How a ‘slingshot’ of treatment and care helps me manage my CAD
The weapon and its 'ammunitions pouch' are akin to ways I fight my disease
“Only a boy named David, only a little sling,/ … And the giant came tumbling down.”
My kids sang that song, written by Arthur Arnott, during their early years. For many of us, the story of David fighting Goliath served as our first introduction to the slingshot. It’s a small, portable weapon, easily concealed in a back pocket or disguised as a headband, ready to be used by a hunter or warrior when needed. It could easily be overlooked as a source of destruction.
Cold agglutinin disease (CAD), which I have, is also a hidden destructive influence. I don’t look as if I have a chronic, disabling disease; it can be easily overlooked and was not considered as a problem by those trying to diagnose my presenting symptoms before 2018.
But even a stealthy, short exposure to cold air can start the cold agglutinin antibodies to bind to our red blood cells. The cells then clump together and are destroyed in what’s called hemolysis. My initial symptom is a profound fatigue that makes even brushing my teeth and combing my hair exhausting. I get up, prepare for the day, and go back to bed.
How is a slingshot like cold agglutinin disease?
In the Roman Empire, soldiers known as “slingers” would sling lead pellets at their enemies with slingshots. The weapon caused terror to those who were the target. Because of it, the Roman legions were feared throughout the Western world.
I fear the unseen cold agglutinins slinging their deadly “missiles” at my red blood cells, breaking them down and robbing my body’s organs of needed oxygen. I can be taking a walk through the woods on a beautiful spring day, enjoying the burgeoning life around me, when I carelessly step into a brook babbling next to the path. Wading through streams is a childhood joy relived. Alas, the chill of the water starts the hemolysis process.
Another unsuspected consequence that CAD slings at me periodically is prolonged fatigue following an infection. I had a slight cold during the Christmas period. It wasn’t serious, just a sore throat and runny nose. But two weeks later, I still felt tired. I had no energy and canceled many appointments in January and February. That was all because the complement system was activated by the cold, resulting in CAD symptoms.
How is using a slingshot like fighting CAD?
Slingshots, while definitely weapons, do have their positive uses. Early man used slingshots to bring down game and provide nourishment for the family. In the management of cold agglutinin disease, my own slingshots have been filled with Rituxan (rituximab), bendamustine, an understanding and enabling family, and a lifestyle designed to prevent hemolysis.
It helps me to imagine living with CAD as a war of attrition. The Oxford dictionary defines that phrase as “a prolonged war or period of conflict during which each side seeks to gradually wear out the other by a series of small-scale actions.”
At present, my treatment is limited to management rather than an all-out victory. But in reviewing recent webinars, I’m encouraged that new pebbles may be added to my slingshot’s ammunitions pouch to treat CAD. This war of attrition might eventually turn into an all-out victory for me.
I still have a tendency to minimize the power of slingshots. Yet a shepherd named David managed to defeat one of the most powerful opponents of the early Middle Eastern world. An autoimmune hemolytic anemia like cold agglutinin is quite a powerful opponent. I’ll continue to use my ammunition of infusions and careful lifestyle to defeat my Goliath.
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.
Comments
Stephen Tung
Always enjoy reading your articles, Mary.
My CAD is considered light. I just spent 4 weeks traveling visiting families and friends. From Boston to LA, then to Hong Kong, then to Shanghai, China, back to Hong Kong, back to LA, then back home.
I did develop Chronic Eczema past winter. My hematologist said he was not aware related to CAD. Annoying though.
Best wishes.
Mary Lott
Thank you, Stephen, for your kinds words. I’m going to be doing a bit of traveling myself next week, Jakarta, Singapore, Somewhere else I haven’t figured out yet, and then, landing in Atlanta. I don’t need to CAD to be tired from all that. While the eczema isn’t perhaps caused by CAD, I bet dollars to donuts that your healing time is affected by it. Good luck. ~~ Mary
Eileen Patterson
Dear Mary - I always look forward to reading your comments on CAD. As a fellow sufferer, they give inspiring advice!
Please keep coming with more contributions, as I'm looking forward to them, trying to keep my Hb level up with the frosty mornings that we get at this time of the year in south-eastern Australia.
Kind regards from Eileen, in Ourimbah NSW.
Mary Lott
I will be thinking of you this summer, Eileen. Usually, I am on your side of the world, and even in your hemisphere, although this close to the equator makes seasonal temps non-existent. The clear, crispness of frosty mornings make them beautiful, that is, until I draw my first breath. I recommend hot tea or hot chocolate. Thank you for your compliments. ~~ Mary