Hey girls! My name is Nicole. I am 18 years old. For the first couple of years of my life, I was an active, fun girl – that is, until 2000 when I started having extreme joint pain and was always tired. For about 2 years doctors couldn’t tell me what was wrong – until I drove 200 miles to a children’s hospital in Houston, Texas.
A doctor walks in, exams me, and says “you have lupus”. I was prescribed prednisone. I gained weight, my cheeks became red/fluffy, and I lost a lot of hair. I’m constantly getting sick and have been paralyzed from the waist down 3 times but I’m going to therapy. Its hard living with it but my mom has never left my side and together we will fight till I have control over my own body!
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.
Dear Nicole, You and your mom sound like awesome people! You are fighting what is a tough disease with strength and optimism — two wonderful qualities in confronting any difficult situation. We at the Lupus Research Institute can be a resource and support to you and others facing lupus — please visit lupusresearchinstitute.org or call at 212-685-4118.
Dear Nicole, I can completely relate to the fatigue and joint pain. I thought I was just stressed, but when the diagnosis came, I was partially relieved and partially scared. My docs have found a balance of meds that have been helping most of the time (thank goodness no prednisone – yet). Then my diagnosis of breast cancer. The years of chemo kept my lupus quiet and I felt ok (I was still tired, but I was used to that!). Keep on fighting! I’m glad to hear that you have your mom there to support you – what a blessing. I will keep you in my thoughts.
I am in the same boat as you. I was diagnosed when I was 16 also and I’m 19 now. It’s beem a rough 3 years but like you I have had my mom with me every step of the way. Keep fighting!
Dear Nicole, You are so lucky to have your mom’s support. I lost my mom in 2009 and i was just dignosed with lupus this year. I really miss my mom cuz she would have been there also for me. I have had symptoms of this illness since last year and my dr never tested me for lupus. I actually went to the ER with a flare and i was dignosed. It’s hard to grasp that i have this, i get really tired just doing the simply things and no one understands. I have a sister in law that had cancer and she is my support through most of my days. I’m so glad that i found this website to see what others with Lupus are coping with this. Thank you for sharing your stories.
HEY NICOLE, MY NAME IS SHELLY. I AM 43 YEARS AND HAVE LUPUS. ALWAYS WONDERED WHAT WAS WRONG WHEN I WAS GROWING UP. BUT JUST KEPT WORKING AND DOING WHAT I HAD TO DO. AND PRAYED FOR GOD TO GET ME THROUGH THE DAY. AND HE ALWAYS HAS AND STILL DOES. IN 2003 GOT REAL BAD AND HAD TO GO SEE WHAT WAS DOING THIS TO ME. AND THEY TOLD ME IT WAS LUPUS. AND GUESS WHAT GOD IS STILL WORKING FOR ME, SO WHAT I AM TRYING TO SAY, IS THERE WILL BE GOOD AND BAD DAYS, BUT HE WILL ALWAYS BE THERE FOR U. AND I TELL LUPUS EVERY MORNING , IF YOU WANT ME , YOU ARE GOING TO CATCH ME. SOME DAYS ARE HARDER THAN OTHERS, BUT NEVER GIVE UP. IN MY PRAYER, GOD BLESS YOU!
Nicole, keep on fighting! I started having joint pain at 10 years old. 5 years later, I finally found a doctor who didn’t think I was crazy and I was diagnosed with JRA, sjogerns , Reynolds and mixed connective tissue. I was also told I would eventually be diagnosed with Lupus. Beinga teenage, was hard. I hid it from everyone. By 25 I had my lupus diagnoses. I am now 38 with two hip replacement behind me, but also two wonderful children ( I was told I would never have children). People look at me and have no idea. Don’t worry about the weight, during good times it will come off. I just lost 50 pounds in 3 month. I am in remission and plan to stay there! Keep fighting!