Tag Archive for: insulin pump

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My Pump Break 2020

Have you ever taken a pump break?

I recently had a six week break from my insulin pump, and I’m not going to lie, going back to MDI (multiple daily injections) wasn’t as easy as I thought!

In this episode of #type1thursday, I share my reasons why, pros and cons of MDI, getting back in the pump, as well as my note-to-self for next time (hint: all of it exciting, none of it smooth…)

My #pumpbreak 2020 – Hanna Boëthius

Share your experiences with me, about pump breaks, MDI vs pump or what you’re most comfortable with?

DISCLAIMER 1: I wasn’t sponsored by any one or any company for this, and paid for all of it myself (with the help of my health insurance, obvi)
DISCLAIMER 2: This is just my own, personal experience. I can’t speak for anyone else, or their experiences.
DISCLAIMER 3: The only purpose of this video and website is to educate and to inform. It is no substitute for professional care by a doctor or other qualified medical professional. This video and website are provided on the understanding that it does not constitute medical or other professional advice or services. Instead, we encourage you to discuss your options with a health care provider who specializes in treating Type 1 Diabetes.

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Type 1 Thursday – Medication

Are you taking the right medication, or medications, to manage your diabetes?

We often just “take what we’re prescribed” in terms of medications. But is this always the best strategy? Is there anything you can do as a patient to influence your medication?

In this week’s Type 1 Thursday, this is exactly what I’m talking about, how we as patients can get more of an insight and clue into what we’re actually given, and should be taking.

Type 1 Thursday – Medication – Hanna Boëthius

Are you taking the medication you need to manage your diabetes as well as you can? Is there anything you should perhaps check with your health care professional? Let us know in a comment below!

Transcription

If you prefer to read this information, please find a text version below:

I can’t wait to discuss today’s very important, but this may be my shortest Thursday ever. The topic today is medication and although this is a super important thing when managing your diabetes, I am unfortunately not a medical professional. Ergo I am not allowed to give you any advice on this. (This is why this might be my shortest type on Thursday, ever.) But what I will give you are some general tips and tricks of what you can do and what you should look out for and when it comes to medication and your diabetes management, whether this is Type 1 or Type 2, it doesn’t really matter. Most of us need to, unfortunately, be on medication anyway, Type 1’s, of course, forever and ever until the day we die, we need to be on insulin, at least, if not other medications. Type 2’s can get away with not being medicated, in some cases. But in case you are, then this could be something for you as well.

The first thing to really make sure that you have is a great cooperation with your healthcare professional, because they, in comparison to me, can give you advice on medication, and medical issues in your management. I can only give you results, tell you things that I’ve done and that has worked for myself and that I know from other people’s experience, nothing else (glad we got that covered!) With your healthcare professional, you need to find out whether or not your medications are actually what you need. In many cases that I know of, are actually not given the correct medication, which they find out in hindsight. This is where you really have to speak up as a patient and tell your health care provider, whether that’s an endocrinologist, or CDE, or nurse or nurse practitioner – whatever you prefer to go to. You have to have an open conversation with them in terms of how you feel, how it’s affecting you, how it’s affecting your lifestyle, your energy and what your blood glucose values are, if you live with diabetes. This can both relate to the amount of a medicine that you’re already taking, or a type of medication that you’re taking. Do have someone that you can really trust on your team so that you can get the help that you need in terms of medication.

This medication, as I touched upon a little bit before, needs to fit into your lifestyle, as well. If it doesn’t fit you to feel sluggish, not energetic slow and just generally crappy, then definitely speak up, do something about it! There’s always, always, always something that you can do to feel better, as I usually say. And there’s most often another medication that you can try instead. Make sure that you get what is right for you for your lifestyle, for your body type, for everything that can have a an influence.

Let’s go more into insulin. Have you been given the correct types of insulin, for example? There are many types of insulin, of different efficacies, and how long they last in the body. How long insulin works in your body is very individual. For me, for example, my short acting insulin, that I’m on all the time through my insulin pump, last quite short in my body, it’s only two hours. That being said, the same insulin can last a lot longer in someone else’s body, even up to four or five hours. That’s something that you have to find out. Do you have the right type of long acting insulin, for example, for your life, for your diabetes, for the way that you want to feel? There are many different types of long acting insulin, and they have different aspects and attributions to them. Check out if you may be need to change yours or try another one for a while. In most cases you can try if you want and then go back to your normal routine if it doesn’t work out for you. I think, as patients, it’s very important that we have that choice. There are also different types of short acting insulins, rapid acting ones, which you need to find out which one works the best for you. We also have, for example, regular insulin, which covers, for example, protein very well. It can be a great tool to use if you are willing to try it. It doesn’t act like the other insulins, so don’t expect it. But it can be very helpful in certain cases, especially with a more protein rich way of eating.

When was the last time you did some basal testing? When was the last time you did a proper basal test to check your basal insulin? Whether that comes from a pump, or long acting insulin is accurately dosed for you, your life, and your diabetes. For example, someone maybe more insulin sensitive at times of the day or more insulin resistant at other points of the day. We have to make sure that the basal insulin is the correct amount for you. This is best done with through fasting and you check your blood sugar every hour throughout a 24 hour time period, this can be split up in different days, as well. Anyway, I’ll get to that in a different chapter in a couple of weeks time. Basal testing is very important to figure out if you’re doing the right thing with the insulin.

Another thing is to pre bolus. Do you need to pre bolus for your meals? Maybe check it out, if you feel comfortable with it, you can try around a little bit with pre bolusing before meals, and see if you get better blood sugar results through that.

Other, not directly diabetes related medications, that you may or may not be prescribed. Again, you have to work with your healthcare provider and see what can be maybe improved, maybe added, maybe taken away. Being diabetic, one of the milder complications can be high blood pressure. Maybe you are on blood pressure medication already, maybe you need to be on one? Maybe you need to be an ACE inhibitor, which has been shown to sometimes protect the kidneys from damage, for example. And it’s a statin really necessary in your specific case? Discuss with your doctor, and bring papers, bring your research along and they usually try to accommodate, or, rather, should try to accommodate you. But it doesn’t mean that everyone does, of course. A medication like Metformin, for example, maybe it could be beneficial for you? Maybe you don’t need it anymore?

Again, you have to have an open dialogue with your healthcare provider. That’s my main point when it comes to medications. I can give you ideas of things to think of and bring forward to your doctor, but I cannot give you advice on exactly how to do it.

