Maybe it’s permanent. Grounding that is.

I'm old and I've never seen one BUT I bet you know the phrase "E-Ticket ride" if that's a hint. :D

I do! I guess there was a time where you paid by the ride instead of simply once at entry for everything. Crazy! :p
 
If the places weren’t staffed with such young folk, I would suggest making your version of one of these...

View attachment 95373

Wow it's been a loooong time since I saw one of those. I worked at Walt Disney World the summer between high school and college taking tickets at the front gate of the Magic Kingdom and the Ticket and Transportation Center. That was mumbledy-mumble years ago (translates to circa 1977) before EPCOT, Animal Kingdom, etc. We had two 4'x8' sheets of plywood in the office, covered with different ticket types, to show us all the valid entry tickets. Tickets at the Disney parks never expired in those days. It was an interesting experience.
 
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.
I wonder if that's related to the Turners in any way. Do keep an eye on it, aneurisms are a good thing to die from.

By the way, probably the smartest undergraduate I ever had in the lab wound up at the Mayo. If they're all like Andy you are in really good hands. Good luck.
 
Disney world, maximum cash extraction experts.

And their customer service is simply beyond compare. We got to go as kids back when our grandparents got Florida resident tickets good for the year for pretty darn cheap (I want to say like $25 for the year). My wife (who had never been there) and I went back about 15 years ago and stayed on the property for a short visit. It was October and very empty and it was mind boggling how well we were treated, (something my 10 year old didn't grasp in 1970 something). No real desire to go back but worth is at a low traffic time.
 
I wonder if that's related to the Turners in any way. Do keep an eye on it, aneurisms are a good thing to die from.

She has a malformed valve from the Turners. She saw all these younger Turners folks doing regular cardiac checkups (they learned over the years) but her Doc wasn’t doing them so she asked for a stress echo, and voila... hey there’s a big ass aneurism in your aorta.

She had a few words for her GP to see if there’s other modern clinical standard procedures for Turners girls. She wasn’t super happy figuring out that protocol changed on her own. :)
 
Well there’s my Mayo surprise! LOL.

I’ve been walking around with a compression fracture of T11.

Explains why I needed a bit of ibuprofen recently. Ha.

Steroids (well we knew this already) are no bueno for me. Too many side effects to continue them even before the compression fracture. Safety protocol time. He wouldn’t have put me back on prednisone even without spotting the fracture.

Minor progression of the sarcoid in lungs (nearly identical to last year but slightly worse) indicates I’m in the 40% who don’t respond to the steroids and need to go on an immune suppressant / steroid sparing drug like methotrexate — which I also already suspected. PFT was identical to last time. Minor small airway issues borderline normal.

So Doc joked (very seriously)... “How long has your back been hurting?”

Nice to meet the new doc. We’ll definitely get along. He’s also consulting with Mayo’s sarcoid specialist who’s name I recognized from a bunch of papers.

Apparently if it didn’t land me in the ER what he would have ordered was a Neuro consult and MRI — and guess what is already scheduled here this week anyway? Haha.

Explains why it was so uncomfortable to sit up straight for months... haha. Sheesh.

Probably also a good thing the tractor has an air ride seat but I’m probably banned from bouncy tractor for a little while. Haha.

Doc said a chest CT isn’t really the usual way to spot a broken back. Haha. Yeah...
 
Jeez Nate, don't be breaking those bones, you have enough to deal with!!!

LOL, right?! Ha.

Was probably the last thing I thought I’d get news of out here this week! Haha.

Anywhoo... having some dinner and then passing out in the hotel.

I guess I can’t be too hard on myself for “giving in” and taking some ibuprofen recently. Hahaha. Man I was annoyed the pain levels were “rising”.

Ha. No dummy, you broke your back somewhere...

Stubborn Germans.

I think I’ll take an ibuprofen before bed. Hahaha.
 
but I’m probably banned from bouncy tractor for a little while. Haha
Gotta nickel or dime?

