Maybe it’s permanent. Grounding that is.
- Thread starter denverpilot
- Start date
...and everything else, too.
bnt83
Final Approach
FWIW, I had chronic low platelets for 20 years which steroids and splenectomy failed help much, the best chemo that worked was Rituximab and I only had two treatments over about three to four years I figured it was just a matter of time before I needed it again but then I almost died in 2009 from sepsis, its been 10 years and going strong with no platelet issues or treatment.
I can't wait till there is a near-death therapy study lol
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Nate's halfway to Kansas. (*grins & giggles*)
Ah....another one to add to the CO-POA list.
gkainz
Final Approach
Howdy, neighbor, and welcome to POA. Oh wait - you joined in April and just now getting around to saying "hi"? Hmmm, no, I guess it's me that has dawdled and dilly-dallied getting around to saying "Hi".
From one border towner (Golden/Arvada) to another - hey!
Yeah, and like Murphy noted, Nate's about halfway to Kansas ...
Howdy, neighbor, and welcome to POA. Oh wait - you joined in April and just now getting around to saying "hi"? Hmmm, no, I guess it's me that has dawdled and dilly-dallied getting around to saying "Hi".
From one border towner (Golden/Arvada) to another - hey!
Yeah, and like Murphy noted, Nate's about halfway to Kansas ...
I guess I assumed wrong with his display name being “Denver pilot” my bad
gkainz
Final Approach
Nah, we're just giving Nate a hard time ... he's not "that" far out of town ... unless you're trying to get there from out here in the foothills ... then he's a long LONG way east.
denverpilot
Tied Down
NW Elbert County.
ya I can agree, that’s about half way to Kansas
denverpilot
Tied Down
Rode the MRI tube today. Guess we will know if and what changed since May in 24/48 hours.
New machine at a new facility very close to home. Joked with the staff that they’ll probably see me again. Showed up in light long sleeve mock turtleneck and sweatpants. Had all metal stuffed in leather jacket pockets. Kinda have the routine down now. LOL.
Machine made interesting new noises. Also seems like whoever balanced it needs to come do a tweak. Thing bounced more than any I’ve been in at certain points in the brain scan. Can’t help image quality shaking like that. You could tell that was the part where it was cranked up to Spaceballs style Ludicrous Speed or Ludicrous Teslas or whatever. Ha.
Being a new facility without any old salts they got all hot and bothered that I’ve had a mild nausea reaction to MRI contrast more than once. Nurse pushed it in slowly and then wouldn’t shut up asking over and over if I was cool. LOL.
At the previous place the nurse just said he had a bucket / trash can handy and his finger on the human eject switch and just say go if it got too strong. Ha. Trash can will be to your left. Ha.
Anyway reaction was milder than ever but still there for about two minutes like always. I wanted to just yell out of the tube to tell her to shut up about it, it didn’t kill me the last time, it won’t kill me today. Hahaha.
Asking constantly and making me talk and think about it is like asking the drunk in your car how they’re feeling. You’re going to *cause* the problem. Ha.
Shut up and let me listen to the music and I’ll tell ya when I’m ready to stop my tiny squirming to swallow saliva in a minute for good imagery. Hahaha.
It was funny. Beforehand she went to go ask the MRI tech if he wanted me pre medicated for it. I assume Benadryl in case of something anaphylactic. He was like, no... if he’s had that many MRIs he knows his body better than you. Just ask him to stay in the lobby an extra ten minutes afterward since there’s an ER next door.
Soooo anyway. We wait. Inflammation gone? No change? New lesions? Who knows. I’ll know the results suck if the neuro office won’t tell me on the phone. That’s always the poker tell.
Which just means a long drive across town and walking their icy outdoor stairs. Yeah. The stair thing surprises me too. Ha. You’d think... neuro patients... they’d yell at their landlord to clean them better.
Just text it to me. It is whatever it is. IT engineers are used to 2AM texts that the SHTF. LOL.
