Grounded indefinitely

We all are pulling for you....

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bnt83 said:
I've been on Rituxan before probably 8 infusions total, the infusions took many hours, thank god the IV Benadryl always helped me sleep through it.

Only once did I ever get a little itchy.
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Ooh! I do get sleepy on Benadryl too. I forgot that possible nice side effect. Ha.

Some people I know don’t...

If it itches I’m gonna be a crab-ass every time I have to do it. I HATE ITCHING! Haha.

Thanks for the PIREP!
 
Nate,

I missed this thread initially. Glad to see you back here (POA), sorry about the diagnosis.
You comment about goals makes sense, glad you hit your big ones. Both my wife and I have fewer "big" goals, mostly a lot of smaller ones.
So last night, after reading your thread, my wife and I started researching booking a couple of trips we have wanted to do. Just need to finalize some details and we will be buying some tickets... We have committed to doing at least one "bucket list" item a season.

Tim
 
tspear said:
So last night, after reading your thread, my wife and I started researching booking a couple of trips we have wanted to do. Just need to finalize some details and we will be buying some tickets... We have committed to doing at least one "bucket list" item a season.
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Yeah man. Just do stuff. I mean don’t go broke doing it or lose your job or anything ... unless that’s what you want... haha... but yeah.

When my dad passed we did the same thing. Booked some stuff we kept saying “Oh we should do that sometime...” and we’ve had a blast.

One big one for us was this... www.therockboat.com and now we’ve been all but one year since dad passed. Not cheap but when do you get front row seats for 30 bands by just walking up, cold adult beverage already in hand? Ha. It’s truly awesome.

She does have a Europe trip in the works for our 25th Anniversary and we do have to wait to do final booking for a bit to see if the neurologist and such say it’s okey-dokey for me to be doing such things. And I’m dreading an ocean crossing flight with a stiff neck, back, arms... well you get the idea.

Screw First Class even, if any airlines sold a “sedated and revived at destination” ticket, I’d probably buy it. Haha.

And one of the companies she wants to use will book all tickets and ground transport for the entire trip completely... but they’ll only book coach seats. This floors me since I’m sure many folks doing business with them would happily pay for business or first, especially if they have any back or neck issues. But it is what it is. We may have to book it all separate. And not really liking the price tags on those tickets... but we’ll see.

She’s had me saving money for the thing for years now. Not kidding. So I suspect it’s happening whether old busted Nate wants to whine about his sore neck or not. Ha. She’d probably shoot me with a tranquilizer gun and drag me on to the plane herself. Hahaha.
 
@denverpilot

Well, I am in France now on vacation :D
If you dislike commercial flying and have the time, consider a cruise ship repositioning cruise. So one direction you can pick up a cruise ship for roughly a week from NYC or two weeks from FL. My parents ave done this going to Europe multiple times; makes the trip over a lot easier. My parents say the repositioning cruise is cheaper than business class. If you google/bing repositioning cruise you will get all the ads, and I am sure you can find a descent deal.

Tim
 
tspear said:
@denverpilot

Well, I am in France now on vacation :D
If you dislike commercial flying and have the time, consider a cruise ship repositioning cruise. So one direction you can pick up a cruise ship for roughly a week from NYC or two weeks from FL. My parents ave done this going to Europe multiple times; makes the trip over a lot easier. My parents say the repositioning cruise is cheaper than business class. If you google/bing repositioning cruise you will get all the ads, and I am sure you can find a descent deal.

Tim
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Yeah, she says she can’t take that much time off of her work. But I’d do it and just sit and wait for her... Hahahaha.
 
Glad to have you back Nate. Keep fighting.

denverpilot said:
One big one for us was this... www.therockboat.com and now we’ve been all but one year since dad passed. Not cheap but when do you get front row seats for 30 bands by just walking up, cold adult beverage already in hand? Ha. It’s truly awesome.
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This means my good friend since Kindergarten has photographed you. He is one of the official photographers on all the rock cruises for Sixthman.
 
Worked in Fifth Element.
 
denverpilot said:
Yeah man. Just do stuff. I mean don’t go broke doing it or lose your job or anything ... unless that’s what you want... haha... but yeah.

