K: So lately I’ve been thinking a lot about my health and everything I have going on there. And about life with a rare and chronic illness. So I have hereditary coproporphyria, which is a blood disorder
C: And hard to spell (K laughs)
K: Very hard to spell. And no-one… I’ve yet to meet a doctor who’s met somebody with HCP.
C: Other than you.
K: Yes, other than me.
C: Yeah.
K: Because we went to Oregon in the United States
C: Right
K: Where they have the two leading specialists in the US, who specialize in HCP, and I was the first person they were meeting with HCP. It’s extremely rare.
C: Yes.
K: So, for me, having a really rare illness that’s chronic… it’s a little bit challenging because nobody really understands what to do for me or how to help me, so I have to do a lot of research on my own and be my own best advocate. And I think anybody with a chronic illness needs to be their own best advocate.
C: Well, I think it’s an interesting case because, for HCP there is a definitive lab test. So there’s this lab test, and the lab test says that “Yep, you’ve got HCP.” So I think that your doctors believe you have HCP, but don’t know how to help you. And I think a lot of people with chronic illness their doctors don’t believe the illness, and that’s a barrier to help.
K: Mmm. I think there’s also a good portion of people out there that the doctors agree that “Yes, you have this thing” and don’t know what to do when it’s chronic.
C: Yeah, absolutely.
K: My lupus is… lupus is really well understood in comparison to HCP
C: Right
K: But they still don’t know what to do for my lupus. They don’t… and I should say the treatments that they suggest, I don’t want. Like, I don’t want the steroids, and I don’t want any transfusions. For the HCP, it’s blood transfusions, and then for the lupus it’s steroids. And so I don’t like the standard treatment because of what it would do to my body.
C: No, I feel the same way. Like, epilepsy there’s a lot of different treatments for it, but they all come with side effects.
K: Yeah.
C: And so, I think that most chronic illnesses there’s a balance between the side effects of the treatments and the effects of the illness itself.
K: What I find interesting is that your epilepsy, specifically, is the difference that taking naps and valium. Like, not doing them in conjunction. Well, sometimes in conjunction. But it’s day and night for me when you take valium regularly and when you take naps regularly.
C: Right.
K: I feel like we have … that the frequency of your seizures are greatly reduced.
C: Yes, they are. And valium is one of those things that it’s like if you go into status epilepticus, where you are having a continuous general seizure, they would inject with valium. But it’s not recommended as an anti-seizure drug because it doesn’t prevent them as well as other AEDs (anti-epileptic drugs). But, for me, the effects of those drugs were terrible. Like, they made me unable to think. From carbemazepine, I lost basically all of my teeth. I think I have four real teeth left.
K: You have way more than four real teeth.
C: No, no. I have lots of crowns and things. My teeth started shattering.
K: Yeah, but no, I don’t want people to have this vision of you as this toothless dude. You’ve got teeth.
C: I’ve had good dental work.
K: Yeah. But, I think your bottom front teeth are all yours.
C: Yes, those are the four ones that are all mine. (K laughs)
K: So none of your molars are yours.
C: None of my molars are mine, neither of my incisors are mine, and then my top front teeth is a bridge, so there’s a lot teeth that I’m
K: Well, those are yours. You’ve still got the receipts. (Both laugh)
C: I broke ‘em, I bought ‘em.
K: Exactly! So I think it might be helpful for people to understand the type of epilepsy that you have.
C: Yeah, so epilepsy has a lot of different… I don’t know if there’s different types of epilepsy, but there’s different types of seizures. So the types of seizures that I have are what used to be called “complex partial seizures” and now they’re called “focal impaired awareness seizures”. Which means that unlike in the movies I don’t fall down and just start convulsing. And I, so that’s the main type of seizure I have. I also have nocturnal seizures, which is where I do convulse, but only when I’m sleeping.
K: Yes.
C: And I have simple seizures. So most people have simple seizures at some point in their life. Which is just where your muscle starts twitching randomly. That’s a simple seizure. But I get those a lot.
K: Yeah.
C: So, and those are just not even annoying. Sometimes they’re interesting, because they do things to my muscles that I could not consciously do.
