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.
Emergency relief. Disasters. They all take place on the news. Hurricanes hit tropical places like Florida, Cuba and other winter getaways. Earthquakes are for California or China. Flooding is for places like India. They all take place on our TVs and never impact us right? Wrong.
Some blame global warming, some say its because we can hear about it on our TVs more often but no matter how you slice it, no matter where you live, you should be prepared for an emergency due to an act of nature. Mother Nature does not care where you live or what you have experienced. If she decides to throw some severe weather at you, you are going to get it and you had better be prepared.
Recently, the area we live in was hit by a hurricane. We were very lucky in that it had been downgraded a lot by the time it reached us. That didn't stop it from destroying roads, cutting off power, phones, and Internet service, isolating many areas, and damaging homes. We were very lucky. Our power stayed on after blinking a few times. Our Internet hung in there after threatening to crash and our house stayed in one piece. We were able to watch debris fly by and gawk at the rivers flowing in what were city streets just a few hours before.
Did I have an emergency kit prepared? Would I have been ready to evacuate our house at a minutes notice? The answer is no. I do keep extra supplies available. We would have had enough test strips, insulin and pump supplies to last us in isolation for a week or two but I would not have been prepared to leave our house. That is something I may have to fix.
Living where I do, and where I have lived previously, I tend to worry more about being stuck in our home and not being able to get out. I have seen power outages, ice storms, and roads blocked by snow or rain washouts. I am great at stockpiling. We usually have water stored. I have a lot of candles around and try to make sure that we have a lighter somewhere--there is something to be said for the days when everyone smoked, there was always a lighter handy!
Its easy to make light of Mother Nature when you have managed to avoid the bulk of her wrath. A friend kindly told me the other day that it was all of the good karma I have accumulated over the years for all of the diabetes work I do that protected us. I don't know if that had anything to do with it but I will take all the good karma I can get and I will rework our diabetes drawer to be more emergency prepared.
Take a look at your region. Are you ready to be evacuated because of flooding or landslides? Could you be hit by an earthquake or socked in by a snow or ice storm? Never take for granted where you live. When a chronic illness is in your house, make sure you are prepared for the worst. If you are unsure what people keep in their diabetes emergency kit, please look at the list we compiled at http://www.diabetesadvocacy.com/emergencysupplies.htm and lets all be safe!
This week I finally got a chance to sit down with my son's teachers, the principal and the lady in charge of special education to talk about diabetes as it pertains to my child. I appreciated the opportunity and once again was a little nervous going in. I reminded myself that I talk to people about this very subject--how to speak with your school about your child's diabetes. Why was I so worried about my prep? Why was I concerned about how I would be received? Because I am human. Because I am a mom. Because I have been educating people for over ten and a half years and still am lucky if I get through to a quarter of them.
I worried, who would show up. Would I hold their attention? Would they be willing to learn? There was a teacher who had a diabetes connection in her family, would she know everything? Would she know anything? Yep, basically I was terribly paranoid.
The school has been wonderful to date. Its another small school and my son seems to have quickly become comfortable there. He is still a quiet child but he is involved in their lunchtime sports and comes home talking about various students in his class and things that they have done. That is definitely a huge weight off of my shoulders. That also made me anxious about going in and making more demands.
It was vital however that they understand how the brain functions (or doesn't function) when high or low. I had to make them understand that he was private and often would not tell people when he was out of whack. I did not want to come across as a demanding parent but these were important concerns. These were things that would impact his academic career.
Things went well. Everyone was very open and willing to learn. One teacher did know about this and that...and she truly did. She even asked if he carried Glucagon. The other teachers asked questions and the principal began to work out a plan on how best to deal with the issues at hand. Teachers were fine with readings being written on exams or writing them when in range if need be. YES! One victory. The next issue was how to make the other children aware of his diabetes. We all agreed that other students are our best protection. They see more, they are with him more, they can help a lot more than most adults in many situations. The next question was how would we handle this? How do we get my son to talk about his disease? According to him, no one in his class knows he has diabetes. This had to change.
The conversation led to another person at the table stating that she wished her daughter would open up more about the learning issues that she faced. As I sat at the table I realized that in that small class, many students were facing some sort of a challenge. It may have been physical as in my son's case or it may be something that challenged how they learn. Everyone has something. Everyone carries some burden. Everyone faces challenges. That became the angle that one teacher decided to take. It was decided that diabetes would be a health topic but discussing your own issue and the battle you face would be a project that all students would do in another class as well.
