S3E2: Dr. Ginevra Liptan

blue and purple/pink background with white text - Chronic Sex Podcast | Season 3, Episode 2 | Dr. Ginevra Liptan | Doctor & Fibro Badass

Content note: I briefly mention substance misuse, eating disorders, and abuse – skip 6 minutes in to avoid. Throughout our convo, we discuss suicide, sexism and ableism in healthcare, cannabis use, the opioid crisis, and use some ableist language.

Welcome to April! It was sunny and windy as all get out here in Wisconsin, so here’s to spring.

In this episode, I speak with author, doctor, and fibro friend Dr. Ginevra Liptan. Together, we talk about the pain of fibro, pain management, Frida Kahlo, and how to get Lady Gaga to fund an institute or organization to study fibro – #GagaForFibro?

Links from the episode

color painting of a latinx woman with long dark hair worn down and her spine showing through her naked torso as a long broken column — Kahlo’s The Broken Column (1944)

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Transcript

Welcome to the chronic sex podcast! Chronic sex talks about how self love, relationships, sex, and sexuality are all affected by chronic illness and disability. That’s not all though. We’ll also touch on intersectionality, social justice, empathy, current events, and much, much more. Given the range of subject matter, this podcast is not suitable for those under the age of 18 and unless you have headphones in, you probably shouldn’t be listening to us at work. My name’s Kirsten Schultz and I’m your host.

Kirsten: Happy April! Um, and yes, I am actually recording this this morning – hooray! I had a lot this weekend to do cause I, I’ve got a trip coming up this week and just preparing for that has really kind of slapped me in the face. Um, as far as a few updates going on this, this week. Um, Tuesday through Friday I will be in Dallas at the Beryl Institute’s patient experience conference. Um, I just joined their global patient advisory board and I’m really excited. Um, my college best friend lives there and have a couple of other friends that live there and I’m really excited. Just go and be there and enjoy the space. And learn and contribute. And um, the beryl institute is like world renown for putting patients at the forefront of things. So I’m really excited about that. It’s been a while since I really nerded out in a healthcare specific space and it’s, it’s nice.

Kirsten: It’s a nice thing. Um, the husband has a cold and I can’t tell if I’m starting to get it or if it’s just allergies cause my air quality thing keeps telling me the pollen is really terrible. So I apologize for the sound of my voice this morning. I’m really excited about today’s episode. Um, but just to continue with a couple updates, I picked up two jobs, very excited about that. Um, and I start both of them on the eighth. One is with a local organization that focuses on independent living and providing accessibility for fellow disabled peeps and doing advocacy and it’s really like stuff I already do, but here locally. So I’m really excited about that. And then second thing is writing for a healthcare organization that, um, is one of the biggest in the world and focuses on like addiction and substance misuse as well as, you know, eating disorders and other things where you might potentially be, um, within a rehab center. So yeah, I’m really excited about getting to do both of those. Um, it’ll be nice to go back to working 60 hour weeks. It’ll be nice for my paychecks. Um, and I’m also really excited about a lot of the other things I’ve started to do lately. As I just mentioned, being on the Beryl Institute’s patient advisory board. I also got on the one of the local healthcare organization’s equivalents. So I’m really excited about being able to help improve health care. Um, and like I said, without moving in healthcare specific spaces the last couple of years and taking some time off from those and then going to like these interviews to be on these boards or even for my jobs and share some of the things that I’ve done and see people be like, “oh shit.” It was a really nice feeling. Um, I think that with the #MeToo story that I had to tell that involved healthcare stuff, um, which I did a, an episode on a while ago, but I think it really just pushed me out of that space along with, um, you know, a creator of a certain theory involving utensils, uh, getting upset at me, writing a piece, praising her, and then, um, sicking her 12,000 followers on me. Yeah. That was, it was not my favorite. Um, and that’s what I’m going to say about that.

Kirsten: But anyway, I’m super excited. It’s going to be busy, busy, um, several months, but in the best way. And one of the ways my neuro divergent brain works the best is, um, when I have a lot of things to do, I manage my time really well and that pressure helps me work better. So I’m very excited about going back to that space because it’s been a little bit, um, since it is April. I do want to take a moment to remind people that autism speaks is a hate organization filled with eugenics related ideas. And instead of helping people live their best lives, um, with involved, they really back things like ABA therapy, which, um, is abuse. Like it’s straight up abuse. So don’t do the light it up blue, don’t do the fucking puzzle pieces. Um, I’ve got a piece on medium that I can link to here that talks all about all of the terrible things that autism speaks is involved in, including backing the site The Mighty, which is why I never share anything from them.

Kirsten: So keep that in mind this month. Okay. Now to today’s episode, I am speaking with Doctor Ginevra Liptan. She’s a graduate of Tufts University School of Medicine. She’s board certified in internal medicine and trained in functional medicine. She developed fibro when she was in medical school and kept it quiet from like people at the school because she saw how other doctors were reacting to it. Um, I think that’s a fairly common thing. Maybe not in medical school, but um, just in general, you’re training for something or you’re, you’re in school and you keep a diagnosis quiet because of how people around you are reacting to similar things. She’s really worked, um, as a fibro patient herself to find treatments that are helpful, um, that, you know, Western medicine may not have looked at or that other medicine might not have looked at. And she’s just a fantastic person. She runs a place called the Frida Center for Fibromyalgia in Portland, Oregon – and that’s a nod to Frida Kahlo and we’ll talk about her a bit in the episode, but it seems like looking back at her life, she likely had fibromyalgia partially as a result of a major accident that she was in. That was just horrific. Um, like I don’t know how she survived at. Terrific. I’ll put a link in the shownotes for that too in case you are unaware. Anyway, Ginevra is just a fantastic person. We crossed paths at the Women in Pain Conference in 2016 and we’ll talk a bit about that. And I just adore her with all my heart. And she’s got a couple pieces on her site right now that talk about sex with fibromyalgia and the difficulties surrounding that. So I’ll put those in the show notes as well. So please go take a look at that. And without further ado, since it’s been nine minutes of me Yakking your ear off, here is my conversation with Dr Ginevra lifted. Please note really quick though, um, there’s a couple points where her audio cuts out because Skype, I will do my best in the transcription to make sure that it is easy to tell what she was saying. So if you, if you can’t figure it out from context clues, take a look at the transcription and that will help. All right, now really without further ado, here’s my conversation with Dr. Ginevra Liptan, the badass.

