hey, i'm new...
I was just diagnosed with SLE about a month ago, and decided to join a forum after discovering there are absolutely no lupus support groups in my area.
I'm 19, and was in the middle of my freshman year of college when I had a flare that caused me to go into kidney failure. It took about half of my second semester to get diagnosed, mostly because my general doctor didn't call me when I got a referral to a rheumy, then did so in the wrong place (I was at school six hours away from home). Spent about a month travelling back and forth for appointments and tests, then when we finally got a diagnosis, discovered I had to withdraw from school and move back home for the treatments. I'm on chemo (cytoxan) thru september, and on prednisone and several other medications. It's kind of frustrating being back home, my mom likes to play helicopter, and my dad has a bit of the "you look fine, why aren't you more active?" attitude, but I know it could be worse. Actually, I consider myself blessed in a way, that I had such a dramatic flare so early, means I didn't have to deal with years of people telling me it was all in my head. On the other hand, it makes the job hunt much harder... That brings me to about where I am now. So... hi!!
Hello and Welcome DeannaC :lol:
Since you are now back at home, are you going to try to continue your education by enrolling in a school closer to home?
Now is the time for you to start educating your parents about Lupus (particularly your Dad) so that you will not have to deal with the "But You Don't Look Sick" attitude. Educate yourself and, at the same time, keep your parents informed and educated. There are several good books that you and your parents can read:
*The Lupus Book: A Guide for Patients and Their Families (Hardcover)
by Daniel J Wallace.
*The First Year--Lupus: An Essential Guide for the Newly Diagnosed
by: Nancy C. Hanger
*Living with Lupus: The Complete Guide, Second Edition
by: Sheldon Paul Blau, Dodi Schultz
*Lupus: A Patient Care Guide for Nurses and Other Health Professionals
by: National Institutes of Health
*Systemic Lupus Erythematosus, Fourth Edition
from: Academic Press
Also, you can come here at any time to ask any question, express any concern, vent any frustration or to provide support. We are always here and there will always be someone to help you and to make sure that you know that you are not alone!
Peace and Blessings
Welcome to the Forum! I'm glad that you found us!
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!
I am going to be seventeen years old in September, so our ages are "similar-ish"!
Welcome! You will find the people on this site supportive, funny and knowlegable about so many things. I'm glad you are here!
Have you thought at all about online school? A lot of Universities have online classes available. Just a thought--
I'm going to be enrolling in community college for the next year or so, online classes are debateable (I just don't know if I could motivate myself to actually DO anything in them...).
My dad actually bought a couple of those books, he just hears that the dr says I'm doing well and thinks it means I'm back to my normal self. And he's just not naturally a good listener, so explaining doesn't always work. But it could be worse, he's at least trying to educate himself on it, even if he doesn't understand it.
Welcome-you've joined a great family. Lupus is hard for those of us that have it to understand so you can imagine how others understanding will be :roll:
But we're here to support you and together we have not choice but to make it throught.
Hi, Deanna, and welcome. Sorry to take so long in welcoming you, but now that the kids are out of school for the summer, things are a little crazy at my house. It's frightening when you are first diagnosed with lupus - I hope having this forum makes it easier for you to cope.
I'm new here, too--and I have two daughters your age... (One is 19, the other about to turn 18...) I have lupus/autoimmune vasculitis, and my daughters show some signs of autoimmunity problems, too. My younger one struggles more than the older one... she had significant circulatory symptoms...
Anyway, I know from them how disheartening it can be to have these things go on during your college years. (College and "growing up" is hard enough as it is...)
I hope you have a peaceful weekend with your family. (Oh, and your dad being in the "you look fine" mindset--well, that is probably him not being able to "deal"... so give him a hug and understand that as a parent, it's super hard to see your kid sick... especially if there's nothing you can do to help--you know how men like to "fix" things...)
Good luck with the job hunt.
I just wanted to comment really quickly regarding school and the rest of your life in general. This is just my opinion, but I say, do whatever you feel good enough to do. Don't let fear or doubt decide for you. BE HAPPY!
I was diagnosed when I was 18-senior year of high school. I was told I wouldn't be able to do a lot (college, kids, etc). Now, I have a Master's degree, a wonderful husband, and two great kids. This is not to say there weren't some vey hard times, but a supportive family helps a lot.
You never know how long you have....so enjoy.