Bad Medicine with Casey Greer & Cassandra Mendez of the Rare with Flair podcast
Jennie Bovard:
Welcome to Low Vision Moments. It's the podcast all about those sometimes frustrating, potentially embarrassing, but often pretty comical things that happen when you are just going about your day with a visual impairment, blindness, or albinism. I'm Jennie Bovard, your host. And on this episode, number 32, we're likely going to get more personal than ever, and in a new way. And if you're a frequent listener/watcher, you might be thinking, "She gets pretty personal," but I assure that it's going to be TMI, too much information, for some people. You have been warned because it's not often that I share about my health and issues related to that, as well as the experiences with healthcare and hospitals and doctors that go along with all of that.
Let me tell you, when you're born with a rare genetic difference like albinism, and you've got other medical concerns going on throughout your life, you gather a lot of interesting experiences, and probably more experiences than the average person, I would say. So this time around, we're going to call this episode Bad Medicine. And unlike the Bon Jovi song, very catchy, bad medicine is not what I need. I don't think it's what any of us needs.
But here with me today to compare notes and give us perhaps an American perspective on their healthcare system versus our Canadian system here, which is not all it's cracked up to be, let me tell you what, but I'm so lucky to have these two hosts of the Rare with Flair Podcast, so fortunate to have the two of you here. Casey Greer and Cassandra Mendez, thank you so much for coming on the podcast.
Casey Greer:
Thanks for having us.
Cassandra Mendez:
Thank you so much for having us.
Jennie Bovard:
I would love if you could take a moment to tell us more about the Rare With Flair Podcast. I'm a big fan. I love listening. I feel like we're all buddies, and it's nice to come together, and that's the kind of weird thing that happens with podcasting. But for those who don't listen, tell us about it.
Cassandra Mendez:
Yeah, okay. So Rare With Flair was really just born out of Casey and my friendship together. So we met years ago at a Hermansky-Pudlak syndrome conference, and hit it off. I think that we were about five years apart in age, and so when we met, I was a teenager and she was in college. And so it felt a little bit more of an intimidating age gap, but we still were good friends for a while. And when we would talk, which was, I don't know, a few times a year, we would have these three-hour-long FaceTime calls that we crossed every type of topic, but mostly related to disability and having Hermansky-Pudlak syndrome, which we both have. And I don't know, in the pandemic, we were getting bored.
Jennie Bovard:
So you both do something really unique with this podcast, and I'm going to steal something from your website. I love a couple of things that you say on there. You're two best friends living your best rare lives, and I think that refers to the fact that Hermansky-Pudlak syndrome is a little rare, as with albinism, we're kind of rare. And you say that again on the website, I was trying to think of a way to put it into my own words, but you do it so well, I'm just going to steal it.
You say that you're sharing your lives to showcase the beauty and normalcy in disability and to have fun together, of course. And that just so rings true to me with what I want to try to do with this podcast, and I think you do such a lovely job at doing that showcasing piece and the normalcy piece because the more of us that are out there doing this kind of thing, the less mysterious it becomes, and normalizing is very powerful. So thank you for what you do with the podcast. Casey, was there anything that you wanted to add there?
Casey Greer:
Oh, no. I think Cass covered it pretty well. We decided to name it Rare With Flair because we talk about the rare piece, which is our rare disease, Hermansky-Pudlak syndrome, but we also talk about the flair, which is our interest in fashion and music and other things like that. And so we really wanted to hit on both of those things to show the normalcy, like you were saying. So yeah, no, we have a lot of fun.
Jennie Bovard:
It is a lot of fun, and something else that you do is you cover a wide range of topics. It's not all about albinism. It's not all about disability. It's your lives, and in a really fun way, there's always something that's kind of relatable. I really enjoyed your recent episode about how to annoy the two of you. And I can't believe you didn't mention littering. I was kind of offended, but that's a whole other conversation.
But before we move on and get into some fun low vision moments, to some bad medicine, can you tell us a little bit more about Hermansky-Pudlak syndrome? Because we have touched on albinism on this podcast. We have touched on a lot of different things, oculocutaneous albinism, ocular albinism, but we haven't touched on Hermansky-Pudlak syndrome. So could you give us a little bit of a rundown and help us understand a little bit better?
