Building

Fatigue. Overwhelming fatigue. Irritability. Body aches. Headaches. Worry. Yawning. Heavy, burning eyes. Lack of concentration. Triple size coffee. Can’t think straight. Collapsing on the couch after work. Ignoring household chores. Shut down. Numbers, numbers everywhere. Blood sugar checks every two hours at night. Its been a rough spell for awhile now.

Its been building.

Stress.

Physically, mentally.

Maddison's night time numbers just wont cooperate, despite my best efforts.

Keeping the balance.

Not too high, not too low. Can't make changes too fast, in fear of causing lows.

You'd think blood sugars would be more difficult to manage during the day with so many more variables to consider.

For Maddi,they aren't.

Daytime numbers are the easiest for me to manage, because there isn't the same FEAR that night time brings.

The fear that I won't wake up to check basal changes recently made. The fear I wont hear the alarm clock and I'll wake up to a seizing child. Or worse...

I never used to have this fear of managing Maddison's numbers at night. I'm bordering paranoia these days. Ive been waiting months for this feeling to pass, yet somehow it is still there. WHY?

I have been awaken by my own scary lows lately. Maybe that's why. Last night I was 32and unable to get myself out of bed for juice. I didn't have the strength. I was confused. Josh was laid over out of town for work, and I was alone. I fell back to sleep for awhile. I'm not sure how long. I eventually, literally, rolled out of bed and made it to the kitchen where I devoured a bazillion carbs without even comprehending. Hunger took over. Thankfully my body took charge and woke me up, violently shaking, hunger forcing me to eat. By now my BS was 54.

I remember walking back to bed and looking at the clock. 230AM. I planned to just lay there in bed and wait for the life to come back to me so I could check Maddison's blood sugar, but instead I fell asleep. Physically drained. I woke up 4 hours later, panicked, because I never re-checked Maddison and I never rechecked my low, which means I also didnt give myself insulin to cover the extra carbs I consumed while freakishly scarfing down any food I could find. NICE.

My BS = 378. Maddi was 264.

FUCK. Seriously? I swore tonight would be the night I'd see progress with Maddi's insulin resistance. The basal changes, ISF change AND correction I made for Maddison earlier that night didn't budge her number. AGAIN. I'm guessing by the time I get changes right for these highs, she will likely be back normal and the changes made will cause LOWS. F U Diabetes.

I'm making changes every 2 days....which have turned into WEEKS.

-Sigh-

Fatigue. Overwhelming fatigue. Irritability. Muscle aches. Headaches. Worry. Yawning. Heavy, burning eyes. Lack of concentration. Triple size coffee. Can’t think straight. Collapsing on the couch after work. Ignoring household chores. Shut down. Numbers, numbers everywhere.

Its been building.

Stress.

Stress of being a Pancreas 24/7/365.

Stress of Maddi's climbing numbers during the night.

Her numbers are great during the day....

Its night time that's tough.

Brutal. To my heart, to her future.

Its been building. Burn out. Which brings guilt.

Guilt that says I suck. I suck at trying to manage my child's blood sugar, even though I know its just Diabetes that SUCKS.

Its been building. Anger. Worry. Defeat.

Midnight. 2am, 4am and 6am.

I know numbers will eventually settle, but what I want most is defeat.

And sleep.

More importantly, a healthy child. Free of future complications.

So, Midnight, 2am, 4am and 6am is here to stay until this crazy spell decides to leave. At least daytime numbers are good, right? My mind says yes, my heart says no....my heart wants it all. For her. For her health. For her future.

JDRF Promise Ball 2012

Last night we were once again honored to attend the 12th annual JDRF Promise Ball. Of course we were only attending as Volunteers, but thats exactly what Maddison loves most about it! This was our 6th year attending, and by far the most exciting.(except our first year when 2 of our puppies brought in $9K in the live auction!!


This year’s black-tie gala featured special guest and celebrity honoree Brett Michaels, best known as member of the glamrock group “Poison.” I must say Brett is a totally down to earth guy, and all in this for the children! Brett was himself dx'd at the age of 6, over 40 years ago. Brett's daughter "Raine" was diagnosed at the age of 9 back in 2010 while he was filming the hit reality show "Celebrity Apprentice" with Donald Trump. "Raine" designed and auctioned off an awesome Pink and black guitar at the live auction last night, it brought in $14,000 with 100% of the proceeds going directly to research, thanks to JDRF!!

Maddison spent the night zooming around with her T1 BFF "Bee" from over at my dear friend Kris' blog. Our two silly, beautiful, energetic and giggly girls seemed to own the place last night. Their first assignment for the night was greeting Gala guests as they arrived. Yep, all they had to do was flash their beautiful smiles and light up the night! You could see their energy inspire all the guests as they were welcomed by two amazing girls, proud to represent those living with Type 1 Diabetes. BEAUTIFUL!!!

