Sunday, May 31, 2009

Sometimes we forget/ All in a day

Sometimes we forget just how Diabetes can turn ugly in an instant. Sometimes we forget that a unusual high may not be that innocent. How do you know if a high is a random high or a site going bad? Injections give the security of knowing the insulin is for sure making its way into the body. Unfortunately with an insulin pump you have much more troubleshooting to consider. Air bubbles, malfunctions.....sites gone bad. All are sadly "common" misfortunes when using an insulin pump that can lead QUICKLY to high blood sugar. In worse case scenarios the dreaded KETONES develop.....nearing DKA.....when NO insulin is making its way into your body. Darn insulin pumps! Why isn't there a technology that can determine a site gone bad!!??

Last night I not only programmed a temp basal reduction after swimming for Maddison, but also changed many of her early morning basal dosages after she woke up at a heart stopping 52 that morning. Bad timing this morning. Lots of basal decreases for todays morning hours lead me to not recognize a bad site until it was too late and poor Maddie paid the price.

And so the story midnight last night Maddison was 82. She had already been receiving just 50% of her normal basal rate for the last two hours. 15c of juice and some PB.....30 minutes later she was 130...perfect for sleeping. An hour later she was 214. Too much juice? Basal decrease catching up? I half corrected the 214 and set the alarm for 3 hours later. 244 flashed. Maybe the PB was too much? Corrected the 244, and by now those early morning changes I programmed in the pump will start to take effect. When Maddison's meter flashed 209 at 6am I figured we would be okay. Not so. At 9am Josh woke Maddison up to take her on a fishing date. In my sleepy haze I asked him to check her BS, when he said 309 I was SURE the basal changes I made for today were wrong! Who would have known the site went bad? Well, somewhere between midnights 82 and the mornings 309 it surely did! Wouldn't you first assume the basal changes you made were wrong? It's so damn frustrating! And so we corrected the 309 as usual. Underneathe my breath I cussed at myself for causing such a high by decreasing basals TOO much. I had no idea it was anything more. Maddison and her Daddy went on their way to enjoy a day fishing.

After catching 3 fish Maddison wanted to come home. She complained of nausea and a headache. Arriving home just 2 hours after leaving for their fishing date, Maddison's blood sugar was 312. For me, it was obvious. Blood sugar hasn't moved. Nausea. Nausea is the obvious ketone give away. I immediately changed Maddison site, bolused a correction plus a tad extra. Set temp basal for an hour to 200%. I got Maddison the ice and puke bowl she requested and fumbled through a million meters to find the blood ketone meter. Ketones rang in at 2.1 (LARGE)

Sometimes we forget just all we do in a day to keep our kids healthy (alive!!) Sometimes we forget just how fast Diabetes can turn. Of course I feel guilty that I should have seen the bad site sooner.....but with just having made all those adjustments the rational side of me said it was just that. Poor Maddie was sick as can be for several hours because of a bad pump site. She was pale, lethargic and possibly nearing DKA. She felt horrible. Just that fast Diabetes turned on us. Diabetes is scary sometimes, it amazes me that people fail to recognize that insulin keeps our children (and us) ALIVE. ALIVE!!!!!! Insulin is the reason Maddison and I are alive today. A quick reality check today. Days like today I'm ever so grateful for something so "simple" as that vial tucked away in the refridgerator. Dose by dose insulin is keeping my child alive. Sometimes we forget that.

Maddison was back to skipping around the back yard and humming a little tune within two hours of that life saving site change. TWO HOURS. Kids amaze me how they bounce back so quickly. Although I'm still kicking myself for not changing her site sooner (which was on just day 2) I realize that I shouldn't beat myself up over it. Easier said than done. Today I can't forget just how much that little vial of insulin means to our family. Insulin is LIFE. Insulin is my 8yr old daughter humming a little tune again, and a smile back on our faces instead of fear in our hearts. All in a day with Diabetes.

Saturday, May 30, 2009

Crazy Goose & temp basals

Yesterday was a fun filled Friday! Early in the day Maddison and I set out to care for some baby ducks at the rescue. We always stop by the backyard to say Hello to "Goose" first thing before starting our volunteering shift. Maddison opened the gate and "Goose" had a whole new sound. Goose is growing up! He has the "honk" of a grown up goose! Maddison approached Goose as always, to give him a friendly pat. But this time Goose wasn't a nice Goose! Along with his new "honk" Goose has become territorial just as all adult Geese do. Maddison and I laughed as Goose swung his neck around warning us to stay away. Maddison must have missed the fact that Goose was serious. She didn't run as she should have! That crazy goose started jumping around, flapping his wings and biting Maddison on the butt as she tried to get away! Goose wasn't backing down. He turned on me as I tried to get Maddison away. It was actually quite funny, not scary as it may sound. (well, ok, at the time it was a bit scary!) I had to grab goose by the neck and turn him around so Maddison and I could escape! CRAZY GOOSE! Who says animals won't bite the hand that feeds them? I guess Goose is done being our friend. :(

Maddison had her buddy from school come over after volunteering. We had lunch poolside and enjoyed the awesome AZ heat. Hours of swimming later, Maddison was 308!!? We were on such a good streak avoiding a spike after swimming! I'm not sure what went wrong this time! Now we just relax with a movie I guess. It took several corrections to get Maddison down before dinner. To just 205! Maddison wanted to swim again after dinner, so bring it on. Swimming is sure to get her back into good range. Maddison was thrilled to enjoy a late night swim with her favorite furry goldens.

What to do after a late night swim? At 6hrs post swimming Maddison starts to go low. That would be around 2am. Extra extra milk and PB before bed? That choice usually backfires somehow. Instead, I set a temp basal at the 4hr mark to avoid the lows in the 6 hour mark. This night it was a success. Maddion was 160 for her 2am check. Exactly where I want her to be after a late night swim. Of course nothing with Diabetes is always predictable. By 5am Maddison was 108. Awesome, but, thats quite a drop. A few sips of juice later.....set the alarm for an hour to re-check. An hour later never happened. I dont know if I turned the alarm off without checking Maddison or what, but at 9am I leapt from bed in a panic. 52. !!!!!!!!!!!!!!!!! I woke Maddison up and she downed 3 glucose tabs without complaint. Not a good way to start the morning. Today this mom feels guilty! But, also relieved that she was 52, not 32 or.......

When Maddison has this kind of low in the mornings I try to ask her if she felt any different sleeping. Were you feeling weak? Having a nightmare? Sweaty? Hungry? Can you feel anything like that when you are sleeping? She doesn't. Sometimes at night if she dips down under 65 or so I wake her up to try and get her to be aware of feeling low at night. So far to date, Maddison just doesn't feel her lows when she sleeps. I guess most kids don't. Thats the SCARIEST thing with Diabetes and exactly why I stay on top of night time numbers. Now with summer here we are sleeping in every morning. Mornings are not what they used to be. These early mornings are hard to get right, and it isn't because of highs anymore. Now its the lows. That late night swim caught up to us, 12 hours later. Oh, the crazy life of a parent that battles Diabetes!!

Thursday, May 28, 2009

Summer's about to get crazy!

Next week Hannah starts a Volleyball camp that runs Mon-Thursday. I'm excited to get her out and up at a normal time in the mornings! Sleeping until 10am every day since summer started last week was great, but it's time to get out and about. I have had the chance to catch up on sleep, and honestly, I feel like a new person! YAY for sleeping in!

Even more exciting.....I found the PERFECT camp for Maddison. It is a bit pricey at $175 per week (4 hours a day) but I HAD TO sign her up. Its perfectly PERFECTLY made for is the details from the website......

