16 year old Girl wanting some advice

[katrina]

Hey Everyone,
I'm 16 and I was diagnosed when I was 14..I haven't been on here in a while. The last year I've actually been doing pretty good. This semester I was able to return to school for one period and I do my other classes at home. My doctors don't want me over doing it and ending back in a flare. Exams are coming up so it's pretty hectic right now. Lately I've been kind of upset though. I just wish I could be a normal 16 year old..I'm going to be 17 in like less than 2 months and I just wish I could do everything everyone else was. I know this sounds really weird but in a way it's easier being sick. Because your to weak and to sick to actually really want to do anything. But now that I'm feeling better, I actually feel like a normal person but I still have so many restrictions and I have to be so careful. I live in Canada so the winters are really cold and alot of the people I know snowboard and ski and everything and I can't go with them because the cold hurts me so much with my arthritis and everything and I don't want to get really sick again. But its just not really fair. I have friends at school but I'm not super close with any of them anymore because I'm only there for one class and I can't do what everyone else is doing. I really liked this guy and he liked me too but once I told him about my Lupus he's sort of stopped talking to me. And I know that means he's not worth my time but it's so hard. I just wish people could see me for me and not my lupus. I am a normal person and it just hurts sometimes knowing that other people can't always see that. If anyone has any adivce about life or anything I would appreciate it sooo much! Thanks. Bye Bye xox
Love Katrina

[nzk1w1]

style_emoticons/<#EMO_DIR#>/foryou.gif Hey Katrina!!!
Joss here!! I know how you feel and I want you to know that I'm always at the end of an e-mail for you:) as for advice I have often asked for that myself...I'd say be positive and remember that no matter how bad things are for you, there is always someone that has them worse:( This is what I tell myself when I'm feeling down and saying how life isn't fair.
I keep my own book of quotes at home and I know you're asking for advice,...but...well you'll see what I mean..."Advice is what we ask for, when we already know the answer but wish we didn't." If you look in your heart I am sure you will know what to do to keep going and get through each day...and reach your sunshine at the end of the tunnel:) It will all be worth it in the end, things will turn around for you, I promise!
Hang in there! Love and hugs Joss xoxo style_emoticons/<#EMO_DIR#>/clover.gif

[hoperachel]

hi katrina, my name is hope im 19 from the uk. i know how you feel ive been diagnosed with sle since the age of 6/7 up till i was 13 just had problems with rashes and aching joints. so things werent that bad but ive always felt different to others but thats just something ive got to live with not everyone is the same.
joint pains and rashes started to become more troublesome for me after i was 13 i was put on plaquenil. that helped for a while. up untill about 9 months back when things t flare up worse than i had already felt everything was a struggle for me even getting dressed etc.
i saw the doctor at the hospital and he checked me over and noticed a rash on my legs which when i had a biopsy turned out to be inflammation of the blood vessels i was then put on imuran an immunesuppressant as blood tests showed my wbc was higher than usual. that lasted 2 weeeks had to wiat for wbc come up again as pills had lowered it too low.
i then was put on cellcept and after 3months had to come off that due to wbc being too low again. i though i would be ok on cellcept due to getting past the half way though stage. as it takes 6months for drug to settle probs with your immune system. now it been a month since stopped pills and last wek had a result that my wbc count has gone too low without pills. will have to see what the next result is to see what the doc came do about it. my wbc has been up and down for months.
my family have become more understanding these past few months watching and seeing what ive been going through but friends well i have two really good friends but they dont understand but i dont think people do if they havent got lupus.
on more of a postive note though i have got through school left with cs and ds gcse passes not the best results but not the worst either.
just befor christmas i got an nvq2 qualification in early years care and education after a year one day a week at college all my old school friends spent 3 yrs at college and havent done as well as me. i didnt go to college full time after leaving school because the college wouldnt ecept me but i got there in the end with help of another training provider. what im trying to say is you may have to do a few things differently but in the end you will get there its nothing to be ashamed of being different everyone is different in one way or another. think of the things you can do dont think of the things you cant. style_emoticons/<#EMO_DIR#>/foryou.gif i hope things are brighter for you in the future. if friends cant accept things about you then they aint worth bothering with its there loss not yours.

[balla]

Hi i am so sorry to hear that another youngster is suffering from this bad disease .
Although the doctors are just waiting to diagnoise mine i am a mother of three great children my eldest daughter being 19years old she as to got an autoimmune disease RAYNAUDS and VITAMIN B DEFICANCEY and doctors think hers is leading to lupus, She takes asprin to stop clots also b12 injections every three months for life now. Through this she leads a very good life she has her own flat lives alone,she has three jobs and goes to collage, she is an accountant works 9-5 monday till friday,book keeper for a local jujitsu club monday-tuesday evening 6-9pm also collage wednesday evening 5.45-9pm and on friday evening and saturday day his head barmen at a local bar. she also does jujitsu on thursday evening.
She does find it hard but as she lives alone she needs to do it she likes her independance and will not live on goverment money. Although her illness means she is permantly cold and always has infections due to not feeling heat and burning herself while having baths. she also has alot of pain in her legs due to raynauds she lives her life like any other girl of her age and not many have there own place at 19. My youngest daughter has just been told she has RAYNAUDS to also in her legs she is also epileptic she is 13 she loves dance and also jujitsu which she is good,I also have an autoimmune disease sjogrens and ?lupus.
We all live our lives the best we can and hopefuly so will you we look at it as this is an illness which will not go away sorry to say and not knowing how bad it will get you need to make the most of what you have.
And as for boys one day you will meet someone whome will except you as you are and that will be right for you,My daughter was in a two year relationship but unhappy now she is alone and enjoys it she says she is to young and wants lads as just mates. I know it must be hard and hope you the best in your exams.


