It just AINT that easy

From Chasing Numbers

I wish I could just send Maddison off on summer "play dates" without a second thought. Do you still call it a "play date" at the age of 12? Almost 12 I should say, in August Maddison will be 12!!! Im having some issues accepting that. Really, I am. It isnt her age so much as it is the Diabetes independance....its the not knowing for sure whether or not she is taking care of herself the way she SHOULD be when she is on her own. Is she just "winging it" as she tries to "fit in" with the other kids and keep Diabetes efforts to a minimum? I often worry of low blood sugars striking her down before she can help herself, because I know at this age kids want to pretend Diabetes isn't there, even if it means putting off treating a low blood sugar until you have to. This growing age of independance means Im often overwhelmed with just how much "work" Diabetes is for our children.....

Normal "play dates" aren't the concern, Maddison manages those all the time. The concern is SUMMER playdates. Summer in AZ means swimming. Swimming and Diabetes is a TON of work with an insulin pump!! Unfortunetly our insulin pumps are not "water proof" like some other insulin pumps are, but even if they were "waterproof" I dont think we would choose to swim with it attached. Hello, can't we be pump free to bathe AND swim? Who wants a big 'ole insulin pump hanging from your swim suit for everyone to stare at anyway? And what about the insulin going bad poolside when the temps in AZ are always over 100? Ya...no thanks.

The problem with swimming and Diabetes/pumping is that #1 when you take your insulin pump off you aren't getting ANY insulin into your body. You need insulin for "energy" (and LIFE) so we must reattach the pump every hour or so to give a quick dose of the missed "basal" insulin to keep Maddison's body using the glucose it needs to function. If you dont reattached the pump for insulin you will get very sick, VERY fast and have some very high blood sugars as your body is starved of the energy it needs. Insulin is not just taken for food, it is needed to keep your body and organs alive!! Now of course just reattaching the pump every hour during swimming isnt a big deal and isnt difficult to do...what makes Diabetes and swimming tricky is that you also need glucose going INTO the body (carbs) for energy. We cant exactly just jump in the pool without a plan!

Maddison keeps gatorade by her side for swimming, this way she can drink a bit here and there without taking an insulin bolus for a snack. We have learned the hard way that active insulin from a meal or snack during swimming means insulin is TURBO CHARGED working extremely fast and erratically to bring blood sugars down, which is extremely dangerous especially in the water! (Working muscles suck up the glucose QUICKLY!!) Even if we give just a small fraction of insulin for what is eaten during swimming it seems we end up fighting off some serious lows. Its such a balance....a balance that sometimes doesn't make any sense! This might be summer vacation, but there is never a vacation from managing your Diabetes. Summer for us, just might be the WORST time of year with Diabetes needing SO much extra attention!

So, Im stressed. Its one thing for me to be observing Maddison while she swims so I know just how much or how little swimming she is actually doing....but what about when she is away with friends? Last year Maddison managed a few VERY short (1-2hr) swim dates at her friends house without me spying.....but what about this year when she spends the enitre day? I cant exactly follow her around anymore at this age, and I dont want to either. She knows the importance of reattaching the pump each hour. She knows to triple treat any lows while swimming. She can add and dose for carb counts on packages.....she knows these things...she is capable, mostly responsible....but.....its just not that easy!

Snacks and meals poolside? Not such a problem when I myself have observed every little detail and can make an educated guess, but Jeezus! We have been transitioning Maddison to her own Diabetes management for years. Knowledge doesnt just come over night and it SURELY doesnt come easily. This disease isnt a science and it doesnt follow any rules. This is all trial and error based around past experiences and outcomes in which I have logged into my Mother Pancreas Brain for YEARS. I dont want my kid to end up sick (or worse) from a low or high blood sugar just because she trying to be a kid. Maddison can text me her activity level, food, expected length of time swimming, last dose of insulin.....but there is ALOT of information I need to know to guide her through. She NEEDS me (the mother pancreas) to direct her in what she should be doing during swim time to stay SAFE, not just "in range" so she cant just be tossing insulin into her system without me instructing her. I HAVE TO KNOW that she is reattaching her pump to dose the missed basal insulin or she is at risk of DKA.....This is all alot to be concerned about!!! ALOT!! It just aint that easy to send off your D kid on a swimming adventure!!

