From Surgery to Sunlight: Our First Weeks of Recovery

On August 26, 2025, Shaina went into the OR for Chiari I decompression and right jugular decompression. It was the surgery we’d been preparing for all year — the hope we’d been clinging to after years of pain, nausea, ER visits, and unanswered questions.

The surgery itself was complex. Dr. Bolognese reduced her crowded cerebellar tonsils (one stacked on top of the other in a skull that was simply too small for everything it had to hold). That uncovered an area at the back of her throat and tongue that had never received proper blood flow before — her brain and body are still adjusting to this “new normal.” He also worked to decompress the right jugular vein, and plastics closed carefully to give her the best chance at healing with hEDS.

It was successful — but that was only the beginning.

PACU Limbo & Emotional Toll

Complications started almost immediately: a rare post-op brain swelling “flare” required two CT scans, though thankfully it settled down. What didn’t settle down was her hospital status. Because of an ICU “traffic jam” and the need for a special bed, Shaina stayed in the PACU (Post-Anesthesia Care Unit) for three long days.

That separation was brutal. Visits were short, and the uncertainty weighed on both of us. Shaina recorded her own video during that time: her voice raw, her frustration boiling over. She said she wasn’t okay — not because of pain, but because of the emotional toll of being left in limbo. She shared how broken our system has become: overcrowded hospitals, patients waiting in hallways or PACUs, and the fallout falling hardest on those who need care the most.

Advocacy Wins & A Room of Our Own

By August 28, we’d had enough. I sent an email to Dr. B and his office. Within hours he was at Shaina’s bedside, then on the phone with me, and suddenly things started moving. Before I could even pack our bags, Shaina was in her own room.

That first night together felt like oxygen. We watched Singin’ in the Rain (surprised to remember Rita Moreno’s cameo), and I cracked an Exorcist joke about her required hourly head turns. She laughed. After everything, hearing her laugh again was medicine.

Early Recovery Struggles

The next days were about building strength in inches:

• Swallowing & Speech: Hoarseness and phlegm were first blamed on nerve damage, but ENT later confirmed her vocal cords are weak, not paralyzed. One cord in particular may take up to six months to recover. Her tongue also remains weak — veering left when she sticks it out, tiring quickly through the day, and making swallowing difficult. Pills are still hard. She tolerates dry, “flattened” foods best. Wet textures like pudding or applesauce are a no-go. Speech therapy will continue outpatient.

• Blood Pressure: Shaina’s blood pressure crashed repeatedly at night, sometimes as low as 75/43 outside the hospital. The panic alarms and interventions became a nightly routine. Our working theory now is that some of her pre-op prescriptions may no longer be necessary post-surgery — which could be a silver lining. For now, she manages dips with midodrine, sodium chloride, and extra fluids, while we wait for more guidance from her doctors.

• Physical Therapy: To be cleared for discharge, Shaina had to prove she could walk stairs (our Airbnb has them). She passed that with flying colors, walking 250+ feet in the process. Her “reward” was an insurance-approved walker.

• Masking & Safety: We had to advocate hard for infection control. Our homemade signs were taken down the first night, and staff debated whether she even counted as immunocompromised (!). After pushing with the charge nurse, hospital-issued signs went up and compliance improved. The trade-off was a few curt attitudes, but we’ll take health over popularity any day.

Discharge: Fresh Air & Ocean Air

On September 4, after 11 long days, Shaina was finally discharged. She hadn’t felt fresh air or sun on her face in nearly two weeks.

So what did we do first? We grabbed her prescriptions, picked up pizza (on the nurses’ recommendation), and drove straight to Ocean Park Beach. We kicked off our shoes, put our feet in the sand, felt the sunlight, and yelled at the ocean. That’s what freedom felt like.

Now we’re staying at an Airbnb near the hospital for three weeks. It’s expensive, but it has amenities we need and keeps us close in case of setbacks.

Where We Are Now (Sept 15)

Recovery is slow, uneven, and ongoing:

• Tongue still weak, with saliva pooling on the left side.

• Swallowing still challenging, though some progress with certain foods.

• Speech remains impaired, but therapy is lined up.

• Migraines have increased — at least three in the past 10 days. Forward leaning brings forehead pressure; lying too flat pushes it to the back of her head.

• Chest pain in the mornings when waking or sitting up.

• Blood pressure instability remains the biggest hurdle — our #1 question for her doctors right now.

But there is progress too. The nausea that plagued her for months is much better. She’s walking more each day. Her voice, though still hoarse, is stronger than it was in those first few days.

What’s Next

• Getting the stitches removed!

