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?”
“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 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!
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.
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.
“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!
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
5 squares of semi sweet chocolate
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
“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.”
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.
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!
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!
What was your reading?
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 🙂