Latest / Tom's Hirschsprung's Podcast / Episode 25 - With Ashley Yodkovik @chronicallygimperella

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Episode 25 - With Ashley Yodkovik @chronicallygimperella · Tom's Hirschsprung's Podcast

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You are listening to Tom's Hirshprung's podcast, where I provide a look into the
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remarkable experiences of the most inspiring people around Hirshprung's disease and sports. Hello and
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welcome to episode twenty five of Tom's Hirshprum's podcast. A very special guest,
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indeed, this this afternoon, I have Ashley Yodkovic with me. She's a
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podcaster herself, the host of Chronic Combos and also describes herself as a dog
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mum and a Broadway singer and was also a clinical health worker for for I
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was seven years. So welcome Ashley, Thank you Tom. I'm so excited
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to be here. You know, you were on my podcast recently, actually
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just what like an hour ago. Yeah, I've probably left you that yeah,
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yeah, less than that. But you and I like just connected recently
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and became really fast friends, and so I'm just really excited and honored that
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I had asked you to be on my podcast and then you're like, well,
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can you be on mine too? So I'm just really honored to be
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here. So thank you so much. No, thank you, No,
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it's we've blown the color of editing within ten seconds. So we don't people
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know we're recording this up site, but it's it's all exactly. We put
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have a group project after and edit together rag exactly exactly that way. Nice
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to do it in school. Just have like a homework as timon group projects.
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Yeah, I think, yeah, yeah, we've just were just end
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up just copying each other's homework. Will be absolutely exactly there you go,
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exactly exactly. I love it. But no, thank you so much for
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the coming art. And as we said, we've we've recorded an episode about
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me for you, and now you're going to do for you about you for
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me. So no, it be absolutely fantastic. And the reason I want
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to talk to you this is going to be more of a sort of chronic
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illness story, but a positive story, a triumph over over chronic illness.
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And and boy do you have a lot of chronic illnesses. But it's yes,
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we'll talk about a few in a set. But I'd love to start
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sort of right really from the beginning, because I've listened to your your podcast
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again Chronic Convos and something that's a really good episode in there is episode five
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where you have your your parents are and he talks your parents about about van
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you as a wild and you sort of growing up and not really knowing,
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you know, having these things happen, but not really knowing sort of what
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they are or how they affect you. And I'd love to if you don't
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want to start from there, And to start, you need to describe yourself
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as quite clumsy, I think to begin with, but then that just sort
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of being seen as oh, well, actually is just quite quite clumsy.
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But actually it was more. It was something a bit more than that thing,
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wasn't it. Yeah, thank you for bringing that up, because now
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that I'm in my adulthood, and then, like you said, after talking
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with my parents, So one thing is I was always best friends with the
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school nurses from even and I'm sorry, I don't know what you call it
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in the UK, but preschool before you enter like primary school. So like
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when I was like age four, I was always that kid that got sick.
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And I know you get sick as a kid like a lot, but
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I was the kid and got everybody's sick like no matter what, Like I
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would just return from being sick and then I got sick again. So I
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was best friends no matter what grade I was in, you know, with
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the nurses and so and yeah I did fall a lot, I did get
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injured a lot, but doctors would just say, oh, she's growing,
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she's clumsy, and you know, there would always be a running joke with
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my family and my friends, and then even myself, I'd just call myself
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a klutz. But now, looking back on it, I'm pretty sure it
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had to do with a lot of the forms of arthritis that I have,
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as well as I've had really bad migraines since fourth grade. And again,
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I'm so sorry, I don't know the comparison. Anno, Okay, yeah,
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so for three years old, but they would always say, oh,
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you're dehydrated, like you need a drink more and that's why you have a
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headache. But looking back on it, I'm almost certain it was a migraine.
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And as you know, I was just in the hospital for a really
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bad migraine that actually mimics stroke like symptoms. And so looking back on it,
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I'm pretty sure, like neurologically, not that I have a huge neurological
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issue now, thankfully, but I think that with the arthritis and maybe some
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other things that were brewing, I think were the reason why I was so
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clumsy, Because I played sports here and there, but I was more of
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a performing arts person. Like you said, I'm a professional singer or I'm
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a trained singer trying to be professional singer, and so yes they did.
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I did singing, dancing, and acting. I did a little bit of
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sports, but other than that, I would just play like a kid.
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But somehow I always like was tripping over something or I always got hurt.
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And the thing I remember in fourth grade is like got it's gonna sound funny.
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I got into a really bad dodgeball accident, if you will. I
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remember this one boy that like used to love bullying me, and then this
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other boy who was really good friends with me. I was the last one
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on my team, which I was really proud of because I was really bad
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at sports and I was running on the asphalt and they both they both threw
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the ball at my feet at the same time, and all I remember is
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like landing on the asphalt, and because I was in karate at the time,
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I was able to save my face, but my knees like went straight
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into the asphalt, and I remember kind of blacking out just because even though
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I saved my face, it was just such a hard hit into the asphalt,
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like I blacked out, and I have a scar to this day from
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now, which actually was the start of like the arthritis I have in my
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knee. And so I just remember things like that, and again just always
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being sick a lot. And when I would get sick, like I would
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get really sick, Like even if a cold would go throughout my family,
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like my sister would have it or my parents, it would be like getting
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the plague like for me, like and it took forever to feel better.
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It would take multiple rounds of antibiotics. So just just things like that,
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I think would always I just feel like something was brewing, and just a
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lot of doctors just didn't know or either they didn't know because it was the
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nineties, or they just you know, didn't want to deal with that,
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you know, which we unfortunately see that too in the medical community. So
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just kind of crazy. How now, looking back on it as an adult,
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how that might have festered a little bit. Yeah, sure, I
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think as we were talking about as well when we when we did the episodes
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on your podcast about the nineties and about how things I'm not to sort of
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spoil my story, but how things were different in the nineties and how people
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people just didn't know as much, you know, and especially certain neurological issues
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and things like that people just didn't just didn't know, just didn't know.
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And then we were talking thirty odd years ago at this stage, so it's
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yeah, so it is a completely different time. But I think it's really
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interesting to look back to that and go, yeah, I wonder what would
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have happened if what we know now would have been would have been applied.
