Tina Coneybeare talks type one diabetes, celiac disease, and lymphocytic colitis.
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Transcript
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Today I’m talking talking to Tina Coneybeare about type one diabetes, celiac disease, and lymphocytic colitis. One thing that is so interesting to me about Tina’s story is that she has three distinct diagnoses that are all relatively well managed now, so she takes us through the whole diagnostic cycle from symptom onset to effective treatment and is able to compare and contrast each of those experiences. It’s a pretty interesting ride.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
[guitar riff]
Brianne: I like to start by asking people, how was your health as a kid?
Tina: Okay. As a kid, my health was actually perfect. I never had allergies. I never had any… the only thing I can remember as a kid really was having chickenpox, which I think is pretty normal for any kid. I never had any issues, no diseases, no allergies, for sure.
Brianne: Yeah. And so then…
Tina: I never missed any… I never missed school. I don’t remember anything.
Brianne: Yeah. That’s great. So then what happened, or when did things start to change for you?
Tina: Okay. So when I… so a month after my 21st birthday, I had started a new job, and I was feeling extreme fatigue. So I started working at a casino, and my shifts were all over the place, and I was doing overnight shifts. And I kind of just attributed all of my sleepiness basically to that. Shortly after… I would even say within a few weeks, I moved out into my own apartment with my girlfriends. So there was a lot of life changes going on, so I just kept thinking like, “This is adulting,” as I would put it.
Brianne: “Totally normal. I’m working ridiculous hours, whatever it is,” yeah.
Tina: Right! You just think, “I’ve never done this before, so maybe this is what happens when this happens.” So I would come home maybe around five o’clock, six o’clock in the morning from a shift, and I would sleep until five o’clock the next day, like nothing. So when I was living at home, my mum would be aggressively waking me up, and by the time I woke up, I would feel like she was pushing me right into my bed. I was just so out of it.
Brianne: Yeah, like she’d probably been trying for a while, and you didn’t notice until it was vigorous.
Tina: Yeah, exactly. I can remember one time where she was waking me up and I could hear… I felt like I was hearing her calling me as if it was in the distance, and I had to really push myself to wake up. So I think that was me with really high blood sugar, maybe even close to going into a coma. It’s hard to say, cause obviously it wasn’t testing at that time.
Brianne: Right.
Tina: I started noticing… like you start to crave sugar, like natural things that would make you wake up, but all that was doing was spiking a blood sugar and that would make me even more tired. So now I started missing work because I was too tired to work because I’d be drinking a can of Coke on my way to work, thinking “Oh it’s going to wake me up.” But it would just make me crash.
Brianne: Caffeine and sugar. “I think I have a young, healthy body, so this is exactly the thing that will just help pick me up.” Yeah, totally.
Tina: Yeah. “This is going to pep me up for my shift tonight.” But it did the complete opposite and I would be going home, back to sleep thinking like, “Okay, what’s going on? Maybe I have a flu or whatever.” Because I had never, ever dealt with anything like this before. I guess before everything really came to the start of everything, I went to the emergency room in my hometown, and I just said, “I can’t stay awake. Like I don’t know what’s going on with me, but I literally can’t stay awake.” And all they said in the emergency room was, “Well, there’s no cases of mono going around at this time.”
Brianne: No other questions.
Tina: Nothing, not even, “Okay, let’s check your blood sugar. Let’s have you come in and see a doctor.” Literally, I didn’t even get a band to put on my wrist. I just literally left, and I saw…
Brianne: Spoke to the person at the desk.
Tina: Yeah. It’s scary. I really could have died. Now that I know everything that was going on. And then I went a couple more weeks like that, and then I saw my family doctor for my physical, and I just said, “I’m feeling really tired lately.” And he tested my blood sugar. And at that time, I think it was 26 or 27.
Brianne: Okay.
Tina: I’m not sure how much…
Brianne: Can you tell me the range on it? Just because I… one thing that I know and I don’t have in my head, is that we use different units for it in the States. So in the States, I think you are classified as pre-diabetic at a hundred, whatever the units are, I believe 100 is either the line for diabetic or prediabetic. So do you know what that… approximately what that line is in…?
Tina: You know what, I really don’t know the conversion when it comes to Canadian and American numbers, I know it’s measured much differently.
Brianne: Do what a healthy number would be? Or a target number?
Tina: For a target, for Canada, my blood glucose targets are between five and seven.
Brianne: Okay, so 27 is…
Tina: So 27 was like, “Whoa, where did that all come from?”
Brianne: Yeah, it’s high. I’ll look this up for the notes or whatever.
Tina: Yeah, there’ll definitely be like a conversion calculator, and I’ve definitely checked it before because I do read a lot of American things about diabetes and stuff, so you kind of have to do the conversion, but I can never remember it.
Brianne: Yeah I know that when I also looked this up. I was like, “These are so random and unrelated units on both sides.” Hey, future Brianne here. I just looked this up on a conversion chart, and it looks like a 26 or 27 in Canadian units is almost 500 in American units. So hopefully that’s helpful for a little bit of blood sugar context. So, okay. Did they also check your A1C at that time?
Tina: Not that I recall. Initially it was… we went straight to, “Okay, you’re a type two diabetic.”
Brianne: Okay.
Tina: “So we’re going to try to just keep a journal and test your blood sugar and see how it goes for maybe a couple of weeks and we’ll see how that goes.” Cause it was kind of unheard of for someone… la brand new, 21 year old to be diagnosed with type one diabetes. Usually that’s kind of more for… well, at that time it was more for younger children because that was actually 18 years ago. So it was… yeah, it didn’t change anything. I did monitor my… I checked my blood sugar. I was eating… I always ate well. That’s the thing too, that I think about, as a kid was we never… I was always sad as a kid that we never had Kraft dinner at our house. We never had hot dogs. I always ate well. We always were healthy eaters, and I don’t think I was fussy. I definitely like all vegetables and things like that, so it kind of makes me think like, “Where did this come from?”
Brianne: Yeah. Especially where type two is typically attributed mostly to diet and lifestyle as opposed to type one being autoimmune.
Tina: I’ve never been overweight. I’ve always been lean. I’m 5’7″, and my weight as an adult has never been above 130. So I never… I just couldn’t understand that, and I guess maybe over a little bit of time, I remember my doctor calling me on a Sunday while I was at home with my parents at that time. And he had just said, “We’re gonna admit you to a diabetes clinic, and you’re going to go there for three days every day, all day, and we’re going to start you on insulin. So we’re going to diagnose you today as a type one diabetic.” So that was kind of a surprise too. Like, “Okay. Whoa, I just went from being completely healthy, just a regular person, I guess we could say, to now, an insulin pen and injections. And whoa, I don’t know anything about this stuff.”
