#1565 The Great Taboo
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Noor’s sudden DKA diagnosis sparks battle to survive, learn carb counting, and embrace tech while raising two young kids.
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Scott Benner 0:00
Welcome back friends to another episode of The Juicebox Podcast.
Noor 0:14
So hi, my name is Noor, and I have been a type one diabetic for a year and four months. Now, if
Scott Benner 0:23
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Noor 1:52
so hi, my name is Noor, and I have been type one diabetic for a year and four months now.
Scott Benner 1:59
Wow. Very recently, how old are you? I'm 34 Oh, so you were just diagnosed. What like end of your 32nd year? Yeah,
Noor 2:10
like January 15 of last
Scott Benner 2:14
year. No kidding. Oh, wow, yeah. How did you make it to me so quickly? I
Noor 2:18
was just searching on YouTube about like, tandem Moby and OmniPods, when I was just, like, diagnosed, checking, like, all the pumps out there, and I found your podcast on YouTube, and I found out, like, there is a Facebook group, so I'm like, I'm on it right away, so learning and giving like advices for people when they need, like, adhesive, or like over patch or Things like that.
Scott Benner 2:41
Just most of the things that come up in the beginning that you're just like, I would have no way to know about any of
Noor 2:46
this. Yeah, yeah, true. Oh my goodness. If, if I tell you what, I hate the ideas I had about, like, T, 1d, when I first was getting diagnosed, you will laugh.
Scott Benner 2:55
Well, let's laugh. So first, let's figure out how you found out you had type one. And then we'll, we'll figure out some of the things. She
Noor 3:01
thought, Okay, so my sister was preparing her wedding, and my parents came over. We were just like, happy to prepare for the wedding and everything. And it happened on November. After November, I started feeling like, really tired. I go drive my kid to school, and I can't remember that I drove her, and I would sleep. And then my mom, after my sister's wedding, she went, and she was sleeping over my sister's house for 88 days before Christmas of last year. So I'm like, I called my mom and I told her, like, I'm not feeling good, and I wish you didn't leave to my sister's house. And I'm I'm just like, not myself, and I want to sleep for a year. So my mom was like, No, don't worry. You're good. Maybe you're just, like, really tired, or you got used that I'm there, like, helping you with the kids, and now you're sitting with the kids by yourself. I'm like, okay, whatever. So one of the days I was getting, like, really sick. I don't like sweets, and I would want to eat sweets, and after I eat sweets, I throw up. And I was just, basically just sleeping in. No one can wake me up. And my mom would every time come and just check on me if I'm breathing or not. I would just, like, forget things if I'm awake. I can't take my shower by myself. I can't even, like, use my legs properly to walk. I would go and pick up my daughter from school with my pajama in my school slipper, sorry, my house slippers, just because I can't, like, lift my legs to put it on the like, winter boots. To that point, how
Scott Benner 4:32
long did this go on for? One month and a half now, looking back, if you were in the mind you're in now, how long would you have let it go on for?
Noor 4:41
Oh, no, right away I would know, like there's something wrong with me. So there's part
Scott Benner 4:45
of what's happening to you that stops you from assessing what's happening to you. Yeah,
Noor 4:49
and I had a problem too. I was losing a lot of weight, and this is indicate that you have T 1d but the problem is, before I was diagnosed with T 1d I had. And sleeve surgery, which means I was not that fat, but I didn't like the way I look, and I was not feeling happy about the way I look after having like, two kids and going to the gym, I'm not losing weight or whatever. So I told my husband, like, see, I'm I'm not in the mood to go buy like, X large clothes or large clothes, and I'm not happy with the way I look. So don't tell me to go out. Because every time he tells me, let's take the kids and go out somewhere, I would cry. So he's like, Okay, let's do the sleeve surgery and check how much is it, and we can do it if this is what will make you feel happy about yourself. Okay,
Scott Benner 5:33
so you got that gastric sleeve? Yes, how long before this whole time of being diagnosed with type one? Did you seven months? And had you been losing weight from the surgery?
Noor 5:43
Yeah, I was losing weight, and I reached target goal of my weight, and after that, I was just going down very fast. I'm from the Middle East, so we do it with kilos. I'm not like good in calculating it with like pounds, but I reached from 60 kilos, which is around like 160 pounds, I think, to 46 kilos in that seven month period. No, in the one month and a half, oh, oh my gosh.
Scott Benner 6:13
Oh, so you had lost some already and been happy with your weight loss exactly then this larger piece happens in just those four weeks. Yeah, did you think, oh gosh, the surgery is still working too well now? Or what did you think when you were thinking about your weight?
Noor 6:28
My mom was accusing me that I'm not eating at all, just to because some people, when they do the sleeve surgery, they think like, I'm gonna starve myself. I'm not gonna eat so they are scared to gain weight. And all what they did and went through was for nothing I see. So basically, this is my was not my point. I tell my mom, like, I have been eating like a cow and drinking water like a cow since I'm just like, feeling like, you know the like, the dka in the beginning, yeah, I'm like, I'm eating and I'm drinking more than I did just like, few weeks ago. And I don't know where the food is going. Why I'm not gaining weight. I'm losing weight,
Scott Benner 7:03
eating and drinking more, losing more weight than when previous Yeah, your mom is older or
Noor 7:09
no. She was born in the 6519 65
Scott Benner 7:13
Oh, okay. Well, she's what, yeah, she's in her late 50s. Then, yeah, okay, so she's not that. I was kind of wondering if maybe you were a late in life baby, and she was just kind of gotten past the point where she could work through this problem, and just was, yeah, but that doesn't seem like that's the case
Noor 7:28
either. No, I'm the oldest, actually, and we are only two, my sister and I, and my sister is younger than me, with only like, three and a half or four years so I'm the oldest, actually. And she got me when she was really young, which is around like, 2122 years old, something like something like that.
Scott Benner 7:43
Is there any illness in your family, generally speaking, like reasons why people would be paying attention and know what to look for in these situations?
Noor 7:50
No. What I know of growing up that my grandmother had type two diabetes, and she was doing good with the medication, but she came to a point in life that she had dementia, and she started forgetting so many things, and she drinks a lot of coke and a lot of chips and all these carbohydrates, and it turned with her to be type one.
Scott Benner 8:12
Oh, eventually her type she had type two for a while, but then they gave her a type one diagnosis.
