new here and looking for new friends :)

[agalan]

hello everyone my name is Michelle and im 14 years old i was diagnosed with lupus about 3 years ago.I live in California and so far i know noone that i know with lupus witch makes it hard so talk to someone who will be quick to judge and just does not no how i feel for the simple fact that they do not know what i am going through either that or they will just feel sorry for me and treat me like a whole nother person:huh: witch just sucks excuse my language but thats how many people react to it:aww: so i hope to meet new people and make new friends style_emoticons/<#EMO_DIR#>/smile.gif

OoMiiCkEyoO

[macfamily53]

[size=7]Dear Michel

First of all i am sorry you are so youngand ahve to deal with soemthing like this, i am sure by now you know there i so much they can do for you to keep things under control. there is alot fo wonderful people in here your age that i have met so i am sure someone will come along your age to talk to. Sometime you should try the chat room. it has a lot of wonderful caring people in there and i have met young ones in there also. ia m sure someone your age will come a long here real soon. But until thten take care of yourself and hope to meet you in chat soon.

Take care Tammy style_emoticons/<#EMO_DIR#>/shakehands.gif style_emoticons/<#EMO_DIR#>/wub.gif

[oesa]

Hi Michelle - welcome!

I was diagnosed when I was 13. I'm 33 now (so I really don't fit the under 20 criteria but I thought I qualify on the basis of my age at diagnosis!)

I'm glad you found this site - iI'm a noob, but t's a very friendly place to me so far. When I was diagnosed one of the hardest things was feeling like I was a medical curiosity - like I was the only kid in the world with this weird disease. Finding people that you can talk to about things is really important, so visit lots, and ask lots of questions.

The other hard thing was the reactions of everyone around me. I sure didn't want anyone's pity, and I know you don't either - but remember that sympathy isn't always pity. Having lupus as a teen DOES suck, and people who love you will want to let you know that they recognize that, and think of ways to help you out. And that support comes in handy - my mom needed to drive me to school for a while, and some of my friends made trips to the hospital to visit me there. That stuff matters - I kept going to school even though I was pretty sick, and my friends were great about keeping me in the loop on all the other stuff I needed to know (who had asked who to grad, what the most recent student council scandal was, etc....)

I also want you to know that remission can and does happen. I've only had one flare in the last 18 years, (very recently) and am almost officially back in remission. I graduated from university, have a job I love, and travel whenever I can. Life does go on!

Anyways, welcome again - I hope you're doing well, and visit often!

[agalan]

HEY TAMMY! style_emoticons/<#EMO_DIR#>/biggrin.gif
well i just wanna let you know that its really ok it didn't really bother me when i got sick infact at first i just thought it was just a normal thing like i slept wrong i was sore or something like that until it just got to the point were i couldnt get up and thats when all the testing happend and so on but..yeah im use to it now and i have met some people on here that are very nice =] i havent met anyone my age though but im lookin forward to it hope to see you in chat soon too thanks and take care style_emoticons/<#EMO_DIR#>/cool.gif

[agalan]

Hello Lisa thanks for the welcome
Im glad i found this site to just to have people who know what im going through to talk to is reallt nice and you may not fit in the under 20 but because i can tell you know what i feel like and i havent met anyone that has when i barley got lupus i was mad, mad at the world mad at everyone who tried to be there for me i regret it but i just couldnt cope but then my family starte visiting more and i saw how everyone acted different around me witch in a way was cool but then again knowing that it was because i was sick hurt because it took me getting sick for them to realize that i might not be here but in the end it all worked out and im just living my life to the fullest and i love it well im sorry but i have to go so i hope to talk to you soon take care

[hoperachel]

hi michelle my name is hope im 18 im from the uk. i was diagnosed with sle when i was about 8. at first i only had the butterfly rash on my face n aches and felt tired.

when i was 15 i was put on plaquenil to help me stop feeling so tired and help with the rash which by then has gone for my face to my chest back and shoulders also i suffered with mild acene too.
the pills worked up till about 6/7 months back when i was diagnosed with vasculitus (inflammation of the blood vessels) of the skin and was showing signs of slight kidney involvement.