Picked up the handicapped placards on Monday at DMV. Haven’t needed them yet but will for super long distances. 3 year renewal with doc note every 9 apparently. Only thing I’ve ever gotten for free at a DMV office.
Had some entertaining tremors yesterday. Think it was a combo of low blood sugar and tired. PT showed me her cool tricks to get those to stop. Only showed up when working muscles so she worked them harder and they quit. Was HILARIOUS on the balance board at first though.
Totally could easily keep my balance on it, but both legs decided to add their own version of a rock drummer playing 16th notes with both feet. I’m standing there balanced just fine, even easily, and the legs are vibrating. LOL. So freaking weird.
I joked with the PT that she’s told me to tap my feet fast in unison when seated — apparently it helps the brain figure out one foot is slow and to try harder to connect to it — and here they were doing it all on their own. Her response...
“When is that MRI?” Hahahaha. Yeah....
New machine at a new facility very close to home. Joked with the staff that they’ll probably see me again. Showed up in light long sleeve mock turtleneck and sweatpants. Had all metal stuffed in leather jacket pockets. Kinda have the routine down now. LOL.
Machine made interesting new noises. Also seems like whoever balanced it needs to come do a tweak. Thing bounced more than any I’ve been in at certain points in the brain scan. Can’t help image quality shaking like that. You could tell that was the part where it was cranked up to Spaceballs style Ludicrous Speed or Ludicrous Teslas or whatever. Ha.
Being a new facility without any old salts they got all hot and bothered that I’ve had a mild nausea reaction to MRI contrast more than once. Nurse pushed it in slowly and then wouldn’t shut up asking over and over if I was cool. LOL.
At the previous place the nurse just said he had a bucket / trash can handy and his finger on the human eject switch and just say go if it got too strong. Ha. Trash can will be to your left. Ha.
Anyway reaction was milder than ever but still there for about two minutes like always. I wanted to just yell out of the tube to tell her to shut up about it, it didn’t kill me the last time, it won’t kill me today. Hahaha.
Asking constantly and making me talk and think about it is like asking the drunk in your car how they’re feeling. You’re going to *cause* the problem. Ha.
Shut up and let me listen to the music and I’ll tell ya when I’m ready to stop my tiny squirming to swallow saliva in a minute for good imagery. Hahaha.
It was funny. Beforehand she went to go ask the MRI tech if he wanted me pre medicated for it. I assume Benadryl in case of something anaphylactic. He was like, no... if he’s had that many MRIs he knows his body better than you. Just ask him to stay in the lobby an extra ten minutes afterward since there’s an ER next door.
Soooo anyway. We wait. Inflammation gone? No change? New lesions? Who knows. I’ll know the results suck if the neuro office won’t tell me on the phone. That’s always the poker tell.
Which just means a long drive across town and walking their icy outdoor stairs. Yeah. The stair thing surprises me too. Ha. You’d think... neuro patients... they’d yell at their landlord to clean them better.
Just text it to me. It is whatever it is. IT engineers are used to 2AM texts that the SHTF. LOL.
Picked up the handicapped placards on Monday at DMV. Haven’t needed them yet but will for super long distances. 3 year renewal with doc note every 9 apparently. Only thing I’ve ever gotten for free at a DMV office.
Had some entertaining tremors yesterday. Think it was a combo of low blood sugar and tired. PT showed me her cool tricks to get those to stop. Only showed up when working muscles so she worked them harder and they quit. Was HILARIOUS on the balance board at first though.
Totally could easily keep my balance on it, but both legs decided to add their own version of a rock drummer playing 16th notes with both feet. I’m standing there balanced just fine, even easily, and the legs are vibrating. LOL. So freaking weird.
I joked with the PT that she’s told me to tap my feet fast in unison when seated — apparently it helps the brain figure out one foot is slow and to try harder to connect to it — and here they were doing it all on their own. Her response...
