Episode Transcript
[00:00:00] Speaker A: Foreign Ladies and gentlemen, how are you doing? It's been a while. Rob Daniels checking in for another episode of Awareness and episode number 19.
Sure hope the, the summer is treating you well thus far. It has been quite some time. Like I had mentioned last week, I was off, but we're going to try and come out with as many episodes as possible as the summer continues to roll on here. So keep on enjoying the heat outside and because remember, in like January, you're going to be like, where was that, you know, 40 degree day back at the, the end of July, early August. So enjoy it while you still can to the fullest. And of course, take regular breaks, air conditioning, that's all good part for mental health too because you know, you get agitated in this heat after quite some time. So take some breaks and of course stay hydrated. And I thank you so much for being here wherever you happen to be, watching this podcast or listening to this podcast. Thank you so much for doing so and please subscribe and like where you can. That would certainly mean a lot. Again, it is awareness. Episode number 19.
Fostering a more compassionate, empathetic and accepting society. That's what we're all about here and trying to raise more awareness, bring things into awareness in order to do just that, foster a more compassionate, empathetic and accepting society. So without any further, further ado, I'd like to introduce you to my special guest here, Jordana, who I have known for ever. But we lost touch. We went, you know, in and out of touch. People have, that's, that's typically what can happen as, as years go by, that you, you, you sometimes lose touch. But we're, we're connected on social media. That's what the great thing is about social media. Some people don't like that, but I love it, like reconnecting with people because people are just busy. They get new phone numbers and they just, you know, that's what social media is about. You want to be social, you want to get on social media to, to reconnect with, with people in your life. And so, Jordana, I knew from way back in high school, so far, I've probably known you what now, Jordana, 22 years? 20. Something like that?
[00:02:38] Speaker B: I think so, yeah, something like that.
[00:02:40] Speaker A: Yeah, something like that, yeah.
So listen, before I want to we talk about everything and catch up, I just wanted to thank you for, for taking the, the time out of your very busy hectic schedule, as I've read online that you have. And thank you so much for doing this to, to spread awareness and help others.
So appreciate you.
[00:03:04] Speaker B: I'm so honored that I'm, that you even asked me to be on the show.
I love what you guys are doing. I think you're, what you're doing is so important and it's making a difference and it's, it's really cool to talk to you after all this time, so.
[00:03:26] Speaker A: Oh, yeah, I think so too. I think it's just great to catch up and know what you've gone through because you seem to have been turning your pain into purpose. And that's what this is sort of like how I started this show too. I think it's just what it's kind of like what do we do with the pain? And you've done some tremendous things which we'll get into. So this is going to be a very powerful and deeply personal episode sitting down here with Jordana. She is a mother, she's a wife and she works for healthcare workers. She's from Toronto and she endured over 25 hours of surgery in just five years, including a double mastectomy with DIEP, flap reconstruction, a total hysterectomy and a thyroidectomy. Living with Cowden syndrome, fibromyalgia, PTSD treatment resistant depression, ADHD and more. Jordana going to be opening up about what it means to navigate life with chronic illness while raising her seven year old son and helping care for her dad as he battles cancer. She's also going to share today on the show how the support she received from mankind during her cancer treatment made a lasting impact and why she's now documenting her journey to create a life record for her son and future generations. And Jordana also offers heartfelt advice for others that are facing health challenges on this episode, caregiving responsibilities or both. She's reminding us that we're never as alone as we think. So this is a story of pain, persistence, vulnerability. Remember, vulnerability is a strength and grace and you're not going to want to miss in depth discussion. So, Jordana. Yeah, like it's been so long since we last spoke and I, you know, to start, why don't we start about how you would describe yourself? Like beyond the medical labels and the surgeries and all you've been through that could be considered negative.
How would you just describe yourself beyond all that.
[00:05:53] Speaker B: Beyond the medical labels, beyond.
Sorry, you said something that's not negative or it is negative.
[00:06:00] Speaker A: Well, just like, how would you describe, like just you yourself, beyond the medical labels and surgeries. Who is Jordana? How would you describe yourself?
[00:06:09] Speaker B: Well, you said it. I'm a mother, I'm a daughter, I'm a friend, I'm a laughaholic.
I laugh everything. I laugh sometimes at the most inappropriate times because that's just how I deal with things.
It's been a whirlwind, to say the least. And I use laughter as my mechanism to let out the stress that you feel on your chest when you have anxiety pouring down on you.
