Grounded indefinitely

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.

Yeah I’m on a “whopping” 300 mg three times a day. So can either call it that or 900 mg, however one likes to arrange the numbers. It’s likely I’ll talk to the doc about raising that in the evening only. It’s a “works best if it’s always in your system and has been there for a while” drug. Not one you just take as needed. But I could probably not bother with it at all in the morning and only take it from afternoon on if it were the other sort.

Reports from people in my online TM group vary WILDLY with that drug. Some report horrid side effects and others report zero. Some say it helps others say it does absolutely nothing for them.

For me, it’s “different” than the synthetic opioid but “takes the edge off” the burning sensation while not doing anything at all for the pain I associate with the muscle atrophy in the one big muscle on the opposite side of your palm than your thumb. But I don’t get that second pain too often unless I’m really overdoing it with my hands all day. So in total it works pretty well. It’s just “not quite there yet” on late day dosage level.

Most of the time it doesn’t matter so I debate whether to even ask about upping it in the evening, but I see it commonly done that way in the group.

I think she’s right about the morning sleepiness. A number of people report that they’re more prone to sleep when on it.

The most common side effect is feeling off balance and therefore being clumsy. I’m naturally clumsy so my mom joked, “Nice knowing you!” Hahaha. Love you too, mom! Haha.

Definitely have felt it. It’s... interesting. They say they ramp you up on the stuff because it messes with some nerves for balance and such so if they popped you right to what your wife is on, you’d probably just fall over. Haha. Your brain figures it out after a bit then they can change the dose. But the first time I walked down my stairs. How to describe this...

Never once did I feel like I was going to fall down. But I could tell it was like a feedback loop where the sensors were either weak or lagging, if that makes sense to the engineers here? All four limbs were simultaneously over-correcting like an early flight student pumping the yoke on landing. But each was contributing correctly, just too much. Ha.

So your arms and legs are flailing a bit as you walk down the stairs but you’re still in good balance and not feeling or fearing falling at all. It was sooooo weird. And I started laughing my ass off halfway down them at the landing. It had to look hilarious. Now quite a while later that sensation of readjustment has faded significantly. But at first... it was wild.

And yeah right now I would probably be a total crab-ass if I wasn’t taking it. How to describe it? The hands always hurt but in different ways. The Gabapentin for me at the moment anyway, just knocks the nastiest part of the touch sensation problem off (can’t stand to touch certain textures... others are fine and just kinda “buzz” a little. The rougher the worse for the most part...) so it doesn’t make me want to cringe or retract my hand. Especially the right one. I can almost ignore the left hand issues altogether.

Anyway, totally wild these pharmaceuticals. And of course absolutely FAA disapproved as far as I know. Anything that messes with brain sensors, they’re not particularly keen on. Can’t blame them.

No other side effects from mine so far other than maybe a tad sleepy if I take it on an empty stomach in the morning. The opioid had typical opioid side effects and I didn’t like or want those long term.

Those who have problems or no help from Gabapentin often find Cymbalta or Lyrica work for them, but man the side effects on those are really nasty if you get them.

I swear, at first the neuro just picks the one with the lowest reported side effects or long term problems and if those don’t work they go to the nastier ones. It’s a dice roll at first for nerve pain and then secondly a dice roll for side-effects. Nobody’s experiences or stories are alike.

Good to hear it works for her. My early tests that didn’t make sense to the neuro were for peripheral neuropathy and that all came back negative. The nerves out in the extremities are quite healthy.

They’re also hyper-reflexive which meant I kicked the crap out of the neuro’s stool when he did the knee reflex test you all know. Funny at the time but it really is a big sign the problem is in the spinal cord apparently. Interesting medical trivia you learn along the way during a diagnostic workup.
 
Nate,

No clue on these drugs. However, besides asking the doc for a higher dose in the evening, rethink the works better if always in your system. This is not an absolute; and people do react differently. You may be able to just take the afternoon and evening dosages and skip the morning.

Tim
 
Gaba-pentin is an analog of a molecule nerves use to talk to each other and to muscles, Gamma Aminobutyric Acid. Gaba-pentin can bind to the receptors for this molecule and block them. Its efficacy varies because we're all wired differently. Mrs. Steingar was prescribed the stuff, but didn't like it. I'd like to put a moratorium on any drugs who's actions involve things I teach about in Introductory Biology.
 
