Chrystal talks crohn’s disease, autoimmune paleo, and trying to get your pain taken seriously.
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Transcript
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
This week I’m talking to Chrystal about her up and down health history that eventually lead to a crohn’s diagnosis. She’s the third person that I’ve spoken to with crohn’s, and it’s amazing to me how different all of these stories are. Chyrstal is married to one of my cousins, and so while we’re talking we both use a few names without giving any extra context. I’m sure you’re smart enough to figure it out, but here’s a quick overview: Ian, who is mentioned often, is her husband, and their son’s name is Chase.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
[guitar riff]
Brianne: Thank you for talking to me, I’m super excited! And I know little pieces, but I’m also kind of excited to hear this super fun chronic illness story in chronological order. So this time, can you tell me were you healthy as a kid?
Chrystal: Um, no. I was, off and on always had stomach problems. I was hospitalized at 13 because, funny, they couldn’t figure out something was wrong with my stomach. And I had pain every time I ate. And then I went to the hospital and my white cell count shot up in the hospital after my mom had taken me everywhere: naturopaths, this, that, what’s wrong? Why is there pain every time she eats? And I went to the hospital at 13. My white count shot up after I ate, they rushed me in for emergency surgery and took my appendix out. But there was nothing wrong with my appendix.
Brianne: Sure.
Chrystal: They did a full bowel exploratory. And they’re like, “We don’t know what’s wrong.” And then a couple months later, they found something in my stomach that is only usually found in infants. I got some meds and I got better, but I always sort of had a touchy stomach, but it just became my normal. Anxiety and kind of a weird stomach. But that was just me. You don’t think anything of it, because that’s you.
Brianne: Right. Yeah, yeah, definitely. I think that’s part of it. Especially when something happens when you’re young. You don’t have any other context for it. Totally. Okay, so that was at 13. And then when you say touchy stomach, did you become like… did you start adapting? Were you eating differently? Were you… I don’t know, going to the bathroom or what did that look like for you day to day?
Chrystal: For me, I always had a stomach ache. It was like I always had anxiety pains in my upper gastric and in my diaphragm, so I needed to push my diaphragm down. And I always assumed it was anxiety. But now I get that the two are kind of linked, that I could have a stomach ache from anxiety but you can also have anxiety from having a poorly functioning stomach. So it kind of always went hand in hand. So I think sometimes people just thought I was neurotic. But I had a stomach ache if I was upset, or I had a stomach ache at school and it was like, “Oh, you know, is it in your head a little bit? Did you just upset yourself and make yourself sick? Or do you have anxiety?” Because you don’t absorb nutrients and because your stomach is off, so your thyroid is off and your B12 and your iron are all off, you know what I mean? It was what came first, the chicken or the egg? Are you upsetting yourself and getting a stomach ache, or do you have problems with your stomach, so therefore you have some anxiety and depression? And then in my 20s, I just blew it all off and partied. And it was like, “You feel like crap all the time. That’s pretty normal.” And then I got older and started investigating and being like, “Well, I’d like to not feel like crap a lot of the time.” So you go through those spells where for six months you’re like, “I feel awesome. I’m great. Everything feels good.” And then you’re back to “Something’s just not right. But that’s just… I’m usually like this.” So it becomes okay.
Brianne: Yeah. And I feel like this is a theme too that in your 20s you kind of notice that maybe it’s not the same as other people’s body experiences. But you’re also like, “I can still push through it.” And then at some point something happens where you’re like, “I cannot pretend this isn’t happening anymore.” Like my body has stopped putting up with this crap.
Chrystal: Yeah, “I can push through it” becomes your normal. You’re like, “Yeah, I can push through it. And I’m totally fine.” But you’re not. You’re not totally fine at all. So yeah, I don’t know. I can’t… I don’t know. I don’t understand how we always just thought that that would be okay. “No, it’s all right. I’m going to be fine soon.” And then you’re just not, so…
Brianne: Yeah, that’s so really. And so what was the turning point like for you? Of like, “Oh, well, I just kind of feel crappy all the time. Maybe with some ups and downs.” And, “Okay, I have to seriously investigate what’s going on.” So you were going through your 20s and you were managing, and then did anything happen that made you want to confront it, or was it just kind of growing up? Like, was there a crisis or was there a decision?
Chrystal: There was a crisis around I want to say 26, 27, where I was extremely fatigued and I was working on cruise ships at the time and I actually went home and recovered for four months because I could not get better, which I know now. I recognize the feeling. It’s the glands, it’s the aching, it’s the soreness. But I could have been having… some people have a crohn’s issue or flare without having the diarrhea part. Without having the upset stomach part where they go in and do a colonoscopy and they’re like, “Whoa! You’re full of crohn’s disease.” But at the time, I just presented like chronic fatigue or whatever. And I was a vegan for a year. And me being a vegan was also I ate nothing white. Like I didn’t eat grains, I didn’t eat… similar to how I eat now but I didn’t eat meat. And I ate no sugar, no breads. And it helped. I felt a lot better. I did a lot of supplements. I saw some nutritional people. Then I went back to eating meat and I slowly started, you know, having beverages again and started eating poorly, in my opinion. I don’t associate eating meat with eating poorly. I just started eating like normal again. I was like, “Well, I’m better!” That has happened two years ago, and then occasionally I’d get flickers of that feeling again. And I’d be like, “Okay, ease back, ease back. Cut down on the stress and the busy life.” And it would always creep back in. And I didn’t feel really terrible again until I was living in Fort St. John with Ian and working too hard, working shift work, working through the night. And it started with I can’t sleep and my stomach’s upset, which I now recognize is my body’s… that the check engine light was on.
Brianne: Yeah. Yeah. And what did you think? So, were you seeing doctors during that four-month flare? Like, had you gone to people and gotten…?
Chrystal: I’d been to a doctor and the doctor was like, “Ah, you’re tired! Yeah. You have chronic fatigue. You don’t look that sick. There’s nothing really wrong with you.” And it was like, “How is there nothing really wrong with me? Something is wrong.” There’s something wrong. I can’t get out of bed. I can’t do stuff. My glands are always kind of swollen. I always kind of have a temperature. Something is wrong. So that’s when I went to just natural medicine because they could at least work with something. And I did get to where I felt good. I’m taking iron, taking whatever, like getting better so I did do some work. And it worked. But then again as humans it’s like, “I feel good now, I’ll do whatever. Push my body to limit again. Let’s push the limit.”
Brianne: Yeah. “I must not need to do this anymore!”
Chrystal: “I’m fine now!”
Brianne: Yeah, that’s totally how it feels. Okay, so then you’re in Fort St. John and things were starting to flare up again, and it sounds like either some new stuff or some different stuff, so it’s not just fatigue.
Chrystal: Similar. Anxiety, depression, not sleeping. And I worked 6pm until 4am most nights. And I worked a lot of shifts like that. We worked like that through the night. And then I would, you know, you come home and drink a bottle of wine at four o’clock in the morning, go to sleep, you know what I mean? Then we moved from Fort St. John, we moved out here, and it was still kind of happening. But because I didn’t work for a while, I was laid off for six months when we first moved out here. My body kind of had a chance to recuperate, and I started feeling a little bit better. But then I got a job and started pushing, and then started having bad anxiety. And then before I know it, I was into the 2010 flare, which I now know was crohn’s disease, where I got very, very, very, very sick. Like I lost 40 pounds in the matter of a couple months and I lost my hair and stopped menstruating. Nobody knew what it was.
Brianne Yeah, yeah, which would be awful. A lot. It’s so… that overlap of like: I feel sick. It’s not being identified as an illness. What do I do? I can’t do anything. Nobody can help. Did you have a GP at that point? I also remember that you were looking for a doctor to even have someone to coordinate care.
