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Here we are back together again, friends, for another episode of the Juice Box Podcast.
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Hi, I'm Suzanne. I've had type one for probably 34 years. I've had chronic fatigue syndrome for 24 years. I'm a musician and I take care of my mother, who also has type 1, and she's been living with me for about 17 months.
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If you're looking for community around type 1 diabetes, check out the Juice Box Podcast. Private Facebook group juicebox podcast type 1 diabetes, but everybody is welcome. Type 1, type 2 gestational loved ones. It doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice box podcast type 1 diabetes on Facebook. All right, let's get down to it. You want the management stuff from the podcast. You don't care about all this chitting and chatting with other people. Juiceboxpodcast.com lists. They are downloadable, easy to read. Every series, every episode, they're all numbered. Makes it super simple for you to go right into that search feature in your audio app. Type juicebox1795 to find episode 1795. Juiceboxpodcast.com lists. Nothing you hear on the Juice Box Podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your healthcare plan. This episode of the Juice Box Podcast is sponsored by usmed usmed.com juicebox or call 888-721-1514. Get your supplies the same way we do from usmed. Today's episode is also sponsored by Omnipod. Check out the Omnipod 5 now with my link. Omnipod.com juicebox you may be eligible for a free starter kit. A free Omnipod 5 starter kit at my link. Go check it out. Omnipod.com Juicebox terms and conditions apply. Full terms and conditions can be found@
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omnipod.com juicebox hi, I'm Suzanne. I've had type one for probably 34 years. I've had chronic fatigue syndrome for 24 years. I'm a musician and I take care of my mother, who also has type one, and she's been living with me for about 17 months.
A
Oh, I am excited to talk to you.
B
Great.
A
Also, do you know that Suzanne is the name of the orangutan in the Jay and Silent Bob movies?
B
In the what movies?
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Yeah. I didn't think you would know. It's okay, Suzanne.
B
Okay. No, I did not know.
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The people listening who know are like, oh, no kidding, he's right.
B
Okay.
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But the rest of you are going. I don't know what he's saying. Anyway, let's figure out who you are. How old are you?
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Okay. I'm 62.
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Oh, you have a young voice.
B
Yeah, you know, I. I do. I think I've worked with kids a lot in my life, but I never had kids of my own, so it keeps me young.
A
I have to tell you, I'm going to take a. I'm going to take a page out of your book today. I swear. I thought you were in your 30s when you started talking.
B
Oh, great, great.
A
I'm going with that.
B
Some days I feel like I'm in my 90s, so there you go.
A
Yeah, we'll. We'll get to that as well. So, okay, you're 62. And when were you diagnosed with type one? At what age?
B
I was 28.
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That's 34 years ago.
B
Yeah.
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Okay.
B
Yeah.
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And you say your mom has Type one?
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She does. Well, I mean, she. When she was diagnosed, she was diagnosed as type 2, and then she began to need insulin.
A
Okay, what age was that for her?
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She was in her 50s, I believe.
A
Okay.
B
Yeah. It wasn't too long. It was probably within a decade after I was diagnosed.
A
Well, how old is she now?
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She's 85.
A
Damn. All right.
B
Yeah.
A
Well, good for her.
B
And she's got a fascinating story, too.
A
So I think we're gonna pick through the whole thing, Suzanne. Don't worry.
B
Okay.
A
Okay. So you're diagnosed 34 years ago as an adult, out of nowhere. Did it feel.
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Yes.
A
Yeah.
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Yeah. Like, I have some distant relatives that had it, but it wasn't something we talked about in our family. I was a complete textbook case, but I had no idea. And I was diagnosed in December, and I wasn't feeling well since the spring. And I was a. I'm a singer. And the first thing was I lost my vocal range. I had a range of about five notes, and I have a huge range, but so that was one thing. And then there was just all these little weird clues along the way, and then it was a big surprise, finally.
A
You said distant relatives had Type one, Like aunts, uncles, second cousins, like great,
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great grandfather, maybe, and my grandfather's sister or something like that.
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Okay, so nobody who you even were around any frequency. Okay.
B
Right.
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How about other autoimmune stuff in your extended family?
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Not that I really know of.
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That's all right.
B
Yeah.
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How about your mom? Does your mom have anything besides the diabetes?
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She's got some eczema, and she's got. She's got Fatty liver disease, but I don't know. I don't think that's autoimmune, but the eczema probably, definitely is.
A
Yeah. Is she overweight?
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She was. Now she's very thin through the process
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of the end of her life. Is that what's doing it, or do you think they're leaving her blood sugar?
B
It probably could be. We thought she had dementia when she moved in with me, but it turns out she doesn't. But that's a whole nother story in itself.
A
Oh, we're gonna get to how you misunderstood that your mom had dementia. That's gonna be good, too. You're gonna be a font of conversation. This is excellent.
B
Yeah, I know. I'm like, I hope we can. I hope I can get everything. Yeah.
A
Everyone settle in. I feel good about this. Okay, so you're diagnosed. You're. You're single person now. You said you're not married, but have you ever been?
B
No, I've never been married. A few near misses, but no. Yeah.
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Do you mean that sadly or happily?
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Both.
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You're like, oh, I got away with it a couple of times, Scott. I almost got hooked up to a real dud.
B
But, you know. You know what? I have an anecdote that you might be interested. First of all, three guest guesses. Who was my. I. I live in Iowa, but I lived most of my adult life, and I was diagnosed living in Boston. Okay, so three guesses who one of my doctors was for a number of years.
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Go ahead, just tell me.
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Dr. Hamdi was my doctor.
A
Really?
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Yeah, Yeah, I. He was great.
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When you heard him on the podcast, you're like, huh, that guy used to be my doctor.
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Yeah. I'm like, oh, Dr. Handy. Yeah. And it's funny, because I didn't even know he was a weight expert, because my weight was five. Fine. Then he always tell me.
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Yeah, yeah, yeah.
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He used to tell me my weight was perfect. I mean, who doesn't need a guy in their life telling them that their weight is perfect?
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I could use that, by the way.
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But anyway, so I was. I was. Yeah. Anyway, I was trying to make a relationship work with somebody, and it was really affecting. I. I didn't really realize it until, of course, you know, I'd ended everything. But it was really obvious from my A1C. And I told him, you know, I was trying to make this relationship work. Like, my A1C came way down after all of the stress. And then. I'm not saying all relationships are that stressful. This was a. Definitely a. I'D been in other relationships before that were not that stressful.
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Explain to me this is after you're diagnosed.
B
Yes.
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And you're working through. It's. It's tough dating as an adult, isn't it?
B
Yeah, yeah, yeah.
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You don't get to grow with the person. You get, like, the fully formed person, and you have to see if you can make it fit, I would imagine.
B
Yeah, yeah, yeah.
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You're dating someone, it's going what you think is well enough to put effort into it, but it was stressful.
B
Very stressful. And. And it was very obvious, the difference between my A1C when I was trying to make the relationship work and when I had ended it.
A
Wait, because of, like, adrenaline, cortisol, et cetera, or because you just weren't focusing as well on yourself at that point?
B
No, I think it was just. Yeah, I think it was just this. This was a really, really stressful situation.
A
Oh, I didn't know that could happen. I'm probably killing my wife and not realizing it. Oh, well, if you hear this, Kelly, I'm sorry.
B
No, no, it was just super stressful. And. And it was very obvious in the difference of my A1C. And I mentioned that to Dr. Hamdy. So the next time I came to see him, he's like, so, what's going on with the boyfriend? And, you know, so, did Dr. Hamdi
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make you break up with him? Is that what happened?
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No, no, no, no. And I. And I don't even think I'd mention him until, like, I saw, like, wow, this is pretty. This is pretty intense. And he. He wasn't like, oh, that couldn't be. He was like, no, yeah, this happens.
A
No kidding. I get. I should probably tell people just because everyone doesn't listen to every episode of the podcast, much to my chagrin. But Hamdi is in episode. It would be nice if Spellchecker didn't change what I typed. 14:11 GLP essentials with Dr. Hamdy. He was really excellent. I got a lot of good feedback about him being on the podcast, actually.
B
Yeah. No, I wish he was still my doctor right now.
A
Yeah. So you moved away from him? You broke up with him and the guy?
B
No, no, I moved back to Iowa. I moved back to Iowa because I. Ten years into diabetes. I got chronic fatigue syndrome.
A
Oh, okay.
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I was. I was really having a hard time just, you know, making life. It's very expensive to live in Boston, for one thing.
A
Yeah, but. And cold. I don't like the idea of how cold.
B
You know, it's kind of the same here. It's. It's. It's not always at the same time, but it's. It's pretty much the same weather, same thing.
A
So would you move home to be with your mom or to be around family?
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Yeah, I moved to be with my mom, and I lived with her for three years, and then I got my own apartment.
