For Shamae

In loving memory

When words cease to come
When your heart simply says it isn't so
When nothing you can say will make it better, kneel and pray.

Many years ago I started this blog as a place to vent and cry my tears, at a time in my life where I couldn't see much but darkness surrounding me. My blog became a place of comfort and security, a place I could release endless emotions while learning to live this new crazy life as a Mom to a young child with Diabetes. Little did I know at the time, I was about to be taken in under the wings of other Moms just like me. They were out there, and they were listening. Understanding. Reaching out. Commenting. Encouraging. Inspiring. Offering endless support.

It was here on my blog that Shamae reached out to me. Shamae's own Daughter was diagnosed with Diabetes at the age of 4, just a short time after Maddison's diagnosis. Although I was never lucky enough to meet Shamae in person, it always felt as though we had been lifetime friends from the start. Here we were, just two Moms living the life of "same same" and chatting away as online friends, while watching each others children grow through the years. Witness to each others triumphs and struggles along the bumpy road, Shamae was my angel in disguise. Her kind words always seemed to mend my broken heart, and she had the ability to overcome (with a smile) anything that came her way.

Over the weekend we received the shocking news that Shamae passed away in her sleep. Suddenly, and unexpected. She was just 30 years old. Shamae leaves behind three beautiful Daughters and her Husband of many years. Its unbelievable. Devastating. Unreal.

Shamae's insight and outlook on life is something I will always remember and cherish. Shamae was always a shining example of pure faith, hope and determination. I could never thank her enough for helping to pull me out from my post diagnosis darkness, just by simply being a friend. Shamae's husband and children were the center of her world, and her love for them was absolute. Through all life's hard times and what sometimes seemed to be endless struggles, Shamae still smiled. She always came out on top. She was one hell of a fighter for sure. Shamae was a fierce advocate for her Daughter, and perhaps one of the best advocates for ALL our children that there ever will be. Determined, strong, devoted. I have no doubts, Shamae was truly an angel, sent here for great purpose. I think she has served that purpose well and beyond, more than anyone will ever know. She has touched so many lives, just by being who she is, and being a great friend to many....even if just through a computer screen. Shamae has certainly earned her wings.

Shamae was an even better Mother, and a beautiful devoted wife. I often found myself in awe over her CRAZY HAPPY LIFE! Happiness just seeps from her little girls smiles, showing just how great of a Mom she really was.

There are no words to describe the sorrow I feel in my heart, for her babies. For her husband, her family. Shamae's beautiful life was taken too soon, for reasons no one could ever truly understand.

Shamae, I will cherish our online friendship for eternity. We will do our best to fulfill your dreams, and see to it that your sweet Sydney gets her cure one day.....

Love always,
Kelly

Summer, School and TIRED!!

The Summer months, (as always) provided a time to be more relaxed about blood sugars, and apparently my tired brain decided to also take a break from middle of the night blood sugar checks way too often this Summer!! Nothing is more scary and frustrating than not waking up to an alarm clock when you NEED to. How can you not wake up to multiple set alarms!!?? I just dont understand it!! As a result, Maddison spent much of the Summer simply running too high overnight, which means I felt terribly guilty all Summer long! Thank goodness Summer has ended and School is back in session! It makes managing blood sugars so much easier overall, and, there is nothing like a good old routine to see what is REALLY happening in Diabetes land!

So, Im proud to say that Maddison did fairly well (without supervision) this Summer managing her Diabetes. There was no school Nurse to make sure she was checking her sugars when she should be, no school Nurse to verify carbs counted, and no school nurse to make sure she didn't over treat lows. Yes, my Maddi did pretty darn well most days!! While she did run much higher than usual for most of the Summer, (laziness, growing and eating all day long!!) the important thing for me was that she was expected to be more independent in her Diabetes decision making. At her age, it naturally just kinda falls in to place, just the way I think it SHOULD BE for our kids. Pushing kids too fast, too soon towards Diabetes self care (I hear) can have terrible consequences. As with anything Diabetes related, there is no right or wrong way. This is just what works for US! Maddi could text or call me at anytime while I was at work....but my goal of the Summer was to stay (FAR!)in the background of Diabetes care while Maddison took the lead. Im happy to say we survived without me having to nag too much!! (Though she may say otherwise!)

