Dave Plough
Welcome back to our third episode of season two already for Collaborative Conversations. Thank you so much for joining us again. I am Dave Plow and I am joined by the director of the IU IP center, doctor Barbara Maxwell.

Barbara Maxwell
Everyone, I'm glad to be with you, Dave.

Dave Plough
hey, I'm glad to have you here. Especially since we're speaking with two guys that you are more familiar with than I am. I, I've worked with Ted for, well, years now. At this point, I think it's been two years, so I can say that plural. But Rick is relatively new to me and new to the center. And today they're going to be talking a little bit about Rick's journey. He has become something of a patient voice for us. Right?

Barbara Maxwell
Yeah. Rick, actually reached out to us, last year, with an idea that he would love to be a patient advocate for the center. And anything that he could do to help us with their work is what he was interested in doing. So, we've had come sessions, with Rick Phillips, several times. And different members of our team in the center have been working with Rick on different projects. So this is one of them. Rick has lived a life time with type one diabetes and rheumatoid arthritis. And so he has a beautiful lived experience to share about his journey through life with, both of these conditions and also a beautiful way in which he talks about the history of why he wants to be an advocate, why he wants to lend that patient voice, and the different work that he has been doing for many, many years, doing that both in educational spaces, organizations that work with diabetes and, rheumatoid arthritis and also as patient participant in research and a patient advocate in research. So he talks beautifully about, you know, his lived experience and his mother's, type one diabetes and some significant changes that have happened over time. And to see him interviewed by Ted Meyer, Ted is, for me, a master in interviewing, people. He's just a natural at it. And, Ted is, artist in residence at the Keck School of Medicine and an artist patient advocate himself. And he does a beautiful job of just speaking with people about their lived experience. In this podcast, he's talking with Rick about Rick's lived experience. But Ted also has a lived experience with chronic disease as well. And so we will at some point be capturing that to. So it's wonderful to get these two people who are very passionate about the importance of health care providers actually being really effective with their communication, listening particularly to the expertise that they have in their own conditions. And that is a hard thing for health care providers to do, because we often think we have the expertise, but they have significant expertise and often more expertise than the people that they're encountering from the health side on their particular conditions. And so, it's really lovely to be able to have these two voices to help us as health care providers, understand what it is to really be person centered and what it is to really have to listen and attest to their expertise.

Dave Plough
Yes. I really don't have much to add to that except for. Because you said it so well. But I do want to point out before we start rolling that this is planned to be episode one of two between Ted and Rick. The conversation is deep and it's pretty long. And there there's just so much rich information in here that that Rick shares and that Ted's able, as you said, he's a master interviewer. He's he's very good. He was able to pull a lot out. So we do end up with two episodes of this. So we'll be splitting this into part one and part two. This is part one. Part two will be coming in a week. So with that in mind, we're going to let Ted take it away.

Ted Meyer
Thank you both for the introduction. So you know who's who. I am Ted Meyer and I am in Joshua Tree, California.

Rick Phillips
And I'm Rick Phillips. I'm in Noblesville, Indiana.

Ted Meyer
Hey, Rick. So we are here to talk about you and what you're going through and how you're dealing with it. So I'm going to start with a couple facts, some about you and some about illness in general. So you were diagnosed with type one diabetes in 1974 and rheumatoid arthritis in the year 2000. So you two for one, you got two for one.

Rick Phillips
Yeah, I also have a composing spondylitis, so I really had three. Three for one. I tell my doctors I'm trying to get to five before I leave this earth. So, I'm really looking for number four right now.

Ted Meyer
It's not a contest. All right, so I just want to do a couple facts for people that are watching and might not know how many people are affected by this. So in the most recent year, 2024, 38.4 million people in the United States had diabetes. That's about 1 in 10 adults and 1.3 million people have rheumatoid arthritis, which is point six of the population, and you are in the special group of 20% of those people that have both. So congratulations on that.

Rick Phillips
Touching.

Ted Meyer
about your condition a little bit. what's your daily routine? How do you, take care of yourself? How many pills do you have to take a day? What exercises? Whatever you can think of.

Rick Phillips
Oh, geez. I take, 26 or 7 pills per day.

Ted Meyer
Well.

Rick Phillips
I tell my doctors I only take pills twice per day, once in the morning. And what's in the evening? And, we have to schedule around that. So if they want to give me a mid-day pill, we have to find something else. I usually get up first in this house, and so I usually get up and do some writing. Have my breakfast, take some pills, and, I usually go back to sleep for a little bit. We almost always walk in the afternoon. We try to walk, a mile to mile and a half each day. We have a park that we just love to go to, and, we know some of the wildlife over there and and plenty of the dogs. and then, we have dinner and, usually come back and, do some more writing or homework. I am still in school and probably always will be. And

Ted Meyer
you're taking.

