✉️ An Update on My Health

Dear friends and family,

I am writing this because so many of you have asked how I am doing, and it has become too physically exhausting for me to explain the complexities of my health out loud right now. As many of you know, I had to stop my work as a gardener and arborist last year because my body simply could no longer support the physical labor. It has been incredibly hard to reconcile my old, independent self with the version of me today who needs significant help.

Right now, my body is facing a major, multi-system medical crisis. It is not "all in my head," and it cannot be fixed with diet, exercise, or positive thinking. To put it simply, my physical "hardware" is failing me in a few severe ways all at once:

* My Spine and Brain: I have been diagnosed with severe cervical spinal stenosis, craniocervical instability (meaning the ligaments holding my skull to my neck are too loose), and a thoracic syrinx (a fluid-filled cavity inside my spinal cord). This spinal cord compression is what caused my sudden neurological bowel and bladder failure earlier this year. I am currently undergoing a heavy gauntlet of testing at UW Medicine and Virginia Mason to prepare for potential neurosurgery to stabilize my spine.

* Advanced Internal Bleeding: Alongside my spine issues, I am dealing with advanced, deep infiltrating bowel endometriosis. The disease has likely burrowed completely through my intestinal wall, causing severe pelvic pain and internal rectal bleeding that cycles with my periods. I am actively working to get a specialized surgical team to remove this tissue, but it is a complex process.

* My Heart and Nervous System: I have a genetic connective tissue disorder (Ehlers-Danlos Syndrome) and a severe nervous system disorder called POTS, which causes me to pass out and triggers daily migraines. The sheer, overwhelming physical stress of all this pain and nerve compression actually caused my heart to physically change shape earlier this year—a serious cardiac event called Takotsubo cardiomyopathy (often called broken heart syndrome).

Because my spinal cord, heart, and intestines are all compromised at the same time, I only have about two functional hours of energy a day at best. The rest of my time must be spent resting in a quiet, dark room to manage the pain and migraines. I currently have in-home caregivers through Medicaid to help me survive day-to-day.

In the middle of this storm, my animals are my anchors. My four cats and four little goats are still right here with me—I am able to care for them with the help of my caregivers, and they bring me immense joy and comfort every single day. My three dogs are currently safe, happy, and well cared for by wonderful friends, but Clementine Corgi still visits and stays with me sometimes, which fills my heart.

How you can help right now:

* Financial Support & Fundraising: Because I have been unable to work since last year, I am under severe, catastrophic financial strain. I created this fundraiser to try to help alleviate that strain. Please see below for more details on the financial aspect.

* If local to the WA/OR area, support with transportation to and from medical appointments is always very appreciated. Help with advocacy is wonderful too. On good days, I love visitors at home, though I can’t do much beyond catching up and watching a show from bed.

* Boundaries: Please don't offer medical advice or lifestyle fixes. If you send a text, please know I love you, but I may not have the energy to reply.

Thank you for loving me, for supporting my animals, and for sticking by me while I navigate this storm.

With love,

Áine/Anja/Pony

💵 About the finances

My goal of $5k, when combined with the support that friends and family have been able to contribute, would help me survive for the next 3 months.

I’ve begun the process of applying for state benefits and been repeatedly told that I have a very high chance of being approved, probably within that time frame. If I can make it until then, I can keep my home and my animals.

If I can’t raise this money, I will likely need to rehome all my animals and part with my beloved Luoma, to move into some form of assisted living etc.

And life would go on and I would redirect all my drive towards finding the best possible outcomes for all these beings that I love with my whole soul. But for me right now, that represents giving up hope that I will get through this and rebuild some type of life here.

At times that hope has flickered, faded, almost gone out - but it has never died, and if you know me, you know that I’m pretty hard to keep down.

I still imagine a future where I develop the incredible natural beauty at Luoma into an accessible healing place, to be shared with people facing many kinds of disabilities and struggles.

I have some allies for this dream, relevant experience, and still a whole lot of fight. I don’t want to let it - or my animals, or my home - go just yet.

*

Here is a breakdown of where the money will go (rounded for ease):

💚 $1500 / 30% towards paying off residual medical bills from before my switch to Medicaid in March. Prior to that, I was buying insurance through the marketplace like most self-employed gardeners/arborists. I was hit hard by recent federal changes and went from paying $167/month for a good plan to $723/month for a worse one, at the same time that my health imploded.

Paying off these bills would stave off medical bankruptcy, which I have been struggling to avoid all year. I have sold what I could, I have spent dozens of hours on the phone while barely able to sit up: fighting with my old insurance, with financial assistance programs, with external medical contractors, etc. I have whittled the number down from the $50,000+ totals that originally arrived in my mailbox. But I have done as much as I can and still need help.

💚 $500 / 10% to cover medical transportation-related costs that Medicaid doesn’t cover. I can get assisted transportation for some visits, but need to rely on public transit or provide fuel money for visits to OHSU in Portland. OHSU is the region’s most comprehensive spine center for people with connective tissue disorders and may be the only one willing to operate on my special spine(tm).

💚 $500 / 10% towards ongoing medical expenses that Medicaid doesn’t yet cover. Things like compression garments, incontinence products, self-catheterization kits, mobility aids. In most cases I’m midway through the approval process. (So far Molina hasn’t said no to anything, except one very expensive antispasmodic medication. Shoutout Molina.)

But I need these things to exist, right now. So I am paying out of pocket for them, or going without and experiencing worse symptoms as a result.

💚 $1000 / 20% towards keeping my animals fed and healthy for the next three months. I have EBT for my own food, but it doesn’t cover hay, kibble, litter, or vet costs.

💚 $1500 / 30% towards remaining household bills that I must pay to keep my home (insurance, etc).

*

Bonus money raised here would go to “luxuries”, like a bathroom sink (mine broke, so I just wash my hands in the tub for now…) and fixing my car, which needs new brake lines.

If there is any particular category you’d like to help support, let me know and I’ll do my best to honor that. Thank you so much for reading and for support of ANY kind. Literally every cent matters to me: last week I cashed out my coin jar at the credit union to be able to afford cat food! But they have never known a hungry day so far.

And even if you can’t donate, your love helps me keep fighting. Nothing is more important than that.

With love and so much gratitude,

Áine