Scott Benner 10/30/22 Scott Benner 10/30/22

#780 Bold Beginnings: Treating Low Blood Glucose

Scott Benner 10/30/22 Scott Benner 10/30/22

#779 Lady In The Closet

Barbara has type 1 diabetes..

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to episode 779 of the Juicebox Podcast.

On this episode of The Juicebox Podcast, I'll be speaking with Barbara, she's an adult living with type one diabetes who I had on the show because of what she did for a living. I of course, then almost exclusively didn't talk to her about that. I don't know, I don't know what's wrong with me. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. Are you sitting there right now thinking Yes, Scott, I am a US resident who has type one diabetes, or perhaps you're thinking I am a US resident, and I'm the caregiver of someone with type one. If these are things that you think about yourself, I need you to go to T one D exchange.org. Forward slash juicebox. Join the registry, fill out the survey completely. That's what I need. That's it. Take you 10 minutes. If you're fast taking nine minutes if you're slow 12 I'm not with you. I don't know exactly how well your type says a quick survey helps people with type one diabetes. Nothing's hard or confusing about it won't take you long supports people with type one might help you out. Definitely helps me out T one D exchange.org. Forward slash juicebox. This episode of The Juicebox Podcast is sponsored by touched by type one and touched by type ones dancing for diabetes show is coming up quickly. Head over right now to touched by type one.org. To learn more about it and buy yourself some tickets. today's podcast is also sponsored by the Contour Next One blood glucose meter. You can learn more about the Contour Next One, and even buy it online. At contour next one.com forward slash juice box get the accurate blood glucose meter that my daughter uses at contour next one.com forward slash juice box. This show is sponsored today by the glucagon that my daughter carries G voc hypo pen. Find out more at G voc glucagon.com. Forward slash juicebox. Said Barbara I'm gonna start the recording. I don't want to. So I'm sorry. Say that again using a suitcase as a desk and

Barbara Westberg 2:31
and a stepladder as a chair. So I'm I'm good and comfortable here

Scott Benner 2:37
and in in your closet. In my closet. Yes. And earlier when we weren't recording. And I knew magically that there was no carpeting in your room for a second. Were you impressed?

Barbara Westberg 2:49
Slightly slightly. Barbara. Yeah.

Scott Benner 2:52
Give it to me a little bit. I mean, you don't I mean, like.

Barbara Westberg 2:55
I mean, this isn't your first podcast. So you've probably had guests on, who have been in all kinds of wild situations. Alright,

Scott Benner 3:05
I see. You're not gonna let me have that. That's fine. We'll move forward.

Barbara Westberg 3:11
Let's see who am I? I am Barbara Westberg. As long as you spell it with two E's and no use someone who understood that you were looking for people who have interesting careers, and I have had a multitude of those. I graduated from Arizona State University with a degree that people have actually made fun of in comedy routines.

Scott Benner 3:38
is an English degree.

Barbara Westberg 3:41
No, no, no. I, my degree from ASU is Recreation and Tourism Management.

Scott Benner 3:50
Oh, I didn't know that was the degree. I didn't

Barbara Westberg 3:53
either. And then I met someone who gave me my campus tour. And I was contemplating telecommunications, management. And he told me what he did and he was like, You got to do this greatest thing ever. And I did and it was the greatest thing ever. Best advice ever.

Scott Benner 4:13
What's the what did it prepare you to do?

Barbara Westberg 4:17
Um, pretty much anything except for you know, brain surgery, things like that, or be a diabetic educator. You know, life gave me those skills. But there's a lot of management involved in Recreation and Tourism Management. So anywhere where I put your mouse around, I've got this educational foundation. And also, I can take an event that is falling to pieces and somehow make the people who bought tickets to it not understand that everything is falling into place. says,

Scott Benner 5:02
are you telling me you know how to shine up a turd, Barbara?

Barbara Westberg 5:05
I do. I certainly do. Thank you for that that phrasing I'm going to add that to my resume

Scott Benner 5:10
that writing your CV. Barbara Westberg can shine up your turd? I'll tell you what, that might get you a lot of work honestly.

Barbara Westberg 5:20
Maybe not the industry I'm in fine.

Scott Benner 5:23
So So you come out of college and like, what's your first job?

Barbara Westberg 5:27
Um, actually, my first job in the industry was while I was still in school, I had an internship for Well, the way I decided that I wanted to be in events was I was volunteering at a fundraising event that my aunt had helped orchestrate. And I thought it was so much fun and so inspiring. And she said, you know, a lot of the people here are getting paid to do this, and my jaw dropped. What do you mean? I thought everybody here was a volunteer? Oh, no, there are people who have to actually be responsible for things who actually work for nonprofit organizations. And my whole life shifted. And that's when I knew that I wanted to be a fundraiser. And what I wanted to the way I wanted to do that was through events. So as a student, I had to have an internship. And it was with, you know, the, the rubber ducky races.

Scott Benner 6:38
No, but what what is that?

Barbara Westberg 6:40
They dump a whole bunch of ducks into a body of water. And the rubber duck that floats across the finish line first wins, whatever the organization has come up with as a prize. Okay.

Scott Benner 6:52
Who gets a rubber duckies? Back? That was my thought. Have you gotten back at the end?

Barbara Westberg 7:00
There? You would have to read the manual. There's all kinds of ways. But yeah, basically, it's a bunch of floating devices that make the ducks go into one lane, and then they're scooped up and put in things like shopping carts to drain them. I'm sure every Duck Race has a different retrieval method. But,

Scott Benner 7:20
Barbara, I want to tell you right now that I would wear a t shirt that said, every Duck Race has a different retrieval method. Because I've never heard those words strung together before my entire life.

Barbara Westberg 7:36
And see, this is what you missed out by not majoring in Recreation and Tourism Management. When you went to school.

Scott Benner 7:43
I didn't even go to college. Barbara. I missed out on everything. i There's no shot. There's still a shot. Can you imagine if I I'm so old, I wouldn't. I graduated from high school, went home. My mom gave me a cake. I had to go to bed because the next morning I started my job. And I well, I worked in a sheetmetal shop making $5.50 an hour at that time. So there was no there was no, I did not grow up in a way where higher education was something that anybody thought of. It was a it's just not it was not my family. But so. So wait a minute. So you have type one diabetes, When were you diagnosed?

Barbara Westberg 8:25
It was diagnosed in 1976.

Scott Benner 8:28
Wow, I was five in 1976. How old? Were you? Six? Oh, look at us.

Barbara Westberg 8:35
Yes, I'm one of those dinosaurs. You know, the back in my day, there was no way to test your blood sugar.

Scott Benner 8:42
Yeah. Then what did you do? I said, Well hold on a second 76. Is that like 45 years ago? Wow, that made me feel bad about myself. Give me a second. Let me breathe through that. I just found out yesterday, I have to have knee surgery. So I was like, Well, that sounds like a thing that happens to old people. So well. I mean, what was What's your early I don't want to jump around too much. But I'm going to what was management like 45 years ago?

Barbara Westberg 9:17
45 years ago, my mother was a registered nurse and was told that diabetes only especially type one only ran in families. So there was something wrong with me that was not diabetes. And finally she carried me into our family physician's office, and he said, drive her to the hospital don't wait for an ambulance and actually died in the emergency room. And it was something That was incredibly stressful, because every time my mother would share this news, I remember hearing, oh, she must have got that from the other side of the family. Well, no, I, I actually didn't need another diabetic until I was in high school. Didn't know anyone who had it was lucky enough to have a trained medical professional as a mother. But she was completely unprepared to for having a child diagnosed with type one. And I was hospitalized. And it was maybe five days. And I fully expected to leave the hospital and leave all of these injections and things behind me. However, the injections followed me because that was the way we managed one shot a day, there were two different types of insulin. They were I believe they were pork derived insulin that she mixed together in one syringe. And I needed to urinate into a cup and use an eyedropper to put drops on this little like, looked like a as, or something like a little piece of candy. But drop that into a glass test two, and then put drops of urine on top of that and see what color it turned, which basically was telling me nothing useful.

Scott Benner 11:42
I was gonna say, then you got all that information and did nothing with it, right?

Barbara Westberg 11:46
Yep, didn't change anything. So we were given a diabetic diet that we probably adhered to for about 15 minutes. And then two working parents with two kids. And it just management was inject your child with insulin in the morning, cross your fingers and hope. Yeah.

Scott Benner 12:12
But But can I ask you Are you do you have any weird, like complications? Or how are you doing?

Barbara Westberg 12:20
I, I actually met a diabetic researcher, who said, I don't mean this to sound weird, but I would love to study your body after you die. You're incredibly healthy. What's your secret? And I was actually honored by that. I do have some diabetic retinopathy. That actually came on during my pregnancy. But aside from that, I'm super healthy. That's crazy.

Scott Benner 12:51
Do you find that now looking like understanding? I don't even know how you manage right now. We'll get to it. But understanding how management exists now, looking backwards. Are you amazed by that?

Barbara Westberg 13:03
Oh, I don't know how I lived through my teenage years that rebelling the even as a small child like the rebellion and means strong. And doing things like sneaking Halloween candy. So Oh, so you know, as a child in the 70s. Basically, one of the other things they told us was just stop eating sugar altogether. Okay, you know, the the thought of eating a cup of rice was no problem. But having one piece of hard candy. No, you can't do that. So we've come so far. And yeah,

Scott Benner 13:49
I wonder if you're like me, when I hear that story, just that simple story. I think there's no way that people didn't understand carbohydrates, and that they would be broken down to your body and stored as glucose like, great. That had to have been a thing we understood in the 70s. So when I hear stuff like that, but I always think of is that how, as a as a society, how uninformed we are about things because somebody knew that that was not an unknowable fact that rice would turn into glucose when you ate it. Right? Like so. How do we put people? I don't know why I'm asking you this. But I'm always fascinated about why we put people who are unprepared for their job into that job. And I don't know if I'm making sense. I'm left down by people very often. And these are the kinds of stories that make it really bubble up inside of me. I'm sorry, I know you just you just made me feel like why can't this be understood and universally? Like it shouldn't take more than five minutes for everybody to get that? I guess? I don't know. It's, it seems insane to me.

Barbara Westberg 14:55
And for me what this really bring comes to light is that every diabetic is responsible for their own care. Or to have a great team of of parents or caregivers, and doctors and nurses and health care professionals. There's a lot to know. And you're in your, what number episode of this podcast, and I'm sure you learn something new or have a different take every time you talk to someone new on your podcast. Sure, yeah. It's a lifetime of learning when it comes to diabetes. And I'm, I'm still getting it wrong sometimes. Yeah. And the thought that someone who, like, I never saw an endocrinologist until I was in my teens. So my family doctor is supposed to know how to manage diabetes. That was an unrealistic expectation,

Scott Benner 16:03
right? No, I agree with you. I know. And I like intellectually, I understand. But I just, I'm thinking of a little girl like Horkan down rice, like it's nothing. And then somebody's like, Would you like a root beer barrel and someone flies across from us, Barbara cannot have a root beer barrel, you know, or whatever. And by the way, that was my favorite candy growing up.

Barbara Westberg 16:23
Oh, yeah, to have a birthday party where we ate pizza. And then the cake, there'd be candles on the cake. And I'd blow out the candles. And then everyone else ate the cake. And I didn't

Scott Benner 16:35
write the Gen three. Right? Yeah. You know, most of what I remember from the 70s, the mid 70s. Is the bicentennial. And gas lines. Those are two like enduring images in my head of the mid 70s. I don't know. I don't know why that is. I don't know. Maybe my life was super boring. Was that could that have been the only thing that happened in 76? Is that? Oh, I don't know. All right. Um, this whole thing is making me feel very old. I need to move on from your life. We need to move on from your early life. So when does I mean? Are you using? You're using beef and pork at that point, right? Insulin, right? Yeah. How long did you do that for? Do you know?

Barbara Westberg 17:25
What probably. Now, I actually I don't know. Like, my mom was responsible for filling the prescriptions. But I know that when I attempted to donate blood, they said, Oh, no, thank you.

Scott Benner 17:42
Because of that, right?

Barbara Westberg 17:43
Yeah, because of the actually, I think it's the beef insulin that I took. So I can never give blood, which is a interesting side effect of being a diabetic from the 70s.

Scott Benner 17:56
Well, I just talked to somebody today today, because I guess I'm doubling up my episodes trying to make up for my my foolhardiness of going away for a week and 25 years ago diagnosed. So 25 years ago, it's nine 2022. That's only like 97 Maybe. And they used to beef and pork for a little bit. You might have used it for a long time. Right.

Barbara Westberg 18:22
Right. I moved when I was 18. And, and was introduced to my very first endocrinologist. So that's probably the pivotal point. So that would have been 1988 is when I probably switched to a lab created insulin. Yeah, I was gonna

Scott Benner 18:39
say like mid mid 80s was probably well, more than a decade likely. And then you were just using cloudy and like, regular and mph. Right. Right. Yeah. And then you probably did that for another decade.

Barbara Westberg 18:54
Oh, yeah. Okay. And then they said they suggested multiple daily injections. And I said, No, I'm not doing that. It's not how I believe this far. I'm fine. There's no way. Oh, the one thing you should know about me is I am a diabetic who has a wild fear of needles and blood. And so the thought of me injecting insulin into myself twice a day, it didn't matter. You could not talk me into that. Until I was responsible for another life that was growing inside me and knew it was time to take responsibility and, and do the things that they were telling me to do.

Scott Benner 19:40
I'm trying to paint a picture between I mean, the the tight management that we use now, versus I'm just going to inject some of this. I mean, you're probably only doing it once a day at some points, right. Maybe twice. Yes. Yeah. So you know, and you're so like, I don't know, though, like do you think if we went got I found 100 people who were diagnosed the year you were that we wouldn't be hearing like, all these great health outcomes, like Could it be that you're just randomly lucky.

Barbara Westberg 20:11
Um, I actually have a network of diabetics that I talked to, and many of the marmite age or older. And it's really interesting. There are a lot of us who are doing very well, considering what we've put ourselves through. So, I wonder course, I'm not a research scientist, but I wonder if it's kind of like when you quit smoking, you can undo some of the damage that you were doing, and recover in some ways. I mean, it's, I don't know, miraculous, it's absolutely miraculous. I should not be alive. really shouldn't

Scott Benner 20:57
talk to me, tell me something that happened in your life that makes you feel like that should have got me that day.

Barbara Westberg 21:07
That should have got me that day. I was in Las Vegas. So a lot, a lot of walking a lot of food I was unfamiliar with sitting at a table and I felt a little woozy and I walked away and tested my blood sugar. And it was 33. And if you've ever been in a casino in Las Vegas, there's nothing close by you. You're surrounded by gambling options. But the idea of me then trekking back to my room, because for some reason, I didn't have candy on me. Yes, I should not have lived through that. Being 33 My blood sugar 33 in Las Vegas. I don't know how it was upright.

Scott Benner 21:59
Yeah, ironically, you had a big bag of rice in your purse. So you actually felt poorly tested your blood sugar and then went and then trekked back to another building to help yourself.

