DiabetesAdvocacy 2006 Blogs

I guess "blog" is what they are called these days. The following is an editorial devoted to my own ratings and ravings. Please feel free to comment, rant or rave with me at any time!

Please note that opinions expressed here are simply that, opinions. They are not meant to replace medical advice or reflect anything more than the feelings of the author at the time.

2007 2006 2005

2006

December 30, 2006 I have finally figured out why test strips are so expensive. It turns out that they are ALIVE!!! I bet you didn't realize that but its true! How else do you explain the fact that there were test strips under my tree when I took it down? There were used test strips by our shoes at the front door. There were strips under my dresser. There have been strips in the kitchen, the washing machine, the car, the driveway! I have even heard of people finding them in their fridge! Liam's teachers have even found his strips in their pockets!!!

I am convinced--they are alive. We have a bottle. All strips go in there. If they don't they sit in Liam's kit. They must be alive to move to all of these other spots. Yep, that's why they cost so much money--they are creatures with legs!

December 29, 2006 I hate doing homework when Liam is high. It took him about a half hour to do chapter summaries of two chapters in a novel he is reading. It took over 4 hours for him to recopy the corrections! I was ready to kill. He was in tears. I finally sent him to read. He complained of a headache. I was complaining of a lot of stress!

I began to think in the larger picture. I was frustrated because I know how important it is for Liam to get this work done in a specific timeframe. He has a certain number of chapters due when he gets back to school. We have been taking our time and he is doing fine. I really should have just stopped yesterday and done the work when he was in range--new child then! My thinking was what about when he is an adult? When he is at university or at work? He can't stop because he is high and can't think. What do adults do? I know they have to function but I have a friend who has told me that some times he can barely stand. I have spoken with him when he is high and you can tell his thinking process is not what it should be. It is painful to watch in anyone when you know. Sadly so many people don't know. They don't get it and adults have to fumble through. SCARY! I so hate this for everyone--Liam, friends and others that deal with this on a regular basis. We need that Sylvia Brown's predicted cure in 2009---but sorry, I'm not holding my breath yet.

December 27, 2006 Perfect days and sucky nights..... Good thing you can't actually hear me sing that!! Daytime numbers have been good but night times? No gaining control! I have upped one basal. I will see how that went when he gets home. Next I will have to raise another. The truly scary part? I remember when his total basal for the day was about 8 units. We are now and over 12 and I know that the worst is yet to come!! Its what his body would need naturally. Its what his body would need naturally.

December 26, 2006 I hope Christmas Day brought wonderful blood glucose levels to everyone! Liam was doing pretty good. When you consider the amount of food eaten Christmas Eve and then continued over to Christmas day I was really impressed. He had one low but just before he left to visit his father for the night the tides changed. He was high. He came home, tested, and said "I knew I felt weird". We corrected and I suggested a site change (which is due today). He of course said no. He said "With all of that food, we probably just miscalculated something. I am sure it will be fine in a bit." Well I never heard from him today or last night so I guess all was fine. I can't believe that my baby is making such adult decisions and making them based on very good logic. Its bittersweet once again. I am glad he can do it but he is 9. He shouldn't have to do it! We all have things we shouldn't have to do but they are done anyway. I guess I should be able to handle it by now.

December 24, 2006 It is almost Christmas day and I am getting ready to spend some quality time with my family and friends as we enjoy the festive season. May everyone have wonderful bg levels. May your stockings be filled with love and good fortune. And may you all enjoy a safe and happy holiday season! Thank you for being a part of our family at Diabetes Advocacy and we wish you and your's nothing but the very best during this time of love, peace, and joy!

Merry Christmas from my family to your's!

December 23, 2006 All the years and experience of the past few months I should know better right? I mean you just cannot beat the diabetes gods! Why do I try? Why do I fool myself into thinking that maybe I know better and am on top of these things?? Because I am a fool and fools do foolish things. Alright backtrack a little....yesterday was my boys' last day of school. I needed to pick up a few last minute Christmas items so we decided to do our shopping in the evening. The idea was that I would get the few things that I need, we would have a nice family supper, and then we would cruise around and look at people's Christmas lights (while my own children ridiculed me for my lack of outdoor decorations). It was a very nice night. All went according to plan. Of course Liam's pump beeped while we were shopping to remind us that we needed to do a site change. I said we would do it as soon as we got home. Getting home took longer than expected and by the time we got back we just wanted to veg. I decided that what was one more night? One more night--combined with a very high fat dessert after all of my low fat meal choices for him, meant that he was high for the better part of the night! On the positive side, this mornings wrestling with Mom, two boys and two dogs led to his site being pulled out and us having to change it NOW. Oh how I love diabetes :-(

December 21, 2006 Yesterday I learnt the real reason that my son has a pump. He wanted to go down to his friend's house. I said he could but asked what time it was as I had taken off my watch. "Well," he informed me, "If you had a pump you would always know what time it is!" At least he sees having a pump as positive thing after all the years. Its an awfully expensive watch but it does seem to be the only one that he can manage to keep!

December 20, 2006 It was weird. I was looking through my flyers today. Hey, a girl has to save a buck somehow! Anyway as I was looking a few items popped out at me. One of them was those Sherif's cakes that you make and in the center there ends up being a pudding. They are cheap but as a kid they were a huge treat that I only remember my grandmother making. Before Liam was diagnosed those same packages brought me a twinge of nostalgia and I had purchased some. When Liam came home from the hospital I thought I would never make them again. All I could see was a life of sugar free gelatin, soda crackers, and low carb items.

Now I feed him pretty well whatever he wants and the amount of food that he wants. I love carb counting!! Figuring out his carb to insulin ratio was work but it made life on MDI and on a pump so much easier. Now of course we are more closely looking at the fat content of every item we cook but that doesn't hurt any of us. Thankfully Liam is slowly getting used to it to. In the grocery store he found an item that he wanted for his lunch. I said no because of the high fat content. He dug around until he came across something similar with a much lower fat content. He was so proud of himself and of course I bought the lower fat item. We just might win this battle yet :-)

December 19, 2006 It had to happen eventually but it really could have waited a few more years. We are now at the point where testing before exams is a must. I am still blessed that the school is very accommodating and understand that when Liam is high he cannot process information. Yesterday Liam had an exam that we studied for over a week for. He had a study guide to work from and "should" have done quite well. I am still terrified for him to find out what will happen. For this test his teacher asked ahead of time what his bg levels had been like that morning before school. He told her honestly that he had been running high. She didn't give them the test. She waited until his bg level had come down to a reasonable level and then the class did the test. I was so happy that she was so accommodating. You feel like you are putting the teacher out but its your child's life and their education. Liam has some lofty goals. His diabetes will not stop him from achieving his goals.

December 16, 2006 I must be getting lax, complacent or just a little brain dead. Last night I let Liam run in the 4s (70s) all night long. I did give him the occasional glucose tablet to bring him up but I didn't fuss when he was 4.4 (80). I just went back to sleep for another hour. No biggie! What the heck is that??? I used to freak at these points. Basals would have to be reduced today. I wouldn't be able to sleep! Now my big concern was the fact that his arm looked like he had chicken pox because I had put so many lance marks trying to get enough blood for his meter to work. I was also frustrated by the fact that strips do not "suck" when you want to go to sleep. At those times, you could have blood flowing all over the sheets and the meter will not register! But the lower readings all night? No big deal! I'm starting to scare myself!

December 15, 2006 The cure. Magical two words. Words my son lives for. When he got his pump he was scared that would mean that he wouldn't be able to be cured when it came out. I wish I had his optimism. People are very excited once again by recent research that offer more clues about diabetes in mice. I am happy for their excitement. I am grateful for the research and the people working to truly understand what is going on. I cannot say that I am one of the people who jump on the cure in my lifetime bandwagon. I don't see it. I pray that I am wrong and Liam is right. I pray that one day he will be trading in his pump for his cure but I don't know if my life will be quite that long. In the meantime, I WILL be very optimistic about the incredible treatment options that are out there. Even since Liam was first diagnosed, the changes in therapy options, testing methods, and CGMS have changed dramatically. It is wonderful. I will pin my hopes on those advances and work to help to ensure that everyone lives to enjoy those advances.

December 14, 2006 Today its a very good thing that I live alone and my children are in school when I opened my mail. My tough chick image would be destroyed as I cried and cried with each item I opened. First came the Christmas card (always my favorites!). Inside was a picture of a beautiful family and a brave little girl who has diabetes. The comment inside thanked me for being there but what she didn't realize and many of you probably don't is that you are all there for me time and time again. Whenever I get down or wonder what am I doing? Someone sends me an email. They thank me for my work, for my site, or for my help. They put my life back in focus and they have no idea how much they have just given me.

