Melissa's post on whining (said affectionately) made me wonder for those did work and are no longer, did you miss time periodically from work or were you off fulltime for longer periods of time? How long did you continue to work before you figured it was better to just be at home? Did you find that your employers were supportive of having to flex your schedule on a moment's notice? Do you feel like continuing to work helped or made your RA worse (I sometimes feel like work is getting in the way of taking better care of myself)
I think money should grow on trees even though my parents always assured me it didn't - wouldn't that make decisions easier.
hi cathy i worked for 4yrs.. my employers never knew i had ra as i worked
on building sites . and never went near the main office..
i never had any days off only a few hours once amonth blood work..
my hospital stopped me working. but at this stage i was being lifted in and
down better.. but i would rather stayed in work.. when its over its over
Thanks for sharing - Sounds like you had wonderful workmates. I worked in the office for almost 10yrs, but wasn't officially diagnosed with RA until 2007. I did have days where I couldn't turn my head or walked funny or had hand/wrist issues, but I just worked through them not knowing any better. Everyone always said, "there's always something wrong with you." What? It's not normal for a person to be tired all the time??
I'm working part-time now and really struggling (also a stay at home mom). I know there is no way I'd be able to have an hourly/salary full-time job. I'd be calling in and leaving way too much. Stupid RA...
I've been working with RA for 6 yrs now and I have no desire to stop. It depends a lot on your job of course. I have a nice, sedentary job, and a very understanding boss who gives me a lot of freedom when I need it. I think work helps me. It gets me up and moving each day. I take a mid-morning yoga break and walk about 2 miles with a co-worker at lunch. I don't know what I would do sitting around the house all day. It's important with RA to keep moving as best you can...and work provides a strong incentive. The fatigue usually bothers me more than the pain, especially in the afternoon. I don't enjoy business travel anymore...but I try to adjust.
for was real supportive. I basically picked the hours that I could
work.
Now though, I work from home and get to rest when I need to.
Mrs.A , I think you have one of the hardest jobs at being a full time mom.
I worked for 18 years and loved it even though some days were really bad. I worked in a small office and had a really caring boss and coworkers. I was in remission when I quit and now work from home. I couldn't go back to an office to work if I wanted to now. My feet hurt too much. Sometimes I would rather be back at work in the office, but feel blessed I can work from home.
I am back to working 40 hour weeks again, for about 8 months now. I had worked temp before, when I was dying ill with my disease, and told my husband I was positive I could never work full time again. But I am. We have our fingers crossed, as we realize this could change in a moment, if this beast turns on you. Boney, thank you for your post. Take care ~~ Cathy
I am working a fulltime job in an office and have been there forever. Even before I was diagnosed, I limped in, felt horrible, hands hurt, I just kept taking Advil. Drs told me nothing was wrong. Feet were horrible and I was in horrible pain. Foot doctors said I needed orthotics--I got them--did't help. Finally one dr. picked up on the fingers heading into a slanted position---then a RA dtr. Actually, now I am doing tons better. I have to keep working--for the health care, 401K, etc. I haven't missed a day in many years. People haven't picked up on my slower days, and I guess I hide it well. Probably better that I make myself go into work.I had my own cleaning business for about 10 years, worked on Thursdays as a church secretary, and I was a girl scout leader for 9 years, cub master for 3 years, and Sunday school teacher for several years. That was then this is now:
I work at the church (takes a couple of hours of typing and spend first hour or so talking)and alot of the times, I don't make it in on Thursday but Rev. Mel is really understandable and as long as I have the bulletin done by Sunday morning, it's good. Of course, there were times, I couldn't do the bulleting and she filled in for me.
Now I am broke, used to make good $ and was able to go and do things. My clinic that I go to for pcp and rheumy just turned me over to collection even though I faithfully sent them a month for the last three years. Although I've only suffered with RA for only 2 years, I've had problems from fibro for 8 years and degenerative disc disease for 10 years. I did administrative work, and for the last 5 years I had a desk job that also had some physical aspects which became more and more difficult for me. They were key aspects of the job and couldn't be changed by ADA accommodations. Also, a flex or part time schedule was not possible.
