The other day Liam told me that he had made a new years resolution. I asked what it was. He said to have better control of his diabetes--test more often, pre-bolus and more readings in range. My heart cracked just a little more. I was proud that he was at least talking the talk but I was scared that with puberty the focus on "readings" would lead to some disappointment.
It killed me a little more to know that there was a tool out there that could help him with this. It would give us more data and let us know what was going on when he wasn't testing but I had decided against purchasing it. Continuous Glucose Monitors continue to be much more popular than days of old. They are much smaller and much more convenient than ever before. Unfortunately they are not covered by the provincial insulin pump program, nor are they covered by Liam's father's medical insurance. His parents would have to pay for the system and then the monthly supplies. With braces to be paid for and a family vacation in the works, there is just nothing left for such extras as a CGMS.
Once again diabetes care is reduced to dollars and cents. It becomes about using the tools you can afford not using the tools that would best manage your care but we are more fortunate than a lot of others. Most adults living with diabetes still do not have government assisted insulin pump programs to lean on. They are stuck having to use injections or cover the cost of insulin pump therapy out of their own pockets. Even for those with insurance there is often "caps". We ran into a cap the other day for test strips. Liam used up more than the allotted $1400 worth of test strips...no kidding we test 10-12 times per day. I couldn't believe a program would be so limiting but for many that low cap is found on all of their diabetes care supplies.
This kills me. This could be my son in a few years. I am already telling him that he has to look at his employment options in terms of what job will give him the best benefits. That is insane. Its not about what you want to do, its about what will either pay the most or offer the most.
All of this was in my mind the other day as I went to one of the first pre-budget consultations in our province. I had a person who was willing to stand forward and speak to the need for an adult insulin pump program in our province. We were slightly misinformed regarding how the process worked and what we should present. We did get our message out there and were supported by another minister at the table but I still left there wondering if any messages were getting out there. Were people permanently clueless about diabetes?
After the presentation, one of the assistants to the Minister of Finance spoke up and said that some pump supplies were in fact covered for those over 18. The presenter pressed the man to say what supplies were covered but he could not answer her. I was shocked as our diabetes clinic was looking to receive funds from the Diabetes Hope Foundation to help young adults. They surely should have known if there was a provincial program and wouldn't look to private funding. I could not let this sit. The assistants are known to have a lot of power when it comes to getting things done as they tend to sit in the departments for longer than Ministers. I had to make sure that this guy had his facts correct.
I went up to him after the meeting and explained who I was. I asked him what pump supplies were covered. He said that while the pump wasn't covered, test strips were. And???? Well it turns out that was it. Test strips could be covered under the provincial drug plan for qualified users. Okay but that helps all people living with diabetes whether they are on insulin, medication or diet and exercise. It does not help someone to maintain their insulin pump. He had no idea. I was scared. This was one of the people involved in deciding on if we should have funding and he doesn't have a clue about what we are talking about.
The plus side is that there are a few more public meetings available for people to set them straight. The downside is trying to find people to speak out, to take an afternoon or morning of their time and spend it in one of these forums. It is trying to get people to write emails and contact the panel to let them know that this is important and why. Please, if you can help us to help the adults with diabetes in Newfoundland and Labrador. With the right tools and knowledge anything is possible. Even Liam's goal of better readings. He has already dropped his A1c by .6% and has a very proud mom.
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
Monday, January 18, 2010
Tuesday, January 12, 2010
Adult Pump Program
I said it was time to get back to the grind. Time to get down to brass tacks. Time to tackle the big issues and sure enough the government agreed. On Monday I heard the news that pre-budget consultations were beginning at the end of the week. No pressure there! I knew that if I wanted to see an adult pump program in 2010 there was only one thing to do...get to work!
Last year I had worked with a number of people. We had gathered information. We had devised strategies. We were set. We hit the radios. We were in the newspapers. We met with politicians and wrote letters. Unfortunately we also were met with a recession and our chances of expanding the existing insulin pump program were crushed under the burden of a depressed economy.
