Discouraged and Humiliated

47 today in the same time frame. Followed by a 418. More dosing changes for tomorrow. I'm so discouraged, I'm speechless about it all.

I searched the Internet for hours today, trying to prove to myself that Maddison really does need a biopsy to rule out Celiac disease. I know all of Maddison's labs came back fine without any antibodies indicating Celiac......but Maddison also doesn't have any anti-islet cell antibodies, anti-insulin antibodies or anti-glutamic decarboxylase antibodies (GAD)!!! Maybe she just doesnt have Celiac antibodies!!?? Celiac's absorption issues would explain alot right now, especially when Maddison has at least 9 red flag symptoms of Celiac disease including bone growth delay and short stature. November 3rd we see the Endo....I have alot of questions!

Strange thing, today Maddison asked me if I think she has Celiac. "Why?" I asked. "Because every time I eat my stomach hurts" she said. -Sigh- I think Maddison is tired of hurting and just wants an answer. So do I.

Being entirely discouraged today didnt stop me from sitting down with the dreaded log book. This is my child here Diabetes! We never give up! So, what did I see? Saturdays and Sundays Maddison hasn't had a low in months. On Mondays Maddison is ALWAYS high. I think that's called Miserable Monday Syndrome. On Fridays Maddison is always low or leaning towards that way. I think thats called "hooray the week is over excitement." Tuesday through Thursdays......are whatever they choose to be. Randomly. Talk about discouraged.

I wish I had something good to talk about today, I really do. Unfortunately, when I picked up Maddison from school she was about to burst into tears. She held them back with all her might until she couldn't anymore, and then she sobbed. I've been dreading this day. Maddison's teacher gives an ice cream celebration party to the kids that meet the addition/subtraction goal for this month. That goal is finishing timed tests in 3 minutes without error. Try, try and try again....Maddison just can't do it. So, now Maddison will sit in another classroom while all the other kids "celebrate" their success and Maddison feels nothing but failure. How nice.

I already talked to the teacher months ago about how I felt this "celebration" was wrong in so many ways. Her suggestion was to study hard. What about the kids that couldn't pass the tests timely but got every answer right? Too bad. What about the kids that DID give their best effort? Now they have to feel bad about themselves because they aren't up to the level of everyone else? Hows that for humiliation? I'm so ticked off about this "celebration" I cant even see straight! On top of the "celebration" being wrong in so many ways, Maddison herself has been through SO much lately. She's already feeling depressed and discouraged in math. THIS was the last thing she needed right now. Did I also mention that Math is right after lunch? You know, the time frame in which Diabetes FREAKS OUT and strikes Maddison with life threatening lows here and there. I cant help but be ticked off for Maddison missing this celebration when she's missing math time most days of the week for a f'ed up disease that wont leave her alone to learn in class!!! UGH!!

Ok, something good.....I will mention our JDRF Walk is Saturday on Halloween! That's something to be excited about! Then its Hannah's birthday! My baby Hannah will be 13!! THIRTEEN!!! Which makes me feel very old! Then the holidays........ewwwww......I could do without those. But, tomorrow is a new day. I think I have a plan. Look forward and not back..........just keep swimming.......

The panic that wasn't

I was a bad sleeping mom last night. I didn't wake up for Maddison's 2am check as I planned. Maddison went to bed too high at 226, it was a fundraiser night for the school at Chick-fil-a which meant Maddison had ice cream with all the other kids. Ice cream.....ohhhhhh how I dread ice cream night. For some reason Maddison can eat ice cream during the day without much problem. At night however, ice cream comes back to haunt Maddison's blood sugar around the six hour mark. To this day I haven't figured out ice cream for Maddison. I like to just hide from it. I've square waved, dual waved.....how do you stop a high in the sixth hour? Correct it and move on I guess. So, by the time I jumped out of bed at 5am Maddison was 386, and I was ticked off at myself for turning off my alarm!

I was worried about correcting that 386 in full before breakfast because the LOWS that have moved to mornings. So, I decided I would check that correction factor and let Maddison stay home from school an extra half hour while I watched her come down. A later breakfast today helped me see Maddison's correction factor is pretty darn accurate. She was 179 as breakfast started with just .1 active from the correction. I breathed a sigh of relief and sent Maddison on her way to school.

Since breakfast was late, Maddison wouldn't need to check her blood sugar at the scheduled 9:30 time. At lunch Maddison was 79. I silently cheered when the email popped up at work. And then, I started to think too much. I started to worry that the after lunch lows would re-appear because Maddison was only 79 going in to lunch. 79 isn't that far off from the 20's I kept thinking. What if Maddison runs wild at recess today? What if the cooler 60 degree temperature today makes her little body use up so much more energy to stay warm. Using up more energy would mean you burn your calories faster and your metabolism changes which means insulin is used differently Right? I convinced myself all of this was true and would indeed cause a low today. Not just any low, but these scary lows we know all too well.

My heart started racing. I was jittery in fear of 20's at school. I was in full panic mode! I emailed the nurse to ask her to go give Maddison an additional 12c because I feared she would go low. I'm sure she thought I was crazy, but I didn't care at that point. 12:40 was approaching quickly, that's time Maddison has had many lows at school. I was sure my panic was a warning to trust my motherly instinct. And then, I realized.....I'm not panicking! I'm low!!! I forgot to eat my lunch I bolused for half an hour ago!! Sure enough, there was a 40 staring back at me on my meter screen. I couldn't help but laugh at myself. I was so worried about Maddison that I forgot to eat my lunch! So that is my story about the panic that wasn't! LOL

And what happened with Maddison getting the extra 12c without insulin? She was 337 for her 2pm snack time, and I wanted to kick myself. :) Lesson learned.

The buzz in blog land

One person's lack of compassion and extreme ignorance has everyone in Diabetes Blogger land lashing out. Read what what my dear blogger friend Hallie posted about all this today. Yes, people with Diabetes experience this kind of ignorance every day.

Can you hear me?

Diabetes, can you hear me screaming and cursing at you? I'm done with this dirty game you play. I'm done with you hurting my child, and threatening her life with crazy lows! I'm DONE! Friday there was absolutely no reason for you to inflict another 22 on my sweet child. I reduced the insulin I feed you. There wasn't any PE. There wasn't any recess either. It was just an early release day. WHY do you hurt my child every day? Why do you want me to treat you different every single day lately? Can't you just behave? My child is struggling immensely because of you these days. She is scared, and now she's depressed that you have been taking so much away from her. She misses class time, PE and recess, even though I feed you as I should. Can you hear me pleading with you to stop this insanity!!??

Today started with a search for our missing birdies. Dad was sure he could hear the Love Birds up in the trees. Sure enough, one Peach Faced Love bird stared at us from atop of the trees. HOPE. Maddison has kept believing that her birdies are near. No amount of coaxing would get that bird to come down and eat his apple. But, Maddison was still happy because she knows at least one Love Bird is okay. She still has HOPE for all the others and she knows her Quail is back where he belongs. Maddison believes all her birds are happy. A very forgiving and understanding child my Maddison is. Just the same, Maddison still has HOPE for a Diabetes cure and believes that one day she will be free from this monster.

With all the excitement from chasing birdies, I worried about Maddison going low at school. Today is also a PE day, so I under bolused her breakfast. I spoke with the Nurse at school asking her to give Maddison 15c of Gatorade before PE if Maddison was under 200. She was 224. Therefore, the nurse didnt even give the normal 8c that Maddison gets on PE days. I dont know why. 40 minutes later Maddison was 36. 15c of juice, rechecked again at 36. 15 more carbs of juice and Maddison was 207. I'm not sure why the nurse felt Maddison would drop again, but she did. She gave Maddison 4 Glucose tabs. Recheck at lunch showed 399.

