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The Complex Medical Mama: Caregiving, Advocacy, and Seeing Healthcare Through a Different Lens · Amplify: A Podcast Powered by Patient Voice Partners

• 0:01
  SPEAKER_01: Welcome to Amplify, Elivating Patient Voices, a podcast powered by patient voice partners, where real stories spark bold conversations.
• 0:10
  SPEAKER_01: I'm Ursula Mann.
• 0:12
  SPEAKER_00: And I'm Brent Cordy.
• 0:14
  SPEAKER_00: Together, we're talking with patients, caregivers, and the healthcare change makers who are listening and taking action.
• 0:21
  SPEAKER_01: From personal journeys to policy shifts, these are the voices shaping a healthcare system that listens.
• 0:32
  SPEAKER_04: I'm here today with my co-host Anne-Marie, and we're going to be talking to a fantastic person in the area of patient engagement and leadership and a real change maker, Julie Croner.
• 0:44
  SPEAKER_04: Julie is going to talk about her personal health journey.
• 0:47
  SPEAKER_04: And in her personal health journey, there is management of herself with psoriatic arthritis, a vascular necrosis, and some other diagnoses, which I'm going to get to in just a sec.
• 0:58
  SPEAKER_04: She's also a mama and she calls herself a complex medical mama.
• 1:02
  SPEAKER_04: So we're going to talk a little bit about that.
• 1:04
  SPEAKER_04: And through this personal journey, there has been involvement and influence into what she wanted to do in her work life.
• 1:12
  SPEAKER_04: And Rhee, I'm going to talk a little bit more in a sec about all the diagnoses Julie is facing and a little bit of background.
• 1:18
  SPEAKER_04: But what were your thoughts as you were thinking of today's show?
• 1:21
  SPEAKER_02: Thank you, Ursula.
• 1:23
  SPEAKER_02: When I meet people like Julie, one of the things that really pops into my mind is that the equation seems a little unbalanced when we continually in our current healthcare system place the burden of advocacy on the people whose energy really is, it needs to go to just getting through every day dealing with what they're dealing with, but yet we place the burden on them to do the hard work.
• 1:48
  SPEAKER_02: And when I meet people like Julie, there's rarely any complaining about it, but it strikes me as a little bit unbalanced.
• 1:54
  SPEAKER_02: So I'm really curious to get her perspectives on some of this today.
• 1:58
  SPEAKER_04: I appreciate that.
• 1:59
  SPEAKER_04: People are thrown in to this situation.
• 2:01
  SPEAKER_04: Nobody asks for this diagnosis.
• 2:04
  SPEAKER_04: And you're learning on the fly at the same time that you're dealing with so much.
• 2:09
  SPEAKER_04: And Julie really is an incredible patient leader, and we're going to get into this.
• 2:13
  SPEAKER_04: She's also the vice president of community development at Health Union and is a mom of four kids.
• 2:20
  SPEAKER_04: So I'm going to start a little bit with her personal journey because it's complicated.
• 2:24
  SPEAKER_04: We're going to talk today about psoriatic arthritis, which happened to Julie at a very young age.
• 2:29
  SPEAKER_04: Now, psoriatic arthritis is a chronic autoimmune condition that causes joint pain, inflammation, and stiffness.
• 2:38
  SPEAKER_04: And this does usually happen between the ages of 30 to 55, but in Julie's case, it was quite a bit younger.
• 2:46
  SPEAKER_04: So symptoms of this as something complicated called dactylitis, but it really is painful, severe swelling of fingers and toes.
• 2:54
  SPEAKER_04: There's inflammation at the exact spots where tendons and ligaments attach to the bones.
• 2:58
  SPEAKER_04: This is commonly in the heel.
• 3:00
  SPEAKER_04: There's nail changes.
• 3:01
  SPEAKER_04: There can be eye inflammation, and family history can pop into this as well.
• 3:06
  SPEAKER_04: So there's a lot happening on the psoriatic arthritis side.
• 3:10
  SPEAKER_04: Now, often this is going hand in hand with the majority of people with something called psoriasis as well and skin plaques.
• 3:18
  SPEAKER_04: But in Julie's case, this was independent.
• 3:21
  SPEAKER_04: Psoriatic arthritis is something that she's been dealing with.
• 3:24
  SPEAKER_04: That's not all she was dealing with in her life.
• 3:26
  SPEAKER_04: And what happened as stuff went on, which we're going to talk about, is something called avascular necrosis, which to put simply is when blood flow to a bone is disrupted, causing bone tissue to die and potentially leading to joint collapse.
• 3:42
  SPEAKER_04: She also faced melanoma, skin cancer, and after the avascular necrosis, complex regional pain syndrome, which is a rare chronic neurological condition that causes severe prolonged pain and depression and anxiety alongside all of this, which I can certainly understand.
• 4:01
  SPEAKER_04: And some of these other areas actually predispose people to depression, anxiety.
• 4:06
  SPEAKER_04: And this is all before being a complex medical mama.
• 4:10
  SPEAKER_04: So, Anne-Marie, any final thoughts on all of that before we welcome Julie to the show?
• 4:15
  SPEAKER_02: I'm just grateful she has agreed to spend some time with us because it sounds like she's got all on her plate.
• 4:22
  SPEAKER_02: It certainly does.
• 4:23
  SPEAKER_02: Thank you, Julie.
• 4:25
  SPEAKER_04: I have to say that as well.
• 4:27
  SPEAKER_04: And the time I've known Julie, she always has a smile on her face, which makes me smile in return.
• 4:33
  SPEAKER_04: She is energetic and positive and just a really incredible person that I've been so fortunate to be able to engage with.
• 4:42
  SPEAKER_04: So, Julie, welcome to today's show and we're delighted to have you here.
• 4:45
  SPEAKER_03: Thank you.
• 4:45
  SPEAKER_03: You're gonna make me tear up before we even start talking.
• 4:48
  SPEAKER_03: I appreciate it.
• 4:49
  SPEAKER_03: Thanks for having me.
• 4:50
  SPEAKER_04: So, Julie, take us back to what happened when you were quite little and some of the symptoms you started facing.
