Nora talks celiac, IBD, c. diff, fatigue, and planning for college and adulthood while chronically ill.
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
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Today I’m talking to Nora Helfand about celiac and IBD and c. diff and making plans for college and adulthood while chronically ill.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
Brianne: So, hello.
Brianne: I like to start by asking people about their health as a kid.
Nora: Okay. I want to say I was pretty healthy or at least, there was no one issue that particularly stood out as something that was super unhealthy. I was born with no issues, and then around six months of age, probably I think it was right when I started solid foods, actually I became constipated.
Nora: I don’t know how common that is for little babies, honestly, but you know how babies will make that face when they’re pooping. And I would make it and then start crying cause it hurt which is kind of cute and sad at the same time.
Brianne: Right, right.
Nora: Yeah, I’ve dealt with constipation for the majority of my life, which is interesting, I guess. The other thing I would say is… I don’t know how to put this exactly. Maybe around three or four years of age. I think how my mom describes it is that I didn’t have a body.
Brianne: Interesting. And what… I guess I have two questions now. So how would you interpret… what do you think your mom meant when she said that? And then what did that feel like for you, as best as you can recall about that age?
Nora: I think it was just low awareness of my body or what was going on. And I was… I think described by some people as being kind of quiet or checked out. Looking back, my memory is obviously going to be kind of limited, but I think I’d describe it more as overwhelmed, maybe. Just I would get overwhelmed with too many… too much input or crowds or whatever, but I don’t… obviously I wouldn’t have been able to express it that way as a child.
Brianne: Yeah, totally.
Nora: But now when I… I don’t know when I see kids playing or I go to the playground near my house, I realize most kids are not really like how I was as a kid. They’re just crazy and happy all the time and begging for attention. And I don’t feel like I was a lot like that.
Brianne: Yeah. Yeah. What might look like kind of withdrawn or introverted or I don’t know, whatever other words we use to try to classify little people who can’t communicate what they’re actually feeling.
Nora: Yeah. So those are the two things I would say.
Brianne: And then, okay, so lots of constipation. Did you have… I guess again, as a kid, you don’t… it’s kind of… I understand how difficult it is to reclassify these experiences, but do you remember there being any pain associated with digestive stuff?
Nora: Oh yeah.
Brianne: Yeah, definitely.
Nora: I don’t know when I started to be aware of it. I think I toilet trained a little later than I should have. I might’ve been almost four years old, and part of that could have been anxiety around the discomfort of going, but yeah, in grade school I remember very distinctly, I had so much pain and fissures and just so much stress around having to go to the bathroom. And, I remember I would take hot baths and just try to relax. And, it was just this huge drama thing every night for awhile. Just, “Am I going to be able to go? Is it going to be really painful?”
Brianne: Yeah. And that of course would create other anxiety and other issues when you’re like, “What do I do? And I’m anticipating something that’s going to be hard.” And all of that junk. Bodies. Okay. So that was your baseline. And then, was there a moment when you started to look at your health a little bit differently, or when things started to change?
Nora: I mean, for me, there was a very clear sudden tipping point where, beforehand I was mostly healthy, but with some kind of weird things starting to surface, and all of a sudden I was very sick.
Brianne: Yeah. So what was that tipping point?
Nora: I was in high school. It was my senior year, and pretty much right at the beginning of that school year, I started having a lot of diarrhea and weight loss and low grade fevers, night sweats. And it really came on pretty quickly. Although I will say I had had on-and-off bouts of diarrhea in the past. I know we talked about constipation, but it would occasionally sort of slip. But this was like all of a sudden I felt terrible and terribly fatigued, and in high school, I was a cross country and track runner, and I would do distance running and track. So it was this shock to me where I actually won my first race of the season that year. It was like, I think the very end of August, 2011, and I was really excited and so pumped for that season. And I had no idea at that point that I would never run again after that point, at least not competitively.
Brianne: Yeah. And that would be… it’s interesting to me, cause I’ve talked to a few people now who were athletes in high school or athletes in college. And it’s such as a strong… it can be part of your identity, but also such a strong verifier. Cause when your health starts to change, it can be really easy to doubt it. Right. You’re like, “Oh, is it really that bad? Oh, whatever, whatever.” And you’re like, “No.” In your example, “No, I won that race. I was performing at a level that I physically cannot perform at anymore, and this is a definite sign of that.” Oh, it’s hard. Okay. So things… all of that stuff started to happen. And did you go to the doctor right away?
Nora: Yeah, and here’s kind of the weird thing. So, I say things started in September of 2011, but something weird happened like a month before that. Every, summer, my cross country team would go to a week long running camp in the mountains that was pretty intense. And, I had gone two years before with no issues. So this year 2011, I suddenly just felt really, sick while I was there. I mean, I think I felt like maybe I was starting to get sick or hadn’t gotten enough sleep not long before we left, but it was like we got up there, it was at altitude obviously, and I just felt terrible. I had these awful headaches. I was dizzy. I was nauseous and felt like maybe I could be feverish, I think. And like I maybe shouldn’t be at a camp like this.
Brianne: Yeah. It was not a good place for your body at that time.
Nora: Probably not. And I mean… obviously I just had no reason to take it particularly seriously.
Nora: I guess just cause it was not my experience at that time that you could crash yourself and get some massive chronic illness that you have to deal with forever. That was not obviously in…
Brianne: Right, not even on your radar.
Nora: No. but I ended up completing, basically one of the toughest running camps in the country while being really, really sick. And I started throwing up, having diarrhea, and all of this stuff, and I returned to Portland where I live, afterwards and actually started feeling okay pretty quickly. It seemed to clear up, but just in case I had gotten some weird infection or something, just cause of the GI symptoms, I went to see my pediatrician. And I think they might’ve done a stool test or something, and they did some blood tests. And I had been anemic in the past, so checking whether I was still anemic and stuff. And everything came back normal except one thing, which was a test I didn’t realize they had done. But we got this call I think a week or two later. and they said, “Hey, everything looks fine, but your celiac test came back positive.”
Brianne: Okay. Did you… had you heard of celiac at that time? Question one.
Nora: I think maybe. Yeah. I did because I knew one person who had it, and I just knew that he had to buy weird food at the grocery store.
Brianne: Yeah. One of my friend’s younger sisters had celiac, and so I had heard the word from when I was probably in middle school. But I didn’t know what an autoimmune disease was or what it might actually be doing besides meaning that you had to buy more expensive food.
Nora: Well, that is a big part of…
Brianne: Yeah, totally. So they told you, you looked positive for celiac. Do you know, was that from a blood test… from the antibody test or had they done a scope?
Nora: Yeah, I think it was the antibody they do for celiac, which is tissue transglutaminase or TTG. I’m pretty sure that’s what they had done, and I don’t even know why they… I’m not sure why they did that test.
