Wednesday, August 31, 2011

The Water park

After finally figuring out how to bolus for food in the US, we headed north once again.  The final stop on our journey was my mom's to pick up our dogs and visit with family.  My parents were back from their trip to Alberta and my brother and his family had dropped in during their own cross-Canada adventure.

As we got closer to my mom's, my brother began texting me...
"I am at the grocery store.  Will you be here for supper?"
Unfortunately we still had eight hours to travel so I had to tell him no.  A few hours later I received another text....
"I am at the grocery store.  Will you be here for bedtime snack?"
Bedtime snack? Does he live in the grocery store? No snacks for us.  We were still too far away and would have to get a hotel one last time before we arrived.  Because I was driving at this point, my son began texting my brother back. We decided to meet for breakfast the next morning.  My brother then asked my son if he wanted to go to the water park with them the next day.

I really wanted him to go.  My brother lives on the other side of the country and we don't get to see each other very often. He is my son's namesake and it would be great for him to spend the day with his young cousins.

I was terrified of him going.  Who would watch his pump? Who would remind him to test? My brother really hasn't been around him enough to know a lot about diabetes.  He knows its a big deal mind continued along this track with the "let your son be a kid first" blaring over top of the insanity.

My son was going. They would head out after breakfast. I had an hour to prep my brother between bites of food. I had a night to prep my son.  They had to remember to test.  The pump had to be put in a locker if everyone was in the water (its water-proof but with all of the cracks that he has in it, I knew it would not be able to handle water anymore).  He had to use the "disconnect" feature. He had to bolus for the missed insulin.  He had to have fun but he had to test. 

The next day arrived. I ran over things with my son. I gave him money for a locker. I talked to my brother. His girlfriend didn't plan on being in the water. She would watch the pump and the meter.  I tried to breathe. I let my son head off and tried to remember that he was going to be a kid with his uncle. He was going to be fine and any errors could be corrected when they returned.

A few hours later I received a text from my brother...
"Just finished at the water park, getting pizza, L### took his insulin an hour or so ago.  I think it said 11.9?"

I laughed a little. I breathed a lot easier.  First, my son was testing.  Second my brother got it.  He may not have the terms right but he had confidence in his nephew and was still keeping on top of things. I could relax and deal with the rest of my day knowing that they had everything under control. 

We all met up a few hours later.  They had enjoyed water slides, pizza and even chocolate.  The only problem that my son had all day was that I missed his shoulders with the sunscreen and he was burnt.  I will try to do better next time!

Tuesday, August 30, 2011

Diabetes Crashes our Vacation

3.2 (57)..what in the world is that?? Holy cow, its a low!! And of course it happened at 2:30am but it was a low.  I don't think I have seen one of those since back in June.  My son has either been in range or running on high, high and higher for the bulk of the summer. This was especially the case on our recent trip into the Eastern United States.

A couple of weeks ago, we picked my son up from his father's house and headed off on a road trip.  We stopped in New Brunswick long enough to drop off our dogs with my aunt before making our way to the border.  We here headed to New Jersey, New York and Connecticut. 

Our first day of travel went alright.  There were a few highs and I joked about the last time we had made this trip.  My son had been in double digits the entire time we were south of the border. I swore that the second we crossed back into Canada he instantly dropped back down into range. I was hoping that this trip would be much better and so far so good!

I should not have jinxed myself.  Day two saw his readings begin to creep up.  We added a travel basal and continued to hope for the best.  Driving and highs are not a good combination.  Driving, highs and freeways are an even worse combination.  My son was not happy knowing that he was high and neither was I.  We both wanted to enjoy the scenery, not stress over diabetes.

By the third day, Diabetes had created a complete trainwreck for us to deal with.  We had put in a new belly site and then, my son being a teen, had also enjoyed a monster sized breakfast with a triple digit carb load.  We headed down the highway and I was nervous as to how well we had counted the carbs and whether his system would handle all of the food he had ingested. It didn't take long to find out how badly things could turn.

