Maybe it’s permanent. Grounding that is.

I suppose it’s time for an update.

Neuro symptoms started very very slowly going the negative direction after the end of the steroid treatment.

Other side effects have waned nearly completely from the steroids. Still checking blood glucose but it’s completely normal behavior from what I’m seeing. Been off the diabetes drug months now.

So, the likelihood I’m in the 40% who need a immune suppressive maintenance drug plus or minus a light dose of steroids appears likely.

Going to (finally) go see the nice folks at Mayo again in April. They were slammed in March (especially the neurologist) so schedule shuffling was done and we finally got to a schedule everybody liked.

Some insurance paperwork silliness currently ongoing. What’s new. Change of company managing the plan but no change to the plan itself, just a new pile of computer database checkboxes run by non-medical people to check off to make the new bean counters happy.

Saw some mild signs of adrenal issues coming off the steroids. Also very common. Will see if they want to do the challenge tests while I’m visiting MN. Also would like them to get off the dime and decide or test the apnea thing and get that over with one way or another.

Between the diabetic reaction to the steroids and just eating better at home during Covid I’ve lost 42 lbs. I have no real complaints about that.

Good stuff: My lower back hurts at times. Why good? It was numb for a year. Still walkin’.

Bad stuff: My lower back hurts. LOL. All Neuro symptoms that nearly disappeared on high steroids are all very very slowly creeping back. I assume they’ll find spinal inflammation increased since the last imagery. Since we have a gap in the imagery it may have been increasing at the “wow that’s a lot better stage” actually. Hard to say.

My best guess is we’ll discuss that things are slipping, find evidence that sarc didn’t want to go into full “remission” and we’ll do round two of steroids and then a quicker switch to a designer drug like methotrexate like the neuro said a year ago. She’s pretty sharp. She said two years...

Which leads to my “duh” moment.

How do you figure out if a sarcoidosis patient is acute and one round of steroids knocks it down forever / years?

Take them off the drug and see if they go backward.

Duhhhhh.

I hadn’t thought of it that way, of course.

So while I was mentally prepped for a lifetime treatment, I forgot how you figure that out. Ha. Yup. Have to go a bit backward to find out.

So... likely in for a slightly tweaked new set of treatment orders and another year of messing around. But I’ll take it if we can get back to how it was doing thru about say... Oct/Nov?

Round two... ding ding. And the joy of new paperwork to mark the ringing of that bell. LOL.

Not super looking forward to high steroids again if they need a round of that to start this process. The side effects are a pain in the butt. But it is what it is. Neuro still gets priority over the side effects. Well they try to balance it but it takes some time to figure it out.

Traipsing off to Minnesota again. Should be a little warmer there this time.

Other oddities I’ll be having discussions about during my annual... LOL... left side flank pain mostly at night. 90% of us sarc weirdos don’t process Vitamin D correctly so the stupid calcium supplements may have started kidney stones, or the adrenal system may be still totally ticked at the prednisone, or lord only knows what.

So I’m sure the vampires at Mayo will want lots of blood. Ha.

Crepitus. It’s way better off the steroids by a long shot — but holy cow do I crackle like a bowl of rice crispies still.

General tightness. Too many places to describe unless you’re a doc. LOL. Again, yay steroids.

Unless the paperwork goes massively haywire, I get my frequent flyer miles for another brain to hips MRI tube ride, another chest CT, and another pulmonary function test and then we see what other amusement rides Mayo books for me during my fun-filled stay at medical Disney. Ha.

Oh and the airplane got fixed. Finally. Leaking fuel strainer seal. Yay. And work is... well beyond crazy. Bit it’s nice to stay busy. I guess. Everything feels like a tad too much drama so that hints my adrenal system isn’t operating at full tilt. LOL. That or all this stuff has changed my perspective. Probably both! :)
 
Sounds like mostly positive news. Glad to still see you having a positive mindset.

Tim
 
The best part of this medical stuff is when it is resolved/stable and behind you, I hope you get to that point sooner rather than later. It does sound like a much better outlook now then when you first told us about it though. Praying for you.
 
PaulS said:
It does sound like a much better outlook now then when you first told us about it though. Praying for you.
Click to expand...

Definitely! And appreciate the intercession.

Covid just made the follow up get all sloppy. At least that part is fixable. Just push harder on calendar dates and follow ups.

Speaking of sloppy, the Docs forgot to monitor the wifey’s heart, knowing of her genetic disorder, so recently she started pushing on them to do some actual follow up... and tests, since she had a known leaky valve.

