The Connective Issue

12/21/2025

12/18/2025

12/18/2025

As sad as I am for my own limitations, it is heartbreaking that my kids likely won't remember the ME before. The active, adventurous, no-fear mom I used to be. And they've never known the BEST version of me...the young me who never stopped. Who fished, hunted, played softball and worked hard. Whose life was ATVs, watersports, wrestling the boys, driving anything with a motor too fast, and proving I could keep up with my "older brothers." Unfortunately, most of their memories will be of this broken body who needed so much of their help, a lot of rest, and required a lot of "NOs" in the form of "I'm sorry, but I can't."
I don't want this thing to be WHO I am, but it does affect every part of my life, every decision, every day. Each decade has brought further degeneration, more limitations, and learning how to live within those and still be content.
It's a very long game of being thankful for my blessings and that I'm still here, pushing through pain without affecting those around me, constantly learning more and fighting to stay functional, and wracking up some serious questions for the Lord.
I pray with all my heart that they don't end up like me and that they'll remember how hard their Mama tried. And I look forward to us all being together with our new bodies one day✝️

12/14/2025

Every decision, every day.

https://www.instagram.com/p/DSJJeGFkUdU/?img_index=1&igsh=Z2c4NWNzMmNpdW1j

12/14/2025

Why is tinnitus SO common in people with hEDS?

If you’re bendy and your ears won’t stop screaming… you’re not imagining it. Tinnitus shows up way more often in people with hypermobile EDS, and here’s why:

🦓 Wobbly joints = wobbly eustachian tubes
Connective tissue holds those tiny ear structures in place. When it’s lax, the eustachian tubes can flop, stick, or not regulate pressure properly… cue ringing, fullness, popping, and that “underwater” sound.

🦓 Neck instability can mess with the auditory nerves
Cervical hypermobility or muscle tension around the neck/jaw can irritate nerves and blood flow linked to hearing. Many people notice their tinnitus flares when their neck is bad.

🦓 Blood flow weirdness (hello, POTS)
With POTS, heart rate and blood flow can spike and dip… and your ears notice. Whooshing, pulsing, or “heartbeat in your ear” tinnitus is super common.

🦓 TMJ dysfunction
Hypermobility LOVES to target your jaw. When the TMJ joint is unstable or inflamed, the shared nerve pathways with the ear can trigger tinnitus.

Is this something you deal with, too?

12/11/2025

hEDS research just took a wild turn. For years we were told: “It’s just collagen.” But new studies from 2023–2025 are proving that’s outdated.

Instead of a single collagen problem, hEDS looks more like a whole-body network issue. The nervous system, immune system, and connective tissue are all out of sync.

Some highlights:
• KLK15 gene disrupts the enzymes that build connective tissue, not collagen itself.
• Variants in ACKR3 & SLC39A13 link hEDS to neuro-inflammation and zinc enzyme issues.
• A 52 kDa fibronectin fragment shows up in every hEDS/HSD patient—could be the first real biomarker.
• Stretch-mark-like tears in the esophagus may be a visible diagnostic sign.
• Over half of patients scanned had C1 vertebra arch clefts, explaining neck instability and neurological symptoms.
• The immune system is in “complement exhaustion,” constantly cleaning up tissue micro-injuries.
• Trials exploring Low-Dose Naltrexone, Vagus Nerve Stimulation, and Green Light Therapy are targeting neuro-immune pathways directly.

The takeaway: hEDS isn’t just “loose joints.” It’s a neuro-immune-stromal disorder, and connective tissue issues are only one part of the puzzle.

Does this new research match your experience living with hEDS?

• Stretch-mark-like tears in the oesophagus may be a visible diagnostic sign.lagen.” But new studies from 2023–2025 are proving that’s outdated of sync

12/10/2025

Public Service Announcement from Your Friendly, Immunodeficient Neighborhood Human:

If your child currently has:
A runny nose
A cough
Crusty eyes
A “mystery fever”

Or has simply looked at another child who had one of the above...

PLEASE keep your adorable little snot goblin at least 30 feet away from me.

And adults — don’t think you’re off the hook.
If you’ve been:

Exposed
Near someone exposed
In the same area code as exposure
Or simply “not feeling great but it’s probably allergies” (it’s never allergies)

Please step back like you’re defusing a bomb.

Because listen…

My immune system is so weak I could catch a case of gas from a fly.
Not even a sick fly.
A tired fly who dared to land in the Taco Hell drive through.

One sniffle in my direction and boom — I’m down for three to four weeks. The cough might outlast the newest Grey's Anatomy season. What was a little 2 day cold for most, is an entire respiratory system assault that takes home remedies, over the counters, prescriptions, prayers and a new baptism for me to get over.

So please, for the love of all things holy and hand-sanitized:
If you're oozy, sneezy, wheezy, queasy, or have a child who produces more mucus than a special effects studio… keep a respectful perimeter.

My antibodies are doing their best.
They are failing, but they are doing their best.

Thanks for your consideration 🧼😷🦠

12/08/2025

Anyone else stuck in "The Loop"?
What has worked for you?
So far I've tried dry needling in my ears to target the vagus nerve. It seems to work, but is temporary and requires I keep doing it (at least for now).
I've been playing with my bed elevation (I have an adjustable bed). It does seem to help as well, but raising the head makes my back hurt when I side sleep (I roll all night).
Some days I hydrate well, and some days I forget🤷🏻‍♀️
I've been taking magnesium glycinate for months, not sure that it's doing much. My doctor did recommend "Neuro-Mag"...haven't tried that yet.
I think I'll try sleeping in my soft cervical collar...does anyone do that?

12/08/2025