People with diabetes were encouraged to get a COVID vaccine early on when the shots were released. But what happens when you live with type 1 and another condition where the vaccine recommendation is more complicated?
Molly Schreiber lives with T1D and rheumatoid arthritis. Her doctors told her to absolutely NOT get a COVID vaccine due to treatment she was taking for the second condition. She was able to eventually get vaccinated then, despite taking precautions, she and her entire family got the Omicron variant. They’re fine now and Molly has a lot of good info to share. She also has several family members with type 1 and has a lot to say about how we care for older people with T1D.
Molly works at the Community Manager for Savvy Coop.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Type 1 Diabetes with Other Autoimmune Diseases
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Stacey Simms 0:00
Diabetes Connections is brought to you by Dexcom. Take control of your diabetes and live life to the fullest with Dexcom and by Club 1921, where Diabetes Connections are made.
This is Diabetes Connections with Stacey Simms.
This week, people with diabetes were encouraged to get a COVID vaccine early on, when they were released. But what happens when you live with type one and another condition where the vaccine recommendation is… complicated?
Molly Schreiber 0:35
And I messaged my rheumatologist and I said great news. My hospital has the vaccine in I can get an appointment. You know, I was super excited. And she called my cell phone immediately and says You could not get that vaccine and it was a gut punch. What do you mean, I can't get this vaccine,
Stacey Simms 0:52
Molly Schreiber lives with type one and rheumatoid arthritis, she was able to eventually get vaccinated, then despite taking precautions, she and her entire family off the omicron variant, they're fine. And she has a lot of good information to share. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show, always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. And one of those people had a really bad low last night, as most of you know. And if you are new, I will explain my son, Benny was diagnosed with type one right before he turned two, he is now 17. We use the control IQ system with Tandem and Dexcom. And I gotta tell you, it has been a while since that urgent low has gone off on my Dexcom app. And I really don't remember the last time he had an urgent low that he didn't treat pretty quickly. You know, he very rarely asks for my help. We are at the point now where I have turned off all of the Dexcom alerts except that urgent low.
But in the middle of the night, it was like one o'clock in the morning it went off. And I don't know, you know, usually I would have waited and just said maybe he's got it. He always had stuff in his room. But it was It wasn't in 55 It was 42. So I said, you know, I'm gonna just go check on him. And they brought up a juice box like I have done a bajillion times, you know, when he was little, it's so funny. I gotta say, you know, the juice box used to seem like a big deal, a big amount, I should say. But it looks so tiny. He’s now like six feet tall, but I brought it upstairs.
And it was immediately clear that this was a real low. This wasn't a compression low. He wasn't leaning on the Dexcom. He was disoriented, he was sweaty, he was super hungry. So he drank the juice box, I got him some crackers. And then I sat with him for a little bit. And he started to kind of come back to himself. But he was so hungry. And you know what this is like, I don't know about you. But he was sometimes I really try if I'm with him, which isn't the case all the time anymore. I tried to say you know, you've had you've had your 15 or 20 carbs or you know, when he was little you had your four to eight carbs. And let's just sit because you know, you're going to be okay. Now, you know, you're not going to be hungry in 15 to 20 minutes. But man, that urge to eat. I mean, I know his brain is screaming at him. So I was like, you know, forget this. I went downstairs and I got him some more food. I figured I can always give him more insulin for it and who knows. He just really still felt bad. So we overtreated which, again, we haven't done it a long time totally overtreated. And, you know, he finally felt better and was able to go back to bed. But you know, my adrenaline is like, through the roof. I finally did get back to bed. But I'm sure that he felt much worse than I did. I oh my gosh, it's been a long, long time. I'm sure many of you were asking, Well, what happened? The truth is I don't know what happened. I didn't ask him in the moment. I mean, he's 42 he's not gonna have a coherent answer. I don't really care. I just wanted to treat the low and then go back to sleep.
I’ll ask him tonight at dinner but I gotta tell you at this point, 15 years in the answer he has diabetes is good enough for me. My guess is he ate something and gave too much insulin. Or I know we put a new site on. Maybe that was like a super absorbent site. You know, sometimes that happens, you just hit that sweet spot. And it's just the insulin flows somehow a lot better in that place. If it was really interesting or unusual, I will report back but I only bring it up because it has been a long time. Since I've had to treat a low like that in the middle of the night. It made me remember all those times, you know, not just before control IQ but before Dexcom when that would have been you know a finger stick every five minutes while we were waiting for him to come up and you know, very different times. I hope we all get a better night's sleep tonight. And like I said, if it's anything really interesting or if there's a follow up here, I will let you know.