A
Wow. It took you three years to get on your feet after that. Was that financial or medical?
B
Financial, for one. Yeah. And I was trying to get on disability when I was in Boston because I loved being in Boston. I got denied, and then I moved here, and I wasn't even gonna apply again. I was so frustrated, and I applied and I got on right away, and so then I was able to get my own place after that.
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What year was this?
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This was 20. I moved at the end of 2014.
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2014. Okay.
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And then I think I got my own place at the beginning of 2018.
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And how did that impact diabetes, the chronic fatigue?
B
It's hard to say. But I will say one thing. The difference between chronic fatigue and diabetes. So, diabetes, you know, I'm feeling sick. I finally go to the hospital, go to the doctor. He sends me to the er. I'm in dka. I spend a week there. I was in intensive care for the, like, first three or four days. I was. I was a mess. My. My doctor didn't think I was going to. He was surprised to see me the next day, so. But I'm there. I come out, and then I live my life. You know, I have to check my blood sugar. I have to take insulin, But I'm living my life with chronic fatigue. You feel sick, you go to lots of doctors, and they don't have any answers, and, you know, and you don't get your life back. So.
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Has anything helped over the years?
B
Yeah, I'm sure lots of little things that I don't even realize that if I stop doing. It's just a lot of pacing and having to. Yeah, it's sounds like long Covid. Yeah, a lot of people say it's pretty much the same thing. And I. I even had my doctor, like, go on a doctor had me go on a protocol, and I was a lot of supplements, and I was just too sensitive to a lot of the supplements to.
A
Have you ever had in the past, like, Epstein Barr or.
B
I don't know, like, it's like the tests I've had for that are kind of. What's the word? Either equivocal or unequivocal or equivalent. Like. Like like probably the test said, I don't know.
A
Is that right?
B
Yeah, yeah. And I've, I've had one virus called HHV6. That's a virus that I have had and I've, I've, I, I was going to treat for it and then I decided not to. I, you know, it's kind of a six of one, half dozen of the other, dealing with side effects and all that. So, I mean, I've tried so many different things. I've, I've recently done like an adrenal program and I've worked with the same doctor previously when I was first diagnosed, but it's still, I'm, yeah, I feel like I'm getting worse lately, like my fatigue and, and I feel like I'm having new issues now and I'm just
A
like, okay, I'm doing some picking. While you're talking viruses linked to the onset, Epstein Barr viruses, just mono, HHV6 influenza, SARS viruses that are Covid relatives. But it was 2014. Not that you couldn't have gotten a different virus previous to that. It often goes hand. They don't call it autoimmune, but there's doctors who talk about it like it is. This episode is brought to you by Omnipod. Would you ever buy a car without test driving it first? That's a big risk to take on a pretty large investment. You wouldn't do that, right? So why would you do it? When it comes to choosing an insulin pump, most pumps come with a four year lock in period through the DME channel and you don't even get to try it first. But not Omnipod 5. Omnipod 5 is available exclusively through the pharmacy, which means it doesn't come with a typical four year DME lock in period. Plus you can get started with a free 30 day trial to be sure it's the right choice for you or your family. My daughter has been wearing an Omnipod every day for 17 years. Are you ready to give Omnipod5 a try? Request your free starter kit today at my link omnipod.com Juicebox terms and conditions apply. Eligibility may vary. Full terms and conditions can be found@ omnipod.com juice juicebox find my link in the show notes of this podcast player or@juiceboxpodcast.com youm've probably heard me talk about US MED and how simple it is to reorder with USMED using their email system. But did you know that if you don't see the email and you're set up for this. You have to set it up. They don't just randomly call you. But I'm set up to be called if I don't respond to the email because I don't trust myself 100%. So one time I didn't respond to the email, and the phone rings at the house. It's like, ring. You know how it works. And I picked it up, I was like, hello? And it was just the recording. I was like, you asked Mad doesn't actually sound like that, but you know what I'm saying? It said, hey, you're. I don't remember exactly what it says, but it's basically like, hey, your order's ready. You want us to send it? Push this button if you want us to send it. Or if you'd like to wait. I think it lets you put it off like a couple of weeks or push this button for that. That's pretty much it. I push the button to send it, and a few days later, box right at my door. That's it. Usmed.com juicebox or call 888-721-1514. Get your free benefits checked now and get started with usmed Dexcom Omnipod Tandem Freestyle. They've got all your favorites, even that new eyelet pump. Check them out now@usmed.com juicebox or by calling 888-672-101-1514. There are links in the show notes of your podcast player and links@juicebox podcast.com to us Med and all of the sponsors. Yeah, do you have Hashimoto's?
B
When? Okay, when I was first getting the. Dealing with the fatigue, I went to a naturopath and she took some tests and I had a lot of antibodies for my thyroid. I've never been able to take thyroid medication. I have a doctor that tests my thyroid on the regular with diet and such. I was able to get all my antibodies to go away, but I feel like I probably should be tested again.
A
Yeah. I mean, do you remember how long ago was it that you were tested the last time you got a full thyroid panel?
B
A full thyroid panel? Probably. Probably within the year.
A
Do you know what your TSH was then?
B
It's always super normal. Like, it's like, tsh.
A
What numbers? What does that mean? Numbers?
B
I forget because I say I'm super
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normal, but then people meet me and they don't say the same thing. So.
B
Okay, I can look it up while we're chatting, which probably. Yeah, yeah, absolutely. Absolutely.
A
Thank you. I want to keep talking about this for half a second.
B
Sure.
A
You're describing feeling like. You know, my wife talks about Long Covid. We. We like, zapped her out of Long Covid with nicotine patches.
B
Wow.
A
And so if you haven't heard that, it's like at the end of an episode somewhere. So I'll go back over it with you for a second. And I have no idea if these two things, like, will interact. But while I'm talking to our overlords and you're speaking, I said, can nicotine help with this? And it says, some people think nicotine might help. But right now, the evidence is very weak and mostly theoretical. Nicotine affects several systems that appear abnormal. And me, cfs, nervous system, brain alertness, inflammation, et cetera, anti inflammatory pathways. Nicotine can activate something called the oh, my God. Cholinergetic anti inflammatory pathway, which may reduce inflammatory signaling from the immune system. So I'm going to ask it in Covid. In long COVID patients, the nicotine spike protein idea. Some research proposes that SARS CoV2 spike protein interacts with nicotine receptors. These receptors are involved in automatic nervous system regulation, inflammation control, brain signaling, muscle function. The theory suggests the spike protein might interfere with these receptors, which could contribute to symptoms seen in long Covid pots, severe fatigue and brain fog. So nicotine binds to those same receptors. So the idea is, is that nicotine might compete with the spike protein at the receptor and restore the signaling. And I will tell you that, you know, my wife was sort of at wit's end with long Covid and I had heard this.
B
So you know what it's like. You know what this is like, horrifying.
A
Absolutely. So, you know, go to the mall, come home. Three days resting.
B
Yeah, exactly, exactly. Like, I'm very excited about this interview, but I'm like, okay, at least I'm very glad I don't have anything else I have to do today, right?
A
No, no, no. I've seen it for a while now. I saw some people online talking about it. Seemed like bro science at that point, but I still mentioned it to my wife. Let me clear my throat. Anyway, she pooh poohed me. And as she should have, by the way. And. And then I'm talking to a lady on the podcast a few years later, a few months later, excuse me. And she says, oh, I really get my long Covid under control. And I was like, how'd you do that? And she goes, oh, you know, I hope this doesn't sound crazy, but I use nicotine patches. And I was like, oh, I've heard of that. We talked it through and I went on Amazon, ordered nicotine patches and, you know, basically said to my wife, like, you know, just do this. What could. You know, it's not going to hurt you. It's not like. It's not. It's not like your head's going to pop off. Like, put the nicotine patch on once every 24 hours and let's see what happens. And I'd say about three weeks into it, I overheard her on a call with a colleague telling them, my husband, like, he suggested this, and I feel a lot better now. And it really did help her, astonishingly.
B
Anyway, I mean, it might be worth a try. I'm very sensitive, like, to a lot of things, so it's like I had to be careful with like, regular coffee.
A
Start with half a patch. Cut it in half.
B
Yeah, yeah. No, I, I mean, so I, I did find my TSH and I'm 2.23.
A
Yeah. See, I would tell you to listen to episode 413 of the podcast where integrative doctor and endocrinologist is going to tell you that anything over two one with symptoms needs medication.
B
I've tried thyroid medication many times and I.
A
It brings your TSH down but doesn't make you feel better.
B
I can't even take it for like more than a week. What happens? I. What's the word? I can't describe it, but I feel horrible. Like, it's, It's. It's kind of makes me like, race. Like, I can't.
A
Oh, your heart races?
B
Not my heart, but just my whole being. I can't even explain it.
