The holiday that almost wasn't....

Christmas is over. My tree is put away. The gifts are tidied and everything new has a home. The weather has been wonderful...barely a peck of snow to be seen so I decided to hop in my car and take my boys on a road trip for a week. We had planned to spend some time with loved ones elsewhere in the province so two days after Christmas we hit the open road.

I had spent Boxing Day cleaning and packing. By the time midnight came around I was exhausted but certain that I had all that I needed for two young men, two dogs, myself and life with diabetes. The cooler was packed. Insulin was stockpiled. Test strips and spare meters were safely tucked away. I had enough infusion sets to last two weeks and enough cartridges for a month. Life was perfect!

We set out early Sunday morning with the sun shining. This was going to be an incredible week. We had a lot of plans with great company. The trip was 8 hours long in the summer so I anticipated it being a little longer during the winter. With the lovely roads and Mother Nature on our side, we made great time. We listened to music, set travel basals, and ate clementines. Liam's rates began to climb a little but he corrected and we continued on in holiday bliss.

Within two hours of our destination, I reminded Liam to test and noticed that he was just grabbing a meter and getting ready to lance his hand. I asked if he had washed his hands. He said no and asked if I had any handwash? Hold it right there! What did he mean did I have any hand wash??? What was he washing his hands with the entire trip? I knew for a fact that the last time he tested was right after peeling a clementine for his brother and me. His hands were covered in fruit juice! He was high but what was the juice reading and what was his blood???

My heart dropped. I was terrified. My head knew that if he had endangered himself that we would have seen the repercussions by now but I began to shake. I kept driving for fear of completely losing my temper out of pure terror. His correction would not have been small. Images of seizures while I was driving were flashing through my head. I kept trying to breathe and stop shaking.

Eventually I settled to the fact that he was still alive and somehow he had once again lucked out. We arrived at our destination and began to unwind once again. We sat down to a lovely meal and unpacked our bags. Soon we headed to bed but for whatever reason I was awake by 1am. I went in to test Liam and not surprisingly he was high. I went to correct and noticed that he had ONE unit of insulin left in his pump! I began to search through our bags to find the cartridges. I found the insulin. I found the infusion sets. There were no cartridges! By 1:30 I decided to try to refill the cartridge we had and deal with things in the morning. With fork in hand I managed pry back the plunger and then proceeded to inject insulin into the cartridge. The kitchen smelled like bandaids by the time I was finished but he had insulin and I could breathe for a bit.

In the morning I called the pump company for help. I was told that this was a supply issue and not a pump issue so I had to call the supply people. They kindly gave me the toll free number which I called. Sadly they were enjoying Christmas and could not take my call at the moment. They said that I could leave a message and I did. While waiting to be able to talk to a real person the next day I refilled the cartridge that had more than a few air bubbles from my 2am filling. The next day I waited until noon before trying the supply company again. The good news was that it rang. The bad news was no one would answer! Thankfully I happened to have recently been in contact with a VP for the supply company and had his email address still sitting on my Blackberry...shock of shocks, I didn't lose it this time! I sent off a desperate email hoping that he was not on holidays and that he didn't think me too much of a pain.

I literally screamed with joy when I got a reply asking for the address I was staying at. He said he would try and have cartridges here for me the very next day!

Despite a bit of a bumpy start, my holiday has been fabulous. Great weather...anything that does not resemble snow in December is great in my world! A wonderful host and now insulin cartridges!

Happy New Year!

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.

Can I cry now?

Can I cry now? I feel like just sitting down and letting everything go. I am not sure if I would be crying for my failings or the failings of my child. Would it change anything? Probably not. Would I feel better? Well until I looked in the mirror and saw those horrible puffy eyes but then again they would go quite well with the increasingly greying hair.

Tonight was a repeat but worse of many nights we have had over the past few months. Liam has only just got a permanent teacher this week. I was away for the first day of this week. I was busy with his brother yesterday and then he was with his father last night so tonight I asked for the week's readings. Bad move...well bad move for my nerves.

Liam had forgot to bring his log sheet to his father's so he wrote things down from memory and meter. I wanted to see a few more days and could not immediately find his log sheet so I went through the meter. Again...bad move.

