A setback means rest, recovery, and reading for this CAD patient

I had a silly grin on my face. Then a giggle escaped. Finally, I quit trying and gave in to the belly laugh. Pokey, my dog, jumped up from his spot on the bed and glared at me.

I can’t help it. I’ve been rereading C.S. Lewis’ “The Screwtape Letters” in preparation for a book club meeting I’m supposed to lead. The quote that always produces laughs is this: “She’s the sort of woman who lives for others — you can always tell the others by their hunted expressions.” As someone with a chronic disease, I can easily name several of these people.

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Why people hunt help me

I have cold agglutinin disease (CAD), and I’ve been in bed for three weeks, slowly recovering from a medical event. CAD is an autoimmune, hemolytic anemia caused by the breakdown of red blood cells when exposed to cold temperatures. That has caused a host of additional complaints. One thing leads to another!

Columnist Mary Lott’s beloved dog, Pokey, keeps her company as she recovers from a difficult bout of CAD exacerbations. (Photo by Mary Lott)

I knew when getting off my 17-hour flight that had just arrived in Singapore that things were going to be rough. The telltale burnt orange of my urine told me that hemolysis had probably started. That means anemia and subsequent fatigue. But the fun and games had only just begun.

To be clear, I still had significant travel ahead. Singapore is convenient for a long layover and catching up on needed rest during the long journey from the U.S. to Papua, Indonesia, where my husband, Mike, and I live. I used this time to rehydrate and sleep in the transit hotel for about 10 hours. Then I enjoyed a pedicure as well as Changi Airport’s floral displays and butterfly garden. The next day, I continued on to Indonesia.

As I waited for my bags at the carousel when I arrived in Indonesia, a friend came up to me. It was so good to see a friendly face. Then Mike arrived. I just hugged him — which is not culturally acceptable in public — since we had been separated for so long. It was as if a dam had broken, and indeed it had. All the pent-up emotions and stress came pouring forth.

Recovery

I went to bed as soon as I got home and began to read. First, C.S. Lewis for the book club meeting. Then I began a murder series by Verity Bright that’s new to me. I’m now into book six of that series. Pokey, my cohort, was joined by Ginger, a cat we’re taking care of while the owner is out of town. They snuggled and looked after me in my misery.

Ginger is a welcome guest in Mary Lott’s home, pitching in to bring Mary comfort during a challenging time. (Photo by Mary Lott)

All the CAD symptoms I’d experienced before my diagnosis had returned. Draining lethargy caused me to walk no farther than the bathroom or the freezer to grab some ice for my drink. I had bouts of dizziness that kept me grabbing walls and seat backs as I passed so I wouldn’t fall over. The YouTube videos I watched kept getting shorter and shorter as my brain fog grew. These symptoms, in my opinion, were reaching concerning proportions.

I eventually began to feel slightly better, so I started to eat. Too soon! On top of CAD symptoms, food poisoning went right through me. I had tested those eggs, but even so, life became more miserable, if you can believe that.

Today, the brain fog is finally lifting. I’m taking an interest in life again. I’m still not walking-around good, and definitely not hang-out-the-laundry good. I’m enjoy-the-Auburn-University-men’s-basketball-game-against-the-University-of-Mississippi good, however. It was nice to see some of my former co-workers on camera. I think I’ll live.

I’m not quite sure how I would’ve made it through this latest episode of CAD if I didn’t enjoy reading. Some of my favorite authors — Lewis, Bright, O. Henry, James A. Michener, and R.C. Sproul — kept me focused on other things rather than myself. My love of reading began in the summers of an idyllic childhood. I would travel the world under a tea olive bush and read the day away in privacy and splendor. CAD has just reinforced that love.

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.