Seems like everyday I search for someone who has understanding and I get let down. I want my family to understand me, but it’s not the way I want to be understood. I’ve been living with Lupus for years now and I feel that It’s getting worse. I have pain daily. I take my medicine and I feel emotionally, and mentally drained. I wish I had my old life back, But we can only wish right? I’m 45 years of age and I feel 98. I just want understanding and I feel that if I had someone from here understand me, and talk to me daily about the symptoms they have, I won’t feel so alone in the world. I get stared at all the time. My skin is affected by the Lupus and when they stare it makes me feel so self conscience about my appearance. I also have low self-esteem because of how bad my face looks. I ache daily, But I’m a lupus fighter and I refuse to let this disease being me down any lower than I already am. I’m the sweetest person why would this happen to me? I say. The world may never know. Also, Depression plays a big part in my life as well. I’m lower than low. Can’t get lower right? I have 3 beautiful kids and I strive to push everyday for them. I have my good and bad days. But however, Lupus is a life changing disease. 25 years ago, I would have never thought of me having this, now I’m living with it; what’s next? I can’t complain to much because I’m still alive. I thank God everyday. I would love to hear about the other fighter’s stories. We’re not going to let this beat us. We can do it!! " People laugh at us because we’re different, we should laugh because they’re the same…"
I understand where you’re are coming from. Sometimes we can handle ourselves like adults and I hope you’re doing well. Sorry for your loss, Hope you enjoy your day, be blessed.
Just want you to know you are not alone. I was blessed in that my lupus wasn’t nearly as active when my 3 kids were small. Yes there were those days I had to push through but nothing like it is currently. My baby is 17 and just today was tested for autoimmune issues. She has had high ANA in the past and has been having severe abdominal problems. My eldest daughter also has subacute cutaneous lupus and Sjogrens. Me SLE.
I’m also a fighter. Still have my full time job. If I had the option I would work part time. But I will work as long as I possibly can because I have to.
We will all be your lupus warriors! Welcome. (And Ann, so sorry for your loss )
Eagle 41- Thanks for the warm welcome. I hope everything will be well with your daughter and yourself. Warriors we are!
And Ann A. I hope I do as well, I’m here for anybody who needs me, I just want somebody here for me you know? But thanks guys.
Researching more about it, learning how it works, and affects my body and so on… It’s a whole list, but I just want them to know more about it and how I feel inside.
Have you heard of the spoon theory?? There is a youtue video ( https://www.youtube.com/watch?v=jn5IBsm49Rk&list=PL6431767B45462FA6 ) in which a woman explains what it's like to have Lupus to one of her best friends. I would suggest watching it if you haven't already. Maybe show it to the people you want in your support group/circle.
I am newer to this website but so far people seem to really care and understand what other people are going through. I am still in the process of telling people and getting them to understand (including myself). I would suggest seeing if there are support groups close by or in your area. I am going to try and go to one in my area tomorrow evening. Also get a list together of who you want in your support network and write a specific list of what you want them to know. Even a top 10 of what you want them to know is a good start Have them write a list of questions that they might have for you.
Either way if you need anything don't be afraid to ask or write. Good luck with your family and friends!!
Lovely’s I’ve been busy! But Ann A inbox me so we can talk more. Also Jeannine, Thanks for the warm words. Please inbox me so we can talk more
You are not alone in your struggles or your feelings in dealing with this thing called Lupus. Lupus changes our lives in ways that those who don't have it aren't able to comprehend. But everyone here understands because they have experienced on some level what you are dealing with. It is a difficult road, but rest assured you don't travel it alone. I draw a great deal of encouragement and hope from this site and the people on it. I hope you can too. Your faith will help you on those more difficult days. Look to those who lift you up instead of trying to drag you down. You are right when you say we aren't going to let this beat us. Lupus doesn't define us.. we live with it and the war against it is far from over. So press on sister! We're a force to be reckoned with :D
I am going to be 45 and have had Lupus all my adult life. I know how alone we can feel sometimes - but you are not alone, we are all here, too. Everything you said I identify with. Thinking of you and sending good thoughts!!