A
But how much are they giving you?
B
We always go with the lowest doses. We always start with the. And I have a great doctor.
A
I believe you.
B
Well, I. It's funny, like, I. She has a. A functional medicine practice, but she can't see me there because I can't afford her prices. But I see her at another clinic that she works at through my insurance, so she doesn't have all the time to. But. But she, she does what she can for me. And so she, she tests. She's constantly tests my. And I'm always on the low end of normal, so she'll like, well, let's just try something. So I've tried different forms. I've tried cytomel. I've tried. I think I did armor a long time ago and I didn't think it did anything and so I stopped. But I think I should try that again. But my insurance doesn't pay for it. That I wouldn't.
A
She was giving you the T3 without the T4.
B
We've tried everything. We've tried the. We've tried all the things.
A
Have you ever tried Tyresin? It's like a. Yeah, yeah. You tried that.
B
It's funny.
A
Okay.
B
It's funny because I was going through some stuff and I found it the other day and I, you know, I was like, oh, yeah, I should probably throw this out or pop one in
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your mouth and see what happens.
B
Yeah.
A
So you're telling me that when you're on the lowest dose, it speeds you up.
B
Yeah. And not in. Not a. Not a comfortable way.
A
Okay, I, you know, I understand that part. Like, did you try to go to, like every other day or did.
B
I might have. I don't remember.
A
Because what other. What do you have all the classic, like, Hashimoto's symptoms lately?
B
I have the weight gain, and that's been in last few years.
A
Mm.
B
Remember what the classic symptoms are?
A
Well, fatigue. Yeah. Persistent tiredness, low energy even after sleeping. Weight gain, usually 5 and 20 pound range. Happens even when you're eating less. Cold intolerance. Do you have that?
B
Sometimes, but not all the time. I get. Actually, I get hot a lot.
A
Okay. Brain fog. Slower thinking. Memory.
B
Yeah.
A
Okay.
B
Big time. I mean, that's been for 24 years.
A
Depression or low mood can be.
B
Yeah.
A
Hair, skin and appearance. We're looking for hair loss on the scalp. Loss of the outer third of your
B
eyebrows, probably the eyebrow thing. And I. I've gone through bouts of hair loss. Right now I'm. I'm not. But, you know, like, it just kind of comes and goes.
A
Yeah. Suzanne, do you want to keep going or do you want to assume that you have Hashimoto's rough or flaky skin? Paler yellowish tone?
B
No, not really.
A
Okay. Puffy face around your eyes, maybe. Brittle nails.
B
Yeah, that's. I mean, I mean, yeah, definitely.
A
Constipation, Muscle weakness.
B
The muscle weakness is new. I mean, the fatigue has been going on for 24 years, but the muscle weakness is really within the last few years.
A
Okay. Joint or muscle aching can come and go back in the day. Heavy or irregular periods.
B
Yes.
A
Low libido. Sorry, Susan.
B
Probably not.
A
Oh, no, you're still getting after it. Suzanne. Is that what you're telling me? What is. What is happening right now?
B
I'm just saying. I'm just saying.
A
Oh, probably you don't want to answer.
B
No, it's just kind of a sensitive question, but sure it is.
A
Well, I mean, it's a podcast. If it Was.
B
Yeah.
A
You know, if it was pbs, I probably wouldn't have asked you, so you don't have to answer anything you don't want to answer.
B
Okay.
A
Okay. Anxiety, heart palpitation, sweating, irritability.
B
That can be. Yeah.
A
Okay. Wow.
B
But that's also good. That's all. I mean, I. I just don't. I don't know. I just don't think I have Hashimoto's, but. But I. I know that if I. If I don't eat right, like. Well, maybe, you know, maybe because diet has kind of kept things at bay, but right now. Yeah, nothing's keeping anything at bay.
A
I mean, listen, a lot of these things are like vagities that like, apply to a lot. It's a problem with like a lot of autoimmune stuff actually.
B
Right, right.
A
Is that you just can be like, hey, do you have this, like. Yeah, 40 other things?
B
Yeah, no, no, the. Yeah, the. The non specific symptoms.
A
Yeah, yeah. When you're on the meds, racing heart, anxiety, jitterness, sweating, trouble sleeping, shakiness, feeling amped up. You had those things. Okay. Did it start with palpitations?
B
No, I don't. I don't think I had palpitations that I know of.
A
The Internet says that that very possibly just has to do with the dose being too high, but we always.
B
We always started low. Like. Like if the doctor said, oh, take this dose, I'll be like, oh, no, let's take it even lower.
A
You were able to like take half even or like.
B
Yeah, yeah.
A
Did it happen like as soon as you put the first pill in, or did it take a little bit of time?
B
Both, usually. Usually it took a day or two at least.
A
Yeah. You are a lightweight though. Generally speaking, like, a lot of stuff impacts you.
B
Yeah, I'm very sensitive.
A
Yeah, that was a nicer way to say it. Yeah. Yeah. I am very similar. Like when I. If I go for a procedure, they put me out. I'm like, you're need much of that? Yeah, I'm like, I'll go out pretty easy. Okay. Well, I mean, listen, I'm sorry. I'm not. I would just. I'm just trying to help you, like, think.
B
No, I appreciate. I appreciate it. You know, I feel like I wish I had House in my life, except without the drug problem and the snarky attitude. I don't know, you know, somebody who's like, we're gonna figure this out, you
A
know, I thought the attitude was fun. The drug problem was weird.
B
Well, it wouldn't be a show without the attitude.
A
I guess you're right. Yeah, I guess you're absolutely right. I. Yeah. I don't know. Like, it. I mean, if it's Hashimoto's and you need the medication, then just splitting doses or just using a much lighter dose could possibly be your answer. Like, as much as you didn't like how you felt when you were on it, did it dissipate some of the other problems?
B
Not that I know of. And I think. I think the reason I got so crazy on it is because I don't really need it. I don't think that's really my root issue.
A
I take your point. Like, if you didn't need it, this is exactly the outcome that would come from it. Yeah. Yeah, for sure.
B
But. But I don't know. But. But I am going to have. I was thinking I should have doctor, My doctor do a thyroid panel next time I go see her. A full one.
A
Yeah. It's a shame. I mean, honestly, though, I mean, for 30 bucks, you got nicotine patches coming from Amazon, so.
B
Right.
A
You know, I mean, I would tell you the same thing I told my wife. They're seven milligram patches. It's $30 for 14 patches. So I basically. I think I paid 60 bucks for a month. She did it for a month and she was like, better. So I. But I will tell you, I have dabbled with them just so I understood what was happening to her. And it would be fair to tell you that after not using one for a while, I. I tried to just slap one on again because she stopped and started. And I wanted to see what was coming from stopping and starting and it. Like, I did. Like, I got nauseous from it. Like, it was too much for me. So I would. If I was. If you do this, I would definitely start slower. Like, there's a world where I might even, like, quarter those patches up and wear like a quarter of it for 24 hours just to try to get yourself accustomed to it or be, you know, make a science experiment out of it and figure out how much of it. I'm not saying a quarter is the right amount, but, like, just to give yourself a little bit of it and see if you can ramp up to it. Because, I mean, honestly, for, you know, for a month's worth of trying something, if it actually helped you, like, think of how amazing that would be.
B
Right, right.
A
She's not continuing to do it. She just did it and she stopped.
B
Wow, that's. That's interesting.
A
Yeah. Look at. You can look it up there's. A website online that talks about nicotine and Covid. If you want to look into that.
B
Can you. Can you recommend a brand?
A
I was using Havitrol, Havatrol. H A B I T R O, L. There's other ones. Some of them are less expensive.
B
Okay, well, just sometimes you go. You go to look for something and there's a million choices.
A
Yeah, yeah.
B
Somebody just give me it. That worked for them.
A
Tell me what to do, please. Yeah, yeah. I have to find. Let me see if I can find the nicotine protocol. It's covidinstitute.org It'll talk about nicotine. What nicotine cannot do. Nicotine doesn't. It's. It's so funny. Like, everyone online says nicotine, like, interacts with the receptor, and so it doesn't actually, it doesn't touch the spike protein itself. And I don't even know I'm. I'm looking here. It weakly binds to the alpha 7 nicotine receptor on a different site, the Spike protein. So it's unable to dislodge the spike protein from the nicotine. Oh, see, this is interesting. So covidinstitute.org is telling you nicotine is not going to work on long Covid. That's interesting. And if you go to a different website.
B
Good thing you didn't know that, right?
A
No, no. I mean, honestly, like, yeah, I just went with what the lady on the. Like, the conversation is like. Look, I tried it, and it really helped me, and I thought, well, for 30 bucks, we can get going and see. Yeah, yeah, it's all over the place. Nicotine patches could help. Nicotine patches won't help. Blah, blah. The world is so interesting, isn't it?
