Diabetes is Always with You

I'm always watching my life and looking for new ways to say important things. Some stuff defies description. Often these are the very things that are most important to convey. So when an example comes up that I believe can take a thought to a new level for those looking in from the outside, it's my inclination to share it with you.

I feel like I've struggled in the past to make the point that diabetes is a 24/7 responsibility. I've said, "Christmas morning, 2 AM, on your birthday... it's always there" but do those phrases really tell the story? I never thought that they did, at least not completely enough for my liking. The other day something happened to me that I think conveys just how omnipresent type I diabetes is in a life.

I should begin by saying that my mother is safe and healthy.

Kelly took the day off so that we could do some Christmas shopping, our time was limited and we had a number of stops to make. Cole developed a cold the evening before so he was home from school and in bed. Kelly and I made the thirty minute drive to the mall as soon as Arden's bus pulled away and had successfully completed a few purchases when Cole called me. When my phone rang I had an arm full of gifts and Kelly had just disappeared to the opposite side of the store. I could barely keep the phone at my ear while holding the items as Cole and I began to speak.

I could hear how tired Cole was, his voice was labored and he was unfocused. He began mumbling and lethargically managed to say that someone had left a message on our machine about my mother. He said that it sounded important so he got out of bed to listen to it. My mom is 70, active and gets around with the assistance of a transportation company. She commutes to the grocery store, shopping, to the gym and everywhere else that she needs to travel with their service.

"The lady said that they came to pick up Grandmom but she wasn't there", that's how Cole began his story. "She wasn't there?", I asked Cole. I went over the call a few more times with him, "The driver came to pick Grandmom up and she wasn't there, correct?". He responded, "yes.. that's definitely what she said".

We don't live in the same state as my mother, we aren't too far away but still not in the same state or terribly close. There I was too far away to help and becoming worried that my mom needed assistance.

So I called 911.

I explained the situation to the operator and then hung up the phone to call one of my lifelong friends who happens to be a police sergeant one town over from where my mom lives. He was working and was able to make sure that an ambulance and police officer were in route to my mother's home. Then I called my brother, he was out of town too. No one could get to my mother so I was left waiting and hoping that the police would be there quickly. The situation was rapidly becoming extremely tense, I could feel my pulse quicken and I began to imagine my mother alone and possibly in trouble.

I needed information. I called the transportation company, no answer. There was nothing I could do, I was now standing in the middle of the holiday infused mall, holding my phone and looking like a lost puppy. Then my brother called me, "the police are in mom's house... she isn't there. Her pocketbook is on the sofa and there is a half finished glass of juice on the kitchen table, but she's not there". A few minutes later, unable to wait any longer, I called the house and spoke with the police officer myself. By now he found my mother's neighbor and friend, she indicated that my mother went to the gym. So I called the gym...

The man at the gym said that my mom is in there everyday, he knows her and her routine, they speak constantly. He was sure that she never came in that morning. Everything was crazy and getting worse by the second. My mom was missing, she never arrived at her destination, I had by now spoken to the transportation company who assured me that my mom was dropped off at the gym. My head was spinning trying to imagine what could have become of my mother in the twenty steps it would take to carry her from the car to the gym. Did she get ill, was she injured, mugged - is she dead?

"We didn't have Thanksgiving together this year", I thought. "She sent me an email yesterday that I haven't answered yet", that notion made me forget that I was worried just long enough to be sad. Then I remembered that my mom hasn't read the acknowledgement I wrote to her in my book. Suddenly the worried thoughts were coming faster then I could process them. "My kids are going to miss her", "what am I going to say at her funeral?", I was slipping into a panic. A few moments later the police officer called me back to ask more questions. I was on the phone, standing in a crowded mall, imagining the worst while trying desperately to hold together and answer the officer's questions - questions that seemed more important then any other I had ever answered before.

I snuck a look at my call waiting when it sounded. It was Arden, it was lunch time. "Officer, I have to take this call... I, my daughter, type I, hold on please".

Arden said hello, told me her BG was 136 before lunch and asked if she should bolus for the entire 49 carbs. I centered myself, thought about her morning BG, breakfast, where her CGM was at the two hour mark. I remembered what we did with the basal prior to recess, thought about the food in her bag and said, "yes, 49 carbs... how much insulin is that?". I didn't think once about my mother or the officer as I waited for Arden to respond, there was nothing I cared about in that moment more then finding out how much insulin her PDM was recommending. Then I flipped back over and finished speaking with the officer.