Nate, what you're describing about moving around reminds me of a guy I used to work with at the Jag shop back when I was in college. He had muscular distrophy, and was able to still work at the shop and did well, but he was also usually paired with one of us kids. It was good both ways - he had trouble with some of the physical movements, and could impart his knowledge and wisdom.
 
We’re up to four hours worth of phone calls in two days, but finally... only one more call left to confirm infusion on Monday.

I have to say, this process is bad enough if you’re relatively healthy. I can’t imagine being in a wheelchair with pain making all these phone calls.

It’s downright cruelty in that case. Not just because you’d have to use a voice dialer and scream long strings of curses at it when it got the phone number wrong. LOL.
 
We’re up to four hours worth of phone calls in two days, but finally... only one more call left to confirm infusion on Monday.

I have to say, this process is bad enough if you’re relatively healthy. I can’t imagine being in a wheelchair with pain making all these phone calls.

It’s downright cruelty in that case. Not just because you’d have to use a voice dialer and scream long strings of curses at it when it got the phone number wrong. LOL.
Imagine how it would be if it were a Federal agency (e.g. "medicare for all"). At least the words "bad faith" mean something to a corporation, but not so with the guvmint.
 
I typed up a post about the first drug infusion. The battery went dead on the iPad.

Five hours. No significant side effects other than itching behind and in my ears. Extra Benadryl beyond the required amount knocked that off. Children’s chewable even since it’s the correct dose at that point in the infusion. Grape. Bleh. Should have had her stick it in the IV. LOL!

Infusion continued at normal rate. Protocol if the itching didn’t subside would have been to go to half rate and an extra hour or so by then.

The infusion clinic bought me a sandwich for lunch and gave me the secret info on the back door unmarked entrance for people doing infusions to the office.

Kinda like having the password to the speakeasy.

It’s also closer to the restroom when you’re dragging an IV pole with you. First time ever doing that today. I’m sure many of you have done that but it was new to me.

Having a useless degree in left handed puppetry might have helped a bit at the urinal and washing up afterward if I had one, since the right hand had the IV line in it. LOL. But it all worked out. Hahaha.

Drinking plenty of water to flush out all the normally nice but potentially naughty cells they killed today. Brain cells never were great at what they did, but they don’t appear to have killed any of those.

Or perhaps y’all will notice that before I do. :)

Now I have just about nothing to defense naturally against bacterial infections so we’ll have to be watchful for those. Recommended I don’t hang around any actively sick people and GTFO of wherever they are, just try not to be rude about it. :)
 
76144a2aba198faba5977bfb5de34a0d.jpg


My happy infusion face. Pretty decent recliner. Helps bring out the double chin all leaned back like that.

Had my Challenge Air Volunteer Pilot shirt on since it makes me smile too. Find the local group doing that and take an autistic kid flying.

The smile won’t wipe off your face for a long time.
 
Never heard of challange air. I will look them up, I have a couple of friends with autistic kids. It never occurred to me they might be interested in flying. I will have to investigate....
Glad the first infusion went well.

Tim
 
Holy crap, Nate. I've been wondering about you, and I hate to hear the reason for you absence. This is a bum deal, brother, but I love the positive attitude. I wish you all the luck in the world with this, and I really hope it's something that can be improved. I don't know if you are a praying man, but I am, and I will be praying for you whether you like it or not. Hang in there, bud.
 
Nate, I'm glad to hear that the drugs didn't cause any nasty side effects and that it was mostly just sitting around. Stay away from people other than online - we can't get you sick through a keyboard.

So does this basically leave you without an immune system for [X] days/months/years?
 
Everyone is different but I never changed anything from day to day routine while on/post treatments, I don't have a spleen either. So no spleen + immunosuppressants of various labels, went to grade school, high school, played outdoors in the dirt, worked full-time for years etc, never really seemed to bother me being around others, never really had flu issues or anything.

There was one overnight hospitalization for eppiglotitis but I don't remember if it was timed anywhere near immunosuppressant treatment.

When I got deathly sick in 2009 I'm pretty sure it had been at least a year since last immunosuppressant treatment.

Maybe with age it would, hopefully never find out.

Lotta luck involved
 
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Nate, I'm glad to hear that the drugs didn't cause any nasty side effects and that it was mostly just sitting around. Stay away from people other than online - we can't get you sick through a keyboard.

So does this basically leave you without an immune system for [X] days/months/years?

