Diabetes Advocacy

Disability Tax Credit 101

2012-02-08T12:25:00.000-03:30

Its that time of the year again, the time when the tax man comes to call and we scurry to find any way to hang onto our hard earned dollars that we can. This is also the time of year when I find myself inundated with many questions regarding the Disability Tax Credit (DTC).

I am not an accountant. I am not a lawyer. I am a mother who has been dealing with this issue since the beginning of time (or at least early 2000). Back then, the DTC was given to some people with diabetes and denied to others. Eventually it was given to those using insulin pumps but not those on injections. Finally after a long battle, a lot of letters and presentations, this ruling was changed and the discrimination faced by people living with diabetes was removed.

The Disability Tax Credit (DTC) is given to people who are unable to perform the "basic acts of daily living" OR who require life sustaining therapy. While the argument as been made that people with diabetes are not able to perform the basic acts of daily living, the real case has been made that they require life sustaining therapy. If they do not take insulin they die. Its very simple.

So what is the tax credit and why do you want it? Well it gets you money back on your taxes! Again, I am not an accountant but I think of it as my own extra RRSP or spouse to deduct off of my taxable income. If you pay in any income tax, you will see a bit more money coming back to you.

If you have no income or very little income, this credit may still be important for you. It may reduce your income to the point that you now qualify for the GST. If you have a child with diabetes, it will mean that he/she now qualifies for a disabled child benefit which adds approximately another $100 to your monthly CTB.
There are still many questions from people who are not sure if they qualify. I will attempt to answer a few of them to the best of my limited abilities....

1. The Disability Tax Credit? I am not disabled! I don't want my child labelled this way either. You are not claiming that you or your loved on is "disabled". By applying for this credit, you are stating that you or your loved one requires "life sustaining therapy" to stay alive. As I have said, no insulin equals no life.

2. Children under 14 who have been diagnosed with type 1 diabetes qualify for the tax credit. It is that simple. The time spent on care by the child and parent is felt to easily total over 14 hours. A signature from your doctor regarding diagnosis will entitle you to the credit.  While reducing your taxable income, this credit will also entitle you to the Disable Child Tax Benefit as well as the CTB you may already be receiving.

3. My son is 16.  Does he still qualify? Yes, he does. If he has any developmental issues, this definitely means he qualifies and it should be noted on the T2201. If he does not have developmental issues, but he still tests regularly, injects or boluses and intensively manages his diabetes care, then he still requires life sustaining therapy and meets the time requirements.

4. But I have Type 2 diabetes. Do I qualify? This one is a little trickier. If you are no longer producing any insulin and must take insulin injections multiple times per day or use an insulin pump, then you may qualify for the DTC. If your diabetes is still managed through diet, exercise or pills, you will not qualify.

5. I don't know what type of diabetes I have but I have been using needles for the past 10 years.  Again, as long as you are using multiple daily injections, logging, and testing, you most likely will qualify for the DTC.

6. I was told that you can't count recovery from lows. That is right. You can't but CRA does recognize that you can make errors in your care. I have a lengthy list of how time is calculated in accordance to CRA guidelines. If you feel that you do these things, then you should easily qualify for the DTC.

Your doctor must be very aware of what qualifies as therapy and how you manage your time. Your doctor now is your key to approval. If he or she understands the time you invest in keeping yourself healthy and tells CRA that, then you will get your tax credit.

7. What is the Disability Tax Credit and why do I care about getting it? Again, it is a credit that gets you money back on your taxes! I am not an accountant but I have come to think of it as my own extra RRSP or spouse to deduct. This is an amount that comes off of your taxable income before anything else. If you pay in any income tax, you will see more money coming back to you.
Even if you have no income or very little income, this credit can still be important for you. It may reduce your income to the point that you now qualify for the GST. If you have a child with diabetes, remember that it will mean that he/she now qualifies for a disabled child benefit which adds approximately another $100 to your monthly CTB.

8. How long does the DTC last? It depends on the person processing your file. Yes, its that arbitrary. I have heard of families with two people diagnosed with Type 1 diabetes who both applied for the DTC

The Disability Tax Credit is a tax credit that you receive because you put so much work into keeping yourself of your loved one alive. Life sustaining therapy is a real part of diabetes. Injecting, bolusing, testing, calculating is all part and parcel of what keeps us or our loved ones alive. These are not tasks that someone without diabetes has to perform.
If you have any further questions ask your diabetes team, your accountant or contact me and I will do what I can to point you in the right direction.

That's a lot of insulin!

2012-02-07T13:35:00.000-03:30

"Twenty-nine units! Wow! That's a lot of insulin."

"Its what your body needs for what you ate. If you are worried that its too much, you will find out when you test in a few hours."

This was our conversation after breakfast the other morning. My son had had his usual stack of pancakes. His carb to insulin ratio in the early morning hours is something like one unit of insulin for every 5 grams of carbohydrates, so 100 grams of pancakes equals a LOT of insulin.

I never heard any complaints when he came home later that day suggesting that there was an error or he was low. I think he just realized that he uses way more insulin than he once did. He also eats WAY more food than he once did!

He is a teen. He began this journey when he was a toddler. Way back in time, he would not use 29 units of insulin in a day. When we first began pumping, I would fill his pump to about 150 units and still throw out insulin after a week.

I remember when his basal rates moved from .1 unit per hour to .5 and then 1.0 units. I was terrified. I had to keep reminding myself that this is what his body needs. If he had an internal pancreas, it would be pumping out gallons of insulin as well, its just that I would not have the visual to go with it.

As he grew, his carb to insulin ratios were no longer 1:40 or even 1:20. He now sees ratios of 1:5 to 1:15. Insulin sensitivity is not even a consideration any more but thankfully insulin resistance has not become as much of a problem as it could have been either.

When my son first began to see major changes in his insulin needs, I spoke up to friends and said I was concerned. A wonderful woman who lives with diabetes laughed at me and reminded me that my son was no longer two. He was becoming a man and that journey would be filled with many more empty insulin vials before we were through!

It was the stress

2012-02-04T17:18:00.000-03:30

Last night we were sitting around in the living room enjoying a movie and a few laughs. My son pulled out his meter to test. He was relatively high and began to scroll through his meter. He soon realized that besides tagging if the reading was before or after a meal, you could also say that you were ill, exercising or stressed.

He looked at me and said "I'm 16.9 (305). I think it was the stress that did it."

"Stress?? We are watching a movie and you are sitting on the couch. What stress? You have no stress."

"No. I'm positive that I am high because of stress. Look right here. See below the reading? Its says "stress". The high must has occurred because of stress!"

Ugh! Yes, this is what I have to deal with but it does not end there. This morning he woke up and again was running a little high. He again told me that it was because of stress. I suggested it was because he didn't change his site the night before. Again, he swore that it was stress.

I suggested that he needed to go outside and shovel out the backdoor which was snowed in. He said that he couldn't. Snow makes him low and being stressed already he really shouldn't do anything that would add further stress to his body. I reminded him that exercise was a great form of stress relief and it would also help to lower his high bg level.

Unable to win this battle, he changed the site and then shoveled out our backdoor.

Teens and gadgets...they can be a dangerous combination for parents' stress levels! I will however give him a A for creativity.

Confessions of a D-Momma

2012-02-02T15:51:00.000-03:30

At the beginning of the year I posted about people living with diabetes and depression and/or burnout. As parents, we ache for our children going through this each day and do our best to relieve some of their burden. Many parents go through a depression or period of mourning at diagnosis but I wonder how many feel that they may have developed depression in part because of diabetes moving into their homes?

When my son was diagnosed, it took me months before I sat and cried. Initially I was so happy that he was alive that I didn't think beyond that. As he grew stronger, my focus was on learning and the fear of "what if". After months of testing and injecting, it hit me one night...I would never make him better. I would continue this routine until he would do it himself but he would not be cured. I sat alone in the dark and cried.

I moved on after that. I took control where I could because diabetes had left other parts of our lives so out of control. I found an amazing online support group. I met some local people who became friends. They understood my life and it made me feel less alone. I plowed through and worked on a variety of issues. I tackled the federal government and had them change the Disability Tax Credit, making it more fair for people with diabetes. I joined groups and committees. I advocated for change in a variety of areas. I organized diabetes walks, created a website and eventually began this blog.

Despite all of these great things and the encouragement of many, I always had a sense that I was not doing enough. I was inadequate. Change was slow. Rewards were gifts to the heart. Because most of what I did was volunteer, there was very little, if any, financial reward. Money is what makes the world go around and if you have no financial worth then what is your value? People would tell me that I should "get a life". I should "get over it". I needed to "get a real job".
In my heart, I know my value. I know what I have done as a parent, a mother and an advocate are very important. These comments still haunt me however. They still make me wonder. I know the good things that I have done and continue to do. I see my son's A1c when he is with me and I know that I am important to his health. I know the real value of that gift When I begin to forget my worth, I often receive amazing emails and comments that truly light up my day. The value of these comments and the friendships I have made are well beyond a financial measure to me.

And yet there are some days this knowledge is still not enough to see me through to the next day. The demons, the comments, the fears, the exhaustion--they are all there in the back of my head. They lurk, telling me that I am not good enough--as a pancreas, as a parent, as a person. The depression takes over. A black cloud hovers overhead.

Its a cloud that I cannot quite seem to easily escape. I look at myself and ask, what gives? I have a lot of blessings in my life. I have a lot to be thankful for. What is my problem?

I wish I knew. I have to fix it. I have seen many victories from many battles over the years--both personal and in the diabetes world. I should be happy with my successes. I should not be sad, depressed, blue, fearful or lack any self-worth. Perhaps its a shift that I need to make within me--to focus on the positive and push back the depression and feelings of inadequacy.
Diabetes has taken over a lot of our lives. It has brought many changes and has brought me many blessings. It has changed me. It has enhanced me. It seems to have also brought a friend called depression but I won't let it win any more than I will let diabetes win.

I should have run over a meter

2012-02-01T09:57:00.000-03:30

Last week was a bit of a muddle. I injured my foot and spent most of the week sitting on the couch going crazy. I hate being laid up but my foot was not happy if I used it. As I sat, self-absorbed and frustrated, I really did not pay a lot of attention to diabetes.

I yelled out the normal "Did you test?". I asked what he bolused and helped to calculate meals. I hobbled out of bed each night to test. I failed at Reading Review Thursday and swore we would do it the next night, and the next night, and so on. I didn't keep track of when the next site change was due and sadly trusted my 14 year old to actually pay attention to the alert on his pump. Yes, I majorly failed as a parent of a child with diabetes and diabetes got its revenge.

I finally looked at my son's pump after a bolus and decided to check when the next site change was due. My son quickly grabbed his pump back and attempted to escape my limited grasp. I somehow hauled him back and reviewed the screens. The site change was FOUR days over due! I could not breathe. I wanted to beat him with his tubing. What was he thinking? Or not thinking? What the heck was I going to do to get him to remember??

I told him to change his site NOW! No games, no chats, no text. March his butt in his room and change that site before I put one in his tush! I was doing my best to breathe and allow him to live another day. He had been high for the past few nights...now I knew why.

I kicked myself. I should not have allowed things to slide. I should have been on top of things. I have been slack on a lot lately. I had to pull myself together! The next thing was to review the readings.

I had him bring out his meters and a sheet of paper. We were going to get down to brass tacks and review things.

"Mom, we really can't make a lot of changes. My site was really old so the readings won't be accurate."

Thanks! I needed to be reminded of how we failed! I told him that I wanted to check things anyway. I looked at the first meter. It was his USB one. This meter is still so neat but I couldn't remember how we reviewed readings without sticking it into a computer. Finally we figured it out and I began my review. I loved the highlighted highs and lows. The readings were everywhere but the display was so cool that I was oblivious to much else.

Next I moved onto the school meter. There were no readings. None. Nothing. Was he using a different meter? He brought out a second one. It had a few readings but something was seriously wrong. He swore he tested. I checked the dates on the meters. We have a real issue with One touch Mini's changing the date and time. I know that they are supposed to be the most accurate meter on the market but this problem drives me insane.

The meter was off...like by years! It had the time as two hours later than it should be, the year was 2010 and the dates was October. How the heck was I supposed to go back and figure out what he really was and when? He had missed tests so I could not really even take three tests each day and guesstimate. I was frustrated.

We made a small change and I told him we were going to have to be way more on top of this. He had to test at school.  We had a problem but I couldn't solve it without the data of those tests.

As he left, I wanted to scream at myself. How could I be so slack? He is only 14 and he is a teen. He forgets. He gets lazy. If I was on top of this days ago, I would have information and would have known that the meters were off. I wanted to cry. I wanted to yell. I should have run over a meter. That just may have helped.

Instead, I promised myself that today will be better. I have circled his next site change on the calendar. I will try to be more proactive. I will work harder to be a better pancreas guide. I have to. We aren't allowed to quit.

Guest blog...Diabetes Impact on the Mental Wellness of the Elderly

2012-01-31T11:38:00.000-03:30

I was recently contacted by Jenna Walters, an English major with a passion for diabetes. We know that there is a strong connection between diabetes and depression. Jenna speaks to the issue of the impact on the mental wellness of the elderly.

Thanks Jenna!

Once diabetes develops in a person, it becomes a life-long medical condition that requires an effective management plan. Most people are familiar with the negative health implications associated with diabetes, which include an increased risk of stroke, heart attack and kidney disease. However, few people realize that diabetes can contribute to various mental conditions, especially in seniors. Regular health screening for diabetes increases the chances of early diagnosis and reduces its impact on mental wellness.

Mental Illnesses Linked to Elderly Diabetics

Depression is a common mental condition that occurs synonymously with diabetes. In some patients, the diagnosis of diabetes contributes to overwhelming emotions and stress leading to a depressed mental state. Depression in diabetics may also be linked to some medications used for diabetes treatment, metabolic processes or the sudden realization of a life-altering medical condition.

Results of a scientific study published in the September 20, 2011 issue of Neurology, an American Academy of Neurology publication, indicate an increased risk of Alzheimer’s disease and other dementia conditions in diabetics. Type 2 diabetes and its connection to the development of Alzheimer’s disease is not entirely understood. It is believed that uncontrolled blood glucose levels in elderly diabetics causes a condition known as vascular dementia, caused by blood vessel damage in the brain. This damage to the brain’s blood vessels contributes to mild cognitive impairment, MCI, a phase of mental and cognitive changes that occur between normal aging and more serious conditions such as dementia.

Improving Mental Wellness in Elderly Diabetics

An active lifestyle has been found to improve overall mental wellness of cancer sufferers, such as peritoneal mesothelioma, as well as in elderly diabetics. Studies indicate diabetics who participate in 30 to 60 minutes of aerobic or a mix of strength training and aerobic exercises, three to five times per week, decrease their risk of mental disease and complications from diabetes. Regular exercise increases mental alertness and improves judgment and thinking skills as a person ages.

Maintain a healthy diet and reduce blood sugar spikes and fallouts. Drastic swings in blood glucose levels have a direct impact on a person’s mood. Extremely high or low readings lead to irritability, loss of concentration and decreased mental sharpness. Use a balanced diet of lean proteins, fiber-rich foods, vegetables, whole-grains and complex carbohydrates to combat food’s affect on glucose levels and mood.

Follow a doctor’s treatment plan for diabetes and mental illness. Discuss symptoms of depression or other mental changes with a healthcare provider. Identifying the source of the symptoms helps treat the underlying cause and improves the chances of successful treatment. Diabetics in a successful treatment regimen tend to manage their diabetes better than those with uncontrolled mental diseases. Good mental health improves a diabetic’s ability to focus on managing the disease through diet, medications and exercise.

Who knew? I Should have.

2012-01-28T14:59:00.000-03:30

I mentioned on Monday that I was writing a letter to our provincial government in an attempt to expand our insulin pump program. I had created a group on Facebook as a way to unite people to get this done. I knew from past experience that the more people involved, the more letters that were written, the greater our chances of seeing change in the 2012 spring budget.

I invited a few friends to this group. I asked them to invite a few friends. We were a small group. With the exception of me posting encouragement, I did not see a lot of activity. Was anyone paying attention? Had everyone given up before we started?

As I worked on a draft letter, a few people began to comment. There were thanks for getting this together. There was an interest in seeing change. Despite this I still was wary. Could we create change? Could we at least mount a real campaign in support of this?

I continued to work on my letter. I read studies. I researched dollar amounts. I took notes and prayed that I could fit everything into some sort of order that would get the facts out there and would keep the reader's interest.

I sent a copy of the letter to the budget committee. I posted what I was doing here and on other sites and groups that I belonged to. I emailed some people and hoped that they too would help. I continued to rally my Facebook friends and family members to get involved.

I didn't expect a lot.

In the first day, a person that I had contacted said that five letters had been forwarded through themselves and friends. Other people began to say that they too had forwarded the letter on. Soon we had at least 20 copies of the letter sent out and it had only been day one. People were getting out seven and eight copies in a day thanks to family, friends and their own dedication. They were spreading the word.

Yesterday the work week ended. I have no idea as to how many letters were sent out. I had emails from people in other provinces who wanted to use my letter to help out in their area. I had people without diabetes who have followed my ramblings who wanted to obtain a copy of the letter and show their support. I was truly touched.

I often worry that I am not doing enough. I fear that my time as past. I think that perhaps I need to just give it all up. What difference does it really make? I am starting to see the difference.

I can't say for certain that we will see a change in this budget. I can say that we have created a very strong case. We have brought a large number of people together on this issue and we are not done! Letters and emails have until February 13th to be in. We will see many more submissions made by that time. Our voice is strong. I am truly amazed and privileged to have been able to be apart of such a wonderful group.

Let is Snow

2012-01-27T08:59:00.000-03:30

We have established that my son's body has an aversion to snow. He loves snow. He loves to snowmobile and enjoy the cold crisp air. Diabetes on the other hand does not like snow...or perhaps its just allergic to the physical work that snow brings.

For years, whenever it has been snowing and I made my son go outside to shovel he would be low. No, not after the activity but long before it has started! Before he can put on his boots, he will feel shaky, test and be low! It has always drove me insane.

This winter, the snow was piling up. Larry was outside clearing the driveway. I could hear my son head into the kitchen, open and close the fridge door, and then head back to his room. Five minutes later Larry came in and asked him to go outside and clear the steps. He couldn't. He was low--in the two's (low 40s). He did come back up, had a cereal bar for good measure and got the job done but Diabetes made sure he was low first.

