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393 Views 5 Replies 6 Participants Last post by  Maia
Hi there!

I have browsed this site a number of times before and decided it was time to get to know some of you on a more personal level. I can sympathize with all of you and what you are going through. I too have had to search to find a good physician (Rheumy) who was willing to listen to my issues and work with me.

I started having extreme bouts of fatigue and pain in all of my joints, particularly my knees and hips, about 2 years ago. This all happened after I had my thyroid ablated via radioactive iodine. I was in early Graves per my Endocrinologist and all my labs pointed to that as well. I went to a Rheumy who was not very proactive and didn't put me on any medications without my prompting, and would not give me a diagnosis, as my labs were coming up negative. However, he couldn't figure out the cause of the overwhelming fatigue and pain I was experiencing. Anyway, thank God I'm a nurse and did have some idea of what might be causing the problem. I then s/w a friend who had Lupus and she suggested I go to her Rheumy. I did finally get to see this gentleman in August and he did a battery of lab tests and I had an elevated ANA and Smith Neg was elevated as well. He did a really thorough exam, much more extensive then my previous Rheumy. He felt I had "undifferentiated connective tissue disease," but is leaning toward a diagnosis of Lupus, as I have many of the symptoms and criteria, such as a butterfly rash, levido reticularis on my thighs, swelling, and the other symptoms I mentioned earlier. I recently had a bad bout with a respiratory infection that I couldn't lick. I have been off work for a total of 5 weeks now, and have requested from my employer to possibly allow me to work from home. I work as a nurse case manager for an insurance company, and we do have a nurse in my department that has been working from home very successfully for the past 9 years. I haven't heard anything from my manager as to the whether they will accomodate or not. However, my Rheumy is more than willing to write a letter to her recommending this accomodation as well. My concern is that I don't know what to do if my employer won't accomodate me. I have been taking Plaquenil for over a year and am currently taking prednisone for the flare I have. It is helping a little, but I'm concerned about the possibility of not being able to continue my job if they can't accomodate. Have any of you experienced this before and do you have any words of wisdom to help me in my fight? Sorry this is so long winded.

This is a great website. So glad there are others out there that understand and are so helpful and supportive. You guys ROCK!!!! :rotfl:
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hello. nice to meet you. i have a friend named heidi that i call ho for short.

i'm having trouble keeping up with work too. i hope you work something out...
Hi Heidi, Nice to meet you. I don't have a quick answer, the best option if you can't get your work to accommodate you would to be requesting disability. Personally, I would approch a disability attorney and see if there are precedents which would help you in working from home.
I processed health claims in my life before lupus.
I am glad you got a good rheumy. A good doctor makes all the difference in your health situation.
Good luck,
Hello Heidi, I am in the UK so I am sure our system is a bit different. What I would say is that your request seems very reasonable especially given that someone else is already working this way.
Very Good Luck, and I know you will be tempted to hurry back to work but do be sure you are well enough.
x Lola
I can understand your concerns and Welcome. You may have to get the letter from your rhuemy and I would not wait to support you position. I know what you are going thru my boss and doctor are both trying really hard to keep me working as I have to go to work there is not a stay at home and work choice. You have to speak to someone in human resource or even notify your local chapter of the lupus foundation to help you. There are channels that you have to go through and it does take time.
I wish you all the best and keep us updated please.
There are a lot of factors that will affect what your employer is legally obligated to do for accommodations, so it's really difficult to advise you on that one. Depends on the country you're in, the size of your company, how long you've been employed with them, details of your condition and how it affects you, your physicians strength of backing you, etc. If you don't hear back from your employer within a reasonable period of time, you should probably bring it up again. If you get a negative response, ask why they decided that way.

As always, a lawyer can often help so you can seek out an initial free consultation and see what he/she says about your case.

I'm glad you have such a good friend that had a recommendation for a rheumy for you, and you were able to get a diagnosis and treatment. Your post raises an interesting issue... in that I wonder if legally having an UCTD diagnosis affects your request for employer modification versus having a lupus diagnosis. I would hope not, especially since diagnosis could probably go either way for many of us and is in large part doctor discretion as to which to use!

Good luck - I hope things work out for you and keep us posted on how things go.
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