The Meter Ate It

"Why are there no readings from the time you woke up until an hour ago? I asked you specifically about testing more than once today. What happened to the readings?" 


I was going through my son's meter, which I have been doing each day, to check for patterns and see if some of the highs he experienced while away were due to carb counting errors or if there were changes needed. 


"What? No readings? I know I tested.  Well, I know that I tested before supper. I told you the reading. It has to be there. Maybe I used the other meter. Let me check."


Of course the other meter produced no tests either. He reminded me that he had told me his reading before supper, which conveniently was a perfect 7(126).  I reminded him that he had lied before; and I thought to myself, you lie with perfect numbers because I have lectured you about the dangers of me making changes based on false numbers.


He continued to swear his innocence and give me his best Bambi look. I wasn't falling for it. I suggested that perhaps we needed to go back to him showing me each time he tested so I could verify that it actually happened. He continued to state that there had to be a test in his room somewhere. As I left his room I suggested that he find it and bring it to me when he did. 

I walked down the hall shaking my head.  Raising children is not an easy task--ask your parents and your grandparents.  Raising teens is a bigger challenge. Raising a teen with diabetes? Well they tell me we will both make it through and I will look back going "Wow, that wasn't so bad."  In the meantime, I guess I will be triple checking my son's glucometer for the next little while.  

And then there was the bad news

A few hours after my son got home from his time away, I asked to see his meter. I knew there was going to be a problem when the excuses began.  


"Well you see, you won't find all of my readings on that meter. I used another meter in my shed."


I asked where the other meter was.  Of course he had left it behind at his father's.  That was convenient! He said that he had done a lot of testing on the meter he brought home in the last few days so it would give me some idea of what had been going on.  


As I scrolled through the meter I found readings that were between 20-30mmol (360mgdl+).  I tried to breathe.  I asked him what was going on. 


"Well, I was high this morning because I didn't want to go low last night and interrupt the little bit of sleep I was going to get.  You see how I was low at 11pm? I had a juice and a granola bar to cover it." 


"A little bit of overkill don't you think? You were just low (3.7/65), a juice would have done it.  If you weren't going up that quickly after 15 minutes then you could have added more without sending your readings through the stratosphere." 


I continued to scroll through the meter and note the results.  I continued to work to breathing.  All of the readings were high and higher! What was going on? 


"I think my site was going bad.  See, my readings dropped once I changed the site."


"Dropped? When? Where? How long was this site in? You were running over 20 (360) for days!"


He replied that his site was a little old. He had probably gone over by a day or so.  Perhaps his site was as much as seven days old I asked?  He just shrugged his shoulders. I wanted to scream but instead I asked him about a cut on his hand. 


"When did you do that?"


"Yesterday."


"What do you think it will look like in seven days?"


"I hope it will pretty well be gone."


"So when you lance a small hole in your body for your cannula, how much healing do you think has gone on around it in seven days? When the tissue around it heals, it can't absorb insulin any more." 


He replied that he thought he could go 5-7 days before a site change.  I know that some people will with no problem but he has insurance, he is young, and I really didn't want to go down that alley with him so I replied that ideally sites are changed every 2-3 days. 


"Oh, well you see all of these highs have meant that I learned a lot this trip. I should probably do this more often. I never realized this stuff before. Now I know it. Wasn't this a good thing?"


I had to laugh because otherwise I would have strangled him.  None of this information was new. It was all stuff he knew before.  I told him that continuing to run that high would result in serious complications. He told me that he had been told that was hogwash.  I replied that maybe one or two highs would not kill him but doing this forever would quickly result in problems. To help him understand all of this, he was now definitely going to the Friends for Life Conference in Vancouver.  He needed some more training.


Once again he shrugged that teenage shrug and went back to enjoy being home.  I just sat and shook my head.  Maybe he would learn because of this.  Maybe one day everything I tell him about his diabetes care will have some meaning. In the meantime, I will continue to pray, to hate summer vacations and extended periods of insane bg levels. 
  