Barbara Westberg 22:16
Yes, yeah. Yes, you know, your mind is is thinking so clearly at that point.

Scott Benner 22:23
You're only focused and not paying attention like to big picture stuff because you can't because you're so low and you're just thinking like get to candy, get the sugar get the food do that.

Barbara Westberg 22:32
Right and somehow passing you know,

Scott Benner 22:35
every restaurant and bar on the way to

Barbara Westberg 22:39
places that have things like juice and yeah,

Scott Benner 22:43
wow, that's crazy. Also, I can't believe I skipped over this but I'm sorry your mom took you from the doctor to the hospital when you were diagnosed and you died in the hospital

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Barbara Westberg 25:31
died in the emergency room.

Scott Benner 25:32
How does that happen?

Barbara Westberg 25:34
I don't know exactly. I, I was so far gone like someone else would have been diagnosed much, much earlier than I. But her medical training taught her there was no way I was a diabetic so they weren't looking for it. So there was nothing wrong with me. You know, they couldn't find anything wrong with me. And I'm tired all the time I started wetting the bed again. I was ravenously hungry, but was losing weight. I was skin and bones. And

Scott Benner 26:12
but just based on the belief that if if you're, if you have diabetes, then your mom has it. That's basically how they thought, right? And since your mom didn't have it, then you couldn't have it. And that was it.

Barbara Westberg 26:24
Or at least someone in the family. My mom was one of nine, one of them. Clearly would have had to have been a diabetic. You don't have OGS like that, or my grandmother was one of 13 Somebody so that was should have had diabetes. That was

Scott Benner 26:39
the conventional thinking back then. Yes. How about that? I wonder Do you know if any of those people had other autoimmune issues?

Barbara Westberg 26:46
Oh, yes, definitely. There's a lot of paper in hypothyroidism and

Scott Benner 26:55
self anatomy celiac. With even thought of it that way back then, or was it just like grandma runs to the bathroom after dinner? Like, you know what I mean? Like, I wonder if they even paid attention to celiac in the 70s? Good question. Isn't it? Wonderful? I mean, I'm looking at this photo, I pulled up of gas lines, and all I'm telling you is that cars are way better now than they used to be. Some of them were so big and like, just unruly, just really large. You see, there's a Cadillac here that looks like a small boat. Anyway, yeah, that's just very interesting to me that, I wonder. I wonder if that was, like prevailing wisdom medically, or if it was just like, a thing that people thought it's a I mean, because you hear it all the time, like, oh, it runs in families. I'm like, Yeah, can eat you know, doesn't mean it has to, but they were willing to kill you over that belief, basically, you know,

Barbara Westberg 27:56
I have a medical book that my my in laws are moving. So they're downsizing. What they have, and this book is from, I think it was maybe the 60s, like one of those home diagnosis things before WebMD even existed. So you can look up, you know, hives or whatever. Yeah. So first thing I do is look up diabetes. clearly states, it runs in families. It was it was being trained that way. That's what they thought

Scott Benner 28:33
that makes sense. So you just you were in DK like significantly. Yes. Yeah. Gotcha. But do you remember? Does anybody ever talk about uh, how long were you in the hospital before you left?

Barbara Westberg 28:45
I think it was five days. My mother's passed away. So there's really no nobody has a clear focus on you know, what she went through and, and what she did to get me home, so. But yes, then arriving home, even though they had set the expectation that I would have injections. I was not having that. I'm not in the hospital. I'm at home home is not where you get shots. Absolutely not. This poor woman battled me. It. It had to be a year or two that she would have to chase me around. I refuse to give myself injections. And finally, on my I think it was my 11th birthday. She said here it is. I've, we've trained you, we've given you all the skills that you need. You've practiced you're gonna do it today or you're gonna die. Hi. Because I'm not chasing you around anymore. She had enough stability.

Scott Benner 30:06
She had absolutely had enough like that. Did you do it?

Barbara Westberg 30:12
Of course I did. I'm here to talking to you now. I

Scott Benner 30:15
mean, did you have to fight this you have to fight whether you just did you just kind of capitulate?

Barbara Westberg 30:19
Oh, she just left me there. She left me there at the kitchen table with the insulin and the syringes and walked away. And I have no idea how long I was there. But eventually I gave myself insulin.

Scott Benner 30:34
You know, it's not easy. Not the first time for sure. And you really fought even as a little kid. You're your principal?

Barbara Westberg 30:43
Yes, yes, very much. So this is this is not what happens in your home. This happens in the hospital or the doctor's office,

Scott Benner 30:51
we don't do hospital stuff in the house. And we don't do house stuff in the hospital. And that's the rule dammit.

Barbara Westberg 30:56
Yes. And go ahead and try and make it fun and cool and sciency that I get to take five drops of urine and put it on a little thing in a test tube. I was not having that either. And that, like that was when I decided science is not for me.

Scott Benner 31:16
Your poor mom, I get to see your mom like, Look, honey, it'll be fun. Your she doesn't believe it when she said, By the way, you know, and you're like, Miss not fun, leave me alone. But something else. That's a crazy story. So you say that you really turned to a tighter idea of management, when you were thinking of having a baby or when you found yourself pregnant, which wasn't

Barbara Westberg 31:40
what I found myself pregnant. Like, oh, I am responsible not just for what happens inside of me, but someone is residing inside me, and depending on me entirely. So let's take the crash course and how to be a good diabetic.

Scott Benner 31:57
Did you have to be told that by a doctor? Or was that a realization you had on your own?

Barbara Westberg 32:02
It was a realization I had on my own. So something

Scott Benner 32:04
that you're aware of, but just never allowed yourself to deal with prior to that?

Barbara Westberg 32:10
Um, well, it was. There were no negative outcomes. You know, I was completely horribly mismanaged. My a one C's were horrific. But I got up every day, I did everything I needed to do. I went to school, I graduated with honors, I had a job, I, you know, drove a car, I had a life. It didn't seem like I needed to do these crazy restrictive things. And in my head, actually managing my diabetes was crazy and restrictive. And then as you learn to manage your diabetes, it just opens up more and more freedom, your ability to do more things, go more places, eat whatever I want, where I know, there are some diabetics who still kind of sway away from that. But once you figure it out, it's like, oh, what else can I take on? This is a puzzle. What's next? Will I ever master pizza?

Scott Benner 33:23
This is always my contention. That it is once you understand, you know, once you have the tools, and you, you know, have some concepts, it's far easier to do a good job that it is to not, you know, it gets so much effort. Well, I think it's so much like mental effort of feeling like you're failing all the time and constantly worried about what your agency is going to be or what your blood sugar is right now. I just think it takes more time to do it in a way that's not beneficial than it does to do it in a way that is beneficial. But having said that, if you don't have the tools, if you don't know the steps to take that kind of presents a third prong to the problem. And that one is that you're putting in all this massive amount of effort with no no positive feedback at the end. You're not You're not reaching any any kind of a desired end to what you're doing. So it just feels like you're working, working working really hard, for no reason. But you put so how do you figure it out? Like what year is that that you're that you're pregnant?

Barbara Westberg 34:28
Oh, that was? So my daughter was born in 93. So I was pregnant. 92

Scott Benner 34:37
And what does it look like getting the information you needed? Like where does it come from?

Barbara Westberg 34:43
I'm my endocrinologist, okay, which was an interesting jumping through hoops. I had to be diagnosed as pregnant before. I could, like go to these prenatal visits with my endocrinologist. So learning to manage the health management system, the health insurance system was like, Oh, okay. I know I'm pregnant, but I need to officially be diagnosed as pregnant. So in the interim between me knowing I was pregnant, and me being allowed, or Yeah, being allowed to see a doctor and have it covered, I took a ride in an ambulance because in the first trimester, my insulin sensitivity skyrocketed. So I was giving myself these wild shots. And my body was very sensitive to these large injections that I had been taking to cover what I was used to. And so then, after taking a ride in an ambulance and being hospitalized for a short time, they finally figured out that I am, I was a type one diabetic who was also pregnant.

Scott Benner 36:07
Definitely pregnant. So are you saying that in the beginning of the pregnancy, you were using more insulin? And then at some point, maybe that fluctuation of hormones, like died down for a little bit, and then suddenly the amount you were taking was too much? Was that this? Is that how that went?

Barbara Westberg 36:23
Yes. And I don't know if this is still true, but when I was when I was pregnant, they told me your first trimester, you're going to be sensitive to insulin, your second trimester, pretty average, and then your third trimester, you're going to be wildly resistant to insulin. And turned out to be true in my case, and yeah, it was. So

Scott Benner 36:49
it sucks. But I mean, at least you I mean, you figured it out. Right baby was born well and all that stuff. Yep.

Barbara Westberg 36:57
Short time in the NICU, but then knock on wood has not seen the inside of the hospital since

Scott Benner 37:04
Wow. That's excellent. Good for and that's a shame. How old is that kid now?

Barbara Westberg 37:11
29.

Scott Benner 37:12
Wow. I'm sorry. Made you say that out loud.

Barbara Westberg 37:18
It is kind of shocking.

Scott Benner 37:19
Yeah. No, I know. i You're like an adult. Does she have her own kids? No, not yet. At least that'll keep you from feeling old for a little while. Yeah, that part is my kids. My oldest is 22. And it doesn't strike you yet. I'm thinking the age is going to be like 25. When I say that, I'm gonna think oh, God, like, I need a rocking chair. If he's 25, you know? So okay, so you you got that figured out for the pregnancy? But did it stick with you after the pregnancy? Like, did you like turn a corner, so to speak?

Barbara Westberg 37:56
A little bit multiple daily injections, but my monitoring of my insulin, like doing my blood sugar? I thought, Oh, I only need to do that if I don't feel well. Which is so wildly untrue. Because as you become adjusted to a higher blood sugar, you feel fine. Or? Well, that's an interesting thing to claim. Because I don't know what fine is I haven't been fine. So what fine would what a non diabetic person would feel like, versus what I wake up in the morning and feel like I have no concept if, if they're the same thing, because I haven't lived in a non diabetic body in so many years. But it wasn't something where I was like, oh, yeah, this is diabetes related. If there was something that I'm like, Oh, I feel like I have blood in my veins. And I am struggling getting out of bed in the morning. I would think Oh, is that that you haven't slept a full night since your child was born? Or is that actually your blood sugar's high? And I would test my blood sugar and correct then, but

Scott Benner 39:14
you had to feel almost crippled to pay attention to your blood sugar.

Barbara Westberg 39:17
Yes, yeah. And, and then I met a diabetic mentor. That that was the turning point.

Scott Benner 39:26
How does that happen? Um,

Barbara Westberg 39:28
she was a co worker. And she took me by the hand and said, What are you doing? I used to, we went to lunch, and she knew I was type one. We had bonded on that. And I got up to go hide in the bathroom and test my blood sugar and give myself an injection. And she said, whoa, whoa, whoa, wait a minute. What are you doing? And I had the first like, honest interaction in a restaurant with another diabetic, where she said Look, if the waitress has a problem with needles, that's her problem. My problem is, I'm a type one diabetic, and I need to eat lunch, I need to test my blood sugar and give myself an injection. And I have no apologies. And my hair blew back and rainbows and birds were singing. And this was the exact person I needed to walk into my life to show me that the, the hiding. So when I was diagnosed, one of the things I was coached on, was keeping this hidden. It's a secret, you could be discriminated against, you could like in a job interview, you would never reveal this because clearly they're not going to hire you. You keep this hidden. Whatever you do, don't tell people is how I was raised. And then I meet this person who is completely open. Yeah. And that's what shifted. Do you think 100% was shifted?

Scott Benner 41:06
Do you think I'm not? I'm not apologizing for this. But I'm trying to find out if you think was that accurate, though? I mean, as far as getting a job and not being discriminated against? Was it smart to to hide it in that regard? Or do you think it was a, it was a like a monster that didn't really exist? Something people said,

Barbara Westberg 41:26
um, I'm not clear. But I do know that the job that I have today, during my interview, we talked about it and my boss's daughter is also has type one of the job then. Yes. So having, having the openness, I think brings you what you need. If you're if you're not open about what you need, and where you are in your life. You know, people talk about you show up at an interview pretending to be something you're not. And then you you think you have this horrible job? Well, they hired somebody you weren't. If you're not authentically you at your interview, they're hiring somebody that wasn't right for the job, correct? Yeah. So now I'm authentically me, to the point where I have a diabetes tattoo on my wrist that, you know, it's, it's out there. Yeah, I do not hide it.

Scott Benner 42:31
I want to be clear, I don't think hiding is a good idea. And I would Moreover, say that if you can't get a job because you have diabetes, and that's not a job you want to begin with, just like I would say, you know, if you are dating a person who doesn't want to be with you, because you have type one, and that's not the right person to be with either. I was just wondering if like contextually at that time in the world, if it was a if it was a legitimate concern that you could you know what I mean? Probably, I mean, it probably was, I'm being

Barbara Westberg 43:00
honest with the Americans with Disabilities Act come into play. Oh, no.

Scott Benner 43:04
But window, When did people start paying attention to it and believing that they could be, you know, pressured over it? You know what I mean, like that, just, let's see Americans. Disabilities Act of 1990. I think it's called the Americans with Disabilities Act of 1990, or the ADEA is a civil rights law that prohibits discrimination based on disability is July 26 1990. It was a factor.

Barbara Westberg 43:30
Oh, and there you have another thing, like, the, you know, my, my parents tried to empower me and say things like, you're not disabled.

Scott Benner 43:42
We call it the Americans with Disabilities Act. And you're like, I'm not but by by the way, if you watch online, that's a that's a sensitive argument. You know, am I disabled if I have diabetes? I think the most reasonable answer I've ever heard is, listen, there are rules and laws that protect you, if you have diabetes, just because they use the word disabled doesn't mean you need to think of yourself as disabled, but you should take advantage of the opportunities and protection if you need it. Exactly. Yeah. But I do get that not wanting to, there's no way my daughter thinks of herself as disabled. And at the same time, she obviously is, you don't I mean, like she takes insulin, if she has too much of it. She gets low. If she gets too low. She can't take care of herself. I mean, that's a mean letter of the law. That's, that's a disability. Do you agree? Yes. Yeah. Right. But so I think it's two different thoughts. I think it's a I think it's a legal distinction. Or, and it's a but it's also a way that people think of themselves I think you can I think you can agree with the legal distinction without thinking of yourself as disabled. That that's my thought, but I don't I you know, I don't have diabetes. So I'm not the right one to, to think that one through I don't think. Yeah.

Barbara Westberg 45:05
And I never went to school and had a meeting. And it just,

Scott Benner 45:15
you didn't have a 504 plan?

Barbara Westberg 45:17
504 plan? Yes. Never had one of those. No, not once.

Scott Benner 45:22
So. So if if you were a child, and you ran into something that was made more difficult by diabetes than what did you do if you weren't able to just raise your hand and go, Oh, I don't know if you remember. But I have a document that says, you need to give me 30 more minutes to take this test. Like, how was it handled before things like that existed?

