Friday, July 27, 2012

I Can Walk the Walk (Not Just Talk the Talk)!

My father was diagnosed with Type 2 diabetes when he was around 40 years old. I am now 38 years old. My father has 7 siblings. I believe that at this point all but 2 of them either have Type 2 or are prediabetic. One of the 2 that does not is deceased so that's only one living without it. That is a lot of diabetes. Some of them are of a healthy weight. Some of them are not. I say this because it proves to me that it is not JUST about weight. I realize not eating the right foods and exercising contribute to it. But I recognize that with so many people genetically linked....something else is also going on there. My husband's grandfather was a Type 1 diabetic and died at a fairly early age of heart disease.

You'd think that would be enough of a wake up call for me to say that I should do what I can to prevent a type 2 diagnosis. Sadly, it never has. A few years ago, my mother also received the news that she was a diabetic. Instead of that being my wake up call, I just felt doomed. Damned if I did something about it...damned if I did nothing about it.

I have heard the word "diabetes" for as long as I can remember. My cousin who I grew up with is a Type 1 diabetic like Alex. She was diagnosed around the age of 6, about the time I was born. I don't remember thinking much about it though. We visited her all the time, even lived with her for a short time after my parents separated. I always remember the syringes in the kitchen drawer and the times my aunt tested her urine for blood glucose (no blood testing for it back then). But she received like 2 shots a day and we weren't really present for them. I just remember her mom always feeding her and making her stop and have snacks because that's how she prevented the lows. I remember another cousin and I always sneaking upstairs in the morning while everyone was asleep to eat frosting out of cake mate tubes which were always in abundance in the kitchen. I always wondered why my aunt never had cookies though. I am guessing the cake mate wasn't for cookies now that I am a mom of a diabetic. I know what those cake mate tubes are for.

You'd think with all that diabetes I'd know something about it. You'd think I would have seen the symptoms in my own child. But at the same time, I have lived in the west now for over 15 years. My family lives on the east coast. I don't visually see their diabetes. We don't discuss it at length. Heck, I hope no one is mad at me if I am "outing" them. I just know everyone seems to have it but when I see them at reunions, I don't see that they have an illness. I don't know what it means. At least I didn't know. At most, some of them have tried to gently talk to me about my own weight and health. I've always nodded and heard them...but never listened.

I have had a few blips in the past several years where I've tried to do something about my food choices. I've always failed miserably. And now I am going to be brutally honest and share something I've never shared with anyone...I've had an A1C come back slightly above 6. I've been told it was considered prediabetic. This was a few years ago. I busted butt and lost about 25 pounds and my A1C dropped back down. But that was a few years ago. I haven't had my blood tested in a long while. I know I need to.

Now let's fast forward to the story everyone knows...December 20, 2011. Would my daughter getting Type 1 (which I KNOW HAS NOTHING TO DO WITH TYPE 2 DIABETES OR WHAT SHE EATS) be my wake up call? How can I teach my daughter to eat better and exercise so that her life can be healthy despite a Type 1 diagnosis if I CANNOT DO THOSE THINGS???

But at the same time learning what Type 1 is and learning to basically be the pancreas for my child...it takes everything out of me. The shots....the blood tests...the cell phone alarm that buzzes at 3 AM and then sometimes makes it such that I can't go back to sleep...the stress...the worry...the bills...the husband that works crazy hours to pay the bills leaving me to be a single parent...the other child with ADD who would forget his head if it wasn't attached...my own ADD which has to be managed in order to manage the other ADD child and now the diabetic child...it's A LOT. I spent many months depressed and just trying to make it through each day. It hasn't been easy. It just hasn't. Some days I just want to curl up on the sofa and grab a pint of ice cream and escape my world. But now I have to hide it when I eat that ice cream...because I don't want my daughter to see it.

Then I got this email from the American Diabetes Association. They were doing a walk in October - Step Out to Stop Diabetes. It's not like a marathon or anything. You can choose to walk the 1K or the 5K. And, I started to think about it...because I also received information about the JDRF walk which follows closely to the ADA walk. I just can't do both so close together. I made a decision this year that we would do the Step Out walk. We would commit to supporting JDRF in other ways throughout the spring. We may do the JDRF walk another year. Maybe we'll alternate. I don't know. Not a bridge I need to cross right now. But I thought about my mom and my dad. I thought about my aunts and my uncles. I thought about Alex. And I thought about myself. And I decided, we needed to do this walk.

And, if we were doing this walk, how could I personally DO THIS WALK if I was living a life that was setting myself up for diabetes? My daughter will never have the opportunity to  exercise and eat different foods and make her diabetes go away or get better. I HAVE THAT opportunity. And I'm throwing it away while I try to tell her how to eat and how to exercise. Can you say HYPOCRITE???

