working with Lupus

By Aunt Nise Latest Activity May 11, 2012 at 5:07 am Views 2,464 Replies 46 Likes 5

Aunt Nise

Hello, I am new here but I am trying to find out if anyone works having Lupus and if so how many hours? I have Lupus, pulmonary embolisms and APs and work a full time job. I am exhausted at the end of the work day and cant do much. The weekends are spent to resting? Thanks for listening.

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  • Melodys Blues
    Melodys Blues December 17, 2012 at 1:15 pm   

    I’ve worked for a health insurance company for 20 years and dealt with negative comments from coworkers because they did not understand my illness. I changed jobs in 2010 due to the Oil Spill in the gulf. I lost my Job after hurricane Isaac. Along with the joint pain I suffer from back pain from a fall during the hurricane. I didn’t qualify for unemployment or FEMA assistance. I’ve applied for SSD and waiting to find out if I qualify. I have so much respect for you all that continue to work and raise a family with this illness. Big hugs to you all!

  • Petra6
    Petra6 December 15, 2012 at 6:35 pm   

    Iam a single mom with 5 kids I always had something…but Dr.'s could never pin point what it was till 2011 when I haad theses 2 episodes that both landed me in the hospital…I could not walk,my left side was worse,I swelled up and had a hard time focasing,2nd time I was in I was brought by ambulance becuse it dropped my heart rate and I couldnt talk,walk or use my hands. They actually knew what was wrong but for some odd reason refused to tell me for days ..they instead insisted on doing all these tests..when they set up more tests and still wouldnt tell me anything ..I got upset,reused the tests…demanded to know and see all the records..thats when they told me I had Lupus…now i dont know why they wouldnt tell me..it has been a hard and difficult road. Every day is a challenge…I get little sleep,little help, I cant afford to go to the Dr.,all I take is arthritis pain meds..like over the counter stuff…we have no free clinics here and the biggest town is over and hour and a half away…I work 40hr + becuse I have to…and it gets extremley hard..I work at a steel plant..lifting heavy stuff..and sometimes it is so tuff to evan do an hour… I sometimes go sit in the bathroom and just sit there and cry,they are very strict there on your time..i have never evan come close to being fired before,I have always been a hard worker…but becuse of this disease iam afraid I could be…I just want to lay down and give in. I come home from work and theres homework,supper,laundry(and u can imagine with 5 kids!!)and it never ends. sometimes I dont get to bed till 1am or later and getting up at 5am it awful.
    The headaches are insane,the muscle pain horrible,my hands will like freeze up,my teeth hurt,my ears hurt,my skin…it sounds as if getting any disability help is a laugh…what on earth do I do? iam still paying off the hospital bill,ambulance stuff…ooh and my hair seems to be falling out more and more. Iam behind ineverything. I get no child support becuse we are still going thru the divorce and He is allowed to not pay… becuse there is an upcoming court date that He haas gotten continued several times…stress from this all seems to cause my symptoms to be much worse…help!!

  • Petra6
    Petra6 January 16, 2013 at 10:21 am   

    Well thank you! Nice to meet you! I have to push myself!:) otherwise I'd just give in to how I feel and that's not get up.

  • Petra6
    Petra6 January 16, 2013 at 10:21 am   

    Well thank you! Nice to meet you! I have to push myself!:) otherwise I'd just give in to how I feel and that's not get up.

  • Dickeymilwaukee@wi.rr.com
    Dickeymilwaukee@wi.rr.com May 29, 2012 at 12:35 am   

    Hi~ I'm a new here..THANK GOD I found people that understand what this hell is like..I was diagnosed in 1982..I was in full blown kidney failure and spent 2 months in the hosp. with 2 small babys at home..I was then granted SSD until 2003..when I went into remission..SSD kicked me to the curb..NO meds..NO ins..I rely on the Free Womens Center here who have been wonderful to me but NOT able to run ANA's because of the cost of the tests..In Dec of 2011..The pharmacutical comp..no longer gave out meds to the free clinics due to government crack downs..I'm crashing and burning slowly..
    On July 26.2012 I finally have another court hearing for my appeal for SSD AGAIN..but because of lack of medical documentation except for what the clinic has and past hosp and ER visits..its NOT looking good for me..My attorney who speaks to Drs and nurses in seminars will represent me..Wish me luck..cuz I NEED MY MEDS..I can't afford them out of pocket on a prt. time job..TY

