So I hope everyone had a wonderful week and Thanksgiving day spending time with family and friends. This week I’m ending off National Diabetes Awareness Month with 2 more interviews. Today’s post I’m talking with Kristen Hatten. I hope you can take some time to read some of her story today. Enjoy!
What type of diabetes do you have?
Kristen: I have Type 1 diabetes. I might have LADA. Providers go back and forth on the diagnosis but essentially told me it doesn’t matter because they’re treated the same way at this point.
How long have you had diabetes?
K: I’ve had diabetes for 10 years.
How did you manage growing up?
K: I was diagnosed when I was 22, so it wasn’t an issue when I was growing up. There are unique challenges with being diagnosed as a young adult, though.
Did you hide your diabetes?
K: Nope. Never. I think that comes with being diagnosed as an adult rather than a child.
Was it tough on your sibling(s) if you had any, with you being the center of attention?
K: I have a brother who’s three years older than me, but like I’ve mentioned above, I wasn’t diagnosed in childhood, so it didn’t affect him at all.
What was the hardest for you and your family—emotionally? Or financially?
K: Probably emotionally, to be honest. I’m fortunate that my parents have helped me with my medical expenses until I was able to get on my feet (when I finished my doctorate) and I have had pretty decent insurance. Emotionally, though, it has been a bit of a roller coaster. When I was first diagnosed I went through a huge wave of emotion—this is forever. It was hard to wrap my mind around, and I still struggle with it off and on, ten years later. It also made me worry I couldn’t have a child, which fortunately wasn’t the case—I have a healthy 17-month-old daughter.
In general, diabetes is emotionally and financially taxing. It’s a 24-hour-a-day job without any breaks whatsoever. What other people produce normally, we have to get store-bought (insulin), and our lives could really end in an instant. But diabetes has become the butt of a lot of jokes, unfortunately, and that also wears thin after a while.
What treatment do you use to treat your diabetes?
K: I use an insulin pump (Tandem tslim X2) and glucose sensor (Dexcom G6). I use Novolog in my pump.
How often do you have to test your glucose levels?
K: Since starting the G6… never. I’m spoiled now. Before the G6 I was on the G5, and then I would test about 4-5 times a day. Before being on a sensor, I tested probably 6 times a day. When pregnant, I tested up to 20 times a day.
How often do you need to change your pump?
K: Whenever I change my pump or I have a bad site. I change my pump every 3-4 days.
What kind of insulin do you take?
What insulins have you had throughout your diabetic career?
K: I’ve been on Novolog the entire time. Before I was on a pump, I was also on Levemir and for a short while I was on Symlin (which I don’t think is technically an insulin, but it came in an injectable pen).
How well do you think you manage your diabetes?
K: It could always be better. I’ve never eaten food without taking insulin for it (except for a low, of course), but I also slacked significantly on testing before the G6. I was burnt out. I do go see my endocrinologist regularly. For the most part, I’m happy with my management. I think I could be eating better and that would help me control my levels.
Can you recognize the symptoms of a low/high blood sugar?
What symptoms do you get, and how often?
K: For lows, I get spacey, shaky, dizzy, sweaty, nauseous, faint… It feels like the world is slipping away. Sometimes I go numb or it’s hard to breathe. Twice I’ve passed out—one of those times I hit my head on a shelf (I was in Target). Now that I have the G6 I don’t get lows nearly as often; I’d say before the sensor I would get lows multiple times a week or sometimes multiple times a day. Now I get maybe one a week, if that. (This is starting to read like an advertisement for the G6!)
For highs, I get extremely thirsty. Everything feels dry, especially my eyes. It reminds me of the month or two before I was diagnosed when I would literally drink five glasses of a beverage before our food even came out at a restaurant (lemonade—oops). I also get very tired, sluggish, and cranky. I still do get highs but nowhere near as significant; usually they cap out around 250 unless I’m sick. If I’m sick, all bets are off. I probably see highs when I’m healthy about once a day, if you’re counting the “up to 250” range.
I usually have what I call “hangovers” after a bad low or a bad high. I tend to pinball around a bit if I hit extremes and that’s just exhausting.
What do you eat for breakfast/lunch/dinner? When?