DFBB675F-1D4C-4153-A15C-16FD179F0E14.jpeg
 
It’s funny. Now all evening I keep thinking of things that hurt that I was doing and now I know why!

Doctor it hurts when I do X.

Don’t do that.

LOL. Crazy.
 
Hang in there! Still praying.

Appreciate it. Add one that the chocolate cake I had with dinner doesn’t kill me before morning! Ha.

Not going to make it a habit and happy I’ve lost lots of pounds but a friend said I had to try Chester’s chocolate cake.

It’s the founders grandma’s recipe. Grandma was apparently a brilliant woman. Ha. Holy cow. Good.

Sweets like that are much better when you hunt down truly amazing ones for a rare occasional treat. Oh my goodness. Delicious.

And the blood sugar being well under control these days — well it was time to abuse the pancreas just a little. Ha.

Sleepy time. G’night all.
 
I resemble the stubborn remark. Irish, Polish, Russian and German :)
Not sure which one to blame for it.

Tim
 
Wifey had good news from the cardiologist today. He said he now has three Turner’s patients and they all have the same thing.

We thought @steingar would smile at that. Mutants!

The good news is the valve isn’t leaking yet, and barring anything bad seen on MRI coming up, he says, “We’ll go in and fix both when they get worse sometime in the next 20 years. Two for one, we do them at the same time. No heavy lifting and control the BP religiously.”
 
Wifey had good news from the cardiologist today. He said he now has three Turner’s patients and they all have the same thing.

We thought @steingar would smile at that. Mutants!

The good news is the valve isn’t leaking yet, and barring anything bad seen on MRI coming up, he says, “We’ll go in and fix both when they get worse sometime in the next 20 years. Two for one, we do them at the same time. No heavy lifting and control the BP religiously.”
Good to hear she's in good shape. I'd never seen that as a Turner's pathology, but unsurprised that it is.
 
Wifey had good news from the cardiologist today. He said he now has three Turner’s patients and they all have the same thing.

We thought @steingar would smile at that. Mutants!

The good news is the valve isn’t leaking yet, and barring anything bad seen on MRI coming up, he says, “We’ll go in and fix both when they get worse sometime in the next 20 years. Two for one, we do them at the same time. No heavy lifting and control the BP religiously.”
Better get your problem resolved - you'll be doing the housework....
 
Oh man that was funny.

Obviously I’ve been working with Doc @bbchien throughout this thing but we had a conversation long ago — and folks here of course too — about long term going BasicMed.

Waaaaaay back when I started booking my week of Medical Disney “fun” I talked to Mayo about their Aeromed dept and learned they do BasicMed.

It’s actually an interesting setup. The AMEs don’t touch BasicMed with a ten foot pole for essentially “conflict of interest” reasons. But the Aeromed dept employs Occupational medicine Docs who do it, and of course also can consult with AMEs and colleagues if they see anything they don’t like.

So anyway. I called and messaged a while back saying I wanted a consult ONLY with the BasicMed side, not bringing a form, just a chat with their Doc about FUTURE options. And of course, guess what note got lost before the appointment today? Haha.

I go in and two nurses are looking at me funny and I see there’s an eye tester and all the usual implements of pilot torture and realize... they think I’m here applying for BasicMed! LOL.

I quickly mention I’m just looking for a consult and these two ultra polite Mayo nurses immediately and visibly relax and start laughing. We joke about the crazy guy who is sitting here with a broken back going, “Hey can you sign me off to go fly airplanes???” ROFLMAO.

Anyway quick meeting with the occupational doc who also was instantly relieved. She had consulted with an AME and was like, you gotta be kidding me. Haha. Especially after this week’s fun! Ha.

Anyway. Lovely lady. She said their advice is identical to Bruce’s (and every sane Doc on the planet for that matter), happy to work with me after symptoms are stable!

