Why, why & Why

We all know that time flies and life without the insulin pump seems a long time ago already.  It is only just three months that I am "hooked" up.   I remember that I was very anxious when I had the training and I wondered how it would change my life.   It has definitely changed my life.  Luckily in general for the better.   I spoke with my specialist and with the diabetic nurse and both consider me some kind of "miracle" as they have not seen any one who reacted so well to the use of the pump.  As you can imagine I am really happy about this.  But it is not all roses.  

The reason it goes so well in general is the fact that I do the carb counting really well.  It goes not so well when I go for a walk or after I have done a walk.  This is a learning process and I will write about this in my next blog: " my new goal,  a day walk".  

Another learning moment was a couple of weeks ago, when all of a sudden, within one hour,  the BGL went up above the 18 and I had not clue why.  Unfortunately it was not because I had a nice piece of cake.  It was even more alarming as the BGL's according to the BGL meter were 27. I got quite stressed and I was wondering: why, why & why.  

During the training, the diabetic nurse urged me to check for ketones when the BGL's are above 15.  Ketones is a new thing in this blog.   Ketones are bad for patients with diabetes 1 (and I was told, you dont have this when you have diabetes 2).  In short,  ketones poison the body.  You can measure this with the BGL meter and special test strips.  I was told that when the result is above 1.5, you need to look for medical attention.  Well,  the meter advised  me 1.7, so I had to take some action. 

                              

                                                                     Action required

I followed all the the roles in the training book.  First thing I gave myself insulin the old fashioned way, with the insulin pump as there was obviously something wrong with obtaining insulin via the pump.  Second thing  I did was drinking 0.5 liter water, to take care that the ketones would leave my body as soon as possible.  The third thing  I did was changing the infusion site as I had the feeling that this could be the problem. The fourth and final thing I did was calling  the medical assistance help line and after some questions of a nurse, I was advised to see a doctor.  Of course this all happened in the evening, so my husband and I went to the after hour service in the hospital.  In this current "Covid" world,  a place you like to avoid, even in New Zealand.  

Luckily there were no other patients and I was seen by a very friendly doctor within 10 minutes.  This very friendly doctor advised me straight away that I probably knew more about the insulin pump than he did.  But he also told me that I did the right thing by coming to the hospital and have a check up.  The good thing was that I did not feel unwell.   I was just shaken and very insecure about this all and I needed re-assuring.  The doctor did some checks and with a BGL/Ketone meter of the hospital, the values were re-checked as well.  This showed that the ketones were back to 0.4. This is within the normal range and BGL's were 19, so still high,  but not as crazy as 27 and not rising.  

So,  yes, I was re-assured that there was nothing serious, but I still had a lot of questions.  For instance, was my meter correct because the ketones had come down so quickly  and was I overreacting?  Well,  on both these questions I got the answers from my diabetic nurse.  Yes, ketones can come down so quickly, because as soon as your body gets insulin again, ketones are "chased" away.  And he also advised, no, I was not overreacting, it was the first time that my body did not receive any insulin and I did exactly what I was suppose to do.  It was a very good learning moment and now that this happened, I know that next time, I don't need to see a doctor,  but just do the things I did and it will all settle down again. 

 Spot the insulin on the infusion set

So why did the BGL's go up so quick and why did I not obtain any insulin.  It all happened after I changed the infusion site of the pump.  I need to do this every 3 days.  I was entering the little needle somewhere in the abdomen.  This is also the location where I injected myself with the insulin pen.  These  injections have caused that on certain spots there is scar tissue underneath the skin.  You can not see or feel this scar tissue, so it is kind of "hit and miss".   This time, it was a hit and because of this the insulin could not enter my body and was "send" back along the needle, out of my body. (This is called tunneling in the medical world)  See the photo of the infusion set with the needle and the wet spot of the insulin.   Unfortunately you don't see this when the infusion set is in. You really need to take the infusion set off, to spot this.                 

 For me, the solution to avoid this from happening again is to place the infusion set on the area around my hips and/or in my lower back.  So far, so good.  I now know what to do, when the BGL's suddenly rise above the 15 and I have no clue why.  

The Milford Track, my reward

This story,  I wrote a couple of years ago.  Although it is not recent,  it is still valid.  So that is why I like to share this story with you.  It was in 2014.  I was not using any insulin yet, of course still diagnosed as a diabetes 2 patient, but I was on the weight lose/keep fit journey, I am still on.  Hopefully in the near future I will be able to do a great walk like this again.  