• 4:57
  SPEAKER_03: Yeah.
• 4:57
  SPEAKER_03: So I was really into dance and softball.
• 5:01
  SPEAKER_03: And so I'll take you back to the time period I was in elementary school.
• 5:05
  SPEAKER_03: And I started having a lot of knee pain.
• 5:07
  SPEAKER_03: So my mom took me to the doctor, and at first it was pushed off, but then realized that my meniscus was ripped, flipped, and separated from the bone.
• 5:17
  SPEAKER_03: So we thought it was just maybe a one-off issue that was caused by dance or something like that.
• 5:24
  SPEAKER_03: But as the year started to go on, every year I had problems.
• 5:27
  SPEAKER_03: Every year I was in physical therapy or I was on crutches or I had some kind of brace.
• 5:31
  SPEAKER_03: Just my knee was just not right.
• 5:34
  SPEAKER_03: It just wasn't a normal knee.
• 5:36
  SPEAKER_03: So I had my first surgery in fifth grade.
• 5:38
  SPEAKER_03: Middle school had issues.
• 5:40
  SPEAKER_03: In high school, I had two more knee surgeries.
• 5:43
  SPEAKER_03: And throughout that journey, I had just been going to an orthopedic surgeon because I was like, oh, my knee hurts, right?
• 5:50
  SPEAKER_03: My knee hurts.
• 5:50
  SPEAKER_03: I wasn't thinking systemically.
• 5:52
  SPEAKER_03: During these years, the ortho that I was going to was like, there might be something else going on.
• 5:57
  SPEAKER_03: You should see a rheumatologist.
• 5:59
  SPEAKER_03: So I went and saw a rheumatologist and they did all the typical blood work and they said, okay, you don't have RA, you don't have this, you don't have that.
• 6:06
  SPEAKER_03: You probably have psoriatic arthritis, but I don't have a definitive test for it.
• 6:12
  SPEAKER_03: And there are no treatments approved for adolescent use.
• 6:16
  SPEAKER_03: This was in the 90s.
• 6:18
  SPEAKER_03: So biologics really had just hit the scene and they weren't indicated for children yet.
• 6:22
  SPEAKER_03: So they were like, if it went things pop up, just treat it with steroids.
• 6:27
  SPEAKER_03: So I'm young and I hear this storiatic arthritis, and I'm like, I don't have arthritis.
• 6:34
  SPEAKER_03: I'm not a grandma.
• 6:35
  SPEAKER_03: Like I'm young.
• 6:36
  SPEAKER_03: Like I don't have this.
• 6:38
  SPEAKER_03: And I remember having so many fights with my mom because my mom would be like, Julie, they said you have this.
• 6:44
  SPEAKER_03: And I'm like, I don't have this.
• 6:45
  SPEAKER_05: Interesting.
• 6:46
  SPEAKER_03: We fought so much.
• 6:47
  SPEAKER_03: I have since apologized to her.
• 6:49
  SPEAKER_03: You felt they were wrong.
• 6:51
  SPEAKER_03: Yeah, right.
• 6:51
  SPEAKER_03: And the years went on, and I had a lot of different issues.
• 6:55
  SPEAKER_03: I had digestive issues.
• 6:56
  SPEAKER_03: I had my knee issues.
• 6:58
  SPEAKER_03: And I just took them as they came.
• 7:00
  SPEAKER_03: But really, they came to a head when I was in my late 20s.
• 7:04
  SPEAKER_03: I was working, I was traveling, my knees started swelling up again.
• 7:08
  SPEAKER_03: And that's really where I ended up landing in the hospital because I was in so much pain to the point where I was just shaking.
• 7:15
  SPEAKER_03: I couldn't stop shaking.
• 7:17
  SPEAKER_03: And my rheumatologist I have now came into the room and was like, you definitely have psoriatic arthritis.
• 7:22
  SPEAKER_03: So I'm like, okay, mom, sorry.
• 7:23
  SPEAKER_03: I do.
• 7:25
  SPEAKER_03: And at that point, I also had developed a vascular necrosis.
• 7:29
  SPEAKER_03: Now, I'm not exactly sure how I developed it.
• 7:32
  SPEAKER_03: I know that sometimes it can develop from steroid use, but I use steroids minimally.
• 7:38
  SPEAKER_03: I know there are some arthritic patients who are continuously on them.
• 7:42
  SPEAKER_03: That wasn't something that I was always on.
• 7:45
  SPEAKER_04: Interesting.
• 7:46
  SPEAKER_03: And I wonder if that year that I developed AVN, I had two back-to-back knee surgeries.
• 7:52
  SPEAKER_03: And I wonder if just the trauma from all of that, if something happened, I just, I don't know, I'll never know.
• 7:57
  SPEAKER_03: But basically in my left femur bone, two parts of it died.
• 8:01
  SPEAKER_03: And I'll always remember it was December 17th.
• 8:05
  SPEAKER_03: And my doctor came in after months of me saying something's wrong, something's wrong.
• 8:09
  SPEAKER_03: And he was like, Nothing's wrong, nothing's wrong.
• 8:11
  SPEAKER_03: He said, Oh, you have avascular necrosis.
• 8:13
  SPEAKER_03: I've seen it before.
• 8:14
  SPEAKER_03: I don't really know how to treat it, and I don't really know where to send you.
• 8:18
  SPEAKER_03: Good luck.
• 8:19
  SPEAKER_03: And I was really upset.
• 8:21
  SPEAKER_04: That's not helpful information.
• 8:23
  SPEAKER_03: Not at all.
• 8:24
  SPEAKER_03: And he said, You're probably gonna need a knee replacement.
• 8:28
  SPEAKER_03: They last about 10 years.
• 8:30
  SPEAKER_03: And I started doing the math and I thought, okay, I'm 26, 27 years old.
• 8:34
  SPEAKER_03: If they last 10, 20 years.
• 8:35
  SPEAKER_04: That's a lot of replacements.
• 8:37
  SPEAKER_03: And am I gonna be able to walk when I'm older?
• 8:40
  SPEAKER_03: So I was really upset for a while.
• 8:43
  SPEAKER_03: Obviously, went onto social media, started Googling avascular necrosis, A V N.
