Tag Archives: kids with diabetes

May 19 2013
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It Ain't Always Pretty...But It's My Life

Easy Like Sunday Morning

Today’s topic:  Spread the Love

“As another Diabetes Blog Week draws to a close, let’s reflect on some of the great bloggers we’ve found this week. Give some love to three blog posts you’ve read and loved during Diabetes Blog Week, and tell us why they’re worth reading. Or share three blogs you’ve found this week that are new to you.”

This one is as easy as Sunday morning.

I haven’t had time to read any other blogs yet. I know that is the point of this whole thing, but I was scrambling to post my stuff before midnight every night! Between long days at my full-time job this week and end of the school year activities and baseball, soccer and football I barely had time to breathe.

Baseball got rained out today so I think I’ve got a date with my computer and the amazing blog posts of Diabetes Blog Week 2013!

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May 18 2013
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It Ain't Always Pretty...But It's My Life

The Mind is a Terrible Thing to Waste

Today’s topic: Diabetes Art

“This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play”.

I used to be a really creative person. But then I had 3 children, a full-time job and a child diagnosed with type I diabetes.

Now my brain looks like this:

Mush

Or, maybe more like this:

brain mush

The old me would have been doing stuff like this:

Resevoir earrings

Or this:

plunger earrings

But I just don’t have it in me anymore.

Creativity…

Just another thing stupid diabetes has taken from me.

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May 17 2013
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It Ain't Always Pretty...But It's My Life

I’m Married to David Beckham

Today’s topic:  Freaky Friday

“Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?”

So here’s the deal y’all. This topic is not my favorite. It’s not one that I was just itching to write. But here’s how I look at it. I had to dig deeper to find an answer. I had to be more creative. The topics that aren’t my favorites sometimes end up eliciting some of my favorite responses. So I am up for the challenge.

After much thought, the answer actually seemed pretty simple to me.

The answer simply is…..none.

There are no other chronic disease that I would choose to deal with instead of diabetes. And there are two reasons for that.

Number one, I am a realist. I don’t tend to expend a whole lot of energy wishing, hoping and day dreaming in fantasy land. I’ve never been any good at it. I don’t play the lottery, I don’t pretend to be married to David Beckham and I don’t dream about having a second home on my own private island where the floor of the house is see-through to the ocean below and my bedroom doesn’t have walls and is open to the gentle trade winds (ok, maybe I have thought about that one…). To me, that is a waste of time. It’s not fun to wish for something that will most likely never happen. It’s disappointing and then I just get pissed off. This doesn’t mean that I am hopeless and have no dreams. I just keep my hopes and dreams realistic. And since there is no way that we can actually switch diseases, I don’t even bother thinking about it.

And the other reason is this: like it or not, THIS is our journey. THIS is the hand we were dealt. Period. I believe that everything happens for a reason. I am not a religious fanatic, but I believe in God and I believe that He chose this path for us. I can wonder and question why, but it is futile. It’s kind of like the fantasizing. It’s a waste of time. Who am I to question Him? This is the definition of faith. And frankly, I don’t have the time or energy for anything else, so I’m going with faith.

So instead of wishing we could ‘Freaky Friday’ with another disease, I am just focusing on doing the best I can with the one we’ve already got.

As for the second part of today’s prompt, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?

Absofreakinglutely!

I have known my husband and his tId sister for over 20 years now, and until Medium was diagnosed, I didn’t have a CLUE what she had been dealing with since she was 4 years old. She made it look easy and like it was not that big of a deal. That is because she is AWESOME and diabetes is just a part of her life and not her identity. Although it’s a pretty big part of her life, she is the editor of the ADA’s publication Diabetes Forecast Magazine. Go check out her work here! I feel like I owe her an apology for not realizing how different her life was from everybody else’s and for not understanding how serious this disease really is.