  • corina82
    corina82 May 27, 2012 at 12:45 am   

    Hi everyone my name is Corina I just turned 30, and I was diagnosed with Lupus this year. It was very hard because my mom also has Lupus and I see what she through, now I find myself in the same situation. I hurt so bad, sorry If Its To much Information but sometimes the water from the shower hurts me…it a shame to say but even my bra stap! i find myself hiding from the sun, wearing long sleves in 120 degree weather. I still need to learn alot about this illness, looking for advice and more knowledge, thank you for listening! look forward to ur responces.

  • Dr Gary
    Dr GaryCA May 22, 2012 at 6:31 pm   

    HI!

    This is a great idea for a discussion. Sounds like you really pushing yourself hard. Hope that you are getting rest and lots of support.

    Gary

  • LadyTech
    LadyTech May 22, 2012 at 5:09 am   

    I worked 40 hours a week for years, and yes at the end of the day I am so tired. But like others I have not just a great husband, but amazing kids. I was diagnosed in 93 so my kids are very aware and so wonderfully helpful. Unfortunately my mom passed away from complications of her lupus (kidney failure) in Feb 2011. About 2weeks after, I went into a severe flair and have only been working 2 days a week since then. Right now I am covering vacations and so I'm back to 40, and lord help me I'm sooooo exhausted, lol

  • ImaEva
    ImaEva May 22, 2012 at 9:43 pm   
    Edited May 22, 2012 at 9:47 pm by ImaEva

    My mom passed in September 2007 from Lupus related stroke, and heart aritimia. Spelling is the pits tonight. Why don't we have spell check. lol. I feel for you. I tried the going back. You are so stressed because you haven't had time to grieve yet, and the added stress. I will wish you all the best. I know they say time will make it better when you lose someone. Really they should say the ache lessens. It took me and my daughter 4 years to go back to the resterant that we used to take her to. March 2008 is when I stopped working. We both know the sadness of losing a loved one to this battle. My mom used to tell me daily to stop working. Now I wish I could have gotten back the hours that I spent at work, to spend time with her. I stopped working so my daughter would know me, and to give me more time to be here for her. The financial struggles you go through without the added income are only painful for a while til you figure out what is really important must halves, in your life. What I gained from giving myself more time is priceless. I will slow this disease down by taking care of myself…

  • jujubeee
    jujubeee May 23, 2012 at 12:03 am   

    ImaEva, I also lost my mother in September 2007! Mine had a massive coronary one morning and that was it.

    I did just like you. I eventually was able to bring my office HOME and work at reduced hours. There's no way I could even fathom punching a clock again. That boat has sailed. lol. And your right, it kind of all works out. I much much happier at home and I'm not as sick. NOT going out is a real blessing for me being very photosensitive.

    About losing a parent. Your right about that too. It never goes away, just less intense I guess. I like to think of my mother now as free from her illness, trouble breathing and holding on to the wall to walk no more; with a free spirit able to finally enjoy again in some way. I miss her. Sometimes I hear my voice sounding just like hers and it makes me realize that part of her does live on in me. That gives me a strange peace.

    I have a grown daughter and an 11 yr old son. They keep us hoppin, don't they?

    So what's your story? How long have you had lupus?
    Nice to meet you, Love and Hugs, Julie

  • Dr Gary
    Dr GaryCA May 22, 2012 at 6:32 pm   

    Hi Lady Tech,

    Nice to meet you. You have a great family! I lost my mom in 2010. It's never the same without your mom, right?

    Gary

  • cslush68
    cslush68 May 22, 2012 at 12:19 pm   

    LadyTech, I'm so sorry for your loss… I too lost my mother some years ago and the stress of such a loss is enough to cause a flare.

