Monday, December 26, 2011

The Wounded Soldier...

Note: Usually I have plastic skate guards rink-side and sugar in my pocket ... and the glucometer right inside the garage door on the mudroom shelves. I have become a bit 'lax.

A few curses were smattering my thought feed as I was crawling through our mudroom and into our kitchen. I must have looked ridiculous and I was second guessing the amount of tri-tip and spicey pasta that I had consumed for supper. Hockey helmet and skates were donned. I was desperately trying to keep my blades from touching the slate and wood flooring. I was trying to protect my blade edges.

I was berating myself a bit. You would think I would always be prepared by now. It has been over five years since Joe's diagnosis. Five years of thinking and planning and anticipating lows. Five years of sugar stashing. Five years of being on a constant, slightly nagging state of alert. Five years of bullshit that is my shit because I am my son's pancreas. So, you would think I would have my "Joe~Skating~On~The~Backyard~Rink~While~I~Am~Skating~On~The~Backyard~Rink~Blood~Glucose~Chcking~System" initiated for the 2011/2012 skating season. Welp, I didn't. Hence the "double amputee...wounded soldier" crawl through my home, while helmeted accessorized by a cage nonetheless.

Blindly, my hands ferreted the kitchen island. Yep, there it was. The glucometer. I inched my way, on my belly, back through our home ... out the garage door ... and out to the rink. Joe skated over. The glucometer was readied. 5~4~3~2~1. A 247 was obtained.

"Your good to go Buddy ... not low ... let's get on with some one-on-one!"

A day-in-the-life of the behind the scenes in pancreating for my son Joe.

Monday, November 21, 2011

DESPITE Diabetes Monday: The Pictures Say It All

On the Monday's in which I am hurting for "material", I am going to post a picture, a video, or story about Joe (or his family) doing something DESPITE the presence of diabetes in his life/our lives. My hope is that these little "snippets" will provide hope and inspire the families of newly diagnosed children.

This past summer Joe learned to mow the lawn. His determination and will and drive is all that I see in these pictures. The pump, the CGM, the medical ID bracelet blend and meld into the periphery.

A day-in-the-life of growing up with diabetes.

Saturday, October 1, 2011

How Long Has This Been Going On For?

Last night...

At 3:32 am....

I am awakened by the the bright glow of the hallway light flooding my room from the doorway, as Joe enters.

"Mom, can you cover me with a blanket? ... I just had a really bad dream..."

"Sure Buddy."

I got up. I followed Joe back to his room. I grabbed a blanket from his closet shelf and spread it over his lean little 8 year old body. I kissed his cherubic, dimpled cheek. I grabbed the glucometer and readied it for a blood sugar check. I lanced Joe's finger. The blood wicked up the test strip. 5-4-3-2-1. A 97 graced the screen. Dexter was showing a smooth trend-line. I picked up the Dex 4 container. Shook it a bit. Nothing. No sound. It was empty.

Joe then chimed in, "Oh, I just took the last glucose tab right when I woke up Mom ... Dexter was 71 with a diagonal down."

Too tired to process the information, I said goodnight and headed back to sleep.

This morning I addressed it. Apparently, Joe has been taking glucose tabs when he feels low in the middle of the night. He is not waking us up when he feels low. He reads Dexter and "boosts" accordingly. While I am encouraged by his independence and his diligence in avoiding lows, I am a bit concerned that he has not been letting me know that he is feeling low. And. His pump settings may be off a bit due to the fact that I have not been aware of his "nocturnal boosting". Great. I am livin' the dream folks...livin' the dream.

A day-in-the-life of reigning in Joe's evolving independence.

Thursday, September 29, 2011

It Was A Bad One

Trying to "harness" Joe's exuberant energy level is an impossible task. I know this. I don't even know why I tried. I expended more energy yelling at him while I was trying to run and keep up with him. I should have just saved myself and only focused on the running part. He is what he is and it is one of the things I love most about him.

"Walking LEGS Joe!"


"Joe WAIT!"





.... were repeated over and over and over again yesterday on the Snake Mountain Field Trip. It rained. The trail was wet and muddied. Leaves camouflaged rocks and roots that inhabited the path. My eyes were always glued to Joe who seemed to go into stealth mode and would suddenly be like 80 feet ahead of me. I fell a couple of times. It rained. I got eaten alive by mosquitoes. No was all good. Seriously.
I digress...back to the story...

While hiking, my friend said she had never seen me like this. She had never seen me so anxious about Joe. Odd how I am fine with him playing hockey, skating up and down ramps at skate parks, and careening down slip and slides while standing on boogie boards, but a damn hike in the woods sends me over the edge.

Let me explain.

I am afraid of losing my diabetic kid in the woods. I am afraid he will get lost. I am afraid he'll go low. I am afraid no one will be there to help him and he will die. Alone. It is that simple.


The hike started at a Tasmanian-like pace. Joe was working the trail with vigor. He and his friend were chatting incessantly. I was keeping up while hanging and talking with a good friend. Joe seemed fine ... for awhile. We had boosted him with 20 grams of carbs on the bus and decreased his basal by 30%.

About 10 minutes into the hike, Joe was 180 and double downing on Dexter. He drank a juice and continued on at a generous pace for a bit. Then he took another look at Dexter. I could tell he was starting to feel "off". Whenever he starts peeking at Dexter frequently like this, he is in for some massive blood sugar swings... 140, still double downing. I performed my heroics as a life-sized human Pez Dispenser and doled out a couple of Starbursts and changed the basal reduction to a negative 60%. I suggested a "break" from hiking until the arrows stop plummeting. No. Joe will hear none of it. We continued on with our friends.

A few minutes later...

" legs don't work."

Here we go. It will be a bad one.

Joe sat on the side of the trail. His blood sugar was 50. Dexter was showing a 40 and double-downing. He was dropping fast. We were in the middle of the woods in B.F.E. I encouraged our friends to move on. I didn't want to ruin their hike. Joe was chomping down Starbursts. I was kneeling beside him. As far as my eye could see, the trail was then uninhabited. I felt a teensy-tiny bit uneasy as Joe was pasty and his CGM was still showing a 40 with double arrows down.

Joe's voice snapped me out of my unease.

"Mom, you may need to carry me down the mountain. I cannot make it up."

This angered me.  Not at Joe. But at the disease; at the low. You see, my son ... my Joe ... is not a quitter. He would not back down from a hike. It isn't in his nature. The low was clouding his judgement and making him feel so weak that he was considering giving up.

"Joe, I know you feel bad now. Let's ride out the low. We are hiking this mountain. Has mom ever let you down before? You will feel differently in a couple of minutes Buddy. Hang in there."

With the pep-talk complete and a few more minutes under our belt and some good friends coming up along the path, we continued on our way up Snake Mountain. Joe made his way to the front of the pack and was with the first group that emerged from the woods; from the hike. Due to his speedy-hiking, I got the "added bonus" of sitting on the bus an extra 40 minutes waiting for the rest of the Third Graders to finish the hike. Yay me (in a "Livin' the Dream" ~ like voice).

A day-in-the-life of Type 1 Diabetes and Joe on Snake Mountain.

Sunday, September 18, 2011


This morning at 5:34 am....

I enter Joe's room and turn on the lamp. I place the test strip into the glucometer. I lance and then squeeze Joe's finger tip to create a blood bubble. The blood wicks up the strip. 5-4-3-2-1. A 234 is revealed on the screen. I bolus to correct.

Joe wakes. "Is it morning Mom?"

"It is early buddy...go back to bed. Happy five years of living with diabetes."

