Sunday, December 30, 2007

Open mouth insert foot

Great night of numbers last night! Stayed from 130-150 all night. What relief! The problem? 34 after breakfast with 1.5 active this morning.......ERRRRR. Just when I was saying in my last post how numbers don't bother me so much anymore, deal with it, move on.....well, scratch that! Not today! I am so pissed! I cried, I screamed in my pillow. Every time I talk about something good doomsday begins. Why the hell does it happen that way?

To see a 34 on the meter makes you instantly blurt out something like "Oh shit!" or worse. To see your little girl pale, shaking and looking right through you.....makes you literally sick. It scares the hell out of you. pisses you off. It is like someone teasing or taunting your kid at school. It is like someone saying something bad about your child that isn't true. It enrages you. Diabetes is when things like this 34 slap you in the face. I don't think people realize my 7yr olds life was just threatened. She could have had a seizure. She did nothing wrong. But, I sure feel like I did. I am in control of her body, and I failed her-again. Somehow I fucked up, not intentionally...but I did. I am so angry right now I could just crawl in bed all day. Shut down. But we don't. We carry this with us all day. And we still have to smile and pretend 34 didn't leave its mark. But it does.

Friday, December 28, 2007

Newly diagnosed

There have been a lot of posts lately on CWD forums from parents with newly diagnosed children. Every time I hear from these parents I am completely heart broken. The pain, fear, frustration, confusion and guilt is heard in each and every parents post. I usually end up counting my blessings that Maddison was diagnosed at 6 and not 2 as it seems so many kids are. I just could not imagine. I feel so bad for the parents that have toddlers with Diabetes. I was trying to find the right words for how bad I feel, but there just aren't any that could explain. You parents out there are amazing!

For the first 4 months after Maddison was diagnosed, I was a serious mess. I nearly lost my job, I would cry all the way to work, and all the way home. Heck, I just cried all day every day for months. I was so overwhelmed with the possibilities of lows at night, lows at school, or just lows period. I was overwhelmed that I had to poke my daughter 10 times a day and draw blood to keep her alive. I hated giving 4 injections a day. I hated counting carbs and sometimes (too many times) getting it wrong. Talk about guilt. I hated people asking me if we had her "stabilized" yet. I hated them telling me it would be okay. I just could not see the light at the end of the tunnel. Month 5 was getting better, then we started the pump and all the emotions and concerns started all over again. What a lot of work the pump transition is! It took at LEAST 3 months to be happy with the pump, to feel like it was paying off and we were doing better, being more "stabilized" and more in control.

Fast forward to one year 12-4-2007. This is just life as we know it. It is just what we do. I wish all the new parents to Diabetes could know in their hearts that it will be okay. I never believed that the sadness goes away. I never believed that this life could be so routine. I never believed that we could be happy again. But we are. We are back on track despite the constant changes, highs, lows and stress of the disease itself. The problem with Diabetes though, is that you just learn to accept the fact that you will have highs. Sometimes a lot of them. Sometimes there isn't an explanation. A lot of times there isn't. You still hate it, you still battle in your mind everyday. But, you deal with it and move on. (most days) There really is no use in wallowing in the why's and being pissed off at your meter. (took me a long time to learn that!) It isn't anything you did wrong. This is just Diabetes. Now it is easier to make adjustments, you feel more confident and less guilty in your decision making. You still cry, you still get angry....but somewhere your outlook changes along the way. Somewhere, you learn to live again. It was scary in the beginning, and we still have scary days. But, you know that for all the scary times, life is continuing and we are amazing for what we do every day to stay alive......alive and healthy!

So for the newly diagnosed, I never thought that I would say it, I never thought I would get here, but it really will be okay again. You will end up a more caring, appreciative person in the end. Stronger emotionally, spiritually, with more diligence and determination. It's hard to believe that something good actually comes from day soon you will see.

Wednesday, December 26, 2007

Christmas and New Year

Well, Christmas came and went. We had an awesome relaxing holiday. I got the perfect digital picture frame from my husband, I love it......I could watch the pictures like a movie all day. Blood sugar has been really good for us both. That is a Christmas gift in itself. I have Maddison's night basal adjusted and doing great. She does drop a bit more than the suggested 40 points SOME nights, but it is better than correcting 300's all night. With the kids on Vacation, I am supposed to work and have no babysitter the next 2 days......not sure what to do about that! I am happily anticipating the New Year, I have a ton of plans and goals set already.

If anyone knows Maddison, they know her love of animals, especially birds and Quail. She got the Squackers Fur Real McCaw from "Santa" She got a very thoughtful gift from my sister.....a pair of binoculars that take pictures for bird watching, along with some bird and horse books. Perfect! I was so happy for her.....

Then there is my spoiled Hannah who officially has everything by age 11. I broke down and gave her the spare cell phone. I really think for her age it is totally unnecessary. I really wanted to wait until she is 13 or so, and more responsible. I guess I fell victim to the pressure's of every other kid that has one. Hannah is literally the last of all her friends to get her own cell phone. Thank goodness we have unlimited text messaging! Hannah also got a digital camera from my mom and dad, and her own DVD player. She got a projector that turns any room into a home entertainment theatre! As usual, my kids got way too much.

Well, I am off to organize closets and fit all the new belongings in somewhere. I need to come up with a child care plan for work this week. It is hard to leave a child with Diabetes with just anyone. If it wasn't for the "D" I could just leave the kids here tomorrow, Hannah is pretty good at watching Maddison. Josh will be here sleeping anyway. I really hate his new night shift for that reason. We will have child care issues for every day off school, Spring break and Summer vacations. I don't know what Josh was thinking taking this new shift.

Better days ahead for 2008!!Blood sugars are being conquered with alot of determination these days and less questions. Maddison will be starting dance class and a bird watching class. Hannah will continue Volleyball, and I hope she goes back to softball. That girl is so athletic. We just need to keep her away from the I am ready for you 2008!

