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Sunday, January 16, 2011

Background story

I was diagnosed with type 1 diabetes on November 1, 2010. A few weeks later I found out that November is in fact Diabetes Awareness Month...

In January - February of 2010 I lost 15 pounds. Now, I had started to drink coffee (lots of coffee, encouraged by my roommate Colin) in the fall of 2009, and hockey season ran from October to March. So, I attributed the weight loss to a combination of the intense exercise for hockey, caffeine, and stress. I also woke up almost every night at least once or twice to use the bathroom beginning in mid-January. I play sports and stay hydrated, so this too seemed natural to me.

During the summer, no matter what I ate or when, I couldn't gain weight.  I've been around 185 pounds for the last 4 or 5 years, and suddenly I had somehow managed to get below 170 for the first time since high school. I thought, 'Wow, I must have a great metabolism... and without all that bulk I'll be faster than ever on the ice!' At the beginning of the summer I would wake up around 6:30 or 7 to go for a 1-1.5 mile run before work, then bike and lift weights after work. Running 3 days a week, lifting for 2 hours 4 times a week, and playing hockey once a week was not helping me gain any weight, and I felt that I was somehow losing even more weight! So about halfway through the summer, I decided to cut out the morning run. Around that time I determined that there was definitely something wrong physiologically and I knew exactly what it was - too much coffee! So, on a family vacation near the beginning of August, I cut out caffeine completely. That was a tough couple weeks! No caffeine and an irregular workout schedule left me feeling extremely groggy and irritable for almost the entire vacation.

When school started back up in September, I was committed to gaining back some weight. I wasn't feeling any better on the ice at the lower weight, and had always been pretty successful around 185, so I ate as much as I could at every meal and loaded up on the carbs between meals. I gained about 5-7 pounds, but for some reason I felt even worse on the ice. After a stride or two, my legs felt like they were made of concrete, and I couldn't hold my own in the corners or in front of the net. I spoke to my family about how much I was struggling and about my lack of a full night's sleep in almost a year. They had plenty of suggestions - don't drink water before bed, maybe you have mono, there could be a parasite in your intestines cannibalizing your protein... I knew it wasn't mono because I had tons of energy throughout the day and had none of the other symptoms. But, just to be safe, my father suggested a blood test.

I went to the school nurse one morning, had some blood drawn for 3 or 4 different tests and gave a urine sample. That afternoon she said that there was concern because the level of sugar in my urine was far above normal. I thought, 'well I had a recovery drink after hockey practice, so that could easily cause my urine to have too much sugar in it.' The nurse suggested returning on Monday to take a fasting blood test... great, I have to go to hockey practice without eating anything beforehand (not telling my coach, because I don't want him to think I have a medical problem if I don't) and then give blood - just how I want to start my week! The nurse said she would contact me by the afternoon to let me know the results.

I had a huge breakfast and lunch per usual, then got a phone call right before my 12:30 class.
-Hi is this Ben?
-Yes.
-Ben I have some bad news, it looks like you have diabeetus.
-(1. What the hell is diabeetUS? 2. Fuck.) Um, ok.
-We'd like you to come to the office right away to meet with a nurse who will tell you more about it.
-Ok, well I have class right now so can I come in after? (What the hell is wrong with me, I'd rather go to an INTRO spanish class than get healthy right now???)
-Sure, you can come in any time.
After my class I called my family and let them know what was going on. We all knew it was a possibility because of the symptoms, but none of us actually thought I had diabetes. I work out almost every day and try to avoid unhealthy foods. How could I have diabetes?
The next call was to my hockey coach, who I wanted to tell in person because we both knew that I wasn't playing to my potential. Unfortunately he couldn't meet in person, so I had to tell him over the phone. Basically I told him what I had just found out and that I might have to miss our team workout that evening, and he said that he would do anything to help.

At the doc's office I met with a nurse whose son had diabetes his whole life. She taught me how to check my blood sugar (527 mg/dl), how to give myself a shot (10 units of Humalog), what a hemoglobin A1C test is (12.8% - meaning my mean blood sugar for the previous 3 months was 373 mg/dl), and the difference between long and short acting insulin. She also had plenty more advice for me:
'The only time my son ever got into trouble was when he drank in college. If you drink too much, you can confuse a low blood sugar with drunkenness and have to go to the hospital." (Wonderful, I can't drink anymore! -not true)
'When you eat, be sure not to eat only a simple carb, if you have cereal or a banana, eat some peanut butter with it because the fat will make you digest it more slowly' (Great I can't eat any of my favorite foods anymore -not true)
'Don't take insulin before hockey or a workout because your blood sugar will go way too low' (not true)
'Try to eat at the same time every day to keep your blood sugar stable throughout the day' (not true)
I could go on and on about the things I learned in the first few days that were not true at all, but this nurse (Liana) was extremely nice and informative and was a great person to introduce me to life with diabetes.

