The Pain of Winter Mornings Is a Reminder of Past Bleeds

Cazandra Campos-MacDonald avatar

by Cazandra Campos-MacDonald |

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Winter is one of my favorite seasons. I enjoy the crispness in the air and wearing sweatshirts and warm, fuzzy socks by the fireplace. My son Caeleb enjoys the same things about winter, but his hemophilia and chronic pain complicate his relationship with the season.

The morning is the most challenging time of day for him, and helping him get on his feet and ready for the day is not always easy.

Recurrent bleeding episodes have caused joint damage to Caeleb’s right knee and right ankle, and cold weather causes the chronic pain he experiences in these joints to skyrocket. To get out of bed, he must use a cane. Despite taking regular medications, going to physical therapy, and using ankle and knee braces, there are days when he can’t get to school until midday, if at all.

Caeleb has missed a lot of school, especially when he endured bleed after bleed as an elementary school student. The weeks he spent in the hospital when he was younger prevented the social interaction he craved, and his time out of school also put him behind in his studies.

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What Pain Means to Me as a Caregiver

Caeleb is now 15, and it breaks my heart when he is unable to get out of bed and get to school on time. He misses band rehearsals and being with friends, and he isn’t sharing in the experiences that other high school teenagers have each day, such as walking down the halls with friends and being in their classes. He also misses special events, such as field trips and school dances. Caeleb’s condition has taken away so many simple things that teenagers enjoy.

I want to push him to get up, get moving, and work through the pain. As a person who is dealing with my own chronic pain issues, I should know better than to force him, but frustration gets the best of me. Getting up and moving are not antidotes for someone living with chronic pain.

So what can I do to help my son? I continue to take him to physical therapy, remind him to take his medications, and keep warm socks and ACE bandage wraps stocked. When it’s needed, I reach out to his doctor and keep the hemophilia treatment center informed of his condition.

Perhaps the hardest thing to do is help him keep his mental health in check. While his limitations cause him physical pain, he also struggles with his emotions. I am grateful he asked for help recently, and is seeing a therapist who helps him work through the emotions that are often bottled up inside.

I want my son to thrive. I want him to realize that there is a bright future waiting for him despite his painful past with hemophilia. I do not want Caeleb to be defined by hemophilia because he is more than his bleeding disorder.

I can’t wait to see where his path leads him. Hemophilia will just be along for the ride.


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.


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