Monday, January 21, 2013

Living with the Wolf...

This morning I woke up and checked my email, just like I always do.  I got some test results, and so far it looks like those results mean I have Lupus.  It's still have a lot of doctor's appointments ahead and I am not sure what they will say about treatments and overlapping disease like Sjogrens, but right now I am trying to prepare myself for this....for Lupus. It's not an easy thing to prepare for.

I have a great group of women that I know, and one of those women sent me a link to her friend's blog. Her friend Jess is a blogger, chef and also has lupus.  I am just starting to read her blog posts, but I wanted to share one that really hit me hard...

Here is an excerpt from her post:

But here’s the thing: there’s no ending yet. She’s still here, and she probably always will be here on some level, which means I should treat her as part of my life instead of as a story, an episode, a 3-year-long body-wide bout of PMS. To a certain extent, writing about a so-called lupus experience might suggest that it shouldn’t be part of my life, that it’s somehow all just an unfair misunderstanding.
But it’s not unfair, and for now, I feel that writing about lupus would in some ways be a failure to incorporate it into my life in the way I think I should. My wolf is not the temporary visitor I’d always hoped her to be, but she’s not really all that bad. Lupus is not usually fatal, or even really all that problematic; it’s nothing compared to what some of my friends and family have gone through. It’s a little like having an ill-behaved pet (and I should know); she just needs the right care.
It’s been almost two months since that day in March, and these days I really do feel more energetic, which means now I begin to find out how hard it is to listen to The Wolf when she’s not actively tearing me to pieces. Now, I learn. I learn how to live harmoniously with her, how to walk and sleep and eat and breathe and cook with a wolf.
Now I start healing.
Jess is right. Whatever this is, this Lupus, or this auto-immune disease... it is not going away. It is not temporary.  It is also not usually fatal, and I can likely live a lot of my life without problems.  It is exactly like a little wolf, living inside of you.  Something you have to keep happy and tame and hope it stays calm.  
I had a dream last night, that I unzipped my body and stepped outside of it.  Some days lately I really want to do that, to step outside of my body for a few minutes to feel relief.  I do a good job of hiding the pain and discomfort, but it's hard.
I need to learn about my wolf. Find some peace with her.  I hope my little wolf doesn't kill me. I don't think she will, but it's scary.  I am going to work on healing too, like Jess.  I am sure it will be a life-long process. 

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