When my dad passed we did the same thing. Booked some stuff we kept saying “Oh we should do that sometime...” and we’ve had a blast.
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I hear you on the advice to not put stuff off. As you know, I had my own medical scare a number of years ago. Although I was able to get my medical back and was able to return to work, thanks to Dr. Bruce, when the opportunity arose a few years later, I hung it up. I had always talked about retiring at 60, and I did. I have no regrets about that. On a recent trip to Africa, the pilots of a couple small charter airplanes, a Cessna 210 and a Navajo, let me "steer". It was fun and nostalgic, but I would not want to go back to doing it for a job.
 
denverpilot said:
That’s really cool. We joke that he’s the hardest working guy on the boat. He knows all the regulars and such... and he’s really good at what he does!
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He's a great guy. We get to catch up from time to time but he is really busy with that stuff and he gets to do Cubs stuff and things with Bill Murray. Rock and roll life style I tell him. Hoping to see him next weekend before the Cubs game but not sure if he's in town. In another thread we were talking about remembering phone numbers. I still remember his home phone from when we were kids.
 
NealRomeoGolf said:
He's a great guy. We get to catch up from time to time but he is really busy with that stuff and he gets to do Cubs stuff and things with Bill Murray. Rock and roll life style I tell him. Hoping to see him next weekend before the Cubs game but not sure if he's in town. In another thread we were talking about remembering phone numbers. I still remember his home phone from when we were kids.
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I don’t know if he’d agree as an employee and wouldn’t ask except in private, but at least from the outside as a customer, Sixthman really has their stuff together. I have contacted them for various minor things over the years and I have never had to make a second contact for ANYTHING, every contact is handled immediately by their staff.

They appear to have a very empowered system. Hasn’t seemed to change much since Andy sold the company to NCL.

It’s sad I don’t have it being the data packrat that I am, but we received the first email for the very first charter from him from his AOL account 20 years ago or so. We also went to events in Steamboat when they mixed the boat stuff with land based stuff, but the boats rapidly became the business’ focus, can’t blame them. Great idea.

The Steamboat thing was called The Rock Slope, of course.
 
What kind of nerd are you that you don't have something from 20 years ago?vwhen I say nerd I mean that the best possible way, you're a ham too. Disappointed!

I'm married to a nerd so I can call others nerd. :)

Fellow ham (kd8jhm)
 
denverpilot said:
Well I did play more with microwaves than HF... hahaha. Never stood in front of the 10 GHz dish though, that power level made me nervous. :)

As far as “visible symptoms”, I’m walk-in’ a little funny due to the numbness above and below the knees. Mostly because it “feels weird” not because the muscles don’t respond. It’s more like a “distraction” when walking than anything.

Currently playing a little early hooky from work to hear wifey sing the anthem at the Rockies second game of the doubleheader. They apparently lost badly to the Giants in the earlier makeup game. Ouch.

I’ve noticed like a lot of folks with neuropathy I’m tending toward wearing long pants and solid shoes even when it’s hot out in case I whack my leg on something or foot and don’t feel it. A little cloth or good shoes goes a long way to not having an odd injury you can’t remember getting. Ha.

Makes going to the game in sunshine a little toasty, so I’ll enjoy the afternoon overcast and breeze today. :)
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I'll never forget the feeling that penetrated my entire body when I was zapped with microwaves, while relamping obstruction lights on top of the old Newark Control Tower. One night back in the 80's, my co-worker and I had a work order to repair/replace bulbs. They were supposed to temporarily shut down the radar, but I know what I felt all throughout my face and body. NOT GOOD!

Well, I wish you the best with this challenging health issue. I've never heard of it either, only MS (had a neighbor with MS when I was a kid).
Take care.
 
So sorry to read this. I wish you all the best, and you have always been such a huge help with theory and tips, and all. You are one of the first usernames I learned when I joined here, where I think “oh good, denverpilot responded”.

Hang in there! Best wishes.
 
Boring update but good I guess.

Got pharmacy approval for the expensive drug for the infusions. Whoever is in my insurance pool, your rates are going up. Buy Genentech stock. LOL.

Still haven’t heard on where or when. I’m sure that’s a cluster, due to what I know about how they’re going to try to do it and what my insurance likes. Ha.

