Saturday, July 31, 2010

The Diabetes Coincidences just keep coming!

I posted a few days ago about going to the bank and the pharmacy.  In both places I ended up finding diabetes connections through conversations. I found it interesting as I said, but last night really has my mind wondering. You see, I am one of those people that believe that everything happens for a reason and that many things that happen are signs for you to pay attention to. I am definitely thinking that these coincidences mean something but I haven't come up with the what yet.

Okay, so what the heck has got me so existential today? It all began with the decision that my fiance and I  desperately needed a night out.  Not just a night to visit with friends but a night on the town.  Since my move, our lives have been pretty full with unpacking, renovating, rearranging and trying to get settled.  At the end of the day we have simply died, unless we had company and then we pretended to be alive until it was polite to yawn.

Last night, after a day of working at this and that, we showered up, dudded up, and headed out to an outdoor festival.  I had heard of this event and always thought it would be interesting to attend but never had. As we drove downtown to the venue, the rain began. There had been light showers all evening but as we got closer the skies opened up and we began to doubt that this was for us.  We aren't twenty anymore and standing outside in the rain to watch a concert or darting between the drops to check out the next bar was just not our thing.

Fate had a different plan for us and the rain stopped for a bit.  We found a parking spot and walked up to the street were the festival was held.  As we were standing waiting for tickets, a man approached me.  He was respectable looking enough but out of the blue he asked me "Are you going to see April Wine?".  I looked at him a little confused. I honestly had no idea what we were going to see but I did not think that April Wine was part of our evening.  I said I didn't know and quickly moved on.

The rain came off and on.  We ran into friends on the street and soon headed into a club to watch the festivities from their balcony.  It was close to a large outdoor stage and there were big screens for people to view the stage activity from afar. As we stood wondering who was going to play next, there were rumblings around us that April Wine was playing tonight. We wondered if they were playing somewhere else but soon a band hit the stage and we knew that we were in fact going to be listening to April Wine that evening. 

I was pleasantly surprised and we enjoyed our view from above for quite a few songs.  After a bit we headed back down to the street and close to where some friends were standing.  Things were too crowded and loud to get close and talk so we simply enjoyed the music. That is when things became a little more my new diabetes kind of way.

We had swayed to songs like "Tonight is a Wonderful Time to Fall in Love", "You Could have been a Lady" and many more.  There was a pause and the gentleman who appeared to be the lead singer, Myles Goodwyn, stated that they believe strongly in and support one charity.  They wanted people to be aware of it and to help them support it as well. "You see" he said, "my son was diagnosed at 8 years old with Type 1 Diabetes and we support and fundraise for the Juvenile Diabetes Research Foundation."

My jaw dropped.  I could not believe this. I know that "famous" people have kids with diabetes or have diabetes themselves but this man was speaking my language.  He spoke of the fear.  He spoke of the admiration for his son and his wish to take this disease from him. He spoke of the desire for a cure.  Remember that this was the very same day I had read about 5-28% of people with Type 1 diabetes dying from Dead in Bed--I was very emotional.  He had wrote a song for his son about his bravery.  I have tried to find it but the noise of the crowds and the outdoor sound system did not allow me to hear enough of the lyrics or what he said to find the song. A little research on their website suggests that this young boy was diagnosed only a few years ago. 

I walked away from the concert with a new love for this band.  I have always liked April Wine (my oldest son loves them and was terribly jealous to have found out that we saw them) but now we had a connection.  We both had a son fighting this terrible disease.  We both knew what it was like to fear for their health--to fear for their lives. He was doing what he could and hopefully I will be able to do a lot more yet as well.

So that is my latest diabetes coincidence in a matter of weeks. I wonder what the next one will be and when will I figure out exactly what they all mean beyond the fact that I just can't escape this disease!

Friday, July 30, 2010

Now I know why I worry

As usual, I was going through articles this morning looking for new research results and other  new and exciting things in the wonderful world of diabetes.  For some reason lately, there have been quite a few articles on Dead in Bed Syndrom.  I think its because I am trying to get my son to begin to wake up to alarms, lows, and work a little more on his own care. Okay, maybe its not personal and its just coincidence but it did make me wonder.

Today's article did more than just make me wonder, it made my heart stop.  I remember way back when my son was first diagnosed. I read everything that the hospital gave me and then read it again. In the literature there was a brief pamphlet on Dead in Bed.  They suggested that a person with diabetes could go low in their sleep and never wake up.  My first thought was...I will never, ever sleep through the night again and I have lived by that for over ten years.

