What I have learned

Its that time of year again. I begin to get reflective leading up to our di-anniversary on the 17th of March.  As February winds down and we look forward to March storming in, I am already thinking back to what I have learned over the past 11 years. This time 11 years ago, I knew nothing about diabetes and now its part of most of our life.  We educate many around us and those who care find themselves seeing insulin pumps and finding test strips where they never knew they existed before. I thought today would be a good day to take time and reflect on some of the things I have learned about diabetes over the years....

Its all my fault.  My son has diabetes because I didn't breast feed him long enough.  His brother doesn't have diabetes and I fed him for at least four months longer. I did this to him. Its all my fault for putting him on soy formula when I did.

I also gave him too many sweets as a child.  Yes, the child who prefers cantaloupe to oatmeal cookies and was once caught stealing strawberries because they were "so cute", was fed too many chocolate bars as a baby and still secretly (so secretly in fact that neither he nor I know it) hordes sweets and treats at every opportunity.  Its true. If you look in his room you will find a pile of candy on his dresser--uneaten and from Christmas but its there!

I also have learned that my son was a couch potato as a toddler. Yes, during the first two years of his life he spent far too much time watching "Dragon Tales" on TV.  That 20 minutes per day that spend bonding with Zack and Wheezie brought the dia-beast to our door.  The other twelve plus hours that he spent chasing his older brother and climbing everything he could see was not important.  It was the fact that he could sit and watch Clifford play with his dog pals or enjoy Zack and Wheezie helping their friends that led to the inevitable diagnosis of diabetes.

I have learned that my son has diabetes "really bad" because he uses an insulin pump.  I agree.  This "diabetes" thing is very bad. It has had me up at 2 and 3 in the morning for eleven years.  It scares me to death when I have to up the amounts of insulin he gets.  It makes me nervous when he is alone or off without me because I am not sure that everyone will understand what needs to be done.  Yep, this diabetes thing is really bad and the pump, giving him life-sustaining insulin every minute, is very much a physical reminder of the disease that we live with.

Luckily he got it so young because now he can outgrow it. Well if he can't outgrow it at least he doesn't know any different.  So true! Diabetes has left him unable to see the rest of his family and friends who don't test, who don't carry around an external source of insulin and who don't have to carry a pocket full of supplies everywhere they go.  Thank heavens for small blessings.

Yes, I have learned a lot about diabetes in the past 11 years.  Once upon a time, I knew that there were two kinds--one that Grandma could get and one that people used insulin for.  I knew that those insulin people had to be careful and could end up in a coma if they were not given a source of sugar quickly.  I didn't know much about how you got it. I didn't know anything about how you lived with it.  I have learned though...boy have I learned!

And then there were two...

The past forty-eight hours have been surreal in our house.  If you aren't a pet person, this post will mean little to you. If you are, well you will get it.

It all started two days ago, our oldest dog suddenly went from playful puppy, jumping through the snow drifts to "moving is overrated at the moment".  She had to think about every step and we knew that a trip to the vet was the only answer.

First thing yesterday morning my son sat at the table and said matter of factly, "I am going to school and I guess Nana is going to the vet."  She had come in from outside and had fallen once inside the doorway.  I was one step ahead of my son and had the vet's phone number ready to call at 8:30am when they opened.  I headed to the shower so I would be ready whenever they could fit her in.

The animal clinic was great and they got us in very quickly.  Our dog had a strong heart beat but her blood pressure was low.  A full blood panel revealed a bg level of 20mmol (360mgdl).  She must have diabetes! Okay, she was going to have insulin but they would work to bring up her blood pressure, hydrate her and then I could learn about injecting our pup twice a day.  I laughed because her owner had diabetes.  What were the odds? With that, I left my dog feeling relieved and planned to return just after lunch to pick her up.

By lunch she had passed away. She was our little diva dog who had a face that everyone loved and she knew it.  She was the little queen who felt that the other dogs were beneath her and who lived to have her owner carry her in his arms and take her everywhere.  She was gone that fast!  We were in shock and headed to school to pick up my son and tell him the news. He had left his lunch at home that day and I almost wondered if he somehow knew what could happen.  I suppose more likely he was just distracted by her condition, worry and a bus that arrived too early. 

