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!  

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!

Sometimes your the bug

Originally posted in 2009 but the feelings remain the same....

Today I am definitely feeling like the bug. Its after midnight and of course I was dying to get to sleep. I set my alarm for early tomorrow morning...my son's last day of school. I found a meter and a strip. I grabbed a lancet, waded through all of the junk that the boys had left on the stairs rather than putting away and was off to test. One last check for a few hours. One check and I could sleep! We had been out for pizza to celebrate good grades so my youngest son would still be high. He was 16 (288) earlier so you know I was going to be able to rest.


Wrong! I took the meter. I filled his finger with blood. The strip refused to suck. What the???? Okay, I cleaned the finger. I got more blood. I tried again. It just barely accepted the blood. I waited for the reading...E5. It was an error reading!! Not enough blood. Oh the lovely four letter words that were on the tip of my tongue as I headed back downstairs. Let me try this again.


New meter. This one had to be better. New strip. Same lancing device. Back up the stairs, this time grumbling and picking up items as I went. I threw the items off to the side for the boys to deal with tomorrow and headed to my son's bed. Once again, I lance his finger. Once again, I get a large amount of blood. The strip sucks this time. I walk towards the stairs not even thinking about having to correct. Good thing...he was 3.2 (57). More choice words as I shuffle off to get some juice. I fill a glass, find a straw and do those stairs for a third time in less than five minutes. He is not keen on drinking. I finally get him to sip. He drinks it all except the last few drops. Those are sucked up into the straw and then fly all over his pillow. He is using my cream pillow cases and I have managed to get strawberry juice on them! I can't even blame him but I am choked. I clean them as best as I can and now I wait. Why are 15 minutes a lifetime when you are dead tired and simply want this day to end?


Yeah! 5.5 (99) and I am off to bed for two hours. Oh the fun! Oh the joys! Oh where is my DexCom Seven Plus????

Confessions of a Depressed D-Momma

This post was written earlier this year and understood by many.  Things have improved for the most part but diabetes and depression seem to go together far too often...

Confessions of a D-Momma

At the beginning of the year I posted about people living with diabetes and depression and/or burnout.  As parents, we ache for our children going through this each day and do our best to relieve some of their burden. Many parents go through a depression or period of mourning at diagnosis but I wonder how many feel that they may have developed depression in part because of diabetes moving into their homes?

When my son was diagnosed, it took me months before I sat and cried.  Initially I was so happy that he was alive that I didn't think beyond that.  As he grew stronger, my focus was on learning and the fear of "what if".  After months of testing and injecting, it hit me one night...I would never make him better. I would continue this routine until he would do it himself but he would not be cured. I sat alone in the dark and cried.

I moved on after that. I took control where I could because diabetes had left other parts of our lives so out of control. I found an amazing online support group.  I met some local people who became friends.  They understood my life and it made me feel less alone. I plowed through and worked on a variety of issues. I tackled the federal government and had them change the Disability Tax Credit, making it more fair for people with diabetes. I joined groups and committees. I advocated for change in a variety of areas. I organized diabetes walks, created a website and eventually began this blog.

Despite all of these great things and the encouragement of many, I always had a sense that I was not doing enough. I was inadequate. Change was slow.  Rewards were gifts to the heart.  Because most of what I did was volunteer, there was very little, if any, financial reward. Money is what makes the world go around and if you have no financial worth then what is your value? People would tell me that I should "get a life".  I should "get over it". I needed to "get a real job".
In my heart, I know my value. I know what I have done as a parent, a mother and an advocate are very important. These comments still haunt me however. They still make me wonder.  I know the good things that I have done and continue to do. I see my son's A1c when he is with me and I know that I am important to his health. I know the real value of that gift  When I begin to forget my worth, I often receive amazing emails and comments that truly light up my day. The value of these comments and the friendships I have made are well beyond a financial measure to me. 

And yet there are some days this knowledge is still not enough to see me through to the next day. The demons, the comments, the fears, the exhaustion--they are all there in the back of my head.  They lurk, telling me that I am not good enough--as a pancreas, as a parent, as a person.  The depression takes over. A black cloud hovers overhead.

Its a cloud that I cannot quite seem to easily escape. I look at myself and ask, what gives? I have a lot of blessings in my life. I have a lot to be thankful for. What is my problem?

I wish I knew. I have to fix it. I have seen many victories from many battles over the years--both personal and in the diabetes world. I should be happy with my successes. I should not be sad, depressed, blue, fearful or lack any self-worth. Perhaps its a shift that I need to make within me--to focus on the positive and push back the depression and feelings of inadequacy.   
Diabetes has taken over a lot of our lives. It has brought many changes and has brought me many blessings.  It has changed me. It has enhanced me.  It seems to have also brought a friend called depression but I won't let it win any more than I will let diabetes win.

