I recently was given the opportunity to read a post from D-Blog Mom on dealing with Halloween treats and diabetes. It was great and brought back memories for me.
My son is no longer doing the trick or treating thing. This is actually his first year of "retirement". He has decided that since he no longer knows the neighbourhood, its time to hang up his treat bag.
I remember back when Halloween was a time of fear. We were on injections by the time my son started trick or treating and it was horrible. We had to eat first before he could go out or bring him a meal with us (in our old neighbourhood, younger kids tended to go out early and therefore were home safe and sound before it got dark). There was a lot of testing and him drooling over the candy unless he was low. Back in those days, I had to convince my children to go to more than a handful of houses. They were never really into candy and were bored quickly.
As my son reached school age, I dreaded Halloween parties, but as D-Mom suggested, I used to go to all of the parties. I wasn't the only parent there. It was a bit of an event at my children's schools and many parents arrived in costume. In our case, all treats were kept off to the side to be eaten later. Cupcakes were only eaten if it was snack time or kept for lunch.
Oh I am glad those days are behind us. When my son went on an insulin pump, things became a bit easier. He could eat his Halloween treats from school when he wanted (within reason) and we went door to door when we wanted to. At that point, I began to enjoy Halloween a little more. He could be like a normal kid and eat treats on the run. Lows were not a worry because we had a pillow case full of treats! Yes, as my children aged I no longer dragged them to one more house but wondered if they were ever coming home! We used cell phones and checked readings on a regular basis. The downside was all of that walking and activity meant that I sat up most of the night waiting for him to crash. It would happen but he enjoyed so it was worth it. Yes I know I could have adjusted basal rates, and over time I did but things would usually still happen...the price for fun when living with diabetes and not always being the perfect pancreas.
This year my son has spent his time getting ready to scare little kids both at school and at home. He has stayed after school to create the perfect haunted classroom for the younger students in school today. He decorated the house with spiders, skulls and other ghoulish items. He had me run out of purchase a bleeding mask to complete the effect. He is a little depressed to think that he will not bring home a pillow case filled with treats on the 31st but I have no doubt he will have enough stuff anyways. There is also always that chance that he will be convinced to go out one last time when Halloween actually arrives. The irony of his desire to fill a pillow case is that after all of these years, he still does not eat a quarter of what he collects! Treats have always been split with the family. Our waist lines say that no treats this year would be a good thing...our minds hope we have some left over treats on Monday :) Have a safe and happy Halloween everyone!
Yesterday I heard of another child who died because of Type 1 diabetes. She was thirteen years old--the age of my own son. She had Type 1 diabetes--like my son. She had parents who loved her and who were diligent in her diabetes care but she died anyway. That is every parent's greatest fear. She had hopes and dreams. She wanted to die an old woman with a book on her chest...sadly she died before she became old or had any experience as a woman. It is truly heartbreaking.
This is not the first death from diabetes that we have heard of in just this past year. This is not the first time that I have heard of someone so young being taken by this disease. This death led me down a path of contemplation. Why were so many people dying? Was this something new? Did we lose children to this disease before? Had we traded rapid insulin and better technology for a higher chance of death?
Those of us who live with the unwanted houseguest called "Diabetes", know that with tight control which promises prolonged health is the risk of severe hypoglycemia and death. Its a risk most of us take with some caution. We try to keep the A1c down. We work to maintain "normal" blood glucose readings at the risk of becoming hypoglycemic unaware. Its a scary balance. Night is our enemy as we fear, as these parents did, of waking up to our children "Dead in Bed".
I put the question out to many parents yesterday--was diabetes more deadly now because of the advances we have or do we hear about death more because of social networking and our reliance on the internet?
The answers were mixed. Many had a new fear of this age of puberty (the last number of deaths were young teens). Were teens more suseptible because of insulin needs that changed on a daily basis with incredible swings? Did adolescence and its rebellion breed a greater risk of deadly behaviors in children with diabetes?
Others felt that technology was a good thing. We were not seeing as many complications as we once did but they noted that try as we might, we are just not pancreases. We could not do enough to mimick Mother Nature. We were not God and could not anticipate all of the body's needs. Despite our best efforts, some form of complications or worse were likely to happen at one point. That was terrifying.
