Today we’re getting real about parenting (and living) with chronic illness. Fellow podcaster, Monica, stops by to tell us her unbelievable story and what she’s learned the hard way as a parent with multiple health conditions. I share my own struggles, and the two of us talk candidly about humor as a coping strategy, shifting our parenting standards to really low, and how we feel about having to do that. We also discuss marriage guilt, sex life changes, upswings vs. downswings, the insanity that is being your own medical detective, the paralyzation that contradictory advice can cause, and the problem with “mind over matter” and toxic positivity. We both have a hilarious revelation about optimism, and Monica shares about the ultimatum she gave her husband after the passing of a close friend. If you have a “supplement graveyard” (that’s a pile of half-used supplements you hoped would work), then this episode is for you.
Click here if you want to listen to me overshare on Monica’s podcast, Invisible Not Broken.
Brandy: Hello Adult Conversation Podcast listeners! Today we’re getting real about parenting (and living) with chronic illness. My guest and fellow podcaster, Monica, stops by to tell us her unbelievable story and what she’s learned the hard way as a parent with multiple health conditions. I share my own struggles and the two of us talk candidly about humor as a coping strategy, shifting our parenting standards to really low, and how we feel about having to do that. We also discuss marriage guilt, sex life changes, upswings versus downswings, the insanity that is being your own medical detective, the paralyzation that contradictory advice can cause, and the problem with “mind over matter” and toxic positivity. We both have a hilarious revelation about optimism and Monica shares about the ultimatum she gave her husband after the passing of a close friend. If you have a “supplement graveyard” (that’s a pile of half used supplements that you’ve tried with no luck), then this episode is for you.
Brandy: And really quick, for those of you who don’t know my health condition, I am missing parts of my intestines after two surgeries I had when I was 16 years old. So I have had a host of digestive issues for most of my life, which I didn’t have a diagnosis for because I was never told that the surgeons took these parts from me, so I just found out that my bowels were looted back then about two years ago. This lack of certain parts has then led to subsequent issues such as nutrient deficiency, inability to process fats and chronic dehydration, which also leads to frequent kidney stones and migraines. So I basically have adult failure to thrive – aren’t you just so jealous?! So you’ll have to listen to the end of the episode to hear what’s changed with me since I recorded this episode.
Brandy: I’m excited to announce that I have a quick update on upcoming Adult Conversation events. My darkly comedic book about modern motherhood, Adult Conversation: A Novel, publishes May 5th of this year! I’ll be having a handful of book signings for it, one in Orange County, California, Los Angeles, and Denver. And I am so happy to finally announce the details about a book signing and VIP event I’m hosting in Las Vegas – Land of Sin and also lying in bed with no one touching you and ordering room service. (Take your pick, or maybe both). So join me on Saturday, June 27th at 5:00 p.m. for a book signing at The Writer’s Block, a really rad, funky bookstore in Downtown Vegas. Everyone is invited to that and I would love to see you there! Grab some friends and make a trip of it. GTFO is what I’m saying.
Brandy: And if you want to hang with me and at least one of the podcast favorites at a special VIP event at a swanky (expensive) suite at the Paris hotel earlier that day on Saturday, June 27th, you can buy a ticket to Adult Convo and Chill. With your ticket purchase, you will receive a swag bag of sorts, refreshments, and entrance to a meet and greet with me and informal book club discussion, which might feel like the podcast coming to life! It’s a great way to connect with me in real life and other like minded listeners while in Vegas. But I have to tell you, I have a super limited amount of tickets for this, only about 25, so if you want in on it, head over to my main website at adultconversation.com/events for info about buying a ticket. If you know for sure you want to be a part of this, I urge you to register ASAP. I’m so excited to see you guys there for Adult Convo and Chill TM (trademark), not really. Onto the show.
Brandy: Today on the podcast, I have with me, Monica Michelle. Hello, Monica.
Brandy: And you host the podcast called Invisible Not Broken, which is a popular podcast about living with chronic illness, invisible illness and disability. And it’s a little bit snarky and it provides some laughs. (laughs)
Monica: You are so kind with the “little.” (laughs)
Brandy: (laughs) So you’re my people is really what it is. So today I wanted to talk with you about the struggles and maybe even gifts if I can say that, of parenting while also needing to caretake yourself, and being your own health detective, and seeing numerous doctors, and just basically not having the same bandwidth as others. But first, what’s something that the listeners need to know about you?
Monica: I would go with, yeah, humor and snark are probably my defining characteristics because those are the tools I’ve used to get through the darkest times and the best times. I mean everything is fodder for creativity and humor.
Brandy: Do you remember at what young age you started using that, when it became a tool? Can you think back and remember?
Monica: Oh, well I can’t give you an exact moment, but I can tell you my dad and my mom are hilarious and it was always… Intelligence and humor and creativity were the most valued things in my family. So to make my parents feel proud or to be a part of the adult conversation, I had to kind of earn my way in as far as just being funny or creative or political or thinking really hard. Everything in my parents’ house was a book. Everything was bookshelves and they’re two incredibly creative, amazing people and I was an only child so.
Brandy: Wow, that’s fascinating. I’ve never heard of a parenting situation like that, but I would imagine in a lot of the entertainment families, you know with comedians and like the Seinfelds and things like that, that was the way things were.
Monica: Yeah. If you’ve ever watched The Magicians – it’s my favorite TV show right now – they always say “magic doesn’t come from skill or happiness. Magic comes from pain.” Well, humor also comes from pain, I think. I don’t know too many people who are hilarious or funny who have not gone through a lot and earned their humorous stripes.
Brandy: Oh, that’s so true. Oh my gosh, that’s actually one of the things I want to talk to you about today. Exactly that, the gifts of it. It’s funny when you said about having the humor to cope, my daughter the other day, kids were calling her names because she was wearing this cute Halloween shirt that looked like a bat. And so they were calling her “bat cat.” And then because of course “fat” rhymes with “cat and bat,” they were calling her that as well. And she was getting her feelings hurt. And so we were talking about it and I was remembering back to when I was younger. My maiden name is Mincher, and I was always small and so everybody called me “Brandy Miniature.” And it was funny because when I told my 12-year-old son about this, he was like, “Whoa, that’s a great one.”, and I was like, “Thanks, asshole.” But he kind of wasn’t wrong because I mean it’s kind of genius a little bit.
Monica: It’s really clever there, yeah. It’s not the “fat bat cat” rhyme, like at least they thought it through a little bit.
Brandy: Exactly. Yes, but it was funny because that was elementary school and I remember, so I was saying to my daughter, I was like, “You know, when people would call me that I would just be like, ‘Yeah, I’m small and miniature is another word for small. That’s funny.'” And so I’m like, “You just have to take the power away because it’s…” But then I’m thinking to myself how jacked up is that? That at age six, I was already like, “I’ve got a coping mechanism!” (laughs)
Monica: You know, I think we really do misjudge childhood as we get older. I mean that is like Hunger Games by kindergarten. It is not some warm and fuzzy…
Brandy: It’s true.
Monica: …soap bubble of joy that, you know, we’ve tried to create for our children. Once they get around other kids, it’s Hunger Games. I mean kids are not nice to each other. And I think all of us have to have coping skills.
Brandy: Fair point, fair point. Okay. So I’ve been on your podcast, the Invisible Not Broken podcast. So I know a little bit about you and what your health stuff is, but will you give us the overview of what you’re dealing with?
Monica: Yeah, I’m actually in bed again. I have Ehlers-Danlos, and that is a connective tissue disorder, which means anything connective tissue related is – I get to swear here, right?
Brandy: Yeah. Oh God, yes.
Monica: Yeah. Anything with connective tissue is fucked. Utterly, completely fucked. So that is eyeballs, brain, any internal organs that are held up by connective tissue. And it basically means on a daily basis, I will violently dislocate at least five times and slightly dislocate – my feet dislocate with every step so.
Brandy: When you told me that, I didn’t know a person could do that or live like that.
