But you don't look sick...

In my first post I mostly rambled and ended it by telling a couple of this symptoms...

 I talked about fatigue and pain. I didn't even touch on the hair loss, weight gain/loss, the side effects of our medication, the memory loss, the headaches... it really just keeps going.
"But you don't look sick," That seems to be the number one thing us lupies hear. Oh, we look perfectly fine on the outside, there is no way our body is fighting it's self on the inside, that's just silly.
Well it is. Lupus is an autoimmune disease. They're different types of Lupus but it all boils down to one thing... our immune system is a little confused. No, it's not like aids, I hear that alot too. With aids the immune system is UNDER productive. With Lupus it is OVER productive.
You know what antibodies are, right? They fight away all the bad stuff that enters our bodies. Well people with Lupus have formed auto-antibodies. They go around attacking...us. Our organs, everything can be affected.
So, while I may look like a regular, pale, slightly chubby 20 year old female on the outside, trust me. I am sick.
I've heard people say, "Well, at least you don't have cancer." They're right. Thank God. But just because I don't have cancer doesn't mean I'm okay. It seems people view cancer as the worst thing ever and anyone that doesn't have it has no right to complain. I'm not denying that cancer is terrible, in no way am I saying that. I feel for the people who go through it, whether themselves or a loved one. What I mean is you can't really pit those two awful diseases against each other. That's like saying you have a broken foot, but at least you don't have a broken hand.
My point is, I'm sick. I don't like to think of myself as that way. Maybe it's denial. Some days I might feel okay for a little while and I don't even think about it. Most days it's all I can think about.
But I mostly like to think of myself as a person... a person that has to remember to limit themselves. A person that has to remember to put on sunscreen. A person that has to walk around with an umberella and sleeves while everyone else is in tanks and shorts, basking in the son. A person who loves rainy days because of the shade and cooler air, but hates them because of the joint pain it causes. (Yes I believe the weather messes with my arthritis, if you don't believe me then you don't have arthritis.)
I don't know where I was going with this. I kind of went everywhere with this one. I need to learn something about structure. (:

I'll try this blogging thing...

I don't really know what I'm doing...

No, I'm not "lost" or in need of guidance. I meant I don't know what I'm doing here. Writing this. Who'd read it? I really don't know. I guess we'll wait and see. All I know is I want to hear other people's experiences. I want to be able to relate to someone. Most of all I just want to see how it feels to get it out.

I know the blog is titled "Life with Lupus", while I do intend for it to be mostly lupus related it's really about me and how I live with it. So forgive me if one day I'm talking about a movie I just saw and thought it was amazing... It's MY life, Lupus is just along for the ride...

Lupus  popped up and said, "Here I am!" when I was in my junior year of high school. That'd make me about 16...

I had ABSOLUTELY no idea what Lupus was, except for the fact that in Lit. class we had recently talked about Flannery O'Connor and I remembered my teacher mentioning she died from Lupus.

Well... that being the only knowledge of the disease I had, the fact that it killed someone, you can imagine the state my mind was in. In all honesty, though, I do believe I took it better than my mom. She didn't know anything about it either, but the fact that I had this disease... this illness with no cure, it scared her. Scared me as well, of course. But even today I still think I take it better than her... It must be a "mom" thing. I don't know anything about that... yet...

Let's keep in mind that I am a blogger virgin, so I don't really know what I'm supposed to talk about here... or how long it's supposed to be... Be patient with me... I promise I will improve. But, hey, it's MY blog... so I guess I can do what I want (;

Speaking of doing what I want... being 16 and diagnosed was hard. I'm sure being 89 and diagnosed is just as hard, but you get what I mean. I was a teenager! It was SUMMER! Fun in the sun!...never again.

Now don't get me wrong, I wasn't really tan before. I didn't really enjoy the hot Alabama summers. But once it's gone you realize what you had and what you can't get back. If you have lupus or know someone who has it then you know what I mean. The sun is our enemy... and in a battle it always wins. Now I am paler than pale and I have to say... I really don't hate it. I've embraced it. Yes, I know I can sunless tan. I can buy bronzer, yada yada, but like I said, I like it. In fact, it compliments my usual attire... black clothes. Despite what my mother or grandmother thinks, I think the black on pale skin is cute. It's what I think that matters, anyway.

Fatigue. I'm not talking about, "Oh, I went to be so late last night and got up so early, I could use a nap and then feel better" fatigue. I'm talking day and night. 24 hours. Heavy eyelids. Cloudy brain. Weakness. I'm talking about the "I haven't slept in weeks" fatigue. All day, everyday. No, napping doesn't help. Yes, I take all the vitamins I need. Yes, I've tried 5 hr. energy... nothing.

Pain. Now with me there are different type of pains I deal with on a day to day basis, and I generalize it as, "I'm hurting today." 

1)Joint Pain. Good Ole Lupus wouldn't have been complete without pairing Rheumatoid Arthritis on top of it, of course. Every single joint. It hurts to stand, it hurts to walk. Take notes in class? HA! Like my wrists or fingers would allow it. I know I say often that I have Lupus, it doesn't have me. But trust me, some days it comes out on top. 

2) Muscle soreness. Ever had the flu? Did you ache all over? Now I've never had the flu but I hear a lot of "Lupies" explain the muscle soreness as "flu-like" Now, how did you feel while you had the flu? Awful? Like you were dying from the pain? I hear it's awful... I guess I would know... Now imagine having the flu forever and you can kind of get a sense of how I feel from the time I wake up to...well the time I wake up again.

These are the two basics. 

Well, I've rambled. I feel like it's getting long. Maybe next time I sit down I'll have a plan. I'll have an exact topic of what to write about... Maybe.