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  1. #1
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    hiiiiiii

    i am 23 years old, from canada. and on monday i was diagnosed with probable suspected lupus.

    ummmmm....... i'm a dancer, and i study theatre at university. i'm in my last year, and am preparing to go study theatre in a conservatory setting.

    i'm really not interesting.

    i hope that this board is what i need. i'm really quite scared right now, and i've been putting on this brave face for a lot of people, and i want to let it down.

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hello Perfectlyimperfect; :lol:
    Welcome to our family. I know just what you mean by putting on a brave face. Lupus is a very difficult disease to describe to someone who knows nothing about it. The disease never affects any two persons in the same way and the disease changes in us. There is no way of predicting what the disease will do or how it will affect us.
    You say that you have been told that you possibly have Lupus. What did your doctors base this upon? As of now, how has the disease affected you? Do you have any organ involvement? Have your doctors started you on any medications?
    You will most certainly find people here who not only understand what you are going through, but who have probably been there themselves. Also, everyone here is very supportive, comforting, informative and caring. You've come to the right place to find people who understand.

    I'm glad that you decided to join us :lol:
    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Hi perfectlyimperfect
    I joined this forum a couple days ago. Welcome. I have already found that the support here is loving and warm. It really does help to hear others experiences. We are all so different yet so very much the same! Glad you joined!
    Lars

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    thanks for your kind responses.

    the doctors are basing their "diagnosis" on a list of symptoms that just seems to keep growing. the main ones would be intense joint pain/muscle weakness, fatigue, discoid rash (???)(small oval scaly rashes that won't go away), the butterfly rash, cold hand and feet/tingling in limbs, as well as some blood test results. (i didn't pay attention to this part, as i was pretty much in shock, i have an appointment next week to go over it more in depth).

    the main thing that really affects me is the joint and muscle pain. last night i couldn't mash potatoes, and that's really frustrating for me. i live on my own, and i like my independence. but already there are some things that i can't do alone, and i hate that.

    i don't think i have any organ involvement. i certainly don't recall that being said. and no, i haven't really started anything for it. just some perscription ibuprofen.
    a lot of this is still..... unknown to me. i've never gone to one of those scary appointments where they throw a lot of information at you without a parent, so i know i missed some stuff. but come monday i'll know some more....

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    Welcome Perfectlyimperfect:

    I noted that you stated you had discoid rash; did they do a skin biopsy? It sounds like discoid rash (you mentioned oval scaly, are they red and very slightly raised, coin shaped?) If it is discoid Lupus lesions; you will need to wear long sleeves and pants when out in the sun. Cover up and wear dark colors as they allow less light in. Clothes that protect you from the sun are made out of nylon and polyester coolmax. Google Coolibar; they have UV clothes and have a great sale the beginning of every September which they are still having. I will typically wear a hat outside because you can also have lesions on your skull; I then notice hair in the sink, etc. Everyone has different reactions to the sun and flourescent lights; I am reactive to both. Do you have anyone in your family who has had Lupus? Mmmmm, just curious.

    In under Newly Diagnosed, Saysusie listed the labs usually tested for Lupus. You might find those helpful to take to the dr. next week do you can discuss them. Also, make a list of questions over the weekend for your doctor. If indeed it is Lupus, check out Amazon and see if you can find Dr. Daniel Wallace's book "Lupus for patients and families." It is filled with a lot of information. I reference back to it from time to time. Another website to Google is Webmd as it will also list labs usually checked prior to a Lupus diagnosis.

    You are not alone, this board has been a positive influence. You can share good and bad experiences; along with good and bad days. We have either been there, or are headed in that direction. Keep in touch, and hang tight.

    Take care,

    Faith 8)

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    thanks for your advice about the sun! luckily, i hate most outdoor activities so i only have to worry about when i HAVE to go outside.

    i'm really good about making sure that i take care of my skin and avoid the sun. i haven't gotten anything on any other areas of my body, that i can think of (maybe in the past, but i don't know.). but maybe on my scalp. i do lose hair. how would i be able to check for that? i mostly get them on my face. i've read that sunscreen helps with this. is there one that you can recommend?
    i'm asking because i'm assuming from your post that you also have them.

    thanks

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    Hi Perfectlyimperfect,

    You don't have to thank me; trust me I learned the heard way. I used to run 5 miles per day until finally after being in the sun for a short time, I couldn't walk for 3-5 days. I crawled from bed to bathroom until the Keyflex shot kicked in. Wear a hat if you go outside. My front driver/passenger windows are tinted; I carry a dr's note inside my glovebox in case I am pulled over by the police for having tinted windows.

    Every evening after bath; I do a quick body check for discoid lesions. As far as sunscreen, several people on this site can make recommendations.

    Honestly, I buy the "No-Add" 30 spf from Wal-Mart in the bottle for $5.00. In the Summer & Winter, I purchase the clear spray
    in the bottle at Wal-Mart at the end of Summer for $6.00 each and stock up on 6-8 for Winter, Spring and early Summer. It is a necessity for your medical condition; I was told it could be an additional medical expense at tax time.

    Losing hair; I would have your dr. run a thyroid lab panel to check your thyroid and rule that out. If you are still losing hair after wearing a hat outside; it could be stress and/or the disease. Are you ever under flouorescent lights at work or at home that do not have a clear/white plastic cover? This effects my discoid lupus; I went back to regular lightbulbs. Never noticed it before; there are a lot of public places with flourescent bulbs and no covers, i.e. SamsClub, Costco, classrooms. I make sure I wear pants and long sleeve shirts.

    Plaquenil is good for those of us who get discoid lesions; it really helps build an immunity up though it takes about 6 months. I get my eyes checked due to the Plaquenil 2x yearly per my rhumy. The Rhumy wanted a baseline eye exam prior to beginning Plaquenil. The insurance usually picks up the eye check due to Lupus, with the exception of a 30% copay. Plaquenil has been very good for me; I learned to take it right after eating dinner. I hope this helps. Mmm, I have seborritis of the scalp which also effects the hair and scalp.

    Keep us updated and we are thinking of you. If you should have any more questions, don't hesitate to ask away. 8) That's we are here for!!

    Yours truly, 8)

    Faith

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    Hi there,


    I am 25 and I too have just recently found out I have lupus/UCTD and I too am a dancer. I use to teach dance to 80 students but have cut this down significantly as I was finding it too difficult. I am worried about how this disease will further effect my ability to dance and do other activities I enjoy. So I understand the worrying you are going through and send you some hugs.

    I am trying to focus on what I can do as opposed to what is now difficult.

    All the best, take care

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