Brianne: Yeah. And so what had… for your doctor to tell you that we’re going to classify it as type one instead of type two, this was just after the two weeks of monitoring?
Tina: Yeah, it was a couple of weeks. Like I said, it was so long ago, and it was pretty heavy at the time that it’s kind of… it was just such a whirlwind that… and I was an adult… my parents.
Brianne: You didn’t know anything about it then.
Tina: Yeah. And my parents were not coming to these appointments with me, so this was a lot to take on just for myself. At the same time too, I’d just got glasses, so I’d always had 20/20 vision. I never wore glasses, and now all of a sudden I have glasses. My vision’s blurry. All of the symptoms leading to diabetes I have, I just didn’t know. I guess there wasn’t a lot of awareness about it because there was no social media at the time.
Brianne: Right. It was so different.
Tina: And it was just couple of… maybe if you knew somebody, then you would know, but I didn’t even have like frequent urination… things that I knew about from one person that I knew that had diabetes, so a lot of it was kind of just like my own diabetes, which makes sense because everybody’s diabetes is different and their own.
Brianne: Yeah, it would be a lot at once.
Tina: Yeah, it was a lot at the time. I guess maybe they did do an A1C test. I don’t really… I wasn’t told why, “Okay, we’re just going to go to insulin.” It could have maybe even been that my blood sugars weren’t changing after all that time and testing, and you don’t want to go too long with really high blood sugars being not controlled, so maybe that was the decision.
Brianne: Right? And so they said, “Okay, we’re going to classify you as type one and here is kind of an educational clinic. Is that right? For the three days?”
Tina: Yeah. So I went to a diabetes clinic in my hometown, and it was probably about, I would say maybe 15 or 20 of us and everybody, like, I’m not even exaggerating, everybody except me, was a type two diabetic. So did I learn anything about type one diabetes? No. So everything that the nurses were talking about, I’d kind of get the sideline of, “Oh, this is different for you, for you, because you’re a type one, but we’re going to talk about this after. And there really wasn’t an after. The only after I got was, “Okay, Tina, come with me. We’re going to teach you how to do needles.” And so I basically just gave an orange injections with an insulin pen. That was my type one diabetes training. So everything that I’ve learned has been self-taught or trial and error, or honestly, Diabetes for Dummies. I’m not even joking. I bought the book I guess maybe some things on the internet, but 20 years ago the internet wasn’t really a thing, so it was just a lot of reading.
Brianne: Yeah, not like it is now. Yeah. And they’re so fundamentally different. They have the same name, but they’re really different diseases.
Tina: They’re completely different diseases. They really are I don’t take any pills for this. I’m only taking insulin. I’m taking other things that have actually positively impacted my diabetes, but I’m not taking it specifically for that. But the three day class was… I guess, it was interesting, but it had nothing to do with me at all.
Brianne: Right.
Tina: So I don’t really know. I don’t really know why I went, or maybe my doctor thought there would be more for me, but there really wasn’t.
Brianne: Right. It was maybe the only thing that they even knew to suggest.
Tina: Yeah.
Brianne: And so you also started using insulin at that time, so that would be a big adjustment too, right?
Tina: Yeah.
Brianne: So what did that look like? I’m guessing you’re checking your blood sugar all the time and then dosing.
Tina: It was really freaky. Yeah, it was really freaky because there were so many things happening at the same time, so, I remember for sure living in my own apartment. I remember kind of sitting on my bedroom floor, having tons of garbage around me from my test strips, my alcohol swabs, my lancets, and testing my blood and doing a lot of guesswork, which… for my bolus base dose, as well as a correction. So when you go to learn about giving your needles, they give you this big long formula about, “Okay, if your blood sugar is too high and you’re about to eat, you’re going to need to give insulin for your food, plus you’re going to need to get your blood sugar back down, so you’re going to need to do a correction.” So when they were telling me that, even though, I guess because I was younger, I didn’t think to say like, “Hey, I don’t understand what you’re talking about.” So I just said, “Okay, I understand.” And I left. So that was not smart on my end, but it was very overwhelming. Yeah.
Brianne: I can imagine being in that position and just thinking, “Oh, this will make sense when I’m doing it.” And then you’re doing it and you’re like, “Oh, this… I really actually need to get this right, and it’s overwhelming.”
Tina: Yeah. Yeah. Scary things can happen, and they also talk about low blood sugar. So I was anticipating that. I had no idea what that was going to feel like, and if that was going to be absolutely crippling or if that was going to be just something where I’m going to know it’s coming on, and I’m going to have a little bit of a warning. So anticipating that was pretty scary. Now I’m also getting insulin in my body, which is a hormone that I hadn’t had for who knows how long. So your body goes a little bit crazy when you’re getting new hormones. So I got the most atrocious yeast infection that I’ve ever had. I think probably the only one I’ve ever had, and that was excruciating.
Brianne: You’re like, “One more thing!”
Tina: Yeah, exactly, and that was keeping me up in the night and it was… I would never wish that on anybody. And I still remember that from… like I said, 18… this November will be my 18th year with type one. So that was horrendous. It was just awful. And it was just a lot at first. But once things settled down, it was obviously good. But even while all of that was going on, it was a lot better because now I’m feeling better, now I don’t feel so dozy and tired and headaches. I can… I’m functioning. So that was kind of like a bittersweet feeling, but I guess worth it in the end at the same time, too.
Brianne: Yeah. Now you have become a person who is sick. However that felt, or was, but also the symptoms themselves are getting so much better that it’s like, “Well, I have to do this forever, but, fingers crossed, if I do this forever, so tracking blood sugar, using insulin properly, all this stuff, then I can have a pretty normal life.” Like that’s the promise of treatment right?
Tina: Right. And that is how I feel about it. I know, my grandma says all the time, “I don’t know how you do this. I don’t think I could ever do this.” But you have two options. You can do it and be healthy and happy and live your life, or you don’t, and you literally will die. So, I just… you just do it.
Brianne: It’s an easy choice.
Tina: Yeah. You just… it’s not an option. If it is you and that’s your life, then you just do what you need to do. So it hasn’t really been… hasn’t been that bad. It’s just an adjustment. But I lived like that for about 10 years, and then I developed celiac disease.
Brianne: And so how did that come to light for you?
Tina: That was a really tough one because at the time I was living in Montreal, and originally I was living… I’m from Ontario, so I moved to Quebec for work and I was living there for about two years. And I had gone on a trip with my family. We went to Japan to visit some family that I have there, and when I got back, it just hit me like a ton of bricks. So I kind of thought like, “Oh, maybe I have a virus or maybe I picked up something, or…” I had no idea what was going on. So after a long time of having, basically just digestive problems, and I couldn’t bend my knees… that’s how inflamed my body was on the inside. I couldn’t bend my knees to get out of the shower. I’d have to swing my leg over. I had no idea what was going on with me. I didn’t even know what it was, and I didn’t know that once you have one autoimmune disease, you’re off… you’re going to get other ones. I don’t even think you’re susceptible. I think it’s just a matter of time.