So about 2 weeks ago, I decided I was DONE being a hypocrite. If anything I have always tried to be an honest person who did the right thing. This is the right thing. I started reading books about eating healthy. I threw out all our white flour, white bread, white sugar things. I've been choosing to eat and prepare things for the family that are on the low glycemic index and made from whole foods/grains. I gave up caffeine and cut back on caffeine free soda to 2 per day (and hope to kick it altogether soon). I've been swimming and using the Wii Fit again (curse the Wii trainer who told me it had been 914 days since my last visit and it didn't know if it remembered my name).

I've lost 7 pounds. I haven't been starving. I FEEL better. I feel less depressed. I feel less angry. I feel more calm. I know my ability to focus on this given my ADD which does butt its ugly head in alot is due in part to Alex being on the pump. The insulin pump has freed alot of my focus and energy from those damn shots I hated giving. Yes, we still have alot to do with Alex but something about those shots weighed us all down more than anything else.

Alex started doing Wii Fit the other day. She has been watching me. Just like I know she was watching me eat ice cream I tried to hide on the couch. I can do this for her. I can do this for me.

And we can walk for Alex at Step Out. And we can walk for all my other family that has this disease and for all those I don't know who have to live with this. Maybe it isn't much...but it's something. And I can meet this goal.

Can you help us? Consider donating to our team. We are so blessed and thankful of our friends and family who have supported us! It has been encouraging and heartwarming in so many ways.

Monday, July 16, 2012

Jumping in Head First

We made the decision to participate in the ADA Step Out Walk to Stop Diabetes event on October 6, 2012. It's our first time participating in a fundraising event but it feels right to pick this one!


Visit http://main.diabetes.org/goto/wewalkforalex to help us in our efforts!

Thank you!

Friday, July 13, 2012

A Not So Minor Detail

I think I've mentioned that I LOVE Alex's insulin pump! It's been a few weeks of joy. I did a lot of research on the dangers, the safety measures, the basal settings, etc. What I didn't research...how to wear the darn thing! So poor Alex left her pump class with the thing clipped to her skirt - at least Animas provided a little metal clip!

Truthfully, she loved the clip - she has been so excited she has wanted to show her pump off to everyone and anyone. She proudly wears it visible a lot of the time.

We came home from the class and I realized I should probably look into some belts or accessories to wear the pump in addition to the clip. A few friends had already given me advice to purchase some items...not that I did...

When I looked up accessories, I was aghast at the prices. Average price for a cute belt in a cool tween print? $40!!! My domestic skills kicked in and I figured I could sew something for her cheaper than that! I grabbed out the sewing machine and went to work. Now, I'm NOT a skilled sewer. I like to think I am. But I'm not. I can hem pants (you really need to be able to do that when you are only 5 feet tall). I can sew curtains. I can sew American Girl doll skirts and dresses that make Alex smile (and don't cost $35 a pop at the "AG Store"). I figured how hard can a stretchy piece of fabric shaped like a tube be??? So, I sewed a belt. It wasn't horrible.

Mom's Homemade Belt
 But I think I need to make some serious improvements. It didn't seem to matter. She wanted to wear the clip anyway. The belt sat on her dresser.

Fast forward to last week. Alex mentioned the clip was "loose". I looked at it and agreed. I tried to tighten the screw. It didn't help. Within 2 days, it broke altogether.

It looks like it should go back together...but it doesn't.
Out came the homemade belt. That worked for a few days and got us through our California trip. But by the end of the trip, the belt wasn't holding as snugly on her waist. I think I need to examine my material choices and closures.

Now we were stuck with no clip and no belt. Poor Alex has been wearing the thing inside her underwear for 2 days. It doesn't stay in well. She doesn't have pockets on her clothes. Finally today she couldn't even manage to get it to stay in her underwear. It's now in a sock safety pinned to her top. She is NOT happy. A pinned pump inside a big sock is NOT cool! FYI...

"You're not putting this on Facebook, are you mom?" Nope....not Facebook...
Luckily, I realized yesterday this was an urgent problem. I called Animas about the broken clip. They agreed to overnight a clip to me which will arrive today. Yay for good customer service! Poor Alex can get rid of her safety pinned sock in a few hours. I also decided $40 wasn't so bad for a nice fitting belt. I made a purchase of two belts from a neat looking company online also recommended by a few friends. I'm sure Alex will agree they are WAY cooler than Mom's sock or falling apart belt.

Just to torment her though...I'm going to keep working on some better homemade belts. Because I'm mom...I'm supposed to do that.

