Krystal Vasquez talks hypermobility, mast cells, and CSF leaks.
TranscriptBrianne: I’m Brianne Benness, and this is No End In Sight, a podcast about life with chronic illness.
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Drew: Hey, this is associate producer Drew Maar. Before we get started, here’s a quick reminder that you can find No End In Sight on Patreon, which is a really simple way for listeners to subscribe to support the show financially on a monthly basis. So if you’ve been enjoying the podcast and you also have a couple bucks to spare, we’d be so so grateful if you’d sign up as a patron at patreon.com/noendinsight. Today we’ll be talking with Krystal Vasquez about hypermobility, mast cells, and CSF leaks. A couple of content notes for this episode: There’s a mention of food tracking around 32 minutes in, and COVID is mentioned a couple of times throughout the episode with a discussion surrounding infection risk at the 45 minute mark. Before we start, here’s our 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.
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Brianne: So I like to start just by asking people, how was your health as a kid?
Krystal: So I always thought that I was like, a super healthy child. And all doctors were always like, “Oh, she’s so healthy.” And like, “It’s fine.” It wasn’t necessarily fine. It wasn’t necessarily like, anything that bothered me on a day-to-day basis, but like, having like, lots of headaches as a teenager, my knees always hurt with weather changes, and my mom usually pushed it off as like, “Oh, that happens to everyone.” And I’m like, “Does it though?”
Brianne: Yeah. “Really?” But like, perhaps it happened to your mom.
Krystal: Right. Like, it was probably normal for her, but it wasn’t normal for like, the general public. I also had a lot of like, weird presyncope spells, which they usually say like, you get as a teenage girl for some reason. But it didn’t really go away. It’s gotten to the point where I… so I never actually faint, but I can… when my vision blacks out, I can still like, migrate to my next destination pretty well. And I feel like that’s a skill.
Brianne: Yeah. There’s like a level of stasis that you can find where you’re like, “Okay, well, my eyes aren’t working anymore, but my legs are still… like, my arms and legs are still responding. So if I can just get myself to a safe location, I don’t need to see for the next…” But it’s like, you’re right. It is a little bit of a gamble.
Krystal: Yeah, but like, I thought that was normal. Like, people just do that and I’m like, “Oh, it’s not.” Also like, sitting in the shower isn’t a normal thing. I’ve sat in the shower, like the floor of the shower since I was little. Like, showers are exhausting if I don’t sit.
Brianne: Right. Yeah. And they are. But like, as a kid, especially stuff like bathing, I think, where like, you probably only know your immediate family’s habits and like, maybe somehow a couple other close friends or something. We’re not all talking about our shower postures every day, like at public school or something. You just wouldn’t even know.
Krystal: Yeah I’m just like, “Why wouldn’t people sit in the shower? It’s so much more comfortable and easy.”
Brianne: “Don’t they get dizzy?”
Krystal: “Don’t they get tired? Like, isn’t the water like, too hot for them?” Yeah. Those things.
Brianne: Yeah. Yeah. So you had like, what we would maybe say like, idiosyncrasies that at the time you didn’t know were perhaps unusual or meaningful, sounds like.
Krystal: Right. And I also sit really weird. So you can’t see it now, but I’m like in a ball.
Brianne: Yeah, me too. I’m like, this is my knee right here at the bottom of the camera.
Krystal: Yeah. So I’ve always sat really oddly, I guess. Which, I don’t know, people just thought, “Oh, Krystal’s just weird. It’s fine.” But I’m learning that that’s probably to help my hips feel comfortable and to help my body stay upright.
Brianne: Yeah. Yeah. I’ve been learning so much about that, the last few weeks even. And it’s like, “Oh, people who may or may not be a hypermobile, like, our postures are really going to be correcting differently.” And like, some of these habits might anecdotally turn out to be really big patterns and people with this body stuff. Tell me if you relate to this or not, but I feel like being a fidgety sitter when you’re younger, people just think that you’re annoying. They’re like, “Why can’t you just sit still? And it’s never like, “Oh, I want to annoy everybody by moving my feet a lot to keep circulation.”
Krystal: I’m just uncomfortable. Like, I wrap my legs around chair legs. I’ve crossed my legs like, two times sitting cross legged or whatever. Yeah.
Brianne: I noticed yesterday that I was like, jiggling my calf a lot, just like, tensing and un-tensing. And I think my husband asked me about it, and I was like, “Oh, I do that all the time. I just never…” If someone had asked me and I wasn’t doing it, I would’ve never thought that I did that, but he was like, “What are you doing right now? Is that on purpose?” It’s like, “Oh yeah, I think I do that all the time.” And now I’m like, “And I bet it’s for circulation.” I just didn’t ever realize that it made me feel better.
Krystal: Right. My hips are probably one of the most hypermobile parts of my body for whatever reason, and I’ve definitely noticed that that’s the area that hurts if I’m sitting like, properly. So I’m just like, “Oh, bodies are weird.”
Brianne: Yeah, yeah. And chairs are weird.
Krystal: Chairs are weird.
Brianne: But so as a kid, these are all other kinds of signs that are starting to pile up. And was there a point when you were younger, when anything started to look suspicious or kind of changed or did that trend last through school, kind of?
Krystal: It lasted for a while. The first major thing that had ever happened to me was in college. I was training for a 5k and so running on the street and cement. And suddenly I got this really like, painful feeling in my pelvis. And so I went to the doctor, and they were just like, “Oh, your hip’s misaligned.”
Brianne: Oh!
Krystal: And I’m like, “How did that happen?” They’re like, “I don’t know. It’s misaligned. We’ll realign it.” And I’m like, “Is this a normal thing that happens?” In the same appointment I also asked about my knees cause they’re the ones who always hurt. And then they’re like, “Oh, that happens sometimes.” And I’m like, “To like a 20…” what was I? Like, 21 at the time?
