To know or not to know?

I recently had a nice visit from some old friends. While talking with them over dinner, one of my friends talked about how she'd been having allergic reactions that put her in the hospital for several weeks where she almost died. She'd been forced to depend on huge doses of prednisone to control whatever it is that is going on in her body and all of us with Lupus can relate to that. She's had to go from doctor to doctor and they still didn't know what was wrong with her. Her doctor's are now sending her to NIH in Bethesda for a full week long work up. I had such a eerie feeling when she was telling me her story reminding me of how miserable those days are when you don't know what is going on in your own body.

I always thought that the day I was told I had lupus was one of my worst, but it's far too easy to forget that it actually was worse waking up every morning and not knowing why I hurt so badly and kept getting sick. Every time something new happens to me, I can never tell if it was better to know what is going on and prepare for it or if I was better off being ignorant. I suppose there is a grain of truth in that saying, "Ignorance is Bliss".

I know that part of Lupus is that it always goes from one organ to the next, but aren't you tired of waiting to wake up in the morning and see what infection you have or what organ this disease has made it's way to? I suppose this frustration might be because it has been so long since I've has a pain free day where I didn't feel crummy, but I'm always hesitant when I go to the doctor's office. Am I going to feel better knowing what's going on or is treating whatever comes next just going to make life even harder?

I don't mean to take anything away from all of you out there who are still struggling to find your diagnosis because I do understand that struggle and frustration. I'm just disappointed that, for me, the day I got diagnosed didn't necessarily make things better. Every girl has her trauma I suppose and maybe mine is because the doctor who diagnosed me told me in a very cold backhanded manner and then sent me home without explaining what it means to have Lupus.

You learn very quickly what having Lupus means and that is a sad fact. I know that there are those of you out there that live with this disease every day without it impacting your daily life and I am, truly from the depths of my heart, so happy for you, because that means that for the rest of us, there is still hope. I think that all lupus patients have to spend their life fighting, whether it's fighting the medical system, or fighting to get your loved ones to understand, but most of all I think we should all fight for hope. Hope is what makes every day worth waking up for and we should all have that.

Whether we know or don't know what is coming next for us, we should always search for that reason we get up every morning. Whether it's your husband, your child, or the 10:30 staff meeting, we all need something to look forward to and get up for every day. I hope you all find that today!

"I had the blues because I had no shoes until upon the street, I met a man who had no feet."
~Ancient Persian Saying