1 – Brianne

Brianne, a white woman wearing a purple scarf and red jacket, smiles at the camera. There is a stylized purple hexagon superimposed over the photo.

Brianne talks about her health history, toxic mold exposure, and the struggle to get a diagnosis for her chronic pain and fatigue.


Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.

In future episodes I’ll be talking to friends and strangers about their experiences seeking a diagnosis and building a life with a chronic condition.

But today I wanted to talk a little (or a lot) about my own history so that you know where I’m coming from.

I asked my friend Jacob Boon, a journalist and editor from Halifax, to interview me for my first episode. I didn’t realize I’d have quite so much to say about my own health, but now you know where I’m coming from and what I’m up to here on No End In Sight.

I’m also brand new to the production side of podcasting, so please bear with me while I learn how to make a clean and even recording. It’s a work in progress!

And of course I’ve got a quick 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]

Jacob: How do we start ?

Brianne: So usually I’ve been starting with people, and I could just start talking, and you can respond and ask questions as you see fit. I’ve started by asking people if they were healthy as a kid.

Jacob: Do you want me to just start with that?,

Brianne: Sure yeah, and I’ll include this part where I’m telling you.

Jacob: Is there any sort of introduction you’d throw in?

Brianne: I’ll do it after. I’m going to do a standardized one where I’m just talking. I don’t know what it’s going to say. I think I have to have a disclaimer that says this is not medical advice, so I want to make sure I get the wording on that right.

Jacob: Were you healthy as a kid?

Brianne: Great question Jacob, thank you.

Jacob: Oh yeah, no problem.

Brianne: I don’t know. So when I was much much younger I – it’s funny because you don’t have any point of reference as a child – but when I was much much younger I had really low energy levels and I think that’s not normal for a kid but it didn’t specifically look like sickness and could have been something else.

So for example when I was in grade one (or first grade as they say in America) I wouldn’t get out of bed in the morning to go to school. It’s not that I didn’t want to go to school, it’s that I didn’t want to wake up and open my eyes and my mom used to dress me in bed under the covers because she got so tired of fighting with me to just get me out of bed.

It’s probably pretty normal for some kids to not want to go to school but it’s pretty unusual for someone that age to not be aggressively jumping all over their parents at five in the morning or something.

And then the other thing that I remember is when I was in middle school we went to Hawaii on vacation and we went hiking into some crater because that’s what you do there, and on the way out I got so physically exhausted that I lay down on the side of the trail and just couldn’t walk out of there. And my family was fighting with me to get me out of the crater and my sister would still talk about it years later. I was eleven when that happened so my sister was still talking about it ten years later, and now it’s twenty years ago and she still says it was the weirdest thing because it didn’t feel like I was just throwing a tantrum it felt like if they had not taken me out of there I would have stayed there and frozen to death because it got really cold in the crater at night. And that’s not a normal thing for a kid to do.

Jacob: So were those things that you knew were weird at the time?

Brianne: No, this is totally in retrospect. When I was younger I did have a lot of other weird symptoms so I think my mom was doing the best she could. I always had a phlegm problem, so in elementary school I just always had phlegm coming up which is disgusting and not enjoyable. So she took me to the doctor and the doctor didn’t really know what to do with it and I had some GI tests done and turned out fine so they basically said good luck. But it’s something you can totally live with. And I had really bad neck pain for a long time, and I had a bunch of x-rays done, and it kind of went the same way, like, too bad.

But the stuff around energy, I think nobody would have really tied to anything specific. And so I think my family thought, and by consequence, I thought because I didn’t have any context for it, that I was just kind of dramatic. Like that it was moodiness or something like that, just a choice that I was making that I could be making differently.

But I still went to school and did normal things, so it wasn’t a debilitating situation at that time. And then when I was in high school I got mono and when I got mono it was very very bad. The doctor basically said please don’t leave your house for five weeks. Other people do get it that bad but many people are just kind of tired for a few weeks or don’t even really realize it. But the doctor told me my your spleen might explode. That’s probably not what she said but that’s what I remember it being like, because at the time I played water polo and she said no contact sports.

And from that point it was like the same kind of stuff but worse, so when I eventually started going back to school I could not get out of bed in the morning for the rest of the year. And when I had mono my lymph nodes were swollen it made me think of those dinosaurs. I don’t know what they’re called and you don’t know what I’m talking about and also anybody listening definitely doesn’t know because I’m gesturing. There’s a venom shooting dinosaur…

Jacob: Oh yeah, in Jurassic Park.

Brianne: Yeah, Jurassic Park, it’s like somewhere around their jawline.

Jacob: It’s just like a fin, it’s not their lymph nodes. 

Brianne: No, it’s not. But I was just walking around and they were so swollen that they blended into my jaw. And as a teenage child it felt like the part of my body that those dinosaurs explode from is the part of my body that is super super swollen right now.

But all of those things are maybe unusual but not outrageous. I don’t think they’re incredibly uncommon and I’m sure there are plenty of other people who basically remember incidents like these or had mono, because lots of people get mono, and then otherwise have been totally fine human beings.

Jacob: Well it’s interesting because a friend of mine has a very young child right now, and he has nothing major going on, but something she’s going to the doctor about just to find out what it is. And it made me think about how I went to the doctor for a rash on my arm or something like that. When you’re young it could be that your parents freak out and they take you and the doctor usually says it seems fine. I don’t know if I ever got an official diagnosis of any kind or was just told it would be fine. And you just sort of accept a base level of “you have some cooky things with your body but otherwise are fine.” And then you set out on life. 

Brianne: And maybe it will be fine. Also in middle school, I just turned red a bunch of times. It wasn’t really a rash it was a sudden general light swelling and agitation of the skin.

Jacob: So this wasn’t blushing around your crush or something.

Brianne: No, it was hot but not hives. I don’t know what it was, but it went down, and then it happened again a couple weeks later, and then I went to the doctor because it had happened twice. And she basically said “Well, I don’t know and it’s not happening now.” And this was before cell phones, so nobody had a camera on hand to document it. I mean, cell phones existed, but they weren’t like they are now. And it was the same, I had some allergy tests done and they said “Well, nothing obvious is happening and it seems to be over now, so enjoy.”

I think it would be hard to be a parent because of course as a parent you’re always worried about what somebody is going through, and if you have a kid you want them to be healthy so you probably do have a hair trigger on it. But you also don’t want the kid to think something is really wrong if you’re trying to keep pushing through it. So if you don’t think the problem is whatever the doctor brushed it off as, but you don’t want your kid to develop anxiety on top of everything, you’ll try and downplay it while also pushing for an explanation.

Jacob: I’m jumping ahead a bit but how much have you reexamined your childhood?

Brianne: A lot. It totally informs how I think about it.

When I was in high school and now I don’t even fully remember why, but before I had mono or maybe because I had mono but before I was diagnosed, I went to see a naturopath. And I had taken so many supplements and I was on a weird diet at that point (or it seemed weird then, because that kind of stuff has changed a lot). But a gluten-free diet.

So then afterwards I went to college and I drank way too much all through college, and I ate whatever I wanted. And then I would go through gluten-free phases but I don’t know that at that point they were really based on anything. But the only thing that was slightly different between me and anybody else is that I couldn’t pull all nighters. Which again, it doesn’t really matter.

Jacob: What happened, would you just fall asleep?

Brianne: No, I was in so much pain. Whenever I don’t get enough sleep or try to push my body past it’s bedtime while sober (because alcohol will mute it), my lymph nodes would just start to throb. And I knew that that’s what they were because it’s what had been swollen when I had mono. So I get a throbbing pain there, and this was true then but it was the only thing.

But it was obviously caused by not sleeping so it wasn’t a huge concern. It was never something that I took to anybody, and I just thought “Oh well, that’s a little bit different.” Because most other 19 year olds can stay up all night if they so choose. But it didn’t really seem to matter and I didn’t know that it meant anything.

So that was basically true for a long time and then in my twenties I had some skin problems. So initially small ones, like I had a rash on my finger I think in grad school and maybe a little bit after. It was just one little place on my knuckle and it would crack open a little bit and that was kind of it. It was annoying, and when I stopped eating gluten it went away. So then I knew that eating gluten was a bad idea but sometimes I would do it anyway.

Oh, and the skin around my eyes.  Also in college, the skin around my eyes started to get flaky and then pieces of it cracked open. So there were gross cracks. This is why I have my own history of problems with doctors, because then I went to the doctor about it. I went to college in a really small town so I went to the health center and said there’s a small open wound around my eye which is concerning to me, what should I do? And there was a hospital in the town but there wasn’t very much, there was certainly not a dermatologist, so she sent me to the optometrist.

Jacob: Well, eyes. It’s near the eyes, your issue.

Brianne: Yeah, it was the skin of my eyelid. So the optometrist, or the assistant at the optometrist office, I don’t know who it, said “Oh, you know what will help that? Johnson and Johnson’s baby shampoo. You need to just put Johnson and Johnson’s baby shampoo on the skin around your eyes. But it can’t be the knock-off one. For some reason, whatever they use in the generic is not what will help this.”

So I did. I bought it, and I got q tips, and did that for awhile, and nothing helped because that’s an absurd thing to do! But as it turned out this was the same as my finger, when I don’t eat gluten my skin stops cracking open. So fair enough I guess, I know the lever to pull even if I ignore it sometimes. Which I then continued to do, because weird stuff was happening and I totally see it as weirder now because I’ve had to look back, but that was it and through my twenties that was it.

And then whenever it was, things got way worse. I think it was 2014? It was three years ago, maybe four years ago, when I moved into a new apartment. I had been living in a basement and I moved into an aboveground apartment which felt like an improvement but as soon as I moved into that apartment I started to get rashes.