Brianne: Yeah, at that time.
Nora: I would have to ask, and they didn’t really know what to do with it. Cause they were like, “We’ve never had one come back positive.”
Brianne: Yeah. “It’s finally worth it. That we’re running this test.”
Nora: But, let me see, where was I?
Brianne: So they had run a lot of tests. This was after you got sick at the camp and before you became sick again, was this in your kind of in-between
Nora: time? Right. Yeah. So that came back and I didn’t really take it that seriously because for one thing, they weren’t taking it that seriously, but they did refer me to see a pediatric gastroenterologist, And that was either set up for the following September, or once I started actually getting ready sick, we moved it up. But before that I felt fine pretty much for the month of August. I went back to my normal training for cross-country and, wasn’t thinking much of it. I felt mostly okay. I felt mentally a little weird and different, which is really interesting. On my off day from running, I would feel kind of weirdly depressed, which did not happen before. So feeling like my mind was a little off, but otherwise okay. So then yeah, we get to September and I’m starting to feel really sick. It was like, “Okay, well, I’ve got to see that gastroenterologist.” And I think it was probably within 10 days or something of me being so sick that I had an upper endoscopy, which is when they stick a tube down into your stomach and the very beginning of your small intestine and poke around in there and take biopsies and… I realize for celiac in particular, really any auto-immune thing, it’s a very rare story to be worked up for it that quickly. I think for most people it takes like years to be even taken seriously.
Brianne: Yeah. Yeah. I mean, kind of like you said, you don’t know why they did that blood test and that’s totally unusual and definitely unusual for celiac that people are even looking at it at the beginning.
Nora: I’ve been recognizing, some things about my experience with this have been kind of atypical.
Brianne: I don’t know if there’s a typical though. It’s like…
Nora: That’s true.
Brianne: It’s funny. There are patterns, but there are so many variations to those patterns that like nothing means anything. That’s what I’ve learned from this podcast. Okay, so they… yeah, think about that. So they did the scope… so they did the scope.
Nora: Yeah, and they found a little bit of… what they’re looking for with celiac is villus blunting, which is… the villi are these little finger things that digest stuff in your small intestine, and when you have celiac, they start to atrophy. The easiest visual is that the fingers get cut off. They become really stubby and don’t absorb nutrients right.
Brianne: And specifically…
Brianne: No, I’m sorry to interrupt. Just specifically, because as an auto-immune disease, that’s what’s being attacked by your immune system, is the little villi… villi? The little guys.
Brianne: V-I-L-L-I. Sorry to interject. So that’s what they’re looking at when they biopsy.
Nora: Yeah and they found that I did have some blunting, although not very extensive. And so they diagnosed me with celiac disease and said, “Well, go gluten free now.” Which I was extremely upset about. That was… I loved food.
Nora: I mean sometimes before my… not even necessarily before my races, but just in general, I would carbo load and just have bowl after bowl of whole wheat pasta. And I liked going to the pizza place after practice and it was just… I was not really excited to not be doing gluten.
Brianne: Yeah, which is fair. It’s a huge adjustment. It’s a huge adjustment. I eat gluten-free now. And it helps, it makes a huge difference for me and my health also, but it’s not like, “Oh, this is a casual and easy change that makes my life 100% easier every day.”
Nora: No, absolutely not, but here’s where things start to get interesting. I went gluten-free, and I kept getting worse.
Brianne: That is interesting, not expected for celiac or standalone celiac, I guess.
Nora: No, not at all. In fact, I was doing so poorly, I developed these weird kind of nodule things on my lower legs.
Brianne: On your skin, were they external or internal bumps?
Nora: They were external. It started as a quote, weird bruise, and I showed it to my dad and he’s a physician and he’s like, “That’s not a bruise.” And I’m instantly rolling my eyes because I think he’s blowing it out of proportion or something. But it turned out he knew exactly what it was, although I didn’t know yet. And, I didn’t find out until they had already started spreading, like growing and hurting a lot.
Brianne: And hurting. That was going to be my question. So painful and I kind of… visually sort of like a bruise situation.
Nora: Yeah, just looked kind of like a discolored, pretty much flat patch of the skin. And I think that… I don’t think I would grow any hair on the places it was. I think it was kind of like flattened out.
Nora: And they became extremely painful. I couldn’t touch them. It felt like I had basically a secondary burn there or something and would especially hurt if I stood up, or walked, and I was having trouble getting to the bathroom and already was having to go to the bathroom significantly more than I had in the past. So this period is kind of a blur for me. There was a lot of testing, a lot of ER trips and freaking out. The stuff on my lower legs ended up being erythema nodosum.
Brianne: Okay. And what is that to your knowledge?
Nora: Oh man, I…
Brianne: It’s okay. It’s okay that we’re not scientists.
Nora: Yeah, I know. I kind of don’t remember what it is, but I do know that it’s a complication. It’s not an uncommon complication of inflammatory bowel disease.
Nora: And so I think literally like a month after I had gotten the celiac diagnosis, I was back in the OR or whatever it was, getting a full colonoscopy and a repeat upper endoscopy. And not only did I have IBD, but it was so bad that they couldn’t even make it to the end of my colon. Because normally they go all the way to the terminal ileum, which is where your small intestine meets the large intestine.
Nora: They were like, “We can’t even go that far because this is so inflamed that we’re scared we’re going to screw something up or perforate you or whatever.”
Brianne: There’s just not enough space basically with the amount of inflammation. Or like, room to maneuver.
Nora: I don’t really know how it works.
Brianne: The mysteries of the colon.
Nora: But yeah, it was… it was bad.
Brianne: Yeah. And so… I kind of already know part of the answer to this, but they told you, you had IB… yes, IBD… there’s a lot of acronyms in these kinds of conversations. So they told you that you have IBD, and then what did they want to do about it? What was the treatment protocol they gave you?
Nora: Was instantly blasted with steroids.
Brianne: Sounds right. Did they help?
Nora: No. Yeah no, they didn’t help. They made me completely crazy immediately. Cause that’s what steroids do.
Brianne: Yup. They can have a pretty strong impact on everything about your life.
Nora: Yeah, no. So that was just kind of a shock. I mean, it’s one thing to be dealing very suddenly with this severe illness that you’re told is going to be for the rest of your life, but then to not even feel like yourself or recognize yourself on top of it because of these weird hormones that they’re blasting you with… it was just a very confusing and traumatic time.
Brianne: Yeah. I believe it. And in high school, which is already a very confusing and traumatic time.
Nora: I, you know, and I had a good time in high school, honestly. I went to an all girls Catholic school and I think it was a really good environment for me, honestly.
Brianne: Yeah, it was a good fit.
