What I have learned about cold agglutinin disease (CAD) is that it just doesn’t make sense at times. It is crazy how some things kick off hemolysis and fatigue, while others do not.
I was in the shower the other day and suddenly the water got very cold. I was covered in shampoo and soap and thought “Oh no.” I looked down at my legs and I saw that livedo reticularis had started. This happened within minutes of the cold water running on my skin.
I remember I started to panic and did my best to warm up quickly. Here is the odd part: I didn’t experience any hemolysis.
How is it that a cold shower had zero effect on me? It feels like this disease is a build-up of sorts. In other words, the overheating would start if I were to drink something cold and then forget my earmuffs and head outside. Is it a combination of things?
A modified spoon theory where you only get so many spoons of energy a day and when you use them you are done. However, if you do not use them all it carries over to the next day until you have a combination of issues and you just get depleted.
It sure feels that way. I had soda last night; no big deal, I can have it slightly cool, and it doesn’t affect me. The carbonation got me though. Today, my chest hurt with that familiar gas feeling. I walked around as much as I could to get it to come out but it was just stuck. Then I started with an incredible headache. The more pressure I had in my chest, the more my head hurt.
What I realized though is that I felt dehydrated. This, unfortunately, is quite common for me and I usually drink a lot of water, though clearly, I didn’t the past couple of days. To make matters worse I also realized I wasn’t regular.
Read about comorbidities with CAD
So now here I am with multiple issues happening at the same time. I started to feel weak. Dehydration does have an effect on anemia, and I know from experience so do bowel issues. It took hours for the weakness and general unwell feeling to subside.
When I reflect on all of the times I have had CAD flare-ups, I realized it has more to do with dehydration and stomach issues than it has with cold exposure. Don’t get me wrong, the cold does have an impact on me but once I figure out the right temperature for me as the seasons change, I am usually pretty good.
Since dehydration has such a big impact on anemia it makes perfect sense. I can’t figure out what I am doing wrong that I become dehydrated as often as I do. My best guess is the heat. The dry heat in the house does dry me out. I do run a small humidifier in the winter and fall months but it doesn’t seem to be enough. I am sure I probably do not drink enough water in the winter probably because it’s not as quenching as it is in the warm months but still I thought I had that down.
I use to have water consumption down pat as I would number water bottles to make sure I drank enough throughout the day. In thinking about all of this I realized I had switched to filtered water from bottled water. With 6 people in the house, it wasn’t cost-effective, and, worse, we were leaving a huge footprint with the number of plastic bottles we were going through.
In retrospect, these reusable bottles I have been using are great for the environment but bad for me because I am not keeping track. All in all, it seems water is what I need most—and of course, keeping warm.