Monica: Right. And the thing is with my podcast, you know, I started this because I was feeling really lonely. I had just left my business that I had run for 10 years and all the time, I then I started talking to people who have conditions where I’m like, “Oh, you know what? I’m good. This is good. This is fine. I don’t want that. No one can live like that.” So I’m always just jaw on the floor when I hear other people talking. Yeah, this is pretty bad. I won’t lie. It’s awful. And then I have POTS, which is my heart rate can go from 40 to 200 with almost no warning. It can change very drastically from sitting to standing. So it’s like living your own sort of Victorian swoon all the time, you need fainting couches everywhere. It’s pretty cute. And then I have fibromyalgia, and then the new little one to join the group is mast cell activation disorder, which means that I can become allergic to anything, underline “anything,” from itchy to anaphylactic with almost no warning.
Brandy: And that just pops up?
Monica: Yeah, I just the other night had my throat swell up from bread and I’m like, “When was I allergic to bread? Great.” So I grabbed the anti-inflammatories and all the antihistamines to see if I can skip the EpiPen. And then I’ll be fine with bread this morning. It’s just random. Basically, my body is a total drama queen that wants me dead. My avatar is completely just running a muck right now. But yeah, I’m back in bed.
Brandy: So all of these things – I would imagine they’re all related somehow to autoimmune stuff – they all feed off of one another, is that right?
Monica: You know, with Ehlers-Danlos, it’s kind of a package deal and we have different types of Ehlers-Danlos. So there’s the very fatal type that means your organs can easily start tearing. Some people have the really cool skin, so if you remember the rubber skin man from the sideshows, that was a type of Ehlers-Danlos. My skin does not do that cool trick, but it does break really easily.
Brandy: Well, so with your health conditions that you have going on, how many kids do you have and what are their ages?
Monica: I’ve got two. I can’t even say he’s a kid anymore. He’s an adult. He’s actually legally an adult. That’s wild to me. I’m at this weird age where I have an adult child and it is not an after-school special situation, but in the area I live in, having a baby before 40 is kind of shocking. So all of my friends are having their first or their second. I’m surrounded by cute little babies and toddlers and my youngest is in junior high.
Brandy: Wow. So it’s hard enough to take care of ourselves when we have this health stuff going on. And then to add in caretaking babies who then are growing kids, who are then are teenagers, and not to even mention like a marriage or anything like that. The amount of bandwidth it takes to just keep ourselves together is so great. And then to add kids to it, I think that that’s partially for me – I know what has thrown me under, in the times where I feel completely overwhelmed. It’s just that I can’t count on my body to be solid and to know that I’m going to feel okay. So it’s like I’m handling their requests, but I’m also handling my body’s requests and it’s a lot. So how on earth did you parent and mother and show up for these kids when they were babies and toddlers and then growing kids and then teens? How did you do that?
Monica: Holy fuck, right?
Monica: You know, I talked to a lot of people, like especially the younger people with chronic illness. And they’re like, ” I don’t know if I could do this. I don’t know if I could have kids and be like this.” And I have to say, I don’t know how I could do this without kids. And I know that sounds sappy and corny and that’s not like me. I’m not a sappy, corny person, but they both are so helpful and so amazing. And that’s more of a recent thing for me because my third marriage has been very loving and caring and respectful. And my husband is fantastic at picking up where I fall off, which is quite a bit. When I was a single mom with my son that was really hard and he was a toddler. It was the beginning era of digital cameras, and I had just had a surgery where I couldn’t leave my bed and I was alone with this toddler. So I would just hand him the camera and he would shout from all over the house what he was taking pictures of. And I know this is like CPS calling time like, “Oh my God, you let your toddler run around!” I really didn’t have a choice. This was it. And that’s the other thing is I think we’ve really raised the bar on what motherhood is supposed to be in the last 20 years. My mom did not have to do half the shit that I’m expected to do. There was no Pinterest. This is kind of a crazy bar.
Brandy: I think about this all the time. Like for example, I got an email the other night from my daughter’s teacher that was like, “Yeah so on the math facts, you know, we like for them to get 20 or more of these math facts. And so your daughter’s been getting 20 and 25 and 26 and you know, she’s been doing great but today she got a 13 so I don’t know if we want to practice more with her.” I’m like, “Lady, one day.” And then I turn to my husband because I got it right before I went to sleep. I said, “Do you think my mom ever had to deal with this shit?” So anyway, yes, you’re absolutely right. There’s this bar that has been problematically, if that’s a word, raised.
Monica: I’ll allow that problematically, we can all invent our own words at this point. Yeah, it’s crazy how much is expected now. And I’ve just been very clear with everyone in my life, including my kids’ teachers. The bar is low, the bar is survival. The kids lived through the end of the night? Yay. I didn’t do anything that made them need immediate therapy? Great, cheers! I won the day! That’s where my bar is most of the time. I also have had to… which I hate, I like being a consistent parent and when you can’t remember anything, that makes it really hard to be consistent. So we’ve really had to push that honesty is super important in our house.
Monica: The other thing we’ve had to do a lot of is parent from bed, so my when my daughter was a toddler, she really wanted to do things and I would be stuck with dislocated legs. We would have our lazy slug days. That’s what we used to call them and we would watch marathon Jane Austen movies. I’m a geek and my kids have to be. Or we’d have a marathon of Doctor Who. I’d have this bed full of crafts and we would just do crafts on the bed. Yes, it was amazingly messy. You don’t want to ever sleep in glitter, but it worked. I was still able to be involved, read stories. It just, I had to change my idea of what a good mom looked like, like going to the park all the time and running around with the kids and playing tag with the kids, and being a classroom parent who got to be in the classroom. I had to just change what was going to be acceptable to me as where the bar would be set and that couldn’t be set by someone else. I couldn’t let a healthy person decide what a good mom looked like.
Brandy: That’s so true right there, which is we all have different margins. We all have different bandwidths. So if we’re going to compare ourselves based on somebody who’s got a huge bandwidth and we don’t, then what is the point? It’s comparing apples and oranges. So how did you even get your kids to school in the morning?
Monica: What a great question. That’s actually why we had to move. When I was just starting to get really sick – we didn’t know what I had by the way. All of these diagnoses except fibromyalgia were within the last six years and my kids are much older than that. So I was just told I had the worst case of fibromyalgia they had ever seen. So continue with your life as normal. Take your painkillers, just keep moving. We had no idea what my heart was going insane. We did not know why I was falling down stairs or fainting or crying at night or needing to take higher and higher dosages of painkillers. We just didn’t know. So I tried to really push this through and I was living in a very high performing area, the Silicon Valley, where you just have to kill it in business, be the perfect mother. It was crazy pressure. And by the way, you better be a size zero while you’re doing all this. It was nuts pressure. So I was like, “Okay, I am working 80 hours a week because I’m running my business. So I will do the morning routines with the kids and I will walk them to school and I’ll rush to the studio, I’ll shoot until they’re out of school, rush back home, I’ll pick them up, walk them home so we have our mother/child talking time and then I’ll make dinner and then I will stay up until three in the morning editing photos.” So a healthy person would probably be like, “What the fuck were you thinking?” A sick person’s like, “Okay, you were just trying to die.”
Brandy: You were just killing yourself.
Monica: I was literally killing it and that was my body. It was awful. And so I got really bad the last six months of where we were still trying to live a normal life and I passed out while walking my daughter to school and another mom grabbed my kid and she’s like, “Do you trust me?” I was like, “You seem to have someone about her age going that direction.” And it’s this weird place where you’re like, I would never let my child walk off with a stranger. But if you’re on the ground, yeah, you kind of do because she looks generally mom-ish. She’s got a kid so I was supposed to trust her. They’re going in the direction of the school. I’m going to make a safety argument for, she’s actually in better care over there because I can’t even get off the ground and she’s like, “I will come right back for you. I’ll be right back.” (laughs)
Brandy: “Don’t want to get that tardy slip. I’ll be back for you.” (laughs)
Monica: Do you know how many times I’ve almost sworn out secretaries at the school? They are some smug bitches. I actually made my husband start doing all the parent/teacher conference shit because if he showed up, he was a God amongst men. His child showed up dressed and his sick wife was at home doing obviously nothing and he managed to make sure the kids had food, clothing, and I’m not fucking with you when I say this: The daycare we sent her to had this long lecture to my husband when he picked up his daughter about how his wife needs to get it together in the mornings. I’m like, “What the fuck is this?” And he came home and I was like, “I will never go there again. I’m going to find a new daycare, but until then you’re picking up, dropping off. I will not see her again. I cannot do that.” And the teacher is like, if I walked in she was like, “Well she didn’t have this, this or this, you really should have this together.” And it’s like when he picks her up, “You’re a daddy who’s picking up your child! You must be helping your wife out. She must not be feeling very well today.”