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But I wanted to talk to you about, you know, a couple of
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conditions that do you have just a couple, but about have I got this
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correct? By bib bib that's the one? Sorry, my handwriting is appalling
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and I'm trying to think, oh yeah, And and as you and I
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were talking offline, like it's like we have to like learn how to say
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our own conditions, right, and then we like abbreviate it like in the
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fibro of my algic community will be like, oh yeah, it's fibro,
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like you know, its just like it's kind of like we have our own
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like dialogue after a while, right, It's crazy how that happens. And
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before I answer that, the only other thing that I forgot to mention is
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when I was a little kid, I used to get double ear infections and
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really high fevers a lot, and that that'll bring me, that'll segue into
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one of the rare conditions I have. But I just wanted to I forgot
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to mention that part to set the scene. But yeah, five on my
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alga kind of interesting. So that was the first autoimmune issue, if you
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will, that I was diagnosed with, and that was in twenty fourteen,
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so not too long ago, and it was diagnosed with a rheumatologist and it
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was and there's eighteen pressure points and I'm pointing to two of them right here,
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even though this isn't videotape, but like two of them are right where
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you're let's see where your shoulders kind of meet like your collar bond. So
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there's eighteen pressure points, and I forgot if you have to have all eighteen,
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or like I think you have to have like a majority of eighteen in
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order for it to like be qualified as bibromyalgia. And because there's like no
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blood tests, there's no X ray, there's no nothing, so it's basically
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really off a symptomology and then they like kind of you know kind of poke
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you like the like the Pillsbury dough boy if you will, on these eighteen
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pressure points and uh, you know, and that's how you get diagnosed pretty
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much. And so I remember when I got diagnosed, I cried for a
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week because not only did I get diagnosed with that, but that knee,
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that dodgeball accident I was talking to you about. My knee was really hurting.
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It was really hard to put weight on it, and so I was
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lumping a lot. And they had taken an X ray on my knee and
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said, oh, you have the start of osteo arthritis. So being told
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that, you know, in twenty fourteen, so what I was twenty five
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at the time, and I'm aging myself and I really don't like that.
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Anyways, that was hard. I remember my mama was with me, and
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I just baled my eyes out. And the reason I did that it was
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more so because we had a family friend with fibromyalgia, and that family friend
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is always very negative about it and always talks about it and always talks about
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the pain and always just how much it hurts and sucks, and you know,
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and just keeps going on and on and on, even if that's not
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what we're talking about, you know, conversation wise, and so in my
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head, I'm like, oh my god, that's what I'm going to turn
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into. And so that's why I cried for like a week. But then
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the light bulb went on and I'm like, wait a second. It's all
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about attitude, and so if I choose to be positive, maybe it won't
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be as bad as I think it is. The interesting part too, is
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so for a majority of my life, I have been overweight. I was
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one hundred pound. I was one hundred pounds heavier. I used to be
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two hundred and sixty six pounds, and I'm sorry, I don't know the
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conversions with kilograms, but I was very heavy and I lost one hundred pounds
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and I was able to maintain that because all my life too. That was
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another thing. My doctors always said, once you lose weight, you'll feel
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better, right, and you won't have these conditions, right. So it
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was really interesting that even though after I had lost all that weight, I
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was still diagnosed with some of these conditions. So it was just kind of
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crazy how I kind of proved them wrong. And I'm sorry I misspoke.
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This was my first autoimmune issue that I was diagnosed with it, but I
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was diagnosed I had asthma. I was diagnosed with asthma in sixth grade,
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and then I was diagnosed with a gynecological issue called polycystic ovarian syndrome in middle
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school, which at the time was also a lot of doctors didn't know how
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to treat it, so they just threw a bunch of like hormone pills at
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me and said you need to lose weight, and they didn't really know how
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to treat it, and that felt very isolating. And then they just said,
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you just need to lose weight and it'll reverse itself. And that was
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the funny thing too. When I lost all my weight, it didn't reverse
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itself. So it's just like here we are, and it's just like I
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don't know if it's just me or if they need to go back and read
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up on this, because what they're telling me is obviously not true. And
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so I thought that that part was really interesting, you know. And so
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there would be times where the fibromyalgia does flare for people who don't know it's
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a chronic pain syndrome, and it's all over like, yes, there's eighteen
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pressure points that are very tender. But sometimes there's certain clothes I can't wear.
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It literally feels like my skin is crawling. Like sometimes that's how much
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it hurts. Sometimes you aren't so much pain, call it a fibri fog
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where you can't really put sentences together because you're just in so much pain.
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Sometimes light and sound will affect it, just the extra stimulation. So it's
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a really interesting thing. And the other thing is people call it like a
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throwaway diagnosis. And my dad I Love him to death, was one of
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those people. He was in the healthcare system as you were referring to episode
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five on my podcast, and he called it a throwaway diagnosis, which was
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which was pretty painful. And at the time, also they weren't calling it
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a chronic illness even though it's something that there's no cure for and there's you
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know, it's it's it's an it's an inflammatory disease like it's you know,
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like you can't get rid of it, and it is inflammation, like what
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else would it be. So it was kind of like there was like this
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uh, like you know, disagreement within the the meta community, but it's
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kind of like at your expense and it's like, how how do you deal
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with something like that? And what they throw at you is a bunch of
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pain medications and or they put me on an antidepressant because it's supposed to apparently
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help with pain, which it didn't off. And you know, yes,
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there is depression that that comes with that, but at the time I wasn't
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depressed. I was again just really trying to make the best of it.
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And and like you said with your HD, just kind of getting to know
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my body like if I overdid something like if I stand too long, or
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I need to sit like things like that. Just kind of getting to know
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like if I've overdone it, and what this feels like or what's not what
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doesn't feel good? Yeah no, and accepting that sometimes could be really really
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toss and going, actually, I need to sit down, and maybe I
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don't really born too, but I I have to because because otherwise, you
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know, I won't be able to do this that the other And again listening
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to Your Your Your Your podcast episode I think episode one and episode five I
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listened to and he said things like taking a shower just really took it out
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of you. It was really really difficult, and that kind of shocked me
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as well. And I knew a little bit of about fibermi algia a little
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bit, but it was a chronic conditioning. It was pain and whatnot.
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But yeah, that that that sort of sort of shocked me a little bit.
