Please Find one of our own!

Yesterday morning I woke up to see my Facebook newsfeed filled with request to help search for a woman with diabetes who was now missing.  Under normal circumstances most people would not be concerned if a loved one headed off for some “space” but as with everything else, diabetes changes this.  Mari Ruddy is an active member of the diabetes online community, the director of TeamWILD and was recently featured in an interview withTuDiabetes.  She has now been missing from her St. Paul MN home since June 11th. If you live in this area, please help by being on the look out for one of our own.

This is the release from the Diabetes Advocates group….

In case you are not aware of this situation, a very dear diabetes advocate, Mari Ruddy has been missing since 1 pm yesterday.

Mari did a fabulous video chat for us here at TuD a few weeks ago (http://www.tudiabetes.org/video/tudiabetes-live-interview-with-mari-ruddy-founder-and-director-of).

The following web site (http://www.findmariruddy.com/) contains the info below:

PLEASE share wherever you can!

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Mari was last seen at her apartment in the St. Anthony Park neighborhood of Saint Paul, MN around 1 p.m. on 6/11/13. Mari has type-1 diabetes and wears an insulin pump. Her phone and other belongings were found in her home. She left in her car, a dark green late 90s/early 00 model Honda Civic, license plate #102-LNC, with a bike rack on top and a red Namaste bumper sticker.

Mari’s family fears that she may try to harm herself and appreciate any help locals can provide in search efforts. She may have gone to a place with spiritual significance, beauty or seclusion. Please contact Mollee at 952-406-0081 to volunteer. You can also join the search effort by connecting with this Facebook group:https://www.facebook.com/groups/172257126284014/?notif_t=group_r2j

If you have any information please contact local police first, then email us atinfo@findmariruddy.com.

Diabetes and Exercise...What I learned last week

In the past few months my son has really gotten into body building.  I am not talking on the competitive Mr. Universe scale of things, but simply getting fit, building muscles and looking "buff".  He was following the George St. Pierre workouts and is currently working out to the "Body Beast". I am excited to see him taking an interest in his health.  I am impressed to see the muscle tone and the dedication that he is giving these efforts but it is also presenting new challenges to us--how to manage diabetes and exercise!

I was therefore overjoyed when I saw a poster from my Animas rep stating that she would be bringing two people into our area to speak on just that topic! I was dying for my son to actually attend and learn himself.  He was equally sure that I could go and bring him home the Coles Notes version!  In the end, he won with the valid excuse of having to study for final exams.

The night's two speakers were Sebastien Sasseville and Heather Buckle. Both of these people are extremely athletic and living with Type 1 diabetes.  You may know Sebastien from his mountain climbing expedition to the top of Mount Everest, his recent run across the Sahara, or perhaps his many IronMan races. His motivational talk incorporated how important his diagnosis of diabetes has been in his personal growth as well as to his development as an athlete.

He explained how vital it was to have dreams and actually work towards them! With or without diabetes, it is important that we refuse to be still and we continue to evolve at all times. He refers to diabetes as a houseguest that is now your roommate and how you must learn to live with him/her in order to get the most out of your life.  He reminded his audience living with diabetes that it is not about the A1c, its about the journey to get there.  As a personal life coach, it was great to hear him reiterate some of the same things that I had recently talked about in my "Normal is Just a Setting on the Dryer" session!

Sebastien also spoke a bit about his control and how he handled his diabetes care. I was surprised (although I should have intuitively known this) that the same exercise at different times of the day has to be handle in different ways.  This was important to bring home to my son who may workout at 8pm on a weeknight but 2pm on a weekend.  I tend to worry about workout times more in the terms of "let's make sure he is not low during the night" and that is where it ended. This was a great talking point to use when I got home.

Heather continued the discussion on how to handle exercise and diabetes care by giving some great information on physiology.  She has been living with diabetes for 27 years and is an athlete as well as a physiotherapist and Certified Diabetes Educator.  She offered tips that my son and I had not even considered!

