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Living with Psoriatic Arthritis (PsA)

When thinking about disability

#1

I am getting to a point with the diseases I am thinking about taking disability. I have decided that working through all the pain and discomfort is getting to a point it is just not worth it. Financially, it would mean a reduction in income, but my wife and I could get by.

I guess the question is, when do you throw in the towel?

I worry that being home all the time would cause me to sit around and I know that will make things worse. I think I would feel guilty because I would know if I had to I could struggle through working. But at 61, I just feel like I don’t want to spend the rest of my life, or at least the next 6 years before retirement, hurting and struggling every day.

Every time I bring up possibly having to take disability, my wife rolls her eyes. I feel like she thinks I am making up all the pain and trouble I have.

I have a desk job, so that is good. But, getting up at 5:00AM every day and spending 30 to 50 minutes in traffic takes a lot out of me. By the time I get home in the evening I fall into my chair and that is where I stay until 5:00 AM the next morning and I do it all over again. Monday morning when the alarm went off I wanted to curl up into ball and pull the cover over my had. It has gotten to me having to spend 10 minutes every morning convincing myself I can do one more day.

How do you justify taking disability in your own mind and forgot how other people will feel about you doing it, or judge you?

Help!

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#2

Well to be blunt unless you have disability insurance, going on SSDI, its a matter of learning to live on less than 900.00/month, when you can do that its time. HOWEVER you can earn up to $1,220 per month now without effecting those payments. You might be best to start with Voc Rehab to find you or train you for a job that you can do either in the meantime or as a supplement. They in most states offer some kind of income for trying…

BUT if you are considering it apply today, it can take a year or more to get approved and you may not WANT a quick approval. Heres why:

Unless you can get insurance through your wife there is a 24 month waiting period to get medicare, You can buy it, but its expensive especially when you add a supplement and part D for drugs. It can chew up every dime of your disability unless you and your wife’s income is less that 15k a year and you can get miedicaid. othewise you have no health coverge. The thing is and this is important that waiting period STARTS the day you apply for SSDI so if you work up to 93 months while waiting that time counts.

None of my business but what kind of work do you do if you don’t mind. I may have some ideas (or atleast some of us might) I get where you are at. Its a bugger. I’m no expert but I suggest you find one. Voc Rehab is helpful as well as many other agencies and independent living centers.

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#3

My situation is different. I was originally home after my kids were born, and working online. When my son wasn’t even a year old, I had my first flare, and it definitely changed the thought that I would return to full time work. I’ve been working part time all along, and I schedule myself more or less.

I make decent money for part time, and my husband has family health insurance. Since he’s a teacher, we’ll have retiree insurance when he retires, so we’ll have to contribute more. He just has to hold out seven more years.

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#4

Thanks.

I do have LTD insurance and it pays more the SSDI. They would make me apply for SSDI, but they pay the difference util I retire. MY SSDI would be significantly more than $900 a month, but less that the LTD insurance. I can get on my wife’s insurance, so I am good there.

I’m not sure what kind of battle I would have with the disability insurance company, but my doctor seems to think it wouldn’t be much.

"For lack of a better description my job is data analysis primarily. I do get to sit 90% of the time, but I do have to travel up to 10 weeks a year. The travel is hard, but it has been reduced thanks to my boss. I do a lot of auditing now.

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#5

Then you are in great shape, why wait??? TG for the travel reduction

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#6

Hey Tamac,
Having been down this route myself, I’d be saying your Dr is VERY optimistic.
To say these insurers can be complete and utter $%#@^&%@ is a HUGE understatement. They can try to make the whole process so difficult that you just give up, and that’s what they want you to do. They will try every way possible not to pay, from sending private investigators to sit outside your house to watching your every move, even speaking to neighbours. I say all of this as this is exactly what they did to me.