From a blog of 2014: 

When I started my weight lose journey, I was looking for something to reward myself.  We all know that you need to reward yourself to keep motivated in your weight loss battle.  As exercise is  a big part of my journey, I was looking for a goal/reward in this direction.  So I came up with the idea to walk the Milford track.  You can do this as a (budget) free walker or as a member of a guided tour, the luxurious way.  As this was my reward, I decided to book this one.  I booked the track a year ahead.  This is  required anyway.  My goal was to be so fit, that I could easily walk the 4 day track and really enjoy it.

At the start of the track

Walking was already a part of my day to day exercise regime.  The Milford track is totally 56 km, divided over 4 days, so average 15 km’s a day.  However the first day is hardly any walking, the second day 16 km, the third day 15, with a decent climb and descent in there and the last day 21 km’s.  So I had to take care that I had enough stamina to walk for 6 hours or more hours a day.  

Approximately half a year before the day that I would walk the track,  I made the decision to quit my full time job and focus completely on my fitness and health. The Wither hills in Blenheim became my training area.  There are lots of walkways in this farm park.   I started with the lower walkways and I slowly built this up to round walks from and to our house of approximately 5 hours.  Mt Vernon is the highest peak in this area and you have stunning views from this summit.  Walking on the ridge is a reward on its own.   When the walking hours on its own where not a problem anymore I started to train with my back pack.   I booked the track for the 3^rd of February 2014, just a couple of months before my fiftieth birthday and YES, I was ready for it.  I think I was never so fit in my life before.

The whole experience was marvelous.  I walked the track together with a friend ( Sharon)  and we had a great time.  We were very lucky with the weather.  Only when we reached the summit on the third day, we walked in the clouds, so we missed the view here, but  overall it was a marvelous experience.  I was so pleased that on day 3, the day with the climb (altitude difference of around 700m ) and a descent of more than 3 hours, I easily could do the extra walk of 1.5 hours return to the Sutherland Falls.  I never had any muscle pain. I never felt exhausted, so unbelievable.

I had done it

Unfortunately I have to admit that blood sugar level wise, it was not the best week.  I thought,  all the exercise would mean that I could  eat everything that was offered on the track.  But this was not the case.  I did enjoy all the very nice food though.  Afterwards I found out that the blood sugar levels were way to high.  This was not only caused by me eating all the food, but I also learnt that my body had not been able to reverse the diabetes. 

Now I am looking for a similar kind of reward so I keep (even more) motivated to exercise and keep the weight off. Lucky that I live in New  Zealand, because here is a big choice for great walks.

"meten = weten"

In this blog I like to explain some basics about how diabetes is monitored, on a daily base and once every three months.   Just in my own words and what it means to me in my daily life.  "meten = weten" is Dutch for "to measure = to know".  But "meten = weten" I think is funny. 

First I will explain what needs to be measured every day.  And this is the value of the blood sugar levels (BGL's) in mmol/L.   This stands for "millimoles" per liter.   For a "normal" person, the mmol are average between 4 and 8.   For someone with diabetes it is the target to have mmol between 4 and 8,  but the mmol can be all over the show.  I have seen mine as low as 2.1 and as high as 23.  Up until the moment I started with the pump, I checked the mmol by finger pricking.  Normally 4 times a day, before breakfast, before lunch, before dinner and at bed time.  But with episodes of too high or too low BLG's, it could be up to 8 times a day.  Now I wear a sensor and luckily I don't have to finger prick that often any more. 

                         

                                 Old and new style of measuring the BGL's  

Unfortunately both ways of checking the mmol are not accurate.  Although you have an idea of what the mmol are at the moment of finger pricking, the value could differ between 1 and 2 points when the value is between 4 and 8 mmol.  When the value is above 8, the difference could even be between 2 and 4 points.  The producer of the sensor advises that the sensor could be 20% off the correct value.  In other words, I actually never know exactly what the mmol is. It is an approximate value.  What even more confusing is that the finger prick value and the sensor value can differ, although measured at the same time.  I hope you understand that this drives me made sometimes.   After the explanation of the second value, I will explain what this can mean. 

                 Which value is correct, the 10.1 of the old meter of the 8.4 of the sensor? 

The second value what is measured is the HB1AC.  This stands for glycated haemoglobin. For a "normal" person this should be between 20 and 40.  For someone with diabetes the target is to be as close to the 40 as possible.  I have seen mine as low as 48 up to 96, when I was just diagnosed.   The HB1AC is measured every three months.  This means that every 3 months I need to go for a blood test.  This is done at laboratory by a nurse, who tries as good as possible to find the blood vessels in one go. 

