My day began at 6am. Our flight was at 9 and I knew how much time I needed to get organized. At 7:30 we were waiting for our cab...who took its dear sweet time. By 8:30 we were standing in a line to check luggage that headed out the airport door. Would we make it on time? Yep,we had time to spare. The flight was cancelled! We spent the next three hours finding a new flight to get out that day and trying to get our money back for the cancelled flights.
After a morning in the airport, we finally made it to our security call. We had our boarding passes and IDs in hand and headed to the dreaded security check. They sent Larry off to the regular room and my son and I headed off to a small room on the side. I wondered if we were being singled out for a reason. The dreaded little room was just another part of the regular security check.
I put our bags on the x-ray belt and told the security guy that my son's diabetes supplies were in the bag. We had syringes and other supplies, did he need it opened? He said that that was fine. He turned to my son and asked him if he had any metal objects on him. I said his pump clip. He then yelled out to the guy on the other side "Hey! He has an insulin pump on his belt." I was really impressed at how knowledgeable they seemed to be about pumps and the supplies we needed to carry.
My son went through with little difficulty. Shock of all shocks, I went through with no problem. I always have jewelry that sets things off. This time was a breeze! I was shocked and said so. The lady said she was waiting for things to go off too but I was good to go!
As we left the screening area, we looked for Larry. I mentioned to my son how shocked I was that we cleared security with such ease. He said, "yeah. I thought my chains would set it off too but then I remembered that I took them off and left them on my dresser."
HOLD IT! Stop right there. Try not to blow a gasket..."You left ALL of your chains on your dresser? You are wearing NO necklaces? As in you are NOT wearing your new Medic Alert necklace?" Breathe, breathe, breathe.
"Um, no. I thought it was causing a rash on my chest so I took it off."
Again, working to breathe, "You thought it was causing a rash. You knew that we were travelling a long distance. You knew that you would be away for over two weeks, AND you left your Medic Alert jewelry behind? It is not causing a rash."
"Well, I did find my old bracelet. The other day."
"And you left that behind as well?"
"Um, yeah."
Thankfully for my son, we found Larry at that point and listened to his tale of going through security. Of all of us, I would have thought he would have had the least problems but he was beginning to think he would be down to his underwear before he got through.
I continued to glare at my son. I could not really punish him because there was nothing to "take away". All I could do was work to breathe and tell him that NEVER, EVER, NEVER was he to EVER take off a Medic Alert item again!!!
He won't listen. It will happen again. He said he should get a tattoo. It would be easier. He is a lot too young right now but its looking like the only viable option...one day. Or he could grow up! Oh my!
Thankfully the day did get better as we are now at the Friends for Life Canada conference and I have already had a chance to hug and chat with so many wonderful friends.
Friday, July 29, 2011
Monday, July 25, 2011
FIVE seconds will do it
As my son ages, I am desperately hoping that he will wake up to treat his highs and especially his lows. Extreme highs are no problem--he gets up to use the washroom or vomit without any difficulty. At that point, I am usually also awake though and asking him if he tested. He normally hasn't but has the look of "Mom, I know I am high and I have other things on my mind right now besides exactly how high I really am."
Lows are another story. I am impressed by him occasionally smiling back at me when I go to test him and taking the lancing device away from me to do it himself. More often than not however, he is sound asleep and nothing wakes him low or no low.
Last night we had the following conversation about night testing...
Son: Did you hear the thunder last night? It woke me up!
Me: GREAT! So did you test when it woke you up? There could have been a reason that you were awake so its a great time to test.
Son, looking at me like I had three heads: No. I was only awake for a few seconds and then went right back to sleep.
Me: It only takes FIVE seconds to test! You really should test when you wake up. Its a good habit to get into.
Son: Yeah, well that's what I would usually do but some how I forgot last night. It must have been the thunder that messed me up.
Of course the last line was said as he quickly moved on to another room, praying that I would not follow.
Oh the fun of them growing up! Independence brings so many worries and diabetes just adds to the pile.
Lows are another story. I am impressed by him occasionally smiling back at me when I go to test him and taking the lancing device away from me to do it himself. More often than not however, he is sound asleep and nothing wakes him low or no low.
Last night we had the following conversation about night testing...
Son: Did you hear the thunder last night? It woke me up!
Me: GREAT! So did you test when it woke you up? There could have been a reason that you were awake so its a great time to test.
Son, looking at me like I had three heads: No. I was only awake for a few seconds and then went right back to sleep.
Me: It only takes FIVE seconds to test! You really should test when you wake up. Its a good habit to get into.
Son: Yeah, well that's what I would usually do but some how I forgot last night. It must have been the thunder that messed me up.
Of course the last line was said as he quickly moved on to another room, praying that I would not follow.
Oh the fun of them growing up! Independence brings so many worries and diabetes just adds to the pile.
Labels:
night testing,
teens with type 1 diabetes,
thunder
Friday, July 22, 2011
View from a plateau
Last night, as I was laying in bed trying to get to sleep, I realized that while diabetes is a constant roller coaster ride, living with a child with diabetes has been a journey in and of itself.
When he was diagnosed over eleven years ago, we were dropped into a forest. I was grateful that there was light and my son was alive to see it. I had some fear of the unknown but it did not overwhelm me. I saw the trees but didn't notice the forest. I saw a trail that led me forward and with some trepidation I followed it.
Life with a toddler with diabetes had many forests to navigate my way through. Along the way however, I was thrown a backpack. It was filled with knowledge and support. There were Scooby Doo band aids to patch up the "owies" and make me laugh. That backpack was the www.childrenwithdiabetes.com parents mailing list. The people I met through the email list are still on this journey with me today.
As we made our way through the forest, there were ravines that came out of nowhere and brought us to their brink. Those ravines came from dealing with a child too young to understand what has happening to him, NPH unpredictability, and so much more. We still come across them now and then but I have my backpack and have developed strength of character that somehow gets me through.
In the preteen years, we walked along a river bed. The waters were sometimes calm and gave me a sense of peace. I could do this. I had a handle on things but I knew that beneath the water was a current that I could not fathom. Puberty loomed ahead and I enjoyed the calm waters while I could.
The river bed had its share of rocks for us to stumble over. We were entering a time when I had to begin to let go. My son's doctor wanted him to begin to take ownership of his care. He was testing but he was to learn about his pump and Mom was to step back a bit. This brought rough travels, more scrapes and the need for those Scooby Doo band aids more than once. The river led us to the foot of a mountain and I knew that there was no way around it. Puberty had arrived and it was now time to enter the ominous mountain ranges.
