Always

As many of you know, my 7 year old son Joe has been living with type 1 diabetes for over 4 years now. He has been living with the rigorous daily regimen that "d" demands of him for over half of his short, sweet life.

Over the years I have been left to wonder when will Type 1 Diabetes in my son's life stop breaking, chiseling away at, wearing on, and weighing down my heart.


When will I stop grieving?

Will I always be one string of non-euglycemic numbers away from a minor melt-down?

I believe I still mourn the loss of Joe's beta cell function because he cannot just sit and eat crackers out of a box or cookies off of a plate "mindlessly". Carbs must be counted. The pump must be programed. Insulin must be delivered. Food must then be consumed. Not eating, once the insulin is administered, is not an option. Sadness ensues as I witness the wince cross Joe's face while I insert needles into his flesh for pump site changes and CGM insertions. The sadness comes not from the pain that I am causing him, but from his attempt to hide his discomfort and pain from me. He, in essence, is trying to protect my emotions by hiding his. And, again, grief weighs on my heart a bit more as Bridget and Joe put aside much of their chore money to "fund" a CURE, as Joe states "I just want diabetes to end". The heaviness in my chest stems from my lack of faith in a CURE for Joe. Sad. True.

Our journey of managing blood sugars from meal-to-meal is exhausting. Managing diabetes from activity-to-activity requires thoughtful planning and critical thinking. Tweaking pump settings and bolusing insulin from blood glucose number-to-blood glucose number demands continuous attention to detail. Diabetes care never ceases as it is with us every night, through our days, during holidays, during illnesses. It is with us every trip to the store, to the park, to the gas station. It is with us while we are driving. Our journey of delicately balancing judicious diabetes management in a young, growing, active child, while considering the psychosocial impact that this kind of tedious, rigorous, never-ending care demands of us ... that type 1 management demands of Joe ...will always demand of Joe is essentially unexplainable. However, I do try, here on Beta Buddies. I believe my flits (word? I dunno) with grief and sadness stem from the "never-ending-ness" of the care and the isolation that results from this sort of life. It is difficult to explain the routine, the regimen, the tweaking, the boosting, the sleepless nights to those that do not live it. At times, I feel alone....

At times, not only do I feel alone, but I feel there is a part of me missing. The part of me that used to be a good friend, that was a kind neighbor, that had the energy to be a thoughtful human being. You see, there are times that there is absolutely nothing left of me to give. I am spent. I am caught up in the numbers. I am tangled up in the psycho-social web of diabetes land mines. The sad thing is, many people don't get that the impact of 24/7/365 meticulousness and care can fuck with you. It saps your energy. It leaves you feeling depleted. There is rarely a break or reprieve. What gets to me the most is that I am only here to help shoulder the weight of "D" care for the short-term. It is Joe who will endure the enormity of it all for his lifetime.

For the most part .... I find I am fine. I have my chin up, with a smile plastered on my face. I suck it up, with a smile plastered on my face. I can "take it in the ass at the arts"...again, with a smile plastered on my face.

At times ... I still struggle... Tears. Isolation. Frustration.

Always ... Lora, Meri, and Donna, I "get it." Type 1 in our children's lives is a constant. It is not going away. Ever.

From the "Irony Of Time" ...

'Seconds, minutes, hours, days, weeks, months, seasons and years, funny how the "measures" of time all blur and meld together as one long stream. During them, you can suffer the most monumentally painful events in your life. Each minute seems an hour. Each hour seems a day. Each day a week. Each week a month...and so on. Four years ago today one dip of a stick into my son's urine changed my life, upheaved my family's life. It was one of those "clock stopping" moments. The type 1 diagnosis and it's sequella froze me in "time" for a bit. No matter how hard I tried to deny "It", no matter how hard I tried to ward "It" off, no matter how much I wanted to tell "It" to "go to hell" and to leave me, my family, and my baby Joe alone, "It" was there. "It" was going nowhere. Time had stopped. I was "stuck". "It" wasn't necessarily "d". I believe "It" to have been "grief".'

A day-in-the-life of understanding.

