Maybe it’s permanent. Grounding that is.

Repost from FB for friends here.

——

Sometimes being “ill” is just boredom.

Lumbar puncture to get cerebrospinal fluid for tests on Friday. Doc says chill at home on your back as much as possible. You still spring a CSF leak and put up with it for a few days doing the conservative treatment. Which is?

Lie on your back.

Eventually an ER visit because besides the expected headache and neck ache, you’re noticing hearing loss on one side (okay now)...

Blood patch at ER... instructions... take it easy and lie on your back for two to four days, no heavy lifting or activities.

Which spells one thing. BORED. Really really bored. The first couple days you catch up on sleep. Forced bed rest is an excellent napping opportunity.

Well other than the recommended drug for the CSF headache? Caffeine. Lots of caffeine.

So. Day 5 of lying around. Depending on level of paranoia about the leak healing up, 1 to 3 days from doing anything useful.

Interestingly they prescribe an interesting mix of drugs for this. Acetaminophen and caffeine - that makes sense. But they want you mellow and not hyped up by the caffeine so they add... a barbiturate. Hahaha.

They basically hype you on caffeine and then make you not care. That’s quite a mix. You’re all ready to go go go but... nah... it’ll wait...
 
Nate: For a while, they treated my wife’s migraines with a combination of Cafergot, vivaran and acetemetiphen/caffeine. About 5-600 mg’s a day caffeine in the Cafergot, 65 mg per acetemetiphen tablet and 65 mg per vivaran. She was getting a gram or so of caffeine a day and was sleeping about 18 hours a day....:confused:
 
Craig said:
Nate: For a while, they treated my wife’s migraines with a combination of Cafergot, vivaran and acetemetiphen/caffeine. About 5-600 mg’s a day caffeine in the Cafergot, 65 mg per acetemetiphen tablet and 65 mg per vivaran. She was getting a gram or so of caffeine a day and was sleeping about 18 hours a day....:confused:
Click to expand...

LOL I feel her “pain”. So weird being all hyped up and then falling asleep anyway. Did that last evening and now awake at 5AM.

Well, the big dog poking me that he wanted to go outside was what woke me up, but I’m sure the crazy capsule of pharma weirdness has worn off by now. *

This concoction is less caffeine than hers. About 50mg but they tell you to drink caffeinated drinks and such.



* He really does poke me. And at 95 lbs and very tall he can reach anyone lying in a bed or on a couch. Just slams his nose into you when he wants something and you’re asleep. Haha.
 
denverpilot said:
Did that last evening and now awake at 5AM.

Well, the big dog poking me that he wanted to go outside was what woke me up, but I’m sure the crazy capsule of pharma weirdness has worn off by now. *

* He really does poke me. And at 95 lbs and very tall he can reach anyone lying in a bed or on a couch. Just slams his nose into you when he wants something and you’re asleep. Haha.
Click to expand...

So did you poke Karen and wake her up to let the dog outside? Does the dog keep poking until you get up or after one poke, does he lay down next to the bed with a huff if he doesn't get his way?
 
Justin M said:
So did you poke Karen and wake her up to let the dog outside? Does the dog keep poking until you get up or after one poke, does he lay down next to the bed with a huff if he doesn't get his way?
Click to expand...

I was asleep on the couch nearest the door he goes out from. And no he doesn’t quit. LOL.
 
denverpilot said:
LOL I feel her “pain”. So weird being all hyped up and then falling asleep anyway. Did that last evening and now awake at 5AM.

Well, the big dog poking me that he wanted to go outside was what woke me up, but I’m sure the crazy capsule of pharma weirdness has worn off by now. *

This concoction is less caffeine than hers. About 50mg but they tell you to drink caffeinated drinks and such.



* He really does poke me. And at 95 lbs and very tall he can reach anyone lying in a bed or on a couch. Just slams his nose into you when he wants something and you’re asleep. Haha.
Click to expand...


I have a Doberman pup that does the same thing. It’s like having a 90lb toddler, and he’s still growing.
 
Half Fast said:
I have a Doberman pup that does the same thing. It’s like having a 90lb toddler, and he’s still growing.
Click to expand...

