Butterfingers

My kids are all at the ages that they LOVE Halloween. I have to be honest, I'm not a huge fan. Okay, the theme of candy might be part of the reason, but I don't love dressing up, and I'm kinda a home-body, so going out and walking with the masses on a dark and cold night while trying to not loose one of my children isn't quite my idea of a good time. In fact, it's a little stressful.

But, I do love butterfingers (and Reese's chocolates) and the little packages make me feel like I'm not being too bad by eating a few. (I usually stop counting after three ;) And I want my kids to love the fun, especially while they are young and it is all so innocent. So this year I put on my happy face, along with a Snow White costume, and went along for the festivities.

This year my daughter almost broke my heart. After my kids went through all their candy, my 7 year old daughter came over to me and said, "Here Mommy, you can have my butterfingers, for when your blood sugar is low." Her willingness to share with me was sweet, but the fact that she knows what I need when my blood sugar is low blew me away. I know I've talked to her about diabetes and about low blood sugars, but I hadn't realized how much she's already processed and how much she truly understands this disease.

I wish my kids didn't have to worry about their mom. I wish my daughter could share as much candy with her mommy as she wanted and not have to think about blood sugar levels. I wish I didn't have to explain how to call 9-1-1 or why I can't share a juice box with my toddler. I wish I could keep this disease to myself and not worry about passing it on to my children in some form or another. But that's not the way family works, and it's not the way diabetes works. Like it or not, my kids, my husband, and all of my loved ones live with this disease too. They support me in so many ways, with their love, with their encouragement, and sometimes even with their butterfingers.

How do you measure a year?

It's world diabetes day and I've decided to try this whole blogging thing again... No promises but maybe once a week? Or every other week? Hopefully more than once a year.

Last year when I was testing my blood sugar one night before bed my husband asked me, "I wonder how many times you test your blood sugar in a year." Sooo, I decided to keep all of my test strips for one year, and well, you can see the results. I kept almost every test strip from November 1, 2010 until October 31, 2011. (I threw some away while on vacation and some of those suckers fell out of my little black meter bag, but for the most part I kept every one of my test strips.) Looking at all those little butterflies on all those little test strips, it hit me (again) how much living with diabetes affects us everyday. This is just one piece of the daily work it takes to manage this disease and gets me thinking... How many infusion sets for my pump, bottles of insulin, sensors do I go through in a year? How many times am I poked between blood sugar tests, inserting new infusions sights, sensors, and not to mention the blood draws for my A1C, cholesterol, etc...

I'm reminded of that song from the musical Rent "Seasons of Love"

In daylight, in sunsets, in midnights,
in cups of coffee, In inches, in miles
in laughter in strife,

In Five hundred twenty five thousand
six hundred minutes
How do you measure a year in the life


Somehow we manage to do it, squeeze in this very demanding disease into the busiest of days. I've been humming the "Seasons of Love" song to my own lyrics lately... "In test strips, in sensors, in cups of coffee, in lullabies and laughter, in hopes for a cure. In five hundred twenty five thousand six hundred minutes, How do you measure a year in the life?"

Lost

Lost.

That’s where I’ve been. Lost.

Somehow I lost my direction. Lost sight of where I was and where I was going.

I couldn’t remember where I fit in with all that has been going on and how to make it slow down enough so I can find my way again.

Hopefully writing, blogging will remind me.

I’ve missed it.

12 Years Ago...

Dear Diabetes,

I was nineteen when we discovered you. I thought I needed glasses because I woke up one day and could no longer see the whiteboard during class. That symptom was obvious, the others were easier to ignore. It didn’t occur to me that the thirst I had wasn’t normal. Gallons of water. A thirst I could never quench.

You tricked me. I had convinced myself I was gaining weight. I was eating EVERYTHING in sight, topping it off with dessert, and still I didn’t feel full. I was starving. Then you wouldn’t let me exercise anymore. I could hardly make it up the four flights of stairs without stopping to catch my breath. I had to give up running because I just didn’t have the energy. Even if I had a full-length mirror I don’t know that I would have seen myself turning into a skeleton. I had dropped 25 pounds with no exercise and eating more food than I ever had before in my life. That just couldn’t be possible.

But then Luke figured you out. After our long drive home from Santa Cruz he looked up all my symptoms in a medical book. The phone rang at 2 am, “Laura, go wake up your parents, I think you have diabetes.” My mom laid in bed with me until I fell asleep that night. I think she was scared to leave me. My sisters cried the next morning when they saw me. You had changed me. I looked sick, really sick.

I don’t remember any tears during the doctors’ appointments. There was the orange the nurse used to show me how to give an injection. I think I poked the orange once and then I had to do it to myself. It wasn’t a choice. You were here to stay. And overnight my life had changed.

At first you intrigued me. This new life full of injections and blood sugars. New gadgets, new rules, numbers, insulin, glucose tabs. Explaining it to everyone. I remember bits and pieces of the rest of that Thanksgiving weekend. Never would eating and celebrating be the same for me.