Brandy: That is exactly right. That’s that different playing field that we’re on. Did the lady know that you were sick? Was she aware of that?
Monica: They knew I had fibromyalgia and that is finally now being taken a bit more seriously. At that time, it was not even an agreed upon diagnosis by doctors that it even existed. I think what happens is a lot of people here have chronic fatigue or chronic pain and they’re like, “Oh, I’ve been fatigued before, but you just push through that,” or “I’ve been tired before. I’ve been in pain before. Yeah, I had surgery. It really hurt.” My favorite is the headaches. “Oh, I’ve had really bad headaches. I totally get migraines.” So I was like, no, we need better words. We need better terms. So that really – and I think a lot of people are super well meaning, I really do – I just think that unfortunately if this isn’t, well fortunately for you, if this is not in your sphere, you probably don’t have the first idea what it’s like to have to take a nap after a shower. If you have ever had to roll yourself towards a bed and make sure someone is home and in the same room when you’re taking a shower, you don’t get the chronic fatigue.
Brandy: So can I ask you, in terms of the kids – and it sounds like you have these strategies in place to parent from bed a lot and then send your husband so you wouldn’t get shit for not being a good enough mom and all of these things – so then with your kids, did they have a take on it? Were they bummed or were they like, “This is what life is. I get to do crafts in the bed.” Or would they say things to you? How did you know how they were handling what you were going through?
Monica: So I’m a child of a therapist. My dad was a therapist before he became disabled and bedridden. We need a better word than “bedridden,” by the way. We need way better words. So I grew up talking about feelings, which means I raised my kids talking super openly, which has its disadvantages. Trust me, when your kids are teenagers, you don’t necessarily want them to tell you everything, but you kind of do want them to tell you everything. It’s a hard balance. How did they take it? They both take it very differently. I know that my daughter has a really hard time with this. She gets really scared. She’ll be at school and I’ll have to be in the hospital. And we all know that this is not a fatal disorder. The chances of me dying from this are super low. It’s just more of a lifestyle killer than a life killer. But she still gets scared and she still gets really sad about things. But both of them have this incredible empathy. And you talked before about gifts that things that seem to suck give you, one of the things that gets given to children of chronically ill parents is number one, they can do dishes, they can do laundry, they can make entire meals. They don’t get this infantilization of children that I kind of think we’re doing lately of, “Oh they’re kids. We need to make their food for them, make their lunches for them, do their laundry for them, fold their laundry for them.” They can start doing chores at two. Believe me, I know this, and they can do a lot at two. Even if it’s not done right, they can do it and it’s really good for them to do it. So my kids are way more self sufficient I think then than a lot of their peers. They’re also super empathetic. They’re very, very kind and respectful and helpful, but they’re not always that way at home, but they’re really like that for others. Yeah, there’s a lot of stuff though that is hard for them and it’s been at different stages and what’s hard for them. My daughter, we just took her to another country and she had all these things that she wanted to do, but we set expectations.
Brandy: Wait, so you went to another country with her?
Monica: Yeah, I travel still.
Brandy: Okay. We need to talk about that, but okay. Keep going.
Monica: The thing is, I think that where everything falls apart, whether that be marriage, family, countries, people, any relationship, is if expectations are set and not met. So if I set the expectations with them like, “Look, we’re going to write down each of us one thing we don’t want to leave this country without doing. We will do everything within our power to do that one thing.” And then we write our “this would be really great to do.” So we made sure that each of us got to do that one thing in that country. And then there were two things that were kind of high up on her “I really want to do this,” but I couldn’t do it. There was no physical possible way I could have done those things. And each day we’d talk as I got up and as we kind of got a feeling for what the day would be like, we were like, “Okay, we’ve got about this much time where physical things can be done. What’s our number one goal today?” And so we’d set that goal and then if there’s more time we could try something else. And that worked out great. She did get to do her one “Oh my God, I have to do this” thing.
Brandy: It’s so brilliant how… and maybe it’s taken you a bunch of years to learn or maybe you just learned immediately with not feeling good about changing the expectation and lowering the bar. That’s what I always say. It’s like I just want to be functional. I don’t even need to feel heightened joy much of the time. I just want to be able to do normal things. I’ll go out and go to lunch and I’ll look around, and I am looking at people like they just get to sit here without the same sort of stuff that I deal with, like this meal I’m about to eat, is it going to hurt me? Is it not? Is it going to cause a digestive episode? Is it going to ruin my day? Is it going to ruin my next two days? I just look and who knows, because 90% of the people could have some invisible thing like I do. Sometimes it’s hard to look around, and so anyway, I so operate on this low bar when it comes to survival mode. Sometimes I’m in an upswing and when I’m in an upswing, I plan all this stuff because I’m like, “I feel great!” And then usually by the time the stuff rolls around, I’m in the downswing and it makes me crazy because then I have to cancel things. But I also love the upswing me. The upswing me was like, “No, we can do it. We can live life!” (both laughing) But I’m wondering about with the lowering of the expectations, how do you emotionally handle that? How do you emotionally handle being the low bar mom that you didn’t think you were probably going to be? What is that like, the guilt, just the emotions behind that?
Monica: That really depends on the day you ask me. I also get pretty big levels of depression and anxiety, so if you asked me during one of those swings, I mean I would not say… Have you ever heard of Patrick Rothfuss or Wil Wheaton? Are you that geeky?
Brandy: Wil Wheaton, yes.
Monica: The two of them did a podcast episode on mental health, and Patrick Rothfuss discussed how there’s almost like this, “I can do anything in two weeks” and you’re just in this upswing of optimism and I will tell you right now, optimism bites me in the ass more often. Optimism is what is going to kill me. (laughs) It’s either going to be saying the wrong thing to the wrong person at the wrong time or optimism. One of those is going to get me.
Brandy: That’s so hilarious. It’s like you have all these disorders, but you’re like, but the optimism will kill me, not my actual disease. No, no, no, it’s optimism. (laughing)
Monica: No, no. A smart person wold be like, “So I dislocated my tibia and my shoulder. I’m going to skip PT tonight.” What did I do last night? I did PT on a dislocated tibia and shoulder. That was stupid and optimistic and ridiculous. Or I don’t want to deal with my wheelchair or I don’t want to deal with my canes. I’m just going to walk like a regular person. Yeah that goes really well after a block. It’s just these weird bouts of optimism or also getting bored and sick of my condition and like fuck this, fuck the wheelchair. Fuck my pills. I’m just going to go and live like a normal person for a day. And I get these weird ideas that, how do I say this, not that it’s in my head, but that I can conquer it with thoughts.
Brandy: Right. Like if I just let go of it and accept it, it will be fine. I’ll just go live like a normal person. And maybe that’s the thing all along is my body was like, “You haven’t trusted us,” some bullshit, but that we believe. (laughs)
Monica: Here’s where I’m going to say fuck The Secret. Fuck the whole idea of what Marianne Williams was saying. It’s just this mind over matter kind of idea over sickness. And that’s where people get really mean to you is like, “If you just, if you just gave up wine, if you just gave up caffeine, if you just gave up negative thinking, if you just gave up being sarcastic…” “If you just” needs to be removed when talking to someone who’s sick. But it gets into your head, you get this weird, magical thinking of, “Maybe if I was just more positive, maybe if I just believed in myself and my abilities, I’d be able to walk.” It’s like, no, no, no, no. There are actual physical things here that are at play. This is not a mind over matter situation and I keep forgetting that and it’s-
Brandy: Me too.
Monica: Right. Yeah.