***Arizona Animal Welfare League and SPCA’s Camp Ruffin’ It is a hands-on camp designed to offer active learning opportunities regarding a variety of animals and the care that these different animals require. We want our campers to acquire an appreciation for responsible pet care, as well as the importance of researching a potential pet prior to bringing that animal home. Camp participants learn training techniques, animal care, handling of a variety of animals, valuable healthcare tips from shelter veterinarians, and even get to suds it up with one of our many dogs here at the shelter!***

I'm so excited! Hannah is easy for summer, give her a volleyball and she's happy. Maddison is a tough one and she gets bored easily. We are still continuing to volunteer at the Bird rescue, but THIS camp takes the cake! I think I might even be more excited than Maddison!

Wednesday, May 27, 2009

Low range of course!!

What follows weeks of highs? Just when you get numbers back on track again? When the growth spurt is over? The low range of course! 70-130 the past 3 days. Nothing lower, nothing higher. Checking often. Catching numbers that would soon be lows. Lots of insulin still working, yep, we are feeding the insulin. Each day/night since summer began I have been decreasing Maddison's basal doses for every hour of the day. What was a 5.00 unit per day basal rate is now down to 3.40 per day and falling FAST. Not necessarily swimming related reductions, just summer, post growth spurt and no school reductions. The fun begins.

Last night I fought to keep Maddison in a safe sleeping range from 9pm until 10am this morning. Thats alot of juice boxes. I caught her meter flashing 70's at midnight, 2am, 4am, 5am, 7am and 10am, regardless of ANYTHING I tried. And where is the dawn phenomenon we used to have with school? It just disappeared! Tonight I cut Maddison's basals dramatically and we will work our way back up the basal ladder if we need. I'm not sure which is more frustating....our three weeks of the high range or these scary nights in the low range? **knock on wood** at least we have caught all the pending lows by checking often....thats a GREAT thing! Meter average, 148. Amazing that what was a month ago is no longer. Talk about a constantly changing disease!

Today I assumed I would have an appointment with the breast surgery specialist Dr W mentioned in last nights phone call. I didn't. Instead, Dr W's office just called me to give me the phone number for the practice where they would like me to go for my surgical consult. After a morning of confusion from every direction, I have an appointment scheduled on June 5th instead of the 8th. I'm on the "call list" if there is any cancellations of appointments so I can get in sooner than later. Sheesh. I dont know why everyone in the biopsy clinic and Dr W's office is so confused! Between the two offices they must have called me 10 times today trying to get things set up and get the reports transferred. I will say, they are soon moving into a new office, so maybe thats where all the confusion came in!

On Wednesday nights Hannah plays sand volleyball tournaments near my parents house. So, I have planned to have dinner with my Dad each Wednesday before games. My Dad is doing really well (I'm sure you can tell since I didn't bring it up again) and his foot was not collapsed a few weeks back as he thought. Tomorrow I take him back to the wound clinic for re-casting and results from his last xray. My Dad is still taking some miracle medication apparently.....he is happy and laughing more than I have ever seen these days!

Tomorrow I go in for the other "C" issue, consult with my OB/GYN for the pre-cancerous cervix stuff. ICK. I hope to convince my Dr that I dont need ANY of my baby making stuff anymore. Good riddance. Lets hope he agrees.

Tuesday, May 26, 2009

Yet another phone call today

It was 7pm, Maddison and I were setting out on an evening walk. My cell phone rings, its my Primary Doctors office. What I expected to hear was the voice of the Nurse practitioner in the office that I have been seeing for 13 years. Nope. Its Dr W himself, I was sooo happy to hear his voice! I haven't talked to Dr W since I was diagnosed with Diabetes in 2006. Dr W is the only doctor that took the time to counsel me about using insulin. The Endo that Dr W referred me to back then was a total j-e-r-k. So, I called Dr W's office back and he squeezed me in that day, Saturday after hours. He taught me all about using Lantus, and showed me how to inject that first life saving dose. He must have spent nearly 2 hours with me that day, and I'll never forget the kindness and encouragement in his voice when he hugged me as I left his office. (with my bag of Diabetes paraphernalia!))

Dr W is an amazing doctor that truly cares about each and every one of his patients. Shortly after my Diabetes diagnosis he was diagnosed with Cancer and has been seeing patients only part-time. comes the confusion once again, just from one phone call. My Pathology report just came back to Dr W's office today, which is why he is now calling me. Dr W wants to be certain I see a breast cancer surgeon, not just a general surgeon. He is calling to let me know that if I am agreeing, I am on the "call list" for tomorrow morning. He referred my Path report to the office of a local specialist and they will be calling me in the AM to schedule a consultation within the next week. EWWWWWWWWWW.

Back to the reality. I know that when the doctor originally called me Friday she wouldn't have mentioned PHYLLODES TUMOR unless she was 99% sure that's what I have. She even spelled it for me. P-H-Y-L-L-O-D-E-S. Today's earlier phone call from the Breast Center had me feeling relieved, I had a false hope that this is just another Fibroadenoma because they weren't in such a hurry to get me to a surgeon. Now that I've gotten this phone call tonight, I'm back to being 99% sure that they already know what I have, a PHYLLODES TUMOR. A much bigger deal than all my fibroadenomas in the past. I guess now we just wait for the defining results after surgery. Benign or Malignant. Maybe borderline.

I did take this phone call opportunity from Dr W to tell him how I appreciated the time he spent with me when I was diagnosed with Diabetes. He said he was happy to hear he made a difference to me back then, and told me he usually only hears words from angry patients. So, I feel really good that I got to tell him tonight how much his time that day meant to me. Yet another phone call today changed so much, in so many ways. Back to square 1 I guess.

No hurry

I received a phone call this morning from the office that performed my biopsy last week. They were calling to refer me to a Surgeon. That's it. No new news! That's a very good thing, it seems there is no big hurry for surgery as I initially understood! The way the Radiologist/Pathologist (or whoever the Physician was that called me Friday) made it sound, was that I was being scheduled THIS week for the lumpectomy that is suggested. As in, we got ya covered, and lets do this ASAP. I was all worried for nothing. :) Geez.... the way they made the "preliminary report" sound, I thought I was considered a priority! Priority is never good in the medical world! Of course, there is still SOME chance that this "tumor" comes back malignant...but for now I feel MUCH better knowing I'm not on the STAT to do list.

I did go ahead and call my own surgeon today who has performed 4 of my past 5 surgeries. The soonest available consult appointment is June 8th, 2 weeks away. I would like to just get this surgery done and over with! Once I get something set in my mind I just want it done with so the worry and wondering is behind me. What a BUMMER having to wait two weeks. I guess I should just be happy that STAT wasn't a part of my pathology report! What a huge sigh of relief that is!

Monday, May 25, 2009

Across the cul-de-sac

Maddison spends alot of time with her neighborhood friends. Many times the kids all choose to play here, but sometimes Maddison spends hours playing across the cul-de-sac with her best buddy. Sometimes she's just right next door, or maybe a few houses down. Wherever she is, I have comfort knowing she is just a few houses away. I can pop in to quickly check numbers while she's swimming. I can walk over and tell her what to bolus when she eats. I'm just a few steps away. It feels great knowing she can play without me worrying about lows. Maddison being across the cul-de-sac is precious for more than just easing my mind while she is away.

Its hard to send Diabetes off on a play date. Maddison has a little friend from school that always plays here, because its easier for ME. I'm guilty of keeping Maddison close to home, I'm sure she hasn't caught on to that yet :) Maddison has had some brief play dates in the past at friends houses, most have been just blocks away. But for the most part, I try to encourage play dates HERE, where I dont have to worry. Bad, I know. As of right now Maddison has been across the cul-de-sac playing for nearly 6 hours. I popped over to check her BS when she swam. I reconnected her to her pump for missed basal. I counted carbs in her dinner.....and then turned and left. Just that easy. She's away from my watchful eye. I don't have to wonder or worry at all, I LOVE IT. I'm so happy she gets a chance to get away from me! LOL

As far as Maddison's blood sugars....they have been back to pretty darn good. I'm working on reducing her basal amounts all day. Imagine that. Schools over and blood sugars behave. Interesting. The past 4 days we have slept until 10am! I feel like I have caught up on missed sleep! Of course I still have to check Maddison at 6am, 8am and 9am to be certain she wont go low waking up so late......and YES, I really need to lower those morning basals to match our new sleep patterns! YAY summer!