Joe smiles a bit. "Gee, thanks Mom. Happy five years of having a diabetic kid."

A day-in-the-life of celebrating Joe's spirit and his enduring strength.

Saturday, August 13, 2011


"I just don't understand it..." Joe was sitting on the bench rink-side last night. He had been over for a total of 4 blood sugar checks during an hour and a half period of time. He was uneasy with how his body was feeling.

"My body is playing tricks on me Mom. I feel low." His numbers during Power Skating Camp ranged from 170 to the 220s. Not low.

After each check, he sat on the bench; he drank some water; he put on his gloves; he grabbed his stick; he stepped out on the rink; then, he skated; he skated hard.

I did not know what to tell him. I said something like "It must be really frustrating to think you are low when you are not. Maybe you are just having an 'off' day Joe." Such a ~parenting~magazine~quote~of~an~explanation~, I know.

I wish I knew what it was like for Joe. How does it feel when he is high, low, climbing, and dropping? He almost sounded "betrayed" by the numbers displayed on the glucometer screen. Is that what it is like? Is that what it is like to have diabetes? Do you, at times, feel betrayed by your body? I dunno. He handled it with grace. He pulled himself together and he carried on.

A day-in-the-life.

Saturday, July 30, 2011

The Hill

"The way I look at it guys is that we have one of two options." We were faced with a dilemma on our "Adventure Ride" yesterday. Joe and I were in-line skating. Bridget was biking.

Bridget was glinting her eyes in the face of the blaring sun while trying to focus on me. Joe was crumpled by the side of a heavily traffic-ed road taking on sugar.

"We can either turn around and go back home on the same path that we took to get here. It is mostly down hill. It would be easier...blah...blah..."

"OR?" they chimed in.

"We can wait until Joe feels better and continue on up the hill. It is a big one. It will be challenging...blah...blah...blahbitty..."

As she was staring straight ahead and straddling her bike at the base of the steeply graded hill with the traffic whizzing by her, Bridget quietly stated under her breath "I hate Diabetes".

In a calm and amiable tone, Joe evenly stated "Me too Bridget."

I said nothing.

In unison, they agreed to take on the hill.

A day-in-the-life.

Thursday, July 21, 2011

For Joe...

Pre-post note: Joe's school, his teachers, his teacher's aides, his school nurse, his principal have all been exemplary in their care of children with diabetes. I am sharing this out of Joe's need and out of my need to support Joe.

"OK Joe, I need to talk."

Joe was pre-occupied with spying on Oscar (our Miniature Schnauzer) and Gus (our friend's Miniature Schnauzer) who were playing tug-of-war with a mechanically-squeaking Zhu Zhu pet, while Bridget played the Vietnamese Bamboo Xylophone as a "doggie distraction" (again, not making this stuff up).

"Joe, seriously, I need your opinion about something."

I have him come with me into a different room. "Joe will you be OK with doing all of your care in the Health Office next year? Or do you want to do some of it in the Classroom? I need to know."

Joe responds without hesitation "Not in the Health Office. I can do lunch, if I have to. I am late to Math every day. I am last to lunch every day. I miss so much and people make fun of me for not knowing what to do." This last bit was referencing instruction that Joe would miss while he was out of the Classroom for his Diabetes Care.

"Alright, I understand."

I don't know if the 'missing instruction', or being 'last to lunch', or being 'late to Math' are magnified in his 8 year old mind. Perhaps they are. What I do know. What I can tell you. And. What many of you know is that it isn't the pricks, the pokes, the lows, and the highs that get you down. It is the psycho-social ramifications that can wear on you a bit. The "waiting", the "missing", the "stopping" for Diabetes Care is the part of Type 1 that Joe could definitely do without.

Today on the phone, I explained that Joe is more than "diabetes", much more. He is a bright, eager student. I would hate for his school day routine to be based solely on his health needs. He is ready for more independence. I want to nurture this. I want to foster it. I want to facilitate a learning environment that isn't dictated by his diabetes care. I want this not for me, but because of what he said to me tonight. Trust me ... I was ready to not rock the boat.

Some history...

During Kindergarten and First Grade all of Joe's care was done in the Health Office. Those classrooms are in close proximity to the Health Office. While Joe did all of his "physical" care at that time, he relied on the school nurse to guide him verbally with blood sugar and carb count entries into his pump. In Second Grade, Joe continued to grow with his self-care and had made the "calls" when he should "boost", when he should do a "combo bolus" of 0%;100% over 30 minutes when he was going into lunch with a borderline low (70s) blood sugar, and his carb counting and nutrition label reading were progressing. At the beginning of Second Grade, the school nurse came to his classroom for his morning snack check and bolus; he would go to the Health Office for his lunch blood sugar and bolus; the nurse would come to the classroom for the afternoon blood sugar check. The care in the classroom was taking the school nurse away from the Health Office too much, so all of Joe's care was transitioned back to the Health Office for the second half of his Second Grade year.

In the spring ...

I had met with school personnel to start planning Joe's care for the 2011/2012 school year. We were wanting to support Joe with his independence and personal growth. We were also wanting to limit his time away from the classroom.

The Health Office is at the opposite end of the school from Joe's home room. On a good day, Joe walks down to the Health Office through the halls decorated with all kinds of cool art made by his school-mates, he walks down to the Health Office passing by many of his peers, he walks down to the Health Office by water fountains, bathrooms, and all kinds of interesting~to~an~8~year~old~boy stuff... he walks down to the Health Office at a minimum of 3 times daily for routine Diabetes Care. This is on a 'good day'... a day without lows ... a day without highs. Joe misses quite a bit of class-time due to Diabetes.

The tentative plan that school personnel and I had arrived at during this meeting was that: Joe would do his morning snack blood sugar check and bolus in the classroom with an aide over-seeing his self-care. He would do his lunch blood sugar check and bolus in the Health Office. His afternoon, post-lunch blood sugar check would, again, be supervised by an aide in the classroom.

The plan is being questioned a bit. I won't get into the specifics out of respect for the staff whom all care deeply for Joe and our family. I am writing to get ideas, suggestions, and input.

Parents of CWDs and/or PWDs can you please provide me with any insight to the following:

  1. Where does your child's care take place? Health Office? or Classroom? or Both?

  2. Who oversees or conducts your child's care while he/she is at school? Is it a Nurse? Is it an aide/a teacher/a principal? If it is not a Nurse, do they delegate the medical tasks to the non-medically licensed-personnel?

  3. Have you been asked to sign a waiver if care is provided by anyone other than a nurse?

  4. Any other good tips/ideas/situations that you think could be helpful?

A day-in-the-life of going to bat for Joe.

Wednesday, July 20, 2011

About The Phone...

So, his phone does not get service at the rink. Oh how I wish diabetes management was "black-and-white." It is difficult to explain the complexity of basic diabetes, let alone diabetes management on 'steroids', which is what managing this much activity is like...and add in leaving him for periods of time without a 'trained' person and no phone...well, I have been lurking more than I anticipated.


The car-ride to camp yesterday was much different than the car-ride to camp on Monday.

Monday's drive sounded something like this: "Joe decrease your basal by 40% for 7 hours"... "Joe don't correct for lunch if your number is 140 to 220" ... "call me if your number is over 220 because we should just do a partial correction"... " just call me for all boluses, call me for snack times and lunch time if I am not there."

Yesterday's car ride went down like: "Joe you gotta keep moving when you are in defensive mode. You need the momentum to stop their push" .."Skate with the puck" ... "You, Joe, are an incredible skater and you know mom does not hand out compliments readily" ... "Try some shots from center ice" ... "Joe, your 'behind the net defensive move' is not a 'move'. Don't let yourself get trapped behind the net!"

