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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 December 2007December 28, 2007 What the heck is it with the media and their "expert" writers??? I opened up my local paper and realized why I don't normally read it. There is a professional who is offering advice for the 2.5 million people living with diabetes who need to get through the holidays. I appreciate that. Too many people don't know or care how to take care of their chronic disease. They do need information but WHY, why, why do these "experts" never feel the need to differentiate between Type 1 and Type 2 diabetes? Some of the information does cross over but things like "don't forget to take your medication" and the dietary issues are different for these two diseases. We all know that it is important to eat healthy. We know that if you drink it should be in moderation. When you are taking an external source of insulin however, the issues do change slightly. For a Type 1 you look at peaks, feeding insulin or better yet carb to insulin ratios. Type 2s really do need to worry about how much food is going in and their medication because they can't "adjust or correct" with fast-acting insulin. I know, its me, but I really wish experts would learn to state "type one.........." Type two......" Its an easy disclaimer that would keep the rest of us so much more calm. December 26, 2007 I am not sure about this new pump. I really liked the time of day feature...you set the carb ratios to times of day. If its noon and your kid is just eating, they use the ratio for noon rather than having that brain dead moment when they say "well I am eating breakfast". It happens in my world. On the downside, I found that when I hit "pizza" to bolus for a high fat meal, it used the 1:30 ratio for supper rather than the 1:20 ratio that I use for a high fat meal. I think we are going back to the old standard. I knew that all of these bells and whistles would only be interesting for so long but hey, we still really like the new color! Liam is going to retry the Cozmonitor. We will get to try the hypo correction options that is suppose to be awesome. Time will tell. December 24, 2007 We are hooked up and working out the kinks. There is a weekly scheduler on the pump. I thought it would be great BUT today is Monday and I have it set for school...there is no school so it woke me up far too early. The time bolus thing is also a little interesting. We could hit breakfast at 8pm and it will use the bolus ratio for that time period. The downside is that if he is high at that time and I want to use a different ratio I seem to have to do the math. I remember reading something about a way to deal with insulin resistance so its back to the manual. So far not a lot of difference in the old one. New features that we will play with for now and probably disconnect within a few days but new toys are always welcome..especially at Christmas!! December 22, 2007 Its here. Its green. Its pretty and its sitting on my desk! Liam's pump arrived yesterday. Its like a cool Christmas present for Mom! Sadly it make take me until Christmas to finish reading the manual! I have most of Liam's details plugged into the pump but there are some neat new features which will help when he is not at home. The bolusing by time of day is awesome for us. It will eliminate the using breakfast bolus when he is eating at 11am. I also have the pump set to LOUD. They still won't allow us to set it to electric shock but one day :-) Back to reading!!
December 20, 2007 We've come a long way baby!! I was thinking about it today. I was online, which in my house means that there is no phone service and you can't reach me unless you email me. I looked at the time and realized that Liam could be testing. I also realized that it didn't matter as much any more. Once upon a time, I would make sure that the phone line was free and I was sitting beside it at all times I knew Liam would test and/or eat. Now, I don't think about it nearly as much. I worry about lunch time....if they have had a bad morning, I will hear about it then. I think about it after school in case I have to go to school but between the staff and Liam, I am pretty confident. Now I just can't ever have him change schools or have a major staffing change!!! December 19, 2007 I was watching a program last night. It starred a person that I know has Type 1 diabetes and wears and insulin pump. I kept telling the tv "tuck in your shirt and let us see your pump!!" Funny but no one was listening to me. Actually the other person in the room was. He reminded me that not everyone wants people to know about their diabetes. I reminded him that I am sooo out there, I can't imagine not being this way. He was right of course. This celebrity is very good about talking with children and being public about his disease in the right venues. I just think every venue is the right one. The more sane person would have to admit, what value would showing a pump on tv when the show had NOTHING to do with diabetes? People would wonder why he felt the need to show off his new cell phone. For me, I look at every opportunity to educate. I am like the friend of mine who will show her pump to a cabbie. I want people to truly KNOW about this disease. I want them to understand what we deal with. Everyone educates in their own way. I have to respect that. December 18, 2007 I got a late night Christmas gift. Liam's new pump has left the warehouse and is on its way to me!!!!! I had to send in new forms but they have finally figured out how our new pump program works and our new green baby is on his way!!! I can't wait to begin. There are a couple of new features to figure out and then we will be happening. We are so excited!!! December 15, 2007 Ontario is the only province to provide a nurse for our children with diabetes through their community health program. Recently there has been some fear that well-meaning doctors in the Markham area have suggested that a nurse is not necessary for our children. They suggest that we should just send our kids to school running high and not worry about them testing or being watched. I was personally stunned. I was more stunned by the response of people living with diabetes when I brought the issue forward. I had people who have lived with diabetes tell me that they have run high for most of their lives and what is my problem? I heard from parents who felt that our kids must learn independence and certainly do not require a nurse. One parent suggested that we go back to the old system of actually have a school nurse to assist everyone. I was taken aback by most of these responses. I don't think that they have had some of the same experiences as others have. Who cares if a four year old, newly diagnosed child is going to school and is terrified to test themselves. Who cares if that child doesn't know her numbers and can't interpret the results. Who cares if a newly diagnosed 7 year old can't tell if he is high or low. Who cares if a 6 year old still can't interpret what the meter means to her treatment. Who cares if an 8 year old feels peer pressure and doesn't eat all of the food that they have insulin in their system for and then goes out to play on the playground. I care about these children. These are the reason that they need a nurse. Sadly many schools will not assist these children. The teacher may not feel comfortable in dealing with our children and yet we are to expect our children to deal with this. We expect our high or low child who can't think properly to know how to treat their bg level properly. We can't. We must remember all children in this equation. December 12, 2007 Why do I do it? Its a question that has come up a lot. Why do I do what? Keep my son alive? Obsessed about basal rates, bg levels and the latest technology and research? Those are all pretty obvious right? I am a mom. Its my job to hand my son over as perfect a body as possible. Why then do I do the rest of this? Again its simple. Knowledge is power. All people living with this disease should be allowed some power over this disease. If you read my regular rantings or you live here too you know that this disease often leaves us feeling powerless. This is my small way to help empower people. To let them know what is out there. To help them to understand that they are not in this alone. What do I get out of this? So very much. A wonderful network of friends. The chance to travel. An email or card that lets me know that I have made a difference. The satisfaction of knowing that more people are now receiving the DTC because of my efforts--CRA are even telling people that they can get this credit--that's quite the change for the days when they did everything to deny our claims. Yep, diabetes sucks but the network and the opportunities it has afforded me? Incredible. Would I give it all away for a cure? In a heart beat!!! Sleep would be a welcome change! December 10, 2007 Welcome to the wonderful world of rollercoasters...I mean diabetes! Last week it was lows that just would not come up for love or glucose. This week its highs that make NO sense!! Its driving me crazy! I know, short trip but I knew this would happen. My biggest issue? What the heck is going on in his little body while I wait to see what to do?? He is high and I mean 17 then I bring him back down to 7 then he spikes back up to 17. No its not air in the tubing. No its not high fat foods. Its just my nightmare! I made a few small adjustments. I am making sure to pre-bolus when he is high. I am slowly going crazy. I hate diabetes, I hate diabetes. I suck as a pancreas. Who knew I was suppose to be a pancreas in this lifetime!?! December 7, 2007 Its Christmas time and my boys are off making a Christmas music CD today. Because they are going to a recording studio instead of class, they didn't need school bags...well Liam did. Actually he decided he could make do with the extra large lunch bag he has. We put his kit and log book on the table in hopes he would remember everything this morning. We didn't want to put the meter in the fridge with his lunch. This morning he grabbed the meter, the book and his lunch. He was suppose to grab glucose too but I don't know that he did. We have tablets in one jacket but is it the one he has on?? I hate this. No just grab your lunch and go. He is worried about a pen to log numbers (yes Mom can just read off the meter but don't tell him that), a note book, a meter, strips and glucose. What a going on! That reminds me. I had better get my bag packed for our evening of shopping and "Christmas bonding". Fun, fun, fun! December 5, 2007 Have you ever been a part of something that you knew was great but never really realized exactly how incredible it truly was? I