Alright, this week's guest is somebody I've known for a long time through the diabetes online community. She certainly remembers a different type of technology. We did get to meet in person at a healthy voices conference in Chicago nearly six years ago. We talked about that at the very end of the interview. That was so cool. Hold that conference was freezing. But man, I would love to go back to more in person stuff even if it's freezing. Molly Schreiber was diagnosed with type 1 diabetes as a child in 1989. Her father, grandfather and a cousin all lived with type one as well. In 2018, she was also diagnosed with rheumatoid arthritis. I follow Molly on social media, she's been very open about her struggle, not just with these conditions, but with how difficult COVID has been for her. You know, with autoimmune stuff, you want to be more careful. But her art a diagnosis rheumatoid arthritis diagnosis made getting the vaccine a tough decision. And then when her entire family did catch COVID During this omicron search, it made that more difficult to Molly has been a longtime blogger in the diabetes community. And I'll link up some of what she has written. She is currently the community director for savvy cooperative, and she explains more about that as we talk. I do want to say, you know, Molly really is an incredibly positive person, but she's not a Pollyanna. She keeps it real. And it was great to catch up.
Molly, welcome to the show. Thanks for coming on.
Molly Schreiber 6:08
Thanks for having me.
Stacey Simms 6:09
All right. Before we jump in, or talk about anything, I have to ask, how are you? How are you feeling as your family
Molly Schreiber 6:14
were okay, we all, you know, had the pleasure of having COVID Funnily enough, we pulled my daughter from college because it was getting pretty intense down there and gave her COVID When she got home, so really failed there. But no, we're all doing a lot better. It's been almost three weeks now. So
Stacey Simms 6:31
yeah, I'm glad. And um, you know, there's an awful lot to talk about leading up to that diagnosis, but I'm glad everybody's doing okay. Scary stuff. Yeah, this is usually where I asked people to tell us their diagnosis story. And I'd like to start there with one additional question if I could, because you don't live with just and I put that in quotes with just diabetes. Right?
Molly Schreiber 6:50
Right. I was diagnosed with type one diabetes, when I was a kid, when I was back in 1989, I'll date myself, and I knew a lot about the disease. So my father had type one or had type one and his father and then my paternal cousin. So type 1 diabetes was very much in my life, you know, needles were around testing. At that point, testing blood was not as common as urine. But um, you know, it wasn't a shock, I should say, a lifestyle change. We were already kind of living that. But fast forward to about 10 years ago, I was diagnosed with rheumatoid arthritis, which, yeah, the just living with both is definitely a challenge. They don't, you know, unfortunately, autoimmune diseases can come, you know, in pairs or in groups, you tend to be a collector, but they don't necessarily get treated, or even you have similar symptoms to each other diabetes and RA,
Stacey Simms 7:51
would you mind and Pardon my ignorance? Would you mind talking about RA for a moment what that is?
Molly Schreiber 7:56
Yeah, so the easy way to sort of translate it to the diabetes community is instead of attacking I slit cells, my immune system is attacking my joints, and specifically the synovial membrane, which is sort of that lubricating fluid that's in your joints is not immune disease, as well. So comes from the same family. As you know, and most of your listeners, we don't really know why yet, it happened to me very, I would say suddenly, and I had sort of just an elbow pain thought I grabbed a bag, wrong, you know, off of an airplane on on a weekend trip and just thought, I've asked to push that bag too hard or done something and within a month, I couldn't straighten that elbow. So my arm was bad. And I got to have the fun experience of doctors telling me I was favoring it or had tennis elbow or all sorts of fun things. But within a few weeks, I couldn't walk downstairs and I was sitting because my feet and my knees and just did not then did not work. And I quickly went to the doctor and just said something's really wrong. And unlike type one where you get a blood test, and you know, if your blood sugar is a certain number, there's a pretty good chance you know that you're going to be diagnosed with diabetes with RA, there is a blood test. Lucky for me, I tested positive but plenty of your listeners if they have RA they not not everyone test positive. So you could go down a very long treatment of trying to figure out what's wrong. What is the treatment? Is there treatment? There is there's a couple different treatments, so definitely medication. So you would start with what are called disease modifiers and the most common one that people might know of is called methotrexate, it can be used all these drugs can be used for cancer, but these are used in the RA and similar disease spaces in much smaller doses. So yes, you may if you look them up, see them referred to as chemo that they are just given in lesser doses. So we have those drugs. Most of the time. They don't do enough and you need something that's called a biologic and There are quite a few options. To be honest, this was the hardest part for me. All right, is that I went from living with type one, you know, basically my whole life and there's one treatment, right? There's insulin, everybody takes it. You know, we might have the rare person. I'm sure everyone's heard of someone that was maybe allergic but you take it it works. Does it work perfectly? No real? No, that doesn't always work the same. But everybody takes it. But with a biologic. And with other treatments with these arthritis, autoimmune conditions, it's a gamble. You know, what commercial? Did you see that maybe you want to try that one is a literal question from your doctor. Wow, it is a true gamble of what's going to work. They don't know yet. Why some jobs work and some don't for people and what works for me, if you were to be diagnosed with RA, it might not work for you. It's just a complete gamble. And they don't last forever. So some people have had success for a long time. Others have tried multiple drugs because they lose efficacy. We'd like to say that the drug failed the patient. Patients like us are tend to sort of internalize it and say, Oh, I failed that one. But no, we're gonna say that the drug failed that
Stacey Simms 11:11
I'm pausing here, I'm just gonna kind of stuttering because I'm trying to figure out how to ask this. What I'm trying to say is, with type 1 diabetes, and RA, you're mentioning insulin, you're talking about biologics and other medication, any dangerous interactions, anything that you specifically have had to look out for.
