Hi from Ottawa Canada
Hi - I am sort of a new member. I have been reading/posting on the site for about a year. I have to admit that it has taken me a few years to gain acceptance of the diagnosis and to not be afraid to read about all the different problems associated with Lupus. It really is so hard for all of us.
A bit about me:
Am 35 years old, diagnosed at 32 after the birth of my second baby boy. (feel lucky that I had the babies first - although hard to care for them) Have a great husband though.
Problems include: serious joint involvement, blood counts, kidney involvement, heart valve collapse (maybe not lupus? - doc thinks medication related), major fatigue, hair loss,malar rash and major nausea.
Past 4 months have had better times post Rituxan and light therapy treatment (UVA-1). Still have joint pain - have reduced prednisone from 30 to 15/13mg so am feeling somewhat encouraged.
I am past the depression and extreme fear that plagued the first two years so am happy to offer advice and the experience that things will get better. I am also a big proponent of light therapy. I have set up my own lamp and while it is not cheap - it works to combat fatigue and helps cut back on drugs (and subsequent costs). Also I think that vitamin C really helps me too as far as supplements go. So if anyone else is in Ottawa canada and wants to try my UVA1 therapy, let me know. Good luck to all. Here's hoping for a medical breakthrough on this lupus thing!
Hello Karen and Welcome to our family. I am happy to hear that you have made it past the depression, it is a symptom that many of us suffer. Yes, we all have a difficult time with this disease because it is so unpredictable and affects each of us differently. And, beleive me, we truly understand how it feels to have others tell us that we are lazy and/or whiny!! That usually comes from those who have no idea what Lupus is or how it affects us!
You will never find anyone here who says any of those things to you or about you!
I recognize your name and I know that you've been around for a while. I am glad that we have been able to help you and that you feel comfortable here. I hope that we can continue to give you comfort, support, information, understanding and to let you know that you are not alone!!
i just joined today and i am from ottawa as well - i'm 38 and was diagnosed at 14 so it has been awhile living with (despite) lupus
i'm glad to hear that you have found something that works for you - i've tried pretty much every drug and every alternative, natural medicine and am still around to post here LOL