Then came two family parcels. The first simply spoilt me and filled with items for my boys and I to make more holiday memories with. The second also had family treats as well as medical items that I need for Liam. Tegaderm bandages that I don't have to buy are a wonderful Christmas gift in this house!

So thank you to everyone who supports me throughout the year. Thank you to those who let me know I make a difference just when I wonder if any of it is really having an impact. Thank you for bringing me to tears and for touching my heart every day!

December 13, 2006 Today I received a link to a news story that just boggles my mind. It states that sex change operations were covered by many provinces at one point. In fact they still are by at least Alberta, Saskatchewan, Manitoba, Quebec and Newfoundland. These are the same provinces that claim they cannot afford to pay for insulin pumps. Some of these provinces also will not put the best insulins on their formulary because they are not cost effective.

I understand the psychological needs of those who wish to have a sex change operation. I understand that it is a vigorous and difficult process. I understand that they feel they are trapped in the wrong body. What I don't understand is that they can live without the operation. Yes, they may encounter a lot of psychological abuse and have problems but they can live on the most fundamental level.

A person with diabetes cannot live and will not live long without the proper care. They need to test. They need to inject the proper insulin or use a pump in order to be functioning members of society. Without these tools their bodies will shut down. They will be a further drain on the health care system and take up valuable land in the form of graves.

I just find the argument enlightening and empowering to say the least. Feel free to check it out for yourself....

http://ca.news.yahoo.com/s/capress/061213/health/health_ont_sex_change

December 12, 2006

Dear Santa;

I have done my best all year. I have worked hard to see that my children have everything that they need. I have tried to keep Liam in the best of health. I have worked to try to ensure that Brandon isn't left out or deprived in any way because of the time and money spent on Liam's diabetes care. I have tried to continue to help others in every way I can. I have worked hard all year to try and better the lives of those living with diabetes and their families.

Its tiring work Santa and as much as I really want a nice vacation by the beach with a lovely cabana boy to do my bidding that would only be a Band-Aid. Nothing would change. Santa, what I really want is a cure. I know--ask for world peace its easier! Santa, I will ask that you never let that dream die in Liam. He believes in a cure. Please never allow him to let go of that dream.

I am willing to settle for less Santa. My list for this Christmas is simple...

1. Proper access to adequate health care for everyone living with diabetes.

2. The financial assistance to be able to afford proper care, adequate testing of blood glucose and access to the best possible treatment options.

3. Protection for our children with diabetes in schools. Please Santa, help me to get people and educators to understand why its so important for little ones to be supervised when they test, eat and inject. Help me to get them to understand that a child who is too high or low when taking a test cannot function properly because their brains just aren't working.

4. Equal access to insurance for people living with diabetes. We know that people with diabetes are high risk but can't they at least have a higher risk insurance policy? Please Santa, can you help them to no longer be denied assistance and insurance if they are working so hard to keep themselves healthy?

Thank you Santa for all the gifts you have provided. Merry Christmas and love to all!

Barb

December 10, 2006 The joys of children! Yesterday was the low fat meltdown. Today he is singing his praises at the low fat food choices he made at the grocery store AFTER the "I can't eat anything episode".

The joys of diabetes? Well, he was high and then higher for most of last night before dropping to a lovely 3.2. Thank heavens for our new pup! She decided that I was sleeping WAY too late (it was all of 7:30am on a Sunday) and whined until I got up. Of course if I was getting up to let her up, I had to test Liam at the same time. After seeing nothing but numbers in the teens, I was shocked to see a low! Boy was I happy to know that little pup had to use the facilities! The rest of the day remained okay but now we are back to highs! A new site (the old one was full of blood! How did we miss that???) and now we are looking at a 23 (400+). My nerves!!! I really have to get to work on that letter to Santa!

December 9, 2006 Melt down! We went shopping today. Because of the time of day, we decided to take a break and have some lunch. Liam chose the location and so the nightmare began. Foolishly I guess, I had mentioned the fact that he had had a high fat meal when he was away from home and he knew better. I was informed that he asks for this meal. I said that he can't do that any more. When we got to the restaurant of choice, he decided that nothing suited him. He didn't want to worry about fat. By the time he had placed his order he was in tears. My heart broke. He was right I told him, he shouldn't be worried about cholesterol at 9 but that was the way things are. I said that I had ordered the same meal. That eating a low fat meal was good for all of us! His attitude did not improve, in fact he got down right rude.

Eventually he calmed down. I made him apologize and we began to think of the things he could have. Low fat baking at home is not a problem because I always do it. Santa had come into the restaurant and was giving away treats--baked goods. I allowed him to have them as they were the lesser of a lot of evils. He decided during his attitude that he didn't want it. He couldn't have it and that was that. The tone eventually changed as the tears slowly dried up. Once again my heart broke. I hate this disease!!! Adults watch their cholesterol. We teach our children to eat healthy--my kids do love their fresh fruit and healthy alternatives. Life just hasn't always lent itself to meals like that on a regular basis lately. Hopefully everyone will soon begin to get on the same page and we can fix this.

Where is my letter to Santa? I think I know what I truly want for Christmas.

December 8, 2006 I have created a monster!! Who knew? I was the queen of meter collection for years. Every new meter I had. I knew all the reps and they ensured that I got to try out their products. Well, my status must be slipping because they rarely send me anything any more. I still am on lists with various companies however so in the past week I have received another Precision (so I don't accidentally switch from mmol to mgdl) and a new meter from Roche. Liam was over the moon. A new toy!! He had that meter pulled out, loaded and lancet ready to go before his coat was even put away! He was all impressed with the inner workings and said that he would be taking the new meter to school. I asked why??? We have the Cozmonitor now. There is no reason to take any other meter (okay I do when going any distance just in case things die but generally...). My oldest son just looked at me and shook his head. He told me that I had created that child and I should understand why he needs another meter. He said that Liam had had over 20 meters in his life so how could I expect him to go down to just one?? This was a child that was used to a new meter every few months. What was I trying to do to the kid?? Silly me!

December 6, 2006 I ran into Liam's teacher today. He did very poorly on his math test AGAIN! He had studied for twice as long as he was required. He knew the information quite well. I was expecting to see a much better result. His bg level was high at the time of the test. He made stupid errors. I can't take this any more. I have to find a way to protect him. We are both getting discouraged as the tests don't truly reflect what he knows. His teacher was very accommodating. We are going to work together to find a solution but she is only in that position until the end of the month. What happens next? I have contacted the principal. Between the three of us, I want something in place to protect my son from being penalized by his illness. I really hate this disease!

I have been fighting recently for children with learning disabilities. I understand how the parents feel in some small way. You work so hard. Your child works so hard and then the result is so poor. You feel like you failed. You didn't. The problem is bigger than both of us but you still feel like you failed. You can only imagine the pain of your child. There just has to be a better way.

December 5, 2006 Its that time of year again when I begin shopping for my boys. I spoil them. Every year I say I won't and every year is the same. I won't say what I have bought them just in case but they aren't lacking. I now look at their gifts a little differently though. I think about how much money is spent and then I translate. Oh, they each could have had a vial of insulin for that item. That item was over 100 test strips! That item was an infusion set. That item was a cartridge. That item was the down payment on a pump! I appreciate the fact that I am blessed. I am able to buy these things for my children without Liam going without

December 4, 2006 What goes down must come back up! OY! I just adjusted one basal rate because Liam was running low and now? He is running high at a different time. No rest. No break. Just a fight. Its been a very full day and it seems that nothing goes on without a fight. Why can't things be simple? Someone said because then it wouldn't be life. Its one of those days when you want to crawl under the covers and not come out to play but for some stupid reason I keep lifting the blankets! Maybe that's where my kids get it from. They were always nosy and had to know what was going on. Now I'm an adult and always have to be there to fight for this and that no matter what. C'est la vie I guess! On the upside, it takes very little to amuse me because my brain is slowly being worn away by other issues.

My latest discovery is zipper pulls. Yep, small things amuse small minds!! I saw a woman who had one on her purse for breast cancer. I thought that was pretty cool so last night when I should have been sleeping (especially if I had realized Liam would be high and up a good portion of the night) I was trying to find out more about "zipper pulls". Well, I found them. I'm in love and have a few placed in the online store if anyone else is looking for small gifts or just is easily amused :-) They look great on men and women's items don't you think....

December 3, 2006 I was recently sent new tattoos to add to my infamous "tattoo page". I found this one poignant and sad for more than one reason. This was done in memory of their daughter. She didn't have diabetes--Mom does. Mom's diabetes was a contributing factor in little Savannah's death. We think of diabetes and we know the complications. We know how important testing, carb counting, injecting, etc is. We know how we work to protect our loved ones.

As a parent, I am always interested in speaking with adults living with diabetes-especially those diagnosed as children. I know what its like to look at things from this side but I don't truly "live" with the disease. I am only trying to protect my child. I know the devastation of losing a child. I can imagine the added pain of losing a child because of your diabetes.

