Everywhere you turn there is a hype about the latest boy band….the Jonas Brothers. They are exceptionally popular in the diabetes community because one of the boys has Type 1 diabetes and has been very open about it. I understand he wrote a song about it. He has spoken in front of Congress about living with the disease and he is a spokesperson for Bayer glucometers.
This is not the only celebrity to provide a face to diabetes and I am all for as much awareness and publicity as we can get. I recently read an article where this young man in particular states that he has to test his blood 10-12 times per day. Its great to see people discussing the “real” aspects of this disease. Another performer has told audiences about going low when performing and not knowing how to play his instrument or the words to his songs. This is real. This is what diabetes is all about but……you know that there had to be a but.
For me the “but” is but they don’t live in the real world. In some cases they may have grown up in the real world but for this young Jonas, he was pretty famous soon after his diagnosis (or perhaps he was diagnosed after becoming famous I am not sure). Being famous did not and does not mean that he is immune from the hassles of testing, injections, and carb counting but it does mean that one very large burden to care is lifted. There is no barrier to access of devises or supplies. They either have more than enough money to purchase the best care there is or they have companies lining up wanting them to use their products so that they can be used as part of advertising campaigns.
That bothers me. Its wonderful to make people aware of the disease. Its fabulous to get out there and lobby for increased funding for a cure. What happens to those who are living with diabetes now however? What happens to the families struggling to buy test strips? What about the families who cannot afford to pump? What about the families who cannot even dream of being able to afford a CGMS? What about the families struggling to have enough insulin for their loved ones?
I know celebrities cannot do everything but I tend to feel that they don’t live in the real world. They can show what a person living with diabetes can achieve. They can do anything if they work at it and stay healthy. That is a fabulous message but I guess I have spent too much time with people who struggle each day to afford to care for their disease. My concern is with people who have to choose care for one child over the other. I worry about those who choose to let their own diabetes care fall by the wayside so that their children can have better care.
I wish more could be done to bring the real struggles of diabetes to the forefront. I wish people could understand the real cost to families. I wish people could understand the emotional as well as financial toll this disease takes. The stress, the frustrations, the fears…those are the real issues of diabetes as I see them but I don’t get paid nearly as much as the Jonas Brothers or have an eighth of their fan base.
Back to school. I actually don’t like this time of year. I love the fall colors. I love new school clothes. I love new books and finding cool pens. I hate the high costs and the fact that my kids seem to have grown out of absolutely everything they owned in a period of two months. I hate that they need more and more costly supplies each year and the stuff I had from last year is passe. I hate schedules and getting up at a rigid time for school. I hate lunches, snacks and carb counts.
The thing I really hate is sending diabetes back to school. I have been lucky. I have a great school. I have a supportive staff and principal. I have educated them well but this year is different. I have educated new staff members before. I have made it well known that I will tolerate nothing less than the best of care for my child in school. It is what he receives at home and therefore it is a must at school. This year is different however because Liam will be in grade 7. He is older. He is doing more of his own care. He has begun to take charge of his diabetes. He can test on his own, figure out bolus, and decide what to do about highs. He will also be involved in more exams and other activities that will test his independence and his teacher’s knowledge of the disease.
We have an understanding with the principal that if Liam is too high or low, exams that will impact his grades will be rescheduled. I now have to ensure that his new teacher will follow this rule. I have to get him to understand how serious this disease is. I have to teach him to recognize when Liam is “off”. I hate doing this and I am in a supportive environment. It kills me when I hear from parents who don’t have this support.
I have to contact the principal to set up a meeting with him and Liam’s new teacher. We have to go over the rules and information. The school will see more new staff this year so we also have to set up a time for a staff in-service. I have to redo old information sheets that I haven’t had to worry about for 3 years. I have to fill up supply boxes. I don’t want to do it. If I don’t do any of these things will it make time slow down? I guess not. I should do this. I will get to it. I have another two weeks. I will do this. I will.
I have not written a lot this summer. We have been pretty busy with family, friends and enjoying some wonderful times. Just keeping up the website has been enough along with this so the blogging part has dwindled but we will soon be completely back on track.
Today I had to go to see my family doctor. As I was waiting for my turn, I happened to look at a magazine cover. It showed Julia Roberts dressed as a bride for the movie “Steel Magnolia”. In all of these years, I have still never seen the entire movie. Actually I have no great desire to do so either. I know many are big fans of the movie but its just not my type of movie. Despite that, I do remember that the Julia Roberts character had type one diabetes. She had a low during one part of the movie and was very combative when her mother tried to get her to drink some orange juice. As I sat in that office, I began to put myself in their position. I could see life without testing. I could see life with Liam simply trying to guess if he was high or low. I could see complications by the time he was 20. I was so very grateful that if my son had to have this horrible disease he did so now.