As I scrolled through his school meter I saw tests at 7 am and then nothing until 2pm. I saw readings of "HI". I saw tests at 9 am and then not again until 3pm. I saw lows that were never retested and then heading out to play on the playground. I was in shock. What the heck was wrong with the teacher? Why wasn't he reading the information I had sent to school? What was going on? Was this my fault? Have I been too lax in letting him test and learn on his own? I am asking if things are being done. He is lying to me and telling me it is but I am not looking at the meter each day. I am trusting him. This is my second go-round with a child this age. I should know better but funny it still hurts just as much.

I didn't know what to do. I told him I was sick and tired of this. How can I help him when he can't be bothered to help himself unless Mom is sitting on him. At home he tests fairly regularly. Does Mom need to follow him everywhere? He has lost some freedoms. I will be going into his classroom tomorrow. I am at school anyway but I will make a point to see that he has tested and to have a quick chat with his teacher. I have added more alarms on his pump. I hate having them on because I am the only person who seems to hear them. All it does is drain the batteries. When he is at home he ignores them. When his is at school, he seems to just turn them off. When he is at his father's house they all ignore it. The only one that it seems to help is the battery company because we end up going through so many more of them.

I have been told to step back and let him fall like this. I have been told to be there to pick him up, to help, to push. I tell others to do the same. The logic is sound but the practice? Its killing me and I worry that it is killing him. Am I expecting too much? Am I not on top of things enough? Should I be hovering again? I am going to have to in some respects but will we both get slack again? Will I feel comfortable and trusting again only to see another explosion of disappointment? Raising a teen is tough. Raising a teen with diabetes?? There is too much involved for one person but you do what you must so I will probably allow myself to cry for a moment and then I will pull up my boots and do what I must. I will hover. I will talk. I will check. I will listen to alarms. I will try and stay sane through it all.

I want a normal life!

I am tired of this. I am beat out and want off of this roller coaster. I didn't volunteer for it did I? Well maybe I said that I could handle anything as long as my son lived. I guess I can. I have managed this far but sometimes I wonder. Last night was definitely one of those nights.

My son kindly gave me a touch of his cold. I have been fighting sniffles and a sore throat. Add to that the fact that I have not been able to sleep for a few nights and last night I was exhausted. Bed was all I wanted to see. I drank some cold medicine. I crawled into bed with my book. I tossed and turned and soon midnight approached. I went in, tested Liam--17.8(320), corrected and crawled back into bed. Soon I was dozing into a lovely sleep for an entire four hours. At 4am I woke up and realized that I should get up and test Liam again. I pulled my weary body out of bed and headed back to his room. It didn't take me long to wake up when I saw 2.9(52) on his meter. I grabbed the juice and decided I was going to get a lot of reading done this morning! Sure enough it took an hour to see a rise to a point that I could go back to sleep.

Why couldn't we be a normal family and simply sleep through the night without worry? Because normal is simply a setting on the dryer and we are far from normal. We try though. This morning, after counting carbs and changing insulin cartridges we dealt with some "normal" things. There was the hair that would not stay in place and required Mom's magic touch to fix it all just so. There was the garbage that needed to go out. And there was the goodbyes that seemed especially poignant this morning. My sweet child was still alive, still healthy and still able to wish me safe travels before heading out the door.

Who needs a normal life? This one has some serious benefits.

Passing the reigns

Where does the time go? Its amazing how far we have come. Last year at this time, Liam was finally doing his first site changes. As you may remember, his doctor had ordered him to be doing this by his fall visit. The day before the said visit, he finally changed his site by himself. Now its old hat unless trying to insert in certain parts of his arms. At that point he tends to yell for Mom. He also tends to ask before jabbing a well used area.

At Liam's fall visit, his doctor said that he had to take more control of his diabetes. He had to begin logging and looking at what is going on. Mom was terrified. He is so young to have all of this responsibility. What was the doctor thinking? He was thinking that it is better for Liam to make mistakes and learn now while Mom is there to hover over him than to make those same mistakes when he is off at university and Mom is nowhere to be seen. It made sense.