Initially I tried to do all of their paperwork myself. First application was rejected as the paperwork was not all in order. Then they sent me to every which (witch) dr they could think of. I had already exhausted every option open to me, seen ever dr I could, before I even started this process. So they got no joy out of that process but still the persisted in making it SO difficult. They stretched the whole thing out for as long as possible and in the end I got myself a lawyer to deal with the company. My policy came in 2 parts, income protection and Total permanent disability cover. They did pay my IP portion for 2 yrs (80% of my pre condition income)but tried to undercut my payment, saying they only paid contracted hours and not actual hours worked (I was working double my contract hours), but my premium was a % of my pay which included ALL hours. So they got told to pay the full amount, which eventually, reluctantly, they did. But the TPD payout was extremely difficult to obtain, hence the lawyer. GET YOURSELF A LAWYER, someone who knows insurance law. It will cost you $$$$ but it may well save your sanity. My lawyer was on a ‘no win, no fee’ basis and it took a while to get it, but I needed to see 2 dr’s and everything else was handled by the lawyer.
If you do decide to go down this path I would STRONGLY recommend you do not try to do it all on your own. GET YOURSELF A LAWYER.

Merl from the Moderator Support Team

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#7

Thank. Mine is through Metlife. Doc seems to think SSDI is a no brainer. I have a meeting with him in a month or so. But I got the LTD in case it took years to get the SSDI. The LTD makes me apply for SSDI, but they pay the difference in the insurance and the SSDI. They will even pay for the lawyer for SSDI.

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#8

Ohh, Metlife. Mine too was with Metlife and as I say ‘to say they were difficult is a massive understatement’. When I queried the amount I was receiving for my IP policy the assessor stated “You are getting what you are getting (The underpayment) and THAT’S ALL YOU ARE GOING TO GET!!!..” I blasted her for that statement, If I’d been underpaying my premiums they wouldn’t accept that, but I was supposed to accept an underpayment of my policy. No way.
You state ‘They will even pay for the lawyer for SSDI.’ and that is good, but it’s only to make sure they get out of paying as much as possible. Please make sure you get independent legal advice as well, just to cover yourself. After my experience with this company I wouldn’t trust them as far as I could kick them (and that ain’t very far). ‘Difficult’ doesn’t come close to explaining it, if they could slime their way out paying in anyway they would. Like I say they had investigators watching my home and speaking to neighbours. Really intrusive. So please, be aware. They can come across as if butter wouldn’t melt in their mouths but the reality is FAR different.
Well that’s my personal experience

Merl from the Moderator Support Team

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#9

I figure it will be like SSDI. File, turn you down, hire a lawyer. We went for 20 years with no LTD, so when they offered it, I had to take it just in case.

They will also deduct any money I get if I retire, which I won’t for a few years, at least until I get on SSDI, if I have to go this route.

I’ll just have to struggle through more meds to see if they work.

I don;t want to go on disability, but my dat consist of waking up at 5:00AM, spending 30 minutes convincing myself I can go to work one more day. Getting to work and into work. Then coming home and collapsing in a chair, then starting over again at 5:00 AM

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#10

If it’s a MetLife issue before yo involve an attorney try your star insurance commissioner. Costs nothing and insurance companies usually rol over pretty quickly…

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#11

“I don;t want to go on disability…” show me some who does want to and I’ll show you someone who probably shouldn’t. A line I just LOVE (NOT). “Ohh I’d love to retire at your age…” retirement is a choice, this ain’t my choice “…I’d love to have all that free time…” Yea it’s great for the first month, then what?? Days, weeks, months, years of free time gets real old real quick. The first month was OK, the 2nd month was a drag, but now it’s been years and I HATE IT. Prior to surgery my plan was to get back to work ASAP and I pushed myself to do so, I did return to work but too soon and did myself more harm than good, so that didn’t work to my plan. As the old saying goes “When you’ve got the time, you’ve got no money and when you’ve got the money you’ve got no time” You never can win.
At some point I had to recognise that I was flogging a dead horse (The dead horse being me). It actually wasn’t me who recognised it at all, it was my wife who told me “STOP”, she could see what I was doing to myself and although I agreed with her it was a real battle with myself to accept it. Still today, I beat myself up about it all. I try to convince myself I could return and sure I could today but come tomorrow I’d be laid up in bed in agony. That ‘STOP’ line had to be drawn and SHE drew it for me. I don’t blame her, not at all. I just couldn’t see the long term effect myself.
When you get to that point, you will know. It may take others identifying it for you, but if you honestly look at it all, you will know.

Merl from the Moderator Support Team

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#12

I want to thank everyone for the feedback. Doc sent me an email today and told me to finish the Cosentyx I have and I will start Humira in about 3 weeks. I cross my fingers and pray it will help and quickly.

Hopefully with warmer weather coming I will feel better. I guess it will be 3 to 6 months to see if Humira will work.