Brianne: You’re like, “Okay. But do all of these things happened to the same 21 year old very often?”
Krystal: Right. And like, I never really ran again after that. Cause like, it would come back a little bit, not as bad as the first time. And I’m just like, “Well, I guess running isn’t for me.”
Brianne: “I just have a funny hip.”
Krystal: Yeah. It was really confusing.
Brianne: Yeah. Yeah. It’s so weird once you start to like, put pieces together, and you’re like, “Oh, that doctor just didn’t know.” Like, “The questions that I was asking were the right questions.”
Krystal: Looking back, I think my doctor actually was quite confused, but they just didn’t admit it.
Brianne: Right.
Krystal: But I also wasn’t like… I didn’t know how to press them like, properly, so I just let it go.
Brianne: Yeah. It also feels like, I think, “What are they going to do?” Like, you have an injury and the injury… like, they’re treating it or they’re not treating it, but they’re… the underlying thing… there’s nothing to know yet. Not that that’s really a defense. That’s terrible. Okay. So you had a running injury while you were in college. And you stopped running, but you were like, “Okay, well, that’s a weird thing, I guess.” And then, did you more or less go back to normal, but without running?
Krystal: Mostly. Like, I just always deal with headaches. That’s a thing that has always happened to me. But for the most part, my health went back to baseline until grad school, which is when all of the stress and whatever made my body into a disaster, and all of the EDS and all of its friends came and was like, “Hi, nice to meet you.”
Brianne: Yeah, there was like a perfect storm. It’s interesting knowing about EDS a little bit, how people are like, “It’s weird that chronic illnesses like, so often have a stressful onset. Is it the stress?” And it’s like, “Well kind of, but also like, the kindling was already there. Like, it didn’t come from nowhere.” Okay. So what were you aware of first?
Krystal: Like, symptom-wise or?
Brianne: Yeah, like when that was starting.
Krystal: There was a huge change to my mental health first. That was the first thing that came. And I went to see a therapist who, this plays a role later, but coincidentally, also has EDS. It was amazing. So I had this whole like depression/anxiety, and I was talking to her and at some point during grad school, I offhandedly mentioned to her like, “Oh, I was walking from my train stop to school, which is like a mile, and for some reason I felt compelled to sit down halfway. Like, I just didn’t have the energy to continue going. I must be really depressed or something.”
Brianne: Yes. That’s like, what I was like exactly. Like, “Why can’t my brain keep up with anything?”
Krystal: And she’s like, “Oh, that’s interesting. You should go see a medical doctor and make sure like, your hormones are fine. Your thyroid is fine. Like, you don’t have like, a auto-immune disease.” And so that kind of started my medical journey of going to doctors and them being like, “You’re probably depressed. You should see a psychiatrist.” And I’m like, “I don’t really want to.” Also, cause I had a lot of weird reactions to medications when I was going to a psychiatrist, which I guess is normal for people with EDS and such.
Brianne: Yeah. But at the time you were like, “I have bad luck with medication,” right? So, you had had some mysterious need to sit down while you were walking, and you mentioned it to your therapist who, incidentally, is chronically ill, and your therapist suggested that that was maybe not a problem for therapy, basically. Okay.
Krystal: Yeah.
Brianne: Yeah. And also you now realize, you’re like, “Also there’s mental health history, and mental health medications I’ve always had trouble with.” So then, did things start to kind of pile up slowly or did things go real quickly?
Krystal: It started slow. So it then started with like, aches and pains when I woke up. Like, my legs and arms were just super tired all the time, and like, there was this like, overwhelming fatigue. And that happened maybe through one summer, and then towards the fall, when I started revamping my schedule a little bit more, I started having nerve pain. So, nerve pain in my arms. And then I was like, “Oh, this is really not good.”
Brianne: Yeah. It’s like, so more… it’s electric. It’s like, a whole other thing than fatigue, where you’re like, “Well, am I tired?” I feel like you never wonder if you’re having nerve pain or not.
Krystal: Right. If I’m tired, I’m like, “Oh, I’m just stressed,” or, “Oh, I’m just depressed or I’m just anxious.” But nerve pain, I’m like, “Oh crap, is there something wrong with my brain, my nervous system?”
Brianne: Yeah. “This feels serious.”
Krystal: Yeah. What happened one time is at school I was working, and I just felt really out of breath, and I felt really tired. And I was like, “I’m kind of scared. I’m going to go to my health center at the university.” And then they were like, “I don’t know. Let’s send you to a rheumatologist. Why not?”
Brianne: Okay. Yeah.
Krystal: Yeah. They’re like, “There’s nothing wrong with you. Your temperature is fine. Like, you don’t seem sick, I guess.”
Brianne: “The two things that we know to check for.”
Krystal: Yeah. And then I think this was the same visit or maybe a followup visit was like, “I think you have fibromyalgia. We’re going to send you to a rheumatologist.” The doctor at my school sent me just this packet of like, “This is what fibromyalgia is,” and handed it to me. And I kind of was sitting there and I’m like, “You just kind of told me I had this chronic thing that can’t be cured.”
Brianne: Yeah. Perhaps a little bit more conversation is necessary.
Krystal: Right. And then they’re like, “There’s nothing else I can do to you.” And then the specialist was like, “Yeah, you probably have fibromyalgia.” So I have this really bad history with rheumatologists. Like, I cannot stand them right now. The first one was like, “Oh yeah, well, most of my fibromyalgia patients feel like they want to die,” which was confirming, but also kind of messed up to say, when you first meet someone.
Brianne: Yeah. Like there are so many ways to try and be like, “Just so you know, you’re not alone in experiencing this as difficult.” There are much gentler ways and different things to say that are not that because that is jarring.
