17 Years with axSpA and Choosing a Different Kind of Love

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Two Decades of Writing. Sharing Helps Me Out

17 Years with axSpA and Choosing a Different Kind of Love

This month marks 17 years with axSpA. That’s seventeen years of surviving.

It’s seventeen years of showing up while my body burned down.

Seventeen years keeping everyone else’s world together while my own health went to hell.

I’m honoring seventeen years of adapting, surviving, and pushing through while acknowledging that this kind of survival would break anyone.

When you couple it with what I did this week for health and financial assistance, it becomes radical self love and self compassion in a fiery ball of Fire Horse energy in 2026.

I worked as long as I could and held a company together through sheer force of will, I volunteered and I fought for treatments and legal recognition for myself and for others. I navigated foreign medical systems alone and funded all my treatments MYSELF. Then I fundraised for a power wheelchair with art sales to help me through April 2024 to December 2025. My power wheelchair helped me do things I didn’t think I could accomplish.

Every day, I kept showing up.

But long-term survival mode has a cost.

Over time, diagnoses layered in ways I did not fully understand until recently:

AxSpA
Fibromyalgia
ME/CFS
Psoriatic arthritis
Centralized pain disorder
Recurrent shingles and infections.
Cardiac changes currently being reclassified
Antiphospholipid Syndrome (APS)
Sjögren’s disease
POTS
MCAS

Since arriving in Canada all of the above are confirmed plus this week I confirmed…

Severe B12 deficiency
Severe iron deficiency – I’m staring infusions asap.
hEDS

No wonder I am so wrecked.

Seeing everything together this week has been sobering.

Chronic inflammatory disease combined with prolonged stress reshaped my nervous system and my body. Surviving alone was no longer sustainable. My home life became unstable with constant attempts to move me further from care, even to another country. Survival became impossible.

The truth was clear: I could not survive another move in Taiwan.

Pulling the eject button was necessary. I was not moving further from my hospital, and I sure as hell wasn’t moving to Ireland.

ENOUGH.

I already have four moves in three years behind me.

For the first time in 23 years, I put myself and my needs first. This year, I made the hardest decision of my life. I chose safety.

After 17 years with AxSpA with people who continuously minimized the severity of my illness, I’m choosing myself.

Even small things — like a library card that was gifted to me years ago to use on hard rest days — can become tools for control once you assert your boundaries. That card, like my Taiwan phone number, was revoked in a petty attempt to erase me. Timing? Almost poetic. Impact. Laughably pathetic.

Every reaction that has happened leading up to my departure and after departure has been anticipated.

It reiterated, once again, that I’m done sacrificing my health for someone else’s comfort.

Choosing myself and care was essential.

I chose to stop pretending I was fine. I asked for help.

Love and assistance have shown up each and every day in Canada. I feel loved and supported in ways I haven’t felt in years. Thank you to everyone who has been here.

Meanwhile, I am grieving my old body and the life I thought I would have.

I am grieving my life in Taiwan.

The grief for my life is mingled with the grief of losing a family.

But I am grateful to still be here. And I’m grateful I had the strength to choose me.

This Valentine’s Day, I’m redefining love.

Love is safety. It is nourishment. Love is being believed.

Love is practical help when you cannot stand or move on your own two feet.

As I realized my world in Taiwan was ending, I looked it straight in the face and said these words: “I am loved and people care about me. I will no longer put anyone else above my own safety and well-being.”

The most radical thing I’ve done in 17 years is choose myself.

萬馬奔騰 Wàn mǎ bēn téng – Year of the Fire Horse

I am Ten Thousand Horses Galloping into 2026 with the energy and momentum of the Fire Horse. I am unstoppable momentum and a woman moving forward with my life. Nothing is going to get in my way.

Have you lived in survival mode for a long time? If you have, feel free to share and just know that I see you. You’ve got this.

I still don’t have access to my medications or any kind of financial assistance.

I’ve been in Canada for six weeks. While doctors have confirmed I’m in a life-threatening situation, I still don’t know how I’ll pay for my medications or how I’m going to live beyond how my parents are helping me.

I need your help until I can find some solid ground and start moving forward on my own again. If you can help in any way, through donating or sharing, it would mean the world to me.

Chronically yours,
Carrie, 微笑天使 Smiling Angel

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