Diabetes Blog Week, Day 2

Diabetes Blog Week, Day 2, "One Great Thing"

 Today's Topic:

Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”.  But today it’s time to give ourselves some much deserved credit.  Tell us about just one diabetes thing you (or your loved one) does spectacularly!  Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes.  Nothing is too big or too small to celebrate doing well! 

I am going to make myself uncomfortable and do two things that I abhor. The first and admittedly easier part, I'm going to write to the prompt. Second and much more difficult, I'm going to unapologetically say nice stuff about myself.

• I think I do a good job of sharing what it's like to be a parent of a child with type I diabetes. I see being this transparent as a public service and it makes me proud that Arden's Day helps people.
   
• I can basal away a high or low BG in a way that makes me feel like dropping confetti on my own head.
   
• Arden's A1c is in range.
   
• It still remains to be seen but I truly believe that the greatest thing that I will ever do (as it relates to diabetes and excluding caring for Arden) is to imagine 'Arden's Day Gives'

Thanks to @alsophil for our logo!

The interactions that I've had on this blog led me to believe that while there are many obstacles that we all face while living with type I diabetes, one of them bothered me more then the rest. I was startled by the number of voices that I heard online that want devices to help them manage their type I but can not, even though a great many of them are insured, afford to use them. After much soul searching and some timely input from others I came to the conclusion that I could be the one to effect this issue and we set about forming a non profit to do just that. 

On April 17, 2012 'Arden's Day Gives" was granted it's incorporation status from the state of New Jersey and we are currently in the process of applying for charitable status from the federal government. The process is a long and complicated one but we are making our way through it quite nicely. 

I hope Arden's Day Gives can serve as an example to you that your thoughts are only one physical action away from being tangible. I took a word on a digital page and turned it into an entity for good. Though ADG is still just a FaceBook page that's under construction, a twitter account and a URL that doesn't point anywhere yet, it is closer to helping the children in our community that need it most then it may appear. 

So far what I've done amounts to not much more then a raised seal on some paperwork but that's just the part that you can touch. In the feeling world, in the place where hope lives, it's already "great"!

I hope that you can follow Arden's Day Gives at one or all of the ways that I provided above. Very soon we will launch a website at www.ardensdaygives.org, be announcing our board members and with some luck be in possession of a 501(c)3 distinction by the end of the year. After that we will seek support from where ever we can find it and then go about doing the work of getting insulin pumps and continuous glucose monitors to the children that want and need them.

http://twitter.com/ArdensDayGives

http://www.facebook.com/ArdensDayGives

Diabetes Blog Week 2012

It's that time of year again... Diabetes Blog Week is upon us. Each day of blog week diabetes bloggers all around the world sit down and write from a prompt found at 'Bitter Sweet'.

Diabetes Blog Week, Day 2, "Find a Friend"

Today's topic is:

It seems the most popular thing about Diabetes Blog Week is that it helps us find blogs we weren’t reading yet and connect with some new blog friends.  With that in mind, let’s kick off Diabetes Blog Week by making some new connections.  Think about the d-blogs you read that you think we may not know about and introduce us to one that you love!!  Let’s all find a new friend today! 

Today's prompt makes me think about how sharing on the internet was once thought of. At one time no one gave their real name online, opting to go by a nom de plume for secrets sake. If you've been online for any measure of time you have undoubtedly corresponded with Boba Fett's Uncle_987642 or partygirl_5678930987 at least once.

Today it seems like everyone is online and between FaceBook and blogs like this one it can feel like they all share everything about themselves. In the circles I exist in through my computer knowing full names and the places where people that you've never met in person live is common. Folks list their phone numbers on FaceBook and give out their email addresses like they were balloons at a fair. It all seems so normal now to most.

but not everyone...