Chrystal: I was out here for three years before I had a doctor. I couldn’t get one, I was on the waiting list. My current doctor, at the point when I got sick-sick, was on maternity leave in 2010 with her first child, and I couldn’t. I was bouncing between emerge and a walk-in clinic and just getting bounced around. And then by the time I got in with a gastroenterologist and got a scope, I’d already started getting better. I kind of had a flare. Summer was over. There was no tomatoes and raspberries, which I now know I cannot eat when I’m sick. All that stuff ended and I started getting better. And then I got a colonoscopy and they were like, “You’re fine. You probably just need to eat more fruit and vegetables. You’ll be okay.” And I’m like, “I stopped menstruating for four months. My hair fell out. Something was wrong.” “No, no.” And then I had a kind of magical time of health. Got pregnant and then had a super magical time of health while I was breastfeeding, where I was, like, the healthiest I’ve ever been.
Brianne: So it’s really interesting to me. I’ve talked to only a few people so far. But I’ve also heard this, that a lot of people find that pregnancy itself alleviates a lot of symptoms. For whatever reason, whatever weird body magic is going on.
Chrystal: Well, a lot of people, it really does. For me, it was the discovery while I was pregnant. It was Ian, of course, so I didn’t want to listen to him, saying, “Stop drinking coffee and just see if you have peptic ulcers. Just see.” Because I was so sick during the first three months of my pregnancy with cramps and diarrhea. I was just so ill. And he was like, “Just see.” And I listened to Ian, begrudgingly. And I stopped. I ate a peptic ulcer diet. So I ate no citrus fruit, no coffee and no tomatoes or anything like that.
Brianne: Low acid.
Chrystal: Low-acid diet. And it made a huge difference. And I felt great through my pregnancy. And for me, the real miracle was breastfeeding. Like I had never felt so good in my whole life.
Brianne: Wow.
Chrystal: I slept good, I… everything was amazing. So I couldn’t… yeah, that was amazing. But it was within a year of stopping breastfeeding that I started getting really sick again.
Brianne: Okay, and then… so I’m just thinking through. So this is a much closer timeline of like, you had had your worst flare ever, you were losing your hair, you lost weight. And then yeah, stopping menstruating and losing weight are often super correlated. I have been through a part of that, as I think you know. Okay, and then it resolved kind of in the fall, we’ll say magically… I’m sure now you have a lot of sort of pieces that you’ve put together. But at the time, it was just like, “Well, that was a weird thing that happened.”
Chrystal: Yeah, I stopped… you know, I look back now, I stopped pushing my body because I was sick. I worked and I went home and went right to bed. I stopped fighting it. I stopped going, “Well I’m going to keep working out, I’m gonna keep running.” I just gave up and was like, “Okay, I guess I’m going to spend all my time in bed unless I’m at work.” Which if you don’t have a child, you can do that. And I think you know, the change in diet. I just kinda got better. I’m not 100% sure why, but crohn’s disease also does that sometimes. Sometimes you just go into remission. So I cleaned up my diet again.
Brianne: And then how long between that and pregnancy?
Chrystal: So I was sick for most of 2010. Then I got pregnant I was feeling really good in 2011. 2012 I got pregnant. So pregnancy of a year, you know, nine months or whatever.
Brianne: Right, however long it takes.
Chrystal: It feels like forever at the time! And then yeah, then I just felt good. I felt really good.
Brianne: Yeah. And then nursing?
Chrystal: I nursed for two years.
Brianne: And you felt good that’s probably good. The thing that scares me the most about thinking about having kids is those first couple years when I know you’re not really sleeping because there’s this little monster that’s crying all the time and needs to be fed. I can’t imagine… just because of how important sleep is. So if there was something else happening, I bet that was good.
Chrystal: You know, it was… whatever the miracle of your body getting ready for breastfeeding, you’re exhausted and tired. But I wasn’t… there’s a difference between being exhausted and tired and being sick from being exhausted. You know what I mean? The difference of like I was breastfeeding, I was up a lot and not sleeping, so you’re kind of tired. But when I slept, I slept. You know what I mean? The few hours, like I’d get four hours of quality sleep, be up for a half an hour to an hour then four hours of quality sleep. Whereas you know when you’re sick, sometimes you never get quality sleep. So it was different in that way that whatever the protection is of breastfeeding, absolutely changed everything for me. I was amazingly, like, exhausted and stuff. Like, I remember thinking, “I’m gonna fall asleep on my way to work. I’m so tired.” But I never felt that deep, sleepy, tired because I’d always kind of had anxiety, like, up at six or seven and always kind of on edge. Whereas I had deep, beautiful, coma sleep. Like I could sleep like I was in a coma every every time I needed to. And it was great. And I didn’t realize how good I felt until it ended.
Brianne: That’s how that happens.
Chrystal: Which is unfortunate. I was like, “Oh my gosh!” Like, six months after stopping breastfeeding, I was like, “Oh no, this thing’s happening again. Oh no, I’m starting to not sleep good.” And I was like, “You didn’t know how good you had it!”
Brianne: Yeah. Yeah, I believe that. Okay, so two years, which is a good reprieve. Well, almost basically three-year reprieve. And then it starts to come back. So like, fatigue starts to come back, poor sleep. And then what else is going on?
Chrystal: Anxiety. Anxiety is kind of the precursor, which I now know is related to gut health. Right? When your gut health is failing, your brain’s not getting what it needs. And for me, that should have been the indicator. And then I was trying to conceive again, and I was having bad anxiety. I was having stomach problems. And my naturopath said, “Can you take six months off and just reset your body? You’re having some anxiety. Your stomach’s getting kind of touchy.” I was putting on that weird weight around my stomach because I’m like, hyper all the time and addicted to sugar, and I couldn’t… I was trying to rein it in, and I was recommended that rest was my best thing I needed. But you don’t have time for that until your body forces you. You’re like, “No, I don’t have time. We can’t afford it. I’m not taking that kind of time off. It’s just not gonna happen.”
Brianne: And like, it feels lazy.
Chrystal: Rest… when you’re a doer, resting doesn’t feel like you’re doing something. Rest is so important to get better, but you’d rather be doing an actual task to feel like you’re accomplishing a thing to get better.
Brianne: Yeah. Yeah. Oh my god. To feel like, “I’m taking action.” I end up doing so many gut checks with Adam now, like on days when I’m like, “I think I’m just going to lie around today.” And I’ll be like, “Is that okay?! Do you think that I am just being lazy?! Am I misinterpreting?! Am I preempting something that’s not real and I don’t really need to do this right now?!” And he’ll just be like, “It’s fine.”
Chrystal: Like, resting is important. When did that get beat out of us? Resting is not lazy. There’s lazy and resting are two different things, but we always say, “Oh my gosh, I’m so lazy. I feel so bad.” You’re doing nothing. You’re lying around watching tv because, like, that’s sometimes all I can manage. Even reading hurts because my eyes get inflamed, so yeah, I always have this weird dry eyeball thing. That’s how this last flare started. I needed glasses, and I was trying to figure out what was wrong with my eyes. That’s funny, yeah, it was my eyeballs. But yeah, no, resting. Resting is definitely not an activity we want to participate in when we’re on our quest to get better.
Brianne: Yeah, yeah. Being like a wellness warrior, which is something that I feel like social media has made even more like, “How can I be actively pursuing wellness?” And sometimes, it’s like… don’t.
Chrystal: Exactly. Don’t. Take a hot bath and lie in bed. Seriously. But we’re not programmed that way. I’m definitely not, and I know you’re not. You’re like…
Brianne: It’s so hard!
Chrystal: Yeah. Yeah. Like, “What’s a class I can take? How can I learn learn to be better at doing this?”
Brianne: Yeah. Oh my god. Yeah. I’ve definitely been like, “I’m taking a nutrition class! I’ve read so many books!” That’s real. So your naturopath recommended that you ease up and focus on rest. And you did?