Nora: Yeah, especially like… I liked doing sports, and I would do sports pretty much year round. So I had a niche, and I liked my friends, and I liked generally how my life was going. So yeah, not that there’s a good time to get sick, but particularly, I was a senior in high school. And that’s when you are really starting to establish independence and strike out in the world and decide, where are you going to do… or sorry, what you’re going to do, where you’re going to go next.
Brianne: Yeah. Yeah. Absolutely.
Nora: And I just got completely blindsided by this.
Brianne: Yeah, yeah, totally. You’re right. I mean, you’re supposed to be making decisions about what you want your life to look like. And you’re like, “My life has become totally unstable. I would like to focus on that, I guess.” Maybe not, “I would like to.” “I have to now focus on that instead.”
Nora: Yeah, well, I mean, I didn’t want to, and I applied to college. But it was so weird because I was so fatigued from this and I think abnormally fatigued. At least I knew my case was severe, but, the fact that fatigue and just crashing from small amounts of activity was having a bigger impact on my quality of life than having to run to the bathroom or find bathrooms.
Nora: It didn’t have… I don’t feel that I had that much urgency or… I don’t remember having a lot of accidents or anything like that. I just remember being really, really tired.
Brianne: Yeah. Which is also a huge… I mean, it impacts every part of your life when your focus and cognitive fatigue and physical fatigue. Everything just gets harder. It’s like playing on hard mode.
Nora: Yeah. And I couldn’t really even care for myself. And I had been thinking that I would do… that I would run or do athletics in college. And within the space of a few months, I suddenly was like, “What if I just can’t do that?”
Nora: And I don’t want to pick the next step of my life based on planning to do something that I won’t even end up being able to do, but it was just so not enough time to figure out where I should actually end up next.
Brianne: Yeah. And how was school itself going? Were you missing a lot of school or were you having trouble… I mean, maintaining school?
Nora: Yeah, I was, I was missing like every other day. I think I would go, and then the effort of going that day would knock me out for the next day. And I was sleeping up to like 14 hours in a day or something. And the school was very good about accommodating me, and they adapted some assignments and deadlines and they lowered my course load a bit. So that was all good. I didn’t have a lot of issues there. But yeah, I was just kind of, not really all there at that time.
Brianne: Yeah, of course. It’s not really your first priority when your body is doing that. I don’t even know what to call it. When your body is not behaving the way that you expect and needs a lot of care.
Brianne: Okay. So you were… so did you apply to college? Did you end up… and did you end up going to college? Did that make sense at the time?
Nora: So, yeah, I applied to college. I actually… I wrote my essay for the University of Chicago in the hospital. Cause after three months of this, I got bad enough that I was hospitalized for a week, and I received a biologic drug in the hospital that actually helped a lot and started kind of reversing things. Yeah, while I was there. I mean, they’d just blasted me with steroids again. And, so for a couple of nights, I was practically up all night and…
Brianne: Yeah, just wired.
Nora: Yeah, just needing to do stuff. So I was like, “Okay, I’ll bang out this essay about Plato or whatever.” So…
Brianne: Sure. Whatever, just some light philosophy.
Nora: Because that was… the University of Chicago has really weird essay prompts. And so I think the one I wrote about was, “How is Plato like Play-Doh?”
Brianne: [Laughs.] Great. Great.
Nora: So, yeah, anyway… wrote something about that, and it ended up getting me into the University of Chicago.
Brianne: Cool, cool.
Nora: …which I was not really expecting. And obviously I didn’t find this out until the following March.
Brianne: Right, of course.
Nora: By which time I was doing a lot better physically.
Brianne: And what do you think created that? So you had been pulsing steroids, it sounds like, when things got really bad. Did you stay on a biologic? Were you on a regular infusion schedule?
Nora: Yeah. Um, for a few years, yeah, I was on Remicade, which you do get infusions every four to eight weeks, just depending on how much you need. Eventually I developed, not antibodies to the drug, but I think anti-nuclear antibodies. I had a low level. I’m sorry, my phone is ringing. It’s a pharmacy, of course.
Brianne: Not now.
Nora: Now that we’re talking about drugs.
Brianne: Yeah, because that’s one of the problems with… I know Remicade specifically, but I think biologics in general is that your body can basically adapt to them in unusual ways, and they become less effective.
Nora: Yeah, I actually wasn’t losing effectiveness, but I had developed muscle pain at some point. And since I had kind of low level signs of like, “Oh, you might be at risk for drug-induced lupus or something like that.” They were just like, “Well, maybe the Remicade’s causing it. We may want to switch you out.” So I ended up on Humira, and I’m actually still on it. I’ve been on it since 2013.
Brianne: And I want to hear more about that, but I also want to ask: had you… what were you finding with your diet along the way? Because I’m guessing… so after you get diagnosed with celiac, you cut out gluten and that… did that stick?
Nora: Yeah, I kept doing it because like…
Brianne: You still had celiac.
Nora: Right. Apparently. I mean, that’s actually… it’s interesting cause I may get a second opinion on the pathology soon, and that’s honestly… I mean, it’s been almost eight years since that report, but some doctor is disputing it now.
Brianne: Yeah. So you don’t know for sure. but yeah. So what else did you learn with diet? Cause obviously, when you’re having problems with digestion, it makes putting food into your body difficult, right?
Nora: Yeah, no. Yeah, let’s see. I think… so back when things were completely out of control, before my first hospitalization. we were… I say we because I was still a minor and was kind of making all medical decisions in tandem with my parents.
Nora: I tried… I think we tried to do an elemental diet briefly cause my dad had read some paper on pediatric Crohn’s and how sometimes it could be put into remission just by drinking these kind of pre-digested formulas. And I think I tried that for like a week, and for one thing it tasted disgusting, but it also didn’t have any impact on my symptoms and we kind of figured if it didn’t start to help pretty quickly, it wasn’t going to help.
Brianne: Right, and for the effort, it probably wasn’t worth… effort and cost, I’d imagine, it wasn’t worth the experimentation.
Nora: Right. I think quality of life is another thing because it really sucks to not be able to eat anything and to constantly be drinking stuff that tastes horrible.
Nora: But then right after that, we tried the specific carbohydrate diet, which I don’t know if you’ve heard of it. I mean, it’s…
Brianne: I’ve heard of it, but I don’t know all the details. Cause it’s about hot… it’s about avoiding like low quality carbs and stuff. Isn’t it? Is that right? Or like simple carbs?
Nora: Yeah, It’s… well it’s about avoiding pretty much any complex carbs or…
Brianne: Okay. The opposite of what I said.
Nora: Yeah. Yeah. Simple carbs are like the only thing allowed. And you can do as much fructose or glucose as you want, as long as it’s not a starch, basically.
Brianne: Okay. So avoiding starch more or less?