Friday, December 21, 2007

One thing I hate about the pump

Bad site change. Tonight was our 3rd in 6 months. Not bad I guess considering we only use upper bottom sites. We use the quicksets and love them. No pain at all, unless of course you hit a muscle in skinny Maddison. Only had that twice though, and it of course was the other bad sites. We have tried the Sure T's for skinny tummy sites, but I hate that Sure T as much as Maddison does. It is a bit sore the whole three days, and on your stomach you feel so vulnerable. Like it is just asking to be ripped out.

So Hannah and Maddison had a day shopping with Aunt Christina. I had to go into work for the big Christmas party, so she took the day off to spend with them and babysit. I decided (today anyway) that I love my job too for the people. Dr Finberg is great, and I feel even more obligated to stick around at the j-o-b that I hate because the people are all so wonderful. No drama, we all get along, all very caring people. -Sigh- I am lucky to have this office. I guess I will try and like it and stop with my boredom whining, LOL

So Maddison is sitting on the computer playing a Christmas activity CD printing out pictures to her little hearts content. She is 449 with this bad site which gives her a 1.4 correction. We will have to see what the next hour brings. This will be a long night I guess. I hate the fact that she was 449 and doesn't know what high feels like. I hate the 449 and seeing visions of kidneys and eye problem flashing in my mind. Why can't the damn pump have an alarm when the cannula bends? That would prevent the 449 after the site change. I hate knowing that the meter will show that 449 in history for the next month. No pretending it didn't happen I guess. We have our 1yr appointment January 17 and I am embarrassed to have our Doctor see it! Why do these numbers make us feel so horribly guilty? So bad sites are ONE down fall for the pump, but I still wouldn't go back to shots for anything.

Wednesday, December 19, 2007

The guessing game

Maddison has recovered from her bout with a yucky cold. Her numbers have recovered too and are more predictable from noon until 6pm but screwy in the morning and at night when sleeping! One morning she was low (64) at her morning check after recess. The next two days she was too high (220's) with the same damn breakfast. So, I am left to ask Maddison what she did for recess that day. "Did you run and chase boys all recess?" "Did you just sit and play in the sand?" Hmmm. Colder weather? So now I might be needing to change something in the mornings too. I am still trying to get nighttime right!

After illness, Maddison's numbers are harder to control, and I adjust her pump settings accordingly, but they never go back to what they were before. So, I am STILL working on the 3am lows too! This morning Maddison was 76 at 4am. Not that low, but too low for sleeping with Diabetes. I slept past the alarm blaring since 3am to check her. I have been guessing on changes to make, because nothing I tried for weeks helped. I hate this guessing game. It is the worst part of Diabetes. Trying and trying for weeks to get something right. One basal adjustment (we are pumping) screws up another time of day. Then you have to switch it back, try something else. A week goes by. Then something else needs to be adjusted. And guess what? Tomorrow is the last day of school for 2 1/2 weeks. That means nothing will make sense for Christmas vacation. Nothing will be predictable with sleeping in, staying up late, excitement, different meal times, different foods, playing outside all day, running around the house instead of sitting at a desk all day........ Oh geez! I was so determined to get these whacky numbers stabilized. HA! In the next two weeks after getting vacation numbers good, it will be back to school and time to change again!

You know, I just want to say to you Diabetes, that I DO NOT think this guessing game is much fun. I am one that likes to be in control. To me, there is a reason for everything, and now I see with you, sometimes there just isn't a reason and certainly not a clear answer. I am tired of my Maddison being the center of the game, the Guinea pig. I am tired of you making me feel incapable of figuring this out. But guess what? Being a Pancreas for a 7yr old growing, playing, energetic girl is impossible some days to get right. But I am still working on better numbers! I know you are in cahoots with a thing called metabolism. I know you are out of control with the growth hormones at night and that you like to crash in the early morning hours when you think I won't catch you. But I am here, fighting you every day. I may be tired, and you might have me confused for these past few weeks. But in the next few posts you will be defeated. I will figure you out, even if it is only for Christmas vacation. How's that for my own pep talk? LOL

Sunday, December 16, 2007

The backseat

This weekend Diabetes took the back seat. It wasn't an issue or a concern amidst a weekend of busy fun. That is the way it should always be. Not that numbers were great. Maddison is still running a bit high from her cold. Then she had lows all night Saturday night thanks to a not so good choice in basal adjustment on my part. But, for the first time in a long time I chose not to stress about it. It was what it was, we corrected and I continued without the guilty feelings I usually have. I guess the busier we are, the more the numbers fall into the background. The more occupied my time the less I worry.

We had Friday night birthday/early Christmas celebration at Grandma's. Saturday was the JDRF ceramics painting even to create artwork for the Promise Ball in January. Then we headed to my sister's house in Gilbert for another early Christmas. My new nephew is 4weeks old, and I didn't want to put him down. I was sad that my kids have grown so independent. I was proud of the girls they have become. But I miss the days of sitting on the couch with a nursing baby. If I didn't have Diabetes, I think I would almost consider having another baby. I had my kids at age 19 and 23....I think a mom at 30 would be alot different. I would probably be alot more tired, and a little less fun. But I think it would be alot different than kids in my early 20's. I sure can say I would do ALOT different. You learn the hard way I guess. Today we had our local support group Christmas party at the park. It was so nice to see everyone again. There is alot to be said about knowing others deal with this Diabetes game every day. It makes you feel less alone, and helps reassure that yes, we are doing the best we can and we all go through the same craziness.

So hooray for me! I have let Diabetes take the back seat this weekend even with not so good numbers. That itself is a step ahead for me. We had great fun without my constant worry for a change. It is just like I was told in the beginning, it doesn't get just learn to deal with it and move on. Isn't that the truth?

Friday, December 14, 2007

Low Low Low and Type 2 Rant

Since starting some new medications I have been low low low. I'm sure it is the medications, but the Pharmacist disagrees. I had a 44 yesterday, a 56 and mostly 70's. I have been eating alot of uncovered food. Reduced my basals by half, and I still have lows. I canceled a dual wave bolus with 1.2 remaining for a low after dinner. I went to bed at 103 and was 108 when I woke up. Glad I cancelled that remaining 1.2 before bed. I haven't been waking up to my lows either, which is scary. I would hate to have a problem at night and have one of my kids find me having a seizure! I have been finding my lows by checking myself at midnight and 3am when I check Maddison. So of course now I am not feeling low until the 40's since I have been low low low for a week now. Ick!

