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!