Hi, I am Liz Capco, and I have been living with type 2 diabetes since 2015, so a little over eight years now. And about a year ago, I started on insulin. For the most part, I've been able to manage my diabetes with other medications, oral medications, but I had gotten to the point where I wanted to try conceiving. And so I was told if I got pregnant that I would have to be on insulin. And so I talked to my provider and I said, you know, let's just start insulin now so that way I can get used to it. I had heard how difficult it can be to be on insulin therapy, and so I wanted to be proactive and get a head start on it. I was put on long-acting insulin and short-acting insulin for basal and bolus, but I wasn't really explained on, and I wasn't given any instructions on how I would be impacted by insulin therapy. And so there was a lot of frustrations because I was told just take this many units at each meal and you should be good. Well, I didn't always eat the same thing at each meal. And so I would get really frustrated when, you know, I would take my 12 units, but then I would go low, or I would take my 12 units the next day, and I would be so high that I would freak out because I was taking this as this is supposed to be a trial run for when I'm pregnant. And so the thought of, you know, me being in my two fifties while I'm pregnant, you know, I've been told about all these complications and high risks. And so I felt like such a failure whenever I would go into, you know, above 180, above 150, which, you know, the targets were different because I was afraid that like, this is something that could happen during pregnancy and I'm putting my baby at risk. So while I wasn't pregnant yet, I had a lot of fear now over insulin therapy, fear around not being, not doing enough to take care of my body, to take care of my future baby. And I was never taught, you know, how to adjust my own insulin. I was never taught what the difference between insulin types were. And it wasn't until I, it wasn't until I eventually had to like break up with my provider. My provider was a pharmacist. And so there's no endocrinologist near me. So pharmacist is the only provider I meet with to go over my diabetes medications. And so I never got any sort of, you know, insulin introduction crash course or anything. I was just told, here's a prescription, here's how much you take at each meals. You know, here's roughly how many carbs you need to take. Well, I was so frustrated that like my numbers were never in target. I was, my time and range had drastically decreased and I just felt like such a failure that I was so frustrated. And like I said, I ended up breaking up with my provider and finding help through the integrated diabetes services. And so I worked with them. This was out of pocket. This is not something that my insurance covered. And so I had to pay, I had to go out of my way in order to find someone that could properly teach me insulin therapy. And in those like two weeks that I was working with them, I drastically learned more, not only about how insulin works, but also about how insulin works with my body. And I was able to get a better understanding of how, you know, why I'm taking certain insulin at certain times, why I always spike after, you know, I'm working out versus if I'm walking. And so they really helped me understand my personalized insulin therapy versus just here's your type two, here's how much insulin you just take at each meal. And so I feel like there was a drastic difference between what type of insulin therapy is taught to type twos versus type ones. I feel like type twos don't get as much information and, you know, that drastically impacts how we're able to manage our own diabetes. So that was a really big frustration. That was once I actually had access to my insulin. So once I started working with IDS, with the integrated diabetes services, I realized how difficult it is to actually get insulin. So they wanted me to start with an inpen because of the many benefits of it connecting with my continuous glucose monitor. I really loved being able to make this as simple as possible, even just figuring out how much insulin to give myself if I'm still, you know, out of target after a meal, if I didn't bowl this properly. I hated having to figure out like, OK, well, how much do I still have on board? How much should I give myself? And of course, there's always that fear of giving myself too much insulin and then going low. And so having the inpen and having the app with it that calculates that for you and keeps track of all these things for you was just such a relief. But I had to fight so hard just to get my inpen. And then I had to fight even harder to get the cartridges that go with it. So my provider worked with the integrated diabetes services to get the prescription over to my pharmacy. But then my insurance wouldn't cover it. So I paid with the manufacturer coupon. I was able to pay for my inpen. That was one hurdle, you know, overcome. Well, they sent me an inpen for Novalog and my insurance refused to cover the cartridges for the Novalog pen. They only covered the Humalog pen cartridges. And so I was not able to get a new Humalog pen because you can only refill