I also got the stomach flu, which is normal but I went to the hospital for it because I was puking for 13 hours or something and I called the health line number. And they said they’d send an ambulance for me because I was going to lose all my electrolytes or whatever happens, I don’t know. And so while I was there I said “By the way, do you know what’s going on with these little patches on my arms? They’re very itchy.” And they said it was nothing to worry about and probably had nothing to do with why I was puking.

So I went home and it just kept getting worse and worse. It was this rash that spread on my arms, and then it spread down my calves. It was on my forearms and then on the front of my leg specifically, so my shins really. And then it started spreading to my torso, and it was so itchy that I was having trouble sleeping and I was scratching my arms all the time. I have long nails as a person, and I was scratching my arms so much that I bled every day, like all the time. At that point I didn’t have a primary care physician, so I went to a walk-in clinic and they gave me hydrocortisone, I think, and then that didn’t help. And then I went back a little while later to say it didn’t help and they gave me, I think, a stronger steroid cream, which also didn’t help.

Jacob: What did they think it was?

Brianne: A reaction to something. She said “Oh, it’s obviously a reaction to something! Here’s the cream.”

Jacob: I guess that’s true about the universe, really.

Brianne: Yeah, like… thank you. And then she referred me to a dermatologist. The dermatologist was a walk-in clinic one day a week. This was in Ontario, so everything is covered but there’s cosmetic dermatology that is not covered by government insurance. So it was this flashy cosmetic dermatology clinic four days a week and then they would have walk-in hours one day a week which was covered by insurance.

So I went in and it was very fancy and then I got in to see the guy. And I was sitting there in his office describing it to him and just saying what I had tried for it because that was all I knew, and I was scratching because I was always scratching. And he asked if it was that itchy that I was scratching all the time and I said yes. So he said “It’s scabies.” Full confidence, “It’s scabies.”

Okay weird, but I don’t know, sure maybe. I know that you can get scabies from sheets, you can get it from all kinds of things, so I’m trying to figure out how that could have happened. It’s kind of like bedbugs in that way, it’s transferred skin to skin but it can also be transferred other ways.

Jacob: It’s interesting too, because if someone in authority says something with confidence you’re like “Ok, I guess it is.”

Brianne: Sure, yeah, because I don’t know. I know that scabies exists but I don’t know anything about it because I’ve never had cause to research it before. I think it’s kind of like lice but slightly more associated with sexual stuff and that’s all I know.

Jacob: Ashley MacIsaac had it once. He wrote about it in his book. We’re off topic.

Brianne: No, that’s fine. All I knew about it was someone that I went to middle school with had it and then she was accused of being promiscuous. But actually she got it from a hotel in that case. So he says you have to get this cream called Nix, I forget if it’s prescription or over the counter, but it doesn’t really matter. It’s a gel and you have to cover your entire body from the neck down and then you have to let it dry and then sleep like that. So you sleep with this dried gel that is on literally your entire body. And you also can’t sleep in your bedding because it could be contaminated.

So I took all of my bedding and I put it in a trash bag. And then I got my sleeping bag. And I’m covered in his gross gel in a sleeping bag, on my bare mattress. And I think I probably put my pillow in a garbage bag too. And and then you do it twice just in case you missed some. So I do that twice and nothing changes because it’s not scabies.

At this point I have googled it and discovered that of course there’s a way that you can confirm that it’s scabies. You can do a skin test to see if there’s eggs or something, there’s something that you could do instead of just saying “Oh I noticed you’re scratching your arm, so this is what you have.” Anyways that was a lot of detail about a small thing but the result of it was I didn’t know what to do.

And I didn’t know who else to ask about it. My sister is a naturopath and she’s 13 years older than me and we’re pretty close now, but we have a dynamic where it’s hard for me to take advice from her just in general. So I went to visit her and I was still just scratching constantly and she said “Here’s what I would do if I were you.” And normally I’m like “Screw you, I’m not doing that!” But this time I didn’t know what else to do so she said it was probably fungal and she thought I should use something like tea tree oil because it’s an antifungal, and that I should just look into the candida diet. She told me to do my own research, but that was probably what needed to happen.

Jacob: And that diet is what again?

Brianne:  So basically candida is a type of yeast that is naturally occurring in your body. In everybody’s body. But if it gets disregulated it’s like an internal yeast infection in your digestive tract. And the reason that it causes a problem is that – okay some of this is super hazy – during die off it causes a problem because I think it throws off your gut bacteria. The microbiome is a very popular topic right now, there are lots of books on it, but they eat some stuff inside of you and then they also produce something, that’s what they’re doing. So some of our gut bacteria is good because it helps us breakdown fiber, but yeast is not good and I believe it causes problems because it’s byproduct is toxic to us. So at a very small level it doesn’t matter.

And it’s hard when you start using words like toxic because there are enough people using it in a way that’s not real. But there’s also a real part of it, so it’s okay you can ask about that because I know that, but like toxic is a real thing. People use the word toxins in a way that is so broad that it is not always related to reality anymore.

Jacob: What we mean here is a product that conditionally in this circumstance causes a degradation of health.

Brianne: I think that it’s normal for us to have a little and we have many yeasts because there’s lots of yeast in the world. And we have many microbes because there’s lots of bacteria. And it’s an imbalance that can be what causes a problem, because then there’s more of them and they take up more space and they produce more of whatever junk that they produce. And so a small amount is totally normal and your body is equipped to handle it, and a large amount your body is not equipped to handle. So this is the theory of it, which, whatever I didn’t even care at that point.

And so the diet is basically based around starving out the yeast. That is the premise, which this is why I need a disclaimer at the beginning to say that I’m not giving medical advice. I think the same thing now that I thought then, which is that I didn’t really care if the scientific explanation was sound. If it worked I would do it.

Jacob: You just wanted to feel better and not have this rash.

Brianne: So I had to stop drinking completely and I stopped drinking coffee and I stopped eating pretty much any carbs. This was also before the ketogenic diet, which is a super trendy thing right now. The ketogenic diet has existed at least since the seventies I want to say, but it wasn’t in the mainstream and I had never heard of it at that time. I feel like now it’s kind of everywhere. But anyway so you don’t eat carbs and different people have different lists of what you’re allowed to have and what you’re not, but the premise is that by not eating carbs you’re starving out the yeast. Which, again, I’m not a doctor but it was worth a shot.

And so I started doing it and a bunch of stuff happened. I figured I would do it for two weeks and see if I noticed a difference, and I noticed a difference basically right away. My rash started to clear up immediately. It was gone from my torso within two or three weeks and it started to clear up on my arms and started to clear up on my legs. I was like, “Well, fuck, that’s a lot of things that I just stopped eating and now I don’t know what to do.” And then other stuff that happened was that I realized that I physically could not stay awake past 9:30. So when I wasn’t drinking and I wasn’t having caffeine, it wasn’t like I was just a little bit drowsier.

One night I packed up a bunch of snacks that were good for me and I went to my friend’s, and I don’t know why we ended up playing poker because that’s not a think that I do, but we played poker. And they all had a couple of drinks and I had soda water because that was my fun drink and I stayed until about one. And I was eating enough so that wasn’t the problem, but when we actually got up to leave I blacked out on the sidewalk. My body wouldn’t be awake anymore. Two friends and I were traveling together fortunately, so they got me into a cab and got me home and then I slept in my coat on top of my covers because I couldn’t get my body functional enough to undress and get under the covers for hours. And I thought “Well that’s not normal, but I don’t know what that means.”

Jacob: I’m kind of curious, when in this process of figuring things out and going through this does it sort of reach a tipping point and turn from “there’s something in the environment or something small that is happening” to “oh this is something on the whole that is not right.”

Brianne: Still like another year. At that point another thing happened that was good. So I found out I had an off button that kind of happened around 9:30. I couldn’t stay out at night past about 9:30 and if I tried that my body was very mad. But I also started waking up a lot earlier. I started waking up at like 6:30 without an alarm, so I started doing other stuff that is good and I was able to do it in the morning. I started running, I started exercising more and I was certainly eating generally better, because I’m eating more salad and more whatever. It looked like things were really improving, because in a lot of ways they were, which is probably because I wasn’t numbing everything with mostly booze and coffee probably. But it was a weird thing.

Also at that point I was working out of a co-working space, so my job was super super flexible. I was employed full time, and I think by then we were in an office, but I was employed full time and I had a desk, but the space that we were in had a lounge area with a bunch of couches and different seating areas. And for maybe two years that I was there I was sharing a desk with somebody so I was only expected to be at my desk half the time. I was expected to be working about 40 hours a week but I was only expected to be sitting upright about 20 hours a week, and so I was lying down a lot without thinking of it that way.

So that was kind of true this whole time because if I was having trouble getting out of bed, which up until that point was normal, it didn’t matter because I could work from home for the morning. And if I was having trouble staying sitting at my desk, which also happened all the time, then I could go lie down on the couch. And none of those things kind of added up to anything to me.

So I started all this and I changed my diet and I did all this stuff and then I had to start adding stuff back in to kind of mixed results. I started drinking occasionally again to kind of mixed results, but the rash didn’t come back so I figured a little bit of experimenting was fine. I think I started drinking coffee again and then maybe tried to quit it sometimes, and maybe six months after I had changed my diet, I don’t remember, I got a new job and it had much more normal hours.

So I would get to the office at nine and it took me half an hour to 45 minutes to get there, and I would stay there until five and it took me like half an hour to 45 minutes to get home. Sometimes I took the streetcar and sometimes I would bike which was nice, because I was still exercising regularly like a person. But after I’d been at that job for about eight months, I couldn’t function in the evenings anymore. So I would get home at like six and I would go right to sleep for an hour most days. I think this was in March, so a year after the diet change and eight months probably after starting this job. And that was kind of messed up because it wasn’t a high stress environment, I was an editor. Maybe your editing job is high stress.