Krystal: She was also not really fond of medicine for some reason. Like, taking medication. So I think I just had a couple of muscle relaxers, which I also react really badly to, for some reason.
Brianne: Right.
Krystal: My history continues. But eventually she left the practice, and I got switched to another one. But at this point I’m kind of like “Fibro doesn’t seem like the whole picture.” I also have this really weird relationship with fibromyalgia because just throughout my diagnosis history, it’s been one of those things where like, “It’s just fibro. Like, there’s nothing else wrong.” And I’m like, “There’s obviously something else wrong.” So even if fibro is something that I have, which I still don’t know, I’m kind of like, “I don’t want to touch it.”
Brianne: Yeah, that’s so valid. It’s such a complicated thing that like, fibro is a symptom cluster really. And there’s research into causes of that symptom cluster. Like, it is a real experience and a real diagnosis, but it’s not a diagnosis with a known underlying cause, or even really a single unifying theory. It’s like, probably a whole bunch of people with different underlying causes and the same symptom cluster, but a lot of doctors don’t treat it that way for some reason. They like, either just like, “Fibro’s fake, and that means that you’re not sick at all.” Or they’re like, “Everything you have is caused by fibro.” It’s like, “Well, nothing’s caused by fibro. It’s descriptive.” It’s not anything. Like. This whole linguistic mess. It’s become a lot clearer to me the more I’ve talked to people, and the more that I hear people especially with fibro, who turned out to have an underlying condition, which is like… again, doesn’t mean that fibro is not real. It means that fibro is secondary to the underlying condition and not everyone with the underlying condition have fibro as a result. Okay. That’s like, all of the disclaimers for everybody listening about diagnostic validity. It’s complicated and understandable.
Krystal: It gets even like, more messed up when all of your blood tests come back negative. Well, at least within the range, and I’ve learned recently that the range is kind of crap. Like, even if you’re within the range, but you’re like, on either end, it could still mess up your whole system.
Brianne: Yeah. Yeah.
Krystal: I went from rheumatologist to rheumatologist to try and figure out what was wrong, and they’re all like, “Fibro!” There was this one rheumatologist that I went to who was supposed to be really really good. And they were off of my insurance, so this was out of network. And it was probably the worst experience in my life.
Brianne: Oh, no!
Krystal: Cause I like, met with her, and I had mentioned the EDS cause at that point I was like, “Oh, I think that this might actually be a thing that I might have.” She was like, “Well, even if it is EDS, there’s no cure. You just have to go to PT or something, or like, they just have to like, learn how to like, position themselves properly.” Something really like, an offhanded remark about that.
Brianne: Yeah.
Krystal: She also… I followed up in an email, and she was like, “You’re not hypermobile.” And I’m like, “You didn’t like, test, you didn’t do the…” what’s it called? The Beighton score. She didn’t do any of that to me. And I was like, “You don’t actually know, and it’s on my chart from my other doctor.”
Brianne: Yeah. Like, “You’re just not even… this isn’t About me. It feels like you’re not looking at my info.”
Krystal: Also the fact that she said that EDS can’t even be cured, but like, she was still like, “It’s probably fibromyalgia.” And I was like, “That also can’t be cured.”
Brianne: Right? Yeah. Like, “What is your enthusiasm here?” And with EDS, I’ve probably said this like a million times in this round of podcast episodes that are going to come out, but it’s so frustrating because yes, it’s true that there’s no targeted treatment or medication. But like, one, it is absolutely true that learning about your body mechanics can make a big difference for a lot of people, and two, it informs all of your other care. Like, it should inform cardiology. It should inform, I mean, literally everything. So it’s so ridiculous for doctors to be like, “You don’t need to know if this applies to your body or not.”
Krystal: Right.
Brianne: So there’s a rant.
Krystal: Yeah. I think long story short, like, I ended up finding this primary care physician who… I think his daughter has EDS, so he’s really familiar. And he handles a lot of EDS patients in the area. And I finally got my diagnosis: hypermobile EDS, surprise!
Brianne: You said you had mentioned it to your previous doctor, so by then you were like, looking for care for EDS to be evaluated for it specifically, right? You weren’t like, “What could I have out of anything?” You were like, “Who can actually help me with this thing that seems to be at least part of what’s going on?”
Krystal: Yeah, I think a few people had mentioned it was a possibility to me, a few people who at least know of medical things. And I was like, “Well, I do kind of pass this like, weird arbitrary Beighton score thing, and I also have all these other symptoms that I guess kind of match.” And then I got that diagnosis, and then with it… I don’t have to have an official diagnosis for dysautonomia or POTS, but it is like, a thing that I know I have.
Brianne: Right. I mean, other kinds of dysautonomia are more complicated, but POTS like, when you check at home, you’re basically getting the same information as when the doctor checks. And that doesn’t mean that a doctor isn’t valuable for managing it, but it just means like, it’s not a lot in question. Your autonomic nervous system is dysregulated, you can tell.
Krystal: Yeah. I know early on, when I first learned about dysautonomia, I brought it up with an older primary care person, and they were like, “Oh, do you have like, a Fitbit or something? Like, do you check this?” And I’m like, “Why aren’t you… isn’t this your job?”
Brianne: Yeah. “Can you check it?”
Krystal: Like, “How do you know if I can afford a Fitbit?”
Brianne: I think about it that all the time too, which is that like, Fitbits and other… I know some people who are very deep into tracking tools like, Garmin has a fancy watch. There’s like, a bunch of them, and they’re so helpful for dysautonomia, but they’re… none of them are considered medical right now. And they absolutely should be. You should get a Fitbit as soon as someone thinks that you might have dysautonomia, and you should get to keep it. Like, they are a medically necessary tools, but they’re not priced or acquired that way right now. That’s like, everything that doctors think about, what might be helpful, “Have you tried this expensive intervention that I think you might like if you can afford it?”
Krystal: Yeah. It’s a mess. I’m really privileged. I can afford a Fitbit, and I can afford a lot of tests, and I have reasonably good insurance since I’m still a grad student.
Brianne: As soon as you’re in a community like, you know where the barriers are with other people too. It’s not like, “Oh, cool. I ended up being okay, so now it doesn’t matter that it’s a problem.” okay. So you were diagnosed with EDS, and you live with dysautonomia and POTS although you have not had a tilt table test, which is… plenty of people who are diagnosed that way also, like without one. So it’s kind of arbitrary.
Krystal: Yeah. Yeah. When I did go to a cardiologist, they were kind of like, questioning my EDS diagnosis and they’re like, “You should get genetic testing.” I was like, “If it’s hypermobile EDS, that doesn’t really matter, so…” But I don’t know… that ended up falling through. I also ended up figuring out that CSF leaks were really related to EDS.
Brianne: Yeah. So you were like, “I have EDS, and now I must learn all about it,” probably, as a grad student. And you recognize POTS right away, or like, kind of pretty soon. How did you start to uncover the other co-morbidities or complications? Were you like, paying more attention and you could feel it?
Krystal: Yeah. So, the CSF leak in particular was like, the weird one that I had no idea about. I took a medical leave for maybe five months, maybe like a year ago, and during the medical leave, I was basically horizontal the whole time. And I was just attributing it to like, “Oh, I’m in pain, and everything sucks. So I’m just going to lay down.” When I went back to work, which coincidentally happened at the same time the pandemic hit, so at least I was at home. But I noticed that I couldn’t sit at my desk for very long without getting like, this whole like shoulder pain and like, a headache and a migraine eventually. And I was like, “Oh, this is weird. What does EDS have that could cause this?”
Brianne: Which again, this is one of the reasons that it’s so important. It’s fine that there’s no magic drug. Being able to Google that is already so helpful, or wherever you do your searching.
Krystal: Right, Yeah. And so first was like, instability, any cervical spinal instability, but like, all my MRIs and imaging are always normal, like frustratingly normal.
Brianne: You’re like, “I would love to have a healthy neck, but if I have the symptoms of an unhealthy neck, it’s not very comforting.” Same as any other test.
Krystal: Right. I think also my therapist, coincidentally also had a CSF leak in her lifetime at some point. And so she was basically like, “Well, it could be like this, this, or a CSF leak.” And I was like, “Oh, what’s that? Let me Google it.”
Brianne: Yeah.
Krystal: I ended up finding a specialist, I think that was recommended to me. My imaging was still pretty normal, so they were like, “It’s probably nothing. But if you want to, you could wear this abdominal binder for like, a couple months, and see if your leak symptoms get better. Cause if they do, then that means that you probably have a leak because you’re raising your spinal pressure by having this constriction.”
Brianne: Okay. Is it like around a chunk of your torso, kind of?
Krystal: Yeah, it’s basically around most of your torso. I think people also wear them after like, abdominal surgery to like, kind of keep everything together. But it also happens to raise fluid pressure. I don’t know terminology.
Brianne: Yeah. And I will say, like, I don’t know as much about CSF leaks because they’re like, too close to the kind of thing I get squicked out about. But so cerebral spinal fluid, which is like… what it sounds like brain and spine goo. And if your connective tissue isn’t optimal, it’s possible that the lining of your whole situation that keeps that goo inside can be punctured or kind of… I’m like rubbing my hands together as if people can hear me and know what that means. Yeah, and so obviously if it’s not sealed, then the pressure will go down, and if you’re vertical, your brain is going to feel that first. This is just for people listening, the really technical explanation. So that’s what the CSF leak is basically. And so now what you’re describing would be… it’s like, obviously you can’t put pressure on your brain. I look ridiculous, but people can’t see me. I’m like thinking about the words for head, but you can put pressure on your back by putting pressure on your whole body. I think. I know that I didn’t explain it any better than what you’ve said, but this is like context for people who aren’t used to this corner of the world.
Krystal: Right. I’m also going to adopt spinal goo into my vocabulary. It’s a great phrase.
Brianne: Yeah. Yeah. All of my words are just, “How can I talk about this not anatomically to trick my nervous system into not thinking that I’m talking about nervous systems?” because it makes me faint.
Krystal: Yes. Please tell me if I’m getting too like, detailed.
Brianne: Yeah. No, and you’re fine right now. Cause it comes up a lot like, in these conversations, and so sometimes I do start being like, I’m going to listen slightly less to some of these words. And if that happens, that’s why, but so far so good.
Krystal: Okay. Cool. But yeah. So when I put the abdominal binder on… as a side note like, I absolutely hated the binder. For some reason it like, makes me feel really like, depressed and like, ugly and gross. Like, I don’t know. It’s like, this weird psychological thing.
Brianne: Yeah. Like, a type of dysphoria, but yeah… cause dysphoria obviously, there’s gender dysphoria, but there’s other experiences. Like weird body not the way it wants to be thing.
Krystal: Yes. Weird chronic illness related dysphoria, but I can’t really put into words what exists in my brain.
Brianne: Yeah. That’s valid.
Krystal: And then I ended up talking to the nurse, so the nurse was really great. The specialist himself was kind of like, “Your imaging is normal, so whatever.”
Brianne: Yeah. “So why are you here?”
Krystal: Yeah. The nurse followed up, and the nurse was really great. And she was the one who suggested the abdominal binder. And after like, I think a few months of trying it, I was like, “I got better, and I’ve had like, almost no migraines and very few headaches.”
Brianne: And were you able to be upright more often? You were kind of doing more of your normal activities with it on?
Krystal: Yeah. For most of the workday I could. Nighttime always got worse because you’re upright for so long. Like, not even the binder could help you at that point.
Brianne: You noticed a difference, but it was not the same as not having the problem.
Krystal: Right. Yeah. So then, they can patch it up, and I eventually got that procedure. I had to have it twice because the first one didn’t take.
Brianne: Oh no!
Krystal: Apparently that’s normal. I would assume that it’s more normal for people with weird connective tissue.
Brianne: The injury is more normal for this population and also poor wound healing is normal for this population. Yeah.
Krystal: Yeah, right. The first time, I got up from bed, I guess a little too fast, and I was like, “Oh, that doesn’t feel right.” And then like, all the symptoms came back like, almost immediately.
Brianne: Oh no! You must’ve been so frustrated.
Krystal: It was so frustrating, and then I had to wait another like month and a half or something. And then with the pandemic, obviously things are slow and hard to like, schedule. And then like, my partner couldn’t come with me, either time. And I hate doctors.
Brianne: Right. Understandably.
Krystal: Yeah.
Brianne: And so the most recent one… obviously you said they were both during the pandemic, but the second one then, was relatively recently to when we’re recording, right?
Krystal: Yeah. I think it was in the end of October maybe. That one took, and so right now I’m sitting up.
Brianne: Yes.
Krystal: Like a human.
Brianne: Yes. It’s so exciting to be able to sit up sometimes.
Krystal: I told my primary care that when I saw him a few weeks ago, and he was like, “It’s amazing the things that you get excited about.” And I was like, “I know, right?”
Brianne: Yeah. You’re like, “You don’t understand what it’s like to have your brain be like, ‘Vertical is not happening.'”
Krystal: Yeah. I mean, EDS sucks in general and all the stuff that comes with it, but I think the CSF leak was definitely the most disabling symptom that I’ve had so far. And then of course, cause I’ve been horizontal for months, my neck is now a mess, and it hurts. But at least it doesn’t hurt because of the CSF leak. So I can like… I have pillows that I conveniently place around my body.
Brianne: Yeah.
Krystal: Yeah. And then I’ll get PT, probably next year, and that should help more.
Brianne: Yeah, I was going to ask you about that. You’ve probably seen me talk about this, but I just started PT this year, in October, I think. So I’m like a month and a half in or something, and I can’t do it every day. Like, I’m trying to be so gentle about it, but I already… on the days when I do it, I can really tell that my body is like, aligned better and so much happier. And then I kind of get mad that it’s like, “Why didn’t I start this 20 years ago? Why didn’t… Why wasn’t anybody looking for this? Blah, blah, blah.” But I let it go. PTs is really helping for me.
Krystal: Right. My first round of PT, which is before all this leak stuff happened, like, I was like, “Why does my body feel so much better with these random stretches that I’ve been told to do?” Like, it makes no sense.
Brianne: Yeah. All of my exercises are very gentle, and she’s given me some ways to make them a little bit more… like, more resistance or more difficult, but they’re still all lying on the ground. I have like, three sitting up exercises and one standing stretch, but I got to be like, “Hey, can you give me some modifications for, if I’m lying on my back all day?” She was like, “Yes, here’s your lying on your back all day workout.” Regular care does not stand up to this, to people who understand hypermobility. Okay. So that was in October. And then, it sounds like… this year must be really hard or to kind of, untangle if you were like, adjusting to the pandemic. You had come back from medical leave. I guess a while ago now, but like all of these things are kind of stacking on top of each other.
Krystal: Yeah. I came back from medical leave April. I found out about the leak early summer. I think my first patch was July. My second one was October. I also was like, I think a few weeks ago, put on anti-histamines, so both H1 and H2 receptor blockers. I don’t know. I haven’t really looked at terminology that much. And that has been amazing also.
Brianne: I started, just taking them at all with like, safe over the counter doses back in April, I want to say. Because I had been… I had a big crash in April. I don’t really know what happened, but anyway, I was like, “I feel terrible, and I’m sleeping terrible. And I need to do something, and I know people are talking about this.” And it was like, it didn’t make me not crashed, but it made my sleep so much better. And I was like, “I need to learn more about this later,” because I’m sure it’s not… it doesn’t work for everybody. Not everyone has the same underlying patterns, but like, it’s too much of a coincidence to ignore that a lot of people with connective tissue problems also have mass cell activation problems and also their sleep is impacted.
Krystal: No, your tweet from a few hours ago, I was like, “Oh my gosh.” Since I’ve taken it, a few days after, I’ve been sleeping so much better.
Brianne: Yeah. Yeah. It made a big difference for me. And then I like, just this week… after starting them in April, this week I’ve been really dysregulated again. And I was like, “I need to like, do some of the research to find out what the actual sleep histamine thing is.” And I had decided to do that, and then I got to interview Alex for a podcast episode. So, probably it’ll be like, right before or right after this one. Hard to say, but it’ll be in this batch. So there’s an episode, and it’s three hours. And Alex shared a lot of the research that they’ve done into this stuff because they had been diagnosed with narcolepsy and like, went really deep into sleep architecture and like, histamine cycles and all of this stuff. And I was like, “I have to do much less research now that I’ve been lucky enough to listen to this, so great.”
Krystal: I am excited to listen to it when it comes out, because I need to know.
Brianne: Yeah. Yeah. So I’m really excited to share that. What I really would love is for us to be able to see doctors and allergists who know about this cross-system problem, but that’s not the world that we’re living in right now.
Krystal: Right. At some point I see a neurologist who’s also kind of a sleep specialist, and basically they’re just like, “You have idiopathic hypersomnia. You’re always tired, but we don’t know why.” and I’m like, “That’s not helpful, but okay.” Now I kind of know why
Brianne: Right. It’s so hard when you’re like, “Okay, well what’s dysautonomia, and then what’s just like, ‘My body hurts because it’s taken so much abuse,’ and then what’s maybe a mast cell reaction or like, some other kind of immune problem?” It’s tough.
Krystal: I think dysautonomia is interesting because it can be caused by so many things. So I’m like, “What’s the pots? What is the mast cell? What is the CSF leak?” Cause that definitely improved my dysautonomia when that was fixed.
Brianne: Oh, yeah, I bet. And it’s so hard untangle. Okay. So since the running incident, which is when you became kind of more aware that like, something interesting was going on, did you go down any weird, unrelated research holes, or like, weird experiments that weren’t typical or kind of any of that other stuff during that time, while you’ve been also investigating and also a full-time student?
Krystal: So after the running incident, I… well, cause everyone always told me, “Oh, you’re so healthy. Like, it’s amazing how healthy you are.” So I didn’t really think it was anything major.
Brianne: Right. Or that it would mean… like that it meant something.
Krystal: I’ve gone down rabbit holes of auto-immune issues because I have all this inflammation that I’ve been trying to track, hence all the rheumatologists. I think it ended up being mast cell because it’s definitely gone down a bit since I’ve started taking the anti-histamines. But yes, I’ve looked at a lot of auto-immune stuff, so I’m quite educated about that now for some reason.
Brianne: That’s how I feel, too. It was like, I was in this middle stage for so long where it was like, “Something’s going on. What do I need to learn about so that I can get tests? Like ask the right questions or whatever,” but it was not like, any of those.
Krystal: Yeah. Yeah.
Brianne: And then, especially as you’re starting to look at mast cell, have you thought much or looked much into environmental triggers and diet triggers? Like, is that something that you’ve had to think about or has it been not a priority because it just hasn’t been the biggest fire?
Krystal: It hasn’t been the biggest fire. I also have this issue with tracking food. For just reasons that food is such a big part of my life and like, my social life, that like, anything that would make me think that I can’t eat a certain thing, just throws me into this spiral of like, anxiety.
Brianne: Yeah.
Krystal: Yeah. And then environmental triggers, I haven’t really tracked that much, mostly because it’s just too much work.
Brianne: Yeah. I feel like it’s the kind of thing where like, the position that you were in before you knew that you had a CSF leak… it appears to me anecdotally, that it’s like, if you’re that sick and you don’t find the information… so it’s like, if the binder hadn’t helped, I guess, and then you were like, “Okay, well, back to the drawing board.” I feel like that’s when definitely for me and other people have to be like, “Okay, do I really have to do this work of like, thinking about all of these other things?” It’s so much. And if it’s not the main problem, it’s like, an expensive time waste. God, I just want healthcare to know more about us already. That’s… is too much to ask?
Krystal: Same, yeah. So you’re putting out fires, so you put out the main fire. But then when you put out that fire, a bunch of other fires appear cause your body’s like, “I can focus on these other things now.”
Brianne: Yeah. “We have enough awareness for you to notice this thing that was probably already going on, but you didn’t feel it or whatever.”
Krystal: Right.
Brianne: Yeah. Sometimes it feels like it never ends. So since diagnosis, how has school been? Up until that point, you probably were just like, “I’m a student. Nothing to think about here.”
Krystal: So school… just school and research was not the worst. I was pretty lucky that my advisor and my lab are pretty supportive. And so like, it’s… I mean, it took a long time for me to use mobility aids around them, but like I eventually got there and it was fine. And now I’m just the girl with the cane.
Brianne: Yeah. Yeah.
Krystal: My lab is not accessible though, which is quite frustrating, and I wrote a whole article about lab accessibility, like a few weeks ago. What has been an issue… or what was an issue was, I also do field work on occasion. And field work for me, in my lab is you either go to the middle of a forest somewhere on top of the giant tower and put an instrument up there and you climb up and down, that’s one, or you gut out an old plane from the sixties that is now owned by NASA, and you put a bunch of instruments and a bunch of scientists fly around into… I think the last one was fire plumes or something like, smoke plumes.
Brianne: Okay.
Krystal: The second one, so this the plane one, I almost couldn’t go because you had to fill out a medical questionnaire and the doctor denied me participation access. It wasn’t like a, “Okay, let me talk to you as a doctor and see what your needs are and…” you know. It was just like, “No.” It was outright like, discrimination. Like, “You’re not allowed because you have some kind of thing wrong with you.”
Brianne: Yeah. And like, probably something that the doctor didn’t really understand. Like, “You have a scary-looking thing.”
Krystal: Yeah, I think I mentioned my medication, which at the time was an SSRI that also worked for fibro, I think. I mentioned that I can’t lift more than 40 pounds because I would hurt myself, and I mentioned that I use a mobility aid on occasion, not even all the time, just sometimes. And they’re like, “You’re a danger to the whole mission.”
Brianne: Yeah. You’re like, “Okay?”
Krystal: And I’m like, “Am I though? Like, nothing changed. Like, I can still… like, I don’t need to do any of the, like… I don’t need to walk. I don’t have to carry things. I have teammates who can do that, and they know my needs. We ended up fighting it, my school and I, but it was this whole thing where like, I had to jump through so many hoops. At one point they were mad that I was taking medication, even though they didn’t bring that up the first time.
Brianne: Yeah.
Krystal: I don’t know. I think we eventually won. I probably called them out on Twitter. That probably helped. No one confirmed this for me, but I remember making a post on Twitter. And I remember someone commenting, “I’m going to contact this person.” And then the next day, all of a sudden they’re like, “Oh, things are moving again, and we’re going to try and fight this more.” Cause we had given up like literally two days before that. And they’re like, “Someone called someone and was like, ‘What the hell is going on?'” And I’m like, “Did I cause something?”
Brianne: “Oopsie.”
Krystal: Yeah, that was one of the biggest things that has happened since all this chronic illness stuff is just being denied access to my work. This was a big project that could end up in my dissertation. Like, I was responsible for stuff. I dunno, it could have like, set me back depending on where this project fell in my like, priority list of research projects. And then just like, I can’t stay in lab… like, grad school is just like, you work 24/7, and I can’t do that.
Brianne: Yep. Yep.
Krystal: I can’t skip meals to run an experiment cause then my body gets all shaky and everything gets thrown off. Yeah. Grad school’s a mess when you’re chronically ill. I think that’s the takeaway.
Brianne: Yeah, that’s a very fair takeaway. You’re right, the hours are ridiculous, and there’s like, a presumption that the work is your first priority over your own body. Not just like, “You should care more about the work than your friends,” which is also weird, but yeah. Yeah. It’s intense.
Krystal: Also, people don’t really know how to talk to you, like asking how you are.
Brianne: Yeah.
Krystal: They’re like, “Are you doing better?” I was like, “Define better.”
Brianne: Yeah.
Krystal: And like, I can’t really complain because then they’re going to like, start feeling sorry for you. If you come with a new mobility aid, that’s a whole thing.
Brianne: Yes, it really is. You’re like, “This doesn’t mean anything.” You know, one of my friends who I’ve known a long time and who has definitely had some like, adjustment learning curves around like, chronic illness and stuff cause it is hard to wrap your… like, nobody knows anything about it until they get exposed to it because of other like representation problems, blah, blah, blah. But one of my friends was like, “I’ve realized that you just don’t want to have to explain it to people.” Like, I want people to understand, not that I don’t want them to care, but like, those kinds of questions of like, “Oh, something’s different. Tell me about the difference today.” Like, there’s so much small talk that’s oriented around if you’re like, better or worse than last time you saw someone, and that’s not good small talk for us. It just sucks.
Krystal: Sometimes I just want to complain. Like, I think my latest Twitter post was like, “Oh, my rib is out and I have to wear a wrist splint today.” And people were like, “Oh, that sucks.”
Brianne: Yeah.
Krystal: That’s so much better.
Brianne: You just want a calibrated response that’s not like, panicking about things that you’re like, “I can’t panic about this anymore. I don’t have the energy for it.”
Krystal: Right.
Brianne: Take your panic energy elsewhere.
Krystal: I’m just like, “Oh yeah, my ribs do weird things. No need to worry. It’s fine.”
Brianne: Yeah. Yeah. It’s annoying, but it’s not like, an emergency. This one thing isn’t.
Krystal: I think this also trained my partner to like… he like, looks at my face before he freaks out. Cause he’s like, “Okay, you seem okay and calm about it, so I’m not worried.”
Brianne: Yeah. And like, usually that’s a good one. I know my own like, capacity to interpret whether or not something’s in emergency is also not very good, just because I’m like, “Oh, I’ve lived through a lot of things that might’ve been emergencies, and I didn’t know it. So maybe everything is.” But you’re right. People should definitely trust us and our own level of worry. I specifically run into that. My husband will be like, “Wait, describe it again. I would be worried if I was having that experience. I’m concerned that you’re not.” And it’s like, “There’s a medium in here between catastrophizing and medical trauma, I guess.”
Krystal: Right. Yeah. He’s like, “Are you sure you’re okay?” And I’m like, “I promise I’m fine. It’ll eventually go back into place at some point. I don’t know.”
Brianne: Yeah, “I need you to trust me that this one, we just have to wait out.”
Krystal: I also like… so many bad experiences at the ER. This is a universal issue with chronic illness.
Brianne: Have you been since you knew or some before?
Krystal: So I think right before the initial fibro diagnosis, I had like, this huge flare, it was a lot of nerve pain like, chills and dysautonomia and the whole ordeal and like, difficulty breathing, I think. I don’t remember. I went to the ER, and they basically like, gave me a chest x-ray and like, made me go. They’re like, “I dunno what to do with you. It’s probably fine. We’re not even going to bother with your nerve pain. We think you’re anxious.” One of the doctors who did the intake was like, “Oh, you seem really anxious.” And I’m like, “Yeah, because my arm really hurts from nerve pain, and I can’t really breathe.”
Brianne: Yeah. Yeah. You’re like, “That’s not… that’s a normal reaction to this situation.”
Krystal: Right. And then I think they probably gave me a chest x-ray to like, say they did something, and then that was it. And then the second time was… I was weaning off some medication, and I guess I weaned off too quickly. But it also came with a whole bunch of triggering other symptoms. And so I went to the ER, and I’m like, “I think this is what it is, but also I’m having all of these other things. Here’s my medical history.” And like, I was all prepared. It was great. But my… I think it was a physician’s assistant. He didn’t appreciate my preparation. He saw some old test results because it was in the same medical group. And he’s like, “Oh, your, your blood tests look perfectly normal. How do you know you have this EDS thing?” And I’m like, “I went to a doctor, and I showed the nurse who brought me in all of my medical forms, printed out from this doctor. Like, excuse me?” And then he was also like, “You’re listing too many things that are wrong with you. What are you actually concerned about?” And I’m like, “All of them.”
Brianne: Yeah, like, “That they feel related because they ebb and flow together. Like, it’s not possible to… it’s never that just one of them needs to be fixed. It’s this whole weird pattern is not great.”
Krystal: Like, it’s a systemic illness. So if one thing is wrong, everything else is wrong. And I don’t know which one I should be more concerned about hence, I’m in the ER.