I am not a climber. I am not an adventurer. I had made it this far with help and developing a confidence that allowed me to move forward. I knew that these mountains could be treacherous and I now knew enough to be terrified. Puberty--my next mountain range, would bring steep learning curves for both me and my son. The drop from any of these mountains was no less deadly than the ravines we had avoided earlier in our journey. With my backpack tightly attached to my back, I took my son's hand and we challenged the mountain.
Its been two years since we started this climb. There have been paths filled with boulders. There have been grassy patches that allowed us to rest. It hasn't been easy but I feel that we have finally managed to make it to our first plateau.
I am at a spot where I can now look out and breathe a little. My son does a lot of his own care. He changes his sites (most of the time). He fills his cartridges (although not until his pump screams that he is virtually out of insulin). He tests quite often although not always at the points I would like. He has began talking to me about when he needs to make changes in his rates and has a pretty good grasp of carb counting. He goes to bed later than me so he does his last test at night and I only have to wake in the wee hours of the morning to check on him. He occasionally wakes when I test him now and that gives me hope for him waking when he is on his own one day.
The view from this plateau is amazing. We have come so far but there are still huge range of mountains for us to traverse. We have many more teen years and freedom issues to navigate through. There will be some forms of rebellion, the stretching of wings, and pushing of limits. There will be learning to let go and him learning to stand by himself. For now, I will enjoy the lull in the fight. Readings are okay, attitude is positive, and life is good. I will sit here for as long as the diabetes gods will allow. We will recharge and get ready to tackle the next mountain thrown in our path.
When he was diagnosed over eleven years ago, we were dropped into a forest. I was grateful that there was light and my son was alive to see it. I had some fear of the unknown but it did not overwhelm me. I saw the trees but didn't notice the forest. I saw a trail that led me forward and with some trepidation I followed it.
Life with a toddler with diabetes had many forests to navigate my way through. Along the way however, I was thrown a backpack. It was filled with knowledge and support. There were Scooby Doo band aids to patch up the "owies" and make me laugh. That backpack was the www.childrenwithdiabetes.com parents mailing list. The people I met through the email list are still on this journey with me today.
As we made our way through the forest, there were ravines that came out of nowhere and brought us to their brink. Those ravines came from dealing with a child too young to understand what has happening to him, NPH unpredictability, and so much more. We still come across them now and then but I have my backpack and have developed strength of character that somehow gets me through.
In the preteen years, we walked along a river bed. The waters were sometimes calm and gave me a sense of peace. I could do this. I had a handle on things but I knew that beneath the water was a current that I could not fathom. Puberty loomed ahead and I enjoyed the calm waters while I could.
The river bed had its share of rocks for us to stumble over. We were entering a time when I had to begin to let go. My son's doctor wanted him to begin to take ownership of his care. He was testing but he was to learn about his pump and Mom was to step back a bit. This brought rough travels, more scrapes and the need for those Scooby Doo band aids more than once. The river led us to the foot of a mountain and I knew that there was no way around it. Puberty had arrived and it was now time to enter the ominous mountain ranges.
I am not a climber. I am not an adventurer. I had made it this far with help and developing a confidence that allowed me to move forward. I knew that these mountains could be treacherous and I now knew enough to be terrified. Puberty--my next mountain range, would bring steep learning curves for both me and my son. The drop from any of these mountains was no less deadly than the ravines we had avoided earlier in our journey. With my backpack tightly attached to my back, I took my son's hand and we challenged the mountain.
Its been two years since we started this climb. There have been paths filled with boulders. There have been grassy patches that allowed us to rest. It hasn't been easy but I feel that we have finally managed to make it to our first plateau.
I am at a spot where I can now look out and breathe a little. My son does a lot of his own care. He changes his sites (most of the time). He fills his cartridges (although not until his pump screams that he is virtually out of insulin). He tests quite often although not always at the points I would like. He has began talking to me about when he needs to make changes in his rates and has a pretty good grasp of carb counting. He goes to bed later than me so he does his last test at night and I only have to wake in the wee hours of the morning to check on him. He occasionally wakes when I test him now and that gives me hope for him waking when he is on his own one day.
The view from this plateau is amazing. We have come so far but there are still huge range of mountains for us to traverse. We have many more teen years and freedom issues to navigate through. There will be some forms of rebellion, the stretching of wings, and pushing of limits. There will be learning to let go and him learning to stand by himself. For now, I will enjoy the lull in the fight. Readings are okay, attitude is positive, and life is good. I will sit here for as long as the diabetes gods will allow. We will recharge and get ready to tackle the next mountain thrown in our path.
Tuesday, July 19, 2011
Pandering to the Ignorant
As many of you may have heard by now, on the 15th of July, the Southside Times printed an article written by Wendell Fowler. I have read that he claims to be a "Food Literacy Activist, Motivational Speaker, Entertainer, Nutritional Consultant, CBS TV Host, Food Journalist, and National Health Columnist". He may host something on CBC but he definitely is lacking on all other fronts--unless of course his article was written for entertainment. Since it was incredibly offensive, I am guessing he missed the mark there as well.
The article in question is called "Pandering to Diabetics? You bet!" The author claimed outrage that a group fundraising for children with diabetes were doing so with an ice-cream social. He equated this to serving an alcoholic "just one beer". He state that, "It’s crystal clear why rates surge when diabetics are encouraged to eat just a little of the poison. Drug company cartels, researchers, and Big Medicine who peddle this misnomer don’t want people to be healthy using food; they just love to sell drugs. With ‘friends’ like that, who needs enemies?" His article goes down hill from there.
The social was created for the Diabetes Youth Foundation of Indiana and was organized by the American Dairy Association of Indiana. The executive director Jenna Holt sent a scathing reply to the Southside Times chastising Mr. Fowler's rudeness and ignorance. She was but one of many people from the diabetes community and the Diabetes Advocacy community who attempted to set the record straight. There has even been a Facebook page created aimed at educating the newspaper.
It took me a few days before I had a chance to read the article. After hearing all of the furor it had created, I fully expected to see a retraction or apology in a recent edition of the newspaper. Imagine my surprise when I saw none! This newspaper, through its writer, insulted the entire diabetes community. It suggested that people with Type 1 diabetes should follow Drew Carey's example and they too would not have diabetes. A number of comments (close to 40 at last count) offered education and information on the realities of Type 1 diabetes including the fact that people with Type 1 diabetes can eat ice-cream and did not develop their disease because of poor eating habits.
Maybe this article was created to see the power of the diabetes community? Maybe they wanted to sell more papers and increase their readership? The many links that now lead to their site because people are so outraged and others what to see what the fuss is about has to be sending their traffic through the roof. But does that justify the article? Of course not.
