Narrator: Welcome to Simply Unbreakable with Kristy Dickinson and Brenda Agnew, a podcast from Chronically Simple. Simply Unbreakable is about telling stories, learning from each other, and forging new ways to navigate the healthcare system together.

Kristy: My name is Kristy Dickinson, and I'm very excited to be here with my friend, Brenda Agnew. Brenda and I have spent years navigating our healthcare system, building relationships, and finding peace from connections with others. Plus, we love to hear ourselves talk. So we thought what better way, but to sit down, grab a hot beverage, and start a podcast.

Brenda: Simply Unbreakable is about telling stories and learning from each other and forging new ways to help navigate our complex healthcare system and relationships. There is something so powerful in sharing personal life experiences as a means of connecting with our broader communities, and helping each other, and providing insight to help educate us.

Kristy: In Simply Unbreakable, we hope we will share not just our stories and learnings, but those of the other resilient, inspiring people we have been lucky enough to connect with along the way. Our topics will range from light yet informative, and at times heavier and more intense, but our goal is to share the stories that need to be heard.

Brenda: Welcome to Simply Unbreakable.

Kristy: I am Kristy Dickinson. I am 44 years old. We're going to do some ages 44 years old in the body of like a 97 year old, but I am a wife to a first responder. My husband is a firefighter. I'm a mum to three children. My oldest is 13, my middle son is 10, and my daughter is eight going on 22. I'm recording this from my bedroom floor because we're in the middle of a lockdown, and those three beautiful babies that I've now spent so much –

Brenda: Time with.

Kristy: – so much time with over the past year are being homeschooled, virtually, by their teachers, and I can’t bow enough to our educators.

For me, when I think about words that – you know, who I am, I always start with “I’m a wife, I’m a mother,” because that is probably in my mind what had defined me most, what I always thought I would be when I grew up. I'm an entrepreneur, I had a recruitment firm before I got sick that I managed. I'm self-employed and ran my own firm. And then I got sick, and I wasn’t expecting a diagnosis, a life-changing diagnosis, of a chronic illness. I don’t think anyone grows up and thinks like “when I grow up, I want to be an astronaut and get diagnosed with rheumatoid arthritis.”

Brenda: They don’t?

Kristy: No.

Brenda: No?

Kristy: And I feel like, people, maybe if more did, that the blow –

Brenda: Right.

Kristy: – when you would get the diagnosis –

Brenda: [unintelligible].

Kristy: – would be a lot less.

Brenda: Right.

Kristy: So, if we’re going to be realists, like maybe we should start prepping our children for that, but my health journey really started, and you'll hear me talk throughout these podcast episodes a lot about rare disease because that is the community that I'm a part of for my primary diagnosis. And I think it's interesting because the average time to diagnosis for a rare disease patient, I think the last time I checked, was like eight years, eight to 10 years.

Brenda: Wow.

Kristy: It's one thing to hear a stat, but then think about everything that's involved in those eight to 10 years, doctors’ appointments.

Brenda: Searching it down. Yeah.

Kristy: Yeah, searching it down, misdiagnoses. It's almost like a gaslighting of the patient because no one can figure out what's wrong with you, and then you start to question your own sanity. “Is this really happening?” Now in my case, oh, it was happening. Like I was hospitalised, I couldn’t – we had super infections that my body couldn't fight. I was having surgeries on joints for like – you know, I was early thirties, and my ribs pop out, or my knees pop out, and you know, I'm not a – Listen, I don’t work out every day.

Brenda: You don’t? You actually don’t?

Kristy: You’d be shocked to know. But I’m not in like the worst physical health.

Brenda: No, you shouldn’t be popping stuff.

Kristy: I shouldn’t be popping stuff.

Brenda: No.

Kristy: Like shouldn’t be popping joints just walking up a stair.

Brenda: Yeah.

Kristy: So it was an interesting journey to diagnosis, and then you get your diagnosis, and you think, “OK, I finally got the diagnosis,” and then it becomes a “What do I do now?” Because sometimes, oftentimes for rare disease patients, you get a diagnosis, they still don't know how to treat you.

Brenda: Right.

Kristy: My condition that I have is called Ehlers-Danlos Syndrome, and it is a connective tissue disorder. So I wouldn't have been able to tell you all of the physiology that's impacted by connective tissue 10 years ago, but your connective tissue is the glue that holds everything in your body together. Your whole body is made up of connective tissue. So having that be faulty, probably not the best.

Brenda: Right.

Kristy: Not the best thing. So for me, my Ehlers-Danlos is – it's an interesting condition in that no two patients present the same, and that's, I guess, probably part of the reason why it's so hard to diagnose and also so hard to treat.

Brenda: Right.

Kristy: My disease, it shows up in me with incredible hypermobility, very, very flexible. My joints have no stability. So I roll over in bed and a rib pops out. Like I said, walk up or down a stair, a knee’ll pop out. I have problems with all my big joints, and then I also have some vascular considerations. So my veins are not great, and I'm always covered in super huge bruises. I wake up a lot and say to my husband “did you happen to –

Brenda: Punch me in the night.

Kristy: – pummel me last night?” Yeah. The answer was “no” always. So you wake up like you went 10 rounds. And so I'm at risk for things like an aortic dissection which is scary when you're young, especially when you're young, like with young children, because you're walking around in a body that kind of feels like a ticking time bomb.

Brenda: Mm-mm.

Kristy: Like when’s it going to go. I never know when a joint is going to pop out, it's not something I can prepare for. And that is – I can’t wait till we talk about mental health because you've got the physical demonstration of your disease in your body, how it presents itself physically, but then you’ve got the mental side of things. And for me, losing trust and faith in my body was a massive job. It's been a challenge, an interesting challenge.

