Monday, October 6, 2008


So, I've been kind of riding a crazy wave of lows and highs recently. Totally unrelated to Lupus, but kind of related to it, I've just been having a hell of a time adjusting to my new life with all of the accompanying changes I discussed in my last post. It's really, really hard. I have moments where I feel like I can see all of this possibility and I have hope - hope that I'm going to go into remission, hope that I am going to really find myself and figure out a better way to balance my life and emotions, hope that I will meet someone else that I love and feel as connected to as I did and still do with my ex. But then I catch a simple cold and it turns into pneumonia within a week's time. (I've been dealing with my sixth or seventh episode of pneumonia for the past couple of weeks. When I went to see my GP, she wanted to hospitalize me immediately, and basically said things which made me face the reality that I do have a very serious illness - something that I think I try to ignore a lot of the time - it was upsetting and depressing.)

Or I come home from work and I am alone. Or I go on dates with someone and then think - how am I ever going to discuss all of the things that I carry with me - kidney disease, severe sun sensitivity, discoid scalp lesions, the crazy body changes that accompany both nephritis and the countless and seemingly endless medications I'm on, the flares when I can't get out of bed and every movement of my joints causes searing pain that makes me cry out. I'm afraid this burden is too much for anyone but me to bear - and really it's too much for me - I just don't have any choice in the matter.

Sometimes I feel like I'm too tired to keep on fighting, like i've passed the saturation point and I just don't have any more fight left in me. I don't want to work, I want to be taking care of myself full time. But without work I have no health insurance - that's not the only reason why I work and I actually really love my job, but it sure would be nice to take a couple of months off and just do yoga all day and have the time to cook incredibly healthy meals, and take walks in the woods, and just regroup and recenter.

But then the highs come in and I feel blessed to be in this world at this time in history - I feel energized to do something meaningful and positive with my life. I feel that I as an American, but also as a world citizen, am uniquely privileged to be able to be experiencing what I can only call a precipice where we can either go further down, following systems that no longer work or we can move towards something new, something stronger, something more conscious. At least I guess I feel that within myself and I see that feeling reflected in the world around me. There's an energy in the air - an energy of change and I don't think it's coming just from all of the political slogans.

Anyway, I guess I wanted to share these thoughts with you all. I think all of us with Lupus know that it is a constant battle to try and find some balance and semblance of normalcy. The spoon theory explains this well. I know I will keep fighting and keep moving forward. But sometimes I'm just so tired. Sorry if this post is depressing.