Waking up is a good thing

My son got off of the plane, stumbled towards me and yawned. He had to be up at 6am and for a teen who likes to sleep until noon, this was just way too early!

After our initial chatter he turned to me and said "You will be happy to know that I now wake up from my lows."  


"You mean you woke up more than once?"


"Yeah, I wake up feeling starved. I hate it. It messes with my sleep."

"Waking up is a good thing. The alternative is not waking up!" 


"I know but it wrecks my sleep. I would rather have uninterrupted sleep." 


"That is not an option.  Waking up is a great thing. I hope you continue it!" 


"Sleep is a good thing. I would really rather just keep sleeping. That would be great."


I shook my head and attempted to explain that an eternal sleep was not an ideal. My son grumbled some more. He is not nearly as enthused as his mother is.  He understands my relief but yet another glitch in his life thanks to Diabetes is not at all welcome.  


Oh well! Hopefully we are onto something that lasts! 

How to cure ignorance

Recently there was an uproar in the Diabetes Online Community(DOC) regarding a comedy skit done by a well known comedian.  I did not see the offending piece partially because it was blocked from viewing outside of the US and partially because I really didn't want to go there. I was told it was exceptionally rude and offensive. 

Over the years I have seen many campaigns by parents of children with diabetes to set the record straight.  In some cases there was success (Disney held off on an episode of Miley Cyrus's show because of outrage at how a character with diabetes was to be portrayed). In other cases, there was no real change. 

I used to get completely outraged as well until I stepped back for a second. I began to realize that I knew nothing about diabetes before my son's diagnosis.  I now know far too much.  If I considered myself to be an educated woman and my knowledge was so limited then how could I be so quick to condemn others in the general public who get it wrong? I decided that I couldn't but I could educate.  So I did. 

Does this give the media a free pass? Was I saying that it was okay for reporters and writers of TV shows to get it wrong? No but again, I had to look at it from a different perspective--did they get other diseases right? Were they accurately reporting on conditions such as autism or MS?  Probably not. They dumb things down.  They simplify things and they get just enough information to make their stories interesting. Its all about ratings and readership but I still would take the time to point out to friends and those who would listen the errors I could see. 

So does my passivity mean that it is okay to use diabetes as the butt of jokes? No but then again, I also do not believe in racist jokes, sexist jokes, or homophobic jokes. I see nothing funny about bullying or putting down another group or individual to make yourself look better. I just don't find that funny.  

Someone noted that comedians would never dare do a skit about breast cancer but because diabetes has been portrayed as something preventable it is fair game. How do we fix this? Do we just let it go? No.  

I don't have the answers. I try to pick my battles. I have always believed that if I do not like something--be it children's programming or the jokes of a supposed comedian, I don't watch.  If you don't watch or don't read, then they do not make money and their point of view becomes unimportant once again. I won't promote them or name them and have people adding to their traffic and supposed popularity.  

I also believe in the power of standing up for yourself. I am open about our life with diabetes--the good, the bad, and the ugly.  I speak about it whenever and where ever I can. I invite people who live with diabetes to also be vocal--to dispel myths and present facts.  Its a powerful thing. It has been done before and we will do it again.  

Diabetes Mine recently posted an article about the new power of the DOC.  Perhaps with that power, we will begin to see change in how diabetes--Type 1 and Type 2 are displayed to the general public in all areas. Sadly the diabetes community has grown over the years. With that growth, I believe, will come a stronger and louder voice.  

My Diabetes Vacation

I'm back!!! Hopefully you enjoyed the stroll down memory lane while I was taking in the amazing beauty and history of Ireland. 

This trip was incredible for many reasons.  Obviously being in a country that is oozing history out of every pore was a dream come true for me. I love history. I spent a few years in university studying British history and this trip brought me back to a subject that I have always enjoyed. 

