Tag Archives: diabetes

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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Jan 24 2013
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It Ain't Always Pretty...But It's My Life

Diaversary

il_570xN.214513506

Diaversary. Weird word.

What does it even mean?

I’m not 100% sure, but I think it means, “diabetes anniversary”. But, it could mean “diagnosis anniversary”.

Either way, it sucks.

It is not something I’m happy about.

I don’t even want to acknowledge it, let alone celebrate it.

I suppose it’s all about the way you look at things. Glass half full versus glass half empty kind of thing.

I know I am supposed to be positive and I usually do try to find the silver lining in every situation. I am always impressed, amazed, and flabbergasted when I read blogs, articles and Facebook posts from people who are going through significant struggles and they are so positive.

But I just can’t be that person today.

There is nothing good about my son being diagnosed with this awful disease a year ago. Nothing.

For 365 days now, his life has literally been threatened.

Veterans of this disease probably don’t think of it that way. Or they don’t focus on it that way. But I am still a newbie, and right now I feel like I will never be able to focus on anything else.

Every day is affected by diabetes.

Even if Medium is having a good day and his numbers are good, I inevitably read on Facebook about someone else’s struggle with their own or their child’s sugars that day. Or I read in the news that someone has died as a result of their diabetes.

I know it is all about perspective.

Because every day there are also millions of people living successful, happy, meaningful lives, despite their diabetes. Every day there are people posting good numbers or successful sleepovers or trips to the movies. Every day people with diabetes are getting married, having healthy babies, graduating from college, playing professional sports. The point is, they are living with diabetes. And so maybe I will be able to see things differently one day, too.

But today is not that day.

Today marks an event that happened a year ago, that changed my life forever; re-defined the word “mother” for me. But more importantly, my son’s life has forever been changed. He is forced to head down a path that I didn’t choose for him. It is a path that no one would choose. God chose this path for him, and maybe someday I will understand why. But right now, I disagree with God. Right now, God and I are going to agree to disagree on this one.

My oldest son, Large, has started talking about driving. He will turn 14 this year and in Kansas, where we live, kids get their driving permits when they are 14, so it is on his mind.

While I was driving home from work last night and driving by the hospital where Medium’s endocrinologist is, a thought smacked me across the face.

Medium will be 14 one day, too. He will want to get his driver’s permit. He will turn 16 and want to drive someday.

This is one of, I’m sure, many situations that I had not yet thought about. The questions started flooding my brain. Will I let him drive? Will I make him check his blood sugar before he starts up the engine every time? Will I ever let him drive alone? How have other D-moms and dad handled this situation?

It just sucks so much for him. I know that is a pretty immature and simplistic way to put it, but it does. It sucks rocks. Big ones.

Not only does he have to have this horrid disease which has robbed him of his innocent and carefree childhood. But it makes him feel like crap sometimes, he has to stab himself with needles 10 times a day (which if you’re counting and can do simple math is 3,650 finger stabbings since diagnosis a year ago), play dates and sleepovers at other people’s houses are almost non-existent, he has to be tethered to a device 24-7 FOR THE REST OF HIS LIFE, and he can never just live in the moment. He has to be one step ahead of the game at all times. He has to check his sugar, make sure he has food to treat a low, make sure he has his meter and extra test strips every time he leaves the house. He is singled out at school as a kid with a medical condition.

That is no way for a child to live.

It is so not fair.

And besides how worried I am all the time about his long term health and whether or not the life-saving insulin we give him is going to kill him overnight while we are all sleeping, I am so, so sad for him and this life he is forced to lead.

I know he will have as a great a life as possible, because I will see to it. But the reality is that he has type 1 diabetes.

And that sucks.

And so today, on Medium’s first diaverary, I will not celebrate.

Maybe next January 24th I will feel differently.

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

Hell Hath No Fury

I’ve had a house guest for almost a year now. He was not invited, and he won’t leave. I’ve been really busy for the last few months so we’ve been able to stay out of each other’s way, for the most part.

But Medium’s numbers have been totally whack lately and it’s all his fault. The uninvited guest, that is.

The other night when we checked at bedtime he was 467……WTH? 467??? Just two hours earlier he was in the 100’s. So of course I rage bolused on him and then checked  him 2 hours later and he was 187. Then I decided to check him again at 3:00 a.m. because I got up to pee.

My bleary eyes watched the countdown on the meter 5, 4, 3, 2, 1…..54.

Blink. Blink.

54.

Get the hell out of my house. I’m so over you, you don’t even know it.

It’s easy to push him to the back of my mind when I am extremely busy. It is easy for me to not get down about him when I don’t have time to think about him.

But things have finally slowed down a little bit in my life and now he is all up in my grill again.

And as much as I want to stick my head in the sand and ignore him, I can’t.

Because my son’s life depends on me paying attention to the rude, ugly, smelly, obtrusive and down-right abusive guest.

So here I sit. Vigilantly watching the stupid SOB.

He’d better sleep with one eye open.

Hell hath no fury like a woman whose child’s life has been threatened.

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

A Mother’s Wish

sunrise tree***So….it has been so long since I have blogged that I just found this post that I wrote back at the beginning of December and, for reasons that I cannot remember, I did not post. So this should have been posted on December 2nd….better late than never??? Anyway….