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Yeah, and I so again, growing up, I could not you
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know, my parents used to call me lazy because I went and clean my
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room and I'd always like be really tired after showering, and I still remember
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that, and I just thought, and I didn't sleep well when I was
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younger either, And again I'm like, oh, well, you know,
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all my doctors are like, it's because you're overweight. And I would also
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procrastinate a lot on assignments and stuff and so but looking back at it,
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it's because I wasn't feeling well. It wasn't because I was trying to be
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lazy. And I even you know, I was talking to my parents about
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that also offline, and I think some of it, like was in the
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episode, and I thought that that was just normal. Of now looking back
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at it, it's like, no, what I was feeling then is what
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I feel now as an adult. It's really challenging. I still use even
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when I'm feeling my best I still use a shower chair because when you think
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about it, you're doing a lot when you're showering, You're washing your hair,
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you're washing your body like you're you're doing a lot. And I thought
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that, and I knew being tired after a shower wasn't normal. But at
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the same time, I'm like, well, I guess other people go through
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this. But then when I started talking to people who are well, They're
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like, what are you talking about? And I'm like, oh, I
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guess this isn't normal, like and and and yeah, I literally have the
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rest after taking a shower, even using my showerge here, because it's like
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I just ran a marathon. It's the craziest thing. And people will be
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like, well, do you feel good after a shower? And it's like,
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that's kind of like a double edged It's kind of like a double edged
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question. It's like, I do it was refreshing, but I feel like
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I haven't slept in three days now. It's the craziest thing. Eve.
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That's yeah, I mean that, that's incredible. Again, it's it's not
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necessarily a condition. Really, that's terribly reverlent in terms of people have heard
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of it. And again, there might be a lot of people that listen
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to this who might think, oh, I know what that is. So
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i've you know, knowing that for ages, but it's not certainly not something
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I hear, you know, talked about all that often. And I'd like
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to also as well, speaking about sort of conditions and whatnot. You worked
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as a political health worker for seven years or so, is that right,
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A social worker? Yeah, social worker. Sorry, Yeah, that's okay,
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Yes, sorry, what made you think I really want to go into
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that that industry? Oh? I think you were asking a lot of people
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actually, don't ask me that. So, so my passion has always been
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performing art. And but growing up I was told I wasn't pretty enough,
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I wasn't talented enough, I wasn't thin enough. I wasn't going to make
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it. And I let people, you know, I let the naysayers kind
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of win because my my my passion was to go on Broadway. Uh,
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despite getting injured a lot, despite not always speeling well, that was that
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was my passion, being on stage. There's nothing like it. Just like
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you're so passionate about sports, I mean, you know, imagine your life
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about sports. I mean that's like imagining my life without without performing arts,
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it just it doesn't exist, do you know. But after a while,
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I'm like, and then my parents are like, you need a fall back
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career, because what if you keep getting no no, no, no no.
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I like, you know, you need a fall back career. And
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then in high school, I lost my grandparents. My grandmother who I was
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very very close to, and I actually was with her when she took her
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last breath, and that took a huge toll on me. I fell into
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a very deep depression. And you know, I finally realized after a two
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years and kind of let my grades slip, which having a mom as a
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professor, that's the worst thing you could do. And and so I finally
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realized, wait, my grandfather's still around, and I need to, you
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know, really take advantage of the time that I have left with him.
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And my grandmother would be so disappointed in me if she knew, like I
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was like being sad and not live in my best life in high school and
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going after what I wanted to. I also was introduced to what suicide was
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in high school because a lot of people I went to school with tried to
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attempt it or would do like self harm behaviors. I had a good friend
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who would cut herself and I didn't know what to do, but I knew
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that I needed to tell like a counselor or somebody like that, like,
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hey, you know, I know this isn't you know, this isn't normal
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kind of thing, and people just always seem to like seek me out for
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advice and help. And so I knew that I wanted to go into a
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helping profession. And so when I was in college, I thought I wanted
21:42
to be a clinical psychologist. But I really liked the hospital setting. I
21:47
like the adrenaline of like the emergency room and the ICU, and I like
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the crises. So I learned that through my dad, who worked in a
21:56
hospital, that wait, there's not a lot of clinical psychologists, there's clinical
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social workers. So through that, I wanted to become a clinical social worker.
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So through that, I just got to, you know, work with
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so many different populations with homeless VET trends, which I don't know if that's
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a huge thing in the UK, but it is out here in the US,
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and I feel like that should be an oxymoron. They're they're serving our
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country and keeping us safe, and yet they're homeless, and so if I
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can do anything to prevent that from happening, I would love nothing more than
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to do about that, because even being homeless, they're still just so humble
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and so appreciative when you think them for their service. So it really opened
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my eyes. I remember it wasn't a VET Trend that was saying this to
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me, but a client, a homeless client had just come from one of
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the offices trying to get income. Out here, we call it social security.
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I don't know what it's called in the UK. But they weren't treated
23:00
very kindly and they had asked me, They're like, why are you being
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so kind to me? And I'm like, well, you're a human being,
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Like I mean, our circumstances might be different, but but you're a
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human being. And they just like started balling and I'm like I did,
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like I wasn't sure. I'm like, did I see something wrong? They're
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like, no, you just like you see me or you see me as
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a human and like that. That is always stuck with me because I'm like,
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you know, I just want I'm treating you how I would want to
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be treated if I were in your situation. I didn't realize that people were
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so unkind, you know, and so I've always made that a point to
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no matter what population I've worked with, just to treat them as a human
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being and not take it personally, especially in a hospital setting. They're they're
23:44
when they're not feeling their best. But I've worked with homeless veterans, I've
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worked with with severely mentally ill, which is actually one of my favorite populations
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because they feel they're the my they're the most misunderstood, and I really want
24:00
to reverse that stigma. But I've worked with death and dying. I've worked
24:03
with, you know, people in the ICU. Unfortunately, right now,
24:07
I've been on medical leave due to all of my my illnesses, but I
24:12
really miss, you know, working in that environment and just advocating for people,
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you know. And it's funny, through advocating for others, I did
24:22
not realize I'd have to learn how to advocate for myself. That's been a
24:26
that's been a huge learning experience for me. So even knowing the healthcare system
24:33
as I do, I just didn't realize that, you know, you have
24:37
to advocate for yourself because if you don't, too is you know your body,
24:41
yourself, you know, you know, your circumstance is the best,
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so you have to be able to let others know that because they can,
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they will advocate for you in some fashion, but to you know, only
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a certain extent. So I just really love helping people, as you can
24:59
tell. That's also why I started this podcast, is just I wanted to
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connect with other people. I was dealt this hand with all of with this
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growing folder of help diagnoses. And I hate to tell you, Tom,
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yes, ten surgeries is a lot, but I have twenty eight in counting
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surgeries. So sorry that I I particulate that one. But uh, you
25:22
know, a little competition here, but I've kind of taken pride in that
25:29
in a sent just because it's like, Okay, if I can help at
25:33
least one person, then I've done my job, you know. So yeah,
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sorry, that was a very life feeling I'm giving you, like really
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long winded answers here, and uh, yeah, I apologize, I warned
25:47
you on the talk. So no, no, I love it. I
25:49
love it. I always think that I began to explain something, explain it
25:55
fully, you know, and you do, and nothing worse and explaining sort
26:00
of half half bait and not people think, oh, yeah, I wonder
26:04
if that or wonder if that, but like like on a novel, like
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okay, what's the next chapter kind of thing like a teaser. Yeah.
