Thursday, June 30, 2011

A Diabetes Vacation

Technically I am on a diabetes vacation.  There is no night time testing. There is no carb counting or yelling out "did you test?".  There are not even any text messages asking "What is your bg level?" The phone smashing to the floor of McDonald's and never recovering took care of that one.

My son is visiting his brother and his father. He is now in charge of his care.  This does not make my life as carefree as it sounds. I sit here, hundreds of miles away from him, and worry, think and wonder what he is doing. Is he testing? Did you change that site? Does he have a new cartridge in? How are his readings going? Has he been low? How high have his highs been?

I do try to not think of diabetes 24/7.  I have tried to limit my worry and let him enjoy his time away. Before I dropped him off, there were numerous pep talks. There were a lot of reminders. After a bit he said, "Mom, this is me you are talking about.  How can you think that I wouldn't test or remember these things?"

Um, perhaps because I live with you!

While we wait for me to have the chance to switch his phone over to another model and mail it to him, its messages through his brother and daily phone calls when he gets up to go over readings. I would love him to call twice a day but this is where Mom has been good. He needs his space.  He needs to do his thing.  Mom has to wait...and I have.

We have had calls that consist of...
"7.8 at 10pm, 13.1 at midnight, 4.0 at 3 am, etc."  but we have also had calls that were "Yeah, I was a bit high but I ate that bread and messed up the bolus."  Followed by, "okay we will go over specifics on another day when you have a bit of time.  Have fun! Love you!"

The vacation is tough. Its strange having no children and no diabetes.  Its great to be able to rollover at night but there is a lot of prayers at the same time. If I woke up was there a reason? Did he wake as well? Is someone watching over him? So far, yes to all of the above.  He has been doing well with his care and is great at calling.  The honeymoon may wear off and teen forgetfulness may creep back in but only fourteen more days.  Soon enough I will be back to complaining about sleepless nights once again!

Sunday, June 26, 2011

Summer Vacation brings Mommy Anxiety levels to a new high

School is officially over and my nerves are already staring to fray.  Despite a very slow start to summer (as in I am still waiting for it to truly arrive!), my son's insulin needs have managed to plunge dramatically. I have adjusted carb to insulin ratios and numerous basal rates over the past few weeks to no avail. 

I have been religiously pouring over log sheets trying to establish patterns and set rates. I have tried to guess future activity levels and needs. Despite my valiant efforts, I am failing miserably. 

Tomorrow my son will be heading off for the first official leg of his summer vacation--a few weeks with his father and brother. I am verging on pure panic and trying to appease myself knowing that there always seems to be a guardian angel watching over him when he is away.

I have a book that I will be carrying around and we will set up times to call when he can give me his readings. I know he will not be pleased to do this but 5am lows followed by mid-afternoon highs and early evening crashes are going to be the death of me otherwise. 
I try to make sure that he is running high before he goes away.  The reasoning behind this is two fold.  One, I know he tends to be on the go more and eating less when he is away.  I also know that he tests less and forgets more when Mom is out of sight.  I would rather him run high and be off in the woods playing with friends than be low and get himself in trouble in the same situation. At the moment, I am not sure that I have accomplished this. I will be doing a bit more tweaking today and then saying a lot of prayers!

Technically this will be my two weeks off. I will be able to sleep through the night but I won't.  I will worry that he is not checking himself and all of the worst things that could happen. He has a deal with his father where by they alternate for night testing. Its probably a good thing but it still makes me nervous as neither have been very good at retesting after a late night low. I also know, as many people have told me in the past, when Mom isn't there to act as his safety net, he will (and does) step up to the plate more.
So as of tomorrow night I will have to shelve my worries. I have to remind myself that he is going to have fun and catch up with family and old friends. I will text.  I will call. He will eventually answer. I will be counting the days until he comes home and he will be counting the days until he goes back. All I can do is pray a lot, keep my concerns to myself, and hope that all I have taught him is starting to sink in and that he will surprise me with his care while he is gone!

Friday, June 24, 2011

When perfect isn't so perfect

I was tempted today to just re-post My Favorite Number blog.  It kind of fits with my night. My son's readings have been all over the map. I am sure that is in keeping with the crazy weather--one day summer and six days of late fall. We have days of extreme activity followed by days of xBox and Dukes of Hazard movies. Add to that sites that are usually left a day or two longer than they should be and you can see blood glucose anarchy quickly developing.

Last night I expected highs.  He had a totally lazy day so when I looked at the blood on his finger as I tested, I predicted that it was of the "high" consistency.  Wrong! It was of the "crap, which way is it going to go" consistency.  He was perfect. He was 5.2(94).  It was 3 am.  What was he going to do for the rest of the night? Would he go up? Would he stay the same? Would he drop? Perfection is rarely achieved. What was I to do?

At 3 am, I hedge my bets that he will drop and feed him two glucose tablets.  I stumble back to bed hoping that I haven't sent him nice and high for his first full day of summer vacation.

When I woke up the next morning, I got up and tested him again. I was positive that I would see a 9(160). I was sure that I had driven him up. Wrong again! He was low.  I went out to get him some juice but of course we only had Crystal Lite.  Okay, I will add sugar to it! A few big spoons full of sugar and off I went to wake him up and get him to drink. I don't normally wake him but its morning and I was up so he could be also!