• 8:48
  SPEAKER_03: If you look up AVN, you get adult video news, which is not what I was looking for at all.
• 8:54
  SPEAKER_03: Oh, that's awkward.
• 8:55
  SPEAKER_03: Okay.
• 8:56
  SPEAKER_03: Always know what the acronym is.
• 8:57
  SPEAKER_03: Wrong search.
• 8:58
  SPEAKER_03: Exactly.
• 8:59
  SPEAKER_03: So after these diagnoses, I went online and I really started finding the patient community online.
• 9:05
  SPEAKER_03: At that point in my life, I loved social media.
• 9:08
  SPEAKER_03: Facebook came out when I was in college.
• 9:09
  SPEAKER_03: So I was a big Facebook person.
• 9:12
  SPEAKER_03: But it was really depressing for me to be on Facebook because all of my friends were living their life and traveling, and I was in my parents' basement on crutches.
• 9:22
  SPEAKER_03: After I got the AVN diagnosis, I didn't walk on my leg for three and a half years.
• 9:26
  SPEAKER_03: So it was really depressing.
• 9:27
  SPEAKER_03: So I actually went on Twitter and started finding all of these Twitter chats that were patient-led.
• 9:33
  SPEAKER_03: And through them, I found a lot of information about psoriatic arthritis, which really helped me transform my life.
• 9:40
  SPEAKER_03: I did a huge overhaul of my life and it got me back to a healthier state.
• 9:46
  SPEAKER_03: But they also helped me find a stem cell procedure that I ended up regrowing my femur bone so that it solidified it and I was able to continue to walk.
• 9:56
  SPEAKER_03: So the patient community basically saved my life and got me back to walking, literally.
• 10:02
  SPEAKER_02: And this is a really important thing, I think.
• 10:04
  SPEAKER_02: And I am a healthcare professional as well as a patient advocate.
• 10:08
  SPEAKER_02: In the healthcare profession, we worry so much about the proliferation of patient-led information and is it accurate and are people going to be getting the right information and whatnot?
• 10:20
  SPEAKER_02: But the truth is there's a perspective and an expertise that only the patient community has that it really needs to go hand in glove with the information we provide as medical providers.
• 10:31
  SPEAKER_02: It's not one or the other, is it?
• 10:33
  SPEAKER_03: No, I totally agree.
• 10:35
  SPEAKER_03: I totally agree.
• 10:36
  SPEAKER_03: And I went to 28, 29, 30 different providers looking for information about my AVN.
• 10:43
  SPEAKER_03: Now, for my psoriatic arthritis, I got with a rheumatologist who I still am with now.
• 10:48
  SPEAKER_03: I love her.
• 10:49
  SPEAKER_03: She has been in my corner from day one.
• 10:51
  SPEAKER_03: But with the AVN, I really had to go and search for this information.
• 10:55
  SPEAKER_03: And everyone that I went to would say, you're too young for a knee replacement.
• 11:00
  SPEAKER_03: You have to wait.
• 11:01
  SPEAKER_03: And I'm like, I'm in my late 20s and I can't walk and I'm not living my life.
• 11:05
  SPEAKER_03: Like, how is that okay?
• 11:07
  SPEAKER_03: And I walked in or crutched into this top top, or those doc office.
• 11:12
  SPEAKER_03: And his best advice was just walk on your knee until it completely collapses, and then we'll do a knee replacement.
• 11:19
  SPEAKER_03: And I'm like, I am in so much pain that I ended up developing complex regional pain syndrome.
• 11:25
  SPEAKER_03: My whole left side of the body was just going crazy.
• 11:29
  SPEAKER_03: Like when I would lay in bed at night and pull a sheet over myself, the weight of the sheet on my leg and my left side of my body would drive me nuts.
• 11:38
  SPEAKER_03: It hurt so bad.
• 11:39
  SPEAKER_03: I was in such an awful state.
• 11:41
  SPEAKER_03: And nobody was giving me the information.
• 11:43
  SPEAKER_03: But the patient community was giving me validation and support, which was everything I needed.
• 11:49
  SPEAKER_03: And then I would find information from them and take it back to my doctor.
• 11:54
  SPEAKER_03: So I quickly realized that I needed to be a driver in my health.
• 11:59
  SPEAKER_03: I couldn't sit back and just rely on doctors and that it needed to be a partnership.
• 12:04
  SPEAKER_03: So in my professional life, at that time I was working as a consultant.
• 12:09
  SPEAKER_03: So what I did was like put on my consultant hat.
• 12:13
  SPEAKER_03: And for six months, I tracked everything that I did eight, who I saw, who I talked to, what kind of appointments I had, how many steps I took, how I felt.
• 12:22
  SPEAKER_03: I made my own pain scale.
• 12:24
  SPEAKER_03: I gathered all this data.
• 12:26
  SPEAKER_03: And then I created bar graphs and pie charts and all of these things to figure out triggers and how I was feeling.
• 12:33
  SPEAKER_03: I printed them all off.
• 12:34
  SPEAKER_03: I made packets and I sent them to all my doctors.
• 12:37
  SPEAKER_03: And I wish I could have seen the look on most of their faces.
• 12:40
  SPEAKER_03: They were probably like, what the heck is this?
• 12:42
  SPEAKER_04: when they got this to say, wow, this is a lot of information.
• 12:46
  SPEAKER_04: And Julie, that message they gave you, and I've heard this before in my personal life, and it's so frustrating.
• 12:52
  SPEAKER_04: We just need you to get worse before we want to help you get better.
• 12:56
  SPEAKER_04: It's so gut-wrenching and it's not helpful whatsoever.
• 13:01
  SPEAKER_04: And amidst all of this, as you're putting together these packages, tell us when you realized depression and anxiety were part of your life.
• 13:10
  SPEAKER_04: And when did that come into play?
• 13:12
  SPEAKER_03: I got the avian diagnosis in December and I spent several months in bed eating ice cream because that was what made me happy.
• 13:20
  SPEAKER_03: And I was living this good lifestyle.
• 13:22
  SPEAKER_03: I was a consultant.
• 13:23
  SPEAKER_03: So I traveled every week and I traveled everywhere.