26:12
No, I'm not that diver of person. But no, as I know,
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we were talking so before and offline about about operations, and I've never
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met somebody who's blown me out the water like you were the opera Future.
26:30
Yeah, to be it's pretty mean, so much to eat, but it's
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yeah, and just sort of yeah, I've had twenty eight operations. I
26:38
thought, wow, Ted is absolutely darling, but it's yeah, but no,
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it's it's fantastic. And I wanted to pick up on something you said
26:48
there about being an advocate because that's where sort of I first came across you
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and your podcast about you being an advocate about additions and chronic illness and documenting
27:03
that via your Instagram page, because it's been going so is it about a
27:08
couple of years now or is it slightly less than that? You know,
27:12
I can't remember when I first started my Instagram page, but during the pandemic,
27:18
like everyone else, I'm just like, okay, you know, like
27:22
the one thing I didn't do was make bread like everybody else, but I
27:26
did. I did, like, you know, kind of like try like
27:30
anti inflammatory diet. So I tried to like, you know, document like
27:34
different foods I would make for that and everything, because that's when a lot
27:38
more of my chronic illnesses had popped up. Was actually right before COVID hit
27:45
the US, and that's a that's another story. So through the anti inflammatory
27:51
diet, because I love cooking, I'm like, okay, let me.
27:53
You know, the pictures aren't high quality, but I don't want to show
27:56
different recipes and stuff like that. And and actually, just within the last
28:02
few months, my Instagram has really taken off because I had connected with somebody
28:07
named Emmanuel Sessignon who has a nonprofit called w Triple A, which is Workers
28:14
with Sorry I always see this wrong, and I'm really bad at this because
28:18
I'm the director of awareness for it. But it's Workers with Autoimmune Ailments Alliance
28:26
and we're turning it into something called auto Aware. And it's where he too
28:33
was kind of wronged by our system. He was wrongfully terminated due to an
28:38
illness he had, and so he may he wanted to do something about it
28:42
again, we're you know, just connecting with all these positive people, and
28:47
so he created a nonprofit where he wants to do legislation where you know,
28:52
no employer can do that again to somebody, and we're it. We're an
28:59
accommodation to work from home is possible if somebody has a chronic illness. And
29:04
so one thing led to another, and on top of that, he wanted
29:07
to do a documentary that is the hope is eventually to show it to our
29:12
American Congress out here, to our legislatures, and it's called Invisible No More.
29:18
So apparently he was really like attracted to my Instagram handled chronically Gimberella,
29:26
which I can explain the ec on both startings that will finish like questions,
29:33
and he asked if I wanted to be a part of the documentary, And
29:37
of course, at first I'm like, okay, stranger nand er, like
29:40
what is this? Like you know, and so I had to investigate him
29:42
a little bit more and then I found out he was legit and and now
29:45
he's like a brother to me. So and after I did my interview for
29:52
it, he and I at the same time are like okay, so,
29:55
like how can I get involved? He's like, hey, would you like
29:56
to be our director of awareness, and I'm like, wait, like and
30:00
so right now, it's a grassroots thing and it's all volunteer. You know,
30:04
we're hoping to raise funds where eventually we can do this full time and
30:10
get paid for it so we can travel all over and just spread the word
30:15
and just you know, we want to do education and and everything like that.
30:18
But so I've really just you know, I also just decided that I'm
30:25
a part of a lot of support groups out there, but I wanted to
30:27
start my own support group, which I did on on Facebook and it's called
30:32
Spoony Warrior Chronic Coals, so it's Chronic Dash Coals. I'm going to change
30:38
the name because I think it needs to be changed. But it was just
30:42
a way to give people just a space to feel connected and to be able
30:47
to talk about whatever. And a lot of other support groups are very are
30:52
very limiting where they don't want you to market themselves and everything, and like
30:56
you and I have spoken like we're more than our illnesses rights. So I
31:00
want people to be able to say like, hey, I'm having this event
31:03
on you know Saturday, or hey, I just started this small business,
31:07
like you know, do you know anybody like that would like you know,
31:11
would be interested in this, Like I want people to be able to have
31:15
that space, so I want to stay. In the last few months,
31:18
I've just been more active and and through w TRIPLEA, I was able to
31:26
start this Chronic Convos podcast and so we're only about ten episodes in, but
31:32
it's just been so rewarding because we I've just gotten to meet so such amazing
31:38
people, like how you know, I like, I met you and then
31:41
just everyone and again I've met people in Australia, I met other people in
31:45
the UK, and then other parts of the States and then you know,
31:51
just all over the world. And again it doesn't matter where we're from,
31:53
we just all connect. And again, if we could realize that we have
31:59
a lot more common then we do differences, they just feel like the world
32:02
would be a better place and there wouldn't be so much hatred in the world.
32:07
And I know that's another soap box, you know, another episode that
32:10
I'm not going to get into, Like you know, that's why that's why
32:15
I love advocating. And to answer your question about chronically Gemburrella, so because
32:21
I got injured so many times and especially in high school, I was a
32:25
part of four competition choirs, which you had to audition for, and one
32:30
of them was a show choir, so that was kind of like a Broadway
32:34
musical where we're singing and dancing and acting all at the same time. So
32:39
one semester, this was my sophomore year, I had fractured my foot.