After a glass of sugary juice and he only went up to 3.5 (65ish).  Next stop was tablets.  I fed him at least another four.  As he was eating, in his sleep, I couldn't help but think "Rockets--the breakfast of champions!"   I so need a life!

As you can see its been a fun filled start to summer vacation. He will be heading off to his father's for a few weeks soon so I had better get things a bit more in control by then. Wish me luck!!!

Thursday, June 23, 2011

Kevin Kline tells it like it is

I am not American. I do not follow the celebrity gossip. I do watch movies. I know who Kevin Kline is and I like his work (who can forget "The Big Chill" or "A Fish Called Wanda").  I may have heard that he was somehow involved with diabetes but then again so is Cliff from Cheers (aka John Ratzenberger) and many other wonderful "celebrities".  Today I watched a clip that made me realize that he is more than just a great actor, he is a father.  He is not just any father.  He is a father of a child with Type 1 diabetes who wants the world to know that we need better for our kids.

Today he told the world that "Once you have a child with diabetes you immediately stop being merely a parent.  You become a doctor, nurse, nutritionist, expert." Mr. Kline when on to point out that diabetes never stops and worries never sleep...and neither do the parents.
For a change, the interviewers seemed to get it. Diabetes was taken seriously during this interview.  The only part that saddened me was the focus on technology rather than a true cure.  I appreciate technology.  I have seen incredible leaps in the eleven years my son has been dealing with this disease and I am forever grateful. I am a bit more content knowing that he will most likely have CGM technology to take forward in his life but he will still have to wear it.  He will continue to be a walking robot with a number of machines needed to keep him alive. He will be alive but there will also be a cost...a huge financial one. 
At the moment, we have difficulty having insulin pumps covered under our health care system depending on your age and where you live. How will my son afford his pump AND a CGM as well as all of the other "stuff" associated with this technology? That truly scares me. It is something that he will have to consider when both chosing a career and deciding where he will live.
I do not want to take away from the message of Mr. Kline however.  He showed true emotion as a father of a child with diabetes.  You could see the worry and sleepless nights in his face.  He described diabetes as being similar to having a newborn all over again.  With a newborn we carefully listen for breathing and fear SIDs.  With diabetes, we also watch breathing but fear ketones, Dead in Bed, and medical malfunction to name a few.
Just after watching this interview, I scanned through my Facebook news and noticed blue candles. Another child had died.  He was a teen aged boy, just out of high school.  This morning I received a memorial from a family of a 24 year old young man who had died because his diabetes became too much of a burden for him to carry. 

Its all very overwhelming. I pray that the American politicians listen to what these JDRF delegates have to say.  I pray that the world listens as well. Together we can work towards a cure not just a larger bandaid. Together our children will live long and healthy lives.

Wednesday, June 22, 2011

The Evil Pancreas Minions vs...well me of course!

I recently went to Chapters and bought myself a few books. I love reading Deepak Chopra whether it be his fictional works or his more serious spiritual works.  He always gets me thinking.  This morning I started reading his book "The Book of Secrets".  Its all about "Unlocking the Hidden Dimensions of your Life". 

As I moved through the first few chapters, I read something that sent my mind reeling in a direction that I am positive the author did not intend.  He wrote that intelligence was found in other parts of the body beyond the brain. Organs such as your stomach and liver actually "think".  This got my over-active imagination heading down cartoon alley.

I could instantly picture what had happened with a diabetes diagnosis.  I have often referred to diabetes as a living thing. I personify its evil nature and discuss it as if it were a spoiled child.  It turns out that I am right! The way I see it, if Type 1 diabetes occurs because of impaired beta functioning in the pancreas then the "brain" of the pancreas has been injured.  The result is confusion and mayhem.  The minions left in the pancreas have no true leader.  Their brains are addled. 

As in any state of chaos, groups or small armies of these minions will form.  They are the evil forces that cause highs and ketones.  A rival gang contributes to lows and people becoming hypo-unaware.  When we speak of the diabetes gods plotting against us, it is in fact these minions plotting and using their injured brains to wreak havoc in their world which creates more insanity in ours. 

I could create an entire movie out of this.  The end result would of course be a cure.  The pancreas would receive the mind altering treatment that it needed to control its evil minions and those living with diabetes would be saved! It would be huge--a true block-buster! The treatment would be delivered not by doctors in lab coats but by super-heroes in cool costumes. 

I can see it all now!! If only we could do this in real life but a small flight of fantasy away from the realities of the evil minions is not so bad is it?

Monday, June 20, 2011

The "LOW" down on a 13 year old's Party weekend

What a weekend! Friday, my son came home from school and wanted to go to the fair with his friends that evening. Where was the fair? At the other end of the city of course! Well, the school year is coming to a close and some of these boys will be going to a different school from my son in the fall, so I agreed to allow him to go.  He had glucose, meter, pump, cell phone and was set. 

As I picked him up later that evening I was rather amazed. My baby had been out in a city without me or his older brother, walking the streets at night and I had allowed it? He was with a crowd of a dozen or so other young people so there really was no danger involved. It was just scary that he was old enough to have this sort of responsibility.  He had tested and all was fine but I knew that after walking for five hours on a fair ground and goofing around with his pals that Diabetes would get its revenge.  It had behaved while he was out.  There were no lows to worry about so you know that the night would be rough! 