As with most Diabetic kids her age, there were many, many days when Maddison just didn't check her blood sugars as often as I expected her to. We personally shoot for checking sugars every 3 hours, unless things are VERY predictable, then Maddi would only be expected to check before meals and at bedtime (with Mom checking at Midnight and 3am) but how often does Diabetes remain THAT predictable? Not for long! But when it does, it saves us alot of finger pokes and test strips! I think kids "forgetting" to check their sugar is fairly "normal" for this age isn't it? Throughout the Summer there were days that Maddi got the lectures of Diabetes care, TV time taken away, and a nagging Mom by text message and such....but at the end of the day when reviewing her numbers Id always say, "AS LONG AS YOU BOLUS FOR EVERYTHING YOU EAT" then I am happy. And by reviewing her pump history, this kid likely didn't miss a bolus! Some days she was bolusing 10 times a day!! (Im sure she enjoyed not having Mom there to say "you don't need to eat another serving size"!) Maddi ate all day long it seemed, and according to her 3 inch growth spurt over the Summer, she may have needed the extra serving size! In my opinion, not bolusing very carefully for every carb consumed is where you will REALLY screw up your A1c and your health. So not checking your sugar once in a while? Well, Ill pick and choose my battles on that one! Im just happy she never skips a bolus at this age!

So, poor poor me, I'm back to being overly TIRED since school started back in August. Falling asleep at my desk, falling asleep after dinner....TIRED!! School in our house means I'm strictly back to waking up every 2-3 hours so I can get blood sugars tamed once again. I love the school year now that my kids are older! There isn't any late night eating to interfere with basal rates. No odd sleeping patterns to throw off the logic of what needs to be adjusted where. No swimming, no nightly sleepovers....just a nice routine. Just how I like it. It makes managing numbers so much easier! After just one month back in school we were right back to where we need to be! The "predictable" and much lower blood sugar range! All my lack of sleep (and endless daytime insulin adjustments) for school have paid off immensely, just in time to see the Endo in 2weeks.

But, overly tired now means that checking blood sugars every 2-3 hours (or more often) is catching up with me. BIG TIME. Since Sunday I am starting to over sleep my night time alarms again! The alarms on my cell phone look like this....

1200am
1203am
1206am
1210am

DIDNT WAKE UP!!

330am
333am
336am

DIDNT WAKE UP!!

630am
633am
635am

DIDNT WAKE UP!!!

7am....Well SHIT. Now I missed my morning walk!!!

Damn it. I guess I need a break from chasing numbers! Tonight my goal is to sleep at least a straight 4 hours! Lets hope Diabetes will allow, and I didn't just Jinx myself.

CrAzY 2013 so far, and second opinions!

A quick re-cap of the 8 months hiatus from my blog, its been a very emotional and challenging year to say the least! (this post might get ridiculously long)

In February my husband was dx'd with skin cancer. Initially the Dermatologist called it a Squamous Cell Carcinoma, which caused a major freak out on my part. Although when detected early, Squamous Cell Carcinomas "rarely" metastasize, it was still very scary to be dealing with the "C" word at all. Talk about a slap in the face, and a HUGE reminder of appreciating your health, life, and loved ones every single moment of every single day! After going through Mohs micrographic surgery, it just so turned out that the biopsy revealed it was "just" a Basal Cell Carcinoma, which is a much less serious cancer than the original assumption. With Mohs surgery, each layer of cancer containing skin is progressively removed and examined until only cancer-free tissue remains. We are skin cancer free!!

In March my Mom was really struggling with her health. Just not feeling well, also related to a very stressful situation in her life. One night she had several symptoms of a stroke, and ended up calling the paramedics. I showed up at her house within minutes, to find her already on oxygen and with paramedics questioning if she had ever had a panic attack.
WHAT? Seriously? That was her "diagnosis" according to them. But, we didn't feel comfortable with that, so we drove to the ER. It didn't take long for them to find that her potassium level was dangerously low. She spent 2 days in the hospital, and has been good since! ALWAYS trust your gut, and get a second opinion if you feel the need!!!