-Sigh- I cringe thinking of how Maddison must feel today. 36 to 399, then eating lunch when she's sky high.....I hate this F'ed up disease. I hate Diabetes at school. I hate having someone else make the decisions that I should be making. There is no possible way to write Diabetes care down on paper when its been this wild and unpredictable lately. Right now the nurse and I are just trying to keep away the lows, there aren't any rules to follow. Maddison crashes randomly at school but not at home? What the hell is going on?

Diabetes, can you hear me crying for this to STOP? The guilt, anger, fear and sadness I feel is beyond belief. Fear of Diabetes all over again. I still can't sleep. My mind runs wild trying to decide what to do next. I look over blood sugar logs multiple times a day until I can't any longer. Seriously Diabetes, I am DONE. I feel like I'm being pushed over the edge. I used to be confident in the decisions I make in caring for Maddison, now I'm aimless and confused. Diabetes, you have NEVER treated my child this terribly in the past! Why are you now!!?? Even when we were new to Diabetes we never saw this kind of chaos. What do you want from me? Is someone up there testing me? Seeing how much I can take before I explode?

Maddison used to be "proud" of you Diabetes, because you made her feel special. Special foods, special eating times, snacks in school, candy before bedtime. That feeling isn't anymore. There is a fine line between special and different. What used to be special is now a burden in times like these when you lash out. Maddison used to talk about how brave she and all her friends with Diabetes are. She used to feel strong and resilient knowing on a daily basis she endures so much more than most kids her age. Now she feels weakened and beat down by you daily. How much can one
9yr old child take before you start to change who they are? She's scared. Maddison is afraid of these lows and afraid of what the future holds. Lately, Maddison isn't the girl she used to be. These past few weeks you have really changed the way she feels about you, and I hate you for that, with every ounce of my being.

Can you hear me Diabetes? You will not win this battle. With every number that beats us down, we get back up. And you know what? We aren't weakened by these difficult times. We are made stronger. We will get back to our comfort place in life and live with you in the background. You will stop taking from us and Maddison will be herself again. She will not fear you, nor will I.

Perfectly Said

Today's blog post by Kelly Kunik says so much of what we feel with Diabetes that people just can't understand unless they live this life themselves.

Click here to read "Dear Diabetes Guilt." Perfectly said Kelly.

Gone

Last night when we came home from dinner with my Dad, we found the door to Maddison's aviary wide open. I was SURE we double checked it before we left. I was sure the lock was on correctly. I dont know what happened. Maddison's pair of Love birds are gone. "Peep Peep" Maddison's beloved Quail is gone. Two Parakeets and a Cockatiel, gone. They are all gone. Maddison cried for hours and couldn't go to sleep even after we searched outside as best we could after dark. Hannah cried, more than I've seen her cry since Harlee died. And now we search aimless just trying to stay hopeful.

Poor Maddison, she feels so guilty. She keeps saying how mad she is at herself for causing her birdies harm. Maddison said if Peep Peep doesn't come back then she doesn't want an aviary anymore. We are lucky to still have Junie B the Cockatiel and two Parakeets in the aviary. I wonder why they stayed? We all feel terribly guilty and confused how this happened. Its almost like someone came and opened the door for them! We feel empty and saddened without our happy birds singing the day away out in the sunshine.

This morning I woke up at 52. Not a good way to start your day. Once I realized I was low, the extreme hunger took over. 4 bowls of cereal later I figured a workout was not gonna happen since now I had to bolus 4 units to cover the food binge. I hate when lows make you eat out of control! No phone calls from the nurse today :) Maddison was 280's after breakfast, 170 before lunch, and then 138 2 hours after lunch. BUT, the 138 made Maddison feel low. Anticipating a crazy drop into the 20's again, the nurse did exactly as I probably would have done....she gave Maddison 12c of juice just in case. Rechecked in 15 min and saw a 219 so she bolused for the juice. Way to go school nurse! I was very happy she tried to prevent a drop that she thought might be happening.

Tomorrow we start over. Tweak this and tweak that. We will get there, eventually. Right now we are just trying to avoid the weird lows. Tomorrow we will be closer to getting things figured out. Right?

Weekend updates

Saturday Hannah's school Volleyball team lost a single elimination tournament that could have placed them in the district finals. I have never seen so many ticked off parents at a coach! LONG STORY....but coach never wanted to coach this year. Coach is also the crazy lady that taught Maddison last year in 2nd grade, so I know her weird personality all too well. Coach played all her best players in the 1st two games, but in the third deciding game, she played ALL her weakest players. Why? Because if Hannah's team won that third game we would have continued on to the finals, which would have continued all day and into next week. It was obvious to everyone that coach wanted to lose and be done for the season. Seriously. But, that's okay. Hannah was DONE too, she didn't want to continue with this team or crazy coach. Club tryouts are 2 weeks away. Good riddance to crazy coaches!!

Maddison's reduced basal on Saturday to avoid 20's = 280 all day. If you dont get morning right its pretty hard to get the rest of the day right!! MONDAY tomorrow, I'm not sure WHAT to do. As the Endo approved, I lowered Maddison's 7am-9am from .25 to .15 even though I was sure that wasn't gonna work for the weekend. Better to see a some highs than a 20 of course! Today I bumped her basals back up to .20 and still saw results the same as yesterday. I'm dreading sending Maddison to school tomorrow, I really am. I know she's going to run high, but we can't continue on a 20 path.
-Sigh- This is going to painful for me to watch 200's take over in order to avoid lows. What do you do when nothing makes sense?

Today I took Maddison to HEAVEN, a Bird Expo held by the Avian Society that is! You should have seen her face as we walked into the event area. She looked like a child on Christmas morning :) Hundreds of vendors selling anything that has to do with birds, toys, food, treats, cages.....and HUNDREDS of birds for sale from local breeders!!So what did we come home with besides a ton of stuff to make homemade bird toys? Two precious baby Button Quails!!! "Peep" needs a friend in the aviary right? Actually, these babies are newly hatched and can't join the aviary birds for a couple of weeks....so whats a little girl to do? I guess now Maddison just gives lots of love to hand raise a few more Quail chicks :) ((Pictures coming soon!!))

How?Why?

The how and the why doesn't matter anymore. It is what it is. Today Maddison was 22 at school, the same time frame as yesterday. 20's have moved from the afternoons to the mornings after breakfast. How and why? There isn't an answer, it just is. An overwhelmingly scary truth.

After calling the Endo yet again today I learned that I really am alone in managing this disease, even when things get out of control and scary. Me, its all up to ME. They haven't been able to offer me any advice that I haven't already tried or hadn't already planned to do. I've called in for every 20ish number Maddison has had this school year. I always think the nurses will suggest making a change that will magically make sense, but it never ends up that way. Today they suggested changing the basal exactly as I planned. I guess we really are the Diabetes experts aren't we? Thats a scary realization. A very lonely feeling. I wish a nurse or an Endo had the magic answers. I really do.

Half way to work this morning I felt an overwhelming urge to turn around and go back to school so I could change Maddison's basals. I didn't, and I'm so mad at myself for that. Yesterdays low was after PE. I told myself it was because Maddison didnt check her BS beforehand or get her snack for PE. That would make sense right? No extra carbs for activity, and no check before PE to me, was the cause of the low. So, I didnt lower her basals for today AND she didnt have PE. After all, Maddison was high every morning this week. Who would have known that literally overnight Maddison's basals needed to change to what they were 4 weeks ago? Unfortunately today, I do know.