Thursday, July 12, 2012

When you're high you're low and when you're low, you're high...huh?

So I've noticed what I guess would be a "trend". It appears that when Alex is extremely happy, she is more susceptible to being low. When Alex is extremely unhappy, she is more susceptible to being high. Case in point...

Happy and low...
The happiest I've seen Alex since diabetes came into the picture would be from her Camp AZDA adventure a few weeks ago.
She is still talking about camp and anticipating next year's trip. While at camp, she had many lows, including a scary little 28 during a movie night. I'm secretly glad she didn't throw that number up at home. I probably would have been in complete panic mode.

The second happiest I've seen Alex would be this past weekend at the American Girl Place in California.

That trip went WAY better than the Idaho trip though and I give alot of credit to little miss Animas Ping. Life just isn't all about needles anymore and it's been so so awesome. But back to the topic...on the way to California, Alex was in the backseat and said she felt low. She tested and sure enough was 59. She came up though with a little sugar and life moved on. Then, the morning of the big visit to the store she woke up at 74. This NEVER happens. Again, not a scary low so we moved on with some breakfast. But that same day produced the scariest low I've seen to date. After about 6 hours in the store, it was time to go. We were both drained. Her numbers had been fairly normal all day with exception to that wake up number. We got in the car and hit the LA freeways at rush hour. I was by myself and trying to navigate the crazy drivers, the many freeways, and a strange new route to a new hotel for the night. Alex fell asleep. Something didn't sit well with me. After a little bit I called her name and she half wake up. She said she didn't feel good and I told her to test. She was 49. She was shaking. I was stuck in the passing lane of like a 5 lane freeway full of angry aggressive drives and no where to go. I told her to start chewing some gummy candies in her pouch. She asked how many and I said it didn't matter. Just get them in her mouth. She was in the 70s about 15 minutes later in above 80 when we pulled over finally. She shook and looked rather pale and sick for about 45 minutes while I tried to hurry and check us into the hotel room. She came up and all was well.

Stressed and high...
Contrast those lows to the many times Alex is running high...I admit as sweet as Alex can be...she can also be highly stressed out and anxious. She was diagnosed with anxiety disorder a few years ago after many crazy panic freak out sessions involving public toilets and some advice from a school teacher. She just has a hard time with anything new or not routine. We have attempted some modified behavior therapy with her (through counseling) and opted not to medicate. I'm not opposed to medication. I'm opposed to it being the first resort. Most of the time we can reason with her. Most of the time she is as normal as any other kid. We prefer to downplay her anxieties and reason with her. It usually works with alot of patience. Anyway, so much stresses my sweet girl out. And diabetes is stressful even if you don't have an anxiety disorder. I really ask God quite a bit as to why give an anxious child an anxiety producing illness? Really? So she tends to run high quite a bit at home and out in public when she is not totally absorbed in something she considers highly exciting.

If only we could go to the American Girl store everyday...

Thursday, July 5, 2012

A Week of High Notes...Not High BGLs

I clearly remember when insulin pumping was first brought up to us. We were just out of the hospital and beginning to reach out to people in person and over the Internet. People urged us to look into pumping as soon as possible. I kind of tuned them out. I was so incredibly overwhelmed with the sheer acceptance and day to day management of the disease as it is taught at the hospital. I had no more energy left to even think about options. Just get us through the day! Sometimes it has been just get us through the hour.


Even as our confidence grew and we realized Alex was one of the few at events we attended not on a pump, I just couldn't bear to think about it.


I'm not sure when that changed or why. But somewhere around April, I started doing some research online and attending a few local events where local vendors were present to view pumps in person. Alex had a friend at school newly diagnosed in January who was getting a pump around that same time. She suddenly started asking me when she was getting a pump.


By mid-May, I was ready to initiate the process and with the approval of our endocrinologist, we moved forward with required pre-pumping classes and so forth. I had no idea how we would pay our portion of it, but we were going to make it happen.


Through all of it, I have read so many sites and stories of problems and complications that can happen. I've also talked to countless people warning me that starting on the pump can be extremely frustrating with numbers all over the place.


Today, in fact about exactly now as I blog, Alex has been pumping for 1 week. It has been the best week of our diabetes timeline. I don't think I realized just how much stress that syringe and vial gave us each time a meal or snack crept up on us. And there are quite a few meals and snacks each day! And no matter how much we tried, we would seem to have trouble with Lantus. Alex screamed that it burned. Some of it leaked out. We were constantly changing the amount because she has had some wicked highs. her A1C went up in the last 2 months. No matter what we've done it feels like we haven't been able to have more than maybe one target number a day. I was getting up twice a night to correct her from some crazy highs.