32:46
And I did this because I was trying to calm my my dog down,
32:52
who got really afraid of the rare thunderstorms we had got out here because it
32:55
doesn't rain a lot or and we don't have thunderstorms a lot out here,
33:00
and it was dark, and he pulled me in my parents' room and they
33:04
conveniently had a fan on the ground with the cord there, and I guess
33:08
apparently I tripped over it, and by the time I knew it, I
33:13
was staring up at the bottom of my foot. So my foot was basically
33:16
like this, but it hurt, but I didn't really realize I had done
33:22
anything to it until the next day, where I was wearing shoes, and
33:25
then all of a sudden, like midday, I called my mom and I'm
33:29
like, Mom, on my foot like really really hurts, and I don't
33:35
think I can really walk on it and turn up. It turned out I
33:37
had fractured my foot. So they gave me this this walking boot that I
33:43
swear I looked like a storm Trooper from Star Wars. It was a crazy
33:46
looking looking boot and I have pictures to show it too. But this was
33:52
right before a competition we had for choir. But you know, in my
33:55
head, I'm like, the show must go on. So I was able
33:59
to wait a different type of brace that kind of blended in with my costume.
34:06
But some of our our competitions were at like Disneyland or like Sea World
34:12
or things like that, and so I was in a wheelchair and so one
34:15
of my friends called me Gumberella because the next the next semester, I fractured
34:22
my or know, I partially tore my achilles tendon in the other leg.
34:28
And so she's just like you just trip over air and like you we we
34:32
need to put you in a bubble, and you're like you remind me of
34:35
a princess. But we're gonna call you Gumperella. And so the the the
34:40
name just always stuck, and I'm like, okay, I'm chronically Gampferrella,
34:45
you know, because you know why not, and then it was funny when
34:47
I was in a wheelchair, like at Disneyland. Of course all these people
34:51
who weren't my friends wanted to be my friends so we could get to the
34:53
to the beginning of the line, but you know, for the ride.
34:58
But yeah, it's like you guys like, go away, you're not my
35:00
front but uh yeah, so that's where it is. And I know I
35:05
haven't had any complaints, but I know historically like gimp isn't a PC term,
35:10
if you will, but yeah, but but for me, it was
35:16
a nickname that was given to me and it just kind of stuck, and
35:20
I feel like, why not take pride in it? Yeah, absolutely no,
35:24
it's that's a that's an excellent story because that was that was one of
35:28
the things I really wanted to ask. And I'm so glad that there is
35:30
an actual backstory behind. Yep, there is. I got it. I
35:35
got it to your tom. Yeah, thank you the big that said yeah,
35:38
no, I love that. I love that little listening to them things
35:40
like that that have backstories that rather than I mean, I didn't think of
35:45
a funny name for my podcast. It's just basically what it is. It's
35:50
tots podcast. It's who is it, what is it, and who is
35:54
it for? I've got really basic compete it right, Yeah, I'm really
36:00
basic in the marketing department. No expense spared, but no I And also
36:07
something something else that you said there about about being an advocate or to chronic
36:13
illness, and I wanted to pick up on something that was said on your
36:16
podcast. I believe it was the episodes five. It might have been the
36:21
episode one, but beat this episode five. I'm glad you know there's better
36:24
than me, because I don't remember which episode it was, but I appreciate
36:29
it. But it said that you you didn't want your illnesses to overshadow what
36:38
what you were doing that day or what you were doing that week. So
36:43
if you were going to a party or whatever, you would you you never
36:45
wanted to. I think it was in your words like make up fuss,
36:50
which I mean, considering you are going through all manners these, you'd have
36:54
been well within your rights to go. Actually I'm not feeling too well to
36:57
stay or whatever, but you're always have I need to power through this,
37:00
and I need to I need to do this that the other. But have
37:05
you always been like that with everything in life? Uh? Yeah, I
37:10
want to say I've always been a pretty tenacious person, even when I'm bullied,
37:16
because I was bullied growing up, you know, or put down.
37:22
I was even a part of an organization when I first started getting really sick
37:27
with some of my other major conditions that I have, I was told that
37:32
I was making it up and that I was just looking for sympathy because they
37:37
had to miss out on a lot of events because I was so sick.
37:40
It wasn't by choice, but like I was actually in the hospital or like,
37:44
you know, I was on medications where I made it imviscible to travel
37:47
or to drive, and it hurts. But I've always been like, you
37:52
know what, I'm going to show up anyway. I'm going to show that
37:57
even though I really am affected by what I said, because you know,
38:00
I'm a sensitive person. I wear my heart on my sleeve. I want
38:04
to say I'm a good person, and I would never do that to somebody.
38:07
But I'm going to show up, you know, I was. I
38:10
joined this organization for a reason, you know. But same with like like
38:15
family events, I really don't want to miss out. These are chronic illnesses,
38:20
and with some of my illnesses, I have there is going to be
38:23
a time where it's gonna be harder to go to things, whether I want
38:28
to go to them or not, because especially like I have a spinal condition,
38:31
it's a degenerative condition, and I don't know when all of a sudden
38:37
it's gonna decide. Hey, you know you had these plans, but this
38:40
is what you're doing instead. So yeah, I've just always been that type
38:46
of person. What I've learned to do, and especially with my family and
38:52
friends, is if I'm at a party or something, I've learned to try
38:55
to pace myself or i'm be or you know, I'll ask them ahead of
39:00
time, like hey, can I bring a pillow because I know I'm gonna
39:02
need to sit down? Or if I'm like helping cook for like you know,
39:07
Thanksgiving or for you know, a holiday dinner or something like that,
39:13
I'll be like, hey, I need a chair at the stove, or
39:15
like I try to accommodate that way, because you know, with fibromyalgia two,
39:21
it's something I forgot to mention and that the two don't always come hand
39:24
in hand. But it's very common to also have chronic fatigue syndrome, where
39:30
the fatigue is so great, and like people are like, oh, I'm
39:32
tired, I didn't sleep well last night. Now, this is fatigue where
39:37
it literally feels you have not slept in like weeks, Like it is like
39:42
your muscle's hurt. It feels like you had like the like the hardest workout
39:45
you've ever had, times that you haven't slept in days like it. It's
39:50
bad. And so sometimes it's like the fatigue is worse than the pain because
39:55
I can take medications to try to manage the pain, but what can you
40:00
do besides drink coffee which doesn't really help or for fatigue. Right, So,
40:07
but yeah, I've had friends and families say, well, we sometimes
40:10
forget you're sick because you don't talk about it, and it's like, well,
40:14
I don't want that to be the highlight. Like we're here to celebrate
40:17
somebody's birthday, and like, if you ask me questions, I'll talk about
40:22
it, but you know, and I'll let you know, like, hey,
40:23
if I'm sitting on a pillow, yeah, my back hurt, like,
40:27
but I'm not gonna make that the highlight. Yeah, But yeah,
40:30
I guess I guess I've just always been that way. I've always been that
40:36
person where you don't want it to be about me, and I'm learning that
40:39
it's okay to make it a little bit more about me, but I've always
40:44
like, well that's selfish if I we get more about me. I actually
40:47
had my voice coach, and you're gonna be the first person I'm sharing this
40:52
with. You know, I've been going through some other like interpersonal things lately,
40:59
and she said, you know, you're such a great person, but
41:01
it's like, you apologize for taking up space, and that's really stuck with
41:07
me. And so I guess I've been that person all along, and I'm
41:12
starting not to apologize for taking up space, but I still will not be
41:16
that person that'll be like, hey, like I feel like you know,
41:20
I feel horrible, but here I am. I mean, I may say
41:22
that to somebody, but again, I'm not going to make that the highlight
41:29
of the day because I don't want to miss out because again, I don't
41:32
know when my conditions are going to change, and they're gonna make it harder
41:37
where I will have to miss out on events and stuff like that. And
41:40
so when I'm getting ready, I will literally start getting ready like six hours
41:45
in advance, because I know I have to take a lot of breaks to
41:49
get ready, and I hate it, but it is you know, it
41:52
is what it is. So yeah, yeah, no, thank you so
41:57
much for sharing that. Thanks cute. It's and I think it is so
42:01
important. I know I said probably exactly the same thing on your show,
42:07
but well it just show us up for a line, right, It's okay?
