SleepyJulie's Journal

I don't really know why.  I just found out my ANA is at 0 which means my lupus is in remission. It sounds really exciting because my ANA has always been rediculously high but my headaches haven't gotten any better even though my ANA has so I am a little confused and disapointed but it's nice to have less to worry about.  I still have to take the medicine though, if you go off when you start doing better you'll go right back down. I don't mind taking pills if I can tell they do something but the plaquinel and the lupus thing I still question.  My doctors are confident I have lupus or another autoimmune disease because nothing else would've made my ANA that high.  I guess POTS is responsible for a lot more than I  thought.  I thought lupus was a bigger deal, and it is more serious I guess, but the everyday symptoms of POTS is more than enough to keep you in bed.  Medication helps some. I don't have as many fainting episodes but I still do bad standing or walking for any time at all. When I ride in a wheelchair I do better and I don't fade as fast and want to go home after the first errand.  I used to faint 3 times on the way downstairs to get my pills lol.  Keeping them right by my bed is an easy fix!  If only I could get these headaches under control so I could handle light and reading and hearing people talk. Heres to hoping I will grow out of POTS and that the headaches will go along with it in a year or two.   I am not ready to let go of my old life and to accept being able to do a whole lot less than I used to.  I haven't even graduated highschool!  I used to be an athletic scholar and on the honor roll!    Babysat all the time and now I cannot even take care of myself!  5 years into this and still haven't got the headaches under control.  Here I come Mayo Clinic!