I've been in a fog since hearing about this crazy Phyllodes tumor stuff. I'd like to say that I'm thinking positive, but honestly I am only a fraction of the time. I go back and forth between a "wait and see" attitude and planning on finding someone to help my husband and children when I'm gone. Isn't that terrible? I won't detail the triumphs in my heart right now, lets just say that I'm a jumble of feelings. But, what else is new, right? I'm anticipating the phone call tomorrow because I work all day and I will have to hear more biopsy details while there. I dont want to hear anything different than I heard Friday, thats for sure. I have alot of questions and I'm ready to ask, but know that I will have to wait until I'm scheduled with the surgeon. Being the knowledge seeker I am, I have been reading ALOT about this tumor they say I have. I think being uneducated about a new diagnosis is scary. Therefore, I continue to read although I want to hide. -Sigh-

Saturday, May 23, 2009

Sweaty exhausting low

Darn chocolate. I thought I had already learned to stretch out a chocolate bolus over at least 3 hours, guess not. Today just me and my girls decided to watch a movie with popcorn and M&M's. YUM. Who knew it would kick me down hours later? I THOUGHT I bolused the M&M's over enough time since it digests sooooo slowly for me, but 3 hours later I was struck with the nastiest low EVER. 50. I've been lower than 50 many times, but this one felt like a 20. Maybe it was a crashing 50, I don't know....but I can tell you I have NEVER been sweaty from a low like this.

Maddison was outside on the lookout for birds of course. I had just dropped Hannah off at a friends house. Josh at work, Goldens besides me. I'm alone, and this time I was actually afraid to be. I wondered for a few minutes if I should get Maddison to stay with me, but of course, I didn't want to cause her alarm. I couldn't find the energy to go get her even if I wanted or had to. I really felt like this low was IT. The low that I wouldn't recover from so easy. It just came crashing down on me, in an instant, I never felt it coming. The sweat had already soaked my Tshirt. Very unusual for me. After 12c of lifesavers I quickly realized those carbs weren't going to touch this low. I could feel my face suddenly turn pale white. I was all out of energy and my legs felt like jello, except they also weighed 300lbs. I hobbled into the kitchen for juice. All I could do was sit on the floor, trying to stay coherent. Finally I drank juice and the hunger set in. I ate anything high glycemic I could find. There is really no stopping this kind of hunger when you are low. Raisins, pretzels, crackers, more juice. 20 minutes later and still in a fog, I was trying to figure out what happened. How much do I bolus now for all that food I ate in a panic?

That was the scariest, loneliest 2o minutes ever! I have never been sweaty when low, so this was a first. I think I'm gonna call it an early night and watch more movies, I can't seem to find any energy after all that mess! No chocolate with my movies this time! How exhausting!

Friday, May 22, 2009

Oh geez

My mind is a jumble of incomplete thoughts right now. I seriously can't make a complete sentence today. Running low for two days isn't helping either. Yesterday I had my biopsy done and today the Pathologist called with a preliminary report. In comes the jumbled thoughts. The pathologist has reason to believe I have a PHYLLODES TUMOR. The biopsy itself cannot reveal whether it is for sure or not. I'm being scheduled for a lumpectomy next week. OH GEEZ! Thats about all I can find within me at this point to say.

I'm confused because in all my reading I find that this type of tumor IS considered breast cancer. BUT, it can still be benign. Benign breast cancer(??????????????????) I hate anesthesia. I've had surgery around 4 times as an adult for these crazy masses and tumors my body makes. Once again I'm in the same place. All my prior surgeries were BEFORE Diabetes. That alone freaks me out a bit. Do I have to intentionally run high during surgery so I don't go low? What does anesthesia do to blood sugar? I typically have a hard time recovering from it with Diabetes I'm worried. Ok, I'm totally freaked out to be honest.

On the Diabetes front, Maddison's numbers are doing well overnight. This first summer morning Maddison was low right after breakfast. Imagine that. With 1.7 units still active, she would have ended up at a -300 blood sugar. Oh GEEZ. Here we go again. Amazing how school and home is so different. Back off the basals mom.

I dont really know what to think today. I don't really know what to say either. I guess we just wait, and I try hard to turn off my thinking mind. I wish they didn't even mention anything about my biopsy. I wish they just said I have to have it surgically removed. Why make me crazy with nervousness when they have to remove it be sure it is a Phyllodes tumor? Talk about torture. I feel nauseated. Seriously.

Wednesday, May 20, 2009

Amazing results

Last night was the first night of aggressive changes for Maddison's overnight basals. I increased all 6 of her basal dosages from 8pm to 2am. I'm usually overly cautious at night, but 250-300's have been haunting me for too long. It just made sense. I couldn't be cautious any longer. As a result Maddison received 300% more basal last night, nearly matching her current 400% rate during the day. The results of each hours basal testing were a damn miracle! Honestly, I'm floored and can't believe it myself. Too good to be true. How could I get it right this one drastic time when I have been manipulating for weeks now?

9pm 128
10pm 108
11pm 118
12am 111
1am 126
2am 124
3am 116
In the clear, I get to sleep for 3 straight hours!
6am 124

Just when I needed a break the most I got it. Someone must be listening to my prayers. Lets hope tonight fares as well. Tonight I will be testing every 2 hours instead of every hour. Last night I felt I really needed to test every hour since I made such drastic changes. If all goes well tonight, I test every 3 hours there after. For now, I need more coffee. This little miracle just made my day, and I know Maddison will feel better today because of it. :)

Tuesday, May 19, 2009

The hardest transition/Damn Diabetes

Changing medications for anxiety and depression is extremely hard. On the first few transitioning days between medications I become someone I'm not, which is exactly why I have put it off for so long. After many months of worsening "depressive" symptoms I had no choice but to make a change. The first two days over the weekend were the worst. I swear I could have just crawled in a ball and slept all day because I couldn't stand myself. I was short tempered. I was tearful, and had no interest in getting out of bed. Who was this person? Well, finally today I was feeling much better. Today I'm not so angry. Today I'm starting to feel like ME again.

Anyone that has suffered from "depression" knows exactly what I mean. For those who don't know about depression, I can tell you that depression is a very tricky thing. Just like Diabetes, depression it isn't anything like what most people think. Depression doesn't always mean you look depressed, or even act depressed. Depression doesn't mean you mope around all day in a pity party either. You can't just snap out of depression, and depression doesn't mean that someone is "weak" because they suffer from it. Enough said, but my point is, I've reached a breaking point where I knew I needed to make changes to my medication. And I'm eager to feel good again. I'm tired of being tired. I'm tired of being completely unmotivated. I'm tired of the person I have become over the past few months. Hopefully I have made the right choice and I will be back on track soon.