Symptoms about the same. Over did it bad on Sunday out in the sun mowing and paid for it Sunday night. Ouch. Also been working too much this week already and a late night until 1AM and that isn’t helping recovery.

Just figuring out where the stall horn goes off on my body now and where the break is. Ha. It’s quite a bit sooner than it used to be. Sigh.

Also just due to my normal klutziness and stepping in a rut, I managed to fall down in my own driveway this morning trying to drag my empty trash can down a steep incline of dirt and gravel. Moron.

I only mention it because, and man is this weird, it proved that only my top layer of light touch sensors are numb in my legs. Driving my kneecap into 3/4 inch minus rock and dirt on my driveway hurt! Haha. So I guess that’s a good thing. I can’t really injure myself without knowing it other than maybe a minor scrape or cut. Then even weirder when your natural reaction is to rub it, you don’t feel much of that at all. LOL. So strange.

Been in the office as much as possible this week, so having to catch co-workers up on where I’ve been. They’re always kinda amazed when you say you got diagnosed with something only 1400 people a year are in the US. And that most people’s way of finding out is that they’re paralyzed in a few hours and in the ER. It’s still creepy to me that somehow I dodged that bullet.

Going all hippie on y’all too. Okay not really but the ribbon for Transverse Myelitis is blue, and one of the support groups calls themselves the Blue Man Group (what else?! Ha!) so in that group a little girl makes a combo bracelet and necklace that match to raise money for her dad who has TM, so I bought a set.

Karen has the necklace and I have the little bracelet. So folks can make fun of my new jewelry all they want, I don’t care. Little girl making them to help her daddy out.

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Will get a photo of Karen’s necklace later. It’s nothing fancy but she likes it.

I knew I’d overdone it on Sunday when I couldn’t pick up two cinderblocks to chock my trailer. That really ticked me off and made me sad. For whatever reason spinal cord and autoimmune patients get a double whammy in not being able to handle high heat or humidity. Thankfully no humidity here. But was out in the sun way too long.

I could go lift those things now, easily. But not Sunday late afternoon. Mixture of hand pain and exhaustion.

Was angry about it so stomped inside after kicking them under the trailer and closing it up after towing it into the fenced part of the yard. Told Karen I wasn’t super mad but it was frustrating.

My buddy with this crap for 11 years told me to be careful and stop pushing it. Okay okay. I will not do that again. Too many hours in the sun. But the yard got fully mowed for the first time this year. Yay.

Oh yeah. Probably posted that on FB but not here. How I got the yard mowed was Mr. ZTR. Ha. Bought a used commercial low end ZTR and we all had that discussion a LONG time ago and y’all told me to get one. Well with the tractor not being power steering, it was time.

ZTRs kick ass. Should have bought this five years ago. The only bad part is how damn rough my land is. I can’t go anywhere near as fast as the ZTR is capable of. Holy hell it’ll move on flat ground. Wow.

Does a better job mowing even my mostly weeds and tall prairie grasses compared to the brush mower on the tractor three point. And 60” with 3 blades is way better than 48” with one big blade. Property looks better than it ever has.

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Sorry Nate, you're finding out that despite all we know, the human body is essentially very mysterious. Hope it gets better. Don't hurt yourself doing dumb **** stuff like mowing the lawn or hauling your trailer. Just isn't worth it. You might even think about selling the place and moving into a condo. Less work. Good luck, and may the Force be with you.
 
denverpilot said:
Karen has the necklace and I have the little bracelet. So folks can make fun of my new jewelry all they want, I don’t care. Little girl making them to help her daddy out.
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I think the bracelet is pretty cool!

Hang in there man, and thanks for the updates.
 
Nate, you have a pretty big house, is it pretty easy to navigate? What about if you needed a wheelchair?

My brother just blew a huge wad of $ on a house, built in the late 90s, 5000 square feet, 5 beds 4 bath, beautiful. The master bathroom upstairs was the only one with a door that my wheelchair could fit through. Not a big deal for me but it would be for others.

My grandpa lived to 92 years old and never spent a day in an old folks home, a part of that was clean, open, accessible house they retired in. The neighbors eventually took over mowing the lawn and blowing the snow, but he gave them well used and cared for equipment to use.

