Our own worst critics

Today I've learned that I really just dont give myself enough credit. My A1c came back at 6.9% when I was SURE it would be darn smack in the middle of the 8's (based on my own crazy logic)if not higher. But no, as usual...my A1c was nowhere near what I expected. THANK GOODNESS!!

This morning Maddison and I both had Endo appointments, our last appointments were back in February!! 8 months ago!! I thought I was really gonna hear it. I thought our Endo would be totally disappointed in me....but all I heard was how great we are doing. Whaattt? We are? I feel like we are a mess!! Sometimes I guess we really are our own worst critics!!

My blood sugars during the day have been great, but Ive gotten super lazy and careless with carb counting and eating too much junk by the evening hours. This really IS an easy fix ....stop eating JUNK!! Im pretty ticked off at my new bad habit, but I like to blame my increased dose of bio-identical hormones for making me food crazy some days. Tired? Stressed? Bored? Whatever the real underlying reason (reasons!) are, it has caused me to gain 5lbs which is even more ICK since Ive recently turned 35!! I need to get back into shape cuz I aint gettin any younger!!

Tomorrow is a new day! One step at a time I will kick this terrible eating habit to the curb and hopefully have my A1c greatly improved just based on breaking this bad habit alone. I know I CAN do it, I just have to put forth the effort and walk away from the cupcake!! Measure what Im eating....give SOME effort!! Im sure it would also help if I started working out more, cuz who wants to eat junk after you worked your butt off in the gym? The good news is that with the cooler weather Im ALWAYS wanting to be outside so I can already say Im on the road to doing better anyway. Now if we can just make it past the holidays and all the dang FOOD!! Its kinda funny how Im suddenly feeling the motivation to do better with my eating habits since my A1c just told me I'm not such a mess afterall....weird how that happens.

Maddison? Well, Maddison has grown 3 inches since her last Endo appointment!! THREE INCHES!! Her A1c was GREAT, especially considering the pre-teen craziness we are learning to manage. This pre-teen D life can surely be alot more work than when she was little! So, Maddison has the ok to just see the Endo once a year (unless I feel the need to schedule of course) but strangely enough I need to be back in just 3 months thanks to my current hormonal chaos that always seems to need tending to. YUCK.

Our 6th JDRF walk is next weekend. WOW how time has flown!! The little girl I used to worry about every second of every single day is now a pre-teen with 6 years of Diabetes under her belt. She is crazy healthy, growing like a weed, and super responsible with caring for her Diabetes. Now lets just hope and believe it will all stay this way for awhile!

***Blog edit***

I finally got to review the paperwork I brought home from the Endo's office today, and what I see is quite interesting...

My finger poke A1c in the office today was indeed 6.9% but the lab draw from 11 days ago shows shows a 7.5%!!!!!!!!!!! Now thats a HUGE difference! I know the last week or two before the A1c can reflect the most in the result (especially if having lots of highs or lows) but the results still don't make sense based on my meter readings. Oh well! It is what it is, but it drives me crazy when the finger poke A1c and lab draw are so far off!

The little things

For me, its the "little" things about Diabetes that add up to a tremendous melt down of my heart sometimes.

Last night I walked into Maddison's room without knocking, my bad. I was surprised to find that I startled her. I found that Maddi had just been secretly eating a "Fun dip" candy that she normally keeps stashed in her backpack for emergencies. -Sigh-

I just wanted to cry, right then and there.

So many reasons why!!!

I hated to see Maddison sneak candy...although I know it isnt unusual for a D kid to do so, and, we have been here before.

I hated to say anything to Madi about it, when I already know that she knows better... and I hated to think she would feel ashamed of herself.

Fuck this stupid disease.

Thats about all I could think at that moment!!!

Maddison told me right away that she had already planned to bolus for it.

All I could say was, "Well thats good, thats all I ask, but next time can't you just ask or at least check your blood sugar FIRST"?

She just looked at me totally ashamed. Exactly what I didnt want! D momma failure RIGHT HERE!!!

Of course I know WHY she didnt just ask to eat the candy. It was 9pm, we dont typically eat after 8pm in our house, and certainly not sweets. I dont usually allow "straight sugar" candy EVER, except for lows of course, or once in awhile if we are at a party or something. And, of course...she is a kid! Sometimes you just pretend you dont have Diabetes!!

Damn it.

I quickly had Madi check her number...378. WTF? Was it miscounted pizza from dinner? Was there still sugar on her hands?

Nope. Recheck verified the shitty number.

Madi corrected, and bolused 12c for the candy. The worst possible time to sneak straight sugar for sure, but I didnt say ANYTHING and I acted like it wasnt a big deal. (once isnt anyway is it!?)

