Packing for a move conjures an unwelcome guest: Joint pain

My family recently moved to Las Cruces, New Mexico. Boxes, packing paper, and tape have been a constant over the past few months. I’m grateful that my husband and sons are experienced movers. We all have a system, a rhythm to packing that we don’t even discuss. I pack the fragile items; my husband takes care of the books. My oldest son, Julian, handles the heavy lifting, and Caeleb, my youngest, focuses on his room and electronics.

The move went well, but an unwelcome guest tagged along.

That guest was hemophilia.

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Both of my sons — Julian, 29, and Caeleb, 19 — have severe hemophilia A. Julian’s journey has been relatively smooth, free from the joint bleeds and hospitalizations that shaped his brother’s experience.

Caeleb, on the other hand, has lived with an inhibitor since 11 months of age. This complication made treating bleeds difficult. Over the years, he’s developed two target joints and endured numerous port placements, post-traumatic stress disorder, needle phobia, and a significant loss of mobility, to name a few of the obstacles.

While a new treatment, Hemlibra (emicizumab-kxwh), has helped cut Caeleb’s bleeds, the long-lasting effects of his early years remain profound.

When it starts to hurt

During the move, Caeleb did his best to pack boxes. When it came to lifting and moving them, however, it was too much. Tearing down his room and packing his clothes and books proved exhausting. He wasn’t out of breath; he was in pain. That especially and increasingly affected his knee and ankle. He often had to stop and rest.

However, there was something else: frustration.

Caeleb’s frustration was evident. He admitted that he hesitated to say anything about his pain for fear I’d think he was trying to get out of work. Even now, my son struggles with the aftermath of hemophilia despite no longer bleeding. The active bleeding episodes may be behind us, but the pain, both physical and emotional, is ever-present.

My column is titled “Hemophilia 24/7,” and the name still rings true. Hemophilia doesn’t take a break and go on a Disney cruise. It doesn’t take a break for significant life events, such as moving. For Julian, hemophilia may no longer be a daily presence. But for Caeleb, it’s not about the bleeding. It’s about chronic pain and living as a person with a disability. Embracing these conditions is hard in a world that often overlooks invisible suffering.

The move was successful despite hemophilia coming along for the ride. Without asking for permission, it appeared as a reminder that it won’t leave and will always be a part of our lives. But we keep showing up with patience, pain, and perseverance.

And a mountain of grace.

Note: Hemophilia News Today 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 another 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.