Happy Holidays

Every day I have meant to sit down here and write about so many things. There has been rumblings of advocates in Ontario wanting to see change in schools. There has been my own research and internal battle on whether or not to get a CGMS for my son...and of course there has been the diabetes roller coaster ride that just never seems to end.

The past 24 hours however have had me recollecting "Christmas with diabetes". Times have changed a lot over the years. We no longer wake Liam up to eat at certain times or require that meals be at a set point in the day with a fixed carb value. This year his teacher gave him a box of Rollo chocolates for Christmas and his breakfast was a diet root beer that he found in his stocking--at true breakfast of champions! He was woke up when Mom was tired of staring at the gifts and wanted company. Brunch consisted of eggs, turkey bacon, toast and chocolates. Our Christmas dinner was a never ending plate of potatoes, stuffing, salads, and turkey with diet Pepsi in a wine glass and apple crisp to top it all off. His pump was steady trying to keep up with the next plate full of food but I guarantee the child is not hungry this evening!

There has been a bit of extra testing today has he embarked on some Wii mountain climbing and high powered dirt biking. After listening to my ceiling rattle and waiting for things to cave in, I felt that a bit of testing might be a good idea. Ironically all was fine!

There were some things that reminded me that our lives are a little different because of diabetes however. Last night I chose to take my kids to Christmas Eve mass. We are not a religious family but its a tradition upheld by friends and one that I felt would be nice to continue with my children. The families all walked over to the Church. Liam needed to test once we found a pew but was concerned about the noise of the meter. I turned off the "beep" and he tested. I am sure whoever vacuumed in there today found a stray test strip. It would have jumped from his pocket I know it! He was running a little high and it was noticed by the family we were spending the evening with. They were shocked to see Liam have only one piece of pie. My dear friend finally turned to him and asked "Who are you and what did you do with our Liam?" Liam said "I am high and I just can't really eat right now."

You have to know how odd that would sound if you didn't live with diabetes! Thankfully they have been around us for the past 12 years and are fully aware that it is not a big deal for my 12 year old to be "high". Well they know its a problem and they understand that he doesn't feel well but they are not searching for drug paraphernalia or calling child protective services.

I have done a lot of personal reflection over this holiday season and its amazing how far we have come. Diabetes, the teen years, and puberty continue to threaten my sanity but with the many advances in care and the support of new and old friends--we are truly blessed and will somehow make it through this ride stronger and richer for the experience.

Happy holidays to one and all and thank you for being their for us!

New tricks for an old dog

After feeling like a failure upon receiving the last diabetes "grade", I sent myself back to school. I got out the John Walsh "Pumping Insulin" book and began to carry it around with me. At first it simply enjoyed a few rides in the car but eventually I took it out of my bag and began to read.

I have read these books more than once and keep them for a reference source. After pumping for seven years, I decided that it was time to see what more could be done. If needed, I was willing to completely start over with basal rates and bolus ratios. There had to be something I could do to help me get through puberty...well besides let go.

The first few chapters were all about why people would want to pump, what to look for in a pump, etc. Great information but not what I needed to know at the moment. I kept reading because I knew that no matter how basic some parts may have seemed, I was going to learn a lot once again. Sure enough it happened! It was not exactly like a lightening bolt revelation. It was more like a "you must be kidding? Who could really do this?" sort of moment. In fact I instantly pulled out my blackberry and sent out an email asking "who can really do this??" Well it turns out a lot of people.

John Walsh was discussing the importance of prebolusing. When you are dealing with a small child this task becomes almost impossible--well at least in my house. We never knew if Liam would eat anything let alone to try and prebolus for an entire meal 20 minutes before he was going to eat! Recently I had been told to get him in this habit of prebolusing. It would have a real effect on his A1c. We had been trying but I wasn't going crazy about it. After reading the chapter and talking with other parents, I decided to be a bit more aggressive with this. We began to prebolus as soon as we were preparing to sit down for supper. We were still far from the required 20 minutes but much better than 20 minutes after we had begun eating or worse--simply forgetting altogether.