This should be interesting. My son does not talk about his disease. He probably figures that Mom talks enough for the entire family and then some. At breakfast we discussed how important it was that he talk. He needs to have people around who know that he has diabetes and who can help him in an emergency. In his old school, his friends had grown up with diabetes. In our new area education is just beginning. I hope he opens up a bit at least with a few students. Time will tell I guess.
Can you be too pushy? Too demanding? I know that you can be but where is that line?
I received an email from my son's principal yesterday with a time and date for us to meet regarding his care in school. I was very pleased that time had been taken for a meeting to discuss with them my experiences and concerns. After 24 hours, I began to consider who would be at this meeting. It was to be small, which was fine but then I realized that the people involved were his home room teacher, the principal and a special education teacher. The home room teacher also teaches him two other classes so that was fine but why a special ed teacher? He has no learning disabilities. He has a physical condition that can impair his thinking but we do not need special learning techniques or anything like that.
I then realized that we were missing a few key teachers from core subjects. I emailed the principal back today and asked about at least one other teacher that I felt should be there. I explained that I understood that they had had an in service with a nurse but there were cognitive issues around testing and homework that needed to be discussed. She emailed me back and said that she would invite all of his teachers to attend. I truly appreciated that she did this and I hope most, if not all, will attend but I began to wonder if I was being too pushy.
One teacher is hypoglycemic and another told my son that she also has a child with Type 1. These two people should be a major help but I still worry. How long have they been dealing with this? Do they truly understand all of the implications? Are they looking at me like an overprotective nutcase? Am I an overprotective nutcase?
I don't think so. I think I am an educated person who sadly has had to learn that this is a disease about more than just taking insulin and testing. I have seen the impact of highs and lows on my child's body as well as his mind. I have seen him high and unable to answer basic questions in class. I have seen him low and unable to write at all.
So many people still think of diabetes as "Grandma's disease". Very few people understand the magnitude of how it affects the mind and the body. Many people do not understand how quickly changes can occur. Most people have never had to see the other side of diabetes. They have not seen the unresponsive loved one who has gone so low that they are slipping unconscious. They have not seen the child who cannot see or grasp how to turn on a light. They have not seen a person so weak from ketones that its all they can do to get to the toilet to vomit.
I guess in this case, its my job to make sure that they understand. Its my job to warn them and prepare them. Its not just about protecting my child but its also about making them aware and ready to handle these things when it happens in their classroom. Hopefully if they think I am overprotective today, they will thank me later when they begin to understand and see for themselves what diabetes can look like up close.
Its been ages since we have had any sort of a low. We have been fighting highs and puberty for months. A good day sees numbers that are at least in range but a low? What are those? Funny though, when a low does arrive it always happens at night.
Last night I was sleeping in bed and had no desire to get up. I began to think that one night without testing would not be a bad thing. Maybe this one night I could sleep through and I would get my son to wake up one night to test to give me a break next week. It sounded like a great plan. He had been in range or high most nights. I could take a night off. It would be good for me. I know I was awake but still not having to physically get out of bed? Yeah, that was the ticket. That was what I should do. I was tired. I owed it to me. I should stay in bed and go back to sleep.
After such a long debate, you know that I got out of bed. I was awake. I felt guilty. I felt selfish for wanting to sleep when my child should be tested. I got out of bed. I crossed the hall and tested. I then wanted to cry. He was low. Granted he was not rock bottom, freak me out, this will take days to come up low. He was just a lot lower than I like to see him at night low and needs 20g of carbohydrate low. I fed him his glucose gel because he was semi awake and wanted to try it.
I left his room telling him to sleep and I would be back to test him. I grabbed my book and curled up on the couch hoping not to wake anyone else in the house while I waited. As I walked away I so wanted to cry. I get that feeling often when treating a low at night. Its the desire to cry with relief because of all of the "what ifs" that run through your head. Its the desire to cry for that selfish reason--you are dead tired and just want to be able to sleep without being on guard all of the time. Its the selfish frustration that says, "I have been doing this for over ten years now and I want a break but I can't and he will never have that break until a cure is found. " Its that selfish craving to live a life like others who can sleep and just get up in the morning after complaining that the cat next door kept them up all night rather than their own worrying and nerves about the safety and health of their child kept them up. I know I am not alone. I know that diabetes is not the only disease that leaves parents worrying. All of that adds to making you feel worse.
I crawl back into bed after adding that extra five grams of carbs "just in case" and I want to cry because I have been so selfish. Others have it worse. It could have been worse for me. I only have one child to deal with. I am able to work from home and can sit at my computer screen in my pyjamas for hours before I get my body working if I want. I just end up feeling selfish...and tired. So is life when diabetes lives in your house. Could it please move to its own house with no one in it but itself? I guess not. Time to suck it up and be grateful to see another day with my son.