Casey Greer:
Sure. So Hermansky-Pudlak syndrome is a rare disorder and it causes albinism and visual impairment, as you know, but it also causes a bleeding disorder, so our dense bodies in our blood are not formed properly, so they don't clot the right way, so we bleed easier and we bruise. And then in some certain subtypes, it can cause GI issues like Crohn's type symptoms, and it can cause pulmonary fibrosis, which is a fatal lung disease, and often has to be treated with lung transplants. And it can cause some other things too, but Cass, do you have anything? I think I covered most of it.
Cassandra Mendez:
I think you did it. I think the funny thing about having HPS is that it's so rare that we have this boxed description that we're so used to just handing out to every new doctor we see, so I think you did it.
Casey Greer:
Yeah, we have a script at this point pretty down pat of what it is.
Jennie Bovard:
It sounds like it's pretty complex, and without a doubt has an impact on your day-to-day. And I feel like I've called on the perfect people to come and sort of talk about the medical side of things because you've no doubt had some experiences over the years with that. And thank you for taking the time to explain and describe it. And I can't tell you how many times I've had to sort of explain to a doctor that I have albinism and what it is, and that always kind of shocks me. So that must be kind of exhausting that you have to do that all the time.
Cassandra Mendez:
It can be. I think the network does a good job of trying to empower us. The Hermansky-Pudlak Syndrome Network is the organization that kind of is our flagship. They help look for research opportunities for, I don't know, remedies, for cures, I don't know. They also put together conferences and things to prepare us as patients. And I think they do a great job of prepping us to advocate for ourselves. It's just something that is part of the nature of having a rare disease. And so one of the cute things that has been a mainstay because we lack the dense bodies in our blood platelets when you look at a regular blood platelet, we're getting scientific here, when you look at a regular blood platelet under an electron microscope, it has these little dots on it, which are those dense bodies that help your blood clot, and they look like chocolate chip cookies.
And then ours don't have those, and they look like sugar cookies. So a lot of times when we go to a new doctor, we bring them cookies maybe as a bribe, I don't know, like, "Please remember us."
Jennie Bovard:
That's amazing. Wow. Way to put a positive spin on the whole thing and bring cookies into it. I am sold. That is absolutely fantastic. Oh, my goodness. So let's get into these low vision bad medicine moments. In Low Vision Moments Podcast tradition, I'm going to kick things off, and I said at the beginning, we're coming in hot. We're coming in with definitely TMI, too much info for some people. But that's just how we just have to be transparent sometimes. Now not a lot of people know this about me, but in my early 20s, I had my first colonoscopy, and that's pretty young in the grand scheme of things, to have your first colonoscopy.
It was an interesting experience. I remember that they didn't give me quite enough of the medication to sort of knock you out, so I couldn't feel anything from the neck down, but from the neck up, I was very alive and aware and alert and inquisitive, and very annoying. I would not shut up, and I kept trying to have them explain to me what was on the screen. And before I go any further, I should explain with a colonoscopy is, so here we go. It's essentially a procedure where a camera on a flexible, bendy thing is inserted into your butt. And it's a way to check the health of our colon, our large intestine. And I think that's all you really need to know about the procedure.
There's a camera on the end of it, and so the specialist is able to look on a screen while the camera is inside of you and take a look around your insides. So I was seeing a lot of pink on the screen and not really understanding what I was looking at. And there was discussion amongst the team about, oh, they found something. So I was trying to get them to describe things, and the next thing I know, I'm pretty sure they pumped up the drugs and I passed out because they were like, "This one just won't shut up." So good news is they ... Good news, bad news, they found a few tumours in my intestine, but things turned out to be okay.
I just have to go on the regular to get colonoscopies to get things checked out. So now that you know about that, a recent followup appointment I had, I have really excellent, in my opinion, orientation and mobility skills. How do you both feel? Do you feel like you're sort of above and beyond the average person?
Cassandra Mendez:
I like to think so, but I think that's maybe my inflated ego.
Casey Greer:
I think we're both pretty well-versed and O and M.