Nora: It’s got some similarities to paleo and GAPS if you’ve heard of GAPS. And so we… I started doing that. And I want to say I started that maybe the middle of October, and by the end of November, I was in the hospital being told, “We will probably have to remove your colon if you don’t try these biologics and hope for a miracle.” So…
Nora: I was pretty much not sold on diet at that point as something that was going to treat my disease.
Brianne: Yeah. Yeah. Cause there’s two pieces to this, right? There’s figuring out if there are foods that are specifically aggravating that you want to just avoid. So, “Can you prevent making things worse?” And then there’s like, “Are there dietary options that will actively improve things?” Maybe. Maybe not.
Nora: Yeah, no. I think diet has largely become about damage control for me.
Nora: I haven’t felt that it’s ever helped me round a corner on something or attain a new level of health, but, it’s been more like, “I ate this thing and it meant that I could not focus for the next hour or I got some massive headache and reflux or something from it.” Ao figuring out if a food is causing that… obviously you want to figure it out and avoid whatever that food is, but yeah, it’s never been the whole picture obviously.
Brianne: Yeah, totally. okay. So I just was curious about how that all fit in. So you were on Remicade and you got into the university of Chicago. I feel like that’s kind of where we were chronologically before I took us on a detour.
Nora: And this is so… this is such a long… I mean, I kind of want to interject here and say that my history has gotten so kind of convoluted and complicated that no one doctor really knows it super well. And in the past year I hired a patient navigator to take my whole history and comb through it and try and research more options.
Brianne: I didn’t know that was a thing, and I’m really excited to find out that it is.
Nora: Well, it was kind of this crisis point back in last November where I was like, “The healthcare system is like impossible for me to manage.” Particularly as the person who is chronically ill, and it’s the labor of managing a complex patient so often lands on the complex patient because nobody is really taking the initiative to manage and drive things. And pretty soon after I was having and that problem, my dad found this website, patientnavigator.com. And they have people who will kind of be your advocate. They do some stuff with coordinating care for elderly patients, and then they do some stuff for helping patients navigate the healthcare system or helping patients who have received a diagnosis they’re not sure is quite right, and they want someone to like put in some hours for them to research other possibilities or, other physicians who might be better suited to their thing. I mean, I’ve been saying this… I mean, it sounds like a dream, right?
Brianne: Yeah. It’s like everybody needs this, but it’s imperfect, I’m sure.
Nora: I mean, obviously it’s really expensive.
Brianne: Yeah. I believe it. Well, it’s time consuming. I mean, like you say, this usually falls on the patient, and so many people talk about how just managing care is like a full-time job, because you want to make sure that you’re doing everything in your power to have the best quality of life possible. And it’s really time consuming, especially if your energy is compromised or your cognitive function is compromised. That’s so much stuff. And I understand that it would definitely be expensive to outsource, unfortunately.
Nora: Yeah. I just hit this point where I was like, “My clinical history is all over the map. It’s like a zillion stacks of records that are impossible to maintain.” I walk into a new practitioner’s office, and they have all these like random scattered notes from other people. They’re like, “I don’t even know what to do with this or what to make of this.”
Brianne: Yeah. What’s important, even.
Nora: And so the point that I was getting to would be that the history taking process with my navigator. I want to say it took up maybe 8 to 10 phone calls, each of which were about 80 minutes long.
Brianne: Yeah. Yeah. And to put that in perspective against typical medical care is… a specialist intake appointment may be half an hour.
Nora: Yeah. Sometimes even 15 or 20 minutes and it’s like, “Okay, you’re good. Go home, get some rest.”
Brianne: Yeah. You’re like, “Thank you. Good, good.” Yeah, no, I understand that it can’t be super thorough. And also these records have… usually I think for most people have so many dead ends that become not so much a part of your story, but are really important for your medical care to be like, “We’ve investigated this, we’ve investigated this.” What have we ruled out, and what do we still not know?
Nora: Right. It blows your mind. And I think the reason I turned in this direction rather than telling the story is I’m starting to realize… I know there’s no way we’re going to get to all of this.
Brianne: Yeah. So we can get kind of faster basically, if that makes the most sense. So we know that you were diagnosed with Crohn’s and that… sorry, not Crohn’s, celiac, and then IBD. And then you tried Remicade, which worked for a couple years, but was messing with your ANA levels. So at some point you switch over to Humira. What else? And I, okay… I hear you. So if we’re going to do some more glazing, what I would love to know is how did it impact… did it impact your daily life, right? Cause we’re talking about like building a… of course it did, but we’re talking about building a life, and maybe going to college or thinking about a career… we can kind of… without getting so bogged down that it would take whatever eight times 80 is… 640 minutes… from where you are right now, I’d love to hear more about that process. Does that make sense?
Nora: From where I am right now?
Brianne: Just, when we think back to like,” Oh, I know so much more now than I knew when I was 19 or 21 or whatever.” So it’s okay if it’s not always told in the present tense as if you don’t know what the future holds.
Nora: Yeah. The weird thing is I feel like I know a lot less than I thought I knew then.
Brianne: Yeah. That’s fair. Yeah. You’ve learned more about what you don’t know, maybe.
Nora: Yeah. Or even about what I think I can control, and it’s weird how once I’m doing better for a period of time… cause you do better and you do worse. And once I’m doing better, I’m so optimistic that I can get on top of things. I’m like, “I’m gonna do these three things, and then here’s my plan for life.” And then again, it just can get completely disrupted for no obvious reason or clear thing you did.
Brianne: Yes. Yes. The smallest version of that in my life… I really relate to it on a whole life level. But even my email inbox gets really backed up because sometimes responding to emails is just not going to happen because I have problems with my arms and my hands and because of cognitive fatigue. And then whenever that clears up for a while, every email I send is like, “Oh, sorry for the delay, but I’m all good now. So I expect to be totally responsive and normal.” And that is such a lie that I am telling by accident because of my deep denial that, of course this will flare up again.
Nora: Yeah, no, I think one time, maybe last October, I had some family members over briefly, and I was talking to them about like, “Yeah, things were just really bad this year, but they really seem like they’re going to be okay.” And that time that I talked to them was probably the last time I would be okay for the next several months. But I didn’t know. I was just like, “Oh, it seems like things are going in the right direction now. Why would I assume they’re not?”
Brianne: Yeah, well, like, “This trend line, I will assume it’s going to continue. Despite past evidence to the contrary.”
Brianne: Yeah. So yeah. So a different version of this question is what have you been up to in your day-to-day life? What was school like? Have you done some work? Have you… what do you get up to?
Nora: Oh, that’s a good, okay. When I was in college… I mean, yeah. I ask myself now, “Why did I develop a serious chronic disease, and then think like, ‘I’m going to go to this like top school’?” Yeah,
Brianne: and infamously serious and vigorous as a school.