have had the privilege of knowing a woman by the name of Barbara Pasternak for quite a few years now. We have emailed, we have met, and this year she asked me to sit on her scholarship board in Newfoundland and Labrador. Barb is a stunning woman in every way. She is an incredible mother, an incredible advocate, an incredible voice and an incredible person. She runs a successful business and an equally successful diabetes foundation called Diabetes Hope. This year my children's school did a walk for them. In Ontario, the Diabetes Hope Foundation also launched its own walk. Today I got a copy of their year in review. It is an incredible booklet that moved me to tears. I read through all of the wonderful things that they had done. I looked over the names of the students that they have helped. I saw the generosity of so many people and organizations. I even saw my name listed at the beginning because I was involved with the scholarship. I was so proud to be in such awesome company. I now have to contact them and get my own Diabetes Hope "Circle of Hope" necklace. It will be my Christmas present to me and $10 well spent. December 3, 2007 I think we have reached a new weird. Last night Liam was about to hop in the shower but instead came out of the bathroom laughing. He had a test strip stuck to his stomach! How the heck did he manage that one?? It boggles the mind. I topped him today though. I was taking out Christmas decorations--unwrapping the breakables, wrapping back up my every day breakables. What did I find in the box I was using amongst the decorations?? Why a test strip of course! In freaking credible!!! They are everywhere!! I have a friend who thinks they can be tamed but I am trying to tell him that they they are truly ALIVE!!! Its not the people, its the strips...they are evil just like the disease itself! December 2, 2007 I am still in the process of calming down enough to make sense in a letter to the powers that be regarding recent issues in diabetes care. I have had people suggest years ago that I should just take in some of these kids. I so wish I could. Barb's diabetes boot camp for kids and adults alike. What fun I would have!!! I think it could work. What makes me think I could make people test or inject? No choice baby! Seriously, can you imagine an atmosphere that would allow someone to test with someone there to help them interpret the reading in a real life setting? Someone to help them carb count a real meal not hospital food or the plastic stuff in the dietician's office? Someone to help you understand what is good or bad for you and why it reacts in you the way it does. Someone to log with you and then make sense of it? Someone to help you breathe through a sick day? Someone to show you what a pump really does or how lantus or a basal/bolus regimen could work for you? November Diabetes Awareness Month!November 29, 2007 The health care system is beginning to scare me more and more each day. Do I see an answer? In some respects, yes I do. Last week was the story of a young man on a pump who seized, had glucagon, went to the hospital and they refused to give him a glucose IV drip but wanted him to eat a peanut butter sandwich and drink milk. He was nauseous and wanted the IV. They refused. This week, a family using NPH and regular insulin for there child. First problem. Why are they using such a terrible system?? Answer--its what the provincial formulary will approve. Insane! Second problem, child is peeing ketones. We know this because parents are testing urine for ketones. I haven't used ketostix in ages. I can't remember what the colors mean except purple is really bad! Third problem, they can't get any medical help and are calling me to help them get rid of the ketones. Personally, I wanted to bring the kid into my house, test on a blood ketone meter, correct with fast acing insulin, pump fluids and test the crap out of him. Of course I couldn't do that so I had to walk them through what I would do in there situation and stressed that they needed to speak to the child's doctor. As the conversation progresses, Mom says she has taken son into the ER previously with a bg level of 37 (666) and they sent them home telling them that they won't touch him until he reaches 50 (900). What??? I am praying that somewhere there was a misunderstanding. Who would leave a child that high and do nothing?? So my answer to all of this? Well, we know that the drug formulary should be changed. That's a given but what about poor hospital care? Who can help in an already overly burdened system? Why not use mentors? People are calling me already and have been for years. If they don't call, they email looking for answers. Why don't we put people with knowledge in hospitals twice a year to update those who don't deal with diabetes every day? An in-service to ensure a high level of care. What about offering the same thing once a month for the general public or individual counselling on general care information. I am not talking about giving medical advice but helping them to understand the information put in front of them. To help them to know what the readings mean in terms they can understand. To help them with their diet. Okay, enough of my soap box for today but I am not done. Tomorrow's job is to get this message out to those who can make a difference. Who can create real change...before a child is dead.
November 28, 2007 Its a long time since it happened, but tonight when Liam tested he got a squirter. What the heck is that? Well, you know when you lance your finger and blood comes flying out and where ever you tested looks like it belongs on a CSI episode? The first time it happened, he was testing before supper. I know some people have issue with where they test. We don't. He tests at the table regularily after washing his hands of course. Anyway, he tests and we have his food on the table. The blood shot across and splattered down the side of his soup bowl. His comment that time? Wow! It missed the food! It had been a few years so when it happened he was a little anxious. He got out a tissue right away and looked worried. I said "cool!" Its been a long time since that happened! I have no real idea as to where he lanced because blood was spattered all over his hand. He lived. He tested. He was in range....yeah!!! November 27, 2007 Don't you just hate those nights that are good but the numbers are so good that you are waiting for them to crash?? You don't rest any better because you don't know which way you are going to go. Liam was 5.2(about 95) last night. He was 5.9 (around 105) when I went to bed. He was 7.1 (130)a few hours later. He was 7.9(140) after that. Whew! Now we wait to see what the day brings. Its rainy so its an inside day but after school is badminton. And the rollercoaster ride continues! November 26, 2007 Well, knock my over with a feather. I had a strange phone message when I got home yesterday afternoon. One of the research people for a MHA wanted me to call her. Okay...sadly I ended up tangled in a bunch of things and it was later before I got back to her. No answer. Later still I got to my emails. There was the reason for her call. The MHA was going into a meeting that afternoon and needed information on insulin coverage. DANG!!! My big chance to get someone onside for change and I wasn't home. I had my phone. They could have called the cell. Hopefully all went well. I just thought it was pretty cool that they would be calling me for research information. I did recently pull the pompous card and told a lawyer that I was internationally recognized for my knowledge in the area of diabetes and therefore should be treated with some respect. He had to agree. Now to get some better funding for this new found arrogance!! Oh well. November 24, 2007 The next day and things were still hell. I woke up about every two hours to make sure life was fine. It was. I didn't do a lot of breathing. I am exhausted but my kid is still alive and that has to count for a lot. I really hate this disease. Just wait...we will see a bunch of highs now. There will be reduced activity as the weather changes over. There will be increased adrenalin as excitement over Christmas mounts. Oh how I love this disease! November 23, 2007 Its 3:40am and its already been the day from hell. Actually maybe I should say a day influenced by Heaven. I had my alarm set to wake up at 4am to test Liam. At 2am I woke up. I did NOT want to get up. It physically hurt to open my eyes. I was not testing until 4am. Wrong! My mind would not let me sleep. Fine, I would test him. He was low. Crap! I got up, got out the glucose tablets and so the night began. If I dozed off to long something woke me up. At one point I heard this loud noise like something being rolled over my grates. I tested again. He was still low. Over 90 minutes later, about 12 glucose tablets, a 20g CO glass of juice and a 50% basal reduction and here I sit. I can't sleep. He hasn't been over 3 in the past 90 minutes. This is insane. We just reduced all of his basal rates last night! Hold on, that would be two nights go now. More work when my mind is clearer. Okay, time to retest. Will I get to sleep tonight???? Not for a bit yet! Its been 2 hours now. He has been 3.6,3.0,3.6,3.9, and 4.2. For those of you in the US, that's between around 50-65. Its insane. I have just given him 2 more glucose tablets. I so hate this disease!!! This test looked like a blood bath as he moved as I was squeezing his finger but finally--4.9!! I gave him and extra tablet to be safe. I swear that we have killed a half a bottle of tablets--that is the big bottles! The ear whigs will be happy, I can go to sleep and quit killing them. November 21, 2007 Are lows in the air? That would explain a lot. Liam was 2.8 (50) at 2 this morning. I was exhausted when I finally got to sleep. On the upside, those waking hours allow you to get work done! I was very lucky, he was just low--again. He had been running low or dropping for most of the day. I have changed his basals and am now waiting to see everything sky-rocket just because! Luckily he did not seize during any of these lows. I do not know if some are just more prone to seizures or I test so often that we have been able to avoid them. I met a friend the other day who's son is not as lucky. He has had more than his fair share of seizures. His last seizure was bad--like there is a good seizure but what made this one worse is his hospital care. Someone forgot to use Diabetes Awareness month as a learning tool for their staff. The child went into the hospital after he had been given Glucagon and was on his way back up. He was a whopping 4.1 when he was admitted. Because of the Glucagon, he was nauseous and wanted to be put on an IV drip rather than try to eat