How? Why? I have to stop asking those questions. I've rarely seen a number that I couldnt explain. Or at least convinced myself I knew the reason. THIS, I cant explain. I went in to talk to the nurse this morning as school started, and I gave her 18 packets of glucose tabs to provide to EVERY-SINGLE-DUTY-TEACHER. For the new PE teacher (who's husband is Type1!!) I provided a tube of sour gel liquid candy. I told the nurse that the PE teacher needs glucose GEL, in case Maddison wasn't able to chew or was unconscious from a low. The nurse responded by telling me "I'm sure that won't happen, I mean, she's walking around just fine in the 20's" to which I wanted to slap her. I'm sure she is trying to keep me sane and offering me words of "encouragement" but I didn't need to hear that. Why can't people just smile and agree?

26 today

Today started off weird. Maddison woke up when my 5:30am alarm went off, and before I knew it she was beside me stretching and exercising to the music while I was on the treadmill. Her BS was 190, but I had just corrected it before she woke up. Maddison had some "zoom" going on, she had so much energy I thought she was the energizer bunny! She was fine to eat breakfast and had a normal waffle with eggs and a drinkable yogurt. Today was early release, and a PE day. Maddison wore flip flops, so she thought she would have to sit out at PE and didn't bother going to check her blood sugar. It ended up that the teacher still let Maddison participate. 20 minutes into playing dodge ball, Maddison felt low. She got to the nurse's office to check and she was 68, about 2 hours after breakfast. (right as the insulin was "peaking") Maddison usually has about 6-8c before PE depending on what range she's in. Today she didn't have any, which didn't help the morning weirdness. So, the nurse gave 15c of juice (THANK GOODNESS!!) but at recheck 15 minutes later Maddison was 26.

TWENTY SIX!!!!26. TWENTY SIX!!! Now at a different time of day!! Imagine if the nurse didnt treat her 68 with 15c as I asked!! EXACTLY. WHY.I.FEEL.SO.OVERWHELMED. RIGHT. ABOUT. NOW. All week we have had an Aide watching Maddison eat her lunch. I really thought (for many reasons) that Maddison was tossing her lunch causing the after lunch lows. After today I'm back to trying to figure out lows based on activity/exercise. We have already started to bolus all lunch carbs after eating. Now...how do I decide what to do about activity lows? My mind has been running wild since last Fridays 20 number. RUNNING WILD. As in, I can't think of anything else. I just want Maddison to be safe! 26 is NOT SAFE!!

So, I have a headache. I have had for many days now. I can feel the weight upon my shoulders. I feel like Maddison has just been diagnosed all over again. I'm carrying the same despair, fear, confusion, desperation...heartache as I did those first months after diagnosis. This is all so scary, all over again. I cant sleep. I cant eat. All I can do is wonder if Maddison is doing all right at school. Wondering what I am doing wrong. Wondering what is going on inside that little body. Is she not absorbing the food she eats? WHY IS THIS HAPPENING? We have handled exercise the same way for nearly 3 years and we have NEVER EVER seen these lows. I'm heart broken for my Maddison. Thats all I can really say about all this.

MUCH better than I thought

My A1c is back, 6.5% which is so much lower than I expected considering I've been terribly off track.

I was a naughty patient and checked off Cpeptide on my lab slip. I wanted to see where my pancreas is at.....results showed 0.00, zero, nada. Bummer. Sometimes I really convince myself that this life wont be forever. I cant deny the numbers I guess. I also checked off T3 T4 and TSH because my Endo didnt this time around. My Thyroid continues to be "off" leaning towards Hyperthyroidism, but not enough to medicate. I bed to differ. There is a normal "range" for a reason....because everyone is different. Why do I have every symptom of hyperthyroidism with an "off" lab result and it isnt going to be treated? Hmmmmm....I'll have to do some research.

Foster birdy and school makes NO SENSE

Today Maddison was more excited than ever to go volunteer after school. Today Maddison got her first pet bird foster assignment! This Cockatiel is just a total sweetheart....she does a wolf whistle, gives kisses and LOVES her head to be rubbed! She thinks she belongs on your shoulder, and when she climbs up there she rubs her head against your cheek!

This pretty birdy has been lost for several weeks. The person that finally turned her over to the bird rescue hasn't been able to find her home. Surely someone is missing their dear friend.


School. School makes me cringe these days. I didn't make ANY changes to Maddison's insulin dosing for today. Not basals, not a ratio. Fridays 22 followed by an afternoon full of lows was totally and completely random. Random even though I've seen this same thing happen after lunch too many times this year. It doesn't make sense. Maddison was fine all weekend. I knew I couldn't make any changes, because I know something isn't right with those lows at school. I still dont know what it is. I've been wondering if Maddison really is throwing her lunch away and saying she eats it. I've talked to her several times about that, and again today, she assures me she brings back ALL uneaten food to the nurse for carb counting. Today she ate lunch in the nurses office. She started her morning a bit low at 78....then was
250's to 320's the remaining day. Imagine if I had reduced her ratio like I did before for these lows!

WHAT THE HECK IS THE RANDOM 20's AND 30's DOING AT SCHOOL!! For now, all we can do is bolus all food after eating. It just doesn't make any sense. I asked Maddison what she thinks is happening, and she says "her pancreas must be spitting out insulin sometimes causing the lows." I don't know. That's about all I can figure at this point too!

This morning I went to talk to the nurse as school started. I was immediately pulled inside for a lockdown. A real lockdown, again! Right as school was starting! A student reported a man with a gun at the park behind our school. We were in lockdown for over 45 minutes...so you can believe I had lots to say to the nurse. I asked about the 112 that was reported to me verbally by phone on Friday after Maddison's 22...that was REALLY recorded in her meter as 47......then 43.....then 58......no 112 to be seen. The nurse had nothing to say about the 112. All she said was that the aide reported that to her, and that's what she believed when she called me on Friday to tell me about the 22. -Sigh-

The nurse half listened to me this morning as she checked her email and I told her how we need to handle things from now on, always treating lows with 15c, NO MATTER WHAT. I also told her I want a phone call for every number, every day. I will talk to Maddison over the phone and we will do this Diabetes thing ourselves while she observes. I don't know what else to do! School last year = highs. School this year = NO SENSE at all!!

Nervous and I dont understand

It's Sunday night and I'm nervous for school tomorrow! I dont know where I need to start! Do I start with the Nurse? Do I start with the Principal? Do I start with a ratio change? Maddison's 22 on Friday at school has me a nervous wreck inside tonight! Isn't this another 3 day weekend? I really dont believe Maddison needs a ratio change. I think these random lows are recess and activity induced. I think we start with simply not bolusing until after Maddison eats.....I really dont want to start all over again tomorrow with the school. I really, really dont!

Another talk with the nurse. A talk with the aide. A talk with the principal, and a talk with the PE teacher. WHY does PE have to be tomorrow!!?? I'm so nervous, and it has NOTHING to do with talking to any of these people. I'm anxious and nervous over lows. I might just pull up a seat and stay at school again. I just dont know.

Today Maddison did something that I just don't understand. I'm really disappointed in her. Today Maddison was playing with her best buddy next door. It was time to check Maddison's sugar after breakfast, so I called and spoke to Maddison. I asked her to check and tell me how much insulin she had active from breakfast. She said she was 75 with .5 active. So, I sent Dad over with 3 glucose tabs. About two hours later, Maddison came home alone, saying she felt sick. She was 413.