"Mom, I'm high."
You mean that you are high?
"No, I mean I am HI.  No reading. Just HI"
Crap! You have lots of water?
You have a new site and new insulin?
Maybe the site is bad. 

As we are driving down the freeway to our New Jersey destination, I had my son pass me insulin, alcohol and a syringe. I was going to deal with this disaster head on.  We continued down the interstate and I calculate the correction dose for my son. I don't want to rely on a site that seems to be toast so it was time to stab him and pray he would start to come down.

He then prepared a new site for himself and added a new resevoir of insulin.  We continue driving and I hoped that ketones would not develop.  Having to use the washroom while speeding down an interstate is bad enough but to have to vomit as well in sweltering heat would be the worst. Thankfully multiple injections, water, and a new site seem to do the trick.  After a number of hours and another injection--just in case, his readings finally came down into the low double digits (200s).  We could almost live with that.

We began to more aggressively bolus his meals in hopes of beating Diabetes at its own game.  If I thought a meal should be 50g of carbohydrates, we bolused 75.  It seemed to work...until the next site failure but that was a little further into the trip.

Saturday, August 27, 2011

The time for a cure is NOW

Last night I lay in bed wearing my DRI "Cure" t-shirt and wished for a cure more than I ever have. 

We were headed home after two weeks on the road.  Diabetes had kicked us pretty hard as I will explain in upcoming posts.  We were on a boat and had a 14 hour crossing ahead of us.  I brought up insulin, an infusion set, and syringes.  I thought we were all set. 
A site change was past due. When we settled into our cabin for the night, I had my son do a site change.  A few hours later I awoke to him getting up to use the washroom.  Either we had yet another bad site or he didn't bolus enough for his earlier snack. I rolled over and went back to sleep confident that he was taking care of things.

An hour or so later, I could hear my son up yet again.  I knew that things were not good. I got up to hear the splash of him vomiting into the toilet. CRAP! This was not good.  I dug through our supplies and quickly realized that I had left my glasses down in our vehicle.  Squinting, I looked for syringe and insulin. I also tried to find a new site...there wasn't one.  Crap was quickly upgraded to another four letter word!

I injected a correction and my son began to apologize for waking us up.  I wanted to cry.  I told him that it was not his fault.  It was diabetes.  It sucks but there was nothing we could do to prevent the site failure.  He said that he had tried to creep around but had banged about a few times. Again, we said that there was no need to worry about it. We would worry instead about getting his readings down.

We all finally nodded off back to sleep. I could hear my son breathing across the room from me and knew that he was finally resting. He had said that he was coming back down before the injection so hopefully between the two he would be good to go. That's when I laid down and thought it was ironic that the shirt I was wearing to bed that night said "CURE". 

I have never held out a lot of hope for a cure.  My son has.  After two weeks of diabetes doing all it could to curtail a lovely family vacation, I really want it gone. We have put in our time. I can only imagine what it keeps doing to my son's body. Its time for a cure. We have waited long enough.

Thursday, August 11, 2011

A matter of perspective

Yesterday a friend had posted that it was the anniversary of one of the worst days of their life.  It was the anniversary of their son's diagnosis with diabetes.  Yesterday I also watched as candles were lit all over the diabetes online community.  More children were dying because of this disease. 

My mind thought back to  the day of my own son's diagnosis.  Was it the worst day of my life? Was it one of the worst days of my life? My answer was no.  That surprised me. How could something so devastating, a time period that was so terrifying not be ranked as one of the worst days of your life? son is alive.  The day my son was diagnosed is firmly etched in my mind. I can relive almost the entire day in exquisite detail.  I never forget March 17, 2000 and each March I silently countdown until that fateful day but it still is a day that I remain grateful for. 

That day, so many years ago, my son was a lifeless bundle.  His body was cold.  His breathing was laboured.  With each intake of breath, I prayed he would live to take one more.  All I wanted was my son to live. He was only two. He had so much more living to do. I wanted him to grow to have his own children. I wanted him to bury me not the other way around.

