It is very hard and very confusing in the beginning. You want to know what your body is doing but for some reason they just can not see the whole picture yet. When I first got sick we actually did a spinal tap.............that is very extreme and you will probably never need one. They could see the disturbance right there in my DNA so the referred me to a rheumi. At my first appointment he told me to think of my disease as a seed. It has been planted and is there but what seed it is time will tell. He told me you have to wait as the leaves pop up, stem grows and finally shows itself. It is there but until they can see it active it just needs time. As the person who feels so yucky that is very hard to hear. I always want to know what is going on and I want to feel better. I also would google until the cows came home and all that did was scare me like it has you. So, walk away from the computer.......or just the google you are doing about everything. What is there is there and you will find help and you will find some relief it just takes a little longer than we would like. Just hang in there and vent to us whenever you need to! We are here for you and to help you get through this process. You are not alone and we all have been there so use us as a resource to bounce ideas off of us and remember we are now part of your very important support system!!!!!
As I grow to understand life less and less,
I learn to love it more and more.
Age 29, Lupus for last 7 years
Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram