Working with PsA

General
21

I wish there were a way to overcome the inequity....... I guess what we can take solace in is when someone DOES get their case through, there is little doubt they deserve it.

I start lecturing tomorrow, I'll be excited as I always am, and by the end of the day I will want to crawl into a hole and never come out. Fortunately these days I do more research and consulting so as I'm lying on my couch with my laptop on my belly I can get a bunch more done. (I'd much rather be teaching)

What we can do is support each other in the fact we CAN work in some fashion. I get a bit frustrated as I volunteer at the chronic pain groups in our community clinic. There are a number of those folks with damage hind quarters. no Dx, no reason. Its hard to push yourself, but that is the only way one can survive, not only disease but life.

This isn't political, but I have seen no model in our department, or published works that says we are going to have anything but a tough 8 or more years ahead of us. The work world is going to be tough, more competitive than ever. Employment laws will be strictly interpreted. (not good for us)

The other thing we need to understand is we all understand the PAIN of this disease. One of the biggest dangers in a group like this is to belittle someone elses understanding of the disease. I have no hesitation saying I have been in the place where I was seriously close to ending it. Breakthrough pain, no relief, completely wheel chair bound etc etc.

22

gads I forgot about breakthrough pain. SI ligament pain now that is nasty. Mine has calmed down again. I wish I could say I knew why and I would pass along the cure Louise.

23

I wish I could tell you, but I live in NY and rely on a lot of expensive taxis. I do often wonder about how I would cope with all of this if I still lived in L.A. and driving was imperative.

Rebel mom said:


What about driving.
pearlgirl said:

Physical therapy has helped me build the muscles around my rotator cuffs so mousing isn't as painful. I also drink a ton of water, which guarantees I will be up and headed to the bathroom at least 1x every 1-2 hours for stretching. Set your alarm every 30 minutes to ensure you standup. Even if you sit right down again, it's still worth it. I also was able to change job positions so I'm not sitting all day typing, now I do a lot of presenting, which holds its own set of problems in terms of energy. It's far more interesting and engaging though.

Good luck!

24

One other thing I forgot to mention, if it's possible, my advice would be to try and work for a larger company that values it's reputation as a leader in human resources. They will go out of their way to help accomodate you and in doing so, protect their reputation. I know we don't all have this option, but I've heard countless stories of people working at Starbucks for the health insurance. Even if it's a lower paying job, being secure in a company that will support you is definitely worth it. I took a sizable pay cut to be in my current job, but it's worth it for the benefits alone.

25

I quite agree pearlgirl, about working for a large company, it can certainly help…I work for the NHS and although in the ‘caring profession’ I was given a written warning for being sick those 4 months before meds started working (previously had not been off sick for about 3 years) but I had the backing of the unions, appealed and my employer had no choice but to withdraw the warning as we proved they were not following their own sickness managment policy nor equality and diversity policy.
Jot1 SI pain is a bitch, luckily I don’t suffer it full time but have flares which agrivate it, its been biting me on and off for a few weeks now so I knew it was coming and yesterday while walking down the ward at work I lifted my right foot for the next step and wham! I will just do what I do and it will ease eventually. One of my collegues yesterday nearly made me cry with his thoughtful attitude, he tried to do all the bending, stretching, moving required to run my bays as the thought it would help me. I had to explain in a careful manner that those are the movements that help keep me mobile throughout the day…but what a sweetie! There’s some lovely people out there :slight_smile:

26

Re the driving....... A pair of well fit arthritis gloves may help. When I first started driving power steering was unheard of and steering wheels were huge. Driving gloves were a near necessity..... driving was work......

27

After reading through this discussion, i feel very lucky. I am able to work from home doing the bookwork for my hubby’s company. I’m not on a schedule and can completely work around how my joints are feeling.

I used to work in a call center doing tech support & training new hires. I loved my job, but 12 hour shifts (2 days, 2 nights, 4 off) were brutal. When the psa decided to get into my spine and si joints i couldn’t stand or sit for longer than a few minutes and had to go on LOA. I went back at a reduced schedule (4 hours a day) but eventually ended up quitting due to the constant harrassment from the HR department (they wanted medical information that my doctor wasn’t willing to provide). I loved the teaching aspect of my job, i had an assistant and could sit or stand or roam around the classroom. It was nice not to be tethered to a desk and pacing was what was most comfortable if i couldn’t recline. I miss being in the “real” work force, but what i do now works well for my psa.

28

i work and its not easy but it is doable. I make sure to take my pain meds before i start and again at lunch. A good thing about my job is that every day is different so if my wrists hurt, i take a break from typing and go do something else. I am able to walk around for some things so mostly i alternate between tasks depending on how i feel. for my shoulders, i try to be careful with my posture and it has made a difference.

the thing that helps me the most is that i work in health care and see patients everyday. Its hard to complain or feel like quitting when i have patients coming to me with cancer or diseases that are killing them. As bad as it is, there are many many people who have it worse.

