Tag Archives: health

Status Quo

Six months. It has been six months since Medium was diagnosed with type I diabetes. (Well actually, it’s been almost 7 months now).

But six months is apparently the magic number for me. I am finally at the point where I don’t think about Medium’s diabetes minute to minute or hour to hour. After six months I guess I realize that we do know what we’re doing and, to some degree anyway, we can predict what his body is going to do.  I haven’t been blogging much lately. Mostly because I’m busy, but it turns out I just don’t have very much to say lately, at least as far as diabetes goes.

Things here at home have been pretty status quo.

Medium’s numbers have been okay, more on the high side, but we have things under control. We had his three-month endocrine appointment the other day and they agreed that he is coming out of his honeymoon phase. We made some adjustments and I think things are going to be fine.

He started school this week too. His teacher seems nice, although she seems a little nervous about the diabetes. But I think she’s going to be great and I think she will pay really close attention and make sure that Medium is okay while he’s in class.

And of course our school nurse is there and she is awesome and everything is running smoothly.

My brother and his family just moved here from Ohio and they have three boys around the same ages as my boys, so Medium is loving getting to spend so much time with his cousins.

My husband and I have even stopped getting up at 3 AM to check his blood sugar. We do a midnight check and if one of us wakes up in the middle of the night to go to the bathroom or something we will check him but we are no longer setting our alarm for 3 AM.

Right now things are just… Normal.

It’s weird.

We have our house on the market right now so it’s clean, it’s picked up, its immaculate and that has relieved so much stress for me.

So right now, at this very moment in time, my emotions are in check. I’m not feeling overwhelmed with thoughts that I need to get out in blog posts.

The house is clean, the kids are back in school, and diabetes, for right now anyway, is behaving itself.

I don’t know how long this will last, but I’ll take it!

I’m sure there is some kind of drama lurking around the corner, and I will be able to fill pages and pages of blog posts. But for now I am signing off.

Until the next catastrophe…

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I Have No Idea What I Am Doing

Wow, it has been so long since I blogged that I had to go back and read some of my own posts to reacquaint myself with my blog!

And boy was I angry a month ago. Wow. I promise to not do THAT again! Well, I guess I can’t promise that, but I will try. 🙂

So, so much has happened in the last 6 weeks. I have just been super busy. My oldest and my youngest and I were all in a production of The Wizard of Oz last weekend. It was so much fun, but man was that exhausting! For three weeks straight I went straight from work to rehearsal.  Fourteen hour days for three weeks almost killed me! Thank God Medium went to diabetes camp during that time and I actually got five nights of uninterrupted sleep! I was so worried about him and what his numbers were and how he was doing and if he was having any fun at all or was he just terribly homesick, that I had to take an Ambien every night to ensure that I actually slept. But then my days were filled with work and Oz rehearsal so the week really flew by! And he had a great time! He did not brush his teeth even once while he was gone, but he had fun! He had fun and we got a MUCH NEEDED break! So I’d say it was a success!

I really struggled when he first got back from camp. His emotions were all over the place and I think he was exhausted. And then there were his blood sugars. They were SUPER high when he got back from camp. I was really feeling guilty about how I was feeling; that it was so nice while he was gone. We could eat food without thinking about what it was, how many ounces it was and how many carbohydrates were in it. The house stayed picked up, there was no arguing between the other boys, there was so much less stress in the house with him gone. Because besides having T1D, Medium also has ADHD and that, sometimes, is harder to deal with than the diabetes. At least with diabetes you know what you are trying to accomplish. It might be extremely difficult sometimes to hit that moving target, but at least I know that I am trying to hit the target. I know that I need to keep his blood glucose between 70 mg/dL and 140 mg/dL at all times. That is my goal. And to accomplish that goal, I check his blood sugar often and then I either feed him or give him insulin. I am over-simplifying this to make my point, which I will get to, someday.

With ADHD, I HAVE NO IDEA WHAT I AM DOING! (hey, look at that, I got right to the point! Not usually my style!)

There is no rule book. When he lies to me, I don’t know if that is him being a pain in the butt 10 year-old or if that is his ADHD. When he sneaks food, I don’t know if that is him just taking what he wants because he is a kid, or if it is the uncontrolled impulses of his ADHD. When we ask him to take a shower and he yells at us and tells us that he’s not going to do that and that we are stupid, is that just him being defiant, or is that his ADHD? And then when we finally drag his sorry butt up the stairs and walk him into the shower and then he comes out of the shower with dry hair and puts on dirty clothing, is that just him being lazy, or is that his inability to focus and complete tasks with multiple steps that is a hallmark sign of ADHD?

