JDRF Type 1 Talk

On World Diabetes Day, November 14, 2010, I headed out to the local JDRF chapter office. They were hosting a Type 1 Talk meeting, and I wanted to check it out.  I wasn’t really sure what to expect.  I’m not sure if that is because I’m chronically behind on blog & news reading, or if JDRF didn’t know the best way to promote it and get more people involved.

We had a group of about 12-15 people there, and it was good to meet some new people living around here that live with type 1.  I also enjoyed meeting some of the local JDRF office staff.

There were some technical difficulties during the first 20 minutes of the broadcast, but they got it all figured out in time to catch most of the session.  One thing I did catch in the first couple minutes, which made it all worthwhile, was someone saying “We are here to recognize World Diabetes Day.”

That was a huge statement, and I was really glad to see the JDRF organization at least acknowledging the day.  World Diabetes Day has received very little attention here in the United States, and I am hoping that this is a step in the right direction.  Maybe next year they will help promote it!

Once all of the wrinkles were fixed with the computer, we got to listen to a discussion panel answer questions and share their thoughts on a few topics.  On the panel was Kerri Sparling (Super Advocate and PWD), Aaron Kowalski (JDRF’s Assistant VP for Treatment Therapies), Lorraine
Stiehl (JDRF’s National Chair of Grassroots Advocacy), Dick Insel (JDRF’s Chief Scientific Officer), and Rachel Steinhardt (JDRF’s National Director of Marketing and Communications).

I got a lot from the discussion, but truth be told I would have tuned in just to cheer for Kerri (insert cheesy, proud-brother, ear-to-ear grin here).  She did such a great job of representing for us adults with type 1 diabetes, and the diabetes online community.  I was especially proud when she mentioned the “huge emotional burden of living with diabetes”, something that is in dire need of attention.  Thank you Kerri!

Another point that really stuck with me was Aaron talking about a teenage girl who spent three days in a hospital for one of the artificial pancreas studies.  This young lady said “that was the best vacation I’ve ever had!” and all I could think of is how much that says about life with diabetes when we would gladly choose to be confined to a hospital with a bunch of “stuff” hooked to us, just to not worry about our blood sugars.

Think about that for a minute.

Kerri’s closing statement was perfect:

“Just because we make diabetes look easy, it’s not.  And just because we
make it seem like it’s something we can live with and we can have this
big, full life – which we can, but at the same time, it can be very
challenging.  I think the one thing that I want to leave us with is that
just because we don’t look sick, doesn’t mean we don’t still deserve a
cure.” — Kerri Sparling, 2010


Guest Posting at The Bad Blog Today

NinjabeticScreenshotToday I am guest posting over at Ninjabetic.com.  I am honored to have been asked by George to post while he has been on vacation this week.

George and I have a special relationship, which I think we do a pretty good job of sharing with everyone.  We are damn goofy, and love every second of it.

He is one of those guys that is a real treat to hang out with in real life.  If you think he’s funny online, multiply that by 10 in real life.

We are all very blessed to have him in our lives, online or in real life, or if you’re REALLY lucky, both.

Ninjabetic Weekend – Saturday – The Celebration

I’ve still got more to say about my time with George, his wonderful family, and all of the folks that came in from out of town for his celebration.

George’s family worked together like a well rehearsed orchestra to help him put together a party to celebrate 20 years of living with diabetes. Living with diabetes is hard, and we need to recognize all of that hard work.  Celebrate your day, as George did, and be proud of all you’ve done.

In addition to bringing together more than 100 people for this party, George put together a really moving presentation.  He struck the perfect balance between serious and silly, talked about all of the support he found in the online community, and talked about how the abundant love and support that he found changed his life with diabetes.

Near the end of his presentation, George asked everyone in the room living with diabetes to stand up, say their name, and then how long they have lived with diabetes.  He said “I want everyone to see that we can make it.  We can work together and we can make it.”

Twenty years, thirty years, two years, eight years, ten years, one year, seven years, three years, seventeen years, thirteen years, twenty-six years, twenty-four years, thirty-two years, seven years, three years,
one year.

Suzanne, Jaimie, Melissa, & George

Sara, Dayle & Chris, Lee Ann

Two years ago, for World Diabetes Day, George wrote an incredible song about living with diabetes.  He wasn’t going to sing the song at the celebration.  George is humble, and he worried that it would be too self-centered.   His friend Tom convinced him to sing it, saying it was no longer his song, that he wrote it for everyone – it’s their song now.  I’m so glad he decided to sing it.

Not a dry eye in the whole damn room.  Thank goodness I was hiding behind my camera.

The whole thing felt so right.  The presentation. The song. The gathering. It was all perfect.

Picture of George & his son singing "Not By Choice"

* “Not By Choice” is available on iTunes if you would like to buy it

Thanks to Scott Strange & G. Baumgartel

Disclaimer #1: The fact that we even have to talk about this is another reminder of how crude our therapy is.  Don’t get me wrong – I’m thankful for every bit of therapy we have (a century ago we’d all be dead), but it’s still pretty damn barbaric.