We need a cure--for everyone!

December 1, 2006 Last night I went to test Liam before I went to bed. He hid his hands. He moved his arms around so there was no getting to him. He also left a lovely bare leg showing. I looked at that leg and thought--AST is more than just the forearm! So that was good enough for me, I lanced his leg. The reading looked close to the last one. I was ecstatic--another spot to test on! My ecstasy was short lived. The next test, I tried the same thing. I got an "ouch" in his sleep and then he proceeded to wipe off the blood!! Dang! Night testing can be a real pain when the sleeping person will not cooperate! I mean I just want to stab him and rob him of his blood. Why would someone have a problem with that???

November 29, 2006 Where has the month gone and why are there not more hours in a day?? I have managed to catch a bit of a cold but don't have time to worry about it. There is always this or that to be caught up on. Liam's numbers are still great! This morning at breakfast he even commented on it. "Mom, how come I'm always in range these days??" I said because we are lucky and we will take it for as long as we can! I must say that I was impressed. Maybe he just isn't growing as much right now but that's not a bad thing either--I don't have to worry about him growing out of all of his clothes! Unlike his brother, he doesn't wear everything 7 sizes too big.

I received a wonderful bit of news this afternoon--probably not so great for some but wonderful for children living in the province of Newfoundland and Labrador. The Diabetes Hope Foundation will be expanding their scholarship program to this province. It is such a wonderful organization and I am so proud that I could be the catalyst to bring it here.

November 28, 2006 The moral of the story...even when you think you have everything backed up, you probably don't!! I have had to restore the entire website for the past month as all the data was somehow lost despite backing it all up 12 ways to Sunday!! Now I'm just behind keeping you all entertained with my ever so exciting life and more importantly, getting those research links up to date. I do apologize again!

On the upside, Liam's numbers remain great. His math skills are getting sharper despite the fact that he often "cheats" and uses his meal maker function on his pump rather than actually add the carbs in his head! He is getting better at knowing how many carbs are in each item. He did use to know a lot of this stuff but I guess as I have been busy with other things, I just took over rather than teaching. I forgot that to teach him is to empower him. Now he just has to develop the confidence in what he knows without becoming overly confident.

November 25, 2006. The following was from someone who decided to set me straight and dared me to post his kick in my butt. First let me say thank you to him! I needed it! Second--I rarely back down from any challenge and I didn't plan to start now...even if my computer ate the first version. Here is my official kick!

Put this in your blog! The editor in chief of this site has quit a Provincial Advocacy Group where she can make a real difference. She let some small minded individuals get the better of her. This from a woman who faces adversity every night in the challenge of keeping her diabetic son healthy. She, who has taken on bureaucrats from all levels of government and the particularly scary ones with Revenue Canada. That's right Barbra , I'm talking about you ! Some people call me an advocate and worse things but I have only dreamed about making the type of impact you have made in diabetes advocacy. I know you are going to continue your work , however , your loss from this committee is a loss for all of us afflicted by this disease. JM

November 23, 2006 Silly me, I have been basking once again in the fact that Liam has had some great readings. Highs have been easily accounted for. Life has been perfect. I have even stepped out with family and friends and had a bit of a life. Tonight I pay for it! I hate lows that don't respond. I can take the first low, but the second after treatment begins to scare me. When this happens at night? I want my teddy bear! I hate it! I hate it! I hate it!!

I am exhausted for a variety of reasons--I know who isn't. I wanted to go to bed at a decent time and get in a few hours before I begin waking again. I tested Liam and he was low. I gave him juice as he slept. I waited. I checked him again. He hadn't budged! I freaked! I want to sleep. I am terrified to sleep! I gave him more juice. I lowered his basals. I will now end up sending him high! Why do we have to play a game that we just can't win???

WRONG attitude girlfriend! We are winning--my child is alive! He will wake up in the morning and never know he was low. I am winning. He is a normal little boy in so many ways. Refocus and try to get some sleep at one point :-)

November 22, 2006 There has been a lot going on in my life for quite some time. As with all of us, I have spent the past little bit dwelling on the garbage--the things I can't change, the things I should change, the things I wish I could change. I woke up this morning and I wasn't where I expected to be on this day even a month ago. At first, I thought about slipping into that lovely shade of blue funk and then I looked a little closer. I saw two wonderful boys who are turning into incredible young men before my eyes. I saw that neither of them were dead. Neither of them were cruel. They both looked pretty perfect to me.

I then began to rethink my life. Some doors have closed but as a dear friend of mine tells me, "when someone closes a door, somewhere God opens a window." I began to see the true sunshine floating through that window. I truly needed to slow down a bit. I am involved in so many issues and events that my daily planner is full! I got a dog recently for myself. I thought she would help me to relax. Today she did. Okay, there is not a lot of relaxation in the housebreaking or the fact she needs to use the washroom at 4am after I tested Liam at 3am and she likes to get up at 6am and we don't need to be up until 7am, but she does make me stop. She's a baby. She loves to cuddle. She demands my attention and makes me stop just to sit with her.

We all need to do more of that. Diabetes takes up so much of our life. It can be frustrating and depressing. There are so many battles to fight both with the disease, bureaucracy and the government. It can take its toll whether you are living with diabetes or you have a loved one who has it. Take time for you. Without you where will the rest of us be??

November 21, 2006 I have decided to up things a little around here :-) I will be creating a more proactive Diabetes Advocacy section in Newfoundland and Labrador. I think most of our work will be done via email so that everyone can be included. If you would like to be a part of this group and see real change in this province, please contact us and we will add you to our list. Please don't assume that we already have your address on file as our recent computer problems led to the demise of our address book!!

November 19, 2006 Yesterday I did the mall awareness thing again. We didn't see as much traffic as in previous years once again but this week we made a small change. We noted that we were collecting donations for the charity I was representing. That worked a bit better. For whatever reason, when people walk through our mall, if you aren't selling something, they aren't interested!

The sign and letting people know they could donate made a difference. People noted that they waited from someone to come to their door but no one arrived. I told them to donate now :-) Its hard to find volunteers for anything let alone canvassing but that's another story.

I had a friend who came to the booth. We have known each other for quite a few years. She was my neighbor when Liam was born. She has always been very supportive and is just an incredibly upbeat individual. She gave me some money and told me "For the baby". Around here, the youngest child is referred to as the baby no matter how old he/she gets. I asked if she wanted a receipt. She said no. Simply that this was for him. I was glad I was alone and she moved on to do her own shopping and deal with her "baby" because I wanted to cry.

I had watched people go by all afternoon. I had thought how lucky some were. How unlucky others were. I just wanted them all to "get it". I wanted them to understand the sleepless nights, the fights with homework because of blood glucose and nothing more. I wanted them to understand the fear in letting your child go to school, to a friend's or on a bike ride. I wanted them to understand the terror of worrying about heart disease and so much more...and then came this lady. She may not completely "get it" but she gets it enough that she will do as much as she can to support anything that might one day "help the baby". I guess we are getting through one person at a time. My fortune cookie at supper last night said, "Rome wasn't built in a day. Be patient." I guess that is why--but boy am I terrible at patience!!!

November 18, 2006 How do we get others to understand? How do we get them to help? I was trying to do homework with Liam tonight. I threatened to send him to bed 4 times. He was driving me crazy! He's work was sloppy. He wasn't paying attention. His bg level was 15. I wanted to cry. He did cry. It was torture. The same work when he came down was a piece of cake. He was interested and he understood immediately!

How do you convey this to teachers? How do you get them to understand? To not count these times against them? How do you deal with this when you are in university? What professor is going to care? How do you deal with this at work? Your blood glucose levels are out of whack and you can't concentrate or even see properly. How do we get people to understand how real this is? How frustrating it is for those living it let alone those who are just on the fringe? I wish I could figure out the answer because the questions are killing me.

November 17, 2006 I am still not happy. This low fat thing is crazy! Liam is looking at food and every mouthful he is analyzing for fat content. To take him out for a meal is becoming more and more difficult. Perhaps if I lived near a larger center the options would be greater but right now the poor child is living off light sandwiches! I won't allow him any high fat treats when he is out because they are still getting the hang of what constitutes low fat when they visit their father. This is sick! This is sad. I hate diabetes! I hate that I am worried about heart disease in my 9 year old!

November 15, 2006. Finished!!! For the past two days I have been emailing each MP in Parliament and telling them about diabetes, etc. Now that I have resigned from one of the too many committees I was on, I no longer have to worry about them wrongly construing that I was trying to represent their position. Each MP received an email about diabetes and the reason behind the tattoo I received. Who knew that there were so many MPs!!

