Tag Archives: carbohydrate counting

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

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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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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Jun 25 2012
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It Ain't Always Pretty...But It's My Life

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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Jun 06 2012
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It Ain't Always Pretty...But It's My Life

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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May 20 2012
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It Ain't Always Pretty...But It's My Life

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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May 16 2012
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It Ain't Always Pretty...But It's My Life

I Am Kicking Ass Over Here!

Today’s theme: One Thing To Improve

“Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at. Today let’s look at the flip-side. We probably all have one thing we could try to do better. Why not make today the day we start working on it. No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!”

This week has been so busy with school year-end activities: field trips, awards ceremonies, concerts and the ever-so-prestigious-and-totally-necessary (enter eye-roll) Pre-School graduation (hey, I am all for celebrating my kids and their accomplishments, this is just one that I think is a little silly and self-indulging, but what the hell….) that I have not been able to get my posts for D-Blog Week up until almost 11 p.m. We were done with all activities by 7:00 tonight so I thought I would be able to post sooner but alas, here I am, the late night poster again. But the reason for my tardy post is a good one. I have been overwhelmed with the amazing and totally supportive comments from all of my new friends! Just think, on Monday, no D-friends. Two days later, so many I have lost count! What an amazing community that is the DOC! Someone said it is the greatest club you never wanted to be a part of! Ain’t that the truth! I have never been so easily accepted into a group before. If you have or care for someone who has diabetes, then you are in, and in with love! Simply amazing!

Well, after all that sticky-sweet (pun intended) talk, it’s time to trash myself. I told you yesterday that I am much more comfortable at finding my faults. Actually I don’t have to find them at all, rather I try to hide them. Sigh.

So grab yourself a cup of coffee, (or vodka, I don’t judge) and pull up a comfy chair because here goes….

I need to be a better, wife, mom, sister and daughter. My family bears the brunt of most of my flaws.

I need to eat better, exercise and loose weight.

I need to stop buying bags and purses.

I am addicted to McDonald’s fountain diet Coke.

Oh wait, this is supposed to be something I could improve on related to my son’s diabetes…..sorry, I am so well aware of my flaws that they just roll off the tongue!

Hmmmm…….let’s see….something to improve on….um….well, there is….no. Well, what about….huh, no. Okay, okay how about…. hmmm……well this is awkward. I can’t really think of anything. It’s ironic. I am keenly aware of all of my personal faults, but when it comes to Medium’s diabetes, I AM ALL OVER THIS SHIT!!! Don’t get me wrong, I make mistakes, there are too many moving parts of diabetes care for even the long-time veterans to not make a mistake now again, but for a rookie such as myself, I pretty much ROCK! (Anyone else find it interesting that in the post where I was supposed to praise myself, I could barely do it, but here where I am supposed to call myself out on something I am calling myself a ROCK STAR?) But seriously, a carbohydrate doesn’t enter Medium’s body without me knowing about it, we have test strips, glucose tabs and snacks with us at all times, we have glucometers and cake gel in every level of our house and in both cars, I download Medium’s pump and pour over his numbers every 3-4 days, I buy home A1c kits so I won’t have to wait 3 months to know how he is really doing, I talk to the school nurse daily. Actually at Medium’s three month check up the other day the diabetes educator was almost irritated that I already knew everything he was going to tell us after downloading the pump; when Medium tended to be high, how close his CGM was to his meter BG’s, what his A1c was.  I am telling you, I AM KICKING ASS over here!

But it is exhausting, draining, paralyzing and all-consuming and my personal health and relationships are suffering because of it. I need to learn how to let up a little bit. I need to understand that I can’t be in control of this horrid disease at all times. I need to remember that I have two other kids who need me, too. I need to praise Medium more often for being such an easy diabetic kid to take care of. I need to remember to breathe.

Huh, look at that, I do have some things I could work on!

(You didn’t really think I was that conceited, did you?)

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May 15 2012
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It Ain't Always Pretty...But It's My Life

A Shout Out To Myself

Today’s theme: One Great Thing

“Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”. But today it’s time to give ourselves some much deserved credit. Tell us about just one diabetes thing you (or your loved one) does spectacularly! Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes. Nothing is too big or too small to celebrate doing well!”

So you can see from the description that I am supposed to sing my own praises. I like to sing other people’s praises. I find self-deprecating behavior so much easier. I am my own worst critic. So I will start this post by singing others’ praises and we’ll see if I get around to the “tooting my own horn” part.

I was so excited to be a part of Diabetes Blog Week. I have only found a few other D-blogs even though I knew there were others out there. I just haven’t had time to find them. Being a D-mom can be lonely. You feel isolated. You feel like no one really knows what you go through on a daily, no make that hourly, basis. And if you do it well, make it look too easy, others really don’t know what you go through. So I couldn’t wait to find other D-moms to commiserate, and at times, celebrate with.

WOW.

I was overwhelmed today.

Around mid-morning at work I decided to check my personal email. Sometimes Medium’s school nurse emails me with questions or just FYI’s so I like to check it every so often. I couldn’t believe my eyes….several comments from other D-bloggers! I have had more hits today than ever before, I even had someone from Pakistan visit my blog! I’m international! And even though I started this blog for myself and to vent my feelings for myself, I have to admit, it is exciting and rewarding to know that others are reading and may be inspired, entertained, (or infuriated, as the case may be) by my words. And I have over a hundred new blogs to work my way through now! I can’t wait!

