Age.

Well, I was 14 when I was diagnosed with Lupus . Just out of curitosity, is anyone invloved with people who were diagnosed at a young age? I very rarely get to talk to people who deal with lupus patients of a younger age. Even if you weren't diagnosed young were you having problems when you were younger?

5 months ago

I was diagnosed when I was 19 but probably started having problems around 17.

5 months ago

i started having problems with it when i was 14 i got dx at 16 but  the doctor thinks ive had problems for a while before i knew what it was

5 months ago

How did you deal with it through high school and even college?

5 months ago

Talk to your teachers/ administrators if you havnt already, because i missed many days my senior year when i was sick and got really behind in class

but i was also wondering about college.. i have a hard time staying away from partying

5 months ago

Yeah I missed a whole quater of my freshman year. All my teacher's are really supportive which is a good thing. I dance too and all my dance instructors are really supportive as well. As shallow as it seems I think one of the worst things was gaining SO much weight. No one wants to be like that while they are in highschool.

5 months ago

im not going to lie to your girls is really really hard to go to school and have lupus.. i talked to all my teachers and deans... make sure you leave them feeling like they can ask you questions about it you may as well teach them something well your at it and ive found that the more they learn the more understand teachers are. as for the partys  DONT DO IT!!!!  it messes with your meds and staying up late and the alcohol will mess with the lupus its not worth it TRUST ME. as for college its way harder than high school teachers arent as understanding i had to go to a communitie college bc i couldnt leave my doctors or be on my own.

5 months ago

katrina what dance did/do you do i was a dancer before i got sick it was my life

5 months ago

I have been dancing for 13 years and I have 2 more years left until I graduate and leave my studio.  I do tap jazz ballet and MANY variations of those. What kind of dance did you do?

5 months ago

i did hip hop jazz ballet a little tap and a little modern (i hated modern) i also participated in my schools showchoir and now im help teach/coach them but i had to give alot of it up i went 2 years with no dance on doctors orders... it was really hard to get back in shape after that

5 months ago

What kills me is pointe dances. I wasn't even supposed to be doing it for a while but I didn't wanna get behind and stuff. The good thing is I don't like ballet that much so I don't hurt myself as much with that as I could because I don't put as much in it. I figure it really isn't worth the pain if I don't even like it.

5 months ago

thats very true i was only able to do pointe for a year and a  half and i put my shoes on the other day and couldnt even stay up broke my heart!!!!

5 months ago

Awh that is horrible =[

I seemed to just be getting better at the whole pointe thing and then I got sick and got REALLY discouraged. I never let lupus control my life AT ALL but I was so far behind and I had to re-build up all my strength. I can still do it, but it's not my favortie. I really love tap and some jazz

5 months ago

yea after my 1st flare i didnt have the strangth or the energy to do it it took me a long time to get back in to it but when i did ballet/pointe was the harders bc of all the muscle control it needs but i started working harder at jazz and hip hop they were my favorite and droped the rest sometime i wish i would have tryed a little harder to get back in to shape

5 months ago

Did you go to competitions and stuff?

5 months ago

a few times but i didnt like to cuz i was allways afraid to get sick and let my team down i did it more for me and the fun of dance and music

5 months ago

my showchior competed alot and i participated in that for 2 years it was less intense and more structured so i felt that i could do that and there were lots of girls it  was harder to tell if someone was missing

5 months ago

Yeah, see dancing is actually kinda what put me in the hospital.  See, my dance studio does The Nutcracker every year. That year I was a flower which is the 2nd longest dance in the whole show and I had THE hardest teacher. I remember getting a bacterial infection and not going to school and then not eating. Then the day before my final dress rehersal my mom took me to the hospital and I was completely dehydrated so I had to stay. They let me go the next day about 2 hours before my final rehersal but I wasn't allowed to dance.  So I preforemd 3 shows that weekend and ironically I had my first rhuemy appt the day after my final show. Well, when I got there he told me right away there was no way I was going to be going home any time soon. Between the bacterial infection and the stress of my show, I was in the hospital. It sucked.

5 months ago

im sorry congrats on the flower tho thats pretty impressive im suprised you didnt get dance taking away completely right then! lol you got a good doctor mine didnt understand that it was such a big part of my life that i needed it to make me feel like me as weird as that sounds

5 months ago

Yeah, my mom was really surprised that they let me keep at it. My doctor actually likes me being involved in it, he thinks I need to be doing something to keep active. I mean after that,  I think I'm smart enought now to know I need to stop when I need to stop. My teachers are really good with everything too. They won't baby me at all.

5 months ago

haha well thats good i was never able to do that... i was allways pushing i can do it and i can do it myself and i would go untilll i did what i was trying to do or got hurt. did you doctor warn you about broken bones?

5 months ago

Noo.. he never really said anything about that. All I was ever told was I had to be careful because the healing process can take a while and possibly cause flare ups?

5 months ago

oooooo yea i took it a little to far one day and broke my ankle in 4 places i was in a cast for 8 months and not one of those walking one they put me in plaster i was TERRIBLE!!! so esp if your on steroids youve gotta be super careful

5 months ago

Yeah, thankfully I'm practically off my steroids. Point is the only time I worry about twisting something.

5 months ago

YEA I DONT WANT YOU TO STOP OR A NYTHNG BUT BE CAREFUL AND DONT DO LIKE ME AND PUSH TILL ITS HURTS LOL

5 months ago

well i gotta go to bed it was n ice talkin to u if you have ?s feel free to ask me thro here email or myspace

5 months ago

Well, I do that all the time, but I'm trying to find the difference between the pain that comes that I'm going to have to deal with and the pain that is bad and going to put me in the hospital haha.

5 months ago

yea thats a hard one to figuure out just listen to your body itll tell you want it needs

5 months ago

Yeah I'm learning that slowly.

Thanks a lot I enjoyed talking to you.

5 months ago

not a problem i remember being that age and not having anyone to talk to bout it there were sites like this then. really if u have any more questions feel free to ask have a good nite

5 months ago

i was 15 when i was diagnosed. my doctors said the average age is between 15 and 45 which are the "child bearing" years. most of the people i meet are a lot older, but it was actually common for me to be diagnosed so young.

5 months ago

i was 20

5 months ago

I started with problems around the age of 14. I was diagnosed when i was 21. Thats a long time when nobody, including your parents!! believes your ill.

5 months ago

Yeah, I know how that is. I remember having problems when I was in 7th  and 8th grade and I was told it was just growing pains.

5 months ago

I was 22 when I was diagnosed, but I first got sick sick at 19.

I can think back to really realizing I had some really bad issues about 16. Everyone thought I was just a complainer and a hypochondriac.

I am a former competitive horse back rider on a world level, my friends would all be able to party the night before and after showing and I'd be passed out in my hotel room writhing in pain. No one could understand why, my trainers would say I was out of shape and family would say I was being a baby. 

5 months ago

I was 13 when I was diagnosed. It was difficult and I missed almost half of my eighth grade year and some more throughout high school.  But, I made it through alright. And as far as college goes, I graduated in 4 years. It was difficult, but I hung in there. Now I am starting my 2nd year of grad school. I am not gonna lie, I partied throughout college. I didn't overdo it, but I got the full college experience to say the least.

5 months ago

I was diagnosed when I was 15, but showed signs something was wrong the year before. 

5 months ago

I was started showing signs and was Dx'd at 16....i was a junior in highschool. i have lupus to thank for getting into college. i was kind of a bad kid before my diagnosis.

4 months ago

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