Running away

On Friday night we we packed up last minute to run away from the craziness of everyday life. We have been meaning to escape on a mini family vacation to visit the snow up north for weeks and weeks, but with a husband that works 60 hours a week that includes Saturdays its hard to find the time. Over the years I've learned that planned trips aren't always the best trips, and sometimes you just gotta get up and go!! Thanks to our very special friend BETH (whose family we have loved and cherished since a local D family get together in 2007) we were able to grab the keys to her beautiful family cabin and escape up in the tranquil mountains of Strawberry Arizona and enjoy some much needed family time.

On Saturday afternoon we hiked miles through the snow, only stopping here and there for the girls to try out different little hills while eagerly searching for the perfect giant slope for sledding. The air was crisp, the snow was gleaming, and the trees whistled from the breeze of pure clean air. Nothing to think about but each other. Enjoying the moment, relishing in the beauty of our surroundings, and loving each moment. Life these days needs more of these moments. For everyone. Everywhere.

I must say, as much as I hope to make Diabetes invisible every day, I try even harder to do so on vacations like these. I dont want to have to stop for lows, and I dont want to stop and poke fingers more than I have to. For me its easy, Im mostly predictable and I know that I need to keep snacking in order to avoid lows. Walking miles through the freezing snow is much like walking through the hot sand. Its a workout indeed! I realized just how out of shape I have gotten, and Im not happy! My blood sugar was 83 after snacking (without bolus) on whatever the heck I thought I needed over those hours in the snow, but with a temp basal reduction and apparently too many snacks for Maddison, she ended up at 263 which meant she was feeling extremely drained and unable to go on towards the end. Stupid Diabetes. I assumed all the hiking and cold weather would cause Maddison to have lows, but apparently I over carbed her this time. Oh well. A small correction dose was given and she was down in rage quickly. We didnt check our blood sugar for many hours that day while pretending Diabetes didnt exist on our snow day, and thats all that matters. We ran away from Diabetes (kind of?) and sometimes thats ok. So for now Im ready to continue being a Diabetes warrior. A much needed break for a few hours is all I needed.

Diabetes has been playing me wrong these days. Ive been overwhelmed with the TWEEN years,especially after Maddison having
multiple pump site failures in the last week with high ketones over night, and her wild hormones robbing me of more sleep than usual these days. The reality of this disease has been causing me a lot of heartache lately, and the financial aspects of our medical insurance in 2013 has gone even more to shit. The outlook of medical care in this country is scary, especially for the future of our children!

Ive personally been having a lot of scary low blood sugars and Im simply feeling a bit defeated. Im often waking up low between 3 and 6am, so low (30's) that sometimes I can hardly find the physical strength to hold the juice box to my lips. With a husband that works nights, it leaves me feeling very alone and vulnerable. Im working on tracking these numbers, but not seeing a pattern. So for now I run myself higher I guess. On the list of my January blues is also the fact that January 2010 is when my Dad passed away after an unspeakable battle of post surgical complications. I think of my Dad and his struggles with Diabetes and Dialysis often when Maddison's numbers are bonkers. Its terrible to go there, I know. January always leaves me feeling a bit heavy hearted I guess, I miss my Dad. I miss my kids having my Dad in their lives. But, we talk often about all the good memories, so that's the positive note! And now, as of Thursday January 31st and a long over due trip to the Dermatologist, my Husband has been diagnosed with skin cancer. A Squamous Cell Carcinoma.

Exactly why we ran away.

I wasnt at the appointment with my Husband, but the Doctor told him he is 99% certain the spot he removed for biopsy is "not the type that spreads" although it is indeed cancer. He also froze a small spot on his nose, but he did not feel the need to send it along for biopsy. I disagree, and can already tell you I will be making an appointment elsewhere for a second opinion. We are supposed to hear the biospy results for typing sometime this week.

Upon hearing this information from my husband (while I was at work on Thursday!!!) my heart began to palpitate. Time stood still, and I felt an overwhelming sense of panic. I think in the last 3 days I have gone through every emotion. Fear, despair to denial, to pure faith...and have now ended up numb. As it should be I guess. No point in making myself sick with worry right now. Hope, faith and prayer. Its where we are at.

34 and PMS

A few weeks ago Maddison was running high, high, high. It used to be that "high" was 200-250's for Maddison, but nowadays the threshold of "high" has changed since the TWEEN years are here. 280's-380's is now not uncommon for high spells. GASP!!!

After 2-3 days of high patterns I get on those numbers!! I start by increasing basals around the clock, and if that doesnt work in 2 days or so, I also adjust the ratios with MORE added basal power. Right now Maddison is at 80% more insulin per day than she was a few weeks ago!! Logging. Tracking. Studying. I used to be able to "flip flop" between 2 different basal settings in her pump. One for "normal" and one for "high spells" so everything would fall into place with just a simple pattern change set in the pump memory. Not so much anymore! I tell you this Diabetes and hormone resistance is some scary stuff!!

JUST when I find the right changes to Maddison's insulin doses she will have a week or two (rarely 3) of near "perfection" with numbers....and then it suddenly changes. That "perfect" week of numbers has passed us by yet again.....

As of yesterday.

143 before PE and 54 after. Of course, I blamed PE for "causing" the low, although I was starting to question if it was about time her insulin needs (basal rate mostly) were dropping again.

