Chronicles of D-Boy and Ribbon

Now Hiring.....

2012-02-15T21:13:00.001-08:00

Being a (non or working) parent is exhausting enough.

School. Homework. Baths. Lectures. Chores. Hygeine. Sibling referee. Mentor. Chef. Hiney wiper. Dog tamer. Counselor. And so much more but my mush of brain can't think...

Add in nurse. Endo. CDE. RN. Insulin doser. Site changer. Dex calibrator. Basal adjuster. Bolus thinker. Low advisor. High ass kicker. And did I mention there is no shifts? Nope. This is a morning, noon, evening, graveyard job. With no breaks or calling out. Never. Ever.

Even if you work outside the home...yup. Nurse calls, child texts, constant worrying. Counting carbs and coming up with course of action for gym and track while managing a merchant account for your "otha job"..that shit ain't easy.

By the way there's no sleep. And growth spurts or sickness? Well that requires overtime. No additional pay but extra hours are available.

Oh and one on one adult time? Well it gets interuppted. Yea nothing like a beeping CGM to kill the mood.

Don't get me wrong the employer (CWD) is amazing. They make the job worth it every minute of everyday, but this shit ain't easy.

Did I say that?

Sometimes I repeat things by mistake.

I guess saying "check you sugar/dex" 15x a day gets you into that habit.

There's no preparing for this job. Mentally and physically its exhausting and you have to be IN it to WIN it.

And even then somedays it gives you a swift kick in the ass!

(Insert F bomb here).

While Diabetes doesn't offer insurance or a 401unk, it does come with the best co-workers ever.

My crew is amazing.

Moms, dads, people living with the D...they all kick ass and make the job a little easier and even sometimes a blessing.

But we could all use a break. Especially my baby...and hers....and his...and them.

Anyone know of a functioning pancreas in need of work?

Hiring. NOW.

I OWN It.......

2012-02-13T19:09:00.001-08:00

The chorus wasn't enough. Justice wanted a full song. So I sat with him and we collaborated.....

So here it is. Full video to follow. Fa sho.

"When I walk on by, My Dex starts to beep..dang Im high. I pump to the beat, walking down the street in my new tummietote, yeah! This is how I roll, skulls, camo skins outta control, Now I need sugar cause im going low.. And cause I own it I eat tabs on the go..

Girl look at that pancreas Girl look at the pancreas. It dont work...Girl look at that pancreas..It dont work!

When I walk in the spot, this is what I see, Everybody stops and they staring at my site I got a sensor in my arm and I ain't afraid to show it, show it, show it, show it...

I'm diabetic and I own it.

When I go play ball I rock a temp basal, When it gets kinda rough I check my pump for leaks ..This is how I roll, come on old site it's time to go! We headed to the buffet, baby don't be nervous....lots of carbs, so good.. just need to bolus!

Girl look at that pancreas, girl look at that pancreas....It dont work... Girl look at that pancreas, girl look that pancreas It dont work!

When I walk in the spot, this is what I see Everybody stops and they staring at my site I got a sensor on my arm and I ain't afraid to show it, show it, show it, show it

I'm diabetic and I own it!

Check it out Pump pump pump pump pump Do the pump man Yeah diabetic and I own it.

Girl look at that pancreas....It work out Girl look at that pancreas it dont work!

Yeah I'm diabetic now u know it!".

And He Knows It.....

2012-02-09T22:15:00.001-08:00

From a conversation about kids staring at his sensor, to this.....He amazes me daily.Seriously he needs a record deal asap!

A Repost - It's More Than Just a Number to Us.

2012-02-02T22:02:00.000-08:00

I wrote this post last year, and after having a crappy night with a bg of 360 and ketones of .8 it seems fitting to repost it. Truth always remains the same.

***************************************************

When I say Justice was 59, 200, 43, 499, 29, 113, 143, 178, most people see a number. Unsure sometimes whether its good or bad, or thinking "that's high." or "that's low".

A number for us is so much more. I hate to say it defines us, but it defines the moment. At that moment when we see a number pop up on the screen after just 5 seconds, its as if we feel a shift on our entire universe, that lasts way longer.

That moment changes things. It changes the way we react to what may have been a normal situation, may have been a fun time, or peaceful slumber. It changes the now of course, as if that number is out of the desired "range", then we must act on it without hesitation.

But that moment also changes how we see our future, our children's futures. Its what keeps us diligent, its what worries us and wont allow us to sleep, its what makes us act so aggressively and limit certain foods or other triggers.

Its what has me up right now at 2:40 am.

We had a number earlier, that I have seen before. Shit, I have seen lower. But the paleness of his face, the shaking of hands, the moaning in his voice is what made me have to stop and catch my breath. He was 59, Dex alerted, we gave juice. But then he started whining, saying he felt itchy, and tingly, crying that he felt like he was dropping more and more. So I checked him again, even though those 15 minutes that seem like an eternity weren't up.....39. I rushed to the cabinet and grabbed pixie sticks (we find these work great for J) I emptied a few in his mouth and looked in those big brown innocent eyes and saw it.

I saw him as a teenager having a low and no one was around. I saw him sleeping and dropping, and me rushing to his failing body to save him before it was too late,I saw him collapsing on the field at a college game. I saw things no mother should see. And all I could fucking do was pour sugar in his mouth.

When I see a low, I feel fear. I never freeze. I always react with haste, but the after thoughts sometimes consume me.

:
Symptoms you may have when your blood sugar gets too low include:

Cold sweats
Convulsions
Double vision or blurry vision
Fast or pounding heartbeat
General discomfort, uneasiness, or ill feeling (malaise)
Headache
Hunger
Irritability (possible aggression)
Nervousness
Shaking or trembling
Sleeping difficulty
Tingling or numbness of the skin
Tiredness or weakness
Unclear thinking

Sometimes your blood sugar may be too low, even if you do not have symptoms. If your blood sugar gets too low, you may:

Faint
Have a seizure
Go into a coma

Other symptoms that may occur with this disease:

Decreased alertness
Different size pupils
Dizziness
Hallucinations
Memory loss
Muscle pain
Paleness

Can you imagine seeing a number and seeing those things? Watching your child experience a handful and worrying about which others may occur? We can. We do. I am. I worry about him falling and hitting his head in gym, passing out on the way to lunch, we all worry about losing our kids in their sleep. Its beyond scary, it makes me question so much in my life. It make me angry, exhausted and so drained that I cant even just enjoy a moment anymore like I should.

And once that low is up, and things are steady...Diabetes decides to rear its ugly face again...cause you know IT NEVER sleeps.

Right now as I sit in bed, I am waiting for a correction to work. A dose of insulin to bring down, what I can only speculate is Justices liver kicking out glucose in a delayed reaction to that 39, which now has us at 350 at 2:30am.

Seeing those up arrows on his Dexcom, and knowing I cant just click a button and make it stop is terrifying. While there are less immediate risks with a high blood sugar, it makes us worry about our child's future. Will they have their eye sight? Their kidneys? Will they be able to conceive? Have nueropathy? Why do I have to sit in bed and wonder this about my 8 year old son! I should be enjoying him sleeping with me, and his snores, I should be laughing at how him and his brother fight all day but now are snuggled up beside me. But I cannot. I am crying. I am scared that these times will change something in the future, that they will not allow him to be all I know he can and should be!

A high blood sugar level itself is a symptom of diabetes. However, an individual experiencing hyperglycemia may have no symptoms at all.

Common symptoms can include:

Dry mouth
Thirst
Frequent urination
Urination during the night
Blurry vision
Dry, itchy skin
Fatigue or drowsiness
Weight loss
Increased appetite

If hyperglycemia persists for several hours and leads to dehydration, other symptoms may develop, such as:

Difficulty breathing
Dizziness upon standing
Rapid weight loss
Increased drowsiness and confusion
Unconsciousness or coma

Left untreated, hyperglycemia can lead to a condition called ketoacidosis, also known as diabetic ketoacidosis (DKA) or diabetic coma. This occurs because the body has insufficient insulin to process glucose into fuel, so the body breaks down fats to use for energy. When the body breaks down fat, ketones are produced as by-products. Some ketonesrehydrated, and adequate insulin action is restored, ketones remain in the blood. Ketones in the blood cause nausea, headache, fatigue, or vomiting.

Ketoacidosis is life-threatening and demands immediate treatment.

Symptoms include:

Shortness of breath
Nausea and vomiting
Dry mouth
Breath that smells fruity
Stomach pain

Yea. That high number isn't JUST a number. Its not just give him some insulin and that's that. If only it was that simple. The complexities, variables and other components of this disease are mind boggling, and heart breaking.

While we must bite our lip, swallow those tears and administer insulin or sugar as if its "normal" and worry about the above things that can happen right NOW, we must also think of their futures..

The long term effects of low blood sugars haven't been documented yet but its said that nerves in the brain are damaged and brain cells die with each low. That statement alone is scary enough without further assessment. But its the right now of a low that keeps us up at night. The scariest of all being Dead In Bed Syndrome.

And high blood sugars.

Shit. That's all we hear. About amputations, blindness, and transplants. But did you ever wonder why? or how? Well they hammer into our heads LOWER A1C, high blood sugar= complications such as:

Cardiovascular disease
Nerve damage (neuropathy)
Kidney damage (nephropathy) or kidney failure
Damage to the blood vessels of the retina (diabetic retinopathy), potentially leading to blindness
Clouding of the normally clear lens of your eye (cataract)
Feet problems caused by damaged nerves or poor blood flow that can lead to serious infections
Bone and joint problems, such as osteoporosis
Skin problems, including bacterial infections, fungal infections and nonhealing wounds
Teeth and gum infections

So while making sure our children do not drop dangerously low, to ensure they are here to see another tomorrow, we must also keep them from going to high, and securing their future..NOW.

What they don't tell you is that these numbers aren't predictable. Not just food, exercise or insulin can cause a low or high. But stress, excitement, sickness, hormones, every single thing that you and I consider part of being a kid, or just human, can cause a chain reaction in blood sugars such as the ones I shared with you here.

Seems like alot to take in don't it? When I saw that 39 and 350 tonight, that's what I saw. All of the above.
I wrote this post last year, and after having a crappy night with a bg of 360 and ketones of .8 it seems fitting to repost it. Truth always remains the same.

***************************************************

When I say Justice was 59, 200, 43, 499, 29, 113, 143, 178, most people see a number. Unsure sometimes whether its good or bad, or thinking "that's high." or "that's low".

A number for us is so much more. I hate to say it defines us, but it defines the moment. At that moment when we see a number pop up on the screen after just 5 seconds, its as if we feel a shift on our entire universe, that lasts way longer.

That moment changes things. It changes the way we react to what may have been a normal situation, may have been a fun time, or peaceful slumber. It changes the now of course, as if that number is out of the desired "range", then we must act on it without hesitation.

But that moment also changes how we see our future, our children's futures. Its what keeps us diligent, its what worries us and wont allow us to sleep, its what makes us act so aggressively and limit certain foods or other triggers.

Its what has me up right now at 2:40 am.

We had a number earlier, that I have seen before. Shit, I have seen lower. But the paleness of his face, the shaking of hands, the moaning in his voice is what made me have to stop and catch my breath. He was 59, Dex alerted, we gave juice. But then he started whining, saying he felt itchy, and tingly, crying that he felt like he was dropping more and more. So I checked him again, even though those 15 minutes that seem like an eternity weren't up.....39. I rushed to the cabinet and grabbed pixie sticks (we find these work great for J) I emptied a few in his mouth and looked in those big brown innocent eyes and saw it.

I saw him as a teenager having a low and no one was around. I saw him sleeping and dropping, and me rushing to his failing body to save him before it was too late,I saw him collapsing on the field at a college game. I saw things no mother should see. And all I could fucking do was pour sugar in his mouth.

When I see a low, I feel fear. I never freeze. I always react with haste, but the after thoughts sometimes consume me.

:
Symptoms you may have when your blood sugar gets too low include:

Cold sweats
Convulsions
Double vision or blurry vision
Fast or pounding heartbeat
General discomfort, uneasiness, or ill feeling (malaise)
Headache
Hunger
Irritability (possible aggression)
Nervousness
Shaking or trembling
Sleeping difficulty
Tingling or numbness of the skin
Tiredness or weakness
Unclear thinking

Sometimes your blood sugar may be too low, even if you do not have symptoms. If your blood sugar gets too low, you may:

Faint
Have a seizure
Go into a coma

Other symptoms that may occur with this disease:

Decreased alertness
Different size pupils
Dizziness
Hallucinations
Memory loss
Muscle pain
Paleness

A high blood sugar level itself is a symptom of diabetes. However, an individual experiencing hyperglycemia may have no symptoms at all.

Common symptoms can include:

Dry mouth
Thirst
Frequent urination
Urination during the night
Blurry vision
Dry, itchy skin
Fatigue or drowsiness
Weight loss
Increased appetite

If hyperglycemia persists for several hours and leads to dehydration, other symptoms may develop, such as:

Difficulty breathing
Dizziness upon standing
Rapid weight loss
Increased drowsiness and confusion
Unconsciousness or coma

Ketoacidosis is life-threatening and demands immediate treatment.

Symptoms include:

Shortness of breath
Nausea and vomiting
Dry mouth
Breath that smells fruity
Stomach pain

Cardiovascular disease
Nerve damage (neuropathy)
Kidney damage (nephropathy) or kidney failure
Damage to the blood vessels of the retina (diabetic retinopathy), potentially leading to blindness
Clouding of the normally clear lens of your eye (cataract)
Feet problems caused by damaged nerves or poor blood flow that can lead to serious infections
Bone and joint problems, such as osteoporosis
Skin problems, including bacterial infections, fungal infections and nonhealing wounds
Teeth and gum infections

You see a number, for us its so much more.

This isn't just a single moment, but each moment. Each check, each reading, this is what we see. Everytime I look into those gorgeous eyes, or feel his hug, or hold his hand during another battling low or raging high....

You see a number, for us its so much more.

A Repost -- It's not just a number.

2012-02-02T21:57:00.001-08:00

I wrote this post last year, and after having a crappy night with a bg of 360 and ketones of .8 it seems fitting to repost it. Truth always remains the same.*************************************************** When I say Justice was 59, 200, 43, 499, 29, 113, 143, 178, most people see a number. Unsure sometimes whether its good or bad, or thinking "that's high." or "that's low".A number for us is so much more. I hate to say it defines us, but it defines the moment. At that moment when we see a number pop up on the screen after just 5 seconds, its as if we feel a shift on our entire universe, that lasts way longer.That moment changes things. It changes the way we react to what may have been a normal situation, may have been a fun time, or peaceful slumber. It changes the now of course, as if that number is out of the desired "range", then we must act on it without hesitation.But that moment also changes how we see our future, our children's futures. Its what keeps us diligent, its what worries us and wont allow us to sleep, its what makes us act so aggressively and limit certain foods or other triggers.Its what has me up right now at 2:40 am.We had a number earlier, that I have seen before. Shit, I have seen lower. But the paleness of his face, the shaking of hands, the moaning in his voice is what made me have to stop and catch my breath. He was 59, Dex alerted, we gave juice. But then he started whining, saying he felt itchy, and tingly, crying that he felt like he was dropping more and more. So I checked him again, even though those 15 minutes that seem like an eternity weren't up.....39. I rushed to the cabinet and grabbed pixie sticks (we find these work great for J) I emptied a few in his mouth and looked in those big brown innocent eyes and saw it.I saw him as a teenager having a low and no one was around. I saw him sleeping and dropping, and me rushing to his failing body to save him before it was too late,I saw him collapsing on the field at a college game. I saw things no mother should see. And all I could fucking do was pour sugar in his mouth.When I see a low, I feel fear. I never freeze. I always react with haste, but the after thoughts sometimes consume me.:Symptoms you may have when your blood sugar gets too low include:

Cold sweats
Convulsions
Double vision or blurry vision
Fast or pounding heartbeat
General discomfort, uneasiness, or ill feeling (malaise)
Headache
Hunger
Irritability (possible aggression)
Nervousness
Shaking or trembling
Sleeping difficulty
Tingling or numbness of the skin
Tiredness or weakness
Unclear thinking

Sometimes your blood sugar may be too low, even if you do not have symptoms. If your blood sugar gets too low, you may:

Faint
Have a seizure
Go into a coma

Other symptoms that may occur with this disease:

Decreased alertness
Different size pupils
Dizziness
Hallucinations
Memory loss
Muscle pain
Paleness

Can you imagine seeing a number and seeing those things? Watching your child experience a handful and worrying about which others may occur? We can. We do. I am. I worry about him falling and hitting his head in gym, passing out on the way to lunch, we all worry about losing our kids in their sleep. Its beyond scary, it makes me question so much in my life. It make me angry, exhausted and so drained that I cant even just enjoy a moment anymore like I should.And once that low is up, and things are steady...Diabetes decides to rear its ugly face again...cause you know IT NEVER sleeps.Right now as I sit in bed, I am waiting for a correction to work. A dose of insulin to bring down, what I can only speculate is Justices liver kicking out glucose in a delayed reaction to that 39, which now has us at 350 at 2:30am.Seeing those up arrows on his Dexcom, and knowing I cant just click a button and make it stop is terrifying. While there are less immediate risks with a high blood sugar, it makes us worry about our child's future. Will they have their eye sight? Their kidneys? Will they be able to conceive? Have nueropathy? Why do I have to sit in bed and wonder this about my 8 year old son! I should be enjoying him sleeping with me, and his snores, I should be laughing at how him and his brother fight all day but now are snuggled up beside me. But I cannot. I am crying. I am scared that these times will change something in the future, that they will not allow him to be all I know he can and should be!

A high blood sugar level itself is a symptom of diabetes. However, an individual experiencing hyperglycemia may have no symptoms at all.

Common symptoms can include:

Dry mouth
Thirst
Frequent urination
Urination during the night
Blurry vision
Dry, itchy skin
Fatigue or drowsiness
Weight loss
Increased appetite

If hyperglycemia persists for several hours and leads to dehydration, other symptoms may develop, such as:

Difficulty breathing
Dizziness upon standing
Rapid weight loss
Increased drowsiness and confusion
Unconsciousness or coma

Ketoacidosis is life-threatening and demands immediate treatment.