Molly Schreiber 11:24
Yeah, so a couple different things. So one of the initial treatments for rheumatoid arthritis, and it can be a treatment that a lot of patients stay on are steroids. And so plenty, you know, if you have diabetes, and you've ever, you know, had even a horrible bronchitis or pneumonia, or maybe you've had to get a steroid injection, you know, that horrible boost, your blood sugar is going to take them after you have started either that steroid pack or you've had that injection, well, a lot of patients are on a long term dose of steroids. For me, that's simply not an option. And I say that for myself, because, to me, the the struggle of managing my blood sugar as well on them. And also just the feeling of being on them is not worth the side effect of the you know, I'm not getting enough bang for my buck, you know, with with a steroid, so it's not worth the added stress. That's not to say you can't manage steroids, you know, our pumps and our different basal rates and everything, do great things. And I even have a steroid profile in my pump. If for when things get bad, yes, I will go on them. I'm not going to be too prideful. But steroids are first line of defense, they make you feel better quick, they get you back to life, you know, and for me, there's that added habit of blood sugars. But then there's also that little piece of how we're susceptible to getting sick, you know, where our cold takes a little longer for us to recover from, you know, and when you're on these additional medications, you want to keep your blood sugar in check, because when it's not, you're feeling worse, and you're more susceptible to those complications. So there's just that added caveat, you know that you want to stay as healthy as possible, but you're on these drugs that are really, they're calming down your immune system, so it stops attacking you. But in that same breath, they're also not preventing you from getting sick.
Stacey Simms 13:17
I'm going to come back to your family's experience with type one as you listen, I don't want you to think that I'm going to skim over that we're definitely going to revisit that. But keeping our conversation about ra here with COVID. You are one of the first people I remember seeing on social media in my circle, certainly that was talking about issues with either being able to take the vaccine or wondering about being able to take a COVID vaccine. Is that because of the biologic or the medications or is because of the RA condition itself?
Molly Schreiber 13:48
Yeah, so it's a little bit more on the medication side, but a lot of patients again, are on a ton of different biologics. And so at the time when vaccines first came out late in December of 2020, as their confer hospital then and with that came with being eligible to get a vaccine early, which is great. Sounds wonderful, right? I was super excited that I was in a drug club or Texan or Texans are really strong line of defense. With Ra. It's used a lot with non Hodgkins lymphoma as well. It's pretty in terms of the drugs you could be on. It's a pretty heavy hitter, but when I went on it three years ago, I needed it. My disease was in a space that needed it and it worked. I just had an infusion. So vertex in isn't infused by logic. Some people get it once a year, the earliest you can get it is every four months to talk to infusions every four months and repeat. So I was on that schedule, and I'd had an infusion in October, and I messaged my rheumatologist and I said great news. My Hospital has the vaccine in I can get an appointment. Yeah, super excited. And she called my cell phone immediately and says You could not get that vaccine and it It was like a gut punch. What do you mean, I can't get this vaccine. And she said, look, the ACR, the American College of Rheumatology, you know, like a lot of us even still, to this day, we don't know everything, still trying to figure it all out right in terms of COVID. But they know that you need to at least be as far away from that biologic infusion injection as possible for the vaccine have a chance to work. And since I had just had it, I wouldn't be due for my next one until March or April. And she said, We got to try to get you to March or April. And there is a little bit of history behind this. So a lot of patients that have been on vertex in the flu vaccine, for example, doesn't work in one dose, sometimes it's recommended that they get two doses to be able to have an immune response. So they at that time, were kind of basing it on that. And so I waited. And it was incredibly frustrating. I'm pretty sure that's probably what you saw on my social channels, was that here's this thing that we've all been waiting for, with the promise of it, getting back to our lives, but also the promise for, you know, auto immunocompromised patients like myself to feel a little bit more safe, you know, we could get this vaccine and finally feel safe. And I just couldn't get it. And so I had to wait. And the only other thing that came with waiting as I went back into our sort of statewide system of trying to get an appointment, which I think everyone probably still have stories, I'm getting an appointment or getting a test and had to wait and get my initial vaccine. I got that in April, when I was earliest I can get an appointment.