I am amazed and impressed at how well he is doing. Liam is not a big logger and I am sure that when this is completely up to him, he will never log another thing again. Mom is a big logger so until he is on his own he will log. Ah the power!

It is interesting to see him log though because I am seeing how much he has learned and understands. His log from this weekend for instance shows some major highs after a meal. He went up to the 20s (360+) and there is a note that says "forgot to add in syrup for pancakes". I loved that he took the initiative to look around and see "why" was he so high and found a solution! My baby is growing up.

Before making any changes now, I also have him sit down with me. I try to do this at least once a week. We sit out his charts, I highlight the highs or lows, and then I ask Liam what he thinks. Do we adjust a basal rate or should we make a bolus change? He is usually pretty good about knowing what to do. We are even getting to the point of learning when the basal rate needs to be changed.

This entire concept still blows my mind--having a twelve year old responsible for so much. It scares me and then I realize that he has been watching all of this for almost ten years now. This has been his life. He has been learning for years. He has known since he was toddling around and trying to steal strawberries from the fridge that all of his food needed to be weighed and measured. He knows the carb factors for many foods and now has the scale and calculator handy every time he steals a cookie off of the counter.

We have come a long way. I never thought we would see a day when he could steal a cookie at anytime and eat it. Thank heavens for rapid acting insulin! He is in many ways a normal pre-teen. He is forgetful. He eats me out of house and home. He is special in many ways however. He has a lot to remember in his forgetfulness. He has to take over where his body has failed him. He must provide his cells with insulin. He must remember to test to keep himself in good shape. It is not an easy life but to watch him for the most part its nothing. Its amazing.

Failing

I had a recent conversation that left me scratching my head and wondering where I went wrong.

The conversation had turned to the condition on a great-uncle. He has poorly controlled Type 2 diabetes and has been experiencing complications for years. At the moment he has lost a toe and now, because of poor circulation, is looking at heart surgery and bi-passes in his legs. Those are the facts. He and his wife have worked for years to try and deal with diabetes but they are not winning. We all hope that he will come through the operations and be on the mend soon.

The problem arose in listening to the person recount the tale in their words. The story was changed to my great-uncle having already lost a large section of his leg. It progressed to the fact that "people with diabetes" can be rather embarrassing in their quest for the sweets that they cannot have. They obviously had way too many of them before they got diabetes and that is why they are in this situation to begin with.

Okay, back up the gravy train here bud! Was I really hearing this?? This was coming from a person that I had been sending information to and speaking with for almost 10 years. What in the world was going on here??? I was speechless (and that is no easy feat).

The conversation did not end there. This person when on to speak of other diabetics who had it "really bad". They of course had heart problems and did not live long. Sadly I had my phone on speaker and I just shook my head when looking at Liam. He said "They had diabetes and lost their leg? They had it really bad?" No this has nothing to do with you. We work very hard to keep you healthy. Your legs are fine. Your heart is great. Don't worry. More of the WT??? is going through my mind.

I actually ended the conversation speechless. I just got the impression, from trying to correct things earlier in the conversation, that the truth simply had no place in this conversation. First of all, it should be well known that sweets do not cause diabetes! My son did not consume any sweets at two that caused his pancreas to fail. My great-uncle who has Type 2 diabetes also did not like sweets. His heritage and gene pool made him susceptible to this vicious disease.

Trying to say there is no having diabetes "really bad". Diabetes is a horrible disease. It is a killer. You have Type 1 or Type 2 diabetes. You may have issues maintaining control but you do not have it "really bad"--its all bad!

Obviously I need to try a new tactic for educating people. My own family are not getting it. What am I going to do?

Awareness

I have been big on awareness for years. I want everyone to know about diabetes. I want them to understand the signs and symptoms. I do not want another family to go through what we did when Liam was diagnosed. I want doctors to be thinking. I want parents to understand. I want caregivers to know the serious nature of this disease. I want teachers to be caring and thoughtful. I want to alleviate the fear of the unknown and simply allow the fear of what we do know. Its a healthy fear that garners respect for a horrible illness.