Sometimes all you can do is laugh. And I, I teach my son that as well. So when I would be frustrated, you know, in the toddler stage, we would have, like, little tickle fights and, you know, you just.
You feel better afterwards.
[00:07:00] Speaker A: Yeah.
And I, I must say, like, I. I showed your.
Your podcast description to my wife, who also had a thyroidectomy, and she just. She couldn't believe it. Like, she was shaking my head, shaking her head in disbelief for everything you have gone through. And she's got so much empathy for you and just sends you so much strength and for doing this. And so just know that, like, because I.
I can imagine. And not. Not knowing what you go through, I can only just try and put myself in your shoes and because I do that for. What's that?
[00:07:52] Speaker B: Sorry, did you want me to start the story? Because it's a very sort of complicated, convoluted story.
It gets to a point.
[00:08:03] Speaker A: Well, yeah, no, I was going to say, like, you've under. You yourself have undergone over 25 hours of surgery in just five years, which is, like, almost unheard of. That's.
And very. You know, not many people go through such a trauma.
Can you walk us through some of that journey and how it shaped you physically and. And emotionally?
[00:08:28] Speaker B: Yes, it started.
So it actually started when I was pregnant with my son.
I didn't have a really great pregnancy.
He was born.
He was born.
Technically, he was premature. He was a full term preemie.
So he was 35 weeks and five days inside and before a C section, and then he was 3 pounds, 5 ounces, which didn't make any logical sense because everything was going well. And then all of a sudden, in the last couple weeks, he just wasn't growing.
So the stress of him, not the stress of the whole situation, to be honest with you, having a baby in the NICU, having a baby that's 3 pounds, 5 ounces. And then my body all of a sudden started falling apart.
I know moms talk about that quite frequently. I think it's a topic of conversation that most moms don't feel comfortable talking about because it's a little bit taboo. Your body is a certain way, you have children, and then all of a sudden, it's not the same way.
So I went to the hospital one day. I had really bad stomach pain.
And as I was walking out, they said, wait a second, you actually have a. What they called an incidental tumor?
And it was in my groin and. And I had this pain in my groin for, I don't even know how long, years.
But the pain that I went into the hospital with had nothing to do with the pain in my groin. It was an accumulation of months and months and months of not taking care of myself because I had a new baby. I had to be home with my kid.
I was taking care of my mom at the time, who was hospitalized due to a stroke.
From complications to ms, it was a lot.
So I didn't have time to focus on me.
I was peeling pieces of myself in different directions to try to cover every angle.
So when the doctor told me it was an incidental tumor, I was like, I don't have time for that.
It's not important.
I have other stuff. I feel fine. I'm 35, I feel fine. I don't need this stress.
And then all of a sudden, a couple weeks later, I lost feeling in my leg and I wasn't walking properly. And it was a.
It started off in October of 2020, and I didn't get fully diagnosed with Cowden Syndrome for two and a half, almost three years.
I was fighting.
Sorry.
[00:11:48] Speaker A: So what is. Can you walk us through what Cowden Syndrome is? It's new to me. It might be new to our viewers or listeners. What is that exactly?
[00:12:01] Speaker B: It's a PTEN gene mutation.
So I was born with it my whole life.
I had learning difficulties.
I had cancer when I was really small.
I had an overly large head, which, you know, we always used to make jokes about, but, you know, it actually is one of the reasons why I have this disease.
And I did not know, and most people didn't know at the time, that the cancer that I had when I was five had to do with this Cowden syndrome.
The hemangioma that was in my groin, the incidental tumor was the size of my fist.
And I had gone through two different types of treatments, so sclerotherapy and radiation, to try to minimize the tumor in my groin, because I was partially paralyzed at the same time that I was going to the hospital every weekend, every single weekend, because I just. It wasn't there, was not. It didn't feel right. I was being pushed around by ER staff Because unfortunately, they didn't know how to handle a patient like me.
Thankfully, after a very diligent radiologist, radiology oncologist, who looked at my history and saw that I also had a brain tumor.
Now, the brain tumor stems from many years prior.
So he said to me, after an MRI on my groin, and at the time, it was radiation therapy, which is an other chapter to this story.
He said, I don't really like the fact that you haven't had an MRI in a long time. I'd like to take another look.
So I said, sure, why not?
We went to the mri.
I got called in maybe two weeks later. He said, look, I don't mean to scare you. Everything's fine. But you now have 14 brain tumors.