K: Mmhmm.
C: Like, if I have one on my thigh, my thigh will jump like 50 times in 10 seconds, with no effect on any other muscle. So it’s like “Huh, that’s kind of cool. My thigh is like wobbling.” (K laughs) So those don’t hurt, don’t have any lasting effects. But they’re indicative of a general pattern. And then there’s of course the generalized or what used to be called “tonic-clonic” seizures, where you fall down and convulse. And the “tonic” is your muscles relaxing and the “clonic” is your muscles seizing up.
K: So something that I have found very interesting about your seizures are sometimes they’re connected to emotionality and emotional response, and that was something I was unaware—I’ve learned so much more about epilepsy since marrying you, since dating you and getting to know you. And it really does affect every aspect of your life.
C: Yeah. And I know that as a student, too—so, a lot of kids… I don’t think that I have… because the thing with seizures is that without an EEG it’s hard to say what type is what. So I had an EEG study so that’s how I know that I have complex partial seizures and that specifically they’re temporal lobe, for the most part, but I do have some frontal lobe involvement. Yada yada yada. But I didn’t have absence seizures, which is more common in children. For them to have absence seizures where they basically just… pause… and then come back with no awareness that they were paused. And often people outgrow those. But it causes them to be evaluated as lazy and inattentive students.
K: Mmm.
C: So I wasn’t diagnosed with seizures until I was in my 20s.
K: Yeah, the diagnosis process is hard because I wasn’t diagnosed with hereditary coproporphyria (HCP) until I was in my 30s.
C: Right.
K: And I wasn’t diagnosed with lupus until I was in my 30s.
C: While you were in a hospital stay for a porphyria attack.
K: Yes, and so for me the damage that happened to my body over those thirty years of no diagnosis was significant.
C: Right.
K: And I think that we… I don’t know. Something needs to change in the way that things are diagnosed. I don’t know what. I don’t have the answers, but I just think something needs to change. Maybe the spirit/energy of like “Hey, you know, something’s going on with you. I hear you saying something’s going on with you, and let’s do… let’s really get into this differential diagnosis and let’s rule things out and rule things in and do a lot of tests.” With that said, I’ve been very fortunate in my life that I’ve always had health insurance.
C: Right.
K: So I’ve always had the ability to go to the doctor. And so it hasn’t been an issue of access for me. Because I’ve been very very fortunate, and I do feel like I’ve been very privileged to always have good medical insurance, and to always have access to some of the top doctors, the best doctors, in the world by geographical location. Because I was able to go to specialist hospitals and see specialists in the United States, and when I was hospitalized, they did bring a specialist to come in and diagnose my lupus. So, all of that came with a huge price tag.
C: Yes.
K: Even with the insurance. So, to me…
C: Well, I know that the bill that we were sent, most of it was paid by the insurance, was well over a million dollars.
K: Yes. And so when you hear that number for a diagnosis, I feel like, without good medical insurance there’s no way that I would have been able to go through the differential diagnosis process. Because I had to be in hospital to get the diagnosis because of the different tests and the different situations that they needed my body to be in for test for certain things.
C: Well, and I remember the path to you getting in the hospital, too, so, you know… you didn’t get diagnosed until you were in your 30s because when you went to the doctors they would just tell you “your complaints are irrelevant, that’s just part of being a woman, just stop complaining so much.”
K: Well, and I think too I had a lot of female problems and so
C: That’s what I’m saying. They just got all lumped in as cysts.
K: Well, and my gynecologists were all amazing. My gynecologists never said that. My gynecologists always did a surgery on me because I had a lot of cyst issues, and so the fact that I have a lot of female issues with my reproductive system… sort of masked the main thing that the diagnosis of hereditary coproporphyria, besides you know the urine test is the way that the pain is located. And so even when I was saying I had pain in my lower left quadrant, they were saying “well, no, that’s being transmitted from the cysts you have on your right ovary.”
C: Yeah, because every time they looked they found one. So I think that… I’m not saying your doctors are bad… I’m saying doctors are trained to spot patterns, and so they spot normal patterns. You know, sometimes they say, you know “If you hear hoofbeats, think horses, not zebras.”
