(written on the 25th from notes taken yesterday)
I was grateful to be undisturbed last night, and I slept decently well for the time that I was in the Maverick parking lot.
As usual, I headed right up Provo Canyon to my little parking spot next to Slide Canyon. 😊
I was concerned to find that the numbness in my leg has continued without getting any better. I keep going to bed hoping that when I wake up in the morning, I’ll be back to normal.
I’m starting to get more worried about it. 😕
From what I understand, the longer a nerve is compressed, the harder it is for the nerve to heal.
I was supposed to have taken time yesterday to call local urgent cares to see if any of them had ultrasound machines, just to be able to rule out deep vein thrombosis, but I didn’t do that, as at this point, I’m pretty confident that I don’t even need a doctor to rule out deep vein thrombosis from the long plane rides. I can change the sensations in my legs, including the numb parts by changing my position. If I sit down, the numbness goes from just straight numbness to the prickly tingles of what I’ve often described as my leg (or other appendage going to sleep). Similar sensations happen if I squat with my calves pressed up against my hamstrings.
Numbness, prickly tingling, even temperature change sensations… all those make it pretty clear: It’s just another manifestation of my ongoing nerve issues.
Accordingly, instead of looking for an urgent care, which is pretty much guaranteed to be able to do nothing other than give a referral to a specialist, I needed to make an appointment with a specialist to see what might be able to be done.
This is the first time that I haven’t ever been able to get rid of a symptom. Heretofore, I could always get rid of a symptom by changing positions. Sure, I don’t really have any positions that have no symptoms. I think floating in water is the only thing that I can do to be completely symptom-free. But I could at least adjust positions and change the symptoms from one type of pain or discomfort to a different one.
Nothing I do changes this one though… I mean yes, I can make it tingle and prickle instead of just being straight up numb, but it’s still the same place, and it’s still basically the same issue, and the numbness never fully goes away, even when it’s tingling and prickling.
Finding I had the strength to make the effort (a bit of a surprise on its own given my overwhelming lack of confidence in medical professionals anywhere but in line with the dramatic shift that happened for me on Sunday), I went to log into my health insurance doctor portal.
And that’s where the first obstacle showed up.
My health insurance (I guess I should probably call it a health-sharing ministry because it’s not actual insurance) uses a third-party system to help you find doctors in your area that accept my particular ministry’s coverage.
Well, the organization that runs the portal is one of those places that automatically requires you to change your password every x amount of time.
I don’t like those places. 😒
It’s also one of those places that has really rigid requirements for what your password must be, with something like eight different rules.
😒
I have a particular way of creating passwords, and these types of requirements significantly disrupt my conventions, which means I’m a lot less likely to remember the password, which means it’s significantly likely that every time I go to log in, I’m going to have to go through the forgot password routine because I never keep my passwords written down anywhere, as I find that to be a significant security risk.
Anyway, so I fought through that, having to try several different passwords before there was one they were willing to accept, which, of course, turned out to be some stupid random combination of letters numbers and symbols that mean nothing to me.
I’ll never remember them. I’ve already forgotten. 😅
Once in the portal, I found that even 6 months later, they still haven’t fixed what makes the portal pretty much useless: the filters don’t work.
You choose a zip code and then a filter range of within 50 miles of that zip code… For example, I chose a zip code in the Salt Lake Valley and did a search for all neurologists within 50 miles.
One result.
One.
I think that’s when I realized the system was still broken. 😒
What did I do next? I did the same thing I had to do 6 months ago, I started zip code hopping. I picked one in Provo, used the same 50 mile radius, and what did I find? Boom, a whole bunch of neurologists popped up in Salt Lake City!
😶
It’s absolutely ridiculous. It leaves you with absolutely zero confidence that your search is actually finding all the available neurologists, so you don’t know if the best neurologists are even showing up in the search results, because you happened to choose the wrong zip code even though every single one of them is within the 50 mile radius.
I mean how crazy is it that I have to choose a zip code outside of Salt Lake City to get results in Salt Lake City?
Not to mention the fact that every single doctor that I’ve ever found on the search results that’s listed as being willing to accept my ministries coverage requirements 100% has not accepted my ministry’s coverage–at all.
Which basically means the entire search portal is absolutely useless because it’s a it’s a nightmare finding doctors, and even once you find them, doctors, and even once you find them, despite the fact that they’re listed as being 100% willing, you have to call every single one because they actually aren’t.
Which causes the circumstances that I was in last time where I assumed that because they were listed in my patient portal as a provider that accepted my coverage, they actually didn’t.
And I drove all the way from South Dakota to find that out.
Anyway, that was really discouraging to realize this morning. I need to get a new insurance. I was going to do it before I left New Zealand, but I just didn’t have the bandwidth; and I wanted something while I was in New Zealand.
After a fair bit of frustration, I headed down the canyon to find a place where I could hang on something and hopefully decompress my spine enough to remove the compression causing the numbness in my leg.
