Sunday, October 16, 2011
My daily struggle my love of prednisone
Welcome to my lupus blog. You will have to excuse my errors that I may have while writing, it is part of my lupus brain fog. I struggle everyday with this disease that has made my life difficult. I know there are a lot of people with this disease that are much sicker than I and for that, I feel like ingrate. I do feel very lucky for many things in my life, I have a wonderful supportive husband, intelligent, healthy children, I love my house and most of my neighbors, my boys go to a wonderful school. I have so many things to be thankful for, but one thing hangs over everything I do, my lupus disease. I wish I could say that lupus does not define me but it makes every decision for me, because this disease has taken over my life and left me almost useless, I am unable to control my life, lupus dictates what I can do, how much I can do, where I go, how I feel. I don't feel like me anymore I am Mrs. Lupus, it has taken so much from me. I am practically bed ridden on those few good hours on a few good days, I can go out to eat, shop or socialize however I pay for doing these normal things. I will get very ill, nausea, vomiting, body pounding and throbbing in pain, exhaustion. Even speaking to a friend on the phone can leave me in agony. Healthy people have no clue how much energy it takes for people like me to do things they would never think twice about and I am happy for them. I get told that I look so healthy and have gotten some pretty harsh remarks from people that think sick has a different face than me. I am what sick looks like because lupus hides with in me and it does show it's ugly face sometimes, if I allow people to see me with out make up, or if I could ever get off of steroids, I would get very thin. Prednisone is a devil with a pretty face, it makes me feel so much better and quickly, it gave me the ability to walk again within hours of the first dose, but it stabbed me in the back. It made me dependent on it, not in a drug addict way, in a way that my body needs it to help fight against the bully, lupus. I hate that I love this drug, because as much as it helps my disease, it hurts me and laughs at me with it's evil ways. It makes me gain weight, moody, get high cholesterol, and other things that could pop up at anytime. I try to taper but it makes my lupus symptoms so much worse as if I did not feel sick enough. It never fails every time I have a few good hours, on a few good days, I start to taper .5 mg and the fun begins. People often ask what about other drugs, especially doctors other than my rheumy, I tell them I am on many other medications but prednisone was my night and shinning armor and rescued me from the big bad lupus monster.
Posted by Mrs.lupus at 9:38 AM