Chronic Resilience

02/09/2026

An Olympian just did a backflip on ice.

I just wrecked my hyperbole and arthritic fingers reaching for toilet paper. Spoonie award must be in the mail.

I guess everyone has their own specialties in life.

02/08/2026

02/08/2026

My mind swirls.
I love Linsey’s determination.
She is clear on her goals.
Other people’s opinions be damned.
Her family, team of competitors and rehab specialists are 100% behind her.
Her nation is behind her.

Yet, as a person with decades of chronic illness and years of chronic debilitating pain, I receive very different messages.

Don’t push too hard.
Let your body rest and recover.
Are you sure you have the issues you think you have?
Were you really diagnosed, or just think you have it because you saw it tik tok?
Have you tried yoga?
If you don’t use it you’ll lose it.

Everyone has an opinion and even the medical opinions are divided by ego and specialty with none looking at the body as a whole.

While my goal is as clear as Lindsey’s, my experience is quite different.
I want to gold medal in life. Living it fully, being healthy, enjoying my family and contributing to the world in a positive way.

What we learn from Lindsey:
Surround yourself with people who believe in your goal.
Do not waste time and energy on those who doubt.
Other peoples opinions do not matter.
Set backs happen, but how you handle them matters much more.

Wishing Lindsey the best as she recovers mentally and physically.

Wishing the rest of us can learn from and be more like her.

02/05/2026

02/02/2026

Great advice for explaining pain. Really good for in a drs office

Why you say "It's a 4" when a healthy person would be screaming?

"Rate your pain on a scale of 1 to 10." It is the most common question in medicine, and for people with Ehlers-Danlos Syndrome (EDS), it is also the most dangerous.

Why? Because we are speaking a different language from our doctors.

The "Chronic Calibration" Error. For a healthy person, "0" is no pain. "10" is the worst pain of their life (usually a major broken bone or surgery). For us, "0" doesn't exist. We live at a baseline of 3 or 4. Just existing in gravity hurts.

Because our brains are constantly bombarded with pain signals, we "recalibrate" the scale to survive. According to information from the Ehlers-Danlos Society, people with Ehlers-Danlos syndromes often cope with pain from issues like subluxated ribs, so they can manage daily tasks and interact with their families. "That's a 5. It's annoying."

* A twisted ankle? "That's a 3. I can walk it off."

The Danger in the ER. Here’s how the mismatch can affect you: Imagine you enter the ER with a serious injury, calmly tell the doctor, "It's about a 6," and the doctor interprets this as, "This is distracting but manageable." What the doctor doesn't realise is that your "6" would register as a "9" for someone without your experience of pain.

Conversely, if you say, "It's a 10," but you aren't screaming (because you learned years ago that screaming doesn't help), they label you as "drug-seeking" or dramatic.

The Solution: Replace numbers with a Functional Rating. Numbers are subjective; function is concrete. Next time a doctor asks for a number, give a Functional Rating instead:

* Instead of "It's a 7," say: "I cannot stand up long enough to take a shower."
* Instead of "It's a 5," say: "It is distracting me from conversation, but I can sit still."
* Instead of "It's a 9," say: "I am unable to think, move, or speak due to the pain."

Your endurance is remarkable; let’s channel it toward securing timely care rather than masking need. Don't let your high tolerance become your barrier to care. You don't get extra points for suffering in silence. Remember, seeking help is a strength, not a weakness. Prioritising your well-being shows courage, and your health should always be a priority without any guilt.

👇 Tell me: What is the worst injury you walked around on because you thought it was "no big deal"?

Educational discussion only. Not medical advice.
sources:
Open Resources for Nursing (Open RN); Ernstmeyer K, Christman E, editors. Nursing Fundamentals [Internet]. 2nd edition. Eau Claire (WI): Chippewa Valley Technical College; 2024. PART XI, COMFORT.
Mankoski Pain Scale / Functional Pain Scale principles (This is the standard name for the "Functional vs. Numerical" method used in chronic pain advocacy).

01/23/2026

Chronic illness - in a cake design!

01/20/2026

In Sickness and In Health.

Every person with chronic illness wonders if anyone can or will live them through it all. The question is 100% valid.

In all honesty- a lot of spouses can’t handle it and walk out.

Good bless those that can and do love us.

(Shoutout to my husband, daughter and son in love)

well done!

01/19/2026

This seems like it must be true in similar ways of many health challenges.

"If I’m so healthy, why can’t I function?" 📉🩺

This is the most dangerous phrase in chronic illness: "Your labs came back normal."

It sounds like good news. But when you are in pain, it feels like gaslighting. It makes you question your sanity. You start to wonder if you really are just "dramatic" or "anxious."

The Clinical Reality: You aren't crazy. You are being measured with the wrong ruler. Modern medicine is built to detect Structural Damage (tumors, broken bones) or Biochemical Extremes (infection, organ failure).