Kirsten: Hello Ginevra it’s so wonderful to speak with you.

Kirsten: It’s wonderful to speak with you. Thanks for having me here.

Kirsten: Of course. Thank you for being here. I’m really excited to have you on and talk more about the cool things that you’re doing. And um, yeah, do you mind giving people like a tiny little synopsis of like your entire life and you know, all the cool stuff you do,

Kirsten: Let’s see – all the cool stuff I do. Um, well I’m a doctor, I do, uh, integrative kind of style of medicine and I focus on fibromyalgia and I focus on that because I developed it myself in medical school and that sent me off on a whole journey of discovery to try and figure out what was going on in my body and what I could do to help. And uh, I did not get a lot of help from medical professionals, so I’m trying to kind of be the opposite of the kind of doctors that I was on the receiving end when I was in medical school.

Kirsten: Yeah, that’s, it’s so important and I think patients can talk about how important it is till we’re blue in the face. Right. But it’s really refreshing to have someone who’s both a patient and a provider go like, no, this is messed up.

Kirsten: Which is, I feel like that is my role. Like I can almost translate between the two worlds because doctors or health care providers aren’t, they would have a really hard time hearing things that aren’t from other healthcare providers. So I feel like I can sort of translate between the, the worlds both. So that doctors can better understand what the actual experience of patients is like and then vice versa. So I can kind of translate what the science and what doctors are talking about into like doable action plan items that patients can maybe do for themselves. Um, so yeah, I’m kind of trying to live in both worlds there.

Kirsten: Yeah. And I was, um, reading through your book, The Fibro Manual. And first of all, thank you for writing this book. It’s so needed and so important. Um, I really love how the tone of it is somehow both from a place of authority but not like in a cocky way and like very relatable. And I just, I really feel like this is a book that only you could have written and you know, especially at the end where you have kind of this doctor to doctor speak and resources for other healthcare providers on treating fibromyalgia and, and taking care of patients. It’s just fantastic.

Kirsten: Thank you so much. I, I tried, I will say that it was a very, uh, kind of nerve wracking proposition to write, to write the book. You know, it’s very easy to talk about the medicine part of things, but actually talking about my own experience and putting myself out there in the world and that way felt so vulnerable and I still feel it’s really hard to talk about my story and I, you know, it’s much easier to just sort of be like a medical professional at the Mayo Clinic giving you advice. But like when you’re actually talking about what is happening in your own body and your own personal experience, you know, I often will start out giving a talk and then all in the middle of it start talking about my experience and then start crying and I’m like, darn it. Start crying again.

Kirsten: Who’s cutting onions in here? Stop.

Kirsten: I’m always like, don’t cry. Don’t, oh, there I go. But I can’t, you know, it’s so close to home. Right. So thank you. I’m glad that the tone -I’m glad that you liked it. Thank you.

Kirsten: Yeah, it’s so great. And it’s been sitting on my bookshelf for ages.

Kirsten: Well, and finally you, you had an excuse to read it.

Kirsten: I did. It’s, um, it’s been a nice push back into reading more things. So good.

Kirsten: Well I’m happy to help. I’m happy to help.

Kirsten: You’re just helping people all over you. So, um, and feel free to say you’re not ready to talk about this at the moment or or whatnot, but um,

Ginevra: talk about sex?

Kirsten: Yeah, I feel like I should play that Salt N Peppa song, which ironically was my favorite song when I was like six.

Ginevra: I bet you were a very cool six year old.

Kirsten: I mean I’m not going to brag, but like –

Ginevra: You were!

Kirsten: I was kind of cool. Um, you have gotten, uh, a couple of pieces up on your site right now. The talk about the interactions between fibromyalgia and sexuality and the Act of sex itself. Um, what kind of spurred you to write those?

Ginevra: Well, I wish I had talked about it in the book and I sort of wimped out and didn’t really address sexual, like the sexual dysfunction that can come along with chronic illness and fibromyalgia in particular. And then that’s sort of been gnawing at my soul because patients ask me about it all the time. It is a top of mind issue. I mean it really, it really is. And it’s something that’s embarrassing for people to talk about. They have to work up a lot of courage to say, Hey, you know, I don’t, I don’t want to have sex with my husband anymore because it hurts and it’s really destroying my marriage. What can I do? And, and I felt like I couldn’t do it justice, um, in the, in the brief kind of patient interaction that I had with folks. Plus I also knew that if my patients were asking it, lots of people had the same question.

Ginevra: And so I had to kind of pull up my – you know, pull up my big girl pants and say, ‘okay, I’m going to write about this and I’m going to talk about what like the actual issues are for folks.’ And I wanted to both talk about it from a medical side and also more from kind of the personal experience. Um, and that, that’s the piece where I, I sort of, it’s challenging to know how much to like put out on the Internet, you know, like as a doctor. Do I want to be talking about in my personal sex life? Here are the challenges that I had, but of, of course, the reality is I have fibromyalgia. I developed it in medical school. I was married at the time and intercourse became really painful for me and I stopped wanting it and it really contributed to the ending of my marriage.