• Speech Therapy

• Ongoing ENT follow-up.

• Monitoring blood pressure closely, awaiting guidance from her care team.

• Building strength through PT and daily walks.

• Continuing advocacy — because if we’ve learned anything, it’s that the fight for proper care doesn’t end once you leave the OR.

Thank You

Through every scare, every sleepless night, every laugh we managed to find, we’ve felt carried by you. Your donations, your prayers, your messages — they’ve been the scaffolding that’s held us upright.

We’re out of the hospital. We’re breathing ocean air. We’re facing new challenges. But for the first time in a long time, we’re focused not just on surviving — but on healing.

💜 Thank you for walking this road with us.

#SaveOurShaina #ChiariAwarenessMonth #ChiariMalformation #hEDS #MEcfs #DisabilityJustice #MyWifesFightIsMyFight #StillHereStillFighting

Overdue Update (and Still Incomplete)

So, here we are — post-procedure, pre-breakdown (kidding… mostly), and finally catching our breath after what feels like a year packed into a month.

Let’s just say: since Shaina’s cranial procedure on April 29, it’s been a lot. A lot of medical buildings. A lot of less than desirable parking situations. A lot of restaurants we don't have in New Orleans. A lot of feelings.

We’re going to write a full update on the actual medical stuff once we’ve had time to properly sit down, breathe, and decode the hieroglyphics that are post-op notes and radiology reports. But in the meantime, here’s the unofficial, behind-the-scenes, real-life recap of what’s been going on since the procedure — or as I like to call it, Shaina and David’s Slightly Unhinged East Coast Advocacy Tour.

Leaving Long Island (aka: “You Can Check Out, But You Can’t Leave”)

After the procedure, we relocated from Dix Hills to the Bronx. This involved repacking all of our stuff — and by “stuff” I mean the equivalent of a moderately stocked Walgreens. Medical supplies, travel pillows, winter clothes (for those colder nights in NY), and enough snacks to feed an entire MEAction rally. We packed it all. Slowly - more slowly than we expected. Carefully - but never careful enough. With aching backs and zero chill.

Shaina, still recovering and full of both new sensations and staples, said goodbye to our Airbnb with the same energy as a queen abdicating her throne. We left behind new friends and a pair of earrings.

I got a chance to catch up with colleagues from EGPS and clients all throughout New York City. It was good to see people that we'd only seen over Zoom. Plus, we got a chance to see some family we hadn't seen in a looooong time. Like 20 years.

We Protested. And Wobbled. And Protested Some More.

Then came Washington, DC.

We made it to the #MillionsMissing protest at Upper Senate Park, where Shaina gave a speech that had people crying, cheering, and generally wondering how someone could be that powerful and hilarious while recovering from an experimental cranial procedure.

There was laughter (see: “Wobble baby, wobble baby…”), rage (see: “Medicaid cuts”), and a few accessibility fails (see: “a million stairs and one lonely ramp”). But there was also joy. Community. Purpose. And the deep satisfaction of saying something true in public. We did that. And we’ll keep doing that.

We Did the Fun Stuff, Too.

Somewhere in the middle of all the big feelings and big moments, we squeezed in a few sweet ones.

We got a chance to visit with more friends and family on the way back. Shaina got to pet some horses, dogs, and cats in North Carolina! We attended the Malcolm X festival in Atlanta where we had some good lemonade and listened to cool jams. On the Florida Coast, we got to the beach for one day - complete with a half dune buggy/half wheelchair contraption.

And Now? We’re Taking a Beat.

We’ve been running on adrenaline, borrowed energy, and the some slightly melted Easter candy. Now, it’s time to rest. Recover. Recharge. And, ideally, stop living out of two sets of luggage and a slew of duffel bags.

We’ll have a more thorough medical update soon — promise. But until then, thank you for walking with us, donating, sharing, DMing, commenting, laughing, crying, and sticking around for all of this. We love you for it.

Now if you’ll excuse me, I need to unpack, take a nap, and discover just how much of a unicorn Shaina is amongst the zebras we thought she once was.

More soon. Stay tuned.

—David

Procedure Eve Eve

We're in New York. We made it. After leaving late on Wednesday - when we tried to leave on Tuesday - I'm just glad that we actually made it up here. It's late - nearly 2 AM EST and we have an appointment first thing in the morning. They said that they wanted Shaina at her worst on Tuesday. No problem there. 😂

So happy that we got a chance to visit with family in Atlanta, Charlotte and Long Island. Shaina got a chance to share her story and connect with family she hasn't seen in a very long time; for way too long. Add in that we had a #MEAction media training session today (ahead of May 12th’s #MillionsMissing) as we drove from Virginia to NYC, and every day has been a full one.