She noted that basal rates should be dropped by even a small bit up to two hours BEFORE exercise, the importance of eating within 15 minutes of exercise, and keeping an exercise diary.  She is the first person to show me real guidelines for when you can and cannot exercise when dealing with a high blood glucose level.  Its a question that parents often ask me when writing up plans for school--when is my child too high to participate in gym class? It turns out that the magic number--with or without ketones, is 17mmol (306mgdl).  Even without the presence of ketones, after 17, you will go higher with exercise! Fabulous to know for real world application!

Heather also showed us scenarios of why you may go higher after prolonged exercise even it you managed to stay in range for the entire period of exercise as well as how to fix this!  She talked about supplements, as well as the effect of temperature on insulin absorption.  Another light bulb moment for many people was when she discussed using multiple basal rates for one exercise time period! If you were doing an activity that required various levels of intensity, use various temporary basal rates.  This made many audience members go "Of course!" A final tidbit to remember--injuries will raise blood glucose levels. Duh! but still how often do we really think about it?

There was a lot more that both Heather and Sebastien had to say but those were some of the key points that were important for us.  Exercise is vital and as important as insulin when living with diabetes.  Attitude is everything--diabetes is not going away anytime soon so make it a positive part of your life!  Enjoy taking care of yourself. Enjoy being active and be the very best that you can be. Great messages from wonderful people!

Join me on De-Nial

This has been a very emotional week and I have tried to insulate myself from a lot because...well I don't know if I can handle too much more.  Recently, my family lost a dear young friend. He spent a lot of time at my house while growing up, was a good friend to my children and had only just become a new father himself. He death was both sudden and shocking.  He was only 21 and I still cannot begin to imagine the pain of his parents.

This week I have been seeing many Facebook posts about 3 or 4 children with Type 1 diabetes who died in the within the past few days.  That is way too much death for me to handle.  I honestly have not read the stories. I have heard of officials questioning the diet of an undiagnosed toddler who died--as if his sugar intake could "cause" type 1 diabetes rather than the medical community not diagnosing him? The horror is unimaginable.

As I mentioned the other day, this was also diabetes clinic week.  I still don't have our most recent A1c back but we got a great pep talk about how its just a number and its only a concern if there is continued problems. I give that speech but it was nice to hear them saying the same thing to my son.  No matter what  reading comes back, I hope we do watch things more carefully, learn and move with forward with a stronger footing.

After the doctor's pep talk and my mention of the possibility of a rebound at night after what I assumed was an undetected low, our nurse came in.  She reviewed the documentation and said "Oh, he had a really bad low did he?"

I was kind of puzzled. What bad low? What happened? Where was I?

"He went low at night. How terrifying for you!"

Crap! That low! I had put "that low" out of my head.  It was my big failure. It was my biggest fear almost realized. Did she have to mess with my protective bubble? As I said, this has been a rough week and I was doing a great job at insulating myself against any more stress or guilt.

Mess with my bubble she did! Instantly I had a flood of guilt as I remembered hearing someone else innocently telling me that they had woke up to hear my son moaning in his sleep and knowing that I didn't wake up!  The panic stormed back in as I relived the fear of "what if his body hadn't kicked out glycogen?"  Was he really going that low? Could something horrible really have happened between the 3am check when he was perfect and the 7am check when he was high?

I quickly shrugged her comment off stating that I didn't know "for sure" that it had happened. I made adjustments the following night based on assumptions and the fact that he was insulin resistant for most of the next day.  Extreme testing, him waking and telling me he was dropping, and subsequent basal reductions would suggest that a problem may have occurred, but let's again say that this was all very theoretical.