B
Yeah. When I. When I was first dealing with the fatigue, everybody was telling. All the doctors were telling me I was depressed, and that's why I was tired. And so they started me on the tour of SSRIs, and I didn't have a good experience with those. I took several. And finally I was like, I'm done with this. And I'd read about this stuff called 5htp in a magazine, and I thought, what the heck? And I tried it, and it really helped with my mood.
A
Okay.
B
It really. So, you know, it's like, sometimes you're just like, I'm just gonna try this.
A
Hey, listen, when you're in your situation, I say, why not?
B
Yeah, yeah, yeah.
A
Because if it's not thyroid, and I mean the ssr, I think that's just what they do to ladies when they. They have your complaints. That's just a bull thing they do.
B
That's. That's why when I go to the doctor and they say, are you depressed? I'm like, I'm good. I'm just like, I don't want to now everything's fine. I don't want to go down that route.
A
I love chronic pain and fatigue. Thank you. Yeah, yeah. 5 HTP precursor to serotonin. Serotonin. It can increase serotonin or melatonin, help with mood, calmness, pain, regulation, and sleep. Yeah, it's interesting. Mood and anxiety. Low thyroid function can be associated with lower serotonin signaling, so raising serotonin may help with low mood irritability, anxiety, feeling mentally overwhelmed. Interesting.
B
Yeah, yeah.
A
Very cool.
B
So I underst. I'm. I'm. I'm not adverse to just trying something.
A
Sure. No, it doesn't sound like it. No. You were like, hey, I heard of something in a magazine, I'll swallow it.
B
Exactly.
A
It sounds crazy. I mean, a little, but I think maybe one more generation of people living on the Internet, no one's gonna think of that oddly anymore. You know what I mean?
B
Like, Right.
A
Yeah. Because you and I are old enough to remember if somebody said something to you, like, that is crazy because you didn't know about it or couldn't talk to anybody else.
B
Yeah, Right, right, right.
A
How do you deal with the. The diabetes? Is it a pretty successful thing? Is it a background thing for you? Or is it a thing that even years later, you still struggle with?
B
Well, here's the thing. I feel like when I was first diagnosed, I took it in stride like it was a background thing.
A
Okay.
B
You know, I mean, like. Like you always say, you know, if you're going to have diabetes, this is the time in the world to have it. You know, like, we've got the tools. You know, I was grateful to be able to do finger sticks even at the beginning. And right now, I do a closed loop with tandem, and that's been pretty good. But the thing about it is, now that I have chronic fatigue, it's just another burden. The diabetes is like a burden. And then now taking care of my mother with diabetes in just everything from dealing with customer service to dealing with just the site changes, and if I'm going to go away, I mean, this is a big thing right now. Like, I was able to travel a couple times last year. I went for. I used to go for, like, six weeks at a time because I don't. I don't have a lot of money, and all my Close friends are in Boston, so I'll just go there.
A
Yeah.
B
But now I, you know, I could only. I went for first I went for one week. The second time I went for, I think, two or three weeks. And finding people to change her stuff was really hard. And we live in a smallish city, and so just finding people to deal with that was really, really difficult. So now it's more of a burden.
A
Okay. Yeah. Because it's two people.
B
Because it's two people. And I have chronic fatigue and.
A
You have chronic. Yeah.
B
And also because just finding caregivers that like. My mom almost went into an independent living facility a few couple months ago, and I talked to one of the administrators, and I'm like, well, the thing is, is, are we going to be able to have somebody that can help her? Because she can't do her site changes now. Like when we. Yeah, she stopped being able to do that about 17 months ago, so I have to do all that for her. And just. And the guy was like, oh, yeah, we have a lot of people in her situation. And then when I talk to the actual people that do it, they had no idea what to do with a pump. No idea. Not much idea about a CGM. A lot of people there do wear CGMs, but they're able to do them themselves. And it was just like, whoa, this is crazy.
A
I like when they're like, no, we know all about it. We mistreat people with type 1 diabetes all the time here.
B
Yeah. And then when it came down to it, they found somebody that could do it, but it was Gonna cost about $560 a month just for somebody to come in for, you know, like, 10 minutes and like, like a few. A couple of times a week.
A
Really? Well, what do you do? Are you going over and helping her?
B
Well, see, this was in a different town than I live in, and I would. I would eventually move there, but I'm just not ready to pick up and move right now. She had a friend there, and it would kind of be a fun place for her to be. Like, she'd have a lot of social interaction. And so it was. It wouldn't. I wouldn't be able to just come over and do it, or at least for a while until I, you know, packed up and moved.
A
Is there a big mental health component to this? Like, do you feel like you're not helping her as much or is it more of a strain on you? Like, what's this? The. I guess the psychological impacts. Your mom being in this situation.
B
The psychological impact on me?
A
Yeah, on you. Like, do you feel like you're.
B
You know what I mean? It's. It's too much. It's. And it's actually. It's been amazing, though. I'm grateful, but it has been a lot. It's not even just that is that I have to do all her financial stuff as well, and it's just kind of. And I have. You know, I'm wanting to work on some music right now, and so it's just hard to find time to, you know, balance everything. And I teach a little bit as well, so it's just kind of like sometimes I feel like I'm kind of circling the drain, you know, Suzanne's like,
A
listen, I'm giving up is what I'm. Yeah, I'm here to tell you all.
B
Yeah. No, I mean, it's just I'm. And also I'm. I'm kind of. I'm kind of sick of. Of self care for myself. You know, just. I have like, a special diet and all, and I'm just. I'm just like, ah, you know, like
A
too much to be thinking about constantly.
B
Yeah, it's just. It's just kind of too much. But. But. But my mom is a really delightful person, and so I'm grateful that I'm able to. And I was just talking to a friend of mine this morning, and she reminded me that if I didn't have diabetes and I hadn't learned a whole lot about natural medicine, I wouldn't be able to help my mom the way that I have been.
A
Yeah. I mean, there's high size, all this, but it doesn't change what a burden it is.
B
No, it doesn't. It doesn't. It doesn't take that away.
A
Are you anxious?
B
I can be, but I'm not usually. But I can be.
A
Okay. The burden of this is really about time and energy then.
B
Yeah. Yeah.
A
Okay.
B
Yeah.
A
You think if you had energy the way other people do, maybe it wouldn't feel the same to you?
B
Oh, yeah. Oh, yeah.
A
Okay. Because you do seem excited to help her, actually, like, happy to help her, I guess.
B
Yeah. Well, you know, most days. Yeah.
A
Yeah.
B
It's. It's like, you know, some days when I, like. Like my pump has run out and I've had to do, like, it only takes like 5, 10 minutes, but it's like. And then hers will run out or her. Her pump will, like, malfunction or, you know, just something like that. And you got to call customer service and, you know, it all happens at the same Time.
A
And I just had to go to the pharmacy yesterday, and they messed everything up so much that I got home and nothing was the way it was supposed to be, and I had to go back. And as I left the house, I said to my wife, I feel capable of dealing with this, but just in case things go sideways, I'll see you at the police station. And I. And I was. I was on my way out the door again. I know how you feel exactly. Yeah. Yeah.
B
Ex.
A
Do you have brothers or sisters?
B
I do. I have a brother.
A
Is he not helpful?
B
He's got a lot going on. He's got three adult kids in three different states, and he kind of leaves things to me.
A
The answer is yes, he's not helpful. You know, you're so polite, Suzanne. You're fine.
B
If I ask him for something. If I ask him for something, he'll. He'll try to do it, but he's not like, oh, how can I. You know, how can I do this? How can I help?
A
That's how I describe my marriage. After 30 years, if I ask her to do something, she'll try to do it. No, I hear what you're saying. Do you and your mom ever look at each other and are like, huh, look at us in this thing with this diabetes. Do you guys talk about it?
B
Yeah. Yeah, we do.
A
What's her takeaway of a life with diabetes, do you think?
B
Well, because she's only had it for, like, since she's been in her 50s.
A
That's a long time.
B
It is. It is time. Yeah. Yeah. So she was probably. I guess she was probably, like, 55 maybe when she was.
A
So, I guess 30 years.
B
Yeah, so she's had it for 30 years. I've had it for 34. So, yeah. What's her take? I don't know what her take is.
A
She seemed. Did she seem burdened by it prior to not being able to take care of herself?
B
You know, she. You know, it's funny because I got it first. And so she was just kind of. She just kind. And she. She was able to diagnose herself by kind of looking at me with some of the symptoms. So I think she just thought I was kind of like a. A good example to her. And so she was just like, well, Suzanne can do it, I can do it kind of thing.
A
Yeah. She just went on her way and did it. Okay. Hey, why did you think she had dementia but she didn't.
B
Oh, well, okay. So she thought she had dementia.
A
Okay.
