I currently have a job that I am doing part time but want to return to full time status.. my docs think Im nuts but I think I need to do this.. hopefully my employer is able to accommodate my limitations but if they cant I may not be able to do my job. And that scares me. Do any of you work FT outside the home? How do you cope with the pain plus the job? (plus a family of three daughters, 8,9 and 13)
Hiya Sarah,
I've been in the trades and construction my whole life and since 2008 have been the Foreman of Trades at Curry College in Boston. There are 46 buildings and 126 acres that I have to make sure are maintained well. I didn't get diagnosed until Oct. of this year and I've slowed down a bit. I'm expected to walk hundreds of steps each day but do the best I can.
Most of the folks I work with know that I'm normally very high energy and that i'm fighting through it. I missed some time from it but the Humira helps take the edge off. They're pretty cool about it and are interested in my getting this under control. I had an appt.with my rhuemie yesterday and twice she said."so you're working?" I said "Thankfully, yes". She's putting me on Remicade but told me the red tape should take about 6 weeks.
You know, you asked how to cope with the pain at work. Of course, some job requirements are gonna be more physical than others but my joints ache even when I'm in a Netflix coma in my LaZBoy so at least at work my mind is occupied and it's actually a nice diversion. As far as your daughters.... that must be a toughie! I'm fortunate that my two boys are in their 20's and my daughter's 17 so the most exercise I exert with them is reaching for my wallet. :0)
I hope the best for you whatever you choose to do...
Yes i am curious also about how many of you work and dont work. How difficult was it to get Long Term Disability with PSA? and if your Rheumy supports you? I have been on Disability for 3 yrs now and am currently on a clinciaial on Cimzia
Ooops sorry…on a clinical trial for Cimzia that my Rheumy recommended. Every time i go lately he always starts off with “oh well you are doing much better aren’t you” I say no not really…my swelling is better for sure but nothing else is. I feel that he maybe is saying this as it is a clinical trial he is involved with and recruits for? When i took him my forms to update for disability he says well you are doing better now. I dont feel he is listening to me. I have PSA, Sjogren’s Syndrome and Fibro he says… If they dont approve my new forms i will be forced to return to work and am really scared! I dont know how i would manage it physically, and mentally. It is a very stressful job with lots of deadlines and responsibility. Working at a hospital running childrens clinics. Would like to hear others experiences with working and disability.
It hasn't been that long since I was diagnosed with PsA and I have it mainly in one hand. I work outside my home and in addition work outside in all conditions, all times of the year. I have to use and carry equipment and I find some days my hand really acts up. Especially in the colder weather. I am afraid that I will have to speak to my employer about the issue as it becomes more of a disability.
Maybe I should do it now...maybe I'm making it worse by keeping this up. I don't know. Many days I need my son to help me carry grocery bags because my hand cannot grip the handle well enough. I mostly would still carry lighter bags. I'm not a type to complain or ask for help unless I really have to. I've had to learn to do that now.
I don't know what I'm going to do about work. It's my only income. I can't survive without that job.
I just got diagnosed this past November, although it is apparent that I have had this for the last 20 years, maybe more. I work full time as a Cardiac Care Tech, and I am on my feet almost always, AND I work 12 hour shifts. Shewwww!
I find that if I do sit down for any period of time, I have a very hard time getting up and moving. Before I was diagnosed, it had gotten so bad that I would stand up on my breaks,moving around, because it hurt to much to try to get up from sitting down. Don't even ask about going to the bathroom!! At least at work there are handicap bathrooms, that are higher, and have railings. If not for those, well.........
Long story short....I had been going through an endless cycle of work, going home and not being able to move, knees badly swollen, go to bed, try to sleep, wake up and repeat. I should say that I only work 3 days a week, so sometimes it worked out that I had extended days off, or at least 2 to 3 at a time. Not sure that I would have lasted as long if not for that reason! Every once in a while I would be scheduled for 3 in a row, and let me tell you, those about killed me!!
I was really worried about losing my job due to my previous absences over a year period, that caused me to get to the write up status. Like most workplaces, you are only allowed a certain amount of days you can miss in a year period. This is not to say I miss a lot of work. I fell in nasty weather at one point and hurt my back really bad....multiple days off. I got a bad virus.......days off. And so on and so forth. Then enter the PsA acceleration. I worked some days that I don't even know how I was able to walk. My knees were so swollen that I couldn't even bend them! I knew that I should look into FMLA, just to make sure I didn't lose my job. I had an appointment with our HR department, they gave me the paperwork to have my doctor fill out , which he did. I didn't even really think about using it until a couple weeks ago, when I realized that I was going through this never ending cycle that if not broken, would disable me for good. I knew I had a bad flare coming on, this may sound weird, but my face gets flushed and feels hot. Usually after that happens, I start having major issues.
I have not worked for the last few weeks. Had an appointment with my doctor this past Wednesday. He upped my MTX to 8 (I had been taking 5 a week), starting out by adding 1 extra each week until I get to 8. He gave me a script for Medrol to take immediately, and also to be able to be refilled if I have another flare in order to stop it before it gets so bad again. He also gave me another script for Dilaudid, (the only pain med that has ever seemed to work for me in the past), but gave me a stronger dose, since the one I had wasn't doing me any good at all. I should tell you that I mainly take those for achy night time legs, I never take them when I am working.