Do you see the shift from Day 1 to Day 2?

From diabetes to hockey?

We are doing well.

First off, Joe loves Hockey Camp! The schedule consists of ice time from 8:30am until 11:30am. He eats lunch from 11:40 until noon. Then there is classroom time and land drills for the remainder of the day. The camp is fast paced and the activity level is up there. The diabetes management has been similar to how I ended up managing Hockey Tournaments during his past season.

Day 1:

I instructed Joe to decrease his basal by 40% while driving to the camp. I had intended to check his pump when we arrived to camp (I didn't...this is some foreshadowing).

8:30 am: Pre-ice blood sugar was 236, we did nothing

8:50 am: I was watching Joe from the warm room. He stepped off the ice and checked a number. He was 208. He did nothing.

9:10 am: Again, I watched him step off the ice. He was 150. He shot back 14grams of Nerds.

10:20 am: While the ice was being groomed, Joe came off for a snack. He was 53. He drank a juice. I then checked the basal reduction that wasn't a "reduction". Joe had accidentally set the pump to give him 40% more insulin per hour. I could have beat myself up here. I didn't. Joe and I treated the low and never looked back. Joe was really starting to feel the hunger pains from the low. He ate his F-Factor Bar (26 grams of carbs). After realizing our error and knowing he was headed back onto the ice for another hour, we did not bolus for it.

10:50 am: Blood glucose was 170.

11:40 am: As I entered the locker room Joe was programming his pump. His blood sugar was 218 and he was going to eat 88 grams of carbs. I had written a note to only bolus for 80 grams. I did not go over corrections. I told Joe to only do a carb bolus here. I did not want him to correct for the 218. I was concerned he would go low.

1:20 pm: While I was gone, Joe checked a number. He was 102. He took 2 Starbursts.

2:50 pm: Joe checked a number as we pulled out of the parking lot. He was 150.

*From 4pm until 6pm Joe was in the 300s. I find this to happen when we reduce basals and boost aggressively. I did not know how his blood sugars would respond to this particular situation. Tomorrow I will incorporate a post-camp basal increase into our "plan".

Day 2:

I decreased Joe's basal by 40% before pulling out of the driveway.

8:30am: Pre-ice blood sugar was 221 (nice)

9:30am: I am spying from the warm room. Joe steps off the ice for a routine check. 209. He does nothing (which is what I told him to do for that number).

10:20 am: I help Joe with snack. He is 150. I tell him to only bolus for 16 grams of the 26 gram F-Factor bar.

11:40 am: BG 136. Joe boluses for lunch giving himself 8 grams of carb for "free".

1:10 pm: BG was 213. He does nothing as he was going outside for drills.

2:20 pm: After the drills he checked himself. He was 99. He took 8 grams of sugar.

*Per previous experiences and Monday's post Camp highs, I decided to crank up Joe's basal by 50% for the next 3 hours. His blood sugars for the afternoon stayed in the 150s.

What I am learning: This whole letting Joe go out into the world without his Head Auxiliary Pancreas is going to be a "process". There will be mistakes. The numbers will not be perfect. Joe has "basic diabetes" and even "not-so-basic diabetes" down. I know Joe. I know that having to march from the locker rooms to a land-line in the front office to call his mom every time he boluses would take away from his first Hockey Camp experience. Admittedly, I have been lurking in the warm room. I check in with Joe three times daily. For snacks and lunch I am by his side. The "free carbs" with his snacks and lunch depend on where his number is. Also, I want him to not correct for blood sugars that range from 140 to 220, but I want the "negative" correction for blood sugars less than 120, and I wanna only partially correct for blood sugars greater than 220. Yes, I have issues.

We are doing this. Joe is doing this.

A day-in-the-life of trying to be a 'Remote Support Pancreas'. It is a tough job, but it must be done to allow my son to grow.

Monday, July 18, 2011

Ah...9-1-1...Q&A Session With Joe

Good, the correction is kicking in. "Dexter" just showed a "175 smooth".

It is 4:30 am. I have been up since 2:30. Joe was high (blood sugar was 231), not "correctable~night ~ high." I usually only correct for blood sugars over 250 during the night out of fear of lows. This is a special night though. I did not want him to wake-up high and have "correction~insulin" on board along with his breakfast insulin as he starts his first day of Hockey Camp.



I was shaking my head a bit, in disbelief, at myself, dressed in black yoga pants, a long sleeve shirt, with a jacket tied around my waist. I was sweating. It was 90 degrees. I was driving Joe to a rink.

Looking in the rear view mirror, I saw Joe peering down at his phone; thinking about camp I assumed. He then started pelting me with questions. "So, I call you first?" "What if your phone is off?" "What if someone makes you turn it off?" "Then I call dad?" "What if his phone is off" "Then I call 9-1-1?"

*Oh FUdGe-sickles*

My responses were as follows ... "Yep, call me first... but really Joe, I am gonna be there with you most of the time." ... "My phone won't be off. It never is when you are not with me." ..."No one can make me turn off my phone...nope, no one ... " (I would go all D' Mama Honey Badger on them if they gave me any guff) "Nope not even a policeman could make me turn it off." "Yep, dad." ... "I'll tell dad to keep his phone on this week."

Then to address the 9-1-1 question. Oy.

"Ah Joe, the 9-1-1 is on your phone to remind coaches or teachers or friends to call for emergency assistance in case you are unable to help yourself with your diabetes."

Joe replied "Well should I call them if I cannot get a hold of you or dad?"

Clearly my vague response above isn't gonna cut it. I am not one to mince words and have been open and honest with Joe about Type 1, so why am I struggling here?

"Joe please...please...please (insert a silent "For The LOVE of GOD" and a up~to~the~right~sideways heavily mascara'd fringed eyeball roll here) DO.NOT.CALL 9-1-1 if you cannot get a hold of mom or dad while you are at camp."

Joe then asked "Well when would my coaches need to call them?"

"Well Joe, they may need to call them if you went so low that you could not help yourself ... like if you went unconscious or had a seizure. The chances of that happening are rare Joe. But, we have to be prepared in case. Right?"

*please say "right"...please say "right"...please say "right" ... and drop this uncomfortable topic*

Joe then has the notion that 9-1-1 could 'help him' with bolusing if he cannot reach me. "Ah, Joe... (where to even begin)... 9-1-1 will not know the first thing about bolusing you. They can save you in life or death emergencies, but please, please, please do not call them for help with bolusing or carb counting. Trust me on this."

A day-in-the-life of hoping Joe doesn't call 9-1-1 for Diabetes Management instructions.

Check out the awesome Camp Tips from the DOC here.

Saturday, July 16, 2011

The Phone...

About a week ago a good friend asked me if it helps knowing adults with Type 1? She wondered if knowing adults that have had diabetes since they were pre-schoolers gave me hope for Joe's future.

I don't really think that far ahead.

I suppose, I take it day-by-day.

It is hard to describe. When I send him off on his bike as I follow on foot, I wonder if I will find him in the street crumpled from a low. I am relieved when I find him pedalling with intense vigor. When he is left in the car recovering from a low as I run into grab Bridget from an activity, I wonder what I will see when I return to our van. I am relieved when I find Joe with his eyes open and his skin taking on color. When I call into the house, I pause and wait for a response. I am relieved when the lisp-kissed, nasally voiced Joe calls out. Always, in the back of my the periphery of my conscious, I half expect no response ... eyes closed ... pale integument ... scrumpled...crumpled ... in-need-of-immediate-assistance Joe.


