Discoid Lupus.

With every new spot that pops up there's worry. Is it discoid lupus? Is it a pimple? Is it a rash? These are questions that shouldn't have to be asked. We shouldn't have to worry.

One of the things I'm supposed to do is constantly wear sunscreen. But the sunscreen on my face is making it break out. Which makes me feel like my face is just ugly. Scars and pimples that everyone can see.

And long sleeves. I live in San Diego. It's now summer. And I have to wear long sleeves? Oh and I can't forget about the hat. I have to wear a hat. Because if I get discoid lupus spots on my scalp, they will scar and hair can't grow through scars. So I can lose my hair and have scars on my scalp for the rest of my life if I don't wear a hat. Great.

The fear of getting SLE lupus? That's a constant. I mentally keep track of how achey I am and when I feel that way and how tired I am. My appetite is severely lacking and it's hard to be pleasant when I'm constantly tired and achey and have no appetite except for at weird hours.

How much of a pain in the ass could I possibly be? My parents have to check my back to make sure new spots haven't come up because I can't check myself. My boyfriend and his kids can't go outside and play with me because I have to wait for the sun to go down. I can't go with them to the zoo or to the park or to something fun outside because I'm supposed to have limited sun exposure. I hate when people disappoint me. But I really hate disappointing other people.

My doctor told me that as long as I'm careful, I can lead a pretty normal life. But what's normal about constantly fearing the sun and it's UV rays because it can lead to scars on my face, neck, and scalp? What's normal about being so afraid that I feel like I have no choice but to stay inside? What's normal about wearing sunscreen everyday? What's normal about taking vitamin D supplements because I'm not getting vitamin D from the sun? There's nothing normal with discoid lupus.

Things I Like/Dislike/Worry About for Today

Things I Like

1. Starting my day off with some sort of communication from my ASHM. Doesn't matter what it is, it still makes me smile to know that he took the time to send me something.
2. When I walked downstairs this morning, I saw on the kitchen counter that my mom had bought me a new lunch bag to keep my lunch in. I thought it was really nice of her.
3. Weekends that (even though they are stressful) work out okay.
4. Making plans with my ASHM to see him more than once this week. I feel like I haven't spent much time with him at all lately. So it'd be really nice to see him a little bit more.
5. Feeling like I'm making little accomplishments with the big things I need to do.
6. The new iPhone 4G! It looks like something I'd like to get.

Things I Dislike

1. When it's slow at work. It makes the day drag on.
2. Not being inspired to knit. I have projects I'd like to finish and I just don't have the energy to do so.
3. Not having enough energy! This weekend was tiresome and a little emotional and that always wears me out. And I haven't been able to get enough sleep no matter what I do.
4. Feeling like I am so alone with this disease. Discoid lupus is just no fun.
5. Having to ask for favors. I hate inconveniencing people even if I REALLY need the favor so I can do something I NEED to do.
6. Being bummed about the fact that my ASHM and I can't go to Ink 'N Iron this year like we had planned. There's just no one to watch the kids and we'd get back too late so we're having to cancel our plans. (Although thank god we didn't buy the tickets yet.)
   

Things I'm Scared of/Worry About

1. Making my bosses irritated with me.
2. Having my ASHM irritated at me.
3. Being seriously ill.
4. Gaining weight.
5. Disappointing people/having people disappoint me.