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".

Meanwhile...

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.

(*sigh*).

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!

$80.36...

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 ... at.each.and.every.one.of.the.30.some.odd.homes.on.our.street 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.

Elation...

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.

"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.

Anyways...

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.

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.

AND...

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.

AND...

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.