K 

So lately I’ve been thinking about honest things I say about Japan that are unique to Japan. And lies I say.

C 

You tell lies.

K 

Yeah, things that like I call it, blame it on Japan. And we’ve talked about it before how I use Japan as like sort of a get out of whatever I don’t want to do.

C 

Oh, yeah, sure.

K 

And people just let me. But now having a business where I’m doing business with people who are not in Japan, there are some like real things that sound sort of

C 

Sound suspicious, but are actually true.

K 

Yeah. So like in Japan, will get in major trouble if our invoices aren’t paid. Like if we’re not paying our vendors. They question whether or not we’re money laundering, yes. Which is so weird.

C 

And they say it just that way.

K 

Yeah. And they say like, well, this money came in, and no money has gone out. Are you money laundering? And they’ll say it directly. Are you money laundering? And I’m like, No, I’m not money laundering. You have all of these invoices that are outstanding. Because not, we have to like, sometimes we have to chase people down to pay them.

C 

Yes.

K 

And it gets really dire, especially with it coming to the end of the year like December’s coming. And we have to do, like 1099s for people in the United States, have to do other tax forms for people in the UK, other tax forms for people in Germany, the Philippines, and Africa. So we literally have writers from around the world.

C 

And I’ve talked before about Japan just regards me as an unemployed guy who sometimes gets money for no apparent reason, from the same company every two weeks, regularly.

K 

Yeah, and Japan really doesn’t understand… starting a business, starting as a solo business, that’s not immediately profitable. Because usually, when you start, what’s the equivalent of a American limited liability corporation. In Japan, when you do that, it’s usually propped up by somebody.

C 

Right.

K 

And usually have something that you know, you’re guaranteed to sell. And so I make no sense to them. Cinnabar Moth makes absolutely no sense to them. We have an office in the United States that no one’s at, we have an office in Japan that no one’s at because, you know, the crisis is still ongoing. And I don’t feel we don’t have proper ventilation. To have, I don’t feel like we have proper ventilation

C 

To have more than one person. And if it’s only you being there, then what’s the point?

K 

Yeah. So that whole thing is just like, really? Where – okay, so you have these things that you’re not using? And then why would you publish books in English while you live in Japan? Why aren’t these books in Japanese? Why can’t I read them? And it’s like, we can read them.

C 

Right?

K 

They’re available, like, and so doing, you have to do weird stuff. Like we have to print out the Amazon page. And then I don’t know, like, what all of this proof and evidence does for them, because they don’t actually go search on Amazon.

C 

Yeah, I’m not sure either. And this is a general theme of Japanese bureaucracy paperwork. Like when we applied for permanent residency, I had to print out a copy of all of my patents. And print out like the first 20 pages of my dissertation, even though they had a copy of my PhD. From a Japanese university.

K 

Yeah.

C 

So it’s very much like

K 

One of the top tier.

C 

Right, but it’s very much like, well, nobody could fraudulently generate this much paperwork. So it must be real.

K 

Right? And I’m thinking, yeah, there are people who generate fraudulent, we don’t put people who generate fraudulent degrees. So that’s a weird thing in Japan might be like, Well, if we inconvenience you enough, they just feel like you would get fatigued and stop. Like, if you’re coming and wanting to lie to me, I could ask you for enough things that you will just confess under the burden of request.

C 

Okay, so now I’m thinking of it slightly differently.

K 

Okay, how are you thinking of it?

C 

Like how in Western society, it’s In Vino Veritas, like, if you want to know the truth, get somebody drunk. They’re trying to get as drunk on paperwork.

K 

Yeah, the Japanese, the bureaucracy, culture of right is fatigue. Like, you must really honestly want this because you have to want it. And then you have to prove that you want it and then you have to prove that you’re eligible for it. And then you have to prove that he would do something worthy of having it to get it.

C 

And sometimes this is just too much. I went to make a bank transfer. And they like grilled me about where it was going, how come if it was my company, I had paperwork saying that it was my company, but not a letter from the bank saying it was my company with a photo of me. And it was just so much hassle that I went home and I opened an account on what was then TransferWise. And I was like, hey, I’m only being charged a third, there’s not an advertisement for them. This is just like the Japanese bureaucracy at the bank was so bad that I stopped dealing with them on that level.