So what is next? I wish I knew. Maybe I need a break? Can't really see it. Other issues have come up and there are other groups that I am working with. Its funny, someone suggested that I not let my resignation dampen my passion for this disease. How in the world can I do that? Each day I still wake up to my child's face. Each day I still test, inject and pray that he will be healthy. Each day I still worry about how I will afford his next pump or pump supplies. Each day I worry about how he will afford his supplies when he is on his own. Each day I worry about all of those people who can't take care of themselves properly. Diminished passion by people who don't live here? Not likely. Disappointed to not finish what I started? Of course but hey, we will finish something even bigger right???

November 14, 2006 I really shouldn't brag about good readings. You know that you jinx yourself!! Oh did I ever! Liam was 16 (290) overnight. He was just over 14 (252) before a site change. Dang! Just can't win with this disease but that's the fun part right??? Something like that anyway!

We are still working on Liam learning his carb counts. I went over his meal and asked him how much everything was. He failed miserably! His brother said, "You've been doing this for like seven years! How can you get it wrong?". His response, "Mom did it all in her head. I just pushed the buttons." Well, times are a changin' and my baby is growing up. Scary but he really is. I can see it--in his actions, his height. Its time to teach him properly now so that hopefully some of it will carry with him later when I can't deny that he isn't my small baby any more.

November 13, 2006 Before I begin today's rant, I want to say a very special thank you for those who have sent emails and calls of support to me. Some of you have heard that there has been a bit of a fuss made about my tattoo. I won't claim to understand it but I have distanced myself from those who found it offensive and disturbing. I am instead focusing on things like a policy for children with Diabetes living in Nova Scotia and of course Liam's diet and care....

This low fat thing is really starting to work for me. I know its not everything. The diabetes gods are smiling on me in that a site hasn't gone bad, there has been no air, and shock of shocks--Liam has bolused when he is suppose to! Seriously, the low fat thing has meant that his numbers are much more predictable and steady. I could see the difference when he went for his weekly high fat treat. The numbers were not pretty.

The other thing that all of this is doing is that it is making me teach Liam. He's my baby. In many cases I probably have babied him. As I told my doctor the other day--a nine year old should NOT have to know how to read a label for low fat items but that is Liam's reality. It sucks but what can you do? I can only empower him so that is what I am doing. He is learning to total his carbs. He is learning what is low fat. It will become second nature and it will be one less thing for me to completely freak out over. I won't say one less thing to worry about--if you know me, you know I LIVE to worry! I can worry about anything and everything--real or imagined, in the present or twenty years down the road. I'm not fussy!

November 12, 2006 Due to recent events, my mind has been spinning. I keep trying to settle it and focus but off it goes again. My mind in that mode can be a dangerous thing!! Some might say that my thinking is a dangerous thing but that's another matter!

How do I improve Diabetes Advocacy? How do I make it bigger? Better? Impact more people? Create more real change?? These are very serious questions and I honestly welcome your suggestions.

I need to make some decisions on the direction Diabetes Advocacy should take. You see, I have a problem. I am motivated by passion. I am a true Taurus--I plow in and take hold of the reigns and then look around to see what the heck I am doing! For those who have read a Tarot deck, I am the Chariot in many respects. In either way, planning is not always my strength. I keep trying to go there but I get sidetracked by another issue. You see I could be spending my weekend planning, thinking, researching funding, etc but I don't have time for that. I have a letter to write to the Minister of Education in Nova Scotia. They want to know why they need a policy for children with Diabetes in their schools and are very open to real suggestions.

Tomorrow I will get down to brass tacks :-)

November 11, 2006 Remembrance Day for those of us in Canada. We remember those who have fought and those who continue to fight.

On a total different front, yesterday was the first night that Liam went to a restaurant and we had to be very careful to watch for fats. It seriously limited his menu choices and we were in a restaurant not a fast food place! The positive thing was that he stayed stable all night. Fat really is evil-- too bad its everywhere!

November 10, 2006 As is always the case, I had some response to my negative reaction to a recent diabetes ad campaign. I was accused of being too focused on children and not recognizing that this campaign was important for adults. I do actually agree with these people. It is vital that the message gets out there. People with diabetes are more likely to die of heart disease. I still stand behind my position that there is a time and place for everything--a child's movie is neither the time nor the place. I have also forwarded to this organization the comments of those people who agreed with their campaign. I am not the only opinion that counts :-)

On a more positive note, I was proud to read that Diabetes Advocacy was mentioned in the Nova Scotia House of Assembly in respects to children with diabetes in schools. We will be drafting a letter to the Minister and the opposition over the weekend to further explain and support our case of the need for a Provincial Policy. Please join us in this and send your letter of support if you live in Nova Scotia. Details can be found on our home page.

November 9, 2006 I don't know if everyone has had a chance to see some of the November awareness campaigns out there but there is one organization in particular who has an extremely blunt and basically brutal ad campaign. It shows very stark pictures and discusses the chances of you dying from heart disease if you have diabetes. While these are the facts they are not something I would want my child to see. Imagine my surprise when I found out that these same ads are being run in front of children's movies! I send a letter out immediately to the organization involved.

Why do we have so many battles? and even with those groups that are suppose to help us?? I really need to win a few million dollars or find a rich sponsor who would help Diabetes Advocacy to truly become an option to those groups who seem more concerned with the politics of their organization than the lives of those living with the disease. Don't get me wrong...many of these groups are making inroads with governments and more importantly are funding great research but we need more! We are living with diabetes NOW not living with a cure. Maybe I am fighting too much. Are we getting anywhere? Are we making a real difference? Boy I hope so because some reward would truly be appreciated about now!

November 8, 2006 Liam went to his clinic appointment. The good news? His A1c dropped a lot!! I was so relieved! With site problems and bolusing issues, there were a lot of prayers said on the way to that appointment! The bad news--his cholesterol is up. My son is 9 years old and he has to be on a low cholesterol diet! What sick world is this?? He doesn't eat much in the line of fatty foods but there are now more than one cooking style in his life.

My decision? I now have to begin teaching in earnest. He may only be 9 but he HAS to learn what carbs are. He has to learn to read ALL labels. He has to learn what amount of fat is acceptable. But he is only 9!!! But I want him to live until he is 90. I still hate this disease!!! You shouldn't know your cholesterol level at 9!!!

I need a vacation!

November 7, 2006 And so the questions continue! When I went to see Liam's D team today, the first statement was "I want to see it". They were so very impressed with my tattoo. I got home and had an email saying, you did what??? I was commended but the person was shocked. Oh well, as long as it gets noticed...for the reason intended. I have also received emails from people thanking me, commending my passion, and for making them cry. What can we say? This disease has made me cry every single night for over a week. If more would cry with us, maybe we could get something done. I will keep trying just keep that pot of tea warm to calm me now and then!

November 5, 2006 Tonight I just want to sit and cry! You work so hard to keep your child healthy and safe. You do everything you can to micromanage but not everyone cares as much and you can't keep your child 24/7. Granted we need a break and they need other people in their lives but when you have said the same thing again and again and get nowhere?? What do you do? How do you beat it into their heads? You can't so what happens? You take it out on the child. They are children!!! Its not their responsibility but its like yelling at them when you are relieved to find them after losing them in a mall.

Right now I just want to sit down and cry but I can't. My boys are still up and they don't need this crap. I don't need this crap! Liam bolused the wrong amount at school. They are to verify what he puts in his pump. They didn't.

They will be in bed soon. I will cry. Nothing will change but maybe I will feel a little better. Can't the battles end? I seem to have to fight absolutely everything! Its not right but someone has to do it--but then again why should anyone have to do it????????

November 4, 2006 Well my family is still in shock and asking if its a temporary tattoo! I did a letter to everyone I knew (see our new Tattoo page) I invited them to check out my tattoo :-)

Liam was fine last night and then was 21.3 by 5am! I couldn't believe it. I corrected and by 8 am he had dropped to....21.3! WTF???? I gave him his insulin via syringe but haven't heard from him all day. I hope that's a good sign but its not one that I trust. He had fresh insulin in the cartridge. I can't see there being air. Oh I am so stressed and frustrated right now! I am sick of this!!

I sat in an awareness booth today and for the first time had more people just passing it off saying "oh yeah, I know all about that. We are just too sweet". I wanted to scream! Actually I came home and did scream--my computer refusing to work didn't help the situation but for 21 to know it alls to a computer that needs to be replaced? Barb has gone over the edge!! I think I will go and find a drink for the evening. Then I can complain about the headache tomorrow over a lovely chocolate cake baked just for me...okay its good to be a bit spoilt!

November 3, 2006 I know, I am a little late in my report. There is a reason for that--I was wiped! There was also a reason that my tattoo appointment was cancelled in October--this guy was soooooo much better!!! He totally changed my design and gave me so much more. Literally as well as figuratively!! The broken heart is gone and both my boys now have my heart. I liked that. The coloring is soft. Surprisingly, I liked that too! The grey ribbon is there for Liam as is his blood.

