Awareness

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

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

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

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

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

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

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

Letting go

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

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

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

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

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

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

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

Where were you?

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

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

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

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

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

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

The Towel

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

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

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

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

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

Thank you so much for reminding me of that!

Back to school

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

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

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

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

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

INSERT PICTURE

If there is an emergency or questions regarding Liam’s care please contact
Barb at 6xx-xxx6 (home) OR 6xx-xxx0 (cell)
Liam has type I diabetes. Diabetes is a chronic, debilitating disease that can affect every organ system in the body. Type 1 diabetes occurs when the body’s immune system is triggered to react against and destroy the insulin-producing cells in the pancreas. Without the hormone insulin, the body cannot use glucose (sugar to fuel the cells of the body). As a result, the level of glucose in the blood will rise, causing symptoms. To compensate for the lack of natural insulin, Liam is currently using an insulin pump, which is attached to his body 24/7. He must never remove it. This pump does not regulate his blood glucose levels; it’s just another way to deliver insulin into his body. His Blood glucose levels can still go high or low.
Low Blood Glucose…This is an emergency situation and must be treated immediately!!!
Low Blood Glucose Symptoms
Grouchiness, shakiness, sweating, fast heart rate, pale skin, dizziness, tired or falling asleep, sudden moodiness or behavior changes, difficulty paying attention, or confusion.
If Liam exhibits any of these symptoms he may not be able to care for himself. He MUST be monitored and CANNOT be left alone. His thinking will be impaired as the brain is being robbed of vital fuel to function. He has too much insulin in his system and is in need of glucose right away! Liam has glucose tablets with him and will also have a supply of sugar in his red emergency kit. If he runs out of any of these supplies please ensure that I know to replenish them. If you run out and he needs glucose any sugar or sugar product can be used—spoonfuls of sugar, or hard candies for example.
What to do?
If Liam tests and he is below 4mmol, he must immediately have 3 glucose tablets and retest in 15 minutes. He CANNOT be left alone during this time. If his blood glucose level does not go up in 15 minutes he must have more glucose and retest again in 15 minutes. Repeat until he is over 4mmol. IF HE IS BELOW 4 mmol BEFORE GYM OR GOING OUTSIDE HE CANNOT TAKE PART IN THE ACTIVITY UNTIL HIS LEVELS REACH A SAFE LEVEL. A “safe level” before physical activity would be defined as any reading over 6mmol.
If he is under 4mmol before any exam, he is not physically able to take this test and it must be rescheduled when his blood glucose levels are above 4mmol. When he is “low”, his brain is starved of fuel and he will not be able to think or function properly.

High Blood Glucose…this can be a serious situation that can quickly become an emergency.
High Blood Glucose Symptoms

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

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

Is it just me?

Everywhere you turn there is a hype about the latest boy band….the Jonas Brothers. They are exceptionally popular in the diabetes community because one of the boys has Type 1 diabetes and has been very open about it. I understand he wrote a song about it. He has spoken in front of Congress about living with the disease and he is a spokesperson for Bayer glucometers.

This is not the only celebrity to provide a face to diabetes and I am all for as much awareness and publicity as we can get. I recently read an article where this young man in particular states that he has to test his blood 10-12 times per day. Its great to see people discussing the “real” aspects of this disease. Another performer has told audiences about going low when performing and not knowing how to play his instrument or the words to his songs. This is real. This is what diabetes is all about but……you know that there had to be a but.

For me the “but” is but they don’t live in the real world. In some cases they may have grown up in the real world but for this young Jonas, he was pretty famous soon after his diagnosis (or perhaps he was diagnosed after becoming famous I am not sure). Being famous did not and does not mean that he is immune from the hassles of testing, injections, and carb counting but it does mean that one very large burden to care is lifted. There is no barrier to access of devises or supplies. They either have more than enough money to purchase the best care there is or they have companies lining up wanting them to use their products so that they can be used as part of advertising campaigns.

That bothers me. Its wonderful to make people aware of the disease. Its fabulous to get out there and lobby for increased funding for a cure. What happens to those who are living with diabetes now however? What happens to the families struggling to buy test strips? What about the families who cannot afford to pump? What about the families who cannot even dream of being able to afford a CGMS? What about the families struggling to have enough insulin for their loved ones?

I know celebrities cannot do everything but I tend to feel that they don’t live in the real world. They can show what a person living with diabetes can achieve. They can do anything if they work at it and stay healthy. That is a fabulous message but I guess I have spent too much time with people who struggle each day to afford to care for their disease. My concern is with people who have to choose care for one child over the other. I worry about those who choose to let their own diabetes care fall by the wayside so that their children can have better care.

I wish more could be done to bring the real struggles of diabetes to the forefront. I wish people could understand the real cost to families. I wish people could understand the emotional as well as financial toll this disease takes. The stress, the frustrations, the fears…those are the real issues of diabetes as I see them but I don’t get paid nearly as much as the Jonas Brothers or have an eighth of their fan base.