And since I have been so public with my journey, I have had friends come out of the woodwork and share their own stories of struggles with other diseases or health issues that I didn’t even know they were facing. It has been a great lesson in not judging a person until you walk a mile in their shoes.

Or better yet, not judging a person at all!

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May 16 2013
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It Ain't Always Pretty...But It's My Life

I Am Pancreas, Hear Me Roar!

Today’s topic:  Accomplishments Big and Small

“We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you’ve made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small – think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.).”

Some days I feel like I’ve come so far, and other days I feel like a total neophyte when it comes to diabetes. And from what I do know about diabetes, I will most likely always feel bipolar about my pancreatic performance.

But the one thing that I am pretty proud of as I look back, is how quickly I embraced my new role as not only pancreas, but as educator. I spent the first several weeks in the DDPOD (deep, dark pit of despair), but once I came out of that, the pendulum swung the other way. I went from being paralyzed by the fear of the unknown to sponging up every morsel I could about the science of diabetes. I went from not being able to complete a sentence about Medium without crying, to telling anyone who would listen what was happening to his body. I started this blog and the Wife Mom Pancreas brand. I have a Facebook page and Twitter account, albeit I haven’t really gotten into promoting them yet. Around the same time I started my blog, I started writing articles for Diabetes Daily. I have always loved writing and I finally felt like I had something important to write about. Unfortunately life outside of the vacuum of diabetes has taken over and I haven’t written anything for Diabetes Daily in a while.

Social media is such an amazing way to connect people from all walks of life and all corners of the globe. In the months to come, I hope to do a better job of using it to get the word out about life with the big D!

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May 15 2013
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It Ain't Always Pretty...But It's My Life

Like the Corners of My Mind

Today’s topic:  Memories

“Today we’re going to share our most memorable diabetes day. You can take this anywhere…. your or your loved one’s diagnosis, a bad low, a bad high, a big success, any day that you’d like to share.”

It would be easy to say that my most memorable diabetes day would be the day that Medium was diagnosed. And while I can actually remember every detail about that day; what Medium was wearing, the look on his pediatrician’s face when his urine dip showed glucose and large ketones, and how anxious I felt sitting in the waiting room of Children’s Mercy Hospital ER knowing that Medium had diabetes but not really knowing what that meant and what would happen next, that isn’t my most memorable diabetes day.

There is another day that is etched in the most permanent part of my mind, a day that I try not to think about too often because when I do, it catapults me to the edge of the DDPOD (deep, dark pit of despair) and that is a place I don’t want to go back to. It was about 10 days post-diagnosis. Long enough for reality and exhaustion to set in. I had been “researching on the internet” (code words for reading a bunch of shit that I shouldn’t have 10 days post-diagnosis). I found other people’s blogs and starting reading about things that I hadn’t even thought to worry about. One new worry  after the next piling on top of the worry I already had combined with very, very few hours of sleep in ten days and I was one hot mess. One evening, after dinner, we couldn’t get Medium’s blood sugar much above 70 despite repeated snacks so we took him to the ER. And long story short, I basically refused to take him home and so they admitted him. I was so scared and so tired and so emotional that I just wanted to give him to someone safe to take care of him because I just didn’t have one more ounce in me that could do it.

That day and that feeling will haunt me the rest of my life.

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May 14 2013
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It Ain't Always Pretty...But It's My Life

Diabetes Is Not Diabetes Is Not Diabetes

Today’s topic:  We, The Undersigned

“Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change??

We, the undersigned People with Diabetes (PWDs) and caregivers and loved ones of PWDs (Type 3s) do herby petition, anyone who will freaking listen, for:

Separate names for separate diseases….diabetes is not diabetes is not diabetes. Type I and Type II are similar, they are in the same family if you will. But just like two siblings in the same family can have very different personalities, so too can the different types of diabetes. And what about LADA (also called type 1.5)? Ha, you probably didn’t even know that there was a type 1.5! There is, but you’ll have to read about it here because I’m too tired to explain it right now.

