To pump or not to pump... That is the question.

On Tuesday morning, I had another appointment with Lisa, at Integrated Diabetes Services in Philadelphia. It began badly; I got the time wrong! My alarm went off at 6:00am and it was followed seconds later by a Skype call. I jumped out of bed, with my pillow still imprinted on my cheek, and called her back.

As usual, the appointment itself was a success. This time we talked about hypoes; quite an apt topic of conversation considering I seem to have been having quite a few recently. I learned that a hypo can affect you for around 6 hours afterwards. This is due to your body producing counter-regulatory hormones, like glucagon, which can load 300 calories’ worth of glycogen into your bloodstream as part of the body’s fight or flight mechanisms. I also learned, that you can feel the symptoms of a hypo when falling from say 300 to 200; this is called a relative hypo because you drop quickly, but not within the hypo range.

Lisa began talking to me about the best ways to treat a hypo. It turns out that I need to brush up on the glycemic index! When you treat a hypo, you should eat food with a high glycemic index, to prevent a low you should eat food with a low glycemic index; this should also take into account the insulin on board. So... If blood sugars are low after a meal, too soon after a meal, there will still be insulin working; hypo prevention will need to take this into account.

The best food to treat a hypo is dextrose-based food: some sweets, dextrose tablets, Lucozade. Unfortunately for me, both dextrose and Lucozade immediately transport me back to the early days following my diagnosis, where hypoes were frequent. Now, I can’t taste either without wanting to be sick! I usually try and drink apple juice; it’s sweet but not too sweet and liquid so is absorbed quickly. Lisa gave me a useful table with which to calculate how much carbohydrate is needed to figure out how much carbohydrate to use to treat hypoes in varying circumstance:

“Use this guide to help determine the amount carbohydrate needed:

Weight          1 gram of carb will increase BG by

60 lbs or less…………………… 6 pts

60-100 lbs……………………… 5 pts

100-160 lbs…………………….. 4 pts

160-220 lbs…………………….. 3 pts

greater than 220 lbs…………….. 2 pts

Weight (lbs)	BS of 70	BS of 60	BS of 50	BS of 40	BS < 40
< 60	8g	10g	12g	15g	18g
60-100	10g	12g	14g	16g	20g
100-160	12g	15g	18g	20g	25g
160-220	15g	20g	23g	25g	30g
> 200	20g	25g	30g	35g	40g

Mathematical calculation of carbs required:

(Target BS - Actual BS) /   BS Increase per gram of carb

Example:  Jim has a BS of 45 and wants to raise it to 120 (120-45=75).  1 gram of carb will raise him 4 pts, so Jim needs (120-45)/4, or 19g of carb.”

I have yet to experiment with this... Often, when I hypo I am not compus mentus enough to make a rational decision...

The second thing Lisa and I discussed was a particular brand of insulin pump, the Medtronic pump, which has a predictive alert if your blood sugar is on the rise or fall. This got me and Lisa onto the subject of pumps..

Now. As you will know if you have read my previous posts,  have been dreaming of getting an insulin pump for years. In England, the criteria for getting a pump is rigid; amongst other things, you have to have an HbA1c of consistently >8%; you need to have hypoes that you cannot treat yourself. I had been thinking of possibly trying to get a pump over the summer holidays. As I have described before, my doctor is not too keen on the idea. So as a precursor, I decided to email Scholars, my medical insurance provider to see whether they would cover my insulin pump. They emailed me back, almost immediately, with a list of criteria not dissimilar from the list I would be navigating in England! It said:

“Precertification of the services related to the insulin pump would be a 2 step process.  The first step is to determine whether you would meet the eligibility requirements for an insulin pump:

In order to complete this step, would you please obtain written documentation from your treating doctor that the following criteria have been satisfied?:

External insulin pumps (with or without wireless communication capability) are considered medically necessary for individuals with diabetes in any of the following groups:

1. Individuals with documented diabetes mellitus meeting all the following criteria 
   (a-e):
1. Completed a comprehensive diabetes education program within the past two years; and
2. Follows a program of multiple daily injections of insulin; and
3. Has frequent self-adjustments of insulin doses for the past 6 months; and
4. Has documented frequency of glucose self-testing an average of at least 4 times per day during the past month; and
5. Has documentation of any of the following while on a multiple daily injection regimen:
• Glycosylated hemoglobin level (HbAlc) greater than 7.0 percent; or
• "Brittle" diabetes mellitus with recurrent episodes of diabetic ketoacidosis, hypoglycemia or both, resulting in recurrent and/or prolonged hospitalization; or
• History of recurring hypoglycemia or severe glycemic excursions; or
• Wide fluctuations in blood glucose before mealtime; or
• "Dawn phenomenon" with fasting blood sugars frequently exceeding 200 mg/dl.
2. Pre-conception or pregnancy to reduce the incidence of fetal mortality or anomaly; or
3. Individuals with diabetes mellitus successfully using a continuous insulin infusion pump prior to enrollment, and have documented frequency of glucose self-testing on average of at least 4 times per day during the month prior to enrollment”