I never took a block of time off (except when my appendix burst...), but was regularly late and frequently absent for a day or two when things were particularly bad. There were days my husband had to drive me to work because I wasn't able. Round the clock pain meds kept me working during times I didn't think I would make it. I often came home in tears, although many days I had to go right from work to my doctor appointments.
Early on I was able to compartmentalize the pain and fatigue and basically push it to the end of the day...the minute I got out of work it would all descend on me in a rush. But after so long, I was finding that I couldn't put it aside at work and it robbed me of my concentration as well.
It was quite obvious to those I worked with that I had medical problems, and I was open about what was going on. Although my boss was very understanding, he still needed someone to be there and do the work. Coworkers pitched in when they could.
This past October, I became significantly worse. On the day of the most important customer visit of the year, I woke up and found that I couldn't stand because my feet and ankles were so bad off. I spent the day crying, dragging myself between the chair at my home computer desk (best one for my back) and the bathroom 3 feet away. I didn't eat that day because the kitchen was too far for me to move.
I started having more really bad days, although not quite as bad as that one, and could no longer reliably say I'd be coming in to work, much less getting any work done. There was no one else to fill in for me when I wasn't there, and my position was very visible.
I enjoyed working and I liked my job and my coworkers. I also felt that working kept me moving physically, kept me on a schedule and was good for me mentally. OTOH, it was also forcing me to push myself too hard on a regular basis and I felt it was to the point of making my health worse.
At the end of November I went on FMLA/short term disability, hoping to be back to work within a month or two. Two weeks ago, I transitioned to long term disability and my position is no longer being held for me. I am still hoping to get back to working, but if/when I'm ready it will probably be something home-based, part time or flexible.
It's a difficult transition to make, but it is the only choice for me at this point. Since being out on disability, I finally get adequate sleep and rest and I'm able to pace myself better. I was able to start aquatic physical therapy as well. Perhaps most importantly I've been able to let go of the feeling of being an unreliable, underperforming employee. I was fantastic at what I did, and on a bad day still probably better than many, but knowing that my boss couldn't count on me to show up and get my work done was stressful beyond belief. Now I get to stress about money and benefits instead.
Cathy, I didn't mean to write a novel here, but it's all very fresh to me as I just cleaned out my office on Wednesday afternoon, so I hope you understand.
Innerglow - Not a novel at all. I think it's important to understand how RA may impact work and the feelings that go with it. I'm not at that point of thinking about quitting, but I also know that it could change and so need to prepare for it, just in case.
Thanks to all who shared - I agree that having something to do every day is good and keeps you motivated, but I am looking forward to the day that I can at least cut back to 30 hr/week and save energy for myself as well. Work defines us so much and when you add RA to the mix, I wonder if it's a struggle some days between the two - what am I today, a person with RA or a good employee. I agree with Maimi that having RA with small children must be the hardest job - at work you can ignore the adults if needed, not an option when your children need you.
Thanks again - it's now 6:30 and time for me to think about getting ready for work. My goal is to make it all day today.
I have worked part time for about the last 12 years. I had my knee problems but kept working through. I did take about 18 months off after both knee replacements and some other health issues during that time. But I've been working for 4 years again. Always part time. I was diagnosed 2 and a half years ago but the real problems started 10 years ago. I am hoping to be able to keep up work for another 5 years then decide if I want to retire, I want to be able to make the decision not have it made for me.RA, like all auto-immune diseases, impacts everyone differently. RA has been a nightmare for me and has affected my ability to work. (onset 2/06, diagnosis 8/07).
I was diagnosed w/ another auto-immune disease - Graves disease - in July 1999. I was a memeber of an on-line support group for that disease for quite a while and was amazed at what a painful disease that is. I say this b/c I didn't have any symptoms and only missed 3 days of work due to an allergic reaction to meds that put me in the hospital. My labs were clearly Graves, but my symptoms were not.
