Energy

Sorry its been so long since my last post. We have had LOTS of snow here and the kids have been home from school more than they have been at school since the end of January.
I am holding steady. No major incidents since my neck swelled up on me a few weeks ago, compliments of the Lupus. I go back on Tuesday for a Rhemicaid infusion. I think it might be helping some, but not a lot. I have a few good hours a day now, which is more than what I did have. I can shower, put on some makeup and cook supper. By the time I get the kitchen cleaned back up, I am beyond exhausted again though. I hate this disease, I have decided. I just want to be a normal person were normal abilities. My hubby and kids want to go away somewhere for a weekend just to get away. And I am afraid to. I know what going to the doc does to me and that is only an hour and a half drive. Where do I muster energy from to ride in a car for four hours one way and then go to an aquarium where I have to walk around all day? And no. I refuse to use a wheelchair. If I can't walk, I just won't go. Yeah, its stubborn pride. But on most days pride is all I have left! Would love to hear your thoughts, suggestions, recommendations.
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Desperation

Does anyone ever feel sheer desperation? I do. I have been fighting this disease, trying to get it into remission for two years now. I am tired. I am so tired of fighting, struggling, being sick, being weak. If the disease doesn't make you sick, the meds will. I want to be normal again so desperately, but I don't know where to start. I tell myself if it mind over matter, but as soon as I push myself to do what mind is saying needs done, I end up sick and in bed. Sometimes I think God is punishing me for things I have done wrong in my life. I am a devout Catholic girl, so compared to others, my wrong doings are slim. I want to scream and cry most of the time. But I cover it up by joking around with everyone. If I keep smiling, then no one knows I am dieing on the inside...............