Janet - posted on 01/17/2009 ( 6 moms have responded )
Hi everyone! Thank you for joining our circle of Moms with Lupus/Autoimmune disorders, where I hope we will become a community of folks sharing experiences and support.
How about a roll call to help us get to know each other? I'll start....
I'm in Westchester County, NY. (NYC suburbs) I'm almost 39, and my kids are 17, 10 and 8. I work full-time as a mid-level mgr in financial services, but was just laid off from my job. My husband is a full-time Dad and does some freelance work from home.
I was diagnosed with Systemic Lupus Erythmatosus in March, 2008, but may have had the disorder since my teens. My symptoms over the years included the usual suspects: joint pain, fatigue, mysterious rashes, fevers, butterfly rash, discoid lesions, soft tissue swelling, memory issues, peripheral nervous system involvement, etc. My diagnosis took nearly 3 years after first seeing a Rheumatologist, and my first 3 tests for ANA were negative. When the ANA was finally positive, and my Rheumy ran the additional antibody tests, we discovered I was positive for antibodies against double-stranded DNA (dsDNA) and coupled with all the clinical symptoms...it was Lupus. Although the ana pattern was nucleolar, suggesting scleroderma, the symptoms were much more clearly those of SLE.
I'm currently taking Plaquenil, CellCept and Prednisone to control the disease activity, which had become quite aggressive over the last year. I've also taken methotrexate, but the disease activity continued to outrun that one. I'm feeling pretty good today, trying to get plenty of rest, reduce stress (yeah, right....) and being a faithful visitor to my rheumatologist who is also thankfully my primary care doctor. (One stop doc shop!)
My biggest challenge as a mom with Lupus is not having the energy to do things with my kids that I'd like to be able to do. When I do feel up to it, and we throw caution to the wind to go sledding, for example, I pay the price afterwards with days-long fatigue, pain and swelling, and feeling like I have the flu. My husband and kids know about Lupus, are aware of its effects and are very supportive, but they are also often afraid of the toll it may take on my long-term health.
Please post your story!