new and stressed
i am excited to find this site as I am having a really hard time adjusting to my lupus. Family is caring but not really supportive. I have an amazing 2 yr old daughter who right now is the reason i struggle out of bed in the morning. I am feeling really guilty because there are so many things that I would like to do with her, but sometimes I just dont have the energy. Right now I am in the midst of yet another flare, was recently hospitalized for a week ( they wanted to keep me longer, I couldnt stand to be away from my girl). I feel like I am going nowhere fast with this disease. I am sure the meds dont help me mentally (pred is killer for me), although i know they help phsically. I guess what I am looking or hoping for is any advice or support - especially how you handle being the parent of a toddler/small child while having this disease. Thanks for listening and I look forward to hearing from you.
Welcome! Sorry to hear of your bad flare...I don't have any parenting advice, but do know that the support I've received from family and friends has been priceless. Is there a support group in your area? Do you have friends that might be able to help you with your daughter or with other errands/chores, so that you can have more energy with your daughter?
I wish you the best of luck and hope that you feel better shortly.
Thanks for your reply Missy....I have thought about support groups - the only one in my area is the LFA one. I tried to go one night but my brain being what it is - I got totally confused and lost - even though I have lived here all my life. That was a while ago, I am going to try to get there for the next one, maybe this time I will try to find it ahead of time!!!
Mom to toddler and preschooler
I was diagnosed with lupus kidney disease in 10/03. My children are now 14 months and 5 1/2 years. I guess I am very blessed because the meds are working for me. Its tough for me to give you advice about having lupus and being a mom to a toddler, but I can tell you that I know how you feel. One of the hardest things I have had to face with this disease is the times when I cannot take care of my children. One thing that has helped me is to see how much my children love me no matter what. They loved me when I swelled from pred. They loved me when my hair fell out from the chemo. It is my desire to see them grow to outstanding adults that keeps me fighting this SOB disease.
lupus with 5 kids
I understand your guilt so very well. I always feel like I should be spending so much more time with my kids. I feel like I should just be a better parent. But I am so tired. It takes all my energy just to get there homework done with them. What I have found is kids are very resilant. They will love you no matter what happens. Kids know and will learn to understand what is heppening to you. You just have to do your best. Le them know everyday you love them. Best of luck and take care of yourself! ~Lucy