Brandy: Well, and I think you and I talked about it too on your podcast, about how we learn something about our health condition and then time goes by and maybe we’re in an upswing so we forget the thing that we learned and so then we have to relearn it again. I go back in journals, I’m like, “Oh my God, I already learned I shouldn’t eat that,” or this is the thing that I need to do, but I forget it because when I’m doing good, I’m like, “I’m normal.” My optimism is totally like, “I’m normal,” and then I have to relearn it. I have to go to a doctor and they’re telling me the same thing that somebody told me a year ago and I’m like, “Oh yeah.” And so I think on the podcast we laughed about this – I go down to my supplement graveyard in my kitchen and I’m like, “Oh yeah, I already was taking curcumin and I already was taking B12,” or whatever. So it’s like, I’ll just pull it out. I hadn’t taken it for six months when I thought I was normal because I was on an upswing. That part is so frustrating. I feel like I’m running in a circle my entire life on that.
Monica: Yeah. I love your supplement graveyard because I have one. It’s always like this: “Well, did I give up on it too soon or was I using the wrong brand?” Because we’re in the United States and in the United States people fought really hard for the FDA to have no fucking say over our supplements, which means we don’t know if our supplements actually contain what it says it does. There’s nothing legal to actually back that up. So we literally do not know what’s in these pills because there’s no oversight on it. So it’s like, okay, well was I taking the wrong brand? But there are so many moving factors to that question of should I be taking vitamin B, vitamin D, and then I have the other moving factor of we don’t know what’s going to happen today.
Monica: I woke up this morning, I had a dislocated femur, I had to relocate it. It seems okay. So it’s like, okay, now do I go along with protocol for my arms or is my wrist going to dislocate today or am I going to have a mast cell attack where the medicine that I like to take will cause my throat to swell? I just, I don’t have anything that’s protocol because there are too many moving parts. So I’ve gotten ridiculously jealous over people who are like, “This is my reality every day.” I’m like, what? You have an everyday thing? Oh my God, you can actually make a plan. Because I was talking to this lady, I was like, “Oh wow, so how does this change your life every day?” And she’s like, “It doesn’t, I’ve been like this since I was a kid. I have to use my wheelchair every day. This is my life.” And I’m like, “Oh, you can make plans then. I’m sorry. I know that sounds awful. But no, you can actually plan out your future.” I can’t make a decision for if I could ever work again. I mean the government’s pretty clear – I can’t and my body’s pretty clear I can’t. But every once in a while I’m like, maybe I could work one day a week. There’s no way to make any financial plans or any… You talked to me about travel, like that makes my travel plans super weird.
Brandy: Well, that’s why I was going to ask you about the travel because I had a thing happen recently where on an upswing, I booked this trip to go visit some family that I hadn’t seen in years and I’m so excited for it and it’s without kids and it’s only two days. So in my mind you probably already know what I was telling myself. “It’s only 48 hours. I can handle anything. As bad as it is, it’s 48 hours. I can handle it.” And so I’ll take my Xanax with me and we’ll be fine – as if that cures all of the ailments. And by the way, I take a half a one because I’m so sensitive to everything. So it’s all a joke. I joke that we need to have Xanax lollipops. So you’d just get like a lick and then your mind is like, “We’ve done something,” and then it’s better.
Brandy: Anyway, I go on this trip, I’m having a great time the first night. The flight was good and I’m all like, look at me. I’m a normal person. And then that night I was thrown into a digestive episode that kept me up all night with awfulness happening and then I couldn’t go to all the stuff on the next day. And then I finally slept okay that second night. But then the next morning I woke up feeling like shit and then nervous because now I gotta get on a flight and make it halfway across the country and I don’t know where the bathrooms are and all of that kind of stuff. So, I was so mad at myself that I even thought I could do this. I’m like, “Of course, Brandy. Why did you book this? Why did you even think you could do this?” And also while I was on that same upswing months ago, I booked another trip for this month that I’m already like, “I don’t know if I can do it.” I don’t know if I can go because it is miserable to be sick and not in your own space. You don’t have your normal food, you can’t just go away, you’ve got people checking on you, which is lovely. But also, so for me, travel is this thing that I have lots of anxiety about, not the plane ride or any of that, but just like, what is my body going to do while I’m there? And so how did you take a trip to another country? What kind of mindset did you have to get in to say yes to that? Or was it on an upswing that you booked it?
Monica: I think I’m really lucky. The first time I ever traveled was the worst I’ve ever felt in my life.
Brandy: Okay. So why was this lucky? (laughs)
Monica: It’s lucky because I still would’ve done it again feeling that way in a heartbeat. There’s something about traveling that wakes my soul up. I start losing track of time. I’m seriously some days feeling like the Victorian novel of the woman in the attic that everyone forgets about and days just start melding together and life goes on without me out there. And they do try to come in and talk to me, but days start running together. I start, I’ll look up and a whole month’s gone by. I’m like, what the fuck happened to that time? But when I go traveling, even when I feel like I’m going to die, the days actually matter. The hours matter, each minute I’m seeing something I’ve never seen before, experiencing something that I have never experienced before and there’s no way to describe how it makes you see your life when you get to see it from far away.
Monica: I just went on a camping trip with one of my best friends and she’s a doctor. That’s why I got to go on a camping trip. She actually is certified to bring me back to life, and just spending those 24 hours drinking wine, watching clouds, I didn’t have my cell phone, I didn’t have any technology, but it rewrote my brain on how I wanted to treat my technology because it’s really easy for me to use it as a pacifier. I’m in pain, let me just run down a YouTube rabbit hole and let me forget that I exist. But the only thing you never get back is time. And it makes me actually appreciate it and it reminds my brain what kind of person I want to be, what I want to set up for myself, what I actually want to still accomplish in my life. And traveling resets me. And I just don’t have a better word for it. But I get a complete reset when I get to go somewhere and I have to find travel partners who love me for who I am and don’t feel like I’m in a drain.
Brandy: That is such a key point to have people in your life who really, really get it. So I have this friend and she’s kind of broken in some similar ways to me. We use the term “broken” kind of humorously, but I feel like someone’s not your good friend unless you’ve… I have it written down because it was something that so spoke to me. Oh yeah, “We all need a friend who will speed home so you don’t shit your pants and for whom you’ve done the same thing.” To have those people that just absolutely get it, and you don’t have to constantly apologize, “I’m so sorry I’m ruining your trip,” or whatever that come with those expectations that you talked about that. No, when I’m with Monica, when I’m with Brandy, we don’t do all the things and we don’t go level 10 on things. We do what we can and every day is sort of up in the air because not everybody can hang with that. I mean shit, I feel like my personality at the core does not want to hang with this. If I wasn’t in this, I wouldn’t want to hang with anybody in it. It’s not fun to have your day feel like the rug might get pulled out from under you. So to be with somebody who also gets that and is okay with that is the biggest gift ever.
Monica: But you asked me about like the sense of humor thing and I don’t think I could ever untie my illness from who I am because really everything reflects on you, and I feel like humor is how I pay for my supper. That’s been a hard thing to come to terms with is how much of my personality is developed around entertaining people to make them not have to feel like, “Oh, I’m dealing with her.” It’s like, “I’m dealing with her, but she’s pretty fucking funny.” That’s always interesting to me about how that goes because almost everyone in my life is healthy except my dad. Everyone else is pretty much okay and doing well so I do have to admit that a huge part of who I am is singing for my supper and it’s the people who I’m really, really close to I know I don’t have to be funny around and I can cry or I can curl up in a ball and be like, “I cannot take this pain level.” I think my husband’s maybe one of the only people and my best friend, who have ever seen me at that place.
Brandy: Oh wow. Yeah. Well, so okay, so speaking about having these people in our lives that we can be real around and some of the coping strategies like humor, what are some of your strategies that you have that your day revolves around, or little things that it’s almost self-care in a way. What kind of self-care things do you have set up for your day in your life?