anything. The nurse refused! She made him eat peanut butter and bread as well as drink milk. Her diabetes care ideas are obviously out of date. The child was on an insulin pump. He had no long acting insulin in his system thus there was no need for the protein and complex carbohydrate. He should have been listened too. He may have been "out of it" but he knew that he could not stomach food and needed to see a rise in his blood glucose levels faster than milk and peanut butter would allow. The story left me shaking. It left his doctor fit to be tied. It left his mother exhausted and his little brother scared. We need change at all levels. People living with diabetes deserve proper care. Caregivers must be given the training to keep up with the times. How is this done? I think I have found a new challenge. November 20, 2007 What is right? What is the balance? Where do you draw the line? I have been asked in the past to do research for various groups and corporations on various aspects regarding diabetes. I have been asked to speak. I have been compensated financially. I have been compensated in kind. More often I have just been given a thank you. That is my dilemma. How do I stop doing someone else's work for free? You see the work needs to be done. The research and information is vital but my time is also worth something. My mission in life is to improve the lives of people living with diabetes. My problem in life is that it does not yet pay the bills. No one funds this site in any way shape or form. I help because it is so important for people to know, to be empowered, to understand and have resources. I have to learn to say "no" or to say "pay?" I just really am terrible at either. November 19, 2007 What a day! First I learnt that there is no time when you can't teach people about diabetes. The first incident occurred while sitting in a waiting room at a court house. We discussed the increasing rise of type 1 and type 2 diabetes in this province as well as the world. The chances of meeting or being someone living with this disease. Next stop, was in a conference room. There we discussed the fact that Type 1 diabetes is for life and the advances of CGMS technology. I think I ended the conversation WAY over the heads of my audience but they did learn something. Fast forward to my evening. Now we are at home and the new nightmares begin. Liam comes downstairs and claims to be shaky. He test but he is fine. He says he has a headache. He tests again. He is dropping FAST! I look at a math paper that he is working on. It is terrible to say the least. He is redoing a test he only just passed. He tells me that he was 3.3 when he wrote the test--what the????? He is NOT to do a test when he is low. That was established last year. I work with him on his math--not doing it but writing for him. His hand is visibly shaking. He can't possibly write. He tells me the answers. I write them down. As his bg levels rise, so does his speed of processing. He suddenly "gets" what he is doing! His answers are dead on and he is right! I go from being a frustrated mom at my child to one frustrated with a system that is not paying attention to cognitive impairment. More work to be done. November 18, 2007 I complain about all of the diabetes garbage that I find around. Like opening Liam's meter case and having 100 strips pop out at me. Not a positive experience! I have found a great use for some of this crap--I mean neat stuff. A friend of mine uses pump tubing to tie up her plants in the summer. Very cool! Tubing is strong and it works! She also uses tubing for her niece to make necklaces with. Again, cool when you are 5. Last night, I climbed into my bed and found a dead strip on top of my blankets. What did I do with it? Well, I had forgotten to bring in my book mark so it worked perfectly! Diabetes breeds creativity...or insanity but we will stick with creativity :-) November 16, 2007 What is the most important thing in your kitchen? For me its the scale. What the heck would I do without my digital scale? I was told that a woman had her scale confiscated by the RCMP because they felt her son was using it in his drug dealing. She argued it was a life-sustaining tool. It is in my house!! I can eyeball a lot after all these years, don't get me wrong but I still live for the scale. I like to weigh my fruit and use the carb factor. I weigh cookies and cakes for the same reason. Yep, I am anal. Yep, I like it that way!! November 14, 2007 A twenty second sound bite. That was all World Diabetes Day got on one of our news programs this evening. It was on the radio this afternoon. A friend did a CBC spot at noon. I had an article run in a regional paper. To me, it was still exceptionally disappointing. Maybe its just because I am a sleep deprived parent. What do I know? I know how much I hate this disease. I know how much it has robbed me. I have a small idea of how it has robbed my son. I know how it has hurt other children. I know how it hurts friends. Its not a joke. Its not a small thing. Its not just the obsession or the insanity that I joke about. Diabetes is a real threat. Diabetes is a real killer. Diabetes impacts every single thing you do. You do not just walk out the door at a moments notice. You ensure you have a test kit, hand cleaner, syringe, insulin, Glucagon, and glucose at minimum. You test to ensure you are in range and safe to play or leave. You adjust the rate of insulin going into your body when you are driving for long periods of time or exercising intensely. You test, test, and test again. Someone recently asked me how I knew all of my child's carb to insulin rations--I said I test. Its the only way to know how the body reacts. I test before I go to bed. I wake up every couple of hours. I test again. If I sleep 4 or 5 hours straight, I wake up in a panic. Its like having a newborn that you worry they will die of SIDS but this never goes away...or you hope not because that means you lost the battle. I hate diabetes. I hate that people don't "get it". I don't know what more to do. I scream from the rafters. I talk to everyone I can. I don't back down. Is it getting through to anyone?? November 12, 2007 Why is it that when you go to your diabetes clinic you feel like you are about to get your exam results? Worse still, you are terrified that you have failed. Its because there is so much on the line. In my case, its my son's life. I have to do my very best. I can't fail him. I never have but I worry nonetheless. Thankfully this clinic was no different. His A1c remained the same. His cholesterol had dropped again. Whew!! The rest of our clinic visit was normal for us--talking studies, sharing information and swapping conference stories. We talked pumps and discussed why I have decided to stay with the Cozmo. We discussed CGMS technology. The pressure this disease puts on us. November 10, 2007 I have out done myself. No I didn't I just tried something new ... and it took a lot of work. I have added a new page called "Awareness Presentation". I first did it in a Power Point slide show. I sent it to a few people and had a great response. Some servers blocked the presentation so I had to put it in Word and then send it as a pdf document. Again, I had a huge response and one corporation that was going to send it to all their representatives. Next stop was Facebook. I created a "slideshow" that was sent out. So far lots of tears. That's a good sign! On Wednesday I will send the link to various offices with a letter that I have already sent to various newspapers. Check it out and let us know what you think. November 9, 2007 Well, I have had a new experience--I went to go into get my flu shot. It was a family event. Liam tested while we were out. I went to the check out at one store. I pulled out my wallet and guess what fell out? A test strip of course! You just can't get away from them. I tried to keep the strips in one place but nope! November 7, 2007 Time to get the creative juices flowing. International diabetes day is only one week away. Have you got your letters ready to send to the media? Are you contacting your politicians to let them know what life is like? Are you involved in a rally somewhere? This is our day. I want to make it mean something. Its going to tax my poor brain. So much to say and so little time!! Add to that the fact that Liam's numbers are everywhere again but what is new on that front??? Christmas is coming and as facebook reminds me daily...we are under 50 day left. I thought that site was to put me back in touch with old friends not add to my stress?? Okay time to focus....I'll let you know if I think of anything intelligent to say! November 6, 2007 Does control matter? Is it too late once you have let yourself go?? Obviously not. I received a wonderful story today that truly made my week! A story of a woman who had not been controlling her diabetes but allowing it to control her. She decided after having complications in the form or retinopathy, that it was time to show diabetes who was boss. To quote her "at the beginning I was told the odds were against me (and my sight) but with hard work at keeping my sugars at great levels and strenuous laser treatment I finally have something going in the right direction". And boy did it pay off for her! After 19 months of being treated for proliferative diabetic retinopathy she has now been told that she has 20/20 vision!!!! I love positive endings especially with a disease that sees so very few! Way to go!!!! November 5, 2007 November is diabetes awareness month and this year of all years, I should be over the moon. This is the year that the UN chose to recognize International Diabetes Day--November 14th. This is the year that I should have huge campaigns underway. This is the year to scream and yell. This is the year to have media lined up. To date, I have been able to generate little interest. Its killing me. I wanted to email MPs every day this month with a new story of life with diabetes. I had little response so their stories will simply be added to my "Faces" section. I contacted media and reminded them that this day was coming. I heard nothing. I will not leave that however. I will write something to go in our local papers over the next few days. Things are not getting better. We have new treatments. We have new pumps and technologies. We have no cure. I don't sleep any better at night. I don't worry any less when I travel. I still watch friends slowly die of this disease. I pray for my own child and others like him. I die inside for those living with diabetes who are not getting as much help was they should. I die for those who cannot even get a family doctor to help them. I die for those who have no dietician or nurse to guide them. I die for those without a mentor