Soon enough I know I will get the call........

"Can I sleep over Mom?" WTF? After all that swimming? Lord help me! Im not even sure that would be safe!! A night check after swimming is ALWAYS needed. ALWAYS!!! Not even a snack or basal decrease before bed is a promise to ward off the post activity lows....what if her site falls off in the middle of the night from all that time in the water? I REALLY dont want to ask a parent to check my Diabetic child at night, and, Im not so sure I would even trust them to do so after a day of crazy swimming. Its just not that easy! Its just not that easy, but somehow we HAVE TO make this independance work.

I was a much better Pancreas Mom when I could keep Maddison by my side. This independance is freaking me out. Stressing me out. Seriously, making me cry. It is so much for ANYONE to manage, especially a newly gaining independance child at the age of 12. Mistakes will be made. There will be lows, and there will be highs...alot of them...but swimming and Diabetes needs to be SAFE.

I think I would like a giant bubble right about now. Or, maybe we should run off to the secluded mountains? Maybe I can scare away all Maddison's friends? Maybe I can just say NO to every invite?

Ya, right. I can pretend cant I?

It just isnt that easy. I wish people understood. Im NOT a crazy overprotective Mom. My child really DOES need all this extra supervision right now, and NO it isnt because she has never been taught to manage her disease....It just isnt that easy.

The Numbers

I've still been chasing numbers, but it isn't the highs anymore, now it is the Summer lows. Impending lows that is. We have been catching lows before they happen thanks to a quick blood sugar check 2hrs PP. Adjusting from school Diabetes to Summer Diabetes is always tricky those first days!

Summer means Maddison's insulin needs decrease tremendously, and it hasn't even yet been due to the increasing activity levels....its simply because the "stress" of school days are behind us for awhile. No more sitting at a desk all day. Hooray!!

It amazes me every Summer to see Maddison's basal rates decrease in the mornings. What was .55 per hour is down to .40 literally overnight, and ratio's that were set at 8.5 are on the way back up to 13. So far that is, she is still in need of decreases across the board. AMAZING! If every A1c could be measured in the summer we would be looking pretty darn good!

Maddison has been doing awesome caring for her Diabetes while I am away at work. She calls me with her 2hr PP number and I call her back for the 3 PP number. We are just a week and a half into summer but so far those frequent checks have been a ton of information to reduce insulin doses and keep low blood sugars away. Maddison stays home with Hannah while Im at work and luckily either Dad or I am home 2-3 times a week so they aren't crazy bored all summer.

Hannah stays busy babysitting her cousins a couple times a week and sand volleyball in between. As always, Maddison has a summer volunteering schedule. Besides the normal volunteering with the Bird rescue and the Small animal rescue Maddison and I will be speaking at a few classes for the Arizona Humane Society's summer camp for kids! We have been asked to represent the Small animal rescue and will be educating the kids about caring for small critters as pets! FUN! Maddison can't wait! Maddison and I are also leading the 2012 "Bowl-a-Rama" fundraiser for the shelter which takes place in August. Dont forget Diabetes Camp AZDA is June 9th to the 16th!! For just the second year Maddison will be away for an entire week at camp!!! I miss her already!! Her suitcase is currently sitting in the middle of the living room because she decided she couldn't fight her excitement any longer and she started packing last week!

Hooray for SUMMER!!!