A few days later, he was again asked to go outside. Yep, he was low before he put on his mitts!

"Why does your body hate snow?"

"I think it just feels that I really shouldn't be doing this kind of work. It thinks that snow should be reserved for skidooing and not manual labor."

Funny boy! Diabetes or not, he does his share of work around the house and that includes shoveling snow when needed. Diabetes will just have to get used to it!

My Purse

2012-01-25T11:31:00.001-03:30

Since its "wordless Wednesday" I figured that a picture of just some of the contents of my purse would speak volumes for me.

Strength in numbers

2012-01-24T12:12:00.000-03:30

Its that time of the year again...pre-budget time in Newfoundland and Labrador. This means that its our opportunity to try and convince the current provincial government that money spent on insulin pump therapy now will save them money in both the short and long term.

Newfoundland and Labrador is one of the better places to live in if you have diabetes. They cover insulin pumps for those people with Type 1 diabetes who are under the age of 25. This is better than those people living in Alberta who have no provincial coverage but is not as good as those living in Ontario.

Each year, I have worked to see this change. First to see pumps covered at all, then accepting the increase to 25 and now...well I am done with crumbs and I want the entire cookie for people with diabetes in this province!

I have spent the past few weeks researching and reading. I took that information and spelled out exactly why we need the insulin pump program expanded to include all people with diabetes and continuous glucose monitors.

Sadly the government only cares so much about the quality of life issues. They only care so much about how much easier it will make your life. Their main concern is how much it will cost them. They want bottom line so this year I gave it to them.

With the help of some great studies, I was able to show the cost of less than optimal control on the health care system. I was able to show them the dollar value of a person working versus someone who has had to leave the workforce because of diabetes related complications. I showed how money was saved and funds could be re-routed by adopting a more expansive program.

I am only one person though. I have shared the document with a group of people who want to see change. I have shared it with other people that I felt would be interested in seeing this happen. I have asked these people to share with their families and friends. Every person who shares this plea with the provincial government brings us that much closer to seeing real change. Never doubt the value of public pressure...even when the government is crying broke.

If you live in Newfoundland and Labrador, or know someone who does, please send your own letter or email me for a copy of the letter that I have sent. There truly is strength in numbers. Together we can make a difference! but hurry! The submission deadline is February 13th.

"Good" is not a number

2012-01-23T08:49:00.000-03:30

Does this happen in your house?

"What was your reading?"

"Good"

"No, what was your reading?"

"I don't know but it was good."

Arggghhhh!! "Good is not a number. Good is a four letter word. Yes, "four" is a number but good does not necessarily mean "four". "

At this point, my son usually looks at me like I am completely insane. If I am lucky he has figured out that I would like to hear a real blood glucose reading and not his generalization of his take on his reading.

"10.0" (180)

"That is not good. That is actually a bit high since you just woke up and should technically be under 7."

"I like it. Its good for me. I think 10 is a good number."

"And that is why good is not a number. What you define as good and what I define as good are not the same."

The teen years can be trying enough, but a teen with diabetes? Well he may well tip my sanity scale! Time to buy some more hair dye to cope with the dozen new grey hairs he just caused me.

Update after...Hating Five

2012-01-21T12:00:00.000-03:30

I was driving in the car with my youngest son. He yawned and I asked if he was tired.

"Why?"

"Well, I thought you might be tired since I was up all night wondering when you were going to go low. You hovered between 4 and 5 all night. I wasn't sure what to do and didn't want to send you high so I ended up awake for most of the night. You finally did go low, I gave you a juice and things eventually worked out."

"Next time give me a sandwich."

"What???"

"Next time I'm low. Don't worry about the juice, I would rather have a sandwich."

Oh my! Teen boys and food! Its not like I haven't fed him a sandwich while he slept before but that was back in the days of injections and NPH. Nowadays its juice, gel or tablets and some sleep.

After this nightmare night, as I mentioned, I had to decide if I should decrease the basal rate or give it one more shot. We had a huge dumping of snow that day and my son had been out shoveling for a few hours. When the evening came, I had to decide what to do. I went with the wait and see approach. In hindsight, it wasn't my most brilliant decision but this time he was over 7 (130ish) before going to bed so I thought I had a lot more wiggle room.

Wrong! Two o'clock in the morning saw him dropping again. There was no sandwich. I found some regular pop and decreased his basal rate. I also changed the previous rate back down to where it was to begin with. I was not taking any more chances!

Why I hate Five

2012-01-20T10:47:00.000-03:30

Its been three Thursdays and we are still doing the "Reading Review Thursdays"! Yesterday was actually a bit of a fluke. My son had been having high reading overnight for the past three days. I knew that it was time to make a change. I decided that it was easiest to look at the rest of his readings then as well. As I was writing down dates, I realized that it was Thursday! I was right on schedule. Yeah me!

Yes, I need a life and am a little sleep deprived. You see, despite being high for three nights (and I mean close to 20 or 360 for my American pals) my son was perfect to on the low side all night long last night.

After our pump tweaking, we sat at the kitchen table and chatted while he drank a Tim Horton's smoothie. He was 4.5(81) before he started. He then ate two Eggo's as well. I felt that he would soon be running a lot higher and my basal changes came just in time!

Erring on the side of caution however, about 20 minutes after he went to bed I had him test again. He was 4.2 (75)! Crap! I sent him to the kitchen to chug a glass of juice.

"Should I stay up and retest because I am low?"
"Well, you aren't technically low. You are just in a range that I really don't like you to go to sleep at. The juice should cover it. You have school tomorrow, get some rest and I will check later."

I checked him a few hours later and he was right around 5 (90). Was he going to go up or drop? I was not going to get any sleep. I hate these nights--no clear low but clearly not safe yet either. I didn't want to add glucose and send him too high but was it safe to leave him? Would he stay around 5? Could I be that lucky? My mind would continue to race like this all night long.

I slept for another hour but I had to get up and check again. He was dropping. At 4.2(75) I gave him juice, grabbed my book and waited. By 4am, he was back up to 5.6 (101) and I could sleep for another couple of hours. By 6am I was up again but he was finally up over my favorite number 6 and had climbed to 8.6(155). A bit of peace at last!!

Today I have to decide if I keep the basal rates at their new higher level and risk a repeat performance (although with a little knowledge, a temporary basal would be added to the mix if things began to tank) or if I go back to the old settings and assume that the highs were site related. Decisions, decisions. Just another night on the Diabetes Roller coaster.

Two..its not so terrible anymore

2012-01-18T14:14:00.001-03:30

For years I couldn't look at two year olds for more than a few minutes. My heart would break when I realized how truly small they were. I would look at the tiny fingers with no marks on them and want to cry.

I have had to get over this. Yes, my son was that small once. Yes, what he had to endure was not what a two year old should experience but he is alive and healthy today. He still goes through things that a teen shouldn't have to think about either but that is our life and we have to live it.

I have a precious little two year old girl in my life. I am able to look at her tiny fingers and simply see the amazing things that she creates with them and how she uses them to pull her mother's face close as she kisses her. Every once in a while, I still slip back.

Yesterday she came for a visit. We nursed her dolls back to health, caught up on Dora, played with play dough and colored a few pictures. All of that work required a snack! She sat down to the table and chose what she wanted to eat. She ate the amount that she wanted and was blissfully happy.

For just a moment, I looked at her cute little face and realized that she was the exact same age now as my son was when he was diagnosed with type 1 diabetes. I didn't have to count her crackers. I didn't have to measure out her milk. She would not be forced to eat when she wasn't hungry. She would not have to learn about "cow-bo-hi-dwates" until she was an adult and only then if she chose.

The thoughts of diabetes faded quickly however as she showed me her mouth filled with food and laughed at my feigned disgust. Its a game we have been playing for months--I "see" the food all mushed in her mouth, she swallows and then tells me that she sent it to her tummy and shows me that.

Diabetes no longer robs me of these moments but it still lurks in the background taking me back and making me grateful for healthy pancreases in those I love and more.

How much is it?

2012-01-16T09:35:00.000-03:30

Friday night I had to run out and on my way home I stopped into Dairy Queen. We don't often have ice-cream in the house and despite living near many fast food places, don't often frequent them. Friday night we deserved a treat!

I ordered three blizzards and headed home. I knew that I would be met by two happy young men. I was right. I had chose the right flavors for each child. The next thing was to figure out the carbs for my son.

I asked him "How much do you think that is?"

His friend instantly replied, "They cost a lot!"

I laughed to myself. We were looking at the carb count and that was the furthest thing from this boy's young mind. That was great!

I smiled at my son and pulled out my phone to search for the carbs. We established it was around 64 grams. The other boy had now realized what we were talking about and was shocked to know that his ice-cream was so high in energy. I know it didn't diminish the flavor for any of us!

We all enjoyed our treat and it was refreshing to see a "diabetes free" perspective on a question my son and I ask each other numerous times each day.

The Book of Better

2012-01-13T12:18:00.000-03:30

A few months ago I received an email from a person claiming to be a publisher. He wanted me to read a book by someone I had never heard of. I did a bit of enquiring to see if this was for real or they would be later calling asking me to send my bank account information to Pakistan.

It turned out that it was all on the up and up. They just really wanted to send me two of my favorite things--something free and something to read! I gave them an address to send the book and promised I would mention it one day here.

After Christmas and a few personal issues, I finally made it through the book. Please don't think that the book was a struggle. Actually I was pleasantly surprised to find that I really enjoyed it. Making time to read was my personal challenge.

Like any other non-fiction book that I read, I read this one with a check-out receipt nearby. I use the receipt to rip and mark pages that strike me for some reason. This book got eight of my fancy bookmarks. Not bad!

Chuck Eichten provides a very basic explanation of what diabetes is. We have all used the car model whereby we tell people that glucose is the fuel that makes the body run just like gas is the fuel that makes a car run. The book of Better. Life with diabetes can't be perfect Make it better, suggests that diabetes is "as if we sprayed gas all over the car but never opened the gas cap." I thought that was a great visual for people who have no clue.

Mr. Eichten uses humour to get his point across in a wonderful way. He is matter fact about the reality that we are simply people trying to a job we were not taught to do...be a pancreas. We can only do our best and aim for "better".

The book also makes a lot of use of color. Personally that is a problem as well as a positive feature. I love the boldness in such pages as 110, when he notes that "In 1921, the life expectancy of a person diagnosed with diabetes was less than 12 months. In 1922, life expectancy was more than 12 years. In 1921, if you had diabetes you died. In 1922, you lived." The choice of black, white and yellow poses a real problem when you are trying to read at night. Between aging eyes and colored print, I often missed key points due to the frustration of not being able to properly see what I was reading.

I also appreciate Mr. Eichten's pro-pumping take. I personally agree that pumping is the best method of insulin delivery. I love, love his illustration of the number of injections (portrayed by small yellow dots) you would take in ten years versus the small yellow box of infusion set insertions. I like that he notes financial restraints may be a huge hurdle for many. He turns to governments and pump companies to change this.

The book of Better. Life with diabetes can't be perfect Make it better takes a stab at the issue of children with diabetes. I agree with him to a degree. Our children are a lot more flexible than we think. As parents, we are a lot less flexible than we could be. I think that some children still have huge issues with this lifestyle change but again, agree that ultimately children learn from parents. I have always said that my job as a parent of a child with diabetes is to learn all I can and then teach all I can to my son. His job is to use these tools wisely.

All in all the book is great. If you want a touch of humour to give you a kick in the right direction, The book of Better. Life with diabetes can't be perfect Make it better may be just what you are looking for. If you are a little older, I would advise reading the book during the day when natural light is plentiful to get the most out of what it has to offer.

Thank you Jonathan Lazzara for contacting me and thanks to Chuck Eichten for tackling the serious issue of life with diabetes with the right touch of humour!

What if I met an intruder at 3am?

2012-01-12T09:18:00.000-03:30

Last night I was reading a murder mystery novel. The bad guy was lurking outside of a house waiting to break in. It was the middle of the night and he noted that people slept the most sound between 3 and 5 in the morning.

I started to laugh. I wondered if he had made sure that Diabetes did not live in the house first? I am constantly up and prowling around between those times. I have, on more than one occasion thought about the what if... You know, the what if someone was in your house and you ran into them as you were going to test.

The more I thought about it, the funnier it became. If I ran into someone in the house I would most likely have a heart attack. I would be freaked right out of my usual middle of the night stupor that sees me stumble into my son's room praying that I don't have to fully wake and think on a nightly basis. Seeing someone else up in the house would mess with that big time!

I then thought of the intruder who was in my house. The trauma that they would sustain after finding someone wandering around in a house they assumed to be asleep would definitely be significant. Worse than that however, would be the fright that they would receive after seeing me stumbling around with my hair standing on end, no make up, and in my fuzzy red housecoat.

The upside is that the police would most likely easily catch the burglar. I would have shocked him so much I expect he would faint or go screaming off into the night!

Ah the things we can think of in our sleep deprived states.

Diabetes Boot Camp...Revisited

2012-01-09T13:05:00.001-03:30

In March of 2009, I pondered the idea of a diabetes "boot camp". I had mentioned the idea in previous posts as an option for a non-compliant teen but began to think about it in a bit more of a serious tone at that point. I wondered if one could truly create a place for learning that was not a supportive atmosphere but a place for tough love?

So many people think of diabetes as not that big of a deal. We often hear of teens who just can't be bothered. There are people with Type 2 who do not take the disease seriously and there are the adults with Type 1 who are just burnt out and can't get up the energy to fuss any more. Could I create something to help these people had been my question.

Over the years, this remains my most popular post. Comments are still coming in and my mind is still wondering, thinking and inquiring. As some of you know, I am a big supporter of the CWD Friends for Life Conferences. I am on staff at the Canadian conferences and tell anyone and everyone that they should go to a conference. They are vital to many but there are a few who arrive desperate for their child to "get it". They hope that the interactions will be the magic pill that they need for their child to focus and take care of themselves. I wondered if a more harsh approach would be best.

These teens often shrug their shoulders and skip vital sessions. They are not interested in making new friends and block out attempts to get through to them. Would a harsh approach work? What would a harsh approach look like? How could you get results like "Beyond Scared Straight" but for a disease?

What about type 2s? How do you get to them? I think that in some respects they would be easier than teens and in others they would be a lot harder to reach. Someone suggested learning sessions with or without your partner. I think that would be helpful. Adults know that they are going to die. They can be shown that they are putting themselves on the fast track by pretending that they do not have a serious illness.

That leaves adults with Type 1. They know the drill. They may even know what to do but they need a kick. They are living with depression or burnout and they need help. A butt kicking approach could be successful but with a lot of support thrown in once they decide to move forward.

Diabetes boot camps do exist. I have seen a few posted that are directed at primary care providers. There were even one for people living with diabetes but I did not see anything along the lines of what is in my head. What is that? Well its a very fragmented idea at the moment. I see three very different needs. I see the need for specialized experts who are also very caring individuals. I see the need for sponsors to be involved and the support of diabetes organizations. I see exercise as being important but so are many other areas. I see intensity and education balanced with compassion and understanding.

I invite you to re-read the old Boot Camp post. I also would love to hear what you think on the subject. What would you want to see? Do you know people that could use this approach? Could it be virtual or should it be only a physical location(s)? What problems or benefits do you see? Leave a comment or email me. I would love to hear from you as I seriously begin to revisit this concept in 2012.

Reading Review Thursdays

2012-01-06T16:25:00.000-03:30

Despite pretty good A1c's, and a long standing obsession with logging, we have become very slack. As I have allowed my son to take over more and more of his disease, logging has become a thing of the past. He hates to log. Asking him to do it was worse than asking him to clean his room. I knew that he would never, ever, never log when he grew up and moved out on his own so why was I torturing myself?

They say that when you are raising children, you need to pick your battles. For years, I saw this as a very important battle. It had to do with the health of my son. Analyzing trends was important. As I have gotten older and more tired, my perspective has changed. I still look at trends but now I bounce more off of him.
"How are your lunch time readings?"
"Do you find that you are high before going to bed?"

and in return I get...
"Mom, that high before supper was because I just grabbed an apple a half hour ago."
"Mom, I forgot to bolus that bowl of cereal before bed."
"Mom, I think I over guesstimated that smoothie."

This means that I have a general idea of what is going on and then ask if we need to make changes. Now remembering full well that he had five days of "in range" readings over the holidays that included a 28, I only believe him so much. This has led me to rip off the "chicken Thursday" guy and create "Reading Review Thursday". It is the day when my son has to pass in all of his meters and we review. I have a piece of log paper. I do the logging (its a lot less painful that way). When I see bumps, I ask questions and look at his pump.

I have "Reading Review Thursdays" marked on my calendar so that I don't make it "Reading Review...someday". We have to get back into some habits. I have to continue to use these times as teaching moments so Thursday it is! Now let's hope I can stick to it!

Diabetes Burnout

2012-01-04T13:20:00.000-03:30

This morning I read a post about an adult who was suffering with depression and struggling to keep his diabetes in check. He knew what to do but just could not always bring himself to do it. The post really struck a chord with me.

As a parent of a teen with diabetes, I don't have to remember to test before and after every meal or intensive activity. I don't have to remember to bolus for every meal. I don't have to watch my pump for reminders of site changes, low cartridges and low insulin. I do not have to carry around constant reminders of my diabetes.

My son leaves the house and takes diabetes with him. When he sleeps elsewhere, he is in charge of his own care. I technically get a break. I still think about it. I still count the carbs in a meal out of habit. I will still keep an eye on dates and ask about site changes. I will look at trends and deal with adjustments. I get tired and yet I am not the one living with diabetes 24/7. This scares me.

My son came home a few days ago after spending time with his father and other family members. He didn't change his site. I avoided looking at his meter until later that evening. He had come home alive. I did not want to ruin our reunion if things were not as they should be...and they weren't. When I finally scrolled through the meter that he used, I found times that he went over 12 hours without testing! The readings that were all "in range for the most part", included a 28 (504).

I was too tired to scream despite having just had five days away from diabetes. I was too tired to fight about it. I read through the readings aloud. I asked him if he had used another meter because there were a LOT of missing readings. He gave me his usual look of "of course I must have used another meter because I would never do something like totally neglect myself just because you were not there to remind me." I knew otherwise. He knew I knew. I walked out of his room.

