How orienteering skills help me navigate living with CAD
Like in my Girl Scouts days, I rely on a map, a compass, and a buddy
Looking down at the compass, I lined up the arrow on the bottom plate with the degrees where my counselor had told me to go. “Turn the compass to make sure the red arrow is showing north,” I mumbled to myself as I oriented my body to face the designated path.
Orienteering, the art of navigating across terrain using a map and compass, intrigued my Cadette Girl Scout self. It wasn’t as easy as it sounded. There were many boulders and blunders along the way.
I peered through the loblolly and scrub pines that blanketed Camp Concharty in Georgia. I could barely see the signpost about 50 yards away from the starting point. Not only were the pine trees in the way, but there were also bushes of some sort that I couldn’t walk through. How would I navigate those obstacles?
CAD requires navigation
I feel much of the same confusion as I navigate the obstacles making up the terrain of cold agglutinin disease (CAD). With every little twinge or pain, headache or tiredness, I wonder, “Is my CAD flaring again?” I run the very real danger of becoming the hypochondriac I was once accused of being. I’ve learned to check my CAD “compass” and “landmarks” frequently.
CAD is a type of autoimmune hemolytic anemia. This results in fewer red blood cells hauling our precious oxygen molecules to the organs in our bodies. We have to deal with myriad symptoms. I develop ferocious headaches. I consider these to be obstacles through which I must navigate.
When I was trying to learn land navigation skills, I developed a habit of looking for landmarks and guideposts. These are items that don’t change much over time. I could count on them remaining the same when I returned at a later date.
CAD also has guideposts. Knowing the temperature at which my red blood cells start to hemolyze is one of them. For me, it seems to be between 55 and 65 F, depending on the amount of time I’ll be out in that weather and what I’ll be doing. Hemolysis, the breakdown of red blood cells, signals the beginning of a season of tiredness and other CAD symptoms.
Another guidepost is the color of my skin. Hemolysis always begins in my hands and feet. If my skin starts turning a dusky rose or blue, I know I need to take immediate action.
It’s important for me to have a “map” to help me when I get lost and CAD doesn’t make sense. Cold Agglutinin Disease News is my map. I can find ideas for communicating my condition to friends and family. The latest news in medical treatments and other developments pertinent to CAD are found in articles written by experts. I carry it in my figurative back pocket and reference it often.
Use the buddy system
One major rule my counselors at Girl Scout camp emphasized ad nauseam was to take a buddy with you at all times. The benefits of having someone looking out for you, warning you of danger, or administering first aid are immeasurable. It was so easy to become confused when counting paces, a way of estimating distances. A buddy would help navigate boulders and shrubs on the path as we made our way to the end of the trail.
It’s important for CAD patients to have buddies with them, too. Mine include my family, especially my relative Jean, who has gone through infusions for another health condition and managed to maintain her godly outlook on life. My other buddies are the members of my medical team at the Spencer Cancer Center in Opelika, Alabama. They know my medical history and can explain treatments.
Finally, I include online forums, such as CADdy Chatter, a private Facebook group created by the Cold Agglutinin Disease Foundation. There we can compare symptoms and treatments. By discussing things together, we can learn what our “normal” is.
Getting through the woods to camp
Navigating my way through the challenges of CAD is different from my orienteering experience. CAD requires mental navigation, while orienteering is a physical sport. While I understood the methods of navigation in theory, putting it into practice was always an adventure. I often got lost, and my buddy would have to take over and get us back to camp.
Between medical treatments and encouragement from my CAD buddies, I know I won’t stray off the path as I navigate through life with cold agglutinin disease.
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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Denise Duca
I found your article very interesting. I was diagnosed last September 2023 also with b cell non Hoskins lymphoma. Every day I learn new facts about CAD but I have a long way to go. I am 83 years old in June. Need to soak up new tricks and ideas to make CAD manageable.
Mary Lott
Thank you for your kind words, Denise. My main advice is stay warm and find an online forum of other patients with whom you can discuss symptoms and responses to treatments. I wish you the best of regards in dealing with your lymphoma. I was diagnosed in 2018, six years ago, with CAD and accompanying lymphoma. I hope you have at least as good a response as I have enjoyed, if not better. God bless you!
Mary Lott
There are new facts about CAD almost every day. It is such a rare disease that it isn’t encountered often enough to gain much attention from the medical community. Therefore, educated guesses are made. It also seems to have a highly individualized manifestation. In other words, my symptoms might not be quite what your symptoms are. I, too, have a B cell non-Hodgkin lymphoma, specifically chronic lymphocytic lymphoma. I understand if I stay warm enough and not breathe cold air, my CAD will be under control. If my CAD is under control, then, my CLLymphoma will also remain in the background. I hope this is true for you, too. Good luck. Thank you for your compliment on my writing.