Its funny how everyone thinks of the A1c test if it is the true measure of your ability to be a pancreas. What is supposed to be a guide becomes a ruler on which to judge if we have "passed" or "failed" in our ability to beat the diabetes gods for the past 3 months.
Liam's A1c was done about a month ago. We finally got the results yesterday. I knew I would fail. I knew I had been a bad pancreas. I knew that I wasn't logging. I knew that Liam not testing and me not being on top of it all would come back to bite me. I also knew that my son had begun puberty and hormones were now seriously messing with our ability to get any sort of handle on control.
I failed. By my standards I failed rather miserably. I believe it is the worst A1c we have had. Yes it could have been worse but I still feel that I have failed. I know there has been a burn out factor and still the good old "mommy guilt". I am burnt out after all of this time and yet my child will have to carry this burden for much longer than I will. Who am I to burn out so quickly?
Good or bad, Liam has a much more lax attitude towards his disease. He takes things as they come, corrects as he goes along and does not seem bothered by much. Mom takes each high or low as a personal failure and over the past few months it has been worse than ever. I have become my own worst critic. That is not a good thing.
I have had to step back and look at the advice I give so many newly diagnosed parents...look at the world 4 hours at a time. If you have a good 4 hour period be proud and know that you were a good pancreas. If you get a longer stretch with good numbers then do a happy dance. You were amazing! We have seen good stretches. I have made good calls but I am still sending myself back to school. Time to dig out the John Walsh "Pumping Insulin" books and make some new notes. I haven't sat down with any of them in a few years and I think I need to start fresh. Its time to clean out the cobwebs and look at things as if I was just starting out. Its easy to get complacent. You cannot let diabetes rule your life but complications are real and a good respect of the "gods" you are playing with is not a bad idea either.
Back to the books!
The ranting of a mother and advocate for Type one diabetes. The founder of www.diabetesadvocacy.com welcomes you to journey through life with a son with Type 1
Wednesday, December 2, 2009
Monday, November 30, 2009
SupperNanny Tackles Type 1
I don't think I have ever watched the show from start to finish. I never record shows anymore and I don't know when I have had people go through so much trouble to find me a link to watch a TV show but here you have it...a bunch of firsts for me and a big Wow!
For those who never watch this show either, there is a TV show on called "Suppernanny". She is a British lady who comes in and straightens out your family when you can't do it on your own any more. In 41 minutes she fixes your marriage, makes all your children angels and teaches everyone how to get along with each other. This is why I don't tend to watch it on a normal day. I am just not into shows that make life so black and white and pat. I had however heard that she would be going to help a family who had a child with Type 1 diabetes.
I don't know if all diseases are like this, but those of us who live with Type 1 diabetes in our lives are harsh critics. I think it has to do with all of the misconceptions that we deal with on a regular basis. We are so used to defending and teaching that we are quick to judge when Type 1 diabetes is portrayed in the media. In our defence, a lot of media outlets do make horrific mistakes but still we are a tough crowd to get something past.
Supernanny had received a passing grade. No rave reviews now but most parents seemed to be impressed that she went in with a good general knowledge and was able to separate the disease from the child's behavior. Now I was really curious! I had been traveling when it was originally aired but no fear because these things are always to be found online. I received three links to the show before I was given one that was usable outside of the US! Finally this morning I was able to sit down and watch it.
I was impressed. I still will not be watching the show but for a change the focus was on Type 1 diabetes. They didn't fuss too much about the little boy who loved to pound on his sibling. They did focus on Mom's fear that her son would die from Type 1 diabetes just has his grandfather had. They didn't focus too much on the big sister who was sick and tired of cleaning up after two obnoxious little brothers. They did focus on the fight to get the child with Type 1 to eat all of his food. They showed blood glucose testing. They showed injections being injected. They showed carb counting and insulin calculations. They showed a child who refused to eat and threatened to vomit. They showed a child who could take 2 hours to finish a meal.
Now if Jo the Supernanny was also a super CDE then she would know to put the child on a different insulin regimen and no longer worry about feeding the insulin except in the case of lows. She would then be able to give the parents the power to say "If you don't want to eat fine but you won't be getting anything later" and mean it.
