Help Sarah Recover & Rebuild After Stage III Lupus Nephritis

UPDATE: 4/17/25

Today marks one month since I was released from my 12-day hospital stay, and two weeks since I launched this fundraiser.

I’m honestly still blown away by the outpouring of kindness, encouragement, and support from everyone. It’s been incredibly uplifting to reconnect with so many of you — old friends, new friends, and people who just showed up with love.

Thank you, truly. <3

I want to keep being transparent and accountable with y’all — both about my condition, and how the money from this fundraiser will be used.

You can expect monthly updates from here on out!

I know that this goal is a huge ask, and I feel a deep responsibility to make sure every bit of this money is used thoughtfully and well. As of right now, I have not yet spent any of the donated funds. I am still waiting on the hospital to bill me and provide an itemized receipt.

Additionally, I have recently applied for SNAP and SSDI. Both programs have long wait times for acceptance, but if I get approved for either– I’m pledging to lower my fundraiser goal based on whatever assistance I’m able to get.

Health Update:

The past month has been a lot. It felt more like 6 months in one.

There’s been some good news, and some rough stuff too.

A couple weeks ago, I was hospitalized again and found out I have mild internal bleeding and pancreatitis. –It’s still unclear whether that’s a direct complication of my Lupus, or a side effect of the medications I’m on. (At this point, it could really be either.)

We’re also still waiting on several important test results — some of which were ordered over a month ago — to better understand what stage my Lupus is truly at.

As I shared before, my original kidney biopsy was “scant,” meaning they didn’t get enough tissue to fully map the extent of the damage.

So right now, the “Stage 3 Lupus Nephritis” label is more of a working diagnosis, and It’ll probably take another 3 to 6 months of labs and monitoring to figure out exactly what we’re dealing with.

Some Good News!:

I’ve had some wins this month:

My medications are finally starting to take hold, and about 80% of my electrolyte levels have stabilized!

This has allowed my care team to start focusing more directly on treating and assessing the damage to my kidneys, and investigating whether Lupus has affected any of my other organs too.

It’s a long road ahead, but for the first time in a while, I feel like I have some answers and direction in all of this.

On a Personal Note:

I do feel obligated to remind y'all just how vastly different life is for me now, and how suddenly everything changed.

In just a few weeks, I went from living independently, working, and moving through my days normally — to feeling like a literal shadow of myself.

I’m not saying that to be dramatic. I just think it’s important to be real about what I'm living through and experiencing, without turning my story into "trauma porn."

I know many people with autoimmune diseases feel this same way — we are fighting something invisible.

If you see me on a good day, you might not think anything is wrong. I have even had a few people comment that “I don’t look sick.” That-- unfortunately, is the exact nature of this demon I am dealing with.

What people don’t see is that on my best days right now, I can only walk about half a mile before I get winded. I can’t lift more than 25 lb comfortably. I get random bouts of nausea and lightheadedness, and I’ve started getting muscle seizures and immobilizing cramps in my legs. I could go on.

These symptoms have forced me to very carefully ration my energy — even simple things like doing laundry, meal-prepping, or just leaving the house now require real planning and recovery time. My mother has had to become a pretty much on-call caretaker for me, because of how suddenly and randomly things can (and have) flared.

My state requires supervision now, something I never imagined I'd have to say. But this fact has also reminded me how crucial community truly is—which is why your support matters now more than ever.

Thank you again — every share, every donation, every message of support truly does make a difference. Y’all have helped me remember that I'm not facing it alone — and I can’t fully explain how much that has meant to me.

All I’m asking now is that you keep sharing this fundraiser, keep amplifying my story, and help me reach the people who might be able to lend a hand.

Every share truly helps — more than you know.

With so much love and gratitude,

— SF

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Help Sarah Recover & Rebuild After Stage III Lupus Nephritis Diagnosis

To the kind strangers who may be reading:

If we haven’t met yet — I’d like to introduce myself.

My name is Sarah, but my friends just call me S.

I’m 27 years old, and I’ve lived a few lives already.

I’ve worked as a performer, a music educator, a zookeeper, a knifemaker, (and many more) — I have lived and worked in multiple states, and I’ve always followed my curiosity.