If I can get this tired, this frustrated, this worn out after 11+ years and its not my disease, how do those living with it handle it? How can we not expect depression? How can we not expect burnout? We can't.

We can only offer help and be there to lean on. My son has been able to bolus on his own for many years but there are still times when he hands me his pump after a meal. He has been doing his own site changes since he was at least 11 or 12 but he still calls me in now and then to do them. I am okay with those breaks. He knows what to do but some days its just nice to let someone else deal with it. I hope I can continue to do this for him...not forever but whenever we are together. Hopefully it will help when he has to battle his own diabetes demons.

Another Reason to Test at Night

2012-01-03T10:11:00.000-03:30

We all know the many reasons that people like myself test their children's blood glucose levels at night. There is the fear of dead in bed, the desire to "know" what is going on in their bodies, checking basal rates, making sure an infusion site is working, checking on the result of so much activity during the day and many, many more.

This Christmas I discovered yet another reason to test at night...the turkey!

Yes, the turkey. In this part of the country, a large holiday meal is usually served at noon rather than in the evening. This means that if you are having a turkey of any size, it needs to be put into the oven long before normal people get out of bed for the day.

We were having all of our children over to eat. This bird was going to have to see the oven long before daylight would be arriving. As I thought about having to crawl out of bed during the wee hours I was less than thrilled but then I remembered that it was okay. I had to be up anyway! I would kill two birds with one stone, in more ways than one!

With both of my boys home, I knew that they would have been up late so I did not have to be up too early to test. Four in the morning would be fine...and it was! I got up, tested my son and he was perfect. You know that perfect that makes you wonder if he will drop or be okay? Lucky for me, I had a bird to stuff and get in the oven. I did just that and then went back to retest him. He was fine. I could sleep for a few more hours before the Christmas mayhem began.

You have to take the benefits of diabetes where you can. This holiday season that one worked for me!

But my readings were still okay

2012-01-02T14:01:00.000-03:30

Our Christmas break is over. I enjoyed a wonderful holiday with family but all good things must come to an end. Today I picked up my son from the airport. He had spent the New Year with his father.

As with every trip, I packed extra insulin, test strips, and infusion sets. I added alcohol swabs and extra insulin cartridges. He had his cell phone and as was our routine, he would be able to check in with me by text or a phone call. He was set for his time away.

Once again, his cell phone quit working within a day of his arrival. I really need to get him a new, more reliable phone. I asked his brother to make sure that he called me after a few days. He did. He swore his readings were all pretty good. He had handled a low but all was fine. I reminded him that he was due for a site change. He was going to do it right away....or so he said.

This morning, as he sat at the table, I noticed his site was still in his arm. I looked a little closer. There was tubing attached. It was red. He had not changed his site! This was the same site that we had put in before he went away! I could not believe it.

My son swore that the site had been working fine. He was running high today but it was the first time. I did not even want to look at his meter. If he managed to forget his diabetes enough to ignore site changes, how often did he forget to test? I have to remember that he is still young. He still has a few years left before he has to do this without his mother looking over his shoulder. Thank heavens for small favors!

Are you alive?

2011-12-22T11:47:00.000-03:30

I woke up at 1:30am in a panic. I had had one of those dreams that you are being chased and was still a little freaked as I tried to get my bearings. One of my rules is that if I wake up for no reason I need to test my son. He had probably only gone to bed just before I woke. Did I really need to test him? Well, a rule is a rule and it has served me well all of these years....

Off to his room I went. As I fumbled around with the meter he woke and stared at me. "What are you doing?"

"Testing you."

"I just did that."

"How long ago?"

"Around 12:30 or so"

"Well I am doing it again. Its your fault for waking me up. I had a nightmare. We were being chased so now I am awake to test you."

I could see him silently thinking that I was nuts but whatever worked for me. He rolled over and the meter said that he was fine.

Two hours later I woke again. I got up and headed to his room. He had been in that absolutely perfect range that makes me nervous so I wanted to see where he was then.

I fumbled with meters and made a mess of things. My son again woke up.

"What are you doing? You just tested me five minutes ago!"

"Actually it was two hours ago and I was just checking to make sure that you were alive."

"Oh. Was I low?"

After the words left my mouth and I heard his response, I wanted to cry. It was an innocent phrase that I would say to anyone. I simply meant that I wanted to check to see that he was okay. In his reality, the statement was to be taken literally. He was matter of fact in asking about his readings. I was so sad to think that this is our lives...fear of lows and the reality of death every time his eyes are closed.

Once again wishing for a cure to take away fears that should not be.

My Christmas Wishes

2011-12-21T09:49:00.000-03:30

My son was charged with the daunting task of purchasing gifts for me from him and his older brother. He hates to shop. He thinks life would be much simpler if he could just buy me tools. He thinks that I am the hardest person in the world to buy for...he might be right! He asked for my list and I found it really difficult to come up with things. My mother asked me the same question and the list was shorter. When Larry asked, I drew a blank.

Yes, jewelry is always the right size and the iPhone would be nice but I will get that later. The Kindle? One day. The new printer since mine died this week? Yeah, but it can wait...Larry's printer works and lately I only print Little Einstein coloring pictures. The candles, clothes, and books are all lovely. That special gift of a picture or something that says I was thought of is wonderful but the more I truly thought of what I really and truly want, the farther I moved from the material world. You see all of those material things are nice but I don't need them.
Larry had it right when he said to the same question, that he only wanted his family to be happy. He wanted his children and his grandchildren to be at peace with themselves and enjoying a worry-free life. I agreed completely. His answer did not help me to come up with a great Christmas gift for him, but it did keep me thinking. What were my Christmas wishes?

My answers were actually quite simple. I wanted my grandmother back for one. She has Alzheimer's and lives far away. My only contact with her for the most part is via the telephone. A recent conversation had left me heartbroke when I was sure that she didn't know who I was and most likely didn't even know who she was. I wanted her back in all her quirkiness. She loved us all unconditionally and I missed her terribly.

My next wish was to know that my uncle was safe. He has been missing since September. His children don't know where he is and no one else does either. We don't know if he is healthy or sick. We just don't know what has happened to him or where he could be. He has missed his birthday and that of his oldest child. I keep praying that we will find him for Christmas.
Diabetes also falls on my wish list. Yes, a cure would be ideal. Its something I will focus on more and more but until then, I wish that my child and everyone else's child had the access to the pumps, CGMs, insulin and test strips that they need to keep themselves alive regardless of income, insurance or location. I hate to hear of people struggling just to keep themselves healthy. I hate worrying about the future health and safety of my son.

So what do I wish for Christmas? Peace. Happiness. Lots of love...but then again I have been blessed with that. Love of family. Love of friends. Love of friends who have become family throughout the years. My grandmother had a good day when I spoke to her yesterday, so I have received one truly touching gift already in her parting words of "I love you". My uncle, I will continue to pray for. Funding for diabetes supplies? I will continue to lobby for.

I am truly blessed in so many ways and I thank you for being a part of that blessing. To all of you-- Happy Hanukkah, Merry Christmas from my family to yours!

Life before diabetes?

2011-12-20T14:50:00.000-03:30

I recently read posts from people who wanted their lives back. The ones that they had before diabetes entered the picture. They wanted to go back to their old "normal". These comments gave me pause because I can no longer remember much of that life or imagine how it would be now.

Diabetes has lived in our house since March of 2000. The number of times my son's blood has been tested and his fingers lanced is far too many to try to figure out. The number of times he has had needles stuck in his body to receive insulin, have blood work done or insert infusion sets again is beyond me. I just know its a lot but I just don't have the energy anymore to calculate the number.

When we began this journey, my son was just a toddler. He played, laughed and did his best to keep up with his big brother. Today my son is a teenage boy. He laughs. He does his best not to run unless he is involved in a serious game of hockey with friends. He goes to movies and looks forward to the times that he gets to spend with his big brother.

Because I have two boys, both of whom are now teenagers, I know that diabetes has created some very real differences in their lives. I worry about drugs, alcohol, driving and girls. I worry about their education and what they will do with their lives. Before diabetes...well I still worried and wondered what sort of young men they would become.
Diabetes has added another level of worry when thinking about my youngest son of course. I worry about his level of care--will he ever learn? Will he ever wake from a low? Will he remember to test? Will he change an infusion set on time? Will he be able to afford his supplies? How will he handle girls and diabetes? Will he be careful if he decides to drink? Will he test before he drives?

Before diabetes, I never truly realized what our health care system did and did not cover. I did not understand the cost of staying alive and healthy when living with a chronic disease. I don't think I that I would want to go back to that level of ignorance. It has given me a new respect for many people--not just those living with diabetes.

Life before diabetes was different but it was a very long time ago. It remains a distant memory. Since diabetes, we have changed and grown. We have seen our character become ever stronger. I have a few more wrinkles than I might otherwise have had. I live off of a lot less sleep than I imagined possible but I have read more books...waiting for a 3 am low to come up gives you time for things like reading.
Our lives are different now than they might have been but its not all bad. I have made amazing friends. I have met incredible people. We have experienced things that we might not otherwise have done.

I would still give anything to see a cure. I would still do anything to take this disease away from my son. I still wish that there was a magic wand I could wave to make this disappear for everyone's children--young and old. Its not a life I would wish on anyone, but its the life we were handed and we do our very best to live it to the fullest.

Our Review of the Contour USB

2011-12-19T12:15:00.000-03:30

At the pharmacy a few weeks ago, the woman behind the counter asked me if I had tried the Bayer Contour USB meter? We hadn't. I wanted to ages ago but they were never free so we didn't bother with it. She suggested that my son might be interested and to talk to him about it before we ordered our next stock of strips.

I took some information home for him to look at. It seemed strange to think of him as making the decision regarding his diabetes tools but he is growing up and has to like the tools he uses. Not surprisingly, when I asked if he wanted to try a new "toy" he jumped at the idea. We have been meter collectors for a number of years and are always searching for just the right one. His meter of choice has been the One Touch mini and he is eager to try out the new Verio but for the moment he was set to try the Contour USB.

Eventually I remembered to ask for the free meter when ordering our strips. I brought the Contour USB home to him. I never opened the box. I didn't read the instructions. I just passed in onto him. He took the box to his room and emerged hours later.

"Well?"

"It looks pretty cool!"

A few days later, I took the meter to review the data. He was still using his One Touch at school but was playing with the Contour when he was home. I could not figure out how to turn the thing on let alone find the auto log. My son, on the other hand, could easily get it to work and find whatever data he wanted. I decided that I would try to see what was happening on the computer instead.

This weekend, I finally took the opportunity to try to use the meter myself. It turns out that it is a lot easier to put in a strip and get it to work than it was for me to search its history! This meter was easy, light weight and had great back lighting. I was pretty impressed. As it was calculating, it asked me if I wanted it to note that is was "before a meal", "after a meal" or "just a random test". It did not leave the screen until I made a choice but as I was deciding, it had already figured out his reading! It so neat! The reading was large and bright--perfect for a woman who rarely wears her glasses at 3am when testing. The best part was that once I had seen the reading, I pulled out the test strip and it shut down!! No buttons to hold. Nothing! Just power down.

I asked my son what he thought of the meter? He again said that he really likes it. I still find the strip container a little bulky and the strips are large despite the small amount of blood you use. Despite that fact, so far it seems to be a pretty neat device! We will be downloading later today to see about getting the "full effect".

Its scary how little diabetes gadgets can add so much to our days!

Recipe for Humalog...not the insulin

2011-12-17T13:12:00.000-03:30

After posting about the "Humalog" that I had hidden away from my son in the deep freeze, I was asked to post the recipe and carb count. Upon further investigation...well I have no clue as to how he counts the carbs in this! I believe we used to use a fudge carb factor. In any case, I have figured out the carb count for the entire recipe. Sorry, you will have to weigh the logs yourself to get a carb factor or divide by general piece size for a general carb value per piece because as yesterday's post indicated, the logs in our house are disappearing very quickly and can no longer be accurately weighed.

So from our house to yours, Happy Holidays! and enjoy some "Humalog" with your Christmas dinner!

Chocolate Yule Log...AKA Humalog

1c icing sugar
8 oz colored miniature marshmallows
1/2c coconut
5 squares of semi sweet chocolate
1 egg
5 tbsp margarine.

Mix icing sugar, marshmallows and coconut in a large bowl. Set aside.
In a double boiler, melt chocolate and margarine.
Add egg to chocolate mixture and stir until thick.
Pour chocolate mixture over the marshmallow mixture. Mix well.
Cut two long pieces of aluminum foil and sprinkle foil with extra coconut.
Divide chocolate mixture in two.
Form two logs--one on each piece of foil. Roll in the coconut or sprinkle on top after the logs are formed.
Roll up in the aluminum foil to hold the log shape and chill in refrigerator or freezer. Slice to serve.

498g of carbohydrates for recipe. 249g per log.

*walnuts can also be added to the marshmallow mixture

Humalog...a Christmas Treat?

2011-12-16T09:05:00.000-03:30

"Mom, why do you keep the Humalog in the freezer?"

What? Humalog? We haven't used Humalog in years. "I keep your insulin in the fridge so that it lasts longer."

"No! Not the insulin. The Humalog"

"Do you mean the Yule log that I keep in the freezer so you won't eat it all before Christmas?"

"Yeah! The Humalog! Its a real pain trying to cut it when its frozen."

Oh my!

Nova Scotia Government is Scrooge for those with Diabetes

2011-12-15T12:56:00.000-03:30

After the announcement earlier this month by the Saskatchewan government that they would be expanding their coverage of diabetes devices and supplies, Nova Scotia has sadly announced this week that they will not cover insulin pumps for residents of any age. I have to admit that I remain very shocked and disappointed by this announcement.

I have met a number of people who have worked hard in Nova Scotia for a lot of years to see improved access to devices and supplies in that province. I am surprised that their efforts continue to go for not.

When Nova Scotia elected an NDP government, I thought that a pump program would be guaranteed. My knowledge of politics is minimal. I have no political affiliation or loyalty. I vote for you if I like you and think that you are actually doing your job. Its that simple for me. I also have a very limited idea of the basic principals behind of most political parties. In Grade 10 social studies I was taught that the Liberals are "liberal" and believe in social programming. The Conservatives are not as interested in social spending and believe you should make it on your own merit. The NDP are far right and thus believe even more in social responsibility that the liberals. That was how I saw it.

It was because of this view that I felt that an NDP government in Nova Scotia would ensure improved health care. They were about social responsibility right? They believed in helping those less fortunate or those who cannot afford the best medical treatment, weren't they? I guess not.

This scare me. I am not concerned with the fact that my general view of political parties is obviously off but I am concerned with a government that has just said NO. If our socialized health care is not a priority for a social party what hope do we have? If they will not help out those who cannot afford to avail of the latest technological advances and best medicines, then what will happen when devices like the Artificial Pancreas are developed? We will be living in a very two tiered system. Perhaps we already are. Those who can afford to quality care for themselves or their loves ones will get it. Those who can't don't and won't. That is disturbing.

What happens in those families with more than one person with diabetes? How do they cope without government help? How do they keep themselves healthy? I have already seen families where Mom does not test as often so that her son can have more test strips. I have seen families where a parent has to decide which child will get an insulin pump and which child will have to stay on shots because she/he cannot afford to pay for it for both.

During the holiday season, we think of spending money on gifts. Can we afford to buy our child the latest xBox game? Have we bought them a new laptop or tablet to put under the tree? Should we buy our loved one a new iPhone? The list goes on but for many living with diabetes, one xBox game is equal to a box of 100 test strips. A tablet would cover a month's worth of pump supplies. An iPhone may be the same price as a CGM.

This is not the way our country is supposed to be. This is not how Canadians should live. This needs to be fixed. We need governments that care. No to medical devices and supplies is just not acceptable. We must say yes to compassion, yes to improved health, and yes to looking after those who cannot look after themselves. Access to medical devises and supplies should be a given not a budgetary issue. Things must change.

One out of two is a start!

2011-12-13T08:47:00.001-03:30

Saturday night I woke up to test my son. He was a little high so I made a correction and went back to bed. A few hours later I woke up and he was still high. Again, he wasn't "really" high but his bg levels had not dropped as I would have expected after the correction. I made another correction and waited for my son to get up.

When he woke, I told him that I thought he should change his site. He had been high despite a correction. He said that he disagreed. "I am high because there was a blockage and I fixed it."

"What do you mean there was a blockage? When? You fixed it how?"

"Last night, at four in the morning. There was a blockage in the tubing but I fixed it."

"Last night, at FOUR in the morning YOU woke up and fixed a problem with your pump?"

"Yeah, I heard the alarm and woke up and fixed it."

"YOU heard the alarm? YOU woke up??"

"Yeah, I woke up. I got it fixed. No problem."

Yes, as you can tell I was completely stunned. He would sleep through a nuclear holocust! He woke up to an alarm on his pump without it electrocuting him? Was my son growing up? Was he becoming responsible? Could he really wake up from an alarm all on his own?

Short answer? No. The next night, we seemed to have had the same problem. He was high. I corrected. Later that morning I corrected again. This time the blockage alarm happened while I was there. I woke him up and made him change his site. He was happily sleeping through the alarms.

Oh well, baby steps. He has at least woke up once for an alarm. That in itself borders on a Christmas miracle!

No this is not my son but he was just too cute not to add!

He isn't turning off the alarm clock!?!

2011-12-09T15:01:00.000-03:30

The other morning I got up like every other morning. I turned off my alarm before it rang. I stumbled to the bathroom in an attempt to wake myself up. I waited to hear my son's alarm go off before I had to go in and kick him out of bed.
While I was washing my face, I heard the telltale "Beep, Beep, Beep!" of an alarm clock. I waited to hear my son turn it off.
And I waited.
And I waited.
What was going on? Why didn't he turn it off? Some mornings it will take a bit before he will bother to reach up and shut it off but as it gets more insistent, he always turns it off. Why hasn't he turned it off?
The beeping continued.
Panic began to creep in. He was high last night. I know he was. I tested and retested before I corrected. He was low on insulin. There is no way he could have gone that low...could he? He was fine. Why wasn't he turning the alarm off?
I rushed to dry my face and put in my contacts. Of course because I was beginning to panic, my contacts jumped everywhere but into my eyes. I finally got everything together. I had to see what was wrong.