And so my husband and I were like, what do you mean, it didn't compute?
I'm a mom.
I'm a caregiver.
My husband, he doesn't have the kind of job he can take off. Months and months and months. Like, there's so many aspects to this situation that just didn't feel right. He said, don't worry.
It's a hemangioma. Sorry, a meningioma.
It's a different kind of tumor.
It's not growing fast.
I'm going to send you for genetic testing.
Genetic testing.
They came back. I was sitting on my. At my porch at the time with my dad, and the geneticist was going through all the lists, and she said, look, I'm really sorry to tell you this over the phone. This was in 2023, so hospital protocol was still a little different. They didn't. If they didn't need to see you, they weren't going to see you. They were just going to call you over the phone. That's still how a lot of offices operate.
She said, I'm sorry to tell you you have Cowden Syndrome. I said, I don't know what Cowden Syndrome is. It didn't make sense to me.
Cowden Syndrome is, as I said, a P10 gene mutation that, in a very long, drawn out explanation, even longer than what I just went through, it causes kidney cancer. It causes breast cancer, thyroid cancer, uterine cancer, and skin cancer, not to mention colonoscopies we have to go for very frequently. It can cause colon cancer and it can cause intestinal cancer.
I was so overwhelmed with this information, I didn't know what to do with myself.
And she said, look, I got you.
You have to tell your family.
Do you want to have your son tested?
I said, yes.
I didn't know if it was the right thing to do. I had my son tested. We had our son tested.
Thankfully, he is not positive. It's a 50, 50 shot. He is not positive.
I think it was.
Sorry.
[00:16:56] Speaker A: It's okay. It's okay.
[00:16:59] Speaker B: Six months after I was initially diagnosed, my dad decided that he was going to get tested.
They offered it to him.
He said, you know what? It's going to make you feel better. I'm going to get tested.
He had three different cancers at the exact same time.
If that doctor did not tell me, stop me that day and say, hey, I don't think it looks right that you haven't had an MRI in such and such time, I wouldn't have gotten my procedures done in time, and my father wouldn't have gotten his procedures done in time. So a very long explanation of how I got the diagnosis of Cowden syndrome.
[00:17:44] Speaker A: So did you have to do like radiation for all of these cancers that appeared or how did you manage that or overcome those cancers that showed up?
[00:17:56] Speaker B: It's a very good question. There's a very, There's. It's a multi layered issue, the physicality of it.
So, thankfully, I was very, very blessed. Even though I had all this surgery and radiation, I never had chemotherapy, never lost my hair, and I got very lucky with that. All my cancers were caught stage one, all of them, which is a miracle. That's why it's so stressful. This is like a whack a mole game. It's not, it's not fun, but it's constantly going for tests and ultrasounds, staying on top of blood work, making sure that your levels stay right.
My mother.
Sorry.
[00:18:44] Speaker A: You know, I was just gonna say you got. Were you able to get rid of the cancer or you have to keep going back for appointments to manage the blood and cancer levels so that it doesn't come back. Like, is it fully gone? All the ones that showed up because of condom syndrome.
[00:19:02] Speaker B: I'm cancer free, thankfully.
I know.
[00:19:06] Speaker A: Love to hear that. That's good. Did you get to ring like the bell at the hospital there? Like the.
[00:19:10] Speaker B: I didn't. I was very disappointed, I think, because I didn't have enough radiation treatments. Like, I had had like, I guess the smaller amount compared to some other people.
The bell was there. I. I said to my husband, I want to ring it. And he said, don't do that. So, yeah.
So I.
Because of this genetic disease, I was a part of the breast, the high risk breast clinic at Princess Margaret. And as I was waiting for a lumpectomy, the prophylactic mastectomy became available.
So I got very lucky again with my double mastectomy.
My doctors, Dr. Sill and Dr. Hoffer were amazing.
They took care of me very well. I ended up getting very sick afterwards. I had an infection in my abdomen that left me in the hospital for an accumulation of 33 days altogether within two months.
So it was six days, then home for a little bit, then 25 days, then home for a little Bit, then three more days.
[00:20:28] Speaker A: So like when all this is happening and you're in the hospital and constant checkups and such and having to revisit and stay obviously for a long term there, how did your family situation work out? Did your husband look after the kids? Did you have like extended family that would pitch in and help? What. Well, while you were going through all this.