K: Yeah.
C: Which only works if you live in a places where horses are dominant. So, for you, because of your genetic background, because you know, you’re genetically Ashkenazi Jewish, you’re Indigenous… both of those groups are at higher risk for porphyria.
K: Yes.
C: So you should have been evaluated as at a higher risk for porphyria than the general population.
K: Yes.
C: But I think instead, you got told “Well, the easiest explanation is that it’s just female problems.” And then wellness culture says “Hey, if you’re not feeling good, like… get out in the sun. Go for a walk. Do some exercise.” Like, all of these things that would exacerbate your condition. And then it says “Well, if you’re not feeling better from it, then you’re just not trying hard enough.”
K: So, for me, I think that a crucial part of the diagnosis process is the Internet. You know, and I know everyone says “Don’t Google Dr. me” and “Don’t Google things, you won’t find new things”. This, that, and the other. I feel like, you know what, I am going to Google some stuff. Because you’re not finding out what’s going on with me. So I’m going to Google it. Get over it. I’m going to do research, and I’m going to say “Hey, I think this is what’s going on with me. Give me the tests.”
C: Yes. And so
K: And I don’t understand why doctors don’t just want to give people a test. Like, they make money off of it, so they’re going to profit from it. But it’s like they get exasperated and irritated. I was fortunate that my doctor didn’t. He was confused and condescending, but he wasn’t mean.
C: Okay, I was going to say your doctor didn’t, because… and he was your primary care physician, and he’s probably retired but not going to mention his name… but when we Googled it, you and I, and I said “Hey, this sounds like porphyria, all of these symptoms”, and we went to him and said “We think it might be porphyria,” he laughed.
K: Yeah.
C: And he said “nobody has porphyria. It is not porphyria. I see you’ve been Googling.” Or something like that. And we said “Can you please test her for it anyway?” And he did, and the tests came back and he was like “Holy Crap, It’s Porphyria!”
K: Yeah.
C: And then he did the good work to educate himself on it and be a really good ally for you in that.
K: So for me, I’ve never been one who’s afraid of firing my doctor.
C: Yeah.
K: How do you feel about firing doctors? I feel like people should fire their doctor more often.
C: I mean, now in Japan it’s a lot easier because I don’t have to worry about insurance. But I was always nervous, like, that I’d be accused of doctor shopping or diagnosis shopping or there’s, like, a culture that says that if you see more than one doctor, then the first doctor was right and you just didn’t want to hear it. I think the last doctor that I actually fired was a neurologist who I had an appointment, and when I had been waiting for three hours past my appointment time, I left and switched to a different neurologist.
K: Wow. You’re like way more patient than me.
C: Well, and the normal was to wait for an hour past my appointment time. He never ever ever, not once, saw me on time. But three hours, I was just like “No.”
K: Yeah, I do… so here in Japan with no appointment, I can go my doctor any day that he’s open and I’ve never had to wait more than 15 minutes.
C: Yeah, my doctor, too. I have a different doctor, and I see when I go there—there’s no appointments taken, I just go there—when people come in sometimes they’ll say “Oh, I’m sorry, it’s going to take 45 minutes before the doctor can see you. Do you want to come back another day?”
K: Yeah. And so in the United States, I don’t think I ever waited under an hour.
C: No.
K: And so for me, my 90 minutes was my cutoff when I had an appointment. So I would usually get taken into the room between 30 and 45 minutes after the time of my appointment, and then I’d wait an additional 30 minutes.
C: Right.
K: So, for me I always felt like, “Okay, seeing a doctor is about a two hour thing for a ten minute appointment.” And now, here in Japan, it’s so much easier. I go in, I talk to the doctor for maybe like five minutes. It’s literally like, at the most, a half hour.
C: Yeah, mine’s about the same. He lives close enough … he doesn’t live… he works close enough that I can walk. I go in. I see him. I think once it was 20 minutes. The appointment takes maybe 10 minutes at most, if I have something to discuss. He takes my blood pressure, my heart rate, he tells me that once again my aortal valves are all fine, I have, you know, “no murmur” and all of that. We talk about any medication side effects, and he writes the prescription, and I’m out of there.