Despite my many hats over time, I have always been an aspiring chef and have found my purpose in feeding people and being a servant to my community.

For the past decade, I’ve poured myself into restaurant kitchens, mutual aid organizing, and whatever spaces needed steady hands and open-hearted effort.

Friends who know me well might say I have a hard time slowing down. Some lovingly call it workaholism. I don’t always know how to do things halfway — I tend to show up fully, even when it costs me more than I realize.

To my friends and family:

I Love you!

I know it’s been a long time, and I’m sorry to have kept folks in the dark this long, but this is big– and It’s honestly taken me a full month since my hospitalization to feel okay doing this for myself. To learn how to say some of this out loud. To get words on the page and hit publish without feeling so conflicted about what this is.

This isn’t the first time I’ve had to ask for help, and unfortunately, it’s not my first close call. But this time is different. Being told I’ll live with this condition for the rest of my life has completely changed how I think about the future.

I’ve never been great at keeping in touch or posting updates, so I’ll do my best to keep this clear and straightforward — even though the past six months have felt completely surreal…

The short version:

I lost my home, my livelihood and community in Asheville, NC due to Hurricane Helene at the end of 2024.

On March 5th, 2025, I was hospitalized with life-threatening blood pressure and electrolyte levels.

After a 12-day stay in the hospital, I was finally diagnosed with Stage III Lupus Nephritis, a rare and chronic autoimmune kidney condition that has a risk of advancing.

I will not be able to work for at least 12 months, and I am told remission is not likely at this stage of the disease.

My Lupus could flare and attack my body at any time, regardless of how stabilized I am, creating a major need for a financial cushion that I do not currently have.

I need help covering medical bills, specialists and support care not covered by my limited insurance, and basic cost of living while I recover and re-learn to live with new and very strict monitoring + lifestyle restrictions.

Because of the lifelong nature of this condition, I won’t be able to return to the physically intense kitchen work I’ve done for over a decade. I have to start over.

My Story:

At the end of 2024, I lost everything I’d built in Asheville over nearly four years — my apartment, my livelihood, and my sense of home after Hurricane Helene devastated the region. When storm related damage claimed my apartment, I only had a week to pack and go. I sold or donated nearly everything I owned, and moved back in with family across state lines. This was already a massive change for me, and I had no idea how much harder it was about to get.

I spent the first three months of 2025 continuing to work and organize mutual aid remotely in Asheville, while simultaneously getting myself settled back in Saint Augustine, FL– I was planning on settling into a regular paying job here in FL while I saved up to get back to my community. My original goal was to be back in NC in 6 months.

One month ago today– on March 5th 2025, I was admitted to the hospital with a blood pressure of 192/137 and a critically low potassium level of 2.2 mmol/L — just 0.2 away from triggering heart failure.

After 12 days in the hospital, and being told by my specialists that I had “literally exhausted the facility of available tests”-- I was diagnosed with Stage III Lupus Nephritis (LN). An autoimmune disease in which my body is constantly attacking my kidneys.

The renal biopsy that provided my diagnosis was not entirely successful. Only one of five samples of my glomeruli were collected, meaning that my Nephrologist was unable to determine the true amount of damage and fibrosis of my kidneys.

This procedure was invasive, and due to my current poor organ function, it is unclear when I’ll be able to try again and learn exactly how far the disease has progressed; how long Lupus has been hiding in my body; and whether the prognosis is more serious than we know now.

What we’ve determined is that the damage to my kidneys is at least Stage 3 of 5. This tells me it’s serious, chronic, and not going away anytime soon.

My doctors say it will take at least two full years of constant treatment and close monitoring before we even know if remission is possible.

Right now, my only goal is only stabilization.

–A hard pill to swallow, but something I do feel the need to say.

Might as well since I’m laying it all out here.

It’s honestly still hard to fathom how much every single facet of my life has changed, and just how quickly my health deteriorated.

I don’t want to tug on heartstrings or get too deep into the specifics of my daily symptoms and pain management, but I will say:

--it ain't pretty.

The pain and discomfort are a constant.