I automatically wake up now.  There are no 3 am alarms set for me.  I wake to use the washroom. I wake to strange sounds. I wake to odd dreams.  All of these things are reasons for me to stop in my child's room and verify that his blood glucose reading is okay.  On more than one occasion it hasn't been and I have thanked the moon, the stars, and anyone who got me up that night to catch the problem before it got a lot worse.

When I read the article this morning I realized that people who think I am crazy for getting up so often have no idea and that I am right.  Many who question my actions do so out of concern.  The physical toll it has taken on my body is evident by the medications that greet me at breakfast each day.  Its because of this and the fact that my chid is not with me 24/7 anymore that I have really worked this summer to get him to wake up to an alarm and test himself. I still wake up and check his meter or test him again but he is managing to wake up at least 50% of the time and test.  This is huge for a child who can sleep through a fire alarm!

So what was the big scare factor in the article? What validated me and sent me back to testing like a maniac? A MedLinx article that stated "The incidence of “dead in bed” syndrome is not known but studies suggest figures of between 4.7 and 27.3% of all unexplained deaths in type 1 DM."  Five to TWENTY EIGHT percent????  That is beyond unacceptable.  That is downright terrifying!

Its funny, we have worked so hard to get out kids pumps (and in some places the fight still continues) and now it looks like we will need to bring this information forward to help us ensure that we can at least have the help found in CGM technology.  None of it is a cure but we want our loved ones to live long enough to see a cure. 

Monday, July 26, 2010

A Tribute to an amazing amazing family

Its not often that you really think of a school as a family but in so many ways, my son's school was just that--part of our family. It all started back in 1998.  My oldest son's aunt desperately wanted me to enroll him in a French as a first language school.  I was a little skeptical to say the least. I am as English as they come.  My French is limited to high school and knowing how to conjugate the verb etre. I wished I had learned more but my own insecurities kept me from going any further. 

I called up the school and was worried because rumors were abound that the school would be closing. My call was answered by the principal and my concerns were quickly put to rest.  My son completed their preschool program and as we headed into kindergarten, I again had questions. I am an English speaking girl as I said.  My children's father comes from a French background as did most of the community we were living in but what if my kids decided that they wanted to go to English post-secondary schools? Would they be able to function? Again my concerns were alleviated and I was shown that the "French" students often performed better than their English counterparts in English programming. 

I began to feel that I had opened doors for my children and not closed them and so I began to relax.  I got to know more of the staff through a variety of activities and soon was involved with helping out in a variety of ways. Just as I was relaxing, a blow hit our family--my youngest son was diagnosed with Type 1 diabetes and given twelve hours to live.  The school had been worried about him earlier.  He had looked pale when we had gone to various events throughout the late fall and early winter.  They were there with support and kind words when we returned from the hospital with our new pal "diabetes" in tow. 

As my youngest son grew, he too went to this school.  They worked to ensure that he fit in.  They supported me as we fought for accommodations and help to make the lives of the staff and my son easier and safer.  When my youngest was in kindergarten, we asked some of the staff to support us in a walk we were doing as a family for the Canadian Diabetes Association.  They generously opened their wallets to us. The next year however things were very different. This time they refused to support us.  They wanted to do their own walk! Would I arrange it? 

Well as you know, the Ecole Notre Du Cap Diabetes Walk became an annual event.  I quickly labelled them "the little school with the big heart".  A student body that was never more than 50 students each year raised well over $1000.  By 2010, with the $2214 they had raised in June, this little school with the incredible heart has raised close to $20,000.  The thought of their generosity and how it sustained year after year despite the changing of students and some staff still brings tears to my eyes.   

This year I once again watched students show up on walk day donning t-shirts that they had been given years before.  They were showing their support. It wasn't about raising enough to get a t-shirt or whatever other trinkets companies like Medtronic and Stutt's Pharmacy provided.  It was walking for my son, for their grandparent, for a loved one, for people with diabetes in their area.  I was honored to roll their coins and total their pledge sheets. I was proud to hand them their prizes and their "Thank you" certificates from the Diabetes Hope Foundation. It was my pleasure to send on the cheque with this year's donation. 

This was a walk done by friends. No--it was a walk done by family.  As the school year came to a close, so did our time at Ecole Notre Dame du Cap.  We moved out of the community that my children had called home all of their lives. We are lucky to still be in an area where my son can continue in the same French as a first language program but leaving our family behind has been hard.  We will see them again as they come to our new area and we return to theirs.  No matter what the distance between us, they will always be with us.  As I have read many times and have learned over the past few months more and more, some friends come into your life for a little while and fill a purpose but some friends come into your life and forever leave a print on your heart.  Ecole Notre Dame du Cap, its staff and its students have definitely left a print on our heart. They have shown us generosity, kindness, and love while providing my children with a wonderful and well rounded education. 