So to anyone who can't work due to RA, please don't compare yourself to those who have been able to work. Their circumstances might be very different than yours.
Enbrel has helped enough that I am preparing to enter the workforce soon. I am very scared, b/c I feel I have so many limitations w/ the pain I feel alone. I don't know that I can do it, and I don't know that I can cope w/ failure. I guess I'm already not listening to my own advice!
Take care,
Nori
[QUOTE=nori king] I am very scared, b/c I feel I have so many limitations w/ the pain I feel alone. I don't know that I can do it, and I don't know that I can cope w/ failure. [/QUOTE]
Nori, try not to think of it as succeeding or failing...try to think of it as you are ready to see how much work you can handle right now. No matter what happens you will have learned something. And if you find you're not ready to work now, you might be ready to work another time. The success is in giving it your best shot and not letting the fear prevent you from trying. I have had RA for 30+ years and have worked through all of it. I am a programmer, so I don't have to run around much but it sure has been hard on my hands, wrists, and elbows. I could not have kept a full time job if I had to be on my feet.
It is catching up with me. Work is not happy with me. Except for insurance I don't really care. Well yes I do. It hurts.
i was a programmer too (good old Ingres). I used voice software to do my keyboarding and thought I had outsmarted the RA - until it went to my spine. So I retired, at 49.
Retirement has its benefits, like no office bully. But I do miss work, even after 7 years.
I do work, continue to work. I'm an ER nurse. For the past 5 years or so I have been doing triage. I started doing triage long before I was ever diagnosed. I've had symptoms for years but not enough joint damage to be detected until 2007. I've missed so much work that they've referred me to FMLA. Now if I have to miss work I have to call FMLA as well as my employer. When I was first diagnosed and was doing lots of research on RA, I went to qebsite that said that most people stay in the workforce for 5 years after their diagnosis. You can't imagine how much that frightened me. I'm 48 years old. I am still paying on my daughter's enormous student loan debt, I have a house to pay for and of course I need money to buy food, gas etc. I don't think I could pay for all the things I need to pay on disability. Then there are times that I am quite certain I can't work anymore. Sometimes I hurt so bad and have great difficulty doing anything but lying there. I need a fairy godmother to come down and smack me with her wand and take this ^&*(%*%& RA back wherever it came from!!I thought that working was keeping me going by making me get up in the morning and keeping me distracted from the pain. But I just came back from a very physically demanding vacation and was amazed to find that I was FINE! Better than normal in fact - in spite of the physical activity and a bout of food poisoning. On the other hand, when I learned of my brother's cancer I flared big time, and I never feel this good when I am working. I have tried to decrease my job stress, but I am beginning to wonder if working is worth it. We'll see what happens when I go back to work this week. It is right that you can't think of working or not working as succeeding or failing. The goal is to learn how to make your life manageable and enjoyable, and attaining that goal may mean working or not.
Hi InnerGlow and everyone,
Thank you for your words of encouragement. For those who type a lot, are you using splints? I am in the process of ordering 3 for 3 fingers that have ligaments that are loose and that I have problems with. I struggle with typing, b/c those fingers want to sort of 'overextend'. Anyway, the occupational therapist I'm working with thinks these will help.
I am 34, single, and living w/ my parents. I want my own place again, but I need to work to get to that point and of course have good benefits to pay for the biologicals and doctor visits. I don't think I (or my parents) can imagine this arrangement for much longer.
Nori
I'm really feeling for you Nori. Family is lovely but we need our own place.
I type with one hand, on a 7" notebook computer, lying on my side. I use my left hand (am right-handed) because my right shoulder is swollen. Needless to say I am so slow that I never use Chat. And it does get sore.
Have you tried using Dragon voice software? My tiny pc couldn't support it but I used it when I worked and it saved my joints.
Hi Nori
I'm glad to hear that Enbrel is helping and you're trying to get back in the workforce. I'm sure you're anxious to get your own place again. I'm not familar with splints, but I'm sure others are. Maybe you should start a new post asking the same question and see if you get more responses - just a thought.
