Episode 119: Buenqamino, Lyme & Co.

Episode 119: Buenqamino, Lyme & Co.

Overview

Christina Kantzavelos (@buenqamino // @beginwithintoday) is a Lyme warrior, award-winning freelance writer/content creator, chronic illness advocate, and licensed psychotherapist. She was diagnosed with Lyme disease and co-infections in October of 2018. However, she struggled with debilitating symptoms and various autoimmune diseases for years prior. Her treatment has included a mixture of Eastern and Western modalities, nutritional changes, a switch to non-toxic living, clean beauty, DNRS (neural-retraining therapy), as well as a strong focus on self-care — such as journaling, painting, joining CoDA, and being out in nature. From being couch-bound and sensitive to just about everything (scents, food, EMFs), she is now back in the world, hiking again, and tolerating most foods and scents. Although she is still on the road to healing, she has made a conscious decision to choose an attitude and intention of thriving over an obsession with surviving — and hopes to share that with others. She is also the author of our favorite symptom tracker, the Begin Within Today journal, and the proud momma of a service-dog-in-training, Cowboy.

Takeaway

Transcript

Buenqamino Buencamino metta LCSW psychotherapist award winning travel writer GF gluten free celiac Lyme disease Uninvisible Pod

Lauren: Okay, guys, thank you so much for joining us. I am here today with Christina Kantzavelos. You may know her as Buenqamino. Christina is a licensed psychotherapist. She's also a gluten-free travel and food writer. She has released the healing journal Begin Within Today through her psychotherapy practice. And because she's a Spoonie, like so many of us, she's going to talk to us about that journal, about her work. Christina, thank you so much for joining us on the show today.

Christina: Thanks for having me here. I'm very excited.

Lauren: Oh, it's such a pleasure to finally have you on this. It’s been a long time coming for both of us. 

Christina: For sure!

Lauren: Yeah. So it's great to have you on the show. And I figured we should start at the very beginning like we always do. Can you tell us about your experience with chronic illness, when you first realized you were sick, what diagnosis you've ended up with, and how you've continued treatment throughout all of this.

Christina: So I have had “health issues” since as long as I can remember. I had constipation as an infant...

GI issues. I remember, between the ages of 2 and 4, vomiting nearly every day from gastric issues.

That seemed to somehow dissipate on its own. And then when I was 8 years old. I started getting migraines. In junior high, I started experiencing some fatigue, as well as fainting. I got my first panic attack and had a lot of chest pain. 

Lauren: Oh man. It’s always around that time, too, isn't it.

Christina: It totally is. And I had some really strange stretch marks that we didn't know where they came from. I went to a doctor, and they couldn't tell us what they were from. I mean, it took, gosh, nearly two decades later to find out it was Bartonella that caused those stretch marks, which is cat-scratch fever, a Lyme disease co-infection. Then in high school, I experienced hypothyroidism, and I went to see a doctor for that. I had little issues here and there, but no one was finding out what the root of it was, what any of it meant, how to help me prevent feeling this way, how it could really help me stop feeling this way.

Lauren: It sounds like it was a lot of mild things that altogether were crippling. That individually, doctors could look at and be like, “Yeah, but … “ and the way they were treated is like … so many doctors have taken so long to take Lyme seriously. And its co-infections.

Christina: Still. Yeah, chronic Lyme is not something taken seriously by most doctors to this day. So two decades ago, definitely, likely, wouldn't have. Unfortunately, I lost my brother when I was 19. He had an underlying heart condition. So I went to a cardiologist to ensure I didn't have what he had, which is cardiomegaly — an enlargement of the heart. And instead, the cardiologist, based on my symptoms, realized I had POTS —dysautonomia. He was, like, “Yeah, fainting isn't normal. Having a low blood pressure, like you had … walking around with 90/60 all the time isn't normal. We need to figure this out.” So we did the tilt table test, and it was confirmed. And then he realized I was hypoglycemic as well. My blood sugar likes to drop to the 40s, just for funsies. I didn't understand any of this. He was placing me on beta blockers. He had me change my diet, but it only helped to a certain degree, and I was able to pretty much ignore it, just as long as I took a ton of salt and drank a lot of water. If anyone knows of or has POTS, you know how important both sodium and water are in keeping you afloat. So I did that, and essentially kind of ignored the rest of my symptoms — until after grad school, I started breaking out a lot. I was one of those lucky teenagers everyone hated because I didn't break out with acne. But in college I started to; it was really terrible. So I went to see a different dermatologist and they would give me creams and medications, and nothing was really helping.

And then I went to see a naturopath, and she right away knew. She was, like, “I can guarantee, based on your symptoms, you have celiac disease.”

That was then confirmed. So I went off gluten. I felt a lot better. I went off gluten, I'd gone off dairy and coffee. So again, my symptoms were kept at bay. I was able to finish my second Master's degree, I was able to continue traveling. Yes, I had some restrictions, but it was all still very much doable. That was until I went to Mexico as a humanitarian social worker, a medical social worker, and I got really sick while I was there. At first it was my throat; it was difficult for me to swallow a lot of different foods. I didn't know if I was eating too much spice, because I had a history of GERD. Then everything started affecting my stomach. So ultimately I ended up in the hospital there. And we just didn't know what was going on. So I had to cut my contract early, which sucked, but it is what it is. I went straight back home, met with a gastroenterologist, I did a second endoscopy … and … why am I’m not thinking right now … colonoscopy!