Today I'm not so angry with Diabetes as I was yesterday. Maddison's 41 after all the highs just pushed me over the edge I guess. Today I'm more focused and relaxed, knowing I can pick up that log book and make a new decision without hating myself for every wrong adjustment I've made. I guess I just had a melt down. Today I know that I'm doing all I can do. I'm adjusting every single day and Maddison's highs are still persisting. I know I'm playing by the rules, and Diabetes isn't. Yesterday there was nothing anyone could say that would ease my frustration with Maddison's wild numbers. Today I just know that I can't be perfect. It isn't my "fault" that my child is growing and her body is in control. (just measured Maddie today and she grew 1 inch in 3 weeks!) All I can do is try to keep up, and keep her safe from lows at the same time. Thats a very difficult balance right now. Everything is changing. I have just gotten Maddison's daytime adjusted right (besides the low yesterday, I changed a ratio back today and all was fine) and now she is high overnight between
11pm and 2am every-single-night. 300 high. Too high. Makes me sick to my stomach high, but this is life with Diabetes. I will figure it out, just as I have repeatedly the past 3 years. Sometimes I trick myself into believing that it is ME doing something wrong in managing Maddisons Diabetes, when really, it isn't ME at all. It's just the damn Diabetes being Diabetes!

Monday, May 18, 2009

41 today

This afternoon Maddison went to see the school nurse for feeling low. She was 79. Her last bolus was about 2.5 hours prior. Our school nurse is awesome, she has learned to listen to Maddison's feelings, not the number. She gave Maddison one glucose tab and sent her back to class. Exactly what I would have done. Twenty minutes later Maddsion came back, she was 41. Looks like that 400% basal rate is making its way back down. Maybe its the Az heat, it was already over 100 degrees today by noon. Whatever the "reason" I'm feeling very angry today. Today I'm done with Diabetes, as I often say.

Last night I had a good chance to test overnight basals for Maddison. She was going to bed at 110, nothing active. She's been spiking somewhere between 11pm and 2am, I adjusted some basals Friday for that. But, of course I haven't actually been able to see any results over the weekend. The weekend isn't the same as weekdays. Damn Diabetes. Why is it so complicated? So last night by midnight Maddisn was 130's and by 2am she was 223! I didn't expect that kind of increase, I expected MAYBE 60 points. I wondered if it was the turkey and cheese she had shortly before bed because she was "starving." Who says "free" foods are really free? I betcha that damn cheese caused some resistance to her basals last night. I'm angry that tonight I will have to repeat testing before deciding what to change, which means another high is expected. I have never been able to just blindly adjust a basal without being SURE it wouldn't cause a low overnight. I just can't do it. So tonight, we repeat.

I'm angry that Maddison's meter average shows 170. Today, I'm angry that Maddison was 41 before lunch. I hate this disease. I hate what a 41 feels like. I hate that Maddison is 8yrs old and deals with highs and lows, everyday lately. I hate that so many children do, every day.... and no one understands how that feels, or how it leaves its mark on a parents heart. I hate feeling like a total failure because I can't get anything right these past 4 weeks. I'm just so mad at 41 today! I think I need a chill pill, really.

Sunday, May 17, 2009

Look at goose now!

Remember Maddison's buddy "Goose Goose"? Well look at him now......
Turns out his forever home is right in the backyard of the bird rescue itself. He's staying! Maddison will never have to say goodbye to this feathered friend! The last week has been very busy at Fallen Feathers bird rescue.....Look at the new friend Goose Goose has....
A very stinky but friendly Turkey! Some people wanted a turkey as a "pet" and decided they couldn't keep him any longer. I wonder if they planned to have him for Thanksgiving dinner then decided they love him too much?

$2 secret in a box

Check out these bandages. For $2.00 per box this is a miraculous little find. After 6 hours of swimming yesterday you can see the bandage is still holding strong on Maddison's arm over her pump site. I cut a hole in the center of the bandage where the padding is, and it works perfectly. We have tried everything to get Maddison's sites to stay on during the summer swim season. I think this little bandage just made my day! First I was just applying a bandage with each swim and then removing it after. The bandage would hold sometimes and not others. The secret I have just found is applying the bandage right away with a new site change. We apply IV Prep wipe with every site change to get the sites to stick normally, so with yesterdays new site I immediatly covered it with this waterproof bandage as well. I guess the IV prep wipe is the secret to get this bandage to stick! And stick and stick! YAY for a $2 miracle in a box! Summer just got a little bit easier in our house :)


8 Things I’m looking forward to…..

1. Spending more time with my girls this summer
2. My sister coming to visit in June
3. Hannah starting Sand tournaments this week
4. Maddison starting camp in June (through the ASPCA, pet camp!)
5. getting back in shape
6. Sleeping in this summer
7. Dinner with my Dad every Wednesday this summer
8. vacation

8 Things I Did Yesterday……

1. yard work
2. adjusted basal for Maddie and changed 2 sites
3. had a dinner party
4. started back to interval workouts
5. Took Maddison to volunteer at the rescue
6. worked on my tan :)
7. complained about laundry, then decided it can wait
8. spent the day by the pool with my girls

8 Things I Wish I could Do…..

1. Cure Diabetes
2. Finish my Masters
3. have a job that I LOVE
4. Volunteer my time in many places
5. Sleep 8 straight hours every night
6. Stop worrying
7. Promise my kids health and complete eternal happiness
8. make Maddison love school

8 Shows I Watch…..

1. Dr G Medical examiner
2. Animal planet, anything Maddison forces me to watch :)
3. Trauma Life in the ER
4. Ace of cakes
6. American Idol
7. Mystery diagnosis
8. Cookoff challenge

8 People I Want To Read 8 Things About…..


Friday, May 15, 2009

Fabulous, fantastic FRIDAY

You can tell by my blog title. Maddison's field day today was amazingly FANTASTICALLY FABULOUS. Not one low kept Maddie down. Not one high either. How does THAT happen? I am soooooo happy I got something right for a change. Dont you just want to shout out loud on days like these? THANK YOU THANK YOU THANK YOU for a good day with all this commotion!

After school Maddison even went swimming, 3 hours worth. Yep, still no lows. Thank you Gatordae. I re-connected Maddison to her pump every hour and bolused missed basal which stopped the later highs we used to see with swimming. But wait...It only gets more unbelievable. PIZZA for dinner tonight! I know you totally must think I am making this up. Surely Diabetes doesn't behave with all this excersize, food and fun! But today it DID. Next, Maddison was off to the neighbors house for a late night birthday party. Bring on the chocolate fountain!! YES!! A chocolate FOUNTAIN.....yummy stuff to dip.....strawberries, banannas, pound cake......OH MY! Maddison was 160 going into this chocolate craziness. (not that much out of range anyway) Then the birthday party was out to the cul-de-sac to play kick the can. Late night running and hide in seek in the dark.....Lets hope I didn't just ruin tonights numbers by saying today was so FANTASTIC and FABULOUS!! But it was! YAY for a good day despite it being every parents worst nightmare!

Think PINK!

This morning I had an appointment at a new Breast Care facility. You should have seen this place! It is b-e-a-u-t-i-f-u-l!!Outside the building is a huge Pink Ribbon sculpture for breast cancer. Walking in to the facility it gets even better. The colors are focused around PINK! Brown, tan and the PINK cancer prevention color. How cool is THAT? Crystal chandeliers, dim lighting, glass walls that have pink illuminating lights filling them with color. This place is like a medical resort. Even the carpeting, resort style furnishings and art upon the walls is gorgeous, with PINK! I've had many breast ultrasounds in the past, but this place was comforting, not cold and lonely. I'm so impressed!

After registering at the desk (all the staff wears PINK!) I was taken into a small curtained area to change. No paper gown here! They provide white cotton resort style robes WITH a Pink Breast Cancer emblems! Anyway, I have ultrasounds to check my left breast mass every year. At this new facility the Tech was telling me the Radiologist will be right in with the results. How nice is that! Good thing she told me, because if the Radiologist came in immediately following the procedure I would have freaked. I would have been sure I was D-e-a-d!! I expected this left mass to be fine, it always is, and the biopsy 2 years ago was fine. What I didn't expect was a mass on the right side. I had no idea. This new mass is in an area where I had my first lumpectomy YEARS ago, like in 1999. I have to call today and schedule a biopsy. On my right side. Where I totally did not expect it. -Sigh- Where do my health concerns end?