We have children and we realize a need to protect them. Many are devistated by the diabetes diagnosis because they feel that they have failed to protect their child/children. After diagnosis, the need to protect becomes even stronger because we failed the first time around. Now it becomes our job to keep their bodies healthy and strong. We fight to make sure that they have a normal life--as normal as it is to live with syringes, pumps, glucometers, and glucose tablets with you 24/7. To read of a death just shows us that our best just may not be enough.
Yes, I realize that my choice of pronouns has changed from someone else to me. I have always felt it was my job to protect my children and yet my son almost died because of diabetes and misdiagnosis. It is now my job to turn him over a healthy body when he leaves my care. Its a difficult job especially since he is at an age when he is looking for his own independence. I, like many before me, face the challenge of trying to teach him to care for himself and to be there to pick him up and dust him off when he makes mistakes. Death however makes us want to hold them close forever and never sleep again. We want to be in their lives 24/7 and keep them safe.
So to get back to my original question--has diabetes become more deadly? Probably not but it is still no less scary and no less deadly. Diabetes DOES kill despite those who think otherwise. The fear is real and, while possibly magnified by the internet, the danger is still present. The answer? We need a cure. Its sadly that simple. Until there is a cure, we will continue to hover and pray. We will lean on each other in a way not available to generations before. We will learn from each other and move forward but we will never forget those that we have lost....
For Eilish, for Paul, and for too many others.
In the month of November, http://www.diabetesadvocacy.com/ is planning on creating a memorial to those we have lost. We will place names and/or photos of those who fought diabetes but are no longer with us. If you know someone who has lost their battle with diabetes, please email their name and/or a picture to us at advocacy@diabetesadvocacy.com and let people know how deadly diabetes really is. Thank you.
I woke up unusually refreshed and knowing that it was time to test. I glanced at the clock at saw that it was 2am as I headed out across the hall. I was shocked when I saw that in the next room was a young man sitting up in his bed.
"What are you doing awake?"
No response. He was staring at the blinking blue light on the floor coming from his video game system.
"What are you watching?"
Again, no response.
Okay, what the heck is going on here? I grabbed the meter from his dresser and prepared for the worst.
He finally mumbled something unintelligible and laid down.
I tried to breathe. I grabbed his hand and felt that it was cold and damp. That could not be good. As I lanced his finger, the blood was slow to come out. In our world that is a sure sign that he is low. When he is high the blood pours out like water but when he's low it seems more thick and hard to test.
I waited those five seconds for the reading. (Have I mentioned how much I love the improved technology over the past ten years?) He was low. Off to get the juice. The straw touched his lips and he began to drink. Thank heavens for small miracles.
I headed off to read for 15 minutes or so while waiting to see if he would go up. He did but not enough for me to feel comfortable. A little more sugar before my sleep.
The next morning he remembered nothing. To him it was funny...and in an odd way it was. He was like something from a Halloween horror movie and in any other context it might have been amusing. Since we were dealing with diabetes and a low though I didn't find it quite as amusing.
My brain is ready to explode after too long of drawing a complete blank. Years ago my son and I were asked to participate in a report on diabetes care here in Canada. It was called "The Serious Face of Diabetes in Canada" and was prepared by the Canadian Diabetes Association. At that time we had a photographer come out and she took pictures in the summer. We took pictures everywhere but there were no smiles allowed. This was serious business. Some of the pictures turned out great and they took the one they liked along with our story to use in the report.
Fast forward to this summer and they called to ask to do a follow up. I was in the middle of moving but felt it was important for us to be a part of this so I said yes, we would be involved again. The follow up story was done. It wasn't perfect but I was too stressed with other things to be picky (I am sure the author was very grateful for that!). Because of their scheduling, pictures were not arranged until a few weeks ago. At that point I was sent a release form and asked to come up with a photo that defined my child. It could be him in sports, with his pump, in his favorite shirt--anything that defined him.
