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Work and Lupus
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I was diagnosied 1 week agao today after a painful 4 months of having no idea what was wrong. 4 visits to 4 different ER's and 3 different drs trying to get to the bottom of this.
I currently work for Target as a front end manager (handling all the cashiers and guest service). I work at least 40 hours a week. I'm basically the person who takes care of the guest if they need someone to yell at.. I'm walking throughout my entire shift. It's really taking a toll on me. By the time I come home to my second floor apartment I can barely make it up the stairs. Every other weekend I am off of work, with the other weekends being a 6 day stretch without a day off.

I am concerned for what may happen further down the road. I am 30, no kids and living with my boyfriend. We are already living paycheck to paycheck so I can't quit my job. But I know it's only going to get worse with time. Every book or website I read says, "try working from home". This is impossible when you work in retail. Plus, come next month it's only going to be more demanding with Black Friday and Christmas coming.

Has any one else had this in their life? I am at the end of my rope trying to figure out what to do.
Posted on 09/27/11, 12:53 pm
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Reply #1 - 09/27/11  2:18pm
" I definitely wouldn't look at it as getting worse. You may be pleasantly surprised at how worse it doesn't get. With the right treatment and staying active, I think you'll have good results. While there is no can certainly stabilize the symptoms and kind of slow down the disease process. Perhaps though, you may need to find another career path. Do what's best for you...but, I highly discourage sitting down and letting the disease get you.

Hope you figure it out...good luck "
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Reply #2 - 09/27/11  5:23pm
" There are good and bad days with lupus. I work between 40-60 hours a week and do really well most of the time. This past week I worked almost 80 hours and had to use a scooter to help me, but I did it. The doc told me it is all about conserving energy. . .don't get discouraged. I have been diagnosed for 3 years and this past week was the first that I had to resort to a scooter. While I thought I would be humiliated, people were wonderful and helped. I don't think any of us know how to plan around this disease. It is unpredictable. Most of the time, no one would have any idea that I have lupus. But, finding balance between working, family, school, and everything else is hard.
Consider looking at jobs that are a little less physical if you can. While you may not find something right away, it is fine to start thinking about ways to slow down how much wear and tear you put on your body on a daily basis.
Good luck! "
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Reply #3 - 09/27/11  8:46pm
" Hi, Vanessa, I completely get what you are saying. The short answer is: our bosses do not care in the larger picture. They will nod and ask you how you're doing, but if you can't work, they'll replace you eventually. After the reality of realizing that, then we can proceeded with how life is going to be. I also am in the same moment of my life. I do feel a little bit trapped, because I'd love to take off a few months to take care of myself and reduce my stress and get my head around how life is changed forever. But I can't. I'm afraid of losing health insurance and not having any income. I don't even feel comfortable using my vacation time, since I had been out so often due to hospitalization or fatique/pain. I spent last week just crying and telling everybody what was going on, so they can share ideas and possible solutions. Lots of people do care, but when it comes to work, you're just not going to get the sympathy you need. You come to work, and if you're not coughing, crawling or limping, they think you're slacking. I do suggest talking to HR and your immediate boss to let them know what you need longer breaks or a chair, in case you are lightheaded or are in pain. There is no shame: its important to let people know when you feel sick, because people just can't see it. I hate that I have to publicize my illiness in a way, but , if I don't, and I have a bad day, it just looks like I'm not working hard enough. So I literally have to remind my boss that I am not having a good day. He tries to be sympathetic, but he just wants the job done. So, try your best to get as much support as your need. Everyone knows at my company what's going on, but there are limitations, they will tell you how to take leaves of absence. If you stop working, there's no money, and the only solution was that I take a leave of absence. I don't want to do that unless i'm really, sick and I have no choice. So we are just going to be tough. If you need another job, start now. If I were you, I would try to find a job with less stress, and one that you can sit in one place. As for working from home, if it was so great, wouldn't everybody do that? I'd be so annoyed if I read that. LOL. All I can say, disability did come across my mind, because I felt like I was dying last, but I just have a feeling you have to be on the verge of being on your actual death bed before they give you disability. Anyway, I know that its been a few months of pain, but it does fluctuate. The pain you feel now, may change. I've gone through days that I feel absolutely no pain or fatigue. I didn't realize that, until the meds kicked and and started to work. So, don't worry, youll feel better somedays. "
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Reply #4 - 09/28/11  8:17pm
" A diagnosis may be what you need to get you properly medicated so you can work with less pain and symptoms. I agree that a ton of hours on your feet when you aren't feeling well can take a toll on you, but just know that you are now on a path that may ultimately help your health situation. Many people with lupus find ways of working fulltime with little or no disruption, and this just might be the case with you. You are young, and good work for a big company and being that they have a well established HR department, you have that on your side if your condition places limits on what you can handle on the job. I do recommend two things that might help your situation....start thinking about a job you can look into down the road that would place less physical strain on your body...who knows, it could be within the company you work for. The second thing I would recommend is having your doctor write a letter on your behalf. Later if needed, you can use this to prove to HR that you have a documented physical limitation. They may be able to work out more frequent breaks for you, the use of a scooter to get around, or some other more ergonomic type of aid that could help get you through the day. The other reason I mention this letter is because later if you need to file for disability, you have on record that your doctor is documenting your date of onset for the disease, the symptoms that you have and how they effect your work situation. Unfortunately for me, I could no longer keep working in any capacity in 2008 and the letter my doctor wrote to my employer actually won me my SSDI case...well at least that's my opinion anyhow. I really believe that having documentation aided my case. It set the tone when they told me that I stopped working for other reasons that I had a medical person telling me that I should stop working and why. Anyway, I wish you the best of luck in your situation. Take care of yourself and please lean on us here if you need anything!

Kristine "
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Reply #5 - 09/29/11  1:08pm
" thanks everyone. I have filed for FMLA with my work, so if I miss work I won't be worried about being fired. My HR manager has actually been the most understanging of whats happening. My imediate supervisor could care less. She just sees it as I can't (or won't) do my job. She keeps giving me more and more to do then calling it out in front of everyone over our walkies that its not done. It's very embarassing and of course, more stressful.

I would like to look for a less physical job, but am worried about being without health insurance. I'm already so far in medical debt. "
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Reply #6 - 10/02/11  5:23pm
" Hi, I was diagnosed with lupus 3 years ago. My work gets very busy in the summer time but unfortunatly this is when i usually feel my worst. Lucky for me I have a very understanding boss. She offers to cut back my numbver of shifts or the length of them whenever I need it and is very understanding if I need to call in sick or go home early. My co workers are always willing to cover a shift for me. I know I am very lucky to be in this situation, as i would probably not be able to work at all if my boss was not so understanding about my health but i know I probably wont be so lucky at future jobs. I hope everyone can find the st5rength they need to do what right for them and not feel guilty about not being able to do everything you could do when you were healthy. "
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Reply #7 - 10/07/11  7:48pm
" It will get easier! Hang in there! I am a single mom of 2, 4 and 1!
I found that some employers are okay with it and let you take time off work for appointments... Others don't :( I am very lucky I now work in the hospital and my boss is a nurse! She is soooo understanding! Try looking for a new job just don't quit until you find something else, something that isn't on your feet all day and NOT 6 days straight! I used to do customer service and it killed me being on my feet all day. I am very grateful for my job now
Hope you get some relief soon! "

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