That just didnt make sense. I can rely on her active insulin pretty well lately to tell how many carbs she will need to avoid a low, especially if she was really 75. I asked Maddison to see her meter. When I called her earlier and she checked, she was 225 not 75. There is was recorded in the meter as her last check. Why did she lie and say she was 75 if she was really 225? I asked Maddison why she lied, and she immediately began crying. She said she just wanted to eat the glucose tabs, and then she said they were running around alot so she thought she would need them. I dont understand. We have never had any issues like this. All I could do was tell her I appreciate her being honest, and explain that now she feels sick because she hurt herself by taking sugar when she didnt need too. She was sincere in her apology, but I'm still crushed. I dont believe they were running around alot, maybe they were.....I think she really just wanted the damn glucose tabs. I just dont understand why she would do that. She knows I ALWAYS look over meter numbers in the end of the day. She knew I would catch the lie. So why did she do that, and why didnt she care about hurting herself with sugar? Did she really think she would need the tabs and she's afraid of lows? Did she think she needed the tabs becuase at school she crashes after lunch from activity? I just dont know anymore. This is all starting to be more than just a number. So much more than just a number.

I'm nervous. I just dont understand. I'm mentally exhausted. I'm tired of going around and around at school with lows, highs and a nurse that doesn't take my direction. I'm just tired of this damn disease. I'm tired of being nervous when Maddison is at school. TIRED.

Diabetes in the books

The other day we made our usual weekly trip to the library. Maddison easily finds 10or 15 books she's interested in. Hannah, is at a tough age, not so many good finds at the library for her lately it seems. I don't normally do much reading (except on the internet!) because if I sit down with a book my eyeballs start rolling around and I just want to go to sleep. At that point, I might as well because I have to read every sentence a hundred times to actually understand it! So anyway, I decided to get some books on nutrition, strength training and such since I need a reminder of how poor my eating habits have been lately.

The good news is, the way I **used to eat** is exactly what is written all over in this book. For the record, I don't believe in "diets" and I have no intention of "dieting" to lose this extra weight. I simply need to get back to my old healthy ways, and I will. I've started to, and, I feel better already. So, the book I am reading (or flipping through) is the "Abs Diet for Women." So much in this book in regards to nutrition, to me, is common sense. I'm pretty sure that comes from the fact that I was raised in a family that followed my Dads Diabetes "diet." We didn't drink soda (until the teen years anyway) and we didn't eat alot of processed foods. Breakfast, lunch and dinner was always fresh foods and fast food was just a Saturday thing. Most importantly, we always had to eat our fruit and veggies before snacking. I already have nutrition covered.

As you know, where there is talk about nutrition, there is also talk about Diabetes. Of course there is never a mention of Type 2 Diabetes. Just the label, Diabetes. Reading this book tonight, I just wanted to SCREAM. I wanted to CRY. I wanted to take the local news station hostage and conduct my own PSA!!! I cannot count how many times this book said "Diabetes is a preventable disease" or "bad eating habits, over eating and lack of exercise results in Diabetes." Seriously....I really just wanted to burn this book to pieces because all the Diabetes bashing. No wonder people are so damn confused about Diabetes. Everywhere you read, Diabetes is mentioned WITHOUT specifying a type. That really just makes me sick. I HATE HATE HATE that people think we have this disease because we have "caused it" by poor eating habits. I HATE HATE HATE that people think my daughters disease is as easy as eating properly, and HATE HATE HATE that people think we can reverse this disease if we would just get control of our eating habits. I hate it. And, I want it to stop. Can't we change the name of this disease to something like...

Autoimmune beta cell destruction disorder
Autoimmune pancreatic failure
Stupid freaking pancreas doesn't work disease

Really. Sometimes I just cant read anymore.

22

I dont know WHY she waited an hour to call me. I dont know WHY she doesn't follow the low treatment protocol, its there in the 504. Its written plain as day. We just went through the low protocol a few weeks back. And, once again, I dont know WHY she doesnt believe the meter when a number is under 30. Why is there another number under 30!!!??? School nurse!! Tell me why there is another number under 30 that you treated like it was a false reading!! WHY!!!!!??????

The last two days, Maddison has been 200-380's at school. I didnt make ANY changes to basals or ratios for today. I planned to watch and see what today brought. Good thing I didn't change anything for the highs. Today Maddison was 22 an hour and 15min after lunch. TWENTY TWO. I never got a call. When the nurse called me an hour AFTER the 22 this is how our conversation went......

"Hi, Maddison's having some weird lows again today. It started with a 22 that couldnt have been right. That number must have been wrong from water on her hands after washing them. So, we re-checked and she was 112."

BUT GUESS WHAT!!!???? The regular RN called me today, even though SHE WASNT THE NURSE TREATING MADDISON TODAY!! THE AIDE WAS, AND THAT NUMBER AFTER THE 22 WAS NOT 112.......LOOKING THROUGH THE METER AT SCHOOL I FOUND IT WAS 47!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I DONT KNOW WHERE SHE GOT THE 112, BUT THERE WAS NOT A 112 TODAY!!!!!!!!!!!!!!!!!!!I WAS GIVEN UNTRUE INFORMATION!!!

SO, Maddison's numbers went like this....

930am 122
11:15am 155 lunch
12:28pm 22 YES THATS ANOTHER TWENTY TWO!!!! Nurse says it wasnt valid.

12:29pm 47 rechecked to verify the low. 22, 47.....thats close enough variance to treat it as a VALID 22 wouldnt you think!!!!!!!???? She took the 47 and gave 8c.

12:54pm 43 8c

1:10pm 58 3c THREE CARBS!!!???

1:30pm 78 6c

2pm By this time, I was AT the school picking Maddison up. The regular nurse is in teaching drug awareness classes to 6th grade all day and took Maddison with her to watch the lows so the Aide didnt have to worry about them. I walked into the classroom and snatched my girl OUT OF THERE.

I'm so ticked off, I dont know what to think. Of course, the 22 isnt the Nurse's fault. BUT, treating a 22 like it wasn't valid and treating 40's TWICE with just 8c IS a fault. THIS IS MY CHILDS LIFE HERE!!! I dont understand. I just dont understand!! We have talked about THIS! Just a few weeks ago we talked about THIS!!!

I'm actually kind of numb this time! I just can't believe that the nurse SERIOUSLY didnt believe the 22 AGAIN, and only treated it with 8c!!!! So, whats next? Maddison has a seizure at school and she forgets about the Glucagon? I am SCARED TO DEATH to leave my child at school knowing my direction is not being taken!!!! How does a 22 happen after a week of highs? Where do we go from here?

This week

Diabetes isn't cooperating a bit this week for Maddison, a big mess of randomness. Maddison's not herself this week because of it. I dont know if Maddison's just feeling icky from the randomness and so many highs, or if an icky germ of some sorts is causing the highs. She's tired all day. Quiet. Dark circles. Headaches. Stomach aches. Grumpy. Emotional. Class work is starting to show it. -Sigh- I'm really sad for my Maddison today. I miss her zooming around feeling good. I miss her silliness. She isnt any of that this week. Damn Diabetes.

Found it!

I've been looking everywhere for Maddison's poem entry to the 2009 "Inspired by Diabetes" campaign/competition from earlier this year. I FOUND IT!!! I was certain that this years poem would earn Maddison at least another 3rd place, if not a
1st place in the poetry competition for her age group. Many months ago the winners were chosen and we never heard a thing, so, no placement this year. I thought this poem was exceptional compared to Maddison's 3rd place winner last year. One things for sure, this poem is 1st place to me. I couldn't believe her choice of words when she quickly jotted down her submission in about 2 minutes flat. In this poem she says she was thinking of how one day she knows there will be a cure. Here it is.....

