A 30 day free trial

I was recently going through my downloaded items and junking things out when I came across this picture.  The graphic is a little odd personally but the message is poignant.

In the days when I was more active with diabetes organizations, I remember hearing about a group that had got local celebrities to pretend to have diabetes for a day. Its something that I always wanted to recreate. I knew that if a person truly walked in our shoes that the perspective they would gain would be greater than any lecture or story we could tell them.  Look how much we have learned because we walk this road? 

Can you imagine getting a Health Minister to pretend that they lived with Type 1 diabetes for one month–a 30 day free trial of a life with diabetes? Can you imagine then asking them to do it on a minimum wage budget? Wouldn’t it be amazing if magically you could make them “feel” the experience of being high because they could not afford to use an extra needle that day? 

What if we asked an Education Minister to become a parent of a child with diabetes for one month? From day one they would be aware that the child’s life is completely in their hands.  They would be sleep deprived from night time testing, lows and corrections.  They would be even more acquainted with their cell phone and it would not just be a distraction. It would be a necessary evil to monitor their child when he/she was away from them.  

Can you imagine them having to inject a child? To learn about glucagon and have them fully grasp what it means to have to use that tool? 

Can you imagine them feeling the frustration of knowing that you weighed the food, you counted the carbs, you dosed the insulin and something still went wrong? 

Would they understand how vital choice is? Would they grasp why we need pumps, CGMs and coverage for all types of insulin? Would they understand the stress of sending a child to school and leaving their life in someone else’s hands? 

I would still love to do this. I can see it as a reality show.  These people would have cameras that would follow them. No set ups like some reality shows.  Real children with proper caregivers in the wings “just in case”.  For those who are asked to live with diabetes, there would be random notes or messages that would be sent when they tested or throughout the day.  During a meeting they would be distracted and high.  While playing with the kids at the end of the day, they would become low and have to sit things out for up to an hour while they eat and get their blood sugar back in range.  

I can envision this. I can see the impact. I can see the power it would have.  Now I just need the opportunity, the backing, the volunteers, and the cameras! Oh what an education we could give! 

Oh versus Argh!

I had reminded my son numerous times that it was site change day.  Our movie ended and he headed off to his room. I followed a little while later to give that one last push regarding a site change. 


When I looked into his room, he was sitting on the bed with his site one hand and his other hand was poking his leg. 


“What are you doing??” I asked incredulously. 


“I am looking for a good spot. I need to find the place that when it goes in I go–Oh!Its in?  rather than YIKES! EEK! Man that hurt!”


It made sense I guess but I just look at the spot, find a place with no injection marks, clean it and jab.  Its a simple process.  He was still routing around his leg. 


“Why don’t you just stab it and get it over with?” I asked. 


He looked at me like I had lost my final marble.  What planet did I come from, I am sure he wondered.  Finally he replied that it had to be just the right place. He lined up a spot and then took the site away. He closed his eyes.  He opened his eyes. He made a few faces. 


“Just count to six and BAM! Its done. Why are you clicking it a hundred times? You will wear out the inserter before you ever start.” 


Once again “the look”.  He explained that by clicking and inserting in the air he was loosening it up so that it would be easier when it hit his leg.  It was now my turn to look at him like he has lost a few of his precious brain cells. 


I continued to watch, wonder and press as to when he was actually going to put the site in instead of mauling his leg. After much grumbling I heard the “bang” and….


“AAARRRGGHHH! You shouldn’t have pressured me. You had me hit the wrong spot!”  My son continued to moan and groan in pain as I checked to make sure the tape was in place. 


I felt rather bad (but I couldn’t tell him that). I left the room and shook my head.  Each day he (or I) stab his fingers and make them bleed numerous times.  He says it doesn’t hurt anymore but does it hurt any less? Every 3-7 days (his count not mine) he will stick a larger needle somewhere into his body so that he can live another day.  


I just read a blog post by Scott Johnson in which he notes that diabetes is a constant attack into every aspect of his waking and sleeping life and the only respite will be when he dies–or there is a cure.  It breaks my heart to read this. It breaks my heart to see others go through this and even more so to see my son living that same life. Diabetes is a cruel disease.  

Uncharted Territory

I was recently going through my son’s pump and stopped in shock.  I was struck by how much things have changed since he first began pumping. 


When my son first got a pump, we needed to have the ability to use very small basal rates. Despite having a 300 unit cartridge, we would only fill it to 200 units and still have to throw some out after one week. 


His carb to insulin ratios were of course much different and his basal rates were never close to 1 unit per hour.  