• 13:26
  SPEAKER_03: And to go from that to zero was really hard.
• 13:30
  SPEAKER_03: That I started having panic attacks.
• 13:32
  SPEAKER_03: Where if I had to go to the doctor's office, if I was going to take a shower to go to the doctor's office, I had to take a shower the night before because I would get in the shower and my whole body would just, I felt like I was having a heart attack.
• 13:43
  SPEAKER_03: I would have a horrible panic attack and I would not want to leave the house, which was not me, which was absolutely not me.
• 13:50
  SPEAKER_03: So I really had trouble with it.
• 13:52
  SPEAKER_03: And at that point, I had said to my rheumatologist, I need help.
• 13:56
  SPEAKER_03: I need some things.
• 13:57
  SPEAKER_03: I got a therapist, but then I also went to a psychiatrist for a while just to get my body back into some kind of regulation, which really helped.
• 14:06
  SPEAKER_03: And honestly, that therapist that I had, I credit her a lot for getting me on a mental path that really helped me dig myself back out of that hole that I had in.
• 14:17
  SPEAKER_03: I always say, like, whenever someone gets an autoimmune diagnosis, they should also get a lifelong script for physical therapy, regular therapy.
• 14:26
  SPEAKER_02: 100%.
• 14:27
  SPEAKER_03: Because you need to exercise your body and your mind.
• 14:30
  SPEAKER_03: They all work in one.
• 14:32
  SPEAKER_04: Yeah.
• 14:32
  SPEAKER_04: And we have the data.
• 14:34
  SPEAKER_04: We know how predisposed people are with different diseases to having this.
• 14:39
  SPEAKER_04: And it doesn't get noticed, it gets brushed aside.
• 14:42
  SPEAKER_04: And I am so happy to hear you knew that and you had the courage to ask for help at the right time to say, I need support on this to put yourself on a different trajectory because that's so important.
• 14:54
  SPEAKER_04: And then amidst all of this, you had also shared melanoma popped up.
• 14:59
  SPEAKER_04: So you had skin cancer that you had to manage.
• 15:02
  SPEAKER_04: Tell us a little bit about that.
• 15:03
  SPEAKER_03: Yeah.
• 15:04
  SPEAKER_03: Ever since I was in college, my dad and I always went and got our yearly skin checks.
• 15:10
  SPEAKER_03: We have a lot of moles.
• 15:11
  SPEAKER_03: I just always wanted to get them checked.
• 15:13
  SPEAKER_03: So during all of this, I had started on biologic.
• 15:16
  SPEAKER_03: I went for my yearly check, and right on my abdomen, just out of view, I never really even saw it, was a mole that she ended up taking off and tested for melanoma.
• 15:27
  SPEAKER_03: Luckily, it was very early.
• 15:30
  SPEAKER_03: So we were able to just remove it.
• 15:32
  SPEAKER_03: I didn't have to do any therapy after that, but it was just another punch to the gut where I had all these things were already going on.
• 15:42
  SPEAKER_03: And to just have one more thing, it just really sucked.
• 15:46
  SPEAKER_03: What's interesting though about that is I found out that I had it.
• 15:51
  SPEAKER_03: And my parents had scheduled a trip to Florida the following week.
• 15:56
  SPEAKER_03: It was already on the book.
• 15:58
  SPEAKER_03: And typical Julie would have been so excited because I love to go places, but I was so worried.
• 16:04
  SPEAKER_03: I was so nervous.
• 16:05
  SPEAKER_03: I was just so riddled with anxiety, I didn't want to go.
• 16:09
  SPEAKER_03: And I even remember being on the plane, riding in my iPad, just journaling, like, I wish I wasn't even going on this trip.
• 16:15
  SPEAKER_03: This is a bad idea.
• 16:16
  SPEAKER_03: I just wish I was laying in bed.
• 16:18
  SPEAKER_03: And we went and we were in clear water.
• 16:22
  SPEAKER_03: And my parents know I love Disney.
• 16:25
  SPEAKER_03: So they surprised me one day and we're like, hey, we're gonna go up to Disney for a day.
• 16:29
  SPEAKER_03: So we went.
• 16:30
  SPEAKER_03: Disney is amazing, right?
• 16:32
  SPEAKER_03: And it was great.
• 16:32
  SPEAKER_03: And they saw how I lit up and just I got really excited again.
• 16:36
  SPEAKER_03: And I was kind of saw the old Julie.
• 16:39
  SPEAKER_03: So we were only gonna go a day, but they said, Hey, do you want to go two days?
• 16:42
  SPEAKER_03: So we ended up going to Hollywood Studios and they had the American Idol experience there.
• 16:46
  SPEAKER_03: And I loved American Idol.
• 16:48
  SPEAKER_03: I grew up singing and I had always wanted to go.
• 16:50
  SPEAKER_03: So we went and just picture this.
• 16:54
  SPEAKER_03: I had been in bed in my parents' basement for six months.
• 16:57
  SPEAKER_03: I had panic attacks trying to go to the doctors.
• 17:00
  SPEAKER_03: But we walked in and I was like, I'm singing in this show.
• 17:03
  SPEAKER_03: I'm doing it.
• 17:04
  SPEAKER_03: I'm going.
• 17:05
  SPEAKER_03: I love it.
• 17:06
  SPEAKER_03: Oh, that's amazing.
• 17:08
  SPEAKER_03: So my parents were like, okay, okay.
• 17:11
  SPEAKER_03: So I go, I try out, I get cast in the last show of the day.
• 17:15
  SPEAKER_03: I get up there and I have my crutches and I'm singing.
• 17:19
  SPEAKER_03: And it was the first moment where I was just like, okay, Julie's still in here.
• 17:24
  SPEAKER_03: I'm still the same person, even with all of these diagnoses and all this crap that has come in the last year.
• 17:30
  SPEAKER_03: I can still live this great life.
• 17:32
  SPEAKER_03: So I ended up winning the show.
• 17:34
  SPEAKER_03: And it was just like, oh my gosh, it was just such an amazing thing.
• 17:38
  SPEAKER_03: So the next day I was sitting on the beach just decompressing from what had happened.
