Living Honestly with Lupus

Lupus invaded my life almost two years ago and has completely changed who I am and how I live. I use guided imagery, art for healing, meditation and music, but it's a painful, lonely, isolated journey. I have much to share about my experience and would like to hear how others make life work, good and bad, with Lupus SLE.

Sunday, September 11, 2005

Starting a New Day

Another rough night, but made the decision to get up and take care of myself first. Taking care of myself means something different depending on the day, my mood, the weather, my body. This morning it meant making homemade bran muffins and listening to my praise music. While they cooked I sat on my patio with my little fountain and my roses all around and read a few pages from Praise Habit by David Crowder. Crowder talks about how we were ..."meant for every moment to be fully alive with this dynamic relating and vibrant presence of HOPE in finding our Maker near us." He goes on to say that ..."There's a cycle that takes place where we find/experience a spiritual habit that brings connection and meaning, but eventually even that thing will get stale and something else will need to find its way in. We need to continually redefine what our spiritual disciplines look like." It was so good to read that and to be encouraged that my spiritual discipline can and actually should be alive and changing. Today it was making muffins, listening to my favorite hymns and reading/meditating/praying outside.

After breakfast, I did a few yoga poses - to help ease the pain. For now, it's helped.

I need to remember on my bad days to look for the good time or day that surely is to follow. Peace to you.

Saturday, September 10, 2005


Well, it's been a very rough few days - so much joint pain that very little will relieve it. Sometimes, when the pain goes on for weeks as it has this time, I give up on using my basic tools; listening to guided imagery (see for incredible guided imagery of all type of diseases and difficulties) just doesn't cut it. Distraction, like TV is old. Books, the pain breaks through. Stretching - that gives me relief for a short time. I also have to DO something, so I cleaned out a closet. I move very slowly and accomplish 20% of what I could do in the same amount of time when feeling well, but it helped to distract my mind from the pain and it felt good to accomplish something. And, when all was said and done, the pain and fatigue remain. It's a heck of a disease - so difficult to maintain a sense of life before or after a lupus flare.

I must say that I am very blessed to have a wonderful, patient, supportive husband. He hangs out with me on the weekends so I'm not alone - or leaves me alone if that's what I need. He reminds me that this flare won't last forever and that I've had flares come and go even if this is the most painful one thus far. I guess you could say that he holds out hope for a better day when I am drounding in pain, fear and hopelessness.

It's after dinner and I did make it through the day. There were a few nice pockets. The pain did not destroy me. I hope and pray for relief, knowing it may still take a few more days for the increased prednisone to calm things down.

Hills and valleys - just don't stay in the valley too long.

BTW, this whole idea of blogging is foreign to me. My college son made a link to creating a blog when he was visiting a few weeks ago. He thought it might help me in this battle. Thanks, Michael. You're the best!