Brianne: Yeah it’s very likely. And were they visibly swollen, your knees? Could you tell or were you just like, “My knees aren’t working, and I don’t know why.”
Tina: No. Yeah. “My knees aren’t working. I don’t know why.” And the healthier I was eating, the worst my symptoms were, so basically I just had chronic diarrhea. I’d wake up every single morning, and I just had an upset stomach every single day to the point that I was late for work every single day. I had to tell my boss, “I’m really sick and I don’t know what’s going on.”
Brianne: Yeah. And what did healthy eating look like to you at that point? Which actually… so had you changed your diet at all when you got the diabetes diagnosis? And then, how were you eating at this time?
Tina: I guess I was eating healthy… healthy like I always had been. So if anything, the only change that I really made was that, rather than eating a whole chocolate bar, I’d be satisfied with a couple pieces because I didn’t want to feel like crap after.
Brianne: Right.
Tina: And I was completely fine with that. Like you still want the sweets.
Brianne: Yeah.
Tina: But you don’t want the consequences.
Brianne: Of course.
Tina: So that’s really the only change, but… because I had always eaten well, my whole life.
Brianne: You’re having fruit and vegetables all the time, with every meal, and then probably like, a starch.
Tina: Yeah, I’m having fruit and vegetables. I think that the big thing for me was, “Okay. So I need to eat really healthy now because I don’t know what’s going on with my guts, so I’m going to eat whole wheat bread, and I’m going to eat bran flakes and granola bars and all the things that are… just not helping my body at all. All of the things that I shouldn’t be eating. So basically what I needed to do was go gluten free, but all I was really doing was now taking on more.
Brianne: Like whole grains.
Tina: Yeah. More whole grains. So I spoke with a friend of mine, and I just told her my symptoms. She’s a nutritionist. And so she had even said, “Okay, keep eating healthy. Let’s keep a journal of what’s going on for even a week or two, and let’s try to change up the food.” So one day, I would have a whole wheat sandwich and I would be sick, sick, sick. The next day I would have like rice and chicken and broccoli and not have something so detrimental, and I could feel the difference. I would notice the difference. So I started telling her what was kind of feeling better and what was feeling worse. And all this time… so I came back from Japan in May, and by the time I had reached out to her, it was probably like August, September cause this is so embarrassing. To phone someone up that you’ve known… elementary school, high school, and just say, “I have diarrhea and it won’t go away. What’s wrong with me?” And I’m taking Immodium and I’m getting scared because on the box it says, “If this continues, contact your doctor.” So it was continuing and I was terrified and I was going to the doctor and they just kept saying, “You have IBS, take this, you have IBS. Take that.” And I was like, “This can’t be like, this cannot be.”
Brianne: Yeah.
Tina: So when we started talking about my food diary, she had said, “I think that you might have issues with gluten.” And I was like, “Well, what the heck is that?” I had no idea… I was 30 years old… what that was.
Brianne: Almost 10 years ago, right?
Tina: Yeah, so… well it was 10 years after my diabetes diagnosis. So yeah, this year is, I think my seventh year with it.
Brianne: Okay. Yeah. That makes sense. And how long were you in Japan for?
Tina: I was only in Japan for two weeks.
Brianne: Were you eating mostly Japanese food? Do you think that’s partly why since… they do have gluten… I guess if they use soy sauce or whatever, but like rice is the main starch, instead of bread.
Tina: Yeah.
Brianne: So you could have taken a break by accident, and then when you got home and started eating it, your symptoms would have kicked up.
Tina: To be honest with you, I remember being on that trip, and I know we talked about the whole TMI thing, but for me on that trip, I was so constipated because I just was kind of… I think the time change kind of blew me away because they’re 13 hours ahead.
Brianne: Travel? Totally. I think that’s normal. Awful normal.
Tina: And it’s not my… yeah, right? It wasn’t my own house, and as much as I love my family, and I could easily relax, I just… we were just so busy. We’d be out of the house at like eight o’clock in the morning, and we wouldn’t be back home until probably nine o’clock, 10 o’clock at night.
Brianne: No normal body routine.
Tina: Yeah. My whole routine of my life was just completely upside down, so I really don’t fit… I don’t know. It could have, but…
Brianne: It’s a mystery. It’s just one of those things that’s part of your story now, right?
Tina: Yeah. That is a thing, and I think that it’s something that I’ll probably die never knowing is what triggered all this stuff.
Brianne: Yeah.
Tina: It’s such a mystery.
Brianne: Yeah. And it’s, I know with this stuff it could be anything. You could be doing the exact same thing every day, but there’s just an accumulation in your body where your body one time decides to stop putting up with it. Okay. So your friend suggests that you might have a problem with gluten, and you don’t even know what that means.
Tina: Right. So I do some research and find out like what I shouldn’t be eating, and all this time I’m still seeing my doctor. I started going like once a month, and then it turned into like once every two weeks cause I was just like, “I’m not giving up on this. I’m not going to stop because I know something’s really wrong with me.” You know your body, right? And after 10 years of diabetes, you know to pay attention to your body and not ignore symptoms. So I remember that February, I had said, “Okay, this month I’m strictly gluten-free. I’m not having any wheat, rye, barley, anything that I shouldn’t be having.” So I felt so much better. So I knew what it was for sure. There was just no doubt in my mind, but I wanted an official diagnosis, and I was seeing this doctor in Montreal, and he was getting so annoyed with me
Brianne: Your primary care doctor? Or like your family doctor? Yeah.
Tina: Yeah, exactly. He… because he was just so tired of telling me, “It’s IBS, and it’s not what you think.” And I just kept saying like, “Can you just please refer me to a gastroenterologist? I really just need to rule this out, and all it is is a blood work test.” And he was just like, “No, let’s not.” But I had just studied this for however many months or weeks or whatever, so I just wasn’t giving up on it. So finally he referred me and even the gastro doctor that I saw was like, “I don’t think so.” Even he was pushing me off,but he entertained me, and was like, “Okay, well we’ll do the blood test just to rule it out.” And so he did the blood test and three days later he phoned me and said, “You have celiac disease.”
Brianne: Wow. And so the blood tests for celiac… cause I know that some people are diagnosed with a scope, looking for the damage. So the blood test, is that an antibody test? Do you know?
Tina: I think so, yeah. I think so. It’s pretty tough when you’re living in a place where you don’t fully speak the language, and all my test results came back in French, and everything like that.
