Working and Rheumatoid Arthritis | Rheumatoid Arthritis Warrior

Working and Rheumatoid Arthritis

Working and RA:

Rheumatoid Arthritis is a thief. It steals so much from our lives. Very often that includes the ability to make a living.

There are ripples out from this one issue into every other area of life. Here’s a short list I bet you could add to.

  • Self-respect
  • Standard of living
  • Health coverage
  • Relationships
  • Loss of your productivity to family, employer, and society

My heart breaks from what I hear every day:

One woman left her husband because he could not work any longer.  She could not accept his being on disability. Maybe she saw him as lazy because his disability is invisible to her.

One woman I know is terrified of losing her health insurance and her house. Actually, I have heard that from more than one person, come to think of it.

I know one lady who works for a man who will not acknowledge the physical problems her Rheumatoid Arthritis brings. Her boss makes her stand on her feet for hours doing a job which could possibly be done while sitting.

A dear friend of mine still works at her job every day; but I do not know how she makes it through each day. She is literally not able to anything else besides her work. There are fears about how long she will be able to do this.

One person told me she knows she is no longer a “viable” employee so she will be laid off from her job soon.

I know many people with RA have had to trade down to a job that they like less, but is more suitable.

Then there are many like me (and the restaurant owner in the video) who were self employed when RA disabled them. She said, “Now I feel even if I applied to somebody else for a job, they wouldn’t want me.”

What about you? Let’s begin a conversation on this which may help one another. At the same time, we will be letting the non-RA world see what we deal with.

How has Rheumatoid Arthritis affected your ability to work at a job?

Working and Rheumatoid Arthritis

Related posts:

Postblog: I have just noticed that one of the blogs that I follow also wrote a post on working and RA! (Good job Terry.) Here’s the link to that blog for a clear view of his work with Rheumatoid Arthritis pain. The blog is called Dual Sport Life.

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

106 thoughts on “Working and Rheumatoid Arthritis

  • March 13, 2012 at 7:38 pm
    Permalink

    hi,my name is roseanne. im 27 years old and have had r.a. for two years now and fibromyalgia. please excuse my lack of capitals and poor spacing. im typing with a bad flare in my wrists and fingers. i gave up my job 15 months ago when i was signed off by my doctor. i worked in a creche and as my r.a. was only newly diagnosed the medication i was started on hadnt kicked in. i was made lift children who were quite large,im short and have a slight build. i was made clean and scrub rooms.
    when i was signed out i was relieved because i was permanently exhausted. but at the same time my dignity was gone,i couldnt wash my hair or brush my teeth. when i left my former employers were so rude to me. i felt like a piece of crap.
    for over a year then i got very ill and depressed. friends dropped me because i couldnt do as much as i used to,i was seen as an inconvenience and they didnt understand my condition.my ex boyfriend dumped me for a party lifestyle.he was tired of me saying i was tired!! i slept for months.
    Last march i improved,went out again,was more optimistic and had more energy. Then I was diagnosed with Fibromyalgia. since christmas 2011 i have gotten quite sick. my arthritis is back with a vengence the last two months and they have increased my meds.
    I watched those people in the video tonight here in bed with a splint on my arm. i cried and cried,im so tired of people thinking im lazy and faking an illness. just because i dont look sick ,doesnt mean im not!!!
    when i explain to people why im not working they look at me like im a hypochondriac,even members of my own family!!
    i feel bad enough already without that crap heaped on me.
    thank u so much for making me feel supported tonight everyone. best wishes to you all.

    Reply
    • March 15, 2012 at 8:16 am
      Permalink

      Hi Rosanne. I’m sorry people are not being understanding. That happens to a lot of us because people can’t “see” the symptoms and don’t realize how severe they are. But it does make it even harder. I hope you’re able to gradually find more supportive people to be around you. Sometimes family members can learn a lot by spending some time on the website reading articles and comments from others. There is an envelope button for that below each article.