Lauren: Oh yes. Both ends, as it were!

Christina: Both ends, yeah. Meeting in the middle. He wasn't able to really find much on me. Then I just got worse and worse. I almost started fainting on the job.

Lauren: So by now you're mid to late 20s, probably, right?

Christina: This was 2018. 

Lauren: Oh, so this was a couple of years ago. 

Christina: Yeah, this is when I got really, really sick. I had to decrease my patient load; I was doing home health, so I was visiting mostly older adults in their homes as a community social worker. And I decreased my caseload because I physically couldn't be there. Everything was making me sick, if, if they didn't have the air conditioning on, it was too warm, I began to feel faint. Or, if I was even at our office, I did have air conditioning, but I would have these weird symptoms. So ultimately, I got to the point where I was down to one or two patients, and I just said, I can't do this anymore. I kept seeing doctor after doctor after doctor, and they were like, “Yeah, so you likely have autoimmune diseases, and we can put you on this steroid, but that's about it.” And I wasn't okay with that; I needed more. So someone told me about Bastyr University, which is a naturopathic university here in San Diego. I went to them and they conducted all sorts of tests. I spent hours with them the first time, and the second time, on and on and on. And finally, they’re, like, “You are a very complex situation and patient, we need you to see a rheumatologist.” I'd never seen a rheumatologist before. So they referred me to one who was across the way who had taught taught with them before; he's not just a rheumatologist, he's a PhD and he’s a Lyme-literate physician. He took one look at me and knew I had Bartonella, based on my blotchy skin. I didn't know what that was.

Lauren: So this is in Southern California. Where did you grow up, too … where you would have been exposed to Lyme and co-infections? I mean, we know Bartonella you can actually get from cats …

Christina: So Bartonella is from a cat scratch or fleas. With Lyme disease, obviously, it's from a tick, Every state has ticks, and every state has Lyme disease. It's not as prominent here on the West Coast as it is on the East Coast, but it is nonetheless still here. And they're also finding that Lyme might be carried by mosquitoes. I don't recall ever being bitten by a tick. But a mosquito, on the other hand, I've probably had hundreds of bites from my travels. We don't really have that many in California, as you can attest to. But we still get them.

Lauren: We still get them, yeah. And you obviously have traveled a lot, too, so you could have gotten it anywhere.

Christina: Totally.

I've gotten some really strange diseases from traveling abroad and who knows what was what.

But the doctor actually had also diagnosed me with like Giardia, which is likely what I had gotten in Mexico, and no one had treated me for. So, co-infections, mold … I mean, the list goes on and on with what he found wrong with me, essentially, or what I was diagnosed with. It's his philosophy that things like this … because I was diagnosed with lupus, and mixed connective tissue disease and Sjogren’s … he believes that's all kind of an umbrella, or a manifestation of Lyme and Lyme co-infections. 

Lauren: Well, we know that Lyme is known as ‘The Great Imitator’, too; that it can mimic so many other illnesses. So it sounds like the lupus, Sjogren's kind of family were actually Lyme, but you were having symptoms that mimicked. 

Christina: Yeah, I’m still positive for all of those diagnoses in testing, but he thinks that they manifested because of having chronic Lyme disease.

Lauren: Right. Wow!

Christina:  I got to a point where I, physically obviously, couldn't work. We were starting treatment. And if anyone knows what treatment for Lyme is like, I mean, it knocks you off your feet. You have never experienced anything like herxing, which is the Herxheimer reaction where there’s the … 

Lauren: It gets worse before it gets better. 

Christina: Exactly.

I went from the person who took care of everyone and everything, to needing my parents to be my caregivers full-time, because I physically couldn't take a shower by myself.

I couldn't even get across the room. I mean, that's how fatigued  I became before I even started the treatment. 

Lauren: And what did your treatment consist of? Because I know that there are lots of different approaches that people take with Lyme and co-infections. 

Christina: I was on 26 different supplements. I had IV treatments. I had all sorts of treatments. But the one that knocked me off my feet was Alinia, which is an anti-parasitic medication. Most people take it just for three days. Some people can't even tolerate one day of it because it's that intense. I was on it for nearly a year. So we had to constantly check my liver enzymes to make sure that my body was able to tolerate it. But yeah, it took, I would say, three months to start feeling some normalcy in my life. And then another three months to feel better, like comfortable enough to start driving again. Mind you, nearby, nowhere far in distance. But to doctors’ appointments by myself.  It took about six months. But then, you know, healing isn't linear. I was doing okay. And then, come June, I was supposed to travel and I had a flare-up. We were actually at a wedding in New York; we were supposed to travel from there. And we had to return home. I had rashes all over. I felt like complete crap. And then around my birthday, I also had another flare-up. And that was due to a couple of medications causing me to have increased hypoglycemia. So I missed my birthday trip, ended up in the hospital — not a fun place to spend your birthday. But that once that passed … I mean, I've had small flares that I could handle essentially; they haven't been too terrible. I haven’t ended up in the hospital, so to speak.

