Explaining Diabetes to the Short People

I have two nieces and two nephews, all of whom I love with all my heart.  My two nieces are 12 (Sarah) and 15 (Hannah) and my nephews are 4 (Logan) and 1 (Harris).  When I was diagnosed with Type 1 diabetes my eldest niece Hannah understood what it was and my younger niece Sarah learnt a lot about it and in fact did a project on diabetes at school.  I can talk to them about it and know that they understand.  It is harder however to explain to two little guys about what is wrong with their auntie.  The littlest one Harris is too young to understand or really even notice.  I know that Logan has seen me test my sugars and take insulin but I have never known how to explain to him what Type 1 diabetes is.  Enter the children's show Caillou.

On Monday evening after my workout I had an urgent text from my brother asking if I could come watch Logan.  Little Harris had fallen and split his lip and they needed to take him to emergency (he was okay in the end).  I rushed home, packed my supper that was cooking in the oven and drove straight over.  I sat down with Logan and he asked if we could watch some taped shows of Caillou together.  I put it on and sat down to eat.  Through the corner of his eye he watched me test my blood sugar and bolus insulin through my pump.  He did not say anything but I could see his little mind working overtime.  As I was thinking of how to explain what I was doing and why, a new episode of Caillou came on called "Emma's Extra Snacks".  It was about a little girl called Emma in Caillou's class who had Type 1 diabetes!!  I whispered to Logan that Auntie J (that's me) had the same disease as Emma.  He looked at me with amazement and we watched the show in silence together. 

The episode did a very good job of explaining Type 1 diabetes in a way that the short people can understand.  Emma had an insulin pump and had to eat extra snacks during the day to keep her blood sugar levels up.  The teacher explained that sometimes Emma did not have enough sugar in her blood which meant she needed to eat something and sometimes Emma had too much sugar in her blood which meant she had to take medicine from her insulin pump. When Caillou found out that Emma had diabetes he was very worried about her being sick and he thought that because she had a chronic disease she would be unable to do fun things like play on the playground and run with the other kids.  Emma explained to Caillou that she could do everything he could do, she just had to be sure to check her blood sugar levels many times a day and when they were low she explained that she felt dizzy and weak.  Once Caillou understood that Emma could manage her disease and that it was something she had to live with he relaxed and stopped worrying so much.

After the episode Logan and I chatted about it.  It went something like this:

Logan:  So Auntie sometimes you don't have enough sugar in your blood and sometimes you have too much?

Me:  Yes and depending on which one it is I either have to eat some sugar or take medicine through my insulin pump.

Logan:  And that makes you better forever?

Me:  Well not forever, it is something I have to do everyday and each time I eat.  

Logan:  Are you kind of like a robot now?

Me:  I guess you could say that I have robot parts.  They help to keep me well.

Logan:  Oh, well that makes me happy.

He then inspected my insulin pump and was fascinated with the fact it was attached to my stomach.  He lifted his shirt and looked at his tummy and told me that he does not have one attached to him and neither did his mommy or daddy.  He wanted to know if he would need one one day attached to his tummy.  My eyes filled with tears and I gave him a big hug and told him I hoped he never would need robot parts.

Wordless Wednesday

Kasper with his chicken exhausted after a day at doggie daycare.  Just makes me warm and fuzzy.

Sport Bra - Ultimate Diabetic Assistant

This afternoon while getting ready for my run it dawned on me how useful my sports bra is.  Not only does it hold the girls in place, but it is like a mini suitcase for all my diabetic needs while running!  Amazing what one can pack in there.  Today I had my I-Phone (for music and in case of emergency), insulin pump, tube of 10 glucose tabs, meter and a little baggie with test strips.  Works a charm! 

Two Weeks into Pumping

First of all, today is International Diabetes Day!  I am so very thankful to my fellow Canadian Dr. Banting for founding insulin.  Without this discovery I would not be here along with many others.  I am going to celebrate my hitting the gym tonight wearing blue and working up a good sweat.  To me this symbolizes what insulin enables me to do on a daily basis.

It has been two weeks since I starting pumping and I can sum it up in one short sentence.  I LOVE IT!  I really and truly love my pump and am so happy I made this decision.  Don't get me wrong, it has been frustrating and I will be the first to admit that my numbers have been all over the place (not sure what my current A1C will look like)...but it is improving each day and I have learned so much in the last couple of weeks about how my body utilizes the insulin I give it, when it needs more, when it needs less and how all my different types of exercise and foods affect me.  I had an idea when on needles, but a lot of the time you are just guessing how much insulin you have left in your system and things can go wrong quickly.