I am at work today and it seems every patient I am working on has Type 2. With complications of course. Then someone came in and says, "We brought in Chips and Salsa, but I am sure you can't eat it." I wanted to shout "You are RIGHT! I can't! I drink water and eat Sugar Free Jello all day!" I usually say "I eat anything, but I just have to take insulin for it" But not today. I just smiled, and cussed them out under my breathe. I wish the world knew about Diabetes. I wish people would shut their mouth and stop thinking they know. I would never comment on someones heart disease, cancer, or lupus, so why do people feel the need to comment about Diabetes? You know why?

Media. The media has sent the wrong message about Diabetes. I was in the grocery store the other day and the overhead recording came on talking about "Diabetes" It didn't specify Type 2. But yet, it went on to say that "Nearly 2 million Americans have Diabetes and don't even know it" !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!Ugh. I hate that the most. Like us Type 1's could just continue life without insulin. Type 2 specifics please!Sheesh! So, here people are hearing these things advertised and thinking that Diabetes is something so simple. Advertisements or news reports always include the diet/exercise scheme making it sound like that cure's the Diabetes. I could run 50 miles a day, eat nothing and still DIE without my insulin people! Insulin is not just for food. Insulin is for life. For your metabolism, for every bit of energy. For your brain, for your every body function!!! Geez. I wish we could just change the name Diabetes all together. I am all for Pancreas failure. Pancreas disease. Dead Pancreas, I don't know. Something. Not that ANYONE deserves to be judged by Type 2 diabetes, but certainly not our children. If I told you how many times people have asked me how much weight I have lost you would think I was joking. I just say "You are thinking of Type 2 Diabetes" when I hear that anymore. That is my rant today for this stupid disease.

Wednesday, December 12, 2007

Sick kids

Maddison stayed home yesterday from school with a nasty cough and cold. Of course she felt great after 9am and ran around the house all day being silly. Some weird high numbers and small ketones that were easily flushed with water. Hannah came home today early after the nurse said her throat looks like strep. So, we took them both in, Hannah positive for strep and Maddison negative. Maddison has been high (200-340's) the last few days with good drops to the 100's then right back up. Gotta hate Diabetes and illness. They really make blood sugar wild. Tomorrow is early release so I guess I will have two sick kids home with me all day. So much for Christmas shopping on my day off. Now Maddison's cold is causing highs at night, right after I adjusted the basal for lows! ERRRRR. Never a relaxing moment in blood sugar land.

I had a lunch meeting today at work and decided I love my employer. They really think the world of me, too bad my job is so damn boring and I dread sitting there all day. But what am I supposed to do? They let me choose my hours, choose my days and change them at a moments notice. I give them my schedule. Not many people can say they have that benefit. I am very fortunate to have them. As long as I get my 24 hours in they never complain. In fact, I have only been working about 16 hours a week for the last few months thanks to Josh's changing new schedule. I have called in sick due to myself or Maddison every two weeks the past 3 months. I have had to miss work for early release days because we have had no babysitter. I have attended field trips, Thanksgiving lunches and many activities at the school so Maddison wouldn't have to miss out. Yes, technically her 504 plan states she is to always be accommodated in these situations so she doesn't miss out, but that would mean the entire school is without a nurse. So I attend these things to keep the peace for the other kids that need a nurse too. I should have been fired for attendance last year when Maddison was diagnosed. I missed two weeks, and then cut back my hours in June at a days notice for the pump start. I change my schedule every summer so one of us is home for the kids. The year before that it was my diagnosis that had me missing tons of time. And they still always tell me that I am a great employee regardless. I guess that is why I stay. I need the flexibility. There is always something that causes me to miss work or adjust my schedule. So I am trying to be happy staying at a job that bores me to death. LOL It doesn't make much sense really, but I guess money talks, I am trapped, so I will have to get over it.

Back to the Diabetes thing as usual....I downloaded my numbers to my Copilot program again tonight as I do every week or so. My numbers are pretty awesome,I average 117 over 30 days. I am happy with that. I should be continuing my morning workouts, but I am too tired in the morning. It is too cold to get out of bed, blah blah blah. But, my numbers are still really good with only the occasional lows from bad carb counting. Thank you pump. I never could have done it without you. My problem though is numbers are predictable, easy to control, no highs over 200 and no lows below 60 for the most part. Except the 2 in the 40's the last 2 weeks! I guess carb counts most days and I am always fine. MADDISON however, is ALL OVER THE PLACE. Yes, I know she is 7. Yes, I know kids are hard to manage with growing and all the variables. But it still makes me feel horrible for her sake.

We have the Minilink CGMS approval so in January our DME will renew for the year. Insurance will pay 80%. So, I will be happily wearing the Minilink to learn the ins and outs before hooking Maddison up. I HATE HATE HATE to make her wear another site. I keep telling myself that it is for her health, but my heart doesn't listen at this point. My heart still breaks for her with every site change. I can't imagine having another device attached to her tiny body. I can't imagine the information it will give me. Some of it will probably make me cry. The spikes, the drops, the wild swings in blood sugar. I am scared to even see it. But we have to do something. We are checking her 12-15 times a day a getting nowhere. I hate poking her little finger so often. Maybe our Honeymoon is ending. I dont know. But I do know that she has a little demon inside that has been winning most days and I am eager to defeat it.

Monday, December 10, 2007


Tonight after girl scouts Maddison was 324. Yes, this was just one hour after the girl scout treat, 2 "Sugar Free" (YUCK! how nice of them)chocolate chip cookies, and a graham cracker square. So it makes me wonder why she spikes so darn high? She did start out on the high side (224) for dinner anyway and girl scouts was right after. No notice to let me pre-bolus, so that didn't help either.I am always a pre-bolus mom. I have to. She spikes to crazy numbers, then drops in range by 3 hours. It amazes me that people can bolus after they eat. I understand that some have to with young children. I never, ever see a 200 of my own, certainly not a 300, even after birthday cake, Thanksgiving, cheesecake, huge carb binges..... Never. My insulin goes in and works alot faster than for Maddison it seems. I just don't understand it.