K 

Yeah, it really is just fatiguing if you’re not ready for it. And so in the family, I’m the one that sort of hurts everyone together and says, Okay, we’re doing paperwork now. And everyone’s like, no, we’re not. Like I have prepared everything to the limit that I can prepare it. And now we’re going to print things. And I and I have a yip. So I’m part of the problem. So if you need my signature on something, or my inkan which in Japan is the stamp of your name, like even to get me to put a stamp on something, I’m like you have my inkan just stamp it for me, which is highly illegal. No, you have to stamp it. And I have to like them certify that I stamped it. It has to be a day, like we have to schedule it, I’ll be like, Okay, on January 7, at 8pm, from 8pm to 8:15, I will sign things. So that sort of puts the deadline on for everybody is like when will Kisstopher sign something? Yes. And that motivates you? And keeps you because you’re like I really need your signature, like, well, you know, a sign you know what time is.

C 

Well, the most serious signature need was when we bought our apartment. And we had to stamp it with our registered stamp.

K 

And we had to stamp every fold of the paper.

C 

Right. So stamp it across the crease of the paper, and then put a revenue stamp on top of that. And then ink my thumb and put my thumbprint on top of the revenue stamp. cuz they were like, there is no way you’re gonna pretend this, wasn’t you?

K 

Yes.

C 

I’m like, Look, I have no thumbs, somebody stole them.

K 

Like, why would we want to pretend that this is our apartment when it’s not? And again, money laundering. The Japanese are just like, you will not launder money in Japan. And I’m like, Okay. I’m sure that it happens. I mean, I’m sure

C 

I’m sure. Yeah.

K 

Yeah, there’s criminal enterprises that go on all the time. And so there’s been like, lots of talk about how like the the Yakuza is kind of fading out these younger gangs.

C 

Well because when we bought our apartment, we had to certify that we were not and had never been members of the Yakuza. Because it’s legal to be a member of the Yakuza. But it’s also legal to discriminate against people who are.

K 

Yes. So for me a big thing that I find I can blame on Japan, which is, so I’m gonna start over, because I kind of mess that up my mind, for me what I find weird, or odd, is that I’ve been getting blamed on Japan in reverse. Like people have been saying they can’t do things for me, or I shouldn’t be able to do things because I’m in Japan. And everybody, if you follow us on Twitter, you know that I was doing my oral defense, which I passed. Yay. And I’m waiting for my ethnic review. To prove that my, my research is ethical. But I picked a survey and they’re the easiest to prove ethics on. So that’s just a matter of riding out the clock. It takes them like 10 days or something like that to do that. But it was really hard to convince my chair and co chair that Midnight Japan time was okay. Because they’re on the east coast of the United States. And there is no time. Like,

C 

Yeah, I think you’ve got one in East Coast time and one in Central Time.

K 

One on East Coast, one on West Coast.

C 

Okay.

K 

So it was just like –  or maybeit was central, I can’t remember. So it’s really difficult because we’re working in three time zones. And I was like, you know, doing it at 10, nine and 10am. Your time was okay for me. I’ll do it at midnight. It’s not a big deal. And they were like, no, no, that’s too inconvenient for you, you can’t possibly and so we did a test call with me at midnight and I was fine and okay. And then we had to do it again at midnight. And I was like there’s no time that there’s no positive overlap. Because I want it to be convenient to them not to me, then like, no, no, let’s make this really important speech that I’m the decider of convenient to you. And like, no, let’s create goodwill by inconveniencing in me and making it convenient to you. Is my mindset.

C 

I think that’s a better mindset. And I’ve seen people do it like, a few months ago, I was interviewing for positions. I asked people like, Yeah, can you interview at 10am? Australia time, which is 8am here. They’d be like, sure. And then you talk to them. And you’d find out that they don’t work in their countrt;s timezone. They’ve been working in the US time. And so it’s actually like, the middle of the night for them. But they didn’t say anything. They didn’t want to be inconvenient. I think it happens a lot that people who want something or need something are much more likely to be flexible silently.

K 

Yeah. I’m vocally flexible, though.

C 

Yes. But sometimes, because you’re vocally flexible, you have to fight to say, no, I really want to be flexible this way.