Laying there waiting for the Radiologist to come back in with biopsy info, I suddenly felt low. I wasn't. I was high at 187. I've been running high for a few weeks now. I think hearing BIOPSY again induced panic. All I could think was I have to get to field day people! Can we hustle? I don't think I like this PINK resort style look so much anymore. I stressed about having to schedule yet ANOTHER appointment. I'm not worried about the biopsy. The procedure itself doesn't worry me at all. Just another health concern for me. I don't get it. I'm tired of labs, procedures, appointments...interfering with my days off work. MY time. Enough is enough.

I decided not to go to Maddison's field day today. I'm not sure why. I guess today I feel differently. Today I feel like Maddison is in good hands. I know she is. Our school nurse is awesome. I'm sure Maddison will have a blast and be fine. I knocked 10c off her breakfast and decreased her basal rate. Its crazy how the way I feel changes day to day. Yesterday I was a mess thinking of field day. I was SURE I HAD to be there. I was SURE Maddison needed me. Today I woke up and felt like she can handle it herself. Both Maddison and the nurse. I called the school nurse this morning to let her know I would be at an appointment if she needed me. She informed me that she gave the field day people a juice box. If Maddison even feels low she is to drink it immediately, and the nurse will be called to come to her. That made me feel better. The concern of a serious low was still there of course, but today for some reason I'm not all freaky and paranoid. (I think its called bye bye PMS) I have to let go some, I know. Some days like today I can without a second thought. Other days I cling on, overcome with worry and feelings that Diabetes is out to get my Maddison when she is just trying to have fun. Those days Maddison just can't get rid of me. I'm right there hiding somewhere in the shadows just watching. To make sure she is acting fine. To make sure she isn't going to crash and collapse with a low. Alot of days my mind can really work overtime. My worst fear as a parent that has a child with Diabetes is not being there if she needs help. I dont want Maddison to pick up on my feelings. I dont want her to feel dependant on me watching out for her. Its hard, this disease. Today I know Maddison will be fine during field day. Funny how yesterday my mind convinced me otherwise. I should be carrying on with my daily chores while the girls are at school.......I feel better having blogged that all out! Vent, move on. Just another day of my crazy emotions released!

Thursday, May 14, 2009


103 degrees that is. YIKES. There is no turning back now.....Summer in AZ is HERE! For the next 5 months we are likely to be in the 100's. Even more likely to be in the 105-118 range. And, I love it. (when I'm beside my pool or inside the house!) Heat and insulin don't mix, so we will most likely have to start changing our pump sites every 2 days. Tomorrow Maddison has Field Day. In other words, tomorrow will be the test! Will blood sugars go crazy from heated and weakened insulin? I'd hate to find out the hard way!

Field Day. Oh-my-gosh....FIELD DAY! What to do? Field day is tough enough to manage without the 103 degree heat. Lets think here. Today was Day 2 of 400% basal rates for Maddison. At morning check today Maddison was 71 with .3 active. Hmmmm......gotta decrease somewhere a bit for tommorrow. Now add Field Day. DAMN! I'm also thinking 10c uncovered before field day begins. Gatorade mini bottles.....perfect. I asked the school nurse today how she would like to manage Field Day tomorrow. She told me that if I give Maddison a nice big breakfast.........STOP-RIGHT-THERE......Ummmmm, mom logic says if I simply give Maddison a nice big breakfast she will have ALOT MORE insulin in her while she is running around wildly for morning field day. A nice big breakfast isn't the answer. I wish it were that easy. In fact, a big breakfast would probably be the enemy. Anyway, after agreeing with how the school nurse will handle field day tomorrow, I thought of a million other concerns.

To name a few....Water. Medtronic isn't waterproof, it is water "resistant". Last year Maddison wanted to take her pump off for the water fun on field day. Good thing she did, those kids find a way to be DRENCHED in water. So, the pump will be off.....for 3 hours? Oh geez. Snack? Everyday Maddison's class has a snack at 9:30am because they are the last grade to have lunch at 12:30pm......ok, just bolus half for the snack and hope for the best. Ice cream? You know somewhere they will have some crap for the kids to eat on field day. Cookies.....who knows. It better not be snocones! I will have to come prepared with my sugar free syrup if it is! LOL. Who's got the sugar anyway? Who is holding fast acting sugar for Maddison if she needs it? The nurse's plan? Give the field day people her cell phone number. If Maddison feels low, she will be called and will be there in an instant. WHAT? Um......I asked the nurse what happened to "duty" teachers carrying fast acting sugar to recess, PE etc. Her response? "We did that in the beginning of the year, but not anymore" OH-MY-GOSH....are you kidding me? Like a crashing blood sugar (or passing out and seizing) can wait for a cell phone call. Um...NO. That isn't going to work for me!

I asked Maddison to carry glucose tabs in her pocket tomorrow....she told me bathing suits don't have pockets. -Sigh- Its not a tab treatable low that makes me worry....its the possibility of an unidentified low that makes Maddison drop to the ground, unable to EAT the glucose tablets. Lets think....103 degrees. 3 hours of running, jumping, sprinting, climbing, excitement, 400% basal rate that could change at any moment.....UMMMMMM.....YEAH. I'm thinking someone needs to have Glucoburst nearby. Cake Gel, honey, liquid sugar, powder sugar, SOMETHING besides a frickin cell phone! Sheesh. Field day is guaranteed to be a ton of fun for Maddison, IF we work it right and avoid lows!! I just want her to feel her best. No lows stealing her fun. The problem is planning for all this from a parents view. So much to think about. And no one really understands. Which is why after my Ultrasound in the morning I will be headed to school, in the 103 degree heat. Lucky! My day off....I will make sure Maddison has her fun, while I hide in the shadows. A finger poke here, a snack there.....I'm not relying on a cell phone call or the school nurse. Mom will have Diabetes at school tomorrow. Can you imagine how often someone might need to make a judgement call with field day for 3 hours? (take the pump off, bolus missed basal, high? low? snack? site fell off in the water?) The school nurse can't sit around and wait all day for things to come up. Mom can. And I will be happy to do so. I'll see Maddison have a blast, and I will love every minute of it. And, I hope I get a tan :)

Wednesday, May 13, 2009

3 weeks later

After 3 weeks of making adjustments nearly every single day, Maddison was FINALLY in range all day at school today. HALLELUJAH, HOORAY, YAY!!! THANK YOU, THANK YOU THANK YOU JESUS!! I didn't know how much longer I could take this craziness. **Knocking on wood** I hope for ANYTHING tomorrow that is nearly the same. 3 weeks later, I can't believe how long it takes sometimes to get mornings right. Maddison is currently getting 400% more basal in the morning hours than the norm. That always amazes me! Of course, the last day of school is next Thursday, which is likely to bring about everything needing to be changed AGAIN, so be my life of chasing numbers. Yes people, Diabetes really IS like this for most kids!

Tuesday, May 12, 2009

Its only 10am?

Last night Maddison was again 80 going to bed. 8c of juice later she's a nice 128. Perfect. I decided to sleep a whole 4 hour stretch being confident in her overnight basals. At 3am HI (over 500) flashed across her meter screen. Just .1 Ketones thank goodness. No reason for the HI. It just is, I supposed. Or is that a rebound? An impending illness? Funny how HI happens when you choose to TRUST Diabetes for the night. I decided to leave Maddison home from school today since it's Josh's day off and she was still 250 by 7:30am. Something weird is brewing. I just know it.