Lauren: So you've sort of been through the worst of flushing your system of all the root causes, but you're still constantly maintaining.

Christina: Yeah. I have a couple of doctors; I have another Lyme-literate physician I see. And I just saw a cardiologist whose specialty is in POTS, last week, for the first time. I was on a waiting list for a long time. As you know, when you're trying to see a specialist, sometimes there are really long waitlists. So they both want me to start new treatments for Mast Cell that include pharmaceuticals, not so much herbs and supplements. And they said there may be some herx reactions from that. And so, to be honest, I've kind of been avoiding it.

Lauren: Well, we’re in the middle of COVID as well. The last thing you want right now is to feel really sick in the middle of a global pandemic 

Christina: 100%. I’d rather wait until I feel comfortable enough to be able to go into an ER before I try or test anything new.

Lauren: I think that's probably quite wise! So it sounds like you're like 75% through it? You've been through some of the worst, but there's still some stuff to go that may take place when the world opens up again a little bit.

Christina: Yeah, we were talking about this the other day … between 65 to 70% better. That's where I’m at. I mean, it's taken me a lot to get here. It's not just the diet, right.

I completely changed my entire lifestyle to accommodate chronic illness as best as I can.

Lauren: So I know you mentioned that your parents were helping take care of you. You've had to change some things around in your life to adjust around your symptoms as flares have come as well. What about advocacy and the role that it's played in your health? Is it something where you've had to step up and become your own advocate? Or were you were lucky enough to also have people around you who stepped up and were able to act as advocates for you as well?

Christina: I think I've always had to be my own best advocate. My parents, they immigrated here; they weren't as familiar with the health care system, let alone what chronic illness is, what it looks like, what needs to be advocated for. They’ve been incredibly supportive on all fronts. But that can only stretch so far in their own capacity, and that's okay. As far as the advocacy is concerned, for me, it was finding a doctor who actually believed my symptoms, who didn't gaslight me … who said, “Okay, you're feeling this way. Okay, this is likely because of A, B and C. And are you comfortable with this treatment plan, or would you prefer this treatment plan?” Finding that Lyme-literate physician was … I don't even have … I'll start crying about it! It was a game changer, because otherwise I would have just had to be essentially on steroids for the rest of my life. And where was that going to get me? I'm not trying to knock steroids entirely …

Lauren: No, but they do affect your quality of life. I mean, they're a tough choice to make when you're living with chronic illness. 

Christina: And if you need to make it, there's no judgment there; I see the benefit of them. But in my case, knowing now, my diagnosis, it would have only taken me so far. I would have likely had to constantly increase the amount I was taking. So finding that doctor … him believing me, being on my side, taking care of me, was more advocacy than I could ever imagine. But yes, my parents being able to caregive for me, take care of me … that has also been incredibly helpful.

Lauren: How has it affected your relationships with those people you're closest to in your life?

Christina: With my parents, it was really tough. They had already lost their son, I'm their only other child. To see me in a situation where I, genuinely, at a couple of points, thought I was going to die, was very tough for them to witness. And I wasn't easy to take care of. We had a lot of hurdles to jump between our relationship and our dynamics. At the same time, it was also incredibly healing in some ways, because there was trauma between us that we had to work through. And I found it to be quite cathartic in that way. 

Lauren: It’s very interesting because we talk so much on the show about how chronic illness affects us. But knowing how it affects the people we are closest to, is also so important. To begin to admit to ourselves that there is that kind of trauma that's left behind is an incredibly huge part of healing.

Christina: Yeah. The people who take care of us, knowingly or unknowingly, are experiencing secondhand trauma.

Lauren: Yeah, absolutely. And now we're in this weird bubble, right, where we're in the middle of a global pandemic. God forbid you even have contact with a medical institution because it puts you at risk for COVID! It's just an added layer of potential trauma and confusion and instability, isn't it.

Christina: It totally is. I've had to skip doctors’ appointments and treatments because I don't think it outweighs the cons of potentially getting COVID.

Lauren: And being high-risk already. So, what's a typical day looking like for you at this 65%, 70% healing point? How are you balancing work and life as you're managing symptoms? How are you creating structures and routine that allow you to be the best at being as well as you can be?

Christina: ...

So, prior to getting really sick, I had a tendency to ignore what I was feeling.

If my body was telling me to stop or not do something, I would just …

Lauren: Push right through.

Christina: Yep, push right through.  And I've learned the hard way that you just can't do that. So at this time I try my best. A, I have to get a good amount of sleep. B, my diet is still pretty restricted. So I have to cook all of all of my meals.

Lauren: You talk about your diet being restricted, but what's great about what you do, especially because you write about travel and food and you know all these great places and local markets and stuff in San Diego, where you live …  you show us how much variety you can have even with limitations. 

Christina: Totally. Exactly. Yes. My diet may be restricted but the taste of my food sure isn’t. I make some really delicious items, considering my restrictions. And cooking and baking is self-care for me, I find it to be extremely relaxing. Even if I'm feeling fatigued, the moment I start cooking, it actually calms it down.

