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Scott Benner 0:00
Hello friends and welcome back to the juicebox podcast.

My guest today is Jamie. She has ADHD and type one diabetes for 34 years. She works in orthopedic surgery, and this is her story. Please don't forget 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. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juicebox at checkout. That's juicebox at checkout to save 40% at cozy earth.com when you place your first order for ag one, with my link, you'll get five free travel packs and a free year supply of vitamin D drink, ag one.com/juice box. The Diabetes variables series from the juicebox podcast goes over all the little things that affect your diabetes that you might not think about, travel and exercise to hydration and even trampolines. Juicebox podcast.com, go up in the menu and click on diabetes variables.

Did you know if just one person in your family has type one diabetes, you are up to 15 times more likely to get it too. So screen it like you mean it one blood tests can spot type one diabetes early, tap now talk to a doctor or visit screen for type one.com for more info. This episode of The juicebox podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour, next.com/juicebox this episode of The juicebox podcast is sponsored by the only implantable sensor rated for long term wear up to six months the ever since CGM, ever since cgm.com/juice, box.

Jaime 2:14
Hi. My name is Jamie. I live in New Mexico. I have been a type one diabetic for almost 34 years.

Scott Benner 2:21
Wow. How old are you?

Jaime 2:25
I will be 45 in slightly less than one month.

Scott Benner 2:28
Okay, so how old were you when you were diagnosed?

Jaime 2:31
I was 11 June, 11, 1990 okay,

Scott Benner 2:36
you were 11 in 1990 Yes, okay. I got it diagnosed out of the blue. We were always

Jaime 2:45
very much I think I maybe had like a stomach virus or something, a month or two before my diagnosis. Maybe it wasn't a stomach virus, maybe it was just my pancreas crapping out on me, I will never know, but I rapidly became very sick not very long after school let out for the summer and ended up being diagnosed in a fanfare of DKA and near death experiences. So

Scott Benner 3:11
oh my gosh, do you have brothers or sisters? Were your parents together?

Jaime 3:15
Yes, they were, and I they were until my father passed away two years ago tomorrow, as a matter of fact, oh gosh, I have a calf brother on my dad's side who's 12 years older than me, and I have an older sister and a younger sister. We are all about 18 months apart.

Scott Benner 3:33
Are you the only type one? No, who else.

Jaime 3:36
So my older brother was also diagnosed at age 11, and that would have been 1978 and my younger sister is also type one, and she was diagnosed just about two years after I was so we were all around age 11 at diagnosis. Wow, yeah,

Scott Benner 3:58
this is your dad's side, right? Because you have a one of those.

Jaime 4:00
Just my brother is my half brother. My sisters are my full biological sisters.

Scott Benner 4:06
Yeah, but I'm saying, if your brother is a half and he has one

Jaime 4:10
too, if it's genetic, yes, we have a lot of autoimmune diseases in our family on my mother's side, just none of it is type one. My dad's younger half brother, his father's son, in his second marriage, was a type one diabetic. He passed away in 1994 from complications of diabetes. You

Scott Benner 4:32
know, there's times I think, as I'm talking to people and I'm going like picking through their like their family trees, it really does feel like if there's some autoimmune, doesn't have to be type one, but some autoimmune on both sides. For the parents, it really seems to ramp up. The likelihood, you know what I mean,

Jaime 4:47
I feel like you're right, you know? And as a nurse, I see that a lot. I work in orthopedic surgery, and I see a lot of patients having surgeries because of rheumatoid arthritis or lupus. Or both. Sometimes Ehlers Danlos Syndrome, which isn't really an autoimmune disease, but it seems like people with EDS often have ConCom auto immune diseases. So it's really interesting to see all the different sides of that. And I have more than one auto immune disease myself, as does most of my family. So what else are you packing? I was just diagnosed with Graves disease in December of 2023 and I have some other stuff going on that we aren't quite sure whether it's auto immune or not. I have some pretty significant symptoms of pots syndrome that have worsened in the last few years, and so I have pretty moderate joint hypermobility, which i i believe may be associated more with with my ADHD than anything else, but it does cause me some issues. My rheumatoid factor is high when I get blood work done, just not high enough to diagnose me with RA, thank goodness.

Scott Benner 6:03
What's the connection there between the RA and the hypermobility,

Jaime 6:08
not Ra? ADHD, no,

Scott Benner 6:09
that. I'm sorry. I misspoke. I was thinking. I was thinking ADHD. And said, ra, sorry, yeah,

Jaime 6:15
I have ADHD. I was doing some research. I think just a friend kind of happened to off hand mention to me, having seen some kind of article about joint hypermobility and ADHD and I started digging into that. I love researching things. I'm kind of a research junkie. Just don't ask me to write a paper. I might do it the night before it's due. It'll be really well written, though. So I had read some studies where a pretty high percentage, like 60 to 70% of persons with ADHD often also have some type of joint hypermobility disorder, and from what I can remember reading, it's related to how the prefrontal cortex in the brain functions, as well as there's a specific part of the brain that kind of tells your body what to do with things that are in your bloodstream, like vitamins, minerals, things like that. And there is a study going on at Tulane University where they're showing persons the you know, persons who have ADHD also tend to have higher levels of vitamin K in their bloodstream, and the reason is because whatever part of the brain that is affected by ADHD is also happening to be the part of the brain that tells your body how to absorb vitamin K into your soft tissues. And it doesn't work, right? So you tend to have those higher levels of vitamin K because they're not being absorbed into your soft tissues and telling them exactly how springy to be. And so they're hyper mobile, which leads to frequent injuries, frequent dislocations, you know, and then as you age like me, you get stiffer and more likely to injure yourself, whereas in my youth, I was extremely flexible,

Scott Benner 8:10
and they're just treating these people with folate from the very beginning, your kids mean everything to you. That means you do anything for them, especially if they're at risk. So when it comes to type one diabetes screen, it like you mean it. Now up to 90% of type one diagnosis have no family history, but if you have a family history, you are up to 15 times more likely to develop type one screen. It like you mean it, because type one diabetes can develop at any age, and once you get results, you can get prepared for your child's future. So screen it like you mean it type one starts long before there are symptoms, but one blood test could help you spot it early before they need insulin, and could lower the risk of serious complications like diabetic ketoacidosis or DKA, talk to your doctor about how to screen for type one diabetes, because the more you know, the more you can do. So don't wait, tap now or visit screened for type one.com to learn more. Again, that's screen for type one.com and screen it like you mean it the contour next gen blood glucose meter is the meter that we use here. Arden has one with her at all times. I have one downstairs in the kitchen, just in case I want to check my blood sugar. And Arden has them at school. They're everywhere that she is. Contour, next.com/juice, box, test strips and the meters themselves may be less expensive for you, in cash out of your pocket than you're paying currently through your insurance. For another meter. You can find out about that and much more at my link. Contour next.com/juice, box. Contour makes a. Number of fantastic and accurate meters, and their second chance test strips are absolutely my favorite part. What does that mean, if you go to get some blood, and maybe you touch it, and, I don't know, stumble with your hand and like, slip off and go back, it doesn't impact the quality or accuracy of the test. So you can hit the blood, not get enough, come back, get the rest without impacting the accuracy of the test. That's right, you can touch the blood, come back and get the rest, and you're going to get an absolutely accurate test. I think that's important, because we all stumble and fumble at times. That's not a good reason to have to waste a test strip. And with a contour next gen, you won't have to contour next.com forward slash juicebox. You're going to get a great reading without having to be perfect.

Jaime 10:50
That's one of the things they were talking about in the article. Forgive me if I can't recall all of it, probably six months since I read it, but it's very interesting to see. Yes, so the different ways to approach that. You know, I've noticed that I have more orthopedic issues because of my hypermobility now that I'm in my 40s, especially since I'm an active, athletic person, to be really careful about what I do sometimes, one time, it saved me from severely breaking my ankle. I'm pretty sure my my knee doc that I work with seems to think that the reason it didn't break is because I was so mobile that it bent and just resulted in an absolutely horrible spring. It was during a dance performance a little over a year ago, came down the wrong way and the ankle bent like a hockey stick, but it didn't break, and I couldn't believe it,

Scott Benner 11:43
huh? Also, it's interesting, this folate that they're using in the study is methylated, is

Jaime 11:48
it? Yeah, okay, I didn't, I don't know. I don't even know if I got that far, at least, don't remember. I've slept since then.

Scott Benner 11:55
I've been picking through, like, trying to understand methylated vitamins and folate a little more. This is very interesting to me. I'm so glad you brought this up. Well, I

Jaime 12:06
was reading about this before I found out I had graves, and then that diagnosis explained a few things that had been going on, you know, probably for at least the six months prior to my diagnosis. And I thought, oh, gosh, that makes a lot of sense now, but I never would have thought it was graves. I just happened to have an endocrinologist who looked at me at during an appointment and said, we need to do thyroid labs. And I said, Yeah, it's probably about time for that. And she said, Yeah, but I don't like the way your hands are shaking and I don't like the way your eyes look. She said, Doesn't somebody in your family have grave disease? And my older sister has graves. She is the one of us who is not a type one diabetic, but she does have Graves disease, though she had a radioactive iodine ablation in 1998 I believe. And so we did my labs, and there it was. I mean, just very thyrotoxic, extremely, extremely suppressed. TSH, it was crazy how suddenly that happened, and your

Scott Benner 13:03
your eyes were bulging.