And then of course, when you get one diagnosis, like that's not enough, you get all these things that I now know are called co-morbidities.

Brenda: Yeah.

Kristy: So I've got Ehlers-Danlos at the top. It’s like the hierarchy of needs. Like you’ve got this –

Brenda: Yeah.

Kristy: – Ehlers-Danlos at the top, and then I’ve got ankylosing spondylitis which is an autoimmune disorder, and that impacts my lower back. And I've got medullary sponge kidneys, which gives me chronic kidney stones and kidney infections, and mast cell activation which causes like random antihistamine reactions. So I have no allergies, but I break into flares for no reason. My body likes to keep me on my toes –

Brenda: Yeah, no kidding.

Kristy: – is what I’m – like I describe it. I don't think about them all together very often, but as I'm describing it, it's like I live in fight or flight, like I'm in flight like all the time.

Brenda: Yeah. Well, I mean, and one of those would be enough for somebody to deal with, right?

Kristy: Yeah.

Brenda: Even one of those conditions –

Kristy: Yeah.

Brenda: – let alone all of those conditions is the way I think about it, you know?

Kristy: Yes, you’re right, and again, like I try not to think about it. I made a conscious decision a few years ago that I was not going to let this dictate my life anymore, because I got the diagnosis, I shut down my business, I took a pause and tried out like “OK, what am I going to do now?” And I was sad, and I kind of went into a pity party for a while. And that's normal. Like from all the books I've read and therapy I've done, like that's a good healing to acknowledge that, but I didn't want to live there.

So it is a lot to deal with, and some days I stay and pull the covers over my head and I take a little bit longer to get up and get out of bed, but I try more often than not to not focus on my illness kind of as a primary dictator of what I'm going to do that day. I try.

Brenda: But, no, I think that's an important thing for us to talk about when we get to the mental health piece is how people choose or not choose. Sometimes it’s out of your control the way that you handle what’s going on around you. Sometimes it’s just innate in your personality or in your own maybe pre-existing mental health state previously.

Kristy: Yeah.

Brenda: And, again, I’m already diving into it when I shouldn’t be talking about it yet, but …

Kristy: I think the two are so intrinsically tied, mental health and physical health, and I’m challenged by anyone that either lives with or cares for someone with a complex chronic life-changing diagnosis. I would challenge anyone that says that it's had no impact on their mental health, I simply don’t believe that. It might not be as great as for other people, but there’s no way you get – you know, there’s no way your life turns on a dime and that doesn’t impact you.

Brenda: It is still amazing to me though that even in my community, when I look at the people that I know, and the people that I talk to, and the people that reach out, it is actually still amazing to me that there are so many parents that have just really been able to take it and roll with it. And, yeah, I'm sure they've had their breakdowns along the way, but it hasn't left them with a really impactful – a big impact on their mental health per se.

But then other ones where, you know. You know, there's medication and therapies and they're having a really, really tough time, and it’s really interesting because there doesn’t seem to be any rhyme or reason or pattern to it, and that’s the part that I find really intriguing is … Yeah, I’m never shocked when I hear someone talk to me about their mental health struggles going through these journeys, but I almost get a little shocked when I hear people who say, “no, I’m good, I deal with it day by day, and I take it a day at a time,” and I think “whoa, I can’t. Good for you, because it’s not how I’m built, but good for you if you can do that, and you can …” you know?

Kristy: So we haven’t introduced you and your story yet, but my question to you would be were you built that way prior to McLean being born? Because I'll tell you, before I got sick, I still couldn't – [coughs] – excuse me – I still struggled to take things a day at a time.

Brenda: Yeah.

Kristy: Like I’m a go-go-go person.

Brenda: No. Yeah.

Kristy: Yeah, so …

Brenda: Yeah, I mean I think that I was predisposed. I think it was like gas to a flame. Like it really was. I mean and I spent a number of years in therapy, and I need to go back into therapy, but I would speak with my psychiatrist and he would just say, “I wish I knew you before all of this, because I know what you're like now, but I have a feeling that you were probably pre-wired for this before.” I mean I was definitely always been a Type A personality, super organised, like to have control over everything, I don't like change, I don't do well with change.

And so you throw a person like that into the world that I was thrown into, and I don't think we could have expected anything different than for it probably just to ramp up the way – you know, the – the – I don't want to say issues, but, yeah, I mean it was definitely going to amplify all of those things, but make them more difficult because I was in a situation that was really uncontrollable and wasn't going to go away, and you just couldn't move past.

So I've never been a day at a time, I'm at the airport three hours early. Oh, Kristy’s there earlier than I am, but I’m at the airport three hours early, I prebook my seats, I make reservations for dinners, you know, I like to make sure that things are planned, and things are done, and I can control outcomes, but …

Kristy: Well you hit the real word there is control.

Brenda: Mm-mm.

Kristy: And so much of living in the worlds that we live in is lack of control.

Brenda: Zero control.

Kristy: Zero control. So tell …

Brenda: Really, it’s truly zero control.

Kristy: Zero, like and I think the whole world in what they’ve seen during this pandemic have experienced a little bit of what we live in daily.

Brenda: Mm.

Kristy: Because we as society, I think we fabricate this idea that if we do all these things, we’re in control.

Brenda: [unintelligible].

Kristy: We have control about what’s going on.

Brenda: No ?

Kristy: And like, you know, so it’s humbling, and I think the whole world was brought to its knees. But I think anyone that was living with what we live on a daily basis was like “Oh no, we got this. We know.” Like why wouldn’t the whole world shut down for a global pandemic, that could happen.