1 week into the pump and I'm seeing more and more numbers around target. Her night numbers are not soaring up to 300. We've changed her set 3 times since the insulin start. I totally expect and know there will be infusion set problems. But I thank my lucky stars she has not yet had set problems - it has bolstered our confidence so much! We needed that! I needed that! The site changes are not difficult or tedious. Alex is much more relaxed about getting them as opposed to the shots. It's so nice to hit a few numbers on a screen and deliver her insulin.


We did basal testing a few nights ago to study her nighttime highs and change some basal settings to help that. We've made a few changes and seen better numbers. Today we made a few more changes and I hope it keeps us moving in the right direction.


I wasn't sure how this was going to be, but so far, I'm super happy with insulin pumping. Alex is ecstatic. She doesn't even want to put the pump inside her clothing. She wears it proudly clipped outside her skirts or on her shirt. It's been an awesome week. I'll take it...one week at a time...

Sunday, July 1, 2012

Another shot of whiskey please...

Oh Animas Ping Pump & Meter...

I'm really loving your insulin pump for my daughter. We've only had it on for a few days and I can already tell it's making a huge difference in our lives.

What I don't love however is this whole food list item which you so emphasized when you sold us on the wireless meter that comes with the pump. Who created this application? Have they ever actually had to use it? Because between it and the software for my laptop, I'm ready to have a few shots of whiskey or something...and I don't drink.
  • I can plug in the meter with the provided cable. Yet, once I upload food to the database, I'm DONE! I mean DONE! I have to completely exit the program and re-enter the program if I even want to THINK about uploading the file again. Why won't it detect the meter and KEEP detecting the meter without making me exit and restart the program?
  • You provide these great categories for food items and I CANNOT delete or edit or add food items to it except in one category...favorites. That stinks. Your default food list doesn't help me. My daughter doesn't eat baby food. Why can't I delete it? Why can't I create new categories, like restaurants which is where I really see this food list as helpful??? Yes, I can go in and add items from the master Food DB you provide, but this isn't always the way I want it to be. I am so frustrated that I can't create or edit or delete categories. If I hand this meter to a babysitter and explain the food list, they won't be able to go to Soups & Sauce and find my spaghetti sauce if I enter it...only favorited items. The only thing that makes sense to me at this point in a twisted sort of way is to delete ALL food items and just have everything reside in Favorites. Too bad I will have a ton of empty categories...
  • Adding custom food items...why can't I add custom food items to ANY category??? Why can I only add my own items to FAVORITES? Again, now I have a ton of empty food categories that leave a babysitter for example scratching their head if they were to search for say Alex's favorite cookies under snacks but can't find them there...yes it is her favorite cookie...BUT...they have to scroll for like a ZILLION years to the cookie in question because of so many items having to be in favorites.
  • Character length...I have to learn a different shorthand lingo for some items to get them to fit under the maximum length for the food item name, especially for restaurant items where I have to come up with a shorthand restaurant name and then shorthand food item name. Indeed, the babysitter will think I drank whiskey when creating this food list.
  • If this program asks me if I'm sure I want to open a food list file one more time, I'm going to scream. I don't know why it needs to warn me that I'll lose the empty food file when I open a real food file from my files. Really? Thanks!
  • Do I really need to enter the protein and fat content of each food item I create? I can see where this might be useful...don't get me wrong. But what if I only wanted to track carbs and fiber? That's all the is required for insulin dosing. Since I only have a written file of Alex's favorite foods by carbs and fiber, I am now spending tons of time researching protein and fats in each item just to be able to enter it. Couldn't that be optional?
  • Why can't I edit custom food items I create? I only can delete them and create them ALL OVER AGAIN. For example, I started creating a list for Chick-Fil-A. I realized I couldn't start each item with ChickFilA because of that max character thing. I then wanted to edit the food name and I couldn't. I had to delete all of them and recreate them as new items with new names. And then go search for their nutrition counts...again. Ugh!
Okay that's enough venting about the food list for now...truly I love your pump so far and I supposed it is the most important item. The food list was an added convenience. But since that seems to be one of the first things someone shows me when we discuss selecting a pump at a diabetes event, I was deflated when trying to use this program successfully. I've spent most of my weekend trying to arrange it to make it useful. I'm not even close to calling it done. If I don't take breaks from this program, I go batty...as you can tell from this post.

P.S. At 3 AM...I wish that meter light would come on more quickly. You have to hold down the OK button for what seems like a long time to get that thing to light up. My previous meter which I loved came on in a second and the strip itself could be lit up...very nice at 3 AM when I am completely out of it and exhausted...

P.P.S. Sure would be nice to be able to make this a web-based application I can use from my iPad or iPhone...