Jaime 13:04
She said, I had the stare. And look, I didn't think that. I mean, I've always had kind of big eyes, and so I thought I'm fine, but I wasn't fine. And now, now looking at pictures, I can see something was a little bit different. It was not severe. So I do have some exomos. She did send me to see a thyroid eye specialist, and that was confirmed. And she said, you know, that generally gets better after a while, once you start treatment. It's not real obvious, though, so I couldn't really tell. Interesting. Yeah, it's, it's been, I was not expecting to get that diagnosis at my age. Why? Why did you think I feel like most people who have graves are diagnosed much younger in life, unless they have Hashimotos that converts to graves. Now I have listened to the entire thyroid series for juicebox podcast. I had long suspected there might be something wrong with my thyroid. But on the other end of the spectrum, my mother also has Hashimotos, and so does my younger sister, who's type one. And just the tiredness, the extreme fatigue that I mean, you literally feel like you're dying sometimes, you know, and you can't straighten that out. It's you know, you already have one auto immune disease. And you're, you're, you know, got all this stress in your life, and there has been plenty of stress in my life over, over the years, so you don't really know how to sort that out. And at the time, you know, they'll check your thyroid every year when when you have an endocrine disorder. But you know, as well as I do that your hormone levels can look normal on paper and not be normal for you. You know, the way it was with your wife and with your daughter, like, will it kill you to put them on a little bit of thyroid hormone? No, well, then maybe we should try that. Yeah, and hey, look, it works. And so sometimes I wonder if I had Hashimotos that flew under the radar for a while and now and then it came back, converted to graves, because that's what happened to my mother. Oh, okay, yeah, she she converted to graves right before she retired of El, six years ago, and had a had a radioactive iodine ablation. So

Scott Benner 15:21
you feel like, for you, there was so much going on, you didn't have more space to look into other things,

Jaime 15:28
right? And I never thought to, I didn't know they could do antibody tests and other things to look at that. They were just checking, you know, my t4 and my TSH, I gotcha, that's interesting, which really, by themselves, are not that reliable for anything, right, right.

Scott Benner 15:45
How about that? Okay, so I have a couple of questions here. So I'm looking at your notes. You left a very long note which is helpful weight issues through your life,

Jaime 15:56
yeah, not really, until I was in my 30s. But yes, it became very difficult for me to lose weight, you know, once I hit about 35 or so, and especially after I had my daughter, who is nine. Now, I've struggled with my weight a lot since then, and I always felt like I had to work abnormally hard to even lose like 10 pounds, and I really needed to lose like 30 or more,

Scott Benner 16:26
right? You think that was thyroid, or you think it's something else it

Jaime 16:30
could have been. And I still wonder if there, you know, like I said, if maybe I had Hashimotos, and that's why some of that was so hard for me. It just seemed really abnormally difficult that if I wanted to lose weight and keep it off, I had to exercise every single day, and I had to stick to a diet every single day. And that gets hard, yeah, to do when you have a small child, and then, you know, other stuff going on. Of course, I did finally manage to lose about 30 pounds in 2021 prior to that, I had been, you know, at pretty much the heaviest I'd ever been. I was carrying weight around my middle, which always makes me nervous about heart stuff, because that runs in my family too. Beginning of 2021 I was probably at the heaviest I had ever been in the 170s I'm only five foot three, and most importantly, I was carrying weight, or too much weight, around my middle, which made me worry about heart problems, because that does run in my family, okay? And you know, my cholesterol was tending to run higher, and, you know, then they start wanting to talk to you about statins and all these extra medications. And, you know, I had yo yo for a while. I think, you know, when my daughter was preschool age, I was running a lot and had managed to lose about 20 pounds. Then I went back to work and started slowly putting on weight again. So we come to 2020 when we have a pandemic, and I'm a nurse, and things are stressful and horrible and crazy, and my husband was starting to have some major medical issues, and so I put back on a lot of weight. So enter 2021 my cholesterol is high again. My endocrinologist starts talking about putting me on a statin. And I said, Well, my cholesterol is not that high, and I don't really want to take a statin, because historically, I haven't seen people in my family do very well on them. They made my mother very sick. No matter which one they've ever put her on, she's had some permanent effects from that, and so I wanted to avoid that at all costs. And she said, then, what do you want to do? Because you can't stay like this? And I said, I want to treat the root cause of the issue. I need to lose 40 pounds. So she sent me to a weight loss doctor and a nutritionist who was just the right nutritionist that you know you you and I both know that doctor patient relationships, and any healthcare practitioner patient relationship is not always a good fit, and you have to find the person who does it for you. And this lady was amazing, and she helped me figure out what my basal metabolic rate was and how I needed to feed my body, not somebody else's body, not stick to this diet on this paper that we give generically to 16,000 people, but how I needed to eat to lose weight and maintain weight. And he put me on phentermine, which wasn't my favorite thing, but that was when I started to realize maybe I should get treated for my ADHD, because the stimulant is really helping me focus. As soon as I went off the fender. Mean, I started to gain weight again, and we did a trial with ozempic at the time. In about August of 2021, my doctor's office was able to give me some samples, and it really helped my insulin sensitivity. I was taking a lot of insulin, and I was told that that probably. Wasn't doing me any favors helping me lose weight, either, because it likes to store itself in fat cells, and so I think we just had this whole storm of things going on that was making things very difficult, and suddenly I was less insulin resistant and was able to drop a little bit more weight without even trying. And that was about the time that I started doing more research on things like, why am I hungry all the time? Yeah, and I finally learned about amaline. No one had ever explained that to me in by then, the 30 plus years that I had been type one that the reason I wanted to eat constantly was not just because I have ADHD and binge eating is an issue because it is sometimes, but also because my islet cells don't work and I don't make insulin, but I also don't make Amylin. And Amylin is what keeps you feeling satiated and keeps food in your stomach longer, and that's why I could eat breakfast and five minutes later feel like I hadn't eaten since the day before, and dump all this food really quickly instead of digesting it properly. And then my blood sugar sky high, and it's it's just a cascading issue, and so I really feel strongly that GLP ones are helpful with that, yeah, because they kind of do the same thing that Amylin does, which is slow your digestion enough that you get your food and nutrients kind of the way you're supposed to, and then it helps you be less resistant to insulin, and things start working a little bit better. And I think we're just now, maybe at the time where there are a lot of studies going on with type ones, trying to get these medications approved, not only for type two, but also for type one. Now I think it's easier to get insurance to cover for type two things, because insurance will cover them for weight loss now, where even two years ago, when I was doing this, they didn't, yeah, because we go, V wasn't a thing just yet. And now there's a weight loss version of Mount Jaro as well. I'm using it, I know, yeah, so, so I'm now on tours appetite as well. Okay, so when we did this try, I should backtrack a little. I'm sorry I warned you about the ADHD thing. I'm going to drag you all over time and space. Can

Scott Benner 22:26
I tell you something? Jamie, I'm going to put you in the TARDIS. I'm always amazed, because people with ADHD are like, I know I'm all over the place. You're not all over the place. Okay, you might feel like you are, but you're telling a very linear story. You're fine. Okay, that's great.

Jaime 22:41
So we were trying ozempic In 2021 I was thrilled with it. I really wanted to stay on it. My insurance wouldn't cover it. And the doctor that I was with at the time, you know, and I find this, our medical system is terribly overwhelmed, especially the medical system in the state of New Mexico. Healthcare here is difficult because specialists do not stay here. They leave Okay, or they are so overwhelmed by their patient base, because we have a high type two diabetes population here, that they just don't have the time or the inclination or the staff motivation to go to bat for their patients about stuff like this and figure out how to get the insurance to cover it. And so I sadly had to go off of it, and I did really well maintaining my weight loss. I just didn't lose as much weight as I would have liked to, but I was happy with where I was, and I felt healthier, and I felt fit and I felt better. So that was fine with me. It was like, Okay, I don't need to be a particular clothing size. You know? What I need to do is not binge eat, not and not want to binge eat and and ozempic really helped with that too. Yeah, you know. But, but when I was off of it. It was an issue. And, you know, it made me think more and more about just getting my ADHD treated so I could get that under control, because ADHD and binge eating disorder tend to go hand in hand. And I saw, saw this in my dad as well. Isn't it

Scott Benner 24:16
fascinating that the picture you're painting, how it all just connects to each other

Jaime 24:20
well, and the crazy thing is, is that I didn't start putting this puzzle together until the last two years. So one of the things that didn't help my weight loss journey a whole lot was after I finished losing all this weight in 2021 my husband was diagnosed with a brain tumor.