2010 is a new year. Things are looking up. The economy of Newfoundland and Labrador is better than many. This year we stand a chance if someone takes the lead. I had a group already in mind. I had parents whose children were now young adults. They would be perfect to speak but many of these parents were busy so the best plan of attack was to have literature prepared for them in advance. That is what I did yesterday--I planned, I wrote, and I emailed. I created a letter to be sent to the submissions committee. It could be passed to friends and they could email it as well. It would take minutes but the impact could be incredible. How many submissions could we send in if I sent it and then asked 5 friends to do the same. Those five friends each sent the email and asked five of their friends to do the same. The impact would be huge. Just look what happened on Facebook last week when we were asked to post our bra color for the day. It can be done. I have sent my email...actually I have a few more people to email yet. I know that some of them are forwarding the instructions on to their friends already. This can make a difference.
The cost of expanding the insulin pump program to adults in this province is minimal. There is little infrastructure required as most is already in place for youth. There is little training involved as there will most likely not be a lot of new pumpers. The benefit will be to those already pumping and to the young adults who turn 18 and find themselves with no means to continue their pump therapy. We need to protect them. We need to help those retirees who will no longer have their pumps and supplies covered by their insurance with their reduced "retirement plans". We need to protect our loved ones with diabetes. If we can improve their quality of care then we will reduce the burden that the health care system will see if they develop complications.
We can do this. You can do this. If you live in the province of Newfoundland and Labrador or know someone who does, send the following email to them. Have them send it to budgetsubmissions@gov.nl.ca Ask them to send it to their friends. Let's see real public pressure this time around. Let us help the government see sense!
Pre-budget submission 2010: Adult Insulin Pump Program
In 2007, the government of Newfoundland and Labrador became the third province to provide coverage for insulin pumps and supplies to their youngest residents. In 2010, we are asking this government to continue with this mandate towards superior provincial health care and extend this benefit to all citizens of the province living with insulin dependent diabetes.
It is estimated that diabetes will affect over 3 million Canadians in 2010. Newfoundland and Labrador will be the hardest hit as it has the highest incidence of diabetes in the country. The medical costs of those living with diabetes are two to three times higher than those who are not living with diabetes. Direct costs from this disease can range from $1000-$15,000 annually and the cost to the Canadian health care system is expected to reach $15.6 billion this year and $19.2 billion by 2020. By taking a proactive approach to diabetes care through insulin pump therapy, the government of Newfoundland and Labrador can begin to seriously reduce the enormous costs of this disease on the health care system.
When diabetes is managed with advanced treatment options such as basal/bolus insulin regimens, insulin pumps, regular blood glucose testing and Continuous Glucose Monitoring Systems, there is a very real decrease in the amount of time spent in the hospital and a very real decrease in the cost to the health care system. There is a 76% decrease in retinopathy (eye disease), 34-56% decrease in kidney disease, and 69% decrease in neuropathy (nerve disease) in intensively treated patients with diabetes versus those who use more outdated methods. Reductions in these diseases as well as a reduction in hospitalization for poor diabetes control adds up to a large fiscal savings.
Currently residents of Newfoundland and Labrador under 18 years of age are privy to much of this advanced treatment. The current insulin pump program allows the children of Newfoundland and Labrador who are living with diabetes to avail of the best medical care available to them. Sadly, when they turn 18 years of age they must sacrifice their care unless their personal finances allow them to take over their own health care costs. The reality is that many young people cannot afford to do this. They are put in a position where they must choose to leave the province to find either higher paying jobs or ones with more comprehensive benefit packages or stay at home and sacrifice their health with less effective insulin regimens.
The government of Newfoundland and Labrador has the power to change this in their 2010 budget. Expanding the insulin pump program to adults in this province will not have many of the costs associated with the initial program. Many adults who would avail of such a program are already insulin pump users and thereby removing the need for much of the training services otherwise required. In the most highly saturated markets, it is thought that only 35% of those eligible choose to use an insulin pump. In Newfoundland and Labrador, this translates to approximately 500 adults, 30% of whom would most likely have existing coverage. An expansion of the insulin pump program would therefore cost the government a maximum of $1.3 million per year in insulin pumps and supplies.