Stacey Simms 16:40
I feel like I may have missed something. I'm sure you said it. Did you have to go off your medication and in order to get the shot to get the vaccine?
Molly Schreiber 16:47
Yeah, so with the toxin and retexe intakes, obviously, everything varies, but the the longer you can have it out of your body, the better. So your body can start, you know, kind of revamping and not being so suppressed. And so with vertex and they wanted me to try to wait six months, I sort of made my own compromise of April, it would have been nice. And with that came a discussion with my rheumatologist. And she frankly told me that she wasn't keeping any of her patients on this drug until COVID was sorted. And this was again a past discussion now, right? Right now it's as we know, we're not going to stay on this drug because of how unprotected you can be against these viruses that are popping up. And she and I agreed that since I still had some other options on the table, that I would try something else. And retexe in its place, obviously, if she had patients that truly, you know, it was the difference between walking and not or, you know, work and not she was not going to take the drug away from them. But we had to have a frank discussion and with our eye, again, back to what I said earlier to gamble when you take a medication, so it was another Okay, Let's gamble and see what this next one might do. While I was on one that was working.
Stacey Simms 18:10
And then after all of that, like many who were vaccinated and boosted buzz, you know, being very careful. Masking up. You got film Kron virus got you got omachron. So I hate to say like, what's your reaction? Because I think we would all have the same reaction. But you went through so much.
Right back to Molly in a moment, but first Diabetes Connections is brought to you by Dexcom. And I get a lot of questions about Dexcom coverage for people on Medicare. And why not, it's not just that you stopped needing a CGM, the minute you turn 65. The good news is that the Dexcom G six continuous glucose monitoring system is covered for Medicare for patients who meet the coverage criteria. If you have either type one or type two diabetes and intensively managed insulin you may be covered. To find out more about what that means. And if you qualify, check out dexcom.com/g six dash Medicare and I will link that up for this episode. You don't need to write it down. It will be in the show notes at the homepage at diabetes connections.com You're going to want to talk to your doctor and you may even be able to get your Dexcom supplies at the pharmacy saving time and money learn more again it's dexcom.com/g six dash Medicare. Now back to Molly talking about her family's experience with COVID.
Molly Schreiber 19:37
So I'd had my two doses that are that had the Pfizer vaccine I had an April and May and then I actually got a third dose that they're not calling it a booster but a third dose and August because it wasn't that six months but they offered it to patients that were immunocompromised this is I know there's so much has come out from the FDA and the CDC this probably was a blip But that
Stacey Simms 20:02
now remember, right? Yes,
Molly Schreiber 20:04
it was a blip and but it was a big blip for me. And so I went and got a third dose all along. I had participated in a research study through Johns Hopkins, which I know a lot of patients have done in, they were just trying to see efficacy in the vaccine with patients with different kinds of autoimmune conditions or health conditions. And so they tested your antibodies before and after each of your vaccine doses. So with my first two, I didn't have any antibodies. I got my third dose so quickly, because I was so excited that happens hadn't been ready with their lab slips yet. So my rheumatologist tested me in November, and showed that I still didn't have antibodies. And I found that out the week before Thanksgiving, and she said, you know, you really need to just stay in your bubble. And I'm like, I've been in this bubble for a long time. But like I mentioned, I have a family. You know, my husband works at the airport, my son works, my daughter goes to college. But luckily, everyone, like you said, We're maths, they're all vaccinated and boosted. Everybody was good. We daughter's college was getting a rise in cases, and they switched exams to online. So my husband ran down and grabbed her right, the week and a half before Christmas. And then that Saturday before Christmas, we all thought a little off. And knowing that there are monoclonal antibodies that I could maybe get, if I were to get COVID, I've been instructed multiple times by all of my doctors, you know, you get these if you get COVID, call us, we took a test, my husband was positive, I was positive, my daughter and my son, and I didn't see it coming, like I said, grabbed my daughter and brought her home and gave her COVID. Right. At school, I really missed the mark as a parent on that one. But it's not a cold, it's not a bad cold. It's not what I guess a lot of people are sharing, at least it wasn't for my family. And I know that I mentioned that I didn't have any antibodies, but my family dead, they're healthy. They're my daughter's 18, perfectly healthy, and had the 102 Fever, the vomiting, the cough, the body aches like you couldn't imagine. And I the sounds so awful to say but they actually understand a little bit of what our eye fatigue is now, because it was so intense with with COVID that I just said, you know, when you felt like you didn't have that extra oomph to pull on. That's what it's like. So I did get a little taste of that. But now, you know, we're about three weeks out doing so much better. But I'd be lying if I didn't say it was a little scary, you know, at times, especially with where our health system is right now.
