Finally some understanding....

[LuckyMisfit]

Geez, i dont know what to say that hasn't been said already. I was 14 or 15 year old Female style_emoticons/<#EMO_DIR#>/tongue.gif when i got this disease and now im 18 and Graduated! last Friday! very exciting... but last night was the worse pain of my life and so i went online to seek undersanding this morning. Sure your close loved ones say they understand but really they dont have a clue but its sweet that they try. I see all my friends running around and partying cus its graduation and all. I acually did have 2 good days in a row which was amazing. But i wish that i could play..or go to the beach and be in the sun.. i went in the sun last thursday and now my face is red and swollen still. I try to let it not hold me back but i cant walk as of now so i have a doc. appointment on friday the day of my concert so this is the first time it might hold me back from doing something i want to do and its upsetting. I use to go to concerts and jump around in mosh pits with the leather jackets and spikes and mohawks... now i just sit and listen to the music but i miss crowd surfing and everything. As long as i got the will to have fun through the pain i can do anything...i have ozzfest next weekend. But i think as i get older i will lose the will to fight and have fun through the pain.

I use to be a BMX champion when i was 7 years old. It was the only thing i could say i was truely amazing at was BMX racing. I did that for 7 awesome years, going from state to state racing was the best times of my life....it was my entire life. Now i cant even ride my bike. I was gonna make it a career and turn pro winning up to 20,000$ a race. That was the life for me. But now lupus has taken that away from me. I want to race so bad and every summer i say "ok im gonna race again" but it never happens. You never know if you cant get up that morning. Thats also another thing thats been taking me down lately.


Other then that all....i just wanted to get out what most people dont understand

*Acey

[Mariposa]

<span style="color:#6666CC"> Welcome to the forum LuckyMisfit,

1st of all, CONGRATULATIONS on your graduation! style_emoticons/<#EMO_DIR#>/woohoo.gif

That is a big accomplishment and you should be very proud.
Next, don't let this illness shatter your spirits and work with what you can do. style_emoticons/<#EMO_DIR#>/wink.gif
You have the love and support of your family, plus your friends and now US!
I definitely found more support and understanding here.


There are times that I feel the same way you do because I have a son; my joy!
This summer was supposed to be fun. Baseball games, water park visits, making sandcastles in the sand, etc...
But now I can't do it and he's a little frustrated. (By the way, I'm older than you and have a family style_emoticons/<#EMO_DIR#>/cloud9.gif ) We just do the best we can and look forward to sunsets. style_emoticons/<#EMO_DIR#>/cool.gif

Acey, I'm impress about your BMX racing style_emoticons/<#EMO_DIR#>/ok.gif That's great!
But I'm sure there are other hobbies you like or would like to try. Right?


Well, I hope this message finds you well today.

Take care style_emoticons/<#EMO_DIR#>/wavey.gif </span>

[helloos]

http://i45.photobucket.com/albums/f61/joker20001/55257.jpg

[SueC]

Congrats!!!! style_emoticons/<#EMO_DIR#>/thumbs-up.gif on ur graduation lucky....

I understand how you feel right now coz' I've been throu the same thing. Well, most of us who were dx at young hv to go throu tht awful experience. But don't be upset by it. Keep ur optimism-shield up and try to stay focused on sth else, like ur studies. When lupus invades ur life, we hv to adjust a lot of things.Tht sucks! But tht doesn't mean we can't hv fun. We could always find some other way around. Like biking for eg, is there any indoor court, like in those x-games with grounds bent upwards like a tunnel cut half? Mayb u could ride ur bmx bike there. style_emoticons/<#EMO_DIR#>/wink.gif ****, it'd even b cooler! style_emoticons/<#EMO_DIR#>/tongue.gif Just tryin to help... style_emoticons/<#EMO_DIR#>/bigsmile.gif

wishing u'll feel better somehow... style_emoticons/<#EMO_DIR#>/hehe.gif


Sue
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[Nell]

Hi LuckyMisft,

I'm so sorry you're having so much pain at a time that should be so carefree. You sound like a brave person! I don't have SLE but I come to this site due to concerns that my daughter is somewhere in the ballpark of having this disease. It strikes me that those, like yourself, who develop the disease early have to grow up very fast and probably understand alot of things that most adults aren't comfortable with. There just isn't anything fair about this disease and that is all the more apparent when the onset comes so early. I think that you will find ways to hold on to your spirit and your desire to keep going day by day. And connecting with all the good people on this site will help. style_emoticons/<#EMO_DIR#>/smile.gif I really do believe that. When the dark worries begin to plague me I try to "get out of my head" with music or whatever (I love to cook) just to shake the fear off and come back to myself. Have you ever heard of Full Castastrophe Living by Jon Kabat-zinn? It's a meditation program for people dealing with chronic pain (or other things) and I'm finding the book and tapes really helpful.

I'm imagining you'll hear from quite a few folks who are your age or are still in high shcool who can completely relate to what you are going through. I also know there are quite a few adults who post who were diagnosed at 14 or so and I hope they can offer you some encouragement about life with SLE as an adult.

Congratulations on graduating!! style_emoticons/<#EMO_DIR#>/goodvibes.gif

Nell

[floydo]

Hi luckymisfit

Congrats on your graduation,

a few weekends ago i went to download 2006 ( a huge festival in the uk ) and i was a bit unsure about going in a moshpit or jumping around because of my kidneys and other factors but i had been there 3 times before and thought i could handle it. i gave it a go and i could! Despite being 13, i had a gr8 time but after that i stayed out of the crowds entirely due to the blasting heat, and i got sunburnt pretty bad which gave me a rash and a near flare up expierience.

But overrall i have just learnt to have as much fun as possible but not to overdo it and get myself burnt, i was blistering and everything, even though i was covered in factor 40 sunscreen!

Pains are something that happens but we all deal with, but with lupus, we are all burdened with the worries of "is something wrong" and "does this mean somethings going on inside me" and other things that normally turn out to be barely anything.But sometimes you just wonder 'why me' and then its when someone tell you that people have worse, and it normally doesnt seem so bad!

get well soon and i hope you are lupie pain free very very soon
Floydo
ps enjoy ozzfest