Brenda: This is just the life that I’ve lived for the last 13 years, so we’ve had to learn to adapt and have no control over things, and do all that. And then I have to say, and I have people that put their hand up and they’re upset because, yeah, their kid can’t do this, or, you know, they can’t go on a trip. Well you know what, I mean I don’t want that to sound facetious, but that’s just the way it is. Our life has been like that for 13 years where we have not been able to do things because of certain circumstances or because of certain situations.

You know, we’ve had birthdays ruined, we’ve had Christmases ruined, we’ve had holidays that have been impacted by what have been going on. You know, we spent a lot of time indoors because of fear of viruses that are out there. And I mean we live a full life, but we had to do those sorts of things, and so we’ve had a lot of sacrifice in our life.

So for me, yeah, I mean I think has this affected my mental health this whole pandemic thing, it has, there’s no doubt about it, but probably in different ways than other people because I’m just – I’m used to this kind of stuff happening, I’m used to having this kind of impact on our lives. You know, I won’t define myself as a wife and a mother, I’ll just go right into the – so married, husband, two boys, my older son is now 15 and my younger son is 13, and it’s my younger son, McLean who has cerebral palsy, and so our journey kind of started when – you know, when I had Chase I was a little bit older, I was 35 when I had him, and I said “Oh, we should probably speed this process up, and if we’re going to add to the crew we should do that.”

And we did, and we found out that we were expecting identical twin boys, and if all had’ve gone right we would have had three under the age of two. But somewhere along the way, when my older son was 19 months old, we had a condition known as twin to twin transfusion that affected us acutely. So without going into a ton of medical terms, essentially when you're expressing identical twins, they share a placenta and they share a blood supply, and they can get what's known as twin to twin transfusion. It can be chronic, or it can be acute. It was something that I had been watched for the entire pregnancy and had no issues with, so we thought that we were probably going to come out of this OK.

And my ultrasound on Monday looked absolutely perfect, and they said, “If you go full-term, you'll have two eight-and-a-half pound turkeys somewhere around Thanksgiving.” I was due October the 15th, and I thought “OK.” And so that was Monday, and then on Thursday I had an emergency C-section to deliver McLean because our son Brayden had passed away in utero.

And the reasons for that, I mean, you know, obviously it was an acute twin to twin transfusion situation, we had no indication, there's no way to know that that's going to happen. It’s not like your body says “Oh, this stuff is going on,” it was just something that I noticed. I noticed a decrease in movement, and “Ah, let’s get this checked out,” and then, yeah, realised what had happened.

So that, yeah, so that on its own I think is enough to send anybody into a tailspin. But so McLean was born, they made a decision to deliver him to make sure that he could get the best chance. And he was looking really good. I mean he had a lot of things to deal with, he was 29 weeks, he was severely anaemic, he’d lost two thirds of his blood, his lungs were under-developed. So he had some typical preemie stuff going on, and just the shock of what had happened to him in utero was a lot, but they had every indication that they would treat the blood loss, we would give him support for his lungs, all of his head ultrasounds were looking good.

So we were sort of expecting a fairly routine, if you will, course. So after he was born, he was taken to a level three nursery, but what was really interesting is I remember – so they came to get him about 2:30 in the morning, and I remember them saying, the transport team saying, “OK, you know what, he’s good,” you know, “we’ve given him a blood transfusion, we’ve got him on …” you know, “we’re going to intubate him,” you know, “we’ve got him. His lungs are being supported,” you know, “we’re going to get him there, he’s going to be good,” you know, “we’ve got this.”

And I remember – you know, my husband’s an eternal optimist, and he was like “OK, Bren,” like “this is good, they’ve got this.” And I remember distinctly to this day saying, “I don’t think we’re going to come out of this unscathed.” And I don’t know why I said that, I would have had no reason to have thought that. I had every indication at that point that they were going to take him, and things were going to be fine, but that’s just that mother’s intuition if you will.

So anyways, off he goes, he goes to a level three nursery. Somewhere around day three of life he develops jaundice, very, very typical. Anyone that’s listening who’s had a baby, like good odds that your child’s had jaundice at some point. He developed jaundice, but for a whole host of reasons he was not treated for his jaundice. And when you’re not treated for jaundice you develop hyperbilirubinemia, which is a word I’ve learned to perfect over the years, which means you have too much bilirubin built up in your system and it becomes neurotoxic. And that can go through the blood/brain barrier, which is what happened to McLean, and so his brain sustained damage from the increase of bilirubin in his system.

It’s easily treatable with phototherapy which breaks down the bilirubin and gets it out of the system, but, again, he wasn’t treated for jaundice, and unfortunately that left him with cerebral palsy and also left him severely and profoundly deaf.

So we didn’t know that at the exact time. We knew there was something going on, but you’re kind of holding out hope that he’s just having a rougher, maybe, journey in the NICU. And when we were discharged, we really were not discharged with any red flags. It was “he'll catch up, he's been through a lot, let's give him time to figure things out.” So we really had no reason to think that everything wasn't going to be OK.

And then the first diagnosis, like as you talked about the diagnoses that just keep coming, but the first one we actually got was his diagnosis of his hearing loss. And that, to this day, was the most difficult diagnosis that we received, and I don’t know why. I think, in thinking in the back of my mind when he was born, I’d read all the books. You know, they talk about babies being born prematurely, there’s a chance that they could have cerebral palsy, there’s a chance that things could go on. So I think I had CP in my head somewhere sitting there, but we weren’t expecting the diagnosis of the severe and profound hearing loss.