Be Strong


Behind this door
there is a flicker of light
a chance to break free

it is a reason to love
a song undiscovered
a day to live unscared
a day protected

It is a river of freedom
a path to freedom
BE STRONG

-Maddison age 8

CANCELLED

My confession....Last week I cancelled my Endo appointment that was scheduled for tomorrow. First, before you get ticked off at me, let me say that my last A1c was 6.2and the one prior to that was 6.0.....and that’s the truth. I'm not even exaggerating those numbers at all. Not to bad considering my A1c at diagnosis was 13%!! I know, I am very "lucky" for an A1c in the 6 range, but honestly, all my past A1c’s have been without much effort. (I’m also a honeymooner per dosage standards, still after 3 years so that would explain it!) I just bolus, square wave, dual wave, count what I eat to "perfection" and limit eating to 150c or less a day, limit sweets, eats lots of protein, adjust basals when needed, exercise, check blood sugar 12 times a day, and I’m good to go. Is that effortless? Well...now that I think about it, that’s a lot of effort!! Over the past 6 months or so I haven’t given ANY effort. At all. And THAT’S the reason I cancelled my appointment!

Ok, that’s not the entire reason. Reason #2 is that I DON’T want to get on that scale!!! At my last appointment (6 months ago) my eating habits had just started to go downhill and I hadn’t excercised for many months. I had gained 3lbs. Well, my Endo is a TINY little thing, seriously, if she weighs 100 lbs I would be shocked. Maybe she has a medical issue, I don’t know...but she doesn’t look healthy. Guess what she did? She lectured me for gaining 3lbs. LECTURED ME!!!I seriously went from 118lbs to 121 lbs, and if you didnt notice, I am female AND I get some serious PMS!! AND SHE LECTURED ME!!! To date, I have gained about 8 more pounds, and let me tell ya, I feel HORRIBLE about it. I think if I went in to that office and had to listen to her lecture me I would break down and cry!! I don’t need that! I know what to do, I just need to DO IT! Endo’s don’t provide motivation or energy to manage this disease, and they certainly can’t take away this BURN OUT I’ve been facing. If they did, I wouldn’t have cancelled my appointment.

Another thing that I'm hiding from.....my Endo thinks she can perfect a 120-130 waking number. Yep. At my last appointment this Endo did mention that my A1c was "great" but then she went on to ask WHY I wake up so high in the 120's to 130's. As much as I wanted to scream BECAUSE I DO ALL THE FRICKING WORK FOR MY STUPID PANCREAS, I didnt. :) She then proceeded to tell me that I need to get that waking number down to the 90 range. Um, Sure. I COULD....BUT, how many basal experiments will cause me to wake up low? No thanks. I'll take the 120's to 130's!! I also tried to explain to her that because I wake up at midnight and 3am most nights to be Maddison's pancreas, my waking number will just have to suffer. She disagreed, and then we argued over the importance until I finally listened to her "instruction" and said that YES, I will work on my morning number. I understand her concern....but I mean really! 99% of the time I woke up perfectly between 120 and 130....and she wants to pick on me for that? 6.2 lady! SIX POINT TWO!! I can only imagine what she'd say to me now. No thanks! CANCELLED!!

Reason #3 for cancelling my appointment? Well, that’s obvious. I’m scared to DEATH of what my A1c is. I don’t need to see my A1c, hear it, or be reminded that I am hurting myself because I am being lazy. Nope. I sure don’t. I know very well that I’ve been slacking lately. I know what I have to do. And I WILL do it. Also, I must say, I am bolusing, and I am adjusting basals when I can. For awhile I was only testing about 4-5 times a day. Is that effortless? In comparison to the normal me, I suppose it is. How dare I? The main thing is my eating habits, or lack of, I should say. I just eat. I eat alot, and I will eat anything! I also "guesstimate" instead of measuring and counting. Exercise? Silly.....I’m too tired to get up early for that! My meter average currently shows 154 over 30 days. I can only wish Maddison’s were close to that number! But, true, if I’m testing less, eating crap and not exercising, chances are that 152 isnt even close to accurate. I rarely used to hit a number over 160…..now I hit 180-220’s almost every day. ACK! I’m thinking my a1c will be around....7.5% Should I be ashamed of that just because I know I can do better? Its just a number anyway right? I know with some effort I can do so much better than whatever my A1c is gonna be. And, I will. But if this "honeymoon" ends I cant make any promises that I will remain in the 6's. But, I'm back to giving a little more effort, and thats all that matters.

Oh, and reason #4 for cancelling? My appointment was scheduled for 11am. Smack right in the middle of the day. I’d have to take a day off work just to go. Sorry, not gonna happen after all the work I’ve missed since school started. Darn strep throat!

The good news is, I’ve committed to waking up early every day to exercise. I've done so now for the past week. Exercise will equal better eating habits and the ball will just keep rolling from there. I also went to get my labs drawn on Monday, so, I guess I’m not entirely hiding from the truth. I’m actually kinda interested to see what so much less effort did to my A1c. I’m moving forward now, and not looking back. I guess thats all that matters. I will keep telling myself that!

She's a funny one, HUNGER AND Testing too much!

Today when I picked up Maddison from school she was SO happy to tell me that the school is nearing closure. Apparently, Maddison overheard a conversation the nurse was having with the Principal.....Maddison says that they were adding up numbers of absent children today and she heard them discussing that when they reach 400 kids absent with flu type illness, the school will close for what she called "germ cleaning." Maddison says there were just over 200 kids out today and she wished she were one of them. Funny things kids say! Maddison really dislikes school, can you tell?

Lately Maddison has been crazy hungry! She eats and then an hour later she says she is "starving." Maddison has never been a big eater, so this is all pretty new. We always balance her eating with protein, but lately NOTHING seems to help. Lows sometimes equal hunger of course, so we have been testing when she is "starving" to see if hunger means low. Maddison eats a snack at 2pm on school days, and by the time she gets home an hour later she is "STARVING." So, today I gave her some turkey and cheese with goldfish crackers. An hour later on the dot, "SHES STARVING" I just dont know what the deal is. An hour later- STARVING. I kid you not. Every hour on the dot. Growing I suppose.....it would help if she had a fruit or veggie in there for meals and snacks, but that isnt happening if you know my Maddison. Or unless your name is broccoli-tips ONLY. I just dont know what to do to help her feel better, I'm hoping it isnt wild swings in blood sugar causing the hunger!

Testing, testing.....lets see.....15 times a day? That sounds about right. That sounds just about ridiculous too! The first month of school we were doing so well! Looks like this year is starting to be a repeat of school years past. I just dont understand! Today Maddison tested an additional 4 times at school for feeling low. Her day looked like this:

8am 160 (1hr PP) FELT LOW
9:34am 60 Here's the drop, I need to change that basal back!
9:51am 138
11am 118 (going to lunch)
1pm 137
2pm 136 snacktime
2:20pm 147 FELT LOW
3:14pm home from school FELT LOW

Thats testing 7 times in a 7 hour school day!!!!!! This has been a common testing routine at school. (the nurse comes to Maddison to test) This doesnt happen every day, but often. So, I asked Maddison what these lows feel like that are causing her to test. She said she feels "like she is floating on a cloud." I'm sure she does.....but why? I know sometimes when I'm around the 180's I feel "high" as in "high" like you would think "high" feels like! (not that I know what that feels like :)Lately Maddison has also been complaining of feeling "weak." Could she be anemic? She looks pale to me lately too. Shortness of breath.....her labs were all fine a few months back....maybe a Thyroid issue is looming? Holy moly, weakness, anemia.......that could equal Celiac too couldn't it? What the heck is going on? We can't possibly be testing her this often every day! Her poor little fingers! I wonder if she's testing so much becasue she is fearful of lows after all the scary one's she's had at school this year? I wonder if she's spiking and dropping from one extreme to the other causing her to feel this way? I'm not sure what to do next. I hate wondering if the other symptoms are "D" related or if another autoimmune attack is happening causing these weird symptoms. How can we stop this testing too much!!??