As I stepped out of the washroom I realized that the beeping was coming from my own room! While I thought I had turned off my alarm, I hadn't and since Larry was already up and in the kitchen, there was no one in the room to turn it off!
With a huge sigh of relief, I went to check on my son. As expected he was just waking up and looking at me wondering what my problem was. Oh my! What I do to myself!

Pancreatic Dynamic Duo

2011-12-08T08:28:00.000-03:30

What was your reading?

8.1 (145ish).

Two hours after you ate...I did a great job as a pancreas this morning!

What? Who?? You? Excuse me, but I did a great job!

How do you figure that one? I calculate the bolus. I figure the carb to insulin ratio. I establish the basals and this morning I got it right.

But I push the buttons! If I didn't bolus I wouldn't be in range would I? That means that I am the good pancreas.

He had me there! You've got to love the logic and the validity of the argument!! "Okay WE make an awesome pancreas."

He was okay with that but still felt that he deserved the bulk of the credit. I pray that one day he will take all of the credit and still will be doing a great job. At that point I will know that he paid attention and learned well.

For now? Well together we can be a pretty good pancreatic team! Despite the complaints, the grumbles and the missed tests, working together for the past three months we have again managed to keep his A1c under 7% and brought it down three points from the summer when he does the bulk of his own diabetes care. Very proud momma...aka the other half of my son's external pancreas :)

A Grumbly Teen Day

2011-12-07T14:17:00.000-03:30

I think I have seen the first signs of "I hate diabetes" from my son in a very long time. When he was first diagnosed, the new life of testing, injecting and specific eating was foreign to him and he rebelled by throwing up and refusing to eat. It was his way of gaining control at two years old.
My son is much older now. He has lived with this disease for most of his life. He has been great all things considered. He has done what he must for the most part. He has tried to ignore it as often as possible but he knows that he has his mother to rely on for help. He tries to be just a normal kid who does not like to draw attention to himself or diabetes.
Recently his report card came home with less than stellar remarks. The marks were varied but most were not up to his standard. The comments were not at all what I expected of my son. I was terribly disappointed. He knew he had to do better. He had messed up. The discussion was very emotional for both of us.
I reminded him that a full-time career in a dead-end job was not just beneath his potential but harmful to his health. He needed to focus on getting a good job that will allow him look after his health care needs. Diabetes would partially dictate his career choices. For the first time, I think that sadly hit home. He was not happy.

Teen attitude...this picture really captures it!

Our latest diabetes clinic appointment occurred the day after the report card mayhem. At the clinic he was very surly and not at all like himself. We hate the long wait times and he was miserable. While he was polite when they asked him questions, when we were alone he was seething. Any class in school was better than sitting and waiting. Going back to injections was preferable to seeing his team every quarter. How long did he have to do this for? A lifetime? That was insane. He was having no part of this.
My heart broke. How do I help? How do I fix the attitude? Will it pass? Is this just a phase? What will happen later in life when he is fed up like this? Will he quit and negate his health? I have to believe not. I have to believe that he will fuss and complain but the results of non-compliance on his body will put him back on the straight and narrow.

I never liked adolescence when I went through it. I dreaded it when my oldest son began his journey and it has not improved for my youngest son. I know we will survive, but oh the bumps and bruises we may have along the way!

Adolescence and change

2011-12-06T18:44:00.000-03:30

It is that time of year again, a time when I seriously start to think about a CGM for my son. I have been researching them for years. Cost has always been a huge deterrent but I have said that when he became more independent and before university it would be a must.

Today I spoke a bit with his diabetes team about the various systems. We were in agreement as to which system would work best...the one that I can't get right now of course.

As adamant as I am about getting a system, my son is equally as adamant about not having one. He detests the idea of another site. He cannot stand the idea of carrying around the receiver. He would prefer to carry his meter and test when he feels he needs it.

I tried to tell him that he could safely miss more tests with a sensor. I would still have data and trends that could be used. I would be able to rest at nights with the knowledge that he is stable or his readings are headed up from a lower range. He would not necessarily have to test in front of his friends. He still wants no part of it.

I have been racking my brain trying to figure out how to convince him that it can work. Using it may be the best solution but it is not something that anyone has laying around for me to try him with. He is of an age when he can have a say and it kills me. I appreciate the independence but the stubborn "I will not try anything new. I am still alive with the old way." attitude kills me.

What hurts me even more is when I read stories like I saw today. The tale of young Matthew Calderon. He was diagnosed at age 2 just like my son. He played basketball and after a night of play, had a seizure and died. In other words, he went low and never recovered.

I try not to read these stories. I cannot think that this could be my child but I also know that technology can help to save lives. It is not perfect. It can fail but it can also help. It can only help if it is used. It can only be used if you can afford it. If you can afford it, it can still only be effective if you wear it.

I desperately want my son to wear it. I want him to appreciate the benefit. I want to change his stubborn attitude. It scares me for the future. I pray that this is disgruntled adolescence after a week that did not go his way. I pray that he will be open to keeping himself as healthy as he possibly can.

Growing up, independence and Mother's fears.

2011-12-05T11:36:00.001-03:30

Time moves so quickly. It can feel so slow when you ask your son for the twentieth time if he has changed his site and he hasn't. You wonder if it will ever change. Will he ever get it? Will he remember to test? He will not live with me forever no matter what. How will he continue? Will any of it sink in? How will he handle things? What will he do when he needs a break?

I am a worrier and the thoughts going through my head lately will soon drive me over the edge if I am not careful. Preparing for my oldest son's graduation from high school and realizing that he is on the verge of manhood, is sending my mind reeling. My children are growing up! Have I prepared them well enough? What else can I do for my youngest? How will I handle their independence? It will not be easy but I suppose I will adjust.

When I look at my son's log book I wonder. When I see how well he pays attention to site change reminders...five days later, fear takes over. How will he handle this for the rest of his life?

I then listen to him react as I ask "Where are the tests? Why did you not test for this food? Why did you not check after that low?". My questions are no longer asked in panic mode. I no longer ask in that hysterical, meltdown voice. I simply ask the questions and wait.

His answers are now more interesting. "Mom, my new year's resolution is to test more. I can't believe that I am missing these tests. I can't do that. I have to do better. I will definitely be working on this."

I know, you are thinking, yes he is saying everything he feels that I want to hear. You may be right but I have also watched the actions. I no longer "freak out" as often over his care mistakes. I think a lot. I wonder what else I can do but I give him facts. We look at trends together and decide what needs to be done.

"Why where you high? Oh you made a bolus mistake. No problem. Now you know for next time."
"Where did that low come from? Right! Exercise, okay we will work on that one but where is the retest? Oh there it is."

He is learning. The process is so painfully slow that I still fear him leaving my house. The rational part of me says that I allow him to do a lot of his care without my hovering now. He is left to go places and must face the world on his own. He comes back alive and well. We still have another three plus years at least to learn, stumble, fall and brush off his knees. He has learned a lot in the past few years, he will continue to learn. We will be okay...I pray!

Muscle Mayhem

2011-12-01T09:26:00.000-03:30

After 24 hours of nagging and the threat of using a butt site for the first time in his life, my son finally did a site change. I was lining up the top of his little toosh but he was not having any of that! The arm that he couldn't reach was to be the site of the day.

His reading a few hours later was a little higher than I would have liked but I attributed it a carb counting error. I went to bed and around midnight I heard him get up to use the washroom. Much to Larry's amazement, my son never needs to get up during the night...unless he is high. Alarm bells screamed in my head while my body craved the warmth of the of my blankets. I forced myself to get up and waited for him in his room.

I asked him to test. I heard him say that he was 13 (235). Oh well, false alarm. As I headed out his bedroom door but paused and I said again, "13.1 right?"

"No 30.4(547)"

WHAT THE #!@^??????

Suddenly I was awake. Its time to put in a new site NOW.

I stumbled around and found a site. As I opened it up, we realized that the tubing was way too short for his other arm. Crap. I grabbed another site. I prepared the new site and had another revelation...I should be using 30 degree sites on his arms.

As I mentioned before, my son enjoys lifting weights in his spare time. He is not into body building but his sweet little arms are slowly developing into the muscled limbs of a healthy young man. Baby fat is giving way to muscle and that muscle is creating havoc with infusion sets! He hates the 30 degree sets. The insertion needle gives him the willies. He has to use them on his stomach because there is too much muscle there but he still hates them. Sadly it seems that that's the price you pay for being fit. I am sure he will think its worth it in the long run.

It doesn't end with November

2011-11-30T11:49:00.000-03:30

November is drawing to a close and so is Diabetes Awareness Month. I have seen a lot of awareness activity over the month on Facebook and Twitter. People have been stating their wishes. They have given daily facts. It has been amazing. As the month ends though, the best post I have seen came from a friend who noted that while Diabetes Awareness month is almost over, her son continues to have diabetes 24/7/365.

In December we will still be fighting for better coverage of diabetes devices and supplies. In January we will still be fighting to improve education, awareness and assistance in schools for our children with diabetes. In February we will still be working to get our teens to remember that they have diabetes and must attend to their care.

That last statement is the most depressing to me. I keep wondering, when will he ever learn??? Today I realized however that it had much more to do with him living with "teen brain" than it has to do with him having diabetes.

Last night, while logging his information off of the pump, I noticed that he needed a site change. When he headed off to shower, I reminded him that that would be a great time to do the site change he was supposed to do a few hours before. He didn't do it. As I headed to my room to read and fall asleep, I again reminded him to do his site change. He mumbled something back. At four this morning he was high despite a change in basal rates. I knew that the site was not changed. This morning I got him up early with the words "Change your site before you do anything else."

As he was leaving for the bus, I asked "Did you change your site?"

"I will when I get home."

AAAAHHHHHHHHHH!!!!! UUUURRRRGGGGHHHH!!! THUMP!

I was not pleased. I then looked into the garage where the box that I had asked him to take out to the garbage still sat. He did not bother to remember the site change but he hadn't remembered to do other chores either so what can you do? Scream. Bang your head against a wall. Make him do it when he gets home and threaten to do it for him in a site that he HATES...or eat your young before you ever reach this stage. The last idea is not longer an option because he is bigger than me.

No diabetes and teen brain do not end with November.

Forgot a diabetes supply? Never a problem in a house where D lives

2011-11-29T19:23:00.000-03:30

This evening we have a guest who has Type 2 diabetes. He is very conscious of his diet and testing his blood but because of uncontrollable circumstances, his meter did not arrive at our house with the rest of his things.

I heard Larry tell him that he was sure my son could help him out. He knows that we have a number of spare diabetes supplies so finding an extra meter or lancet would most likely not prove difficult.

After overhearing the conversation going on the living room about supplies, I turned to my son and asked if he could help the gentleman out. He didn't think that would be a problem. What type of meter did he want? I suggested he grab one of the meters that we rarely use so we didn't mess up logging the wrong person's readings.

My son then asked "What type of lancing device?"

I was sure it really didn't matter.

"Well, there is one for the hand or the finger?"

The finger would be preferable.

"Hmm, well there is a bigger one or a smaller one?"

Oh my! I never knew there was such a variety! He calmly told me that there was. I told him that I would leave it in his capable hands. I just wanted a lancing device with new lancet, a meter, and some strips please.

This is just the first few meters and lancets I found in his drawer!

Get a letter from Santa AND help Diabetes Research!

2011-11-28T15:37:00.000-03:30

I love Christmas. It is my favorite time of the year. My mom was and is huge about Christmas. She passed this love affair onto me.

Its not about the shopping or the gifts. Its the lights, the decorations, the tree. Its time with family and friends. Its little faces lighting up. Its tasty treats and delicious egg nog. Its Christmas songs and a light dusting of snow. I have been wrapping presents and playing Christmas music for a week now. So imagine how excited I was when I saw the latest fundraising idea from the DRI?

Its letters from Santa! For a small donation, you can have Santa send your little elf a personalized Christmas letter and help fund diabetes cure research. It sounds like a win win event to me! We would all love for Santa to deliver us a cure for diabetes, this is one of the best ways to help make that wish come true!

Go to Santa Claus' donation page now.

Baking with Barb

2011-11-25T08:56:00.000-03:30

I love to cook. I enjoy baking and creating new meals for my family. I love to follow food blogs and to scan through recipes.

Since diabetes moved into our house and I have gotten a bit older, I find myself altering recipes on a regular basis. It is now important that foods be lower in carbohydrates if possible. With a history of heart disease in my family and my own heart issues, it is also important for foods to contain more fiber and less fat. This has meant that many family favorite recipes have been changed over the years. I am certain that my grandmother would roll over in her grave if she knew what I had done to some of her amazing recipes but we are able to enjoy the wonderful tastes while being a bit more healthy.

I have found that some recipes allow me to completely substitute Splenda for sugar while others require the "real thing" but in a lower amount. I have recently tried the Splenda brown sugar blend which seemed to work well in some cookies. I have added flax and whole wheat flour to pizza dough. I have learned to substitute some or all of the margarine or oil in a recipe with apple sauce. Sometimes the recipes work and sometimes...well Grandma did know what she was talking about.
The other day, I took my creativity to a new level and came up with a new cookie that will be a Christmas staple. We were eating chocolate chip cookies with colored chips and I had a stroke of genius...Candy Cane cookies! If you have done this already or have a similar recipe, please don't tell me. Allow me the illusion of thinking that I came up with this first...again, at least in my mind.

I took out a cookie recipe that my boys and their friends have loved for years and began my tweaking. I put the creation in the oven and loved the taste that came out. The resulting cookies were approximately 10g of carbohydrates per cookie and really yummy if you like a peppermint holiday treat. (Sorry I haven't figured out the carb factor yet because I ate too many of the cookies before I remembered to weigh them). If you are interested, here is what happens when you go "baking with Barb"!

Barb's Candy Cane Christmas Cookies

Cream together 3/4c margarine, 1/2c Spenda blended brown sugar, and 1/2c Splenda
Beat in 1 egg and 1 egg white/egg beater, and 2 tsp of vanilla
Combine 2 cups of flour, 1 tsp of baking soda, and 1 tsp of salt
Gradually blend.
Mix in 1/2c of crushed candy canes (approximately 20 miniature candy canes)
Drop by a teaspoon onto lightly greased cookie sheet.
Bake in oven preheated to 350F for 15-17 minutes.

Yield approximately 28 cookies
Recipe is approximately 284.75 g of carbohydrates.

Two or Three?

2011-11-24T10:00:00.000-03:30

Last night was one of those nights...you know the ones that you wake up but debate if it really is time to test or not? I have written about the debate many times. Last night was not a lot different.

I woke up at two. Should I test? My bed was really warm. Maybe I could wait until three. My son had gone to bed a bit early and had tested earlier than normal. He was perfectly in range which could spell disaster later. I decided that I had to get up.

Instincts were sadly right. He was low--not a lot low but low enough to need some glucose. I dug through his drawers looking for some tablets. I know I have said how much he hates waking up to a glucose tablet hangover but tablets it was going to be. After grabbing three or four empty tubes of tablets, I finally scrounged up enough glucose to treat the low. I fed him as he slept and then stumbled to find my book and a place on the couch.

This process continued until 3am. Despite the low being caught at 3.7(around 65), it took a lot of glucose to bring it over 4.1 (75ish). As I sat on the couch reading, I looked outside and noticed the snow that had fallen. The weather people had forecast a storm of snow, after an hour to treat my son's low, a snow day would be a welcomed treat. I headed back to bed hoping that the weather would worsen and realizing that while I wondered if I should test at two or at three, Diabetes had decided that I would test from two UNTIL three. UGH!

Teen Diabetes Logic

2011-11-21T15:58:00.000-03:30

"Before you go upstairs bring me in your meter."
"Well you see Mom, I've got some good news and some bad news for you."
"What do you mean?"
"Well you see there is good news and bad news. The good news is that I have to do all my tests for the rest of the week! See, isn't that great news?"
"Huh? What is the bad news?"
"Well you see I am going to have to do all of my tests for the rest of the week because I missed a few tests today at school."

Back up the banana boat here! We have negotiated testing down to basically three tests per school day. This is nowhere near my ideal but it works for him and is more than a reasonable request from me. He must test as soon as he gets to school or at their first break. This is about two hours or a little less after he eats his breakfast. He is then to test before he eats his lunch--he is always to test before food hits his lips so how is this test ever missed? I don't know. The final test is two hours after lunch or just before he gets on the bus. Because of scheduling the two final time slots are basically the same. We have a three strikes rule--miss three tests and you lose a privilege. If he has already missed two tests and he only had to test three times during the day....

"Did you test at all today???? Let me see that meter. What the heck is going on?" My mind was still reeling from trying to unravel his logic and what I was coming up with did not look good.

"I told you Mom, I have to test for the rest of the week but see I tested at 3 and I did test at 1. I was pretty high then but we really don't know why because I kinda missed the morning test and the before lunch test but you see I do have to do all of my tests for the rest of the week. That's a good thing."

THUD! Yes, that was the sound of my head hitting my desk in frustration. If only he could check his blood sugar levels as well as he rattled on with excuses and teen logic.

Sleepless with Diabetes

2011-11-18T09:06:00.000-03:30

Diabetes has lived in my house for more than 11 years and 8 months. During that time (and for a number of years before), I have never slept through the night. I wake up at least once but more often multiple times through the night each and everyone of those nights. whether my son is at home or not.
Each time that I wake up I run through a gamut of emotions... Holy crap! What's wrong? Do I need to test? Is there something going on that I am missing? Should I get up? What time is it? I must need to test!
As well as... do you have any idea what time it is? You went to sleep less than an hour ago! Are you insane? Get some sleep! He just tested before he went to bed and that was only 20 minutes ago. Roll over. Sleep for another hour or two maximum and then test him. At that point it will be okay. He is alright. Close your eyes and shut down your mind. Enjoy the break!
Are you serious? What if he is low and I missed it? What if????
Go to sleep.
At that point, I will usually sleep for another hour or so and then am woke up by much of the same dialogue and mounting anxiety. This time it is more of a "get your butt out of bed. You wanted to be woken up, you were, now deal with it!".
I crawl out of my warm bed because I know that I will stress myself if I stay there any longer. I stumble into my son's room, wonder where the light is and then pause as I watch his bed. Just as I did when my boys were sleeping in their cribs, I watch. I hold my breath until I see his chest rise or hear him snore. If he rolls over as I walk in the door, my heart is set at ease...until I test him.
No matter what the result is though, I do have some peace. My son is alive. He is okay. Diabetes did not win. I am doing my job. We will make it through another night...I think.