Take care
I use splints. I have them for my wrists and sometimes I sleep in them to keep my wrists straight. They really help take the pressue off your joints and I would suggest them for anyone with RA. I used splints when I first was diagnosed with RA 11 years ago. I wore them mostly to sleep, for fear that I would roll over my wrists and wake up screaming. What I found, was that the splints immobilizing my wrists for so long like that caused the stiffness to get worse, and my mobility during the day was drastically reduced. So I stopped using them. I've learned to protect my wrists by tucking my hands up around my neck when I sleep.
Typing still causes stiffness and soreness, so I take frequent breaks to rest them, and it helps.'
When I first got RA I was only 37 and a single mom raising two young children alone. I had a mortgage, a car payment and private school tuition for my kids that I refused to take them out of. So, not working was not an option for me, even though my RD at the time told me that most people are into disability within 5 years. I was scared to death! That was 11 years ago and I'm still working. I have an understanding boss (I work in healthcare), and my job is also sedentary, so that helps. I'm determined to decide for myself when to retire as well.... I know I won't work till I'm 67, but I don't plan on retiring soon.
I worked for 8 years after I was diagnosed. I wrote for the newspaper, so my job was not stressful and was sedentary. I left that postion and became Director of the senior center and a large volunteer organization. I was extremely active, on the go constanty, very physical and stressful job, worked 50+ hours weekly, and my door was open to 3,000 senior citizens that had a problem. My RA/PsA flared constantly. I was able to do the job fulltime with the help of my volunteers.
My treatments kept changing because I couldn't find a combination that worked. Luckily, my co workers, volunteers and the board understood what I was going through and everyone was extremely helpful. Once I started biologics I knew that I couldn't do the job any longer.
In the last year of working I cut my hours from a 50 hour week to 30 hours, then to 24 hours and finally on advice of my RD I retired. I wasn't able to do my job and I knew that I would only get better if I made my health the priority in my life.
That was 3 years ago and I'm now in clinical remission. I really believe that the stress of some our jobs feed RA. There was no way for me to lesson the stress of my job and I recognized that it was time for me to retire.
I was lucky because I was 58 years old and retirement didn't hurt us financially. I worked because I loved my job. Once I got rid of the stress I started to get better.
It wasn't easy to retire, it was an extremely difficult decision because I truly loved my work and was good at my job. My pride/ego wouldn't let me retire and that's one of the reasons I kept reducing my hours over that year. It took me that long to realize that I wasn't functioning at 100% physically or mentally and my job required someone who could give it 120% ,and not someone who was only working at 30% because of pride.
If you can reduce the stress of your job I really feel that you can reduce the symptoms or flaring of RA. Lindy
I was diagnosed in 1985 while working in hotel mgmt. I never missed a day of work until the day of my first knee replacement in 2000. I did have to move from an active rooms director job to a more sedentary job in sales and revenue mgmt..i did that in 1996. It wasn't easy I sacrificed a lot in my personal life to keep up the job. But work provided me with a roof over my head and medical insurance. In 2000 I started a on going series of surgeries as the condition of my joints spiraled downward (the damage got too much to ignore). So finally in 2006 I took a 3 month LOA from work, i went back for 3 months and then was off again. My last day of work was sep 1 2006. Finally at the end of sep 2007 I filed for SSDI and was approved in Nov of 2007.
Janex, I've never heard of Dragon voice software, but it sounds like you have really adapted well.
I think a good point brought up mult times here is stress and the job and how that seems to affect RA quite a bit. I get stressed out over things that most people wouldn't. Somehow I've got to get a grasp on that or my health will be affected severely.
Meditation has been suggested to me so many times. Again, the patience problem comes up, but at least it's free!
Oh, I got a temp splint while I'm waiting on the metal ones and I think it will be good. It prevents my finger from hyperextending, but allows me to bend normally so that it won't get stiff. I can already tell a difference with typing.
Nori
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