Self-care is not a luxury for people with chronic illness
I like to believe that my husband, Jared, and I have a fulfilling marriage and family life, even with chronic illness. Each day, we make intentional choices that align with what we value…
HemoWife — 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.
Featured Post
Say it with me: Disability is not a bad word
When people talk about hemophilia, some deliberately avoid calling it a disability. Instead, they’ll say “a medical condition” or “a health challenge,” as if disability were a negative label. Some who embrace the…
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Kind stranger, don’t worry about my husband’s hemophilia bleeding
First meetings are always awkward, aren’t they? Well, I have the perfect icebreaker: Did you know that my husband, Jared, has hemophilia? Most people I meet are taken aback by this. Those with…
How my husband inspires me to work with my brain, not against it
I’ve been struggling with my mental health lately. For the past two years, I’ve been juggling two or three freelance jobs at a time while also fulfilling my roles as a mom, wife,…
Thoughts on marriage, disability, chronic illness, and love
Marriage is a beautiful thing. People often describe it in flowery terms — “an unbreakable promise of partnership,” “a sacred unity of two souls.” Those who possess a more worldly mindset might regard…
Advice for my younger self on becoming my husband’s carer
Dear Younger Self, Congratulations! You’ve found a person who’ll stick with you for life. What a blessing! Jared happens to have hemophilia B and a seizure disorder, and you’re going to…
Why a holistic definition of health is more useful to our family
It usually starts as an innocent question in an attempt to make friendly conversation with my husband, Jared, and me. “So, how’s Jared? How’s his health?” Those who ask this question are often aware…
Gene therapy for Hem B is exciting, but for us it’s ‘hurry up and wait’
Lately, I’ve been reading a great deal of news about Hemgenix (etranacogene dezaparvovec), a one-time gene therapy approved by the U.S. Food and Drug Administration last November for adults with hemophilia…
Risky play is A-OK, says this dad with hemophilia
Have you ever seen a German playground? They’re infamous on the internet for appearing dangerous in an age of “safe” play spaces. Unlike most playgrounds we know of today, which are…
What a good health day looks like for my husband with hemophilia
It’s 9 a.m. Bright, tropical rays of sunlight force their way through our full-length windows — a signal that it’s time to get out of bed. My husband, Jared, always an early riser, often…
Ranking my husband’s hemophilia bleeds based on pain levels
Last week, my husband, Jared, experienced a bleed above his knee joint. We were out on a day trip when he noticed the first symptoms. He felt a tightness in his knee, which…
The benefits of online shopping for those with chronic illness
Online shopping is one of my guilty pleasures. In fact, as I write this column, I may have spent a significant fraction of the day swiping through hundreds of pages of items on my…
‘Cheerful complaining’ helps me manage chronic illness flare-ups
I’ve been sick these past few days with gastrointestinal issues. What began as a wave of nausea turned into an entire morning of vomiting, followed by a seemingly endless bout of painful diarrhea. I…
