I was living in Ohio and it was wintertime. One day I took my son to day care center, and the day care worker started getting agitated, and they said, “Somebody call the emergency.” I would look at him and say, “What’s the matter?” They said, “Don’t you know?” I said, “No.” They said, “You’re all blue.” I went that same day to my family doctor, and he didn’t know what it was. He sent me to a specialist at the University of Cincinnati, who did more tests, and they came back with a diagnosis of cold agglutinin disease. Before that moment, I had never heard the term or knew what it was or knew anything about it. They told me, “You basically have 2 choices. You can either take steroids or move to a warm, dry place.” I went home and told my spouse at the time what he said, and she said, “Okay, I guess we have to move.”
When I moved to Arizona, I continued to work and I found from experience, though, that no matter where I went, there was times when the environment would be cold, and it would trigger my condition. My feet would get very sore and very numb, and I wore wool socks, but that wasn’t enough. I found myself having difficulties being able to walk. Eventually, I got to the point where I felt that I, realistically, couldn’t work. At that point, I went on disability. I was a very active person before I got CAD. I was just living a normal life. I had two kids. We lived in a home, lawns to mow, a job to go to, we went on vacations. Things that everyone pretty much does and you don’t think about it. It was frustrating when now, I had these new limits. Especially, you want to provide for your family and suddenly now, you’ve got these restrictions. Then, the other problem with CAD is, you didn’t always know when you would be triggered. If I started to wash my hands when the water was really cold or if I’m cooking, which I love to do, I have to careful there because when you’re cooking, you tend to wash your hands and put your hands in the refrigerator or the freezer to get things. If you do too much of that, then your fingers start to turn blue. It does change your life in just about every way. One of the doctors early on said that you have to be your own advocate, because the people around you know so little about it. The laboratories oftentimes don’t know how to treat my blood. They want to treat it like everybody else’s and you can’t. That’s a learning experience that I typically have to initiate and help them understand, and it doesn’t end. I’m not a person that talks about my emotions very much. I internalize them, and I just try to deal with it in a way that I’m not taking it out on other people. Even though this condition is rare, and even though it has limits, I have, for the most part, been able to live a pretty normal life. Instead of giving up things totally, you just learn to do things differently, in a different way. One of the things that I’m proud of is, I got involved with being an advocate for members of homeowners’ associations. That’s been very important because it’s kept me busy, and it’s given me some goals, and it’s given me an opportunity to help people. I enjoy walking with the dogs. I love architecture. I still draw. I used to do that for a living, but now I do it more for pleasure. It gives me a chance to use my imagination. Having this disease, actually, is not all bad because it’s taught me to appreciate life. It’s made me realize that there’s other people that have different problems than I have, and it’s helped me to be more empathetic towards them. I think that’s made me a better person.