Brianne: Really?
Tina: Yeah. So it was kind of hard for me to tell, and to be completely honest with you, I was satisfied just with him saying, “You have celiac disease.”
Brianne: Sure.
Tina: Because that’s all I wanted to know. Yeah.
Brianne: Yeah. Especially I think with celiac in general, when you’ve done an elimination diet… if you do the elimination diet first, and you know that you feel better. It’s like, okay, well the diagnosis will be very helpful in convincing me that I need to keep doing this, but at the end of the day, I already know. I already know how to make myself feel better, so mostly I want to know how to maintain it or keep living with this.
Tina: Right. And especially knowing that… so he gives me the requisition to have the blood test done, but also says like… cause I had said to him, “I’m gluten-free right now, and I feel a lot better. I’m not 100%, but it’s a noticeable difference.” So he said, “Well, to do this test, you’re going to have to introduce it back into your diet.” So that was kind of crappy, but I just made the best of it and just ate everything that I missed eating.
Brianne: Yeah.
Tina: And obviously it was well worth it just to get my diagnosis, so I just did it. Yeah.
Brianne: Yeah. That’s, I mean, it’s understandable. I feel like… I think… I guess cause it’s the only autoimmune disease that’s so directly associated with food. So it’s the only one where you have to willingly make yourself sicker. As opposed to anything else where you know that if you go in during a flare, those tests will be more meaningful than when you’re feeling healthy, but it’s a choice that you have to make. It’s just tough.
Tina: Yeah, it’s a tough one. It’s a tough one, especially when you have been feeling so good, and especially coming out of feeling so bad for so long, and now you finally like, “Okay, something just clicked. I feel better.” And now you got to put yourself back into the fox’s den is just not great, but I just remember thinking at the time, “This is temporary and it’s not going to be for long.” So I just did what I had to do, and like I said, I was really happy with the outcome.
Brianne: Yeah, I mean, that’s great. And especially, so you got that diagnosis very quickly, I mean, very slowly, it sounds like that was a long time before you figured it out, but very quickly once you got the blood test.
Tina: It was horrible. Yeah, it’s horrible having doctors that just… you know when someone’s just like, “Oh my God, not you again.” And I don’t know. That was just such a horrible feeling, but I just was like, “Well, who’s going to advocate for me if I just listen to this guy? I’m not going to stop.” So I just kept pushing, and even by then, I was so sick. At the end of the year, before my diagnosis, in December I remember telling my boss who was working in Ontario, and I’ve been in Montreal. I said, “I’m going to be coming back home because I’m very sick and I don’t know what’s wrong with me and nobody’s listening to me here.” And then that’s when I really started doing a lot more with it. And so it was December that I said, “I’m coming back to Ontario.” February I went gluten-free, and I was diagnosed in April, and I moved home in June.
Brianne: And that would be like a year after when the symptoms that really amped up?
Tina: Pretty much. Yup. Because, like I said, I came home from Japan in May, and that’s when everything started. Literally I’d say within… I feel like it was within days or weeks, it was really soon. It took a really long time, which was really frustrating because my diabetes diagnosis happens so quickly. So that was just kind of like, “What the hell? Are you not hearing me? Why… I don’t get this.” So I just kept thinking like, “I need to go back home and see a doctor that understands me or is going to listen to me.”
Brianne: Yeah, that you trust.
Tina: So it just took a little bit of time, but it’s figured out. And it’s funny because it’s a very… it’s a kind of a more cautious disease. I don’t… I really hate it. I would take diabetes any day over a celiac disease, but you find your way. I know I talk to the people online that are brand new to celiac disease, and I can see how overwhelmed they are, but everything kind of just works out.
Brianne: Yeah. Yeah. And have you needed… are there other interventions besides a gluten free diet that you’ve discovered along the way? Or that’s really it, right?
Tina: That’s it.
Brianne: With celiac, yeah, which kind of… it’s good and bad compared to other autoimmune diseases.
Tina: It’s getting better. Yeah. It’s getting better, but a lot of other things kind of come with it. It’s not just, “Avoid gluten.” There’s other things that I’m really sensitive to that I’ve cut out of my diet as well, that probably everybody should cut out of their diet. But it’s just being aware of how you’re feeling and, “Oh, I ate that. I don’t feel good.” And sometimes it’s not just gluten.
Brianne: Yeah. Yeah. How do you eat now? I know some people with… across the board, kind of autoimmune diseases will play around with paleo or autoimmune paleo or keto even, or just different elimination diets. Have you… has any of that been interesting or helpful for you?
Tina: Yeah. It’s interesting that you said that. So when I first had celiac disease, I could pretty much just eat everything else and stay away from gluten, and I was fine. Then I started developing sensitivities, and now I can’t eat anything that has corn. It upsets my stomach just like I’ve been… like I’ve had something with gluten in it, even just all the way down to cornstarch. So I don’t have that at all, but I have to worry about other things because earlier this year I was diagnosed with lymphocytic colitis.
Brianne: Okay.
Tina: Yeah. So that kind of changed everything. So that had been going on for… so I guess… I think I’ve probably had that for about three years, even though… or maybe even four years actually, even though I was just recently diagnosed. Cause I think that one’s a little bit tougher to diagnose, but that definitely comes with all of its own food sensitivities on its own.
Brianne: And so for that, you say three or four years, so I’m just thinking about it. So you were diagnosed with celiac, and you stuck with the gluten free diet, and things were going pretty well for probably three or four years on that end as well. And then did you start to have similar symptoms or were there new symptoms?
Tina: Similar, and that’s what was so confusing about it because I was thinking like, “Oh my gosh, something’s sneaking in. Something I’m not aware of is sneaking into my food and I don’t know what it is.”
Brianne: “Where’s this contamination coming from?”
Tina: Yeah, exactly, but… it is a little bit different, but it’s the same. I guess once you kind of get used to it, you see the differences, but it is pretty similar. It’s just, I guess what kind of pinpoints is that… I know… okay, I made my own food. It was mostly… it could be even just whole food, so I know I’m not adding a bunch of other things or eating anything processed or whatever. And things like tomatoes or corn, the real sensitivity started with the colitis. What else bugs my stomach? Sugar for sure. Dairy for sure. Sometimes if I am… if I go a little bit too carb-heavy, even though I’m eating gluten-free bread, it really buggers up my stomach sometimes, too.
Brianne: The grains or the starch or something.
Tina: Yeah, exactly. And just all the little tiny ingredients in bread, this kind of flour, that kind of flour, rice flour, potato starch, so many things. The simpler I eat, the better it is. But sometimes you just want to have a piece of toast, you know?
Brianne: I do.