The answer is, I just don’t know. And I don’t know what to do about it. We have tried everything. We have punished, we have yelled, we have taken away privileges, we  have spanked, we have tried natural consequences, we have done it all. NONE OF IT MAKES A SHIT BIT OF DIFFERENCE! Which is what makes me think, it is more his ADHD than anything. So then what do we do? Just let him get away with this behavior? ADHD or not, this kind of behavior is not acceptable and should have consequences. So he is either ALWAYS in trouble, or just walks scott-free. I feel bad when he is always in trouble, especially if he really can’t control it, but I can’t stand the behavior!

We have been dealing with these issues all of his life (and for the record, he does take medication for his ADHD). Then he was diagnosed with diabetes and things have gotten worse. Now there are far graver consequences to him sneaking food (one of his favorite pastimes). And for the first six weeks after diagnosis we were waking him up in the middle of the night to feed him because he was low, so we knew he wasn’t sleeping well, so we chalked up his bad behavior to being tired and not feeling well from blood sugar swings of highs and lows. And then, of course, there is the  simple fact that the kid was diagnosed with a life-threatening, chronic disease with no cure. So of course we wanted to cut him some slack.

But it has been six months since diagnosis and we have got to get a handle on this situation. We got the name of a counselor from a friend and I think we need to take him. Not just for us, but for him. Honestly, he doesn’t seem to be bothered too much by his diagnosis, but I know that he might be keeping it all in, or not know how to talk about it.

So we will try this.

Because if we don’t….

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WARNING! Rated R Due To Explicit Language!

It is widely accepted that people who use foul language are uneducated and just can’t come up with other words.

That’s just not fucking true.

I am an intelligent, college-educated person who knows a plethora words. And I never used to use curse words very much. First of all, my parents didn’t use them, and since children learn from those around them, I just didn’t use them. (So sorry mom, but I suggest you stop reading this right now. If you choose to read on, please don’t be offended or think less of me :))  But the older I get, I find myself using them more and more.

Well, that’s what I thought.

Turns out it is the angrier I get, the more I use them.

And let me tell you people, I am one angry son-of-a-bitch these days. Turns out that I have made it to a new level of anger and emotion and the only way I know how to express that is through profanity. So I apologize, but I’ve just got to get this shit out!

And who do I have to thank for that?

Fucking diabetes.

Fucking diabetes moved it’s fat ass into my life and has a choke-hold on my sanity. I am trying my best to not let it get the best of me, but I feel like I am drowning. I am effing loosing it!

My marriage is suffering, my relationship with my kids is suffering, my finances are suffering, my work is suffering….my sanity is suffering. I just cannot be every fucking thing to every fucking person in my life right now, and I FUCKING HATE IT! I am trying to do everything I did before fucking diabetes took over my life, and on top of it keep my son’s blood sugars low enough that he won’t get sick and die but high enough that he won’t get sick and die. I have a small window between death and death that I have to keep my son, at all times, whilst still being a good wife, mother, sister, aunt, cousin,  friend and employee.

And the thing is, no one else really gets it. My husband doesn’t get it, my kids don’t get it, my friends don’t get it, my coworkers don’t get it, my boss doesn’t get it. I’m not saying that some of them don’t try, but they just can’t know how I feel and what I am going through and that is so lonely and scary. Even other D-parents don’t know exactly what I am going through because, as similar as our journey’s are, they are each individual. People can empathize, but it is a journey that, ultimately, I have to walk alone. And what is really so heart-breaking about that is the reality that it is the same thing for Medium. I cannot know what he is going through or will go through as a person with diabetes. I can empathize, but he has to walk that journey alone, and that scares the shit out of me. I just want so fucking badly to take it from him.

I will be right beside him every step of the way, but it is his journey.

The control freak mother in me just cannot accept that.

The mother in me cannot accept that he has to count every carbohydrate that he eats, that he has to stab himself 10 times a day, that he cannot have a Gatorade after soccer with all of his friends, that as he gets older his insulin needs are going to change and undoubtedly he is going to have severe highs and lows because of it and he will feel like shit, that he will have to be very careful about drinking alcohol when he is in college, that he will have to find someone willing to take all of this on when falling in love and finding a spouse and that he will have to worry that he will pass this dreaded disease on to his own children one day. AND THERE IS NOT A FUCKING THING THAT I CAN DO ABOUT IT!!!

I just cannot accept that.

But life goes on. And don’t worry, no one has to put me on suicide watch. I just needed to get that out. I know it wasn’t very couth, or professional or lady-like or mature, but it was real.