Lupus is a complex autoimmune disease, and it manifests differently for everyone. Lupus Nephritis, the version I’m battling, is unfortunately even rarer—affecting only about 1.5 million people worldwide.

Every day, I have to track my weight, total fluid intake and output, blood pressure 4 times a day, and manage a wide range of painful side effects from the intensive medication regimen I’m now on.

I take multiple drugs several times a day to keep my condition stable—including high-dose steroids, immunosuppressants like mycophenolate mofetil, anti-malarials, blood pressure medications, diuretics, and additional treatments to manage anemia, inflammation, and severe electrolyte imbalances.

These medications don’t just interact with my body—they interact with each other, and often in conflicting ways.

This process has been frustrating. And it is still so early. I have had to accept that the road ahead is going to be constant trial-and-error, and many of the drugs come with side effects that will mirror or intensify my Lupus.

Other than simply waiting to see how my kidneys respond to these drugs, (as long as 12 weeks to even see a response in some cases) the only other things in my control are doing very limited exercise and controlling my diet.

As a chef, this shift has been profound. To support my recovery, it is essential that I follow an extremely strict regimen of unprocessed, kidney-safe foods—and I can no longer consume salt at all. It literally poisons me.

Even 1/8 teaspoon of kosher salt in a 24 hour period—just 530mg, or 23% of the daily limit for an average adult—has nearly landed me in the hospital for a third time in the past month.

Navigating this has forced me to completely reimagine how I cook, how I nourish myself, and how I stay connected to the craft I have built my entire life around.

The hardest thing for me has been teaching myself to slow down to prevent the sheer exhaustion from this disease that progressed so rapidly over the last 90 days.

My body has been through hell and back.

It is confusing to describe how I feel on most days. Having the drive and desire to be active, thoughts and feelings and ideas as I normally would, but not physically being able to take action. OR pushing myself too hard when I’ve convinced myself I do have the energy– and completely crashing later.

In hindsight, there were signs. There was a slough of other effects my body had been going through in the months before my hospitalization that one of my ER docs aptly called a “constellation of symptoms”. Things that were happening to me either so infrequently OR had been happening for so long that my solution was to work through it, or take a painkiller, or just take a day off to deal with it, and it will go away, right?

If you’re reading this far, whoever you are– I hope that you will take care to check in with yourself and your own body soon. It’s so easy to disconnect, especially for those of us in an industry that is so physically and mentally demanding.

So many of us in the service industry instinctively push through pain, and sickness, and emotion, because we truly love what we do without bounds. We literally want to be of service.

The most common trait / denominator of every coworker, in every restaurant I’ve worked in the last decade, is dedication and pride in what we are creating together.

The people who choose to work in this industry care about the craft, the theater of it all, and providing beautiful, memorable life experiences for others.

There is nothing like having someone tell you the food you served was the best meal they’ve ever had. Something they say they’ll never forget.

That’s why this experience has been so devastating—but also so clarifying. I miss my work and my projects. I dearly miss my colleagues, and I miss giving back to my community.

Through my work, I’ve been proud to fight and advocate for the people who make this industry what it is. I want nothing more than to return to my career, to reclaim my health, and to keep doing the work of helping others.

Right now, I just need the time—and the support—to heal.

Why I’m Fundraising:

This is the part where I have to explain what’s going on financially.

Like the rest of this manifesto, it’s complicated. It’s embarrassing.

But it’s necessary.

I’m fundraising because continuing to manage this disease—and hold onto my independence—is no longer something I can do alone.

After receiving Federal Disaster Unemployment in the aftermath of Hurricane Helene, I was narrowly able to qualify for a low-income tier of Marketplace insurance. This plan is the only reason I’ve been able to access life-sustaining medications and specialist care; But it comes with a catch: under this plan, even a small change in income—even applying for Social Security Disability—could jeopardize my eligibility and disqualify me from coverage entirely.

I’ve been strongly advised not to work for at least a year—not just for health reasons, but to avoid disrupting the care that’s keeping me here.

I’m stuck in a bureaucratic holding pattern-- where getting better requires care, but accessing care requires staying technically unemployable.

