My Body Chose Chaos

15/07/2026

This is a little outside the usual medical chaos I share here, but I wanted to use this page for something that genuinely matters to me.

I helped my friend Alex put together this GoFundMe. He has been through a brutal couple of years—losing his mom, then his job, and now the home he thought he would be able to stay in. He has to be out by August 31, and we’re trying to help him get an older, livable camper or small RV so he and his two cat daughters have somewhere safe to land while he finds work and starts rebuilding.

I know everybody is stretched thin, so there is truly no pressure to donate. But please click and read his story. Even sharing it or passing along a legitimate camper, long-term lot, towing, moving, or job lead near Hartselle could make a real difference.

I wouldn’t be posting this here if I didn’t believe helping him get that first bit of stability could change everything for him.

I’m putting this fundraiser together for my friend Ale… amber gregory needs your support for Help Alex Rebuild After Losing His Mom, His Home and His Job

11/05/2026

Update as of May 10, 2026:

I haven’t been quiet because nothing was happening.

I’ve been quiet because a lot has been happening, and every time I tried to summarize it, it felt like I needed to explain five different specialist updates just for one paragraph to make sense.

So here we are. Very fun. Very medically complicated. Very on-brand, unfortunately. 🫠

TL;DR: 🖤 This past month has been genuinely hard. My knee gave out, the MRI showed structural issues, I ended up in the ER with scleritis, my neck/shoulder/spine pain has continued, and I’m trying to move as much specialist care as possible to Wellstar in Augusta so things are less scattered. I’m still waiting on the MPN specialist in North Carolina, still finishing cardiology/autonomic testing in Mississippi, and this week I have ortho, ophthalmology, and rheumatology appointments. I’ve also had to stop trying to Spark, which is Walmart delivery, right now because it doesn’t feel safe with my knee and eye situation.

This past month has been one of the harder stretches so far.

I tend to downplay things because I don’t want to worry people, and because I’m used to pushing through. But between my knee, the MRI findings, the scleritis, and the ongoing cervical spine/shoulder/upper back issues, things have gotten more limiting than I’ve probably let on.

I was still trying to Spark some when I could because I wanted to keep doing what I could. Even if it was limited, it still felt like I was holding onto some piece of normal function.

But at this point, I don’t feel like that is realistic or safe.

With my knee unstable and the MRI showing actual structural issues, pushing through could risk making things worse. And with the scleritis, I need to be careful with sun/light exposure until it’s fully resolved and rheumatology has evaluated me.

So the one thing I was still trying to do to stay a little more functional has become something I have to step back from right now. Not because I want to, but because my body is making that decision pretty loud and clear.

The hematology side is still unresolved. My platelets have been high for a long time, and ET/MPN has still been part of the conversation because of the persistent thrombocytosis and bone marrow findings.

I’m still waiting to get in with Dr. Ruben Mesa, the MPN specialist at Atrium Health Wake Forest Baptist in North Carolina. Atrium Health called recently to let me know I’m still on the wait list. It’s still going to be a wait, but they wanted me to know I hadn’t slipped through the cracks.

That meant a lot because this part has felt slow and uncertain. Sometimes even just knowing you’re still on the list helps.

The trigger point injections through pain management helped significantly at first. That was honestly validating because it showed that the muscle guarding, spasms, and myofascial pain are real. For a little while, my upper back, shoulders, and neck felt calmer than they had in a long time.

But once I started moving more again, everything got bad again.

The injections helped calm the muscles down, but they did not fix whatever is making the muscles guard like that in the first place. It feels more like my body is constantly trying to compensate for instability, weakness, mechanics, or connective tissue issues underneath it.

The muscles can be calmed down temporarily, but then once I move, they go right back to trying to hold everything together again. Which makes sense, but is also deeply annoying.

Then my knee became a much bigger problem.

Around April 23rd, I stood up and my knee basically gave out with severe pain, and it has gotten worse instead of better.

