Wednesday, August 13, 2008 sandy asks

Q: Does anyone manage to hold down a full time career and cope with the affects of RA .

I was finally diagnosed with RA last November after spending months and months in severe pain with huge swollen fingers and swollen knees. I am a Lecturer in ICT but have been off work for 2 years now with degenerative disease of the spine and now RA.

Its driving me crazy I desperately want to get myself back to work and continue my career but everytime I think I may be capable of taking up fulltime employement again my symptoms get worse and I'm back to square one again.

The lonelyness and bordom of being at home alone all day is getting to me and I have longer to think about this horrible disease and how its changed my life. I'm sick of taking medication and all the horrible side effects as well as coping with the pain and fatigue that comes day after day and want my life to return to normal again.

Does anyone have any suggestions on how to manage this disease and continue a normal working career? Does anyone else feel like me or am I alone and just not coping well?

I've already had to move house and give up my lovely 200 year old cottage as it was just not practical for me anymore and could not afford to live there after ceasing work.

Help !! I just want to be normal again !!

Sandy

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Answers (14)

Lene Andersen, Health Guide

8/14/08 12:02pm

I hear you on wanting to be "normal". Having a chronic disease is one thing, being forced to not work just rubs salt in the wound, doesn't it? RA often affects our ability to work - sometimes it's manageable, other times you have to drop out. It not only hurts your bank account, but your self-esteem, too. The good news is that when your RA is managed with medication, it's quite possible that you'll be able to return to the workforce. Since you have finally become diagnosed, it means that you disease can be treated, which hopefully will lessen its impact on your daily life.

When you have a disease that impacts your mobility and energy, working full-time can be an exercise in self-destruction - sometimes (not always), full time is just too much. However, that doesn't mean that you can't work. If you have a creative approach to employment and have an employer who is willing to be creative, as well (or is mandated to be creative), there are all kinds of modifications you can do to change the process off your job, but not the end result. For example, I used to work in policy development where a lot of the work was doing research and writing - tasks that could be done at home. So I had an arrangement with my boss that I would work from home on a fairly regular basis (as often as 1-2 days a week, depending on what else was going on at work), which made me less tired. As well, on the days where I wasn't feeling well, but not actually sick, I would be able to sleep a little longer, sit around until the painkillers hit and then do some work while at home. I also worked 80% of full-time. You being a lecturer may lend itself to the same sort of arrangement - they are times where you have to be physically at work to do a lecture, but the prep can be done anywhere. The Americans with Disabilities Act may help you here - I found a website (here) with a description of reasonable accommodation, which among other things can involve restructuring of a job to enable you to perform the essential duties of the job, but perhaps use a different process. I just had a thought - ICT is computer technology, right? Aren't there companies out there that develop lecture series on CDs or via the Internet for long-distance learning, so you don't even have to be in the same room with the people you're teaching? It may expand you options for your career to think outside the box. It might be helpful for you to find a disability advocacy group in your area - such groups often know more tips and tricks for employment and accommodation than e.g., regular employment agencies

People like you and I will probably never be completely "normal", but that doesn't mean that we have to become housebound and give up being a contributing member of society. Developing a career may take a bit longer than it would if you did not have a chronic illness, but you don't have to give it up. Having an illness that affects your abilities will require you to rethink the way you do things, perhaps even rethink where you get your idea of self worth. For many of us, who we are is intricately tied up in what we do, so that work = self. There are many other ways of nourishing your self-worth, of involving yourself in your community and of feeding your soul.

Good luck and don't give up! Please write again if you have more questions.

Lene Andersen, Health Guide

8/14/08 12:04pm

Forgot the link to the ADA page. It's here.

Lenora Taylor

8/14/08 1:04pm

I understand you completely. It sounds like you have severe pain. I usually have pain, but during my flare-ups it actually helps me when I come to work. If I stay home, I tend to lay around and not do much---so they pain gets worse.

I was given a 120 ml. of cortisone 3 weeks ago, and I also started taking "The ZONE" Omega-3 concentrate capsules....I also take Celebrex twice a day. The combination of these 3 have helped me feel great.

I like walking....in the old days, I used to walk with my dogs about 3 miles a day. It's been months since I've been able to walk even a mile. Yesterday I was able to walk 2 miles....and had enough energy to clean my house.