Prior to this revelation I just didn't know what to do. There were highs that I could not bring down and I was going crazy. Maybe hormones have just been kind to me but we have been prebolusing for a week and WOW! Readings have been in range an incredible amount of the time. It almost scares me when I look and see such great readings. Now when Liam is on his own, he is still not perfect. He still forgets to bolus let alone prebolus but when he is around Mom the new habit of test, bolus and prepare your food is working for him.

I went a step further today and asked "have you noticed how great your readings have been? Don't you feel really good?" The answer was typical Liam, typical teen..."My readings have been in range? I didn't notice." Ahhhhhh! Oh well Mom noticed. Mom feels a bit better and will take this small bit of respite while I can because I have been assure that it will definitely not last.

Failing Grade

Its funny how everyone thinks of the A1c test if it is the true measure of your ability to be a pancreas. What is supposed to be a guide becomes a ruler on which to judge if we have "passed" or "failed" in our ability to beat the diabetes gods for the past 3 months.

Liam's A1c was done about a month ago. We finally got the results yesterday. I knew I would fail. I knew I had been a bad pancreas. I knew that I wasn't logging. I knew that Liam not testing and me not being on top of it all would come back to bite me. I also knew that my son had begun puberty and hormones were now seriously messing with our ability to get any sort of handle on control.

I failed. By my standards I failed rather miserably. I believe it is the worst A1c we have had. Yes it could have been worse but I still feel that I have failed. I know there has been a burn out factor and still the good old "mommy guilt". I am burnt out after all of this time and yet my child will have to carry this burden for much longer than I will. Who am I to burn out so quickly?

Good or bad, Liam has a much more lax attitude towards his disease. He takes things as they come, corrects as he goes along and does not seem bothered by much. Mom takes each high or low as a personal failure and over the past few months it has been worse than ever. I have become my own worst critic. That is not a good thing.

I have had to step back and look at the advice I give so many newly diagnosed parents...look at the world 4 hours at a time. If you have a good 4 hour period be proud and know that you were a good pancreas. If you get a longer stretch with good numbers then do a happy dance. You were amazing! We have seen good stretches. I have made good calls but I am still sending myself back to school. Time to dig out the John Walsh "Pumping Insulin" books and make some new notes. I haven't sat down with any of them in a few years and I think I need to start fresh. Its time to clean out the cobwebs and look at things as if I was just starting out. Its easy to get complacent. You cannot let diabetes rule your life but complications are real and a good respect of the "gods" you are playing with is not a bad idea either.

Back to the books!

SupperNanny Tackles Type 1

I don't think I have ever watched the show from start to finish. I never record shows anymore and I don't know when I have had people go through so much trouble to find me a link to watch a TV show but here you have it...a bunch of firsts for me and a big Wow!

For those who never watch this show either, there is a TV show on called "Suppernanny". She is a British lady who comes in and straightens out your family when you can't do it on your own any more. In 41 minutes she fixes your marriage, makes all your children angels and teaches everyone how to get along with each other. This is why I don't tend to watch it on a normal day. I am just not into shows that make life so black and white and pat. I had however heard that she would be going to help a family who had a child with Type 1 diabetes.

I don't know if all diseases are like this, but those of us who live with Type 1 diabetes in our lives are harsh critics. I think it has to do with all of the misconceptions that we deal with on a regular basis. We are so used to defending and teaching that we are quick to judge when Type 1 diabetes is portrayed in the media. In our defence, a lot of media outlets do make horrific mistakes but still we are a tough crowd to get something past.

Supernanny had received a passing grade. No rave reviews now but most parents seemed to be impressed that she went in with a good general knowledge and was able to separate the disease from the child's behavior. Now I was really curious! I had been traveling when it was originally aired but no fear because these things are always to be found online. I received three links to the show before I was given one that was usable outside of the US! Finally this morning I was able to sit down and watch it.