This has been a huge part of my life for almost 10 years now. I don't think a lot about it. It is part of who I am. Liam has a very different take. Its something that is a part of him but its private. Its not to be shared. Its just to be lived with until a cure is found. He will get by. Leave him be and let him live his life. This means that when his teacher asked him to tell her about diabetes his only response was "I have no restriction on what I can eat." That told her a lot! She thought he could out grow this. Boy did she learn a few things with me.

Recently I have become to see a third perspective when dealing with this disease. Its what I would have to call the car phenomenon. You know that when you buy a new car its perfect for you! No one else has a car like it. The color is unique. The styling is just yours...until you drive off the lot. Suddenly there are 10 other cars your color on your block! You see twenty other cars of the same model in the grocery store parking lot. Your special, unique car is EVERYWHERE! It turns out that the same can be said when you are introduced to someone with diabetes!

A friend of mine has two aging parents who live with Type 2 diabetes. They are able to manage with diet and exercise. The father has to test once or twice a day but his control is excellent. My friend had not really had much to do with someone with Type 1 until meeting my son. There was a kid that he went to school with. He knew that there were dietary restrictions and needles. He knew that the child didn't always feel the best but it was nothing more than a fleeting memory.

He watched us with Liam and still didn't quite get the full scope. Liam had a low and he knew that I was up through the night. He quickly heard the constant..."Liam did you test" and wondered how in the world the poor child handled that child of nagging. I tried to explain that it was necessary because Liam forgets two seconds after you tell him something. I didn't push any learning and simply answered questions.

Imagine his surprise when he went to the grocery store and a man came and sat at his table with him. There were all sorts of other places but this guy decided to sit by my friend. He told him that his blood sugar was low and he had to eat now. I am guessing he told my friend this because he started his meal with his dessert and my friend was looking at him a little odd. My friend was blown away by the coincidence. He had only known Liam for a short time and now he was meeting a stranger who had diabetes as well.

As I said, its the car phenomenon all over again because the people he met did not stop there. He took his car to a garage to do some work. The owner's wife has type 1. He took his moose to the butcher to be cut up. The butcher and his friend both had type 1. This was the biggest awakening for my friend. These gentlemen told him of the amputations and complications that they had experienced. The butcher showed him his pump and told him how important it was to his life. My friend and his brother walked away speechless. They now understood why I harped on to Liam about testing. He began to understand how terrible diabetes was. He is shocked by the number of people that he knows living with this disease but before meeting us, well it somehow never came up.

Letting go

This has been the strangest school year for me. Liam's teacher quit the day before school started. He now has a substituted until the position is filled. I struggled to know what to send to school regarding information and what to ask for in regards to Liam's care.

Liam has spent most of the summer doing his own care. He has been in charge of bolusing, testing, counting carbs, and changing sites. It has given both of us our freedom but being twelve he still forgets things. When he was home, Mom could remind him here and there and check on things. How would I handle this at school with a new teacher? Would I ask for someone to continue to hover over him or should I let him fly or fall on his own accord?

I have opted for the fly or fall approach and I am wondering if it was the right choice. I sent the teacher of the day a two paged letter on Liam's care. It tells him when Liam should be testing, how he responds when high or low, and what the teacher needs to be aware of. I have not gone in to really speak with this teacher...mind you I know him and he has taught Liam before. I am really struggling with how much to let go and how much to control. I guess its learning to guide rather than doing it all and boy its not easy!

I realized this the other day when grocery shopping. I know grocery shopping? But as I was cruising through the aisles a woman said hello to me. I was not paying attention and didn't notice her until our carts were side by side. She is a provincial minister and a lady that I have dealt with for a number of years on various diabetes related issues. She asked me how Liam was doing and what grade he was in now. I told her that he was in grade 7 and he was doing well. Mom on the other hand was having troubles letting go and knowing how much freedom to allow him. We chatted for a bit and then both went on our way.

Afterwards I began to further question what sort of accommodations does a child of his age need? Life is very different now than it was when he was six. He can handle his pump, make care decisions, and total his carbs in a blink. When he is low or high however, his judgement is still impaired. The danger of these situations have not changed and maybe they have become worse as he now "thinks" he can handle many of them without help.

I know that this is only the beginning. I know that my job has been and will continue to be, to be a teacher. I also realize that I have done a pretty good job so far. His decisions are not always what I would do. He has a more laid back attitude but its his disease, its his body. His results are what counts and the little rat somehow always manages to make good decisions.