      Reply
    • August 28, 2015 at 6:32 am
      Permalink

      I’m fifteen and I have RA and it sucks. I had a liver transplant when I was 2 years old and the past 3 years I have Ben in and out of the hospital more than 20 times. I just recently got listed again for another transplant. I’m homeschooled now because I can’t move around a campus without a large amount of pain. I’m lonely cause my friends have gone to high school, school games, school dances,and I can’t join because I can’t me on my feet for more than 30 minutes. I only have 1 friend who has been here with me through everything and I owe her so much for that. It’s sad to know that you get to know ur real friends when you really need them the most. I feel like no one cares when I’m in pain anymore. I’m 5ft and I weighed 126 before I got sick this year and now I’m 105. My mom told me that I need to lose weight because she was disgusted and embarrassed to be in public with me. She told me I needed to look more like my siblings ,beautiful and slim. My doctor said I need to gain weight for my transplant and I try to listen but whenever I’m in the middle of eating my mom takes the food away and says I don’t need to eat. In the hospital I had trouble keeping food down for 5 months, they were about to put a feeding tube in, my mom thought it was perfect for me to lose weight. My mom used me as an excuse for not finishing her work with her clients when while I was in the hospital She came in to see me once a week. Last year when I was laying I the hospital she went on vacation to the Maldives, Korea, Japan, and China with her friends. My parents and siblings think I’m perfectly fine when I’m in the most pain I’ve been in after a long time. I have to cook 3 meals or more a day for my family of 8, I have to clean after my siblings mess after breakfast, I have to clean the house when my parents leave for work, I have to bathe my siblings, and I have to do the dishes after every meal. I’m just exhausted and an so much pain and they think I’m perfectly fine just because on the outside I don’t show I’m in pain. My siblings think I’m just being lazy and my parents don’t know that after all the chores I feel like I’m deteriorating. My mom took me to get one treatment done. She was supposed to stay with me but left me there and got me when I was done. I wish all of my medical problems would disappear so I can do my chores without getting yelled at by my mom for sitting down once in awhile to rest.

      Reply
  • April 4, 2012 at 6:17 pm
    Permalink

    After being a stay at home mom for 15 years I went to school for CNA. 2 years later I got my diagnosis for RA. I worked as long as I could, but the pain, fatigue etc. not to mention being a danger to my patients because I couldn’t lift them anymore., forced me to go on disability. I was proud of myself for graduating second in my class. I was good at my job and enjoyed it. Now I’m the one who needs help. We are in deep financial trouble now as I can’t find work. I had to let my license go. There was no use n keeping it. My unemployment is about to run out and I still can’t work. I doubt that I will ever be able to work again. I’m only 46. Because I stayed home for so many years raising my 4 kids, Social Security says I dont’t have enough credits to be eligable. What now. Bless my husband, he is patient and kind and loving. He deserves better than this. I have to have faith something will work out right?

    Reply
  • April 13, 2012 at 8:27 pm
    Permalink

    I am a 40 yr old mother of two. I have been dealing with a flare for six months now that has affected my ability to work full time. I am an office worker and type reports for 8 hrs. I am very fortunate that my employer values me and my work, & has pulled me aside several times to reassure me that no matter how much time I need off not to worry about my job. That its me who matters. I know this is not the norm and that I’m extremely fortunate but wanted to give others hope that there are still great employers. I do struggle with the financial hardship that come alongside this disease as well as the inner conflicts of fearing letting my family down, & pushing myself to hard many days.

    Reply
  • May 28, 2012 at 8:54 pm
    Permalink

    Hi there,

    I am 1/2 way through my PhD program and was diagnosed 2 months ago. I’m on methotrexate and plaquenil with some reasonable results. I also am aggressively working with a naturopath, am on a vegan + fish and no dairy diet plus a ton of supplements (I’m not rich !!) I’d say my symptoms have improved to between 40-60% of how I used to function. Unfortunately, I have both RF and CCP positive which has a poorer prognosis. The rheumatologists I see think I have a good prognosis.

    I was able to finish the semester by being Skyped into two classes and two other classes were already fully online. I have the fall semester of classes then the dissertation. I’m 55 years old and can take early retirement from teaching in the public schools in Canada so might have some health coverage if I return. I’m currently enrolled in a US university.

    I desperately need to hear success stories about being employed and living with RA. These success stories MUST be out there- truly !! Kelly, if you know of some – bring ’em on !!!!!! My heart aches for those who have lost so much. I’m also mildly terrified!