I was impressed. I still will not be watching the show but for a change the focus was on Type 1 diabetes. They didn't fuss too much about the little boy who loved to pound on his sibling. They did focus on Mom's fear that her son would die from Type 1 diabetes just has his grandfather had. They didn't focus too much on the big sister who was sick and tired of cleaning up after two obnoxious little brothers. They did focus on the fight to get the child with Type 1 to eat all of his food. They showed blood glucose testing. They showed injections being injected. They showed carb counting and insulin calculations. They showed a child who refused to eat and threatened to vomit. They showed a child who could take 2 hours to finish a meal.

Now if Jo the Supernanny was also a super CDE then she would know to put the child on a different insulin regimen and no longer worry about feeding the insulin except in the case of lows. She would then be able to give the parents the power to say "If you don't want to eat fine but you won't be getting anything later" and mean it.

We are coming closer to 10 years since diagnosis with each passing day and some of what this family was dealing with I remember as if it was yesterday. Liam was 2 and this child was 5 but still both of them used food to control a situation that was well beyond their control. Liam would keep an entire meal in his cheek without swallowing. He would finally swallow only to vomit it all back up. He would take 2 hours to eat a pop tart. I would end up feeding him almost anything just so that he had the carbs to cover the insulin that was already in his system.

I will remain eternally grateful for the incredible support we had both in his diabetes clinic and through some wonderful people I met online. They finally got me to click in to the fact that if I didn't inject him with the fast acting insulin he would be okay with minimal food. We were using NPH at the time and Humalog. As I learned how the insulins worked, I began to have power as a parent again. I could allow him to leave the table without touching his food and not worry about him passing out in 5 minutes. I was free to discipline him again and his doctor encouraged it! It was so liberating.

As you know if you have read my rantings before, I still get frustrated. I still get worried. I still have fears. I have to learn to move past them so that my soon to be teenaged son doesn't continue to learn how to use those fears against me. We will be okay. He has a different way of taking care of himself but he is doing a good job. Together we will get through life and life with diabetes. One day he will be a confident, resourceful young man who just happens to have a life-threatening chronic illness.

November 14th is World Diabetes Day

Yesterday was World Diabetes Day and someone mentioned that people were saying "Happy" World Diabetes Day as if this was a happy occasion. Some noted that it was a happy occasion simply because it was a day that they did not feel alone. It was a day when others would recognize the existence of a horrible disease.

Personally I did not call it a happy day but did feel that it was a day to celebrate. November 14th is chosen because it is Sir Frederick Banting's birthday. As one of the men credited with the discovery of insulin, I am more than happy to celebrate his birthday. Like too many others, I have seen what a person who lives without insulin can look like. That is just too terrifying not to celebrate the fact that this wonderful man made such an incredible discovery. It is a day to celebrate the fact that my child LIVES each day because of that isolated source of external insulin.

Someone suggested that this is just another day. We live in isolation. People do not understand the hardships no matter how much many of us try to educate them. I agree that most people don't get it but every time just one person tries to learn. Every time one person asks just one question to educate themselves, that is one more person that we have reached. It is one more person that we have given a glimpse into what our lives are like. It is one more person who can begin to understand and work beside us.

November is Diabetes Awareness month. I admit that this year I have not been as loud or as "out there" spreading the word as I have in the past. As someone once told me, we have to do this every day not just one month out of the year and that is something that I try to do. I continue to work to educate and make people aware...one person at a time is a very good start.

Diabetes Marshmallow

This past week has been very full and very emotional. There have been many decisions on my plate and many issues floating around. Always front and center is diabetes care. I was lucky enough to have some wonderful friends to speak with and try to wrap my head around what could be expected of a 12 year old boy. In the process I was told that when it came to diabetes I was a softy. I let my own guilt and issues get in the way of my child's best interest. I had a friend read through my old blogs and suggest that I had just as many highs and lows as my son. It was suggested that I was weak. I was shocked. I have been called a lot of things in my life but weak was never one of them.

I decided to begin to read back in my old blogs myself and form my opinion of me. Well, first I have the utmost respect for anyone who wants to learn that much about diabetes and my opinions to spend the amount of time required to go through all of my old blogs. I have spent part of a day and have only managed to get through one year! Yes I have been distracted by a few other things but still to maintain that kind of interest takes a very special person and I feel very lucky to have that sort of a person interested and involved in my life.