I feel for you, RA really does suck. The meds available are so dangerous. But don't give up, my Doctor and several articles are talking about new drugs that may be out by the end of this year that are not as dangerous.

nk41042

9/ 4/08 9:49am

I have managed to work outside the home for the past 30 years since my diagnosis. I resigned from a job that was demanding too much of me physically and I was blessed to find a part time job that allows me the flexibility of going in to work a little later in the morning and, should I have a flare, understands my absence. I let my employer know my limitations from the beginning but he took a chance on me and we have been together for 22 years. My responsibilities have changed through the years, from technical to more management, and I have refused to give up. There are a lot of compromises though....my house is not as clean as I wish it was and I come home from work tired and unable to do much, but I shine on my days off! I know that there is an employer out there who would work with you. Start part time...I did, and work into something more. It is amazing to me that there are employers out there who understand our limitations, but hire because of our determination! Hang in there...Nanci

(living with arthritis for 30 years, two new knees, MCP replacements and back surgery)

I may not be able to move as fast as the energizer bunny, but I keep going and going and I am 56!

fellular

9/ 4/08 10:37am

Hi Sandy, I am no expert but I have RA and a full time job outside of the home, as well as being my husbands secretary when I get home from that job. He is self employed so I do those office duties as well. There are days when I wish I could lay in bed all day especially when I am having a flare and my period and its raining all on the same day. UGH!! LOL But I have more good days then bad. Maybe you could go back to work doing something else, perhaps less stressful or a position where you can be off your feet more than on. The fact that you were diagnosed and have begun medication is great, perhaps if you are not getting releif you should change meds. I do well with methotrexate. Cutting you work load at home will help also. as the one person mentioned, perhaps your house won't be as clean as you like it, I feel that way some days too, but find a comfort zone if you will for housework. the fish oils are great for inflammation as well as taking a multi vitamin and I drink a nutritional beverage called monavie juice. it is very helpful with inflammation as well, and fatigue.

good luck

Jan

9/ 4/08 8:35pm

Hello,

I was diagnosed with RA in May 2008, and apparently it was found early. I am fortunate that I don't have a lot of pain, but the swelling and tenderness in my hands have changed the ways I do some things. I still work full time as an RN, but find some days I become very stiff if I sit too long. I try to do some type of aerobic activity at least 30 minutes every day, sometimes longer. I also take yoga. I think this is helping me manage the RA. I'm planning to start a new job within the next month, and will require a physical exam. I have not told my prospective employer about the RA yet--I'm waiting to discuss it with the physician who does my exam. At this point I believe I can do the work, but I'm also a little apprehensive (but excited) to start something new at age 53--and it's only because of this RA. I just took my 3rd dose of methotrexate this week, so I don't know if it's going to work. I also take Plaquenil, naproxen, and fish oil. I also drink tart cherry juice every day, as I read this is good for inflammation also (can't say that I have any real evidence of that tho). The point is, I am trying not to give in to the disease, at the same time trying not to overdo.

Jan

9/ 4/08 8:38pm

Hello, again, Sandy,

I meant to add that if your medications start to control your symptoms, I think it would be good for you mentally to work if you want, especially if you find work satisfying. Perhaps you could start slowly to find a pace that doesn't overtax you. I wish you the best!

Bob

9/ 5/08 1:21am

Sandy ... up in God's country ( Canada ) some Doctors prescribe Pennsaid ( declofinic ) for RA ... i was on a long term study with excellent results ... pain greatly reduced , inflamation basically gone , swelling down ... all was well until I developed a alergic reaction ... first an itch , then small rash which dried and really got itchie ... had to go on cortizone for a week to clear up and had to go off the drug , but while on it I felt real good with no pain or discomfort ... give it a try .. Bob.

MAK800

9/ 5/08 11:52am

Hi Sandy:

I can imagine your frustion and feelings of uncertainty. I have had RA since I was 17 and just retired at age 65. I worked some full-time and some part-time for a total of 29 years (the last 15 was full time). I worked in the field of education, got multiple licenses and modified my job to suit how I was feeling. For example: I began as an elementary teacher, but left that because with RA, all the standing was too much. I then tried counseling because I enjoyed working with people and it was mostly sitting. When the school systems began cutting counselors, I received training as a school psychologist, which was mostly sitting, but hard, because I had to travel from school to school transporting my materials. During all this, I had good Rheumatologists behind me, providing the meds that kept me going. Try to have patience. It does take a while to find the meds that are right for you. I do agree with others who wrote here at the site, that there must be ways to modify your job in spite of the disease. You may need to look for part-time work or at home work (which I am presently doing since my retirement with great success), at lease temporarily, until you feel better. Trust me, after 40 plus years, I know. This disease always gets better, it is just always a question of how long it will take. I have also found that reducing worry and stress as much as possible really helps.

Margie

Polly

9/ 5/08 2:58pm

All of with RA are unique in our beginnings, our malady, and our coping. My historical length is since age 7, and I have been retired for some time. I have got the information you need. However, everyone of us is different as I said. Some will take the information, and others will still do their own thing and complain and complain.

No. 1 You are the problem with RA, get over it, and get motivated all by yourself.

No. 2 Solve your own problems. Sure it is hard, so what.

No. 3 You and you only can beat this. No kidding. No it will not go away. But you can

make RA your lesser problem.