As an aside she said it’s fairly common to work with a real AME who doesn’t want to put someone thru special issuance but who can answer any specific questions the occupational doc has in mind to their satisfaction. An interesting model.

So there’s today’s funny. Three poor occupational medicine people thought some crazy ass pilot wanted to go flying with a broken back. Hahaha. They were sooooo nervous at first! Haha.

In other news the Neuro likes what she saw on the mri. Current working theory is sarcoid is out of the spinal cord. Some damage and scar tissue but looks clear. 6 more months will tell for sure.

Neuro was grumpy at the prednisone taper. She said that actually was not the correct protocol for Neuro but we both suspect the doctor change, Covid, and the massive side effects led to an early taper. However... the early taper actually worked out. Sarc is gone from spine and we got steroids stopped before I really started cracking bones.

She added an endocrinologist appt and bone density test because of the cracked vertebrae and no treatment needed for it, just let it heal up.

Out of all the Mayo Docs I’ve met she’s the pit bull. “Why isn’t this already ordered, I’m ordering this right now... I’m sending a note about that steroid taper...” etc. She’s aggressively after it.

She says numbers are still good because I’m a Neurosarcoidosis patient that hitting it hard with methotrexate can finish completely slapping it into submission. The pulmonary Docs think in terms of it being lifelong but for some reason patients who present in neurology respond better to treatment. So get after it. She’s grumpy about the three month pause from end of prednisone to now also.

The one question that gave her pause and she said pulmonary may not even have a good answer and even an infectious disease consult might not have a good answer for...

Delay methotrexate to beginning of May because I have a second Covid vaccine shot scheduled Apr 22? Let the immune system react or suppress it for the sarcoidosis?

Might be a coin flip on that one.

She definitely saw why I thought the pain symptoms were sarcoid returning instead of cracking a vertebrae. She shook her head and said we were lucky to be doing imagery this week or we’d never have known.

Some of the timing of this stuff even without “wrong protocol” sure seems to have worked out well, considering Covid and world inanity. Ha.

That’s all for now. More tests tomorrow and maybe endocrine or that might have to be on Monday. I was prepared to change travel plans like always. Ha. At this point she just wants to make sure my bones don’t get any more brittle! I like that plan.

Oh yeah. Knew this already but she emphasized now that Covid world craziness is slowing to start getting referrals and a local Doc team going at home. Mayo is happy to manage from afar but she said we’re into the heavy monitoring stage and quarterly would be great. Get the scheduling beast rolling to see all three specialties locally and tell them they can contact the Mayo team with any questions at any time.

That’s the news today... more fun tomorrow. Ha. But the best was scaring the poor occupational folks! Haha. I tried not to I swear.

Buddy of mine already wise cracked that I should have loudly said, “BadicMed?! Hell no, I’m here for a 1st Class! There must be some mixup!” LOL LOL LOL
 
Oh man that was funny.

Obviously I’ve been working with Doc @bbchien throughout this thing but we had a conversation long ago — and folks here of course too — about long term going BasicMed.

Waaaaaay back when I started booking my week of Medical Disney “fun” I talked to Mayo about their Aeromed dept and learned they do BasicMed.

It’s actually an interesting setup. The AMEs don’t touch BasicMed with a ten foot pole for essentially “conflict of interest” reasons. But the Aeromed dept employs Occupational medicine Docs who do it, and of course also can consult with AMEs and colleagues if they see anything they don’t like.

So anyway. I called and messaged a while back saying I wanted a consult ONLY with the BasicMed side, not bringing a form, just a chat with their Doc about FUTURE options. And of course, guess what note got lost before the appointment today? Haha.

I go in and two nurses are looking at me funny and I see there’s an eye tester and all the usual implements of pilot torture and realize... they think I’m here applying for BasicMed! LOL.

I quickly mention I’m just looking for a consult and these two ultra polite Mayo nurses immediately and visibly relax and start laughing. We joke about the crazy guy who is sitting here with a broken back going, “Hey can you sign me off to go fly airplanes???” ROFLMAO.