For some reason, the past few nights when I have woke for the fifth time in four hours, I have ached for the too many other parents who were doing the same thing. I have been grateful for the parents who do not have this experience. I have longed for the day when I don't have to wake and worry...whether my son is with me or not. I longed for the day when it is safe for him to sleep...as well as me.

More noises from Charlie Brown's Teacher

2011-11-17T14:10:00.000-03:30

When my son came home from school, I reminded him that I wanted to look at his pump and meter later that evening. I asked him if he knew of any trouble spots that I should be concerned with. He said that he had been high after breakfast but felt that that was probably because of a bolus error. Everything sounded good...until I checked the meter and the pump.

I looked at the meter first. There was a 5pm test and a 1pm test. Okay, what happened to the 2:30-3pm test? There was the high from breakfast, and the tests from the previous day but wait, we were missing a few more tests. There were almost as many missing readings as there were readings. This was not good.

As I thought about the after breakfast high, I began to wonder..."Let me see your pump."

"Are you going to make some changes?"

"Just let me see your pump. Yeah, I thought so."

"What?"

"Well, you came home after school went straight to the fridge. I asked you if you had tested and you said that of course you had but your meter says that you didn't. I see that you didn't bolus your lunch until 1:30pm. Since you are in class at that point and a missed meal bolus alarm went off, I am guessing that you forgot to bolus your lunch. When I checked for a breakfast bolus, which I remember asking you not once but twice this morning if you had done it, guess what I saw? No bolus again!!! You seem to be forgetting an awful lot lately. Are we going to have to go back to you testing and bolusing in front of me as well as texting me all of your readings from school? Will I have to demand your meter the second you walk in the door from school?"

"I can't believe this. I must have remembered to bolus. I can't believe I forgot to test. Let me see. There has to be some mistake!"

I handed him the pump and told him the only mistake was his in forgetting most of his care. He had only bolused for one meal that day and that was the meal that I bolused. Things would change I reminded him as I walked out of his room.

Outside, I wanted to bang my head against a wall. Oy!! We really do make one leap forward and six shuffles back. Teens really do have minds of sieves. Its back to observing and not just reminding. Its hoping that one day some of what I say will sink in and mean something. One day I hope my voice will be more than the squawking sound of Charlie Brown's teacher.

My take on the Artificial Pancreas Project

2011-11-15T19:34:00.000-03:30

The other night we sat in on a lecture about the Artificial Pancreas Project. In all honesty, I have paid very little attention to this project. I heard the hub-bub when the JDRF announced that they were funding research that was not cure based. I have seen the online petitions asking for the FDA to move the project along a lot faster. Other than that I have been fundamentally ignorant.

I have however slowly worked to educate myself whenever possible. I had many concerns about the project and looked forward to learning and seeing if my fears were founded. Sadly I think that they are.

Dr's. Anhalt and Krishna (his first name but his last name is far too long and complex for me) explained that the project had many levels. They were working on simply suspending insulin during a low and ultimately reaching the point where they could truly close the loop. Their main focus at the moment was to see a viable product on the market sooner rather than later (within 4-7 years). The bringing together of glucometers, CGM, insulin pump technology and human intelligence was a huge obstacle. These things work fabulously apart but bringing them together brought many new issues. To make matters more complex, regulatory bodies have never before been asked to rule on the safety of medical devices that make decisions like this one will.

For me, one of the obstacles to an Artificial Pancreas as I envisioned it was the number of sites and devices that one had to carry and use. I asked how this was to be handled. They stated that it was a real challenge. You cannot get down to only one site (which my son would want) because you cannot deliver insulin and measure glucose levels in the same area. They would work towards one device but felt that the loop may never truly be closed. It was also stated that artificial intelligence would not be put into the system in the foreseeable future.

Another issue is in the fact that sensors lag behind in what they say the blood glucose level is. Insulin lags behind in its action time. There is no way, at the moment to get immediate results to immediate problems. We need more accurate and timely sensors as well as faster insulins. To date there is only predictions and educated guesses. This is very concerning to me.

Larry voiced his concerns as well. At the moment we are talking about devices "talking" to one another. We have so many devices that we use on a regular basis, how could we be guarenteed that they would not interfere with one another? He wondered how my son could sit in his room with his cell phone, his laptop, his XBox head set, his pump, and his CGM and not have any of it interfere with each other. We were told that this was a real concern. At the moment they were working to secure specific radio frequencies to ensure that there would be no interference but we still had worries.

My final concern, and the concern of many others in the room was cost. This is a huge project. The actual dollar figures were not available but we all knew that it was way more than what we had in our pockets. Some of the cost of the project will most likely have to be recouped in sales at a later date. Would the Artificial Pancreas then be out of reach to those who need it most?

We were assured that the JDRF in the US was working with insurance companies so that when the product did come to market, they would cover the device. This does not help those of us in Canada. Our system works differently and while it is important that private insurance companies are onside with this device, it is even more important that provinces recognize its value. Who will be working on that angle? Currently we are asking our governments to cover the pieces--pumps, glucometers, CGMs and supplies. Will they cover the Artificial Pancreas when it comes to market? We can hope.

While there are many issues to be overcome, the project does have some positive points as well. Moving forward with sensor technology will hopefully provide us with more and better data on blood glucose trends. This data can be used to keep A1c's down and reduce the chance of complications. These same sensors can ideally act as our watchdogs at night. They can wake our children or ourselves when a blood glucose level is rising or dropping to a dangerous level. That is one thing that would help this mother sleep a lot easier at night. Now to just convince my son that this would be a far better system than him building me a room in his house!

Dear Government

2011-11-10T08:46:00.001-03:30

Those of us in the Diabetes Community are quite well aware that November is Diabetes Awareness Month. For years, I have found something new and unique to do each year. I have sent out general information letters to everyone I could think of, I created a book of the faces of diabetes with real people and their real stories, I have gotten a tattoo, and much more. This year I decided that November was the perfect time to get back to a focus that is very dear to my heart--advocating for increased access to devices and supplies for people with diabetes.

November is a great time to do this because of course its Diabetes Awareness Month, but it is also the month after our new government formed and a time when they are beginning to plan for the spring budget. I wanted politicians in my province to be thinking diabetes before they sat down to spend my money. The following is the letter that I will be sending out to all Members of the House of Assembly. If you live Newfoundland and Labrador, I would ask that you copy this letter and send it to the Minister of Health, the Finance Minister and your MHA (if you have a newly elected MHA, their contact can be found on their party websites). I would then ask that you copy it and send it to your friends and have them do the same. Public pressure works and we need to change this program. If you don't live in Newfoundland and Labrador, please feel free to copy this letter and tailor it to your own needs. While a cure is ideal, until it is found our loved ones deserve access to the best equipment out there to keep them alive!

November is Diabetes Awareness Month. There are now almost 3 million Canadians living with diabetes. Approximately 10% of those are living with Type 1 diabetes, an autoimmune disease that attacks the insulin producing cells of the body leaving the victim reliant on an external source of insulin to live. A person without insulin is like a car without gas, their bodies cannot function and they will die.

In Newfoundland and Labrador, people living with Type 1 diabetes currently are able to receive their insulin through the best available delivery system—an insulin pump. This small life sustaining unit allows the user to pre-program their insulin needs into a computer which will then delivers the insulin to its user at specific, minute amounts throughout the day and with meals or to combat high blood sugar levels. When a person with Type 1 diabetes reaches 25 in this province, they must either have the financial resources to pay the extra $5500 per year for an insulin pump and supplies or go back to a less reliable method of insulin delivery through injections. We hope that soon the government of Newfoundland and Labrador will see fit to change this and join Ontario in extending its pump program coverage to all of their residents with Type 1 diabetes who do not have private health insurance regardless of age.

Despite the advances in technology and the availability of insulin pump therapy to manage Type 1 diabetes, on November 2, 2011 the American Juvenile Diabetes Research Foundation publicly noted that one in twenty people living with Type 1 diabetes will die because of a low blood glucose level (this occurs when there is too much insulin in their body and not enough sugar). This number is unacceptable. In a technologically advanced society such as ours it is also unnecessary. Beyond the incredible emotional strain that this threat puts on families and people living with diabetes, such a high mortality rate also has a large financial impact in provinces such as Newfoundland and Labrador which have exceptionally high incidences of this disease.

This number can be changed. A cure is the most glaring way to “fix” this problem. A cure would eliminate the need for government funding of insulin pumps and subsequent spending on diabetes related complications. Many great organizations throughout the world, including the Diabetes Research Institute work solely on this mandate.

Until a cure is found, another way to reduce the number of low blood glucose related deaths is to provide real access to the technology that is available which would protect all people living with diabetes. Recent advances in pump technology offer suspended insulin delivery when a person is already low and non-responsive as well as Continuous Glucose Monitors (CGM) which “speak” to the insulin pump. A CGM is a computerized device worn by a person with Type 1 diabetes that monitors the trends in blood glucose levels. It tells its user when they are in danger of having their blood glucose rise or fall. These predictions help to maintain a stable blood glucose level which reduces long term complications. The alarms also help to ward off dangerous lows that will render the person with Type 1 Diabetes unresponsive or dead.

According to a 2009 Canadian Diabetes Association report on the economic costs of diabetes in Canada, the indirect cost of diabetes related illnesses and death was approximately $8 million in 2010 and another $3.1 million in direct cost. Those living with Type 1 diabetes are responsible for 40% of these costs. The funding of insulin pumps and continuous glucose monitoring can dramatically reduce this economic burden. Insulin pumps have been shown to significantly reduce hospital visits by people with diabetes.

As November is Diabetes Awareness month, I would invite this government to learn the facts about Type 1 diabetes. This is a silent killer that is claiming one in twenty people as its victims on a regular basis (after drafting this letter we learned of yet another young person who died because of hypoglycemia during the night of November 9^th). This number can be changed. It has to be changed.

With proper tools, education and awareness, people of all ages with Type 1 diabetes can live to be productive healthy members of our society. I would ask that you review the provincial insulin pump program and look to expand coverage to cover all people who live with Type 1 diabetes who do not have private insurance for both insulin pumps and continuous glucose monitors regardless of their age.

Sincerely;

Barb Wagstaff

(mother to a 14 year old with Type 1 diabetes, diagnosed March 2000 age 2)

Warm beds and Dead sites

2011-11-09T10:59:00.000-03:30

Do you know those moments when you are half asleep and you cuddle right into your partner? All is right with the world. Its warm and safe. Life is good...and then you realize that you have a child with diabetes who needs to be tested. You fly out of your loved one's arms and hurry to get to your child's room.

Yes, that has happened in our house...on a number of occasions. Last night I jumped away from Larry and raced out of the room. It was 4:30am and I had not woken at 3! I stumbled into my son's room and was out of sorts for a second. We had moved his furniture around the day before and he wasn't where he was supposed to be. Once I woke enough to remember the new layout of the room, I turned on his lamp, grabbed his meter and got ready to test him.

He mumbled something and I assumed he was talking in his sleep. He mumbled something again and then showed me a piece of white mush. It was his site. He had rolled over when I came in and the site fell out. Crap! I had to be a lot more awake for this. I handed him the meter to test while I found the supplies for a site change. I was pleased to see that he was only 9(160) when we tested but feared what the failed site would bring in a few hours.

Together we changed the site. When all was said and done, my son rolled over to instantly fall back to sleep . I stumbled back to my room in hopes of getting back to the spot where I should have been. As I crawled into bed, I felt bad for Larry and very grateful for his presence. He had no idea what he was getting into when he became involved with a mother of a child with diabetes. He didn't know about the crazy hours until he started living with it. He didn't know that many times his snuggling into me would wake me at an opportune time to test my son when I would have otherwise continued to sleep. I am sure he grumbles as he goes to cuddle into me and my body slips away to another room leaving him with nothing but a warm pillow.

On the other hand, I am very grateful for this. This is yet another occasion when his cuddling has allowed me to catch a problem before it became dangerous. My son seems to quickly elevate to ketones and vomiting lately with high blood glucose levels. The 1 in 20 statistic has deepened my fear of nighttime lows. With my second guardian angel around to help me wake at night we will beat this thing and keep my son healthy!

One in Twenty

2011-11-05T11:27:00.001-02:30

Recently the JDRF in the US took out an ad in the New York Times and elsewhere that has generated a lot of talk amongst people living with type 1 diabetes. It simply stated that 1 in 20 people with type 1 diabetes will die because of hypoglycemia. It was geared to speed up FDA approval on the Artificial Pancreas Project.

The fact that people die because of hypoglycemia is not disputed. Those who have diabetes living in their house are well aware of its dangers. We remind our loved ones to test and be in range before driving anything from a bicycle to a motor vehicle. We wake up multiple times throughout the night to test and make sure that our loved ones are safe. We know that diabetes is a deadly disease.

Many were shocked at the figure however--1 in 20. Many of us have hundreds of friends with diabetes listed on Facebook. A quick scan would mean that five of every one hundred people we know will die of hypoglycemia. That is terrifying. It brings the worry and the desire for a cure and better treatments to a whole new level.

Is that a bad thing? Jessica Apple discussed this in her recent post. She suggested that November not be a time of feeling good and turning things blue but asking for change to save lives. Over the years I have taken this same approach--take no prisoners and show the down side. Yes my son can do everything his brother can but.... and its the but that should not be there. Its the but that allows him to live. Its the "but" that we need to change.

Its a fine line however in giving your child hope and showing the world the darkness. I like the power of the JDRF ad but fear my son seeing it. While I present the dark to politician and the general public, we focus on the positives at home.

As a parent though, when I stop, personalize the statistic and think of 20 children with Type1 diabetes including my son and then realize that any one of them including my son will die of hypoglycemia? I just can't go there. I cannot spend more than a second on the thought. It makes me ill and shakes me to the core. My heart is crushed and I am terrified. Maybe that is not the worst thing either.

That fear motivates me to work harder. It makes me want to spread information to a larger audience. It makes me want to focus more on ensuring access to things like pump therapy and a CGM for my son and the 19 other children (of all ages) whose lives could be saved by better technology. It also makes me want to take a harder look at the work of the DRI and other groups who claim to be working for a cure.

One in twenty people living with Type 1 diabetes will die because of hypoglycemia. That stark number needs to change. We can work to prevent this. We can work to "fix it". As a parent, I cannot fix my son's body and take diabetes away from him but I can work to fix a system that keeps lifesaving tools just out of reach.

This disease is serious. We need to be equally serious about keeping out loved ones alive and providing everyone with access to the tools to do so. We would not deny someone who could not walk a wheelchair. We cannot deny someone who cannot produce insulin the tools to deliver and monitor this lifesustaining liquid.

A Faulty Pancreas Lives Here

2011-11-03T09:43:00.000-02:30

Last night I was sitting at the kitchen table with my youngest son. He was doing his math homework. As we worked through the page, I began to get frustrated. He seemed to truly understand what he had to do but when pen went to paper the answers were just plain wrong. I had left him to do a few questions on his own. When I came back, I saw that the answers were not correct and asked him how he came up with his responses. He told me how he needed to figure things out. The process was right but the results were a disaster.

We joked as we went along that he must be out of range. He was making foolish mistakes. I chalked it up to rushing through. As we progressed 14-7 equalled 5 and I knew that there was something seriously wrong! He looked a little pale and finally he took it upon himself to test. He was 19(345).

"That explains it! I think its time to take a small break. Show me some of the other homework that you have done while we wait for you to come down." I told him.

He got his other homework and a new infusion set. It turned out that his site change was due the day before. I had woke him up early that morning to change the site because he had gone up a bit overnight and I assumed the site was bad but being my son...well he didn't do it.

Each year I talk to parents and educators about children with diabetes in schools. Each year I mention this very thing--children who are hyperglycemic are cognitively impaired. I have seen it is effects in my son on occasions before. Each time it happens it both amazes and scares me.

You cannot see diabetes. You cannot "see" a high--well if you know him he might look a little off but still for the most part it is invisible to the naked eye. The average person would just assume my son was not overly intelligent. An uneducated teacher would assume he just was not getting the concept, had not paid attention or had not studied.

Each time this happens, I see the reality. My son cannot fix this. Yes he can change his site but highs will occur for other reasons that he cannot control. Diabetes does not play nice. It does not show itself to the outside world. There is no gaping hole in his stomach area to show that his pancreas has failed. It just quietly impacts his life. It silently attacks and as parents we must continue to work to train those around our loved ones what these attacks look like and how to handle them. Until there is a cure, we can only educate and pray for the best.

Glucose in the bathroom

2011-11-02T09:26:00.000-02:30

November is Diabetes Awareness month. Many people are wearing blue on Fridays to raise awareness, Facebook pictures are appearing with blue circles posted around them, and others are gearing up for the Big Blue Test.

Another awareness initiative that has been suggested was "30 days and 30 wishes". The idea was to take the 30 days of November and each day publish a diabetes related wish. The first day, I asked the question of what your wish was for day one on my Diabetes Advocacy Facebook page. The overwhelming answer was "A Cure!" plain and simple. That one is a given so my wish was posted in yesterday's post--that my son did not have to worry about his blood sugar before bed or know the danger of going low in his sleep.

Today's wish is that we did not have to have glucose stored all over the house and in our car. As you can see by today's picture, my son believes in being prepared and recently has begun keeping a tube of glucose gel in the bathroom he uses to get ready for school and shower. Now I just wish that I knew what in the world possessed him to put a tube there!

Another bump in the diabetes learning curve

2011-11-01T10:29:00.000-02:30

My son came home from school yesterday and we talked about what he had done during the day. He told me about having whipped cream thrown at him by little kids and showed me the treats that he had been given. After our chat, I asked for his meter. I looked through it and saw that once again he had not bothered to test after his breakfast. His first test was at lunch time and he was 23 (414). I was not impressed.

"I am guessing that not only did you NOT remember to test, but you also forgot to bolus your breakfast didn't you?"

"Now Mom, would I do that?" He asked innocently as he began scrolling through his pump history. "There is a bolus here at 7:30. Oh wait, its just a correction. There doesn't seem to be a breakfast bolus. Oops."