• 17:44
  SPEAKER_03: And it was at that moment where I thought, I'm going to start a blog.
• 17:48
  SPEAKER_03: I'm going to start sharing my story.
• 17:49
  SPEAKER_03: I'm going to get it out to everybody.
• 17:52
  SPEAKER_03: Even if I impact one person, it'll be worth it because there's so many patients that I have been connecting with that have been helping me.
• 18:00
  SPEAKER_03: My parents snapped a picture of me on the beach there.
• 18:03
  SPEAKER_03: And that was the picture I used for the longest time on my blog.
• 18:06
  SPEAKER_03: So that actually was where I started my platform.
• 18:10
  SPEAKER_03: And that next week I came back and I had the melanoma removed.
• 18:13
  SPEAKER_03: And luckily that was that part of the story.
• 18:16
  SPEAKER_03: But I still go yearly to make sure that it doesn't come back.
• 18:20
  SPEAKER_03: I need to know what song.
• 18:21
  SPEAKER_03: Independence Day by Martina McBride, which also I didn't realize at the time, but like thinking back, I'm like, that was my independence day, like getting my independence back.
• 18:32
  SPEAKER_03: Like I had been laying in bed a slave to these diagnoses.
• 18:36
  SPEAKER_03: And then I'm like, nope, I'm coming back.
• 18:38
  SPEAKER_04: Julie, that's incredible.
• 18:40
  SPEAKER_04: So life continued.
• 18:42
  SPEAKER_04: You got married.
• 18:44
  SPEAKER_04: You have four kids now.
• 18:46
  SPEAKER_04: And you have told me you're a complex medical mama.
• 18:50
  SPEAKER_04: And we've chatted about being a caregiver.
• 18:52
  SPEAKER_04: Tell us about your little one.
• 18:54
  SPEAKER_04: And when you noticed with one of your kids something was wrong and what was happening.
• 18:59
  SPEAKER_03: As you just said, I have four kids and all very close in age, about two years apart from each other.
• 19:04
  SPEAKER_03: Not busy at all, hey?
• 19:06
  SPEAKER_03: No, no, not at all, not at all.
• 19:08
  SPEAKER_04: No, lots of free time.
• 19:09
  SPEAKER_04: Got it.
• 19:10
  SPEAKER_03: Do you girls, two boys?
• 19:11
  SPEAKER_03: And my youngest, she is two now, two and a half.
• 19:15
  SPEAKER_03: When I was pregnant with her, we went to the ultrasound.
• 19:18
  SPEAKER_03: They said her femurs are short and she's missing bones in her pinky fingers.
• 19:23
  SPEAKER_03: This could be an indication of a genetic issue.
• 19:25
  SPEAKER_03: Did you get genetic testing?
• 19:26
  SPEAKER_03: And honestly, I didn't get it with any of my kids.
• 19:30
  SPEAKER_03: I just didn't.
• 19:31
  SPEAKER_03: But I went back and I got it done.
• 19:33
  SPEAKER_03: And for a while, for a few weeks, they had me really worried that she had a genetic condition to the point where the next ultrasound that I went into, they said, Hey, if you want to terminate this pregnancy, you need to decide ASAP.
• 19:47
  SPEAKER_03: And I turned to my husband and I thought, is this really serious?
• 19:50
  SPEAKER_03: I didn't even get my genetic testing back.
• 19:52
  SPEAKER_03: And they're like saying that we might need to terminate this.
• 19:55
  SPEAKER_03: There were a lot of emotions.
• 19:57
  SPEAKER_03: And I'm pregnant.
• 19:58
  SPEAKER_03: I have three other kids.
• 19:59
  SPEAKER_03: You can imagine I was kind of in a crazy state.
• 20:02
  SPEAKER_03: The next day after that appointment, I get the genetic testing back clear.
• 20:06
  SPEAKER_03: Nothing came up.
• 20:07
  SPEAKER_03: And I was like, okay.
• 20:08
  SPEAKER_03: They said, just continue to do some ultrasounds just to make sure everything's growing appropriately.
• 20:13
  SPEAKER_03: So I went back a couple weeks later, and this doctor was like, I think your baby's just small.
• 20:19
  SPEAKER_03: I don't see anything wrong.
• 20:20
  SPEAKER_03: Just put your head down.
• 20:21
  SPEAKER_03: Don't talk to any other doctors and have this baby.
• 20:23
  SPEAKER_03: So I said, okay.
• 20:24
  SPEAKER_03: And all my children are very small.
• 20:26
  SPEAKER_03: My third, he's been 1% on the chart his whole life.
• 20:30
  SPEAKER_03: So I had her and her fingers came out fine.
• 20:34
  SPEAKER_03: There's no missing bones, whatever.
• 20:36
  SPEAKER_03: She came out perfectly proportioned.
• 20:38
  SPEAKER_03: She was like 18 and a half inches long, which was about what all my other kids were.
• 20:42
  SPEAKER_03: But she cried nonstop, nonstop.
• 20:46
  SPEAKER_03: And all my kids have been like very happy.
• 20:48
  SPEAKER_03: So from the get-go, I thought, why is she crying so much?
• 20:51
  SPEAKER_03: What is going on?
• 20:52
  SPEAKER_03: And she didn't want to eat, which was very odd.
• 20:56
  SPEAKER_03: All of my children, I breastfed all my kids, didn't have any issues.
• 20:59
  SPEAKER_03: So for the first few weeks of her life, it was very stressful.
• 21:03
  SPEAKER_03: We had to go for weight checks at the doctors.
• 21:05
  SPEAKER_03: I had to syringe feed her to make sure she was getting enough nutrition.
• 21:09
  SPEAKER_03: And they kept saying, if she doesn't start to eat, we're gonna have to get a feeding tube.
• 21:13
  SPEAKER_03: And at that point, I thought, oh my gosh, that would be awful.
• 21:16
  SPEAKER_03: I just didn't know anything, right?
• 21:19
  SPEAKER_03: She's five weeks old, it's right before Christmas.
• 21:21
  SPEAKER_03: Everyone in the house is sick.
• 21:23
  SPEAKER_03: She ended up getting sick and she stopped breathing at home.