Tina: So it just gets kind of frustrating sometimes cause I’m looking at it and, I’m like, “This says gluten free. Why can’t I eat this? Why am I not digesting this?” Blueberries is another thing. Peas, there’s just some things that just don’t sit well with my stomach. I don’t strictly eat paleo or whole food diet, but I try to lean more to that just because it’s just simpler, I think. And I’m finding as of lately the smaller my meals are, the better. That’s just something I’ve just discovered in the last, I’d say, couple of weeks actually.
Brianne: Yeah. Frequent small meals where you know what everything is.
Tina: Yeah exactly.
Brianne: I’m sure that also helps take the mental load off when you… if you eat a couple of things at a time, then you can immediately pinpoint if there’s a problem instead of after Thanksgiving dinner or something when you’ve eaten every kind of food.
Tina: Oh my God, yeah. Yeah. And I am a big eater. I love my mom’s roast beef dinner or Thanksgiving dinner or a Christmas dinner. I love sweet potatoes, mashed potatoes, turkey, gravy. I love just loading up my plate and going to town, and laying on the floor after. But if I eat like that, I am so done. I’m so sick. So it’s been an adjustment, but it’s so worth it to be able to eat a meal, enjoy it, and then not feel sick and even scared after because it’s heart palpitations, upset stomach, in the bathroom, in, out of the bathroom, nobody wants that. So if I can… now that I have figured out, “Just take a little bit, enjoy it.” It’s not a big deal. I’ve definitely tried some paleo breads lately that seem to agree with me. And it’s really nice because it even helps my blood sugar as well. So that’s been nice. I started taking a drug at the end of February that I researched for a long time. So I’ve been taking that and just within the last, probably three weeks, I’m noticing an improvement in how I feel, and let’s just say bathroom habits. So that is such a relief because it seemed like everything I tried. I tried celery juice. I tried a whole food diet. Nothing was working.
Brianne: Yeah, it was never going all the way, kind of.
Tina: Exactly.
Brianne: So this was probably happening over the last three or four years, it sounds like if you started having symptoms again then. And did you start going back to the doctor at that time, or were you playing around with your diet, you know?
Tina: Oh my goodness. I was seeing naturopaths cause that’s kind of the way that I like to work is a little bit more, “Let’s get to the root cause,” as opposed to, “Medicine, medicine, medicine.”
Brianne: Totally.
Tina: So I was seeing a lot of naturopaths that weren’t doing anything for me at all. Like at all. Some would even say like, “Oh, try yoga.” I’m like…
Brianne: “I don’t need to pay you for that advice.”
Tina: Yeah, exactly. I was even thinking, “I’m really glad that I’m not actually paying for this, and it’s just coming off my benefits because this is not… this isn’t what I’m, I’m looking for, like, this is a food thing for me.” So it seems like I kind of get a little bit from each nutritionist or a naturopath that I see, but in the end, it’s kind of a combination. It’s a combination of what I do with everything and just being a little bit more smart about what I’m eating as opposed to what I want to eat, you know? Sometimes I know, “I’m probably going to be sick after I eat those, but I really love this cereal,” or that kind of stuff. Even though it is gluten free, I still know it’s going to upset my stomach, but… I can’t eat a chicken breast for breakfast. You know what I mean? Some of the paleo stuff is just too much for me. I can’t do that kind of stuff.
Brianne: Sometimes… it’s also a lot of work, when you mentioned paleo bread.
Tina: Yeah.
Brianne: I was thinking there’s some recipes that I love for special occasions, but the reality is that the amount of time it takes and even just sourcing ingredients is like… I think it’s amazing. I’m so glad that these recipes exist, and they can’t be everyday recipes. It just doesn’t work that way.
Tina: It’s so expensive.
Brianne: And it’s expensive! Okay, so I just want to ask a little bit more about the colitis. So how was that actually diagnosed in the end?
Tina: The colitis was diagnosed finally with my GI, and I had a colonoscopy, which I will say I was… I put it off for a long time. I actually had an upper scope, and she had said, “Okay, your celiac disease is in remission.” So I was like, “What the heck then? Because I am strictly gluten free, so I should be in remission. But why is nothing working for me?”
Brianne: Yeah that makes sense.
Tina: So she said, “Okay, we’re going to do a colonoscopy.” And I was terrified, but I was just like, “I need to know what’s wrong with me.” So I did it and it was actually a breeze. It’s nothing at all… not that I want one every weekend or anything.
Brianne: But it wasn’t… you were worried, and it wasn’t as bad as you expected.
Tina: Yeah. I was terrified for no reason. And it was so… it was obviously quick because I was put out, and as soon as I came out, she had said, “Okay, this is what’s going on.” And at that time she had said, “This is my favorite colitis to diagnose because it’s…” I know, right? “It’s easy to treat,” and then she just started like really pumping steroids.
Brianne: Steroids. Okay. Yeah. What was the type colitis again?
Tina: Lymphocytic.
Brianne: Lymphocytic. So what does that mean? How does that manifest? Do you know? The best that you know.
Tina: To be honest with you, I don’t. I don’t know.
Brianne: We don’t know, but that one person loves it. Of the colitis options.
Tina: Yeah, that’s what she said. Yeah. And to be honest with you, ] from some of the things that I’ve read about colitis, like ulcerative colitis and there’s another one, I’m not exactly sure how to pronounce it, starts with a C. It’s like collagenous, I think, colitis, which I think is similar to lymphocytic colitis. I feel like I do kind of have it a little bit easy, in terms of other different kinds of colitis, but trying to figure out how to tame a flare, especially when you’ve had a flare for five, six months is really, really tough.
Brianne: Yeah. And so they started you with steroids. And that must have been recently, right? Well,
Tina: I guess like last… I guess it was a year ago, roughly.
Brianne: A year
Tina: ago. So she gave me… so she prescribed steroids, and I guess I kind of remember it helping a little bit, but steroids aren’t really something that you want to stay on all the time. Right?
Brianne: Right.
Tina: So as soon as you come off, then everything’s back, and they don’t really talk about foods to avoid. It’s just like, “Here’s your medicine bye.” These are the fastest appointments I’ve ever had.
Brianne: And is there any other… I know you said you started a new one, so we’ll get to that, but at the time, are there any other medications that they recommend? Or was it just steroids to help get you out of this flare and then, “Good luck.”
Tina: There are a lot of other medications that I’ve heard about people talking about, but nothing that my doctor ever prescribed. She’s really, really one for steroids.
Brianne: Okay.
Tina: I’ve even said to her sometimes, “Hey, I’ve researched about this, like, could you look into it? And next time I come here, we could talk about this other drug?” And you know, my appointments are six and seven months apart, so I’d show up seven months later, “Oh, I forgot about that. I’m really sorry.” So then I’d say,”Okay, well this is the name of it again. Do you think for next time you can take a look at it?” I had even called her receptionist like a week before my appointment like, “Could you remind the doctor about this drug?” And show up for my appointment… not even a clue as to what I’m talking about. It’s just so disheartening. So I just took matters into my own hands.