    I’m trying to decide whether or not to go back to Canada to live soon or after finishing the degree – although it is horribly rainy, moldy and damp where I’m from. I have excellent student health coverage right now. I also envision basing in Canada and working some in the US in a state where the weather is better for folks with RA.

    Reply
  • June 24, 2012 at 9:27 am
    Permalink

    I have been in and out of work since I graduated nursing school in 94. Diagnose with Fibromyalgia years ago and have gotten progressively worse; ended up in the Hospital from so much pain and will go to Rheumy in 2 weeks to test for RA. I am 46 and am working part time now to try and pay the bills. People don’t understand; even most of my own family. I am going to try to get on disabiliby but probably don’t have enough credits either. Don’t they understand that I would really rather be working?!

    Reply
  • July 8, 2012 at 10:03 pm
    Permalink

    I was a CNA. Certified Nurses Aid. RA robbed me of that career completly. I graduated 2nd in my class. I was pretty pleased with myself since I went back to school after 15 years of being a stay at home mother of 4. This has financialy crippled us. We’ve gone through bankruptcy, trying to remodify our mortgage so we don’t lose our house. I’ve exhausted my unemployment and can’t find a job that I can do because of the limitations of my RA coupled with the fact we live ruraly making jobs scarce and far away.I’ve let my CNA license lapse. I’ve now decided I’m going to go back to school and try for medical assistant through a grant from the unemployment program. That’s if I’m approved. Fingers crossed, that I get the grant, and that I get through school, and get hired after graduation. I’m no spring chicken(46) and the RA isn’t that easy to hide. Wish me luck!

    Reply
  • July 22, 2012 at 9:02 pm
    Permalink

    I worked in a man’s world doing a man’s job. I loved it. I mean I really loved it, the work, the fact that I made a livable wage and my employer loved me. I worked in a chemical plant. I bet you’re wondering, ‘why in the world does she like/love working in a chemical plant/’. Maybe it stems from being so broke for so long. Now I could take care of my son, myself and my husband, who could never hang onto a job and who is now the ‘ex’. I was hired in ’86 and and promoted to foreman in ’89. Everything was going GREAT. The ex became the ex and I didn’t need help from anyone. Which is what I always wanted. To be self-sufficiant. I met a great guy, who actually had a job and two great kids, four and six. My son was now 12.I married him a year later and four months later my elbow became stiff and painful. I kept working. The pain went away, for a few days.I thought maybe it was just a strain from climbing ladders. NOT!Then my knee hurt but I kept working. Then went away. Then my shoulder hurt. I kept working. On and on. I kept working, taking care of my job and making life with my new, wonderful hubby. We finally went to a doctor who referred me to a rheumatoid arthritis specialist. Who diagnosed me with RA and told my new husband of six months that he was now married to someone who felt like she was 80 yrs. old. I had this disease for 19 yrs. But I limped around that chemical plant for eleven yrs. Finally I was offered a medical retirement or a separation pkg. I took the medical retirement and was awarded social security. I get monthly checks but it’s not the same. I miss my job and I miss the satisfaction of doing a man’s job in a man’s world making a man’s wage. Call me crazy…but I’d love to be back in that chemical plant. I could work cirles around most of those men and I was good at it. Thanks for letting me post this.

    Reply
  • July 22, 2012 at 10:27 pm
    Permalink

    Since the beginning of the year, I have missed 8 or more hours in each pay period. I try to make the time up if I can, because I don’t have any sick or vacation time left. But the reality is that I am so worn down from trying to get through my regular hours that I just can’t most of the time. I am so tired and sore, I cannot handle even minor setbacks anymore without falling apart. I thought about asking the doctor’s advice, but keep holding back. The problem is that if I’m honest, I would rather be @ home spending time with my family, and I wonder if it clouds my judgement on the issue.

    I have been told by my doctor that he would gladly write a letter to my employer stating that I need to take a rest break during the day. I also had someone at work suggest I work split shifts and rest in-between. I turned it down because it would take me away from my family, who I feel like I shortchange anyway. So much of my energy goes to the job, that I often have nothing left for them. I think that’s what I hate most about RA. Yes it hurts me, but it hurts my family, too.