K: Yeah.
C: After I pay my six dollars. So…
K: Yeah, so I’m just amazed by the difference. And in… it’s so interesting to me that a lot of expatriates don’t trust Japanese doctors. And I absolutely love my Japanese medical experience. Like, being in the medical system, and I’ve gone to the hospital, and I do take an interpreter with me when I go to the hospital because I have a doctor that doesn’t speak English, and my Japanese is nowhere good enough. So, the language thing I do see that as a barrier, but my doctor that does speak English, I feel like he’s very passive. And I do have to tell him what I want. But once I say what I want, I get it, and it’s not a problem.
C: My doctor is also very passive. I think that’s Japanese medicine in general. But because I’m a math guy, I look at the outcomes. And the outcomes say that Japanese medical care is superior to American medical care, on average. So I think that there are life-saving things that could happen in the United States that wouldn’t happen in Japan, at the extreme end of things. But I think it’s like talking about, you know, “Well, what about how billionaires are taxed?” Well, that doesn’t affect most people.
K: Yeah.
C: So, I think if you, you know, don’t want your life saved at any cost whatsoever, then Japanese health care is better. People live longer
K: What do you mean by your life saved at any cost?
C: I think that in Japan, there are… you’re less likely to survive, like… I think like in the US there would be a place that if you got in an accident and all four of your limbs were amputated, and your neck was severed, they could probably still save your life. I think in Japan, you probably would just die.
K: Okay…
C: So I think that, like, at the
K: You know there are people without legs and arms that are just fine living their life, right.
C: Absolutely.
K: Okay.
C: That’s why I’m saying lost all four of them at the same time and, like, you’re bleeding from the neck. I’m saying like, just massive accident.
K: You’re saying that you’re less likely to be kept alive in a vegetative state.
C: I’m saying that in a Japanese hospital, they might not be able to get together a team of twenty surgeons to save your life.
K: Oh, okay.
C: The way they would in the US.
K: Okay.
C: Because there’s a much bigger focus on preventative medicine, so my doctor is happy that I come see him every month.
K: Mmhmm.
C: Because it lets him monitor how I’m doing. He looks at what my blood pressure was before, which my blood pressure is always excellent, and all of that. And I know that your doctor, because you have two blood illnesses always does blood draws and talks over with you the numbers between them when you go see your blood doctor.
K: Yeah.
C: And so there’s a focus on overall health and wellness, rather than fixing the illness. And I think, for me, as someone who has chronic illness and disability, that’s been more mentally healthy. Because in the US, a lot of the neurologists I encountered were like “either you take a high enough dose of anti-epileptic drugs that you never have a seizure, or you are noncompliant. And it doesn’t matter what the side effects are.”
K: So, for me, I had an interesting problem in the US. I had access to too much pain medication.
C: Yeah.
K: And so
C: And I don’t think that would be the case anymore. This was 15 years ago.
K: Yeah, so 15 years ago, I had access to too much pain medication, and then here in Japan, I have access to what I feel like is a working dose and there’s no… no sign of addiction or anything… tolerance over time equals addiction blah blah blah, and so I’m able to take Tramadol every day for pain. And that’s just my lot in life for the rest of my life. And it feels very comforting for me that I’m not going to… because in the United States, for me the drug laws changed so much, and the prescribing changed so much. The reason I had access to too much pain medication is because I was going to a pain center.
C: Right.
K: And their whole thing, and they were set up to give high doses of opioids, and so after I had several surgeries, and after major surgery, I got kind of stuck on that loop of doing a lot heavy pain meds. I’m very fortunate that I wasn’t addicted, but it was a big concern… like, I didn’t think I could live life without high pain medications. So having… reducing the amount of pain meds that I’m taking has made me lucid again.
C: Right.