Zoom Zoom and Khristen

Did I mention the other day that I slept until 11:30am Sunday morning without the kids waking me up? Yep! Maddison's last blood sugar check was at 3am and then I slept until 11:30am STRAIGHT!!! I guess that new computer game Aunt Christie bought the girls is good for my sleep! Maddison was on the low side (70) by the time I popped out of bed freaking out about the time...but WOWIE WOW! I needed that sleep! Guess what? TODAY I SLEPT UNTIL 10am!! (last BS check was at 3am) Two whole days of great sleep? YAY for a no school Monday!

What did catching up on sleep equal today? I was back to ME, back to the normal zoom zoomer I used to be. Lately I've had to drag myself to get anything done around here. Not today! Floors were vacuumed and double mopped (3 dogs in the house!!) Dusting, I made a nice breakfast for the kids, dishes, laundry, dinner in the crock pot, cleaned the pool, trimmed the overgrown bushes surrounding the pool, cleaned the patio (can you say dog hair and dirt?) took Maddison to Home depot to pick out the rest of the garden goods, weeded the garden, planted the garden,(that sounds SO much easier than it really is!)I helped Maddison clean the aviary, bathed 3 nasty dogs, made lunch, did more dishes, cleaned the garage.....one of THOSE days :) I feel so much better. No wonder I've gained so much weight! I dont zoom anymore!!! I swear I used to burn about 500 extra calories a day just being a zoomer. A little bit of catching up on sleep this long weekend brought back my zoom! Now I just hope my zoom will stay for awhile. Amazing what a little sleep can do.

I must also say, that last night Hannah had her friend Khristen sleep over. Khristen is 11 and we know her family from our support group. Her Dad was dx'd with Diabetes back in the day at age 10 and Khristen was dx'd at age 6, just like Maddison. We LOVE LOVE LOVE this family. Khristen's mom is the nicest person I think I have ever met. Khristen also has two brothers that I think are just the most polite and respectful boys!! Khristen's brothers even spend the night sometimes after we all hang out as families, they are great friends to Maddison too. Anyway.....in my eyes, Khristen is just the "ideal" role model for Maddison. She's always so on top of caring for her Diabetes. Of course, sometimes I have to ask her if she checked her blood sugar, but otherwise, she takes the lead and doesn't need any prompting. I can only hope that Maddison cares for herself in the(near) future the way Khristen does for herself. Khristen is a crazy accurate carb counter. She is WAY better than I am in math! (Thats embarrasing!) Khristen is still on shots, which means she can convert her ratio from carbs in a flat second PLUS add in the correction if needed. ( I need a calculator for that!) I am SO proud of Khristen. And guess what? Khristen is starting on a pump tomorrow!!! When Khristen told me this today she just looked SO happy! I literally had tears filling up my eyes and I couldn't help but hug her tight! Khristen has wanted a pump for as long as I have known her. After 5 years on shots I hope the pump transition is good to her!

Gotta love a 3 day weekend

Another great weekend with fabulous weather! Can you believe its still 90 degrees in AZ? Funny that for us Arizonians 90's is considered perfect weather for trips to the zoo, hiking, long evening walks and such. This time of year is exactly why so many stay here despite the killer summers.

Friday night the girls played outside with all the neighbor kids pretty late while parents enjoyed the weather and some wine. Apparently, I over did my before bed snack (because of the wine) and ended up in the 380's until morning. I can't/wont give corrections in full after a glass of wine (or two) but.....I was SHOCKED to see I was STILL 380's upon waking Saturday morning. WOW. I guess I should have measured that ice cream "snack" I had before bed! I cant tell ya the last time I had a 380.....I FELT LIKE DEATH. Every muscle ached, my mouth was dry, even my eyes were buring from being so dry! Headache, foggy brain......ACK.

380 would have been a GREAT excuse to sleep in, but the girls were going to Aunt Christie's while I headed off to a Diabetes seminar at Phx Childrens Hospital with my dear friend Wendy. I really thought I would walk away from this seminar with a wealth of information and renewed hope for the future. Not so. The program was 4 hours of basics. No update on current studies or advancements in technology. Just the basics. What a bummer. BUT, I think it was a great class for the newer Diabetes crowd. Most importantly, I got to spend time away from the mommy grind while the girls were having some dairy farm fun with Auntie. Even Hannah enjoyed the trip to see the dairy farm, and she LOVED the fresh ice cream!

After the seminar Wendy and I got to chat over a nice long lunch! I havent gone out on my own without kids in FOREVER!! It was SO nice! Although I still had foggy brain and felt low all day after being so high all night (I was in the 150's all day) it was a great day regardless of how I felt physically. The wrath of 380's really linger even if numbers are good! Maddison's numbers were FANTABULOUS all day Saturday. A huge plus!

Maddison's numbers have been awesome all day today as well, except she's still complaining of headaches, stomach aches and now dizziness. -Sigh- I'm thinking I might just take her to a GI doctor afterall. Why would a nine year old have so many headaches and tummy aches? Tummy aches come right after eating. Headaches linger all day. Poor Maddie.

Tomorrow.....NO SCHOOL!! YAY!! I think we will be off to the park for some more fishing. I have to go in and get my 6 month labs drawn. I dont even want to know. It is what it is of course, but I dont want to see how lazy I've been! Maybe my terrible a1c will be motivating. Who knows. No worries, its a happy long weekend!!

Hmmmm.....

I saw this posted on CWD. It doesnt make me feel so good since Hannah's A1c was 5.5%a few weeks ago. She's fine. I know. I guess I should be sleeping and not reading all this stuff online! ACK!

Normal human glucose levels: 4.3 - 5.5 % (70 - 108 mg/dl)

Note: any elevation in mean blood glucose concentration above 5.5% (108 mg/dl) should be explained by a physician.

A1c level of 5.6 - 5.9%: The individual level of mean blood glucose has exceeded the normal upper limit of the assay range, indicating an abnormality in the expected normal human range. While this level is not recognized by the ADA as diagnostic of diabetes, it does signal a level that may be indicative of impaired glucose tolerance (IGT) and/or pre-diabetes.

Anyone with an A1c in this range should seek medical attention to determine the cause of the elevation in mean blood glucose. This is an important early warning sign that could prevent an individual from becoming diabetic if caught early. Often, diet and/or exercise may reverse and/or reduce the A1c level back to within normal range.

Just one day

THIS one day has been a total relief, Maddison stayed beween 110 and 170 ALL day. Ohhhhhh what ONE day of good numbers can do for a Moms soul!! Highs started two days ago, and they ended today. I flipped Maddison's basals back to what they used to be before lows. It worked! WOW. Tonight I will sleep better because of it.

Sometimes ONE day of progress is all you need to see the light again. One day to see Maddison feeling good without lows or highs does SO much. One day to pick myself back up. One day helps me to prepare mentally for anything that lies ahead. Ohhhh sweet victory.

Todays excuse......