    Reply
  • July 25, 2012 at 5:48 pm
    Permalink

    Luckily when I developed RA at around the age of 25/26 I had a heads up and knew what it was (my grandmother had it), so I wasn’t wondering for years what was wrong with me before seeking help. I used to be an archaeologist, spending a lot of time on excavations doing a lot of physical labour. Then on my last dig in 2000 something happened to my right knee. I thought I had twisted it and rested it for a few days…then my wrist went…then everything went! Unfortunately I wasn’t able to continue with my career as an archaeologist.

    I now work full time in facilities management for a building maintenance company. It is a desk job and a far cry from digging up skeletons in a desert, but it pays the bills and is something I can still keep on doing. My manager is very understanding and has adjusted my work hours so I can start later in the morning and I have a chance to ‘get going’. I am able to see our occupational health department if need be too. My job installed an external lift to the outside of my office block so I would not have to negotiate the stairs. Actually I think they may have been more concerned with me suing them if I fell down the stairs and they had not provided disabled access, LOL. I also get paid for time out to go to my hospital appointments etc. Eventually there may be the facility for me to work from home, but I hope it won’t come to that for a good while yet. I’ve moved house so I am a 15 min walk for me (5 mins for others) from my place of work.

    My colleagues are pretty understanding, especially with my time keeping if I’m 10 mins late one day or 5 mins another it just means I’ve found it more difficult to get going in the morning. They know I’ll always stay that amount of time later in the afternoon to make it up and they never complain. I often make jokes with them about staggering around like a 90 year old or show off by swallowing 8 pills at a time which invariably invites lewd comments, LOL.

    All in all I am lucky with how things have fallen.

    I still dream about digging up skeletons though…

    Reply
  • September 25, 2012 at 11:10 pm
    Permalink

    I was diagnosed with RA in 2007. I guess the good part is the initial onset was so aggressive the diagnosis was pretty fast. Here I am roughly 5 years later and my ability to work is just about done.
    I am a mechanic. My hands are killing me. My Rheumatologist has been after me to do something else for a while now. But what. I can type for a while. But really once your hands are done, what do you do?
    I expect to leave my job at the end of October of this year. I have recently started taking prednisone daily. Of course that cannot continue. I started with 5mg a day and now am up to 20mg per day. I also take Simponi/mtx. I do expect to cut out the prednisone once I leave my job.
    I had to sign my name today for a routine credit card purchase…. Wow, I watched my hand NOT sign my name I am not sure what that was. It won’t move like I need it to.
    My wife massaged my hands tonight, felt great, but did nothing for the joint pain or stiffness.
    Yea, the topic of this blog post hit home in a big way.
    I don’t post here often, but love this site.
    Regards,
    Ray

    Reply
    • September 28, 2012 at 9:29 am
      Permalink

      Good to hear from you Ray. I had the same exact experience this past week. I took the pen and my thumb just says NO and I had to hold the pen like a fist and I thought “I wonder if the salesperson thinks I always wrote this way…” Where is my nice handwriting?

      Reply
  • October 8, 2012 at 9:02 pm
    Permalink

    Hi,
    Yes, handwriting is terrible somedays and i always took pride in it.I have always enjoyed sending cards to friends a distance away, and look at the finished letter and think, i wonder if they notice and think i have just got slack.
    Giving up work is hard on self esteem, and its like admitting somethings wrong, but because i’m in my early 50’s , ex work people keep saying, how are you enjoying retirement? It makes me gnash my teeth as i didn’t retire, i just couldn’t do it anymore with pain and deformity in hands preventing me from doing my job,and wondering if my feet would just give way. My ESR was high and that also made me feel weak and vaguely unwell, that has improved since not working.
    I read other peoples stories and it makes me feel better, but sad that this is the reason we are all here, looking for understanding.

    Reply
    • February 11, 2013 at 11:05 am
      Permalink

      ~hugs~
      It is extremely hard for others to get it…kwim?
      My kids do dd and ds but even my Dad doesn’t…:(…
      Sad indeed isn’t it?