  • LadyTech
    LadyTech May 22, 2012 at 1:37 pm   

    Thank you

  • Jeanne K
    Jeanne K May 21, 2012 at 12:29 pm   

    Hi, I'm new here but wanted to share that since I was dx'd I worked full time till I hit about 55. Now I work full time helping my daughter raise her 2 autistic sons. During the school year it is not too bad but I am dreading summer break. I am tired all the time also. but I pace myself. I have Lupus, RA, Sjrogdens, Raynauds, Crohn's and Kidney, liver and Heart problems.
    Last week I decided I was going to go off all meds except for pain and am going to tell my dr on my visit this Thursday. Am I being selfish? Please let me know what you think!

  • CMN2012
    CMN2012 May 26, 2012 at 11:25 am   

    Hi. I am new here too. I have been on and off the medications, both under doctors supervision and not. All I can tell you it is really rough, and can be dangerous because it can cause a big flare. I am currently off everything, with my doctors consent with the goal of seeing what is going on in my blood with out meds. I have to tell you I never thought I would say this, but I want the meds back. It has been awful. I agreed to try it so that we can see what my meds are doing, last time I agree to that. If you plan on coming off your meds, I would talk to your doctor, and plan how to do it safely. Some of the meds need to be tapered so that you do not have horrible side effects. In your post you asked if it is selfish. I do not think you wanting to be med free is selfish, my concern for you is that it could be dangerous without a good rheumatologist supervising it.

  • mariewilcox
    mariewilcox May 23, 2012 at 12:11 am   
    Edited May 23, 2012 at 12:16 am by mariewilcox

    will i have lupus and have been on and off my meds for about 11yr now and not a good thing to do .

  • Lovemydoxies
    Lovemydoxies May 18, 2012 at 9:24 pm   

    I was diagnosed 16 years ago. I work about 60 hours a week and I do get very very tired some days. I think the difference is that I absolutely love what I do, I have a wonderful husband who helps at home so we work together to get things done and then we sit back and relax together. My husband and I have started living on his paycheck alone and putting mine into the bank. I know that I won't be able to do this forever, but I plan to as long as I am physically able.

  • halfstep
    halfstep May 23, 2012 at 7:57 am   

    I was incouraged by my Ins Co to go on disability 4 years before I finally did. I'm a hair stylist and LOVE what I do, but it got so I couldn't be realiabe. I would be booked 5 weeks out, have a flare, and have to call everyone & I felt so bad about not being able to take care of business. I still miss working SO MUCH. I start Medicare in Sept. I too have a woderful Husband & know I'm blessed

  • Pinkcheek57
    Pinkcheek57 May 23, 2012 at 8:38 am   

    I was truly a" work ahololic" and found it difficult to stop being Cardiac nurse in the hospital.
    After , awhile I learned to accept and found other ways to honor my profession and do what I love.
    When you are comfortable and well enough schedual regular social times with individuals in your profession. Perhaps, you could get a chair and do a cut or color once and awhile.
    Maybe now is the time for the hobbies you didnt have time for before.
    Prayers and hugs
    Pinkcheek

  • halfstep
    halfstep May 23, 2012 at 2:03 pm   

    I am doing some hair on the side, lots of consulting—it's been fun—-I love doing color, helping a few girls new to the bs.

  • ImaEva
    ImaEva May 22, 2012 at 9:45 pm   

    Very smart. That's what me and my husband did. I am thankful. It made the switch from working to disability not so difficult.

  • Phonse65
    Phonse65 May 23, 2012 at 11:11 am   

    I wish you God's Peace my friend!…>jusy alec

  • mygian
    mygian May 18, 2012 at 12:36 am   

    I have been diagnosed with lupus last 2008 and until now, i am still working. with all the support that i get from my family, friends and colleagues, i don't think that my sickness can prevent me from doing what i want and what i can do. i will just let time run its course. but for now, i want to enjoy my life to the fullest.