And so when we got that diagnosis it knocked me right … That one I remember. I remember that one, just the shock and the spots before my eyes, and I couldn’t catch my breath, and I couldn’t hear. You know, all I could hear was wah-wah-wah-wah-wah as she’s giving me the diagnosis, and then that’s what set out, and then we received the official diagnosis of cerebral palsy about a year later.

So, you know, and I mean, and, you know, and then again from there I could go on and on. You know, we’ve had our share of GI issues and ortho issues, and respiratory issues, and everything that had just been a result, ultimately, of his cerebral palsy diagnosis.

So, yeah, so, you know, our journeys, and Kristy and I talk about this a lot, our journeys are very similar but yet very, very different because I’m not living with that condition like Kristy is, I’m managing that for someone that I’m caring for, but you still – I almost feel like I’m the proxy, right? So I still go to the appointments, I still get the medications, I still research the interventions, I still do all of those things. And it’s just done from a different lens, and, yeah, that’s my story.

Kristy: I mean I’ve heard it, I don’t know, a hundred times now, but every time you talk about it I – I don’t know, I’m blown away by – you know, you are a wonder woman to me, so I have the utmost respect for what you do 24 hours a day, seven days a week, because I know as a mum I would rather live with the pain that I live with every day –

Brenda: Yeah.

Kristy: – than ever have to watch someone I love –

Brenda: Yeah.

Kristy: – navigate that. So I feel like you get what you get almost.

Brenda: Yeah.

Kristy: And so I’ve got this, but I can manage it, and it’s just me.

Brenda: Right.

Kristy: Your point. And we have learned so much. Brenda and I started this journey as friends because my son Keegan, and McLean, started Grade One together. And I like this story, it’s – I didn’t know it until Brenda and I started talking about it, but Keegan went to a new school in Grade One, he didn’t go to kindergarten at his Elementary School. And so we dropped him off, and he’s like a nice little boy, and goes into school, and so after a few weeks we’re, you know, “Do you have any friends?” “Yeah, yeah, I’ve made some friends, and I’ve got this friend McLean,” and I’m like “Great,” you know, like “I’m so happy you’re making friends.” And so he talks about this little boy McLean quite a bit.

Brenda: Mm.

Kristy: And it was like months before we learned that McLean actually was in a wheelchair.

Brenda: Yeah. Yeah.

Kristy: And so like that never came – Keegan and McLean’s friendship, still to this day, is so special.

Brenda: Yeah.

Kristy: And I look at it in awe because like McLean is just McLean.

Brenda: Yeah.

Kristy: There’s no label, there’s no –

Brenda: No.

Kristy: – distinguisher of him being any different than any of other kids in his class. And I think as we’ve watched these boys grow together, we are in a smaller school community, so we’re lucky that they’ve got a smaller classmate. But they are probably the most inclusive –

Brenda: Yeah, they are.

Kristy: – and kind, empathetic, and passionate group of kids –

Brenda: Yeah.

Kristy: – that … And then I know, as a mum, so much of that for Keegan comes from his friendship with McLean.

Brenda: Right.

Kristy: But it’s so easy. Like they are just so easy. And you see it a lot more because Keegan’s over at your house.

Brenda: Right.

Kristy: Like I think he would move in with you if he could, and he probably will at some point.

Brenda: Well I think it’s because we make him cookies every time he comes over –

Kristy: Every time.

Brenda: – and we feed him very well.

Kristy: Yes, you do.

Brenda: Yeah, I forget he’s here.

Kristy: Right. He goes to your house and gets fed like a king. So Brenda and I started this journey as just two mums –

Brenda: Yeah.

Kristy: – you know, trying to navigate what Grade School looks like. And then she talked me into being on our parent council, because Brenda’s a doer, and so I’ve kind of trailed along there.

And then as I got sicker, I reached out to Brenda, and because, you know, I look at what you manage with McLean on a daily basis, and Brenda is probably the fiercest advocate I know.

Brenda: I’m getting tired a lot.

Kristy: And I know a lot. Yeah, you are getting tired now, but –

Brenda: [unintelligible].

Kristy: – even when you are exhausted –

Brenda: Yeah.

Kristy:  – you are still at 150% of what normal society I think would be at.

So if you are ever in a situation and you need someone in your corner, Brenda Agnew is your person. And she has become that warm blanket getter for me. I’ve learned so much during the initial stage of our friendship where it was just me watching you, and watching you have to fight for things like wheelchair ramps, and accessibility into schools and, you know, healthcare for McLean. And I guess I was absorbing it without really realising it, because when my world fell out from under me, you were like my first call for like, “OK, well, how do I do this?” Like “What do I do now because I’m not getting anywhere, I don’t know how to keep everything under control. I'm not able to use my voice, I feel very overwhelmed and very vulnerable.”

And we talk a lot about advocacy, and the difference between being a caregiver advocating for your loved one, and then being a person who is sick trying to advocate for yourself.

Brenda: For yourself, it’s very different.

Kristy: And at times I’m not my best advocate, and it’s been a learning process to be able to put up my hand and say, “I need you to tap in because I can't. I don't have the ability to say what I need anymore.” And as a Type A controlling person, that vulnerability is still hard. And I've got phenomenal support between you and my sister, and Simon and my dad, and I still really struggle with putting my hand up, as I know you do.

Brenda: I was going to say, I mean I'm the same way. It's the same. I think that's just – you know, you go back to our innate personalities and I think it's the same. And what's interesting though is now when I do put up my hand for help, people don't know what to do sometimes, because for so many years I slapped their hand away, and “What do you need?” “Nothing. I'm fine.” “What can I bring?” “Nothing. I'm fine.” I mean that is just me, that has always been how I am.