Nora: Yeah. Yeah, where fun goes to die. That’s the University of Chicago.
Brianne: I know. I thought it, but didn’t say it, when you were talking about it.
Nora: It’s wild just where my… I’m a little better at setting my expectations now for what you would expect to be able to do. I had no ability to do that then, and it got to be a problem because I didn’t know really how to assess my readiness to take a particular course. And I have to assume that part of that is because before I got sick… just kind of the sky was the limit.
Brianne: Yeah, of course.
Nora: And you know, if I took something that was challenging or too much for me, it didn’t have terrible consequences for my health or even just my grades necessarily. Cause I would adapt, and I would be strengthened by the adversity of that situation. And that was not what was happening to me in college. I was not adapting much of the time. I would often drop classes or have to take a leave or take a retrospective leave or whatever.
Brianne: Yeah. Yeah. You end up in a position where you have no choice but to take a break that you were really hoping was not going to be a thing… like, with blinders on hoping it wouldn’t happen.
Brianne: Yeah. So did you finish college?
Nora: I did.
Brianne: And did you finish college on a normal… on am expected and typical timeframe?
Nora: No! Of course not.
Brianne: Yeah. How did the leaves affect that?
Nora: The leaves made it take longer for me to graduate.
Nora: No, and it wasn’t insanely long. I think it took me maybe five and a quarter years or something.
Brianne: Yeah. Yeah. Which all kinds of people take five years or six years or even seven years for all kinds of reasons, but it’s still hard. Okay. Any other reflections about college? So we don’t get stuck in the 860 minute version or sorry, 640… brain fog. Yeah. Any other reflections about college or what that time was like?
Nora: Ooh, that’s something I probably need to reflect on more. Cause, you know, it’s also just a blur. All the work and trying to deal with my health and being on medications that sort of altered me mentally. And some of which I probably shouldn’t have been on. But then couldn’t taper off of because that would put me further behind in school. It was… the need to finish and not drop out, and particularly the barriers I felt that the university enacted to taking as much time as you needed were pretty detrimental, I think to my… at least to my pursuit of health.
Brianne: Yeah. And was there anybody that you could go to that served some kind of advocate position? So the way that disability advocates are becoming more common on college campuses now. Do you feel like you had support from anybody or do you feel like you were really kind of on your own navigating this within that system?
Nora: Our student disability services were underfunded, but at least the person who was there and… by my second year of college and, worked there most of my time at the university was pretty good and helpful. I think she was just overwhelmed. Just cause again, they really needed more staff than they had.
Brianne: Yeah. Yeah. And that’s a big school as well.
Brianne: Okay. And so did you also… it sounds like you started Humira while you were in college, is that right? So you switched meds somewhere in this process? Yeah. And you’re still on that. Were there any other major health changes at that time?
Nora: In college? I had all kinds of weird health changes. In 2013 while I was still on Remicade and not yet on Humira. I had C. diff.
Brianne: Ughhhhhh. That’s my reaction to that.
Nora: …like three times, and by some stroke of luck, the gastroenterologist I saw there was kind of pioneering in fecal transplants for C. diff, which was kind of emerging as one of the few treatments that would really prevent it from coming back.
Nora: Cause the problem with it also… I don’t know if people listening, know what this is.
Brianne: Yeah. Yeah. Feel free to give more information cause I think my summary would be inaccurate.
Nora: C. diff or C. difficile or Clostridium difficile, if you want to get really long-winded, it’s a bacterial infection that I guess is usually transmitted by the fecal-oral route and can also be acquired by use of antibiotics, just cause it alters the gut bacteria.
Brianne: And it’s antibiotic-resistant, right? That’s one of the big problems
Nora: Yeah. So it’s called difficile for a reason. It’s really difficult to treat, and I think that is literally why they named it that.
Brianne: Yeah, I think so, too. Yeah. And this is the wrong word, but popularized by Tig Notaro, who is a comedian who had it, who talked about it a lot, and it shows up in her show. Yeah,
Nora: I know her. I didn’t know. She had C. diff. That’s crazy.
Brianne: She did. Yeah, because she also talked a lot about cancer, but she had C diff. And I think her show is called “One Mississippi” on…. I forget if it’s on Hulu or Amazon, but anyway, her character of herself on that show also has C. diff, and so they talk about fecal transplants and stuff. Just as a not so scientific reference for anybody who’s lightly curious, I guess. But anyway, yeah, so it can take over your guts a couple of different ways and it’s very difficult to treat. So they look at fecal transplants.
Nora: Yeah, I had it bad enough that the first time I was hospitalized, and I was sent home with a vancomycin, an antibiotic, and the infection got better, came back a month or two later, and I was hospitalized again. And again, discharged with these antibiotics. And I saw my gastroenterologist, not long after being discharged, and I told him that I wanted to see if I could obtain a fecal transplant. And at that time I think the FDA was allowing it, if you’d had either two recurrences requiring hospitalization, both of which you failed treatment for, or three that didn’t necessarily cause hospitalization. And so I told him, “Well, I’ve been hospitalized twice for this, and I know the statistics that suggest that it will likely come back if it’s already come back once. So I want to get a fecal transplant.” And he said to me, “Well, you don’t qualify yet. This course of antibiotics that you’re on now would have to fail.”
Brianne: Which would be so frustrating. You’re like, “Okay, cool. So is that our game plan? Let this fail?”
Nora: Well, here’s, what’s weird about this. If you can imagine, I… from what I knew about the efficacy of fecal transplants. I actually wanted that course of antibiotics to fail.
Brianne: In order to have that option available.
Brianne: And for the record, a fecal transplant is exactly what it sounds like. It’s yeah. It’s getting somebody else’s fecal matter transplanted into your body, basically with the intention that their healthy bacteria will create a healthier environment, right?
Nora: Yeah. Something like that.
Nora: I mean, I don’t know if we know why it helps C. diff so much specifically. I think there’s some people who have studied it in IBD, and it does seem to help in some instances, but it’s not as consistent or dramatic a result as infections like C. diff.
Brianne: So, okay. So the third round of antibiotics, how did that go?
Nora: Oh, no, this was only the second round of antibiotics. What we ended up doing based on my idea was I realized that because I had comorbid IBD, my gastroenterologist had prescribed a longer course of the antibiotics. And so I actually said to him, “Well, If we do the antibiotics for the normal two weeks or whatever it is for someone without IBD, then the disease comes back, that still counts as a failure. You can write that down as a failure.”
Nora: And I really wanted this treatment because I had a training thing in community organizing that I wanted to go to in a few weeks. And I wanted to be pretty secure that I would be well for it. And so he’s like, “Let’s do it.” And this is the story of how we intentionally undertreated a dangerous infection, just so that I could obtain a better treatment for said infection because medicine is just wild sometimes.