And here is the mouth-gaping-open thing I have learned about the DOC (diabetes online community). Even though yesterday none of these people knew me or knew of me or knew anything about me, today we are connected in a way that I can only share with them. It’s like when your child (or yourself) is first diagnosed with type 1 diabetes. One day you know nothing about the disease and, quite literally, the next day you could teach a class on the relationship between blood sugar, carbohydrates and insulin. Diabetes puts you on the fast track, both in education about the disease and anatomy and physiology of the human body. But it turns out it puts you on the fast track to immediate, deep friendships, too. And that part is amazing. Those blogs that I mentioned yesterday that I was in awe of, somehow each one of them found out that I mentioned them and each one of them messaged me with the most sincere words of praise, understanding and encouragement. I so wasn’t expecting it, and I actually started crying, right there at work in my chair with my coworkers looking at me like I was nuts (they do that a lot though 🙂 )

Imagine that feeling when you’ve been stranded, alone, on a desolate island and you realize that you are being rescued. That is how I felt. Those comments from those D-Moms (and others too!) were my life raft. I know it’s just a dinghy in the vast ocean that is diabetes, but I know now that I am drifting back towards civilization and these other moms are going to be my survival fuel. So a huge THANK YOU to them!  (And a special shout out to Laura of Houston We Have A Problem, for telling me how to add the banner!) I know I am going to learn so much from these women (and some men, too!) about things diabetic and not, and I am so re-energized by this. (The first piece of advice from someone will probably be to shorten my posts. I am well aware that they tend to be a little long in the tooth, but if you knew me, you would know that this is who I am. I am cognizant of it and will try my best to have relevant, educational, entertaining, passionate, SHORT posts whenever possible–but don’t hold your breath, I got shit to say! 🙂 )

So I promised to try and pimp myself out a bit, so here goes.

I am a great FAKE nurse.

I have a Bachelor’s degree (not in nursing) and worked a fancy corporate job back in the day, but quickly ditched the pantyhose (yes, we still wore pantyhose in those days) for poopy diapers when Large was born. By the time Medium came around 2 years later, I was desperate to use my brain for something other than nap time nursery rhymes and stimulating toddler talk. So I got a job as a Unit Secretary in an Emergency Room. I. LOVED. IT. I got to be near the action, but no one was going to die if I didn’t fax the correct piece of paper. I worked there for 9 years until a year ago when I went to work in the IT department for the same health system (it was time to start making a little more money for my time). I sat next to the ER doctors and nurses for 12 hours at a time learning from them. That has proven to be great training for being a D-mom.

So I do a pretty good job at all the nursey stuff that comes with having a D-kid (and there is a lot of it!) And while my time in the ER has given me more medical knowledge and experience than the average bear, I, in no way, compare to the true greatness that is a REAL nurse!

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May 02 2012
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It Ain't Always Pretty...But It's My Life

It’s My Blog And I’ll Cry If I Want To

I have been writing a lot about myself lately. This life-changing curve ball that has been thrown at me has really knocked me off my center and I am struggling to find my way back to equilibrium. And, this is my blog so I’ll cry if I want to. But I do want to make a few things clear.

#1-No matter how bad things seem on some days, I am well aware that they could be much worse. I know there are people out there who might look at my situation and think it was a walk in the park compared to what they are going through. And I know, and am related to, some people who would probably give their right arm to have our issues instead of their own. I never want my writing to sound whiny. I know that despite the hand we have been dealt, we are still abundantly blessed and I try hard to remember to find those blessings each day.

#2-I am not exhausted because my kids are over-involved in after school activities. I am exhausted from 3 continuous months of fragmented sleep. Period. Each kid only has one activity right now, and to be totally honest, thinking about going to watch one of them play or perform on the weekend is the only thing that gets me through the work week. So yanking them out of their activities will not solve my exhaustion problem.

#3-My husband is not nearly as affected by all of this as I am. I guess you could chalk it up to men just being a more simple creature than us complicated women folk. My husband pointed out to me after reading some of my posts that we have very different feelings about the way things are going. While I am exhausted, stressed, overwhelmed, worried, anxious and sad, he is just, well, fine. I mean, he doesn’t over analyze anything. It just is what it is for him. How I wish it could be that simple for me. I guess in a way it is good that it is so cut and dry for him, because I don’t know what we would do if we were both wound as tight as I am, but conversely, he knows that I am worried enough for the both of us, so managing Medium’s diabetes has fallen 100% on me. A friend commented the other day at how well Medium seemed to be doing and my comment was, “yes, he is doing great, because he isn’t the one managing his diabetes, I am.” I am the one running around with a net making sure that if, despite my best efforts, he falls, I will be there to catch him and he won’t get hurt.

#4-Having just said that Medium isn’t managing his diabetes, is kind of not true. I mean, he doesn’t make his own endo appointments, and he doesn’t make sure he has enough supplies and then call in his refills to the pharmacy or pour over doctor/hospital bills, but for what he can do, what a 10 year-old is capable of, he is a ROCK STAR! He makes me so proud. Other than a not-so-minor problem of him sneaking food (the chocolate chips and who knows what else he got into last night had him in the 300’s all night) he is all over the details of his disease. He accurately counts carbs, has mastered giving himself a bolus and all of the settings of his pump, and is very in-tune to how his body feels. He also understands the somewhat complex (at least for a 10 year-old) relationship between specific foods, insulin, his blood sugar, and his continuous glucose monitor. He told me that today his pump kept beeping at him to alert him of a low while he was at school. I asked him what he did. He said that he didn’t do anything because he knows that there is usually a lag between his CGM reading and what he really is, and he had just eaten a snack without dosing so he knew he would be fine. I seriously had to fight back tears. Tears of sadness that he has to mess with all of this when he should just get to be a 4th grader at school, but tears because I am so proud of how he learned all of this and how he just accepts that it is what it is.

#5-If I could learn to just accept that things are what they are sometimes, I would probably be a lot less stressed. My husband and Medium are the two least stressed people I know. When I am done crying, I will work on that!

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