Those numbers after eating haunt me in my sleep. Sometimes I check an hour post prandial just to see what is happening in that little body. That is how I learned to pre-bolus, even starting to eat at a "good" number. If she doesn't finish what she is carbed out for, she gets a snack in an hour or so, or juice. She doesn't eat fruit, so juice is a good choice. It usually works well. The funny thing is she seems fine, she doesn't usually feel her highs. I guess most kids don't. I know when I was diagnosed with an A1c of 13% I thought I was dying. I sure felt it. I guess it is staying at that number that catches up with you. I always think of the damage being done with a 200 or 300.

Sometimes I even have nightmares. They usually involve the Dialysis Clinic. My Dad is currently on home dialysis, but when he had to visit the clinic 3 times a week for Hemo-dialysis my sisters and I each took him a day of the week. Talk about torture. What a horrible, miserable place. My dad had recurrent infections at home with the peritoneal dialysis. The only option was the clinic. So, I would sit there with him as he the machine took over his body. Crazy how something that was keeping him alive was such a nightmare to see. He suffered severe cramping, fainting episodes, emergent drops in blood pressure, blood sugar. Severe headaches. He would turn pale white, stop in mid sentence and stare. Every minute that I sat there I was as stiff as a board. I was so tense I would come home afterwards and suffer the worst migraines, and nightmares. That is nothing in comparison to what he went through, Mondays, Wednesdays and Fridays of every week for 6 months. Finally I couldn't handle it anymore. I couldn't listen to any more patient stories of their lifetime of battling Diabetes. I was new in my own diagnosis and depressed anyway. I was scared for him before he had to go to the dialysis clinic. Now it was me, and I was only 28 with 2 kids to raise. My day to take him was eating me alive. Making me completely hopeless. So, looking like a coward I started to just wait in the lobby, no more sitting in the back holding Dads hand, keeping him company and his mind off of the torture. I feel guilty for that. I know he understood, but I still feel horrible about it.

So, when Maddison has these numbers that is what haunts me in my mind. They say that complications set in after about 20 years. Well, my dad was 32 when diagnosed. He was about 50 when he had to quit work due to retinopathy. Kidney failure at age 55. Maddison was diagnosed at age 6. You do the math. And people wonder why Diabetes rules the lives of parents that have children with this disease. We are desperate to keep our child's health.

On Saturday we visited my Dad and Mom, and my Dad had the usual comments to Maddison about taking care of herself. And me too of course. So then it came time for him to go do his "exchange" (he does Peritoneal dialysis 5 times a day now at home)He goes into his room and lies down for about an hour process. He usually falls asleep. So, it was late and we needed to get the kids in bed. We went in to kiss him goodnight and goodbye. I felt sick seeing him laying there with his IV pole and tubing coming out everywhere. I felt sick because of everything he has gone through, and continues to go through because of this stupid disease. I felt sick because Maddison sees him like that. I wonder what she thinks about Grandpa and his Diabetes. I wonder if she is scared sometimes. I do my best to make sure she knows that won't be us. To tell her that Grandpa didn't have a pump like us. To make sure she knows Grandpa never learned the right way to take care of himself. To make sure she knows that we have better treatment options everyday. I always tell her how lucky we are to have Diabetes in 2000 and not 30 years ago. But it doesn't make me feel any better.

Anyway, enough of that. I was going to post today about our weekend, and somehow Maddison's 324 tonight chased away all my good weekend thoughts. We had a great weekend. Lots of birthday fun, enjoyed some cold weather. Lots of family and a chance to sleep in! What else could you ask for?

Friday, December 7, 2007

Crazy day

I am very foggy headed today, I don't know if it is adjusting and checking basals all night the last week, or if it is the new Anxiety/Depression medication I started on Tuesday. I feel like an idiot! My head is floating in the clouds. And it is not without error....

I primed a line of bubbles out of Maddison's pump before school, and left it in PRIME MODE! (to push insulin through the tubing) I realized about an hour after I sent her to school, so I rushed off in a panic to fix the situation since we have no school nurse today. Not that the nurse would know how to fix the pump anyway if she was there. The Fire Department was there, and even though I knew Maddison would be fine, I thought OMG! I just killed my daughter with one careless mistake! Well, they weren't there for Maddison. A boy had fallen in the rain and bumped his head. Of course the fill in "nurse" was all stressed, (as I would be too) this kind of thing always happens to her when the nurse is out. So I called Maddison in and sure enough! The numbers on the pump were flashing to continue priming. Pretty scary when you think how one hit of a button could have given her the ENTIRE RESEVOUIR OF INSULIN. Fixed that problem and then I created more!

Today was "Speghetti day" in the classroom, and I was planning to come in and dose Maddison for lunch anyway to save the fill in "nurse" the issues of counting carbs in pasta and dosing for it. (Pasta sends Maddison lower, then higher)So, I stayed and helped the teacher a bit. Time for lunch, Maddison is 140. I dose her for 20c of Speghetti and help the teacher dish it out and serve the kids. Hello! Mom! Do you have a brain today??!! Maddison will not eat speghetti with sauce!! This speghetti is all mixed up and everything! She tries it (maybe 5 noodles) and makes a gagging motion. (roll your eyes here) So I realize SHIT! About 20 min ago she had her insulin, I have to get her home to eat something! (she wont eat cafeteria food either) Rush off home, feed her lunch with some juice first, (KICKING MYSELF AGAIN) Then back to school where all hell breaks loose. The fill in "nurse" goes running off down the hall for another emergency on the playground. Poor lady. She has no medical training and even stresses when she sees Maddison coming in to check for lows.

So cupcakes were coming later, I figure I better stay and eyeball a carb count on them to spare the "nurse" that stress of the day. The last time she dosed Maddison for a cupcake she counted 45c and gave at 1pm. By 3pm when I picked up Maddison from school she was 42, 30 carbs it took to get to 48, then the rebound hit....387. THAT was a long night. You never know what to dose for unless it has a carb count. All the carb books need pictures to compare I guess. She felt so horrible when I told her not to use 45c again for a similar cupcake this year. Anyway, I dosed Maddison for the cupcake and all is good. I planned Christmas shopping for the day, I think I better stick close to home just in case.