When I read this, my heart sank... I’m not sure my doctor here in Korea, sweet as he is, would actually know whether or not I fulfill criteria a-e (I do). It was only when Lisa mentioned the Medtronic pump that I wondered if she, or Gary, at IGS would be able to write my recommendation instead. Straight away, Lisa said she would be more than happy to vouch for me; the only potential problem was that neither she nor Gary are actually doctors; they are “diabetes educators”. So, I emailed Scholars back and, to my delight, they said that Lisa and Gary’s qualifications would be more than adequate. Yes! So... Lisa is writing my pump recommendation and I have my fingers and toes tightly crossed that step one of Operation “Finally Getting MJ a Pump” goes without a hitch... I will keep you posted...

The final diabetes-related area of interest from the last few weeks actually really has nothing to do with diabetes: I love writing. I have loved writing since I was a kid, but never really done anything about it. Earlier this year, I decided to bite the bullet and sign up for an online creative writing course. Week 1 was all about writing from ‘the self’; tapping into emotions and writing from experience. For our first exercise, we had to “Write about an incident that made you jealous, afraid, angry, joyful, miserable. Choose just one of these emotions for now. Try to find ways to show that emotion as we’ve discussed, rather than telling. For the purposes of this exercise you need to write at least a couple of good paragraphs and no more than around 300 words.” 

Perhaps unsurprisingly, I chose afraid, and I was immediately transported back to March 6th, 1995: the date of my diagnosis. I’d like to say that was the most afraid I’ve ever been, but I think my fear of dying on that day was later surpassed by the fear of living with it day in, day out. Luckily, I am learning, slowly, to leave that behind.

And here, to finish today’s post, is my first creative (somewhat dramatic) writing exercise.

The words he was saying morphed slowly into nonsensical sounds. My thoughts were heavy in my head. Too many of them. Weighing it down. My tongue ran over my cracked lips like sandpaper. My eyes flickered open; shapes blurred, lights blinded; it was all too white, too bright. I wanted to leap from between the crisp, clinical sheets in water; any water, as long as it was wet. I was desperate to feel moisture against my skin, in my mouth. But my body wouldn't move, and, even if it did, where would it go?

The voices continued to ebb and flow around me, my knuckles whitened as they made sense for a split second before falling away to somewhere just beyond my grasp. I knew they should make sense but they wouldn't and my heart quickened as I tried to move; still my body refused to obey.

I could feel the cloud enveloping me and I fought with what little strength I had to resist it. In my mind, my body was thrashing, fighting against the darkness. My heart continued to speed up, I felt a hand gripping mine as the panic rose up inside of me. Light dazed my eyes, sound swirled around me and my wasted muscles tensed as the darkness claimed me and the world went out.

Life gets in the way.

Sometimes, something comes along in life that eclipses everything else; this can be momentary or long term. For me, it’s been for the last few months, since my last post. Even my diabetes had receded to the darkness in the back of my mind somewhere. But, looking back now I can see how pivotal the time has been in terms of my blood sugars. I have a lot to share.

Slowly, I have been working with Lisa at Integrated Diabetes Services to tune up my doses, and the amazing thing is that I am beginning to get somewhere. I have made a number of changes since my last post. I have decided to stop using my RapidCalc app for a while. I was finding that I was blindly putting in numbers and had no real ownership over them; my ratios were the opposite way round to the norm and I was effectively guessing the impact exercise was having on me.

So I’ve gone, voluntarily, back to the diabetes dark ages and begun to calculate my doses myself. Initially this was quite daunting, especially when I remember how relieved I was to find the app in the first place. The calculations stretch my brain, but what they also do is make me stop myself in the whirl of the school day: I now have to force myself to take the time to think about what I am eating, record my doses and actually eat.