Today's excuse for Maddie's 302 after breakfast......Ummmmm.....The field trip! Yep! The excitement from today's field trip caused Maddison's terrible high. Yep. It sure DIDNT!!! Looks like somethings going on. Imagine that. Dark circles? Yep. Corrections not budging even overnight? Yep. Here we go again.

Lets say goodbye to the lows and hello to the highs. Damn you Diabetes! Can't my Maddison just get a break? Looks like we have the flu in the neighborhood. 6 kids from Maddison's class missed the field trip today for the "flu" and Maddison's best friend across the street has it seriously invading their house. Full blown fevers, chills, coughs, stomach....you name it....its all around us. It just so happens Maddison played over at her best buddies house for many hours this past weekend.......Funny, I think I can see it in her numbers already!! Not so funny, actually!

UGH. Here we go again. If there was ANYTHING I wanted people to know about Diabetes it would be that it NEVER, EVER STAYS THE SAME. It NEVER, EVER gets easier. Sure, we learn more and manage better.....but having the disease itself never really gets easier. It just disappears sometimes, and then comes back to kick you in the arse for awhile. Never fails.

Long night ahead. Now, I wonder how I can stop hitting snooze? Actually, now I'm just turning the alarm off and falling back to sleep. Not good. Its become a VERY bad habit. So much so that last night I only checked Maddison once at 2am. Even though she went to bed at a nice 146, she ended up at 202 by 2am. I corrected, set my alarm for two hours later and then never got back up until morning when I was supposed to!! She was still high. Which, means she started her day too high at 236. I've been kicking myself for that all day, calling myself all kinds of names, like loser and neglectful. Add that to the list of what I want people to know...Diabetes NEVER sleeps....AND, its a horrible guilt trip if a disease!!

Time to adjust some serious basals!

Darn syrup!

I really like to blame low and high blood sugars on something that would make sense. It makes me feel SO much better, so much less responsible, and so much less confused. Yep. I like to blame all sorts of things when Diabetes goes bonkers. I dont like saying those whacked out numbers "just are" for I will always and forever search for the REASON. Lets see.....yesterday Maddison's low was because of over bolused juice. Yep, that could be. Lets blame the over bolus. Never mind the fact that Maddison has had many lows at this same time of day spread out randomly over 5 weeks. Yep. Forget that. Yesterday it was the overbolus. There. Now I feel better!

So today....lets blame the Syrup. Damn you syrup! Maddison was 344 2hrs PP today. OUCH. Today we ran out of our normal 13c SF syrup. Hidden in the back of the pantry I found THIS......



Maddison LOVES this syrup. But, I can tell you from MUCH experience that this syrup is the devil on blood sugar for Maddison, regardless of it saying 1/4c has 4c. Yep, this syrup was HIDDEN in the back of the pantry for a reason. I never figured out what to bolus for it, even after much experimenting months ago. So, HIDDEN it will stay. Heck, after Maddison was 344 today I might just trash it! Funny how some foods just arent what they say!

Sure, maybe it wasn't the syrup that caused Maddison's 344 after breakfast, but I definitely feel better finding a "reason." Of course, with all the weeks past of lows I increased Maddison's correction factor from 220 to 280....so do ya think she ever came down into range today with that newer correction factor? Nope. 344, 314, 299, 249......ACK. Today, lets blame the syrup. Tomorrow.....who knows! When will Diabetes take the back seat again?!!

Good news, my basal rates are set well! Upon arriving at work today I checked my blood sugar. 124. I corrected.....then I see 0.00 units left in the pump resevoir. WHAT!!?? UMMMMMMM.....WHY didnt the pump ever alarm to tell me I was OUT of insulin!!?? Now I'm 30 miles away with NO INSULIN!!! Good time for a basal test I guess!! I suppose I had enough insulin in the tubing to get me through my day, my BS never went up past the 124. 6hours later and time to go home, I was 102. I guess there is always SOME good news. But geez, Diabetes is just a pain in the A$$ lately!!

Yesterdays post/Ratio's set in the pump

I've had several questions left about yesterdays post when I mentioned Maddison was bolused the wrong ratio at school. How does that happen? Well, Maddison and I both have a MM pump. When setting up the ratio's in the pump, you program by hour. So, at 6am Maddison's pump is programmed for a 1:13 ratio for her first meal of the day, which we all know, usually requires more insulin than other meals of the day. That 1:13 ratio does not change until her lunch meal, because normally Maddison does not have an after breakfast snack before lunch. So, at 1030am Maddison's pump ratio is programmed to change to 1:25 and dose accordingly. Yesterday Maddison had juice bolused by the nurse at 9:45, which means, that time of day the ratio in the pump was still 1:13, which means she was overdosed for the juice. Make sense?

Maddison's 1:13 ratio is ONLY for that first meal of the day. Shouldnt I change the time of ratio change in the pump? Maybe. BUT, Maddison should not be having bolused snacks before lunch at school anyway. She wont starve to death from 8-11am!! Yesterday was an unusual day that the nurse gave a snack because it was a PE day. The reason Maddison's pump isnt programmed to change ratio's until 1030am is because on weekends Maddison may not eat breakfast until 9 or 10 am. Therefore, the pump is set around ratio's times that works for us weekdays AND weekends. Do I really want to change ratio times for school and weekends? I'm thinking I would probably forget half the time. Its better off leaving as is, assuming Maddison isnt eating a snack at school. The nurse knows to call me if she is in the future.

Fingers crossed for today. My long drive to work this morning meant I had too much time to second guess changes I made for today! I hate when I second guess! I'm planning to take today one number at a time, thanks to our nurse who will email me each number. If Maddison still comes in lower around lunch I will have the nurse reduce her lunch bolus. This is week 5 of craziness in numbers. I'm just about done playing nice!!

I can't tell what is what!

This weekend was fun filled, yet chaotic. Hannah's school volleyball team participated in "Spike Fest" a Vball tournament for our school district on Friday night for 4 hours and then again Saturday ALL day, 12 hours total. WHEW. Thats alot of Volleyball! Talk about Maddison getting bored! Our school team is a major downer, a big difference from playing "club" volleyball!! I just couldnt watch the games without my blood pressure(and probably blood sugar) exploding from the stress of watching our team play so poorly. Our team was a mess. Oh well, "club" tryouts are coming soon, so Hannah will be back to training with a great team soon before we know it.

Maddison ran in the 180's- 230's all day Saturday after eating so much junk being stuck at Volleyball for so many hours. Thats called, no progress on figuring out numbers :( Yesterday on Sunday Maddison was in range all day until the kids chose to take a late night "swim." Yes, swim. October 4th and the kids insisted the pool was warm enough. I'm guessing the water is now down to around 75 or so, thats COLD for us Arizonians! Their "swim" lasted about 1 minute flat. Two hours later, Maddison was 409. I think we forgot to prime insulin before re-attaching the pump. For some reason, everytime Maddison takes her pump off the insulin pulls back into the tubing leaving a line of bubbles. I dont think the pump should do that!

Back to school today I had NO IDEA what to expect from numbers. I hate Mondays. Monday tends to set the tone for what Diabetes will do THIS week. Of course today was a PE day too, PE is scheduled right when Maddison's breakfast insulin is peaking. FABULOUS. One more variable. WONKY comes in today because the nurse is doing so many WEIRD things, I can't tell what is what!! Today I'm REALLY frustrated. Juice, a snack, PE, bolused the wrong ratio. How the HELL do I actually know what adjustments need to be made when Maddison's snacking and being bolused with the wrong ratio?