i am now on only pain killers and antbiotics as i was on immunesuppessants to lower my white cells in the blood. but yesterday after 3months ive had to stop the second lot of immunesuppressants the docs have tried me with as my count for white cells in the blood have gone too low i am hoping in a few weeks i will be able to try some different pills which will work.got to wait for my white cell count to come up first though.

although ive had sle since about the age of 8 i have lived a normal life as possible did well at school went out with friends ya no the things children do. the only thing is now i cant go abraod as i know my skin would be badly effected. i just try to carry on as normal as possible. i can do different things just have to rest between task. las tweek i got my nvq2 qualification in child care after studying at college. what im trying to say is although you have lupus i know everyone one is different but f you ehat to you can still reach your dreams it may take longer and you may have to do things differently to others but you can do it. everybody is effected differently by sle though and deal with it in different ways.

if you would like to know anything just ask and i will do the best i can to help you. i wish you all the best for the future take care best wishes from hope x style_emoticons/<#EMO_DIR#>/shakehands.gif
ps nice to meet you hope you find this site useful it has helped me alot lately the people on here are very supportive. any questions or you would like to drop me a note you are more than welcome just email me sometimes i am in chat so maybe see you in there one day style_emoticons/<#EMO_DIR#>/shakehands.gif

[oesa]

Hi again Michelle. You sound like you're already past most of the hard thinks about lupus. My attitude is that lupus shouldn't run my life - all I can do is play the hand I've been dealt as best I can, and have as much fun as possible while doing so.

Just as an aside, I had the full SLE experience - rashes, joint pain, fatigue, mouth ulcers, pleurisy, nephritis, brain fog (my mom found that one really stressful - marks were important to her, and here I was not being able to find words like "dinner..." lol....) I also had some of the nastier side effects from prednisone, so if you have questions about what it was like for me - either specific lupus questions, or questions about how I dealt with some of the other stuff (for example, I did part-time school for a while, which needed some explanations to my friends, I think mostly because they were jealous I got to sleep in every day...) I'd be happy to answer if I can.

Of course, I'm not a doctor, and everything I say is just based on my own experiences and what I've learned from living with this for 20 years. You should definitely always check with your doctor if something you read here (or anywhere on the internet for that matter!) makes you wonder about your treatment, or side effects, or anything else.

I hope you're well - post again soon!

Lisa

[katrina]

Hey Mickey!
My names Katrina and I'm 16. I was diagnosed when i was 14 though and it was definately the hardest time of my life. I caan't imagine having to move and tell everbody new you meet about it. I've lived in the same place for about 12 years and the friends I have treat me totally different from when i wasn't sick. I've lost alot of my old friends becuase they couldn't deal with my lupus. It was like they were afraid they were going to catch it or something. But the friends that you do meet and that stick with you, you know are true friends that will always be there for you. Life can definately be challenging with lupus but you have to try and make the best of it. You'll also probably find your alot more mature than your friends..at least thats what i find. We just don't have the same things in common anymore and i'm super close to my family where as most of the people i know can't stand to be around there family. So there are good things about lupus i guess. Anyways if you ever wanna talk just write to me.
Love Katrina

[lilnikki]

Hey everyone, my name is Nikki. I am 19yrs old and like you have Lupus. I was diagonised with it in Jan/Feb of this year. However the doctors think that I may have been living with it for sum what longer than this, as I ave been seriously ill for the last for years. I have alot of other auto-immune problems and am also on prednisolone. I have been for nearly four years, and have learnt to accept the changes that it has made to my body. Espically my face. I wasn't easy but at the end of the day I am still me.
I have found it hard to cope with and rather confusing at times. But if anyone has any questions or just need to chat, I hope that I will be able to help, as well as learn from your experiences.
style_emoticons/<#EMO_DIR#>/smile.gif
Nikki xx

[agalan]

<div class='quotetop'>QUOTE(Lisa_S @ Dec 16 2005, 12:21 AM) Quoted post</div><div class='quotemain'>
Hi again Michelle. You sound like you're already past most of the hard thinks about lupus. My attitude is that lupus shouldn't run my life - all I can do is play the hand I've been dealt as best I can, and have as much fun as possible while doing so.

