View Full Version : Hey peoples :)
08-09-2011, 03:04 PM
Well hey there guys :) my name is Rebekah. Im 16 years old and I have been diagnosed with Lupus for about 10 months now. Im not real sure how im supposed to 'introduce myself' since i have never even been on one of these sites before. Im homeschooled, but i think i would enjoy going to public school. I have too many dr appts that my mom said I'd miss too much school and probably would be best if I did school at home. I lived in Brazil for about 3 1/2 years. We (me and my family) did missionary work. In Brazil I would always say that something was hurting, or my hands were shaking and everyone pretty much blew it off and said 'you will be fine.' when i came back to the US i was having such a hard time walking and getting out of bed that my mom took me to the DR and they started the testing. First they thought RA. Then they thought it was a parasite. After about 6 monthsof DR appts, MRI's, a zillion blood tests and tons of frustrating melt downs, in October i was diagnosed with Lupus. The dr didnt explain what it was, so for 3 days I walked around my house thinking i was gonna die! Then after some quick google searchs, I figured out that not ever case is fatal and i was so realived! Im trying my hardest to be a normal kid, but when i tell people I have Lupus, they either think (a) they are gonna catch it if they stand too close to me, or (b) that im a crazy person and no one wants to be friends with a crazy person. I dated a guy that would always use that as an excuse as to why he would be seen with me in public, cus 'I was sick' and he didnt want me to ruin his rep. I hate people telling me I cant do things cus "i am sick". Even some of my own family members put me down because of it. I just wish I had some people who understand what Im going through to help support me. I hope God has a plan for this, and for me. Well i guess thats ME in a semi-large nut shell. Thanks for reading.
08-09-2011, 03:22 PM
Welcome Rebekah! I am so happy you found us here. There are several great teens on this site that I'm sure can relate big time to your situation. I have lupus and have a 19 year old daughter with symptoms very similar to lupus who has been diagnosed with "undifferentiated connective tissue disease", among other things. She had to go to high school part time 3 out of the 4.5 years - but still managed to graduate with AP and online college credits. Has your family looked into an online high school program that might give you some college credit, or have you considered attending part-time and doing the rest online? My daughter hates online classes, but they work well for some people.
We are doing the bazillion doctor and test appointment thing still for my daughter, after 5 years of problems, so I get how frustrating it is to go from doctor to doctor and not get the info you are looking for. The folks on this site are an incredible resource and if we could form a Lupus Collective (like on Star Trek) where we pooled our experiences for the medical profession to learn from, it would change rheumatology LOL. Until then, read through past posts and ask questions and vent all you like. Someone here is bound to have had a similar experience - and if they haven't they will at least be sympathetic (or angry on your behalf).
You might visit the But You Don't Look Sick forum: http://butyoudontlooksick.com/boards/. I avoid it because my daughter hangs out there, but she has gotten so much support and information there. It's for all "hidden" illnesses, not just lupus. It may especially help with the folks who act like idiots when it comes to your illness.
08-09-2011, 03:25 PM
Hey Rebekah =) Welcome to WHL! I'm so glad you've found us. It sounds like you've been through a lot so I'm glad that your doctor finally found out what was really going on. I was diagnosed 2 years ago when I was 16 too. Its rough and you'll find that people sadly dont always treat you the same anymore. I had similar problems with a boyfriend of mine around the time I was diagnosed because he couldnt handle how upset I was about my diagnosis. I just want you to know you've come somewhere full of people that DO understand. There's lots of helpful info on this site if you look around =)
08-09-2011, 04:42 PM
Welcome. I'm fairly new to Lupus and this site, but the folks here are amazing. You can ask all sorts of questions or simply vent and you will find the support of people who understand what you are going through. Also, in spite of all of the aches and pains and illness the folks here are unusually positive. It's very nice.
So spend some time and look around. Ask questions and make some comments. It's a very welcoming place.
08-09-2011, 05:05 PM
Hi Rebecca, welcome to WHL! So good to have you join us.
08-09-2011, 08:29 PM
welcome to our cyber family.
there is quite a few people here your age group.
i am an older person at almost 50
i have had lupus for over 30 years...... so it is not always a death sentance.
with the proper balance of meds and diet, most of us can expect to live a full life.
we have a section on ther forum for teens, maybe you want to check it out.
there is also a good section on faith.
I'm around your age as well, and like ritzbit will tell you, it's great to have teens hanging out on the forum (:
Gizmo did advise butyoudontlooksick , which has a forum. I love BYDLS, but I prefer to read the articles than to be on the forum, since I love this one so much. (: Another site that you might like is the fight like a girl club, which is a site with a bunch of stories of women (and sometimes men) who are dealing with chronic illnesses. Here's a link to a few articles on Lupus: http://www.thefightlikeagirlclub.com/category/articles-by-cause/lupus/
We also have a facebook page for teens with lupus (: http://www.facebook.com/pages/Teens-With-Lupus/172034412859180
Anywho (: I'm super happy to have you around and joining here. If I may say so, that guy you were dating was a total...well...um... Butt..head. Yeah. Butthead.
And you deserve way better than that.
People are very ignorant about Lupus, and almost all Autoimmune diseases. Many times people will think that it's like AIDS. Which...it's not. At all. But there you go.Some people will completely ignore that you have an illness, and pretend that you're completely fine. Others will think you're crazy or faking...that it's not that bad and you're just a whiner. And even others will completely almost "divorce" you, because they just can't handle it.
Basically..Lupus Sucks. Hehe.
And that's also why people here are awesome!! :D
Okay, sorry for rambling. Just uhh..welcome to WHL! I hope you like it!
I just wanted to stop in and take a moment to say hello and welcome you to WHL. I am so glad that you found us and I am also sorry for all that you have had to go through. You are correct that healthy people don't always know how to deal with us because they simply can't understand what we go through. It is such a pleasure when we find each other because we can support each other when needed.
I am really glad to to have you and welcome to our WHL family!
08-16-2011, 06:48 AM
hi rebekah welcome whl i have lupus i am 46 but my 23 year old daughter has just been diagnosed with lupus and she does schooling online i am sorry for the way you have been treated some people just do not fathom what we go through,
Welcome! I was diagnosed at 24, quite a bit older than you but can imagine how hard it must be going through high school with this. Most of my friends forget I'm sick until im actually sick...kind of a pain but guess its something we all have to deal with. Hope you find this site as supportive as I have, there's always someone around to give you advice or a new perspective on things!