Life, if that’s what you call it

Lupus is a thief. It comes in quietly and takes everything it can with out any remorse. The things it takes are more or less the same for everyone with various levels of severity. Each victim copes differently but we all have the same thing in common. We live each day with a thief looking over our shoulder and pray that we can stop it before it takes everything.

This thief started taking taking things from me before I knew for sure it was part of my life. I was 17 when Lupus started to take things from me. First, it was my ability to dance. I loved dancing and it was when I was 17 it became increasingly more difficult and painful to do so. I didn’t know why it was happening I just knew that I couldn’t do it anymore. By the time I graduated from high school it was apparent that dance was not going to be a part of my future. As time went on it was small things that were taken things that you don’t really notice. Like going out on a sunny day. I couldn’t (can’t) even go to the store or the mailbox with out becoming incredibly tired or possibly getting a rash. Or being able to type with out you’re fingers getting stiff. Even walking through the mall was an exhausting task.

It stole my confidence when my doctors wouldn’t believe that I was sick. When they told me it was all in my head.

It stole my joy in having a new baby because I could barely hold him without pain.

It replaced my excitement with fear in my next pregnancy because I was always afraid I was going to lose her.

It has taken my ability to be the mother I want to be, because the pain keeps me from being able to play with them or at times even hold them. Outings are exhausting. Playtime, bed time, even making a meal for them can take every ounce of energy I have. Instead of being in the center of the fun they have with Daddy and friends I have to watch from the side lines as I see others play, run, swim, jump with them like I want to. Those memories that I so want to be a part of have been taken from me without another thought.

And now, it has started to steal my words and my thoughts. Writing, as I am right now, takes hours even days to complete because trying to put my thoughts and ideas together has become increasingly difficult to do. I remember a day last spring when we took the kids to the pool on base and I had to stay under the sun structure and watch as my kids, my husband and one of my best friends in the world playing  in the pool with them like I wanted to. That day I thought to myself that this was the worst thing that Lupus take from me. I was wrong. A few weeks ago I sat down to write, as do when I need an emotional release, I got a few paragraphs in and I forgot what I was writing about. I couldn’t figure out what word was next in a sentence. How is this possible? How can I not be able to form a cognitive sentence? I want to be able to spread Lupus Awareness, but how can I do that when I can find the words anymore? I never thought that this thief would be able to actually take my ability to write, and speak intelligently but it has.

I don’t know what else this thief is looking to take from me. I only know that it’s still there. I can’t make it go away. With the right treatment I may be able to slow it down. But for better or worse, I know that I am going to be living the rest of my life with a thief, called Lupus,  waiting in the shadows.

Well, I didn’t work out on Friday, Saturday or Sunday. I know I’m a bad girl. But in my own defence I really wasn’t feeling all that well so. Here’s what happened:

Friday morning I woke up and instead of doing my work out I decided to start putting together some stuff that we had gotten at Ikea on Thursday. Big reason I decided to do it then was the same one for me trying to get up early to work out, greater chance the kids will still be in bed and therefore I won’t be bothered by them. Well, after that I decided to put up the blinds in our living room and then clean up the mess I had made in the house doing all of these things. By the end of the day I was hurting. Once Saturday rolled around the last thing I wanted to do was work out, and that followed me the whole weekend.

Good news is that I did work out today. It hurts and I know I’m going to pay for it in the next few days but I’m glad I did it. And now I have officially ran out of things to say so I’ll leave it at that and get some sleep. Hoping that tomorrow will be a better day all around.