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.

Halloween 2011

I remember the first Halloween we had after Diabetes came into our lives, (2006) it was crazy stressful, even though Maddison had been dx'd 10 months prior. I remember my biggest stress was managing blood sugars while Maddison zoomed around the neighborhood after having eaten Pizza for dinner. Its so sad how simple things like pizza and zooming around made me stress myself to tears so often back then. I'll NEVER forget the early days with Diabetes. EVER. I'll remember those emotions until the day I die. -Sigh-

I honestly never thought I would get to this "comfort" place we have found in our "new normal" lives. Of course we still have days where LOWS freak me out, like Saturday when Maddison called me from a friends house with a BS of 34. THIRTY FOUR!!! Is that number crashing or staying? Lows when Maddi is away from me ALWAYS freak me out a bit (or alot in this case) And sometimes ketones make me want to cry...but overall, Diabetes is a non issue and pretty well behaved. Tonight Im confident will be no different!!

((KNOCK KNOCK, KNOCK ON WOOD!!!!))

Time brings knowledge. Experience. Comfort. Nowadays we just do it. Bolus it, SWAG it, correct it, check it, bolus it. Bolus it. Bolus it. Move on.

Ok, maybe there will be ALOT more bolusing going on tonight, but chances are the affects of zooming through the streets to the next candy house will keep blood sugars on the lower side anyway. Tonight Maddison will eat too much candy like everyone else. I probably will too. Then each day after Halloween we get a yummy candy treat for awhile. I sort all the pure sugar treats and keep them for lows only. Then candy starts to secretly disappear without the kids even noticing! (evil laugh) Besides the fact that I WILL keep some of my favorites for myself, I'll also take some to work. Those ladies at work will eat anything! I throw ALOT away. Freeze some. Maybe send some to the troops over seas......Halloween is just another day with Diabetes, until bedtime comes of course! I expect to be up often tonight checking Maddisons sugar thanks to the combination of chocolate and her running wild in the streets, OH well!! Just another day in the life! Happy Halloween!!

38

Randomly over the past week Ive been waking up in the high 250's, which for me just doesn't happen. (lucky, I know) Then I began to wonder if maybe Ive been going low overnight, then rebounding thanks to Mr Liver. Which again, doesn't happen for me. (can you say denial?) Things are changing for my Diabetes over here. Im not liking what Im seeing. The "easy" Diabetes I used to manage, is no more. Now I have to actually do some logging and use some serious brain power to figure things out. Whether it be progression of the disease, or changing hormones from my Hysterectomy, stress, weather....I dont know. But it needs to be figured out. Quickly.

Ive taken note lately that Ive been having some night time scary feelings while sleeping....

The first one was about a week ago, I have no idea the time because I never actually got out of bed. I was still asleep, or half asleep, and kept telling myself I was low and I needed to wake up and get sugar NOW! But I didn't. Or, maybe I just couldn't. I remember my mind chanting to me..."you are low Kelly" "get up and test Kelly" over and over and over.

I never checked myself. I can recall several nights this same scenario happened. Im not sure why....I have still been checking Maddison at Midnightish and 3amish just like I always do (still half asleep) so why didn't I ever check myself? Am I really THAT asleep while I carry on the night time checking routine for Maddi?

So last night I slapped on the CGM and what do I see this morning when I review my recorded numbers?

1am blood sugar of 38

2am blood sugar of 58

3am blood sugar of 124

4am blood sugar of 170

5am blood sugar of 232

6am blood sugar of 268

All I can say is, they need to make these alarms louder! I never woke up when I hit the 38, but I'm eternally thankful MR Liver stepped in. Starting out my day with a seizure would have SUCKED. A coma would have F'ed up my mind FOREVER and dying from Diabetes would have RUINED my family. Screw you Diabetes.

Although Im shocked and irritated the CGM didnt wake me up for this low, Im thankful I have the technology. Thank goodness I put on the CGM last night, for I may have never believed this was happening with my sugars overnight. Now I have a starting point of where to make adjustments. Sometimes you have to SEE it to believe it. 38 can = 268. Who would have thought?

Caught Up

Two weeks ago hot flashes finally caught up with me! Damn surgical menopause. I really thought I'd be one of the lucky ones that gets off easy without needing estrogen replacement for unbearable symptoms. -sigh- Wishful thinking!

I guess I shouldn't complain since I haven't had any menopausal feelings sooner. It's already been over two months since my surgery! The hot flashes came on so suddenly one day that I thought I was sick. I didn't even realize at the time that I was having hot flashes! If you have never experienced a hormonal hot flash, let me tell ya, they are NOT exaggerating when they say they can become disruptive to your life! These hot flashes feel like a high fever. My face suddenly gets hot (like when you open the oven!) and then the heat travels down my neck leaving me drenched in sweat. No joke! By the time my entire body feels on fire, the chills decide to take over. Let's just say I look like a weirdo out in public, and I'm not sleeping well at night! It's crazy! I thought women who complain of hot flashes were just whiners....HA! It really is THAT bad!

I had no choice but to start the hormone patch. The first few days brought headaches, crazy blood sugars and laziness. I have now made it through the first week and I'm finally starting to feel better, I can sleep without waking up in a pool of sweat! But....my blood sugars SUCK, partly because I'd like to just eat all day. I think Ive already gained 5pounds this week! Stupid hormones. Right after surgery my insulin needs dropped dramatically, even with the infection and PE I developed......but now? This estrogen patch is kicking my ass with 300's here, there and everywhere. I'm increasing insulin across the board and it ain't budging! I'm supposed to manage Maddisons numbers through her teen years!? Ack!

It's a vicious cycle. High makes me tired. Makes me grumpy. Unmotivated. Headachy. Irritable. Lazy. At this point I don't know if the high blood sugars are making me a mess or if the patch dose just isn't right! Damn menopause has caught up with me!

On the other hand, I've been having blood draws every 10 days since my PE to check my INR. FINALLY after 8 weeks of adjusting my Coumadin doses they have me where I need to be. Apparently Coumadin is another medication that is strongly influenced by EVERYTHING. What you eat, stress, sleep, exercise, hormones.....sound familiar? Like I really needed ANOTHER crazy ass medication to manage. Sheesh! Im feeling a little irritated with my own body today, can you tell?

On the bright side, Maddisons numbers haven't required logging or changes for many, many weeks now. Diabetes has been our friend. But, this week Maddi is starting with some lows before lunch, so im sure logging and tweaking is right around the corner. Cooler weather is coming ya know......even though it was 96 degrees today, I'm begging for cooler days ahead, even if it means blood sugars may go bonkers for awhile!

My Hannah has been caught up playing for both the JV and Varsity teams at school, loving every minute of it. Last week she came down with strep AGAIN, just like she does several times when school starts each year. I think her immune system weakens when she has weekend tournaments along with weekday games, homework and practice every night. She is just steps away from having those dang tonsils removed....each time she recovers slower. In fact, She felt so sick this time around that she asked me to check her blood sugar. 114. Fasting.
No comment. Which reminds me of her last a1c when she tested for Mono last year.....5.5%.....technically considered "borderline." Again, no comment.....

I just can't get caught up in all that. So, we don't. We just keep swimming. Just keep swimming.......