Living with cold agglutinin disease is like riding a merry-go-round

I heard the music of the calliope before I saw the magical kaleidoscope of colors. Fairs always have their smells: cotton candy, hot dogs, and hamburgers. But my 7-year-old self was enchanted by the merry-go-round. Soon the gaily-colored wooden horses were going up and down as we were twirled around and around.

I loved the up-and-down and spinning feelings that the carnival ride engendered within me. But I’m not so keen on the ups and downs of living with cold agglutinin disease (CAD).

In CAD, when red blood cells are exposed to lower temperatures, they clump together, or agglutinate, and are destroyed by antibodies carried by white blood cells. At that point, myriad symptoms — such as fatigue, pain, dizziness, breathing difficulties, headaches, and joint pain — begin to emerge.

People with CAD often don’t realize the problem until it has already happened. That’s where I’m at now.

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My latest whirl

My latest whirl on the CAD merry-go-round began when I returned to Auburn, Alabama, to have potential skin cancer diagnosed. I was not thrilled to begin this ride. The weather was the main challenge. “CADdies,” as we who have CAD call ourselves, must stay warm. But November in Alabama has many fluctuations.

At first everything was fine. The leaves had barely begun to change colors. My doctor appointment was Nov. 4, and I could wear a T-shirt with jeans and sandals. I could be outside. I planned on working in my garden and trying to walk around my neighborhood.

I also purchased tickets to an Auburn University basketball game. The pageantry, glitz, and glitter that surround the games have been part and parcel of my life since 1962.

I opened the weather app on my iPad. Temperatures were in the 60s F, but rain was expected at about 9 p.m., when the game would probably end. No worries! I had a good umbrella.

CAD seems to begin troubling me at around 65 F. I found a parking space about 100 yards away from the venue. Perhaps there were disabled spaces, but I didn’t look for them. I should have. As I walked to the arena, I had to stop and breathe several times.

Once inside, I climbed up to the nosebleed section where my seat was. “Oh, good! Nourishment,” I thought to myself when I spied the concession stand.

I found the exertion had disabled my vocal cords. I couldn’t give my order. The servers behind the counter blinked at me owlishly and waited.

“How can I tell them what I want?” I wondered.

I spied the method. While gasping for air, I pointed to the Diet Coke tab on the drink fountain. After successfully completing my mission, I returned to my seat, where I could rest and relax. My breathing soon returned to normal.

Auburn basketball is, so far, enjoying a successful year. We won! I joined the masses of students and alumni exiting the arena, and then realized my next mistake. It was raining, and I had left my umbrella in the car.

Now I had a dilemma. It was cooler now that it was raining, and I needed to get to the car quickly. But going too fast would require more exertion — a major problem for CADdies. I also had another slight problem: I’d forgotten exactly where I’d parked the car!

I scooted those hundred yards as smoothly as possible. I knew I was in the general vicinity of my vehicle, but one beige minivan looks a whole lot like the next. I used the remote control and got the car to flash and beep at me a few times. Finally, I made it inside. I was dry and not dead!

Now at home

I have been suffering a bit the last few days. Because I was breathing coolish air, I’ve been having breathing difficulties. I have no energy to go shopping or out to dinner. I’m now on the downside of the merry-go-round.

I made a few mistakes. I should have remembered to carry my umbrella. I should have left the house earlier and left the game later to give myself more time and less traffic. I probably should have imposed on my friends to get a ride.

The merry-go-round of a CADdy’s life is like this: You feel good and can do things, but then you make a mistake and go down. And all the time, the CAD merry-go-round whirls you through colorful days and years.

Note: Cold Agglutinin Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cold Agglutinin Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cold agglutinin disease.