So, Joe has been giving camp a bit more thought than I knew about.

Last night, Joe's phone came.

Last night as he came up the stairs, Joe said "I feel low". He then headed into the bathroom. I stopped him. I told him to check a number first. I reminded him that he must "react" to a low feeling immediately. If he puts it off he could become too low to know what to do to help himself.

I don't know if it was the arrival of the phone and what it represents that initiated his response.

Perhaps it was the blood sugar of 63...and my reminder of the sequela of untreated lows.

Joe curled his long, lanky body up in my lap last night and cried in my arms. He cried because he is scared. He is scared to go to camp without me. He is scared to manage diabetes without "help". I explained that I will be around the rink quite a bit and we will figure this out as we go. I re-iterated that he is never alone. His family, his friends, his community envelope him in love and in support and in certitude.

I then did what any Temporary Head Pancreata In Charge would do ... I quizzed the shit outta him.

Me: "What do you do when you eat?"

Joe: "I look at the carbs."

Me: "What else? What else has to happen when you eat? Let me know everything that you do..." I wanted to make sure he knew the sequence of what needs to take place without me in the midst reminding him.

Joe: Right on the money with, "Check a number ... count the carbs ... bolus."

Me: "What if you are low?"

Joe: "I take 3 sugars or drink a juice."

Me: "What do you need to do 15 minutes or so after taking sugar?"

Joe: "Check a number to make sure I have come up."

Me: "Right."

Mentally and physically preparing Joe for his day-in-the-life at Hockey Camp with Type 1 Diabetes in tow. 8 years old seems so young to me right now.

Thursday, July 14, 2011

The Ramp

"Joe, pull Dexter outta your pouch and eat your bunnies!"

I wonder if I sounded a bit "nerdy" to the teenage boarders and skaters and bikers? Joe took his bike, his Rollerblades, and his skateboard to our local Skate Park yesterday. He consumed about 45 grams of free-carbs just to keep his blood glucose in the 70s and 80s.

The ramps and jumps are a bit intimidating at this particular park. Joe flirts with them a bit as he rides and rolls over the lower portion of the ramps. He is slowly creeping higher and higher up the inclines. His confidence wanes when he is on ramps that are over 5 feet. He rides and skates up them without hesitation. It is the going down that seems to make him stop and take pause.

I was encouraged by his reserved caution, as I looked up and watched him struggle with going down a rather high ramp while he sat at the peak perched on his bike. I could see the desire, the want, of conquering the fear of going down. The internal pull of his fear was visible. The older boys were encouraging to him. I stood back and watched the conflict conveyed through his eyes, his face, and his body. After many minutes, Joe decided he wasn't ready. He slid down the ramp while supporting his bike. He did not seem disappointed in himself. He simply stated "I am just not ready for that ramp".

Which brings me to my post...

A staff member from the Tim Thomas Hockey Camp called me yesterday afternoon. The connection was static-y, which in part, added to my feeling of isolation as I tried briefly to explain Joe's situation with camp, Type 1, lows, exercise.

I started out with a "thank you" for calling me back...blah, blah, blah..."My son Joe is in your camp next week in Vermont ... blah" ... "He has Type 1 Diabetes...insulin pump...blah...blah...blahbitty"... "Do you have a trainer that travels with your staff?"

Static-y...wind-ily...connected staff member responds with "well we do have someone that is CPR certified."


How do I even go into anything about anything with this guy over the phone?

I found out that they divide up the campers by age and ability. The groups will consist of about 15 kids. A coach will be assigned to stay with the group throughout the day as the campers go through different stations. They will be on the ice for 3 hours and then they will be off the ice for 3 hours for outside play, hockey videos, lunch...etc. Joe's schedule will not be known to me until I drop him off Monday morning.

Upon conclusion of the phone call, the pleasant staff member did say that I could give Joe's coach my cell phone number when I drop Joe off on Monday. I almost choked on my spittle at that point, thinking "you bet your bippy he is gonna have my cell phone number and a crash course on lows."

Explaining to the general public that a low blood sugar is something that must be dealt with immediately is complicated. It is difficult to convey that Joe may become a bit "off", confused, or be totally "normal" with a dropping glucose level. The lows can come on suddenly and they must be tended to...and Joe may not be in his right mind to help himself in this situation as the only fuel source for brain cells is glucose. The lows are one thing. Then add in what must go into eating: the blood sugar check, the carb counting, the bolusing, the "he must eat everything" ... and ... the compensation of insulin doses for activity, well, it is too much to communicate in an abbreviated manner for a week long camp.

I am looking down the "ramp" much like Joe was yesterday.

Am I ready?

Here is what I have come up with:

  • Joe and I talked about a basal reduction for the day of 35% (I said 30%, he said 40%, and then he compromised with 35% ~ fine).

  • I tweaked the Play Date Cheat Sheet for camp, keeping it simple...1 page.

  • I will briefly go over the Camp Day Cheat Sheet and emphasize the importance of treating a low blood sugar with Joe's coach. I will have my cell phone number highlighted at the bottom of the Cheat Sheet.

  • I will have Joe carry Woodchuck everywhere with him. It houses his glucometer and sugar sources.

  • I am going to only partially bolus for breakfast. My biggest concern is Joe skating with breakfast IOB circulating. He will drop over a 100 points in 30 minutes with breakfast IOB lurking in his system. I can always correct a high before I leave him if need be.

  • I will pack separate bags for snacks and lunch. Each bag will contain a carb count to make it simple for Joe to bolus.

  • Buying TracFone today or tomorrow so that Joe can "practice" calling me over the weekend.

  • I think I will go in every hour or hour and a half on the first day and go from there.

I wanna make it down the ramp. I wanna have the courage to push off and go. However, I think I may need to slide down the "ramp" on my butt.

A day-in-the-life of a glimpse of what it takes to send Type 1 to camp or anywhere really. It takes courage.

Thursday, July 7, 2011

"Rodent-like" MacGyver-ing

Sometimes, in this life, I feel the rules don't apply to me. Like the Rule of 15's... sometimes I tweak that a bit. Or, like a month ago ... when I was going 32mph in a 25mph zone and I got pulled over by the Fuzz, I immediately asked the officer for a reason as to why I was being detained. He gave me a little guff and then let me know. I was internally eye-rolling my Lancome fringed eyeballs and internally muttering a "For goodness Sake isn't there like a 10mph grace-speed with the whole speeding thing?".


I found out why, the hard way, you are supposed to use that little plug-cap that is enclosed with the box of Animas Insets. Now, don't get me wrong. I did, at one time, use them. I used them for every bath. I "plugged Joe off" for every dip in the pool or the lake. I did...years ago. Truly, I did.

When you are dealing with diabetes and the non-stop routine and management you start to cut corners a bit. Or... *ahemm*... at least I do. I count carbs down to the gram, I pop sites into Joe as sterile-y as possible, I mother bird like a pro... but apparently I cannot be bothered with this cap-thingy. Frankly, I haven't used it in years. We have never had an issue due to my plugging exclusion. No infections. No clogs. No anything. It was a corner I was fine with cutting in the grand scheme of things.


Back to the story...

We are vacationing. We are visiting Cape Cod.

Yesterday was the first time Bridget and Joe have ever played on an ocean beach. There was digging. There was castle making. There was crab saving. There was a pump~site~clogged~with~beach~sand. And. Once again, managing Type 1 in Joe's life provided us with adventure and the ability to effortless-ly entertain any on-lookers ... and trust me...there were a few.