Barbara Westberg 45:40
I either raised my hand and said, I need to go to the nurse. And if my blood sugar was low, we had juice boxes there. Or I didn't, there. There was, you know, just personally needing to go to the nurse for low blood sugar was the same as somebody else needing to go to the nurse because they had a stomach bug and or a fever.

Scott Benner 46:09
Yeah, so an illness you had in their mind? You had an illness? And that was that? Yep. Yeah. Listen, I know, there's a lot of things, right pressure makes diamonds, stuff like that. There's an argument to be made, that the world is not fair. And you have to learn how to live in it. And there's an argument to be made that you you shouldn't be able to just, you know, discriminate against people because they have issues that other people don't have. I mean, I I agree with the whole spectrum of that conversation. To be perfectly honest. I don't think there has to be a I don't think you have to pick a side on that one, I guess, is what I'm saying. Yeah, cool. So all right. So wait, and so your your job out of your event planners, you did event planning, right when you were first, like in college with that, that internship, and then everything like that, and then you've moved it towards, like charitable, that do you still work in the in the not for profit space,

Barbara Westberg 47:14
not any longer. But while I was getting my degree, I had to write a paper about an event. And the event that I was paired up with, was an outdoor music festival. And as a student, you know, I've got my all my thought process in line of what I'm going to do and say and write the paper. And I show up at this outdoor music festival. And I love music. And I was just so thrilled to be there. So happy when it started to rain. And then it started to rain more. And this outdoor music festival was canceled. And I learned more about planning and outdoor event based on this poor organization who had like their whole business on the line to pull this off. And so at the end of it, I volunteered to go back to the office and help them answer the phones as they're trying to figure out what they're going to do with this festival that is literally falling apart with every additional raindrop. And like this is a great learning experience. I'm more than happy to answer the phones. And I wrote the paper. And after I wrote it, I thought, hey, I should send it to them with a thank you note. And I sent them the paper and didn't hear from them didn't hear anything. And then another event came up that was in conflict with a annual event that they were responsible for and they needed more staff. So they called me up and I thought this is great. I'm patting my resume when I get out of school. I'm gonna have all of this to put on my resume. And they had me sit down and fill out tax paperwork because they were paying me. I'm sorry, you're paying me. I was gonna volunteer. So I became what was affectionately referred to as a weekend warrior when they had they had events, they, you know, they had a small core staff of people that worked in the office planning these festivals, and then they would bring the weekend warriors to, you know, round out the staff during major outdoor music festivals. So I've worked the festival Block Party. I've worked a now defunct music festival called the Tempe Music Festival. I've worked OCC Orange County Choppers, they did a festival in the Tempe area of Arizona. I was the very first female quadrant manager for the Rock and Roll Marathon series where I was responsible for an entire section of the marathon. Managing the stages and sound and lighting and all of that. And this came out of me needing to write a paper. And in addition to that, I was working for a nonprofit organization. Ooh, sorry, if you can hear the dog in the bathroom.

Scott Benner 50:38
Say, are you being attacked?

Barbara Westberg 50:40
Yeah. So

Scott Benner 50:43
dogs like ladies in the closet with with a ladder, something must be wrong. You're fine.

Barbara Westberg 50:50
So I'll try and talk over. So my day job was raising money for a nonprofit organization through events. So I've planned marathon training programs and let me see if I can actually convince her that we're not under attack. Yeah, okay. Sorry about that. No, you're fine. Dogs are gonna dog.

Scott Benner 51:25
Yeah. I mean, it's our fault. We put you in a closet. So there's no way she's not like, this isn't what happens usually. boss thinks something's going on. Where she's got to take a poo. And she's just like, lady, listen, I'm gonna do it on the floor. If you don't come talk.

Barbara Westberg 51:42
Unfortunately, our landscapers are here. So we are in full dog emergency mode, yo,

Scott Benner 51:48
oh, my god. Gutter Cleaning at my house. My dogs just run from window to window barking the entire time the gutters are being cleaned. They won't stop. They just I don't know something about the water splashing around in those little tin gutters or whatever they're made of it makes them crazy. Anyway, so let me leave. I'm trying to like wrap my head around, like all of what you've done in your life, like so you do end up just moving kind of from org to org? Or do you stay with a place for a very long time? Or are you kind of like a hired gun? How does that all work?

Barbara Westberg 52:25
So I am a independent contractor for these outdoor music festivals. But then I've always had a day job. There were a couple of times where, you know, I had some space between jobs. But I've worked for two nonprofit organizations. And now I, I picked I picked up and moved across country right before the pandemic and found a job that is absolutely fantastic. But I still plan events in this job. It's interesting. I'm a Marketing and Business Development Director for a mortgage company. And I'm planning an event for our clients a client appreciation event. So even those skills that I learned back in my days at ASU and but I was I worked as a contractor for this organization that did these outdoor music festivals. Gosh, probably 15 years. Well, they called me recently they were doing something here in Texas. And it was kind of at the height of the pandemic. So I said no, thank you, but love that they still

Scott Benner 53:56
thought of you. Yeah, you know, I was contacted once by a person who said that they wanted to put on an event where I was the speaker. And they had all these big ideas. And it was I mean, it was a little overwhelming all the stuff that they thought they were going to do. And I kept saying, like, I don't think I can attract that many people to an in person event. And they were like, No, you can you can I was like, I was like, I felt like I was being tucked into something you don't I mean, and I just thought like, I finally I said, Okay, well, you know, if you think we can get enough people together, that it'll pay for itself. You know, I don't want anybody to like I don't want anybody to work for free. I don't want you know, that kind of thing. And then I it became obvious that the person was like, look like this isn't totally out of the kindness of my heart, like I'll plan the event, but this is how much we're charging and I'm taking a piece of it. And I thought even like I was like well, that's fair that they you know, all that is obviously fair. But then the number they came up with was like shocking to me. And the conversation started going like I think people would pay this much and the I said, No, I'm not doing this. I was like, I'm not like you're not taking in my name, you're not taking hundreds of dollars from people to come to a thing. And it was interesting how they, they put it, I'm not saying this is you, I'm just saying, like, it's making me remember this whole like thing. They're like, Well, if we charge this much, and this many people come, here's how much money you're gonna get. I'm like, I don't care. I'm I'm not doing that. So I left the situation disappointed, because I thought the idea was solid. But I was not comfortable with people having to spend so much money to do something like that. Anyway, it's, uh, I think this is, I think this podcast is a much better way of reaching people to be perfectly honest. But, I mean, I would do it, you know, I mean, like, I can see where it would be fun. Like, I'm trying to imagine myself. And there's all these people that have been on the show that could come and speak as well. And I think it would be cool. And I think it would be helpful. And I would love to gather up a bunch of people with diabetes and let them all be in one place and meet each other that I think is that I think would be amazing. But you know, I don't know, it. It seemed like a lot of money to me. So anyway.

Barbara Westberg 56:11
Yes, I definitely the value of being in the community. That was the the difference for me between this is a secret, it's important that you don't tell people you'll be discriminated against. And actually seeing people in the diabetes community, being open about it and being helpful and being you know, it's, it's hard to talk to somebody about how do you manage your diabetes, when you're not saying the word diabetes? And you're pretending you don't have it?

Scott Benner 56:47
Yeah. No, I would love I mean, as you were talking earlier, about, like a music festival, I thought, how cool would it be to just have a, like, a thing where just people with diabetes showed up? And like nobody else? You know what I mean? Like you had, you know, this, this exists? Do I know them? I imagine there's, like, I know, connected in motion does like a camping thing. And I know, places that do stuff like that. But even at that, like, I shouldn't have brought up somebody by name, because now I'm gonna say something that sounds reductive. And I don't mean it that way. But like, I don't mean, like a couple 100 people. I mean, like, I don't know, like something massive, you don't, I mean, in my mind, like, things aren't worth doing until they're like, so many people like even the podcasts, like, if I didn't reach that many people, by now, I'd kind of feel like a failure, I'd be like, I'm not gonna do it. But it's that it reaches so many people that makes it seem it I don't know, it's how it's how the value of the scope of it is part of the value that I think about. Because I know, I mean, you you're a marketer, you know, to like the, the rule of 10s is, is so incredibly real. You have to say something to somebody 10 times before you can get one person to blah, blah, blah, and like, you know, so I always think about, like, if I'm going to help somebody, if I'm going to help somebody live a healthier, happier life, I have to reach this many people to help this many people. And I don't know why that that's how it always strikes me. But no, I know, there are events, and I know people love them, like I do. I'm not and I'm not minimizing any of them. I just like if I do it, I want it to be like, I don't know, I want it to be like a Rolling Stones concert in the 80s. You know?

Barbara Westberg 58:31
Well, the greatest thing about your podcast is that even the offshoots of it, the Facebook page and the comments and things like that, it when I first kind of started tiptoeing into the online existence of diabetes, it was all darkness, and an anger and mismanagement. And there's, it's just so bright and empowering. And then just see other people say, Well, I did this and I did that. And none of it is, you know, nobody's ever showing up to say, this is was the worst day of my life as a diabetic. And you're probably as a newly diagnosed diabetic going to have all these horrible days. It's more of a you can have a great life. And here, here are the practical tips on how it's, you have it a joy around what you're doing and and I appreciate the passion and you're giving of this information to all of us out here who just you know, eat it up.

Scott Benner 59:56
I just like I Well, thank you. First of all, I think All I really do is I apply my attitude to everything. So I, you know, I hope I'm never in a terrible situation like this. But I think if I, if I had a car crash, and I was upside down in the weeds, I'd be joking about it while I was hanging there waiting for somebody to come get me up, I'd be like, Well, I've definitely screwed this up. And I just, I don't know a way to I don't see the value in in. I'm just gonna say what was me. But that seems like I don't mean that. I just mean like, I think what I mean is that good things happen and bad things happen. And I don't change who I am, depending on what's going on around me. So I just keep being me. And then I think that over time, that's, that's kind of permeated the podcast. And then when you collect people together, like as you know, using that Facebook group as an example, suddenly you have 22,000 people there who are all sort of reasonably like minded about attitude, or they see it, and they want to be part of it, they look and they go, You know what I would like to be happy. And I'd like to be able to joke around in a bad situation and not feel the way I feel right now. And in that way, I think it can look like I think this podcast and the community around it can look like hope, and something to kind of strive towards. And I don't know, like as you were talking, I thought, like, what if we could get like 510 1000 people on a fairground, and just get up on a stage and bring people up all day long. And talk to them, you know, just over and over again, just new people, bring them up, let them see each other. Let them be in a place where everyone has diabetes, and it's not weird, and everybody's injecting it dinner. And nobody thinks twice about it. And were like, I think if you could pull enough people together, because what is normalcy? Right, like, normalcy is just the it's the, it's, it's most people doing a similar thing. And so if you brought together 10,000 People with type one diabetes, then type one diabetes is normal. And then you could go back into your own life and not worry about it when you don't see it around you all the time. I do think kind of like virtually that is what this podcast is a little bit too. But I think it's a lot of things. I don't even know that I'm the best person to tell you what this podcast is. Which is kind of odd. That makes sense.

Barbara Westberg 1:02:31
Yeah, yeah. And I love that you've got things categorized so that you can kind of find your way through. Because there's a lot of content out there.

Scott Benner 1:02:42
It got too big. Yeah, I had to do something. It was because my answer just listen to the podcast that started not being so you know, so possible, you know, Episode 250 and 300. And even the other night, I was buttoning up an episode that'll go up soon. And you know, I mean, I start every podcast the same way for years. I'm like, Hello, friends, and welcome to episode and I did that the other night. I said, Hello friends and welcome to episode I tripped over my words. I was like 650 Like, I was like, wow, was there that many? You know, like, it took me by surprise. And and so I you know, thinking about that when people are coming in from the outside? I know they're going to see those numbers and think, Well, I don't know where to start. And so at some point, you know, we had to give them some idea of where to start. And to be perfectly honest, had a lovely woman named Isabel not contacted me once and said, Do you want help with this? Like, I would still be trying to do it on my own. And she's like, you know, these, she's like, these episodes go together. And these go together and these go together. And I was like, This is what I need. I need a woman I need somebody with some organizational skills to to look at it and not only organizational skills, barber but I'm so busy making the podcast. Like I don't even know what it is sometimes. Like there are times when people ask like the other day someone said online Has anyone been on who has Lada? And in my mind I thought yeah, probably like a dozen people. But if under penalty of death, I couldn't have come up with watch episode they were in like I did not I cannot. I'm the worst person to tell you about the podcast. I can make it I just I can't keep track of it. I hope one day that it gets big enough that I can put at least a tiny organization around it because I do think it would help it grow more. If there were some more people facilitating even little things like social media posts or understanding that episode 640 Whatever has, you know, someone in it with LADA? I don't know like that, that may be will never happen, but if you dropped a million dollars on me, I would definitely hire a couple of people. You know what I mean? Oh, yeah. Anyway, I don't know. So this thing helps you when did you find it?

Barbara Westberg 1:04:58
Um, Probably, it was definitely during the pandemic.

Scott Benner 1:05:05
What made you move during the pandemic? Were you moving towards freedom? You said, I heard you here to say, Texas, were you like, I don't want to be locked up or what made you move?

Barbara Westberg 1:05:15
Oh, my husband and I met and married in Dallas, and then move to Phoenix. And that's where I went to school. A little bit. Well, we, when we were in our 20s, the one thing we agreed on was Austin, Texas is the greatest place on earth. And it didn't seem like a practical thing for us to move there. And so we agreed we would retire to Austin one day. And then after my mom passed away, I kind of didn't have my mom around the corner. So it was like, Huh, I'm living here in Phoenix. I have a great life. But what I really want to do is retired Austin, maybe I should just move there and set myself up for success. So that when I retire, I'm already living there. Like, why would you put what you want most in your life on hold until you retire?

Scott Benner 1:06:22
Yeah, I think about that, when I'm saving money for my kids all the time. I always have that feeling in the back of my head, like, my wife and I are really hard workers. And we don't do much with whatever we have we make a pile you don't I mean, we try to keep it Keep it keep it because I think in our hearts we were like, like, even though this feels incredibly, I don't imagine this would happen is what I'm saying. But what if our ends up being like a near dwell? And like, I want to be able to leave like, like finances for to manage her diabetes with. And then once you have that thought you think but I also have another child, like how could I leave money to one kid not to the other kid. And so then my life becomes this like pursuit of making a pile as big as I can to give to my children. And always in the back of your head, you're like, Well, when we retire when we get this done, then we'll do this. And I realized what's going to happen is I'm gonna get so old, it's not going to matter to me anymore. And I'm not going to want to do those things. And then my whole life was me building an anthill to give to somebody else. And so I'm trying really hard to be more like you. And I'm very, very impressed that you did that. How old? Are you when you did that?

Barbara Westberg 1:07:31
Um, I was 49. Yeah,

Scott Benner 1:07:35
good for you. That's excellent.

Barbara Westberg 1:07:38
And then had a complete career change, and then the pandemic hit. And it was like, Oh, wonderful. I'm in the city of my dreams, and not leaving my house. I'm not making any friends. I'm not meeting new people. I'm not going to concerts, and you know, the greatest musical city in America. I'm just sitting at home listening to podcasts.

