Wednesday, August 31, 2011

Do You Ever Have One Of Those Days ??????

Do you ever have one of those days when you just want to give up? That life living with lupus is too painful to bare? I know I do.  Everyday is a struggle whether it be getting out of bed to doing everyday things like work or doing dishes. Nobody can describe what kind of pain they are in even if it mental or physical or both when you have lupus. Depression is a huge part of having lupus. At times I feel this unbareable loneliness and I don't understand why I have this disease.  I deal with the weight loss and the weight gain. I deal  with up and down emotions some I can explain other times I can't. I used to be so happy and funny, but these days I don't laugh much. I look at my self and realize that my smile is gone. I used to think that it was just me. That I was the only person who had to bare this cross. If I had one wish it would be to wake up in an entirely different body. I know that is NEVER going to happen. I try not to let this get the best of me and anyone who has lupus will tell you that it is not easy. So I fight with every bit of strength that I can muster. I have too. My daughters need me. My husband would be lost without me. My friends would miss me. My life has been nothing but survivng the odds from the day I was born. I would like it if I had just one day to wake up and look at my face in the mirror and like what I see. My mind, body, and soul are just tuckered out. Sometimes I wonder if I am the only one who feels this way. I know that giving up is NOT an option. I know that throwing in the towel is unacceptable.   Life is a choice you either live it or you don't. There is NO in between. So I am going to continue fighting even if I do get knocked down I will just get back up. I REFUSE to let lupus be the end of me cuz I know I have so much to offer. I am a good person. I am a good friend. I f I just stay focused on my  goals and the things right infront of me I know I will be ok.

Monday, August 15, 2011

I Want To Hear From You!!

Sorry for not blogging lately. I was having laptop issues.  I was sitting and thinking to myself that i blog mostly about my experience with having lupus, but what I am curious is about how others deal with there lupus. I want to really take this opportunity to let others write and share their story and how this disease has effected them in their life. I don't believe that if you are hurting and you are in pain that you should hold it in and try to be brave. One, that is not healthy and Two who can you vent to other than someone who is going through the same thing.  When I get my laptop back I plan on having a space where people can vent or write about themselves. Believe it or not it really does help.  Don't be afraid to say something because I do not get mad or upset unless it is personal,but I also don't judge people.  I am self conscious when it comes to the scars from having lupus, but they are a part of who I am. It is a constant reminder of all that I went through that lead up to the scars on my face and body. I didn't like the face I saw looking back at me because I thought I was more uglier. I could not stand in front of a mirror and be happy with the scars on my face from the subcutaneous lupus. I remember one particular day when somebody asked me if I scraped my face on the asphalt. I was completely horrified and seriously offended. That was the main reason why I could not feel or look beautiful. Then I realized that people like that are ignorant and incapable of feeling empathy. Well that is too bad for them. I am over it now , but at the time it hurt. To this day I do get stared at mostly by little kids who are curious. My scars have even been a conversation starter. Now I tell them about it and usually they know someone who has lupus. Having lupus doesn't take away from what is inside of you.  So when someone says something that is mean or hurtful you turn and say ( with a smile)  Thank you and I am sorry  you feel that way. Once you say that you automatically  put what that other person says back on them so they end up feeling stupid and a little embarrassed. I don't know why ,but that is funny to me maybe next time they will think twice about being rude. I would like to give Geoff Thomas a special shout out. He runs The Lupus Magazine online and he put up my blog on there so thank you Geoff.  Just remember you are beautiful inside and out and NEVER let ANYBODY make you feel anything less then that.

God Bless,
Mary