Yeah. He acts like he’s about three. Ha.

057b5559f6178867ec8b4a519550309f.jpg


That’s him on the king sized bed. Ha.
 
denverpilot said:
The band Red Wanting Blue has a great song called “Finger in the Air”.

You won’t have to guess which finger with this photo. LOL. Not my photo, I’m back and to the right of the photographer. With the appropriate appendage held aloft... :)

83e16ae4ad01573614b18ef43906670b.jpg
Click to expand...
Did you say hi to Will (the photographer) for me?
 
So updates...

Lying on my back for so many days was really screwing with the right leg. It finally dawned on me that the oral steroids given for walking issues on the trip were just as valid to take after the trip and this other stupidity, so I started them last night.

Immediate help with the right leg and foot.

I’ll see the neuro Wednesday and if she doesn’t like it, too bad. Her assistant was told my neuro symptoms were changing again twice (something the neuro wanted to be notified of) and didn’t pass it along, so we are going to have a polite chat about that also.

“You want to know when things change, which assistant should I pass that through? Because the new one, nice as she is, didn’t tell you after two phone calls. So I started the steroids or I wouldn’t have been able to walk in here.”

It’s not malicious, just too many layers.

Reaching the lumbar puncture docs in the days I was leaking was also a total pain in the ass.

And of course three hour long holds to reach the specialty pharmacy returning THEIR call I had already taken and they didn’t write down that I consented to ship the infusion drug the first time...

The administrivia is by far the worst part. I swear the stupid CSF leak headache was easier than the phone call headaches.
 
It has never made sense to me why healthcare is so much of a headache.
Even in Europe, Britian, and Canada where I have had to make use of medical services it was always a pain in the but.

Tim
 
That sounded overly crabby. Ha. Guess I’ll finish the day’s updates.

On the good news front, the better leg and foot meant I knew I needed to get some damn exercise after all of this plus the snow days, and using my actual stairs as a stairmaster (wait, what? You can do that without a machine?! Heh...) wasn’t cutting it.

So we purposefully made plans to run some errands and go to the mall for no other reason than to walk somewhere large and indoors away from home and the ice and snow.

I bought new underwear and a belt. At Target. Exciting isn’t it? LOL. New underwear to replace old pairs wearing out, belt to keep from showing off the fancy new underwear. Ironic. LOL.

Had some chicken stir fry with ramen noodles. Chef went crazy and made such a large amount I brought home enough leftovers for two more meals.

Even walked into the Microsoft store in the mall to show Karen the cool little tiny Surface Go. If her hand me down MacBook keels over, it’s the perfect little machine for her. She does stuff that requires real browsers so no iOS device/tablet will ever cut it. And a MacBook Air or whatever is total overkill and expensive for what it is.

I need to look and see if any of the surface lineup has built in LTE. That’d be nice for travel.

I started joking with Karen that the suburban white woman starter pack now comes with only two outfits for Saturday shopping. Yoga pants or skinny jeans if they’re attempting to impress someone.

She was dying laughing as we kept count of the suburban white women NOT in one of those types of pants and how few it actually was. LOL.

Also came home to find Rick Beato had added Stevie Wonder’s Superstition to his breakdown by track videos and squeeeeeed in delight. So much tasty musical goodness in every single track!!

 
Interesting update.

Most of the lab results are in from the CSF and serum tests.

The only positive result was the marker for inflammation.

None of the (somewhat sketchy but used anyway) markers seen for MS are present.

The oligclonal band test isn’t back yet.

Doesn’t mean it isn’t MS but it’s sure going to frustrate my neurologist.

It’s. Info. Not sure it was worth the week and a half of lying flat on my back, but whatever...

Mr. Ideopathic. :)
 
"It's information."
"What does it mean?"
"No idea, but we have it"
"What do we need to find out what it means?"
"More information"
"Isn't that what we just did?"
"Yes"
 
Nothing exciting to report but did get new basic blood test numbers back that they have to take every six months for the infusions.

I think they screwed up a bit. She took them at the end of the infusion after steroids and such.

My eyeballs bugged out when I saw the glucose number (198) until my wonderful nurse wife reminded me that it was taken at the end of the infusion with steroids and they fed me spaghetti while I was sitting in the barcolounger during the infusion.