The MRI showed a chronic partial PCL tear, possible lateral meniscus tear, cartilage damage/chondromalacia, swelling/fluid, a small parameniscal cyst, and hardware-related complexity from my previous injuries/surgeries. The metal in my leg also makes parts of the MRI harder to read clearly, so ortho has to interpret it with my actual symptoms too, not just the report.

That knee issue has made everything harder.

Walking more than a few steps, standing, getting up or bending, driving, showering, stairs, errands... all of it takes more planning now. It’s not just “my knee hurts.” It’s affecting whether I can function safely.

Then I ended up in the ER with severe eye pain and was diagnosed with scleritis.

Scleritis is inflammation of the sclera, which is the deeper white part of the eye. It is not the same as pink eye or basic irritation. It can be very painful, and it can sometimes be connected to systemic autoimmune or inflammatory disease and runs risk of permanent eye damage if not managed appropriately.

The reassuring part was that my eye pressure was normal, the back of my eye looked good, and they did not see obvious structural damage at that time.

But the fact that it was scleritis still matters because it adds a new inflammatory/autoimmune clue to the bigger picture.

So rheumatology is back involved now too.

Because my care has been scattered between states, I’m trying to switch as much specialist care as possible to Wellstar in Augusta.

My primary doctor will stay in Mississippi for now because I only follow up with him as needed, and he has honestly been one of my biggest supporters as far as listening and sending referrals to the right doctors.

Right now, I have orthopedics, rheumatology, and ophthalmology through Wellstar, so I can also get established with a retina specialist. I’m also planning to do physical therapy through Wellstar/MCG physical therapy locally in Augusta once ortho decides the plan for my knee MRI findings.

This week is a big one. 📌

I have orthopedics and ophthalmology on Wednesday, and rheumatology on Thursday.

I also still have two Mississippi trips scheduled for cardiology follow-up/testing, including the tilt table test, echocardiogram, venous insufficiency testing, and follow-up with pain management.

At those appointments, I’m going to ask about referrals to Wellstar cardiology, ideally someone with dysautonomia experience, and Wellstar pain management so more of this can eventually be handled in one area instead of constantly bouncing between states for appointments. Because medically complicated is one thing. Medically complicated with interstate travel is a whole separate level.

The cardiology testing still matters because my symptoms have looked most consistent with exaggerated orthostatic physiology from venous pooling and autonomic dysfunction.

Basically, my body does not seem to regulate heart rate, blood pressure, circulation, and being upright very smoothly. That can help explain the dizziness, heart rate spikes, shakiness, fatigue, brain fog, and the way I feel worse the longer I’m upright.

🧩 So, the current picture is basically this:

I’m still waiting on the MPN/hematology specialist.

I’m still in the EDS/connective tissue workup.

I’m still being evaluated for dysautonomia/autonomic dysfunction.

My knee has become a major orthopedic problem.

The trigger point injections helped, but did not solve the underlying issue.

And now scleritis has added a new rheumatology/inflammatory concern.

So yes, it’s a lot of different body systems at once. Bloodwork, joints, nervous system, knee, muscles, and now my eye decided it wanted to be included too.

I would love for at least one system to sit this month out, but apparently we are not doing that. 🙃

The truth is that basic functioning is taking a lot more out of me than people can see.

I’m having to think through whether I can safely walk somewhere, stand long enough, handle the drive, avoid crashing afterward, keep my knee stable, manage the light sensitivity, and still have enough energy to do the next necessary thing.

That is the part of chronic illness and invisible disability that is so hard to explain.

It’s not just symptoms. It’s the constant calculation.

Can I do this?
Can I recover from this?
Will this make something worse?
Am I being careful, or am I pushing through because bills still exist?
Am I avoiding life, or am I actually listening to my body before it forces me to?

And honestly, I don’t always know the answer until my body answers for me.

Usually after I already tried to be “fine.”