K 

Yeah. So something that’s odd and true about Japan is, it’s really difficult to mail anything out of Japan. You have – you – so like, in the U.S. I could box something up myself and send it. And in Japan, you have to buy a specific, you have to buy a box from the post office. And you have to box it up at the post office and seal it at the post office and then mail it and you have to do all of that. There’s an area to do it in.

C 

Right.

K 

But you have to do all of that before you can mail it. So I don’t mail anything to anyone. I don’t so every if you ever get mail from us, it’s sent from the US. It’s not sent from Japan.

C 

Well, sometimes people get couriered stuff from us, because FedEx will come here and pick up. We can book online, I’ve done this before you can book online, and they’ll drop off a bunch of envelopes or boxes or whatever. And then book online for the pickup. It costs a lot extra. And if we if on days, when I feel like figuring out the system, we could take packages to 711 and have the mail from there, but not through the Postal Service only through private delivery.

K 

That’s so ridiculous. Because the post office is literally behind 7/11.

C 

Yes, it is. But there was a time like a year ago that the post office was saying it would be six months for any package because they had like this whole thing where they were going to send packages to a warehouse, and then let them sit for months so that the COVID would die.

K 

Yeah.

C 

And then send them on. So it was like, Okay, I could send it through the post office, and it’ll get there in six months. Or I can send it through FedEx, and it’ll get there in a week. I can’t wait six months.

K 

What are you shipping?

C 

At the time I was shipping books?

K 

You’re shipping books from here?

C 

Yeah.

K 

Why were you doing that?

C 

Cuz I was shipping signed copies for special people.

K 

Okay. I don’t have a signed copy of your book.

C 

I have copies of my book, and I will sign it for you anytime you like.

K 

Yeah, that’s the problem.

C 

Right.

K 

I won’t ask you to sign it. I just – like no, because I’ll owe you a signature. I don’t know. Like, let’s not get into signature at all.

C 

Because you don’t like signing things. It’s, it’s a hassle.

K 

So something else is kind of weird in Japan that we weren’t scared to talk about. But it’s, I’m obsessed with it is my house set up. And the reason that I’m obsessed with my house set up is because people don’t live in a place where they’re socialized medicine. They are and don’t live in a place where they don’t speak the language that’s spoken in the hospital don’t understand my medical situation at all. And so basically, my bed is as close to a hospital bed as you can get without having electronic – it’s not it’s not you can’t electronically lift it. But the pillows and such are stacked in such a way that we can move the pillows around to elevate any part of my body that has to be elevated. And I have all of the equipment to check my blood sugar, blood pressure,

C 

Temperature, heartbeat, all that.

K 

Yeah, oxygen levels of my blood and all of that here in the house and as long as I can swallow. In Japan, they do not just go straight to IV meds. So in American hospital culture, the reason that they put an IV in your arm is not to keep you hydrated. Most  people think it’s to keep you hydrated, and it’s not so that they have a line open In your arm to inject medication into it. And in Japan, even if you’re in the hospital with an IV, they still give you pills to swallow.

C 

And they just assume that you won’t cheek – cheek them. Like that’s so bold.

K 

They just assume that what?

C 

That you won’t check them. Because I feel like that’s another thing in the US hospitals, is there like if they give you two pills? And they don’t watch you swallow them and make sure your mouth is empty after? Do they really know that you swallow them. And Japan is like, why would you mess around like that? Of course, you took your medicine.

K 

Yeah. And I’m doing enzyme therapy. So doing enzyme therapy, it’s an obscene amount of pills. On any given day I can I take between 26 and 40 pills. And that just that number is so overwhelming to people. And in the United States, I would be on an enzyme drip. They would have, I would have several IVs going into me at once. I don’t like that because my veins roll and my veins are really weak. And so what happens is something called infiltration. And that is where the vein burst. And the fluid just collects under your skin, and it is so, so painful. And they have to like take it out and find a new IV place. And so with the amount of medication I’m on now, they would have to do with something that’s called a PICC line, which that’s where it’s at a major artery. And so basically, I would have an IV in my chest. And I don’t want a PICC line. So I’m staying home as long as I can swallow.

C 

Yeah.

K 

And I’m able to swallow, but I’m really, really sick, like scary amounts of sick. So I don’t know if any of you have ever had a pancreatitis attack? or had your kidneys, liver and pancreas all decide to just freak at the same time and just

C 

Go on strike.