Scott Benner 1:08:08
Well, at least it's my also, would it have helped you to know while you were listening to my podcast that if I ever go to a live musical event again, the first one I want to go to is Gary Clark, Jr. and I know he he lives in Austin. So that's what made me think to say that to you. That would be the that'd be the that would be my dream. If I if the next time I go to see live music. So

Barbara Westberg 1:08:31
Well, there you go. Now we have the location for your

Scott Benner 1:08:34
I can come right come to it.

Barbara Westberg 1:08:37
And keynote speakers leading up to the Gary Clark Jr. Musical chairs on top of the days of education. So you're

Scott Benner 1:08:49
saying that because you've made these things before, and you're like, we could probably make that happen? And I'm thinking like it never happened. I do. I do think though. Like, I wouldn't do it in a in a classic way. Like if I had an event like that. I don't know that I wouldn't just keep bringing people up on stage and just keep talking. Like, there's a part of me that realizes that some of the best episodes that Jenny and I make are when Jenny and I just start philosophizing about diabetes. And even when we're not talking about something specific when we just sort of like, it's almost like, it's not really like, it's not flight of fancy but it's, you know, you start a conversation, you see where it goes, you don't worry so much about what the perceived topic of it is, but almost like what ideas can we mind from this conversation? Like new ways can we think of to do things or examples that might click in people's heads? Like, I don't know, like, in my mind, it would be like, I don't know, like a like a live Oprah Winfrey, except I'd be Oprah. And then and I wouldn't give you anything. And then people would just keep talking and talking and enjoying it. So musical breaks would be nice. But I don't know, I think that I guess that's actually what I'm doing with the podcast, if I'm being perfectly honest, it's just bringing people out having conversations, I got pitch somebody the other day, and I was like, I don't want to do this. Like, I don't want this person who's been in the diabetes space for so long that everything they say, sounds rehearsed, and they know what they think. And you try to like, you try to go down another pathway and have a different conversation, and they won't go with you because they're worried of who they're going to offend. Or I would just rather rather talk to you, and, you know, other people who have diabetes. To me, that makes more sense.

Barbara Westberg 1:10:41
It's, it's fun, it's fun to hear real live people who might be your neighbor. It's great to have people who are trained, as well as people who are actually living it. For me, one of the things that I, when I learned about the podcast, I was like, oh, it's not for me, I don't have a kid with diabetes. And then I, I thought to myself, do you have any idea how ridiculous that sounds? Course it's for you. So and honestly, I, I can't even imagine what it might be like for a parent of a newly diagnosed diabetic child. You know, when I was diagnosed, there wasn't much they could do. So you know, you got sent home with a couple of guidelines. And now you actually have choices and options and the pressure to research and find the right thing for that.

Scott Benner 1:11:46
It could be Yeah, yeah.

Barbara Westberg 1:11:51
I mean, even if your warranty is up on your insulin pump, and you're like, oh, do I just go with what I know, do I stick with that brand? Do I try something new? You could go down a rabbit hole for days before pulling a trigger, and then still not being completely sure that you made the right choice, right?

Scott Benner 1:12:11
No, I agree. It's, it's a wealth of possibilities. But if you don't have somebody to like, stand in front of you go, Look, here's this one. And here's this one. Here's the differences. You know, which makes more sense to you? What do you care about more? Okay, great. Well, then try this. And now the companies are finally doing like, like, they're doing free trials, which I don't know why they couldn't do that in the past. But I think that was more of a insurance thing. Or I'm not even sure like, how it's gotten better. But I know, Dexcom and Omnipod are both offering free trials now. Which I think is amazing. Because I would like the comfort of trying it and saying it's not for me, you know, not the feeling of like, I have to decide and then whether I like it or not. This is my insulin pump forever. You know, like, that's not fair. It just

Barbara Westberg 1:13:03
unless you have a million dollars and can just say, Oh, not for me right now go buy this other one completely out of pocket. Oh,

Scott Benner 1:13:11
whimsical, like, Oh, whatever. Yeah, I mean, most people can't do that. Even if they could, they shouldn't have to, you know, it's uh, but it's interesting, the way you put that, like, when you were when you were diagnosed, there was one option. It was this, do this pee on that. That's diabetes. At least there was nothing to worry about. You knew you were doing the only thing that existed. Right. Right. Right. Wow. I know that you came on because you have an interesting career. But and we didn't talk about it at all. But I don't you listen to bias, you know, I didn't care. Although I did recently, based off of that call for people with interesting careers, did a really cool episode that nobody's heard yet with a truck driver, which I thought was neat. A woman who was a backup singer for some pretty great bands years ago. And a stripper. So it was smart to ask for people with different jobs. But I found your conversation interesting for a completely different reason. I appreciate you doing this. Is there anything that you wanted to say that we haven't talked about that? I haven't gotten to?

Barbara Westberg 1:14:20
Um, well, we definitely didn't talk about my career at all. But again, it's been so great talking with you. I don't even care.

Scott Benner 1:14:32
I'm glad. Yeah, just I appreciate I want to make sure we didn't like leave anything out diabetes wise that that you wanted to bring up? I didn't even ask you a lot of things. I normally ask people about your kids. And if there's you know, did you end up being autoimmune with your children? No, no.

Barbara Westberg 1:14:53
I am. I am the lonely diabetic and in my family Like, I used to joke that everybody else had to wear glasses. I got diabetes, but now

Scott Benner 1:15:08
I have to go pick up my new reading glasses this afternoon, which by the way, I thought I last went and bought new ones and then found which

Barbara Westberg 1:15:18
which, oh, sorry, totally, I completely spaced that my sister had gestational diabetes. Okay. And she. She said, I don't know how you do this. Like, she knew there was going to be an endpoint to her diabetes? Yes. Like, I don't know how you put up

Scott Benner 1:15:38
with this. That's the alternative. That's a problem. Right? So

Barbara Westberg 1:15:42
yeah, well, there you go. Yeah. So I would rather deal with this and deal with it. Well, then to deal with the alternative, right.

Scott Benner 1:15:51
Okay. Hey, do you think that based on the years of how you grew up in knowing now how technology and insulin has changed everything like that? If you woke up one day to a complication? Would you be gobsmacked by it? Or do you think you'd be like, Oh, well, that makes sense.

Barbara Westberg 1:16:07
Um, you know, it's kind of like cancer, it doesn't matter if you've got family history or not, it would be shocking. Yes, yeah. So, um, am I aware that there are things like I, I'm always on top of my screenings, you know, even even my cancer screenings? You know, I'm on top of that. And I don't think anybody's ever prepared for a diagnosis. But it's, it's so common, that, that if you get out of this without some sort of diagnosis in your lifetime, that would be more shocking than, Oh, you you've survived this, or you survived that, are you treat this or you treat that? I don't want to add anything else to my list of diagnoses. But I feel as empowered as the next person in being able to handle it. And it might actually scare my health care providers, more than me to have diabetes as a complication that goes along with Does that make sense? Yeah, they

Scott Benner 1:17:33
even you, you're looking to them, like you're the, the the exception to the rule, right? Like it's just because it's going so incredibly well for you, honestly.

Barbara Westberg 1:17:46
One of my biggest fears was I would get COVID and be on event and nobody would know. What the heck to do to manage my diabetes.

Scott Benner 1:17:59
Yeah. Oh, wow. Yeah, and it definitely wouldn't go well. It really wouldn't. IT management and hospitals is is not not stellar. They're more worried about your emergent problems than the the diabetes takes a backseat for reasons that I don't completely understand. And yeah, and then you could feel incapacitated that that really did run through your head, huh.

Barbara Westberg 1:18:21
Oh, I was absolutely terrified. Terrified. I did not leave my house for a very long time. And my husband is a health care provider. So when he got home from work he would strip in the garage, walk through the garage door into the guest bathroom and shower and I would go nowhere near that bathroom and nowhere near his clothes.

Scott Benner 1:18:53
Barbie married a long time it's easier to get a guy naked than that. You know you don't

Barbara Westberg 1:19:01
Yeah, I have been married a long time.

Scott Benner 1:19:03
You didn't have to trick him you would he would have done it if he just asked. Actually, you know some guys that just do it if you don't ask so. But yeah, you were that worried about it? That's I makes 100% sense to me. I really I'm assuming you're double and triple Vax, you got your booster, got a booster and all that stuff?

Barbara Westberg 1:19:26
I absolutely did. I drove two hours to get my first vaccine. Wow. Because prayer weren't anything available in the area that I was in. So I was committed to that. And I'm just now coming out from under my rock crawling out from under it and going places and visiting family and and hugging people and seeing concerts and also being you know, cautious but no longer hyper cautious.

Scott Benner 1:19:59
I'm starting to feel a little better.

Barbara Westberg 1:20:03
Yeah, a lot better Good.

Scott Benner 1:20:04
I'm glad I just got back from Florida, I went to a baseball event where I was around a lot of people outside, we rented a house with some people. And I mean, not that my anecdotal like story is evidence, but I got on a plane. I went through an airport, I stayed in a house with 20 people, I watched a bunch of boys play baseball, you know, on a giant field where, if I'm, if I'm counting, right, there were six baseball fields. So there were people watching on all those fields, you know, etc. Back on another plane. Nobody got sick. So I, I'm hoping that things keep trending in that direction. But it would be really nice, because I don't want you or anybody else trapped in their house. Especially as you're trying to build, you're like this is it? Right? You're trying to build up a little bit? And then and then get yourself nice and retired and enjoy Austin and, you know, do your thing. So yeah, well, we should all knock on wood that this doesn't go back to the other way. Because if they they locked me in here, one more time, I'm gonna, I'm gonna be like, I lose my mind. I'm just starting to get like a rhythm to my life back again. You know what I mean? Like, it got so weird. We're just 24 hours, turned it into another 24 hours didn't even matter what day it was anymore. And something about that was not good. For certain. I'm starting to feel like, this is the weekend. These are the weak days. You know, these hours are when I work these hours. And when I don't like I'm finally getting that that kind of delineation back again. And I think it's really necessary. So anyway,

Barbara Westberg 1:21:46
I turned 50 during the pandemic, and you know, hit I'll always invent envisioned a big trip. And I joke with my husband that for every month, passed my 50th birthday, the trip is just getting more and more grounded. Honestly, yeah.

Scott Benner 1:22:08
He better be You better be saving money off, right? You're gonna go get go hop and across Europe and do something really amazing. All right. Well, I really appreciate you doing this. And taking the time, I had a wonderful time speaking with you. And I can't thank you enough for for telling me Elvis and sharing these things with me.

Barbara Westberg 1:22:26
Oh, thank you. I appreciate what you do. Big fan?

Scott Benner 1:22:31
Oh, are you? Does that actually feel like that? Like that I'm a fan know that you just don't like I am weirded out that we're just not two people talking that you see me as like something other than just like a guy.

Barbara Westberg 1:22:47
Oh, like I've elevated you to celebrity status,

Scott Benner 1:22:50
or you shouldn't do that is what I'm saying? You most assuredly should not do that. The rest of my day, you would not want to be involved in is very boring. So yeah, I'm

Barbara Westberg 1:23:02
just trying to get you to hire me to do this big juicebox event.

Scott Benner 1:23:07
Alright, if there was money? If there was money, I think I would I really do. I, I I'm so stuck between the idea that you can't make something grand without money, that I don't have the money to make something grand and that I would have to charge people to do it. Like there's I'm stuck in that space. I don't know how to push myself beyond that. But maybe one day, I'll figure it out. I don't know.

Barbara Westberg 1:23:32
And now that you've put this out there, I'm sure the answer will come back to

Scott Benner 1:23:39
you. It's possible. I've never said it out loud on here before I don't think. So. There were people sending me plans and breakdowns of how it would go. And I was like, ah, seems like a lot. I'm more comfortable just like, you know, jumping on Zoom and talking to a few 100 people and being done. But you know what I'm saying though, like you I mean, if you've been involved in these things, they start saying like, imagine if 1000 people came and they all paid $300 Like, that's how they start. And you're like, oh, that sounds like $300,000 You know, and you think like, well, that would pay for the event. I could pay speakers and people could make money and you know that that would be good. But then all in the back of my head all it feels like is taken $300 from somebody to tell them to Pre-Bolus and let them have a conversation with other people with diabetes. And that seems wrong to me. So, I don't know. We'll figure it out one day or not. Who knows? The podcast gets big enough. It won't even matter. Just keep doing it like that. Well thank you very much. I appreciate it.

A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G voc glucagon.com. Ford slash juice box. You spell that g v o KEGLUC AG o n.com forward slash juicebox. Don't forget to get yourself a Contour Next One blood glucose meter at contour next one.com forward slash juice box. And of course touched by type one.org is where you'll get those tickets to the upcoming dancing for diabetes show held in Orlando. Beautiful facility, head over and take a look

thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you're not listening in a podcast app, or an audio app like Spotify, Apple podcasts or Amazon music, you should head over to one of those apps right your phone and check it out. It's a great way to listen to a podcast, find the show Juicebox Podcast label and diabetes. Just hit subscribe or follow depending on which app you're in.

#778 Robyn has Rheumatoid Arthritis

Robyn has Rheumatoid arthritis and a child with type 1.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 778 of the Juicebox Podcast.

On today's show, I'll be speaking with Robin, she's the mother of two children, one of them has type one diabetes, but much of our conversation is going to follow the story of Robins. Rheumatoid arthritis. While you're listening, please remember that nothing you hear you. I'm sick by the way, sorry. You hear my voice just as crazy. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan. Or becoming bold with insulin, we'll have to see if my voice makes it through these ads. Before I record the ads, let me remind you that if you're a US citizen who has type one diabetes, or is the caregiver of someone with type one, you can make a big difference by going to T one D exchange.org. Forward slash juicebox. Joining the registry and filling out the survey completely until the end the survey you got to complete the survey. That's all I gotta do. It's pretty easy. It takes fewer than 10 minutes completely HIPAA compliant, it's anonymous, you'd be helping yourself, other people with type one diabetes, and you'd be helping the podcast. As a matter of fact, there'll be a special episode coming up very soon, I'll be speaking with Dave, who has type one diabetes and runs the T one D exchange. And he's going to go over why it's so important to join the registry and take the survey. This episode of The Juicebox Podcast is brought to you by in pen from Medtronic diabetes, please go to in pen today.com to learn more and get started today. The Juicebox Podcast is also sponsored today. By where's my voice? I think I got this RSV that's going around. You know what I mean? Turtle. This episode of The Juicebox Podcast is also sponsored today by us med us med is where Arden gets her Dexcom and Omnipod supplies, and you could get your diabetes supplies from there to go to us med.com forward slash juice box or call 888-721-1514 I just cut out a huge coughing fit. So there's no way I make it through the ads in the middle of the show.

Robyn 2:20
My name is Robin. I am the mother of two girls Imogen is seven and Aly is four and she's my type one.

Scott Benner 2:31
Sorry, Robin. So your voice broke while you're telling me

Robyn 2:33
I know I cracked and then I had to cough Wait, let me get a sip of tea.