I’m trying really hard to keep moving forward, get care better coordinated, and not fall through the cracks while all of this is still unfolding.

I know this is a lot to follow because it is a lot to live in. I get lost too, and I’m the one taking the notes, making the calls, tracking the referrals, remembering which doctor said what, and trying to show up to appointments with enough brain cells to explain the timeline correctly.

But I’m going to keep sharing it here because this is the part people usually don’t see.

Not just the diagnosis, if one ever finally gets pinned down.

But the middle part.

The “this is clearly not normal but nobody has tied it all together yet” part.
The “I’m trying to function but my body keeps adding new problems” part.
The “is this symptom important or am I just used to ignoring things until they become worse?” part.

Because I still feel like me.

I still want to do things. I still want to be useful and independent and spontaneous and not have to plan my entire life around whether my knee, spine, nervous system, immune system, bloodwork, or eye is going to cooperate that day.

But I’m still here.

Still trying. Still asking questions. Still showing up to the next appointment, the next test, the next referral, the next “well, that’s new.”

So if you’re here, thank you for being here. 🖤

Whether you relate personally, love someone who does, or you’re just following along because you care, I’m glad you’re here.

I hate that any of us understand this kind of thing, but I’m glad we don’t have to pretend it’s simple.

Because sometimes the hardest part is not just being sick.

It is trying to explain a body that keeps choosing chaos while you are still trying to build a life inside of it.

05/04/2026

Easter check-in & quick questions first 👇

1) If you’re in the Aiken/Augusta area, do you know a PT who actually understands hypermobility (not just standard sports/injury rehab)? Name/clinic please.

2) If you’ve done trigger point injections + PT, what helped you the most?

I said I’d post a longer update yesterday, but between traveling and not feeling great, I just didn’t have it in me.

Trigger point injections were done this past Thursday & I’ve had a little relief so far. Not a miracle. Not “fixed.” Just enough that I can tell something shifted, which I’ll take.

What I didn’t love (but already knew) is what they told me next: this won’t be long-term unless I pair it with PT. Because the bigger issue isn’t just “tight muscles.” It’s the whole compensation pattern, my body trying to stabilize itself by overworking everything.

Next big step is still cardiology testing in about ~3 weeks (venous insufficiency testing, echo, and possibly tilt table depending on scheduling). Genetic results are still pending, and UMMC genetics is still TBA until those are in.

I hope you all have a wonderful Easter & stay safe. 💛
(And yes, the animals are here for emotional support. Always.)

01/04/2026

One thing I’m realizing more and more is that chronic illness isn’t just the appointments or the test results.

It’s the weird in-between stuff people usually don’t see.

It’s planning your day around energy you may or may not have. It’s trying to look normal while your body is off on its own sick little side quest. It’s wondering whether something is “serious enough” to stop what you’re doing, and then realizing later you probably should have stopped sooner.

Honestly, that’s where a lot of the real story lives.

If you or a close friend or family member deals with invisible health stuff too, what’s one thing you wish people understood better?

30/03/2026

This Week’s Medical Update:

This past week didn’t give me one neat final answer, but it did give me something I’ve been needing for a long time — more clarity, more direction, and more of a sense that these pieces are not as random as they’ve felt.

For a long time, this has felt like trying to solve a puzzle while people kept handing me pieces from different boxes. So even though I’m still very much in the middle of it, this week mattered because things finally started making a little more sense next to each other.

My neurosurgery follow-up helped narrow some things down. Previous imaging has shown facet joint arthropathy in both my cervical and lumbar spine, degenerative changes in both areas, two small disc protrusions in my cervical spine, and the lumbar transverse process fracture that’s already been part of this picture. So there are real findings there. But even with that, neurosurgery does not believe those findings fully explain the severity of the pain I’ve been having or point to a surgical spine problem.

So basically, my spine is not exactly normal, but it also doesn’t look like the kind of problem neurosurgery can swoop in and fix. That’s a big part of why the focus shifted more toward orthopedics, pain management, and figuring out what else is driving all of this.