to see them through. I will be brutally honest. I have often thought lately about giving it all up. I have had job offers to help people with this disease that have fallen through because of politics. I have had people ask me how they can help me in my mission and I have to reply that I just don't know! There are so many areas that need work. I get overwhelmed. Choose one thing?? I have again and again chose many battles but we seem to be gong no where faster and faster. Maybe I should focus on my sons. Focus on my life and look at a completely different career that will not offer the personal reward but will pay the bills and let me bury my head in the sand and ignore what goes on around me. I wish I could. I truly do!!! but I can't. I can't see people suffer. I have to try to help in any way I can. I hate diabetes!!! Its just not fair. What disease is right? I mean I have a friend who has been fighting breast cancer. She is young with children--its not fair. I have another friend with incredible strength who has just learnt that the baby she is carrying will die before it has a chance to live. She has a child with diabetes. She is a fighter. This isn't fair to her or her family. Diabetes is no different. We fight to be recognized. We fight to get people living with the disease to take it seriously. We fight to have our children's rights protected in school. We fight to have equal rights for adults who maintain tight control. We fight for assistance with the high costs of this disease both financially and emotionally. We fight to get coverage for the best possible therapies. We fight to see the best therapies approved for use in our country. No wonder I get to the point where I want to give up. No wonder I just never seem to be able to. November 4, 2007 Why do we not go on extended vacations without our kids? Because it takes weeks to get them back on schedule. I don't have babies but I am still struggling to get a hold of Liam's levels, get him back in a routine and make sense of his readings. I am sick having just seen levels too high, other levels too low because the wrong ratio has been used. Having to teach the 10 year old who is not a mature 10 year old sucks. At 10, they should be able to just go and play. They should be able to just do their homework. They should be able to just be a kid. Not in my world. Here, he has to remember to test. He has to remember to deal with highs properly. He has to remember to look at the clock before bolusing for a meal so that he gets the right ratio for that time period. Its insane and truly tests my limits. You feel that you should never go away. Two days tops, but you cannot enjoy any "you" time no matter how it is really spent. Routine--who says its overrated? November 3, 2007 I survived. Well I guess its Liam that survived. He did his first "Wake-a-thon". I never got a call all night. His bg levels were pretty good. He tested every two hours as requested by Mom. He came home Sunday battered and beaten but you know what? He had a blast! November 2, 2007 Who would think it was such a problem to get a doctor. My doctor will soon be retiring. His staff is turning over too quickly to keep up. I decided that it was time to get a new doctor. I like one that will stay in the community. One that will know myself and my children. Its time to get our flu shots so I began my search. I found out that I was hitting a brick wall. NO doctors were accepting new patients. I asked friends to see if they had any ideas and was horrified to find out that people living with diabetes had NO doctor. How were they being properly cared for? It sounds like there is a new fight--for doctors and health care in our province. We can ask for medical supplies, devices, and medications but if we have no one to prescribe them and look after our illnesses, what use are they? November 1, 2007 Hallowe'en is over. The treats are incredible! We have this thing--we go all over the place. Its not about the candy. Its about the fun of racing from house to house. Now you can well imagine what that does to bg levels! Poor Liam was out for almost 4 hours running all over the community. He stopped for one cookie and proudly announced that yes, he did bolus for it and yes, he did test the one time I told him to. Yes, that was just once! Scary but he had a blast and he came home in great range. Now we have enough candy and chips to feed a small army and will have junk in our house until long after Christmas!
OctoberOctober 31, 2007 Where do I start? What is there to say? A lot I guess. I was recently at a conference. It is always great to talk with old friends, catch up on our kids and issues impacting various areas. There were some other moments that were not as wonderful. I saw a man that I had met years before. He was experiencing complications from diabetes at that time. When I saw him last week, he was carrying a white cane. It broke my heart. I spoke with a family whom had had a second child diagnosed about a year ago. He was also diagnosed with a second chronic illness and was having a very hard time the many curves that life was sadly throwing him. He has a wonderful family and I sure he will come through stronger than ever. There was also an awards presentation. It was equally difficult. The father who wanted to run a marathon for diabetes. He had renal failure and was on dialysis before the event. His wife helped him to ensure he was able to be a part of the marathon and later went on to donate her kidney to him. My late friend Paul who was honored as a National Volunteer of the Year. Finally there was the emotional address by my friend Sandy Struss. She's an incredibly vibrant woman who left her audience--men and women in tears. October 25, 2007 Yesterday I was sitting in a restaurant having my lunch when I overheard two men beside me talking. One gentleman was discussing a guy who had gone low and as treated like he was drunk. He then mentioned a situation that had been on the news of a young man who passed on on public transit because he was low and was stepped over! He was shocked both at the reaction of people and he didn't realize that these were common symptom--acting drunk, passing out, being combative. I so wanted to walk down to where they were and give them my card. I wanted to tell them to check out this site and learn more about diabetes. Its important!!! But I am a whimp. I finished my meal and headed on my way. Darn! Missed opportunity but at least people are talking. Well I am off to where more people will be talking . The downside is I am missing the one talk I wanted to see! Oh well, hopefully there wasn't a lot more to learn. October 24, 2007 I was waiting at the luggage carousel and mindlessly looking at the ads I was shocked to see one advertising the UN declared National Diabetes Day on November 14th. I thought that was so cool! It takes so little to amuse me but seeing that blue circle? I was impressed! October 22, 2007 My nephews arrived last night. I get to visit with them for a few hours before I head over to my conference. I look at them, love them, and then my heart breaks. The youngest is three. He is so tiny. His speech isn't the best yet. He wants to eat and run. The four year old is a little bigger but his fingers are still so tiny. I still look at both of them and see Liam. It kills me. What my son had to endure at those ages. Our children are so brave. When Liam was 3, he would sit for hours at the table in a fight to eat. These boys were able to eat and run. What they didn't want, Dad ate. No stopping to test. No fear of tripping because they are low. I am so glad for them but it makes me realize what my poor child went through. I would not tell him that. He would milk it for everything. He is a very healthy, happy kid. I pray it will last. October 20, 2007 So I have officially left the building and am now doing some relaxing before conferencing. Getting ready to travel when you have a child with diabetes has as some interesting ramifications. First, when they aren't travelling with you, you have to make sure that they have enough supplies. Do they have the glucagon kit? Does someone know how to use it? Retrain just in case. Make sure the school bag as extra test strips and that they know to call your cell phone while you are gone. Make sure that there are plenty of extra supplies and insulin at Dad's for while you are away. Second it s getting your own bags ready. You are no longer able to carry sharps. You don't really need the 50 spare test strips that have magically made it to the bottom of your bag! You don't need three tubes of glucose. The extra strip bottle can stay home. and you only need one bottle of and cleaner not three. It just might be easier to travel with him! October 19, 2007 Every time I get Liam's blood work done I have to shake my head. We have been doing this for a few years and the response at the hospital reception area is the same. I understand there is a greater incidence of Type 2 diabetes in children BUT my son has been going to this hospital for his routine bloodwork since he was TWO!! He didn't have type 2 at 2. He was skinny, skinny!! We check in. They confirm that he has diabetes. They ask if he is controlled by diet and exercise? pills? insulin? I wanted to strangle someone. I know you can't know every disease but PLEASE! This is for blood work. He is getting an A1c done amongst other tests. He is only 10. I didn't think it was rocket science. Maybe it isn't. Maybe I am overly sensitive but URGH! October 18, 2007 Okay every time Liam has to have fasting blood work done, I work myself into a real state. I can do this any day of the week but these times are special :-) We only get this done twice per year and it means at least a half day off of school as I have to drive an hour to the hospital. Last night we add to my stress because the boys were at Dad's for the night. No mom to ensure no cheating. No mom to be the control freak that she is awesome at being. I had got myself to relax about leaving my kids for 10 days. I went to bed early to prepare for heading to "town" first thing in the morning. I tossed and turned and then the phone rang. I was hoping for a call but this wasn't it...Barb, Liam is low. What do I do? CRAP!!! (actually I said a different four letter word) I told him to whack the juice to Liam and I would get his blood work done later in the morning. We had a few other appointments and errands to do but the poor kid would go longer with no eating. As I went back to bed I thought...what if he is low at 4am when Dad tests again??? Finally I relaxed and said, then his blood work will be late for his appointment. Asking Dad to take Liam in is a waste of time. I would get it done when I came back from my conference. All would be fine.