Stacey Simms 22:43
I'm so glad everyone is doing better. I know so little about Ra. So forgive me if this is a dumb question. Are there lingering issues or concerns that now you have to think about in terms of what medication you're able to take or anything like that, because of having COVID?
Molly Schreiber 22:57
There are so with my rheumatologist, we've been kind of you know, going back and forth. I'm incredibly thankful for portals because I could send messages whenever I had energy, it was great. She said that there's a couple things to be concerned about. She said that they've seen that a lot of patients with autoimmune conditions tend to shed the virus longer so that I'm going to say 10 days I know now it's five days, whatever it is, right? When you listen to this podcast, whatever amount of days it is that they're saying you need to quarantine for, they're saying that they're finding that patients like myself can shed it longer. So that is a concern for you know, if I were to say, Hey, I'm good and you know, go to the party I haven't gone to in many years, that's a concern for the public that the other thing is because I could still be shutting it. They're not sure when to start my biologic backup. And so basically, we're kind of going week to week my rheumatologist just wants to make sure I have zero symptoms, just not even a cough or runny nose. Nothing that could you know, taking something to oppress and suppress my immune system, you know, could trigger and so there's there's that but really, it's just the twofold wanting to keep others safe of them still shedding, you know the virus longer because like I said, we missed Christmas and my mom, you know, was like, well, when can I come up? And I'm like, I don't know. I just don't know and I'm never gonna put her at risk. So I think there's still as awful as it is so many unknowns right now.
Stacey Simms 24:34
How Okay, nosey question you don't have to answer How were your blood sugars? Was it difficult to manage? Did you do okay during all of this,
Molly Schreiber 24:41
so that is how I knew it was coming honestly, I think a lot of patients would probably identified that they could tell Oh, I should have known I was gonna I was getting sick, my blood sugar's are higher but my family got very sick that weekend. And on that Sunday, kind of boasting that the one with no in bodies just had a runny nose, you know? feeling great. And that night, my blood sugar started going up. And for me, you know, I'm home, I work from home. Like a lot of people, I kind of have a routine, you know, if I eat or drink, you know, that boring stuff that you can do with diabetes for a long time. And so my blood sugars are pretty good. Of course, there's random days for you're like, What in the world is happening, but this was consistent. This was, you know, I'm not eating something. And I'm just high, you know, it is just higher than normal. And the next morning that Monday, I woke up with 102 fever and felt awful. I actually used I mentioned earlier that I had a steroid personal profile in my pump for when I do get infusions, they come with that infuse steroids, and it has a higher basal rate and a little bit more of a carb ratio in there. And I put that on when I was sick. And so that helps with keeping my blood sugar's under control when I just wasn't feeling well enough to even deal with my pump. Honestly, I was very grateful that I already had that setup. Might be a little too aggressive. I'm not sure. But it was nice, because I don't think I would have had the energy to think through a whole new basil program.
Stacey Simms 26:13
Yeah, definitely. I totally understand that. And it's funny, as soon as you said, you look back at those blood sugars. Oh, yeah, I should have seen it coming. I mean, Vinnie said diabetes for 15 years. I can't tell you how many times we still say oh, yeah, three days?
