Lupus Community

I have been on Disability since 2000. No longer able to work due to lupus.

Lupylisa

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

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.

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.