Hard copies...

I recently received my routine bone density test results with an incorrect summary conclusion. 

Had I not done some digging prompted by what appeared to be (and ended up being) an error, would we have caught the mistake? 

Maybe, maybe not...

I do not know if the error was Pattern Engine (aka Artificial Intelligence) generated or a human error in data entry or calculation.

May we not dismiss our questions when a result or conclusion looks, feels, presents like it may be askew. 

But neither does that mean we should dismiss test results or conclusions... 

However, to quote Audubon:  "When the bird and the book disagree, ... believe the bird." 

~*~

My phone rings. It's my General Practitioner's office. 

Oh, this must be about my bone density test results. They must be worse. Dr. GP has told me that if any test result ever shows "bad" news, the office will call me before releasing the results via my portal...

I answer the phone.

"Hey Mrs. Welch. This is Nurse from Dr. GP's office. How are you today?"

"I'm doing okay, thank you." 

"I'm calling about your bone density results. They show that you now have osteoporosis. Dr. GP wanted to check about your Boniva; she's pretty sure you aren't taking it anymore?"

"That is correct. I think my last dose was sometime in 2023, maybe? I dropped it because my jaws had worsened, shifting more. And because jawbone loss is s side effect, I got spooked and wanted to experiment."

"Okay. Maybe you could try Fosamax or another medicine."

"Maybe. I'll talk about it with Dr. GP at my appointment next week."

"Yes. That works. Thank you. I hope you have a great day."

"Thank you. And the same to you."

After the call I think... 

Seems I tried Fosamax and experienced a side effect.,,, 

But lord, I can't remember what the side effect was.... 

Maybe Dr. GP has it in her notes...

Later that day I log into my portal to view my test results. My eyes immediately go to the bottom conclusion statement under my "proximal femur" results which reads, "Comparison: Decrease of 5.7% compared to 6/6/2023." 

Then I remember, Oh yeah. It wasn't just because of my jaw that I dropped Boniva... Since I was no longer receiving steroid epidurals and trigger point injections, I thought maybe I'd improved...

[I received my last steroid injections in 2022, after receiving them every six weeks since around January 2014. Bone loss is a typical side effect of long-term and/or high-dose steroids.]

My eyes wonder up to the top of the page which states, "IMPRESSION: 1) Osteopenia/low bone mass..."

What??

I wonder why Dr. GP's office said, "Osteoporosis?"
I bet she just saw that bottom line and did a quick surmisal that logically I had gotten worse. That's understandable. Or maybe the nurse simply misspoke...

Regardless, it's nice to see that I'm still in the osteopenia stage and not osteoporosis... 

~*~

Per my normal mode of operation, I pull up my 2023 results and compare them with 2025.

Oh my gosh. I've improved in three scores and held steady at one score. 

[Two scores for "lumbar spine" and two scores for right "proximal femur."] 

How can there be a decrease when I've improved and held steady?

Over the following week, I do some digging into my hard-copy paper files. I find a file, "Bone Density," which contains hard copies of my bone density tests going back to 2013. And I find notes I'd typed back in 2017 with the side effects listed when I tried the Fosamax and then Actonel. I check my computer, but those notes are no longer in my computer. 

Oh wow. This is great. I'm so glad I keep all these notes and have hard copies... 

My notes have paid off more than once... 

I gather this information and design a bone-density, at-a-glance chart. I include some history notes for contexts. I don't expect anyone, including my medical practitioners, to be able to remember all the details and repercussions of this wild ride with polyradiculitis. 

I also type a question on my chart as to how can that summary conclusion be correct when three scores have improved and one has held steady. Should it state "Increase" instead of "Decrease?" Or should the "2023" state "2014?" The 2025 lumbar tests state they are compared to 2014. My 2023 results state both femur and lumbar are compared to 2014. And my decrease comparing 2025 to 2014 shows improvement when compared with my 2023 to 2014 scores.

As I am putting this all together over the following week, I feel some anxiety...

Will this be the last straw with my GP? What if she drops me for non-compliance? 

She and I have been through these types of conversations before -- my refusal to get vaccines, taking myself off of blood thinners, taking myself off of Boniva...

I navigate this jungle gym of thoughts and worries... 

My health history is so complicated; I have no desire to find a new GP.

What if Dr. GP insists that I go back on a bone-building drug? 

I just can't do that now. 

My 2025 test results have improved from 2023, and 2023 improved from 2021. 

I'm biking again after an over-28-month, forced hiatus and am doing so without intervention from increased steroids; that's huge. Really, really, really huge...

I do not want to interrupt this trend by reintroducing a drug into my system. 

I journal. I think through how I will respond if GP tells me she can no longer see me as a patient, and I journal my possible responses.

As I'm journaling possible responses, I think...

