Thank you for welcoming me, I have friends that I talk to but none really seem to understand totally. They don't say it but I feel like I'm driving them crazy with all my complaints. I am a single mom of two girls, 10 and 6 and taking care of them and dealing with my pain daily has taken a toll. I do my best to not let them see me hurt, so for the most part I keep it all in. I'm hoping to find friends that know the feeling and understand the frustration of dealing with it daily. I can't take anti inflammatories to help the pain, and only allowed 1 Tylenol every now and then, all of those OTC pain relief meds can set off SJS again and danger me more than help. Again thanks for welcoming me and I hope to finally find some peace.
I'm so glad to have found this website, some days I feel like I'm losing my mind. I haven't had an actuall diagnoses of SLE yet but this time last year I developed Stephen Johnson Syndrome and was tested for SLE by the Dr taking care of me. My dad has Lupus and those with Lupus have a higher risk of developing SJS, that's why I was tested. That test showed I had Lupus, they wanted me to wait 6 months or more for another test, SJS could have affected the results. Well ever since all that I have had so many problems ranging from bad headaches to joint paint and body stiffness to constant congestion making it hard to breath or catch my breath, chest pain, depression....it goes on and on. I'm not sure if all this o's caused from Lupus or lingering affects of SJS/TEN. I feel like I'm going crazy, all I do is cry cause the pain is so constant. I go the first week of January (when my insurance starts) for another test. I just want peace of mind, if it is Lupus.*
Hi leahm. Welcome to WHL! We are so glad that you found us. Please feel free to look through all of the old threads or start new ones if you wish. There are wonderful people here who will be glad to help, support or just talk with you whenever you need it. I am looking forward to getting to know you