      Reply
  • October 24, 2012 at 8:50 am
    Permalink

    RA has turned my world upside down, side ways, and back again a gazillion times a day. My employer has been very kind, patient and understanding. But, it is reaching the point where he may no longer have the option of being kind and understanding. I haven’t worked since March of this year. They gave me a year’s personal leave. That was after I had used up all of my FMLA, holiday pay, and sick time. But, it’s a business and a business has to have people that can work and be dedicated to their job. My days are dedicated to medication, adjusting to new ways of completing tasks, and research, research, research. Our house was foreclosed; we moved from a 2000 sq ft house to a 1000 sq ft house. I am an arts and crafts person. I lost my studio along with the house. I have had to give away most of my supplies because there just isn’t anywhere to store 40 years worth of fabric, buttons, patterns, sewing machines, sculpting supplies,—– that really depressed me. So, RA has not been what I would call a positive experience at this point. It may be revealed to me at some point, but for today, I know that RA has taken away my life and my livelyhood. I WILL get it back—–it may not be in the same form as before but my life has to have a purpose. And I need a purpose to get out of bed every morning, even if it does take an hour! Have lovely day and may the sun shine upon you and fill you with the wonder of the simple joys of life.

    Reply
    • October 24, 2012 at 9:13 am
      Permalink

      I feel for you Joyce. Everything you said. I’m in the same boat. I have started school again to learn a new career because I couldn’t do the old one anymore. Hang tough, it’s all we can do some days.

      Reply
      • October 24, 2012 at 12:47 pm
        Permalink

        I am so moved by the resilience of people who post here. The devastation of RA is nothing short of a catastrophic tragedy in many of our lives. What we do from the point of devastation to rebuild our lives and remain positive is nothing short of miraculous. I am really honored to hear people’s stories. I also look for the positives and the blessings each day fully acknowledging the changes and limitations of this disease.

        Reply
    • February 11, 2013 at 11:01 am
      Permalink

      ~hugs~
      I just wanted to reply to your post as it touched me.
      <3
      Thank-you for sharing.
      My ds and I have moved from a three-bedroom to a two bedroom and now a one bed-room.
      I know how hard it is and your post was so "Inspiring"…
      I have RA but it doesn't have me…;)…

      Reply
  • December 27, 2012 at 11:00 pm
    Permalink

    When I read everyone’s stories, I do have to count my blessings – even given my own experience, it is hard to fathom what some of my fellow RAers have/have had to deal with.

    I was diagnosed around the beginning of 2012, but have likely had RA for anywhere from 2-5 years longer. Finally was able to start treatment about a month and a half ago – MTX (also have sciatica/neurological issues, hypothyroidism and some other “issues” we are still pursing… no rheumy yet).

    I’ve always been a type A person – full of energy, willing and ready to take on the world. I’ve been self-employed in one capacity or another for most of my life (I’m 41). As an artist/crafter from about the age of 20 to 26. Then switched careers and became a graphic/web designer. I’ve been running that business for over 17 years – along with continuing to produce hand crafts, opening and running an underground art gallery (and helping create an entire new arts district) with my ex-husband, putting on large scale political events, fundraisers, etc.

    Then things started to “slide.” I’ve had sciatic issues for years, they started getting worse around 2006 – 2007. I put it down to too much physical stress as my ex and I were trying to rebuild our house after Hurricane Katrina (which we had closed on April 1, 2005… April Fool’s day joke on us! And it was a fixer-upper to begin with).

    We split up. I realized I had less and less energy and more and more health issues, but attributed it to the break up, to Katrina (which actually likely is one of my “triggers” for the RA).

    Fast forward… a man I dated a long time ago came back into my life and we “got married” (thankfully, not on paper). I knew he’d had addiction issues in the past, but he came back to town seemingly happy and healthy with lots of plans (he’s a chef). Little did I know what was to come.

    Health issues got worse and so did he. He couldn’t get a job, couldn’t keep a job for more than a month, maybe two, at a time – with months of no work in between. He kept drinking. I enabled that (he is a master manipulator and I am hard headed and have a tendency to think I can fix people… btw, no more!), and I supported us.