Maddison and I spent most of the night beside the stage watching the entire program with a group of other kid volunteers. The program was heart warming and motivating indeed! These JDRF moments always pull at my heart strings and get the chills pulsating through my body. Every word seems to hit with so much more magnitude when spoken through the Microphone in front of a large audience. There is no hiding from the emotions then, thats for sure! My heart was instantly turned to mush when the speakers turned their talk of fundraising into mention of Diabetes complications and children dying in their sleep from low blood sugars. OUCH. Talk about hearing the room grow silent! I was totally caught off guard. I dont remember JDRF being so quick to mention the whole "dying in their sleep" thing at their fundraising events. SHEESH. I just wanted to yank out the power to the Microphone and spare the children's little ears of such horror! I really hope this doesnt send our children to bed fearful at night.....luckily the children surrounding me were so busy being silly that Im not sure they were actually listening to the program. Each child was anxiously awaiting their turn to cross the stage with a gift in hand for each JDRF honorable mention of the night. So cute! These kids all LOVE the stage!

A very unique Family of mention this year....the "White" family. I tell you, I dont even know how these parents kept their composure as they told their story on stage! Several years ago TWO of their boys were diagnosed on the SAME DAY after being rushed to the hospital nearing DKA. TWO!!! AT THE SAME TIME!!!! Just over a year later their daughter was also diagnosed at the age of 4. -Sigh- What an amazing family!

After the program we were fortunate to have been given a VIP pass to visit Brett Micheals. The kids all loved the pictures and autographs, but mostly they enjoyed the gigantic bowl of Jelly Beans Brett Micheals gave when he heard that they were much needed for some low blood sugars next door. Too funny! I guess everywhere Brett goes he requests a bowl of Jelly Belly's in case of low blood sugars. YUM! The perfect low treatment for sure!!!!


Over the past 11 years the Promise Ball has brought in over 14.6 MILLION dollars for funding Diabetes research. I can't wait to hear what this years total will add to that amount. Dollar by dollar. Day by day. Maddison loves advocating. She loves telling our story. She loves fundraising, and she believes in a cure....isn't that all that matters? Thank you to JDRF for making this journey with Diabetes something FUN, and thank you for continuing to inspire us, motivate us and support us!

Two Years Free

Two years ago today my Dad was taken off life support.

I never thought I could move past the anger in my heart for what he endured those last weeks before we made this decision.

I never thought I would forget what it was like watching him slowly succumb to his disease over the years.

I never thought my heart would heal from the sorrow, emptiness and pain I felt losing him....

Somehow, broken hearts can mend.

Today I remember most that Dad passed away peacefully. Within minutes. With family surrounding him. He left behind a life of constant pain and illness. In those few moments of his passing, my heart was also set free.

No more seeing his pain, and watching him suffer.

He was freed.
No more complications from surgery.
No more heart disease.
No more Diabetes.
No more Neuropathy.
No more Dialysis.
No more back pain.
No more blindness.
Simply, no more. Just-Like-That.

Peaceful.

Two years.

Two years FREE.

It seems an eternity since I've heard my Dads contagious laughter, yet it still echos in my mind. I think of him every day as I tend to my garden, for it was him that taught me the love and joy in doing so. Watching my garden grow keeps him close in my heart.

He is with me in my weakest moments, especially those times I struggle managing Diabetes for both Maddison and I. Thinking of him moves me past the emotional struggles, and keeps me focused on not letting the hard times get me down. He is on my mind with every word I speak towards Diabetes advocacy....and with me everytime low blood sugars turn scary. Thinking of him carries me through.

It is strange how your heart can miss someone so much, yet be at peace all the same.

Eternal memories.
Eternal love.
Eternal peace.

David Lee Mckim
10/20/1945 to 1/20/2009

From DAD

From DAD

Her smile

From CHRISTMAS2010

On this day 5 years ago I climbed into Maddison's ER bed and held her tight. I wanted to run away and allow myself to cry all the tears that were causing tremendous pain in my heart. I wondered why I waited so long to see the truth. I had been questioning Maddison's health for nearly an entire year at that point. To this day, I still dont know why or how I could have waited so long. I feel guilt to this day. But, everyone told me I was crazy. I just couldn't bring myself to poke her finger, revealing our new reality, even though I knew in my heart what was happening inside her tiny body.

5 years ago today. ...with too skinny little arms, and dark circles under her eyes Maddison still smiled while fighting back tears as the Nurses and Doctor worked around her. Maddison already knew what Diabetes meant, for I was diagnosed myself just 9 months earlier. Problem is, Maddison also knew that Grandpa was living a life of multiple complications from his Diabetes. At the tender age of six Maddison already knew all too well what hospitals were like, for we often spent endless hours bedside while Grandpa was in and out of the hospital over the years. Looking back now I probably said alot of things about Diabetes and Grandpas reality of health that I wish I never said. I never then imagined that Diabetes would be in her future.

