Okay, so I am new. I am scared. I am a computer specialist and work on fire trucks. My job can be very physical and then very sedentary at times. I was diagnosed with psoriasis a few years ago and nothing would make it go away, but Mtx. Then the arthritis came with a vengence. Now that I think about it, I wonder if I haven't had that for years and years. I am now taking Enbrel and Mtx and Tramadol. But I hurt so bad I can barely stand it. I have almost no energy and I don't know how much longer I can keep going. I truly want to have a life, I want to ride my motorcycle again, I sooooo miss riding!!!!!!! I want to do my job, but going to work hurts more every single day. I am so afraid to say this to my rheum doc. I don't know why, but I just don't know what to do. How do you approach them? I have worked where I work for almost 18 years so it isn't like I just am trying to get out of it, but physically and mentally I don't think I can go another year! How do you approach the doctor and ask about retiring?
Hugs to you, Chris! Coming to terms with our limitations is one of the most difficult parts of living with PsA - and making big changes in our lives is perhaps the most difficult.
Perhaps the easiest way to communicate with your rheumy would be to print out what you posted here and hand it to him/her. For some people, it's difficult to get the words out of their mouths, but printing out symptoms, feelings, difficulties, etc. to let our healthcare providers in on how we're doing that way is easier.
Please talk to your dr. mine is fantastic. I too am scared as I also think I've had this for years. When I was younger my mum was told it was growing pains, I know I laugh at that as well, mine is hereditary but my mum was adopted, so I've no medical history. I'm not giving in, I refuse, the pain is really unbearable but my G.P. doesn't want me to get a scooter as I will become totally debilitated. We do have a life only not the one we knew, every day is different. I have other medical conditions, one which is also hereditary, I'm losing my sight but no medical condition on this planet will take my sense of humour. I too am new and scared but I don't feel isolated or alone any-more.
Thank you both for answering. I just have a hard time talking to my doctor she is hard to understand. I only recently began seeing her and I am afraid she will not believe me and I am considering making an appointment with my gp first to discuss this with her too. I am so disheartened. My work just doesn't understand, I am on a daily demand and goal meeting deadline kind of stressful job and I just can't keep up. I just can't. So far I have excellent reviews, but I don't want the quality of my work to suffer. I have been here almost 18 years and yet have no sick leave to show for it because of PsA and yet every single day I have to force myself to come to work. It is scary.... I work for a government so I have retirement, but I am scared to approach the topic... does that make sense?
Are you talking about retirement or disability? I don’t think you need a doctor’s permission to take early retirement…or to switch careers for that matter! I used to work in IT as well and then do the bookwork for my hubby’s company part time from home. After a nasty flare we decided i would give up my day job and just work for him.
If you are talking about disability, that’s a bit more tricky. You’re better off being straight forward about the difficulty you are having. Try to keep a journal of your symptoms and how they are effecting you daily. Include what parts of your job are specifically difficult, your energy and pain levels.
It sounds like you really enjoy your job so perhaps a short term leave until your rhuemy has your psa under control is a better option? I hope you find a solution that works for you and you get some pain relief soon!!
Absolutely tell your rheumatologist that you're in pain! How can he help you i you don't tell him?? There's other biologic options for you such as Humira, Remicade, Simponi, Cimza and Stelara. Those are the most effective, but there's others too.You have a lot of things to try before you have to accept this pain.