29

You said it! Seeing people with life threatning conditions and youngsters coping with chronic illness is an eye opener, and makes you feel lucky…and I bet you have a lot of empathy with those you see and they’ll appreiciate that :slight_smile:

30

I used to be a preschool teacher and I can no longer get down on the floor and sit in those tiny chairs. I had to quit due to felt I was a hinderous to the program. I am miserable but more miserable at home not being about to do things for myself. I am waiting for approval for the bio drugs. Does anyone know how long the approval process takes? And what is SI pain? Does these drugs work for that as well.

Love this site!

31

Can’t answer some of your queries as I’m in the uk but SI pain is the inflammation of your Sacralilliac joint (not sure that spellings right) Its where your spine and pelvis meet and its besically held together by tendons. Some of the pain can be in the top of the buttock area but it can also be transferred pain and can radiate to your legs and groin area. Mine is on either one or both sides of my spine and although it throbs itswhen I lift my legs it really hurts with a stabbing pain. MTX and meloxicam does help my general condition but as I’m in a small flare its back, unfortunately my pain med helps the throb but not the stabbing pain at the moment.

32

Its Sacroiliac joint…just looked it up lol

33

Thanks Louise, I started to get pain like you described. I’m bringing it to my drs attention tomorrow so I can now describe it better.

34

SI piain can also be the sacroiliac ligament at the insertion point. This is what the docs mean by enthesitis.

35

I received Social Security Disability when I was 45 because of PsA. I am able to work part time, thank heavens, or I would never be able to afford my meds. Finances are hard without a full paycheck, and SS Disability is not a living. It's a supplement at best. The good thing that comes out of it is Medicare. I tried to buy health insurance--had an insurance broker (different from an agent) search it for me. No one would even write me. Automatic deny with PsA.

Even working part-time is a struggle. I envy those who are able to push through it and continue to work. My GP and rheumy both have told me full-time employment is out of the question. Alas, I really already knew that.

The things that work for me so that I can work part-time: Good, supportive shoes that help not only my feet, but also my knees and back. I've learned to drive, without pivoting my driver's foot, to reduce strain on my knees. (I know that's not the best way to drive, but you do what you have to.) I carry my books and papers (teacher) in a rolling case so that I'm not stressing my shoulders and back. (Using a shoulder bag, oddly enough, is VERY hard on my hands and wrists when I am hoisting it on and off my shoulder.) I park as close to the building as possible. I sit as much as I can. Standing hurts everything. It's funny, but walking doesn't hurt half as much as standing still. Larger-diameter pens seem to be easier to hold and write with than smaller ones. Silver ring splints help support my fingers. Sometimes I wear a tens unit for my back and SI area. I wrap swollen ankles with ACE bandages and hide them with my socks. And, of course, I use DMARDs and pain meds as needed. Tramadol doesn't seem to make me as drowsy as hydrocodone so I try to stick with Tramadol, but most days it isn't enough. Like xvanex said, moving around and good posture helps a great deal. I'm also on a first-name basis with a good physical therapist, who does wonders!

By teaching part time, I have the flexibility to do my outside-of-the-classroom work when I feel good enough to do it. It's called a 20-hour a week job and I''m only on campus less than six hours a week. That has probably made the difference between working part-time and not working at all.

I wish you the best and hope you find a way to make life easier while you try to work. I remember how miserable I was when I was trying to work full-time. Part-time is tough, but at least it's bearable. When I was a full-timer, I felt so bad I cried every day coming home from work, and began to question if I even wanted to go on. It's not a good way to live. When I told this to my rheumy, she said she hears that every day. At least I knew I was not the only one feeling that way. I didn't feel so isolated after her comment, like maybe I was having normal reactions to my illness.

Hang in there, and remember, it is your life. Do what you have to do for you.

36

This is an old thread but I am going to comment again. I posted earlier about disability. In January 2013 I reached a point where I could no longer work. I filed for SSDI. It is almost 5 months to the day since my application, today I was approved. I was not sent to any doctor or psychologist by Social Security. My medical records were complete and show my entire history of PsA. Whew, what a relief!

Yes - Do what youb have to do for you - Byrd Feeder is absolutely correct.

37

Congratulations Debbie!

38

h2owear.com makes a great zip all the way up the front swimsuit (I have it). They also have a full zip up the side swim brief and tankini top.

Rebel mom said:

Swimming I love but cannot put a suit on due to my shoulders and wrist. Walking slowly is all I do.
39

I've got the systemic symmetrical kind of PsA. It's VERY similar to RA, except I have less joint deformity. I've had to quit every job I've had due to flares.

I'm just coming off a whole year of exercising twice a week, and it did nothing except make me flare every time I exercised. Even the "gentle waves" warm water exercise. Everyone is different.


debbie said:

I would disagree.

Per the wikipedia definition: Symmetric Psoriatic Arthritis: This type accounts for around 25% of cases, and affects joints on both sides of the body simultaneously. This type is most similar to rheumatoid arthritis and is disabling in around 50% of all cases.

40

Best wishes Debbie, I hope you can get disability! My husband is a very athletic guy, who is a software engineer, and at 40 he is starting to get hand pain once in awhile. I can't imagine with PsA. Gentle hugs to you.