Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
I'm recently diagnosed with lupus and really struggling physically and emotionally. My symptoms are getting worse. I keep ending up back in the hospital.
Yesterday I tried to go to physical therapy, couldn't do even simple exercises, went straight to my doctor's office, and was sent straight to the ER. My mom lives nearby, but my two sisters and my older sister's family are visiting from out of state. So while my husband stayed home with our girls, my mom dropped off my sister C to drive me home and went to spend time with my sister S and her family. My mom was really worried and wanted to stay to take care of me, but her worry actually makes me feel worse. I was glad to have C with me.
So when I texted my mom and S to let them know I am doing a little better today, they both responded enthusiastically that they're so glad I'm doing better and that I'm okay. But I'm not okay. I'm still hurting SO much. And I'm still fatigued. And I'm scared. And I don't have any answers. And my emergency visits are occurring closer and closer together. And I think I'm going to have to go on short term disability.
And I'm so angry that they think I'm okay. What is wrong with me?
Also, I'm scared about what kind of mother I'm going to become. I have three girls, 13yo, 11yo, and 19mo. My older girls have been helpful - and also teenagers. I need their help, and I try to tell them how much I appreciate their help, but I still get angry when they give me a bad attitude about doing something I simply cannot do anymore. And there is a lot I can't do. And I hate it, because I'm a very independent, strong, active person. Or at least I was.
And my baby... my baby. She loves to climb on me and hug me, and I let her because I love her, but sometimes it hurts so much. I'm crying now because how am I supposed to protect my body from my tiny girl's love?
Yesterday I tried to go to physical therapy, couldn't do even simple exercises, went straight to my doctor's office, and was sent straight to the ER. My mom lives nearby, but my two sisters and my older sister's family are visiting from out of state. So while my husband stayed home with our girls, my mom dropped off my sister C to drive me home and went to spend time with my sister S and her family. My mom was really worried and wanted to stay to take care of me, but her worry actually makes me feel worse. I was glad to have C with me.
So when I texted my mom and S to let them know I am doing a little better today, they both responded enthusiastically that they're so glad I'm doing better and that I'm okay. But I'm not okay. I'm still hurting SO much. And I'm still fatigued. And I'm scared. And I don't have any answers. And my emergency visits are occurring closer and closer together. And I think I'm going to have to go on short term disability.
And I'm so angry that they think I'm okay. What is wrong with me?
Also, I'm scared about what kind of mother I'm going to become. I have three girls, 13yo, 11yo, and 19mo. My older girls have been helpful - and also teenagers. I need their help, and I try to tell them how much I appreciate their help, but I still get angry when they give me a bad attitude about doing something I simply cannot do anymore. And there is a lot I can't do. And I hate it, because I'm a very independent, strong, active person. Or at least I was.
And my baby... my baby. She loves to climb on me and hug me, and I let her because I love her, but sometimes it hurts so much. I'm crying now because how am I supposed to protect my body from my tiny girl's love?
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
There is another website called lupusconnect.com. It is a wonderful site, with lots of people going thru the same Crap.....
God Bless
Hope you get to feeling better
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
My coping skills are to always do research and to try safe, natural techniques. That's how I discovered that a gluten-free diet helped. Also staying away from all artificial sweeteners. When I can't do things requiring physical stamina, I usually can "look" for possible answers online. Best wishes to you for finding what works best for you.