I can definitely relate to you. I was diagnosed like 2 months ago. I’ve had psoriasis since I was 7 though. I have this thing where I don’t like to give my dr (any dr for any reason really lol) the full picture of how I feel. I don’t want to over do it and make it seem like this overreacter type person. I’m so weird. Lol. I try and explain how my life has changed. This works better for me. Like I say well before my house was spotless all the time-perfect model looking. And that was the way I liked it. Now-not so much. I know I didn’t change-because it still bothers me. But its just not an option for me anymore. The more I do the more I hurt. Yet the more I sit and then try and do-the more I hurt. So for you-maybe go to your doctor and just say I’ve been doing a great job for 18 years and I just can’t do what I did anymore. What should I do about that. I don’t want my work to suffer. And just leave it open for your dr to talk. Obviously you are not trying to just get out of working. 18 years is a very long time. So its obvious even to me just reading this. That you are in need of some changes, cause you wouldn’t even be considering this if it wasn’t for this crazy disease. Hang in there
Karyn
You guys are a lot of help. I guess I am having a hard time being clear, because I never thought I would be in this situation. I honestly don't know what I am asking for. I have short and long term disability insurance and a disabilitiy retirement option as a government employee. However apparently any of those can be refused or denied I guess by their doctors. I am not sure how any of that works because I never expected to have to deal with any of this. I always thought I would work my thirty years and retire. I have ten years to go to meet that goal, because I have 20 years total in the retirement system, but 18 with the department I currently work for. I do enjoy my job overall, although I do work for a man who doesn't understand arthritis at all. He believes if you simply "push through the pain" you will do better. He tells me all the time, just push through and it will be okay. I wake up some mornings and it is all I can do to get to work due to pain. I really am sick from the Mtx lately and the Enbrel is just not getting it.... I don't know what to do. I am due to see my pain management doc on March 19 but she is recommending Opana which I can't take and work. So what do I do? I think I am ready to go out short term disabilitiy for a while and see how I feel, with the option of coming back, I am not ready to give up, I never want to give up! But I can't just keep forcing myself to drive in to work with numb fingers and toes and then barely making it through the day, crying driving home and getting right into bed to wait til Friday when I take my Mtx and sleep the weekend away. What a miserable life right now.
I would start a journal and speak to the pain management doctor about your concerns. I know i had to ask the rehab doctor i was seeing about working…it was as if it didn’t occur to him that i couldn’t work if i couldn’t even stand upright (sacroilliitis flare). He readily agreed when i asked. Initially i had gone out on short term disability, then started back to work on a part time basis (4hour days). After about a year of part time i decided to quit.
When employers hear “arthritis” they tend to think “troublesome joint” and don’t really get the extent of the disease if they don’t have any experience with it. That is probably why your boss thinks you can just “push though the pain”. That for us isn’t the case!! Sometimes i wish it had a different name. Nothing like someone replying with “oh yea, i’ve got arthritis too, in my knee from an old injury”. Makes me want to slap them!!
I totally agree...I would start by keeping a pain journal and talk to your pain doctor about your concerns..Then I would start by going on short term disability and take some time off and see if that helps. If it does, and you can go back to work, start back on a very limited basis....they will work you into it. If it doesn't you have the option of a long term disability. Not sure how it works in the U.S. but in Canada, where I am on LTD, you continue to accumulate your pension while on long term disability (your employer is required to pay for it), so even if you can never go back to work, you are not giving up the valuable pension or long term retirement benefits that you have worked so hard for. I would definitely start with the short term disabilty and go from there....talk to your pain doctor about it....there is no way I could be working with the type of pain I am in....I don't know how you do it. Hope you feel better!
Hello ,sorry about your plight (not to belittle your post), but you said everything i felt, and am going through. From my experience so far my doctor never mentioned it; leaving me to believe that only YOU can tell you to retire. This disease SUUUUCKS! It's not your fault , you don't deserve this , but you are stuck with it. I also am an out going person whom loves physical experiences ie: skiing , backpacking, working with my hands. Growing up on a farm will do that to ya. Stress is your enemy it just seems to make the symptoms worse.... for me anyway. I have learned that i will halve to regroup my life to even come close to making the income i once had. (crane operator marine construction). For me this disease has been a life changer. hugs to ya hope my post helps instead of hinders you.