“When is that MRI?” Hahahaha. Yeah....
tspear
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Timothy
@denverpilot
A co-worker should the doc the kinds of crazy emergency texts/emails IT people can get. The doc gave in and stopped making him come in to get the results of his cancer screenings.
Tim
A co-worker should the doc the kinds of crazy emergency texts/emails IT people can get. The doc gave in and stopped making him come in to get the results of his cancer screenings.
Tim
denverpilot
Tied Down
LOL!
So you’re saying I should just show my neurologist my Slack history and she’ll stop worrying about telling me bad news over the phone?
My favorite was ...
“There was an explosion at the data center. Nobody hurt. Firefighters have evacuated the building. Can you go up there and see what the hell is going on? If they’ll let you, grab one of the OS mirror drives out of [specific Sun server], with those we can live with everything else going to data center number two. But I’ve been meaning to copy one of those and hadn’t done it yet so we are dead until we get one of them. Whole company is down. Just in case they won’t let you in, I’ll start trying to build a replacement for that box from scratch...”
Found out a manufacturing flaw in a bus bar the size of a truss caused it to explode killing entire data center. Shrapnel missed embedding itself in a good friend’s head by about ten minutes. He left work on time that Friday night or he’d have been seriously injured or dead. Copper was embedded deep into his desk.
denverpilot
Tied Down
Oh I forgot the other funny from today.
The front desk lady at the MRI place said she felt bad asking for such a large chunk of money at once due to the year change and need to hit the annual deductible again.
I laughed and said I doubt there will be a year where I don’t hit the annual max out of pocket every year besides the much smaller deductible.
Getting it out of the way early on a single bill is actually easier record keeping for me! Hahaha.
I don’t think this new MRI office has had the experience of having many “frequent flyers” with long term disorders yet. Ha.
She also told me about her wild brain surgery. Her brain didn’t fit in her skull. So they got rid of some skull.
It came up because she had a compilation that sent her to a wound care clinic. And that came up because my wife works for the same overarching healthcare company. At a wound care clinic.
Probably the same one the front desk girl went to.
After I left I went back in to use the restroom after thinking about it and she was sitting there with what looked like an extendible radio antenna. I had to look and saw no radio so I asked what it was.
Harbor Freight magnetic pick up thing for dropped nuts and bolts. They use it to see if anything is magnetic on someone or something before it goes into the MRI room. Hahahaha.
The front desk lady at the MRI place said she felt bad asking for such a large chunk of money at once due to the year change and need to hit the annual deductible again.
I laughed and said I doubt there will be a year where I don’t hit the annual max out of pocket every year besides the much smaller deductible.
Getting it out of the way early on a single bill is actually easier record keeping for me! Hahaha.
I don’t think this new MRI office has had the experience of having many “frequent flyers” with long term disorders yet. Ha.
She also told me about her wild brain surgery. Her brain didn’t fit in her skull. So they got rid of some skull.
It came up because she had a compilation that sent her to a wound care clinic. And that came up because my wife works for the same overarching healthcare company. At a wound care clinic.
Probably the same one the front desk girl went to.
After I left I went back in to use the restroom after thinking about it and she was sitting there with what looked like an extendible radio antenna. I had to look and saw no radio so I asked what it was.
Harbor Freight magnetic pick up thing for dropped nuts and bolts. They use it to see if anything is magnetic on someone or something before it goes into the MRI room. Hahahaha.
tspear
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Timothy
denverpilot
Tied Down
I get it. I also get if they want to bill the office visit.
If there was a way to tell them to wink wink bill the visit and tell me when i visited ... for the bad news... that’d be fine by me. LOL.
Why of *course* I drove over that day. It’s right here in my Google calendar.
denverpilot
Tied Down
Technically it may have been the GE version. She didn’t say HF. I just recognized it as the same one.