Also in March my Hannah began to struggle even more with her depression. She had quit playing competitive Volleyball earlier last year, and there was an obvious downward spiral since then. (I have struggled with depression since I was her age, please know it is a medical diagnosis!) Hannah didn't really mesh with her counselor (its hard to find good ones these days!)and one depression medication caused a rash so it had to be changed. The next one made her feel like a zombie, and one (presumably) caused her to black out. She fell and split her chin open requiring a couple stitches, which caused ME to question what the hell we are doing trying ant-depressants on a child!!??? Finally the next trial medication pushed her over the edge. She spent 6 days in the hospital. This is where *I* went downhill, mourning for my child. For her emotional struggles. The stress, unknowns, the side effects and fear of not treating the depression vs treating it WITH medications. Nothing could ever explain the feelings involved as a parent when your child hurts and there is nothing you can do to make it better. Especially when the cause is major depressive disorder, a chemical imbalance in the brain!! It has been an endless battle since then. Still to this day we haven't found a medication that is what SHE needs to get back on track. As a matter of fact, tonight she starts a new medication, and Im scared to death....yet hopeful. Medications are NOT always the answer, they are a small part of the puzzle. I feel guilty if we continue trying to find the right med, and I feel guilty if we quit trying. So, please don't judge!! This one last "trial" medication could be the missing link, or it could worsen symptoms. If it isn't for us, we are back at square one.

In April my husband lost his job, again. For the second time in just a few years. Not only can job loss be devastating financially, but when you MUST HAVE medical insurance, COBRA payments of $1200 a month on top of losing income is NOT GOOD. We are still recovering, having finally made our last COBRA payment in August! THANK GOODNESS!!!!

In May I started to feel quite yucky! It became a struggle to even make it through the day without needing a nap. Id nearly fall asleep all day long at work, and I'd sleep a few hours after work each day. All my labs were normal except my hormones were a bit off balance, but that's the life after hysterectomy I suppose! I was suffering from debilitating fatigue, muscle aches, mouth sores, flu like symptoms, major low back pain, tingling, eye pain, numbness. WEIRDNESS! My sugars had been running much higher too, but, I blamed it on stress, depression and hormones. I spent most of the summer months on the couch after work each day, just feeling like YUCK. What a waste of living!!

In June, Josh's Aunt was diagnosed with Glioblastoma, the most aggressive, deadly and malignant of all brain tumors. Prognosis is typically 3-15 months. So not fair when you are only in your 50's!!! A very long story short, Chemo and radiation after surgery left debilitating loss of speech, coordination, confusion etc. Another trip to the ER just a few weeks ago found the tumor was growing. She was transferred to Hospice care, but after a few days family decided to seek a second opinion to try and beat this damn cancer and enter a research study as a last resort. The second opinion said the tumor did in fact, NOT GROW.....it was just the brain swelling that caused the tumor to look larger. WHaaaaattttttt!!?? Need I say it again? ALWAYS GET A SECOND OPINION!!!!!!! So, last week during the pre-testing before entering research studies, they found DVT's in Auntie's legs, and then also in her lungs. Do you see how a second opinion actually may saved her from dying of a PE, likely a complication from the Cancer treatments? SECOND OPINIONS!!!! Right now Auntie is stabilized and doing amazing well considering!! Every day the brain is recovering from the radiation and swelling. Her speech, confusion, and coordination has majorly improved to near normal!!! It is still a long road ahead of uncertainties, but making every day count is what matters most right now!

In August I developed swollen lymph nodes and a "relapse" of even crazier symptoms! Many Neurological symptoms including facial numbness, left arm heaviness, left leg heaviness, chest pain, zapping sensations etc caused me to undergo 2 brain MRI's. No Multiple Sclerosis or Neurological diagnosis thank goodness!(Except my PCP thinks I have health anxiety, what a jerk) Abdominal pains required a CT scan, nothing there either. Doppler studies were all clear, and endless lab work says I'm not likely to be experiencing anything like Lupus or Fibromyalgia. (eye dryness, burning, light sensitivity!!) My PCP seems to believe I have some autoimmune disease causing all this nonsense. As of about 2 weeks ago I am FINALLY not having nearly as many crazy symptoms and Im feeling much better!!! I am still waiting to see a Rheumatologist to figure out my growing lymph nodes!!

So that's about it. All these mentions of my crazy year....what IS "NORMAL" life anyway? I guess this just is, isn't it?

Peers and PE

So the drama with peers in 7th grade? Ohhhh my. Well, it goes something like this....

(According to Maddi)

"I dont think you should be eating that." (3 lifesavers before PE)

"What is that on your arm?" (pump site, Maddi says she has heard this about a "billion" times this year and GIRLS continually whisper and stare)

"You can run more for your Diabetes ya know"

"No wonder you have Diabetes" (Life savers before PE!)