one prescription per year, but I also couldn't get the right cartridges for it. And so the pharmacy and the providers were not able to communicate that to each other. And so after 26, I remember this number exactly, 26 phone calls to the pharmacy, 12 phone calls to my provider to try to figure out where the miscommunication is, what paperwork needs to be sent, where I ended up having to call Medtronic directly, the manufacturer directly, in order to find, to like discuss the situation with them and tell them, you know, there's an issue with my insurance. I have the wrong pen. I need these cartridges. Like, what are my options? And I ended up spending so many hours of my day, of my work day. I'm very fortunate that I work remotely. So I have that option to figure out how I was going to get my inpen and the cartridges that go together. I got more help from the diabetes community that was, you know, offering me their own cartridges, their own insulins, because by this point I had waited so long to get my inpen and cartridges that my current insulin was running out. And so this was the first time where I was genuinely afraid that I was not going to be able to get insulin. And I didn't know what I was going to do to manage my own diabetes if I wasn't able to get a prescription soon enough. And so after talking to the manufacturer for hours, going back and forth, sending the right documents, figuring out who's fax number I needed to send things to, they were actually able to switch out my inpen. So I had to send my current inpen back to the manufacturer and they sent me a replacement one. And so then after that, I was able to get my cartridges and it took close to a month of just phone calls back and forth of me advocating for myself, to the manufacturer, to my providers, to my insurance, to the pharmacy. And I'm very fortunate that I'm someone that, you know, English is my first language. So I can speak very easily to whoever I need to talk to. That's not something everyone has access to. That I was able to think outside of the box and think of, you know, what if I try calling the manufacturer? Not everyone has that time to do that or the background to know what types of questions to ask. And I'm someone that's very persistent. And that is, it was exhausting and it was scary. And not a lot of people are able to do that for themselves. And so they go, you know, months, years without getting the treatments that they need, the insulin that they need. And so that, that was probably one of the scariest moments of my diabetes management in the past eight years that I've lived with it. And it was just trying to get the right insulin and then starting the whole journey of like figuring out my own insulin therapy. And so once I was able to actually learn how to titrate to myself, it was a lot of responsibility that was very overwhelming. Having to constantly carry more things around with me before starting insulin therapy. I used to use, you know, once a week injections. So less materials that I had to carry in my purse, in my bag. I didn't always have to carry as many low snacks or my glycogen. And so it was another burden that I kind of had to deal with of like carrying around my diabetes diaper bag of my needles, my insulin. You know, making sure, especially when I was traveling, if I had enough supplies and trying to plan for that. These were all things that my provider didn't tell me. Like they gave me a prescription and they told me how much to take at each mealtime. But they didn't tell me, you know, how to prepare to actually live with it every day. And that was where the diabetes community was way more helpful to me, to give me these tips and tricks of how to actually live with it every day. And so once I actually figured out kind of how to test my basal insulin to see if it's the right amount, if I was giving myself, you know. One thing that I was not told from my original diagnosis up until now, at any point did a provider never told me exactly what carbs are. I know it sounds really silly and really wild to think, but I was given a pamphlet that said how many carbs are in, you know, each food roughly. But for the longest time, I was actually only giving myself insulin for like bread or pasta, like the quote unquote classic carbohydrates. And so I didn't realize, you know, how much carbohydrates are in fruits, how much carbohydrates are in even for like proteins and fats, that I would have to take insulin for that if I ate more than 25 grams of it. And so when I first started insulin therapy and titrating my insulin for myself, I would try to do low carb and then just eat more fats and eat more protein to stay full, but then my sugars would go up. And so now I was giving myself more insulin to bring my sugars back down, and then I was gaining weight. And so it got to the point where I was crying in my closet in a fetal position because I was gaining weight. I was not meeting my target goals. My sugars were high all the time. And then I was crashing and having lows. And I was so scared that I was never going to be able to get pregnant, that I was never going to be able to do this during pregnancy because I'm already failing at it. And I'm not even pregnant yet. And I