I’m establishing boundaries — and following them — for self-care

All this summer, I’ve put boundaries around myself. They’re not physical boundaries, like a fence, but boundaries to maintain my self-care. For one, I’ve established environmental boundaries, which help me stay warm. For another, I don’t do certain activities because I want to conserve my energies.

I have cold agglutinin disease (CAD), which is caused by the immune system mistakenly attacking red blood cells after exposure to low temperatures. Just how low those temperatures are can vary from patient to patient and, in my experience, by situation and season. I’ve read that one CAD patient can even maintain her running regimen; me, I’m fortunate when I can walk down the driveway to get the mail and return.

Currently, I’m in the United States to receive my ongoing medical care. In my most recent years, that’s meant visiting my doctor annually, being told that my blood work “looks good,” and scheduling a visit in the distant future. That changed this summer because I had a hemolytic event back in February. I haven’t returned to my standard level of energies since.

Recommended Reading

August 21, 2025 News by Lila Levinson, PhD

New ANX1502 tablet surpasses targeted blood levels in CAD trial

A few boundaries

I’m better today, though. When I arrived from Papua, Indonesia, at the end of May, I was extremely tired. The first boundary I set was limiting my interaction with others at least until my checkup on June 17. That enabled me to get the rest I needed, adjust gradually to the time changes, and limit my exposure to germs and microorganisms. CADdies, a term referring to those of us with CAD, have a lowered immune system and must be extra careful to avoid sickness.

When my doctor evaluated my bone marrow biopsy in July, I was told I was “fine,” but he wanted to see me in October, three months away. I wasn’t given a reason, but I suspect it was because my hemoglobin was 8.8 g/dL in June and had risen to 10 in July. (Normal levels for women are 12 to 15.5.) I agreed then to the shortened timeline between visits. Because of subsequent events, however, I’ve moved that appointment to late December. I think it’ll tax my strength too much to make the flight back to the U.S. any earlier.

With my medical needs behind me, I scheduled a drive to Texas to visit my daughter, followed by a flight to Indonesia. I don’t tend to believe in the Fates, a whimsical reference to the three Fates of Greek mythology — I’m a Christian and believe in divine providence — but it seems the Fates had other plans for me this trip. My car stopped working two hours into it, and I remained stateside to get the repairs.

Dealing with delays

More developments have followed. While waiting on my car repair, my husband, Mike, and I received word that his family wishes an immediate reunion. I waited in Auburn, Alabama, while Mike flew from Indonesia to join me. Mike arrived on Saturday, and I, in my newly repaired car, drove to the Atlanta airport to pick him up.

Afterward, I knew I had to rest immediately. I needed to store my energy for church on Sunday and the reunion on Monday (or today, as I write this column). And I had boundaries on Sunday, too: One that I’ve established and maintain during church is that when I’m tired or dizzy, I just sit; I don’t stand or sing. While those activities might not seem like a great expenditure of energy to someone else, they are to me.

I must watch over my care because no one else can see my internal struggles. They can only see after I suffer a problem, such as coughing when I’m short of breath. So I have to clearly set my boundaries and maintain them.

Keeping the boundary clear

The reunion will be at Lake Martin, about a 30-minute drive from our Alabama house. Like many people, my relatives don’t understand my condition; they just know that “Mary has a chronic condition and cancer.” So I’ve been preparing to explain and describe what occurs within my blood. That’s something CADdies face every day: We must set and maintain our boundaries as we self-advocate.

For CADdies, such boundary setting is not merely a lifestyle choice, but a critical feature in managing CAD. If I become overly tired today, I’ll pay for it with exhaustion for the next two or three days. I must guard against entreaties to swim, go boating, or even converse when I’m tired. A phrase I’ll use is, “I understand it’s hard to relate, but this is what I need to stay healthy.”

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.