• 21:26
  SPEAKER_03: Just totally blue, totally blue.
• 21:28
  SPEAKER_03: Call the ambulance.
• 21:29
  SPEAKER_03: Luckily, she took a breath before the ambulance came, go to the hospital.
• 21:34
  SPEAKER_03: She ends up having flu B and pneumonia, and they intubated her.
• 21:38
  SPEAKER_03: So none of this was good, right?
• 21:40
  SPEAKER_03: Everything I had known about ventilators was from COVID times where people get on a ventilator, they're not getting off of it.
• 21:48
  SPEAKER_04: This gave you a new perspective on healthcare and advocacy.
• 21:51
  SPEAKER_04: You're managing this crisis at the time and just trying to survive as you're getting care.
• 21:56
  SPEAKER_03: It did.
• 21:57
  SPEAKER_03: It it really did.
• 21:58
  SPEAKER_03: And it was really interesting.
• 22:00
  SPEAKER_03: Because my husband is not in the medical field at all.
• 22:03
  SPEAKER_03: So he was just like, I just gonna listen to the doctors, whatever they tell me.
• 22:08
  SPEAKER_03: But I was really like, okay, what's her stats?
• 22:10
  SPEAKER_03: What's her numbers?
• 22:11
  SPEAKER_03: What's going on?
• 22:11
  SPEAKER_03: What are you gonna do next?
• 22:13
  SPEAKER_03: It was really part of the conversation.
• 22:15
  SPEAKER_03: I trust them, don't get me wrong.
• 22:17
  SPEAKER_03: It's not that I don't trust them, but I know that you need to be an active driver in making sure you get the right health, right?
• 22:24
  SPEAKER_03: So she was on the ventilator.
• 22:26
  SPEAKER_03: I remember asking, how long do you think she's gonna be on a ventilator?
• 22:29
  SPEAKER_03: And they're like, maybe two or three days.
• 22:30
  SPEAKER_03: And it ended up being two months.
• 22:32
  SPEAKER_03: She was on a ventilator, and it was like one thing after another.
• 22:36
  SPEAKER_03: She had that initial pneumonia, but then she got ventilator-associated pneumonia, and then she got necrotizing pneumonia.
• 22:43
  SPEAKER_03: It's the cascade.
• 22:44
  SPEAKER_03: Exactly.
• 22:45
  SPEAKER_03: Which then she had a hole in her lungs.
• 22:47
  SPEAKER_03: So then she had three different chest tubes.
• 22:49
  SPEAKER_03: So then they took her off and she went into a pulmonary hypertension crisis.
• 22:52
  SPEAKER_03: And we thought we were gonna lose her several times.
• 22:55
  SPEAKER_03: All in all, she ended up spending about six months in the hospital.
• 22:58
  SPEAKER_03: Yes, it was awful.
• 23:00
  SPEAKER_03: So when she came off the ventilator, she was on oxygen for about a year and a half, and she's off oxygen now, luckily.
• 23:07
  SPEAKER_03: But she still never ate and she still doesn't fully eat.
• 23:11
  SPEAKER_03: So she does have a G tube that we are working with eating therapy and things like that.
• 23:16
  SPEAKER_04: That's a lot that you dealt with, your daughter, and your own personal journey was substantial as well, and a lot to deal with.
• 23:24
  SPEAKER_04: A lot of things simultaneously at many points in your life.
• 23:27
  SPEAKER_04: For those listening, is there anything you would share about what being a caregiver taught you that being a patient didn't?
• 23:34
  SPEAKER_04: Oh.
• 23:34
  SPEAKER_03: When I was a patient, even though I was in my later 20s, I moved back in with my parents because I really needed a lot of help.
• 23:42
  SPEAKER_03: And I remember really focusing on myself, right?
• 23:45
  SPEAKER_03: Like every day I was just trying to survive.
• 23:48
  SPEAKER_03: And I remember my parents being really upset.
• 23:50
  SPEAKER_03: And I would get upset.
• 23:51
  SPEAKER_03: Why are you so upset?
• 23:52
  SPEAKER_03: Come on, this is me.
• 23:53
  SPEAKER_03: But now, like I have a different view of it where I'm like, my parents were just as implicated as I was at that moment because when Ellie was sick, I was just as implicated as her.
• 24:04
  SPEAKER_03: So that perspective was probably the biggest one that I gained from that.
• 24:09
  SPEAKER_02: And you have these other children in your family who are impacted as well.
• 24:14
  SPEAKER_02: What does that look like?
• 24:16
  SPEAKER_03: Yeah, it was hard.
• 24:18
  SPEAKER_03: It was really hard.
• 24:19
  SPEAKER_03: Luckily, we have a really supportive family that stepped up and swooped in and really helped them.
• 24:24
  SPEAKER_03: My older daughter, she kept saying that she was the reason that Ellie got sick because she had the flu.
• 24:32
  SPEAKER_03: So we had to navigate that for a while.
• 24:34
  SPEAKER_03: It wasn't her, right?
• 24:36
  SPEAKER_03: The whole house was sick, but she was six at the time.
• 24:39
  SPEAKER_03: That's how you think.
• 24:40
  SPEAKER_03: Yeah.
• 24:41
  SPEAKER_03: Exactly.
• 24:41
  SPEAKER_03: So I actually I did put her through a trauma therapy program for kids because I didn't want that to stay with her for the rest of her life.
• 24:49
  SPEAKER_03: My first son, he did pretty well.
• 24:51
  SPEAKER_03: He's pretty even positive kind of guy.
• 24:54
  SPEAKER_03: My two-year-old at the time, I don't think I realized how much it impacted him until a year or two later.
• 25:01
  SPEAKER_03: I realized that now where he was so little, he couldn't fully grasp what was going on, but we were gone, right?
• 25:08
  SPEAKER_03: And he was with my parents.
• 25:09
  SPEAKER_03: So I tried to give him some extra love.
• 25:13
  SPEAKER_04: Yeah, that's beautiful.
• 25:14
  SPEAKER_03: Now that I realize that it's really made them more empathetic.