Scott Benner 2:37
And I'll try Thank you sympathy. We're gonna keep going though we're not stopping. I'm just saying that. This happened during you telling me that your two children have two names. I've only heard four times in the whole world.

Robyn 2:47
So I know. I told you they're identifiable. That's fine. I

Scott Benner 2:51
just didn't think we would, we would need to go over it one more time if we want people to know what one kid is named.

Robyn 2:58
So my oldest is Imogen, and we call her me.

Scott Benner 3:02
And how old is she? She's seven. Okay. And second oldest,

Robyn 3:07
my youngest is Aly. And she's four.

Scott Benner 3:12
Okay, seven and four. Does one of them have type one? The four year old does four year old as Ellie does a poor image. And that's the last time she gets talked about.

Robyn 3:23
She has nothing going on in her life or kid.

Scott Benner 3:27
Poor boring kid named image, right? Where do you get the name from?

Robyn 3:32
So my background is Scottish and Irish. And my husband is Scottish and Japanese. So both of the kids have like a Scottish Irish Gaelic first name and a Japanese middle name.

Scott Benner 3:43
Cool. That's lovely. All right. So let's talk about you for a second. Do you have do you have type one diabetes?

Robyn 3:51
I do not have type one diabetes. Okay.

Scott Benner 3:53
Do you have any other autoimmune issues?

Robyn 3:56
I do have other autoimmune issues. I have. I know. I'm going to spoil it.

Scott Benner 4:02
I want to talk about it immediately. Yes.

Robyn 4:05
Sure. Okay, so I have rheumatoid arthritis. Okay.

Scott Benner 4:08
Now, here are my basic questions that I believe are everyone's basic questions. Sure. Why do we all mispronounced that word?

Robyn 4:16
Because it's got so many weird letters in there. Okay. So it's not that I should talk so Aly Aly spelled E I L I D H show I so I shouldn't be able to say rheumatoid rheumatoid arthritis. And that that is a tongue twister.

Scott Benner 4:30
That is the correct pronunciation right. Rheumatoid? Yes. Right. So room like room. toyed like Altoid. Yep. And what most people say rheumatory.

Robyn 4:43
I just stumble over it. Yeah.

Scott Benner 4:46
I always say it incorrectly. Anytime. How do you say it? I think I say rheumatory. I think I think I grew up around people who were adults who did not care if the words they were saying were particularly correct. And they would just stick with them. Oh, So I, for instance, the entire time I was being brought up in the world, I thought the woman on TV who talked to people in the after names name was Oprah. Because that's my mom said it. And this one's not as much fun as it used to be. But Bill Cosby lot of stuff like that where I will. Yeah, so I think people just like or here's what's the other one. Alzheimer's. I know people who call it old timers, and they're not kidding.

Robyn 5:35
Really? Yeah. Oh. All right.

Scott Benner 5:40
High School first kids. Alright. Alright, so when were you diagnosed with rheumatoid arthritis.

Robyn 5:50
So I started getting symptoms in June of 2020. Funding and the pandemic and kind of went back and forth with my doctor for a while and then I saw rheumatologist in September of 2020, and was officially diagnosed November of 2020. So like a year and a half, not that long.

Scott Benner 6:09
Okay. How old are you when you first noticed that?

Robyn 6:13
Oh, there t 3939. Okay, and you're about 40. I was big math 40 Minus one.

Scott Benner 6:22
Trust me. I had no idea. Of course, I didn't know when you were born. So I was at a disadvantage, but okay, so around 39 years old. At that point, do you turn to everyone in your extended family and go, Hey, is this happening to anybody else?

Robyn 6:37
I did, and we kind of have that look out when Haley was diagnosed. Did anyone have autoimmune anything that way? I wonder now if my mom didn't She definitely had something going on. But was never diagnosed. My brother has something I assume it's autoimmune, but he doesn't have a diagnosis yet. Okay, so, but no other ra but as soon as I had symptoms, my immediate thought was autoimmune just because of Aly, and then type one.

Scott Benner 7:04
So just very quickly, your mom had things going on, like what kinds of things?

Robyn 7:09
Um, she was really sore? A lot. Her ankles would always be aching. She isn't like going to doctors. She was a nurse, so she didn't ever like going to see the doctor. She was very stubborn. So I wonder if that joint issue non joint pain she constantly had could have been something autoimmune.

Scott Benner 7:29
And your brother.

Robyn 7:31
My brother has stomach issues. He he gets clots

Scott Benner 7:38
a lot. Blood clots. Yep. Okay,

Robyn 7:41
so he's had he's been hospitalized quite a few times for that. And just some of his symptoms are similar to mine.

Scott Benner 7:49
That's scary. Well, yeah, no, it's

Robyn 7:51
crazy. Yeah. Do you have kids? Yeah. He has two kids yet.

Scott Benner 7:55
Wow. Okay, well, that was depressing. I don't know. Yeah, sorry. No, no, no, it's so good. I actually, I thought, what do you do that for Scott. We're about to have an upbeat conversation about rheumatoid arthritis. And now you're like, now everyone's thinking about, you know, Robbins brothers walking around constantly saying goodbye to everybody. You know, like, he must

Robyn 8:16
be. I don't like I'm so thankful I have a diagnosis, because I can't imagine those like few months, between June and whatever. November was so crazy, right? And you just wonder, like, what could it be? Could it be this, I thought maybe it's celiac, maybe it's this, maybe it's that maybe right? You go through the whole litany. Right? And he's had this for years, and no answer. And if you don't have an answer, how do you treat

Scott Benner 8:41
it? He's never gotten like a full blood workup or anything like that. He

Robyn 8:45
has had every test known to man. Now the interesting thing about Ra is my bloodwork is clean. My bloodwork does not show any antibodies for RA. And about 30% of people that are diagnosed with RA were called seronegative. So it doesn't show up in our blood at all.

Scott Benner 9:03
Okay, 30%. Great. Alright. So prior to you having enough of a problem, back in 2020, we're used like were you said, I said, were used like, where you were thinking, Oh, my God, I brushed over and now I can't speak where you thought I'm going to a doctor prior to that, looking back. Anything happening? Or did it just come on like a light switch?

Robyn 9:30
There was probably stuff going on. I've always had stomach issues. And it's not directly linked to ra, but I wonder if there's a link there somewhere. I used to be a competitive gymnast like way, way back in the day. So I just always assumed all my aches and pains were just because I beat my body up for so long. But it was really in June. It started with my legs and I was like Oh, I'm not walking around as much we're in isolation here. Everything shut down. I must not be moving. My legs are getting stiff. So I tried going for a couple of walks and, and doing everything that way and it just wouldn't shake, couldn't get rid of it.

Scott Benner 10:08
So talk about that first stiffness, pain, soreness.

Robyn 10:14
Yeah, pain, but like this weird, achy sensation that I've never really been able to put into words, and it's mostly in my knees and then it went to my ankles. But I remember my doctor recommended I take a leave. And that would, it took the pain away, but not that weird sensation. Okay, what's like, I was always aware of my legs.

Scott Benner 10:41
You and I don't know each other. If I said to you, my bones hurt. Is that an accurate depiction? Or? No?

Robyn 10:48
That's accurate. Now? I don't think at the beginning because I wasn't even sure if it was my joints. Okay, so now I'm confident it's my joints. Somebody definitely ache more

Scott Benner 11:03
stomach pain you said to?

Robyn 11:05
Um, yeah, just kind of stomach issues, bloating and all that. General stuff. Flu and most people have now yeah.

Scott Benner 11:13
All right. So that's stuff going on for years prior? Or?

Robyn 11:17
Yeah, yeah, I was diagnosed, I had a parasite, like 10 years ago. And I got that taken care of, and the antibiotics I was on for that, like, killed my gut completely. And then I had a lot of food sensitivity issues and stuff. So I've worked through that.

Scott Benner 11:34
How do you work through that?

Robyn 11:37
Um, it did like an elimination diet, which was awful. Lost a lot of weight. Super tiny for my wedding. That was cool. couldn't eat any any food at my wedding, but that's okay. And then I was just suddenly kind of able to introduce foods back in and got back to a better place where I wasn't running to the bathroom. All the time?

Scott Benner 11:59
No, you didn't use any kind of supplements or stuff like that to help you rebalance your stomach?

Robyn 12:06
No, just probiotics.

Scott Benner 12:08
Probiotics. Okay, we'll call them supplements. Like, like over the counter or like a handful of like, like, military grade ones the doctor pointed you to

Robyn 12:20
no over the counter because the doctor pointed me to nothing. Gotcha.

Scott Benner 12:23
Big help us doctors. All right. So now we've got stomach issues. sore legs. Anything else? Wrists her neck always stiff?

Robyn 12:37
Yeah, I've had issues on my back for years lower back.

Scott Benner 12:42
Worse around your period? Not necessarily.

Robyn 12:47
I'm not necessarily with my back. I get it in like my lower hips. They get worse. When I'm on my period. For sure. When I'm that kind of started after Imogen was born. What helps pressure? Anything? Yes, sitting standing is awful.

Scott Benner 13:05
What about people like, give her lay on the floor and have people push on you or stand on yours or anything weird like that? That's that?

Robyn 13:14
Yes. Huge. I've that's what I found like, especially with my legs at the beginning, when I'd sit on the couch and my legs up, because when they're down, they really hurt. So I put them up high and then my kids would jump on them. And if the pressure felt really good, so I got them to sit on my legs.

Scott Benner 13:31
Do you like rubbing or squeezing or pressure? That would be fun, wholly unnatural to other people? Yes. And it feels good. For sure.

Robyn 13:40
Sometimes it's sometimes it's terrible. And sometimes it's really good. And then since my legs, it's gone into my elbows and my wrists and my fingers as well.

Scott Benner 13:50
How do you alleviate the pain in your wrists?

Robyn 13:55
I have compression gloves that I wear which are mostly for my fingers. But I finally help my wrist as well. Or I rest I find it's weird to Okay, so some joints crave heat. So my knees love heat. I have a heated blanket heating pad with me all the time. And some joints crave ice. So my wrists sometimes like heat sometimes like ice, knees heat ankles ice.

Scott Benner 14:22
Do you have any heat or cold sensitivities overall in your body? Are you always hot always cold?

Robyn 14:27
Yes, usually cold and my fingers now. Like if I'm outside in the snow like they get really like painful cold if they're under cold water tap my finger like it hurts. The cold water. I did have when I was little oh my gosh, I forgot what it's called rain rain nerds. I think where your digits go like white you lose circulation and toes or fingers. You had that had that in my toes and I haven't had it since I was a kid.

Scott Benner 14:57
Toes ever go tingling, numb Nope, no fingers. No like, okay, no. Toes ever change color like super red? No, no. All right. Hold on a second. You haven't found yet. Tons. So how do you get a diagnosis if your bloodwork comes back clean?

Robyn 15:25
So first appointment I had with a rheumatologist was supposed to be in person, but we did a tele appointment because he was homesick. And he went through this like massive list of questions, but one of them was auto immune to the family. So I think that tripped it in his head that it could be autoimmune. So he sent me for bloodwork. And he sent me for an ultrasound. So I had an ultrasound done on my ankles, my knees, my elbows, my wrists and my fingers. And based on those results, and he did an examination and my joints are so swollen that he can feel the inflammation in them. And then my synovial fluid, which is the fluid around your joints is inflamed in all of those joints that they ultrasound. So that's where my diagnosis

Scott Benner 16:10
came from, from an ultrasound of your joints. Yeah,

Robyn 16:14
sometimes they'll do a CT or an MRI. But I guess the ultrasound was enough in my case

Scott Benner 16:18
to look for the swelling and the inflammation. Okay. Once that happens, yeah. Did they medicate you with anything?

Robyn 16:28
Huh? Yeah. So much medication. Yep. So I am on immunosuppressant medication now, because my immune system is definitely out of whack. Unfortunately, I haven't found a drug combination that works yet to reduce the inflammation and take away the pain. But let me see I wrote them all down for 12345. I'm on my sixth medication now. So they, each one takes about four months to work. So you start this process, you start a new drug, you go through the drug company and your insurance to get it covered or not covered. And you get set up and then you start it and then you're in this waiting period to see if it's going to work. And then four months later, you're like, Okay, it's not working and you try something else.

Scott Benner 17:16
Well, so what was the first one

Robyn 17:19
sulfasalazine didn't work. Didn't work? No. any impact at all. Um, so before I was diagnosed, because also with the pain is you get like brain fog, awful, awful brain fog, and just pure exhaustion. I'd be in a like a virtual meeting at work. And it's like, my power button got turned off. And my colleagues could see it before I felt it. And they're like, No, you're done. And I would just like literally power down. And I couldn't I needed to rest. I needed to just recharge my batteries for a bit. So I think the sulfasalazine helped with that a little bit. I was able to I guess not stay awake. I wasn't falling asleep, but my energy level was up, but not enough to stay on it.

Scott Benner 18:05
Do you have a thyroid thing?

Robyn 18:07
So I've wondered about that. My level, what's my level? I think it's two. So

Scott Benner 18:13
you're good. Okay, I'm good. All right. Okay, next drug?

Robyn 18:19
hydroxy, Clora hydroxychloroquine.

Scott Benner 18:20
That didn't help. Nope. Didn't it cure river blindness. It couldn't help you.

Robyn 18:26
It wasn't going to cure COVID. At some point, too.

Scott Benner 18:28
It does everything. So right now, actually, it's an incredibly well used drug across the Yes, yeah.

Robyn 18:37
Oh, for sure. For sure. And a lot of people get a lot of good success with that one. And with methotrexate, which was I think I was on them together for a while. Those are the two like best drugs for RA. They didn't work. methotrexate, actually, you know what I like? methotrexate was definitely working. But it was an injection, which was fine. But it made me really sick. So I'd inject Friday night, Saturday and Sunday. Were like the worst hangover you've ever had. Monday, I'd be in the bathroom all day. And then Tuesday, Wednesday, Thursday, I was kind of okay. And then it was shot day again Friday.

Scott Benner 19:14
Yeah, it doesn't seem. No, no,

Robyn 19:17
no, no. So I'm like, are those three days worth it to be like? No, because I couldn't I couldn't feed the kids. I couldn't play with them. I couldn't do it couldn't work. Like those days were so terrible. I was just trying not to throw up the whole time.

Scott Benner 19:30
Right? Wow. But the three days not that you would just do it anyway. But the three days were like normal or just better.

Robyn 19:38
Better for sure. Okay, I didn't stay on it long enough. Because kind of built they all build up in your system. And I don't think I ever got to a point where it could have taken my pain away completely, but I didn't let it get to that point.

Scott Benner 19:51
Did the doctor indicate that the illness part of it would end at some point or No?

Robyn 19:55
No. Okay, no. So some people are okay. Some people get better with it, but But usually if you're if you don't react well to it, you're going to continue and I was like scouring the internet. Dr. Google was my friend. I'm in a bunch of support groups too. And people were saying, Okay, try and grab all. There's like a cough medicine that you can take that counteracts something in the methotrexate that makes you feel terrible. So I was taking that take folic acid with it. Like I'm trying to do everything I could to, to counter the terrible feelings, but I couldn't. I couldn't get it to work.