October 17, 2007 My oldest son figured out a positive to having diabetes last night--your food is logged so you can swear to your mother that she let you have a meal for your snack before bed. Personally I woke up this morning not seeing any of the positives. I have lived as a parent of a child with diabetes for too long. To think back is to remember old meters that required enough blood to cover his entire little finger. To think back is to remember a little boys stealing strawberries because he was low and they looked "cute". I have been anxious because I am leaving my boys for ten days. I have never left them for that long before in their lives. I have figured out exactly how many site changes and how many insulin cartridges he will need. I have been scared that a site would go bad and they won't notice. I have worried that he would break the top off of the insulin cartridge tightening the vial. I can't worry about that . I have to have faith. They have done a site change that worked. I trained Brandon in how to use Glucagon last night. I trained his father before. They will be fine and I will call every day. This morning I was ready to pack it all in. No more beyond my own family. I have put my heart and soul into so much. This is not a venture that provides for a huge income. The rewards are found in other areas. I meet incredible people. I have helped create a few changes. I have been able to help some people. I have been asked to work with various people on various projects. I have been approached to have this blog published but nothing has panned out. Offers, offers but nothing that has become a reality. There have been incredible offers. Some I hope will still occur. Diabetes wears you down. You hope for the perfect A1c. You work to teach people. You try to get those in power to "get it". Everything is a battle. From keeping your child alive to keeping your own sanity to keeping food in your cupboards. Its funny but once I said that I would not buy or cook especially for one person in my family over another. Well, diabetes and life had a different idea! Ihave one child with braces. He can't have certain foods. I have been fighting Liam's cholesterol levels for over a year. That means different food for him. Its all good for us but all costs. So many costs of diabetes. October 16, 2007 Its that time of year again....fasting blood work. Time to once again see if we have brought down his cholesterol level any further. I hate these tests. It would be easier if we lived close to the hospital. I have to drive one hour. I have to plan to do this. It sucks. You spend all night and day praying that there is NO lows. If you treat, you start again. That is another problem for me because I will be away. I will have to do it when I come back--its a little close to the deadline of his appointment. In the meantime, he is fighting a little bit of a cold and his basal rates are all having to be changed. Gee, didn't I just do that??? Now I have to do it, pray he doesn't go low, and get that blood work done. Oh did I mention that I also am hoping that his A1c is under 7 and yet I am fighting highs at the moment. My new thing....he has been running a little higher (say 9 or 10--180ish) but no matter what I am doing, he is staying level. Studies show that that is better for his body than bouncing from high to low. It would also produce a similar A1c to the bouncing around but be healthier. Crossing my fingers here!! October 15, 2007 The day after the night before. Well, my oldest left the building when they came home and asked how the walk went. I replied that why do they care. He was gone to do some chores. Liam stayed to face the music. Where was his shirt? He didn't earn one. What did we do? All of the things I had told him when I called to see if he would come. Yes, there was a lot of food. Yes, there was a lot of prizes. Yes the kids seemed to have fun. But he wouldn't come. He had excuses. I was tough. He got teary. I said, don't worry, I already cried today. Yes, I am a terrible parent. I explained that I had asked nothing of them but to walk and support me but they couldn't be bothered. I reminded him that I didn't even ask him to collect sponsor money. He said he would have. He would too. He is good at that. He swears he will be at the next walk. I said that time will tell. I hope so. October 14, 2007 Today was our CDA walk. I had asked my children if they were going to walk with me. They wouldn't commit. They were going to Dad's house but they will be there for 10 days shortly so I didn't think that it would be a big deal to spend on afternoon with me. I was wrong. I called and my oldest wasn't going. I asked him to check with his brother--you know the one who has diabetes. Nah, not this year. Maybe next year. I told him if everyone had his attitude we will have no one show up at the walk. I further reminded him that this walk is about HIM and HIS disease. He was a smarty pants and claimed to be cured. He was off to play and Mom, don't lay a guilt trip on me. I got off the phone and cried. I have worked for months at this walk. Yes, I could have got more sponsors but we have discussed how I hate asking people for money. Yes, I could have got more prizes from companies--I don't mind doing that, go figure! I did have a box filled with goodies. I had more things than were provided by the organization we were walking for. I had games planned for adults and kids. I had ice-breakers to get people mingling. We had public officials that were going to join us. We had taken our walk up a notch. I was hoping it would be a great event. It was so great that my kids wouldn't go with me. I didn't ask them to do any more than be present with me, walk, play games and eat. It wasn't their problem. I was devastated. If I can't get my kids to realize that this is important, how do I get the public to "get it"? They see me up at all hours of the night. They see me analyzing log books. They see me tweaking. They see me counting carbs. They see me helping others who are struggling. They were here when my dear friend Paul died from this hateful disease. They still couldn't take time out of their busy rainy day to join me in "our" cause. I can't explain how hurt I was. I went to the walk--alone. I had some great friends who offered to travel to walk with me if they could but distance made that one a little tough :-) I had some incredible people who helped out at the walk. I hope it was a success. I hope people had fun. To me its about the interaction, the networking among families, the realizing that they are not alone. Its a brutal disease and too many people just don't get it. For those who helped, for those who donated both prizes and money...I thank you from the bottom of my heart. October 13, 2007 Our day started normally enough. Liam had a shower and as he came out of the bathroom we hit a new diabetes weird! We found a test strip. Heaven only knows where in the world it came from but we had a pretty good laugh about it. Boys can be creative in their thought patterns. With strips on the brain, it was time for me to count test strips. We are having our diabetes walk tomorrow. After the walk we are having a few games. One of the things we plan to do is ask people to guess how many test strips are in a 250mL. That is 3 months worth of Liam's test strips. It was shocking to see how many strips were in there. No wonder his hands are in such rough shape! It was equally scary to see how much money that little 5 inch bottle was worth!!
October 12, 2007 Why is it that now that my son is 10 years old, he wants to be involved in stuff?? Life was so simple back in the days when he came home and mom had total control. Now he is getting involved, Mom can't be there for most things. He is only so independent. Mom is now having a stroke! The latest? A wake-a-thon at school. I am sending a sheet for those who will be dealing with him. His night time basals are "sleeping" rates, not playing rates! While he is running around, I will be flying across the country. First stroke! The upside? I will be awake when its 4:30am here. Second stroke? His first ever baseball tournament. Mom won't be here...again. I am running for worst parent of the year award at the moment. Will they remember to test enough? Will they bring enough glucose?? Most likely not to my liking but enough to keep him alive. I hate this disease! Yes, I am travelling to learn more about diabetes but diabetes doesn't stop while I travel. Lima still lives with this crap and I am not there to buffer it. I hate this. I really just hate it. Can't I take it with me?? It would give him a break. October 10, 2007 It was one of those moment when you just want to say DAH!!!! I was going through studies for this site like I do and came across one that made me think...and someone paid good money for this??? On the other side, I also thought, more ammunition for schools. The Medscape article stated that children tend to exhibit poorer behavoir when high. What parent hasn't figured that one out?? Even my oldest son knows that one. he knows EXACTLY when to bother Liam. Its based on bg levels. If Liam is high, he is a prime target! That's when Brandon will pick. That is when Liam will go absolutely nuts over nothing. The best example of this was pre-pump on our drive across Canada. To pass the time when I wasn't driving, I would read one of the Harry Potter novels. Liam hates Harry Potter. The book went to the back seat as I was driving. I forget the specifics but the next thing I saw was Harry Potter go flying across my mirror as it smashed into my side rear window! Yes, it did leave a mark. Yes I was very tempted to leave a mark on my child but I didn't. I did pull over and we had a VERY serious talk (and an injection to bring him down). The article went to the right source. It asked parents the impact and if they noticed a behavioral change. Just a little :-) October 9, 2007 I spend WAY too much time thinking about diabetes! I was laying in my bed this morning and the strangest dream began to play through my head. I have a cousin who is pregnant. I dreamt that she was having to test her bg levels and was calling a meter company about the results. At the same time, I was trying to fill Liam's insulin cartridge. It wasn't a cartridge though. It was a rubber sack. Of course the sack had a slice out of the side and the insulin would not fill. I was in a panic. I had to have this fixed before I went away. I didn't need Freud for this dream! Going away for 10 days is the longest I have ever left my boys. I know that site changes can be done. They have never done a cartridge change but its pretty easy and I will be leaving them spares all filled and ready to go. What if the pump itself dies?? I inject every 4 hours. Can they handle that? The pump is new. It should be fine. Can you tell that I live to worry??? I am suppose to be going away to relax and learn. I will have to keep reminding myself of that! October 8, 2007 Happy Thanksgiving!!! Its that time of year again. A time to reflect and to be thankful...for insulin, for pumps, for new coverage in this province for our children and their pumps. I am thankful to all of your for your support. I am thankful for the conventions that I have been lucky enough to attend and continue to attend that have allowed me to learn and meet incredible people. I am thankful for my two healthy children. I am thankful that Liam had a site change done before I left for my next conference and it worked out fine. Enjoy your turkey dinners, your pumpkin pies, your families and friends. Thank you for being a part of our lives! October 7, 2007 It truly never ends does it? I feel like I have the same story going over in my head again and again and again! Going over in my life. Liam was low. I dropped all basals. I upped carb to insulin ratios. Nothing. Dropped some more and now?? Yep, high. Back to square one. Can't we please just have good week??? I will settle for the week that I am away. It means less worry for me. Does everyone feel the guilt? Its like I am not doing my job because I am not the perfect pancreas. Again, stupid! I am a person. I am not a god. I can only do my best but I still fear for him--for his body. October 4, 2007 Its funny, like too many others, I have become "addicted to Facebook". For me its a great way to get back in touch with long lost friends and the only way to keep in touch with my family (scary isn't it!). I caught up with a friend of mine and she asked why my diabetes tattoo was not more widely posted? I have it on a few diabetes related "groups" including our "Diabetes Advocates Unite" but I guess I need to make it more visible still. The tattoo page on this webiste received more traffic than any other part of the site. I guess they truly are the "in" thing. Its ironic, this piece of art, and truly if you have seen it, the person who did it was an artist caused such a fuss almost a year ago. In hind sight I hold the most blame. I am just a little passionate and more than that, I tend to wear my heart on my sleeve (or my back now). I allowed one person's opinion to get my back up and I lost it. That was foolish of me. Live and learn. I have since gotten better and learned to step back, cry or scream and then deal with the issue at hand. The true irony of the tattoo? I went to two conferences this summer. I saw some people at both venues and they didn't notice my tattoo. They had to ask to see it. It wasn't even mentioned when I received my award in Orlando. then again, my tattoo is nothing compared to some that I have seen on mom's and dad's that look like every day people :-) For those who have not seen my tattoo here it is again....
