The weather in New York has been unusually mild this winter. This is a blessing for me living with cold agglutinin disease (CAD).
Imagine having to avoid the cold and you happen to live in the Northeast. It may seem weird, but it is kind of funny, like a sick joke. You are told when you are diagnosed to avoid the cold. All of the rest you have to figure out yourself, as they never mention that it includes food, drinks, cold showers, swimming if it is cold, and everything you can imagine that includes the cold.
I have some level of control when it comes to food, drinks, and recreation but the weather, I can’t control. I can however try to control my exposure. This sounds easy, but it is not. I usually do not realize I was exposed to the cold until hemolysis starts. Don’t get me wrong, I am always hemolyzing at a low level. I am speaking of evident hemolysis. At that point it’s too late—you were exposed and you need to go through the symptoms until your body rights itself.
At least that is how it has been for me. I am considered mildly anemic as my hemoglobin (HGB) typically hovers in the 10s. In my experience, low 9s and any numbers below that aren’t very good. Part of my health goal is to avoid that. When I was at my lowest, in the 8s, the weakness I experienced made it so I couldn’t get my legs to take steps or my arms to move. It was frightening and no one understood what was happening. Now I know exactly what that is and I take every precaution to avoid that, at least those within my control.
Read about HCP resources for CAD
Here we are at the end of winter and the temperatures for the week look like lottery numbers. It is the abnormal temperature swings that I find to be the hardest part of every season. The logical thing would be to keep a journal of how your body reacted in previous seasons. I have done this and I refer to it often as I forget. This works for reactions to medications and foods but has never helped with temperature control.
It is so weird how my body reacts, and I just can’t get it under control enough to understand the signs before they happen. I equate it to when you have a baby. It is the most painful experience a woman can ever have but our bodies do this weird thing and make it so we can’t remember the pain. Sure, you remember it was terrible, but it ends there. I can tell you this: if we remembered the feeling of the pain we would only do that once.
It is similar to CAD. You tell yourself “I will be prepared. I know how bad it will feel if I do not take certain precautions.” Then the day is warmer than usual and you decide the winter coat is not necessary so you take it off. The next thing you know you are sweating not because you are actually hot from the temperature outside but because your body says you need to warm up and now you feel you are cold because you are sweating, CAD symptoms start and you feel awful. This cycle happens over and over when the temperatures fluctuate. It is frustrating. And it does not end there. It happens even in controlled environments, like in your home.
As the season starts to wind down, and this is every season, I become unsure if I need heat, air conditioning, or a fan. I do my best to cope and keep an eye on the weather. I just had my first bad experience of the season, which put me on high alert again. I must remember that the wind affects how your body feels warmth. It is too soon to take off that extra layer. If it’s rainy and cold you need to be extra careful.
CAD is crazy. Just when you think you got this, the season changes. You must learn your limits all over again and even then it may not be enough.