Scott Benner 24:38
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Jaime 26:00
is different from regular cancer, because whether a tumor in your brain is benign or malignant, it's always brain cancer. Because brain tumors, they can start out as a low grade benign tumor, which is fortunately, what he has, but over time, nine times out of 10 that without treatment, they will keep growing. For one thing, because even though they're benign, they grow and then they will convert to something malignant later, either some anaplastic, fast growing form of what they are, or glioblastoma multi form, which is a quit killer. Yeah, that kind of segues to the stress level in my life. So before that, I met my husband in our anatomy and physiology class when we were doing pre reqs for nursing school, and he was about four and a half years post combat injury at that point, and we started talking because he just fascinated me, because I didn't know anything about him. He was in my lecture, and he was staring at me all the time, and I was in school, and I didn't want to date anybody, and I had, I had been divorced for a few years, and had also just gotten out of a relationship, and really wanted to focus on nursing school, and I wouldn't sit next to him because he was always staring at me.

Scott Benner 27:24
He thought this was kind of late to you, not concentrating in school, right? Yeah, or

Jaime 27:28
just like something else I really didn't need in my life at the time, you know, I was like, Listen, I'm trying to just be by myself here. Leave me alone and stop staring at me like that. I ended up having shoulder surgery and making up my lab, because my lab was on the day of my surgery, and I went to a lab on another day, and it happened to be his lab. We were doing anatomy of the skull that week, and I had seen in class that His arm was, his left arm was really messed up, like really messed up, and he had a huge scar along part of his hairline, and just the way he looked, with the tattoos and the side burns and the, you know, at the time, the Hot Rod shirts and stuff, I figured he had a motorcycle accident or something, and he was talking to the lab instructor. He's got this plastic skull. Huge piece of it is missing, and he's talking to the teacher about it, and I can kind of overhear part of the conversation and her turning it over in her hands and saying, and this is yours.

Unknown Speaker 28:31
And I thought I didn't

Jaime 28:33
even know somebody could live without that much of their skull, right? Literally, like half of it is missing, the entire right half. And so of course, he comes and sits down right next to me, which is what I was trying to avoid. But at that point, I was so curious that I just had to ask. And the first thing, the first verbal exchange between us, was me just turning to him and saying, I'm sorry if I'm being rude, but what the hell did you do to yourself? And

Scott Benner 28:59
he said, Oh, thank God, I finally got this girl to talk to me. Right? Probably, probably did. He would have led with that if he knew it was going to work that fast, right? Chicks dig

Jaime 29:10
scars, it's true, especially chicks who are going to be nurses and are fascinated by orthopedics. So he told me his story. He was a Marine. He did a tour in Iraq in 2005 and was almost to the end of his six month tour when he got thrown out the top of the Humvee. He was the turret gunner and landed very hard, yeah, and shattered his left elbow and fractured the right half of his skull so badly that it couldn't be saved. So he was immediately taken to Balad Air Base, where he was stabilized, I believe, by Air Force physicians, thanks to them and all of those Navy corpsmen who threw them on the hood of the Humvee and drove him right to a helicopter pad. They did an emergency. The decompression right there at blood. They didn't even take him to launch tool to stabilize him, because it was too emergent. They removed almost half of the right side of his skull because the brain swelling was so rapid, and then they flew him straight to Bethesda, Maryland, where they kept him in a medically induced coma for about two to three weeks, and then slowly brought him out of it. During that time, he had surgery to try to fix his left arm. His left arm is basically a limb salvage. He had median nerve severely damaged, and ulnar nerve pretty much severed, so he only has maybe 50% of the function in that hand, and that's all gross, no fine motor function at all. And his elbow is just kind of a solid chunk of bone, so it'll move a couple of inches, but it kind of just hangs there. He's missing all the muscle in the back of his arm, you know. And then there's that remarkable half his skull is missing. And fast forward four years, and this guy is sitting in an anatomy and physiology class getting ready to go to nursing school. Wow, fascinating. And I'm thinking, holy, and I thought I was a survivor, yeah, you know, because prior to that, I had, I've seen some shit. Well,

Scott Benner 31:16
you know, you've a couple of times alluded to having been through some traumatic things, but you haven't said what they are yet. I

Jaime 31:22
will get to that, because that all affects my diabetes care too. Of course, I'm thinking, how are you dysfunctional, you know, and the reality of it is, and any doctor who's ever seen him will tell you he's not supposed to be alive. Yeah, they told his mother he would probably never speak in complete sentences.

Scott Benner 31:44
Oh, geez. What did they do to make up for the part of the skull that he lost? He

Jaime 31:50
has a beautifully engineered plastic plate.

Scott Benner 31:54
Wow. They 3d printed him a skull. Yeah,

Jaime 31:58
they did. So that skull that he had when we first met, that he was showing to our anatomy teacher was a 3d print out of his skull. They did us. He was one of the first people to get a plate of this, a custom made plate of that type. Yeah, it was a military thing. And his brain surgeon a couple years ago, saved that plate and put it back because he said we could never give him one that nice. That's, that's definitely a military grade thing, gotcha. They did a series of CT scans, I think he said it was probably over 100 different scans, different angles, you know, basically to be able to build that 3d model of his skull on a computer. And this was the early 2000s that was some huge technology at that time, right, and were able to basically print out his skull in 3d and then make a plate that fit his craniectomy as closely as they possibly could. So there are some cosmetic issues like, you know, around his cheek bone. There's kind of an over build of bone. He didn't have a plate there until about nine months post injury, because they had to let all the swelling go down. And then, because the military is the military, it got sent to Bethesda, thinking he was going to have the surgery done there to put it in. But by then, he was already in California at the new brain treatment center at the Palo Alto VA, and then they sent him back to camp Pendleton, and they couldn't find his plate. So he should have had the surgery maybe five or six months after his injury, but it was nine months because they had to find the plate, and it was on a dusty shelf somewhere in Bethesda. And then they sent it to California. I bet you,

Scott Benner 33:39
while that was all happening. He never thought this is going to get

Jaime 33:41
me late eventually. No, he probably did not think that at

Scott Benner 33:45
all. But there we are. That's crazy, yeah, insane like and that did it drew you to him. Is so interesting. How long ago was that?

Jaime 33:54
That was in June of 2010 so we have now been together almost 14 years. I told him we could study together, but it was not a date. I was very insistent about this, Jamie, okay? And I'm sure he thought I was hilarious. He finally, I think a month later, I finally was like, You know what? I was waiting for the other shoe to drop. So I left a pretty mentally abusive marriage in 2007 I'm sorry. And so for me, it was always like, He's too nice. He's too nice. This is love bombing. He's too nice, because I know about this now. And so I just hung back and waited for the other shoe to drop. Oh, that makes more sense. Okay,

Scott Benner 34:39
I get you. Yeah, you know, he

Jaime 34:41
was like, walk straight out of the 1950s holding doors, and it's 1030 I better get you home. And I'm like, Who the hell is this guy? What's wrong with you? So nice. Lull

Scott Benner 34:51
you into a feeling of complete comfort, and then, you know, take you out in the woods or something like that. Yeah, or

Jaime 34:58
just be terrible. Turn out. Be a complete a hole, like my ex husband, you know? And so I just kind of hung back and waited, and then I think I finally reached a point where I was like, I might be stupid if I don't go out with this guy.

Scott Benner 35:13
Seems like it's very consistent for such a long time. Yeah, yeah.

Jaime 35:17
So, you know, almost 14 years later, here we are, and he's still just an absolute sweetheart. Hey,

Scott Benner 35:25
does his tumor have anything to do with his injury?

Jaime 35:29
I don't think it has anything to do with his injury, but I do. I do firmly believe that it has something to do with things he was exposed to while he was overseas. Gotcha? Um, it's, it's actually very common. Oh, oh, I see, for people who were exposed to jet fuel and burn pits and god knows what else over there to have brain tumors. I he's not. He is not the only one I see. He's just lucky that it wasn't glioblastoma, which happens, that's what they see a lot of.

