Hey want to make friends

[livvalivva]

Hey my name is Olivia
I new to this sight and would really like to make some new friends.
I am 14 and had lupus since i was 3. :blink: I live in new zealand.
Lupus is a real weird disease for me one day i feel fine and then the next day i feel really bad! :(
Im feeling like none else is goin throught the same problems.
Someone please write to me
i would make me happy to know other young people are going through the same!!
Thanks
Livvy :wave:

[bugsy]

:wave: Hiya Livva,

Glad you found us we are all here to help and support you. We met in chat yesterday and it was nice to meet you and great chatting with you, hope you call back in chat soon.

Take good care of yourself, love and hugs Jo

[Maura]

Hi Olivia

Nice to meet you.
Well, you certainly came to the right place.
Here you can talk and find support.
I am sorry to hear that you are so young.
I was 24 when I started to have my first symptoms. I am 34 now.
I live in Belgium, Europe.
Does the sun affect your skin?
I try to avoid the sun as much as possible because it seems to make my symptoms worse.
I can relate to what you are saying about feeling fine one day and sick the next.
It is very difficult to make appointments with friends.
Let us know how you are doing?

Big hugs

Maura

:wave: :wave: :wave:

[livvalivva]

Hey Maura and bugsy
Thanks so much for writing to me :thumbs:
It nice to know that there are people out there that care :D

Yes Maura i find i get rashes from the sun just getting over some on the back of my knee. It also seems to make me tired!

Do you get chest pain? :erm: Just wondering cause i had it really bad last nite!
Thanks for writing hope to hear from you guys again!
Lotsa Luv
Livvy :love:

[Maura]

Hi Olivia

The sun can make us feel worse. I always use a sun block 40 or 60.
Yes, I used to have lots of chest pains. Sometimes I was in so much pain that I could hardly breath. The doc thinks the pain is caused by pericarditis/pleuritis.
Normally I take anti-inflammatory medications for it.
Since I am on Plaquenil the chest pains seem somewhat better though.
Are you on any medication for your lupus?

Hugs

Maura

[AnM]

Hey olivia & Welcome!!

I understand the sun having bad affects on u, especially making u more tired. I also get an affect from the sun, making me feel worse, and Especially more tired. i hate it. Alhtough, i don't sit out in the sun, and cover myself up.

I have had chest pains. But, u shoould ALWAYS discuss with your docs. any new symptoms; especially chest pains. Many of us have had Pleurisy/Pericarditis, but u can't say for sure till u get it checked n talk to the doc.

I hope your having a good day. Keep posting n coming to chat.
Take care,
Alicia :coffee: :flowers:

[LWL2002]

:wave: .....Hello Olivia! Welcome! Its nice to meet you! I love the name Olivia! Hope to see you in chat!........Laura

[floydreka]

HI THIS IS FLOYDREKA!!!!!!!!!


WE ARE ABOUT THE SAME AGE . I AM 13 AND I WAS DIAGNOSED
WHEN I WAS 11 . i SO UNDERSTAND YOU WHEN YOU SAID HOW YOU
FEEL UP TODAY AND DOWN TOMORROW. WELCOME TO THE SITE . YOU WILL NOT HAVE TO WORRY ABOUT MAKING FRIENDS BECAUSE EVERYBODY IS FRIENDS HERE AND YOU CAN COUNT ME AS ONE OF YOU FRIENDS!!!!!!!!!!!



:welcome: :woohoo: :welcome: :woohoo:

[Robster1]

Hello Olivia,

My name is Robyn and I am 10, I don't know how long I have had lupus but I was dx'd 6 weeks ago.

I also have good and bad days, and on good ones its hard to stop before its too late :rolleyes:

I would also like to make friends as no one else understands how I feel, and most people with SLE are adults.

Bye for now,

Robyn

:flowers:

[Lins87]

Hey ....

My name is Linsey and I have had Lupus for almost 2years. I dont have that many symptoms however I find that when I get the "Butterfly" rash on my face its hard to stay upbeat and have the confidence to go out.
I am just about to turn 18 in 2wks time ..... so Im at that stage were I will be going out to clubs etc. This is when I find it hardest to cope, even tho my parents always say you look fine, it's still doesn't convince me.
Olivia I feel the same as you that no1 really understands. Im hoping that by talking to ppl on here that I will be able to meet ppl that understand and will be able to help me through when times are low.