Symptoms include:

Shortness of breath
Nausea and vomiting
Dry mouth
Breath that smells fruity
Stomach pain

Yea. That high number isn't JUST a number. Its not just give him some insulin and that's that. If only it was that simple. The complexities, variables and other components of this disease are mind boggling, and heart breaking.While we must bite our lip, swallow those tears and administer insulin or sugar as if its "normal" and worry about the above things that can happen right NOW, we must also think of their futures..The long term effects of low blood sugars haven't been documented yet but its said that nerves in the brain are damaged and brain cells die with each low. That statement alone is scary enough without further assessment. But its the right now of a low that keeps us up at night. The scariest of all being Dead In Bed Syndrome.And high blood sugars.Shit. That's all we hear. About amputations, blindness, and transplants. But did you ever wonder why? or how? Well they hammer into our heads LOWER A1C, high blood sugar= complications such as:

Cardiovascular disease
Nerve damage (neuropathy)
Kidney damage (nephropathy) or kidney failure
Damage to the blood vessels of the retina (diabetic retinopathy), potentially leading to blindness
Clouding of the normally clear lens of your eye (cataract)
Feet problems caused by damaged nerves or poor blood flow that can lead to serious infections
Bone and joint problems, such as osteoporosis
Skin problems, including bacterial infections, fungal infections and nonhealing wounds
Teeth and gum infections

You see a number, for us its so much more.

Its Not The Why, But The How....

2012-01-29T17:40:00.001-08:00

How I can sit quietly, and allow the judgement, ignorance, misconceptions and false information to continue?

How can I pretend that a war is not raging in my child's (and husband, father, granny and friends) body everyday.

How can I ignore the fact that 35,000 a year are diagnosed with Type 1 YET doctors still miss the signs, and people are dying due to misdiagnosis?

How can I not educate others that Type 2, is NOT just a "lifestyle" disease?

How can I not worry for my son's future and yours?

How can I ignore that children are dying in their sleep due to low bgs?

How can I not be scared that the un-insured will die because they can't access the simple supplies they need to stay alive?

How can I not be the shoulder that another needs to lean on in time of hardship and sadness?

How can I not make it my business to empower my son with not only the tools he needs but the confidence to get through the day?

How can I not point out the media's mistakes and let them know the real facts?

How can I not stand up for what I know is right, for people I adore, respect and admire?

How can I pretend Diabetes is no big deal?

I can't do any of these things.

I won't.

I refuse.

Its not easy, I still cry, I still get burnt out, I still pray everynight this is a bad dream and a cure is right around the corner, I still wonder somedays why my family was chosen to fight this fight.

But I take a deep breath, look into those deep brown loving eyes, and I know its not the why that matters, but the how.

We Lead The Way.........

2012-01-28T07:07:00.001-08:00

A Cure vs Awareness.

Why?

Both are needed, both go hand in hand.

How?

Well here is how I see it.

The media keeps pushing that diet, exercise and a healthy lifestyle can PREVENT AND OR CURE diabetes.

False.

While SOME cases of Type 2 can be affected by lifestyle (so many other factors are relevent) that is NOT the end all be all in reasons for type 2 diabetes, and it isn't a factor at all in type 1.

How do I know? My father, who is thin, active, and eats healthy was diagnosed type 2 with a fasting bg of 200.

My 9 year old son as you all know was diagnosed with Type 1 with a bg of 510, and he was thin and still is.

Misconceptions.

If the world continues to think no carb diets and a treadmill are going to prevent and cure diabetes of ANY kind, we will NEVER see a cure.

Why would we?

Diet and exercise is cheap! We can do that on our own, who needs a bona-fide cure!?

So awareness leads the road.

Facts. Myth busting. Our stories. Our childrens stories. Support.

If we continue to play the blame game of T1. Vs T2, JDRF vs. DRI, Awareness vs a Cure we will never get where we need to be.

We will never get the attention, respect and support that we need to reach our goal of a cure.

I want a Cure more than anything in the world, health is most important to me, for all of my family, my type 1 son AND my type 2 Husband.

I have recently heard close family members say "some case of diabetes can be cured naturally, and weaned off insulin".

While of course this breaks my heart and makes me want to drop more F bombs than normal, I don't. I keep educating. I keep advocating. I continue blogging, sharing YOUR blogs, your tweets.

Reaching one person, and helping them see the truth about this disease is huge.

For they will inevitably reach one person, and the domino effect will continue.

I believe a cure will come. I believe I will be standing with the best of them (Penny, Laura, Wendy, Dana, Diane, Lori, Stacey, Gina, Susan, Tony, Scott, Mike, Liz, to name a few), and we will know that our endless efforts contributed in some way to where we are.

So we must stop the fighting, the blaming , and the this vs that, or us vs them.

Turn your platform into a stepping stone to a higher platform, if you believe in your mission, it can be done.

So I will advocate day in and day out, until my fingers blister, mouth is dry and feet are bruised from my 6 inch Blue stillettos.

I am grateful to be doing so alongside YOU.

On The Right (GI) Track...

2012-01-22T10:26:00.001-08:00

*****Update*****

Justice's labs were negative for celiac as many of you know, but our endo wanted to do a scope to be certain.

We met with the GI doctor last week, and OMG I love him. He not only asked about J but about MY issues, saying sometimes these things are genetically linked.

He asked if J's Diabetes was under control (hate that word) and I gave my normal response "Well as you know Justice has type 1 diabetes, insulin is tricky...so controlled isn't the word I use but we manage it pretty good! His A1C was 6.5". I waited for the response I usually get from everyone besides our endo "hmm that's a high A1C". The I explain well its not "normal" hence...the diabetes!

But he turned around, patted J on the back and said "good job!".
Score points for him.

We then started talking scope, he said if he doesn't have to do something invasive he rather not. He explained that there is a blood test that actually tests for the genetic markers for celiac, he said its very accurate, and a lot of GIs don't suggest it because its pricey as is all genetic testing.

We even talked about stool samples which can be used to test for celiac as well.

So tomorrow we head to the lab for the genetic marker test (lamens terms), and take it from there.

He suggested some Fiber pills for J as well, saying that could be a source of his issues. We eat tons of fruits and veggies, but apparently the fiber pills can help balance the fiber so there's no gas or diahrrea.

I have started a low residue diet , and have put J on a conservative low res diet and so far...much better!

Seems I passed on my *shit* to him.....sorry couldn't resist.

So here we are, prayers appreciated!

I am headed to NY in Feburary for extensive testing with a nutrionist as well, hoping to get some answers. (Email me if you wanna come to our DOC meet up!)

So as my BPFF says... "keep calm and carry on".

A Repost. I Miss It...

2012-01-15T17:28:00.000-08:00

I posted this over. 6 months ago....I guess being back to work fulltime and working opposite schedules of Biggah is taking an emotional toll.

Why reblog? This says it all...

I'm not sure where this all came from. All these feelings are pouring out me and I cannot contain them. This started as a post for my other blog, and then became THIS. Since I cannot discuss D on the other blog, here I am.

I was originally just writing a post on how much I love my boys. How although sometimes I am like please leave me be, I need a break, I cannot imagine life without them. I already posted today on how I miss my husband, its written over there.

I am tired all the time. So hence I have less patience. If Justice comes and says "Mom, I'm low", or "Mom, Dex is alerting high", or its time for a bolus, or site change, or one of the other trillion things Diabetes demands of me I CANNOT say, "not now". So I find myself saying this at other times.

It makes me fucking sad. I am mad. I am angry as fuck that I am so drained. I want to just be MOMMY! I want to just be the funny, crazy, mama who who would have burping contests, dance and jump on the bed until our legs hurt, chase them around the house until they would laugh to tears, eat big bowls of ice cream in bed and watch movies.

These things are not as easy now. ~~Eating~~ everything requires bg checks. Jumping on the bed, now always turns into a terrible low and a drained Justice. You cant plan when to jump on the bed ya know? Load up on carbs set a temp basal and then we can jump. Get the fuck outta here. Wheres the spontaneity in that?

I miss things. I miss life before 10/21/08. Not all of it. But most of it. (I don't know what I would do if I never met my amazing DOC friends, you have all become family and that for I am forever grateful).

I miss life before it began....

Justice Love born 10-17-02

Synsyre Love born 4-8-05

Justice at almost 2

Synsyre at 2

Summertime fun Justice at 5

Synsyre 3, Justice 5 and mommy in love

He is such the lil lover; Synsyre

Jumping up down, no worries of a low

Synsyres birthday, baking a cake, no worries of a high.

Our 1st vacation as a family, just 8 weeks before dx

Enjoying just being...

Not a care in the world.

Justices 6th bday, 4 days pre dx.

What I wouldn't give to go back in time and tell myself "CHERISH EVERY MOMENT". All of it. every spill, every boo boo, every cold, ever morsel of foods, every moment of swimming, every simple stomach virus, every night of sleep.

Things you didn't realize mattered before, or you just considered a normal part of your day, are now things I yearn for. Things I wish I could experience again.

If just for one day. Id like a day with no D. A day for me and my boys to just have fun, laugh, love, and not have to stop!

I haven't had a day like this in a long time, and I'm sure the lack of sleep this week (more than usual) is making me way more emotional than usual, but this is how I am feeling right now.

I miss life..before IT began.

The Anatomy of a D-Mom.

2012-01-07T09:38:00.001-08:00

There is so much more to us D-Moms than meets the eye.

Consider this D-Mom class 101.

The Brain : Used to calculate radical mathematic equations and factors in order to properly dose a (imperfect, dangerous at times) hormone, all while assessing everyday factors that may change at any moment. Normally done by a working pancreas.

The Heart : Open, always accepting, never judging. Loving each and everyone of you. Unconditionally. Giving all she has to her child, and family. Never giving up, never accepting defeat, driven by passion, fueled by love and operating on all the hope and beauty she sees in her children.

The Eyes : Used to spot the shakes, sweats, dilated pupils, pale skin, wobbly legs caused by a low blood sugar, or to spot an irritated, distracted, frustrated, nauseated child who is experiencing a tummy ache due to a high blood sugar.

The Ears : To hear Cgms alarming, pumps beeping, children screaming my site came out, or I'm looooooow. Always listening for the ring of a cell phone during school hours. Also used to listen to fellow members of the DOC, whenever needed.

The Nose : Used to sniff out the insulin that is dripping from a faulty site, which if not remedied quickly can cause ketones, DKA and take a turn for the worse rapidly.

The Mouth : Used to speak up, advocate, give words of encouragement, rally the troops and fight for all of the community. Can also be used to holler at hubby for a juice at 3am from the bedroom.

Shoulders : Used to allow others to rest their head, to lean on, to comfort and give support to those in need.

Arms : To lift up when feeling defeated by D, to hug a low/high child and let them know they are never alone, and we will always be there. To give virtual hugs over blogs, twitter, FB, at all times of the night.

Hands : Used to change sites, sensors, cartridges, batteries, log numbers, check blood sugar, administer glucagon, wake a sleeping child, weigh foods, and all else food, carb, life saving related.

Fingers : To blog, tweet, FB, text, IM and all other forms of communication used to push forth our efforts not only to support one another but to advocate on behalf of all those living with and affected by Diabetes.

Elbows : Used to knudge spouse to get up, its his turn to check a bg, or we just are too tired and need their assistance.

Stomach : One cannot have a weak stomach when dealing with Diabetes. Your stomach will turn, it will hurt, it will feel uneasy waiting for that number on the glucometer at 1am, or when the endo gives you that "dreaded" A1C.

Legs : To walk. March. Run. Bike ride. For a cure. For awareness. Also used to march onto the steps of congress, city halls, etc fighting for our children, and loved ones affected by Diabetes.

Knees : Used to kneel down and pray. Anytime of the day or night, when we need G-D to hear our prays for a CURE. Can also be used to check a blood sugar on a playing child or to pick up strips off the floor.

Feet : Used to rock some kick ass Blue Heels (shoes) in an effort to advocate and show support for the community. Used to stand up and say "INVISIBLE NO MORE". To honor those living with Diabetes, who from the outside may look "fine" but are everyday fighting within.

We use every part of our body, every minute of everyday.

You may not be able to see it, but like Diabetes, its there.....

Getting To The Bottom, of The Bottom Issue...

2011-12-27T18:09:00.001-08:00

Sigh.

Why must these things take so long.

Today Justice's CDE let me know that his celiac and thyroid panel were all normal---yay---or crap?

We still have NO idea what is causing the tummy issues. Lows are better, and so is gas, but now we have stool issues.

Yes. TMI ahead.

The other night my baby was in the bathroom for almost 2 hrs hunched over in pain.

His stool looks like oatmeal or as my homegirl Wendy put it, "sawdust".

Sometimes you can see the food is not digested.

As someone who suffers from FOUR food allergies (wheat, gluten, dairy and CORN), I have seen this before.

I know something is wrong.

Luckily our amazing endo agrees. She has set up an appt for J at the GI doctor in 2 weeks. My understanding is she is pushing for a scope, because labs do not always detect celiac till much later.

So we are still in the same place minus the lows, and stink.

While I of course do NOT want my baby to have celiac, I really want an answer other than "IBS".

Hopefully we are almost there.....

It Changes Things.....

2011-12-17T16:08:00.001-08:00

I'm sure you've noticed.......

I've noticed.....

He's noticed......

So has she....

I assume they can see it too......

It started on October 21, 2008.

The devasting news that MY child, my just turned 6 a few days before, my bubbly, energetic, funny, active, healthy, son was in DKA.

It wasn't just the flu, but something more dangerous and life altering than I could ever imagine.

Our vacation of a week turned into 2 weeks in the hospital learning how to keep our child alive.

I went through the motions, absorbed what I needed to do to make sure he was safe, and blindly went on with the rest of our lives.

I didn't know about the Diabetes Online Community (DOC) , I didn't know about CGMs, pumps, blood ketone meters, Dead In Bed, and that an A1C could even be under 8.

I knew Type 1 was serious but I didn't know HOW serious.

I didn't know of the ignorance, and myths that surrounded this disease.

I didn't realize that children were dying because they couldn't access insulin, or due to a low in their sleep.

I just didn't know.

And then I learned.

I learned that there was more to this disease.

Not just small things but life changing, monumental facts that would one day save MY son.

I found a community that needed me as much as I needed them.

There were walks to be walked, supplies to be donated, books to be read, hands to be held, tears to be wiped and even laughs to be laughed.

I found HOME.

A place where everyone understood what we were going through, a place where we were welcomed without question and loved without judgement.

But I somehow lost something too.

Not because of the DOC, but Diabetes.

I feel at times so defined by it, defined by the numbers, the equipment, the insurance worries, the neverendingness of it all.

How dare I say that when its not my disease?!

I feel Justice has days like that too, but for the most part he is just being a kid, which is how it should be.

But as his mother and well pancreas how do you seperate Diabetes from everyday life?

Can it be done?

Should it be the topic of every conversation with my husband?

Should it be what I dream about?

Should it dictate every decision and how I interact with people?

NO. It shouldn't.

But it does.

No matter how hard you try, you know there is a disease living inside YOUR child, that can take their eyes, legs, heart, feet, and yes their life.

So while I try not to let Diabetes define or dictate how I live, I find it impossible when I know my son LIVING depends on it.

JDRF Walk 2011

2011-12-16T23:46:00.001-08:00

How did I miss posting on this?! I swear there are NOT enough hours in the day.

As many of you know this was my first year as the JDRF Family Walk chair and it was amazing! I truly adore our JDRF chapter, they have done so much for my family, I love them.

To go into full deets would take forever so here's the short story.

We had about 20 walkers and met our goal of $1000! I am very happy with that. Our chapter together raised $560,000!!

For. A. Cure.

That makes my heart swell with happiness!

This years walk was especially awesome because we focused a lot on awareness.

There were buttons given out with facts about Type 1 Diabetes, and all the volunteer's shirts had them as well.

Awesome!!

This is also where I got to display my faces of Diabetes project! So thank you to everyone who participated, it was an amazing thing to honor you all at our walk.

Oh! And Justice and fellow Youth Ambassador cut the ribbon again this year, so cool!

We also got to hang with Rachael from Life with Elyssa, and Type 1 Diabetes! (I love her btw!)

There's are so many more details but I am beat! So I will leave you with some amazing pics.

Happy BGS!

A New Level Of Low, at The Endo....

2011-12-14T17:58:00.001-08:00

Today was our 4 month endo appointment for D-Boy (Jus), and follow up appointment for Ribbon (Syn).

I was actually anxious. Not like A1C anxious, but "PLEASE HELP US." Anxious.

The lows. They're kicking his (our) ass.

I haven't seen a meal spike in 2 weeks. I haven't seen a low come up in appropriate time, in 2 weeks. I haven't seen the back of my eye lids, in 2 weeks.

The gas..well y'all remember we discussed the gas on my last post.

So we went in. Ready as ever.

D-Boy was a nice 140 flat when we left the house, by the time the car pulled in to the parking lot, he was 76. Ok. A boost coming up!

About 20 min elapsed, and we were in the nurses office ready for his bg check (routine) A1C (routine), and weight/height (routine).

Weight? 96 lbs.
Height? 4ft8 (OMG. My baby).

BG? 51! He then said oh yea Dex said double down. Well shit on a motherfuckin stick.

Juice, and granola bar coming up. (60gc).

They then squeezed some more blood to run the A1C.

We headed back to the room to wait for our AMAZING endo.

His pump is off at this time so they could download it mind you, and bg is at 57, 20 minutes later.

UGH! He looks pale, awful. Normally I woulda waited to give him the granola bar but he was starving from the lows. He wanted to just eat so I let him.

In between all this the nurse told me his A1C was 6.3---I didn't even have to register it really. I do know that is NOT from lows, the last 2 weeks is not the norm here, so I patted myself, Dad, and J on the back and kept moving.

I walked outside and told the endo for the first time in 3 years "Help me. I am lost. His bg won't come up. This is day 13!".

She looked at me with such concern and love, "You have his glucagon, or do you need one? Let's do a mini gluc now!".

I had mine, so I did it. We decided on 3 units to help push the bg up.

When I walked in and told him (and Dad) what we were doing he lifted his sleeve and said "Yes!!! Finally! Enough of this!".

30 minutes later he was 80, 87 diagnol up.

Ok. We will take it.

Endo, myself and dad went over logs, numbers, gas issues, basals, ISFs everything....she said "I agree. We need to rule out celiac".

So we will do labs tomorrow, if positive, I am not sure...BUT if negative she may still order a scope to be sure. She said not all labs show up as postive and with these symptoms we need to be really sure.

As she was writing the rx for labs I was looking over the print out from the pump, numbers, lowest, highest, standard deviation, etc. I was really happy with everything.

Then D-Boy said "Is this like a grade?!". I started explaining no good or bad #s, blah blah, when Endo cut me off.

"Grade? NO. Its your body doing all this crazy stuff. NOT you. Unless I find out your eating food without bolusing, we are A ok!". I LOVE HER.

So here we are. Labs tomorrow. Prayers. Deep breathe.

As for Ribbon, all looks good!! No more maturity in any way, so she is ruling out CAH. We will retest once a year to ensure levels stay where they are or come down. Adrenal tests were all normal so it could just be that he has a higher hormone level than other kids. But nothing to worry about.

Shaaaawwweeet!!!

So now we test and wait.