Jennie Bovard:
I find myself ... So I go into ... There's a series of waiting rooms, and in the final sort of waiting room area before you go into the procedure, you're sitting in this little waiting room with a bunch of other people, half naked in your little hospital robes, and it's already kind of awkward. But I don't know why, but my mind does this, is I take a look around and I'm scoping out the room, and I'm picking up clues like the nurses station is over to my left. I can see them mulling around there. There's a curtain, interestingly, making up one of the walls of the waiting room. Okay, that's normal hospital kind of thing. They put dividers up all the time.
So I go in for the procedure, everything goes fine. I should note here there was a student in for the procedure, and I don't know if it's just me, but there always seems to be a student, and it makes me wonder. Am I an anomaly or were they just following the specialist that day? I don't know. Does that happen to you?
Casey Greer:
It has. I think a lot of times when we're around, the doctor wants to show anyone, wants to show us to anyone around, basically, to be like, "Wow, you're never going to see another person with albinism for a while, so here they are." Yeah, so I feel that for sure.
Cassandra Mendez:
I have this memory of going to a dermatologist I think when I was young. I was at a pediatric hospital. And I remember they asked, and I was with my mom, obviously, I remember they asked, "Hey, is it okay if we bring the students in?" My mom asked me, and I said, "Sure." And they left and I felt like a celebrity, no lie. I was like, "Wow, they want to take pictures of me. I'm so cool." My mom was telling me later, "They might put that in a textbook you know." It's like, "Oh."
Jennie Bovard:
Right. They might put that in a journal somewhere.
Casey Greer:
Yeah.
Jennie Bovard:
Let's run with the celebrity feeling. I like that. But I'm not sure what the case was in this case. The procedure went well. There was a student there. I hope they learned something. But where the real trouble came in this follow-up procedure was in the recovery room. And I don't know if anyone has experience in a GI area, a colonoscopy recovery room, but it's a musical place. Part of the procedure is, there's a bunch of air that's put into your body so that they can look around, so that they can look around your insides. And so when you're in this recovery area, part of it is not only are you coming down off of the medication, so you're able to walk out of there or whatever, but you're expelling the air that was pumped inside your body. So it's a very musical, very flatulent place.
And for some people, it's more of a big deal than others. I'm usually pretty ready to go after a few minutes. I'm like, "These drugs are out of my system. I got all the gas out. I'm good to go." So I had been musical myself, of course, and I'm laying in the bed. I'm feeling pretty good, thinking I'm about ready to go. One of the nurses comes in, pulls the curtain aside, checks on me. And it's a room full of other people who are recovering. We're separated by all these curtains, so she opens my curtain and asks me, "How are you doing?" We have our little exchange. I think I'm ready to go.
She's like, "You need a few more minutes." She doesn't know how alert I'm feeling. But anyway, I'm awake. And I notice as she's leaving that I can see the nurses' station. And I'm like, "Oh, okay. I know where I'm situated now in the room," because I had taken these notes before just naturally with all my orientation and mobility training throughout the years. And I'm like, "Okay, I notice the nurses' station over here." And I'm looking around, I'm very alert at this point. And I notice the curtain behind me is the same colour, the curtain that my behind is facing is the same colour as the curtain in the waiting room that was making up the waiting room wall.
So I'm lying there thinking, "Wait a minute. There's no way that this curtain that my behind is facing is also the curtain that makes up the wall in that little waiting room before you go in." And there were seats there, so there would've been people in there, their head level ... Their head would've been at the same level as the bed I was laying on. So I'm like, "Damn, these orientation skills. I did not need to know that I was serenading these poor people in the waiting room.
Cassandra Mendez:
Hey, they knew what they were in for.
Casey Greer:
I love the way you put it.
Jennie Bovard:
They didn't need that. No one needs that.
Casey Greer:
I love the way you describe it though is like a musical experience. At least we're making it sound like a more flowery thing than it is. You're serenading. You're just giving them a show. You're just serenading.
Jennie Bovard:
I felt embarrassed and terrible for the people who were sitting there because it legit ... Okay, it's kind of like tell me your healthcare system is overcrowded without telling me your healthcare system is overcrowded. You've got post-colonoscopy butts facing the poor waiting room people. I felt ... And to exit this place, I knew again because of my orienting myself that I had to walk by this waiting room to leave the place as well.