Are you taking the medication you need to manage your diabetes as well as you can? Is there anything you should perhaps check with your health care professional? Let us know in a comment below!

Ps. Do you want to learn from amazing medical professionals at Europe’s healthiest event? Join us in Mallorca, Spain in November at The Low Carb Universe 2019!

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Type 1 Thursday – Injections vs Insulin Pump?

Today’s topic is MDI (multiple daily injections) vs insulin pump – which is better?

This comes after a question I got on an Instagram post, where I was asked if it’s necessary to use a pump as a Type 1 Diabetic?

My short answer is DEFINITELY NO! If you achieve great results and reach your goals, it doesn’t matter what kind of insulin delivery system you use. The main point is that you have normal, healthy, happy blood sugars.

Watch the video (or read the transcription below, if that’s more your thing) to find out my pros and cons of MDI and insulin pumps.

I want this to be a conversation starter, so why don’t you let me know YOUR pros and cons in a comment below? And, what do you use to deliver insulin? Let me know!

Transcription

The age old question for most people living with insulin dependent diabetes, is the question I recently got on my Instagram post.

The question was about whether it is necessary to use an insulin pump, or if multiple daily injections, either though a pen or syringe is better for diabetic?

This is very difficult to answer straight off the bat, because this is a highly individual topic. In my opinion, the short answer is that it doesn’t really matter what you use to deliver the insulin, that you do need as a Type 1 Diabetic, as long as you do. If your diabetes is well managed with maybe a completely crazy version of either MDI or insulin pump or whatever, then hey, that’s fantastic. You found what works for you, and that is great.

Today, I wanted to have a conversation starter with you, which we can happily continue in the comments below. I wanted to outline my pros and cons for both MDI, which is multiple daily injections, you deliver your insulin by injecting yourself every so often with both basal and bolus insolence. And also pros and cons for the insulin pump that I’ve noticed for the past couple of years. Maybe this can help you make up your mind, maybe there you find out something that you want to try, and if you do, please let me know in a comment.

My own story in regards to my insulin delivery method has been a little bit jumpy. Well, I was actually flat out refusing to have an insulin pump for so many years. I had had diabetes for 27 years before I finally agreed with my diabetes nurse that now I was ready to try. And this despite health care professionals suggesting an insulin pump to me, for the majority of my upbringing, (well, maybe not in the 80s. They weren’t super common back then.) since they have become more common, they have been suggest to me every once in a while, and I’ve always refused. Because, and this was the biggest con for me the insulin pump back then, was that there’s something always attached to me. I was afraid that I would feel sicker than I have to be. And I was afraid that I’d be constantly reminded of that I am maybe not as chronically healthy as I would like myself to be or as other people may be. (I am, however, chronically awesome!)

So I was very, very hesitant and very afraid of getting myself my first insulin pump. I opted for a tubeless patch pump, which then changed into a tubed pump, about one and a half years ago, I took the step towards a tubed pump for a variety of reasons, which we can happily discuss, and maybe a little bit later. I’ve done multiple daily injections for a lot longer than I have lived with an insulin pump constantly attached to my body.

I wanted to outline few pros and cons of them each.

So let’s start with MDI, as that’s where I actually have most of my personal experience. I want to start with the pros. This is a biggie for me, and for very many other people who live with diabetes, the freedom factor you have with multiple daily injections. You don’t have anything attached to your body, unless you’re wearing a CGM, but they are a lot smaller and maybe you don’t want two things connected to your body at all times.

Hand with this goes also that it makes the illness more invisible. Because you don’t have a pager looking thing stuck to your hip or your clothes somewhere. It becomes a very much more visible illness to live with, with an insulin pump.

If you do multiple daily injections, you can also take a lot more different types of insulin, because different insulins act in differently during different times. For example, as Dr. Bernstein always recommends, is that you take regular insulin, or R insulin, to cover protein, and the protein spike that comes a few hours after you eat a lot of protein. This is easier to do if you are on MDI then having to remember to also have another shot when you’re on an insulin pump. You can also then take fast acting insulin, to which you have to correct high blood sugar or for covering for carbs. Finally, you can choose which long acting insulin that you combine this with in a way more flexible way. When it comes to types of insulin that you take, you can find a routine and a regime that works for you. And for your diabetes, to manage it properly.

MDI can also be seen as being a bit simpler, you take an injection and you’re done. Instead of having to care about every time you remove a piece of clothing or something that the tubing gets stuck or you snag the the infusion set… If you get the benefits and reach your goals with MDI, then why not stay with that?

I think it can also be argued that MDI is cheaper than being on the pump. With the pump comes very many things that you have to pay for, such as rent of the pump, for example. I have to pay rent every month for having my pump. All the supplies for it also cost a lot. It’s not just the insulin that costs! With MDI, either you use syringes that are reasonably cheap, or you have insulin pens that most people with diabetes actually get for free.

Also, from a very, from very superficial point of view, because sometimes you need to be that, too. On MDI, you can wear anything, and you won’t see any devices poking or sticking out, or being in the way, or there’s a seam or there’s something that is just obstructing either the pump or the tubing. With MDI, you are freer in that way too.

I would conclude that with the main point of the pros of MDI is freedom.

The cons of MDI! I find it in hindsight, it is quite inconvenient to be on MDI for myself. I can only speak for myself here! But every time I had to correct, every time it’s time for the the basal shot, I had to pull up my shirt, or pull down my pants… For me, it became quite inconvenient, because I had to inject myself about 10 times a day, before I swapped to the pump. That was a big sales argument for me, to be honest, not having to pierce myself with a needle 10 times a day, only do it once every three days, that sounded like heaven! That’s why I went for it, actually. You also have to remember to take your basal insulin at the right time. It became a huge effort for me to try to remember when and how and how much, which dose at this time of day…

What else I see as a con for MDI, in my opinion, is that you have a lot more to carry along with you when you leave the house. An insulin pump is always on you. So that’s it for the insulin thing. Then you need a blood sugar meter, maybe some glucose tabs and that’s fine. That’s a lot easier to carry then two types of pens and the pen needles and blah, blah, blah, for me it becomes a lot more carrying along. That being said, for most people is not a problem.