Ginevra: I mean, there’s not, there’s not any other way to kind of go about it, but I haven’t, I haven’t talked about it very much. Um, and I realized that it was time, it was kind of time to change that because if I’m ashamed to talk about it as a doctor, I can’t help people. And so I needed to, to sort of get over that component. So the notes that I’ve been writing down over the years, oh, well, but I pulled together into the three different blog posts. Um, the first was about kind of dealing with the fatigue and low libido that comes along or can come along with fibromyalgia. And in reality, if you’re super fatigued and you get them bed, the last thing you really want to do, you just want to sleep. You know what I mean? There’s no other bedroom activities that appeal.

Ginevra: So trying to kind of address ways around that, ways to treat medically the fatigue and libido issues, but then also deal with the emotional component of it. Um, and kind of trying to find some work arounds for that. Finding other ways to be intimate that aren’t maybe, um, intercourse based, um, if that’s painful for folks. So that was, that was kind of the inspiration. And then I wanted to talk also about oxytocin and some other kind of experimental treatments. I don’t know how much you know about oxytocin, but it can really help to both kind of increase the quality of orgasm and also can increase libido for folks that are not having, having much libido.

Kirsten: Yeah, it’s, it, it’s a really fascinating chemical, I think. I was thinking about this yesterday actually, funny enough because it was my nephew’s birthday and I wasn’t there for when he was born, but when my niece was born and, and when they were inducing my sister, basically what they gave her, it was like a big dose of Oxytocin. And I was like, wait…

Ginevra: Yes, exactly. Like in mega doses, it will totally, totally start the process of labor.

Kirsten: It, I think it’s one of those things we don’t talk about enough. And when we talk about it, right, this beautiful little chemical, we talk about it in euphemisms or we talk about it like, ‘Oh, you make me feel fuzzy like chocolate makes me feel fuzzy.’ Like, you know, we don’t actually name it and that’s one of the disservices that we do to ourselves as a society is by not talking about it. And by not using the proper language, nobody’s getting to the bottom of everything that this chemical can do, the benefits it can have. Um, or even the, the role it plays in our everyday lives.

Ginevra: I completely agree. And I think, you know, as I did more research on Oxytocin, I was like, why aren’t we, why don’t, why don’t we talk more about this? This chemical was kind of amazing, you know, like, it has a really fascinating effect on the brain. And I don’t know why we always speak euphemistically, like we call it the love hormone or the snuggle hormone. And I don’t, why, why not just call it what it is. I agree.

Kirsten: Yeah. It’s, it’s Kinda like when I see people call their vagina there, no, no zone. I know, I get it. You know, if we’ve been raised in certain situations, if we’ve gone through things like sometimes the words themselves are really difficult to say, but… They’re your genitals.

Ginevra: Okay. So, so I, I have a daughter and um, as, uh, as both the doctor and a feminist and like a pro using the right words for things, um, I, we never used any words, you know, like pee pee or, you know, it was all like a vulva and vagina. And I remember she was like two years old. We were at the park and my husband picked her up and she was, you know, sitting in on top of the back of his neck and, and she screamed out in the middle of the park, like “daddy, my vulva hurts.” And I was like, that’s my girl. She’s using the proper noun. Yes. Okay. It was hilarious. It was like one of the funniest things and it was awesome. I was like, that’s good. Mission accomplished.

Kirsten: That’s – I wish you coul see – I have like the biggest smile on my face right now. Just when I think I couldn’t adore you more?

Ginevra: Well I think we are like minded. I will say that when I, when I saw you at that, a women in pain conference, I was like, who is this person? She is – you have so much bravery and you were on a panel. I think it was you. And I think there are some physicians on the panel. I can’t remember who it was – like, yeah,

Kirsten: Like a psych.

Ginevra: Yeah, like a psychiatrist or psychologist and then a few other folks and you, and I was just blown away. I was like, who is this person? Wow. And you, you were so – everybody else was sort of skirting around the issue and not wanting to say, you know, kind of talking about it euphemistically and, and you said something like, you know, we just need to talk about sex and the fact that it can be really challenging when you’re dealing with chronic illness and you just had this very forthrightness. And I was like, mhm, yes.

Kirsten: That makes me so happy. That was the first panel I’d been on that the other people were like strictly patients. And so to go from having left my day job a couple months before working for physicians to sitting between like healthcare providery types and like holding my own.. I’m gonna sit up a little taller, right now.

Ginevra: You totally should. I – you just killed it at man. So I remember writing your name down. I’m like, okay, once I have the courage to talk about this, I’m gonna, I want to connect with her because you, you have a really important and beautiful message and the work that you’re doing is amazing. Like you really, you should be sitting up tall.

Kirsten: Someone asked me, I think it was, um, uh, on for an upcoming episode of the podcast Fat Chicks On Top, which I love –

Ginevra: um, that, that sounds amazing.

Kirsten: Yeah. They, um, asked me like, what my favorite thing I’ve done recently was – either that or it was like in a job interview recently – and I like thought about all of the interesting things that I’ve been involved in and I went, uh, I can’t choose just one. Like, uh, you know, getting my house representative to sponsor a bill was pretty cool. And like talking to him about how painful arthritis is and that arthritis types can be painful. Like that was cool. Um, I mean, not the subject matter, but like –

Ginevra: Right, the fact that you were able to just – like, good for you,.

Kirsten: But like that was back in 2014 and now all the things I’ve done since then. I’m like, oh, okay.

Ginevra: Uh, you’ve been really busy.

Kirsten: Little bit, little bit – but you have too!

Ginevra: I have a little bit, I will say writing a book, a lot of work, lot of work – might have underestimated how much work that was.

Kirsten: That’s good for me to know.