This was one night that I decided to be proactive. I put on his "low" basal was sure I would give myself a small reprieve.  When I tested him at 3am he was perfect. I gave myself a mental high five and went back to bed with a small glow of victory. I had beat Diabetes at is own game this night!! Oh yeah!!

My victory was short lived however. There was to be no sleeping in on this Saturday morning. I hadn't extended that reduced basal rate and Diabetes took advantage causing him to be low.  We all got up, showered and headed out to breakfast instead. Take that Diabetes!

Later that night was party number two for my social young son.  This party I knew would be active.  A group of boys were headed off into the woods as we arrived but I was more concerned with making sure that he again had all of his supplies so I didn't think to adjust any basal rates. After a few hours, I sent him a text and asked if he had tested. He said he was just about to do it.  I waited.  An hour later I received a second text..
"I am 3.4.  Took 4 tablets."
3.4 (62) Crap! but at least he had treated. I called him back and told him to retest and put that "low" basal rate on.  I waited and sent another text asking if he had retested.  He assured me that all was okay. 

We got home after midnight that night and once again I double checked to see if the temporary basal rate was on. This time I also made sure that I reactivated it when I tested during the night. I was going to beat Diabetes this time! Wrong.  I may have delayed things but Diabetes continued to send my son low multiple times during the rest of the day. I was really getting tired of this.

Sunday evening I sat down with the meter, pump and my son. I got out the log book and got serious.  I made carb to insulin ratio adjustments. I analyzed basal rates.  I changed profiles to allow for summer late nights, later mornings and increased activity levels.  Once again I was confident that we would at least see a few days of good readings.

Wrong.  Diabetes kicked my butt once more.  The night was fine but by 8am things were going down hill fast.  3.0 (54), four glucose tablets....3.0(54) another four glucose tablets and a few choice words...5.6 (100) victory but by then I was wide awake. So much for sleeping in on a stormy Monday morning. My son got up as well, complaining that his mouth felt like he had eaten a tonne of sugar...well you did!

I have more changes to make before my son heads off to visit his father for a few weeks. If this keeps up, my nerves will be shot before he heads off on his own.  The reality of diabetes is that once I get these rates just perfect, he will have a growth spurt and we will be fighting highs for the next two months. I so love this windy, twisted road of life with Diabetes...grrr! Give me strength!

Friday, June 17, 2011

Little Fingers

We recently enjoyed the company of a lovely twenty-three month old little girl for a day.  It was a big change for us because other than her, we have no real dealings with small children and haven't for years.  I see my nephews only once every couple of years and any other children we are around tend to be a lot older.

We learned about Special Agent Oso and Thomas the Train.  She had fun coloring and playing in strange places and I got reacquainted with the art of changing diapers. As lunch time approached, she plopped herself down at the spot where my son had laid out his lunch fixings. He had bread and jam, which she was interested in having herself.  He also had his meter and lancet.  I watched as she looked them both over. I was nervous that she would accidentally lance herself but she just continued to investigate. 

As I watched her, I realized that she is the exact same age that a friend's daughter was when she was diagnosed with Type 1 diabetes. I remembered that my own child was only a few months older than her when he was diagnosed. I saw those little fingers that wrapped around mine to take me to her next place of discovery and was immediately sent tumbling down the rabbit hole. I remembered that when my son's fingers were that small I used to have to cover them with blood before he ate. I remembered how he never flinched when I injected him but would refuse to eat anything that was put in front of him. I remembered my tears of frustration and his cheeks bulging with the food that he put in his mouth but would not swallow.  I prayed that she would remain the healthy little girl she currently was and would never experience any pain or disease.

She was soon off again, searching for my son and wondering what her grandfather was doing.  She played with the dogs and eventually sat down to watch TV before having a nap.  I was ready to nap with her but shook it off and made some blueberry muffins instead. 

After a short nap, she was recharged, refreshed and ready to go again.  She found a new place to play under the kitchen table and amused herself for quite awhile.  After some serious playing she had worked up and appetite and looked at my fresh muffins with hunger in her eyes.  I gave her a bit and my son had the rest.  I told him the carb count and automatically calculated the carbs in the piece of muffin and small yogurt that our tiny guest had.  I smiled when I realized how automatic this was and again, I said a small prayer hoping that she would never have to worry about the carb count before eating any of her meals.

For years, I could not look at small children. I would see them toddling off to preschool and entering their kindergarten classroom and the memories would come flooding back. They were so small.  My boys were that age once.  When my youngest was that age he had to bring a meter, spare juice and a needle.  His mother went everywhere with him.  I watched for stumbles that were not from untied laces but from blood glucose that was dropping without warning. There were bumps, bruises and cuts from missteps when low but we had made it to the teen years.

Now he is a tall young man who will soon be looking down on me.  He lives in the fridge and has friends all over town. He spends days away from Mom's prying eyes.  He boluses and tests on his own.  His hands are calloused from testing and his fingers are no longer covered in blood when he tests.

No one should have to live with this disease but despite it all we are...we are living our life and enjoying each day.

Thursday, June 16, 2011

Exams and Diabetes...what a stressful combination!

Exam week is winding down and hopefully so are my nerves. My oldest is very self-sufficient and pretty serious about his grades. My youngest, well this is his first time around.

I find myself nervous for both of them. I want them to do well. I check in with both of them each day. I am sending good luck and wisdom vibes each morning. They are both great students so they should do quite fine but there is always worry.  Diabetes has added an entire new level of anxiety to the equation however.

