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Holding Down a Job and Lupus
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An_249880 posted:
How are you able to hold down a job? Diagnosed decades ago with Ulcerative Colitis (auto immune), then two years ago couldn't walk after getting out of bed, diagnosed with Fibro, I kept going back to the doctor...r u sure that's all that's going on, I'm so so tired, my mind is so fuzzy, can't remember things as well. (I'm ex military, with a can do attitude..I am not lazy!) Last August I gave up my 4 hr a day commute to a lucrative job, I was exhausted....in September wrists ballooned and excrutiating pain, terrible pain walking...sent to Rheumatologist, who by the way still has not committed to telling me what I have, although he has said, "I don't think you have Fibro." (It is my family doc that said my blood tests she took absolutely prove Lupus). He has me on Hydroxychloroquine, which I've been on for a little over a month now and I do see improvement however, still tired and I notice that if I have a couple of better days, I'm back down in bed the next, tired and hurting. I don't go back to Rheumatologist for another 3 months. How do you all make a living and cope with this, I've been in bed practically 4 months now mostly more in it than out of it. What employer puts up with this? I was stressed just knowing that I wasn't able to give my all there at the end of employment. Are you all employed? Are you working 5 days a week, 8 hour days? How are you all financially coping?

signed Frazzled
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lupylisa44 responded:
I have been on Disability since 2000. No longer able to work due to lupus.

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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lupylisa44 responded:
Sorry about the short answer earlier, I had a doctor's appt. and didn't want to leave your post without a response.

I was diagnosed with lupus 30 years ago while in college. I had to take a couple of semesters off to get my health in order. I graduated without any problems. I was able to work fors a long time without many issues. I would get sick a lot more than "normal" people but was still able to keep my job.

In 1997 I was bitten by a cat, which ended my life as I knew it. The cat bite caused my lupus to become very active and I started to get very sick. I would go into work on Monday and be okay for the most part but by Wednesday I was really having a tough time because I was exhausted! I would come home from work on Friday and go straight to bed and would sleep until monday just to start it all over again. It was no way to live! I applied for social sec disability but was denied.
I went back to work for a different company and luckily they offered short term and long term disability as a part of the benefits package. I signed up for both. When I started to get really sick again, I was able to take a couple of months off throgfh the short term disability to get better. Unfortunately, my lupus decided to attack my kidneys. I was unable to work any more. I then went on long term disability (throught my company) for which I was approved.

The disability company made me apply for Social Security disability to offset their costs. I was approved for both in 2000 (retroactive from when I applied) I have been on it ever since.

If you have a job that offers disability, by all means, sign up for it! Getting approved for disability, (especially social security).is extrememly hard, Not having a definitive diagnosis will make it that much more difficult. You will almost certainly be denied the first time you apply.

I haven;t been able to work for 12 years and don't see myself able to return to work anytime in the near future.. I was one of the "lucky" ones ( if you can call coming close to death with lupus lucky) who was actually approved for disability. but I had to have kidney failure to get it!

Good luck to you!

lupylisa
With love, with patience and with faith, we'll make our way.
 
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mirandaslair responded:
I work because I have to and that is my life...I have realized that I can not work more than 3 days in a row 8 hrs a day or I will begin to flare...I write my own schedule and take two 15 min breaks in my 8 hour day in which I am on my feet, lifting 50lb boxes and running up and down stairs several times a day...it hurts like hell and I go home and take Epsom salt bathes to relieve the swelling in my joints...I have found though that I am worst off if I am not working...those are the days I tend to not be able to get out of bed...pushing myself to with in my known limits I have managed to hold a 40 hour a week job, but with the consequence of not being able to have a life outside of work...I have no energy and I am in so much pain, I refuse to take steroids, NSAIDS, pain pills unless I absolutely have to...I wouldn't want my body getting used to the medication and then not working when I really need them...I have taught myself to meditate and that is what has helped a lot...I often have brain fog and sometimes I think to myself that I just can't do it anymore, but then I take a deep breath and look around and see what I have accomplished and turn it into something positive...I have six prescription medications I take daily, some I have to take twice a day and that doesn't include vitamins, but I manage to keep my head up high and push through it all proud of what I have achieved for the day...you take it one day at a time...so far I have made it 5 yrs and counting and I am very proud of myself for that.
 
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1stLadyDi responded:
Yes; holding down a job is tough. I am an Army vet & at times maintaining a "can do" attitude is sometimes challenging, but God has allowed me to overcome those challenges when they come. I currently work in a jail dealing with inmates. I am in charge of a shift, work the graveyard/midnight shift & we recently moved to 10 hour shifts. I am typically wiped out by the time I get off duty, especially after completing an entire week (40 hours). I am so blessed to have the rank that I do; I am able to flex my hours a lot and that has been my saving grace and I rarely have to get involved in use of force situations because I am the supervisor.

I do admit, though, that I have considered medical retirement on several occasions as I feel like I have no life after work because I have to spend most of my time recuperating. Thus, I don't have the time or energy to do much of anything else. It's a blessing to have my children at home to help out. I pray that God will give you strength as you continue to work and manage your disease. Take care.
 
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NicoleMolina responded:
I understand your pain. Still waiting to be properly diagnosed, but doc says it's a good possibility.
But day to day I have the overwhelming urges to call out of work but I know that I can't. On some level I'm too stubborn to let this beat me. I drag myself out of bed in all my aches and pains and force myself to get ready. I do work 5 days a week 8 hrs a day because I have to, I work at the state prison. Though my husband is very supportive and worries to death about me when I drive the 13 miles to work, I know that when I start getting the chest pain I pull over, wait for it to pass then continue on. I will admit some days are supper hard, but until the day I can no longer walk, I'll think about stoping. lol. Hang in there and just know you are not alone in this fight.
 
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1stLadyDi replied to NicoleMolina's response:
NicoleMolina, How do you manage getting through the day working at the state prison. Yes, that's a tough environment. I am always thankful every day (or night in my case) that is uneventful when I'm at working, whether in the housing units or booking area. Weekends are the most busiest because of people drinking hard on the weekend & driving, domestics increase, raids occur, etc... I know it's already tough dealing with this illness and to add working in such a hazardous work environment doesn't help matters, but we do what we do....and I do love my job. Interesting that you should mention suffering chest pain. That has been added to my recent list of aches & pains. The last time I had it, my rheumatologist thought it possible that it was pleuric chest pain. While he told me to go to the ER the next time I experience it rather than waiting for a doctor's appointment, I have to bring myself to doing so. I just got back to attending work regularly. Recent knee surgery contributed to the absence and I've been feeling pretty good consistently. It's almost like I was "normal," in spite of the issues I have. However, I know that it's my meds, primarily Methotrexate, that has been keeping my disease in check. Take care & stay safe.
 
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ssh49tn responded:
I'm not able to. I decided to take early retirement 2 years ago, & was going to work part time, but that was before starting to deal with the lupus issue. I finally had to stop working at all, except now & then I'll fill in for somebody, but usually only 1 shift. Just having my SS check isn't easy, but I manage to scrape by. I do have family that will help if I get in to a bind. But, above all, I rely on God to see me through. Some days I'm ok, then other days not. I have only been diagnosed with lupus for almost a year, & know very little about it. Sites like this one help educate me, plus I get encouragement from others. Since I'm already on SS, I can't apply for disability, but if you can, definitely apply for disability. Get a good lawyer though, 'cause they like to turn you down the first 2-3 times you apply. Usually the attorneys will waive any fees until you win your case. God bless!


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