We are coming closer to 10 years since diagnosis with each passing day and some of what this family was dealing with I remember as if it was yesterday. Liam was 2 and this child was 5 but still both of them used food to control a situation that was well beyond their control. Liam would keep an entire meal in his cheek without swallowing. He would finally swallow only to vomit it all back up. He would take 2 hours to eat a pop tart. I would end up feeding him almost anything just so that he had the carbs to cover the insulin that was already in his system.
I will remain eternally grateful for the incredible support we had both in his diabetes clinic and through some wonderful people I met online. They finally got me to click in to the fact that if I didn't inject him with the fast acting insulin he would be okay with minimal food. We were using NPH at the time and Humalog. As I learned how the insulins worked, I began to have power as a parent again. I could allow him to leave the table without touching his food and not worry about him passing out in 5 minutes. I was free to discipline him again and his doctor encouraged it! It was so liberating.
As you know if you have read my rantings before, I still get frustrated. I still get worried. I still have fears. I have to learn to move past them so that my soon to be teenaged son doesn't continue to learn how to use those fears against me. We will be okay. He has a different way of taking care of himself but he is doing a good job. Together we will get through life and life with diabetes. One day he will be a confident, resourceful young man who just happens to have a life-threatening chronic illness.
For those who never watch this show either, there is a TV show on called "Suppernanny". She is a British lady who comes in and straightens out your family when you can't do it on your own any more. In 41 minutes she fixes your marriage, makes all your children angels and teaches everyone how to get along with each other. This is why I don't tend to watch it on a normal day. I am just not into shows that make life so black and white and pat. I had however heard that she would be going to help a family who had a child with Type 1 diabetes.
I don't know if all diseases are like this, but those of us who live with Type 1 diabetes in our lives are harsh critics. I think it has to do with all of the misconceptions that we deal with on a regular basis. We are so used to defending and teaching that we are quick to judge when Type 1 diabetes is portrayed in the media. In our defence, a lot of media outlets do make horrific mistakes but still we are a tough crowd to get something past.
Supernanny had received a passing grade. No rave reviews now but most parents seemed to be impressed that she went in with a good general knowledge and was able to separate the disease from the child's behavior. Now I was really curious! I had been traveling when it was originally aired but no fear because these things are always to be found online. I received three links to the show before I was given one that was usable outside of the US! Finally this morning I was able to sit down and watch it.
I was impressed. I still will not be watching the show but for a change the focus was on Type 1 diabetes. They didn't fuss too much about the little boy who loved to pound on his sibling. They did focus on Mom's fear that her son would die from Type 1 diabetes just has his grandfather had. They didn't focus too much on the big sister who was sick and tired of cleaning up after two obnoxious little brothers. They did focus on the fight to get the child with Type 1 to eat all of his food. They showed blood glucose testing. They showed injections being injected. They showed carb counting and insulin calculations. They showed a child who refused to eat and threatened to vomit. They showed a child who could take 2 hours to finish a meal.
Now if Jo the Supernanny was also a super CDE then she would know to put the child on a different insulin regimen and no longer worry about feeding the insulin except in the case of lows. She would then be able to give the parents the power to say "If you don't want to eat fine but you won't be getting anything later" and mean it.
We are coming closer to 10 years since diagnosis with each passing day and some of what this family was dealing with I remember as if it was yesterday. Liam was 2 and this child was 5 but still both of them used food to control a situation that was well beyond their control. Liam would keep an entire meal in his cheek without swallowing. He would finally swallow only to vomit it all back up. He would take 2 hours to eat a pop tart. I would end up feeding him almost anything just so that he had the carbs to cover the insulin that was already in his system.
I will remain eternally grateful for the incredible support we had both in his diabetes clinic and through some wonderful people I met online. They finally got me to click in to the fact that if I didn't inject him with the fast acting insulin he would be okay with minimal food. We were using NPH at the time and Humalog. As I learned how the insulins worked, I began to have power as a parent again. I could allow him to leave the table without touching his food and not worry about him passing out in 5 minutes. I was free to discipline him again and his doctor encouraged it! It was so liberating.