42:09
Yeah, but how you don't want it to define you? How it
42:14
Yes, it's part of you. Yes it's difficult, but it doesn't define
42:19
who are as we we mentioned right at the very beginning when I did my
42:23
my intro view that was pretty much just ripped straight from your Instagram page.
42:29
Really has done that more maybe before, So I didn't. I didn't do
42:36
any extra work, but that I just ripped it, just copy and paste,
42:39
because how you know, how you are Broadway singer, how you are
42:43
an advocate? How also says dog mum there, which I love because dogs
42:47
that I have a dog as well, And yeah, I love dolls,
42:52
So anybody who loves dogs is very welcome on this show. But yeah,
42:57
I'm just kidding. But how you do so much? And then sort of
43:04
the chronic illness sort comes in and yes, it's it's part of you and
43:07
be part of you like the same way it be part of always be parts
43:09
of me. But I love the fact that it doesn't define you. And
43:15
it's again, and I know we're sort of treading old ground in terms of
43:20
what I've said to you previously, but I I love the fact that you
43:27
know, people can achieve so much with having so much sort of not wrong
43:34
with them as such, but kind of so many of these other conditions.
43:37
And I love that. I love the fact that you know, I get
43:43
you. You've interviewed some great people. I've interviewed some great people have done
43:46
some extraordinary things with chronic conditions, and I love that for you as well,
43:53
And sort of yeah, no, I think that's fantastic. And I
44:00
the quote that you said about it taking up space. Yeah, if you
44:07
don't work on yourself, then it's very difficult for you to help other people
44:15
as well, which which I think is something that's always stuck with me because
44:19
I'm very much the same I look at really helping other people and thinking,
44:22
right, I really want to help this person, help this person, help
44:25
this person. But actually, if I'm not fit enough to do that,
44:30
I can't be in the best space help them, and that took me years
44:37
to work out, and somebody had to say that to me. Yeah,
44:40
I don't know. Was that sort of the same for you as well?
44:45
Oh for sure? And I learned that actually when I was interning for my
44:50
master's degree, that if I don't take care of myself, I can't Like
44:57
how am I going to take care of others? Like how are you to
45:00
do it? Like if you're sick, like you can't really take care of
45:02
others. And I learned that because this might be morbid. But when I
45:07
was working in patient, I was working at an in patient psychiatric hospital from
45:12
my internship and a lot of patients that were coming in were former helping professionals
45:16
or just former professionals in general who didn't get the help that they needed,
45:22
so they got burned out really quickly. And that scared me straight. And
45:25
like when I talk to my supervisor about that, I'm like, so how
45:30
do you prevent that? They're like, you get help, you realize when
45:31
you're burned out, and you realize when you need to take a break.
45:35
And that scared me straight. I'm like, that'll never be me. And
45:37
if I can do anything in this world, I'm going to let everybody know
45:43
in the professional setting, like make sure you have to take care of yourself,
45:46
just like with our pets. How are we going to take care of
45:49
our dogs if we're like really sick ourselves and I'm not talking about a cold,
45:52
Like if we just like let ourselves go hel can we take care of
45:57
our dogs? You know, it's it's kind of the same thing, and
46:00
so yeah, it did take me a long time to realize that. And
46:07
you know, in the taking up space part, it kind of goes a
46:09
little bit deeper. And again that would be another conversation for another day,
46:14
not that I don't want to get into it, but you know, it's
46:16
just always been a confidence thing from being told like you're not good enough,
46:21
you're not pretty enough, you're not any of these things for such a long
46:24
time. You know, That's where that piece stems from. But you know,
46:30
yeah, being given all these conditions, I'm like, yeah, I
46:35
have all these but I can't let them define me, Like how am I
46:38
gonna enjoy life? And again, like it keeps saying, I know there
46:42
was some reason that this hand was dealt to me. I haven't quite figured
46:45
it out yet, but I'm going to go to brunch with my girlfriends.
46:50
I'm gonna go find out what that new place down the street is. I'm
46:53
gonna go explore that farmer's market or something like that, you know. And
47:00
I would love to travel, And yeah, it's gonna be exhausting and I'm
47:04
probably gonna be in some pain, but it's gonna be worth it, you
47:07
know. So it's just kind of you have to pace yourself. And I'm
47:13
not a light traveler because I have to pack so many what if you know,
47:16
accessories like heating pads and and you can't see it, but I've been
47:21
sitting on two heating pads and a pillow this whole time, because you know,
47:24
it sometimes hurts to sit up for a long time, but I do
47:30
it because you know it is and and also it's funny too. I don't
47:35
know if you've ever been asked this, So for people who have like chronic
47:37
pain issues, there's always a chronic pain scale, so like one to ten,
47:43
or if you've seen those faces. I don't know if they have that
47:45
in the UK where it's like a sad face and like a mad face or
47:49
whatever, like in the hospital, which I think is a very inaccurate to
47:52
shit, oh what pain really looks like. And there's always this misconception too,
47:58
where oh, if you're if you're oh you're laughing, right, yah,
48:01
yeah, yeah, there's always like, well, oh, if your
48:08
blood pressure is high, then you're in a lot of paint. For me,
48:10
I'm just as cool as a cucumber. So I can be at a
48:15
level like twenty pain and my my blood pressure is gonna be fine. So
48:19
that's a misconception. But like right now, I'm probably at a pain level
48:23
of a sixth, which is functional for me. You know, I can
48:29
also function at a pain level of seven. You and I were talking.