Insulin pump therapy has a huge impact on the lives of people living with diabetes. This group is at a high risk for depression but insulin pump therapy has been shown to improve quality of life and provide for a better self image.
We therefore respectfully ask that the government of Newfoundland and Labrador expand its insulin pump program to include all citizens of the province who have insulin dependent diabetes.
Sincerely;
Diabetes Advocacy
Thursday, January 7, 2010
Back to the Grind
January 2010. Where did the time go? I know its a question we ask every year. You would think that we would have the answer by now! Well I don't have the answer to that question but I do have another question that has been asked before that I will be asking again in 2010...Premier Williams, please, please, please expand our provincial insulin pump program to include those over 18 years of age!!!
Yes, its that time of year again! Its time to roll up our sleeves, bring out our dialing fingers and our typing hands and get back to work. Last year we asked for pumps for adults. We asked that the Newfoundland and Labrador government follow in the path of the Ontario government. Ontario had become a "have not" province and yet still manages to fund insulin pumps for all of its citizens living with diabetes despite age. Newfoundland and Labrador declared itself to be a "have" province and yet new hospital parking lots took precedence over an adult insulin pump program. Now I have tried to park in some hospital lots and I will agree that there can be huge problems there but the reality of 18 year old men and women having to remove their insulin pumps because they cannot afford the supplies is personally a much more grave concern. Parking is an inconvenience. Insulin pump therapy and the benefits it provides has a direct impact on the provincial economy and its spending.
Individuals who are able to tightly manage their diabetes are less likely to end up in the hospital with emergencies blood glucose issues. Individuals who use an insulin pump can more easily handle jobs that involve shift work and therefore can be tax paying members of society. Individuals with diabetes who are able to maintain their treatment method after they turn 18 have less reason to leave the province to seek employment. They can stay home, work in their local economy and still afford to live. In a province that has seen record out migration for longer than it has seen in-migration, you would think that this would be a win-win proposition.
This program is not a costly one. Many adults living with Type 1 diabetes in Newfoundland and Labrador will already have some sort of pump coverage. Adults who were not transitioned to a pump as youth will often be reluctant to start on "new" therapies. Last year's estimates suggested that a four year pump program, including pumps and supplies for adults without any pump coverage (not including man hours) would cost the government approximately $2million. What is $2 million when compared to helping thousands of adults living in Newfoundland and Labrador?
At the moment, the reality is that young adults who turn 18 and go into the workforce or who have parents without insulin pump coverage are often forced to rely on donations or return to injections. This is not acceptable. Please help us to make the government aware. Let us know if you can help emailing MHAs, calling and getting the word out at pre-budget consultations and more. Lets make the 2010 budget be a budget that will assist those living with diabetes in Newfoundland and Labrador.
Yes, its that time of year again! Its time to roll up our sleeves, bring out our dialing fingers and our typing hands and get back to work. Last year we asked for pumps for adults. We asked that the Newfoundland and Labrador government follow in the path of the Ontario government. Ontario had become a "have not" province and yet still manages to fund insulin pumps for all of its citizens living with diabetes despite age. Newfoundland and Labrador declared itself to be a "have" province and yet new hospital parking lots took precedence over an adult insulin pump program. Now I have tried to park in some hospital lots and I will agree that there can be huge problems there but the reality of 18 year old men and women having to remove their insulin pumps because they cannot afford the supplies is personally a much more grave concern. Parking is an inconvenience. Insulin pump therapy and the benefits it provides has a direct impact on the provincial economy and its spending.
Individuals who are able to tightly manage their diabetes are less likely to end up in the hospital with emergencies blood glucose issues. Individuals who use an insulin pump can more easily handle jobs that involve shift work and therefore can be tax paying members of society. Individuals with diabetes who are able to maintain their treatment method after they turn 18 have less reason to leave the province to seek employment. They can stay home, work in their local economy and still afford to live. In a province that has seen record out migration for longer than it has seen in-migration, you would think that this would be a win-win proposition.