I went into the school and as we walked to his locker to get his stuff, I told him what had happened.  He held things together pretty well until we got into the truck.  The tears began to flow and my heart continued to break.  She was his best friend.  They had been together for almost nine years.  She was his baby and now she was gone.  I worried about his bg levels.  I expected highs like no others. He had lost family members before but this was his "Nana".  He had babied her since she was a pup.  She was named weeks before he got to see her. She was his little girl.  She was spoiled and he loved her with all of his heart.

I had to stop at the vet's to sort out details.  He decided to go in and say his good-bye's.  We cried. We held each other and it killed me to see him in such pain. We went home and I continued my mother hovering from a distance.  We all were lost without the dog in the house.  We have two other dogs and even they sensed something was wrong.  Where was Nana? They stayed by her bed and waited for her. I stayed near my son waiting to see what he would do.

Somehow we got through the day, exhausted, sad, and cried out for the moment.  I sat down at the kitchen table with my son to go over his math.  He has a math test coming up and needed to study.  He made a few silly mistakes and when I said something he replied, "Hey, I'm stressed here. My dog just died."

Point taken and he was right but I wondered how long he planned to use that card and I asked him.

"Until I die."
"You mean for the next 40 years, anything that you do wrong will be because you are stressed because your dog died when you were 12?"
"Forty years??? You think I am going to die when I am 53? Are you crazy? And I am 13 not 12."

Oops.  Well I screwed that one up on a number of levels didn't I? Thankfully we were both laughing so all was okay and I quickly recovered. "Okay so you die in another 80 years and you are still going to blame things on the death of Nana?"

"No, by then Shweems will have died a year or two before and I will say its because of her death." He always has a plan.  He had decided that one of our younger dogs will have to live until he is between 60 and 80.  Despite the fact that she is a poor substitute, in his mind, for his dog Nana, she has her own merit and she must not get sick or die period--end of discussion.

"So how have your blood glucose levels been today?"
"I haven't needed to correct all day so I guess they are fine.  Why?"
"Well stress can cause your blood glucose levels to go up."
"What stress?"
"You know that stress you just mentioned because your dog just died?!?"
"Oh that! Well that's not really stress. I mean I'm not stressed, I'm de-pressed"
"Gotcha"

I can't say that Nana ever woke me up because my son was low. I can't say that she defended him from the evils of the world but she was his companion and confidante.  She was always there for him.  She was stubborn and would only come when she felt she should.  She loved playing in the snow despite how much I hated all of the snowballs in her fur.  She could shake a paw and whisper.  She could look at you with those beautiful brown eyes and try to make you forget anything else. She may have only been a dog to the rest of the world, but to us...well she was a huge part of our world. RIP our sweet Nana dog (October 31, 2002-February 22, 2011)

Do Not Disturb

Leave me alone. I am not awake.
Yes you are.
No, I am sleeping. Its too early to be awake.
You are awake and you know what you should be doing.
No, I am not awake.  I am merely rolling over.
You know that you are awake for a reason.
No, I am awake to get a little more cuddly in this warm bed.
You know that you have to get up.
He tested only a few hours ago. I should be able to sleep a little longer.
But you woke up.  You know that you wake up for a reason.
Yeah, its called the need to use the washroom but I am good right now.  Sleep sounds perfect.
You can't really fall back to sleep.
Watch me.  What's the worst that can happen? Don't I deserve a night of real sleep?
Do you really want the answer to that one?
Ugh! Okay, I am getting out of bed. See my feet hitting the floor?  See me stumbling out of my room and into my son's?  See me testing his hidden finger?---CRAP!I told you.

Once again that little "thing" that wakes me up in the middle of the night was dead on. My son's blood glucose level was 3.3(60).  Time to dig out the juice and my book.  Let's hope I don't wake up too much before I get to go back to sleep.

Thankfully he came up quickly from this low but of course my mind was "on" by the time I hit the pillow again and sleep was far away. Diabetes does not like me to sleep. It wants me to look tired and haggard.  That is not the truly scary part though (although many who see me may think otherwise).  I seem to wake up, just knowing that my son needs to be tested, but rarely does he wake up sensing that anything is wrong. That scares me. I hope that, like feeling his daytime lows, he will one day begin waking to these night time emergencies.  Until then, I really should quit fighting that voice that wakes me up but sleep is so terribly inviting!