B
And there was a certain political person that she Would look at the TV and go, I have what he has. And because of the look in his. On his face, one day she drove over to my house. I was going to help her with something with her insulin pump.
A
Okay.
B
And in the course of the conversation, it came out that she didn't feel safe living alone anymore. She didn't feel safe driving anymore, and she didn't want to drive anyway. And I was like, well, you can stay here. I mean, I didn't know what else to say. Like, stay here tonight. You know, a week and a half into that, and she had. She had scheduled herself for a cognitive evaluation.
A
Really? How old? At what age did this happen?
B
She was like 83.
A
Oh, just a couple of years ago. Okay.
B
Yeah, yeah, yeah. It was just like seven. Yeah. Like. Yeah.
A
Okay.
B
We finally. Well, in a week and a half of her living with me, she broke her arm.
A
Oh, my gosh.
B
And broke her arm. So that was really hard. That was. Talk about burden. That was really hard. You know, like, I had to help her with everything. So she got her cognitive evaluation in like October of that year. And they do this little test called a slums test, St. Louis something. It's like this little cursory, you know, cognitive evaluation. And she got 13 out of 30 on it. I'm kind of about natural medicine when you can be. I mean, I would never go a day without my insulin or, you know, there's a place for. But I also think a lot of things are over prescribed. The doctor said, oh, let's hold. She was on three blood pressure medications.
A
Okay.
B
And so I took her off two of those, and now she only takes the other one once a day, where she was taking it twice a day. And her blood pressure's fine. I took her off a statin drug and she was shuffling her feet. She does not shuffle her feet anymore. When she moved in with me, she was not interested in food. She was not interested in reading the things that she loves. She just didn't care. And over the course of time, she got another slums test in March of last year, and she got 19 out of 30. And then last October, she got another one. She got 27 out of 30, which is pretty much normal.
A
Is this the blood pressure med? I mean, first of all, this is. This might sound crazy to people, but this is not incredibly uncommon for older people to go to a doctor. They put her on a blood pressure medication, then they go to another doctor, they add a med, but don't take the other one away.
B
Yeah, yeah, yeah, exactly.
A
Right?
B
So I think it was just. Maybe she was just over medicated. And also, you know, I help her with her food, you know, and I help manage her diabetes. Like, her A1Cs have been great lately. Like, they've been like six something.
A
Wow.
B
Yeah.
A
I'm sorry. Does this whole process of being with her make you start worrying about yourself as an older. Because you don't have a you when you get older.
B
Exactly. No, I don't. And, yeah, and I don't have kids. And, yeah, I don't have kids to take care of me. Yeah. So. Exactly. Yeah, definitely. Definitely.
A
To answer your question, yes, I'm scared out of my mind. Thank you. Yeah, well, yeah, no, I hear you. If you left her to her own, like, what would stop her from taking good care of herself? Is it dexterity? Is it clarity? Like, what would stop her from taking care of her diabetes by herself?
B
Well, I think she said with the pump, it's like her eyesight, you know, like, being able to see the. You know, and she does wear glasses, but, you know, like, her eyesight kind of, she said, changes. She keeps all her glasses because she had a doctor tell her, keep all your glasses because your eyesight will change. Like, even if you get a new prescription. But still, like, it for her to, like, living alone was just hard for her. I mean, we were in touch. Like, we spent time together. It wasn't like. Like, I just left her out there on the farm, but, like, we ate together frequently and is it.
A
Is it strange for you to still be this in touch with your mom, or do you like it?
B
I really liked living alone. I really did. I really did. But I don't know. I'm grateful. I think it would be great. She may get another apartment in this building. That might be good. I'm not sure if I want to stay in this building. I want some green space, too. Fortunately, I have an extra bedroom. What if I didn't?
A
Yeah, you'd be on the sofa and your mom'd be sleeping in your bed.
B
Yeah, exactly. Exactly.
A
Hey, you live in Iowa. Have you tried meth for all these problems, or is that not something you've gotten into yet?
B
Meth? Why is that? Why is meth and Iowa thing?
A
I don't know. Isn't it?
B
I don't.
A
Listen, if I'm just going to generalize and you guys want to hold me down to all the details, this is going to be a problem making this podcast. Okay.
B
Yeah. You need a fact checker.
A
Well, let's not get crazy. I guess I was leading into like, how did you avoid medicating yourself other ways? Like through your life with all this, like, how come you're not a drinker? Right. You don't get high? Like, why do you not?
B
Well, friends. Prayer. A lot of prayer.
A
Yeah.
B
A lot of friends that. That you know are committed to the same ethic. Yeah. But most of my close friends don't live in my state.
A
They're in Boston.
B
Yeah, they're in Boston or in Virginia or Texas or.
A
Yeah, yeah. People move around. What do you do for a living?
B
Most of my income is disability, but I still teach a little bit of music and I'm learning music production.
A
Oh, nice. Throughout your adult life it's been mostly disability?
B
No, no. I got on disability when I moved home to Iowa.
A
Okay.
B
But when I was in Boston, I worked for a non profit and I went around to different schools and taught music and produced big shows with kids and.
A
Oh, wow.
B
So I look back and I'm like, how did I do that? I mean, I still in Boston for like 10 years with. With chronic fatigue at least. Yeah, yeah.
A
Just kind of power. Do you feel like you were powering through it?
B
Oh, yeah, yeah. I mean, and I had to pace. Like, I couldn't. I couldn't work enough. Fortunately, I worked at a job where I contracted, so you didn't. You weren't there, you know, five days a week, you would maybe be at some places two days a week and maybe not for the whole day, so. But I would. I was not able to keep up enough contracts to really float the whole thing. Yeah, yeah.
A
Boy, that's.
B
Yeah.
A
It really is just terrible to be impacted so much by something like that.
B
Right.
A
Yeah.
B
So I. Right now I have six private students. And last month I subbed online for a colleague and it was just three students. Absolutely delightful. But by the end of the month, I was a mess. Just three. Like, it was about an hour and a half of extra time at, you know.
A
And it exhausted you and I was a mess.
B
Yeah. By the end of the month and I'm just like, ugh. Yeah. So. And I love teaching. I absolutely love it, but I just have to really pace myself.
A
Yeah. How long does it take you to bounce back when once you get kind of like, not burned out's the wrong word. Once you get exhausted.
B
It depends. Like, sometimes it'll take a day, sometimes it'll take like. Okay. So I was subbing for my friend in like towards the end anyway. Like the whole week after, I had like one and a half. I counted. I had like, one and a half good days that whole next week, like, it was. It was a mess.
A
Describe to people the difference between a good day and a bad day.
B
A bad day, you feel like there's this magnet pulling you towards your bed. Like, yesterday was. Saturday was kind of a bad day. And I, I. I actually dragged myself out. One of my students was in a musical, and I dragged myself out and went to it, but the whole time, I was just really, like, I just wanted to be in my bed and. And just not having to interact with people and. And I can't explain it, but not depression.
A
It's not. You don't feel depressed. You feel exhausted.
B
You. You kind of do, but, you know, it's a. More of a physiological thing.
A
Huh. So you need to, like, get ramped up somehow. Like. Yeah, like, your battery.
B
Your battery's low, but that makes it worse. Like, when you ramp yourself up, it's like you're using energy that you don't have, and so it kind of makes things worse.
A
Oh, you get, like, an adrenaline crash afterwards.
B
Yes, yes.
A
Okay.
B
Yeah.
A
Do. If you do ramp yourself up for something, then the. You pay. You pay harder at the end.
B
You pay. You got to pay the piper. You. You have. Yeah, that's the hard thing about it.
A
Nothing's ever helped. There's not a moment where you thought, like, as crazy as it sounds, like, you know, the. The oddest thing felt like it had an impact for you.
B
Not permanently, no. And I'm very quick to pronounce myself cured if I have a good day. I'm like, this has all been in my head all these years.
A
It's figured it out. It's green beans.
B
Yeah. It's all been in my head. So there's nothing that's. That's like, oh, yeah, I am consistently friends paid for me to do an adrenal program and lots of different supplements, and I felt like I was. I was very sensitive to a lot of the supplements, even, you know, and they encourage you, like, take it really, really, really, really slow, you know?
A
How about your iron? Do you do full iron panel ever?
B
You know, I used to have low iron when I first started all this, and I. But that didn't even help. I mean, I would take iron, and it didn't.
A
So you had a moment where somebody's like, oh, you're anemic. This is going to help you, and they jacked you back up, and then nothing changed.
B
Yeah.
A
How did you get your iron back up? They give you infusions?
B
No, they just tablets and then I think when I went through menopause, my iron was fine again, you know?
A
Okay.
B
I haven't had problems with iron, but I probably should have my doctor test that. I'll see her at the end of the month.
A
Yeah, make sure they test your Ferritin, too.