When someone tells you that diabetes doesn't stop, that it is unrelenting, unyielding and unrepentant. Believe them with the full power and meaning of those words. I could have been hanging upside down in a burning car and I would have taken that phone call and calmly talked with Arden about her lunch bolus. Diabetes won't leave you alone because you are busy, no matter how busy you are. It didn't care that day if my mother was lost, in danger or worse and it won't care if it's 2 AM, Christmas Morning or your birthday. The people that live with type I know the weight of those words, and my reaction to this moment is the new best way that I can convey that feeling.

I hope this brings the idea of what diabetes requires from a person to a new level of understanding.

As for my mother, the entire situation was one confusion. You won't believe this. One driver picked her up in the morning at her house, the second (different) driver couldn't locate her when he arrived to pick her up at the gym (I thought Cole meant she was at home for the initial pick up). Turns out that the first (newly hired) driver took my mother to the wrong gym, same gym franchise, different location. My mother didn't notice (she was reading in the car) until the car had pulled away. She decided that since she was there, she'd workout and then wait for the driver to retrieve her as always... except the second driver went to the correct gym, where obviously, my mother never was. But that's not the story, it's just the vehicle that I brought it to you in.

Feel World Diabetes Day 2012

I've spent some time recently thinking about what World Diabetes Day meant to me, what did I want from it, what did I hope it's existence would leave for those that witnessed or participated. On Monday night I found the answer to my question...

Arden brushed her teeth before bed, she put on a silly pair of pajamas and climbed under the sheets. Her voice called to me and said that she was ready to be tucked in. When I entered her bedroom she had the lights out, her face was illuminated softly by a stream of dimmed light from the hallway. Her eyes were closed, she was pretending to be sleeping so that she could try and scare me as I approached. I stopped halfway into her room to tease her, she was trying so hard not to move, carefully holding her lips together so that she wouldn't smile. I looked at her face for a long moment before I sat next to her so that she could scare me. She popped up, I acted frightened, and then we laughed. We talked about the next morning and she expressed how happy she was that I was able to schedule a play date for later in the week with one of her friends. It was a wonderful few moments, some of the best that I had that day. 

Our party was crashed seconds later by the electronic beeps of Arden's CGM. Three beeps to be exact. It's urgent bells told me that her blood glucose was falling, I looked at the clock but I knew that it was doing so far sooner then I planned. Those beeps brought me right back to reality. We tested and continued to mess around, Arden's spirit was unchanged. I decided that Arden needed a juice box, she didn't want it, actually Arden hasn't enjoyed a juice box in some years because they feel like medicine after all this time. I could tell by the slight change in her face that she didn't want to drink the juice but she didn't make a fuss. I smiled and continued to talk about the next day as she forced herself to drink. It occurs to me now that we were both putting on a brave face for the other.

I hope that World Diabetes Day allows one new person to see my blog today, anyone's diabetes blog really. I'd very much like it if as many people as possible could understand more about type I diabetes. I'm not talking about the tried and true stuff. No talk of how many shots or pokes, those things suck but you can't fully appreciate them if they aren't your reality. But feelings, we all understand feelings.

This may seem on the surface to be a minor thing, a petty inconvenience but please trust me when I say that it's very much more. I sat on the left side of Arden's bed as she forced down a juice box that she didn't want. She did it so that she could go to sleep without worrying that her BG would fall to a dangerous level, she did it because she had to, did it because that's what she does. She tried to keep the happy in her face, tried to hold on to the joy that we made together only moments before. She did a good job, I may be one of the only people in the world that could have seen through her mask. 

Watching my daughter with that juice reminded me that there are forces in each moment of her day that manipulate her life. These moments aren't scripted, we don't know when they will happen, how they will end or if we are responding to them correctly. They demand that we stop living and pay attention to them so that we may continue to live. It probably only took her three minutes to consume the juice, but those minutes and all of the ones like them, they steal from us and they take more then time. My hope for WDD is that someone takes the time to understand a little better that which is the life of a person with diabetes, and that they feel as best they can what it means to carry type I through each day. I think that understanding will make an advocate out of even the most casual observer, and that understanding will lead all of us to a brighter tomorrow.