"I'll never have THAT problem"

"Why are you just sitting there when YOU are the one that needs to be running more than us?" (during a blood sugar low)

"Just go!" ( A girl running behind Maddison in PE (physically pushing her) when she suddenly felt low and needed to test)


Damn these 7th graders! I dont know if all these questions and comments suddenly arise from the fact that 4 schools have come together to form one middle school, or if 7th graders really just have no sensor? Teen lack of acceptance for differences? Are they more flooded with media misinformation than the younger grades? Where are the parents that raise their kids to be understanding/caring and supportive of those around them? I seriously don't understand!!!

These kinds of comments from peers are the exact reason why Diabetes in the teen years is so damn difficult and down right emotionally challenging to manage. Who would want to whip out their meter and check a low blood sugar when everyone is staring and gawking over you? People (especially teens!) don't understand that a low blood sugar cant wait. They don't understand that you may suddenly be paralyzed by weakness and shaky legs, unable to continue in PE. What they see is Maddison popping lifesavers or little candy hearts (still left over from Valentines day!) and sitting out of class many times a week. They dont understand why. It seems to Maddison that they see Diabetes as a weakness. They judge. They nag. They whisper. They stare. They even say she uses it as an excuse to sit out of class.

If only Maddison knew how much stronger Diabetes has made her. Physically, emotionally, deep down to her soul....if only the judgements of others didn't hurt.

Its just so hard!!!

This year Maddison has lunch at 11am, recess after, and then PE immediately after that. Well shit! Surprisingly we have managed to stay pretty darn well in range for PE most days, but lately things are trending even lower during or after PE. Some days they toss rings over a net, and some days they run miles. It would be much easier to manage if we had a schedule of anticipated exercise wouldn't it?

We have decreased basals before and after PE. Increased protein at lunch. That worked for awhile. We have taken 15c off the lunch bolus. That worked for awhile. We have eaten 12c lifesavers before PE, done a combination of less carb bolus and less basal, added a snack after PE....and sometimes she will still go low. Not low low....but low enough to feel drained (60's) and unable to participate in the rest of PE, or she ends up missing out of class information later on as her brain recovers from roller coaster numbers. All D Moms know about IOB (active insulin) after eating, and how hard it can be to manage! That is a whole chapter in a book itself!

From what I see this week in Maddi's sugar log is that it isn't long before the "lows" will turn into LOW LOWS.

Now enter Momma bird who has been watching closely.

Time for even more dose changes. Why? Well.....because after 6 weeks of being back in school and running miles in PE nearly every day, (good riddance lazy summer) Maddi's metabolism is changing. Which means her body is more effectively using insulin, which means she suddenly needs less insulin than all summer long! Now I have the job of figuring out how to keep her body and mind functioning without being too high, or too low.... with a shit load of insulin on board from lunch, during PE. -Sigh-

Nothing new right? Every year our kids have a different situation with school classes, lunch, recess and PE, so eventually we figure out what works best to avoid lows and highs. Sad thing is, its all about trial and error. And our kids battle through the ups and downs until we get the numbers right. This is also a lot of extra responsibility and emotional stress to carry as a Mom!! We ARE responsible for their blood sugar numbers. We just are. No one should have to manage their child's health and body functions 24/7/365, but D Moms do. No wonder Maddison is at the point that some days she tries to avoid PE altogether. She just doesn't know which treatment plan to go by anymore! Every week has been different. But, so far this school year Maddi has been managing her Diabetes and making decisions just as well as any Momma bird I know! Im very proud of her knowledge to say the least :)

Teenagers. Middle School. Peers. Diabetes. Not an easy thing to manage, physically or emotionally. I was so naive to think it wouldn't be much different than years past. Parent or child.....this is the toughest age by far! Maddison has been venting away her Diabetes frustrations as they come, but I know that comments and other kids are beginning to eat away at her some days, and I dont blame her. I dont blame her one bit. Luckily, Maddison doesnt let it all bring her down. But if/when she wants to cry or scream and let it all out, I will encourage it. And then, we will move on. We are stronger than letting Diabetes, peers or PE craziness keep us down for long.

TEENAGER!!!!

For many months I have taken a blogging break. It seems one day you wake up and life with Diabetes JUST IS, and honestly, for quite awhile now the last thing I have wanted to think about or talk about..... or even ACKNOWLEDGE, was Diabetes.

DONE. OVER IT. TIRED OF THE WORD. NOTHING LEFT TO SAY.

And just when I thought hoped there was nothing left to say, Maddison turned 13.

Enough said, right?