Nightmare illness

As promised, here is a post that was originally written back in June of 2009....



It all started last night a little after 9pm. My son had been playing with his friends. He and a friend came in and grabbed a freezie. My son soon came back to me saying he felt a little ill. That was when it began. He ran for the toilet and promptly vomited enough for 10 people! He had it everywhere. I was washing the floors, the walls and every surface in between.


When he was done, I told him to test and check for ketones. His blood glucose level had been in range but something had to have caused this. Where was the Precision meter? We tore apart all of our diabetes drawers. I dug in cupboards. We pulled apart junk baskets. Finally I found more than just empty meter cases and my son was able to test for ketones. They were only trace. That was not our problem. I gave him gravol, his friend went home and my little boy headed for the couch.


It didn't take long before he was sound asleep on the couch. I quietly worked and hoped that he would be fine by the time I had to go and pick up his older brother from a teen dance. I heard a noise and looked to see if he was okay. He wasn't. He was on his back, hands over his mouth and vomiting once again but this time he was keeping it all in his body. I was terrified. I had to force him on his side and hold him there. He kept wanting to roll back and keep in the vomit. It was up his nose and all over himself. I held on to him and let him throw up all over the floor. It was easy to clean but he kept telling me that he could not move. I was more and more scared. Finally the vomiting stopped. I had him sit up. He was very disoriented.


I ran a tub for him and wondered if I would have to bathe him. He was fine by the time it was done. He cleaned the vomit from his body and his hair while I cleaned another room. He decided that the was starving when he was done. I gave him a cracker and more gravol. He went back to sleep on the couch.


When it was time to leave I tried to get him to get dressed. He was still pretty out of it. We put a blanket, pillow, bucket, and rags in the back of the car and prepared for our car trip. As I started the car, I could hear the back door open and he began to vomit again. I stayed there and waited for him to be done. I wanted to cry. Was this ever going to end? My son wanted to stay at home but I could not leave him alone by himself. I was terrified that he would throw up on his back again. I was also going to be awhile and was not leaving him alone.


We made the trip with all of the car windows open. He slept like a log and all seemed okay. We got home and he wanted to eat. I had said if he could make the trip without being sick then I would let him have a cracker. He tested and he was 3 (54). I gave him sugar water instead. I needed something that he wouldn't throw up and was pure sugar. It didn't help. He fell asleep but stayed low. I decided to take a chance and try glucose tablets. He ate them but he didn't go up. I set a temporary reduced basal on his pump. Still no upward movement. I finally suspended his pump. Still nothing. More glucose and finally a cracker. He had to go up eventually...and he did. When he reached 4 (72) I went and laid down for an hour. We were now at well after 3am. I set my alarm and checked him again. He had moved up to 5 (90). Back to bed I went with my alarm set for another 2 hours. My son was sleeping on the couch. I had propped him up so he could not sleep on his back.


About an hour later I heard him again. He was in the bathroom throwing up. He finished and came into my room to sleep. I got another gravol for him. I was hoping this would eventually start to work! He instantly fell back to sleep. I dozed. With each turn he made I was awake and certain he was throwing up again. He did vomit again at 6am. He had a bucket beside him but little left to vomit. I was exhausted. He slept like a log. His bg level had not gone over 10(180) all night. I could not believe it.


By 11:30am he was awake and looking for food. I gave him some toast and told him to see how that worked. He no longer was that lovely shade of green so I hoped for the best. He said he felt perfect. By 1pm he was ready to go over to his father's for the night. I called to check on him. He has been perfect all day. I am so glad for him but boy am I ever beat!

Thank you to our Doctor

Happy 4th of July to our US friends! 
This post was originally published in response to a question for Diabetes Blogfest  last year....



Dear Dr. vG;

It is day two of Diabetes Blogfest and a letter to you seemed appropriate.

We met over 11 years ago.  I was told that you were the best and when I saw you, well, I wondered.  My son was terribly ill and a man in a checkered shirt, bushy beard, and big winter boots was to be the one to save him? I left it in God's hands and we have never looked back.

You were very matter of fact when you met us.  You left me scared and shaken to the core when you told me that the next twelve hours would tell us if he lived or died, if he had heart problems or kidney failure.  You would teach me about diabetes and whatever else I needed to know after you saved my son's life.

