08/27/2026
I’m not a doctor, nurse, or licensed healthcare professional.
I’m a 44-year-old woman with hEDS/hypermobility, POTS/dysautonomia, psoriatic arthritis, spinal and neurological problems, chronic pain, GI/motility problems, and a body that currently requires specialists, tests, injections, procedures and physical therapy.
I'm also getting divorced, selling my dream home and farm, and living in an 800–900 sq. ft. duplex while most weeks involve one or two medical appointments or tests.
Then add driving. Parking decks. Insurance. Referrals. Records. Imaging discs. Phone calls. PT. Injections.
And apparently, add film crew.
My phone used to be full of my flowers, sheep, chickens, gardens, hunting, fishing and the gym.
Now I sometimes have to scroll through picture after picture and video after video of my own body just to find a photograph that has nothing to do with being sick.
Because symptoms don't always perform on command during an appointment. So you learn to film the spasm. Photograph the swelling. Record the color change. Save the report. Get the disc. Build the binder.
And then somehow you're told not to let illness consume you.
How could it not consume part of your life when documenting it has practically become another job?
My neck surgery alone took about a year of referrals, therapy, records, imaging, DVDs, specialists and coordinating parts of my own care.
These days I can walk into an appointment carrying a 30–40 lb backpack of medical information because I've learned from my own experience what can happen when the information isn't there.
And eventually you hear the word “complex.”
Sometimes I wish we'd just say what we mean: some patients have multiple legitimate, co-occurring medical conditions. Human bodies don't organize themselves according to specialty departments.
**And please understand what chronic pain, four hours of sleep, financial pressure, constant appointments and years of uncertainty can do to someone's mental health.
Anxiety and depression deserve care too—but distress can also be the result of living through illness, not an automatic explanation for every physical symptom.
Last year my life looked very different. I had a flock of about 15 sheep, including ewes with their lambs.
When something was wrong with a baby, a ewe could come running to me, grab my shirt and lead me straight to where she needed me.
We didn't speak the same language. We weren't even the same species.
But I believed her.
I didn't demand that she prove something was wrong before I followed her.
There was even a time I couldn't reach a dying lamb quickly enough because my own legs wouldn't work. I remember being on the ground trying to get to him and praying to God that I would make it in time.
Maybe that's why I still believe medicine should look a little more like shepherding.
Listen when something in your care tells you something has changed. Pay attention. Investigate.
!!And understand that vulnerability creates responsibility.
This isn't me bashing healthcare workers.
I've met some wonderful ones. In my opinion, many providers are being crushed by the same system patients are struggling to navigate: understaffing, paperwork, productivity demands, burnout and another patient already waiting.
☆I want providers protected too.☆
Because healthcare cannot sustainably operate like an assembly line and still expect either side of the exam-room door to come out okay.
*I'm not posting these videos for pity.
* I'm not looking for another speech about being strong.
!!!!!I want awareness!!!!!
Patients shouldn't have to become their own medical-records department, care coordinator, case manager and film crew just to demonstrate what's happening to their bodies.
These videos aren't content to me.
They're work I wish I didn't have to do.
And tonight, I would really rather just be asleep.
