Navigating the holidays can be taxing, even in the best of times, even in the best of families. Navigating the holidays with a bleeding disorder adds to the holiday challenge. Navigating the holidays with a bleeding disorder during a global pandemic? Well, that may be a bit too much to ask.
Nevertheless, we are here, and we must find a way to maneuver through the holiday season with all the unique stressors 2020 has brought us. I am challenging myself to do so with humor. This seems like an easy task, but at times it requires deliberate effort to see the silly moments amid struggle.
I have personally found that if I can tackle the holidays, or any circumstance, with humor, I am in a better space. It is easy to take myself too seriously. In doing so, I increase my stress. If I have or can build the capacity to take a step back and laugh at myself and my situation, it often proves to be incredibly healing.
Struggling with infusions
Last winter, I struggled with self-infusions. I had only been on prophylaxis for a few months, and it could be quite discouraging. I wondered if or when I would ever master the ability to give myself my own medication. I wanted that empowerment!
My record was a total of 12 needle sticks before I finally got the factor in my vein. I was determined! I must admit I looked pretty ridiculous afterward, with tons of Band-Aids and a pressure wrap all over my arms.
I was proud of myself, though. Rather than seeing that experience as a failure, I saw it as a challenge! I was going to master self-infusion one way or another. I was willing to use myself as a pin cushion and fail over and over if it was what it took to develop skills and eventually succeed.
After one particularly rough infusion night, I rewrote a holiday classic to reframe the frustration I was feeling. I later posted this online for my friends and family to see:
’12 Days of Infusions’
On the first day of Christmas, my HTC* gave to me,
An on-time factor delivery!
On the second day of Christmas, my HTC gave to me,
Two ice packs, and an on-time factor delivery! …
Three awesome nurses …
Four compression wraps …
Five perfect veins …
Six butterflies …
Seven big syringes …
Eight infusion lessons …
Nine cool Band-Aids …
Ten alcohol wipes …
Eleven hand sanitizers …
Twelve sharps containers …
And an on-time factor delivery!
*HTC is short for hemophilia treatment center
Many people laughed! One person commented that they would love that many sharps containers! All wanted the five perfect veins. (That wish was my inspiration for the lyrics.)
I enjoyed that other people were able to laugh with me. We could all smile at something I had used to write myself out of a slump.
Which leads me to a rather funny incident that occurred during this same time, when I was learning to infuse. One night, I was excited because I had an easy, successful infusion. My supportive, but slightly naive teen shared this triumph with her friends the next day.
She told them how proud she was of me because I hit my vein on the first try. She said I was so happy, too. One of her friends took her aside and expressed serious concern. She wanted to know if my daughter understood that needles were used to infuse “hard drugs.” She wanted to make sure my daughter was safe at home.
My daughter replied, “Oh it’s not THAT. My mom has hemophilia, it’s a THING. Look it up.” A peer came to her rescue, exclaiming, “It is a thing and her mom really has it!”
I laugh whenever I recall that conversation, mostly for my daughter’s naive sharing of our celebratory moment. Hemophilia can be confusing when moments are taken out of context.
Humor can be a huge source of strength. We may laugh at our infusion attempts, bruises, or others wondering why we walk around with needles. The important thing is that we can recognize the silly moments while living life with a serious disorder.
May you have a joyous holiday season and find laughter in the midst of any struggles you encounter.
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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