PEER - Peer Empowerment Education Resource

05/03/2026

There’s still time to register for Preparing for Your Long-Term Disability Claim, a FREE webinar at 1 p.m. ET on Tuesday, March 10.

Join us to hear from experienced attorneys about strategies to consider and missteps to avoid when it comes to employer-based Long-Term Disability (LTD) claims.

Register today: https://us02web.zoom.us/webinar/register/WN_o-sys8gyQOyFvGokb7L4Xg

05/03/2026

US Pain Foundation is an amazing organization in so many ways. Here’s some information some may find helpful.

Don’t miss out — have you registered yet for Preparing for Your Social Security Disability Claim?

This FREE webinar, being held at 1 p.m. ET on Thursday, March 12, will share insights from an experienced disability attorney about applying for Social Security (SSA) benefits when you live with pain.

You’ll leave with actionable insights about the nuances of SSA applications. Register and share today: https://us02web.zoom.us/webinar/register/WN_ZsQuwaVhSgqFRzrhdIeVyw

04/03/2026

🌿 Post 11
Wait… THAT wasn’t normal?

One of the hardest parts about recognizing connective tissue differences is this:

Many of us did not realize anything was unusual because it felt normal to us.

The joints everyone called “flexible.”
The strange sitting positions.
The traits that seemed to show up across generations.
The relative who casually says, “Oh yeah, I just put it back in.”

When something is genetic, it often looks ordinary within a family.

So kids grow up hearing:

“You’re just flexible.”
“You’ll grow out of it.”
“That’s just how our bodies are.”

And nobody looks closer.

Here is the important part.

Joint mobility varies in the general population.

Some people have greater range of motion without pain or functional limitation.

However, when increased mobility is accompanied by recurrent instability, disproportionate pain, regulation differences, or multisystem involvement, it is not simply a personality trait or a matter of being “flexible.”

The movement alone does not determine significance.

The pattern and its impact do.

Patterns do not always appear all at once. They can begin subtly, with small inconsistencies that seem unrelated or easy to explain away.

An ankle that rolls a little too often.
Fatigue that feels slightly out of proportion.
Dizziness that comes and goes.
Digestive issues that are labeled as “just sensitive,” “normal for me,” or written off as “IBS just runs in my family.”
Pain that is manageable, but persistent.

Impact is not always dramatic or easy to describe. It can develop gradually and become normalized over time.

Normalization does not make it insignificant.

Modern healthcare is often organized around individual specialties. Each system may be evaluated carefully within its own domain.

But patterns that span multiple systems require someone to step back and look at the whole picture.

Sometimes the missing piece is not another isolated evaluation.

It is integration.

This bingo card is not about diagnosing anyone.

It is about recognizing patterns that only become visible when the pieces are seen together.

If you cannot connect the issues, think connective tissue.

In Graphic 2, we look at the childhood labels many people grew up with.
In Graphic 3, we explain why flexibility and hypermobility are not the same thing.
In Graphic 4, we zoom out to see how connective tissue supports skin, joints, and structure.
In Graphic 5, we explore the quiet compensation strategies many people never realized they were using.
In Graphic 6, we step back further and look at how patterns can span multiple systems.

Different family members may have very different levels of symptoms.

Some may notice only small quirks.
Others may live with life-altering effects.

Both experiences can come from the same genetic foundation, and neither should be dismissed.

For people new to this space, you might suddenly recognize yourself here.

For those who have been learning for years, you might finally have language for things you always sensed but could not explain.

And for practitioners, these signs are often present long before patients have words for pain, fatigue, dysautonomia, or instability.

Sometimes the clues are quiet.

Sometimes they are hiding in plain sight.

And sometimes the realization is simply this:

Maybe this wasn’t random after all.

Which square made you pause?

Move gently. These are observations, not challenges. 🌿

PEER

02/03/2026

On heavy days, the mind tells you
it’s all or nothing.
Perfect or pointless.
Finish everything… or do nothing at all.

But healing — and living —
has never worked that way.

Progress is built from fragments.
From tiny acts of care.
From choosing movement
even when motivation is absent.