Now the pain part--there really was none! I almost fell asleep more than once. I arrived at 3:30pm and didn't get out of there until after 6pm. Part of that time was him designing and the rest was being worked on. At the end some parts were a little tender but I really didn't feel it at some points! Now I am ready to meet politicians in only strapless outfits!

My children were shocked. My oldest couldn't believe I would ever do something like this. Liam just said, "she's tough just like her son!". That almost brought me to tears! What I did doesn't compare to what he goes through on a daily basis.

Well, here it is... my tattoo.

November 1, 2006 Diabetes Awareness Month is once again upon us and what are you doing??? I know that a lot of you are joining us by having a tattoo done to raise diabetes awareness. Mine is scheduled for tomorrow!!!! I will give you all the gory details and even some pictures once its done!

I have also arranged for an information booth to be set up in our local mall. I will have a presence at a craft fair in another province. I will be contacting the media to discuss diabetes. I have recently been interviewed for a Globe and Mail article on children with diabetes in schools. I have shared our Faces of Diabetes campaign with another large newspaper but unsure where that will go. I am involved in a political awareness gathering--and can't wait to hear the comments when they see the tattoo on my shoulder as the evening progresses!

We also are looking to expand on our "Faces of Diabetes" Page as well as our new "Priceless" Campaign. Check them out and please, consider adding to them!

October 2006

October 31, 2006 Well adrenaline seems to have kept Liam nice and high this morning. Thankfully with some aggressive insulin and walking around trick or treating, he seems to be back in range this afternoon and evening. He also now has enough candy to make Mom a size 14 in no time flat! I will be good. I will be good!

Besides, I have my own adrenaline issues to deal with...the count down is on! I only have two more days until the big tattoo day! I am still excited. I am still nervous. I have called and confirmed my appointment. All is set. I am doing a lot of things that day to keep my mind occupied. I watched a couple seconds of Miami Ink. I can handle this! I am tough! Okay maybe not but its for a good cause and I can't wait to have people ask me about it and then be able to discuss diabetes! What a way to start November!!!

October 30, 2006 I know the topic has been beaten to death but hey, what's one more time. We have all seen how incredibly the breast cancer people have done their awareness campaigns. You see that pink ribbon attached to tv shows, yogurt, candy, motel rooms and more. Its incredible! We would love to see diabetes get half the attention.

I recently was told that a friend of mine found a lump in her breast. She is close to my own age and the thought was terrifying. I now am personally touched by this disease. I then took a step back and thought about it. I can't remember the numbers that they use when discussing breast cancer. There is a figure stating how many people in your own life will be touch by this disease. Its a staggering thing and personalizes the disease.

I then thought about diabetes. I don't want either disease. I don't want my friends and family to deal with any of those terrible diseases. How many of us know someone with diabetes? Okay my numbers are probably terribly skewed by the work that I do but still everyone knows someone. Is this the angle that works? I honestly don't know. I don't want to see pain and suffering period.

I want everyone to understand how terrifying both of these diseases are. I just want us all to have a break from these worries.

October 29, 2006 We finally got our water back so I have been cleaning and doing all the laundry that piled up over 3 days. The joys of living in a rural community. I swept the floor before washing it and found 3 test strips. I washed clothes and found 5 in the washing machine. I found 1 near the dryer. I changed my bed and found 8 on my nightside stand. We have a bottle for the dead strips and still they find their way into everything!! Its insanity I tell you!

October 27, 2006 So what gives? Liam fasted all last night. His levels were incredible! He was between 5.9(106) and 6.1 (110) from 10pm until after 10 the next morning!! My little mind was blown. How awesome! As he was walking to the hospital to go to the lab, he told me that he had already been poked enough this week and didn't feel the need to have his blood work done. He had had a site change and an immunization shot. Add to that the fact that he would soon have to have his flu shot and what the heck was he doing here????

When we got there the theatrics began. He was being tortured. They used a butterfly needle. He had Emla on. He held my hand. They had two of them to hold him down. He was just plain silly and I told him so. When I said that it was all over and his blood was pouring into the tubes, he flatly informed me that I was not helping the situation!

October 26, 2006 Fasting blood work tomorrow. We have only been doing this for over 6 1/2 years but with each year it gets worse. Tonight was so painful. He wanted juice, food, everything. He cried. He was frustrated. I was frustrated. He started the day high but thankfully he was fine by the evening. No lows please!! My nerves! I so hate this disease. Why does a 9 year old have to worry about his cholesterol level? Because he has diabetes. I somehow gave my baby this and now I have to put up with the crap that goes along with it. I will. I will be strong for him. I will reward him tomorrow but tonight? I will just hate it with all of my being!

October 25, 2006 Bg levels couldn't stay beautiful forever right? I was riding high because besides providing a writer for the Globe and Mail parents of children with diabetes to speak with, the guy called me and wanted my take on this. Add to that the fact that he took down my web address and hopefully will actually note it in the Globe and Mail, you know I was flyin' pretty high! I mean free advertising in the Globe and Mail! Add to that the fact that Liam had had perfect numbers for almost 48 hours! Oh yeah! We were doin' the happy dance baby!! But all good things must come to an end.

I stopped by the school today to drop off food and do parent things--okay not quite normal parent things because I have a big mouth and I nabbed a school official and had a "chat" about a few issues but I digress....So I am filling fridges and deep freezes and I run into Liam's teacher. She tells me that Liam was high for most of the day and he was out of it by the end of the day. Dang!!! What gives? Why me? Why him? Crap! What did I screw up now? I didn't have a clue...until tonight! I was clearing off my table. Its a great place were all of our daily papers simply pile up until I can't take it any more (I never said I was organized!). On the top was this lovely yellow sheet. Liam had a vaccination yesterday! No wonder the kid was high! It was a reaction. I am normally so on top of that stuff! Pass the loser parent award!

October 24, 2006 I am beginning to wonder if it means you have "made it" when you keep finding your site quoted and plagiarized by other people? My school policy shows up in places I never knew it existed. Other details researched on my site are showing up in letters to government officials. I guess I am suppose to be flattered. I am certainly intrigued! My oldest son said I should copywrite my work. This is the internet. Does that sort of stuff really matter? I just don't know. The idea is to get information out there. I think I will simply focus on that and obviously a lot more people are checking the site out. That works for me!

October 23, 2006 Change the pump. Change the insulin. Change the site (it fell out while he was in bed of course!) Change the basal rate--and still see a 19 (345). No wonder I am exhausted! I am testing every two hours because heck I'm awake anyway and still no perfection. Perfection? What is that? Four hours used to be good. Now I would love to see a day of numbers under 10 (180) is that too much to ask? It would appear that way! Just in case, I changed his basal rates...again! I don't really need sleep right? No just a few million dollars, a cabana boy to do my bidding, a nurse to do the night shift, a chef, and a pool to work out my frustrations. Yep, that would work just fine!

October 21, 2006 Its A1c blood draw time. I know it will be a nightmare! No matter what lately something has messed with great numbers. Actually good numbers seem to be the exception rather than the rule. Liam has decided to screw up his bolusing more often than not lately. His father called to tell me that he thought Liam had forgotten to bolus his breakfast the other day. Yep! And gee he was sky high in school that morning! The week before (Liam tells me days later) he bolused under "night snack" (a 1:40 ratio) rather than "breakfast" (1:15). Funny but he was high then too!

Then there is the air in tubing, sites failing, Mom failing. Oh I just don't want to see his A1c continue to rise!!! Why do I have to feel like such a failure when I see this number? We had such great A1c's before but now? Too much going on in life and no matter how hard I work, its not enough. I really hate this stuff!!

October 19, 2006 What a disappointment! I went to my appointment yesterday and they were closed! They had called my house but I was a few hours away and didn't get the call. They left me a number to rebook. I did--with another place! After I had heard of someone who had troubles with their tattoo after going there. I also found out that there was a local artist who was very good, clean and when I called to book--takes 3 months to get into! I must have been meant to get my tattoo done in November though because she squeezed me in for the 2nd of November! So back to waiting..

October 18, 2006 Oh my gosh!!! Its the day! Am I worried? Am I nervous? I haven't had time to be yet! Liam's pump arrived yesterday evening. It took approximately 25 hours to get. The irony? It was only one province away this time and took longer to get here than when it was up in Ontario :-) Oh well, in either case Liam was hooked back up to his pump in excellent time! I have also been advised that all the problems that I experienced have now been corrected.