This Could Be Any One Of YOU...

"Reyna you will hear things out there that will make you angry."

When Joe's Endocrinologist said these words to me shortly after Joe was diagnosed, I had no idea what he was talking about. I was dealing with the down-and-dirty of diabetes care. The public perception of diabetes had not entered my conscience.






***

After school yesterday...

I slipped and slid as I carried the precariously lodged three-legged Vietnamese Bamboo Xylophone (don't ask, and thanks Sunshine Grandma) to the car for Joe.

I then slipped and slid my way back to Joe's backpack that was on the sidewalk in front of a massive snow-ice mound by his school.

I unzipped the backpack.

I looked for and found "Woodchuck".

I looked at Joe's daily diabetes log.

Damn, he has been high all day. Joe has a cold and has been running in the low 200s consistently for two days now.

We were planning on staying to play on the school's playground for an hour while Bridget had band practice. According to the log, Joe received a correction dose of insulin about an hour prior for a 331. I needed to check a blood sugar to ensure his "safety" while he played for the next hour or so.

I zipped up the "Woodchuck".

I slipped.

I slid.

I tripped.

I fell on the ice.

I cursed.

I got up and continued to paint my life with some more colorful descriptors as I headed over to Joe, who happened to be pulling a "Penguin Maneuver" as he sailed down the ice hill head first on his belly with a group of his friends.

He ran to me rosy-cheeked and smiling, as he removed his glove. I removed my gloves. I fumbled with the test strip container with my near-numb finger tips. Woodchuck sat on the snow covered ground as it provided me with my supplies. The glucometer readied. Cold tissue was lanced. Blood was expelled. Blood was wicked up the test strip. 5...4...3...2...1 and a 231 was obtained. Off he went...until the next blood sugar check that would take place in an hour, or so.

You see, here is the thing...

Living with type 1 in our lives hour-to-hour, meal-to-meal, activity-to-activity, blood glucose level-to-blood glucose level is difficult enough. It demands a "never-ending-ness" that many cannot wrap their cerebral gray matter around. When you see me at the park stabbing my kid's finger tips as he slides; or, when you see me measuring his food as I am driving down two lane highways; or, when you see me in my life-sized Pez Dispenser role "mother birding" Glucose Tabs into Joe's pie hole; or, when you see me spiking a juice and holding it to a limp-y, noodle-y, sweat-y Joe... or, when you see me rink-side, field-side, yard-side stalking a potentially low Joe...

Guess what?

This stuff is going on all.the.time.

Always.

Around the clock.

Day.And.Night.

24 hours a day.

7 days a week.

365 days a year.

There are no breaks.

Ever.

So, when I read something like this article written in the Santa Barbara Daily Sound, I feel my spirit, my energy level, my spunk deflate a bit. My "fight" for the "damage control", for the "setting the record straight" is sapped. I am simply tired physically and emotionally. I am left without much vigor by the end of the day for a retaliation. But, when I go back the following morning after a 4am blood sugar check to re-read this:

"A child who acquires type 1 is much different that an adult who acquires type 1. Maybe a child was born with a worse hand? Could a child’s diabetic situation arise from their parent’s decisions in life such as lack of activity and over consumption of processed sugars? If that is possible then maybe the child inherited genes that were mores predisposed to the condition. Or maybe it’s a combination of genes and lifestyle. Many researchers are claiming that childhood diabetes type 1 and type 2 could be related to excess sugar intake and a poor quality diet. Children consuming sodas, juices, milkshakes and candy in excess may be a big contributing factor in acquiring type 1 or type 2. A child who consumes these choices in excess and is more sedentary and has parents who are sedentary may just have the recipe for early onset diabetes of either type".

When I go back and read this, ... I get angry. Once again, misinformation is disseminated. Once again, we are left picking up the pieces. Once again, I am left shouting "DIET AND EXERCISE CANNOT CURE TYPE 1 DIABETES, NOR DOES THE LACK OF A HEALTHY DIET AND A LACK OF EXERCISE CAUSE TYPE 1 DIABETES!" Once again, I am left defending my son, Joe. My son was diagnosed with Type 1 diabetes when he was just over three years old. Soda had not passed his lips. Milk shakes, perhaps he had one or two...well a bite or two of one or two. Processed foods? Sure, some I suppose. Sedentary? I am unsure if he knows the definition of that word...it certainly could not be used in the same sentence or perhaps paragraph when discussing Joe's qualities.