Noor 8:16
Yes. They gave her type one diagnosis when she started like to lose her Pinker, yes, and she forgets to take her medication. And it was like, at the end of her, of her living years, you know, I remember my mom and her sisters were just like, taking care of my my grandmother. She was not talking. She can't remember who are they. They were trying to figure out, like, how to give her insulin, where to buy insulin. And it was just like, hard to
Scott Benner 8:39
deal with it before she died. Yeah, gosh. How old was she when she passed? You know,
Noor 8:43
around, I think 70s or 75 I can't remember so and she was diagnosed when she was around 60s. So she stayed type two for a long time, and then it started to be type one when she was just like out of the world. She can't remember who is she, or who are they, or whatever.
Scott Benner 9:00
How about other autoimmune issues like thyroid or celiac? Nothing, nothing,
Noor 9:06
nothing, nothing in my family. And surprisingly, I'm the only one also who has a kid with Down Syndrome and no genetic
Scott Benner 9:13
problems in the entire families. You have? How many children do you have? I
Noor 9:17
have two. I have Milia. She's turning eight in September, and I have Adam, my sweet angel, who's turning four next month,
Scott Benner 9:25
okay? And Adam has Down syndrome, Down syndrome, okay, all right, how about on your husband's side? Is there anything going on over there? Nothing
Noor 9:33
at all, just his dad in the past years, because of he was like a heavy smoker, he had the problem with her heart, and that's it.
Scott Benner 9:42
Okay, all right. So how did they get you to the hospital going back to your diagnosis?
Noor 9:46
So my insurance was very bad at that time, so I had to go back to the doctor who did the surgery for me, and I told him, like, what's wrong with me? He's like, I don't know. Like, the surgery is fine. I'm like, I'm eating and. Drinking. I drink like half of the bottle of the water, and when you are having the sleeve, you can just eat, like, you can drink like two sips, and you have to wait because your stomach can't take more sips of water. And he's like, are you serious? I'm like, yeah. He's like, show me. So I hold the bottle of water. And I'm like, he didn't believe it. So he's like, come with me to the X ray room. And he did, like, an x ray on my ultrasound, or X ray, I don't know how they call it, but just to see my stomach and all the stitches and all the rings he put, like around, like the things that he closed my stomach with, he's like, everything in its place, no leakage. So what's going on? I'm like, I don't know. So I used to go to him every Thursday he puts for me, like, banana drip in other like drips and stuff, I would feel good, but I feel so dizzy after that. So after doing that for three weeks, I think or two weeks, he told me, let's do blood work. He did for me some blood blood work. And he accused all the nurses there that I was taking the drips, the IVs, and they took from me the blood so all my numbers are just, like, very confusing to him. It's like the person who did 17 months ago the blood work is not the same person that's standing in front of me. So I'm like, What's going on with it? Why you're screaming at that? It's okay, be kinder. He's like, no, no, no, they did something wrong. Your blood sugar is very high, your sodium chloride, and all these things are really low. There's like, no, they messed it up. So come next week, let's do it again.
Scott Benner 11:25
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Noor 13:59
Yeah, because I nothing is indicated that I am team. Like he didn't believe it. Like, until now, when I go see him, he still can't be, like, he's not digesting the idea that I'm T 1d until now, wow. So I went home and my mom said, like, what were the numbers that he was screaming about? And he doesn't didn't like it, and he accused the nurses and stuff. So I told her my blood sugar was he's saying my blood sugar was very high, like around 500 in my chloride, in my sodium, and everything was just like messed up, like he said, like you're not the same person that I did the tests for seven months ago. My mom looked at me with a look in her face, like her face turned white. She started sweating around, like, her mouth and her like, front head. And she's like, Noor, I want you to buy the blood meter. I'm like, what's that like, the one that he used to use for my grandmother to know her blood numbers. He's like, Yeah. I said, okay, it was a weekend. So I order it from Amazon. She didn't make it. Like, it's a very big. Deal that I need to go and buy it, like now from CVS or something. I order it and it came on the Monday that was, like a link clean birthday or like it was, it was like a vacation in the US. I can't remember. What was it, January 15, 2004 14. Sorry, 2024 so I got it, and she's like, let me do it for you. I was not knowing. What is that? I didn't know the terms for, like, a strip, the needles, the length, like, what are these? I have no idea. So she did it for me, and she's like, but you just ate, so it's okay if the number is a little bit high. I'm like, I don't know. It's okay. So she did it for me, and I was like, 580 and she looked like she looked with a very scary face again, and she's like, she's just looking, you know, and she's not talking or anything. I'm like, whatever I was saying is, am I gonna die? Am I gonna die? Just let me know, am I gonna die? Because the past one month and a half, I was feeling I'm dying slowly, like life is torturing me. They are taking my soul out of me, like, very slowly. So she's like, No, but you're diabetic. My mom even didn't know, like, if it's type one or type two, you know, she's like, You have to go right now to the to the emergency room. So I called also my doctor, again, the sleeve surgery doctor, because he's the only doctor figure in my life at that point. And I told him this and this happened, he was not believing. He's like, how did you know I'm like, from the mirror that you put strips and blood in? He's like, You sure? Okay, meet me at this hospital. So I went, and my mom told me, when you go there, if they tell you they want to give you insulin, no, take pills, because this will mess up with with your pancreas. I'm like, okay, mom, okay. Called my husband. I'm like, I'm diabetic. Take me to the hospital. He's like, what? I'm like, diabetic. Take me to the hospital. He's like, no, no, no, there is nothing wrong about you. Let's go to the hospital and we check. This is how my story started. I was a 1c
Scott Benner 16:49
12, right? Now I'm interested. So your husband doesn't want this to be true, and your mom thinks that if you take insulin, it'll make things worse. Yeah, yeah, okay. He took you to the hospital. What did you find out? Yeah,
Noor 17:01
my aunt also was here from we are originally from Egypt, so she was here visiting to attend the wedding as well. So she went with me, went to the ER, and I told them, like, just letting you know, I'm not gonna take insulin. I just want you to run for me a 1c and stuff. And the doctor of the ER was smirking at me. I'm like, he's like, um, what did you say you're diabetic? I'm like, Yeah, how did you know is any doctor told you so? I'm like, No, my mom told me. The meter at home told me, you know, like, I was still not I didn't even know what a type one diabetic person is. In English, I had to google it before I go to
Scott Benner 17:36
the hospital. Okay, just to see you could say something when
Noor 17:39
you got a 1c I didn't know what's a 1c we have another term for it in Arabic. So I had to call one of our friends who works in hospitals, in in blood work and stuff, and he told me it's a 1c so I had to know my terms before I go and just like, talk to the ER, you know, so the doctor said, like, oh, so your mom told you. And he was smirking at me, and I was standing and I'm telling him like I have been dying, and he's not believing that I'm still standing on my legs. And I'm talking to him that way, and I just telling him, you have to do to me. 1234, yeah, as if I'm giving him orders. Yes, exactly. I'm giving him orders.