Scott Benner 35:57
I think we might call this episode other shoe, by the way, okay, I think that sounds good. I mean, something might happen,

Jaime 36:03
and there are a lot of other shoes. It's not just about relationships, it's about all these traumas that, you know, I've mentioned. So there was that, and like, relationship wise, we've had a wonderful life together, you know, we we both got through nursing school, okay? You know, he started having partial seizures and had a couple of grand mals several months after his injury. Okay, so, you know, there's a lot of scar tissue in his brain. He has a lot of what's called encephalo Malaysia, which is brain tissue that has kind of just shrunk back and atrophied in the right half of his brain. You know, it's pretty obvious on on scans that, you know, there's some deficit there, but it never really caused him any more than just like some memory stuff now and then, which I think all of us have. So it wasn't really a whole lot different than than you and me when it came down to it, and he didn't have any frontal lobe damage or anything. So it didn't really affect, you know, like, violent or super impulsive, or, you know, anything like that. And there was a point I want to say. When it was, it was around 2015 or 2016 our daughter was born in December of 2014 so, yeah, this would have been 2016 because she was about to that his seizure started to change. He was on seizure medication, and always had been. And so his seizures were never more than what's called simple partial where he would just kind of, you know, smack his lips a little bit, but he would be conscious the whole time and even able to respond to you, you know, probably could have even driven, you know, because he knew what was happening and didn't have any memory loss or anything. And he went from that to complex partial, which is more he's really checking out, and then for a few minutes afterward, he doesn't remember the seizure. He is completely checked out while it's happening. And I watched this happen over a period of about six weeks, and I was like, something's going on. This is different. This isn't the same as it's always been. And it's really sudden. What

Scott Benner 38:16
was the frequency of them before the change? Oh, gosh,

Jaime 38:20
not very often, once every few months. And they were always like in the evening, you know. So he was allowed to drive, and he did fine, you know. There were never any issues. And then one day during that six week period, he was on his way home from work, and he hit two parked cars and had no memory of it, and I hear the doorbell ring, and I'm thinking, God, he's really late from work, and there's four cops in my driveway telling me that he left the scene of an accident and he could possibly be arrested. And I'm like, Oh, my God, I think I know what happened. The officer who came to the door was a DUI officer. They called him because they thought my husband was impaired. He's been sober since he was 24 years old. He's not impaired. And he said, Well, that's obvious to me, so I'm trying to understand what happened here and why he can't remember this. And I said, you know, I explained what happened. I said he had a seizure. And he said, like, you know, a grand mal seizure. And I said, No, he probably had a complex partial seizure. There are about six or seven different kinds of seizures you can have, but he has been having more of them, and they've mostly been at night, you know, and we're waiting to see his neurologist at the VA. He's 100% service connected disability, so all of his care is through the VA, especially for the brain injury. He did not get arrested.

Scott Benner 39:43
Yeah, it sounds like the cop was on the right track right away.

Jaime 39:46
He was the other one. That was wisdom, wasn't but he's inconsequential. He didn't even want to come to the door and talk to me, you know, and I have a sister who's a cop and a brother who's a retired law enforcement. Uh, you know. So for me to be like, Dude, you're part of the problem, you don't say that either. Yeah, we did see his neurologist, and at the time, nursing was like a second career for me. So I didn't graduate from nursing school until I was 33 I had my daughter when I was 35 and I stayed home with her and finished my bachelor's in nursing before I went back to work in 2018 so at this time, I was still a fairly new nurse, and I wasn't real good at arguing with people, yet really good at that now, like, try me now and you'll be sorry you ever said no to me. But back then, you know, she explained to us that he does have a severe brain injury, and that the tissue will atrophy over time, and that the seizures and other issues are likely to get worse because he's also at a pretty high risk for dementia. And I said that being said, if we're talking about how his brain is going to change physically over time. At that point, we had been together seven years, and he had never had a brain MRI. I remember him having a CT scan because he went to the emergency room one day because he didn't feel right. But that's it, yeah, and I thought this guy has a brain injury of such magnitude that people who call us on the phone from the VA who have read his file and never met him before asked to speak to his caregiver.

Unknown Speaker 41:31
Oh, how about that?

Jaime 41:32
And he's not having regular MRIs,

Scott Benner 41:36
maybe we should pay closer attention. Yeah. So

Jaime 41:40
don't you think, with the likelihood of these changes happening, that he should be having an MRI once a year to monitor this? And she said, No, I don't think we need to do that right now. We'll just switch up his meds a little bit and see where we're at in six months.

Scott Benner 41:55
Thank you. Great help.

Jaime 41:58
And anybody out there listening who deals with the VA knows that that means I don't feel like doing this, so we're not going to do it. And, oh well, it's

Scott Benner 42:09
never happening, just so you know,

Jaime 42:10
and it's never going to happen. Yeah, right. So if I had been the nurse then that I am now, I would have said, how about I did all my internships here, and I know your system, and I know how easy it is to check a box and order that test. So how about nobody's leaving this room until it happens, because he's missing half his skull for your freedom or whatever, yeah, and he's 100% service connected. So how about we just do that? But I didn't, because I stupidly thought, well, we'll come back in six months, and if this is still an issue, then we need to do something. I see, and I really wish that I had pushed for it harder, because he had the tumor. Then,

Scott Benner 42:47
okay, yeah, how long was that before you actually found out about the tumor?

Jaime 42:52
We found out about the tumor in 2021 so it was four years, four or five years

Scott Benner 42:58
you carry guilt about that.

Jaime 43:00
Me, you know, but his doctor should, yeah,

Scott Benner 43:03
no, for sure. I just heard you say, I wish I would have pushed harder. And I was just wondering how you

Jaime 43:07
felt. Oh, I mean, I wish I had, I regret that, but it's not my responsibility to order that test. No, of course not. As a neurologist, you would think that they would have wanted to see that, but I guess not. I'm a little sore with the VA in general, a because of this and B, because that type of negligence also killed my father,

Scott Benner 43:29
yeah, so it hits harder.

Jaime 43:31
But how did you it'll be two it'll be two years tomorrow. So that's kind of fresh. Yeah, we he did pretty well with the med changes, and he was even able to go back to driving for a while, and things went really well for a long time. And so he never got an MRI. And then in 2020 right after I got furloughed from my job, he had a grand mal seizure on our bathroom floor when I hadn't seen one of those in seven years. And he went into Status Epilepticus, which is a seizure that doesn't stop, and if it doesn't stop, you will die. And I thought he was going to die right there on our bathroom floor. Oh gosh, part of my job is airway management, so I was able to do that while I called 911 our five year old daughter was out on the couch while this was going on in the bathroom, and I had to call 911 i i waited, you know, not too long, but, you know, because I knew how to handle it, I didn't call 911 right away, because when it stops, it stops, and you really don't need that. But it went on, and then I thought it was stopping, and then it would just cycle right back in again. And at the time that I saw it start to happen, I was like, Okay, it's over now, it's over now, it's over now. And he started kind of going postictal, and then it started again. And I thought I'm calling 911, so it took an ungodly amount of benzodiazepine. Seen to stop that seizure more than I've ever seen a patient get in one sitting, certainly more than they ever get for anesthesia, I'm a post anesthesia nurse, and a CT scan was done at the hospital to make sure that he didn't have a brain bleed, but there was no MRI. And I'm like people, they'll get away with the cheapest thing first. That's just how medicine works. But I knew something was wrong at that point, and there was a different neurologist assigned to him at the VA at that point. So we saw him, and he didn't like that that had happened. And you know, he wanted to do some med changes too. But again, nobody talked about an MRI or anything, but we were in close touch with him, and he seemed to be much more concerned about my husband than the previous neurologist had been, and so over the next few months, he ended up having another grand mal seizure. Three months later, we tried a different medication, and that was an absolute nightmare. He started going into these like, two hour long Alzheimer's episodes, like, literally, like somebody with severe Alzheimer's disease had no idea where he was, what he was doing. He started throwing things at us, like, just, I don't know what he was seeing. He doesn't have any memory of it, you know? And I really think that that's the brain tumor, okay, that was causing this. But we obviously took him off the medication immediately, because this started happening within days, and he went right back on the Keppra, you know, we continued to just keep in touch with the doctor, and he had told us at that point. He said, I am a general neurologist. I am not a seizure specialist, and I need you to see somebody who can help you the way you need to be helped. Hallelujah, finally, somebody who thinks that he needs more than he's getting, and he said, we're going to be getting one after the new year. There is a doctor who's coming here from North Carolina, from a university where they do a lot of of seizure and brain stimulator research, and she's going to come see patients here once a week, and I want to get you in with her as soon as possible. And he said, if things keep trending downward, then I'm going to get community care to let you to see her at the University of New Mexico. But if we can hold off until she's here at the VA it will be better. So things got better. Settled down. He was seizure free for six months. He was driving January of 2021, out of the blue, has a seizure while he's driving with our daughter in the back seat, and totaled our Subaru. And at that point, I said, you're never driving again. We're done now. And he said the same thing because he was so overwrought by what could have happened. Luckily, he just clipped a truck. It totaled our Subaru, but it did its job. It kept everybody safe. No one else was hurt, yeah, and that's a sensitive spot for me, because one of my traumas is being hit by a drunk driver on the interstate and losing one of my best friends, and so I never want anybody close to me to be the cause of something like that. You know,

Scott Benner 48:10
you were hit as a younger person, and you lost a friend in that accident. Were you driving? Oh, geez, yeah. Well, yeah, get a maneuver like gift card or something,

Jaime 48:21
right? Yeah, yeah, no, he, he hasn't. He doesn't drive anymore. He still doesn't. I don't think at this point he may ever be able to drive again. He stopped driving, and we called the doctor, and the doctor said the epileptologist starts seeing patients at the VA in two weeks. Here's her nurse's number, call yesterday and get an appointment. So he was one of the first patients to see her, and she was just this absolutely wonderful Chinese lady who had gone through cancer herself, and she had a heavy accent. So it made it even funnier when she got angry because she said, When was your last brain MRI, and I said, we've been together 11 years, and he's never had one, right? And she got so upset, I would imagine she she almost started yelling. She said, What do you mean? You've never had a brain MRI, why not? And I said, I've been asking the same question for 11 years, and no one has been able to tell me why they won't just order one. And she said, Well, you're having one now. And she ordered an MRI. He had one about a week later. And we came back for a follow up visit, and she said, There's something concerning here. She said, you have this nine centimeter something in your right frontal lobe. And the radiologist in the report had said, you know, it could be a tumor. It could be scar tissue build up, or what's called gliosis. Gliomas are brain cells. I thought

Scott Benner 49:54
that was something you got when you watch Glee too much. I was like, Oh, right.

