As I look back on where I was at this time last year, I can honestly say that 2019 has been a fantastic year. My health has improved tremendously. My book, “Dear Hemophilia, Finding Hope Through Chronic Illness,” has been published. And most importantly, my sons with hemophilia have taken control of their bleeding disorder.
My adult son, Julian, has been living on his own and attending college. He has done a fantastic job of financially supporting himself while managing a full load of classes. He has learned some hard lessons in time and money management that have opened his eyes to what he calls “adulting.”
I am most proud of how he has handled his bleeding disorder. He has been infusing regularly. As a mom that makes me happy. Earlier this year, he had an incident that caused him alarm. He called me to talk through what he needed to do, and I encouraged him to call the hemophilia treatment center (HTC). He handled it beautifully. The years of talking him through the process of treating a bleed, ordering factor, talking to the pharmacist, and learning about insurance are paying off. It just takes time.
My youngest son, Caeleb, has taken charge of his regular treatments. He gathers his supplies and medication every other Sunday night and injects his medication on his own. His dad and I will remind him that “it’s ‘Libra (Hemlibra) night!” Seeing him take control of his own treatment has not only made me a happy and proud mama, but it has empowered him as a young teenager.
Caeleb has also been dealing with quite a bit of chronic pain because of damage in his two target joints. As a teenager who needs to rely on crutches almost daily, he is coming to terms with his pain. There are aspects of living with pain that simply need to be accepted, and for a 13-year-old boy, that is not an easy pill to swallow. He has done a tremendous job of managing his hemophilia. I couldn’t ask for anything more.
Maybe your year has been less than fulfilling and you are anxiously waiting for the ball to drop and usher in 2020. If that is the case, what are you hoping to do differently in the New Year? Here are a few things to consider regarding your care:
- Talk to your HTC about your treatment: Is your current treatment working well, or should you talk to your provider about other options? Do some research and have those conversations.
- Infuse/treat regularly: It is easy to fall out of your treatment routine. Get back on track and be compliant with your doctor’s orders. You may even have fewer complications during the year. Work with your HTC to find the routine that works for you.
- Get involved with your local chapter: Has it been a while since you have been to a local chapter event? Maybe you haven’t been involved at all. Reach out to your local chapter and find an event to attend. Getting connected with your community can be life-changing. Your story may be exactly what someone else needs to hear.
May your holiday season be filled with joy, happiness, and peace.
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 Services, and are intended to spark discussion about issues pertaining to hemophilia.
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