For a minute there I thought all this “fun” had killed my kidneys. LOL.

Various other numbers were out of whack also.

Funny how that works when they just killed off half of your immune system before the blood draw. Haha.

Still... I’ll have the neurologist and GP go pull the test results since they were “officially” taken by the infusion doc’s orders and his nurse, so they won’t know there’s new but completely whacked numbers to look at.

Lord knows, if she was supposed to do that before the infusion, they’ll probably want to stick me again... getting to where they stick me so much I don’t even care anymore. Haha.

Waiting around for neuro number three visit in a couple more weeks... so they can prod me some more.

Technically neuro four since the lumbar puncture guy also gave an unofficial opinion after looking at my latest MRI... “Don’t know what that is, but I’ve seen a lot of MS MRIs, and it doesn’t look like MS to me...”

I’m just one big electrical system fault. Ha.

Funny: The next neuro specializes in MS and child neurology. They’ve figured me out! LOL. And not the MS part! :) It’s just a random initial assignment with the Univ. I suspect I’ll get bounced around over there.

Symptoms stabilized after the infusion around the normal/sucky levels of stuff seen prior to the vacation trip. So I guess that’s better than them being worse. Nice to be back to job/work stuff from the house and sometimes at the office.

Found a couple work projects that needed doing. One big telephony thing that’ll take a couple of us to do, and a security thing. That’s enough to keep me busy when I’m not at PT or yet another doc appointment.

We needed bathroom remodeling done anyway so I’ve pinged the neighbor who does those to start thinking about doing two of them and adding some safety/accessibility grab bars and crap. He’s going to stop by and do some estimates some day when the weather sucks since he lives in the neighborhood.

If things don’t change, it’ll be helpful on bad days. If things get worse, we’ll need it done anyway... and remodeled bathrooms are never a bad thing anyway. The master bath isn’t truly safe for me anymore, or at least makes me nervous... so that one goes first while I keep using the safer one, and then I can use that one while the other is torn up.
 
Nate: Since you are redoing those rooms, take the time to make them ADA compliant as much as possible. Lots of little things that can best be done now, then making the bolt on transition conversion as needed.

There should be some local resources available to help plan the conversion based on potential future needs.
 
Bathroom and kitchen projects. Oh my.
Ours started with a broken hose on the kitchen faucet. The previous owner had installed a European faucet, which had a non-replaceable sprayer hose. So the way it was installed meant pulling the sink. The sink was supposed to be white porcelain but was probably 30 years old and looked bad, was scratched to heck and back, and due to water stains was more brown than white. So I am game for replacing the faucet and sink on my own. This all started because the faucet in the utility room started to leak, and I replaced that, including remove/reinstall the sink to fix a counter leak in there.
At the same time, my wife also did not like the sink/faucet in the master bath. And the faucet was leaking, the faucet was so rusted into place, that I bent my basin wrench trying to take it out. Then my step sons cracked the sink the basement bathroom...

So what started as with a broken sprayer in the kitchen; has now become a project for the GC (and almost finished, if my wife stops adding more projects). Here is the current list:
1. Replace counter top in kitchen, including all new backsplash.
2. Convert master bath from single sink to dual sinks with new cabinets, using quartz counter top.
3. Now, the medicine cabinet did not work with the dual sink, so lets replace the single one with two very large ones over each sink.
4. Due to cracked sink, and minor water damage; remove cabinet and replace in basement bathroom with nice sink, counter and new medicine cabinet.
5. Cannot have upstairs bathroom looking so old and decrepit; now it gets a new cabinet, sink, faucet and medicine cabinet.

Everything but paint is done. Except now my wife has decided that the rest of the master bath looks crappy in comparison. So now, starting on Monday, they are going to tear apart the other half of the bathroom, replacing the tile, and everything around the tub...

Never buy an old house :)

Tim
 
@denverpilot when you're redoing the bathrooms, be aware that grab bars don't have to look like institutional stainless steel bars. Delta (and probably others) have a whole line of towel bars, soap dishes, toilet paper holders and showers (the adjustable height ones) that are rated as grab bars. So if you don't want your bathroom to look like a nursing home, you don't have to have it look like one.

