Lighting the Way for Others

I love to wear big sweatshirts on cold days. Here in Florida, we have had a few almost chilly days that were cool enough for a sweatshirt. Last week, I was coming in from the grocery store wearing my Lupus Florida Walk sweatshirt. A neighbor stopped, and speechlessly pointed at the logo. After a brief silence she asked, "What do you have to do with that?" I said, "First, I have it. Second, I work there." Silence again. "I was just diagnosed with lupus myself," she replied. I asked if she had any books on lupus. She did not but was interested. We agreed to meet next week.

Later that night I pulled a pile of lupus books off my shelf, put them in a bag, and hung the bag on her doorknob. Tonight, I am reflecting on just how isolated, lost, dazed and confused I was after my own diagnosis nearly 9 years ago.

A well intentioned choir member gave me the book The First Year--Lupus: An Essential Guide for the Newly Diagnosed. As soon as I got home, I put the book face down on the table on my balcony. Sometimes, I tried to muster the courage to even read the back cover. I finally got the courage to read and then the courage to read more and more.

Those books that lit the way out of the despair of my diagnosis, now, they will light the way for another person. When I was diagnosed, I couldn't find a physical person to light the way for me. But I can be there to light the way for her and others.

If you have just begun your journey with chronic illness, there are people and books that can light the way for you, too. You aren't as alone as you might think!

Sometimes There Are No Answers

"The doctor's not answering my questions," is one of the most common complaints that I hear from lupus patients and their families. In fact, I had the same complaint when I was first diagnosed. After 14 days in the hospital, I finally had a diagnosis for what had been bothering me for 38 years-systemic lupus erythematosus. A month later, I visited my rheumatologist for a follow up appointment. I had three pressing questions:

1. Is this progressive?
2. Will I become disabled and lose my independence?
3. Will it kill me?

He could not honestly answer those questions. Why? Not because he was trying to keep information from me, but because there is no clear answer. I was diagnosed in 2003. Since then I have done a lot of reading and learning.

Is lupus progressive? It can be. But it can also go into remission. A medication that prevents or slows organ damage in one patient may not work on another. Lifestyle and attitude have a lot to do with how lupus behaves as well.

Will I become disabled and lost my independence? No one knows. Most cases are mild to moderate, but it can be disabling.

Will it kill me? Maybe...maybe not. Lupus patients do have higher risks for heart attacks and strokes. Organ damage can lead to death. But, with good medical management and a proactive approach most lupus patients live a normal life span.

So, my doctor was not keeping anything from me. Sometimes there are no answers!