They have targeted a group of people--those living with diabetes and blamed them for their disease. We know that people living with Type 1 diabetes did not "do" anything to get this disease. My two year old was not IV fed an ice-cream drip causing his pancreas to self-destruct. People living with Type 2 diabetes are also not to "blame" for their condition. It is a complicated disease that has a large genetic factor as well as other factors contributing to this metabolic condition. There are skinny people with Type 2 diabetes and there are obese people who do not have this disease.
Mr. Fowler and the South Side Times did a wonderful job of bringing attention to those living with diabetes. They tried to shame them but instead fueled them. The diabetes community has been loud and strong. They have taken exception to the rantings of a man who has refused to educate himself about the real story. They have written blogs, sent in letters to the editor, made phone calls and created Facebook pages. They are educating and working hard to correct the damage done by this misinformed article and I applaud them!
If you are going to write about diabetes do not write fiction or face the wrath of an increasingly powerful group of people living with the disease.
The article in question is called "Pandering to Diabetics? You bet!" The author claimed outrage that a group fundraising for children with diabetes were doing so with an ice-cream social. He equated this to serving an alcoholic "just one beer". He state that, "It’s crystal clear why rates surge when diabetics are encouraged to eat just a little of the poison. Drug company cartels, researchers, and Big Medicine who peddle this misnomer don’t want people to be healthy using food; they just love to sell drugs. With ‘friends’ like that, who needs enemies?" His article goes down hill from there.
The social was created for the Diabetes Youth Foundation of Indiana and was organized by the American Dairy Association of Indiana. The executive director Jenna Holt sent a scathing reply to the Southside Times chastising Mr. Fowler's rudeness and ignorance. She was but one of many people from the diabetes community and the Diabetes Advocacy community who attempted to set the record straight. There has even been a Facebook page created aimed at educating the newspaper.
It took me a few days before I had a chance to read the article. After hearing all of the furor it had created, I fully expected to see a retraction or apology in a recent edition of the newspaper. Imagine my surprise when I saw none! This newspaper, through its writer, insulted the entire diabetes community. It suggested that people with Type 1 diabetes should follow Drew Carey's example and they too would not have diabetes. A number of comments (close to 40 at last count) offered education and information on the realities of Type 1 diabetes including the fact that people with Type 1 diabetes can eat ice-cream and did not develop their disease because of poor eating habits.
Maybe this article was created to see the power of the diabetes community? Maybe they wanted to sell more papers and increase their readership? The many links that now lead to their site because people are so outraged and others what to see what the fuss is about has to be sending their traffic through the roof. But does that justify the article? Of course not.
They have targeted a group of people--those living with diabetes and blamed them for their disease. We know that people living with Type 1 diabetes did not "do" anything to get this disease. My two year old was not IV fed an ice-cream drip causing his pancreas to self-destruct. People living with Type 2 diabetes are also not to "blame" for their condition. It is a complicated disease that has a large genetic factor as well as other factors contributing to this metabolic condition. There are skinny people with Type 2 diabetes and there are obese people who do not have this disease.
Mr. Fowler and the South Side Times did a wonderful job of bringing attention to those living with diabetes. They tried to shame them but instead fueled them. The diabetes community has been loud and strong. They have taken exception to the rantings of a man who has refused to educate himself about the real story. They have written blogs, sent in letters to the editor, made phone calls and created Facebook pages. They are educating and working hard to correct the damage done by this misinformed article and I applaud them!
If you are going to write about diabetes do not write fiction or face the wrath of an increasingly powerful group of people living with the disease.
Me feeding my son a scotch...or my son's first ever ice cream cake for his birthday
Saturday, July 16, 2011
Blue Candles
For those of us in the diabetes community, the title says it all--Blue Candles. They are the candles that we light in cyberspace to remember someone with diabetes who has lost the fight. Each month, each week, we seem to see these images pop up across the online community. As profile pictures are changed on Facebook stories emerge, fears grow and the desire for a cure is that much stronger.
This time the candles are being lit for a bright, young fourteen year old girl. She was diagnosed when she was four years old. She laid down for a nap and her father found her dead on her bed a few hours later. The story sends chills down my spine. She did not die at night. She passed away sometime during the afternoon. We do not know many of the details. We only know that she was far too young to die.
I don't tell my son about these stories any more. He is almost the same age and has had diabetes for a few years more than she did. I don't light candles on my Facebook profile. I don't write about half of the stories that I hear. I can't. I read about these children--whether they are fourteen or forty, they are still someones children. My heart breaks for the parents and the families. I hug my boys a little closer. I pray a little harder. I hope for the very best.
I was reading a story one day of another child lost and of course had teared up a little. Someone told me that many children sadly die each day. It could be a complication from cancer or an asthma attack but other diseases kill as well. It was suggested that I can't focus on these deaths and be obsessed or paranoid. I reassured this person that I wasn't. I read. I mourn. My heart aches for the families and I grieve for the life cut short before its time.
It is true that our children die crossing the street, riding in cars and playing in swimming pools. As parents, we do our very best to protect them. We teach them to look both ways before crossing the street. We put them in car seats and demand that they were seat belts. We teach them water safety and we warn them about the dangers of drugs and alcohol. All in all we do our very best to guide them and pray that they will be okay.
As parents of children with diabetes, we do all of that "normal" stuff and then we do a little more. We work to help them to recognize highs and lows. We test them as often as we can. We keep tight control to prevent complications and fear going too far and having to wake to a child gone because of a low. These fears are real. They do not keep me up all night but they do wake me up at 2am to test. They do not stop me from letting my son be a child but it does make me check his pockets for glucose and his cell phone when he goes out.
As a parent, I cannot protect either of my children 24/7 for the rest of their lives. I wish I could. As much as I love watching them grow, think and spread their wings, part of me craves for the days past when I held them tight and could keep them safe in my arms. They are growing. My oldest son is driving and almost out of school. My youngest is well into his teen aged years and venturing off on his own more and more. Diabetes or not, I can only pray I have done my best, continue to do as much as I can and leave the rest up to a higher power.
Last night was my son's first night home after a few weeks away. I went to bed and woke a few hours later than I had planned to but he was low. The story of young Carson played itself out in the back of my head. After 45 minutes and a lot of juice, his blood glucose levels were back in range and I could return to bed. I said a prayer of thanks that I woke up to test him. I prayed for Carson's family. I touched my son's hair and wanted to hold him tight and kiss him gently on the forehead like I used to when he was small. He is now a teen. If I did anything beyond quietly touch his hair he would wake up creeped out and would claim nightmares for the rest of the night! Instead, I watched him sleep and I thanked God that he was alive, healthy and happy.
I will test my son at all hours. I will remind him to bolus. I will deal with late night lows. I will demand to know where he is going when he leaves the house. I will preach the evils of smoking, drug use and the dangers of too much alcohol. That is my job and I need to know that when I close my eyes I have done that job to the best of my ability. This will never guarantee the 100% safety of either of my boys but its my very best and that is all a parent can ever do.