And at the end of the day, that is all I have.

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Eighty Dollars

What does $80 buy you these days?

Not as much as it used to, that’s for sure.

But for $80 you can get a cute pair of shoes.

You could get a cute purse to go with those shoes.

You could get a designer pair of jeans to go with said cute shoes and cute purse.

For you guys out there, you could buy a round of golf with cart, drinks and lunch.

Or you could get a Grip-Rite 1 In. Narrow Crown Stapler 18 Gauge from Home Depot….whatever the heck that is.

And, $80 is how much we spent on Sunday to take our family of 5 to the movies, complete with popcorn drinks and candy.

$80 is also how much it costs to fill my son’s insulin prescription every couple of months. (We are lucky and have insurance so for many it is much, much more.)

$80 to keep my son alive.

Seems ironic that I could either buy a new pair of shoes, or keep my son alive.

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Sleep, Come Out, Come Out Wherever You Are

Medium had a late basketball game last night. He played well and was hungry after, so we let him have a chicken sandwich and hot fudge sundae from McDonald’s. By the time we got home and counted carbs, it was 9:30. The total carbs for his “little” bed time snack was 95.

He ate his food, took a shower and went to bed.

Around 11:00 I came upstairs and looked at the MySentry which showed his BG was in the low 300’s (can’t remember exactly what it was.) A finger stick confirmation showed he was really 389 mg/dL! What the hell???

This could only mean one thing. Medium forgot to dose.

A quick look into his pump confirmed. The last bolus given was at 6:22.

UGH.

Two correction boluses, several hours, finger sticks and zero sleep later, he was back in normal range.

I hate diabetes.

I will never sleep again.

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Diabetes Playlist

When I fired up my new Prius this morning it somehow automatically started playing songs from my iPhone. It was very perplexing; I don’t remember setting that up, but whatever. I figured I would just go with it. It was actually a nice change from the morning radio talk show that I usually listen to. But the next thing I knew, I was crying. It was as if “The World’s Saddest Songs” playlist had made its way into my iTunes. The first song that came on was a real heart-wrencher, Tim McGraw’s “Don’t Take the Girl.” Kind of caught me by surprise, but hey, it’s an emotional song. Then came, “Total Eclipse of the Heart” by Bonnie Tyler. “Once upon a time I was falling in love, now I’m only falling apart.” Just rips at your heart, right? Next up, “Copacabana.” Still crying. Hmmm, well you have to admit, it’s kind of tear-provoking. Lola and Tony are in love and now Tony is dead. Okay maybe that one is a stretch.  I think it was somewhere between “Love Shack” and “Welcome To The Jungle” that I realized that it was not just the music that was making me cry.

It was the damn diabetes.

Somehow the music of my yesteryears brought on a firestorm of emotions. Wishing I could take diabetes from him and give it to myself. Shuddering at the thought of every finger stick, injection, site change and CGM insertion he has had to endure. Imagining how awful he must feel when he is sky high or bottoming out. My heart was aching for how alienated he must feel now. Wincing at the thought of how scared he must be at times, and sickened by what thoughts he might be wrestling with about his future.  It is just more than any kid should have to deal with and I wanted to take it all from him.

That’s just the cold, hard truth that is diabetes. Sometimes it catches up with you and overwhelms you. And you just need to go with it. Ride it out. Because no matter how unpredictable diabetes is, there is one sure thing; the sun will rise again.

But listening to these songs got me thinking. I need to put together a diabetes playlist. I need a group of songs that will fire me up when I am down.  Songs that will make me feel empowered to seek change, and hopeful for a cure and a better life for my son. Songs like Christina Aguilera’s “Fighter” and Michael Jackson’s “Man In The Mirror” and “We’re Not Gonna Take It” by Twisted Sister.

What inspiring songs would you suggest I put on my “Diabetes Playlist?”

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The Honeymoon Is Over

“The Honeymoon Period.”

Sounds like a good thing, right? Who doesn’t love a honeymoon? Me, that ‘s who. I assure you this is not the “take romantic walks on the beach” kind of honeymoon.

Let me give you a little background. (Remember, I am not a doctor, even though my initials are DR).

So, your body has decided that it is going to now attack the islet cells on your pancreas that produce insulin, thus rendering you diabetic. But your body doesn’t go out in one day and kill all of the cells. It starts attacking them and they systematically die off. When enough of them have been destroyed, the glucose is no longer being carried out of the bloodstream and into the cells to be used for energy, so you gradually start showing symptoms. Everyday, more islet cells are destroyed. Eventually, the insulin that is still working is over-worked and decides to go on strike. It can’t keep up, so it stops working. So one day your islet cells are producing insulin, and seemingly the next day (it doesn’t really happen that quickly), many of the cells are killed and the ones that aren’t killed, are refusing to work.  So boom! Virtually no insulin working in your body and you get really sick, really fast (DKA).