And in the mean time all basals are down by .05, ICs are largest they have ever been (large meaning waaay less insulin), ISF is higher and she changed his target from 115 to 125 for now as well.

The low from the office ended up rebounding 3 hours later to a 359. Half a correction, and he's now 67, 98 double down.

Its gonna be a looooong night......

I Dont Wanna Play This Game!

2011-12-08T07:47:00.001-08:00

He's low.

I'm low!

Mom. Low!

Babe, low!

Mrs. Newell, he's low AGAIN.

Dexcom arrow down.

His CGM said two arrows down Alexis.

------STOP------TREAT------REPEAT.

Almost 5 days of this.

I've done basal changes, I have done temp basals of minus 50%, and still low.

If not low, just not spiking at all. Which is great! But unusual.

How can he eat 60gc and have a reduced basal, and still NOT be over 85?!

We never honeymooned. Never will. Labs show he produces no insulin.

Miracle? Ill take that, if its a true CURE. But this? I don't want it.

All these lows, are in addition to horrible gas. Gas that has him hunched over, and (TMI alert) stinking up a room.

Well I am the mama who has several food allergies. So first thing I think?

Celiac.

Endo appt next week. I'm asking for new labs.

Ok. I can handle it. I think since I am gluten free, I wouldn't freak out.

But geez, the kid has Type 1, and Alopecia.

I think that's enough.

Let me take on something for him. Please.

Please.

I beg of you.

For each kid who has more on their plate, than they need.....

This prayer is for you.

And your mamas......

The Lonely Shell...

2011-12-04T01:30:00.001-08:00

*WARNING NOT A GLITTERY, UNICORN PISSING RAINBOWS KINDA POST*

Sigh. Where to begin?

First I feel so bad that I haven't written in almost 2 weeks nor have I been able to comment on blogs. I'm reading as much as I can. But it seems like time is just not on my side.

I am back to working full time now. 8am to 4pm. 5 days a week. Opposite schedule of my hubby. Which makes for ZERO time together. ZERO me time. ZERO breaks. ZERO sleep!

Well we never really get a break do we now...anyway...

Between work, getting The Blue Heel Society up and running (Diane and I have been beyond busy!), the kids, homework, cleaning the house, being a pancreas, and my new eating life style (4 food allergies. Not fun), I am beat!

I feel exhausted and emotionally drained.

There are so many amazing people around me (95% online) but yet I feel so lonely.

You know when you walk on the beach how shells always cluster together? But there's always that one shell on its own, away from the pack? That's how I feel.

I feel like I've lost my sense of self. I'm cranky, I'm drained, I have zero patience and zero time.

Diabetes consumes so much of our lives that are already insane, I feel like I don't get a moment to just NOT think.

I need dead air.

Just the sound of the ocean kinda.

No numbers. No beeps. No computers. No bill collectors. Just quiet time for me and my thoughts (or sleep, vodka, a date with my man! Ya know).

Kinda feeling in a rut.

I know my family is in a better position now and everything I do, I do for them.

From the crazy work schedule to my Fab Blue Heels.......

I'm just trying to find a little something for Alexis.

Some time with friends would be great. Family (I miss them so much) isn't close, so it feels especially lonely around this time of year. I feel isolated and lost some what.

This is a whiny post I know, not the one I had planned but apparently my fingers felt the need to let it out..

I guess I'm experiencing burnout. Which makes feel so selfish for saying since I'm not the one with D! I wanna cry just writing it. What kinda shitty mom am I to even type that. Id take on D in a heart beat if it meant J would be cured. But I can't. I fucking can't.

So I have my burnout + his on my shoulders I guess.

D complicates so much in our lives. Dictates our work schedules, our date nights (well lack thereof), our having to explain to people why you can't put your cell on silent EVER, if we can go to sleep, stay sleep or get any sleep, if we have to spend the day worrying about our child at gym because he's been having a lot of random lows, you get it. D. Shit.

I feel sometimes it pushes me away from others, other things, things I want or need to do but can't.

I can't help but wonder if not for Diabetes would my shell be closer to the others or still so distant.....

World Diabetes Day 2011. Blue Heels.

2011-11-14T16:33:00.001-08:00

First let me say HAPPY BIRTHDAY!!!! To the man who saved my sons life, and countless others.

Dr. Bantings the medical marvel who discovered insulin, his birthday is today. That's the significance of this date for World Diabetes Day.

While insulin is NOT a cure, it is a means to live. Without it Justice would DIE.

That's right. No exaggeration. Fact.

Everyone does different things to celebrate this day.

My house is lit up in Blue, with a Blue ribbon in the window.

The kids wore Blue shirts and ribbons to school.

I was decked out in Blue, diabetes ribbons, and my special WDD shirt from The Diabetes Dude, as was my husband.

Something else happened though.

A revolution. A movement.

It all started with this picture, I posted, and a small idea I had.

Next thing I knew Diane (Dmama diva, shoe lover and my friend), and Tony (That's right Type 1 Rider!), were messaging, texting, and calling me to brainstorm how we can make my small idea into a HUGE MOVEMENT.

And so on the eve of WDD, Blue Heel Society was born.

We are about change. Awareness. Advocacy. Support. No money. No fundraising.

Blue heels for a cause.

Walking in your swaggalicious Blue heels to show support for ALL those living with Diabetes, and let people know we are here.

Much like these fabulous Louboutins below, shoes are gorgeous. Sexy, fun, the envy of others sometimes. But what people don't see is the pain the person wearing them has. The discomfort. How much work it takes to move in these shoes.

Sounds like Diabetes huh?

Well....

If BG is high what do we do?

Bolus.

Heels?

WE ADVOCATE.

Be part of the movement.

One foot in front of the other.

My son, your husband, her mother, his sister, YOU.

Together.

www.TheBlueHeelSociety.blogspot.com

www.twitter.com/BlueHeelSociety

www.facebook.com/BlueHeelSociety

www.zazzle.com/BlueHeelSociety

You in?

28. #DBlog Day 2011

2011-11-09T21:55:00.001-08:00

Today's post is brought to you by the number 28.

This was the number that showed up on the meter when my husband picked up J from school. Confirmed by a 77 arrow down that J apparently ignored.

But today isn't about that low, or the others we have seen this week. Today is #Dblog Day! For more info on that click here.

So I wanted to partake in the scrap book, and I still may but its not done yet due to me now working fulltime, and D kick my ass!

So I'm going with the blog prompt. Which is.....

Why you feel the Diabetes Online Community is so important?

So here are 14 reasons why, 14x2=28. (Its late and I'm beat).

1. Understanding. No one questions why there's a strip stuck to my ass, why there's empty juice boxes in my purse, why I have random basal rates scribbled on my hand or hold on to my cell phone like I will implode if it put it down.

2. Purpose. I wake up everyday with a purpose. Not just for my son but for everyone in the D.O.C. I want to educate, advocate, support and be there for everyone affected by this disease.

3. Same same. My D mamas. They are my sanity. To get a text at midnight from Laura, or a call from Penny to make sure I'm ok, because they know J had a rough week. They let me ramble on about carb counts, ICs, hormones, endo appts, all that good shit. Wendy helping me through my new GF lifestyle, or Lora texting how I'm keeping up at work on NO sleep. They get it. Completely. They love me. They do! And I them.

4. Hope. My PWDs. Oh how I adore thee. You all teach me that 33 years or 3 that while it doesn't get "better" it gets easier. J will be ok. He will drive, go to school, get married have kids. He will succeed in life. Not despite diabetes but maybe even because of it. He has a strength that I swear only PWD have. You all amaze me everyday. I value each of you, and love you guys!

5. Kiddos. Ahhh the kids of the D.O.C always saying funny things to your parents that they of course tell me (world), tushy pics (heehee), sweet notes to J, video blogs, courage, strength, and showing the world super heros do exist.

6. I's Educated. I have learned more from the online community than the endo, hospital, and google combined. Twitter, FB, blogs, have been life savers. I believe I am as good a pancreas as I am (not cocky I swear) because of all of you.

7. Friends. I have like 300+ friends I have never met in my life. And maybe I never will (although I pray we do!). They know everything about me, and I them. We bitch, moan, laugh, cry, throw glitter at each other. I had almost lost my faith in the good in this world until I found the D.O.C.

8. Creativity. Lee Ann this is all you. Your D Art day, and Postcard exchange helped brighten some really rough days for us here. Gave us an outlet to express ourselves, and see the beautiful side of Diabetes. Thank you.

9. D meet ups! I have had like 4? Well one was more than one person...get your mind out of the gutter! Have you ever met someone in person, that you've only talked to online and felt like you've known them forever? I have. Its AMAZING. I cried when I had to leave the last time, well when they did. J said "they make having Diabetes cool. I love them. I want them to stay". Me too.

10. Empowerment: That's right. As much as D knocks me (us) on our asses we get right up and keep fighting. We keep advocating, keep letting folks know the truth behind this awful, shitty, disease. We speak loud, proud, and honest. Always.

11. Mail!! Lol I used to hate getting mail. Always bills and bs. But now I run to the mail box. I love getting notes and goodies from my D.O.C friends and I LOVE sending out stuff too! So much love can fit in a manilla folder did you know that?!

12. BLUE. My God the sense of community is amazing. Have you seen FB?! So much blue everywhere, so many blogs being shared, status being copied, pics being downloaded and posted. Its beautiful! Type 1, Type 2, Lada it doesn't matter! Everyone holding each other up and being there for one another. If the world could operate how most of the D.O.C does the world would be a better place.

13. Carb counts. Shit. There's just some stuff that ain't in cal king. Or that isn't right. I bolused for cotton candy once and J crashed. Someone said they don't. I didn't. He was great. Seems small but its soo huge. And people will jump to get you a carb count via twitter, text whatever!

14. YOU.

Diabetes Awareness Month, Starts at Home.

2011-11-01T20:02:00.001-07:00

This post was written 2 weeks ago, but saved for today in honor of T1 Day.

This post has grammatical errors, punctuation errors and all kinds of mess. Some of it was written at 6am, some at 4pm, just when I felt inspired.

So please forgive the mess.

I decided to honor Justice (and all other PWD/CWD) this week for his Diaversary, which was Friday the 21st, by mimicing his "life" so to speak.

I was hooked up to a saline filled Animas Ping for a week, I checked my bg at every meal, and whenever he wanted me to. I bolused, and I did site changes. I used steel sets 8mm and 6mm just like he does.

This is my journal I guess. I started writing this about day 3 into it, and will keep adding to it and editing it until I am done. So sometimes im speaking in past tense, future or as if its happening at that moment because it is. This is a week of writing thrown together.

Wow.

This is nothing compared to actually living with Type 1 Diabetes, of course. I cant feel the highs, lows, and really understand what its like knowing my life DEPENDS on the pump, and bg checks. But I did get more perspective, and understanding, of why Justice rolls his eyes when its time for a bg check, why he gets sick of pushing buttons, or screams like hell when a site comes out the wrong way.

DAY 1:
I have worn sites before, many times. Steel and plastic. So putting everything on wasn't a biggie. I was excited! Justice was thrilled. I felt really connected to him, a sense of same same not just "mommy understands". Within the first 3 hours the site was hurting like hell. I realized I didn't push it in all the way (we use manual insertion steel sets), so it was pinching my skin whenever I moved. I pulled it, and holy fucking cow ball it hurt like hell! I inserted a new one in my stomach (the place Justice hates) trying to see if this was better. Yea that didnt feel good at all. I think i inserted it wrong because by the morning it was burning and bleeding! Site change...again. as J says. UGH! I used the arm and wow so much better!

Day 2: Ok. Seriously i used the one touch pricker, and the multiclix pricker. HUGE difference. I was in so much pain after using the one touch one. My finger burned like hell, and itched for hours. The multiclix was way gentler and i cant imagine having J use the other one now. Tubing. Yea i was getting cause to all kinds of shit, justice thought it was funny cause he actually never has this issue. When i would get caught i would only notice because it would pull the site and i would feel a slight twinge (word?). Bolusing is a annoying. I get it now. Who wants to have to wait to sit and eat? Yes it must be done and he does it but i get why he groans from time to time. The man just wants to eat! The pump itself felt heavy, my pants would pull down, and i even tried to wear a dress, and rock some disco boobs a la Kim and Kerri, but alas my girls are too big for it to be comfortable TMI? Oh well. There are well endowed pumpers out there who im sure have felt the same. I went with pants. People stare. They wonder. They dont ask questions they just look. As an adult i dont mind it but i wonder if others do? And im sure kids do. They dont understand the curiousity of others.

Day 3.
Site is itchy. Tape is coming off. Had to put dressing over it so it wouldnt come off. Tape sucks. When i pulled it off for site change today it ripped a ton of hair off my arm! That shit was a cheap wax job yes, but painful as shit!

Day 4.
I feel bad. I am wearing the pump, checking bgs, bolusing. I have not taken the pump off at all except to shower. But i still dont feel the true emotions and physical stress the #s put on J and others. I guess i need to make peace with the fact that i never will. But it still hurts, still like a punch in the stomach when i think of all my baby has to endure, and has endured.

Day 5.
Its Justices Diaversary! So i havent noticed the pump as much because i have been running around like a mad woman baking and cooking. Oh yes. We celebrated. 3 years of D boy. 3 years of kicking Diabetes ass!!! Cake and all.

Day 6.
I am really starting to get used to the pump aside from sleeping. But i know its coming off tomorrow and for that i feel guillty. Guilty because Justices cant, guilty because i am happy to sleep without it, and i can. My son cant. He runs on this pump its his lifeline. His life support. I would wear 10 pumps if it meant he didnt have to.

Day 7.
Pump is off. Justice is sad. He said he loved having someone else with a pump, and someone else checking with him more than the 2x a day daddy does (dads type 2, no insurance we must conserve strips, i used expired ones from 2006). But we had a surprise in store for him...

Synsyre wore the pump for 24 hours, to sleep and all, to show his big bro how much he loved him. And when his site got pulled out, and he cried J was there to comfort HIM as Synsyre normally does. It was a beautiful moment. And I feel so blessed to have such outstanding kids. Synsyre hated the pump, he said he LOVED it but he kept asking to take it off, so I know he didn't really. He's a tough kid who's love for his brother outweighs any pain.

Now the big surprise, the reason I took the pump off after 7 days and not 10 or 12, is because Biggah wants to wear it as well. Justice has no idea. Tomorrow while theyre in school i will hook him up.

I hooked Biggah up today. He chose his stomach. My 6'8 man flinched when i stuck it in (nasty nasty), he said it didnt hurt exactly but it didnt feel good. It was very awkard watching him sleeping with it. He has his own thoughts on the subject.

He pulled his site a few times and whined like a bitch. His words not mine. It was weird for him sleep, he had it all jumbled under his arm, and then used Justices Tallygear armband which he said rocks. He forgot to check his bg before driving, every meal, activity, and he said he could really see why it drives J nuts to have to do so. Its not what we are "supposed" to have to do. He's a man of few words but has a new found appreciation (or MORE respect if possible) for PWD, CWD, and our hero J.

This is no way was living like a Type 1 in real life. We didn't feel the emotional and mental toll it takes.

While I feel my own emotions as a D Mom, its not the same as being the one living with the disease. I get that.

Today and everyday honor, respect, support, educate for, people living with Diabetes.

Because you think you know, but you have NO idea.

I still don't.....

Our Diaversary, and Theirs.....

2011-10-21T07:12:00.001-07:00

Today marks 3 years of Justice having Type 1 Diabetes.It also marks 3 years of Justin having Type 1 Diabetes.We didn't know each other then.But on the same day, in the same year, both my family, and Lora's family, were going through an event that would forever change our lives.I can recall just about every nano second of the 72 hours leading up to my J's diagnosis, as well as the actual day.I can remember his first shot, first site, first sensor, first low, first high.The first time he cried, and told me how much he wished there was a cure.The first time I realized and accepted our new lives, and that D was here to stay.I also remember the first time I "met" Lora.Our lives not just connected by D, but a date that would always be significant.Today we celebrate our lives WITH D. We celebrate 3 years of badassery. 3 years of each other.3 years of same same.3 years of our kids being TRUE Superheroes.And the fact that we are not alone.....ever. *Image credit for DOC logo: Mike Durbin (MyDiabeticHeart.com)

9 Years Ago Today...

2011-10-12T21:49:00.001-07:00

I gave birth to my first born.

I learned what it was to truly love without limits.

I found the missing piece of my heart.

I found strength, and courage his eyes.

I knew I was meant to give birth to him.

I knew he would was destined for greatness.

I realized that my heart would forever travel on the outside of my body, as I am now a mother.

Justice has tought me more in his 9 years than I have learned in all my 29.

I have said this before but I know its true so ill say it again....

I was destined to be his mother, and him my son.

I love you Justice. From the depths of my soul, heart, and more then the universe can comprehend.

I only pray you know that.

No matter how upset I am at you, how tired I am or frustrated my love for you does nothing but grow with each second and each breathe I take.

To the moon and back baby.

Happy birthday to my Super Hero!!

*He was born 10.17.02, blogger app messed up the date.

Tomorrow's The Day- Prayers Appreciated.

2011-10-12T17:02:00.001-07:00

First I want to say I'm sorry to all my fellow bloggers for my lack of commenting, and not reading as much as I usually do. Life has been hectic! I post on here and keep it moving. I miss you all, and hope life has been nothing but beautiful for you all.

Tomorrow is the day Synsyre will undergo testing to determine if he needs to start hormone therapy or not. This will also give us an official (hopefully not!) diagnosis of CAH.

The scary part of this test is the risks and side effects they warn you about. Nausea, rash, seizures! I know the likely hood of these things happening is small, but its still very scary.

They will have him hooked up to two IVs. One for the meds and one to draw blood. The boy hates needles. Justice will be with us so I hope they let him in the room to support his baby bro. Justice comforts Synsyre in a way neither myself or Biggah can.

Once the testing is done (3 hour procedure), it will take a few days for results. Prayers are appreciated!

I did get back the bone age results on both the boys and they were normal, so that is a huge relief!

Now we face tomorrow.....

New Look, New Name,

2011-10-11T14:04:00.001-07:00

Do you see it? Don't you love it?!Thanks to Bill a type 3, who I wish had a site I could link to, I now have this amazing new logo, custom made just for me! Drawn in the likeness of both my boys!!Justice is D-Boy, Synsyre is Ribbon. Pic is in that order as well, left to right.And HUGE thanks to my girl Tiffy, who tolerates all my crazy, I now have a new kick ass header, background and button! Love you girly, thank you!!!I have realized more and more this blog is not just about Justice's Misbehaving Pancreas, but his Alopecia, Synsyres adrenal issues, and well my boys as a whole.So I decided to do a full overhaul of my blog.Hope you guys all like.I was going to change my URL as well but it creates more issues, as so many have linked to me and this would render their links well dead.So until I figure a way to do that without the hassle, the URL will remain the same.But I do ask from now on if you link, or mention me, to use the same old URL above but our new name "The Chronicles of D-Boy & Ribbon".Ill keep everyone posted with additional changes if they come.Thanks!