She simply nodded as if to say "if it looks like a duck, quacks like a duck, and walks like a duck, its probably a duck."  Or in diabetes terms "If it looked like a rebound, you had subsequent lows at a similar time, and a reduced basal fixed it, he probably went low and you missed it!"  Thank heavens she just nodded and smiled.  That allowed me to slip back into my lounger on the River De-Nial.  Its a beautiful place.  With all of the ugliness of the week, I think I will happily float there a little while longer. The alternative is not a good place to be--terror, guilt, and more sleeplessness.

Its a BAD day for Da 'Beetus

"Mom you should have warned me!"

What was he talking about?

"Mom you should have warned me that we have a clinic appointment tomorrow! I would have done a lot better. Today was a really bad day for da 'beetus!"

He did know that he had a clinic appointment today. He simply chose to forget...like he forgot to test a number of key times throughout the day and like he forgot to bolus for his supper! It was a very bad day for "da beetus" alright!

I have downloaded his meter. I have written out his basal patterns and the result is that I don't want to know what his A1c is because I know it will be bad.  I also wonder what I have been thinking in looking at his basal patterns on the weekend versus the weekdays.  The weekdays are a mess. My first guilty thought was "its time to do some serious basal testing and fix this!"  My second thought was "why?"  This is my son's last full week of school.  Next week is an exam every morning and then slacking...I mean studying every afternoon. After that it is basically summer vacation, a time when we switch over to a permanent "weekend" basal pattern.

I hate the thought of our team looking at his readings. They are a mess but each one tells a story.  They say... "He didn't weigh his cereal."  "He eats constantly and there is no break to test basal patterns."  "He is working out and we are working at learning how exercise impacts his insulin needs."  "Mom has given up asking for data and works with the little information that she gets."

My son said that I should just let our team do their job. That would be great but they have no data either! How do you say adjust that basal or bolus ratio based on a reading that was taken 20 minutes AFTER he ate? Hopefully they will simply be on board with helping to get us a CGM in the fall or whenever the DexCom comes to market.  Perhaps they they will remind him to test if he wants his licence.

I hate clinic appointments. Why do they always feel like you are going into the principal's even though you know that you are doing your very best? Perhaps I will just go in, keep quiet and let my son handle all of this one...that would make things interesting! Wish us luck!

Carb Counting King

Thank you to everyone who offered kind words and support after my post the other day.  The day proceeded to get a little worse but in a way that had nothing to do with diabetes and managed to bring things into perspective for both of us.  Each day will bring new challenges and as a parent, I have to work at letting go and saying just enough without making him feel as defeated as he did on Wednesday.

Not all days are that dark or frustrating however.  Over the past week we have had a new competition of sorts going on.  When my son and I eat together, he will usually wait for me to give him the carb count for his meal.  He is more than capable of doing this on his own and does a decent job when he is away from me, but when we eat together he enjoys the break…or so I thought! Now I think I am just a source of amusement for him.

I came to this realization the other day.  I analyzed his meal.  I totalled carbs, subtracted fiber, guesstimated weights, and after a number of minutes came up with a total.  He then said “I could have told you that without all of that work.”  I laughed at him and said “yeah right!” and so the battle lines were drawn.

He swore that while I added, subtracted and multiplied, he just “knew” what he needed to bolus.  As the competition began, I would no longer say the carb counts out loud (which I do both to help him learn and to bounce ideas off of him).  I quietly would get my total and then ask him for his.

The first time we did this I grinned as I asked him his total. It was a large meal and there was no way to just look and know.  He replied “129″.  My jaw dropped as that was the exact calculation that I had arrived at.  Darn, maybe he was onto something!

We did this a few more times–smoke rising from my ears as I did the math, and the calm coolness of Mr. “I just know”.  He was usually within 5g of carbohydrates.  I had taught him well or he eats the same on a regular basis but these meals were not his usual fair.  I was impressed.  His super carb counting skills came to a crash last night however.  I asked him his guess while knowing the answer.  He came up over 100 carbs too high!