K: And present again, and here. But it was a battle. Because my… it affected the pain center of my brain not having it, and getting off it. So it wasn’t an issue of addiction, it was an issue of my pain tolerance had decreased so much for what I thought would be pain that I could function through versus pain that the medicine can take care of. Because I thought… I thought the goal should be to be pain free. And in Japan, the goal is to manage your pain so that you can still function. But also accept that every day, you’re going to be in pain. You have a chronic pain disorder. That’s just life.
C: Right.
K: And so I like the… I kind of think, for me, I feel stronger in Japan than I did in the United States because I feel like Japan, at least for me as someone with chronic illness, tells me to my face “suck it up.”
C: Yes.
K: But gives me the resources so that I can cope with it. Now, I don’t think that Japan is the place for everybody with chronic illness. I do think socialized medicine is the place for people with chronic illness, just because money. But for my personality and my temperament, I like being… knowing where the boundaries are and being told “We’ll help you up to this point, and then if you can’t do better than this, you’re on your own.” It helps me say “okay, I’m in horrible excruciating pain today, but I’ve got to get up. I’ve got to go to work. I’ve got to get moving.” And, I don’t know… that doesn’t sound nice, though.
C: Well, I think there’s a difference. I think the US, what they were saying is “It’s possible for you to be pain free.”
K: Yes.
C: And you would say “Okay, I’m not pain free, can I have more pain medicine?”
K: Yes.
C: And they’d say “Okay, here’s more pain medicine.” And you’d say, “Okay, I’m still not pain free, can I have more pain medicine?” And then at some point, they said “Woah! You’re on too much pain medicine.”
K: But they never cut me off.
C: They never cut you off, but they said “Woah, you’re on too much pain medicine.” They like crept past where they were comfortable with.
K: Yes.
C: saying that you could be pain free, without ever telling you that. Instead they blamed you. They said “well, you’ve developed tolerance” and all of this, rather than saying, “honestly, this pain is not amenable to treatment with this type of drug.”
K: Yes.
C: “We don’t have the drugs that will take away this pain.”
K: And so for me that feels like a cultural difference between Japan and the United States. The United States was really focused on me being pain-free, and Japan is really focused on me having functionality.
C: I would say quality-of-life.
K: I feel like it’s functionality.
C: Yeah… it probably is. (K laughs) A lot of stuff in Japan is functionality. Of like, “Can you make it work?”
K: Yes. “Can you still work?” Because it is a work-focused society. At least, here in Nagoya, my experience has been they’re very pro-work and work-focused and get up and be able to work. And so what that means is that I’ve had to get to a place, and it’s taken me a while to get to this place, to accept that I’m going to be sick for the rest of my life.
C: Mmhmm.
K: That was a tough one to learn. There are days I still kind of struggle with it. Because I was chasing that cure, and there is no cure for anything I have. And also having to face that every day I’m going to be in pain.
C: Right.
K: Every day is going to be painful. That was really really hard for me because I did buy into the fact that I could be pain-free. And that just wasn’t the case. But now, knowing what the bottom line is, and knowing what my existence is, I feel like I’ve been able to adjust and thrive.
C: I feel like that, too. And you’re not at maximum pain every day.
K: No, I’m not at maximum pain every day.
C: So, I think that that… getting the Tramadol lets you be in less pain than maximum pain every day. So there are some days where you’re still like “Wow, I’m in way more pain,” so it can still function as an indicator that something is wrong.
K: Yes.
C: It can function as an early indicator that you’re a lupus flare, that you’re having a porphyria attack… or just you’re getting a cold.
K: Yeah.
C: So I think that in the US, the goal was to suppress all symptoms. And I found that was treatment that was given to me, too, was like “suppress all seizures”.
K: Yeah.
C: And I know, like from reading the literature, that if I could reduce my seizures to zero, that’s like the best outcome epilepsy-wise. But it doesn’t give me the highest quality-of-life.
K: Yeah, because if you reduce your seizures to zero, you can’t think.
C: Right.
K: At that point, you’re just numb and kind of a flat line. And I’m not saying that this is true for everybody…
C: No no no. There’s some people the drugs work fantastically. So I know that you don’t prescribe drugs in your practice. It’s not legal for you to.
K: Yeah, I’m not a medical doctor.