As you know if you have read my rantings before, I still get frustrated. I still get worried. I still have fears. I have to learn to move past them so that my soon to be teenaged son doesn't continue to learn how to use those fears against me. We will be okay. He has a different way of taking care of himself but he is doing a good job. Together we will get through life and life with diabetes. One day he will be a confident, resourceful young man who just happens to have a life-threatening chronic illness.
Sunday, November 15, 2009
November 14th is World Diabetes Day
Yesterday was World Diabetes Day and someone mentioned that people were saying "Happy" World Diabetes Day as if this was a happy occasion. Some noted that it was a happy occasion simply because it was a day that they did not feel alone. It was a day when others would recognize the existence of a horrible disease. Personally I did not call it a happy day but did feel that it was a day to celebrate. November 14th is chosen because it is Sir Frederick Banting's birthday. As one of the men credited with the discovery of insulin, I am more than happy to celebrate his birthday. Like too many others, I have seen what a person who lives without insulin can look like. That is just too terrifying not to celebrate the fact that this wonderful man made such an incredible discovery. It is a day to celebrate the fact that my child LIVES each day because of that isolated source of external insulin.
Someone suggested that this is just another day. We live in isolation. People do not understand the hardships no matter how much many of us try to educate them. I agree that most people don't get it but every time just one person tries to learn. Every time one person asks just one question to educate themselves, that is one more person that we have reached. It is one more person that we have given a glimpse into what our lives are like. It is one more person who can begin to understand and work beside us.
November is Diabetes Awareness month. I admit that this year I have not been as loud or as "out there" spreading the word as I have in the past. As someone once told me, we have to do this every day not just one month out of the year and that is something that I try to do. I continue to work to educate and make people aware...one person at a time is a very good start.
Thursday, November 5, 2009
Diabetes Marshmallow
This past week has been very full and very emotional. There have been many decisions on my plate and many issues floating around. Always front and center is diabetes care. I was lucky enough to have some wonderful friends to speak with and try to wrap my head around what could be expected of a 12 year old boy. In the process I was told that when it came to diabetes I was a softy. I let my own guilt and issues get in the way of my child's best interest. I had a friend read through my old blogs and suggest that I had just as many highs and lows as my son. It was suggested that I was weak. I was shocked. I have been called a lot of things in my life but weak was never one of them.
I decided to begin to read back in my old blogs myself and form my opinion of me. Well, first I have the utmost respect for anyone who wants to learn that much about diabetes and my opinions to spend the amount of time required to go through all of my old blogs. I have spent part of a day and have only managed to get through one year! Yes I have been distracted by a few other things but still to maintain that kind of interest takes a very special person and I feel very lucky to have that sort of a person interested and involved in my life.
But back to the point...was I really weak and soft? Well I still don't see myself as "weak" but I certainly am weak and developed very poor coping skills when it comes to diabetes care. Did I just admit that?? As I read through one year I realized that I took a very tough stance when it came to government. I have lofty goals that are commendable and that I still stand behind when it comes to getting everyone living with diabetes the best of care in school and throughout their life time. I am horrible when it comes to being strong with my son.
I was told by a psychologist that deals with this issue that I was allowing my issues with this disease to overshadow how I teach my son. In reading, he was so right. He gave me new tools to move forward with and funny but when I have started to use them I feel less powerless, less sad, and less pathetic. I have worked very hard over the past two years to overcome many personal issues and to be strong in myself. I have learned to relax and take life as it comes. Sadly I was not doing this with diabetes.
My writings are filled with "but he will have to live with this forever and I should give him a break". In conversations over the past week I have come to realize that I am not helping him in that. He does know how to "play" me. He looks at me with those puppy dog eyes and while I will never melt for anything else, I will give over and do whatever chore it is that he needs to do. In looking at how I have reacted to issues of forgotten meters, strips and testing--panic is my first mode of attack. This does no one any good.
We will see how I do when the next crisis hits but so far I have been able to be stronger and "just say no". Now that seems weird but I have seen the look in my child's face...I can get her to do this. It made me realize that I cannot do this. I am not helping him. I would not do his homework for him and I cannot do his basic D care. Funny, since I have made him more responsible and given consequences for not doing so he is much more on top of things. This may falter. He may test me and I may get frustrated but I am going to try to remain more calm. I read through crisis after crisis and funny but no one died despite my fears. The world did not crumble and life was okay...except for my own nerves. I was the only one damaged and that has to change...well I can hope and work on it anyway!