So look for what you can do
with the energy you do have.

Because one folded shirt
is resistance against chaos.
One rinsed plate
is proof you still showed up.
One small step
is the quiet refusal to give up on yourself.

Little wins are not small.
They are foundations.

They tell your nervous system:
“I’m still here.
I’m still trying.
I’m still capable.”

And over time,
these 1% efforts accumulate
into rooms cleaned,
days reclaimed,
lives rebuilt.

So today, don’t measure yourself
against everything undone.

Measure yourself
by the one thing you did.

Because 1%
will always, always
beat 0%. 🌱

27/02/2026

Our development -and apparently that of nature overall- doesn’t move in a perfect straight line. It circles, at times in the same place, without depth, without elevation, and other time we assimilate, click, experience epiphanies. The latter is what can make us spiral deeper in knowledge and higher to broaden our perspective. This has nothing to do with accumulation of information, even though it can be of help in the process.

More often than we’d like to admit, we need to return to the same themes we didn’t give much importance. And other times we even experience the same wounds, in the same or a different form. The same questions we were sure to have figured out might pop out in our heads and make experience a sense of confusion and insecurity.

When we go through this, the first feeling that might come without much warning can be discouragement. In some corner of our mind we think that we’re back right where we started. Don’t accept this suggestion without critical thought. I found out that more often than not, it was an automatic, self-imposed illusion.

With more discernment and self-compassion combined, we can see past that veil of illusion the fact that we’re meeting the same lesson -or this lesson with an upgrade, now that we’re ready- from a different “level” of awareness.

That what it means for the path to be like a spiral. We move (symbolically speaking) “two steps forward” to explore, to overcome our limits, to open our mind which tends to crystallize if we live it passive for long enough, and “one step back” in order to assimilate, feelings, experiences, lessons.

When we confuse these lessons for standing in one place, miss what’s really going on. What’s truly going on is that we revisit what we thought you understood - it can be patience, boundaries, discipline, love- and we see something we couldn’t see before.

We don’ outgrow every mistake once and for all. We integrate them gradually. And often pain of the ego, or pain of regret is part of the ‘package’. In cases like this, the pain we feel in this return is another layer of illusion that is striped. The less friction, the less resistance towards this fact, the less we suffer.

25/02/2026

PEER Post D - What I Didn’t Expect 🌿

I didn’t expect Day 7 to be the day I wondered whether I had damaged my own surgical outcome.

Yesterday was my post-surgery follow-up after a complex nasal reconstruction. Everything looked exactly as expected. My surgeon removed the stitches along with both the internal and external splints. Up to that point, recovery had felt remarkably smooth.

Then yesterday evening, the swelling really took off.

My nose felt tighter, firmer, and noticeably more swollen. It made sense that swelling would increase. The follow-up itself involved a fair amount of manipulation, and I am still actively in the healing phase. At the time, though, that was all I noticed.

Later that night, while getting ready for bed, my thumb knuckle caught the sidewall of my nose and I heard a crunch. I immediately noticed what looked like a dent. By the next morning, it was still there, and that side felt more obstructed.

My brain moved quickly to an explanation. What went wrong? Was it the crushed cartilage placed in my nasal sidewalls? Did I cause permanent damage? Was the dent connected to the feeling of obstruction?

The theory formed quickly. I must have dented my nose. The sound was cartilage compressing. I convinced myself that a structural change had occurred.

It felt logical. It matched the timing. Once the idea formed, every new sensation seemed to support it.

Then my thinking shifted toward the swelling itself. The tightness felt more pronounced than expected. Given my history of constant non-pitted edema, intermittent pitted edema, and symptoms suggesting lymphatic and vascular involvement, I wondered whether my nose might be more sensitive to changes in sodium during recovery than the rest of my body.

Around days 4–5, I had resumed my normal diet, including electrolyte drinks for POTS support and a generous return to my beloved Tony Chachere’s Cajun seasoning. Looking back, my sodium intake increased abruptly. I also realized I had been sleeping under a heated blanket each night, a small comfort that may have quietly contributed to increased facial swelling during early healing.