K 

Yeah, so my body is completely on strike. I’m supposed to be on complete fluids. And then if it doesn’t go down in a certain amount of days, I will have to the hospital to get an IV but in I can go to the hospital in Japan and get a nourishment IV where it’s just vitamins and you just go and you get your IV and it takes about two hours. And then you come home.

C 

Yeah, I think I’ve talked about this before after I had my bicycling accident. The rehabilitation clinic I went to had an entire floor dedicated to that had like 50 recliners and people just go up there and get their nourishment for the day.

K 

Yeah, so I kind of feel like that’s the path I’m headed on. But people are ghoulishly. I feel ghoulishly waiting for me to be hospitalized and incapacitated. And that’s been more challenging than I expected.

C 

Yeah.

K 

And more hurtful than I expected. Like people are DMing me like, very angry that I’m not dead. And not just been quite shocking. And so that – I guess I’m talking about it today. Like I meant for it to be like a light hearted…. Joking around sort of thing that I just I keep it real with y’all. People are hurting my feelings. And they need to stop.

C 

And they don’t they don’t. They don’t. Your situation doesn’t make sense to me, and the only way for it to make sense to me is if you die.

K 

Yes. So multiple organ failure. I do have multiple organ failure, but it’s enzyme based due to the biliary tract, which is different than having cirrhosis of the liver, I don’t have cirrhosis. And I’m not an alcoholic. I don’t drink and so most often, the type of organ failure I have multiple, when you have multiple organ failure, it’s due to alcoholism is due to the consumption of alcohol. Or it’s due to hepatitis.

C 

Yeah, I’ve been at hospitals with you in the US where they’re like, We need to check your your peak flow. And then they give you a breathalyzer instrument. And I’m like, I grew up with asthma. I’ve had my peak flow checked hundreds of times. Yeah, that’s a breathalyzer.

K 

Yes. Like the breathalyzer, I’ve had drug tests done and they’re not doing that to me in Japan. But in the United States, they did that to me. So I think that is a really American mindset.

C 

I think so yeah.

K 

That what’s going on with my body must be dragged in DC I think

C 

of it. It’s the Doctor House mindset. Like, don’t trust patients, everybody lies, everybody’s a drug addict. You’re totally justified going and breaking into their house or committing whatever crimes to get to the truth of what’s going wrong with them because you can’t figure it out just from the symptoms.

K 

So you’re talking about the TV show House? Yeah. So we watch the TV show house until they did the porphyria episode.

C 

Yes. Which is so awful like episode name is cake. And it was like, no, no, just no. Nope.

K 

Yeah. So it’s really – so there are some people who want to be rare, want to be special. And it’s really, I’m really challenging for them. Because I have the rarest, like there are 2 people on known to the medical establishment in eight different countries. I’ve gone to eight different countries and only me and Rasta, my son have hereditary corproporphyria and lupus. We’ve talked about before how like, I went to several countries, and the world leading specialists on hereditary corproporphyria had never even met a person with it. So they’re studying old samples. So I, of course, I give them samples of everything. And I donate so that they can research on my tissue or whatever, I don’t care. They’re just not doing it on my body. And when they run out, they run out, I’m not going back to give them more. And so when people are expecting you to have like a typical, what they experience, or what they understand, as should be my lived experience, they feel like I’m a fraud. And I feel like what am I gaining from this? There’s no GoFundMe.

C 

Right. There’s no appeals for money. And you’d be like, because we live where they’re socialized medicine, it wouldn’t feel justified to me because it does not cost us here, exorbitant amounts of money that, that you’re sick.

K 

Yeah. And I And if anything, it’s detrimental for me to be so honest about it, because I can now I can’t live anywhere, but Japan.

C 

Right.

K 

Because there are a lot of countries that if you have a chronic illness, they will not ever give you residency. Like Australia is one of the countries that you have to put down whether or not you have and

C 

yeah, and they go on on average cost. So the fact that you’re selling sicknesses probably costs us less than $1,000, a year most years beyond regular health care. Because the deductibles and such. Yeah, they would say no, no, no. But in Australia, this would average $50,000 a year. So that’s what’s being charged and no, you’re too expensive.