Another, slightly inconvenient part of MDI, is that you have to expose body parts. Usually this is not a problem at all, whether you’re female, male, whatever. But – imagine what is it really, really cold, and you have to like take up your shirt, and you feel that icy wind against your skin. Then you also have to inject yourself. I don’t miss that at all. I really do enjoy the fact that for example, if I am out and about around town or something, I can just take up my insulin pump, I can look like I’m texting (or whatever ignorant people choose to believe). That’s how easily I’ve saved my life with more insulin if that’s what I need, or turned down the basal if that’s what I need. But it becomes a little bit inconvenient for me to expose body parts here and there, especially when I’m out and about.

The importance of rotating sites becomes very, very big on MDI, because we all have those favorite spots that we like to inject ourselves in. And that’s fine. But you do have to rotate your sites! I noticed for myself, that it is a lot easier for me to rotate pump sites than it was to rotate injection sites. It even got so bad that no one could touch my upper thighs for a while because I had just injected so much long acting insulin into them.

For the MDI cons, in conclusion, inconvenient to me.

Let’s move over to the pros of the insulin pump. So the absolute highlight for being on an insulin pump for me is that it is very, very flexible. I can be very flexible with my basal rate, for example. If I notice that I’m trending upwards, I can change it, I can add on a bit of temporary basal to see if that’s the problem. And also with the bolus, you have the different bolus profiles. Instead of, as I was talking about in MDI, you can use different insulins for this, you use the same insulin the whole time, just in different profiles, so to speak. For me, it’s a lot easier to just remember that I have one tool to work with and I can do different things with this same one thing.

My second favorite pump benefit, it is micro-bolusing. I can take bolus’ in the size of 0.1 unit, for example. If I really want to, I can do a 0.05 bolus on some pumps, making it much more precise. This is not possible on MDI, because there you have the minimum is half a unit. So it depends a little bit on how tight you want to steer your diabetes ship. I really like the fact that I can really micro manage my blood sugars, to a certain extent, not overly so of course, because that becomes ridiculous on all other levels. But it is very nice that I can do a micro bolus every now and then. When I see the CGM trending up, I’m like, oh, let’s try with 0.X units and see if it comes a little bit down. If not, then I have to redo and recalculate. But it is a good check for me to see what’s wrong.

As I mentioned before, it is very easy to handle when you are on the go. You can even take care of your health and blood sugar during a business meeting (I have done that many times before), and when you’re out with friends, if you are in a busy street. Or imagine, for example, it’s rush hour at the farmers market and you feel or you get a notification for your CGM that your blood sugar is a little bit high, you would like to correct but you can’t really find a quiet corner. With an insulin pump, it’s a lot easier because you just click a few buttons and you’re done. You’ve taken care of the situation and you can move on with your day.

To a certain extent, I also find that it’s more efficient for me to treat and manage my diabetes with an insulin pump. I don’t use nearly half of the insulin as I do before. I also don’t spend as much time managing my diabetes as I did with MDI. Also, of course, if you are a data nerd, you have a lot of data to take care of and see and have insights and analyze and see trends. And the ever so important tech integration, more and more pumps now do integrate with a CGM, so that you can get both things at in the same device. And also, the looping possibilities that are coming up now that are very, very exciting to everyone who lives with diabetes.

The cons of insulin pumps (yes, yes, they are. There are cons with these ones too, it’s not all just roses and happy flower dances.)

I already mentioned one of them, which is that this is something that you always have attached to your body. And that can be very draining, both emotionally and physically and mentally, for some. It’s not always easy to always be connected in that way.

The tubing does, if you have a tubed pump, get caught on stuff like door handles, and other things, clothing, everything. It’s not really the most maybe smooth thing in the world to live with, you do have to watch out and make sure that your tubing is inside of your clothing, preferably, so that you don’t snag it somewhere.

I find that using an insulin pump produces a lot more trash than MDI. I’m not really happy about that, but as it is a lot easier for me to manage my diabetes with the help of an insulin pump, I keep with it, and I hope that the insulin pump provider companies will at some point really reconsider their recycling policies, so that you can maybe even send that stuff back so that they can take care of it. And not to mention Dexcom, please get your act together! But that’s another video. 😉

One problem with insulin pumps is that if it for some reason, malfunctions, and that can be the site malfunctions, the battery runs out, or the insulin goes bad or the machine get some sort of hiccup. If it somehow malfunctions, you don’t get any insulin at all and that can become dangerous quite quickly. That is one of the bigger cons for an insulin pump.

For me, airport security, or generally when you travel, insulin pumps can sometimes get a little bit interesting. They will want to swipe them for explosives. For certain airports, I do have to take more time into consideration when I travel through there because they just don’t know really what it is yet. It is unfortunately becoming more and more common, meaning it is less of a problem. But sometimes I could happily maybe be on MDI for a trip!

What do you have to add in terms of pros and cons for MDI and pros and cons for insulin pump? What do you use it to deliver insulin?

Please let me know in a comment below. I will be happy to chat with you there.

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Travelling with Diabetes

Travelling with diabetes requires quite some extra effort.

And planning. And “in case of” and “in case shit happens” preparation.

Especially if you’re planning to travel far, across the oceans and time zones.

Travelling with diabetes isn’t impossible by any means. I’d say it’s actually the opposite. You just have to know and prepare properly for it.

As I’m leaving on a longer-than-usual trip soon, and as it is my first trip that far with the pump (I really don’t travel enough, clearly!), I went to see my lovely diabetes nurse for some tips and tricks and general good advice.

(Where am I going, you’re wondering?! You’ll find out soon, if you follow me here!)

It turns out A LOT has happened in terms of handling diabetes on the long-go, at least if you’re wearing a pump.

Last time I crossed continents, I was still on Lantus and had very little idea of how to handle it all, with the time zones, different rhythms and change in exercise level. Let’s just say I didn’t handle it optimally well. Partially because I didn’t know how to, partially because I frankly didn’t  care about it then as much as I do today.

As a result, my blood sugar levels were all over the place, I was exhausted, not only because of the time zone change, but also because of the rapid blood sugar changes. Add on to that arriving in a bustling city where I had never been before (NYC that time)  and wanting to explore it ALL in the few days we had there…

Let’s just say that that equation didn’t really add up to work in my favor.

Which is why, this time around, I’m taking much more thorough precautions before setting off.

Hence, I scheduled an appointment with my diabetes nurse.

First of all, I wish everyone had the opportunity to work with a diabetes nurse as awesome as mine is. She has a safely secured spot in my Dream Health Care Team, that’s for sure.

