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Manca
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It's time that I share my story with you. Before I begin, I just want you to say that this message board helped me a great deal. When I read these posts I don't feel alone anymore.

I'm 21-year old girl from Slovenia. My problems started in october 2007. I had severe abdominal cramps and diarrhoea and I was losing weight. At first, they thought I had a virus. But things got worse. I had hot flashes, I was tired all the time and I couldn't sleep at night. Doctors assumed that my celiac disease got worse. They examined my small intestine but the results were fine. Then they said that I had Chron's disease. I didn't care which disease I had, I just wanted to know what was wrong with me. After another examination they said I didn't have Chron's disease. Next they figureed it out that is probably cancer. I was really scarred:worried:Luckily my toes turn blue and my doctor sent me to rheumatologist who finally diagnosed me after seven months of constant pain.

I never heard for SLE before. I didn't have a clue what kind of disease that is. The more I read about it, more scared I was. I mean, I'm so young and so sick, it doesn't seem right. At first, I was angry, then just sad. In the summer, I decided to do something to feel better. I went to reiki course. Reiki is a healing cosmic energy. I practised reiki every single day and it helped me (and it still does) big time. Some off the symptoms vanished8)My abdominal cramps were gone, I am so grateful for that. I still have problems and when I'm very active I'm far from feeling good, but it's much better. I take pills, do reiki and learning how to leave with this disease every single day. I trully believe that what doesn't kill you, it makes you only stronger. I like to say that lupus is my enemy and my friend at the same time. Because of lupus, I don't take life for granted anymore. I don't dream what I will do in my future, I do it now. I don't bother myself with unimportant things. Since I was a little girl, I was dreaming about horse riding. Now I live my dreams. I'm learning playing a guitar, which I have always wanted. I got familiar with reiki, which helped me so much, physically and mentally. I don't feel like a victim anymore although sometimes I feel like ****:lol:After the rain there is always a rainbow, remember that.

Maybe this will sounde strange but I like to walk in the crowd knowing that people who pass by don't have a clue I'm sick. Lupus is my invisible friend:rotfl:Sometimes I hate the fact that lupus is invisible disease and that people because of that don't know that I have special needs, on the other hand it feels great that I'm not asked all the time if I'm fine. My family and my friends are very supportive and loving, I know I'm lucky. And I'm grateful that this message board exist because it is different to talk about lupus if you talk to someone, who is going through the same thing that you do.

Thank you for reading my post and I wish you all that you would accept your disease and start looking on it as a bleesing rather than as a night mare (althouh sometimes it really is like having a night mare). Remember that every thing happens with a reason. I hope you discover yours.

Big big big hugh for you all and don't let the pain to rule your world. You are more powerful than pain. And so much grater.

Love, Manca
PS: English is not my primary language so I apologize for grammar mistakes:)
 

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Welcome to the forum Manca:blush:

Nice to meet you. I'm glad you decided to post, and lso that the site has been helpful.

I'm sorry about your diagnosis, but it sounds like you are well on the way to learning how to get the best out of your life despite and because of the lupus.

Your English is just fine - and your story is well written and touching to read.

Looking forward to getting to know you better,

X C X
 

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Hello Manca,
What a lovely post and your English is very good.
Nice to meet you and glad you have introduced yourself. You will find lots of help and support here.
You are very articulate in describing how you feel and what a lovely way to cope with things especially with you being so young.
Nice to hear some good positive thoughts.
Thanks and all the best,
Luv Sal xx
 

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Hello Manca and welcome :)

I think that your post expressed your way of dealing with lupus very well. Many of us here have those mixed feelings about lupus and the way that, on the one hand it can take a lot away from you and yet, on the other hand, it can give you a lot in that you do learn to live life in the present and enjoy today for what it is.

bye for now,
Katharine
 

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Dear Manca,

You are wise beyond your years and are an inspiration to me (I'm 43!). Thank you for sharing your story and perspective. You write well and your grammar is excellent. Attitude is extremely important in dealing with a perceived negative event and surely your attitude will help you cope when you are challenged by your symptoms.

Keep writing if it feels good to you--I'd love to hear from you again.

Monica
 

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What a lovely post, I'm glad you decided to join us and offer your perspective on living with lupus. You definitely have a great outlook on things, and seem quite wise beyond your years. :)

Welcome, it's nice to meet you!
 
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