    For the last four years as my health got worse, I continued to support us. I borrowed money so we could open our own little bar kitchen – he led me to believe that would make him happy. At the time that was my 4th job. I ran my own business, tended bar at two different places for a total of three days a week, did all the book-keeping, most of the shopping (on my scooter… regular scooter, not mobility!), cooked in the kitchen, waited tables, you name it. Forgot to mention that in June 2009 (the year before), my right knee went out for no reason. Our kitchen is what finally did in my back – it started locking up, I was in huge amounts of pain. But I kept working all my jobs. He kept drinking. He ruined our business (but of course it wasn’t his fault). I closed it down when I started having to cover the bills for the kitchen out of money I earned from other jobs… and frankly, I was too tired and in too much pain.

    He kept drinking, kept “looking” for work, kept maybe working a month or so here and there. By now I was starting to develop more of the classic signs of RA along with neurological issues and the sciatica. My hands and feet would be tingly/numb and painful. My sole treatment were prescription narcotics – I had no health insurance and while I paid out of pocket to see a doctor, I couldn’t afford tests and blood work through him. Managed to get a lumbar MRI – herniated discs, bone fragment pressing on the spinal nerve.

    I kept working, he kept drinking. More and more pain set in, and the fatigue. I’m still not sure to this day how I pulled it off. His other addictions included heroin and narcotics. He’d demand and/or steal my pain medication.

    Stupid me… sent him to jail once, he spent a month, I took him back. Soon after I was finally diagnosed with RA (based purely on now obvious physical symptoms) I kicked him out again. Still not really knowing what the diagnosis of RA fully meant, I did realize I needed to move to a cheaper apartment. Couldn’t physically accomplish the move on my own, had to get him to help (as I was also storing his things). He’d just “tried” to OD on heroin. Stupid me let him back in.

    That was in May of 2012. I applied for Medicaid as the state of Louisiana slashed the medicaid budget. Spent months waiting for Medicaid (just got it last week… tho still no details on exactly what I’m “entitled” to). Finally got in at a sliding scale clinic a couple of months ago and began treatment (tho I still pay out of pocket to see my original doctor, as one, he keeps very good notes and has a high success rate of helping his patients get on disability, and two) he treats me for PTSD and panic attacks and also prescribes my pain medication and my new GP does not appear keen on that, so best leave well enough alone).

    I had to quit one of my bar jobs, couldn’t do it physically any more. My “husband” claimed to be sympathetic (his mom has RA), but still has worked less than two months since May. When he was working, he spent most of his paycheck on narcotics off the street as I finally made sure he had no access to mine. Around June I entered what I now know was a full blown 6 month flare. But I kept working, kept supporting us, kept supporting his habits (his beer and whiskey and cigarettes cost me ~$400/month). He kept telling me how he wanted to take care of me, if he could just find a job. Meanwhile, he was happy to let me support us. He watched me work through horrendous pain for months while he sat on the couch and watched netflix on the computer. He helped around the house when he felt like it… not often. So I worked, I cooked, I cleaned, I did the laundry, I did the grocery shopping (and somewhere in there my scooter was stolen, so I did all the errands on foot).

    He’d go back and forth from being sympathetic to trying to one-up me on who hurt more (trust me, he only has normal aches and pains for someone who has worked in a kitchen for 20 years… otherwise, he’s an addict and obviously has some kind of mental disorder, but refuses to see a doctor… but accuses me of not letting him see a doctor).

    It became harder and harder to get my work done. My one bar shift a week took everything out of me. My business was suffering – from my health issues, and because I had to choose between paying rent and bills and taking care of his needs, and pay for my doctor visits and my medications instead of paying business bills.

    He mocks my RA. Tells me all he’s heard for the last 6 months is “Wha wha wha, all you talk about is your arthritis.” No shit, Sherlock… I am in more pain than I have ever been in in my life (and it keeps getting worse)… I work on a computer, but I can barely type, can’t sit or stand for any length of time, can barely focus my eyes.

    Yes, I’ve finally put my foot down and he is on his way out. It’s going to take a restraining order and an eviction notice. Still I work – 7 days a week. No matter how I feel. While enduring extreme verbal abuse. Now with side effects from the MTX and other medications (the MTX lays me pretty sick for about 3 days a week right now)… I am close to loosing my business. The pain isn’t as bad – right now thanks to Prednisone – but I still suffer flare ups all too often and the pain never completely goes away, it’s just more like a 5-6 on a daily basis instead of an 8-10 (except on flare up days).

