"Because I don't either. You're the only person I've ever seen who washes clothes the way I do. "
DENT: Which is. . . ?
b1: I don't know. Probably multiple loads. Extra rinses. Unusual drying.
I think my mom did. 😆
I wasn't expecting you to go all Sherlock Holmes, or I wouldn't have told you the story in the first place. Here's an idea: let's ignore the general story and drill on insignificant details.
DENT: We have the CDC which should have been much more proactive on this. Bill Gates has probably done more than the CDC.
b1: Yes. He'll cure malaria faster than the CDC as well.
If you have Nf, you should watch, "Inside Bill's Brain," it's simply excellent.
Really, it's BG on 4 topics: malaria, nuke power and two more I forget...
DENT: He gave a TED talk in 2014 about how we are not ready for a pandemic that was prescient.
We do have Netflix. I will check it out.
Turns out he only person who knows what's going on. Everyone else is distracted, I guess.
(Which, I believe, means 'pregnant' in French. )
[That was a l-o-n-g running joke in jr. High when everyone was taking foreign language.]
1. Hydroxychloroquine and Zithromax May have some benefit, especially if taken early.
2. The symptoms can be mild at first and then turn bad bad suddenly.
3. Cough and fever are common, but some people start off with GI symptoms of diarrhea and maybe nausea.
Hydroxychloroquine is an antimalarial drug that we take every year before going to Haiti. It is also used for autoimmune conditions Like rheumatoid arthritis. Very safe overall.
b1: Yeah. I had a GF lose her mind on mefloquine in Bali.
Far enough gone, she had to quit it.
DENT: Mefloquine can do that. Not so much with chloroquine. Perhaps some vivid dreams or suicidal ideation. That's all.
b1: My high school pals would've considered those pluses.
DENT: So, how are you feeling these days?
b1: I'm okay. The antibiotic and anti cough gave me almost immediate relief... I'm not completely better.
The accomplice is recovering from her total hip and is doing MUCH better than last time...
Thre surgery came at the PERFECT sociological time.
Mom's doing just fine.
I call her everyday (instead of visiting last week...I was early on the Cancel Travel train).
DENT: Who's this?
b1: My cohabitant.
Her mom died right before all this madness, which was also perfect timing.
DENT: I am glad to hear she is doing well. Hip operations are usually great.
I don't remember hearing about the cough. Pneumonia?
b1: It's the one you beat on me (unprompted and unrequested) about the P.A. diagnosing me by phone.
DENT: Oh, THAT.
b1: Yes, fuck you very much.
Q: what's worse than having MS?
A: having MS and a bad cough.
DENT: Sorry. Couldn't hear you. I was updating your address.
b1: Q: what's worse than having MS and a bad cough?
A: having MS a bad cough and the person who used to sleep IN YOUR BED (for FREE) telling you that you aren't solving the problem correctly... from 750 miles away.
DENT: You might have touched a nerve. Forgive me.
b1: Har.
Maybe you should see an ENT.
IF YOU CAN FIND ONE THAT CAN CLIMB THAT HIGH ON A THRONE TO SERVE YOU.
And to think all this started with "Mr. Blue Sky. "
My dad said it best, "that goddamn son of a bitchin' ELO."
The Skulker merely copied him.
DENT: Ah, The Skulker. There's a guy that fell off the earth.
I am glad it worked out. But, I still stand by what I said. Take <my comments> as my general opinion on the state of medicine these days, not on your case specifically.
<ed: just to be clear, he was talking to me, "specifically.">
b1: You may still turn out to be right. Drop a daisy on my casket and say, "I told you so."
Broadly speaking, I'm actually enjoying the state of the world right now... or more precisely I like the experience...
...I like days and periods of time that leave memories.
I like things not always being the same.
DENT: I know you are a night owl.
b1: It's nice to see the public concerned about health, instead of just me...
BUT this virus ultimately gets understood, maybe cured?
And my MS never does...
So the public attention wanders away.
Comparing it to the freak out everyone's having right now, I can tell you, for sure, that the average American couldn't deal with what I have.
I barely do.
DENT: Are your MS symptoms stable?
b1: ... but I'm SO much better than the average patient, it's not even worth talking about, except for the fact it's me.
DENT: What is your worst/most frustrating symptom?
<first time I've ever been asked that question... by anyone... I've been diagnosed for about 4 years. >
b1: Right now? Lack of balance.
DENT: Mostly with walking? Or just sitting.
b1: Walking.
I can sit and stand.
I cannot run.
i don't walk distance without a cane (for balance reasons only, so I don't fall).
I do well enough that I don't talk to my nuero anymore...
I talk to her P.A.
DENT: That's pretty rough since it was only, what, 5 years ago that you were in the best shape of your life?
b1: That's right. The decline from 5 years ago is significant.