Cassandra Mendez:
It's like a human fish tank.
Jennie Bovard:
And all my instructors. Oh, my God. I felt really bad for those people. But shout out to all those instructors who taught me orientation and mobility. Usually, I think they're a blessing, but in this case, I think they were a curse. Have you ever been sort of cursed by maybe orientation skills, or any kind of awkward ... Can you match that? Basically is what I'm asking.
Casey Greer:
I think we both can. I think we both have a few. So I actually have told this story on our podcast before, but we don't have all the same listeners, and maybe people will want to hear it again if they have heard it before. So Cassandra and I, with having Hermansky-Pudlak syndrome, at the National Institutes of Health up in Maryland, they study HPS, so we are kind of test subjects and we voluntarily go there to try to ultimately help find a cure and get research done. There's this fun thing they do called the 24-hour urine jug.
Cassandra Mendez:
Oh, my God.
Jennie Bovard:
I remember this story.
Casey Greer:
It's essentially what it sounds like. It's a jug that you have to urinate in for 24 hours, but it's not as easy as it sounds because you are tethered to this jug for 24 hours. And also, you have to keep it on ice or it's going to essentially spoil and they won't be able to use it. But they don't really explain to you how to keep it on ice and what the best way of doing that is. So I'm sitting there, they were like, "Yeah, you just need to keep this on ice," then they kind of leave. And I'm like, "Well, don't know how to do that."
So Cassandra had been more recently than I had been there, so I'm sitting on the floor of this hospital about to cry, just really frustrated. I call up Cassandra. I'm like, "How do I keep this on ice? What am I supposed to do?" She says, "Okay, don't worry. I got you." There's a lounge that we stay at as patients. And she's like, "At the lounge, [inaudible 00:19:25]."
Jennie Bovard:
She said a lounge, you said a lounge.
Casey Greer:
It's not a lounge. It's lodge. We always joke.
Jennie Bovard:
That's a weird fucking lounge.
Casey Greer:
It's called the Zephyr Lodge, but we joke that it's the Zephyr Lounge, and now apparently I'm calling it a lounge.
Cassandra Mendez:
We like to romanticize this place where we're test subjects and think that we're at a hotel bar or something.
Jennie Bovard:
It's a retreat.
Casey Greer:
Right. It's in fact not. It's in fact not. But she was like, "I got you. Fill it up at the lodge," not lounge. And I was like, "Cool. Great. Love that." So I have this bucket with my urine jug. I know this is so TMI. But I go to fill up the ice in there, and of course, the ice machine is broken. So I'm standing there at literally 11:00 at night, the ice machine is broken. I have a urine jug. This is at a public area, people walking around. And so my mom was with me, my mom and I are really close and she comes with me for moral support because this is a lot to deal with. Even though I could go at it alone, she's very kind to support me.
So anyway, we're rummaging around this kitchen, this public kitchen to try to find anything. And we did end up in the freezer finding these ice packs that we were able to use for the jug. When those moments happen, I kind of just have to sit there and be like, "What is my life and why?"
Jennie Bovard:
I've got to get these piss jugs on ice.
Cassandra Mendez:
And the fact that I knew exactly what she was talking about when she calls me and she's like, "How do I keep this on ice? I have appointments tomorrow. This is really important."
Casey Greer:
Yeah. I was like, "Who else can I ... What kind of conversation are we even having right now?" Most friends talk about normal things, and here I am calling up my friend in a panic about this urine jug on ice.
Jennie Bovard:
But thank God you had someone to call because-
Casey Greer:
Thank you.
Jennie Bovard:
I feel like that sounds like a real logistical nightmare.
Cassandra Mendez:
It was.
Jennie Bovard:
And before I go on, piss jugs on ice, it just sounds like the most ... I know that in your podcast, you made a joke that it sounded like Disney on Ice. Speaking of piss, I nearly pissed my pants laughing. It's still very funny.
Casey Greer:
That was Cass's joke. Cass gets the credit for that one. That was a good one.
Cassandra Mendez:
I can't un-hear it. I can't.
Casey Greer:
Now we just hear it. Disney on Ice, piss on ice.
Jennie Bovard:
Disney on Ice will never have the same ring for either of you anymore.
Casey Greer:
It's tarnished.