I just wanted to run from her room as quick as I could. I wanted to spare her anymore talk about it, and just leave it at that. Im pretty sure thats the best way to handle these situations, right?

I climbed in bed with my eyes full of tears. Its so hard to know how to handle these situations!! I always feel like no matter what I do or say I'm wrong and ruining Madi for life! Whats even harder, is knowing and imagining how Madi feels about it.

And so, as I mentioned all this to the husband, my saddness and frustration started to brew inside.

Which also meant I wanted to vent.

So I did.

First the sadness poured out. The husband was great assuring me I handled it right.

But then my mental exhaustion kicked in....the anger, bitterness....FEAR.

I asked the husband WHY he leaves me 100% alone with Diabetes at night. WHY!!??

I have been asking Josh over and over (off and on) for the last 6 years to PLEASE IF ANYTHING just check on Maddison before he leaves for work at night. (Between 11pm and 2am) I just want him to back me up in case I have missed something with Madi. Even just wake me up if you have too!!

Maybe we forgot to check her sugar before bed. Maybe she was lowish and I set an alarm to re-check her number but slept through it. Maybe I missed my Midnight alarm. Maybe I forgot to set the alarm. Maybe, maybe, maybe!!! All I want is him to QUICK glance at her meter and see what her last number was!!! I want to know that he sees her last blood sugar before leaving for work, and I want to know he will act accordingly IF needed....thats ALL I ask!! Wake me up to take over if needed, but good god just look at the last number in her damn meter!!! It only takes a second!!!

He says he is always running late for work and thats why he never checks on Madi. Thats fucking ridiculous! Then he says (as if its wrong for me to ask) that he will have to wake up "early" to do so.

Im sorry...but....

I dont fucking understand!!???

There is no excuse. NONE. This is his child (that could DIE in her sleep) and all I ask is that he take 20 seconds to glance at her last number recorded in her meter to make SURE I havent missed anything. THATS ALL I ASK!!! DONT WALK OUT OF THE DAMN HOUSE WITHOUT MAKING SURE YOUR CHILD IS SAFE from Diabetes!!!

WHY is that too much to ask!!??

I have checked blood sugars all night every night since 2006. Sometimes I have to set alarms for an hour after I go to bed. Sometimes I cant/wont go to bed in fear I wont wake up to an alarm. Sometimes Im up chasing numbers every hour, every two hours....I just want SOMEONE to back me up!!

These "little" (not so little things) drive me crazy. They hurt my heart. My soul. I will never understand some things...and THIS is one of them.

*Disclaimer* My husband is great. My husband is an amazing Father. He just fails to give a shit in the middle of the night. I guess he really thinks I have it all under control. -Sigh-

"Dont Forget"

Its 10pm.

Maddi's blood sugar is 83 with .375 insulin still active from dinner.

She pops 8c of a protein bar in her mouth, exhausted. She lies down on her pillow closing her eyes, anxiously waiting to re-check her number in about 20 minutes or so.

She should be sleeping, not worrying about blood sugars.

"DONT FORGET to recheck me in about 20 minutes if Im asleep!" Maddi says...

Oh sweet Maddi.

I only wish I could "forget" about numbers at night. I only wish we could....

But we cant.

You can, and you should! Ive got this Maddi....


It hurts my heart that you worry before drifting off to sleep.

Can you imagine if Diabetes slept? Can you imagine how "easy" Diabetes would be if we didnt have to watch over crazy blood sugars through the night?

Can you imagine knowing that your child is healthier because all we have to manage is daytime numbers? A nice long streak of Diabetes SLEEPING when our child sleeps at night?

We can dream cant we?

The 6th grade transition this year has been tough, though Maddi won't admit it. I can see it in her tired eyes. She wants to nap every day after school. Homework. Studying. More homework. Projects. Peers....Diabetes.

Maddi's back to school blood sugars the first two weeks were great. Then came the highs I expected. Increase, increase, increase. Better. Increase, increase, increase.

We are now FINALLY seeing relief of continual too high out of range numbers, so Madi now feels low in the 90's. She is grumpy and feeling icky lately because of it.

Gaining back "control" of numbers means you will likely start to experience some lows. Which we have...so you back off a tad until you find the magic dose....We are almost there!!

For now.

Maddison has been doing an amazing job managing numbers on her own while at school, but she mentioned to me the other day that she wishes she didnt have to do this. She doesnt wanna do this Diabetes thing anymore, she said she is tired. I cant help but wonder if this is the tween/teen years talking. Diabetes is so hard for kids, but even harder for kids Maddi's age it seems.

My Maddi, who never complains about her Diabetes, mentioned she is tired of it all.

So am I Maddi, so am I.

Free

I believe in miracles.

I believed to the bottom of my heart and soul that the Schuhmacher family would beat the odds.

