A1c Guilt

Its weird.  When we get our A1c, I hate telling other people what it is.  We work hard but I know a lot of other people who work hard too. We use a pump but they use a pump too. The only CGM we have is our own regular testing. Despite all of this, I have friends who struggle to see an A1c under 8.  We have rarely, in twelve years, seen one over 7.  

I have no delusions of this lasting forever. I know my son will hit his own walls when Mom is not around. I know that I have provided a cushion for those years however. I have been told this cushion may help him during those rough years reducing the chances of complications. I pray so. 

Despite that fact, I rarely publicly state his A1c.  I feel guilty because we succeed where others struggle. I don’t see us doing anything different. Maybe we are just lucky. 

My son actually sees diabetes has relatively easy! That scares me.  He says,
“its simple.  You count the carbs.  You give the insulin.  You test. You adjust. What is the big deal?” 

Wow.  I know its not that simple but perhaps it is good that he doesn’t see it as that big of a burden or a problem. I know he sees it as an annoyance. I know he sees it as something he would rather ignore but it does not appear to be a “challenge” to him.  It is simply his life.  I guess that is one thing to be grateful for. 

What’s Your Favorite Number?

I once pondered my favorite number. Here is that post…

Everyone always asks you “what is your favorite number?”  For whatever reason, mine has always been six.  Today I realized how much I truly love that number.

Last night I tested my son at 2:30am.  I had changed his basal rate was I was expecting him to be either in range or high.  I was figuring on the high because we only seem to have readings fall into one category or the other–high or low. I was happy to see that he was 6mmol (100) and headed back to bed with a smile on my face.

This morning I began to think about numbers.  A high (anything over 12 in my world) causes a groan–hormones are raging or we miscalculated a bolus and I am a bad pancreas. A higher high–something over 16 (290) causes a slightly larger reaction–CRAP! What is wrong? Did we forget a bolus? Is the site in? Is the insulin bad? Is there air in the tubing? Will this correction work or should I inject? Crap!

There is also the dreaded non-number.  You know, when the meter simply says “HI” and you know that its not being friendly and wanting to strike up a conversation.  That is the reading that instantly gets the “Oh SH!#” response followed by the injection, ketone meter, jug of water, new site, new insulin and a lot more cursing wondering where I went wrong. I am now a colossal failure as a pancreas and have to get serious FAST.

On the other side of the coin, we have the number 5. I hate a five at night (90 for my American friends).  A five is a number that is close to six but far enough away that it could easily turn into a four…or less.  A five keeps me awake at night. I wonder which way it will go.  Will it make it up to my beloved six or will it tank to an unwanted two?

Fours are much more simplistic.  Add a small amount of sugar.  Its too close to call so I assume we are heading to a low.  Add a tablet or a bit of chocolate milk and rest assured that a crisis has been averted.  Well don’t rest too soundly because I have been wrong before and he could still tank but its a start.

Threes are a two tiered panic.  The first three I see at night, I respond with “crap”! I have to be a bit awake and somehow get glucose into my child.  The second three (or worse) means I am wide awake and cursing the arrival of diabetes into our lives.  I then know that this will be a long night and I will be tortured by its memory long after he has climbed back up to my special number–six.

A two or one? Well they instantly put me in five star, full fledged, try not to panic, but What The…??? freak-out mode.  These numbers have me clambering for glucose and praying I don’t need the glucagon.  These numbers have me watching the clock praying for the next reading to be so much better.

Yes, six is a wonderful number. Its peaceful.  It means I have been a good pancreas.  It has a serene sense to it.  Even a 6 in an A1c is fabulous.  I love six…don’t you?

Pancreatic Dynamic Duo

What was your reading?

8.1 (145ish).

Two hours after you ate…I did a great job as a pancreas this morning!

What? Who?? You? Excuse me, but I did a great job!

How do you figure that one? I calculate the bolus. I figure the carb to insulin ratio. I establish the basals and this morning I got it right.

But I push the buttons! If I didn’t bolus I wouldn’t be in range would I? That means that I am the good pancreas.

He had me there! You’ve got to love the logic and the validity of the argument!! “Okay WE make an awesome pancreas.”  

He was okay with that but still felt that he deserved the bulk of the credit. I pray that one day he will take all of the credit and still will be doing a great job.  At that point I will know that he paid attention and learned well.  

For now? Well together we can be a pretty good pancreatic team! Despite the complaints, the grumbles and the missed tests, working together for the past three months we have again managed to keep his A1c under 7% and brought it down three points from the summer when he does the bulk of his own diabetes care.  Very proud momma…aka the other half of my son’s external pancreas 🙂

My son is Channeling Dr Seuss

Yesterday we went  to our regular diabetes clinic. I love my son’s new endo.  She is young and interesting.  Mainly though, our trips seem to be give blood for our 3 month diabetes report card–also known as his A1c.  