Lauren: I found it's one of those things, like of all the stuff I've been doing, especially during this pandemic … cooking is the one of the few things that I can do where my brain’s all in. I’m not making lists about other things or worried about this and that; it’s the only thing I can do that I'm fully present for. Especially if you're following a recipe, it makes it very easy because you're like … okay, step one, step two, step three … it gets you structured, you're thinking. 

Christina: There is mindfulness in cooking. It's a meditation in itself in many ways. Our hands are an extension of our heart. So when we're cooking, if that's something that feels good for us, that's really good for our heart and our bodies and our minds. So I will say, getting the right amount of sleep in and cooking alone takes probably the most time out of my day.

Lauren: Yeah, that's the thing — to eat well does take time. 

Christina: It does!

Lauren: It’s a commitment. It definitely is.

Christina: And especially if you add on … everything has to be organic. So where you're sourcing It is also really important, and yada yada. So then when it comes to actually working, I have to listen to my body. Maybe I'll sit down and do an hour at a time and then I have to take a nap, or I have to rest.

It's literally just listening to what is good for me. If I can go longer than that, great. And if I can't, there's no judgment.

Lauren: So it's a level of awareness you've had to open up since you started getting sick. You're not pushing through anymore. You're checking in a little more.

Christina: And timing. I used to think, what does my body know? (laughs)

Lauren: Oh, man, what a turn-around! Oh, how the turns are tabled! (laughs)

Christina: Exactly. And now I’m, like, oh, you're a little tired. Okay, we're gonna go rest!

Lauren: Yeah, absolutely. It makes you think that if “able-bodied people” checked in with themselves a little more, we'd all be a little better for it!

Christina: Taking a lot more cat naps, too. I'm just saying.

Lauren: Cats have it figured out on many levels!

Christina: They really do. Cats have everything figured out.

Lauren: And they’re not afraid to tell us either. 

Christina: They’re, like, I'm gonna go take a nap now. I'm going to go eat now. I don't care what you think or how you feel.

Lauren: It's very true. There is something in the knowledge of nature, that we're able to see around us. So often I’ll be watching David Attenborough narrating a nature program and think, those animals are doing it right. There's something about the way that we've structured our world that just isn't quite working for us, isn't it.

Christina: Yeah, it's almost as though we are trying so hard to be machines. And we're not, we never will be.

Lauren: Yeah, you have to rebalance. And perhaps this pandemic is, is helping some of us along the way with that as well.

Christina: I think it's offering people at least some perspective, and if anything that's helpful. And then, I try to fit in both meditation as well as movement into my day. If I have the energy, I try to take walks every night around the neighborhood. I wouldn't say night, I'd say late afternoon … that way, I still get some vitamin D, but the sun isn't that strong to where it would hurt my skin or anything like that. And during my walks, I try to go see some nature — because that's also healing — and ground myself in it. So by the time I do all of that, it's a day!

Lauren: Very easily, yeah.

Christina: I wonder where my days go. But I also have to take a minute to step back and realize I do a lot. I’m taking care of myself and it is a lot.

Lauren: And it’s okay that that's a full-time job. Absolutely. You're worth it. I know you mentioned earlier that you've experienced gaslighting in the medical industry. Can you talk to us a little about some of these experiences where you've been confronted and forced to justify or validate the existence of illness when others perhaps couldn't see it and wanted to deny that it was there?

Christina: So yeah, not being taken care of. I was asked if I was seeing a therapist, if this was just anxiety. You know, that’s all it is.

Lauren: Yeah, sure. It’s always the first question. 

Christina: Yeah, it's always the first question. And so many times I've had doctors see me as one of their family members, like, either as a child or their sister, and they'll say, “You know, you remind me of blank, and this is what I would tell them to do.” And I’m, like, mmm, I'm not blank, so you're not gonna tell me to do that. This is my situation, I'm completely different.

Lauren: And just because I'm female doesn't mean that you can categorize me as someone you can boss around either. 

Christina: Oh, yeah. Try telling them that. This happened more than a few times.

Lauren: And I'm sure not just with male doctors.

Christina: No, no, this is across the board. That funny patriarchal system, and energy of it all.

Lauren: But it's understanding that not just medical bias, but that bias is real, that we all live with inherent biases that we need to challenge in order to sometimes understand larger perspectives.

Christina: 100%. And with that being said, I do also recognize my systematic privilege in being able to have decent insurance, and have access to the specialists. Versus, folks who have to be on Medicaid or Medicare and have very limited options and choices. So there has been the negative of having to justify my illness and being gaslighted, not taken seriously as a female.

But I also recognize the privilege of being a cis white female, and what that's looked like for me — opposed to some of my friends and what they've gone through.

Lauren: What do you think things might have looked like if you'd either been like a cis white male? Or maybe you'd been a woman of color, like the two opposites? So maybe if you were a cis white male, people would have listened to you sooner. And as a woman of color, maybe it would have taken a lot longer, given the statistics.

Christina: Yeah, there's actual statistics that will tell you one gets treated a lot quicker than the other and one receives better treatment than the other. And it's really crappy that it's set up this way. I fall in the middle.

