Lupus Support Group

So I finally caved and decided to join. I just really feel like I need to talk to people that understand what I'm going through. I'm 26-years-old and was recently diagnosed with lupus. I've been in pain for at least a year and I kept putting off going to the doctor because my insurance really isn't the best and it seemed like my family didn't really believe me when I said I was in pain. But I finally went to the doctor and they immediately started doing blood work and my physician thought that it was lupus. She sent me to a specialist and finally I was officially diagnosed. I was put on prednisone and started hydroxychloroquine. Right away the prednisone helped and I felt SO much better, but now since I've been lowering my dosage, I'm feeling the pain again. I'm just so frustrated. I'm only 26! I feel so crappy all the time and I never want to do anything and chances are, if I wanted to do it, I couldn't! I teach early childhood (that's ages birth to five) and a main part of my job is playing with the kids on the floor and dancing and singing and I'm really struggling doing a good job and that breaks my heart. I just feel like no one understands how I feel and sometimes I don't even know how I feel. I'm just looking for a little advice, support, information...anything to make me feel like I'm not alone!!

Hi and welcome to this great support site. I am so sorry that you were diagnosed with Lupus at such a young age. You have come to the right place these people here truly understand what it feels like to be sick on a daily basis. This site was such a blessing to me when I came across it in 2007 and have been on it ever since. I do have a wonderful family and friend support system at home but they aren't living with this illness and I needed some people who knew what it felt like to have these aches and pains and fatigue and fogginess and all the rest that comes with it. I hope that this site helps you find the support your looking for. I would like to suggest a book for you to read it's full of information regarding Lupus and some other auto-immune diseases "The Lupus Book" by Daniel J. Wallace, M.D.....you will learn a lot from him. Good luck to you

Eva

Hi Teresa. I too am sorry when someone needs to join this group. We surely do understand what you live with on a daily basis. And being a preschool teacher is hard work when you are well. Prednisone is a wonder drug but does have long-term side effects. Any questions just ask....there is someone here to answer almost any question.

Hi and welcome. It is very good to be able to talk to other people who really understand. It is real hard when you have one of those "but you don't look sick" problems. Here you can vent or share good times. Getting off of prednisone can be hard, but hopefully after a while it will get better. It takes a while for you body to readjust. I hope you find this site as much of a help as I do and that you visit often.

Alison

Post edited by: redhairali, at: 04/07/2010 07:18 PM

Hello and welcome to the group. I'm glad you found us! This site is full of people that can share experiences,give advice and empathy. I'm sorry to hear you're feeling bad again. I hope your rheumy can get you on a treatment plan that controls your pain better!

Take Care,

Amy

Welcome,

How can you keep up with all of those kids. You must be in so much pain.

Welcone to our group!! Gen

keeping up with the kids is VERY difficult! i'm normally the most patient person in the world but i find myself having difficulty keeping my cool. it's definitely a challege...even before lupus it was a challenge...now it's just full of different ones. I still love what i do and am thankful to have my job, I just have to slow down. thankfully my pain isn't as horrible during the day as it is at night, so usually i can dance, sing, and play my way through it.

I am also an ECE educator and understand where you are coming from. I did have to amke alot of changes in my career and what I can do getting off the floor is impossible and even getting to their level is challenging. Today I am a site supervisor and have found that is better for me. Dont give up medication helps alot. Take care of yourself let your team know whats going on when you have bad days and continue to do the best that you can