Rick Phillips
so right now I'm starting to be a, lay minister at, Phillips Seminary in, Tulsa, Oklahoma. I have my, doctorate of education from, Nova Southeastern, and I have, bachelor's and master's from IU and, probably administration. So I've lived a full academic life, and, I do like being in school, and I'm going to like being out this time.

Ted Meyer
So how does this all manifest for you? I how bad is, the arthritis? You still have movement in your hands. And how much of it. And and the diabetes and how much is controlled by these 26 pills a day.

Rick Phillips
A lot of the arthritis is controlled by the 26 pills. I also use a drug called root senex, which is a infusion that I have every four months. so between the infusion and the pills, my rheumatoid arthritis is fairly well. Control. Except when it's not. And what could happen? Periodically is, for whatever reason, things will just go completely off the rails. And, the only thing to do when that happens is to, in my opinion, what I do is try to exercise more, when I'm feeling just awful. The surest way to get back, to doing okay is to walk more or ride my bike more, or or just have got to pull out and keep going. Because you. If I give in, if I just say, I'm going to sit down here and feel better, then it it's like a cascade of just overwhelms you. And, you know, I think I know to do is keep going. I can't.

Ted Meyer
got the the same thing that we. We got this really big dog, and I have. I have pretty bad legs. And a lot of times I would like to sit, but the dog will not let me sit when he wants to go out. I have to I've got

Rick Phillips
Yeah.

Ted Meyer
And I'm really grateful. But he forces me to get up sometimes and and move when I probably just rather be a little sedentary.

Rick Phillips
Yeah. I mean, I've got I've got my wife. In the diabetes community, we call people who are your partner. a type three diabetic. she does not have diabetes, but, we call her type three because she is the one who will oftentimes say, you know, we gotta get up. We gotta we gotta get going. We have to do this for blood sugar. We have to do this for arthritis. We have to do this because we have to do it. And, I've had diabetes now almost 51 years, sure. And I've been married 48 and, I'm positive that the only reason that I've made it this far is because of share.

Ted Meyer
Thing perfect. Recently. Get married. other than Cheryl, I'm always interested in people like you who have conditions like this and then sort of make a positive out of it. You're a writer, you perform, you've got a blog, you're an advocate. And I'm always amazed by the number of people that have sort of chronic illnesses that rather than sort of cloister up at home, they go out and try to help other people. is that something you learned through all this to give out, or were you always that kind of person? And and what do you get from sharing your story to everybody?

Rick Phillips
Well, it actually started when I was a kid. Well, before I had, diabetes. My mom had type one diabetes, back in the 60s. actually, it started even before I was born. My aunt had type one diabetes in 1947. And, she lived until 1950. She had the disease at age seven. She died at age ten. My mom was diagnosed in 62. She died in 86. And, all the time when I was growing up, because there really weren't people who understood diabetes in the community. My mom would babysit, kids. Their moms would, me to have a day out or each doctor or something. so I had a parade of kids through my life that had type one diabetes. And it really gave me the sense that, community is better than not having community. And I know that the, kids that came to my house, benefited from my mom's understanding of type one diabetes. And, some of them continue to be my friends,

Ted Meyer
How's the treatment changed in the last 50 years? I mean, I assume maybe now you're wearing one of those things that automatically gives it to you. Whereas before

Rick Phillips
Yeah.

Ted Meyer
clock for shots on. How did it start and how is it now?

Rick Phillips
It's phenomenal. Again, I'll point to my mom. My mom was in a, early pump study, back in 1972. And, the pump is a pump at that time was as big as a cart. if you were picked to be on the pump, you had to push this cart around the hospital. my mom was a control subject, so I got to see what the pump looked like. And I got to see the, The impact ability of what that pump looked like. And, today, this is my pump.

Ted Meyer
It's amazing.

Rick Phillips
And, you know, this is what controls it. And I probably looked at this, controller 100 times a day. And what is so impactful about it is that every time I look at that, I see my mom, my mom had a little piece of that pump. She didn't create it. She didn't perfect it. But without people like her, that pump would not be here today. She has a little piece of that. And I get to see that little piece of it. So I asked my mom, when she was in the pumps today, right after the pump study, I said, mom, why do you do something like that? I said, because that's so impractical. And she said, I'm not doing it for me. I will probably never see that pump, but I'm doing it for you, or I'm doing it for you or your children's children. Someday somebody in this line is going to have an insulin pump, and they're going to say, my grandmother, my great grandmother, my mother stood up and helped bring this to market. and she just really, engaged me to think that that is our responsibility. It's our responsibility with, anything that we can do to to help future generations. Because I know how much I'm benefiting from her and other people's contributions.

Ted Meyer
Yeah. And I think right now, with all the budget cuts for research. I mean, that's this whole idea of taking funding away that's going to help future generations. It's to me, it's. And I, I understand there's another side to this argument, but to me, it just seems criminal to to stop a lot of these tests that have been going on,

Rick Phillips
Well, I'll tell you that, I'll tell you that there's a, 30 plus year, diabetes study administered by Columbia, funded by the federal government. We have brought, type one diabetes research so far forward in those 30 years, Columbia has been administering, this program and, they have been told to shut it down and all of that, all the subjects, all the data, everything that was in that is, immense jeopardy right now. this is this is the backbone study of type one diabetes research in the world. it affects kids. It affects kids and adults in Indiana that tax kids at Riley Hospital. And whatever the beef is with Columbia, kids at Raleigh Hospital had no part of it.

