Support and Christmas preparations

Very important for someone living with diabetes is the support of the people around them.  I think I did not realise how important this actually is.  I am a person who prefers to sort out things herself, because I don't want to bother other people with my problems and I think, I will figure it out eventually.  Now, I slowly start to understand that is OK to ask for help and to discuss what bothers me.  

When I was diagnosed with Diabetes 2, I searched on the internet about what to do to reverse the diabetes.  When it was not working, I got frustrated and blamed myself  but I never thought of discussing this with my doctor and/or asking for a referral to a specialist.  Of course sometimes I talked about things with my husband and with my friends,  but most of the time my reaction would be afterwards: "I will figure it out myself" 

Now that I know that I have diabetes 1 and that I have the insulin pump,  I start to see how important it is to ask for advice and to accept this advice.  It is still difficult for me, but writing it down in this blog  means that I really start to become aware of this.  

The most important support person is of course my husband.  How often already was he the one who had to deal with my mood swings.  One moment I am so happy when my BGL's are good, the next moment I am so terrible upset as the BGL's go up and I cannot understand why this is happening.  He tries to calm me down and he tries to put if all in perspective.  He went to the pump training with me and although my initial thoughts were that that would not be necessary, I now know that this was really important, as I should not exclude him from my "diabetic life".  Now he can advise and support me.  All I have to do is accept this.  

                                                            With my support of life

In the past I also waited way too long to contact my medical team.  Maybe I did not want to bother them because they would be too busy to see me.  Now I know that my diabetic nurse is just one email away and that he will make time to talk to me and that this will give me reassurance that I am on the right track.  

I know that accepting support and asking for help will always be difficult be me, but I see how important it is, not only when you have diabetes, but for everyone. 

So, the serious stuff out of the way, time for something fun. In three weeks time it is Christmas again.   Although you can eat "everything" when you are a diabetes patient, it might not be the best thing to do.  Knowing how much carbohydrates you eat and giving yourself the correct amount of insulin is a way to deal with.   I just want to deal with this a bit more responsible. 

Over the years I bought the magazine "diabetic living" regularly.  This magazine has articles about how to live with diabetes and it also contains nice recipes with the amount of carbohydrates.  I have four Christmas editions and I will "hunt" for our Christmas dinner in these magazines.  Later this month I will update you on the result.  

A Christmas cake needs to be made in advance, so that is already done.  Please see the recipe and the result below.  As the recipe might be really hard to read, but you like to bake this diabetic friendly Christmas cake, please let me know and I will forward it to you. 

 

Well, enough for this blog.  I hope you enjoy reading it and although I think it is hard to ask for advice, I love giving it and to be a support for someone else, so don't hesitate to contact me. 

Traveling with my new "best friend"

If you know me already a little longer, you know that traveling is my big passion.  I traveled extensively while being diagnosed with Diabetes, but traveling with the new insulin pump was a new experience.  I am just back from a  road trip of two weeks here in New Zealand.  I like to share some of the experiences with you. 

Let me start with the preparations.  On a daily base I already need to take quite some stuff with me.  I have this little pouch (photo one ) that contains: test strips, meter, blood test pen, insulin pen, glucose tables, needles, a full set to change the insulin container and infusion site for the pump, and my weekly dose of medication.  

This means that when I travel I have to calculate, how much of all these requirements I need to take with me  for the time I am away, plus some extra in case there is an unexpected delay.  Also there are a couple of extra things, like the BGL sensor, alcohol swipes and tape to adjust the infusion site.  Photo two shows everything I took with me for this trip of a fortnight.  Can you imagine what a pile it will be when I will go on a trip for three months again ☺ (hopefully sometime in the future again) 

 

    Photo 1                                                      Photo 2 

Two other new things I experienced, was making use of a spa pool and going for swim.  The pump is not water resisted. The BGL sensor and transmitter are.  A normal day to day experience is taking a shower.  For this I unhook the pump,  for a period of approximately 10 minutes.  As you will understand I wanted to enjoy the spa pool for a little longer than just 10 minutes. 

The advise is that you can be without the pump for two hours.  This means that you will not receive any basal insulin for this period.  I thought it would be good to go into the spa pool just after I had given myself a bolus for food, this would mean that there would be enough insulin in my body.  I did enjoy the spa pool, although in saying so, I think I was not as relaxed as I could have been.  I was a bit anxious about the working of the sensor and the transmitter. I was not so worried about the BGL's.  

The sensor and the transmitter kept working fine,  but my BGL's went up quite a bit.  I was without the pump for approximately 45 minutes and the result was that my BGL's went up to almost 15.  Not dramatic, but still I was not happy about this.  What did I learn? Whenever I like to do something like this again,  I have to give more "pre-bolus" so that the BGL's will not rise so much.  

Was it worth it? 

Eating and drinking are of course also quite different from the home situation.  We stayed in self contained accommodation most of the time, so I can prepare my food and I knew, most of the time, exactly what the number of carbohydrates were, so I could instruct the pump accordingly.  But part of the travel fun is going out for dinner, or as in this trip,  enjoy drinks and nibbles with friends and family.  For me it is extremely hard to "let go".  To "not care" and have BGL's that are a bit higher as normal.  I experienced some stress moments about this during the trip.  Back home, when I uploaded the information of the pump, it showed that  the average of the BGL's was not a lot higher than during a "normal"  fortnight, but still,  I will have to learn to deal with those "high's".