Chrystal: A little. I did not take time off work, but I was being really good about being like, “Well, the house is dirty.” Because you come home from work and you do bathtime, bedtime, put your child to bed. And I was like, “Leave the house dirty, have a hot bath, read my book, get in bed.” And I got to where I was starting to feel the calm, I was starting to settle. I was getting better. I was taking a few supplements. I was eating really well, super clean, nearly paleo. But then the minute I felt okay, I ran out and went to a zumba class and then I went back to the gym. Within a week, I was sick again. And I told my naturopath, I said, “I nearly had it! I was nearly well!” And she said, “Chrystal, it doesn’t matter if you get well if you don’t change the behaviors that got you sick in the first place.” And I was like, “Damn…”
Brianne: You’re like, “Well I don’t know about that.”
Chrystal: Because that’s a bigger thing. Changing behaviors is way harder. And then I never… it was a steady, slow downhill from probably all of 2015 until the spring of 2016 when I started getting really, really sick.
Brianne: Okay. And so then it felt more like crisis mode again, it sounds like.
Chrystal: It went into heavy crisis mode. So in the fall, I started having problems with my eyes where I could hear myself blink and my eyes were always stuck together and it hurt and it felt like there was spiderwebs in them. And then my stomach was getting where it was worse, and I was back on a peptic ulcer diet. And I was trying to rest and sleep and my eyes were bothering me. And then we went… my husband’s dad took us to Australia for a couple weeks over Christmas and January, so that was hard on the body. But I was pretty good, like I barely drank any alcohol, I tried to be good, but everyone’s like, “You need to rest.” But you know, I’m going to go on a vacation in Australia with 15 people. Even though you intend to rest, you don’t rest. There’s five kids in the same house, ten adults. Even when you’re resting, you’re doing stuff. So and then the jetlag, we get home in the middle of January. By the middle of February, I was like, “Oh, I’m having a hard time eating. I think there’s something wrong with my stomach.” I remember I got glasses in February and they said, “Well, your eyes don’t seem that bad.” I was like, “Why do they hurt so much?” So I went to an optometrist and they said, “Well, you’ve got a mild prescription, but get some eye drops, your eyes are just dry.” And then in probably the end of February, beginning of March, I started having to blend and puree my food because I was so afraid of going to the bathroom because I have proctitis when I get crohn’s disease. And from then I went to work one day and I was like, “I’ve got to go back to the doctor. There’s something wrong.” I went to the doctor at lunch on March seventh I want to say, and I never went back.
Brianne: Your GP?
Chrystal: Yeah, I went to her. I’d been there a couple times for the proctitis issues and the pain. But I was like, “I can’t even eat. I’m so sick. And my butt hurts.” And I went in, went to the doctor’s that day, I went at lunch time. I couldn’t go back to work I was in so much pain. And I never went back to my job again. That weekend, I screamed and cried all weekend from the pain and the damage that was being done.
Brianne: And you still didn’t know what it was from.
Chrystal: No idea. I just knew that my butt hurt and I would scream in pain every time I went to the bathroom and I couldn’t put a toothbrush in my mouth or think about food without having a bowel reaction. It was so strong. And Ian and Anne were like, “You need to go the hospital. Let’s go to hospital.” Chase went to a friend’s for the weekend. I was in the bathtub crying all the time, and I was like, “I can’t go the hospital.” Because I was too sick to sit there.
Brianne: Like waiting?
Chrystal: My belly was so bad that I was like, “I don’t want to have diarrhea and I can’t go!” So I showed up at my doctor’s office, she’s so great. I just showed up there Monday morning and was like [whispers] “I need some help!” And she took me in first patient, and she loaded me up with different antibiotics in case I had an abscess, she loaded me up like, percocets and prednisone. She just gave it all to me and started trying to get me into a gastroenterologist. Actually, we’d been trying to get me in for a scope before that already. But it was in super duper crisis mode then.
Brianne: Yeah, and then just for my own memory, you said after the previous long flare, you did have a scope, but they didn’t really find anything because you had already…
Chrystal: Looked great.
Brianne: Yeah, you had started to recover, so there was nothing to see. Okay, so this time you were trying to get a scope again. And like… not functioning.
Chrystal: No. It was really bad. Like the Monday… honestly, prednisone is like we love to hate it. I took one dose of prednisone and I’m telling you, 30 minutes after I took that dose, I was like, “Ahhhhh.” So I was also taking percocet so that may have helped too. But the prednisone for me, I’m so it lucky works well, but I wasn’t getting better fast enough. And my doctor said, that was Monday, and she said, “Come back Thursday. If you’re not better by Thursday, I’m going to send you the hospital.” I got there Thursday and she said, “You need to go the hospital.” And so she sent me to the hospital with a note, she said, “I don’t know if it will do any good. But you need to go the hospital, you need a CT of your rectum. And when you see what’s going on, we’ve got to get you in with the gastro. We’ve gotta get you scoped. We have to do something here.”
Brianne: Like, “Something is happening, and we are going to actually test it now.”
Chrystal: Yeah, it’s bad. I got to the hospital and they were busy, and the doctor that was in the emerge was like mad and he was walking around going, “You can’t do this people! We’re in code orange and I just can’t blah blah blah.” And he’s like, “Well, it looks like you have a fissure or something.” And I was like, “I don’t think you get how sick I am! I’m in so much pain!” Like I was having proctalgia, I know what it’s called now, it’s called proctalgia. It’s like having a charlie horse of the bum. So that was happening to me constantly. So it would literally happen. It was like getting struck in the bum by lightning and my knees would crumble, and I’d just buckle to the ground. I was like, [squeals]. So he’s like, “Yeah, yeah, yeah. Well, we can’t do anything because we’re in code orange.” And he was really mad. And then he talked to Dr. Ready, and he said, “Well, I talked to him. We’re going to give you nitroglycerin cream for the pain.” Nitroglycerin cream to put on. And I was like, “But it’s inside! Nobody understands!”
Brianne: How am I going to put that there?
Chrystal: Somebody help me! So then I walked out of emerge. Ian’s like, “Come on.” And I was just was crying. I felt so not listened to and not heard. And I was sobbing. I remember Ian guiding me out of emerge and I was just sobbing. I was like, “Nobody’s [gulps] going to help me!” Ian said I was just a sobbing wreck walking through the hospital. I remember Ian being like, “Oh my gosh, she’s crazy.” And we got in the car and I phoned my doctor’s office and she was furious. Code orange, I guess, means there’s been a like a bus crash or building explosion, and they’re having an explosion of patients. But she was like, “Well, what’s actually happening in town? Why are you sending people away with code orange? My patient needs a CT scan. Something’s wrong.” And they were like, “Well, we’re just so busy.” And she said, “You can’t just send people away because you’re busy. If I send someone to the hospital, it’s because I think there’s something wrong.” It was bad. It was bad. So I called the gastroenterologist. She called the gastroenterologist, and they were like, “We’ll get you in for a scope in a few weeks.” And I was just like, “Oh my gosh!” So I phoned them on Friday. I let all my pain meds wear off Friday morning, and I said, “You get me an appointment or I’m just gonna sit in your office and cry all day in front of everybody!”
Brianne: That’s good. I like that. That’s real though.
Chrystal: They called me back and were like, “So we’ll see you at two on Monday.” I had no, I was like, “Somebody needs to help me.” And, like, I went full crazy, let all the pain out. And I just was like, “I’m gonna sit in your office and cry the whole day until somebody helps me.” So he saw me Monday and he was like, “I’d scope you tomorrow, but I don’t have somebody that can put you completely under until Wednesday. Because I think you need to be 100% sedated for me to do that.”
Brianne: So it’s going to be really rough.
Chrystal: Yeah. So he did it on the Wednesday, finally, after my my crazy tactics worked.
Brianne: But like, it’s so impossible. I feel like there’s this… It’s something that comes up a lot when I’m talking to people, is one, crying and doctor’s offices, but two, the opposite of that, of trying to seem really business-like to be taken seriously. And it’s like nothing… There’s no right strategy.