  • OneHippieChick
    OneHippieChick May 18, 2012 at 12:34 am   

    I work full time as well, at least 40 hours per week. I am currently working as a hospice nurse and have a large territory to cover so I drive at least 5-6 hours per day. I was diagnosed with Lupus in 1985, Fibromyalgia 5 years ago, and systemic vasculitis 2 years ago. I've noticed now that I've gotten older (47), that I tire very quickly and have considerably more pain. I continue to do what I've always done though, crafts, gardening, etc., because I am that stubborn lol. With gardening, I can no longer do stuff like mow the grass, run the weed eater, or tiller, and I have to stop and rest like every 15-20 minutes. Same with stairs - I usually have to stop and rest midway up if there's a lot of stairs to climb. So yes I muddle through the fatigue to work and garden, but with the economy the way it is, I don't have a choice. My husband is a huge help with everything, including housework, but he has serious chronic problems as well (cancer survivor for 28 years, but left with chronic headache pain and fatigue from the high doses of chemo and radiation) and works full time too. We both pretty much crash after work each day and try to get the house/yard/garden stuff completed on Saturdays. At least we understand each others fatigue! :)

  • Cjakes
    Cjakes May 26, 2012 at 11:45 am   

    Hi OHC, I have the exact same problems. I was actually told by my doctor though that I was not allowed to do stairs anymore. I can't mow our lawns either, it hurts my hands not to mention the exhaustion. My wife and I had to move our bedroom from upstairs to the 2 bedrooms downstairs. Our 16 yo daughter did most of the moving since she got the entire upstairs (full length of the house) and she got our bedroom furniture. My room is on one side of the bathroom and my wife's is in the other bedroom across from mine (as they are both small bedrooms. I use a power-wheelchair some days too. I loved what I did too and worked 2 jobs for the longest time. My doctor told me to stop working 2 years ago but I didn't do it until last August. I was so afraid of not getting Social Security and not being about to survive. I stopped working Aug. 24, 2011, applied for SS in Sept. 2011 over the internet and was approved in Oct. 2011 and got my first check in March 2011. While I really miss working because I was in the healthcare industry, I feel much better and can rest more. I still feel sick and have flares and am tired just about every day, but I can lay down since I'm at home. The money is not an issue like I thought it would be since I've worked since I was 16 and stopped when I was 50 so I had a good amount of disability pay built up in SS. My wife is sick too, so I understand that part of your life too. She has Bi-Polar disorder, Diverticulosis and was just diagnosed last week with Fibromyalgia. We tag team everything and our awesome daughter helps us a lot. She is such a huge blessing. If you feel like you are living to just make it to work, then it is time to quit. I was starting to go to bed earlier and earlier to try and have enough energy to work the next day. My life consisted of waking up, dragging myself out of bed, going to work ( on no pain meds since I worked in healthcare, not good to be on morphine and valium doing that job) worked in pain and exhaustion, came home, ate dinner and went to bed to start all over the next day. That is when I knew is was time to stop working.

  • SherLambert
    SherLambert May 17, 2012 at 11:40 pm   

    Yes, I work 40 hours, sometimes with mandatory OT and keep my house up. I'm in a constant flare because of it, but I will not stop and continue to force myself, especially in this bad economy. I won't use FML (at least at this point, too dang stubborn) or use my lupus, MCTD, fibro, CHF, Hashimoto's, OA, possible Sjogren's, thrombocytopenia, pleuritic chest pain, etc. as an excuse. Yes, I'm exhausted and pretty much in a constant flare, but there may and probably will be, a time that my body will crash and that won't be an option. I'm in the worst flare ever in the 9 years since I've been diagnosed, so who knows if this is the beginning of losing my independence? I have no clue, but I will force myself until I can't force anymore. It's just the personality type I am. I have lupus; lupus doesn't have me :)

  • ImaEva
    ImaEva May 18, 2012 at 8:48 am   
    Edited May 22, 2012 at 9:46 pm by ImaEva

    I stopped working 4 years ago. Its a difficult decision to stop being "Super Women" that the term me and my councilor came up for while making my decision to stop working 55+ hours plus drive time. I was a General manager and on my feet til the time I left work with maybe and hour in the office to take care of paperwork. I drove 45 min to work everyday and 45 min back. I was crawling out to my car when I was done working barely able to walk and had to sleep for an hour before attempting the drive home. I fell asleep several times on the drive home. I was getting cortisoid shots in my knees. I have worked for 15 years. The thing about Lupus is it doesn't give you a road map and tell you what it will attack next. For all you still working start cutting up credit cards, cut down on bills. For a year and a half me and my husband lived on his $700 a month. From $2700 a month to $700 is a major reality check. I had to let go of my pride and ask for help for the first time in my life. (DHS-Food Giveaways-Food stamps). My biggest worry was medical coverage. The only way I qualified for medical was by being listed as my husbands caretaker at DHS. The day I walked out I had worked 75+ hours plus drive. I had a new area coach who was not supportive of my Lupus fares and me actually taking my sick time and vacation time. I guess what I am saying its a hard decision and I know the pain the rest of you are going through. Some time in the future it will not be a mind over matter it will be a necessity if you want to stay alive for say your 10 year old.