Over the years, I have gotten used to some of those changes. I learned that sweeping changes would no longer kill him. Puberty was turning his insulin to water and my brain was on overload. 


The one thing I never expected however was the importance of the midnight carb to insulin ratio.  My son didn’t eat that late.  On a really special night of roasted marshmallows he might eat at 10pm but we didn’t need to worry about anything after that.  The ratio set after midnight was just to satisfy the pump.  It had no real significance…until now.


Now that carb to insulin rate is just as important and used as often (or more) than breakfast! He often finds himself creeping the halls late at night searching to see what goodies are hidden in the fridge.  


It took me a bit to realize this. At first I thought, oh he needs his overnight basal rates tweaked. I began to look much more closely at my son’s eating habits. There were boluses at midnight and one in the morning! This time now mattered.  I had to make changes and pay close attention.  What had happened?

Oh yeah…I have a teen son! What was I thinking?

Give him an Inch

I stumbled into my son’s room at 3am.  I grabbed his meter and tested. He was 18(325).  What the??? He was almost low a few nights ago.  He was a little high the night before but this is more than just a little high. What was going on?


An eye looked back at me. “Do you feel high?” I asked. 


“No” He mumbled from his bed.  


I checked his pump and he had corrected at 1am.  What was up? I asked him and he made some sort of excuse. I looked a bit closer. When was his last site change? BINGO!


The site reminder said he should have changed his site two days ago…around the time of the mysterious increases in bg levels.  Did said son do this? No, he pressed ignore and continued on with his XBox game.  


I have been obsessing over his testing. I have randomly checked his meter. I have made small tweaks BUT I did not write down on my calendar when his site needed to be changed (I am sooooo going to miss this feature when we have to give up our Cozmo).  Mom not nagging plus son ignoring equals a bad site that was causing unnecessary highs.  

Moral of the story…Mom needs to be more on the ball checking readings and noting when sites are to be changed followed by harping until those sites are actually changed.
 

The North and The South

For years, those of us living with diabetes in Canada have looked to the south and drooled.  Because of the much, much larger market share, the US gets all of the “good stuff” long before it comes to Canada. In fact it took us so long to get the Navigator, that they stopped making it before the product ever crossed the border!


Our American cousins have had the DexCom for years giving them a choice when it comes to CGM technology.  They had OmniPods before us and now will be looking at yet another pump choice in the Tandem TSlim in the coming months. We got the Medtronic Veo pump that they want first but that seems to be where our advantage ends. 

In talking with a friend recently, we also noted that there seems to be a big difference in attitude between US pharmaceutical companies and those working in Canada.  In the past two years with  Roche Summitt and Lilly Diabetes having their own Blogger Summitt in 2012, these companies have invited people living with diabetes to get together with pharmacy and discuss technology, needs, and direction.  This was a huge thing in the diabetes world–big companies wanting to know what patients want? Sadly, despite the increased number of diabetes diagnosis in Canada, we are not seeing the same sort of engagement here. 

Don’t get me wrong, some companies in Canada do reach out to the consumer.  Animas just did a great PR event in May showcasing people with diabetes across the country.  Roche invited bloggers and their readers to get engaged and give away free cash in the spring. Despite that, there still seems to be a feeling of isolation and we just don’t matter. 

As my friend noted, “A few years ago, we would get a newsletter or an invite to a workshop, special speaker, etc two or three times per year.  Now…nothing.” She is not alone in this.  Are the major players that intimidating and confident that they do not feel that they need to engage the market? Do the other littler known players not have the budgets to do it at all? It makes you wonder and personally, it makes me sad. 

Not only are we not getting to do the “fun stuff”, not only are we not getting access to the best technology, we are also forgetting about the other players on the board.  If you ask Canadians what pump companies are out there, they will most likely say Medtronic.  Some will know Animas but then things get fuzzy.  They may know that OmniPods are now available north of the border but chances are that they have completely forgotten that Roche even makes a pump.  This makes me sad because it is so important for consumers to make an educated choice in their diabetes care. They can’t do that if they don’t know that the products exist. 

I wonder how many people realize the vast choices in glucometers or that they have a choice of infusion sets or rapid acting insulin? Again, it  makes me sad and leads to me ask, is it really all about the money? Does our Canadian perspective and the needs of those of us in the northern part of the western hemisphere not count for as much? Is it bureaucracy? Does the Canadian government and various legislations make it difficult for pharmaceutical companies to be as engaged as their American counterparts? I wish I knew the answers. Some days I think it would just be better to move south…  

  

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!