Five Ordinary Items That Are Unique to Our Hemophilia Home
by: Alliah Czarielle
Living with hemophilia entails some interesting household items
In the hustle and bustle of daily life, we often overlook the extraordinary within the ordinary. My husband, Jared, has hemophilia, and we’ve found that living with the bleeding disorder has a way of sprinkling our lives with one-of-a-kind situations that might seem mundane to us but are fascinating to those who don’t share our journey.
Today, let’s take a peek into that world as we explore five unique items you can find in our hemophilia home.
1. Clotting factor in the fridge
Opening our refrigerator, you’d probably expect to find milk, veggies, and Tupperware containers filled with leftovers. And you will. But now and then, you might also find a couple boxes of clotting factor — which helps to restore normal blood clotting in hemophilia patients — blending in among the everyday food items. It’s like a secret stash of magic potions ready to turn a catastrophe into a minor hiccup.
These boxes remind us that our kitchen isn’t just for culinary adventures; it’s also a hub for medical miracles.
2. The fancy tourniquet
To us, this item is like what a fancy rope might be to an outdoor explorer. It’s a sleek and handy contraption designed to make IV infusions a breeze. It’s our trusty sidekick when it’s time for Jared to have an infusion, and it never fails to amaze guests who wonder why we have what looks like a gadget from a sci-fi movie sitting on the kitchen counter.
3. The butterfly needle collection
Our bedroom might seem like an unlikely place for a medical exhibition. After all, bedrooms are supposed to be relaxing and (ideally) not reminiscent of a trip to the hospital. But there it is: a huge box of butterfly needles displayed in plain sight!
We simply never bother to put the box away. Besides, Jared infuses at least once a month, so it’s good to have easy access to his tools. We sometimes wonder whether people would find us sketchy upon catching sight of our needle stash. While our needles are of course totally medical in purpose, the thought always gives Jared and me a good laugh.
4. Vial adaptors galore
These little gems are quite nice to have. They make the process of mixing sterile water with factor IX powder concentrate a breeze! In addition, they ensure that not a drop of precious clotting factor goes to waste.
And gems they are indeed, considering how hard it is to find them anywhere here in the Philippines, where we live.
When we prepare factor using these vial adaptors, it looks like we’re performing a miniature science experiment. But in reality, it’s just another day of trying to tackle whatever challenge hemophilia might throw our way.
5. A cane for debilitating bleeds
The residents of our home are ages 30, 29, and 4. There are no seniors living here, and yet we have a cane. It’s not your typical walking cane, but one specifically chosen for its sturdy support. We have it in case Jared has a debilitating bleed.
Most people have an umbrella for unexpected rain; we have a cane for unpredictable bleeds. It reminds us that being prepared for the unexpected is a sign of strength and resilience.
In our hemophilia home, these items aren’t just simple objects. They serve as daily reminders that while our lives may be a little different, they’re also filled with courage, determination, and a dash of humor.
So the next time you visit someone’s home and spot something out of the ordinary, take a moment to appreciate the unusual stories and challenges that make their lives special. For those of us in the hemophilia community, let’s continue to embrace the extraordinary within our ordinary, finding strength in the everyday items we use on our journey. After all, it’s the little things that often matter the most.
Source: Hemophilia News Today, A BioNews Brand, September 2023
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.
About the Author
Alliah Czarielle Alliah Czarielle, or Cza, is a writer, entrepreneur, and digital marketer based in Marikina, Philippines. She is married to Jared, who has severe hemophilia B and a seizure disorder. They have a young daughter and two other “babies” — a dog and a cat. Cza herself is diagnosed with ADHD and bipolar II disorder. This allows her to offer a unique perspective on navigating various aspects of young adult life (e.g. relationships, career, and parenting) with chronic health conditions. In her free time, she enjoys collecting fountain pens, supporting small businesses, traveling across the country, and exploring local cafes. She continues to blog like most 90s kids did in the Internet’s early years, sharing her thoughts and interesting discoveries on her personal website, czaofalltrades.com.