This time around the endo asked my son how he thought his diabetes had been on a scale of 1-10. He gave it an 8.  When she left I said “an 8?”
“Yeah, I would have said 7.5 but I thought I would bump it up to an 8.” 

I laughed and said that diabetes had been rather miserable for most of the summer. I also said that his testing was a little less than an eight as well. He just shrugged his shoulders and grinned. 

As we drove home, we discussed the long wait time. It took over two hours to speak to the endo and then have the nurse draw the blood for his A1c.  He said that the results of his next A1c should be even better than the last one.  I was pretty shocked by that one. His last results were pretty awesome considering we are still living in the middle of puberty’s hormonal nightmare as well as the teen age desire for greater independence and automony. I reminded him of the bad sites and highs he had experienced over the summer.  I also noted that when he was away on his own, he was not always stellar about his care

With that, he quickly became Dr. Seuss and told me how wrong I was.

“Me? I always test! In fact, when Dad would say, Who made that mess? Well I would look around and say, Test? Test! Of course, I will go and test!

If Dad said, Son, you are being a pest!  I would immediately respond, Test? Test! Of course, I must test!”

My sides hurt. I shook my head. I some days wonder where he came from.  I will remain less optimistic about his upcoming A1c but will definitely start using a few more words like mess and see if it still prompts him to “test”!

Diabetes Nirvana

Despite the latest insulin fiasco, my son claims that his vacation from me is going well. I am still waking up every 3-4 hours thinking that I should check him but am enjoying rolling over instead. I have one more night to enjoy before Diabetes returns to kick my sorry butt.

In the meantime, life has been fabulous in a way that only makes sense when you live with Diabetes.  When I returned home, the dreaded A1c report card was sitting in the mail box waiting for me.  Our nurse had told me to email her next week with the results of his A1c and his routine celiacs blood work so I was surprised to see a number in the A1c section. My surprise quickly moved to elation when I saw a low 6% result!

All of my frustration, complaining, sitting down and logging, nagging, and logging some more had finally paid off! I was over the moon! I wanted to scream and do a happy dance in the middle of the living room.  Larry asked if this result was something permanent.  I told him no.  This just means that we did a good job over the past three months and now we have to work again to do the same thing over the next three months. The plus side is of course the theory that it will offer him some metabolic protection later in his life. 

I texted my son to let him know the amazing news.  His nurse had told him at our last visit to be happy with an A1c in the  7s%  but he knew that I wanted lower if possible.  I told him “ur a1c came back and u did an AWESOME job!”.  His response was “Great. I am going 4 a ride.  Text u later.”  Okay, so I remained the only person excited about this. I went to bed that night feeling so much better for all of the nights I spent awake.  I was winning. I was protecting my son to the best of my abilities and the result was a good grade from the lab!

After such an awesome diabetes day, life could not get any better right? Wrong!  I had a parcel waiting for me that I had to pick up. On the way over to the depot, we stopped in to pick up a few things at a local grocery store.  As I went to pick up two liters of milk, something caught my eye–Rockets in a box.  Rockets (Smarties for my American friends) are usually found here near Halloween and come in small rolls.  These were big Rockets in big packs. They looked just like glucose tablets.  That got me thinking…how many carbs were there in a Rocket? It turns out that not only did they look like glucose tablets, they had the same carb value…at half the price!! Oh yeah, the diabetes gods were smiling on me once again. 

Next it was on to the Purolator depot.  The box I picked up was huge.  Inside was a new Accucheck Mobile for us to test and review.  I love gadgets. I love diabetes gadgets even more.  And the thing I love the most? Free diabetes gadgets!! We haven’t had a new meter to test out in ages so I can’t wait to pull it apart and see what we think.  My son liked the Accuchek Compact although I was not that fussy over it.  This one seems really heavy but it could be the packaging.  I will let you know what I think in the coming month once we actually try it out and see.

I decided to text my son with the latest good news–new tablets and a new meter. It was diabetes nirvana!  He was equally as excited and surprised me with a text that said “What was my A1c?”  He was paying attention! 
I told him “6.3” 
He replied “That’s really good!” 
I said “FABULOUS! It shows what we can do together! Keep logging, keep testing, and we will keep doing a great job.”
“K, I am going riding now. TTYL”

At least he showed some interest and a real understanding of what that meant.  We are making some progress….its painful but there is tangible proof that something is getting through!

The trip to get the dreaded diabetes report card!

Yesterday was our third visit to our new diabetes center.  Each time we go, I find myself watching comparing, and thinking way too much.  Each visit brings new faces–new team members and new faces that you know are also living with “the beast”.