This program is not a costly one. Many adults living with Type 1 diabetes in Newfoundland and Labrador will already have some sort of pump coverage. Adults who were not transitioned to a pump as youth will often be reluctant to start on "new" therapies. Last year's estimates suggested that a four year pump program, including pumps and supplies for adults without any pump coverage (not including man hours) would cost the government approximately $2million. What is $2 million when compared to helping thousands of adults living in Newfoundland and Labrador?
At the moment, the reality is that young adults who turn 18 and go into the workforce or who have parents without insulin pump coverage are often forced to rely on donations or return to injections. This is not acceptable. Please help us to make the government aware. Let us know if you can help emailing MHAs, calling and getting the word out at pre-budget consultations and more. Lets make the 2010 budget be a budget that will assist those living with diabetes in Newfoundland and Labrador.
Tuesday, December 29, 2009
The holiday that almost wasn't....
Christmas is over. My tree is put away. The gifts are tidied and everything new has a home. The weather has been wonderful...barely a peck of snow to be seen so I decided to hop in my car and take my boys on a road trip for a week. We had planned to spend some time with loved ones elsewhere in the province so two days after Christmas we hit the open road.
I had spent Boxing Day cleaning and packing. By the time midnight came around I was exhausted but certain that I had all that I needed for two young men, two dogs, myself and life with diabetes. The cooler was packed. Insulin was stockpiled. Test strips and spare meters were safely tucked away. I had enough infusion sets to last two weeks and enough cartridges for a month. Life was perfect!
We set out early Sunday morning with the sun shining. This was going to be an incredible week. We had a lot of plans with great company. The trip was 8 hours long in the summer so I anticipated it being a little longer during the winter. With the lovely roads and Mother Nature on our side, we made great time. We listened to music, set travel basals, and ate clementines. Liam's rates began to climb a little but he corrected and we continued on in holiday bliss.
Within two hours of our destination, I reminded Liam to test and noticed that he was just grabbing a meter and getting ready to lance his hand. I asked if he had washed his hands. He said no and asked if I had any handwash? Hold it right there! What did he mean did I have any hand wash??? What was he washing his hands with the entire trip? I knew for a fact that the last time he tested was right after peeling a clementine for his brother and me. His hands were covered in fruit juice! He was high but what was the juice reading and what was his blood???
My heart dropped. I was terrified. My head knew that if he had endangered himself that we would have seen the repercussions by now but I began to shake. I kept driving for fear of completely losing my temper out of pure terror. His correction would not have been small. Images of seizures while I was driving were flashing through my head. I kept trying to breathe and stop shaking.
Eventually I settled to the fact that he was still alive and somehow he had once again lucked out. We arrived at our destination and began to unwind once again. We sat down to a lovely meal and unpacked our bags. Soon we headed to bed but for whatever reason I was awake by 1am. I went in to test Liam and not surprisingly he was high. I went to correct and noticed that he had ONE unit of insulin left in his pump! I began to search through our bags to find the cartridges. I found the insulin. I found the infusion sets. There were no cartridges! By 1:30 I decided to try to refill the cartridge we had and deal with things in the morning. With fork in hand I managed pry back the plunger and then proceeded to inject insulin into the cartridge. The kitchen smelled like bandaids by the time I was finished but he had insulin and I could breathe for a bit.
In the morning I called the pump company for help. I was told that this was a supply issue and not a pump issue so I had to call the supply people. They kindly gave me the toll free number which I called. Sadly they were enjoying Christmas and could not take my call at the moment. They said that I could leave a message and I did. While waiting to be able to talk to a real person the next day I refilled the cartridge that had more than a few air bubbles from my 2am filling. The next day I waited until noon before trying the supply company again. The good news was that it rang. The bad news was no one would answer! Thankfully I happened to have recently been in contact with a VP for the supply company and had his email address still sitting on my Blackberry...shock of shocks, I didn't lose it this time! I sent off a desperate email hoping that he was not on holidays and that he didn't think me too much of a pain.