[00:20:54] Speaker B: So my husband is my best friend. He slept on the bed. The. Not the bed. There was a chair. There was two chairs.
[00:21:03] Speaker A: Yeah.
[00:21:04] Speaker B: They put together and he would sleep on it every single night.
Help me to the bathroom because I was. I didn't want to bother the nurses.
I don't. I have nothing bad to say about nurses. I have lots bad to say about, you know, health care in general.
So he stayed there every night to make sure I was okay. They. They were okay with it. They. They let him stay there with me.
My mother in law took care of my son. I didn't see my son for two weeks, which was very hard on him.
Father, at the same time that I had been, I was hospitalized was dealing with renal cancer and he was, he just couldn't. He could. He.
It was only me being able to take care of myself that I could take care of him.
So it was a, it was a complicated time. It was a really complicated time. Yeah.
[00:22:10] Speaker A: But you're so, you're going back to obviously have checkups every now and then at.
For these conditions. Yeah. Just to make sure your levels are okay and such. Right.
[00:22:21] Speaker B: Everything right now is okay.
I have a really great geneticist, his name is Dr. Raymond Kim. He's at a Princess Margaret. He's incredible.
You know, I'm really lucky because I hadn't worked for a really long time and I started working for a really great company called Baby Rehab at their physiotherapy office. They're really awesome.
And I was really lucky to get a really good doctor, really good care once I was actually diagnosed. It took a really long time to get diagnosed properly. An incredible long time.
During that process.
It was more than 25 hours of surgery. The reconstructive surgery was just the 25 hours.
It took a really big toll on my family.
Luckily I have a very strong family.
If I didn't, I don't think I could have. I don't think I'd be here.
You know, my mother in law, my father, my husband, my sons, my two stepsons, they both, they came in from their respective homes to help me with my son, their brother.
I can't complain about my family. I can't complain about the healthcare practitioners that took care of me. I cannot complain about the nurses. They saved me.
I cry to them every single day.
It wasn't anything other than the hospital itself, the walls. It felt stale.
25 consistent days, 6 days and 25 days and 3. All 33 altogether. You just get exhausted from being around the hospital.
You're considered a frequent flyer. And how do you handle your mental health?
This, you know, loss of woman body parts, you know, really screwed with me. And not to say that you need those body parts to be a woman. I don't have them anymore. I'm still a woman.
But you don't expect it in the beginning to hit you as much as it does. Or at least for me, I, I thought I knew what I was getting myself into. I went to the bra. The BRA events I went to which is a breast cancer awareness event. They say.
Yeah to all of the, all of the workshops.
My husband came to, every single appointment. We thought we knew what we were doing.
It almost destroyed us, it almost killed us.
If it wasn't for our deep devotion to each other and to our family.
And by sheer luck because sometimes that doesn't. Isn't enough.
I know a lot of people who didn't have the same outcome as I did.
I'm very lucky to have the support that I have.
If it wasn't for mankind.
They are this, they are angels. They are true angels.
The organization is filled with people that just care about what they do.
They delivered meals for, I think it was 12 weeks when I was going through surgery and hospital stays. And they just said, hey, we know that you're not going to be able to focus on a good meal. Here's a good meal. Just open the door and somebody will deliver it to you.
Once a week I had somebody come in and just sit with my son while I took a nap.
Because sometimes I just needed to nap, like all day long.
On Wednesdays we would have group meetings with the most.
Rob, I'm telling you, I've never met people that were as amazing as these women are.
They are Filled with hope and determination and strength that the rest of the public just never see it. Yeah, I am blessed to know them. And I don't feel.
Sometimes I, you know, I feel complex feelings about not going through chemotherapy and being in this type of group, but they stop me at the door and say, hey, have you had this surgery?
Have you lost these body parts? You're in the group and you just feel like you're in a sisterhood that you never wanted to be a part of.
[00:28:06] Speaker A: Talk to me about the, about the, the scar that you have on your throat. I couldn't help but notice that if you're watching on YouTube, you might notice that as well. And it's something that my wife has as well. And it's very emotional, too, because that's very traumatic and very invasive and, hey, how dare you do that? Because rightfully so, the feeling afterwards, from my understanding, is not right and needs a lot more work to help people after. After the fact. Yeah, that right. Is that from thyroid?
[00:28:44] Speaker B: Yes.
Very keloided scar. And I, and I really like my, My surgeon, just.
[00:28:51] Speaker A: Doctor, are you allowed to say, yeah.
