Hello from Colorado!!!
My name is Nikki! I'm 21 years old, I was diagnosed with Lupus when I was only 15 years old. I was in Disney Land with my family, and one morning I woke up and my legs were swelling like crazy. We didn't think a whole lot about it, we just kinda thought that I might have been gaining weight. So, when I got back home I drank a ton of water and lost 10 pounds so we figured that I was fine. Well, about two weeks later I went on a trip with the youth group from my church and I started swelling again... Even worse this time. When I got home my mom called my doctor. When we got there he had no idea really what was going on so he made me go though a zillion different tests. He got my lab work back and saw that I had very little protin in my blood, and a lot of it in my urine. So, he sent me to a kidney doctor down in Denver at the Childrens Hospital. He told me that with the way my labs looked I could have one of two things... Small Change Disease (Which is what I wanted... It goes away with time and treatment) or Lupus... I was scared to death when I hear the word Lupus. Lupus? What the heck is Lupus?! So, I went home and my mom and I went online and did a search for Lupus... The first thing I read "LUPUS: A Deadly Disease" I freaked out... I went back to the doctor the next day and I found out I did in fact have Lupus. I've learned sense then that I was very lucky when being diagnosed... I knew within about a week or so that I had Lupus, I've heard horror stories from people who are going on like seven years and still aren't sure if they have Lupus. I'm doing pretty good with my Lupus now, just taking one day at a time! I'm really lucky because two of my really great friends also have Lupus, so it's awesome to be able to have that support I get from them! One of my friends actually is the one that told me about this place, so I decided to check it out! I love meeting new people, I love meeting new people with Lupus even more!!
Hi Nikki :lol:
We are so happy that you are here and that your friend recommended us to you.
Yes, you are very lucky that your Lupus was diagnosed quickly and found early and that your treatments have started.
There are so many of us who have lived many, many years with Lupus and have lead relatively normal lives. You will have to make some life style changes in order to manage your Lupus and avoid flares. But, those changes should not mean that you cannot have a full and happy life!
Do not let the horror stories scare you..with new treatments and discoveries, managing Lupus is becoming much easier!
Please come to us at any time that you have questions or just want to talk..we are always here!
Peace and Blessings
Thank you so much! It's great to know that there's people out there that know what I'm going though and that will be there when the going gets tough!
Nikki, welcome to our support group! This is best place to find answers and just have someone to talk to who understands exactly what you feel like!
It took almost 5 yrs for me to get a firm diagnosis of Lupus. I have the brain form of lupus which is fairly uncommon. Most people I've heard from who have lupus have the kidney involvement. I had the joints/butterfly rash/positive ANA for several yrs. Last year I started having seizures and after many tests including an MRI and lumbar puncture, my rheumatologist diagnosed me with lupus. She thought at first that I could possibly have MS and that's why she ordered the lumbar puncture. I did 6 mos of Cytoxan and am now on Cellcept and Plaquenil for my lupus. It is controllable as long as you listen to your dr and listen to your body. I recently had hip surgery and ended up with staph infections 2 times now! So frankly the last year has been a living hell but I know it will get better!
Welcome we are glad to have you join us!