Secondly, she had a really nifty trick up her sleeve for me to use while in transit.

She suggested that I’d set up another basal program on my insulin pump, with a constant basal rate for the first (few) days. Basically as long as it takes me to get over the biggest jetlag factor.

I have pretty low basal rates throughout a 24 hour time period, between 0.4-0.55 units per hour, giving me a total of 11,3 units per 24 hours. Her suggestion was to set up a basal profile with a constant 0.45 units per hour for the first 24 hours, to give my body a chance to acclimatise quicker, and then turn on my normal basal profile (and change the time on my pump) when I either realize weird spikes in blood sugar, or I feel like I’ve caught the worst of the jet lag wave. (Lowering my basal while travelling seems to generally be a fantastic idea…)

This was completely new to me. And, granted, I haven’t tried it out yet, so I can’t tell you how well it works (or not). But it seems a lot easier than the old ways of changing basal injection times and dosages along as your jet lag diminishes…

Perhaps is travelling with diabetes  just that much easier with an insulin pump?  

This wasn’t of course the only advice she had for me. Along with the “usual” tips of bringing (much) more supplies than you need, a doctors note for security checks, an extra blood sugar meter & test strips for it, staying hydrated, getting sleep during night time, paying close attention to blood sugar, bring a glucagon kit and snacks, snacks, snacks, she also showed me the “device” (aka chart on a piece of paper) that she uses to calculate a possible return to Lantus dose.

This is excellent information to have if I ever want to go on a pump-cation (a break from my insulin pump), or, if by any chance against all odds, my whole pump system breaks and I need to take Lantus until a replacement arrives. Because I take on average a total of 18 units of insulin per day, the chart showed that my Lantus dose should be around 20 units per 24 hours. I have no idea about the conversion calculation that is used here, so if you do, please leave a comment below!

I feel really relieved and happy that I’m doing all this preparation work for my trip. Now it’s just to keep fingers crossed that the actual trip itself goes as smoothly as the preparations have done so far.

How do you travel with diabetes? What tricks and tips do you use? Please share them in the comment below!

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The Low Blood Sugar Make up

Diabetes gets in the way of life sometimes.

And the other way around, too. But that’s the topic of another story.

Being such a big part of our lives, it would be weird if it didn’t mix in and mash up your plans sometimes.

Sometimes we’re talking about interrupted sleep, another time it’s an unplanned meal on the menu. And sometimes it’s about being so tired, simple chores can be compared to climbing Mount Everest. At least. Not to mention the guesstimation game we play with the pancreas on our hip, in a pen or syringe. Up? Down? A little up and then down? The other way around? Or even *gasp* stable and level? (Watching your blood sugar do a salsa dance on a cgm is sometimes entertaining, as long as you don’t put too much personal attachment to the numbers)

You can almost never tell with 100% accuracy where your blood sugar will end up after a meal, some insulin or just by plain old living.

And sometimes you can’t let the stubbornness of diabetes get in the way, either.

Like the other morning, when I had to get to an appointment I had.

I woke up at 4.4 mmol/l (79 mg/dl), which I was happy about. My cgm curve looked smooth from the night and I was even more happy about that.

I jumped in the shower, washed my hair, moisturized and brushed my teeth. I was feeling a little sleep-groggy, but nothing else.

I went to put on my clothes, got dressed and noticed an odd, fuzzy thought popping up in my head that usually stems from the low-blood-sugar-drawer in my brain.

Nevermind that right now, I had other things to do, like taking my morning medicine (thankfully not insulin) and supplements.

When I got back downstairs from the kitchen, my next task was to do my make up. But I decided to check my cgm first, which showed 4.1 mmol/l (73 mg/dl).

Ok, I thought, that’s not bad, although I’m dropping. More of the odd, fuzzy thoughts popped up, and I decided to check my blood sugar on my blood sugar meter, if only to ensure myself that I wasn’t low.

3.4 mmol/l (60 mg/dl) “treat your low BG!”, my d-companion Doris (OmniPod) was telling me.

“Ahh, eff-word”, I said out loud. “I don’t have time for this!”

I usually don’t treat lows until below 3.5 mmol/l, as I find they usually recover fine from there with just the help of lowering the basal on my pump. But as I was leaving, and it was 0.1 mmol/l lower than my usual threshold, I decided to pop a glucose tablet and shut of the basal on my pump for 30 mins.

Knowing I’d be completely OK within 15 minutes, but had to leave the house in 20, I had little choice but to continue with my morning routine and my make up, which is a fairly effortless task.

If you’ve never experienced a low blood sugar before, let me tell you that it can be quite “interesting”. It feels a bit like being tipsy, without having had anything fun to drink. Or like being in a very fast, accelerating car while standing on the ground. It can be dizzy, vertigo, confused and temporary vision problems all in a big merry go round that doesn’t want to stop right now. (It can also feel a gazillion times worse than that, but thankfully that wasn’t the case this time.)

Having to think twice if you’re *actually* using foundation and not the bright pink blusher heavily all over your face is a challenge I’m usually blessed from. I usually know where things go in terms of make up…

Or double-checking that the eyebrow pencil is still brown and you didn’t accidentally reach for the turquoise eyeliner to fill in your eyebrows instead. Or concentrating so hard on getting mascara ON my eyelashes and not only underneath my eye. Not to mention actually getting that blusher semi-equally distributed. Or checking that the foundation isn’t blotchy anywhere.

This can, but probably shouldn’t, be compared to doing your makeup after a good after work drinking session with your colleagues. In short, no bueno.

Throughout this particular mornings routine work, I kept thinking if I actually managed that well with everything, or if, once I was back on track again, would find myself looking like some Cubist rendition of myself. Or like a clown. Or like Gene Simmons from Kiss.

All I could imagine seeing once the low blood sugar fog had lifted was some weird version of myself, as it would have been painted by Pablo Picasso himself. Or something equally scary.

This time I was lucky, though.

When my blood sugar was back in normal range again, I saw that I looked more or less like myself, if only ever so slightly more tired.

What do you do when your blood sugar drops low, do you keep going or stop and wait? What does your decision depend on?

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HbA1c, just a number?

Do you ever find yourself paying a little too much attention to a specific number?

Your weight? Your distance covered? Milestones reached? Friends on Facebook?