Speaking of tired. I’m so tired of explaining to people the differences between Medium’s type of diabetes and other types of diabetes. The conversation usually goes something like this:

Me: Do you have the box that those cookies came in?

Uneducated idiot: Huh? Why?

Me: Oh, I just need to check the carbs for Medium.

Uneducated idiot: Why, is he on a diet or something?

Me: No, he has type I diabetes and he needs to dose insulin to cover any carbs he eats.

Uneducated idiot: Oh! Is that the bad kind?

Me: They are all bad.

Uneducated idiot: My step-mom’s uncle’s cousin had that, she died.

Me: Oh, I’m sorry to hear that (and gee thanks for sharing that bit of uplifting news with me! That is oh so comforting, dumbass!)

Uneducated idiot: Yeah, she couldn’t eat sugar or anything and she went blind!

Me: Yes, there are a lot of serious complications with diabetes.

Uneducated idiot: Does Medium eat a lot of sugar? Well, I guess not now, cuz he can’t have it anymore.

Me: Actually, yes he can have sugar, he just has to dose for it. And type I diabetes has nothing to do with eating sugar. It is an autoimmune disease where his body attacked his pancreas and……you know what. I’ll just SWAG (scientific wild-ass guess) the carbs in the cookie.

Uneducated idiot: SWAG???

Please, for the sanity of D-moms and D-dads everywhere, PLEASE give these separate diseases, separate names…..and since I’m asking for things, I’d like a public service announcement with a simple explanation of the different types as well.

Signed,

Tired, frustrated and misunderstood PWDs and Type 3s

 

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May 13 2013
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It Ain't Always Pretty...But It's My Life

The Longest Sentence In The History Of The World (or at least the D-world)

So there is this awesome thing out in the universe called Diabetes Blog Week. I was waywardly meandering around the internet last year about this time, usually a very dangerous thing, but this time it was pure goodness. I happened upon a diabetes blog that mentioned the upcoming event where D-bloggers from around the world all write about the same topic each day of the week and then they are all posted in one place for everyone to share their thoughts and feelings. If you are a type 3 (often times those who do not have diabetes themselves, but care for someone who does, call themselves type 3’s), you know how lonely this disease can be. The diabetes online community, lovingly referred to as the DOC, is an absolute LIFEBLOOD to many type 3’s. When no one, not your mom, your sister or your best friend, can relate to how worried you are about the correction bolus you just gave your child at bedtime because he was 285, but then you remembered that he played in 2 baseball games, a soccer game and a football game that day, and now you are wishing you could suck some of that insulin back out of him like you can suck venom from a snake bite because he’s now fast asleep and rightfully exhausted from his day so you don’t want to wake him, so instead you set your alarm to check him in 3 hours, and then wonder why you even set your alarm because you have just laid there and worried for the whole 3 hours, and then you check him and he is a perfect 123 with no IOB (insulin on board) so you get back in bed hoping to catch a few winks before you have to get up, but then you can’t fall asleep because you are praying to God and thanking Him that he was alright and then you start thinking about the other possible outcomes that could have been which leads you to think about how much you hate diabetes which makes you wonder for the bazillionth time why no one has found a cure for this dreaded disease yet which makes you so sad and angry that you can’t sleep, and then, hey, guess what, it’s time to get up,  yeah, when no one can relate to THAT, you get on your iPad and seek out your friends in the DOC who are also awake, fighting the same battles and you commiserate. (I am also submitting this blog post to the Guinness Book of World’s Records for longest sentence EVER!) And even though they aren’t there to do the work for you, or directly help you, just knowing that others KNOW, I mean REALLY know, what you are going through makes you feel less sorry for yourself and less lonely.

At this point I have already written 474 words and I haven’t even gotten to today’s topic! Oh how I love my First Amendment right!

Anywhoooo…..

Today’s topic:  Share and Don’t Share

“Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?”