K 

Yeah. So I’m not benefiting in any way. Right. And people are being really aggressive with me. And I’m just asking everyone to stop, stop being aggressive. I really appreciate all of the Virtual hugs, and the nice commentary.

C 

Just the expressions of sympathy or like I care about you or things like that are nice, but I care about you. And therefore I want you to know that I know your sickness better than you do, is not actually caring.

K 

So saying that you’ve researched my illness, and you know it better than I do, is really hurtful. Because one, you’re calling me a liar. And then two, you’re giving me that medical advice. And then three, you’re attacking me at a time when I’m frail. And I think it’s really hard for people because I don’t ever seem frail. And so I’ve had people ask me like, why don’t you have jaundice? Well, not everybody who has liver failure has – gets jaundice. And everyone’s like, nope, if you don’t have jaundice, you can’t possibly have any, any issues with your liver. And that’s that’s not factually true. And I find it really interesting because I read when I read American medical information on the internet, that’s what it says. So I taught them you know, the leading, it’s really interesting to me, the country that is most advanced when it comes to liver health is Korea.

C 

Yeah.

K 

And there are really wonderful papers written by Korean doctors about and there’s they’re the at the cutting edge forefront when it comes to billary health. And so billary health is all of your so from the tip of your lips. To the tip of your nether regions, that entire tract. And that entire system is the billary system. And so the gallbladder, the liver, the kidneys, the ureters, all of the ducts, and all of that is part of the system and part of that system breaks down or becomes inflamed, it can affect the entire system. And that’s what’s happened to me is that part of that has become inflamed. And it’s, it’s affecting all of the systems. And it can be something that’s called intermittent. And this is where everybody gets really pissed off at me is that sometimes my organs are failing, and sometimes they’re not.

C 

But we saw even doctors, even even your own physician get pissed off at you for that because they do a CAT scan when you’re hospitalized, and be like, Look, you have necrosis here. And then the next day they do it again and be like, and it’s recovering. Yeah. And they’d be angry at you for that. Yeah.

K 

That’s really freaky. So the necrosis thing do you want to describe the necrosis thing.

C 

No, go for it. You tell a better story on this.

K 

It’s not a story. It’s the truth. So I have a really poorly named disease called lupus anticoagulant, which anticoagulant music, your blood doesn’t coagulate.

C 

Well, so that’s the marker. So maybe I should tell this story.

K 

Yeah.

C 

So you have that as a marker. And some people with that as a marker, don’t have any symptoms. But in some people that causes SLE, systemic lupus – I forget what the E is for. And so you have that type of lupus, but what it means is that you have defects in the blood things that are responsible for the control of anticoagulants. So it’s not the same as hemophilia because it doesn’t affect clotting factors. It’s just like this weird thing. And it interferes too with the porphyria which porphyria is itself a problem with the production of certain enzymes within the blood, certain steps and what type of warfare you have depends on what step is broken. So between the two, you have chronic acute pancreatitis, which means you have acute pancreatitis, over and over. Yes. And so the doctors like you must be an alcoholic. No, actually just genetics.

K 

Yeah.

C 

And you have chronic inflammation. Without the associated problems of some of the chronic inflammation, like the inflammation itself causes problems, but they can’t find reasons for it so that I kept idiopathic inflammation, like no, again, this is the lupus autoimmune disorder causes inflammation. It’s just not presenting in the typical way.

K 

Yeah. And so it’s extremely painful. But I can’t take a lot of pain medication, because I have to worry about the load on my kidneys and liver when it comes to processing anything with pancreatitis. I should be nothing by mouth right now. But I told them that I would rather write out the pain than be in the hospital on an IV. Yeah, because I can still swallow. And they’re like, okay, like in the United States, we’d be like now you have to be hospitalized because they make a lot of money. But in Japan, my doctors are not incentivized to have me be in the hospital. And in Japan, my doctors have experienced this is a very unique to me experience. But when I am hospitalized and away from Chad, I deteriorate more quickly. And my doctors like okay, we don’t understand this weird codependency. But we know that you have this codependency because Chad can’t come and visit me. And they have charged me when I stay at home and I have access to chat versus when I go to the hospital and don’t have access to chat. And right now, there’s no like visiting in Japan is really strict. It’s not like in the US it was kind of loosey goosey where Chad could come and sit in my in my hospital room all day with the computer on it wouldn’t be a big deal.

