It seems rather fitting that today is the first day that I am posting and also the first day in a looooong time that I have woken up pain free and with some energy. I guess the blog is already proving to be beneficial!
I decided to start this blog to document my neverending battle with a disease called Lupus. For those of you who don’t know what it is, I will keep it short:
Systemic lupus erythematosus (SLE) is an autoimmune disease, which means the body’s immune system mistakenly attacks healthy tissue. This leads to long-term (chronic) inflammation.
I guess you can sum it up by saying that it sucks, as any chronic disease sucks. Lupus is particularly annoying because you never really know when it will flare up and take you out. Let’s also be clear that there are varying degrees of the disease. I am actually thankful for the fact that I am a lucky one and don’t have the organ involvement that other people suffer with. That is when things get really scary and can lead to death. Usually when people ask me about the severity of the disease, I respond by saying, “Well, I won’t die from it, but I will live a long and miserable life”. Yeah, I guess that sounds very negative, but, sadly, it is probably true.
I have found with my recent bouts of dealing with this disease that reading other people’s experiences have been very helpful. It is good to read about the ups and downs of what people face emotionally with this disease. There are some stories that make me feel grateful for the fact that I am not as bad as them. Evil, I know, but things can always be worse! It is also nice to hear that the fear, sadness and depression is a perfectly natural thing to go through.
I also had hesitations about writing this blog. It feels almost whiney to ruminate in this disease. I spend so much time thinking about it that writing about it almost seems morbid. I don’t want to be the person who is the bummer bringing everyone down with my complaints all the time. I would like to be a more positive person. One of those people who embraces life and gets on with it. Those people who go and do a marathon despite having cancer. The ones that smile and are happy with life. Yeah. I’d like to be that person. But I think I am probably not. Don’t get me wrong. I also hope I am not a bitter person either. I think I sit squarely in a place called realistic. I am still struggling to find my place in this world with what I have been given. My life has had to adjust a lot over the past year and I am still coming to terms with what exactly that means. I am mourning the loss of my old life still while trying to make adjustments to keep this one going. It is very difficult and hopefully writing this blog will sort some of it… Or at least other people can sympathize with the struggles.
But today I am feeling good. For the first time is a really long time. Yay for that. It is like being a gift when you wake up pain free and not exhausted and beaten down before the day begins. You really learn to appreciate those days and pray that the next day will be just as good. So, I’m off for now to enjoy feeling good!