Ginevra: It’s a lot of work. And then I, you know, running a practice, a lot of work and then what I think is the biggest, the most challenging thing and the thing that takes the most of my kind of psychic energy is the fact that I feel like I’m having a fight against mainstream medicine. You know, I, it’s like this uphill battle where I’m trying to get them, get other doctors to understand what, what being in chronic pain as like what the reality of the healthcare system, how the healthcare system right now treats people in chronic pain, I think were really mistreated – almost sometimes criminally. So, um, my favorite thing that I did recently was go down and testify before the, our state legislature. I don’t know if you’re familiar with what they’re trying to do here in Oregon with Medicaid. So the state run government, um, insurance is, they have a proposal where they’re going to mandate opioid tapers for anybody with chronic pain. They’re only going to let, let it be for acute pain. So everybody with fibromyalgia, everybody was chronic arthritis pain, no matter what, across the board, mandating a taper – we’d be be the first state in the nation to do it and it would be an absolute disaster. And I think, I think we’d have a huge, huge bump in suicide rates. And I will tell you testifying – that was another time where I, in my three minutes managed to start crying.

Kirsten: I mean, I think that’s pretty appropriate place to do it.

Ginevra: Oh Gosh. It was so embarrassing. But you know what, like I, it, it’s something I’m really passionate about and I, what I said to them is, I really feel like if, if you pass this into law, I will lose 10% of my patients to suicide. Like you can’t, you can’t do that. You just, you cannot do that to a provider and you can’t do that to human beings. Um, it’s anyway, so there’s so much kind of advocacy work that I’m trying work on, but that’s so exhausting. Like really it’s so it takes, I don’t know how you, it takes so much or at least for me, it takes so much psychic energy to really kind of put myself out there and then to put myself out there against other doctors. I mean it was all doctors basically that I was testifying to. I was just like, oh my gosh, I can’t believe I’m doing this, but I had to do it. If I don’t do, I was the only doctor that spoke out. It was me and like 12 patients giving testimony. So I feel like it’s my duty. I have to be that doctor that speaks up because who else is going to, you know?

Kirsten: Yeah, absolutely. Um, I think I first learned about that a couple of years ago when they were first starting to talk about it. One, it’s wild to me that it’s taken like a year and a half to two years for them to really get to this point of, of having people openly like testify against it. But then two, I just don’t understand with, with all of the features that have been written lately about, ‘hey, y’all are forgetting chronic pain patients and even the push back, was it the last week against Kirsten Gillibrand? Um, and, and how she’s actually like sat down with some of my friends and like talked through some of this, which like

Ginevra: Has she??

Kirsten: Yeah, like her people not like her, her, but

Ginevra: That still – that counts.

Kirsten: Right? Um, Matthew Cortland is a, is a pretty well known disability activist and lawyer on Twitter and he shared about meeting with, with her people and um, so did Rebecca Cokley who um, used to work in the Obama administration and, and does a lot around accessibility and stuff. Um, but yeah, they went and sat and talked and we were like, “Hey, no, this is bad. Don’t.”

Ginevra: This is a horrible idea. I’m so glad that there’s, there’s people advocating out there for us. And it’s so hard because there’s so many fibromyalgia patients out there that want to do advocacy and, and have strong feelings about things, but there are too flattened by their disease to be out there marching, you know, like or to do, to do much advocacy. So the way I look at it as, um, you know, I’m, I’m trying to help as many people as I can to feel better than they are now so that they can stand up and fight for themselves or for their rights or for, you know, when you’re flattened with pain or fatigue or both, you can’t really be out there speaking up for yourself or trying to make changes in our very broken healthcare system. So that’s part of why I think it’s taken so long for kind of the pain patients voice to be heard. It’s just cause we, we as a population don’t have, they don’t have, some of the organizations are funding. It’s all kind of grassroots efforts and it’s all mostly patients kind of advocating. I mean, everybody that testified in Salem, um, last week with me, it was, you know, there of their own accord and there was a lot more people that wanted to go but couldn’t because they didn’t feel up to it that day. So kind of feel like those of us that do feel better have a duty to kind of help help people who are a little bit maybe not, not feeling as well, um, or maybe on good days trying to do more. I don’t know. It’s really, it’s a really hard situation.

Speaker 6: It is. It’s, I think it’s also fascinating because I mean, just in the last five to 10 years or so, we’ve finally gotten more concrete proof that things like fibromyalgia exist. And so a lot of physicians or other healthcare providers who kind of Poo pooed the idea of fibro being a real condition. Like there’s still, you know, providers practicing with that mentality and with the paternalistic view, but also, especially like the idea that especially like women in pain are hysterical. Oh.

Ginevra: And the things, some of the things patients tell me from their experiences, what I, with what I call it, dinosaur doctors, you know, dinosaur thinking like I, there are still doctors out there that say fibromyalgia isn’t real. It’s all in your head. If you just lost weight, it’s just cause you’re depressed. It’s just cause of this and I, I really see it, I think fibromyalgia, we would be 50 years ahead of where we are now in our understanding if it was uh, not an illness that primarily affected women. Like I think that, you know, it took us 50 years for medical professionals to be like, oh it’s real. When they were saying that they heard when all those women were saying that they hurt. Oh, okay. Like it shouldn’t have taken 50 years for that realization.

Kirsten: No, it shouldn’t have. Then we’ve got how many patients in the meantime dealing with fibromyalgia or chronic fatigue syndrome or a number of conditions that are really misunderstood or have horrible things said about that in media or you know, just don’t get it.

Ginevra: Fibro is more accepted. It absolutely is. And you’re right, it is just in about the past 10 years that it’s become more accepted. But I still call it the f word of medicine because I’m telling you, if I go into like a crowded room of doctors and yell, Fibromyalgia, people will be running for the hills because they are afraid. They don’t, they don’t understand. It feels overwhelming. It feels they feel helpless. You know, they feel frustrated by it. It’s not something that we have great tools, least in western medicine to help. So, you know, as I went through my training, I could kind of see more and more why doctors were so frustrated, you know, you don’t have a lot of tools and you don’t have a lot of time and you need both of those to help people with fibromyalgia. So I can, I can sort of understand it from a physician perspective, but also as a patient, it hurts so much that rejection or that dismissal. I mean, I have patients that seriously have posttraumatic stress disorder from their doctors. Like they get PTSD symptoms triggered when they go into a doctor’s office. Like, how crazy is that, that their actual doctor. I sort of like continue the, the traumatization, you know, that just like blows my mind. But it’s really, it really does happen. Um, it’s brutal. It can be really brutal.