It was as if overnight my buddy changed into another person. Everything I say is wrong, everything I do is wrong. Yep....this girl wants nothing but to fly the coop and get the hell away from her Mom. So, this Mom right here has WAY TOO MUCH time to do nothing but reflect on finding something for ME, and try to stay sane while parenting two teenage GIRLS that need me close, but not TOO close. Quite comical when you think about it actually!


This Summer was the first that I actually worked FT without a modified shorter schedule to stay home PT and "watch over" Diabetes. YEP. The age of (12 then and now 13) also means total self sufficiency of Diabetes care in the daytime hours. And you know what? That totally sucks because I LIVED for spending extra time in the Summer with my kids!!!! Bummer for me! Nowadays I also just drop Maddison off on her volunteer days, and just drop her off when she has her horse riding lessons! No more needing/wanting Mom there either!!

Bittersweet, for sure.

I miss my little kids!!

Im struggling with this growing up stuff. For real!! My Hannah turned 16 last November, and 17 is approaching too damn fast. Ive spent several months now just stuck in the blues. So many reasons, but the largest part of being so down for so long is that after spending 8 years as a Volleyball Mom (attending practices twice a week and tournaments every weekend) Hannah decided she no longer wanted to play competitive Volleyball. Even as a Varsity player. Can you say parental devastation? I've seriously been heart broken ever since. I never wanted that chapter in our lives to end. This is one reason I now have too much free time!!

Then of course there is the fact that Maddison's interests are changing with age, which means I now have EVEN MORE free time!! I have spent many, many years volunteering along side Maddison at various animal rescues (she still does occasionally) but nowadays her passion is focusing on horses, which means most days I simply drop her off for riding lessons and be on my way. Her lessons will be starting again soon since Summer is coming to an end, which FINALLY kick starts my motivation to get my shit together and pursue my own volunteering, projects, education and such!

So here I am with all this time to find ME, and Im back on my blog. What the heck? Well, VENTING IT ALL OUT **IS** ME!! Its not really bitching or complaining ya know. Its VENTING. Lets make sure you hear that right! Venting means I blurt it all out right here on my blog, and then move the heck on!! Since Maddison started school 6 weeks ago AND turned 13 in August we have had ALOT of Diabetes stress. A new MIDDLE SCHOOL schedule, crazy hormone resistance, new expectations/responsibilities in 7th grade (such as independently managing Diabetes without the school nurse involved!!)new teachers to educate, and so far the biggest struggle by far.....new TEENAGE peers with lots of opinions and questions about Diabetes. Yes, I said opinions.

Opinions. Comments. Remarks. Damn, they weren't kidding when they said the teen years with Diabetes are tough. Thats a vent
blog post for another day!

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!!!

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!

It shouldn't be

It shouldn't be that I have to wake my sleeping child before I go to work in the Summer... in fear that she may go low and wont wake up, EVER AGAIN. But Diabetes says I have to.

It shouldn't be that when she is sick and I'm at work I have to tell her no naps. But Diabetes says I have to.

Sure, I could call home in an hour or two and have her check her blood sugar....but what if she didnt wake up to the phone ringing? What if by then it was already too late?

Outsiders who dont live this life may think this sounds like Im over protective. Like I worry too much....but its our reality living with Diabetes.

It shouldn't be that a normal head cold inflicts life threatening ketones and wildly swinging blood sugars, but it does.

Today Im angry for many reasons not even closely related to this stupid disease....but somehow today Diabetes is about to push me over the edge.

Maddison just called me at work asking if she could go back to sleep for awhile...she has been sick for over a week with a nasty cold and as of yesterday has an ear infection. She feels like shit. If she didnt have any IOB I would without hesitation tell her to sleep as much as she needs....but to complicate things she JUST ate breakfast (which I carb counted and told her to bolus by phone) so now she has over 4 units of insulin active from her "guesstimated" carb count by phone which includes a correction for a 400 blood sugar that has haunted us all night.

FUCK YOU DIABETES.

Sometimes sleep isnt safe. That time would be now, because Im not home to stand watch over my child.

This could go either way. She could crash from the correction or she could crash from a wrong carb count. She could crash just because sometimes you do, or she could crash because basals arent set around naps.

Or, she could be perfectly fine.

Is a nap something you chance when there is no adult home to stand watch?