Lucky 3 Winners!!!!

2011-10-11T00:51:00.001-07:00

Thanks everyone for participating my very awesome and special Tallygear giveaway!

I want to send a BIG, HUGE thank you to Donna for allowing me to share the awesomeness that is Tallygear with my readers, and her generosity in giving away not just 1 but 3 prizes!

So without further to do (in my best Carlito Brigante voice), here are our winners!!

*I used Random.org to generate all winners.

WINNER #1 who will be taking home Tummietote with window and matching headband is....Nicole from We Cara Lot!!

WINNER #2: Kids cotton waist pack AND Tallytote Essentials bag with matching headband is...Rachael from Life with Elyssa!!

Winner #3: 50% off your whole Tallygear purchase is....Denise from My Sweetest Boy!!

Congrats to all our winners!! Please email me within 48 hours at JusticesPancreaticAvengers@yahoo.com.

And don't forget just because you didn't win doesn't mean you or your child can't have a Tallygear product of your own!

Just go over here, and check out the amazing stuff!

Thanks for stopping by!

TallyGear and Justice Presents.......

2011-10-08T10:37:00.001-07:00

No, no not the winners of the giveaway yet. 2 more days so get to entering! (Top left corner, click enter to win!).

Today we are unveiling a NEW product from Tallygear, one that Justice and I had a hand in. Cool right?!

Ok so Justice wears his Tummietotes for school, he puts in it; pump, Dex, candy, cell, and meter (or meter goes in pocked depending on his "mood").

The thing is we live in Vegas, its still in the flipping 80s and 90s here! Justice is a VERY active boy, so having the tummietote on him as comfortable as it is, was causing his back to sweat. He was getting bothered.

He loves the sportsbelts, but the issue was there's only two pockets, one for pump and cgm. (If you don't have a CGM than you can use second pocket for candy (for lows) and problem solved. But he has a lot of stuff to carry!

Sooo he said, "I wish the sportsbelt had a third pocket. Like big enough for my cell phone, glucose gel and smarties. I could fit a meter in there if I needed to also".

So I started emailed the amazing Donna and she loved the idea! In a few days it was here!

Justice immediately put it on and was beyond happy! He was seriously so excited it was bittersweet ya know?

He said it doesn't move, he has everything on him with easy access and his back didn't sweat!!!!

And as usual you cannot see it under his clothes, which for him is very important.

The awesome thing is the attachment IS removable so you can switch which belt you want to add it to!

Keep an eye out, it will be on Tallygears site soon, and you can always request a custom order.

Let them know Justice and I sent ya!

NO D Day 2011-Shoes & Smiles

2011-10-07T01:29:00.000-07:00

So today is the day where we don't discuss anything D related. Nope. None at all!
I wish I could link to the amazing creator of this day, but my app is down and I'm posting via email. So Ima just have to give him a HUGE shoutout! George of Ninjabetic is behind this amazeballs idea!

So thank you G for giving me a reason to discuss something else besides....ya know....here it goes.
Ahhh. Today I wanna talk about some thing that makes me smile.

Makes me feel good no matter what's going on.

Boosts my confidence and helps me feel like a brand new person.

After a shitty day, I love to splash some make up on my face, and grab one of my favorite pairs of shoes and go dancing.

The shoes build me up. Well yea they make me taller too duh, but that's not what I mean.

I believe you can tell a lot about a woman by her shoes.

Her style, her love, her passion, her strength, what she enjoys, how she sees herself ya know?

I'm not sure what it is about shoes that make me smile but they do.

Obviously I would love some Choos, or Louboutins but ain't no $ for that here.
I love consignment shopping.

And I kinda feel like the shoes come with a story, some history even.

Who knows what amazing road, or courageous act was done in these shoes right before me?
I will take them with me now on a journey, and some day pass them on to someone else, so they too can experience a trip of their own.
Kinda a new twist on "walk a day in my shoes". huh?
Where do your shoes take you?

Wordless Wednesday---Support Swag

2011-10-05T21:51:00.001-07:00

*CAFEPRESS.COM/MISBEHAVINTEES

Thank God For Synsyre.

2011-10-03T20:23:00.001-07:00

He keeps me smiling. Always.

For The New Travelers....

2011-09-30T16:25:00.001-07:00

There is a road many know little of.

One they never think they will travel.

It's bumpy, and dark, and filled with chaos.

The trees are overgrown and the animals run wild.

You cannot see for sure where you stand; you only know this was not in your plans.

It is not a route you wish for, but one that decides it's your path.

I used to feel alone traveling this road, wondering who else was headed where I was.

As years passed the road became clearer.

The sun started to shine.

The road, you see, it wasn't just mine.

There are others beside me walking along, trying to make sense of what is not the norm.

I used to walk up this road feeling heavy and bleak, not uttering a word for who was I to speak?

I now see by my side, faces of those who have been where I have been and who will go where I go.

Together, we will be.

Laughter and love fill the air, there is joy in our hearts and no more despair.

For if not for this road, I would not have seen all the beautiful things right beside me.

Faces and lives I would never have known and friendships I know can't be outgrown.

For we take this journey together, hand in hand, knowing that this path must be GOD's plan.

I know one day there will be a new road, one we all can't wait to walk.

This road will set us free from the hurt and the pain; a hurt, a pain that if I had never known, I would not be the same.

I now don't see the dark and the sad; I see there is Hope even through bad.

If you end up on the road less traveled, remember it does take time to fix what's unraveled.

But I swear to you here and now, you'll never be alone.

I will sit and show you the calm after the storm.

Best. Friday. Giveaway. Ever! CONTEST CLOSED!!!

2011-09-29T22:19:00.000-07:00

Ok I'm a lil bias.

Yup.

Me!

I'm hosting a giveaway!

Not just any giveaway.....are you ready??

A TALLYGEAR GIVEAWAY!!!!(Tallygear.com for full product list and info).

Ok so as you know, I am a loyal (well Justice but whatever) Tallygear customer. We love love love and ONLY use Tallygear to hold Justice's Ping, Dexcom, fast acting sugars, and cell phone.

He uses it at home, school, pool, park, wherever.

Tallygear is not only functional but soooo cool!

The styles range from Batman, to Tye Dye, to Skulls!

No matter you or your childs age, or style there is something here for YOU.

So here's what the amazing Donna of Tallygear has offered up to give away.

Y'all ready?

Prize #1:
Tummietote with window and matching headband (see Reyna)

Prize #2:
Kids cotton waist pack AND Tallytote Essentials bag with matching headband (again see Reyna)

Prize #3:
50% off your Tallygear purchase!

Here are the rules:
You must leave a comment before October 10th at Midnight.

Entries must have a name, and email for contact, if you're not registered with blogger.

You must claim your prize within 48 hours or I go to the next person

You can only win one prize per household. I will be picking the names/numbers by random to determine who wins what.

Extra entries!
1) Follow my blog and Tallygear's blog InsulinPumpPack.blogspot.com
2) Please "like" us on Facebook (if you have a FB).
Facebook.com/JusticesMisbehavingPancreas
3) Follow me on Twitter.com/Sugar_Nova
4) Blog about this giveaway
5) Share it on FB and or Twitter

Remember: To earn an extra entry you must leave an additional comment for each step you did.

That's it!

And if you don't believe how amazing Tallygear is...watch this!

Disclaimer on video:

Justice did NOT play poker.

Justice did not just "walk around" a casino.

Justice does sweat a lot.

Walk Project 2011- Help?

2011-09-28T09:24:00.001-07:00

For those who have been following my blog from last year you know I like to do something special at the walk.

Last year we had a shirt that featured over 100 names of people living with Diabetes.

And a section honoring those lost.

This year I would like to do something else.

I would like to represent all of YOU at our walk.

Our walk is Nov 19th, so you have enough time!

I'm asking for you to send in a picture of yourself (if living with Diabetes), or your loved one.

That's it.

Wallet size prefered but ill take any size and make it work.

Pictures will need to be mailed NOT emailed. Thanks!

If interested please email me for details:

Justicespancreaticavengers@yahoo.com

ALSO! DON'T FORGET I STILL NEED LETTERS, DRAWINGS ETC OR JUSTICES BOOK.

These are to show him support and that he's not alone. It will be something he can look at whenever he's having burnout or just a bad day.

Thanks!

xoxo

He Aint Grown, But Him Growing...

2011-09-26T10:25:00.001-07:00

So I wasn't going to blog today, going through some personal stuff and just kind of not feeling it.

But Justice told me yesterday after something pretty awesome happened, "You gotta blog this!".

So here I is.

Yes, I'm not obeying grammer or proper english today.

So here goes.

Saturday I was feeling like SHIT, ladies time (hmmm I seem to be in sync with one of my favorites), anyway, I heard the boys wake up, I grumpily (bitchily?) got up to see what Js bg was, and if they could handle breakfast.

Well Justice had already counted the carbs for his waffles, agave syrup, vitamins and yogurt and had pre bolused.

Ok. 3rd time this week I'm not surprised, proud yes. Surprised no.

I asked the kids if I could go back to my room and rest, my door would be open (our house is small living room right off of bedroom), juice, meter, tabs on coffee table, and Synsyre knows to come get me if needed for anything D related.

I wasn't alseep really just resting, I needed it. The cramps and headache were unbearable.

I hear from the kitchen "Maaaaa! I'm 145 I'm having a protein bar, bolused for 25 graaaams!".

I smiled, then hollered back "Good job! Give Synny one too!".

Eyes closed again.

"Hey mommy, can we have hot pockets for lunch!".

I hate these things. They're soooo good but sooo bad for you, but Biggah bought the fucking army pack, so may as well.

I let them know it would be fine and start adding carbs, but before I could holler Justice comes in "I'm having 2 hot pockets, and a bag of Lorna Doones, that's 90 grams, ok?".

I was in awe. I smiled, praised him and said enjoy.

I got up to check on them and he was drinking a juice.

Wtf?

"I was just coming to tell you, I felt low and I was xx (I don't remember exact #), so I grabbed a juice".

I grabbed his face and kissed.

I told him how amazing he is and how unbelievable proud I am of him!

I said I know George and Scott would be so proud too! (His D amigos).

He said "Well I have Diabetes, its what I gotta do! Mom! I'm really doing it!".

My eyes welted up. It was tears of joy and sadness. Joy for what he had done but sadness that it had to be.

Yesterday something else happened that made was sooo cool.

Justice wanted an orange, he said "I think its like 29 grams, what do you think?". I thought 25.

So we grabbed our food scale (it gives actual carb count when you enter code for X food.)

Enter code.

Place orange.

31 grams!

When I tell you my baby was JUMPING in the air he was. He was soo proud of himself, it boosted his confidence in a way I've never seen.

I peeled the orange, and he ate it.

Juice all over his face. A mess. I think there was pulp in his hair!

He's growing up alright, but he will always be my baby.

Alopecia Induced Swagga

2011-09-21T23:26:00.001-07:00

Last week Justice told me he noticed kids staring at his bald spots.

Heartbreak.

We have started the cream steriod but 1) there's no guarantees 2) its not an immediate solution.

I though about hats, bandanas, hoods but those seem like it would draw more attention.

And then it hit me.

His confidence is coming back.

Watch out world!

*Special thank you to Rhonda of "Autoimmune Island" for being a great source of support and knowledge in our new journey with Alopecia Areata.

Do I Dare?

2011-09-21T07:01:00.001-07:00

Ya damn skippy.

First I need to say this. If you know me via FB, twitter, my blog, the "real" world you know......

I am THE most honest person. Period.

I tell it like it is. Always

BUT.

I am first and foremost, a friend. Supportive, non judging and ready to be that shoulder some need to lean on.

My blog can be...well sad. It can be depressing. It can be like wow this girls life is jacked up.

And it can also be happy, a source of laughter and smiles.

Whichever it is its always "same same". Its always real, honest and here to let everyone know they're not alone in this journey.

I have met many different people, all who who handle D differently. Not just bg management but in their approach in regards to emotions.

And I LOVE that.

Sometimes I need to curse D out with my friend, and sometimes I need to realize how while D sucks, my baby is here and we are living this life.

BUT what I do not need is those who choose the more postive approach belittling or degrading me and others for our choice to vent, cry, bitch, whatever.

Please understand what I am about to say. Just because YOU may be on the more "postive" or in this case "glittery" side of things does not mean I fault you, or am angry with you. Shit I need you to help me get there sometimes!

What I do fault, or get angry with are those who because they feel differently, feel the need to put myself and others down.

I had Dmoms delete me on FB because I wasn't "glittery and happy" enough.

How is that supportive?

THAT is what I don't like.

That is why I make comments like "suck a unicorn horn, and get high in your pile of glitter".

To address those who have hurt me and my friends with their words.

I was actually told a month back "Well I'm a parent to my child NOT an advocate. Maybe that's your problem. I live our life to the fullest, so that's what we are happy".

How is this above statement ok?

Why am I put down for being a parent AND an advocate for this disease?

So I post funny pics of glitter and unicorns.

I create witty shirts explaining our kids bleed from their fingers not shoot out glitter.

I crack jokes.

Why? To show how senseless this arguing is.

I support both sides of the approach.

BUT I also have a different life than you may.

I have other struggles that complicate the ones D already creates.

So I vent.

I cry.

I get angry.

And if you don't that's ok.

I respect that. Honestly.

But don't make less of my life because my approach isn't like yours.

And this word glitter patrol?

Just because your positive doesn't mean I'm talking about you. I need to stress that because I don't want any of my Dmama friends I love to ever feel anything other than love from me.

If you have ever degraded, belittled, invalidates, insulted, or anything of that nature, myself or other Dmoms for OUR approach, then yes I'm talking about you.

This post is kinda jumbled because I'm actually upset now.

I feel that our words are being twisted.

And our community divided.

Its not ok with me.

And it shouldn't be ok with you.

Joe, Lets Tango!

2011-09-18T20:21:00.001-07:00

Justice wanted to personally thank Joe for that awesome VLOG. It lifted him up and definitely made us all smile.Reyna. YOU do that for ME everyday. Love you lady.Without further to do..

A Repost: Invisible Illness Awareness Week.

2011-09-17T01:40:00.001-07:00

This is a repost from my contribution to Invisible Illness Awareness week from last year.

"Open Your Eyes. Its There."

I have been struggling for a few days with what to write for Invisible Illness Awareness Week. Why? Well, cause I feel like I have to "defend" how serious my sons illness is everyday of my life. I wasn't too sure how writing about it would help. Now I feel inspired, so here I go.

Diabetes is a disease that knows very well how to camouflage itself, but if you really CARE to look you can see it.

You can see it in my sons blistered fingers.

You can see it in the blood drops all over his pants.

You can see it in the rings under his parents eyes from lack of sleep since diagnosis.

You can see it in the bag that they carry with them that is clearly not a pocketbook.

You can see it in the worry in their faces every time their son says "mooooom", in that voice that just tells SOMETHING IS WRONG.

You can see it in the little spots all over his tummy from injections, and infusion sites.

OK well some people are blind to the obvious huh? Lets try is this way.

You can actually hear it too.

Listen for the mother or father who wants so desperately to tell you how their son had a low that caused some memory loss, and how they wept in their rooms quietly as he slept.

Listen for how the youngest sibling feels left out because he isn't getting "presents" from people in shapes of insulin pumps, and other LIFE SAVING devices.

Listen to how the parent whispers in their sons ear at the BBQ "OK, just remember your tabs are in your pocket and I am right here".

Listen to the quiet vibration of the the device attached to this innocent child, while it's delivering LIFE SAVING medicine in the tiniest of doses.

Listen how the phone calls from the schools seem to be never ending.

You get the point. It's there. Just because you want to pretend it's not doesn't make it any less.

My son is 7 years old. He is a type 1 diabetic, since 10/21/08. He didn't cause this, neither did we. His body attacked itself and now his parents must act as his vital organ to keep him alive. He NEEDS insulin to LIVE. Just like you do. There's fear of complications, comas, seizures and dare I say even death. It's real. The faster you see it, embrace it and support us, the easier all of our lives will be.

To all my PWDs, CWDs, D moms, D dads, and other caretakers.

I SEE YOU. I HEAR YOU.

WE ARE IN THIS TOGETHER.

Update

2011-09-15T20:08:00.001-07:00

Sigh.

I don't want to make this a long post, I'm just too tired and kind of drained from all the medical crap going on.

UPDATE on Justice first:

Dermatologist confirmed he has Alopecia. He says hair usually falls out and grows back. He gave us a steriod based cream to promote hair growth. He said the bald spots are not shiny which indicates hair folicles are still alive just not working. And this is indeed autoimmune. Fuck a duck.

Bone age xray was done today, and results should be back on Monday, hopefully.

Synsyre:
Bone age xray done today as well, should be back Monday.

I thought we were waiting for insurance to approve the outpatient test for his Adrenal gland manipulation. Well apparently CDE didn't even submit it yet! UGH. She said they are behind. Whatever, did I mention my RX for strips got messed up too? Yea.

Anyway I told her I expect it to be submitted and scheduled by next Monday. So here's hoping!

Upside Synsyres A1C was 5.5 so I can stop worrying about that for a lil bit. We don't do trial net anymore so I like to keep up with A1C, as you know we all fear of another dx.

And that's all I got.

D has been being a fickle fucker and there's no pattern so I can't make any changes.

I'm so tired and really could use a drink.

Anyone care to join me?

(*Blogger still being funny, so sorry I'm not caught up on everyones blogs, thinking of you all*).

SPECIAL SHOUT OUT TO REYNA AND JOE FOR THEIR TOUCHING AND AMAZING VLOG FOR JUSTICE. LOVE YOU GUYS!

Calling PWD or Your CWD- "Normal".

2011-09-12T10:26:00.001-07:00

Sigh.

Lately Justice has been saying, after I tell him to bolus or check bg, that he "just want to be normal!".

Its heartbreaking.

Synsyre and I even concocted a notion the other day that maybe WE were the one with the falty pancreas' and maybe everyone is supposed to have pumps! Maybe there's a planet of beings where everyone is each others pancreas'!

Pathetic? Yea. I tried. I have held him, let him cry, vent, even let him say "D can kiss my arse". I know, I know.

But its not helping.

He feels different.

He says even though dad has Type 2, he just checks his bg, pops a pill, and that's it. No bolus, no site change, no Dex.

Most days are fine, but on days like yesterday where he was in the 300s for hours due to a bad cold, it gets him down.

So I would like to do something for my hero.

Something showing him Same Same. Ya know?

