My name is Toni. I am 51 soon to be 52. I have had PSA since 2004 but misdiagnosed briefly with OA in 2012 by a rheumatologist but my nurse practitioner didn't accept the new diagnosis and three month ago was re-diagnosed with PSA by a different rheumatologist.
I have worked for 30 years fulltime. In fact, for the past 6 years I have held down three jobs. Teaching online for two universities and the other is for state government.
For the past eight years I had a very understanding boss who let me telecommute except for meetings, so 90% telecommuting. On real bad days I'd be lying down answering emails and taking calls. My new boss (as of next Wednesday) doesn't believe in telecommuting, without it I cannot do my job, and honestly I wasn't as productive at my state job as I once was due to PSA. I used to be an exceeds expectations now I am "meets expectations" or possibly "does not meet" in some categories. I don't have the energy and the pain gets the better of me more now than it did.
I am considering applying for medical retirement from the state, keeping my teaching jobs (thank goodness for Dragon Naturally Speaking) and finding a bit more work from home opportunities.
I noticed from your profile you didn't mention you had ever taken a biologic for PsA. Did your doctor never suggest one? I think you'd be eligible, having had PsA so many years already. :-)
My doctor has discussed biologics but I have diabetes, asthma, and diabetic neuropathy in my feet so it would be a last resort. Thank you for your reply.
You're welcome. So sorry to hear you have diabetes and asthma, too. I don't know anything about the interaction between diabetes and biologics. I have asthma, but not severe. I had neuropathy in my feet, which seemed to be worse when I ate sweets-especially ice cream-but maybe that was just coincidence. My doctor prescribed Nortriptyline 10 to 20mg, which finally stopped the neuropathy. Before that I used ice packs, which seemed to stop the neuropathy temporarily enough so I could get to sleep at night. But I suppose being a diabetic it's not safe to apply ice packs to your feet due to poor circulation? I hope you can find the work at home opportunities--I think keeping busy is good for us--it's a distraction from the pain!
I'm near the same age as you (+2) and misdiagnosed up until 2 years ago - so snap. I work in a training role too, but in industry, so add concrete factory floors and steel cap safety boots to my list of woes. My last 2 years have been nothing short of terrible, but I am turning the corner this year with starting on Enbrel. I, like you, have an understanding management team, and I understand how wonderful it can be to have this behind you.
At the end of last year I was almost at the point of chucking in the towel and finishing work. I am the main wage earner in this family and I wouldn't qualify for a sickness pension here is Australia. It was a nightmare to jump through the hoops needed to qualify for biologic here in Australia, but Enbrel has been nothing short of life saving for me. I am not 100% yet but the changes are nothing short of miraculous.
I hope you find what works for you. I want you to know that you are definitely in the right place. I have found this site a source of solid factual information, total support and understanding.
I am hoping that you find the answers that work for you so that you can continue to beat this damned thing and continue with a life you obviously love.
This is the right place for me! Having people who understand is amazing. I was feeling depressed and alone but you all taking the time to reply to my post lifted my spirits. Thank you so much.
Hi Toni, it's great that you joined us and are already feeling the benefit of friends who share this journey. I'm the same age as you (had my 52nd birthday last month) and have likewise worked full time my entire adult life. After a long corporate career I left to pursue my passion for animals, and set up my own business in 2007/8, which PsA has now brought to a premature end. I too need something else to fill my days because, of course, all the things I would once have done to keep myself active and busy are also beyond my 'PsA' capabilities. I do believe that when one door closes another opens .... my problem is I'm impatient and I want it NOW!!!! Glad to have you here with us.
I've met some good people on here whom (or is it who) I consider good friends.....even if we're just "penpals". So, that is one good thing I got out of having PsA! Can't think of any others offhand.....haha!!!
Hello Toni,
You’ve joined a great group here, informative, supportive, and often very funny
Me too, I’ve always worked full time but since I was diagnosed several years ago I’ve had to slowly reduce my hours and currently work 27 hours a week. At the moment I can manage that and keep my head above water financially. Thankfully, all the reasonable adjustments which have been put in place were agreed before my Occupational Health Dr retired…he’s been a complete rock for me in work.
I have a new manager too, at the moment she seems supportive.
Good luck with it all x