C: But you do refer to a medical doctor for people that need it.
K: Yeah, I have a psychiatrist I work with.
C: So, I don’t want anybody to think that we’re anti-medication. Both of us have medication that we take, as we mentioned.
K: Yeah.
C: Some people need medication, and it fixes everything. Some people need medication to bring things to a tolerable level, and some people don’t need medication at all.
K: Yeah, and so for me I think something that’s different in the way that I practice as a therapist, at least my clients say this is different than other experiences they’ve had, is that they can say “I don’t want to be on medication”, and I’ll say “Okay.”
C: Right.
K: You know, I just let them know what’s available to them, and what my understanding of where the pharmacology is at, and if I think it could benefit them. And there are some people that I’ve witnessed people that take medication, and they’re completely in a better state. And I’ve also witnessed people that take medication and it has no effect. So, I don’t feel like taking medication guarantees better. And I wish that I had had that message earlier in my medical journey. And everybody was telling me “Hey, take this, and you’ll be better.” And I didn’t like chasing better, which is how I sort of developed the mantra “more good days than bad”.
C: Right.
K: Because that’s my goal now. Because “better” for me was just a toxic dynamic and just… it just felt like I was circling the drain. You know, because I wasn’t functioning. I wasn’t present. I was just making it from pain appointment to pain appointment, and that was it. And sometimes not even from pain appointment to pain appointment. I’d have to get supplemental appointments for pain. And I felt like my entire life had become about getting medicated, and getting my medication.
C: Right.
K: And now my life is more about balancing and figuring out what I need and listening to my body, and it feels healthier. And so my hope is that everybody with a long-term chronic illness would take that long-term view, and say “okay, what can I do to get my life to a place where I could do ten more years of this?” Does that make sense?
C: Yeah, that makes sense. And in the US, I thought doctors kind of bully you because of the medical system. I remember one of the times you were hospitalized, you’d been in the hospital for about a week, and the doctor came in and said “She needs to have this surgery.” Said to me, when you were sleeping. “She needs to have this surgery,” and I said “She doesn’t want to have this surgery.” And they came back when you were awake and said “You need to have this surgery,” and you said “I don’t want surgery,” because the MRI had shown that you had a perforated bowel.
K: Yeah.
C: But, this had happened to you before, and it was microperforations that healed. It’s part of the porphyria. And they said “Well, if you don’t have this surgery, then I’m going to discharge you and say that you’re AMA. Against Medical Advice.”
K: Yeah.
C: And, you know, that’s not just the doctor saying “I’m gonna say you were annoying.” In the US, that meant that insurance wouldn’t pay for any of the stay.
K: Yes. Which is what you told them, “If you do that, the insurance won’t pay for it.”
C: Yeah.
K: And he said “Well, I just want you to know how serious it is.” And then they switched from telling me to get surgery every day to, uhh, taking an MRI every day.
C: Right.
K: So every day they would come, and it was so… they were taking MRIs so frequently they were using a mobile MRI.
C: Right.
K: To bring it to my room and take it every day. Sometimes more than once a day.
C: Right. So I think that in the US, there is that kind of bullying that happens because the reason that they relented when we said “well that means that the insurance won’t pay for it” is that we said “and we won’t either”.
K: Yeah.
C: Because they do try and, I think not all doctors, but some doctors, do try and use that to say “Look, you can either do what I say or it’s going to cost you a quarter of a million dollars.”
K: Yes.
C: And that just doesn’t happen under socialized medicine. Because there’s not that financial hammer to hit people with.
K: So I’m not as angry at the American medical experience as you are. I don’t have any resentment or anger even though I had a couple of unnecessary surgeries that later on, research revealed to me that they were unnecessary. And they did jack me up for a little bit. I still have a lot of forgiveness for that, and compassion for where they were coming from. I really don’t believe that any of my doctors set out to harm me.
C: I don’t think so, either. I think the problem is structural. But I think that I do have more upset and anger about it than you do. Because I was the observer.
K: Yeah.
C: I’m not saying I was hurt more. I think you were hurt more. But I think of it like my nocturnal seizures.
K: Mmhmm.