Only later did I realize that the day swelling increased was unusually active for early recovery, including travel to appointments and errands I probably didn’t need to push through yet. I also realized I had resumed normal-sized meals again. Digestion itself is physiologically demanding, and larger meals may have added another layer of vascular and fluid shifts during a phase when my tissues were already reactive.

With all of that in mind, I decided to call my surgeon’s office.

With a mixture of concern and curiosity, I spoke with the on-call doctor for about 20 minutes. He listened carefully and explained that with such a complex surgical case, intervening without knowing the exact operative details could do more harm than good. My surgeon being out of state made waiting for follow-up reasonable, and scheduling an appointment for the day he returns felt logical.

He suggested the dent could represent an adhesion acting like Velcro, becoming more visible as swelling increased. His biggest concern was actually the degree of swelling itself. We discussed my sodium intake, my history of mixed edema symptoms, and possible lymphatic involvement. Together we agreed on a temporary plan: lowering sodium intake, supportive hydration, lymphatic-supportive measures, icing, and continuing to sleep elevated with a wedge pillow until I am seen.

After that conversation, my concern about the dent felt rational but no longer urgent. While updating my nurse friends about the swelling, something clicked.

The video I had sent Alyssa the night before was timestamped an hour before I bumped my nose.

The dent was already there.

Gentle saline care also significantly improved airflow, suggesting swelling and internal healing rather than structural damage.

That realization shifted everything.

The physiology started to make more sense.

I may not yet know the full explanation, but I am reminded how important it is to slow down before deciding what a symptom means.

Even with medical knowledge, discomfort and uncertainty can push us toward quick conclusions. Our brains are remarkably good at building coherent stories from incomplete information, especially when the body in question is our own.

Good clinical reasoning is not just forming hypotheses. It is actively looking for evidence that might prove us wrong.

This experience also reminded me that, having never gone through nasal surgery before, there truly is a learning curve in understanding how differently facial tissues heal.

Healing is not linear. Physiology is interconnected. Sometimes the most helpful question is not “What went wrong?” but “What else could explain this?”

23/02/2026

Post C: This Wasn’t Cosmetic. It Was Structural.

I want to talk a little more about the nasal reconstruction surgery I had on February 17, because the more I understand what was actually wrong, the more I realize how many people may be living with similar symptoms without realizing there can be a structural reason behind them.

For years, I thought I just had a narrow nose, chronic congestion, poor sleep, and a nervous system that never fully settled. I tried medications, allergy treatments, positioning changes, and in recent years worked hard to comply with BiPAP therapy after being diagnosed with complex sleep apnea.

But something never added up.

I was supposed to feel better using the BiPAP, but no matter what I did, I would wake up pulling my mask off and grabbing my nose. If I inhaled just right, with or without the BiPAP mask on, my nostrils and the sides of my nasal bridge would collapse inward. Breathing wasn’t smooth. It was effortful.

What we eventually discovered was not inflammation, sinus disease, or a harmless thin nose.

It was structural collapse.

My internal and external nasal valves, the narrowest and most important part of the airway, were collapsing when I breathed in. My septum was slightly deviated, the nasal sidewalls lacked support, and multiple levels of the nasal framework were severely unstable. Essentially, my airway behaved like a soft straw that pinched closed under pressure.

The surgery I had was not a cosmetic rhinoplasty. It was a full structural reconstruction of the nasal airway.

My surgeon:
• straightened the septum
• rebuilt internal airway support
• reinforced collapsing sidewalls
• placed multiple cartilage grafts for stability
• harvested cartilage from my ears to act as structural support beams
• widened airflow channels
• reduced turbinate obstruction (turbinates are normal structures inside the nose that warm and humidify air but can become enlarged and block airflow)

In simple terms, he rebuilt the internal framework of my nose so it can stay open instead of collapsing.

It is important to say clearly that not everyone has this level of complexity. Most people with breathing issues do not require reconstruction this extensive. However, within the connective tissue disorder community, structural weakness and tissue laxity make airway collapse much more plausible than many of us realize. If symptoms persist despite treatment, it becomes something worth evaluating.