I will continue to educate. I will continue to advocate. Liam will continue to grow and take over the care of his body and his disease.

Where were you?

Its that time of year and its amazing how crystal clear the memories are. Its equally amazing how much one day can influence every part of your life.

September 11th. The day that changed North America forever. The day terrorism was not just something that happened in places across the ocean but something that could happen here. Something that could touch us. Something that could touch the ones we love!

September 11, 2001 Liam and I had headed out to do some shopping before picking up my grandmother at the airport. We had the usual diabetes supplies and were carrying on as usual when my cell phone rang. It was Liam's father. He told me that one of the Twin Towers had been hit by an airplane and it had fallen. I told him that it had to be a mistake. There was no way that this could happen. It certainly could not happen in New York. He agreed that it was odd and we hung up. Not long after my phone rang again. This time it was the airline that my grandmother was flying on. The woman kindly explained to me that all flights in North America were being grounded because of what was going on in the US. My grandmother was in Halifax and they would let us know how she would be making it to us but it would NOT be via air.

I was shaken and quickly headed home. Like the rest of the world, I was stuck to my TV for days. I was shocked and then began looking for information on family and friends. I had recently joined a parents forum and knew that there were some parents on that list who worked in New York City. We all began to worry about their safety. I also had family that lived in the area. My cousin and his wife were living in New York. Where were they? My mom's sister in law lived on Long Island and her son was an NYC police officer. Where was he?? Thankfully everyone was soon accounted for. My cousin was suppose to go to court in one of the Twin Towers for a parking violation but his appearance had been cancelled so he was not there on that day. My mom's sister in law's son had the day off but quickly returned to the city to assist with the clean up.

This was just the beginning. We now began to worry about the fact that I lived on an island. What if supplies were cut off? How would we survive? This is a hardy area. People lived on nothing for years but I have a son with diabetes! How long could he go without real food? How long could he go without insulin? What if we ran out of test strips? Our world quickly changed. I hit the pharmacy as soon as I could. I began to make sure that I always had at least a 2 month+ supply of test strips. We had to keep at least a 3 month supply of insulin in the fridge. There were other accommodations made but stockpiling was the order of the day.

Its been 8 years now. A lot has changed. Airport security is tighter. Our way of thinking is different. I still horde supplies just in case. I still worry "what if?". Its not a way to live and I try to ignore many of those fears but it is the reality of our times. Sad....

The Towel

The other day I was giving some serious thought to my life and more importantly to the life of the website. The recession has of course had an impact on many things. Governments are not choosing to expand pump coverage or begin new programs. Individuals are being laid off and cannot often afford the "luxury" of quality medical devices.

In my own life this has translated to less money coming into the website. The website has costs associated with its daily operations as well as the long hours that I put into it each day. I began to wonder if it was worth it. Perhaps I should look into a different way to make a living. I never created the site to make my fortune. I did it to help others but I still had to survive. I added an online store and accepted advertisers to help offset the costs and keep me afloat. Lately advertisers are having their budgets cutback and revenues are down.

I felt like I was drowning. I had been looking into getting a CGMS for Liam at the request of his doctor. I had been looking into options since March. It was September and suddenly costs were making such a piece of equipment look more and more like a dream that was not currently attainable. My income was down. Liam's father was going to be laid off for the second time in a year and asking him to cover his share was going to be difficult for him as well. I began to think that I really should be re-examining my career choice. Yes, I LOVE what I do. I LOVE helping people. I LOVE working for change but we had to live. We had to make ends meet. Maybe this was not what I was meant to do. Perhaps it was time to fade into the background.

Well those were many of the thoughts that ran through my mind yesterday. I had a dark shadow following me but it didn't last. A friend suggested I look at things in a different way. I revisited my advertising fees and made some changes. I dug out old contacts and began to look into new options. I will be going through the store and finding new items to put out there for people--new styles, new sizes that hopefully will be interesting and remain affordable. I began to feel a little better. Maybe things would get better. Maybe I could still do this...maybe.