We replaced a lot of the fixtures in our MIL suite with those and it looks good, but is functional. At this point, my mom doesn't need a lot of support but is unsteady some times. You may eventually need them in locations where a towel bar, etc. would look odd because of physics and arm heights but it helps...
 
I definitely agree with the idea of adding in some of the safety measures, but trying to make them look as attractive as is feasible and not just institutional. Aside from making things nicer for you it'll also make resale easier (not saying moving is imminent or even going to happen anytime particularly soon, but a worthwhile consideration), since people will look at attractive grab bars as "We can leave that alone" as opposed to "Have to rip that out" (assuming the buyers are people who don't think they'll need them in the near future). My mom added some grab bars in her apartments but went for the industrial kind. Really takes away from what are otherwise attractive bathrooms.
 
Going along with others, the grab bars my parents installed for my grandmother were very slick. The contractor installed them in a slight recess mount; about a half in depth. After my grandmother passed away, they removed the bars and put drywall/tiles over the mounting locations. It worked really well; and was a quick "fix".

Tim
 
Something to consider that most people don't realize...ADA equipped homes generally don't become visible on the market because word of mouth in the handicap community. I used to work for a company that designed a product and brought it to market for quads. We knew about ADA homes being put up for dale and sold within days and never hitting the open market due to the capabilities of them.
 
Craig said:
Something to consider that most people don't realize...ADA equipped homes generally don't become visible on the market because word of mouth in the handicap community. I used to work for a company that designed a product and brought it to market for quads. We knew about ADA homes being put up for dale and sold within days and never hitting the open market due to the capabilities of them.
Click to expand...

They are rare enough that wouldn't surprise me.
 
Craig said:
Something to consider that most people don't realize...ADA equipped homes generally don't become visible on the market because word of mouth in the handicap community. I used to work for a company that designed a product and brought it to market for quads. We knew about ADA homes being put up for dale and sold within days and never hitting the open market due to the capabilities of them.
Click to expand...

I never would've thought of that, but that makes sense.
 
Oh, @denverpilot GET OUT OF MY HEAD!

Last night I had a dream that we had grab bars in our bathroom. The ugly industrial ones, and they were in locations that didn't make sense and wouldn't work. Thanks. :)
 
Ted DuPuis said:
Oh, @denverpilot GET OUT OF MY HEAD!

Last night I had a dream that we had grab bars in our bathroom. The ugly industrial ones, and they were in locations that didn't make sense and wouldn't work. Thanks. :)
Click to expand...

LOL!!

So I shouldn’t tell you that YMCA can be sung DHCP?

...

Admin, now there's no need to guess
I said, Admin, a new IP address
I said, Admin, for your brand new PC
There's no need to cause a conflict

Admin, there's a place you can go
I said, Admin, when you really don't know
Free addresses, only look and you'll find
In the TCP dialog

The one to set up is D.H.C.P.
The one to set up is D.H.C.P.
It says "Obtain an IP
Address automatic'ly
It will give you one that's free"
The one to set up is D.H.C.P.
The one to set up is D.H.C.P.
You can set up a lease
You can make it timeout
If you know just what you're about

Admin, Are you listening to me?
I said, Admin, but your DHCP
Needs a server, if you're using NT
It can be your main fileserver

Admin, please don't think you're a jerk
I said, Admin, just because it don't work
When you boot up, you can't see the network
(have you checked the network cable)

The one to set up is D.H.C.P.
The one to set up is D.H.C.P.

So right-click right on
The network neighbour icon
Check it out now before I'm gone

The one to set up is D.H.C.P.
The one to set up is D.H.C.P.

Now you don't have to choose
What IP address to use
You can lose all the network blues

Admin, I was once in your shoes
It said, this one is already in use
IP conflicts made the whole network crash
The whole setup was a mishmash

That's when someone came up to me
And said Admin there's a service you need
On your server: it's called D.H.C.P.
You can get it sorted neatly

The one to set up is D.H.C.P.
The one to set up is D.H.C.P.
You don't need a diskette
And your gateway is set
If you access the internet

D.H.C.P.
The one to set up is D.H.C.P.
The one to set up is D.H.C.P.