We have seen our fair share of changes in technology. When he was first diagnosed the blood sample covered his small finger and we had to wait over 30 seconds for a reading. With a toddler I can tell you that 30 seconds is an eternity especially when you are wondering if they are asleep because of a low or because they were tired and needed a nap.
We started out with ketostix and now will only use Precision blood ketone test strips. In the beginning we only had one meter, now we have a huge collection. We used to test 6 times per day and now that will only get us through half of the day. A continuous glucose monitor was something that you could only get from the hospital and the readings had to be interpreted by the clinics. Now we are impatiently waiting to be able to purchase one that stays attached to him 24/7 and gives real time readings.
Its amazing how things have changed. We still don’t have a cure but we have a lot of wonderful technology that allow us to really monitor how the body reacts. Personally I still have a long ways to go before I would consider myself a great pancreas but with the help of such wonderful tools, I at least know that I am definitely doing the best job that I can.
Going to your first outdoor concert with your children can be pretty interesting to begin with. You have hours of standing on your feet, unpredictable weather, and being herded like cattle to look forward to. You know that you have to pack as much water as you are allowed. You will have to drink that water with care and caution because washrooms will not be easy to get to or return from. You do not want to have to move for food or any other luxuries once you reach that perfect spot to watch your concert acts from.
When you bring diabetes along to an outdoor concert you have a few new worries. What if he is high? How am I going to get extra water? I spent all of this money on a concert and getting here, will peeing mean that I will miss the bulk of the show? What if he is low? Will I have enough glucose? Will they allow me to bring in snacks? It says “food for medical purposes” but will I have to fight to make them understand? How will we reach a meter when we are stuck shoulder to shoulder with no room for any movement? Will the insulin go bad if there is a lot of heat around?
I had these and many more questions going through my head before heading off with my boys to see AC/DC at an outdoor venue. Liam was telling everyone that he was going and Mom was scared to death that there would be problems. There was no fast pass here. There was just going to be us and 70,000+ other people. I had water. I had snacks. I had meters….two in case one went bad somehow. I had syringes. I was ready to fight with security to get my stuff in. I was set!
Security barely looked at me once I told them that I had food for diabetes. Liam had his one space closest to the gate. No one pushed him or crowded him. He was able to test with ease…the rest of us were shoulder to shoulder and shoved like we were no one. He started out a little high so we corrected half of what his pump suggested. I knew that we were not going to be eating until everything was over and that walking to the concert area as well as standing for hours was going to burn off a carbohydrate or two. Mom was right. He was in range most of the night. He was never low. He was tired. He had the experience of a lifetime. He was in a crowd bigger than anything any of us have ever experienced in such a small space. And more important still? He got to see AC/DC and can continue to brag to all of his friends and family!
I was recently given an Accu–Chek Nano meter to try out as well as its software. I am old school. I like to see things written down in front of me. Computers crash. I lose files. I want hard data! I have to admit however that the logging break we have taken this summer and just looking at numbers in time frames on a screen does have a certain appeal.
I have had problems getting into the information at times. The set up process seemed to take years. Once I was in, the graphs were easy to read and adding information was a piece of cake. The downside is that I don’t have that information from the piece of cake he may have eaten. There is room but if I had it written down….well I might as well have used a paper log!
This sent me back to thinking about one of our old One Touch meters. It had everything…carbs, insulin, readings, exercise, the works. It is a bit large but there is a lot of data to be input. I was thinking that perhaps we should look at going back to it. This means that I would have to find the meter, the software, and the cables. The Nano has a nice infrared port. Life is simple.
Another problem for us is that we use a variety of meters. We have a separate program for the pump (which I rarely download and really should do this soon!) . I am thinking that one type of meter and seriously thinking about software could be a good idea for Liam. The problem is I like so many features of a variety of meters! As I said the One Touch with all of the bells and whistles is great but no backlight. The One Touch UltraMinis are great because they are so small but you can’t add data to them (pre meal, post meal). The FreeStyle Lite has no coding. Love that! The nano is easy to read and has some cool options.
I just need one meter that can satisfy all of my desires…oh and add in a good CGMS too please and I will never need to see a piece of paper and kill another tree again!
I sit here stunned and my heart breaking. I received an email telling me that the man who saved my son’s life over nine years ago has just lost his own son. A young man just 24 years old. I can only begin to imagine the numbness and the pain. Life is so incredibly short. We strive to do as much as we can each day and pray that we make a small bit of difference.
My heart goes out to the family. They remain in our thoughts and prayers. I have no idea of what happened to this young man and it makes no difference. His life on this earth has ended and he will undoubtedly leave behind and incredible empty space.
Our deepest, deepest sympathies to a family who has given us so much in allowing us to have such an incredible doctor as a huge part of our lives.
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.