Cardiology was one of the bigger appointments for me this week, and honestly, one of the more validating ones too. He took my symptoms seriously and said the pattern looks most consistent with exaggerated orthostatic physiology from venous pooling and autonomic dysfunction.

Basically, that means the automatic systems in my body that are supposed to regulate things quietly in the background — heart rate, blood pressure, circulation, and how my body responds to being upright — do not seem to be regulating smoothly.

So it’s not just “my heart races sometimes.” It’s autonomic nervous system dysregulation, and that can affect a lot. It can mean blood pools where it shouldn’t, my heart rate overcompensates, I get dizzy, shaky, wiped out, foggy, lightheaded, and feel worse the longer I’m sitting or standing still. It also makes a lot of sense with the adrenaline-type surges I’ve been having, where my body seems to hit the gas way too hard and everything feels way more intense than it should.

He ordered a tilt table test, an echocardiogram, a heart monitor worn for 7 days, and testing to look at venous insufficiency and backflow in my legs. He also recommended aggressive hydration, electrolyte support, and both leg and abdominal compression to help blood flow.

And honestly, that part connects in a pretty important way to why connective tissue is still such a big part of this picture. Hypermobility is not really a question at this point — I do have generalized joint hypermobility throughout most of my body. And the genetic counselor I previously saw in February said she has a high suspicion for classical EDS. If the genetic markers come back negative, the next step she recommended would be clinical screening for hEDS.

So the connective tissue piece is very much still on the table, and it matters because it can affect things like how well blood vessels hold tone, how much pooling happens, how stable joints are, how much muscles have to overcompensate, how tissue handles strain, and even wound healing. The more this unfolds, the less these things feel separate and the more it feels like they’ve been part of the same rude group project all along.

Orthopedics looked at my shoulders themselves, and the good news there is that the actual shoulder joints do not appear to be structurally damaged. My x-rays were clean. What they did find was tenderness in the trapezius and rhomboid muscles, along with scapular winging, which basically means my shoulder blade mechanics are off and the surrounding muscles are doing way more work than they should have to trying to compensate.

So the concern there is less “damaged shoulder joint” and more muscle strain, weakness, compensation, and mechanics. And when you put that next to generalized hypermobility and suspected connective tissue problems, that kind of overcompensation makes a whole lot more sense.

Pain management also helped make the pain pattern make more sense. That doctor identified several trigger points throughout my upper back along my shoulder blades, shoulders, and cervical spine/neck and felt a diagnosis of cervical myofascial pain syndrome was appropriate. Basically, the muscles and connective tissue in that area seem stuck in a cycle of tension, spasm, knots, and pain, which fits really well with what I’ve been feeling. The current plan is trigger point injections throughout my upper back, since I’ve already tried conservative things for a while without much relief.

My primary also made some medication adjustments and helped keep the genetics side moving. I got the referral to UMMC Genetics in Jackson, and they actually called me this week. I was able to give them the information for the lab handling the genetic testing ordered through Probably Genetic so I can get in to see a geneticist for either confirmation of cEDS if the testing supports that, or a clinical screening for hEDS if the genetic markers come back negative. That part is actively moving too, which I’m really glad about.

On the hematology side, my labs are still not normal. My platelets are still elevated, and I’m still showing some other abnormalities too. The main update there is that, from a hematology standpoint when looking at bleeding and clotting risk factors, I was told I’m cleared for surgery, but she also felt it would be important for the surgeon to get input from someone more familiar with connective tissue disorders. That matters a lot, because if EDS is part of what’s going on, things like wound healing, closure technique, and the tendency for wounds to reopen or scar badly need to be taken seriously from the start.

So where this leaves me right now is not with one neat diagnosis that wraps everything up, but with a much clearer sense of the shape of what’s happening.