Jennie Bovard:
I must say it sounds like a very East Coast Canadian thing, piss jugs on ice. I'm just going to leave that statement there. People who get it will get it. But it sounds like a real logistical nightmare.
Casey Greer:
Sure was.
Jennie Bovard:
Do they not refer you to a website or a forum of instructions? Here's how to keep ... What do you ...
Cassandra Mendez:
As if they have instructions.
Jennie Bovard:
You shouldn't have to phone your friend and be like, "Yo, how do I ... "
Cassandra Mendez:
It's just bizarre. They do amazing work and we're happy to go there and be part of the research. I want to get that out of the way so it doesn't sound like I'm complaining. But at the same time, it's run by the government of the US, so people perpetually don't know what they're doing there. It feels like they're trapped in another space where they don't know how they ended up there and every day is their first day at work. That's how it feels talking to anyone except the core team that focuses on Hermansky-Pudlak syndrome because you'll go somewhere with instructions and they kind of look at you and shrug like, "I don't know where you heard that from. I don't have your orders for a CT scan. You're just going to sit here for an hour."
Casey Greer:
It's true, it's true. And we're so grateful for what they do, like she said. And we're grateful to do it. And they've made a lot of progress with research, but sometimes you just have to laugh and be like, "This is not working out."
Cassandra Mendez:
It's so funny.
Casey Greer:
Yeah.
Jennie Bovard:
And I think it just goes to show that no system, no organization is perfect, and even when they mean really well. Sometimes shit just happens. One hand doesn't necessarily know what the other is doing, and the collaboration maybe just isn't there. But yo, someone's got to do up an instruction sheet, tips and tricks for how to keep your piss jug on ice.
Cassandra Mendez:
Your piss jug on ice.
Jennie Bovard:
I can't even fathom. I can't even fathom the logistics. Oh, my goodness. I think you might've topped.
Casey Greer:
I don't know. I think Cass could probably top.
Cassandra Mendez:
I think the thing that helps me be able to top this is that my life is consistent shit jokes because as part of Hermansky-Pudlak syndrome, I was diagnosed with colitis over 10 years ago now. And when I was around 18, I got my colon removed because bleeding disorder plus sick intestines makes for life-threatening bleeding situations. And so I have been without a colon for over eight years now. So it's hilarious because yes, I just have my shit on my person. I carry it on me at all times. So I've had relatively few ... I mean, just compared to other people with ostomies that I know, I've had relatively few situations, but it's impossible to have none.
And it's just this constant enjoyment out of everything that it entails. So I mean, I was at the airport recently, and I have a guide dog, so normally when I'm at the airport, I go through the metal detector and I don't have to go through the little body scanner thing that's at the airport in the US. So anyway, because I was travelling internationally, I didn't have my guide dog with me, and I had to go through the body scanner. And I forget that every single time I go through the body scanner, they see there's something special up there. What are you stashing in your front? I need to know. And so I'll walk out and they're like, "So can I just give you a little rub?" It feels very consensual.
Jennie Bovard:
Do they say it like that. Can I give you a little rub? I've never had anyone in the airport talk to me like that.
Cassandra Mendez:
They're really nervous about it because it's close to my crotch. And so that's why they have to ... They're kind of nervous about asking. They're like, "Can I pat? Is it okay if I pat down this area?" And then I usually disclose and I'm like, "Sure, yeah. I have an ostomy bag," just so that they know because if not, they will totally interrogate me. But on my way back, I had not gone to the bathroom recently. I was on a seven-hour flight, and when ... It gets full. So I have a bulge on me because I have to go. And this woman's really trying to approach with caution. And she's, "So, what? What?" And I was like, "Oh, I've got an ostomy bag."
And she was like, "Is it okay if I pat down the area?" I was like, "Sure. I mean, I'd approach with caution because I haven't gone to the bathroom in a minute." She kind of rubs it, and I can just hear the ...
Casey Greer:
Oh, no.
Cassandra Mendez:
And she's just caressing my bag full of shit.
Casey Greer:
That's a sentence you don't hear every day.
Jennie Bovard:
That's a T-shirt, caressing my bag full of shit.
Cassandra Mendez:
They make me rub it, and then they test my hands to make sure I didn't put drugs in there.