Lauren: Yeah, I was gonna say, you're sort of that weird middle space. Yeah. That’s what it's like as a white woman, because you can see the privilege but also, you're not fully experiencing all of the prejudice, either. It sort of goes both ways a little bit.

Christina: It goes both ways. And it spans further than the medical field. It's also justifying what you have to friends and family, right? There's that aspect, too. And I think a lot of people judge your photos on social media. You don't know how many times I've posted a picture of myself and someone will send me a message — well-meaning of course — but, “Oh, I'm glad you're feeling so much better.” And it just hits this nerve I cannot describe.

Lauren: Just because I'm posting, it doesn't mean I feel better.

Christina: Yeah. It also bothers me … if you feel better for an hour or two a day or whatever, that can be used against you in the midst of chronic illness. That's really unfair. But it also happens, and we have to justify it in those situations as well, right?

Lauren: Yeah, absolutely. And it's interesting, too, when you're someone who's in control of your narrative and the way that we are on social media, to be able to take the moments to teach people when they're pushing boundaries, or when they're saying inappropriate things. If you follow someone chronically ill, so many of us in the Spoonie community, we feel the need to be like, okay, let me turn this into a teaching moment, and I won't be an ass about it. But FYI, that's offensive. We really try to teach without being dicks about it. That's what everyone tries to do when they're trying to teach. But fundamentally, if you're someone who is believing something just because you see one part of the picture and not the rest of it, then it's sort of readjusting those expectations, isn't it.

Christina: Yeah.

And you're damned if you do and you're damned if you don't, as someone with chronic illness.

You post a picture of yourself with an IV in your arm, people think you're trying to seek attention. If you post a picture of you hiking out in nature, doing something outdoors, fun, looking happy …

Lauren: You must be well!

Christina: You must be well now, obviously you're not sick. It's those two extremes.

Lauren: And it can be quite cruel, that space in between.

Christina: I think so. 

Lauren: So let's just dig into a little bit about the healthcare system, before I want to talk about all the work that you're doing with Begin Within Today. But I want to get your take, before we get into that, on the health care system. You've already talked a little bit about the failings of the health care system. Is there anything in there that you want to dig more into? And can we also talk about ways that you’ve found that are actually positive experiences, too? I know a lot of that has probably been outside the health insurance system, too, like going to privately paid doctors and naturopaths, right?

Christina: Yeah. So, there are quite a few systematic issues. And I feel like we'd end up spending 20 episodes discussing all of them! With our system, it comes down to its socio-economic factors. Like being able to have access to decent insurance. And even if you do have insurance, like you just said, having the finances to be able to afford practitioners that don't even take insurance. And many don't. Especially the ones that are doing things that are controversial, like taking care of chronic Lyme.

Lauren: That’s one of the most frustrating, especially with Lyme, it's something where the CDC recommends no more than 21 days of antibiotics. And that's the treatment for Lyme. But when you're someone who's living with post-treatment chronic Lyme, and the antibiotics for 21 days haven't worked for you …

Christina: Or, if you didn't even get to do that, because you've had it for so long, and you weren't diagnosed at the time you were infected, where do you fall? So I will say the US healthcare system is wonderful in treating acute symptoms. So if you happen to have insurance and you need emergency surgery, you're set. You’re gonna be taken care of.

Lauren: And our doctors are paid well, so we attract a lot of great doctors into the system.

Christina: Oh, for sure. Brain Drain Central. Welcome to the USA. So when it comes to chronic illnesses, finding a doctor who takes chronic illnesses seriously, let alone treats it, let alone takes insurance …

Lauren: It’s uphill, it’s an uphill battle.

Christina: And when it comes to the treatment of it … I’m not trying to be anti-pharmaceuticals … pharmaceuticals are just one piece of the puzzle … but what else can we do to treat chronic illness? We're talking about mental health, like, what trauma has someone experienced?

Lauren: Well, it's also that perspective of the patient as a whole person, isn't it. Not like, ‘I'm a neurosurgeon, so I'm just going to look at your brain,’ but, like, ‘I'm a doctor, so I'm going to look at how all these systems are interconnected.’ And that's also often the difference between integrative or functional medicine and this allopathic traditional Western model we have, too, isn't it.

Christina: Yes. Where it's just kind of tunnel vision. Versus, being able to see the entire forest, the entire picture. Like you mentioned, there are so many facets of chronic illness and they all need to be given the same amount of attention, the same amount of care. But we also need practitioners who can show us and explain that to us.

Lauren: That's a really good point. We talk a lot about patients having to learn to speak doctors’ language, so that we can go to new appointments and get our point across. But doctors also need to learn to speak patients’ language, don’t they!

Christina: They really do. I joked … one time I was getting IV therapy, and there was about five of us. And we were joking that we could all likely take the MCAT and maybe pass. Because we've had to just learn so much about the medical system and treatments and all the research we've had to conduct when we've had the energy to be able to do so.

Lauren: Which goes to show how chronic illness patients also become real detectives. And in many ways, we could all have our own doctorates at this point. And we don't say that lightly, either. I mean, the amount of research, and this is years of research as well. 