B
Yeah, no, she's a really smart doctor, and she doesn't do the just cursory stuff.
A
Suzanne, listen, I'm always interested when people say stuff like this, like, she's a really great doctor. You have a lot of problems. I don't see her fixing any of them.
B
Yeah, I know. I know.
A
So you mean she's thoughtful, thinks outside of the box, just trying to help you in ways other people wouldn't, etc, that. But she hasn't gotten to, like, the. The promised land where she said something that ended up being valuable. Do you think there's nothing that will help?
B
I don't know. I. I mean, I. I don't know. I hope there is.
A
But what keeps you looking, like, what keeps you motivated to keep hoping and, like, thinking, like. You know what I mean? Like, where's the hope come from that makes you think, like, I'm cured. I figured it out. Like, where do you get that from?
B
I don't know if this is a hope for a cure, but I don't know. There's a fragment of a psalm that says, why are you downcast, oh, my soul? Why are you so disturbed within me? Put your hope in God, for I will yet praise him. And I just. You know, whether I get better or not, I know that God is giving me something to hope for, whether it's in this life or the next. I don't. I don't. That's all I can say, really.
A
No, you find. You find your hope through faith.
B
Yes.
A
Yeah.
B
Okay.
A
Well, listen, I. I would think you. You deserve it wherever you can get it from. So that's awesome that you found it somewhere, because I. I can imagine people would be. I mean, this is a thing I think about a lot, right? Like, with, you know, the people around me and the people that listen to this podcast. You know, a lot of you are on difficult paths that don't always end with, like, some successful outcome, and you still have to get up and do it again and, you know, you have bouts of time where you feel better and worse and, you know, like, how do you keep going when the worst times come and how do you enjoy your life when the good times are there without thinking, oh, it's just going to get bad again? That's A lot.
B
You know, it is.
A
Yeah. I mean, there's a lot of. You can see even with like, like you've. You've mentioned money a number of times. Like, I don't have money for that or anything. Like, you know, you're watching Selena Gomez out in the world, right? She has, what, lupus or something like that?
B
Like, she's got her own. She's got her own Oreo too. Did you notice that? She has her own, what, Oreo store the other day. Yes, I was in the grocery store the other day and they had Selena Gomez Oreos.
A
And I'm like, well, I didn't know that, but that makes my point better. Like, she's got.
B
Yes, you've made it. When you've got your own Oreo, you have. You.
A
When you have Oreo money to pay for your treatments is. What I'm saying is you're getting great. Like, you know, you're probably getting cutting edge help. And I've still seen, I've seen her struggle over the last number of years pretty heartily.
B
I didn't realize she had lupus.
A
Is that what she. Listen, I might have made that up. Hold on a second.
B
I think you just said that. I mean, I'm just, I'm not familiar with her music or I know she's a. She's a. Like a pop star, but I don't. I'm not all that familiar with her music.
A
Hold on a second. Let me just make sure I'm right about that. I didn't just give her something.
B
I think you said, you said. Yes.
A
Well, do you not watch Only Murders in the Building?
B
No.
A
Oh, my goodness. Okay, so. So she does have lupus. She's had a kidney transplant because of kidney failure.
B
Whoa.
A
2020, she publicly revealed she has bipolar disorder, anxiety, depression. But the lupus, specifically, like, there's a lot of like. So if you watch only Murders in the building, you'll like, watch a season of it, and there's a version of Selena Gomez that's acting in it. And then the next season of it, she looks like she might weigh 40 or 50 pounds more. And then in the next season, it's gone again. And I think that's all the lupus and the inflammation and all that stuff.
B
Wow.
A
My point was, is that, like, when you've got her money and you still can't overcome stuff like this.
B
Exactly. Like, maybe it's not a matter of affording being able to afford treatment. It's just life.
A
Yeah. Maybe this is just. And you're 62 so I think we're forgetting that because, again, you have a very youthful voice and way about you. But at 62 years old and you've been at this for as long as you have been. I mean, at what point do you just say to yourself, without being sad, this is it. Like, this is my role. Like, so just, I'm going to do the best with it I can and stop. Like, you know what I mean?
B
Well, I mean, sometimes that's why I'm not like, oh, let's try this. Let's try this. Because I'm just, like, I just want to. I just want to wake up and work on a song or something or, you know, like, just do my thing and not have to, like, constantly be thinking about, you know, I had kidney issues a couple of years ago. I was able to get back to normal kidney function. So, like. Like, you talked about Selena having, like. It's just. It's just there's always something. I feel like I'm playing Whack a mole, you know, it's like, let's dig
A
into that for a second. Cause I think that's really interesting, the idea of, like, you're trying to live. It probably feels like you're always in college. Meaning as soon as I do these things, complete these tasks, then I get to go live my life.
B
Yeah. Yeah, right.
A
Except that never stops happening.
B
Yeah, exactly.
A
You don't go to therapy.
B
I had a therapist for a while. I didn't feel like she was helping. I need to find another one. But who even has time to go?
A
You're like, when am I doing that?
B
Yeah. Yeah. It was like, another thing. And I'm like. Like, I'm so burnt out on self care. Like, I'm just.
A
Isn't that funny? Like, seriously, there's a real conversation in there. Because if self care, which is the thing that's supposed to elevate you and help you do better, is the thing that's burning you out, then where's the tipping point between the value and the harm?
B
That's why I'm trying to figure out.
A
Oh, you thought I was gonna help with that?
B
Not necessarily, but I can't even remember
A
to put my face cream on. Arden's like, you're wrinkly if you just use cream. I'm like, how am I supposed to remember to do that? She goes, it's on the sink. She's like, when you get out of the shower, rub some of it on your hands and put it on your face. And I go, it seems like a
B
lot yeah, no, there's. There's so many crazy things I have to do to just keep going. And I'm like, oh, yeah.
A
You know, I think that's important that. I'm glad that came up, actually.
B
Yeah.
A
Yeah. Because everybody's in that. I think everyone, to some level or another is in that space where they're trying to find the balance between living and staying alive. Right. Like you're trying to, like. Like, how do I stay healthy without giving away every ounce of who I am to that process? Because then am I not. Then I don't have time for anything else.
B
Exactly, exactly. I'm trying to start releasing music and I released my first song last year and I've got songs in the pipeline and I'm just like, you know, it's just trying to figure out how to.
A
What kind of music. Mumble rap, what do you do?
B
I'm pretty eclectic as far as genres. Most of it is Christian music, but styles are fairly eclectic.
A
How do you release it? Like, through like.
B
Like Spotify, YouTube. There's a whole process and I've done it once. Now I'll have to, like, revisit how to do it again once I get another song ready.
A
Right. How long does it take to put a song together?
B
It depends. I guess it depends if, like. Like I'm new at the production process and it took me like, from like August through April to do my first one. But. But other people, you know, it's just with everything else going on in my life, like, that was. It just took a lot longer than it was supposed to.
A
Yeah, well, right, because every. Everything is extra.
B
Right, right, right, right. Like, I try to work in little 15, 20 minute increments, and then, you know, when I finally put. Put it out, it took like, like there was hours of time just, you know, trying to work through, you know, like the distributor and figuring out all that stuff online. I went through a, like a. Accelerator mentorship process to do that. But even with that, it was. It took a. It took some time.
A
I'm sorry, I have to do something here. This is. We don't allow political, like, posts on the Facebook group.
B
Right.
A
Because it's. I know this feels like a left
B
turn because there's no. You don't have to explain.
A
Yeah, yeah, because. Well, because it just. It'll devolve no matter what. And people like to put something up that's very political and then say, this is not political.
B
Exactly.
A
I'm putting it up there because it's very important for people with diabetes. And I'M like, it is incredibly important for people, diabetes. It doesn't make it not political or. It doesn't mean it's not going to be five minutes from now when everybody starts yelling at each other about it. And this is a. This is a community for people to support each other with their diabetes, but not for them to argue about, you know, politics. So.
B
Yeah, yeah, no, you don't have to explain that to me.
A
Well, yeah, it's nice.
B
It's the world we live in. Like my.
A
Yeah, it's my favorite thing that people do. They're like, okay, listen, this isn't political, so don't talk about it that way. You know what? Politician really sucks because they're not helping people with diabetes. I'm like, yeah, yeah, that's political.
B
Yeah, it's very funny. Yeah, just put a popcorn gif.
A
I don't know. I'm not getting involved. I know my group runs very well for a very specific reason, and it's we, politics, religion, pretty much. You know, we don't go down those roads. And it's tough in times like this. Like, I don't have any trouble talking about it here, but it's tough in times like this. There's a lot of people who want to stick up for eyelet cell legislation and everything, and I'm. I'm with them. I think that's great. But I. You can't start making a pod. A post about it in the Facebook group. That doesn't work that way, so.
B
Wow.