Jabbing a needle in fast (usually) hurts much less than inserting it slowly.  I have known this, logically, for as long as I can remember.  But that didn’t help me and my fine motor skills actually jab the needle in quickly.

I had never been able to get past some subconscious fear that I would “hit” something important, which would hurt like hell and surely kill me.  Silly, I know, but …?

When George was here, Scott Strange & Chris Bishop drove up to experience some of George’s magical personality.  At breakfast on Sunday I watched Dr. Strange whip out his Symlin pen, jab it in his leg, and before I could say “ouch!” he was done!

I was awestruck, and a bit jealous.  Every time I take my Symlin it is always some huge ordeal that takes me forever, hurts (because I’m a “slow poke”), and often times justifies me just skipping it.  I thought “damn!  I wish I could do that!”

Fast forward a few weeks.  Rachel Baumgartel and her husband, who lives with type 1, stopped through Minneapolis while on vacation.  We got together for a brief visit before they took off again.  We talked about pumping versus multiple daily injections, as well as CGM’s and blogging about diabetes.

One of the things that Mr. Baumgartel said that stuck with me is “I just don’t care”.  We were talking about how his Lantus shot stings — the actual insulin stings as he’s injecting it.  But he doesn’t care.  Which is a good point – it’s not like he can not take it just because it stings a bit.  And all things relative, does it really hurt bad enough to make a big deal out of?

So I think about Scott & G each time I bravely jab my Symlin pen in, and I thank them both for helping me find the courage to be strong and push through my fears.


Disclaimer #2: Sometimes, even when I jab the needle in, it hurts like crazy. But I don’t care. 

My Magic Number

200My magic number is 200 mg/dl and above.

When my blood sugar is 200 mg/dl or higher, I fight some seriously strong cravings.  This is no new issue for me, but I still haven’t figured it out, or how to beat it.

These are no ordinary boredom, sleepy, munchy, emotionally upset cravings.  These are the high blood sugar cravings!  All of my usual tricks (drink water, chew gum, do a little exercise) are powerless against these cravings.

Honestly, I often end up caving in, taking more insulin (which is WAY too slow to help anyway), and satisfy my craving.  I feel a bit ashamed to admit that, but the truth is what it is.

I don’t understand why this happens, and would love for anybody to educate me.

My friend Chrissie (in Belgium) once said to me “fix the BG and you fix the hunger”.  She is so wise!  And it is true!  But so damn hard to do.

Try as I do, I see 200 mg/dl or higher way too often.  Food choices, timing, miscalculations, sickness, and all of the other things that we don’t know about, all work their mischeif on my blood sugar.  It is often very hard to just “fix it”, especially with how slow our “rapid” acting insulins are.

I think that the battle is one of time.  If I can fight the cravings for long enough to get my blood sugar down, then the craving leaves!  But there are times where my blood sugar is not minding its manners, and seems stuck, for hours.  How can a person possibly fight the cravings for so long?  It takes every ounce of mental strength, and some days there’s just not enough strength available.

Does anyone know why this happens?  How do you cope with it?

I’m sleeping GREAT!!

A while back I posted about going in for a sleep study.  I recently went in for my follow up visit to get the results.

I was floored to hear that I was waking myself up almost 47 times per hour (46.9 to be exact), and would stop breathing altogether for up to 54 seconds at a time.  I was getting a total of 27 minutes of restful sleep each night, which is about 6% of my total sleep.  The normal person gets about 25% total sleep time in the restful stage.   No wonder I often felt tired!

They talked about it being a combination of upper airway and lower airway problems, and recommended CPAP therapy.  If it meant feeling better I was all for it.  I realized that I may have been living at half-speed for many years now, and was anxious to get a taste of the good life.

Another day later I was sent home with a CPAP machine and accessories.  I strapped it on that very same night.  While it is weird sleeping with a contraption on your face, I felt a difference the very next day.  It is getting better and better every night.

How does this relate to diabetes?

Everything is whacko when I am tired.  I see this in a few key ways that affect my diabetes management efforts.

  • When I’m tired I want to eat, eat, eat.  Junk food in particular.
  • When I’m tired I am much less resilient and am easily swayed to make unhealthy decisions.
  • I am much less active when tired.  Duh!
  • My state of mind is distracted, depressed, and not diabetes focused.

And those are just some of the things that come to mind.  In a nutshell, I’m a mess.

I’m glad to be sleeping better, and anxious to get my CPAP machine dialed in and calibrated for my needs (which calls for another sleep study next week).

Thank you to all that have offered information and support – I appreciate it!

What else do they do?

Bottle and Box of KetostixKetones.

We know that ketones are bad, and usually a sign that something has gone wrong with your insulin delivery.

However, there are times where the normal metabolism processes will also cause ketones, even when your insulin delivery is just fine.

When your cells can’t get the energy they need through available glucose in your bloodstream, your body will start to break down fatty acids. A by-product of this process is ketones. I’m not a doctor, or even a medical professional, so there are many more accurate descriptions of the process available. My basic understanding for the purpose of this post is that when the body has to turn to fat stores for it’s energy, you will have some ketones.