Surprise! She has an ascending aortic aneurysm. Spiffy.

At least there was a reason — without symptoms — to get imagery. It’s pretty big already.

Guess we are cardiologist shopping now. Ha. Sheesh.

Here’s hoping they can go thru a vein to add the new plumbing inside the bad pipe.

Modern imagery is both a blessing and curse. But more blessing than curse.

Of course now I can start the jokes...

“Now, now, dear... don’t get all riled up, you know raising your blood pressure isn’t good for you!”

Sure has been a wild couple of years. Apparently it’s not going to let up.

Who knew your late 40s could be so medically exciting?

Her pregnant co-worker had pre-eclampsia today and the Docs at her hospital said baby is coming out on Saturday. At least when you work at a hospital you walk across the parking lot to the ER. Haha.

Her boss’s granddaughter who was truly harmed by an ER paying more attention to her previous bout of Covid than her actual new symptoms (they completely missed encephalitis and sent her home) had good news that most of her paralysis has gone away, but she has some mild personality changes from what the ER did.

Grandpa is still pursuing legal options. Docs suing docs, good times. LOL. He’s really angry.

It’s been a medical drama week fo’ sho’.

We’re just a camera crew away from a new “reality TV” show I think. Hahaha.
 
So with what you've had, I know would probably be a long road to get your license back, but I was just wanting your personal thoughts on the process it if and when it happens.
 
denverpilot said:
Well Casa Bonita is likely closed for good, but I know you were looking forward to sketchy "Mexican" food and Black Bart's cave. Lol

Sent from my LM-G850 using Tapatalk
Click to expand...
On the website

Casa Bonita is re-opening soon!
Check back here for more information as it becomes available
 
BrianNC said:
So with what you've had, I know would probably be a long road to get your license back, but I was just wanting your personal thoughts on the process it if and when it happens.
Click to expand...

@bbchien has given wise counsel.

Hoop number one in ANY neuro issue with FAA is, “documented stable symptoms for at least one year”.

There’s a list after that for third class. Or the option is still there for BasicMed.

The hard part during Covid is that darn documentation. A video call notes ain’t gonna cut it.

But just working on flaming hoop number one for now. If the flames get too silly, BasicMed is the Cirrus ‘chute. LOL.

Technically I’m still legal to instruct as long as it’s someone else who can be PIC. Whether that’s wise from a business standpoint (insurance, etc...) is a whole different thing. So I don’t. I’m not big on losing Karen’s house to even a frivolous lawsuit.

Also having not finished the CFI-I, that’s the most likely student base I would have as an independent with the non-PIC limitation. Not a lot of folks wanting Commercial ratings in their own aircraft.

Last year I had a couple of folks ask me about Flight Reviews also and almost did them, was just a touch leery about it and opted out considering a lot of symptom changes were happening rapidly.

I also officially closed down the LLC last year. Seemed silly to do quarterly taxes and such (well, all $0 anyway) until we truly knew a path forward is available. Making a new one later is easy.

Once we get to that “stable symptoms” plateau I’ll feel a lot more confident about what I need to do to adapt in a cockpit. I know pilots with worse physical issues who are fully capable and legal to fly, so I’m not incredibly concerned about the physical stuff.

If I’m walking with mildly numb feet (relearn rudder pressures and such, I’ve been fine driving but did have to be cautious at first) and the right hand is mildly goofed (instructors sometimes — er, inevitably — need to hide that they’re guarding controls but be able to act quickly), it’s certainly possible to fly an airplane or even teach with those limitations.

Personal flying is well within the bounds of reality also, I feel.

That said, tackling primary students as a first step back would just be, unwise. Ha. (Hell, teaching primary students in general, is a touch unwise! Ha.)

I’ll formulate a specific plan for cockpit return when true symptom stability hits. And start deciding whether the fire hoops are worth it. My plan will be written and have my own personal hoops to jump thru. Current AND competent. Have CFI friends who can monitor me from either seat and beat away any bad habits that want to return after an extended hiatus. They’ll also see if anything is frustrating me easily.

The good news is if Mayo says you’re good, not too many medical places argue too much with them. Like my flying scenario, arguing with a Mayo neurologist is ... unwise. Ha. That’s certainly a silver lining on things.

It would take quite a medical Luddite to argue a Mayo written statement of status. Heh. In my opinion anyway.

Who you gonna get a second opinion from? In my case it is John’s Hopkins or the Cleveland Clinic. Those three are the end of the road for experts in this condition, worldwide.