Jaime 49:59
So GL. This is like a thick scarring of brain tissue and brain cells, and it tends to form lumps in the brain, and it can act like a brain tumor. It can cause seizures and stuff, but usually, if they're able to resect it, you go back to normal. And she said, I really think that it's probably just scar tissue, but we need to know, so we need to do a special type of MRI with a special metabolite that will tell us if this is tumor tissue or not. And she said, we have to coordinate that with the university, because they don't have the capability of doing it here at the VA. So we need to get you in with community care and start, you know, and she wanted him to stay on an epilepsy monitoring unit. She said, We need to figure out where your seizures are coming from in your brain, so that you know if we can do a resection surgery of some of this scar tissue and stop this from happening, or implant a stimulator that will stop the seizures before they start, you know, and this is what we were on track for. So he did go and stay on the Epilepsy Monitoring Unit. They did get the information they needed, and this was in July. So it took a long time he had the first MRI in March of 2021, and it took until July for the VA to coordinate with the university and get that MRI set up correctly, which is absolutely ridiculous, but we were also in the middle of a pandemic, and things were backed up to kingdom come, as it was. So he had this MRI. We went for an appointment to follow up on the results from his stay on the unit, as well as the MRI, and she said, I thought we were going to be having a different conversation today, but I'm very sorry to have to tell you that this is a tumor that's terrible. Two days later, boy, you say brain tumor, and then they move fast. That gets people moving, does it finally? And I feel like maybe they kind of knew it was their fault too, right? So two days later, we were at the university, and all his care was switched to the University of New Mexico, and we were sitting in an office with a neurosurgeon from Monday to Wednesday, and he spent an hour and a half with us. It was a team of two pediatric neurosurgeons, and he spent an hour and a half with us talking about the biopsy that was going to happen very soon. And then as soon as the pathology came back, probably a tumor resection. And he said that the one thing that made us lucky is that it was in his right frontal lobe. He said, we call that the neurosurgeons gift from God, because you can take the entire thing out with virtually no permanent effect on the patient, because the left frontal lobe will take over. He said, if it was in the left that's that we'd be having a very different conversation.

Scott Benner 52:46
That's amazing, isn't it, that the brain can do that? Yeah, well, so,

Jaime 52:50
but the left frontal lobe is so functional compared to the right,

Scott Benner 52:55
well, then that's, that's what you focus on. Then right,

Jaime 52:57
the tumor pretty much took up his entire right frontal lobe a little bit in the right temporal lobe. By the time they found it, it was nine centimeters, and it had grown into the corpus callosum in the middle of his brain, which they cannot touch. They will disconnect the two halves of your brain and destroy you. And so that small part of the tumor was left. He had a biopsy just a couple weeks later, I think we we were supposed to go visit my family in New Jersey for the first time in 25 years. And we did. They told us to go ahead and do that, because stuff was going to get hard and we needed to go have a good vacation. So we did. My mother is from from New Jersey, and my I still have family there. We came back, he had his biopsy a few days after we came back, and he had a grade two, which is a low grade or benign grade one and two are usually considered benign oligodendroglioma, so that type of tumor affects the oligodendrites, which are the cells that insulate your neurons and prevent unwanted electrical activity in the brain. So one of the most common signs of an oligodendroglioma is seizures. So that's why his seizures had gotten so much worse and so uncontrollable I see. So he had a resection in October of that year, and I was still maintaining my weight loss pretty well, and that was after I tried ozempic and really liked it. So this is all kind of happening on the same timeline. We had both been working really hard to lose weight since the beginning of of 2021, and we were in a good place at that point. And I'm really glad he was so physically healthy when all this happened, and that he had managed to lose, you know, I think about 100 pounds at that point, since we had gotten married. What

Scott Benner 54:44
did he do for that? Well, he

Jaime 54:47
just ate right and exercise. Scott,

Scott Benner 54:51
well, it works for some people, and it usually

Jaime 54:54
works for men better than women. Yeah, that all went very well. And then he started Radio. In December, and he weathered radiation really well. He had 28 treatments between mid December and the end of January of 2022 and eight days after he finished radiation, my father died very sudden, suddenly,

Scott Benner 55:15
sorry, oh, Jamie, I'm sorry. No, I've heard you almost cry four times so far today. So it's fine. Out of the blue.

That really sucked, though, yeah, oh, I bet he

Jaime 55:27
didn't have high cholesterol. He died of a massive heart attack because he had a blood clot in one of his cardiac arteries. As it turned out, we had no idea how to congenital malformation that made his left circumflex artery, his primary circulation where it's usually your right cardiac artery. Somehow, we don't even really know why, a huge blood clot formed in that artery, and he lost the entire bottom half of his heart, and it was pretty bad. And when they reperfused and got the clot out, and his blood pressure rose, it blew out his ventricular septum, and there was just no surviving. So yeah, it's hard being a medical professional, and at the time my older sister had my older sister also worked in surgery and did open hearts for about 13 years, and my husband's aunt is a retired cardiothoracic surgeon, and so it's tough to know things sometimes, because when this started happening, you have just an overwhelming feeling that you're about to be hit by a train, because you know too much, and we didn't even know how bad It was. And once we saw the medical records, there was just no way that he was going to survive that unless his doctor at the VA, a month before, had listened to him about the back and shoulder and arm pain that he was having and sent him for a cardiac workup. So I have a bone to pick with the VA. I imagine, at any rate, that was hard. My parents met here in Albuquerque, New Mexico, and they were living at the time in El Paso Texas. My mother is still there. My older sister's husband had passed away when I was pregnant with my daughter, and they have a plot at the cemetery near my house, and my parents bought the plot next to theirs, and had made pre made all of their funeral arrangements. And so they had expected to be living with us up here when they died, and I had to figure out in 24 hours how to transport a body over state lines. And I basically had, you know, I took charge of the funeral because I live here, and I could plan the mass and deal with the funeral home and everything. So that's a lot of stress when your husband just finished radiation for a brain tumor, and I started binge eating to cope with my grief and stress. Over the course of 2022 I put back on even more weight than I had lost, and by the end of the year, I was completely miserable with myself, you know. And everybody kept saying, give yourself grace. Look at the year you've had. But that's just one more disappointment, you know, in a whole string of them. So about two weeks after the funeral, my husband started chemo. He did pretty well with it at first, but it started affecting his bone marrow pretty badly, and we ended up having to stop at four out of six cycles, because he was going to end up needing a bone marrow transplant if we didn't.

Scott Benner 58:29
Yeah, did he have all that bone pain too? Afterwards?

Jaime 58:32
They did have to put him on some stimulators, but he did pretty well. This guy is Chuck Norris, I'm telling you. Sounds like it. He beats his way through life. I mean, there is no other explanation for how he could a recover from a brain injury of that magnitude the way he did, and become a successful registered nurse. Passes NCLEX the first time he took it. I mean, normal people can't do that. And, you know, and then do this too, like he's freaking amazing. Yeah, I married Chuck Norris. There's just, you know, so, you know, it's just, there was a lot going on, and that was in 20 March of 2022, that my daughter, who was seven at the time, finally convinced me to sign her up for Irish dancing lessons. And I was just in the frame of mind. I was in that YOLO frame of mind because my father had just died, my husband had, you know, a 12 to 15 year prognosis. And it was like, You know what? Sure, let's do it. And while we're at it, let's put the down payment on this educational trip to Canada to see the northern lights that we've been wanting to do for four or five years now too. So we did both, yeah, because you'll be done with cancer treatment by

Scott Benner 59:45
then, Jamie, that's the thing, right? Like you, everyone plans for a really long life, and then suddenly, when you have that feeling of finite, and then your father passes, so it really kind of, yeah, digs it in, you start thinking, well, let's, like, live right now. Yeah. That

Jaime 1:00:00
was like, the fifth time, because, you know, I went into asystole twice when I was in DKA At age 11.