This time the candles are being lit for a bright, young fourteen year old girl. She was diagnosed when she was four years old. She laid down for a nap and her father found her dead on her bed a few hours later. The story sends chills down my spine. She did not die at night. She passed away sometime during the afternoon. We do not know many of the details. We only know that she was far too young to die.
I don't tell my son about these stories any more. He is almost the same age and has had diabetes for a few years more than she did. I don't light candles on my Facebook profile. I don't write about half of the stories that I hear. I can't. I read about these children--whether they are fourteen or forty, they are still someones children. My heart breaks for the parents and the families. I hug my boys a little closer. I pray a little harder. I hope for the very best.
I was reading a story one day of another child lost and of course had teared up a little. Someone told me that many children sadly die each day. It could be a complication from cancer or an asthma attack but other diseases kill as well. It was suggested that I can't focus on these deaths and be obsessed or paranoid. I reassured this person that I wasn't. I read. I mourn. My heart aches for the families and I grieve for the life cut short before its time.
It is true that our children die crossing the street, riding in cars and playing in swimming pools. As parents, we do our very best to protect them. We teach them to look both ways before crossing the street. We put them in car seats and demand that they were seat belts. We teach them water safety and we warn them about the dangers of drugs and alcohol. All in all we do our very best to guide them and pray that they will be okay.
As parents of children with diabetes, we do all of that "normal" stuff and then we do a little more. We work to help them to recognize highs and lows. We test them as often as we can. We keep tight control to prevent complications and fear going too far and having to wake to a child gone because of a low. These fears are real. They do not keep me up all night but they do wake me up at 2am to test. They do not stop me from letting my son be a child but it does make me check his pockets for glucose and his cell phone when he goes out.
As a parent, I cannot protect either of my children 24/7 for the rest of their lives. I wish I could. As much as I love watching them grow, think and spread their wings, part of me craves for the days past when I held them tight and could keep them safe in my arms. They are growing. My oldest son is driving and almost out of school. My youngest is well into his teen aged years and venturing off on his own more and more. Diabetes or not, I can only pray I have done my best, continue to do as much as I can and leave the rest up to a higher power.
Last night was my son's first night home after a few weeks away. I went to bed and woke a few hours later than I had planned to but he was low. The story of young Carson played itself out in the back of my head. After 45 minutes and a lot of juice, his blood glucose levels were back in range and I could return to bed. I said a prayer of thanks that I woke up to test him. I prayed for Carson's family. I touched my son's hair and wanted to hold him tight and kiss him gently on the forehead like I used to when he was small. He is now a teen. If I did anything beyond quietly touch his hair he would wake up creeped out and would claim nightmares for the rest of the night! Instead, I watched him sleep and I thanked God that he was alive, healthy and happy.
I will test my son at all hours. I will remind him to bolus. I will deal with late night lows. I will demand to know where he is going when he leaves the house. I will preach the evils of smoking, drug use and the dangers of too much alcohol. That is my job and I need to know that when I close my eyes I have done that job to the best of my ability. This will never guarantee the 100% safety of either of my boys but its my very best and that is all a parent can ever do.
Friday, July 15, 2011
Back in the Saddle
Its eight o'clock in the morning and I am eagerly waiting for my sons to arrive. As much as I have enjoyed lounging in my bed and not stumbling around in the wee hours of the morning, I am equally happy to begin the process again tonight.
Last night I went to bed thinking, "Enjoy this. Its your last night to sleep through for a few weeks." The other thoughts going through my head were "What if I don't wake up? What if I just sleep through the nights when he is home? Who will test him? How will I set an alarm and not wake up Larry?
I woke up at two and at four am. There is no worries about eighteen years of interrupted sleep being cured in the span of two and a half weeks.
I should not have to worry about being shocked by readings that were not done or are completely out of whack. Texting and calling each day have hopefully alleviated that stress for both of us. I will simply enjoy having him back in the house again for a few weeks.
I will enjoy the testing, the nagging, the background chatter of video games. I will appreciate having someone else to take out the garbage and put away the dishes. There will be more activity in our refrigerator as he spends hours looking for another snack.
Ah, the joys of having a teenager back in the house...yes, I really do miss it when they are gone!
Last night I went to bed thinking, "Enjoy this. Its your last night to sleep through for a few weeks." The other thoughts going through my head were "What if I don't wake up? What if I just sleep through the nights when he is home? Who will test him? How will I set an alarm and not wake up Larry?
I woke up at two and at four am. There is no worries about eighteen years of interrupted sleep being cured in the span of two and a half weeks.
I should not have to worry about being shocked by readings that were not done or are completely out of whack. Texting and calling each day have hopefully alleviated that stress for both of us. I will simply enjoy having him back in the house again for a few weeks.
I will enjoy the testing, the nagging, the background chatter of video games. I will appreciate having someone else to take out the garbage and put away the dishes. There will be more activity in our refrigerator as he spends hours looking for another snack.
Ah, the joys of having a teenager back in the house...yes, I really do miss it when they are gone!
Wednesday, July 13, 2011
More than we use toothpaste
After complaining yesterday about having to begin to search for a new insulin pump and the lack of new technology, I figured that I really had to add my two cents to the DSMA July question of "What improvements of adjustments would you make to current diabetes technology?"
Years ago, I had the privledge of attending a diabetes conference in Edmonton. At that time I was shown some amazing new technologies. I looked at a pump that was simply a chip. It was about the size of a small Post-it note. Inside the Nano pump was the insulin a person required and the mechanics of a normal pump. The device would have a remote from which you would bolus and program. It looked amazing and I waited for it to appear on the market...and I waited. I have seen similar prototypes. I have seen the Omni pod but none of them were close in size or design to this new pump.
Looking for a new pump today, I see nothing that excites me the way new Cozmo technology has done it for me over the years. When I first started pump shopping over eight years ago, Cozmo led the way in bells and whistles. It had alerts that were second to none, but I quickly learned that a person wearing a pump with alarms simply turns off the alarm without paying any attention to what it was for! Well maybe not everyone but my son definitely did. I suggested that pump companies allow the pump to zap rather than beep or vibrate. I felt that the shock may stimulate my son to properly respond rather than ignore. I am still waiting for this feature.
Manufacturers seem to now feel that the pumps they have will do, despite not reaching Cozmo standards I have been told. Their focus now is integrating CGM technology. Here is my first big complaint. Our first pump was funded by family and supplies were paid out of our pocket. After a lot of lobbying, pumps and their supplies are now covered for my son in this province. CGM technology is financially out of my reach. Manufacturers, if you want to make some changes then please make technology available for everyone no matter what the size of their wallet or their insurance plan.