• 25:18
  SPEAKER_03: Nowadays, they know how to hook up her feeding pump and give her medicine and when she was on oxygen, how to switch the cannulas and put the stickers on and stuff like that.
• 25:28
  SPEAKER_03: And I think that really will help them in their future life.
• 25:32
  SPEAKER_04: And what would you say to other families out there right now that are navigating a really tough time as patient, as caregiver, what to think about and how to get through it?
• 25:41
  SPEAKER_04: What are your thoughts?
• 25:42
  SPEAKER_03: Whenever I was on that beach in Florida after American Idol, I decided that my blog was going to be called It's Just a Bad Day, Not a Bad Life.
• 25:50
  SPEAKER_03: And that's really a motto that I have embodied in my whole life.
• 25:54
  SPEAKER_03: So I would say just that no matter what you're going through, it's just a bad day.
• 25:59
  SPEAKER_03: And it may be a string of horrible, no good, very bad days, but it doesn't mean you have a bad life.
• 26:06
  SPEAKER_03: And it doesn't mean you can't still find the positives in every single day.
• 26:10
  SPEAKER_03: Because when you do look for them and you focus on them, you can really turn those days around.
• 26:16
  SPEAKER_04: Julie, that's beautiful.
• 26:17
  SPEAKER_04: And the it's just a bad day website is such a thoughtful reflection and honest sharing.
• 26:25
  SPEAKER_04: And thank you for putting that out there.
• 26:27
  SPEAKER_04: Amidst dealing with everything that you did over many years as a patient and then a caregiver, this really impacted what you thought about work and how you wanted to spend your time and how you wanted to move forward.
• 26:41
  SPEAKER_04: Tell us a little bit about how that work journey moved forward amidst all of this.
• 26:47
  SPEAKER_03: Whenever I was in my late 20s, I was working as an IT consultant.
• 26:51
  SPEAKER_03: So I had to go out on disability.
• 26:53
  SPEAKER_03: I couldn't work.
• 26:54
  SPEAKER_03: So for three and a half years, I was on disability.
• 26:57
  SPEAKER_03: After I regained my strength and I got back to walking, I thought, I can't go back to IT.
• 27:03
  SPEAKER_03: Like, I can't do that.
• 27:04
  SPEAKER_03: I need to do something with these communities.
• 27:06
  SPEAKER_03: There's so many patients out there sharing their story.
• 27:09
  SPEAKER_03: I just wanted to help amplify every single voice.
• 27:11
  SPEAKER_03: So I had been working with a company at that time called Weego Health.
• 27:16
  SPEAKER_03: And I remember I had just really started thinking about getting back to work and I wasn't sure what my next move was going to be.
• 27:23
  SPEAKER_03: And they reached out to me and they were like, hey, do you know anyone?
• 27:26
  SPEAKER_03: We're looking for a director for our community.
• 27:28
  SPEAKER_03: And I said, Me, that's me.
• 27:30
  SPEAKER_03: So I came on board in 2016 and it has just been a phenomenal ride.
• 27:35
  SPEAKER_03: And my focus has been on the patients and caregivers and HCPs online who are sharing their story and helping connect millions of other patients and caregivers with information that they need that they can take back to their doctors to make informed decisions.
• 27:49
  SPEAKER_03: At Weigo Health, we built the largest patient leader network, over 100,000, and we had an awards program and we had all of these amazing things.
• 27:57
  SPEAKER_03: And then in 2021, we were acquired by Health Union, which is a phenomenal company.
• 28:02
  SPEAKER_03: If you don't know the company, you probably know our site.
• 28:06
  SPEAKER_03: So at Health Union, we run over 125 different condition-specific platforms.
• 28:12
  SPEAKER_03: So we started with migrant.com and we have rare diseases, we have autoimmune, we have oncology.
• 28:18
  SPEAKER_03: We have so many different sites, and our sites are really communities.
• 28:22
  SPEAKER_03: The content is built by patients and caregivers for patients and caregivers to allow them all to come and connect and get those resources that they need.
• 28:31
  SPEAKER_03: So through my own journey of utilizing patient communities to impact my health, my own health, I now am working with patient communities to help other patients get that same benefit that I did.
• 28:42
  SPEAKER_04: Julie, I think that's beautiful and so impactful.
• 28:46
  SPEAKER_04: I can hear the passion in your voice as you're describing work.
• 28:49
  SPEAKER_04: You and I have chatted a lot about patient engagement, patient advocacy, patient inclusivity.
• 28:54
  SPEAKER_04: What are your thoughts on what are some of the biggest misconceptions when it comes to patient advocacy that some people still have out there?
• 29:02
  SPEAKER_03: Yes, so many.
• 29:03
  SPEAKER_03: I'll boil it down to a few.
• 29:05
  SPEAKER_03: So a lot of the work that I do is with our patient communities and then doing influencer marketing for different healthcare companies utilizing these health leaders.
• 29:14
  SPEAKER_03: And the biggest sticky points I have, number one, people thinking that they can do work for free.
• 29:20
  SPEAKER_03: Pharma companies or other healthcare companies tapping into these health leaders who spend countless hours building community, messaging, DMing people, and then thinking that they can just obtain their audiences for free.
• 29:32
  SPEAKER_03: That is the biggest pet peeve of mine.
• 29:34
  SPEAKER_03: So I just feel like people need to be fairly compensated for their expertise because they are a patient and caregiver, right?
• 29:40
  SPEAKER_03: So they have that experience, but they also have the collective patient experience as well that they can bring.
• 29:46
  SPEAKER_03: So then a second pet peeve of mine is actually tapping right into that, is that so many patients and caregivers out there are sharing just their story.
• 29:56
  SPEAKER_03: And I don't think they realize how much power and expertise they can bring because they're connecting with that collective community.
• 30:05
  SPEAKER_03: They can be going out and working with companies or working with others to spread that message.
• 30:10
  SPEAKER_03: So it's both on the flip.
• 30:12
  SPEAKER_03: It's on the healthcare side that I have a big pet peeve, but then also within the patient community, I feel like so much undervaluing of what they can bring.
• 30:20
  SPEAKER_03: For that, to try to help mitigate that.