October 3, 2007 I went to get my hair cut today and realized what an impact diabetes has on me. First is the fact that the trip to the pharmacy is a $400 affair and that is before you add in my medication. From there I went to the hairdresser. The lady behind the counter asked me who I was there to see and my mind was blank! Ask me Liam's bg level this morning and I could tell you but the hairdresser that I love??? Brain dead! When things do begin to work again and I sit down what did we talk about? The fact that she does not have diabetes according to the ER but she wakes to Bg levels of 17! I recommended a doctor to her and off I went. I looked in my car and noticed that the InsetII that Liam loved and I had to see was still sitting in my car. I think I need to do some cleaning! I reached in my purse to find my medication. I found hand wash. I found used strips. I found enough glucose tablets to feed a family of four. I did not find my pills. We live with diabetes in our house. We preach the importance of taking good care of yourself. We do all we can to take care of our loved ones. We do all we can to take care of others living with this disease. In turn, I feel guilty if I sleep more than three or four hours straight at any given time. I carry glucose but not my own medication. I shop for heart healthy food for my kids and eat properly when they are with me. We talk about teens thinking that they are immortal. Maybe we think the same. I'm not sure. I am not even sure that I could change if I wanted. Diabetes truly does impact every part of our lives. October 2, 2007 Well diabetes hasn't gotten any better! Liam was nice and low again last night as I was thinking about going to sleep. Why do I think about sleep? I have adjusted basals. I have changed ratios. I have now changed the insulin duration. I will be victorious! Diabetes will not beat me!! I am empowered! Last night I got an email from my uncle. He is a computer guy and the person I call when I want to throw mine out the window. He is going to donate $25 to the CDA for every every Adagio product sold from July 12, 2007 to the end of the year! I am assuming its some kind of accounting program but either way, I thought that was pretty amazing. Today I heard from my friend who is doing the CDA presentation and looking for pictures. I was going through my Faces with Diabetes page. The stories still make me cry. I hope that the new submissions for this year's email campaign will have the same impact. Now for a good name. I had one but its disappears with Liam's wonky readings! I will remember it though! October 1, 2007 Have I mentioned lately that diabetes sucks??? Last night was a long night. Liam had a social studies project to do and it was taking forever. By the time his homework was done, it was very late. He tested. He was low. Sucks! Had a snack. Barely bolused anything. Went to bed. Came down stairs about a half an hour later. Tested. 2.4 (40ish) WT???? He had pizza for supper. He is supposed to go high! Nah, diabetes doesn't work that way. The Gods are against me. By the time I could go to sleep I was too wired to do so. I was awake until 2am and back up at 6. Liam on the other hand stayed between 6.4 and 7 all night long!!!! Have I said how I hate this disease this month??? September
September 29, 2007
Today I
was playing with pictures which led to a variety of
thoughts. In the first case I was looking for a picture for
a friend. She is looking for pictures of people with
diabetes (type 1 or 2) for a presentation she is doing at
the CDA National Conference next month. (If you would like
to be a part please contact
sandy.strussATpeoplewithdiabetes.ca). I sent in a picture of
Liam from this summer and she also wanted a picture from
diagnosis. I didn't take a picture in the hospital and
there were no pictures of interest from just before he went
into the hospital. I found the pictures I did take when he
got home. It killed me. So young, so innocent, so frail.
Over seven years later he is vibrant, silly and very much
alive. With infusion set still attached to my chest, I called my son. We played the Sesame Street game "which one doesn't belong". He played better when he was three. He looked to see what he had done. He was stumped. HIs older brother was laughing so hard he was holding his stomach. Liam finally looked straight at me and it hit him. He realized that I was wearing a lovely pink infusion set! It was now his turn to laugh. Its nice to know that these things amuse my kids! September 27, 2007 Tonight I had my boys watch the movie "Pay It Forward". I loved the movie and more so the concept was incredible. My kids hated it. It was one of the first times they had seen a movie that ended with the main character's death. They through it was a terrible reward for doing good but that's their theory. For me, the movie takes me back to when I first started to fight for the DTC. I thought I was pretty well alone. I found a wonderful friend who held my hand. I was determined and through this site and others asked for help. My first indication that we were making a difference was when I heard that the Finance Department was being inundated with requests for information on this thing called the "Disability Tax Credit." They were not pleased. I was overjoyed! People were coming together. We were making a difference. Occasionally I will sit here and have my own little pity party because that is what overtired parents do right? Okay maybe just me but I digress...I wonder if I am making a difference. Am I really helping anyone?? A little after those moments, new moments occur. I get an email from someone who gets it. I hear from someone who "lives there". I talk to a doctor who is amazed by what I have achieved. I speak in front of a group and realize that I know what I'm talking about! I am asked to discuss this issue on the radio or in print. I have someone come up to me and say "You're Barb!". That's the weirdest one. Yes, I am. I am just me. I am just a mom. I am just blessed or cursed to come from a family that was never known for taking a backseat. I can't stand seeing something that is wrong. I have to fix it September 26, 2007 I have said and note at the top of this page, that I welcome the rantings of others living with diabetes so it is my pleasure to share with you the frustrations of a parent trying to help their son. People's ignorance about Type 1 diabetes and its therapies never cease to amaze me!... We recently
decided to look for life insurance for our diabetic son,
thinking that if we purchased now when he was young, it might
help him down the road. Needless to say we were declined but I
thought you would be interested to hear an Insurance agents take
on the subject.Keep in mind that this agent was a third party to
this application – my healthcare administrator asked her about
possible increase in coverage at work, and this is what she told
her: September 24, 2007 I know I am just a parent. What do I know about diabetes? I live with it each day. I sleep with it each night. I wake with it. Its in my purse. Its on my doors. I am just a parent. I can't possibly get it right? Maybe its lack of sleep but I have had one too many families frustrated by their support system. I don't understand why professionals are not more supportive. Why do they question the fact that a six year old cannot accurately read a meter or judge what to do when high or low? Why do they not understand the cognitive impairment that goes with highs and lows? They have to know the fundamentals but some don't seem to be able to cross things over put themselves in the families' shoes. It breaks my heart to see families struggling to get T2201s signed. It kills me to see young children not getting support in schools. It tears me apart to see people living with Type 1 diabetes still being put on two needles per day. September 23, 2007 The kid may have reached double digits but the memory has NOT improved! I had made adjustments for all of the insane lows we had been dealing with and then Liam went to Dad's for the weekend. I had his logbook and spare strips all set out for him to take with him. When he came home, I began looking and seeing more lows. More adjustments! I just can't win. As I made the last entry in my logbook, Liam tells me that he will bring me a copy of his log stuff from Dad's on Wednesday. Huh??? I looked at the dates and sure enough, this was old data! I asked him where the logbook was. He said he never brought it. I said so the logbook and test strips stayed home while you left? Yep. Let's just say I was not even close to being impressed! September 21, 2007 Someone take me away PLEASE!!! I can handle lows that make sense. I can handle a low that I created by guessing carbs. I hate, hate, hate lows that make no sense. I hate, hate, hate, hate lows that don't follow any pattern. Yep, that has been my week. Lows at school. Lows at home. Lows at night. I made some adjustments tonight that hopefully will help at school. Diabetes is really sucking at the moment. I am getting tired of this. The only thing is that I get a break. I don't have to take it everywher I go. Liam does. I hate this. I wish I could believe in a cure. I wish that this was one of those "illnesses" that you take an aspirin for and it would go away. I know but then what would I do with my time? No website, no advocacy work. Gee wouldn't I be bored? NOT! Okay, enough whining for one night. Back to it!!