Christina: Oh, years and years and years of research. I mean, I have family members contacting me, saying, “Hey, I'm experiencing this weird symptom. Do you know when it might be?” And I’m, like, “Well, I am not a doctor, but it's likely this …”

Lauren: I always have to be, like, “Look, this is just my opinion, it doesn't count for medical advice …” I have to start with a disclaimer! (laughs)

Christina: Yeah, here's my disclaimer, but that's likely because your doctor is gonna ignore it.

Lauren: Or sometimes, if you could just get proper thyroid testing, or get Lyme testing or something that just gives you some answers to start from as well. Often, people have to go to six, seven or more and more doctors before someone will even do the correct testing.

Christina: ...

I would say I've seen well over 50 practitioners, before being diagnosed with Lyme co-infections. That's sad.

And that's me as a cis white female with education …

Lauren: In a major city with major hospitals.

Christina: Exactly. You ask where it fails us. And that’s where.

Lauren: Let's turn to the bright spot, which is the work that you're doing. Tell us about the Begin Within Today journal that you've recently released, and who it's for.

Christina: So, when I was really sick, at the end of 2018, when I was describing I could barely walk, take care of myself, bathe … the simple ADL/activities of daily living were tough for me … I decided to start journaling my symptoms. I was, like, hey, I really need to document what's going on. Plus, I was being placed on so many supplements, I just wanted to see what was helping, what wasn’t, where I was in my mental health. So I created prompts for myself. And they're simple as checking my vitals, my blood sugar, what I ate/ drank for the day, how much sleep I got, how well did I sleep. Those sorts of basic questions. But then I really got into mind/body literature, and how much your mind affects your body, and vice versa. And how important it is to believe that you can heal and be healthy. And so I catered my questions towards that, and really focused on gratitude. And one thing I loved about my body … because at that time, I hated my body so much … I felt it was failing me … like I said, I thought I was gonna die. So how could I turn my mindset around? And I created these questions. And frankly, I was really tired of writing them down. So I was, like, you know what, I bet I could find a journal on Amazon or whatever, I'll Google something. I'm going to find a similar journal, it might not have the exact same questions. But writing these down took a lot of energy for me when I didn't have any energy. So I looked for a journal that encompassed both mental health and physical health. And I found nothing. Truly, I didn't want to create this journal. I wanted it to be done for me, so I could just fill in the blanks. And again, if I had extra questions, I'd have no problem adding those to the end. But at least I got the majority in there, There was nothing. So I asked around, too, to friends, family, like, “Do you know a journal that you would recommend?” And you know, people had said, “Oh, maybe the Bullet Journal, the gratitude Bullet Journal?” I was, like, nope, I need more than that. I needed to ask these other questions related to my mental health. Or, there were some that were just for mental health. So I decided I would create my own journal, because I know how important it is to document your symptoms, and to just stop and think about how you're feeling, as well as write down what you're grateful for. Just being mindful in that moment. All of these things are really important. So it took me over a year to figure this all out, because I knew nothing about self-publication, finding a designer, finding a content designer. I learned so much about that in that span of time; if any of you ever want to self-publish, I can point you in the right direction now! So I created that. A lot of a lot of sweat, tears, energy and spoons went into creating that journal, but I know how helpful it will be to …

Lauren: … to so many people. I love when we get chronically ill, and then we find a gap in the market, right? We go, okay, here's the thing that was missing. For me, it was the podcast. And for you, it was a journal like this. And then we create it. That’s what's so wonderful about being part of this community, that there's so much fertile creative energy. Look, being chronically all sucks. But we also have lots of answers to lots of questions that people may have, and problems that people are having with the systems in place, the powers that be, as it were. And this journal is really an answer to that, in many ways. I'm using it, and I'm finding it so helpful. Christina was kind enough to send me a copy. It arrived just at the perfect time for me, where I'm creating a new practice for myself with meditation and journaling, and it sort of fits so perfectly into it, and becoming more aware of different stuff going on in my body.  I'm just so excited about it. And it's such a beautiful development of the work you've been doing. Because you're already giving people hot tips on where to source your food and how to eat gluten-free when you're traveling, and doing different things. You have a million resources, this is an additional one. But this is a really, really valuable one. I'm very excited about it for you.

Christina: Oh, I'm so glad! Oftentimes, we don't realize that we are improving in certain areas of our life, be it in our physical health, even in our diets, our mental health.

And being able to just look through the journal and see where you were, how far you've come, is helpful in itself.

And I've also been able to bring the journal into doctors’ appointments. Because I can pinpoint …

Lauren: There’s a symptom tracker in there.

Christina: There’s a symptom tracker. So I can tell you where my symptoms were six months ago versus today, and they have something to go off of. Because as we know, it's more than just blood tests. It's what happens in between those tests. 

Lauren: It's an extension of your medical record. 

Christina: Yeah, exactly.

Lauren: And it's something as a patient, it's such a resource to be able to record stuff for six months, and be able to go back and pinpoint as you say, here's where the symptoms were off, here's where maybe my sleep was off, whatever it is. And you may discover things you didn't know were there that can help you get on the track to wellness.