I literally screamed with joy when I got a reply asking for the address I was staying at. He said he would try and have cartridges here for me the very next day!
Despite a bit of a bumpy start, my holiday has been fabulous. Great weather...anything that does not resemble snow in December is great in my world! A wonderful host and now insulin cartridges!
Happy New Year!
I had spent Boxing Day cleaning and packing. By the time midnight came around I was exhausted but certain that I had all that I needed for two young men, two dogs, myself and life with diabetes. The cooler was packed. Insulin was stockpiled. Test strips and spare meters were safely tucked away. I had enough infusion sets to last two weeks and enough cartridges for a month. Life was perfect!
We set out early Sunday morning with the sun shining. This was going to be an incredible week. We had a lot of plans with great company. The trip was 8 hours long in the summer so I anticipated it being a little longer during the winter. With the lovely roads and Mother Nature on our side, we made great time. We listened to music, set travel basals, and ate clementines. Liam's rates began to climb a little but he corrected and we continued on in holiday bliss.
Within two hours of our destination, I reminded Liam to test and noticed that he was just grabbing a meter and getting ready to lance his hand. I asked if he had washed his hands. He said no and asked if I had any handwash? Hold it right there! What did he mean did I have any hand wash??? What was he washing his hands with the entire trip? I knew for a fact that the last time he tested was right after peeling a clementine for his brother and me. His hands were covered in fruit juice! He was high but what was the juice reading and what was his blood???
My heart dropped. I was terrified. My head knew that if he had endangered himself that we would have seen the repercussions by now but I began to shake. I kept driving for fear of completely losing my temper out of pure terror. His correction would not have been small. Images of seizures while I was driving were flashing through my head. I kept trying to breathe and stop shaking.
Eventually I settled to the fact that he was still alive and somehow he had once again lucked out. We arrived at our destination and began to unwind once again. We sat down to a lovely meal and unpacked our bags. Soon we headed to bed but for whatever reason I was awake by 1am. I went in to test Liam and not surprisingly he was high. I went to correct and noticed that he had ONE unit of insulin left in his pump! I began to search through our bags to find the cartridges. I found the insulin. I found the infusion sets. There were no cartridges! By 1:30 I decided to try to refill the cartridge we had and deal with things in the morning. With fork in hand I managed pry back the plunger and then proceeded to inject insulin into the cartridge. The kitchen smelled like bandaids by the time I was finished but he had insulin and I could breathe for a bit.
In the morning I called the pump company for help. I was told that this was a supply issue and not a pump issue so I had to call the supply people. They kindly gave me the toll free number which I called. Sadly they were enjoying Christmas and could not take my call at the moment. They said that I could leave a message and I did. While waiting to be able to talk to a real person the next day I refilled the cartridge that had more than a few air bubbles from my 2am filling. The next day I waited until noon before trying the supply company again. The good news was that it rang. The bad news was no one would answer! Thankfully I happened to have recently been in contact with a VP for the supply company and had his email address still sitting on my Blackberry...shock of shocks, I didn't lose it this time! I sent off a desperate email hoping that he was not on holidays and that he didn't think me too much of a pain.
I literally screamed with joy when I got a reply asking for the address I was staying at. He said he would try and have cartridges here for me the very next day!
Despite a bit of a bumpy start, my holiday has been fabulous. Great weather...anything that does not resemble snow in December is great in my world! A wonderful host and now insulin cartridges!
Happy New Year!
Friday, December 25, 2009
Happy Holidays
Every day I have meant to sit down here and write about so many things. There has been rumblings of advocates in Ontario wanting to see change in schools. There has been my own research and internal battle on whether or not to get a CGMS for my son...and of course there has been the diabetes roller coaster ride that just never seems to end.