It is a perfect rainy day today, we were given tickets from our local JDRF for a hockey game tonight in the Wayne Gretzky Suite. Hannah is so excited. Maddison could take it or leave it. We have 2 birthday parties (YIKES!) this weekend, and Christmas pictures Sunday. Next weekend gets even crazier. Gotta love the Holidays. Then the New Year which I have alot of resolutions to plan! So much I want to work on. We are getting there. One crazy day at a time.

Wednesday, December 5, 2007


Today I got to stay home from work (yeah!) to attend Maddison's field trip. It was a ballet theater performance of The Snow Queen. It was a very nice performance though if anyone knows me, you know I was bored to death just having to sit still for an hour. I am usually done with anything after 5 minutes if it involves sitting for a long period of time. So, I sat there and wondered about how I should handle school situations and Diabetes.

I wasn't uncomfortable last year. So what is different this year? Well, I don't want Maddison to feel different of course! Last year when diagnosed we were very open about it. Maddison was diagnosed 3 months into the school year after all the kids in her class already loved who she was. Then came the Diabetes, and they were all so caring and cautious, protective of her. But this year is different for some reason. Maddison started this year repeating 1st grade and new to all the kids. Not only was she new, but she has a new pump that all the kids questioned. This year she felt "different" per say.

So today I tried to encourage Maddison to sit with the other kids on the bus, instead of with me. I guess I want her to feel like I am not even there, because now I always have to be. Her dad and I sometimes attended field trips even before "D" so I am sure she knows that we want to be there, not that we are there because we HAVE to be. I just don't want her feeling like she "needs" us for everything, even though this age with "D" she does need someone at all times for these things. -SIGH-

Anyway, lunchtime came, and all the kids gathered at the picnic tables. I had our lunch in my own backpack I brought, you know, the supply bag. Maddison said "Mom let me carry my lunch, I want to be just like everyone else" so that comment made me scared to make her feel "different" today. I didn't want to poke her finger with all those kids around. For a minute I didn't know what to do. What?! I don't know, it was a weird moment for me. I guess I just knew the questions would start after that, and I didn't want them to for Maddison's sake. But you know after 3,000 finger pokes in the last year I was able to pull it off without even one child noticing. One little girl noticed me using the pump though, and asked if I was able to "use that thing" She said she thought only the nurse knew how to use it. But that was it. A perfect field trip, and no being overwhelmed with questions. Thank goodness.

I hope Maddison didn't feel "different" today being the only one poked at lunch. Even though it is so routine for us, sometimes we don't like the whole world to know our business. Sometimes I wish I could hide the finger pokes, the pump, the carb book from others in public. Sometimes it doesn't bother me at all. Maybe after many years of all this I won't even know the difference.

Tuesday, December 4, 2007

One year ago today

One year ago today our lives changed forever. At this time last year Josh and I sat in the emergency room holding Maddison down as she pleaded with us to not let the nurses put her IV in. As tears come to my eyes, I realize now that at that moment I had no idea how hard Diabetes for a child would really be. Like I have said in my other posts.....its the emotions of the disease that is the hardest part. I think it is a million times harder for me in this way than it is for Maddison. (at this age anyway) She is so darn happy all the time. She never complains. She is an amazing, brave, and resilient girl! Even Hannah knew today was "D" day, and that makes me sad.

Amazingly, I have been in high spirits all day. I thought I would hide out in my room and cry all day like so many parents have told me they do on the 1st anniversary. But, today I am more feeling relief, that we have made it through the first year, and I have learned so much. We have battled the "common" kid illnesses this past year without it landing us in the hospital as it does for so many children with Diabetes. For that I am thankful. I am grateful that one year ago today we had a diabetes diagnosis and not Leukemia or a potentially terminal illness. Some mothers face a one year diagnosis date without their child. Wait! I am getting all emotional......I have to stop and get back on track!

I talked with Maddison today after school about my feelings and how "lucky" we are. I can honestly say, she understands. She may not understand when she becomes a defiant, burnt out teenager that has to actually manage the disease herself....but for today, she knows to think about last year and remember what she has overcome. The fear in the beginning is not with her anymore, I harbor that for her. That's what all the Diabetes moms do.

Now we are off to the park, Maddison's choice to "celebrate" her one year of defeating Diabetes. I am sure she will ask for some ice cream to go with it. Good thing we know today what we didn't know last year about that sneaky ice cream! One year defeated, and many more successes to come.

Monday, December 3, 2007


I think one of the hardest things of managing "D" is that you end up with self doubt so often. There are so many variables to consider when adjusting doses. Change basals? Change a ratio for a time of the day? Change sensitivity? Change the last snack time before bed? Add or reduce carbs for the bedtime low? Reduce basal for a high activity that day? You know what I mean, all the things we have to consider BEFORE making a change. Sheesh!

Maddison has had some weird lows here and there at 3-6am. Of course, it was days, even weeks apart. If I had seen a pattern a few days in a row I would know just what to adjust and when, how much and for what time frame. But no, Diabetes is not that easy sometimes, most of the time really. So, I end up doubting myself. I end up thinking that maybe I am clueless, even though I know I am not. I have made amazing progress with adjustments in the past, nearly perfecting basals for a month once! A whole month! One whole month Maddison was completely stable at night. I was foolish to think it would stay that way.

After checking Maddison in at 72 for her 3am check last night, I lay there until 5am trying to make sense of it all. I couldn't get back to sleep. Now I am struggling with not only exhaustion, but insomnia. I can't sleep after seeing shitty numbers all night because I think about them too much. I am a person that has to always have a reason. Sometimes with Diabetes there just isn't a reason.