48:31
You can't remember if it was on my podcast or yours. Wait, we
48:36
have very high pain levels, you know. When it starts getting over a
48:42
seven, that's where it's like, Okay, I need to stay in bed,
48:45
I need to be on my heating pads, I need a dark room.
48:46
Maybe I'll put some Netflix on, like whatever the case may be.
48:51
I can't remember the last time I was at like a one hour two or
48:54
three. Maybe of four I've been at maybe, but I can't really remember
49:02
that. It's so like normally I'm like out of five, and I would
49:07
just learn to accept it, and like you said, I'd just really learned
49:10
to be in tune with my body, which a few weeks ago was super
49:14
helpful when I was hospitalized because I was told by one doctor I had to
49:19
go to the emergency room twice, and the first time I went, I
49:22
was told I was having an anxiety attack because of my five heart rate,
49:25
which I was asking you about your tac a cardia. I have a history
49:30
of sinus tach acardia. So after having a really bad lung infection in twenty
49:35
twenty, whatever reason, it's not because I get excited, but just whatever
49:39
reason, sometimes my heart rate just goes way up to the one thirties or
49:44
one fifties for no absolute reason, and it's just something I've gotten used to.
49:49
And it was going all over the place. But I also had numbness
49:52
on my right side, and I was told that was anxiety, and I
49:57
said, you know what, I this is not anxiety, and they're like,
50:00
it is, and I'm like, no, it's not. Like and
50:02
it's not that I have a problem with people who have anxiety, but I'm
50:07
also a social worker who works in the emergency room. This is not anxiety,
50:12
And like they didn't want to listen, and that was very painful because
50:15
I felt horrible, and yet you know, they gave me like an adavan
50:19
and that they expected me to be okay. And then you know, two
50:22
days later, I had to call an ambulance for the first time ever on
50:27
myself. Usually I am, you know, setting that up for other people.
50:31
So and then again that's another story for another day. But that's just
50:37
how you have to be an advocate for yourself. And even though she didn't
50:40
end up listening, it's just like I know my body and don't tell me
50:45
that I don't. You know, yeah, absolutely for sure, I'll pick
50:47
up on the other thing. I know, we talked about it on your
50:52
show, the pain threshold and and having multiple surgeries. I found, and
51:00
I think you've said as well, you've found that having through those having those
51:05
multiple surgeries, that you've ended up with a ridiculously high pain threshold and how
51:10
it takes so much so you're a light on the scale of one to ten.
51:15
Your four might be somebody else's ten, or your six might be somebody
51:21
else's fifteen, you know, and those this sort of what out of ten
51:24
scale, So if there's any benefits to crowd a kill this. I like
51:30
to see that as what in the fact that it takes, yeah, an
51:34
awful lot for someone to hurt me, and I'd imagine it's the same for
51:37
you as well. Yeah, And I don't know if you have this in
51:42
the UK. So we have an opioid epidemic here in the US, and
51:47
unfortunately it affects us with chronic illness. So most of my surgeries that are
51:53
normally outpatient have turned to impatience. So I'm normally hospitalized, and I'm normally
52:00
hospitalized because again my heart rate decides to go up to the one fifties also
52:05
due to another illness I have, which is rain ons, which is a
52:08
circulatory thing. That's when I don't know if you're familiar with it, where
52:12
it turns like your your extremities, your fingers, your toes, different colors,
52:16
purples, blues, reds. It's really pretty, but you know,
52:20
not pretty during the I that it's happening. So normally due to the surgery,
52:25
that's what triggers it. So that triggers the rain ons, which then
52:29
triggers the sciinus tack acardia, which then you know, I'm a hot myth.
52:32
But for like the last few surgeries I've had, I've had to be
52:36
hospitalized for six days, mainly because my heart rate doesn't want to go back
52:38
down, but also due to pain control. Like nothing they give me works
52:45
for my pain. And then they're like, well, you know, we'll
52:46
give you a tie lenyl. I'm like, if you give me a tie
52:50
lenl, that's like a tic tack and this isn't me pain pain medication seeking,
52:54
you know, because I know what that is again working in Yeah,
52:58
you a benefit, but it's interesting that certain people on the healthcare system just
53:04
aren't willing to go for that, even with the doctor's order. Like for
53:07
me, even morphine didn't help me, Like we had to go all the
53:12
way to dilaud it, which you know, you can give it, you
53:16
can prescribe it orally, but it's like really really rare for a doctor to
53:22
do that. So I was I was. I was given pergoset, which,
53:28
again that doesn't really do much. And again it's not because I've formed
53:32
an addiction. It's because our pain levels are so high and we've been we've
53:37
had so many surgeries that it doesn't work anymore. But unfortunately, with the
53:44
opioid epidemic here, it's made it really hard for people who actually need pain
53:49
medications to receive those. But at the same time, it kind of makes
53:54
me upset because I've had so many patients that I've worked with as a social
53:58
worker who like get prescriptions for like eighty percoset and it's like, I can't
54:01
even get a prescription for ten and I just had like a knee searger,
54:06
like so like how does that an art? But you know, so it's
54:08
kind of like this double edged sword, and I hope they find uh a
54:15
better way to address that because you know, sometimes I just won't take anything
54:20
then, like I'll just be in peen and like it sucks, but it's
54:22
like what are what are you going to do? Like I can't take my
54:24
last percoset because then I'm not going to have any Like it's just you know,
54:30
it's yeah, it's kind of this vicious cycle. Unfortunately. Something definitely
54:35
no I thank you thank you again for sharing all of that info, because
54:38
I think it's it's opened my eyes a lot too, saying there's a link
54:44
between Reynald and tapicardia, which which definitely and again I just something too important
54:52
to point out is not medical advice or anything like that. Please don't take
54:55
well to say no, no, no, no, I'm not even city
54:59
you know, right, this is just my experience and what i've yea and
55:02
what I've dealt with professionally as well as a patient. Yes, please don't
55:07
take this as medical advice. The only advice I'm giving you is advocate for
55:10
yourself. And I feel like anybody can give that bad advice. So yeah,
55:15
please please don't. Please don't think like, hey, yeah, go
55:19
go take this. I have no idea. I'm not a I'm not a
55:22
doctor or no. No, and even and even if you were, yeah,
55:28
I've been to me. Yeah, I still put it medical advice over
55:32
a podcast. No, no, no, exactly, no, no,
55:37
not not even going there. No, it's one of the first things I
55:39
did actually was right to disclaimer. It's been very very useful, very useful.
