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!