My journey with Lupus

OK, now I'm just getting fed up.  This whole situation is starting to bother me and I am losing hope for a positive 2012.  I'm still coughing.  I'm still home.  And while I am loving this alone time in my apartment, I find myself getting really pissed off at Lupus.  It's like, what? I can't even get a cough anymore without it getting all blown out of proportion, into like pneumonia?  I just keep thinking that this is going to be a tough year for me physically and there is nothing I can do to avoid it nor prevent it, I just need to suck it up, which sometimes I just don't feel I'm up to that challenge.

A friend I haven't seen in a long time calls me and wants to get together.  She asks the dreaded question, "How are you?" and I just lose it on the phone. I'm crying, I'm like this sucks, etc. And I hate being like that.  It's not who I want to be, nor who she remembers me being when we worked together so many years ago.

She decides to come and hang out tomorrow and we'll share a breakfast.  I offer her use of my car.  One thing that this time alone has really allowed me to do is to find ways that I can still serve people from my home, at my computer, in my PJs. 

This time at home has really allowed me to focus on my volunteer work for AVP, and my on-line support groups.  And I have to say that it has really been fulfilling.  I am amazed at what I have been able to accomplish from home, and how much it fills me.  I'm beginning to feel a sense of community, even if virtual, and that means everything to me. 

For example, offering to send voluminizing shampoo to a Lupie who can't buy it where she lives, designing a flyer for an AVP workshop, offering support on chat to fellow support group members, catching up with friends all over the world on Facebook. All these things make me feel useful, even in my PJs, with my down mood and pissed off at Lupus attitude.