Gosh. This reminds me of when I officially left The Way. I thought of every angle that leadership might respond with and wrote out my responses to those possible statements/questions. And the leadership responded almost exactly as I had predicted in my journal. But I was prepared. That's all I'm doing here, preparing. If GP drops me, I can use Dr. Neurologist until I find a new GP...

I accept the possibility of having to find another doctor.

 

Then, the night before my appointment I reread a blog post I'd written in 2013 about being an advocate for my own health. I didn't search for the post; I just clicked on a link of what a visitor had read on my blog the day before, and "Voila!",,,

After rereading it and the comments, I feel grounded and at peace... 

(The link: I shall rise... two, too, to...)

~*~

With my notes in good, easy-to-read, user-friendly order, I go to my appointment. Nurse checks my vitals, we chat a moment, and I give her my notes. She asks if it's okay for a student to be with the doctor for my appointment. This is also something I'd thought through; I respond that a student being present is fine. 

A few minutes later, Dr. GP walks in with my notes in hand... 

"You are correct. That concluding statement is an error. I think it should probably read '2014' instead of '2023.' I agree that right now, let's not reintroduce any medication..."

We have a very pleasant visit...

~*~

Again, to quote Audubon:  "When the bird and the book disagree, ... believe the bird." 

And I'll add, "Especially the canaries in the coal mines..."

~*~

What souls do...

 Will I click "Publish" without first polishing?

Craft. Polish. Publish.

Do not all humans engage in such? 

Well, except on X-Twitter maybe; or any social media where one chooses to hide behind an anonymous persona used to blast out their rage or whatever else they want to blast while hiding in plain sight.

But it's not really anonymous; there is a soul behind, underneath, within, around the words and letters and punctuation. 

That is, unless the persona is of a Pattern Engine. 

The Pattern Engine (aka Artificial Intelligence) does not have a soul with emotions, feelings, doubts, beliefs, neurotransmitters, and five-plus senses...

~*~

I listened as my good friend opened up about their challenges. I felt a deep sense of pointlessness as my friend shared one disappointment after another, decades of it. As they spoke, the title of a song came to mind - A Man of Constant Sorrow. 

My heart hurt for my friend; I have lived a life of pointlessness-feeling for over a decade now. 

I have written of it often. 

"Does anything bring you a sense of awe? A sense of joy?" I asked.

"Nature," my friend responded. "When I look at the sky on my job-commute, I am in awe. The trees, the clouds, the sun, the moon. The moon grounds me..."

As they spoke of this awe, I heard and felt a change in their tone.

My friend felt lighter after sharing their burden, and we both felt more connected. 

This is what souls do. 

~*~

One of the topics from our conversation was about how details matter and that noticing them matters. 

 

Upon waking the morning after our conversation, my first-recognized thought was an image of the word "pointlessness."

Then I thought, "A synonym of pointless is dull." 

Immediately I pictured a pencil with a dull lead and a pencil with a sharp lead and the strokes each makes upon the paper -- one sharp and clear, the other a bit fuzzy.

Then, my mind recalled a dream from my sleep state: the friend and I built back a bicycle whose parts had been scattered.

Then the thought, "Dullness is unclear, foggy. There is a lack of detail."

Then, " Ah, why bother with details; what's the point?"

Thus, I realized this connection between this feeling of pointlessness and a lack of attention to detail. Why care about the details when there is no point? 

Writing that out now seems simpletonish. 

On the other hand, I recognize a kernel of truth.

A few weeks ago, I thought about maybe writing a series of what a day is like for me, the nitty-gritty details. My immediate thought after pondering it for a moment was, "Boy, that'd be boring." 

And then, "But that's the point." 

Meaning the mundanity of the same tasks, day-in and day-out; tasks that cannot be skipped if I am to remain mobile in some capacity.

Part of what inspired this idea was rereading the book Endurance: Shackleton's Incredible Voyage by Alfred Lansing. It was my third time reading it, and I'll probably read it again someday. Obviously, it is one of my all-time favorite books. But this time, Hubby and I read it aloud to each other. It was Hubby's first time reading it. We both agree that the intimate details are what bring the book so poignantly to life. 

Could I do the same with writing about disabled life? 

If I follow through on the series, I feel like I would be inviting people into the reality of the disabled. And that is, at least part of, my heart/intent. It's not just about Carol, but all those who navigate the details of disability and caregiving; both involve a labor of love.

That's what souls do...

~*~

I'm able to ride my bike again...

My first ride back in the saddle in over 28 months was on August 30, 2025. 

I've now logged 137.45 miles; 4.11 of those on my stationary, indoor trainer.

I would have more miles logged, but I was without a bike for three weeks.

The cold weather is beginning now, so I won't be able to ride as much.

But there is more pointfulness to riding my indoor trainer; if I'm alive come spring and still progressing in my ability to function, I can once again pedal outdoors.

That helps give me motivation.

This is what souls do...

~*~

New River Trail at Fries Junction, 10/13/25

The feel of fabric...