C 

Yep.

K 

Whereas in Japan, you’re encroaching on other people’s rights. I would have to be out of bed to be with Chad so we were both have to sit in the visiting area. And that would be painful for me to have to set up in a hardback chair all day because I am prone. I do stay in bed all day, laying down because whatever’s the most comfortable position. To be in. And so they’re like, Okay, we know if the hospital hospitalized you, you’re gonna deteriorate because you have this weird thing. And they’ve done studies on it. And for some people, they found a biological connection that you have biological compatibility, and that is intimacy. And some people fall in love based off of this biological compatibility. So Chad and I are biologically compatible.

C 

I provide the vitamin C that you need, that name isn’t taken is it?

K 

Well, you think it’s weird. I showed you the study on it? And you still think it’s weird.

C 

Yeah, I still do think it’s weird. There are things that I know are true, but are still weird.

K 

So how do you feel being biologically compatible with me?

C 

I feel like a happiness donor. Like you’re just like, hey, give me some happiness running low over here. And you just got fitting your organs. And you’re like, okay, that feels better.

K 

I did get Chad depleted, they’ve passed, they have tested it in Japan, they have resource dead. When I explained it to them, they were like what you’re saying, sounds so wild. We’re going to test it and research it. And the the doctor, so they’re, I think with Eastern medicine, that there’s this myth of Eastern medicine that – so Japan is not part of

C 

TCM, is traditional Chinese medicine. Japan does not practice it.

K 

Yeah. But they are aware of it. And so they assume that, that I just love my husband very much. And I do love my husband very much. But I was like, let’s test my levels, and test, test my levels with 48 hours of no physical contact with Chad and then test my level 48 hours with normal contact with Chad. And there is a difference. My levels are more stable when I have physical contact with Chad. Yes. So it makes it really difficult for him to travel for business or anything, because he is part of my health care regime. It’s kind of it’s so bizarre.

C 

I think it’s kind of funny. And I think it’s probably more common than people know, because everything is so very much controlling, especially in American medicine, I think, yeah. Because in American hospitals, they will threaten you with bankruptcy, if you leave when they don’t want you to by saying, you know, we’ll say you left against medical advice, and your insurance won’t cover this $300,000 bill that you’ve generated. Yeah. But we’ve been here and they’ve taken kissters blood pressure and been like, ooh, this is too high. And Kisstopher says hold on a second, baby, baby, and I’ll come over and put my hand on her arm. And they’ll do it again. They’ll be like, it is 40 points lower. What happened?

K 

Yes. So being with you and talking with you, keeps me calm, unless you’re naked, and then it increases my blood pressure. Because there’s an excitatory response. And it’s really like how

C 

We have not tested that one with doctors.

K 

We’ve tested that one at home. I’ve showed you at home.

C 

But I’m just saying that. I’m just clarifying that. I do not get naked at the doctor’s.

K 

Is it pressures a lot of pressure?

C 

There is a lot of pressure for me.

K 

Because you’re my medicine.

C 

Yeah.

K 

Are you being serious?

C 

Yeah.

K 

So what’s it like? I don’t know what it’s like because I’m not medicine for you.

C 

It’s like drink me in because in Japanese you drink your medicines rather than

K 

Yeah.

C 

Yeah.

K 

Like you drink chocolate. Anything melts? If the melted form, then you drink it. Yeah, eat it. That’s interesting to me. Like, what you and what you drink, and what you swallow.

C 

I think I feel a lot of pressure to justify less so now. But previous places that I’ve worked with be like, well just be here for the day. You know, just take a short trip. It’s not gonna it’s not gonna kill Kisstopher. Like, I am not sure of that.

K 

Yeah, we are not at all.

C 

And my current job knows that. If I have a meeting or something, and you need me, I will miss that meeting. And that’s not something special to me. That’s something that everybody in the company knows is expected for them as well. So I feel like I don’t know whether it was that way when I started. But no, it’s that way now. That that everybody is allowed to prioritize taking care of themselves on their partner over making meetings or whatever.

K 

Yeah, I think I’m the most disabled partner. I don’t think anyone has a partner as disabled as.

