Back from the lost
I just wanted to say hi and let everyone know that I was alive. I'm sorry that I haven't been posting a lot lately. I have been following the posts and topics, I just haven't had the energy to write. The last three weeks or so have been pretty bad, with lots of joint pain, especially in the wrists and fingers, and I have been having some pretty severe chest pains, along with some bad fatigue and issues with dry mouth causing bleeding lips and tooth pain.
So, today I went to the rheumy and he said that he was pretty disappointed because he really thought that after 4 months on the Plaquenil, Mobic and Trazodone, I would be doing so much better. He did a full work up and listened to my litany of complaints and said that I needed to increase my trazodone, keep on the plaquenil and mobic, and that he is adding 10 mg of methotrexate once a week and large doses of Folic Acid (partially to support the Methotrexate and partially because I am vitamin B anemic). He has upgraded my Lupus from "mild" to "moderate" and is particularly concerned about the pleuritis and the pain and swelling in my wrists and right shoulder. He also said that I definitely have Fibromyalgia and Sjogren's Syndrome in addition to to SLE and Raynaud's. he wants me to wear a jacket more often, a hat and sunscreen every single time I leave the house, even if I am not going to be outside because my photosensitivity is affected by most flourescent lighting and if I am going anywhere where there will be more than a few people, I need to protect myself from germs with a mask or something.
I am so overwhelmed. I am working 42 hours a week, and I still don't have my driver's license back. I feel like I am walking through a dense fog and I am never on top of anything at work or at home. My kids and husband are so great, but I know they are frustrated too, especially since I was feeling better for awhile, but then slid back downhill really quickly.
Does anybody have advice about how the Methotrexate may affect me and about how to manage the Sjogren's? He doesn't want to give me medication because I am on so many other things. The dry mouth with tooth pain, dry eyes, dry skin, and dry, cracked, bleeding lips have become a huge problem.
Thanks for listening to my overly long rant.
"If you think you can, you can. If you think you can't, you're right". - Mary Kay Ash