I would like to know if any PWD or CWD would be willing to write a letter (handwritten is more personal than an email), to Justice.

Tell your/their story, how you cope, that it will be OK.

I will then compile a book of all these letters.

I think I will call them "Pancreatic Avengers" after his JDRF team name, its fitting.

It will be a book he can look at and read whenever he needs a pick me up.

A VLOG would work too, if anyones into that.

I have found the support, comfort, and calm in all of you, please help me to give Justice the same.

If you're interested please email me at newells.an@gmail.com for my address.

Thanks!

*Please excuse me on my lack of blog comments, I am having major issues commenting with my phone sometimes, but I am reading and I am here! Love you guys. xoxo

Where I Was...9.11.01

2011-09-10T23:11:00.001-07:00

(I posted this on my personal blog but thought it should be viewed by all).

Its no surprise to most of you I am a born and raised (insert OBNOXIOUSLY PROUD) New Yorker.

Born in Brooklyn, raised in Brooklyn and I've lived in every borough for atleast a few months, and worked in the city (Manhattan folks), for all of my working years.

What some don't understand is NY is not just a city or state.

Its not just where you're born, live, or are from.

Its who you are.

It breeds soldiers.

It creates stars.

It changes opinions.

It creates diversity.

It educates on ignorance.

It allows all sorts of people to be who they are, find out who they can be, and accepts them.

I will never love another city, state (or my borough) like I do my home of NY.

When I walk the streets of my beautiful city I feel empowered, honored and part of something bigger than me.

I feel safe. Funny huh? So many people watch movies and hear music and are scared shitless to walk the streets of Harlem or Bed Sty, while I never feel more at ease.

Until 10 years ago.

I had just got let go of a temp job the day before, and I was off to another office.

This one was on Spring street, while my last job was only a train stop from World Trade Center.

I was leaving the office, ready to go home, smoke some good stuff (hey, I was 18 and on my own), have a beer and watch FRIENDS.

I was in a very abusive relationship at the time with a real piece of shit. I was sitting on the train pondering why I was with him, should I leave? What about my apartment?

When the smell of smoke bumrushed the subway car.

Holy fucking shit. I stayed calm. (I thought it was just a fire on the tracks, that shit happens all the time). But then we stopped.

The conductor announced this will be our last stop, we have an emergency and smoke is filling the subway tunnels. All trains are out of service.

WTF?! That never happens!

People starting rushing, pushing and panicing. I walked slowly making sure the pregnant lady next to me got up the stairs ok.

To this day I can't remember what train stop I was at. But I'm pretty sure it was 125th in Harlem.

I made it out of downtown by the grace of GOD. Had I left a little later I would've been stuck downtown.

I walked out of the subway and saw more smoke in the air then I had ever seen. MIND YOU I'M ON 125TH ST!! That not that close to WTC.

All of a sudden I notice cops, fireman, and other EMS employess loading on to public buses. Wtf??

They were filling them. They were in stealth mode.

This was NOT good.

Finally a cop told me the unthinkable.

TWO planes hit the WTC.

I almost collapsed.

My mom. Omg. My mom (and baby brother), told me they would be at Century 21 shopping this morning. That was right across the street from WTC!!

I tried her cell maybe 100 times and couldn't get through. My heart hurt, my stomach was in knots, I thought I had lost my whole family. What would I do??

Little did I know in Brooklyn, the man that I would meet a few weeks later, fall in love with, marry and have children with, overslept, and missed his meeting which was on the TOP floor of WTC Tower 1. His meeting was supposed to be at 9am in Windows of the World, had he woke on time.....

I wouldn't have my husband today or my boys.

But that day I didn't know any of this.

Finally I got through to my mom, she was at home. She never made it to go shopping.

Thank you GOD.

The next few hours entailed me walking almost 50 blocks to a bus that would get us into the Bronx, from there we had to hitch rides with strangers to get us home, and then walk where they left us.

I was scared.

I felt betrayed.

Shocked.

Unsure of what was really happening.

When I got home and saw on the news what had happened, I cried. I didn't speak I just cried.

I had worked those buildings.

I had had my 17th birthday party at Windows of the World.

I had met my friends for coffee many times right across the street.

I had seen those beautiful buildings everyday. My whole life. They were (are) part of NY, that everyone knew.

They were glorious.

They were tall, strong and solid like our city.

And now some evil people had taken them out, and all the innocent lives in them and around them.

I saw people jumping out of windows. Not on youtube. On TV live, as it was happening.

People I could have known, or loved ones of people I knew.

I was scared to sleep. Scared to walk anywhere. Scared to be.

But we did.

We gathered supplies, we volunteered, we helped those in need.
We watched to see if we could identify those missing.

I brought dinner to firemen, I helped organize volunteers to go to Ground Zero.

I did what I could.

I knew that even though our city was in turmoil it would NOT destroy us.

We are fucking New Yorkers baby.

We are strength.

We would support one another, hold each other down, and make sure we took care of one another.

And we did.

It took this awful, devasting, heartbreaking tragedy to make me realize I couldn't continue my life as it was. The man I was with would eventually kill me either physically or emotionally.

I knew I did not want to be with him while this was happening, which mean I should never have been there to begin with.

A week later I packed my bags.

I never looked back.

10 years has passed and I still shed a tear when I see the WTC.

When I think of that day and how it changed our city, and so many innocent lives.

But still we stand stronger than ever.

Towers are gone. Family, friends, and others lost.

But never forgotten.

They shall live on in our memories, our hearts and our prayers.

And if you ever wondered about courage and honor?

You must never have been to my home.

We are not invincible but we are fucking mighty.

We are the streets as my sister said, and NO ONE could take our city from us.

Period.

RIP TO ALL THOSE LOST. WE WILL NEVER FORGET YOU, AND WILL HONOR YOU AND YOUR MEMORY ALWAYS.

What Matters?

2011-09-08T18:40:00.001-07:00

My waist may never be a size 2: Doesn't matter.

My hair will never be as luxurious as Kim Ks: Doesn't matter.

I don't own a house: Doesn't matter.

I don't have a brand new car: Doesn't matter.

I buy from consignment shops not brand new: Doesn't matter.

We can't afford a vacation: Doesn't matter.

I have second hand furniture: Doesn't matter.

We didn't go on vacation this summer: Doesn't matter.

Someone was bad mouthing me on facebook: Doesn't matter.

If I can't go out with my friends: Doesn't matter.

If I never strike it rich: Doesn't matter.

----------------------------–----------------------------------------------------

My kids have health issues: That matters.

We have a house full of supplies to keep J alive: That matters.

Synsyre will get his blood work and meds as needed: That matters.

I have a husband who holds me when its all too much: That matters.

I have friends who support me: That matters.

I'm going to do everything I must to keep my kids safe, take care of their medical and non medical needs, make them smile, and enjoy life.

I'm going to do my best to be strong for them.

Take my que from them.

And never give up.

That all that matters.

Take a look at what you're worried about. What you focus on.

And ask yourself how much it would matter if YOUR child was diagnosed with an illness, disease, disorder or condition.

There IS only one answer.

Not. One. Fucking. Bit.

Synsyre's Endo Appointment. YES. Synsyre.

2011-09-07T17:45:00.001-07:00

So perhaps I need a new blog name? New logo? New bio?

Let's see last we left off Justice had Type 1 Diabetes, well duh, and now an unofficial diagnosis of Alopecia.

Let me back track.

A few months ago I noticed BOTH of my boys had B.O. Bad.
Hairy knuckles, hairy toes. You get it.

I voiced my concerns to endo, I know a lot about the endocrine system and B.O in young kids can be a red flag sometimes.

So we made a double appointment.

Endo found pubic hair on Justice and a little fuzz on Synsyre. She asked some ?s about Biggahs history and mine.

She suggested doing a full lab panel. She said she wanted to check for signs of early puberty.

Ok.

So last week as you know Justices lab came back, which coincided with the whole Alopecia craziness.

Well today Syns came back.

Nurse called. I assumed it was about pump supplies rx. When she said labs were in for Syn, I didn't even think about it. I knew all was good.

She started to tell me BG was elevated---I almost dropped the fucking phone---then she said but phlebotomist notated that he had just eaten, BG was 113, so since he didn't fast it was perfect. Phew!

Then she said thryoid was .1 over normal, high end of normal is 2.4, his (and J) is 2.5, she said definitely NO biggie.

She then said, "One of his adrenal tests were abnormal. A certain hormone we make, he has too much". I stopped eating my apple. I almost threw up.

She said CDE would call me tomorrow to schedule more tests, and that we need to get his xray (and Js) done to show bone age.

I hung up.

I paniced. I cried. I almost passed out.

Then I said NO. I need to know more.

I called and got the name of the hormone its called "seventeen hydroxypregnenolone". Well fucking A.

Normal levels are under 72. Synsyres are 116.

I googled, and got a bunch of medical jumbo which made no sense. And then I found information on "high levels" of this hormone.

Its called Congential (yes passed on from parents. Greeeat) Adrenal Hyperplasia. Here's the link for more info, click here.

Basically it has to do with early puberty, fast growth as a kid, which can cause stunted growth as an adult and other awful shit like infertility. Its the same disorder that causes girls to have both male and female genitals!

Its basically TOO much male hormone, so for boys its not the same effects.

We now have to have a test done, adrenals will be manipulated,a hormone is given to Synsyre and labs drawn to see if it is producing too much or not. If so we move on to steriod/hormone therapy.

If not we retest in 6 months? Something like that. I spaced out I won't lie.

So now we pray.

So hmmm what's a good blog name for 2 kids with Endocrine disorders?

"For Fucks Sake" ?

Fear.

2011-09-04T21:33:00.001-07:00

I'm not sure if any of you watched my You Can Do This video, but I touched upon the subject, a little bit in there.

I have always been a lil...well, over the top. I have always been the hovering mother, anxious that a cough was more than a cold, or a headache was more than stress.

But I could turn it on and off.

I could relax.

Enjoy the moment, and not over analyze things.

After J got diagnosed, all of my deepest fears and anxieties became magnified by 1000.

Justice saw his pediatrician just 6 weeks before going into DKA and being diagnosed as a Sudden Onset Type 1.

No one said a thing.

No one saw a sign of anything wrong.

Sudden onset is exactly what it sounds like. It happens in the blink of an eye.

My fear?

That something else will happen in the blink of an eye, and I won't be able to catch it.

I obsess over hand washing.

I google any symptom or thing that occurs to me or the kids.

I check my own sugar weekly.

I have gone to the ER more than 5x since dx because I was certain I was ill.

I'm constantly in fear.

Checking all of us for lumps, moles, bruises, ketones, yellow eyes, weird stools, anything that may indicate illness.

Its overwhelming.

Its frustrating.

Its lonely.

We got a puppy, and I can't even enjoy him. I'm scared to let the kids play with him till he sees the vet, in fear they will catch worms or some illness.

I was never like this.

Ever.

I fear something else happening to my kids.

I fear something happening to me, and not being here to take care of them, especially J.

I fear Biggahs type 2 will become insulin dependent.

I fear.

Its exhausting.

Diabetes came into our lives with no warning, no time to prepare, it almost took my son.

I know that I couldn't prevent it, or stop it from happening.

But I feel responsible none the less.

So now I'm constantly preparing myself.

So nothing else can swoop in.

But I'm so caught up in THAT, I'm missing everything else.

Justice UPDATE

2011-09-02T17:54:00.001-07:00

Hi. Sigh.

So this is where we are at.

Labs came back pretty much normal, thryoid levels were slightly elevated and White Blood Cell count was 500 below normal.

According to Endo, that's no big deal and we will redo labs at next appointment which is in 3 1/2 months.

Endo and CDE both agree it looks a lot like Alopecia Areata. And suggested we start a multivitamin (we had both the boys on them for a while along with Olive leaf extract, but I was always told to take them off it for a while so the body doesn't become "used" to it?)

Anyway that's done.

Next step is a Dermatologist, and possibly a nutritionist. I snapped a few pics from behind while he wasn't noticing. I don't want to snap any of his eyebrow cause then he may become worried.

We have not discussed any of this with him yet. There's no reason until we see Derm or atleast have an official diagnosis. He's not stressing it so I don't want to give him a complex about it.

Thank you all for your continued love, support, prayers and hugs, they mean the world to us, and without them I'm not sure if I would be this "calm" right now.

I will update again as soon as we see the dermatologist.

Praying for some definitive answers.

Thankful it wasn't the worse case scenario.

Who Says' Theyre Not Perfect?

2011-08-30T20:34:00.001-07:00

Justice is a JDRF Youth Ambassador. A group of kids who work with JDRF to spread awareness, and educate about Type 1 Diabetes. These are probably the most amazing kids I have ever met. They give me strength.They give Justice support.They give me Hope.They make me smile.I'm sure you will too.Video credit: Reed our Youth Ambassador historian

Diabetes Art Day 2011: My Therapy during this time.

2011-08-29T14:21:00.001-07:00

As many of you know we have had a trying 2 weeks. Justice is showing signs of losing his hair (bald patches). We have done the lab work and now have to idley by and wait for the results.

Once results are back we will know from there if its a thyroid issue, if not next is a dermatologist to determine if its Alopecia.

Its been rough, someone actually made a comment about it infront of him, and even laughed.

He shrugged it off, I cried.

I needed an outlet. And for me creativity has always been a major part of relieving stress.

Well it just so happens Diabetes Art Day is this week! Last year I believe was the 1st year and it was a blast. It was started by the awesome Lee Ann.

Check out her blog here http://www.thebuttercompartment.com/

You can see some of our art from last year if you click on the tabs above.

Here are our submissions for this year.

Photo by Mommy, blood provided by Justice
Drawing by Justice
Wall art by Mommy (yes its hanging in our hall!)
(Synsyre isn't finished yet)

Don't forget to click here to add your art and see the rest of amazing pieces done by the DOC!

http://www.diabetesartday.com/diabetes-art-day-2011/

AGAIN THANK YOU EVERYONE FOR ALL THE LOVE AND PRAYERS I WILL UPDATE AS SOON AS I KNOW SOMETHING.

Scared, Angry, Overwhelmed.

2011-08-24T17:01:00.001-07:00

I'm going to keep this short. Not sweet unfortunately.

A few weeks ago I went ahead shaved J's head. It was running in the 100s all week and he was sweating and stinky.

He accidentally moved. I zeeked him. That means I clipped too close. So what should happen is that spot is shorter than the rest of the head, and just grows back at a different length.

But it didn't.

Its a bald spot.

Hmm ok. Not stressing.

Today we went to get the boys their back to school hair cuts.

And the girl cutting asked me what happened. I explained. She said that shouldn't leave a bald spot. Just a spot where the hair isn't as long as the rest of the head.

She kept cutting.

And then we saw them.

More bald spots.

Not as large but evident.

Smooth skin. NO hair at all. Not stubby or short just...bald.

I had to fight back the tears. It just didn't make sense.

So I googled. And googled. And left a message for our endo.

The only two causes I have found are alopecia and pituitary (thyroid) issues.

So now I'm on edge.
( I also just noticed he has a small bald spot on his eyebrow!)

And now he's noticing.

Prayers appreciated.

If It Was You.

2011-08-18T22:29:00.001-07:00

What would YOU do if your child was diagnosed with Type 1 Diabetes?

What would YOU do if you couldn't afford insurance?

What would YOU do if the state denied him coverage?

What would YOU do if knew your childs life span could be reduced because of this disease?

What would YOU do if you had to watch your child moan, at the pain he felt when his blood sugar was too high?

What would YOU do if your childs sugar was dangerously low, but they refused to drink juice or eat candy?

What would YOU do if you knew others had buried their children due to lows in the middle of the night?

What would YOU do when kids teased your child because of their medical equipment to which they are attached 24/7?

What would YOU do if you had to leave them at school all day, their life in someone elses hands.

What would YOU do if you had to pierce your childs skin daily?

What would YOU do if you had to see your childs blood everytime you sat them down to eat?

What would YOU do if your childs life depended on a small bottle of liquid?

What would YOU do if you didn't sleep more than 2 hours at a time?

What would YOU do if you had to make life and death decisions every moment of everyday?

What would YOU do if you had to worry about keeping your child alive at that moment but also 20 years from now?

What would YOU do if the most simple things in life were no longer simple?

What would YOU do if life as you know it was about to change forever?

What would YOU do if YOU were me?

Hard to answer isn't it?

I only hope that YOU never are.

But if that day comes I will support YOU.

And that's all I ask of YOU now.

Wanted Care free, Blissful, (Its Never) Simple Living.

2011-08-11T14:06:00.001-07:00

WARNING: RAMBLINGS OF AN EXHAUSTED, EMOTIONAL, TORN MAMA LIE AHEAD.

The sound of quiet through the house, while children lay asleep.

Splashing in the pool for hours on end.

Stuffing their little faces with endless amounts of fruit on a warm summer day.

Running around the yard till their legs can't take anymore.

Falling alseep in the car to mommys music on the radio.

Eagerly attending a pizza and ice cream party.

Getting a few hours extra sleep, when the lil ones decide to sleep in.

Baking a cake, licking the bowl and getting frosting all over their faces.

Not finishing their dinner because they are just too sleepy from the days events.

Treating themselves to some sweets they found in your pocket book, leaving their cute faces sticky with residue.

All these moments, each so innocent and care free.

For some.

For us they would have been or were before 2008.

I didn't have to worry about how to manage and handle these lil moments of bliss and life as its simplest.

Is it simple? Carefree? Pure bliss?

For parents of those with Type 1 kids, it is never simple. It takes a lot of work to make these moments remain blissful and not take a turn for the worst.

I forgot how to be carefree. How not to worry. Its because I can't. Moments like these, and moments of just being take planning, thought, calculating and sometimes yes worry.

This week I decided to try and go with the flow. Be more carefree. Start loosening the pancreating reigns.

We went to a movie, and I let J and S share a LARGE bag of movie theatre popcorn, they also had hot dogs, and some diet pepsi.

Usually when we go to a movie I bring pre weighed, pre packed, carb counted snacks. OR I get a small back of popcorn and dish out handfuls, since I know how many carbs that usually is.

But not this time. They just dug in. J ate out of the bag, I swag bolused! I swag basaled! I held Dex close to me through out the movie so I could see if more was needed or if he was crashing.

And I rocked it. I did. He started at 115, hit 190, and ended at 154.

I felt so proud of myself for trying. For not being scared. For letting him just be a kid. Not a kid with diabetes.

Sure we had a 36 a few hours later but we treated and moved on.

The next day we went swimming.

Sounds simple right? HA. Since pumping swimming has become very complex for us. If we remove Js pump, he will end up high with ketones or just high. If we leave pump on but boost he drops low then goes high later. If we leave pump on and reduce basal he sky rockets hours later.