Speaker 6: Yeah. Cause it, it either forces you to be in a position where you’re constantly going through that fight, flight fight or freeze response. Right. Which just aggravates fibro symptoms to the right. Yes, totally. Or you’re just not even attempting to get care because you’re not at the point where you can do that.

Ginevra: Well, or you just kind of give up. I mean I have patients that are just like, you know, I haven’t even tried to see doctor in 10 years cause I just, I know they’re not gonna be able to help me. Like, ah, it’s just heartbreaking. You know, like we’ve really done something wrong. We really, really failed when it comes to fibromyalgia and I think chronic pain care in this country, like I think it is a big fat failure.

Kirsten: Yeah. Agreed. It’s, it’s bad.

Ginevra: It is. And the opioid crisis that, you know, the, the, the way I look at it as opioids are imperfect tools to manage pain. But for some people that’s the only tool they have. So until we have better tools, isn’t an imperfect tool better than no tool, you know, it doesn’t just doesn’t make sense to me the way she seems very wrongheaded.

Kirsten: No. Yeah, absolutely. Like I have friends who can’t be on nonsteroidal anti inflammatory meds because of counter indications or you know, a history of ulcers or a number of other things. Right. So then like what do they do, right? Like

Ginevra: What’s your – and then they, they can’t be on cannabis legally, usually because you know, x, Y, and z. So then what are you, yeah, what are your options? Opioids – that’s your options.

Kirsten: And I think it’s such a shame too, because, you know, going into kind of talking about cannabis, right? As someone who has fibro too, like I have found, um, very low doses of like high CBD, low THC cannabis stuff to be almost like a vacation for me from pain.

Ginevra: Yes. like right there – That is like almost a perfect, um, kind of fibro cannabis recommendation. Like high CBD, low THC. It can be particularly like at night, it can be so good for improving sleep quality. I think cannabis is a much better medicine overall for fibromyalgia compared to like if people get opioids. But the, the challenge is the legal, the legal ramifications around it are just a mess. And I had a, I had a patient that ended up losing her job because she had a drug screen that tested positive even though she had a medical card that said she could, you know, I’d written a or saying medically she needed to use this. Um, and she, she lost her job because of the urine drug screen loud, you know, when that risk is there, of course people are gonna choose opioids. So I, I also feel like it can provide a nice, a nice break from pain. And other trick that I like people to try is to use topical cannabis like balms or salves that have some THC or CBD and THC because THC actually is, it works really well topically. I don’t know if you’ve ever tried it topically, but it absorbs nicely, right into your tissue and particularly into the Fascia, the connective tissue around the muscles, which is really the area that hurts in fibromyalgia. So for people that don’t want the mind altering effects of THC, but they want the pain relieving benefits, I tell them to go to a dispensary, get as strong a salve as they can, and lather it on themselves. And that can be amazing. Really, really amazing. So it’s also helpful for somebody that’s maybe worried about trying cannabis. Some patients that are like, you know what, I’m 75 years old. I don’t want to take cannabis. Like what can I do? I’m like, well, you don’t have to take, but you need to rub it on yourself. So it’s like a good way to like introduce, you know, into the, into you. Um, I’ve also heard of some, you probably know all about these, but like cannabis infused loops that I think, um, one of my patients really found reduced her pain with intercourse and she said, I said, well, what does that feel like? And just say, well, it kind of feels like my vagina’s high. And I was like, Huh, I need more specifics because I don’t have a frame of reference for that. So can you explain? She’s like, well, I felt I felt some pain relief, but also felt like it kind of increased her, um, pleasure sensations and I was like, okay, I think this could be a, so that’s something that, I mean particularly for having painful intercourse, I’m like, try, you know, try it if you’re able to access it. Have you had any, I mean, I know you’re probably much more knowledgeable about all the various lubricants out there in the market, but have you tried any of the cannabis based ones? So

Kirsten: I haven’t tried any that have the THC in them. Um, I have tried a CBD infused lube and they had to take it off the market because they need to reformulate it because they found out it was breaking condoms. Um, it’s from Good Clean Love, which I think is actually in Eugene.

Ginevra: Oh, yeah. Yeah.

Kirsten: So I’ll have to keep you in the loop when I see it come back up. Um, because that was on its own, very helpful. Um, from, from like texture standpoint, it was a little sticky.

Ginevra: Yeah. So maybe they need to reformulate the, yeah. So CBD on its own and be can be helpful. Um, I have a CBD muscle balm and I saw, because, uh, I’ve found it’s nice to have something that has no teach seen it because then you don’t have, you know, you can take it on a plane or don’t have to worry about it and it can give some pain relief really from muscle relaxation. And that would make sense to me from a painful intercourse standpoint that if you can kind of relax some of those muscles at the vaginal entrance there that it would have, you’d have less pain with intercourse. So maybe CBD helps on its own. I, I didn’t, I didn’t know that exists.

Kirsten: Yeah. That’s the only one that I’ve found, although I haven’t like gone in and done super searching. Um, but there is another sex educator called Ashley Manta, m a n t a and um, she does a lot around talking about weed. And so she’s, um, talked a lot about THC infused lubes and things like that. Um, so she would be a good go-to source.

Ginevra: Yes. Thank you. And next time you’re out in Oregon, which you should definitely come out. Um, we have some amazing dispensary’s that I’m sure have like 20 different lubes. You could, we could go on a little field trip.