I’ll keep pushing forward and working as much as I can. I guess before I move forward to disability I will have to be at the point I just can’t work anymore due to pain and stiffness. One of my biggest issues other than the pain and stiffness is the fatigue.

When Friday comes and I go to bed I sleep 12 to 13 hours, and the same Saturday nights. But come the weekdays and work I am lucky to get 6 hours of sleep, usually 5. It adds up by Thursday and I am dragging, that is usually when I will have to work from home one day.

I’ll keep working as long as they put up with me when I need to work from home, but the LTD insurance can kick in if I lose more than 20% of my income due to missed work.

I’ll go as long as I can,t hat is all I can do until someone else tells me enough is enough.

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#13

Can u ask u something?

Do you think you have PsA in joints or in tendons? Mine is in the tendons and I’m having A HELL of a time. It’s AWEFUL. I’m 50 and think about disability all the time! But I work in a hospital and lift pts. Etc… Right now I tell my co-workers I can’t do it but v when you LOOK OK, ppl HATE to let you slide…

Anne

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#14

Big decision lad!
But I you can manage financially and, as I heard can earn some more without penalty, why not!! Life is short! You can maybe re-train to do something as hoc or part time.
Whatever you decide, best of luck with it.

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#15

Well, by definition PsA is both joints and tendons. But my tendons hurt much worse that the joints, except for one knee. I have one knee that has been cut on 4 times and the PsA hits it hard.

The enthesitis I get around my hips is so bad it gets into my SI joint and makes my low back hurt badly. I have one shoulder that is chronic with bursitis or enthesisis, it keeps me up at night.

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#16

Ugh. I just messaged Dr. I have been diagnosed only <2 yrs and have failed out of methotrexate, can’t do steroids make me crazy, the other pill one, then humira, now stelara. I’m in EXCRUCIATING pain. My trouble was that I want diagnosed by anyone 30 yrs ago. Then got thrown into pain clinic for yrs for neck pain with no diagnosis. So now, I’ve had dactylitis to prove I have PsA and I’m WAY FAR gone. My neck, lower back, what I thought was my hip was actually IT band, bilateral plantar fasciitis with spurs, my hands, my shoulders, elbows… Everything… Every tendon. :persevere::cry::cry::cry:. Torodol barely helps

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#17

I have Sjogren’s and psoriatic arthritis. I have had success with LDN Low dose naletrexon. I am on 3.5 mg for about 2 years and have found amazing relief. It is a prescription made in a compound lab (not covered by insurance). Read up on it and give it a try.

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#18

Have you checked with your employer about tele-commuting? In this day in age there is really NO reason why most of us commute to a job that can be done at a desk on a computer. Truly. I can’t get my company do let me do it now but there was a time that I was required to stay home. I accomplished more in 6 hrs a day working via laptop and VPN (virtual primary network) than I ever did at work for 8 hrs. Plus my company reaped the benefits of me feeling much better!

All this to say that only you know when it is time. I feel your pain, literally, and applaud you for looking at this seriously. As for the spouse…I don’t know what to tell you on that front. Mine doesn’t get it either.

hugs to you

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#19

Not sure why you think SSDI is only $900/month since it’s based on your previous work history and the amount you’ve paid. You must be thinking of SSI? My SSDI is $2100/month if I applied and won today.

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#20

Why do I think that? Average SSDI is right around 1200.00 (about 20% less than retirement) from that payment will be deducted 437.00 for Part A medicare another 135.50 for part B Then you have 1300.00/year deductible for part A and another 4135.00 for part B. Medications are totally out of pocket. Your 2200/month is now less than1600.0o and you haven’t paid any deductibles or co-pays (about 20%) and you have purchased no medications. AND I haven’t even considered the 5-10K that will come out of your back pay for any attorney you have involved…

So now you buy a part D plan about 60.00 now you are at 1540, but your out of pocket costs for medication is about 6300.00 or more per year (there is no stop loss on tier 4 drugs such as Biologics) Now your disability payment is reduced to 1015.00 to buy housing food and all other living expenses and you haven’t put anything aside for deductibles, copays, or prescription copays. YOU are above average.

Oh then there is that nasty little waiting period for medicare where you are on your own for insurance which you can’t buy for less than medicacer and generally a whole lot more with extreme deductible (5 - 10 thousand)

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