When I eat, I now have to:

1. Test my blood (no change there!).
2. Subtract the number I want my reading to be (117) from the number I am.
3. Divide the number I get by 40 (my current estimated correction dose, this should bring my level down to the target)
4. Count my carbohydrates (more on this later)
5. Divide the grams of carbohydrates by the mealtime Insulin:Carb ratio (5.5 at dinner time, 9 at lunchtime, 8 at breakfast if I haven’t exercised the previous day, 11 at breakfast if I have exercised the previous day)
6. Add the two numbers together
7. Subtract 10%, 30% or 50% if I am planning to do exercise in the next 1-1.5 hours
8. Round to the nearest whole number
9. Inject!

Now... This sounds worse than it is...Actually, it’s been surprisingly easy. It just means that wherever I go now I am accompanied by my lime green notebook and pen! And I am trying to remain realistic: I will not ALWAYS feel like calculating in this way, or recording. So if I don’t, I don’t. I have always made myself feel guilty for this in the past and madly recorded up to 3 months’ worth of readings and food intake the night before an appointment. But this isn’t the purpose of recording these, the purpose is to learn from the records  step by step. And, over the last few months, I have realised that not keeping perfect records is ok: life does get in the way, for better or worse.

To help me keep better records, I have tried using Google Spreadsheets, attached to my personal email and accessible to me wherever I am. Still, this has not been manageable enough. So this week, following a meeting with Lisa, I decided to fully geek out and use the auto-sum functions to do my calculations for me.

The columns are linked as follows:

• I enter in my blood sugar, and the correction (C) column takes away 117, my target level, to leave the correction factor.
• I then have to enter in the amount of carbohydrate (CHO) in my meal/ snack.
• The C Dose column then divides C by 40 (my personal insulin sensitivity) to calculate how much insulin I need to take to bring my levels down to the target range.
• When I enter in my ratio, the dose column then divides the CHO by my ratio to figure out how much insulin I need to cover my food.
• The DOSE column, then adds my correction dose and my food dose together, before rounding it to a whole number.
• If I am planning exercise, I then enter in the details and the activity multiplier in the Factor column.
• The FINAL DOSE column the multiplies my DOSE by the Factor and rounds it to a whole number to give me the final dose I need to take.

While quite complex, this method means I still have to input data (my blood reading, CHO, I:C ratio and the exercise factor) giving me control over the calculations, but the spreadsheet does the maths for me: the perfect partnership!

Here is a screenshot of my geeky handiwork:

Click here to see the actual Google Doc; the auto-sum records are only from May 15th on and if you would like to access it you will need a google email account.

The upshot of this is that, with the regular help of a professional, I finally feel in control of my blood sugars. They are not yet perfect, but they are better than they have been for a long, long time, maybe ever. And, I understand them; I can account for hypoes and highs in a way I haven’t been able to do before.

Lisa has also introduced my to carbohydrate factors and meal adjustments for exercise which are helping no end.

A carbohydrate factor is the amount of carbohydrate a food has per gram. When I’m at home with my food scales, I can use this to figure out how much carbohydrate is in what I’m eating by weighing the portion and multiplying it by its carb factor. I now have a number of sheets full of lists of foods and their carb factors which are quickly becoming indispensable!

The exercise adjustments are also helpful: a numerical way of incorporating exercise into diabetes calculations. The insulin dose is multiplied by the ’activity multiplier’ which depends on the duration and intensity of the exercise if exercise is planned for within 2 hours of eating. Which is something else I’ve learned and applied over the last few months... The best time to exercise is within an hour and a half to two hours after eating, this requires mealtime adjustments (hence the activity multipliers) but ensures that there is enough insulin in your system to allow the muscles to use the glucose in your blood stream for energy. And, so far, with some tweaks along the way, it seems to be doing what it says on the tin... I am, for the most part, avoiding hypoes, and ending up with a reasonable level post exercise. Thus, I am exercising regularly, and feeling confident to do so.

My final breakthrough over the last week or so, was an overnight basal test... My blood sugar before bed was 92 (5.1 in old money), 114 (6.3) at 3:00 am and 115 (6.4) on waking. An overall rise of a respectable 23 mg/dL (1.3 mmol/l): pretty darn good and completely unheard of! Now, I just need to do a second one to check that it wasn’t a fluke...

So, all in all, while life has not necessarily been smooth sailing over the past 3 months, I am at least feeling like I am making headway with my blood sugar control. My last HbA1c in April was 7.9% (down from 8.4%): nowhere near in range, but going in the right direction!

A rollercoaster week: food ratios and basal tests.