[00:28:53] Speaker B: Yeah, the excellent surgeon.
Really, really good and, and knowledgeable man. It's not, it wasn't his fault. It's just my skin. That's just the way it. It is.
That's why I, I wanted to mention my. Where I work right now, because I hadn't worked in, like 10 years.
Ten years, you know, taking care of my mom and then getting sick and being sick of myself and having this massive scar. You can't hide it. And these people, they said, hey, you're. You're good at what you do.
You.
You got a smile on your face. You can do the job.
You can't find that in today's day and age. They either think you can't do it or they're afraid you can't do it, or they, you know, they're, they're worried that, you know, there's excuses for, you know, the possibility of why you can't be, you know, at work.
I have, I've worked for doctors in the past who had that mentality. And I went in very worried and, you know, just the nicest people I've been around in a really long time.
And I think, you know, to what your wife was saying, I think it's really.
You have no choice but to say, hey, what world? This is me.
This is what I look like.
[00:30:28] Speaker A: And more, More than just the, the look itself, I'm talking more about what we don't see, what's invisible, but can be shown by our, let's say, emotions, how we feel, how it's a little bit more difficult to stay in control because you no longer have access to. That's like one of the most important.
It's an organ. Right? Thyroid. Yeah. Like to have to have that to get that you're not regulated. So if we think a regular person with a thyroid gets agitated sometimes yours to bring into awareness here is. Is times 10. Like so if you were to go on vacation in Cuba in the summertime and it's 40 degrees there, it's probably feeling like 65, 70 to you and that you're in like a sauna that you cannot get out of. And you probably could last a lot less time out on the beach than the average person could because you're. It's not regulated or you feel your agitation levels could be heightened because. And we're all have these level. We all have this sort of nuance or if we get. If we're being honest with ourselves, mastering our thoughts and emotions or just trying to stay regulated is probably one of the biggest, underestimated things that we as humans need to do daily just to get from one task to the next is stay regulated. Don't get too over.
What's the word I'm looking for? Don't get too attached to this emotion where you have to react to everything.
How do we hold back and take a deep breath for a second and be like, you know what? We're going to get through this. Just stay in the present moment.
This thing didn't end off well, but I got. I have to do this task and I'll think about this later. I'll mark it down and get back to it.
So for you, it's more challenging because yeah, like, you can't there.
You. You probably have issues sleeping in the middle of the night. Maybe you want to sleep during the day, but then you have. You struggle at nighttime or in the middle of the night sleeping. Right. And I see you nodding your head there because I know it's not easy. And. And I don't even have that. And I have issues. I've said before on. On episodes in the past or on an episode in the past that I struggle with sleep every now and then. And I. I can't imagine what it's like if you don't have that regulation. And so from my understanding, in order for you to function daily, you have to take this pill. Right. In order to.
[00:33:18] Speaker B: I'm on medications right now to I'm constantly Exhausted. It's a constant exhaustion. And it's not a little bit exhaustion, it's just this full on body.
If I don't, like, if I don't get my body to the chair, I might fall over.
[00:33:42] Speaker A: Right.
[00:33:43] Speaker B: That's how bad it gets sometimes.
I'm still on painkillers due to my reconstructive surgery, which I'm slowly getting off of.
And the combination just exhausts you.
[00:34:01] Speaker A: But yeah, and the patience and I mean, having a seven year old, you're probably your, your emotions and your.
[00:34:08] Speaker B: Sorry.
[00:34:08] Speaker A: Your state of regulation is challenged 247 because of this issue. And this is what I wish, you know, the medical community could sort of warn you. I don't know if they warned you. They didn't. They never warned my wife or my understanding to say like, hey, you know, it's just like you need a thyroidectomy, you got to get rid of your thyroid. But they don't tell you what the consequences are afterwards. You know, it's just like, you know, I'm not laug at that. I'm just saying that it's like it's, it's a terrible, like, how do you not give more of a heads up, more of a, you know, some research to pass along to your patients that this is what's going to happen. She sort of had to find that all out for herself after the fact. Right. And I think you probably, I really.
[00:34:55] Speaker B: Don'T blame any of the doctors. I don't. I really want to say my doctors have been top notch. Once you finally get in to see them, they're amazing. Yes.
[00:35:06] Speaker A: Yeah.
[00:35:06] Speaker B: It's the process, it's, it's. Sometimes they, you know, when you, when you have a conversation with somebody and you haven't seen each other in a really long time and you just go over all the important details in your life that you, you probably have mentioned 10 times over, but you know, this person hasn't seen you, so they probably don't know about it.