Tonight I met the mom of a boy that is in the cast of Nuncrackers with Large. We’ve know of this boy for a while because he is active in the Kansas City theater community, but this is the first time he and Large have done a show together. Several of us parents were lamenting at how busy life is especially with these theater kids and rehearsals and how most of us live so far away from downtown and the areas where most of the theaters are.  All of us in the conversation were working moms. One of the mom’s has recently gone back to full time work and I was commiserating with her as less than 2 years ago I went from part time to full time too. I mentioned how that was already hard and then Medium was diagnosed with t1d this year and how much I hate being so far away from him every day. So the mom of this other boy sits up and says that her oldest has type 1 and has had it for 14 years. Who knew?  She was asking how we were doing and commented how the first year was the hardest.

I sort of unleashed on her and told her about the downward spiral I took into the deep, dark pit of despair (the DDPOD) right after diagnosis. I told her that what sent me into that pit was reading things, mostly blogs on the internet, and being smacked in the face with the reality of what our life was going to be like and all of the things that I hadn’t yet worried about but now knew to worry about. I told her how I started a blog to deal with my emotions. She told me that she wrote and recorded a song with her son about how she felt. And as she was telling me this it was sounding really familiar. Turns out, we got her CD in the hospital with a bunch of other stuff; poems, books, websites, etc. And her song was one of the things that I just could not listen to in those early days. The words were written inside the CD and I started to read them, but couldn’t even finish. I didn’t want to learn any more things that I needed to worry about. I already knew that I was praying for a cure, but I wasn’t ready to really know what that meant. Because what it meant was that every day for the rest of my life I would hope and pray for a cure so that my son could live a long, happy life with legs that would take him where he wanted to go. So that he could see the world with strong eyes, and have a strong heart to find the right girl. (Words from Renee Austin’s song, “A Mother’s Wish”.)

So I came home tonight and I went somewhere I hadn’t been in a long time. I opened the drawer that held all of those poems, and books and her CD. And I got it out and I listened to it for the first time. And I cried just as hard today as I probably would have if I had listened to it back then.

Because it is true. It is the ugliest truth there is; that your child’s health and happiness are threatened every day.

But I have a different perspective now than I had ten months ago and I wasn’t crying from that same terrified place. I’m not going back into the DDPOD. That was a place where there was no hope.

I am still scared. I am still sad. I still worry every day about my son’s future.

But I have hope now.  Ten months ago I had no hope.

We are doing this. It is hard, and scary and awful sometimes. But we are doing it.

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Nov 24 2012
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It Ain't Always Pretty...But It's My Life

10 Reason’s I am Thankful My Son Has Diabetes

My article for Diabetes Daily website on Thanksgiving:

http://www.diabetesdaily.com/voices/2012/11/10-reasons-im-thankful-my-son-has-diabetes/

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Oct 19 2012
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It Ain't Always Pretty...But It's My Life

How To Have A Successful Sleepover For Your D-Kid

My article for Diabetes Daily this week! Enjoy!

 

http://www.diabetesdaily.com/voices/2012/10/sleepovers-for-a-child-with-diabetes/

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Oct 12 2012
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It Ain't Always Pretty...But It's My Life

It’s All Meri’s Fault (ok….not really)

I must stop reading Meri Schuhmacher’s blog, Our Diabetic Life.

Every time I read it, it takes me further away from my own computer.

I read her posts and she is able to nail down my thoughts with her words so well, I think, why do I need to write? She has already written it. And she has written it better than I could. I suppose 14 years of experience as a D-mom has given her ample opportunities to parlay her thoughts into eloquent words, but damn, she is good.

So why bother?

Here’s why.

Because we each have our own story. And as much as it may seem similar to someone else’s, it is uniquely our own.

We just might have an idea or a perspective on something that is just different enough to make a difference to someone.

And I really can’t blame this all on Meri. Part of why I am not writing, it that I am stressed. Way, way stressed.

We have been trying to sell our house for 2 months now. I have watched houses all around mine sell. We have put lots of time and money into updates based on Realtor feedback. We have dropped the price, twice. I have to have the house in pristine condition every morning when I leave for work in case we get a request for a showing during the day. And keeping a house in immaculate condition with 3 busy boys and 2 full-time working parents is about to kill me. And to top it off, we are about to loose the lot we hand-picked to build on. So we REALLY need to sell our house.

And then there is work. Ah work. I will be traveling to Wisconsin for the better part of the last 2 weeks of October to learn how to build, implement and support an entirely new electronic medical record for the very large health system that I work for. I will go back again in November as well. Then I will spend the next 18 months or so working on that. I am not complaining. I am thrilled to have a stable job, and am actually really excited to learn all of this from the ground up. But being away from home and my kids so much is going to be very hard for me and a logistical nightmare. Please pray for my husband.

And then there’s my health. I found out this week that food sits in my stomach for 8 hours before moving on, which is the cause of my feeling like crap all the time. I don’t really know what it all means, I go back to the doctor next week to discuss next steps. And while I am thrilled to have some answers, this on-going pain and nausea really gets in the way of me being happy and productive.

And then there is Medium’s behavior and my inability to manage it. Can I make a confession? Of course I can, this is my blog. I’m ready to give up on him. I’m ready to just wash my hands of him and be done. I love him. I love him more than I can express, which is why I want so badly to “fix” him. But I can’t. I am out of ideas. There are no more tricks up my sleeve. I am waving the white flag. My love for him isn’t enough.

And let’s not forget about diabetes and all it’s baggage. Medium’s been doing great–diabetes wise–, but it takes a lot to manage it and keep him doing great. And diabetes can’t be put on the back burner just because we have a lot of other things going on.

So it’s not really Meri’s fault that I’m not writing. I just don’t have time. With all of this other crap going on, something’s gotta give, and right now it is my writing.

Next is my sanity.

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