I decided to begin to read back in my old blogs myself and form my opinion of me. Well, first I have the utmost respect for anyone who wants to learn that much about diabetes and my opinions to spend the amount of time required to go through all of my old blogs. I have spent part of a day and have only managed to get through one year! Yes I have been distracted by a few other things but still to maintain that kind of interest takes a very special person and I feel very lucky to have that sort of a person interested and involved in my life.
But back to the point...was I really weak and soft? Well I still don't see myself as "weak" but I certainly am weak and developed very poor coping skills when it comes to diabetes care. Did I just admit that?? As I read through one year I realized that I took a very tough stance when it came to government. I have lofty goals that are commendable and that I still stand behind when it comes to getting everyone living with diabetes the best of care in school and throughout their life time. I am horrible when it comes to being strong with my son.
I was told by a psychologist that deals with this issue that I was allowing my issues with this disease to overshadow how I teach my son. In reading, he was so right. He gave me new tools to move forward with and funny but when I have started to use them I feel less powerless, less sad, and less pathetic. I have worked very hard over the past two years to overcome many personal issues and to be strong in myself. I have learned to relax and take life as it comes. Sadly I was not doing this with diabetes.
My writings are filled with "but he will have to live with this forever and I should give him a break". In conversations over the past week I have come to realize that I am not helping him in that. He does know how to "play" me. He looks at me with those puppy dog eyes and while I will never melt for anything else, I will give over and do whatever chore it is that he needs to do. In looking at how I have reacted to issues of forgotten meters, strips and testing--panic is my first mode of attack. This does no one any good.
We will see how I do when the next crisis hits but so far I have been able to be stronger and "just say no". Now that seems weird but I have seen the look in my child's face...I can get her to do this. It made me realize that I cannot do this. I am not helping him. I would not do his homework for him and I cannot do his basic D care. Funny, since I have made him more responsible and given consequences for not doing so he is much more on top of things. This may falter. He may test me and I may get frustrated but I am going to try to remain more calm. I read through crisis after crisis and funny but no one died despite my fears. The world did not crumble and life was okay...except for my own nerves. I was the only one damaged and that has to change...well I can hope and work on it anyway!
Saturday, October 31, 2009
Support
I truly am one of the luckiest people on the planet. About one year after my son was diagnosed with diabetes I joined the world of technology and "found" the Internet. I had been struggling for most of that year. I knew no one with diabetes. I was living far away from family. Life was hard in a lot of ways. I had a child with diabetes who hated to eat. I did not have a clue how to give him the insulin I knew he needed and keep him conscious. I was spending more meals in tears than not. I was at my wits end.
I searched for children with diabetes and it did not take me long to find my life-line. I found the Children with Diabetes website but more than that I found some incredible friends. I found people that would challenge me to do more...and I did. I found find friends who would help me when times were tough...and they were. I found friends who would cry with me when that was all I had the strength to do. I found friends who believed in me.
Over the years I have lost track of some of these people but many more have remained incredible friends. I have been able to give back to some people and hopefully be there for a few more. I learned about "Friends for Life". Those are people who are brought into your life because they are struggling to deal with the same chronic illness that you are. They have been there, done that...and guess what? We do have t-shirts!
As I posted the other day, my latest trial has been puberty and not testing. I went to my CWD email list and asked for advice from those who had survived the teen years and have such incredibly well adjusted young adults in their lives. Once again I found awesome advice, incredible support and just as importantly, I was able to open up a venue for others to express that they were going through the exact same thing and how they were handling things.
I wasn't alone and funny but even those kids that I thought were perfect had had their moments as well. As terrible as it sounds, that made me feel better too!