Admin, Admin, there's no need to feel down
Admin, Admin, don't throw it down on the ground
D.H.C.P.
Just set up the D.H.C.P.
Admin, Admin, I was once in your shoes
That IP address was already in use

...

Let me know if you dream of Village People and networking protocols! :)
 
Craig said:
Something to consider that most people don't realize...ADA equipped homes generally don't become visible on the market because word of mouth in the handicap community. I used to work for a company that designed a product and brought it to market for quads. We knew about ADA homes being put up for dale and sold within days and never hitting the open market due to the capabilities of them.
Click to expand...

Yeah I’m realizing there’s quite a sub-culture amongst disabled folk of all sorts.

But this house won’t ever be fully ADA compliant — four acres of land, 900’ dirt driveway and parking (if not in the garage), split levels from a mud room main entrance, narrow upstairs hallways, various other issues.

The mods are assuming I don’t get worse for quite some time. Basically until the doggies pass away. Then we are probably back into a city... yuck.

Whether or not that city is Denver or somewhere that never gets snow... is currently under discussion. :)
 
Nate: Bathrooms are the biggest items to deal with, along with being the most expensive. Kitchens come next, but can be done at considerable lower cost. If you do the bathrooms, you are way ahead. Just remember, the entire house doesn’t have to be ADA compliant for it to go quickly. I have an acquaintance that was about to convert his home and 50 or so acres when his wife passed and no longer needed to.
 
Well couple of interesting updates.

University of CO called and shoved my initial “second opinion” appointment back two weeks. That kinda cheesed me off. But ok.

I decided a couple weeks ago that where this is all headed was eventually a trip to the two specialty places for this junk... John’s Hopkins, or Mayo.

I decided to call Mayo today to start the process of asking general questions and seeing how far out appointments run, etc.

45 minutes later the neurology assistant says, “Can you be here next Tuesday?”

Actually yes. For an opportunity to have the Mayo look this mess over — why yes. Yes I can.

Flight and hotel booked. Karen says she will stay and hold down the fort and watch doggies.

I’d say if nothing else, if I walk out of Mayo without a diagnosis I’ll feel a lot better about it than CU. No offense to UCHealth but... one of two top centers for what I have... or them? Sorry.

Haven’t cancelled the appointment with them yet, but will know if I can in a week or so.

Minnesota in winter on a cane. Yay! LOL. At least the long term forecast looks decent for the time of year. And I’ll probably be riding more imaging tubes anyway, indoors. :)
 
denverpilot said:
Well couple of interesting updates.

University of CO called and shoved my initial “second opinion” appointment back two weeks. That kinda cheesed me off. But ok.

I decided a couple weeks ago that where this is all headed was eventually a trip to the two specialty places for this junk... John’s Hopkins, or Mayo.

I decided to call Mayo today to start the process of asking general questions and seeing how far out appointments run, etc.

45 minutes later the neurology assistant says, “Can you be here next Tuesday?”

Actually yes. For an opportunity to have the Mayo look this mess over — why yes. Yes I can.

Flight and hotel booked. Karen says she will stay and hold down the fort and watch doggies.

I’d say if nothing else, if I walk out of Mayo without a diagnosis I’ll feel a lot better about it than CU. No offense to UCHealth but... one of two top centers for what I have... or them? Sorry.

Haven’t cancelled the appointment with them yet, but will know if I can in a week or so.

Minnesota in winter on a cane. Yay! LOL. At least the long term forecast looks decent for the time of year. And I’ll probably be riding more imaging tubes anyway, indoors. :)
Click to expand...
Why not Mayo in Phoenix?
 
murphey said:
Why not Mayo in Phoenix?
Click to expand...

There’s only two docs in Scottsdale that see patients with my condition. It was basically numbers. Better chance of an appointment in MN. Much larger neuro team.

Interestingly, not that many docs on the overall neuro team see TM patients. It’s a specialty inside one of the hardest specialties.
 
Glad you are able to get in with some of the world experts. This is what I always advise people with serious diagnostic conundrums. If they can afford it, find the world experts for what it appears to be and go to them. Don't spend time messing around.
 
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