As I have mentioned, we had been dealing with low, low, low and yep, more lows. I have dropped basal rates, added temporary rates, and changed carb to insulin ratios.  Because he is in exams for only the morning and then off for the rest of the day, I had seriously thought of switching him over to our "weekend" basal rate.  Then came the anxiety.

He was perfect on Monday for his first exam.  Readings before and after were exactly where I wanted them.  His performance was his own and was not marred by highs or lows.  To change to the weekend pattern would adjust some of the early morning basals.  This could mess with the perfection I had going! I couldn't do it. I left things as they were, tweaking the "school day" rates.

All night I was anxious.  I had anxiety attacks and woke up feeling horrible.  Did I do right? Would he be okay for day 2? No, not really.  Diabetes decided to mess with that and he ran high for exam number two.  Day three was a bit better.  He seemed in range although I can't say for sure because he forgot to test when he started the exam but he was in range by the time he was done and reviewing what he had done. 

Today is day four. He knows his stuff cold. Its science and he really seems to understand the concepts.  I am hoping for some positive results so he can see that his hard work (Mom making him study for the past two weeks) really paid off. He is nervous about his last exam but he has decided to meet with his teacher for some extra help today before tomorrow's exam.  I am excited by the fact that he is beginning to take some responsibility for his grades without too much pestering from Mom.

Two more full days and I am shed myself of the "school days" anxiety.  Two more days and we can fight with basal rates again without fear of messing with school testing. Two more days and I will have about 10 days to get his summer rates sorted before he heads off to spend time with his father and his brother.  That will bring a new load of anxiety and stress as I worry about him testing and bolusing while he is away but we will take one set of worries at a time for now!

Monday, June 13, 2011

Our Pharmacy, Our Friend

I have really come to believe that your pharmacy is the most underrated member of your diabetes team. We often take them for granted but live to complain when things don't work out as smoothly. They hold all of the power. They can give you the devices you require or they can make you squirm until you get them.

We were exceptionally fortunate for the first 10 years that my son lived with diabetes.  We had the best pharmacy around. They are a small pharmacy that gets to know their clients and always work to do the best by them. 

They showed us new meters to try in the early years when I was having trouble finding the perfect fit for us.  They helped with insurance forms and government paperwork to ensure that my son always had everything he needed.  They became our friends.  We spoke of our children.  We offered help to each other when it was needed.  They truly cared. 

We now live in a larger area and go to a pharmacy that is not nearly as personal.  One of the pharmacists from our old pharmacy offered to "hook me up"  with a pharmacy in the general area but it is a bit out of the way so I have continued along with the place ten minutes down the road.

It has been a bit annoying having to go back to submitting my own slips each time to have the money reimbursed for my son's supplies but that is what happens when you are no longer in a small community that knows your son's insurance provider.

Yesterday brought me hurdling back in time to when we first moved here.  Changes and a pharmacy that did not know us equated to a lot of trauma. Its been a year but I still won't say that they know us yet.  I still go to the pharmacy on a regular basis and spend an obscene amount of money on insulin and test strips.  They are quite nice but its the bureaucracy that they seem to be swimming in that we did not have to experience before.

For example, last night, it was a Sunday and I figured a perfect night to get my son's supplies reordered.  Everyone else thought the same thing it would appear and the counter was very busy.  I asked for AccuChek Mobile test strips.  They didn't have any.  They didn't know we, or anyone else, were using them and the woman who orders them hadn't restocked. She questioned if my insurance would cover them. I said that they have always covered any strip we chose to use so I was not worried about these ones. She then state that I could get them the next day which was fine by me.

She went on to tell me that my son's prescriptions had expired.  They had been telling me this for the last three or four times I had gone in.  Once again I explained that no, the prescriptions were all refilled by his doctor in April.  They said that some of the prescriptions were refilled but the doctor had not specified that he needed insulin so it was not renewed. 

Okay, they said that he needed pumps supplies, syringes and such but not insulin? According to the technician, they had missed the insulin and his prescription had expired. They would give me more but I had to contact his doctor and get this prescribed.

I left shaking my head.  This was just weird. I could not imagine them missing insulin.  Bright and early the next morning, I was in contact with the hospital and asking about the prescription.  The secretary pulled my son's file and said that they had requested insulin.  She resent the complete prescription to the pharmacy and asked me to call them. If they didn't have things straight then she would call.

I waited until I was sure that the pharmacy was open and I placed my call.  After five minutes of confusion, checking files, checking the fax and finally checking with the pharmacist, she assured me that yes, they finally did have the insulin prescription.  All was well and he was good to go for another year.

My nerves! I know I was terribly spoiled before. I know our old team was just too good to us. I understand that this is a larger center. I understand that I have made this choice because of convenience.  I guess it could be worse but boy do I ever still miss the old pharmacy team. We will see how things go. I may have to take that longer drive to a different pharmacy yet.

Sunday, June 12, 2011

The "Lord help me!" Basal

As I mentioned before, it is technically trying to head into summer here.  Temperatures have been all over the map for the past few weeks and more than two hours of sunshine at any given time is considered a miracle.  Despite that fact, my son has been more active than ever.  He is out playing hockey with friends in the neighborhood, at school and in other people's neighbourhoods.  We have had him mowing grass and helping with renovations to the backyard.  He has been a busy boy and his blood glucose levels are beginning to tell the tale.