Or, perhaps, your HbA1c, the “lighthouse” of how you’re doing as a diabetic?

It’s easy to put a lot of weight on a number (pun intended!), because it’s something measurable, something you can follow and have a direct understanding of whether it improves or gets worse.

What’s difficult to understand is that these numbers, none of the ones I mentioned above, matter much.

Your weight technically doesn’t matter much, as long as you feel fit and healthy with it. Neither does the amount of kilometers you ran last week, unless you were in a race… Counting milestones only creates an inner stress and pressure to reach your goals faster, harder, more productively. And, friends on Facebook – are they r e a l l y friends…?

I know. This is crazy cakes.

We’ve been told, time and time again, to set measurable goals, and it’s really hard to find ways to measure improvement without those numbers.

So also when it comes to diabetes care and the HbA1c value.

I’ve been conditioned for 30 years to regard my HbA1c as the shining light of how well I’m doing, so the habit isn’t easy to break. Even when I know I’ve done pretty darn well lately.

I had my a-few-times-a-year appointment with my endocrinologist earlier this week.

Driving there (only takes about 7 minutes, but still), I was super-nervous and kept sending little wishes out for a lower-than-last-time HbA1c reading (which was 6,4%).

I got there, peed in a cup, had some blood taken, weighed in and measured my blood pressure. For someone who has a severe case of “White Coat Syndrome”, which is when you get nervous just seeing, being near or even thinking of a doctors office, the last part always seems a little stupid. And it was this time too, because it was through the roof.

I got into my endo’s office and we chatted a bit about life in general, before we got into the whole diabetes thing.

Once again, I was complimented by her on how well I’m doing. This is still a weird feeling to me, after having basically been a disappointment and being scolded for the other 28 years I’ve met with endocrinologists.

She told me that there probably isn’t much more I can optimize about my care without having a lot more hypos. “Watch me” I thought to myself, as I still think I can, and I will keep trying to optimize and improve until the day I die.

Anyway, to the value that every diabetic has been conditioned to regard as a sign of life or death: my HbA1c was 6,2% this time, or 44 mmol/mol.

This is the lowest I can ever remember having during my 30-year career in and with diabetes. I asked my parents, too, and they can’t remember anything lower either.

The fact that I’ve put so much emphasis on it and then receiving exactly the result I was hoping for made me ecstatic. Happy, euphoric and close to tears of pride. In my opinion, with all right. (And I have yet to celebrate this properly!)

After we had discussed some other topics, and I had received all the supplies I needed from their office (making it feel like Christmas every time I go there!), I got into my car and drove off, full of joy!

I got home, told my husband about the result, he gave ma a huge congratulatory hug, and I was so darn pleased with myself. I posted a rarely-seen-selfie  and got on with my day.

Later in the evening it hit me though. I was sad. Despite my excellent HbA1c result. Despite the praise and the congratulations. I felt saddened.

It took me a good few minutes to figure it out, a little EFT tapping and some meditation came in very handy at that point.

I was sad, because that result didn’t mean anything, really.

Fine, it means that I’m reasonably well controlled in my diabetes. It means that I’ve come a long way from where I started a few years ago after a long diabetes burn out, giving me double figure HbA1c’s. And it gives me a little hope for the future.

But it also means that I’m not really awarded in anyway for it (unless I buy myself something pretty, or have a glass of champagne to celebrate). It doesn’t give me a break from diabetes, not even for a minute. It doesn’t stop the poking, prodding and always having to be on alert. It doesn’t mean I can live carefree and forget about everything.

It just means that I’m alright and that my doctor is proud of me. And that I’m technically “pre-diabetic” according to my HbA1c. 

Don’t get me wrong.

I love the fact hat I’ve found my own way and am finally in the position where I feel like I have even the faintest of clues about this whole diabetes thing.

I love the feeling of not being scolded by my dream health care team. And I love that I can say that I’ve reached a new record in my life.

But I don’t think it’s the best idea to put as much of a value as I do on this one value. Especially as there are so many other factors that determine how well I’m doing and/or how healthy I am.

 

What about you – do you also put too much emphasis on one single number? Perhaps it’s your weight? How far you’ve run this week? Or maybe you’re like me and put (too) much focus on your HbA1c?

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When Diabetes is bigger than it needs to be

Diabetes is undoubtedly a very big part of your life. Just as it is of mine.

And you can blame a lot of stuff on it. Sometimes you have to blame more on it than you’re willing to admit.

If you’re anything like me, people have asked you why you don’t blame MORE stuff on it to get out of sticky situations etc… I have to admit sometimes it’s tempting, but I have enough things I have to blame on diabetes, and I don’t really feel the need to make it any worse.

But there are certain moments when diabetes is pointed out as the bad guy, even if it (for once) has nothing, or very little, to do with what’s going on.

When diabetes becomes bigger than it has to be, I sometimes find it difficult to cope. It feels a little like just because I have diabetes, I’m not allowed to have “real people feelings”, but instead everything has to be related to that my pancreas doesn’t work like it should. I’ll show you some examples in a second.

These are all examples that has happened to me, or that I’ve noticed recently.

Doctors blaming everything on diabetes. Yes, they’re doctors, yes, they know all of your health history, and yes, they (sometimes) see the bigger picture.

And whilst things like infections, colds, poor healing time and your thyroid doing a funky dance can very well be diabetes related, it doesn’t mean everything is.

Like an injury you’ve gotten while being (or trying to be) sporty. Unless you had a mega hypo or hyper blood sugar when it happened, it quite probably has nothing to do with diabetes.

Or an allergic reaction. Again, unless it’s gluten (which can be diabetes related), my seafood allergy probably isn’t connected to my diabetes.

Yet, in both of these instances I’ve gotten the answer that it’s “because of your diabetes”. Newsflash!

Being thirsty. While excessive thirst is a good indicator of your blood sugar being high, again, it doesn’t have to be the case. At all.

A “normal” person needs anything from about 1,5 liters of water and upwards per day. And this can vary greatly if you’ve done more exercise than regular, if you’re on certain medications, if you’re stressed, if you’re pregnant or breastfeeding, your altitude, if it’s hot outside, if you’ve had alcohol, if you’re sick with fever or diahorrea… The list goes on! And that’s ignoring any kind of diabetes, high blood sugars, and other fun stuff.

And yet, especially as a child, I was always asked if my blood sugar was high when I was thirsty. (Sorry, mom! I know you were only worried about me.)