Medium was only diagnosed 15 months ago so we have only seen his endocrinology team about 5 times. And I have to say, they pretty much rock. But I wish they could really see how tough Medium is and how he is not letting this disease slow him down for even a second. I wish they could really know how great his attitude is about his diabetes and I wish they would make a big, no, a HUGE deal about it! I wish they would know this and then invite him to stand up and speak to an auditorium full of people who have lost hope. He would NEVER in a million years do this, but it would be nice to be asked! I wish they would make it a point to really recognized him for how well he handles things. Because as much as I can tell him, I’m still just his mom and kids always think their mom’s are blowing smoke and just say nice things that they don’t really mean. It would go a long way to boost his confidence if someone else recognized his struggles and acknowledged his hard work. (I also wish they could magically get him to eat vegetables, but that’s another thing all together!)

And I hope they DON’T see that we change his set out every 3-4 days instead of every 2-3 and that I can’t remember the last time we changed the lancet in his poker! I also hope they don’t see that he eats pizza 3-5 times a week, but they see his A1C and that is telling enough!

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Apr 18 2013
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It Ain't Always Pretty...But It's My Life

Throwing Punches

So we’ve made it through our first major illness with diabetes. Medium is just getting over the fever, sore throat, cough crap. But boy did it do a number on his numbers.

It is hard enough to take care of a sick kid who is fighting a virus where there is really nothing you can do but treat his symptoms, but then throw in uncontrollable high blood sugars and, well, it takes its toll…on everyone.

After being the sole on-duty night nurse for two nights, complete with vitals checked, meds passed, ketones checked and correction boluses given, I was looking forward to handing my nurse hat off to my other half for the night shift on day 3. Moments after I snuggled in to my freshly washed sheets and fell asleep, the MySentry alarm went off. “Unable to find pump”. The MySentry is on my husband’s side of the bed. So he “snoozed” the alarm. And then snoozed it again…..and again…..and again. Seriously! I’m trying to get some sleep over here! You can “snooze” the alarm on the MySentry as many times as you want, but until you get off your ass and go in and clear the alarm on the actual pump, it’s going to keep going off.

So, I’m not sure how many times my dear husband was going to let it go off, but after about 5 times I couldn’t take it anymore and I got up and went in to Medium’s room and cleared it myself. I was so exhausted and therefore, so mad at my dear husband at that moment. Have you ever heard of or read the blog People I Want to Punch in the Throat? If not, you should. It’s pretty entertaining. But these are the words that were running through my head as my husband was snoring next to me while I was fuming and trying to fall back to sleep.

It was a stressful week for us all. My husband and I had to take turns taking days off from work to stay home with Medium. Nothing we did to lower his blood sugars worked. And on top of it all, Medium was miserable. And watching your baby suffer and not being able to do anything about it is such a helpless feeling.

I’m happy to report that Medium is feeling better every day and things are getting back to normal around our house.

And I don’t want to punch my husband in the throat anymore…..at least not for now.

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Feb 28 2013
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It Ain't Always Pretty...But It's My Life

Five Seconds

five red button

5…4…3…2…1

Five seconds. Seems like an unbelievably short amount time. Especially considering how much runs through my mind in that amount of time every night when I check Medium’s blood sugar.

From the moment that strip sucks up the perfectly formed drop of blood, to the beep that signifies the moment of truth, a lifetime of thoughts rush through my head.

It is possible to have really good control of your blood sugar as a diabetic and rarely be surprised by the number. But the truth is with Medium, his numbers are all over the place most of the time. I attribute this to his being fairly newly diagnosed, him being 11 and pre-pubescent and the fact that it is not my body, so I don’t know how he is feeling. But what number that glucometer displays is always a surprise to me.

I don’t like surprises.

I am a planner.

A self-proclaimed cotrol-freak, and I don’t like that every night for 5 seconds I hold my breath and pray that the surprise is a good one.