Monica: Yeah. The biggest self care thing I ever learned is “no.” That’s it right there, the word no. And that could be either, “I don’t think I can do it,” or “I really don’t fucking want to use my spoons to do this.” I have very few… and for any of you who don’t know what spoons are, it’s a theory that you get just so many spoons in a day and each thing you do is a spoon. And I’m not kidding you when I say flossing my teeth is two. I will pop my thumbs out, flossing my teeth, no problem. So it is really a thing of I only have so much energy to do things in a day and there are hopefully other parents who have much bigger energy and time resources than I have and I’m going to let them be the heroes in the classroom, and I will thank them and I will bow down to them, but it’s not going to be me. I do not have the bandwidth to help out at school. It’s not something I can do, and I can’t be relied upon. And that’s the biggest reason I can’t work. There are hours, minutes, and even sometimes days where I can actually behave pretty normally. I cannot tell you what those will be…
Monica: …when or how long it’ll last. So I can’t go into a classroom and do much. So the best self-care thing I’ve ever learned is “no,” and “I don’t want to” is a perfectly good excuse to say no.
Brandy: Yes. Well, and to go back to the spoons thing. So isn’t part of that theory too that each person has a different amount of spoons that they get every day, and does it change on different days?
Monica: All the time, for me, yes. And I think for most of us who have chronic illness versus disability – a disability tends to be defined, like I was in a car accident, I have no use and it’s a predictable thing. It’s something that happened and it’s a disability. Chronic illness is more of a flux thing. You just don’t know how you’re going to be hour-to-hour, day-to-day, moment-to-moment. Even though I am disabled, there are definitely things I cannot do. It definitely changes hour to hour and definitely minute to minute.
Brandy: Right, yes. That was like yesterday I messaged my friend, so I do the afternoon pickup stuff but we kind of switched days. But yesterday I thought, oh wouldn’t it be great to go do a walk? So I messaged my friend and I said, “Hey, do you want to walk to grab the kids today?” And so she was like, “Yeah, that sounds great,” because exercise and vitamin D and sunshine and all these things are good for us. I think that’s one thing that there hasn’t been contradictory info on. So we’re walking and all of a sudden I feel so nauseous that I’m pretty sure I’m going to throw up. And it just comes out of nowhere. And of course in my bag I have my little ginger chews. That’s part of the strategies. I walk around with so many little accoutrements to stave off, so I always have a half a Xanax with me. I always have the ginger chews with me. I always have water with me. I always have an Excedrin or an Advil with me because that makes me feel like, “Okay, I can’t control what my body’s going to do. And if I throw up, it’s not the end of the world. I mean, I’ve done worse things, but at least I have these things that are maybe fake, but they actually feel like, well I’ve got some safety nets if things got really bad.” But so anyway, that was just one of those moments where I’m walking and all of a sudden I’m just absolutely nauseous and having to white knuckle through it and then an hour later I’m fine.
Brandy: And that’s the thing, I look around at these other parents walking their kids home and they’re like, just so seemingly clueless about what – I don’t want to say gift again – just clueless about how lucky they are to be able to do that without the thought in their head of “where am I going to throw up?” or “Am I going to dislocate something?” And again, all of us are struggling with some sort of thing, but it’s just so interesting kind of looking around at the world sometimes and feeling like “I remember what that felt like.” For me, that’s part of the frustration with my chronic illness is I remember what it felt like to be that person that went on a trip and it was just all fun and there was no, “What is going to happen? What’s my body going to do?” And I think, I don’t know that I’m ever going to make full peace with not getting to live like that.
Monica: You all blow me away. I talk to so many of you guys who got sick later in life and I don’t know how you fucking do it. I’ve been in and out of hospitals since I was eight.
Brandy: Oh wow. Well it’s funny because I don’t know how you’ve done that. We’re both kind of like in awe of each other.
Monica: Yeah. It’s way easier. I have to say it’s so much easier because I don’t know what it’s like to not be in pain every day. I am in pain every second of every day. My good days, my I can go for a walk day is a five. I can go for a walk, pretend I’m normal. I’m like that’s a five for me. Last night I was at a nine. I don’t know how to anyone deals with chronic pain or chronic issues who hasn’t grown up like this. If it’s just your everyday and you’ve been doing this forever, you know the cycles of it.
Brandy: Well, and also, I don’t know if you shared this, and I can’t remember if we talked about it on your podcast, but this marriage guilt, I have a specific flavor of it because unlike you it sounds like, when I married my husband, which was forever ago, we’ve been together over 20 years, I was fine. And so I feel like he got some sort of raw deal even though he doesn’t feel that way and he’s only been loving and supportive and patient and totally just amazing in support of me and picking up my slack and things, but I can’t help but feel like he didn’t know he was signing up for this.
Brandy: And so I have these daydreams of him finding this woman who’s got this robust immune system and who isn’t looking for bathrooms everywhere she goes. And he’s so hearty, we are such a juxtaposition. He is so hearty and I feel like I’m so fragile physically. It’s like, he’s a constant mirror to me of damn, nothing gets you, you are just so fucking solid all the time. So I imagine him with another solid wife and I think he deserves that. He deserves somebody who can match that. And I know that’s all crazy fantasy talk that’s not real and isn’t rooted in anything that he’s giving me, but I can’t help but feel that guilt sometimes. Nobody else signed up for this. And also side note, I didn’t sign up for this either, but do you ever have that kind of guilt stuff or is it different because you’ve always had your health stuff and so your husband actually did know what he was signing up for?
Monica: Here’s my rabid feminism: I don’t know if anyone in the reverse has ever thought that. The divorce rates for my illness or disorder are through the roof. It is so high. And there are so many people with breast cancer that their husbands leave and they get divorced, but I don’t know how many people can say the reverse on that one. Do I feel guilt? I don’t know. I try really hard to not do the guilt and I fail at that quite often, but it is a practice. I definitely feel guilty sometimes about sex, like if I can get into the weeds because you imagine that if you just turn to say something to someone and your tibia dislocates, imagine sex. It’s definitely something that’s a problem. And I’ve definitely talked to people on the podcast who had these really, let’s say acrobatic sex lives before illness and then they are very fragile now and their whole relationship had to change. That’s why I brought the sex expert onto the show was to talk about relationships, sex and chronic illness and disability because no one’s talking about it. And at least for me, that’s a really important part of my life. I don’t know what else can feel that good, make me actually be grateful to be in my body because nothing else makes me feel grateful to be in my body except maybe chocolate and salted caramel. But other than that-
Brandy: That’s such an interesting point.
Monica: Yeah. Working around that and making sure that that’s still a part of lives has definitely been a more plotted and thought out thing, but very difficult.
Brandy: Right, because I’m like, I want to ask you, so what the hell do you do? How you handle that because any movement… but I also don’t want to dig into your total personal life but like-
Monica: Oh yeah, fuck no go ahead. (laughs)
Brandy: (laughs) So how do I ask the question about like okay and maybe this helps people who have painful sex, but how does your pelvis handle thrusting or does it?
Monica: So it sometimes doesn’t. But what I found is there are certain positions like side, and pillows are your best friend. Setting up a pillow fort beforehand is actually super helpful to use to brace. Also, redefining what’s sex, what’s intimate has been really helpful too. Because sometimes that is not going to work, so you have to try something different. Even just saying what I need is intimacy. Maybe that’s not sex today, I just need intimacy. And then that’s more about going back to being in high school and just petting and snuggling and giggling and being cute together.
Brandy: Sending each other mix tapes? (laughs)
Monica: Oh my God! (laughs) That brought back a whole bunch. All of that is really helpful. And then sometimes it’s just everything’s going to fall apart and that’s okay and I’ll put everything back together later because I just want to have a lot of fun right now.
Brandy: Yeah. I can totally see how that would happen. I mean, not related to sex because I don’t have your same issue physically, but even about some of the food stuff that I have about what’s going to hurt my body and not, because sometimes when I’m in a downswing I think, you know what, if I’m going to feel like shit anyway, then I’m just going to enjoy it. I’m just going to eat whatever I want and not even care. And you know what’s so fucked up about that is usually when I do that, my body is more mellow and then it validates for me this thing that like oh, it is all in your head, so when you just let go…. And so then I’ll feel good for a week. And I’m like, “Wow, I guess I just eat whatever I want and I’m normal.” And then maybe I get a couple good weeks and then all of a sudden I have an episode and I’m like, “I knew it! It’s the gluten, it’s the dairy that I have never tested sensitive to,” but for some reason, and then I start the cycle over again. It’s like, maddening-
Monica: We both are in the same place exactly. Yeah, I absolutely hear you on that.