We have gone from rarely seeing numbers in the two's (36+) to having a new favorite number of 2.9 (52). He was 2.9 at 9pm.  He was 2.9 at 3:30am. He was 2.9 at 10:30am.  He was 2.9 at 2pm.  You get the idea. 

I obviously have some serious basal adjusting to do. In the meantime, I have been trying to ward off all of these lows.  We have an "active day" basal for things like sports days or times when we know he will be on the go for at least eight hours.  We also have a "LO" basal for those nights when I have been fighting lows and nothing seems to work.  Because we have rain, sunshine, drizzle, rain, and then sunshine, I have been using the "LO" basal.  It gives us two hours of reduced basal rather than dropping things for the entire day.

Today  after umpteen lows, juices, and retesting, I reminded him about the "LO" basal.  As I was talking to him, my brain thought, "To heck with a LO basal or an Active Day basal.  What we really need is a 'Lord help me!' basal."  It would be the one you push when you are clean out of options.  You would implement that basal when you felt you have colossally failed as a pancreas and need divine intervention.  It was for those times when highs would not come down no matter what you do and lows refuse to respond to any of your treatments. 

With summer coming and my children away from my for much longer than I would like, a "Lord help me!" basal would also be perfect to keep him safe when he is away.  I would set it before he travels for any length of time and could truly rest while he was gone.  This is definitely the solution to many of my worries. Its not a cure but it would help reduce the rapid increase of grey "worry" hairs that I continue to get.  I mean, Divine assistance? That could be pretty powerful!

Alright pump companies, get on that phone and see if you can get a direct line to a higher
 power. Ask him/her to work with you on that new basal rates for frazzled parents and people with diabetes please.

Saturday, June 11, 2011

That smoke was from my brain

Did you see the smoke? Yes, once again I have been thinking. As I put away the dishes in the dishwasher and listened to the radio, my mind began to wander.  I was listening to stories of the latest cancer relay. I had heard of celebrity involvement in a recent camp day benefit.  I had received a great note from a friend who had done a story on someone involved in the Edmonton protocol who wanted to share.  All of this together in my head as I dealt with my domestic duties sent me carening into one direction...Advocacy!
It may seem weird but that is how I ended up there. I began to think back to an idea that was presented to me years ago. It was from a diabetes organization in another province.  They wanted people to truly understand and "get" what was involved in living with diabetes--type 1 or 2.  They went through a lot of planning. They had prizes and celebrities involved.  They did not do a walk or have a car wash, they asked people in the public eye to live with diabetes for a day.  They had them test and inject.  They had to weigh carbs and deal with both highs and lows.  They made them stop what they were doing and think about diabetes numerous times during their day. 

I always thought that was powerful.  The high profile people involved were from the media and the government.  Getting to them was a great thing.  Getting them to understand was even more powerful.  This is something that I have wanted to do for years. I would LOVE to get tv people, radio people, and people in government (especially those in health and education) who had to experience what we do each day.  I think the memory would stay with them for years.  I know you could never get someone to voluntarily jab themselves with a needle 4+ times per day or even lance their finger but there are other ways to still make the point.

This brought me to another awareness effort that was done years ago. I believe it was through the JDRF but I could be wrong.  It was again, a large organization who sent out emails multiple times during a specifice day--"test your blood", "Inject", "you are low, treat yourself and retest in 15 minutes", "You are high.  Drink a lot of water and inject".  This was great but emails are easy to ignore or put off. The use of an elastic to snap on your wrist for tests or injections was great however.

Awareness.  Understanding. A knowledge of how serious diabetes truly is.  That is what I would hope to accomplish if I could do something similar to these two ideas. To bring people to a new level of understanding. It would be wonderful for others to understand why we live in fear.  It would be great for more governments to understand why we need help for our children and why our loved ones need access to these supplies and devices.  It would be great for the media to grasp what this disease really is and take a bit more care in their reporting.

Maybe this is something I will have to work on. My November Diabetes Awareness project perhaps? What do you think?

Thursday, June 9, 2011

I never did like rollercoasters

I am not a carnival ride person--ask my kids.  My oldest son is a roller coaster freak.  The scarier it is, the happier he is.  My children live to torture me by making me got on some of their crazy rides but nothing is more insane that the ride called "diabetes".  It is one that I did not plan to get on and sadly there is no way off.

My favorite saying is from an amazing mother of a child with diabetes who years ago told me that "living with diabetes is like driving a car from the backseat, steering with two rubber bands while careening down a winding road."  That about describes it! Its just nuts.  The ride will leave you in tears of frustration and a reading "in range" can produce a weird happy dance that is understood only by others traveling this road as well.

We deal with lows and picture young minds starving for glucose.  We can fear seizures and brain damage.  We experience highs and wonder if this one will be the one that starts to shut down those small blood vessels in the eyes or kidneys.  We careen down this road wondering about the unknown and praying that our best efforts will be enough.

When I was first put on this Diabetes roller coaster, I quickly learned that there was only one way to maintain my sanity.  I had to look at life in four hour blocks.  That was a challenge. I was a person who planned for 10 years ahead and now I could only plan for four hours? I realized that if I wanted to stay somewhat sane then four hours it was. 