Once again I reminded him to test AND bolus. He went off to do his thing and I was left to shake my head. I felt a little guilty because I knew that I hadn't given him the carb count for his meal that morning but I also know that he is pretty good at knowing it on his own. End of guilt. He messed up.

Before I went to bed that evening, I asked him what his bg level was. I use that number as a gauge of when I should set my internal alarm clock to get up during the night. He said he was 4.1 (73). I asked him what he was going to do about that. He said that he had had a glucose gel. I thought that that might have been a bit much since he had eaten a snack not long ago and asked him why the gel?

He replied, "Never drive when you are under five and never sleep if you are under six!"

Well he could certainly regurgitate the information that I have given him over the years but when would he actually use a bit more of it? I responded, "Great, you can remember the rules but you can't remember to test and bolus in the morning?"

I rolled my eyes and left him to deal with his four (72) while I headed off to read. The next morning he asked if he had been high the night before. I said that he was. He said that it had taken him a lot of glucose to move past 4.1 so he was glad to see that at one point the sugar finally kicked in. Poor kid. What a thing to have to worry about before he could think about sleep.

The missed test and bolus in the morning didn't kill him. It could have been worse--he did correct the high before breakfast and did correct before his lunch. We still have a long ways to go but its also good to know that we are making some progress. I still wish however that my son and I did not have to have any of this knowledge--that it was not so important for him to have to learn.

The Things that I have learned from Halloweens past

2011-10-31T09:20:00.000-02:30

Its a rainy, windy Halloween morning. One of my son's is curled up in his bed waiting for the power to return to his home and my youngest son is off to scare little children during Halloween events at school. Such is the life of family with teen aged boys.

At this point in our lives, Halloween is no longer about treats and goodies. We have begun to enjoy a few Halloween decorations and waiting to see what little ghosts and ghouls will arrive on our doorstep.

What to do about Halloween parties at school and big bags of Halloween candy are no longer issues in our house. Reading worries from parents of children who are relatively newly diagnosed made me think that perhaps a recap of some of the things that I learned over the years may not be a bad topic for today. So here we go....

1. Its okay to let him eat candy while he is out trick or treating. In fact, it should be encouraged (as long as usual Halloween safety rules are applied of course--Mom/Dad checks candy or it is from the home of a good family friend). All of the walking, running and general excitement would always drop my son's bg levels. Letting him eat bars, rockets (Smarties for my US friends) and other treats was a fun way to keep him in range and allow him to be a "normal" child.

2. Snack sized Halloween treats are fabulous for lows. Chocolate bars work for those evening lows that aren't lows yet but will be and a slow release of glucose would be ideal. Rockets and Starburst are great for keeping in your pocket or purse for those lows that need immediate sugar and your child thinks that they have one the little kid lottery!

3. Snack sized treats are often equivalent to one fruit for anyone who may still use and exchange system and what child will not exchange a fruit for a bar? Well, my kids but they are weird!

4. Snack sized chips are often equal to a slice of bread. Again, for those on the exchange system, you can skip a slice of toast or a potato and switch in a bag of chips for the day as a special treat.

5. Mom and Dad will eat the bulk of the candy. My children had candy that would last until Easter and beyond. Parents would gain weight while the children carefully savored each morsel.

6. For those who have kids who will either not eat the candy or would overindulge, many parent exchange the treats through an Easter Witch or Great Pumpkin. The treats are left out and gift cards or trinkets are delivered in exchange for the treats. I have also heard of treats being packed up and given to homeless shelters or hospitals.

7. No matter how old your child is, he/she will most likely still want some of those treats. The carb counts are now on most candies and for those that are not, there are many great resources that provide the counts on many other items so that your child does not "have" to go without on Halloween.

Halloween was a great time for my boys. We drove all over the neighbourhood, met up with pals and had fun racing across lawns and warming up in cars. Diabetes did not change this for them. It meant that we brought a meter on our adventure. Insulin was nearby but not always required. Basal rates were often dropped later that evening. Sandwiches were packed but usually exchanged for hot dogs or chips for just this night. Juice boxes were a bonus when given out at the door as they added extra glucose to get to the next house.

This year my youngest son will be greeting the little ghouls and handing out treats. He will be counting each child and hoping that we will have more treats than children so that he can enjoy a few bars for himself. He has great memories of Halloweens past and to me that is a sign of successful diabetes management.

Mom I did a bit of tweaking

2011-10-28T09:34:00.000-02:30

"Can you bring me your meters please?"
My son came out of his room with three glucometers for me to review.

"Mom, I have made a few tweaks of my own."

"Oh really? What did you change?" I asked rather intrigued.

"Well I have been coming home low the past few days so I figured I should make some small changes and see how it goes. I adjusted my basal rate."

Basal rates? Those can be tricky. "When were you low and what time did you set the adjustment for?"

"I am low at about 3pm so I brought the noon rate down a bit."

Holy cow! I am impressed. He had been listening and learning after all! "Are you sure its not a carb to insulin adjustment? How long after you eat does this happen?"

"I am not positive but this seems to be working. I was in the twos (low 40s) for a few days and today I was 3.8 (64) when I got home."

"Okay, keep an eye on it and if you are still low try the lunchtime carb ratio."

With that my son headed downstairs to have his shower. I was still in shocked and very impressed. He was taking charge of his diabetes care! He was making the changes as they needed to be made without my help and doing a great job of it. My little boy was growing up!

I turned to the meters to see what else was going on that I didn't know about.
Ugh! Missed tests at school! One morning test out of four. I was not happy. I reminded myself that he was making strides in one area. Baby steps, baby steps.

It would be a miracle if he was actually doing everything he was supposed to. I did not freak out completely. I did not take away privileges. I did suggest what could happen if he forgot again but for the most part I just tried to bask in the glow of the "Mom I did a bit of tweaking on my own".

Diabetes Hangover

2011-10-27T13:06:00.000-02:30

My son has complained of a "glucose tab" hangover after I treat him for a nighttime low. This morning I realized that diabetes gives me my own kind of hangover.

Last night something happened that I never expected. I should have remembered that we are dealing with diabetes and it is never predictable but I was complacent.

I woke up at 1:30am ready to test until I realized that it was a bit too early. I rolled over to sleep for another hour. The hour became an hour and a half but my son was still fine(8 or 136). I felt confident that basal rates were working. He had been low the night before and I had made adjustments. Life was good and I headed back to a peaceful sleep for a few more hours...or so I thought.

At 5am Larry woke me up. He said that my son was up using the washroom. He never does that during the night unless there is a problem so Larry knew I should be getting up. I did and asked my son if he had tested. He had and was 17 (289). What the??? His bg level had more than doubled in just two hours!! Something was seriously wrong! I told my son to change his site. This was way to fast of a spike. He told me it was fine , corrected and rolled over to go to sleep.

I went back to bed second guessing myself. Did I miss a low at 1:30? Was he alive thanks to a rebound? If he rebounded there would be hell to pay the next day with highs and fears of another low. Was the site bad? Was the new pump failing already? I eventually managed to fall back to sleep, but not for long.

An hour later I awoke to the sound of vomit hitting the toilet bowl. This was so not good! I had been right. My son was not getting insulin. The site must be kinked. Again, I got up and waited. My son looked terribly pale. I told him we needed a new site. He had one in his hand.

"I can't believe I would be throwing up at 17." he said.

I told him that he had probably gone up in the past hour. We tested and he was now over 19 (+323). We chanced a correction on his pump and both went back to sleep for a few minutes. At 7am I tested him again. He had dropped down to 14 (238) and said he felt a lot better. He was no longer a ghostly white so we decided he was okay to go to school.

I still am not positive as to what happened. His site looked fine when we took it out. Despite a trip back to bed after my son was ready for school, I still felt out of sorts. The night continued to haunt me. Questions plagued me. Where had I gone wrong? As things ran through my head, I realized that like my son's glucose hangover, diabetes gives me its own hangover. It messes with my emotions and my physical being the next day and then some. Sadly there is only one fix for my hangover and that's a cure for diabetes.

The Lost Test Strips

2011-10-25T19:38:00.000-02:30

It was recently that time of year again...time to clean out our diabetes supplies. What once was able to fit in a drawer was now taking up a drawer, a roll-out tote, and underneath of my youngest son's bed. This had to stop. I had no clue that he had supplies hidden in all of these places and was no longer sure as to what supplies we had and what we needed.

We found boxes of Cozmo reservoirs, a few different types of infusion sets, his very first meter, a Polar bear meter holder, way too many lancing devices and enough lancets to keep him going until he is 100. We also found test strips that were about to expire. There was no way I was going to waste these strips. This was $100 and many people can't even afford to buy them. The strips would be used at home until such time as they were gone.

My son was fine with that. Like his mother, he loves trying out new meters. This meter was far from new but since he hadn't used it in a few years, it was new to him again. The novelty quickly wore off.

"Mom, this meter takes FOREVER to read!"

"How long is forever?"

"15 seconds! Can you believe that? This is crazy!"

I started to laugh! My son was far to used to the immediate gratification found after a five second countdown. He did not remember the days of his first meter. Thirty seconds seemed like an eternity and yet I remember back then knowing how lucky we were, the previous generation of meters had taken 60 seconds to show results.

Despite the "long" wait, he continued to use the old strips. A few lows and bad sites meant that it did not take more than a few weekends for the 100 test strips to be used up. I must admit that I had been spoiled too. A few nights of having to wait for those extra 10 seconds did seem like forever. Nonetheless, it still was not as long as waiting 30 seconds and wondering if your toddler was asleep because he was tired or passed out from a low.

I love technology!

Eating your young or life as a harp seal?

2011-10-23T18:09:00.000-02:30

Last night I woke up later than I should to test my son. I cursed at myself as I stumbled in his room and was grateful to hear the soft sound of snoring coming from his bed. The test showed that he was high. Did he change his site like I asked him? I checked the history and yes he finally had. While I was up I checked his meter history. The meter I was using had my tests only. Hmmm...I found a second meter. It was still seriously lacking some readings but it appeared to be his meter of choice for the weekend.

I silently fumed. He had missed more tests than he had done. I had specifically told him at points during the day to test and nothing was done! I knew he ate a bowl of popcorn at around 10pm and no test before. I once again felt a kinship to those animals that ate their young. They had it right I was certain!

I headed back to bed trying to put my frustrations out of my mind so that I could fall back to sleep. It took a bit of work. This weekend we had been focusing on school not diabetes. I had believed my son when he told me he was studying. I trusted him when he swore he knew the concepts for the upcoming exams. I had allowed him to read his novel at his own pace not realizing that there was a book report that would soon be due.

Freedom was short lived as my son came home with low marks and a novel with three chapters read that was to be finished and have a book report completed on it in less than five days time. I was so not impressed but tried to appease myself with the fact that he hadn't lied about the horrible marks. With a math test looming and a book report that had to be completed in short order, his weekend plans of Xbox and Beverley Hillbillies was derailed by his mother. It was time for him to be put back on a short leash. Homework first, play when Mom says its okay.

All of this now played on my mind. I had been harping about school work, now I would complain about diabetes care. Do I ever stop? I must be sounding like Charlie Brown's teacher by now. There is no way he will pay attention to anything I say. How will I get it to sink in? Yes, eating my children when they were young could have saved me these problems.

I finally wound down and went to sleep. The next morning I calmly discussed the issue of testing with my son. Will he change? Did he hear me? Will he pay more attention to testing? Will I harp on his a little less? Probably not to most or all of the above. I will try not to nag but will continue to remind him and provide consequences for his actions--or lack of them. Oh the joys of parenting!

Another one bites the dust

2011-10-20T19:08:00.000-02:30

My son came racing up the stair yesterday with a "get out of the way, I need to use the washroom" look. I asked what was going on.

"My pump is sirening!"

Crap. The pump is new. This is not a good thing. "What exactly do you mean by sirening?" I asked as the pump promptly screamed.

"Sirening." He stated.

Well that was just not good. I took a look at the pump and the battery life was on zero. I assumed that was the problem and put in a new battery. All was good to go. Catastrophe averted...or so I thought!

This morning my son was heading out the door as he bolused his breakfast. Suddenly he came running back up the stairs.

"Its sirening again!" Now that was bad timing! We quickly grabbed his old ice blue Cozmo, switched cartridges and sent him out the door. The upside to this happening so close to the last Cozmo death was that the old pump still had close to accurate basal rates.

A few hours later I called Cozmo customer support. A gentleman answered my call and suggested that the battery cap could have an issue. I reminded him that this pump was pretty new but he still said it could happen and that it had occurred in his own pump. He said to put a new battery cap on, put in an empty cartridge and let the pump run for 24 hours on its own. If it didn't siren, then we could hook my son back up. That worked for me. I hung up and did as he suggested. The pump asked to resume the breakfast bolus and I said yes. It began to siren again. Well, that was not going to do. I called the helpline right away.

This time I spoke with a woman. She asked me if I had spoken with D on a previous call. I said I didn't remember his name but I guessed that their staff was pretty limited and it probably was him. She said, that the staff was the two of them. Since I had just called and the solution wasn't working, she was ordering us a new pump. She remembered the problem I had getting Sirius Black (she was the woman who took my complaint about the slow service) and expressed her own dismay. She said she would do everything she could to make sure that this pump was replaced promptly. I was once again impressed by their customer service and began mourning the inevitable loss of this great pump company.

At the moment my son is back to using his trusty ice blue pump. He has Sirius Black up and running on air. He has bolused it a few times with no problems and began to worry. "Mom, if we send this pump back and its not sirening any more, will they just think we are a bunch of whack jobs?" I assured him that based on past experience, the pump will siren again at one point and that they will not think ill of us for sending it back.

For now we wait for the lastest replacement, wonder what color this one will be and say an extra thank you that the pump still under waranty. The thought that next year we will have to replace him with a completely new pump company still makes me sad but I will cross that bridge when it arrives...sniff, sniff.

Thankful for Nightmares!

2011-10-19T16:41:00.000-02:30

Last night I went to bed and, for a change, fell asleep right away. It was wonderful! My son was running a bit on the higher end of okay and sleep was my friend...or so I thought!

After a few hours of peaceful slumber, I began to dream. The dream was strange and twisted. I finally awoke after a few minutes (that seemed like hours) of terror, violence and mayhem. I hadn't watched anything scarier than part of Gene Simmons' Family Jewels, and I hadn't had anything to eat. I had no idea why I was awake but awake I was and still shaking!

It was only 1:30am but I decided to get up, shake off the heebie jeebies and test my son. I stumbled to his room first, found his meter and got an error. Grr!! I was now out of test strips. Next meter! Grabbed another one and waited for his reading. It was 3.3 (60). Where did that come from? I began searching his room for glucose. He had tablets but only green apple. I had been reprimanded recently for improper use of the coveted green apple tablets. I was told that I should not be wasting these awesome tablets at night when he would not remember them.

With that in mind, I headed to the kitchen to grab some of the more acceptable night time tablets. I fed him in his sleep and waited. I was still shaking from the dream. I was dying to crawl back into my bed, cuddle in and make the horrible feeling go away. I was also extremely grateful.

Again, I had no idea why I had this dream. It started out nice enough and ended up being horrific, but I was so glad that it happened. Normally I would not wake up until 2:30 or 3am. I didn't dare think about that could have happened if I had waited.

That was not the first time that I had been woken by a dream, a strange noise or the call of bodily functions. It was not the first time that an interruption to my sleep had caught an unexpected low. I am not the only person that this happens to but I can guarantee that every one of us parents of children with diabetes who have been woke by a nightmare or a rollerskating Indian say a heartfelt prayer of thanks when all is said and done!

Its the bird's fault

2011-10-15T20:43:00.001-02:30

Last night was a lazy night after a busy week. We were getting ready for some popcorn on the couch and my son was testing his blood in his room. Suddenly I heard a huge crash! I went to see if he was still alive. He swore he was and that he had just tripped--no big deal.

I trusted that all was okay and headed back to the popcorn and a phone call to my mom. As I was on the phone, my son calmly shows me his glucometer...1.3(23). I tried not to panic as I followed him into the kitchen, told him to drink that juice pronto and sit down for heaven sakes!! I ended my call and continued to watch him as he sat in the living room.

"Are you okay? Do you feel that low? Are you sure you are okay? Do you really think you are 1.3 or do you think its meter error? Are you okay?"

"Yes Mom, I am okay. Yes I think I am low but no I don't feel that low, just low."

"Do you think that the meter is wrong? Should we check?" I am praying for 15 minutes to pass quickly and am mentally reviewing where all of the glucagon kits are just in case.

"I'll grab another meter to retest."

My son came back with his AccuChek Nano and attempted to put strips for his Bayer Contour meter in it. I explain that its not going to work and fear that he really is as low as the meter said! We got out his LifeScan meter and test on it as well as the Contour that had produced the 1.3. He was back in range and the meters had similar readings. Larry was shocked that he was back in range that quickly. I explained that there still could be meter error in the 1.3 reading but my son had also just chugged back two big glasses of orange juice before sitting down in the living room. The aggressive treatment most likely stopped any further drop and brought him up nicely.

As I worked to breathe again my son explained that the 1.3 was not the first reading he received when testing. The first reading just said "LO". What the?????? Holy crap child! There went my breath! "LO" and he was still walking?!? There had to be a mistake but still "LO"!!!??? Holy Hannah!! I think that there was a reason that he only told me that little tidbit after he was back in range. He knew the panic that that would instill.

Once again, I tried to get back into recovery mode. My son was fine. He had not seized. He was back in range. This has not happened in his sleep. All was good. I finally asked him to help me to figure out how this had happened.

"Do you think that you messed up a carb count? Is your basal off? Do you think it still was meter error and you weren't nearly that low?"

"I was probably at about a 2.9 (50) rather than in the one's. I think the problem was with the bird. I think he scratched out the wrong number."

I looked at him and began to laugh. "The bird?"

"Yeah, the little bird inside the glucometer. You know? The one that takes the blood, figures out the reading, scratches it on a card and then it appears on the display screen."

I was weak from laughing. Larry thought we were even more strange than normal. I tried to stop laughing long enough to explain. "Remember the Flintstones? All of their "electronic" devices had little birds and creatures inside that were really doing the work. He figures that the bird inside the glucometer made a mistake."

Larry got it but still thought we were crazy. I was amazed at my son's insight and ability to completely change the mood of the evening. I can still see that little bird in the meter. Larry told my son to get a new bird. I just wonder where I managed to get that kid!