My full-time job is a caregiver to myself. 

I often have to remind myself that I am serving others by caring for myself. 

I serve my husband and my family and thus society. 

~*~

From mid-October 2024 through early-March 2025, I was mostly homebound. 

The isolation felt worse than previous years.

It felt harder, courser, narrower, more confined, the feeling of pointlessness magnified. 

But was it actually worse? 

Perhaps it feels worse at the moment because this season is less chronologically distant than past seasons; out-of-sight, out-of-mind type thing. 

Perhaps it feels worse because of the accumulation-effect; as isolation year-in and year-out piles up, the weight increases into a heavier burden. 

(Hm... there's some nuggets in there regarding lessons on integrating life experiences, allowing them passage and flow, not resisting when certain memories arise via feeling and/or mental images, and then approaching their resurrection with curiosity and questions; in other words, treating these aroused memories with respect.)

Some folks may respond with something like, "Well, being homebound is a good time to get some things accomplished at home." I agree, except when the person is literally not able to cook or to clean or to organize and when their fulltime job is selfcare. 

It can feel very isolating, especially with a rare disease that most are not familiar with.

Folks living with a chronic illness/disability know isolation well, both physically and emotionally.

But have not all sentient beings experienced feelings of isolation?

Is not isolation part of the fabric of life? 

Interesting phrase, "fabric of life." 

Fabric touches our tactile sense; when we are physically comfortable, we usually aren't consciously aware of this fabric-touch upon our skins. 

If isolation is a part of that fabric, what are some other parts?  

Oddly perhaps, I'm actually feeling thankful for the experiences this season.

As I've witnessed the repercussions and stepping into the now, I find it interesting.

It's like, I'm looking back at the past six-plus months as a different person, maybe?

What did I learn from my (mostly homebound) isolation this round?

My brain suffered. 

Regularly, there were times when I felt like I had holes in my brain, like my brain lacked substance. Memory function worsened. 

This observation-feeling was different than the feelings of brain-fog or brain-mud. 

You mean, "Less substance than fog?"

Yes, it was like more of a void; thus, lack of substance. 

I'd find myself concerned; I should talk to Dr. Neurologist about this. But I'll wait until my next appointment.

As I pondered this lack of substance in my brain along with some habits I had (understandably) fallen into, I had a kind of aha-moment. 

By the time my next appointment came around, I'd already experienced this 'aha' moment, and I shared my observations with my neurologist (of 11 years) as he listened and nodded his head. 

What were these habits?

I had fallen into too much time on my phone, reading. 

And too much time watching TV, which to me isn't as bad as the cell phone; but still, it's a screen. 

I enjoy the essays I read from my phone, but this tiny screen shrinks my world, shrinks my feeling of being present in the material realm. 

So, in March (after getting my printer to work properly.; yay me!), I started printing the essays. 

I also started reading more from books and reading less X-Twitter posts.

X-Twitter is the only social media platform I use, unless one counts my blogs as a "social media platform." 

I will sometimes post and reply on X, but I seldom engage in back-and-forth dialog. 

This is true in my 3D life as well; engaging takes precious energy. 

When I do engage, I prefer face-to-face, then phone or Zoom conversations, then digital text communication. 

I find digital texts (which includes email) laborious. 

Since making this change from digital screen to material paper, I've noticed a significant shift...

My brain no longer feels like it has holes in it...

My memory function has improved...

Are there other factors for these changes?

Yes, one being confined inside walls.

Humans, like other animals, are not designed to live inside walls of confinement. 

When a person is isolated indoors, their world shrinks.

Not only that, but their eyesight is also stymied; it stops at the walls.

I started raising the window blinds so I can see outside when I perform my Synergetic exercises, a type of westernized tai chi. 

As I move and sway my body, I am looking at a tree with a big rock beside it. 

I often witness the scamper of a squirrel or a songbird perched on the rock or on a limb.

This helps to make life just a little larger. 

I watched part of a documentary about prisoners who had spent decades in solitary confinement. 

No, my isolation can barely be compared to solitary confinement, and for decades? What torture.

Anyway, as the prisoners shared about the effect of SC and how they found ways to engage their bodies and brains, I could relate. 

The monotony is maddening, and it takes fortitude & endurance to keep on doing whatever one finds to do with such limited choices.

~*~

Transferring my reading from my little SE iPhone screen to paper. it feels like I can see the context more clearly, larger, more expansive.

Symbols on a physical piece of paper that one's fingers touch delicately (though not really conscious of that fact) so that the paper doesn't tear. 

A crinkle sound may enter my physical sense of hearing (again, not really being aware of that fact). 

These symbols on physical paper -- letters that turn into words that paint pictures -- seem to have more substance than symbols on a digital screen.

Is this true for others too?

If so, it seems that would fall into some anecdotal evidence of one effect of digital screens on the brain, on consciousness, on humanness...