Jacob: The diet change, is there a goal that after a year or something you have gotten rid of all that yeast, it will be starved and you can go back to eating whatever you want?

Brianne: There are a lot of different theories about that specific thing.

Jacob: Did you think you were going to get there, I guess is what I’m wondering.

Brianne: Well I knew that having gluten was bad because I’d been having problems with it for a lot longer. And I feel the same way about that that I feel about everything, which is that maybe it’s not gluten maybe it’s something else about wheat or maybe it’s something else. There are so many theories and I don’t care, I just know that when I eat things with wheat in them it’s a problem. As a side note, I already knew that that was something that I probably should be avoiding and mostly wasn’t.

But the theory of the candida diet is that you go into this most intense phase and then you also start taking antifungals which should kill the yeast faster and then you’re supposed to start taking probiotics to repopulate your gut. And if you can create a more balanced environment then hopefully there won’t be room for it to just grow back in. And then I think they recommend that people reintroduce food slowly and kind of see how that goes. And I had done elimination diets before that to try and deal with my weird energy levels and I never notice. I’m terrible at that part of it, I can never reintroduce one food and then monitor it. Nothing is ever directly related. So that’s not that fun.

And at that point, this whole other thing happened. So I had been to doctors a couple times in the middle of this, because I was having trouble getting up in the morning for my job at the co-working space. But that was easy, because I could lie down. But my boss did ask if I was sick. So they ran blood tests and maybe my iron was low or something. So I took some iron, and that was kind of it.

So I got a primary care physician right after changing my diet. And also when I changed my diet I lost a lot of weight. I think I lost 40 pounds maybe even slightly more, so that was my lowest adult weight ever. And the thing that happened when I lost weight is that I stopped getting my period, which is pretty normal for someone who loses a lot of weight. It’s a weird thing that maybe you know about and maybe you don’t, I don’t know how out in the culture it is but it just happens. Basically your body thinks that there is something wrong with the environment if you lose that much weight and so it’s not safe to have a child. Like, scientifically speaking that’s what’s happening.

[Jacob laughs]

So I got a primary care physician and I told her I’d had this weird thing and I still had a little bit of a rash on my legs. She did a biopsy and we found out it was eczema. So it had been eczema the whole time but it was almost gone by then so it didn’t really matter. And I’ve had really really terrible menstrual cramps my whole life. I’ll black out and have to lie down randomly in public. This has also been a totally normal thing for me that has happened many times. I’ve had to call people to pick me up at the side of the road because I lost my vision and I had to lie down but there was a six lane road between me and my apartment or something like that.

And so I go to my new doctor and tell her everything that’s happening right now. I just lost a bunch weight and I had this rash but it’s kind of clearing up and now I haven’t had my period in four months and I’m just wondering at what point is this something to be concerned about. And she said it might be fine but we could do some other tests. And at that point I was diagnosed with PCOS which is polycystic ovarian syndrome. Is that something on your radar because I can explain.

Jacob: Give me the elevator pitch.

Brianne: So it’s a syndrome which means that they don’t know why it happens, it’s just a symptom cluster. But basically in order to be diagnosed with PCOS you have to have three of a much longer list of symptoms. So it looks different in different people, but what’s happening is that your hormones are out of whack and – this is super biology – when your ovaries create a follicle. Each time there is a follicle that is maturing an egg and then it ruptures and releases the egg.

But when you have PCOS it doesn’t rupture so they turn into a little cysts on your ovaries. And the thing after they rupture that I do not remember the name for right now is what produces progesterone. So the way that a cycle works is that you’re producing estrogen, you’re producing estrogen, you’re producing estrogen, and then the follicle develops and then it ruptures and then you’re producing progesterone and your estrogen levels come back down. And there are some other hormone spikes in the middle but people with PCOS are estrogen dominant because they do not produce the normal amount of progesterone and they have all these little tiny follicles that you can see on an ultrasound.

And so the way that it typically looks is people with PCOS have trouble losing weight, so it’s more tied to weight gain. It’s tied to male-pattern hair growth so people with PCOS typically will have facial hair, like a few more wiry hairs on your face. And also it’ll be tied to hair loss as well. So thinner hair on your head, more thick hair on your face, and weight gain. And it’s much harder to lose weight than it is for many other people. And that is linked to insulin resistance, which is why it’s harder to lose weight. And so people with PCOS are seven times more likely to develop diabetes. Type two diabetes. Are you with me?

Jacob: I’m with you. 

Brianne: That’s much information. Okay so on the flip side is that the rest of your cycle isn’t working properly. A lot of people have irregular periods or no periods. So on the one side there’s probably something wrong with your insulin, you might be insulin resistant so there’s a risk of developing diabetes. And then on the other side if you don’t have a period then all of that matter, like the nest that it’s building for your future baby, stays in your uterus and because it’s not supposed to stay it increases your risk of uterine cancer. You’re supposed to shed your uterine lining every month and if you don’t it’s just sitting there getting weird. Again, like medically speaking.

Jacob [laughing]: Technical terms, yeah.

Brianne: So the doctors says that since I haven’t had a period in four months we should be putting me on the pill because it’s important that I shed that lining. And that’s a very animal way to think about something. But I said ok, sure I can do that. But I haven’t been on the pill since I was about 18 by choice, and I don’t really want to be for a variety of reasons. And also with this other thing I just lost a bunch of weight I didn’t put on any weight and am I just going to slowly get diabetes if all I do about this is take the pill? Because that’s not my preference.

I’d had a regular period, completely like clockwork, up until this happened so I asked if there was a chance that this was just a shock to my system and it would come back. And she said there’s no chance of that happening. So I think she gave me a prescription for three months to start with, so I took it for three months and that was normal. And then I stopped and it was weird and then I started taking this supplement called vitex, which again is something that naturopaths will recommend and it has to do with hormones but I don’t know if anyone has any strong reasons why. But I didn’t want to mask a symptom that I’d never had before. If other problems are happening I would rather focus on maintaining health, and this is because I’ve had so many other bad experiences with doctors, to be clear.

So I started taking it and then my period came back and has been fine ever since. And other doctors that I’ve talked to have said they think I probably don’t have PCOS. Okay, cool. So I did a ton of dietary interventions. Because basically keto, this is when I first learned about keto, is really recommended for a lot of people with PCOS because they have such bad insulin problems. So if you’re insulin resistant and you eat a low-carb diet then you don’t need to make insulin so it’s not a big deal. So that’s a diversion. But that’s the point where I thought “I’ve been diagnosed with something so I can finally take some action and do something about it.” And then, it kind of fizzled.

Jacob: Can I ask how obsessively did you research this, like how deep were you going in your research about what might be causing all these issues with you? Did it become your main hobby?

Brianne: Yeah, oh yeah. And that’s like the kind of person that I am in general. I just have one thing that I’m reading about obsessively, much more than anyone ever wants to know, so I extra appreciate you talking to me right now. Because I get really deep into it because I’m curious and I also want to understand. I’m not opposed to medication but I don’t want to take medication if it’s not handling the problem, which is what it felt like with that prescription.

Because she also told me that in the future if I ever want to have kids then PCOS really makes it hard to conceive, because you’re not doing your half of it. So if that ever happened then I should come back and she’d take me off the pill and then we’d spend two years otherwise fucking with my hormones. That’s not obviously what the doctor said verbatim, but it didn’t seem like a good idea, there must be something better out there.

One thing that I learned about PCOS specifically, and this is a women’s health gap issue, is that most of the research on it is really recent. Even the diagnostic criteria is pretty vague and they have no idea why it’s happening and it’s not because they’ve been putting a ton of research money into it, it’s because they don’t care. It seems like “Well we can put people on the pill and that’s it.” And then when people want to conceive I think they give them metformin which is a diabetes medication. So that was a fun diversion.

Jacob: During this period, and we’re not done yet, but now we’re like two-three years in?

Brianne: To things being sort of off kilter? Yeah so I started keto probably right about a year after I had done the candida diet.

Jacob: How are you feeling about all this?

Brianne: I still wasn’t looking at theenergy stuff which was weird but not unmanageable. I was still working, I was just sleeping as soon as I got home from work every day.

Jacob: But were you worried, were you scared, were you angry or frustrated?

Brianne: With PCOS it was more interesting. At that point it was mostly interesting because it was a name for something that I can read about. Because I’m already somebody who’s read so much about food stuff and I’m super interested obviously, and I always have been. So it was cool that there’s a subreddit about this where I can find out what other people are doing and there are lots of podcasts where people are talking about it. There aren’t very many good books but I did read a couple. I just got into it and was happy to have an experiment that I could do. And when you have an experiment that you can do and the symptoms aren’t that bad, it’s okay.

I think this is because I was atypical. I think people go through a lot of self esteem issues when they put on weight and no matter what they do they can’t lose it, and now they’re growing a beard and they don’t want that. Or they’re losing their hair and it’s really awful. Or people who are trying to conceive really struggle with it. But with that diagnosis specifically the way that I experienced it, it was okay. Not getting your period when you don’t want to get pregnant is a little bit concerning at first, but when I knew that I wasn’t pregnant it was kind of great because I didn’t have to go through the debilitating cramps that I have. Eight months of never worrying about fainting in public is not a bad thing.

So that particular part of it was okay, but I was losing steam again really badly around the same time and that was what was getting more concerning. I was also super overcommitted, so I was working and then I volunteered about three different times a week and then I was running a writing group and the storytelling event that I did with collaborators but we were all at everything. So we ran two workshops a month, plus the event every month, plus we’re making a podcast that we recorded every other week usually, plus the volunteer commitments which I really liked doing, plus I was running. So it was not working and I was starting to crash and it was getting harder to just do those things.