Chrystal: If you look too good, like if you do your hair or your makeup and think, “I’m really gonna look professional so they take me seriously!” And then they’re like, “Oh you just look well.” So they just don’t care.
Brianne: Yeah. You’re fine. It must not be that bad.
Chrystal: Or you’re a psycho.
Brianne: Yeah. And then when you’re like a crying mess, it’s the other side of the spectrum where they’re like, “You’re hysterical and you obviously just want pain meds.” You’re like, “No, I want to not be in pain, and I actually don’t care how it happens.”
Chrystal: “You tell me what I need to do and I’ll behave that way, but I’ve used up everything in my arsenal.”
Brianne: Yeah, yeah. I just don’t have a plan and it should be your job to give me one. Yeah, it feels like a lose-lose. Okay, but so you got in. That’s good.
Chrystal: I did! I got in, I got my scope. And yeah, I’d been on prednisone. I’d been on a lot of prednisone for nine days and I was still full of big, deep ulcers in my colon. So he said, “I think you have crohn’s disease. So we’ll send you away and see what happens. We’ll send you fwith your prednisone. And if you get sick when you wean off the prednisone, well, then we’ll have to put you on something else.”
Brianne: So then was that the official diagnosis, or did hey do more?
Chrystal: It was still their best guess.The think it was crohn’s or it was like an event, right? If I’d had that happen, and I never got sick again, maybe that was fine. But if I stayed sick after the prednisone, maybe it was crohn’s disease, like they didn’t know. They said they needed to do more, and it was if I responded to this drug or that drug, then they would see whether or not it was crohn’s disease. So as it was, I changed te a paleo diet to try to help. And then eventually, the autoimmune paleo diet, which really made an impact painwise. But still, as soon as the wean from the prednisone was starting, my stomach would start getting loose again. Things would start coming back as soon as I would get to a lower dose of prednisone.
Brianne: Okay. And so that was about two years ago, is that right?
Chrystal: It was the summer of 2016.
Brianne: Okay, so from there. So after the scope, after the ulcers, after testing out what happens with prednisone, what happens next?
Chrystal: Next was they started me on imuran in May. It’s an autoimmune suppressant because as soon as I stopped taking the prednisone or slowed down, I started getting sick again. And I was really against it because I was trying to have another baby. So I didn’t want to take a drug that I couldn’t get pregnant on. Which, you can’t get pregnant on the imuran. So, but Dr. Pella put it to me that, “We also can’t let your bowels explode. So you could perforate your bowel by hoping you’re going to get better. So maybe you’ll be better in a year or so. And, you know, we’re just closing that door right now.” So I started the imuran, but because they take, like, six months to work, I was on repetitive courses of prednisone trying to keep me well. So it wasn’t until I would say October of 2016, I started getting a little bit of relief, and I kind of started feeling a little bit better. Like I started, you know, going to yoga. I was doing the autoimmune paleo protocol. I was eating carefully, going to yoga, and I started feeling better. And by Christmas that year I thought, “Okay, I’m going to be able to go back to work in the spring. I think I’m going to be okay.” And then everybody got sick and got colds and all that. I did not. I was the only one that didn’t. Because I don’t drink, I don’t eat sugar, I eat very, very specifically. And everybody else was drinking and whatever, and I was patting myself on the back for not getting sick.
In January, I got strep throat. And then a month later, I guess two weeks of treatment and then two weeks of recovery, and then I had strep throat again. And that happened four times in a row, which I hear is fairly typical for some people with imuran. Just whatever lives in your body from having strep throat infection and being bombarded with… I’m all for medicine and antibiotics when you need them, don’t get me wrong. But four times in a row over four months, the antibiotics… I never got my energy back. I couldn’t… and I was in a lot of pain. I had a lot of hip pain and joint pain. So even when my stomach was feeling well during that time, there was so much joint pain that I was being sent to a rheumatologist as well, to try and rule out lupus and other things that were linked because we couldn’t figure out why I had so much pain. It could partially be drawn back to some of the drugs I took. I took cipro when I very first got diagnosed in conjunction with prednisone. And in the States there’s a black box warning about cipro destroying your joints when you take it. Ciprofloxacin, which is usually used for UTIs, it’s such a gun blast, but there’s like a black box warning when you take it in the States about neurological damage and tendon damage and cartilage damage to your body. That’s also increased if you take it while you’re taking prednisone. I was taking high doses of prednisone and cipro, and I was like, “Maybe there’s damage from that.” So then I’m seeing orthopedic surgeons about my hips. I’m seeing rheumatologists. I’m seeing everybody, and I’m just having pain, but no more diagnoses, nothing different other than pain, that maybe it’s from the imuran. So they eventually took me off that drug. They took me off that drug in the summer of 2017. Okay, so they took me off that drug, and then, yeah, I was taken off of that, and I seemed to be doing… I was coping okay with my diet and still no energy, still pain. But I was making it without the imuran. Fairly well.
Brianne: So mostly like: rest, AIP as your primary…
Chrystal: Yeah. And I was at the point, I couldn’t do yoga, I didn’t do anything else because anything else would just wreck me for days if I did too much. And you know, when you live in that fear of getting sick again, like I knew I wasn’t on autoimmune suppressants and I was treated for h. pylori as well. Because when they’d done the endoscopy, they found h. pylori in my stomach and the treatment was awful for that. And that was in September of 2017. But I’m telling you, I’ve never felt so good in my life as when I was treated for that.
Brianne: Really, like the impact of that?
Chrystal: Yeah, the two weeks while I was being treated for it your mouth tastes like you’re sucking on pennies all the time, it’s terrible. But after it… and that September, I was starting to feel good and my dad passed away suddenly of a heart attack. So out to my dad’s funeral and all that stuff.
Brianne: Yeah, it’s a lot. Of course.
Chrystal: And I started having a health decline. Surprise! So then my health started to decline again in 2017 in the fall. I started having a slow decline of my health again, even though I was trying, with the stress…
Brianne: Well, you have two tools that you can use, and you’re using both of them. And yeah, there’s still more coming at you.
Chrystal: Yeah. Yeah. So that was a big one. So I started getting sick again, and it’s just… but I wasn’t terribly sick. You know when you just, you know, you’re just making it, right? And then April of 2018, I had a massive flare. So just this last April, it started with proctalgia, rectal pain. And then it just blew up from there to being a really bad flare again.
Brianne: And then so do you go to a gastro? Do you have a local-ish care team?
Chrystal: Well Toronto. But we do telehealth at the hospital, my doctor prescribed me the prednisone in conjunction with my gastro. So in April they put me on, because they didn’t really want to put me on prednisone again because I’m so sick after I take it even with a slow wean. It just makes… it’s hard on your body even though it makes you feel fantastic while you’re on it. Well, it does for me. It’s hard on your body so they were trying to avoid that. So I was taking rectal anti-inflammatory enemas for two months. It was good times.
Brianne: Ooooooh, that sounds fun.
Chrystal: It’s like romantic. Those, rectal cortisone foam. It was just horrific. That and trying to get it better that way. But after probably a week or two, I was getting to the point where I was super sick, upper gastro. Everything was going wrong again. So it was more booking for CT scans, booking for MRIs, diffuse abdominal pain, 50mg of prednisone for 30 days to try and get it to settle down. So it was another three months of treatment.
Brianne: Just getting back to hopefully baseline.
Chrystal: Yeah, and I eventually did in the summer. Got back to baseline and I put on like 20 pounds from being on steroids, which is good. It’s nice to have a buffer when you have crohn’s disease. And I felt like I had to sleep all the time. Like when I was with Ian’s step-sisters and I would leave them with Chase, and I would sleep for four or five hours during the day and still sleep all night. Like I just can’t get better. And then Thanksgiving of this year, I started flaring again. So that’s what they started… in the last flare in April, they started the testing to see if remicade would be good for me. So doing an intravenous autoimmune suppressant, a biologic. So I’ve done the chest x rays, the hepatitis tests, the tb tests and all of that stuff to see if they think remicade will work for me.