Okay so now I can start getting a little nervous about the tattoo right? All week I have had double meetings, and all sorts of events to plan--have I mentioned lately that I really need a raise? Today is for me. It will be an all day affair but the place that I am having my tattoo done at is about 2 hours away. That is why I am having it done this month rather than in November. I didn't want to chance the weather next month. In November I will be much more public about what I have done. By then, some of the others will also have had their tattoos done and my boys will probably have seen it! They don't know that I am having this done. Only those who read this blog really know what is happening today! Who knew that I could keep a secret so well :-)

October 17, 2006 I need a vacation! I am now almost tired enough not to worry or even think about my big day tomorrow :-) Liam's pump officially died last night during the beginning of a teleconference! I was on the phone and he came in with his pump screaming again. I had already been in contact with two VPs who deal with the Cozmo pump that morning complaining about the terrible service on the weekend and had a clinical person call me back about my problems before noon. I thought all was fine.

Wrong! I played with the battery cap and went back to my call. He came back in 5 minutes later. Pump was screaming again! I had to leave my call and call the Cozmo people. This time the service was awesome! The guy knew that I was to call the US line! He told me right away that the motor was screwed on Liam's pump! He said he would begin the process of getting Liam a pump right away and someone would call me.

I went back to my conference call but was a little distracted as I calculated bolus and basal amounts and injected Liam for his meal. Every four hours I injected his missing basal. It was working perfectly--all numbers around 6 (108). Life was great! Until 4:30am. Liam woke up to use the washroom. I knew he was high. Yep! 20 (360). Dang! We injected, added a correction and back to sleep for a few more hours. This morning he woke up at 9 (160). I can live with that. I gave him his basal for the next four hours with his breakfast. I will have to go to school to do the same thing at lunch time. We did recess snack with all no carb foods.

I'll be saying a few prayers today as I have another teleconference scheduled. I am hoping there are no problems during that time! I love his pump but I must admit that we are doing pretty good at this every four hour thing!

October 16, 2006 I know, I so need a life but what can I do right? I was talking to my mother last night and she said "George Canyon uses a MiniMed pump". Now first is the fact that I was impressed my mom was on top of the fact he had a MiniMed pump (she's not around me every day to be up on all the "lingo"). Next I thought is was so cool that there is another celebrity out there with Type 1 diabetes who is actually talking about it! He was on a talk show when she saw him. I went to his website today and sure enough he has a section waiting to discuss his diabetes!

I probably won't get far but I emailed his PR people and asked them to see if he would do a section for the Faces of Diabetes page (for those who haven't contributed, we are always looking for your stories!!). I also emailed the web people and said "Thank you!!" for their plans to design a diabetes page on their website. The more promotion the better!!!

October 15, 2006 Frustration!! Oh my heavens! Liam's pump started behaving badly. Thankfully his father was dealing with that and not me but they did feel the need to call me bright and early to tell me about it. I took off the Cozmonitor thinking that might be the problem. I tried the Canadian help line but couldn't get through. It was nothing but an electronic nightmare! Press this button, press that button and never talk to anyone! OY!

There was a problem with the battery cap to the Cozmonitor according to the US support people. I was to call the Canadian line on Monday. Oh the joys! At least the pump is no longer screaming at me but we are once again Cozmonitor-less. Just when I was having fun!

October 14, 2006 I had an interesting discussion the other day with a woman regarding insurance. Its something I don't think of often. I probably don't have nearly enough on myself and never considered how it will be for Liam to get insurance later in his life. For me the concern is always strictly health insurance--let's get those strips covered and other supplies. For adults the reality is different.

This woman found it impossible to get mortgage insurance because of her diabetes. I quickly found out this was very common and that people with diabetes have had to become very resourceful in order to protect themselves and their loved ones. One friend has had to take out term life insurance so that should he die, his mortgage can be paid out of those monies. Obtaining the term insurance was not easy. It was full of stipulations and issues of itself.

There are just so many issues surrounding this disease and so many catch 22s. We fight so hard for things like recognition in schools and a tax break. We fight so hard to stay healthy. We want people to take diabetes seriously but we can't have them restrict the lives of people living with diabetes because people now assume that they are disabled. Oh what a tangled web we weave in trying to educated John Q Public!!

October 13, 2006 The countdown is on and I am both nervous and excited. Will I regret this? Nah! Its about awareness right? I know--what is she on about? Well, if you have looked at other parts of this site you would know that there are a group of people from all over North America who will be getting a tattoo over the next few months to represent either their own life with diabetes or the life of a loved one with diabetes. We considered an "official" tattoo design but decided that personal was best. Everyone has their own comfort level with how big, how ornate, etc. People are slowly coming up with their own designs and I am hoping that they will allow me to post and share what they have created once it is done. There are some great ones I have heard of so far.

So yes, I am joining the ranks. I originally wanted to do the phoenix I have posted on this site but it would end up being a little larger than I was comfortable with. It has a lot of significance to me but then there was the question of my "unknown child". That's how my oldest refers to himself :-) I needed to recognize him if I was going to recognize Liam. I have designed a heart that will be put on my shoulder next Wednesday afternoon. The reactions should be very interesting! Both my brother and sister have had tattoos for years but I am the "conservative, loud-mouth" child. I wouldn't do something like that--but its for a cause :-) I have researched the place that I am going and am confident in their skill level and most important--hygiene. Its ironic that my oldest son was watching a tv program on how popular Angelina Jolie has made tattoos and I said to him that I should run out and get one. He looked at me and said "yeah right Mom!" Won't he be surprised when he comes home next week from Dad's and sees mom's shoulder!!

October 12, 2006 Do you ever wonder if you will truly ever sleep again? I constantly wake up repeatedly through the night. If Liam is near by, I do a lot of testing. If he isn't then I spend a lot of that time looking at the clock and trying to decide if I should move out of my warm bed or not.

Last night was no different. Test him at 11. Get ready for bed. Read a bit. Its midnight. I could test again. I better test again. I had changed his carb to insulin ratio and his last reading was perfect--I never trust perfection. All is fine. He hasn't budged. I set my alarm for 3. Three hours sleep should be heaven! Nope. Awake in two hours. Okay. Test again. All is still perfect. Down right scary! Back to sleep I go and set my alarm to get up for the day. Wrong again. I wake at 5. Who wants to be up at 5? Its a good time to stoke up my wood stove so that its warm in here when I do want to get up. Okay so if I'm doing that I guess I had better test right? Besides that, nature is calling. Dang!

Up I get. Up the stairs I go and guess what? Perfection is gone and he is low! Good thing for mother nature's call! No juice. Shoot. Okay he can do tabs in his sleep now too. Give him his tabs and go back to bed. I know I only have 20 minutes because his pump will be beeping. I have a baby monitor in my room so I will hear it go off. Sure enough off it went! We are now at 6am but hey, he is in range. I can sleep for that one more hour but what would four or dare I say it...six solid hours of sleep really be like? I can only dream! Its been way too many years since that happened!

October 11, 2006 I think it was a success. I haven't had to do a school presentation on diabetes in years. Because we have such a small school, Liam has had the same classmates each year since kindergarten. This year things changed. He is now in a three grade classroom so I approached his teacher and asked if she felt they would be interested in a diabetes presentation. She jumped at the idea.

Thanks to some great parents, I figured out a presentation that I felt would appeal to 9-12 year olds. I did a science experiment! I have done one of those in a while. It is listed on the school presentations page, but basically it involved showing how ice/food cannot get into a sponge/cells without the help of hot water/insulin. I then should Liam's insulin cartridge and tubing and explained that this was how he received his insulin. I found some great cartoon pancreases and insulin "keys". We had questions afterwards and no one seemed particularly bored. I figured that was a bonus!

When the boys got home, my oldest asked how it went. I said to ask Liam. Liam said great so I guess I passed. The best thing for me? No nerves. I know why would I be nervous talking to such a small group of kids? Basically because I always do! I hate being in the spotlight but I guess I am getting to use to talking about diabetes. It was a breeze.

October 10, 2006 Well, one of those days with a dreaded question...Mom, why does my blood glucose level have to bounce around so much?? Because I am a failure as a pancreas? Okay I didn't say that. I simply said because you are a little boy who is growing and who happens to have diabetes. Sites come loose, tubing developes air, fat screws with metabolism, growth hormones mess with insulin--because diabetes is a nightmare and we live in the middle of it! I am doing the best I can but you still go from 2.9 to 17.9 in one day. Maybe I'm failing but I am trying I swear!!! I would take it away from you in a heart beat but its not my choice. All I can do is work like crazy and try to keep you healthy.

October 9, 2006 Happy Thanksgiving!!! To all of us who celebrate Thanksgiving this weekend, may it be a wonderful and loving occasion filled with great bg levels!! Now the 10 things that I am thankful for this year...

Both my boys are alive!!!
Diabetes lives here with us but it no longer rules our lives
My boys are happy
I have been able to touch so many lives and offer some sort of support and/or help
We have treatment options that we didn't have even 7 years ago
Meters that don't suck up a quart of blood at every test and take a strong man to carry
That Liam has never had to use Glucagon
That we have a school that is supportive of Liam's diabetes care
The incredible friends that have surrounded me
That I am able to maintain this site, the online support network, with up to date, accurate, and relevant information for ALL people living with Type 1 diabetes.

