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.

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!

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!

Wrestling with Thoughts

Psalm 13
How long, O Lord? Will you forget me forever? How long will you hide your face from me? How long must I wrestle with my thoughts and every day have sorrow in my heart?

Whether or not we are aware of it, we spend a lot of time wrestling with our thoughts. If we have chronic illness that wrestling sounds something like this:

I hurt. I am tired. What if this is as good as it gets? What if I become disabled or more disabled than I am? What if I can’t take care of myself? Will I lose my mind? What if my family puts me in a nursing home? How will I survive? And on and on…

We are so busy with our thoughts, that we would do not notice God with us all the time. Observe your thoughts. Pay attention to what you are telling yourself day in and day out. Sit in silence and notice the things you think. Sit down with a piece of paper and write down every thought that comes to your mind without censoring anything. What did you discover?

Awareness is the beginning of change. Carry this awareness of your thoughts with you through the day. Choose more positive, helpful thoughts to replace the negative ones. Instead of “I can’t do anything anymore” you might say “I can love” or “I have the time to really listen to others.” Make up your own new thoughts. One of the wonderful things about being human is that we get to choose what we think!

As the negative self talk subsides, you will find that God has been there all along.

Healing through the Psalms 1

Psalm 1

Blessed is the man who does not walk in the counsel of the wicked

Or stand in the way of sinners or sit in the seat of mockers,

But his delight is in the law of the Lord,

And on his law he meditates day and night.

He is like a tree planted by streams of water,

Which yields its fruit in due season and whose leaf does not wither.

Whatever he does prospers.

Not so the wicked.

They are like chaff that the wind blows away.

Therefore the wicked will not stand in the judgment,

Nor sinners in the assembly of the righteous.

For the Lord watches over the righteous,

But the way of the wicked shall perish. (NIV)

When the psalmist refers to the wicked as chaff blown away in the wind, we judge ourselves as wicked. Illness has blown away our identity, hopes, and dreams and, in fact, our very selves. Surely we brought about our condition because we were not good enough, we made poor choices or we failed to do the good we should. Guilt and blame add insult to injury for the person who has chronic illness. We long to be like the tree planted by streams of water. We want to bear fruit, to be productive. Instead, we wither.


People who are healthy need to reassure themselves that they are the righteous ones and are therefore safe from our plight. They are more afraid than judging. Yet, we feel judged and we judge ourselves. We want to know why and find an easy answer in judgment.


God does not send illness to people. Illness happens. All creation is striving for perfection, but has not yet arrived. No one is perfect. No one is truly righteous. We all fall short every single day. Think about it. If God makes bad people sick, how then, are brutal and murderous dictators living healthy lives?

You are not bad. God is not punishing you. In the desert void created by your illness, God will indeed bring streams of living water. The only thing in the way is the dam that you build out of blame and guilt. Let go of the judgment. Let go of the blame. Let the river flow. You still have much fruit to bear.

World Lupus Day May 10

A post today read, "Celebrate World Lupus Day by raising awareness." Celebrate? Really?  Raise awareness? I can do that. I can celebrate my chemically induced remission. I can celebrate the great minds that developed medications that allow me to keep my kidneys. But I won't celebrate lupus.

My observance of World Lupus Day is renewed determination: determination to find the cause and cure by supporting research, determination to be a voice for lupus patients through advocacy, and determination to help people with lupus live their best life.

But the best celebration by far would be a world in which there was no need for a World Lupus Day.

Please join me in supporting the Lupus Florida Lupus Walk http://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1014606&lis=1&kntae1014606=661E91D667774137894D7264D3F29E8A&supId=353733180

Why?

Why me? Why not me? When we are sick, we ask why. When we are healthy we do not ask. We ask because we are trying to grasp the incomprehensible. We have to make sense of the suffering. Somebody or something is to blame. We have to know. If we knew, maybe we could do something about it. If we knew, this would all make sense. But we don’t know and it doesn’t make sense. I can use my energy to ask why or I can choose another reaction. I have that choice. I choose to manage my disease today.