Jennie Bovard:
What? What? Really?
Cassandra Mendez:
It was fine, but yeah, they test my hands. Yeah, so if you ever want to stash drugs, I guess an ostomy bag [inaudible 00:27:45].
Casey Greer:
The full story is you have to get your colon removed just so you can bring drugs on an airplane, got it. You've got to be complicated.
Cassandra Mendez:
It's really thinking. You know?
Jennie Bovard:
That's a level of commitment. I don't know a lot of people have that. I thought going through security was a pain in the ass, but you don't think of these things as someone that doesn't have that lived experience or any close relationships with anyone that has had that experience. Does that happen often when you travel? And is it an issue?
Cassandra Mendez:
Because I mostly go through the metal detector, it's not.
Jennie Bovard:
Right. You mentioned that.
Cassandra Mendez:
No, you're good. And no one can really see it unless it's very full and you know what you're looking for. So I say that and it's generally are discreet, it's just when they look through the body scanner, they can see a more concentrated blob of something, and so then they have to ask about it, which makes sense. Want to be secure. But they told me when I got an ostomy, "Hey, you may need to tell people at the airport," which I thought was absolutely bizarre, but it does happen.
Jennie Bovard:
I need to ask. How did that person end that interaction with you? Do you remember?
Cassandra Mendez:
I think she was kind of ready to move on. She was nice about it. She was like, "Oh, okay." I don't know if this was her first time knowing this, but I was just like, "Okay, bye. Have a nice time."
Casey Greer:
It does feel weirdly kind of intimate because it is lower abdomen.
Cassandra Mendez:
I don't know. The first time this happened on my way out, I had to also disclose, and that wasn't nearly as full. But the poor woman, I had to ... I have lots of issues and so I had to stash my cane in the conveyor so they could X-ray the cane. And then I'm telling them that I have an ostomy and they're like, "Oh, man. You poor tragic child."
Casey Greer:
Yeah, you're going through a lot.
Cassandra Mendez:
TSA knows way more about me than some of my friends.
Jennie Bovard:
I can't put myself in either person's position right now. Yeah, I don't know. I'm kind of speechless only because this is a totally new thing to me to try and fathom. And I think it is for a lot of people. But it's a very real thing for a lot of people and I think you're awesome for being so positive about it because it would be ... You could be easily annoyed by having to do all of these things. And instead, you sort of take it with a grain of salt and you come here and tell us this hilarious story. And we come up with a T-shirt idea.
Cassandra Mendez:
I think that perspective and context matters a lot. I almost had no other choice but to get ostomy surgery. I really tried to exhaust all my options because they always would tell you that surgery's the last resort. And of course, I didn't set out to get my colon removed. I had no quality of life before this. For six months, I was reduced to almost nothing. I was in constant pain. And so when I see the before and after when I got surgery, I mean, my life significantly improved to the point where ... I was left really traumatized by everything that happened before, so this was a vast and far improvement.
And so I'm so happy with the quality of life I have. Not everyone has the same experience that leads up to ostomy surgery, so people have different feelings about it. But I mean, it saved my life. Her name is Celeste.
Jennie Bovard:
Oh, she's got a name.
Cassandra Mendez:
Yeah, yeah. A lot of people name their stomas. And my thought process was hey, if I'm getting a new thing, I have to learn to love it. And if I want to love it, it has to have a name. So I name her Celeste because she came from above to save me. It's really just funny sometimes. You ever just shit in a corn maze? Because I have. And because I'm basically incontinent, I'll leave it at this. I don't have any control over it. I can constantly make the joke that I'm always taking a shit at any given point, no matter what's going on.
Jennie Bovard:
Perhaps even as we speak.
Cassandra Mendez:
Yes.
Jennie Bovard:
But you said something that kind of made me think of when I had these tumours removed in my 20s, before then, I had a lot of really shitty symptoms, and no joke intended. My quality of life was not great, and after I had them removed, it was like, "Okay, we know what's wrong and I'm starting to feel better," but also beyond that point, when it comes to really anything, it put things in perspective for me. Life's too short to get annoyed at these. What's the point of not going along with it? I'm not articulating this well, but just freaking go with it. If the person at the airport wants to scan my cane this time, or if they don't, whatever. It's an inconsistent experience. I could get mad about it or I could just go along with it and go on with my trip.