GE probably buys from the same factory in China and slaps their label on it. LOL.
denverpilot
Tied Down
Update and not great news. Also tagging @bbchien ...
MRI showed new active lesions. I didn’t get location (further into Thorasic or brand new in brain) because it was just a all from the assistant but I’m pretty sure she said spinal and not brain.
It was a quick call to let me know I’ll be headed for another ASAP high steroid 3 day infusion tomorrow to try to knock down the inflammation and stop the relapse. The standard response to an active new lesion.
Then I suppose the docs will continue to dig for a cause. I’ll probably see them early next week after the steroids.
The new lesions are the cause of the continued slow decline in leg function.
MRI showed new active lesions. I didn’t get location (further into Thorasic or brand new in brain) because it was just a all from the assistant but I’m pretty sure she said spinal and not brain.
It was a quick call to let me know I’ll be headed for another ASAP high steroid 3 day infusion tomorrow to try to knock down the inflammation and stop the relapse. The standard response to an active new lesion.
Then I suppose the docs will continue to dig for a cause. I’ll probably see them early next week after the steroids.
The new lesions are the cause of the continued slow decline in leg function.
denverpilot
Tied Down
Kinda.
My grandparents watched people suffer from Polio and my dad’s generation watched people suffer from highly treatable cancers... so my generation was pretty likely to watch people suffer from something else. Might as well be autoimmune disorders... everyone is used to cardiovascular in our chubby society! LOL.
No rose gardens promised or expected in my mostly broke farming family. Many have higher expectations of life and take harder falls when the roses don’t bloom!
And we had two more young children’s parents show up in my online support group this week. A weekly occurrence.
Those hit me harder than me. I saw a lot of people grow old and infirm knowing two great-grandparents, all of my grandparents, and of course, my parent’s generation. Even seen one aunt and one uncle die of medical conditions younger than I am now. We’ve also seen mental illness, suicide, and alcoholism. So... yeah... seen a lot.
But we didn’t have sick kids. Lots of families do, I know. But it’s not in my mental picture or vocabulary. I don’t know how parents and Docs do that.
My family background is summed up pretty well by a video clip someone sent me in my support group when I shared the second round of lesions had shown up... and more than half there have had that news...
From the Shawshank Redemption...
“Get busy living, or get busy dying.”
We tend toward the living camp. At least until it gets real obvious it’s over real soon.
Or the Monty Python scene... “I’m not dead yet! I don’t want to go on the cart!!” LOL!
Or the other guy who has had undiagnosed TM for 12 years who joked my new walking style was just a software enhancement to the operating system, that includes new swagger. Hahaha.
Have two other good friends who’ve gone from flight status to not in a few months and more who’ve made it back. In private conversation we all agree this getting older **** is for the birds. Ha. But we check on each other to make sure that fall Icarus took — has a couple friends acting as air bags at the bottom.
I appreciate all you air bags.
See. I was just setting up a joke.
But honestly I do mean it!
Fallsrider
Line Up and Wait
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Fallsrider
Hoping and praying things turn around for you.
denverpilot
Tied Down
Tell ya what. I’d settle for leveling off. One flight axis at a time!!!! LOL.
Stephen Poole
Pre-takeoff checklist
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Professor31
@denverpilot, I love your attitude. You're still in my prayers.
denverpilot
Tied Down
So third day of steroids done and hungry of course! So finding breakfast. LOL. Trying a new place. Saturday and packed so probably decent. Karen is out of town so I’ll grab this grub then maybe a car wash (can’t let the brand new wheels get tooooo dirty the first week!) and go chill with the pups. Maybe knock out some low physical activity to do list items.
Some sensory stuff came back-ish in legs and feet and some numb areas went down significantly, which is good, and pretty much every bit of neuro/inflammatory pain went away but that’s common for this so we see how it goes after the body isn’t in shock. Right hand tremor returned but it’s cold out and it does that.