I was just really really dragging I would say, and so this is around when I decided to leave Toronto so I took my job remote. And at that time I thought I was going to San Francisco and I was thinking of it as a sabbatical, so maybe I’d only go for three to six months. And by taking my job remote I could really really focus on my health. And at that point I was reading about adrenal fatigue which is maybe a thing maybe not a thing. Is this a thing that you’ve heard of?

Jacob: No.

Brianne: Okay. So your adrenal glands sit on top of the kidneys and basically – gosh, now it’s been a long time since I’ve even read about this – but I want to say they regulate your cortisol levels. It’s been a long time so this could all be kind of false and just my interpretive recollection, but I think cortisol is one of the stress hormones. And I did a hormone test for this too. I believe it’s what’s released during a fight or flight reaction, so the way that you might think of adrenaline. So with adrenal fatigue your cortisol becomes disregulated.

Normally your cortisol’s really high in the morning when you wake up, and that’s why people who have energy wake up energized. And then it goes down steadily throughout the day. And this part is real, like solid science on this. It goes down steadily throughout the day so that at bedtime, in theory, in an optimally healthy person, it’s easy to go to sleep at an appropriate hour.

My father-in-law just gets into bed, he tells us this because my mother-in-law has trouble sleeping. He says “You just get into bed, and you take a sip of water, and you pull up your covers, and you roll over and go to sleep.” And that’s his relationship to sleep. But when your cortisol is disregulated you lie awake miserable and also can’t get up in the morning. It’s all of these things. So I was reading about that.

Jacob: I wanted to ask about how – you mentioned this a little bit – but how this impacted your social life and your friends and your family. Maybe not just in activities and what you’re capable of doing but also in trying to explain it to people. What was that like?

Brianne: Well, when your diet changes and you stop drinking, that by itself is hard. No matter how much your friends are theoretically supportive, if all you’ve ever done together is drink beer and eat nachos (which is true for many of my friendships because I love both of those things) but if that’s all we’ve ever done together and had really awesome conversations and become very close friends, then that’s the context for our friendship and now I can’t do either of those things. Or I can go to the places where that’s happening but I can’t stay there past 9:30 which was also normal, so all of the levers were different. And so it was really difficult just to participate because it was hard, just in the context of a lot of my relationships.

And I still had this other stuff, like the the event and brunch was really good. So we did our workshops as brunch workshops, and eggs were still okay, cheese was okay, bacon was okay, and I could make tea so I was glad I had this one thing where I’d invite people into my home and then make them share their innermost emotional stories. So I still felt connected to people but just the context for my social life had really changed.

And I think most of my friends were also trying not to ask too many questions because that’s what people do. Because you don’t want to bring in your own bias and sound skeptical and also just don’t really get it. Because it doesn’t make sense. But for the people that I saw every day, it was obvious to them that I had had this horrible rash because they had seen it happening and then it was going away, so obviously it was working.

And then on a larger scale with my family, my sister lives in California so she was far away but would hear about it and be totally on board and want to solve the mystery. But she only knows about certain things. And I think with my parents it was mostly just kind of confusing. It was always a moving target which is really hard. They did try to be accommodating but they could never remember what the rules were because the rules were always changing. And they’re really clear to me because I understood why I was trying different things at different times, but if you didn’t see me every day and talk about this with me nonstop. 

There is like a level of isolation, where it feels like I’m in a new club now, the club where I focus on what can I eat and how can I try to get my energy back. And nobody that I know in real life is in that club, because nobody even has the problem. And this is something that I say a lot now but I didn’t really think about then: even just the words that we use, so when I talk about being tired what I mean is that like I am in physical pain. My neck is throbbing and I can’t focus and my head starts to need support, and it was like that then. At this point I’m probably 28 or 29 and I still didn’t really know that other people weren’t really on that spectrum. Maybe some people are but many people aren’t.

And so when people told me to just flight through it sometimes, I’d think “Well I kind of can, but I don’t think it’s the same as when you do.” So all of my friendships, even my really close ones, the context of them was still going out and drinking. So I was feeling very disconnected from Toronto and I think if I had stayed I would have figured out different things. But I think I missed the last storytelling event before I left and I had never missed one before, but I just couldn’t go to this thing that doesn’t start until 9. That’s not happening for me. So then I went to California and something else was happening by then that I just thought of, but now it’s gone again it’ll come back.

Jacob: What was it like in this state where you’re dealing with all of these things and you’re moving ,you’re going to a different country. How was that to deal with while you’re still wondering what’s happening inside your own body?

Brianne: Well, I thought it would be helpful. So, Adam and I – so Adam, to whom I am married now but was not married then – he packed up all my stuff basically. He moved all my stuff into a storage unit and he’s just not worried about that kind of thing. I’d say “I’m not just saying that I need to sleep so that I don’t have to do this!” and he’d say “I see you every day, I don’t think that. I can see it when it’s happening.”

Before we went out there we went to California for the weekend and we were with my friend Megan who lives out there. And we were exploring the neighbourhood where we were probably going to be and I was sitting on a couch in a coffee shop and I was slowly sitting lower and lower on the couch because I knew that I needed to have my head supported. And eventually Adam said ” You’re melting, what do you need?” So I said I either need salt or protein because it’s usually one of those two things for all kinds of reasons. And then Megan asked “Why what’s happening? I thought you just weren’t into what I was saying you.” So I had to explain that this is the thing that happens now, I get tired and I can’t really support my own head anymore.

And then the next day we went to her place and she said “I need to have an intervention with you! I had no idea that this is what that looks like and it is not okay and I am very worried and I have not seen something like that before.” This is also just how she communicates. But she said “I’m really worried about you and I want to know what can be done about whatever is happening because it’s not normal in the middle of the afternoon to just slowly melt into a couch because actually you can’t support your own head. And so I kind of thought oh shit, it’s been happening so gradually that the people around me, and me too, just kind of accept this is a part of my personality but maybe it’s not.

So part of me thought I was going into a new context where my sister is there who is a naturopath, so she’s super sensitive to this kind of stuff and has a lot of ideas and can do lab tests for me. And then this other person was there, I mean I think all of my friends cared about me I don’t have weird friend resentments about this, but this person who’s been away from me for so long that they’re seeing it through different eyes is my main point of contact in this place right now. So I think I flew to Boston and then we drove from there to San Francisco over the course of three weeks. I think I drove one time for two hours and I almost hit a deer and I got an adrenaline rush so I asked Adam to drive for a little bit because I was pulsing with adrenaline. But that was the only time I drove because I was half sleeping all the time.

During the middle of that drive we went to my friend Sofia’s wedding and I just thought fuck it, she’s one of my friends from college, and Megan who I just mentioned was there and my other college roommate was there. So I just said I’m going to eat whatever I want I’m just going to be a normal person for the weekend because usually three days doesn’t really impact the rash stuff. So I had some drinks, I had some cake, I had a bunch of red bull in order to get through the wedding because I was officiating, and then I was drinking at the wedding like a regular person at a wedding.

Then that night every time I went to the bathroom I would have to pull up my dress so I would touch my thighs, and every time I touched my thighs I had that feeling like I was touching a bruise. You know when you have a bruise and you forget that it’s there and you touch it and you kind of recoil a little bit?

Jacob: You’re still very sensitive.

Brianne: Yeah, like your skin hurts. So that’s the only way I can describe it. And it was every time, but I was kind of drunk so I didn’t really think about it. But it was both of my legs, every time I touched them that’s what it felt like. Later we went to a bar and I don’t know got a bunch of cheetos or something before we went back to the hotel. The next day one of my friends, her flight wasn’t leaving until much later in the day and I never seen her, so we spent the day with her and we walked around Navy Pier and that whole day I just kept complaining that my skin hurt.

And she said “What are you talking about, that’s not a thing.” But the same thing was happening. If I got a a hug or if Adam put his hand on my back, I would recoil because I felt like there was a bruise there, but everywhere. And that was super weird. But I didn’t drink that day and I think we drove to Madison and I slept for probably twelve hours and then when I woke up – to link back to a different story that was the first time I got my period after having gone off birth control so that was just weird –  but the skin pain was gone. So I thought okay that was a strange anomaly.

So then we got to California and I was napping every day at this point just like a regular adult. I was sleeping for 10-12 hours a night and then napping for two to three hours every afternoon and I was pretty hazy in between.  So I though okay cool, this is something that I can just figure my way out of, right? Like, I just need to eat less corn? I don’t know, I had no idea.

And at that point I got tested for autoimmunity markers. I wanted to know if I had an autoimmune disease because this was when I started to learn more about chronic illness and I think I got there because of PCOS. I was researching the diet stuff and I started listening to a paleo podcast which  would bring on a lot of people who had written books about specific conditions. That was kind of how I got into it, so it would be someone who had a specific protocol for a condition and I started learning about mostly autoimmune stuff. And I thought maybe that’s it, do I have a thyroid problem? What would explain what I’m going through? Which was that I’m sleeping 15 hours a day, if I don’t get enough sleep which would be less than nine hours asleep then I’m in a lot of pain and it hurts to touch my skin. Normal stuff. Just a slow regular change.

So then when I was in San Francisco I went to see a functional medicine doctor, which is a person who did go to med school. So there’s MDs and DOs which are basically equivalent medical educations. DOs are supposed to be a little bit more like holistic but they’re still in the traditional medical model. And functional medicine is a certification system outside of that. They have conferences and stuff I think. I just wanted someone that was both going to do a lot of tests because I wanted to know what was actually going on but also wasn’t just going to tell me to take this one medication because it’s what they’re supposed to tell me.