Brandy: It’s so awful.So when you have chronic issues going on, I find myself in a push pull between, do I accept that this is how I’m going to have to live – I’m always going to want to know where the bathrooms are and I’m always going to have to have my little accoutrements with me and I might not get to travel. So is there something about the sort of Zen nature of just, this is my life? So next time I have a digestive episode, instead of being in excruciating pain and doing my birth pain coping techniques while it’s happening, instead of going through my head, “Why is this happening? I need to see a different doctor. I’ve done the naturopath. They didn’t take insurance. What if I could find a naturopath that did? Well, I don’t know,” but before I go through all of that, maybe I just breathe (which I’ve done this), and accept that I’m just having an episode and I’ll move through it and it will get better in a couple of days. Brandy, this is just your life. So I oscillate between that and also trying to be my own detective and saying maybe I haven’t found the right doctor yet. Maybe they haven’t found the right thing because each doctor that I go see different… if it’s a naturopath or a DO or an MD or a GI doctor or whatever, everybody gives me a piece of my puzzle and nobody has ever had the whole thing figured out. But I’ve gotten helpful pieces and that’s something I just recently learned is that there’s never going to be anybody for me that has it all figured out. But when I’m feeling totally hopeless like I was after – I was feeling desperate after that trip where I was just sick the whole time and I came home and I hadn’t seen a new doctor in a couple of years and I thought I’m going to ask around for recommendations about my specific issues and I found somebody that a bunch of people recommended, and so I’m going to see them tomorrow and I have basically 0.1% of hope that they’re going to be able to tell me anything that’s going to help.
Brandy: And I forget why I’m even mentioning this (laughs)… oh, is because there is that push pull of are we preparing for war? Are we believing in peace? Which one is happening? And I would like to just pick one and live my life that way rather than every day be on the roller coaster of we’re doing something about it, we’re accepting it, we’re doing something about it. So what insight do you have on that? Where are you on that spectrum?
Monica: Okay, so as far as do I accept this or not, that’s been the battle lately and it was the original battle when I was deciding whether or not to leave my business, which I built up. It was successful in every possible way, financially, emotionally, creatively, socially. Every part of it made me really happy.
Brandy: And you were a photographer, right?
Monica: I was. I was a professional photographer in the Silicon Valley and I got to do amazing jobs. I was always stimulated. Creatively, intellectually, I was always stimulated and I got lots of scratches behind the ears of, “You’re amazing. You’re really good at what you do, you’re excellent.” I got all of the little ego pets I needed for my work, but I was so terrified of losing my business because I was falling apart. I was having to take higher and higher dosages to painkillers. I wouldn’t feel pain while I was in the zone, and when I was photographing, I was in the zone, and everything else stopped. But the second my camera went down, I would almost fall on the ground and I would be scared to use a cane out in public because I was afraid somebody would see it and be like, “Oh, we can’t hire a disabled photographer.” I oddly had this one client who she came into look at her pictures and it was a particularly horrible pain day and I started crying in front of her and I don’t do that. It’s a really hard thing for me to not be the healthiest gazelle in the group going, “Lions, I am just fine! I’m just going to keep hopping here.” And I just kind of blurted out, “I have chronic pain. I can barely move. I’m so sorry. I didn’t mean to do this in front of you.” And she shook her head. She’s like, “Did the person who referred me to you tell you what I do for a living?” Actually no, I have no idea what you do for a living. She’s like, “Well, I actually am a counselor. I’m a therapist and I work with disabled people. So let’s chat.” And it was one of the most beautiful moments ever of her talking to me about coming out of the disability closet and giving the trust over to the people in my life and trusting that life will still have meaning no matter what is going to happen next. And that was everything. I started to use my canes, I started to use my wheelchairs on shoots and my clients were amazing. The second I’d be done, the strongest person in the group would start putting away my props for me.
Monica: And I did that for about four months until my health took a nose dive like you would not believe and I couldn’t get out of bed. So that was really hard because every step of “do I use a cane?” was giving ground and if I give ground to this, what else am I going to have to give ground to? If this is the first step and I kept thinking linearly like this – like somehow my disease was going to progress linearly – if I give up and I start using a cane, well next is going to be a wheelchair and next will be this… That’s always the big fear is if I give ground, what else am I going to have to hand over to this? What else is Ehlers-Danlos going to gobble up in my life? And we’ve all watched House, we’ve all watched Grey’s Anatomy, all of us who have had an unnamed illness have watched these shows like detectives, like, “Someone’s going to come in with my symptoms in the plot line and I’ll get an answer finally!”
Monica: And it’s so exciting watching these shows because you’re like, “Oh my gosh, this is how this arc works is you come in with this unknown illness and a team will amass and figure this out and you will not die and there’ll be a prognosis and you will know how to follow it and there will be your answer!” And that is the biggest Hollywood bullshit lie ever. Because what really happens is some doctor will go, “Well that’s weird but you seem healthy from all your tests. So obviously it’s in your head. Bye.” (laughs)
Brandy: Right, and then you go home and then you feel shame. (laughs) They don’t show the shame side of it and how long it took you to even get this doctor, the fact that this person was booked out for four months and then you finally got-
Monica: And how much it costs.
Brandy: Yes. Oh my gosh. All of those things.
Monica: And I have a weird illness. Ehlers-Danlos is super under-reported because most doctors don’t know to look for it. And there’s only one specialist in Northern California and it’s the weirdest illness because if you have any other kind of disease, illness disorder, disability, if a person with a white coat and a stethoscope says you have it, you have it. No one asks any questions. If you have what I have in Northern California, unless this one doctor has magically signed off on you, no one will put it in your chart. So I had to wait three and a half years to see this doctor because he was so backed up with cases.
Brandy: Oh my gosh. And the irony to all of this is that you already have a smaller bandwidth when you’re dealing with health stuff, but then it’s actually the time in your life where you need a bigger bandwidth to call the doctors, to find the referrals, to deal with their office, to see when they can see you, to try one. If that one doesn’t get what your condition is, you’ve got to try another one. The amount of energy it takes, even just as a healthy person to do that, and now we expect somebody who is in survival mode to also be their own health advocate, and then also by the way be raising children is like, it’s beyond me. It’s such a messed up irony.
Monica: You also have to check up on your billing.
Brandy: Yeah. Oh my God, the billing alone.
Monica: Yeah. It’s a fucking expensive hobby to be disabled and sick in the United States. I have had $15,000 bills from insurance from a hospital visit. So when you are sick, disabled, and you’ve just gotten back from the hospital and you now have to go and negotiate with the hospital and with your insurance company, it’s impossible if you’re sick. That’s what they bank on is that you’ll be too sick to fight.
Brandy: I can’t believe this is how we do it! I had a friend who was going through cancer a bunch of years ago and I asked her how I could help her. And so she said, “If you can come over and organize all my health bills and put them in a binder and figure out what has been paid, what hasn’t,” and I’m thinking, this is so messed up. Here my friend is, she’s got no hair, she’s been through chemo, she’s fighting for her life, and she’s worried about this paperwork for this money. This is not okay. Ugh, I know we could have an entire podcast about that.
Monica: We could. I have a really dear friend who was a comedian and I just love her. I miss her so much. She ended up getting lung cancer, which was fatal. She was a comedian, that means no health insurance, nothing. And her medical bills bankrupted her. So while she is dying, they are trying to repossess her house. And she called me up and she’s like, “Come up and see me.” And so I brought the kids, and her grandkids are there and we’re at her house in Northern California with this beautiful creek and we’re sitting there and the kids are playing in the creek, the sun is gorgeous. And I’m like, “How are you having to worry about this being repossessed?” And she’s like, “We’re not talking about that. We are going to sit here in the sunshine and watch the kids.” And that was one of the best lessons I’ve ever learned in my life was, I don’t know if it’s a Taoist story, but this monk is running away from the tiger, jumps off the cliff, and then grabs a strawberry to eat on the way down. Everything can be going to fucking hell, and you still need to be able to grab that strawberry and eat it and enjoy it. And that was an incredible lesson from the psychosis of American health right now.