Brianne: Yeah. Totally. The authorization process can be very intriguing. Yeah. True. All right. So you’re intentionally… and then what happened?
Nora: Well, I had to get retested for C. diff, and I was a little nervous about it because when I had the test, I didn’t even have diarrhea. And I don’t think… in general, if someone is suspected of having C. diff, you’re not really supposed to test unless they have liquid diarrhea, but my test came back positive.
Brianne: Which is good news/bad news, right?
Nora: Yeah, it was… to me it was totally good news. It’s so messed up, but I feel like you’ve heard that a lot at this point.
Brianne: Yeah, of course. Of course you would prefer not to have C diff, but if you’re going to have the symptoms and a treatment is available, then the diagnosis is a good thing.
Nora: Yeah. Yeah. Cause I was not feeling great.
Nora: Even though I wasn’t having diarrhea, but I didn’t feel that great. And so found a donor, got the donor tested for stuff cause they’re supposed to not have any infections that they might not know about obviously, or parasites. And, one interesting thing is that if someone has celiac, if the patient has celiac, like I did, you’re supposed to find a donor who doesn’t eat gluten.
Brianne: Oh, okay. Yeah. That is interesting.
Nora: Yeah. Obviously a little tougher than it would have been, but I did find someone. And I did do the treatment, and I felt better almost immediately.
Brianne: Wow. And did you notice… just because you mentioned that also fecal transplants are kind of… they look at it for other digestive conditions, did you notice an improvement across your symptoms or were you even able to really distinguish like, “This one is definitely C-Diff and this one is definitely IBD.” Or did it kind of feel like stuff just merged together and sometimes got worse?
Nora: My IBD stayed pretty well, mostly in remission over the time I was on biologics. I was someone who had a very strong response to them. To the point where, I went from being one of the worst cases of IBD that my first GI had seen to being one of her best outcomes who is just like… yeah. I had later colonoscopies that were completely… that were really looking good. Yeah.
Brianne: Yeah. Okay. So then it was pretty obvious in that context that this was a C. diff problem and pretty obvious that the treatment had helped with the C. diff basically. Yeah.
Nora: Yeah. Yeah. It never… I’ve never once had C diff since then.
Brianne: Well, that is a… yeah… small piece of good news.
Nora: Yeah. It’s beautiful.
Brianne: Okay. So then if it makes sense, tell me about what’s been going on since college. Both what do you get up to? Same question, cause I know that work and purpose and all of these things get kind of… I don’t know what hand gesture I just made, but… get kind of confusing and intertwined and run into the same issues. And then health, as much as there have been changes or new information or whatever.
Nora: So I finished college at the end of 2017. And I think I was feeling pretty optimistic about things. My biggest problem at that time was that I was having these horrible headache episodes. I call them episodes because I wouldn’t just get a headache. I would usually have other symptoms that clustered with it and went away with it. My heart rate would go up. I would have just fog… be really brain foggy and stuff. And, sometimes something with my throat, either reflux or postnasal drip, I didn’t really know what it was. And a lot of my time in that last quarter of college was just consumed with a symptoms app. Trying to track what I was eating and what I was exposed to in my environment, because I felt like the headaches had a trigger or something just cause it would be these multi-system symptoms that would appear and disappear at roughly the same amount of time. But they weren’t really covered by any of my diagnoses. No one had said, “You will have these weird headaches things that kind of incapacitate you for a day.” And I don’t think they were migraines. Cause I had had some migraines before, and it was a very different quality… more, much sharper pain.
Brianne: And did you learn anything from symptom tracking? Since that is like such a difficult thing to even get into, I feel like.
Nora: Yeah. I don’t think I learned very much from it.
Brianne: Yeah, I get it.
Nora: And it is so much work. And, I feel like, I mean, it’s science basically, and science is a lot of work to yield sometimes no results or clear insights.
Brianne: Yeah. Yeah. Yep. That’s all I have to say about symptom tracking,
Nora: But you know, I still point to it as this period of optimism. Like, you know, “If I just dig, I can figure this out.”
Brianne: Yeah. Yeah. If I work harder at it, whatever that means… look harder for patterns or do better research or try harder to fix my bad habits, whatever they may be.
Nora: Right. And I mean, I wish I had some story of like, “No, but then we figured out what they really were and now they’re…” but I mean, they are gone, but I have no idea why they went away.
Brianne: Yeah. And I think that is super common. And I think media or the culture has created this expectation that you can’t tell your story until you figure it out. So until you have that version of it, of like, “And then it turned out that it was all because…” I don’t know, “I was wearing earrings that I was allergic to and my whole body was reacting. So when I stopped, it was fixed.” And I think the truth is that most people are still trying to find that explanation so that they can start telling their story. And it creates this false bias that that even exists. Because I think that the truth is that there isn’t a convenient explanation or a single explanation for most people’s chronic and complicated health conditions.
Nora: Yeah. I mean, even… I listened to your first, episode, where you talk about your experience, and I mean, already, since then so much has evolved and gotten maybe less clear in some ways.
Brianne: Yeah, and I’ll say in my case specifically, I just went back to… I just started pushing on doctors again, so I went back to my PCP, and I went back to specialists. I just had a neurologist appointment. I had a cardiologist appointment last week. I am getting new tests done and getting new information. So I just got MRI results that I have not yet been able to review with a doctor, but I definitely have spinal stenosis and bone spurs in the vertebrae in my neck. And that can pinch your nerves. That can put pressure on your nerves, which can cause some of the neurological problems that I’ve been having and maybe other problems. But also I still… the part of my story that’s in my episode about the mold, I still had distinct symptoms while we were in that house that have never come back. So some of that stuff was definitely environmental, and some of that stuff, maybe wasn’t and pulling that apart and telling that story is hard. Fact.
Nora: Yeah. Sometimes you just don’t know. I mean, I’ve known people who have had symptoms that seem to clearly be from mold and they worked out they were from mold, but at some point they just stopped reacting to mold.
Brianne: Yeah. Yeah. And it’s like, what else is triggering your immune system to be so sensitive? This general theory about environmental illness and allergies and stuff, sometimes there’s… it’s like a bucket, right? And you can… your body can take so many kind of insults and then one thing will set you off. Or people with mast cell activation problems. Yeah, you just have allergic reactions to random shit. I had some… I mean, not at all serious, but kind of intense reactions to hotel coffee in February two days in a row, exact same reaction. I drink coffee every day. I’m not allergic to coffee. I have not reacted to any other coffee since, but whatever the conditions that day meant that my immune system was not having that coffee. Like what, why?
Nora: Well, you know, it’s understandable why some people… I’m not saying I condone it, but it’s clear why some people think that we’re overreacting a bit.