One of my friends provided me with extra support. She knew of someone who specialized in this issue. He had lived with diabetes for almost 50 years and was well versed in teen aged issues. He kindly called me and we chatted for a bit. He gave me some guidance and helped me to put things in perspective. He told me to call anytime. His time is paid for by Animas (Johnson and Johnson) and they offer his service freely. He was worth his weight in gold to me. I am not claiming that life will now be a bed of roses. He said some very powerful things and I have a LOT of work to do. He did not claim that this would be a cure and my son would instantly realize all that he had to do, the dangers of diabetes, or the sacrifices of his mother. Actually he claimed just the opposite...the kid will hate you but it will work out. Ironically, that was comforting.
Forty-eight hours ago I was stressed, depressed and alone. Today I am know how un-alone I really am. I have incredible friends who look out for me no matter how far apart we may be geographically. I truly am very blessed.
Thursday, October 29, 2009
Can I cry now?
Can I cry now? I feel like just sitting down and letting everything go. I am not sure if I would be crying for my failings or the failings of my child. Would it change anything? Probably not. Would I feel better? Well until I looked in the mirror and saw those horrible puffy eyes but then again they would go quite well with the increasingly greying hair.
Tonight was a repeat but worse of many nights we have had over the past few months. Liam has only just got a permanent teacher this week. I was away for the first day of this week. I was busy with his brother yesterday and then he was with his father last night so tonight I asked for the week's readings. Bad move...well bad move for my nerves.
Liam had forgot to bring his log sheet to his father's so he wrote things down from memory and meter. I wanted to see a few more days and could not immediately find his log sheet so I went through the meter. Again...bad move.
As I scrolled through his school meter I saw tests at 7 am and then nothing until 2pm. I saw readings of "HI". I saw tests at 9 am and then not again until 3pm. I saw lows that were never retested and then heading out to play on the playground. I was in shock. What the heck was wrong with the teacher? Why wasn't he reading the information I had sent to school? What was going on? Was this my fault? Have I been too lax in letting him test and learn on his own? I am asking if things are being done. He is lying to me and telling me it is but I am not looking at the meter each day. I am trusting him. This is my second go-round with a child this age. I should know better but funny it still hurts just as much.
I didn't know what to do. I told him I was sick and tired of this. How can I help him when he can't be bothered to help himself unless Mom is sitting on him. At home he tests fairly regularly. Does Mom need to follow him everywhere? He has lost some freedoms. I will be going into his classroom tomorrow. I am at school anyway but I will make a point to see that he has tested and to have a quick chat with his teacher. I have added more alarms on his pump. I hate having them on because I am the only person who seems to hear them. All it does is drain the batteries. When he is at home he ignores them. When his is at school, he seems to just turn them off. When he is at his father's house they all ignore it. The only one that it seems to help is the battery company because we end up going through so many more of them.
I have been told to step back and let him fall like this. I have been told to be there to pick him up, to help, to push. I tell others to do the same. The logic is sound but the practice? Its killing me and I worry that it is killing him. Am I expecting too much? Am I not on top of things enough? Should I be hovering again? I am going to have to in some respects but will we both get slack again? Will I feel comfortable and trusting again only to see another explosion of disappointment? Raising a teen is tough. Raising a teen with diabetes?? There is too much involved for one person but you do what you must so I will probably allow myself to cry for a moment and then I will pull up my boots and do what I must. I will hover. I will talk. I will check. I will listen to alarms. I will try and stay sane through it all.
Tonight was a repeat but worse of many nights we have had over the past few months. Liam has only just got a permanent teacher this week. I was away for the first day of this week. I was busy with his brother yesterday and then he was with his father last night so tonight I asked for the week's readings. Bad move...well bad move for my nerves.
Liam had forgot to bring his log sheet to his father's so he wrote things down from memory and meter. I wanted to see a few more days and could not immediately find his log sheet so I went through the meter. Again...bad move.
As I scrolled through his school meter I saw tests at 7 am and then nothing until 2pm. I saw readings of "HI". I saw tests at 9 am and then not again until 3pm. I saw lows that were never retested and then heading out to play on the playground. I was in shock. What the heck was wrong with the teacher? Why wasn't he reading the information I had sent to school? What was going on? Was this my fault? Have I been too lax in letting him test and learn on his own? I am asking if things are being done. He is lying to me and telling me it is but I am not looking at the meter each day. I am trusting him. This is my second go-round with a child this age. I should know better but funny it still hurts just as much.