People like me who share some of the more personal moments in their lives can lose sight of the fact that not everyone is as comfortable as we are doing so. In my mind the DOC is made up of the blogs, PodCasts and web sites that I'm aware of. That's the physical place that I imagine in my head. It's populated by the people that run, write and talk about diabetes in this digital world but it's life force is all of the people that read and follow. I certainly can't be aware of each and every blog and there is no true way for me to quantify the real number of people that read and benefit from them but I imagine that number to be large but not nearly as large as it could or perhaps should be.

As a group we are all very comfortable with computers and smart phones and it's no issue for those of us that share to be transparent in front of the world wide web. However, there is a larger number of us that can't or don't want to say hello. Those people are being well served by reading what the rest put into the world and that's not just okay, it's fabulous! 

I'm never going to meet most of you and I'm quite sure that a great many of you that read this will never take any sort of physical form in front of me whether that means an avatar or a handshake. So to all of you that will forever look like a tick mark on the counter that measures how many people visit Arden's Day I say, "hello friend even though we don't talk, I'm comforted that you are there".

**If you've gotten this far you are likely wondering why I didn't seem to write to the prompt. The short answer is that I don't do well in that situation... I don't write well to prompts but I do love Diabetes Blog Week! Stop back tomorrow to see how I'll loosely connect Tuesday's topic to something I want to say...

Update on Tuesday, May 15, 2012 at 12:00PM by Scott Benner

You are but a click away from reading my Day 2 post from Diabetes Blog Week 2012...

Bravery

I just read a blog over at the D-Mom Blog about post pump change highs and while I was reading it I thought, “I’ve said all of this to myself about a thousand times”. You should go read it but in a nutshell, some people experience significant highs after a pump change that seem unexplainable and they are difficult to resolve. 

I found myself asking Arden’s NP about this a few visits ago after I tried everything that I could think of. We’ve tried, bolusing from the old site before changing, bolusing right after a change, getting Arden’s BG on the low side before a change, avoiding food an hour before and after and on and on. Sometimes it’s worked and sometimes not, results that were not exactly anything to go on...

Our NP thought about my question and answered, “maybe it’s stress”.

I initially ignored the NP’s thought that the highs could be stress related because Arden handles the change process like a champ but last night she said something to me while we were changing her OmniPod that made me rethink things.

“My friends are lucky”, she said. “They don’t have diabetes and they don’t have to do all of this”. Then for a moment she looked really sad. We talked about other people and the trials that they face, I ended the conversation by talking about a few people that we know who are autistic and I asked her which she’d rather be. She thought and said, “autistic, because at least they can’t die from that, I could die”. We hugged and finished the change as I brought the conversation back to a good place - and then like a brave little girl, she was off to play. 

For ten minutes last night Arden had to think about her health, her mortality and life in a way that most small children never do and you know what, it is stressful. 

So here’s my new thought. A lot of us take solace in the fact that our kids are so brave but maybe that thought is more for us then it is for them. Maybe, while they are sitting there with that brave face and hardly flinching as we poke them, maybe they are thinking on a level that we aren’t aware of. Let me change that... they are thinking about serious personal issues on a level that we as parents are trying to pretend don’t exist. Pretending, perhaps because there is already too much to think about, too much to stress about. 

I’m going to share this with my wife and suggest that we spend more time talking about type I with Arden then we do now. Right now it’s all management and getting through a day but I think that probably isn’t enough. Arden doesn’t just need a good daily outcome, she needs a good life-long outcome. 

Thanks to Leighann for writing something that made me confront what I saw last night, I may have pushed it down otherwise.

That’s it. Something to ponder.

**

The following are archived comments from this post. You can post new comments below.

Tonya

Thank you so much for writing this post, Scott. You're so right about the 'pretending' we do. Our daughter might be unable to verbalize these thoughts the way Arden did, but I know she is processing it in a similar way, in her 4 yr old mind. Thank you for reminding me to always keep that in my T1 Mommy mind. Thank you so much for sharing this.