I have a log, I mean, I detail everything. I log every number, every activity, mood, sniffle, the days she rode the bus to school, (more recess in the morning) the days she just sat around after school, the days she runs laps around the neighborhood, everything. And I see nothing. So, most nights I am up......Chasing numbers lately, because nothing I have adjusted has made a difference. Corrections at night used to work out just fine. Sometimes perfect. Now I correct, correct, correct and they don't budge. You would think I could change night time sensitivity, but nope! Causes lows. Change the basal even for a half hour? Nope! Causes lows. I have been around and around reasoning why we are fighting this right now. Sometimes there just isn't an answer.

Saturday, December 1, 2007

Not so bad

Hannah is having her much anticipated birthday sleepover tonight! We have 7 giggiling, wild and crazy 11 and 12 yr old girls sleeping over!! I must say, they are a funny bunch of girls. They chased away my grumpies from the minute they came home from school. I have been fighting a sore throat and headache for days now, besides the PMS that has the whole house hiding from me. This sleepover is just what a grumpy mom needed to come out from hiding. So, we all had pizza before I had to take Maddison to the dreaded birthday party.....

I know, great combination. Pizza 1st, then 2 hours of jumping and excitement followed by cake and ice cream. Is there any parent that always doses pizza right? Ah yes. The party tonight. Every weekend has a birthday party it seems. You would think that after a year of dealing with them that they wouldn't stress me out. Part of my master plan was to turn Maddison's basal down to 80% for 3 hours before the party. Gotta love that benefit of the pump. I gave her half the insulin she should have required for the pizza at dinner. When we got to "Pump it Up" her blood sugar was 297! I was surprised and pissed to see it so high, but at least I felt she was safe at that number to be jumping for 2 hours non stop. I had back up gatorade, juice and all the good stuff. I really didn't think I would be needing it..... so, just AN HOUR after jumping at the party she felt low! 54!!! Geez, you have got to be kidding me! Imagine what that number could have been had I not taken the precautions I already took! Two glucose tablets, 13c juice. Recheck 82.....2 more glucose tablets as she begged me to just let her go play. Another half hour or so left before cake. That last 2 glucose tablets should do her......a nice 113 afterwards, so bring on the cake. Not so bad until we got home and Maddison was 308. I took it easy on the cake dose, fearing another low in the hours to come after all that exercise. Guess not. Knowing that she went from 297 to 54 then back to 308 just makes my stomach turn. I feel so bad for her. I'm tired of inflicting these roller coaster rides on her just to keep her safe from lows. I'm feeling very envious of anyone with a working pancreas right now.

It amazes me that parents (we used to as well) have these birthday parties and invite 30 kids. It is ridiculous to see a kid go home from a birthday party with 30 gifts. I mean, really. 4 baby dolls, 7 Barbies, 3 Bratz, games, gift cards, stuff stuff and more stiff. Do our kids really mean "thank you" after each 30 gifts? I think it is great that our kids are encouraged to be friends and include the entire 1st grade. I think these parties are great for that reason, but to me the amount of presents is just overwhelming. Our kids don't need all these gifts. If we could just leave the gifts out and enjoy each others company I would feel better about the whole thing. I guess I am just weird that way.

Another example of gift overload, we are supposed to have a support group Xmas party. They want to do a gift exchange, and I was the first to vote a big FAT NO. My idea was to encourage a craft and perhaps make cards for the kids that will spend Christmas in the hospital. Of course, everyone thinks I am a Bah-Humbug, and I guess in a way I am. They must think I am just too uptight about the whole thing. Now, this idea to me is something meaningful. I don't know where I became so Anti-gift. I guess this is a part of how I am seeing life after diagnosis so differently. Our family has so much, and I am always so grateful for that. I seem to always be thinking of everyone else at Christmas time that aren't as fortunate as we are. My kids don't need another toy that will be tossed in the closet. If you want to give my child a gift for their birthday, take them on a date. Spend some time with them, become someone they can talk to, and learn about the person they are. Go to a movie, have lunch, or better yet....just come over for a game night. I don't want another meaningless gift. I don't want anymore gifts just because they are "expected" for Xmas and birthdays. I really, truly don't. Sometimes that is just how I feel. Especially today because I am grumpy, fighting a cold and have been thinking so much about this birthday party today. I mean geez. 30 kids at a birthday party? It seems more chaotic than enjoyable. On Sunday our family will be here to celebrate Hannah's birthday. A bunch of gifts all meant to be thoughtful, but somehow so meaningless.

As I re-read what I just wrote, I realize that I am nothing but a grumpy bitch lately. ICK! I really need to get back to my workout routine and get over this negative attitude. It is the only hope to kick this second personality of mine LOL. It wouldn't be so damn hard to do that if I wasn't up every 2-3 hours chasing numbers. If I wasn't so sleep deprived and totally unmotivated. I have obviously been missing my daily dose of feel good endorphins. That is where I promise to start tomorrow. Something for ME. Now, lets just hope these wild crazy girls all get to bed!

Thursday, November 29, 2007

The birthday invitation

Am I the only mom with a young "D" child that cringes at the sight of a birthday invitation? Don't get me wrong. I love the fact that Maddison is invited, and to see the sparkle in her eye knowing that she gets to go to a party is priceless. Of course this is a party at Pump it Up, an indoor jumpy Disneyland for kids, even adults. For two and a half hours Maddison will be jumping non-stop, enjoying pizza and cake in between. I love that she is healthy enough to do these things, but birthday parties and Diabetes SUCK! I have been master planning how I will dose for the cake vs the hours of activity that will show its ugly head later (and sooner) in the night. I feel guilty for dreading birthday parties, but you just never know what it will bring.

There was the magic party that included so much excitement we chased lows the entire time. We sat drinking soda and eating the cotton candy while other parents looked horrified as they watched me frantically feed all this sugar to my "D" child. She stood in front of them pale as could be, giggling, seemingly fine. I really thought I planned well for that party too, but Diabetes won that day.

There were the swim parties that she ran high the whole time and was too exhausted to even enjoy herself. How could that happen? Sometimes the burst of adrenaline in swimming makes her go higher first, but for hours she stayed high. Was I supposed to deny her any food? Deny her the cake and ice cream because she was high to begin with? Of course not. But you feel guilty either way you choose.