8:50am Maddison is 169 2hrs PP w/ .8 active (Nurse gave 15c juice just because she felt like it)

9:32am After PE Maddison was 139 w/.5 active (Good thing the nurse gave 15c of juice earlier!) Maddison "wanted" more juice, so the nurse let her have ANOTHER juice!!!! She bolused 15c for the juice, using the WRONG 1:13 breakfast ratio instead of the correct 1:25 ratio for AFTER breakfast eating. Also gave 6c PB crackers unbolused. Now.....lets see. Maddison was 139 with .5 active.....she technically shouldnt have been bolused for that juice, and yet it was ALSO the wrong ratio. Seems to me this is where the problem started, even though you wont see the low until after lunch.

11am lunchtime, Maddison was 182 with .3 active, which if I go by my knowledge, means Maddison would be too low by the time the .3 wears off. (Her daytime ISF is 280right now) SO, does this mean the WRONG snack bolus actually caused the low later after lunch? I'm thinking so!!! No wonder Maddison was 42 just 1.5 hours after lunch! I wonder what tomorrow will bring? My orders for tomorrow? No juice because Maddison's thirsty, and no eating just because she's hungry. She wont starve to death from breakfast to lunch! I cant tell what the hell is going on when Maddison's getting juice and snacks every hour! Of course, if Maddison comes in low tomorrow we just LATHER*RINSE*REPEAT the same damn chaos.

Sometimes the numbers run together. Sometimes you just can't tell what is what. Last year we dealt with crazy highs when school started, this year, its crazy lows. I've begun to wonder if Diabetes was "easier" back in the day. No multiple shots, and certainly no different ratios for different times of day. No 15 finger pokes a day. No "micromanaging" with expectations that drive a parent crazy. Good range was considered anything under 200, today we strive for under 130. There wasn't any eating whatever and whenever you want. I know for ME, I would lose a couple pounds AND have less highs if I wasn't able to just push a button and bolus for whatever I want. Of course we are fortunate to have these types of advancements in managing Diabetes. Sometimes, though, I just wonder. Its an awful lot of work, still, without promises.

IEP Meeting, Shocking as Always!

Within the first few minutes of our IEP meeting the other day, I was SHOCKED. SHOCKED. SHOCKED. Maddison is "no longer eligible" for an IEP, per Maddison's case manager. This is based on the fact that Maddison is no longer in need of any "services" for her "emotional disturbances" in school, related to her Diabetes. Say what? What emotional disturbances? Ohhhhh.....where to start.

Basically, our school wants to transition Maddison from her IEP to a 504 because her Psych reviews this year is expected to show that her "emotional disturbances" have apparently vanished off the face of the planet. Hmmm....maybe that has to do with the fact that her teacher this year is capable? Caring? Doesn't humiliate her in front of the class? FIRST, let me say, I was completely thrown off by Maddison being labeled as an "Emotionally Disturbed" child. The criteria for "ED" is this:

(A) An inability to learn that cannot be explained by intellectual, sensory, or health factors.

(B) An inability to build or maintain satisfactory interpersonal relationships with peers and teachers.

(C) Inappropriate types of behavior or feelings under normal circumstances.

(D) A general pervasive mood of unhappiness or depression.

(E) A tendency to develop physical symptoms or fears associated with personal or school problems.

Ummmm, yes this WAS Maddison for a short time last year. But....Ummmm.....NO. Maddison is not an ED child!! She was a child that had a CRAZY teacher that made her feel like a nuisance to the class!!! I could explain all day. I wont. Last year was HARD for Maddison. It wasn't HER issue, but how her teacher and tough times with Diabetes made her FEEl.

Oh MY. MY understanding last year when Maddison qualified for an IEP was that she qualified because she was considered "at risk" for falling behind in class because of her Diabetes affecting cognitive learning ability and missed class time affects her ability to complete all assignments timely. Isnt that why she would be eligible for an IEP? WELL.... only one area of extensive testing (last year) showed Maddison struggling academically, so, we proceeded to write the IEP for OHI, with OHI being Diabetes of course. Or, so I thought! The IEP was written around Maddison's Psych testing results which showed her to be "at risk for "ED"!!!!!!! OH MY GOSH!!! I HAD NO IDEA!!!

"ED" is NOT what I thought Maddison's IEP was built around. I thought it was built around the simple fact that she is OHI and needs an INDIVIDUAL EDUCATION PLAN!! Because Maddison is no longer in need of "ED" intervention (or any other "services) she is no longer "eligible" for an IEP. Of course, now she must have all the academic and Psych testing re-evaluated before this is final, BUT, this is what Maddison's case manager is telling me. I beg to differ, and I WILL fight to the death on this. As always. Gotta love us D moms :)

It takes a team

Thank you school nurse for consulting me FIRST in these crazy times of lows for Maddison!! THANK YOU!! We are a team. It takes a team to manage Diabetes. An entire TEAM. Mom, Dad, siblings, neighbors, friends....we are all needed to catch Maddison's lows before they become scary, for sometimes she can't lately it seems! Is this what I get for turning down the CGM? LOWS? Scary lows? PLEASE don't make me have to decide between keeping my child safe and keeping her happy. She doesn't want a CGM. I dont either. Isn't it enough to see her attached to a pump every day? I don't want another device attached to my childs body! PLEASE! Enough with the lows!!

I've always said when the time comes and Maddison's Diabetes isnt "easily" managed
anymore I will consider the CGM....I really HOPE this isnt the time!!

The past two days Maddison hasn't had any lows. She has been high because the new ratio and sensitivity changes. I've been over riding the pump suggestion for corrections of highs and dosing far less than the norm, knowing she will drop. About a month ago before all this craziness, I was thinking to myself how AWESOME it is that everything is set "just right" for Maddison Diabetes. You bolused, she ended up under 130 without going low. That never lasts long does it? I guess THIS is what I get for thinking.

Maddison felt low at 8:10am this morning, thats just an hour and a half after breakfast. She was 307. Two hours later she was 40. FORTY. Maddison woke up high this morning after I under corrected highs all night as I have been doing. What worked yesterday, didnt work last night. Who would have known? If the pump suggested .4 for the high, I dosed a .2 instead. Then this morning I correct a 248 with the same HALF dose and she's 40 3hrs PP!!?? Make up your freaking mind DIABETES! I'm DONE with you being this way!!

What would I do without our school nurse? She called after Maddison's low to ask many questions today, I think she is seeing that this is a weird spell, not just Mom being clueless on how to make changes to stop the craziness. I explained how to over ride the pump suggestions. I explained my theories. I've explained WHY we bolus back some of the low carbs after she is stable at a higher number. (in this case she was 3hrs PP) We are a team. I appreciate her interest in this craziness, especially since I'm feeling entirely defeated right about now. Two high days. One LOW day. One good day, one LOW day. Three high days. One low day. TWENTY TWO!! WHAT AM I SUPPOSED TO BE DOING!!??

The nurse is calling back at lunch to give me Maddison's number and I will give direction, because.....Guess what I did for the first time as of today? Turned Maddison's ratio BACK to 1:25 as it should be, because she has been HIGH the past 3 days after lunch! So, now I'm worried!! Going back to the "normal" ratio today after a 40 this morning!!?? NO!!! Its already programmed in the pump to dose that old ratio as of 11am today!!! I'm gonna have to make a split minute decision over the phone for lunch dosing today. THIS IS MY CHILDS LIFE YOU STUPID DISEASE!!! Make a split second decision that affects my childs life??!!! Her well being!!?? Her health!!!?? MY HEALTH!! My mental sanity!! Probably my blood pressure! I HATE this!!!