KINKED! Apidra and CGM

Saturday evening when I changed my site, OUCH!! That one really hurt! I used the back/side of my love handles like I always do, so why do some sites just hurt and send shooting pains all over? WEIRD.

I also filled my pump with APIDRA insulin for the first time. We have very little Novolog left, and I'm saving that for Maddison. Im the Guinea Pig this time. Apridra is a fast acting insulin that starts to work quicker than Novolog and peaks much sooner, around the first hour. Im not so sure its going to work for me since I dont tend to "spike" after eating, and so far I've had ALOT of lows. I dont like being a Guinea Pig!

Back to Saturday evening....dinner was planned at my Moms house....my BS was 104 when we left. I didnt bother to check my BS before eating, because Ive been in range all day the last month or so anyway. That was my first mistake.

After dinner I felt it. My eyes were burning and glossy. Thirst took over. I wanted to sleep. 386. HMMMMM....first I assumed I bolused the whole wheat pasta wrong on a square wave. Then I blamed the Apidra. I was sure Apidra just wasnt for me. I corrected. I rechecked 40 minutes later.....408. Ummmmmmmm....DUH! It must be a "bad site"!! I have never, ever had a "bad site" in 4 years of pumping. Ive had sites that dont work well, but never a "bad site" that was ruined right from insertion!

If this were Maddison that just ate 80c for dinner with a bad site and no basals for 2 hours she would be HI. As in, 700's, 800's.....who knows. I was lucky to be 408. I was UNLUCKY because I didnt have a spare pump set in my purse and Josh had left for a poker game! I was left at my moms with just syringes!! So, I injected 2u and thought I'd watch and see how "fast" this Apidra works. 40 minutes later I was 306. Thats pretty darn fast :)

Long story short, when I arrived home later that night and pulled out my "bad site" and it was entirely, completely KINKED in HALF. No insulin for nearly 5 hours (except the 2u correction) and I was still on my way down with some super duper fast acting APIDRA. WOW. Im impressed. AND, it looks like my broken pancreas still produces enough insulin to keep me safe, being that I never had ketones and never hit HI. Im not your average person with Diabetes, thats for sure. I think my next labs I might request a Cpeptide :)

The CGM.......Oh......Today Maddison cried. She hid. She refused to come out. She pleaded with me to not insert the CGM. Maddison has never even seen the needle! She just doesn't want to wear it. I know Maddison is playing with my mind. I know that she plays up "hating" the CGM simply because if she has a choice to wear it or not, she will 200% say NO! I cant blame her, and I dont doubt that sometimes that needle does HURT! I know the CGM is a nuisance when the tape itches. It is painful when you bump it. But tomorrow school starts and I NEED to see whats going on in that little body of hers!

The trends. The trends that the CGM shows is priceless. I can sleep a 3 hour stretch at night and simply scroll back through the hours and see exactly where Maddison starts to go high or low. Without a finger poke every hour. Without guessing. The school day? I can SEE on a graph exactly how her body responds to waking earlier, breakfast, and the first school bell of the year. Sitting at a desk all day. Anxiety. Excitement. Recess. As much as I HATE to force the CGM on Maddison, right now I vote for technology. I have to.

I know in my heart Maddison makes the CGM worse than it is. She really does. Its a power struggle. Maddison wants to have the voice to say she chooses NOT to wear the CGM. I understand that. BUT....when as a parent do you make the choice for them because you know best? If Maddison wanted to stop using the pump I would agree. **IF** she adjusted well to injections, I would surely do everything in my power to make injections work. If Maddison struggled with highs, lows, or extremes and failed to take injections with every carb eaten, then I AS THE PARENT would have to say the pump was a necessary part of her health. We have to.

Its hard. I feel guilty for Maddison's tears today. I dont want her to have to wear the CGM. Mom knows whats best. Right now, the CGM is best. Maddison and I made a deal.....As soon as I can make adjustments to her insulin for school days and maintain safe numbers she will not have to wear the CGM again until things go bonkers. I always try my damnest to avoid the CGM. She knows that. I hope some day she will actually understand why us parent do what we have to do. Until then, my heart aches for forcing this on her, yet at the same time I rejoice in the power of latest technolgy!

ME

Most days with Diabetes we just do what we have to do without much thought. Poke tiny calloused fingers. Dab blood onto tiny strips. Count carbs. Dose insulin. Recheck. Correct. Treat lows. Treat highs. Move on. Its just routine in our lives with Diabetes. Most days Diabetes doesn't bring much thought or emotions. But, we all know about the "bad" days or difficult spells when nothing seems to turn out right. Highs. Lows. Ketones. And then you step back and realize....ME, this is all up to ME.