I didn't know what to do. I told him I was sick and tired of this. How can I help him when he can't be bothered to help himself unless Mom is sitting on him. At home he tests fairly regularly. Does Mom need to follow him everywhere? He has lost some freedoms. I will be going into his classroom tomorrow. I am at school anyway but I will make a point to see that he has tested and to have a quick chat with his teacher. I have added more alarms on his pump. I hate having them on because I am the only person who seems to hear them. All it does is drain the batteries. When he is at home he ignores them. When his is at school, he seems to just turn them off. When he is at his father's house they all ignore it. The only one that it seems to help is the battery company because we end up going through so many more of them.
I have been told to step back and let him fall like this. I have been told to be there to pick him up, to help, to push. I tell others to do the same. The logic is sound but the practice? Its killing me and I worry that it is killing him. Am I expecting too much? Am I not on top of things enough? Should I be hovering again? I am going to have to in some respects but will we both get slack again? Will I feel comfortable and trusting again only to see another explosion of disappointment? Raising a teen is tough. Raising a teen with diabetes?? There is too much involved for one person but you do what you must so I will probably allow myself to cry for a moment and then I will pull up my boots and do what I must. I will hover. I will talk. I will check. I will listen to alarms. I will try and stay sane through it all.
Wednesday, October 21, 2009
I want a normal life!
I am tired of this. I am beat out and want off of this roller coaster. I didn't volunteer for it did I? Well maybe I said that I could handle anything as long as my son lived. I guess I can. I have managed this far but sometimes I wonder. Last night was definitely one of those nights.
My son kindly gave me a touch of his cold. I have been fighting sniffles and a sore throat. Add to that the fact that I have not been able to sleep for a few nights and last night I was exhausted. Bed was all I wanted to see. I drank some cold medicine. I crawled into bed with my book. I tossed and turned and soon midnight approached. I went in, tested Liam--17.8(320), corrected and crawled back into bed. Soon I was dozing into a lovely sleep for an entire four hours. At 4am I woke up and realized that I should get up and test Liam again. I pulled my weary body out of bed and headed back to his room. It didn't take me long to wake up when I saw 2.9(52) on his meter. I grabbed the juice and decided I was going to get a lot of reading done this morning! Sure enough it took an hour to see a rise to a point that I could go back to sleep.
Why couldn't we be a normal family and simply sleep through the night without worry? Because normal is simply a setting on the dryer and we are far from normal. We try though. This morning, after counting carbs and changing insulin cartridges we dealt with some "normal" things. There was the hair that would not stay in place and required Mom's magic touch to fix it all just so. There was the garbage that needed to go out. And there was the goodbyes that seemed especially poignant this morning. My sweet child was still alive, still healthy and still able to wish me safe travels before heading out the door.
Who needs a normal life? This one has some serious benefits.
My son kindly gave me a touch of his cold. I have been fighting sniffles and a sore throat. Add to that the fact that I have not been able to sleep for a few nights and last night I was exhausted. Bed was all I wanted to see. I drank some cold medicine. I crawled into bed with my book. I tossed and turned and soon midnight approached. I went in, tested Liam--17.8(320), corrected and crawled back into bed. Soon I was dozing into a lovely sleep for an entire four hours. At 4am I woke up and realized that I should get up and test Liam again. I pulled my weary body out of bed and headed back to his room. It didn't take me long to wake up when I saw 2.9(52) on his meter. I grabbed the juice and decided I was going to get a lot of reading done this morning! Sure enough it took an hour to see a rise to a point that I could go back to sleep.
Why couldn't we be a normal family and simply sleep through the night without worry? Because normal is simply a setting on the dryer and we are far from normal. We try though. This morning, after counting carbs and changing insulin cartridges we dealt with some "normal" things. There was the hair that would not stay in place and required Mom's magic touch to fix it all just so. There was the garbage that needed to go out. And there was the goodbyes that seemed especially poignant this morning. My sweet child was still alive, still healthy and still able to wish me safe travels before heading out the door.
Who needs a normal life? This one has some serious benefits.
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