And then you get to a point where you’re like, “Yeah, OK, I’ll … yeah, I could use some help.” And I think legit people are like “Oh, OK. OK.” You know, they’re happy to do it, but they’re just – you know? Or they get really caught off guard if I’m not on my A Game, you know, so they’re …

Kristy: Yes.

Brenda: I mean it’s happening more and more now as I get older and I get more worn down and I get more tired, and, you know, you just can’t keep up the same level of energy and the same level of – I don’t think the same …

Kristy: Intensity?

Brenda: You can’t, yeah. I can’t anyways, I just simply can’t. And so as I get older, you’re kind of like “I do need some help.” And like I said, people – it’s just it’s interesting, because I have to sort of define what I need help with. And they’re happy to do it, but I think it’s a shock when I actually either accept an offer for help, or reach out to ask for help, because I just don’t, we just haven’t, it’s just not what we do.

Kristy: Yeah, well I know, I remember back when McLean was in Sick Kids with his hip.

Brenda: Right.

Kristy: And when I came to visit and you said, “I need a Starbucks.”

Brenda: Yeah.

Kristy: And like you never ask.

Brenda: Right.

Kristy: So even just that, like when I said, “I’m on my way in,” you know, and you, I think, had said “Don’t come, I don’t need anything, I don’t need you.”

Brenda: Yeah.

Kristy: And I’m like “No, I’m on my way.”

Brenda: Yeah.

Kristy: But I remember when I got there and you were like “Yeah, I think I could …,” like “Can you get me a tea or …?” But that, that little, small ask was like … mm.

Brenda: Yeah. Whoa.

Kristy: And but what it did was it cued me that I’m walking in to see you and you’re not going to be your normal you.

Brenda: No.

Kristy: And you weren’t.

Brenda: No. No.

Kristy: That was a really hard, exceptionally hard time for you.

Brenda: Yeah.

Kristy: And so I think those of us that know you well will know, and I know that I’m not a part of your cohort of special needs mums that you go to –

Brenda: Right.

Kristy: – but as a friend –

Brenda: Yeah.

Kristy: – when you say, “I could use a coffee,” –

Brenda: Yeah.

Kristy: – that means so much more than just “I could use a coffee.”

Brenda: Yeah. Yeah. Well the fact that I let you come visit too. Because I don’t. I don’t let anybody come visit when I’m in the hospital. When I’m in the hospital with McLean I don’t – I’m like –

Kristy: Yeah, I know.

Brenda: – I just … Yeah. Because it’s just, I don’t know, it’s a weird … And you feel like you have to entertain the person, and you feel like you have to … you know, you have to … I don’t know. And I just – I don’t want to do that, I just want to – I don’t want to do that. I think it’s just such a weird …

Kristy: Sure.

Brenda: It’s such a weird situation to be in, but …

Kristy: Yeah, I mean, you know, and I’ll say a little bit about when you had mentioned about the advocacy, and the system navigation, and I think the sad part in all of that is that you’re just so forced into it, and you really don’t have a choice. And if there was one thing that I’ve could make easier, I think if there’s one thing that I tried to do over 13 years, you don’t want the next person to go through the same situation, and that is the part that probably frustrates me the absolute most.

Is when I talk to a parent who's been newly diagnosed, who can't get a referral for therapy, or can't get an MRI for their child to confirm a diagnosis, or they can't get this and they can't get that, or they call me because they're having issues in the school system and they can't get access to, and I think, “Why are we still here? Why are people still …” I still see it, but I'm like, “Why are we still having conversations about problems with accessibility? Why are we still having conversations about inclusion? Why are we still having an uphill battle to get access to interventions and therapies.”

And it boggles my mind, because I think “Has no one anywhere along the line listened or paid attention, or cared or …,” you know, and it really truly – I think that’s the part that really truly makes everything so much more difficult and unbelievable in these journeys. And I think you would admit that, is it would be so much easier for us to be in the situations we are in if we didn’t have the consistent barriers that we encounter. And they’re not – they’re unnecessary, they’re attitudinal –

Brenda: Yeah.

Kristy: – you know, they’re societal barriers, they’re not necessary, and that’s the part –

Brenda: Yeah.

Kristy: – that really, really, really, I think, makes things so much more difficult when patients are trying to navigate – patients or caregivers are trying to navigate this complex journey. It doesn’t have to be this complex.

Brenda: Right.

Kristy: The complexity itself is the diagnosis, the complexity is the comorbidities, is the medication, is – the rest shouldn’t be [unintelligible 00:34:41].

Brenda: [unintelligible].

Kristy: It shouldn’t be, because we have enough to deal with.

Brenda: Yeah.

Kristy: So that’s the part that really … And I talk a lot to my special needs’ community, and we just say, “you know, if we could just have that stuff out of the way.”

Brenda: Oh. If we could just be sick, or Freddie could just be a caregiver.

Kristy: Right.

Brenda: Because what happens is you think … So it just … I feel like it overshadows so much other things. It takes so much energy and so much resource to do all those other things that it takes away from the things you could be doing that could actually impact or make things more functional in your life, or make things better in your life.

And so when you have to fight for funding, or it takes six months to take a power chair, let’s say, that’s six months that you’re not able to utilise that piece of equipment. And, again, it’s just it’s things like that, it’s the barriers, and myself, I will sit there sometimes and say, “I really should go and do this with McLean,” and then I think “I’m not doing that.” I’m not doing that, because I don’t want to put up with what’s going to probably – that we’re going to encounter if we try to go and do that.