Being me, I missed reading the part that said, "a picture that defines your son". I was ready for the photographer to chose a site, take some pictures, and life would go on. Wrong. He called, I put him off for a bit because my brain was still not working well on that task. He is supposed to call back this week and set up a time and place. I am still at a loss.
My son is not a swimmer, hockey player, race car driver, piano player or Indian chief. He is 13. He plays sports in school. He is bilingual. He takes his frustrations out on his new kickboxing bag. He lifts his dumb bells while playing XBox and texting his friends. In other words, he is a typical thirteen year old.
My son is not defined by his diabetes. His diabetes is just part of him. Testing is a necessary evil that he avoids. His pump is his best friend but their relationship is a quiet one. Its always with him, close by his side but he tends to keep it tucked out of sight. He will point out another person with diabetes in a room but will not engage them in a conversation. Diabetes isn't who he is, its just something that he lives with.
I think that is a healthy thing but it really doesn't help me with this photo session. Maybe we should just get pictures of him, with his dog on his lap, texting me...its not like that doesn't happen a lot in our life. Wish us luck! When asked for his input, my son's response was "Idk". Yep, him and his cell phone may well be the picture of choice!
I am tired. I am done. I would like Diabetes to kindly pack its bags and take the first space shuttle to Pluto. It can start walking now and meet it when the shuttle is leaving. I had suggested it could go to Mars, but my friend Pam suggested that a non-planet such as Pluto would be much more fitting. Who was I to argue?
I am just a tired Mom of a joyous teen with diabetes. Don't get me wrong, my kid could be way worse. He has an attitude twenty times his size when he is high but we will keep him for most of the rest of the time.
Yesterday was day one of the new regime...Mom texting and son texting readings back. It was a partial success. First reading came in without prompting. I was shocked, amazed and impressed. Lunch time arrived and no word. I texted, and I texted, and I texted. Finally after school I got a reply! I was not happy. On the upside, he had remembered to do all of his tests. I said I was happy with that. I had data to work with.
He came home high but after some activity and insulin, he was back to his human self. We were looking forward to a positive day two. I told him that if he sent me the readings, which I would still verify when he got home, then I would not text him. He thought that was great and a new deal with struck.
It was soon time for me to head to bed so I checked on my child--readings were good and he was soon to fall asleep himself. I had been reading and was about to take my book to bed with me when I changed my mind and put it on the kitchen table. The sane part of me said that I would probably read a bit with my tea in the morning. The skeptical part of me said "Well, if he is low during the night I won't have to hunt around for my book while I am waiting for him to come up!" I quickly brushed away the skeptic's comments and crawled into my cozy bed.
I had just fallen asleep it seemed when Mother Nature called. How could I need to use the washroom already? It was only 1am. Should I do a test? I would probably wake at around 3 or 4 anyway. I was up though so perhaps it was best to go ahead and test while I was at it. Extra data is always a good thing and with that I headed in to do my Mom job.
I looked at the meter after the reading registered and shook my head. What the heck? I know that everything happens for a reason but...what the heck? He was low. How did that happen? Did I really know it was going to happen and that's why my book was ready for me? How does my body always seem to know when to wake up? When will my son's body do this for us?
So many questions....and so much time to ponder and come up with more. It took me over an hour to get him in a range that allowed me to sleep. On the upside, I got a lot of my book read. On the downside, I tossed and turned for another hour or two before I could fall asleep. I was exhausted when I got up to get my son off to school. I wanted nothing more than sleep. Real, honest to goodness sleep. Was that too much to ask for? Diabetes hadn't gone to Pluto but it had gone to school with my child so maybe it was possible? Nope. After less than an hour, despite my fiance telling me I really should just stay in bed and sleep, I was up with a great desire to sleep but no ability.
Imagine how patient that made me for day 2 of the new regime? The first reading arrived. He was high again. Crap! I waited for the next reading, and I waited. I texted him to remind him. Nothing. I texted him and told him to test period. Nothing. Finally I got a reply. "I forgot to test. I will test before and after gym though." He is supposed to test before and after gym! Ugh! When he got home there was no yelling. I was frustrated and tired. What the heck were we going to do? He swore he would do better and hey, he did remember to test before gym. Okay, I gave him that.
