Pain truly becomes a part of everyday life when you are living with lupus or any chronic disease. We live in a society today that tends to believe we should not experience sickness or death. In past generations patients were treated at home. Family members would watch over them and even the children would come gather around to watch the person die. Today, when people are very ill they go to the hospital. The visits by children are usually only for a little while. The children do not see the sights or the smell of the diseases. We have become a society where it is not normal to feel pain. We expect not to expierence sickness or any bad expectations. But, these things are very real. With lupus, physical pain is bad enough, but emotional pain is perhaps even worse. This pain makes you feel like a victim. In society we can get rid of the physical pain but what about the emotional side of things? It is at this time with a disease like lupus that we can get in trouble. It is hard to handle because pain is pain. When you are going through it there is no distinction. People believe in this turmoil that Jesus has abandoned them. I believe it proves he hasn’t. He is transforming my life and the lives around me. Pain cannot always be taken away. We cannot run from it, we have to deal with it. Now, with title of lupus I feel it is even more important to have and use God’s characteristics such as the capacity to love and to be loved, to think, to feel and to act with our own free will. I hope with this image I can focus on my internal worth.
Have I told you today that I hate Lupus? I hate waking up, walking out of my bedroom and hearing….Nothing. Everyone has already started their day. I look around the house and all I see is a mess. Someone forgot their Friday folder, Someone left the milk out, and cloths are everywhere because of course nobody folded the cloths in the dryer so they were missing all their essentials. Sometimes it feels like everything is crumbling around me. Did I tell you I was a perfectionist? I might have forgotten to mention that. I guess that is getting better because before if I saw my husbands cloths lying in front of the hamper I would lose it. I am not sure why the boys in this house cannot actually dump the cloths in the container instead of right in front of it? Anyway, I am sad. I cannot stay awake more than a few hours at a time. And, now I am boring. I am not a fun mom anymore. My family tells me they love me. I know they do and don’t see things the way I do but I don’t want my life to be like this. Can anyone make it go away? Sorry everyone, I just need to vent. Lupus will not win! It may today, but not forever.
I asked my children to tell me how they feel about Lupus and how they feel about me being sick. These are some of the things they said. The writer in me had to correct some grammar but I love we got to the surface of their feelings. I hope to get even deeper because they are the future and the future of medicine. I hope to unleash a passion in them. Well, maybe I am getting to deep at this point.. Right now what I really love is that they love me. They hear what is going on and they care about the changes going on in this family.
My mom sleeps in late, is always sick, and has strep . My mom is sick all the time, but I can sill have fun with her. At the end of all of that, she is the best mother in the world, no exceptions! by caleb……… It is hard when my mommy is sick. I still have fun. We get to watch movies and do laundry, She watches us play on our scooters. I am angry sometimes. I am angry with the doctors because they won’t make a medicine to help lupus. But it still won’t break us from our love. I am happy when she feels good. I love mommy with all my heart and soul. We pray every night like our mommy and me time….conner