The result of this blood test will be forwarded to the GP.  For me this feels like every three month I have to do an exam and the GP will tell me that I passed or that I failed and that I have to do it again.  Of course I have "to do it again" as a good result never means that it will be good again the next time.  But  when the GP advised me " HB1AC have come down, well done" if feels like a compliment of a school teacher.  

It is not possible to compare the average mmol with the HB1AC.  A couple of months ago my blood glucose meter gave an average of 9 mmol, so when I was waiting for my result of  the HB1AC blood test, I was hoping that the HB1AC would be in the high 50 or low 60.  I think that you can understand that I was really disappointed that the outcome was 70.   Since I have the sensor, I can look up the average mmol via an app and at the moment this average is around 7.  This could mean that my HB1AC will be in two months time in the mid 40.  If this is really the case,  I will be a real happy diaBEAtic.  I will let you know. 

As I wrote before, the inaccuracy is confusing and also potentially "dangerous".  This is because the predict  amount of insulin required is based on this measured value.  So for example, in the morning, I wake up,  I measure (or at the moment see) that my BGL's are 9.5.  I calculate the amount of carbohydrates (carbs) in my breakfast.  I will explain in another blog about "carb counting" but let's say my breakfast contains 35 gram of carbs.  For me this means I need 6 units of insulin to take care that the insulin compensates my food.  I also want to the BGL's to be between 4 and 8 at lunch time, so I will inject a couple of units more.  (how that works, I will tell also in another blog) . 

For this example, I will give my self 8 units of insulin.  If the 9.5 was too high and as explained,  above 8 mmol, the difference can be 2-4 mmol, and let's say it was 7.5,  I should have injected ( or "advised" the pump) only 6 units of insulin.  This then can mean that around coffee time, I start to feel unwell and I will have a hypo, so BGL's below 4 and this can potentially lead to a coma (mmol 0) .  In my case, I never went really that low, but I had several hypos. This than means that I needed to eat something extra.  Nice of course to have something sweet with my cup of coffee,  but it also caused the weight gain.  

So it is quite a complicated matter.  I constantly think about this,  but I totally understand that it will take some time for, for example, someone who is just diagnosed with diabetes to get his or her head around this. 

One of my next blogs will be about "carb counting" and how to correct BGL's which are to low or to high.  "See you than" 

  

This is an example of the measurements of a full day of my sensor.  This is an extremely good day.  As you see, my BGL's ( the ........... line) rises a bit after I have eaten something but is around target again after 4 hours. 4 hours is the time that insulin does do its work. 

Beat- iT

In 2015 I started also a blog.  I never shared it, for several reasons, mainly it costs time and I was really busy with other things.  Now that my working career is (almost) over,  I have time to "work" on a blog.  This story is from the 2015 blog that was called "Beat-iT.  As I think it some good back ground information I still like to publish it.  Things have changed as you read in the  post "from 2 to 1", but in a way, I try to "Beat"  the Diabetes again. 

Blog of 2015: 

Why  have I chosen the name Beat-iT?  Of course Bea is obvious and the capital T stands for  my last name.  But the main reason behind it is the fact that I hope that I finally beat the fight with my weight.  My struggle for life. And I like to keep winning this fight. 

Before August 2011

After August 2014

The first time that I  remember that I put myself on a diet was when I was around 16 years old.  That is quite a while ago.  Since than my weight went up & down.  I think there is hardly a diet in the world that I did not follow and the opposite about this is, that I think I have eaten all the good things that are on the market as well.  The situation at the moment,  I still love food, but I am not dieting anymore.  I just am very careful about what I eat and I exercise quite a lot.

I won the “battle”  in September 2011.  Or better, I started my last “weight war”.   I had to because I was told I had Diabetes 2.  My weight was around 112 KG’s at that time.   It took me approximately a year to lose 40 KG.  Now I have lost 10 more KG’s and for quite a while now I am pretty steady on this weight.

Unfortunately the Diabetes has not reversed.   First I took only medications, now I am on insulin and medication.  However, I feel good and I know that my life has improved enormously.  Even better, the amount of clothes I can put in my suitcase, what a difference a couple of dress sizes make.

Through this website, I will tell you stories about my experiences in the past years,  I will advise you about recent small battles that I still have,  there will be some advice and some of my favourite recipes.   Let me know what you think and please if you like some more information about something, just let me know.  I might be able to write a new chapter about this.

2020: 

On this website "Diabeatic" I will tell you stories about my experiences in the past years and about my day to day life.   I will update you about the small battles I still fight. And I like to share some of my favourite recipes.  Please leave your comments, this will motivate me and give me ideas for more blogs.  