Not every person who is diagnosed with type 1 diabetes goes into DKA. In fact, Medium was one of those who didn’t. I like to think it was because of my keen awareness and attention to detail that I was able to identify his symptoms fairly early on, but who really knows. Nonetheless, the staff in the ER kept commenting on how kids usually are so much sicker than Medium when they come in. It was almost as if it wasn’t really happening because there didn’t really seem to be a real emergency, even though his blood glucose level was 565 mg/dL. (A healthy blood sugar level is between 70 mg/dL and 140 mg/dL). Everyone was very chill, everyone except Medium’s pediatrician whom I am sure was still sitting back at his office with his mouth agape. (He too didn’t think Medium looked sick and was quite shocked at the results in the office). As a former ER worker, I almost felt like I needed to apologize for disappointing them with our drama-free presentation!

But I digress.

Back to the honeymoon.

So, you’ve now been diagnosed with type 1 diabetes. (We aren’t even going to go into how sucky that is in and of itself, you’ve heard enough of those rants from me). And the treatment (not cure) for this diagnosis is insulin. So you start giving yourself synthetic insulin via injections into the subcutaneous tissue of your arm, thigh, belly or buttock and now your body has what it needs to carry the glucose, that comes from the foods you eat, out of your bloodstream and into your cells to be used for energy. Yay. (Please notice the purposeful exclusion of an exclamation point here. While all diabetics and their caregivers are ever-so-grateful for the invention of synthetic insulin, it is not a cure. So, until there is a cure, you get no exclamation point. Sorry.)

But guess what? Remember that insulin that your own body was still producing but had gone on strike? Well, it has accepted the terms of the negotiated settlement and has now agreed to start working again, now that it has the help of the synthetic insulin. So, you have synthetic insulin and your own insulin, and guess what? Now you have too much insulin. And guess what? Too much insulin will kill you. Yeah, this would explain my love-hate relationship with insulin. The very thing that my son needs to stay alive, can also kill him. Super.

This period of time right after diagnosis when your body’s own insulin starts working again, is called the Honeymoon Period.  (Hmmm, seems I could have gotten to this point faster, oh well.) The problem with the honeymoon period is that you don’t know when your body is going to kick out some insulin and how much it is going to kick out, so you are on the blood sugar roller coaster. Never really knowing how much synthetic insulin to give yourself. You do your best to come up with an insulin to carbohydrate ratio, but the hard truth is that, sometimes, you get it wrong.

While there is currently research being done on preserving those islet cells in those newly diagnosed with T1D, the outcome remains the same. Eventually all of those cells are going to be destroyed. So I have been saying all along, “just die already islet cells!” That way we don’t have to guess anymore how much insulin Medium really has working for him.

Well friends, I think the honeymoon is over. His blood sugars have gone up across the board. And I thought I would be relieved when this finally happened, but I am surprisingly saddened by it. I guess it just puts the proverbial nail in the proverbial coffin. The death of his pancreas.

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Did I Ever Tell You You’re My Hero?

Today’s theme: Diabetes Hero

“Let’s end our week on a high note and blog about our “Diabetes Hero”. It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3. It might be a fabulous endo or CDE. It could be a d-celebrity or role-model. It could be another DOC member. It’s up to you – who is your Diabetes Hero??”

All of the above.

Really.

I am almost 4 months into my journey as a mother of a child with diabetes, and I can ‘t believe how many amazing new people I now know because of it. (And some people for whom I have known a long time but now have a new-found respect).

We have an AMAZING diabetes educator. I wish I could just keep him in my pocket and reference his brain whenever I need to. Medium’s pediatrician and endo are awesome too. All of the staff at Children’s Mercy Hospital are at the top of their game.

Medium’s school nurse has gone above and beyond in making me feel at ease while he is at school all day long.  His teacher, the principal, all the school staff have rocked.

A woman, whom I had not met in person until today actually, hooked us up with a scholarship for Medium to go to diabetes camp this summer. How awesome is that?

The women of the DOC that I have met this week alone through Diabetes Blog Week have been nothing short of inspirational. And not just the one’s who have multiple children with T1D and husbands with cancer and other children with horrible diseases besides T1D, all of the women who are brave enough to put their inner-most thoughts and feelings; the good, the bad and the ugly, out there for the whole world to see and learn from.