Right now it’s looking more and more like there are a few different layers happening at once: autonomic and orthostatic issues, connective tissue and hypermobility-related issues, a pretty significant muscle compensation and trigger point pain pattern, and all of that on top of my other already diagnosed comorbidities.

So from here, the next step is really about getting the remaining pieces confirmed, better defined, and treated appropriately. That means following through with the cardiology testing, moving forward with pain management and PT, waiting on genetic results, and making sure the surgical side takes the connective tissue concerns seriously too.

So no, I still don’t have every answer yet. But for the first time in a while, it feels less like I’m just getting bounced around randomly and more like there’s an actual shape starting to form around what’s happening.

And honestly, after how long this has been physically exhausting, mentally draining, painful, and just plain hard to explain in a way people actually get, that kind of clarity matters a whole lot right now. ❤️

More updates soon.

30/03/2026

A Strange Way to Meet Me:

I’ve been trying to think about the right way to introduce this page, and honestly, the hardest part is figuring out how to tell this story without letting it shrink me down into just a diagnosis.

Because that’s the thing people don’t always see about long, complicated, mostly invisible health stuff. It can slowly start taking up so much space that other people begin to know you by the struggle before they know you by you.

So before this page becomes a running record of appointments, testing, theories, setbacks, tiny wins, and all the in-between pieces, I want to start here:

I am a real person with a real life. I was that before this got loud, and I still am now.

Before my world started revolving around symptoms, scheduling, research, paperwork, driving, waiting rooms, and trying to connect dots that never should have been this hard to connect, I was just… living. Learning. Helping people. Planning things. Trying to build a future that made sense. Showing up for other people the best I could. Carrying a whole inner world that had nothing to do with medical language.

And to be clear, I still have that inner world.

I’m still thoughtful. I’m still weird in the ways I like. I still care deeply. I still notice things other people miss. I still want a meaningful life, not just a medically managed one. I still have ideas, humor, depth, opinions, hope, frustration, curiosity, and days where I want to talk about literally anything other than the human body.

But somewhere along the way, my life became divided into before and after.

Before things became hard to explain.
Before my body started asking for more than I knew how to give it.
Before I realized how isolating it can be to look mostly fine from the outside while your actual day-to-day life is being quietly reshaped underneath everything.
Before “I’m tired” stopped meaning tired.
Before normal tasks started having a price tag attached to them.

That kind of change is strange. It is physical, obviously, but it is also emotional, logistical, relational, financial, mental, and identity-level in ways people don’t always talk about. It changes how you plan. How you work. How you move through a day. How much energy you spend deciding what is worth using your body for. How often you have to explain yourself. How much of your life happens behind the scenes where nobody claps because nobody even knows it happened.

And I think that hidden part is a big reason this page exists.

Not because I want my life to become “the sick girl page.”
Not because I want pity.
Not because I think suffering makes someone deeper or more important.

But because there is a deeper reality to this kind of journey, and most people only ever see the surface version of it.

They see a diagnosis name, or maybe the lack of one.
They see a post here and there.
They see a snapshot.

What they don’t see is how much thought, adaptation, grief, resilience, problem-solving, self-advocacy, fear, humor, and stubbornness can live inside one ordinary-looking day.

That’s the part I want to talk about here.

Not just the medicine, but the meaning.
Not just what hurts, but what changes.
Not just the clinical side, but the human side.
Not just what this has taken, but who I am while living through it.

Because I am not interested in telling this story like I disappeared and got replaced by a medical file.

I’m still here.

More aware in some ways.
More tired in some ways.
More changed than I expected.
But also more honest. More precise. Less willing to pretend I’m fine just because pretending makes other people comfortable.

So this page is for the unfolding version of the story.
The messy middle.
The things people don’t usually say out loud.
The reality of trying to find answers while still trying to have a life.
The strange mix of grief and strength that can coexist at the same time.
The parts that are discouraging, the parts that are clarifying, and the parts that make me feel more like myself, not less.

