Amid the many CAD symptoms, some are particularly personal
If I could only do something about my nails, my hair, and my voice ...
“Oh, good grief!” I rolled my eyes as I looked at my fingernail. “I don’t have time for this right now.”
I was busy packing on a Tuesday morning as I prepped for my trip back to my home in Indonesia from my home in Alabama. The last thing I wanted to do was sit down and file my nails. But trying to fight this quirk of mine is almost impossible. I hate raggedy fingernails, and it would distract me from my purpose. I got out an emery board and went to work.
I looked at my nail a little more closely. It wasn’t torn off. It looked like it’d been clipped off-center, and the off-centeredness of the thing was distracting. It was also discouraging as this sort of event, especially when it happens frequently, makes me suspicious that my chronic anemia is increasing.
Chronic anemia is a hallmark of cold agglutinin disease (CAD), an autoimmune, hemolytic anemia I have that’s triggered by red blood cells (RBCs) being exposed to cold temperatures. When that happens, the RBCs clump together (agglutinate). Then the RBCs are attacked by a person’s white blood cells and are destroyed.
CAD has many symptoms, including anemia, fatigue, unexplained joint pain, and skin discoloration, especially in the fingers and toes. I’ve noticed a few other signs that indicate I need to slow down my pace — which is already extremely slow.
Personal signs of growing anemia
My fingernails become brittle and break easily. That’s what happened in the episode I described above. Before I was diagnosed with CAD, I’d attribute this symptom to banging my fingers on something. Yet the nice, straight-line clips were too precise. Sometimes I’d see a line develop, and from there the outer nail portion would break off.
Not only that, but my nail growth is slowed. I usually get pedicures at one-month intervals. However, there are times when I can wait six weeks, two months, or even three months between spa visits. My observations are not scientific, but rather a heads-up to me that lifestyle precautions need to be taken.
I’m always tired, yet the degree of tiredness varies. Is it a “too tired to move the blanket off me” tired, or is it a “one circumnavigation of my yard” tired? The answer to that is another factor in my personal assessments.
Another quality is one that I really, really, extremely-really hate. My hair falls out. I used to have wonderfully thick hair, but sadly to me, that all changed with a bout of dengue fever in 2013. It began to slowly regrow, although not to its former glory, until 2018, when I had a catastrophic hemolytic event that led to my diagnosis.
Since then, it is a roller coaster ride of slight regrowth followed by clumps of gray hair in the sink. I don’t think I’m very vain, but I’d like to have something to work with. I don’t think bare scalp is a look that makes me comfortable. At present, I’m in the losing phase and not the regrowth phase.
As missionaries, my husband and I receive our salary from monetary gifts from churches and individuals who partner with our work. In turn, we report back to our supporters telling them the results of their investments. I love doing that. Imagine my chagrin when I stand up to speak and my voice shuts off — yet another CAD symptom with a personal impact.
My voice has been shutting off for almost two decades now. Usually such an event is sudden and unexpected. I often can “stage whisper,” or whisper a shout. That technique works when I’m speaking with individuals or an intimate group. This phenomenon correlates with the lack of oxygen available in my lungs.
Practical application of this knowledge
I’ve tried telling my medical team about these signs. My team has lots of attentive listeners. They nod their heads. They make sympathetic noises. However, the things I’m sharing can’t be measured or microscoped. There are no quantifiable tests to measure these signs.
They are, however, signals to me. When these signs ramp up in quantity or intensify in my experience, I give myself to rest and don’t push. Today, for instance, I’m having breathing challenges. I just finished a four-day, round-the world travel and cannot talk. Instead of calling for help over the difficulties, I’m babying myself by watching old movies and pampering myself. That’s life with CAD.
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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