Type 1 Diabetes is an autoimmune disorder in which a person's own body (white blood cells) attack the insulin producing cells (beta cells) in the Pancreas. To develop Type 1 Diabetes three risk factors must be present. They are inheritance (genetic), autoimmunity (self-allergy), and environmental damage (example: from a chemical or virus). So, in other words, a person must have the genetic "set-up" to be susceptible to the environmental stimulus (chemical or virus) in order for the autoimmune "attack" (self-allergy) on the beta cells of the pancreas to occur.

Clearly, Type 1 diabetes is on the rise. My hunch is it is related to the "environmental trigger" component...whether it be viral, chemical, cow milk exposure, vitamin d deficiencies...who knows? The research is still being conducted. Answers are still elusive. More questions arise. More research is initiated.

What I do know is that I need to raise my voice along with my friends. I need to speak up for Joe.

I need to speak up for you.

This could be anyone of you in my position. This could be your child. This could be your day-in-the-life.

A day-in-the-life of defending our day-in-the-life.

My Response To Ignorance: One Voice
Dear Mr. Wilcher

**********************************************************************
JUST IN: The RETRACTED STATEMENT By Dr. Wilcher...2/17/2011:

My sincere apologies go out to the type 1 diabetic community for the article I wrote that was published in the Daily Sound on Feb 16th, 2011.

The main intention of the article was to say that for type 1 or type 2 diabetics a lifestyle of healthy habits may significantly help their quality of life. My statements about excess sugar were meant to be directed toward type 2 diabetics, which has been linked strongly to lifestyle habits.

Type 1 and Type 2 diabetes are basically 2 different diseases. They both involve the pancreas and insulin, but the cause of the diseases are much different. Type 1 diabetes is clearly an autoimmune disorder with no known cause while type 2 diabetes is more of a metabolic issue. I can understand the frustration of type 1 diabetics being categorized with type 2 diabetics.

I am truly sorry for any pain I have caused any of you and your families. I know how hard it must be to have a child who is diagnosed with type 1 and knowing that you have done everything in your power to keep your child healthy.

I quickly scanned the article without giving it a thorough proofreading and I understand that some of the issues I addressed were misleading.

I should have written the article in a much different way, and I do apologize again. My intentions were to raise questions about lifestyle habits and how it can affect one’s lifestyle with these diseases. I hope we can all agree that healthier habits can help us live more full lives no mater what conditions we have.

Bob Wilcher is a Chiropractor and personal trainer in Santa Barbara, CA. He owns Killer B Fitness, a personal and group training studio also located in Santa Barbara, CA. You can contact him at www.killerbfitness.com or (805) 448-2222.

Hockey, Nordic Skiing, And An All You Can Eat Chinese Buffet

Well, fuck-stix (and "no" I don't know what a "fuck-stick" is...I just use the word sometimes...and actually, now that I typed it, I am afraid that some definitions are coming to mind and eww)!

Of course, he wants to skate.

I mean...

It is 6pm. He only played hockey for over two hours this morning. He only cross country skied for another 2 hours, or so. And. He just ate at an all you can eat Chinese Buffet for the love of God!

Yep...Let him skate (in "let him eat cake" kind of exuberant, exasperated mom-like voice)!!!!!

A snippet of our day via blood glucose levels, carbs, and activity is as follows:

5:17 am: BG 160 (Dexter is smooth at 151) ~ Joe wakes.

8:22 am: BG 156 (Dexter is smooth at a 160) ~ Holy "Great Basals Batman!" Joe eats a 32 carb gram breakfast of Honey Nut Cheerios (22 carb grams), 1/2 cup of milk (6 carb grams), and 2 Gummi Vitamins (4 carb grams). Do you find that even the vitamins taken into consideration in the carb counts is a little disturbing?