While my insurance did cover the vast majority of what was labeled a $74,454.02 hospital stay, I still have an outstanding deductible to pay—and I still haven’t received the final bill from the hospital itself. So far, I’ve only received a “Health Statement” from Florida Blue clearly labeled “THIS IS NOT A BILL.”

There is a real possibility that hidden charges, facility fees, or uncovered services from the hospital I was treated at may still be added to my total. That uncertainty is heavy.

And while I’m grateful to have some coverage, it’s limited. It doesn’t include the critical services and tools my care team is highly recommending in order to continue stabilizing my condition and maintain a basic quality of life.

Things like:

I’m currently living with my family, who I am endlessly grateful for.

They are doing everything they can to support me—but they have their own lives and responsibilities too.

Helping me also means helping them.

I’m asking for $120,000 to support myself over the next 2 years.

This includes:

I want to be blunt here and reiterate, this isn’t really about recovery. The goal is stabilization.—keeping my kidneys functioning, managing my symptoms, and staying out of the hospital.

The possibility of a sudden domino effect on my system is very real.

Your support—whether financial, emotional, or just by sharing this page—gives me the chance to breathe. To rest. To help me in being able to focus on being present without fear about the next bill, the next flare, or the next big decision.

How the Funds Will Be Used:

Medical Care & Therapies

$60,000

Ongoing labs, out-of-pocket prescriptions, copays on follow-ups with nephrology, rheumatology, GI, and neurology; physical therapy, renal dietician, mental health support, mobility aids (cane, compression wraps), and continued care for further complications as I continue to build my care team and investigate the disease further. Many of these services are only partially covered or not covered at all by my current plan.

Kidney-Safe Food & Nutrition

$15,000

A strict, 100% unprocessed, salt-free diet is medically necessary—but not medically subsidized. These funds support groceries, essential nutrients and supplements for kidney and heart health.

Living Expenses & Family Support

$20,000

Basic living needs (housing, hygiene, utilities) while I remain unable to work. This also includes direct support for my family, who are helping care for me full-time.

Transportation & Access

$6,000

Transportation is not covered by my plan, yet I rely on it regularly to access labs, pharmacies, appointments, and basic services.

Emergency, Hospital & Hidden Fees

$12,000

I’m still awaiting the final bill from my 12-day hospital stay, with only a vague “health statement” so far, that clearly states: THIS IS NOT A BILL. These funds also prepare for new ER visits, diagnostic scans, facility charges, or drug changes that could hit suddenly.

Long-Term Disability Prep & Safety Net

$7,000

A flexible cushion to support delayed SSDI approval, build toward independent living, support in a career transition if I am able to work again, and on the other hand, to fund future care transitions if my condition worsens. This safety net helps prevent another medical or financial emergency from upending everything again.

What Comes Next:

I have to say– I know all of this seems incredibly dramatic.

And it is.

The notion of putting everything out there and asking for this much, from so many has made me sick to my stomach.

But this is the way that I feel:

In so many ways, I feel lucky to have this time to rest, and heal, and imagine what my new life could look like. It is truly a blessing for my job to be able to simply focus on my health.

To process what this condition will mean for my life and my future.

To finally process the hurricane.

--But I am simultaneously so uncertain. I know that I can’t ever return to the kitchen in the way that I wanted. Those of y’all who know me well know I love to work, and work hard.

I am a passionate person. I enjoy high pressure and intensity.

On the stage, In the restaurant; In the life I deserve to return to.

Things are bleak right now, but I do believe there’s a path ahead where I can still cook, teach, create, and care for people — just differently, and not for a rather long time. But I will get there.

If you’ve read this far, thank you.

Whether or not you’re able to donate, I appreciate your time and support, and energy.

The most impactful thing you can do is share this link, as many times and to as many places as you feel comfortable.

This is going to be a long road for me, and for my family.

Please know that I am an open book for any of you who have questions or words for me at this time, no matter who you are, or where we might have left off. Doesn’t matter how long.

Gofundme prevents me from adding an email here so please use

Instagram DM: @sjfiori

Know that I am safe, and I am at peace with this process.

With endless love and gratitude,

-Sarah Fiori