So I said here we go. Trying something new. A minus 30 basal for 2 hrs, a 15gc snack before swimming to get him 200, and I even put Dex in a waterproof case I got from Donna.

I was ready. J kept swimming to my right to my left, down the slide chasing his friend, Dex couldn't keep a signal so I put him in my bag. 1.5 hours into swimming J hit 96, we turned basal off for 30 minutes and gave 25gc.

Another hour of swimming and he ended at 116! I bolused for the 25gc since he was now arrow up on the way home. We got home for lunch and he was 78.

No lows, no highs, no ketones! Just fun all day! I did it. And I am so proud for trying!

I also find myself beyond inspired by Reyna and Joe. So I made calls, got quotes, and am in the process of trying to get together the money (mom? Grandma? Help!) to sign the boys up for Tae Kwon Do! Yes!

I'm at a place where I am not going to let Diabetes stand between J and what he wants. I'm going to work hard and make it happen.

I know it won't always end perfectly but I won't know unless I try.

I was feeling so good yesterday.

Over the moon.

Empowered.

And then.....

I read on facebook about TWO type 1 girls age 14 and 18 who passed away. It said one was sick and her death may or may not have been D related. The older one was having lows all day. It was her first night alone in her new apartment. Her mom checked in with her before she went to bed. Her daughter said her bg was up and she was turning in. When her mom called in the morning there was no answer. She never woke.

All my feelings, empowerment, confidence, certainty, my little piece of bliss was gone.

How could I be carefree? How can I not worry? The possibilities are tragic. Things can go completely wrong.

Am I stupid for taking a break from worrying?

Am I underestimating D and what its capable of?

All parents worry about their children.

Their first day of school, going to college, getting married, a tummy virus, a bad cold, falling off the slide and other day to day things our kids get into.

But worrying about our children dying? Daily? In their sleep? While at school? While swimming?

Wondering how they will manage on their own when they are in college? If they will make it to college?

Its all too much.

Diabetes has left me feeling empty today.

Deflated.

Scared.

Sad.

Angry.

Numb.

I feel stuck in between 2 worlds.

The one where I want to let our family feel carefree and always blissful, but its never that simple.

Please welcome....

2011-08-09T20:08:00.001-07:00

My new friend, fellow D mama, and Vegas hot mama Racheal. Her daughter Elyssa was diagnosed last month.

She writes a blog and as you know, can use all the support and love!

Click here and shoot over and say hi.

Double Whammy!

2011-08-08T11:25:00.001-07:00

Today I have the pleasure of guest posting in two places! Well actually one is ME the other is Justice and Synsyre!Now ever wonder how we manage Diabetes at school? Well its your lucky day baby! I'm guest blogging over at D-Mom Blog today!So clicky click here and check me out! Wait there's more....Cara my awesome friend, started a project she explained to you guys last week called Your Voice. And todays folks sharing their voice? Yup! Justice and Synsyre!!So click here to read how they feel about a life with D. Warning. You may cry. My linkies aren't working, sorry!Copy and paste!http://countrygirldiabetic.blogspot.com/2011/08/justice-synsyre.html?spref=fb&m=1So go one and read, let me know what you think!

Weapons At The Ready...

2011-08-06T12:05:00.001-07:00

I can see it.

I know there's a way to fix this.

But to get there will be either a battle or small fight.

But I am prepared.

In the dark, I accumlate my weapons.

I set them out, side by side.

My Superhero is ready, he takes it all in stride.

We walk fast, trying to attain our goal with haste.

Its time.

I rip, pull and throw.

I saturate the new location.

I get systems ready.

I push it through.

It is working.

We return to our area of comfort.

Waiting for wait will happen next.....

That my friends is a site change in the bathroom of a movie theatre.

"Best Night Of My Life".

2011-08-04T00:38:00.001-07:00

That's how Justice described tonight.

I myself don't even know where to begin! Seriously this post is gonna be all over the place I'm sure cause I'm still on a high, from tonight.

Tonight (Wens night), I had the absolute pleasure of hanging with....

George (@Ninjabetic), Scott (@scottkjohnson) aka D Scott (Justice is responsible for that one lol), Allison (@amblass), Mollie (@curemoll), and Katie (@1littleprick). (My phone isn't letting me link, sorry!).

I had to add everyones twitter handle cause that's how I met all these AMAZING PWDs.

If you don't tweet. Get on it! You have no idea the amazing DOC that chills over there. Its where the cool kids are at ;).

Tonight we sat, we ate, talked, laughed, I think I teared up a few times, the boys showed off dance moves, compared pumps, discussed Glee, and other crazy things that you...well you had to be there.

It was honestly one of the most memorable nights I've ever had. I felt like I was with family. We all just meshed together, and we got each other! Instantly.

Only downside of the night was when J got a lil testy and had an attitude. I assumed he was low? NOPE. He said "I just hate goodbyes.". That's LOVE.

Justice ADORES his new uncles George and Scott. Seeing him bump pumps, compare Dexs, see who's had the "lowest low", it warmed my heart. He sees that growing up and living an awesome life with D is possible!

I'm so grateful for him to have such outstanding role models!

I'm going to stop yapping and just post pics now cause I can go on and on and on about how much I love these people!!

Thank you all for being who you are, for being my friend, a role model for my son, for just being a fantastic person and PWD.

Moments like these make you see the awesomeness in a life with D.

Battling Pricks.

2011-08-01T20:31:00.001-07:00

I feel awful right now. I feel like maybe I'm hurting my son and of course the reason behind what I'm doing is the complete opposite intention.

I was reading Reyna's blog post, in where she mentioned endo saying maybe to cut down on testing. Our endo used to tell me the same shit. Then she said its working. Numbers are great and if HE is ok with it and you're ok with it, then ok.

But I went through our meter.

Holy fuck.

This past week...15 to 18x a day. MOST of them are while he sleeps. We have been having a crazy time with nightime basals.

When J hurt his arm last month the healing process took a toll, and bgs were out the roof! So we tweaked.

Then came lows.

So we tweaked.

Not as bad but still high. J's range during the day is 95-120 and nightime 120-150.

So I tweaked. Leaving basals but changing timing around, seriously crazy shit. Cause the Ping has the smallest basal incremement I couldn't go any lower or higher which is what was driving me nuts! Up to .725 caused lows, down to .7 caused highs! Finally I messed with the timing of things and got it!

No lows. No highs.

He cruises 95 to 105 all night.

That's a lil low for me at night. Even though we have Dex. 20% allowable margin of error is too close to a bad low if he's running in the 90s.

I prefer him between 120 and 140.

So apparently I've been checking him like mad. How I didn't realize it was that much I don't know.

Now some say well run him higher.

And some nights I do, not the 200s but upper 100s. But nighttime is a BIG chunk of an A1C, of their "control".

When hubby works I crash with the kids. Love being snuggled between them and having Dex on my chest. They love it too! Soundest sleep I get. I can run him tighter since I'm in his room, in his bed.

When hubs is off from work, I run him a bit higher, no higher than 180, this way I can sleep more and spend more time in bed with my man. I still check him atleast 3 times a night while he sleeps, that will never change. Atleast not that I can see.

I do this to achieve optimum control. Without lows. But I allow the 2 day "break" so I don't go batshit.

Justice hasn't said "ma you're checking me too much". And I know a lot of the day checks that are closer than 2 hrs together are because he didn't wash his hands, or he was outside playing and I felt low.

So now I feel well like shit.

Am I addicted to testing? Noooo. I just don't always trust Dex and sometimes I need to be double or triple sure...usually in the middle of the night.

I fear the worst. Even after almost 3 years I still do.

So I'm going to try hard to not check more than every 2 to 3 hours during the day (unless low or some insane high), and try the same for nightime.

I've decided to leave his basals at night where they are. 99 is perfect! But since its a little low for comfort and I can't achieve a happy medium..(its either 99 or 225) I'm going to give him a small 7gc bedtime snack. Probably yogurt. And see how that carries him. 100 with 7gc should put right where I want. Right? Ha. I know...

I prefer that to overnight corrections. And I know that those highs aren't good for his body, 8 hrs of 200s? I can't see that.

I also told J if I ask him to check his bg (unless I suspect something or he checks on his own, cause of feeling low or Dex) we will check meter together and see when last check was. 2 to 3 hrs apart from now on. We also set the alarm on Ping to help us keep track.

Will this work? I hope so.

Cause right now I'm exhausted, drained and feel like a complete shit right now.

He hasn't complained, or even mentioned it. And maybe its because of the insanity of the last few weeks with the healing and growth spurt. But either way I don't want him to feel burnt out, or to resent me.

Even though I know each check I did was because I care, love him and want to keep him safe.

Hope he and his fingers forgive me.

Find YOUR Voice! A Guest Post- Cara

2011-08-01T17:13:00.001-07:00

I met Cara about a year ago via twitter, when I met most of the amazing PWDs I know.

She has always been one of the most supportive, compassionate and honestly sweetest people I've met in the
D.O.C.

As usual trying to find a way to advocate for all of us and help those who may not have a voice (YET) in the D.O.C, Cara has come up with an awesome way for everyones stories to be heard.

Not just PWDs, D mamas, or dads. But CWD, cousins, teachers, siblings. Those who may not LIVE with the disease but live WITH the disease.

You'll even see stories from Justice and Synsyre featured!

So here's Cara to tell you how YOU can let YOUR voice be heard.

*

It started as writer’ s block. Really. Several months of diabetes burnout led to serious diabetes blogging issues. I love my readers and I hate not having anything for them to read.

So instead of the regular memes or posting about how I had nothing to post about, I thought I’ d try to find some guest bloggers. I love guest bloggers. I love to guest blog. But I wanted something different for my guest bloggers. For a while I have toyed around with the idea of having my mother write something for my blog.

She’s a non- blogger. She doesn’ t have facebook or twitter. She doesn’t even have an email account that she doesn’t share with my step- dad. But she has a story. A million stories about what it was like raising me; a child with type 1 diabetes.

That thought alone got my mind working. Diabetes doesn’ t just affect the person living with diabetes. It effects everyone around them. A child’ s teacher. A grandparent. A best friend. A sibling. The parent who doesn’t blog. The person with diabetes who doesn’t blog. Online we are a loud voice. We advocate daily. We support each other. But I remember when I didn ’t have the online community.

I didn’ t have the outlet to talk about how diabetes affected me The voices that we don ’t hear online are the voices that I hope to allow to be heard in the “Your Voice” project. There are so many lurkers in our community.

There are so many family members and people living with diabetes that are on facebook, twitter and sites like TuDiabetes, but don ’t blog. I want to allow those stories to be told.

Starting this week I am going to be posting at least 2 guest every week on my blog. I want all kinds of stories from people who aren’ t bloggers. If you have a child that you blog about and you want to let them tell their story (even if you have to type it for them!) or if you have a spouse that’s a non -blogger who would like to share with the online community. Remember, doesn’t matter the connection to diabetes, just that there is one. I’d love to hear your story.

You can submit stories to my email at beth2027@ yahoo .com .
Please put “Your Voice” in the subject line so that I know what I’ m getting. Also,if it is a minor child’s story, please let a parent submit it (so I know that they have permission!) . No story is insignificant .

Every voice deserves to be heard. More details can be found at:

http: //countrygirldiabetic .blogspot .com /p /info -on -your - voice- project. html

posted from Bloggeroid

A Most Synsyre Prayer

2011-07-31T23:29:00.001-07:00

I don't think a caption for this is necessary. Just take a close look at all the components of the picture.

Priceless.

posted from Bloggeroid

Stick Me Baby!

2011-07-29T19:58:00.001-07:00

Ok so this is the SECOND time blogger app messed up my post so now I'm a lil peeved!

Here is the abridged version:

Last week I won Shannons giveaway on the New Normal Life (Hi Shannon!), the giveaway was a Stick Me bag! Yes for D supplies!!

And it holds everything!!! Watch this:

Yes. It actually closes :)

Outside pocket insulated for Insulin! Score!!

Outside zippered pocket holds ketone meter, ketone strips, and one touch mini for just in cases.

Second outside zippered pocket houses sites, cartridges, IV 3000, IV preps, alchohol preps.

Inside hidden pocket I put a small zippered bag ( I got long ago) with pump and meter batteries, cartridge and battery caps, penny to open battery compartment and key thingy for Dex sensor and syringes.

And then the main stuff...
Ping meter, one touch strips, Aviva meter (I like second opinions) Aviva strips, glucagon, glucose tabs. In mesh pocket second multiclix, sweettarts, smarties and more candy.

This bag rocks!!!!

And yes you can get your own!!

Checkout facebook.com/stickmedesigns for pics and how to purchase.

Thanks Shannon and Stick Me...I'm soo loving it!

posted from Bloggeroid

Today We Celebrate...

2011-07-27T11:17:00.001-07:00

Everyday is a gift. Everyday we should celebrate.Everyday we should be thankful for all we have.A small bottle, filled with a liquid that saved my son.Allows him to LIVE.Allows me to watch him grow.Allows us to see him smile, play, and be the life of the party.Without this little bottle I would be only a mother of one. 90 years ago today Insulin was born.It changed the world forever.Mothers would no longer bury their babies.Husbands their wives.Sisters their brothers.It gave those with Diabetes a chance at LIFE. Everyday this discovery keeps my son alive.And millions of others.As I sit here and cry I remember the fate of those who weren't as fortunate. I feel like the luckiest and richest person on earth. Thank you Dr. Bantings for giving LIFE where the was not. Because we have Insulin, we have him....

Pump Pimpin' Schoolin'

2011-07-26T12:01:00.001-07:00

I will never forget when Justice first started pumping. Besides the insanity of basals, figuring out the right sites for him etc, he had an issue of where to put it.
He hated using the clip during the day. He didn't like to have to hold it while he did his business.
We tried a pump pack from 50/50 and he hated it. It moved, flopped, flipped, and flapped around.
And then I found it. Through Reyna and Laura.
TUMMIETOTES FROM TALLYGEAR!
Amazing is not an adequate word.
Justice LOVES everything Donna from Tallygear makes. She even made an armband for him with a window and velcro! He thought it was beyond annoying to wear the pump on your waist and site on your arm. And she handled that!
Donna has made pumping fun for Justice.
Given him confidence in showing off his pump and Dex. Not being embarressed by what's hanging off his waist or arm.
He can do everything with his tummietote or armband, he can swim, jump on trampolines, run track, and whatever else he desires.
I can't imagine using anything else to house his 2 "best buds".
I want to mention school. School is coming up and kids need something secure and yes stylish to wear. But they also need a way to keep a meter and some fasting acting sugar on them.
A book bag can get left behind, things fall out of pockets. But with your tummietote its secure and always at arms reach!
The school staff loves Justices "diabetes belt" as they call it. They know no matter where he is he has a meter and frosting, or smarties to take care of a low. It makes me feel that he's always safe at recess, music or wherever.
So while you're doing some school shopping this month or next don't forget a most important item!
A Tummietote!
Remember non pumpers can use it too!!
So head on over to Tallygear and get your pimp on!!
*These opinions are of my own and I was not asked to share any of this with you. But what kind of friend would I be if I didn't!?*.

Mind Yours! *Foul Language Warning*.

2011-07-25T02:12:00.001-07:00

Manners that is.
I'm not sure where in the blogging, tweeting, and facebooking equation people got the idea that it was acceptable to put down, criticize or belittle D Moms on how they "pancreate".
Hmm? Yes I'm talking to YOU. Sometimes you hide under "Anonyomous" aka "pu$$y", other times you have balls and actually use your name.
You accuse us of sharing our stories to scare others.
Accuse of us "inducing lows" to get that 6.5 A1C.
Tell us that no kid should be eating that much pasta.
Belittle us for posting pics of our kids site changes or the like.
Assume that because your kid doesn't go low when he jumps on his bed for 5 minutes that mine shouldn't either.
Judge us because we choose one pump over the other.
Start a pissing match because we went with one CGM instead of another.
Make snide comments because we use skittles instead of glucose tabs.
Rip us to shreds because we blog about our deepest fears.
There's soooooo much more that you've done.
To me. To my friends. Scratch that my family.
And guess what? It makes YOU the shithead not us.
You're the insensitive fucktard (thanks Rey), who has no idea what support means.
Clearly your fighting to find some of your own, but given your major personality flaw, hasn't found anyone to do for you what my girls do for me, and I for them.
So take this as a warning? A memo? A ettiquette 101? Whatever you'd like to call it.
You and your snide comments are not welcomed here.
Not on our blogs.
Not on our facebooks.
Not in our emails.
Not on our twitters.
Not on Google+ (which I'm sure no ones invited you too, for obvious reasons).
More and more I'm seeing comments on my "D sistas'' blogs and most recently a facebook.
So I thought I would take the time to say, on behalf of all us fabulous D mamas.
F OFF.
Clearly we are just too amazing for you to stand.

Justice Loves His Dex.

2011-07-23T14:53:00.001-07:00

So I started implementing "school work" for the kids this summer. To keep them on their toes.
One of Justices assignments today was to write about his Dexcom.
Why I love my Dexcom
By Justice Newell
"I love my Dexcom because it tells my sugar.
It tells me if I'm high or low.
It makes me feel happy.
I can name it.
It beeps so my parents can hear it.
When I don't feel low it tells me.
That's why I love my Dexcom!".
I loved seeing him so happy about his Dex but I did explain he would need to put more effort into his essays! This is school work folks.
He proceeded to tell me he truly loves his Dex.
I asked him if he would trade it for anything and he said..
"Only for a cure mom...".

D.O.C=Love

2011-07-22T18:56:00.001-07:00

War.
Fighting.
Blame.
Guilt.
Degradation.
Invalidation.
Hate.
Judgement.
Unsupportive
These words are NOT those associated with those of the D.O.C.
When I think of the D.O.C, the people in it, including Type 1s, Type 1.5s, Type 2s, Type 3s and everything in between I think of love, support, laughter, happiness, and as my good friend said today FAMILY.
So when people mess with my family, when they perpetuate hate, myths and other evils I am not happy.
We all know there are differences between all kinds of diabetes, we get that, and respect it. But differences or not we are in this game together.
The medias portrayal of Type 2s is becoming more and more demeaning, degrading and quite frankly pissing me the fuck off.
Are some type 2s diagnosed as a result of diet and or exercise or lack there of? Sure. And some are not. Why people are diagnosed is NOT the issue at hand. Where does this idea come from that its acceptable to name call, write shitty articles and place blame.
Trust me our community has enough to deal with.
Today we deal with this piece of work.
This article spews hate. Period. It gives the idea that our community is at war with each other. It demeans people I love living with Type 2 like my dad, my husband, Mike and others.
It also puts down our parenting skills, that we are in essence killing our children because we are letting them enjoy themselves and spread lies that our kids shouldn't have ice cream!
It sets us back when we try to fundraise for groups like JDRF who are working towards a CURE for all of us!
Who's gonna help us if they think we created this ourselves!
It let's society think its ok to treat PWD and CWD like criminals. Who have to be reprimanded when they enjoy something sweet.
It puts down the hard work that advocates like my friend Wendy, are doing to help those in need.
It hurts.
It hits my soul. My core. My heart.
Diabetes is not an easy road, its a disease that can take lives, limbs, eyes, friendships, marriages and our sense of peace and normality at times.
What it doesn't take away is the love, laughter and pure joy of life.
Because of the D.O.C I have found more of these things and am beyond blessed.
So while people like this write hateful articles, and try and turn us against one another, you remember that's not what our community is about.
That's not what you're about. Not what I'm about.
The D.O.C = LOVE.
Period.