Some of my newfound swagger went down. Right leg behaving a bit better. Right hand still stupid but it doesn’t hurt now.
Maybe we hit these new lesion(s) soon enough to make a difference.
Very curious to know where they are and what they look like. Not that I’m any spinal cord lesion whisperer... but I’ve looked at a lot of images and my original one doesn’t look like anything from Mayo or Hopkins... LOL.
Also curious what the neuros think of such a quick relapse. If anything at all.
Anyway off to go see these cuties...
Some sensory stuff came back-ish in legs and feet and some numb areas went down significantly, which is good, and pretty much every bit of neuro/inflammatory pain went away but that’s common for this so we see how it goes after the body isn’t in shock. Right hand tremor returned but it’s cold out and it does that.
Some of my newfound swagger went down. Right leg behaving a bit better. Right hand still stupid but it doesn’t hurt now.
Maybe we hit these new lesion(s) soon enough to make a difference.
Very curious to know where they are and what they look like. Not that I’m any spinal cord lesion whisperer... but I’ve looked at a lot of images and my original one doesn’t look like anything from Mayo or Hopkins... LOL.
Also curious what the neuros think of such a quick relapse. If anything at all.
Anyway off to go see these cuties...
denverpilot
Tied Down
By the way. Breakfast was OMG big. Doug’s Day Diner. I couldn’t even come close to eating it all! Good lord!
But there ya go if you’re starving to death in Southeast Denver Metro. Sheesh!
There’s hash browns UNDER the steak. A lot of them. Insane. LOL.
But there ya go if you’re starving to death in Southeast Denver Metro. Sheesh!
There’s hash browns UNDER the steak. A lot of them. Insane. LOL.
High Plains Diner in Bennett, COBy the way. Breakfast was OMG big. Doug’s Day Diner. I couldn’t even come close to eating it all! Good lord!
But there ya go if you’re starving to death in Southeast Denver Metro. Sheesh!
There’s hash browns UNDER the steak. A lot of them. Insane. LOL.
By the way. Breakfast was OMG big. Doug’s Day Diner. I couldn’t even come close to eating it all! Good lord!
But there ya go if you’re starving to death in Southeast Denver Metro. Sheesh!
There’s hash browns UNDER the steak. A lot of them. Insane. LOL.
Where are the grits?
denverpilot
Tied Down
I love grits but they’re not much of a thing here. Truck stop diners like the one mentioned as an alternative have them.
denverpilot
Tied Down
Yeah we’ve done that one more than once. Kiowa-Bennet Road is only seven miles east of the house.
This platter was WAY bigger than theirs. It’s hard to catch the scale but look at the coffee mug and then the biscuit. LOL.
denverpilot
Tied Down
Don’t know if they do reservations but if folks don’t mind a diner style wait... also no idea how big a party they could seat. Strip mall sized place.
I literally just typed breakfast into yelp and went to the first place in range I hadn’t tried before.
Don’t know if they do reservations but if folks don’t mind a diner style wait... also no idea how big a party they could seat. Strip mall sized place.
I literally just typed breakfast into yelp and went to the first place in range I hadn’t tried before.
I’m pretty sure that breakfast would force me to redo the W&B for the Cherokee...
tspear
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Timothy
yeah, and my goal is to increase the UL of the plane not decrease it.
Last night, my wife and I went out for Italian. two years ago, I could eat my appetizer, finish my wife's and then my pizza. Now I barely finished my pizza with no appetizer. The downside of losing weight...
Tim
JOhnH
Touchdown! Greaser!
Oh Lord, I gained 3 pounds just looking at that. And NOW I'm hungry!By the way. Breakfast was OMG big. Doug’s Day Diner. I couldn’t even come close to eating it all! Good lord!
But there ya go if you’re starving to death in Southeast Denver Metro. Sheesh!
There’s hash browns UNDER the steak. A lot of them. Insane. LOL.
denverpilot
Tied Down
I’m still not hungry. LOL. I didn’t even bother with dinner. Ha.