Anyway quick meeting with the occupational doc who also was instantly relieved. She had consulted with an AME and was like, you gotta be kidding me. Haha. Especially after this week’s fun! Ha.

Anyway. Lovely lady. She said their advice is identical to Bruce’s (and every sane Doc on the planet for that matter), happy to work with me after symptoms are stable!

As an aside she said it’s fairly common to work with a real AME who doesn’t want to put someone thru special issuance but who can answer any specific questions the occupational doc has in mind to their satisfaction. An interesting model.

So there’s today’s funny. Three poor occupational medicine people thought some crazy ass pilot wanted to go flying with a broken back. Hahaha. They were sooooo nervous at first! Haha.

In other news the Neuro likes what she saw on the mri. Current working theory is sarcoid is out of the spinal cord. Some damage and scar tissue but looks clear. 6 more months will tell for sure.

Neuro was grumpy at the prednisone taper. She said that actually was not the correct protocol for Neuro but we both suspect the doctor change, Covid, and the massive side effects led to an early taper. However... the early taper actually worked out. Sarc is gone from spine and we got steroids stopped before I really started cracking bones.

She added an endocrinologist appt and bone density test because of the cracked vertebrae and no treatment needed for it, just let it heal up.

Out of all the Mayo Docs I’ve met she’s the pit bull. “Why isn’t this already ordered, I’m ordering this right now... I’m sending a note about that steroid taper...” etc. She’s aggressively after it.

She says numbers are still good because I’m a Neurosarcoidosis patient that hitting it hard with methotrexate can finish completely slapping it into submission. The pulmonary Docs think in terms of it being lifelong but for some reason patients who present in neurology respond better to treatment. So get after it. She’s grumpy about the three month pause from end of prednisone to now also.

The one question that gave her pause and she said pulmonary may not even have a good answer and even an infectious disease consult might not have a good answer for...

Delay methotrexate to beginning of May because I have a second Covid vaccine shot scheduled Apr 22? Let the immune system react or suppress it for the sarcoidosis?

Might be a coin flip on that one.

She definitely saw why I thought the pain symptoms were sarcoid returning instead of cracking a vertebrae. She shook her head and said we were lucky to be doing imagery this week or we’d never have known.

Some of the timing of this stuff even without “wrong protocol” sure seems to have worked out well, considering Covid and world inanity. Ha.

That’s all for now. More tests tomorrow and maybe endocrine or that might have to be on Monday. I was prepared to change travel plans like always. Ha. At this point she just wants to make sure my bones don’t get any more brittle! I like that plan.

Oh yeah. Knew this already but she emphasized now that Covid world craziness is slowing to start getting referrals and a local Doc team going at home. Mayo is happy to manage from afar but she said we’re into the heavy monitoring stage and quarterly would be great. Get the scheduling beast rolling to see all three specialties locally and tell them they can contact the Mayo team with any questions at any time.

That’s the news today... more fun tomorrow. Ha. But the best was scaring the poor occupational folks! Haha. I tried not to I swear.

Buddy of mine already wise cracked that I should have loudly said, “BadicMed?! Hell no, I’m here for a 1st Class! There must be some mixup!” LOL LOL LOL

You should have said, "What's the issue? I flew here, does this mean I can't fly home?" Lol, sounds like good news and typical medical misfires.
 
You should have said, "What's the issue? I flew here, does this mean I can't fly home?" Lol, sounds like good news and typical medical misfires.

Or, "No, of course I don't want to fly! This is for my skydiving certification!"

ROFL!

(Well not really. If I roll on the floor I might not get up. Hahaha.)
 
WN 3226 to DEN. Capt just said his FO is “Roger Murdock”.
I would have laughed out loud too!

So, I just had to look! There are two pilots named Roger Murdock in the FAA Pilot Database. Neither got past being a student pilot. That said, perhaps one was a passenger on your flight...and he didn't have the fish. :rolleyes:
 
So the end result...