There is the tea parties that I assume will cause highs from tea cakes, cupcakes and cookies, only to leave me dazed and confused all over again wondering what the hell I did wrong. Chasing lows with all that sugar? Is it the excitement that burns up the sugar making you think for just a day you were without Diabetes?

I wish I could just drop Maddison off like all the other kids, and not worry about every single bite of cake. Not worry about that stupid jumpy house. Not worry that she feels "different" having her finger poked a million times in 2 hours because she is low, low, low. One party she asked me to check her sugar in the bathroom because she didn't want all the kids to stare......she was never embarrassed before. My eyes were full of tears as I told her it was okay, to never hide in a filthy bathroom to check your blood sugar. You should never be ashamed of Diabetes. But, even I myself "hide" it sometimes, how could I expect her to always be so confident and secure with herself? We made it as private as we could that day, but my heart broke into a million pieces for her. I cried for hours that night.

So, tomorrow I will be full of anxiety in anticipation of what the party will bring. I pray that she won't go low and have to sit out waiting to resume her play. I pray that she won't be sky high in the end either. It is just one day, and for one day I just want her to do all the normal kid things again without worry. (moms worry that is) Diabetes is harder on the parents on party days. She won't even notice Diabetes is there. But mom always does. Every single minute, until you see her smiling face, and hear those words....."that was the best party ever"will mom know Diabetes is there, and I will still always have a master plan. I plan on this party to be picture perfect, no scary highs, no scary lows! I have learned from my mistakes, and learned that sometimes my best is all I can do...... As long as she has fun and runs, jumps and plays to her heart content, I will be a happy mom. And then in the end I will need a nice bottle of wine :)

Wednesday, November 28, 2007

Starting over

My intentions of starting this blog back in June were in the right place. However, energy...... or having any energy to blog was not with me. The last year has been exhausting. Before collapsing in bed each night the last thing I wanted was to bring up all the emotions of my day. Therefore, today 11-28-2007 I am starting over. I even deleted my initial blog post to start clean. I am up half the night anyway, so this is a promise I can make. I am settling in to the new "normal" sleep deprived life of a mother that has a child with Diabetes.

This blog is for my sanity. My own place to release my whirlwinds of emotions without the guilt of inflicting it upon others, unless of course, you are here with me and find peace at knowing you are not alone. My goal is to help other parents through the emotional turmoils we face every day managing a child with Juvenile Diabetes. You will have to forgive me in my sometimes random paragraphs that jump from one topic to another. Remember, I am sleep deprived and not a claimed English major :) This 1st blog gets a little long.....

On December 4th, 2006 my 6yr old daughter was diagnosed with Juvenile or Type 1 Diabetes. Click here to learn more about Juvenile Diabetes. I don't feel the need to add any other education on the topic. If you are here, you or someone you love must be suffering from this horrid disease. I was myself diagnosed with Type 1 just 9 months before my daughter. Weird? I agree. Overwhelming, at least.

Our story:

My own diagnosis was nothing close to what I felt when it happened to Maddison at such a young age. Maddison had always been very emotional, since about age 3. I always questioned her meltdowns, and swings in mood. Steadily after the age of 4 these swings got worse. She never slept well. She preferred milk to food. I never realized it was thirst that caused her to crave milk, or that she was an emotional mess after eating sugar. Now, most Physicians will tell you that most kids have a sudden onset of Diabetes. For Maddison, it was a very slow onset, much like my own that I saw coming for years. By age 5 in Kindergarten she would have meltdowns every day after school to the point that I thought she could have Autism, or some mental issues. I assumed she wasn't ready for Kindergarten. I thought she was tired, because she didn't sleep well. I thought she felt yucky because her poor diet, she hardly ate since the age of 4. I questioned my parenting and figured she was just a difficult 5 year old. Then the bed wetting set in. Once here. Once there. She wet the bed because it was 120 degrees in phoenix, which made her drink more water. More water = bed wetting at night. Then I was diagnosed with Diabetes, and I realized that Maddison was alot like me after eating. She could just fall asleep. Her moods were wild like my moods were wild. Ah ha! The light bulb clicked. The more I educated myself when I was diagnosed, the more scared for her I became. But denial is something very real. I never understood how a person could be in denial. Now I know denial is very real!

Fast forward, Maddison turned 6. Started 1st grade, but was more tired, I knew she wasn't ready for 1st grade, on so many levels besides emotional issues. Then she wet the bed nearly every day for a week. She complained that it tickled when she pee'd.....bladder infection? That was my answer. She hated waking up for school in the morning, and complained that her eyes "wouldn't open" (blurry vision) Then came the tummy aches. She doesn't eat vegetables! She must be constipated! Denial. One morning her breathe threw me off. I thought maybe she didn't brush her teeth the night before. I gathered all my thoughts and mentioned these things to my family, they of course thought I was still stuck in Diabetes craziness since my own diagnosis just months before. One night she vomited her oreo's and milk all over my bed. Weird I thought! I knew what this was!! The sugar made her sick!!But because she wasn't "sick" most of the day and seemed fine for days here and there I ignored it all! Finally she wet the bed a week straight and then twice in one night. That was it.

I had to go to work that day, I had Josh pick up Maddison from school and take her to the Pediatrician to see if she had a bladder infection. Denial! Over the phone I slipped in....oh yeah...and ask them to check her urine for sugar and ketones." When my cell phone rang at 11:00 that morning my heart stopped. Josh said to me "Kelly, you amaze me sometimes" and my tears started rolling. He was amazed that I was right, of course a mother knows! I freaked out and told my boss I had to go, Maddison's blood sugar was 497 in the office, but no ketones thank god! I was shaking so much, I was so angry at myself for ignoring this so long. What I didn't know at that time was that alot of kids are diagnosed near death. Blood sugars into the 800-1000 range. As in Air Evac, Comatose, Ketoacidosis. My child could have been near death had I ignored the signs any longer! Maddison spent 3 days in the hospital, although being my own Diabetes they wanted to just send her home by day 2. Diabetes is 1,000 times more complicated in a child, so I refused. Everyone has their own diagnosis story. Some very tragic, but we are very lucky that we caught this so soon. I thank god every day that we did.