  • ImaEva
    ImaEva May 18, 2012 at 8:51 am   

    15 years after first liver failure, 10 years after diagnoses from kidney failure.

  • mygian
    mygian May 18, 2012 at 12:27 am   

    I certainly agree with you. For me it is just a mind over matter thing. though I have lupus but it does not control me and I can and will do what I can to keep on doing things while I still can.

  • broller
    broller May 17, 2012 at 4:59 am   

    i did up until about 3 yrs ago then i had a really bad time with flares and so on.i ended up leaving and got my disability.it was hard i was the same exhausted and couldnt be cuz i had a 4 yr old to take care of. it was hard cuz i was going through a nasty divorce too at the time and my employer was not helping.they knew when they had me that i had lupus have always been up front with it. worked over 5 yrs for them with no problem.once in awhile miss cuz of it but not a lot.thenthey started being ignorant tried to go part time and other stuff but they gave me a hard time

  • Babs68
    Babs68 May 17, 2012 at 12:01 pm   

    Unfortunately I was diagnosed 6 years after I worked so I cant get any disability. I find myself having difficulty just keeping up with the house work.

  • kkellyb
    kkellyb May 16, 2012 at 9:33 pm   

    Hi I'm new here too. I was laid off form my job last Nov. The company was "downsizing" but I know it was more due to missing much time from work. I have been working since I was 15. I rearly missed time form work. But even before being diagnosed in 2009 I noticed I was missing much more time from work then I wanted to admit. I'm still looking for work and at my age (47) the leads are few. I'm hoping to find something part time to help with the fatgue and flare ups.

  • jmes
    jmes May 16, 2012 at 11:44 am   

    i was a full time optician for years. i had to quit a year ago. the stress and time away from home & family was too much. i was the only optician in a private practice so i could never be out! toooo much on me physically and mentally. i have a degree in education so i am now substitute teaching, i can work when i feel ok. good luck with everything…

  • Susie Sunshine
    Susie Sunshine May 16, 2012 at 10:55 am   

    I posted u a message. Then I found this pg. Im new. Don't know much about this yet.

  • Pyewacketcat
    Pyewacketcat May 15, 2012 at 8:53 am   

    I have had to cut back on work too, I used to groom 10 to 12 dogs a day,now I do 7,and it drains me, I have to go home and nap or at least rest…my days off I have to catch up on the things I have let go during the week… diagnosed months ago,but have had this going on for 4 years or more, took them this long to get it right… now ,on pain meds for a bad hip,going to be replaced soon,and getting through the day is harder and harder for me.

  • NannaPat
    NannaPat May 14, 2012 at 9:45 pm   

    HI I'm new to the discussion board but I have Lupus,Raynauds,Sjogrens and Severe fibromyalgia and I work a full time job as well. I was working a 80 hr pay period but I am down to 64 hr a pay period now. I am a registered phlebotomist and it's all I can do to complete a full 8 hour shift. I can't afford to quit and I have considered disability but just can't seem to make that final descession. any suggestion would be greatly appreciated.

  • ImaEva
    ImaEva May 18, 2012 at 8:58 am   

    Look on the Disability web site and make sure you fit the critiera's before filing. That was another reason why I waited. Most people are decline (like myself). I got a letter in the mail that said "We know your in Pain" but that doesn't qualify you for disability. I reapplied and won with the help of Dale Kildee's office in Michigan. The wait tax you and your family. You stop work to reduce stress with the hope the flares will end or that you will feel better. The stress of the new complication of not having money to pay your house note, put food in your daughter's and husbands bellies. Worrying that someone is gonna come in the middle of the night to take your home, car etc.. it exhausting. If your dealing with an employer's Short or Long Term disability program you pay into (Sedgewick) you get to deal with them saying they lost your paperwork, couldn't get your doctor to send in paperwork(lies). The stress will have you going crazy on top of everything else. Put 1 1/2 of money aside if you can. Be prepared to lose your health insurance if company based. Plan