The main things to have come out of this week are the realisations that:
a) I am challenged when it comes to working out ratios; maybe I need to get some of my kids onto it - I reckon they'd be less stumped than I was yesterday!
b) I have become VERY reliant on my super-duper-whizzy Rapid Calc App...

These realisations began to manifest themselves on Friday when I emailed my week's worth of readings to Lisa. I forgot, that I had given her the wrong ratios when I filled in my pre-assessment form; I changed them to give me slightly more insulin at breakfast time and at dinner time. But it's the form these ratios came in that caused the confusion!

My Rapid Calc App, wonderful though it is, calculates my ratios per gram of carbohydrate so they come as a ratio of Carb:Insulin (in my case, I was taking a ratio of 1:0.18 at breakfast and 1:0.2 at lunchtime).

After receiving my weekly readings (along with some incomprehensibly scribbled notes about having changed my ratios) Lisa emailed back, somewhat confused about my ratios, and suggested I change my breakfast I:C ratio to 1:7 and my dinnertime ratio to 1:8. I had absolutely no idea what that meant in terms of my C:I ratios.

So... I sat down and tried to work it out (on the piece of paper J had used to remind him to take his wash bag skiing!). I then appealed for help on Facebook because I tied myself in knots!

Eventually (and with a little mathematical help from my -disappointingly male - friends, where's a girl who can do ratios?!) I reached the conclusion that the changes that Lisa was proposing would mean my ratios would change from 1:5.5 to 1:7 at breakfast and 1:5 to 1:8 at dinner time. I wasn't sure about this. Since my basal has been reduced, I have found I have needed to up my ratios slightly. 

Yesterday I tried the change, along with lowering my basal from 16 to 14 again after a drop of nearly 60 md/dL (129 to 71) on Thursday night.

But what I found was that I was running consistently high. I haven't had a reading below 233 since Friday evening and it's now Sunday afternoon. Today, I emailed Lisa back and explained that I was going to put my ratios back to 1:5.5 and 1:5. At least then we have a starting point that doesn't mean I'm always high. 

I hope that she won't think I'm panning her advice - I really want to get my levels down - but, today, when my readings have been high, I just really want them to come down.

Overall, my analysis was better this week! I analysed twice, yes, I know, I'm home alone and I have time to play with! First I analysed my readings using my usual setting-myself-up-to-fail parameters. Better than last week: 32.5% of my readings were in range. But then I repeated the analysis using the ranges I agreed with Lisa (90-160 pre-meal and <160 2 hours after eating); this time 47.5% of my readings were in range. I am aiming for 70% and <3 hypoes. I am crawling in the right direction, finally!

Christmas Day again?!

Today I woke up at 5am. Normally when I wake up around this time I get irritable and annoyed, with the thought that my alarm is not going to be long at the front of my mind This morning was different, a little like Christmas morning when waking up early is only ever a good thing! As a child, anyway… This morning it was with a mixture of excitement and apprehension that I signed into Skype around 6am to await my ‘First Visit’ with Dr. Scheiner’s Integrated Diabetes Service. I wasn’t disappointed.

The appointment began with a face to face with Dr. Scheiner and a nurse, Linda, also a type 1 diabetic. It introductions and questions about Korea and then it was just me and Linda to talk nuts and bolts of daily diabetes care. She had my records from the last few weeks in front of her and kept referring back to them throughout the meeting.

The main things I took away from the meeting were:

• My current target levels are slightly unrealistic. I have been being hard on myself, trying to get my levels within this magic range of 74 – 126. While these are, admittedly, the ranges of perfection, it was nice today to be told that I can relax these limits just slightly: my premeal target should (for now, at least) be between 80-160. After meals, I am looking for a rise of no more than 200. I should also be aiming to have no more than 3 hypoes a week.

• The importance (and method) behind accurate basal testing. Lisa told me that I really need to do some day time bolus tests, especially as my Levemir seems to be holding me fairly stable overnight. To do this, I need to fast over each mealtime on different days. Breakfast-wise, I should have a large snack before bed, then take my morning Levemir dose, but then eat nothing until 11 or so am, testing every so often to check, Over lunch, this would mean an early breakfast before testing intermittently between 11 and late afternoon. Dinner time would be similar: lunch as usual, testing from around 4 and having a late dinner. Doing this will help me to judge whether my basal dose is also steady for the day: the idea being that my blood sugars should vary little with no food or bolus insulin floating around my system.

• As a general day-to-day rule, I should try to leave a 3 hour gap between meals and snacks to avoid topping up the food already in my body, thus not giving my levels time to return to “normal”.