Scott Benner 18:13
Your mom, by the way, who did what? Professionally,
Noor 18:16
no, nothing. She was yeah, like, nothing. Medically, actually, she we lived in Kuwait for around, like 20 years before she moved back Egypt, and I moved to the US, and she was sales manager at Kia Motors, and she was like a sales person as
Scott Benner 18:33
well, so everything she knew about diabetes was from the last 10 years of her mother's life.
Noor 18:38
Yeah, actually not 10 years. It's the last like, three years or something with my grandmother. Yeah. Okay, so I went the doctor was smirking at me. He's like, You know what? Sit down. We are gonna do some blood work and we are gonna take care of you, don't worry. And he's just laughing and being very chill. And I'm very, like, being very mad at him. They did and everything they said. He said, like, go outside, go talk to the person on the reception. He she's gonna take some intake and stuff. I'm like, okay, so I went, I told her I'm not gonna take insulin, please. I'm not gonna sign any paper that says I'm gonna take insulin. I'm gonna take only pills. And I'm not gonna do this. I'm not gonna do that. And she's like, but if you are in a late stage in your diabetes, you will take you you will have take insulin. I'm like, no. My mom said, No, I'm not gonna take so my husband was like, let them do whatever they are doing. And just like, shut your mouth.
Scott Benner 19:26
Yeah. Your mom's like, Listen. Your husband's like, I don't listen to your mom at all. I don't think we should be listening to her right
Noor 19:33
now. And my mom just like, when my mom say something or my sister to me, like, you know, go right. I go right, go left, I go left, because they are like, I believe them. I trust them, you know. So. So anyways, they took me back, and the doctor was like, we did your blood work in your blood sugar level is over 700 let me go back a bit sure I was telling him, they kept me on the whole and the whole way of the hospital, and they put for me the IV. And I was very hungry. He was dying. So I told the doctor, Ken, my husband, buy for me. Like, Uber Eats and just like, deliver it for me. Here, he's, like, he bent down on his knees on the floor, as if, like, he's gonna say, Would you marry me? And he said, Ma'am, your levels are 700 and plus your a 1c we can't do here, because you have to be in the fancy ICU. So they are gonna take you in a very private, nice room with private toilets upstairs. And they can, they are gonna run for you. The A 1c, is there. You are not gonna be eating for the first three days, and you're gonna stay here with us for for few days, right? So no no eating. You can't eat. So you're
Scott Benner 20:39
definitely not getting Uber Eats. Just put that out of your head.
Noor 20:43
So what I told my husband is, he's not allowing me to eat. And he said, You're not gonna eat for two days or three days. He's like, why? He said, I told him, like, they're taking me to the ICU. I didn't know what I see. I was not there. I had, seriously, I had black holes over this, like, this period. This is only what I remember from the one month and a half, you know,
Scott Benner 21:01
no, I believe, especially with your, I mean, your blood sugar had been very high for like, a significant amount of time, yeah, that's true. Yeah, that's true. I don't imagine that you're gonna make a lot of good decisions during that time.
Noor 21:14
Yeah, yeah, that's interesting. I just felt so sad that I was not gonna buy, like, Uber Eats and eat because I was so hungry. So my husband is like, are you gonna sleep over the hospital? I'm like, yeah, he said that he's gonna take me to a private room with a private bathroom. He's like, nor can I come in like, my husband was so worried that I'm taking decisions in not knowing what they are saying, you know? So anyways, they took me to the ER waiting list of the ICU, and they started doing like, a lot of blood work and a lot of information they needed from me, and they couldn't find any like, good veins in me just to take like blood work. It was just a disaster in the beginning, until they took me to the ICU. I was in the ICU for five days, I think, and all the doctors came in the next day and they said you're type one diabetic. So I was standing there with my husband, and husband was like, what? My gosh, yeah, so I'm like, how he's they are, like, they also didn't have the full information of, like, how an adult in this age would have type one diabetes, and they don't have anyone in their family except the example of my grandmother. So they're like, We are running a lot of tests, and we have one of the doctors said, like, you are one of the few patients, or maybe the first patients to put a lot of resources and a lot of exams on her, like blood work that's traveling like this estate or this here, or that, or whatever, and just trying to figure out why you have type one diabetes. Am I gonna take, like, medication or take insulin? Insulin like injection? They're like, No. Definitely are gonna live on injections. Okay. I'm like, okay, so I just, like, had it as if, like, someone slapped me on the face. I was okay. I was not crying, nothing. My husband was the one who was crying. Because, of course, like, you know when, when a person just feeling vulnerable at that time? He was like, sure, like, God sent us Adam and and we didn't know how to do it, and you're the only one who knows how to do it, and doing it all by yourself, and now you have diabetes in like, I don't know why, why God is doing that to us. I'm like, the problem is not why. The problem is how. Now it's how. And I didn't know anything about T 1d at that time, so yeah, your
Scott Benner 23:27
husband was more focused on, how did this happen to us? Yeah, and you were more focused on, how are we going to manage all this? And what the hell does this even mean, any of it? Yeah, because it's not a thing you understand at that point like you're literally calling people and saying, Hey, what's the translation for this? I have to go to the hospital. Yeah, true, right, right. Wow. Did he come around, or did he stay in that space?