I don’t have a neat ending to tie onto this, and honestly that feels more truthful anyway.

I’m still in it.
Still learning.
Still adjusting.
Still pushing for answers.
Still becoming someone new without fully losing who I was before.

And maybe that’s the point of this page.

Not to turn my life into a tragedy.
Not to turn it into inspiration either.
Just to tell the truth about what this kind of journey really is from the inside.

So, hi. My name is Amber ,I'm glad you're here. 🌼

29/03/2026

How This Got So Complicated:

If I had to sum up how I got here, honestly, it wasn’t one dramatic moment. It was years of things not fully making sense, until my body stopped letting me brush them off.

When things started getting worse throughout my body, I really started looking back, and that’s when it hit me that a lot of what I’ve dealt with throughout my whole life was very likely connected all along.

That’s also when I started advocating for myself a whole lot harder and speaking up more, even when it felt uncomfortable or scary. And honestly, that’s when things actually started making progress.

For a long time, things were treated like separate issues instead of possible pieces of a bigger picture. A symptom here, a problem there, another thing to push through, another thing to explain away, another thing to circle back to later.

And I think when pain and weird body stuff start young, you don’t always realize how abnormal any of it really is. You kind of grow up assuming everyone probably feels some version of this, and you get way too good at faking being okay.

So when that’s been your “normal” for so long, it can take a while to realize that what you’ve been living with this whole time was never actually normal in the first place.

And when you finally do start speaking up more, being dismissed or brushed off can really get in your head. You start questioning yourself too; like maybe you’re overthinking it, maybe it’s not as serious as it feels, maybe it really is just bad luck and bad timing.

And I think a lot of people, especially people with chronic illness or hard-to-explain symptoms, know exactly what that feels like.
But over time, it got harder and harder to ignore that this was more than that.

The patterns got louder. The symptoms got harder to work around.

The pain, fatigue, instability, weird body stuff, and overall unpredictability of it all started affecting daily life more and more, and what used to seem easier to brush off started becoming impossible to keep pretending was “just one of those things.”
So that’s what led me here.

Right now I’m in the middle of a pretty complicated diagnostic process involving probable connective tissue disorder causing systemic issues, autonomic dysfunction, and long-standing blood count abnormalities that have been raising questions for years.

Some things are strongly suspected. Some things are still being ruled in or out. Some things have only led to more questions so far.

And honestly, that’s part of what makes this kind of thing so exhausting.

It’s not just being chronically ill. It’s the waiting. The explaining.
The traveling. The trying to connect dots that probably should’ve been looked at more closely a long time ago.

The feeling of knowing your body is not okay while still having to keep functioning in the meantime.

The mental toll of being brushed off, misunderstood, or made to feel like you’re somehow overreacting to things that are very clearly affecting your life.

And if you’ve ever been there, if you’ve ever felt dismissed, doubted, or like you had to translate your own body over and over just to maybe be taken seriously, then you probably already know how heavy that gets.

A lot of my care right now is spread across multiple states because different specialists are looking at different pieces of what’s going on.

So this has turned into a very real mix of appointments, testing, follow-ups, travel, waiting on results, trying to manage symptoms in the middle of all of that, and basically learning how to live inside a body that feels a whole lot less predictable than it used to.

There’s also more than one issue happening at the same time, which makes everything feel even messier. It’s not one neat diagnosis, one neat appointment, or one neat answer. It’s layers.

And those layers have affected my body, my work, my plans, my energy, and honestly just the way daily life functions all around.

That’s a big part of why I wanted this page.

Because this didn’t happen overnight, and it’s not simple, and quick updates only show the tiniest piece of what this has actually been like. I wanted somewhere I could tell the fuller story as it unfolds; not just the medical parts, but the human parts too.

So this is the shorter version of how I got here.

And from here, I’ll be sharing more about what things look like now, what’s currently being worked up, and what this process is like in real time.