Dia-Beat-Us?

Many of my American friends will call me Wilfred Brimley because I am one of those weirdos who say "dia-bee-tus" and not "dia-beet-ez".  Of course, to me, my way makes much more sense but I am aware that when you break the pronunciation down it sound defeatist.   I have actually been pretty positive lately.  My son is slowly starting to take better care of himself.  As Reyna recently pointed out, he has been successfully honing his Macgyver skills.  We are coming up on 11 years of living with Diabetes and while I would still think an eviction order should be given, I am still able to count my blessings.

The top on my list of blessings remains the wonderful friends that living with Diabetes has brought us.  These amazing friends have raised equally amazing children.  This week I was given the privilege of seeing how incredible these kids can be. I was invited to be a part of a group called "CWD Teens for Change".  It is made up of teens who want to give back. They feel that  Children With Diabetes Conferences have given them so much that they want to share the experience.  They are donating their lunch money, Starbucks money, babysitting money and more so that they can the money required to bring a teen and their family to one of the Friends for Life Conferences.

The enthusiasm that this project has been met with has been overwhelming.  It truly makes you proud.  Maybe that is why when I first read an article a day or two later in the "Natural News" that I filed it as "not worth my breath".  The author tried to make me feel "beaten" as he suggested that feeding my young son milk and my own diet during pregnancy may have caused my son's illness. Its not enough that I have guilt about not recognizing the symptoms of diabetes and having my son come within hours of dying. Nope, I now need to question if I gave up on breast-feeding too early and re-examine what I did or did not eat while I was pregnant.  I don't have that kind of energy to waste dude. 

So I continued my week deciding not to even mention the article to friends or post it on my website.  Who needs this crap? I was happy to see teens doing such amazing things--including my own teen.  I would not let Diabetes "beat us".  Unfortunately a second moron gentleman, felt it necessary to add his two cents on why my son (and other children) had developed Type 1 diabetes.  According to this person, "Many researches are claiming that childhood diabetes type 1 and Type 2 could be related to excess sugar intake and poor quality diet.  Children are consuming sodas, juices, milkshakes and candy in excess, may be a big contributing fact to acquiring Type 1 and Type 2."  and on he goes to say that these children are inactive and poor parenting is also causing this problem.

WT???? Yeah, right bud! My son was diagnosed when he was two years old.  At that time yes he drank milk and juice.  I don't think he had ever had any pop (soda), he never had a milkshake (and I am not sure he even has at 13), and his candy intake was non-existent.  He was two and keeping up with his five year old brother.  Inactive was not in his vocabulary. I actually wonder if he was too active because he only stopped to sleep! 

This guy pushed me to the edge. I wanted to write. I wanted to scream a few choice words at him.  I looked at the 32 comments slamming him at the end of the article and felt a bit more vindicated so instead I posted it to a few friends on a Facebook page.  They were just as choked as I was.  Soon more emails and phone calls were hitting this poor fool and a retraction was quickly published. 

I know that there is no cure for stupid. I know that we can only keep working to educate and create awareness. We are succeeding in creating caring, generous, and amazing young people.  Hopefully we will also begin to succeed in creating more aware and responsible media outlets that allow such garbage to be published. 

Diabetes threw a tantrum

We began to prepare for our weekend away...

Clothes?

Check.

Spare clothes for when the first set gets wet in the snow?

Check.

Glucometer?
Check.

Spare glucometer?

Check.

Test strips, ketone strips, alcohol swabs, spare pump, batteries, and infusion sets for every day we will be gone?

Check.

Insulin and cartridges? Oops, insulin is old and the other bottle is empty.  Make sure to grab a new bottle.  Actually grab two.

Why two?
One could freeze. Get two.

Soon we hopped in the truck and did the head count--two adults? Yep.  Two kids? Yep.  Three dogs? Yep and we were off! A weekend of snowmobiling, relaxing, some snowboarding, and possibly a drink or two.

Saturday morning Larry and I were up before the boys and headed out for a day on the powder.  He found us a great trail and the first cabin we found housed old friends of his.  We soon kicked them all out of bed and went off to enjoy four feet of powder, some packed snow, frozen ponds, and sunny skies. 