K: I don’t have a “diabetic diet.” I don’t think it’s sustainable to eat low or no carb—at least for me. If it works for other people, that’s fantastic. For me, though, the only things I really avoid are things I can’t manage. For example, I don’t drink regular soda unless I’m low. I avoid Chinese food entirely because no matter how I bolus for it, I end up skyrocketing and then crashing down. I eat when I’m hungry.
Do you vary your insulin dose if you eat something that is really not good for you?
K: I’m not sure how to take this question. It seems like a question for people with T2 who use insulin. I program the number of carbs I’m eating into my pump along with my blood sugar, and go with whatever dose it recommends. I do have different basal settings throughout the day, but not bolus. I know I can set different boluses but I’ve never needed to (yet).
The only variation in bolusing I use is to use the extended bolus when I eat something that is also high in fat (e.g., pizza) so I can account for the fat delaying the absorption of the carbs.
Do you eat snacks in between meals? Soda?
K: I eat snacks if I’m hungry. I tend to graze throughout the day instead of eating “meals.” I drink diet soda occasionally.
Do you eat vegetables? Drink lots of water?
K: Honestly, I don’t eat vegetables as much as I should. I’m vigilant about my daughter getting vegetables and then I don’t eat mine… I do drink a ton of water, though. I always have a tumbler of ice water with me everywhere I go.
Do you ever skip meals?
K: Sometimes I’ll skip breakfast. It’s a bad habit I formed as a teenager. I will try to eat something, though, and not let my body try to run off coffee alone.
Do you find the diet restrictive?
K: Not really. I get annoyed that I can’t eat Chinese food or have something just because I feel like it. For example, I’m not going to eat pizza or fries or something if my BG has been high all day. I also get annoyed when I’m full, I don’t want any more food, but I’ve already taken insulin for it or I’m low, so I have to eat. Not really the “restrictive” I think you’re asking about, though.
Do you get annoyed when people ask if you should be eating a certain food?
K: Yes. Mind your own damn business. I’m using my pancreas the way I want, you use your pancreas the way you want. I don’t police what other people eat and they shouldn’t police the way I eat.
Do you do anything else to manage diabetes better?
K: I have a lot of chronic illnesses that cause extreme fatigue, but when I was feeling better, I would exercise around 3-5 times a week. We had a gym at our apartment complex and I would have a routine of going there after work. It did help my management overall, but I’m just too fatigued to do it now.
What is the hardest part of being diabetic? And the best part?
K: This answer will probably be unbalanced. The hardest part about being a diabetic is knowing that if you don’t mimic your pancreas perfectly (and hell, even if you do), you risk massive damage to your body. I don’t have to list out all the potential complications and horror stories here. It’s incredibly stressful trying to imitate what should be happening naturally in your body, and I think people underestimate how tough that is. It’s also tough because you could be doing your absolute best, and still face those complications. But you won’t know that they’re coming. I get terrified every time I go to the ophthalmologist for a retina scan. I’ve never had issues with my eyes other than needing contacts and some occasionally dryness, but I fear that that’s the day they’ll tell me I’m going blind.
The best part… I guess it’s shown me how resilient I am. It also gave me an area of interest and passion. I completed my PhD in Communication, Organizing Processes & Chronic Illness, with my dissertation focused on young adults with diabetes as an underserved population.
Does your diabetes cause you any other problems?
K: If this question is asking about physical problems, no. I’m fortunate that as of now I have no permanent physical damage related to diabetes. I am more prone to infections, I can’t use steroids, and I have other autoimmune things going on (like my thyroid) but I don’t know that all of that qualifies for this question.
What would you like a non-diabetic to know about having diabetes?
K: First, it’s not a joke. You can laugh at Wilford Brimley and all the other memes, you can say “diabetes!” when you see a sugary dessert, but you’ll never understand the anxiety, depression, hopelessness, and loss of control that comes with your pancreas deciding to give up the ghost. One of your internal organs trying to kill you and you having to take over its job full-time is not a joke.
Second, Type 1 and Type 2 are different. One isn’t “better” or “worse” (please don’t ask me if I have the “bad kind” of diabetes—what is the good kind?) and both are a pain. But they are different.
Third, you might want to desperately relate to someone when they tell you they have diabetes. I get it. You want to connect, to be a part of the relationship. But don’t go to, “My grandma had that and she went blind!” How do you think that feels, hearing that as someone with diabetes? I already know that’s a risk. It’s shoved in my face every day. You telling me that doesn’t help in any way, it doesn’t make me want to connect with you, and it’s rude.
Fourth, there is no miracle cure that will mean I’ll never have to take insulin again. Diet and exercise can help you manage, but they will not cure T1 (or, technically, T2). Insulin is not a cure; it is maintenance. Cinnamon, okra water, supplements, CBD oil, and standing on your head in a Mississippi river under the full moon won’t cure diabetes either. Don’t you think I would have tried any and all of that if I thought I could be cured, random person in the supermarket? You’re not helping, and I don’t want to buy anything from your multi-level marketing scheme.
Fifth (and finally!), no, I can’t test or bolus somewhere else. I’m sorry that me using my pancreas in public is uncomfortable for you. I’m not going to stop. Unless you want to go to the bathroom to use your pancreas, I’m not going to either.
I had a bad site when I was in the Denver airport, so I went to the bathroom to use a syringe and insulin (they had a sharps container and I like to minimize the distance between the open needle and a sharps container—I have injected in public before and just saved the needle for the next sharps container if there wasn’t one around). Even in the bathroom, a woman gave me a dirty look like I was injecting drugs. Yup. Insulin. Into my stomach. (Really, Carol? Do you think people inject heroin into their stomachs?) So you can’t win. I refuse to go to the bathroom just to make you feel comfortable. There are a billion other places you can look instead of at me, taking my medicine.
What would you tell someone who has just been diagnosed with diabetes?
K: It might feel overwhelming, but I promise you, life isn’t over. You need to take it seriously, but you can live your life with this. Find support, not just instrumental (though that’s important—go to your endo and find one you like!); you need emotional support.
Importantly: let yourself grieve. People don’t generally acknowledge the grief that comes with a diagnosis that isn’t immediately terminal. If someone is diagnosed with something terminal, we can accept that they will grieve that. But what about something that could be terminal at any moment? Something you have to constantly manage to keep from dying or being permanently incapacitated? People tend to have an unspoken expectation that you will either get better, or you will die. Chronic illnesses like diabetes live in this gray area, a limbo that people aren’t comfortable with. You get the sense that people are waiting for you to just get better already—which you won’t. This isn’t a flu.
It can be difficult to deal with that on your own, and it can be difficult to face. So let yourself grieve. Grieve the person that you were before diabetes arrived, and then celebrate the person it’s helped you become. Grieve the fact that your life is changing, has changed, and allow yourself to feel sadness, despair, frustration, and anger. It will come in waves. Once you get self-care habits in place, it will be easier to manage. But 10 years down the line, I still get hit by a wall of grief now and again. And that’s okay. You’re human. Let yourself be. Then pick yourself up and show your pancreas that you’re running the show.
Who do you get support from? Who treats you?
K: There are so many different types of support, so I’ll just answer with the first two categories that come to mind.
Physically, I get support from my endocrinologist. He’s one of the only ones in the area but he is beyond amazing (once you pin him down). I also have a good pharmacist.
Emotionally, I have my husband, my parents, and to a lesser extent, my friends. It’s not that my friends aren’t supportive—they’re great—but they don’t have a full understanding of what it’s like. I guess my husband and parents don’t either, but they know me better than anyone else. It might be odd to say, but one of my cats (her name is Adelaide) is also super supportive. When I’m not feeling well or I’m going low or high, she knows it. She comes up and nudges me and loves on me. She’s my little buddy. Finally, I go to therapy once a week. I have anxiety and depression (partially from having T1, but I was diagnosed with both before I was diagnosed with T1) and while my therapist can’t magically fix everything, she helps me cope and build up resilience. Without that, I don’t know if I could push through some days.
I really enjoyed reading Kristen’s story. She definitely wrote quite a bit, but that just made her story more enjoyable. I hope you can take just a little bit of time and read her story. Just one more story coming Friday. I hope everyone has had a wonderful month. Can’t wait to see what December will have in store!