September 20, 2007 Like
many, my family went to their first CWD conference this summer.
We had a blast and look forward to doing it again. September 19, 2007 Where is my bed? I want to crawl back into it and not come out for a long while! Liam's low yesterday was at a completely different time from the low the day before so no pattern, no clues, nothing that can be done at the moment. Not happy. We have homemade pizza for super. Liam boluses (yeah he remembered). He tells me a number, presses okay and then I ask if he used "pizza". He gives me that blank look and I know I am in trouble. We stop the bolus and bolus a guestimate under pizza. The bad news is that I am off to a meeting at the school. Fingers crossed, I pray that we have this figured out right. At school I am pleasantly surprised to hear that Liam's attitude towards his diabetes and care have changed a lot. Its not a fight or chore to get him to test. Its just part of his life. Sad but wonderful. I wonder if seeing all of those other children testing and bolusing in Florida had an impact? I don't know but I am grateful that something is beginning to sink in. I
come home after spending way more time in school than
anticipated and get my boys ready for bed. As I get ready for
bed, Liam is 4.8 (under 90). I give him one tablet and head off
to lala land. I wake up around 3 and head up to test him. He is
3.8! WT????? OY, okay, more tablets, wait and pray I don't fall
asleep. I don't sleep, I toss, turn and prepare newsletters and
meeting agendas in my head. I test him again. 3.8. Now I want to
scream. I want to cry. Why can't I get some sleep?? I know I
won't "catch up". It never works that way. By 4am he is up to 7
(126) so I can sleep. In the morning...who knows because he ate
half of his breakfast before realizing that he had to test!!
Some things just don't change overnight! September 18, 2007 Well he went and did it! Liam joined the softball team. It had to happen but I was nervous the entire time. I decided to drive down and pick the boys up after practice. Its not a far walk but what if Liam was low?? It turns out he had been low!! He was a whopping 2.8 (50ish) at 2:30 and got up to 4.7 (75ish) by the time baseball started. On the plus side, his classroom teacher went to practice with him and told the coach to watch for him. When Liam got in the car I had him test right away. I looked at this huge bottle of hand wash and asked why he had taken my big bottle from home. He hadn't. It was his teacher's! What happened to the two I sent to school? Beats me. OY! Little boys!! So he tested and sure enough he was a little low for walking home. I am glad he decided to get involved but I have such a hard time letting my baby go. His teacher says he is getting more independent in his care but he is still my baby!!
September 17, 2007 Life is a roller coaster. Put diabetes in the mix and its like living on my son's favorite roller coaster "Duelling Dragons". Personally I hate roller coasters. I like nice smooth rides. How the heck did I end up on this ride? There are some interesting curves thrown in though. Last night was a prime example. I got caught up in a conversation last night and was late getting to bed. I tested Liam and he was okay. He was a little lower than I like but he had been going up so I was pretty relaxed. I had changed his basal and did want to double check him at 4am though. I did my usual...went to sleep and assumed I would be awake a thousand times during the night. I was wrong about one thing. I wasn't awake a thousand times. I did wake up at 4am exactly however. Liam was okay, a little high but not as low as he had previously been running. The morning was good. His numbers at school were great considering he ate pancakes for breakfast. They always send him high. Today was a new twist on my lovely roller coaster! By lunch time Liam had dropped to 2.9 (50ish) and it took his teacher a good hour to bring him up--glucose tablets, lunch, only 3.3 then more glucose tablets. The ultimate result? Well he went high of course! Home he comes and he has dropped to 13mmol. He heads out to play with a friend and comes in for dinner at 4.9. Oh the joys!! I just can't wait to see what tonight and tomorrow bring! September 15, 2007 Its taken a little bit but school is in full swing and so are the calls of families having problems. Its sad really. Why can't people get the help that they need for their children? They aren't asking for the world. They are asking what the law requires, that the schools watch their children in the manner of a caring parent. Why should that be so difficult? Why should doctors oppose adequate care in schools? Why should young children not be afforded the care they need? Why do our babies have to know how to test their blood and understand what it means when adults won't be bothered? So many contracts, so many fears. Why do your children have to suffer? Its just not right. We continue to fight and we are getting stronger. There are more and more families getting the help they need. There are more and more families coming together to educate their schools. There are more and more families supporting one another. We are making a difference. Don't give up. We will make it better for all of our children! September 11, 2007 Today my oldest son starts his very short softball season. He loves the game, has improved annually, and I wish he could do it more often. Liam is now old enough that he could join too. He hates baseball. He used to play catch but now doesn't even like to do that. If he were my older son, I would be pushing him to at least give it a try. There are not a lot of activities for kids in our area and this just might be fun for him. This is Liam however and I am letting him decide. Why? Because I am scared. Pathetic huh? If he decides to play, I will have to face my fears but if he doesn't I will breathe a quiet sigh of relief. The people he would be playing with (except his brother) know nothing about diabetes. Will his pump get hit? Stupid thing to worry about. Professional baseball players are playing with their pumps on! Will he remember to test? Will he bring his kit? Will his coaches understand him being low? If he decides to come home and ride his bike around the yard, I know he is safe. Its not fair but its what runs through my head. I just got a call from my oldest son (followed by an email from his teacher). His class can go to the other side of the province for the weekend to attend a French Festival. They leave Friday and come back on Sunday. When I heard this my only thought was...man this kid is costing me a lot of money I don't have this month! His braces get put on. He has his regular trip to the optometrist. There is a trip to a dental specialist of some sort to have wires put on an impacted tooth and the cost of the procedure as well as the drive to and from on a now regular basis. Now I have to pay for this weekend excursion but I will not deprive my kids so of course he is going. After I said yes, I then thought of Liam. What if it was Liam asking to go? I would have to say yes too but I would be having a stroke the entire time. I would be even more concerned with the teacher in charge. We would be having a meeting. I would find Liam a cell phone for the weekend. I would be a bundle of nerves until he came home. Its crazy what diabetes does to you. To your thought patterns. To your fears. I hate that I think of these things when it comes to Liam and yet when it comes to Brandon I simply think of what a great experience it is for him. Its not fair. Its diabetes...and a protective mom. September 10, 2007 You know that you live in a house with diabetes when...