Arden hates drinking juice, I loath having to ask her to do it. Each time acts as a mallet that strikes at my soul. I can't be sure of what it does to Arden, I probably couldn't handle knowing. Please don't think of this as a story about a juice box, it's a story of a chronic disease and it's effects on an innocent person. I began this post with the intention of describing the sadness that watching diabetes do what it does has on me, but I can't find the words. I guess I'll simply say that it hurts, physically hurts me. It changes me. Some days and in some ways for the better, sometimes for the worse, but I am inarguably changed. 

November 14th is World Diabetes Day, November is Diabetes Awareness Month, people that live with diabetes do so bravely each and every second of their lives. Please try and feel what that means, let it change you.

JDRF T1D4ADAY

On Thursday, August 16, 2007 I posted for the first time on Arden's Day in a post titled, "Decided to Share". At the time I wasn't trying to 'launch a blog', I didn't really know what a blog was. Here's proof that I didn't know what I was doing, the image from the first post, the one shown above, it was named "1.jpg" - I was more then a novice. All I wanted was a way to explain what a day in Arden's life was like to the people in my immediate circle of family and friends. So I decided to post something each and every time that diabetes entered our day for one day. 

I was so moved by what I was about to do that I, uninvited, emailed (Geez, I'm embarrassed to say this)... emailed everyone in my address book at each diabetes moment. I think that I did that for the first few of the morning and then invited people to follow along for the remainder of the day at a link. I did send a note first, though that doesn't make it much better, announcing my plan. Looking back, people must have thought that I was nuts, and mabe I was. It was a few days before Arden's first diaversary and I was probably extra emotional because I had some lofty and unrealistic expectations about what I imagined the first anniversary would bring. I expected clarity to arrive on that day, strangely I thought the keys to diabetes knowledge were about to be dropped at my door. Anyway, I just put it out there in a big bad way and people responded, and many told me how impactful the experiance was. After that I just kept going...

The JDRF has just announced a program called 'T14ADAY', that invites people to sign up for text messages that will arrive over a twenty-four hour period with the intention of showing someone the extent to which type I is involved in our days. I really think that this is a great idea! Here's more info directly from the JDRF:

Throughout November, we're asking people to better appreciate what people with type 1 diabetes (T1D) experience every day, every hour by taking part in a unique mobile-based challenge: T1D for a Day.

When you sign up for the T1D for a Day text challenge, you agree to receive as many as 24 text messages over a 24-hour period that simulate the constant blood sugar testing, insulin injections, and dietary decisions that confront people with T1D.

While no virtual campaign can recreate the many needles required or the physical and financial tolls of this serious disease, T1D for a Day seeks to deepen understanding of the many heroic steps our friends and loved ones with T1D take each day.

Please sign up for the T1D for a Day challenge now!

There is more information at the this link including how to get started online or with your cell phone. I'm spotlighting this effort from the JDRF becasue I know first-hand how much of an impact what I did all those years ago had on the people in my family and our friends. This is a great oppurtunity for the people in your life, the ones that may be struggling to understand type I, to get a closer look at why you look so tired. 

You can find all of my DayOne posts from 2007 here or by clicking on the DayOne tag.

Seven. Point. Five.

 

I've never said the actual number here before. I've never had the nerve to say Arden's A1c is 8.5 and no matter what I do I can't seem to get it to go lower. Back in February when Arden's A1c was at it's lowest point ever, I still couldn't tell you that it was 7.8. We had a .7 reduction in February, the biggest single leap ever, a sign that we had cracked the code and still... I couldn't say the number out loud. As proud as I was of the 7.8, I couldn't bear the thought of you adding .7 to it and realizing that her A1c was 8.5 just three moths prior.

A1c is funny. Everyone tells you not to measure yourself against the number, yet it's the only number that we measure to examine the job we are doing managing type I. I understand why I shouldn't measure myself, but if not with this, how? How do I know if we are doing okay, better, worse?

I tried, just as I always do, to not think about what Arden's A1c was going to be as we walked into her Endo appointment yesterday. I was doing a good job too because I was so focused on the fact that Arden was filling out the pre-visit form on her own for the first time. It made me think back to the first time we brought her to this office, she was two years old and this whole thing seemed like a bad dream. In those days the A1c results made me nauseas. One time, back when the tests took much longer, our NP caught me in the lobby as we were leaving to say that Arden's A1c dropped .2 to 8.7. I cried right there in the lobby when I heard the news and the NP hugged me because I was so inconsolable, so happy, eminently relieved. 

