National ‘That Sucks’ Day reminds me of all this weary CAD warrior endures
Even so, my CAD journey has come with many good experiences
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“Hey, Mary! The last home game is on Wednesday. Wanna go with us?”
My Auburn Tigers were playing in the third game of the recent National Invitation Tournament. Yes, I would love to go. I looked at the time the game started. “No,” I shook my head sadly. Tip-off was at 8:30 p.m. “It’s just too late for me.”
I was disappointed, but by that time of the day, I would be dragging around, extra dizzy going up and down the arena steps, and I’d pay for that expended energy the next day and have to stay in bed.
All because of cold agglutinin disease (CAD) and the symptoms it brings.
A day for grumbling
Missing that game came three weeks before National “That Sucks” Day, on April 15, but it counts just the same. And my presence there didn’t matter. Auburn won, 75-69. War Eagle!
CADdies, as some of us with CAD call ourselves, find many aspects of our disease bothersome. We suffer from brain fog, often feel colder, and are always vigilant about anything that might trigger hemolysis, the destruction of red blood cells. To do otherwise could put our lives at risk.
For me, the biggest nuisance about CAD is the crushing, unpredictable fatigue. I’m always anemic. Sometimes I don’t feel tired, but that’s dangerous, too, because I will frequently act on a false sense of energy. Like I did yesterday, when I decided to weed a neglected portion of our yard.
I must do this slowly, as I don’t want to pull out the baby pine trees my squirrels planted for me. I’m also trying to encourage some hosta, even as I want to avoid the crop I grow best — poison ivy. It all must be done carefully, and by hand.
My energy abandoned me when I went to the storage area to get cage protectors for the baby pines. I had chopped down some very thorny green briar vines and other weeds, and as I was coming up the hill, pulling two cages, my energy left me. It was as if a spigot had been turned on and a wave of fatigue came rushing in. I hauled the cages up, but I didn’t place them around the trees, nor did I cart away the weeds. I just went into the house to rest.
Diminished quality of life
Another nuisance of CAD is that it has messed with my quality of life. I missed the basketball game that I intensely wanted to attend. I didn’t change the sheets on my bed for several weeks because I didn’t have the energy. I’m tired of ordering my food from the grocery store. I can manage the walk inside, but the walking around the store is beyond my ability, and right now I’m too proud to use the scooters.
At present, CAD is causing extreme trauma to my self-esteem. I left a job that I really enjoyed. I haven’t found a swimming pool with warm enough water to exercise in. The treatments have made my hair brittle, and I have lost quite a bit of my once-luscious locks. My hairbrush looks like a mouse has slept there!
The things I can’t do at the moment seem overwhelming. I have started taking antidepressant medication to help. To put it bluntly, and in honor of the day, CAD sucks.
Not everything is horrible
The Nerdy Me blog lists “35 things that just suck” to recognize National “That Sucks” Day, and it helped me feel better. But the best sentence was: “I’m not going to stop being positive and start complaining about everything because it’s just not what I preach or believe in.”
There are nice moments even in the midst of my CAD journey. I’ve been touched by how my family rallied from across the country when I became really sick. Two of my friendships have deepened as we’ve shared our lives more openly, and I’m gradually gaining a body of knowledge I didn’t have before. Even on the harder days, I’m grateful to be moving forward with the support of those who care about me, and with a quiet strength I’m learning to recognize in myself.
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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