                                                2017, I looked pretty good 

My " coffee"

If you have been reading my Dutch beatourne.waarbenjij.nu  website  or if you are one of my (Facebook) friends, you will have a good feeling that I enjoy having a cup of coffee.  In  this blog,  I like to explain why.   I did write this blog while I was in my diabetes 2 stage of life. I was trying to loose weight and of course I managed the blood sugar levels as good as possible. 

               

                                                         

When I was diagnosed with diabetes and knew that I had to lose a lot of weight, I knew one thing, I did not want to give up "my coffee".  I love coffee, but not only the taste, it is more.  For me, having a coffee is always a special moment of the day.  A time to relax, either at home, in a nice cafe or somewhere on a nice outdoor spot. And to be honest, it is also about what  comes with the coffee, a  nice slice,  an enormous muffin,  great home baking,  or when we were in Holland for example, a "tompouce" ( vanilla/custard slice ).  

Drinking  coffee  influences two things.  Firstly it adds calories to the daily  total and secondly it will bring the blood sugar levels ( BGL,s ) up.  With a coffee I  mean,  a nice cup of coffee like a latte or cappuccio and a sweet treat.  I first investigated what coffee is doing to the blood sugars and although there are opposite theories about the effects of drinking coffee, in general, it is OK to have a coffee, as long it is in moderation.   Than there is the lactose in the milk, this has also an effect on the BGL,s.  The thing that would spike the BGL's the most is of course the sweet treat, because, as you understand, for instance  a caramel slice is full of sugar.

Coffee makes me smile
 

Calorie wise a regular milk latte or cappuccino adds quite some calories to the daily total, but a trim/skim version or an homemade filter coffee with frothed milk is not to bad.  Luckily there are thousands of low calorie, low sugar or sugar free baking recipes to be found.  Naturally when you try to lose weight or don't want to gain weight, a black coffee without anything or maybe just a dry biscuit is the best way,  but we also want to enjoy life, don't we!! 

In my weight lose journey, enjoying life is/was certainly one of the main important things.  Because I am an emotional eater as well, so feeling down would mean automatically that I would eat more. So my coffee  became a reward, a feel good moment, a looking forward moment, well I can actually say, it became "my moment of the day" 

Coffee in China

A latte or cappuccino with a healthy treat has become the substitute for all the bars of chocolate, bags of crisps, packs of biscuits and all the other large amounts of food I ate before I was diagnosed with diabetes.  

In 2014 and 2017 my husband and I made a trip of half a year around the world.  If you travel you are tempted to go for a big breakfast, some fancy lunch and/or a nice restaurant meal.   For me this would have big consequences.  I really had to take care that I would not gain to much weight during the trips and of course I had to manage my BGL's.  So breakfast was in general just as at "home", a oats porridge and lunch was a sandwich.  We traveled with a campervan, so at night I  did the cooking.  But as it was a holiday, I made it my  goal to find the best spot for our daily coffee.  While preparing the trip I not only looked for the "most sees"  but  also what the locals thought was the best "coffee in town".

Making coffees, I love this too

Furthermore I am also a certified barista.  In 2012 I did a 5 day course and I learned I to make coffees professionally.  So I know how a coffee should be made.   

I hope this gives you a feeling of why coffee is so important to me. 

From two to one

This is a quick first story about my "road" from being diagnosed with Diabetes 2 in 2011 to

being re-diagnosed with Diabetes 1 in 2020.  There is so much to explain and I can not do this in just one blog.  You will have questions about some terms and abbreviations I am using.  I will explain this in future blogs.  This is just the beginning. 

In September 2011 I got diagnosed with Diabetes 2.  Was this a surprise?  Maybe at the time, but in hindsight,  not really.  I was overweight and as you might know,  this is something that might cause Diabetes 2.  Of course being overweight is not the only cause as it is genetic as well, but being over 100 kilograms really does not help of course.   As I was also quite active,  the Diabetes did not reveal it self until I was in a period that I was not so active.  This was the New Zealand winter of 2011.  It was too cold to go for walks. In April 2011 I walked the Hollyford track.  In the months before I walked this 3 days  track, I trained a lot to get the stamina to be able to finish this track.   In the months afterwards, I did not exercise a lot and "there it was" 

I started to read a lot about Diabetes 2 and I read that it was possible to reverse it.  I was determined to reverse the diabetes.  I was sure that by losing the weight  and eating the right things,  I would be Diabetes free again.  In the beginning it looked like this.  The three monthly  HbA1c tests were good and the average readings came down to almost normal.  Normal results have to be below 40.  I started on 98 and came down in two years to 48.  I thought I was on the right track.  Unfortunately my body responded differently and slowly the readings went up again.  Up to 85 even.  I was really frustrated and upset about this. 