I cried because each point felt like more life, like better days. Forget the notion that we are doing something right or not, I just want Arden to live as long and as healthy a life as possible. Ironically, I want the same thing for all of the people that I love and I'm probably making far worse life choices for myself and others then I do for Arden. Diabetes is the catalyst that makes me pay attention to this degree, it is a curse and a blessing in many ways, this is one of them. Now it's six years later, Arden isn't two, and I'm not new to this diabetes thing. "It does get better", I thought as I watched her write her name on the form. Maybe not easier, but better.

You'll get better, I got better, good things are coming.

So yesterday when the NP told me that Arden's A1c was 7.5. I just smiled and said, "great". Sure my eyes tried to fill up a time or two as she praised Arden for her hard work. I was so proud of Arden that I didn't have time to make the connection between the number and Arden's health. I never thought of it like it meant more days, no arbitrary feelings that we did something monumental or did something that meant the literal difference between having a tomorrow and not. It just felt like an accomplishment, no different then if I had completed an exercise goal or written a blog post. I set out to do something and got a good result. Simple. If next time doesn't go our way, then we try again much like hitting a baseball. Just because you don't always get the result you desire doesn't mean that your approach is wrong, only that you are doing something that has so many variables that it is not reasonably within your control. Your job is to win the ones that you can and not let the others slow you down. 

I think I'm finally past the part where I think of diabetes so fu@&ing literally ever second. Yesterday, I felt happy, not relived, not like I just pulled Arden from the jaws of certain death, just happy. I think one day, if you already don't, you'll feel the exact same way because it gets better.

It was a long road from 9s to 7.5 and we aren't finished yet. The NP asked me what my short-term A1c goal was and I said with some confidence that I think I can get it to 7.1. I've identified two times of day with CGM graphs where I think we can do a better job of pre-bolusing and making better food choices. Those changes should move the number toward 7.1. I'm going to start by trying to effect those moments and see where we are in three months. I'll strike out once and a while, but I bet that by the time another three months goes by, I'll have more hits then outs. This is how, in my opinion, you should measure yourself. Simply by being able to say that you are trying with every ounce of who you are. By understanding that you aren't trying to win and that it's not possible for you to lose. As long as you don't give up, you're doing perfect!

I want to take a moment to list a few of the factors that I believe have the biggest influence on Arden's A1c results. When the NP asked me what my secret was I flippantly said, "Apidra, DexCom and not sleeping", but there is more to it then that. 

Support - Love and support from family, friends and teachers is huge.

Insulin Pump - Being able to give insulin quickly and unobtrusively for meals, snacks and high BGs.

CGM - Arden's DexCom is a window to the past, present and future of her BGs and I couldn't make the pinpoint adjustments that helped us get to this new level without it. It's sad to me each day that the FDA doesn't approve it's use for young people.

Over night monitoring - Arden is sleeping almost half of each day, if you can control the night then a few bumps during the day don't hit the A1c average so hard.

Apidra - Arden's BGs are move stable on Apidra then they ever were with the other insulin she was using in the past. Make sure you are using the insulin that works best for you... not just the one some sales person gave your doc.

D.O.C. - You all give me strength to do these things when I otherwise feel like I can't. It's knowing that one of you is awake, sad, crying, happy or running around out of your mind like me that makes me realize that I'm doing okay. 

As we walked through the lobby yesterday on the way to our car we saw a teenage girl filling out the same form that Arden had just written her name on one hour before. This girl was just on the verge of being a woman and that almost made me cry... but it didn't have anything to do with type I diabetes. It does go so fast, just like they say.

Arden's A1c is Seven. Point. Five!

"Diabetes", a poem by Arden

Arden's Poem, "Diabetes" I found this poem in Arden's writer's notebook at the end of the school year and I wanted to share it with all of you. I asked Arden and she gave me permission to post it. I believe that these are the first words on Arden's Day to come directly from Arden.

So without further ado and transcribed exactly as she wrote it... I present, "Diabetes" a poem by Arden, age seven.

Diabetes

Why did you pick me?

Why's diabetes diabetes?

How did diabetes get here?

Why is diabetes called diabetes?

Why is there type one diabetes

and type 2 diabetes.

How did diabetes get in life?

Why are you here?

I'm not scared of you evean

that something could

haping!

Update on Tuesday, July 3, 2012 at 11:23AM by Scott Benner

 

Arden's poem was choosen by @BestBetesBlogs as 'Best Diabetes Art' for June 2012. Thank you to the person or people that nominated Arden's poem. You guys rock!!!