My prayers were answered.  My son was alive.  He is now a charming teenager.  He is tall, smart and handsome.  He also has diabetes.  That brings its challenges but we are both here to meet them. 

March 17, 2000 was not the worst day in my life.  Had I had to live through the pain that the families of Emily Mak and others are facing, in having to bury their children then it definitely would have been the worst day of my life. That day remains etched in my mind. Our world changed forever. Nothing has ever been the same.  My son is still with us though and together we work to keep him healthy and safe.  In the grand scheme of things, its a day to celebrate because its the day Diabetes did NOT win and my baby is here as proof.  I pray we all have a lot more of those days.

Monday, August 8, 2011

Dr. Diabetes Diagnosis the cat

"Mom, the cat has diabetes." That was the text message I received the other day. My youngest son is still visiting with his father and he decided that their cat has diabetes. 

How do you know?
"She is losing weight, not eating and drinking a lot"

He could be onto something.
Has anyone taken her to a vet? Did you test her?
"I will call you in a bit and you can tell me how to test her."

While I waited, I sent a text asking my oldest son (and owner of the cat) if she had diabetes. He said no. 

Later that evening, my youngest son called for instructions on how to test a cat's blood glucose levels. 

What makes you think she has diabetes?
"Like I said, she is drinking a lot and is losing weight.  She was overweight so maybe she has Type 2. I should be a doctor! I should clean the lancet after I test her right? I guess I should just change it, huh?"

Yes, I told him that he should definitely change the lancet. I said that I didn't think that she would lose weight with Type 2 but I wasn't a doctor or a vet. The cat is old and perhaps there was something else going on but I told him that his diabetes diagnosis could be spot on.

After a bit more conversation, he was off to chase the cat.  She apparently was not keen on waiting around for someone to lance her ear. As I hung up I had to laugh, I always thought it was just parents of children with diabetes who saw a new diagnosis in every baggy shirt. I guess if you live with the disease, you can be pretty alert to these things too. We still have no firm diagnosis on the cat.  He told me today that no one will volunteer to hold her while he tries for blood. I hope his diagnosis is wrong but I guess time will tell!

Saturday, August 6, 2011

Diabetes supplies or pay the electricity bill?

Yesterday I went to the pharmacy to order diabetes supplies.  After an initial heart attack when the woman suggested that there was no prescription for one item that I needed for my son, all went well.  When I went back to pick up all of our goodies, the woman at the counter knew our name.  As she tallied up our bill, she hid the screen and said "You don't want to see this."  She was right--over $600 spent and that did not include pump supplies. $100 of it was mine but the rest was all to manage diabetes. 

The glucagon kits, that we thankfully have never used (looking for wood to knock on), were over $235 for two.  I am so grateful that they have never been used but was terrified for the families who need it but don't have the insurance to cover the cost.  We are lucky.  My son's drugs are covered by his father's plan.  I pray my son will have a good drug plan on his own one day or I don't know how he will make it.

$500 for insulin, test strips and glucagon.  There was nothing extravagant in that list.  There were no syringes or pump supplies.  I did not order six months worth of insulin and there are only enough strips there to last 15 days (give or take a few).  That is equal to our grocery bill for a month.  That is rent for a small apartment in some places.  That is the amount of our electricity bill to heat our house during the winter. That is also the amount of money required to keep my son alive for approximately two weeks--scary!

My heart breaks for those who do not have health insurance. Anxiety attacks occur when I think of the fact that my son will have to carefully consider his employment future. He knows what he wants to do with his life but at almost 14, I know that he has not looked to see if that career would give him good benefits.  Benefits are not something that kids should have to worry about. Then again, injecting something into their system on a daily basis to stay alive is not something a child should have to worry about either.

Our province does offer a low income and middle income drug plan.  This will cover some but not all of his supplies if he needed. He would be limited in the number of test strips he could purchase.  He would require special permission to have his insulin covered.  His pump supplies are covered until he turns 25.  This all changes if he decides to live elsewhere in the country.  