Wednesday, May 18, 2011 - 11:37 AM

Lisa Alexander

Your post just brought me to tears, but that's ok...I needed that.  My son was just diagnosed in Dec (he's 3), so we are still pretty "new" at this, but I have found myself MANY times telling him that he is my hero, that he is so brave and telling people that he seems unaffected by this new life and bragging about how well he's handled this change in his life.  You are so right though...maybe they are just putting that face/attitude on for us parents because they feel they have to or feel that WE need it.  Thanks for this...it was an eye opener.

Wednesday, May 18, 2011 - 04:05 PM

Katszr

My son is turning 17 on Monday....he has been T1 for a year and a half.  The amount he has matured since diagnosis is tremendous.... it forced him to grow up and think about life in ways he might  not have been if he didn't have this....  He actually has said...  "Any day I wake up.....is a good day."  So.. yes... they become mature...beyond their years.

Wednesday, May 18, 2011 - 10:03 PM

Susan

Yes, your post brought me to tears. I think I do a lot of fooling myself. She has a cousin that is autistic, and as a teacher, I see many children with learning disabilities. I am always quick to think that I am lucky it is only T1. Your daughter is right though. None of those things will kill her. That is the underlying threat a person with T1 lives with every minute of every day. I am thankful I have a happy, loving daughter who is socially and mentally well-developed, but if I am honest with myself, there is a part of me way down deep inside that is very resentful that diabetes has insinuated itself into my family. Will I continue to fool myself? Absolutely! This challenge will not defeat me or my daughter. I refuse to let any type of defeatest ideas camp out in my head. Those thoughts are not welcome. They can introduce themselves and be recognized, but they are not given a seat and allowed to become comfortable. My daughter is not really old enough to truly comprehend the seriousness of her disease, and I don't use scare tactics to make her compliant (If you don't take your shots you could die or if you don't eat enough you could die....). I wish I would never have to witness the day she understands her own mortality. I do not want to see that innocence lost and the look in her eyes at that moment.

Thursday, May 26, 2011 - 03:54 PM

Scott

Thanks for all of your responses, they add so much to my original thought and I'm so happy that you took the time to post them!

I'm sorry that I made you cry... :(

Wednesday, June 1, 2011 - 09:23 AM

Diabetes Blog Week year 2, day 3

 

This topic is easy to write about because there are so many moments to choose from... and of all the crazy stuff that has happened since type I has been in our lives, this singular moment has all of the elements of a classic blooper. It has horror, the element of surprise, uncertainty, humor and something to clean up at the end - the only thing missing is that no one got hit in the nuts with a fungo bat...

This moment happens at 1:20 am the evening that the photo above was taken and includes a blooper that pays off with comedy three times! We were packing up our stuff in a Disney hotel room to make the transfer early the next morning to a Disney cruise ship. We had just finished our last day of the park side of our park/cruise vacation - our first since Arden’s diagnosis.

When I think back on the events that led to this ‘blooper’ I identify two main factors in it’s creation. One - this was our first effort in administering insulin in a significantly hot climate and two, Arden saw a little boy with a giant popsicle on our way back to the hotel around 10 pm. Now understand, this popsicle was legendary, a foot long and twisted like a taunt, fat shoe lace and rainbow colored to boot. Arden begged for one of those popsicles and we got her one. She ate it, we injected (pre OmniPod days) and went upon our merry way. 

Fast-forward to 1:20 am. Kids are sleeping in the other room and Kelly, myself and my brother Brian are stuffing our clothes into luggage, sharing old stories, fond memories and laughing the night away. It was a great few hours right up until...

The grunting screams bellowed from the other room. Now I have to give Kelly and I a bit of credit because we had already weathered a seizure from too much insulin a month or so after Arden’s diagnosis and so we immediately recognized the grunting and we leapt into action. One of us went and got Arden (Kelly if I remember) and the other got out the fast acting glucose gel.