Kirsten: Oh, man, I love it. Um, I definitely need to come visit because my sister lives in Eugene, so yes,

Ginevra: you do. Yes. You do.

Kirsten: Come Back and visit my old stomping ground.

Ginevra: Yes, for sure. Get out of Wisconsin for a little while.

Kirsten: Yeah. But things are getting there. Here. We just got a new governor and his thing with his budget is that he wants to push for at the very least, um, medical marijuana finally, now that every other state around us has it and, and really push forward and like he’s created a brand new health inequity council and really great things that are happening. So knock on wood,

Ginevra: Seems like you’re going to end up on that health inequity council.

Kirsten: Um, I did send my information and the other day while I was getting my oil changed

Ginevra: I can totally see how that would need you. That’s fantastic.

Kirsten: Yup. I sent them my master’s capstone about patient engagement too.

Ginevra: Yes. Yes. Perfect. I mean, that’s perfect. So yes, you need to stay in Wisconsin and help, help, help Wisconsin rise. Rise. Yup. Let’s go down and see all the, we have such an amazing, like we have, I heard a statistic that we have in Oregon. We have more dispensaries than we do Starbucks and we have a lot of Starbucks, like a whole lot of Starbucks. So yeah.

Kirsten: And a lot of Dutch brothers, which I miss terribly.

Ginevra: Yes. Dutch brothers. Yes. And that it’s not like I’m a Starbucks fan, but seriously, if you look at how many we have and then think about how many dispensaries that means we have, we are, we are kind of the Mecca. Yes. It’s true. Also, Colorado. But I think we’re best.

Kirsten: Well, yeah. And I’m probably biased, right. Uh, having grown up there. Yeah.

Ginevra: When did you, when did you leave?

Kirsten: Oh yeah, so I um, I lived in Eugene from like 1993. I was like five to 2006 and then I moved out here.

Ginevra: Oh, okay. Yeah. I had forgotten that you were at how, or maybe I didn’t know that you’d had such west coast roots.

Speaker 6: Oh yeah. Yeah, it was, um, I was born in Reno and then we moved to Eugene cause like my whole extended family lives within about an hour’s drive.

Ginevra: Got It. Yeah.

Kirsten: Well a couple that are like six hours now, but at the time they were within an hour’s drive.

Ginevra: But now you’re, now you’re far away.

Kirsten: But now I’m like a 42 hour drive.

Ginevra: Yes. Yes. That’s so good to come out to Portland and we’ll have some dispensary adventures. Um, you know, before I started recommending marijuana to patients, I was like, I need to know what, what I’m sending people because you know, you have to go in to a dispensary to fulfill your card. And, um, I had this like very weird period of my life a few years ago where I go to as many dispensaries around Portland. And I was like, you know, this is just not what I thought I’d be spending my life doing as a doctor, but I wanted to find the ones that were good so I can recommend it to folks. And then, and then it became really clear to me like, oh yeah, there’s some that are really more oriented for the recreational consumer. And so they’re really more medical. And like my baby boomer patients, they’re going to feel more comfortable. Um, cause, you know, honestly, I think people kind of want it to feel like a pharmacy. Like, I don’t want to feel like I’m going to Frat House with, um, Bob Marley posters and bongs, you know, like, let’s use medical terminology. Let’s not name things Rainbow Obama, Kush, Unicorn and you know, like, let’s call it it relaxation number one, or I don’t know, like, does it, does it not, I mean, is it just me or does that not feel very medical?

Kirsten: No, you’re, I think you’re absolutely right. Um, I know the one that I went to when I was in Portland was much more skewed towards the medical and that was definitely something I was looking for. So yes.

Ginevra: Yes. I mean I think we’ll get there. I think we’ll get there, but, um, it is a, it is a slow process, although as people are getting, as opioids become harder to access for chronic pain, I do think that more and more people that maybe wouldn’t have considered cannabis before are now maybe willing to consider it. So maybe things will start to like maybe that will speed up things happening as far as in Wisconsin and, and things getting more approved, um, for medical purposes if more. The only option for people. Um, I mean ultimately the pharmaceutical companies are going to get in on it. I, they’re falling all over themselves to find a cannabis based, um, pain medication right now. So I think that will probably happen within the next five or 10 years as well.

Kirsten: Oh yeah, I can definitely see that happening.

Ginevra: Yeah. And you know, went where that’s where the money’s going. So, unfortunately it’s not like they’re spending a lot of money on, on researching it before. Like for example quality studies looking at like what types of cannabis help with fibromyalgia pain, is it most more effective if you vape it versus use a tincture versus – you know, like we actually need to differentiate all that. But right now it’s just anecdotal and people just kind of learning from each other or maybe on on social media or things like that. And I’m, I’m my inner scientist is always like, no, come on, let’s just go studies guys. And I’m like, who has $10 million to do a study? Nope, not me. So just in case you might be somebody that actually would know her, I’m like on a mission to get Lady Gaga who has fibromyalgia to fund like fibromyalgia research institute. They got us research institute for fibromyalgia. So you’re way more likely to like run into her one day than I am. So just keep me in mind when you run into her.

Kirsten: I can do that. I can definitely do that.

Ginevra: Because don’t we need – we need somebody that’s like a celebrity, like we need what um, Michael J. Fox did for Parkinson’s. You know, somebody that, I mean I’m sure she doesn’t want to be a spokesperson, spokeswoman for Fibromyalgia, but she’s kind of normalized that I think. And um, one of my patients said it’s so great cause now my 13 year old daughter thinks it’s really cool. I have fibromyalgia because lady Gaga has it. And I was like, yeah, I guess that’s okay. Yeah, having fibromyalgia is cool now. Thank you lady Gaga.

Kirsten: Hey, I’ll take as many commonalities with lady Gaga as I can get!