Have a light cough today and a little “flu like symptoms” (tiny nausea) that they warned me could happen. Body is basically trying to get rid of all the cells they killed. Lots of water.

Immune system, partial. It’s targeted to white cells called beta cells so the main thing they’re killing off is the body’s immune reaction to mostly bacterial infections but not so much viral.

However it’s all suppressed and I won’t pretend to know what those specific cells really do. Perhaps Prof. @steingar knows ha.

They basically told me to jump on bacterial type stuff like respiratory infections quickly and not to worry too much about viral.

Also they said there’s zero point to getting vaccinations, since the body won’t be able to build antibodies and they need to know if I need a specific vaccination so it can be scheduled right before the next 6 month maintenance dose of the immunosuppressive drug so the body can do something with it.

Apparently the beta cells regenerate slowly over the six month timeframe and each dose kills them off again.

So that’s all I know/understand on that part but I haven’t done any reading/investigation on the details of this part yet. That’s a pretty common late night activity is searching for medical docs on all of this hahaha. Exciting stuff.... not... :)

The cough and slight flu like symptoms COULD mean I had a light infection of something before the infusion and if so, it’ll go nuts. So I’ll know for sure by how I feel tonight/tomorrow. If it’s that, I’ll head to urgent care and explain the situation and get hammered with whatever antibiotic they recommend. But I don’t think it’s an infection. Just monitoring right now like the paper says to do. :)
 
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What they're doing is trying to kill the immune cells that media the autoimmunity. B cells make antibodies.
 
Scientifically this is all fascinating to me. Personally it's terrifying. But let's focus on the science. Keep up on the not-being-sick.
 
Nate, you sound like a living medical experiment. LOL You also look drunk in that picture. :D Or overly happy? Dunno.
 
Scientifically this is all fascinating to me. Personally it's terrifying. But let's focus on the science. Keep up on the not-being-sick.

Technically I’m always sick now. Well my immune system has decided at least once to attack me instead of help me. Do you call that “sick” or not? I dunno. Ha. Not normal! :)

Nate, you sound like a living medical experiment. LOL You also look drunk in that picture. :D Or overly happy? Dunno.

I was just smiling for the photo but I had 100 mg of soulmedrol and some amount of Benadryl pushed in via IV and the other “real” drug started for a few minutes by then. Probably the Benadryl. Ha. Dunno. :)

I wasn’t UNhappy by any means. And the four weeks of phone calls to get INTO that chair... I probably was happy that was over with. ;)
 
So, still 2 years or so to know if its helping or not?

Crap shoot. May never know. Some large number of people are “idiopathic” meaning docs don’t know WTF caused the initial attack. All this drug is doing is killing off my immune system so relapsing/remitting versions of MS and cousins don’t try to do it again.

It’s completely a statistics game.

Anyone diagnosed after 40 with a cousin to MS with no known cause has a 40% chance of it showing as MS on MRI (meaning mainly that new lesions show up, especially if they show up in the brain away from the brain stem) in ten years.

Anyone who’s had a TM attack that affected more than three vertebrae (mine is seven) that is NOT caused by MS, NMO, or an undiscovered cancer only has a 5% chance of relapse.

And then there’s stats for gender (males are generally better off on the nasty underlying causes like Neuromyelitis Optica but equals in ideopathic TM), race (more black people than Caucasian or Asian descent per capita with the disorder overall, but not by huge margins and with it all being so rare, statistics may be lying a bit here), stuff like that.

Then there’s the recovery numbers. And those are thirds. 1/3 experience a full recovery from neurological symptoms, 1/3 a partial recovery, and 1/3 no recovery at all. That one is all up to your spinal cord and how much damage there is to myelin sheaths and how long the damage is on each individual nerve. Nerve regeneration in younger healthier folks is about 1-3mm a year. But is my damage little short things in that little blob of white that an MRI can see, or is it myelin gone for all seven vertebrae. The imaging tech can’t tell.

Unfortunately in the “get a quick fix” world there isn’t any.

Treatment for an acute Central Nervous System attack is mass corticosteroids to stop inflammation and knockout punch the immune system back to behaving.

Long term treatment is two fold:
- Pain management. Some people have neurological pain, some don’t. And it can get better at the slow rate mentioned above.
- Keeping relapse of the immune system at bay. Kill the cells (as the Prof said) that make antibodies. Because somewhere along the line the wrong antibodies went after the wrong cells and nailed the nerve cells thinking they were an intruder — is the best current theory.