Noor 23:51
No, my husband would act like he came around, but it's gonna come out eventually that he's not feeling okay with it. So he was okay with it, until I would be like, really sick, or my blood sugar is really down, and I can't, like, reach to the to anywhere, because, especially in the beginning, I came out of the hospital on a walker because I couldn't walk. And I didn't know that when I was there until I left the ICU bed, and when I came on a walker, he was feeling sad that me, the strong person, the mountain of the house, that nothing would blow it away, is not knowing how to walk, and she's learning how to walk again, and she can take showers by herself. She's waiting for for me to come home, or her sister to come like from one hour and a half drive just to take to give her a shower, so he felt sorry for me, and he doesn't want to show that I'm he's feeling pity on me, you know.
Scott Benner 24:47
Okay, no, I understand. Yeah, I do. I mean, how long were you in the hospital for a week? Yeah, like five, six days, as I remember, and then you get home, you're pretty out of it for a while. Yeah, I was
Noor 24:58
still can't walk my leg. Were not strong enough diabetes eventually, like, ate a lot of muscles around my house, my around my body.
Scott Benner 25:06
What did they tell you about the the extent of your diagnosis? Like, were you obviously, you were in DKA, but did they tell you things like, wow, you're you were close to being in a coma. This was close to death. Like, what was the feeling for how far along this all was
Noor 25:21
no, they told me, We The a, 1c, can't indicate if you were, like, having these numbers for three months or not, but we are so sure it's for the past month. And they said, Thank God, you came on the right time, because I was on the last bit of symptoms before. And actually they told me, like, when I was sleeping and I couldn't wake up at all, I was going into high comas, and thank God, I was waking up from it. Oh my gosh, yeah, because I remember one of the times that my mom was sleeping over at my sister's house. They called me from my daughter's schools that my school that I am late to pick her up one hour, and they have been trying to reach me, and they couldn't reach me, and I woke up, went to pick her up, and I came back home, and actually, my my son was home in his crib sleeping, and I forgot all about him. Yeah, you
Scott Benner 26:10
were just out. You were completely just Yeah, wasted, yeah.
Noor 26:12
So this is what scared me, bad, of course, like, I don't know what's happening. Maybe the surgery was a bad idea. Or, like, I'm dying because of the surgery. Or, you know, like, I all, we all blame it on the surgery. Yeah, there's so many
Scott Benner 26:23
possibilities happening in time. You have no idea what's going on. You're just trying to sleep and just and try. You feel like, Oh, I'll sleep and I'll feel better. Yeah, exactly. And your husband, he's having that thought. I mean, I heard earlier your mom was, you know, saying like, Oh, you just need to get rested, and things like that. So, wow. Well, it's lucky you, you know, I guess it's lucky your mom knew exactly, yeah, it really is, what, where is the hospital? Like, what state
Noor 26:48
we are in, California, Orange County,
Scott Benner 26:51
okay, all right. And okay. And they were still confused by it like that too.
Noor 26:55
Actually, what happened is, when they were trying to dismiss me, they got this nutritionist to tell me how to eat, you know, like, this is your plate. Half is this? Quarter is this? The other quarter is that? I'm like, I have this leaf surgery, so I can't eat that much. I have to eat only, like, two, three bites, and I have to survive with diabetes. So how to do that? Yeah, they would look at me confused, and that's why they all told me my case is complicated, even the first endo I saw, Wow. So I was all by myself, yeah,
Scott Benner 27:27
no, no. I was gonna say, like, you know you're in DKA and you're on your way dying because you have type one that's undiagnosed, and they're busy telling you about the food pyramid. Oh yeah, you're in trouble.
Noor 27:37
Exactly, exactly. Wow. And they made me starve, actually. And of course, you will have like, other complications during the process, because they put me a lot of insulin. And then I remember one of the amazing nurses I dealt with, he came in and he's like, wake up, wake up. Your blood pressure is going down. Everything else is going down. I want to make sure that you're alive. So I had one of my best friends died many years ago because her blood sugar went down, they were trying to put it up, up high, her potassium, magnesium, all that went down. Both of them went down, and then she died. I lost her. Jeez. So of course, I asked him, am I dying? Am I dying? He's like, if you were not here in the ICU, probably you would. So I'm like, Okay, are you gonna take care of me? I'm so sorry. I can't remember his name, but he was the best person that he sat with me at night and he would talk to me, of course, I couldn't move, so I would ask him to help me, like, sorry to mention that, but to pee while I'm sleeping there, and it was so embarrassing. But you know, you have to do what you have to do.
Scott Benner 28:34
Yeah, you just couldn't. You couldn't. You were really, I mean, we got to figure out how much weight you lost. So hold on one second. I'll okay. So you were at 160 kilo. What were you at? No, 6060, kilos. 60 kilos. To how many? 4046, how tall are you? I am five five. Okay, so you lost your five five. You lost like 30 pounds in a month? Yes, jeez, they're a little more than a little more than 30 pounds in a month. On on a five, five frame, and you didn't have, what were you before the surgery? I was like
Noor 29:11
85 kilos. I think, okay,
Scott Benner 29:17
so in seven months, you went from 187 pounds down to 130 pounds. So you lost, like, you lost like 55 pounds, just a pretty significant amount of weight, and then especially on your frame. And then, yeah, even 30 more. So you were down 85 pounds. Yeah. I know. Excuse me, 85 kilos. Yeah. Basically, yeah, yeah. Well, that's insane, yeah. I mean, you lost 80, I'm not wrong, like 8586 pounds in in seven or eight months, yeah, oh, geez. And the doctor's trying to, I'm right, right. He's giving you IVs to try to bring your nutrition up. That was his concern.
Noor 29:59
Yeah. Yeah, like they are giving me IVs because they kept me with no food for three days. So they were trying to, I can't really remember what they were trying, but I remember that this point I was gonna die. And the nurse himself came in just to make sure that I'm awake, because my my blood pressure and my heartbeats were like fading away, something like that. He says I would what I would remember in and I was feeling so lonely, of course, just like doing nothing, sleeping and waking up. So he would sit with me and talk and stuff. And for them to I had, like, around four IVs in my two hands, and one of them are getting blocked in blood out or whatever. So they were trying to figure out, like a spot in my body to give me IVs from and they take, like, blood work every, like, two hours, and, oh my goodness, my hands were abused to the point like they were taking blood from my, like, between my knuckles.