9:11 am: BG 323 (No Dexter...Joe hates the "feel" of Dexter in his hockey pants) ~ "Go to hell Breakfast spike...oh wait, please stay...I love you...you are a decent number for Joe to go into F-O-U-R hockey games with...MUAH...Muah...muah!" I do nothing with this number as Joe will skater 'er down. I did decrease his basal by 50% for 2 hours starting NOW.

10:14 am: BG 234 ~ End of game #1. I do nothing.

10:45 am: BG 148 ~ End of game #2. I do something...I pelt him with a Lindt truffle (5g) and a glucose tab (4g)

11:21 am: BG 86 ~ End of game #3. Ok, one more Lindt and a glucose tablet coming at you "Mother Bird Style Joe!"

11:57 am: BG 156 ~End of game #4. Joe thought he was low. I think he was just tired.

12:18 pm: BG 193 (Dexter is diagonal up at a 173) ~ Pre-lunch. We are now planning on going to a Winter Extravaganza organized by the PTO at Joe's school. There will be sledding, nordic skiing, fort building, snow shoeing, snow soccer, etc at this event. We decided to feed Joe the ... dunh..dunhhhh...dunnnnnnhhhh....the dreaded "blood sugar buster" Costco Pre-assembled Hamburger (37 carb grams). This little fucker causes Joe to hit the 300s about 2 hours after it hits his gullet. Dave and I thought this "bad boy" would help us "power through". A 50% basal reduction is initiated for four hours of duration for the Winter Extravaganza.

2:40 pm: BG 121 (Dexter is 151 double downing)~ After a good 40 minutes of Nordic skiing. 12 grams of fast acting carb is given. "Dexter" is still "double downing" (this means a rapid blood sugar drop) on us. I proceed as a full service beverage station (down to the holding of the beverage to his lips as he skis) and follow Joe around the course allowing him to sip freely on 50 carb grams worth of hot cocoa. Joe skied up hills. Joe skied down hills. Joe traversed the field several times. Joe looked like a human pretzel as he tried to climb snow boulders wearing the skis. Joe has a new "activity" to add to his repertoire.

*Pause *

(eyes rolling into the back of my head viewing gray matter as my fingers tap on the keyboard here)

4:04 pm: BG 196 (Dexter is 180 with a diagonal up)~ Let's just throw a Chinese Buffet in the mix for shits and giggles at this point. Ah ... yeah, we took him to an all you can eat Chinese Buffet people. Seriously, who in their right mind does this nonsense? He ate meat-like products, crab legs, butter, oranges, and a small ice cream cone. I cannot remember what I bolused him for here. There was a 50%/50% combo over 2 hours "going down" for the ice cream. Oh and I also bolused for an extra 25grams of carb for the hot cocoa given over the previous hour during Joe's ski expedition (I have found that I need to compensate, after the fact, for a portion of the free carbs given during an activity...this took me awhile to figure out).

5:34 pm: BG 89 (Dexter is smooth at a 102)~ Joe wants to lay the "smack down" on his mama on the rink. OK, combo bolus is now being cancelled. 12 grams of "free" carb is given.

6 pm: BG 100 ~ Oh...I.HOPE.THIS.GOES.WELL. I have never had Joe skate after a Chinese Buffet, as he has never had a Chinese Buffet!

6:37 pm: BG 64 (Dexter is 80 with a diagonal down) ~ Joe is laying on the ice, just for a couple of minutes though. After 16 grams of glucose tabs he is stick handling to victory...with Bridget as his team-mate.

7:08 pm: BG 125 ~ Night Joe! For as hard as Joe plays, he sleeps equally with as much vigor!

9:12 pm: BG 151 (Dexter with a 171 diagonal up) ~ A correction is given and I bolus for half of the carbs given on the backyard rink, essentially 8 grams are covered.

A great day indeed!!!

I am now on my knees praying to the Blood Sugar GODs Of The Night for euglycemic bliss.

A day-in-the-life of our day-in-the-life with Joe, who happens to have type 1 diabetes.