People always discuss the evils of pizza. When we were on NPH years ago we didn’t have that problem….well until his honeymoon ended and then I began to see issues where previously there had been none. I still thought I had pizza pretty well handled. We used an extended bolus and life seemed good…except when in New York and dealing with their pizza. There just seemed to be no bolusing for it.
Well its been years and now I am having a new “pizza” problem. We use the extended bolus with great success for the first four or more hours. Readings are in range. I am a happy camper. Liam is a happy camper. Life is great! Then we hit the 8 hour or so after pizza mark and things begin to get ugly. Eight hours! Who would think!!! Last night he was 6 (108) four hours after pizza. I thought we had things beat. By 10 pm (we ate the pizza for lunch at around 1pm or so) he was up to 24(432). I couldn’t believe it. It wasn’t the other food that he had eaten because that was pretty normal and I am sure the bolus was accurate. By 1am he was down to 21 (378) but this just seemed crazy. I really hate diabetes. A lovely family lunch turned into a Mom meltdown by 2am. Ah the joys!
Once upon a time in a not so far away place, there was a little boy who was beginning his school career. He looked like any other child of his age. There was one glaring difference however. He was one of approximately one thousand very special children that lived in this land. They were children living with Type 1 diabetes.
This young man was blessed to be beginning his academic career in a loving school in this place not so far away. He went to an enchanted school that made sure he was safe. They kept in contact with his mother and ensured that all of his care was diligently looked after. He truly was a part of their magical family. This became more evident one spring six long years ago.
The staff began organizing year end activities. One of the incredible wizards of learning at this enchanted school went to the child’s mother and asked if the school would be able to do its own walk for diabetes. The money would go to charity and the children would get to know how they were helping one of their own special friends. Tears came to the mother’s eyes as she said of course this could be done.
Six years had passed and the enchanted school filled with wizards and amazing children continued to raise money for people living with diabetes. Each year the event grew. Each year more and more money was raised. The enthusiasm for this event never wavered. As the years passed the magical place of learning which housed less than 55 students from kindergarten to grade eight amassed a total of close to $18,000 for diabetes charities. What a truly magical place that could foster such a loving and caring environment. What an incredible place not so far away that could raise such large amounts of money in an economy that was in the grips of the evil Recession. If only such a place could exist! What a role model it would be!
But that enchanted school in a place not so faraway does exist and their story is real! Ecole Notre Dame du Cap is a French language school in the town of Cape St. George in the province of Newfoundland and Labrador. On June 15, 2009 it raised $2217.20 for the Diabetes Hope Foundation. This foundation, with the help of these incredible young people, does what the provincial government has not yet been able to do–they provide assistance for young adults to purchase diabetes supplies that cannot afford to do so on their own.
These incredible students consistently raise money to help their friend and those living with diabetes in this province. They enjoy a day made extra special by pizzas provided by the school’s Parent Committee, prizes provided by a variety of sponsors, and the sunshine Mother Nature never seems to let them be without on their special day.
As the mother of that very special child whose life was nearly taken by Type 1 diabetes over nine years ago, I continue to be amazed at the generosity of the children, the staff, and the community. They reduce me to tears each year to know and see how much they care for my child and others living with this silent killer. Thank you again to the students. Thank you to the staff. Thank you to the sponsors who allow me to give a small token of thanks back to each student. And thank you to the community of Bay St. George who continue to support our children as they raise money for this event each year.
I am definitely heading for one of those weeks! Friday Liam was sick…terribly sick and it was very scary as I said. By Saturday he was fine but on Sunday evening he threw up again. As the vomiting ended we ran into a new and exciting problem…chronic lows! Every night he has been going down into the 2s (36s) and nothing will bring him up. I have turned his pump off more in the past two days than I ever have in his life. I have reduced basal rates. I have used temporary basal rates. My nerves are going quickly with my lack of sleep. I am up until 2 or 3 each morning to get him in range to sleep and then up two or three more times because I know that he will drop. Today Liam was to go to a birthday party. He had to wait until he was in range to leave. He asked when this was going to be sorted? I told him that I was doing everything that I could but I felt like I was failing him.
Tired and failing your child is not a good time for someone to launch a personal attack. The details don’t matter and I understand where the attack came from. I am a big person and can handle the shots aimed at me. I am confident in my position and saw no reason to defend myself or even acknowledge the attack but one part did bother me. The attack went from being about me…which as I said, I can understand, to being about my son. This person does not have a child with a chronic illness. Thankfully their children are very healthy. This person does live with someone with a chronic illness but dealing with an adult is very different from living with a child. Going into something voluntarily is very different from almost losing your child to the disease and spending the rest of your life working to make his life the most normal it can be.