Finally, he told me to take this course of Medrol before returning to work. I have only missed a total of 7 days, since I am lucky enough to only be scheduled 3 days a week. The last day I worked was Dec 26th. I feel so fortunate to have a job I love, the schedule I have, and awesome managers and co-workers that are understanding and caring. Those of you who have this know how hard it is to work with symptoms. Not having to worry whether or not I will lose my job, is the most comforting thing to me right now! I try not to think about the day that will come when I can't work at all. I am 54 and feeling every bit of it now...........
I've had the same job for 23.5 years, so I'm lucky that way. I've been diagnosed since August of last year, although I think I've probably had this stuff since 2006. My supervisor and division director were pretty decent with the amount of time I had to take off last year. And what lack of patience I've felt has been because of my own cranial-anal inversion the last six months of last year.
In my evaluation last week, my supervisor and I had a long discussion about that. When examining my workload points (a "very productive" year for an appellate attorney like me is 24), it was obvious that I began to struggle in about April and really didn't quit struggling until I took time off during the Christmas holidays. We both agreed it was a failure on both our parts not to do something sooner--for her not to confront me and for me because I could tell waht was going on but I didn't quite have an idea how to "fix" what was going on.
I was surprised at the depression which came AFTER I was diagnosed, in part because MTX tablets caused me such problems and then it took awhile to acclimate to injectable MTX. The greater part was even though I told myself NOT to, I had this idiot idea that once I figured out waht it was and how to treat it, I would be "all better". Yeah, right.
We're doing things differently this year, including a weekly check-in as to how I'm feeling and what I'm doing. I have been allowed not to have a desk but to sit in a chair and a half with strategically placed pillows and use a computer desk. When we have meetings, instead of sitting in uncomfortable chairs, I'm allowed to bring my person chair in (I'm also allowed to sit near a door in case I need to leave to move around). She's aware there are some days when I'm simply not going to feel like coming in so I can snuggle under my heated throw. I need to ask for a headset to answer the phone.
I supervise six lawyers and an administrative staffer. They hvae been SO caring and so understanding and so supportive. They kept me going.
My division director saw me leaving this afternoon and remarked on how much better I was moving. I told him I felt well (and I do). Last week was a different story--I felt lousy, moved lousy and spent one day under my heated throw. I'll handle tomorrow tomorrow.
Thanks everyone! Some days are definitly waaay harder than others, but I see Im not alone in just motoring on... I too need this job and it scares me that I might not be able to work. It is comforting to know I am not alone with my fears!
thanks for the support.
I am the entire IT support staff for about 250 users in 10 medical practices. I'm pretty much on the move all day. Something somewhere seems to be sore on any given day (SpA and AS). I'm getting Remicade infusions and just had my 4th one. I refuse to let this slow me down or affect my lifestyle. I do not take pain killers or aspirin. I try to ignore the pain and stiffness and grind my way though. Just how I am, I guess.
Im IT Support too :) You dont take pain meds? Wow! Hats off to you!
Sherm said:
I am the entire IT support staff for about 250 users in 10 medical practices. I'm pretty much on the move all day. Something somewhere seems to be sore on any given day (SpA and AS). I'm getting Remicade infusions and just had my 4th one. I refuse to let this slow me down or affect my lifestyle. I do not take pain killers or aspirin. I try to ignore the pain and stiffness and grind my way though. Just how I am, I guess.
I don't take pain meds either; just 50 units of MTX on Friday. I was taking 1 or 2 mg of Xanaflex (muscle relaxer) at night from January to September of last year. I've taken it sporadically since.
Next week, I add Humira every other week so we can slowly begin to reduce my MTX dosage.
I am a teacher working with EC, K and 1st grades in Music. I was very concerned with my limitations (can't really stand for more than 10 minutes at a time) yet I am making it work. My principal doesn't hold it against me as I have control of the kids and do my job well. I cannot do some of the duties (like recess) but have other duties that do not require as much standing. I still have to go all around the school different times of the day but I feel better when I am working. My mind isn't on my pain but on the kiddo's and it forces me to move a certain amount which helps in the long run. On bad days, I use my cane and orchard mitts but the kids know I have some problems and if they ask questions, I just tell them I hurt that day. I don't know what the future holds, but I am going to keep working until I cannot.
I have PsA, but I'm fortunate in that my med (enbrel) works quite well for me. I work full time without any particular limitations. I know it doesn't work for everyone. I wish there was something for everyone, this disease is so nasty. :(
I hope your doctor tries you on biologics soon because as imperfect as they are, they work a whole lot better than anything else.
There is the Employment Standards Act. It provides 16 weeks of unpaid leave a year while protecting your job. I don’t know if it is similar to our Family and Medical Leave Act, but you are protected any time you have to leave or call out from work due to your illness. Here, we have to have certain forms completed by a doctor to turn in to the employer. I don’t know if you have looked into that or not.
I plan to apply for long term disability insurance as soon as I am better managed on my new drugs. I tend to think that I will be denies, but I know I should try anyway.
I don’t work full-time right now. I was off for 6 weeks on short term disability, and really wanted to go back. I have been back for three weeks, and so far, I have not been able to work the full amount of time scheduled. (4 hours a day, 5 days a week). My employer let me change my schedule to every other day, 6 hours a day. I hope to work myself back up to full-time. I am just not used to it. My stamina is shot, and I have quite a bit of pain by the end of the day. But the great part is that for every day I work, I have a day to recover! That schedule is working out the best so far. I think I Amy actually be able to get back to full time that way.
What type of work do you do? Desk or physical?