We went to the same small clinic for ten years.  We saw the same doctor for all of that time, the same nurse for most of that time and the same dietitian for half of that time. My son’s doctor believed in pushing us.  He would delay returning my calls so that I was forced to make decisions on my own.  He guided me and then left me to fall on my own–being there to laugh and help me up when needed.  He forced me to make my son do more earlier so that he could handle being away from me.  During the time, I often grumbled and wished he didn’t have so much faith in us.  Now I remain grateful.

My reputation preceded our arrival at our new clinic. Some of the team members I had known for years, sat on committees with or simply socialized with at conferences.  Yesterday I met the woman who liaisons with schools and deals with school issues.  She asked if I was a diabetes educator.  I said not formally but yes I educate people about diabetes.  I had never really thought of myself like that before but it was an interesting way to phrase some of what I do.

The downside to our new clinic is that we do not always see the same doctor.  I am not sure what I think of that yet.  Both doctors we have seen have been great so it may be okay.  Yesterday’s doctor looked at what we were doing and seemed somewhat surprised by the fact that I make all of his changes on my own. My first thought was, after 11 years I would hope so, but then I thought back and was again grateful for a doctor that pushed me to learn this skill.

When we saw our nurse, my son sat far away from her hoping that she would forget that he was to get blood work done with this visit.  She didn’t.  He was less than happy to be told that he could “hop on down to the blood collection unit today.”  He moaned. He groaned.  She said that she was a stickler for blood work and that they do routine screening on his thyroid as well as checking for celiacs.  I was over the moon! I loved that they were proactive. I told her that this was great as far I was concerned.  My son was still moaning. He thought the idea of going to a place that referred to itself as a blood “collection” unit was ghoulish at best.  He had great visions of some sort of blood letting experience.  He could see saws chopping into his veins and the blood pooling in buckets placed all around him. Yes, he has developed a wonderful imagination!

I have no idea what his A1c was for this visit.  I am thinking that it should be back closer to the range that I like.  The nurse told my son how wonderful his A1c’s of the past had been. I covered his ears.  She laughed at me and said puberty is tough. He is doing great.  I reminded her that the first A1c he had there was his worst EVER, as in–in 11 years of diabetes.  I also stated that I felt that way because it also reflected a time of missed boluses and failure to test.  The next A1c, which had dropped slightly, reflected hard work and taking care of himself.  Again, while I would love to see it lower, the second one was much more in line with the care that I would like to see him give himself and therefore I was much more accepting of it.  I would still be much happier to see him drop back below the infamous 7% line though.

All in all, I think we will do well at this clinic.  My son has still not recovered from the fact that the will have to go back to the blood collection unit to donate more of his precious blood. He still needs to have fasting blood work and a few other tests done.  I am still surprised that his nurse was somewhat amazed that he was doing all of his own site changes.  And of course, I will never live down the fact that the dietitian opened his log book to the page that had written–Lunch:  juice, cookie  Supper: Banana split and slushie.  Really he does eat healthy most of the time…honest! It was a one off kind of thing we noted as she ushered us out of her office with a pamphlet on how to eat when dining out. Oh well, you can’t win them all!

Failing Grade

Its funny how everyone thinks of the A1c test if it is the true measure of your ability to be a pancreas. What is supposed to be a guide becomes a ruler on which to judge if we have “passed” or “failed” in our ability to beat the diabetes gods for the past 3 months.

Liam’s A1c was done about a month ago. We finally got the results yesterday. I knew I would fail. I knew I had been a bad pancreas. I knew that I wasn’t logging. I knew that Liam not testing and me not being on top of it all would come back to bite me. I also knew that my son had begun puberty and hormones were now seriously messing with our ability to get any sort of handle on control.

I failed. By my standards I failed rather miserably. I believe it is the worst A1c we have had. Yes it could have been worse but I still feel that I have failed. I know there has been a burn out factor and still the good old “mommy guilt”. I am burnt out after all of this time and yet my child will have to carry this burden for much longer than I will. Who am I to burn out so quickly?

Good or bad, Liam has a much more lax attitude towards his disease. He takes things as they come, corrects as he goes along and does not seem bothered by much. Mom takes each high or low as a personal failure and over the past few months it has been worse than ever. I have become my own worst critic. That is not a good thing.

I have had to step back and look at the advice I give so many newly diagnosed parents…look at the world 4 hours at a time. If you have a good 4 hour period be proud and know that you were a good pancreas. If you get a longer stretch with good numbers then do a happy dance. You were amazing! We have seen good stretches. I have made good calls but I am still sending myself back to school. Time to dig out the John Walsh “Pumping Insulin” books and make some new notes. I haven’t sat down with any of them in a few years and I think I need to start fresh. Its time to clean out the cobwebs and look at things as if I was just starting out. Its easy to get complacent. You cannot let diabetes rule your life but complications are real and a good respect of the “gods” you are playing with is not a bad idea either.

Back to the books!