Its a new look!

2011-10-14T14:09:00.000-02:30

As you may, or may not have noticed, I have changed the Diabetes Advocacy logo. It will appear on the website in the coming months (as the site undergoes a face lift) but I thought that I would launch it here first.

Some of you may be looking at this new logo and wondering what sort of drugs I was on when I said "Yeah! That's what I want to use!" You may be thinking that I was exceptionally sleep deprived and forgot what sort of a website I was running at the time I accepted the image.

Or perhaps you never really got the first logo and figured, well its still just as crazy as before so what's the big deal?

The original logo had a phoenix wearing a grey diabetes ribbon with a map of Canada in the background. The diabetes ribbon was an obvious connection as was the map when you know that I live in Canada. The meaning behind the phoenix was not as easily interpreted.

The phoenix is a bird that rises up from the ashes. Its splendor is amazing especially when looking back at where it came from. Yes, it eventually burns out and becomes ash again but it will always rise again. This has become symbolic with my life and more importantly with life with diabetes. We have days that are good, days that are amazing and days that we feel that we have crashed and burned. For me the phoenix is a symbol of hope, because no matter what we will rise up from the ashes and be even more amazing and beautiful than before!

The new logo focuses more on the phoenix. Its power and its beauty. Diabetes is a nightmare but the friendships it has brought us are more beautiful than any of the ugliness. Diabetes brings hardships but it has also given me a strength to challenge issues and create change where I never would have gone before.

I have also given up the grey ribbon in place of the blue circle. I love the grey ribbon, not for its dark color but the drop of blood was a real reminder of what our loved ones deal with each day. Despite my attachment to that symbol, there is a movement for diabetes to band together and use one symbol--the blue circle that was adopted by the UN. There is a renewed desire to make this symbol as recognizable as the pink ribbon is for breast cancer.

I have no idea if this will happen but grey is making way for blue. We see blue candles lit in memory of who have lost their battle with diabetes. There are the campaigns to light up your home/town blue on World Diabetes day in November. Grey is drab, blue offers hope so I have traded in the grey ribbon worn by my phoenix and instead encircled him in blue.

With that in mind, it was time for me to change as well. It was time for a new logo, a new sense of purpose, and a new face forward in our rollercoaster life with Type 1 diabetes.

A moment of sadness

2011-10-12T11:41:00.000-02:30

Last night I woke up at 3am as usual. I grabbed my housecoat and headed across the hall to test my son. He was low. He had been high the night before but a site change and set things back on track...he was now low.

I decided against feeding him glucose tablets because of his aversion to the "glucose hangover". I headed instead to the kitchen to grab a glass of juice. Just in case, I added extra sugar. It was 3am and I really did not want to be up until after 4. Armed with juice and straw, I headed back to his room. I touched the straw to his lips and watched him drink it down like so many times before.

I went to my room to grab a book and my glasses. I had at least fifteen minutes to kill before retesting so it was time to get an Iris Johansen fix. I curled up on the couch and settled into my novel. I kept my phone nearby so I could see when my time was up. Fifteen minutes quickly passed. I slowly walked back to his room. I tested him and he was in range.

Normally I would remember the reading that allowed me to leave my book for the night but last night was different. It was overshadowed by a sadness. I don't normally allow any sadness or much pity to enter my life when it comes to diabetes. I have had a "no nonsense" approach since I learned my son would live. It has served me well for over 11 years. Don't get me wrong, at 5 am, after two hours of battling a low, I do still have meltdowns and the "why me??'s".

Last night, something different took over. It was a complete sadness. A sense of futility. I looked at my son sleeping in his bed. I knew how lucky we were. I was grateful for a five second meter. I appreciated the pump that kept his life almost "normal". I was glad that I was able to wake so often and catch both highs and lows.

All of that paled in that moment for some unknown reason. I looked at his sleeping form, peaceful and without a care, and I saw no end. I saw no end to the highs and lows at night. I saw no end to the testing--no end to the worries. I saw him becoming a man and carrying this burden himself. I saw him trying to balance the financial burden with his need for quality health care. For just that moment, there was no stopping the sadness--the desire to take it all away while knowing that you can't. I felt hopeless.

I slowly walked back to my room with a tear stain on my heart but in the morning I would be ready to face things again. We can only take each day as it comes, brush away the sadness, and hope for a better tomorrow.

Happy Thanksgiving

2011-10-10T11:38:00.000-02:30

Today is Thanksgiving Day for those of us living in Canada. Its a lovely fall day, with the leaves changing color and just a slight sharpness in the air. Its a day that I use to refocus on the positives in my life. For many years, I have tried to practice gratitude--you know that practice of stopping at the end of each day and count out ten things that you are grateful for? At this point in my life, I simply try to remember at least two things each night before I go to sleep.

There are many more than two or even tens things to be thankful for of course. I truly appreciate a warm bed, a roof over my head, clean drinking water and a hot shower each morning. There other things like access to medical attention, a good dentist and a lovely orthodontist that are also blessings in our lives.

Living with diabetes there are a few different things that I remain grateful for like the support of family and friends. As well as the support of friends who have become like family. The support of those people who "get it" and are there for me no matter what. The support of those people who work hard to learn and try to "get it". Their efforts mean just as much.

I am grateful for the work of Sir Frederick Banting, who's insulin allows my son to lead an active "normal" life. The genius who created our "Sirius Black" insulin pump that lent a new level of flexibility to our lives. The companies who worked to make glucometers provide results in a mere 5 seconds.

I appreciate the hair color companies more and more after each stubborn low. Without them, my hair would be a lovely shade of white by now. I also appreciate the makers of the Olay products and the various foundations used to keep the stress lines at bay and poly fill in those that make it through.

We often curse diabetes. Nightly we pray for a cure. We beg for a day without injections, testing, fighting, and fear. Today is a day to be thankful.

It is a time to be thankful for the work of so many who make our lives just that much easier. The people who have advanced our science to make it possible for my son and others to live longer, more fulfilling lives. The people who fight for equality in schools and in the workforce for people living with diabetes. Its a day to be greatful for the people who work hard to raise the money for research and those who use their know how to one day cure this disease. Today is a day to refocus, to count the blessings brought to us by diabetes and the wonderful advances that have made our lives just a little better than it could have been.

Happy Thanksgiving everyone!

Does Diabetes Control my life?

2011-10-08T14:43:00.000-02:30

The other night, as I was stumbling around in the hall trying to find the knob to my son's door and check his blood sugar level, I thought to myself "Diabetes controls my life." As I began to wake a little more fully I began to wonder about that statement. Did diabetes truly control my life? Had I allowed it to do this? Was it an excuse or was it the reality of living with a child with a chronic disease?

I asked people on my Facebook page what they thought. Did diabetes control their lives? One of the answers I received was "Anyone that has Type 1 that says that diabetes does not control their life, probably has an A1c of 10+. Unfortunately to have consistent and healthy blood glucose, it has to control a portion of what you do, it does not have to define you and let it impact your overall lifestyle."

Diabetes definitely controls a portion of what I do. It wakes me up at night. It keeps me up at night. It has changed how I look at food. It makes me gave me something new to associate the "Band Aid" smell with. It has changed many of my thoughts and actions.

My son's A1c has, to date, been under 10 so maybe I was safe. Maybe diabetes did control my life and that was not a completely bad thing but what is "control"? How do you define "control" over your life? I turned to Google for the answer. According to dictionary.com and Merriam-Webster, control can be defined as "to exercise a restraining or directing influence over."

Diabetes definitely has redirected my life. I have two sons. I have a Bachelor of Arts degree and spent several years prior to children working in the finance industry. My life plan prior to March 17, 2000 had been to go back to work when my youngest son started school. That plan was completely derailed.

I had always been vocal when I saw social injustice but diabetes sent me to an entirely new level. It caused me to fight all levels of government, learn about various social policies and as well as see many social inequities.

Diabetes has redirected our travel more than once. Our first trip to New York included a side trip to a diabetes family beach party. Our last trip across Canada included stops at the homes of friends who also lived with diabetes. Each year diabetes sends me to the Canadian Friends for Life Conference and it keeps me planning to go back to the Orlando FFL one day.

So had I allowed diabetes to control my life? Did I let it have a "directing influence" in my life? I guess I have. Part of me will say that I had no choice, I had to stay with my son. I had to fight for our tax credit. I had to expand my social network to find others who lived in our shoes. Part of me would be right but many people have taken a different route. Many parents have made different choices. My choice was to let diabetes become a very large part of my life. My choice was to try to change that little piece of the world...to make it better. Maybe diabetes controlling my life isn't the worst thing that could have happened to me but I still wish it hadn't come knocking on my son's door.

Lessons from Death of a Cozmo

2011-10-05T13:07:00.000-02:30

Things I have learned when our Lean Green Pumping Machine cracked for the final time and had to be replaced...
1. A break at the top where the cartridge goes in is a very bad thing.

2. The emergency number for those of us still clutching to our Cozmos here in Canada is the US toll free number.

3. When you call the toll free number they will tell you to call your doctor for a back up plan. Call our doctor? We used our first Cozmo. She was relieved...so was my son because "my" back up plan is inject the basal amount via injection every four hours until we got our new pump (ideally within 24 hours).
4. When you switch from the beloved green Cozmo back to the reliable ice blue, it would be a lot easier if the software still worked on newer computers.
5. Switching from the newer Cozmo back to the older version requires the brains of at least two people. Mom programmed the first 75% and child user figured out the other 25% rather than get out a calculator and do math.

6. "I think we are too late to get you this pump tomorrow" means be soooooo terribly glad that you have that back up ice blue Cozmo because it could be over seven tomorrows and three phone calls before the new pump arrives.

7. When you are dealing with a pump that the manufacturer no longer makes, the Lean Green Pumping Machine can and will be replaced by the first pump that they can still find on their shelves. On our case this means that we now are pumping with "Sirius Black" (Thanks Rhon!).

8. Remember to keep cartridges for your old pump. The number of tomorrows it can take a pump to arrive may not be as few as you remembered. Having your old Cozmo to rely on makes waiting for the new one so much better!

Our back up, Our dead Green Machine and the new Sirius Black all hooked up!

The lancet is thrown back

2011-10-03T13:56:00.000-02:30

As you may recall, my son was going to have to do his own night testing this past weekend. I had to have day surgery on Friday and was worried about how well I could handle testing him. My son was less than impressed with the new arrangement but agreed.

Friday night came and I was literally up every hour. He stayed up until 1:00am. I tested around 2:30am (because I was up) and found him low. Thankfully the anesthetic wasn't impairing me too badly so I stayed up, read, and waited for him to come back up. I eventually checked his alarm clock and noticed that he hadn't set it to wake up at three either way! He had felt that the 1am test would cover his night testing duty. Wrong! I woke him up and told him that he was on the 7am test because I needed to get some sleep. He reluctantly agreed.

Saturday night arrived and I again reminded my son to test. I was terribly sore and tired. I could really use the sleep. He looked at me with a pained expression and said "How much more of this do I have to do?"

I tried not to laugh. I reminded him that he hadn't tested Friday night because I had and I would make sure to do it on Sunday night so he had a decent sleep before school. I could visibly see the relief on his face.

Saturday night, he tested himself before he went to sleep. I woke up at about 2:45am and tested him. He was a little bit low. Not seriously low, but not where I would feel comfortable. I gave him some glucose gel and went back to sleep. He should have been up in 15 minutes to test. Thankfully he was. I tested him again when I woke at 6 and all was fine.

Sunday night he went to bed with a look of joy in his eyes. Mom was back on duty! He could sleep. There would no longer be the issue of setting an alarm. He was safe for a few more months at least!

You want me to do WHAT?

2011-09-29T14:05:00.000-02:30

I have some personal issues to attend to this weekend so I told my son that I will need his help. He will have to do his own night testing on Friday and possibly Saturday nights. He looked at me like I was insane.

"You want me to do what????"

I told him that because of things going on over the weekend, I was not sure that I would be able to test him Friday night and possibly even on Saturday. It would really help me out if he would set his alarm and take over the testing for those nights.

I continued to get the "deer in the headlights" look. I reminded him that when he goes to his father's he does his own testing...and he lives. I reminded him that I NEVER ask him to do his own testing. For almost 12 years I have gotten up throughout the night to check on him. I was just asking for a small bit of help in a special situation. He begrudgingly agreed.

I wondered what will happen when he is older. My son does not wake for lows. He only wakes to highs that have reached a point of ketones or dramatically increased urine output. In other words, he sleeps through 99% of his out of range readings overnight.

In speaking to a health care professional recently, he suggested that my son should already be doing his own night testing. I thought he was insane. My son is only 14. He needs his sleep. I have had broken rest for more years than my son has been alive. Its just part of my life now.

I know that not everyone does night time testing. I do. I always have. Its part of our diabetes care. One day my son will make his own choice about testing but until he is of age, Mom will make that decision. This means that I will test him at night. I will ask him to test when life will not allow me to do it and before he leaves my home (in another three or more years), I will work to get him testing on his own at night. Until then, well we will muddle through.

A "Diabetes Day"

2011-09-27T19:04:00.000-02:30

Out of nowhere, my son turned to me and said "Mom, I think its about time I took a Diabetes Day."

I had no clue as to what he was talking about. Diabetes is an every day kind of thing. Why do you need a special day dedicated to it?

"No. A Diabetes Day. You know like Joe said?"

Ah, a poor pitiful me day! A diabetes sucks and my life is horrible day! I remembered!

"Are you going to run over a meter?" I don't know why but I have issues with killing an innocent meter even if its for the betterment of my son's mental health. It just seems weird.

"I might."

Great! "You realize that you can't play video games all day. You have to lay in bed, watch movies and feel sorry for yourself?"

"I can do that" he tells me.

"Its nothing but ice cream all day and don't forget to have your friends call and tell you how wonderful you are."

"I have to have friends call me?"

"Yeah, remember? You are supposed to have them call you every hour at least and tell you how special you are. How tough it must be for you. How amazing you are to go through this diabetes routine every day. They are supposed to pile on the compliments and the pity like there is no tomorrow."

"Oh yeah, I forgot. Maybe I'll hold off on that Diabetes Day thing for a little bit more."

I simply shrugged and told him it was up to him. Inside I was letting out a sigh of relief that a meter would live for another day.

When he is ready for a Diabetes Day, I guess I will have to see what I can do to make it happen for him. In the meantime, we will just stick with Mom doing some of his care when he is tired of it. That seems to be working for us at the moment.

The strange language of Diabetes

2011-09-26T13:58:00.000-02:30

"You had better be high, Mister!" has been said to my teenage son more than once while in a public venue. People have looked at my like I was the world's worst parent. Who in their right mind suggests that its a good thing for their child to be high?

"That will be twenty, plus, thirty, and five, plus another twenty-two. Did you get that? Do you have the total?" said at the dinner table with onlookers wondering why I am about to "charge" my son for his meal.

"Are you using a temporary basal? Do you think it would be a good idea? Were you really active?" receives a strange look from friends and questions as to what in the world we are talking about.

"Did you fill my cannula?" results in "What's a cannula?"

DRI does not refer to the thrash band Dirty Rotten Imbeciles.
CDA is not just the Canadian Dental Association and when we speak of the CWD, we are not referring to Chronic Wasting Disease.

An insulin pump is not a cure, a pager or a cell phone. It is a medical device. Glucagon is not used when someone needs more insulin. Type 1 diabetes is not the "bad kind" its the kind that happens when your pancreas no longer works. No, his pancreas will not decide to work again at a later date. It gave its final notice almost 12 years ago and will not be returning to work until such time as it is forced to do so by a "cure".

Bolus, basal, cannula, carbohydrates--they are all words that we use every day. Bolus should not be "blouse" no matter what spell check believes. Basal is not basil. A cannula really is a small tube that is inserted into the body...no not surgerically but by a small needle that my son inserts and removes himself on a regular basis. Carbohydrates are a measure of food energy not just something of concern for those on Atkins.

The world of diabetes brings you into a world of new words. It takes commonly used words and changes them in a way that causes us to get strange looks from average people. We try to educate them. We try to help them to understand our language. Some try to get it, others just give us that blank look and we know that nothing has sunk in. Despite that, we go on knowing that we will continue to use these common words in our strange way until a cure for Type 1 diabetes is found.

My son is Channeling Dr Seuss

2011-09-21T12:39:00.001-02:30

Yesterday we went to our regular diabetes clinic. I love my son's new endo. She is young and interesting. Mainly though, our trips seem to be give blood for our 3 month diabetes report card--also known as his A1c.

This time around the endo asked my son how he thought his diabetes had been on a scale of 1-10. He gave it an 8. When she left I said "an 8?"
"Yeah, I would have said 7.5 but I thought I would bump it up to an 8."

I laughed and said that diabetes had been rather miserable for most of the summer. I also said that his testing was a little less than an eight as well. He just shrugged his shoulders and grinned.

As we drove home, we discussed the long wait time. It took over two hours to speak to the endo and then have the nurse draw the blood for his A1c. He said that the results of his next A1c should be even better than the last one. I was pretty shocked by that one. His last results were pretty awesome considering we are still living in the middle of puberty's hormonal nightmare as well as the teen age desire for greater independence and automony. I reminded him of the bad sites and highs he had experienced over the summer. I also noted that when he was away on his own, he was not always stellar about his care

With that, he quickly became Dr. Seuss and told me how wrong I was.

"Me? I always test! In fact, when Dad would say, Who made that mess? Well I would look around and say, Test? Test! Of course, I will go and test!

If Dad said, Son, you are being a pest! I would immediately respond, Test? Test! Of course, I must test!"

My sides hurt. I shook my head. I some days wonder where he came from. I will remain less optimistic about his upcoming A1c but will definitely start using a few more words like mess and see if it still prompts him to "test"!

Hi Ho, Hi Ho, its off to the polls we go!

2011-09-19T16:31:00.000-02:30

Fall is in the air, and here in Canada this means a large number of provinces are heading to the polls to elect new leaders. My province is no different. In October we will look towards a new government to steer us forward over the next four years.

I am not that psyched up about this election. I am quite sure that the governing party will again win a majority. Nothing much will change. Nonetheless, I was thinking about the issue that many people living with diabetes will bring to their provincial representatives--provincial coverage of insulin pump therapy. It is still a huge issue and far too many provinces are not covering pumps. Even for the few that do offer coverage, the provinces seem to think that at the magic age of 18 (or 25 in Newfoundland and Labrador) that people with diabetes will suddenly be blessed with ideal private insurance coverage or exceptionally lucrative jobs and no longer need to have provincial assistance.

