Symptoms of CAD caused me to resemble an alien being

What I learned from my first experience with livedo reticularis

by Mary Lott | January 27, 2025

“Oh, man! I think I really blew it.” My heart sunk to my toes as I looked at my thighs and forearms, where a maroon cobweb had appeared on my dusky blue skin. I quickly glanced at my stomach. The cobweb and dusky background were there as well.

That was a sign I’d become too cold and a portent of bad side effects in the coming weeks. I resigned myself to staying indoors for the rest of the day.

I was morphing into a strange being

The problem was livedo reticularis. As the Cleveland Clinic describes it, “Mottled skin causes a bluish-red, lace-like pattern under the skin. … this condition happens when deoxygenated blood pools beneath the skin’s surface. The condition has many causes, including cold exposure and chronic medical conditions.”

I have cold agglutinin disease (CAD) and should avoid becoming cold. This change in my body immediately told me several things. First, I’d overexposed myself to the cold, even though the temperature was only 54 F and I was wearing a warm jacket and gloves.

Second, my blood had deoxygenated. While that’s what happened, I usually think of it as my red blood cells chilling, clumping together, and dissolving. The correct term is hemolysis.

Finally, the Cleveland Clinic says livedo reticularis can be caused by “chronic medical conditions.” CAD is a chronic condition. I’ll never recover from it. I can only adapt.

Rituximab treatment effective in combined CAD, autoimmune disease

What caused the change

Auburn, Alabama, where I live when in the United States, recently experienced a few warm days. The clouds that usually cover our gray, dreary January skies had parted. The temperature had risen to the mid-50s F and was projected to rise a few degrees higher. “Surely, with socks, a face mask, gloves, and a padded jacket, I can pull weeds and drag sticks to the street for garbage pickup,” I thought.

I don’t have a particularly long driveway, about 179 feet. I cannot manage many tree branches at a time, so I had to make several trips. I also stopped every 40 feet or so to catch my breath because CAD makes me tired. It takes me a while, but little by little I can get things done.

After making four trips down and up hauling limbs, I decided to pull weeds. Unfortunately, I forgot I’m allergic to the hairy fibers poking out of blackberry vines, which give me a rash. When I got inside, I treated it with an anti-itch spray. I’d like to blame this on CAD, but it isn’t related at all.

My last and shortest effort of the day involved using a string trimmer. I had to stop and rest after 15 minutes. I began again and lasted for 10 minutes. I’d reached the end of my energy, and as it turned out, so had the battery of my device.

So that’s it! My ears were burning — another warning sign of hemolysis. I’ve always listened to the signals my fingers, toes, and ears send me. When I enter a danger zone for my CAD, my fingers and toes tingle in the tips and then lose feeling.

My normal color returned

The next few weeks will have me paying closer attention to the effects of this experience, including my exhaustion levels. Sometimes waves of fatigue overtake me because of CAD.

Another key sign I’ll be watching for is whether my urine is darker than normal. I keep myself well hydrated, but if hemolysis occurs, the destroyed red blood cells will be eliminated somewhere. Dark urine is a sign to investigate further. It can be difficult for a patient to distinguish between hemolysis and a urinary tract infection.

I’ve learned new things about living with CAD. My trigger temperatures can be as high as 65 F. This month I pushed the boundaries, and they pushed back. As my body changes, I should expect my CAD to change, too.

The livedo reticularis was a new experience for me. It immediately brought to mind a possible new “Star Trek” alien character. I wonder where I can find executive producer Alex Kurtzman’s contact information.

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.

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About the Author

Mary Lott is a southern girl from Auburn, AL, living in Sentani, Papua, Indonesia, where she and her husband have worked for almost 30 years. She has taught sixth grade to missionary kids. Now, she designs websites, gardens, SCUBA dives as often as possible, and uses a motorcycle as her primary mode of transport. Their three kids have grown, but this gap is filled by two Papuan boys from one of the island’s interior villages. Mary is a surrogate “mom” while the boys attend a private school in town. Since her diagnosis at age 63, Mary juggles life and living at her home, “Ivy Manor East.”