In that 5 seconds, I worry that it is too high. I worry that it will be too low. Somehow in 5 seconds I am able to concurrently think about giving a correction bolus and then setting my alarm to ensure that it brought his number down. In that five seconds I decide between juice and a Quick Stick if he is low. I choose peanut butter crackers and a temporary basal rate if he is only slightly low. And I choose just a 1 hour temporary basal rate if he is just slightly higher or lower than I want. In that five seconds I worry that if he is really high, is it because he is coming down with something or because he forgot to bolus for his bedtime snack? I can already picture myself systematically choosing the correct order of the buttons on his pump to deliver a correction versus setting a temporary basal rate. In 5 seconds I am able to wonder why he is low, feel sorry for myself that this will be another one of the many nights that I won’t sleep, and picture myself hysterical if I were to find him cold and dead in his bed in the morning from this low.

Seems impossible to think all of these things in five seconds.

But I do.

Because in that 5 seconds every night, the world stands still as I hold my breath and my son’s life hangs in the balance.

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Feb 17 2013
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It Ain't Always Pretty...But It's My Life

Diabetes Isn’t Funny…And Neither Is This Blog

I have been struggling to write lately. I had been blaming it on our busy fall schedule, having the house on the market, the move, the holidays…..

But it seems that those were just excuses.

I think I have identified the problem.

Diabetes isn’t funny.

I am a funny person (people tell me this anyway). And I do know, and fully admit, that I always use humor to diffuse unpleasant situations. So I love to write funny shit. And I was blessed with a personality and perspective to always find the funny shit.

But diabetes isn’t funny.

And this blog is about diabetes and my thoughts, feelings and experiences with having a child diagnosed with diabetes. And I passionately want to educate people about this disease and I want to be a source of information for new families facing this awful diagnosis.

But again, I have to say it. Diabetes isn’t funny.

I mean, it’s not even remotely funny.

There is nothing funny about blood sugars in the 500’s with moderate ketones.

And I assure you that a blood sugar of 31 is not going to get a chuckle from me.

I promise you that worrying about whether my son will loose his eyesight or keep his limbs, is not the least bit whimsical.

Hoping and praying that my son will someday find someone who will love him and be willing to take on the beast that is this disease does not crack me up.

So, all I am left to write about is the sad, scary, lonely, depressing feelings I have about diabetes.

And that sucks.

It bums me out.

I have already written posts about how type 1 has nothing to do with sugar, and that it really is about a confused immune system and bad luck. I have written many times about how tired I am now that I have to set alarms and check blood sugars all night long and how that contributes to anxiety and feelings of depression.

I have written about the “Honeymoon” period and even about diabetes and ADHD.

Sure I have peppered in a few non-diabetes related posts about ants, laundry, computers and make-up (this one is hilarious-if I do say so myself! And totally true!)

I’ve even written more than one post about not having anything to write about!

But this blog is supposed to be a source for others going through the same thing to find valuable information about timely, targeted diabetes information!

Right?

Ok, so I’ve made a decision.

This is my blog and I can do whatever I want. I didn’t sign any contract to ONLY provide diabetes related posts!

And the fact is, that while others that are going through the same thing as me DO need diabetes information, they are still regular people who need to laugh and get AWAY from diabetes sometimes.

Sometimes you need to read about how someone else’s 5 year-old had a MASSIVE code brown in the MEN’S room at a high school during your other son’s basketball tournament and how you had to have your oldest son stand guard outside and not let any men in and how in the end you had to abort the underwear  AND shorts AND shoes and usher the 5 year-old out the side door before you either got chastised by the janitor or arrested for having a half-naked 5 year-old in a public place. (Yeah, pretty sure we are not welcome at Shawnee Mission West High School anymore).

So, my friends, as I am entering the second year of my blog, I am taking it a new direction. If I’m ever going to write again. I’m going to have to start including some non D material.

After all, the name of the blog is WifeMomPancreas, because I am not just a pancreas!

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