I know that there are other countries that have it a lot worse.  We don't live in those other countries though.  We live in a rich country.  We live in a place with socialized health care.  Despite that fact, people with diabetes and other illnesses, must fight to obtain access to devices and supplies. They cannot chose to have the very best in care unless they also have the very best in insurance plans or bank accounts.  

People say that diabetes does not stop you from doing anything but it does limit your career choices.  We have made some inroads.  There are pilots with Type 1 diabetes and people working as police officers who are living with this disease.  In reality, diabetes has a huge impact on career choices.  If you live with diabetes AND you want tight control, you have to be able to afford it.  The easiest way to do that is to have a great job with even better benefits. 

That needs to change. I am not sure how but it needs to change.  For the time being, we can work on having insulin pumps covered for everyone regardless of age.  The next step will be to have an insurance program that covers everyone regardless of income and despite an existing condition. If you make $100,000 a year then perhaps you can afford a $5000 a year deductible but if you make $25,000 a year then lets be able to offer them $750 a year.  Its something to think about. Its something to work towards... 

Friday, August 5, 2011

Mom, she injected herself!

Friends for Life Canada is always a chance for me to catch up with old friends and meet new ones.  One of my tasks each year is helping out with registration.  I love it because affords me the chance to meet people as they are coming through the door.  It always amazing to see how far people have come to connect with other families living with this disease.

Registration in Toronto this year was a pleasure. Everyone arrived at different times and we were able to make sure that their initial experience was a positive one.  We saw people from all over Canada, the US and even a family from the UK.  It was great to be able to put faces and families with names that we had interacted with online for months or even years as well as connect with new people. 

As I have said, my son is very private. He is not interested in sharing his diabetes experience with others. He hates being the center of attention and is often very shy when people who know me come up to him.  He is growing up however, and did interact with a few people and answer a few questions when asked. 

On Sunday, the conference drew to a close. I was exhausted after a very busy day.  My son was glad to see his bed after walking and site seeing with the teen group all day.  My exhaustion led me to the restaurant for food and drinks with friends before we all headed our separate ways for another year.  My son was more interested in bonding with the bed and TV than joining a group of adults. We agreed to meet at the elevators and I would take him to grab a bite to eat before I settled into dinner with my friends.

At the elevator, I met up with one of the families that we had spent a bit of time with over the past few days.  They asked if my son would like to join them for supper. I asked him and he said sure.  I was pleased that he would be spending time with a family that I had already had the pleasure of getting to know a bit as well.

From across the room, I watched their interaction. There was laughter and fun.  They had three children, one of whom was my son's age.  There seemed to be a connection.  As time passed, I was surprised to see that they were all still engaged and my son had not bolted to his room. Things were obviously going well!

Eventually the evening came to a close.  We said good-bye and hoped we would be able to keep in contact. When we were back in my room my son told me about his evening. He had had a great time.  He turned to me and said "Mom, she injected herself--twice!"  My son has been on a pump since he was five. Despite the fact that he should learn how to inject in case of a pump failure, its something that he has never done himself.  He was very impressed that this girl, who was a few years younger than him, had been so self-sufficient and done this on her own. 

I was impressed that he had noticed and said something. One day, perhaps we will get the chance to talk to them all again. They definitely left a wonderful impression on us and hopefully we left a positive impression on them.  Have I mentioned how much I love and appreciate the opportunities for friendship that CWD conferences afford?
Four "Friends for Life"!

Thursday, August 4, 2011

Thinking about Back to school

As I was shoveling out my desk this morning, I came across some things that I had gone through before I went to Toronto. One of the sessions that I facilitated at Friends for Life Canada, dealt with going back to school. I had references to the latest provinces to enact a policy as well as high and low handouts. I also came across my son's school supply list. This made me think that it might be time to start addressing back to school here as well.

I hate back to school.  I used to love it.  When I was a bit younger, I loved the new school clothes, fresh notebooks and clean new binders.  I enjoyed fresh text books and the thought that "this year I would be more organized."  Now I am a mom and I look at things a bit differently.  Back to school means early mornings, school lunches, and new clothes that he will grow out of before Christmas.  Being a mom of a son with diabetes means having all of his supplies for school, having his diabetes supplies for school and arranging to train his teachers in diabetes basics. Did I mention that I hate back to school?