Scott Benner 1:00:06
Yeah. No, you've had plenty of chances to come to Jesus, a heavy

Jaime 1:00:10
thing to be faced with at 11. I don't think I really completely understood that until I was, like, in my 20s, yeah, but it happened I momentarily died. And then, you know, the I mentioned the drunk driver, I was hit on St Patrick's Day in 2002 Yeah, I was driving my friend and his brother home to Deming, New Mexico, which was about 75 miles away from El Paso, where I was living at the time, and my ex husband and I were together at that time. We were all in the vehicle together, and a drunk driver hit me, and we rolled six times off the interstate.

Unknown Speaker 1:00:44
And no,

Scott Benner 1:00:45
yeah, my over in a car once, but I didn't roll.

Jaime 1:00:48
Yeah, I was conscious the entire time, and that's not something you want to remember very well, but I do yeah. So you know, that was the first time I had to rebuild my life. I had just turned 23 and I lost my medical insurance and my endocrinology care and diabetes was real hard for a few years after,

Scott Benner 1:01:07
yeah, yeah, no kidding. I want to ask you about that a little bit, but I want to share something with you that you don't know happened while we've been talking. Okay, so you kind of offhandedly brought up this thing at Tulane University about, I can never say it right? Ears. Dan los, how do you say? Yeah, errors, Dan Ehlers,

Jaime 1:01:25
Dan los, Dan

Scott Benner 1:01:27
los syndrome, okay,

Jaime 1:01:28
eds, it's okay,

Scott Benner 1:01:30
okay. I thought that meant erectile dysfunction, so I wasn't sure. I don't

Jaime 1:01:34
know that's just Ed, you have to add the x on the end, otherwise, something different.

Scott Benner 1:01:39
So Ed, right? And I googled it because, and I've said this in the podcast a couple of times, but it's just so interesting how you can, kind of like, start putting puzzle pieces together. I saw some people on Reddit one time saying that their EDS symptoms were getting much better on GLP medications. And it just stuck with me, like, I was like, That's interesting, like,

Jaime 1:01:59
I have not seen now, I'm gonna have to do some research well,

Scott Benner 1:02:02
and I was gonna ask you about it, but I just, I never got around to asking. Plus, you're, you're a dedicated storyteller, so I don't want to cut you off, right? So I am. So I Google that, and as I my eyes run over it, I see at the bottom, oh, how do you how are they looking at treating this? And that starts talking about what they call the motherf gene, the mth fr gene, right? Which means you can't process folate correctly. And I was like, oh. And then, you know the article, like, I'm again, I'm just skimming. The good news is treatment already exists methylated folate. And I was like, I was looking into methylated vitamins for my kids recently, that's interesting, right? So I google one more time, because you said something about digestive issues, and I have some digestive issues, and my son does. And so I just Googled EDS and stomach issues, and it got me to a gastroparesis,

Jaime 1:02:58
is a common diagnosis with Ehlers Danlos. I myself do not have Ehlers Danlos. At least I don't have a diagnosis with it. And I don't, yeah,

Scott Benner 1:03:08
you just said you're a little extra stretchy, yeah. And so I'm a little stretchy,

Jaime 1:03:12
and it causes me some problems, but the people I know with Ehlers Danlos have a lot more problems.

Scott Benner 1:03:16
No, no, yeah. And I'm not saying you have it. I'm saying this to got my mind moving so I found an EDS support Web page in the UK about gastrointestinal problems and EDS and I'm like And by the way, constipation, heartburn and reflux. I have reflux delayed gastric emptying or dumping, right? And my digestion has been much better since I've been on the GLP medication. Now my doctor describes it's because of the slowing down of Hold on. Let me find this email. I'm gonna roll this all together for you. You're gonna be pretty impressed what I was doing while you were talking, hold on, a second, and I was listening to you, which is pretty impressive too.

Jaime 1:03:59
But this is how I operate, because I have ADHD, so I totally understand this. I understand what you're doing right now.

Scott Benner 1:04:06
Yeah, the most likely reason this is for my doctor, for the urge to have a bowel movement immediately after eating is due to something called gastro Oli, the gastrolic reflex, because the GLP drug is decreasing how quickly your food moves through the intestines, the reflex has no chance to have an effect while you take a GLP medication. So why does my digestion seem to get better on a GLP she says this. So now I'm like, I'm texting these links to Jenny, because Jenny and I have been talking about methylated vitamins, like privately and stuff like that. And I was like, Hey, look at this thing here, about the EDS the Tulane study. And she's like, well, look at that. And then we started talking. Then I sent her the other things, and she's like, I have a lot of thoughts about digestive conditions relative to this. And I was like, All right, so I know that means we'll talk about

Jaime 1:04:55
it later. Sweet, we're gonna get an episode out of this. I know you're definitely getting an episode out. This

Scott Benner 1:05:00
also, I ordered the methylated vitamins and nobody and I, and I just sat on them. So I am gonna, like, go downstairs after this, and I'm gonna look at my son and go, hey, guess what? You're taking these for two months, right? I'm

Jaime 1:05:12
gonna start taking methylated folate, like, tomorrow. I

Scott Benner 1:05:15
mean, I was like, get the hell out of here. Now you can get a genetic test for it, but it's not a vitamin that's dangerous to you, so I figured, take it right. See what happens.

Jaime 1:05:24
Folate is good for you. You should have enough folate in your diet, right? And most people don't. So anyway, not a bad thing. All

Scott Benner 1:05:31
that is coming because of a couple of things you said. And I really appreciate that,

Jaime 1:05:36
just because I mentioned something, yeah, and my brain was like, we've been thinking about the kind of puzzle pieces that I started putting together. And it's funny, because I, like I said, I work in orthopedic surgery, so I know all the best doctors, of course, because I work with them. And our group is a wonderful Orthopedic Group, and I have this hand surgeon who's just a really awesome person. You know, he's done a few surgeries on me because I've had some ongoing issues with my hands over the last few years, and, you know, ruptured a ligament because of, probably because of hypermobility. And one time, I jokingly sent him a cartoon, and I said, you should start conversations with your new patients this way. And it was like, you know how to start, start a conversation with someone new by asking an open ended question, and the one duck is asking the other duck What the hell is wrong with you. And so that became this huge thing. I would come to see him at the clinic, and he'd say, What the hell is wrong with you, what the hell is wrong with you today. And every time I come see him, what the hell is wrong with you now. And so when I started putting all these crazy puzzle pieces together about the ADHD and the hypermobility and the diabetes and the how it all lumps together, and I came to him and I said, Dr Steve, I think I finally figured out what the hell is wrong with me. Yeah, and it's amazing, like just all of a sudden, things just start, click, click, click, click, click, and it's like dominoes. And here we are. Like so many things are a direct result of these one or two things that I've had my whole life and just really had no idea how much they were affecting me. Yeah. Well,

Scott Benner 1:07:14
hey, listen, listen to this within the human body. Methylation plays a role in DNA expression, embryo development, cellular energy production, neurotransmitter synthesis, hormone production and metabolism, inflammation and immune response. Conversions of the amino acid called homeosistine into other amino acids called I don't know. This helps keep cholesterol levels balanced and reduce the risk for cardiovascular problems. It helps with conversion of import nutrients from one's diet into vitamins, minerals, antioxidants, which, by the way, I have trouble absorbing some nutrients. I

Jaime 1:07:50
do too. I don't absorb vitamin D. I have to go out in the sun either. Do a lot of us, I know, and I loved that episode where Jenny was talking about that. I was like, Thank God someone's talking about this because they years ago, my endocrinologist thought I had celiac disease because I had hyper hypovitaminosis D for like, 10 years. I think maybe 2020, 2021, was the first time my vitamin D levels were finally at an acceptable level, okay, because I had to start taking it. I take sublingual vitamin d3 that is in sunflower oil. Okay, so because it's a fat soluble vitamin, and it was actually my hand doctor who told me that he said, take it with fat. If you have a problem absorbing it, it's likely that you may have an easier time absorbing it if you take it with a fatty meal or with something fatty when you take it. And so I started doing that, and then, lo and behold, my vitamin D level was high enough. I also started spending a ton of time outside, riding a bike and hiking. And, you know, I enjoy those things anyway, but we were in like, hyper drive during the pandemic, because there was nothing else to do, right, right?

Scott Benner 1:09:02
Listen, this methylation thing is going to, like, fall into the category of bro science for some people, but the Tulane study and then the EDS support talking about it made me feel like I'm just going to leap over the whole bro science thing here and keep going, like, looking into this, because well,

Jaime 1:09:18
and it's not, I mean, this is how big things get started, and this is how we find things out, you know. And I really feel like GLP ones. There are a lot of off label uses for GLP ones. They can also reverse liver damage. You're

Scott Benner 1:09:34
seeing people getting pregnant all over the place, on them too. They haven't been able to get pregnant their whole lives. So, yeah, there's, I mean, hormonal stuff.

Jaime 1:09:42
I have, I know somebody who struggled with infertility and accidentally got pregnant twice on a GLP, one accidentally

Scott Benner 1:09:50
twice. That's nice. There's the other shoe dropping when they took their pants. Just,

Jaime 1:09:54
you know, really unplanned, I guess I should say, not accidentally. It's not an. Accident. You didn't fall.