Still knowing the realities, Maddison was able to smile through her fear. She cried of course....But for the most part, Maddi still tossed around smiles to the Nurses and hospital staff despite feeling so sick, scared and heart broken. Its all in her smile.

To this day Maddi's smile still lights up our lives,and insulin makes every day possible. Without it, Maddison would have already succumbed to the disease. Insulin isnt a cure, but it is a blessing.

We are at a point in life that Diabetes isn't a big deal anymore. Lows aren't as scary, and highs don't eat up my heart on a daily basis anymore. We have our days, for sure. Diabetes still hurts sometimes. Alot of times. But it isnt like it used to be. It isn't all consuming. It isn't as scary. Definitely, not nearly as scary.

All because of her smile. She is happy. Healthy. Thriving. Strong. Proud. We CAN do this. We CAN. Even on the scariest days, we know in our hearts we will be ok.

Happy 5 years to my Maddison.....its been a long road. We have cried, screamed, rejoiced, prayed, stayed hopeful, strong and determined. Most importantly, we have accepted and found peace in our lives knowing we CAN do this, and we are amazing despite Diabetes trying to kick us down. A happy 5th year, for sure.

Maddison and I both have our 3 month Endo appointments next week....surprisingly so far (knock on wood) Maddison hasn't hit the crazy highs and random numbers like she (and everyone else) usually does just before the "report card" time rolls around. The last couple weeks/days reflect most on the A1c, so this time Im REALLY hoping/expecting to see an A1c that I feel truly reflects how the last 3 months have been with blood sugars. Maddison has had a pretty good 3 months of numbers even with back to school this year, which is very surprising. Adjust here, and adjust there.....numbers have just kinda fallen into place without causing me too much brain pain! Well, during the day that is....

Nigh time is another story....

Two nights Maddi will be a tad high. One night perfect. Another high night. Two good nights. One low night. Three high nights.....all I can do is watch. You can't change anything with that kind of pattern!! 1 in 20? Ummm.....yeah. Thanks alot for that JDRF. While I do appreciate them telling it like it is, that 1 in 20 scares the HELL out of me. I didnt need this reminder of our reality x's 2...really, I didnt.

So, I'm TOTALLY guilty of running Maddison (and myself) a little bit higher at night since this "ad" was released. I feel terribly guilty for doing so. But, Id rather feel terribly guilty for awhile than to freak out every night and not be able to sleep while I obsessively check to see if Maddison is breathing. Yes, this fear shall pass. In time. 1 in 20 is some seriously scary shit!

Me? Ummmm.....Im pretty sure this will be my highest A1c EVER. (Ive said this many times before) Ive gotten lazy. Im burned out. I just "don't care" so much. Im only checking my sugar about 4-5 times a day right now, instead of every 3 hours like I used to. I'm not sure if I'm adjusting to life without my Ovaries or what, but I'm feeling and looking pretty GROSS. I look like HELL. I like to blame my hormone patches for my weight gain (8lbs!!) but lord knows all I want to do is eat CRAP and pretend my Diabetes doesn't exist. I feel low at 90 and I see 250's every day. There used to be a time when I never saw a number over 150. Lately Im happy with a 180. I'm too irritated by low blood sugars to make any changes for highs, so I just leave everything the way it is, even though I know changes need to be made. These damn hormone patches are hard to figure out! So, I do nothing. Im totally ashamed actually. Maybe I need a "bad" report card this time to kick my ass into gear. I hate being this careless and lazy. So why don't I just do what I need to be doing!!?? Keeping my own body functioning, healthy, and alive is catching up to me! Im TIRED of thinking about numbers every hour of every day. Im TIRED of stopping what Im doing for low blood sugars. Im TIRED of site changes. Finger pokes. I'm TIRED of being so "perfect" all the time managing numbers and I just want to pretend I can do less of all this crap and still be ok.

Sometimes less is good if it gives you a mental break. Im sure my A1c will give me the swift kick in the ass that I need right now. Thats even better.

2011 JDRF Walk

"Maddison's Mutts on a Mission" exceeded our fundraising goal!

Blame the Diabetes!

This morning Maddison was grumpy!! Grumpier than usual, I should say. Maddison isnt a morning person, "unless I wake up by myself WITHOUT an alarm clock!!" -Sigh- I don’t know if it was the high blood sugars all night (TWEEN!) or just waking up on the wrong side of the bed this morning, but I’d like to blame the Diabetes. Im just in a “blame Diabetes” kinda mood right now, and here are some of the reasons why....

