Guesstures

Quick post today. Our family was playing a board game last week called Guesstures. Fun game, it's charades with a slight twist. You pick four cards that you then have to act out for your partner before the timer runs out. Arden was playing on Kelly's team and I was on Cole's. At one point Arden chose four cards, she examined them and then asked, "can I use something from my bag to help me act out this word?". We said, "sure!".

I set the timer and Arden began acting out her first word, Kelly guessed it correctly and Arden moved to the next card. Without hesitation, Arden picked up her MultiClix lance, pushed it to her finger and struck the button. She squeezed her finger, put the lance down and pointed to the drop of blood. Kelly said, "blood", Arden smiled and moved on to the next clue. Not wanting to waste the blood we tested her BG and then kept playing.

I couldn't help but to think that while diabetes certainly has thousands of detracting effects on one's life... It sure does teach you to be fearless!

Cured

I remember the two saddest days of my life since Arden's diagnosis very vividly. They came at a very inopportune time. It was six months after Arden's diagnosis which was two months after I fooled myself into thinking that I had mastered type I diabetes. These days began strangely because Arden's blood sugar was eerily steady and a little on the low side. After breakfast her BG got significant low, almost as if she didn't need any insulin. She ate more to stop the BG fall. The food worked but there was no spike at all, which of course was strange. In the moments after I got her BG stabilized I thought, "maybe they were wrong and she doesn't have diabetes".

Having that thought, was the beginning of the longest, saddest two days that I've lived through since Arden's diagnosis. I knew enough about type I to be sure that I was wrong but everything that was happening said that the insulin wasn't necessary and it certainly seemed like she wasn't diabetic anymore. By the end of that day I wasn't giving injections for meals and I had to skip her pre-bedtime Levemir. I didn't sleep much that night, I was waiting up and testing. Waiting because I was sure that her BG was going to suddenly rise - but it never did. It just stayed between 90 and 107 all night.

This trend lasted through the next morning and then I did something that I knew I shouldn't, but had to do. I needed to tell someone that I thought Arden didn't have diabetes. I called my friend Adam who is also Arden's pediatrician. When Adam got on the phone I said something that I still remember to this day, "I'm about to say something that I know is wrong but I have to say it... I need you to set me straight and then I'll get off of the phone". Bewildered he asked me to proceed.

"Arden doesn't have diabetes. She hasn't needed insulin in over a day... is it possible that she was misdiagnosed?"

I knew that she was most likely experiencing a honeymoon period but I needed someone to tell me. With each moment that passed, I was convincing myself a little more that Arden didn't have diabetes. After a long pause Adam said, "no, she was not misdiagnosed, this is a honeymoon period... Arden has diabetes".

I thanked him, there was some awkward silence and then we said goodbye. I went into the bathroom and cried. The remainder of the day was emotionally excruciating, it felt like a cruel combination of every bad day that I had ever lived through.  Later that afternoon we ate dinner and Arden's blood glucose jumped to over 400. I actually felt better when it climbed so far, so fast. 

Today, after so many years of living with type I diabetes, I have seen countless anomalous days. Highs, lows, insulin resistance, sudden drops, more unexpected stuff then I could have ever imagined. I'll never know for sure what happened over those two days. What I can tell you for sure is that it's happened many times since then, including yesterday. Never again to the degree of those days (not needing any insulin) but there have been days when Arden only gets 15% of the insulin that she normally does and her BG never goes above 120.

Last night as we got ready for bed Arden's BG began to jump and then drop, I could see it on her DexCom and finger sticks confirmed what the CGM was saying. Arden's BG was 72 and then 125, then 93 and then 160. It was rolling up and down like a small boat on a very large ocean - this went on all night. The next morning things seemed to be back to normal but sometime around noon they went right back into that tiny boat. Lunch required much less insulin then we thought and then her BG hovered between 70 and 96 all afternoon. Never wanting to waste a day that Arden doesn't need insulin we went to dinner at the Hot Wok Cafe for Chinese. It was there as we looked over the menu that I did something that I've never done before...

I wrote this post to show how something that once seemed so terrible will one day feel very different. Today, we don't blink an eye when Arden doesn't need much insulin for a day or so. We refer to those days and their events with one word, "cured". Now when the cured days come I don't dream of a misdiagnosis or call Adam and I definitely don't go into a bathroom and cry. I just manage them as best that I can and get Arden a nice meal with a ton of carbs.

In my next blog post, I'll tell you how badly our meal at the Hot Wok Cafe went... I may call that post, 'Whisper Down the Lane' or perhaps 'Confusion at the Hot Wok Cafe'.

The lowest A1c ever

Yesterday was Arden's quarterly endo appointment and it could not have gone any better! At her last appointment her A1c was in range but a bit higher then usual, though still at the high end of acceptable for her age. Arden's A1c is always very stable and in range but never as good as it could be. Our endo likes that it's steady, I am usually unhappy with the number and trying to make it lower.

I don't know about your endo's office but Arden's does her A1c test on site. Today, I was just too on edge to wait for the nurse to bring the news, so I snuck back into the lab just as the test was finishing...