Here is how it went down:

Joe emerged from making "low~tide~crab~sanctuaries" for a blood sugar check. 5~4~3~2~1. A 156 was obtained. He wanted to munch on a few potato chips. Fine. I am not a carb~tight~wad, as many of you know. I figured I would let him have a few chips for "free", but would plug him in and crank in a couple of hours of basal before he went back to wave-jumping and crab-saving. I go to plug in the pump tubing to his site. I line it up and start to insert falls short of the "click". I flip it around...try to cram it in "click".

The Removed Site (note the tan color in the set)

The pump insertion site was filled with sand. Joe calls for a site change and exposed his cheek. Dave was my assistant. I needed one. Slapping in a site in the middle of a wind-swept, sandy beach requires some mad pancreating skillz. IV 3000s were blowing in the breeze...IV Prep was precariously placed on a towel ... We used the old cartridge. It still held about 36 units of insulin. And, we used the old tubing too to avoid the whole unloading, re-loading, and priming steps that the pump would require.

Once the site was in and 2 hours of basal were given, I looked in Woodchuck #2 to see if we had a plug. I did have a plug, but it was for the Contact-Detach system. It didn't fit the Inset. Dave then MacGyvered the system by using the connector off of the new set. He went all "rodent~like" and chewed off the tubing. We then plugged the new site with the connector and covered the whole set~up with the IV 3000.

The Chewed-Off Tubing MacGyvered Plug

It worked like a charm.

A day-in-the-life of realizing the rules are there for a reason... sometimes.

Tuesday, July 5, 2011

That Is NOT On My Playdate Cheat Sheet...

What sending Type 1 on a Play Date looks like:

A few days ago...

The water mushroom and the blaring music were a concern.

I lounged on my chair by the pool. The cell phone was poised on the arm of the chair. My eyes scanned it regularly for any sign of a call, a message, a notification. I was with Bridget and her friend. Joe was at his friend Adie's house. The phone is a constant companion during Joe's absence. I have trust and faith in Joe and in Nikki, Adie's mother. They may need me though.

The green notification light started blinking.

My right hand refreshed the phone. Damn. I missed the call. It was them.

I call them. The peripheral background noise makes the call difficult to interpret. Nikki let's me know that Joe was 63. I think that is what she said. I repeat into the phone staccato-like "six" "three". She confirmed. Something about sugar or Starbursts was mentioned. I ask in a loud cave-woman-y voice "He.took.sugar!?" Again, at least I can hear the "yes" that is delivered in response. Nikki goes onto say something about Joe wanting a snack and he was mumbling something at her like "combo bolus". Well.... Ok then. This isn't on my Play Date Cheat Sheet.

Joe gets on the phone.

The lisp-y, the nasal-y, and the soft spoken-y really isn't working for me here. The noise of the water 'shroom splashing and the Pop Rock spewing from the speakers is too much. I heard "snack" and "combo". I interpreted the issue as "Joe, are you wanting to eat now? ... are you calling because you don't want to wait the 15 minutes to recheck your blood sugar? ... and you want to do a combo bolus to cover the snack?"

I heard a "yes", with the emphasis on the slightly drawn out "s" that we all know and love in the lisp.


I understood.

I tell him to do a 0%:100% extended over 30 minutes (this is NOT intended as medical advice). I tell him not to enter in his BG, assuming he will correct with the 12 grams of carbs he just consumed for the low. I can pick out an "OK" from his end. Then, abruptly, the call is ended. He hung up, ready to man his pump with the instruction given I assume.

Bridget comes at me from the snack bar. She is shaking two Tootsie Pops like they are maracas to the beat of the music with confidence and sass. I continue to scan my phone.

A text came in... "Don't worry... we r all good!"

I responded with ..."I know he is in good hands!"

A couple of hours later, when Joe is back with me, he checks his number. A 108 graces the glucometer screen.

A day-in-the-life of critical thinking as he expands his independence.

Click here for my original post on "Play Dates".

Monday, June 20, 2011

The Little Things...

As we arrived at the farm, I give Bridget a "sush" sign with my pointer finger placed to my lips. She asks quietly, "Can I stay in the car?"

A hushed answer of something like "Sure...I am just gonna check Joe's number and then I'll grab the veggies quick."

She knows that I am worried.

Joe is asleep or passed out or unconscious. I don't know which. My hunch is asleep, but with "D" as part of the picture it clouds my vision at times.

The past few days have been sun-up to sun-down activity in full sun. He is tired.

We had left the pool about 25 minutes prior. He slipped and fell in the pool parking lot as we departed. Road rash resulted. He didn't cry. He got up and brushed himself off. Once we were to the van though, his pump started in with the decrescendo alarm. "Pump Not Primed" was messaged on the screen. Fine. I unhook the pump from Joe. I rewound. I re-loaded the cartridge. I hooked the pump back up to Joe's site. we went for our 20 minute, or so, drive to the farm. I hadn't checked Joe's blood glucose for about an hour...or so. Who knows.

I blare the music. I am thankful for the peace of the drive. The kids are too tired to bicker. The music drowns out any conversation they may want to initiate. I can mindlessly drive. I can enjoy my thoughts without interruption. I am now exhaling.

Then, I notice in the rear view mirror that Joe is out. Head~slumping~under~the~seat~belt, head~bobbing, mouth~slobbering~a~ bit~ "out". In my mind the following thoughts fleet "he is just asleep"..."however, what if the pump malfunctioned after that fall?" ... "how much insulin was in the cartridge?" ... "it would be too soon for him to pass out from that ... right?" ... "stop it, he is just sleeping!" ... "he is OK" ... "but..."

The thoughts continue as such. The positive, happy go-lucky me talking down the more realistic, morbid me. Through this conversation in my head, I decide to not freak and to just check his number once I arrive at the farm.

I prick his finger. He doesn't budge. 5-4-3-2-1. A 213 is obtained. I don't correct.

Salad turnips,
kale, lettuce, garlic scapes, and radishes are gathered quickly so that I can get back to my tired crew that is holed up in the van.

Bridget is struggling with the in's and out's of sleep.

The drive home is more relaxing with the knowledge that Joe is indeed sleeping instead of the alternatives. Ah .... the little things.

A day-in-the-life of what enters my thoughts while caring for my child with Type 1 Diabetes.

Saturday, June 11, 2011

The One In Which My Hair Accessories Save Joe???

We had a first tonight. It was a bit scary. Nothing that a firm, thicker than average bobby-pin adorned with a glittery red star couldn't take care of.

Joe had a busy week. His week entailed all the usual end-of-the-school-year festivities. Baseball for 2 hours each evening on Monday, Tuesday, and Wednesday. A field trip in 90 degree weather with a 3 mile hike on Wednesday. Thursday was Field Day followed by the school Bar-B-Q. Today was the "Closing Day" of baseball.

Joe is grumpy.

Joe refused to eat dinner tonight ... not out of spite, he was just 'not hungry'.

Fine. I decided to basal assess the little troll. He has been running high after dinner for the past few nights and I would love to see what is going on with his underlying rates.

I let him know that we would not be assembling any sort of meal for him at a later point in the evening. He understood.

About an hour later...

Joe was asking for food. Dave and I stood our ground and refused. I don't know if it comes through on Beta Buddies, but Joe is a strong-willed being. I admire this quality. It will serve him well. However, at times, it can be a difficult quality to cultivate and nurture...and tolerate...and deal with... and live with...and co-habitate with.


Joe, angrily and somewhat stomp-ily, headed up to his room. I went to the super-market for some wine and cosmetic products. Dave and Bridget were reading. I was gone for about 45 minutes.

Upon my return I checked in with Bridget. She said something about "Joe's door being locked... been trying to get in....blah...blah...blah" (she has a 'talking issue').