New glucometers, however remain in the budget of the masses for the most part now. They are often offered free with 100 test strips. Honestly, for the companies who are not doing this...I spend over $400 per month on test strips. I think that more than covers the cost of your meters over the course of a year. Please continue, or start, to offer all meters at a reduced (or free) cost to those of us using your product more than we use toothpaste.
Meters have come a long way in the past 11 years, but also seem to have stalled in technology. They also seem more focused on integrating with pumps...which is not a bad thing BUT when we used the Cozmonitor, I could not keep up with the batteries. They forgot that we test 10+ times per day and batteries have to withstand that. The idea of an integrated system is wonderful for logging and keeping track but its cost and lack of flexibility led us back on the trail of the perfect meter. Don't get me wrong, we have gone from a finger covered in blood to a pin drop of blood. We have gone from 30 aggonizing seconds to 5 dreaded seconds. These are all things that are hugely appreciated.
We still have multiple step Glucagon kits but perhaps because we never hope to use it, we just don't care as much as we do about our meters and pumps. Insulins have evolved from the unpredictable NPH and the slow regular insulins to rapid insulins and more stable long lasting insulin. This is a huge benefit for everyone.
Technology has come along way since we started on this road, but seems to have veered off on its own track lately. The move seems to be away from the general masses who have to pay their own bill. My main message...please work to perfect what we can afford and help to bring into our grasp technology that will keep our loved ones safe and healthy for years to come.
Well, that was my July entry in the DSMA Blog Carnival. If you would like to participate too, you can get all of the information at http://diabetessocmed.com/2011/july-dsma-blog-carnival/
Years ago, I had the privledge of attending a diabetes conference in Edmonton. At that time I was shown some amazing new technologies. I looked at a pump that was simply a chip. It was about the size of a small Post-it note. Inside the Nano pump was the insulin a person required and the mechanics of a normal pump. The device would have a remote from which you would bolus and program. It looked amazing and I waited for it to appear on the market...and I waited. I have seen similar prototypes. I have seen the Omni pod but none of them were close in size or design to this new pump.
Looking for a new pump today, I see nothing that excites me the way new Cozmo technology has done it for me over the years. When I first started pump shopping over eight years ago, Cozmo led the way in bells and whistles. It had alerts that were second to none, but I quickly learned that a person wearing a pump with alarms simply turns off the alarm without paying any attention to what it was for! Well maybe not everyone but my son definitely did. I suggested that pump companies allow the pump to zap rather than beep or vibrate. I felt that the shock may stimulate my son to properly respond rather than ignore. I am still waiting for this feature.
Manufacturers seem to now feel that the pumps they have will do, despite not reaching Cozmo standards I have been told. Their focus now is integrating CGM technology. Here is my first big complaint. Our first pump was funded by family and supplies were paid out of our pocket. After a lot of lobbying, pumps and their supplies are now covered for my son in this province. CGM technology is financially out of my reach. Manufacturers, if you want to make some changes then please make technology available for everyone no matter what the size of their wallet or their insurance plan.
New glucometers, however remain in the budget of the masses for the most part now. They are often offered free with 100 test strips. Honestly, for the companies who are not doing this...I spend over $400 per month on test strips. I think that more than covers the cost of your meters over the course of a year. Please continue, or start, to offer all meters at a reduced (or free) cost to those of us using your product more than we use toothpaste.
Meters have come a long way in the past 11 years, but also seem to have stalled in technology. They also seem more focused on integrating with pumps...which is not a bad thing BUT when we used the Cozmonitor, I could not keep up with the batteries. They forgot that we test 10+ times per day and batteries have to withstand that. The idea of an integrated system is wonderful for logging and keeping track but its cost and lack of flexibility led us back on the trail of the perfect meter. Don't get me wrong, we have gone from a finger covered in blood to a pin drop of blood. We have gone from 30 aggonizing seconds to 5 dreaded seconds. These are all things that are hugely appreciated.
We still have multiple step Glucagon kits but perhaps because we never hope to use it, we just don't care as much as we do about our meters and pumps. Insulins have evolved from the unpredictable NPH and the slow regular insulins to rapid insulins and more stable long lasting insulin. This is a huge benefit for everyone.
Technology has come along way since we started on this road, but seems to have veered off on its own track lately. The move seems to be away from the general masses who have to pay their own bill. My main message...please work to perfect what we can afford and help to bring into our grasp technology that will keep our loved ones safe and healthy for years to come.
Well, that was my July entry in the DSMA Blog Carnival. If you would like to participate too, you can get all of the information at http://diabetessocmed.com/2011/july-dsma-blog-carnival/
Tuesday, July 12, 2011
Blackberry? iPhone? Vibe or Veo?
Its that time again...the time when I look for a new cell phone and a new insulin pump. I never really thought of the process as similar until a few months ago. We were at our diabetes clinic when our CDE asked us if we needed approval for a new pump? Already? I am not ready for a new pump. She just smiled and said for us to think about it. "It was just like picking out a new phone" she noted, "You want something that you can be comfortable with for the next four years."
Ah!!! Deciding on a cell phone is something that I have been thinking of for a year now. An iPhone, another Blackberry, or one of the other new smart phones? So much choice, so little knowledge, such a huge decision!
Deciding on an insulin pump is no less difficult but with a lot less choice. When my son began pumping eight years ago (has it really been that long?), there were so many changes on the horizon. Smart pumps were just on the market. The choices of pumps were amazing. Every company seemed to be competing for our pump dollars and the decision making process was painful. Each year a new feature was added. Each year's pump was leaps and bounds ahead of the previous one's. You hated to have to commit to one pump for four or five years!
Fastforward to 2011 and the choice is now harder for a totally different reason...there is no choice. Unlike my phone choices, my son's insulin pump choice is down to only two. Actually there are currently three choices that we could look at but my son will not even consider an OmniPod. Sorry folks, but he does not like the pods and is happy with tubing. Its his choice and I am okay with his reasoning. That leaves us with the "big two"... Medtronic and Animas.
Medtronic has the Veo. It has CGM integrated technology and other "stuff" that I will have to look into. Animas will be introducing the Vibe in a few years which will also have this technology but we will have to wait for its Canadian approval. How much do I care about CGM? Not a lot because I can't afford the sensors. So that leaves me back to researching the pumps themselves and looking at their features.
Honestly, I haven't really done that yet. I just don't want to think about leaving our Cozmo behind. My son wants to keep his "Lean Green Pumping Machine" for as long as it is alive. I can understand his loyalty but I still have to look for its backup while the pump is being covered.