I remember very little of you after that.  I know you were there. I know that our prayers were answered and you saved my son's life that night. You carefully balanced his insulin and fluids, bringing him back to us healthy and full of life. 

You met us again after he left intensive care.  I can still see you standing near his room door.  You told me that he could honeymoon for years.  You warned me of impotency at 20.  You gave me the facts never worrying that I could not handle them.  You told me that I had to learn things that were foreign to me.  I had to be able to handle my son going low before we could go home. You seemed to know my strength more than I did because I was sure I would never be able to handle it all.

Over the years you pushed me.  You guided me and then left me to fly or fall on my own.  You told your secretary to ignore my faxes for help because you knew that I could answer my own questions. I grumbled upon your return, you laughed and reminded me that I had done fine. When I decided to apply and fight for the Disability Tax Credit you told me I was crazy.  You said it could not be done but if I wanted to waste my time, you would not stop me.  When we were headed to court to further the fight, you were still standing beside us.  When we won, not just for my son but for the thousands of people living with diabetes in Canada, you laughed and complaied that I had given you more work that you didn't need.

As my son grew, you pushed me again.  You knew that diabetes care I could handle but you also knew how difficult it would be for me to let go of my children--especially one that had almost been taken from me.  You made my son take care of himself long before many thought he was ready.  You asked more of him than many others of his age.  I was scared. I balked but went along with it because it had worked with me.  Your reasoning was sound but I was terrified.

I am still scared today but I am grateful for the tools you gave us.  Last year, we moved away and had to leave your practice.  When my son was diagnosed, I had asked if you would ever leave us but I never imagined that life would put us on a path where we would have to leave your care. 

You shared stories of your family.  You shared your insights and offered us food for thought. You created a strong foundation for us to go forward on and I will forever be grateful.  We have stumbled.  We have not always agreed but you allowed us room to grow and had faith in us when we may not have had it in ourselves. 

Thank you for saving my son. Thank you for showing us how to stand.  Thank you for giving us the courage to fly.

Once again....Airports and Pumps

A review for those of us traveling...



In the news recently was a story about a 16 year old young girl who was returning from a conference.  She happened to have diabetes and was wearing an insulin pump.  She had a letter from her doctor stating that she could not go through the scanners but would require a body search.  TSA screeners in Salt Lake City felt that they knew better than this young lady or her doctor and required her to go through a full-body scanner.

She has since claimed that this act resulted in the malfunctioning of her $10,000 insulin pump.  She is not happy. Her parents are not happy and many in the diabetes community are left asking, "What are we supposed to do?" 

For me, we have done both the patdown and gone through a screener.  Until recently I have told the security personnel that my son is wearing an insulin pump and we would prefer he be patted down.  At one point they argued with me stating that as pumpers themselves, they constantly exposed themselves and their pumps to the scanner machines with absolutely no adverse effects. We decided to finally give it a try. Of course my son had some other item on his body that set off the alarm and still had to be pat down but his pump did not see any adverse damage. 

So the question remained, for those of us who will be traveling by air and having to go through airport security what do we do? According to an Animas statement released in response to the Salt Lake City incident (May 2012 Standby Statement)  "...we recommend that our patients avoid going through X-ray machines when traveling, as the machines may potentially damage the pump's software and therefore affect insulin delivery.  This includes the newest airport screening tool, Advanced Imaging Technology (AIT) or full body scanner."  They further advise pumpers to alert TSA employees that they are insulin pump users and should NOT undergo an X-ray machine.  Animas will also provide a letter to its customers that can be shared with airport personnel should they be questioned or asked to be scanned. If Animas pumpers have any further concerns, they can visit www.animas.com or call 877-767-7373.

I wondered why there was a problem, so I asked! I was curious if there were studies on how this decision was made. No studies could be found but it would appear that engineers feel that each time an electrical component goes through an x-ray machine, it fatigues some of the electrical components.  This made sense. If we get X-rays for our teeth, for the breathing issues in our lungs, after the skiing accident on our leg, and then on the six plane trips we took that year...well that's a lot of potential for fatigue!

 According to Medtronic, "You can continue to wear your insulin pump or continuous glucose monitor while going through common security systems such as an airport metal detector as it will not harm the device or trigger an alarm.  Do not send the devices through the X-ray machines.  You also need to remove your insulin pump and CGM (sensor and transmitter) while going through an airport body scanner or ask for a pat-down screening."   

I was still confused though...what is the difference between X-ray, full body scanners and metal detectors?  Google to the rescue! While I did not bother to get into the technical differences, we know that the X-ray machine is the thing that scans our purses, laptops and jackets.  How do we tell the difference between a metal detector and a body scanner? It turns out that a metal detector is the traditional screener that we have all come to love to hate.