Like the pulmonary doc said last March at Mayo when I remarked this is a rare condition, he said without even thinking about it... “Not here...”

And I came to peace long ago (as in the title of the thread) with permanent grounding. So there’s that. The light at the end of the tunnel is still visible right now.

How do you eat an elephant...
 
@denverpilot

Back when I was getting my PPL, there was an old coger that hung around the airport. He lost his medical due to heart issues, but was always willing to be a "safety pilot" to help people practice. I do not know the rules well enough to know if such a solution is still allowed currently (the safety pilots I use are all current with medical). Such a solution may allow you to get your "teaching fix" in.

Tim
 
denverpilot said:
[snip]
Surprise! She has an ascending aortic aneurysm. Spiffy.

[snip]

Of course now I can start the jokes...

“Now, now, dear... don’t get all riled up, you know raising your blood pressure isn’t good for you!”
[snip]
Click to expand...

Scary stuff! I'll add this to my prayer list.

If my wife is any guide, that joke will NOT lower her blood pressure! :)
 
denverpilot said:
@bbchien has given wise counsel.

Hoop number one in ANY neuro issue with FAA is, “documented stable symptoms for at least one year”.

There’s a list after that for third class. Or the option is still there for BasicMed.

The hard part during Covid is that darn documentation. A video call notes ain’t gonna cut it.

But just working on flaming hoop number one for now. If the flames get too silly, BasicMed is the Cirrus ‘chute. LOL.

Technically I’m still legal to instruct as long as it’s someone else who can be PIC. Whether that’s wise from a business standpoint (insurance, etc...) is a whole different thing. So I don’t. I’m not big on losing Karen’s house to even a frivolous lawsuit.

Also having not finished the CFI-I, that’s the most likely student base I would have as an independent with the non-PIC limitation. Not a lot of folks wanting Commercial ratings in their own aircraft.

Last year I had a couple of folks ask me about Flight Reviews also and almost did them, was just a touch leery about it and opted out considering a lot of symptom changes were happening rapidly.

I also officially closed down the LLC last year. Seemed silly to do quarterly taxes and such (well, all $0 anyway) until we truly knew a path forward is available. Making a new one later is easy.

Once we get to that “stable symptoms” plateau I’ll feel a lot more confident about what I need to do to adapt in a cockpit. I know pilots with worse physical issues who are fully capable and legal to fly, so I’m not incredibly concerned about the physical stuff.

If I’m walking with mildly numb feet (relearn rudder pressures and such, I’ve been fine driving but did have to be cautious at first) and the right hand is mildly goofed (instructors sometimes — er, inevitably — need to hide that they’re guarding controls but be able to act quickly), it’s certainly possible to fly an airplane or even teach with those limitations.

Personal flying is well within the bounds of reality also, I feel.

That said, tackling primary students as a first step back would just be, unwise. Ha. (Hell, teaching primary students in general, is a touch unwise! Ha.)

I’ll formulate a specific plan for cockpit return when true symptom stability hits. And start deciding whether the fire hoops are worth it. My plan will be written and have my own personal hoops to jump thru. Current AND competent. Have CFI friends who can monitor me from either seat and beat away any bad habits that want to return after an extended hiatus. They’ll also see if anything is frustrating me easily.

The good news is if Mayo says you’re good, not too many medical places argue too much with them. Like my flying scenario, arguing with a Mayo neurologist is ... unwise. Ha. That’s certainly a silver lining on things.

It would take quite a medical Luddite to argue a Mayo written statement of status. Heh. In my opinion anyway.

Who you gonna get a second opinion from? In my case it is John’s Hopkins or the Cleveland Clinic. Those three are the end of the road for experts in this condition, worldwide.

Like the pulmonary doc said last March at Mayo when I remarked this is a rare condition, he said without even thinking about it... “Not here...”

And I came to peace long ago (as in the title of the thread) with permanent grounding. So there’s that. The light at the end of the tunnel is still visible right now.

How do you eat an elephant...
Click to expand...


Nate, what flying do you want to do that you couldn’t do under Basic Med?
 
So it's good news-bad news.

Nate, hoping for good progress with you and hoping that they are able to fix up your wife without too many problems or insurance hassles.
 
Nate, I'm glad to hear that your recovery is continuing to progress well overall. From where you were when all of this started to now is incredible.

Half Fast said:
Nate, what flying do you want to do that you couldn’t do under Basic Med?
Click to expand...

