A Tired Father’s Rant about “Diabeetus”

meterEvery once in a while we all have to let off a little steam, especially after reading several posts about so-called “Diabetes“, or what people refer to as such.

For people who don’t know:

There are 4 Types of Diabetes, but in this post I will only be speaking on Type-1, and Type-2. Type- 2 or “Diabetes” as it’s commonly referred to because it is more then twice as common then Type-1. Is what everyone thinks of anytime the word “Diabetes” is mentioned.

The posts that I read earlier all say the same thing..

“Diabetes can be cured”    “Diabetes can be managed well enough that it will eliminate the need for medication”

I’m sorry but this is just purely FALSE

                                             and is what makes my daughter’s fight that much harder.

Type-1 Diabetes is an auto-immune disease.

                  Not something that was done from poor life choices, despite public belief.

We’ve all seen the commercials, it mentioned in our favorite Television Programming. Diabetes is from not exercising, and a poor diet.

Type-2.. maybe

Type- 1?     No

No matter how much she exercises, no matter what she eats, no matter how great a pancreas my wife and I are… she will ALWAYS be a Diabetic…

Unless, sometime in the future doctors find out what causes the body to turn on itself and destroy its own pancreas.

Even with a transplant… what caused her body to attack itself to begin with, will only do the same to a transplanted pancreas, eventually.

False, or incomplete information like this is a disease itself.. plaguing not just our country, but the entire world. Our countries medical field just isn’t properly trained to handle this disease.

To me, Diabetes has to be one of the most misunderstood diseases in our entire society. Breeding only ignorance and more misinformation that parents like us have to deal with, and that kids like mine have to endure.

People often say, why do you call yourself  “the Mad D Dad”?

It’s simple,

because, on a daily basis I have to keep myself from choking the very life from the lungs of idiots, and they’re ignorant, uneducated and sometimes downright callus remarks.

wilfred

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VelociraptorType-1 (Original) – Song I made for my daughter

After helping make the mother’s day song, I was inspired by her enthusiasm and love for

music. That I decided to make her a song. I had a conversation with her that I recorded

without her knowing. Took some sample bites from that convo, chopped them up added a

beat and this is the result.

When she woke up this morning, I was excited to let her hear what I had come

up with, and the look on her face alone made the sleep depravation well worth it in the

end.

Today though, I suffer from that old Ancient Chinese disease..

Dragon Ass.

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Happy Mubber’s Day! – By Brooke & Tristy

1WORDPRESS

So this year for mother’s day I thought,

Why not doing something she’ll never expect.

With the help of my 2 kids we set forth on a plan. It was a very good plan, or well thought out, but it certainly had potential for awesomeness.

Then I thought, oh what the hell, let’s wing it and see how it goes.

If it fails, we could always go to Macy’s and get her another purse, and some flowers.

After 2 grueling hours of trying to get them to understand how a microphone works, and how every other piece of equipment works we came up with this masterpiece.

Prepare your ears for the down right brain tickling gnarlyness that is….

Brook & Tristy.

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the Cupcake…

unknown artist <3 whoever you are because this looks like my family to the T.

unknown artist <3 whoever you are because this looks like my family to the T.

To people without kids this story may seem a little melodramatic.              Personally. I don’t care.

To anyone with children, I’m sure in some ways you can all relate, minus the type-1, unless your child in fact is also a T1.

The other day, my wife, and I were sitting outside on the porch swing. Enjoying a rare moment of beautiful weather, a cool breeze, and utter silence (other then the birds chirping which was more then welcomed.) Sugar Britches was squeezed between us, like that last stray Crayon that never seems to fit back in the pack right.

I should have known something was bothering her because she hadn’t spoken a word in almost 10 minutes, and if you knew my daughter… that’s scary.  As I said though, these moments are few and far between so I didn’t want to ruin it.

I didn’t have to.

Dad,  she said staring down at her interlaced fingers, but didn’t say anything else; as if waiting for my permission to continue.

“yes..?” I retorted in my semi-dazed out, still lost in thought tone.

Everyone in my class today got a cupcake except me.

Immediately attention was regained by myself, my wife, and the two grizzly bears that live inside every parent. Emerging like an exploding volcano when someone messes with their kids.