The past 24 hours however have had me recollecting "Christmas with diabetes". Times have changed a lot over the years. We no longer wake Liam up to eat at certain times or require that meals be at a set point in the day with a fixed carb value. This year his teacher gave him a box of Rollo chocolates for Christmas and his breakfast was a diet root beer that he found in his stocking--at true breakfast of champions! He was woke up when Mom was tired of staring at the gifts and wanted company. Brunch consisted of eggs, turkey bacon, toast and chocolates. Our Christmas dinner was a never ending plate of potatoes, stuffing, salads, and turkey with diet Pepsi in a wine glass and apple crisp to top it all off. His pump was steady trying to keep up with the next plate full of food but I guarantee the child is not hungry this evening!
There has been a bit of extra testing today has he embarked on some Wii mountain climbing and high powered dirt biking. After listening to my ceiling rattle and waiting for things to cave in, I felt that a bit of testing might be a good idea. Ironically all was fine!
There were some things that reminded me that our lives are a little different because of diabetes however. Last night I chose to take my kids to Christmas Eve mass. We are not a religious family but its a tradition upheld by friends and one that I felt would be nice to continue with my children. The families all walked over to the Church. Liam needed to test once we found a pew but was concerned about the noise of the meter. I turned off the "beep" and he tested. I am sure whoever vacuumed in there today found a stray test strip. It would have jumped from his pocket I know it! He was running a little high and it was noticed by the family we were spending the evening with. They were shocked to see Liam have only one piece of pie. My dear friend finally turned to him and asked "Who are you and what did you do with our Liam?" Liam said "I am high and I just can't really eat right now."
You have to know how odd that would sound if you didn't live with diabetes! Thankfully they have been around us for the past 12 years and are fully aware that it is not a big deal for my 12 year old to be "high". Well they know its a problem and they understand that he doesn't feel well but they are not searching for drug paraphernalia or calling child protective services.
I have done a lot of personal reflection over this holiday season and its amazing how far we have come. Diabetes, the teen years, and puberty continue to threaten my sanity but with the many advances in care and the support of new and old friends--we are truly blessed and will somehow make it through this ride stronger and richer for the experience.
Happy holidays to one and all and thank you for being their for us!
Saturday, December 12, 2009
New tricks for an old dog
After feeling like a failure upon receiving the last diabetes "grade", I sent myself back to school. I got out the John Walsh "Pumping Insulin" book and began to carry it around with me. At first it simply enjoyed a few rides in the car but eventually I took it out of my bag and began to read.
I have read these books more than once and keep them for a reference source. After pumping for seven years, I decided that it was time to see what more could be done. If needed, I was willing to completely start over with basal rates and bolus ratios. There had to be something I could do to help me get through puberty...well besides let go.
The first few chapters were all about why people would want to pump, what to look for in a pump, etc. Great information but not what I needed to know at the moment. I kept reading because I knew that no matter how basic some parts may have seemed, I was going to learn a lot once again. Sure enough it happened! It was not exactly like a lightening bolt revelation. It was more like a "you must be kidding? Who could really do this?" sort of moment. In fact I instantly pulled out my blackberry and sent out an email asking "who can really do this??" Well it turns out a lot of people.
John Walsh was discussing the importance of prebolusing. When you are dealing with a small child this task becomes almost impossible--well at least in my house. We never knew if Liam would eat anything let alone to try and prebolus for an entire meal 20 minutes before he was going to eat! Recently I had been told to get him in this habit of prebolusing. It would have a real effect on his A1c. We had been trying but I wasn't going crazy about it. After reading the chapter and talking with other parents, I decided to be a bit more aggressive with this. We began to prebolus as soon as we were preparing to sit down for supper. We were still far from the required 20 minutes but much better than 20 minutes after we had begun eating or worse--simply forgetting altogether.
Prior to this revelation I just didn't know what to do. There were highs that I could not bring down and I was going crazy. Maybe hormones have just been kind to me but we have been prebolusing for a week and WOW! Readings have been in range an incredible amount of the time. It almost scares me when I look and see such great readings. Now when Liam is on his own, he is still not perfect. He still forgets to bolus let alone prebolus but when he is around Mom the new habit of test, bolus and prepare your food is working for him.
