Uncompressed: Seanna's Journey to Life 2.0

15/11/2025

This was true for Seanna.. her hEDS diagnosis came after her Covid infection, which snowballed into MCAS, POTS and finally all her AVCS 🌻💜

07/11/2025

My dearest sweetest Seanna- my little nunubug. Happy 15th birthday!

We love you more than you will ever fully know. It has carried us through every hard moment and every fight you never deserved to face. You are the center of our world, and nothing will ever change that. My heart breaks that you have to spend your birthday in ICU but together we will get through this too.

I am so very proud of you. You confront pain and fear with real courage beyond your years. You speak up for yourself with sass and determination. You keep going when most people would stop. You have shown strength that is far beyond your years.

You are a brave, thoughtful, determined young woman. Watching you become yourself is the greatest honor of my life. You make me want to do better, and you remind me what real courage looks like.

You are our sunflower staying focused on the light that keeps it alive. You keep turning toward hope, even on the days that feel impossible.

You are our badass warrior. We love you to the moon and back and more than the stars in the sky. Always. 🌻

05/11/2025

🦓

31/10/2025

🩵

26/10/2025

The Elephant 🐘

I see your highlight reels of your life on social media- school highlights, career milestones, travel reels, family outings. And then there's the reality of my life, which some days feels like trying to conduct a chaotic orchestra while running a marathon in flip flops.
I have a career that requires a lot of my focus. I also have a daughter who is chronically ill with AVCS so rare that every doctor visit becomes a battle of legitimacy. I'm not just a mom, I'm her full-time medical researcher, doctor appointment coordinator, and chief legal counsel. The exhaustion isn't from the sleepless nights or the endless work demands. It’s from constantly having to fight the system, the one that dismisses a rare, complex illness as "psychosomatic" or "anxiety." It is a solitary war against skepticism, where I have to translate Seanna’s suffering into something digestible and believable for every new specialist . It feels like screaming through a pane of glass or on the heavy days even questioning my own sanity.

Our little family is in disarray. My wonderful, kind son is quietly craving the normalcy I can’t give him, a mom who isn't distracted by work demands or pulled away by another medical crisis. Nicho and I are operating as logistics partners rather than life partners.
I am trying to balance it all, desperately trying to keep the balls in the air, but every day I look in the mirror and I feel like I am failing.
The pressure is crushing. It sits in my chest, heavy and suffocating, and it will not move. That’s the elephant in the chest, the impossible weight of knowing that if I drop even one ball, Seanna’s health, my career, Kaden’s wellbeing, or my family’s stability could shatter.

This is not a cry for help. My shoulders can carry the load. It is just truth. Moms are just built diffently. For anyone else living in this space between strength and breaking, I see you. You are not weak, maybe you are just carrying too much. 💜🌻

26/10/2025

🌻💜

Podcast Episode · Neuroveda Podcast for Complex Health · 18/02/2025 · 1h 6m

11/10/2025

Seanna had 6 pain free hours and was able to tolerate sushi, chocolate cake and a toasted cheese before the pain returned 💜

09/10/2025

📢 📢

03/10/2025

Today was hard. Really hard.

I’m so tired of medical gaslighting. Tired of sitting in rooms where people with years of experience look at Seanna and decide because she does not fit in their textbook and little box, her pain isn’t real, or that it must be “psychosomatic.” As if their “supposed” experience cancels out her lived reality. As if she isn’t the one who wakes up every day fighting through this.

Yes it’s possible to have more than one diagnoses. Yes it is possible to have more than one Abdominal Vascular Compression Syndrome and no there is no genetic test to confirm hEDS.

We’ve been dragged through the wringer on this journey. Appointment after appointment, retelling the same story, being questioned, doubted, dismissed. Having to advocate again and again is exhausting. I am tired. Seanna is tired. My little family is tired. Sometimes it feels like we’re shouting into the wind.

But here’s the truth: Rare exists. Seanna knows her body better than anyone. She is the one living this, every single day. She is the expert, no matter how many specialists say otherwise. She is our unicorn with 2 horns.

Today the elephant sat on the chest again, but tomorrow is maybe another chance. Perhaps it will be a little lighter. Maybe someone will finally listen. Until then, we keep going. 🌻💜