  • magtim
    magtim May 14, 2012 at 1:09 pm   

    Hi, I also work a minimun of 50 hours per week. Extremely exhaused nearly every day and must push forward, I can not afford not to work. I give all the energy I have to working, then the weekends and evenings are resting. I've considered disability, stepping down from a managerial position (less stress) but can't seem to make the decision. Today is particularily bad; didn't sleep well last night and faced with a foggy head. I am married, with step children and a very demanding career. Wishing you some relief!

  • kpeachy
    kpeachy May 14, 2012 at 12:46 pm   

    I work 40 hours a week but I am self employed, so it is on my watch, not the 9-5 watch. Luckily, my husband's job takes care of our health insurance. I tried working a full time 9-5 job a few years ago for about three months and I was completely exhausted. Never again…

  • Finnlee
    Finnlee May 12, 2012 at 10:20 pm   

    I've had a lupus dx since 1981. I have 2 grown children. When they were growing up, I worked part-time as an Optician. Eventually I became a full-time Optician working a minimum of 32 hrs per week to keep my health benefits. On days that I did not work, I HAD TO REST to have enough energy to work again. It was a struggle to just get through the day. Eventually it just became WAY TOO MUCH for me to handle with the debilitating fatigue. I am currently disabled. I miss my customers IMMENSELY and interacting with people. I give you ladies alot of credit for working outside the home, especially when you have small children. Adults don't understand the RESTING PERIODS & it's harder for children I think. ~ You are not alone Aunt Nise :)

  • Kiki5
    Kiki5 May 15, 2012 at 5:30 am   

    I am convinced that I had Lupus for a LONG time before the diagnosis. I worked and had 2 active kids and a husband that traveled for his job. I just thought I was tired and pushed through the pain…now I am paying for it with back problems, joints, etc. I think if I had been diagnosed earlier I would have taken better care of myself knowing that I could get progressively worse as the years went by. I know it is hard for kids to understand and I am glad yours do but please find your limitations and stop when your body says to.

  • Finnlee
    Finnlee May 15, 2012 at 6:27 pm   

    Thank-You for your response Kiki5, It sounds as though your work, plus raising your children and not knowing about having Lupus was very hard on you. I knew I had Lupus & was raising 2 young children and it was VERY hard, no matter how good I tried to take care of myself. My children are grown now. I think they were scared when they were little & though they may have tried to understand, they did not. I'm still not sure they do. I will try to take your advice and listen to my body. Actually, my body has become quite a dictator. I just make the best out of what I have to work with & count my blessings. Some days it harder than others as you know:) God Bless you & take good care:)

  • SoFlaGirl
    SoFlaGirl May 11, 2012 at 7:08 pm   

    Hi Aunt Nise, I have to work 36 hours minimum (usually 40-45 hours) or else I dont have medical insurance. On my days off, I wake up early, walk and feed the dogs and go right back to bed :-). I'm lucky enough to have to minimal disease activity right now though( after 6 years hard work by me and my doc), so I cant say I would be able to work full time in your shoes. Good luck to you.

  • It's still me, lupus has not take over
    It's still me, lupus has not take over May 11, 2012 at 3:57 pm   

    I work also. I work a 40 hour week and I have 4 children that are in sports and 3 of them are girl scouts. I am constantly running yes I am tired but I press on. It is not easy but it is well worth it. And when the weekends come if I am to tired to get up and get out my kiddos understand,

  • Dr Gary
    Dr GaryCA May 22, 2012 at 6:30 pm   

    What a great member name. You are totally empowered! Nice to meet you!

  • brendar1618
    brendar1618 May 11, 2012 at 7:20 am   

    Yes, Aunt Nise I work also. I can't afford not too. I 'm like you most days I come home and I am thoroughly exhausted. Sometimes if I can take a nap it seems to help. I understand about the weekends also, I was off last weekend and we went to dinner friday night and then I slept the day away most of Saturday and I felt a little rejuvenated for Sunday. I look forward to talking to you again soon.