#1 My pump ran out of insulin last night, and never alarmed. So, I woke up too high in the 240 range. Thirsty as all hell. Headachy. Achy and TIRED! I could blame myself for running out of insulin, but Id rather blame the pump for not alarming!

So, I then changed my pump site to my tummy (which I have only used a few times in all these years) and it hurt like a Bitch. That’s reason #2 to blame Diabetes for everything today! It made me grumpy! This site change was of course BEFORE I had my morning coffee, which means Im not only irritable because of high blood sugars but also highly irritable because my brain NEEDS coffee immediately upon waking....especially after chasing Maddi’s highs all night!! Stoopid Diabetes pump sites!

#3 Because Im using some nice new territory with this fresh pump site, Ive been chasing lows all day. Stoopid absorption changes! Lows all day, while at work. Even suckier than when you are just at home! At work I need to be focused! Im trying to calculate numbers from insurance payments and such, but I literally couldn’t add
2 + 2 today. I stared at the computer screen. Blankly. I had a lot of work to do, but Diabetes didn’t care. I was forced to put on my medical science hat and decide how to decrease my insulin dosing while wearing this tummy site for the next 3 days, or continue to run too low. Basals? Bolus? Or both? Stoopid Diabetes!

#4 I had enough test strips for the day....for a NORMAL day. Today wasn't normal. I was low, low, low and used all the test strips I had left! Which meant by the end of the day I was left GUESSING just how low I was. Blame the Diabetes. Or, the pump site!

Reason #5. Its 11am and my cell phone rings. Its Maddison’s school. By now Im saying the F word out loud while chasing my lows at work, and I don’t even care who hears me!

I was first thinking Maddison had a bad low blood sugar and the Nurse was calling to let me know. Maddison has been low a lot lately, so she isn’t feeling low anymore until she is VERY low...(hence the 34 over the weekend)

But instead of the Nurse calling to report a crazy low, a recorded message plays:

“Your child Maddison L is reported as absent today, November 3rd.
“Please call the attendance office to verify”

WTF? I dropped off Maddison with many minutes to spare this morning, as usual. She should have been there in plenty of time before attendance was taken.

My heart palpitates...

My still lowish brain is being super dramatic, and even down right unreasonable at this point. I call the school, while worrying that Maddison somehow wandered off campus with a low blood sugar before the morning bell rang. Maybe she is passed out in the bathroom? Maybe she was low and couldn’t make it to the nurse!? Maybe her highs overnight have turned into DKA and she is in a coma somewhere!! Maybe she ditched school and walked to the park nearby? After all, she IS a school “hater.” It seems Maddison will just never understand why any child should “sit at a desk all day to learn nothing and be bored when real life teaches you more.” –Sigh-

I mean really...my mind was convincing me of all kinds of crazy shit! But still, you never know with this fucked up disease, and when you are a worried Mom with a lowish blood sugar brain on top of that...your thought process is CRAZY!!

I called the school office....

The receptionist verified with Maddison’s Teacher while I was on hold that she was NOT there. Maddison was NOT in class for morning attendance, and she is not there NOW!!!! Did I mention it is now 11am and I dropped Maddison off 3 hours ago!!??

I am about to vomit. WTF do you mean she isn’t there!!??

My blood sugars are lowish, and I cant even fully comprehend what this crazy chick just told me. All I could think was "what kind of fucked up trick is this?" Yes, my lowish brain actually said that OUTLOUD!!! Maddison is NOT in class. Maddison is NOT in class. Maddison is NOT in class...

I just hung up. I didn’t know what else to do. I called the school nurse...

The first thing I said to her was...

Is Maddison there?

“No” said the Nurse.

That’s all I heard.

At that point, my lowish brain shut down and didn’t understand because it was too busy freaking out to listen any further....

In my mind the Nurse was just mumbling at this point.

I explained to the Nurse about the phone call I got from the attendance line....

My brain was blank.

“NO”.....what do you mean NO Maddison isn’t there?

And then I finally came to and realized she was telling me Maddison WAS NOT THERE now, but was a few minutes ago. She didn’t mean that NO Maddison wasn’t there TODAY.

Its crazy that my mind just stopped at NO....

HOLY SHIT, She IS THERE!!!!!???

Of course she is!!!!

Talk about confusion!!!

I blame the Diabetes. I was low. I was worried. I couldn’t process what anyone was REALLY saying. –Sigh-

Apparently Maddison went straight to the nurses office upon arriving at school today. She had a headache. She laid down for about 20 minutes, which caused the teacher to mark her absent. When the receptionist called to ask if Maddison was in class, the teacher said no because she wasn’t in class RIGHT NOW......

What that damn receptionist SHOULD HAVE ASKED THE TEACHER was if Maddison had been in class at all TODAY.

JEEEEZUS!!! All this heart attack for nothing!

I say, its Blame the Diabetes day.