pique).

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Interesting @cpharada!

Our combined income will be under $100,000 too when I retire! So I should qualify for that, too! :blush:

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@Grandma_J
It sounds tough to live with all these uncertainties!

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I don’t work, I might be able to handle a little part time work if it was just the PsA, but between that, migraine and trigeminal neuralgia, the good days are few and far between :slight_smile: I’d feel sorry for any employer who had to put up with me :wink:

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Thank you for all the responses. It’s clear from them that everyone looks at it from a different angle (as you would expect), but that at the very least we all need allowances and adaptations and/or flexibility from employers for us to work effectively and reliably.

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I have always worked full time. It’s a physical job, but I can move around when needed or sit. I am a special education coordinator at a school. Before this year, I was a special education teacher that did direct intervention with families in their homes for 10 years. I was diagnosed with PSA in 2008 after 3 years of horrible back and hip pain and many different PT appts. I have permanent damage in my SI joint. I know I will never not be in pain again in my lifetime. That’s such a sad thought if I think too hard about it. My pain does migrate, but it is always in my lower back and si joint, but moves around to my hands, knees, feet, and legs. It affects my retina and my neck. And the fatigue is bad as well.

I get school breaks which I look forward to. But what I notice is that my pain increases when I am more sedentary. I hate to get up in the morning. I want nothing more than to stay in bed all day, and I can when I’m off work. But when I do that I can barely move. It also makes my depression flare up. I need to be around people and to have a routine. I enjoy my regular school breaks, like I said, but I’m always ready to go back. My kids are busy with high school sports, dance and cheer. I sometimes have to force myself to go. When I do have a bad flare up my body will tell me to rest by giving me a low grade fever. That’s when I know I’ve pushed it too far. But I won’t miss my kids’ activities.

Luckily and unluckily, my husband has rheumatoid arthritis. It’s lucky because I have someone I can vent to who understands. We support each other. We also push each other gently. It’s unlucky because it just stinks that we both have something and that we were diagnosed within 6 months of each other.

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I am an RN with 45 years experience. My last job was over 3 years ago as a telephone triage nurse. 12-16 hours a week, shifts 4-5 hours. I had to quit. Couldn’t tolerate the sitting. My psa is not well controlled and if I had pain it interfered with my thinking as did pain meds. I was forced into retirement and miss it. I am on Simponi currently, my 5th biological in 7 years. So other kinds of nursing a no go due to lowered immunity. Still looking for my volunteer niche to occupy my time. It’s difficult to still have the desire and passion to work but a body that won’t cooperate. I’m soon to be 64 and had planned to work or teach indefinitely.

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I get the sedentary thing. I do it too. 2 years ago my husband gifted me with visits to a personal trainer for my birthday. I was irritated and angry about it. But it was the best thing to happen in a long time. She has motivated me to exercise which I always hated. During bad flares she modifies my activity even if we just do slow laps. I started therapy last summer to work on depression and anger about the diasease, pain, and just not feeling good. It has helped a lot. Hang in there, there are a lot of folk on this site on your side.

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