Scott Benner 30:50
Oh my gosh. Oh yeah. Listen, and I know you're out of it. Like, I know you're beat up, and you've this crazy weight loss. Nutrition is a problem. You're in. DK, the whole thing, like, I understand why you don't, but like, Does no one else stand up? Like, I don't mean this is an attack on your family. I'm trying to understand big picture. Like, for all of us, not just you, you're in the middle like you're dying, you're dying, and no one's noticing beyond, well, we'll ask the doctor, and then the doctor says something, and it doesn't stop you from dying. But nobody throws up a hand and says, Well, we have to do something else, because whatever the doctor's saying is not helpful. Like, I'm very fascinated by that part of all of our stories, of the point where something egregious is happening, it's obvious, and yet we don't push past whatever advice we end up getting from a doctor. Like, you don't. I mean, by that, like, it's yeah, I get you, yeah. It's like you're drowning, and I'm telling you you're not,
Noor 31:47
yeah. Basically they, like, was just pushing me to go to the hospital. But at that time, my insurance was only covering to go to an, er, okay, nothing
Scott Benner 31:58
else. So money and insurance is a part of it, yeah?
Noor 32:01
Like it was part of it in my head. Like I told him I would go to the hospital in the ER and sit there for like six, seven hours. At the end, they tell me, take these pills and go home and you'll be fine as usual. So no, I'm not gonna go sit my ass down like for for six hours, just because they tell me you have nothing as usual. Yeah. You know,
Scott Benner 32:21
to go back to my analogy, it feels like you're in a pool, and you could stand up and your head would come out of the water, but instead, I have you with your knees bent. Your knees are on the bottom, your head's underwater. You're drowning. You say to me, Scott, I'm drowning. I go, No, you're not. And you go, Okay, should I stand up? Because, no, like, don't stand up. Just keep drowning. Like that. Part of it really throws me in a lot of people's stories, yeah, when we get to the part where what's happening is clearly not what's being said, and yet we just, like, as people, have just a lot of trouble, I don't know, turning to a doctor or saying, like, Look, you, this isn't helping. Now, again, I get you were in a bad way, but the people around you and the other stories that I hear, I'm always fascinated by by that. And you know, people oversimplify it by saying, like, Oh, you have to advocate for yourself. Like, I hear what you're saying, but like, I think it's more than that. And I don't know how to put into words,
Noor 33:13
yeah, no, I understand. And everyone around me blame it on me that I'm not eating enough. And it was a bad decision to take that, to do the surgery, and I did that. I brought that over myself. Even after I was diagnosed with T 1d some people in my family, they were like, Yeah, of course, you know, like, I don't know if you have the same thing here around the US families or not. By the Middle East, they like to talk about the taboo in a bad way, and they make it like other people's problem, like, they like to blame other things. So yeah, of course, when he was cutting your stomach, he hit the pinker. Yes. I'm like, if you want to see it that way, and it's gonna make you feel happy about it. Okay,
Scott Benner 33:51
a lot of that, like, oh, I told you, or even quietly behind your back, like I knew she shouldn't have done that.
Noor 33:56
Oh, yeah, yeah, yeah. They kept on going and back and forth. And until now, I would still like hear this, these comments, of course, the doctor hits your pinker. Yes, I'm like, if he hit my pancreas, yes, it's not gonna stop working. It's gonna bleed, like, if you don't know what you're talking about. So shut it.
Scott Benner 34:11
Yeah, no. But at the same time, those are the people who you have around you to listen to. In a situation where you're not able to really think straight for yourself, you have to count on the people around you, and that's the way those people are thinking. So, yeah, like,
Noor 34:25
this is the extended family, but my family themselves, like my mom would like, I hear her from the kitchen when I was just awake or something. Like, I'm like, Yeah, I know what she's saying, you know? Like, I know that she's blaming her life for making me do the surgery.
Scott Benner 34:40
I know I, I think all the time. I'm like, you know the I just, I don't want anything to ever happen to me, where I look up and I look around me and I'm like, Oh, these idiots aren't going to be able to help me. Like, like, I'm finally incapacitated, and it happened to me at the Pet Smart, like I'm in trouble and and,
Noor 34:58
to be honest, I don't. Know, I keep saying the Middle East, the Middle East. I don't want to offend anyone who's listening, but I'm talking about, like, the Middle East my family, they don't like to talk about a taboo. This is a taboo, like having T 1d or looking at me taking my injections. This is a taboo. Oh
Scott Benner 35:14
no, no, I listen. I don't think that's just the Middle East, but I have heard, I mean, you, if you're listening to the podcast, you know, I have a fair amount of people on from that part of the world, actually. And actually, yeah, yeah. I know, yeah. I know. I do. I do get it, like, I see that. But I mean, if you think that that's not going on in Missouri or New Jersey, I think you're, you're not, you're crazy too. Like, people just find the strangest things to I have a story that is, I'll leave out all the details of who the person is, but a tangentially related to me. I know a person who got cancer, and they, you know, there's a pool party, and the person with cancer got in the pool, and everybody got out of the pool.
Noor 35:53
Oh, my goodness. Oh, my goodness. These were
Scott Benner 35:55
all family members, wow. And I was like, what lack of understanding about the world, you know what I mean, or how cancer works, or anything. Do you have that? That was what happened that poor person just like, stepped into the pool and everybody just was like, woo, and got away. And I think that's what you're talking about, is that level of misunderstanding?
Noor 36:14
Yeah, yeah. And it happened also with my son. Like, don't talk to her about her son. Don't ask questions. Don't look at him. I'm like, Why is his nose with six openings instead
Scott Benner 36:23
of two? And then you're telling me that now you're alone, right? Yeah, yeah, yeah, yeah, because nobody's willing to talk to you about it, nobody's willing to help you.