There could have been a gazillion other reasons for my thirst. But then it was always had to be due to my blood sugar and that I had somehow misbehaved and eaten something I shouldn’t have.

This lives on in me, and every time I’m super thirsty, I automatically check my blood sugar. Even if it’s first thing in the morning when your body is automatically de-hydrated and needs to fill up on the water reserves.

Being tired. Yup, it’s exhausting to live with diabetes 24 hours of every day, of every year. It is.

But it’s also exhausting to be a human being, with everything that one needs to do, should do, and does anyway.

Every yawn, every early night and not being the last man standing at a fantastic party isn’t automatically connected to me having diabetes.

Maybe I have something to do early tomorrow and need my sleep? Maybe I just love sleep? Maybe I can feel so much better if I only get a proper nights sleep on it? And maybe you do, too?

We all need, under optimal circumstances, about 7-9 hours of sleep per night. To let your body rest, to let it regenerate those broken cells, to think clearly the next morning. And for things like weight loss and hormone regulation, proper sleep is crucial.

Having a bad day. As soon as you’re having a bad day, those loving people next to you automatically assume it’s because something’s up with your diabetes. I know, every single one of you only wants the best for me, and you’re worried about my well-being. And I am grateful for that.

But “normal people” aren’t Mary-Poppins-ray-of-sunshine all the time either.

It may very well be that people with diabetes have these days slightly more often than people who don’t have to worry about things like asking a little computer how you’re doing in that minute, and worry (more or less) about what that number means.

Everyone has days when they just want to give up, when they feel hopeless and feel like they can’t take it anymore. Everyone, including those with diabetes, have those days.

And they are allowed. Those days are needed, too. If only to remind you how well you’re doing on other days.

Manicurist… This is a fantastic story. And it happened to me quite recently.

One day, not too long ago, I decided to treat myself to a manicure.

For once, said manicure wouldn’t be done by myself (gasp!), but by a professional. And I was really looking forward to some me-time, some pampering and switching off my head and just relax.

The manicure itself was lovely, I felt amazing after it and having chosen to do gel lack, I expected it to last at least a week.

When I woke up the following morning, I saw one of the nails had already chipped! Off of my expensive manicure (not even that is cheap in Switzerland).

I was upset and frankly a little shocked. I didn’t think it would start chipping off that soon. I called the nail lady to let her know, and she told me to come back later the same day to fix it.

When I got there, we got to talking. I told her that I have diabetes, and of course her grandmas cousins friend had it too, but died. Great.

Suddenly she says “I know why it chipped off so soon on you!” Being all ears, I asked her to explain.

“It’s because of your diabetes!”

I couldn’t believe my ears.

I asked her if she was serious, and she told me that was definitely the reason.

Almost speechlessly I thanked her for her help and that she was so nice as to fix my problem so quickly.

This might even have been a believable reason, if it wasn’t for that other times I’ve treated myself to gel lack manicures, they’ve held just fine. No chips, no complaints until about a week after. Which is normal. To me, she was just blaming her crappy job on my very-handy-for-excuses illness…

 

Diabetes is always a double-edged sword; on one side you have the negative stuff that is really painful, sore and keeps you in bed some days. On the other, you have things you can, should and need to do. Like having “real people feelings”.

 

When have you experienced people blaming your diabetes for something it wasn’t really part of? Tell me in the comments below!

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Diabetes & The Long Run

When you’re first diagnosed with Diabetes, it’s a major shock to the system.

The questions are endless. What do I eat? What medications do I have to take when? I have to inject myself several times a day?! What the what? I didn’t sign up for this!!

But what happens after living with diabetes for a long time? How does it feel? How does one cope? Why doesn’t one just give up?

Technically, this year marks a series of “jubilees” for me and Diabetes.

It’s been 30 years since my diagnosis this year. 26 of those I spent on a clueless treadmill/roller coaster without a mission and without a cause. The last 4 have been the best ones, so far, starting with me radically changing the way I ate. I’ve spent 28 years with around 10 injections a day, 2 years on the pump. 1 year with my BFF Dexter (my Dexcom CGMS).

Anyway, I want to focus on the first one of these – 30 years with diabetes.

Living with diabetes for 30 years is like living with the most loyal companion (or enemy, depending on the day) you’ve ever encountered. It never leaves your side, and you never get even a second to yourself.

It takes a lot to get used to living with it being a part of you. And, because it’s always evolving, dynamic and on the move, it’s sometimes difficult to keep up with it. Oh, you don’t react well to gluten anymore? Ok, let’s change that. No dairy either? Ok, well, bye bye cheese. Caffeine makes you hyper react? Ok, decaf it is. And that’s just talking about a few food things, completely disregarding certain forms of exercise, timing of medications, or reactions to certain situations.

It’s a silent friend that never talks until it screams. And when it does, it screams loudly. Scary lows, annoying highs, and the possibility of losing a limb or your vision.

The awful feelings and the taste of glucose tablets (or orange juice when your life depends on it, for that matter). Lengthy doctors appointments and the endless needles. Hospitalizations. Advice you should have never followed, other advice you should have followed from day 1. To mention a few.

There are so many things that are so bad with this disease. Horrible, in fact. But there are also things I would have never learned if I hadn’t had this Constant Companion of mine.

It has taught me discipline, timing and humility. It has shown me that life is here to be lived, not to be wasted. Life is fragile, don’t take it for granted. It has taught me about the importance of self-love, no matter what happens. It has helped me see how strong I truly am, “this too shall pass.” I’ve realized that being stubborn isn’t always a bad thing; it can even help you sometimes.

So, what keeps you going throughout the years?

You simply have to. You have no choice but to buckle up and try to enjoy the ride as much as you possibly can. Until that cure comes “in 5 – 10 years”.

Nothing gets better by ignoring diabetes. Trust me, I know.

The mental part of living with diabetes is difficult from time to time. There’s no point trying to sugar coat (ha!) that.

In my teenage years, I didn’t want to have diabetes. I was angry, disappointed at life and everything felt like a huge burden without any light in any tunnel.

Crap endocrinologists, the wrong advice and general teenage turmoil made me ignore diabetes “for a while”.

This “while” made me loose almost everything; my parents, family, friends and myself. And it almost cost me my life.

“Nothing works, why bother?”, I remember thinking. But it didn’t make diabetes go away. Rather the opposite.