The training session could have been better. We spent too much time talking about storytelling and not enough letting us practice our own storytelling. Plus, there was too much cognitive zapping material that wasn't ideal for the target audience - people with ME/cfs. If you caught the comic book style primer on Shaina's issues, you saw how ME/cfs can make even the simplest tasks much more draining than usual. That includes mental and emotional tasks too - not just physical ones. Today was a prime example of that.

Considering how much Shaina has been been through over the last few days, it's amazing that she's as functional as she is. I keep waiting for the second shoe to drop but it hasn't happened yet. Fingers crossed that it never does.

I'm dozing off as I write this so I'm going to call it and fill you in tomorrow. Full day of medical appointments tomorrow - including a last minute cardiac clearance that would have been much better if we could have done it in New Orleans but we didn't get notified in time. Ah well, bring on hell day. Let's see if we can get a slice of heaven in before we go to bed tomorrow night.

P.S. Before we go, we've been wearing beacoup matching couple shirts. It started with a “Happily Ever After Couples Tour” shirt I got us for Easter this year. So along that theme, here are a couple from the past few days.

The Villains We're Battling: A Comic Book Primer on Shaina’s Medical Conditions

Every superhero has their origin story — and every great story has a villain (or, in this case, a whole sinister syndicate). Shaina’s journey isn’t powered by gamma rays or alien tech, but her resilience? That’s straight-up legendary.

This post is your front-row seat to understanding the complex, often invisible chronic illnesses she lives with — told through the lens of comic book mayhem. Because when the science gets dense, a good metaphor can save the day.

Let’s meet the lineup:

🦸‍♀️ ME/cfs: The Energy Vampire

Full name: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Read more from the CDC | MEAction explainer

ME/cfs is a severe, neuroimmune disease that causes extreme fatigue, brain fog, pain, and something called post-exertional malaise (PEM) — a full-body crash after even small amounts of activity.

🦹‍♂️ Comic Book Analogy: Think Parasite from Superman lore — draining energy from anything it touches. That’s ME/cfs. Except the parasite is inside your body, feeding off your stamina and shutting things down every time you push too hard. A trip to the kitchen? Might cost a full day in recovery.

🧠 CCI: The Loose Screw in the Neck

Full name: Craniocervical Instability
Learn more from the Chiari & Syringomyelia Foundation

CCI is a condition where the ligaments that hold the skull and spine together become too lax. It causes the brainstem to get compressed — and spoiler: the brainstem controls a LOT.

🦹‍♂️ Comic Book Analogy: Imagine Batman’s grappling hook suddenly stretching too far, letting him slam into the wall instead of swinging to safety. That’s what CCI does to the head and spine connection — turning stability into danger with every movement.

🧬 hEDS: The Stretchy Glue That Won’t Hold

Full name: Hypermobile Ehlers-Danlos Syndrome
Learn more from The Ehlers-Danlos Society

hEDS is a connective tissue disorder. In short: the collagen that holds everything together — joints, organs, skin — is too stretchy and fragile. Cue dislocations, pain, fatigue, and frequent injuries.

🦹‍♀️ Comic Book Analogy: Think Plastic Man or Elongated Man — but with zero control over the stretching, and all the pain instead of the powers. The joints bend too far, the body pays the price, and every stair or sneeze can trigger a misfire.

⚡ POTS: The Tilt-A-Whirl Heart Rate

Full name: Postural Orthostatic Tachycardia Syndrome (POTS)

Learn more from Dysautonomia International

POTS is a form of dysautonomia, meaning the body can’t regulate basic functions like heart rate, blood pressure, or temperature. When Shaina stands up, her heart races like she’s mid-marathon — even if she’s just reaching for a glass of water.

🦹‍♂️ Comic Book Analogy: Think The Flash, but with zero superpowers and all the side effects. The heart’s sprinting, the body’s dizzy, and the blood forgot how to circulate.

🌪️ MCAS: The Unpredictable Allergy Storm

Full name: Mast Cell Activation Syndrome (MCAS)

Read more from the Mast Cell Disease Society

MCAS is what happens when the body’s allergy cells (mast cells) go rogue — releasing chemicals like histamine without a clear trigger. One minute Shaina’s fine, the next minute: rashes, swelling, nausea, or even anaphylaxis.

🦹‍♀️ Comic Book Analogy: Like Harley Quinn with a flamethrower — unpredictable, chaotic, and way too sensitive to everyday stuff like perfume, food, or stress.