Scott Benner 20:28
What was the next drug? You tried? Lucena? mide anything? No, no. How about after that? Xeljanz Oh, I know that one. That's not I was hopeful for Xeljanz I wasn't when I was on previous to what I'm on now. And I was hopeful for a while but no. Objection. Right. That one. That one was pelts pills. Okay. Yeah, I'm hopeful. What, what what made you hopeful about it? And then why did the hope go away?

Robyn 20:58
Um, I just kind of comes in waves, the pain and exhaustion so you'll and definitely tied to my period too. So you'd have days where like, Oh, I'm feeling a little bit better. Like this is it? It's working? Oh, my gosh. And then you have a week where it's like, terrible. You feel awful. Your pain is there. You're in a fog. You're like, okay, no, cool, not working. And then I I don't even say anything. When I go into the doctor's office. He literally just feels my joints. And he's like, no inflammation still there. We're moving on.

Scott Benner 21:28
And then the last drug was the is the one you're on now.

Robyn 21:31
Yeah, so it's called brens. us it's the biosimilar to Enbrel which is a biologic.

Scott Benner 21:39
Everything's better. No, sorry.

Robyn 21:44
I'm in that like a waiting period right now. I think I just took my ninth injection. So I'm nine weeks into it. I did I was I was like, Okay, I went for a period. I didn't use my heat blanket. I hadn't put my compression gloves on. I even said out loud. Oh my gosh, it might be working. I'm feeling better. And then I had the worst week since I've been diagnosed, so but there's so many factors that come into it as well. My daughter doesn't have a nurse at school, so I have to go do her insulin. Normally my phenomenal father in law does it everyday for me, but they're on vacation. So last week, I was in the school twice a day every day. And I think just being on my feet for that amount of time was enough to flare my symptoms up.

Scott Benner 22:31
Well. Let's talk about your period for a minute.

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Sure, it'll be fun topic.

Do you get what you would call a normal period? Or is it abnormal?

Robyn 26:50
I call it abnormal. Ever since my kids were born, it's really heavy.

Scott Benner 26:57
Okay, does it lag abnormally long? Or does the length about what you would expect?

Robyn 27:02
No length is about what I expect. But it comes on so heavy and so strong.

Scott Benner 27:09
Okay, do you ever get like is your iron ore ferritin level dropping because of

Robyn 27:14
that? I don't think so. I'm trying to think of like when? I don't know, to be honest. I would want I'm not sure if they even tests that.

Scott Benner 27:25
Yeah, I would want you to check when you're doing your bloodwork next time.

Robyn 27:29
Yeah, I should look and see if that's one of the things I every 10 weeks, I get my bloodwork done, and they do a whole whack load of stuff. But I've never looked to see if that's there. Yeah, just made me think you that happened with Arden.

Scott Benner 27:39
Right? Yeah. Do the iron. Trust me, by the way, as I'm talking to you. All of my questions are coming from what I know because of Arden. So if it wasn't for Arden, this conversation would be you talking a lot and telling me things and me going oh my god. Wow. That's crazy. It's so but none of this seems crazy to me. So sad. Yeah. And Arden has been through all of those. The blood work and everything and no, it's not alright, blah, blah, blah. But everything you've described, down to the brain fog and the exhaustion, and the cold sensitivity and everything else this is this is how hard it is.

Robyn 28:16
Like, yeah, it makes me wonder too if because, right, they all come together and then cluster if there's ra but maybe there's something else too.

Scott Benner 28:24
Yeah. And you can't figure it out. It's hard to pick them apart to see because Arden Arden has literally had every blood test known demand from like different, like from a rheumatology standpoint. And from an endocrine standpoint, everyone has taken Arden's blood. And I mean the last time we did it for rheumatology, which wasn't too long ago. The phlebotomist Yep, couldn't carry all the tubes in one tray. Oh my gosh, that she needed to take out of Arden. And the blood work came back and the doctor is like everything looks good.

Robyn 28:58
That's so frustrating. It is like, because I check it online. I get it done. And my results are usually online like hours later. And I always look and I'm like, How

Scott Benner 29:06
is there nothing. You want something to be wrong?

Robyn 29:09
You do because you want an answer. You have an answer. You can get a plan and you can move forward. Like when I found when I got diagnosed, I went into the rheumatologist office and I My biggest fear that he would say, I don't know what it is. Yeah. And then my second biggest fear was that it was going to be Ra. Yeah, no, I know. I think actually, I was I was afraid it was going to be like fibromyalgia only because there's a lack of understanding of fibromyalgia everywhere. And I didn't want to always be explaining myself as to what it was and what it meant. Now I'm doing that with RA anyway. But that's my one frustration like the two autoimmune diseases we have. Because people hear arthritis and they think oh, no, I know arthritis. I've got it in my knee or I've got this or my aunt had it. And it's so similar to when people hear diabetes and they know type two diabetes. So I'm like no, like It's not that it's all like it's systemic. My heart's involved, right, I have a higher risk of cancer. There's so many other things involved in it. It's not just a pain in a joint, it's everywhere. And then I find I'm doing the same thing with type one diabetes to like, Guys, come on. Can I have like a clear, easy autoimmune that people just know, when they hear it?

Scott Benner 30:18
Right? Can I get a good one like diabetes, please? Well, that's yeah, that really is part of the conversation here is that you don't, there are other autoimmune issues that are just far more devastating than type one, which is kind of crazy to say, but but can really be true. Okay, let me focus myself for a second. Okay, okay. Have you ever had a day that turns into three days turns into a week where you're like, I'm okay. And then suddenly, it's back again? Or is it always a constant, at least den of pain? And then it gets worse and worse?

Robyn 31:00
It's always a constant and, okay.

Scott Benner 31:04
How do you maintain any kind of lifestyle while that's happening?

Robyn 31:09
It's really, really tough. And that's where I'm struggling right now. So I'm very thankful that I can work from home right now. Because that has given me my life back when I was diagnosed, I was half in in the office and half at home. And just going in walking on floors, like Office floors, or the floors on a mall, like they're really hard. I guess it's concrete. Right? Makes sense. But the floors in my house don't seem to be there seems to be more padding in it. So just walking around in a building flares me up huge. So if I go into the lab, and I'm working, I come home and it takes me like a week to recover. I'm just so exhausted. And so whatever. Same thing, if I'm going hiking, or if I go to the mall, or do whatever, like I only have so much energy, and I have to decide where I'm going to spend it. So it's it's tough. I'm in the zone right now, where, right now my priority is, my kids, they're young, I need to take care of them. So working from home gives me the ability to still be productive and, and good at my job. But also, I can make dinner for them. I can make sure I'm aware to catch alarms for Aly. I can play with them, I can still be a mom, maybe not to the same extent I do a lot of games where I'm sitting down with my feet up, they like to play salon a lot, which is the greatest thing ever because they give me massages. But it's it's been a huge, huge adjustment, and I'm trying to learn how to set boundaries and know when I can and can't do something. But it's tough. I was an athlete.

Scott Benner 32:54
And then yeah, and now I how Gaelic is your background, by the way.

Robyn 33:00
Not very know. Okay, no, I want to know where I live. I don't even know where I live.

Scott Benner 33:06
I don't know where you live.

Robyn 33:07
I live in Canada. Very Gaelic. No, I'm just kidding. So I yeah, my, like my, I don't even know where it came from. It's pretty far back. To go back to Scotland and Ireland. Okay. All right. My mom was born in Canada.

Scott Benner 33:24
Gotcha. But but her lineage comes from that way. Yep. Okay. Yeah.

Robyn 33:30
My dad is is British. He grew up in England.

Scott Benner 33:32
I'm telling you Irish English, autoimmune. hotbed.

Robyn 33:37
Right. I know. Yeah. I felt the one of the hardest things when I was diagnosed, because there had been no other autoimmune syndromes in the family when he was diagnosed, and then when I got diagnosed, I had that initial grieving session of like, it's my side of the family. I not that I did this, but it's my bloodline. Yeah. Which is stupid and illogical. But I had the feelings.

Scott Benner 34:01
No, my wife feels that way too. So she's me. Okay, so how does this impact your relationship with your husband?

Robyn 34:15
Um, negatively affects it, but also positively affects it, if that makes sense. He obviously has to do more. He's a great, great husband, great father to begin with. But there's things I just can't do. So he's learned he can read my face. He reads me. He knows me better than I know myself. So he can step in when I really need it. But I'm terrible at asking for help. So I won't, I'll push myself because I feel like I should still be able to help cook and clean and do all those things. So I know what's more on him, which is hard and he's got a stressful career as well. So that is tough. But we're connected more like he, we, we have great conversations about our fears, and what does the future hold, and we don't know what this looks like, and he's so supportive, and so amazing. And he'll just see that I'm hurting and rub my feet or rub my legs and we have a connection that way, which is stronger. So yeah, but I mean, I don't I don't know what my future holds, right? Like, I don't know, am I going to go into remission and be okay, or am I going to continue to get worse? Am I gonna not be able to walk up the stairs in my house? Am I gonna have to go on disability? Is he going to have to care for me? More? And that's a terrifying thought.

Scott Benner 35:45
What's the the prevailing? I guess, thought around that when you pick around online and watch what happens to some people go into remission? Does it just disappear? Is it Yeah, yeah.

Robyn 35:58
doesn't disappear, but they go remission is the goal. You find the right drug combination. It can work for years where you kind of get your life back. And then sometimes the drug will stop working and then you find another drug. And a lot of people have success that way. My rheumatologist actually has ra himself. And he's had phenomenal success with methotrexate. So we were kind of commiserating in our last appointment, because it's getting depressing. Like, this is a lot of drugs that haven't worked. And there's only so many drugs I can try. So I was so he was kind of being sympathetic, and like, how did you go through this to like, whatever. And he's like, yeah, no second drug worked for me. Like he is son of a. Okay, I'm happy for him. But at the same time, I wish that had been me. So definitely, there are people that do well, and then there's another set of people that don't respond well to drugs. And I don't know if you like, the first thing that came to my head and rheumatoid arthritis is the deformed hands that people can get. So that's a fear,

Scott Benner 37:01
like lumps and bumps that joint

Robyn 37:02
Yeah, and the fingers kind of go out. Sideways, they shift.

Scott Benner 37:08
Just does the weed help Robin?

Robyn 37:11
Um, I haven't gotten there yet.

Scott Benner 37:14
It seems obvious to me, Robin. And I've never listened. I've said it before. I'll say it again. I've never even tried it. And if I'm you, I'd be growing in my backyard. So

Robyn 37:26
I know. I've tried cream CBD oils and stuff. I didn't get like, the, it wasn't like, Oh, this is amazing. I need to do this forever. But I do know a ton of people get success for it. My concern is that Haley's so young still. And if she goes low in the night, and I'm so dreamy and sleepy and relaxed, that I'm not hearing her alarms. That's a concern. I hear so that's holding me back right now.

Scott Benner 37:58
May I say? I wouldn't let that hold me back. If I was you. I would just do it during the day I would try because can you imagine if you're doing all this stuff, but that one thing because CBD May I don't know anything about anything. So I don't want anybody getting mad at me. But CBD creams and oils and CBD and your drinks that all just seems like marketing to me. Like I just feel like I just feel like the weed industry about three years ago paid a bunch of influencers to say that CBD cream made their hands feel nice. I honestly feel like that's what happened. Because you don't hear about it anymore. It was like there was this I do I

Robyn 38:33
have I have some friends that use it for similar things. And they were

Scott Benner 38:37
hippies, Robin. No, no, actually like science people. If it works, it works. That's amazing. But I'm talking about like, really getting that THC in there and letting it do its thing. Like even if it just made you like less aware of a pain. Wouldn't that be better? I mean, not like, I don't want you like Tommy Chang, but that was an old reference. I didn't even go to Snoop Dogg. I skipped I skipped I skipped right over to where like when they made the movies they didn't even like retake the scene if they spoke so I'm not talking about like gone and staring I'm just talking about like a low level of pleasantness like right the steward Hi, like that kind of ever see? Or when you know she's high and she's being interviewed. You're like that lady's a little stone.

Robyn 39:29
I I really should.

Scott Benner 39:33
You really should. I mean, I don't I've never in my life said to somebody like you know what you should do? You should definitely use drugs, but you definitely should. Right?

Robyn 39:41
I've always been like that I'm not rule follower person, right? Like i i Yeah.

Scott Benner 39:48
What if the rule was that this is what people in your situation did?

Robyn 39:51
Right? It's legal up here like there's no issues so I really need to there's like seven weed shops in my town

Scott Benner 39:59
of All the things candidate got right. And all the things kind of got wrong. It's astonishing that they got weed right and have gotten so many other things and right. Am I wrong? I'm not wrong. No, no. Okay. I pay attention. I know what's going on in the world a little bit. Alright, so, so let's leave that there. But let's just say, I mean, it seems obvious. Because what if it brought you some sort of like, like, pleasure or happiness? Or, you know, what have you? I mean, what if you woke up tomorrow and you're like, Oh, my God, I'm taking seven drugs. And you mean, like, you know, strawberry dream is what I should have been smoking and it all would have been okay. Like, you don't? I mean,

Robyn 40:42
why do you feel like relaxes me so much? And then I can't do my job. And then I'm like, This is so great. I can't go back to not doing it.

Scott Benner 40:49
So can we talk for a second? Like, for real? Like, we're friends? Yeah. Yeah. I think that's better than what you have now. Like, if you had to retire, don't you think if you said to your husband, look, I know this is crazy, but I gotta become a, I gotta be a weed smoker. And if I do, I won't be in pain anymore. But I'm going to need you to work a little more, because I can't work anymore. The job I have now. You don't think he'd be like, that's fine.

Robyn 41:14
He would he would do anything. Yeah. To support me whatever it needed to be. I know. But then I feel like I don't know. I don't like putting things on to people. And then I feel like I'm not. Now stop

Scott Benner 41:23
it. Robbing this guy. Put No, I got issues. Yeah, I mean, this. Are you Catholic? No, no, you don't even have that pressure. Okay. And you still feel this way? Yeah. All right. No, no, Robin, listen, I think that anything you could do to make this go, this is a big thing. This isn't like, this isn't like you twisted your ankle and you're a pain to people for 10 days. No, you know what I mean? This is a big deal. You should cut yourself a break. Why You Should Why are you trying to be so tough at this? Seriously? I don't know. I don't know why. But what do you what's going on? Like, you feel like if you give up it's going to like spiral.

Robyn 42:05
Maybe like i i I like being there to support my family. I've always been able to stand on my own feet. And I've achieved a lot of good things in my life. And I'm proud of them. And the thought of not doing them anymore and not being there anymore is I don't know it's scary.