had to quit. I couldn't handle it anymore. I had no support. I couldn't afford to continue paying out of pocket to work with IDS. And so I had to take a break from trying to conceive and take a break from having to be on insulin therapy because it was just way too overwhelming of too much to track, too much to carry, not really knowing enough and just always feeling like a failure because nothing was ever working as well for me. And that was probably one of the hardest times in my diabetes management. I really struggled with diabetes, distress, diabetes, burnout. It got to a point where I just, I wasn't taking any medication because I didn't want, I couldn't bring myself to deal with it anymore. And I developed a fear of not necessarily a fear, but an unhealthy obsession with eating. And so, because my insulin therapy wasn't exactly what I needed it to be, what my body needed it to be, I ended up developing this mentality of, I should just not eat because then I won't have to take insulin for food, right? If there's no food coming in, then I don't need to take insulin. And so I would just not eat. I would go the whole day without eating. And even if I was hungry, I just didn't want to have to take insulin because I didn't want to gain more weight. I didn't want to deal with all the highs and lows and trying to figure out what I'm doing wrong. And so I had to stop. And it was unfortunate because that's prolonged my journey with trying to conceive. It's gotten in the way of my relationship with food, my relationship with eating that now I have to really work hard at. And I think the most important part of the patient perspective that health professionals, that healthcare providers need to understand is that we are trying. The best thing you can do is give us the benefit of doubt that we are doing the best we can with what we have. And so instead of making assumptions that we're not trying, ask the question of what do we have? What do we have access to? Do you have time to call your pharmacy to see why your prescription's not being refilled? Do you have time to call your insurance? Do you have access to all the copy cards that you need? Can you afford your medications? There's nothing. I think the most embarrassing thing I've ever experienced in my life has been going to the pharmacy, being told my medication's $900 and then crying at the pharmacy desk because I can't afford this. And now I feel like my life is being put a price tag on. My life has a price tag that I can't afford and I can't afford to live. And so it's so humiliating to feel that way. And that's the way that most patients feel when we can't afford things. And it's like, well, couldn't someone at the doctor's office help me run this by my insurance before I got to the counter to avoid this situation? So any sort of help like that makes such a big difference for someone who's already trying their hardest and feels like they're failing. The other part is incorporating our culture and incorporating mental health care. Since I've been diagnosed, not once was I ever asked, would you like to see a therapist or a counselor for your mental health to deal with living with diabetes, to deal with living with a chronic condition? Not once. That's something I had to do on my own. That's something I had to do separately. That's something I had to advocate and ask for. But that should be a standard for all diabetes management, that we all need that extra help because this is a very exhausting, tiresome, 24-7 condition. And there's no way anyone can do this without having that support. And so it's better to always ask and offer that support than to just assume they don't need it. Because most of the times we definitely need it. So please listen to us. If we tell you something's not working, then it's not working. It's not that we're not trying hard enough. It's that we have tried and it's still not working. And so there's so many more options coming out to help us that we need to be told what all of our options are instead of, I understand there's standards of care. You have to go in an order of procedure. But I wasted so many years trying to figure out which medications work the best for me instead of my provider being knowledgeable about all my options and saying, hey, let's not do metformin because you already have IBS. You already have stomach and GI issues. Let's go with a different medication instead that we know will still benefit you, but has less GI side effects. So having that kind of foresight and knowledge to share with your patients would save so much time, save so many side effects, save so many bathroom trips that it makes diabetes management just a little bit easier. And we truly are looking to you for guidance. There's only so much that we can look up, right? We Google things and not everyone knows the difference between credible sources, between where to go get their information from. And so if we can get reliable information from our providers that we're going to and expecting to be knowledgeable, that's something that I think is probably one of the most important things you can do to help your patients. Thank you.

Liz Capco

type 2 diabetes

insulin therapy

access to insulin

healthcare providers