Rewind------My father was diagnosed as well at the age of 32, so Diabetes was something I was always concerned about. I was borderline Gestational Diabetes with both pregnancies, I always knew/felt in my heart that it would catch up with me. It was still shocking when it did. It didn't hurt any less. It took me several months to come out from my darkness, I had alot of anger, and mostly fear. The range of emotions is enough to make you crazy. Somehow I managed to stick to my routine in running and workouts, the only time for me each day that I cherished. This kept my determination strong, and my focus of beating the disease itself.

I had watched Diabetes invade and destroy my dad since I was 10 years old. I still cannot bring myself to list his complications in writing. To see it in print is too permanent. Too painful. I will spare you the details. I know that education is the key. I know more today about managing this disease from my own self learning than most medical persons themselves. Sad, but that is the way it goes with a self managed disease like Diabetes.

I still wonder why my dad never felt the same sense of desperation in managing his Diabetes as I do today. I think that like so many others, he under estimated the impact that Diabetes could have on your body. Now I know the truth. It is exhausting. You feel defeated day after day. It never ends. It is a constant balance. Constant. Meaning every aspect of your day is centered around a number. You have to check your blood sugar to drive, you have to check to eat, wanna go for a walk? Gotta check that number. Grumpy? Tired? Thirsty? Just want to take a nap? You might have to eat first. Bedtime is scary. Alot of planning is involved just to go to bed at night. Can't fight those morning highs? Can't figure it out? Your well being today depends on a number. Your future depends on an A1c. No wonder my dad was such an angry man. He was exhausted, Diabetes burn out. Diabetes got the best of him. Though day after day he tried his best, it was never good enough. And then the complications set in, and he really gave up. Dad, I can honestly say I understand. I am 21 months into this and I am exhausted. You have lived with Diabetes for 33 years. I never in my life could have imagined what you were dealing with every day until it happened to me. No one can understand, unless you are here yourself. Not an Endocrinologist, not a psychologist, no one.

But this defeated, angry person won't be me. This past year since Maddison's diagnosis I have been an entirely changed person. I am not liking who I have become. Every spare minute of my day is spent looking over Maddison's numbers, and figuring out what needs to be micro managed. I spend a lot of time with support groups online, that keeps me on track emotionally. That is good. Relating with others is my sanity. I worry constantly. Will that ever change? I look like a train wreck, I cry when I see my old pictures of a happy, motivated young mom. I looked so healthy and alive. But yet today I am so torn down from fatigue and stress. I have to say, the first 6 months was the worst. Then we started an insulin pump and it started all over again. They don't tell you how a pump makes your life easier, but is so much more work in the beginning. I think about Diabetes constantly, whether in my number or Maddison's numbers.

Today at nearly a year of dealing with a child that has Diabetes, I have FINALLY come to terms with so much. I have found a new normal, a new peace in life with Diabetes. It was okay when it was just me and Diabetes, I could handle that. But with Maddison's diagnosis I have never cried so much. I have never feared something so much. I have never been so afraid of failing, because I would be failing her. Failing her life now and in the future. As the months have rolled by I have promised to stay focused. I have promised to fight this demon with all I have, no matter how tired, no matter how defeated I feel. Diabetes will never in this lifetime defeat me or my child. I am the closest thing we have to a working pancreas, and you can bet on my life that I will never let Diabetes win. I am a stronger person now. Our family is closer, more concerned and in tune with one another. I am thankful for our health, and all the little things in life are more precious.

Having a young child with Diabetes is most devastating to your emotions. Its not the 8-15 finger pokes every day. Its not the restrictions of diet. It's not the injections or pump site changes that get the best of you. Its the sense of loss. The loss of living carefree. Letting your guard down, to be slapped in the face with a serious low, or high. It's the just wanting to send your 7yr old to a birthday party without worrying about the jumpy castle and the potential lows you are faced with all night. Or the immediate low that could cause the most feared seizure in front of a bunch of strangers. Its having the only kid that has to have mom or dad stay at the party. The comments from uneducated people that think we did this to our child. We fed them too much sugar.....Did she used to be overweight? Why are you letting them have that cake? The nighttime checks. The people that think Diabetes can be "controlled" and magically thinking it takes no more effort day in and day out. The common cold that is not so common anymore. The new school year with kids that question, teachers that have to learn the seriousness the hard way, with our child being the one that pays the price. Its the little girl that can't have the sleep overs at her friends house. (someday soon I promise you that you can!) The haunting feeling you have when your child hoovers in the danger zone of highs for days. And knowing that nothing I have done to make it better can change that. The ketones that make you secretly cry in fear. The trampoline that makes me feel guilty for hating it. Summer swimming that takes planning, and a summer that is a learning experience at the mercy of our child that just wants to play, run and have fun all day. The constant adjusting. Always adjusting a dose and having to wait and watch to see the result. And praying that the adjustment is the right answer. The low that it caused. The high that it induced. Trying to take control. Day after day after day, after hour after hour. That 42 that you catch at 3am just when the last few weeks were so predictable. And knowing the possibility of what could have happened had you not checked that night. The sleep you will lose for the next few weeks as you try to forget the possibilities. A daughter that wants to have a cookie at the grocery store, and the man that feels he needs to speak his experience of Diabetes when he sees you use your insulin pump. The leg that he is missing. The words he speaks that poisons your child's mind and causes fear. The A1c that hasn't budged since your last appointment, despite your constant diligence in always managing better. Fearing that maybe your best effort isn't good enough. Maybe in the end Diabetes always has the last word. Uncertainties. Refusing food to a starving child that is 492 and just wants to eat! Wondering if she is just angry or is she high or low. Having to poke her finger to rule that out first. The siblings that live in fear and hurt too. Trying every day to be optimistic when you just don't know what the next blood sugar will bring. Seeing your child's eyes light up when they see a Diabetes commercial, because they know they are not alone. Hating your insulin pump because people stare at it. Having to stop your play and check your blood sugar. I could go on all day.......

In the end, we are doing great! Maddison is healthy, happy and thriving! She is proud of who she is, confident and eager for each new day. I guess we will be okay if we just keep our heads held high.