In early 2023, about a year after I shared my son’s story of Caffey disease, I heard from another parent going through the same thing for the first time. Krystyna contacted me after reading my article and shared her son’s story with me. Our boys have many similarities and I was able to offer some comfort to her by sharing an update of how well my son’s legs had recovered since the first impact of Caffey disease. Her son was […]
Author: Ava
Interview: Discovering Caffey Disease in a Bulgarian Infant.
In early 2022, I shared the story of my youngest son’s journey with Caffey disease. One of my biggest takeaways from our experience was that I felt alone; after his diagnosis I searched desperately for another parent’s personal experience, but I only found scientific papers and medical briefings to read. Several months later, I told my husband I never wanted another parent to have to go through this process alone. I started writing our story to put out into the […]
2023 Yearly Digest.
I’m grateful to be welcoming in the new year by cataloging the important parts from the previous year. It helps me have the right mindset going forward. In preparing to write this 2023 recap, I enjoyed going over details of events that I had already forgotten about. I am so grateful that I hold myself to doing this annual digest, even though it’s more for me than the readers of this blog, because it brings out incredible reflections on the […]
Having a Lip Biopsy for Sjögren’s? My Detailed Experience.
Living a seronegative life isn’t always the most pleasant for those of us with autoimmune diseases. Instead of having our symptoms justified by positive bloodwork, we have to rely on a slew of other diagnostic methods to be taken seriously by many doctors and insurance policies. Around five years after my onset of dry eye disease – and a change in medications for my autoimmune disease – I began to experience dry mouth. Once I had both types of dryness, […]
2022 Yearly Digest
It took me a long time to write my 2022 digest and it wasn’t just because so much stuff happened over the last year. It was partially because my family has been taking turns having rough colds for weeks – months, really – and it’s hard to get anything done when we’ve all been so sick. But it’s also because I always go through my Instagram posts to see if I forgot anything and I just couldn’t stop staring at […]
I lost my mom.
I’ve lost a lot of things this year. I lost the ability to take much needed antidepressants due to my Sjogrens. I lost days to mental and physical illness. I lost faith in some important things for a time. I lost my gallbladder. But none of it compares to what happened in September. Two months ago, I lost my mom. It’s hard to believe I’ve been living for two entire months since she passed. Right now I feel the grief […]
Living in burnout.
“You’ve burned through all your serotonin.” In one sentence, my therapist captured it all. She summarized the burdens of my life that were heavy and numerous. Too heavy. They weighed on me and sometimes felt like they were taking away my options. I was going through a deep level of burnout. Most importantly, she emphasized that it wasn’t my fault. Instead, she explained the scenario – that she has seen far too often – where my brain had essentially burned […]
Did you notice?
Have you noticed how a chronic illness affects a friend or family member? It might impact them in ways that are hard to see sometimes.
Having My Second Baby: A Birth Story.
Today my second baby boy turns one year old. His birth was so similar to my first son that it seemed fitting to share his birth story on his birthday in the same way I did with my first. There were so many similarities between the two births that I can’t help but compare them. I’ve been struggling with writing this story because it’s hard for me to think about it for long periods of time, as was the case […]
Celebrating Lupus Awareness Month + a New Lupus Coffee Mug.
There’s a few more weeks until Lupus Awareness Month starts and I always look forward to sharing articles, stories, and photos about my life with lupus. This year I’m celebrating lupus awareness in a new way by sharing a product that I created: the lupus strong coffee mug. I’m posting ahead of time so that you can add one to your cupboard (or win one!) if you’d like to use it for spreading lupus awareness in May. This coffee cup […]