[00:35:31] Speaker A: Yeah.
[00:35:31] Speaker B: After a while you see the same person, you don't say the same stories over and over again. They just, sometimes they lose the ability to remember that these point A1, A1, B1C. They're all important.
And there's human error too.
My dad can attest to that.
There were organs. Let's just say there were organs that were miss.
He had a biopsy and they biopsied the wrong area.
[00:36:06] Speaker A: Okay.
[00:36:07] Speaker B: So you know, you know, you just.
There's human error.
[00:36:12] Speaker A: Yeah, there is. There is human error. And the only perfection is Imperfection. So I know they strive to do.
[00:36:19] Speaker B: Constantly be on top of it. You constantly have to kill them with kindness.
Always be on everybody's wait list, make friends with a receptionist. They, you know, they're used to being yelled at. They don't want to be yelled at. They want to. They're human beings too. They're. You're frustrated because it's frustrating, but, but they're frustrated too.
It's a really poopy system.
You've seen it time and time again.
I have worked as a patient, a full time patient, for the better part of five years and there's nothing that I haven't seen as a patient dealing with doctor's offices.
Nobody.
Sorry, go ahead.
[00:37:12] Speaker A: No, go ahead.
[00:37:12] Speaker B: Nobody's in the business of screwing over patients on purpose.
Yeah, but you just have to write everything down.
Chat et everything.
I, what I do is I, every time I get blood work, every time I get CT scan, MRI, I read chat, ChatGPT reads it for me, it PDFs it for me, and I save it.
Now I wish I was more organized and I had it in different body part categories, but I don't, But I'm trying to get better at that.
And it's just, it's, it's not fair that some people have to wait two years for surgery.
But that's where we are, right?
I think I got really lucky because I have a loud voice.
I think there's a lot of people that miss out on opportunities for surgery when they have conditions like I have and they sort of have to wait in the queue.
If you don't know how the system works, it sometimes takes longer. But then I also know plastic surgeon whose brother had cancer and he had to wait eight weeks, like flat out. So it doesn't work faster for them, which made me feel a little better, to be honest with you.
[00:38:57] Speaker A: So with living with these chronic conditions, including Cowan syndrome, I mean, fibro, fibromyalgia is chronic, right? Yes, it's considered, yeah, it's considered chronic. And the, the treatment, Resistant depression.
What do you wish more people understood about living with invisible illness?
[00:39:24] Speaker B: That it can happen to anybody at any time and nobody's immune to anything.
And that we have to enjoy every single day.
And even if we enjoy it for 5% of the day, it's still, we're still lucky to have this day in front of us.
Even with all that pain that I have, even with all the limitations that I have, I'm still extremely grateful for every, everything that I have.
I'm cancer Free.
[00:40:03] Speaker A: Yeah. Which is incredible. Which is fantastic.
So you've started documenting your life for your son.
You told me off of the air, off this episode.
And so you started documenting your life for your son and future generations.
What do you think inspired that inside you, and what do you hope this record will offer him one day?
[00:40:33] Speaker B: I have suffered from pretty severe depression my entire life, and my son, who is wonderful and just a beam of light, is, as they call him, a super feeler.
And I want him to know that no matter what, his feelings are valid, his emotions are valid, and I want him to see that mom goes through these ups and downs, and I still have a smile on my face. I still can appreciate the small things, which I hate when people say to me, but it's really true.
That's what helps. Pain. Our pain is associated.
Well, my pain is associated with trauma.
And I, I don't know, it's just a.
We try as parents to just be better than our parents were to us. You know, it's just right.
Trying to do things that you want yourself. You wanted as a kid to be done for you. And I try to do that for my kid.
And I, I, you know, it was sucky for him to have a sick mom. It's still sucky for him to have a sick mom. It's hard on him.
And so if I can make anything just slightly easier for him, I'm gonna do it especially for him. I have two stepsons that are incredible.
You know, they're.
They're the reason why I get up in the morning. That's my family. Them and my, My husband.
[00:42:47] Speaker A: When you're in the thick of it, though, like, you know, on, On.
On those really dark days, the hardest days, what helps you keep going?
[00:43:02] Speaker B: Statistically, if somebody loses their, like, other.
[00:43:10] Speaker A: Than your, you know, your kids, obviously, like, they. That's what makes you wake up in the morning. Obviously. Is there, Is there any.