His last number was 80 about an hour or so ago.

I went to his door and attempted to turn the knob. Nothing. It was locked. I knocked, loudly.

No response.

I pounded and yelled a bit ... "Joe!!! Let me in!"

No response.

I called down the stairs for Dave. I needed some "back-up".

Then, I started in with the threats, "Joe Maher if you do not open this door right now there is no TV, no DS, no roller blading, no nothing, I will take away E.V.E.R.Y.T.H.I.N.G in this world that makes your life pleasurable!!!!"

No response.


Dave was then pounding on Joe's door, while I ran to grab my zebra-print bobby pin. I unbent it and straightened it a bit... I ruined it (one of my favorites). I tried slipping it into the key hole. It was too flimsy. Nothing happened. The door remained locked. My thoughts fleet to Joe's window. It is too high for us to reach exteriorly. Out of desperation and the need to 'do something' I pounded on Joe's door. Dave ran into our room and banged on the wall that separates Joe's room from my closet. Our efforts were loud.

No response.

Bridget was watching and asked (no, not even I ... can make this "stuff" up) "where is the cowbell?" I let her know that "this is no time for cowbell".

Dave ran down stairs. For what? I do not know. (a screwdriver, he now tells me)

I ran to my bathroom for my red~glitter~star~bobby~pin. It was firmer than my zebra one. It worked.

The sight when I entered was a sleeping Joe ... sweaty ... drooly ... sleeps~like~the~dead~Joe. It took a couple of minutes to shake and wake him. Dexter read 200 (double up). Real-time BG was 188. Wonderful, I found out why we are having so many post-dinner highs. I crank up his basal by 50% for 2 hours. I went ahead and increased his basal rate from 5pm to 7pm from 0.175units/hour to 0.2units/hour.

Joe was already back to sleep.

Dave, Bridget, and I were somewhat stunned over the antics that occurred during the previous 4 to 5 minute window of time.

A day-in-the-life of caring for someone you love who happens to have Type 1 Diabetes.

Sunday, June 5, 2011

1000 Words..............

I've had this picture sitting in my gmail account for about a month now. It was today that I actually really looked at it. I noticed the signage to the left. I know of no one that "Takes On LIFE" better than my number 1, Type 1 kid.


A day-in-the-life of AWE.

Sunday, May 29, 2011

Even On Parade Day...Every Day... It Is There...

I haven't done one of these posts in awhile. It is more of a "day-in-the-life" of what many may not notice or see. The underlying work of diabetes is lost on many. Around-the-clock it goes. It knows no breaks. It does not acknowledge holidays. Vacations are not an option.

I have become so accustomed to utilizing Dexter (Joe's Dexcom 7+ CGM) in managing activity and special events that I felt "blind" yesterday. You see, Dexter fell out Friday, after school. Joe did not want to have a new one put in. He wanted a little "Dexter Break". Fine by me. I get it. It, diabetes and it's entourage, is a load, physically and mentally.

Note: Yes, in hindsight a decreased basal would have been a good idea for our day. First off, I think the rogue-pizza-insulin-resistant-highs that were corrected all night long finally crashed. The insulin caught up to him. Also, I had no idea that he was going to go all Lithium Energizer Bunny on me.

5:09am ~ Joe wakes. His BG is 309. Chasing down pizza all night long sans Dexter was brutal for Dave. I am not comfortable cranking up the basal (as was recommended on the Pizza Sampler by Type 1 University), while Joe sleeps, unless I have the "back-up support" and peace of mind that Dexter provides me with. A correction dose of insulin is given.

7:08am ~ The pump is alarming for low insulin. A site change is done. BG is 104. Joe eats 28grams weight worth of Honey Nut Cheerios, 1/2 cup Milk, and 2 Gummi Vitamins. Carb total is 32 grams. Insulin is bolused.

9:07am ~ Joe is going to participate in our local Memorial Day Parade. We are getting ready to leave the house. Faces are painted. Red, White, and Blue is donned. His BG is 116. That is too low for that time of day and pre-parade. He will crash. He eats a chocolate graham cracker (11grams) for free.

Here is where I really start missing Dexter and am craving his presence for the remainder of the day.

9:48am ~ There are snacks at "bike/scooter decorating area". Joe would like to partake. Fine, I am no "carb-tight-wad". I have no clue where his number is and am nervous about a full bolus, but don't know how much he boosted-up from the chocolate graham cracker that he had 40 minutes prior. His BG was 72. He ate 30grams of carbs. I only bolused for 1/2 and plugged in the 72 BG into his pump so that a negative correction was also taken into consideration.

Here is the point in the day where Joe goes "ALL JOE" on me and ramps the activity up.

10:18am ~ Joe had been scootering NON-STOP with his pals while waiting for the parade to start. Up and down the dirt, puddle-laden road ... back-and-forth ... back-and-forth. Most parents would just think how wonderful it is that their child is so active. Me, I am thinking "For "goodness" Sake, he is going to bottom out mid-parade and I am gonna take a Shriner's Car up the bum as I am hunched over checking a Blood Sugar". The parade is getting started his BG was 128. He boosts with a juice (15grams).

11:21am ~ Post-parade-scootering BG was 87. Lucky for Joe, candy was being thrown into the crowd where we were hanging out and he boosted with it.

11:58am ~ Lunch. Still wishing for Dexter here. I would not re-check here normally, but I feel lost and blind. BG is 121. Joe eats a turkey sandwich and has a 1/2 cup of milk (40 grams of carb). I bolus for it all... I should not have.

1:45pm ~ Joe has been outside playing basketball and has been careening up and down the 'hood on his scooter. His BG is 55. 15 grams of carb are consumed.

2:09pm ~ Opening Day of our neighborhood pool! Oh Yippee (S-A-R-C-A-S-M)! Joe's BG is 78. Of course he wants to swim. He consumes another 8 grams of carb and his pump is removed. Dave takes the kids to the pool, while I do some yard-work.

3:01pm ~ Darn! They're back! Already. BG is 121. The pump is re-attached to Joe.

Here is where the day gets "real-interesting". Bridget decides that she and Joe are going to have their own parade up and down the street...just the two of them. She proceeds to apply a full face of paint. She is going for a "dog-like-look" and is carrying a slab of green tissue paper with Sharpie-d words stating "SAVE THE ANIMALS". Joe then proceeds with the paint and applies a clown-like look. It was a lot of paint. There was even "clumpage". So, face painted children ... Bridget on foot ... Joe on Rollerblades ... proceed their march/skate up and down the street looking like a freak-show. Soon into the "parade" it started raining. The tissue paper disintegrated. The kids came in slightly deflated over their foiled plans for calling attention to all the animals that need "saving".


P90X was being attempted by yours truly. Kempo-X. Kempo is a workout that has you throwing a ton of punches and kicks with "breaks" of running in place with your knees up and jumping jacks that go awry with some "airborne" action. Yes, you are "jacking" mid-air. It isn't as bad as it sounds. Of course, (insert heavily mascara fringed eye-roll here)Joe decided to participate. I was mid-workout. I asked if he felt "OK"? I know better. I should have had him "boost". I didn't. I was focused on finishing my workout. As he does with everything, Joe participated with vigor and determination.

5:34pm ~ Post P-90X, pre-dinner BG was 61. I go ahead and have him eat and hold off on bolusing for about 20 minutes. Bean Burritos were on the menu. (31 grams each, he ate 1 and a 1/2). I want to insert here my favorite tortillas are the Josephs Brand, Oat~Flax~Wheat. They are 11 grams of carb, but 6 grams (I believe) of fiber...only 5 net grams of carb for those of you that subtract fiber.

