I am the face of Lupus: Part 3

Over the 9 years that followed, I had medication changes galore.  Ranging from spurts of steroids (which I insist come straight from the devil) to chemo drugs to anti-inflammatories.  I had what I thought were good doctors who turned out to be not so good, some just plain rude doctors, and some great doctors.  At my lowest I weighed 120lbs and at my highest 190lbs and every where inbetween.  I've grown my hair out to hide bald patches and I've cut all my hair off to transition in new fuzzy spots.  I have had times of intense pain and moments of pure joy when I was able to forget the pain.

I wish I could say that I'm healed, but I can't.  I still wake up every morning with soreness galore.  I often find myself becoming complacent in my life when I'm not busy doing something.  I'll look around to see the kid's toys all over the floor and wish that it didn't hurt so much to crawl or bend to pick them up or remember the baskets full of laundry upstairs that needs to be washed and wish that my knees and hips didn't ache so much going up and down the stairs.  I look at my dishes piled up and strewn across the stove and counter and imagine a life where I could wash them without searing pain stabbing across my back, but then I think, this is my life and what can I really do about it?

Typing this out brings tears to my eyes because there is so much that I want to be and do.

• I want to be a good wife: the kind that cleans up the house, vacuums, does the laundry, dishes, and has dinner ready. 

• I want to be a good mom: the kind who can give her kids piggy back rides and pick them up and sit with them on the ground to read a story.  

•  I want to be a good friend: the kind who is makes plans and keeps them and remembers birthdays and is always ready to help. 

Right now I think I'm doing the best I can.  I realize that there are more important things than housework and that my kids probably won't care if there are a few things I can't do with them as long as they always feel loved.  I make it a point to focus on relationships instead of tasks and try to see the sun shining behind the clouds.  I'll admit, sometimes it is incredibly difficult.

I'm sure there are some people who think I'm just lazy and some people who judge me for using a handicapped permit because I don't look sick, but in the end it doesn't really matter what people think.  Nobody will ever understand what it is like to have this disease, unless they have this disease.  No amount of me telling them or explaining it or having them imagine what it must be like will ever make them realize what it is truly like.  I felt ashamed to talk about having Lupus for a long time because I didn't want to feel like a victim, but after being hospitalized after having Nola, the cat was out of the bag so to speak. Now I speak about Lupus pretty freely in hopes that we can grow our empathy for all the sufferers of invisible diseases.