A
Yeah, it sucks because it's a weird line to have to draw when you're me, and then I get yelled at for not being something. You know what I mean?
B
Yeah, right. Well, we. We have that dynamic also in my family, too, so it, like, it does. Hasn't really helped. There's some political spectrums in my family, of course.
A
And then what happens? It gets in the way of, like, personal relationships and.
B
Yes, yes.
A
Well, that's my point. If none of you knew each other's politics, you wouldn't be having any of those other problems, so.
B
Exactly. Exactly.
A
At the very least in a Facebook group, we're going to avoid it. That's pretty much it. Okay, Is there anything we haven't talked about that we should have? Anything, because I don't want to shortchange on and make sure.
B
There are tons of stuff I'd love to talk about, but let me just say my mom. So she had a formal evaluation with her dementia in January, and she. It's so it's March now, and they they decided she doesn't have dementia because she's just a normal 85 year old. But I think she's. She's transformed a lot since she's been living with me. And she. She's. Now, she loves to read. She can walk to the light. She doesn't shuffle her feet anymore. She can walk to the library, buy a book or check out a book or there's a little bookstore over there. And she. She prefers buying a book. And so, like, she's. She's really transformed, but it's still like, I wish I had others that could care for her and her diabetes. Yeah, that would make my life a little. Little easier.
A
Hearst too, maybe. I'm sure she has some level of guilt around having you take care of her.
B
Yeah.
A
Yeah.
B
She's on Medtronic closed loop. And the CGM right now that we're using is a little bit complicated as far as the. What. How to.
A
Is it the one that recharges? Like, do you have to plug it in sometimes?
B
Yeah, you just plug that. But also the procedure of putting it on is a little bit crazy.
A
They have the new one.
B
I know, I know. So her doctor has already ordered that, so. But we just got a shipment of the old ones, so when we work through that, we'll start with a new one.
A
How many is in the shipment of the older model?
B
Three months worth.
A
Jesus.
B
Yeah, she just called him up and
A
say it didn't come. And I know.
B
I mean, we might be able to start earlier, and I probably will if I decide to travel soon. Like, sometimes I'm just too tired. But I want to start training her to redo her infusions, to be able to put on her own infusion set. But sometimes her brain will glitch a little bit. So it can be. One time when I was traveling, she was like, oh, yeah, I had to take a shot. And I was like, it took the whole syringe, you know, for three units. I'm like, mom, you put in 30 units. You didn't do three units. Yeah, and so she was okay. She was able to eat enough to get through it. But so there's, you know, like, it's not like she doesn't have dementia. And I don't worry about her doing something crazy like wandering. But it's still. She probably shouldn't be alone for. For too long.
A
No, I hear you. I. I mean, my mom lived into her early 80s, and there's just parts of being that age that are just come with being that age. Like, I, you know, My mom had a cancer at the end of her life, so there's like some scans that she got done. And I remember, you know, they did a brain, like a brain scan. And, you know, just looking at the report, just, you know, the way the report is written, it said something about like, frontal lobe deterioration equivalent with age. Yeah. And you think, oh, that's not a thing you think about when you're younger. Yeah. You know. Yeah. So.
B
But, you know, our bodies aren't meant to. Well, I mean, they were meant to last forever, but they don't. And it's part of life.
A
Yeah, no, it really is. So she's experiencing things that are. Just commiserate with being her age.
B
Yes.
A
Yeah. And then having to deal with diabetes on top of all that. Yeah. Well, she's very lucky to have you. That's for certain.
B
I'm lucky to have her. Oh, the other thing too, is she. She does a lot of cooking now. Like, she didn't care about food anymore. Now she. On the days I work, she makes dinner. She does all the dishes. She does a lot of the laundry, you know, so it's. She's been great.
A
Oh, let's go. That's awesome. I'll take her here if she's going to cook and clean. Ship her over. I'll take care of her diabetes. I get into trouble.
B
Yeah. Hey, there's an idea. Next time I do.
A
If the end of this podcast was just me taking on older people with type 1 diabetes to get free cooking and cleaning out of them.
B
Not. Not a. Not a bad strategy.
A
Not a. I don't know.
B
She makes a real. She makes a really good pork chop, I'll tell you. Yes.
A
It might be cheaper for me to just like hire a cook or to take care of a person in their 80s.
B
That's true.
A
That's some. But you have a really interesting story. Is there any. Did we miss anything that you think really solidifies your story or do you think we hit the big parts?
B
Nothing that necessarily, you know, the. Lots of. Lots of. All kinds of things, you know, that are. I just thought it was really interesting that I was diagnosed in Boston. That was kind of a cool thing. Because of access to Jocelyn. I worked at Camp Jocelyn for a summer. Just lots of. Lots of different little things, but nothing,
A
you know, you've had touch points with. With. I mean, there's a lot of research in hospitals in Boston, for sure.
B
Yeah. I remember when the DCC10 first came out and going to a. A big thing at a hotel where they announced the you know, the findings of the DCC 10. And, and I was very newly diagnosed at the time, so that was like a really good way to set my mind. Like, okay, self care really does. Does make a difference.
A
Yeah, I. I hear you. So tell people a little more about it. The DC10.
B
Well, DCC10, it was this big study that they did to find out if, if, you know, the way you cared for yourself would make a difference in. In long term complications.
A
Okay, and, and what did they come up with?
B
Well, I thought she. I thought they. You've mentioned it before on the podcast.
A
Have I? I mean, honestly, you heard me earlier say that I really don't know a lot about what I'm doing, so. Go ahead.
B
I've heard you mention. But. But yes, absolutely. You know, like keeping your A1C down, keeping your blood sugars normal as possible. Yes, it. It really does. You know, it's. It's not like a foregone conclusion that, oh, I have diabetes, so of course I'm going to have all this litany of stuff.
A
Right.
B
So, yeah, it was, it was a nice way to, you know, have my mindset at the, the beginning of the of. But. But your podcast really helped too. Like, I was kind of like, when I first moved home, I was just. I was tired, I was looking for stuff to listen to and I was, you know, resting and I was like, I wonder if there's any diabetes podcasts out there.
A
Well, yeah, the one thing I feel sad about in our interview today and that I would like to return to before we say goodbye, is that before we started recording, you were super excited to talk to me. And, and then that love and adoration did not come out with as vociferously as it was coming out before we were being recorded. So do you want to tell all the people why this is such a special moment? Oh, why am I so great? Tell everybody that at the end. Suzanne.
B
Well, I mean, I just. I just. I think I opened. I said, I'm talking with the Scott Benner. You know, I felt like. I feel like I know you because I've listened to the podcast so much. You know, like, like, it's funny when you listen to or read an author, you think you know them, but you don't really. But, but it's like, wow. I mean. But yeah, I think you've helped me. You've helped a lot of people.
A
Oh, well, that's very nice. How do you think the podcast has helped you?
B
Mostly, I think a lot of the, like, the practicals I can't even think of specifics, but I know when I was first started listening just a lot of the practicals, and I feel like you gave me permission to not have to write everything down.
A
Oh, really?
B
Yeah, like, they were like, oh, you have to write all your blood sugars down and you have to write down all your carbs and count them all. Exactly. And, you know, and maybe I'd do better if I did that, but it just. I just never did well with all that stuff. And, you know, like, we were talking about trying to live your life.
A
Yeah. Lessen the burden.
B
Who has time to, like, write all down everything they eat and measure it just exactly. And.
A
Well, what do you mean you could do better? Like, what. What are your outcomes? Like right now? I mean, your mom's got a great A1C at 85. So what's yours?
B
I'm. I'm like, I hover around like 7 1, 7 6, 9. I mean, you know, probably could be better sometimes I get insulin resistant in the mornings usually, and I probably need to just tweak something in my basal. But. But yeah, I mean, I mean, just. I just like hearing people. Because you just don't hear people talk about this stuff every day.
A
Yeah, that. That ends up being the. I think one of the values of the podcast is that it pulls together a lot of voices that you are hard to find in your regular life.
B
Right. And people that are trying to live their lives, too, that have, like, you know, normal lives as well, but they're trying to live them and. But then they have to deal with this on top of it.
A
Yeah, no, I hear you. Yeah, well, I'm glad that it's been valuable for you. Also, I think your A1C sounds terrific. What system are you on?
B
I'm on a closed loop tandem.
A
So, like, are you using the T Slim or are you using the Moby T Slim? Okay, and you have like. Would you say like a seven?
B
Yeah, around. I have her around seven.
A
Oh, your mom around seven. But where are you at?
B
I'm. I'm around seven. My mom is like six something, usually.
A
Because your mom eats differently than you?
B
Well, she actually has kind of gone a little lower glycemic since she's been with me. But. But she can eat other things and her diet's more expanded than mine.
A
Okay.
B
She can eat dairy. I wish I could.