Another reason for it being incredible? I left Diabetes behind.  This was the very first time in twelve and a half years that Diabetes moved to the very, very back of the bus.  I kept in touch with my son about once per day.  Our conversations occasionally contained "What are your readings like?"  with his usual "Good" response. The amazing thing is that I never said "Good is not a number.  What is your reading?". 


I began the trip in my usual style. "Don't forget to reduce your overnight basal.  You were really active today."  
"Do we need to adjust that time we talked about or do you think the rates are okay?"


After a few days of enjoying the sights of Dublin and taking in a few local pubs, our conversations became more of "How's it going?"  and "What did you do today?" with only a small smattering of "How are your readings? Do we need to make any changes?" 

"The Brazen Head" The oldest pub in Dublin!

I have read that parents need to take a vacation away from diabetes. I have always felt it was important for my son to get any break he could now and then by me taking over bolusing, site changes, etc.  I often wish that I could do this for many others living with diabetes--give them a break when they have no one around who can.  I have never been able to give myself a vacation however. 


I am a mother. I worry. I wake up in the middle of the night prepared to test whether my son is with me or not. I look at meals and count the carbs.  I search for a meter two hours after a meal thinking that someone should be testing.  


On this trip, I still woke up in the middle of the night. I still wondered how my son's readings were going but it was not my most pressing concern. Getting up at 6am, being ready for the bus, figuring out where our next stop would be, how I would fit everything into our luggage and where the best Irish coffee was made moved to the forefront of my brain.  I never looked for a carb count until I ate a cookie on the final plane ride home.  

This picture was right side up but after a few coffee...

I will go through my son's pump and meter with a fine tooth comb when he comes home but while I was away?  It was something that I would deal with later. 




So my advice to all the parents out there? When your child goes to camp, spends a week with Grandma or goes away with their other parent for a period of time--ENJOY! Let go.  If only once.  Take your own vacation.  You have earned it.  As others told me, you have taught your child well so let them fly a little on their own. You are still there to fix any scrapes but the break will do you both good...speaking from experience!  

Is Diabetes More Deadly than Ever? The question remains

Is Diabetes More Deadly than Ever was one of my most read posts.  It was originally written in October of 2010 but the questions are still there. Our children are still dying but is social media making us more aware or is tight control trading a reduction in complications tomorrow for a higher risk of death today? 


Yesterday I heard of another child who died because of Type 1 diabetes.  She was thirteen years old--the age of my own son.  She had Type 1 diabetes--like my son.  She had parents who loved her and who were diligent in her diabetes care but she died anyway.  That is every parent's greatest fear.  She had hopes and dreams.  She wanted to die an old woman with a book on her chest...sadly she died before she became old or had any experience as a woman. It is truly heartbreaking.

This is not the first death from diabetes that we have heard of in just this past year.  This is not the first time that I have heard of someone so young being taken by this disease. This death led me down a path of contemplation.  Why were so many people dying? Was this something new? Did we lose children to this disease before? Had we traded rapid insulin and better technology for a higher chance of death?

Those of us who live with the unwanted houseguest called "Diabetes", know that with tight control which promises prolonged health is the risk of severe hypoglycemia and death. Its a risk most of us take with some caution.  We try to keep the A1c down.  We work to maintain "normal" blood glucose readings at the risk of becoming hypoglycemic unaware.  Its a scary balance.  Night is our enemy as we fear, as these parents did, of waking up to our children "Dead in Bed".

I put the question out to many parents yesterday--was diabetes more deadly now because of the advances we have or do we hear about death more because of social networking and our reliance on the internet?

The answers were mixed.  Many had a new fear of this age of puberty (the last number of deaths were young teens).  Were teens more suseptible because of insulin needs that changed on a daily basis with incredible swings?  Did adolescence and its rebellion breed a greater risk of deadly behaviors in children with diabetes?