You know, and I think that’s the really tough … I mean, you know, Kristy, you and I talk about this when you’re like “Shall I go to the ER, shall I not go?” I mean take COVID out of it.

Kristy: Yeah.

Brenda: You take that stuff out of it. I do the same thing, I’m like “should I go, shouldn’t I go, what …” Argh. Because you know, and this is not a slight against our frontline workers or our healthcare workers, I have the upmost respect for them. There’s good ones and bad ones like in any profession, but when you have to sit there and honestly think about whether or not – we're not talking about for a hangout, we're not talking about going because my kid's got a rash. I mean, we're talking about respiratory issues, popped ribs, we’re talking about GI Issues. And when you actually sit there – and I’ve been in situations where I’ve gotten McLean into the hospital and the doctor’s actually said to me, not to be mean, but he’s actually said to me like “Brenda, you’re off your game.” Like “why weren’t you here days ago? What took you so long to come in here.”

And I have to say, “because I’m going to have to deal with the dumb questions,” all the stuff you have to go through there, and “that’s why I didn’t come. If I thought it was going to be an easier go, we would have been here a little bit easier.” But instead we make a decision to not come in because I don’t want to go through all of that, and you know that’s – I don’t know, to me that’s a huge impediment to people being able to get access to care when they need it.

Kristy: Well because also, too, like what’s it doing to the physical health of waiting those extra days? Like I know that I have at times waited and put myself in jeopardy and made my condition worse by waiting two or three or four days, because what’s my motto, well it’s either going to kill me or it’s going to go away. Like that’s not a good way to live. Like that is just not.

Brenda: No.

Kristy: But that’s indicative of how exhausting it is to have to try to advocate and fight for the care that you need.

Brenda: Yeah, because it’s not as simple. I’m sorry to cut you off, Kristy, but think about the – like I’m trying to do the flipside a little bit. So think about if – you know, I’m knocking on wood – think about if Gray was sick, if something had happened, or Keegan had a respiratory, you go in, it’s probably going to be a pretty – it’s going to be probably more of a routine, they’re going to hook him up, they’re going to say “his SATS aren’t great, let’s do a lung …” you know, “let’s do an x-ray, he probably has pneumonia,” it's going to be a little bit smoother.

Kristy: Yes.

Brenda: You know, you walk in. If I walked in with a kidney stone, I have no pre-existing condition, they’re going to say, “get a history of this,” and I’m going to say “no, I’m in pain,” they’re going to say “OK, let’s …” You know, you go in, and it’s a little different, and I’ve heard you have to tell your story, and it’s a little bit – and then they’re like “wow, is it chronic, is it acute, is it something that we should be treating here, should you go to your family doctor, this is really a place for acute.” And, you know, I get the same thing with McLean, I go in and I’m like “wow,” you know, “the ER’s for an acute situation, and this is …” You know, and you’re like “man,” if anything you think it would be the other way around where we would walk in with that medical history and they would almost take you in quicker because … you know?

Kristy: Well I think part of it, too, is people get intimidated because I will say – like I don’t metabolise medications the same – like properly. And so now I have phenomenal healthcare providers, like I think back, I had an endoscopy and a colonoscopy on – back in November, and my GI doc knows me, and he knows me well.

So now he knows me because the first time I told him “I don’t take anaesthetic well, you need to give me enough to knock out a horse,” he’s like “I’ve got you.” And then I was up halfway through the procedure and they were scrambling to get me back under. And so every time I go in now, and I’m like “Hey, good to see you,” he’s like “I’ve got the extra, you’re good.” And then I’m like I’m floored, because … So sometimes …

Brenda: So [unintelligible] to the first time though?

Kristy: Well, yeah, but I feel like there is still the – and I say this with – like I respect – you know I am a huge supporter of our healthcare providers, and I respect the fact that they went to medical school, but I will tell you no one knows my body better than I do. And no medical book prepared you for me, because they get, I don't know, like an hour about rare diseases, and then you toss in a rare condition that presents differently in everyone, that had no research probably when you were even in medical school because all the breakthroughs have been in the past 10 years.

So like my advocacy is different than yours obviously, but where I focus and where I'm so passionate about is getting patients access to their medical records, think about the number of mistakes that would alleviate it and avoid it if I had all of my healthcare information in one place. Listening, like getting – I know you're huge on this, and so am I, but like give me a seat at the table, and don't just make it like a seat so that you have the token patient or the token caregiver.

Brenda: No, it has to be genuine.

Kristy: Yeah, like genuinely respect me and understand that, no, I don’t have a medical degree, but I know a heck of a lot more than you do about Kristy Dickinson. And it takes a long time, I think, to build up that rapport with your healthcare provider, if – you know, I mean I’ve had to fire healthcare providers that are just not open to that, and that’s a fight. So like for you, you have to tell your story and that's an emotional – it's like another scar, like another slit, or another rip of your page every time you have to tell it. And you shouldn’t have to repeat it every time a new resident walks into the room, or every time.

Brenda: Well, and what’s interesting too, Kristy, is that well, you know, what I should tell people is that for point of reference, McLean actually does have a rare condition. And that's the part that I think sometimes, you know, I forget, and other people forget. But so when you talk about the medical and you talk about the … so kernicterus, so if you think about this, right, if you think about jaundice, it's treatable, it's almost like pool heel. It had been virtually eradicated, it really had. You don’t hear a lot of cases. We would hear more cases in the US of kids with kernicterus because their healthcare system was different so they would be kicking mum out a little earlier from the hospital with her full-term infant, she goes home, the jaundice isn’t being managed, it’s just a different jam.