Brianne: Yeah. That would be incredibly frustrating.
Tina: It is. Especially, like I said, your appointments are so far and few between, and they’re really short. And it’s just kinda like, “Well, the steroids worked the first time, so I’m going to write you a prescription for this.” And it’s just… I’m telling her, “I don’t want to do steroids. I don’t want steroids. I just… yeah, it works at the time, but I’m not going to take steroids for an extended amount of time. It doesn’t make any sense.”
Brianne: Yeah. It’s not a long term solution.
Tina: It’s really not.
Brianne: It’s not recommended to take steroids indefinitely and they are not symptom-free by any means. They definitely have side effects.
Tina: Yeah.
Brianne: So how was that research and what did you end up deciding that you wanted to try?
Tina: So the drug that I found out about was probably through… I think it was through a group that I follow on Facebook for the colitis that I have, and someone just popped on and they said like, “Hey guys, I’ve been taking a drug called LDN.”
Brianne: That’s what I thought it would be.
Tina: Yeah, low dose naltrexone and, “It’s working amazing. I haven’t had any side effects, and it is super awesome for people that have multiple autoimmune diseases.” And I thought, “Well, that’s me.” So I looked into it, and at the time… initially when I was looking into it, really the only way I could get it was by seeing a nurse practitioner, which would have been a $400 fee just to talk to someone. For whatever reason, this drug has nothing to do with OHIP.
Brianne: Yeah.
Tina: So… which I’m not exactly sure why, but it doesn’t. So that felt out of my reach at the time. I just thought, “Okay, you know what? I’m going to just keep going with, um, what I’m doing. I’ll just keep that kind of in my pocket as opposed to spending the money and trying it right away.”
Brianne: Right.
Tina: So after maybe my last appointment with my GI, which was in let’s say November, December, 2018 and her dismissing that approach, I just thought, “I’m going to look this up again. I’m going to do this.” And that time, my search landed me with a doctor that lives in Detroit, but drives into Windsor everyday for work. So he drives into Ontario so he can prescribe the drug.
Brianne: Okay, so he practices in Ontario?
Tina: Right. So I booked a 15 minute video appointment. It cost me $100, but it’s better than a couple hundred dollars.
Brianne: Yeah. Which just like to intervene, it’s so noteworthy because, I think I’ve said this before on the podcast, but the thing with OHIP, so Ontario’s health insurance plan, is that there’s no such thing as a copay. So you’re never paying for any kind of medical care, typically. And then if you have benefits that cover naturopathy, that’s what people pay for out of pocket. And then I’m going to ask about drug coverage after, but… I know you know that, and I know that, but I just want to say that for all the Americans and Australians and British people who are like, “Oh, I have to pay $200 every time I go to the doctor.” Or whatever.
Tina: And that’s why, maybe I sound spoiled or whatnot, but it leaves a bad taste in your mouth when you go to make an appointment, and it’s gonna… you have to fork out a couple of hundred dollars, so either way.
Brianne: Well it’s not a part of your mental budget. If you never pay for a doctor’s appointment, then you’re not keeping an emergency doctor fund.
Tina: Right.
Brianne: Not that… lots of people don’t have that anyway, but you know that that’s a thing to expect. And so if you’re not expecting that, of course it feels expensive! It is.
Tina: Exactly. Yeah.
Brianne: So you saw him, or you did the video consults.
Tina: Yeah, so we do the video conference, and he asked me some questions and we have a conversation and he prescribes… he gives me the, basically the countdown of what I’m going to do with the pills. And that I’m a good candidate for it. So he phoned or faxed the prescription to a compound pharmacy cause they actually have to build the medication, and I pick it up. And that was at the very end of February of this year. And I had all the pills… I didn’t see… so basically it’s one pill a night for two weeks, two pills a night for two weeks. You’re just building up to it. And nothing happened for months and months, I was just kind of taking them just because I was like, “I’m going to finish this bottle and just see what happens.”
Brianne: Yeah.
Tina: And it was literally the last, probably I’d say half handful of my pills that I started noticing something, and it was kind of scary because it wasn’t a hundred percent pleasant. I was having excruciating cramps, and just pain, I was just having a lot of pain, but I kind of was happy about it because I felt like, “Wow, something’s changing in my stomach. I haven’t felt like this ever.”
Brianne: Okay. So, it was like a new… something.
Tina: Yeah, it was new. Yeah. So I knew something was going on, and even still I feel like I’m kind of stuck in that phase. I’m not in a lot of pain, but when I’m eating properly, like I said, when I’m having a small meal, I’m not having my regular, like colitis day where it’s like, wake up in the morning, extreme pain, urgency to get to the bathroom. Now I can actually wake up, go in the kitchen, make a tea, have breakfast, and then maybe need to use the washroom before I go to work. And if any people are listening that have colits, you understand what I’m talking about. That’s the first thing you do every day. It’s a horrible routine. It really is a horrible routine. So to wake up and feel a little bit normal, like you can almost trust your body a little bit, feels pretty exciting.
Brianne: Yeah.
Tina: I thought that… I spoke with him, the doctor, the other day. He refilled my prescription. I think I got a little bit over zealous with it and said, “I think I want to go up to four pills because I’m starting to feel better and I’ve been taking three pills a night.” And he said, “Let’s not overdo it because it could actually bring on the opposite effect.” So I’m kind of just trying to stay patient with it, but oddly enough, at the same time probably I’d say maybe the month of January and February, I started noticing my hands and my elbows are really hurting overnight.
Brianne: Like joint swelling? Joint pain?
Tina: Yeah. Yeah, exactly. So when I talked with my doctor, my GI, she said, “That’s probably the onset of arthritis.” So that was not exciting. That’s scary, obviously, cause it’s just like, “Holy smokes, man. I’m 38 years old and I started to turn into like a slew of autoimmune issues.”
Brianne: Yeah, how many autoimmune diseases does one person need to deal with?
Tina: Yeah, exactly. Exactly. So since taking the LDN, I don’t have that pain anymore either. So that’s really, really been nice. And my blood sugars have improved as well, but I’m also taking cannabis oil, so I think that is mostly contributing to my blood sugars. But all around, I think… I really think that LDN is a really great drug, and I would recommend it for anyone that’s having trouble, or even just having their doctor always pushing steroids because that’s…
Brianne: It’s not addressing the root.
Tina: Yeah. It’s not a way to live. Like you don’t have longterm success with it.
