Thursday, October 30, 2008

Update

I am tired. Incredibly tired. I am tired of being strong. Tired of hiding my pains and my exhaustion from those around me. No one has asked me to hide them, but I do. I don’t want others to feel sorry for me, or to take “special care” of me. I just want to be treated normally. But I am tired, and I feel that I don’t have the strength to hide my pain anymore. It seems so weird to say, but right now things are bad. I have been flaring for two weeks. Now I feel a cold coming on and life is not slowing down for a couple of days. I refuse to miss Halloween with my son, so that will take most of my energy for the weekend. I’m glad I don’t have many plans on Saturday, but the idea of spending the day in bed is overwhelming sad. I want to be involved in my family’s life. Overall, I’m tired of being strong. Is it okay to let it go? I don’t know, I don’t want pitty, but I want people’s care- does that make sense?

The other big issue is I am having other health issues and I go into a specialist on Tuesday. I am very scared that he is going to take one look at me and say “It’s Lupus”. I may lose it. So stay tuned to see how that goes.

A close co-worker came to me yesterday and told me her daughter was just diagnosis with Lupus. I actually started to cry- which probably scared her a little. But I don’t want another person to have to deal with this, I want to take action, I want to yell from the roof tops that we need to make awareness for this disease as high as we can and stop it. But how do I do that- I am just one person.

Lots of questions, no answers. I emailed the Pacific NW Lupus Foundation to get involved but haven’t heard from them, do I really want to work with a nonprofit that doesn’t communicate with people who are asking to help? They even have Board openings and I would love to know what that would entail. It’s time to make this disease known!

Thanks for listening to my random thoughts.

1 comment:

Ruth said...

As I read your post, I can't believe that you wrote it and that I didn't. I feel every word that you wrote. I experience everything that you said. I don't have answers, I just wanted you to know that you are not alone.