Brandy: Oh my gosh. Well, and part of what makes it so tiring to deal with all of this stuff is the contradictory advice. I know that I’m paralyzed because I have this GI doc who I chose because she is a vegan and I thought, well that means that she looks at food a little bit differently and she thinks out of the box and she’s maybe not as Western med, so maybe she’s got a little bit of natural in there, but not too much that it’s like we’re talking crystals and all of that kind of stuff. But so it turns out if you have a vegan GI doc, any issue you have is because you’re not vegan. And so it’s backfired on me a little bit. She did give me another huge piece to my puzzle and I’m grateful for her for that. But I’m finally realizing, and it’s interesting that all the experts on the digestive stuff that I’m dealing with all say that a vegan diet exacerbates this issue, which is this thing I have called SIBO and it’s chronic because of my anatomy and all of that. So after this last digestive episode I had, I came home and I thought I need to see a doctor. And I immediately thought, well, I can’t see my GI because she’s just going to ask if I’m vegan or not. And if I say no, then she’s going to be like, “Well then that’s what you have to do.” And mind you, I went vegan for about three or four months. For the first month, it was great. And then it wasn’t great. And so it’s like, I’ve tried that, I’ve done that.
Brandy: So anyway, there’s the like, are you vegan? Are you not vegan? Do you take probiotics or do probiotics give you more bacteria if you already have too much? Do you take meds? Do you not do meds? It’s so exhausting. That’s one of the parts, like if somebody told me, and this is always what I’m looking for, is if somebody told me, “Here’s what you eat, here’s what you don’t eat, here you take these supplements, you don’t take these ones,” and I felt better, I would do it. I don’t care how awful it is. I don’t care how joyless the food was, I would do it, but nothing actually gives me any sort of consistent, positive effect.
Monica: As far as conflicting advice. Ehlers-Danlos is the ultimate with that because if you dislocate, you think, “I should have a brace on that,” but if you brace it for too long, you lose muscle and mobility. So there’s this big argument on whether you even brace a dislocation. Now, if you don’t have connective tissue that works, you really need muscles so the muscles will hold the joint in place. But what do you think happens if you exercise?
Brandy: It tears them or it makes it worse.
Monica: Or you dislocate. Everything about Ehlers-Danlos is nonstop conflict. You can’t stay in bed for too long, otherwise your POTS gets worse. But if you walk, you might dislocate your ankle and be back in bed for longer. It is a nonstop tightrope walk.
Brandy: Exactly. And I think my fear is that there’s this thing, like there’s this magic fix and I just didn’t find the right doctor or they just didn’t see it or that it’s so obvious that after I die, they will do an autopsy and they’ll be like, “Oh, well didn’t anybody look? Her liver was mal-positioned.” Or something that’s just so simple and that I never found it, but I realize the insanity that I’m putting on myself by trying to look for that thing.
Monica: Okay, let me just float an idea to you. Do you ever worry that your husband wasn’t the right person? That maybe there is this perfect one soulmate out there and if you just found that one soulmate, everything would be perfect? Or have you been like, you know what, this is a great marriage. This is a great person. This is what we’re doing right now. I think it’s pretty similar. I think we can drive ourselves crazy about every decision from, do I have kids? Do I not have kids? Do I get married? Did I marry the right person? I don’t think that this question is any different of did I find the right diagnosis because there’s just a certain point where you could just chase your tail into eternity.
Brandy: That’s what I’m doing, Monica! (laughs) Yes, that’s how I’ve chosen to live my life! And then here’s another layer I want to ask you about, the motherfucking period that arrives every month that it’s like just when you feel like maybe you can live, and then all of a sudden – like when I had this digestive episode that weekend, I’m like, “How am I going to get on this airplane? How am I going to be able to not be in my comfort zone and be having all these issues?” and then my period drops and it’s like, “Ahhhhhh, level up, bitch! You thought this was hard?” Does this happen to you when you’re at your lowest and then you get your period and you’re like, how could this get any lower? Or are you one of those people who has a fine period?
Monica: What about me do you possibly makes you think that my body goes, “No, we’ll give you a break on that?” (laughs) “Coast, you’ve done enough.”
Brandy: Yeah, I didn’t think so, I didn’t think so. (laughs)
Brandy: Well, and I worry too, this is that unhelpful mindset, but I think to myself sometimes when I’m on the downswing, if I’m like this at 35, 40, 42, what the hell am I going to be like at 60 and 70 when my body is really aging and then I just, I mean I get in this really dark place of I’m not going to be here. I am not going to live long and I get this thing stuck in my head of my time here, I don’t know that it’s going to be very long because I don’t know how I could live like this while my body’s also aging and that’s super dark. And then my son will say something like, “But Mom…” I mean I don’t say this in front of my kids obviously, but when we’re talking about my health stuff, sometimes my son will be like, “Mom, maybe a 3D printer can print you a new ileocecal valve!” So it’s great to think that we’ve got this technology that’s hopefully improving (as it’s also simultaneously ruining us in certain ways.) It makes me feel hopeful that maybe by the time I’m 60, there’ll be something that can actually help. But I also think that expectation will set me up for massive disappointment so I also don’t want to do that.
Monica: And the question is this, will we be able to afford that technology? Will that technology be available to everyone to be able to benefit from? That’s a big question.
Brandy: Yeah, exactly.
Monica: You said about the aging thing and we talked about travel and since I’ve been really sick since I was eight and I’ve almost died a whole bunch of times from other secondary things, I’ve always just had this idea that this time is super limited, so go to the fucking wall. Do not wait to do shit. That’s why I travel, even though it’s probably super ill-advised and it’s desperately uncomfortable, it takes me so many months to recover from each little thing I do. I do it because I don’t know how long I’m going to be here and I also don’t know how long I’ll be even this functional. I’ve had a lot of luck that the people in my life who have gotten very sick and have died or become bedridden, they’ve given me an amazing template for how to live this life and how to keep moving forward with it.
Monica: And my husband has a much lower risk tolerance than I have and he’s always waiting for things to be ideal and perfect to do stuff and traveling was like oh, we’ll do it someday. We’ll do it later. And I had had a different dear friend who had traveled. She’s like, “You’re an artist, have you never gone to Italy?” And I’m like, “We’re waiting. I have a small child. I am running a business. I don’t have, I can’t just go.” I didn’t even have a passport. And then a few days before Christmas, she and I used to get together at least once every month, if not every week, to just kind of go over motherhood and running businesses. She ran one herself and her fiance called me up and he came up on her phone. So her picture showed up on my little iPhone and I was like, “Oh, we haven’t gotten together this month. Fuck, I’m a bad friend.” And he’s like, “Yeah, this is her fiance. She passed away last night.” She went to bed with a headache and she died that night. So for Christmas-
Brandy: Oh my God, I cannot put this on the podcast because everybody’s going to be like, “I can’t go to bed with a headache!” (laughs)
Monica: I don’t know. Maybe you might want to because what happened from that was I had always had this certainty of you go to the wall, you do it. But I’d never pushed someone else to go to the wall too. I always felt like I’ll go to the wall, I’ll take risks, but I’ve never dragged someone with me before and when she died that suddenly, I was like, “Yeah, I know you’re scared to do this, but this is literally all I want for Christmas, my birthday, anything else. I want my passport. I want your passport and I want you to schedule a trip overseas. This has to happen. I can’t wait for it to be perfect for you. I can’t wait for you to catch up to me. Otherwise, it might never happen and I’m not willing to leave this life not doing this.”
Brandy: Wow. You are giving me major inspo for my trip that I have coming up because I’ve been like… it’s that thing again where I ask myself do I stay in my safe place and then at least my nervous system isn’t taxed and that’s good? But then also I don’t know want to live like that. I want to go to the wall. So yeah, you’re giving me some things to think about in terms of that for sure.