Half way through our day my cell phone rang. We were in the middle of nowhere. Service was poor so I had to wait to call my son back.  A text got through while I was trying to get a call out. 

"Where did you put the insulin?"  Where did I put the insulin??  What the heck was he talking about? I threw out the insulin and told him to get a couple new vials.

I sent him a message back saying just that. The insulin was whereever he packed it.  The text back left me on the verge of tears.  He didn't pack any. Why did we have to bring diabetes along? Isn't life enough to deal with? Why did we have to deal with remembering all of this extra stuff?  I was doing my best not to panic or be overwhelmed. Insulin could be purchased in the nearest town.  It would cost me out of pocket but the weekend would be saved. 

Larry had a better idea. His cousin had a son with Type 1.  He would call them and see if he used the same insulin.  He maded the call. The son used a different type but it was still fast-acting. What do we do? I knew that Larry would be upset to have his day ruined and I didn't blame him. I knew that changing insulin was not going to kill my son but it would work differently and require some serious testing.  Larry asked me what to do. I said, he could use the other type of insulin.  He told them to bring the insulin over to my son.

We gave them a half hour and then we called to see what had happened.  My son was outside playing in the snow. His pump was filled and all was okay. I reminded him to test a lot and all was okay. 

We continued our day and my son continued his.  We got back in the early evening and found everyone alive and content.  We promised the boys that they would be able to ride around the next day but they seemed to have had a great time amusing themselves in the snow.  As the evening wore on, my son sang the praises of the new insulin. He was running lower than he had in ages and he was happy about it.  I reminded him that he was also more active than he had been in a long time.  I checked how much insulin he had in the cartridge and tried to decided if I needed to buy more or if we could make it until we got home. We were good but I needed to top up the cartridge he had. When I asked for a new cartridge my son said, we forgot that too.

What???? Again, I was surprisingly calm. I asked how he filled the cartridge. He said he should be a doctor! He used a syringe and filled away.  Forgetting the cartridges was my fault. I was sure there were some in the bag but didn't look.  I was glad he had figured out how to make things work on his own. We refilled the cartridge he had out and all was okay.

That night I reduced his basal rate in fear of the different insulin and the higher activity.  He remained okay. He lost a site during the night that Mom didn't find out about until the next day so he was a little high. The next day was equally as active and that night diabetes continued its weekend long tantrum. It had interupted a couple's day.  It had messed up a "guys' day".  The last straw was it messed up another night sleep--for four of us.

At 3 am I woke up.  I stumbled across the hall and tried to test my son.  I couldn't see. I couldn't find a light.  I had him wake up to test.  He couldn't get blood in the strip either.  We turned on a light, no longer worried about waking his bunk mate.  Thankfully the other child continued to sleep while we waited to see what the meter would say.  He was low.  Crap! I had brought a box of juice packs so I headed over to my room to get one. Of course my book fell and things began to crash in the tiny room.  So much for being quiet!

He drank the juice. I turned on my light to read knowing that I would most likely wake Larry but hoping he would sleep.  No such luck. "He's low?" Yes. He tried to go back to sleep.  

I read for 15 minutes and headed back into my son's room. Test. Going up but still low.  Crap! More juice. Box is now harder to get into. More banging. Will anyone sleep through this?? Drink. Read. Wait. Hear more people waking. Lovely.  I suck at being quiet at three in the morning in someone else's house. Diabetes should learn to be quiet. I wait. Retest. Yes! I can sleep!! Well for another couple of hours because we were leaving first thing in the morning.  It would have been so much nicer if diabetes had have stayed home or at least learned how to behave in public.

Sorry Diabetes, there is no room for your suitcase

So we are getting ready to go away for a few days. No not to a warm place but to "enjoy" the snow.  Sounds like a bit of a misnomer to me but to the guys in my life its a little piece of heaven! I will admit that I enjoy the peace and the beauty of the white landscape.

To get ready to go involves the usual--pack clothes, pack extra clothes for when the first set is wet, pack the dogs, their food and leashes (they love to run away when they go away), pack up the homework, and pack up the equipment for the snow.  Then there is the packing for those of us who are experiencing aging--pack the medication, the moisturizers, and other preventative devices.