Knowing this, I shook my head when I read an article today from the European Association for the Study of Diabetes. It confirmed the value of CGM for Type 1 Diabetes in significantly reducing the HbA1c in people who used real time systems. This means that a CGM is a valuable tool in maintaining and even improving the health of my son and others living with Type 1 Diabetes.

The problem with this is that we struggle to get our provincial health departments to cover insulin pump therapy. We tell them the huge financial benefits in the form of decreased hospitalization and improved control but still they are reluctant to cover this device. How do we now convince them that pumps AND CGM really do save and improves lives for people with diabetes? How do we make this an election issue? How do we remind them the value of a human life? How do we make them understand that money spent on this complete system will save them huge amounts in terms of reduced complications. Reduced complications means reduced stress on the health care system in terms of cost of dealing with such costly things as cardiac events and kidney disease.

How do we get them to understand that the cost of an insulin pump, CGM, and supplies for one person will be returned to them and then some in the taxes that these individuals will pay each year. These are not the dead beats of society. People with diabetes, like many others, strive to be productive, taxpaying members of society. It is much easier for them to do this when they are able to better manage their diabetes and therefore their health by using a insulin pump and CGM.

The way to convince them is to educate them. We must bring these issues up to our candidates. We pressure them to follow through on improving the lives of people with diabetes when they are elected. We work to garner the support of the next Health Ministers. We make sure that the future Finance Ministers of our provinces understand the financial benefits of insulin pump therapy combined with CGM, not just for our young children but for all of our loved ones living with Type 1 Diabetes.

1000 Words

2011-09-16T10:36:00.001-02:30

They say that a picture is worth a thousand words.

I was going through old pictures today and came across this one of my son taken over eight years ago. Seeing the expression on his face broke my heart. There are no other words....

Slack or Strict? That is the question.

2011-09-15T15:38:00.000-02:30

School has started and we are back to the same old routine.

"Did you test?"
Of course.
"Did you test two hours after your breakfast?"
I tested at 11am. Isn't that the same?
"You ate breakfast at 7. No its not the same. Did you test before gym class?"
I tested at 11.

THUD! The sound of my frustrated brain smacking against another wall. My son is 14. He is very, very private about his diabetes. He would be just as happy if no one had a clue that he had diabetes. Mom is not this way. Mom would like everyone around him to know and understand diabetes so that he is safe at all times. I want teachers to know that he is not drunk, lazy or stupid when he looks dazed and weak. I want them to run for glucose and ask questions later. I want people to understand that the six trips to the bathroom during Religion class was not because he really doesn't like the class but because he was high. I want them to understand that he is not wearing a pager, he is tethered to a piece of medical equipment that keeps him alive.

How much do I push him? His school knows that he has diabetes. I have spoken to most of his teachers over the course of the previous school year. I asked the principal to meet with them all again. She said they had a nurse come in before school started so there was no need but she would speak to his homeroom teacher about meeting with the teachers he specifically has. I have not heard from the teacher so yesterday I sent them all a detail letter about Liam's care. Personally, while the meeting with a nurse is wonderful, the individual needs and care of each student should be further addressed by having the parents of all children with diabetes attend this meeting. Because this did not happen, I went with the letter and hope to see a few of these people at the curriculum night.

Again, how much do I push things? The school will no longer set alarms for him to test. They want him to be self-sufficient and he is in grade 9. I am okay with this...in theory. I have thought of returning to our three strikes and your online privileges are gone routine but did it get me anywhere last year? Sometimes but it was not completely effective...he is still slipping into old habits this year despite the threat.

The slack part of me says, you know what? My son is really good at knowing when he is high or low. He will most likely "know" when he is in trouble. The rest of the readings just allow me to keep a respectable A1c level for him.

The diligent parent in me says, "Punish him! He will one day learn. He has to do this. Its the same as brushing his teeth."

The slacker response is that at some point I have to respect his desire for privacy. I have to give him the space to be himself rather than just the boy with diabetes, as long as it does not endanger him. This could mean allowing him to test as he feels he needs to.

Testing at 11 instead of 9:30am is so far not harming him. Its driving me insane but he is still alive to tell the story. I can continue to nag. I can hope that one day he will hear. I will work on breathing and not freaking out. I will look at alternatives to the three strikes...probably...maybe...well I will try.

Faces of Heroes

2011-09-13T09:03:00.002-02:30

Recently Reyna of Beta Buddies posted a great article on her life as a pancreas. I was worn out just reading it and then realized that it mimicked a lot of what our life has been for more years than I can remember. I began to think that maybe I should try that, to write out a description of my life. I still might but not today.

In viewing what her family does each day, I also realized something about my own attitude towards diabetes care. It has always been a "suck it up, Buttercup" kind of thing. When I inject a site and he complains, I will tell my son that it wasn't that bad--not that I have ever injected myself with an infusion set but, get over it kid! When I ask him to lance his finger again to give me more information, I don't think, Dang that's gotta hurt. I just think, its more information for me to keep him healthy.

I am not really so cruel that I don't care about his pain. I have to depersonalize it so that it doesn't overwhelm me. Since that fateful day in March of 2000, I swore to do whatever it took to keep my son alive. His life was a gift and I would work hard to protect it. Poking and prodding him at all hours of the day seemed to be a far better option than what I had seen on March 17th. There was no going back if I could help it.

One of the first Canadian pilots with Type 1 diabetes

With all of this swirling through my head, I began to further think of the people who will say that their children are their heroes. Not just the children living with diabetes, but also the siblings that support them. I have been slowly working on a new look for my website. I am changing pages, making things fresh and looking at adding new sections. Years ago I created a campaign called "Faces of Diabetes". It was printed and bound and then presented to politicians to show them the real "faces of diabetes". These were everyday people and their stories. Some made me cry and some gave me hope but the common theme was that they were all working hard to make the most of their lives with diabetes.

Cameron has lived with diabetes for most of her life

I then began to think that maybe the Faces of Diabetes should also have a new section--Diabetes Heroes. I decided to see if this had already been done. A quick Google search led me to an AccuChek site that showcased Oskar Minkowski and Elliot Joslin. This was not what I was looking for. They were dead and I was looking for real people who have been heroes in their own right. I was looking for the sister who has raised money for diabetes awareness because her younger sister lives with the disease. The little boy who bravely injects himself with insulin so that Mom and Dad can go out on a date night. To me, those are the heroes to be recognized.

So here is my challenge to you...send me those stories (and ask your friends to do the same)! Provide a picture, when they were diagnosed and of course why you think that they are heroes. I will then provide the page to showcase them. If you want to add yourself but don't feel that "hero" works for you, please help me add to the Faces of Diabetes page. Those people are still heroes whether they realize it or not.

You want me to test how many times?!?

2011-09-12T15:57:00.001-02:30

I took my son to the orthodontist first thing this morning. It had been a weekend of amazing diabetes readings and all was good with the world.

As we were returning to his school, I asked him if he knew what class he was supposed to be in at the moment. He didn't but he did remember that he had sports during lunch. Since he has only had his class schedule for a few days I was not surprised that he didn't know where he was supposed to be. Since there would be sports though, I reminded him that he needed to test before and after the activity.

We did a quick recap of some of his classes and I noted that his gym classes occurred first period basically once a week. I then reminded him that he needed to test before and after gym class as well.

He looked at me with both shock and disgust. "You expect me to do nothing but test all day? How much do I really need to test?"

I wanted to laugh or slap some common sense into him but instead I just shook my head. "You test two hours after your meals, before you eat and before and after strenuous activity."

"Yeah but now you want me to test an extra few hundred times."

"Nope. We just said that gym is first thing in the morning. You have to test before gym which also happens to be about two hours after you have eaten your breakfast. No extra test required. You have to test after gym. One spare test per week. As for lunchtime activities, you test before you eat...probably before the activity. You test after the activity...again ONE extra test."

He grumbled and agreed but I knew that he still felt he was being abused. He was being asked to lance himself unnecessarily and interfere with his school day. Sorry, but that is what keeps him safe and allows me information to keep him healthy. More joys of teens, diabetes and trying to have a normal life!

Bang!

2011-09-11T20:43:00.000-02:30

School is back in full swing and Diabetes continues to annoy. The other night, as I was getting ready to head to bed, I thought back over the past few months. June was a low month. I could do nothing to get any control or a break from treating and dealing with lows. July was in range. I received some respite and a chance to breathe for a minute. August was high. There was no controlling the beast. No matter what we did, Diabetes messed with us through failed sites and just being Diabetes.

Obviously I was not thinking well that night because I figured that based on this pattern I should see good readings in September and then lows in October. Where was the logic there? I seemed to have been a bit delusional in my hopes of enjoying a Diabetes reprieve. Reality was that night, my son had his first stubborn low...well since June! Can we say that I was sooooo not prepared?

I was exhausted. I was a mess. I woke up at 3 and was up for an hour trying to get him into a "mom can now sleep" range. The next morning was school so there was no extra rest. We also had appointments to deal with so I really was going to get no break.

The result? Bang! I was a wreck. I managed to string words together. I managed emails to the schools that my children attend to address issues that have already arisen. I refused to get too involved in any of these problems and prayed no one replied to me for a day. I was feeling testy and defensive. I didn't want to mess with anything. By 6pm I could gladly have gone to bed. I stayed up. We watched TV and went for our evening walk. I was dying.

It was finally bedtime. I had changed my son's rates and prayed for a better night. He was high. I love this Diabetes roller coaster...NOT!

Back to School is changing

2011-09-07T09:36:00.000-02:30

Today is the first day back to school for my boys. One is starting his last year of school and my youngest is entering grade 9. Where did the time go? It seems like just yesterday I was sending my oldest to preschool and now I am looking into university costs.

There are some good things about time moving forward though. This year I do not have the stress that I had last year. I spent the end of last year getting my oldest son's classes in order. This fall my son with diabetes is a year older, has most of the same teachers and the same principal. The school now has two children with diabetes and hopefully much more awareness than they did one year ago.

I will still be in touch with the school. I will offer a refresher course for those who heard me last year and education for those who might be new. My son has his phone and alarms put back on his pump. I will hope that a new year will mean a new adherence to those alarms and more information for Mom (but I am not holding my breath!)

Its not just in our own world that we are seeing changes. I used to dread this time of the year because of the many phone calls and emails that I would receive. Families were struggling to get the support that they required for their children with diabetes in schools. Mothers would call me in tears, frustrated by the lack of support. Today there are many more boards who have policies regarding the care of children with diabetes in their schools. There are more provinces that are looking out for our children. There are more parents standing up and asking for schools to "get it" and more schools are!

Each year I speak about sending your children to school with diabetes. Each year I prepare educators and parents. As time as gone on, I am pleased to see that things are changing. Parents are sending their children back to school with comprehensive diabetes care plans and the knowledge that they will be adhered to. Educators are offering aids and assistance where they can. The transitions are smoother than they once were.

This has been a long road. We still have many miles to travel to protect all children with diabetes in schools. As someone who has been on this road for ten years now, believe me when I say that we have come a long way. We have made changes and together, we will work to make many more.

Diabetes Goes Camping

2011-09-06T16:41:00.000-02:30

For the Labour Day long weekend, we decided to pack up the new travel trailer and try our hand at camping. Larry has sold the cabin and decided to see if he liked camping. This was our first trip out so I knew that there would be glitches. Getting used to dry camping, making sure we had enough dishes, and remembering everyone's toothbrushes were just a few of the challenges we faced.

We knew that Diabetes would be coming along so my son packed a number of supplies that he knew that he could keep in the trailer. He also packed the supplies that he would need for the two nights we would be gone.

We had insulin, test strips, two infusion sites, batteries, meters, glucose tablets, and more. We were pretty well set.

In keeping with the summer, Diabetes made its presence known quickly. Our first evening was quiet. We drove forever to find a spot and then fought the mosquitoes for the right to stay there. We eventually won and settle in to enjoy our first night in our "home away from home".

After a movie and a game of cards, we hit the hay. Two hours later I awoke to my son getting up. This was not good. He had changed his site before bed and my gut said it was bad already. He tested. He was high. He swore that the site was working. I didn't think so and gave him a correction via syringe. He went back to bed only to get up again. He was still high but coming down slightly because of the injection. I made him change the site.

We now were down to one infusion set. Why didn't I pack four?? One a day might not be enough. Why didn't I think of this? I had spare insulin and tape to hold a site in place but that only worked with a good site.

Because he was still high, I had him correct again. I then became paranoid. Yes he would be insulin resistant because he was high but what if I over corrected? What if I killed him in an effort to save him? Did I get too aggressive? I went to bed with fears running rampant through my mind...remember that I am the worrier!

Two hours later I got up again and checked on him. He was not on death's door. He had not gone low. He had not even come into range yet but he was headed there. The site was working. Back to sleep I went for an hour or so.

The next day was filled with exploring and enjoying company. We had a family barbecue and the evening ended with full bellies and another movie. I held my breath as I waited for what Diabetes would bring this night. Would he be high again?

No, he was a little low. I fed him glucose tablets but we did not have a straw. He had requested that if I treated a low with tablets that I at least make him drink water afterwards to get rid of the taste in his teeth and braces. We have called this his "glucose hangover" and much like a regular hangover, he is not fussy about the experience. Unfortunately with no straw, I could not get him to drink without waking him. Sleep won over and I apologized in the morning.

All in all we were relatively well prepared for our first camping experience. The boys seemed to have fun. We have a new list of things to add to the trailer and will work on the pack up and returning home routine. I am hoping however, that Diabetes learns to be a bit more behaved on outings if it must continue to come along.

Fourteen

2011-09-05T13:41:00.000-02:30

Fourteen. FOURTEEN. Where did the time go? Fourteen years ago I was wondering when my child would arrive. He was taking his time...a forecast of a personality yet to emerge. Things were done on his own time and birthing was no different. Like his personality however, when he decided it was time, it was done. No dilly dallying for him. The evening of September 5, 1997 he arrived to greet the world and change our lives forever.

As I said, he has lived the past 14 years on his time. He learns at his pace and when he decides to implement something, it happens. When he decided to test, it was done...okay Mom got him to do it by saying she was really busy and could he please help by testing but he continued on his own after that.
When it was time to do his own infusion site changes, he waited until the last moment and then has never looked back. When it came time to taking charge of his own care...well he still stumbles but he still continues to make major leaps when I am at the end of my rope.
Today my baby boy turns fourteen. He is becoming a young man. He will soon be taller than both of his parents and is giving his older brother a run for his money in the height department as well. His voice is changing. His body has developed. Girls quietly catch his eye more than they once did. Puberty has given us a run for our money where diabetes is concerned but we have managed so far with minimal bruising.

I don't know where the time has gone. We have come so far...he has come so far. He is a wonderful young man. I have been blessed with terrific sons. Today we will celebrate with gifts, and CAKE!! Gone are the days of angel food cake and whipped cream. He has lived more birthdays with diabetes than without (12 to 2). Diabetes has never defined him. To him its a burden that he quietly bears but rarely allows it to get in the way of living his life.

We will have a black forest cake with all of that chocolate, cherries and cream as per his request. The carb counts will be off but we will celebrate another year of living! Diabetes will take a back seat. I will quietly look back on how much my baby has grown. I will remember how much his body has been through and be amazed at how well we have done. I swore to hand him a healthy body when he came of age and so far I am doing my darnedest to do just that.

Happy birthday 14 year old!!!

Educating while Vacationing

2011-09-02T09:48:00.001-02:30

Our trip to the US had an unexpected twist...educating at almost every stop. As I have mentioned, Diabetes kicked our butt on many days. Between carb counting errors, long days driving, and site failures, highs were around more than they were gone. This meant having to explain to people why my son was heading asking to use their washroom before he said hello and why he was drinking a gallon of water while trying to say hello.

Larry would explain to people that my son had Type 1 diabetes and was running high. They would then ask if he was adhering to his diet and assumed at his age he wasn't. We would patiently explain that he did not have the strict diet that perhaps someone with Type 2 might have. He eats in a very healthy manner but is allowed and enjoys certain treats now and then. We would expand on the fact that as long as he matched insulin to what he ate, he was unrestricted in what went into his mouth.

Getting them to understand that the highs were not "his fault" and he was not a "bad diabetic" was a challenge. I quickly realized how society has been groomed to "blame the victim" especially in the case of diabetes. They see it as a disease where the patient is the problem. "If they didn't eat this then they would not be sick." "If they exercised more then they would not be in this state."

It was rather disturbing but I hope that we did a good job educating the people that we did come in contact with. I hope that they will stop before they blame the victim and realize that in many cases there is no blame. Most of my son's serious highs were because of failures in the tools we were using. In our case, sites that kinked two minutes after they were inserted. This could not have been avoided...well it was when we quit using stomach sites but we could not know that at the time.

We also, thankfully, came across people that knew exactly what we were dealing with. They grasped the challenges despite not living with the disease first hand and were very understanding.

I once looked upon every interaction as a teaching tool. I have been very open about my son's disease and work hard at dispelling myths. My son, as I have said, is very private. He does not like people to know about this disease and shys away from questions. This trip, I did not want to educated. I was frustrated that Diabetes would not give us a small break. I did not want to deal with educating the misinformed but that is not the way life goes. Hopefully we gave people something to think about and a little more information than they had before we stumbled across their paths.

Diabetes Art Day

2011-09-01T10:08:00.000-02:30

Today is Diabetes Art Day. I was going to come up with something amazingly creative. I would use the many test strips and dead infusion sites that find their way into every nook and cranny of the house. I would use color and tap into artistic genius that I never knew that I had. It would be incredible! After I woke up from this lovely fantasy, I remembered that my son had been that creative!

So this is his "Diabetes Art Day" submission...

The Water park

2011-08-31T11:06:00.000-02:30

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 but...my 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!

Diabetes Crashes our Vacation

2011-08-30T10:17:00.000-02:30

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?
"Yes"
You have a new site and new insulin?
"Yes"
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.

The time for a cure is NOW

2011-08-27T17:03:00.000-02:30

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.

A matter of perspective

2011-08-11T08:33:00.000-02:30

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?

Simple...my 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.