Craig
Cleared for Takeoff
Nate: Need to be careful about eating regular, even if it's a very small meal. I can get off in to a work jag where I forget to eat and then feel about to flake out and suddenly realize that I hadn't eaten in more than 24 hours. Not good and it kinda messes me up for a couple of days. Even if I'm not hungry, I'll scarf down a couple of handfuls of cherry tomatos and some apple slices, and it works out.
denverpilot
Tied Down
Yeah I know. Not the norm but whatever number of pounds that stupid plate was was way abnormal for me. Ha.
Probably grab a healthy late lunch with the Mrs once she gets done being bounced around on an airliner arriving from SLC in an hour or so. LOL.
denverpilot
Tied Down
So just for more actual medical news instead of food stuff... LOL...
Steroids helped quite a bit. Fifth day without any pain meds, right side both leg and hand regained some function which is probably the first “uphill” direction I’ve seen in a year. Can’t complain too much about that.
Because the steroids are an ASAP order thing, I have a message in to ask “what’s next” for the neuro and to get the actual results of the MRI and changes seen.
Steroid side effects like alternatively bloating and being dehydrated suck but normal for me. Just keep drinking water... it eventually straightens out. Pants fell off on schedule again a day afterward. Ha. Fully buttoned and all, just go thru a dehydration period after like last time and waistline disappears. Ha. So funny. “There they go!” Lol.
Getting back some function is as weird as losing it. Makes you acutely aware of how things are moving again. So odd. First night of the steroids I realized I had a minor shin splint then simultaneously realized I hadn’t felt that shin in six months. LOL. Weird weird stuff.
“Ow that hurts a little... wait a minute... hey, that hurts a little!” Hahaha.
Apparently I was also lucky enough to earn two complete nights of normal sleep the last two nights, which is something akin to a minor miracle, in and of itself, so no complaints there either!
Hate the waiting part. Want to know what the heck they saw in the MRI. If no news in another hour or so I’ll leave another message for the other assistant... lol.
Trying not to be THAT patient...
Anyway. Nice to have some of the hobble back to normal. A bit off balance now but it seems like that is my brain trying to figure out why the right leg and foot are back to doing more stuff than they were.
Give that a few days to see how the noggin reacts to it longer term. Assuming it sticks around, of course. Who knows!
Steroids helped quite a bit. Fifth day without any pain meds, right side both leg and hand regained some function which is probably the first “uphill” direction I’ve seen in a year. Can’t complain too much about that.
Because the steroids are an ASAP order thing, I have a message in to ask “what’s next” for the neuro and to get the actual results of the MRI and changes seen.
Steroid side effects like alternatively bloating and being dehydrated suck but normal for me. Just keep drinking water... it eventually straightens out. Pants fell off on schedule again a day afterward. Ha. Fully buttoned and all, just go thru a dehydration period after like last time and waistline disappears. Ha. So funny. “There they go!” Lol.
Getting back some function is as weird as losing it. Makes you acutely aware of how things are moving again. So odd. First night of the steroids I realized I had a minor shin splint then simultaneously realized I hadn’t felt that shin in six months. LOL. Weird weird stuff.
“Ow that hurts a little... wait a minute... hey, that hurts a little!” Hahaha.
Apparently I was also lucky enough to earn two complete nights of normal sleep the last two nights, which is something akin to a minor miracle, in and of itself, so no complaints there either!
Hate the waiting part. Want to know what the heck they saw in the MRI. If no news in another hour or so I’ll leave another message for the other assistant... lol.
Trying not to be THAT patient...
Anyway. Nice to have some of the hobble back to normal. A bit off balance now but it seems like that is my brain trying to figure out why the right leg and foot are back to doing more stuff than they were.
Give that a few days to see how the noggin reacts to it longer term. Assuming it sticks around, of course. Who knows!