My parents house is a nightmare for me, I hate staying there.
 
steingar said:
Sorry Nate, you're finding out that despite all we know, the human body is essentially very mysterious. Hope it gets better. Don't hurt yourself doing dumb **** stuff like mowing the lawn or hauling your trailer. Just isn't worth it. You might even think about selling the place and moving into a condo. Less work. Good luck, and may the Force be with you.
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bnt83 said:
Nate, you have a pretty big house, is it pretty easy to navigate? What about if you needed a wheelchair?
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We’ve talked about the house situation. This place would not work for a wheelchair, etc. we decided if symptoms stay the same we’ll stay here at least through the death of the big dog if we can. He’s 90 lbs and needs some running room, not to mention he thinks normal volume for barking is loud enough to be heard many acres away. He’s outside all the time when he can be. The little dog is a people dog and wants to be wherever we are. He’s seven so we may have to do that sooner if something comes up with me, but for now we’ll be here.

In the post-Dino the doofus era, it’s virtually a made decision already to change houses. But we’ll see.

As far as the human body mystery goes, the joke amongst TM patients is that when asked what your symptoms are like, the correct answer is, “Today?” LOL. Stuff changes constantly with nerves.

Obviously I haven’t had any paralysis, but read a fascinating thread last night about folks regaining the use of paralyzed limbs and it’s just wild.

Sometimes takes years and then one day a limb that wasn’t working at all starts hurting like crazy (nerves with damage reconnecting almost always present as massive pain to the brain, the returning signals don’t make any sense to it) and then starts slowly learning how to move. Of course anyone experiencing that usually gets themselves to physical therapy or neuro therapy right away, and then a painful process of teaching the muscles to move again, but most get some of even all function of the limb back in a couple of months. It’s crazy. Often they don’t get rid of all of the pain, the nerves still have damage, so they’re not paralyzed any more but they do hurt.

There’s a story in our group of a very young man going through this with his legs. He warned himself off of all painkillers and neuro drugs to see if he really had some motion back, and he did. Pain is awful for him but he’s up and walking in PT after being in a chair for seven years. TM is so strange like that compared to many other acute spinal cord injuries. He’s decided on Botox injections for the pain instead of the other drugs because they were making it impossible for him to walk and a zombie all day. (He was on well over 3000mg of Gabapentin a day, besides other things.)

There’s also a guy who not jokingly says he has PTSD from his relapses. Because every single time his relapses paralyze him again for a few months. He feels the relapse coming on, gets to an ER for IV steroids and tries to get the attack stopped. Never quite works and eventually he’s paralyzed. Then within about three months the inflammation lowers and he can move limbs again. Five times now.

Anyway stories like that from the group keep me damn humble and my condition in perspective. There are some incredible bad asses dealing with whatever this disorder throws at them. I can’t even imagine that guy who’s been paralyzed five times. You’d wonder every time if it was permanent. Totally crazy stuff.
 
denverpilot said:
...one of the support groups calls themselves the Blue Man Group (what else?! Ha!)
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One of my closest friends was recently diagnosed with pancreatic cancer. On if his support groups call themselves Yellow Man Group because of their jaundice.

Gotta love humor like that.
 
I haven't been around in a long time and this is the first post I read when I get back. Wow. I hope you can keep the positive perspective. Best wishes.
 
@denverpilot im sure you already know this but just in case... zero turns that don’t have suspensions rely on the tires and seat for dampening the ride. Keep tire pressures low (10 psi) and if yours doesn’t have a suspension seat get one.
 
TCABM said:
One of my closest friends was recently diagnosed with pancreatic cancer. On if his support groups call themselves Yellow Man Group because of their jaundice.

Gotta love humor like that.
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Ouch. Haha. Pancreatic cancer is a rough diagnosis. I’m sorry your friend has that.
 
denverpilot said:
Ouch. Haha. Pancreatic cancer is a rough diagnosis. I’m sorry your friend has that.
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Yeah, but it’s not like Ebola. At least he’s got that going for him :).
 
TCABM said:
Yeah, but it’s not like Ebola. At least he’s got that going for him :).
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Hahaha yeah. Probably hear lots more morbid humor from him if he’s keeping a good outlook. Here’s hoping he beats the odds.
 
