Tag Archives: health

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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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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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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Diaversary

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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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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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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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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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Would You Rather….

I heard that the new Dexcom G4 continuous glucose monitor just got it’s FDA approval so I went to their website to do some research. Medium has the Medtronic CGM and I hate it almost as much as he does. It is not very accurate and we have not used it since June. We have been managing just fine without it, but if new and better technology exists for my son, I want to check it out.

So, anyway, I watched the little video and then poked around the website some. And then there she was. The woman who made me think to myself, “I would take diabetes if I could have her body”.

Can you believe I actually thought that? That knowing what I know about diabetes and it’s devastating affects on people, that I would actually wish for it?

I was immediately ashamed for thinking it. I have watched what my son goes through first hand and to think something like that somehow diminishes it’s seriousness; makes it like some kind of non-threatening, little “issue” that is not any big deal.

But it speaks volumes about my issues with body image. This woman was very thin, but not too thin, looked great in a pair of jeans and had a very nice, um er, chest area. She was perfectly proportioned.

She was a model and probably airbrushed. But still. I would give anything, even my non-diabetic status, to look like her.

So this got me thinking.  

Number 1: I have issues and probably need professional counseling.

And Number 2: How desperate for youth and beauty have we become as a society? How far will people really go to achieve the ultimate look? If I really could trade my health for that body….would I really do it?

I know you are thinking, “no, of course you wouldn’t”….

But I’m not so sure. (Yes, I know, I need therapy.)

So here’s my question.

What would you give up and for what, if you could? Would you give up your sense of smell for a wrinkle-free face and no gray hair? Would you give up sex for the rest of your life if you could be a blue eyed, blonde bombshell? Would you take on a life threatening, although manageable, disease with no cure, for the perfect body?

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It’s Not Fair, This is Wrong, This Sucks!

I haven’t been blogging much lately. I have been busy, but that’s not really the reason. I tend to blog when my emotions are running amok. And I guess my emotions have been in check all summer. Despite some CRAZY highs all summer, diabetes has been playing fairly nicely at our house recently.

But for the past 3 days my emotions are on over-drive and I just have to write. And I have to be honest here and tell you that I don’t really have the right to be emotional about this one. And it’s not even about diabetes, directly anyway. I mean, a woman whom I don’t really know, except virtually, and have never met or had a conversation with, who lives thousands of miles away, lost her husband to cancer on Monday.

Doesn’t seem like it should affect me at all really.

Except that it does.

That woman and I are connected in a way that I can only share with a handful (okay, maybe a few more than a handful) of people, none of whom are my family members or friends.

That woman’s name is Meri Schuhmacher and she is kind of my hero, although she doesn’t know it, and if she knew how I felt about her, and how I stalk her blog, she would thank God that she lived thousands of mile away and then she would probably call the police!

I have talked about Meri to my friends, family and coworkers ad nauseam. And I have written about her and linked to her blog, multiple times in my own posts. I referenced her indirectly in “Did I Ever Tell You You’re My Hero?”. Gave her blog a shout-out in “I Have No Friends”, and shamelessly pimped her blog out not once, but twice, in “He Ain’t Heavy, He’s My Son”.

Her blog was one of the first ones I found after Medium was diagnosed. And honestly, immediately after stumbling upon it, I wanted to forget I ever found it. I had just fallen into the deep, dark pit of despair (DDPOD for short) and she was my worst nightmare come true. Not one, not two, but THREE boys with type 1 diabetes. I have three boys. The thought of my other two boys developing T1D was more than I could handle. I closed the lid of the laptop faster than a teenager getting caught looking at porn after I read her story.

But I came back, time and time again. Not in the “horrible train wreck that you can’t look away from” way, but in the, “this is the most humble, positive, real, genuine woman” kind of way. I felt a pull to her and her words. She comforted me in a way that people I have known my whole life couldn’t. It was a kind of “she so knows what I am going through” sisterhood that is rare and unique, but vital to anyone who goes through something like a child’s life-threatening diagnosis.  I have relied on her words time and time again over the past 8 months, and she doesn’t even really know who I am. In fact, hundreds of others rely on her wit and wisdom to help navigate the diabetic waters. She is like the Matriarch of the DOC (diabetes online community). She has blazed the path of raising diabetic kids. She’s not the first to do it, but probably the first to be so transparent and accessible to the rest of the world.

About a month after Medium was diagnosed, Meri posted that her husband’s cancer had returned in the form of metastasized melanoma. Over the next six months I watched (or rather, read) her face cancer and life with three type 1 kids in a raw, honest, humorous, loving and faithful way. Despite the dismal statistics of her husband’s diagnosis, Meri championed on as only Meri can. She would blog to the world about her fear and her moments of despair, and then turn right around and announce that she and her family were choosing hope, that there was no other option than to put one foot in front of the other and keep moving forward.

It was truly amazing to witness her fortitude and her surrendering to God’s will in such a dark time.

For the past three days, I have been struggling with my anger on behalf of my friend (it’s weird how I call her my friend when we don’t really know each other, but that is how she makes you feel, like she is your friend).

Unlike so many other couples, she and Ryan were actually in love with each other and best friends. Why couldn’t cancer take someone else’s husband, someone who didn’t really love their husband?

Meri was already dealt the crappy hand of having THREE kids with a life-threatening chronic disease with no cure. Why couldn’t cancer go pick on someone else who didn’t have such a full plate?

Meri chose hope and remained positive, put her faith in God and believed in a miracle. And for what? So cancer could rob her of  precious years left with her beloved and rip her family apart?

And what about the boys? Four boys are left without a father. Meri has to somehow help her children grieve and hold them when they are falling apart. But she has to grieve, too. And what happens when she needs to fall apart? And let’s not forget about diabetes. I can’t imagine how crazy the boys’ blood sugars are right now with all of the stress.

I feel guilty that my husband is healthy and that I fight with him. I feel guilty that I only have one child with T1D. I feel guilty that I don’t have to face this life alone.

I have read hundreds of Facebook and blog comments written to Meri over the last three days. And they all say the same thing. How sorry everyone is. How they wish they could take the pain away. How there are no words.

Yes there are words.

IT’S NOT FAIR!, THIS IS WRONG!, THIS SUCKS! are a few G-rated ones that come to mind.

Watching this happen to this family has made me question my faith. I don’t know why this has happened to them. I know that life goes on, and people eventually pull themselves up by the bootstraps and carry on.

But for right now, I can’t stop thinking about them. And I can’t stop being angry.

And if you can and you feel it in your heart to help financially support Meri and her boys, as Ryan was their sole source of income, please do so through this link.

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