That's your purpose, is your. Is to be the best mom you can be and enjoy the work you do, basically.
[00:43:23] Speaker B: Also, all the people in my life, too, because, yeah, they would be messed up, too if I, if, If I lost my battle. And I, And I do. And I do that for the people that I'm friends with. I, I, I do it for my son. I do it for my husband. Yeah. Honestly, every day sucks.
But I have to sift through that to the positivity that I'm walking and I can go to the bathroom by myself, and I can put clothes on by myself, and I have a job for the first time in 10 years I have a job.
[00:44:04] Speaker A: Congratulations. That's amazing.
[00:44:06] Speaker B: I'm free, you know, so it's the small things. Yeah. I don't have Fortune 500 company.
I, you know, I'm working with small stuff here, but that's okay.
[00:44:22] Speaker A: So for others living with chronic illness like yourself or caregiving responsibilities, to what words of encouragement or advice would. Would you share?
[00:44:37] Speaker B: Take the time to rest when you can.
It's not your fault.
And this moment will not last forever.
[00:44:53] Speaker A: Will not last forever. Yeah, it's a good one. And just that, I mean it's, it's not easy because people are. What we're trying to do here is. Yeah. Build awareness as to what others are going through. Invisible. And it's like, it's. It's like that famous saying, like, you know, you never know what.
What kind of battle anyone. We're all fighting a battle, but it's invisible. And that's why just be kind as much as you can.
The. I think for your sake and for a lot of people that go through this with the chronic illness in the family, whether it's the spouse that, that doesn't have what you have is really learning to become aware of your emotions and that patience is your number one fan. Like if you have patience on your side, that can go a long way for family matters in the family.
[00:45:59] Speaker B: And also respect for the caregiver.
Respect for the caregiver. Respect for the caregiver and respect for the caregiver. It's hard to be on both sides of the coin. I have been on both sides. It's not fun.
And it is important to remember that we all end up on, on that side no matter what.
The best that we can do is hope that the people that are around us are the ones that are going to care for us the way that we need to be cared for.
[00:46:32] Speaker A: It's a good way to put it for sure. Well, listen, shout out to you for doing this and, and opening up and trying to help others and just the release of speaking about your story, I hope just for yourself you find therapeutic because that's what I try to do with this is to give the, the outlet to others to talk about what they've been through and, and just if there's anything that you can mention that can help others what you have and, and that people can relate. Maybe just even the fact of knowing that they're not the only one. There are others out there that are going through the same thing they are and just to take away that lonely aspect that they may think they're the only one, but they're not. Everyone's. Everyone's fighting a different battle. And you've been great with.
With sharing your story and offering up support. So good on you for. For doing that today. You're. Yeah.
Fantastic for doing that. I know it's not easy, and you've been through so much, and I just. I just wish you peace and health and happiness with your family. I've seen some of your Facebook posts and.
And it's, you know, it's a true mirror image. Of what? Of just speaking with you today. It's exactly who you are. You don't try and put on a show. You. You show what means to you the most. Your son, your. Your husband.
I think I mentioned. He mentioned or you mentioned that he's your rock on. On certain Facebook posts and we, you know, couldn't do certain. Get through certain situations without him.
And that's, you know, it's a big thing. You want to be close with your spouse, so.
Good for you. Good for you. For. For opening up today and for.
And trying to spread awareness. So thank you.
[00:48:24] Speaker B: Thank you.
[00:48:28] Speaker A: Jordana. Amazing. She's.
You know what? And I, I felt embarrassed about this. I thought maybe I should probably talk to you before we. And. But you're.
When I want to say your last name.
Okay. Jordana Bilo.
[00:48:48] Speaker B: I'm sorry if I, of course, I.
[00:48:49] Speaker A: Of course know you as Jordana Beer and Bomb.
Yeah. That's how I fully know you. So you know. But Jordana by Bylo. And thank you so much again for. For doing this. You can rest assured that you have helped many others here today. So awareness, episode number 19 with Jordana Bilo. And I'm Rob Daniels. Thank you so much for being here, listening, watching. Wherever you get your podcasts, don't forget to like and subscribe. That would certainly mean a lot. And let's keep these meaningful episodes coming for producer Mike. My name is Rob Daniels. I'll catch you.
[00:49:28] Speaker B: Yeah.
[00:49:29] Speaker A: The next episode.