I am heading to Toronto at the end of the month for the CWD conference and hope to have the chance to look at pumps then. I need to see them, touch them, and play with them before making a decision. My son will have to have some say this time around as well.
I think for now, looking at a cell phone that I will be commited to for the next two or three years sounds a lot more fun and less stressful. Blackberry or iPhone? Android or the new HP? Touch screen or key pad? Those are decisions that I can make...well maybe not but it hurts less than thinking of pumps, pump technology and serious change!
Ah!!! Deciding on a cell phone is something that I have been thinking of for a year now. An iPhone, another Blackberry, or one of the other new smart phones? So much choice, so little knowledge, such a huge decision!
Deciding on an insulin pump is no less difficult but with a lot less choice. When my son began pumping eight years ago (has it really been that long?), there were so many changes on the horizon. Smart pumps were just on the market. The choices of pumps were amazing. Every company seemed to be competing for our pump dollars and the decision making process was painful. Each year a new feature was added. Each year's pump was leaps and bounds ahead of the previous one's. You hated to have to commit to one pump for four or five years!
Fastforward to 2011 and the choice is now harder for a totally different reason...there is no choice. Unlike my phone choices, my son's insulin pump choice is down to only two. Actually there are currently three choices that we could look at but my son will not even consider an OmniPod. Sorry folks, but he does not like the pods and is happy with tubing. Its his choice and I am okay with his reasoning. That leaves us with the "big two"... Medtronic and Animas.
Medtronic has the Veo. It has CGM integrated technology and other "stuff" that I will have to look into. Animas will be introducing the Vibe in a few years which will also have this technology but we will have to wait for its Canadian approval. How much do I care about CGM? Not a lot because I can't afford the sensors. So that leaves me back to researching the pumps themselves and looking at their features.
Honestly, I haven't really done that yet. I just don't want to think about leaving our Cozmo behind. My son wants to keep his "Lean Green Pumping Machine" for as long as it is alive. I can understand his loyalty but I still have to look for its backup while the pump is being covered.
I am heading to Toronto at the end of the month for the CWD conference and hope to have the chance to look at pumps then. I need to see them, touch them, and play with them before making a decision. My son will have to have some say this time around as well.
I think for now, looking at a cell phone that I will be commited to for the next two or three years sounds a lot more fun and less stressful. Blackberry or iPhone? Android or the new HP? Touch screen or key pad? Those are decisions that I can make...well maybe not but it hurts less than thinking of pumps, pump technology and serious change!
Labels:
cell phones,
changing pumps,
diabetes,
diabetes decisions,
insulin pumps
Monday, July 11, 2011
Another concert attended, another diabetes victory
My son recently attended his second outdoor concert. If you remember, a couple of years ago we attended an AC/DC concert that was held in a large field. At that time I was fully of trepidation. I could picture a high that required us to find a washroom at the same time as the band came on stage. I imagined lows that would see us stuck in a crowd and unable to get to more glucose. Thankfully all went fine. I had a huge bag filled with water and glucose, my back was killing me by the end of the night but there were no major crisis to worry about!
This year, my boys were going crazy counting down until the latest outdoor event. It was a Kiss concert and they had convinced their father to buy tickets for it back in December! As the day approached, all of the same old worries came flooding back to me ten fold. Would my son remember to carry everything with him? Would he pack extra insulin and sites? He was going to be five hours from his father's house. Would his cell phone work and allow him to call me if there was a problem?
In my defence, I did not worry as much as I normally would. These things did go through my mind. I did go over all of these things with my son so he would be prepared. We discussed temporary rates for the times of walking the concert grounds and sitting in the car going to and from the venue. He knew what he had to do and was confident in his own abilities. I told him that he didn't have to call me on the day of the concert. I would let him enjoy and trust that he had it under control--but if he wanted to text me that would be okay too!
He didn't text. He didn't call. I was in constant contact with his brother getting regular updates on their arrival times and who was playing on stage at any given time, but I did not mention my youngest son. I prayed all was okay. I waited until Sunday to hear about the concert and how his care had gone. And I waited. And waited.
The boys had not returned home until the wee hours of the morning on Sunday so I expected to hear from the min the afternoon. Again, my oldest touched base and I knew that they were alive. Eventually he told me that his brother's phone had once again had the biscuit. Ugh! I told him to remind his younger sibling that his father's land line still worked.
A few hours later I heard from my youngest son. He was laughing and carrying on with a friend. He had taken his phone on a walk with him and decided to see if it would work. He was surprised to hear me answer the phone. His phone was alive once again!
We discussed the concert. It was the second best he had ever seen and definitely the worst. He had only been to two concerts but was not overly impressed with this one. It rained and the bands were not what he had expected. Nonetheless, he had survived. He claimed that his readings had been good despite a site that fell out. Because he was traipsing through the woods when he called, he didn't have his meter handy. He swore it was only a three minute walk away though.
He promised to call today with the low down on the numbers. Only a few more days and he will be home but so far its looking like my little boy is growing up. Testing...most of the time. Bolusing...most of the time. Dealing with highs, lows and calling to make adjustments. I guess there is some hope after all!
This year, my boys were going crazy counting down until the latest outdoor event. It was a Kiss concert and they had convinced their father to buy tickets for it back in December! As the day approached, all of the same old worries came flooding back to me ten fold. Would my son remember to carry everything with him? Would he pack extra insulin and sites? He was going to be five hours from his father's house. Would his cell phone work and allow him to call me if there was a problem?
In my defence, I did not worry as much as I normally would. These things did go through my mind. I did go over all of these things with my son so he would be prepared. We discussed temporary rates for the times of walking the concert grounds and sitting in the car going to and from the venue. He knew what he had to do and was confident in his own abilities. I told him that he didn't have to call me on the day of the concert. I would let him enjoy and trust that he had it under control--but if he wanted to text me that would be okay too!
He didn't text. He didn't call. I was in constant contact with his brother getting regular updates on their arrival times and who was playing on stage at any given time, but I did not mention my youngest son. I prayed all was okay. I waited until Sunday to hear about the concert and how his care had gone. And I waited. And waited.
The boys had not returned home until the wee hours of the morning on Sunday so I expected to hear from the min the afternoon. Again, my oldest touched base and I knew that they were alive. Eventually he told me that his brother's phone had once again had the biscuit. Ugh! I told him to remind his younger sibling that his father's land line still worked.
A few hours later I heard from my youngest son. He was laughing and carrying on with a friend. He had taken his phone on a walk with him and decided to see if it would work. He was surprised to hear me answer the phone. His phone was alive once again!
We discussed the concert. It was the second best he had ever seen and definitely the worst. He had only been to two concerts but was not overly impressed with this one. It rained and the bands were not what he had expected. Nonetheless, he had survived. He claimed that his readings had been good despite a site that fell out. Because he was traipsing through the woods when he called, he didn't have his meter handy. He swore it was only a three minute walk away though.