Today it is. It has to be. You cant always be there. Living life by chances is what we do. Im literally taking a chance on my child life by allowing her nap with Diabetes while I am away. That hurts my heart in SO many ways. Maddison needs her sleep right now, and no child should be told they cant sleep when they are sick. So, in comes the big Sister.

My sweet Hannah, I had to wake her up to let her know I will be calling back to have her check Maddisons blood sugar in 2 hours. I had to remind her that if Maddison kicks around and makes noises in her sleep she might be low. I had to remind her that just because her blood sugar was 400 all night, doesnt mean it wont come crashing down unexpectedly. I had to remind her that I appreciate her standing in to keep Maddison safe while she naps, and I had to remind her this isn't an option....its a must.

A simple nap, is so much more for our kids with Diabetes.

It just shouldn't be.

"Please Come Take Me Home"

Last week Maddison finally returned home from 7 days away at Diabetes camp. I couldn’t wait to see her smiling face and listen to all her camp stories! My half empty heart felt complete again as soon as she stepped off that bus, and Maddison’s endless chatter filled the car on the drive home. Besides looking run down and super tan, she also looked as though she grew many inches! Summertime (just before her birthday in August) is when Maddison seems to always grow the most! Luckily I caught up on some sleep while she was away at camp because I have a feeling things are about to get crazy with changes! Of course, the first 5 days or so home from Camp Maddison was running lowish from all the increased activity, even despite her pump still set on crazy basal and ratio decreases! I don’t think we saw a number over 120 for many, many days after camp, even though she was STARVING and eating non-stop! Now as things have gotten back to “normal” its right back to chasing numbers of course!

Maddi still has endless stories about all the fun times she had at camp, just as I expected. Sadly though, she made sure to tell me right away that she spent a lot of time “scary low” in the 30’s, 40’s and 50’s, so I figured I should take a second and ask her about the letter she mailed to us asking to come home. “Did you really want to come home? I asked. Her reply was a very quiet “YES.” Followed by a long silent pause. “Are the lows part of the reason you wanted to come home?” I asked. Her reply was “No, not really.” Then more silence. I then asked Maddison if she told them she wanted to go home, and she said she did tell them a few times but they told her that going home was “not an option.” Im not really so sure what I think about that....mostly because there were tears in her eyes as she told me!

YIKES. I quick changed the subject so we could talk about it later, because I wanted Maddison to tell me all about the hiking, archery, horse back riding, theme nights, and even the crazy pranks the counselors played. Yes, Maddison had a GREAT time, despite truely wanting to come home by the third day of camp.

So, later in the evening we talked more about why she wanted to come home from camp. Many of the things she told me were NOT what I expected to hear!

Reason #1 was because “Four people were standing over her when she woke up really low in the night” Maddison said this happened “a couple times” over the week and she remembers feeling panicked because there were so many people beside her watching to make sure her blood sugar came up. I can only imagine what her blood sugar was to cause such a stir with the medical professionals!!! I really, truly, honestly thought I was going to throw up when she told me this! Of course, the only logged blood sugar numbers that are sent home from camp are the pre-meal numbers and the bedtime number....Im guessing this is exactly why!!! I don’t think I even want to know, and its probably better that I dont! She made it home safe and thats all that matters right!!??

#2 The cabin bully. –Sigh- Maddison seems to always be a target for bullies, even though we have often had conversations about handling these situations in the past. I NEVER would have thought D camp would have a bully!!! I mean, these kids are with their assigned care givers almost constantly!! My heart was broken when I heard Maddison was bullied at camp, a time when she was supposed to feel indifferent and have the time of her life!!! It sounds like all the kids were aware of this “bully” and Maddison assured me the camp counselors did address some issues with this MEAN child several times during the stay at camp. Sadly though, Maddison felt it didn’t change much.

#3 Maddison says she was tired of all the “wildness” which means, she was simply tired of all the noise and constant people everywhere. I would have guessed this one! Maddison just isn’t the large gathering type most days, kinda like her mother.

#4 They made her climb the rock wall that she was afraid of. Well, she said she wanted to climb half way up the wall and then go back down, but they “made her” try and try again to make it to the top. She told me she ended up crying because she was so scared. Ive seen this same scenario on many rock walls unfortunetly! Maddison always wants to tackle those rock walls, but her fear of falling from “defective” ropes just takes over the higher up the wall she gets. Encouragement is one thing...but peer pressure is another. Maddison just doesn’t handle it well (and sometimes cant tell between the two) so I can only assume she was already lacking some confidence and struggling because of the “bully” at this point!