C 

I am. Yeah, I’m not sure because it’s just not a big deal. Like, I’m get emails from somebody saying, Hey, I’m out for the day. And it’s not a discussion. It’s just their need. They need to be out for the day. So I don’t know.

K 

I think he helped me not fall into the I haven’t been doing as good mental health wise as I would like. But I think that you’ve been really helpful this go around. And like, if this is the new fear with chronic illness and chronic pain is, is this the new normal? That’s always the fear, like, Is this the new normal? And we can look back and say we keep just stacks and stacks of, we keep every single one of my tests and we can see the flow of my test. And I wish that it was seasonal. I wish that it was predictive. And it’s not, I can’t predict it. But usually like food cravings will be

C 

fine. So for those who want to look into this, but should absolutely say nothing to Kisstopher about it. We keep monthly records of your complete blood count panels.

K 

Yeah. And so I don’t share my values and my numbers, because that just feels really intrusive. And I have had people ask them, Well, what are your values?

C 

Okay. Where did you do your fellowship in endocrinology? That’s what I want to know.

K 

Yeah. And what are you going to do with this information? Are you going to cure me? Because if you have a cure, I’ll listen to it. But who have you tested it on? Who’s your human trial, because I’m the only person with lupus, hereditary coproporphyria and lupus anticoagulant.

C 

And trust me when I say cinnamon is not the cure. Because that’s the one weird cure. They were. They were advertising for a while. You – like, eat cinnamon. Like no, no, you’re so wrong.

K 

Yeah, I if I eat cinnamon I have a psychotic break.

C 

Yes, literally.

K 

Like literally, I will not know. Reality from imagine I’ll have auditory and visual hallucinations. And it’s really, really uncomfortable. And I love cinnamon. And so we didn’t know that cinnamon would cause that. And me because I was making like, so they were saying pumpkin Japanese pumpkin and cinnamon was the best thing for me to eat. So I was eating Japanese pumpkin and cinnamon every day for like, a month. Yeah. And then I started having full on visual and auditory hallucinations. And I was like, what’s causing it? And they were like, we think you’ve overdosed on cinnamon.

C 

Because it has those effects on everybody in sufficient doses.

K 

Yes, I shows you how much I was eating. I was eating like a bottle of cinnamon. Like, wait, when you go down the spice aisle. I was eating like a bottle of cinnamon a day. Yeah. And so come to find out that yes. It’s like being on acid. It’s not only being on acid is really weird.

C 

It’s being on nutmeg. Yeah. Cuz that has the same properties.

K 

You have to eat A lot of it. And so if you guys like How can you eat that much? Well, just as anybody’s eaten so much carrots their hands have turned orange is possible to eat like a lot of something. And I really love any sort of squash or pumpkin. I really love the flavor of them.

C 

Yeah. So there’s some of your favorite fruits.

K 

Yeah, and so the Kabocha is really delicious. It’s really tasty, like, and I’m totally craving it now. But I know that like, one my body couldn’t process that. So I’m supposed to be eating my only clear liquids.

C 

Yeah, so super, super, super fibrous thing is not the right thing right now.

K 

Yeah. So eating like, we have broth. We have Boolean eating Boolean soup. And I can eat bullion soup with vegetables. If I’m feeling okay, that day if like my body can tolerate it. So as long as I’m not throwing anything up as long as I can keep things down, so that more complicated than if I can swallow if I can swallow and keep things in my stomach. Then I don’t have to be hospitalized. But if I start to vomit, I have to be hospitalized because I have to have IV food. Yes fed intravenously.

C 

Yes, because not eating will trigger porphyria. One of the best known triggers of porphyria Yes, fasting.

K 

So that’s really nice to have doctors I understand because I’m obese. And I don’t feel any negativity about that at all. It’s really nice to have doctors, like you have to train Japanese doctors because they’re like, you’re fat. That’s what’s wrong. Yeah. Because you’re fat

C 

American doctors like that, too.

K 

Yeah. And then I have one doctor that’s like, Oh, you’re exercising a lot this month, I can tell because your values are good. I promise you, I have not exercised at all. And they’re like, No, you’re exercising. I’m like, No, I’m telling you. I’m not. And the doctor left me in the eye and said that I’m going to write down you exercise. Okay, you can write that down. I mean, if that makes you feel good.