Off prednisone probably forever.

Neuro says sarc is either fully eradicated from spinal cord and I have some scar tissue in the cord or it’s barely still there. She released me as a Neuro patient essentially with the caveat that pulmonary and endocrine can’t take me off the drugs without a final full brain to butt MRI of the spine for one last look.

Pulmonary found tiny signs of still active sarc in lungs and is flippping me to methotrexate to attempt to get rid of it.

Endocrine had no concerns about anything other than bone density and said osteopenia from steroids — including the steroid IVs when I was misdiagnosed — is the most likely cause of the cracked vertebrae and I should rebuild bone on my own off steroids but it was a toss up whether to add an osteoporosis drug to help that along. They said the main reason to do it is they’d feel bad if it wasn’t on board and I crack another bone. So we added it and will follow up with a new bone density scan in 6 mo to a year.

So now we monitor for the rare but really really bad side effects from methotrexate and I recover from a broken back with zero pain meds because they’re incompatible with methotrexate unless you want to kill your liver or give yourself lymphoma. Ha. NSAIDs plus methotrexate == very bad things.

Mayo also confirmed no great numbers yet on effectiveness of the Covid shots while on methotrexate but I won’t be at full dose by shot number two and there’s zero indication it’s harmful so just press on with that. Maybe lower the effectiveness of the second dose, maybe not, but not going to try to time it and hold off on either one.

Not with having a gap between end of prednisone and beginning of methotrexate of three months caused by both good looking imagery and scheduling problems. Just plow forward with both.

PT/OT recommended for the lingering Neuro issues now in the hand and right hip flexor. Atrophy. Get after it and build some muscle back now.

And an admonition to absolutely not fall down for a while. I’d probably crack another bone with a hard fall.

Get back to exercising, avoid twisting and bending while the back heals, and put up with it hurting — couple of months more of that.

They saw where I put up with the initial Neuro pain to the point where cracking a vertebrae I thought was just a new Neuro symptom. Which made me not bother saying anything more than “I think this new pain is mechanical somehow” a couple months ago in a message to the Neuro.

Yeah. It was. Hahaha. Sheesh.

I guess they figure my stubborn ass can handle a backache for a bit.

Steroids did their job. Maybe a bit too well.

Oh yeah other stuff. Diabetic reaction seems to have stopped. I ate a couple incredibly bad things and saw normal glucose spikes to reasonable levels anyone would have and good recovery. Still no drugs for that for a long time now.

Bowel stuff lingering on and off is from a year of antibiotics. Eat your yogurt and add some probiotics and that’ll straighten out fine.

Everybody is happy about the diet changes and weight loss. Official Mayo visit to Mayo visit was 30 lbs, had lost roughly 20 before the first Mayo visit. Got to take a photo with me and a high school friend one night in Minneapolis and I look like a white haired twig next to him. He’s a rheumatoid arthritis patient and needs to move more and do the diet changes before his weight kills him, but it’s an amazing contrast in the photo.

In all good news. Probably another year of dealing with the prednisone side effects and seeing if I’m on the path to full remission or one of the 40% that need a maintenance drug to keep the immune system chilled out.

It’s still fun to watch Mayo Docs formally argue about you. Ha.

“You guys didn’t follow protocol and took him off steroids too soon, but since the spine is clear and we started cracking bones, that worked out...”

“Yeah we had the entire department look at his case in January and decided it was the right call until the bone cracking...”

In all really decent news. I just never get to do anything the easy way. Ha. Story of my life. If there’s a side effect or a timing issue that will jump in front of the freight train, it’ll happen to me. Ha. Y’all have seen my weather magnet posts and the inane avionics crap that plagued my multi training. Ha.

If there’s a harder way to get to any goal it’ll be tossed in my path. Ha. Head down and carry on.

Even blood draws are a pain in the butt.

“I told you that vein is deep.” LOL.

