Like the stars, CAD is both constant and ever-changing

Tilting my head upward, I looked to the stars. There it was, the easiest constellation for me to identify: Orion. I identified it by the three stars in a row that make up his belt, and then looked down to his right side — my left — and saw the faint stars that make up the dagger of the constellation. There are other identifying stars, including Betelgeuse, a red star in his shoulder. I’ve been looking at Orion since around 1963, when I was at Girl Scout camp.

I am by no means an astronomer. I can’t identify all the constellations. Yet I enjoy looking at them because the stars are always there, a constant fixture that reassures me of normalcy in life.

I am, at the same time, aware that nothing is constant. Celestial permanence is an illusion. It’s expected that Betelgeuse will explode in a supernova event in 100,000 years or so. On a smaller scale, I watch the stars and moon seem to move across the night sky (really, it’s the Earth that’s rotating), my view of them changing with the seasons.

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August 26, 2024 by Mary Lott

How living with cold agglutinin disease has changed my life

CAD involves constant change

Those of us with cold agglutinin disease (CAD) also experience permanent change. CAD is a chronic disease, meaning I’ll never be rid of it. I must learn to live with it and adapt to the challenges it brings.

Although CAD is a constant bane in my life, the manifestations change all the time. I find that if I have been spending time in a warm climate, such as the tropics or an Alabama summer, the first breath of cooler air, lower than 65 F, is a major problem for me. Conversely, if I’ve encountered temperatures below freezing, I can move around in temperatures in the upper 40s and 50s with few side effects.

Other “CADdies,” as those of us with CAD call ourselves, experience the variability of this disease. On a recent Zoom call hosted by the Cold Agglutinin Disease Foundation, I heard one participant exclaim, “Why does this disease change so much?” With me, it doesn’t seem to change so much as it presents differently. Almost every day involves adjusting to yet another effect of CAD.

Just recently I returned from my home in the United States to my home in Papua, Indonesia. I made the error of choosing an inexpensive routing that took me through Canada. At one stop, I had to disembark down a metal ramp and cross an icy stretch of pavement, all while snow was gusting around us.

I had purchased a winter coat just in case I needed it and I had a scarf, but I hadn’t brought my gloves. I spent only a few seconds in that awful weather; still, my fingers became dusky in color. Over the next several hours, a tightness in my breathing developed and then resolved. These are routine symptoms of CAD for me.

What hasn’t been a common effect is dizziness. I experienced this symptom perhaps 15 years ago, but since my diagnosis and the start of treatment in 2018, it’s been but a distant memory. This week, however, I’ve found that in my first few steps after resting, I stagger through my house. It fades quickly, but unfortunately, the dizziness has returned.

My heart beat as if it were pounding out of my chest. I began developing a bit of a headache. I definitely saw my urine turn burnt orange, which may signal hemolysis or a urinary tract infection. Time will reveal which.

Changes I’m feeling now

I planned to use this week to recover from my excursion halfway around the world. I have hopped on my motorcycle exactly twice and run a quick errand each time. I realized halfway through each trip that it is too early for me to go anywhere. I may look normal to others, but underneath my skin, my muscles are quivering and my insides are the consistency of pudding. CAD has made this response to travel a permanent change for me.

Every day with CAD is an adventure as I determine what I can do and how I need to adjust to the day’s particular challenges. Every CADdie, because we’re at different stages in our lives and have different situations affecting us, experiences symptoms at various intensities. Like the stars, CAD is an ever-changing permanent reality for us.

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.