I have hoped and prayed with every ounce of my being for the last 6 months that this remarkable family be blessed with a miracle.

They simply had to!!!

Meri is an online "D" Mom, Dad is Ryan, and together they have been raising 4 amazing boys....3 of the Schuhmacher boys have Type 1 Diabetes. This in itself is remarkable!!

Meri has been the pillar of strength in the DOC (Diabetes online community) as long as I can remember. I have spent endless hours reading Meri's blogs over the years, and what has always struck me the most about Meri and Ryan is their outlook and perspective of living this crazy D life. (x's3!!)Meri has often guided me back to the right mental and spiritual path when I thought I'd likely lose my mind....

Back in February with a broken, heavy heart Meri and her dear Husband Ryan announced that he was facing reoccouring Metastatic Melanoma. In short, they needed a miracle.

I prayed endlessly.....

We ALL prayed endlessly.

All around the world, members of the Diabetes Online Community (and beyond!) worked together to comfort and support Meri and Ryan during a time that is/was simply devastating. This GIVE FORWARD page was established by caring friends and family of the Schumacher's to help provide financial assistance for the family while Ryan awaited his miracle...

But on September 2nd, Ryan Schuhmacher passed away. Sudden, and totally unexpected.

As Meri said, Ryan has received the miracle of being set free.

Set free from the physical pain and despair of fighting this terrible disease.

No more pain. No more suffering. Just FREE.

Please visit the Schuhmacher giving page to lend a helping hand to a family when they need support the most.

Thank you!!!

Day 3 of 3 and No Words

Today is day 3 of watching Maddi's numbers closely, the day I would be making adjustments *IF* she were still running crazy high. But she isnt. -SIGH-

Today is a different day, not the same as the pattern I've seen over the last 2 days. Well, actually its been about a week since numbers have been behaving...but like always, throw in a decent day here and there and you cant really follow the 3 day "time to make changes" rule now can you?

Maddi called me from school this morning just 2 hours after breakfast. 1.65units still working with a 94 blood sugar. She said she is sure she is dropping fast. UGH. As much as I REALLY wanted to tell her to take just 8c of quick sugar, I also had a nagging image in my mind of her going VERY low like she said she feels is about to happen. So, I had her double it up to 16c and asked her to recheck in 15. I never heard back from her.

I did ask her to call me back with her new number, but, she is at school. She is busy. She is between classes....I know she will do what she's gotta do based on the next finger poke....but my brain just doesnt stop the what if's.

What if she dropped REALLY low and hasnt called me back because the Nurse is dealing with Glucagon and calling the Paramedics?

What if she went back to class without re-checking? What if she sits pale, quiet and unable to help herself get more sugar without anyone noticing?

What if she is wandering around campus confused?

What if she only needed to "bump up" her number with 8c and now she is sitting too high until lunch? I'll be SO pissed if I made the wrong decision!

Day 3, the day I was sure I'd be increasing insulin across the board. Today is the same as yesterday. Same breakfast. Same activity level...but Diabetes doesnt care.
For whatever reason, today is different than the last 3 days. This is exactly why sometimes it takes SO LONG to get numbers "under control."

Damn Diabetes. Frustrated. Irritated....TIRED. Constant. Constant. Constant.

On another note, we moved last week! Packing, lifting, unpacking, cleaning, cleaning, and MORE cleaning! Zooming around non-stop in the AZ heat....I dont think I saw a blood sugar over 90 for an entire week!! 30's, 40's and 50's were haunting me, even despite my reduced basal rate, no bolus for food consumed and drinking G2 continually. My whole body still aches!! Some nights I was afraid to go to sleep because I feared not waking up. Even worse, I missed several of Maddison's night checks out of shear exhaustion and not hearing my alarm. As I rushed into Maddison's room those mornings, I was pleading in my mind "please be ok" over and over as my heart pounded in fear of finding her low, sick from being in DKA, or finding her dead in bed.

No words can really describe how you feel in those moments as you rush into your childs room knowing you missed a blood sugar check!!

FINDING her SAFE and ALIVE is all that mattered. I would spend the day SO angry at myself for missing her night check, yet so grateful she was ok.

Day 3 of 3 today, not sure what tomorrow brings. And then, the Blue Candles appear on Facebook this morning. Blue candles represent a life taken too soon from Diabetes.

This time, a seven year old boy who has been living with Diabetes since the age of 2. My heart aches for this family. Tears fill my eyes, a lump in my throat, and again, my heart is pounding. There are just no words.

This could have been us. This could BE us.

There are just no words.

Only silence....

Alone

Maddison started 6th grade yesterday, which at our school means she now has a home room and 3 different teachers. YIKES. Big responsiblity, alot of change, and with this also comes my decision to FINALLY have Maddison managing her Diabetes within the classroom. No more going to the school Nurse, unless troubleshooting is needed.