Diabetes has to be one of the few diseases that are entirely self managed. Parents make the adjustments to insulin doses without any medical advice. (once you are comfortable) We manage exercise, food, growth spurts, illness. We make the call. Me as the parent, I know best what adjustments need to be made. It comes with experience. Time. Knowing every detail of your child's day. Parents with Diabetic kids are keeping our children healthy. ALIVE. We are their future of health. Yet all we can do is our best.

ME. Its all up to ME.

Leaving work yesterday I mentioned to a co-worker that I was stressed for school to start Monday. "Oh but Maddison's older now and can take care of herself" she says. "Maddison will get herself figured out for the new school year, you shouldn't worry" she says.

I just wanted to scream.

Outsiders don't know. They don't know that Monday morning when school starts Diabetes as we have known it all summer will change. Insulin doses are likely to double. Why? I dont know for sure, but it never fails to amaze me. Its not sending Maddison off to school that is the worry. I know she can care for herself with guidance from the nurse. Its not that.

The stress is, its up to ME to figure out where to adjust insulin dosing for out of range numbers. Starting Monday with the return to school, Diabetes will be WILD. UNPREDICTABLE. It never fails. Do you know 300's and 400's are not uncommon in our children? Most people would be SHOCKED to know that sometimes Diabetes inflicts these kinds of numbers. Sometimes, it takes weeks to figure it out. Technology has brought insulin pumps. Insulin pumps can provide superior blood sugar control if WE as parents get the doses right. With an insulin pump we manage insulin dosing by the hour. Thats alot of mind work to get each hour right.

So where to start with adjustments when every blood sugar pops up wrong? 6am? 7am? Noon? Basal? Bolus? Correction factor? If you dont get morning doses right the entire day is likely to be a mess. And that hurts my child. It hurts her body. It hurts her mind. It hurts ME.

Me. Its all up to me. Now what the hell is the problem after lunch? Is it a wrong carb count? Zooming around on the playground? The AZ heat? Basal? Bolus? Is she going through a growth spurt so conveniently as the first day of school starts? Bad site? Should we stop using her arms and move to her tummy? Stress? Anxiety? What is causing these crazy numbers?

I'm stressed out when Maddison's blood sugars go wild at school. I'd be lying if I pretended I just adjust insulin doses and move on without worry or concern. Wild blood sugars happen. They WILL happen on Monday as school resumes, they always do. Maybe Maddison will be sitting at school all day high. Highs hurt her body. Highs keep her feeling ICKY. Headaches. Thirst. Tummy aches. Highs keep Maddison from cognitively being herself. She misses out on class time when going to the nurse. Missing out on class time means Maddison is missing her education. It is a dominoe affect, and its all up to ME to get her numbers under control.

Maybe this year Maddison will start back to school with lows. Her little heart palpitates. She's confused. She can't walk without her legs feeling like jello. She is sweaty. She is pale. She feels the life being sucked out of her.

ME....Diabetes is all managed by me, and it hurts my heart when I don't get it adjusted just right.

One messed up day turns into 3. I do everything I can to track numbers. Logging every detail of her day. I change this. I change that. Sometimes you make it WORSE. Sometimes you cause serious lows. Or serious highs. What you adjusted wasn't right....or, maybe today is just different than yesterday. How was I to know? 3 days of chasing numbers turns into a week. A month. Sometimes it takes weeks or months to adjust insulin doses just right. And then, after what was hopefully a nice long spell of "control" it all changes. And we start over.

ME. Its all up to me, and sometimes I despise that. Where is our freaking cure anyway?

I know in my mind all I can do is my best. I know in my mind that its not my "fault" when nothing works out right. I know in my mind I shouldn't stress over the low I "caused" or the highs that haunt all day. But my HEART feels differently. My heart hurts for every wrong number. My heart is angry when I can't get it right. Id be lying if I said it didn't affect me right down to the core. I know myself what that low feels like. I know how that high day makes you feel. I know what 32 years of crazy blood sugars can do to a person. I lived it as a child with my Dad. Faced my own diagnosis. Watched my father suffer for years, and die in my arms because Diabetes is a SICK unpredictable disease. Maybe that's why every number hurts my heart. Maybe that's why I stress.