Some of the things I have learned.  I have dawn phenomenon in a big way.  I am working with my team to adjust my basal through the night and this is working.  The first day I woke up with a 16.0 I nearly had a bird.  Now my numbers are getting closer to what they should be after fasting all night.  I need significantly more insulin during the night!  My insulin to carb ratio's have also changed and this has helped with my post meal numbers.  I need more insulin at breakfast, a bit less at lunch and then less again for supper.  My team started me on a conservative basal rate during the day and that has increased as well.

Exercising has been most interesting to figure out.  I have found that being able to see how much insulin I have on board (IOB) is invaluable.  This has allowed me to adjust my plan according to what I will be doing.  So far I have had a lot of success in setting a temp basal decrease of 50% an hour before activity and then cancelling it the minute I finish.  This has prevented me, in the most part, from going low during my activity and then prevents the high afterwards.  After really intense activity I have even had to bolus a small amount to counter going high.  I have not run yet (due to some hip issues) and will be interested to see how I react next week when I resume running.  Swimming has gone very well and I was delighted to confirm for myself that it is in fact waterproof!  I was so nervous jumping in the pool for the first time, I was pretty convinced it was going to explode.  But it did not and I was fine :)

Other things I love.  Being able to dose my bolus's to my exact carbs. I have had less lows (although the ones I have had have been intense).  I have lost 5 pounds in two weeks due to not having to eat my way out of lows.  I like that.  I love being able to see my IOB, helps me feel more confident when exercising or when going to bed at night.  I really love not injecting myself all day long, it is wonderful.  The infusions sets pinch when I insert them but it is not bad at all.  I love that my pump has a clock on it and the date, instant watch!  I have had quite a few strangers notice my pump and have asked me about it, particularly at the pool.  I like having the chance to educate and explain.  In fact I am working on a post that explains what an insulin pump does and is.  I realize that not many people know and there are many misconceptions out there, number one being that the pump tests my sugars for me and automatically gives me insulin.  This is not the case at all.  In fact I have found myself testing a lot more. 

All in all I am very pleased and looking forward to learning more and more.

Happy International Diabetes Day to you all :)

My Pump and I Are Attached!

It's official, I am now a Type 1 diabetic on an insulin pump and so far it is fantastic.  I am only three days in and although it is a huge learning curve and has been frustrating at times, I already know that I have made the right decision.

Let me back up a week.  Last Thursday I attended my diabetic clinic as eager as a kid on their first day of school.  I had the big bag of supplies, manuals, workbooks as well as the pump itself in tow ready for my pre-pump class.  There was one other man who would be doing the pump start with me and we hit it off right away.  He has been diabetic for 40 years and had made the decision to start the pump to help him get better control.  The nurse went over some basic diabetic stuff and then we got right into it.  We made some dummy programs on our pumps and played with all the settings.  We practiced loading the cartridge with saline and getting the pump ready to use.  We used dummy stomachs to do our site insertions.  The plan was for us both to leave the clinic by noon pumping saline solution.  Before I knew it we were ready to insert our first sites.  This was the moment I got a bit scared...okay like really scared.  I have always had a fear of needles and although I had been injecting myself for over a year, the needle in the insertion set looked very daunting, long and sharp.  I watched my fellow new pumper insert his with no problem and knew I had to just suck it up.  I got the set ready against my tummy and placed my fingers on the trigger (for those who don't know it inserts itself automatically when you press the sides of the insertion set).  The nurse gave me a big smile, counted to three and...nothing.  I could not do it.  She looked me in the eye and told me to just do it.  So finally after counting to three another four times I took a big deep breath and pushed.  Clunk.  In it went and I hardly felt a thing!  Just a little pinch. The nurse must have thought I was totally bonkers when I let out a big yahoo and kind of punched the air with my fist.  Yeah, I did that.  After inserting the sites we hooked up to our pumps and they shipped us off pumping saline with instructions to do everything with the pump on to get used to the feeling of having it attached.  I left the clinic that day feeling totally elated.  It felt strange to have this little beeper sized thing on my hip but I felt super excited about the whole thing (and inside slightly terrified).

For the next five days I had my insulin pump on me and practiced bolusing saline and using the remote meter (which is totally awesome by the way).  Sleeping with it was easier than I expected, I just clipped it to the back of my undies and slept well.  I went to spin class with it and tried out my Spibelt which worked a charm.  I ran with it, went for a swim where I practiced hooking and unhooking it) and did my strength workouts with no issue with comfort.  I did a site change on the Saturday - it took me a long time but I am sure it will be second nature soon.