Christina: Yeah, and even for me, I didn't realize that a few days before my period I become the most symptomatic; I tend to have small flares. And it took me writing in this journal to figure that out. So now, a few days before, I ensure that I'm in a controlled environment at home, and that things are as comfortable as possible in order to mitigate flare-ups.

Lauren: Yeah, absolutely. But it's also one of those things that you can sort of go okay, I forgive my body for this. Like, a couple of days might be a little suckier than usual, but it’s all part of the process. I think that's great. And it's so funny, because when I have journaled in the past and tried to track symptoms and stuff, I've created my own journal as you have in this way. But this is so great, because it saves us having to worry about the format. You can just fill it in. It's exactly what you were doing for yourself. I'm so thrilled about it. And it's really exciting that everyone listening can grab a copy. And we'll certainly link to that on the web page for this episode. And Christina will tell you at the end of the episode where you can find all this stuff, too. But for now, I want to get into a couple of our Top Three Lists, because it's how I love to round out these interviews. Given all of this knowledge that you've been able to accumulate over the years, I wonder if you could give us your Top Three Tips for someone, who maybe they suspect they've got something off, maybe they're already diagnosed with a particular kind of chronic illness and are in this Spoonie world with us … what would you recommend as your Top Three Tips?

Christina: A top 10? (laughs)

Lauren: You can give us as many as you like!

Christina: So I think number one, it is so important to find a treatment team that you trust.

And here's your permission slip to doctor shop and to therapist shop. No doctor is created equally and definitely no therapist is created equally.

And I think people think okay, you go to one appointment and this is it for me. No, no, no. You get to choose who is on your team. I mean, they are going to be the most helpful in your treatment planning. Let's ensure that you truly and genuinely trust them. So that's the biggest one. Another one would be prioritizing self-care and joy. Easier said than done.

Lauren: Yes, and different for everyone. Self-care and joy looks different for everyone.

Christina: Different! Self-care can be literally going to a doctor's appointment. Or it can be painting, drawing, writing, reading, watching funny videos, journaling, meditating, going to support groups or being part of support groups. It's what genuinely brings you that joy, and only you know that. And it's like you said, it's not gonna look the same for every single person. But living a life full of joy, surrounding yourself with things that make you happy, is really important in taking care of yourself. Another one is reducing toxic load. So, living a low-toxic diet. Again, that's going to look different for everyone. I can make suggestions, but you would have to choose what fits right for you. For me, it was going on a low-histamine diet, because I don't do well with anything high histamine; it causes me to react, thanks to Mast Cell Activation Syndrome. And then changing my cleaning supplies to be more natural, so I'm not smelling and not taking anything in that could be harmful, chemical-wise. The one thing we do have control over is what we eat and what we put on our bodies. So it's something to keep in mind. Also, thinking about switching to cleaner beauty. We talked earlier about this, reducing your EMFs.

Lauren: This is interesting because this one hasn't come up on the show yet. So I’m glad you brought it up.

Christina: Yeah, electric magnetic fields. It's radiation, and lowering it has been seen to help people with their symptoms. It's definitely something I recommend people look into. And not everyone is sensitive to them. But it's still something you may want to consider lowering, because whether or not you can feel it, I think to some extent we're all being affected. And hence, you know, the anti-5G movement, or is it 4G?

 Lauren: We’re at 5g. Surprised we're not at 12G, but I'm sure we'll be there soon!

Christina: Yeah. And then in terms of diet, I still like low-histamine. But it's just important that our diets are as nutritionally dense as possible. And again, it's different for everyone because everyone's body is different. I would say those are the biggest ones. Also, moving — movement therapy is really important. I didn't move for a long time. And I didn't realize … because I had one practitioner tell me, I needed to stay as still as possible. But that's apparently the worst thing you can do for POTS. So starting that up again and working with a practitioner; she was a physical therapist who understood chronic illness, especially POTS. So she knew what kind of movements I could do to not exacerbate my symptoms. And that was really important.

Lauren: Targeted therapies. Finding practitioners who will recommend targeted therapies that can work for you.

Christina: Exactly, that should make you feel good, not the opposite. And another one, I would say … creating boundaries, for yourself, for other people. I say I detoxed my life entirely, not just my diet and my cleaning supplies and EMFs and all of that … no, I detoxed socially as well.

There were people in my life who were kind of taking away from my energy — dimming my light, as I like to say.

So I created boundaries for them and for other situations where I put myself and my health first, and it's not easy. I'm still working on that. It is a process, and boundaries are okay.

Lauren: And they're connected to self-love and self-care.

Christina: Yes, yes.

Lauren: I think that's all such wonderful advice. You mentioned self-care and joy. What about the Top Three things in your life that give you joy? What are your three things that you turn to, whether it's for self-care or when you need to have a little indulgence? What are three things that make you really happy?