Ginevra: Me too. I was like, Oh yeah. So my mission is to someday be like, hey let’s fund dome studies.

Kirsten: I’m going to think of a Hashtag so that when I put up this episode, –

Ginevra: Yes, if you can think of a good hashtag and like lady Gaga for FM. I suck at making hash tags. It is not, it’s, I don’t know if it’s like a generational thing, but I’ve just like missed that.

Kirsten: Oh it’s so hard and tricky. It is.

Kirsten: It is. So yeah, please think of a good lady Gaga or fibromyalgia Hashtag and we’ll get her eventually, I think.

Kirsten: I mean, she’s got more money than other countries.

Kirsten: Or like the state of Oregon, she and now she’s an academy award winner. So I’m, I, I think, I hope that one day we can really do, I mean, there’s a really big gap right now. There’s no drug companies funding studies for fibromyalgia. So there’s very, very little research being funded. Um, ever since the recession, the government’s not really funding much research for anything, let alone fibromyalgia. So I have a friend that’s a fibromyalgia researcher and she said, you know, 10 years ago she was managing a budget of like, you know, $10 million and now she’s managing blood and have like $10,000. That’s how much things have dropped as far as fibromyalgia funding. And she’s had to branch into studying other things just because there’s no, there’s no money there, you know?

Kirsten: That’s so bad.

Ginevra: Isn’t that? I am really sorry. It’s kind of depressing. We should, let’s look, think something happier.

Kirsten: Um, I could ask you some fun questions.

Ginevra: Ask me some questions. Okay, sounds good.

Kirsten: Okay. Yes. So the first one is what is your favorite curse word? Or like it could be a stand in curse word. Like if you literally like to be like, ah, curses. I mean I might call you a Batman Villain, but like that’s all

Ginevra: I wish that I use stand-in curses, but I do not, I swear like a sailor and my daughter’s taken after me. Well fuck is my favorite curse word. But I particularly enjoy it when it’s used in statements like, well, fuck a duck. And I say that because when I was four years old, my mom was on the phone with one of her friends and I heard her scream fuck a duck. And I remember being like, and it was so high she went from being like my mom to being like this bad ass woman. I was like, who is this person that can just like yell that out? And now she has, I’m not kidding. She has that saying embroidered on like a pillow in her living room. And my mom’s pretty awesome.

Kirsten: Um, can y’all adopt me?

Ginevra: I mean come on. You fit right in. So I really enjoy, I enjoy that. Like I enjoyed the rhyming and I enjoy the like sort of shock shock cause who thinks of fucking a duck? You don’t think of it. But once you, once you’ve heard it, it’s hard to not think about it. That’s all I’m saying.

Kirsten: Yeah, it’s a, it’s an interesting visual, especially if your major reference for ducks is Puddles The Duck. Happy, smiling face.

Ginevra: Interesting one. Yup. You’re welcome.

Kirsten: I love it. Oh my God. Um, and for people who don’t know who puddles the duck is, is the mascot for the University of Oregon. You’ve all seen him with his cute little ascot. He’s like my favorite.

Ginevra: He does have an ascot, doesn’t he?

Kirsten: Yes.

Ginevra: Yes he is awesome.

Kirsten: He is.

Ginevra: We are into our Ducks here.

Kirsten: I just, I grew up in the age of Joey Harrington being on the ducks team. So it was like big deal.

Ginevra: Uh Huh.

Kirsten: Cause he almost won the Heisman. So like

Ginevra: I think it’s been, we haven’t had a big deal team since then. Really?

Kirsten: Not really. I mean for maybe for a little while, but like, like in 2011, I think the ducks beat the Wisconsin badgers at the Rose Bowl. I was the only person wearing ducks gear.

Ginevra: You are very brave. Were they throwing beer at you?

Kirsten: People were like, so, so it was on in the break room at work and um, I was on my break and watch the end of it and people just glared at me for the rest of the day.

Ginevra: You’re like, I did not personally be your team. That’s awesome. Way to go. Way to stand out for your roots.

Kirsten: I had the, I have a puddles hat, you know, I’ve got to represent.

Ginevra: Now I know what to get you for Christmas – more Puddles paraphernalia.

Kirsten: I mean, yeah. And I can send you badger stuff.

Ginevra: Hey, that would be fantastic. I did not even know that there was badgers were thing. Sorry. I know.

Kirsten: It’s totally fine. I mean, they’re cute.

Ginevra: Badgers are cute.

Kirsten: Yeah. And it’s, it’s fun cause, um, so it’s puddles the duck. And then Bucky Badger, and the Badgers – the women’s hockey team actually just won the NCAA tournament.

Ginevra: Oh, that’s awesome. Oh Man. They are something that, wow.

Kirsten: I have no words.

Ginevra: There’s something amazing. So we have roller Derby in Portland and those women are my heroes. There’s such bad asses. They’re so cool.

Kirsten: I know. They really are.

Ginevra: So I thought about doing it briefly and then I was like, hmm. FIBROMYALGIA – Roller Derby. I’m thinking that is not a marriage made in heaven, but my inner spirit is that of a roller derby girl. So you know, I’m with them.

Kirsten: I feel you so hard on that. It’s like we’re twins.

Ginevra: We are seriously. We need to like meet up again next time you’re on the west coast. Or I’m in Wisconsin. Well you travel around because you’re always like, every time I like see you, you’re like, now, I’m at this conference. Oh Wow.

Kirsten: I do. I do. And you know, hopefully, hopefully, knock on wood, I can come visit soon.

Ginevra: That would be so awesome. You’re so much fun. And the work that you do is so important. And, um, I, I think that you are wonderful.