It will soon be bedtime for me again. I am truly hoping I can get some sleep. Basal rates are changed. Carb to insulin ratios have been altered. I need sleep. There is only so much foundation that one can put under their eyes without looking like they are practicing putting on their Halloween make up! It would really be so much easier if Diabetes would kindly move to Pluto.
Happy Thanksgiving to all of our Canadian readers!!
Its been a bit since I sat down and thought of all of the great things that I am thankful for from the diabetes world but I guess today is the perfect time to do just that! So without further ado and in no particular order, I am thankful for.....
1. Insulin and Sir Frederick Banting...without which my son would not be here with us today!
2. The incredible diabetes team that has helped us grow to this point.
3. My new support team at home whose strength and willingness to learn and understand makes life that much easier for me.
4. The amazing friends that I have made because of this horrible disease. They have been with us through the good and the bad with wisdom, a shoulder, or a kick when needed.
5. The technologies available to us to keep my son as healthy as possible.
6. living in a province that helps me to be able to afford at least some of these great new advances in technology.
7. a son that for the most part is pretty compliant and is slowly beginning to understand his body and the importance of keeping it healthy...even if he does try to ignore it now and then.
8. family who watch out for my child with diabetes and are there for both of us when we need them.
9. insurance that allows us to pay for test strips and insulin without having to worry about using the grocery money for him to survive.
10. the ability to share our story and our frustrations with so many people who are struggling down the same river we are, knowing that somehow we will all reach the shore in one piece.
Have a wonderful Thanksgiving everyone! May your bg levels remain stable, may you enjoy a day with loved ones, and may your meals be feasts to remember!
Anger. Frustration. Fear. Terror. Sadness. Tears. Overwhelmed. Frustrated.
Yes, that was frustrated twice. As a parent, there is nothing worse than when a child lies to you. I know we have all done it. As a child, you seem to have to try to see what you can get away with. You want to make your parents happy so why show them some of the ugly reality? Besides, they tend to get mad and you get in trouble.
As a parent, its a knife in the heart. Its that perfect little person that you held in your arms those first few months and promised you would protect at all costs. That perfect little child grows and will tell you what they think you want to hear and the hurt when you find out its not true cuts you to the core.
Its not like my son is my first teen. I have a 16 year old. He has lied to me. He has gotten in trouble for doing things that I felt were inappropriate and even illegal. He has never seriously hurt himself and continues to get good grades. I remain thankful for that but each slight hurts just as much as the first.
Add diabetes to the mixture and these teen years...well I am working to fight back the tears because the consequences of drug abuse, alcohol abuse, unsafe sex, and non-compliant diabetes care are all the same. Its having that last item thrown into the mix that just makes matters that much worse.
Last night I went to check on my son. I was more than a little concerned about his overnight readings because he has recently decided that he wants to be fit. His body has become his temple and he is feeding it good food and exercising. Being a supportive parent, I have allowed him to purchase some gym equipment and remind him to test before, after and even during a workout. He has been doing that. Last night I was tired and went to bed before him.
"What is your reading?"
"Okay, you are going to have a snack and test before you go to bed right?"
"Call me if you have any problems."
At 2:30am, I had to get up. I tested. He was low. I cursed and headed to the fridge for some juice. I came back, he drank and then I went to check his meter to see what his last reading was. That was when my world began to fall apart once again.
At midnight, the last test before mine, he was 3.1 (55). Fifteen minutes before that he was 3.5(around 60ish). He was dropping and he went to sleep!!! He did not call me for help. He just went to sleep risking not waking up again. I was shaking and wanted to cry! I literally thanked God that he was still alive and hadn't seized or worse. What was he thinking???
If this was going on, what else was going on? I sat on his bed and began to look back through his meter. I was livid. I was in shock. I wanted to scream but it was now 3am and people wanted to sleep. For weeks, he had been lying to me about his readings at school. He put in numbers that were in range so I would not make any changes. He knew that that could be a problem. They were never perfect. They just looked okay but they were ALL fake. My heart was broken. My baby was lying to me. He said he wanted to be fit and look after his body but he was working to kill it.