55:45
But yes, as we sort of wrap up towards the end here,
55:50
I'd like to just get your take on what does the future look like for
55:54
you. It's talks a lot about the past and and sort of past history
55:59
and and lots of incredible things that you've done and your work as a social
56:04
worker, and what do you think looked, what did your feature look like?
56:08
Do you think the next few years, well, do we get to
56:14
win the lottery in this that's your scenario. I do what you want,
56:22
right, Okay, I'm just kidding. And as you've seen, I've also
56:25
not only have I like made it not about myself, I've learned to really
56:30
develop a sense of humor with a lot of this. And some people might
56:34
think of it as like I'm deflecting, but I feel like you have to
56:38
like see the humor in this. Like I've had a hip replacement and I've
56:43
had a knee replacement, and I'm only thirty five, and so I'm like,
56:45
Okay, I'm turning into the bionic woman, and it really can't wait.
56:50
I haven't I haven't traveled yet, like through the airport. So I'm
56:52
like really looking forward to seeing if I set it off because before that,
56:58
for whatever reason, I'd always set the metal detector off. I have no
57:04
idea why, So I'm like really looking forward to that. So what does
57:10
my future look like? That's kind of a tough question. So the bleak
57:16
part of it, if you will, is I've already been told there's at
57:21
least four more surgeries that I'm gonna need in the future. I'm gonna need
57:24
my other knee replaced, and I'm gonna need my other hip replaced eventually,
57:29
and then with me replacements as long as I don't fall on everything is great.
57:34
You do need them replaced every ten years just because of where they're located.
57:37
Hip replacements, unless I break it, that's good for life. My
57:43
spinal condition is very questionable, so that might require multiple surgeries. I just
57:50
don't know when. But without focusing on that part and really hoping that I'm
57:58
done getting diagnosed with things, because just five weeks ago I was diagnosed with
58:01
Crohn's disease. So with without that, I'm really hoping my podcast and just
58:08
in general, I can connect with as many people as possible in the community
58:14
and just really spread awareness and you know, we can just really create something
58:20
great. I've noticed with chrones that there's not a lot of cookbooks out there,
58:25
so maybe doing something yeah, I know, right, it's really it's
58:30
really shocking, So maybe doing something along those lines. You know, I've
58:37
missed singing, so I've gotten back into performing and doing voice lessons, So
58:44
doing something like that, I would love to have kids However, with this
58:47
genetic lottery that I was given, I'd hate myself if any of this was
58:54
like given to my kids. So I don't know biologic is the is the
59:00
answer, but you know, I'm open to adoption, and you know that's
59:07
definitely something I'm looking forward to in the future once once everything calms down.
59:14
I just started a new medication from my prone so once I know if that's
59:17
working or not, I'll be able to do that. Next step. I'm
59:22
working on my licensure for social work, so I can be like a licensed
59:28
therapist, if you will, because I'm a few roots out from that.
59:30
Yeah, thank you. So I don't know doing something like that. And
59:36
then I really hope the organization I'm a part of that made this podcast possible
59:40
w Triple A will just really take off and we can just travel all over
59:45
the Nition and maybe even all over the world, just you know, trying
59:50
to get rights for people with chronic illnesses. So I just want to be
59:54
an advocate in one way or the other and travel and set up off TSA
1:00:00
as much as I can, and uh and stuff like that, and then
1:00:06
again, just have fun. No matter what my future looks like, I
1:00:09
just want to have fun and live life to the fullest for as long as
1:00:15
I can. And again, even when I'm given something that kind of makes
1:00:21
that a little bit impossible, if you will, still I'll still find a
1:00:24
way. I know I will. I'm not one of those that's going to
1:00:28
give up and just like give into whatever I've been diagnosed with. So I'm
1:00:34
excited. And and this is a joke from my podcast, but tom next
1:00:40
next Cricket World Cup that's in the US, I'll make sure to know about
1:00:45
it and to tell you about it, or you'll probably tell me about it,
1:00:49
So that's a goal as well. Still, I can't believe I had
1:00:54
no idea. That's that's freazy to me. But yeah, and then another
1:01:00
thing too, And again it's might sounds stranger dander, but like some of
1:01:05
the people I've met who I feel like we're like kindred spirits like you,
1:01:08
like I hope we can cross paths one day, like all meet at a
1:01:12
summit or something, you know, just just somehow like connect and just again,
1:01:17
it just doesn't feel as isolating that way. So that's what I that's
1:01:22
what I hope. And you're one of the first people who's kind of asked
1:01:25
that question, so thank you for that probably And I just just finally,
1:01:31
where can people find you find your story? Oh? Yeah, so you
1:01:37
can find me on Instagram at Chronically Gimberella, So that's Chronically and then g
1:01:45
I M P E R E L l A. I also have another Instagram
1:01:52
for my podcast, which is Chronic Dot Convote. But you can also find
1:01:58
us on YouTube as well as Spotify, and it's a green little circle or
1:02:02
square with a golden arch with Ashley at Kovic my name over a golden mic.
1:02:08
So and if you can just like and subscribe, that would be awesome.
1:02:12
Really, I'm just trying to to get as many subscribers and likes as
1:02:19
possible and I will have a TikTok and just I need to figure stuff out
1:02:23
and be more tech savvy. But uh yeah, that's where you can find
1:02:28
us. And if you're all so interested in the W Triple A organization that
1:02:32
I'm a part of, you can there. They also have their their own
1:02:38
instagram, so but you can find that on my Instagram and it'll lead you
1:02:42
to fantastic. Thank you very much, well, I wish you the best
1:02:45
of lot with the W Triple A, the Chronic could bows and everything you're
1:02:51
doing as well. It's been a pleasure to talk Tie. Thank you so
1:02:53
much for coming on. I'm so honored to have been on here, so
1:02:58
thank you so much and best of talk to you and everything that you're doing
1:03:00
as well. By pleasure, Thank you. Thank you for listening to the
1:03:07
podcast. Find us on Instagram Tom's Underscore Hirshbrun's Underscore podcast. Listen to previous
1:03:15
episodes on Spotify by searching Tom's Hirshbrun's Podcast