Noor 36:35
Because my my parents don't live here, my sister lives like one hour and a half away from me. So when I say, like, I'm alone. I'm just taking care of my kids alone because my husband is working too much so we can afford the Cali life, you know. So this is what I meant by doing it alone. And of course, even the doctors after I was diagnosed, they didn't know what to do with me, and they were all saying, like, Oh, your case is complicated. Go figure it out. Yeah. I mean, listen,
Scott Benner 36:59
if you're living in California, and he's the only one working, he's working 24 hours a day, I would imagine exactly
Noor 37:05
true, true. And man, my son needs a lot of care because he's self severe harm, and he's turning four, but he still can do this and can do that. You know, he's very smart, though, but still, like, I don't want to see it, but he is having a lot of bit of differences between him and a normal kid, sure, even though I am just saying like he is as smart as anyone else, of course he is, but still, I am helping him to do every single thing else. Yeah,
Scott Benner 37:32
you know. And now you're there's a lot more to keeping you alive, too. Exactly,
Noor 37:37
so taking care of my kids by myself and do whatever I used to do by myself as just like so limiting. Now, even though we say like, we are different, but we are not less, no, sometimes it hits me like, No, I am less. And every time I say I can do it, I end up dying, so I'm not gonna do it. You know, I'm and because I felt even the doctors that I was trying to let them help me after I was diagnosed and went to see my first Endo, she said, Oh, I can't help you. I can't give you a sliding scale. Your case is complicated because you don't eat like a normal person, so I don't know how to help you with that. So go figure it out, and then come cry to me to have a pump. Yeah,
Scott Benner 38:22
yeah. Boy. I so they So, because of this, they used your sleeve as an excuse to even help you get your insulin set up.
Noor 38:29
Yeah? Like, they couldn't. They couldn't, like, the sliding scale. Oh, my goodness, I would, I would take the sliding scale they are giving me, and I would end up, like, having a lot of severe lows, to the point I'm like, I'm drowning in lows, and I'm drowning in this more than when I was not diagnosed.
Scott Benner 38:44
Yeah, so what did you end up doing? What helped you?
Noor 38:47
So I end up searching online why I'm having five lows in more in less than, like, two or three hours at night, and I will be sweating. And after after diagnosis, I have been sleeping and not waking up at all. And I was like a light sleeper before. So my phone is ringing, everything is so I felt like it's very overwhelm, overwhelming, and I don't have anyone to turn to to ask. So of course, in this era, you would feel like, Oh, I'm the only one who's diabetic. This is happening only to me. Every other person who has diabetes, they, of course, they are now like professionals in their like, I thought, like other people with diabetes for like, few years, more than me, their numbers are flat because they are taking, this is what I thought. You take insulin, your number stays flat in as if, like, it's a working pinker gas. Just, yeah, yeah. I have this myth. You know, I thought, like, pumps. You just eat the pump. See that you ate. So it's gonna work by itself, and nothing else happens, like, as if you have a working printer. Yes, I'm like, Okay, I want a pump.
Scott Benner 39:51
I'll take the magic pump in the flat line. Let's, let's make that happen. So
Noor 39:56
I That's why I tell you. Like, when I think all the men. I had about diabetes in the beginning, and I didn't have anyone to correct me. I was like, Oh my goodness. And when I went to the first support group that I went to, I thought, oh my goodness, this person had diabetes for like, 50 years. He's he took masters. He's a master in this he's very professional. I wish I learned from them. And I was so surprised that I added him on my social media, and I found that he has highs and lows. I'm like, I'm not the only one. It makes you
Scott Benner 40:25
feel better just to see somebody else had the experience, yeah? Like,
Noor 40:30
I was so surprised that other diabetics go up and high. It's not because me still new to it and I can't control it, right, right?
Scott Benner 40:37
Yeah, no, you just think that. And when you have that feeling too, that the technology is just, it's perfect,
Noor 40:43
oh yeah, I had you just put it and wear it and you eat, in a sense, even my husband, he's like, it doesn't do that. I'm like, No, it doesn't. He's like, are you serious? So why would you put it, like, take injections? I'm like, at least I'm not gonna take injections for three years, for three days. It's gonna only work. Like, I change it every, like, three days. He's like, Oh, and it doesn't stay for you, like, forever. So we had all these imagination like, you know, dreams, yeah,
Scott Benner 41:09
what it all was gonna be, yeah? Well, now that you know what it is, though, are you happy? Like, do you have? Like, what pump do you have now I'm on tandem Moby, and how do you feel about it? I love it. Yeah, it's working for it. That's awesome. Yeah, yeah, I love it. But what did you figure out between the time when you thought it was a magic thing and what you know now? Like, what did you learn, and especially with your sleeve and your eating style? Yeah,
Noor 41:31
so I was on Omnipod before I was freshly diagnosed. They said Omnipod is no tubes and stuff. And I was so scared to have a tube wand, because my son would pull me from it, and he will not get like, don't touch this. Because when you tell him, don't, it's like, yes. So I was on OmniPods, and I went on the honeymoon phase really fast, like I was going still gradually down very fast. So when this started to happen, I started having a lot of highs with my pump and a lot of like, skin abuse and all these that like all these things. And until one of the clinic nurses, he has diabetes too, and he told me, You must count carbs. I'm like, but my case is complicated. I don't eat well. He's like, even though put this application on your phone, and he was on the phone with me for two hours, and have Scott just teaching me how to count carbs. So he taught me how to count carbs. So after I changed from Omnipod to tandem Moby, I was already a professional knowing myself, like if I ate this, this is 30 grams of carbs. If I ate this, this is, let's say, 50. I'm gonna only eat 20 grams of carbs. So I have been mastering it. Now, of course, sometimes I would, I don't like, trying to Bolus, like, really high, because I know I'm not gonna eat that much, so sometimes I under Bolus, but it's okay, like, the pump works, it gives me corrections. And sometimes I let it be I'm just, like, happy with the tandem movie, because it helps. Like, I don't have to go in every time and correct it myself. It corrects itself. You
Scott Benner 42:59
were using Omnipod, but not Omnipod five, not Omnipod five. Yeah, you were using Omnipod five, but on the sliding scale, it wasn't helping. No,
Noor 43:06
of course, not like the doctor said, Go teach yourself how to give insulin and then come back to me. I will then write for you a pump. When
Scott Benner 43:15
you first explained that, I thought that's backwards, because if you're not eating very much, then counting carbs would have been the way to go. From the beginning, like the sliding scale didn't make any sense to me. When you can't possibly eat all the carbs that they're asking you to take to begin with. Yeah, that's it's backwards. It's so interesting that somebody heard your problem and then came up, and there were two options, and they picked the one that was completely wrong. Yeah, yeah. And how long did you stay in that situation before you figured out to count the carbs? That was
Noor 43:44
just like after I went out of the ICU, immediately, I went to this and do she told me that. So I went home trying to figure it out with my mom. So at the hospital, they gave me these like pens, and said, Go home, eat and then give injections. I told my mom this. My mom said, No, we were doing that with your grandmother? I said, like, No, I'm not gonna start like, I'm not gonna believe sorry. I'm not gonna trust your decisions with my grandmother, because after I got diagnosed, she was going through hell, and you and my aunts didn't know that, yeah, and I started explaining for them how my grandmother was feeling, and they all started crying because they were doing their best, not knowing what's going on, sure, and she doesn't talk. So I told my mom, like, I'm not gonna trust your decisions. I'm gonna listen to the hospital
Scott Benner 44:26
well. So what ends up really happening is you have to go online and figure out what to do for yourself.