As I said, I am tired and sensitive but this person’s attack I found particularly uncalled for and vicious. It was said that I am “disabling” my child. I am not sure how I am doing this. I do all I can to ensure that diabetes does not stop him. I provide him with all of the tools at my disposal to keep him healthy. With his health care provider, we are working to make him independent and intelligent about his disease. As much as he may frustrate me at times, I do believe, considering his young age, that we are succeeding. He will be healthy and he will be able to live an independent and full life. There will be nothing “disabled” about him.
This person went on to say that I should not be fighting or helping people with diabetes. I guess I should not have worked with others to see insulin pumps for our children. I assume I am to stop trying to get coverage for adults who wish to use insulin pumps as well. It will save this person a large out of pocket expense but it is something that I should be giving up on. I found it most ironic that this person, who said I should “give up fighting the good fight” and get a real job, benefits from the many years of hard work myself and others put in to get the Disability Tax Credit for people living with Type 1 diabetes. If I hadn’t been fighting then how would they be benefiting from the tax savings today?
I know, I have to walk away from this. I have been attacked before and I will be attacked again. I have not responded directly to this person. They will not stop me from doing what I must. I will continue to be involved with diabetes walks. I will continue to assist with scholarships. I will continue to take emails and phone calls at all hours from people needing help or support with their diabetes or diabetes related issues. I will continue to publish a bigger and better website. I will continue to make a difference. I will do this for my son and for so many others.
It all started last night a little after 9pm. Liam had been playing with his friends. He and a friend came in and grabbed a freezie. Liam came and brought me his saying he felt a little ill. That was when it began. He ran for the toilet and promptly vomited enough for 10 people! He had it everywhere. I was washing the floors, the walls and every surface in between.
When he was done, I told him to test and check for ketones. He had been in range but something had to have caused this. He was in range but where was the Precision meter? We tore apart all of our diabetes drawers. I dug in cupboards. We pulled apart junk baskets. Finally I found more than just empty meter cases and Liam was able to test for ketones. They were only trace. That was not our problem. I gave him gravol, his friend went home and Liam headed for the couch.
It didn’t take long before Liam was sound asleep on the couch. I quietly worked and hoped that he would be fine by the time I had to go and pick up his older brother from a teen dance. I heard a noise and looked to see if he was okay. He wasn’t. He was on his back, hands over his mouth and vomiting once again but this time he was keeping it all in his body. I was terrified. I had to force him on his side and hold him there. He kept wanting to roll back and keep in the vomit. It was up his nose and all over himself. I held on to him and let him throw up all over the floor. It was easy to clean but he kept telling me that he could not move. I was more and more scared. Finally the vomiting stopped. I had him sit up. He was very disoriented.
I ran a tub for him and wondered if I would have to bathe him. He was fine by the time it was done. He cleaned the vomit from his body and his hair while I cleaned another room. He decided that the was starving when he was done. I gave him a cracker and more gravol. He went back to sleep on the couch.
When it was time to leave I tried to get Liam to get dressed. He was still pretty out of it. We put a blanket, pillow, bucket, and rags in the back of the car and prepared for our car trip. As I started the car, I could hear the back door open and Liam begin to vomit again. We stayed there and waited for him to be done. I wanted to cry. Was this ever going to end? Liam wanted to stay at home but I could not leave him alone by himself. I was terrified that he would throw up on his back again. I was also going to be awhile and was not leaving him alone.
We made the trip with all of the car windows open. He slept like a log and all seemed okay. We got home and he wanted to eat. I had said if he could make the trip without being sick then I would let him have a cracker. He tested and he was 3 (54). I gave him sugar water instead. I needed something that he wouldn’t throw up and was pure sugar. It didn’t help. He fell asleep but stayed low. I decided to take a chance and try glucose tablets. He ate them but he didn’t go up. I set a temporary reduced basal on his pump. Still no upward movement. I finally suspended his pump. Still nothing. More glucose and finally a cracker. He had to go up eventually…and he did. When he reached 4 (72) I went and laid down for an hour. We were now at well after 3am. I set my alarm and checked him again. He had moved up to 5 (90). Back to bed I went with my alarm set for another 2 hours. Liam was sleeping on the couch. I had made it so he could not sleep on his back.
About an hour later I heard him again. He was in the bathroom throwing up. He finished and came into my room to sleep. I got another gravol for him. I was hoping this would eventually start to work! Liam instantly fell back to sleep. I dozed. With each turn he made I was awake and certain he was throwing up again. He did vomit again at 6am. He had a bucket beside him but little left to vomit. I was exhausted. He slept like a log. His bg level had not gone over 10(180) all night. I could not believe it.
By 11:30am he was awake and looking for food. I gave him some toast and told him to see how that worked. He no longer was that lovely shade of green so I hoped for the best. He said he felt perfect. By 1pm he was ready to go over to his father’s for the night. I called to check on him. He has been perfect all day. I am so glad for him but boy am I ever beat!