Why four hours? That is the technical duration of our fast acting insulin.  That was the time between the breakfast needle and lunch,  the lunch needle and supper, and the supper needle and snack.  Four hours was what counted.  In four hours, I could generally see if the ratios for a meal were set okay.  After four hours I could make a decision on basals but four hours was my report card.  Did I pass or fail as a pancreas during that time frame?

Times have changed and we are no longer injecting every four hours.  My son now uses an insulin pump and we bolus on an hourly basis it seems as he grazes through our kitchen.  I still look at life in four hour bites.  Its the only way I can handle things as yesterday clearly shows.

Summer is finally thinking about making an appearance here so we are seeing an increase in activity levels.  There is now hockey outside and grass that is being mowed.  Last night I reduced some basals.  He was low in the evenings and when waking up. I knew that this would be the first of many summer adjustments. 

Later that evening I heard someone stirring. I got up and found my son in the kitchen getting ready to make some Crystal Lite.  My first thought was he had stayed up way past his bedtime to watch the hockey game.  My second thought was he was high.  I was right on the second one.  

"How high are you?"
Grumble, mumble and no clear answer as he heads to his room.  He hadn't tested. He just knew he was thirsty. 

"If you are high, bring water to your room.  Did you change that site that was over due? Do NOT bolus a correction on a dead site that was supposed to be changed DAYS ago! Change that site now!  While you are at it, change the cartridge.  It will be low by the time you fill the tubing.  You need a correction with a syringe. Input the correction in the pump and see what it will suggest."  My mind was way too tired to think about math at 1am.  

After a bit more muttering, I found out that he was 30 (540).  New site, new insulin, injection, bottle of water and he was good to go to bed.  I dozed off for about an hour or so when I was woke up yet again.  I could hear him in the washroom. I wasn't sure if he was getting sick or just using the facilities.  I got up and waited.  He just had to use the washroom so thankfully we had most likely dodged the ketone bullet but I began to think that he would be very tired the next morning! I had him retest, correct and by 3am, we were both happy to be heading off to la-la land. 

In one day he had gone from the 2 and 3's mmol (36-60 mg/dl) up to 30 (540).  His body had been through the Montezuma of roller coaster rides.  My nerves had cruised along with him. The four hour blocks were--low when he woke, high when he forgot to bolus his breakfast, good after lunch, low after supper, good later in the evening, and a colossal high during the night.  Whew!

Today is another day though and I will wait to see what each four hour block brings. I will make some more changes.  I will work to bring things back down to a kiddie roller coaster ride for a bit but puberty and Diabetes will have other ideas.  Yes, a cure will be the only way to truly get off this ride for good.

Wednesday, June 8, 2011

I am the Worrier

"Shooting at the walls of sanity
Bang, bang!
I am the worrier!" 
I know, I have completely ruined a good song but the melody kept playing in my head after I wrote the first draft of this post so now you can have it play through your head as well!
I worry. I case you have missed that from other posts, its a fact.  I can worry about anything and anyone.  I am "the worrier"! It takes nothing to set me off. My mind is incredibly creative and I really wish I could harness its abilities in ways that would add increased revenues to my life. Unfortunately, my creative mind is used to fuel my worrying nature.
I worry about my son in school, which leads me to worry about children with diabetes in schools who have parents who can't vocalize their children's needs.  I worried about how I would pay for the medical devices that my son needs which led me to the DTC and then to insulin pump funding. Worrying has some uses but it also can mess with my nerves and my life in general.

Case in point--yesterday was a dull, dreary and rainy day.  3:30pm came and went.  My son was not home from school.  3:45pm came and went but still no child.  There is a lot of construction occurring between our house and the school that my son goes to.  They must have been caught in some of that mayhem. Maybe they were stuck behind an accident that had happened along their route.  I could feel worry creeping up on me, but I tried to be reasonable.

By 4pm the reasonable part of my nature was quickly giving way to worry.  I could see them no longer being stuck in traffic because of a car crash but now my son's bus was in the crash.  I tred his cell phone.  There was no response.  My son is great at ignoring his phone, turning it off, and basically making me wonder why I spend the money on this communication tool when it is not used.

Next I pictured him injured.  The cell phone would have been beside him vibrating but he could not get to it.  Would an EMT know that he has diabetes? He had his pump but would they know what it was? It is attached to him.  What if the pump had been smashed? If he was in an accident, the pump could be damaged.  It could be ripped from his body.  Why haven't I put a medical tag back on his necklace? Why didn't I replace that MedicAlert bracelet? I know, he loses them and they have changed their fees but what if he is laying there and no one knows that he needs insulin?

At that point my phone rings.  "Mom, did you forget that I had hockey?"

Hockey was the day before and it didn't happen because of Sports Day.

"No, Mom I told you that it was rescheduled for today.  I sent you a text.  My phone died right after that though and I couldn't use it to call you."

I told him I would be there in 20 minutes.  My mind quickly settles.  I vow that I will get him a new medial charm.  I will look into updating our Medic Alert file and getting him a new necklace for the summer. As for the phone? Well he said it needed to be charged. I may have to look at the waranty on his "new" phone...yes the one that I did not get an extended waranty for last fall. Oh the joys of parenthood...and being "The Worrier"!