Noor 44:30
Exactly, yeah, exactly. Until I met, like, the support group, I started going to right? They started helping me. They made me know, like, they gave me this all information about like, Oh, you have to make sure that the DMV knows that you have diabetes. You have to put this in your car that on you, and you have to do this, do that. Of course, no one could help me with the food, because still, when you say this to anyone, they don't understand that my stomach is smaller than my four year old. But I figured this part out. But they were there, like, my support group was there to just, like, help me through it, and they were the best thing that ever happened to me until now. Well, I'm
Scott Benner 45:08
glad, I'm glad you found people to help you, yeah. So it's wonderful. It really, I mean, especially in a world where the doctors were on, they weren't getting you very far, and they weren't going to help you anymore, like you were told, go figure it out for yourself exactly, yeah, no, that's awesome. And you would say Today things are going smoothly. Oh
Noor 45:27
yeah, oh yeah, no, no, I'm seeing myself as a master in T, 1d just like how the other people that I used to see them when I was diagnosed, yeah,
Scott Benner 45:36
oh, that's awesome. It's and it's awesome that it happened so quickly for you too, because it really is. It really isn't that long. You haven't had type one for a while. I mean, as messed up as your story is, you got through it really quickly. Yeah, sure, yeah, awesome, but good for you. So what made you want to come on the podcast?
Noor 45:53
Because I I'm not, like, having a different story than others or anything, but your podcast was one of the things that helped me trying to figure out and search about like things of for like T 1d people or T 1d things or whatever. So I wish someone somewhere would hear it out. Maybe I will give them a laugh. Maybe they will say, Oh, I didn't know this. I didn't know that, just like how I was so surprised and learned from you so many things about T 1d in the pumps, and especially the one for OmniPods, before I was going on it, on it. So I just want people out there just to hear my story, know that you are not alone. Because I thought I was alone, if you still say that you can't do it, part of it is somehow okay you can't, but you still can, because we are different, but we are not less. Just to be with you and hear your voice like in my ears, not like just watching you. Oh, that's
Scott Benner 46:47
nice. Well, I'm glad. Is there something about I don't know, the way the information is delivered, or the information itself, or me, or the people you listen to, like, can you give me, like, some insight on why it was helpful to you? Because it's a thing that I know it sounds strange, because I'm the one that makes it, but I don't really always understand why it
Noor 47:06
helps. Yeah, no, it helps, because you would see other parts of the world, and other people from this world. You are not like alone. You take people from Bahrain, you take people I don't know the other woman that I she was explaining so many things about her son. She wasn't from the Gulf area, but I can't remember which country. So I'm like, also Scott, like, have also people, like different people, not only like here in the US. So that was one of the things I loved about I love it, about it the way you're so friendly to the person in front of you, and you made me feel like I'm talking to my therapist right now. Like, it's not like, oh, I have to be like, oh, like, formal. And I'm like, you know how to laugh, so your prestige doesn't, like, get affected. So no, you made me feel like I'm just talking with my best friend on the phone. You know.
Scott Benner 47:56
Well, I'm glad. I'm glad. Yeah, so, so a mix of information, yes, and community and a and a personal feeling, yeah. And
Noor 48:04
one of the best things ever to be part of your Facebook group, because they were, they will answer right away. It was the only group that I was on after diagnosis. And most of the people, when they tell you, like, most of the information there is right. It's not like just people saying whatever they want to say, even if it's false or true. You know so. And you are on the group all the time, and when someone like tag you, you are there your posts. You have a lot of like fans in this group that they share. Once anyone ask anything, they share your podcast. This is what made me know podcast. And I have a podcast on my iPhone. I can listen to you through my iPhone. I'm like, I was so surprised with the technology I learned
Scott Benner 48:46
how much you figured out. Yeah, I think it's possible I've brought more people into pot to listening to podcasts that would never and were never going to listen to a podcast before. Exactly. Yeah, I think that's that's pretty and I have to tell you that I agree about the group, like, it's always gonna be the internet, and you certainly can't expect that everybody's gonna say something that's completely 100% right every time, right. Like, I get that, but, man, this group of people, I don't know how it worked out so well, but you're right. 24/7, someone's there first of all, and I think that's the podcast helps that, like, you know, because there's people from different countries. So while the time zones are switching, it doesn't matter, someone's always awake, people are motivated to help. And very kind, like, you know, especially for the internet, you know what I mean? Like, very, very kind, yeah, oh, I'm glad, I'm glad it's all working out for you? Yeah, thinking about like, where you're from. Are there a lot of people looking for this information that don't speak or read
Noor 49:49
English? I don't know anyone there that is diabetic, except a person who does also like interviews for people by just like, look, I added him on. My Instagram, and he's very good, actually. So this is the only person I know that has diabetes in my life from the country I live at like I used to live like I'm from, you know. So the unfortunate, you know, like information is I don't know anything about, like, other diabetics there in Egypt,
Scott Benner 50:17
yeah, I just, I always wonder if there's a way for me to make not all the content, like, you know, not not like long form conversations with people, like all the time, but if maybe just the bold beginning series, or like the pro tips, for example, could be translated into other languages. Like, I wonder if that would be valuable, or if it's,
Noor 50:35
of course, it was. Someone is doing a research like how I did, just because trying to figure out, like, What the hell is going on? Maybe it will, because, to be honest, I heard, like, bad, negative things about what's going on there with diabetes, and I thank God that I'm here and I have good insurance. I can pay my co pay for my, like, insulin. I can get whatever insulin I choose to get the case there is very different. And even the sensors that we say OG seven is bad, og six is bad. Oh, my goodness. Replacement there, they have to pay, to pay fortune of money just to get the very old version of like Abbot, like the libre, yeah. And for tons of money, that stays only on for 14 days. So when I saw that, I'm like, I'm now taking care of every drop of insulin in my cartilage, because I don't want to, like, waste any drop of insulin just because people there are just, like, die or go search for insulin all over the pharmacies. You know?