Scott Benner 1:10:01
You stepped on my best joke of this whole conversation. I'm sorry. I'm gonna do it one more time. There's the other shoe dropping when they took their pants off, there you go. That's what I got.

Jaime 1:10:11
Boom, and it hit the floor. Okay,

Scott Benner 1:10:13
thank you. I was like, damn it. Now, ADHD is messing up my humor.

Jaime 1:10:18
I'm sorry. Actually, it's I have a knack for that. It's my scientific speciality, ruining the joke, because I can be so literal sometimes. ADHD, you know, it's a form of neuro divergence and normal, weird sometimes. Well,

Scott Benner 1:10:35
yeah, hey, by the way, don't start Googling methylation and bipolar.

So, no, yeah, I

Jaime 1:10:41
don't need to go down that rabbit hole. Yeah. So,

Scott Benner 1:10:43
like, there's, I'm telling you, there's something going on. I'm gonna tell you a secret. I bought the vitamins and I sent them to Jenny too. I was like, here, you take these

Jaime 1:10:51
two. Okay, cool. I probably appreciate not having to do that herself. I

Scott Benner 1:10:56
was like, give it a shot. We'll talk about on the podcast. And she's like, all right, but, but, Jamie, I'm so sorry. Like, I have to button up to get on another call soon. So I want to, like, make sure we hit all the points that you meant to. And at some point in this conversation, I didn't think it was right to stop you from talking about your husband, because it felt very therapeutic for you, but I would,

Jaime 1:11:15
it's just it's been a big stressor in my life, too, and all of these things don't really help control your diabetes very well, yeah, and so that's kind of where all of that segues into, is that, you know, dealing with multiple situations like this in your lifetime. You know, a stressful divorce from a not great person, losing my medical insurance and therefore good diabetes care, when you know, a drunk driver hit me through no fault of my own, and I lost my job anyway, because I worked in an at will state, you know, my a, 1c probably those first few years after that car wreck, I floated. And I'm still so thankful for this person, and I wish I remembered their name. I floated on free insulin pump supplies that a Medtronic rep was sending me because I could not afford them, and I had been on an insulin pump since 1995 and I didn't know what to do without one very nice Medtronic. Yeah, you know, and they do have all I feel like most of the pump companies have a program like that where people can donate supplies that they no longer use, and I have sent them back supplies when I switch to something else or whatever, because I know full well how helpful that was for me, you know. But my a 1c was like between 10 and 13 for those years, and then when I finished graduate school, I got a master's in public health in 2006 and I moved back up here to the Albuquerque area, was when I started seeing, and I do feel the need to mention this person's name, Dr Robert Ferraro. He runs a diabetes program up in Artesia now that deals with multiple community communities. He left to Albuquerque to do that after, I think I had been with him about 12 years. At that point, best endocrinologist I ever had. He was like my dad. I used to call him my diabetes dad. You know, he got me through my pregnancy. He got my a 1c under control. He handed off his practice to a younger endocrinologist who was lovely to work with. And then my insurance quit working with her, and now I'm with a concierge provider, because that's just who is able to pay enough attention to me for the type of diabetic that I am, because I'm not a typical diabetic patient at all. My podiatrist still pokes my feet and is like, Are you sure you don't have any nerve damage after 33 years? Hey, listen,

Scott Benner 1:13:33
we use the concierge agenda, you know, for Arden and just

Jaime 1:13:38
became necessary. I worked with a nurse practitioner student at my surgery center who was doing clinicals with her, and suggested that maybe I would want to think about it if I could afford to do it. And, you know, make a payment plan. And I haven't been sorry. I actually know somebody in the group who has, you know, seen her as well. And, you know, I'm not sure how that relationship is working out. But for me, that's what I needed. She knew how to get my insurance to cover the GLP one. She basically diagnosed me as a type one slash type two because I have the insulin resistance of a type two. And type two runs in my family, so it's like a double edged sword there. And we know that's a thing. We're

Scott Benner 1:14:17
very lucky that our insurance actually we can pay the concierge and then turn it in, and we're, I think we get covered like 90% so it's really, actually very like, Oh, that's awesome. That's not common, yeah. And then the other thing is,

Jaime 1:14:32
I can deduct it from my taxes, though, has a medical expense. Well, I'll

Scott Benner 1:14:36
deduct the other 10% if I can. But the other thing I wanted to mention, and I because I've been bringing it up more in the podcast, I'm going to talk more about I'm going to talk more about it through 2024 and moving forward, because I'm starting to have more people on who are type one using GLP medications, off, you know, off label, and often having to pay cash for it. But the insulin reduction is insane, and so much so that we're doing it with Arden. She's. Been doing it for about two months. Now she's only shooting a quarter of a milligram of ozempic a week, and her insulin needs have dropped so far that I believe she's going to use like 12,000 or more, or over 12,000 fewer units of insulin in the next year. So

Jaime 1:15:16
yeah, and that was the one thing, even just on the point two, five dose that I noticed immediately was that my insulin sensitivity, yeah, it was crazy. It skyrocketed. So I was on ozempic From February, and I started out getting it at a compounding pharmacy. I had it prescribed to me for weight loss because that was getting it compounded was the only way I could afford it. But when I started seeing this new doctor, she said, No, we're going to get your insurance to cover this, and this is what we're going to do, and that's what we did. So I was on ozempic Till, I think, August of 2023, and then I was on one milligram a day. By then, doing pretty well with it. The one thing that it did to me was really increase my gag reflex, and I didn't love that, because when I would brush my teeth,

Scott Benner 1:16:00
yeah, you got to get past the first, the first, like, three or months or so, like, I might,

Jaime 1:16:05
this was like nine months in my food. Yeah,

Scott Benner 1:16:09
that's terrible, although a lot of those side effects people say are don't exist with manjarna, or does that bounce?

Jaime 1:16:15
Maybe they don't. For me, I know that it's not. I mean, no two medications, you know, nothing affects everybody exactly the same, and some people have really severe side effects with ozempic. And I never the worst thing was the gag reflex thing, and it made me really, really tired. And the the fatigue was pretty bad throughout, but I managed to learn how to time my dose so that the worst of it was over like I would take it at night after I was done with my Irish dance class on Tuesday night, so that I wouldn't just want to sleep before class and have no energy to get through class because that stuff is hard.

Scott Benner 1:16:52
I plateaued on ozempic, and I did too, and then I started the zeppbound, and I've only been using it now for maybe six or so weeks. But I plateaued on ozempic at like, 196 and I'm 188 now.

Jaime 1:17:06
So I think when I plateaued on ozempic, I was, I didn't have too much further to go. So I started at about 175 pounds, you know, which, if five foot three is the best, especially carrying it around the middle, like, you know, you know, I think mine and your concerns were the same as, like, I don't want to have a heart attack. I don't want to have clogged blood vessels and balloon angioplasties and all this other stuff. I think I got down, like, in like, the high 140s maybe, okay, and, and I still, you know, would have felt comfortable losing a little bit more weight, but also I my insulin sensitivity plateaued. And I said, I think we can do better than this. And she said, Do you want to try mountjaro? So we tried mountjaro. Literally within two days of my first dose. I had to decrease my insulin again. I've gone from, I think, close to 70 total units a day, which I know isn't actually that bad for somebody with insulin as good as good or bad, but, yeah, definitely, you know, I guess it really your insulin needs are so different and like, I don't know what my insulin needs are when I was a growing 13 year old, either, but now I think my maximum is like 26 units a day. That's crazy.