When I drove away from my parents’ house, back up north to college, I had a knot in my stomach. I hoped I could do it, but I wasn’t sure that I could. You came with a lot of rules. A lot of things to remember, and what if I forgot them? “Never be without your supplies. Be ready for a low blood sugar. Watch what you eat. Don’t forget to test, test, test. Be sure to tell the other students living with you. Don’t be a closet diabetic. You want people to know how to help you if they need to.” The fear started to set in. I felt alone. So scared and so alone. I wasn’t sure how I would do it on my own.

But I did. I had moments of panic. Crying in the shower, or alone in bed as I tried to fall asleep. Sobbing on the phone with my mom, unable to speak because of the choking sobs. The carefree life I had known as a nineteen year-old college student was gone. The fear of going blind, amputations, low blood sugars, kidney failure, and maybe even death was part of what you brought into my life. And I SO badly wanted to have a family one day. I couldn’t bare the thought of you taking that from me.

And so I worked hard at taking care of you. And it paid off. More than you could ever know, it’s paid off.

But you’ve made me work for it, and it never gets easy. Twelve years later, and you still surprise me, frustrate me, scare me, and so often overwhelm me. I wish you would decide to leave or just disappear for a day. I’d settle for just one day.

~Laura

November, D-blog Day, and some Halloween

November. It’s Diabetes Awareness Month, today is D-blog day, November 14th is World Diabetes Day, and this month also happens to be my diaversery (anniversary of my diagnosis).

The month started off bad... hours and hours of back and forth with insurance and the mail-in pharmacy about getting my insulin to me. (After crying to one person, I actually had to threaten that without insulin I would die, so they needed to figure something out.) SO frustrating! Anyway, insulin finally arrived before I ran out of it, fortunately.

It’s during those moments I hate this disease. Crying on the phone, hoping my kids don’t run into the room and see me in tears. Trying to keep it together while inside I feel so helpless, frustrated, scared, and just angry. This isn’t how I want to spend my day or my life, so I try not to let myself stay there for long. But from time to time it is how I feel.

My week with diabetes got better. Sunday Luke, the kids, and I went to the San Diego JDRF walk. We walked with the UCSD Diabetes and Pregnancy Program group which consisted of two other moms with diabetes and my amazing nurse who helped me through all three of my pregnancies. It is just a postitive, hopeful, and uplifting event. And pushing all three of my babies felt like sweet success.

Baby Fingers

I sometimes wonder how my diabetes affects my kids. They will only know a mom who has type 1 diabetes. They recognize the beeps and buzzing from my pump. It is often that all four of us are crowded into the bathroom during an insulin pump change. (It is hard to ask a 5, 3, and 1 year old to give me some privacy. Either they’re in there too, or pounding on the door to be let in.) They don’t even blink at the sight of a needle. “Does it hurt?” They often ask as I poke a new infusion site into my body. “Just for a minute,” I answer them truthfully.

They are wrapped up in this disease. They know it more intimately than anyone else because they are with me, watching me take care of not only their needs 24-7, but the needs of this disease.

The truth is, I probably take more blood sugar tests with a child on my hip than with out. At 11 months I watched in awe as Jake’s little bubbly finger went onto the end of my lancet device. He knew exactly how it worked before he was even a year old.

Bad Diabetic

I’ve been a “bad” diabetic lately. I know I’m not supposed to judge myself and all that, but honestly the other labels seem worse. Bad mom, irresponsible, or just plain stupid.

The other day the kids and I were getting ready to head to the library. I was planning on having a little snack before we left so I took some insulin for the snack. The problem was I got distracted before I could even make it over to the cabinet to get any food. I can’t remember if the kids started arguing or if Jake was crying and needed me, but something happened that distracted me for just long enough. I just continued to get the kids ready. Socks and shoes on, books all gathered and ready to return, I felt kind of organized! Then we loaded up and were on our way. As we were walking into the library I remembered. I had taken insulin, but completely forgot to eat.

My mom, sister, and nieces were all with us. I could feel the low creeping up on me, but told myself I’d just get into the library, let the kids get settled, and grab something from my purse. Bad diabetic moment #2: nothing to eat in my purse. Somehow I had forgotten to replenish my glucose tabs and lifesavers. I hate it when I do that! I just feel stupid. I wasn’t ready to gather everyone up and leave the library because I might get low. The kids were having such a nice time, and I hate letting diabetes and my stupidity ruin a good moment. Maybe the low blood sugar makes me extra irritated at myself and allows me to continue to make poor decisions. Who knows why, but I continued to sit there while the kids played knowing I had taken insulin, not eaten, and was going low.

We finally started to gather up the kids to head out. I was starting to feel sweaty now, and realized it was going to take us a while to get the books gathered up, checked out, and all of us out the door. Too long. Fortunately my mom was there. “Mom, can you see if there’s a vending machine or something?”

“You low?”

“Yup.”

The librarian informed her that they don’t have a vending machine, so she left in search of something. My sister and I checked out the books with the kids, and as we walked out the door my mom appeared with some orange juice.

I quickly felt better, but stupid. These are the moments I hate this disease. When not only does it come close to ruining a perfectly nice outing, but then I have to feel bad about my decisions. My life feels too busy with raising kids, keeping up with all the housework, trying to maintain friendships, help with school, family etc... to squeeze in the diabetes on top of it all. Ugh.

Sorry about the rant, I’m just over it.