The full body scanners are the new fangled gadgets that some airports have recently begun to implement. They look more like this...

and for some reason make me think of a woman getting ready for a mammogram!

What does all of this mean? The main message I received is to go with a pat down ideally but absolutely, 100% without a doubt do NOT put your pump on the belt with your laptop, purse or jacket to go through the X-ray machine. Do not put your pump or CGM through a body scanner but if you want to walk through a regular traditional metal scanner...well make sure that you don't have the pump clip still attached because you know that is going to set it off!

Obsessed...Me??

On this day in 2010 I wondered if it was okay to be obsessed...


Merriam-Webster's Dictionary defines "obsess" as to excessively preoccupy the mind. People have said that I obsess over my son's diabetes. I have jokingly gone along with it on occasion. I have also been shocked at times to realize how much it is a part of my day and my life.

A couple of times recently, I have had the opportunity to go to lunch with my oldest son while my child with diabetes is involved in other things.  As we sit at a table, I want to ask him to test.  After his meal arrives, I automatically figure out the carbs and then have to stop myself from telling him how much to bolus. Maybe that is a little "obsessed" or perhaps its just habit.  

For over ten years he has been with me most of the time. During most meals, I have had to remind him to wash his hands and to test his blood glucose level.  Even when he has not been with me, I have had the carbohydrates calculated in almost all of his meals done for him ahead of time. I don't think that wanting to ask someone else to test or calculating carbs is an obsession then. I think its just our way of life. 

Its not just meals that make me think about diabetes related stuff either.  I have been packing and unpacking as we adjust to a new home, new city and new way of life.  Things have been more than just a little stressful as the school year end was happening at the same time. I have been organizing diabetes walks, packing clothes, throwing out items stored for years, filling prescriptions, changing doctors and preparing myself and my son for his two week visit with his father. 

When all of the boxes were packed, the house was cleared, we had made our nine hour drive to our new home.  I had wonderful help in terms of my family to get things boxed up and shipped on. There was nothing left behind that was not meant to be.  Every piece of toilet paper was picked up. I was exhausted when we pulled away from our old house but I was confident that we had everything that we needed and that my son had all that he would need for his two weeks with is father.

Being exhausted and emotionally drained before a nine hour drive can only make your mind worse at the end of said drive. When we arrived here, my son and I grabbed the coolers and began to put things in the fridge and deep freeze.  Where was the insulin? I had about six vials of insulin.  Where was it? I took it out of the fridge. I put it on the counter. There was nothing left on the counter.  I had to have it.  What did I do with it? It was driving me crazy.  How could I have misplaced something so incredibly important?

For those who don't understand the reaction is obvious...why are you obsessing? The child is not even here and won't be for two weeks! He has his insulin and you do not need any.  You can buy more when you need it.  What is your problem? Why can't you let this go? Why is it so important to you now when you should be thinking about sleep?

Those questions did run through my head.  I have to have our prescriptions moved over before he gets home.  There is some insulin here even if I don't get it done in the next two weeks exactly.  Am I obsessed? The short answer to me at that time was YES! How can I not be? I have lived this life for the past ten and a half years.  I have seen how vital insulin is.  Yes, it may be about my child's life but this is my life as well. Whether he is here or not, diabetes has become something that I live and breathe.

Is that a good thing or a bad thing? Some may say its a bad thing and that I need to loosen up.  I think that it is okay.  I have seen too many deaths from this disease. How can anyway say that being concerned, being on top of things and worrying about your child's complete health is a bad thing? Oh and for the record...I still have about 50 boxes to go through (or so it feels like) and I still have no clue as to where the extra insulin is...or my cheese for that matter!

Diabetes still isn't sexy!

Happy Canada to all!! Here is one of my favorite posts inspired by a great parent of a child with diabetes....

October is Breast Cancer Awareness month. Everyone knows about breast cancer. If you are a woman like me, you fear it.  Everyone knows pink.  Everyone knows about losing a breast, chemotherapy and all of the other nasty things that come along with that horrible word--cancer.

November is Diabetes Awareness month. Very few know about diabetes.  Most people think it happens to someone else.  They don't think its serious.  They are not sure if the awareness color is blue or grey...and aren't really that concerned.  They know about blindness and amputation but that is not a given so its really not that big of a deal.

