Wishing for Pain-free Play in the Joy of Puddles
How the pain of hemophilic arthropathy has taken away a childhood pastime
A dreary day is unusual in the desert of New Mexico, where we live. When it happens, the sky opens, releasing a much-needed downpour of liquid gold. The dry ground is soaking up this scarce commodity. It’s a bad hair day for many who aren’t used to double-digit humidity, and a day to stay inside and enjoy the beauty of the dreariness.
However, my dogs are embracing this strange occurrence of rain by running, playing in the mud, and barking at the invisible thunder. They are living their best life with spunk, energy, and no care in the world.
The rain coincides with the change of the season. As a result, the temperature drops and the barometric pressure decreases, causing fluid in the joints to thicken and stiffen. This often increases pain for those who have arthritis.
My youngest son, Caeleb, is 16 years old and has hemophilia A. He also has hemophilic arthropathy (HA), which is similar to osteoarthritis, also known as degenerative joint disease. Unfortunately, this change of season is causing Caeleb to have a tough time with joint pain. It breaks my heart to see him struggle.
The rainy days remind me of when I would take Caeleb to stomp in puddles, his giggling reaching the heavens, warming my heart with each splash. But unfortunately, those beautiful, rainy days now bring pain.
I would give anything for my son’s joints to be healthy. I want him to run with his dogs and play sports. But running is challenging for my son, who relies on a cane and walker. In the bleeding disorder community, treatment has improved tremendously; many do not have major joint damage. Therefore, the idea of limitations is inconceivable. Most people with hemophilia have very active, healthy lives, yet many have endured severe joint damage due to years of bleeding. My young son is a victim of this damage.
While it’s a victory for some with joint damage that they can still participate in sports and have few limitations, this is not the case for Caeleb. Success for my son is when he can endure an entire marching band rehearsal. The band accommodates him by having him play synthesizer in the pit and not actively march, yet his pain still gets so intense that he must often leave rehearsal early.
I want my son to jump in puddles again. While his pain keeps him from them, we’ll appreciate the sheer joy of our muddy dogs. It sounds silly, but these beautiful creatures give me hope and delight with their wild spirits. It’s the same spirit that my Caeleb embraces, and in time, I pray that he finds that joy again.
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.