On the drive down the canyon, I decided to stop off at Timpanogos Park. There’s a jungle gym for kids there with monkey bars, so I hung there for a little while. Unfortunately, I’m not strong enough to hold on for a very long time, so after maybe a minute or so, I have to let go, which stops the decompressing.
So I looked around the jungle gym to see if I could find a place where I could hang upside down with my legs on a flat surface, and eventually I found one that was tall enough for my head to not hit the ground– one of the platforms on the way up to the little slide.
Funny enough, I didn’t realize how much energy it was going to take to hold myself in that position, and I was only able to hold that position for about a minute as well. 😅
With all the struggles with insurance and finding a provider, and with zero improvement in my attempts to decompress my spine, though my resilience has been a fair bit stronger since my little switch flipped on Sunday , it’s still quite weak, and everything going on right now frayed my riddle what little resilience I had until I melted down–blaming God and losing my voice a little bit in the process. 😕
Even worse, my poor mom was on the phone with me as I melted down. 😞
Gratefully, though I know it’s painful and difficult for her to see me that way, she has the emotional resilience to be able to stay with me through it.
Thx, Mama. 🤍🙏🤍
It’s so easy for me, in that hopeless state, to go to that place, to blame God. It just feels so cruel… I’ve been drowning for so long, and I finally have the courage to battle through and turn back, and face the PTSD (lite) feelings, and give life and God and everything another try, and more health problems is the reward?!?!
I’ve been drowning as it is and barely managed, with the miraculously arriving strength, to get my head above water, and now this?!?!
(I acknowledge, now, that what happened for me on Sunday didn’t really feel like my strength. It was like a switch inside of me flipped, and suddenly I had strength that I hadn’t had for several months, but in the moment today, all I could see was a new challenge when I’d only just barely caught a breath, and it felt so cruel.
Having lived the last many months with next-to-zero resilience, doubling over like tall grass at even the most gentle breeze, I think I felt entitled to have the challenges in my life at least remain static until I had enough resilience built back up to be able to handle them at least a semblance of grace before new or heavier challenges were piled on.
But instead of being granted a stay of additional challenges until I was ready to handle them, it felt like before I had even been able to gain any meaningful strength, or perhaps to use my first analogy, just as my head had finally made its way above water, so I could take a breath, here was this new problem, this new concern, this new stress (the additional symptom), and in my mentally, emotionally, and spiritually weak state, it just felt like I was getting my head shoved right back underwater after barely being able to catch a single breath.
And I melted down, blaming and cursing God until my voice (rather quickly), started to go.
Fortunately, I was able to gain control of myself relatively rapidly, making my way over to Discovery Park in Pleasant Grove.
Once at Discovery Park, I grabbed my magic marker and spent a little time trying to trace an outline around the numb patch on my leg to be able to take a picture and get a better idea as to which nerves might control that particular area.
I was a little surprised at how long it took to figure out what parts were numb and what parts weren’t. One would think that it would be fairly simple. 🙃
But the numbness was actually more of a spectrum. Parts of my leg, specifically the skin on my ankle bone were pretty much completely numb to the touch, whereas other parts were only partially numb, so it was a bit of a challenge trying to figure out where partial numbness ended and full sensitivity began.
In the end, I managed to get at least a decently accurate outline, which I then sent to my mom as a short video clip, asking if maybe she could help me identify which nerves were affecting the area.
I had done a little searching on my own, images and using AI, and it was fairly helpful. The biggest help that I got was working with my mom to better understand how nerves actually work so I could make logical sense of why a particular patch of skin could be numb and not everything down the line from the exact location of the original pinch.
You guys all probably already know, but if I’m understanding correctly, nerves are located in bundles, kind of like twizzlers pull and peel candy, lots of little strands together. I’m sure there’s probably a better example than that, but that’s what comes to mind. 🙃
Each strand of the bundle could be thought of as the trunk of a tree, and once you follow the trunk, you hit the branches (or the roots if you go the other direction), and it’s the branches where the sensation is picked up. The strands of the bundle don’t produce any sensation. They just carried the messages. The branches pick up the sensation and transmit that information through the strands that eventually make it into the spinal cord and up into the brain.
So the large patch of numbness on my leg was being caused particular strands of the bundle being compressed. In my particular case, a patch that looks like this:
That particular patch of skin from just below my knee in the front wrapping around down toward my ankle is controlled by nerve strands passing through the L4 and L5 vertebrae.
So I need to figure out spinal decompression if I’m going to get this resolved. And whatever resolves this, might well resolve my other issues as well, as most of my nerve issues I think are caused by issues starting in L4 and going down to S1.
Pudendal neuralgia surgery is brutal, though. If I’m remembering correctly from my research somewhere around 20 years ago, after surgery, you might not be able to sit down for 8 months.