ME. Its all up to me. I keep my child healthy. I keep her from highs. I keep her from lows. Or, at least I try my best. All I can do is my best. I know that. But, sometimes like now when I am faced with back to school craziness I start to worry again. I feel the pressure to "get it right" and can only HOPE it all falls into place quickly. Without hurting her along the way.

Reminder. Back to school with D

For the first time since Maddison's diagnosis in 2006, I feel comfortable....even READY to send her back to school this year. Maddison is so much older and responsible now, and we are very fortunate she has never had trouble sensing her lows like alot of people/children with Diabetes. Of course, my biggest comfort by far is our school Nurse who has cared for Maddison since day 1. I could never feel this level of comfort without her!

Then came a reminder. For just seconds it all flashed through my mind.

Today was time to gather the supplies Maddison will need in the Nurses office for the school year. Supplies Maddison needs to manage her Diabetes. Supplies that keep her safe, healthy.....ALIVE. Supplies that most parents don't have to gather for a new school year. Diabetes flashed through my mind, and then entered a twinge of anger and sadness...fear.....becuase in our life, we DO have to think about these things. Always. The emotions of Diabetes will slap you in the face when you least expect it. Even when you were just trying to get ready for a new school year.

Most days we forget the seriousness of this disease. We forget that our child is kept alive by a precious hormone that their body no longer makes. We forget that the insulin pump attached could fill with air bubbles blocking insulin from entering their body. Without insulin, blood sugar will rise. Without insulin, my child will die. Packing up school supplies.....a reminder.

Parents that have children with Diabetes are forced to set aside our fears. Day after day after day. We must move on past yesterdays scary lows and manage for today. We fight the highs. We track patterns. Every day is different. We can only do our best. Stay diligent. This all brings a bit of fear to life. We are only human. We are not a pancreas. Reminders. As parents we must stop the worry in our hearts for our children's future. We hide our worries of sudden death, kidney failure, blindness. We must send our "D" kids off into the world with faith that they will be safe from a medical emergency at any moment. Its hard. Back to school is TOUGH for all parents that have kids with special needs! Today, I was reminded.

So what does a T1 kid need at school?


Blood meter
Test strips
Alcohol swabs
Extra meter batteries
Control solution (to make sure the meter is working properly)
Lancets
INSULIN
Pump supplies
extra pump batteries
Syringes for pump failures

Carb book
Instruction manual for Insulin Pump
DETAILED 504 TREATMENT PLAN IN PLACE! Revised each year!
Log book


Endless juice boxes
Glucose tablets for lows
Snacks for lows
GLUCAGON INJECTION FOR Low EMERGENCIES!! (seizures, loss of consciousness etc)
Glucose gel
More snacks for lows
Low carb/no carb snacks for highs
Endless water bottles for highs
Special no carb drink replacement for class parties
More snacks
More glucose tabs

Stress. Excitement. New sleep patterns. New waking times. New routines. It all changes Diabetes management. Growth spurts. Illness. Weather. Sitting at a desk all day. Running around the playground. Here comes the new school year. As much as I find comfort in my heart for this new school year, the reminders are always there.

Summer Kitty

Nature or Nurture? Maddison's summer kitty thinks he is just like our Golden Retrievers....







I dont know if "Kitty" really likes to swim, but he sure doesn't mind it! Maddison has a new swimming buddy this summer and she couldnt be happier :)

One week

Hannah left for her cruise to the Cayman Islands (8th grade promotion gift from her Auntie) on Sunday night. Its only been 48 hours since Hannah left, but I miss her terribly. One whole week Hannah will be gone. This will be a very long, quiet time in our house. Its just not the same without Hannah here, my sunshine is gone for 5 more days!!

Hannah typically spends at least 4 days a week with her friends throughout the summer. Alot of times all the girls gather here, but Hannah also does alot of bouncing from each friends house to the next, so we have strangely grown used to her not being here as much as she used to be. These girls travel in a pack. I love each and every one of them. They are such a fun, silly, happy bunch of girls. The silence in our house right now is deadly without them here. I can't wait till Hannah is back home!!

Hannah's trip makes me think......One week is the same amount of time that our D kids spend away at camp. One WEEK? One week without contact? One week without Maddison's sweet voice? Why doesn't the camp let you talk to your kid for a week? Cant I just call her each night before bed? I just dont get that. Maddison *could* have gone to camp this year. And last year. And the year before that. Its totally MY issue....I just can't shake the fact that when I actually FORCE myself to send Maddison to camp I wont hear her voice or see her beautiful smile for A WHOLE WEEK!I'm two days without my Hannah and I miss her already! Send my D child to camp for a WEEK without ANY contact? -UGH-

Hannah is healthy. I am not her Pancreas. I do not keep her alive with a precious medication and 24/7 diligence. I can send Hannah off with nothing but excitement for the adventure before her. We just can't do that when it comes to our D kids. The worry. The what ifs. Giving up management of a life threatening disease? It can all eat you alive.