But back to the point...was I really weak and soft? Well I still don't see myself as "weak" but I certainly am weak and developed very poor coping skills when it comes to diabetes care. Did I just admit that?? As I read through one year I realized that I took a very tough stance when it came to government. I have lofty goals that are commendable and that I still stand behind when it comes to getting everyone living with diabetes the best of care in school and throughout their life time. I am horrible when it comes to being strong with my son.

I was told by a psychologist that deals with this issue that I was allowing my issues with this disease to overshadow how I teach my son. In reading, he was so right. He gave me new tools to move forward with and funny but when I have started to use them I feel less powerless, less sad, and less pathetic. I have worked very hard over the past two years to overcome many personal issues and to be strong in myself. I have learned to relax and take life as it comes. Sadly I was not doing this with diabetes.

My writings are filled with "but he will have to live with this forever and I should give him a break". In conversations over the past week I have come to realize that I am not helping him in that. He does know how to "play" me. He looks at me with those puppy dog eyes and while I will never melt for anything else, I will give over and do whatever chore it is that he needs to do. In looking at how I have reacted to issues of forgotten meters, strips and testing--panic is my first mode of attack. This does no one any good.

We will see how I do when the next crisis hits but so far I have been able to be stronger and "just say no". Now that seems weird but I have seen the look in my child's face...I can get her to do this. It made me realize that I cannot do this. I am not helping him. I would not do his homework for him and I cannot do his basic D care. Funny, since I have made him more responsible and given consequences for not doing so he is much more on top of things. This may falter. He may test me and I may get frustrated but I am going to try to remain more calm. I read through crisis after crisis and funny but no one died despite my fears. The world did not crumble and life was okay...except for my own nerves. I was the only one damaged and that has to change...well I can hope and work on it anyway!

Support

I truly am one of the luckiest people on the planet. About one year after my son was diagnosed with diabetes I joined the world of technology and "found" the Internet. I had been struggling for most of that year. I knew no one with diabetes. I was living far away from family. Life was hard in a lot of ways. I had a child with diabetes who hated to eat. I did not have a clue how to give him the insulin I knew he needed and keep him conscious. I was spending more meals in tears than not. I was at my wits end.

I searched for children with diabetes and it did not take me long to find my life-line. I found the Children with Diabetes website but more than that I found some incredible friends. I found people that would challenge me to do more...and I did. I found find friends who would help me when times were tough...and they were. I found friends who would cry with me when that was all I had the strength to do. I found friends who believed in me.

Over the years I have lost track of some of these people but many more have remained incredible friends. I have been able to give back to some people and hopefully be there for a few more. I learned about "Friends for Life". Those are people who are brought into your life because they are struggling to deal with the same chronic illness that you are. They have been there, done that...and guess what? We do have t-shirts!

As I posted the other day, my latest trial has been puberty and not testing. I went to my CWD email list and asked for advice from those who had survived the teen years and have such incredibly well adjusted young adults in their lives. Once again I found awesome advice, incredible support and just as importantly, I was able to open up a venue for others to express that they were going through the exact same thing and how they were handling things.

I wasn't alone and funny but even those kids that I thought were perfect had had their moments as well. As terrible as it sounds, that made me feel better too!

One of my friends provided me with extra support. She knew of someone who specialized in this issue. He had lived with diabetes for almost 50 years and was well versed in teen aged issues. He kindly called me and we chatted for a bit. He gave me some guidance and helped me to put things in perspective. He told me to call anytime. His time is paid for by Animas (Johnson and Johnson) and they offer his service freely. He was worth his weight in gold to me. I am not claiming that life will now be a bed of roses. He said some very powerful things and I have a LOT of work to do. He did not claim that this would be a cure and my son would instantly realize all that he had to do, the dangers of diabetes, or the sacrifices of his mother. Actually he claimed just the opposite...the kid will hate you but it will work out. Ironically, that was comforting.

Forty-eight hours ago I was stressed, depressed and alone. Today I am know how un-alone I really am. I have incredible friends who look out for me no matter how far apart we may be geographically. I truly am very blessed.