No matter how much I don't want it to happen, we will be back to a regimented life...and diabetes in school. Over the years I have been given some great presentations for both staff and students.  People have sent me wonderful information packages to send with their children to school.  Each year, I dutifully head over to the NovoNordisk website and print off multiple copies of the highs and lows symptoms for the school.

I also pull out the "little red box".  This box has been used since preschool.  It is a box that has emergency instructions taped to the top.  It also has spare glucose tablets, batteries, infusion sets, tape, crackers, test strips, and a bit more inside.  These supplies are to be kept in a safe place in his homeroom.  They are only to be used when the supplies he carries on him have diminished and he has failed to tell me that he is out.

My son has reached an age where he has become very private about his diabetes. Actually he has always been very private about diabetes,but he used to be young enough that Mom would win out and bring diabetes education into the classroom. When he was younger, we would read about Rufus going to school. As he got older, it was the sponge demonstration of your brain absorbing glucose. Now he will only talk about diabetes with his peers on a "need to know" basis.

This year I won't have to worry about educating the teachers. I will double check with the principal to see if they would like a refresher course, especially since there are now two children with diabetes in the school. My son should have the same teachers as the year before and I have met with them a number of times. I think they have the drill down pat.  

In the fall I will instead focus my efforts on ensuring that the Deputy Minister of Education really does keep me in the loop on their policy review. I will also renew my chatter to our school board and suggest with another diagnosis in their school system, that diabetes is not going away and a policy should be in place to clearly outline the roles and responsibilities of parents, staff and students.  Until the fall arrives however, I think I will just search for summer!

Tuesday, August 2, 2011

The letters after my name

Each year I look at the Friends for Life Canada program and I am amazed by the wealth of knowledge and experience found in its presenters. I see names that I have read about.  I see people whose work I have followed.  I see an entire alphabet behind their names and I think, "Wow! How lucky am I to be heading off to see them?"

When the time comes, I pack my suitcase and I begin to panic.  What the heck am I doing?
 am going to catch up with old friends and meet new ones!

Seriously though, who do I think I am to be going to this?
I am one lucky person!

I don't have a lot of letters after my name and yet I am listed as being "one of them"? 

I didn't have an answer to that one. I have been blessed to have been a part of the Canadian CWD conferences since they began.  My role has grown over the years and their faith in me never ceases to amaze me.  I always prepare for the trip wondering when they will realize that I am just a mom.  When will they stop asking me back? This weekend made me realize the answer to that question.

Jeff Hitchcock spoke a number of times throughout the conference. The thing he said that had the biggest impact on me was not when he said that my son's chance of developing kidney disease had nearly been erased because of when he developed diabetes and the tools that we  now use. It was not the fact that mice had been cured of type 1 diabetes over 300 times-- I knew that Mickey was a very happy mouse for a reason. 

The thing that resonated with me the most was when he too discussed the incredible panel of experts that had spoken over the weekend.  He stated that he did not have a number of letters after his name. He did however have three very important letters after his name...D A D.  He noted that many of the audience had the same letters and that others of us had a different three.  Our letters were M O M.  He then went on to say that he also had a math degree which is how he could read so many studies.  

I began to think about my own letters...M-O-M.  I had thought of myself as "just a Mom" but now I had a new view.  I was Barb, MOM, BA.  The MOM was more important than the degree I hold. They truly were the most important letters after my name.  For years, I had been impressed by the incredible Moms and Dads out there. I didn't think of their other professions. I was amazed at what great parents they were first and foremost.  

This new found awareness will not change some things. I will still look at each FFL Canada program in awe.  I will still most likely panic and wonder if I will do justice to the tasks that Laura has entrusted me with.  There will be one change though. I will no longer worry that I am "just a mom".  I will now proudly realize, that like many other great parents in my life, I hold the title--Barb, MOM.