10, 9 ,8, it counted down, 7, 6, 5, I actually said, "c'mon be lower", 3, 2, 1... Test complete. It wasn't just lower then last time, it was .7 lower! Almost a full point! I held in my excitement and made my way back to the exam room (where Arden was blowing up a sterile glove for our now traditional game of VolleyGlove). I told her how far her A1c had fallen, she smiled coyly and offered a high five or three. Then we volleyed that glove like it was our first time.

The NP came in a few minutes later and she began asking the standard questions but I just couldn't wait. I said, "did you see her A1c yet?", she replied, "no". I responded, "Well I have and it's amazing!".

She asked me what it was (I don't share Arden's exact A1c here) when I told her she began clicking furiously on Arden's file and found a list of past test results.

"I thought so" she said... "lowest EVER!", she congratulated Arden and then me. I found myself thinking that my smile must look ridiculous because my face felt like it was about to break. As soon as we got into the car I called Kelly to share the great news and we celebrated all over again.

It's ten hours later and I'm still as excited as I was in that exam room. Even when things are going well with diabetes it can still feel as if they aren't. Yesterday was a much needed and well deserved chance to celebrate and feel accomplished. I hope everyone gets a day like this very soon, it was reinvigorating.

Switching from MDI to an insulin pump

This post is in response to the question that Melissa posed on 'Ask Me Anything'.

Hi Scott,

I was wondering how you felt when you got Arden's pump. Alison has been doing MDI since July 2010 and we just got her first pump yesterday.

I have to admit that I was really excited when the girls and I opened the box up. The little ones were excited to see the unit power up and hear the sounds it made and it was a really positive experience.

Once both girls were asleep in their beds, I took another quick look in the box. I was overcome with tears. I felt this enormous weight and sadness, almost like I did when we were coming to grips with Alison's diagnosis.

Just thought maybe others could share how they felt (excited, nervous, sad) about the changes in their child's lives. - Melissa

To answer your question simply... I was nervous beyond compare when we made the move to pumping. In my opinion switching brings up a lot of those old diagnosis feelings becasue it again challenges you to learn something foreign and learn it quick. That should be the definition of pressure, "figure this out or here's the list of bad things that'll happen to your child".

The long answer is this... In a few days we'll be celebrating Arden's third anniversary with her OmniPod insulin pump. I can remember getting more and more nervous as her pump start appointment approached. On the way home from the endo's office that day we stopped for lunch and I thought that I was going to cry right at the restaurant table. Switching from MDI to a pump instantly reduced me from a seasoned type I parent to a rookie. In that moment everything felt new and I was confusing myself with every move that I made. Basal, bolus, cannula... why did they have to rename stuff? What was wrong with long acting and short?

I just about fell apart... Then I looked over at Arden and she didn't care that everything was new. She was beaming, thrilled that the shots had ended... that's all she knew or cared about. I figured that if she could do it then so could I. So I took a deep breath and thought to myself, "bolus is the shot, basal is the long acting insulin, this is going to help her... lower A1c, no more shots... bolus is the shot - I can do this." A week later I felt like a pro again (I wasn't but at least I wasn't scared).

Melissa, I've been overwhelmed by a great many diabetes related moments. My best advice is that we have to go through these things so we can become the people that our children need. The first few years and the changes that come with them are our diabetes education. No one is going to be able to fully explain this disease to anyone else, we all have to live it to learn it, we have to suffer with it to master it.

One night as I was putting Arden to bed she asked me, "what am I going to do when I go to college", referring to overnight management. Poor kid, she's seven years old and she is concerned that she won't be able to be safe ten years from now. After I explained that by then she'd have a system just like mine, I went into the next room and cried. The trick is that I left my sadness in that room when I was finished. I choose to let those moments strengthen me. I considered them a hurdle crossed instead of another chink in my armor. I may be fooling myself but if I am... it's working.

Living this life demands that we get scared and even cry sometimes but always push on...

Congratulations on moving your little girl to insulin pumping, I hope and expect that it will be a wonderful addition to both of your lives! I know that my stress decreased significantly when the OmniPod came into our lives.

If anyone would like to share how changes in their child's care has affected them, please post your remarks after Melissa's at this link.

Great thanks to Melissa for sharing!

Arden's Day is the Wego Health 2011 Health Activist Award winner!

So excited... I'll post more later when my heart stops beating so fast.

What a wonderful surprise it was to be chosen from among so many deserving and wonderfully written health blogs. A day after learning that I won WEGO Health's 2011 Health Activist Award in the 'Advocating for Another' category, well,  I'm still a bit in shock. 

WEGO Health houses an amazing collection of communities and blogs about a sweeping range of medical issues. It's members offer advice and support to countless people that need it. If you or someone that you know is living with a medical condition and looking for community, I strongly suggest that you click on this link and see if there is a group tailored to your specific need - I bet that there is.

I want to thank WEGO, the independent judges and the type I diabetes community for embracing what I'm trying to do with this website. It was a genuine honor to be named as the winner in such a broad and powerful community of people. I'm proud of this site and the words that you'll find on it. Moreover, I'm happy beyond words that it helps people. Thank you all very much!