Since we are taking diabetes with us, it refuses to stay home alone for some reason, we have a few more items that need to be packed.  There will be extra test strips, the ketone meter, a few spare sets, extra insulin, spare cartridges, spare meter, glucagon, glucose tablets and some juice. Yes, people normally have juice in their fridge but when I am stumbling around in someone else's house at 3am, I like to have a quick source.  I know, my friend Jen recently reminded me that we should have tablets for  lows, but being the horrible parent that I am, I haven't had a chance to stock up the supplies.  Yes, we have probably been low on tablets for at least two weeks and I have been to the pharmacy but I forget.  There are tubes that are still full for travel and puberty has made low treatments few and far between so it wasn't a real emergency.  On the upside, Jammers were recently on sale so I can grab a box to take with us.

I love going away. I love taking a break from the house, the office and the work that piles up on a daily basis.  I love the fresh air and the change of scenery.  I will enjoy spending time with my guys.  I hate taking Diabetes with us. It is annoying and requires a suitcase of itself. I really wish it would learn to stay home by itself...or better yet take its own permanent vacation out of our house!

Three words running through my head...

Privacy.  Disability.  Normal. These are three words that I have been pondering a lot over the last few days for a variety of reasons.

Privacy.  My son is very private about his diabetes.  He is very discreet when he tests or boluses.  He does not tell people that he has diabetes.  He does not like anyone to know when he is high or low.  That scares me.  I can understand not wanting to be singled out. I get not wanting to be "different" especially when you are in your teens but people need to know to understand. They need to know so that they can help you. As we saw the other weekend, he even keeps the highs and lows from me at times.  Thankfully he now wakes me for the lows before he goes to bed at night but diabetes has become so routine for him, I guess, that he doesn't want any intrusions.

This desire not to be different led me back to another word that had been swimming through my head--disability.  In Canada we get very defensive about this word. Many groups work hard to argue that diabetes is NOT a disability.  I can see that view.  People like my son do not want to be labelled.  They are not in a wheel chair.  They can feed themselves.  They are not disabled.

But then there is that word "normal" and when you live with diabetes life is not normal.  There is nothing "normal" about force feeding a child a peanut butter sandwich at three in the morning just so that they are able to wake up to see another day.  There is nothing normal about making yourself bleed ten or more times a day just to be able to function. There is nothing normal about poking yourself with a needle just to stay alive. 

Three words.  Should you be private about diabetes? Is it a disability? Does diabetes allow you to live a normal life? Three powerful words. I have my own answers as a mother but they probably won't jive with my son's.  The only one that I can clearly define is "normal" because long ago, a good friend told me that normal is only a setting on the dryer.

What would you do?

Today I have been doing my very best at doing nothing. I am easily distracted and have spent more time searching for ellusive quarters to finish my latest Packrat collection than getting any meaningful work done. Its a lovely sunny day with a storm forecast for tomorrow and my get up and go seems to be flaked out in the sun. 

In an effort to see some productivity today I began going through my twitter peeps to see what was new in research, blogs and of course cures for diabetes (there is no end to the number of "cure your diabetes" tweets to be seen).  As I went through some great information and read some blog posts that made me sad, I read one that really made me pause.  It was a "diabetic parents" blog called "Left Field".  The author's husband, who must have diabetes, was pondering what he would do if he won a lottery.  He stated that he would go to Brazil to have a stem cell transplant that would allow him to live diabetes free for 12-18 months.

My first thought was how devistating to go back to life with diabetes when your magical time was up.  She went on to state that he thought being able to experience life diabetes free for the first time in his lifetime would be worth it. This made me think of my own son. Would he think the same way? He has never known life without diabetes.  He can barely remember last week so there is no way he remembers life 11 years ago when he would eat without testing and bolusing.

I can't answer for him so I wondered what it would mean for me...12 months without night testing would mean that I just might start to make up for 17 years of sleepless nights only to be thrown back into full tilt when the "cure" wore off--but I could handle that. It would mean a year without a log book. No writing down everything he ate and every reading. It would mean no readings! No nagging to test, no asking "did you bolus?".  No site changes, no insulin cartridges to fill. No trips to the pharmacy for more test strips. No more test strips in the washer. No more test strips in the dryer. No more test strips in my car, in the driveway, under the couch or in the plants!