• 30:23
  SPEAKER_03: We actually created a certification program a few years ago so that patients and caregivers who are sharing their story, who want to get out there and have credibility, they can come.
• 30:34
  SPEAKER_03: It's a free course for anyone.
• 30:36
  SPEAKER_03: It's on the socialhealthnetwork.com.
• 30:38
  SPEAKER_03: That's one of our communities at Health Union.
• 30:40
  SPEAKER_03: And it is a fantastic course that helps you hone your own story, be able to share it to different audiences, build an online presence, but then also know the rules of the road as sharing your story, as sharing the community's story.
• 30:53
  SPEAKER_03: You need to make sure you do it in a responsible way.
• 30:56
  SPEAKER_03: So that's one of the biggest prides and joys that I have from my career of being able to put this certification out there for anybody out who would like to gain that credibility.
• 31:04
  SPEAKER_02: That's incredible.
• 31:06
  SPEAKER_02: We hear very often people share stories like yours where they've got all these skills they've been able to develop through their career.
• 31:14
  SPEAKER_02: And then at the point where they start to have that health journey, they've now encountered something and cannot go back to that same job.
• 31:22
  SPEAKER_02: How do I start to move forward and think about bringing all of that experience together to create a living?
• 31:28
  SPEAKER_02: And you're absolutely right.
• 31:29
  SPEAKER_02: Why wouldn't we compensate that fairly?
• 31:32
  SPEAKER_02: Yeah.
• 31:32
  SPEAKER_02: Yeah, it makes perfect sense.
• 31:34
  SPEAKER_03: Amen.
• 31:35
  SPEAKER_03: I always say that when people are saying, I don't know how to make an impact.
• 31:37
  SPEAKER_03: I say, okay, take a step back.
• 31:39
  SPEAKER_03: You know your patient story or a caregiver's story, but what else do you bring to the table?
• 31:43
  SPEAKER_03: Did you go to school for anything?
• 31:45
  SPEAKER_03: Are you good at graphic design?
• 31:46
  SPEAKER_03: Are you really good at fundraising?
• 31:48
  SPEAKER_03: There are so many other things that you can do.
• 31:50
  SPEAKER_03: And that's what I really love about the patient leadership journey is that everyone does it differently.
• 31:56
  SPEAKER_03: And there's a seat at the table for everyone, and we all need to be at that table because we all have a part to play and we can make a big impact.
• 32:04
  SPEAKER_04: I love that so much.
• 32:06
  SPEAKER_04: And just this conversation today has been very thoughtful and enlightening.
• 32:11
  SPEAKER_04: And Julie, everything you've dealt with on the personal health front and then the mama and how you've moved forward to really build a career around patient voice and help other patients is really inspiring.
• 32:21
  SPEAKER_04: On the fun front, interested a little bit on how you unwind.
• 32:26
  SPEAKER_04: And given everything that's going on, I'm gonna think it has to do with hanging out with your kids.
• 32:32
  SPEAKER_04: So tell us a little bit about what unwinding looks like for you.
• 32:36
  SPEAKER_03: Yeah, if you would have asked me before I had kids, I would have said, oh, teaching a yoga class or trying a new recipe.
• 32:42
  SPEAKER_03: Love those things.
• 32:43
  SPEAKER_03: And I still do love those things.
• 32:45
  SPEAKER_03: But having had Ellie in the hospital for so long, honestly, the biggest and best things are just being with my family.
• 32:52
  SPEAKER_03: Whenever I wake up and everybody's under one roof, that just gives me such peace of mind.
• 32:57
  SPEAKER_03: Just going and experiencing new things with them.
• 33:00
  SPEAKER_03: I absolutely love that.
• 33:02
  SPEAKER_03: And another thing that we as a family love is my kids absolutely love.
• 33:06
  SPEAKER_03: We'll say we bring my husband along with us, is going to Disney.
• 33:09
  SPEAKER_03: Love it.
• 33:10
  SPEAKER_03: So I still love Disney.
• 33:11
  SPEAKER_03: I still love taking them to Disney.
• 33:13
  SPEAKER_03: They ask me every day if we can go to Disney.
• 33:17
  SPEAKER_04: That's a positive thing.
• 33:18
  SPEAKER_04: That's also popular at my house.
• 33:20
  SPEAKER_04: That's the one trip that everyone's asking for again is the when is next Disney?
• 33:23
  SPEAKER_04: Maybe we'll coincide and meet at the same time, Julie.
• 33:26
  SPEAKER_04: That'd be a lot of fun.
• 33:27
  SPEAKER_04: We need like a conference down there.
• 33:29
  SPEAKER_04: Something to organize.
• 33:30
  SPEAKER_04: So, Julie, thank you for this conversation today on Amplify.
• 33:34
  SPEAKER_04: Thank you for everything that you're doing out there across the communities and everything you're doing as an individual and wishing you personally and your daughter and your family all the best moving forward.
• 33:44
  SPEAKER_03: Thank you.
• 33:45
  SPEAKER_03: Thank you.
• 33:46
  SPEAKER_03: Thank you for just giving such a great platform for all patients and caregivers to share their story.
• 33:51
  SPEAKER_02: Thanks for being with us today.
• 33:58
  SPEAKER_05: Thanks for tuning in to Amplify, a podcast powered by Patient Voice Partners.
• 34:03
  SPEAKER_05: If today's story moved you, share it, leave a review, and help us amplify more voices.
• 34:09
  SPEAKER_00: If you're a patient or caregiver, you can join Patient Voice Connect to share your experience and help shape research and care.
• 34:16
  SPEAKER_00: Visit patientvoicepartners.com to sign up or learn more.
• 34:20
  SPEAKER_05: If you're a clinician, advocate, innovator, or system leader, and you'd like to be a guest on the show or share a story, reach out directly through the contact form on that same page.
• 34:32
  SPEAKER_05: You're also welcome to join anonymously if preferred.
• 34:35
  SPEAKER_00: Follow us on LinkedIn at Patient VoicePartners for updates, behind the scenes content, and to meet our upcoming guests.
• 34:41
  SPEAKER_05: Until next time, stay connected.
• 34:44
  SPEAKER_05: Your voice matters