Brianne: Yeah. And so for the LDN… so this doctor, he lives in detroit, crosses over to Windsor, you’d said. Was there… is there a compounding… wow. Words. Is there a compounding pharmacy? I was going to say family… compounding pharmacy in Ontario that does it?
Tina: Oh yeah. There’s lots of them.
Brianne: Okay, so you can get it without importing it or something.
Tina: That’s right. Yeah, which I was nervous about cause I didn’t know what a compounding pharmacy even was. So once I started looking them up, I realized there’s one right beside my doctor’s office, and there’s one… and that same pharmacy is right down the street from my work, so it worked out really well.
Brianne: Yeah. I know the same thing is true… LDN also in the States, you can only get it from a compounding pharmacy. It has.
Tina: Right.
Brianne: Right? So basically it’s that… now I have to think. Naltrexone is an… I think at the full dose that was studied and FDA-approved originally, it blocks your opioid receptors, and so it is like used to help people who are recovering from addiction.
Tina: That’s right.
Brianne: That’s the original on-label use, and that’s… the dosage is… I have no idea what it is, but I want to say if LDN is three milligrams, then the clinical dose is at least 30 or 60 or something, and so, I don’t know how…
Tina: Yeah, actually the doctor had mentioned that… when he was explaining the drug to me, he had mentioned that when giving it to people coming off of addiction, that they get like a hundred milligrams.
Brianne: Okay yeah. It’s really different.
Tina: Yeah. It’s so different, and then for people that are taking it for autoimmune diseases, the most you’ll really go up to is like four milligrams.
Brianne: Yeah. It’s a whole other thing. And I’ve seen it even recommended for fibro and ME, things where they don’t know yet what the pathology is, why it’s happening, but that some people with those kinds of conditions also find it really helpful because maybe it’s an immunomodulator. It needs to be studied better, but that’s why it’s not available mass market. Nobody’s actually… no drug company is selling it for this reason, and so it’s not available at this dose.
Tina: Yes. It’s really frustrating.
Brianne: Yeah. It’s astounding to me because it comes up in so many different conditions from so many different people, and when you look for the research, the research is so small, on a clinical level. And it seems like, “Holy cow, this is obviously helping a lot of people. Why on earth is it not…” Anyway, other things. So you have to… so medication… so you’re using LDN and then insulin… gosh, I’m doing well here… and LDN is out-of-pocket, I’m guessing?
Tina: It is. Yep.
Brianne: Is it affordable? I think… I know here it’s like 30 bucks a month or something, 35?
Tina: Actually for me… so I have to pay the doctor for my prescription, so I have to pay him $60 every time I get a refill, but he usually sets me up for three and four months at a time. And it’s out of… I pay a portion out-of-pocket. So I’m paying 20%, and then my benefits pay 80%. And so when I pay for it, it’s $44 so when I think about what 80% is, that’s like… that’s got to be an expensive drug.
Brianne: Yeah. And that’s for a couple of months at a time?
Tina: Yeah. Yeah. Thank goodness.
Brianne: Yeah. And I guess obviously price will depend on dosage too, in this case. And then so for insulin. How is insulin covered in Ontario?
Tina: Insulin is covered… well, for me it’s covered by my benefits 100%.
Brianne: Okay.
Tina: I just pay the dispensing fee.
Brianne: And that’s through work?
Tina: I’m really, really, really lucky.
Brianne: Yeah. Yeah.
Tina: All my supplies are actually covered through my benefits.
Brianne: Okay. And so that’s interesting. I just wonder… since as I’m sure you know, the cost of insulin in the States is bonkers and also a thing that people are talking about right now, but I know in Ontario expensive drugs are covered by, I think it’s called the Trillium plan, but…
Tina: Yeah, if you’re part of the Trillium plan… you would have to sign up for the Trillium plan just like you would for any benefit program, and then it’s taken care of. But yeah, I’ve done a lot of reading about people coming into Windsor as well for insulin. It’s horrible. Like it’s horrible that people are having to budget differently between food and insulin, and it just shouldn’t… that shouldn’t be, if you need something to live, and you need a drug to survive, then it’s… even if it’s not free, it should be provided to you at a decent fee… like a nominal fee that people can afford. I just don’t get it. I don’t understand that at all. It’s just pure greed. I think.
Brianne: I know. It’s so awful. It’s so so awful.
Tina: Yeah. Yeah.
Brianne: So, okay. And so you have benefits through your work that will cover… and the other supplies, which is what you were just talking about… like lancets and the little sticks, what are those called? You know what I mean. All the stuff for checking sugar.
Tina: Actually I use the Libre sensor. So that’s the sensor in the arm, and I just scan.
Brianne: Yeah.
Tina: So I use that. I haven’t used test strips in a little while. Thank goodness. It’s so nice to have a break from that. And every five years I’m on the… I get a new insulin pump. So I’m on a program called the assistive devices program in Ontario. And I actually just got a brand new insulin pump probably about two weeks ago. So a lot… I got… you get the pump, if there’s any things that go with it, like a transmitter or sensors and stuff like that, and you normally do have to pay out of pocket for that. Or if your benefits are good enough that they cover that, then it’s covered. But mine don’t cover it unfortunately, but that is covered through the provincial plan that I have, which I’m so lucky for.
Brianne: Yeah, and so I guess diabetes is one of the places where technology… since you were diagnosed now almost 20 years ago, you’ve seen huge changes in technology. That must’ve made it a lot easier compared to that… doing math and all the stuff that you were talking about at the beginning, that was overwhelming.
Tina: Absolutely.
Brianne: Is that almost all gone now? Like it’s all on autopilot between…
Tina: Yeah, pretty much. Yeah. I’m doing… I did about eight years with injections, and then… now this is my 10th year, pretty much, right? So I’m doing… managing my insulin through an insulin pump, and I would definitely rather have a pump than use a insulin pen. It’s nice to be able to not have the broadcast of like, “I’m a diabetic. Here’s my pager.” You know what I mean? But if I have to wear this little box on my hip, and it’s helping me all day long and all night long, then I’m going to do that. And it takes away the math like… I hated guessing that number because if you guess wrong, then you’re in big trouble.
Brianne: Right, right. It just really takes that… I can imagine that would be really nerve-wracking. You have to get it right. Of course.
Tina: I even just started adjusting my own pump, like if I notice, “Wow, I’ve been going low a lot in the morning.” I’m actually just becoming more confident to go and change my basal rates and things like that on my pump. It took me a really long time to do that, but kind of talking with my doctors and my diabetes educator and she’s just like, “You can do this stuff.” And it just feels like, “What, me? Me, do it by myself? That sounds crazy.” But it’s kind of better than waiting the three and four months to see a doctor, and then they drop it down a couple points and then you feel better. It’s like, “I could have been feeling better like all this time?” Sometimes it just takes a little bit of bravery. You find out you’re good. You’re fine. I’m not changing anything dramatically, so I don’t notice gigantic changes, but at least it’s putting me a little bit more in the driver’s seat as opposed to just always waiting for someone else to do it for me.