Luv Lins xxxx
:halo: I thought this looked cute :D

[livvalivva]

Hey everyone
Thanks for your great and understanding email! I really enjoy reading them. :D
Well today im not so great :( i am so sore every joint is hurting and i am so tired :sigh: so it was a day off for me! Tho im not enjoying it much. Think im getting a cold so just another thing to add to my list. But i must stay HAPPY :D
Does anyone here have bent fingers? random question i know but my middle finger on my right had is soo droopy its not funny. I had an opperation on it on July 1st last yr but the Bl**dy thing has gone back to normal if not worse! So its just really getting me down lately!
Does lupus stun your growth? because i am really short!!!!!! Only starting to grow a bit now!
Well just about a sleep. WAKE UP!!! :yawn:
Lotsa Luv to u all
Hope u all r well
Luv Livvy :love:

[QUOTE]Friendship is like wetting your pants, only you can feel the true warmth :)

[Katie l.]

hey olivia,
nice to meet you. I'm 18, and I've just been diagnosed with lupus in march, and it's been pretty crazy since then. I joined this site not too long after I found out that I had lupus, and let me tell you, it's really helped. Feel free to email me anytime, if you just want to vent, cuz hey I have those days too! About the stunting your growth thing, I would really like an answer to that too, cuz I'm only 5', and god do I feel your pain on that note. I'm hoping someone can give us an explanation
katie

[livvalivva]

Hey Katie
Nice to meet u! :shake: I was wondering where u lived? I live in New Zealand
Do you get pain or organ invlovement? I cant spell ok!!!
Had physio yesterday and was told my feet are growing wrong and i need to start having physio on my finger!! Great a!
Well i betta go
Hope you write back soon
Take care
Livvy

[Katie l.]

I live in Manitoba, Canada.
And no i don't get any pain, but I have chronic kidney disease, so i'm not that better off. Sorry to here about your feet and your finger. I can't believe you've had lupus since you were 3, how did you find out about it? Wow there's a lot of us who are under 20, and its amazing the amount of stuff some of us have had to deal with. how do you deal with it all? I know that question is extremely hard to answer, but its just crazy the amount of stuff people at our age needs to deal with, nevermind this extra heavy brick we heave along with us. Aren't we just so lucky?
talk to u soon

-katie

[livvalivva]

Hey Katie

Um well i think my 1st symptoms were they whole butterfly rash i was covered in it and i didnt like to crawl or be picked up. Luckly we had a really gud doctor who picked up lupus. I think having it at such a young age has helped me deal with it cuz i dnt really know what it was like to be 'normal'. Its taken time but now im kinda used to my lupus but i do have dats when i will just get upset about it and think 'why me' but i just try to look on the postive side of life. My motto is 'There is alway someone worse off than u!' At times it hard to remeber that.

I was wondering what symptoms do u get with u lupus?
Im finding the teenage years are hard to handle sometime just with all the pressure of stress and school. R u working? Live at hm? Do ur friends understand? Sorry i ask so may questions its just im the only teen where i live that has lupus so its great to talk.

Hope you write back soon
Luv Livvy

[Katie l.]

Hey Olivia,
I know! I love this posting thing, isn't so great to just let it all out and finally talk to someone who understands.

Anyway, since we're getting to know each other here, I'll tell you and bit about myself. As you know I was just diagnosed with Lupus in march. I've so far, (that I know of) have only had two major flares. When I was twelve, I was diagnosed with Iritis , which is arthritis in the iris of your eye. At that time they tested me for lupus, but said only one test was positive. After two years the disease finally cured itself. So recently when they did a kidney biospy on me, they realized that I have chronic kidney disease and that it was lupus that inflammed them and since we didn't know about it and it wasn't treated, my kidneys are scarred and are slowly failing. So as you can tell, it's been a little shocking for me and a lot to deal with. I don't have visible symptomes of lupus. I have my tired days and I do get lots of headaches, but other than that, nothing on me hurts and no rashes of any sort. To tell you the truth, if you were to look at me, I look completely normal.

I also live a normal teenage life. I go to highschool (my last year of course), and I live at home with my parents and younger brother. I have a part time job in a homehardware store. This year I've gotten very involved in my school and I'm constantly busy with something or another. I do portuguese dancing and have all my life, well actually I haven't in the past 5 months because I'm now anemic and my blood pressure's very high, so it's a little difficult to do. I completely hear ya on the stress and school thing. School can be hard to cope with sometimes. I never had a problem until this year when all of these problems started arising. But I try my best, and ,my grades haven't slipped that bad.