Ehlers-Danlos Syndrome is a disease of Functional Failure and Micro-Trauma. Standard tests are blind to it.

1. The MRI Blind Spot (Gravity) 🧠 A standard MRI takes a picture of your neck while you are lying down.

The Flaw: Without gravity, your loose vertebrae might slide back into perfect alignment.

The Reality: The test captures the "safe mode." It misses the moment you stand up, gravity hits, and the bone slides into the nerve (Instability/CCI).

2. The Blood Blind Spot (Mechanics) 🩸 Routine blood work looks for inflammation markers (CRP/ESR).

The Flaw: EDS is a mechanical defect, not an autoimmune disease. Your collagen is tearing microscopically, but it doesn't always trigger the specific chemical alarms doctors look for.

3. The Strength Blind Spot (Endurance) 💪 A neurologist asks you to push against their hand for 3 seconds. You pass. "5/5 Strength."

The Flaw: Standard exams test Peak Force. They do not test Fatigability. You have "Burst Strength," but your muscles burn out after 30 seconds of stabilizing loose joints.

The Takeaway: A "Normal" result doesn't mean nothing is wrong. It often means the test was looking for a lion (cancer/infection), and you have a swarm of bees (instability/dysautonomia).

👇 Which test was "normal" right before your health collapsed?

Disclaimer: I am an educational content creator. A 'normal' test is valuable for ruling out other things, but it is not the whole story.

Sources:

Castori, M. (2012). "Ehlers-Danlos Syndrome, hypermobility type: an underdiagnosed hereditary connective tissue disorder." ISRN Dermatology.

Henderson, F. C., et al. (2017). "Cervical medullary syndrome in secondary atlantoaxial instability." (Discussing dynamic imaging vs static).

Voermans, N. C., et al. (2009). "Neuromuscular features of Ehlers-Danlos syndrome." (Discussing fatigue vs. strength).

01/16/2026

Great idea to try for chronic pain. Also a great explanation of the need to nap/ reset.

"I felt guilty for sleeping at 2 PM. But my pain was at an 8/10." 📉🛌
We are taught that napping is for "lazy" people.
The Science: Chronic pain is metabolically expensive. Your brain is processing constant "Danger" signals, which burns through your energy reserves (glucose) faster than a healthy person.
The Benefit: The Pain Reset. 🔄
Research shows a direct link between sleep loss and Hyperalgesia (increased sensitivity to pain).
The Mechanism: When you are awake, a chemical called Adenosine builds up in your brain (sleep pressure). High adenosine levels can lower your pain threshold.
The Nap: A short sleep clears some adenosine. It literally "resets" your nervous system's ability to tolerate pain.
The Trap: The "Groggy Monster" (Sleep Inertia). 🧟‍♂️
Have you ever woken up from a nap feeling worse? Heavier? More painful?
Why: You slept too long.
The Biology: If you nap longer than 30 minutes, you enter Deep Sleep (Slow Wave Sleep). Waking up from this stage causes Sleep Inertia—a state of severe brain fog and disorientation that can last for hours.
The Protocol: The "Nappuccino." ☕💤
To get the pain relief without the grogginess:
Drink a cup of coffee/tea.
Immediately lie down for 20 minutes.
Wake up: The caffeine kicks in right as the 20 minutes ends, helping you clear the grogginess instantly.
The Takeaway:
If your body demands sleep, it isn't being lazy. It is trying to lower the volume on your pain. Listen to it—but set an alarm.
👇 Do you wake up refreshed or like a zombie?
Sources:
Haack, M., et al. (2012). "Sleep deficiency and chronic pain: potential underlying mechanisms." (Explains how sleep loss increases inflammatory markers like IL-6).
Roehrs, T., et al. (2006). "Sleep loss and REM sleep loss are hyperalgesic."

12/28/2025

I love this quote. I have heard it in different forms, so I don’t know who to credit. But I do salute the wisdom!

“If our first conversation is about the problem...
The second conversation needs to be about solutions.”

I’m always astonished at how many people want to focus on the problem and who to blame for it.

Often the keys to the jail are on the wall, well with in our own reach. We just need to look for the keys instead of staring at the locked door.

I grabbed the keys, unlocked the door and walked away.

You can too.

What is holding you in that cell?

Old thinking? Lack of motivation? Need support?
Maybe an unproductive, unhealthy group of friends or family?

Grab the keys! You are the most consistent factor in your life. It all begins with the decision to unlock the door instead of complaining about it.

12/25/2025

Even Santa knows: it’s not about how you arrive, it’s about spreading joy.
Wishing you smooth rides, warm hearts and zero awkward family discussions this holiday season.

Happy Holidays to all of you 🎄🎅😄