Brianne: Yeah, yeah. To trust yourself and kind of feel like you have agency.
Tina: Yeah. Yeah, why not?
Brianne: Totally. Okay, so we’re pretty much caught up to the present, it sounds like.
Tina: Yeah we are, totally.
Brianne: And you’re still managing some symptoms, but optimistic right now.
Tina: Yeah, I feel good right now. Yeah.
Brianne: Yeah. That’s awesome.
Tina: Yeah, it is!
Brianne: Yeah! And I was just wondering more or less how… so you worked, it sounds like all the way through this, even though there were times when it was definitely interfering with your ability to work.
Tina: Yeah.
Brianne: But how, like in your day-to-day life, how do you feel like this impacts you now?
Tina: If anything, sometimes I feel like it really affects my mental health sometimes. It just feels overwhelming sometimes to the point that I just need a day to myself sometimes just to rest. I said this to my grandmother the other day, rest is really underrated. It’s a important thing that people need, and I think sometimes you don’t take it. You don’t take the rest because you don’t give yourself permission to just say, “I need a day for myself.” It’s not about wanting attention or feeling sorry for yourself, but sometimes just knowing I’m going to feel better if I just sleep in a little bit or go to bed early or lay in bed and watch a movie or I’m not going to do anything this weekend. On a lot of the times that I’ve done that for myself, I feel a lot better long-term. But it takes a long time because I think some people feel like if they’re not being productive, if they’re not doing something, then they’re not… you’re just not worthy, or you’re wasting time or whatever. But sometimes you just need those days where you even just get up, have a shower, put on comfy clothes, and get back into bed. That’s my favorite thing to do so… Do I take many of those days? Not really. Sometimes you do have to give yourself the little extra push because I find if I do start taking them, I want more of them. But I think you know when you need one. Where it’s just like, “I need to do this today and I will do it if I have to.” So I think that is really, really important.
Brianne: Yeah, and I think there’s a trusting your body element to that too, of, “Oh, right. My body is telling me…” How ever your body is, it needs to slow down. And I absolutely agree on the other side, it’s such a fine line of, “I need to rest, and it’s going to feel really restorative, and I can just give my body and my brain a break,” and “I’ve been feeling kind of crappy and I’ve been in bed for three days and it’s starting to negatively impact my mental health.” It feels like a tightrope to kind of balance those two things.
Tina: Yeah. Definitely some days I just get up and I’m like, “I don’t want to get up, but I’m going to get up today and I’m going to just like clean up.” And you just kind of feel like, “Okay, cool. I did do something.” And then you just keep it going. And before you know it, you’re dressed and showered and you’re not on day four and five of pajamas and eating cereal out of a box. So it’s important to know when, “Okay, it’s starting to get to be an issue,” or “I just needed a rest. ” Like you said, it is a fine line, but you have to also be like really self-aware of how long you can take for time for yourself.
Brianne: Yeah, it’s a balance.
Tina: Definitely.
Brianne: Yeah. Well, is there anything else in the whole world of health and self-care and chronic illness that we haven’t talked about that you’ve been thinking about?
Tina: I don’t think so. I feel like I’ve been able to add in the important parts for me, just being an advocate for yourself and being self-aware and trusting yourself when your body’s doing like weird stuff, you know? Like, “This isn’t normal,” or “This has been going on for too long.” Don’t give up on yourself, and even though you are going to see a medical professional, they’re not always right. They’re just human beings like us, too, and they can be judgmental, and they can be wrong, and they can be right, and they can be helpful. It’s a mixed bag, but if you’re not getting what you need, you have to keep going and you have to do what you need to do for yourself. And I think lastly, like I said, giving yourself permission to rest, especially with chronic illness is sometimes tough because it’s invisible, and you look healthy, and you look well, and you’re afraid that people are going to think, “Yeah, right” or judge, you and whatever. But you really have to listen to yourself. And if there’s anything that I have been pretty happy about with all these diagnosis is that I am really aware of how I’m feeling and what I need. And I really just go with it.
Brianne: Yeah.
Tina: And I think sometimes too, if you don’t have that… you don’t… maybe even treat yourself as well as you could because you’re getting along just fine, you know?
Brianne: Yeah. It’s not that I’m advocating that everyone should get sick, but when you do get sick, you learn that your body is sending you messages for a reason. Cause when you’re healthy, it’s easy to ignore, just needing to rest and all that stuff. You’re like, “Oh, I can tough it out.” But once you learn this stuff, you realize that sometimes toughing it out as not the answe, often toughing it out is not the answer.
Tina: Yeah. And you can’t keep pushing yourself because then sometimes maybe worse things can happen.
Brianne: Yeah, totally. That’s the thing.
Tina: Yeah.
Brianne: Okay. Well, thank you so much for sharing your story with me. It’s been up and down, and there’s lots of going on, and I think I said this to you, I haven’t talked to anybody with diabetes yet, so I’m glad to get that perspective.
Tina: Oh, awesome. I’m glad I could share it, and hopefully added something positive to it because it’s… yeah, it’s not going away. And as of right now, there’s not a cure, but it’s not a death sentence. It’s definitely manageable, and taking interest in it makes it more of a part of your life, as opposed to like a chore or anything like that. Like, yeah, sure. I’d love a day off sometimes, but it’s just… accept it and move on and find out what works for you. I love participating in research trials and doing fundraising and positive things. It kind of keeps you involved in your community, and you’re learning about new things with technology advances and things like that. So it kinda just puts a bit of a positive spin on it, for me anyways.
Brianne: Yeah. Getting involved in patient communities and feeling a part of it so you’re not just kind of waiting for someone else to tell you what’s going on.
Tina: Yeah. You don’t feel alone.
Brianne: Yeah. Yeah. That’s a big one.
[guitar riff]
Thank you for listening to episode 39 of No End In Sight!
You can find Tina on instagram at @tinabeare, and you can find me on instagram and twitter @bennessb. You can find this show on instagram @no.end.in.sight.pod. I’m still slow on posts because I’m still behind on transcripts, but that’ll pick up again once those pick up again, which should be soon. I know I keep saying that, but I also keep meaning it!
Next week I’ll be talking to a woman managing ME and lyme, so make sure you subscribe in your podcast app to find out when new episodes are available. And if you’ve been enjoying this show, I would be so grateful if you’d leave a review on Apple Podcasts so that new listeners know what to expect from the show.
As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.
And finally:
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. One of these days I’m going to get to work on some spring and summer patterns. I’d love it if you checked us out at digitalartisanal.com.