This is getting exciting but wait...it only lasts until midnight, I mean 12-18 months.  After that we are plunged back into the life of counting every carb, bolusing every morsel, testing day and night, worrying about A1c results, logging, fighting lows, injecting highs, advocating, educating, and paying the wages of more than one pharmacy employee.

Its a wonderful dream and for those who feel a cure is nearby, maybe its a fantasy they will bask in on a semi-regular basis. That was long enough in fantasy land for me. It was rather intoxicating but back to reality and getting that test strip out of my African violet so I can water it (I know it needs more help than that but its a start!).

Strength in numbers

I began the new year with a renewed commitment to both my blog and my website.  I was going to provide more information as well as make sure that everything was kept fresh and uptodate. I have been working hard at my promise to myself and have been very happy with the results. 

I have been going back over old school policies and looking to see if more boards are now protecting their students with diabetes.  I was happy to see Alberta had made changes.  There were more policies out there. We were doing something right.  I continued looking that the rest of the country and my enthusiasm took a big hit.  When looking at British  Columbia I saw that most places had antiquated policies regarding the administering of medication in schools that had been passed in the late 1990s! There were some places that had upgraded to create a "medical alert" policy but these policies were very minimalist.  I did note however, that almost every board had an anaphylatic policy. 

This brought me back to the good old breast cancer frustration.  No, its not as strange of a leap as it sounds.  Remember, in earlier posts I have discussed how wonderfully the breast cancer people have promoted their cause (and the allergy people have obviously done well at promoting their's).  Some have said that diabetes is not "sexy" like breast cancer and that's why they are more successful than we are. That made sense.  They also use pink as an awareness color and face it, its a nice color for many items. Diabetes can't decide if we are grey or blue.

I was frustrated.  We can't get the public's attention like the cancer people do.  We can't get the school's attention like the allergy people do. What is wrong? I have been working on this stuff for over 10 years now.  How can all of my work and the work of so many others be for not? We had to have made some inroads.

I had tried to appease myself by remembering the things that had changed...and then came the latest uproar in the diabetes online community.  For those of us who live and breathe diabetes, you know what I am talking about.  There has been a renewed fuss surrounding the JDRF.  I won't go into it at the moment because the issue has been flogged to death and then some, but what I took away from it is how separate we have become when we desperately need to be united. 

We waste our energy raging over which type of diabetes is worse and whose fault it is that we have to deal with it.  Can't we just all agree that "diabetes" sucks and we need to do everything we can together to make it better? 

It would appear that there is also a battle over which charity you should support and "my charity is better than your charity".  For me, each organization has something to offer someone. I am not a big fundraiser. I hate asking people for money.  I ask governments for money but that is different. Possibly, its because of this that I really have no time to worry about which charity should get my money (that and the fact that my visa gets the bulk of my money).

The third area I have heard debate lately is between parents and people with diabetes.  I really don't get this one.  As a parent, the "people with diabetes" are someone's children.  Their perspective is invaluable because they live in the same place as my child.  They have heard the "cure in 5-10 years" speech that many specialists love to give the newly diagnosed. (Thankfully we heard, "In 5-10 years the technology should be a lot better and make his life easier but be prepare for impotence in his twentys and other possible issues.")  They have been "low".  They have been "high".  They live with something attached to them 24/7 or they know that they forget to take insulin now and then. They know what its like to be a human pin cushion.  I don't. I know what its like to care. I know what its like to will your child to live. I know what its like to be sleep deprived but they offer a unique position that I personally treasure.

My focus is on the now.  I focus on trying to help people today live to see a tomorrow with minimal, if not no, complications. I spend my energy helping people get through with what they have and try to get governments to assist so that they can have better tools with less cost to themselves.

Maybe its because of this that I am so frustrated. We are all on the same side.  When push comes to shove (and there seems to be a lot of cyber pushing and shoving going on) we all want our loved ones with diabetes to be healthy.  We would all love to see a cure.  We all want the very best for those with diabetes. 

If we are to go forward, we must be together.  As one voice we are strong but as a mob who are simply shouting at one another...well we are just that, a disgruntled mob. Many have said it before but I will say it again...United we will stand but divided we fall. Let's move forward united and stronger than we have ever been so we can truly see real change in the world for people with diabetes.