September 9, 2007 Last night I was out at a club and I saw a lady that I know has Type 1 diabetes. I noticed that she had a large handbag. My heart broke a little more. I knew that she was carrying her needles, insulin, strips, lancet, and probably glucose. I was able to leave Liam's stuff behind. There is stuff left in my car but she had to bring it with her. As the evening progressed it appeared she was having a good time with her spouse. I couldn't help but worry when she was dancing...did she test? Would she go low? Darn! My glucose is in my car. Once a parent of a child with diabetes no child is safe no matter what the age :-) There really was no reason to worry about this person. She is very responsible and very smart but that mom thing just can't help but kick in no matter what their age is. September 8, 2007 What are the chances? We have been using the FreeStyle Mini for years. Our backlight died. The trauma was unbearable. Thankfully I went to the Toronto Focus on Pumping conference and was privy to the pre-release of the colored One Touch Ultra Mini meters. We got a black one (for school) and a pink one because real guys wear pink! The pink one stays at home. The Freestyle has moved back in the line a little but still gets used. At night I grab the pink meter. Its cute and I am easily amused! As I am wondering at 2am to test my son, I decide that I should really check the coding on the machine. Liam and coding is hit and miss. I have now seen first hand the differences in readings when you don't code properly. I am a little more anal about the entire thing now. The Freestyle has been code 2 for about 500 strips at this point. No kidding! I don't have a clue why. We even bought strips in another town and they were still code 2! What odds? So I look at my pretty pink meter and check the code on its strips. Well at 2am its pretty easy to blow my mind and this did...it was code TWO!! Cool! And Liam even had it set right. Its the little things in life that really make it worth while being up at 2am...well something has to make you feel good about moving at that time of the morning besides the obvious...I am keeping my kid alive. Oh the joys of diabetes!! September 5, 2007 Why red? Because its a "red letter day". Its the day that my youngest son turns ten. With ten come a lot of responsibility he has been told. He will never again be in the single digits and now that he has joined those of us in double digits, he has responsibilities. He is now to remember his lancet. He is now to remember his kit. He is now to remember his glucose (he forgot yesterday and was low. His response was "Mom, do you have glucose?" I said yes. He replied "Good because I'm not ten until tomorrow so I am allowed to forget for the last time today!" Again, I can't help but reflect the difference in this birthday from the first one after diagnosis. That year we ate at a very specific time. He had angel food cake with raspberries. That still sounds good to me, but this year he chose the black forest cake, glazed ham, caesar salad, and scalloped potatoes for lunch. At four he heads off to Dad's to eat pizza and more cake. Who would think this of a child with diabetes? I certainly didn't just seven years ago. My baby is growing. He is squirky. In love with his new Wii system--we will be testing a lot with him boxing on that thing! He is full of life. He hates to be low. He hates ketones. His pump is now his "Mini Me" and still as vital to him as ever. My baby is growing up...maybe he will even remember to test and bolus on occasion without Mom giving him a hard time! He is 10 now :-)
September 4, 2007
In response to our September 1st post....I
just read your log for September 1. You’re right, diabetes does
suck. It doesn’t take vacations and doesn’t care if you are so
tired you are seeing double. Thank you so much for this!!! I have received a lot of support after my post about Liam's high and my mistake. Thank you all so very much for kicking me back on track! September 3, 2007 I had asked a few days ago how people felt we should improve health literacy in the general population. How do we get people to understand? How do we empower them? How do we get them to understand what their health professionals are telling them? A friend responded with a great idea. He suggested that we need more public service commercials using the KISS method (Keep It Simple Stupid). Its very easy for those of us who have been entrenched in this "stuff" for years to take the basics for granted but many are not taught them basics. They just don't know through no fault of their own. He brought up a great idea. I am really going to work on the concept for a bit. What can be done? How is the best and most effective message to be sent? All great ideas but hey, we are full of fabulous ideas :-)
September 2, 2007 I sat here
tonight and realized the one thing that comes from diabetes.
There really is a positive and incredible thing that I have
derived from this disease. I know I have said it before but I
also do think it can be said enough. That is the incredible
friendships I have made. This long weekend has not been the
best. I have been kicking myself repeatedly for Liam's high. I
have been able to really fuel the pity party as weekend plans
fell apart through no one's fault but nonetheless, it allowed me
to add my "whine" to my party :-) I was doing great at feeling
miserable and then an email came..."Barb are you home?" With
that came a great conversation with a wonderful friend for about
an hour. At the end of the conversation I was alive again. I
remembered the important things...great friends that see you
through. People that care and that you care about all brought
together in their hatred of this disease. We are all stuck with
it in one form or another. We all have to deal with it in our
own way, but we can share with each other our trials, concerns,
and our victories. For that, I am so very grateful so once
again...Thank you!! You keep me going. September 1, 2007 And I just want to sit down and cry. Its great to blame others when your child is high and spilling ketones. I could even say that because he had been ketonic in the past month is why he so easily began spilling ketones today but that is too simple and too petty. I screwed up and my son pays the price. Someone told me once that every time their child is high they can hear another small blood vessel destroyed--a kidney shutting down. I feel that way today. What have I done????? What kind of a parent am I to do this to my baby?? It was innocent enough but aren't all disasters at the beginning. Liam was high last night. We had done a site change and I was watching some basal changes. He was okay when I went to bed. He began to creep up by 2 am. That was one of the times I was looking at so I simply made a correction and planned to do some fixing in the morning. I couldn't sleep. I tested again in an hour. He was still high and I corrected again. He wasn't in the 20s (360+). He just wasn't in range. By 4am he had gotten up to use the washroom. Okay, he is still high but again, this was a time period that was off. I corrected again. Big mistake Mom! Three corrections via the pump?? What was I thinking? It was 4am. I wasn't thinking. I should have checked his tubing. I should have injected. I pushed a button and went back to sleep. By 9am he was 16(290) and throwing up. Yes a lot of four letter words were swirling in my head. How could I have been so stupid????? Ketone test--like we needed that one! Yep, ketones! More four letter words in my head and a few more profanities directed at myself. How could I have been so stupid??? I tell Liam we are going to change the site (after I have now injected him to the nines with a pile of insulin--thank you Henry for telling me to not be scared and send him low). He suggests that we first check the tubing for air. Well, he may have been high but my kid was a genius. There, looking as obnoxious as can be, was a huge air bubble. Now I am an even worse parent because after almost four years I have not mastered the demise of ALL air bubbles and my son who is high can figure this out. Its been close to three hours now. The ketones are gone. I haven't brought him over to Dad's yet because I want to make sure that everything is okay first. If he does need a site change I would prefer it be done here. I am still sick to my stomach. I want to scream at this disease. I want to sit and cry because I screwed up and its my son who is paying the price. I want this to get easier. This isn't something that a CGMS would help--I had the higher readings and was just blindly correcting. Its something that I have to take responsibility for and let me repeat...I hate it!!!!!! (Yes I am stamping my feet and banging my fists on the ground) Diabetes completely and utterly sucks!!!!!!!! August August 31, 2007 I looked beside my bed and noticed no less than 3 lancets sitting there. Do you think that they would protect me from a would be attacker? If you looked closely at them you would think they had already done that! Each clear cap is filled with blood splatter. If you look at the needles, you will see blood dried and dripping. I should have taken pictures and used for Halloween! Its definitely time to do some lancet changing and some cleaning. I know some people change lancets once per year. Some people change after every test. By the looks of my room we need to do changes a little more often! Oh the fun of life with diabetes! August 29, 2007 The joy of children is that you just never know what is going to come out of their mouthes. My boys are no exception and what they have to say will some days just boggle my mind --I know, like that takes a lot :-) but anyway....Liam was low yesterday. He tested, he had some "real" pop. He went off happy. I ended up on the phone in a meeting and didn't get a chance to remind him to retest in 15 minutes. The meeting was relatively short and when I got off the phone I asked Liam to test. I said that he should have retested earlier because he was low. From upstairs he informs me that he didn't need to test because he was in range. He could tell. He didn't feel low anymore. I said perfect! We will patent you and make a mint! No one will ever have to test again because Liam can tell his bg level without a meter. He proceeds to come downstairs and sure enough he is low! I do the "I told you so" Mom thing to which I get..."Mom, before I came down the stairs I was 4.2(75). Walking down the stairs made me low. That is why I am now 3.7(65)" Always an answer!!! Kids! August 28, 2007 When I first heard about Continuous Glucose Monitoring Systems (CGMS) like the Real Time System by Medtronic, I was sure that Liam would not be interested. I was shocked when he said...less testing? I'm in! I have since been following the technology and plan to get him one at a later point. The reason is that I am waiting for the Navigator. For me, the features are superior. Others will argue that the Real Time is better and I welcome the arguments. That is beside the point. I then began to look at Liam's teen years. It has been uncovered that the pancreas not only produces the hormone insulin which we all know we need for digestion of food but the hormone amylin. This hormone, found in the product symlin, impacts how quickly food moves through the stomach. In the US, many people, in attempts to counteract post meal blood gluco |