But it’s essentially – it’s a third-world condition, it happens more in countries where they don’t have access to their routine things like phototherapy. So, when we were first chasing down a diagnosis, and the only reason I figured out – it’s probably a lot like your journey – the only reason I figured out what it was is because when he got his hearing diagnosis, they said he has this hearing loss called auditory neuropathy. What do you do? You Google it.

So I put him down for a nap, I Googled it, and it kept coming up saying kernicterus, kernicterus, kernicterus, and I’m like “what is that? I don’t even know what that means.” So it sat there in my mind. And then he, at eight months old, went for an MRI for consideration for a cochlear implant to treat his hearing loss, and the MRI came back and said, “brain damage consistent in the basal ganglia consistent with previous kernicterus.” And I’m like “what is this?” And everything you research about kernicterus; it just doesn’t exist. It literally doesn’t exist. It literally is – it’s a footnote because it’s not around anymore.

And so anyways, so then chasing down – trying to say that word in chasing down his diagnosis was impossible, because they were like “what are you talking about, people don’t get kernicterus anymore, and that’s not possible, it was obviously caused by his prematurity,” it was obviously caused by X, Y, Z. And every time I went into the ER they would say “well was it caused by his prematurity?” And I’d so “no, it was caused by this,” and then I’d get the weird look, “well it couldn’t have been,” and you’d have this conversation because it is so rare.

And that still happens to this day. But what's interesting about it is that I have to continuously remind them of that, because the way that his – his CP is not caused by those more traditional ways that the brain can be damaged either by a lack oxygen or something else that's happened to the brain. And it's a different part of the brain with kernicterus that's affected, and so even the way his movements manifest themselves, like when we went in for his hip surgery, we had to be very acutely aware that his movement patterns will be different because he has a rare condition. He has a dis-kinetic cerebral palsy that you just don't see as much of anymore because that dis-kinetic CP almost made an exit when kernicterus just stopped happening.

So, you know, again, I'm not in that rare disease world in that we know what the diagnoses is, but I feel like I still live in that rare real, and therefore I have to have the conversation a lot to say, “I know more about kernicterus and how it affects him than you will ever know. And it's not a lack of respect it's because you didn't learn that.” And I have doctors who say to me, “I have not yet seen, ever met a child, with kernicterus. I've never, ever met that.” So they’re fascinated by it, and even with his hearing loss they were fascinated by – when they did his cochlear implant, they had never put one in at Sick Kids into a child with kernicterus, so they didn't know how it was going to go.

But I think it's always important to mention that that's how his CP happened, because it is different. But, again, back to your point is I need them to understand and listen to me, because 13 years down this road I'm not – this is not my first kick at this.

Kristy: And sorry to interrupt you, but something that sticks out is when a healthcare provider says to you, “that's impossible.”

Brenda: Oh.

Kristy: Because I get that too, like even with – like they don't see a lot of EDS patients with ankylosing spondylitis, because EDS is loose and ankylosing spondylitis is a stiffening. Eventually, if left untreated, your spine fuses together. So I've had doctors, and you know, I cried – I cry a lot as you know – but this summer I met a new pain specialist and he sat down and he said, “I don't know what to do with you. I have never had a patient with both. You’re contradictory, so we can work together to figure it out.”

Brenda: Isn’t that nice?

Kristy: “But I need you to know I don’t know.”

Brenda: Yeah.

Kristy: And that was like an [exhales] –

Brenda: Yeah.

Kristy: – because it doesn’t make me feel afraid to hear “I don’t know.”

Brenda: No.

Kristy: What makes me feel afraid is when you assume you know and then you cause me harm, because that has happened.

Brenda: Yeah.

Kristy: And it [unintelligible] –

Brenda: Or dismissed you altogether.

Kristy: – or dismissed you, yeah, but it’s even more – like I would rather be dismissed than be a guinea pig. Like I’ll be a guinea pig if we both know going in that “OK, we’re going to try this, and we don't know if it's going to work.” But I have been on the other end of an ego that says they know better than me, and it's been an epic failure, so – and then at the end they’re like “mm.” But I have to live with those consequences.

Brenda: Yeah. Yeah.

Kristy: Anyway, that’s a rabbit hole for a whole other episode.

Brenda: Oh yeah. But I mean I think that’s an important conversation for us to have later on, I mean I think probably sharing some of those specific stories because we’ve had those two.

Kristy: But it ties back to advocacy, and why it’s important for, you know, when we can’t – when I can’t advocate for myself, when I have to tag you in, or tag in Simon, or bring in my sister. Having you guys who have an in-depth understanding so that – you know, I remember one hospitalisation, and my ankles swelled up to like the size of watermelons. And so I was in for something totally different, and the medications that they were treating me with weren’t working, and no one was listening to me, and I was tired, like I was incredibly ill and just couldn’t get my stuff together to advocate for what I needed. And my girlfriend walked in, and I said to her “can you just look at my ankles because the nurse is telling me that they're fine and they feel really not right.”

And so she pulls it down, and she's like, “good God, they're like three times their normal size.” So we call in the nurse, and she says, “this is not what she looks like normally, you need to do something about it.” And the nurse is like “well, you know, I think it’s …” And she’s like “No, something is happening here, she’s in pain, but these are not normal for her.” Now I was in a ger- … like I was in a ward with people over 80, where which I guess cankles is big in that population, I don’t know.

Brenda: Yeah. Yeah.

Kristy: But for me it wasn’t normal, and I needed someone who knew me to be able to forcefully say “you need to get the doctor, this isn’t right.”

Brenda: Yes.