C: I don’t remember them. They don’t affect me, like the next day I wake up more tired than I would if I hadn’t had them
K: Yeah
C: But I know from talking with you
K: You’ve also woken up with bruises and knots and kinks and
C: Yeah, but I know from talking with you that it’s very traumatic to see them.
K: Yeah.
C: So, I think it’s a case where being the observer… all I’m seeing is all the bad stuff that’s happening. I don’t have your internal state.
K: Yeah.
C: And so, yeah, I’m more upset. I’m not upset about the way that I was treated. Like, by the medical system. I’m upset by the way that you were treated.
K: That makes sense. It’s coming from a loving place, and I receive that. For me, my hope is that people listening to this… well, I’m hoping to give them hope.
C: Yes.
K: But it sounds very hopeless. And I feel like even in the United States, I feel like you can get good medical treatment.
C: I think you can get good medical treatment. I think that sometimes you have to go through a few different systems, and I think for some things there is no good medical treatment.
K: Yeah.
C: And that more doctors need to be willing to say that “for this, there is no good medical treatment.”
K: Yes. That I wish doctors would say. I wish they had been upfront with me in saying “hey, there’s no good treatment for you. All we can do is manage this.”
C: Right.
K: And really be clear with people when management is the only thing we can do. And try to stop it from progressing, and here are some things that you can do on your own… I feel like there needs to be more empowerment of the patient, and my hope is that people will advocate for themselves and become their own best advocate and say “Hey, you know what, this is what I want. This is what I’m looking for.” And, for me, diagnosis was not the miracle I had hoped it would be.
C: No.
K: I thought that diagnosis would lead to cure, and it did not. It didn’t even come close to leading to a cure. And it led to a lot of confusion and misunderstanding on my part in terms of what to do, because I … when I went and saw that people in Oregon, they were like “Yeah, we don’t know what to do for you, either.”
C: “What do you mean, you’re the experts?”
K: Yeah, and so it was really, really quite challenging that even the experts were saying it. Because I don’t want the transfusions, because they don’t help.
C: Right.
K: And I knew that because I had a wonderful group that I belonged to, a wonderful group of ladies that had porphyria and talked to me about their different experiences and there was one that got heme regularly, and so being able to communicate with her before and after the treatment, I was able to see that “okay, for me, that wasn’t a big enough payday.”
C: Right.
K: For everything that… all the side effects of the treatment, and the health risks with the treatment. So that’s another part of, for me, advocating for yourself is finding a community.
C: Mmhmm.
K: Of individuals who have the same illness. And I feel like, if I can find a community for porphyria, then I feel like there’s communities for other illnesses as well. And I don’t think that these communities are wonderful and perfect. Because I’ll be honest, I outgrew the community. It was really great for knowledge, and I shared my experience, and I shared my knowledge with them. But once I got the base knowledge of understanding of what I’m going to do, and how I’m going to live, I really didn’t need the group as much.
C: Right.
K: And so, for me, knowing how much you need and what you need was part of the process.
C: I think so. I think that group helped you to kind of… reintegrate into having a social community.
K: Yes.
C: Because being hospitalized for so long was very isolating.
K: Yes.
C: Because, you know, when we were in California and you were hospitalized, we had lots of friends and things, but…
K: Nobody came to visit me.
C: Everybody’s busy. And visiting hours end basically at time their day is ended.
K: Yeah. And so having that community did help me. And then, too, we were in Japan, and my Japanese is busted, so… and I did have some friends in Japan when we… even in those early days. But having that community gave me a safe and healthy place to talk about porphyria and talk about the different things that I was doing. And listen to them and hear them talk about what they were doing. And it was really helpful.
C: Yeah, and I think it gave you a place to say “This is happening to me. Does this happen to anybody else, too?” Which let you identify “Okay, this is porphyria. This is not.”
K: Yes. And so I didn’t go to a group for the lupus because I feel like the porphyria group really helped me understand porphyria, and I have a good understanding of lupus already.
C: Right.
K: Before I was diagnosed.
C: Because your father has lupus.