Brianne: If you’re a candidate?
Chrystal: If I’m a candidate for that. And then the flare started again, I had a bad flare starting at Thanksgiving, and I’m still sick from it. I haven’t started prednisone yet. I’m gonna try hydrocortisone and see if we can do that. And then I saw my gastro and in February he’s going to scope me and see what he thinks about doing the remicade. But in the meantime on my own, I’m seeing another natural health doctor in Burlington. I’m trying something called low-dose naltrexone.
Brianne: Which I have heard of, and I don’t know a ton about it.
Chrystal: So many people are having great things with it. I started taking it when I kind of got this flare under control on my own before I got in to see my gastro, I started taking really high doses of CBD isolate powder and it seemed to start… like for me when my crohn’s is bad, if I think about food, I get cramps. My stomach’s like…
Brianne: That connection is so strong.
Chrystal: Yeah, I went from the point where I was losing a pound today to the weight loss stopped for about a week. But I’m using $55 worth of CBD a week if not more. It’s not sustainable. And every time I cut down my dose, I started getting sick again. And I started trying the low-dose naltrexone, but I was so sick that I was like, “Am I having a reaction to the naltrexone or am I sick?” So I stopped taking it so I didn’t confuse the issues. Taking a new drug while you’re sick, you just don’t know what’s happening to you.
Brianne: It is so hard to correlate. You’re like, “This could just be happening.” And both ways. I think when you get sicker and also when you get better.
Chrystal: When you get better, you’re like, “What did I do?! Why do I feel good today?!”
Brianne: And it’s so easy to become superstitious about it. Like, “Okay, now I have to do all of these things in the exact same order every day, just in case!”
Chrystal: That’s so funny. Exactly.
Brianne: And it could be freaking anything! This is the thing that makes me nuts, as a person. And like, I’ve had a particularly good week this past week, and I just started on a new vitamin b complex, and I’m like…
Chrystal: “Maybe that’s it!”
Brianne: And you’re saying Thanksgiving, Canadian Thanksgiving, which was now, like, two months ago. But American Thanksgiving just happened, and there was a bunch of extra family stuff involved after Thanksgiving. So I had, like, three… I’ll call them like performative family days, very close together.
Chrystal: Performative family days! That’s the best way it’s ever been described.
Brianne: Yeah, because it’s like… and that’s with Adam’s family which is great, I love Adam’s family, and it’s exhausting. It’s like…
Chrystal: It’s still exhausting talking to anybody, like this is exhausting. It’s wonderful, but it’s still like you’ve got to sack out for a few hours afterwards because you’ve used up all of your energy.
Brianne: Yeah, definitely. And so I think I also had basically a holiday hangover for a week, so I’m like, “Am I feeling better, because I just haven’t had any of that stuff to do? I’ve just been at home. Or am I feeling better because I got some fun new methylated vitamins?”
Chrystal: Oh, you got the methylated b12?
Brianne: Yeah. I do have the mthfr mutation, so… I mean, it’s a complex so there’s a bunch of stuff in it. But I think the folate is methylfolate and methylated b12 and then whatever else is in there, there’s a bunch of stuff.
Chrystal: I take those too.
Brianne: Soo I don’t know. And it’s like, and it could be neither. It could just be what this week is like.
Chrystal: Yeah. So my new thing right now, because I was wondering what else could be wrong with me, so I’m on this thyroid and adrenal group. I love it because they talk about and they led me to, what are optimal lab values, right? You know, like your doctor, “Oh, ferritin. Anything between five and 272 is fine.” Okay, so my ferritin’s eight. And I read, women don’t feel good unless their ferritin is 70. And so my doctor is really good at going to the low-hanging fruit. Like my b12 is still in normal, but at the very bottom. My thyroid numbers are kind of in normal, but they’re off. So what if we get everything to optimal? That’s my new thing is chasing optimal. That’s what’s great about the new technology today is looking at our own lab reports instead of being told by a doctor, “Yep, you’re fine.” Now, I can go, “Well, maybe I’d feel better if I was optimal.” Let’s do the low-hanging fruit of getting optimal instead of me looking for some rare crazy disease. Let’s just get my body to where women’s bodies like to be, you know. But who knows why you have a good day, why you have a good week. I know, I know. And then you’re hopeful. It’s like almost the worst when you’re hopeful, you’re like, “[gasp] Have I just figured it out?!” Is this the end of feeling this way?!”
Brianne: “I’m better now!”
Chrystal: “I’m better now.” [laughing]
Brianne: Yeah, it’s so true. And the optimal lab ranges is such an interesting thing. I feel like that comes up a lot. That’s what functional medicine is about, they’re like, “Yeah, well, labs just give you their average range and different labs have different ranges. So those numbers aren’t super meaningful.”
Chrystal: They’re not. They’re only meaningful to a doctor, what they think is okay. They’re not meaningful at all.
Brianne: Yeah, so it’s a bonkers thing, so that’s super interesting. I agree. And now, also in this frame, it’s like Christmas is coming up. This episode will probably come out after Christmas, but Christmas is coming up which is like a whole…
Chrystal: I know, and my priorities, I want to be well enough that I can have just one Baileys and coffee. Because I don’t drink. I don’t drink coffee. Those things don’t agree with me. And they’re not… like right now, I don’t even want to eat because I’d rather be hungry than in pain. So I start my new meds next week, but I can’t start them until… I’m doing a big course from my functional, in Burlington I have this amazing doctor who’s a GP and a functional at the same time so he can write prescriptions and he can do all the other stuff. So he’s amazing. But I’m doing this course of three day stool sample. But I can’t take any steroids while I’m doing them. So I’ve gotta wait until I’m done that, and then I can start my steroids next week. And by Christmas, maybe I’ll feel well enough just to have one coffee, just like one coffee and Baileys. It shouldn’t… like it’s sad that that makes me excited. But I like coffee and Baileys.
Brianne: Yeah. Well and that’s the thing of the constant balance of being like, these are things that just bring me joy, but I recognize that my body doesn’t love them. And it’s like a physical health/mental health balance, I think.
Chrystal: And you have to have that. People are like, “You know you shouldn’t be eating that. That might make you not feel well.” When I’m going through a phase where I can eat things, and I’m like, “Yeah, but there’s got to be a balance.” I do feel like perfection is the enemy of progress. I don’t know how many times I’ve heard that because I’m like, “I’ve got to do AIP perfectly! I’ve got to do it perfectly to be well! I’ve got to be perfect in every way to get well!” Well, no, you gotta enjoy life a little bit, too, because then it’s just not worth it.
Brianne: And it creates dread.
Chrystal: Dread and stress. So if you’re like, “I’m gonna have a little bit of stuff I shouldn’t have today.” Like for me, that might be I’m going to eat, I don’t know, I might have a piece of gluten-free bread at a party, so exciting! Or I might have a decaf coffee with cream in it, on days when I know this shouldn’t hurt that bad, I should be okay. And people are like… like Ian is the biggest one because he hates to see me in pain. He’s like, “Oh, that’s going to make you sick.” And I’m like, “You don’t get that I have to enjoy stuff sometimes.” I enjoy AIP food. I enjoy paleo food. But those things that I love that I miss, once in a while, we have to still have them. We can’t live in this bubble. So you do have to enjoy it once in a while. What’s your treat?
Brianne: Oh my god. Well, so I’m having this weird situation right now that I have no explanation for, which is that one of my nostrils gets… like there’s something inside of it that gets painfully swollen whenever I eat sugar. I don’t know why.
Chrystal: That’s so nice and interesting!
Brianne: It started in July and at first I was just like… maybe I have a weird infection. Adam was like, “Maybe it’s a zit in your nose.” And that’s what I thought at first and eventually it went down. And we had just been at a wedding, and usually at weddings I’ll let loose a little bit. So I will drink. But I still don’t have gluten like, you know, I have my normal rules.
