Hello everyone, my husband and I thought it would be a good idea to get involved here to get some extra support and knowledge about living with lupus.
My name is Kim, I'm 22 and I was diagnosed this last september. I actually felt the symptoms on a camping trip. All the sudden my joints hurt so bad, I could barely lift my arms up over my head. This was all very strange to me, because I'm an athlete and I know what muscle pain feels like and this was nothing like that. When we got home I started putting all my symptoms together, that I had blown off thinking one had nothing to do with the other. My hair loss, joint pain, exhaustion, butterfly rash. I work in the medical field and I immediatly started searching the internet about Lupus. I called my PCP and asked her to test my ANA, a few weeks later it was positive and I was on my way to the rheumatologist. It's been a slow process of observing me and making sure that we have the right diagnosis. I'm now on Prednisone and am starting Plaquenil this week. My ANA is 1:1280 and my SM/RNP is 6.00.
My biggest issue is that I work full time because my husband is finishing up school. Every day it is getting harder and harder to keep up with my full time job. I sat down with my boss and explained everything to her, telling her that this disease will cause me to be absent from time to time since some mornings I just can't pull myself out of bed. I asked her if there was any flexibility with hours or anything like that, and she said no and that I should "really think about if this is something I can do or not" I asked her if she wanted any notes or information from my doctor, she said "no, I believe you" So I just carried on. Well that was about a month and a half ago, and last week she sat me down and wrote me up for being absent too much!!! :cry: So i'm in a very difficult situation right now. I work full time and need to make full time money in order for my husband to continue with school. I also carry our health benefits, so if I were to leave my job we would lose our health insurance. I know that it wouldn't be fair for me to go looking for another full time job, when I know that I can't keep up with it. Does anyone have any ideas of what they've done in this situation? I've looked into state disability, but that doesn't give you health insurance. My other concern is that I won't even be able to get insurance on my own because they'll say I have a "pre-existing condition" I don't know what to do!! If I'm absent again in the next three months [which, unless there's a miracle I know is going to happen] I could get fired.
Any advice would be appreciated.
I know what you are going through. I was diagnosed with Lupus in February after having been on sick leave from work since December. I too had many absences from work and my employer was not too happy with it. Just yesterday had to quit my job, which was one that I loved, because my rhumie said that I could not go back to work even part time for at least two months and who knows how long after that. I am on medical benefits right now but I don't know how long that will last. If you need to talk or just to vent feel free to pm me! Good luck
Hi Chickadee -
I had to stop working for a year due to Lupus. I'm not an expert in employment law, but Lupus is covered under the ADA and so I think that most businesses are required to make "reasonable accomodations." I've been fortunate to find a place that does that........
Anyway, this is something you may want to look into.
Good luck and welcome to the site!
Re: Tough Spot
Hi Chickadee !
So sorry for your situation but I think you should work but not 8 hours better 4. If I am your husband ,I asked myself:"School or work and my wife?"Maybe some other time I can finish my school,now I need to think about my wife.
Did you say him that?He must know how do you feel.
I hope I do not sound too rigorous.
Welcome to the forum :lol:
I wish both of you all the best.
i agree your husband need to think of your health. can he do part time schooling through the nights?
If your employer has fifteen or more employers, then you are covered by the Americans with Disabilities Act, which requires your employer to make "reasonable accomodations" in your work situation if you are able to fulfill the "essential functions" of the job with the accomodations, and they do not pose an "undue jardship" on the employer. Reasonable accomodations could be anything from a flexible working schedule to a transfer to a different department - a lot depends on your particular work situation. If you were an RN, or in some other position where the employer has to have a certain number of people on duty to meet legal or contract requirements, then being available is considered an "essential function" of the job and the employer is not usually required to make any special accomodations. But if your employer has fifty or more employees, then you are also covered by the Family and Medical Leave Act, and your employer has to offer a certain amount of unpaid medical leave. Your state may also have other laws about medical leave benefits. If you have an employee benefits coordinator at your work, that might be the person to talk to.