Brianne: Yeah. It’s… from the outside, it looks really erratic and chaotic, and I understand that. And I’ve been thinking about it with my own story as I’m like, “Oh, I might… I don’t know yet. I might have more information and a new diagnosis and a different explanation.” And it becomes a credibility problem too. This doesn’t mean that everything that I said and thought about my health before was untrue, but it speaks to how difficult the diagnostic experience is because you tell stories and try to find meaning in something that might change. And people who haven’t been through that, it seems absurd because it’s so different than I think how it’s represented in media. The way that movies tell us that people find out about health conditions make it seem really binary, and that’s just not the case. I have a lot of rants about this.
Nora: Yeah, absolutely.
Brianne: Okay. So, back to you. So tell me, I guess… what what’s up now, basically? What is the present like? Since you’re about two years out of college, it sounds like.
Nora: Yeah, like a year and a half, maybe a few months after college, I moved back home to my parents’ house in Portland, and I got offered a part-time job by some coincidence around when I graduated. It was like my former boss had been asked by this research team, for recommendations cause I had done some research assistant work that was remote in the past. And I kind of interviewed for this job thinking, “Yeah, this is up my alley and something I want to do, but I really feel like I need a break.”
Brianne: Yeah, yeah. Just to rest for a while.
Nora: And I was really… I really went through a big process of, what are my values here? I value my health. I haven’t gotten the opportunity to value my health as much as I could because I’ve been needing to push myself to graduate and not get kicked out of school by being on probation too long. And so I was really clear and firm. They actually offered me a full-time position, which would have been great and I was like, “I can only work 15 hours for you.”
Brianne: Yeah. Which good for you for saying, because it’s hard. It’s hard to like, 1.) Admit that for yourself, I think or I definitely have a problem with that and I know other people do. And then 2.) Go out and advocate for that. Those are both really difficult things to do.
Nora: Yeah, it was… I mean, gosh, work for any kind of research university. Those are some of the best jobs you can have, I think. I had so much flexibility. It was remote, so I was doing it from a different state. And yet, I think I had mentioned before that in college, I just ended up on a bunch of medications that I couldn’t really taper off of because I didn’t have the time to devote, to really dealing with the withdrawal effects.
Nora: And one in particular I really needed to get off of. I was on a type of steroid that had apparently suppressed my adrenal glands, and I had developed adrenal insufficiency. And it’s a kind that’s reversible in theory, if you just very gradually wean off of the steroid, but my problem was I had to get this work together for this team, and I would up my steroid dose in order to get through some of the work, which I could not keep up. I had to get off of them. That was what my focus needed to be. And so eventually I just had to leave a job and become a full time patient.
Brianne: Yeah. Yeah, totally. Yeah. And how did that feel? Because in my experience choosing to do that can really… it can be a really emotional process. You’re like, “Yes. Nodding.”
Nora: Yeah. It was really, really… it was tough and I want to say in a good way, ultimately, really being forced to actually listen to what my body had been telling me to do for probably quite a long time.
Brianne: Yeah. Yeah. And I’m going to project again, in my experience. When you make space to do that, to pay more attention to your body, you realize sometimes how much you’ve been making it, just deal with another small micro example, so I’m lying down right now while we’re having this conversation because I strained my neck last weekend. And I’ve been resting my neck for a week, and it’s still not normal, but now that I’ve just had this experience because I rest so much now, I’m realizing that in my twenties, when I was working full time and volunteering and just very busy, I was a very busy person. I felt like I had that level of pain all the time and I didn’t… I just was living with it. And I’m like, “Of course that was not sustainable, and you crashed extremely hard when your body couldn’t tolerate that anymore. How did you not realize that that was an insustainable and definitely not normal amount of pain?” But I had no idea, or I didn’t want to think about it, or I just… you know, and it’s… When you make space for that, you’re like, “Oh, I’m sorry, body. I have been abusing you. Geez.”
Nora: Yeah. Yeah, no, it’s heavy, and you also don’t want to get completely narcissistically obsessed with your body either, which can also happen. I think probably Meghan O’Rourke’s piece on this from the New Yorker…
Brianne: I love that essay so much. I think it’s called “What’s Wrong with Me.” I’ll put a link to it in the show notes. It’s so good. Sorry, go on. Yeah, you become obsessed.
Nora: Yeah. Just, “I’m going to pursue every treatment under the sun and be monitoring every aspect of my life.” And at a certain point, the gains, you might obtain from that don’t really outweigh the effort you’re putting in, and the impact on your personal relationships… you really don’t want to be thinking about your body all the time. I think you need to think about it more than you were when you were just trucking along full time not thinking about it at all, but there’s a process of finding a balance. And, I can’t emphasize enough… there’s like, I think a lot of people who you’ve interviewed probably can’t… I’ve been so lucky to even have an environment where I can focus on my health to the extent that I can. My family is very supportive of me in that endeavor.
Brianne: Yeah. Being able to take a step back is a privilege. No matter how much it feels like, “I can’t work anymore.” There are people who still do.
Nora: Yeah, most people have to.
Brianne: Yeah. Yeah. Definitely hugely important to recognize because that’s a really big cultural problem and failing of our social safety net, et cetera. Yes. Gosh, you just made me think of something else too, and now I lost it. So go on and I might interrupt you in 30 seconds when it comes back.
Nora: Ooh. Go on.
Brianne: Oh, I know what I was going to ask you. I was going to say, so I don’t know how old you are, but I’m imagining based on when all this started that you were on your parents’ health insurance. So are you still able to do that, or have you had to find your own health insurance solutions yet?
Nora: I am still on their health insurance. And I can’t really go into that, but most likely will be for another year or more.
Brianne: So it is not currently one of the many frustrating things about managing chronic illness for you, which is excellent.
Nora: Right. Well, I mean, yeah, dealing with the insurance can be frustrating, but having it is very good.
Brianne: Yeah. Yeah. And so what, this is going to be kind of my last question. And then if there’s anything else that you want to throw in there, go for it. But, so what is your day-to-day like right now? It sounds like you’re still doing medical investigation and trying to figure out the best ways to kind of care for your body and improve your baseline and all this stuff that makes sense. But yeah, just what’s right now, like for you?
Nora: Right now, I’ve actually gotten to be very, in a routine, which is not exactly how I… it’s hard for me to have any structure in my life if no one’s imposing it. Like if I don’t have a boss or school or whatever, but I pretty much… partly because I have to take medications so many times in the day, and that structures my day itself. I get up at 7:00 AM every single day. I go to bed at… probably around 10:45 or 11:00 PM every single day. I go to the JCC and shower like three times a week. I work on… right now I’ve been working on a couple of writing projects. One is my blog, which you’ll probably put a link to. It’s… so the first four letters of my last name, H-E-L-F as in Frank. and then care. So like health care, but with an F.
Brianne: [Laughs] That’s great. I love it. So, okay. And so you blog about all this stuff… this kind of stuff.