The theories go a LOT deeper than that and discuss specifics about “channels” like the water channels and calcium channels and all sorts of other things being investigated by smarter people than me.

So you wait. And have MRIs. And see if the damage gets bigger or smaller. And even in some people with normal looking spinal cords on MRI they can still be so damaged they’re paraplegic or quadriplegic. The images just are not accurate enough.

Other tests you do:

Look for other autoimmune disorders. They often come in pairs or triples. Once your immune system has gone insane it’s often insane across the board. Lupus, IBS/Chron’s, Sarcoidosis, you name it, you might have it.

Look for antibody evidence. I’ve had a bunch of tests for these. MS and NMO leave some telltales and so far I don’t have them, BUT... 40% of NMO patients don’t show antibodies unless having an attack. There’s another one I was tested for also that is new and Mayo found it in 2015. One lab didn’t even know what the test was. When we found it, they sent it to Mayo anyway it looks like, by the number of days it took. Also not cheap for a blood test. $700.

Additional tests can be done or spinal fluid for signs of viral or other infection if warranted. Since my attack had essentially stopped before we found the damage, there was no point. Anything got in there it was long dead and spinal taps still hold some risks so the doc said there wasn’t any value in it.

And then there’s the acute attack issues. Any sign of major neurological changes or vision changes my standing orders are to go immediately to the closest ER. Explain I’m a TM patient. Tell them in no uncertain terms to pave their on call neurologist and to start IV corticosteroids immediately. This is always the best case for long term outcomes.

Side story. Want to know how crazy important that is? This is exceedingly rare but one member of a support group I’m in has been a quadriplegic five times and recovered fully five times. He’s admitting lately that he has PTSD from it. Paralyzed, hospital, steroids, PT, out walking in two months. Insanity. Others have saved eyesight or had reversals of paralysis symptoms. It’s all about the inflammation. Make it go away as fast as possible and stop the immune system incorrect response as fast as possible.

Anyway finally there’s the long term and that’s just monitoring. MRIs fairly often. Nothing changes? You’re probably idiopathic and MAYBE not relapsing/remitting.

You might be a single time person and not a frequent flyer. You and your doc get to decide via statistics whether or not to take you off of the immunosuppressant drugs and what your risk of a relapse that could paralyze or kill you is. Want to come off in two years? Five? Ten?

Roll the dice and take your chances. Is the drug hard to get or expensive for you? Do you have little kids? How’s your spouse doing? Is the life insurance policy coming due? Hahaha. Kidding maybe on that last one, but it makes you grab yourself in the mirror and decide, that’s for sure. Having a relapse actually makes the diagnosis and decisions easier. Or if you have horrid side effects to any of the drugs and there’s no substitutes left.

A very large percentage of people diagnosed with any of this MS or cousins stuff find out the first time by lying in an ER paralyzed. I got lucky and missed a very big bullet there with something aggressive enough to inflame seven vertebrae worth of spinal cord. The first neurologist said he was amazed I walked in the door after he saw it.

I’m going to enjoy the hell out of whatever is left, whether that’s a year or 40 or more. Nothing like being told you shouldn’t be waking in the door at the neurologist’s office to give you a new perspective. Also nothing like joining the support group and realizing 80% of the people posting are paraplegic or quadriplegic. Some doing great, others very angry or sad and stuck there in their heads. I can’t blame them or judge in any way.

As the friend I’ve met who has had this without paralysis for 11 years said, “Welcome to the new you. If you dwell on what the old you could do, you’ll be sad. Focus on today and this silly disorder will be different tomorrow. Symptoms constantly change and some days are great, some days suck. And you’ve seen the thirds rule already. You’ll know which third you’re in in a couple of years.”
 
By the way, the Mrs has been on an organizing kick recently and went after my home office. She dug out all my Texaco airplanes and training certificates and my Leadville certificate and such and did this.

The layout on the wall is goofy because she also moved the furniture. She’s in a mood lately. Ha. So the stuff went where the nails were before but I’ll get around to prettying up the wall layout.

Can’t decide if it’s a happy thing or a sad thing surrounded by my airplane stuff when working. But I think I’ll go with happy for now. I like it.

The shadow box is was a day I got to take all of one of my oldest friend’s kids up on the same day. He’s Private rated but hasn’t flown in decades and trusted me with his kiddos. And they had such a good time they made me that photo box.