GOOD LUCK

[anitav]

Hello Katrina!!!
My name is Anita....i too hate this disease! It sux big time~ I am 21 next week and was DX when i was about your age! Yes i know how you feel you cannot do things with your freinds i know all too well about that stuff! I quit school when i was 17 i could not handle it. i was @ the point i wanted to die...this sounds harsh to myself but i really thought life was not worth living. I thought no guy would ever love me because i have this wretched disease, but i found one and we have been together for 4 yrs! So you just need not worry about guys ok! If they like you enough they will understand!

I manage a restaurant and it is so stressful i know i am in the wrong job but i cannot afford not to work, and my boss understands this disease so that is why i stay plus i love my job, yet hate it cos it makes me so much more tired! I cant go in the sun cant do this cant do that, but i live around it which can sometimes be annoying but i do it so i dont flare which at the moment i am hitting one just ope i dont get too ill, i hate being sick! I have already had a blood clot which was nearly not detected becasue of stupid doctors...lucky i did not have a stroke hey!

HAng in there chickky this disease can only make you stronger but you must be positive ok?
with love anita

[katrina]

Thank you to everyone who wrote me...it really helped i loved your encouraging words! Most of the time i am pretty positive about my lupus. i understand that its a part of my life no matter what. it's just sometimes it gets frustrating. I really appreciate being able to talk to other people like me who have all this stuff to deal with it gives me more hope so thank you again!
Love Katrina

[edcdancer]

Hey Katrina...

Im sorry to hear about everything you have been though but know your not alone. Im Melissa, also from canada i have artritis too and lupus is also in my muscles..raynauds is horible this time of year too...I know how you feel. Reading your post is like someone saying to me exactally whats been happening with me..minis the guy thing. Im a dancer...but i recently had to quit almost all of my dances because of lupus...and its my life. or was...and the skiing and snowbording and friends thing...i total hear you..im close to my cousin who lives far away and my boyfriend...thats pretty much all i have now! Id love to have another close lupus friend if you ever want to talk let me know. I have msn...you can add me if u would like! Please i know its hard but hang in there....we can get through this together. Oh...i was dx this past october and been stuggling with it also for about 3 years! Anyways im 16...from just north of toronto...and remember you are not alone....i am also stuggling with the same issues pretty much!!! Im thinkin of you girl...im thinking of you!!!

style_emoticons/<#EMO_DIR#>/shakehands.gif its nice to meet you!!!

Hope you feel better soon!!! style_emoticons/<#EMO_DIR#>/flowers.gif

Mel style_emoticons/<#EMO_DIR#>/hugbetter.gif

[liss_666]

[b][i]
hey every1 i used 2 come on here alot when i was younger well i say younger im only 18 now lol but back then i was so down ppl used 2 cross the road because of my rash i was letf at one end of my class room while all the kids chucked things at me i couldnt do pe n i found drama so hard 2 keep up with so i was left out mostly at the hospital i have been treated like a ginnypig there is only one other young girl around my area she was diagnosed after me n was off her tablets b4 i was on n off tablets like there was no 2moro but now im fine i still c the doc but i have taken my tablets into my own hands (who knows your own body better than your self?)i have been doin this 4 2 years now n i havent had 1 flare up iv been on holiday 3 times as well my pain is at its lowest i have ever had i work full time n im enjoying life i acctually get up in the morining n i look forward 2 my day because i can now!!! style_emoticons/<#EMO_DIR#>/biggrin.gif im not saying any1 elts should do what i have because it is such a high risk!but i had 2 other wize i would never had been here 2 day because of my lupus i have tryed 2 take my own life twice n i realised that the lupus and the bullys were wining style_emoticons/<#EMO_DIR#>/laugh.gif now im on top of the world im still very insecure because of what happened 2 me at school but i dont care any1 who dosent accept my illness is not worth the hastle to explane it 2 them anyway bk 2 the reason i was rytin i just wanted 2 say any1 who needs 2 talk about any problems they have had be it about lupus or not (trust me iv had enough 2 last me a life time) just give me a e-mail n ill try 2 ryt bk asap i live in the uk n i dont get to tlk to ppl much so it wud be gr8 4 me aswell !!
so im gonna shut up now style_emoticons/<#EMO_DIR#>/halo.gif
lodza love n hugs
***mell***
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