Chrystal: Yeah yeah, you know your boundaries. You know what you can survive.
Brianne: There’s like my at-home rules, which is mostly paleo. I’m not AIP, I’m not playing with that right now. But like mostly paleo. I don’t identify as paleo, but it’s definitely how I eat. And then my special occasion, rules which are like, stay away from gluten still because you know that one is not working for you.
Chrystal: Those are my special occasion rules too.
Brianne: But everything else is kind of fair game. But now, so I went to a wedding and then as soon as that wedding was over, the same place got aggravated again. I was like, “That’s weird. I don’t know what it is, but last time was right after a wedding. This is right after a wedding.” Like here are some common things. And then it went down again and then I was at a bridal shower, and the woman throwing it had gotten like four gluten-free cupcakes, in addition to a bunch of other cupcakes. And that’s the other thing about it, which is like people are so generous when they know that you have a dietary restriction, but often they don’t really understand it. And so if there are gluten-free crackers or cupcakes or whatever, it has been my experience that the host of the event will always seek me out and tell me at least five times.
Chrystal: “I have this for you.”
Brianne: Yeah, and it’s so nice. And it’s also like, “Actually under my normal bounds I don’t eat grains or sugar at all. And so whatever weird gluten-free thing that no one else is going to eat that you bought especially for me from a place of love I would prefer not to eat.” But so then I’ll end up like eating one, of course. So I had a gluten-free cupcake and they were good. And then that same day, it started again. And it’s painful and swelling and it’s inside, so you can’t really see it, but it’s like, in a way where even some facial expressions hurt. It’s super weird, and it takes 48 hours. So that was a long explanation of this weird thing that’s happening now. Which the takeaway is that it used to be that my special occasions included eating some sugar, and that’s out now, because I have continued to push it at least three more times since then, and it’s like…
Chrystal: You had to be sure!
Brianne: Yeah, and it’s a little bit swollen right now because I think somebody came over, same thing. One of Adam’s friends came over and he brought break’n bake cookies for them to make. And he was like, “I got something for you too, Brianne!” And it was wonderful, a gluten-free dessert. So I ate it. And then the next day I was swollen. So basically, my go-to, really spoil yourself right now, is Russell Stover’s sugar-free candy, which you cannot eat very many of because they cause GI distress. And so, I’m lucky because I don’t typically have GI distress. They’re like, so not an option for anybody who does. But I eat too many of those, I would say, as a person right now. They have a thin mint, and they have a little coconut bar, and it’s the same with the atkins treats actually. Atkins also sells treats, and this is like it’s not good food. I do not advocate for it.
Chrystal: No but it’s something when you want to have something that you don’t react to poorly. Like my treat right now, because I tolerate it a little bit, is I make rice pudding in my instant pot. So white rice, coconut milk and maple syrup and water. And white rice, I don’t normally eat grains, but white rice I eat when I have a flare because it’s benign and it helps my tummy and it gives me some raw energy, like there’s just a bit of something there that my body doesn’t have to work. And some coconut milk. You just want some sweet, just, I just want something sweet. I want a treat.
Brianne: Yeah. We also have, this is my other thing that I am eating probably too much of right now. I think it’s a local company that makes gluten-free, grain-free pizza. So still dairy, still very carby. But it’s all, I don’t know, tapioca starch and whatever else is in it, and you can buy them frozen at the grocery store, and it makes me very happy when we get them. Because normally, you know…
Chrystal: It’s a nice treat.
Brianne: Yeah, because most days we eat… I mean, I eat the same thing every day. But it’s like through the summer, and I just picked up the last one, we have a CSA, so it’s all locally grown organic vegetables. And then we buy our meat from like, a grass-fed meat place. I mean, you guys, do you guys still do cows?
Chrystal: Not since I got sick, it’s all too much work for Ian. We still have some of our own beef, but we’re getting to the end of it. Yeah, we try and do as much local grass-fed meat as possible. But again, it’s one of those things for us right now, it’s not always possible. So you just got to do your best. You just do your best. But yeah, it’s a lot of roasted vegetables and a meat. That’s my life.
I’ve lost you, just a minute.
Brianne: It says it will resume automatically. Can you still hear slash see me?
Chrystal: Yeah. We’re all good.
Brianne: Yes, that’s it. So the balance and then one more thing that it made me think of, because you’re mentioning how Ian can react to you seeing it, and I think there’s two parts of it. There’s like, one, the person who cares for you kind of directly. And in this case, I don’t just mean you. I also mean me and everybody else. This came up in another one of my conversations, too. She was like, “And it’s hard, because when I do that…” for her, it was with working. She was like, “And I really want to take on this project. But I know that if I do it, I’ll have to rest for two weeks after, and my partner will have to take care of me. And at that level, that’s not fair to him.” So there’s like balancing this other person. And then there’s also, I’m thinking about it with family events, people who know that you have been sick in the past, and then see you eating or drinking what looks normally, will also assume that it’s over. There’s like, I don’t even know how to describe it. But there’s this weird interplay with how other people perceive your level of health. I don’t know if this is making sense or not.
Chrystal: Oh, absolutely. People think that you’re fine. If I really get it together and there’s something I have to go to and I put some hair and makeup on, I rest all day so I can spend two or three hours out of the house. Everyone’s like, “You look so good! You must be fine now.” No, I’m gonna sleep for three days after being here, but you don’t want to be a bag and say that, but people do think you must be fine. It’s true, it’s the invisible illness. “You must be fine now! You look so good! You’ve put on some weight! Oh, I’m so happy you’re doing well!” And you’re like, “I’m barely surviving, but sure. Thanks.” And people mean well, it’s hard because everybody means well, nobody knows what to make of it. But, yeah, you go out and people think that you’re okay.
Brianne: Yeah. And it’s like you don’t, one, want to be like, “Well, actually…” because it’s not the point of the conversation.
Chrystal: Yeah, you’re a jerk if you’re like, “Well actually, I’m gonna pay for this for days.”
Brianne: Yeah, yeah. And I just wish, I guess that’s why I’m doing this as a podcast. I just wish that we culturally had more of an awareness and a script for that. Because I think it’s that people who haven’t experienced it firsthand, or secondhand we’ll say, like with a close friend or loved one, they really have no idea that this level of sick even exists.
Chrystal: No, no, I went into my work and my boss said, and that’s another thing that culturally bothers me, is where I worked and I think in a lot of people’s work, having good judgment isn’t appreciated. People just want stamina. If you work until… like I told my boss before this happened, I kept saying, “I’m not doing well. I’ve got way too much workload. I need to deal with my stress better, obviously. But there’s way too much for me to do in a day. I’m not getting it done. I’m gonna drop a ball or I’m gonna get sick.” I got sick. And culturally, we value stamina over judgment. Like maybe if I’d used some better judgment and taken some time off, I wouldn’t have gotten this sick, but that would’ve been frowned upon at work. It would have been like I was just weak. You know what I mean? We do value stamina over judgment. And I went into work just recently and visited. And it was during this flare, and it was really bad. I hadn’t eaten so I could leave the house that day without being in pain. I’d had no food. It was two o’clock in the afternoon, and I kept being told how I looked the best I’d looked in ages. Well I was still carrying at that point some steroid weight. The last time he’d seen me I’d been cripplingly ill and for months, so I was very, very thin. “You look so good! I cannot believe it. You’ve put on weight. I can’t believe you’re sick, this is the best you’ve ever looked.” And I’m like, “That’s why I’m not coming back to work here.”
Brianne: Yeah. Yeah, it doesn’t… it’s not that simple.
Chrystal: How do we talk about it? And how do we teach people to talk about it with people that have an invisible illness?
Brianne: Yeah. Yeah, that’s what… this is one of the great questions of this undertaking.