Yesterday was a basketball day for me (where I play ball for about 2 hours over lunchtime). I had eaten a bagel with cream cheese and a glazed doughnut for breakfast. I also had two bottles of juice during basketball to keep my bloodsugar up. My bloodsugar hovered between 74 at it’s lowest, and 107 at it’s highest (pretty damn good!). When I left the gym after showering and dressing, I tested 105. I felt good. I worked really hard during basketball and had an excellent workout. I was however very dehydrated – even before basketball. This is thanks in part to my official addiction to Diet Coke (caffeinated – a diuretic), and also the fact that I had not taken in much water in the past few days. I did drink 32oz of water during basketball, but I’m sure it did not “equal out”. I sweat like a stuffed pig in a sauna, and probably lost 64oz of water through that alone.

I got back to work and felt really really worn out. I naturally just thought that it was because I worked really hard. I really pushed it today, much more than usual. So, of course I should feel a bit spent. It made sense. I was also immediately completely bombarded by work stuff – more so than usual after being away from my luxurious cube for a couple hours.

About 30 minutes later my muscles felt “funny”, and my blood sugar had spiked up to 247 (with no food!!)! I had suspicions at that point that I was spilling ketones like a two year old using a “grown up cup”.

I was again distracted by work stuff, and would you believe I totally forgot to correct for that 247?! It was another hour before it hit me that I had forgotten to take a correction bolus – I did another test to get an accurate reading, and by this time was up to 268. I corrected for that, found a ketostix and proceeded to the bathroom.

Remember the dehydration thing? Yeah.

I managed to produce a sample and the ketostix immediately turned a dark purple. Large ketones.

It’s now 4:00pm. My breakfast was at around 9:00am, and the two juices I had were between 11:30am & 12:30pm. With basketball usually burning an insane amount of calories (2000+, I have worn my heart rate monitor a time or two), and me not having eaten very many calories, it’s no wonder that my body was burning fat stores to survive. That’s actually the point of all the exercise isn’t it (well, that & to get the heart pumping)?

The issue with the presence of ketones is it makes you a bit more resistant to insulin. That’s why my blood sugar was rising. If I would have known about the ketones I could have increased my insulin to balance the resistance. I now also need to flush the ketones out (lots of drinking water & peeing), and get my body to stop producing them by feeding it (so it stops burning fat for energy).

It’s manageable, and information is the key. By (my) suppertime later that evening (7 or 8 o’clock) I was back down to 84 and managing just fine. Still working to flush the ketones, but blood sugar control was doing fine.

But I was totally & completely wiped out. In part because I really exerted myself at basketball, and in part from running high that afternoon, but I’m also convinced that all those ketones in my system also contributed to my exhaustion. I know that they can upset the acid balance of your chemistry, which can’t be good. But what else do they do? How do ketones interact with your body? What trouble do they cause? Why do they make my muscles feel funny? What would happen if you spent an extended period of time with ketones in your system – managing blood sugars with more insulin?

I believe that a non-diabetic person can deal with them a little better because their pancreas will automatically match their higher insulin needs (ketones make them resistant too – but their pancreas just creates more insulin). But, don’t they still deal with needing to flush them out of their system, and their acid balance should be thrown out of balance too right? How about when the Atkins diet was all the rage, and people were using ketostix to see if their diet was working or not – didn’t they feel crappy with high ketones? Or is it different for a non-diabetic? Does their body do something besides the increased insulin to deal with them?

What else do ketones do? That is the question of the day.

Update on Latest Endo Appointment

stethoscope-29243_640As expected, my A1C was higher than I’m comfortable with – although not as high as I expected it to be. The result was 9.1, down from 9.2 three months ago. Faithful readers will remember that for my last visit in November, I thought I had been doing really well, and was caught off guard with that 9.2 A1C result. It really messed me up.

I spent the entire three plus months since then fighting to pull out of the tailspin I went into as a result of that surprise.

I actually expected this A1C to be higher than the last one, so I was a bit relieved to see that it was not as bad as I thought.

Everything else was pretty good:

Blood Pressure – 110/64
Kidney – 100% normal
Cholesterol – Total 125, LDL 82 (looking to be below 80) and HDL 32 (looking to be higher than 40)
Feet – no detectable neuropathy

The cholesterol is ever so slightly higher (LDL) and lower (HDL) than desired, so he’s upping my Lipitor a bit.

He also referred me to a dietitian. I dread it. I know that diet is my weak spot, and I really do want to change, but how the heck do you change these (poor) eating habits you’ve had your whole life?! I also have to do some legwork to find out if this particular dietitian is considered “in network” with my insurance.

More to come…

Crisis (Danger & Opportunity)

This is the kanji symbol for crisis. It is composed of two symbols, one is “danger”, the other is “opportunity”. Danger & Opportunity.

The kanji symbol for crisis

This symbol & translation touch me in a certain way. Diabetes is definitely a crisis, and can be very dangerous. Sometimes, everything seems like a crisis. Just getting through another day of dealing with everything can be a crisis. At the same time, it is an opportunity, that when leveraged positively, can have a big positive impact on your life.