K: Yeah. Well… my father has never said to me that he has lupus. My mother told me that my father has lupus.
C: I took your father to the VA. Your father has lupus.
K: Okay. (laughs) Well, he’s never said to me. So that’s for another podcast. But because my mother told me, “Hey, your father has lupus. You’re probably going to develop lupus,” I had always looked into it and had an understanding of what lupus was. So I feel like having lupus and being aware of lupus, that changed my behavior enough that it helped my porphyria, because they have a lot of the same triggers.
C: Yes.
K: Like, things that will trigger attacks. So that was really helpful and lucky. I feel like, for you, with… when you were first… not so much with the epilepsy, but I feel like when you were first diagnosed with autism
C: Mmhmm.
K: And we were looking on the Internet for groups, I feel like it was really helpful to find out what other people’s experiences were. How was that for you?
C: I think, this was back in ’99, and it was too early for there to be much of a community of autistic people on the Internet.
K: Yeah.
C: I think that there are a lot of autistic people on the Internet, but there wasn’t a community of them.
K: But we found a couple, like, message boards.
C: Most of those messages boards were populated by parents of kids with autism, which is a whole other thing that I’m not going to get into on this podcast, but I didn’t find it particularly helpful. What I did find helpful was understanding it in myself. And also seeing the… like… I had friends that I could say with fairly high certainty “Okay, if they’re not autistic, they’re very autistic-like.”
K: Yeah.
C: And this was before Neurotribes came out, and before autism became more widely known. It was just before the self-diagnosis questionnaire came out, so… yeah, I think now I have a lot of friends in the autism community online. And that’s very helpful. So I think at the time of my diagnosis, it wasn’t very helpful.
K: Okay.
C: But now it is very helpful.
K: Well, I guess for me, it was helpful because you were reading a lot of really bad books.
C: Yes.
K: Books that I would tell you “Babe, as an expert, working in this field. Don’t read that book!” (laughs)
C: Yes.
K: Because you would read these books and then start telling me my experience of being your wife.
C: Well because that’s one group there was. There was a group of like, people being… I forget what the exact name of it was… basically “people being tortured by their autistic spouses.”
K: (laughs) And I told you that this is not my experience. You are very loving. You are very affectionate. You are very kind. And you are very generous. And I am very happily married.
C: Me too.
K: Thank you. I’ll take that. And so, for me, I think talking… having you to talk through these things with has been very helpful, but also having people juxtapose my experience with has been helpful.
C: Yes.
K: And I think, too, with epilepsy, I felt like we didn’t really have any good resources. And now we do. But back then we didn’t for your specific type of epilepsy. And I felt… sometimes I felt very alone when you would doubt that you were epileptic. And I would tell you my experience, because you’re not present for your seizures. I am.
C: Right.
K: And so that whole process of doubting, “Well, am I epileptic?” And I’m like “Yes, you are, don’t doubt!” And you’d say, “but I don’t think I’m having seizures”, and I’m like “I’ve been watching you have seizures.” That whole process, I’m happy that we have trust. We have a very trusting marriage and a very loving marriage. And you were able to say “Okay, I don’t remember this thing. I didn’t have that experience, but I don’t think you would make up the fact that I’m having seizures.” And then we had to develop like our own way of showing you… verifying and validating. Because, to me, as a therapist, I’m like “Don’t just trust what I say! Let’s get some sort of system in place, so that you can know this for yourself, so that it can be your own truth.”
C: Yes.
K: And so, for me, it’s been really helpful to have you.
C: That’s really nice. Yeah. We’re a community of two.
K: (laughs) Yes, we are. So, the message of today’s cast is “fight for yourself. Advocate for yourself.” Don’t…
C: And recruit friends who will fight for you and advocate for you, too.
K: Yeah, build your tribe. Get a village. (laughs) So for me.
C: I’ll let you say that, I guess.
K: For me, Twitter allows us to have a village.
C: Yes, it does.
K: So I absolutely love Twitter. I think Twitter is an awesome place to meet people. Umm, and get like-minded individuals together and get support and understanding.
C: I agree. (K laughs)
K: Thanks for listening.
C: Bye bye.