Lupus Advocacy Day 2011

Originally posted at DailyKos, but everything I post there gets lost in overload.

Lupus kills. Today was Lupus Advocacy Day 2011. It’s too late for Barbara, but maybe we can save someone else. We need more research.

Almost nine months ago, I lost Barbara to lupus. This disease is the original source of the “Spoon Theory” by Christine Miserandino. If you don’t know the Spoon Theory, please take a moment to read it. I’ll wait.

Welcome back. I’m a spoonie, as we who suffer from invisible disease refer to ourselves. No, I don’t have lupus, but invisible disease comes in many forms. I have fibromyalgia and epilepsy. On topic for today, my Barbara had lupus. It took her from me this past June. Nothing will ever change that fact. It’s too late for us.

But maybe if we could agree to fund a bit more research, another loved one could be spared from the fate I and my love faced. You probably don’t know who around you has lupus. We only knew for a few months what it was that was killing Barbara. Some people live for years with Lupus, never knowing they have it until it is too late.

Others live for years knowing it will ultimately kill them. In the interim, they take huge numbers of pills, maybe the occasional chemotherapy treatment, all in the hopes of prolonging, and bettering, the time they do have. No one knows what causes lupus. We know that there are some treatments that can slow its progress.

We know that it is an auto-immune disorder. The sufferer’s own immune system attacks the body’s organs, as though they were foreign matter. In Barbara’s case, it attacked the connective tissue of the organs, making them unable to perform their duties. Her lungs were the first to be compromised. At the time, the doctors thought the pneumonia she had just recovered from caused the lung damage. Gods, how she hated that she needed to carry oxygen everywhere.

Next we noticed a hardening of the skin on her fingers and toes. That’s called scleroderma. As the NIH article notes, when one has both scleroderma and lupus, doctors refer to the condition as “Mixed Connective Tissue Disorder”. Seeing that start was the first clue we had that something truly serious was happening.

Just a few months after that, her colon ruptured. She fought for almost two years trying to recover from that event. Ultimately, she lost that battle. Barbara was 48 when lupus took her.

Tags: Advocacy, Lupus