My case is also being used as a surgical case study. My surgeon performs this reconstruction using a technique that very few surgeons currently replicate, and part of his goal is to educate other surgeons on how this type of functional airway reconstruction can be performed and reproduced safely for complex patients.

Why does this matter beyond breathing?

Because breathing is directly connected to the nervous system.

When airflow is unstable, the brain interprets breathing as unsafe even when oxygen levels are normal. The body stays in a subtle state of physiologic alertness. Over time, that can contribute to poor sleep, headaches, autonomic dysfunction, fatigue, and a constant feeling of internal strain.

What has surprised me most so far is how calm I feel.

Almost immediately after surgery, my heart rate variability (HRV) shifted into the “great” range, something I rarely see. HRV reflects how adaptable and regulated the nervous system is. It is early, and healing will take months, but it is an interesting physiologic signal that my body may already be experiencing breathing differently.

Healing will take time. Swelling is still significant, and recovery is real. But the goal was never cosmetic change. The goal was physiologic stability.

If you have ever experienced:
• feeling like you cannot get a satisfying breath
• compulsive need to remove CPAP or BiPAP in your sleep
• nostrils collapsing when inhaling
• chronic mouth breathing
• unexplained fatigue despite treatment
• headaches or nervous system overload without a clear cause

it may be worth asking whether airflow itself is part of the puzzle.

Sometimes the issue is not effort, compliance, or anxiety.

Sometimes the structure simply needs support.

I will continue sharing updates as healing progresses, both the wins and the realities, because shared experience helps people recognize possibilities they did not know existed.

- Shelly

23/02/2026

Check out PEER - Peer Empowerment Education Resource for more updates.

22/02/2026

PEER 🌿 exists to make complex illness make sense.

Living with chronic illness can feel fragmented. Symptoms don’t stay in one system. Progress isn’t linear. And many people are left trying to connect pieces without a map.

The PEER Compass is the framework guiding this page.

Here you’ll find four kinds of support:

• Peer (Community) — shared experience and honest reality
• Education — understanding the “why” behind symptoms
• Empowerment — learning how to advocate and navigate care
• Resources — practical tools that may help along the way

At the center is pattern mapping — seeing how systems connect instead of treating each symptom in isolation.

You don’t need to read everything in order.
Just start where you are.

Rotate through connection, clarity, action, and support.

Understanding often comes before progress feels visible.
Clarity comes from seeing the patterns. 🌿

🌿

22/02/2026

Post B: Preparing the Whole System 🌿

One thing I learned after my hysterectomy is that surgery recovery is not only about the surgery.

My procedures themselves tend to go well. Surgeons do their job beautifully. Healing on paper looks successful.

But for me, the harder part has often come afterward.

The full-body response.

The nervous system recalibration.
The fatigue shifts.
The way chronic illness can turn a localized procedure into a multi-system recovery.

So when this surgeon told me I might be out of work for about a week, I honestly struggled to believe that could be true. My past experiences taught me that recovery is rarely that simple when you live in a complex body.

This time, I approached things differently.

I prepared from multiple angles before surgery ever happened.

I expanded my clinical support team so I would not be navigating recovery alone or reacting after problems appeared. I wanted guidance already in place in case my body needed more support than expected.

I also leaned more intentionally into working with my mental health coach to support multiple layers of recovery. I originally began working with her because my daily functioning had become difficult, and together we focus on both the physiological realities of my body and the psychological barriers that can develop when a nervous system has been pushed for too long.

Our work combines practical regulation strategies with rebuilding stability step by step through Maslow’s Hierarchy of Needs, helping me move from survival mode back toward sustainable functioning.

Going into surgery, I knew I needed that foundation already in place. Recovery does not just affect the surgical site. It affects the nervous system, energy regulation, identity, and expectations. Having that support meant I was not walking into recovery hoping my body would cope. I was preparing it to.

I do not know yet whether my body will experience a larger systemic crash after surgery. That uncertainty is part of living with connective tissue disorders and dysautonomia.

But what feels different this time is preparedness.

Instead of waiting to react, I built support systems ahead of time.