No. 4 Begin dear lady by getting a tablet and a pen or pencil. Make a list of how you

can make things better. Make this a hobby. RA Modify your whole environment,

car, work, etc. See no. 5

No. 5 When you get up in the morning, make things accessable so you do not have to

bend down, twist, or lift. Do this will your whole house-go through it and make

notes. List the problem, and then solve it. See No. 6

No. 6 Become a problem solver-beat this thing that is running your life. I have lots of

ideas, but it is more FUN if you do it yourself.

No. 7 Become frugal with everything, make it a game...you will be surprised how

much money you can save. Make lists, do surveys, etc...make it fun. Share

with friends...you will get more enjoyment by conquering the war than moaning

and groaning.

No. 8 Pain can be conquered by distraction...the BEST PILL IN THE WORLD...get some.

It is free. New hobbies. Can not crochett anymore-will do puzzles. Make up

jokes.

No. 9 Be inventive about work. Work the weekends, so that you have extra days off

during the week...do trades. Take vacation days throughout the year. Do not

make a deal with the boss about your RA-do not even mention it. Just make

deals or trades...just ask...works.

No. 10 When you work...as I said...make your home environment RA Proof...then when

when you are home do not act like normal people...you are not normal!!!!

Rest !!!! and then do something and then rest !!! Make everything easy.

We get into trouble because we goof off. Can not do this. Be on guard always.

You can not walk around the block like others in 15 minutes etc.

No. 11 Most of all develop a fun, happy disposition. Read things that are uplifting.

Stay away from bad news, fiction, crummy music. Get your life more fun.

Be a fun person.............works.

No. 12 Start your day with a prayer, and end it with a prayer. Talk to Jesus for heaven

sake. Tell him that you need help with No. 1 through 12. In one week you will

be helping someone else. It is fun to help you dear lady. Some day we will

walk the beach in heaven.

Mary

9/ 5/08 10:10pm

Hello, My name is Mary. I was diagnosed with RA two years ago after many years of pain. I had been tested repeatedly over the years, but it did not manifest itself until two years ago to be measured by blood work. I have good news to bring to you. I currently hold down a full time job in a local hospital as a Registered Nurse, and manage to work a part time job at another hospital. When I discovered RA, my titer was 245, and the normal is only 13. The rheumatologist suggested disabiliity. I used my faith in God, started on methatrexate, Enbrel 50 mg sq once a week. I try somewhat to eat the foods recommended. I make myself get out of bed. I use the hot tub at the wellness center as often as I can. I have tried many things. I only use Advil and Tylenol for pain. and the topical Capsaysin. I have times when I will miss an entire week of work. I have it in my hands, feet, elbows, both hips. I occassionally have to take steriods, and get a depomedrol injection into some of the joints. I keep working at it. I take Nexium for my stomach, which frequently gets upset. I am very vain, and use a lot of makeup to hide . Sometimes I take a week off to rest. This week I have worked 5 out of 6 days,

12 hour shifts as a charge nurse, ICCU nurse, surgical nurse and case managment.

I don't know magic, just the Lord. Good Luck. Give it a shot!! try short days at first.

Barbara Ann

9/28/08 10:30am

Hello, my name is Barbara and I have had Rheumatoid Arthritis now for over a year, yes it is very hard to hold down a full time job with RA, I too have degenerative disease of my spine, and I can understand what you are going through, I am still working a full time position at my job and at times it is very difficult for me to even get through the day. I trust in God to help me get through the day and I thank God for every day that I am able to still move. Has it been harder? yes I can say it has. Take care. Barbara

Calamity Jane

11/12/08 3:38pm

Not a chance. I hear about these people who somehow manage to work full time jobs, and I just can't imagine what they're made of. I was working for awhile as a freelance writer, writing reading group guides for Harper Collins -- a perfect job that I could do from home -- but I couldn't even keep that up, because my fatigue is just too huge and crushing, and the pain makes it hard to sit at my desk for more than about ten minutes. I couldn't maintain any kind of even light work schedule. So now I'm living with a whole lot of fear -- so far I haven't been able to get disability (it's nearly impossible where I live), and I'm living on borrowed money -- no idea what's going to happen. The stress is awful (can't sleep for the anxiety), which of course makes the RA worse. Sorry to send such a bleak answer. Good luck. Are you able to work?

Susan Noel

Michael

2/24/09 5:54am

I am afraid of the same situation. I am a 37 yr old male registered nurse and I work a fast paced stepdown unit. I am having difficuty with pain and lack of coordination in my hands. Pill packs and some simple aspects of my job are driving me crazy. I was diagnosed about two months ago but have been having lots of pain and joint swelling for the last 8 months. I am terrified that I won't be able to keep on working like this. I work 12 hour shifts and am having difficulty making it through the whole shift. I am hoping for a managment job to come around that will allow me to pay the bills. My RA factor has gone from 297 to 612 in the last 6 months. My biggest obstacle is getting out of a chair from a seated position. I am having to use my arm strength to push myself up. When I get up I am stiff and unstable then after a minute or two I can straighten up and go.

Q: Does anyone manage to hold down a full time career and cope with the affects of RA .

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