C 

Some of the times I’ve been there, I haven’t gone since COVID. Started. But I used to go to your appointments. And sometimes they look at me and say, Hmm, when they when Christopher is sleeping. Does Christopher get up and exercise in the middle of the night? Like you’re asleep? Exercising? Yeah, I don’t know it. Yes.

K 

Like the only way that you could be improving the way that you’re improving, because so tested for last, all of my levels were just like, awesome. They’re just like dream levels, looking like I was in 100% recovery, and then in a matter of weeks, just crash. And so they’re like, This is so strange. And the doctor said, Maybe I should cut back on my exercise. Because the time for that the doctor was like, you’re exercising as why everything’s so good, right? And they’re like, well, now you’re taking it too far. And then like, I promise you, I haven’t been exercising, like my weight has been exactly the same. For years. Yes, I have chosen the weight that I am. This is the weight that I like to be for the lifestyle that I like to live. And when I drop a bunch of weight, I regain it. As soon as I’m feeling better again. Just sometimes I’ll lose a bunch of weight. Because just because I can answer everyone’s like, Oh, I so wish I could, you know, have your thing where you would just drop 20 pounds in a couple weeks? I’m like, No, you don’t understand what’s going you don’t understand the cost of that to me.

C 

Yeah, because you have your normal levels, you have the Japanese test, they give them to you. They give you the results, which is a contrast with America where you have to fight to get those results. But they’ll have a normal range. And you’ll have most of your stuff in the normal range. And a few things might be high or low. Like depending on how you’ve been doing your cholesterol might be a little high or it might be normal, or this or that. Yeah. And then there’ll be like a couple levels that are like 25 times what they’re supposed to be. Yeah. And the doctor is like, what is going on here?

K 

Yeah, why is this one thing? Yeah. So much higher. It’s usually my amylase.

C 

Your it’s usually your gamma GTP, which is related to the amylase. The amylase is often high, but the gamma GTP is the one that’s like, many, many times what it’s supposed to be

K 

And the gamma GP GTP is liver. Yeah. Yeah. Sorry. I know I wasn’t gonna say my levels, but

C 

I didn’t say level just how many times I was supposed to.

K 

Oh, yeah. We said names of what’s been checked? Yeah. I do get full blood panel every time they do check everything full blood and urine. They don’t do other stuff. But they can. Yeah, I’ve asked them not to. Not to do this. I don’t mind being scoped and scammed. So scopes is for me to be what I call being scoped is they put a scope down my throat while unconscious, and I can feel it and look around my stomach and my esophagus and then a scope up the other orifices while you’re awake and unable to fill them such. And so I get those kinds of scopes and such about once a year maybe. Yeah, they’re not my favorite. By far. I really don’t like being scoped it’s so uncomfortable. And I remained feeling uncomfortable for days afterwards.

C 

Yeah. Now if it is your favorite, we don’t need to hear about your fetish.

K 

So today’s was just all over the place because I’m all over the place. And thank you for listening and hanging in and thank you for if you’re one of our lovely supporters. She’s send lovely messages on Twitter. Thank you. I really appreciate it. It does mean a lot. It does make a difference and If you’re one of our patrons, today we’re talking about why people don’t like us because we’re successful.

C 

Yes. Jealousy over even

K 

succeeding and people some you’re very angry that the process sucks.

C 

Well, jealousy over even perceived success. Because yeah, we’re saying yes, the press is succeeding here. But we don’t boast, like, look at how successful the press is. And you can’t tell.

K 

Yeah. And so a lot of it has to do with perception. Yes, like my hell. Yeah. So thank you so much for listening this week. And we will talk to you next week. And we hope that you follow us on over to Patreon. If you become our patron for just three bucks. You can Yeah, because if you just do one month and do three bucks to have over 100 was like over 150. Now

C 

Yeah, you need to binge you need to get to work right away. If you want to stay within one month,

K 

it might take you like, you know, nine bucks or 12 bucks to get all the tech tees but I think some of them are interesting, and some of them are valid, like behind the scenes of the podcast, or our thoughts that we didn’t do in the main episode, or stuff about publishing. So yeah, I was facing out. So we’re gonna head on over to the Take two. Bye bye