Getting Ready for School

Back to school. I actually don’t like this time of year. I love the fall colors. I love new school clothes. I love new books and finding cool pens. I hate the high costs and the fact that my kids seem to have grown out of absolutely everything they owned in a period of two months. I hate that they need more and more costly supplies each year and the stuff I had from last year is passe. I hate schedules and getting up at a rigid time for school. I hate lunches, snacks and carb counts.

The thing I really hate is sending diabetes back to school. I have been lucky. I have a great school. I have a supportive staff and principal. I have educated them well but this year is different. I have educated new staff members before. I have made it well known that I will tolerate nothing less than the best of care for my child in school. It is what he receives at home and therefore it is a must at school. This year is different however because Liam will be in grade 7. He is older. He is doing more of his own care. He has begun to take charge of his diabetes. He can test on his own, figure out bolus, and decide what to do about highs. He will also be involved in more exams and other activities that will test his independence and his teacher’s knowledge of the disease.

We have an understanding with the principal that if Liam is too high or low, exams that will impact his grades will be rescheduled. I now have to ensure that his new teacher will follow this rule. I have to get him to understand how serious this disease is. I have to teach him to recognize when Liam is “off”. I hate doing this and I am in a supportive environment. It kills me when I hear from parents who don’t have this support.

I have to contact the principal to set up a meeting with him and Liam’s new teacher. We have to go over the rules and information. The school will see more new staff this year so we also have to set up a time for a staff in-service. I have to redo old information sheets that I haven’t had to worry about for 3 years. I have to fill up supply boxes. I don’t want to do it. If I don’t do any of these things will it make time slow down? I guess not. I should do this. I will get to it. I have another two weeks. I will do this. I will.

Back from Vacation

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

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

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

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

Random Thoughts

I have not written a lot this summer. We have been pretty busy with family, friends and enjoying some wonderful times. Just keeping up the website has been enough along with this so the blogging part has dwindled but we will soon be completely back on track.

Today I had to go to see my family doctor. As I was waiting for my turn, I happened to look at a magazine cover. It showed Julia Roberts dressed as a bride for the movie “Steel Magnolia”. In all of these years, I have still never seen the entire movie. Actually I have no great desire to do so either. I know many are big fans of the movie but its just not my type of movie. Despite that, I do remember that the Julia Roberts character had type one diabetes. She had a low during one part of the movie and was very combative when her mother tried to get her to drink some orange juice. As I sat in that office, I began to put myself in their position. I could see life without testing. I could see life with Liam simply trying to guess if he was high or low. I could see complications by the time he was 20. I was so very grateful that if my son had to have this horrible disease he did so now.

We have seen our fair share of changes in technology. When he was first diagnosed the blood sample covered his small finger and we had to wait over 30 seconds for a reading. With a toddler I can tell you that 30 seconds is an eternity especially when you are wondering if they are asleep because of a low or because they were tired and needed a nap.

We started out with ketostix and now will only use Precision blood ketone test strips. In the beginning we only had one meter, now we have a huge collection. We used to test 6 times per day and now that will only get us through half of the day. A continuous glucose monitor was something that you could only get from the hospital and the readings had to be interpreted by the clinics. Now we are impatiently waiting to be able to purchase one that stays attached to him 24/7 and gives real time readings.

Its amazing how things have changed. We still don’t have a cure but we have a lot of wonderful technology that allow us to really monitor how the body reacts. Personally I still have a long ways to go before I would consider myself a great pancreas but with the help of such wonderful tools, I at least know that I am definitely doing the best job that I can.

Concert with diabetes

Going to your first outdoor concert with your children can be pretty interesting to begin with. You have hours of standing on your feet, unpredictable weather, and being herded like cattle to look forward to. You know that you have to pack as much water as you are allowed. You will have to drink that water with care and caution because washrooms will not be easy to get to or return from. You do not want to have to move for food or any other luxuries once you reach that perfect spot to watch your concert acts from.
When you bring diabetes along to an outdoor concert you have a few new worries. What if he is high? How am I going to get extra water? I spent all of this money on a concert and getting here, will peeing mean that I will miss the bulk of the show? What if he is low? Will I have enough glucose? Will they allow me to bring in snacks? It says “food for medical purposes” but will I have to fight to make them understand? How will we reach a meter when we are stuck shoulder to shoulder with no room for any movement? Will the insulin go bad if there is a lot of heat around?
I had these and many more questions going through my head before heading off with my boys to see AC/DC at an outdoor venue. Liam was telling everyone that he was going and Mom was scared to death that there would be problems. There was no fast pass here. There was just going to be us and 70,000+ other people. I had water. I had snacks. I had meters….two in case one went bad somehow. I had syringes. I was ready to fight with security to get my stuff in. I was set!
Security barely looked at me once I told them that I had food for diabetes. Liam had his one space closest to the gate. No one pushed him or crowded him. He was able to test with ease…the rest of us were shoulder to shoulder and shoved like we were no one. He started out a little high so we corrected half of what his pump suggested. I knew that we were not going to be eating until everything was over and that walking to the concert area as well as standing for hours was going to burn off a carbohydrate or two. Mom was right. He was in range most of the night. He was never low. He was tired. He had the experience of a lifetime. He was in a crowd bigger than anything any of us have ever experienced in such a small space. And more important still? He got to see AC/DC and can continue to brag to all of his friends and family!