May Days

Last week I FINALLY got Maddison's too high post breakfast numbers down! For two glorious days Maddison's numbers were p-e-r-f-e-c-t. PERFECT!! Call me a weirdo (or just totally and completely RELEAVED)) but I seriously had tears in my eyes when Maddison's number card came home from the school Nurse each day showing those beautiful blood sugars. Really, I did have tears in my eyes, I DID! I was just THAT mentally drained and DONE seeing those highs! I was SO happy to FINALLY see healthy, safe numbers....I FINALLY got it JUST right after over 8 weeks chasing numbers!

Ohhhh two glorious days!

70-140 all day, and all night. For two perfect days. 12 finger pokes. Not one low. Not one high. Hallelujah! I even managed to squeeze in 5 straight hours of sleep Thursday night because Ive had Maddison's bedtime numbers kicked into shape (FINALLY) for a couple weeks now and my super happy brain (still feeling in victory mode) said I could take ONE night off without too much worry! Its amazing how refreshing 5 straight hours of sleep is :) Maddison went to bed that night at a safe 142 and 5 hours later her meter flashed a 136. Kickin Diabetes down, one night at a time :)

So, just two days you say? Ummmmm ya. Well, what goes up must come down right? Problem is, when seeing progress in defeating high blood sugars you are likely to encounter some lows. Its all about balance ya know. Adjust this down a tad...adjust this up a tad. Change this. Change that. Now its time to back off the aggressive dosing and be cautious I guess. On the third day Maddison had early release from school so I watched the new and improved lower numbers closely! I caught several "potential lows" thanks to that WONDERFUL insulin pump feature called IOB. (insulin on board, or active insulin) I was able to give Madi a couple extra carbs here and there to stop impending low blood sugars in their tracks....LOVE THAT!

Day four was a lowish day with a couple numbers in the high 60's and 70's, but it was also the weekend which means I SHOULD HAVE turned basal rates down on Maddi's pump because she isnt sitting at a desk all day like she is during the school week. That was my mistake #1. Shoulda turned down the basal dosing for the weekend!

Day 5 almost killed me (physically AND emotionally) and had Maddison begging for me to take her to the Emergency room in fear that her blood sugar wasn't going to go back up.

FUCK.

Thats where Mistake #2 came in. I still hadn't turned down basals. On a Sunday. Why? I forgot. I was hoping numbers would "level out?" I'm an idiot? Probably all of the above.

Maddison had been complaining of a sore throat for a couple days, and its seems her numbers always run lower before getting sick. (Mistake #3!!) We made the usual big Sunday breakfast so carb counting wasnt (shouldnt have been) too far off. By now Madi was complaining about her throat pain continually, and I could hear in her voice she had a head cold coming on. I had just gone to lay back down in bed because I wasn't feeling so great myself, and I had just fallen asleep when suddenly Maddison was standing beside my bed crying. She said she felt like she was going to puke....... 1.5 hours after breakfast and Maddison's blood sugar was 32. THIRTY FREAKING TWO with over 2 units of insulin still working! Because Maddison had startled me out of my sleep I was even more super-over-reactive to seeing that crazy low number. Maddison refused to drink juice, and refused to chew the jelly beans I was trying to stuff in her mouth. I called out for Josh to prepare me 10u of Glucagon, while Maddison just cried and cried. Her eyes looked glazed over, and she was slow to respond. She was pale white and sweaty, surely she was dropping fast. I was certain she was about to have a seizure.....

Long story short, Maddison agreed to pour two packets of "Fun dip" sugar in her mouth to avoid the need for Glucagon. The longest moments in the world seem to be when you are waiting for a scary low blood sugar to rise.....My heart was POUNDING. I was slowly becoming numbish. I then realized that I too, was low.

My meter flashed a 42. My insulin pump said I still had over 2 units of insulin still active.

NICE.

Sugar for me. More sugar for her. And more. And more. And more. An hour later (with blood sugar rebounds) we were both so damn tired all we could do was sleep. So we did, holding each other tight. SAFE.

Today I dialed back Maddison's insulin dosing, afraid of more lows.....Maddison was 299 after breakfast. Thats Diabetes for ya. Grrrrrrrrrrr......