Brianne: Yeah. We need like, an entire other pathway to care for that kind of thing where it’s like, “I mean, it’s not an emergency in the sense that, like, I don’t know that I have an acute wound that requires attention. But like, it feels very urgent because I didn’t used to feel this way all the time, and I suddenly do. And I thought that doctors were supposed to care about that, but they often don’t…” also don’t have like, time, frankly. I know this is not just an individual doctor issue. The system is literally not designed for patients like us, and we’re the ones who feel the brunt of that, but oof.
Krystal: Yeah. Yeah, this is why I don’t go to ERs if I don’t have to. I don’t go to urgent care if I don’t have to like…
Brianne: Yeah.
Krystal: The more I can stay away from any type of like, medical place is fantastic.
Brianne: Yeah. Especially now when it’s like…
Krystal: Yeah. Well, especially now I’m like, “I’m not going anywhere near them.”
Brianne: Yeah. And then how… how has that been, to be visiting so many medical facilities this year when obviously infection risk was a big concern for everybody, and like, it is kind of difficult to evaluate risk factor for this EDS, dysautonomia, MCAS trio because people don’t usually include it on risk lists?
Krystal: Right. Yeah. So obviously, I don’t know if I’m high risk. I know that it’s probably not a great idea to get COVID because something’s going to go wrong.
Brianne: Yeah.
Krystal: And then I could possibly trigger something else to happen. Who knows? I have been going to in-person doctor’s visits, but they’re pretty sparingly. They’re like, once every few months, so I don’t think that’s too high of a risk. Sometimes when it was like, peak COVID numbers, I would kind of like, push them back a few weeks. But aside from that, like, it’s probably the same risk as getting takeout for me.
Brianne: Yeah, definitely. And for procedures and stuff, did you find… I guess that was in the summer, so the hospitals were in pretty good shape?
Krystal: Yeah. So that was July and October. So before… obviously before Thanksgiving mess. I don’t know what else to call it, but a mess. Yeah, so it wasn’t that bad. I don’t think… I mean, I think there was reduced capacity, so like, I had to wait a bit, and they were understaffed. So like, it took a little longer to get a bed and all of that.
Brianne: Yeah.
Krystal: It wasn’t the worst.
Brianne: But it like, felt safe?
Krystal: Yeah. It felt safe, but it just sucked because I couldn’t have like, my partner with me for any appointment. I really hate going into appointments by myself because they don’t listen to me as a woman, a woman of color.
Brianne: Yeah.
Krystal: Even if I pretend to be like, scientist grad student, Krystal, like… they’re like, “Oh, you’re a hypochondriac because you know too much.”
Brianne: “You’re using too many fancy words, and the only reason people use fancy words is to lie about their health to doctors.”
Krystal: Right. So I often like, play… I don’t know. I’m trying to kind of think of a different word here.
Brianne: I think like, ignorant or like…
Krystal: Yeah. I undermine my intelligence a bit
Brianne: Yeah.
Krystal: To not seem too, quote, unquote, smart, because then they get weirded out by that. But I also can’t seem too… I don’t know. Like, there’s a balance.
Brianne: Yeah. I think one thing that’s so hard about that, especially to me now, having done so many interviews where people talk about their kind of like, approach to doctors. I think it’s so clear to so many of us that like, “Yeah, being kind of tailored to that person does make a big difference in how they respond to me, and that’s unfortunate.” But then there’s also so much luck involved. Some doctors are just never going to help you because of whatever bias they have, and there’s nothing that you can do to fix it. And it’s like, “Okay, so I have a lot of control and also no control. Good, good.”
Krystal: Yeah, it’s really a crap shoot in what biases to these doctors have? What are they applying to you? What do they think of you when you walk in the room? I’ve had so many doctors, if I’ve come into an appointment with a cane, they’re like, “But you’re so young.”
Brianne: Yeah.
Krystal: That doesn’t mean I don’t need a cane.
Brianne: Yeah. And like, “My goal isn’t to like… not using a cane isn’t a primary goal of mine.”
Krystal: Yeah. Or they kind of like, undermine it. They’re like, “Well, if you think you need it.” And I was like, “If I didn’t think I need it, I wouldn’t have used it.”
Brianne: Yeah. “I’m actually not interested in your opinion on this issue. This isn’t why I came here. Cane’s not about you. It’s about my balance and/or joints and/or injury and/or whatever.”
Krystal: Right.
Brianne: Yeah. Yeah. There’s like, the normal crap about dealing with people who just don’t want to believe you. It’s unreal how widespread it is. And like, you were just talking about the intersecting biases that can really… and they’re… sometimes they’re strange. It’s like, there’s some things that you kind of know to expect bias, like gender or race or class, especially in medicine, and then there’s also this other thing of like, “Well, do you sound like, like you should be using medical terminology because I’ll let it slide if you like, took a nursing class once, and can explain that to me. But like, if I think you learned those words on the internet, I’m not going to listen no matter what else I know about you.”
Krystal: Yeah, it’s so frustrating too as like, a PhD student cause like, that comes with an enormous privilege of like, once I get my degree, I can be like, “I have this degree, so obviously I can research.” But like, that intermediate stage where like, you don’t have a title, and they’re just confused as to why you know all this like, scientific terminology or, “How can you read medical literature?” And I’m like, “Cause I happen to be trained in this stuff.”
Brianne: Yeah.
Krystal: And if you’re not trained, like, you develop these skills really quickly.
Brianne: Cause you have to.
Krystal: Yeah, it’s a necessity.
Brianne: Yeah. I mean, some doctors really are open to people bringing stuff in, which is awesome, and it’s great when it happens. But it’s like, when you bump into a couple of doctors who you can tell, just don’t believe you, because they’ve decided like, first thing, that you have nefarious intentions, like, it’s a really distinct feeling, and it�
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