Yes, 7:30am is when I leapt from bed this morning-LATE after checking blood sugars every hour last night. I couldn't sleep for many reasons after the HI. Earlier in the night before I went to bed, my Sister called to tell me my Dad thinks the arch of his foot collapsed, as is possible in Charcots foot. That alone made me wonder how my Dad was REALLY doing. Is he in pain? What will this all mean? Surgery? Can he recover from surgery? How is his blood sugar? Did he even check it? What if he has an ulcer or something in there? What if his arch did collapse and there is a bone protruding? He can't really even sense pain in his feet! What if he is developing a bone infection now?

Besides thinking of my Dad when I was supposed to be sleeping, I was thinking of Ms Maya and her trip to the ER. Feeling sad that she had such a hard day. Worrying. Imaging how tough days like these are when you have 3 little girls so close in age to care for. Hoping Addy doesn't get sick too. Diabetes and illness is scary. I was just thinking too much as always. I was wondering why my blood sugar has been screwy the past week. Wondering why I hoovered in the 200-280 range all day, and WHY am I STILL 280 going to bed tonight? Then, of course I drift off to sleep and wake up to Maddison's HI on the meter. Some days Diabetes is everywhere I turn, it haunts me from every direction.

My sister and I are trying to convince my Dad to get to the wound clinic TODAY instead of as scheduled Thursday. No go. Today he says he's fine. So, I called the wound clinic and let them know the situation. I'm waiting for a call back from the doctor. I stopped by to talk to my Dad this morning before work to find out the real deal with his foot. He feels fine, doesn't have a fever and said yesterday his foot was painful but not today. He hasn't checked his blood sugar since last week, he doesn't normally unless he is sick, so that wasn't a surprise. -sigh- Being late to work this morning I was warned by a co-worker not to take the freeway. I'm sitting at a red light, and got rear ended! Just bumped actually. Not a scratch on the car. I literally pulled over, talked to the lady for 20 seconds and we were on our way. Now I sit at work with tight shoulders and a slightly stiff neck. Sheesh. Its only
10am and I desperately want this day to end!

Monday, May 11, 2009

Miserable Monday be gone!

Maddison was so happy this morning as she told me "only two Mondays left" before school is out for summer! No miserable Monday today....Maddison is too happy that school is quickly coming to an end! Not much new around here, but I did make progress with Maddison's numbers on Saturday. Even though it was the weekend, I increased her morning basals all around. I also decreased her ratio's back to what they used to be before the lows hit last month. Low, high, high low. So much for the three weeks of GREAT numbers. Lows, now highs. Life with Diabetes in just three words.

Sunday was nearly disastrous after breakfast for Maddison though. We caught a 140 an hour after breakfast that I knew well enough was not going up, but crashing down with 2 units active. Maddison got an un-bolused bowl of LUCKY CHARMS that morning! Guess the basal rate that was better on Saturday was WAY TOO MUCH on Sunday. Interesting. Who would have known? Same breakfast, same time of day. That left me with questioning back to school today. Decrease? Flip back to Friday's basal rates? I decided to lower her rates SLIGHTLY for today going back to school in fear of a repeat of yesterdays craziness with the crashing low after breakfast. Maddison still hit 190 by her morning check this morning, much better than 290's from last week though so I'll take it! Tomorrow, I increase basals and see what we get. Who would ever know that we really, seriously DO chase numbers like this? Yep, thats the name of my blog alright!

Guess what Maddison's 2nd grade is doing for the LAST DAY OF SCHOOL next week? They are walking 2 blocks to the SWIMMING POOL!!!! WHY WOULD THEY DO SUCH A THING?? I mean really? On the last day of school? So, looks like I will have to pack up my pool bag and PRAY that we find something to keep her site attached for her last day of school. (which also includes pizza and celebrating summer birthdays with CAKE AND ice cream) Are they trying to make me turn grey or what? How am I supposed to make myself be invisible while managing numbers on a last day of school like that? It's hard trying to not be seen on field trips, but this one really makes it hard! Oh well, I'm just happy miserable Mondays are gone!

Sunday, May 10, 2009

From Mommy to Mom

Every Mothers Day I think about how I used to be "Mommy" and how I miss being called so. These days I'm just "Mom" and some days it breaks my heart. I miss hearing the pitter patter of quick little feet running up and down the hall, and the sweet giggles of my little girls as Daddy chased them. I miss the hours of reading books in bed with my girls because they each needed "one more" before they could fall asleep. ("Pleeeaasssseeeee Mommy") I miss pic-nic days at the park, blowing bubbles, teaching about the flowers, the trees and the cow that says "Moo." I miss my little girls, but oohhhhh how I love to see the people they are becoming!

Last night the girls and I spent the evening with some very special little girls. (Those precious little Candy Hearts) The Rose family! AKA Addy, Kaelyn and Maya. Wendy FINALLY took me up on the offer to watch her girls for the night so she could have a much needed, long overdue :) night out with the hubby. Hannah loves, loves little kids, especially the Rose girls! Maddison is always dying to be the big sister for a change, and she still tries to convince me that she needs a baby sister or brother. YIKES!(Maddison is also sure that "Addy looks up to me because I have Diabetes too" So, the girls and I were excited all week for our babysitting night to come. I enjoyed every minute of those super cuddly girls in their pajamas! Thank YOU Wendy!I felt like a "Mommy again!!"
The best thing about being the care takers for a night (besides the fact that Wendy and her love got a date night!) was seeing Hannah take charge as the mommy figure. She swooped up each little one when they "needed" her and tried to meet each little ones desire for play and attention. Seeing Hannah grow up into such a caring and understanding young lady makes my heart
H A P P Y!!!!! From "Mommy" to "Mom" never felt so good! Maddison had a great time laughing at how funny little ones are. She laughed at the way the girls talked to each other. She laughed for the way they got crazier and more energetic as they zoomed around the house. And do you know what Maddison said to me? She told me the sound of baby feet running on the wooden floors was cute!! Ahhhh from "Mommy" to "Mom" never felt so good! I miss my little ones, but oooohhhhh how I love the little ladies my girls have become!

Today for Mothers Day I was given BEAUTIFUL new portraits of my girls! Grandma snuck the girls off to the mall on early release last week for Josh while he worked. The gift plan of portraits for Mom on Mother Day......they know me so well!!!! A portrait reminder of how blessed I am for having 2 special girls.....

Of course Maddison also had a special Mothers gift made in class, those are always a tear jerker! We spent this Mothers Day with my Mom and Dad. My Dad is in awesome spirits by the way! I don't know what Neuropathy medication they have him on, but WOW, he must be feeling good! He's hobbling around well on his "walking cast" and is eager to have it changed again this week. Anyway, my sisters also joined us for dinner at Moms. This Mothers Day was very peaceful and relaxing, surrounded by family. I hope all Moms out there had a relaxing day!!

Friday, May 8, 2009

Day 4

Maddison's highs started Tuesday. Today is day 4 that she has remained high after breakfast, all the way through coming home at 2pm. Then she DROPS. The first day after the highs I made basal increases for ALL the morning hours, which did nothing. Still 240's. The second day I got aggressive. Made changes. No improvement. 260's danced around all morning that day, laughing in my face it seems. The 3rd day I really went wild with the increases for morning hours, which leaves us with seeing that result today, day 4 of crazy highs. You would think I would see SOME improvement. Nope, today we saw.....290's. CRAZY how that happens! Is this insulin like water or what? TRIPLED basal rates aren't budging anything. Where do I start now?

Day 4 of highs is bad timing, because tomorrow is Saturday. Basals are always lower for the weekend. So do I leave it as it is? Do I increase it anyway and check often? Can't we just have a day 5 without highs? It always happens this way when Maddison gets sick, grows or stresses. She will stay high regardless of changes all week. Then Saturday comes, and numbers are nearly in range. Sunday is good. Monday I debate over which frickin basal pattern to use? Weekday or Weekend? Most Mondays Maddison's body will follow the weekend normalness of numbers. By Tuesday we are back to full swing weekday patterns of higher basal rates. If she runs too high, I make changes. By the time I figure it out for the week its Saturday again and everything starts over the next week. I dont know which damn pattern to use from day to day! Its really driving me crazy!!