My sister-in-law who, although she has lived with this disease for close to 40 years, doesn’t let diabetes define her. I have known her for twenty years and only in the last 4 months have I realized what all she has had to endure. And things are so much easier now! Even though my own sister-in-law has T1D, I never knew how serious or complicated it was because she made it look easy. It is a part of who she is, it is not her identity. She is a very creative, artistic person and is a great writer. She has always worked in publishing, and now she works for the ADA. She is a huge advocate for diabetes and is an amazing role model to Medium of what it looks like to live with type 1 diabetes. (Plus she doesn’t make me feel bad that I don’t change the lancet on the poker as often as I should!)

My mother-in-law, who went through everything that I am going through, 40 years ago when they used pig insulin and didn’t have glucometers, and didn’t even know what a healthy blood sugar was. I know that if she was able to raise my sister-in-law to be the smart, creative, kind, successful person that she is with virtually no tools to help her, then I can certainly do the same now with all of the advanced technology out there.

Everyone who gets up every morning and goes to work or school, who cleans their house and does laundry, takes care of their kids, runs corporations, plays professional sports, contributes to society and doesn’t let this disease tell them they can’t.

But most of all, my Medium. He does not complain. He does not ask why. He counts his carbs. He gave himself shots. He sticks a needle in his finger 10 times a day without so much as a whimper. He knows how to navigate his insulin pump. He gets A’s in school. He plays soccer. He plays basketball. He plays football. He loves his dog. He tolerates his brothers. He hates taking showers. He loves peanut butter crackers. He gives the best hugs. He is 10 years-old and is scared about what diabetes is going to do to his life.

But you wouldn’t know it.

He is my true hero.

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You Look Marvelous, Simply Marvelous!

Today’s theme: Saturday Snapshots

“Back for the third year, let’s show everyone what life with diabetes looks like! Let’s grab our cameras again and share some more d-related pictures. Post as many or as few as you’d like. Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.”

Medium on his first day of school this year. Pre-diabetes.

Medium in the ER the day he was diagnosed.

Large and Medium playing Xbox in the hospital

Our new reality

The highs of diabetes

And the lows

Diabetes hasn’t slowed Medium down a bit!

Looking all cute with his faux hawk

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He Ain’t Heavy, He’s My Son

Today’s theme: What They Should Know

“What is one thing you would tell someone that doesn’t have diabetes about living with diabetes? Let’s do a little advocating and post what we wish people knew about diabetes. Have more than one thing you wish people knew? Go ahead and tell us everything.”

Once again, my new friend, Meri, hit the nail on the head with this one. She actually wrote the post 2 years ago, but it does a phenomenal job of giving you just a peek at what a day in the life of a diabetic is. I encourage you to read it here.  Our Diabetic Life

But re-posting all of Meri’s posts kind of defeats the purpose of having my own blog, even though somehow she has all of my thoughts in her swelly brain. So I shall come up with my own version of basically the same concept.

“He ain’t heavy, Father…he’s my brother.”

This is the motto for Boys Town, a community formed in 1917 by a Catholic priest named Father Edward Flanagan. It is located in Omaha, Nebraska, where I grew up. Basically, it is the only incorporated village in the nation created exclusively for children in need of a fresh start in life.  It is a very cool place. But I have always loved this statue and the meaning behind it. It speaks to the very core of basic humanity. It doesn’t matter how hard it is, it needs to be done and, therefore, I will find a way to do it. (Kind of the deeper, more eloquent predecessor to Nike’s slogan, “Just Do It”, which is also one of my favorites).  Maybe growing up driving by that statue is why these feelings are ingrained in me.

But that is why I do what I do in regards to Medium’s diabetes. It sucks. And it’s hard. And it’s complicated. And it is exhausting. And if it doesn’t look like that to you, that is because we are KICKING ASS at managing his horrible disease. And it is manageable. But if we don’t manage it, for even a minute, he could die.

HE COULD DIE.

So, yes, when you see me at work, or up at one of the boys’ schools or activities, or wherever you see me, and it looks like everything is just hunky dory, that is because we are not going to stop living our lives and dwell on this. We are not going to walk around with our heads down and the letter D sewn into our chests.

But just because we are happy and smiling and seem to just check a blood sugar and punch a few buttons into a pump, doesn’t mean that diabetes isn’t a horrible, complicated, deadly disease with no cure.

Just know that behind the scenes we are working very hard to hit a moving target. (Again, please read Meri’s post, it really puts it in perspective. Here it is again so you don’ t even have to scroll back up to click the link!  Our Diabetic Life).

The one thing I want you to know about diabetes, is that I do what it takes, because he is my son.

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