Hello to you Chris, Sorry that you are a fellow warrior in this fight. It can be the cruelest of diseases. Since you are at a crossroads in your progression, it would be a good time to ask not only yourself but your rhuemy too some hard question's. Can I make it to work today safely? Can I make it back home at the end of the day safely? Is your distance to drive both ways far? Do you find the pain unbearable or manageable day in and day out. Yes there can be terrible days and sometimes pretty good days. Your rhuemy is your partner in this and you should feel comfortable with her/him. If you don't, find one that is interested in you and how you feel. Enbrel is lower end there are more options available. I would hope your rhuemy would not hesitate to try something that is right for you. As far as the boss goes, i was that guy at one time in my life (sad). He is trying to get you to stay so he doesn't have find someone to temp. fill in. That's not your worry, it's his. Let him go do HIS job. You take care of you. Best to you. Any questions just ask
I see my pain management doc in 10 days and I am going to approach her first. I am going to request a therapist through her I figure the more docs I have on my side the better. Right? Just a thought here. But as I feel worse and worse I am dreading meeting with my rheumy. She walks in the room, says a few words, and walks out. I truly don't feel I am getting a whole lot from her. I know I have only been on Enbrel for two months, but so far it hasn't helped at all. I am really suffering here and I don't know what else I can do. I guess I will bite the bullet and ask. So for today here is my motto: "I'm not only putting on my big girl panties, I'm putting on my bitch bra, my butt kicker boots and my spiked leather belt with the boy toy belt buckle. So don't tell me "deal with it". I got this covered."
If your rheumy is treating you like that, it's absolutely not right. My rheumy sits down with me for 45 minutes each appointment and has called me from home to return my call. Would it help to go into your rheumy appointment armed with a written list of questions and concerns and as soon as she walks into the room say, "Wonderful! I've been waiting to talk to you for weeks about these things." and go on from there? Sometimes it's difficult to see our doctors as our equals, but they are. They, in fact, are working for us, so we need to get our / our insurance's money's worth!
You can also explain what work and home life is like for you and see what they would recommend. I'm betting they'll tell you to take time off work or to stop working.
HA HA....ChrisFire, that is the BEST motto I have ever heard...I might have to use that one!!!! I feel sorry for you though about your Rheumy. As difficult as it is for me to get in to see mine, at least she spends the time with me when I do get there and will answer my questions. I agree with Nym....I think I would go in with a list of questions and say "I have been waiting to talk to you for weeks about these things" or "WAIT....I still have questions...(as she is walking out the door of course!!). You have to stick up for your self, as difficult as it is.
I think approaching your pain management doc is a good idea, they tend to be more sympathetic creatures by nature, I think just because of what they do, and getting a referral to a therapist through her is an excellent idea....you are totally on the right track!
Good luck to you! (hope you don't mind be borrowing that motto a time or two!!! LOL!!
Hi Chris - I know what your going through at the moment. I'm in the Police force and like you on daily basis I'm suffering with the numb fingers and toes. When I walk I shuffle or walk like I have skis attached to my feet. The pain is unbearable some days. For me nothing seems to be working I inject with Humira take Lefludomide and Diahydracodeine which makes me want to sleep. When I;m sitting for too long I can't get up and yet I can't stand for more than 10 minutes before the pain in my joints and feet are screaming at me to sit down again.
Like you my boss doesn't seem to understand and neither do the Drs in the Wellbeing Dept. Just to do simple everyday things now makes me soooo tired. At the moment I'm having more bad days than good, I think this is because I have requested a more sedentary role in the force and they are refusing to make a decision as they think I will be getting better - obviously we all know so different.
I think the idea of taking some time off will be good for you as then you can decide which direction you want to go in.
Good luck with your Rheumy - will be thinking of you ... Big hugs :)
ChrisFire said:
I see my pain management doc in 10 days and I am going to approach her first. I am going to request a therapist through her I figure the more docs I have on my side the better. Right? Just a thought here. But as I feel worse and worse I am dreading meeting with my rheumy. She walks in the room, says a few words, and walks out. I truly don't feel I am getting a whole lot from her. I know I have only been on Enbrel for two months, but so far it hasn't helped at all. I am really suffering here and I don't know what else I can do. I guess I will bite the bullet and ask. So for today here is my motto: "I'm not only putting on my big girl panties, I'm putting on my bitch bra, my butt kicker boots and my spiked leather belt with the boy toy belt buckle. So don't tell me "deal with it". I got this covered."