#4 The food. Picky eaters and camp don’t mix. Each camp year I have hope that Maddison will just try the damn food...but she starves herself instead! Its so frustrating!! I can see in her pump history that she was only eating about 10-20 carbs per meal, and she sounded mortified to tell me that they “forced” them to eat their food. She is such a drama queen when it comes to food. IT DRIVES ME CRAZY!!

#5 The boy she asked to Dance with her at the Dance said NO. –UGH- Geeezzzzz!!!!! What can you say to that!!?? My poor Maddie just seemed to have one strike to her confidence after another this year at camp! Im SO sad for her!

Even though this years camp experience wasn’t so great for Maddison she still had tons of fun. She is a tough girl and you cant keep her down for long! If I could change one thing for her at Camp it would be the fear she had in sleeping away from home with Diabetes! She can handle bullies, peer pressure and disappointments, but no child should be afraid to go to sleep at night!!! STUPID DIABETES!!!

When I asked Maddi if she would want to go to camp again next year she told me that even if the “BULLY” is not there she “PROBABLY WONT” want to go. UGH. That breaks my heart! Needless to say you can rest assured that the Camp director is aware of the “bullying" that Maddison experienced in detail, and we will still encourage her to know that very year at camp will be different! I hope all the other D campers out there had a better experience than we did this time around!

Its NOT the Damn Shots People!!

Saturday morning before dropping Maddison off for camp we planned to meet her Dad for breakfast downtown where he was working. It ended up a bit chaotic to say the least! Not only was **I** the passenger being driven around by my 15yr old who newly has her driving permit, but we were in an area of town that I am NOT familiar with. YIKES. Enough said!!! We ended up lost for a short while trying to find the breakfast meeting spot, so Maddison was a bit grumpy being worried about making it to the bus on time for departure. DOUBLE YIKES. I could feel my blood pressure (and probably blood sugar) rising minute by minute....

We finally found the IHOP with plenty of time to "relax" before having to head out to meet the bus for camp, but "relax" wasnt gonna happen with 2 giant Red Velvet Pancakes staring at me from Maddison's plate. What was I thinking? Icing, not syrup. Maddison gave me the evil eye when I ordered the icing on the side......What the hell? What kind of crazy new pancake is this anyway!!?? Maddison super bolused a crazy amount of carbs, and I tried my best to not wonder how she would feel arriving at Camp in a few hours. Would she bottom out low? Would she be sky high? I still dont know the answer to that....but Im sure her blood sugar will be logged in her book somewhere reflecting those crazy ass pancakes!! Today I'm still dying to know if we kicked some Diabetes ass with those pancakes or not....

So, guess what this "D" Mom did? FORGOT THE FUCKING PUMP SUPPLIES TO SEND TO CAMP!!! We didnt need to send a meter or strips. Not even insulin. We just needed to pack pump supplies to cover the week. -Sigh- OH MY GOD!!! They were at home on the kitchen counter!! My heart seriously fluttered. FLUTTERED!!!I literally felt my face turn pale white. Maddison was PISSED, she gave me an earful! Apparently I guess I become forgetful when being rushed out of the house by an excited 15yr old who couldnt wait to drive on the freeway! ACK!!!!

So, when we arrived at check in for camp Maddison was already frazzled. She had dark circles under her eyes after anxiously tossing and turning all night. She was irritated with me questioning her suitcase contents, yet **I** forgot the fucking pump supplies! As soon as we arrived to check in they were calling Maddison's bus number to finish loading. WHAT!!?? The damn camp day "instructions" said we needed to arrive by 11am to assure we had time to make the bus, and we arrived sharply at 11am.... So, whatever. Maddison felt rushed, I felt rushed.....and THEN......

She said it. I dont know who the hell this lady was....but she said.....

"If you don't have the pump supplies we can just put her on shots this week."

WHAT THE HELL!!??

If you could have seen the look in Maddison's eyes you would have DIED right then and there. She was SO MAD at me, SO scared for herself.

I literally laughed out loud (because I wanted to FREAK OUT!!) and said " Uhhhhhh NO!"

This crazy lady looked at me like **I** was unreasonable. Like **I** was making a big deal out of needles, or "shots."

