Who I Am and Why This Blog Exists (Or: How a Nine-Year-Old Fainting Under a Church Pew Started All of This)

If I had to guess, I would say it started back in 1981 on Easter Sunday.

I was dressed up and standing in church, minding my own business, when my nervous system made an executive decision. I fainted. And slipped right under the pew. Before I hit the floor, I was scolded by my mom for “acting up” in church because she thought I was laughing with my cousin. Nope, just fainting.

Low blood sugar was blamed for my fainting spell, even though it was Easter and I had consumed a genuinely heroic amount of chocolate before the mass. Two years later, when the hives appeared, I was told those were a figment of my imagination.

I was a child with an autonomic nervous system already in revolt, autoimmune urticaria nobody believed existed, and a spine quietly deteriorating. The medical consensus was essentially: less candy, less soda, and stop making things up.

For the record: I was right. About all of it.

What I didn’t have a name for back then, and wouldn’t for decades, was medical gaslighting.

The part where it just kept going

I have had Degenerative Disc Disease since I was 18, just like both my parents. When I told my childhood doctor my symptoms, he told me I was too young for back trouble, then told my mom it was in my head.

That pattern would continue for a long time.

After my first back surgery in 2000, I noticed a strange sensation in one of my feet, like a string wrapped around my toe. Post-surgical, everyone said. It will resolve.

It did not resolve.

I had an anterior and posterior spinal fusion in 2004. Super successful surgery, but nothing is forever. It has been 22 years since the fusion. A deconditioned body + age + an angry nervous system = a whole special kind of back pain. By this time, both feet were feeling weird.

Over the following decades, that sensation progressed, worsened, and spread. By February 2020, when I finally had a skin punch biopsy, my toes were completely numb. The results: extremely severe Small Fiber Neuropathy. A condition that had been destroying my small nerve fibers for approximately 26 years.

I am turning 55 in August. Do the math. My body knew long before medicine was willing to listen.

That gap — between what my body knew and what medicine was willing to acknowledge — is the definition of medical gaslighting.

The part where medical gaslighting caught up with me

My most acute symptoms began in 2019. And I want to be honest about this: I genuinely thought I was having a major mental health crisis. The symptoms were bizarre, overlapping, and did not fit any pattern I recognized. I had never heard of dysautonomia. Neither had most of the doctors I saw.

I thought I was losing my last good marble.

What followed were years of medical gaslighting, feeling frustrated, dismissed, and not believed. I had a neurologist who looked at my very real, very measurable neurological symptoms and suggested they were functional — meaning in my head. He tried to hand me a Functional Neurological Disorder diagnosis instead of answers.

To be clear, FND is a real and recognized condition. For me, in that moment, it felt like being handed an explanation designed to end the conversation rather than continue it.

I asked him to refer me to a neuro-gastroenterologist. He said he would, then ignored my request. My pcp referred me to a neuro-gastroenterologist. I was scheduled for a gastric emptying study.

The Results

Gastric emptying was:

1 hr: 0%

2 hrs: 4%

4 hrs: 13%

According to accepted international standards using this technique, median normal values for emptying are:

31% at 1 hr, 76% at 2 hrs, and 99% at 4 hours.

5th percentile values for emptying are:

10% at 1 hr, 40% at 2 hrs, and 90% at 4 hours.

IMPRESSION: Gastric emptying study demonstrates abnormally delayed gastric emptying, as defined by emptying less than 90% at four hours.

My neuro-GI took the time to look at the whole picture. She listened to me. She investigated and ordered tests. I was properly diagnosed with gastroparesis two years ago. The cause of the gastroparesis: autonomic dysfunction.

Unfortunately, the gaslighting neurologist wouldn’t be the first one to be ousted from my care team.

If you take anything away from your visit here, let it be this: be your own advocate. I quickly learned no one else would do it for me. You must speak up for yourself.

The full picture, since we’re here

Here is what we know now, for those keeping score:

Dysautonomia. POTS. Severe Small Fiber Neuropathy affects my feet, legs, hands, and every system with small nerves. Gastroparesis, meaning my stomach quit and has refused to work again.

My gallbladder, mortally wounded by nerve damage, was removed in April 2020. Chronic kidney disease. Chronic edema. Autoimmune urticaria that is untreatable, constant, and itchy beyond description. Degenerative Disc Disease.

A still unnamed sleep disorder that has given me the ever-so-youthful title of “Fall Risk” and left me maimed on more than 10 occasions. Brain fog that has so completely disrupted my cognitive function, memory, attention, and concentration that it deserves its own special mention.

Oh. And two micro hemorrhages in my left cerebellum, monitored, cause unknown, nobody seems overly concerned. Just a wee bit of blood. No big deal.

I call it my dome’s slow leak. We’ve made peace.

And driving the entire enterprise: a seronegative autoimmune process. Cause unknown. Type unidentified. My immune system is attacking me. I really do not know what I did to offend it.

I do know this: my body despises me.

Before all of this, I was a senior administrative assistant. A multitasker, organized, dependable. I was the person people came to for help. I held complex situations together.

That version of me never saw this coming.

None of us really does.

So why this blog?

Salt, Spoons, and Syncope is for people who know what it’s like to cancel plans they were already lying down for. It’s for those of us who have a favorite waiting room. It’s for the person googling symptoms at 2:00 a.m., wondering if they were losing their mind.

You’re not. You never were.

And it is especially for those of us who have explained our medical conditions so many times that we’ve started leaving parts out because it is exhausting.

The humor here is real. So is the grief. And so is the rage at medical gaslighting that told too many of us, for too long, that we were imagining it.

No inspirational spin. No toxic positivity.

Just the truth, a dark joke when needed, and the hard-won knowledge that comes from surviving a body that has been trying to fire me for decades.

If that sounds like your kind of place — welcome!

💜 Lyn

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