The Lupus Forum banner

1 - 2 of 2 Posts

3 Posts
Discussion Starter #1
Hi to everyone!

I hope all is well with all of you. I'm so sorry it's taken such a long time to get back on this site. My world has been crazy, to say the least, as I'm sure many of you can attest to as well. I had a major flare of my lupus over the Christmas holiday & was out on Short Term Disability for 6 wks.

I've never been out for anything illness-related before that required me to be on disability. The only time I had to be out for a long period was when I gave birth to our daughter. Otherwise, I've been extremely blessed with my health until now. At that time, I spoke with my Rheumy about the possibility of helping me get approval from my employer to try to work from home. He assured me he would do "everything he possibly could" to get me home.

However, when he sent in the required paperwork, he was not very straight forward about my symptoms, & in fact, was kind of subtle with regard to what he wrote, stating "I may benefit from working at home, & my ADL's are not affected." He never mentioned once about my immune system being compromised, as he knows I work in a cubicle environment for an insurance company & I'm exposed to everything under the sun as we work in very close nature with our coworkers.

We also have a number of coworkers who are allowed to work from home, purely for convenience sake, not because of health issues. I realize I'm perfectly capable of doing my job when I'm not flaring, but when I flare, I have trouble being at work due to extreme fatigue & weakness. He seemed to be very disappointed with the company's decision to not approve my working from home, but now, I'm not so sure.

I have been off for the last few weeks again, this time I have proptosis of my right eye that causes double vision & can be related to lupus. They plan to perform a biopsy of the eye to know for sure what is causing the problem. I felt like I was getting a flare again prior to the double vision starting. Then this week I got strep on top of everything else. I contacted my Rheumy to inform him of my symptoms, as I've been instructed to call him anytime I feel I am getting a flare. Well, he blew me off & told his nurse to tell me this wasn't related to the lupus.

To top this all off, about a month ago, I sent a letter to him to request he send another letter to my employer indicating his disappointment with their decision about my working from home. I have not heard a thing, & this particular Rheumy is supposed to be one of the best around here. I'm so confused & unsure where to turn from here. I understand that strep is not caused by lupus, but when one flares, it is my understanding the immune system is compromised & therefore we can get all sorts of fun illnesses.

I don't mean to blabber on so much. I'm just very, very frustrated. I put all my confidence in this physician, as he is the 2nd Rheumy I have seen & he was so incredibly supportive when I first saw him & indicated this was not all in my head & really made me & my husband feel he could be counted on to get us through this. Now, I'm not so sure & need to know what your thoughts are & what suggestions you have.

Thank you so much again for your time. Take care & blessings to you all!


485 Posts
Hi Heidiho, I can relate to this extremely. I work in a similar environment and get everyhting that goes round. I couldn't ever do my job at home.

If I may make a suggestion. From your description of him I don't think the Rheumy is blowing you off per se but might just be bogged down with too many patients. He may be entirely sincere when with you but of course as soon as we leave even the best of them see us as cases. I would write to his secretary and stress that he said A B and C and ask her to get him to dictate a letter to her. Explain to her the practical difference that this would make to your life. She may take an interest in you if you word it right. I have always found the secretaries know the Specialists like a wife knows a husband and can ask him in a way and a time when he will be actively listening.
1 - 2 of 2 Posts