Um... what else is there to know about me... Oh the understanding question. Well I have a confession to make. Only one of my friends knows that I have lupus. Most of the people in my life know that I have kidney disease, and I probably wouldnt have even told anyone about that if I wasn't in the hospital for it(which is another completely long story, but lets just say my kidney biospy had complications and I was stuck in the hospital for over a week because of it). I'm scarred to tell people about what I have. I guess in your situation it's a bit different because you've had it all your life. But Olivia, I really don't want people to think different of me if I tell them. I don't want to be known as "the girl with lupus". I dont want people to have pitty on me. I mean the whole kidney disease is enough to hear about. "OMG do you have to have a transplant now?" "Can I donate my kidney?" "When do you start dialysis?", everyone just jumps to conclusions and it makes me sick. Keeping Lupus a secret was my parents idea. There are some days where I wish I could tell someone and just let it all out, but there are others where I'm relieved I haven;t told anyone. I guess I just need to wait till I feel completely comfortable I guess. I don't know what do you think? How do your friends and family cope?

Well now that I've given you my whole life story, write back and let me know a bit about youself and what your life looks like. Do you have a boyfriend? And if so, how do you play the issue into the relationship too? Do u think I should just give up on dating, because lets face it, now that my kidneys are failing and I have a disease that can cause so much more in the future, I've been wondering lately if it's even worth it. I mean that doesn't sound very positive at all, but trust me I do want the best for myself and I want to live my life to it's fullest. I'm planning on going to university next year and I really want to concentrate on that. Maybe its for the best if I just avoid dating all together and enjoy all the other things I have planned for my life. I dunno, any good advice on that?

can't wait to hear from you
-katie

[livvalivva]

Hey Katie

Great to hear from you. Wow u must be able to type fast!!!
Ok heres some about me. Im the oldest child in my family and have 1 younger brother. My family are really great with me and are really understanding. They leave it up 2 me to see how i feel.
My friends are really great they all understand (most of the time) I have 1 best friends Josy she has been my bud since primary school years. She doesnt not got 2 my high school tho. I go 2 an all girls cathloic school. My friends at school are good. But some understand more than others. Some get a bit jealous 2!!!
I thinks its fair enough if u dont want people to know. I mean i have days when i get sick of people looking at me cuz im limping and sometime i wish they would cum up 2 me and give me a big hug and say it will be ok!!

I had physio yesterday about my finger because tendants im my finger have dropped and it on a 90 degree angle. So i got a little green and pink splint made for it. And now i have 2 go and visit my surgeon again i have it opperated on 1st July last year. May need another opperation.

Suposed to have horse riding 2 day but didnt go cuz my knees is so swollen. So nt a great day.

Umm i dnt i have bf im not really insterested at the mo. Boys seem so imature not really wot i want!!!

Well Katie i have 2 go goin 2 watch scary movie 2 LOL
Take care hope 2 hear back soon
Luv Livvy

[Katie l.]

Hey olivia
How are you doing? Sorry to hear about your lousy day, I've sort of had one myslef too. I'm feeling very very tired today and I had to work for six hours, so now my knees and legs are aching like crazy, I probably should have called in sick cuz now i'm paying for it big time. I think i'll get my aunt to message them or something.
You know, even though you're younger than me and live in a completely different country, we still seem to live similar lives. I too have a younger brother, me being the oldest, and my best friend has been my friend since elementary school and now we go to different high schools. So hey, nice to meet you twin sis.
Well write back and let me know if you're feeling better. When do u go see the surgeon? I'm doctor free for a couple of more weeks. I see my nuphrologist june 7th. isn't it so nice to be doctor free even for a little while? One thing about this Lupus thing, it makes you apreciate all the little things.
well i'm going to my aunts to sleepover with my cousins, i'll write u tuesday
BYe!
-katie

[livvalivva]

Hey katie

Wow we might have been separated at birth lol long lost sisters!!! Haha
Where do u work? Well im goin 2 c him on the 23rd of June still a long way away. Hes all booked up till then. Its nice 2 be doctor free im agreeing!

Well came hm from school and had a spa its so cold here sitting here in my froggie pjs lol. Im still not great my foot is so sore i can barley walk. Must be having a flare up at the mo. I had 2 bus hm and there were no seat so it was very uncomfortable.