Then I got "the" email that changed it all. "The" email that kicked me back on track. "The" email that reminded me why I do what I do. "The" email that reminded me that I do make a difference in lives and can't fade into the background yet. It was an email from a friend. Her daughter has Type 1 diabetes and she recently got around to making her application for the DTC. She had a few questions and I guided her through the process. It was no big deal and I know that the money meant a lot to her as she is another victim of the recession. She had lost her job earlier in the year, so imagine my shock when she said that she had tried to make a donation to the website. She felt it was the least she could do for what I had done for her. I am glad that this came through an email because I was stunned, shocked, and so very appreciative. Diabetes Advocacy is not a charity. Donations are not tax deductible. There are two PayPal links that allow people to "donate" to the running of the site if they choose but it is not something I have ever pushed or advertised. For her to want to give back made me realize that I can't throw in the towel. I have to keep going. Life is very good and it will only get better.

Thank you so much for reminding me of that!

Back to school

Its that time of the year again....time to head back to school. Many parents love this time of year. I hate it. Its not just getting back into a routine and not being able to pack up and go when you want. Its not just the thought of cold weather coming. Its new teachers, new people to educate, new worries, new growth to deal with, new issues from other families.

Liam was to have a new teacher this year. I was nervous. He goes to a French school. The teacher's English skills were minimal. My French skills are worse. I had already organized a meeting that would involve the principal and the teacher. I wanted a translator and someone on my side.

As school opening neared I had to bite the bullet and prepare documents for school. The teacher had to know when Liam needed to test, what diabetes was about, what his pump was, his need to use the washroom, what to do in case of exams, etc. I was really not looking forward to all of this but I got it done. I had a two page sheet on basic care. Liam is doing so much more of his own care, I just basically needed someone to watch out for him when high or low and to allow him the freedom to look after his disease. I was praying it would happen.

My prayers were answered! The teacher Liam was to have quit! The teacher replacing him for now was someone that I knew and knew Liam. I was relieved! The sheets will still go to school with him but they will be read and followed. I can breathe again!!!!

Liam
Type 1 -Insulin Dependent Diabetes Mellitus
(Grade 7)

INSERT PICTURE

If there is an emergency or questions regarding Liam’s care please contact
Barb at 6xx-xxx6 (home) OR 6xx-xxx0 (cell)

Liam has type I diabetes. Diabetes is a chronic, debilitating disease that can affect every organ system in the body. Type 1 diabetes occurs when the body’s immune system is triggered to react against and destroy the insulin-producing cells in the pancreas. Without the hormone insulin, the body cannot use glucose (sugar to fuel the cells of the body). As a result, the level of glucose in the blood will rise, causing symptoms. To compensate for the lack of natural insulin, Liam is currently using an insulin pump, which is attached to his body 24/7. He must never remove it. This pump does not regulate his blood glucose levels; it’s just another way to deliver insulin into his body. His Blood glucose levels can still go high or low.

Low Blood Glucose…This is an emergency situation and must be treated immediately!!!
Low Blood Glucose Symptoms
Grouchiness, shakiness, sweating, fast heart rate, pale skin, dizziness, tired or falling asleep, sudden moodiness or behavior changes, difficulty paying attention, or confusion.
If Liam exhibits any of these symptoms he may not be able to care for himself. He MUST be monitored and CANNOT be left alone. His thinking will be impaired as the brain is being robbed of vital fuel to function. He has too much insulin in his system and is in need of glucose right away! Liam has glucose tablets with him and will also have a supply of sugar in his red emergency kit. If he runs out of any of these supplies please ensure that I know to replenish them. If you run out and he needs glucose any sugar or sugar product can be used—spoonfuls of sugar, or hard candies for example.
What to do?
If Liam tests and he is below 4mmol, he must immediately have 3 glucose tablets and retest in 15 minutes. He CANNOT be left alone during this time. If his blood glucose level does not go up in 15 minutes he must have more glucose and retest again in 15 minutes. Repeat until he is over 4mmol. IF HE IS BELOW 4 mmol BEFORE GYM OR GOING OUTSIDE HE CANNOT TAKE PART IN THE ACTIVITY UNTIL HIS LEVELS REACH A SAFE LEVEL. A “safe level” before physical activity would be defined as any reading over 6mmol.
If he is under 4mmol before any exam, he is not physically able to take this test and it must be rescheduled when his blood glucose levels are above 4mmol. When he is “low”, his brain is starved of fuel and he will not be able to think or function properly.