With a couple of decades having passed, maybe they’ve got better procedures than they used to. I suppose I could look it back up again.
Anyway, being able to start actually understanding what was going on today helped my stress level go down significantly and even gave me a little bit of hope.
I have no faith in doctors. Not even an ounce. You get 1 to 5 minutes to share decades of history, you pay hundreds of dollars for those few minutes, and at the end, the doctor gives an educated guess.
😶
I wish medicine were a results-based compensation profession. If you get the wrong diagnosis, you can’t charge.
I also wish there were more flexibility in the medical education sphere, fewer government requirements, such that there wasn’t such a massive barrier to entry for becoming a doctor. We could significantly bring medical costs down and allow more people to become doctors, which would also significantly reduce wait times.
[sigh]
One potential health bright side, which I wonder if might have actually caused the issue I’m dealing with right now?
I don’t think I’ve mentioned it in any of my posts, but the issues with my spine had gotten to the point where I couldn’t lean back, such as if you were looking at the stars, and then you just keep leaning back further, without some pretty good pain in my low back. Neither could I simply turn my shoulders to look behind me without a fairly decent amount of pain.
Remembering a friend I had in Arkansas who had a medical condition where his bones just kept growing a little nubs on them, and periodically he would have to just force himself into positions hard enough to break the little bony nubs off, so he could have freedom of movement again (a requirement that was absolutely excruciating, but then would at least allow him to have at least a somewhat decent amount of freedom of movement) thought about trying the same thing.
So I forced my body to twist even when it hurt, both directions, which generally isn’t good for bulging discs, and I forced my back backwards. I think on one of the twists, I felt a pretty significant pop and movement in my lumbar spine.
I think I did that maybe my last day in New Zealand? Maybe in one of the airports? I don’t remember for sure. But I’ve noticed over the last couple of days that when I stand up from sitting in the grass, what would normally be pretty painful movement simply of standing up and straightening out was significantly less painful than usual. I also noticed that twisting was nowhere near as painful as usual.
I’m wondering if maybe the same movements that freed up my lower spine to be able to move without as much pain might have also been what caused the change in compression which caused the numbness.
🤔
🤷
During my conversation with my mom, my takeaways were the following:
- Buy ibuprofen.
- Make an appointment with my spine surgeon in Arkansas.
- Look into seeing what a chiropractor might be able to do for me (giving myself chiropractor work seemed to relieve some symptoms while possibly causing others)
- Look into what nerve glide techniques I’ve heard about that I can use to try and free up the nerves in L4 and L5.
There might have been a fifth thing, but I’m not remembering…
From Discovery Park, I went to the Walmart in Cedar Hills, buying food so I had something other than just a bag of tortillas. I also bought some ibuprofen while chatting a bit with my sister Heather.
Remembering that the little park at the entrance to American Fork Canyon, one of my little happy places from many years ago, once again had water flowing through it, I decided to stop over for lunch. First, I picked up a bunch of trash, and then spread my food out on the table and ate while trying to journal a little bit.
Nice to be there. Hear the sound is a little stream running through. Part of me wishes it was still relatively unknown like it was when I first found it, an old abandoned place, overgrown, with no walking bridge going across the creek.
But truthfully, it’s much more appealing with nice picnic tables and a fire pit and benches and what not. It’s a beautiful little place to spend time, and if you’re close enough to the water, the sound of the nearby highway isn’t too bad.
Unfortunately, after a lovely little lunch in the shade by the brook, I needed a bathroom. I didn’t think that was much of an issue at all because the park has a bathroom at the end of the parking lot.
Eeeeeexcept it was locked, and I really needed to go. 😅
With little John not set up for use yet, I ended up rushing over to the Macey’s in Highland, barely making it in time. 😅
I had arranged with Corey to meet at his place about 6:30 to pick up some stuff he had been hanging on to for me while I was in New Zealand.
Despite traffic (there was an accident), I arrived a little early, so I hung out in the church parking lot next to his house before heading over. He helped me load up my van with the stuff I’d left there, and then we just talked for a good while.
Love Cory.
He had to go back to his mom’s house to make sure she was okay, so I followed him over, and we hung out and chatted for a good little while longer. I also had a longer text conversation with my friend Robyn whom I hadn’t spoken with in a good long time.
Good stuff.
Really having trouble maintaining my journal. I’ve been super exhausted here. I haven’t really had much in the way of sleep since I got back to the States, including very little sleep on the long trip here.
After veging out a little bit (avoiding the more destructive escapes), I crashed for the night, feeling a lot better after making at least some progress and figuring out my issues.
Really grateful for how much information is available for those who are willing to do the work of finding it. Also very grateful for the speed at which AI is able to increase the acquisition of desired knowledge. Certainly, I need to be careful, because AI makes mistakes all the time, but it’s so useful. 🙏
Lift the world.
Bring it on.
~ stephen
Lift the World 