Molly Schreiber 26:26
Oh, I still do. I've had it for over 30. And I'll be like, should I know that was coming? I've only been through this a million times. Right? Oh, it's always after during you're like, why am i Hi? She makes no sense. And then the next day or like,
Stacey Simms 26:42
you know? So, as you said, You've lived with type one for 30 years, you were diagnosed in a family that was familiar, but at a time you said 1989? Where I'm guessing, you know, my recollection, home meters are just being introduced that sort of thing. Tell me a little bit about your Dad's experience with type one, if you don't mind.
Molly Schreiber 27:01
Yeah, my dad. So my dad was diagnosed in the late 1950s. And so my dad was in the time of boiling needles of no blood sugar testing at all, a lot of guessing. He would say just living his life as a teenager without thinking much about diabetes. He got there serious about his diabetes a little bit later. But because he had sort of grown up in this non technology way of managing type one. He thought it was great that I eventually got meters, pumps and everything. But they weren't for him. CGM weren't for him, nothing was for him, he would see the value for me that it was never. But it's funny when I see that funny, but I look at kids now. You know, I remember. And it's still a fear, but it was a strong, you know, fear of my, my own children getting tightwad, you know, I just, you know, you don't want anyone to experience anything that they don't have to. And so looking back, you know, I didn't have a meter at school, because we had a home meter that sat in the bathroom, you know, I had a snack every day, you had to eat your snack at the same time. And I that was my like, big cool thing about having type one in elementary school, but I look back and you almost have a moment of going, how did I survive all that, like, I didn't have this thing beeping on May 24/7, to tell me what my blood sugar was doing. And I went to gym class and I, you know, I, I survived. And so I a lot of that, I'll look back on you know, when technology fails, or you know, a server's down and all this, I just think back to the fact that I would go to school all day, without a meter with a pack of graham crackers, you know. And I'm still here, and I'm okay. And my dad, on the other hand, my dad, he learned sort of a way that I think a lot of people with type one, including myself, you can kind of slip into where you're very regulated, you know, dinner has to be at 630 because your body has to eat it. You know, and our pumps and everything and our short acting insulin have really given us flexibility, but my father was very regimented, because that was how he survived. You know, that was the insulin they had that was knowing how much food to have in his body at certain times. And so even my husband jokes that family dinner time is 630 because when he came into my family, that's what my father did. That's when he had to take insulin.
Stacey Simms 29:34
Did you say your grandfather had type one? Yeah. So
Molly Schreiber 29:37
my, my grandfather, my dad's father had type one as well. He passed away, right? Shortly before I was diagnosed with type one due to complications, but you know, it's so varied. I don't really even know. At that point. He never would have even experienced a glucose meter.
Stacey Simms 29:56
He diagnosed you know, the date or the year.
Molly Schreiber 29:59
So my dad was born in 48, January of 48. And I believe his father was mid 20s, when he was born so early, a long time ago, and so my dad got it. They used to tell him that diabetes always skipped a generation and a sex. Have you heard that I'm sure you have. And so my cousin who's female has it as well. And that really fed into my dad's thinking of that my dad was the oddball that if he hadn't gotten it, it would have fit the, you know, the mold would have followed the program, you know, but he really blamed himself that I got type one, he really, you know, for a long time, it was really hard for him, but he's also the one who knew to test my blood sugar. You know, my mom took me to the doctor 10 times, and I poison ivy that gave me type one of all the things I got poison ivy, and then just stopped eating and got out, went to the bathroom a million times, and my dad got frustrated and tested my blood sugar. So he didn't see it that way that he had saved me, he thought that he gave it to me. So it's a heavy emotional burden.