Christina: The first one is nature. Nature is incredibly healing. It has a ton of benefits. There are days where I don't feel up to going hiking or even walking around nature. Just driving by the ocean. I'm so grateful we have that luxury, or going into the mountains through forests … I find that to be just as rejuvenating and it's something that's really important for me and my self-care and my healing. Another is cooking and baking, like I said earlier. I was never much of a cook or a baker before all of this. I'll be honest, I depended on restaurants a lot of the time. Which is okay, to each their own. But as I became more restricted in my foods and started reacting a lot more, I had to cook in my home, I didn't have a choice. And I was, like, no, I'm not going to settle for mediocre. I am going to cook the best of the best. And whatever I'm craving, I'm going to make … like you said, you made cinnamon rolls.

Lauren: Oh, God, those were not the best of the best! (laughs)

Christina: I’m sure they tasted fine!

Lauren: You know what? They might not have tasted so great. They were okay. They're in the fridge right now, and they are going in the bin later, I have to admit it. They are beyond the point of no return. That was a blip. Usually they're good. This was just a blip.

Christina: I will say, probably I have one out of six blips for me. But we're trying. 

Lauren: We’re learning!

Christina:  Oh, yeah. And, gosh, when it does turn out good, it turns out really good. So I'm happy to constantly try and experiment. Like I said, our arms are extensions of our hearts — and I really enjoy it. Another one would be watercoloring.

I enjoy watercoloring. So when I'm not feeling well, I bust them out, and I'm able to just focus on that rather than what I'm experiencing at that moment in time.

It helps me process, and oftentimes I feel better when I'm done. Or at least, now I feel good enough to just go rest in bed. As we all know, we have those moments where you can't even relax or rest. So these are the things that get me to a point where I can rest. Then when I was at my parents’ house … they have TV and they have cable, we don't have TV here or cable … so I really got into 90 Day Fiance. Fantastic show! Oh my gosh!

Lauren: So that's good for an indulgence for sure. 

Christina: Oh, totally. I do miss it. I don't know if you're able to access it online. I haven’t tried.

Lauren: I'm sure you can. I'm sure you can sign into TLC through your parents’ cable or something. Here are all the tips, guys. Ask your parents for their passwords! It's so funny because I only last night discovered Married at First Sight, and I was, like, where have I been??

Christina: I don't know what that is, but it sounds amazing. 

Lauren: I think you would enjoy! (laughs). It’s great mindless entertainment, but like, whoa … there is a lot happening!

Christina: So is it literally married at first sight?

Lauren: There have been matchmakers who are using what they think are the right tools to make a match. They get married, and then it follows them on whether or not the marriage works.

Christina: I don't trust the Instagram algorithm, and I'm definitely not gonna trust a dating expert’s algorithm!

Lauren: But on a certain level, would I trust a dating expert more than myself 10 years ago, when I was making bad choices? Maybe!

Christina: Do they end up okay, though? 

Lauren: I mean, everyone's different. I just started watching it, and I'm a little bit like, oh, my God! Yeah. So guys, this is addictive television. And it's great for when you need to switch off. 

Christina: And gosh, yeah, we really need that. And then, like I said, journaling and just writing. That's a fifth one technically.

Lauren: You can have as many as you like!

Christina: It is so important.

I forgot to mention with journaling, they've done studies that people have been able to heal a lot quicker and faster while journaling.

Lauren: Because it allows for self-reflection. It's a form of meditation. 

Christina: It totally is. So I really love creative writing, and I love journaling.

Lauren: That’s lovely. Can you tell everyone where they can find you online and where they can find these wonderful Begin Within Today journals?

Christina: I am @Buenqamino. And @BeginWithinToday. From there, you can find a link to the website where you can purchase the journals.

Lauren: You can get a little sampler if you want to check it out first. And you can see more of Christina's writing, and more of her work in general. There's just plenty to poke around on the website, for sure.

Christina: Yeah, there's a free gratitude e-journal for signing up for the newsletter. It's a great way just to test it out. And I should say there's an e-journal option if you prefer to journal on your computer or tablet or even on your phone. There's a perfect-bound version that can be purchased on Amazon and ships internationally. And then there's an eco-friendly version, which is the one you have, that's printed on recycled paper, here in San Diego.

Lauren: It’s beautiful paper! I got it and I was, like, this must have cost her so much money. It's so pretty. 

Christina: It literally was the only option. Thank God it was nice.

Lauren: Yeah, it's a beautiful textured paper. And it's thick. It also feels like an heirloom, a keepsake. It makes it feel special. It's sitting on my coffee table, so I can write in it every morning. Create your practices for yourself. Because man, does it make all the difference. When you can't control anything, the only thing you can control is you. If your body isn't working for you, start controlling your routine and creating that mindfulness technique stuff that's going to help you, for sure.

Christina: It sets a really solid foundation for yourself. And I will say, the days I don't follow that, I notice a difference.

Lauren: Yep. Absolutely. When you get into it, and you start doing it regularly, you can feel the difference. Well, Christina, it's been such a pleasure having you on the show today and chatting with you, and such an honor to be able to feature you especially around the launch of the journal. So we're just continuing to follow your journey and excited to see where the next 30% gets you. And what happens after all this pandemic has passed.

Christina: Yes, yes. And likewise.

Lauren: Yeah, absolutely. Well, thank you so much, and we'll talk to you soon.

Christina: Okay. Thank you!

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