• Where possible exercise (exercise?!) should be done 1 and a half to 2 hours after a meal, and I should reduce my bolus dose for that meal by a third. This is new to me. I always thought that exercise was best done before a meal! But I guess the body needs insulin to feed its muscles and just before a meal insulin levels are too low to do this properly. 

There were a couple of tweaks made to my lunch- and dinner-time ratios too… Now I just need to see how it goes!

By the time I’d reached school I’d received a summary, from Lisa, of all the things we’d talked about.

I am feeling positive and looking forward to the next appointment which I have scheduled for a month’s time. In the meantime I have to send my written records (more detailed! I somewhat trailed off last week…) to Linda every few days for advice on adjustments between now and the next appointment.

I am so grateful I browsed Amazon that day… Just looking to read about other people’s experiences with what I live with every day. If I hadn’t, I wouldn’t have found Dr. Scheiner’s book and as a result, wouldn’t have had this morning’s meeting. It feels like I have some support. And, while I do feel a little frustrated that I am not able to see through the fog myself, I do have the clarity to realize that subjectivity is a huge impairment to this.

My final point for today is that writing this blog is finally starting to help: analysing and recording my blood sugar levels has made me do at least some of it on my own; I am starting to see patterns I couldn't see and making changes myself. I just need some extra help to make sense of it all.

Portion sizes and the GI Index. I have a lot to learn!

I’m feeling a little more positive this week. On Tuesday I had a pretty bad day, but a game of Carcassonne with friends helped me to see the brighter side of life again!

My blood sugars have not been hugely better: last week my standard deviation was303, this week it was 299; last week 16% of readings were in range, this week 19% were (click here for this week's analysis in all it's sugary glory!). Towards the beginning of this week I was waking up in the 300’s, which had a hugely negative impact on life in general. Having attempted to figure out my overnight basal doses a few weeks ago, I had lowered my evening Levemir dose from 18 to 14. It turns out this was far too big an adjustment and resulted in the highs. I then put it up to 16 and had a couple of days of more respectable morning readings.

But my overnight readings are still not level. I never seem to return to the normal range before bed, and I have not yet managed to work out why this is. It could be a number of things, all related to my evening meal:

1. going to bed before my insulin has stopped working (meaning there is still some short-acting insulin to impact on my levels)
2. getting my ratio of insulin:carbs wrong for this meal
3. eating too much
4. my food still being in my system before bed.

Where 1. And 4. are concerned… This could be an issue. I tend to try and leave the recommended three hours after eating before I go to bed, but I know that short-acting insulin can work for longer than this. As for my food, my evening meals are often fairly carb heavy. I normally eat fairly low-fat meals with low GI ratings (brown rice/ pasta as a rule, and lots of veg and beans). I don’t yet understand the intricacies of the way insulin works with different kinds of food but I do know 2 things: low GI foods are absorbed slowly and fat slows down absorption too. Maybe my low GI dinners are not being covered correctly by my insulin dose. It may be that I need top up my ratio or even split my dose.

2. and 3. however I don’t know about… I don’t think I eat THAT much at dinner time. Often because I’ve over-corrected a hypo earlier in the evening and don’t have room (something I only did once this week, progress!). But it may well be that my understanding of portion size is completely skewed. I’ve got a lot of detective work to do!

The other achievement for this week was exercise. Only once, mind, but that’s better than nonce… On Thursday I walked 8km back from school and boy did it feel good! It had a massive impact on my blood sugars too: the next day,  I had 2 hypoes, one almost 24 hours later. Just goes to show how positive an impact it would have if it became a more regular part of my life.

On Friday I had my diabetic clinic with Dr. Kim at the Haeundae Paik Hospital. The appointment was good – we talked about the pump and he has given me the go-ahead, on the condition that I spend 7 days in hospital initially. While for some people this might be the definition of hell, for me this is just what I needed to hear. The pump is going to be hard work at first. If I can be in a controlled environment while my daily doses are calculated and tweaked I think it will give me the confidence to do it independently. At home, the thought wouldn’t really have crossed my mind, but here, so far away from the comfort blanket of England and the NHS, I can’t think of anything better. The only thing, which I, in my whirlwind of excitement didn’t consider, is the cost of 7 days as an in-patient. I may need to start saving now…

Finally this week I am gearing up for my appointment with Dr. Scheiner, about which I am still super excited but the nerves are starting to creep in. In preparation for the phone appointment I had to fill in a 13-page self-assessment form. It was thorough and this makes me hopeful.