Tuesday, July 20, 2010

Interesting Day

Yesterday was finally supposed to be my blog about the diabetes walk that my son's school did last changed that. First, I am still in the process of trying to get a new office set up, get my computer running, etc and basically am still pretty unorganized so I never had the chance to sit down and write yesterday.  Second was the fact that my day was so strange that I had to change the topic and save the walk for a later post.

What was so special about yesterday? Well nothing to start with.  My son was his usual self, sleeping through alarms, and driving me insane. I had decided that it was time to get the diabetes walk stuff all sorted out though. I wanted the paperwork done and shipped off as well as the money in the bank so that they knew I didn't run off with the proceeds!

I sat in my new office at my cool make-shift desk and spread all of the pledge sheets and money out around me. I had to dig to find paper, fight with my printer to get things to print but soon enough I had all of the details dealt with and packaged up.  My son and I grabbed our bags full of goodies--which included a large sum of cash and coins, and headed out to use our new neighbourhood. 

The first stop was the new pharmacy to get our prescriptions moved over and filled.  After that I was going to the bank to rid us of the weight of so much coin.  Don't get me wrong, I love, love, love coin that is going to the Diabetes Hope Foundation and will gladly roll and carry it any time! I stood in line at the bank of what could become my new "home branch" and waited to deposit the money so that the cheque I had just mailed to the charity would not bounce.  The teller (or customer service person as I think they are called now) called me forward and apologized for making me wait with all of that in my arms.  I thought that was pretty nice of her and said it was no big deal (I really could use to develop some muscles anyway).

The woman began organizing the cash, coin and loose coins. I had given her a sheet with my totals.  As she looked everything over, out of the blue she asked if this was money collected from a walk? I said that yes it was.  She then asked if I knew a specific family because they do a walk each year in memory of their daughter who died eight years ago.  I said that I was new to the area and was not familiar with the name.  I assumed that the daughter had died of cancer or some other disease but was shocked when the woman continued to say that yes, the girl had Juvenile Diabetes and had a "reaction" that had caused her death.  I told her that my son also had Type 1 diabetes and the walk was in aid of the Diabetes Hope Foundation

She then continued to tell me that two of her relatives had Type 1.  Her great niece and great nephew (who were brother and sister) were both diagnosed.  One child was diagnosed when they were eight years old.  When the second child turned eight, well diabetes came to visit again and the family was twice blessed?

I left the bank slightly blown away.  I was saddened that yet another young person had lost their life to this horrible disease.  It left me wishing more people would understand why I worry so much about my own son and so many others.  They do not see and hear the stories of death that I do.  They think I am paranoid and over-protective.  I still search for ways to one day make them understand so that perhaps they will watch our loved ones with diabetes a little more carefully and will be that much more willing to help us work towards a cure.

My day did not end at the bank however. I still had more running around to do.  My son and I picked up some things to put on his new bedroom walls.  We worked out design strategies and hit the grocery store.  After all of that we headed back to the pharmacy that  was to have our prescriptions all ready.  As I stood in line, a young man in his twenties was in front of me.  He was picking up syringes and as his conversation progressed, they were discussing the transfer of his file which included his insulin, test strips, needles, and more.  I was surprised to run into another person with diabetes moving pharmacies at the exact same time as we were!

I know its the small things but diabetes seemed to be in every facet of my life yesterday from phone calls to simply standing in line at a store.  Amazing!

Thursday, July 15, 2010

Diabetes, its always there it seems

My son is still with his father for a few more days but diabetes hangs around even when he doesn't.  I do not move without my phone. There may be a text or he may have a problem that requires Mom's help.  When I open my bag to put in my phone, I am greeted by two lancing devices, a roll or two of glucose tablets, a bottle of test strips and of course some hand wash!

It amazes me to see how much "stuff" I carry around each day. On the upside, the other day I dropped an ice cube on my foot and cut a toe (who cuts their foot with an ice cube?? Me!).  Thanks to diabetes supplies at every turn, I was able to grab a meter and establish that I was 4.9 (88).  No diabetes that day!