    Sorry, I guess this was a bit more of a rant than “working with RA”… but it’s all tied up together. In a way, having survived thus far gives me the faith that I can keep supporting myself (thankfully at the moment I have a few friends helping me out a bit financially, and am running my own fundraisers.. but my family, a couple of whom are multi-milliionaires, appear to have turned down my request for help for a few months while I adjust to treatment) no matter what happens, no matter how bad the pain ever is, no matter the flares – because anything has got to be easier than working in as much pain as I’ve already worked with and I won’t be having to pay for him anymore and I know when he is finally out of MY home, the reduction in stress is going to make a big difference. It’s not going to fix the RA or take away the fatigue, etc… but when I no longer have to suffer the immediate consequences of the stress he causes me (“why won’t you give me $2 for beer, it’s just $2… and you know I’m in pain and I don’t get pain meds”) causing my back to lock up instantly, shooting pains down my leg, chest pains, etc… and that is just reaction to immediate stress, not even talking about the residual stress that is ever present in this house.

    So it’s going to be hard, but I’m tough… I’ve made it this far and I know I can do it.

    And I will listen to my doc and apply for disability… just in case.

    Reply
  • February 11, 2013 at 9:34 am
    Permalink

    I am not able to work.
    Some days I can barely walk.
    So forget running or dancing or walking for the pure pleasure.
    Dealing with Depression and other health issues.
    It affects how you feel about yourself and how you think others do.
    I hate asking for help and appreciate when someone offers not insists.
    If I say no I mean no.
    Adapting to this new me has been difficult.
    It affects what I wear. My choice of foot-wear and clothes.
    I am on a Disability.
    I worked until I lost my job. My company lost it’s contract and we were done a week before Christmas. Merry Christmas.
    I lived off my unemployment until it run out then public assistance and finally got my Disability.
    There are days that you don’t want to get out of bed.
    Pain and fatigue.
    This is not the Life I envisioned.
    I am single was married separated and divorced.
    Single Mom for twenty-two years.
    I felt like a failure.
    It’s all I can do to keep a roof over our head and groceries…
    It affects your ability to dress things like buttons or zippers, opening cans or lids, for me writing as it hurts sometimes just too much.
    I type two fingers on my right hand.
    Adapting.
    I would be afraid to put make-up on like mascara.
    Most things seem like a chore like a Mountain you cannot climb.
    I do however keep on trying.
    My kids call me Warrior Mom…;)…

    Reply
    • February 11, 2013 at 2:20 pm
      Permalink

      “warrior Mom” Loretta, Your post hit home. I too have RA, today I quit my job. I cannot do it. I went to my Rhuemy, she put me on Cimzia starting today, I hope it helps. My left elbow is so damaged, it barely moves, I have no strength in my hands, forget ever bending down to my knees. I haven’t applied for disability, but i will soon try. Your post encouraged me to keep trying. Thanks

      Reply
  • February 11, 2013 at 4:14 pm
    Permalink

    Thank you for the topic of RA and working. I worked full-time last year at a stressful job. Although I enjoyed aspects of my job, I believe the stress contributed to my first RA flare. I quit in June to look into what was causing my pain, and by July I could barely walk. I was diagnosed with RA in August.

    I wish I could still work. I am 49 years old. I feel cut off from the world of my peers, all of whom work. I am not at the point in recovery where I can even volunteer, my pain is so unpredictable. It is hard for me to understand how anyone with RA can work. I can only type for 5 minutes at a time. I can only sit for an hour at a time. I can only stand for 5 minutes at a time. I am just going to have to learn to accept myself as I am, whether I can work or not. I think life would be a lot more interesting if I could go back to work. But if that is not to be, I will read books, try to learn another language and find other enriching things that require brain power rather than body power.

