I spent all day yesterday organizing piles of paperwork that had accumulated over the past couple months. I was too sick to deal with it until now. Most of it involved medical care, the majority being insurance papers and medical bills. It was so time-consuming that by the end of the day I was grumbling to myself (even more) about the state of health care in the US.

I hear stories from some of you in other countries with nationalized health care-- no bills, no insurance denials and appeals, no entire day spent just on filing the paperwork....

But close to the end I came across a VF newsletter from a few months ago. I read about a man with Wegs who said that even though he was in awful pain, his blood work always looked great and his doctors thought he must be nuts. He asked if anyone had experienced the same thing. Since that pretty much described me, I emailed him and encouraged him to find a Wegs specialist, that they would know what to do. I also gave him the link to our group.

Today I got an email from his wife. She said he died 3 weeks ago from complications of repeated "pneumonia" and diabetic ketoacidosis. He was too weak to take his insulin, and he was coughing up blood. She said he'd had a continual flare for 6 years. So clearly, he died from Wegs.

I was so saddened by this. He and I had such similar cases. I've never been in remission. I've been misdiagnosed the same way several times by non-Wegs doctors--treated for pneumonia for weeks at a time while I slowly went downhill. He died the week I received my last Rituxan infusion. Maybe if he'd had a Wegs specialist, he might still be alive.

It's a reminder of how vital it is to get the very best and most specialized care we can.