On Tuesday morning (Oct. 30/12) I returned to the clinic with a vial of insulin and my supplies.  I was ready to rock n' roll.  A different nurse spent the morning with us and she was fantastic as she is a pumper herself.  We spent the first hour putting all of our settings in with basal rates, insulin to carb ratios and sensitivity factors.  The doctor had started me on a conservative basal rate to work from.  They lent each of us a pump to play with and we practiced bolusing from the remote meter.  We were ready to begin with insulin!  The night before I had only taken half my dose of lantus in order that I would be ready to start.  I changed my site, filled my cartridge, prepped the pump and hooked up. That was it, I was pumping insulin!  I left the clinic with instructions to keep track of all my sugars, carbs eaten and amounts bolused.  They warned me that I would experience some highs as my basal rate was very conservative and could expect to be frustrated.  I was to call the clinic that afternoon and then twice a day for the next three or four days to report all of my data in order that we could get my rates adjusted.  I left the clinic feeling very excited and extremely vulnerable.

My day with the pump felt so weird.  It felt very strange not to i

In order to avoid this post getting to book length, I will post some more stories over the next few days with what has been happening since starting on insulin through the pump.  I feel a bit like a science experiment!  One thing I was shocked at was how emotional going "live" on insulin was.  It brought back the memories of the day I was diagnosed and gave myself my first injection.  It made me realize how far I have come in the last 13 months, how much I have learned and how I have managed so far.  It also made me feel so sad and angry at the same time.  Although I am very excited to have this opportunity to be on the insulin pump, it is just really blows that I have to do this.  It really struck home for me that this disease is here to stay.  The man who took the pump-start with me found it very emotional.  He said that even 40 years in sometimes it just hits him how hard it is, how frustrating and at times how it all feels very unfair.

I look at my pump as an opportunity to learn more about managing this disease and hopefully down the road help others.  I now need a name for my pump as she is going to be literally attached to my hip :)

Wordless Wednesday - New Go Faster Running Shoes

Living Alone with Type 1 Diabetes

I have been asked to take part in a panel this weekend for the Kids 'n' Us Conference (link here).  There will be three of us on the panel and we will be speaking with teenage girls about various topics surrounding living with Type 1 diabetes.  Some of the topics include how to talk to a boyfriend about having diabetes, intimacy, how to tell a prospective employer you have diabetes, looking for jobs that have good health plans, drinking alcohol and living alone, to name a few.  They asked what topics I felt comfortable talking about and while I am comfortable talking about all of them, one that I can talk quite easily about is living alone with Type 1 diabetes.

I have lived alone for the last three years (not counting my two furry friends) and have never worried about being on my own. Things changed when I was diagnosed.  All of a sudden I had a reason to fear being alone, particularly at night.  I was scared of going low in the night and not having someone there to help me or wake me up if I was in trouble.  Pretty much anything negative about being on my own ran through my head.  I have always been a very independent, strong and somewhat stubborn (what? who said that?) women and all of a sudden I felt weak and overwhelmed.  My boyfriend stayed with me for the first little bit while I got used to my new routine.  I still remember the first night I spent alone, I was terrified.  Looking back I do laugh a bit at how paranoid I was.  I set my alarm for every two hours to check my sugars and to make sure all was right.  It was exhausting and I knew that I had to come up with a living alone plan.

Fast forward a year and I have the same routine each evening to ensure that I am safe.  My boyfriend does stay two or three times a week which always put me at ease, but I am well prepared for the evenings I spend alone.  For starters I make sure that I have a phone near me in case I needed to call 911 at anytime.  In my bedside drawer I keep juice boxes, glucose tabs and granola bars.  Each night before bed I check my blood sugar to assess whether I need to have a bedtime snack.  Due to my exercise regime I often find I am lower in the evening so often a banana before bed does the trick.  I no longer set an alarm to wake me in the night, however guaranteed I always wake up to pee at least once so I check then.  I find that having all of this in place makes me feel safe and means I am ready to treat a low at a hands reach during the night.  It has come in handy more than once!  I have only had one occurrence where I went low in the night and had nothing at hand to help.  It scared the bejeezus out of me.  I literally had to crawl downstairs sweating and close to blacking out.  I made it to the kitchen and downed juice and lay on the floor until my sugars came back into range.  Looking back I should have called someone but in that blurred state I was not thinking straight.  Since then I do my best to avoid that situation!

I hope that on Saturday speaking about my experiences of living alone will help reassure these young adults that they don't have to be frightened and can do it!  Just takes a bit more preparation.  I am looking forward to the conference and excited to be involved. I shall report back as to how it went.  I am sure I will learn a lot from these young ladies.