Kristy: And because like the three times I had put up my hand and said something feels wrong, they don’t look like, they don’t feel right. So I think it’s – I don’t know, like I know we will talk a lot about advocacy, and the value of it, but it’s – you know, for so many reasons. And just it’s better – now he’s my inspirational quote – “it’s better not to have …” –

Brenda: Oh no.

Kristy: – I know. “It’s better not to have to go through it alone.” And you can’t even argue that.

Brenda: [unintelligible], I don’t know.

Kristy: Ah, you’re a bit of a lone wolf.

Brenda: I’m becoming more of an introvert through all of this, I really am. Yeah, but no, see that’s – you’re right, but I’m not of that mind. So I’ve got to tell you, like you’re absolutely right, but I have just gotten to a place where, you know, in the early years I really needed to have Graham alongside because I think mentally and emotionally, I couldn’t handle the information coming at me, so I would need him there because they’d start talking, and my brain would be trying to process it, and I would go into a bit of a shock.

And then I was like “What? What?” So I would say to him “What did they say? What? What? What?” So I needed him there, and I would say “I need you to …” And then it got to a point where I was able to process those. And I’m actually – like I’m – you know, I remember when McLean had his hip surgery, so it was a nine hour surgery, and I took him down there by myself. And it wasn’t because Graham didn’t want to come, but I said, “there’s no point you coming, I’m all good.”

And I went down, and I set myself up in the corner with my colouring books, and my laptop, and my treats, and I was probably the only person in that waiting room, in that surgical waiting room by myself. And I'm watching families of 20 people whose kids are in getting their tonsils out. And, you know, it was just – it's, again, I think because I just want to be in that moment, on my own, dealing with it by myself. So, yeah, it's hard to – I still am not at the point where I can tag people in. And you’re right, it’s probably easier to not go through it alone, there’s no doubt about that, and maybe the best equation I'll make to that is not so much that actual physical support that I might get, but it's my special needs community that’s probably – and it’s probably more what you’re referencing.

Kristy: Yes. Yeah.

Brenda: But – see, I missed the mark there, but yeah, there definitely is value in having other people who've been down this journey where you can send a note and you don't have to give any explanation, and they’re like “I got you, I know what you’re ta- …” you know, “I know.” But, yeah, it’s – I don’t know, it’s – sometimes I like to be alone. I don’t know. I always feel better when I don’t have to worry about [unintelligible]. You know, like I don’t advocate as well with Graham there because I can’t unleash the way I normally would, I have to be a little nicer, so sometimes I like to be alone for those types of situations. But you’re right, I mean I know you found support in your community and I found support in my community.

Kristy: Well I mean the irony is you started a community, so like as much as you say, “I like to be alone,” you know, you – so –

Brenda: Yeah.

Kristy: – I think you – I really feel like oftentimes you are the leader, and you are the trailblazer, but then behind the scenes there's a lot of – you know, you have a safe place to post a question. And they might not be sitting in the surgical waiting room with you, but you know that you have an army of people that you could say, “I need this.”

Brenda: I agree. Yeah, absolutely.

Kristy: And within 10 minutes you would have something on your porch.

Brenda: Definitely. Yeah. Yeah.

Kristy: And so, you know, we just talk about it differently I think, but …

Brenda: Yeah, that’s because you’re looking for an excuse to get that tattooed or something, or – But like if I look at – and I look at the mother’s [unintelligible 00:54:12] and I’m like [unintelligible 00:54:12], but there’s one, it says – OK, I’m going to look at it, and I can’t because I’m squinting, but it says something like – something about “kind heart, fierce mind, and brave spirit” is up on my wall, OK? So I look at it all the time, and I literally am – I’m just like “how is this on my wall?”

Kristy: Right. Do you barf a little in your mouth?

Brenda: I do. Whereas I'd rather look over and see my pop, whatever those are called, my Funko Pop of John McLean from [unintelligible 00:54:41].

Kristy: [Squeals].

Brenda: That’s –

Kristy: Bubble head.

Brenda: – right, that’s more my style, but, yeah, I mean, again, when we talk about mental health, I’m having to change some of the ways that I approach my thinking because I am getting tired, and my mental health is suffering, and I'm needing to find different ways to cope, and some of those are some inspirational …

Kristy: We’ll do a whole episode on caregiver burnout. But, you know, I will just sit back and listen, because I don't experience that other than getting memes from you when I know that “Oh, she’s done.”

Brenda: As a teaser for that, I got to just tell you. So I got a message from a mum yesterday, we were talking about something, and she said – we were talking about something that's coming up that could be useful for caregivers, and she said, “is this going to be valuable for me?” And she said like “we're short 32 hours a week plus of home nursing, and a nap just isn't enough.” And I said, “yeah.” I said, “if I hear take a bath or go for a walk or use some lavender one more time, someone's getting throat punched.” So, you know, it's – so the kind of caregiver burnout is definitely something to talk about because it is not – when I look at those top five ways to reduce your stress, I’m like “OK.”

Kristy: Yeah. Well that’s our first episode in the books. We are looking forward to sharing more stories with you in our upcoming episodes. Thanks so much for chatting with me today, Bren.

Brenda: Thanks for a great conversation. And I'm already looking forward to our next one.

[00:56:24 - 00:56:27 - Music]

Narrator: Thank you for listening to this episode. To make sure you never miss an episode, please subscribe on Apple Podcasts, Google Podcasts, Spotify, or the app you're using now. Visit us on the web at chronicallysimple.com. There you'll find recaps of each episode as well as links to all of our social media channels. Like Simply Unbreakable? Leave us a review to help others find us as well.

‍

‍