I also began shifting my focus toward nutrition before surgery. Since supplements had to be paused, I worked on improving how I fuel my body through food itself. Recovery has reinforced something simple but important for me:

Food is not just comfort or convenience.
It is support.
It is repair.
It is energy for healing.

Right now, I am using this surgery as a kind of reset point. Not a dramatic transformation, but a gentle reboot toward supporting my body more intentionally.

Because healing, especially in complex illness, is rarely one big breakthrough.

It is preparation.
Support.
Small decisions repeated consistently.
And learning how to work with the body instead of constantly fighting against it.

Whatever happens next, I know this:

I did not walk into this surgery unprepared.

And sometimes, that alone changes the outcome more than we realize. 🌿

22/02/2026

Post A: Early Days of Recovery 🌿

Here’s an update now that I am a few days into recovery.

On Tuesday, February 17, 2026, I had nasal reconstruction using cartilage grafts to support airway collapse, along with reshaping and stabilization of the nasal bridge and nostrils.

In simple terms, my airway finally has structural support where it used to collapse.

As part of the reconstruction, cartilage was taken from both ears, which explains why they are currently just as swollen as my face.

And this part surprised me the most.

Nothing from the surgery itself really hurt.

Day 1 and Day 2 were extremely painful, but not because of the surgery. What I felt most was a severe cervicogenic headache caused by subluxations involving my first posterior rib, neck vertebrae, and collarbone. My underlying chronic pain was screaming during those first couple of days. I was sensitive to every little sound and even small amounts of light. Since I’m recovering on the couch, my boyfriend literally cut pieces of cardboard to fit the windows to block out the light because the pain was so intense.

Day 2 was also my most swollen day by far.

By Day 3, things turned a corner. I was able to be up a little more, turn on the TV, and start feeling human again, although I may have slightly overdone it because Day 4 has slowed back down to allow for more quiet rest.

The procedure involved internal splints that allow some airflow rather than tightly packing the nose, which I am incredibly grateful for. For the first couple of days I could partially breathe through both nostrils, which honestly felt wonderful.

One thing this experience highlighted for me was how significant even partial nasal airflow can be during recovery. Compared to patients who must fully mouth-breathe, that small amount of airflow made a meaningful difference.

Right now swelling and internal splints have reduced airflow again, which may vary during healing. By the end of Day 3 I lost airflow through my right nostril, and that definitely brought some anxiety with it. Even so, having experienced even partial nasal breathing showed me how much easier recovery feels when the airway is supported at all. My mouth wasn’t as dry, and I could sleep and eat more comfortably.

I’m incredibly grateful for a Johns Hopkins–trained surgeon from Washington, DC, whose technique and attention to detail made this possible, even if Wisconsin only gets to borrow him for a little while.

My ears themselves are not painful. They are mostly just swollen, and my nose is now slightly annoying as healing has started because it itches at times. Around Day 4 I also began feeling tingling at the tip of my nose, which is likely nerve sensation returning after it was numb immediately following surgery.

And honestly, by the looks of me, you would probably assume I am in significant pain. But surprisingly, my face itself has not been the hardest part of recovery.

I also chose to refuse narcotic pain medication. I don’t find them helpful for me personally, and they tend to make me nauseated, especially if my stomach is empty. Instead, I placed myself on a soft diet early on to make breathing and jaw strain easier during recovery.

Recovery has been a good reminder that bodies are complicated, and mine especially likes to keep things interesting. I know many of you understand exactly what I mean.

Today is mostly extra rest and quiet time, with my loyal recovery assistant Blueberry (Baby Ber-Ber) staying close by.

I’m continually reminded to listen as carefully as possible to what my body needs, and to allow recovery to unfold one day at a time, or when pain is intense, moment by moment. 🌿

20/02/2026

I’m still not feeling the best (mostly it’s the chronic pain that got on the way). If you’d like to see some pics of my raw recovery, drop the word PICS below and I’ll send you some. Don’t mind my messy hair, swollen face, etc. once I’ll feeling better I’ll try to make some more fb appropriate to post. Lol