Just as an aside, I had the full SLE experience - rashes, joint pain, fatigue, mouth ulcers, pleurisy, nephritis, brain fog (my mom found that one really stressful - marks were important to her, and here I was not being able to find words like "dinner..." lol....) I also had some of the nastier side effects from prednisone, so if you have questions about what it was like for me - either specific lupus questions, or questions about how I dealt with some of the other stuff (for example, I did part-time school for a while, which needed some explanations to my friends, I think mostly because they were jealous I got to sleep in every day...) I'd be happy to answer if I can.

Of course, I'm not a doctor, and everything I say is just based on my own experiences and what I've learned from living with this for 20 years. You should definitely always check with your doctor if something you read here (or anywhere on the internet for that matter!) makes you wonder about your treatment, or side effects, or anything else.

I hope you're well - post again soon!

Lisa
[/b][/quote]

Hey Lisa sorry its taken so long for me to reply its just holidays and all =] hope you had a good X-mas and New Year!
style_emoticons/<#EMO_DIR#>/woohoo.gif but anyway i think that your attitudes great and true im on predisone right now so umm.. i dont know what the affects of it can really be witch is not really smart on my part lol so yeah with school im getting home schooled right now and most of my good friends now but the people that don't know take advantage of the situation and start rumors you know high school style_emoticons/<#EMO_DIR#>/doh.gif but i don't really care in my opinion they can think what they want because i don't care its not gunna affect me well thanks for the help and i will ask my doctor about somethings i've been wondering style_emoticons/<#EMO_DIR#>/biggrin.gif thanks again W.B soon (if you can) lol oh k. take care

Mickey

peace XoXo

[agalan]

<div class='quotetop'>QUOTE(hoperachel @ Dec 15 2005, 12:26 AM) Quoted post</div><div class='quotemain'>
hi michelle my name is hope im 18 im from the uk. i was diagnosed with sle when i was about 8. at first i only had the butterfly rash on my face n aches and felt tired.

when i was 15 i was put on plaquenil to help me stop feeling so tired and help with the rash which by then has gone for my face to my chest back and shoulders also i suffered with mild acene too.
the pills worked up till about 6/7 months back when i was diagnosed with vasculitus (inflammation of the blood vessels) of the skin and was showing signs of slight kidney involvement.

i am now on only pain killers and antbiotics as i was on immunesuppessants to lower my white cells in the blood. but yesterday after 3months ive had to stop the second lot of immunesuppressants the docs have tried me with as my count for white cells in the blood have gone too low i am hoping in a few weeks i will be able to try some different pills which will work.got to wait for my white cell count to come up first though.

although ive had sle since about the age of 8 i have lived a normal life as possible did well at school went out with friends ya no the things children do. the only thing is now i cant go abraod as i know my skin would be badly effected. i just try to carry on as normal as possible. i can do different things just have to rest between task. las tweek i got my nvq2 qualification in child care after studying at college. what im trying to say is although you have lupus i know everyone one is different but f you ehat to you can still reach your dreams it may take longer and you may have to do things differently to others but you can do it. everybody is effected differently by sle though and deal with it in different ways.

if you would like to know anything just ask and i will do the best i can to help you. i wish you all the best for the future take care best wishes from hope x style_emoticons/<#EMO_DIR#>/shakehands.gif
ps nice to meet you hope you find this site useful it has helped me alot lately the people on here are very supportive. any questions or you would like to drop me a note you are more than welcome just email me sometimes i am in chat so maybe see you in there one day style_emoticons/<#EMO_DIR#>/shakehands.gif
[/b][/quote]

Hey hope nice to meet you style_emoticons/<#EMO_DIR#>/goodvibes.gif well i was diagnosed when i was 11 i thought it was just that i had slept wrong or i was sore from basketball or soccer but then it got worse and i began to lose alot of weight so my mom took me to the hospital where they said i didn't have anything so....they did all this testing it took them like a few weeks to figure out what i had because of the simptoms like joint pain and rashes i was just happy they new what i had so they could treat it but then reality hit and i was just bumed out about school and how i was gunna tell my friends and i was mad but now its just like a normal life exept not so much time in the sun and i have to take med's every day witch i got use to =] i think its cool how your living your life doing your thing with school still having fun and gettin through everything style_emoticons/<#EMO_DIR#>/biggrin.gif im not on here that often even though i forget that im logged on style_emoticons/<#EMO_DIR#>/huh.gif lol im sorry i havent written back sooner but holidays style_emoticons/<#EMO_DIR#>/bigsmile.gif so i hope you had a merry X-mas and a Happy New Year style_emoticons/<#EMO_DIR#>/goodvibes.gif style_emoticons/<#EMO_DIR#>/woohoo.gif so W.B when ever you can take care