High Blood Glucose…this can be a serious situation that can quickly become an emergency.
High Blood Glucose Symptoms
Tired, grouchiness, difficulty in paying attention, thirsty, frequent need to use the washroom, sore stomach, headache, blurred vision, confusion.
If Liam exhibits these symptoms, have him test to ensure the proper method of treatment. If he is “high” (a blood glucose level over 10mmol), he will give himself more insulin through his insulin pump. He should retest within an hour. If his blood glucose level has continued to rise, he should contact me for further instructions. His pump may not be working and this can quickly lead to vomiting and much more serious conditions.
If Liam’s blood glucose level is over 16mmol before an exam he is not physically able to take this test and it must be rescheduled for a time when he is healthier. A high blood glucose level impairs the thinking, processing and vision. He is not able to function properly at this time.

Accommodations that are necessary:
*Liam shall be permitted to use the bathroom without restriction.
*Liam needs to have immediate access to water.
*Liam will have an emergency kit containing glucose and spare supplies in the classroom as well as glucose in his school bag at all times.
*Liam will have access to the phone to call home regarding instruction on his care when running “high” or “low”.
*During a fire drill, Liam’s kit (blood glucose meter and treatment for hypoglycemia) MUST accompany him from the building.
*Liam will be allowed to leave the classroom to wash his hands before all testing times. Liam must test and record his blood glucose levels at the following times:
9:10am
Before morning snack/recess (approximately 10am)
Before lunch (12pm)
2:20pm…If Liam is low at this time, ensure that he is over 6mmol BEFORE he leaves the school grounds. If this is not possible, have him call home to be picked up as it is not safe for him to ride the bus or walk home.
Before and after returning from gym class.

Is it just me?

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.

Getting Ready for School

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.

Back from Vacation

Each year we take off for a bit of time away. This year was no different. My oldest was dying to see AC/DC live in concert so we all headed off to enjoy their outdoor concert. It was definitely an experience as you can read in our earlier blog post. My boys loved it and that made the hours of standing very worthwhile...even for those of us with aging bodies!

This trip was different in so very many ways. One of the biggest for me was the fact that Liam has become so self-sufficient in his care. When he is at his grandmother's house, she always makes him look after his own carb counting, etc. She will remind him to test and such but he is in charge. This is because he can--and he is not keen on her nervous attempts at testing or site changes. With Liam on his own and taking charge, mom is able to take a bit of a diabetes break. There were no worries when I went anywhere without him. There were no concerns when he went off for a day with his grandfather. Diabetes was there. Highs were there and even a few lows but we took it all in stride. What a nice change!

Another difference in this trip was FINALLY getting to meet a family that I have been corresponding with and have helped on a few issues for years. I am in their area at least once or twice a year but we have never managed to get together. This time was different. This time we planned ahead and made sure we would connect! Sure enough, the first free evening we both had it was arranged that we all meet for coffee. It was fabulous!

I love meeting my extended diabetes family in the flesh. It is always so comfortable and amazing. This meeting was no different. The three of us sat and talked until our bottoms and our backs could take no more! We talked about diabetes care. We spoke of transitions. We spoke of everything you could imagine and then some. They complimented me on what I have done but they really inspired me as well. As we chatted about this and that, they kept saying that I should write a book. I laughed, and when I sit and talk to people I can go on so who knows! I do have a book written. It needs a lot of work. I have no clue as to how I would go about getting it published or even having someone interested. As I said, it needs a lot of work and I am sure some professional guidance. Their encouragement has made me think however. Perhaps this winter will see me bring it back out of my archives and see what can be done. Taking my blog to the printed page....who knows!

Random Thoughts

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.

Concert with diabetes

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!

Gadgets

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!

Heartfelt condolences

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.

Pizza really is evil

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....

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.

Low, low and lower

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.

Vomitting Fun

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!

Sometimes you're the windshield, sometimes you're the bug

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????