From 3 years ago, not so much.
DENT: Do you think the meds you have been on have been helpful?
b1: Went in a couple weeks ago and he had me do a bunch of stuff...
Arms out, eyes closed, walk toe to heel, etc...
On and on.
And under his breath he said, "there's nothing wrong with you."...
"I HEARD THAT! I'M GOING TO SUE YOUR ASS, BECAUSE I HAVE IT ON VERY GOOD AUTHORITY THAT I HAVE MS. "
DENT: Hmmm. Because you were compensating so well?
b1: "If you do, you'll be the first person in this building to do so. There's 200 professionals in here. I'm the only one who's never faced a suit. "
DENT: Is this the neurologist from the Cleveland Clinic?
b1: It's the P.A. to the two (and only) MS specialists at the entirety of the CC.
Me: "That's impressive, why?"
Him: "I think it's because I write more than 20 pages on all my patients, everyday. People seem to respect extensive notes. "
DENT: He probably has a point about extensive notes.
Do you think the meds you have been helpful?
b1: They think they are. Having said that, there's no doubt they rough up my liver like a ball and pein hammer.
I think it's my diet, maybe that and los drugs.
DENT: Ugh. No free lunch.
<ed: you could say that. My prescription is currently US$200 a day, for life. (There is no cure.) I pay US$0.>
b1: I'm certain my good attitude helps me.
They have liver numbers they want to keep ne above...
I crossed em once.
They redefined.
I crossed em again.
They redefined AGAIN...
DENT: Well, you are the luckiest guy in the world.
<ed: that's true. Someone has to be. >
b1: Exactly.
I'll be all right.
"You cross 'em again, we're putting you on something else."
THAT I do not want. This one now is the equivalent of a college level drug. I've already gone through the lower stuff.
Everything else is grad school and various levels of terrifying.
The penultimate time I saw him, I was the last appointment of the day. He walked in and said, "oh thank God, it's you guys! This has been a hard day. "
They tell me at this point, I've been in tecfidera longer than anyone else in the world. Not everyone can tolerate it.
DENT: A lot of medicine is trial and error and soft science. We have general ideas about what the body can do, but every body is different.
I see he enjoys your visits.
I'll have to look that <drug> up.
b1: It's rare. Fewer than 2000 are on it. I always gave to help the pharmacologist look it up for possible conflicting meds.
It's super common for me to be in the Clinic and have laughter echoing though the building as a result...
I used to apologize to the front desk people...
DENT: The laughter part doesn't surprise me a bit. The apology part does.
b1: Three times ago the receptionist said, "Baby, don't you apologize. We need a lot more of that here. "
I said, "don't call me 'baby' with my girlfriend standing right here. My phone number's on my records. Just don't call when she's home..."
AND THE PATIENTS WAITING IN THE LOBBY LAUGHED.
My going to the Clinic is the most stabilizing, secure, thing I have in my life.
They'll end up with at least a third of everything I'm worth/ own...
Sounds nice, but It won't be much.
DENT: I thought you were maybe on something that started with a c.
I am sure they see a lot MS and have a good handle on it.
Mayo Clinic has always been good at hitting people up to get put in the will.
b1: I can see how they would be.
I asked my P.A. last time I was there, "just how rare a patient am i?"
"Oh god. 90% of the people we have are in a VERY bad mood...
... another 5% don't talk at all...
...Of the last 5, you're either the most enjoyable or next most. "
DENT: That's probably the best compliment you could get!
Neurologists are not psychiatrists. 😄
b1: "Hand me that knee hammer. I'll make it to number 1."
That's exactly the way I take it.
But seriously, it's just a devastating disease...
DENT: I can (or really can't) imagine.
b1: And EVERYONE I personally know (and there are several) has it worse.
By and large it's a women's disease. First guy I ever met with it was in a wheelchair...
DENT: I have seen quite few patients over the years with MS in a wheelchair.
b1: It was after an MS talk.
Him: "it's really nice meeting you."
Me: "nice meeting you too."
Him: "I hope we meet again!"
Me "We will but you shouldn't wish I'll on yourself. How's your memory?"
DENT: I'll bet you were good for each other at moment for different reasons.
b1: him "Oh, it comes and goes. "
me "Good. Next time we meet I'll say you owe me five bucks. You won't remember and I need the money. "
His caregiver laughed until she cried.
DENT: He has a sense of humor.
Now you know who is in first place.
b1: Yeah. I suspect it's easier to tell that joke if you have MS as well.
Coincidentally, THAT was the day I found out about the CC.
DENT: There is your competition. Take him out.
CC?
b1: Cleveland Clinic.
DENT: Ah. Right.
b1: Man, you're bad at abbreviations that aren't 'scrips.
DENT: I am not a millennial and never was one.