💪 The Superpower? Still Showing Up

Every one of these conditions (and there could be more! Did someone say sequel?!) is hard to diagnose, often misunderstood, and incredibly complex to live with. But Shaina is facing them like a true superhero — not with capes or gadgets, but with grit, humor, and a squad of real ones backing her up.

Want to help?
🔗 Visit our site
💖 Support Shaina’s comeback

Every like, share, and donation is another brick in the path to healing. And trust us — this origin story? It’s building toward something legendary.

💻 New Site, New Video, Same Old Us (But Louder)

Hey friends, fam, fellow spoonies, and curious internet wanderers —

We’ve been busy. Like, “David built a whole website, Shaina worked her ass off to the extreme, and we recorded a trailer without collapsing” busy. So here’s a little update on everything we’ve been cooking up over here at Team Shaina Comeback HQ.

🚨 We officially launched davidandshaina.com!

This site is our new home on the web — part blog, part resource hub, part digital hug. It’s where we’ll be sharing updates on Shaina’s health, our advocacy work, and the behind-the-scenes chaos (yes, spreadsheets are involved) that is chronic illness life.

🎥 We made a video!

Okay, not just a video — a trailer. A mini-doc. A love letter and a truth bomb in one.
In it, we introduce ourselves, explain ME/cfs, EDS, and CCI, and talk about what this upcoming surgery could mean for Shaina’s life. Spoiler: a lot.

Watch it here or on our Support page — and maybe keep a tissue nearby.

We have another (40 minute!) video version that explains everything in more detail (Shaina loves detail!) coming soon!

💜 GoFundMe is live — and we need your help

The medical system is... well, let’s just say it’s not built for people like Shaina. We’ve been paying out of pocket for years, and this next round of surgery, travel, housing, and recovery support is going to cost real money.

If you’ve ever wanted to help but weren’t sure how — this is it. Every donation gets us closer to stability, to healing, and to a version of life where Shaina isn’t stuck in bed, dealing with the fallout of pushing past her limits.

👉 www.gofundme.com/save-our-shaina

📲 Follow us on Instagram @david_and_shaina

We’re posting updates, behind-the-scenes clips, and the occasional ridiculous reel. Shaina’s still funny even on her worst days — and David’s still accidentally turning every tech fail into a comedy bit.
Also follow us individually at @creolechick (Shaina) and @david.a.burks (David).

So It Begins

This has been a long time coming. I would say that I’m surprised that it took so long for us to make this happen - especially since it’s been percolating in our heads for years. But I also know that I’m not very good at asking for help. Ask my parents. Even now, I feel this responsibility to provide content or value to anyone supporting us when no one has asked for it. Sure, some people may want it or even need it. But those that know Shaina know that she may be the person MOST deserving of this help.

Shaina is the type of person that lights up any room that she enters - even virtually. Her infectious smile and confident stride (even in a wheelchair) turns heads. I could tell you how beautiful she is but I’ll let the pictures speak for themselves and I can’t really take credit for that, even though I’ve tried. People gravitate to her. Even if she tries to find some corner at a party to just chill out in, people find their way to her and tell her everything. I mean everything! They must know how trustworthy and understanding she is. I know she makes me feel like the only person in the room sometimes and I know she does that for other people too. Babies smile at her at the grocery stores and little kids attach themselves to her. She doesn’t ask for any of it but we have come to understand why. I don’t know if it’s the law of attraction or any of that but we know that where Shaina goes a crowd will follow. Just watch what happens when we pull into a business or restaurant.

A quick selfie at our friend’s Mardi Gras party before Shaina attracted a crowd

For her friends, Shaina has offered professional level advice and health guidance for years. Even when we have sought and found specialists to help our her health issues, many times those doctors tell Shaina that she should get into the health coaching business. So she has! Why deny people the opportunity to access a good thing simply because we don’t like to “sell ourselves.” That was a hard lesson to learn and the reason that we’ve created the platform to share our story and health journey.

It also explains why we haven’t asked for help from friends, family, and colleagues over the years. While we have become less shy and private about the medical struggles that Shaina has gone through, we didn’t let on how much of a financial stress the search for answers have been. We’re grateful to Shaina’s mom and stepfather for all of her support over the years and to my parents for their support as well. Most other people don’t really know or never bothered to ask more questions about what was happening. Those that did, we can count on - let’s say - two hands. Those relationships have meant the world to us and we will be honoring them in our own special way.

So, I think that’s all I’ll say for now. I need to make us dinner and do our final preparations for a busy week of parades and charity events. I’m sure you’ll see the pics.