Scott Benner 42:24
So I'm going to now do something which is incredibly odd, because I have no context for this personally, right. But I'm going to make the weed argument for you. Seth Rogen seems pretty successful. Right. And he's Canadian. Isn't he Canadian? Pretty sure. All right. Okay. I saw your talk was just at the Super Bowl. I saw Snoop Dogg singing at the Super Bowl. He looked okay. Joe Rogan has the biggest podcast in the world. He's high half the time. I think you could do it. You know what I mean? Like I don't even I don't even see why it would impact your your career, to be perfectly honest with you. Like, I think you have this, like vision in your head of like you in a room with a lava lamp and a beanbag chair. You can't stand up. Is that what you're thinking right now? No. Fabulous. I mean, just for a couple. But I just think you'd like how does the we'll be doing? That was Whoopi Goldberg for people who don't know my my shorthand. I think she's a pen smoker. Right? She walks around with a weed pen.

Robyn 43:34
Yes, yeah. I don't even know anything. I

Scott Benner 43:37
don't either. I'm just going by what I figured out so far. leading the blind. I know. We're the worst. This is this is the worst Cheech and Chong movie ever.

Robyn 43:45
There are so many people laughing at us right now.

Scott Benner 43:47
Well, that's because they're high.

Robyn 43:51
Maybe we're highly entertaining.

Scott Benner 43:53
I know I am. I get a review about it recently. So I'm now googling Whoopi Goldberg weed pen. Yeah. Whoopi Goldberg touts vape pen in her column about marijuana. How Whoopi Goldberg fell in love with her vape pen.

Robyn 44:12
All right, I promise that I will definitely look into it. Yeah, maybe I'll actually go and talk to someone at one of these stores.

Scott Benner 44:18
Well listen, the guy you're gonna talk to is not going to fill your full confidence but just remember this he knows a lot about or she when you get there, right? Yeah, I don't you're like I just think that if I was in your situation, I don't see the end of what I would try. Like I know I wouldn't want to be chaotic and not be able to like function like that. Wouldn't have you tried narcotics for this? No, no. Yeah, that seems like a bridge too far for me that way. Are you all right? It does anything. Anything like hippie help, like certain drink or food are avoiding a certain food? Is there anything in there that's valuable?

Robyn 45:03
I haven't found anything. There's some people in the community that swear by certain diets that will help them. I've tried to kind of like cut back on sugar, some sugar is never good for you. There's some like anti inflammatory foods that I'm trying to introduce more into my diet like avocados and whatnot, but I haven't gone full fledged into, into that

Scott Benner 45:30
wouldn't be something methotrexate didn't work. But avocados were the

Robyn 45:34
avocado. I know. Right? Like, it's kind of I can see it definitely helping. It can help the symptoms, right, but it's not going to help the overall damage that's happening to my body. So I still need the drugs, whatever helps my symptoms, the drugs are still going to have to be a part of my life. And I'm really hopeful that I can find one that works.

Scott Benner 45:52
Do computer screens give you headaches?

Robyn 45:56
I'm not really. Okay. No,

Scott Benner 45:59
no, I'm just saying things that happened to Arden to see if there's any.

Robyn 46:02
Any other correlation there. Yeah,

Scott Benner 46:03
you're I have trouble sleeping.

Robyn 46:07
I have trouble falling asleep right now because I hurt.

Scott Benner 46:10
But once you're sleeping, you can stay asleep forever.

Robyn 46:14
I could. Well, I have little kids, so I feel like I could sleep forever.

Scott Benner 46:22
So aren't I

Robyn 46:23
yeah, I don't have trouble. No, I don't wake up and like, Yeah, can't get back to sleep.

Scott Benner 46:27
Here's Arden's thing. If she needs to be somewhere, she'll set an alarm and she'll get out. But if she doesn't need to be somewhere, she could sleep the entire day away.

Robyn 46:37
Could you do that? I would like to try that.

Scott Benner 46:41
Okay, but she doesn't wake up feeling any better than when she went to sleep?

Robyn 46:44
No, like sleep is not restorative. Right. Like I wake up and I'm like, I could go back to sleep right now or have a nap or do whatever. I never feel rested.

Scott Benner 46:56
Here's a scary question. Have you ever thought that you might get type one diabetes one day? Yeah. 100% I would too. If I was you. I would just be like, every day I woke up and I'd be like, This gotta be the day something's gonna happen.

Robyn 47:07
Well, I wonder sometimes, right? And I'm like, Oh, what do I feel like this? Because like, maybe my sugar is high or something's off that way. Or whatever. I did do trial net. I don't have any of the markers. Oh, that's

Scott Benner 47:18
good news.

Robyn 47:19
Neither none of us do. Oh, this was before. I was already diagnosed. I

Scott Benner 47:23
was gonna say Robin in fairness. You don't have the markers for our AI Josh, why would you say? Because it seems obvious. We've been talking for 45 minutes. Your life this show? This is definitely good.

Robyn 47:38
But I feel like at least, at least with type one. Now this sounds terrible. Because I don't feel it for my daughter, but at least with a type one. I know what to do. Yeah. Right. Like I know the insulin is gonna work. It may take me a while to find the right insulin for me. But I know that there's a process. I like process. I'm a scientist. I like flow like that. So I think what's really bothering me with the RA is I can't find triggers. I can't find what makes me feel good. What makes me feel bad. There's no predictability to it. One day I wake up, and I'm like yesterday, I'm like, I'm going to organize my drawers. Oh, cool. Where the hell did I get that energy from? And then today I wake up and it's like, I feel like sludge.

Scott Benner 48:23
So it's hard for you to talk to me today even

Robyn 48:26
know I'm okay talking to you. But my knees are really sore right now. So I'll probably spend an afternoon working from my couch.

Scott Benner 48:33
Do you find yourself rubbing them when? Even almost unknowingly sometimes? Absolutely. Do you ever sit four inches away from an electric space heater?

Robyn 48:43
I don't have an electric space heater.

Scott Benner 48:46
Well, let's get on Amazon and get you one of those two. But I use like I said with my heating pad like get weighted blankets. These things help.

Robyn 48:53
Yeah, we did like it. I don't like even sometimes like our regular blanket. feels heavy on me. And it hurts. So I don't like that. I felt like weird things. Compression gloves. I really like for my fingers. My hands but I stopped wearing tights. Now girls always wear tights. I found that compression on my legs too much. You didn't like that. So now I'm wearing looser. tracky pants kind of very stylish.

Scott Benner 49:19
Let me just say as a straight man. When you girls all move to tights, is like the best thing that ever happened. I don't know. Like I know it's wrong to say 2022 and everything but really it's wonderful. Like it used to be girls used to wear like when I was growing up like boxy straight leg blue jeans and like it was yeah, like this was a great thing. I'm

Robyn 49:41
tights were phenomenal. I love tights, and they're so comfortable. And you can wear them with anything like, I think a benefit for us to

Scott Benner 49:49
know I was gonna say there seems to be a ton of great reasons for you to do it. But I'm just saying. I'm just I'm a big fan. That's all Thank you.

Robyn 49:56
I know I can't do it now.

Scott Benner 49:58
Well last Jesus right I

Robyn 50:01
know I need to find a solution there just so I can get back on my tight

Scott Benner 50:05
sides because such a lifestyle and fashionable and you don't I mean

Robyn 50:10
you can dress it up you can dress it down when you can throw them under a skirt and look super cute. Yep.

Scott Benner 50:16
I've been reading about medical marijuana and rheumatoid arthritis while you've been talking. The cannabinoid compounds THC and CBD found in marijuana have proven medical properties among these are pain relief. certain strains of marijuana can target pain and bring much for you. This is actually on a page about Ra. Multiple cannabis, cannabinoids, cannabinoids, Jesus can't just say weed, weed. No because it's not it's different. Well, what the hell's a cannabinoid? Alright, hold on a second Robin. Any group is closely related compounds which include cannabinol, and the active constituents of cannabis. That's unnecessary work to reduce inflammation. So CBD n th, C, as well as CBC CB, d A, CB, G, CB, n, n th ca, chronic pain, see, because a lot of your fatigue can come from the pain too, right? It just drains you. Yeah, you get that kind of like, like malaise and

Robyn 51:23
like when you have the flu, and you don't want to go to the coach. Like yeah, it's really hard to just get up and you ache.

Scott Benner 51:29
Do you have any anxiety or depression around the RA?

Robyn 51:36
Not really, like I have feelings that. Like I don't know how it's gonna go. But I don't it doesn't debilitate me at all. Okay.

Scott Benner 51:47
All right. A little bit more on this than we move on. Okay. So there appears to be appears to be again, you're right. People are laughing at us. But there are there appears to be different ways to take the weed. So yeah, well, the will be the weed. I don't really, I don't know. This is just how it appears to make topicals I think we're not we don't want that. vaporizing. I don't I I'm sure if it's like pure. It's probably okay. Again, I don't know anything about anything. I am thinking back to that one. Time where that the vape pens got the vitamin E in it or something like that. And then cause that like vaping lung for people? Oh, yeah. Right. We don't want that. edibles apparently, are a bit of a inexact science from what I've heard. But this here says that if you ingest an edible, the effects that you feel tend to last longer. Oh, there's also they says like drops are kind of tinge tinctures. Right, that you can put onto your tongue as a way to ingest it. So if you don't want to smoke, but I don't know, like I envisioned a time where those girls are rubbing your legs and pack in your bank for you. And Mommy's feeling good. And then we we get up and we do some stuff. You know what I mean? Like, because if, if it really does, you were talking earlier about the concern about you know, do malformations in your body from this like, if, if, if you can get ahead of stuff like that. I mean, I would hate to see at some point your life your fingers are moving in the wrong directions and you go like, should have tried smoking weed. Yeah, like because it's such a giveaway. Like if it doesn't work. True, then who cares? Right? You can do anything, you know. That's true. All right. That's a good did you think you were coming on my type one diabetes podcast today to be talking to smoking weed? No. And here we are.

Robyn 53:45
Here we are. Wow.

Scott Benner 53:48
So there's some like really scary stuff about ra Hmm. A bone and cartilage around the joints ligaments, tendons, eyes, blood vessels, lungs, hearts, kidneys, digestive tract, nervous system, it impacts all of that or can

Robyn 54:00
freezing. Yeah, and that's the only thing to smoking is have asthma already. And then I'd be concerned about lungs because it lungs are impacted with

Scott Benner 54:11
we're gonna need gummies that or something like that. Oh, see, there you go. Finally, something fun. Took 51 minutes for us to say something fun. Do you think people are listening right now? And they're just like thinking thank God I don't have this or do you think they're finding it? I think it's enlightening personally, but I hope

Robyn 54:29
it's enlightening. I hope if someone's out there and struggling with similar kinds of symptoms and not getting an answer or getting shot down by their doctor because their blood works fine that they can take something increment. Try to push a bit harder do more research and I don't know I feel very lucky that I got my diagnosis as fast as I did with fine bloodwork.

Scott Benner 54:48
I agree. So I keep wondering about for you if the parasite when you got the parasite and they hit you so hard with the drugs if Yeah, maybe that didn't not help you so much.

Robyn 55:00
Oh, I wonder if everything kind of started there. But then I obviously had like when my toes were going white when I was a kid, like there's obviously some autoimmune stuff going on in me already, but that could have been the trigger. I had a lot of stress leading up to this diagnosis that I wonder too, if that kind of impacted it.

Scott Benner 55:18
The Weed would help with that. What kind of life stress?

Robyn 55:24
Um, yeah, my mom got sick. She passed away.

Scott Benner 55:28
How old was your mom when she passed? Seven, D. Four. Did you ever talk to her about the joint pain? Or Would she not talk about it?

Robyn 55:38
Um, I always tried to get her to go to a doctor because I always had sports injuries. As a kid. I tried to get her to ice. She hated ice. But she was she was she was so stubborn. So I think she did talk to her doctor and stuff about it, but we never talked about it this way. And then she got cancer and passed away. So that was stressful. And I got pregnant and lost a baby. And that was stressful. I'm sorry. On Christmas.

Scott Benner 56:05
So what you got? You lost the baby on Christmas.

Robyn 56:08
Yeah, I started spotting on Christmas for the first the first Christmas after my mom had passed. I was early. I was eight weeks. Yeah, enough for it to be and then I had elite. So huge highlight. And then she was diagnosed when she was eight months old. So I never got down to like that baby phase with her. So I didn't sleep.

Scott Benner 56:32
Oh, yeah. You went right. from baby to baby diabetes? Yeah. Oh, she was eight months when she was diagnosed? Yeah. Was her diagnosis before or after your RA diagnosis?

Robyn 56:43
before? Before? Because she's coming in the summer. She'll be four years.

Scott Benner 56:48
I say diagnosed? Yeah. Okay, so she had type one for a couple of years before this happened to you?

Robyn 56:54
Yep. Wow. So I think all that rain all that world together not sleeping, we know how terrible not sleeping is. And then the pandemic hit. So then you had all the stress of trying to figure that out and and working from home and working from the office and my kids are at home? And how do we do this? And my husband is trying to figure out how to teach kindergarten from home. So there's stress everywhere. And then I think I I started almost sleeping better. With Aly. Like we got to a better point with the type one. And then my body's like, oh, you can handle more now. So fam.

Scott Benner 57:31
She looks like she's got some free time. We should give her 100% Just how it

Robyn 57:36
feels? Yeah. Because you know something's tripped it right. So I wonder if it was the stress?

Scott Benner 57:42
Did it definitely could be. I mean, not that I

Robyn 57:45
need a reason. But it almost feels good to be like, Oh,

Scott Benner 57:49
well, I'm not wrong to say would be nice. If you could point to something about something right? It would be relieving to be able to say anything with any certainty while you're while you're involved in something that you can't find any certainty in. For sure. Yeah. For sure. How far are you into this last medication? This most recent.

Robyn 58:08
I've taken nine nine weeks in so I should be at the point now where it's starting to work. So I'm still hopeful. haven't given up on it. I just got word that my insurance company's gonna cover it, which is exciting. Well, so expensive.

Scott Benner 58:22
If it works, you just take it forever. As take it forever. Yeah. Shot a week.

Robyn 58:27
Shot a week. Yeah. And I, my body doesn't like it either. I get like a site reaction to it. I get it like a almost like a really big hive. Okay? Do it because my, my immune system is not happy. But I'm okay with that. I'll take it, it's not hurting me. So, I will fully take this for the rest of my life means I'm going to be immunocompromised the rest of my life, which in the middle of, you know, pandemic is not awesome. Super

Scott Benner 58:54
exciting. Yeah. Um, so this stuff is, is quelling your immune system to stop it from creating, hopefully to stop it from creating this inflammation.

Robyn 59:05
Yeah, because right now my immune system is attacking my joints. Still,

Scott Benner 59:09
all of those drugs were meant to do that, or some of them don't work that way.

Robyn 59:14
They all work that way. Just in different. They have different methods and ways to get there.

Scott Benner 59:19
Okay. Oh, boy. Sorry. I actually know my next question. And part of me was like, just stop the recording. Oh, I'm sorry. I am really, genuinely thankful that you came on to talk about this series.

Robyn 59:39
Oh, good. I'm glad. And I'm like, I mean, I talk about the sad things that have happened but like, I'm okay. Like, it's part of what goes on. Everyone has stressed and stuff in their life, right. So I don't at all feel bad about talking about it or bringing it up.