Excuse me…

She repeated herself, which just intensified the boiling blood, hair standing on end, Bruce Banner turning into the Incredible Hulk feeling that was pulsating deep inside my chest. I couldn’t believe my ears, so I sort of reiterated, just to make sure I hadn’t misheard her for a 2nd time.

Like EVERYONE else in the class got one…except you?

Yes.

Did they give you anything?

Yes.. They gave me some crackers

In that exact moment I had envisioned myself being 20ft tall, ripping the roof off of the school and pulling a King Kong on the entire staff.

How in the world could they ever justify this?

Is this the Socialization they said we’d miss out on from Home Schooling? What constitutes a crime of passion? How do you get blood out of clothes anyways?

All of this was running through my head at once.  Especially since we have told them NOT to do this sort of thing, ever.  I could even almost see if this was one of those times the nurse wasn’t there, she was high, no one to give her insulin. Sure that would make sense.

But.

The nurse was there, in fact, gave her a .5 unit to cover the high..

(To anyone who doesn’t know anything about type-1 and is reading this going, “Well why would you give a diabetic a cupcake anyways?”  As long as she’s getting insulin for it, it’s ok. Which goes for any other food for that matter. )

Not to mention, my child is 6.

In that moment, of watching her classmates, her friends enjoy a nice sweet, tasty cupcake. While she munched on salty, nearly flavorless crackers… Try explaining to a child that; We don’t want you to feel outcasted, even though our actions are exactly that. If it doesn’t make sense to me, and I’m nearly 30. It sure as Hell isn’t going to make sense to a 6 year old little girl, who already knows that’s she’s different from everyone else.

This happened 2 days before our alleged 504 meeting. It was the straw that broke the camels back and pretty much forced our hand into doing the news story, with WCHS.

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Diabetic Child’s Illness Gets Mother A Visit From Truancy Officer and Child Protective Services

WCHS-EWN

 

 

 

Diabetic Child’s Illness Gets Mother Visit From Truancy Officer, and CPS

 

 

Our Story.

I’m exhausted.  We are battling a school, a truancy officer, the school board, and even CPS to the point that I want nothing more then to just throw my hands in the air and say

“F@*# it!  WE quit!

YOU WIN!

WE ARE HOME SCHOOLING!”

Since the beginning of the school year, we have been fighting tooth and nail to get a 504 plan initiated for my daughter SB.

Yesterday, and only 10 days until the end of school she was officially denied.  On the grounds that they do not believe Type-1 Diabetes is considered a Chronic Illness.

I’m sorry, I’m just not sure how you can get more chronic then that… A disease that is lifelong, and that has to be monitored constantly. Call me crazy, but isn’t that the almost the exact definition of the word chronic?

Don’t get me wrong!

It’s not that I don’t like my daughter’s teacher’s.

As far as being competent educators, they most certainly are that, and  then some… but, as far as making sure my kid stays under or above dangerous blood glucose levels… It would be gracious to say the level of care is below par.  Sometimes, only being checked once a day.

There is NO full time nurse, the one they have has to divide her time between 4 different schools through out the day.  Which isn’t fair to anyone, especially the nurse.                                                Apart from that, I mean, it may just be me, but something tells me that’s dangerous to every other child like SB. (2).

( Not to break subject, but since we’re on the topic of her nurse… I LOVE when she gives us advice on How to Control my daughter’s diabetes. I don’t mean to sound like an arrogant jackass but, seriously? I appreciate the fact that you went to school for a couple of years and you learned a thing or two about a thing or two, but unless you have personally dealt with this disease, there isn’t anything you learned throughout your whole educational experience that I didn’t within my first day after being thrown into the wonderful world of Type-1 Diabetes.

Tell you what… She gets some weird crazy looking rash, I’ll come to you.)

The more we talk to other T1 families a strong trend is becoming more and more apparent. It seems to me that parents of children with disabilities are bullied into either changing school districts or home schooling.

My point is this…

If I don’t feel that its medically in her best interest to go to school a certain day. To be cared for by an underpaid teacher’s assistant. Who hates her life some days and slacks on monitoring SB’s BG;  I , as her parent, reserve that right to keep my daughter safe.

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Letting Go of that Crutch.

So it’s been a week since my last cigarette.

I gotta say, I feel really good all things considered. Started working out again which does a lot to help keep my mind off of it, writing also helps. Yea, writing has been the biggest release by far of the tension that builds up from craving nicotine. Such a horrible sensation.