Chrystal: Because unless you’re lying in bed, people assume that you’re okay. If you’re up and out doing something, sometimes I have to take my child places. But people assume, “Oh, you’re doing better now.” No. But I do have to… I’m not bedridden 24 hours a day, but I’m not well. yeah.
Brianne: And also like, talking about it honestly isn’t a play for pity or sympathy.
Chrystal: No it’s just real.
Brianne: Yeah, it’s like people… because they don’t know what it is or how to respond to it, I think it turns on a lot of listening filters when you’re trying to explain it to somebody. And they’re like, “Okay, I should be sympathetic right now.” And like, sure, yes, like empathy would be good, but I’m not telling you this for that reason.
Chrystal: No, I just want you to understand where I am. We just want to be understood where we’re at and that we’re not going to be fine tomorrow. And I used to go places and I’d be scared that somebody would see me because they would be like, “Well, Chrystal isn’t working. She’s too sick to work but she’s here?” Yeah but this is like the only thing I’m going to do this week. You know what I mean? I’m afraid of people seeing me doing something where I might be smiling.
Brianne: Yes. And it feels nuts to think that, and I absolutely agree and also feel that way.
Chrystal: Definitely.
Brianne: And then what do you think about work now? I think that your stamina versus judgment is spot on. And so, another big question that I have is what could work look like for people who are invisibly ill or chronically ill? What would your ideal or dream work scenario look like in terms of accommodations or whatever? Do you know what I mean?
Chrystal: Such a loaded question!
Brianne: Yeah, it’s hard.
Chrystal: Because I flip-flop all the time. In my mind, [laughing] I’m still gonna figure it out and be 100%, and I still haven’t fixed in my head what wants to be an overachiever. Like in my mind, if I can fix this adrenal thing and this anxiety thing and this brain thing and this gut thing, and I get it all worked out because I think I’m nearly there, then I want to go back to school and I want to be a doctor! Like, really, I can’t in my brain squash that part of me that wants to just be fine and do everything. And still in my mind, I’m gonna be fine and do everything.
Brianne: Like there will be an after.
Chrystal: Yeah! But realistically, in reality, I have no idea what it looks like. Like is it driving the bus part time, is it… I don’t know. I’m so… between feeling well and doing a million things and being nearly bedridden that I want to do some youtube video. I want to do some stuff, but because my whole life, and I think that’s the thing from chronically ill people, and we all learn so much about from all the podcasts, everything I listen to is people who are like, “I had rheumatoid arthritis and I treated it with AIP. I’ve had this. I’ve had that.” And because you become a professional almost, in your body and what’s happened to you, that the only thing that really interests me is health. Right now, that’s all I care about. And I don’t want to do anything I don’t care about ever again. I don’t ever want to invest my time in some crap I don’t care about, because really all I care about is got health. And there’s this meme, it’s a dude sitting on a chair, on a swing set, looking kind of sad, a man. And it says, “Me at a party when no one wants to talk about gut health.” That’s literally the only… a friend of mine sent it to me because it’s so me. I really only care about health and wellness at this point. I don’t know how to go back to work. I don’t know how to do work/life balance and it’s something I have to work on. I’m trying to do my meditate 45 minutes a day and blah, blah, blah. I don’t know that I can ever work full time and have work/life balance again because I’m not good at work/life balance. I want to get up and my go-to is to go 100 miles an hour, all day, all the time and do everything. And I don’t know that I can ever do that again. I want to, but I know I shouldn’t. And at this point, I don’t know Brianne. I do not know. And Ian says to not worry about it and just get better. Because I said, “I don’t know how I’ll ever go back to how I used to do life.” Because we were so busy with things, you know, Ian’s outside a lot, and I do all the parenting and the cooking and the cleaning and the dinner. And I said, “I can’t ever go back to that. I will never, ever be able to work eight hours a day out of the house and then be in charge of every single thing in the house. It just is never gonna happen again.” And he’s like, “Well, let’s not worry about it until you’re well.” So I have to kind of put it… I don’t know. I don’t know.
Brianne: That’s okay. I don’t think there’s an answer. And I think one of the things about it, and maybe even the idea or the definition of work/life balance is when it’s like… One, I agree because I love talking about this stuff, obviously. But two, when preparing the food that I need to be well isn’t something that I can realistically do and then go somewhere else for eight hours. Like I need access to a lot of stuff because I can’t predict how I’m going to feel so I need to have all of the foods that I need accessible. And then also right now, I do a nasal rinse every day, I have a nebulizer for medicated crap to put in my sinuses. It takes sometimes half an hour to 45 minutes, however long it takes to flush. And I have an infrared sauna, I have a little portable box. It’s great and also weird, because just your head sticks out. But that’s, I don’t know, another half hour that I have to take out of my day at some point, plus warm-up time, plus shower. Plus, sometimes that throws off my heartrate or throws something else off, and then I need to rest after my shower. Like it doesn’t fit into the same schedule every day. And so this thing that I used to do of, like: okay, well, I get up and I go for a run, and then I come home, and then I have breakfast and make coffee, and then I go and I get on the streetcar and then I get to work before nine. And then I’m there until five sitting upright, sitting upright in a chair!
Chrystal: All day!
Brianne: That’s what I’m going to do? And I’m gonna have all of the foods predictably that I need, when I can’t buy anything.
Chrystal: Everything I eat, I make. So the amount of time I spend on food prep, it’s just not realistic to do anything else unless I’m burning so much money that I could be paying someone to do hours and hours of food prep. And that’s what I tried this fall? Was it fall? Spring? This spring is I started doing paleo food prep for working moms. I was having a period of wellness and I thought, “This is my business.” And I started prepping paleo meals and delivering them to moms. Oh yeah, that was two weeks and then I was deathly ill. But people loved it. Working moms were like, “This is the best thing ever.” And even people that weren’t moms who were just busy women. Just women who are busy and who don’t want to sit and cut up a butternut squash and measure out everything and get it ready to make a homemade curry or blah, blah, blah, blah, blah, whatever. They were thrilled to have it, and I wanted to do it because that’s what I would like in my life. Because if I were to work full time, how do I prep all this food that I eat? Making sauerkraut, making kombucha, making whatever… you’re always cutting vegetables, your whole life’s cutting up vegetables.
Brianne: Yes, it takes a lot of time.
Chrystal: Yeah. And I can’t eat salad, I can’t eat raw. My stomach doesn’t like raw. So all you’re doing is prepping food. So how do you… I don’t know how that ever fits. I don’t know.
Brianne: Yeah, it has to be a part of it I think. Because I think you’re right.
Chrystal: I think women love having their careers, and I’m happy for everybody that can make it work. But I don’t know that we can be the caregivers, the cleaners, the grocery shoppers, the emotional labor people, everything, and work full time. I don’t know how. I don’t know how to do it. I know I can’t.
Brianne: There’s an integration required that we don’t know what it looks like yet. Yeah.
Chrystal: We’re still trying to do everything we were doing before we worked full time. But do it all and work full time.
Brianne: Yeah. Well, and with you guys, you kind of mentioned that Ian is outside, but you basically, like before, had full-times and also a farm. And I know it’s not like a giant, fully operating farm. But there were cows and there were chickens and there were vegetables.
Chrystal: Well there’s always something that needs to be fixed. There was always electric fence that needed to be fixed or posts that needed to be drilled, or a car that needs the brakes or the tractor, or the snowmobile… there’s always something that needs to be fixed outside when you have this kind of property and an older house. So it’s not that my husband’s not doing stuff, he’s just got a lot of stuff to do outside. There’s a lot. It’s not just that he shovels the driveway and mows the lawn. There’s like, my gosh, mowing the lawn here takes, like, four hours.
Brianne: Yeah. You have a lot of lawn.
Chrystal: Yeah, we have a lot of lawn and a lot of property. So it’s not feasible for us to share all the indoor stuff half and half because he’s doing stuff outdoors.