Monica: I think you and I are pretty similar in what we do does not necessarily affect the outcome of our body. Our body just kind of does whatever the fuck it wants to do whether we’ve eaten perfectly, lived perfectly, it just has its own temper tantrums. So I mean even if you have to go and buy Poise, and Depends and…
Brandy: Pull Ups, Dora Pull Ups. (laughs)
Monica: What do you want to exit this life saying you did and will you feel better home in bed or you’re going to feel like this anyway no matter what or would you like to be standing at the Coliseum?
Brandy: But I actually love my bed. That’s how low… you give me those two things and I’m like, “Well, I’d like to be in my bed looking at pictures of the Coliseum! (laughs) That sounds nice.
Monica: I needed the travel, I needed the shake and the wake up. Maybe that’s not what you need. Maybe it’s something else that you need.
Brandy: No, I appreciate that.
Monica: It’s going to be different for each person, what shakes you up and inspires you and makes you look at your life a little differently and maybe that’s not travel for you. I do have to say last time I traveled, they almost re-routed the plane and landed because they were scared I was going to die on the plane and the stewardesses were all in conversation. I’m like, “No, trust me, this is not abnormal for me. I will not die on you. I promise. I realize I am gray and green and my heart rate is 40. This is not abnormal. Just get me some salt and some water. I will perk right up. I promise I won’t die.”
Brandy: You’re like, “Everybody on this plane, we’re going to the wall. I’m taking you all with me!” (laughs)
Monica: “All of you are coming with me, God damn it!” I knew I was not going to die, and so I had to convince the stewardess. I swear I’m not that person who would put everyone at risk, but I did have to talk to the flight attendants. I talked to them and was like, “Hey, I promise you I’m not going to die. Please don’t reroute the plane. Just get me salts.” And that’s the other thing about living here in the United States is a lot of us with these conditions, we wear bracelets on our arm that say “do not call an ambulance” with our protocol to make us wake back up if we pass out because it would cost me $4,000 after insurance pays for whatever they’re going to pay for. I have to pay out of pocket for an ambulance to take me to the ER.
Brandy: Oh my God. So you have that bracelet?
Monica: I am getting one made because someone told me about it. That would save me so much money because if I pass out in front of people, they’ll call the ambulance. And that will be very… Last time I had to travel in an ambulance, it cost me about I think it was $4,000 and it was for a two mile trip. I keep telling my husband we really need to consider living somewhere else because I will die because I didn’t go to the hospital. With the POTS thing, my heart rate goes different. An attack mimics a heart attack exactly. And even a trained cardiologist will need to run tests to see which one it is. But I can’t go to the hospital each time that happens because after insurance pays, I’m still on the hook for like 20% of whatever that is, which will be in the thousands. So I can’t go. I have to just hope it’s not a heart attack. And there’s… I’m certainly not the only one in this boat. We have people dying because they can’t afford insulin. Ughhhh.
Brandy: Okay in closing, one of the things that I wanted to ask you about was with what I have going on, one of my strategies is I do things early so that in case I need to eject myself from my life I can and everything doesn’t fall apart. So examples of this are things like I do my Christmas shopping, I usually start in October for the kids so that I have it pretty much figured it out by beginning, middle of December at the very latest, so that if I all of a sudden get sick and can’t be a human for a couple of weeks or a month or whatever, the magic of Christmas isn’t lost. Things like Thanksgiving, last Thanksgiving I think we ordered a meal from Whole Foods or something like that. And it turned out I got E.coli because of my gut stuff, cause I don’t have the right microbiome and whatever bullshit. So I got E.coli. So I basically ejected myself from that and Thanksgiving wasn’t ruined because it was reheating things. So I do these things and I don’t go overboard. I’m not somebody who can be really extra with that kind of stuff, like crafts and homemade stuff. I just try to get the bases covered and it’s not going to be perfection and totally polished and stuff with those kinds of things in my life, but I’m wondering, do you do those same things or have you just been like, fuck it, I’m not doing any of them?
Monica: (lightly laughing) So here’s the thing and-
Brandy: You’re laughing at me… (laughs)
Monica: I’m actually not laughing at you. I’m more just like oh man, I want to hug you. I just want to give you a hug. Yeah. “Fuck it” is a self care. It absolutely is. And here’s the thing, in this amazing world of Pinterest and YouTube as everyone is convincing us that we need to create magical childhoods for our kids, childhood is kind of magical on its own and we need to let them be magical. We need to not step in and tell them what magical looks like and is. They can make that themselves. They’re really good at that. I really just have to trust in the fact that my main goal for my kids is that they knew they were loved, they knew they were accepted by me, they knew how to be good people and kind people and empathetic people. And the rest of it I’ve just had to go that’s not on my radar. If it happens, that’s great.
Brandy: Yes. Well, so will you let the listeners know how do they find you? How do they find your podcast?
Monica: So if you’re looking for my podcast, it’s invisiblenotbroken.com and if you are looking for my children’s books (it’s not as much swearing), that’s owlandtwine.com and on there are all of my illustrations, my kids’ books and also my podcast for kids – it should fit into a ride to and from school. It’s a history podcast on very unusual moments in history for kids. And those are no swearing at all, I promise. And there are weird episodes like the history of pugs or the history of carousels. So that’s also owlandtwine.com
Brandy: One of my favorite parts of today’s interview with you is that I feel like the tagline for it could be “Optimism, the silent killer.” (laughs)
Monica: Yes. Oh my God, I love you. Yes, please. (laughs)
Brandy: We’re walking away knowing that optimism comes in a shiny fun package, but it will kill you. It will cut your throat.
Monica: Like most shiny, lovely little things, it has a sharp edge. Yes.
Brandy: Monica, thank you so much for coming here and talking about your journey and the personal aspects of your life. I just so appreciate you.
Monica: Anytime. (interlude music)
Brandy: So I don’t know if you could tell, but I recorded this episode while on a downswing and I’m glad I did because had I been on an upswing, I probably would have been all annoying like “what you manifest comes to you.” But since I recorded this episode, remember that I was going to see the doctor that I had about 0.1% of hope for? Well, it turns out that that doctor gave me another pretty significant piece of the puzzle and for the last few months I’ve been doing a lot better. (knocking sound) Knock on wood. I’ve been getting weekly nutrient IVs, which seems to be helping and I finally really learned that I HAVE to take digestive enzymes and a certain medication that helps me process fats. I’ve taken those before but then gone off of them on an upswing. But now I really, finally understand that I always have to take both of those things my whole life. My health still isn’t perfect, but I have stopped chasing my tail a little bit. And isn’t it ironic that sometimes you have to keep chasing your tail in order to stop chasing it? I don’t want to say “make sure you try that new doctor treatment you were thinking about trying,” but also if you’re desperate like I was, why not?
Brandy: And I want to give a shout out to all the people listening who live their lives with any kind of illness, chronic condition, or disability – and especially those who raise kids while trying to keep yourself from falling apart. I bow down to you. And also, I am one of you.
Brandy: And just to remind you, Monica’s chronic illness podcast is called Invisible Not Broken and the website with her children’s books, art ,and kids podcast is owlandtwine.com. That’s O-W-L-A-N-D-T-W-I-N-E dot com.
Brandy: If you’re interested in links to any of the things that we talked about in this episode, or episode transcripts (perfect for when you’re stuck under a sleeping baby), you can go to the podcast website at adultconversationpodcast.com. And did you know that I have an Adult Conversation Podcast Discussion group on Facebook? Well I do! If you want to continue this conversation, or talk about other podcast episodes, just answer a few questions so I know you’re not a bot, and I will grant you access to all the over thinkers you could ever dream of.
Brandy: If you like what you’re hearing, please leave a review or rating in your podcast app. It helps me so much! And a quick shout out to all my Patreon peeps. Thank you for the continued support! I so appreciate you all, and if you would like to join this wonderful group of people, you can head over to patreon.com/adultconversation. That’s P-A-T-R-E-O-N dot com/adult conversation. As always, thanks for listening.