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| *Women health>>>Lupus |
What is Lupus disease? |
My doctor told me that i have Lupus disease but i'm only 13 so i have know idea what it is... anyone know??? Anyone you know had it???? I Need help... i've got to tell my friends but there going to want to know what it is so anyone know what i should say or what Lupus disease is? It probably sounds scary to be told you have lupus, especially at 13 years old. It can be very painful and even life-threatening but it isn't always so bad as it seems. I've had it all my life and I'm eons older than you (I was around when Moses wore papyrus diapers), plus I live a life I choose and enjoy it too so try not to let it get you down. You're smart to ask these questions because information is the strongest power on our side, as long as it is true and up to date. A lot of mystical mumbo-jumbo and phony cures float around, some promoted by medicos or shysters so tune in the truth and flush the slush. First, Lupus is a disease of the autoimmune system which means that, even when symptoms strike our outsides as in discoid type, or internally as in SLE (which means systemic, which means here or there inside) it is because our bodies misread internal signals. When the healthy immune system feels threatened by a virus, or exhaustion or bacteria or other sick people, it turns out its inner army to fight the cause. When the lupused immune system reads those signals, it turns its army on the symptoms instead of the effects, which means, against us. It's like Marvin the Martian in the old cartoons. Marvin and his army come from Mars to invade earth but they are so ****-eyed and cuckoo that they fall over their own feet, shoot themselves with their own guns and blast themselves with their own rockets. Major battle berserk. That's lupus, going on inside us. Fun, it ain't but it can often be lived with once we get the hang of it. Tell your friends all that and be sure they get that this is serious stuff but you are still and always will be - you. Then tell them you need to avoid sunlight or at least cover up with 30+ sunscreen, big hats, long sleeves and pants/skirts, whatever. That you need to lighten up and kick back as soon as you start to feel the teeniest bit tired or spacey. That sick people need to back off and keep their germs to themselves until they're absolutely sure they're better. Catchy stuff is very unkind to us lupies, whether they feel sick or not. Don't burn the midnight oil or it's burn you out and you'll pay for it in extra time lost feeling ill. Plus pushing it pushes our pain up. Find a good doctor who specializes in lupus and is happy to answer your every question, without ever treating you like a kid or brushing you off. Be ready to face the truth and your own fears with an activist attitude and that will give you more strength and understanding to work on your side. You can still have fun but just don't blow it or you might blow a fuse. You might feel over emotional sometimes and that means take some calm quiet down time. Eat light, toss the fats, go with less or no meats and avoid stimulants which fire up our engines too high. By the time I was your age I was a long-term lupie already and not yet diagnosed so Marvin was my alter-ego and I didn't even know it. But here I am, working as a healthcare researcher/writer in lupus and other autoimmune (AI) diseases, living as large as 5'3" can get and digging it all the way. Lupus actually turned out to be my road map and the journey is pretty good. Plenty of doctors said I'd be dead and gone by your age, then by my 20's, then any minute thereafter but here I am, still digging it. Check out the links below and share them with your family and friends. One is my own lupie bio of a long, wild ride that ain't winding down yet. We can learn a lot from Ol' Wolfie, our lupine mascot, if we're inclined to be explorers and go for the good stuff - we can do plenty and be happy, wolf or not. Write me back anytime and I'll be glad to help guide you through the woods and down the yellow brick road. Of course, we have to help pave it but it's a much better trip than you might think. It can also help you and your friends become wiser, kinder, better people, for all the magical learning you pick up along the way. I care about you and won't forget you - please don't lose touch. With Caring Concern, Shar Links: Lupus Foundation of America http://www.lupus.org/newsite/index.html... Early Diagnosis of SLE in Childhood http://www.lupus.org/education/topics/ea... Lupus Chronicle http://hometown.aol.com/pubpanda/index.h... Lupus NewsLog (my home) http://lupusnewslog.blogspot.com/... Shar - Living Beyond Acceptance http://lupusnewslog-thrivers.blogspot.co... There's three kinds of lupus; discoid lupus, systemic and drug-induced. I don't know which one you have, but I know it's when your immune system fails to know cells from foriegn viruses and germs, and starts to attack your body. Here's a link: http://www.lupus.org/webmodules/webartic... thought lupus was somthing to do with werewolves.........ooooooooooo... Firstly, it always makes me a bit sad to read this sort of question. Please ask your doctor - if you feel unable to ask your doctor this sort of question, then you ought to change to a doctor you find approachable. Lupus (or systemis lupus erythematosus, SLE) is a complex autoimmune disease, and it's difficult to explain everything about it in an answer like this. http://www.arc.org.uk/about_arth/booklet... is a link to a patient information booklet written for lupus sufferers and their friends, http://www.uklupus.co.uk/new.html... is a website with lots of good information. There is also a message board on this site, where you could talk to others with the condition. This is Shar, back with a few more links that you might find helpful. Please remember, many of us live long, useful, fun and happy lives with lupus. Family and friends who study with us, grow to understand our illness, how it affects us and our true needs can be wonderful assets and allies and really make a big difference in our health. You're obviously smart, to write in, address your issue and express yourself so clearly. Learn all you can, sift out the superstition, the snake-oil and the ignorant, pay close attention to what activities, foods, meds and attitudes work best for you and you'll be building your own powerful tools for your protection and future happiness. Don't mind if some of these articles below call you a child, just dig out the gold and use it like true treasure to enrich your life. I wish you all good things life can bring when we are willing and ready to work for them - I think you have what it takes. With High Hopes, Shar LUPUS UK http://www.lupusuk.com/index.asp... Young People Beware: Alcohol and Lupus Don't Mix http://www.lupusmn.org/education/article... the Scoop on Smoking :: systemic lupus erythematosus http://us.f821.mail.yahoo.com/ym/compose... Lupus in Relation to Family and Friends http://www.geocities.com/sarahmcraig/fam... Childhood Lupus Thomas J. A. Lehman M.D., F.A.A.P., F.A.C.R. http://www.geocities.com/sarahmcraig/chi... Sarah鈥檚 Lupus Page (college senior) http://www.geocities.com/sarahmcraig/... |
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