I'd consider this, Nate. I'd also consider looking at flight you could do without a medical. Maybe that doesn't meet your wants, but I would suggest that having a medical is going to add a lot of work and stress for you every year, not to mention cost.

You're not flying 135, you're not flying for hire at all other than perhaps CFI. Why mess with a medical at all? I essentially have it as a requirement that I don't want to deal with a medical, and I'm healthy without any issues that would complicate it (fortunately).
 
I would avoid getting the FAA medical folks involved in this if at all possible.

It would take quite a medical Luddite to argue a Mayo written statement of status.
Click to expand...


I believe the FAA has a pretty good supply of those. “Mayo, schmayo - we’re the FAA!” And their response will be to ground you if they’re not knowledgeable about your ailment.
 
Half Fast said:
Nate, what flying do you want to do that you couldn’t do under Basic Med?
Click to expand...

Want to do? Well hell if you have a spare C-130 I could borrow... haha.

Maybe international stuff, you know the typical North American continent type jaunts would be the only thing I can think of that would be impossible without another pilot who qualified to cross the borders... that’s probably the only thing I’ve considered over the years that wouldn’t work.

Not really a big thing. If the Canadians think I’ll fall out of the sky and squish a precious caribou with my airplane, I’ll just wander elsewhere. Ha.
 
wsuffa said:
So it's good news-bad news.

Nate, hoping for good progress with you and hoping that they are able to fix up your wife without too many problems or insurance hassles.
Click to expand...

She just got her cardiology appointment the week I’m at Mayo so the household joke today in text messages is, “Cool we get to race and see who gets pre-approvals first! Go!” LOL. LOL
 
Half Fast said:
I would avoid getting the FAA medical folks involved in this if at all possible.




I believe the FAA has a pretty good supply of those. “Mayo, schmayo - we’re the FAA!” And their response will be to ground you if they’re not knowledgeable about your ailment.
Click to expand...

Trust me, I’m not going anywhere near that third rail unless someone with a whole lot more experience in these things says the process is nearly guaranteed. :)

If the radar says that OKC is the equivalent of pointing the nose at a thunderstorm and hoping for the best, I ain’t turning that direction. I’ll go around. Haha.
 
denverpilot said:


Also having not finished the CFI-I, that’s the most likely student base I would have as an independent with the non-PIC limitation. Not a lot of folks wanting Commercial ratings in their own aircraft.

Last year I had a couple of folks ask me about Flight Reviews also and almost did them, was just a touch leery about it and opted out considering a lot of symptom changes were happening rapidly.
Click to expand...

Not to add rain on anything, but even as a instrument flight instructor you would still need to hold a medical certificate or meet the requirements for BasicMed (and act as PIC) because a CFII also has to act as the safety pilot. And the safety pilot has to meet medical eligibility requirements. So unless you're providing instrument flight instruction to someone who is already instrument rated and legal to act as PIC under IFR in actual IMC*, you wouldn't be able to do much without BasicMed or a 3rd class medical.

Nevertheless, I hope things stabilize and you can get to the point where you can fly again. Here's another POAer pulling for you!


*invariably someone is going to challenge me that Nate could act as an instrument flight instructor for someone on a dark non-moonlit light over the pacific, a desert, or the Rockies, or whatever and log actual instrument time without requiring a view limiting device (and a safety pilot). Umm, okay, but still not practical.
 
Brad Z said:

Not to add rain on anything, but even as a instrument flight instructor you would still need to hold a medical certificate or meet the requirements for BasicMed (and act as PIC) because a CFII also has to act as the safety pilot. And the safety pilot has to meet medical eligibility requirements. So unless you're providing instrument flight instruction to someone who is already instrument rated and legal to act as PIC under IFR in actual IMC*, you wouldn't be able to do much without BasicMed or a 3rd class medical.

Nevertheless, I hope things stabilize and you can get to the point where you can fly again. Here's another POAer pulling for you!


*invariably someone is going to challenge me that Nate could act as an instrument flight instructor for someone on a dark non-moonlit light over the pacific, a desert, or the Rockies, or whatever and log actual instrument time without requiring a view limiting device (and a safety pilot). Umm, okay, but still not practical.
Click to expand...

And I'll add, since it was part of my study for my IR practical last week, Basic Med doesn't qualify for a safety pilot unless the safety pilot is also PIC. It's a loop hole/oversight in the Basic Med regulations. AC-68-1 FAA BasicMed FAQ. (Or at least asserted in the ASA Instrument Pilot Oral Exam Guide question 9 under preflight.)
 