October 6, 2006 Today is the day that our DTC fight was lost. That isn't to say that there have been negative changes in the DTC. This is my fight--my case. I have been disallowed any back credit for the DTC. I was given the monies from the year we began our court battle until Liam is 14. There will be nothing more. Part of me wants to sit and cry. I fought so hard and I have lost! Why me?

Simple--I made the most noise. When others weren't interested in this fight, I brought it to light. When other organizations said it wasn't their fight, I made it this "organization's" fight. And we won! When I received rejection letters, I swore that others wouldn't go through what I was. I said I would see this through. I would be CRA's nightmare and I guess I was. The price I pay is that I won't get back pay. The reward I get is that everyone else does! That there finally is a level playing field. That there finally is some knowledge and some progress. We will never go back. We will only continue to fight to move forward.

October 5, 2006 As we prepare for the Thanksgiving long weekend, Liam was asked to draw what he was thankful for. He told me how kids in his class drew pictures of the great meal they will be having, of hunting a turkey and other kid stuff. He then said that he drew himself on his quad. I suggested that he was thankful for his quad and being able to ride around. He quickly told me no. What he was thankful for was that he was alive to do these things. I was amazed. I thought that was pretty deep coming from a 9 year old. Realistic, sad but true. He has heard the story of how he almost died. He knows how important insulin is to his life. He occasionally hears about complications. He knows how important his care is to his health and his well-being. Its funny, I have been spending too much time sitting at my own pity and frustration party. His statement just puts everything back in perspective. I am very grateful to be alive and doing what I am doing. Most importantly, I am extremely grateful to have both my boys--alive and living life to the fullest!

October 2, 2006 So I am minding my own business, trying to get at least 3 hours of sleep last night. Liam had been a little high before I crawled in my cozy bed but I had corrected him. The site needed to be changed sometime later today. Did I mention that my bed was nice and warm and cozy?? Well all of a sudden I am literally shook awake and not in the usual way for me (my heart tends to race and it will vibrate me awake). The walls were rattling and the thunder roared outside. As I tried to recover from my first set of heart attacks, I looked at the clock and it was only 1am. Not time to get up and test quite yet. I laid there a little longer but I guess I was not supposed to! The walls shook some more and the thunder and lightning was more intense than ever! There was no sleeping (unless you are my boys!).

I got out of bed and grabbed the lancet and some strips. We are using his Cozmonitor so I didn't need a meter. I reached for the light and saw my room lit up by lightning. I changed my mind on adding more electricity to my room! Instead I felt around for my glasses and then found the ketone meter. I was going upstairs well armed! When I finally was able to get the Cozmonitor to work Liam was 24(430)! Crap! Checked for ketones. None! One victory.

Okay, diabetes was not going to beat me that night!!! I headed back downstairs and gathered my equipment. I was doing a site change right then and there! No numbing cream (the kid would never know, he was asleep) just alcohol and IV prep. I got to work. Liam did wake up just before I inserted the site. I was glad because I didn't want to have to pin him down on top of everything else! He was fine. He then got up while I prepared the correction in a syringe. He was perfect after that...and you know what else happened? The thunder and lightning quietly rolled away! Who says someone isn't protecting our kids ;-)

October 1, 2006 If its no rest for the wicked, I must be the worst!!! There has been no end to anything lately! Go, go, go. Dealing with bg levels, illness, and life. I need a vacation and I think I just had one!

In case you haven't noticed, I have been making a few site changes too. Hopefully it will be for the better. I have changed the online store completely to allow for better viewing. I have made a few changes to the front page. Traffic is up so hopefully we are doing something right :-)

September 2006

September 30, 2006 Well, needless to say, once Liam was at his father's his numbers were fine! Of course I had fixed everything by then so I really should have been able to relax. I did eventually--too bad I can't do that more often! But that is soooo off topic. What is the topic? Well my Diabetes Advocacy bags of course. It seems that CWD bags had to be temporarily halted because of abuse. Doesn't give you much courage or faith in humanity huh? In my last ranting, I have found a person who is trying to launch a very extensive "bag" that will reflect his business. That is great!! I will be glad to see something come about one day! We deserve it. I still haven't given up on a Diabetes Advocacy bag though. It would be so great!

Even just an envelope filled with a few things. Some items of support--magnets, pump cases as one Mom suggested, temporary tattoos, literature, a meter coupon, a pen. Just "stuff" that would come from Diabetes Advocacy so that those living with this beast would know that people care. That people are trying to make a difference--to make their lives easier....You just never know....

September 29, 2006 Do you ever feel like you just can't win? Like you would be best off putting your child in a bubble, giving them "traditional" diabetic meals, and not letting them be a kid??? Face it, it would make life a LOT easier. Can't be done though! Too bad. We had some perfect numbers. Life was grand. I could see a beautiful A1c. I could see a full life. Yesterday life happened. There was no school so we went shopping. This involves a lot of driving and sitting because there are no stores within 55km of us. Liam watched his DVD player and did little. We walked through the stores--no running, no playing, no recess or gym class. We had chicken for lunch. We used a combo bolus and he really didn't eat much. We had lots of water. Liam was low twice during our outing.

We came home and I was convinced to let them go out for supper (yes I can be a pushover I know!). Off to the restaurant we went and Liam of course had pizza! I bolused for pizza. He was high. We stopped and the park and he ran around for a few minutes. We then came home and had the cake that I had bought to go with our much more healthy supper that we didn't have. He was high. We laid on the boys' beds and watched a movie together. There was a bit of wrestling now and then but he was high. He got up in the middle of the night. He was high. I got up this morning. He was high and yes, now we had ketones. Can you see the joy? He was never high as in in the 20s (360+) but he hovered between 13-18 (235-325). I am suppose to look at the positive things in my life and remove the negativity so I can't say that diabetes SUCKS!!!!!!! I have to instead be thankful that he is at home where I can test the crap out of his, pump him full of insulin and poke enough holes in him that soon he will start to leak bodily fluids!! Time t test again...

September 27, 2006 It was a given right? I mean the night before and the entire day were perfect! Every number was a dream. It had to crash right? When that little voice says "change the insulin now". I should know that it MUST be done NOW. I've been down this road before but basically I am thick! If there are not neon signs flashing DO THIS!!! I tend to miss it--and miss it I did!! I waited until today to change Liam's site and cartridge. HUGE mistake!! He was high most of the night and ALL morning!! I gave him more insulin in 4 hours than I would normally in 24 but he never crashed! He slowly came down. I really hate this disease!!!!

September 26, 2006 Well, I have been playing for almost 24 hours now. Liam loves it! I now need new pump cases to hold his lancet and strips without losing anything. That makes me nervous. He thinks it works rather smooth.

Mom isn't as sure. I like not carrying around so much stuff. I don't like using it for AST. I find it too bulky and I don't like using it at night. I don't turn on a lot of lights and loved my lit up strip in the Mini (Flash). The backlight on the pump itself doesn't quite cut it.

The other problem? Well, that's my fault. I thought that I could trick the pump. I did a correction last night. I have it set to remind Liam to retest if he is high. I didn't use the Cozmonitor because I didn't want the alarm to go off in the middle of the night. DAH!!! I still corrected! The pump still knew he was high and still was set to alarm! I woke up at 5am wondering why Liam's pump was alarming. I actually panicked thinking something was seriously wrong! Teaches me to think right?

September 25, 2006 I need a life but I am soooooo excited!! Liam's Cozmonitor is finally here!!!! I was suppose to be hooking up the webcam that my father sent to me as a gift but it just got moved to the side. A Cozmonitor!!!!!! Finally!! Oh happy dance! Where is that kid so I can play?? Dang! He actually has to go to school! I will have to wait.

The irony of this--I was on the phone speaking with a woman about the DTC and then pumps. We were discussing the Cozmonitor and suddenly I said "Liam's has just arrived!!" Off to play!

September 22, 2006 Well one of my many, old pet peeves are back! For years, I have desperately wanted to see a "Bag of hope", "Wizdom Kit" and now Welcome Kit come to Canada. In the last instance, I know how long they have worked to get this kit created and that Canada was in their initial thoughts. As for the other groups??? Where do I start??? Why can't JDRF Canada offer a Bag of Hope? Because all of their money must go to research. Sad. Why can't a small amount go to support. Through support comes donations. I fought that battle for a long time. As you can tell, I lost! Then there is the CDA. Why don't they offer a Wizdom Kit? I just didn't even go there! Okay, you could say, well why doesn't Diabetes Advocacy offer something along that line? I would but it costs money and I am not a multibillion dollar charity. I am but one organization who struggles just to pay for itself. I would LOVE to but these sort of things take serious corporate funding. Even if I could get something in the line of a support bag (which is not exactly within the realm of impossible) then there is the cost of shipping these "bags" throughout the country. Anyone using Canada Post today knows that that part is a huge hurdle :-) Another thing to add to Barb's dream list...1. A support bag for the newly diagnosed 2. A supplies charity for those who can't afford supplies at that moment in time. And we know that the list goes on :-) One day....One day.