But I have goals, my first was making it a week, which I hit today. So I feel extra good about myself. Normally I would have given up by now, as proven by the thousands upon thousands of prior attempts. It got so bad at one point, I was literally trying to quit everyday for almost 2 weeks. This time, I just refuse to let myself make excuses. Not to mention, lots of slow, deep breaths.  I have to much that I want to do that is impossible if I remain a smoker, so I’ve set my mind to it.

For those who have never smoked, please don’t offer people in agony advice about quitting smoking. That’s like punching a Grizzly Bear in the face and daring him to eat you. It will never end well for you.  Especially for those of us who have been smoker’s longer then we haven’t. You don’t have to say anything, really it’s ok. we’re not looking for pat’s on the back or a medal. We just want to get through this as quickly and painlessly as possible. A general nod will suffice.

Let me give you an outline of what the first few days are like.

The first day isn’t too bad, especially if you go into it head strong. You feel amped, you kinda use those withdrawal symptoms to say “yea I can do this!”.

By the 2nd Day, you’re ready to die.

You get a headache that can only be cured by some magical force. You feel foggy, your body aches. Sound is more intense, so people talking make you want to choke them. Every nerve in your body feels like it is firing at once, screaming for that relaxing sensation the smoke entering your lungs induces.

3rd Day, is the make it or break it day, and for me was the hardest.

You wake up feeling like you dreamed you were a wrecking ball. ( I drank two 12 oz bottles of Açai Juice and it seemed to lessen that a little.) You begin to notice that the craving’s subside a little, but when they hit, they hit fast, stealthy and with a vengeance. By the afternoon if you haven’t broke by now, the nicotine receptors in your brain will begin to try to start their panic mode, last ditch efforts to persuade you to give up this feeble quest. “just one, just take that tense, clinched up feeling away and then you ditch the pack, seriously.. it’s cool man.”

It’s hard to explain the physical and metal torment to someone who has never craved that long, slow, hot draw of smoke. The good burn as it fills your lungs, seemingly relaxing your entire body at the same time. This feeling will never go away. I will always crave cigarettes. It just gets easier to say no, but we all get tested from time to time, some more then others.  To me, anyone who can successfully put down cigarettes for good has my respect. It’s most certainly the hardest thing I’ve ever done.

I know if I can do this.. I can do anything I put my mind to, (within reason of course!)

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Hold This…

 

Sometimes there are people who just don’t know how to be quiet, sometimes there are people who just rub you the wrong way.  Sometimes, there are people who rub you the wrong way because they just don’t know how to be quiet.

My wife and I were out with my youngest eating lunch at Panera Bread this afternoon, and just so happened to pick the best seats in the whole place. And by that, I mean I wanted to kill myself. What started off as a pretty decent meal, quickly turned into what could best be described as a desperate cry for help from this very obnoxious family to our left. ..

The first remark I heard that just so happened grab my attention was the less then sincere “you’re the best mom in the world!” normally I’d say aww sweet, whatever, but the way she said it sounded as though she was reading it from a note card. Almost like it was a secret message “Please Help my mom beats me”. This is when I knew the mom was a real winner, without skipping a beat and this almost Borat looking smile on her face snaps her head towards the daughter and says “I know”.Borat

I couldn’t help but chuckle, rubbed my hands across my face and said “heh, this is going to be good.” My wife had finally sat down by then, and could tell right away by the look on my face I had something smartass floating around in my head. I told her “just wait, you’ll see.”  Certain our neighbors would not soon disappoint. No longer then the thought crossed my mind did they prove me right. “Get me a glass of water” “Now Get me A Glass of Ice” “Hold this” now “Hold that” It got to the point I had to catch myself from looking at her and having one of my bi-polar freak out moments “GET IT YOURSELF! YOU LAZY GOOD FOR NOTHING..” but I took a really deep breathe, looked at my daughter and thought better of it. It reminded me of my wife’s mother. She is the exact same way, constantly having other people tend to her every whim as if she were Roman nobility. The greatest phrase was when she got up to leave. She looks at her more attractive daughter and goes “Now, lets go play around in this Mall for a while..” then glances back to the less attractive one and says, “..Get my Cookies.

I lost it.

That was the funniest freaking thing I had heard all day. I nearly shot tea out of my nose. E and I just stared at each other in amazement. Had we really just witnessed that or was this some weird B version of “What Would You Do?”   JOHN QUINONES

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