Despite not having to constantly say "test", "bolus",  "what was that alarm for?", and "did you do that site change yet?" I am missing it all. I guess because it is a part of my son and he is the one that I am missing. Don't get me wrong. I do say a lot of those things via phone calls and text messages but its not quite the same as seeing the pump in front of me and being able to grab a meter and check it.

Recently someone said in passing that my son had been away from me and all was fine. I had been worried for nothing. I know that the comment had been made to make me feel better and more relaxed about how well he is learning to take care of himself. I am proud that nothing major happened but I equally know that "bad" in this case can quickly equate to death.

It frustrates me that so many people, including some living with the disease, do not take diabetes seriously.  They do not think about how quickly DKA can escalate to the point of dehydration and the shutting down of organs.  They do not realize that those prolonged highs are destroying small blood vessels and leading to early blindness and kidney disease.  They do not see the problem now and assume that you are worrying unnecessarily.  Face it, your child can walk down the street and be hit by a car.  You can't protect them from everything so why obsess over this disease that seems to be no big deal?

It is true that we cannot protect our children from every danger that is out there but when you live with a chronic illness like diabetes, well the worries and dangers are increased. How do we get people to understand this? How do you help the teacher at school understand? How do you get the boss at work to know that you are not "milking" this? How do we get the general public to understand and support us when often loved ones and people in our close circle don't truly understand what you are going on about.

You can speak again and again about that lifeless little boy in your arms.  You can speak again and again about the death of that incredible man who went low at night and did not live to see any of his children graduate.  You can speak again and again about the teen who thought he would take his insulin later and did not live that long. The list goes on but somehow the list is still not long enough or powerful enough.

Diabetes does consume more of my day than the average person.  I do educate myself more.  I do involve myself in the diabetes community more than some. I work hard to keep my son as healthy as possible.  Teaching him to be a responsible person with diabetes is my hardest task.  Somewhere in there however, I will continue to work to find a way to teach others.  They may not fully understand.  I pray that they never live through the experiences that we have had but hopefully they will begin to get a bit of it.  They will begin to know that we worry because diabetes makes it so...or maybe they will just find a cure and we can go back to worry about them crossing the street instead.

Friday, July 9, 2010

CWD Nostalgia

The sun is shining this morning and despite the cloud cover the temperature has already reached above 20C (76F) and its not even 8am.  The house is quiet.  I am letting the males of the household get some much deserved rest after working hard all week and the dogs? Well they are flaked out on the deck enjoying the light breeze that Mother Nature is providing them so far.

The chaos of merging two homes into our one new home is slowly fading although I still can't remember where I have decided to place many of our things but it will come with time.  Right now I am choosing to simply enjoy the silence and the peace.  My office is currently my laptop on the kitchen table.  Far from ideal but the view of the backyard makes it a sacrifice I can handle until my fiance and I get my real space ready.

As I sat down and booted up this morning, I of course checked out the Facebook world to see what was happening.  The bulk of my Facebook friends tend to be people with diabetes or families of someone with diabetes.  Diabetes is obviously a big part of my life and I have met many people and made some incredible friends because of this horrible disease.

Today I was treated to many great new pictures. I love getting the chance to "see" so many family and friends and glimpse into their lives as I give them the chance to glimpse into the chaos and wonder we call our life. This morning brought on much nostalgia and excitement. For those of you who don't know, has just finished up another amazing conference for families with diabetes in Orlando.  It was a wonderful idea that came together out of friends wanting to vacation together and now...well its an experience that I would recommend to anyone. I am hoping to go back one day soon but until then I love seeing all of my amazing friends in these great pictures and remember back to when we joined them.

Jeff Hitchcock and Michelle Rago are amazing with a camera.  They capture the very essence of people.  They capture innocence, fun and the amazing friendships that this community has created. I have said it time and time again, I truly don't know what I would have done for all of these years without so many of these people.  I am blessed to have found a group of friends who have been there for the diabetes crisis's, for the days when I just don't want to do this any more, and for the celebrations that only people with diabetes can understand.  They have encouraged me.  We have laughed together and we have shared tears.  It is amazing what the Internet and some amazing people coming together can create.

Now as I said, I wistfully look back at the Florida Conference and long to sit beside the lake with friends like Stacey, Lauren, Michelle, Joanne, Rita, Julia, and more but once again I also have another CWD event to begin to get excited about.  I have been very lucky to have been a part of the Canadian CWD conferences since their inception.  I get to go and hang out with some wonderful friends.  I reconnect with my rock, Laura and so many more. Through these conferences, I have also been able to put faces to some of my fabulous Canadian friends. I look forward to seeing so many of them again and watching their children grow. 