I was beside myself. I wanted to pull him out of bed right there and then. That would do me no good. After he was in range, I went back to bed and tossed and turned. What the heck was I to do? How do I get through to a teen who thinks he is immortal? We have all been there. How do I teach him? How do I not scream at him in my frustrations? He is a good kid. He is breaking my heart.
I am going to try the health angle. I have taken away his new prize possession for a week--his dumbbells. Its the only thing at the moment that he seems to care about. I thought about his phone but that will be the next stage. I will now be texting him at school every day. Its allowed and it will be done. I will be asking for readings at set times. I will be checking his meter EVERY night. He will learn that to be healthy and buff on the outside, he needs a healthy body on the inside as well. I have to try and do this without freaking out. That is going to be so hard because watching your child potentially hurt him/herself is so devastating.
I told my fiance about this at breakfast. He knew I had been up with my son last night because he was low but didn't know the rest of the story at that point. As we discussed it, we both decided that part of the problem most likely is not wanting to test in front of his new peers. I am sorry but that is life. That is the life of a person with diabetes and not wanting to is not going to change things. There are things in my life I do not like to do but it has to happen. And I wonder why I have stress and anxiety in my life? I don't know that it will ever end with diabetes in the picture...and children.
I guess its back to tightening the reigns, being more diligent, kicking his butt and being the terrible mom. It feels like grounding him...you know Mom is punished as much as he is but time for mom to suck it up as well. This is serious and needs to be nipped in the bud NOW!
Wish me luck...I am in for an extra long and painful long weekend with a grouchy teen and a rough week to come!
Doug Burns, Former Mr. Universe and PWD
October is Breast Cancer Awareness month. Everyone knows about breast cancer. If you are a woman like me, you fear it. Everyone knows pink. Everyone knows about losing a breast, chemotherapy and all of the other nasty things that come along with that horrible word--cancer.
November is Diabetes Awareness month. Very few know about diabetes. Most people think it happens to someone else. They don't think its serious. They are not sure if the awareness color is blue or grey...and aren't really that concerned. They know about blindness and amputation but that is not a given so its really not that big of a deal.
Its the ignorance of the disease that is frustrating. The "its no big deal." and "You worry too much." comments that kill you. I recently had a teacher ask me if we could arrange my child's highs and lows around an exam schedule. She was well meaning and very sincere. She thought that perhaps with warning of when a test was coming, that we could make sure that my son did not go high or low during that time. She was told by myself and one of her colleagues that it didn't work that way.
It is hard to make people "see" what those of us who live with diabetes in our lives 24/7 "see" each day. They don't understand why we test during the night and deprive ourselves of much needed rest. They haven't had a friend not wake up from diabetes. They don't understand how quickly a low comes on even after you have recently tested. They haven't seen a child pass out in the middle of a playground because they went low and didn't know how to tell you. They don't understand why we are so fearful of ketones. They haven't seen the how quickly they attack our loved ones leaving them weak, frail, and clinging to life and how long it takes to get rid of them.
To most people, diabetes is that disease where you can't have sugar (I mean its called "the sugar" isn't it?). Its that disease that Grandma had but she liked to sneak cookies so its no wonder she went blind. Its not like cancer or a serious disease. No one dies from diabetes. Parents who test, hover, and want you learn about that thing called Glucagon are just those overprotective people who need to learn how to let their kids just be kids.
I don't know how to get the majority to understand. As someone recently said, diabetes is not sexy. It is not a disease about pretty pink ribbons and cleavage. Its a disease that is grey and about blood. There is nothing attractive about diabetes. You can't see a pancreas. Don't get me wrong. I am very attached to my breasts and would love a day when we don't have to worry about breast cancer but after years of being my son's pancreas? Well, it may not be a sexy organ and it may not have any appeal to the general public but I guarantee it has my utmost respect and I would not want to lose it either.
So what is the answer? How do get more people to understand? We keep going as we are and then some. We advocate. We educate. We communicate. We teach those who want to learn. We tolerate some ignorance and try to help them to understand what this disease is really about. Its a long road. Its frustrating at times but with each person who learns the reality? Well its another person who wants a cure almost as much as those of us who live with it.