                                               Walking the Hollyford Track in 2011 

                                                     just before I was diagnosed 

                                               Walking the Milford Track in 2014

                                    I lost 40 kg's and still hoping to be diabetes free

                                                              
This meant that every time I had to increase the medication I took, up to the maximum possible and finally I had to inject insulin.  It was very hard to accept that I did not win the battle with the diabetes and never would be able to win this. Yes,  I did win the struggle with my weight but it was very difficult to be positive about this.  I really did not understand why the diabetes did not go away.  

I started with the long term (background ) insulin in 2015.  Soon enough I also had to inject myself with short acting insulin.  A side affect of  injection insulin is weight gain and although I tried to avoid this, I saw the numbers on the scales creeping up again.  Another, even worse side affect, is getting " hypos" (Blood Sugar Levels too low ).  To correct a "hypo" means that I had to take extra food.  So actually I got in a catch 22 situation.  As you can understand, this was very frustrating and unfortunately for me, being frustrated means extra food again.  

I also started to doubt my self.  I had done so well.  Everyone kept telling me this.  I lost so much weight,  I was very active,  I kept food diaries, I knew exactly the number of carbs I was eating, so I injected the correct units of insulin.  But the Diabetes became more and more progressive.  I needed more and more insulin but still I was not able to bring the HbA1c back to acceptable levels.   Of course I visited my medical team on a regular basis.   They kept telling me, don't worry,  you have done so well and I should not worry to much, as the numbers were still not too bad, but I was worried and in times very stressed about it.   

                                            Walking the Routeburn track in 2016

                                       Trying to manage my weight and Diabetes

Finally in 2019 I met with a Diabetes Clinical Nurse Specialist of the Wellington Hospital and he initiated a special blood test, as he suspected that maybe I was a Diabetes 1 patient.  He was right.  I was re-diagnosed with Diabetes 1 in February 2020.  This was actually a relief for me.  It explained the doubts I had,  it confirmed that I had done well and it feels like a new start.  

It is now July 2020, 5 months after being diagnosed with Diabetes 1.  A week ago I got an insulin pump.  A new learning process, but I can use everything I learned and experienced when I was Diabetes 2 patient.  A new chance to win the "battle" with Diabetes although  I know now that I will never be Diabetes free again, but together with my "new best friend" (the pump) I will take care that being  Diabetic will not have any influences on having a good life.   "Diabeatic" will proof and share this with you. 

                                                   My new "best friend" 

Why "Diabeatic"

Welcome to Dia-BEA-tic

Welcome to my blog about living with Diabetes 

I don't think the name of this blog needs a lot of explanation.  It is simple,  My name is Bea and have Diabetes.  The main goal of this blog is to write a kind of diary, so I don't forget all the things I experience or that I have experienced in the past.  The second goal is to share this information with my friends and other interested people, to show them what it is really like to live with this illness.  Another goal might be, in the future, to help other people who will be diagnosed with Diabetes and who might need some practical information.  

In no way this will be a medical blog.  It will be a blog to show that life certainly does not stop when you are diagnosed with Diabetes.  When I was diagnosed in 2011, I bought a  "Diabetic Living" Magazine.  One of the first posts I read was from someone who advised that being diagnosed with Diabetes was one of the best things that happened to her.  Well, meeting my husband and traveling around the world with him was certainly a better thing that happened to me, but since I have been diagnosed with Diabetes my life has certainly changed and in a lot of things indeed for the better. 

For one thing, and this might sound ridiculous, it made me a healthier person.  I lost a lot of weight and I started to exercise more.  I make healthier food choices and I enjoy little things more.  Of course, I have my moments and I can be really stressed about it all, but yes, after all, I am only human. 

There is a lot to tell, but before I start the first story, a bit of an insight of who I am:   

I consider myself a "woman of the world".  I am born in the Netherlands and I have moved to New Zealand.  I had a lot of different jobs, although I still consider myself an "airline girl".   I am recently retired which will give me even more time to enjoy life.  My main hobbies are baking, drinking coffee and travel.  In general I am a positive and optimistic person, although as I said before, I am only human and I can be also pretty emotional about things.  I am happily married and also pleased with a lot of good friends.  I consider myself as really fortunate.  

I hope you enjoy ready my stories. If you like to be informed about the new posts, please add your email address.  And remember: 

 "Happiness is a journey, not a destination"