Others felt that technology was a good thing.  We were not seeing as many complications as we once did but they noted that try as we might, we are just not pancreases.  We could not do enough to mimick Mother Nature.  We were not God and could not anticipate all of the body's needs.  Despite our best efforts, some form of complications or worse were likely to happen at one point. That was terrifying.

We have children and we realize a need to protect them.  Many are devistated by the diabetes diagnosis because they feel that they have failed to protect their child/children.  After diagnosis, the need to protect becomes even stronger because we failed the first time around.  Now it becomes our job to keep their bodies healthy and strong. We fight to make sure that they have a normal life--as normal as it is to live with syringes, pumps, glucometers, and glucose tablets with you 24/7.  To read of a death just shows us that our best just may not be enough.

Yes, I realize that my choice of pronouns has changed from someone else to me. I have always felt it was my job to protect my children and yet my son almost died because of diabetes and misdiagnosis.  It is now my job to turn him over a healthy body when he leaves my care.  Its a difficult job especially since he is at an age when he is looking for his own independence.  I, like many before me, face the challenge of trying to teach him to care for himself and to be there to pick him up and dust him off when he makes mistakes. Death however makes us want to hold them close forever and never sleep again. We want to be in their lives 24/7 and keep them safe.

So to get back to my original question--has diabetes become more deadly? Probably not but it is still no less scary and no less deadly.  Diabetes DOES kill despite those who think otherwise.  The fear is real and, while possibly magnified by the internet, the danger is still present. The answer? We need a cure.  Its sadly that simple. Until there is a cure, we will continue to hover and pray.  We will lean on each other in a way not available to generations before.  We will learn from each other and move forward but we will never forget those that we have lost....

For Eilish, for Paul, and for too many others.

A stroll down Diabetes Memory Lane

In time for the last day of the Children with Diabetes Friends For Life Florida Conference...


It must be spring.  There is still snow flying around outside and my winter boots were on my feet today but I have noticed a restlessness in the air.  I was reading a blog in which the author felt that maybe she was not doing enough in the diabetes community despite raising awareness and entertaining many of us. 

I have had that same feeling in the pit of my stomach.  That question of what are you doing and more importantly--how do you do it better?  I have yet to have any great epiphanies but it did motivate me to start a new project. I decided to "tweak" my website. I am seriously thinking about completely rebuilding and cleaning up the current format.  I found a search engine to make looking through the site that much easier but I still have to decide what my spring website look should be.  In the meantime, I decided that a movie of some of our greatest memories would be in order for the home page. 

I began a journey back in time as I looked through old photos.  I truly hate Diabetes with a capital H but the warm memories I found in the pictures really helped to ease the pain. I found pictures of a trip we went on to New York.  Many of our online diabetes friends got together and we had a fabulous day at the beach.  There was no awkward time of getting to know one another.  We instantly had known each other for years and the day was amazing.  

I found pictures of our trip across Canada.  Again, there were photos of the many friends we met along our travels.  There was a barbeque in Ottawa, a night in the interior of B.C.  as well as introducing Rufus, the bear with diabetes, to many of our family members. 

As I dug around, I found the photos of our trip to Friends for Life in Florida.  I remember again, sitting down to drinks with "old" friends and having my son disappear with his pals to enjoy his vacation.  There was basketball and Disney World rides for him.  There was pump failure and great contacts for my other son and I.  We found out that the best place in the world to have a pump malfunction was at a CWD Friends for Life conference.  The friends and resources you will find are second to none!

I came across pictures from our Friends for Life Canada conferences and began to look forward to reconnecting with old friends again this summer.  There were walk photos and I remained amazed at the generosity and enthusiasm of so many amazing people.

I still don't know how I will tweak the site.  I still am working on getting the movie completed and online.  I have however had a day filled with smiles and wonderful memories.  Thanks to all of the great people in our lives who helped create these memories and so many more!