One phlebotomist tech even said “Oh I see where the IV nurse missed. It rolled to the right. I can get that one but I’m not really supposed to get too close to that.”

I told her go for it. I knew she’d get it. She kinda looked around to see if anybody heard and got it instantly. Ha. When you see someone that focused and confident — let her do it!

Got a mountain of work stuff to catch up on now after my extended visit to Medical Disney.

Half of that will probably de-rail completely here shortly. Haha. Going to try to catch up and get ahead of it.

More news — barring any more side effect insanity — in three to six months!

So there’s the current SItRep. Chances are still a coin toss on complete remission or long term immune suppression but either way it’s out of the spinal cord or very close now.

Still credit @bbchien with his advice to get a Doc that knew what they were doing when it was being misdiagnosed. I still owe you a (healthy!?) dinner of your choosing someday, somewhere and a toast of thanks. I can’t join in on the toast on this drug though! Haha. Alcohol no es bueno as you know! Ha.

Wanna meet up and be a couple old guys eating a lovely dinner salad sometime? Hahaha.

Off to go find “the right” pillow for my desk chair... oof.
 
Man, this has been a "long and winding road." I'm so glad that it looks like it's coming to a good ending...

See, prayer works, oh and good doctors, and savvy patients, and nurses, and pharma... And...
 
Nate - thanks for the update and so glad for you to hear that things are all lining up in a generally positive direction!
 
Comedy of errors getting the blood draw orders from Mayo to the local lab but managed to get them all to leverage that amazing piece of tech, a fax machine, and got er did. Mayo mailed them USPS over a week ago. They didn’t make it.

Funniest part was my wife’s company opened a new hospital closer to our home recently and it’s not completely up and running like a well oiled machine yet. Since Ye Olde Insurance says to go to company facilities whenever possible for best out of pocket rates — I went there.

Apparently they haven’t had too many walk ins for lab work yet. They pointed me to the lab’s break room. “They haven’t figured out where we do this yet, but this is a nice comfortable space.” LOL. Most blood draws there are likely in the ER or a specific Doc’s office.

Anyway. Methotrexate is definitely a heavy hitter. I feel weird for an hour after taking it and I’m only at half dose. Next Friday at full dose I better make sure I have no plans afterward. Sheesh. They say you get used to it. Luckily no signs of any bad side effects and such. I had five minutes of shivering the other night when I was outside working and actually got cold and then the nurse and I agonized over whether or not to report it. The list of things to report is pretty much every possible symptom anyone could ever have. Ha. We decided they’re watching for infection and after a few minutes under a blanket I was warm and that was that.

It’s the season where no matter what jacket you grab, it’s the wrong one. Ha.

Anyway methotrexate reaction — not even sure how to describe it but your body definitely has a “WTF was that?” reaction for a very short while. Ha.

Supposedly it makes many nauseous but haven’t really seen that for me. Tummy feels “off” for an hour but no particular desire to hurl. That’s nice.

Stay off drugs if you can, kids! Ha.

Oh. The busted back is much happier after a week of NOT twisting and bending wrong and doing stupid crap now that I knew it was busted. Last night that area popped a bit when I laid down flat to go to bed. Toink! I have no idea if that’s good or bad. Haha. Felt good though. Ha. Flat is good. I like flat. Ha. Has really only been painful to a distraction point one day this week so I’ll take that too, considering pain meds are a big no-no.

And... I’m guessing snow shoveling isn’t on the approved exercise list. I was super careful clearing the slushy crap off the deck so the doggies could go out. Ha. Just have to clear that spot so the deck swinging door can open for doggies to do their outdoor things.

I’m sure it would be funny watching some big guy like me do 1/3 of a small plastic shovel at a time, making sure he doesn’t lift much, or twist or slip and fall, or even slip and tweak something. Must have looked like someone eating the proverbial elephant with a teaspoon. Oh well. Slow and careful and steady wins the race.

The rest will all melt on its own shortly. Stupid snow.
 
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