Kirsten: I can’t even begin to articulate how important the work you’re doing. And if we talked about earlier, like bridging that gap between provider and patient and you even all the work that you do, talking about Frida Kahlo and her experience with fibro and just,

Ginevra: She is my ultimate badass woman hero – heroine. I mean, she, she really inspires me so much, um, because you know, she was in a really pretty horrible pain much of her life, but she did not let that stop her. She like took the art world by storm. She went to her last gallery showing like she was carried in on her bed. Isn’t that just the most fabulous? Just like, like a goddess. She was carried and because, you know, so I tried, I named my clinic the Frida Center because I was trying to find that kind of commonality of inspiration that that could unite people dealing with chronic pain and particularly women in chronic pain. You know, not, I can’t, I can’t, I wish I could cure for fibromyalgia, but I haven’t figured out a way to do that yet. But if I can both help people to reduce their symptoms and also to live better, bigger, happier lives. Like that to me is a, is a win, you know, so Frida was a natural choice for that. And, and we do think that, um, based on her art and her journals, that, uh, in hindsight that she did have fibromyalgia.

Kirsten: I mean, it absolutely makes sense, especially when you think about that horrible accident.

Ginevra: Yes. Yes. And if you see, there’s one of her, um, painting, she’s got these called the broken column and she draws all these nails on herself and the nails are actually in many of the same points that we use to, um, the tender point we use to diagnose fibromyalgia. So she actually was like, I know, it’s amazing to look at. Look at that. Like Google it – broken column Frida Kahlo – and it’s just like, ah, oh my God. It’s like a visual description. It’s the best representation of fibromyalgia. I think that one could, you know, I think just that one, you know, picture thousand words. Um, so sh she like nailed it and that was what, sixty years ago. So that’s why she’s my hero. And then all of a sudden she became like super popular. I don’t know. It was weird. Like now she’s like everywhere, but it’s so interesting.

Kirsten: People don’t know about like her chronic pain or – even when things come out about her being like bisexual or maybe not monogamous, people are like, Whoa,

Ginevra: I’m like, are you kidding? Like she was, that was, she was fearless. I mean she lived how she wanted to live, you know?

Kirsten: Absolutely. And now I’m just wishing we were both in Brooklyn because a bunch of her,

Ginevra: um, like her, some of her clothes and like how much I want to go to that. Like it’s, it ends like on May 10th or something and I’ve been like trying to figure out my schedule. Like how can I get to Brooklyn for like two days because I want us to do that. I want to like make the pilgrimage, but alas, I’ll have to wait till they, hopefully it tours around. It was in London before, so maybe at all go to see it like Chicago, Chicago. That would be really, that’d be good.

Kirsten: Really good – Yeah.

Ginevra: So are you a fellow Frida Fan?

Kirsten: I am. I think I, I hadn’t really understood so much about her living in chronic pain and stuff until the woman in pain conference and watching you talk more about her life and, and you know how she inspires you. And it was just a really great jumping off point for me as someone who likes to do research to like dive into, you know, more stuff about her life and um, it seems like every like six weeks, something new is coming out. Um, and, and shedding new light about the kind of life she lived and the kind of person she was. And it all just keeps coming back to like reaffirming her is a bad ass.

Ginevra: Yes. Bad Ass she is, and I don’t know if you remember, but when I gave that talk at the Women in Pain conference about Frida and how much she inspired me, did I start crying in the middle of it? Yes. I did, yes.

Kirsten: You did. It’s okay. I was also crying, but it’s okay.

Ginevra: It’s- so crying in public is so embarrassing, but at the same time, whatever, I just got to get over myself.

Kirsten: Like, I mean, you got to let yourself feel your feels.

Ginevra: Yes, exactly, feel my feels. Um, I think, I think Frida would approve. She would be like, yeah, cry, cry if you want to laugh. If you want to do both, do both at the same time while having sex, whatever you want just to do it. I mean, maybe not on stage. That might be the weird, but you know, be open.

Kirsten: Oh my goodness. I could talk to you forever.

Ginevra: We’ll have to do this again someday.

Kirsten: Um, yeah.

Kirsten: Thank you so much for having me on this. I’m, I’m excited to be on your podcast. Thank you.

Kirsten: Thank you for being on.

Kirsten: I had so much fun talking to Ginevra. I think she is a fantastic person. Um, as you can hear, we’re very similar and I’m sure that it doesn’t hurt the flow of our conversation. Um, I’ve taken time to put a bunch of stuff in the show notes as far as links to things like cannabis lube reviews and Frida Kahlo, fibro stuff. Um, and more so make sure to check those out if you are someone interested in those topics. Um, if you’re not, or let’s pretend you’re just a already listening again, um, make sure to check out a Doctor Liptan’s book The Fibro Manual. Um, as someone who’s been living with fibro for a while, probably since childhood, but specifically known for the last couple of years. Um, I learned a lot of really helpful stuff from it, such as what the Fascia actually is. So when we talk about MyoFascia release, um, the Fascia is like if you ever cook chicken, there’s that really thin white layer that’s over like a chicken breast that sometimes you might have to like clean off yourself. And that’s actually what the fascia is. It’s, it’s that kind of membrane that goes over your muscles. So in fibro when you’re, when it feels like your muscles hurt, it’s not actually your muscles. It’s that layer. Um, and something that I’ve found particularly fascinating in the last couple of days, um, since recording this interview, is when I’m having that kind of pain. I’m envisioning it in that fascia and it’s completely changed how it feels. It’s even change like as I take a look at, um, you know, clearing up and helping some of those tender points and trigger points release. Um, it’s really changed how that works. It’s quite fascinating and I don’t really have an explanation for it other than maybe it helps remove some of the narrative of, oh, it’s my entire arm that’s hurting versus it’s this very small part on this one muscle in my arm that hurts. I Dunno. It’s quite fascinating and I wish I could explain it more, but for now that wraps up our April edition of the podcast. Please go out and have a fantastic month and let’s talk again on May 1st… Ish.

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