View Full Version : New to site. Looking for friends
11-28-2012, 08:55 PM
Hi my name is Kelanie. I am new to this site and was kinda looking for other people who have lupus to chat with. I am 17 years old young lady. I am a senior in high school and this year I seem to be facing many problems due to my lupus. I was diagnosed with Lupus ( SLE) when i was nine years old. I also have kidney problems and arthritis and was just recently diagnosed with Fibromyalgia. I am also hearing impaired. I take prednisone and have gained much weight since i was 9. It has also messed with my growth I am 4'9 and weight about 145 pounds. Its very hard for me to go to school without being bullied due to me looking like a 12 year old in high school. I have a hard time being at school everyday. I am often absent from school due to flare ups. Sometimes I get very sad becuz I cannot due what most of my family and friends can do. I always wanted to be in a sport but cannot due to my bones always hurting. I also want to loose weight. I guess i joined the site to meet others and find out how you guyes cope and take advice.:cute:
11-29-2012, 01:41 AM
I almost asked this on the welcome post, (I'm not sure where your from or what your options are) but pertaining to the school situation, does your school offer a "home bound" program? It's a program mine had where ill students could come in a couple days a week after normal school hours & be taught by one teacher for a few hours-the remaining work was done at home & brought in next time to that teacher. I had no idea there was such a thing when my counselor arranged it so I could finish out my senior year & graduate. I'm not sure if all school systems have this in practice, but it may be worth a shot in finding out!
And being young only makes this disease harder-I couldn't fathom the things you've faced and over come since the age of 9. But you can look at it this way, you my dear are a warrior. From what you've only said above-you have fought & dealt with things many adults haven't or couldn't imagine. We all have our battles, our own flaws and our own insecurities-but if we love ourselves and recognize that inner strength that keeps pushing us onward despite the circumstances we are facing, then you ought to know how able, beautiful & fierce-some you really are. And although some days you may feel like you are the lupus, or thats what you think anyone might see, know that you are you & no matter how life changes, no matter how many curves lupus or anything else may throw your way-being you, on the inside, most of all, makes you pretty darn amazing. A book is only as awesome as the meaning behind the words on its pages.
11-29-2012, 07:01 AM
Thank you so much Bakedtater08 . This post that you replied made me feel good about myself . :)
Wow since 9 years old, i'm sorry you had to go through all that so young. I had the same problem, well still problem, during high school. I have the body of a 12 year old what was worse was that I have a twin sister who looks our age. I never got to finish puberty so I am stuck in my 5 foot body with a flat chest but I was lucky to not have to deal with my weight. Because of this I have osteoporosis now. Also my youthful look has always been my problem, like on my first day in 4th grade a teacher started to yell at me that I was in the wrong part of school and I needed to go to the kindergarten side. I'm 21 now and am stuck living with my mom because I am too sick to go back to college or work. I got sick when I was 13 so it was right at the beginning of high school. Like bakedtater said schools do a home bound program where you can go half the day at school and half at home, it was suggested to me but when I found out I couldn't do choir or because I was in advanced classes I wouldn't have been able to do that. I was lucky with the situation I was in because my school was a very small district and I only had like 80 people in my grade and my mother was the chemistry and physics teacher there. I was made fun of and it was constantly brought to my attention from people who didn't know me that I was weird looking, that I had a rash on my face, or that I didn't have much hair. Really I was too sick to care about it and my sister and mom hid a lot of it from me.
I was pretty ornery in school because when I first got sick the rumor was that I was anorexic or I had a brain tumor. So after months of being out of school and I finally came back they asked me that and I went with it for like a week. It taught my classmates that rumors are stupid and no one expected me to go with it. And honestly after high school your never going to speak to any of those people again, and I mean most your close friends too. Most my classmates are on my FB but I don't really talk to them or ever see them and we all live in a small town. It doesn't matter what they say to you because their opinions are insignificant and in some years when they grow up and look back on it they will feel guilt. Don't let those people ruin your senior year, don't let them ruin your experience there just try to ignore them as much as you can.
About your weight no matter what size just try to be as healthy as you can. Start off small, sodas and coffee are so bad for you so that might be a start.
I wish you luck and if you every need someone to talk to you are more than welcome to private message me.
12-02-2012, 03:50 PM
Hello and welcome to our family. I see that you've already been warmly greeted by some of our members and have been given some great advice. I just wanted to make sure that I welcomed you here.
As you can see, this is a place where you will find people who understand, are supportive, and are here to help you and to make sure that you know that you are important and you are not alone. Again...welcome.
Peace and Blessings
12-02-2012, 08:56 PM
Kelanie, I am sorry you have been having a rough time with all this....but I am glad you found us. This is a great community!
I am much older - but I have a daughter in high school. I wish you were at HER school - she understands what Lupus is, and would enjoy helping you educate other kids. Lots of kids (heck, lots of ADULTS) are cruel out of ignorance, not necessarily based on any real information about WHO you are. Sad, but true. Just remember that when they do mean or stupid things, they are not really reacting to YOU (they don't even KNOW you), they are reacting to a difference that makes them insecure and uncomfortable. I am sorry you have to bear the brunt of that ignorance. Someday, sometime in their lives, most of them will also have something that makes them "different" - a health issue, an emotional issue, a family issue, a lost job, whatever - and their attitudes will often soften and change. But when kids are 15, 16, 17 years old, most of them don't know any better. This is one area where you are much, much wiser than they are. I am sorry for how you came by that wisdom, but please do trust that it is a very special gift that you can give to other people.
I just hate to see a kid in pain over this stuff. You have ENOUGH pain to deal with - you don't need to feel bad about school life on top of it. So don't worry - the whole world is not like High School. Plus, being short ain't the end of the world...I am (as my daughter half-jokingly says) "freakishly tall" - always have been - and that's no picnic either! ;-) i ended up marrying a guy almost 3 inches shorter than me, and love him to death. Height is sometimes in inverse relationship to the size of a person's heart!
Okay, enough "mom-talk", LOL.... :-P
Just so you know you have company here, there are a few of us who have lost hearing to Lupus or some other complication. I went profoundly deaf in my right ear just this last April and I am still learning to cope with that. The hearing in my left ear is decent (not great), and my doc says it will probably get worse over the years - I am kind of scared about that.
So anyway - WELCOME - always feel free to come here and vent. We're here to listen!
12-31-2012, 11:10 AM
Thanks so much for sharing your story with me! You are a strong person and have made my heart melt!
12-31-2012, 11:14 AM
Thank you! Belive it or not your story cheered me up!:laugh:
hi im 21 so not that much older than you!! i was diagnosed with lupus when i was 13. i hope we can chat soon!!! oh im also 5'1 lol so i too am small for my age
05-14-2013, 06:14 PM
Hey Kelanie! I'm a senior in High school too! :) How's senior year going for you? I'm always here if you need to talk. I know alot of times having Lupus can be overwhelming. I understand completely how you feel sad that you can't do things your family and friends do. I feel really alone with lupus even though I have a good support system. It's just frustrating not being able to do what you want to do.
Hi Kelanie, I am also 17 years old and looking for friends who understand! I was diagnosed when I was 14 . I'm so sorry to hear what you have to deal with, I wouldn't wish this terrible illness upon anybody. I also had trouble with attendance at school, but unfortunately I was classed as an attention seeker and 'skiver' by both teachers and fellow students so was not offered any home working methods. I would really like to be your friend and chat about things! Feel free to message me!! :) xxxx