Tuesday, June 7, 2011

Another diagnosis

Last week I was contacted by my son's school.  They had a child in school who was recently diagnosed with Type 1 diabetes.  The principal wanted to know if they could share both the information that I had given them on schools and diabetes with the parents, as well as share my personal information with them. I said of course!

My heart broke that one more family was having to go through this.  I ached for the young child (in the primary grades was all I was told) who had to  learn how to lance his small fingers and inject his little body parts multiple times each day.

I asked my son if he had been in contact with this child.  My son is not big on children smaller than him.  They are strange creatures who remain completely foreign to him.  He does his best not to socialize with many of them so it was not surprising when he said he had no clue as to who the child could be and had not spoken to anyone.

I suggested that he try to find the kid.  I told him to ask a teacher to point the child out to him. He could go up to the little guy and tell him that he had diabetes too. He said that no one in school knows he has diabetes (big Mommy groan!).  He said if he walked up to some kid, showed him the marks on his hands from lancing them multiple times each day and showed him his pump the kid would probably go screaming in the opposite direction.  He figured going up to him would terrify the child more than diabetes itself!

For my son, being 5,6 or even 7 and having diabetes was no big deal.  It was not a source of stress. It was part of life. I couldn't seem to make him understand why it could be a little scary for a child who had lived a "normal" life up until this point and now was beginning his life with diabetes.  The entire concept was simply out of his point of reference. Diabetes, testing, blood, injections, pumps, that was all he could remember.  It was annoying but it was his life.  I found that rather sad.

Despite my best efforts, my son will continue to remain secretive about his disease.  It is his disease however and teaching him to look after himself when I am not around is more important to me than him educating or interacting with others with the disease.  I will continue to speak for both of us.  I will send the principal a link to the upcoming FFL Canada conference in case the parents are looking for some support this summer and I will learn to live with my son's indifference which may not always be a bad thing.

Sunday, June 5, 2011

Are you sure we are related?

Some days I wonder if my son and I are really related. The other day he came home and said "Guess what? I met a guy today who is 21 years old and has type 1 diabetes." 

I thought that was pretty cool. My son told me his name as if I should know him. I had no clue as to who he was.  My son informed me that he was a local actor.  I guess I am supposed to know all people with diabetes especially those who are pursuing an acting career.  Why? Because I am his mother of course!

The conversation continued...How did you know that he had diabetes?

"Well I saw tubing."

Cool! Did you show him your tubing?


Larry asked how he knew that the tubing was attached to a pump.

"Because I could see it attached to the side of his pants."

Cool! What kind of pump did he have? A Medtronic? That seems popular around here.

"I don't know."

Did you show him your pump? Did you flash your tubing and give him the "thumbs up"?


Did you start a conversation? Ask him when he was diagnosed? Compare meters? Ask him when the last time he tested was?


Did he ask about your pump? Did he say "Hey! You've got a pump too!"

"No.  He couldn't see my pump or my tubing. My pump was under my shirt attached to my pants and my hoodie was pulled down over them both.  He had no idea."

Larry and I just looked at each other. Larry told him that he should have spoken with him.  I told him, he's part of your club.  You both have diabetes. That's special.

My son looked at my like I was crazy.  He had seen another person with Type 1.  The guy was teaching them something about theatre in his English class.  My son noticed that he had a pump.  Wasn't that enough?

I guess for him it was.  I am way more obnoxious.  You know I would have asked what kind of pump he was using, how long he had been pumping? What age he was diagnosed and so on. I like to talk to these people. I like to learn.  I like to engage people who live like we do.  My son is happy to watch from the sidelines, comment and move on.  One disease and such vastly different approaches.

The next day my son came home and told me that he had seen the guy again.  He was back teaching in his English class.

"Did you talk to him about diabetes this time?"

Oh my.  I guess I will just be happy that he notices things and when he is ready to share, he will. In the meantime, I will continue to be the voice in the family.

Thursday, June 2, 2011

They Got it Right...Well Almost!

Last night I was channel surfing and came across a TV show that caught my interest.  The program had already been on for about twenty minutes but it had some actors in it that I liked so I thought I would take a peak. Within minutes my was really intrigued by the show, they were looking for a kidnapped girl who had diabetes! 

As the two police officers were headed out in hot pursuit of the alleged kidnapper, one turns to the other and states that "this could be really serious because the girl has diabetes." The other officers says that she had "Type 1 diabetes and has to have her insulin before she goes into insulin shock."  At that point I kind of went, huh?

Insulin shock is not a term that I use. I have heard it and was pretty sure it referred to a hypo. I continued to watch the show because I liked the fact that they were treating diabetes as a life threatening condition. When they found the girl and she was both very young and slim, I was even more excited.  As they wheeled her into the ambulance, the police officer yelled out that she had to have insulin right away.  I was left thinking, but they have to give her the right stuff. What sort of basal insulin is she on? Don't give her NPH! I am such a mom of a pwd! 

At that point, I basically quit watching the show but was determined to look up the term "insulin shock" in the morning.  Could I really be out to lunch or did a well-meaning show totally screw up with two little words?

This morning as I was going through my emails, I came across an article about Doug Burns.  He is the former Mr. Universe who was arrested for being drunk in public and resisting arrest when in fact he was low and trying to get some regular pop (soda for my American friends) to bring him back up. I began to read about his suit against the police department and there were those two little words again-- "insulin shock".  The article began "Douglas Burns, 50, of Cupertino, was showing signs of insulin shock and needed medical attention on the night of April 1, 2007". I knew that Mr. Burns had been low so I had to be right and insulin shock referred to having too much insulin in your body.