I told him that he had just overdosed himself. Mom wins! He just shrugged in his usual manner and vowed to win the next round.  We may have our downs but strange diabetes games like this bring smiles to both of us and make me feel a whole lot better because I see that he really is learning.  

Make it go away

Today I had a conversation with my son that left me both devastated and frustrated. I know that he is just being a teen. I know that he is trying to exasperate me…and he succeeded.

My son has a diabetes clinic appointment coming up in a few days.  Neither of us are excited by this event.  We don’t really get a lot out of it and the wait times are crazy.  He can’t wait until he doesn’t have to go anymore. I reminded him that he will always have to go to have prescriptions refilled, etc.He was not impressed. I have told him that I have to do the same thing but that does not appease him.  We have been doing this since he was 2 and he wants to see an end date.

We discussed the fact that he had to attend his clinic appointments because  he needed a doctor to sign off on his driver’s licence in the fall. I don’t know what exactly is involved in the licensing procedure but I am pretty sure that his doctor has to give him the okay.  My son then asked if his licence would be restricted.  I assumed it would, just as a person with glasses must wear glasses, someone using insulin will have to be using their insulin.

He was not completely appeased but was doing okay until a little later on.  He was complaining about his being hot feet and stated that he should run around barefoot all of the time.  I said that that may not be the best idea.  He said it was fine for the Indians! I said that they were not running on insulin and he had to watch his feet.

That was the final straw for him.  He asked why he should even bother to get out of bed in the morning? He would have to watch his feet for the rest of his life.  He has to check his blood each time before he could drive.  What is the point to any of it? If he was born years ago, they would have left him to die and maybe that was the right thing!

I wanted to cry (and still do).  I wanted to scream–are you crazy!!!???? I almost lost you once! That is NOT the sort of talk I want to hear EVER!

I tried not to be mad. I tried to understand but I simply said, “Yep it sucks but that is your life and you will handle it.”

I know this is teen frustration. I know it will pass but he does scare me.  When he does not have me around, he doesn’t bother to test. He swears he can tell if he is high or low and he just wings it.  Yes, he probably can tell when he is running in range but the higher he runs himself the less sensitive he is and the more danger he skirts around. What will he do when he is on his own? The years are passing so quickly.

I have been sent an advanced copy of Moira McCarthy’s new book “Raising Teens with Diabetes”.  Perhaps she will have some strategies to help me cope. I think I could use a few about now. 

D-Math Muddle

There should be a warning in life to prepare you, some sort of course you could take, or as my son would suggest--an app that would do all of your diabetes related math. I can handle adding up carbs in a meal. I can subtract fiber.  I can even follow the formula for an extended bolus.  I can establish the carb factor for many homemade meals.  Figuring out how much basal my son needs at certain times can however be a nightmare!

Last night he had the brilliant idea of taking off his pump before a workout.  He planned to use the "disconnect" feature which gives him part of his missing basal upfront and then the rest at a specific time so that there is no basal missed when the pump is off. Smart kid! The only problem was he was high before disconnecting.  Do we correct the high? Probably not because he is exercising.  He has a cold.  His body is fighting germs.  Exercise may not be enough to cut it.  The pump of course gave a suggestion for the correction but it hadn't factored in those two key details.  Mom had no mathematical formula to do this with so my solution? Wing it! Take a smaller correction and hope for the best!

The next question came in the form of how much basal to you deliver before exercising? He figured he would be untether for about 45 minutes but the pump would only allow 50% of the basal rate.  Was he going to need all of his basal rate when he was going to be exercising anyway? Probably not. Where is that calculator that will tell me how much he will burn while exercising to the Body Beast as well as completing his own routine? Oh yeah, its more of the "Mom Guess" formula. Joy!

I assume my guesses did okay.  He was 7 (136) at 3am and woke up at 4(72).  My pancreatic skills sufficed for that round of exercise.  Let's hope I am as brilliant for today's battle.