September 21, 2006 I was asked recently if the mourning for your life before diabetes ever ends. I said yes...and no. For me, the overwhelming gratitude that my son is alive keeps me going. I still can't look at a small child without having flash backs however. When I see a 2 year old curl up for a nap, I think how lucky that you don't have to be tested to ensure that you aren't low and passing out! When I see those little fingers, I am amazed to see how tiny they are. I use to squeeze enough blood out of Liam's fingers to cover the entire tip so that there would be enough for the meter. It still kills me that we have so much "stuff" to remember when we travel for an hour or for a week.

I have met some incredible people because of diabetes. I have travelled places I may not have gone. There have been some good things but there are still times when you know that you can't "fix it" or "make it better" by giving the "medicine". Those are the hard moments but they pass as you watch your child being silly and enjoying life.

September 20, 2006 Well, I was going to post yesterday and do a happy dance. Liam had TWO entire nights of readings between 5 and 7 (90-125). I was beside myself!! I don't know when that has happened. Two whole nights!! Last night was starting out perfectly. He was 7.5 (135). Life was grand but it couldn't last. New site, new insulin, 2 am spike! OY!!! 16.8 (300). At least it went down but hey, diabetes has to keep me on my toes right??? Joy, oh joy!!

September 18, 2006 Could I really be making a difference? Today I received an email from a family I was supporting. I wish I could say I was helping but I just don't feel that I did a heck of a lot. Mom emailed me today with the fact that things are slowly coming together. They aren't perfect but much better than previous meetings. Anyway....the point of the ramblings, she copied a letter that she had received from the special ed people at the school board. The board was stating that they are in the process of consulting on a policy for children with diabetes in their school district . One of the main tools that they are using is a Draft document created by this group called the Diabetes Advocacy Association and she suggested the mom check out the website www.diabetesadvocacy.com. Now you could have knocked me over with a feather! They were actually looking at my stuff! They made it sound as good as it is! They were recommending people use it for a guideline in their child's care??? Holy cow! Does this mean I've made it? Okay maybe not but it does mean that people are finally listening. You have no idea how wonderful it made me feel. I am being quoted! My work cited! My website is not an association but I can live with that! Maybe we really are making headway--one district at a time is slow but slow and steady wins the race!

September 16, 2006 I was just thinking that I was getting use to our latest infusion sets. I didn't stab Liam with the serter multiple times. I was getting sites to last but I should no better than to get over confidence when dealing with anything to do with diabetes right? I mean I was getting basal rates adjusted. I was going to bring down that A1c that had to be ugly after previous pump fights.

Fool! We have managed to have two sites pop out this week!!! Yep, I was really tempted to duct tape the site to him today when he left to spend the night with his father! I asked if I could add extra tape but he declined.

I blamed Emla but the last site had to Emla because it was an emergency change. Ice pack and away we went. Then I blamed IV prep. That stuff is suppose to make things extra sticky but it doesn't really work right? That had to be the problem so I used Skin Tac. I came home to a little boy with an ice cube on his arm waiting for his site change! Dang! Okay, back to the Mastisol. That has to work right? and just in case wash the area with soap and water first, then layer on the alcohol, the mastisol, the tape, the two other tapes....I really wish he had let me wrap that last layer of duct tape around his arm!!

September 15, 2006 Balance. A word so often used in diabetes. You must balance diet and exercise, balance food and insulin. Today I was slapped in the face with another balance--the realities of diabetes and the fear of society. I have been inundated with school problems this year from parents all over the country. I do all I can to support and help. Hopefully for some parents, we have made some positive differences in their lives and the lives of their children. Then there is the situation I was made aware of today.

I haven't responded yet because I have to see what can be done and honestly, I have to calm down a bit first. You see we fight for the protection of our children in school. We fight to have them tested and watched. We fight to have someone look after them the way we do. With care, with concern, with eyes always on them. When that gets conveyed to some educators, they see it as overwhelming. This child must be "severe" or have diabetes "really bad". In extreme cases they refuse entry to the child to school claiming that they don't have the resources to deal with such a horrible disease. In even worse situations, they will suggest the child go to a "special school". A school for the disabled that has health care providers there all day long.

Ouch! How did the pendulum swing so far? How do we get them to understand? How do we get the help we need without ostracizing our children? How do we protect those 4 and 5 year olds and still let them be kids? In my case, I was able to go to school and pretended that I was just an assistant in the class. It became a joke but it was what had to be done to keep my child safe. Others don't have that option. You can't quit your job when it provides the money for supplies or the insurance coverage! You shouldn't have to end your career because your child goes to school.

No easy answers and another battle on the horizon. How I wish I could take these battles away from these families. I wish they could send their children to school and know that they are protected and life is perfect. That's a fantasy. That's only if we move to a nice commune where everyone understands and the teachers all have dealings with diabetes. In the meantime, we continue to lean on one another and fight together. There will be change. We have done it before and I for one and far from done. That super cape is still around here somewhere.

September 14, 2006 Last night I went out to a dinner with our local diabetes association. How do you know that you are with a group of people that live with diabetes? More people order diet pop than non, even if they don't have diabetes. All parents in the group have cell phones and at least half of them have them ring one or more times during the meal. Dinner conversation is filled with what have your blood glucose readings been lately? Who is on a pump now? What is this meal going to do to my blood glucose levels tomorrow??

Its great! I went to a meeting once and we tried to explain to a gentleman how important that sort of thing was for us. He looked at us like we were crazy and said we shouldn't obsess about these things. He stressed that when we got out together we should be talking of other things and getting away from diabetes. We looked at him like he had three heads. He obviously doesn't live in our world! There is no getting away and finding people who are in our boat? as the commercial says...PRICELESS!

September 12, 2006 Okay its a new day so now I get to whine about diabetes and my lack of sleep right? What the heck is it with diabetes?? Last week school started. Liam was high. This week I began to tweak. I upped ratios, slightly altered basals. Life should be good. WRONG! Now he is low! Well sometimes! He was low Sunday night. I was cautious on Monday night. What happened? I didn't change rates, I left well enough alone and he was high!! New insulin. New site and HIGH!!! My nerves! I fixed that--I upped the basal rate I wasn't going to up. Sure enough he eventually came down. I guess my life would just be too dull if it wasn't for diabetes right?? Sure!!

September 11, 2006 I was going to do my usual whine about my night last night but then I thought about the date. I remember when I got the call that the first plane had hit the World Trade Center. I said that was insane. It would never happen. I then received the second call from the airline stating that my grandmother's plane had been grounded because of the World Trade Center crash. I was stunned--and grateful that my grandmother was only grounded one province away and would be able to make it to visit us afterall.

As time went on, other issues emerged. I began to think about what would happen if this terror escalated. How would I get Liam's insulin? Like many others, I began to stock up. I had a month or two's supply of insulin and strips at all times but I knew that would not be enough. How would I keep my child alive if I couldn't get him insulin? I tried not to dwell on it too much. I could still see Liam's gaunt body in that hospital room. I didn't want to go back there ever!! My mom was phobic. She wanted me to move. She was terrified that we would be isolated here.

The day the world stopped. The day travel changed forever. The day our dreams of invincibility disappeared forever. War no longer was just for those people over there. It could happen anywhere....

September 10, 2006 Well, its been a weekend of inspiration! I came across "replacement" bracelets for people's medical alert bracelets. I don't know why I didn't make the connection last time. I did the same thing with Liam's Medical Alert tag! OY! Well, now Diabetes Advocacy is offering replacement bracelets for people who don't want to pay for the engraving of 20 different tags or have perfectly good tags with broken or out grown bracelets. Brilliant!

But that was nothing. The best idea came from someone's walk t-shirt. They had a t-shirt for a JDRF walk that was just like the Master Card commercial. It listed the costs of diabetes supplies but the bottom line was the cost of caring for their child...priceless. I really am going to work with that. There is so many things that could be done! On an individual basis, the costs to families. On a national level, the cost to our health care system. You know I will be working on this one!

I now apologize to those who are waiting for the form letter to MHAs in Newfoundland and Labrador regarding a school policy for this province. I was too busy alternating between attending my own pity party and being struck by brilliant ideas!! It will be done in very short order....I guarantee!!

September 8, 2006 Kids!! Who invented them anyway??? Last night the boys were with their father. I came home from a meeting and just as I got in the door, a friend pulled into my driveway. She informed me that Liam was on his bike up at the school. This is quite a ways from his father's house and I was not imp