For me, it was more of a medical scare and just something that I need to keep tabs on. And for some people, it's part of your everyday life, a constant consideration. But I don't know, it helped me really put things into perspective. Life's too short to get pissed off and not have fun. And I think that was a big thing for me, so I feel like I can maybe relate a little bit. And I think people listening can probably relate as well.
Wow, we have gone down some roads I did not know we would go down. I thought that I talked about shit a lot, and piss jugs on ice, I just ... That is a gem. What we do need to make sure we cover is where people can go and find your podcast. I think it's on all the platforms. But how can they connect with you?
Casey Greer:
Yes. So our podcast is on anywhere you can find podcasts, also, our website, rarewithflair.com. And then we have Instagram and Facebook as well, Facebook at Rare With Flair, Instagram @rare.with.flair because Rare With Flair was taken, so add the dots if you want to find us there. And then our email, hello@rarewithflair.com. And yeah, you can connect with us that way.
Cassandra Mendez:
We put out episodes every other Tuesday. You can hear them on our website or any of the platforms of your choosing. And we love hearing from our listeners. I think you might be able to relate to this, Jennie, where podcasting is kind of a strange format sometimes because you don't get that instant feedback that you do if you, say, post a video on YouTube. There's no comment section for a podcast. So if you want to hear from people, they've got to reach out to you on DMs or email. So we do our best to reply to people that reach out, but don't be afraid to. We love hearing from people that enjoy the show.
Jennie Bovard:
The listeners are listening. I know what you mean. Sometimes you put something out there and you're like, "Are the people there? Are they listening? Do they care?" And they do. We are listening. I love what you both do with the podcast. I'm definitely going to keep listening. And also, I know that you're both very active in the albinism and HPS communities. You do a lot of advocacy work and you volunteer your time, and you do a lot of stuff there too, so thank you for all that you do there. It really makes a difference. And I think the more of us that are out here, as you say, describing your podcast, showcasing and showing the normalcy and the beauty in disability. And we're out here living amongst you is something that I say, we're all around you. You may not know it, but we're here. So thank you for all that you continue to do, and just stay awesome. And maybe one day you'll come back and we'll talk about something else. But this has been so much fun, I can't thank you enough for both being here.
Casey Greer:
Yeah. Well, thank you so much for having us. And like you said earlier, I think the more people who are doing these kinds of podcasts, the better. We've always said that. The more voices of people who albinism and other rare conditions, the better, and sharing all of our different perspectives, so we love the work you do as well, so thank you.
Cassandra Mendez:
Yeah.
Jennie Bovard:
Thank you. There's plenty of room.
Cassandra Mendez:
Yeah. It's awesome that we have several people with albinism that have podcasts, so you can hear interesting perspectives all around. I think each show has something different to offer, so highly recommend checking it out. And for any of our listeners that are on here, you should definitely listen to this show. It is so funny and you will be so happy that you did.
Jennie Bovard:
Oh, so much fun. And there's such beauty in the diversity that is within the albinism community itself. That's something that I've really come to appreciate with all the content that's out there, so woo-hoo. Casey and Cassandra actually celebrate Rare With Flair's three-year pod-iversary the day this episode drops. That seems pretty serendipitous. I feel like it was just meant to be. Having them as a guest has been truly awesome. And I'd just like to say a big congratulations to you two lovely human beings on that pod-iversary. We'd love to hear any suggestions or feedback that you have about this podcast, including any tips for keeping piss jugs on ice. Just send an email to podcast@ami.ca, or give us a call and leave a message at 1-866-509-4545. One more time, the phone number is 1-866-509-4545. Just make sure to mention Low Vision Moments in the message, please and thank you.
If you would like to follow me on Instagram, and I'm new to TikTok, you can follow me there under uberblonde4, U-B-E-R-B-L-O-N-D-E, and the number four. I am sending a musical serenade to the following people who make this podcast possible. Marc Aflalo is our technical producer. Ryan Delehanty is our podcast coordinator. And the manager at AMI-audio is Andy Frank. Until next time, yes, doctor, I am always this pale.