Spring is a wonderful time of year when you have cold agglutinin disease (CAD). When you have CAD, you would have spent the last 6 months dressed in many layers and avoiding outdoor activities.
Now it is spring and like all other animals, we can finally come out of hibernation. Unfortunately, things are not perfect yet. I have learned over time that spring can also come with challenges. This is the point when I need to be extra careful as I need to relearn what to wear to be safe during the seasonal transition. I know it sounds simple but it isn’t.
In fact, it gets really frustrating. The frustration stems from not being able to feel when you are too cold until you are in fact too cold. I usually don’t realize it until it’s too late and noticeable hemolysis starts.
The past week we have had beautiful weather. It has been in the 80s; it’s too hot for me. My preference is the mid-70s. This has been the perfect temperature for me. I do not get overheated, therefore I do not sweat and I am not cold.
This past week has had its challenges, the extreme temperatures threw me into needing to make decisions without preparation. I know it sounds weird, but I must follow the weather more than most to prepare how I will dress and to set the temperature in the house.
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I do not have central air, and I needed to put air conditioners in the windows. The issue with that was that next week it will only be in the mid-50s, maybe 60s. My sons put in their air conditioners and I felt we could muscle through the 3 days of heat with the rest of the house.
What I experienced was insane. When I went to bed that first night it was 78 degrees in my room. To say it was hot was an understatement. I put the fan on and faced it away from me. I have learned from past experience that facing the fan toward me causes me to go through the hot/cold combinations that cause me to stay awake all night and then, of course, hemolysis starts.
I was smart. I wore pajama shorts, and a T-shirt and went to bed thinking I would be fine. Within a few minutes, I was freezing in a room that was 78 degrees. I put on pajama pants, and socks and went under 5 covers and then I was perfect. How in the world is that OK?
I slept like a baby, with no sweating. I was not cold and most importantly no obvious signs of hemolysis. You would think I would have been sweating. but no, and I have no idea why.
During the morning hours, it was still too cool so, as usual, I wore leggings under my pants, a short sleeve shirt under a long one, and wool socks. It is very common for me to put on and take off a sweater all day long. By midday it was hot; I took off the leggings and switched out for regular socks. Believe it or not, I was cold. I put everything back on and I was fine.
The boys convinced me to put the air conditioners on downstairs on the third day and although I know next week it’ll be cool again, I agreed. If nothing else, we will cool the house down for a couple of hours and then turn it off. Air conditioning usually comes with its own issues but so far so good.
I do not understand what is going on with me. It is, of course, something new to look into. CAD comes with so many surprises. Just when you think you can prepare and understand what is happening. something new comes out of nowhere.
I do have my quarterly hematologist appointment at the end of the month. He and I need to discuss what’s going on. Maybe it is something minor, maybe I need more blood tests, or it could be nothing at all, but it’s worth a conversation. I do know that I have never been cold at 78 degrees. I am hoping that my CAD is not getting worse, meaning the temperature at which I would start to hemolyze is getting higher or my antibodies are doubling.