My heart is suddenly very, very sad.

Sad that Maddison has the extra responsibilty of such a major disease, especially now when so many added responsibilities are emerging.

12 is such a hard age. Socially, emotionally....and then there is Diabetes.

I'm sad that Maddison may feel "different" while surrounded by the watchful eyes of her peers with every finger poke and BEEP from the meter or insulin pump within the classroom.

Sad that the time has come to turn Diabetes over to her, leaving her "alone" with this stupid disease.

Long overdue? Perhaps. Its so hard to let go, especially letting go of Diabetes.

Letting go all depends on the child, and Mom knowing when the time is right. Diabetes is something that you never want to hand over, while at the same time preparing for it has been in the works for years. Suddenly one day you realize its time to step back, and all you are left with is hope that Diabetes will be tended to the way it was within your own care. Its an overwhelming responsibility sometimes.

This is a huge milestone. This is very different from all the years Maddison has been managing her Diabetes under a watchful eye. This is Maddison OWNING it ALL DAY LONG. Owning it.

My heart feels alone FOR her.

Its time for my little birdie to fly. Bittersweet, and heart breaking all at the same time.

Avoiding

I have purposely been avoiding the Endocrinologist. For Maddison its been nearly 6 months since her last appointment, and I havent had one for almost a year!! There, I said it!! Now I feel less guilty for some reason :)

Why on earth would I avoid our FABULOUS Endo? Well, because hearing our A1c does nothing but make me question my efforts and abilities to tame this beast. Im never "happy" with the number. (even when my own A1c was 6.5% for over 2 years I still wanted it back down to 6.2%!!!) I always think that our A1c's are either too high, or too low....so, for now Im deciding to schedule appointments less often. Im stepping back from the "report card" because I honestly don't need (another) number making me feel like Im never good enough. (Im already hard enough on myself!!) For now Im choosing to let Diabetes be a more of a "nothing" in our life, instead of an "everything." Im choosing to stop worrying about that ONE number, and will instead keep focus on ALL the numbers and what I need to adjust to fix them. Does this even make sense?

Did Maddison's last A1c reflect that my efforts in managing Diabetes had been lacking? No, not at all. Maddi's A1c was simply a reflection of insulin needs increasing all over the place, and me not being able to keep up, while also trying to keep her safe from lows. I know that in my mind, but somehow that stupid A1c makes us crazy anyway.

I should mention that Maddison's last A1c was her highest EVER (still in the "recommended" range) so perhaps that has alot to do with my mindset of avoiding appointments for my mental health.....but you see, the problem with an A1c is that it doesnt necessarily reflect effort or knowledge. Seeing an A1c result also isn't going to change ANYTHING I'm doing, because Im constantly TRYING to micromanage numbers anyway. It seems by the time we are in for the appointment Ive already made the "suggested" insulin dose changes anyway, so I end up being irritated that they "suggest" anything because at that point Im just waiting to see results!

Truth is, an A1c is only going to make me FEEL like a failure. I dont need to feel that way and I dont need to hear the A1c result to know what needs to be done. I can see it in the numbers every single day! Sometimes I think this whole micro-managing thing is just too much, in SO many different ways.

Maddison may have recently had her highest A1c's ever, but I still logged EVERYTHING daily. I still woke up chasing numbers every 1-3 hours overnight most nights, and we still checked blood sugars every 2-3 hours during the day. I still made changes to insulin dosing as often as I safely could, yet she still had the highest numbers EVER. What more could I have done? That stupid A1c hurt my heart.

Because it wasnt reflective of how I THOUGHT we were doing.

Because it wasnt reflective of the overwhelming amount of time I spent looking over logs and making changes.

Because it wasnt reflective of anything I wasn't already adjusting every chance I could!!

So, Im stepping back. Do you REALLY need an Endo appt every 3 months? Do you REALLY need an A1c drawn that often? What does that result change if your efforts and knowledge arent changing? Exactly.... NOTHING. For me it changes nothing but how I feel about myself and this disease. Im avoiding the A1c's for awhile from here on out, but dont let that confuse you, Im still putting every same bit of effort into managing this damned disease!

My A1c? Well, thats another story. Ive been lazy with my carb counting that used to be "perfected" with each morsel consumed, and Ive been lazy with eating too much crap. Ive been lazy without workouts (does walking the dogs count?) and Ive been lazy without making basal changes where Im pretty sure they should be made. Why? Because sometimes we get lazy, and sometimes doing "good enough" is all that you have to give. -Sigh-

Two higher A1c's than I want, both for very different reasons. Over the years Ive learned its not as much about the number, as it is about your honest effort and mental health. So for now, Im avoiding that silly A1c check for both of us, because to me, it really is more harm than good!