Other fun today. Specialty pharmacy called to work out how to deliver the drug to me. I had no idea where the doc wanted it shipped but after answering patient on boarding questions, they conferenced in the doc office and got it figured out. Total call time one hour, fifteen minutes. Waste of time.

But that led to me learning that the medical insurance is being a pain in the ass and hasn’t approved the office visit for the infusion yet, so they asked the pharmacy to put the delivery on pause. Argh.

They’re hoping to hear back on the pre-approval today. If we EVER get these going it’ll be a lot simpler the next time(s). LOL.
 
denverpilot said:
Other fun today. Specialty pharmacy called to work out how to deliver the drug to me. I had no idea where the doc wanted it shipped but after answering patient on boarding questions, they conferenced in the doc office and got it figured out. Total call time one hour, fifteen minutes. Waste of time.

But that led to me learning that the medical insurance is being a pain in the ass and hasn’t approved the office visit for the infusion yet, so they asked the pharmacy to put the delivery on pause. Argh.

They’re hoping to hear back on the pre-approval today. If we EVER get these going it’ll be a lot simpler the next time(s). LOL.
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Might be faster/easier if you went to Canada or Mexico. LOL
 
flhrci said:
Might be faster/easier if you went to Canada or Mexico. LOL
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Yeah. Well got more info later. The real reason they’re all nervous is my insurer simply REFUSES to a pre-approval determination. They’ve never heard of such a thing.

A friend suggested I call and ask for a manager and use words like “insurance commission” and “bad faith”.

In the meantime they have this set up in such a way that it shouldn’t matter to the medical insurer at all about the drug, it’s already approved via the required process with the pharmacy that’s used by the medical company.

But everyone is really confused by the lack of a pre-approval and either a yes or a no.

I think we’d have a pretty good case if they try to drop a large bill on my head that at least three people have tried to get a determination out of them and a lack of response isn’t appropriate. If the answer was “no, not covered” they needed to say that.

So, the scheduling is once again moving forward. With a threat of about a $38,000 bill hanging over my head.

Let’s see. Continue weeks past when the doc wanted this started to prevent possible relapse with this game, or take whatever the EOB says and document that they refused to answer and run with it? Lovely BS we have going on here.

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I have at least a few days before the procedure so l’ll entertain myself by being the politest ass possible on the phone and see if I can waste many hours and get a damn answer.

Part of the problem is, I don’t believe under the hood this is an actual insurance plan. I believe it’s self-insurance of a large medical company for employees and spouses, and it’s managed for them like an insurance plan by, ironically, one of their competitors. Their MO is that they have negotiated rates with any doc in network and they demand procedures be done in their facilities. Which is fine. The question is: Is this procedure with this drug covered?

The pharmacy seems to think so. The medkd side simply refuses to answer. They’re essentially saying, “Do the procedure and find out on the EOB afterward.” Which is insanity when you’re talking a $38,000 drug.

(For those playing along I had found info previously that they charge about $250,000 retail and charged another person’s insurance $150,000 per treatment in the real world. It was interesting to hear that my pharmacy got that negotiated down to $38,000. I bet the maker counts the entire difference as a “loss” and tells the world how nice they are to make the discount. Hahaha.)

My neuro’s assistant apparently lost it on them yesterday. LOL. I got that info this afternoon from the infusion nurse and laughed. She’s not to be trifled with. I know I wouldn’t mess with her! Haha.

Stupid ass paper pushers. Just say yes or no. The doc probably will call to chew some ass if you say no, but also can move on to alternate plans while she fights with you. Grrrrr.
 
I would suggest that your friend who suggested the two words no insurance company wants used, "bad faith", is making a darned good suggestion. See what happens.

Another friend is on 3000+mg of Gabapentin every day? My wife is on 3200 mg a day, plus a bunch of other stuff for peripheral neuropathy. Not related to diabetes. No idea what the cause is, but she is on a bunch of medications for it. She has NO side effects from the Gabapentin, although she does wonder if that's why she has trouble getting up in the morning. Oh, and no, she does not have a medical and has no interest in learning to fly. Crazy thing is that all this stuff she takes has no impact on her daily life. If she doesn't take it, on the other hand, look out.

Keep up the good fight. Best of luck to you, both with the condition and dealing with the insurance company.
 
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