This year will be a shock for my Canadian friends because my children will actually be with me! I know, who would go to a CWD conference and leave their kids behind? Me! The first year they had already been to FFL in Florida and spent time with their father instead.  The next time was during school so they stayed behind once again but this year? Well, its in Vancouver which is where I am from so I am booking flights, packing up the entire family, doing some visiting with one family before we all get together to enjoy learning and fun with our other family!

Its amazing how people who are spread so far away can become so important to your life. I love gatherings like these as well as the small, more informal gatherings we have been a part of.  I look forward to each time I get to get together with my diabetes family and just hang out, be ourselves and know that we all "get it".  To know that we are all fighting the same fight.

See you all soon!

Wednesday, July 7, 2010

They are stalking me

Its been a week but I think I am done the bulk of the unpacking and junking.  Trying to keep an office in order, make that two offices, and find space for everything in a home that already has everything has been a challenge but we are winning.

Today I finally found my way to Liam's bed.  The room is not as complete as I would like.  There are many added touches to be made over the summer that will make it his.  All of the supplies have found a new home...and my heavens he does have a lot of supplies! I found all sorts of meter cases and lancets (although not all had meters to go with them).

The most amazing thing for me to unpack was his old toys.  My son has reached an age where he is no longer as into his Lego, Connects or other "kids' stuff".  He likes his video games, quad and a variety of other more mature "teen" things now.  He decided to bring his kids toys with him so that he could sell them.  We had a huge tote of Lego and another filled with Connects.  Yesterday I began going through things and putting the toys in bags to sell in a garage sale at a later date.  As I grabbed handfuls of Lego I found handfuls of test strips.  I had already cleaned out this box! How did they get back there? I grabbed another handful...this time it was a dead insulin cartridge. Later it was a carb count listing from a school lunch! You can see you my afternoon progressed. 

I persevered and left a pile off to the side of garbage and wayward items.  Imagine my shock however when in that wayward pile was a Medic Alert bracelet belonging to my son who happens to be about 900km away?? I hope he is wearing something but I guess it will soon be time to break down and by him a good necklace to wear before school...or more travel.

The joys of teen boys!

Monday, July 5, 2010

And the unpacking continues

The unpacking continues but at least I have now found many of the missing items. The insulin was of course in that box that I kept walking by but was sure it was too big to hold anything like insulin and the other perishables I was missing.  The jewelry that had been carefully put in a safe spot so I would be able to easily fill any orders that came in as I was unpacking was also found in the safe spot after days of searching boxes and remaking many items.

Thank you Bernard for reminding me how stressful a move can be! I have not made a move of this distance in a very long time...over sixteen years to be exact.  I have not made such a huge move with children.  I have never made such a huge move with a child with a chronic illness before. 

My son is currently spending some time with his father so I have time to unpack his stuff and try to get things in place for him when he comes home.  I had ideally planned to have his room just perfect when he arrived. It would have the skidoo theme that he talked about. The walls would have a few decals on them.  The curtains would show the Arctic Cat logo.  His bed would be black and green.  As the days go by and I am still struggling to merge two homes, I will now be happy if he comes home and can safely navigate his way to his bed!

Today I finally tackled emptying some of his boxes and putting away a few things.  His idea of packing and mine were very different so unpacking his stuff...well its a challenge but I am winning--I hope!  We had decided that all diabetes supplies would now be kept in his room. Over the years they have been kept in the kitchen, in my room, in the hall, and now I had decided to fill up one of the drawers in his dresser. Another great theory that is not exactly working in practice!

I brought up the cart that had held his diabetes supplies up from the basement (its the current holding place for all of our stuff both to stay and to be donated).  As I was wheeling the cart down the hall to his room, I was struck by how similar I was to a hospital orderly wheeling a cart down the hall on any patient ward. That saddened me.  I opened up the drawer that I had planned to fill and found that infusion sets and cartridges were already taking up all of the available space.  There was only one choice. I had to put the cart in his closet.  We were still going to have this physical reminder of diabetes lurking in his closet.  I wanted to cry.  I know its silly. I know its just me.  I should be used to all of this by now. I should be thankful.  I know of far too many families with multiple members who have diabetes.  Their supply closets must be huge and I am sure it doesn't reduce them to tears.

Adjusting, settling, and finding places for everything is difficult. Many things need to be let go of to make room for new things.  Sadly we could not let go of diabetes. I wanted it to take a vacation but it is still here with us. Its reminder hides in the closet but its still here.

Friday, July 2, 2010 it a bad thing?

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!