Time and again diabetes would show up, scream loudly at me for ignoring it and smack me straight in the face. I was in the hospital from passing out on the street, and other times because I was in a diabetic ketoacidosis (DKA), close to death. And everything in between.

Once I got my proverbial shit together, it still took me years to get back to the excellent care my parents had once given me. Many, many trials and errors, wrong paths and terrible turns followed. As soon as I finally thought I had a foot firmly on the ground, the carpet was pulled out under me once again.

Luckily, I managed to find a road leading towards my path.

Diabetes IS a part of you, whether you want it to be or not. And it’s up to you to find a way to work with it in a way that works for YOU. It has to become second nature to you to check blood sugars, (gu)es(s)timate carbohydrates in a meal, take your medications and to accept your (new) reality. Not to mention finding the small things that make you feel better.

For me it was a long-winded road, the batter part of 26 years, to get to the point where I am today. And I still regularly find out new things about my life with diabetes. It’s a disease that keeps you on your toes, that’s for sure.

You cope because you have to. You don’t give up because it’s not an option. And just for being in this position, you deserve a huge medal! But along the way, you may just find a wonderful path through it all that is made just for you.

What are your biggest struggles and questions when it comes to diabetes? Let’s discuss in the comments below.

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Traveling with Diabetes

I truly love to travel, it’s one of the biggest passions in my life.

To get to see, feel, sense, experience and smell the smells of a new place, is sometimes what keeps me going through a rough patch.

I try to travel as often as I can, meaning as often as money allows me to. And although I’ve never pursued this passion without diabetes, it still makes sure to keep me on my toes.

Like the other week, when I was traveling back from Stockholm.

You know those low blood sugars that you do e v e r y t h i n g in your power to turn, but they just stubbornly hang on as if they were the ones in danger?

The ones that leave you in full panic mode, because what if your blood sugar doesn’t turn in time? What happens if you pass out and become unconscious?

Normally that’s not really an issue for me, my lows usually respond quite well and fast to my figured out and well-rehearsed treatment.

Just this particular low blood sugar wanted to stay with me. And stay and stay and stay.

So, for a little background info… Ever since I got my insulin pump, every time I fly I have to turn my basal rate WAY down. As in to -85% of the normal dose. It doesn’t matter when during the morning, day, night or evening I fly, unless I basically turn off the basal, I will invariably have a hypo.

The first couple of times when this happened I didn’t understand anything. I asked the company that manufactures my pump if, by any chance, high altitudes could influence it? Of course not was the answer, which was later also confirmed by my lovely diabetes nurse.

To this day I still don’t know why my blood sugar plummets as soon as I’m in the air. But that’s not the point of this story.

So, before this particular flight, my husband and I grabbed something small to eat before boarding the plane, because airplane food is beyond terrible and shouldn’t be eaten by anyone.

My blood sugar then was kind of highish, around 8 mmol/l (144 mg/dl), so I bloused a minor amount for the food, bearing in mind I had to turn down my basal rate anyway. It’s gonna work out, I reassured myself.

We boarded, I sat down, and turned down my basal before having to stow my bag in the overhead bin as we we’re seated by the emergency exit.

The take off was smooth considering the weather conditions. The fasten seatbelt light went off, and I went to grab my phone from my stowed bag to finish an audiobook I had on there. “Might as well take down the whole thing” I remember thinking.

Suddenly, I get a massive urge to just talk, talk, talk to my husband. This should have been my first sign that everything wasn’t right in the blood sugar department.

We talk about a future holiday and where we should go, when I suddenly get vertigo while sitting down in my seat. “Wooow, what’s going on?!”

I grabbed my Dexcom and saw it at 5.9 mmol/l (106 mg/dl) and sinking, fast.

“Oh shit.”

Basal was already basically turned off, so couldn’t do much more there. I grabbed a portion of glucose powder with 10 g carbs and chugged it, as I could feel how fast I was falling.

I waited the obligatory 10 minutes before checking both the Dexcom and manual blood sugar again. Dex said 4.5 mmol/ (81 mg/dl) and still falling. Manual check said 3.6 mmol/l (65 mg/dl).

“Fuck. What do I do?” I asked my rationally thinking better half.

“Have more glucose.” And I did. I had another 2 or 3 glucose tablets, munching on them like they were the lifeline I needed.

Considering my normal, total hypo correction is usually 4-8 grams of fast acting carbs, this was starting to worry me. I was up at more than double.

I was also running out of glucose tablets, as I barely ever need to use them anymore, I don’t carry an endless amount of them around anymore.

My darling husband called the flight attendant, asking her to quickly bring me some juice.

By the time the orange juice ran down my throat, I was in full-blown panic mode. Dexcom was still stubbornly pointing downwards.

This had now gone on for so long that my husband asked if they happened to have a Glucagon set in their onboard medicine kit, just in case. Of course, I hadn’t brought one with me. Why would I, I never need it and it’s one more thing for my poor back and shoulders to carry?

Turns out they didn’t have one. And even if they did, my husband, who has been brainwashed in how to use one of those things, wouldn’t have been allowed to administer it. It would have to be done by a medical professional.

As my blood sugar was still stubbornly going down, by this point at 2.4 mmol/l (43 mg/dl), I started to really panic.

Fast acting carbs were clearly not helping in time, there’s no Glucagon set and we still had 45 minutes until landing. If I pass out and lose consciousness now, I’m as good as dead. I don’t want to die here in an airplane, somewhere over Germany. Shit, piss, fuck.

I hear a flight attendant call out over the intercom: “One of our passengers is in need of immediate medical attention. Do we have any medical professionals on board?”

I had to laugh in the middle of my panic, that was a definite first for me. Very rarely have I needed to rely on complete strangers for help in treating a low blood sugar.

The most amazing thing was that on this flight of ca 200 passengers, there were 7 medical professionals. Seven, including a lovely doctor that kept me talking and drinking more orange juice.

The taste of the juice was so repulsive by this point. Eugh, how much I truly hated the taste of orange juice then. But it was my key back to life, so it was just to keep drinking it, especially as my blood sugar was still at 2.4 mmol/l (43 mg/dl).

After what seemed an eternity, panic, too many chalky glucose tablets and way too many glasses of yucky orange juice later, my new doctor friend told me to check my blood sugar again. 4.0 mmol/l (72 mg/dl) – thank all holy powers above, it was moving in the right direction!

