Putting CAD in its place and rising above it

Despite my physical limitations, I've found other sources of strength

by Mary Lott | May 20, 2024

“Amen.”

The prayer and request for a blessing before our meal ended and we unclasped hands. The cooked hamburger with a tomato topping, aka “meatloaf,” caused my mouth to water as my husband, Mike, started serving the plates. I was searching for a topic to write about. Afin, our oldest boy, suggested, “What is stronger than …?”

“CAD!” I finished for him.

“A lion,” he answered. “A lion is stronger than CAD.”

What is CAD?

CAD, or cold agglutinin disease, affects my whole family, as it limits my abilities. This website describes it as “a rare autoimmune disorder in which self-targeting antibodies attack and destroy red blood cells at low temperatures.” That is a nice, sterile description. To me, CAD is fatigue, pain, and an assortment of ailments. I don’t make firm plans because CAD can affect anything.

I am physically challenged by the disease. I used to be able to swim, literally, for miles. My ideal vacation involved going for an early morning swim that lasted until it was time to fix supper. Now, I’m happy if I can swim 800 yards without resting.

As for Afin’s suggested lions, I don’t think I’d even try to resist. I’d just jump into their yawning jaws and pray it would be quick.

Daratumumab effective as CAD treatment in over half of patients

Things stronger than CAD

Physically, many things are indeed stronger than CAD, not just lions. I can be defeated by air conditioning or stepping into a mountain stream. However, there are metaphysical things, just as real, that are also stronger than CAD. These enable me to rise above my symptoms and lead a victorious life. Life is more than our physical bodies.

The first thing that comes to mind was evident at that supper table — specifically, my family and friends who support me. These are very willing volunteers who run errands for me when it’s too cold outside. One friend brings over meals without me having to request it; she is kind like that. My family doesn’t call attention to me when I audibly wince over a sudden muscle cramp, but they’re always ready with a hot pad to help. The emotional support of my loved ones enriches my life.

Knowledge of my disease gives me mental strength to overpower it. I take advantage of videos that help explain treatments. I listen to webinars to add to my understanding of the scientific progress being made. I inundate my medical team with questions and demands to ensure that I’m following the best plan for managing this rare disease. A thorough understanding of cold agglutinin helps me choose activities that I can do. That is a win in my book.

CAD can cause depression. It is wearying to always be tired. Many “CADdies,” as we call ourselves, often exclaim, “I am tired of being tired!” Oh, yes! That is me. It is difficult to imagine “rising above” your illness when you are constantly limited by it.

Rising above anyway

CAD depression can be quite strong. Lack of sufficient oxygen being carried to our brains can affect their function. But, in my experience, stronger still is a good spiritual foundation. I read the Bible, and my relationship with God enables me to persevere through life. I take refuge in verses such as Psalms 56:3-4: “When I am afraid, I put my trust in you. In God, whose word I praise, in God I trust; I shall not be afraid. What can flesh do to me?” This counteracts the negativity pouring into my thoughts.

CAD permeates into every action, every day. Do I have enough energy to attend a party when I must work the next day? Can I enter the grocery store, or will the air be too cold for me to breathe? I must consider whether every action will exacerbate my symptoms, and to what degree.

Physically, I can be overwhelmed, but that isn’t the end of the issue. Emotional, mental, and especially spiritual strength not only help me to live, but also to soar to heights far above anything CAD can do to me.

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.”