Tuesday, August 28, 2012

The Pantry Door

I forget things, probably because I always have lots of projects and ideas buzzing around inside my head all the time. I have tried lists. I have tried breaking projects down to specific tasks and putting each task on a note card. I have tried sticky notes. I have tried notebooks. All of these things have helped, but I still end up with that constant background noise of unfinished projects draining my energy.

Recently I read a book about mind mapping. Honestly, the book was horribly written. I decided to try the concept anyway. I sat down with paper and colored Sharpies and quickly made a bunch of mind maps for different projects. Of course, I ended up with a pile of mind maps! Last week, I made a mind map for the week. There were lots of things on the map. As I looked at it, I thought, "You are nuts. You are never going to get through all this stuff this week! You are setting yourself up for failure."

I posted the mind map at eye level on the pantry door, a place that I pass at least a gazillion times a day. Much to my surprise, by the end of the week everything was done. Instead of being immobilized because I could not figure out which thing to tackle next, I just looked at the map and picked one thing. My week was peaceful and productive. I could get into this!

This is a picture of my mind map for this week.

Saturday, August 18, 2012

Lupus Isolates

Lupus isolates people. Chronic illness isolates people. After the diagnosis, you are forever changed. You realize very quickly that the people who live in the land of the healthy have no idea what it is like to live in the land of the chronically ill. We have learned a new language and culture that they cannot understand unless they come to this land.

I gave a Lupus 101 presentation today. I watched the faces of the newly diagnosed as they learned about what lupus can do to a person. I watched the faces of the lupus veterans, nodding their heads. The presentation was heavy on the science. The questions afterwards were on social and emotional. I let the veterans answer.

One thing that every newly diagnosed person mentioned was that they had felt alone and isolated. They have no one in their lives who understands what it is like to have lupus. For the first time, they were in a room full of people who do understand. That's what support groups are about. We do not have to go it alone!

Thursday, August 16, 2012

Chloroquine Retinopathy

Last month I had my field of vision screening for chloroquine retinopathy. I take a drug called hydroxychloroquine (Plaquenil) an anti-malarial that helps control lupus. It takes about 6 months to take full effect. I have been on it for 9.5 years.

It's a great maintenance drug, but it can mess with your eyes. My field of vision was not good. The opthamologist sent me to the retina dude. After another hour and a half of testing, he concluded that the field of vision issues were not caused by the drug, but that I require serious monitoring every six months.

The drug can build up on the retina affecting the rods and cones. Apparently, they change color and sometimes that shows as a bulls eye lesion as in this picture. I saw the pictures and this is not happening in my eyes. Yay!

People who take plaquenil, please follow your schedule of eye exams. People who have been on plaquenil for over 5 years and those over age 60 are at particular risk. Just do it!