Just two weeks of school left. That means EVERYTHING is soon to change. Routine, bedtime, meal times, activity level.......

INSULIN NEEDS.

Just when you get it all figured out, it changes.

These are the days of our lives, the REAL life of living with Type 1 Diabetes. X's two in our house.

Chatter

When Im feeling defeated by Diabetes, the voices in my head seem to explode into a constant whirlwind of chatter. I end up unable to focus, totally scatter brained!! Drained. Overwhelmed. Feeling hopeless and helpless. Every hour leaves me looking at the clock, wondering what Maddison’s blood sugar is doing now. Is it time to check? Its been two hours since breakfast, we better get that 2hr PP number... OH, now its been 3 hours since she ate last, we better check again! So much for Diabetes being a non-issue these days. Did I really say that awhile back?

The chatter is endless. As soon as my eyes open to start the day, the questioning begins...

"Will today’s blood sugars fall into place? Did I make the right changes for today? Will today be the day I end up angry and in tears with frustration taking over? What the hell am I doing wrong? What am I missing? I ask myself over and over again why I feel the need to blame myself for every shitty blood sugar. I try and tell myself it isnt me....I am not a failure like Diabetes wants me to believe! I wonder to myself why I can't just find peace with the numbers and feel that I’m doing everything I possibly can to get these high blood sugars down. I’m playing by the “rules” and doing everything I can, so WTF is going on!!??"

Chatter, chatter, chatter.

Changes, changes. Every week Im STILL making insulin changes for Maddison, only to see a day or two of improvement. We might see some in range numbers here and there, but blood sugars slowly creep up as the week moves on. How can that possibly happen when you increase, increase, increase doses? It seems the more insulin I give, the more insulin Diabetes demands! Maddison's insulin doses are DOUBLED from what they were back in February, and every week its still going higher and higher! Im increasing EVERYTHING every 2-4 days!! Is this unheard of? We are stuck in the 200's a large part of the mornings after breakfast (ratio was 1:12 and is now 1:8) with only some relief from highs here and there. C-R-A-Z-Y!!!! Sometimes we get a good morning but a high afternoon, sometimes she sits perfect all night and then the next day is C-R-A-Z-Y!!!

I’m feeling defeated, all the way to the depths of my soul. Entirely. Completely.

The last time I didn’t have to log numbers and make near constant changes was back in February. FEBRUARY!!!!!!!!!!!!!!!!!

Maddison has grown 2 inches and gained 5lbs, WITH a two shoe size increase over the last several months....but I don’t care. I don’t want to use that as an “excuse” for these shitty numbers. I don’t want to just say Diabetes can "win" because she is growing so much and the insulin need/resistance has set in approaching the teen years. I don’t want to wait for things to “settle” and I don’t want to admit that sometimes Diabetes just IS this way. I dont. I cant.

The chatter is getting louder and louder inside my SWELLY brain.

The chatter is chanting....”ask the Endo for help Kelly, maybe you need to swallow your pride and admit that sometimes you need a fresh set of eyes.” You don’t have to do this alone Kelly....they are there to help you!"

Just when I was about to ask the Endo for help figuring out these numbers last week I made a change that brought 2 glorious days of perfect numbers! I was all proud and refreshed, feeling confident and so much relief that I was sure Diabetes would never drag me down again!!

But then the bad site came on Saturday.

Of course.

A 382 blood sugar overnight with high ketones. Maddi’s numbers have been back to “bad” ever since. WHY does that happen!!??