Brianne: Because that doesn’t add up to 100% of the work.
Chrystal: Not at all. Yeah, no, not at all. It’s crazy. So I don’t know. Work/life balance? I’ve got no idea. My ideal changes.
Brianne: Yeah, I don’t know that there is one, but I like to know how people are thinking about it because it feels like an important question.
Chrystal: Yeah, and I think there’s part of us all that want to go back to the way things were and be just fine. Like there’s that part of me that’s like, “Well, I just want to get my body where I can not wreck it but still do everything I want to do.” I still am stuck in that brainset.
Brianne: Well, and I think other people expect that like. It’s even small things. So for a while we were staying with Adam’s parents for like three or four months, I want to say, of this year. Like we moved in with them at this exact time in December last year to get out of the mold house. And we were going somewhere… maybe we were going to go visit friends overnight, and so I was packing just all of the stuff that I need to go do that, so it’s like my medication and my supplements and my protein powder and my… just all of the crap that lets me go into someone else’s environment. And my father-in-law was like, because I was starting to get better that’s why we were even doing this. And he was like, “Just think, soon you won’t have to do that every time you want to go anywhere!” And it’s like, “Oh, no. that’s…” I now recognize that that after does not exist for me. Like I can go somewhere overnight without bringing all of my junk with me. And it’s even little stuff like stevia so that I can enjoy my coffee a little bit more like, because I am drinking coffee right now. But if I don’t bring anything, what actually happens is I get incredibly…
Chrystal: You have something you shouldn’t.
Brianne: Yeah, I have something I shouldn’t. And also, I get really anxious about what I’m going to eat.
Chrystal: Oh, that’s a terrible feeling. You’re worried about it all the time. When we go away for the weekend, I usually have a cooler that plugs in in the trunk of my car. And I pre-cook all my food. I pre-cook my, you know, I have butternut squash with red cabbage, and I saute it in duck fat. And I have a container of that. I have a container of some other stir fry, I have little containers of food and my AIP buns or scones, and I have them all ready. So for me, going away for the weekend is three days of cooking before we go. And that, “Yeah, think one day you won’t have to do this!” Oh, I probably always will.
Brianne: Yeah, there’s a level of hypervigilance that’s just…
Chrystal: Because you do worry when you’re out and you might get somewhere and think, “I don’t have anything to eat. I don’t have anything to eat.” And like, maybe I’ll have some celery. I’ll just eat some raw celery at somebody’s house. And then you’re like, “Will it gave me a stomachache or maybe it won’t give me a stomachache.” Or then you’re so hungry that people are eating things you shouldn’t eat and then you have a bite. Just because, you’re so hungry.
Brianne: Yes, it compounds very quickly.
Chrystal: It does. It does. So being prepared is exhausting, but way easier. Like when I go to someone’s house, I have my own cooler of food. I’ve got my ridiculous amount of supplements, teas and things to make it okay. Like collagen and blah, blah, blah.
Brianne: Yeah, like I’ve always got collagen peptides. And I’ve always got electrolytes because those go, like a bunch of stuff happens with electrolytes, and I just need them. It’s just better to have them available.
Chrystal: Which electrolytes do you take?
Brianne: Right now, I’ve been blending up my own with Calm magnesium and then literally just putting in sea salt, I think we have himalayan salt right now actually, but you know, mineral salt of some kind. And then I don’t know if this is the best way to do this or not, but for potassium, I just buy NoSalt.
Chrystal: I’ve been using cream of tartar in orange juice. Cream of tartar is really high… I’ve been using cream of tartar. They call it in my circles an adrenal cocktail, but like cream of tartar, food-based vitamin C powder and salt, and you mix it up and drink it. But I guess that would be… I was hoping you were telling me you had an awesome pre packaged one that I didn’t have to make my own. That’s what I was looking for!
Brianne: There’s… I’ll tell you after, because I’ll look it up. I do have whatever my doctor recommended. Because he recently was like, “I think keto would be really good for you.” And I’ve been on that train enough times that I did not need his electrolyte recommendation, but he did recommend one from amazon. I don’t know what the price point is, but I’ll send it to you whatever it was.
Chrystal: Because, you know, making your own like… cream of tartar is a great for potassium in your elixir.
Brianne: That’s good to know, we just bought a bunch of it because I made… for Thanksgiving. I made the AIP rolls from whatever AIP cookbook I have. They’re root vegetable rolls and they’re so good.
Chrystal: You should send me the picture of that.
Brianne: Yeah, I will. I made them for Thanksgiving with my sister, like, two years ago. And now the last two years that I have not been there. She’s been like, “Please send me the recipe for those rolls again!” It’s from Sarah Ballantyne’s cookbook, I’ll send it to you.
Chrystal: Oh, is it from hers? I love her. Okay cool.
Brianne: Because they’re good.
Chrystal: The paleo mom.
Brianne: Yes. I have many of those kinds of cookbooks now, including Nom Nom Paleo, which I think I bought after you were like, “Please look through this cookbook.”
Chrystal: I love Nom Nom Paleo! I love that.
Brianne: At Whole Foods now they have her mushroom blend.
Chrystal: The magic mushroom powder?
Brianne: Yeah, because I never managed to make it myself, but then we just bought it. And I’m like, “This is the best thing ever!”
Chrystal: Is it good?
Brianne: It’s so good!
Chrystal: Okay, so I have to get it next time I’m at Whole Foods in Toronto.
Brianne: And Adam bought it. So I feel like it probably felt somewhat expensive, but also we still have it and I use it pretty generously, so it goes pretty far.
Chrystal: Yeah, but something that’s a little expensive that’s going to make paleo better and more… it’s usually worth it when it’s something that’s awesome.
Brianne: Yeah, and if you’re like… the thing is except for me and the Russell Stover sugar-free candy, there’s so much crap that I don’t spend money on anymore. That used to be like, cheap stuff. But whatever, even chips.
Chrystal: But there was a lot of it. There was a lot of cheap stuff, but then you’ve got… like my son’s lunch. There’s no granola bars or cheese, there’s no prepackaged food. It’s all chopped vegetables, fruit, meat and whatever. So some of the stuff I buy is more expensive, but I’m not buying a ton of non-expensive stuff, so I’m hoping it balances out.
Brianne: Yeah that’s my hope, that’s how I think of it.
Chrystal: Yeah, yeah, for sure, for sure.
Brianne: Yeah, that’s the stuff.
Chrystal: That’s the stuff. Send me that recipe, please!
Brianne: I will. I will. I definitely have it. Okay, so I think we should start to wrap up. You look ready. Is there anything else that you’ve thought of or that’s come up while we’ve been talking or in general, if you have anything else in your brain to get out, and if not, we are good.
Chrystal: I think that I got it all out. You’re very good at keeping people in track. So I got it out.
Brianne: Thank you! I like to actually think through the chronology because I know the worm holes that we go down trying to navigate this stuff change so much over time.
Chrystal: One hundred percent.
Brianne: So it’s interesting to think them all through.
[guitar riff]
Thank you for listening to episode 16 of No End In Sight! In the next episode I’ll be talking to somebody living through his second bout of post-concussion syndrome about how these experiences have reshaped his life, dating while chronically ill, and disability in politics. Make sure you subscribe on iTunes or Stitcher or wherever you get your podcasts to find out when new episodes are released.
If these stories are resonating with you then I’d love to hear your story! To learn more, just head to noendinsight.co and click “Share Your Story.” My stats tell me that my third biggest audience is in Australia, which is very exciting! I recognize that my interview time slots are probably not very accessible to people on the other side of the world, so if you’re in a wildly different time zone than me and would like to find a time to talk, definitely shoot me a message.
And don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s pretty small right now, but I’d love it to become a place where we share resources about building a business while prioritizing our health.
And finally:
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. I’m slowly working on my winter patterns, and I’d love it if you checked us out at digitalartisanal.com.