At school we have our meningitis (sp) injections 2morrow. All my friends are freaking out but im like ohh well just like a blood test haha.

I hope your feeling better and had lots and lots of fun with ur aunty and cuz!
Bubi
Livvy

[livvalivva]

Hey katie

I hope your ok havent heard frm u 4 ages
Write to me soon k!
Livvy

[lupuskid2005]

hi olivia my name is melanie and i am 14 too!! i was just diginoised with lupus about 2 weeks ago!! i live in illionis but my mom has some friends who live in new zeland!! she has always wanted to go and see there!! it is her dream vacation lol!! i am still pretty new to lupus but it would be nice if we could talk sometime!! since it sounds like u really no what lupus is... wb plz
~melanie ;)

[livvalivva]

Hey Melanie
Nice to meet u! :shake:
I was wondering how lupus affects you?
I get joint pain and get really tired wot about u?
Its so cold in new Zealand at the moment lol
Well i hope you write back
Livvy

[lupuskid2005]

hi olivia!!
lupus doesn't really affect me yet b/c i just went to see the doctor and she told me that she susspected that its lupus like she was 95% sure but she wanted to still run alot more tests but i got a call from her last night and she told me that she was for sure that i have lupus.. but i am already started on meds for it... since i have not had it for very long i have not really had what is called a flare up or it has not really affected me much... how does your lupus affect u? it would really be helpful if u could tell me some of the things that flare yours up.. even though alll lupus is diffrent!
well g2g nice to talk to u
wb plz
~melanie

[rwb200]

I would like to add my welcome to you and all of the other new members who have responded as well.
I hope this has helped you to see that you are not alone at all. In fact it is a rather large group and there are probably many others who are in your area and have not been able to find this site as of yet.

We are always here and if you need to talk or just want to say hello and get a friendly resonce please join in at any time.

[livvalivva]

Hey i was wondering if any one had heard from Katie I? :erm:

[livvalivva]

Hey melanie
Um well if i get a flare my joints usually swell up and i get really weak and tired.
Most of my lupus is in my joints. Meaning i get really sore knees,feet,wrisits,fingers etc. I aso get very tired.
But ur right lupus is different for lots of people!
Try to stay postive and happy!
Take care
Livvy
Post me back soon :flowers:

[lupuskid2005]

hey olivia how are u?
i am doing pretty good i had my 2nd flare up today it was not to bad but i have a rash and some muscel aches that hurt kinda!! well sorry that it is so short but i am having a gradutation party today for my family! i will talk to u later ok!!
ttyl
~melanie

[livvalivva]

Hey Melanie
Sorry i havent written for ages
Ive been kinda busy
I hope your doin ok?
Write to me sometime
So we can catch up
Looking forward to hearing from you
Livvy

[Angel_gurl]

Hi olivia I live in wisconsin in the us and have had lupus since i was 8 i am 13 now i am also goin throgh kidney failure so if you ever wanna talk im here for ya
:love: hope you find lots of friends bye

[lupuskid2005]

hey olivia!!
omgosh i haven't written in so long and i am so sorry! i have just been so busy! i am out in california right now visiting my aunt,uncle, and cousins! i love it out here! did u say that u live in new zealand? on my way flying out here i sat next to this guy who was flying out to new zealand on business! well i hope that all is well! ttyl
hope that your winter is going good too!
lol
~mel

[plainwhitets]

Hey,

I'm Amy, I'm 18, I'm from the U.S. and I was diagnosed when I was 12.... I'm a newbie myself... I joined after my first major flare up. It's hard to blelieve I never had a real flare until 6 years after being diagnosed.... lupus is a crazy little thing. I should really join the the chat sometime.


*hugs to the world



-Ames

[livvalivva]

Hey Amy
:welcome:

Thats werid that u didnt have a flare u till 6 years.
I havent written in here for ages so its gud to get back in the flow of it lol!
R u still in school?
Here some more about me well i love horses and go riding every saturday.
Ive had lupus 4 ages so am very used to it. At the moment i have my middle finger in a cast 4 8 weeks cuz my tendants (sp) have drooped lol my friends love writing on a new cast every week :D I have so much homework at the moment and its only the 1st week back so am a little stressed at the moment
Well i betta go
Please write back
Livvy :flowers: