No End In Sight
Brianne Benness
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69 – Adriana
No End In Sight
11/29/20 • 65 min
Adriana E. talks Ehlers-Danlos Syndrome, finding a new balance after diagnosis, and unpacking your own internalized ableism.
TranscriptI’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Quick update before we get started: This is the last of the interviews that I recorded in 2019. I’m really excited to finally be getting it out there, and I’m also excited that this means that work really is underway on our next batch of episodes. I’m so grateful to the folks who have signed up to financially support the show at patreon.com/noendinsight, and this week I want to thank Wingspan Health for sponsoring the episode transcript.
So far, I’ve recorded five new stories and I’ve hired Drew Maar, who you might know as @fibrofuckboy on twitter, as a new associate producer to get things running more smoothly. You’ll be learning lots more about Drew over the next couple episodes, so for now let’s travel back to the fall of 2019 when today’s story was recorded.
Today I’m talking to Adriana E about Ehlers-Danlos Syndrome, finding a new balance after diagnosis, and unpacking your own internalized ableism.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
[guitar riff]
Brianne: Well, I like to get started just by asking people, how was your health as a kid?
Adriana: Alright. So that’s kind of a difficult question because I thought it was normal up until I got my diagnosis and then I started thinking back, and I’m sure I can’t remember everything, but it explains a lot of things. I was delayed in standing and walking. I also was really physically just slow. Everyone thought I was just lazy, and my nickname when I was growing up was Eeyore.
Brianne: Oh, no.
Adriana: Yeah. All my teachers even called me that. It was like, you know, “This is their cute name for me, I guess.” Yeah. And then, I could always do random things like, bend things weird... like party tricks is kind of what we call it. And then, the last one would be that I always had pain, and I was always told that it was just growing pains. And it wasn’t until recently that I was like, “Wait, that’s not possible when you’re in your twenties.”
Brianne: Yeah. Yeah. You stopped growing. And so that one’s a really interesting one to me, partly... so I had growing pains that were growing pains, and I didn’t realize that it was such a common thing that doctors say to people who turn out not to be having growing pains. So what was that pain like? How did it feel?
Adriana: So I think it felt actually like growing pains, cause they were just random, everywhere, but I think they were more intense because of my condition. It kind of might’ve made it more difficult, so things were stretching and you know, being... or contracting or just doing weird things... joints being weird. So I think it was more that it happened more frequently with me, but they kept brushing it off. So at one point I just didn’t even complain about it anymore, and it wasn’t ever severe. It’s just like... yeah.
Brianne: Yeah, just uncomfortable. Okay. So, some discomfort and flexibility obviously, and then fatigue. And that was just how your body was. And I think... this comes up all the time too. I feel like as kids, we don’t really know how other people’s bodies feel, so unless it’s something that is obviously an acute crisis, there’s no reason to even think that something weird is going on. Okay. So was there a moment for you when things started to change?
Adriana: Kind of. I always... my health was always just inconvenient. I always was going to the doctor for things that I had... I have hypothyroidism and then I have anemia that comes back that I always have to treat. So I always thought something was up with my health, but they were so minor, and unrelated-seeming that I just brushed them off. But then it... my health took a dramatic turn. When I... two years ago, no, a year and a half ago, where I just... everything started going wrong. All systems.
Brianne: Okay, all at once.
Adriana: All systems failure. Yeah. All at once. It was one by one, but it was super quick, just dramatic decline in health. So, it wasn’t until recently, but I think I always knew that something was gonna happen to me.
Brianne: Yeah. Yeah. There’s like a, “Oh, wait a minute. These things that have always been normal for me, it turns out aren’t normal for other people.” And like, “Does that mean anything?”
Adriana: Yes.
67 – Valerie
No End In Sight
05/16/20 • 94 min
Valerie Novak talks fibro, POTS, borderline personality disorder, diagnostic ambiguity, and using mobility aids when your abilities fluctuate day to day. Transcript I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness. So first off, I am obviously still not on a regular schedule and I want to ...
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66 – Caitlin
No End In Sight
04/15/20 • 67 min
Caitlin talks epilepsy, EDS, and life with chronic pain. Transcript I’m not Brianne Benness and this is No End In Sight, a podcast about life with chronic illness. Brianne is in the middle of a flare right now so I’m going to keep this short. Rest assured that more episodes are coming. If you want ...
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65 – Christie
No End In Sight
03/19/20 • 70 min
Christie Margrave talks endometriosis, IVF, and the mix of emotions when a diagnosis comes decades after your symptoms first started. Transcript I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness. So clearly I’m still not up to keeping a regular schedule, and I just want to acknowledge ...
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64 – Patti
No End In Sight
03/06/20 • 114 min
Patti about Ehlers-Danlos Syndrome and ADHD as well as medical gaslighting, mental health misdiagnoses, and growing up with an undiagnosed illness. Transcript I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness. First off, here’s a quick reminder that if you’re enjoying this show and also have a ...
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63 – Michelle
No End In Sight
02/20/20 • 89 min
Michelle Irving talks autoimmune hepatitis, migraine and vertigo. Michelle also shares a lot about her spiritual and emotional experiences of illness, her focus on self-compassion, and how she’s used Greek mythology to build a map that makes sense of the chronic illness cycle. Transcript I’m Brianne Benness and this is No End In Sight, a ...