There’s probably a ton more aviation junk around here that could be added to the new aviation shrine but it’s nice the way it is for now. :)

390e7ec1ead561cbdc91b2e80deef2a8.jpg
 
@denverpilot

I like the office. On another thread, dealing with heat there is a discussion on using "ice vests" to stay cool. You mentioned earlier in the thread that heat causes problems. So I thought this sounded cool, so I found one: https://www.amazon.com/Glacier-Tek-...ice+vest&qid=1565149437&s=gateway&sr=8-6&th=1
Where in the QA/Review section there is a couple of MS users who comment on using this model. And it works great, so I called my sister in law, she has MS. She has been using this exact vest for a couple years when she goes running.

I will order one soon, before my wife drags me somewhere hot again.

Tim
 
uh, Nate? Second to the last time my wife went into "nesting mode" was about a year before our youngest son was born and the last time was about 2 months before he was born. ???? :D

BTW - office layout looks great! I'm out of wall space in mine and have an elk shoulder mount due to arrive sometime in the next few weeks from my taxidermist. Not sure where he's going to hang out yet.
 
I like the office. Its cool to see the place where all the long POA posts come from. LOL

Keep the stuff on the walls to keep the pleasant thoughts coming. You will fly again!
 
Nate, glad to hear you're getting the recommended treatment and are still keeping a positive attitude. Best of luck to you, and thanks for keeping us posted.
 
Glad to hear you're being treated. FYI, my wife moved from Gabapentin to Lyrica a couple of years ago. She was having bad side effects. The Lyrica has been a blessing.

Better yet, Lyrica has FINALLY gone generic. Instead of paying about $200 copay, the last refill only cost us $7.50!! I nearly passed out.

You're still in our prayers.
 
Nate, I've been off this board for a few years, recently got back, only to see this thread. I've really appreciated your comments, perspective and humor over the years. So sorry this has happened.

Regarding "don't put it off," my younger brother was working long hours at a sedentary job to "get his finances ready for retirement." He suffered congestive heart failure in March, and never regained consciousness after bypass surgery. That really started me reconsidering my priorities. I'd planned to work till 70 if I could, to be more prepared financially. I was wondering if I could find a way to do it sooner.

Then, the day I came back to work after Memorial Day weekend, I had my own heart attack, and quad bypass a couple days later. I decided it would be really dumb to make the universe give me any more taps on the shoulder. I was able to return to work July 15th, which was helpful to me psychologically, but I'm now set to retire this Friday, ready or not. I'll just have to figure it out as I go, financially. I'm in a cardiac rehab program, and have set a goal to be ready by next spring for a treadmill stress test the FAA will demand to get my third-class renewed. But if that doesn't work out, I'm confident I can find a way to contribute to the world. And I'll be grateful I had the chance to fly.

There will be things you can do with your qualifications and life experience, even if it's not the things you thought you'd be doing. I pray you'll find them, and find joy in them.

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

FedEx. Just don't skimp on the holes in the crate.
 
Wow @PW_Plack. So sorry about your brother. And glad you got a tap instead of the Big One.

Enjoy retirement. Worrying about the money won’t add any days, and probably knocks off a few! :)

Yeah for me, it’s maybe a bum draw of a hand, but it’s been an interesting detour to see how an awful lot of folks suffer a lot more than I do with this stuff. And do it with grace.

Spent today doing the infusion thing and the couple sitting next to me, he wasn’t 40 yet probably and she a little younger and MS hit him hard. His brain issues have stuck his memories or shall I say story jumping off points in the 80s and early 90s. As far as I could tell he was paraplegic in legs or very poor kinulkty in them. She had come along to help him and also translate his shortened sentences that often started with a late 80s reference to something to get to the present.

Just super sweet kids. Still happy. Still quite in love. She joked about the problems and talked about meeting him and dating and marrying and then their lives changing all with a chuckle and a smile.

But the absolute most fun for me was that he’ll, I know 80s references! And... he and I were both Colorado natives whereas she wasn’t nor is our infusion nurse. NOW we can have some fun. I start rattling off old places and he lights up. He starts talking about them as well as 80s and 90s pop culture and musicians and such and we are off on a roll.

