Living with cold agglutinin disease, and still thankful for so much

I want to set each day with an attitude of gratitiude

by Mary Lott | November 20, 2023

“It is good to give thanks to the Lord and to sing praises to thy name, … to declare your lovingkindness in the morning and your faithfulness by night.” — Psalms 92

I dance around my bedroom singing those words to the tune of “If I Were A Rich Man” from the musical “Fiddler on the Roof.” It sets the tone for my day, cultivating an attitude of gratitude. I am living with cold agglutinin disease (CAD) and there is nothing I do without considering how it will affect me every day. I could grumble and complain about this, but I choose to be thankful instead. There is an aspect about CAD for which I can give thanks.

In CAD, self-targeting antibodies attack and destroy red blood cells at low temperatures. I was diagnosed in 2018, which brought a major change to my life. I am thankful for learning more about our magnificent human body, which constantly renews and heals itself. Although CAD destroys my red blood cells, for example, my bone marrow compensates and produces reticulocytes, or baby red blood cells, at an amazing rate.

What’s to be thankful for? I’m thankful for the pastor at one of our sending churches — which each pay part of our salary for our missionary service — who arranged for me to speak with a doctor who attends the church. That doctor immediately recognized my symptoms and arranged for me to see a hematology oncologist, who was trained in treating CAD. After a long search for a doctor who could recognize and treat my symptoms, I’m thankful that my team is located in my hometown.

Independent Living for CAD Patients

Thankful for anemia, new words, medical advances, and more

I have a confession: I’m lazy and there are things I don’t want to do. CAD enables me to say “I’m just too tired” to many activities. I don’t have to lug my carry-on through airports. I can use a wheelchair. I can park in handicapped parking spaces closer to stores. I am thankful for not having to walk long distances.

I am thankful for my fancy new vocabulary. I’ve long been a logophile, a lover of words. I used to play a game with my students called “Stump the Teach.” They would search dictionaries for obscure words and if I didn’t know a word’s meaning, the students would get a point. If I knew the word’s meaning, I’d get two points. Words that CAD has added to my vocabulary include acrocyanosis, hemolysis, agglutination, and lymphoproliferative.

I am thankful for advances in medicine. When I was younger, I often despaired that I wasn’t born in the Old West in the 1870s or 1880s. That changed in 1984 when I needed a C-section. Now I’m even more grateful because Rituxan (rituximab) wasn’t developed until 1997. If I had gotten my wish of those younger years, I would be dead now.

Thankful for writing opportunities

My fourth-grade teacher bought grammar workbooks and put our class through many exercises. She assigned reports and emphasized that we couldn’t copy from the encyclopedias that we all used as our reference material. We were taught how to paraphrase, how to read and correct our reports, and the rudiments of sentence and story construction. She was tough. She was firm. She was good. I am thankful for her work, which pays off every month with this column.

I am thankful for BioNews, which has given me this writing opportunity. I’ve long dabbled in writing, as a reporter for the North Jackson Progress, in a children’s book, and by finishing NaNoWriMo — twice! But now I can truly claim I’m a professional writer. I’m having so much fun!

The long view

Finally, I am thankful for my support group of friends and my Facebook CAD group, who share this journey with me and listen to me let off steam. Having friends to walk through life and spend time with is an invaluable treasure, and I give thanks for them.

This list of is only one small part of my life. I am blessed on so many fronts. Every life has hills and valleys, defeats and victories. As I step back and take a long view of my life, I find that the challenges and temporary defeats make the victories, which there are more of, all the more sweet.

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.”

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