#778 Robyn has Rheumatoid Arthritis

October 30, 2022Scott Benner

Robyn has Rheumatoid arthritis and a child with type 1.

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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