Scott Benner 1:18:19
Arden's insulin sensitivity went from one to 42 to one to 63 and her basal is point four lower an hour. And like and her insulin to carb ratio is is weaker. And like everything she just

Jaime 1:18:36
everything has changed. Everything for me has changed. And I I think that my my rate my like the you said, one to 42 one to 68 I think mine changed about the same way hers

Scott Benner 1:18:48
did insane, right? She's not even on what they would consider

Jaime 1:18:52
and then, like when I, when I go into manual mode, I'm on the the OmniPod now, because a tubed pump got harder to manage with when I became a competitive Irish dancer last year. I don't love the algorithm as much as I loved the tandem algorithm, but it is what it is. It's just it makes my life easier. And, you know, truth be told, I don't pay enough attention. I forget to bolus a lot and do stuff, and the tandem is just that. Tandem algorithm is just better at dealing with my mistakes. I gotcha. I understand. But when I go into manual mode, I had to knock my my basal rate from like 1.4 an hour all the way down to like point eight. Yeah,

Scott Benner 1:19:32
that's my expectation. Where do you hear episodes I have coming out with like, one? It's like a kid who's almost not using insulin at this point. They had type one for three years we're like, going off, yeah, it's amazing. I'm not saying it makes the diabetes go away, but it just changes the sensitivity so much, so it's crazy, and

Jaime 1:19:48
it helps a lot, and it probably helps you maybe not become insulin resistant, and it helps you with the digestive issues that I feel like nobody was talking to me about, a lot of comorbidities. The word I want to use, but they're not necessarily other diseases that come with type one, you know, and I've heard a lot more about that, like from the episodes with you and Jenny and, you know, learned a lot about it in the podcast group. And by the way, if my husband had never been diagnosed with a brain tumor, I probably never would have known about the juicebox podcast, really? How does that happen? Because my husband's nutritionist at the cancer center is a type one diabetic, and she actually was in an ad for the OmniPod, and she told me about it and told me to join. And so I did. And you know, maybe a year later, here I am. We were seeing her because he was so cachectic After he finished chemo that he's six foot four, and he got down to 177 pounds, and at the time, I was 174 so we went to see Kelly,

Scott Benner 1:20:52
Jamie. We have to find a place to stop this, because I've got to jump. But I could talk to you forever, and that's that's a good sign, absolutely. So I actually have some notes here. I'm going to talk more about the MFR gene on the podcast and Amazon. I'm going to bring up you're actually the second person to mention Amylin to me this week, so I'm going to find a way to jam that in there too, in the podcast. But overall, I'm just making it, you know, part of my mission to tell people about the GLP medications and the type ones, because you would have never looked at Arden and thought, you need to lose weight. But she's lost weight, and she looks healthier, right? And like just her insulin sensitivity is way down. Her spikes are fewer. They're not even as big. They weren't big to begin with, and they're lesser. Now, even if she really screws up and her blood sugar goes to 200 it's back down in like, 45 minutes, and that's the algorithm handling it, not her. A lot of positive I'm seeing with this. I've lost almost 50 pounds. My wife has lost, God, I don't even I've lost 40 at this point. Yeah, my wife's lost a lot of weight. She looks like a different person. Yeah,

Jaime 1:21:55
I think where was I hiding that? Yeah, I know it was. It was in my belly. Case you're wondering, because I never really felt like I looked as heavy as I was, but I wasn't. I wasn't happy with how I looked, but more importantly, I wasn't happy with how I felt. Oh,

Scott Benner 1:22:08
Jamie, besides the felt and the healthy part, what I've learned about your expectation about what you actually look like, I've learned so much about that this year because I had an incorrect vision of myself every step of the way.

Jaime 1:22:23
I think I always have to. And, you know, it's just one of those things. And I, you know, it's especially common, unfortunately, with women, but I think it is more common with men than we realize, too.

Scott Benner 1:22:34
Yeah, oh, hell, I thought I was fine, and I lost the first 20 pounds. Was like, I don't even look like I lost weight. Like, what am I taught? And it's not like body dysmorphia. I was If I had body dysmorphia, it was before, when I was looking at myself fat and going, I'm fine. Like, you know what I mean? Yeah. So I

Jaime 1:22:49
do have a little bit of body dysmorphia. So I struggle to see myself in a positive way sometimes, you know, which I'm very careful about, about around my daughter, because I think I Yeah. You know, my mom struggled with anorexia when she was younger and and all that. So it just, it's, it's something that you fight because you don't even realize how much just seeing somebody else look in the mirror and say things about themselves has an influence on you. Yeah, listen,

Scott Benner 1:23:17
I saw myself positively. That wasn't my problem. Was I wasn't seeing myself accurately.

Jaime 1:23:22
You know, that can be a problem too. I'm fine. I'm fine.

Scott Benner 1:23:26
I have wide shoulders. I'm carrying it well, people don't notice. I had some my my sister in law told me yesterday I saw it for the first time in a few months. She goes, I've never thought of you as heavy. I pulled out a picture I showed her from last year. I'm like, look at that. And she goes, Oh. I was like, ish, because

Jaime 1:23:39
I can't believe the difference that I see in photographs now to and, you know, and especially with the dancing I was very unhappy with, with how I looked, you know, in my performance attire. And it's really important, especially with competitive Irish dance, and when you're out there performing for the public, that you feel good, yeah, you know. And you want to feel confident and beautiful. And it's not just about your size or your shape, but I didn't feel healthy, and I felt sluggish and tired, and I didn't feel like I could get through my dances. And I don't really think that that had as much to do with my weight as it just did with I was depressed, and I didn't feel as healthy as I felt the year before. And I really wanted to get a handle on these insulin issues, and, you know, so many other things, other than just I want to be skinny, because it's not really I'm not skinny now. I'm muscular, and I actually, I feel like for the first time in my life, I'm almost 45 years old, and when I look in the mirror, I'm happy with what I see.

Scott Benner 1:24:36
I have, I'm gonna actually let you go after this. But I was on stage speaking a few years ago, and the photographer from the event approached from the floor level, and I was on a riser, and I, while I was speaking, put my hand out and went, do not take my picture from there. Wow, don't shoot me from up. Are you out of your mind? And I was a terrible angle. I was like, No. And I made it into a joke. And the thing I'm like, Yeah, I said, if you want to take my picture, I said, Go get a 10 foot. Matter, climb up on top of it and take it from there. But you're not doing it from here. And then a poor guy had to go to the back of the room. And then, by the way, in the videos later, from that were done, from the thing, they kind of kept me out of it, wow. And I was because I was like, Oh, do not take my picture like this. Okay, you know. So I felt like I was okay. But then when you ruin push came to shove, I was like, Oh, hold on, no, no. So anyway, my life is immeasurably better at the moment than it ever has been as an

Jaime 1:25:27
adult. Same here. My health is better and my dancing is a lot better. You know, just because I've been able to build muscle and get stronger and strengthen the right parts of my body and not get injured again like I did last year when I was just not at my peak performance.

Scott Benner 1:25:42
I have been overweight since I was five. Just the littlest thing I'll tell you about last night, I had to, we were like I said, it was at a family function. I had to run outside to the drive, to the driveway of this house, to grab something out of my trunk to give to somebody else who we'd brought something to give them, right? And I get outside, and it's cold out, and, you know, I say goodbye and everything, and I put the thing in her trunk for and I turned to the house, and I'm like, I'm chilly. I'm gonna go faster. That's all my brain said. And I started jogging, and I was bouncing when I was jogging. I was like, I can tell how much light are I am. Yeah. Like, that's insane.

Jaime 1:26:18
Obviously, you know, it's much easier on your join so,

Scott Benner 1:26:23
Jamie, you'll come back on. We'll have you back a year from now. We'll do it again. Okay,

Jaime 1:26:28
yeah, we'll see where we're at in a year. Yeah, I

Scott Benner 1:26:31
hope you're in a good place all of you.

Jaime 1:26:33
I hope I just have kind of an uneventful year. I mean, last year was definitely a better year for us. We got to concentrate on happy things, and we did, you know, do our Northern Lights trip and nice, compete in Irish dance, and that's pretty much all we did last year. And it was fantastic. Good

Scott Benner 1:26:49
for you. Good Well, please send my best to your husband. And I really appreciate you. I really appreciate you coming on, sharing all this with me sincerely.

Jaime 1:26:56
I appreciate you having me. And, you know, dealing with my ADHD conversation,

Scott Benner 1:27:01
mine. You ran me over a couple times. I don't mind. I know. I know the game. It's okay.

Jaime 1:27:06
I told you. I told you I was gonna do Yeah, don't

Scott Benner 1:27:09
worry. I was ready. All right, let me think of my image up on this other thing. Hold on one second. Thank

Jaime 1:27:13
you so much. Thank you. You

Scott Benner 1:27:20
I want to thank the ever since CGM for sponsoring this episode of The juicebox podcast, and invite you to go to ever sense cgm.com/juicebox to learn more about this terrific device, you can head over now and just absorb everything that the website has to offer, and that way you'll know if ever since feels right for you, ever since cgm.com/juicebox, Arden started using a contour meter because of its accuracy, but she continues to use it because it's durable and trustworthy. If you have diabetes you want the contour next gen blood glucose meter, there's already so many decisions. Let me take this one off your plate. Contour, next.com/juicebox getting older means a world of change, but some things still stay the same, like being at risk for type one diabetes, because type one can happen at any age. So screen it like you mean it. If just one person in your family has type one, you're up to 15 times more likely to get it too, and 50% of type one diagnoses happen after the age of 18. So screen it like you mean it. Type one diabetes starts long before you need insulin, and one blood test could help you spot it early and lower the risk of serious complications like diabetic ketoacidosis, known as DKA. So don't get caught by surprise screen it like you mean it, because getting answers now can help you get prepared. The more you know, the more you can do. So don't wait. Talk to a doctor about how to get screened. Tap now or visit screen for type one.com to learn more. Again, that's screen for type one.com and screen it like you mean it. Thank you so much for listening. I'll be back very soon with another episode of The juicebox podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts. Please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcast and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would

Unknown Speaker 1:29:42
you like a Christmas card?

Scott Benner 1:29:43
The episode you just heard was professionally edited by wrong way, recording, wrong way, recording.com, do.