The nurse and his wife are just looking at us two idiots, him speaking in half sentences and me finishing them with what I guess he’s referring to and he’s laughing his butt off. Now this guy is like 6’ 5” before the wheelchair and he’s not exactly quiet. Nor am I as people who’ve met me know. And we’re both belly laughing at old references.

We did finally land on Casa Bonita references after he joked that he really wanted a sopapilla out of the blue. I KNEW he was going there. And NOW the whole room is laughing at the horrible memories of Casa Bonita food, and cliff diving, and Black Bart’s cave.

Eventually lunch arrived and we ate that and I got to see the interaction with these two youngsters still totally in love but one failing in
a terrible way. She had brought snacks and earlier she had complained he only wanted the cookies. I helped him out with “I’d want to eat the cookies first too!” That was the original icebreaker and he started laughing hard.

When she complained he should have some grapes I was like, “You better do it man. She’s trying to keep you around a while!” Which is a whole different kind of humor when you’re fighting MS like that. They both laughed pretty hard at that one, and it got a good snort out of our infusion nurse too. Ha.

Truly... I hate seeing younger folks more afflicted by this stupid disorder than I am. And I’m meeting a lot of them. So resilient and full of life still. They’re inspiring. And if I could make them laugh for an hour or so during a boring ass IV infusion, cool.

So yeah. It sucks. There’s no getting around that. But as far as patients of this garbage go, I’ve gotten off pretty easy so far. And seen some pretty damn impressive people dealing with worse as an example if mine ever takes such a turn.

I suspect this couple spends a lot of time at home, but they did talk about getting out to a dinner out together last weekend. But physical disabilities tend to isolate folks and I was probably the only fool who’d sit around with this guy and figure out from his 80s pop culture and Denver references of things long gone, where he was going with a modern reference.

You see he could start back then and then work his way forward to modern memories but everything had to first relate to the 80s and early 90s. What a strange cooong mechanism his brain built right through 1987. Hahaha. But it was actually fun to talk to him if you knew the references.

He had a blast. I’m sure he rarely runs into someone willing to figure out the links and when you’d say “Do you mean you’re saying you like [so and so, modern singer] he would nod and laugh and look quite pleased someone else could follow that trial forward.

Same with talking about modern Denver, it had to start with some place that existed back then.

So... if I could make this guy and his wife laugh for a while, while we’re sitting there waiting on IV pumps to do their thing... why not. More interesting than falling asleep in the chair.

Which I did have to beg off and do for about 30 minutes after lunch. Ha.

I don’t know if I made that guy’s day, week, or month memorable or how often he laughs that hard, but it sure made him happier today, and seeing him laugh like that made his young wife giggle like a school girl too. A couple of times she scolded him and indirectly me to be quieter. Haha. But she didn’t really mean it. And our nurse wasn’t hollering at us, so I knew we weren’t totally out of control yet. She was over there smirking and doing a mountain of electronic paperwork.

So... whatever. Heath first, flying second. And if I can brighten a young couple’s day while sitting in a cheap recliner being stuffed full of drugs, fine by me. Life ain’t about just one activity or hobby. Those kids have suffered more than I have by far. Makes me sad to know it, and much less sad to see they’re making the absolute best of it.

An interesting side effect of his 80s thing. It meant he liked watching movies from that era. Including quoting them and we did that for a while, too.

But the most loving thing I saw all day was that he had an enormous sized Android phone with a huge screen, and she’d loaded a huge number of movies from then into it. When we weren’t all taking (like during my little nap) she would ask him what movie and he’d tell her and she’d queue it up and he would chuckle to himself watching it with his giant phone and Bluetooth headphones. So sweet of her to have that all set up for him. Of course she also helped him with menial stuff like a crooked pillow on his wheel chair headrest, and a stuck foot holder. The usual stuff you see with stupid wheel chairs. But the movies. Just listening to her rattle off options I was flooded with the realization that she wasn’t looking at the device. She ripped and resized and copied all of those into his phone for him. Unbelievably sweet.

Quite the infusion visit today. Hopefully I run into those kids again.
 
If nothing else Nate you gave the young wife a break. From entertaining him to listening. The guy had a whole new audience. You probably made his well. I hope you're able to schedule to do it again. Maybe next time the wife will go and get her nails done knowing her husband is being cared.
 
Autoimmune diseases are among the most mysterious, I've yet to hear much of anything why they hit some folks and not others. There clearly are genetic components, It can be utterly devastating when the immune system decides to attack the body rather than invading microorganisms, which is what it's supposed to do.
 
Regarding "don't put it off," my younger brother was working long hours at a sedentary job to "get his finances ready for retirement." He suffered congestive heart failure in March, and never regained consciousness after bypass surgery. That really started me reconsidering my priorities. I'd planned to work till 70 if I could, to be more prepared financially. I was wondering if I could find a way to do it sooner.

Then, the day I came back to work after Memorial Day weekend, I had my own heart attack, and quad bypass a couple days later. I decided it would be really dumb to make the universe give me any more taps on the shoulder. I was able to return to work July 15th, which was helpful to me psychologically, but I'm now set to retire this Friday, ready or not. I'll just have to figure it out as I go, financially. I'm in a cardiac rehab program, and have set a goal to be ready by next spring for a treadmill stress test the FAA will demand to get my third-class renewed. But if that doesn't work out, I'm confident I can find a way to contribute to the world. And I'll be grateful I had the chance to fly.

Sorry for all the science content, but I just read this the other day. Non human primates like chimps and gorillas don't get blocked arteries or heart attacks, despite a sedentary lifestyle. The don't even get them when you give them a bad diet. Neither do rodents. Turns out we humans lost a gene about 2 million years ago that prevents clogged arteries and heart attacks. Other primates have it, as do lots of other mammals. Delete this gene, CMAH, in mice and they get clogged arteries.
 
Wow @PW_Plack.Spent today doing the infusion thing and the couple sitting next to me, he wasn’t 40 yet probably and she a little younger and MS hit him hard.

Nate, this post (shortened dramatically above) says so much about who you are in a positive way.

Thank you for bringing some joy into the lives of those two kids! And keep it up!

-Skip
 
Not really related directly to my medical junk, but the vet called and said one dog had a bad “pre-kidney failure” test and she needed the dog back to do more tests, the other dog had low red and white blood cell counts for an unknown reason to be monitored for six months....

And Karen finally went to the ENT and confirmed her suspicions that she likely has Meniere’s disease. She gets to ride the MRI tube just to make sure there is no (almost always benign) tumor in there messing with her ear.

Doc offered to start fitting her for a hearing aid. And now I know why I had to yell so loud across the house — or not. She could just be ignoring me. Hahaha.

Quite the week. Was utterly wiped out by the final round of the “initial” infusion yesterday. Thought I would head to the office. Brain said “all good”, body said “nah, sit down... you aren’t going anywhere...”

At least that left me sitting at home working when the vet called to bring the dog back and that was evening and energy level had started to come back. So off we went.

Office today. Wasn’t bad. Had to climb on furniture to fix the stupid call center TVs that display crap for them, after a power outage last night. That was entertaining with clumsy legs.

* Also fixed the stupid BIOS config and TV config so those come on after power loss, and turned on wake-on-LAN so I can stop climbing on furniture. LOL. Ugh.

Off to get the girl pup from the vet and see what these other tests showed. Poor pup.

Have a co-worker who raced out of here after a call from his chronically ill SO today too. Damn glad I made it in to cover the afternoon for him.

Did I mention Karen had an older friend pass away this morning and another go into hospice?

This everybody in the house getting old crap isn’t for wimps. It’s also for the birds right now. Sheesh. :)
 
Hi Nate.
Sorry about what you're going through. My prayers are for you and Karen and everything else that is swirling up on you right now. Thanks for your humor and insights. I'll pray that you'll enjoy a nice long cessation of further complications.
Best wishes,

Justin
 
Not really related directly to my medical junk, but the vet called and said one dog had a bad “pre-kidney failure” test and she needed the dog back to do more tests, the other dog had low red and white blood cell counts for an unknown reason to be monitored for six months....

Could just be breed dependent kidney dysplasia, my little Shi Tzu dog Moogie had that. A low protein diet fixed her right up. I miss my Moogie.

And Karen finally went to the ENT and confirmed her suspicions that she likely has Meniere’s disease. She gets to ride the MRI tube just to make sure there is no (almost always benign) tumor in there messing with her ear.

I wouldn't be at all surprised if this was an effect of improper development due to the Turners. Damn mutants.
 
I have a few "older" friends in their late 70s who are not doing well. Plus all my parents family friends who I have known since I was a kid.
The conclusion I have come too is getting old sucks. However, my 102 old grandmother says, "getting old sucks, but still better than dying".
 
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