To end on a good "high".  I did some very nice walks during the trip.  I stood on the place where James Cook landed.  I climbed to the most eastern point of New Zealand and I hiked to some stunning waterfalls.  I definitely made some progress on controlling the BGL's while exercising.   

    

    Happy at Shine Falls                    Part of the 800 steps to the East Cape Lighthouse   

Traveling with my new "best friend" had its ups and downs,  but the overall control and management of my health was a lot better.  It will definitely not stop me from traveling and I hope that the world opens up again quickly.  Stay safe, where ever you are. 

First HB1AC result

As I wrote in the "meten is weten" blog of the 4th of September,  every three months I have a blood test done to measure the average HB1AC over this period.  As I started with the insulin pump mid July,  my first test over the full three months period was mid October.  

I was so looking forward to tell you all about the result,  as I was able to follow what my average mmol/L is, as I upload the information of the BGL sensor every week.   I was so happy with this information as it showed that since the 16th of July,  my average BGL's are 7.6 mmol/L.   This is such an improvement.  If you convert 7.6 mmol/L to HB1AC the outcome should be 46.   Of course I don't know exactly how accurate the BGL sensor is,  but I hoped and expected an HB1AC somewhere between the 45 and the 50.  

It takes normally 24 hours to get the result back and when the email of the GP came, I was so excited.  Unfortunately the result was very upsetting, as the email showed 56.  I was in tears,  I did not understand this at all.  How was this possible, after all my hard work, to get the BGLs to 7.6.  HB1AC 56 converts to 9 mmol/L.  I questioned everything, like would the blood test be done correctly,  but most of all, I questioned  the accuracy of the BGL sensor.  

Of course the result came in at a time I could not get hold of my diabetes medical team.  All I could do was email the nurse.  Luckily  the next day, he emailed me back straight away.  He could not answer all my questions, but as always he was good in re-assuring me, as he advised that he seldom had a patient who did so well and that 56 showed good management of diabetes control as the medical world  uses the target of HB1AC between 50 and 55 for this.  56 is close of course.  

However, he also advised about patients who are "high glycators".   Something I never heard off in my diabetes life.  It is good to have some explanation,  but this gives also more questions, like, will this have consequences for the future or could this be treated.  My nurse could not answer these questions, so I have emailed the specialist.  This story will be continued.  

Something completely different and something that made me happy this week was the 'find" of the perfect belt to wear the pump.  The pump comes with a clip, so you can attach it to your clothes.  This is not ideal, as there is a chance that it comes loose or it scratches your skin.  I was looking for something that would be small and convenient. 

You probably all know the feeling that "Facebook" can read your mind.  You get to see those irritating adds.  Well luckily for me, this one time they showed exactly the thing that I was looking for, a fitness belt with two small pockets with a zip.  Price via the side of the add was US $29.99 + shipping costs.  Well, of course being Dutch, I thought this was a bit over prized.  I started a search on internet and YES,  I found exactly the same belt, on a NZ website for just NZ $6.50 + delivery costs.  I ordered the belt straight away and I am so happy with it.  

                

An happy ending to this blog.  The next blog will be about living with the pump, while traveling. How will it be when I don't have my normal routines.  I will let you know.   

A new goal, "Half Dome in Yosemite National Park"

 As I wrote in my last post,  I have given myself a new goal.  I like to be able to walk up to the top of the Half Dome in Yosemite National Park in the US.  When this is going to happen,  I have no idea, but lets say in about two years time.  As you might have read (https://diabeatic.blogspot.com/2020/09/ ), when I was diagnosed with Diabetes 2,  I planned and trained to walk the Milford track.   To reach  the summit of Half Dome will be a real challenge,  but achieving it would be fantastic.     

                               

                                                        In 2003 I was half way 

The biggest challenge will be to get the BGL's right during this enormous exercise. At the moment,  the BGL's are all over the show, even when I go for a short walk.  To give you an example,  yesterday I did a flat walk off only two hours.  During this time,  the sensor showed me BGL's as low as 3.5 up to 13.  I started the walk with a BGL of 6.1, within 30 minutes,  I was too low and than after eating, but not compensating with insulin, the BGL went up, while I was walking and I had to give insulin to avoid going to high. 

Before I continue  I will explain first some basics of the working of the pump.  The pump continuously pumps a tiny bit of insulin into the body.  This is called basal rate and this is based on the calculation of how much insulin is required to get the BGL's on target (see below).  When I eat something,  I bring in on  the pump the grams of carbohydrates that I will eat. The pump calculates how much  insulin is required.  This is based on the carb ratio. All the "meten en weten" (https://diabeatic.blogspot.com/2020/09/) of the past have determined this. The insulin given is a bolus. 

Both the basal and bolus amount of insulin will help to keep/bring the height of the BGL to the target value.  The target is a number between 4 and 8 mmol/l, to live a healthy life and the calculations are based on for example to reach target value four hours after some food or in the morning before breakfast. 

I can totally understand, if all this information is confusing you.  Please contact me, if you like more information. 

Since I am using the insulin pump I have been doing quite a lot of walks already,  but unfortunately I have not found the correct way of controlling the BGL's.   The advise I have been given is the bring the basal rate as low as 20% or even stop given insulin at all.  This will need to be  done already one hour before I start the exercise.   Also,  I need to adjust the bolus amount of insulin as the body burns of the carbohydrates quicker, so less insulin is required.  It will be a lot of trial and error.  Hopefully the errors will not be too severe.  

I will keep you posted of my progress and about all the other walks I will be doing while training for this event. 

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.