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62 – RAA Dakar
No End In Sight
02/07/20 • 111 min
R A A Dakar talks ME and fibro, the isolation of chronic illness, and mourning the person you used to be. Transcript I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness. As usual, here’s a quick plug for my patreon campaign just in case you’ve been enjoying ...
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61 – Mahalah
No End In Sight
01/30/20 • 86 min
Mahalah May talks chronic constipation and incontinence, fibromyalgia, vaginismus, and IBS. Transcript I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness. Of course I’m going to start by reminding you about my patreon campaign just in case you’ve been enjoying the show and also have a few ...
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60 – Suzanne
No End In Sight
01/23/20 • 85 min
Suzanne Lahna talks chronic migraine, medication side effects, and making hay while the sun shines. Transcript I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness. First off, I want to thank my new patrons Meredith and Sari! My patreon campaign is a really simple way for listeners ...
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74 – Crew Dog
No End In Sight
06/19/21 • 121 min
Crew Dog from One Sick Vet talks connective tissue, mast cell activation syndrome and veteran disability services.
TranscriptBrianne: I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
[guitar riff]
Drew: Hey this is associate producer Drew Maar. Before we get started, we wanted to remind you that No End In Sight has a newsletter. It’s full of updates about twitter conversations happening in our hashtag #NEISVoid, book and article recommendations about chronic illness and disability, and links to new podcast episodes and miscellaneous other media. If you are comfortably able to support our work, there are paid options available, but all core content will be free. You can take a look at previous newsletters and subscribe over at NoEndInSight.substack.com. Today we’ll be talking with Crew Dog from One Sick Vet about connective tissue, mast cell activation syndrome and veteran disability services. A few content notes for this episode: There is talk of the military throughout this episode, including a mention of the Gulf War, Desert Storm, as well as 9/11 and the ensuing wars around thirty minutes in. And Crew Dog and Brianne refer to the pandemic a few times throughout the episode, but they do not talk about COVID or lockdown very extensively in this episode. 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.
[guitar riff]
Brianne: So I like to start just by asking people, how was your health as a kid?
Crew Dog: Which is an interesting question because like you, it’s a lot of retrospective work for me, and I would have always said that my health was excellent.
Brianne: Yeah.
Crew Dog: And I think that’s still a fairly accurate but what I’ve come to recognize is that primary parent is sort of in denial about health issues. And so they always told us that everyone in our family had excellent health.
Brianne: And that’s how you knew, Right.
Crew Dog: So I really don’t have the same history of... that some chronically ill and disabled people do of not being able to do sports or having pain that prohibited me from doing things. I was a very active child, but I now believe that I have a connective tissue issue. And that... I can look back now on incidences where I got hurt and I was in pain and adults told me, “You don’t have any broken bones. So you’re fine.”
Brianne: Right, right. So there’s no pain cause. That’s the only way pain happens.
Crew Dog: Exactly, “If it’s not a broken bone, you have no pain. Go away. Shake it off.” But I can look at a significant incident when I was in about eighth grade. And at the time, at school in PE playing basketball, I received a very severe sprain to an ankle. And, of course, we also didn’t have health care when I was a child. So there was a lot of things that we didn’t pursue care for. But it wasn’t until three, four years ago when I was working for... with a physical therapist for a different injury that I... you know, she sort of explained to me that there’s three ligaments that go across your ankle, and I’m now convinced that I ruptured one of them.
Brianne: Eugh!
Crew Dog: It was a sprain, but I think that I completely ruptured one of those ligaments. But we didn’t have healthcare. So I got an ACE bandage and crutches for a couple of weeks.
Brianne: Maybe some ice.
Crew Dog: And I spent a whole summer running and sort of trying to train my foot to go back into the correct position. Because it wanted to cheat outward. So...
Brianne: The guard rails were off.
Crew Dog: Yeah. So I was very fortunate that I was able to be very active and do everything that I wanted to do physically as a child. But I do think that I was accumulating connective tissue damage all the way along, and it was never recognized or treated.
Brianne: Yep. I can see how that would happen. Oh, scared eyes. Yeah, and that is of course, very relatable to kind of look back and go, “Oh, those might’ve been significant injuries, but I wasn’t thinking about them that way at the time time, even if I was injured for weeks at a time or a month at a time.” I feel like there’s a piece of it that’s like... yeah, when you were a kid and if the people around you think it’s not a problem, then you’re like, “Okay, I guess it’s normal to do this,” or whatever it is. Especially if your condition is genetic and the people around you also had similar experiences. Yeah. Woof. Okay. So that...
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FAQ
How many episodes does No End In Sight have?
No End In Sight currently has 79 episodes available.
What topics does No End In Sight cover?
The podcast is about Health & Fitness, Medicine and Podcasts.
What is the most popular episode on No End In Sight?
The episode title '76 – Krystal' is the most popular.
What is the average episode length on No End In Sight?
The average episode length on No End In Sight is 87 minutes.
How often are episodes of No End In Sight released?
Episodes of No End In Sight are typically released every 7 days, 5 hours.
When was the first episode of No End In Sight?
The first episode of No End In Sight was released on Sep 20, 2018.
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