Scott Benner 59:56
Let's talk about that for another minute though. Because if you're in

Robyn 1:00:00
Well, now I care. I'm just gonna

Scott Benner 1:00:03
be amazing. If this was the moment you just went too far, 180 degrees, and you were like, That's it. I'm not gonna have a good attitude about this. Anyway, this guy talked me into it, like, I just ruined your life, you know? But how do you do that? How do you maintain a good attitude and a forward motion when this is happening constantly? What else am I going to do? Well, some people would lay over and die.

Robyn 1:00:30
Fair, okay. Um, I don't know why we've gone through hard things in our lives. My husband and I, nothing like super major. I guess all of this is major. And we keep finding a way and I remember when he was diagnosed, and we were in the hospital and hadn't slept. And I was so overwhelmed with everything. And he just looked at me and he's like, we'll find a way. And we'll, we'll get through this the same way. We've gotten through everything else. And he's right. We've gotten through everything so far. So what's to say we're not going to get through this may take a while. But there's hope. There's actually a lot of good things in my life. So

Scott Benner 1:01:21
I cling to those everything isn't this thing.

Robyn 1:01:24
Every you know, it's a it's a massive part of my life, for sure. And impacts me I think about it every day. But like, type one is a big part of everyone's life, and you think about it every day to varying degrees, right, but you can still do so much and like with Ailey, like we've been open to trying all different things, we're looping and all of this stuff so it's like let's try and see what we can do and make the best of what we have and it's a struggle home oh my gosh, a huge struggle and there's days where I don't do much of anything my house is a disaster. I'm trying to be okay with that kind of stuff and focus my energy on the good things I'm still working I'm still functioning I'm still talking with my friends and and you know, being with my husband and I have phenomenal family my dad is and his new wife are so supportive and my in laws live around the corner and they are the greatest in laws you could ever hope for. So there's there's a lot of hope.

Scott Benner 1:02:27
Your dad pimpin is he in his 70s bouncing around picking up ladies

Robyn 1:02:33
bouncing around. Not really just one. Yeah, I've known her my whole life. She's been involved in our family the whole time, which is

Scott Benner 1:02:41
just been waiting for too long.

Robyn 1:02:46
Yeah, she was she was actually my mom's close friend. So they kind of bonded over my mom. But it's like she's been a part of my family the whole time. So it was easy. still tricky. Still my dad getting remarried. Right. But yeah, it was an easy transition. Someone that I've loved my whole life and that has loved me and supports me and my family. So wonderful thing. pimpin

Scott Benner 1:03:11
just I just I have like a 78 year old guy in my head with a big purple hat and a feather and walking around like pointing that ladies and like making the gun signal and winking at them. Oh my gosh, we got her phenomenal. Not how we got her?

Robyn 1:03:25
Probably not no, no. Although, they just went to Antarctica. Really? Last month. Yeah, they went on a trip. I was gonna plan this next trip. Yeah, for him. Ya know, I'm really happy for him. Like, like, he was so dedicated and loving to my mom and took care of her through everything. And I'm so happy to see him smile, and he is loved. And someone's caring for him and looking after him. And, and he's living.

Scott Benner 1:03:55
Yeah, I think your story. And I'm not quite done with you yet. I know. We're up on an hour. But I think your story feels really good to me. There's actually an episode coming out this week where Erica and I, she's the family therapist that comes on sometimes as type one. We start off by talking about burnout. But then we just really talk more about resilience and and, you know, different ways that people sometimes are and aren't. And the way that you can't really figure out why one person has one reaction to something like this and another person or another. Yeah.

Robyn 1:04:33
I'm so so lucky that I have support, right. I have family support. I've got my kids that love me and my husband who is phenomenal. And I've got I found support in the community. Yeah, I found an RA community the same way I found a diabetes community and they are so supportive. I do a virtual like group sessions with them. And I'm having In a bad day, and I sit and talk, and I'm like, Oh, this and I've got to ask for a combination at work and what if they don't, you know, accepted and this and that, and maybe I'm not as sick as I think I am. And then there's always someone there to be like, Oh, you're like, what if it works out? So I'm, they're kind of giving me the positivity. So I think doing this by yourself, anyone going through something by yourself? We can't. We need people to be with us. And it's okay to ask for help and seek that help and seek that. That support.

Scott Benner 1:05:30
I, I just I feel I'm oddly proud of the podcast right now, while you're talking. I just seriously, I'm like I don't, I don't know where else you can talk about stuff like this. And, and let a lot of people hear it at the same time. It just it's so important to in my mind, it's so important to remember that you're not born on day one and promised 78 years get an amen. Not like your dad is. He's lucky. You know. And there are people who, who passed his children in his teens. And I just think of my own life, I think of a girl I knew that I went to high school who died in a motorcycle accident with her boyfriend when we were like 17. And people who I knew as children who were gone before our first reunion, which I didn't go to, but that's not the point. When I was in elementary school, this boy who I was not friends with, like Robin, you listen to the podcast, right? I do. I have no memory to speak up about some things, right? There's this boy, his name was Chuck's aciac There's no reason for me to remember that. I didn't hardly know him. And when we were in fifth grade, he passed out during recess. And before we got to high school, he was gone. Well, and I don't know why. Like, I don't remember anymore. Why? I just know that these like small experiences have just taught me that. We all pretend that this thing is supposed to be perfect, right? We're all supposed to come out be about six feet tall, super handsome, really big penis, right? Like bunch of money. We're supposed to bounce around with, you know, a model who also loves us and as a great mom in our Lamborghini, going from the winter house to the summer house skiing in between. And then we die very comfortably at 96 years old big penis still erect? Like that's right, right? Impressive. But everybody thinks life's gonna go great. And it's true. The truth is life's gonna go like life, which more often than not, is more like the conversations that we have here. Yep. You know, and I think there's something about expectation that yes, that creates the, the attitude that you have are the one that I expels, or the one that I think I've instilled in my daughter even which is, I mean, I don't like I don't want to oversimplify it. But I think there was a song of the 70s already, like no one ever promised you a rose garden. I think that's like a country song from the 70s. I don't really know. I remember it being on an eight track tape and my dad's car, which is a lot of words most people don't understand. But you get what you get. And then you make the best of it. Yeah. And the difference between you being a meth head right now and being the person who I'm talking to, I think is just that. Just your expectation and your perspective, and your desire not to give up and whatever else gets blended in with that. But do you have any feeling for why? Why you're like this? No, not at all right?

Robyn 1:08:54
No, I just I think the expectation thing is, is big. Right? Like, I don't not that I'm a pessimist, but I don't set crazy expectations. I never had the expectation that I would, you know, be healthy my whole life. And then when my mom got sick, there's a lot of death and stuff in our family before that. But it's like, Oh, snap, like, you better wake up and right. It's not a guarantee. Yeah. So appreciate what you have and find the joy that you have. And I think like, and that's where your podcast is huge. Because it's it's regular people talking so it makes it normal, right? You don't have people coming on here that are like, Oh, I'm so fabulous. That type one and my child's a onesie is five and this and that. And it's more of like this is how we got to where we are but you see the real life part of it. So then you have a better expectation as to how it's going to go. And I don't know, I think I did that with the diabetes too. I still have an expectation that I can get her agency and To the low fives. But

Scott Benner 1:10:03
no, but you can.

Robyn 1:10:04
Oh, I'm working on it. I'm working on we're getting we're getting there. Where is it now? Last one was 6.30. Very good. Congratulations. So thanks. I am. I'm happy with that. But I'm trying to just always striving, right, what can I do better, but being okay with where I am, right, like acknowledging that that is a great emergency for a four year old. And, and going with it. So I think that's kind of where I am in life. We appreciate what you have, and where you are. Still looking forward, though, right? Like, Okay, what's next? Where am I going to go? And what's going to happen and and then try to get through it. I could sit here and be completely devastated and be like, I'm going to be on on disability and not be able to work. But what if I'm not what if it goes? Well, what if I find a way to keep this? What if I find a job that I can continue? Right at my pace, right? Like,

Scott Benner 1:10:58
even if the end result is horrible? There's no reason not to enjoy the moments leading up to it?

Robyn 1:11:05
Absolutely. Why would I be so down now? Because that's a possibility. Because then I'm going to make it come true.

Scott Benner 1:11:11
Yeah, you can't worry. I know I've said it before. But worry is a waste of imagination. You can't. Because when you're worrying, in most scenarios, you're just making up things that may happen in your mind and then worrying about them.

Robyn 1:11:25
You're worrying about it. It hasn't happened yet. And may know I'm saying this, I'm terrible at it. Like I definitely still worry, right. But I keep trying to check myself and be like, well hasn't happened yet. So you know, appreciate where you are. Well, listen,

Scott Benner 1:11:38
Rob, but if everybody could make conscious decisions that then impacted them, subconsciously, and then everything was okay, then we wouldn't need the podcast, we would just need to see we just need a short cheat sheet of like you'd read like, oh, Pre-Bolus and then just never not do whatever. Again, you do it every day. And that would be fine. And, you know, you know, when your site's went bad, and you change them without looking at them for 12 hours. And that's not how it works. You need to constantly be reminded to true. Yeah, do what you need to.

Robyn 1:12:06
Can I tell you my my Pre-Bolus horror from this morning? Wasn't? So my kids are home from school today, because they've been a bit under the weather. So lazy kids. I know right there. I've locked them in the basement. It's amazing. So she started Oh, wait, hold on, Canadian here. So let me see. I've got my chart. So

Scott Benner 1:12:26
while you're looking for the chart, I didn't know you could dig a basement in Canada, isn't it just like permafrost or something like that?

Robyn 1:12:34
Honestly, I'm sure in some areas, but not here. So she was sitting at like 8590 going into breakfast. Perfect. So she wanted waffles. So I give her if I give her like a link of a sausage before she eats cereal or waffles and we curb that spike which has been really good. So she eats her sausage. And then she starts drifting down. I'm like, okay, whatever, she's gonna eat skinny. And then she sits there and eats like half of her waffle and kind of looks around and like dawdles and now we've got alarms going off and she got down to how far down did she go? 2.6. Let's like 45 I'm like, dude, eat your waffle. And then she's one waffle and looks at me and she's like, I'm full.

Scott Benner 1:13:19
Well, my knees hurt the waffle.

Robyn 1:13:23
I'm like, Oh my gosh, okay, so we spend and it was fine. She had a yogurt drink and some grapes. And she's at a great spot right now. But I was like, of course, like, of course today, when I'm recording that you're gonna, you're gonna do this to me.

Scott Benner 1:13:35
So I gotta tell you, what did she ever get high afterwards?

Robyn 1:13:38
Well, no,

Scott Benner 1:13:40
I think it's a great day. I think that's amazing. I think avoiding high blood sugars is the key to this whole thing. So she

Robyn 1:13:45
got to 150 and then dropped right? Right down. She might go low now, but she's okay. Okay. All right. Looks doing it saying it's all good.

Scott Benner 1:13:53
Cool. All right, Robert. I really appreciate you doing this. I want to tell you something before we go. Apparently in 1969, a country singer songwriter named Joe South wrote I never promised you a rose garden. It was covered by a couple of male artists but never made a big until 1971. When Lin Anderson recorded it. It was number three on the hot 100 and top the country charts for five weeks, like that. And that somehow sticks in my head. And I don't know why. Other than my parents did listen to country music when I was growing up. And they did have an eight track player in the house. And when it was installed in the car. It was like we were rich that we had a car with an eight track player in it. It was an amazing thing.

Robyn 1:14:42
It was amazing. I didn't know of the eight track players but we never I never had one

Scott Benner 1:14:46
that was typical of technology. It was amazing. My dad looked like your dad when he was asking about that lady. You know, he was like, Do you see what we have here? Do you see? Do you see how we've ascended

Robyn 1:15:00
Oh, amazing.

Scott Benner 1:15:01
Anything we didn't talk about that you want to?

Robyn 1:15:04
We didn't really talk about diabetes, but that's cool. That's

Scott Benner 1:15:08
really interesting thing. The kids, okay, my podcast is hugely successful and helpful in your life, something like that

Robyn 1:15:13
was really successful and helpful. Yep, struggles were just struggling up in Canada. We don't have a lot of nurses for schools. So that's been a big, she's four and she doesn't have any, for teachers and educators will watch her Dexcom. But that's it. They won't do insulin or anything. So that's been a huge struggle. They actually refused her entry to school at the beginning of the year for three weeks. Lovely. So that was fun. I put on my skating hat

Scott Benner 1:15:38
and got that worked out.

Robyn 1:15:41
She got into mentally, but yeah, it's been a struggle for sure. But she loves it. She's happy.

Scott Benner 1:15:48
I gotta tell you, Robin, just hearing this story. Hold on. This story about your RA and everything you're going through. I wouldn't with you. So just think, I think if you're still moving a little scary, you

Robyn 1:16:04
watch out. And I'm over six feet tall. And you're talking about these expectations. You're gonna be six feet tall. It's like that's me.

Scott Benner 1:16:11
I also did not want to be creepy, but you're a ginger and people really do. They're scared. Right? A little bit. Okay,

Robyn 1:16:17
super creepy. Internet. I am a ginger. And a Taurus. Super Watch out.

Scott Benner 1:16:25
You're an old from the 80s a Taurus?

Robyn 1:16:29
Yes. Okay. From the 80s and then go longer than that.

Scott Benner 1:16:33
When was the fourth? Alright, is this is the last stupid thing we're doing together. Number nine. Hold on a second. Ford.

Robyn 1:16:38
People have stopped listening.

Scott Benner 1:16:40
There's no way by the way.

Robyn 1:16:41
They're like, Oh, I'm that person. I listen right to the end. Why are you still listening? You need help. For me, you might say something entertaining.

Scott Benner 1:16:52
afford to owe 86 to 2019 introduced in 85. For the 86 model year, six generations were produced over 34 years, a brief hiatus was undertaken between 2006 and 2007. They've been making that car for that long. That's impressive. It's a little sad to remember these things from when I was younger. All right, Robin, thank you very much. No problem.

Well, I'm gonna thank Robin first for coming on and sharing her story. And I'd also like to thank Ian pen from Medtronic diabetes and remind you to go to in pen today.com To get started. Of course, we're also going to thank you us med us med.com forward slash juice box or call 888-721-1514 It's easier to talk in the deep voice than it is to speak normally for some reason. I don't I don't want to be sick anymore. I don't want to be sick anymore. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. I really do appreciate that you guys listen

#780 Bold Beginnings: Treating Low Blood Glucose

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Test your knowledge of episode 780

1. What is the significance of blood sugar monitoring before exercise?

2. How does physical activity affect insulin sensitivity?

3. What should be done if blood sugar levels drop during exercise?

4. Why is it important to adjust insulin doses based on the type and duration of exercise?

5. What types of exercise are beneficial for people with diabetes?

6. How often should a person with diabetes exercise to see benefits?

7. What should be considered when planning an exercise routine for a person with diabetes?

8. How does regular exercise contribute to diabetes management?

#779 Lady In The Closet

Barbara has type 1 diabetes..

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#778 Robyn has Rheumatoid Arthritis

Robyn has Rheumatoid arthritis and a child with type 1.

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