Ted Meyer
Yeah. The. So I have something called Coach's disease, which is, enzyme deficiency. I gave bone marrow when I was six years old, and I did not get the drug until is 42. And, you know, that's that's how long these people toil away. Sometimes to help us. And, you know, they dedicate their lives to it. It's it's, it. Anyway, I could go on forever. I want to focus on you. So.

Rick Phillips
it's just to say that there is a responsibility that, was instilled by my mom, for future generations. from before I had diabetes, she was looking down the road, and, mom was not alive when the pop was, brought to market. She never got the benefit of that, but, she saw day that, others would benefit, and she was willing to undergo, that, medical testing. And it's just something that, that she instilled in me.

Ted Meyer
Well, this leads us right to the next question of your advocacy for people. And you do it in a number of different ways. You've got a pretty extensive blog that has personal essays about your illness, but it also has basic information for people who have diabetes or rheumatoid arthritis. So you're getting facts out that way. There's videos online of you telling stories about it. You you write. So that's a little bit of your mom coming through that helping other people.

Rick Phillips
Well, I always say that the blog in particular, whatever I write in, whatever I blog, is really for me. It's really for me to exercise the emotional part of these diseases. when I was first diagnosed, I really was angry about it. And I was angry for a very long time. it finally got to the point where I had to, seek psychological help in order to continue to manage diabetes and in particular. one of the things that came out of that was, you know, it's not appropriate to keep these things bottled up. It's more appropriate to let it out. and it's true. And so that's the reason I started to blog. And as reason, I became more public, with disease. And that's the reason I really enjoy doing it. And it's led me in all different kinds of ways. That I never dreamed was possible. And, I'm very I'm very excited about that.

Ted Meyer
When I was. I've. I've found that over the years. I have different ways of getting my frustration. Like when I was younger and a little more athletic. When I was really upset. I go to the batting range just so I could hit stuff, you know? And now I. I'm like you, I tend I tend to write. so let's let's talk a little bit about some of the stories on your blog. So I wrote you had one, you had some back surgery because

Rick Phillips
Right.

Ted Meyer
arthritis. So you wrote a piece about your adventures in back surgery. But but there was one you wrote Sticky Buttons and it was really about the fact that your fingers swell up. So a lot of this new technology, you can't always access because your fingers obey and you misspellings and things like that. And that's the story in the blog that really spoke to me, because I find that the bigger pains that I have or the fatigue that are constant, I've learned to deal with. But it's the little days when, like, my fingers don't work or I get up and maybe my balance isn't as great, that the stuff that comes and goes, like the little minutia is the stuff that's always like, you're you're still sick, you're still. And I just really related to that, to that little piece like this one little annoyance thrown in on top of everything else. Sometimes it's just that line where you're like, oh, I'm sick of it.

Rick Phillips
Yeah. I told I told Cheryl the other day. I said, you know, I am so sick of being sick, I really am. I'm sick of being sick. But. she said. What choice do you have? You know, by choice. Do you have accept to keep going forward and hopefully view it with humor bring a smile to other people, and be deadly serious when, when we're talking about some topics that are, more community in nature, for instance, if we're talking about Medicare, access to, continuous glucose monitors, which we were, two and a half years ago, that's a deadly serious issue. And I tried to be as outfront on that as humanly possible. On the other hand, talking to my doctor and having a good laugh refused to have a doctor laugh with me. And, setting those a standard is something that makes my life more bearable.

Dave Plough
Thank you Ted. Thank you, Rick, for this conversation. Again, I want to point out this is part one of two. So we have another part coming up with Rick. And that'll be next week in our next episode. So if you enjoyed what you heard today, awesome. Come back. You'll hear more for Rick. He's going to get a little more in depth on his own care the experiences that he's had, good and bad experiences with health care and again, just thank you both for for being a part of this.

Barbara Maxwell
I just wanted to say that hear the IU Interprofessional Practice and Education Center. We think it's incredibly important that our learners, actually hear from real people, that they hear the voices and the stories and the lived experience and the expertise. And I think what you hear when Rick speaks about his experiences and his life is that significant expertise and his own, disease and how that disease impacts him. And when he steps in to care, if we fail to listen to that, we are not going to do as well as we could if we just follow his lead. So a huge thanks, Derek, for kind of sharing and making that so apparent.

Dave Plough
And again, if you want to hear more from our from the patients, because we have been trying to give the patients a voice or our students or faculty. You can follow us on social media. LinkedIn. They are professional practice and education center. And you could follow us on our website at IPE.IU.EDU.  Make sure you visit us for the next podcast.