I still wanted to make sure so I did a quick Google search.  Sure enough Pub Med confirmed that insulin shock, hypoglycemia and low blood sugar levels were all the same thing. I was not going crazy. The media got it wrong again.  Darn!

They showed that diabetes was serious.  They stated that she had Type 1 diabetes rather than saying that she had "diabetes" or Type 2.  They used a young girl under 10.  They showed her sweating and a little out of it. They said she had to get insulin immediately or she was going to die.  The only part they had wrong was in saying so matter of factly that she would go into insulin shock because she had no insulin in her body. 

Once upon a time, this would create emails of outrage from many parents.  We would scream, yell and boycott the show.  I don't hear much of that any more (may be I am not listening in the right places). Today, I don't find myself as offended or as disappointed as I once may have been. I appreciate the effort. I am happy with the parts they got right. I hope that one day the media will get it all right but I am beginning to realize that mostly right is a decent place to start as well.

Wednesday, June 1, 2011

Roche sent us a new gadget!

About a month ago, a gentleman from Roche approached me and asked me to view a collection of videos that they had on Facebook and YouTube. They were testimonials from six Canadians living with diabetes who had tried out their new glucometer, the AccuCheck Mobile. The videos were interesting accounts of people, young and old, who were living their lives as normally as possible and testing using this new meter. 

Having lived by the motto that a child with diabetes is a child first and diabetes comes second, the videos did not offer us a lot but they were a great portrayal of life in general.  I had no problem sharing the videos both on my website and then my Facebook  page. I was however personally curious about this "strip-less" meter.  

Roche obviously knew that many of us who live with diabetes are gadget junkies because I was offered a meter to try out and see what we thought.  I love free and I really love free diabetes stuff so my son and I were eager to check this meter out.  

His first ever meter was a Roche meter.  I was not overly fussy about its accuracy and we eventually moved on to try other meters from different companies.  My son however always liked Roche.  When the AccuChek Compact came out, he was their biggest fan.  I still had reservations about its accuracy however and so we did not continue to use that one either. 

Before our new meter arrived, I decided to see if others had ever heard of this new meter and what the general consensus was.  People had heard of it and there were a variety of responses. Many did like the no strip feature (I was still trying to wrap my head around this).  Others liked that everything was kept together.  There was a group that had issues with accuracy and found that it had too many errors because blood blocked its sensor.  This had been a complaint of mine on the Compact as well. Blood on a glass that had to be cleaned often because a young boy liked to put enough blood on a test strip to feed a vampire for a week. I wondered how the Mobile would work for us but was not overly optimistic. 

It took a little while but we eventually got the meter.  Two hundred tests later, my son and I sat down and discussed our likes and dislikes about the new AccuChek Mobile. 

We both loved that fact that there are no test strips! It uses what appears to be a strip of paper (I know its not paper but that's what it looks like to me).  The blood is applied to it and a reading happens.  This is awesome! No test strips in the car, in the bed, in the kitchen, in the bathroom, in the garden, well you know the routine. 

My son loved the fact that it was self contained.  He loves just grabbing the meter and going.  For me, this means that I don't have to remind his to grab his meter, lancing devise and test strips. Its all there. 

He also thinks that all of the features are "cool".  You can note when the readings took place (before/after meals, etc).  It has a great memory display and gives you averages for days or overall. I am sure that there are a lot of other features that I have yet to figure out. There seems to be a lot in this meter.

We both liked the fact that readings were very easy to see. The brightly lit screen is definitely user friendly and at 3 am I really appreciate that. 

The fact that it uses AAA batteries is also a huge plus.  As frequent testers, battery life is not always what we would hope so knowing that we can throw a regular battery in there and go is fabulous!

There were a few problems that we did find though. 

We would love it if the test strip section also had a back light. 

We were disappointed to find out that our multi-clicks lancets did not fit this new meter's lancing device.  I have a box of 100 canisters that are no good to us to use with this one. 

Being more technologically challenged than my son, I found that it took me a bit to figure out how to turn the meter off. It turns out that there is a lengthy process you can go through moving through the onscreen menu or you can simply hold the big black button down for a second or two and it powers down. 

We also found it a bit noisy as it changes strips.  My son thinks that this is actually a positive but I am not so sure. 

A much bigger issue was the fact that we had randomly appearing "E3" errors.  We still have to look up to see what that error meant but at 3 am, when you get three of those errors in a row before a reading...well its annoying.  

He also had one test that appeared as 1.0mmol (18).  I asked why he was so low and then the next reading, just minutes later was 16 (290).  It turned out that the 1 was with no blood. It just decided that he had applied blood and guessed a reading.  My son said "I guess it guessed wrong!" Despite that error, I have not found the meter to be overly inaccurate.  It seems to be in keeping with how he feels as well as with readings on other meters. 

All in all, I personally would give this meter a three star rating out of five. It works well enough, takes a bit to get used to and the lancing device issue is annoying but it seems to be a good meter.  My son is a bit more generous. He loves this meter and is waiting for me to get more test strips for it.  He gave the meter a four star rating. He hates the random errors but the other features definitely make this a meter that he wants to keep using. I may have to see about getting a second one for school in the fall.