Scott Benner 51:38
Yeah. I mean, obviously you can't fix everything for everybody, right? Like, and it's, it sucks, but I wish I understood maybe more clearly. Like, what do they have at their disposal? And, like, you know, you know I'm saying, like, so maybe you could tailor what they need and look at what they have and try to find a plan for them that works, that's more valuable than what they're getting, like, because it almost seems mean to like, lay out, like, well, here's what you need to do, except that, like, you know, yeah, they can't find that device, or they don't have this thing. Like, I'd love to know, like, this is what we have, and then talk through how to help them with that.
Noor 52:19
Yeah, yeah, I would say this, like, the information I'm going to tell you right now, this is what I heard from people there. May I don't want to offend anyone in my country, because I don't know, like, Sure, back home, like, I don't know what's going on with the situation of everyone. But what I heard is the insulin is so hard to find, and you can find, like, a local insulin, but you have to go and search for so that my friend that I met on Instagram, he told me, like, I have to drive to several pharmacies just to find insulin. And when I find insulin, I don't take like all the insulin that this like pharmacy has. I just take like some because I'm leaving for others. And I would tell others, like, hey, look, I found insulin that where, like, this place, the insulin is expensive. Not everyone can get hands on, even the needles that we use one time and throw away. My mom said, like, we didn't know that you have to use it one time and throw away, like the needles of the pens. My mom said, like, we would use it for so long until it bent. I'm like, why? She's like, we don't know that we can do it like every time to change like, you have to change it every time. And the needles itself are very, very, very expensive, and the sensors and stuff, these things are not like, laying there for everyone to get, only people with money and only people who can get hands on, like, with Egyptian pounds, it's around, I think, I think, if I can remember, well, it's like, 7000 Egyptian pounds just to get the Abbot, old virgin, and you can't find it every 14 days. It's not like, like, here, you take the supplies for 90 days or 30 days. No, it's you get it today, maybe tomorrow, you can't find it,
Scott Benner 54:01
right? And then 14 days. Now, if you're lucky, it lasts 14 days, it doesn't work, and then you have you can't find it again anyway, yeah, my
Noor 54:08
friend that I'm talking to you about, he said, like, this is the only sensor I have, and I can't find any. I'm like, I wish I can send you whatever I have at home, yeah, or buy for you at least, and send it to you. Like I was feeling so sad that he can find a sensor and he has to go the old school.
Scott Benner 54:25
Is this indicative of all healthcare there, or is this a little bit of the taboo part, where nobody's really looking at diabetes? No,
Noor 54:32
it's not like that. It's just like because resources of the country itself is is not good in like, I'm not living there. I can't really see but some of the people, they even don't know if they have type one or type two. When I ask, let's say, like, half type one or type two, I don't know. I'm like, I asked, Do you take pills or pens? Like needles? They Oh, no, no, no. We take, uh, pills, yeah,
Scott Benner 54:56
just yeah. Maybe that's all they can find. Even. I have
Noor 55:01
no idea, Scott, to be honest, but I heard like it was so hard, so because I can't help so many diabetes there, like back back home, what I do is, if anyone here that needs any help, I can afford help, and I can help any person here. I told my husband, I'm not gonna die on, like, I'm not going to sleep sorry, on my pillow, knowing that other diabetic person needs insulin and they can't get because of insurance or, like, money problem, or whatever, I would spare, whatever I can, just to help people here because I can't help my friend back in back home, you know? So at least I'm going to do it here, because people are suffering. No one can know anything about diabetes, except when you have it. Yeah, I'm gonna help people here when I can.
Scott Benner 55:44
That's lovely. I don't know it's such a problem. And not, I mean, not that it's not a problem in America, but like, when you juxtapose it against other countries, you think, like, Wow, it's so much it seems so much worse there, then, then here. But doesn't, it doesn't make anybody's you know, it doesn't make anybody struggle less, you know, but it just really, I don't know how to handle it, like I wouldn't, you know, in a million years. I don't think, I don't think a pile of money fixes it. I don't think, you know, it's, it's obviously the governments of all these different places need to prioritize these medications for the people who need them. And if they're not willing to do that, then there's always going to be deserts where you can't get it. There's going to be gaps where you can get it for some time and not in others, or times when your employment is going to change or something, and something is going to get in the way for most people at some point. Yeah, and
Noor 56:36
people there, so many people are really poor just to afford even strips for each other meter. So, so you can, you can do anything about it. Like, you know, you want to take all the answer in the US and send it there, and it's not gonna still work, because it's gonna be very expensive for the people
Scott Benner 56:53
there. Also, you have people testing, but they don't even know what to do with the numbers when they get the test back, right? Like, yeah, you know what I mean? I
Noor 57:00
have no idea. Like, oh, he, my friend, told me, like he's trying to do all the interviews that he's doing to advocate for everyone else with diabetes and just to teach the diabetic person what you're supposed to do, yeah? So I'm like, Oh, they are way back there.
Scott Benner 57:17
Well, that's, that's kind of what I was talking about, too. Like you could drop, you could drop this podcast onto somebody, but it might go so far over their head that if they're not able to dig through it, like, really spend the time, listen, understand what they're hearing, then look at their situation and think, like, how can I apply what I have at my disposal to this idea? I mean, it's a lot. Yeah, right, yeah, true. I don't know what to say. I really don't. Oh my gosh. I appreciate you coming on and sharing your story. That was very kind of you. And thank you for spending this time with me. Do you think we talked about everything that you wanted to talk about?
Noor 57:51
Yeah, yeah. And thank you for having me and let me talk about it in with someone who speaks the same language, like as I, and the people who are gonna hear they speak also the same language, so they would understand no so thank you so much. If you have like, any more ideas or any more like questions for me, you want me to answer just, I'm here for it.
Scott Benner 58:14
Awesome, awesome. I appreciate this so much. Thank you. Can you hold on for one second for me? Yeah, sure. Thank you. Hold on one second.
Speaker 1 58:22
You the conversation
Scott Benner 58:29
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