Nora: Yeah, I would say it’s more personal essays and less towards the, “let’s educate the public,” kind of thing.
Brianne: That’s also my preference from an impact in reading point of view.
Nora: So that’s one thing I do. The other thing right now that I’ve been working on… so my aunt in Minnesota is a playwright. Her name is Kit Bix, K-I-T B-I-X, and she and I… she was commissioned to write a play for the Minnesota Fringe Festival this coming August, and she’s written plays for them the past couple of years. And this year, I kind of caught this playwriting bug, all of a sudden, and I asked her… I just asked her if she could give me advice on how to write plays. And she’s like, “Oh, I’m writing one right now. Do you want to help me write it?” So, I’ve been contributing, a little bit to that.
Brianne: Yeah, that must be an awesome opportunity to really learn about something and work on something and all this stuff.
Nora: Yeah. No, it’s really nice. I mean, I’m finding I learn a lot more when it’s not for a grade.
Brianne: Yeah. Yeah. Fair enough. When it’s not… it’s such a different kind of pressure when you’re doing something performative for school or whatever. Yeah.
Nora: Yeah. Yeah, no. So the play is going to be called.. As far as I know, the title is “The HUAC Road Show” that’s H-U-A-C… stands for the House Un-American Activities Committee, and so it’s going to be kind of a documentary play about the House Un-American Activities Committee over it’s… I think like 30 years of operation, which a lot of people don’t know. It was an active part of the House before McCarthyism was a thing. So we kind of tell some of the earlier history of it and show how it kind of built into the force that it was.
Brianne: Yeah. Yeah. That sounds excellent. And, yeah, totally an interesting thing. And you get to research, and you get to be creative, and you get to put a lot of different parts of yourself into one project.
Nora: Yeah, no, it’s weird. As much as being ill a lot or just having these limitations sucks. Sometimes you just feel like you’ve tapped into this big secret of life that everyone else is missing out on.
Brianne: Yeah. Yeah. Your perspective changes so much when you’re like, “Oh, the way that some of my, you know, healthy peers or whatever are just living. Everything about what dictates dictates their choices is so different from mine, but there are some parts of my experience that I’m so grateful for, even if there are some parts that I could do without.”
Nora: Yeah. And it’s just like, being forced to kind of slow down and probably cut out a lot of the negative influences in your life, just because you physically cannot tolerate them anymore.
Brianne: Yeah. Yeah. I barely drink at this time in my life because every time I do, the consequences are so severe. Like the full day hangover I had after having one can of cider a month ago when I was like, “It’s a beautiful day. I’m going to be normal.” No, that’s not what happened.
Nora: Right. And it sounds… I mean, it sounds and kind of is awful. Everyone’s like, “Who would want to live like this?” But you do kind of have to learn to deal with your stress in ways other than drinking.
Brianne: Yeah, absolutely. Is there anything else about chronic illness or your own experience, or healthcare that we haven’t gotten to that feels top of mind for you?
Nora: I guess there’s one analogy I’ve been thinking about. Something I’ve learned lately. So I’ve taken a little bit of computer science and whatever I explain here may be a little bit off.
Brianne: That’s okay.
Nora: We learned about this thing called an interrupt basically, and a lot of things that you do to your computer can trigger an interrupt. It basically means we stop whatever process is happening and start this new one. And a good example of that is if you want to move the mouse, then that’s a process that’s very… that has to happen in a certain amount of time. I mean, your computer loading an internet page. It’s not great if it takes a minute, but it can take a minute. You don’t want to move the mouse and then have the mouse move like a minute after you moved it.
Brianne: Yeah. That’s just frustrating. And like confusing.
Nora: So there has to be an interrupt that says, “Wait.” And obviously this will happen so quickly that you don’t experience it as like the other process completely stops, especially modern computers just have a lot of ways to run multiple processes at once and use threading and all this kind of stuff you can’t get into. But I have learned that physiological needs are an interrupt. And on my very, slow MS-DOS kind of deal of my body. That means if I am doing something, and I have any kind of need, my body will not really let me do that thing until I’ve addressed the need, and it’ll get worse and worse until I do. And I literally will have experiences where I’m writing something or reading, and I’m kind of getting stuck and not quite getting what’s going on, and so sometimes I just take a step back and I’m like, “What is my body saying?” And sometimes I realize like, “Oh, I actually really have to pee.” Or like, “I’m actually really hungry,” and I go address the need and all of a sudden I can work again, and I would have had no idea if I didn’t learn just how difficult it is to attune to my signals.
Brianne: Yes. Yeah, I love that analogy, and I totally totally relate to that. As a healthy person or growing up without a diagnosis or whatever’s going on, you learn to ignore this stuff basically. Obviously you still go to the bathroom and you still eat or whatever. It’s not that your body is a machine, but you don’t learn to be super attuned to the small stuff that necessarily wants to be taken care of. And I think that’s another part of the like taking space, you know, when you stop working and you take space to actually listen to your body and you’re like, “Oh, there’s a lot more going on here, and a lot more subtle messages being sent than I had originally realized.”
Nora: Yeah, you get so out of touch with it. And I think we also received the message that it’s indulgent to even listen.
Brianne: Yeah. I think you’re right. I think you’re right. It’s a only a thing for fancy wellness people who are… I don’t even know what… healthy people who go on the paleo diet, and take a lot of baths and it gets branded as indulgent self self-care. And you’re like, “That’s probably not a real stereotype to begin with, but also a lot of this self-care stuff is actually totally necessary to function.”
Nora: Yeah, I know. Yeah. It’s definitely not very glamorous, and people don’t really see the work that goes into, even being able to show up for an interview like this I have to…
Nora: …really be taking care of myself.
Brianne: Yeah. Yeah. And an hour and a half is a lot of time to be still and cognitively present and a lot goes in to these conversations, I think. Totally, totally. But thank you so much for, for talking to me and putting all of it into… putting everything that you needed in order to be present for… yeah, about an hour and a half.
Nora: Wow. We did it.
Brianne: We did it.
Thank you for listening to episode 43 of No End In Sight!
You can find Nora on twitter @nhelfand and you can find me on instagram and twitter @bennessb. And of course you can find this show on instagram @no.end.in.sight.pod. I post each episode as a story but haven’t posted to the main feed in a while because I’m so behind on transcripts – as you know. But of course, the whole reason that I’ve started a patreon account is to help with those transcripts, so I’ll go ahead and plug that again: it’s patreon.com/noendinsight.
Next week I’ll be talking to a woman with neuromyelitis optica, so make sure you subscribe in your podcast app to find out when new episodes are available. And if you’ve been enjoying this show, I would be so grateful if you’d leave a review on Apple Podcasts so that new listeners know what to expect from the show.
As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.
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