    Reply
  • December 9, 2013 at 4:11 pm
    Permalink

    I was transferred to the mail and property room at the Prison I work at. I grieved the system and received an ADA accommodation and got my old job back. 🙂

    Reply
  • January 12, 2014 at 11:13 am
    Permalink

    My 22 year old son is do sick . He try’s to work for me part time. He has RA and fibromyalgia.
    He is down to 120 lbs and he is. 5’10 .
    He lays in bed most of the time and is in constant pain. The doctors don’t seen to be helping or care much. He is so smart but he seems to be losing his will.

    I’m at my wits end , it makes me so sad. There has to be something that can make his life bearable.

    Any thoughts?

    Reply
    • January 12, 2014 at 9:46 pm
      Permalink

      Bob, rheumatoid is a wasting disease, and we’ve heard of this happening before. Please tell your son he’s not alone. And that the doctors who don’t seem to be caring or helping just are not doing enough. I know it’s tough, but I hope you’ll keep trying to find a better doctor.

      It is very hard to keep going and even keep thinking clearly when you are in severe pain day after day. Even if the doctors can’t find the right treatment yet for your son to better control his disease, it is the right thing to treat the symptoms and help him be more comfortable. I hope you’ll be able to find a doctor with a more humane perspective on that.

      Your son may also need more emotional support than the family can give. He would probably benefit from meeting others with with RD who know what he’s going through, or a supportive counselor for a time (who knows about RD).

      Reply
  • February 21, 2014 at 1:55 pm
    Permalink

    I have RA and have been working as a nurse in a busy ICU. Most days I struggle just to get through. By the time my 12 hour shift is half over my feet and ankles are beginning to scream at me. I am finding it more and difficult to get my hands to do what they need to do. Things I never used to think about like opening packages of supplies, taking apart IV tubings and the latest frustration: Drawing labwork and puncturing/manipulating the blood vials. Even with my coworkers heping when they can I end up staying later than anyone else to finish the documentation required for my job. I need to keep my insurance to pay for my RA treatment but wonder how long I can keep this up while I search for a job where I can use my skills and knowledge but will be less stressfull for my body.

    Reply
  • June 15, 2014 at 11:40 pm
    Permalink

    I work as a school bus driver. I don’t know how much longer that will last. My RA has been real bad since it first started less than a year ago. My co-workers are pretty good about it but I’m scared about what I will do when I can no longer pass my DOT physical because my joints are hurting so bad. I can go out on a medical but my payments will be real small. I’m only in my mid 30s. I only know how to drive trucks and buses.

    Reply
  • May 24, 2015 at 10:38 pm
    Permalink

    This is an older post but while I was scanning tonight I read it. I am 56 and have had sjogrens for 20 yr and inflammatory arthritis for about 7. Started on plaquenil in ’10 and it worked well until about a year ago. Also in ’11 I started getting severe shoulder pain-one xray indicated “mild-mod” OA. I started getting cort inj in my ac joint every 3 month(max I could get) but then got inflammation in rotator cuff to the point I couldn’t sleep and lost range of mvmnt. I went on methotrex. in Nov’14 and it has helped but I don’t think I can “hang on” at work any longer:( I have 4 years til I get full pension, if I retire now I take a 20% penalty. My job is a desk job but my commute(by car) is min 80km a day which can be anywhere from 1-2 hours one way depending on weather. Tomorrow I talk to family doc about disability applic. There is 13 wk unpaid “waiting period” as I have about 6 hr of sick lve left. I am hoping she approves it and gives me 6 mon-1 yr on disab. I took 5 wk off without pay in winter and it wasn’t enough. I feel like a failure and my hubby is no help. I am sure he thinks if I lost weight(how when my ankles collapse?) and took his “supplements” I’d be fine. And as it has been said on this post, an “invisible” disease doesn’t help. And I am my own worst enemy I’d rather be thought of as lazy than disabled sometimes. I just advised my bldg.(wk) fire warden that I cannot do 10 flt of stairs when we have to evacuate. That was a toughtough thing for me to do. Felt like I was “coming out”. I feel (like another poster) that I give everything to keeping well enough for work but can do nothing else. Which is not at all like me, I was always work to live not the other way around.

    Reply
  • October 30, 2016 at 9:42 pm
    Permalink

    Great posts good info on RA

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *


“imaware™
    Advertisement
Would You Like Free Email Updates?
Stay in touch with RA Warrior.
We respect your privacy. Your email address will never be shared.