Stacey Simms 31:14
It's really hard. Yeah, such an emotional experience. And that's, you know, it's so difficult you think about the tools that that generation didn't have, and how they they did the best they could,
Molly Schreiber 31:22
yeah, so my dad, he, you know, had a bad low when he was living on his own. And this was back in 2015. And he fell and hit his head. And, you know, my father had had a onesies bill of five. And when I say that he lived a very regimented life, he did because that fear of, you know, what could happen if you didn't manage your diabetes was very prevalent, you know, for him growing up. And you know, he had laser eye surgery at Hopkins, when they were still testing on monkeys, like he had a very real fear of losing a limb and more, you know, really suffering. And so he managed himself extremely tightly. And that came with a lot of lows, you know, and we'll all say that your agency is only reflective, you know, of the broad range, you know, it doesn't show the 30s, you know, that you had, and even growing up, he had bad lows, I have many recollections of ambulances coming to the house. And so he had a bad low has had and was admitted to a nursing home, because he just wasn't 100% Ready to care for himself. So just rehab sort of the the problem is, and kind of mentioned this with technology. So we have the tech, right, we have glucose meters in every office everywhere. But even the nursing home staff didn't understand what type one was. So he would tell them, I need my insulin transferred from the hospital without any insulin, she would say, you know, be put down as non compliant. One of our favorite words, right, because he wouldn't eat because he knew his blood sugar was high, but they wouldn't test it, they wouldn't give him insulin, they thought he was just like a type two. And if he wasn't going to eat, he didn't need any insulin. And they would reference him and he said, it doesn't matter what type I am, I need insulin. To the point that, you know, he, no matter how much education we tried to provide, no matter how much he tried to provide, on his end, there was even one night he called an ambulance from his nursing home bed for insulin, because he needed insulin. And the true story is he ended up in DKA from this, and he passed away from it simply because nursing home staff and I'm not generalizing, I personally have not been in a nursing home, but I can only go by his his information of what's happened and others have shared, they simply didn't understand that insulin, you know, is, is air and water for us, you know, we need it, we cannot live without it, and ended up in DKA and didn't come back. And that all stemmed from lack of understanding diabetes, which has been around forever. I just mentioned my great career, my grandfather, it's been around a long time. And so it's really important to me and I, I've talked with a lot of fellow diabetics who are, you know, and early 40s. And we've talked and it's a real fear. And that kind of comes into COVID. You know, what if you end up in the hospital, and can't manage your own disease? And so I think that that's a real fear, even today, you know, if you get COVID, if God forbid, you know, need to be on a ventilator or just are unable to care for yourself what happened?
Stacey Simms 34:36
No, it's absolutely terrifying. And I know that sharing that story is not something that you do lightly. You know, it really is amazing to see these concerns. I don't know how well they're being addressed. All we can do is keep talking about them, and keep educating. So thanks for bringing that up. I do appreciate it.
Molly Schreiber 34:54
Yeah, I don't have the answer. Like you said that. I think we'll figure something out of everyone just shares and
Stacey Simms 35:00
Before I let you go, I do want to ask you about your job because you're, you know, we've been talking what we basically talked about for the last few minutes is patient advocacy. And that is something that you are you're doing in your job day to day with savvy, tell me a little bit about what this organization is and what you're doing.
Molly Schreiber 35:15
Yeah. So savvy, cooperative, founded by two patients to Jen is in the juvenile arthritis space. And Ronnie are other co owners, the cystic fibrosis space and like myself, like probably a lot of people you know, and even you to have had the pleasure of being at, you know, the different tables, you know, pharma tables, companies that are trying to make products better for, you know, all types of different health conditions. And eventually, like myself, Ronnie, and Jen found themselves looking around the table and you see the same faces. And I've met some great friends that way. But are, you know, are all the white women at the table really representing the patient voice of rheumatoid arthritis? You know, and we're being asked questions like, well, what does someone do you know, when they can't afford rent or medication, I am privileged enough to not know what that feels like. And a lot of people are in So Jen, and Ronnie just said, What can we do. And so they started this Co Op. And what that means by a co op is a co op is owned by its members. So we're literally a patient owned organization. And what we do is, quite simply, what I just said, is try to bring every voice to the table, try to have, you know, if a product is created for the HIV community within the HIV community to be at that table, creating that project, you know, and that product and medication and treatment. And so that's just like a very nutshell of what we do.
But we basically have people come to us, and they want to know more about a health condition, or they have an ideal treatment, or medication or an app, or a variety of things. And they asked us to find the people and maybe do the research and do the interviews, and at the end products and ideas and medications or treatments are being co created with the patient, rather than the patient at home seeing a commercial and going well, if they'd asked me, I would have told him that doesn't work. benefits, both the company and the patient. And thing I like to share that's a great example of what we do is a lot of people have heard of Amazon, I'm going to go ahead and assume and maybe even Alexa, and they did a study with us where they wanted to improve Alexa so that people would voice impairments, like stutters and different things could communicate better with her. And now they have a patch that anybody can get add into their Alexa. And it lets more people use that technologies here. And so that is just a small example. But I think it's a great one, you know, showing how something that they took to actual patients and had patients use and give feedback now benefits the greater world and all patients. And so that's what we do, I realize I give a very, you know, nutshell, I work in communities and the community director, which means I get to talk with patients and partners organizations all day, which is a great fit for me because as a patient, which is gathered by now, I really wouldn't want any patient to not feel like they're part of the community, and that they're alone in their journey or that their voice isn't important. So if you know one person hears this, and it's like I've already in diabetes, which I'll reference the great Rick Phillips did for me years ago, made me feel like I wasn't the only person that had those conditions. And if that happens because of this will Stacy, you've done a huge job. I haven't been here.