So I ended up going on a ton of supplements, and then she put me back on a candida protocol. So another antifungal, some supplements. And then I also took two different prescription antifungal medications. And that really helped. I didn’t need to nap anymore, I was more of a person who could reliably leave the house and so I was doing a lot better. I was still sleeping a lot and mostly eating the same way with vegetables, meat, sauerkraut because it’s fermented and that’s supposed to be good. But I was on a much more even keel. And then we moved. We’d been staying with a roommate for about six months while that was happening and I have no idea what she thought as I’m the person who goes to bed at ten every night and sleeps for like three hours in the day, and she was a friend of Adam’s, but Adam’s just like hanging around living his life.

So we moved into this new house and I was doing some editing work and I had a job outside the house teaching kids STEAM at a makerspace which was really fun. But when we went back to Toronto for a week in June I decided to get tested for celiac because I wanted to know if I actually had it. So I was eating bread that week. And then as soon as we got back to the house that we had just moved into, immediately after going to Toronto I basically couldn’t function. I didn’t get off the couch for two weeks.

We lived about three blocks from the grocery store and one time that I tried to walk there I couldn’t get myself back. I just kind of lost it in the grocery store and Adam was pushing me gently back and he said “I hate when this happens because I look like I’m dragging you against your will back into the world.” And then that was for two weeks and then I had to go back to work because I’d had that time off anyway, I just wasn’t working those weeks. When I went back to work it was the same way that it’s kind of always been, which I can caffeinate my way into doing something but as soon as it’s over I’ll just crash harder.

And then at that time I also developed a tremor, so I started to shake. Especially the more tired I was, it was mostly in my arms, but I just had a light tremor and I’d had more of the skin pain that I had before. And I went to my doctor because I had a new primary care physician, so not the DO that I’d been saying but the one that was covered by insurance, and I basically said “Hello, I would really like to get to the bottom of this. Something is going on.” Also my knuckles were swollen every morning when I woke up and painful. Also the weirder part was that when I first woke up in the morning, and this had been going on since Toronto, it hurt to step on my feet. I don’t know how else to explain it, it was like my feet were swollen when I woke up.

Jacob: When a new thing popped up, is that terrifying, is that exciting that you maybe now have this one brick that you put it in and you have a full diagnosis of what this is, how are you feeling when there’s a new thing?

Brianne: At that point I thought maybe it was the flu, maybe it was gluten after not having it for so long. And they’d been happening so gradually and now I’m remembering them slightly out of order, like the foot thing had been happening for a long time. But with my knuckles and specifically with the tremor I thought that this is something real. Because when you go to a doctor and you tell them that you don’t have any energy and that you’re tired, it doesn’t mean anything to them. It doesn’t sound serious and this fits into the hysteria model of medicine, frankly.  But they don’t really think that anything has to be done. So I thought okay, I’m going to make a list and I’m going to go in and I’m going to tell her everything, and I did and she was listening and she was typing and she said “Okay, we’ll get some blood work done.”

So I got the normal kind of panel of whatever they do, it’s like your complete blood count and your cholesterol and whatever else and everything came back normal. They had an online portal so she sent me a message that said “Hey Brianne, I just got your labs and you should be heartened by the fact that everything looks good!” But I am not heartened by that, that’s not good news to me. So I pushed back once in the messages and I just said that I don’t even know what to ask for because the only things that I’ve heard of are autoimmune diseases that the labs are saying that I don’t have, so what would you do? I said that I can’t go to work so what would you do if you were in my position? And she said “Well I guess I’d talk to my employer.”  But I didn’t mean give me career advice, I meant I would like some medical advice from you. And I relisted my symptoms and she told me to come back in.

So I went back in and I had like a take-home sleep exam because I was really tired and my nose was running all the time – at this point my nose is running every morning when I wake up for the first two hours – and my knuckles are swelling. So we check my sleep quality it was pretty normal. Maybe some light snoring but I didn’t have sleep apnea that could be causing all of this.

Jacob: What is the take-home sleep test?

Brianne: It’s a little cuff that goes on your finger. It inflates over your finger and I think it could monitor your blood pressure and your pulse maybe. Because those things change when you’re in deep sleep. And then it also has a little wire that I think is just a microphone that you tape to your chest. It may also be a motion sensor, so it’s supposed to be paying attention to how restless are you and how loud do you snore. I think that’s how it operated. But it didn’t really give us any new information.

So she also talked to a rheumatologist, which is the doctor that broadly handles immunity stuff and that’s who you would go to if you were looking for a specialized autoimmune diagnosis, or lupus which is somewhere in the middle, and he didn’t really have any follow-up questions. So there were no flags from the rheumatologist, but she thought the knuckle thing was interesting so why don’t we do a hand x-ray. So then I had a hand x-ray, because I guess rheumatoid arthritis is also an autoimmune disease. So I had a hand x-ray and that also came back with no new information and at that point I didn’t really know what to do. People who have never been in this position say you just need to be a better advocate for yourself, but I didn’t have anything else to ask for.

Jacob: Like, what does that mean?

Brianne: Yeah, you’re supposed to tell them that you’re serious about it. I wasn’t saying “Oh, it’s not a big deal,” I was saying “No, this is a big deal!” But it didn’t matter because there was nothing in her awareness that would’ve popped up. She didn’t have any further questions since she couldn’t think of any further questions. She was not curious. She probably wasn’t allowed to see patients for more than 15 minutes at a time because that’s how the insurance model works. And this is the same in both countries, I’ve had this experience in both Canada and the States.

Jacob: I was kind of curious how it compares between the two countries.

Brianne: I would say pretty much the same, except in the States I had a copay so I was still paying every time. But their curiosity and ability to go deeper is the same.

So this is pretty much exactly a year ago, I was gone for a week and then I came back to the house and it happened again. I got so much worse immediately. And then I stopped working at the end of September at the remaining contracts that I had. I’d still been doing some editing and I was at the point where I was not really confident that I was reading it properly because I couldn’t focus at all. My brain was so foggy and so sometimes I’d  ask Adam, who is not an editor, to read it to see if I’d missed anything obvious because that’s the point that I was at. So I quit because I didn’t want to get fired from a bunch of jobs for doing a bad job at them when it was also causing me so much stress.

And somewhere in there I went to see a therapist, because nothing was coming up as anything and I’ve had small pieces of this my whole life so I’ve always thought that maybe I’m just being obstinate and I’m just not as motivated or good at getting out of bed as other people, like it’s something in my head. And as it started to get worse I was seeing her and talking about it. And when I was seeing my insurance doctor one of the things that they do, a standard thing that they do is the depression screener. And the thing about not being able to get out of bed and becoming increasingly pessimistic about your future, all of the things that happen when you are sick, is that they also read like depression.

When my dad died, which didn’t come up in this at all because it happened but it wasn’t really health related, I was grieving really hard and my mental health was affected and I know what that felt like. And in this instance I do not feel mentally unhealthy at all, but it’s not working.

And so as I was fighting with the doctor more and trying to be more assertive to ask for something, I also had seen a therapist. And she said “Okay, I’ve known you for a few months now. I hear what you’re saying. I do not think this is a mental health problem. It sounds like there is something going on physically.” And that was honestly the first time that I was like – okay, I’ve been worried about the tremor, I’ve been worried about my knuckles, like this stuff is obviously physical – but what if all of this is physical? And that was really like, what? What an outrageous way to think about things.

And that’s I have my examples from when I was a kid, I rethought about them and asked what would it mean if I wasn’t just temperamental and I was actually physically struggling that much? What if I was just a sick kid and nobody knew because nobody had the context for it? That’s fucked up.

And so at that point I went to my insurance doctor and said I still need to know what do I call it, what do I tell my employer. I’m quitting my jobs and I would like to have an explanation for myself and also for them, because it’s weird to randomly quit. And I was reading more about chronic fatigue syndrome which I didn’t know very much about except that it existed and that it was treated like psychosomatic but maybe that wasn’t true. And reading more about fibromyalgia which is like the same thing but with pain. So if you’re so exhausted you can’t get out of bed then they call it chronic fatigue syndrome and if that’s happening while your nerves hurt, they call it fibromyalgia. That’s the situation.

So I wondered if I was in that family. I have this skin pain when I don’t sleep well and I’m worried that it’s going to get worse, what can we do about that? And the doctor said if it gets worse I could come back and she could put me on some fibromyalgia medication which is basically antidepressants. And it was like the PCOS thing all over again. Because I’m not going on antidepressants because my skin hurts. I don’t think there’s anything wrong with antidepressants, I think there are people who find antidepressants very helpful. I think maybe as a culture we’re overmedicated and some people take them that don’t need them, but I am not taking them to mask symptoms of something else That’s not okay with me. And that was when I stopped seeing her and that was when I quit my job.

So that was a really awful couple months, well about a month. At that point I thought this might just be what my life is like now. Where I have to basically bank energy for a couple days and not leave the couch at all, and this is when we started watching supernatural I think because I didn’t have the energy to read. It was hard to focus so I did very little reading and I wasn’t writing anymore.

Jacob: What was that switch like, understanding that this maybe wasn’t something that was ever going to go away? Because a minute ago when you were talking about when you got some acknowledgement that this was all maybe caused by something, there was a look in your eyes like, oh here’s an explanation for everything. Here’s the answer. And that almost seems like a relief, but I’m curious how you felt that this is now a recognition that this is the normal for you, this isn’t going to go away.

Brianne: It’s hard because it all gets tangled up. So one of the things about thinking that holy shit maybe this is physical, is that it means that I can actually give myself permission to rest more and learn about whatever it is that actually optimizes the experience of my body. So up until that point – and I still struggle with this – but up until that point whenever I did diet experiments they were kind of silly experiments. But I also was trying to make something better where it would be fine if I didn’t do it. So I could treat them a little bit lighter and and I pushed through when I was tired, if I just drank a red bull, which sort of works but sort of doesn’t, or had a drink which sort of works but not long term, it didn’t feel like it was part of something bigger necessarily. I don’t know if that’s good language for it. Up until that, I still felt like maybe there would be some mental fortitude that could actually just get me through it. And it’s both hard to accept that that might not be true and also a huge relief to realize that that’s probably not true.

So one side of the work of it is stopping the negative self talk because there’s a lot of it. So no I’m not just like a lazy person who hates all of her friends and that’s why she’s being really difficult to make plans with. It’s a real thing and I don’t know what it’s called yet, but it’s like getting permission. I am allowed to take it seriously and to pay attention and to now devote what little energy I have, because it was much less than I had when I was obsessing about PCOS, but devote what little energy I have to learning about this thing.

So I’m obsessed with storytelling, I’ve always been obsessed with storytelling. And I wanted to know where were the accounts of this experience. Of before you know what it is, because you’re trying to accept your body the way that it is, and probably grieving a lot of things. I’m sure I was grieving that friendships won’t work the way that I was used to or that my career wasn’t going to develop the way that I thought that it would or whatever else it is. It’s like you’re not going to be able to run a marathon one day, not that I specifically planned to, just all of these things are off the table.

Jacob: That idea of a normal person, normal society, which obviously isn’t an actual thing, but that mental ideal you’re not part of that anymore.

Brianne: Yeah, yeah. So I’m grieving that and then looking for stories because no part of me thinks that I’m the only person experiencing things this way. So where are those stories because they’re not going to be represented in the places that I’ve been looking for the exact reason that when you’re experiencing this it’s really hard to get represented. So I read a book about somebody, a memoir written by somebody who had extreme photosensitivity and they don’t know why. So she just lived in a dark room for months at a time because it would flare and then get better. And I enjoyed it, it was maybe a little bit flowery but it was really good because it captured some pieces of the experience.

And then I read this book called Through the Shadowlands which is written by somebody who is a science writer and she went to MIT and I think she was a science journalist. She had a ton of faith in the medical institution and then she started to get sick. And so much of what she was writing I really really related to. It was kind of mysterious fatigue and she had a lot more actual neurological problems, I had some and also one of my reflexes stopped working I found out later. But she physically couldn’t walk. I was too tired to propel myself, but she couldn’t move her legs sometimes.

That book does a really good job of describing the encounters with doctors when you show up and you have full faith in this institution and then they tell you it’s probably in your head. And because of her background as a journalist she went really deep a couple of different times into the history of chronic fatigue syndrome and how it came to be a designation and some of the politics around it and the fact that there’s a huge legacy going back to hysteria of discounting diseases that disproportionately affect women. So MS was called the faker’s disease I think, up until they identified what was actually happening, that there’s a real thing happening in your brain. And there’s a few others I think, I forget the other example she uses. But there’s these things and we go through this predictable cycle.

And then as it turned out for her what worked was mold avoidance. So she went and camped in the desert for two weeks and then her symptoms started to clear up. But then as soon as she was exposed in any way it would come back and she would become very rapidly paralyzed. It was an obvious degradation very quickly and if she noticed it really quick she could shower and change her clothes and she would be back to normal. It was that direct.

And so then she again started researching what does medicine think about this, and the answer is not much. There isn’t a general medical perspective on this kind of thing and nobody’s researching the neurological damage that mold can cause. And it’s not mold, we have to use the word toxin again because it is a fungus like candida and some fungi, not all – so for people who have respiratory problems it’s usually the spores which is the live part of the mold but also some molds produce a toxic byproduct in the literal way. A literal toxin. And so that was a part of it. So she started doing research and you get a little bit tinfoil hat here but when you read the book she does a really good job about it. One of the things is in both cases, when it comes to chronic fatigue research which has gotten a lot more funding in the last couple years and when it comes to mold, is that insurance companies don’t want to pay to remediate every house with water damage and so they have thrown a ton of money into discrediting any research that suggests that mold may cause larger health problems. That’s basically the situation.

So I read that book and thought, that’s interesting what a fun book. And then we went to a wedding in New York And we were gone for a week because I think we must have gone to Adam’s parents beforehand or something. So we were out of the house again and when we were in New York we went out for brunch in Brooklyn and we walked to the pharmacy and I was just walking normally.  I could walk normally for 15 minutes at a time which was new, I probably hadn’t done that in two months. And so we thought okay it might not be anything but what if it’s the house?

Because yes, I just read this book and theres some suggestiveness or confirmation bias going on, but actually what if it’s the house? Because now looking back, the two worst episodes that I’ve had were immediately returning to the house after having been away and now that I’m gone I’m much better again. And so that was when we moved into a hotel. And my sister for a couple of months had been saying there’s someone that she wanted me to see. It was a naturopath that she knew but she said he was a specialist in chronic infections so he does a lot of work with lyme disease and lyme co-infections and he does a lot of work with mold exposure. And the first time she brought him up I thought I’m not going to pay to see this guy, that has nothing to do with me. And then at this point I was up for anything, whatever it takes, sure.

And so she ordered labs for me based on his usual first appointment labs were so I could show up with that. So I got a full lyme panel, I got a full mold panel basically, which there’s a couple of different versions, and then  just bigger bloodwork than my insurance doctor had done. And then when we went back to California that’s when we moved into the hotel. I was still exhausted most of the time so I didn’t really leave the hotel room. I was sleeping and trying to eat the foods that I knew were slightly better for me, and that’s what we did for the first three weeks in October.

I think my first appointment with him was at the end of October. And he said based on my lab results that I definitely have a tick-borne infection, possibly lyme disease. But the testing for lyme disease is difficult for even more reasons, but I definitely tested positive for two different co-infections. And he said “Here’s what this one does, does that sound familiar?” And some of it did, then “Here’s what this one is.” And he checked my reflexes and I didn’t have the knee reflex at all, so when he hit my knee like my foot didn’t move.

And I also had the tremor and that was when we found out that I had POTS which is also a symptom, so it’s postural orthostatic tachycardia I think syndrome, the s might stand for something else. But basically it’s when you change your posture, so when you go from lying down to standing up, your heart rate skyrockets much more than normal people. So when I would stand up, my heart rate would go up to 150 or something. Which is like when you’re sprinting, if you’ve ever paid attention to your heart rate before, that’s a good sprinting heart rate. And it’s super uncomfortable if you are not in fact sprinting. So he said I definitely had that.

We also did a mycotoxin test, so mycotoxins are the toxic mold byproducts.  And all four of the mycotoxins that we tested for were off the charts, but they can’t tell you what is caused by what because basically there’s a bajillion types of mold and mold is everywhere, but there’s a couple different molds that could produce each mycotoxin. Does that make sense?

Jacob: Yeah.

Brianne: So he said getting out of the house is probably a good idea. And he recommended someone to get the house tested to find out what was going on and if we needed help getting out of our lease and figuring out what to do next. And I started treatment for that basically. And we had the house small tested and our landlord said “Well they call it toxic mold to scare people, mold is everywhere.” So he was a skeptic but he let us out of our lease.

And so the guy the doctor recommended was a super aggressive thorough mold tester. Under every window in the back of the house – when you take a moisture meter, a wall should be maybe 11-13% moist – all of the walls on the back of our house were 100%, it went all the way up. So he wanted to drill in there and see what was going on and the landlord preferred that he didn’t do that. So we didn’t get a very thorough test done and our landlord wanted to bring in somebody else to get a second opinion. Just from his visual inspection, the first guy said the house needed work. It was a nice house and it was recently renovated and the landlord had grown up in it, which I think is why it was extra hard for him. But the first inspector said he saw a lot of evidence of past water damage even though they’d obviously done a good job of aesthetically repairing it.

And then his second guy came in, and I wasn’t there for either of them, but Adam said that whenever they asked him questions he didn’t really seem to know what he was talking about. So he was qualified to administer the test because it’s just something you send away to a lab but he personally didn’t know very much about it. And that test came back and just told us what molds were around but no other information.

So we got out of our lease and we shipped all of our stuff to New England because we didn’t want to move anywhere. And we stayed with my in-laws for a couple months, which is a really fun thing to do when you’re in your thirties and married. But basically we thought, oh shit, we know that mold has been a part of the problem because of my personal test results but we don’t know which mold is the problem based on this testing. And can you imagine in a city with a competitive rental market saying before I apply for this apartment I need to get an expensive test done that takes at least a week, and I know there’s five other people who are ready to pay a deposit right now, please pick me.

So all of a sudden renting became impossible because of that and because our experience even with our landlord and a nice house was that he was never going to pay for the level of remediation that would have been needed to live in that house. There’s just no way.

So we thought, shit we need full control of our environment and we don’t know what that looks like. So we were staying there for a while and then I was going through the treatment which is all kinds of stuff. Like getting the mycotoxins out of your body. It all sounds nuts but again I started to feel better, my tremor went away really quickly. And I’d had nerve pain, so separate from the skin pain the nerves in my forearms would just get uncomfortable. It’s not even pain exactly but I couldn’t type and I didn’t open my laptop for three months or something last winter because typing was so uncomfortable because of the nerve pain. So the nerve pain started to go away and I was back on prescription antifungals and taking a bunch of other stuff. And I got a fitbit that told me my heart rate and I was still sleeping a lot and then napping every day.

And then by the time the snow melted, so whenever that was in Rhode Island, I started going on walks. And it was about a one-hour walk every day and some days it was really slow and some days it was more of a normal pace. But they live near a place where you can go walking in the woods and there’s a boardwalk so it’s out of the mud and that was what I was up to. And that’s when I started doing the cross stitch stuff but I don’t need to talk about that much. When I had brain energy I would be coding or stitching or designing and when I didn’t I’d be watching Criminal Minds. That is the show that I watched on my own. I’ve now watched all of Criminal Minds all of Supernatural in the last year. But it was helping.

And the doctor had said that the full lyme test was inconclusive. I definitely had tick-borne infections, but the mold exposure can fuck up your immune system so much that he really couldn’t even say. So he couldn’t really treat those very well directly until we’ve managed the mold. And probably I got so much sicker in the mold because of the other stuff, because I was already basically immunocompromised. So when I was exposed to this toxic thing, my body couldn’t keep up with processing. So that’s still where things are now.

So we got a house and before we got the house we asked for an environmental inspection along with the normal inspection where they check whatever it is about the house. But we had an environmental infection and the guy who came in was an air quality enthusiast. Like he knew a lot about mold and a lot about everything else. He told us all the ways that fiberglass insulation can cause problems and lots of other stuff. He really had a lot to say about air quality, which was good, and he asked to look at our mold test from San Francisco so that he could also just keep those in mind when he was looking at the lab test from this house.

And he told us that this mold that showed up on that test, chaetomium, is one of the toxic molds. There are two main toxic molds and this is one of them. And he said the spores are really heavy so when you do an air test whatever number comes up in the air test is much lower than whatever’s present in the environment. And at the same time my stepdad had his house tested because his guest room is in the basement and we thought it probably wasn’t a good idea for me to stay in the basement right now. So we asked him to get a mold test.

And the cover sheet on his test was just standard information and there was a paragraph that told you the safe levels for all the molds. And then in bold it had two molds, chaetomium and stachybotrys, and it said no amount of these two molds is safe and if you have it you need to remediate. And that was not on the mold test that was done in our house where they found this mold. So now I know there was a toxic mold in the house, I know what mold it was. I know that it causes problems and can cause neurological problems, and that’s what I was having. And now I live in a small village in Massachusetts where the pace of life is much more aligned to my needs. And that’s pretty much the present, thank you for listening to that monologue.

Jacob: So you still don’t really have a conclusive thing if somebody asks what’s wrong with you.

Brianne: Now I say mold exposure and tick-borne illness. I’m still getting testing done. I just had a new lyme panel done and all of my numbers were much better, which was probably a result of general treatment and my immune function improving. But lyme tests are a two-part test so there’s a screening test and then there’s something called the western blot which looks at a bunch of different proteins that show up on the bacteria because they can’t test for it directly. And my screening test was the same even though my western blot results were lower, and the doctor thought that was interesting. So all of these numbers have gone down but this thing is still high and if this were causing this than these should be proportional.

And so now I’m getting tested for some other infections that are basically sister infections to lyme, we’ll say. Because there are other, I don’t know what to call it, we’ll say bacteria species but that’s probably the wrong word, but borrelia is the family name and so lyme is borrelia burgdorferi. But there’s other strains of borrelia that you can also be infected with. So that’s what I’m being tested for now.But the main thing is that if I had pushed harder with my insurance doctor, she would have written down chronic fatigue syndrome. Or she would have written down fibromyalgia. And then I would be able to say that I had that. But I would also be much sicker than I am right now, because one of the problems from my perspective with those two diagnoses is that they’re a way to satisfy the part of you that wants to know what’s wrong, but also a way to get someone to stop coming back because they don’t have good treatments available. To my knowledge, there is no medication for CFS. And there are medications for fibro, and I think they can help people on the pain side certainly. But anybody who has improved their quality of life, and it’s all anecdotal, it hasn’t been from something that was an MD-prescribed fibro medication. So getting a diagnosis is only medium doubtful.

Jacob:I’m wondering, because you’ve used terms like tinfoil hat, I don’t think you’re a person who naturally distrusts the medicine industry, but you could see how someone going through this would very quickly go off the deep end into conspiracy theories or naturopathic remedies. But how has your perception of doctors and traditional medicine evolved over these few years?

BrianneI definitely started at a low point of trust because of everything else and really I think that the way that western medicine works is that it is really good for acute problems. So if you go in with a broken arm they probably know what to do because it’s obvious, or if you’re cut. Although I will also say that I fell off my bike in college and I tore open my foot really badly and I had to get stitches, and then the stitches didn’t take so I had to have wound debridement surgery and new stitches a month later. So the kind of thing that I think that doctors should be good at in my own experience they can also be not good at.

But I think that there’s a lot of different stuff going on. So with western medicine I think things are changing really quickly in terms of how we see professions in terms of prestige and class and how those all interact. But I think that historically doctors have been in a position that is not to be questioned no matter what, and so I think there’s a huge class dynamic about who even feels comfortable asking for a second opinion or pushing for other options outside of whatever their doctor tells them. So that is something that I see a lot more clearly now than I would have.

And when I talk to healthy people and I try to explain it, they don’t get why you wouldn’t just go to another doctor. But if I go to another doctor I’m going to have the same results. I’m happy for you that you have only had positive interactions with your doctor, where you go in with a problem and then you leave with an answer, but that’s not how a lot of people experience this system.

And I also think that the pharmaceutical industry causes huge problems because the things that get researched are the things that can be patented and then make a lot of money. And that leads to this problem with doctors where even if they believe that lifestyle interventions will make a difference they don’t recommend them and in fact will disparage them. Dietary changes are kind of disparaged by a lot of people in the medical community and the same with supplements and other stuff like that. So they’ll say “Well, you could do that but you should do x y z.”

And I think it’s a cycle that there aren’t enough doctors recommending that kind of stuff and doctors don’t recommend it because it’s not well researched and it’s not well researched because there’s no money for it. And so there’s a ton of anecdotal evidence from individuals who can say “I was diagnosed with fibromyalgia and now I’m totally better and all I did was only eat sweet potatoes for three years,” or whatever it is.

So naturopaths in Canada can’t order labs and they can’t write prescriptions. But it’s different state by state, so in California naturopaths can order labs and they can prescribe at a pharmacy. And so I think that’s actually a much better model because it’s somebody who is interested in data which really really matters but they’re also actually able to take the time to talk to you about how your habits and your diet and your whatever are contributing to what’s going on. And in traditional medicine that’s not a part of it.

But then the flip side of that is that anecdotal evidence gets too much credence and any blogger can write about anything, and people will try it because they’re desperate. And I think that’s also a huge problem. And that’s the tinfoil hat part of it where I’m willing to try anything, because why wouldn’t I? But when I did the candida diet, I don’t actually know what part of that intervention made a difference, because it’s unknowable. There would have to be a hundred of me, or a thousand of me, or ten thousand of me going through the exact same thing to isolate variables. And that’s just not possible. So I think that’s hard.

I have one more thought on this. I have a lot of monologues, thank you for your time. I think that medicine is not in line with academia. So when you read books that are written by professors, and gut bacteria is a really easy example because there’s a ton of books that have just come out about gut bacteria and your health that are for the general population. Like pop science kind of books. And they’re interesting and they’re written by professors and none of that stuff is reflected in medicine yet.

So something that happens in alternative medicine is that naturopaths pick it up faster, functional medicine practitioners pick it up faster, and other health coaches and fringe people who are less regulated pick it up faster. I don’t know why that’s true about traditional medicine, maybe it’s because it’s such a long education process that it’s not very agile, but it’s not very agile and so it’s no longer aligned with science. And it’s the same as the stuff around diet where it looks like sugar is more of a problem than fat and there’s lots of pop science media being created around this but I think that some of that science is pretty sound and most doctors aren’t telling people that yet. They’re still putting them on statins if their cholesterol is high and that’s not supported by current research. Does that kind of make sense, are you with me?

Jacob: Yeah yeah yeah. I’m wondering, do you have an ideal now in your mind of what your life could be like? In your mind, what is the best you can be for managing this?

Brianne: I think I’m a pretty optimistic person but I kind of expect that it will always be true that I need more sleep than other people and that I can’t push it for more than three days at a time. I can go to a wedding and kind of burn myself out and I will have to rest after. It’s probably not a good idea but I really like socializing so my mental health will suffer if I don’t. But I think that will always be true.

What I would like from where I am right now is just that it would become more predictable. I had a really good day today, I feel fine today, I feel like a normal person today. But yesterday I woke up at 4:30 and I couldn’t get back to sleep. And so I was in pain all day because I didn’t get enough sleep and there was just nothing that I could do about it.

And so when I think about work stuff, I don’t think a traditional job is ever going to be for me, which I kind of thought anyway. But I can’t go to an office nine to five because it hurts. It’s not good for my body to do that. And I think I’m a pretty smart person and when I’m functional I’m an optimizer. I work extremely efficiently and I get a lot more done than other people so I can provide value to a whatever. But working for somebody else, I don’t know how I could possibly quantify that because I cannot tell you when that value will be provided. And if I have a deadline I just can’t guarantee that I’ll make it. And so I would like more predictability in terms of that.

If I choose to throw off my sleep schedule because I want to do something I’ll know that there’s a price to pay, but if I’m doing everything right. There’s this idea that that’s even possible which it probably isn’t, but if I’m only eating the right things, and getting in a bedtime routine, and I’m having an infrared sauna every morning which is a thing that I won’t even get into. If I’m doing everything exactly right then at least it will become predictable. Right now that is what the best case scenario feels like. And I hear it, that is not what other people would think of as the best case scenario, but it’s pretty good if it’s predictable so I don’t know.

And I’ve been really lucky because I have had a safety net through all of this. And I talked to someone recently for a future episode who was in a similar position, who took a year off and went away and got to establish an optimal routine for wellness. But most people can’t do that and it’s really hard to qualify for disability, like I couldn’t be on disability right now with how I would describe my situation. That’s a reason that people push for diagnoses like chronic fatigue and fibromyalgia which are totally valid and difficult.

Jacob: It strikes me how easily someone in a different social situation, from a different cultural background, with the exact same things that you went through would just be very quickly written off as just lazy or complaining.

Brianne: So for me, the larger scale with this project is that’s why I like talking to people. There are so many commonalities in that level. The number of people who are diagnosed with and then treated for depression for maybe quite a while when that is not in fact their problem. And then that just makes everything else worse because they think that there’s – even if you are told and can believe that depression isn’t your own failing, which it often feels like – you think your body is not working but it’s because of something going on in your brain so you should be able to just force your body into operating. It’s a horrible feedback cycle. And that’s incredibly common and it’s like I said, it’s hard to talk somebody through it because when you’re listening and you try to relate it to your own experiences and you don’t have any experiences that relate it’s confusing.

Jacob: In a future episode, because I was listening to a couple, someone uses the term “flat narrative” to describe it. Because the way we think about diseases, even something major like cancer, is it sort of crescendos and there’s a climax like a movie where it gets diagnosed and it gets worse and the treatment’s there and then there’s remission and life gets back to normal. And that’s not a thing that happens with chronic illness, it’s just work every day of figuring it out and managing and going through life.

Brianne: And that’s alien to people, and to employers, but also to family members. It depends who you choose to live with and how that works, but I think with your extended family or if you’re an adult with parents who you don’t see all the time, they will have that same expectation. And they start to forget so even if they’re the most empathetic people in the world, people forget about the accommodations that you need and three years have gone by and you get tired of asking for them. Which sounds… I don’t know what that sounds like, but I think it sounds funny or it sounds silly.

But when there are people that I see regularly – I’m not offended when someone that I don’t see very often doesn’t remember – but with people I see regularly I get frustrated because I can’t stay out past nine, so please do not try to make plans with me that go past nine. On special occasions I will do it and pay the price because it’s worth it to spend time with people that I care about and can’t otherwise see, but in my day-to-day life this is actively painful for me. I’m usually hiding it, and hiding it in my case may be the wrong word, but I’m just not talking about it because it’s not interesting. It’s not a part of what’s going on.

I had a friend visiting this weekend and she left this morning and we didn’t stay up late at all, but because I woke up at 4:30 yesterday. We went to an art museum in the afternoon to have something fun to do, and it was awesome because I like going to art museums, but I was in pain the whole time because I didn’t sleep well. And she had nothing to do with that so I just wasn’t talking about it because there wasn’t an accommodation that I wanted. But it’s always happening. It’s always happening and maybe I’m coping well or not well.

And a different part of it, in addition to people thinking that it’s gone away because that’s the only way that they know to think about illness, is also there’s a lot of criticism. And I think this is rooted in ableism, but people want you to be positive all the time. So if you’re trying to talk about it in a way it’s says “Listen, I’m doing the best that I can and I do think that a lot of things will continue to improve compared to where they were a year ago, but I don’t think that I’ll ever be able to just forget about it and eat and drink and sleep however I want. That’s not a realistic expectation for me.” And that’s fine, but it is painful for a lot of people to think about because most people think “Oh I could never do that, I could never stop drinking and stop eating sugar and stop eating grains and put myself to bed at ten because it sounds like it sucks.” And it does suck when you’re not used to it.

But people think that you’re being negative when you talk about it that way. So if I just say, “No, I’ll always have to do this.” People will say “No, you’ve got to be positive, that might not be true.” But that’s not supporting me, that’s just easing your own discomfort when you say that. I don’t think I’m being pessimistic but it’s so far outside of people’s normal understanding of illness that it’s hard. Does that make sense?

Jacob: Yeah. Even I know some of the story, but just hearing it all recounted, it seems like you’ve spent the last several years trying to explain to everyone in the world around you, in your life, doctors or friends or coworkers, this pain that you’re going through, that your body is experiencing and not having the vast majority of them listen or want to hear that. And I can only imagine how incredibly dispiriting and frustrating and the mental and emotional toll that takes beyond all the other physical stuff.

Brianne: It’s exasperating, I think, is also a word. And that’s what I do love the internet for. Everyone that I follow on twitter – well I follow you on twitter which makes me feel really connected to Halifax. Or really disconnected from Halifax politics because you do a lot of subtweeting about politics that I don’t understand but you know – almost everybody that I follow is in the disabled community or in the chronic illness community and then just other kinds of activists. So my whole twitter experience is really great for me because it’s people… I’ll say griping but I don’t mean it in a negative way.

It’s people who are just looking to put words to an experience that they’re frustrated with in a place where someone else will get it. Because it’s just not necessarily true that you’re surrounded by those people. And I like twitter because of the demographics of twitter. I’m also in some facebook groups that are on chronic illness, and they’re huge and facebook skews differently now I would say than it used to. And so most of the groups that I’m in, there are good things and there are bad things.

But if you put something out there on facebook, people will respond to it, which is fine and can be really helpful for some people. But for me, what I like about twitter is that people might respond, but it doesn’t matter if they don’t. It’s just a place where to go when I need to try and describe this feeling or this situation, and I can put it out there and someone can like it and maybe people will respond, but the act of trying to carve out the language feels really important to me. And it’s a good space for that because it’s all language.

So much of the things that I did before and kind of still do occasionally, that’s what storytelling was about. When I started the event it was about these experiences that were really painful for me because I felt like I was the first person to go through them. So my mom had cancer when I was in college or my dad died when I was 22 from alzheimer’s and it was incredibly isolating because nobody around me had been through it yet. But most people will go through some part of it and once I had some distance on it, it felt really important to build a language to talk about it so that other people knew that they were not also alone in it. Maybe that sounds lofty, but that was the goal and it worked and it is working, it’s still happening.

And so with chronic illness, there’s lots of awesome people but most people are so fucking exhausted, and I have been too, that it’s hard. It’s hard to say “Okay family, I have been in pain for days and I’m shaking and I can’t type because my hands hurt and I need you to really flex your fucking empathy muscles and understand what this feels like.” You have to do outreach to do that and it’s not their fault, they don’t have a context for it. But there aren’t stories to share about it, there aren’t very many books. I really like Through the Shadowlands but there aren’t that many books that you can share and there aren’t that many essays that you can share and there’s no media that you can share.

There’s an iffy documentary about mold and there’s an okay documentary about lyme and I have found them really helpful for myself and have shared them with other people but they don’t really get to it, they’re not for everybody. And now there’s a series on netflix called Afflicted which everyone’s very mad about and I have not watched because I do not need to be that mad, but it is not creating empathy for people living with chronic illness so it is not a resource.

Jacob: Is that what you’re hoping for with this podcast series? Is that the goal?

Brianne: Yeah and specifically what I would like, because I anticipate that I’ll be talking to people with chronic illness and then people with chronic illness will listen to it, and writing is too much I am not good at it right now, so I’d like to create resources that people can share. And this is how I felt when I read Through the Shadowlands, I felt like this captures my experience. And I want people to read it, so I don’t have to do the labor of explaining it to them. But it was a book, and asking someone to read a book is a lot. But asking someone to listen to a podcast, one episode of a podcast, is not that much. Most people can do it. It’s between an hour and an hour and a half.

And so I hope that people will listen to future episodes and see their own experiences when they have not had the words to explain what it felt like. So you might think this person did a really good job of explaining it, and their diagnosis is similar or this part of their experience is similar, then all of a sudden it becomes sharable. And also, people can feel less alone when they here that. But they can share it with other people without having to do that same work. So that is the thought. Do you have, like, five minutes to tell me how you’re doing as a person?

Jacob: Yeah, is this going into the podcast?

Brianne: No. I mean, it can. Do you have anything you want to tell me on the podcast? I can tell people what you’re up to and how to find you, and then also just to tell me, and then you can decide if you want the podcast to know about it.

Jacob: If anyone desperately wants to find me, I do not talk about chronic illness, usually it’s municipal politics in Halifax. But they can find me on twitter at rwjboon.

And I’m not sure when this comes out, but if it’s in the next few months then I’ll still be involved with a podcast that we’re doing for The Coast, Halifax’s alternative weekly newspaper, celebrating its 25th anniversary. It’s called 25 for 25, bit of a ripoff of 30 for 30 but we’re not saying that.

Brianne: You just did, semi publicly.

Jacob: Where each episode, my cohost and I (Tara Thorne, another editor at this paper) look back at a different year sequentially, chronologically from the past 25 years of local Halifax history, news stories, businesses that opened or closed, big things that happened, news and the arts.

Brianne: Is there an episode about donairs? 

Jacob: There will be one coming up, we haven’t reached the point where Halifax made donairs the official food, but we’ll get there. They’re all available so far on itunes and stitcher and soundcloud if you search 25 for 25 we’ll come up. I doubt it’s interesting at all to anyone who’s not from here, but maybe it is and if so you can go give us a nice review maybe, that’d be nice.

[guitar riff]

Thanks for listening to the first episode of No End In Sight! I’ve already got some great stories lined up for future episodes, so make sure you subscribe in iTunes, Google Play, or wherever you get your podcasts.

If you want to commiserate with me on twitter, you can find me at bennessb. And if you want to share your story with me, just click my bio link to schedule an interview. I’d love to hear from you!

Last thing:

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. And for me, cross stitch is a perfect way to occupy my mind and my eyeballs during flares when I mostly watch long tv marathons. I’d love it if you checked us out at digitalartisanal.com

Looking for transcripts? Episodes 1-47, 54-57, and 62+ are fully transcribed.
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