By this point we were approaching landing, meaning I would have had to stow my hand luggage again. My husband kindly said that this wasn’t an option, and asked if they could re-seat us somewhere where I could keep my things right by m, in case things got ugly again.

Being a fully booked flight, the only option to re-seat us was in business class. I clearly didn’t care anymore at this point, I just wanted to land and get home to shower, have a hot tea and sleep. The other people in business class weren’t quite as understanding…

The last 20 minutes of the flight I got to sit in business class, which I had never done before. So, in order to lighten the mood, you could say diabetes got me upgraded for free. 🙂

Having buckled up for landing, I checked my blood sugar again. Seriously, my poor fingers. Anyway, it was 5.5 mmol/l (99 mg/dl) and I could finally breathe. Long, deep, oxygen filled breaths, which I hadn’t taken for the past hour or so.

Despite all the glucose and carbs I had had throughout this horror-hour, my blood sugar didn’t start to go up again until after leaving the plane. And it never went higher than 9.5 mmol/l (171 mg/dl), which was remarkable for that amount of carbs, which is guesstimated to be around the 60-80 gram mark.

My husband led me out from the plane on shaky legs, thanking the flight attendants for their amazing help and asking me if I was ok and if he should get me a wheel chair. Being mortified at the fact that diabetes caused me a scene, I told him I’d rather crawl to the exit than get in a wheel chair.

Getting home had never felt so good. Home where I was safe, and where I had Glucagon kits if I needed them. The day after was awful, I had the biggest hypo-hangover I’ve ever experienced, I was pretty much useless all day.

So, what’s my lesson in all this? 

Even though everything turned out ok in the end this time, doesn’t mean it always will. I can’t even fly with active insulin from a previous meal, it has to be off. Completely. Also, always bring your own Glucagon. Airplanes don’t have them.

So, in light of this, let me share my 5 best traveling with diabetes tips with you:

  • Figure out how YOU (and your blood sugar) react to air travel. Do you go high or low? Test, test, test and correct accordingly, either with food or with insulin.
  • Wear something medical alert-y, whether that’s a piece of jewelry or a tattoo.
  • Bring more supplies than you’d ever need for the same amount of time at home. It’s better to bring too much and not end up in the dark forests of Sweden without enough insulin… This includes hypo treatment. Bring L O T S of that. You just never know.
  • Check your blood sugar more often. Is it going up or down? (This is especially where a CGM is truly worth its worth in gold (as they don’t weigh much…))
  • Choose the pat down at security checks that use full body scanners (especially if you’re wearing medical equipment such as an insulin pump or CGM. You won’t get a new one if the scan damages your equipment.)

Although diabetes sometimes needs extra precautions before you set off, I would never ever stop flying and traveling. It’s one of the most amazing things in life, and all the extra work is worth it. You just need to find out how to counter-act it.

I would love to hear your travel tips, with or without diabetes – how do you make sure you stay healthy and well during travel?

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Lonely Diabetes?

Plus one is the loneliest number.

And my constant companion Diabetes knows exactly which buttons to push to make me feel lonely, alone and isolated.

It’s the time of family gatherings, meeting friends and spending time with those you love.

But if your (involuntary and unwanted) BFF Diabetes doesn’t play along, it doesn’t matter who else is around you.

This post is NOT about diabetes making you different from other people or that you have to things that are usually associated with being a drug addict, like shooting up and (sometimes) being paranoid.

It’s about feeling lonely although you have your best supporters, your true fan club, around you.

The other night, Dexter (my Dexcom CGM system) woke me up from my hazy sleep.

He had just buzzed 3 times, and because I wasn’t quite with it, I couldn’t remember what 3 buzzes meant – was I high or low?

I had only gone to bed 2 hours prior to this (quite rude) wake up call with a great blood sugar level, so I wondered which way it had gone wrong? 

Dex said “LOW”, below 4.0 mmol/l (72 mg/l). I took out Doris (my OmniPod and trusted ally) and checked my blood sugar; 2.1 mmol/l (38 mg/l).

Nothing was making sense to me at this point; I was sweaty, my head fuzzy, I didn’t recognize where I was or what I had to do next.

I told myself I had a pretty low hypo for being me and that I needed to get to those glucose tabs faster than lightning, right after temporarily lowering the basal on my pump to -85%.

In my mind I gracefully climbed over my husband in the sofa bed we were sharing and jetted straight for my suitcase, where I had packed the glucose. (We were on a trip, staying with fantastic friends)

But in reality I was probably half-suffocating my husband, stumbling around like a local drunk and made more noise than I could ever realize.

Anyway. I sat down on the floor to eat some of the glucotabs. The slightly chalky texture and the acidy taste of them only intensified my symptoms.

During some of my lows I need something to chew on after the glucotabs, something that won’t help the hypo, as it otherwise overshoot. But just the feeling to keep chewing makes me feel safer in an unsafe situation.

I found, again in my mind very gracefully, a bar of 85% chocolate in my handbag, and started munching, instantly feeling a little bit better.

To I keep awake, I tried to play some simple games on my phone, none of which were making any sense to me. Playing cards, letters and colors were all a big mumbo jumbo, although it’s actually 3 separate games on my phone.

In this very moment I realized I was feeling really lonely. 

This was despite having my husband snoring right next to me, and some other people sleeping in the same room. And I knew I could wake any of them up to keep me company and make sure I survived yet another hypo.

But I didn’t. Just because I’m not allowed to sleep right now, doesn’t mean others aren’t either, I thought to myself.

So I kept to my incoherent gaming, but couldn’t shake the feeling of being the loneliest person in the world in that moment.

As soon as I saw the number on my dexcom starting to go up, I put down my phone and went back to a hypo-sweat-drenched-sleep.

A few hours later, waking up with the biggest hypo-hangover ever, it made me feel lonely again.

I quickly resorted to some victim mentality thinking with thoughts like “why me?” And “no one understands me or what I’m going through or what it all feels like”, aka Loser-ville thoughts.

While I might have been right after yet another time with diabetes trying to kick my ass, I can’t forget what it has thought me about life.

A few of the useful and positive examples are: Being alone. Maths. Thicker skin. Acceptation. Pain. Fending for my life. Handling disappointment. That life is precious and frail. That I’m not invincible. Gratitude. Appreciation. Friendship. Health. Healing. Happiness. And, above all, the importance of Love.

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