My Gravity

2011-07-21T19:47:00.001-07:00

My husband. I mention him here and there but I haven't talked much about him on this blog. (I've been neglecting my persona one).
His name is Terrence but everyone including me, calls him Biggah(er) cause well he's bigger than most. He's 6 ft 8 1/2 inches. Yup.
He's 8 years my senior, and has a great sense of humor.
He makes me feel like the sexiest woman on earth even when I haven't brushed my teeth yet or cleaned the goop out of my eyes.
He is extremely protective of me and his kids. No one can say or do anything to hurt or put any of us down without him stepping in. Trust me you don't want that.
He's beyond smart. Compassionate, loyal, sensitive and really the most loving man I've ever known.
He's an amazing husband, wonderful father. He is my best friend.
We have been together for 10 years.
If you have been following my blog for a while you know we have been through more than our share of hard times.
I am the emotional, anxious, hysterical one. He is my calm. My rock.
I could honestly go on and on about how amazing he is. In every way.
Is he perfect? Hell no. But he's perfect for me.
He is also an amazing pancreas for Justice.
When Justice was dxed he had just been laid off, so I was working full time. So Biggah from day one (literally day one. Hospital wouldn't let J come home till we both could carb count, do shots, check bgs, ketones etc) has done it all.
I admit I do the basal changes because I was the one who found the DOC, read Think Like a Pancreas and pumping insulin but he is hands on.
Site changes, cartridge changes, 3am checks, carb counts, swagging, temp basals and all that.
I know when I'm out with the girls (which he insists I do 2x a month to get a break) that Justice is in good hands. No great hands.
He knows when I am burnt out. He knows when I need him to take over or when I need him to assist me.
Like last night.
J went to bed at a perfect # and ended up 340 double up. I knew it was a site issue. (While steel sets are amazing, sometimes when J plays wild, he may bang the site, causing a blood vessel to pop or something. Anyway clogged canula).
I asked him to assist me. We were already up watching Ugly Betty together, so I wasn't disturbing his sleep. He came in with everything I needed, looking at me deep in my eyes, as if to say " I know baby I know". We have had a rough few nights. Lows, highs, all different times, no rhyme or reason. We are exhausted.
As I prepared the site change, he just stroked Justices face, holding his hand.
Justice never flinches or complains about site change, except in his sleep. (Weird). He flinched. I saw his pain transfer to Biggahs. I saw Biggah feel helpless that he couldn't take this disease from him. I saw how much he loved his son.
I remembered the day Justice was dxed. Biggah asked the doctor with complete seriousness "can you do a transplant? I can give him MY pancreas". All the while tears streaming down his face.
At that moment I realized this imperfect, stressful, insane life I live, works...because I have someone taking the journey with me, who supports me, loves me, and as he says " wouldn't let me hit the ground, if he was falling himself".
My gravity.

ME ME ME!!!

2011-07-20T22:16:00.001-07:00

All the other D mamas are doing it...I wanna be part of the cool kids. So here goes...
Age: 29. Is it wrong to say I don't feel like I'm 29?
Bed size: King. Ummm my husband is 6 ft 8 1/2 we need it.
Chore you dislike: Are there ones I'm supposed to like? Well having 2 boys id say their bathroom is the worst.
Dogs: A chubby beagle named Niko :)
Essential start to your day: Hmm...a kiss from my hubby, hugs from the boys and lip gloss.
Favorite color: HOT PINK. :D
Gold or silver : silver and white gold for dainty stuff. But I am an accessories whore. Can I say that here?
Height: 5 ft. 2.
Instruments you play(ed) : None. Unless my voice counts? Its an instrument.
Job title: HBIC lol..kidding.
Kids: Two boys. 8 and 6. My everything x 2.
Live: Vegas. Ehh. I'm born raised and proud to be from Brooklyn. And yes I wanna go home!
Mom’s name: Vicki
Nicknames: Lex, Lexxi, Cakez (my sister) babygirl (Biggah) and Cookie. (Don't ask.).
Overnight hospital stays: Boys births, once pregnant with J for fluid leaking, infection when a teenager, Synsyres lung collapsed, and when J was little he had an awful stomach virus.
Pet Peeves: Fake people. Girls who don't eat. Being late. Sloppy drunks. Big kids drinking from bottles. When people judge me for how I look.
Quote from a movie: My Cousin Vinny. One of my fav movies ever:
"Imagine you're a deer. You're prancing along, you get thirsty. You spot a lil brook. You put your lil dear lips down to the cool clear water. Then BAM!!! A fuckin bullet rips off part of ya head, ya brains are laying on the ground in lil bloody pieces. Now I ask ya. Would ya give a fuck what kind of pants the son of a bitch who shot you was wearin?!".
Righty or Lefty: righty
Siblings: 3 brothers, 1 sister, and a sister in law who I've stolen from my husband so she's mine now too :)
Time you wake up: for the day or for checks at night?
Underwear: really? Think Sisqos hit in the 90s.
Vegetables you don’t like: love em all!
What makes you run late: Other people. (Joannes answer was so perfect I left it be).
X-Rays you’ve had: chest many times...
Yummy food you make: Everything. I can get down in the kitchen!
Zoo animal favorite: koala, and monkeys!

8 Letters

2011-07-19T21:52:00.001-07:00

Detached from the outside world. Trying to fit in. Finding your new normal.
Intense moments defining the next, variables ever changing.
All too real. A big daily dose of reality.
Bedtime. Scariest time of day. Restless waiting for the next check.
Eating requires weighing, calculating, being beyond prepared for what was once so simple.
True friends. Amazing group of people who fill me with love. Who make the other letters hold together.
Everchanging basals. Growth spurts, activity, school, the body reacting to all moments.
Stopping to appreciate the good. To be thankful for our technology, advancements, and what's to come. And ALL OF YOU.

Standing Still and Going Fast.

2011-07-14T12:27:00.001-07:00

Be in the moment. Work on THAT number. Don't let it overwhelm you or cloud your mind. Don't get swept in the emotions of it all. Remember not to take it personally.
HOW?
How do you do this? Can you do this everyday? All the time? Do you get swept up?
Can you live in the moment?
I can sometimes. Other times I wonder...how can I live in the moment when that moment compiled with the other ones can change the course of our future.
I've discussed this before. The thoughts of what can happen with repeated highs or lows at night. I know the what ifs. We all do. We try not to dwell on them or allow ourselves to become consumed.
Most days I don't. But sometimes....
Sometimes...
I feel like a failure. Even though I know its not my doing.
Apparently the healing process (Justice got stitches last week), causes insane high bgs. 300s everyday. Well I never. Not since MDI anyway.
I see him feeling awful, wanting to eat a carb loaded meal, or read a book without a headache. But he can't. His mind and body aren't how they should be.
I take a step back. Correct, comfort and calm him. We move on.
But when those moments occur everyday for a week, I wonder what mark they will leave later. Will they damage something needed?
People don't truly realize how much our bodies need insulin. Not just to eat. But for everything.
These moments are awkward in my mind. As time is standing still, and the number on the meter feels like an eternity, it also somehow moves time rapidly to his future.
All the moments of now are connected to the moments of "when".
I can't avoid it. I can't change it. It makes my days longer, and my nights endless.
The mechanics of management don't consume me anymore, they are our normal.
But the moments of now and how they affect "when".
Well that's what makes time stand still yet move faster than I could think.
And sometimes the "trip" makes me sick.

Go Go Gadget Flow

2011-07-12T09:27:00.000-07:00

This post was accidentally published last week. Wasn't ready yet. So now here you go :)Press video for song while reading post.There he is. My big boy. Doing the dishes. Yup his new daily chore. Mama loves it. Lol I watch him sometimes from a distance, and just think of how big he has gotten, how tall, how smart, how compassionate he is, or how much he's driving me nuts at the moment.Then there are time I look at him and see the Gadgets. The amazing technological advancements that he is damn lucky to have. We are damn lucky to have. The site. Connected to the pump. The pump wrapped in his kick ass tummietote. The tubing sliding down his arm, or peeking out from his pants.The sensor. The sensor stuck to him. Not moving for usually 2 weeks at a time. Leaving tan lines in shapes of large ovals.The Dexcom reciever. Wrapped around his waist here, in a My Pump Gear pack. Pushed to the back as not to get it wet from the dish water.It doesn't sound like a lot to someone who doesn't know. But it is. Its equipment. Medical equipment. On his body 24 hours a day. 7 days a week. 365 days a year.I love each piece of it. Without question. So does he. The Ping? I love the freedom the pump gives him to eat, to graze. To reduce basals for the bouncy house at the party or track at school. I love the way I can set a combo at the movie theatre for all the snacks he will be endulging in. Or how I can crank up his basal during those nightime growth spurt highs and then change it the following week. Specific times, exact doses. It works for him. We achieve awesome numbers and we definitely don't miss having to draw up insulin everytime he wants to eat.Dexcom? Probably one of my best friends. Gives me peace of mind when I need it and warns me when is trouble is brewing. I can honestly say I cannot imagine NOT having Dex in our Diabetes life. Basal testing, pasta and pizza, sleeping in, activity, seeing how fast insulin works, life saving beeps and vibrates. All of it. But sometimes, somedays, I miss my device free son. I miss his body without these things so evident, and very hard to miss. I'm grateful for them, wouldn't give them up, but I can't help but think of pre Device Justice. Playing and running around without worry of bumping his sensor, or ripping off his site.There are days when I contemplate going back to MDI for a while. But I know for his numbers its just not the best thing to do. His A1Cs would suffer I have no doubt. When MDI he ran steady between 7.0 and 8.0 never lower never higher. Endo was very happy. He was only 6 and then 7. I was happy. I thought wow how awesome I am! Ha.I know know those lower ones were not from control but lows. Lantus didn't work for him. He would crash at the drop of hat, which meant we couldn't correct highs. So he would cruise the 200s all night sometimes. Most times. We used to sleep. Still checked but we slept. But how bad that is for his body. Our endo was ok with a 200 all night. I am not. Now that I know what I know. We have been able to achieve A1Cs now in the 6s and I'm confident that's because of stable numbers not lows. He hated the pump the first month, even though its what he wanted. Despised it.But now? He loves it. He told me so. So how can I make a change in his management just so I don't have to see the devices? I can't. That's selfish bullshit.With with the tighter control of the pump I would not cannot give up Dex. If we were back to MDI maybe.But I think it. I do.When I'm cuddling with him at night, or hugging him in the morning, when his brother comes in screaming he knocked Js sensor off. All these times I am longing for the device free J.I guess all Supeheros have to have devices tho right? Or Gadgets as I prefer to call them.So for now we go with the flow.......

A Misbehavin' Winner Indeed!!

2011-07-08T18:43:00.001-07:00

Thank you all for participating in my second giveaway, and helping us celebrate one year of pumping and one year of blogging!
Also thank you for all the amazing comments and love. I truly am beyond thankful to have met you all and added you to my family. I love you all!
Now to the goodies.
Both these gifts represent both of my milestones. So before I announce the winner, here's what they're getting.
To celebrate pumping: 50 Blood ketone strips! Why? Cause well you can never have enough, and we all know especially when pumping these bad boys are god sends!
To celebrate a year of blogging: A custom Aveda gift basket hand picked by me. You all have given me a place of zen, and comfort over the last year so what better way to celebrate that than a little zen for you! Package includes: Rosemary & Mint body wash, body lotion, shampoo, conditioner, Mint breath fresher, Lip renewal balm, Calming body oil, Hand relief lotion, Foot relief lotion, Comforting tea, a candle, Rosemary Mint body bar, and for the advocates in all of us blue nail polish!
Now the winner.....
I decided to let Justice pick the number by random so here we goo....
THE WINNER IS....
LAURA!! FROM HOUSTON WE HAVE A PROBLEM! Justice picked lucky number 12!
So email me to claim your prizes!
Thanks everyone for entering and for all the love! Promise to do another one again soon :)

Giveaway Extension!

2011-07-07T13:15:00.001-07:00

I have decided to extend the giveaway till Monday the 11th! There were many D families on vacation this week, as well as away at Friends for Life and I want to give them an opportunity to win too!
So click here and follow the rules. Contest ends Monday the 11th at Midnight. I will announce the winner the 12 at some point in the day lol.
Good luck!

Happy Birthday J.M.P!!

2011-07-02T05:50:00.001-07:00

Wow! Has it been a year already? A year of my bitching, moaning, crying, non stop swearing, half ass posts via cell, and the colorful way only I can tell a story?
A year of YOU. A year of support, love, comfort, same same, and friendship.
I have made some of the most amazing friends because of this blog.
I have gained back some of my sanity because of this blog.
I have learned its ok to cry because of this blog.
Ok to laugh.
Ok to to just be in the moment.
I've found a group of people who love me for me.
Who get the D mama in me, but embrace the crazy biatch that I naturally am.
I want to thank you. Thank you for loving me. For loving my family. For always being here when I need you most. For letting me know it will be ok.
I hope I give you all atleast a quarter of what you have given me.
But wait!
Its also been 1 year since Justice started pumping. 1 year ago today he was on the Accu Chek spirit. It want until Sept we switched to the Ping, but still 1 year since we said bye bye needles!
It was so hard at first I won't lie. I wanted to bash my head in. But I got through. We got through. (Big huge thanks to my girly Sarah).
Seems like a monumental week doesn't it?!
Sooooo I wanna celebrate. Celebrate the D mama, D dad, or PWD in us/you and the YOU, YOU.
I have special gift to give away to one lucky winner. Something to help with the D stuff and something to make your day a little better.
Its a surprise! But trust me the value of this gift is high.
Leave a comment here before Thursday July 7th at Midnight. Winner will be announced Friday night July 8th at Midnight.
Leave your name if you don't have a blogger account, and I will annouce the winner July 10th. If winner doesn't respond in 24 hours I pick another.
1 entry for comment. 1 entry for FBing it. 1 entry for blogging it and 1 for a tweet.
ONLY two rules are you must be either a PWD, a D parent, D grandparent or something like that.
Second rule..just for fun. What's your favorite memory or blog post from Justice's Misbehaving Pancreas? Or your favorite thing about this blog?
Love you guys. Good luck!

And THANK YOU.

Justice's Song

2011-07-01T13:19:00.001-07:00

We had another rough nite. J comes to me and says "check me now. I feel like I'm 36." Guess what he was? 37!Today is a better day. He said he wrote a song about Diabetes. I guess its a form of therapy for him. Well here it goes.

Reality Bites...

2011-06-30T15:13:00.001-07:00

This is not a feel good, happy go lucky, yay me, kinda post. You've been warned.
I know, I am aware, I get it, that Diabetes is unpredicatable. It swoops in and fucks things up when you least expect it. It makes you frustrated, scared, angry, confused and emotions that may not even have any words for it yet. But I've sure as hell felt them.
39. I don't like that number. That number leaves Justice feeling "like I'm trapped in a bowl of jello and can't get out".
But when that number occurs just 5 minutes after an 86, just 15 minutes after he consumed a cookie and a juice box, and 40 minutes after I turned his basal down...well that scares me to my core.
It was like reality just hit me in the face. Over and over again. Dex had a sensor error 1 and we were waiting for it to catch up again so I couldn't rely on it, so I kept checking him every 15 minutes until he was over 100.
But it wasn't 15 minutes yet. I wasn't checking him yet. He felt it come on. He felt like his body just went through hell and back.
He collapsed on my bed, holding his hand out to me saying "check me NOW!". Of course I did.
When that reading came on the screen, he was scared. He didn't understand how it all happened so fast, and after all those carbs and no basal. I didn't either.
The what ifs ran through my head last night. The fear of hypos came back to me, thoughts of Hallie's nightmare, thoughts of life before, life now, and I broke down.
I lied in Biggahs arms and just cried. It was now almost 1 am. The kids had finally fell asleep. Justice was scared to close his eyes. Synsyre was comforting him. The house was not as it should be.
I let him run a little higher last night. He needed sleep and so did we. Even with that I checked him every 2 hours. Watching him turn, breathe, talk in his sleep, smile. I thanked GOD everytime he did.
This disease can tear you down. It can make you feel so unsafe, so unsure and ruin a moment in the blink of an eye.
Its been almost 3 years and I am at a point now where the mechanics of it..well I got it. Site changes, cartridges, ketones, sensors, carb counting, all the craziness that can occur when swimming or eating pizza..I got that. I'm not scared anymore of the HOW TO's of it. I've mastered that shit. I feel good about it. It sucks. Its not the normal we used to have but we make it work.
But seeing my child hurt, fearing the worst, wondering if he will wake up in the morning, if he will have his eyes as an adult, if him and his brother will resent me for always being tired and let's be real sometimes a bitch due to all the stress, if he will pass out when I'm not there, have a siezure in his sleep, feel like its too much for him, or like he's been too much for me...those feelings? They are with me. I don't share them often, don't speak of them much with others, I let the world see my tough advocating mama pancreas self.
Why? Cause we must. For our kids. For our spouses. For the world to know Diabetes cannot stop them from reaching their goals and being anything less than they would without D.
But its there.
When I'm partying with my friends? I check my phone every 5 min to see if my husband text me with a bg.
When I sleep thoughts consume my dreams, until my alarm goes off every 2 hours to ensure its not a reality.
When I see Synsyre staring at his brother crying or getting poked with a needle.
When he's in school and the teacher intentionally leaves him out.
When we are online to eat and he's crashing, and a stupid ignorant bitch pushes past us to pay even though she heard manager say please come now.
When my friends complain of exhaustion.
When other kids can swim without stopping
While the movie theatre is filled with children just inhaling popcorn without a care in the world.
While I watch my supply of sensors diminish no clue where more will come from.
When my son only 8 asks me "why?" "Why do I have to live like this? Its not fair mommy".
When simple things become complicated I long for the days where I didn't give it a second thought.
But I keep on. We keep on. There is no other option.
As I watched the You Can Do This videos, I thought damn right we can!
But I really wish we didn't have to.

YOU can Do This and a Dancing 5K!

