View Full Version : Lupus Pneumonitis

04-13-2008, 04:29 PM
My Story: I was an active cheerleader/gymnast/dancer when I entered my freshman (HS) year on the Varsity squad. I started having serious back issues but since I hade never been sick (I mean NEVER, I had never had the chicken pox, even after repeated exposure and I STILL have my tonsils) my parents and most other people kind of thought I was faking. Going into my Sophomore year I started experiencing joint pain: fingers swelling, ankles and knees so bad that on some mornings it was hard to walk. I kept most of this to myself because I'm not much to complain and I don't want to feel like a pity party. When I told my mom that I thought I had arthritis she laughed and said "you are way to young to have arthritis, baby!" ...she thought I was joking... Finally I convinced her and my pediatrician to let me see a rheumatologist. He thought I had Rheumatoid and treated me as such. Two weeks later I was hospitalized with "pneumonia like symptoms" finally this was a reality to my parents and they got me in to see a pediatric rhemuatologist at Arkansas Children's. A few months after my first visit there I had a relapse and was transported via helecopter to Arkansas Children's (from Louisiana). I didn't realize how serious my condition was until I started to turn around (for the good) and my doctor explained everything to me. I had Lupus Pneumonitis and they had not expected me to survive when I first arrived. I will never forget she (my doctor) said, "We were expecting to you go toes up!" (that was scary for a 16 year old...) I spent 2 weeks in the hospital...on arriving home I had blown up in size after weeks of straight steriods, no exercise and great hospital food.
Unfortunately, I went into a serious depression that I have been battling since my diagnosis at 16 in 2004. I have not gsined more and more weight, I have not yet gone into a remission and I have more and more problems now. But the big thing about me is that most people don't know I'm sick. I usually don't tell them because I pretty much keep my ailments to myself (which has come back to bite me a few times). I am a daytime nanny and I babysit at night 4 nights out of the week and the other 3 I'm in school. So...that's it...whoa! it's pretty long!!

04-13-2008, 04:38 PM
whoa jbr

wow that is alot. I think you need to slow it down a notch or two. Simplify your life.

You cant out run lupus ya know :lol: it will catch up to you :)

Welcome to the board. I'm sure the others will be along to welcome you as well.

You certainly had a scarey start to things. There's alot of great people here and they have a lot to share.

Have you gotten back into exercise yet? It's important to keep your body as happy and healthy as possible while walking the fine line of not over doing. Swimming is wonderful.

sick n tired
04-13-2008, 04:40 PM
Hi jbr043,

Welcome to the forum....I am so sorry that you have had all those problems....

I am sorry that you are depressed. I have problems with that and some of it is on account of my weight...pre Lupus vs. Post lupus

I have two daughters who are daytime nanny's. It is a great job for them and they love the children who are their charges...I hope that you are able to go into remission, soon.

Take care,

04-13-2008, 08:38 PM
Hi jbr. welcome. I am new here also but a long time sufferer. I am so glad they caught it and got you on the right track now. You are very young and by reading the posts here you have found the right place to have any questions answered as well as a good place to vent your feelings. Depression is a real issue and needs to be handled properly. Hopefully you are getting the kind of treatment that you need, but always remember if you need to talk we are all here. Take Care, Dede

05-10-2008, 11:39 AM
Hey jbr043

Hope you are doing well?

sick n tired
05-17-2008, 06:56 AM
Hey jbr043,

I was thinking about you. Have you made it back to the forum....I will echo SITC sentiments....Hope you are doing well.