Today I am definitely feeling like the bug. Its after midnight and of course I was dying to get to sleep. I set my alarm for early tomorrow morning…Liam’s last day of school. I found a meter and a strip. I grabbed a lancet, waded through all of the junk that Liam had left on the stairs rather than putting away and was off to test. One last check for a few hours. One check and I could sleep! We had been out for pizza to celebrate good grades so Liam would still be high. He was 16 (288) earlier so you know I was going to be able to rest.
Wrong! I took the meter. I filled his finger with blood. The strip refused to suck. What the???? Okay, I cleaned the finger. I got more blood. I tried again. It just barely accepted the blood. I waited for the reading…E5. It was an error reading!! Not enough blood. Oh the lovely four letter words that were on the tip of my tongue as I headed back downstairs. Let me try this again.
New meter. This one had to be better. New strip. Same lancing device. Back up the stairs, this time grumbling and picking up items as I went. I threw the items off to the side for Liam to deal with tomorrow and headed to his bed. Once again, I lance his finger. Once again, I get a large amount of blood. The strip sucks this time. I walk towards the stairs not even thinking about having to correct. Good thing…he was 3.2 (57). More choice words as I shuffle off to get some juice. I fill a glass, find a straw and do those stairs for a third time in less than five minutes. Liam is not keen on drinking. I finally get him to sip. He drinks it all except the last few drops. Those are sucked up into the straw and then fly all over his pillow. He is using my cream pillow cases and I have managed to get strawberry juice on them! I can’t even blame him but I am choked. I clean them as best as I can and now I wait. Why are 15 minutes a lifetime when you are dead tired and simply want this day to end?
Yeah! 5.5 (99) and I am off to bed for two hours. Oh the fun! Oh the joys! Oh where is my DexCom Seven Plus????
There has always been a joke about creating a diabetes boot camp…well actually it is half serious. A camp where kids/adults would be sent and forced to learn about diabetes. They would have to realize how important it was to test and inject. We would show them reality and help them to face it.
Today I began thinking a little more. What about something much more serious and encompassing? What about family camps? I know that family camps exist but what about family camps targeted to families who have trouble dealing with diabetes? Who have children who are in DKA a set number of time? What about a camp for families who just are not getting it?
I know that no such thing exists in my province. I also realize that this would be a very costly venture. There is the camp itself, food, and the cost of experts.
You would need doctors willing to talk on basic care as well as the realities of complications. Someone to discuss therapy options and the importance of testing. You would need a nurse and dietician to discuss diet, exercise, etc. You would also need people to lead discussion groups–ones for parents, for children of different age groups, and for families as a whole.
You would need to organize fun as well. Things that would bring families together and create bonds with new friends. I know that groups have done this in the past. I also realize that money is tight for all organizations currently. I still wonder if this could work. How it would work? Who would you approach?
Any ideas? Please let me know. I think this might be something I want to seriously look into. A camp for…2010?? Hey let’s start dreaming!!
This weekend my son had a friend spend the night. They had such a good time that when the boys went to their father’s the friend joined them. When his mother called for him to come home the young man asked if he could spend the night there. His mother agreed. It was raining and the boys had come in for the night anyway.
Before the young man’s mother hung up she asked if Liam had tested. She heard “I was just about to do that.” She told the boys that she would wait to hear the result. Liam tested and told her he was 10(180). She said, alright then and let them carry on.
Today she told me about this and said “Gee,nothing like a second mother,huh?” I laughed and told her to keep it up. He can never have enough people that care!! Besides, until I get that CGMS I will take all of extra help I can get…and even after!!
Welcome to our new Blog home!!! It was suggested that we make our blog page much more interactive and after some searching, well this seemed the logical answer. We hope this works for everyone and look for many more changes to the Diabetes Advocacy that we hope will help you to feel more at home and provide you with continued information and entertainment as you look into our lives!
Complications. They are one of our many nightmares when living with diabetes. Personally the first one is dead in bed. The idea of a serious low that I may sleep with terrifies me and keeps me searching for just that right CGMS tool…and I may well have found it but that is a post for another day.
The second big fear is the complications caused by highs. We have all heard the big ones. If they run high for too long there can be complications of visions as the small blood vessels are damaged. We see the optometrist every year and have pictures of those vessels taken “just in case”. We know that neuropathy can occur in the feet and we keep them clean, dry and in wonderful condition. We know that males have to be concerned with erectile dysfunction. Yesterday I heard of a completely new one to me…the issue of incontinence and loss of bowel control. At first it was mentioned in regards to elderly patients and their complications from Type2 but quickly the record was set straight. Young girls in there 20s who had taken poor care of their selves during their teen years were now wearing Depends and battling severe depression as they could no longer control their bowels.
I cannot begin to imagine how degrading that would feel at any age but in your twenties?? More to be scared about. Another nightmare. Another worry. Another reason to get that CGMS yesterday rather than today. Another reason for tight control.