I went a step further today and asked "have you noticed how great your readings have been? Don't you feel really good?" The answer was typical Liam, typical teen..."My readings have been in range? I didn't notice." Ahhhhhh! Oh well Mom noticed. Mom feels a bit better and will take this small bit of respite while I can because I have been assure that it will definitely not last.
I have read these books more than once and keep them for a reference source. After pumping for seven years, I decided that it was time to see what more could be done. If needed, I was willing to completely start over with basal rates and bolus ratios. There had to be something I could do to help me get through puberty...well besides let go.
The first few chapters were all about why people would want to pump, what to look for in a pump, etc. Great information but not what I needed to know at the moment. I kept reading because I knew that no matter how basic some parts may have seemed, I was going to learn a lot once again. Sure enough it happened! It was not exactly like a lightening bolt revelation. It was more like a "you must be kidding? Who could really do this?" sort of moment. In fact I instantly pulled out my blackberry and sent out an email asking "who can really do this??" Well it turns out a lot of people.
John Walsh was discussing the importance of prebolusing. When you are dealing with a small child this task becomes almost impossible--well at least in my house. We never knew if Liam would eat anything let alone to try and prebolus for an entire meal 20 minutes before he was going to eat! Recently I had been told to get him in this habit of prebolusing. It would have a real effect on his A1c. We had been trying but I wasn't going crazy about it. After reading the chapter and talking with other parents, I decided to be a bit more aggressive with this. We began to prebolus as soon as we were preparing to sit down for supper. We were still far from the required 20 minutes but much better than 20 minutes after we had begun eating or worse--simply forgetting altogether.
Prior to this revelation I just didn't know what to do. There were highs that I could not bring down and I was going crazy. Maybe hormones have just been kind to me but we have been prebolusing for a week and WOW! Readings have been in range an incredible amount of the time. It almost scares me when I look and see such great readings. Now when Liam is on his own, he is still not perfect. He still forgets to bolus let alone prebolus but when he is around Mom the new habit of test, bolus and prepare your food is working for him.
I went a step further today and asked "have you noticed how great your readings have been? Don't you feel really good?" The answer was typical Liam, typical teen..."My readings have been in range? I didn't notice." Ahhhhhh! Oh well Mom noticed. Mom feels a bit better and will take this small bit of respite while I can because I have been assure that it will definitely not last.
Wednesday, December 2, 2009
Failing Grade
Its funny how everyone thinks of the A1c test if it is the true measure of your ability to be a pancreas. What is supposed to be a guide becomes a ruler on which to judge if we have "passed" or "failed" in our ability to beat the diabetes gods for the past 3 months.
Liam's A1c was done about a month ago. We finally got the results yesterday. I knew I would fail. I knew I had been a bad pancreas. I knew that I wasn't logging. I knew that Liam not testing and me not being on top of it all would come back to bite me. I also knew that my son had begun puberty and hormones were now seriously messing with our ability to get any sort of handle on control.
I failed. By my standards I failed rather miserably. I believe it is the worst A1c we have had. Yes it could have been worse but I still feel that I have failed. I know there has been a burn out factor and still the good old "mommy guilt". I am burnt out after all of this time and yet my child will have to carry this burden for much longer than I will. Who am I to burn out so quickly?
Good or bad, Liam has a much more lax attitude towards his disease. He takes things as they come, corrects as he goes along and does not seem bothered by much. Mom takes each high or low as a personal failure and over the past few months it has been worse than ever. I have become my own worst critic. That is not a good thing.
I have had to step back and look at the advice I give so many newly diagnosed parents...look at the world 4 hours at a time. If you have a good 4 hour period be proud and know that you were a good pancreas. If you get a longer stretch with good numbers then do a happy dance. You were amazing! We have seen good stretches. I have made good calls but I am still sending myself back to school. Time to dig out the John Walsh "Pumping Insulin" books and make some new notes. I haven't sat down with any of them in a few years and I think I need to start fresh. Its time to clean out the cobwebs and look at things as if I was just starting out. Its easy to get complacent. You cannot let diabetes rule your life but complications are real and a good respect of the "gods" you are playing with is not a bad idea either.
Back to the books!
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!
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