Thursday, May 7, 2009

The eye exam

Maddison had a meltdown during her eye exam today. I wasn't surprised after last nights misunderstanding, although I think the trigger for the meltdown was the fact that she ran in the high 260's again all day at school today. Then she crashed to 60 around noon, after I got too aggressive and apparently overdid a correction on this early release day. I swear, the child steps foot off school grounds and everything changes. I was at work, and Hannah was told by phone to give a bit extra insulin for Maddison's high since she hadn't budged all day. Damn basal increases today didn't touch her highs AT ALL. She left school grounds and her insulin decided to work I guess, sending her crashing. So, Maddison running high again today left her with a tummy ache, dark circles under her eyes, muscle aches and a yucky mood. By the time we were called back to start her eye exam she was a mess. When the Tech started the Glaucoma test blowing air in her eye, she lost it.

There was no explaining. Maddison was sure we were out to torture her. I guess having been in the hospital and ER too many times she isn't so trusting anymore. She cried. She refused to do the other eye. Then the Tech threatened her telling her that if she didn't co-operate they would have to put some (what ever) stuff in her eyes to complete the Glaucoma test. GREAT. Just what Maddison needed, to be threatened on top of her feeling like crap, on top of her tummy ache, on top of her fear of what an eye dilation really is. Long story short, the Doc saw us anyway and wasn't concerned about the Glaucoma test for an 8yr old. Sheesh!

The Doctor was great speaking to Maddison and explaining all the tests. She calmed down right away when she realized we weren't going to blow her eye out. I really liked the Doctor until he asked me "if Maddison's Diabetes is controlled." All I could think was OH GREAT. His idea of "controlled" and the reality of a child with Diabetes is two different things. I felt totally stressed from that one question, and I knew the A1c question was coming.

Doctor: "What was her last A1c?"

Me: "7.3%"

Doctor: "ohhhh, thats really high."

Me: Thinking WTF!!?? Do you know how hard a parent works for an A1c!!!!??????
I was SHOCKED by his response. I almost dropped dead right then and there. Is he kidding me? Does he know that Pediatric Endo's are pleased with anything under 8%???

Doctor: "Once you start to get up that high and into the 8's you will see alot of vision fluctuations"

Me: Still can't speak

Seriously, I couldn't speak. I wanted to tell him that children aren't expected to have A1c's as low as adults. I wanted to SCREAM out that he has no idea what a "high" A1c is for a child. I wanted to cry. I wanted to hide. I felt entirely responsible for Maddison's recent vision issues and headaches. I felt like a total failure, and this guy doesn't even KNOW reality about children and Diabetes! Anyway, Maddison ended up with a very slight near sighted right eye only. Not enough to even correct with glasses. We passed on the dilated exam as the Doc suggested, it just wasn't necessary.

The end result is this: Lower Maddison's A1c to an "acceptable" range to avoid any further vision disturbances and headaches. Try to better control fluctuations in blood sugar. Doctors orders.

WOW. I walked out of that office today feeling like a total failure, when I know well enough that Maddison's Diabetes is in fact "controlled" to the best of my ability. Controlled quite well for a child, per the ENDO that actually assures me I am doing a good job. The ENDO that KNOWS Diabetes and children's acceptable A1c ranges. I have to keep reminding myself of that! I agree that Maddison's recent vision issues are probably related to running too high the last 2 weeks. But thats 2 weeks. I can't feel like I've "hurt" her because her blood sugars are wild and changing lately. But, I do after listening to this doctor today. Punched in the stomach. Lost my breath. Stabbed in the heart. I know these are all just words from an eye doctor. But it feels like so much more than that. To me, it is more than just words.

Scary stuff

My poor Maddie. Last night we were talking about her scheduled eye exam today. She broke down in tears. #1 I think the way I explained a dilated eye exam was TOTALLY a poor choice of words! I feel so bad! I was trying to figure out why in the world she would be afraid of an eye exam, and as we talked I realized that I told her the eye drops used for dilation would "open up her pupils" so the Dr could see the internal structures of the eyes. YIKES. Talk about wrong way to say it! Turns out Maddison imagined it just the way I made it sound! Like her eyes would be "opened up" and examined!!!! OMG! I can't believe I didn't think about what I was saying before I explained it that way!!! After a long talk Maddison now understands what the eye exam will REALLY be like! I would have cried too!

The sad part is, Maddison asked if her Diabetes could be making her go blind already. Needless to say, this was reason #1 I cried myself to sleep last night. Its scary to think that Maddison wonders these things.

Strange thing, Maddison had ice cream AFTER pizza last night. At bedtime she was
122, PERFECT. She has been running high all day at school this week, so surely I wasn't expecting her to be in range at bedtime. I was expecting a delayed ice cream high around midnight, 6 hours after she ate. I was flipping through "ice cream records" to check the time I should increase her basal rate to avoid that high. I decided I HATE to do that when she is sleeping, so I chose to catch the high and double correct it instead, knowing the high would be resistant to a normal set correction factor. At midnight she was 130. At 3am she was 133. At 6am she was 148. No high ever came from ICE CREAM??!! How is that possible? Scary thing, imagine if I DID go with an increased basal rate to stop a high that wasn't coming. Damn Diabetes. 7am before breakfast she was 233. WTF!!? That only happens once in a blue moon, or, if she's getting sick. Weird, totally strange and scary thing.

More scary stuff. Got a message left yesterday from my PCP. Reason #2 I cried myself to sleep last night. My last weeks Pap smear shows pre-cancerous cells. I have an appointment scheduled next week with my GYN. I've already decided to just take it all out, REGARDLESS of anything they may suggest. Since the age of 19 I have battled Endometriosis, recurrent ovarian cysts, cysts that rupture, ovarian masses, and have had 3 breast biopsies for masses. All come back fine. I have had 3 Lapraoscopies to clear chronic pelvic pain and adhesion's resulting from my Endometriosis. I'm done. I'm not having anymore children and the risk is too high. I have every symptom in the cervical cancer book. I just want it all out.

Scary stuff. I'm kinda numb today. All I can think about is that my children need me now, more than ever. Hannah is nearing the difficult teenage years. She needs her Mom. Maddison, how could anyone ever care for her the way I do? I can't even stand to think of anyone else having to learn to manage her blood sugars. I know, I'm probably fine. But scary stuff makes you think even scarier thoughts.

Monday, May 4, 2009

20 minutes in

20 minutes into Monday back to school, my cell phone rings. SCHOOL NURSE pops up on my caller ID. Seriously? 20 minutes into the school day? Maddie's school nurse is telling me Maddison couldn't see her book work clearly this morning. "She says her eyes are blurry and the letters are all jumbled." So, the nurse checked her blood sugar. 153, just 1 hour after breakfast. GREAT. That number could go either way right about now considering yesterdays 7 hours of swimming. Concern #1 for this Monday morning, the wrath of delayed exercise lows. Maddison's blood sugar was good so the nurse checked her vision. She told me that her result came back as 20/50. What? Maybe all the chlorine yesterday has made Maddie's vision screwy today? No, no....I have some doubt. Now that I think about it, Maddison has complained of "blurry" vision a few times lately. Usually when she wakes up, as she did before she was diagnosed. The difference is, this time the blurry vision isn't related to high blood sugar. I guess we are off to the eye doctor today.

Last night we made it through the night without any lows. I set a temp basal for Maddison, something I have never gotten right. Not the best result, but she didn't go low from all the days swimming so I was relieved. Maddison hit 230 around 3am, not so bad considering I usually REALLY mess up the temp basals sending her to the 300 range and beyond. With a little more manipulating the temp basals we should be able to figure it out. Hopefully quickly.

