Friends With Lupus

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Welcome to the Friends With Lupus MySpace Page. This page is for ALL who are affected in ANY way. It is important for friends or family of those with Lupus to have a place to find answers and support, just as much as it is important for those of us who have the disease. This page is also intended for a place to exchange information on doctors, medications, and treatments. I hope as more people find out about this page, that some real friendships grow and information can be exchanged to really help eachother. If nothing else, to have a place to go where others understand. Come here to vent, celebrate, or have people to talk to through tough times. There is no such thing as complaining on this page. This disease is hard and it's o.k. to say what we think about it-and that is not complaining. Alot of us don't talk about it because we don't want others to think we are complaining. SO TALK! Good luck to us all as we continue the quest for a cure, and God Bless.
Hi Everyone! My name is Monica. I thought I might share a little about myself. I have 3 boys, ages 13, 11, and 8. My 11 year old is a special needs child. He has an Autisim Spectrum Disorder called PDD and the most severe form of Bi-Polar Disorder (Manic 1), and ADHD. But he is a great kid and I can't imagine life without him. My other 2 are just normal boys and all 3 keep me very busy. About a 2 years ago I went to the doctor because I had noticed that my hair was falling out in handfulls. I would find it in my chair at work. I was having shortness of breath and heart palpitations. I was very tired all the time and I was working at a job that I hated and was very stressed out with it. I went to the doctor also because I was having flu like symptoms, but without the fever or cold. He told me that it was probubly stress, but wanted to test me for Lupus. I didn't really think much of it because 6 or 7 years earlier I had gone through a simular thing but the thought then was Multiple Sclerosis. In the end, it was nothing. But M.S. and Lupus are in the same family, so it was probubly Lupus all along. Anyway, three days later, the doc calls, has me come in. Tells me he believes it to be Lupus. My ANA was at 360! So I was sent to Lubbock, TX to a specialist. The diagnosis was confirmed, it was LUPUS. I had lost alot of weight. My eyelashed fell out too. Since then I have gone through a lot of ups and downs. My hair has stopped falling out finally. But it seems with each new step forward, I have two steps back. This summer I came down with strep throat. The Anti-biotics prescribed for that released bacteria in my body that caused a severe bacteria infection and a G.I. bleed. I was so sick and in so much pain. It took two rounds of antibiotics and two trips to the hospital to get over the bacteria infection. I literally thought I was going to die. I have never been so sick. After that I had to have a stress test. I told my doctor that I was having these wierd feelings going on with my heart. I failed the stress test. Sent for further testing and found that I have a leak in the Tricuspid valve. I am having some real problems with strange rashes and a boil outbreak on my face. I think I finally have that under control. But the boils were really painful and I think a couple of them will scar my face. Hopefully, they won't come back. It has been a rough few months and I do cry from time to time. It takes a lot to make me cry. I don't talk about it a lot because I don't want my family to be sad or worry. But, sometimes, it just all comes out. The thing I worry about most is my kids. I don't want to not be around for them and I don't want all of their memories of me to be that I was ill. I want them to remember me as the Mom who played football with them, who danced with them, who was fun. So, I try to be that mom still. But I also have had to be honust with them about Lupus and let them know when I need to rest. It's a hard balancing act. I think it is important to keep a very positive attitude and not to let Lupus be who I am. Sometimes I even make fun of it, laugh about it. I know that sounds crazy, but for me , well it works. So. this is a little about me. I hope in some small way, it may help you.