Now I know what you’re thinking, “When the hell does this get funny?”. The answer to that question is right now. 

I don’t know how many of you have navigated a low BG seizure but it’s a daunting few minutes and while I believe that you’d all be fine handling one, hind-sight may show that you weren’t exactly at your best in the moment. For me, I forgot to pull of the tab pictured on the left before I attempted to squeeze the gel from the tube. When the gel didn’t come out I didn’t do the reasonable thing and look to see why, instead I just squeezed harder. That’s when the opposite corner of the tube popped a toothpick sized hole in it’s corner.

Blooper moment number one happens as we finally notice that the corner had blown open, figuring it out when we saw the sugary gel collecting on my hand. Kelly and I made the “WTF” face at each other and then without missing a beat I flipped the tube over and used that corner to get the gel into Arden’s cheek. Had Arden not been seizing I’m 100% positive that we would have cracked up in this moment. Kelly held Arden during all of this, (she is such a rock star mom) the seizure subsided and we got Arden stable and put her back to bed. Blooper two happens moments after the seizure stopped, we turned to see my brother looking like a crazy cat caught in a trap. He was freaked out, bug eyed and spinning in what he would describe to us the next day as a, “useless circle”.

As quick as this disaster began, it ended. There was a tension in the room and it would be relived when we saw the lightning bolt esq lines of glucose gel squirted all over the hotel walls and door. I had been squeezing so hard that the gel was flying from the small hole like a laser... we laughed like a room full of mental patients upon seeing the gel on the walls and then we cleaned it up and finished packing. It’s the hardest anything diabetes related has ever made us laugh and I hope that you got a laugh from it too.

One final thought. They should make the corners of the tube out of the stuff that the tab glue is made of... and you should follow me on Twitter @ArdensDay. And while you’re here why not check out the rest of the site (I hear my post fromyesterday is quite good :)

**

The following are archived comments from this post. You can post new comments below.

Liz

OMG that made me laugh sooooo hard! Thank you for sharing your...ummm....very comical perspective of a very serious moment!

Wednesday, May 11, 2011 - 01:07 PM

Karen G

Oh my gosh, I never would have believe a seizure story could be funny - but you've made it downright hysterical!!!!!  Thank you for sharing and for showing us that we can find humor everywhere.  You are amazing!

Friday, May 13, 2011 - 04:45 PM

Scott

Karen,

You're going to make me blush...

Wednesday, May 18, 2011 - 11:19 PM

Briley

Oh my.  I hate those little tabs!  Now I guess I know what to do if I can't rip it off during a low :P

Tuesday, May 24, 2011 - 12:18 PM

Diabetes Blog Week year 2, day 2

What should I write about and should it be funny or serious? Usually I know what I’m going to write about before I sit down but tonight for day two of diabetes blog week, I’m going to decide with the keys.  Today’s topic is an invitation to write a letter to something or some one.

The recipient possibilities are nearly endless. I could easily write to Arden and say so much, to my son Cole for putting up with all of this as well as he does. My lovely wife Kelly definitely deserves to be told how amazing she is...

I could thank Arden’s OmniPod, DexCom 7+ or the diligent school nurses that we are so lucky to have. hmmmm... I could rant about a number of things but... wait, I’ve got it.

Dear Grief, Perspective and Exhaustion,

You three are kind of the ghosts of diabetes to me. I grew up fairly meagerly, my parents divorced when I was thirteen, we never had any money and generally things didn’t seem to go our way but I was never a sad person. I’d say that my parents getting divorced was the single worst thing that happened to me in my formidable years. With the exception of the passing of my Grandmother, who I was very close to, I didn’t have very much experience with grief. 