Its the ignorance of the disease that is frustrating.  The "its no big deal." and "You worry too much." comments that kill you.  I recently had a teacher ask me if we could arrange my child's highs and lows around an exam schedule.  She was well meaning and very sincere.  She thought that perhaps with warning of when a test was coming, that we could make sure that my son did not go high or low during that time. She was told by myself and one of her colleagues that it didn't work that way. 

It is hard to make people "see" what those of us who live with diabetes in our lives 24/7 "see" each day.  They don't understand why we test during the night and deprive ourselves of much needed rest.  They haven't had a friend not wake up from diabetes.  They don't understand how quickly a low comes on even after you have recently tested.  They haven't seen a child pass out in the middle of a playground because they went low and didn't know how to tell you.  They don't understand why we are so fearful of ketones.  They haven't seen the how quickly they attack our loved ones leaving them weak, frail, and clinging to life and how long it takes to get rid of them. 

To most people, diabetes is that disease where you can't have sugar (I mean its called "the sugar" isn't it?).  Its that disease that Grandma had but she liked to sneak cookies so its no wonder she went blind. Its not like cancer or a serious disease. No one dies from diabetes.  Parents who test, hover, and want you learn about that thing called Glucagon are just those overprotective people who need to learn how to let their kids just be kids.

I don't know how to get the majority to understand.  As someone recently said, diabetes is not sexy.  It is not a disease about pretty pink ribbons and cleavage.  Its a disease that is grey and about blood.  There is nothing attractive about diabetes.  You can't see a pancreas.  Don't get me wrong. I am very attached to my breasts and would love a day when we don't have to worry about breast cancer but after years of being my son's pancreas? Well, it may not be a sexy organ and it may not have any appeal to the general public but I guarantee it has my utmost respect and I would not want to lose it either.

So what is the answer? How do get more people to understand? We keep going as we are and then some.  We advocate. We educate. We communicate.  We teach those who want to learn.  We tolerate some ignorance and try to help them to understand what this disease is really about. Its a long road. Its frustrating at times but with each person who learns the reality? Well its another person who wants a cure almost as much as those of us who live with it.
October is Breast Cancer Awareness month. Everyone knows about breast cancer. If you are a woman like me, you fear it.  Everyone knows pink.  Everyone knows about losing a breast, chemotherapy and all of the other nasty things that come along with that horrible word--cancer.

November is Diabetes Awareness month. Very few know about diabetes.  Most people think it happens to someone else.  They don't think its serious.  They are not sure if the awareness color is blue or grey...and aren't really that concerned.  They know about blindness and amputation but that is not a given so its really not that big of a deal.

Its the ignorance of the disease that is frustrating.  The "its no big deal." and "You worry too much." comments that kill you.  I recently had a teacher ask me if we could arrange my child's highs and lows around an exam schedule.  She was well meaning and very sincere.  She thought that perhaps with warning of when a test was coming, that we could make sure that my son did not go high or low during that time. She was told by myself and one of her colleagues that it didn't work that way. 

It is hard to make people "see" what those of us who live with diabetes in our lives 24/7 "see" each day.  They don't understand why we test during the night and deprive ourselves of much needed rest.  They haven't had a friend not wake up from diabetes.  They don't understand how quickly a low comes on even after you have recently tested.  They haven't seen a child pass out in the middle of a playground because they went low and didn't know how to tell you.  They don't understand why we are so fearful of ketones.  They haven't seen the how quickly they attack our loved ones leaving them weak, frail, and clinging to life and how long it takes to get rid of them. 

To most people, diabetes is that disease where you can't have sugar (I mean its called "the sugar" isn't it?).  Its that disease that Grandma had but she liked to sneak cookies so its no wonder she went blind. Its not like cancer or a serious disease. No one dies from diabetes.  Parents who test, hover, and want you learn about that thing called Glucagon are just those overprotective people who need to learn how to let their kids just be kids.

I don't know how to get the majority to understand.  As someone recently said, diabetes is not sexy.  It is not a disease about pretty pink ribbons and cleavage.  Its a disease that is grey and about blood.  There is nothing attractive about diabetes.  You can't see a pancreas.  Don't get me wrong. I am very attached to my breasts and would love a day when we don't have to worry about breast cancer but after years of being my son's pancreas? Well, it may not be a sexy organ and it may not have any appeal to the general public but I guarantee it has my utmost respect and I would not want to lose it either.

So what is the answer? How do get more people to understand? We keep going as we are and then some.  We advocate. We educate. We communicate.  We teach those who want to learn.  We tolerate some ignorance and try to help them to understand what this disease is really about. Its a long road. Its frustrating at times but with each person who learns the reality? Well its another person who wants a cure almost as much as those of us who live with it.