2011-06-25T19:55:00.001-07:00

Hi! Omg what a day. The boys and I all have infections and are on antibiotics. My laptop is still broken and internet not working. But there are TWO amaze balls projects we had to get in on!!One is the Virtual 5k started by the awesome Reyna's sister Tara!! And the other is the You Can Do This Project started by the always lovely Kim over at Texting My Pancreas. Its 110 here so walking outside wasn't realistic soooo my boys danced till Justice got low..which was about 40 minutes. We have more dancing to do baby!! Here's a glimpse at my cuties getting down for a CURE! We will be dancing all weekend till we reach the dancing equivelent of 5k!And here's a video of me and the boys letting YOU know YOU CAN DO THIS!! ....wait!! Just as I was getting the link for me and the boys video...I saw one my original ones somehow uploaded!!! Soooo you get two for the price of one baby! Ummm the video is sideways! UGH! But you'll understand it lol..Hope you enjoy. Hope I helped someone. Hope you all know what you mean to us.Love you guys!

YO.

2011-06-20T02:55:00.001-07:00

Oh how I have missed you all! I just haven't felt like me lately. D is being D nothing out of the ordinary that is causing this really.
I think I'm just onto the FUCK DIABETES emotion of this disease. The neverendingness of it has got to me recently. I'm sure I will get passed it but some days are harder than others.
I honestly almost punched a biatch in the face on my birthday...all D related. Truuuuust me she deserved it...but I didn't. Stupid husband and his being reasonable. Lol.
I need to tell the whole story and I'm trying to VLOG it but my phone has decided not to let me upload anything..along with my YCDT video. Ugh!
I just wanted to check in. Say hi. Tell you all I'm thinking of you. I miss you. Love you. I'm trying to read all the blogs and comment but with the kids home now its just hard.
But if you need me you know how to find me..I am a texting whore and love phone calls so make it happen!
I'm staying busy with JDRF fundraising and being on the Walk committee..lots to do! In the meantime back to working on uploading these VLOGS....
XoXo
PS. I am working on more shirt designs, and other items. We have added a few. Please let me know if there are any glitches or items don't look as they should. I mean sheesh I'm doing this from a phone! Click here. Thanks! Muuuuah!

Grace Inspired VLOG by Me

2011-06-03T16:16:00.001-07:00

The fact that I'm posting this is HUGE.But I am glad I decided to do it. Please don't be cruel.Hope it makes sense and you excuse my ugly cry face.

When...

2011-06-03T02:57:00.001-07:00

When your D kiddo wont come over 85 for hours while he sleeps, you know things are not looking good.
When he is pushing the honey sticks, juice and tabs away, you know you must grab the glucagon just in case.
When you're home alone and Dex is beeping low arrow down, you rely on the help of your youngest child.
When he is mad at you for waking him up, even though he knows you had no choice.
When you are praying to god with every breath you take, to keep your son safe..
When the the medicine that is supposed to save his life threatens it.
At 2am that's when..

A Response From The CDC!!

2011-06-01T18:19:00.000-07:00
Ms. Newell,
I appreciate your message very much and agree with you that
we need to make an editing change on p. 22 of "Through the
Eyes of the Eagle," which we will make with the next printing.
Thank you for bringing this to our attention.

The "Eagle Books Series" were written for Native children
about 10 years ago by a lovely community health
representative on the Nambe Pueblo reservation, very
concerned about her community, including the future for her
own grandchildren, as she worked with many people with and
at risk for type 2 diabetes. The stories have been popular in Indian Country and, in recent years, other communities and
teachers working with youth also at risk for type 2 diabetes
have enjoyed the stories. We realized that the audience for the
stories was growing and could include children with type 1
diabetes, as well. With our last printing of the books, a new big
size for teachers and community leaders, we edited the
"Introduction" and the last page of the books to read 'to
prevent type 2 diabetes' so that readers would know this was
what was meant. As you correctly note, type 1 is an
autoimmune disorder and it cannot be prevented at this time.

All children and youth with diabetes, type 1 or type 2, are very
close to our hearts and our mission in our work at CDC. We are
excited about a new book, following on the heels of the Eagle
Books stories, that will soon be released. The youth novel,
"Coyote and the Turtle's Dream," features a group of middle-
school age children engaged in solving a mystery of low water
levels on their reservation, with health messages woven in.

For example, in the book, Rain that Dances (R.D. or Rain to his
friends), works with the local convenience store owner to
place healthy snacks in the front of the store. Because we also
wanted the children to learn about type 1 diabetes and
differentiate it from type 2, the author modeled a character
named "Arianna" after a dear friend of ours, 11 years old, who
was diagnosed with type 1 diabetes at 2 years of age. Arianna, in real life and in the book, is a wonderful teacher, excellent
friend, and terrific detective who collaborates with her friends
to solve the mystery and help restore balance in the
community. I would like to send you a copy when it is printed
in a few months. We plan to develop graphic novels along the
themes of the book later this year.

Thank you for your insightful comments. We send our best
wishes for your child, your family, and your important work
with JDRF. Please feel free to call me (770-488-5285) or write
(dxs9@cdc.gov) with any questions or comments, and let me
know if you would like a copy of "Coyote and the Turtle's
Dream" when it's ready.

Dawn Satterfield RN PhD
Native Diabetes Wellness Program
Division of Diabetes Translation
Centers for Disease Control and Prevention
dxs9@cdc.gov
http://www.cdc.gov/diabetes/projects/diabetes-wellness.htm

I spoke with Dawn for about an hour. I spoke on behalf of not only people with Type 1 but Type 2, and LADA as well. I explained that Type 2 is being portrayed as a disease only obese and inactive people get, and thats simply not true. By placing blame we are making these people feel isolated and alone, and thats not the right approach if we want to help them.

I explained adults can and do get type 1 and it is not just a childs disease.

I also explained our children can eat sweets in moderation just like any other kid.

I also addressed where the book said " Diabetes is not a good thing". I know D isnt something we would choose for our kids or ourselves, but that doesnt make life any less amazing. My son can and will achieve all his goals Diabetes or not. Some of the most amazing people Ive met are because of Diabetes!

She not only said she understood, but agrred and would contact the writer and bring up these points! And contact me with additional questions and information.

I have also learned JDRF does not have these books and never havve, the Nevada Diabetes Association says they have them in storage and donated some to the libraries but insist Justice didnt get them from them. Yea Im not diggin that answer either.

Stay tuned....Im not finished...

If It's True, Its On a Tee...

2011-05-30T19:41:00.000-07:00

Sent from my mobile. Enjoy.
_____________________________________________________________

I did it. Thanks to my amazing and supportive friend Cherie (who I love) I got my website up and running.

Quick recap of the day first..Cherie picked us up to come hang in her pool..well the kids..we were sitting down swearing like sailors and laughing. Last year we tried to disconnect J for swimming. Remember that? He was on the Spirit so we had no other option (NOT waterproof). Well he hit 70, I carbed him up, and then 407 with small ketones. Worst day ever. Well you know..Next time we bolused the basal he would be missing and...yup the worst 44 Ive ever seen. He almost passed out. So summer is here. We are PInging now! (A year in July), and its waterproof. He bathes with it, runs in sprinklers so why not swim? Well he did! For about 30 min. He was 195 when he started. He hit 160 and I went for it. PUMP OFF. 2 hours later...swimming over...bg 106!! Haha! NO LOWS! I thought of Reyna alot. "For fucks sake", I cant imagine hockey! SHES MY HERO.

So its dinner time and hes 220, site lost all stickiness so I pulled it and a bleeder! Grr..activity does this to us alot.

Anyhoo all in all a great day! D DID NOT INTERFERE ONCE AND cherie always makes sure she has carbs hand, and carb counts available. Makes me happy!

OH! So the title....after the kids got outta the pool we went to the PC and got it set up....thats right!! "Blood NOT Glitter" shirts are available!!! And some really cute others I made.

There will be some artwork by Justice done as well but its a process scanning them in and editing them.

So keep an eye out for more designs soon!

Shirts are done through Cafe Press, so the commission I make goes all to JDRF!

Check em out, I hope you guys like em!!
www.cafepress.com/MisbehavinTees

and to donate directly to my team Justice's Pancreatic Avengers:
www2.jdrf.org/site/TR/Walk-NV/Chapter-Nevada4356?px=1362013&pg=personal&fr_id=1581

Errors, CDC, Eagles, and Justice

2011-05-27T14:36:00.001-07:00
I am blogging from my cell. I couldnt wait for a computer. This is TOO important.

Justice needed a book to do a school project. So in my haste I grabbed one that we were given I think at a Diabetes function. I believe it was ADA. Definitely not JDRF. (I double checked with em.)

Justice comes running into the living room "mom! IM SO MAD!! This book says if kids make changes they wont get Diabetes!

Say what?!

I read it.

No cant be right. I just worked out, theres sweat in my eyes. Let me read it again.

And this is what I see on page 22 of "Through The Eyes Of The Eagle" by Georgia Perez;

"I am sad because this makes people get sick. They are not as healthy as they can be." said the Eagle. "Many of your elders are sick now with a disease they call Diabetes.

And the young chiildren will get it too unless they make changes in their lives".

HOLY ____!

This book is distributed by the CDC in hopes of spreading "awareness" and preventing Diabetes.

Great. But where is the correct info? Where does it explain type 1 and type 2? And that type 1 CANNOT be prevented?

It doesnt.

So I called the CDC. Filed a complaint. And will be following up next week.

It is our job to advocate not just for our kids but all PWDs.

My SKINNY and ACTIVE father was just diagnosed with Type 2. His doctor is baffled.

My son's type 1 could not be prevented nor cured with diet and exercise.

What can be prevented is misinformation!

**UPDATE**
We found a couple more books in the house, I've attached images along with the book's title and page number. The books provide easy-to-understand information but are written specifically for the Native American population, in hopes of raising awareness of the Type 2 epidemic their culture is facing. The wording used is simple & can be confusing, hurtful & even dangerous. It perpetuates D myths.

Please help me get this book either corrected or taken off shelves!div>

"Eagle Books" Series
BY GEORGIA PEREZ

THROUGH THE EYES OF THE EAGLE BY GEORGIA PEREZ PAGE 22

Tricky Treats by Georgia Perez page 20

page 11 of Knees LIfted High

Page 12 of Knees Lifted High

page 15 of Knees Lifted High by Georgia Perez

CALL 1800 CDC INFO (800 232 4636)
EMAIL: CDCINFO@CDC.GOV

PLEASE ALSO LETS YOUR LOCAL JDRF AND ADA KNOW NOT TO GIVE THESE OUT!

No More Unwelcomed Guests!!!

2011-05-21T20:58:00.001-07:00
This is our new unwelcomed house guest. It decided Justice needed something else to worry about. Heres the best description I could find.

"Pityriasis rosea is a common, self-limited rash that typically
occurs in healthy adolescents and young adults. The
appearance of the rash is striking and often causes concern
to the bearer and family, but it truly does resolve on its own.

Pityriasis Rosea Facts
The cause of pityriasis rosea is unknown. Studies looking for
a viral or bacterial origin are not conclusive to date. Although
its cause is unknown, the rash itself is associated with the
following characteristics:

Pityriasis Rosea Rash Appearance
Often the rash starts with a "herald patch" -- a single, 2- to 10-
cm round/oval lesion which can occur anywhere but often
shows up on the trunk. The herald patch often looks like
ringworm. Within a few days to several weeks, smaller
lesions appear mainly on the trunk but can spread to the
arms, legs, and face. On light skin, the lesions are salmon-
colored, and on dark skin they arehyperpigmented. These
eruptive lesions are typically oval and the long axis of the
oval is oriented along skin lines. A fine, tissue-like scale stays
attached to the border of the lesion. A typical eruption lasts
six to eight weeks, but it can persist for five months or more.
The lesions may be very itchy.

Atypical Pityriasis Rosea Rash Appearance
While the above description is typical, pityriasis rosea does
have several atypical forms. In younger children, pregnant
women, and people with dark skin the rash can be more
papular (bumpy). Vesicles and wheals can also occur in
infants. A number of oral lesions can occur during a breakout.
Also, at times the rash can occur on the whole body."

It started exactly like that. One spot. I was worried. Took a pic and sent it to Wendy (RN baby) who agreed I should have it checked out. So we went to Quick Care since its closer than our Pediatrician. Unsure they gave us an antifungal. "If it gets worse or goes away and then spreads go to your doctor".

It went away! And then the smaller ones popped out. All over his neck, chest, back, and lower region. PCP took us right away and gave us the above diagnosis.

Phew! Nothing dangerous, or contagious.

But they warned cold symptoms are common. In a type 1 that means...yup. Wonky bgs. Ive seen more 200s and 300s in the last week, than I have in the past 10 months!

Random. Different times. Different days. Its crazy. Thank god for Dex, I can see an up trend and raise basals. Thats not the hard part though.

This is: "Mom. I look gross. I am not wearing a bathing suit with these spots!!". Tears and more tears.

My heart is aching. He is constanty looking in the mirror worried over them, and theres no medicine to make them go away!

Has anyone dealt with this? He has enough on his plate with D, and these insane bgs, he does not need to worry about how he looks! But I understand. They do look pretty bad. Kids are cruel. Pool season is here and my baby is upset and feeling insecure.

Seriously. Enough with these unwelcomed guests!!

The Day I Got Hurt by Justice

2011-05-16T16:37:00.000-07:00

Sent from my mobile. Enjoy.
_____________________________________________________________

Some of you may have heard last week on #DSMA Live Justice talk about an essay he did at school. The assignment was to write about a day he got hurt. He picked his dx day. At first his teacher told him that wasnt him getting hurt, but he convinced her IT WAS.

Here it is.

"Diabetes Day".

"I got a disease on my birthday. It all stared on my birthday. It was fall. We had a vacation to my grandmas. My stomch hurt all the flight. I also urated my pants.

When I was at my Grandmas I was vamating. I ate nothing. My legs felt like jello. Mom called a amabalce. I was thirsty. They made me eat ice.

My doctor said I have Diabetes.

Thats the time I got hurt".

By Justice Newell

Blood NOT Glitter.

2011-05-15T19:27:00.001-07:00
Apparently I write quotes now too. I said this to one of my favorite Dmamas. And its true. I thought it worthy to share with all of you.

Yes. Shirts are in the process of being made with the quote. Ill keep you posted.

''Sugar coat all you like. When I prick my kids finger, I see blood. Not F-ckin glitter.''

Alexis. D mama. Shit talker extradonaire.

#Dblog week Post 7--Ive learned SO MUCH.

2011-05-15T02:54:00.000-07:00

What weve learned - Sunday 5/15:Last year, Wendy of
Candy Hearts made a suggestion for this year. She
commented I think Day 7 should be a post about stuff
we've learned from other blogs or the experience of coming together online...today, lets do just that!! What have you learned from other blogs - either this week or since findingthe D-OC? What has your experience of blogging the DBlog Week topics with other participants been like? What has finding the D-OC done for you? If you'd like, you can even look ahead and tell us what you think the future holds!

_____________________________________________________________

I wish I had my computer, cause this post would be longer, have links to some of the amazing posts I have read this week, the amazing people who have come into my life because of D, and so much more.

But Im limited to my cell and this week killed my fingers!
So I will do my best with what I got.

Heres what I have learned from the DOC this week and just in general from your awesomeness.

Support.

Love.

Compassion.

Humor.

Empathy.

Courage.

Strength.

SWAGin.

Honesty.

Advocacy.

Differences in D management.

Differences in insulin pumps, sites, cgms.

D Prom dresses.

Bears with candy on their asses.

Diabetic Rhinos dont need insulin.

Bacon is always good.

Its not just Js fingers who are blistered.

D camp is amazing.

Pudding at night is a no no.

"You can fix it and try again".

Piggy banks can be used for strips.

One Touch read upside down can cause a heart attack.

Pods are cuter on baby tushis.

and Its ok to be ME.

See? The DOC is a melting pot of all the above and more!

The greatest message is...We are all in this together.

I love you all.

Thank you Karen for this amazing week..

Thank you DOC for being our ''so much more than silver lining''.

Thank you all for sharing your stories.

For listening to ours.

And for truly getting it.

In the words of my amazing son "Lets play the game".

Chronicles of D-Boy and Ribbon

Now Hiring.....

I OWN It.......

And He Knows It.....

A Repost - It's More Than Just a Number to Us.

A Repost -- It's not just a number.

Its Not The Why, But The How....

We Lead The Way.........

On The Right (GI) Track...

A Repost. I Miss It...

The Anatomy of a D-Mom.

Getting To The Bottom, of The Bottom Issue...

It Changes Things.....

JDRF Walk 2011

A New Level Of Low, at The Endo....

I Dont Wanna Play This Game!

The Lonely Shell...

World Diabetes Day 2011. Blue Heels.

28. #DBlog Day 2011

Diabetes Awareness Month, Starts at Home.

Our Diaversary, and Theirs.....

9 Years Ago Today...

Tomorrow's The Day- Prayers Appreciated.

New Look, New Name,

Lucky 3 Winners!!!!

TallyGear and Justice Presents.......

NO D Day 2011-Shoes & Smiles

Wordless Wednesday---Support Swag

Thank God For Synsyre.

For The New Travelers....

Best. Friday. Giveaway. Ever! CONTEST CLOSED!!!

Walk Project 2011- Help?

He Aint Grown, But Him Growing...

Alopecia Induced Swagga

Do I Dare?

Joe, Lets Tango!

A Repost: Invisible Illness Awareness Week.

**Update**

Calling PWD or Your CWD- "Normal".

Where I Was...9.11.01

What Matters?

Synsyre's Endo Appointment. YES. Synsyre.

Fear.

Justice **UPDATE**

Who Says' Theyre Not Perfect?

Diabetes Art Day 2011: My Therapy during this time.

Scared, Angry, Overwhelmed.

If It Was You.

Wanted Care free, Blissful, (Its Never) Simple Living.

Please welcome....

Double Whammy!

Weapons At The Ready...

"Best Night Of My Life".

Battling Pricks.

Find YOUR Voice! A Guest Post- Cara

A Most Synsyre Prayer

Stick Me Baby!

Today We Celebrate...

Pump Pimpin' Schoolin'

Mind Yours! *Foul Language Warning*.

Justice Loves His Dex.

D.O.C=Love

My Gravity

ME ME ME!!!

8 Letters

Standing Still and Going Fast.

Go Go Gadget Flow

A Misbehavin' Winner Indeed!!

Giveaway Extension!

Happy Birthday J.M.P!!

Justice's Song

Reality Bites...

YOU can Do This and a Dancing 5K!

YO.

Grace Inspired VLOG by Me

When...

A Response From The CDC!!

If It's True, Its On a Tee...

Errors, CDC, Eagles, and Justice

No More Unwelcomed Guests!!!

Update

Justice UPDATE

Mind Yours! Foul Language Warning.