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The beautiful weather in the Northeast these past 6 months almost made me forget I have autoimmune hemolytic anemia, specifically, cold agglutinin disease (CAD). The fall comes with some stark reminders that the wonderful, normal feelings the summer offers are starting to give way to the ugly reality that I have CAD.

During the summer months, I can easily grab a warm bottle of water and drink it without my throat burning. This is a small example of how the milder weather helps me feel and act “normal.” I can pretty much live like everyone else and just enjoy life.

However, the fall makes everything just a touch colder than I can handle. This year, the temperature dropped so quickly. One week it was in the 80s and the next week, the high was in the 50s. This drastic range in temperature is what gets me, and I have been dreading it for months. I have had the heat on for a couple of weeks now—an absolute necessity.

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It seems that it should be simple enough to adjust to the weather changes this time of year, but it isn’t for me. Each day starts out cool, gradually getting hotter, and then, of course, it winds up very cold at night. I try to combat this by wearing layers of clothing I can remove as the day gets warmer. Initially, I don’t notice that it is affecting me until I start to get warm, so I remove a layer. Then I start to get hotter because by the time I realize this, the hemolysis has begun. At this point, my body starts to overcompensate by heating up and suddenly I’m sweating. But within 10 minutes, I need to put that clothing layer I just took off, back on. It is the most annoying back-and-forth you can imagine.

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This happens all fall and winter long. Sleeping is just as bad. The constant back and forth of covers on, covers off. It’s hard at the beginning of the season to find the exact temperature I need to avoid hemolysis.  

Then, there are all the other things that you have to adjust to. I have to warm up my bottle of water because the house isn’t warm enough yet. When I want one, I place it in a large mug filled with warm water to get it to the right temperature. When I am on the road for work, I keep the water in a bag on the floor so the heater can keep it warm. This must be done for everything I drink.

When it comes to food, I wear gloves to get things from the freezer. When I want something that is normally refrigerated—salad, for instance—I leave it out on the counter for a bit so it’s not so cold. Obviously, things like ice or ice cream are out of the question.

Bathing can also be an issue, which seems weird, but it is. I crank up the heat and run the water to create a warm, steamy environment. A couple of years ago, I found that I was still learning through trial and error. Getting out of the shower or bath made me incredibly cold and began the process of hemolysis. It was hard to warm back up and then, of course, all sorts of other symptoms would start as well.

The hardest part about CAD is that it isn’t just your body attacking your red blood cells, but it’s also what you do. It gives you a false feeling that you have some sort of control over red blood cell destruction. Truthfully, you have only a bit of control. The small things I can do help to avoid full-blown symptoms, but I try to not even get to that point.

A note to doctors: Whether you have a single patient with CAD or many, you must arm them with information. It cannot begin and end with “here are the available treatments, and avoid getting cold or sick.” That is not enough. Explain in detail how they can avoid some hemolysis by warming up their drinks, eating warm food, and wearing layers. Tell them that when they feel hot, that means they are about to sweat, and they don’t realize it, which will result in hemolysis.

Had I known at the beginning of my CAD journey what I know now, I could have avoided so many horrible days of weakness, fatigue, rapid heart rate, and brain pressure. I could have avoided trips to the walk-in clinics because I didn’t understand what was going on. What I have learned is not the final list of what to avoid, but it’s a great start that has helped me and I hope it helps someone else.