He promised to call today with the low down on the numbers. Only a few more days and he will be home but so far its looking like my little boy is growing up. Testing...most of the time. Bolusing...most of the time. Dealing with highs, lows and calling to make adjustments. I guess there is some hope after all!
Labels:
concerts,
letting go,
teens with type 1 diabetes
Thursday, July 7, 2011
Does Diabetes Effect your sleep? What sleep?
Hours before I returned home to be able to access a new cell phone for my son, he got his to work. I cannot tell you the relief in just knowing that I can now call him or get a text when there is a problem. My poor oldest son is probably quite sick of hearing from me and most likely helped to get the temperamental phone fixed! Either way, my stress level has dropped down a notch and I have actually begun to do some strange new things...like sleep!
A while ago, I came across an article that asked if Type 2 diabetes effects your sleep? Thankfully I do not have to deal with Type 2 so I could not answer the question from that stand point. I do of course know how Type ONE diabetes impacts my sleep...It kills it!
Eighteen years go, I said good-bye to uninterrupted sleep when I became pregnant with my oldest son. Things did not improve with his birth. He was a horrible sleeper. He was not a typical newborn and seemed determined to take in everything that was going on in the world now! With age, well he was still a terrible sleeper. Nights saw him up at least once or twice. Nothing helped.
For some reason, this did not stop me from having another child. When my youngest son was born, his big brother still was not sleeping through the night but this new little angel was. I was shocked! I could not believe my luck! I still had one up through the night but it was better than two.
That period of euphoria ended quickly when Diabetes moved into our house. I read of "Dead in Bed" and knew that no matter when my oldest son slept through the night, I would never do so again. I frequently test my son multiple times during the night. If I wake up for some reason, I will test. My first line of thought is it gathers information and information is power in fighting the Dia-beast. My second line of thinking is of course that there is a reason I am awake and my son could be in trouble!
I have passed this second line of thinking on to my son now that he is away. During a recent conversation he told me that he had woke up at the horrific hour of 7am. He felt terrible and knew he was high. He tested and corrected. He also went back to sleep for another five hours.--no sense getting up too early! The point was that he had woke up, tested and dealt with the demands of diabetes. I reminded him that any time his body (or a stray dog) wakes him at night, he MUST test. There could be a reason that he was awake and it could be very important. I don't expect him to get this yet but the fact that he is starting to actually implement some of the things I have taught him over years gives me hope.
It gives me enough hope and peace of mind that I have actually been sleeping while he is gone. Its not a full night but pretty close. Close enough in fact that this morning I began to worry that I won't wake up when he comes home and will have to set an alarm. After all of these years, I don't think it will really be necessary. I know when he is home, I will be "on" again. I will be waking, testing, and back to the old game plan. In the meantime, I will continue to enjoy the fact that Diabetes is not here to effect my sleep!
A while ago, I came across an article that asked if Type 2 diabetes effects your sleep? Thankfully I do not have to deal with Type 2 so I could not answer the question from that stand point. I do of course know how Type ONE diabetes impacts my sleep...It kills it!
Eighteen years go, I said good-bye to uninterrupted sleep when I became pregnant with my oldest son. Things did not improve with his birth. He was a horrible sleeper. He was not a typical newborn and seemed determined to take in everything that was going on in the world now! With age, well he was still a terrible sleeper. Nights saw him up at least once or twice. Nothing helped.
For some reason, this did not stop me from having another child. When my youngest son was born, his big brother still was not sleeping through the night but this new little angel was. I was shocked! I could not believe my luck! I still had one up through the night but it was better than two.
That period of euphoria ended quickly when Diabetes moved into our house. I read of "Dead in Bed" and knew that no matter when my oldest son slept through the night, I would never do so again. I frequently test my son multiple times during the night. If I wake up for some reason, I will test. My first line of thought is it gathers information and information is power in fighting the Dia-beast. My second line of thinking is of course that there is a reason I am awake and my son could be in trouble!
I have passed this second line of thinking on to my son now that he is away. During a recent conversation he told me that he had woke up at the horrific hour of 7am. He felt terrible and knew he was high. He tested and corrected. He also went back to sleep for another five hours.--no sense getting up too early! The point was that he had woke up, tested and dealt with the demands of diabetes. I reminded him that any time his body (or a stray dog) wakes him at night, he MUST test. There could be a reason that he was awake and it could be very important. I don't expect him to get this yet but the fact that he is starting to actually implement some of the things I have taught him over years gives me hope.
It gives me enough hope and peace of mind that I have actually been sleeping while he is gone. Its not a full night but pretty close. Close enough in fact that this morning I began to worry that I won't wake up when he comes home and will have to set an alarm. After all of these years, I don't think it will really be necessary. I know when he is home, I will be "on" again. I will be waking, testing, and back to the old game plan. In the meantime, I will continue to enjoy the fact that Diabetes is not here to effect my sleep!
Monday, July 4, 2011
She's Gonna Blow!!!
After a few days of diligently testing and calling, I knew that things would have to go down hill. You cannot expect perfection in a teen away from the grasp of his mother...but you can hope!
I sadly did not have long to wait before he fell off the contacting wagon. For days I had no idea what my son's readings were like. I only had the word of his older brother and a friend of mine that he was alive and doing well. As I mentioned before, his phone is dead and catching him at his father's is basically impossible. We had agreed that he would call me each morning with his readings and to touch base.
It would appear that he decided to take the long weekend off from calling me. Mom quickly reached the boiling point. The first day of no call was okay. He was enjoying himself but he will call the next day. The next day of no call? Well, I was working to stay calm but began texting his poor older brother to death. Messages telling one child to have to the other call were wearing out my fingers. I even gave my oldest son permission to kick his little brother's butt for parental neglect but still no call.
I was going insane. I tried to figure out a fitting punishment to help him to realize that he had to contact me on a regular basis. I couldn't bring him home early. Dad has rights. I couldn't immediately take away his privileges or ground him since he isn't at home. I was sure I would hear from him at one point today. Three messages to his brother in the first few hours of the day would lead to action....and it did.
By the afternoon of day 4 of no contact he called. In a sleepy voice he wondered what the problem was. Hadn't he just called me yesterday? well at least the day before? WRONG-o!! I told him that it had been days! I reminded him that he was to call EVERY day when he got up. Continued failure to do so would result in the loss of xBox privileges when he got home. He agreed.
I really wouldn't mind if he missed a day but allowing that to happen once led to four days of no contact and blood glucose levels in the 20s (360+). It was just not an experience that I wanted to repeat. Hopefully we are back on track...until the next fall. He will have his own phone back by the end of the week so I can text him and give his brother a break from being the go-between.
