Tuesday, October 19, 2010

Slipping Again

I am a really a very patient patient. I took a week off of worrying due to Thanksgiving, where I had some dearest friends travel far and wide to spend here. It was great, and of course they were wonderful in understanding what I can and can't do. It was so special and very small compared to other years, but I just couldn't do anything on a large scale and organize a whole long weekend of events and things.  There were a few things that I couldn't do, but that was okay. Just having them here and close was amazing. 

They took me to the neighbourhood mall, where I haven't been in a year. It was very hard, but I did feel safe, although I don't want to do it anytime soon. I was in the transfer chair, and feeling shy and scared; sore and vunerable. I did see some people that were familiar, but didn't know them enough to chat. It was those kind of looks, the confused, the wonder, the pity. I damn hate this pity. I'm STILL me. 

The hardest thing about having visitors is the goodbyes, and I'm still having a hard time with it, even though I will be back to California in the new year on my winter escape. 

In preparations for the trip, I've been calling my doctors to make appointments to refill my prescriptions (that don't do anything but I can't just stop them) and to find any latest results.

The latest and most important ones that I have been waiting for is the radiation. The doctors don't have them, as of today still. This is how many weeks now? 

I'm trying to be strong, and nice, but I'm scared of what they will say, or have me go through again to get it done if they got lost. I'm scared of falling through the cracks - again. 

Falling through the cracks means that I'm not good enough for care, I'm a lost case and either they don't know what to do with me, it's also they don't care to. 

I'm very confused, and the pain is also in new places, new intensities, and it's frightening and defeating. I need help and I don't know what to do.

Is my only option hospice? No thanks, I'm not ready for that. That is giving up. However, I need care, I am stronger, but I am not able to jump back into normal life. 

My heart is breaking all over the place. 

Thank you to friends, family, readers and listeners. October is still Lupus Awareness Month. I implore you to help this awareness not fall through the cracks and be overshadowed. We need awareness out there. Someone you love has Lupus, and needs help.


  1. omg - and yet your bell like voice gives one the impression only of sunshine and beauty. Rhi - what can I do to help? I'm maybe F.A. (as per my adoptive monniker) but we onliners can move mountains when it comes the love of one our own.

    xx DFA.

  2. Simon resisted hospice and resisted hospice and when he finally went it was lovely, like a holiday for him and for me. Hospice isn't giving up, it's taking care of yourself.

    My experience tells me that fighting against the disease is exhausting, working around it and finding little pieces of sunlight in amongst it is gentler.

  3. I will pray for you. I mean that.