Stacey Simms 38:57
I hope that happens. It's really as we've learned over the years, right? How just knowing that there's somebody else out there going through the same stuff makes a huge difference. Just one more checking if I could with your family. You mentioned you picked up your daughter, you know you wanted to keep from having coverage came home Scott COVID. How's everybody doing now?
Molly Schreiber 39:14
Everyone's doing okay, much, much better. But it's not lost on me that anyone can get this again at any time. So we're staying in a safe and our masked bubble for now.
Stacey Simms 39:25
Gosh, well, thank you so much for joining me it's so much fun to talk to you. I just you know I have to mention I remember when we first met I don't know why this just popped into my head maybe it's cuz I was I just miss traveling so much. Did we meet in Chicago
Molly Schreiber 39:37
at healthy freshmen airport? We I was
Stacey Simms 39:41
Yeah, I was wearing that blanket thing that I wear like really heavy winter coat anymore. Yeah, we met in the airport in Chicago. Geez.
Molly Schreiber 39:50
Yeah, that's where we met and I it was one of those great moments where you're like, I know you but now I actually know you you know like, it's like my honor. Lying knowledge and then by in person, which is the best because you really know people then
Stacey Simms 40:04
isn't that the time when there was this thing going around the internet, the kids probably call it a meme. But there's this thing going round where it was like, the only really good thing about the internet sometimes is when you meet someone in PR person that you know from online, it turns that first meeting from a handshake to a hug.
Molly Schreiber 40:20
Yes. That's what it is. Yeah. And I do now right now, I picture us waiting for our car together. years ago, too many years ago, because we've been traveling so long.
Stacey Simms 40:34
Oh, my gosh. All right. Well, here's to travel in the future. At some point, Molly, we will grab that cape blanket thing out of my deep recesses of my closet and we'll we'll meet again.
Molly Schreiber 40:45
Yes, we well.
Stacey Simms 40:51
You're listening to Diabetes Connections with Stacey Simms. I will link up more information about a lot of what Molly talked about there, including information about savvy cooperative, yes, that is the group that I have linked to in some emails. And in the Facebook group, a bunch of you have signed up to take part in their research studies. So if you're interested in that, be on the lookout, when it's relevant to our group, I will definitely share that with you. And sometimes there are opportunities to get paid, which is always nice.
It was fun to think about travel again, by talking to Molly and I have some things tentatively on the calendar, you know, you're always afraid now to you know, we got to make plans. But who knows. So I'm excited. In March, I should be going to Syracuse, I have an event at Syracuse University. This is an annual or at least it was before COVID and annual alumni event that I always have a lot of fun in. I'm trying to set up some kind of diabetes event as well, maybe for moms, maybe for families. So I'll keep you posted on that. I am talking to some local diabetes people in the Syracuse, Central New York area, and hopefully we can work something out.
Then at the beginning of April, friends for life Indianapolis is on registration is open. I still haven't pulled the trigger on that I haven't committed to going yet. But I'm pretty sure I'm going to maybe you can help me make up my mind. I think I'm going to be there. But regardless of me go if you're in that area, this is a great regional conference. And the hotel has like these train car rooms. It's a train station that's now a hotel. Definitely check that out. And looking down the road. There's gonna be some local events here in the Charlotte area in April and May and then it'll be friends for life in Orlando in July. So I'm hoping that there will be more in person events as the year goes on. Cross your fingers and hope we stay safe. Man, I'm not sure that it's I'm ready to say anything about a return to normalcy, but it would be a lot of fun to just see some people again and make those connections that you can make them online but there is just you know, as you know, something so different about him person, and I missed that. I miss that a lot.
Alright, thank you, as always to my editor John Bukenas from audio editing solutions. Thank you for listening. Wednesday, it is in the news. Don't forget I do this every week. We are live on social media and then it becomes a podcast episode that'll be out on Friday, just five or six minutes of news in our community. And next week's interview. Have you heard about the Sigi pump? This is a brand new insulin pump. It looks like it's going to be a competitor to Omnipod. There's some really cool features. It's not here yet, but I'm talking to this company about why they are trying to bring it to the US as soon as next year. We'll see what happens with the FDA and everything else but man this pump is really cool. And I can't wait to tell you more about it. Alright, that is all I am Stacey Simms. I'll see you back here soon. Until then. Be kind to yourself.
Benny 43:44
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged