Have you ever had a doctor’s appointment during which you get praise from said doctor?
This was a completely foreign concept for me until recently, despite having lived with Type 1 Diabetes for 29 years.
But as I’ve managed to gain better insight into the illness that co-habits my body, and therefore slightly better control, there have been more and more positive encouragement coming form my health team.
Just a couple of years ago, I would always be scared of going to the doctors, any doctor I have (and I have a few).
Scared of the results, scared of what they might find this time.
Scared of being told off, scared of being disappointed in myself.
Scared of being hurt and a failure. Scared of the amount of work that lay ahead of me.
Because that’s what it had been like all my life.
Every doctors appointment until recently, had been one of disappointment, hurt, even tears, and after, not-being-bothered – because why bother if I always get the same sh*t shoved at me by the doctors?
Let’s not turn this into too much of a sobby victim story though.
About a year ago, when I had finished the education for my pump with my lovely diabetes educator, she told me I was one of her best patients.
After having grown up with the notion that doctors (and nurses) are equal to the evil spawn of something ugly, I was stunned for a second.
And then filled with love. Love, gratitude, and appreciation.
Not necessarily for diabetes, but rather for the advancements I had made by that point.
It was probably my first (and to this day, only) time I’ve performed a little one-man boogie in a doctor’s office.
It’s incredibly what a little doctor’s praise can do!
It spurs you on, keeps you going and at least it helps me when the going gets extra tough (which it inevitably does, considering it’s diabetes we’re talking about.)
And then today (aka the-second-time-my-jaw-dropped-through-the floor-at-my-doctor’s-office), at my check up, my doctor goes to me: “you’re one of my best patients. You seem much more relaxed about diabetes now than when I first met you.”
Wait? Did I hear that correctly?
My immediate reaction was to ask if she could put it in writing. She answered that she would if I really wanted her to.
To the point: yes. That might very well be true that I am, as I don’t know a single of her other patients. And I’m super grateful that I’ve managed to get to where I am today.
But I don’t think she has any idea of just how much work I’ve put into gaining this clarity I now have of diabetes. Which doesn’t, by any means, I’m anywhere near full understanding of it. It just means that I’ve made some progress in the recent years.
A few examples:
I’ve had to say no to things I really wanted to do because my blood sugar wasn’t cooperating.
There have been some late nights…
,,,,and early mornings…
…including wake ups in the middle of the night.
A copious and endless amount of (painful) finger pricks, injections, pump site insertions and CGM sensor insertions.
Carrying medical equipment around, big handbags have been of benefit. My shoulders and neck muscles do not agree.
Snacks, snacks and more snacks.
A huge part has been the mental work I’ve done. Truly coming to terms with diabetes is not an easy task, and is usually completely overlooked by the medical community. I’ve meditated for hours, and now I notice a difference in my blood sugars when I don’t do it! Stress is closely linked to blood sugars, so it’s really important to find ways to release stress. A newer tool I’ve been using is EFT tapping to try to get past the bigger concerns regarding diabetes.
Eating well and according to diabetes, which, for me, means very low carb.
Having to play my own pancreas. On the outside. With zero communication from the other organs that play a part, like the liver, for example.
Drinking lots of water. I’d be so rich if I had a penny for every liter of water I’ve drank!
Exercising and trying to figure out how it works. Sometimes exercise makes my blood sugar high, sometimes low, sometimes the same and sometimes the effect doesn’t come until 12 hours later (depending on how strenuous the exercise was). What on earth do I do with my basal settings?!
Speaking of which, figuring out everyday things like flights, how to eat on the road, restaurants, walking too much (and at irregular times!), drinking alcohol, combining an outfit to fit medical devices as well as how to solve the caffeine question, have all been part of the journey so far.
And that’s just to say what it has taken so far. It definitely doesn’t mean that it will always stay the same. Diabetes is a very dynamic and constantly ever-changing partner to have by your side.
But, this is where it really pays off to have a carefully selected and well-researched health team.
Because even if they don’t know exactly what you’re going through, they’re willing to understand and make arrangements for you.
Sometimes, working on my own can feel slightly schizophrenic.
I know you have tons of questions for me.
And today you’ll get some of them answered!
I’ve done an interview with none other than my fabulous self. I asked myself, included the ones from you (and googled some) questions to answer.
So here we go, here is the GrainBrain.ch interview with Hanna Boëthius:
GrainBrain: What type of diabetes do you have? Hanna Boëthius: I have Type 1 Diabetes.
GB: How long have you had diabetes? HB: I was diagnosed with diabetes at the age of 2, 29 years ago now.
GB: How did you manage, growing up? Did you hide your diabetes? HB: I had my moments. Up until the age of about 10, my parents had full control of the diabetes and me. That’s also when I learned how to do my own injections, which gave me a little more freedom. I can’t say I ever took pride in having diabetes before.
Being a teenager with T1D was difficult for me, I wanted nothing else than to be like “everybody else”, and I felt the diabetes hindered me in that. Starting at about age 16 I started hiding the diabetes more and more, at times even ignoring it.
It was a stupid move on my part, as it brought me to the ICU on the night of my high school graduation with a life-threatening DKA (diabetic ketoacidosis), but luckily I survived, thanks to the excellent health care staff around me. This complete roller coaster of taking care of myself vs not doing it continued a few years after that too, purely because I didn’t achieve the results I was promised and that I was working towards.
GB: Was it tough on your sibling, with you being the center of attention? HB: Oh yes, most definitely. What she actually feels about it, you’ll have to ask her, but I think she has found it very tough.
GB: What was hardest for you and your family — emotionally? Or financially? HB: A little bit of both, I think, but mainly emotionally. I’ve always been fortunate enough to have excellent health insurance.
I know my mother was terribly afraid of needles until my diagnosis, and then got over it because, well, she had to. And to get over something you’re afraid of is incredibly difficult. So it has affected my whole family in many, many ways.
Also having to deal with the doctors visits, the low blood sugars, the high ones, the inexplicable ones, the food, the insulin, exercise, hormones as well as other factors that influence the care of diabetes is life changing. And definitely not just for the patient, but also for the ones around them.
GB: What treatment do you use to treat your diabetes? HB: Medically, I use insulin and check my blood sugars often.
GB: How often do you have to test your glucose levels? HB: It’s gotten a little easier with my newest acquirement of a CGM (continuous glucose monitor), but I still measure up to 10 times a day. Before that it was 7-12 times a day, depending on how I felt and what I was doing.
GB: Do you use an insulin pump or injections/pens? How often do you need to inject? HB: Since about a year, I use an insulin pump. Her name is Doris, and we’re a great team. But for the other 28 years I’ve used syringes first, and then insulin pens. So I know all about feeling like a human pin cushion!
The benefit with an insulin pump is that it injects small amounts of insulin every 5 minutes, giving the body a smoother supply of insulin, rather than injecting huge lump-dosages and hoping for the best.
The reason I changed was a lifestyle improvement, but also to cut down the margin of error of the big dosages I mentioned.
GB: What kind of insulin do you take? HB: I use NovoRapid in my insulin pump.
GB: What insulins have you had throughout your diabetic career? HB: Oh, I don’t think I can even remember them all! But a selection of them is: Humalog, Lantus, Levimir, Protaphan, Humulin, Actrapid…
GB: How well do you think you manage your diabetes? HB: I think I’m doing better now than ever before!
I take much less insulin and other medications now, my blood sugar is more stable and all my laboratory results and measurements are better than they ever have been.
GB: Can you recognize the symptoms of a low/high blood sugar? HB: Yes, most of the times I can.
GB: What symptoms do you get? HB: When I have a high blood sugar, I get sleepy, my brain feels like toffee, I’m lethargic and I can’t concentrate. Sometimes I’m insatiably thirsty as well.
When it’s low, I feel jittery, I might shake, I can’t see properly, and I can’t concentrate then either. But although that’s exactly what I need to do, I rarely feel hungry, that comes afterwards.
GB: How often? HB: It depends on what I’ve been doing. Stress, too little exercise and water, and too many carbs make it go up. And too much exercise and insulin makes it go down. It’s a careful balancing act.
GB: How do you treat a hypo? HB: I’ve learned to become more patient. Before I used to eat whatever I found, and too much of it, making my low blood glucose race up to be too high.
Now, I reduce my basal rate on my pump to -80% for ½-1 h and eat 4-8 carbohydrates in form of glucose tablets, depending on how low it is. Usually I’m back to my awesome self within 10-15 minutes.
The worst thing for me is waking up with a low blood sugar in the middle of the night and then falling asleep again, once I’m ok. Getting up the following morning is a real struggle. It’s (much) worse than waking up with a hangover!
GB: What do you eat for breakfast/lunch/dinner? When? HB: I actually eat very simple food. Clean, whole foods that have been minimally tampered with is my preferred choice.
I always eat proteins, good, healthy fats and vegetables. And I don’t eat grains anymore, as it impacts my blood sugars too much to handle. It’s not worth it.
I very rarely eat breakfast nowadays, but rather do a form of intermittent fasting, which has tons of benefits. But mainly because I’m not hungry then, and also because that gives me another couple of hours of stable blood sugars. For lunch, around 12am-1pm, I very often have a mixed salad with fish, meat or eggs and avocado and olive oil. Or a vegetable soup, or an omelet. And for dinner, usually around 7pm, it’s usually some kind of cooked/warm vegetables and meat or fish and some great fats.
If you want to see what I eat, you should follow me on Instagram where I have my “food diary”.
GB: Do you vary your insulin dose if you eat something that is not really good for you? HB: Of course, that’s what I have to do to feel well. But I try not to eat things that I know aren’t good for me very rarely. And if I notice it wasn’t good for me, blood sugar-wise, I give a correction dosage as soon as I notice it.
GB: Do you eat snacks in between meals? Soda? HB: Very, very rarely. I’m not hungry between meals, which is something I make sure of by eating what my body needs at meal times. And soda makes me feel terrible, even the diet ones, so that’s not usually on the menu either.
GB: Do you eat vegetables? Drink lots of water? HB: I eat TONS of vegetables every day! They are nutritious and taste great. I have no problem substituting things like pasta or rice, which are frankly quite tasteless, for yummy vegetables.
I make sure to drink 2-3 liters of water a day. I notice on my blood glucose straight away if I haven’t had enough water.
GB: Do you ever skip meals? HB: Mmmm, no not really. Apart from breakfast, like I mentioned before.
GB: Do you find the diet restrictive? HB: Absolutely not. Actually, I vary my eating a lot more now than I used to before. And judging by the fact that I feel so much better eating like this, I only see benefits to it.
Completely besides the point is that I’m a nutrition coach that hates the word “diet”…. Ugh!
GB: Do you get annoyed when people ask if you should be eating a certain food? HB: Not nearly as annoyed as I get by the word “diet”!
I actually don’t get that question too often, especially now that people have realized that I know best myself what I can and can’t eat. But I see it as people trying to look out for me rather than let it annoy me.
GB: Do you exercise? HB: Yes. It’s essential to my well-being, so I exercise pretty much every day.
GB: What do you do? HB: For many reasons, I’ve found that the form of exercise that suits me the best are walks of varying length, intensity and geography. Sometimes I wish there would be more variation in my routine, but I do enjoy my daily walks a lot.
GB: Do you do anything else to manage diabetes better? HB: Yes! Diabetes management goes WAY beyond just eating, medication and exercise.
I have found that having a daily routine helps me manage diabetes, as well as various forms of stress reduction, like meditation, breathing techniques, massages and self-love, keeping up motivation, the right supplements, along with exercise, eating the right things, drinking enough and taking the right medication.
GB: What is the hardest part of being diabetic? HB: The constant worry. And keeping up with the roller coaster, both physical and emotional.
GB: And the best part? HB: How it’s shaped me as a person. It’s taught me self-discipline, celebrating the small things and victories, made me stronger, more resilient and to find happiness in every day.
GB: Does your diabetes cause you any other problems? HB: I try not to see the limitations of diabetes, and at least not let them limit me. But of course there are moments I have to sit down and take it easy rather than going at full speed…
GB: What would you like a non-diabetic to know about having diabetes? HB: There’s much more to diabetes than eating and taking insulin. And blaming people for having diabetes is not exactly right either, it only creates a social stigma. That stamp is difficult to get rid of.
GB: What would you tell someone who has just been diagnosed with diabetes? HB: I would tell them three things: 1) Take a deep breath, I know it’s overwhelming. 2) Your doctor doesn’t have all the answers, you’re your own best doctor. 3) Keep at it, it takes time, but when you find what works for YOU it’ll all be alright.
GB: Who do you get support from? Who treats you? HB: Oh I have a whole team of teams!
My first priority is Team Hanna, which consists of my body and I. Secondary is my husband, then family and friends. Thirdly, I have assembled a real Dream Team of medical staff consisting of an endocrinologist, diabetic nurse, diabetic educator, ophthalmologist, podiatrist, and dermatologist.
Is there anything else you’d like to know about me or diabetes? Ask them in the comments and I’ll answer them too!
Today it’s time for a little look back in the mirror.
To a huge step, at least for me.
Because, exactly one year ago today, I got my first insulin pump.
I had been considering it for YEARS, and various endocrinologists had been trying to throw one at me for about as long.
It was never really a though choice of which insulin pump to get for me, although there are many other excellent brands out there on the market.
My diabetes nurse and I both quickly agreed on the Omnipod being the best fit. Why? I simply don’t like the tubing of other pumps. Tubing makes me feel more sick than I actually am, more attached, and diabetes becomes more visible. Something I’m generally really OK with, but sometimes it’s nice not to be the center of attention.
I was also able to continue with the insulin I was already using (Novorapid/Novolog), so we knew that wasn’t going to be an issue.
And I could finally say the long-awaited good bye to Lantus. I didn’t realize it at the time, but that insulin was not good for me. For example, I had a lump (muscle knot) in my shoulder that my poor husband tried for months to get out through spending every night massaging my shoulders. To no avail. Not until I could stop taking Lantus, I noticed three days later that the lump was gone. This isn’t scientifically proven, of course, but it is my empirical observation.
So, exactly one year ago, I was scared.
Scared of the unknown. Scared of having something attached to me all the time, scared of feeling trapped. Scared of people’s comments, because injections aren’t visible on the outside. Scared of that the insertion would hurt. Scared of effing everything up. Scared of “failing” and having to go back on injections. I was basically just being a general scaredy cat.
Oh, how wrong I was going to be proven!
My life truly changed that day, exactly one year ago. And it did so for the better.
This is my pros and cons list for the Omnipod insulin pump:
I’ll say this again and again, but I’m so happy there’s no tubing involved!
For me, being on a pump means more freedom. Not in terms of eating-whatever-and-just-inject, but more like being able to correct a high while out on the run. Or being able to temporarily change the basal rate, avoiding an impending hyper/hypo.
Stick on and forget
Fill it, inject it, and forget it. For 3 whole days.
Easy to fill
Filling the pods could not be easier. It primes itself, and you don’t have to do anything.
Easy to apply
At first, I was so scared of the auto-injector (naturally I had consumed ridiculous amounts of youtube videos on how the insertion etc worked). But now it’s almost my favorite part of it.
It’s waterproof, so there’s no need (or chance) to disconnect it for showers or going swimming. It also doesn’t matter if you’re caught in a huge downpour.
Lasts exactly 3 days (+8 h)
Until it shuts off, which means no infections and you’re sure to change your site on time.
Incorporated blood sugar meter
Less junk to carry around with me – yay!
Some batches of pods are just bad with many failures, and increased pod changes. But Insulet are amazing at replacing these, it’s just to report and wait for a new pod in the mail.
If you haven’t used all the insulin you filled the pod with within the 3 day period, you lose much of it. Even if you try to withdraw it from the old pod.
A badly placed pump = uncomfortable sleep and irritation for 3 days.
Because you remove the entire pod when it’s time to change, it creates a lot of waste. Although Insulet does have a recycling program where you send back the old pods to get recycled. Great initiative!
The plaster might not hold for the entire 3 days, especially when it’s warmer outside. Medical tape can, and should be, one of your BFF’s. (not just for pods, but things like cuts, CGMs and blisters, too.)
Granted, I don’t have any insulin pumps to compare the Omnipod to. But generally I’m so happy with my choice of insulin pump, and wouldn’t want it any other way. And I definitely do not want to go back to injections.
As you may or may not know, I’ve (of course) given my pump a name. She’s called Doris.
Doris, my Omnipod
On her first birthday, I’d like to take the opportunity to THANK Doris for being my closest friend, always being there for me, knowing everything about me, for helping me calculate dosages, see trends and help me be a healthier diabetic.
Without you, Doris, I would never be able to get 24 hour graphs like this one:
The past 24 hours on my CGM – thank you insulin pump!
You’re a true star, Doris, and I’m not sure I could live without you!
Happy, happy birthday, sorry I couldn’t give you the day off.
Do you have an insulin pump? If so, which one? If not, why not?
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