That evening before dinner I started to feel sweaty, shaky, and dizzy. I checked my blood glucose (bg) before eating, and it was 95 (this is above normal for most people if they haven't eaten for a few hours - evidence that my body had been used to a super high bg for a long time). When I saw my teammates at dinner they wondered why I had missed the workout and I just told them that I had an appointment. I still woke up to use the bathroom that night, but I noticed that my sleep was much more sound than usual. The 5am wakeup for practice still wasn't easy. I ate my 1/2 banana and peanut butter and went to practice. Hockey was strange the first few times I played. I felt stronger and faster, but I was pushing my muscles much harder than I had in a long time, which left me pretty fatigued. I was extremely happy that I was finally making progress after struggling for so long.

We had a team meeting (more like meating) and video session that evening. I told the coach that I wanted to tell everyone at the meeting, so when we arrived, he said 'all right, I have a couple items to address before we get started...'
'FIRST, I have an extra dollar from a fine that was assessed last week and I'd like to know what we should do with it. Should we use it for the next fine or does the person want their money back?'
(Um, why is this the first item on the agenda? And why does it matter?)
'Next, DiMo has something he wants to say'
'Hey guys, as everyone knows I haven't been myself on the ice lately. I feel like I'm giving everything I've got and am getting no results. I've talked to a lot of you about how much I have been struggling lately, and...' (I'm sure some guys are thinking, Is he going to quit right now?? - No way, Jose) '... I just found out yesterday that I have diabetes. So please bear with me as I learn to manage it - I'll keep working my ass off, and you guys keep beating the shit out of me.'
'Thanks, DiMo. Ok, well now we have that problem figured out. Next item...'

4 comments:

  1. Hi Ben!

    My name is Reyna and I write Beta Buddies and my little guy, Joe, was diagnosed when he was three years old. He is now seven and he LOVES hockey. I am really looking forward to following your story.

    Are you going to start pumping soon? How has hockey been going since diagnosis?

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  2. Hi Reyna,

    Actually, your blog (along with a couple others) inspired me to start this one. After scouring the internet for anything combining hockey and diabetes, I ran across your site and I really thought it was awesome to see a young kid with D giving hockey a shot. (It has also been useful to read what you have written about trying to control it during/after hockey) I bet you know this already, but there are a few NHLers with type 1 - Toby Petersen, BJ Crombeen, and Nick Boynton are all playing now, and retired hall of famer Bobby Clarke has it.

    I am planning to start pumping soon and am very excited about it. I'm still deciding which pump (Animas vs Minimed) will be best. How has the Ping worked out for Joe (especially with hockey) so far?

    Hockey was pretty rough before being diagnosed and it was difficult to manage my bg during and after hockey for the first few weeks... for some reason it would always be way too high or way too low when I played. After being home from school during winter break and being able to experiment with when/how much insulin to take, I've learned how to manage pretty well during exercise, and lately I have been able to keep my bg between 140-200 during hockey for the most part.

    If you have any tips for transitioning to the pump, I'd love to hear them. And if there is any way I can help Joe out, with hockey or D or both or neither, I would be happy to.

    Happy blogging

    Ben

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  3. That is fantastic! On your numbers during hockey. We were doing ok with Joe's numbers during and after hockey...but I find he needs to go into practice or a game in the mid to high 200s to make it through without going low...(he will sometimes even drop like 200 points in 30 minutes)... He had a really bad low in game four on day one of a tournament this w/e. It was very difficult to watch him completely decompensate on the ice. He ultimately had to be pulled for the last 6 minutes of the game.

    The Ping Remote feature is great. You don't need to have direct access to your pump to bolus etc, which would be great with the pump and hockey pads etc. Will you wear your pump during play? Or are you going to take it off? Joe wears his...but he is playing against other seven and eight year olds; not the same intensity as you engage in for sure.

    How are you managing to keep such a great range of BGs while playing? I have tried decreasing his basal (continuous insulin on the pump)...that worked for a few weeks, but then he would have highs that I could not get down easily for hours. So, then I moved to "feeding". I would give him 5-10-15 grams of a free snack prior to play and during play depending on where his number is. Diabetes is one big experiment for sure.

    What position do you play?

    Great to meet you and have you seen any other type 1 hockey bloggers out there. You are the first one. Can you tell I am excited?!

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  4. Awesome story.Many Many than x for shearing Ur lovely & fantastic story .



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