Joe's pump site fell off in the bath.


A new one was popped in. Dexter was re-inserted.

7:39pm ~Bed time BG was 112.

9:49pm ~ BG 185. Dexter was calibrated.

12:41am ~ BG 251. Insulin was given to correct.

A day-in-the-life of Joe's day-in-the-life even on Parade Day. Happy Memorial Day!

Tuesday, May 17, 2011


Watching Joe clad in a "get-up" of hockey socks pulled up to his knees, short-short soccer shorts (he has grown over the winter), tubing swaying in the breeze, and his long lean legs with stained knee caps skipping through the parking lot, while a beer bottle at the bottom of the bag he was carrying clinked and clanked as it kept hitting the pavement in his wake, filled me with pride.

Yesterday, we headed into our local supermarket to recycle cans and bottles. The last "installment" from our neighborhood.

Joe had wanted to do more than "ask" for money for the Walk To Cure Diabetes. He wanted to earn it. He and Bridget decided to collect cans and bottles from our street and recycle them to raise funds to donate to JDRF.

The Drafted Letter ... that was distributed door-to-door a week before "Collection Day"

Have you ever roller-bladed? Have you ever maneuvered stairs while on roller-blades? Well Joe has. Against my better judgement, I let him distribute the CANS FOR A CURE letter door-to-door. The homes on our street are of a Colonial and Cape variety. They all have at least 3 stair steps leading up to the front door. Watching him blade, side-step up the stairs, and then sit on his bottom to inch down the stairs ... was painful. But, he did it.

After The Letter Distribution...see the "blades"?

Collection day...Joe asked to wear roller-blades for collecting the cans as well. I put my foot down on that idea.

The Collecting...

The "Supervising"...

Joe would get somewhat discouraged if there weren't cans out on the porch. He stated "these people aren't taking me seriously." He wanted to knock on their doors to point out that we were collecting the cans at this point in time. I reminded him that we distributed the letters so that we would not need to bother people. This didn't convince him. Bother people he did. If there were not cans left out, Joe went to the door, rang the doorbell, and explained his cause. He was pleasantly surprised when one generous neighbor gave him a $10.oo bill to donate.


Doin' the "Dirty"... The Maher Clan was cramming bottles and cans into those machines like nobody's beeswax.

The Kids Loved This Part...

Bridget and Joe saved money throughout the year. They saved coins, gift money, and allowance money. They store it in an Animas Cartridge box. This money is solely dedicated to a CURE. Their idea, not mine. They added their CAN money to their "savings" money.

Sorting And Counting...

Joe Keeping Track Of Money "Secured" To Date...

In the four years since Joe has had Type 1 I have always been very cautious in this territory. The "Cure Territory" is dangerous I think. I have always been careful in what I say around Joe during the fundraising, the letter writing, the Walk Kick-Off Luncheon, and in general about a CURE. You see, I have never wanted him to think there is anything "wrong" with him per se. I have never wanted him to think something about him must be changed or fixed to make him "right". I have never wanted him to count on a CURE in his lifetime. I don't want him to be disappointed.

Perhaps I need to follow his and Bridget's lead on this one. My hope should be more than just a flicker.

I admire my children's desire to make a difference. I admire their hope. I admire their dedication.

A day-in-the-life of pride. I am proud of Bridget and Joe.

Wednesday, May 4, 2011

"May the Fourth Be With You"

So, did I ever tell you that the recessional at Dave's and my wedding was to the Imperial March ? You know Darth Vader's Theme Song...

Personally, I called it the "Death March" (that is a story for a different day though).

Nah... I don't think I have shared that before.

What about Dave's very Yoda-esque statement one evening when we decided to let a blood glucose of 220 "ride" without correction? Have I told you about that? I think I did during last year's Blog Week hosted by Karen at Bitter~Sweet (click here for details on this year's Blog Week, which starts next Monday, May 9th).

The quote...

"An A1C does not one high night make."

Deep, profound, and sleep allowing. We would not need to get up in 2 hours to recheck a bolused and potentially low Joe. Instead we got 4 hours of sleep to check a potentially even higher Joe, but it provided some much needed "sanity" and laughter in the moment.

Happy Star Wars Day!

No, I am not making this shit up. It is actually Star Wars Day. And. Believe it or not, I have even written a post about Star Wars and Diabetes...only me.

A Long Time Ago (like a year and a half ago)

In A House A Few Blocks Away (remember we have moved)

A Post Titled "Mom How Can I Win The Empire With You Checking Me"

Was Written by Yours Truly

And Then Rewritten Today

Weekend mornings are "hockey mornings" in the Maher home.

Joe has really shown an interest in this sport. He practices every Saturday and Sunday morning with the "Blue Crew." These practices have been a blood sugar buster. Not only is hockey an extremely physical sport, but practice times are rotated. Sometimes Joe eats breakfast before he goes to practice and sometimes he does not. As, I have mentioned time and time again Diabetes has an adulterous affair with "routine"... it loves it, it craves it, it wants it in the worst and most primal of ways.

I digress.


With the insulin on board from breakfast, Joe tends to go low even though many carb grams are given freely to boost him prior to practice.
Yesterday, I gave him a really low dose of insulin to cover his carbs for breakfast and he ran in the 300s and 400s during practice and after. So, when we got home I gave him a correction dose of insulin (only 1/2 the dose the pump recommended) to try to get his blood sugar (a 420) down.

A couple of hours later...

I go to check his number while he is playing Lego Star Wars on the X-box. He is using both hands on the X-Box controller. As I try to lance his finger, Joe emphatically states "Mom, I can't win the Empire with you checking me!"

A in-the-recesses-of-my-mind "for f*ck sake Joe" was muttered ... accompanied perhaps with a ever-so-slight eye roll, as a smile crossed my lips and face.

My response ... "Of course, Joe win the Empire" ..."just do it in a few minutes-OK?"

A couple of minutes later, Empire won and all, Joe did his blood sugar check. A 183 was obtained.

A day-in-the-life of recognizing that childhood trumps diabetes.

Tuesday, May 3, 2011

Not Even Close...

As my "network" of "D" friends expands, I am increasingly aware of type 1 deaths, diagnoses, and hospital admissions from low induced seizures and loss of consciousness. With each incident, I mutter sadly, quietly, and angrily, and pissed-offly in my head "yet one more reason why Insulin is not a CURE."

I pratically spit it, the statement.

I do.

Type 1 Diabetes is difficult, at best, to manage. It does not lend itself to being "controlled". It can kill. The medication used to treat type 1 Diabetes is insulin.

Insulin is a hormone.

Insulin can be deadly if too large of a dose is given. Insulin can cause seizures, coma, and even death. Insulin is the only treatment for type 1 diabetes. Without insulin, persons with type 1 diabetes die.

Diabetes affects EVERY organ system in a persons body. These people look totally "normal" from the outside, while this disease wreaks havoc on their vasculature and organs. Insulin is needed, not only as life support, but to temper the effects of high blood sugars on tissues, vessels, and organs.

Insulin is not a cure. It never will be.

It cannot be taken orally.

The acidity of the stomach destroys the proteins that "make-up" insulin and, consequently, render it useless. Insulin must be injected with a needle. It is give subcutaneously several times daily. It is give with food. It is given with high blood sugars. It is given as "basal", a maintenance dose so-to-speak. This, my friends, is no CURE.