A
What happens when you have dairy?
B
I get earaches and sore throats.
A
Earaches and sore throats. Okay. Yeah. There's a lot going on for you, huh?
B
Yes.
A
Do you have a lot of allergies?
B
No.
A
Okay.
B
Not really, but a few things, but not nothing. Yeah.
A
Okay. All right.
B
Like, I'm allergic to echinacea, and I'm allergic to Valerian, and, you know, like, weird stuff.
A
It sounds like you're allergic to economics and the metal that the swords are made out of on Game of Thrones is what I just heard. But,
B
yeah, that.
A
That. Yeah, the Valyrian steel really gets to you. Yeah, well, I don't know. Trust me, I don't know. But Valerian steel makes a lot of sense to me. Because you're strong. Listen, I'll tell you why, and then I'll let you go back to your life.
B
Okay?
A
You're obviously a strong person. You're going through a lot. You're being pulled down by a lot, and I do not hear it in your voice or in your actions. You're helping an elderly parent who also has type 1 diabetes in a society that does not really always do that for people. And, you know, so it's not set up that way, and it's an extra effort there to help there. You're doing it on a low budget, and that's just another example of your desire to be valuable and to work hard at this. I mean, every answer you gave me sounded like an answer that is born out of a lot of experience and the knowledge that there's no real other answer except keep going. And, you know, I think that's a pretty steely attitude to have. So you're getting Valyrian steel, like it or not. I'm sorry. And if you have not watched Game of Thrones, go watch it. You'll enjoy it. It's excellent.
B
I probably won't.
A
Why not? It's so good. I mean, when you're laying in bed, watch Game of Thrones.
B
I don't. I don't like to. You know, I don't watch a lot of TV anyway.
A
Don't ruin this by telling me you don't love television. The greatest American art form.
B
That's. That's a content. My mom wants to have a tv, and I'm like, no, mom.
A
You won't let your poor mother have a television at the end of her life. What is wrong with you? I'll buy her a tv.
B
It'll be great when she gets her own apartment and she can enjoy that. I just. I. I just can'. I just can't have a TV going on.
A
Oh, my gosh, Suzanne, I've changed my whole opinion of you now.
B
Okay. Also, like, I Do, like, watching occasional things.
A
Like what? Tell me what you do like on television.
B
What do I like to watch? We like to watch All Creatures Great and Small. Every Sunday. We like to watch the Chosen. I like to watch House of House of David, which is.
A
This sounds like is the religious programming.
B
It is. But House of David, you'd like. You'd probably like House of David.
A
What is it?
B
It's a story of King David. Sometimes I've said to myself, oh, I see it.
A
It's on Amazon Prime.
B
Why don't they put this stuff on primetime tv? Because this is. This is pretty racy stuff, you know.
A
I gotta tell you, Susanna, I watched an episode of Fear Factor the other night that was awesome. So I don't think I'm gonna be digging into the House David. I am watching. Yeah, I don't think our television probably doesn't jive well. Like, I do. I. I watch bad TV through the winter. So, like, good tv, bad tv. I don't know how to. Like. I'm watching paradise right now on Hulu, which I'm enjoying for some reason that I can' my head around. I think I just got done shrinking. Season three. My wife and I just watched Task Is it Task on hbo, but it's almost baseball season. I'm just going to put baseball on television for the next nine months and then I'll get back to it at some point. But the once mighty King Saul falls victim to his own pride. This is House of David, in case anyone's interested. It's on Amazon Prime.
B
It's good stuff. I have a. Yeah, I have a friend that's doing editing for it. It's good stuff, I think.
A
Listen, I'm not arguing with your style.
B
Oh, but. But my point too is I can't. I. Sometimes I can't watch TV for very long.
A
Why?
B
I'm that sensitive. My.
A
Are you serious?
B
Yeah, I'm serious. I. I can't. Like, I'm too tired to watch tv. Like, it's just. It's like. It's. It's a whole other thing to do. Thing? Yeah, it's like, oh, kidding. This. It's gonna drink.
A
Paying attention is exhausting, I guess. I mean, it's your life. You'd have to answer. I don't know exactly, but like. Like the actual. Like. Huh. Well, that's interesting, isn't it?
B
Yeah.
A
Well, maybe if you're watching Fear Factor, it wouldn't feel that way.
B
That would probably ramp me up. And I.
A
Last week they made them eat pies made out of Bugs. It was horrifying. There was wretched.
B
Yeah, I think. I think I'll pass on that.
A
We watched it while Arden was baking. It was hilarious because Arden was like, turn it down, turn it down, turn it down. I can't. She's like, don't. I don't want to hear one of the pies was made out of scorpions. I just want to say.
B
So was she making pies?
A
She was making cookies at the time.
B
Okay, okay.
A
For her boyfriend. Yeah, it was nice. Okay, I'm gonna let you go. This was fantastic. Thank you very much for the time. Hold on a second though. I'm tell you a couple of things about how it comes out and everything. So hold on one second.
B
Okay, great.
A
Thanks. A huge thanks to my longest sponsor, Omnipod. Check out the Omnipod 5 now with my link omnipod.com juicebox you may be eligible for a free starter kit. A free Omnipod 5 starter kit at my link. Go check it out. Omnipod.com Juicebox terms and conditions apply. Full terms and conditions can be found@ omnipod.com juicebox the conversation you just enjoyed was brought to you by usmed usmed.com juicebox or call 888-721-1514. Get started today and get your supplies from U.S. med. If you've listened to any number of podcasts or maybe watched a year YouTube video, you're very accustomed to listening to the creator of that content. Ask you and sometimes just outright beg you without any feeling of self respect for you to follow, subscribe, share an episode. The reason that happens in podcasting specifically is because podcast players don't have a sophisticated Recommendation engine like youtuber TikTok does. They can't watch, listen or behavior and then give you content that you might like. Word of mouth skips that line completely. It's an instantly expanding reach engine and really the only thing I've ever found that helps to keep the juice box podcast growing. So subscribe and follow because that the algorithm understands. Set up automatic downloads. Listen to the show but share it with somebody else. Leave a five star review, review, make it a thoughtful review that the algorithm can understand. I really appreciate the time it takes you to do those things and I hate that I have to say this to you because I feel like an idiot. But subscribe and follow. Tell a friend please and thank you. If you have a podcast and you need a fantastic editor, you want Rob from wrong way recording listen. Truth be told, I'm like 20% smarter. When Rob edits me. He takes out all the gaps of time. And when I go and stuff like that, and it just. I don't know, man. I listen back and I'm like, why do I sound smarter? And then I remember because I did one smart thing. I hired Rob at wrongwayrecording. Com.
Date: May 7, 2026
Host: Scott Benner
Guest: Suzanne (living with Type 1 Diabetes & Chronic Fatigue Syndrome)
In this deeply candid conversation, Scott talks with Suzanne, a 62-year-old musician and lifelong learner, who has managed Type 1 Diabetes (T1D) for 34 years and Chronic Fatigue Syndrome (CFS) for 24 years. The episode offers an honest look at navigating illness, the compounding challenges of caregiving for a parent with T1D, strategies for self-management, and Suzanne’s ongoing quest for hope, balance, and vitality. The discussion is peppered with practical tips, humor, philosophical musings, and the realities of “self-care burnout.”
Diagnosis and Family Background
Personal Life
Mom’s Health and Suspected Dementia
Day-to-Day Burdens
Sources of Hope
Coping and Self-Care Burnout
On Stress & A1C:
“It was very obvious, the difference between my A1C when I was trying to make the relationship work and when I had ended it.” – Suzanne [08:21]
On CFS:
“With chronic fatigue...you don't get your life back.” – Suzanne [11:48]
On Self-care Burnout:
“I'm kind of sick of self-care for myself... I'm just like, ah.” – Suzanne [36:12]
“If self-care...is the thing that's burning you out, then where's the tipping point between the value and the harm?” – Scott [55:08]
On Mutual Care:
“She's been great...she makes dinner, does all the dishes, does a lot of the laundry, you know, so it's. She's been great.” – Suzanne [63:34]
On Hope:
“Put your hope in God, for I will yet praise him...whether I get better or not, I know that God is giving me something to hope for, whether it's in this life or the next.” – Suzanne [50:38]
On Experience:
“Every answer you gave me sounded like an answer that is born out of a lot of experience and the knowledge that there's no real other answer except keep going.” – Scott [71:13]
This conversation is marked by humor, openness, and empathy, making the depths of chronic illness and caregiving relatable without sugarcoating the difficulties. Suzanne’s story is one of resilience (“Valyrian Steel”), finding meaning through faith, and the pragmatic struggle to balance life, health, and caretaking. As Scott observes, her “steely” attitude and willingness to keep moving forward—even as she questions the constant quest for answers—offer encouragement for anyone walking a similarly complex path.