I know, silly me, I'm missing my Hannah and already thinking about Maddison's week away at camp next year!

Our long boring summer is coming to an end. Two weeks left! Im SO looking forward to getting back on a schedule, but I'm not looking forward to the worry and stress that a new school year brings with Diabetes. Maddison's numbers will go bonkers. Thats a given. I worry how long it will take to gain back "control." I'll spend endless hours tracking numbers and making insulin and food adjustments. I'll have sleepless nights trying to get the new basal rates set for different sleeping hours. Meeting the teacher, explaining Diabetes. Helping Maddison feel comfortable in a new class without feeling like "the girl with Diabetes." Working through all the new details of a testing and eating schedules at school, educating the bus driver, the new PE teacher......its exhausting. Good thing all us D moms have each other! Life's about to get back to CRAZY!

SHIT

Nice blog title hugh? Thats all I can think right about now. SHIT! Now what? My finger poke a1c was 6.4...I kept saying that couldnt be right. Sure enough, my lab work showed a 7.0 just drawn on Thursday. Hows that for accuracy? I never trusted those finger poke A1c's anyway.

My TSH is low (.172)...indicating hyperthyroid, Graves disease or adrenal concerns. Thyroid or adrenal tumors at worst. Fabulous. I guess my recent weight loss isnt just stress related. Or, maybe my everything is whacked out from the stress. Who knows. I'll be going in for further lab work, an ACTH Challenge Test to evaluate my adrenal glands later this week.

Fun stuff hugh? As always, Im just a ray of sunshine on my blog. I'm feeling a bit grumpy about all this right now. -Sigh-

Goodbye Foot Naitze

Its time for me to get back on track with my D management, so tomorrow I see a new Endo. Dr Dajani, Maddison's Endo will see adult patients up to age 40. She is exactly what I need right now. I havent been taking care of myself as I should. I'm only checking my blood sugar 3-6 times a day. Running high WAY TOO OFTEN. I feel low at 90. Its been bad. Im ashamed. What used to be 90's-160's has become 180's to 300's. My A1c is going to be the highest EVER, and when I hear it I might just cry.

The Endo I've had for the past 4 years had to go. Besides being a foot naitze (no flip flops, toe rings, pedicures) she is the type that always expects "perfection." My a1c has been between 6.0-6.3 without much effort since I was diagnosed. My last was 6.5% and the Foot Naitze nagged at me for it. Seriously? If I walked into her office over 7% she'd call me non-compliant. Thats just how she is. (she mostly sees T2 patients anyway) So goodbye foot naitze, I don't need to hear it right now. I need motivation and understanding, not criticism.

There is alot of chaos going on this summer. Im not going into detail, but I have been an emotional train wreck. My mom is also struggling with loneliness, and our hearts are void and broken since my Dads death. We spoke to a counselor that Hospice provided, and it did nothing but take our mending hearts and rip them open. Some things are better left alone. I dont want to recall those 25 days in ICU. I just want to move forward and know my Dad is in peace. Without Diabetes. Without Dialysis. Without the pain of neuropathy and blindness.

So, Ive let my Diabetes care slide in this time of heart ache. I cant eat. I'm nauseated all day. I've lost 10 pounds because I cant eat and my blood sugars remain in the higher range. Im way to thin and I've lost alot of muscle mass. I'm not looking so good. I actually wonder if something else is going on. Maybe my Goiter or Thyroid masses are changing. Who knows. What I do know is today I'm actually back to trying to tame this demon. Diabetes needs to be tamed. I promise to check my sugars more. I promise to eat. I promise to make adjustments where needed instead of just ignoring the fact that my Diabetes isnt easy anymore. My promise to myself. My current BS is 336....and I should be ashamed.

Maddison's numbers have been GREAT. This has been very boring summer, except that Ms Hannah is always entertaining with her silly girlfriends here every day. Its time to get ready for back to school. Where has the summer gone?

Goodbye foot naitze. I need understanding right now, and Dr Dajani is exactly that. I need to get back on track without the guilt of whatever my A1c reveals. I'm moving forward and refuse to look back.