Insulin must be administered to keep persons with type 1 diabetes alive. Without it, they would die. Prior to 1921, the year exogenous insulin was produced/discovered, a person with type 1 diabetes would die a death of "starvation," as their cells would be unable to utilize glucose as an energy source. The death was described as painful and agonizing and miserable between the unquenched thirst, the continual flow of urine, and the insatiable hunger ... to no end... well, there would be an end ... The End. "Life Support", it is. Again, A CURE, it is not.

Dosing is not simple. It is complicated.

It is not a medication where you can just "dose it" and "forget it". You administer it, you check on the effectiveness of that dose a couple of hours later by checking a blood sugar level. Needle after needle after needle is the life of a type 1 diabetic... around the clock ... hour to hour. Insulin is not a CURE.

The balance required in dosing insulin is tenuous.

If you give too much it can induce a low blood sugar reaction called "hypoglycemia" or an "insulin reaction". A low blood sugar is an immediate emergency and must be dealt with promptly. It can occur at any time. A low blood sugar can lead to seizures, coma, and/or death.


If you don't receive enough insulin over the course of several hours you can end up in Diabetic Ketoacidosis; this is a life threatening condition that requires medical attention immediately.


Finally there are the reasons we all do that we do. The reasons, and the list is long, as to why we attempt to keep "tight" control of blood sugars... the long term effects of diabetes... the "complications". High blood sugar levels affect blood vessels, organs, and nerves throughout the body. Retinopathy, neuropathy, nephropathy, and all the fucking "opathies" along with cardiac disease, peripheral vascular disease, and dislipidemias...and on and on ... are but a few of the consequences of diabetes. A CURE? Definitely not. Period.

Too much Insulin.... you fall victim to a low. Too little ... you are stuck chasing down a high. Not a CURE.

Activity, monthly cycles, stress levels, environmental temperatures, illnesses, and growth spurts must all be accounted for when administering insulin. Blood sugars are affected by all of these factors and by oh, oh ... so much more. Insulin is far from a CURE.

Insulin is not a CURE.

A CURE it is not.

A day-in-the-life of gratitude for Insulin .... yet hoping for a less laborious treatment regimen for type 1 diabetes. A CURE, this is not.

Thursday, April 14, 2011

"Marks", "Squirts", JUVIE, and PODs...

So, this post-concussive thing isn't working out too good around here.

I am finding Joe even more "work" as I am trying to keep him from tripping, careening, falling, or flying to the ground to smash his already damaged melon into the asphalt, dirt, wood chips... pick your poison... it is all dangerous to a concussed cranium.

As his body has slowed, interesting things have been discussed and divulged as his thoughts have time to stew. The discussions are particularly titillating on "Oscar's Business Walks".

During the "Business Strolls"...

Joe counts how many times he "marks", "squirts" (what is the difference?), and "pees", and well you know ... does the "big business". As we walk Joe continues to keep track and reports with each "mark", "squirt", and "real-business" the updated tally. I just "uhm" and "ahhh", not really listening, just waiting for the mother load of business so that we can head back home.

On our walk last night....

"So, am I to young to go to Juvie?", Joe sprang on me after a "mark, squirt...etc...tally update".

"What?" (dear God, seriously?)

"You know Juvvvie ... " (I guess the extra emphasis on the "v's" was employed to jostle my knowledge base) Joe then waits patiently for my response while he lets Oscar tangle himself on 30 feet of retractable leash.

"Ah, yeah ... too young"... I was not gonna go 'there' ... and I certainly don't wanna know why in the hell he is asking.

This morning, on another Oscar "Business" walk ...

Joe was talking about his tubing from his pump. Apparently it was giving him a "feel" in the "nether regions". I have never heard him complain about his tubing. It is all he has known since he was three years of age. So, I asked ... thinking he would answer "no"... I asked if his tubing bothered him. A simple "sometimes" was expressed in the soft-lisp-kissed-nasally voice.


"Yah know, there is a pump that doesn't have tubing." I then asked, "Would you want to try that sometime?"

"Sounds nice mom ... I think so ... maybe."

Wow... Not sure how I feel about this...

Pre-Ping, I wielded the Animas Insulin Pump like a pro while keeping up with an "On-The-Go-Joe". I could check the time, IOB (Insulin On Board), and bolus while Joe ran, slid, scootered... and ice skated. Not once was a site dislodged due to my pancreating feats and prowess.

The following depicts some of my adventures with a 3 year old, a 4 year old, and a 5 year old Joe (pre-Ping) ...

Time check on the slide...

Scootering down the street during a correction bolus...

The "traffic-cone-appendage-skateboard" incident....

Running down the street during an IOB check ... I didn't dislodge his site even though the tubing was as tight as my Jordache Jeans were in High School.

The seriousness of this conversation has not been determined. I am willing to look into it for Joe if he is, indeed, curious about the pod. I have heard that they get "knocked off" easily during high intensity sports like basketball. Is this true? And, I have also heard there is/was an IOB issue. Laura ... Lorraine ... Penny... anyone? I guess I am willing to think about it. Also, does anyone know if Dexcom is as close to coupling with Omnipod as they are with Animas? Another concern of mine for sure.

A day-in-the-life of wanting to lose the "leash".

Thursday, March 31, 2011

The ONLY Day-In-The-Life He Knows

It is 3:30 am.

I am up.

I am up for the day.

Sometimes my urge to write something down is so strong that I cannot go back to sleep after the 3am blood sugar check. This occurrence is relatively frequent, hence the "diarrhea" of my fingers.

The posted photo...the one that looks like a "great-now-I-gotta-make-up-the-grams-of-that-jelly-smeared-all-over-his-face" photo was what had me up and shuffling through a heap of old pictures that I have shoved half-haphazardly in a box. It is perfect for today's post on so many levels. It was taken "pre-diabetes", so no worries on the "carb-making-up". It was toast and jelly; the same thing Joe was munching on yesterday when he stated without emotion ... when he stated, matter-of-factly, that he hated diabetes. He continued on, void of emotion, that he hated everything about it. This picture represents a time before "D". Joe was two. Joe does not remember this picture. Joe does not remember a life where that jelly would not have to be "made-up" for in carb grams.

I help organize our JDRF Walk Kick-Off Luncheon each year.

This year, during the luncheon, we are going to be sharing how our "stories" are powerful tools in raising awareness about type 1 diabetes and ultimately, through the telling of our stories, the importance of a less laborious and rigorous treatment regimen and the need for a cure will be appreciated by the general public.

I asked Joe if he would like to talk at the luncheon about his life with diabetes.

His answer was, "What would I say? ..... I don't know what it is like."

I followed up with, "What do you mean Joe? How do you not know what living with diabetes is like? You have had it for four and a half years..."


"Mom, I know no different..."


*my spawn is "deep"*

My response was something like, "So, you don't feel like you can talk about life with diabetes because you don't know how it differs from a life without diabetes ... you don't remember what it is like to not have it?"

"Yes, exactly..." in a lightly kissed, lisp-y, nasally Joe voice.

Well, fuck-stix. (Is that a sentence? noun (x), finite verb (x) complete thought (x)).

I have thought about this very topic over the years. At diagnosis, people were even so bold as to state "... blah...blah...blahbitty...blah.... at least he will know no different". Yes, true. He won't...He knows no different. He does not know what it is like to sit down with a box of crackers or a sleeve of cookies. He does not know what it is like to eat a meal without piercing his finger with a needle beforehand. He does not know what it is like to play a sport without frequent blood sugar monitoring. He does not know what it is like to not fear a low. The list is infinite. The list is life-encompassing. The list is somewhat sad.

Not sure how I feel about all of this... yet.

A day-in-the-life of knowing nothing else for his day-in-the-life.