Even through most rough patches of fighting lows or highs the chatter in my brain usually stays optimistic, and my inner cheerleader comes out. “You are doing GREAT Kelly, you have done everything JUST right!” You are an amazing Pancreas, you always give 110%. You will get there, keep at it, don’t give up, you are checking every two hours and making such progress! You are an awesome Mom, You have fought, fought, fought! The Endo would be impressed! Its JUST a number Kelly, keep kicking those numbers down! Time will tell, tomorrow will be a better day! This isn’t going to last forever! She is a TWEEN Kelly, you knew these days would come! It will be ok, it will be ok, it will be ok....You are on it! You’ve got this! It isn’t YOU Kelly, it is the Diabetes! You ARE capable! She is a growing child, she will be fine! Keep smiling, you are stronger than you know! Remember, one day at a time. Last week was so much better than the week before, you are sooo close! Don’t back off, stay aggressive! "If people only knew what *I/we* put into managing Diabetes every-single-day they would think we are Super woman! "Take a step back and just watch, you are always trying your best!"

Most days I love that inner cheerleader, she keeps me sane.

But then one day I just can't take another high number on that meter screen!

Some days Im mentally EXHAUSTED.

This is when the mean and angry chatter begins to chant inside my FRUSTRATED mind..."I can’t do this myself, but how the fuck can the Endo help? This is some crazy shit! They don’t see what I see, they cant have any good suggestions. They don’t see the all the variables I have to consider each and every day, all the ENDO sees are numbers without details! They think they know everything! They think Im clueless! They think Im the worst parent. They don’t see Maddison’s mood that can influence blood sugars, they don’t see the stress on any given day, the food, the activity, the site on day 4, the insulin effectiveness decline on day 3, the different nutritional balance of foods, the wrong carb count, that STUPID class party with 150c of pure sugary shit! How do THEY know what I need to do? How do they know the bizzillion things Ive tried!!?? Ive been doing this for 6 yrs, Im pretty sure Im the expert! Forget them, they dont live this life! IM TIRED!! Screw you stupid alarm clock! I cant do this anymore, Im gonna go postal! I think I need to hide. I think I need that whole bottle of wine. Where is that bridge anyway? Wipe that stupid smile off your face lady at Starbucks, why are you always so friggin happy anyway? Sun, sun, go away. I need to hide today. I must be an idiot. 400? Why do I keep fucking this up? Damn it, what am I? The worst mother in the world? Am I retarded? Im useless as a Diabetes Mom. Im too fucking tired to understand any of this shit that’s going on. All these damn numbers don’t make any sense. What did I do to deserve this torture? Am I a horrible person? WHY do we lead this life? What kind of sick joke is this?" Im so irritable and angry with everything, I dont even like myself!

And THAT my friends, is the censored version of the angry chatter in my mind.

Often, the chatter of blame sets in...."Maddison must be sneaking food, there is just no way these numbers can be right. It must be bad insulin. There must be an air bubble in the tubing. Her long shower with the pump off every night has got to be screwing up her basal dose. It’s a bad site. Shit, it must be a whole bad box of sites! It’s the changing weather, damn its hot outside! Its stress at school. Is she being bullied? Im a sucky carb counter. She must have cancer or some crazy disease making Diabetes freak out!! OMG!!! I think the pump is broken. I guess we have to change her site every two days instead of three? Her arms must have scar tissue. Her butt is too chubby. Her stomach site kinked the cannula. Nope, I must just be clueless. HORMONES!! Its just the hormones! Damn you hormones. It must be me. I really am a total failure to my child.....Is this for real?"

Chatter, chatter, chatter. Diabetes is more of a mental drain than anything. These voices inside my head just won't quit until I get these numbers down. I dont do it to myself. Diabetes INVADES!!! Diabetes invades my mind, my heart, and my soul during these chaotic times. It just does. This isnt chatter I can just turn off, because this is my child!! My child that I am supposed to keep HEALTHY from this fucked up disease...

Every morning I wake up optimistic, certain that any changes I made the night before will surely bring resolve to this blood sugar chaos....I stay optimistic, because I HAVE TO. Today, I'm hanging on the edge, these numbers are just as high as yesterday. How can that possibly be?

Chatter, chatter, chatter. I'm so tired of the chatter!!!!