In my mind I was SCREAMING!! Its not the fucking needles that are the problem, It just isnt that easy!!!! Ummmm.....yes, you are right crazy lady!! Shots arent a big deal. But do you know what IS?? Feeling like SHIT while you are at camp because your MOM forgot the pump supplies and now you are high or low, up, down and all around with a 24 hour injection of Lantus in your system that you cant fix if the calculated dose is WRONG. THAT is a big deal! Feeling like shit at camp IS a big deal. This is supposed to be a "Vacation" with Diabetes, I didnt want Maddison being a Guinea Pig as they try to get the Lantus right over the next 7 days....Shots would have been a HUGE deal. It just aint that easy! I have never been quite so mad at myself as I was at that moment!


So, instead of slapping this crazy chick like I really wanted to do, I told her I would Fedex overnight the pump supplies. So I did. End of story. Ugh. The Golden D Mom award goes to......... yours truely.

So, Maddison left for camp frazzled with an unknown blood sugar from a crazy ass breakfast, but Im sure she was happier than a clam to be away from ME at that moment!

Today is day 5 since Maddison left and Im bored to death. I guess Im used to driving her around from one place of volunteering to another. She sent a letter in the mail to her Dad on Tuesday...I didnt get ANYTHING. ?????? I really did have tears in my eyes!!

Yesterday we got a letter addressed to "Roxxie and Callie"(her dogs)but again, nothing for me!!! ????????WHATTTTT???????? She must REALLY be mad.

The letter said: "Please come and take me home"

And that was it.

I didnt think anything of it. I thought she was being silly writing a letter to her dogs....but while I sat at work today I couldnt help but wonder if she was being serious. My heart began to feel broken. So I called the camp.

Maddi's camp counselor told me she was struggling the beginning of the week with "homesickness" and that was about it. She had nothing else to say but Maddison is doing "fine." She didnt sound so sure.

If I know Maddison, I can tell you she isnt so much homesick as she is just DONE with all the fun. She doesnt like alot of noise, and dreads large parties because of too much commotion. Camp is like a 7 day party. Its loud. Its CRAZY. Its non-stop "fun" for those of us that enjoy a week full of commotion. Thats not Maddison, but I know she will be fine. She might have a headache and hide out in her room for the next month, but she will be fine. 2 more days....just TWO MORE DAYS!!!!

Camp AZDA Year 2

Tomorrow at noon Maddison leaves for CampAZDA. This will be just our second year sending Maddison to Diabetes camp, but let me tell ya, people aren't kidding when they say Diabetes Camp is something their child talks about all year! Maddison has had her suitcase packed for almost 3 weeks now, and has been eagerly anticipating camp since Spring break! So far I have been nearly worry free about sending Maddison to camp this time around......until bedtime rolled around tonight!

Now I can't sleep. And neither can Maddi. Both for VERY different, and total opposite reasons.

Maddison couldnt wait to go to bed tonight. In the summer I always have to drag that kid to bed, but not tonight. You'd think she were going to Disneyland in the morning or something! She is giddy. Bubbly. Smiley. Trying SO hard to sleep! I can hear her still tossing and turning down the hall...

Her bedtime number tonight was 106. -Sigh- A beautiful number. A number that Im fairly confident will rise to around 150 or 160.

Or maybe not.

Sometimes Maddi will spike to over 200 lately, just after falling asleep. So I sit and wait another hour to recheck.

I then realized this "bedtime" check is the last I will see for Maddi until JUNE 16th!!!!!!!!!!!!! Thats 8 nights away!!!!!!!!!!!!!!!!!

I think my heart just skipped a beat.

Oh man. I was doing so good. I guess it was just wishful thinking that this time around I wouldnt have the same worries about sending Maddi to camp. But in reality Diabetes never changes, and neither does the endless concern of blood sugars. So, here I am again tonight wondering how I will *sanely* make it through the next 8 nights without knowing ANYTHING about Maddison's blood sugars. I feel empty already, and Maddi hasn't even gone away to camp yet!!

This kind of concern and "worry" is something that no person/parent could EVER understand, unless you live this Diabetes life. -Sigh-

But, the truth is, this isnt all stressful.

It is also incredibly heartwarming.

Friendships will be made. Confidence will grow. Most importantly....the children at Diabetes camp will be surrounded with UNDERSTANDING. We are all in this together. We learn from each other, share with each other, support one another, encourage each other, trust and confide in one another.....UNITE.

I will myself grow (or let go) from this whole camp experience every bit (if not more!) as Maddison will, and THAT in itself is what this journey called life is all about.



(((So now I will secretly and silently go climb in bed with Maddison and hold her tight, PRAYING for a cure!!!)))

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.