Mickey

peace XoXo

[agalan]

<div class='quotetop'>QUOTE(katrina @ Dec 18 2005, 02:05 AM) Quoted post</div><div class='quotemain'>
Hey Mickey!
My names Katrina and I'm 16. I was diagnosed when i was 14 though and it was definately the hardest time of my life. I caan't imagine having to move and tell everbody new you meet about it. I've lived in the same place for about 12 years and the friends I have treat me totally different from when i wasn't sick. I've lost alot of my old friends becuase they couldn't deal with my lupus. It was like they were afraid they were going to catch it or something. But the friends that you do meet and that stick with you, you know are true friends that will always be there for you. Life can definately be challenging with lupus but you have to try and make the best of it. You'll also probably find your alot more mature than your friends..at least thats what i find. We just don't have the same things in common anymore and i'm super close to my family where as most of the people i know can't stand to be around there family. So there are good things about lupus i guess. Anyways if you ever wanna talk just write to me.
Love Katrina
[/b][/quote]

Hey Katrina =D
WELLLL i was diagnosed when i was 11 so it was weird with friends and i agree its hard but time passes by and you get over it well not completly but you know what i mean i hope lol most of my good friends know about it and i can tell they try to treat me the same but you know how you can tell things change anyway most of my friends don't even bug me about it to them im still Michelle most of them were just like =O are you serious? no way and blah blah blah lol i think its cause i never let it show me being lound and not shy at all helps to everyone nows me around school even people that i dont know =\ witch is reallly akward when they come up to you and say "heyyy girl wassuupp how you been" and you just have to go along lol anyway im close to some of the people in my family since my parents are seperated i dont get to see my dad alot nor' do i want to but i do miss my cousins and uncles that are in HIS family so i dont get to see them because i dont visit my dad style_emoticons/<#EMO_DIR#>/aww.gif but oh well cant let that bring me down soooo thanks for writing to me hope i dont bore you =P well take care and happy late new years and x-mas

Mickey

peace XoXo

<div class='quotetop'>QUOTE(katrina @ Dec 18 2005, 02:05 AM) Quoted post</div><div class='quotemain'>
Hey Mickey!
My names Katrina and I'm 16. I was diagnosed when i was 14 though and it was definately the hardest time of my life. I caan't imagine having to move and tell everbody new you meet about it. I've lived in the same place for about 12 years and the friends I have treat me totally different from when i wasn't sick. I've lost alot of my old friends becuase they couldn't deal with my lupus. It was like they were afraid they were going to catch it or something. But the friends that you do meet and that stick with you, you know are true friends that will always be there for you. Life can definately be challenging with lupus but you have to try and make the best of it. You'll also probably find your alot more mature than your friends..at least thats what i find. We just don't have the same things in common anymore and i'm super close to my family where as most of the people i know can't stand to be around there family. So there are good things about lupus i guess. Anyways if you ever wanna talk just write to me.
Love Katrina
[/b][/quote]


Hey Katrina =D
WELLLL i was diagnosed when i was 11 so it was weird with friends and i agree its hard but time passes by and you get over it well not completly but you know what i mean i hope lol most of my good friends know about it and i can tell they try to treat me the same but you know how you can tell things change anyway most of my friends don't even bug me about it to them im still Michelle most of them were just like =O are you serious? no way and blah blah blah lol i think its cause i never let it show me being lound and not shy at all helps to everyone nows me around school even people that i dont know =\ witch is reallly akward when they come up to you and say "heyyy girl wassuupp how you been" and you just have to go along lol anyway im close to some of the people in my family since my parents are seperated i dont get to see my dad alot nor' do i want to but i do miss my cousins and uncles that are in HIS family so i dont get to see them because i dont visit my dad style_emoticons/<#EMO_DIR#>/aww.gif but oh well cant let that bring me down soooo thanks for writing to me hope i dont bore you =P well take care and happy late new years and x-mas

Mickey

peace XoXo