Stupid me, I didnt know today was a PE day again. If I did, I could have suggested Maddi have a small snack JUST IN CASE. But, Im too late. 151 before PE was great(no IOB)but before class was over the nurse was called to rush over to the gym for my dear, sweet child who was fading fast. BS = 34

Mom FAIL.

GUILT.

Guilt is a HUGE manifestation of this disease. Even if we know better than to place blame.

I could beat myself up over "inflicting" this low on my poor kid, or I can blow it off and sit down with the numbers tonight.

I have to choose the numbers. Just sit down with the numbers and fix it!! Stop feeling guilty!!! Because, I know better. Because I have to. Because we ALWAYS pick ourselves back up and shrug off the guilt for our own best interest. I believe Diabetes is a 50/50% mental disease, SERIOUSLY!!!

Do you know what I suspect? Maybe this is too much information....but, I suspect Maddison's hormone levels are following her older Sisters menstrual cycle. YEP. Add another variable to the blood sugar drama of a growing girl! (she hasnt actually "started yet") Ive been aware of this reality for years now, but lately its becoming a very clear picture!! The older Sisters PMS was some CRAZINESS over the weekend, then "the day" came, and.....BOOM! Maddison started with the LOWS. Very interesting indeed.

Lucky me, I had surgery to end mine back in 2010 and let me tell you, I dont have the same highs and lows each month like I used to! Once that PMS would start my blood sugars would be bonkers. Much higher than normal. Unpredictable. Then as soon as the "time came" my blood sugars would drop like a rock. Out of no where. Usually while I was sleeping. Today with this crazy low I am reminded that any month now my poor sweet little girl will be CLOSER to more of a woman. Nooooooo!!!!Im feeling a bit traumatized actually!

UGH. Bring it on PMS, I figured you out once for myself, and I will just have to figure you out again. -Sigh-

IOB, not so NICE and randoms

IOB, or Insulin on board is the amount of insulin you still have working to bring down your blood sugar. Tonight at bedtime Maddison needed a correction dose. She was 210 but entered 280 into her pump. She was simply careless I guess. For some reason tonight I decided to look over her pump history for the second time....I usually do every night as she sleeps...but I already did earlier in the day, so it was just by chance that I caught this error of her entry just an hour after she fell asleep.

SCARY.

What if that tiny extra amount of insulin were to cause a low? A low that she would never wake up from? It COULD happen. It does happen. And sometimes, it happens without explanation. But could you imagine if you were the parent that made a mistake? Or the parent that missed your childs mistake? Its simply unfathomable.

So, I just set a temp reduction to Maddi's basals to balance things out. We shall see what the next hour brings. Tonight this little mishap reminds me of just how careful we ALWAYS need to be. Parents NEED to be the watchful eye, esecially while independance flourishes. Always. No matter what. Insulin pumps make our lives so much easier, in so many ways....yet they can be dangerous when not closely monitored. So for those that question why we still need to watch over our child's Diabetes management, this is why.


This morning I left for work after giving Maddison yet another correction dose for a high blood sugar. Dad was home with the girls today. Maddi knows to check her blood sugar before eating breakfast. Dad reminded her. She told him she would check....but overlooking her pump history today I see that she didnt. Why? Because, without constant reminding it seems most D kids just dont want to poke their fingers. They just dont. Even though they know they NEED to. Dad should have verified that she checked. But, he didnt.

-Sigh-

I text Maddison from work at Noon for her blood sugar number. She was 398. Dad said she "forgot" to bolus an extra 15c he suggested at breakfast. Of course.

At 5pm when I got home from work I asked Maddison when she checked last. It was at Noon. She corrected the 398, but never rechecked a few hours later and never ate lunch. She KNOWS to recheck a crazy high two hours later, but without my constant "reminding" she sometimes fails to be responsible. Even Dad failed to be responsible and ask her where her numbers stood. This is typical. He leaves the responsibility to her.

I play this game on my own. 24/7/365

While Maddison will face a consequence for not doing what she needs to be doing....Dad just shrugs it off and places the "blame" on her. Something is incredibly fucked up there if you ask me. Yes, Im bitter. I have every right to be. Ive discussed this with HIM until Im blue in the face, and broken at heart. And nothing ever changes. I dont understand why.

These days Maddison is quite resistant to insulin. What used to be a total daily dose of around 18-20 units a day is now around 40 units a day. Hormones. Puberty. Growing. This girl of mine is growing like a weed. Diabetes is becoming something it never was before. It isnt "fun" or talked about by Maddison anymore. It just IS. Just there. Ignored mostly. Exactly what most tweens/teens with Diabetes want most in their life. Normalcy. Its a great thing actually, when Maddi is being responsible that is. While most days she is very responsible, the days she struggles or "forgets" are the hardest for me.

I dont blog much anymore. There isnt much to say. Nothing is surprising anymore. We have ups, downs and everything in between. Mostly, I just dont want to talk about it anymore, and I cant seem to find the words even if I do! Often while I am awake waiting on blood sugars at night I will type out a post, only to delete it when Im done. Just venting to myself I guess.

We have been doing GREAT actually, even though this post seems otherwise! I started on the Omnipod back in December, and simply said, I miss my Medtronic Pump dearly! But, insurance issues win and with the Pod I am forced to stay whether I like it or not.

Time to check Maddi. 162. I'm 135. I'll set the alarm for 3hours from now. Lather, rinse, repeat.

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!!!