Having lupus is not fun.
It is not an easy ride for me. I have had it for too damn long. 25 years and counting.
I am tired of it.
My body is tired of it.
I think of little red ants eating away. They eat my body. I try to think of a knight moving in with a sword made of blue light, killing the damn ants right and left.
Lately, it ain't working any more.
Folks often ask me how I do it. No pills. No big pharma.
I always laugh at the questions. If only everyone understood that many of my other problems are caused by the very prescriptions given to me by the doctors who were 'helping me'. I used to take 17 prescriptions. I stopped them all one day, and wish for no more of them.
I lost two years of my life being doped up to the gills.
The steriods caused me to develope osteoporosis. I got the body and joints of a ninety year old woman. If and when I fall, I am waiting for the broken hip. I cannot imagine or want to imagine being confined to a bed for any amount of time again.
The other pills caused three ulcers. The good doctors managed to laser two of them away. The last one was too large. I will carry that one to my grave. Any amount of pill taking risks me throwing up blood and more nausea. Never mind more pain, too.
Nor do I ever want to know again about being in a wheelchair. I spent time in one three years ago. I never could decide why sitting in a wheelchair meant my hearing was bad. At least, that is how it felt when everyone coming up spoke to louder than was necessary.
Now when I walk, I always walk a few extra steps. I remember well when I could not take any. I walk for the ones I have met who can no longer walk. I walk a few extra even when I am tired of walking. For I know all too well here, that the day will surely come when I will walk no more.
I try to be brave and not cry anymore. If I feel tears coming, I say to myself 'I will not cry now. Lupus will never make me cry anymore'.
Yet sometimes I do cry.
I cry for the little girl who foolishly wanted to live to be 100 years old.
I cry for me when I feel my back against the wall.
I smoke marajuana for the pain. It is not legal to do so in this state, at least, not yet. I often wonder what would happen if I get caught for doing so. I have no criminal record. Nor do I want one.
Marajuana also helps me eat. Being in pain, I never want to eat at all. I have constant nausea. Getting the munches can be a good thing. Not eating results in rapid weight loss. I remember well that downward spiral. I once lost down to under ninety pounds and looked what folks describe here as a 'crack whore'. It was no fun at all.
Lupus is sometimes called 'the invisible disease'. I often feel a low grade fever with a flare. I went last week to the grocery store to get something, anything to eat and settled for a frozen pizza and a six pack of beer. I walked up to the cashier and was leaning on my cart handle in pain. The fresh faced girl running the cash register smiled and said to me "You looks so healthy today. I bet you are never sick, are you?"
I did not know whether to laugh or cry. I was holding on to the handle of the buggy hoping not to throw up on the floor, or fall down from lack of sleep. I walked out in shock after paying. My only thoughts were if she only knew....
Chronic, long term pain just plain sucks. I am not the only one with it.
But please, no pity here.
I want no sympathy.
It is not easy to be me.