I now feel better. Hearing his voice and making the required changes helped a lot. As much as I know that his father needs time with his son, and my son needs time with his family and friends, the joys of shared parenting and summer vacation can be stressful.
I sadly did not have long to wait before he fell off the contacting wagon. For days I had no idea what my son's readings were like. I only had the word of his older brother and a friend of mine that he was alive and doing well. As I mentioned before, his phone is dead and catching him at his father's is basically impossible. We had agreed that he would call me each morning with his readings and to touch base.
It would appear that he decided to take the long weekend off from calling me. Mom quickly reached the boiling point. The first day of no call was okay. He was enjoying himself but he will call the next day. The next day of no call? Well, I was working to stay calm but began texting his poor older brother to death. Messages telling one child to have to the other call were wearing out my fingers. I even gave my oldest son permission to kick his little brother's butt for parental neglect but still no call.
I was going insane. I tried to figure out a fitting punishment to help him to realize that he had to contact me on a regular basis. I couldn't bring him home early. Dad has rights. I couldn't immediately take away his privileges or ground him since he isn't at home. I was sure I would hear from him at one point today. Three messages to his brother in the first few hours of the day would lead to action....and it did.
By the afternoon of day 4 of no contact he called. In a sleepy voice he wondered what the problem was. Hadn't he just called me yesterday? well at least the day before? WRONG-o!! I told him that it had been days! I reminded him that he was to call EVERY day when he got up. Continued failure to do so would result in the loss of xBox privileges when he got home. He agreed.
I really wouldn't mind if he missed a day but allowing that to happen once led to four days of no contact and blood glucose levels in the 20s (360+). It was just not an experience that I wanted to repeat. Hopefully we are back on track...until the next fall. He will have his own phone back by the end of the week so I can text him and give his brother a break from being the go-between.
I now feel better. Hearing his voice and making the required changes helped a lot. As much as I know that his father needs time with his son, and my son needs time with his family and friends, the joys of shared parenting and summer vacation can be stressful.
Saturday, July 2, 2011
Imaginary Friends? No they are Family!
Yesterday, I opened up my Facebook account and saw a friend sharing an article from Kerri Sparling, of Six Until Me . Kerri was discussing "Those Online People" and shared a conversation she had over a coffee. It was about whether the connections made online were "real" friendships or not.
About 10 years ago, I ventured into the world of the Internet. I ran across a website aptly named www.childrenwithdiabetes.com . They had a support list for parents of children with diabetes. I signed up and immediately was in a world where people got it, they lived it, and they understood how I felt. I was no longer alone. They had answers to my questions or at least a shoulder to lean on through the tough times. Their support has never waivered after all of these years.
In the beginning, when I spoke of these people, I didn't know how to refer to them. They were my online support group. They were people that I had not met and yet they were people that I spoke with on a daily basis. I wondered how others would react if I called them "friends" but they were more than that so to not call them friends seemed to devalue them.
Over time, I realized that they were not my "online friends". They were not my i"maginary friends" as others who were struggling with the same concept would often say. These people had become my family. They were there in my darkest hours. They were there on the sunniest of days. There were disagreements. There were victories shared. We watched each other's children grow. We shared in the milestones of all of our children with diabetes and without. We laughed with each other and we cried. We were there for each other through funerals, divorces and marriages.
After a period of years, I was able to begin to put faces and voices to many of the members of my diabetes family. We traveled to various locations and were invited into the homes of these great people. We went to conferences and expanded our relationships.
I was recently asked why I go to the Friends for Life conferences. It was suggested that they were boring and not necessarily worth the money. I was shocked to the core that someone could think such a thing but then I realized that they had not walked were we had. They did not understand that FFL conferences were not just about learning--they have amazing speakers and interactive sessions that always allow me to take home something new. These conferences are a family reunion.
Its as much about learning from the amazing array of speakers that they have as it is about catching up with old friends. I enjoy having a glass of wine with the friends who have helped to get me this far in life. I like chatting and catching up with the people who were there for me when things were going wrong and I wanted to just hide under a rock and call it done. I love seeing the children who were only babies when we first "met" and have grown to be amazing, inspirational young adults.
The diabetes online community has brought together some incredible people. Together we have somehow managed to bring out the very best in one another and create some amazing changes in the world of diabetes.
I hate diabetes and like everyone else, long for a cure. I love the family that diabetes has brought to us however. Their warmth, their kindness, and their unwavering support truly make them "Friends for Life" or as I have said before, my diabetes Family.
About 10 years ago, I ventured into the world of the Internet. I ran across a website aptly named www.childrenwithdiabetes.com . They had a support list for parents of children with diabetes. I signed up and immediately was in a world where people got it, they lived it, and they understood how I felt. I was no longer alone. They had answers to my questions or at least a shoulder to lean on through the tough times. Their support has never waivered after all of these years.
In the beginning, when I spoke of these people, I didn't know how to refer to them. They were my online support group. They were people that I had not met and yet they were people that I spoke with on a daily basis. I wondered how others would react if I called them "friends" but they were more than that so to not call them friends seemed to devalue them.
Over time, I realized that they were not my "online friends". They were not my i"maginary friends" as others who were struggling with the same concept would often say. These people had become my family. They were there in my darkest hours. They were there on the sunniest of days. There were disagreements. There were victories shared. We watched each other's children grow. We shared in the milestones of all of our children with diabetes and without. We laughed with each other and we cried. We were there for each other through funerals, divorces and marriages.
After a period of years, I was able to begin to put faces and voices to many of the members of my diabetes family. We traveled to various locations and were invited into the homes of these great people. We went to conferences and expanded our relationships.
I was recently asked why I go to the Friends for Life conferences. It was suggested that they were boring and not necessarily worth the money. I was shocked to the core that someone could think such a thing but then I realized that they had not walked were we had. They did not understand that FFL conferences were not just about learning--they have amazing speakers and interactive sessions that always allow me to take home something new. These conferences are a family reunion.
Its as much about learning from the amazing array of speakers that they have as it is about catching up with old friends. I enjoy having a glass of wine with the friends who have helped to get me this far in life. I like chatting and catching up with the people who were there for me when things were going wrong and I wanted to just hide under a rock and call it done. I love seeing the children who were only babies when we first "met" and have grown to be amazing, inspirational young adults.
The diabetes online community has brought together some incredible people. Together we have somehow managed to bring out the very best in one another and create some amazing changes in the world of diabetes.
I hate diabetes and like everyone else, long for a cure. I love the family that diabetes has brought to us however. Their warmth, their kindness, and their unwavering support truly make them "Friends for Life" or as I have said before, my diabetes Family.
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