Finding out that your child has a disease that is not curable, demands twenty-four hour attention, can cause death if not properly managed and may likely shorten and or impede her life even if we follow every step correctly, well, that’s about the most succinct example of grief that I can imagine. Arden’s diagnosis felt much like you’ve heard other terrible things described. That is grief, when you arrived I felt as if a truck had been parked on my chest much like the time I realized that my first love stopped loving me, except this was a million times more intense and it lasted much, much longer. You made me cry, and stare into space more then I care to remember. For a time, I thought that I beat you and for all intents and purposes I did. You don’t loom over my days anymore and I am able to ignore the fact that you lurk around every corner and that one day I fear that you’ll return to show me that I haven’t seen anything yet. Still, I’m a better person for having met and tussled with you. I’ll thank you for that and for introducing me to your partner perspective. I want you to know that in the time between now and when we meet again I’m going to be preparing  because I don’t want you to land the first punch again.

I won’t bore you perspective with another note as I’ve mentioned you before here on this site. You’re an interesting fellow perspective, a master of disguise really. You appear different to each person that you introduce yourself to and your gift is back handed isn’t it? You have life’s ultimate lesson to impart but the recipient can’t be taught the entire truth without being shown the darkest depths of their own fear. The real irony is that the enlightenment you gave me came at a price that I wasn’t interested in paying. I detest that you chose us and at the same time, I thank you for your gift. Without the knowledge that comes from knowing that our dear child may pass at any time for the want of a cookie... Well, we wouldn’t feel the peace that comes from knowing how truly unimportant most things really are. I walk this life with a calm that only you could have given me - though I much preferred my former ignorance to this and would gladly trade it back if you are interested.

The knowledge that there is only one thing in the world that is worse then living everyday with diabetes is oddly freeing. The calm that accompanies having, what I believe is the widest perspective allowed by nature has centered me in a way that I’d have never imagined possible. Sadly, the pursuit of these truths and the daily practice of them leads to  one place - exhaustion.

The constant state of needing a nap that Kelly and I now exist with is the byproduct of grief and perspective’s lessons. I am winning the battle against exhaustion, having trained myself to live rather well on a few hours of broken sleep. I know that there are days that I function better then others but what frightens me is the concern that I can only keep this up for a finite amount of time and while I don’t worry about what may one day happen to me, I do worry that I won’t be able to keep this up for the amount of time that Arden requires.

I loath what the three of you have done to Arden and our family. I shudder when I think of all the turbulence that you’ve needlessly added to our lives and yet I can’t imagine understanding the world and this life as clearly as I do without your uninvited presence. You three are my metaphorical ghosts of past, present and future. 

Scott

You can follow me on Twitter @ArdensDay 

See my day three post about diabetes bloopers here.

**

The following are archived comments from this post. You can post new comments below.

MHoskins2179

Thanks for such an honest and heart-felt post, Scott. It's amazing to see so many within this growing Diabetes Online Community taking part in this and sharing these incredible perspectives, not only today but every day this week and all the rest. I live with diabetes myself, but can't imagine what it's like to be one of the superhero parents acting like a pancreas. Props to you, and I seriously hope that someone somewhere is listening to your letter to grief and exhaustion.

Wednesday, May 11, 2011 - 12:51 AM

Penny

Just wonderful, honest and forthright Scott. Thank you.

Wednesday, May 11, 2011 - 06:22 AM

Ali

As a parent of two children with type 1 your letter truly touches me.  Most days you feel that no one truly understands how this disease affects every minute of our lives and then I read this and feel comforted that there are other parents dealing with the same stuff as me.  

I can't wait to read tomorrows blog!

Wednesday, May 11, 2011 - 07:44 AM

Type 1 Advocate Gramma

Thank you for putting into words..the feelings that so many of us can not express...Wow!

Wednesday, May 11, 2011 - 10:12 AM

Scott

I am overwhelmingly touched and humbled by all of your wonderful comments, thank you!

Wednesday, May 11, 2011 - 11:24 AM

Sherry

This was just excellent! I can relate to every word. Thank you for writing this.

Wednesday, May 11, 2011 - 08:04 PM