TCABM said:
They got some free advertising in the South Park Vaccine episode. Worth a watch as they did a really great job capturing social absurdity around the topic.
Click to expand...

Ooh I missed that. I love South Park. I just realized I’m way behind on episodes.

Probably a good thing to download for the hotel room in MN. LOL.
 
Half Fast said:
I would avoid getting the FAA medical folks involved in this if at all possible.




I believe the FAA has a pretty good supply of those. “Mayo, schmayo - we’re the FAA!” And their response will be to ground you if they’re not knowledgeable about your ailment.
Click to expand...
FAA wouldn't care much about Mayo. They have their own experts that have signed on to the regulatory process.

Remember that they're from the government and they're here to help you.
 
murphey said:
On the website

Casa Bonita is re-opening soon!
Check back here for more information as it becomes available
Click to expand...
Keep me in loop... be a damn good reason to do a long XC and a visit. Especially since the annual salvage yard pilgrimage isn’t ever going to happen again
 
denverpilot said:
Technically I’m still legal to instruct as long as it’s someone else who can be PIC.
Click to expand...

I knew a CFI that didn't have a medical but would do commercial training since the other pilot was the PIC. Obviously you couldn't do primary because you'd have to be the PIC. I assume CFII would work too if you had that.
 
Brad Z said:

Not to add rain on anything, but even as a instrument flight instructor you would still need to hold a medical certificate or meet the requirements for BasicMed (and act as PIC) because a CFII also has to act as the safety pilot. And the safety pilot has to meet medical eligibility requirements. So unless you're providing instrument flight instruction to someone who is already instrument rated and legal to act as PIC under IFR in actual IMC*, you wouldn't be able to do much without BasicMed or a 3rd class medical.

Nevertheless, I hope things stabilize and you can get to the point where you can fly again. Here's another POAer pulling for you!


*invariably someone is going to challenge me that Nate could act as an instrument flight instructor for someone on a dark non-moonlit light over the pacific, a desert, or the Rockies, or whatever and log actual instrument time without requiring a view limiting device (and a safety pilot). Umm, okay, but still not practical.
Click to expand...

Appreciate the regulatory sanity check on that one. No worries.

My first CFI did used to joke that the airplane wasn’t afraid of the dark. LOL
 
Off to Mayo for part of next week. Eight different appointments already in the app. Looks like it’ll be the usual whirlwind. Ha.

Karen sees the cardiologist soon about the aneurism too. She’s started joking around the house when I ask her to hand me something or carry some small item that maybe she shouldn’t exert herself that much. LOL.

Still waiting to see if some organization will give me a punch card for buy ten get one free MRI rides! Ha.

As noted in the other thread, the new tractor is fun. Hosing the cab off after mowing really shows how much dust I used to suck down. Sheesh.

Hooray for AC and a cab filter. That stuff is no bueno for me, medically. That’s fo’ sho’.

Updates whenever time allows. I’ll be doing some actual work stuff from the excitement of the hotel room desk so... don’t wanna leave friends here hangin’ but...
 
denverpilot said:
Still waiting to see if some organization will give me a punch card for buy ten get one free MRI rides! Ha.
Click to expand...
Make one of your own with one last punch to be done and ask the tech for the punch before you leave his/her domain. You’ll likely make their day and be the talk of the imaging crew for a few days.
 
denverpilot said:
Hosing the cab off after mowing really shows how much dust I used to suck down. Sheesh.

Hooray for AC and a cab filter. That stuff is no bueno for me, medically. That’s fo’ sho’.
Click to expand...
When I lived out there and mowed my place with a lawn tractor I wore a mask, before masks were a thing. Otherwise I would be awake sneezing the next night.
 
AggieMike88 said:
Make one of your own with one last punch to be done and ask the tech for the punch before you leave his/her domain. You’ll likely make their day and be the talk of the imaging crew for a few days.
Click to expand...

I really liked this idea but I couldn’t get it done yesterday with family Easter dinner and stuff. Haha. I really will make one for the home/local imagery place now that you pointed out it would be (more) fun than just joking with them about it!
 
denverpilot said:
I really liked this idea but I couldn’t get it done yesterday with family Easter dinner and stuff. Haha. I really will make one for the home/local imagery place now that you pointed out it would be (more) fun than just joking with them about it!
Click to expand...
If the places weren’t staffed with such young folk, I would suggest making your version of one of these...

upload_2021-4-5_21-57-57.jpeg
 
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