Sunday, May 3, 2009

My very long "poem"

Waiting and wondering
sleepless nights standing watch
Silence in a dark, quiet house when I should be sleeping, peacefully
sleeping peacefully is no more

the day that changed life from "simple" to complex
That one finger poke
that one tiny drop of blood
changed everything

She is so strong and brave
while I fight to stay the same
Most days are the norm, blissful to be alive, we carry on
Life is good
we defeat this demon with every dose
every dose keeps her alive
and keeps me on my toes
not for one moment can I let my guard down
for if I do, it will take control

She is so strong and brave
for what she endures
the highs
the lows
every-single-day she endures
the pokes
the needles inserted deep into her tiny scarred hips and arms
without complaint

Sometimes you hear her cry out it pain
the blood pours
you hit a vein
a muscle
and caused her this pain
my heart breaks
you cant take away her pain

the headaches
the shakes
the hunger
the confusion of it all
WHY? WHY does my sweet child have this crazy disease?
Will she be here tomorrow? Or will Diabetes defeat?
Quietly in the night, it waits
for she can't feel you now
Mom must wait
To keep you safe

Some nights like tonight are pure torture to the heart
Did I do what was right?
How do I know what her little growing body needs?
maybe its okay for now, but by 2am that could all change

"We should be thankful it isn't cancer"
But did you know?
This is a lifetime disease
the battle is never won
every day you poke and draw blood
hoping today is like yesterday
to make sense of it all
Unlike cancer we have a "promise" for tomorrow, yes we do feel blessed
but that doesn't make it hurt any less

A "promise" for tomorrow
only if you make the right adjustments today
for a tomorrow that is never the same
A disease that has no promise of what tomorrow may bring

Most days she is the same old "Maddison"
she skips around the neighborhood with a gleam in her eye
she's happy, she talkative, she loves her friends, her pets and her life
she has dreams of being a vet, an animal lover she is
she will make a difference in this world, I have no doubt

Some days she isn't who she really is
she's worn down from the highs and lows
she's tired, as her little body cries
NO MORE! I don't want to do this anymore!
PLEASE! No more lows, I just want to run and play
I don't want this diabetes to get in the way!
I want to swim, jump, run and play! PLEASE MOM!
Take my Diabetes away!

Silently my heart shatters
the tears begin to flow
I take her in my arms and try to soothe her pain
For I know, I live this life too, I feel the same
But I am an adult, I can handle this life.
No child should ever know how this feels

Its not the pokes that hurt the most
its not the highs
or the time stopping lows
Its the exhaustion of it all
every minute
every hour
of every day
it never goes away
every day Diabetes is here

what hurts the most is what you cannot see
the feeling different
feeling alone
having to worry about numbers
right now
in the future
the questions
the stares
the ignorant remarks
the judgements
Do they really think I did this to my child?
Does she look like she is inactive?
Does she look like she needs to follow a diet?
Are you kidding me?
Educate people, educate yourself before you open your mouth
and hurt my child with your ignorance
The answer isn't in a pill
it isn't in skipping the sugar
it isn't in "out growing it"
this isn't our "fault"
Google it, google TYPE 1 DIABETES, maybe then you'll "get it"

Her tiny heart could be taking a beating
her nerves
her eyes
her kidneys
from the highs and the lows

She knows about Grandpas battle
30 years of Diabetes has left him
on Dialysis
a finger amputated
disabled with
heart disease
nerve damage
You name it
Now he faces possible leg amputation
reliant on others to get through each day
Diabetes has taken him, piece by piece
at no fault of his own
He played by the rules
But Diabetes isn't fair

She believes in herself
she knows that won't be us
for today in 2009 we have much better knowledge
she loves her insulin pump
as much as your child loves their Nintedo DS
Its attached to her 24/7
its her lifeline
her plastic pancreas
Mom must make it work

A plastic heart?
imagine a plastic heart
Would you know what your body needs?
Would you know how to make it work?
Would you know how to adjust for better health
day in and day out?
By the hour, the minute, through sickness?
Through exercise, stress and growth?

Thats what I do.
It tiring
Its endless
Constantly changing
I am my child's health

I feel guilty
day in and day out
move on
try to leave the numbers behind
when you know down the line
that all you can do is your best
and pray that Diabetes won't hurt her
her eyes
her heart
her legs
her well being

Is she stronger today than she was before that day?
You bet
has diabetes given her more in this life?
You bet
Has it taken from her?
Has it made her who she will become?

A little more caring
a little more understanding
alot more resiliant
alot more courageous
a little more of everything
Thats what my Maddison is

2 sites in 2 hours

How are we going to make it through summer? This weekend was filled with water fun. Yesterday afternoon Maddison lost a 2 day site to the neighbors jacuzzi. Little sucker just fell right off. Today was another fun filled cul-de-sac day with swimming in our pool, their pool, their jacuzzi. In this neighborhood the kids like to make the rounds. Two sites in 2 hours.

Downfall of the pump, you can't just go siteless. Maddison needs to be re-attached and bolused her missed insulin each hour or two. Today the neighborhood kids swam for 7 hours straight. Our pool. Their pool, the favorite "cyclone" in the jacuzzi. At 5pm I changed Maddison's site after the 1 day site gave out and slipped right off. I had no choice but to do a new site in the middle of swimming fun. An hour later the new site was found floating atop of the jacuzzi. Changed to a new site, bolused the missed basal. My exhausted girl is in bed and now I sit watch. Its 9:30pm and I have to wonder how this crazed day of swimming will fare tonight. I can't set a temp basal now, because the post swimming high may appear. I cant set a temp basal for a future time, its either now or nothing. I have a plan to wake at 2am so I can set a temp basal reduction. Who knows if thats the right timing? Why oh why is Diabetes such a guessing game? So far, no lows with swimming yesterday or today (knock on wood) thanks to being extra diligent with the Gatorade and careful watch. Tonight, I'm not so sure.

Last Endo appointment I asked about the swimming spike. Maddison soars to the 300's about 2 hours after swimming. It was suggested that I increase her basal rate for an hour to cover that spike. I can't bring myself to do that overnight when Maddison is sleeping. So, I watch. I wait. I anticipate. So far with replacing an extra .1 with the missed basal we haven't seen that spike. Score 1 for mom. I'm hoping I won the swimming spike battle. But I'm not so sure tonight of the lows that may creep up after 6-12 hours from all the swimming fun. The 2 site changes in two hours today has me wondering how we will manage this summer in the pool for hours on end? I've tried all the fancy dressings. They slip off sooner than the site itself. I just dont know. Another thing to plan for.

At Maddison's last Endo appointment her doctor viewed her sites as usual. She commented on how "unscarred" her sites are. The endo said she is impressed with the lack of scarring and skin irritation from sticky solutions. We don't use any special sticky solutions. Never had to. We are among the lucky ones. Our sites just stick with a quick slather of IV prep wipe to cleanse the area. I think this summer we dont have a choice. We have to start using some type of super sticky solution before inserting a new site. Swimming has proven already to be a given lost site EVERY TIME. I'm a bit worried about all the sticky stuff we will have to try until we find the right one. Skin irritation. Another thing about Diabetes that I hate. When we return to the Endo in 3 months I want to hear how flawless Maddison's skin is where her sites go. I don't think that will happen. I don't want to see that visual reminder of Diabetes on Maddison's arms, hips and tiny tummy. 2 sites in 2 hours......add that to the list of Diabetes frustrations.

Friday, May 1, 2009

Friday Funny

This morning after just rolling out of bed Maddison asked me what insurance we have. "Why?" I asked......she said she had a dream about the GEICO money following her around. She told me if we don't have GEICO insurance we should "get it" because we will save alot of money on our "auto, home and life" insurance. How funny is that?