Uh oh -- I seem to be at a stand still with donations for the JDRF Ride........ and I'm getting a little worried. Last donation was the beginning of April. Suggestions? All you blog readers.... speak up. I'm thinking I have to do a 2nd email and maybe hang posters -? Ugh...
Tuesday, April 28, 2009
Donations Needed!
Uh oh -- I seem to be at a stand still with donations for the JDRF Ride........ and I'm getting a little worried. Last donation was the beginning of April. Suggestions? All you blog readers.... speak up. I'm thinking I have to do a 2nd email and maybe hang posters -? Ugh...
Monday, April 27, 2009
Friday, April 24, 2009
Letter to Insurance Company
A while ago, Betsey was having unexplained wicked high blood sugar readings throughout the night, and waking up, more often than not, sick. With ketones. Ketones are a waste product when your body burns stored fats for energy. They make you feel sick, and then can eventually lead to hospitalization or even death should they not be flushed out in a diabetic.
We have a vial of ketone strips that we will test in a sample of urine from Bets should she wake up ill or when she has a super high number, or sustained high blood sugars we can not get down even with pump adjustments and extra bolusing. On the side of the vial is this "color meter" telling you how "small or large" the ketones detected are. You match up the color the strip you dip comes up with to the colors on the bottle. Easy enough. All Betsey's siblings like it when we have to test for ketones because it's "fun" to see what color hers will come out as. Of course, it's only really "fun" if it comes up "no trace!"
So as it turns out, we realized one day at a clinic appointment, her A1C was unusually high even though the chart I keep of her numbers depicted a much lower result.
Even with those crazy high blood sugars at night.
Well, turns out, our Freestyle meter was not working properly! The nurse gave us a new meter in the office that visit, made by One Touch Ultra to use. We tested her sugar right there in the office after using her Freestyle just to compare results. The Freestyle gave us a decent reading, less than 130 mg/dl if I remember correctly. Then, within 3 minutes, we used the new meter--- 300-something!!! Basically, for about 2+ months, we had been getting inaccurate readings from the Freestyle and poor Betsey had been running so high for so long, and I had no idea! She must have felt so lousy.... but just gotten used to it. I only knew she was high on the days she'd wake up and be sick as anything. And what baffled me, was that often times, she was high, but her meter didn't read it. But she had large ketones. Didn't make sense.
So, I started to seriously consider applying for the CGMS (Continuous Glucose Monitoring System) for Betsey. This is an apparatus that is so beneficial to diabetics, and I have that much more peace when I kiss Betsey good night.
I think if children are willing to deal with another poke in their little selves, another piece of equipment attached to them, it is the best thing for them and controlling their sugars.
Our insurance was not going to cover it, however.
The initial response was a flat "No." I expected it. Yale prepped me for it. But it didn't make it easier.
In my free time, I drew up a letter to send to them imploring them to cover this for our girl. We got a record "Yes!" response (sent the letter on a Monday I believe and heard that Thursday!) and it took a matter of a month or so working with Medtronic to get the slice of gold in our hands! Now, getting it to calibrate properly and getting it to work with us--that's a whole 'nother story. It was terribly frustrating for about 6-8 weeks, but we held on, and now, I don't know what we'd do without it.
Here is the letter I wrote to our insurance company:
To Whom It May Concern;
I am writing you in regard to a denial we recently received pertaining to a request for a Continuous Glucose Monitoring System, specifically, the Paradigm by Medtronic, for my daughter, Betsey Gometz.
Betsey was diagnosed with Type 1 Diabetes on March 13, 2005. She was an innocent 7 years old. I can not begin to tell you, in short, how much of a life change this has been to our family of 8, not to mention, the emotional heartbreak it has caused us as her parents and her 5 siblings, 4 of them younger than her.
In addition to our very busy life raising a large family of children, we manage to constantly be aware of Betsey’s diabetes and make it priority #1 every day, all day. We test her blood for glucose levels, on average, 10 times a day. Many times, it is more than that. She calls me from school during the day and we are constantly going over her numbers, her boluses through her insulin pump and figuring out how to achieve that near perfect blood glucose control, considering the circumstances - nothing is as good as a real pancreas.
Diabetes does not go to sleep; this is a 24/7 job. About a year ago, when I was up in the middle of the night to test Betsey, she said to me in her sleep, “200? Correct that...” I hadn’t said a word to her. It was in the still of the night, total silence. It saddened me to realize that she never gets a break from this disease. She even dreams it - a time when her eyes are closed and her dreams should be about playing outside, bike riding, friends, candy…. She is dreaming of blood sugar numbers and boluses.
Despite our best efforts, Betsey’s HbA1c (a blood sample taken that gives us a glimpse as to her overall control in the last 8-12 weeks) has continued to rise over the last 9 months. Currently, at her last Clinic visit with Yale, she was 8.8%. Ideally, a diabetic strives for less than 7% for optimum health as they grow and become adults. At the rate we are going, Betsey’s health will deteriorate and ultimately may result in a shorter life than she is entitled. You cannot begin to understand how that makes me feel as her mother, nor can you understand how much it makes me ache for her every day with what she is going through at the tender age of 10. What a responsibility to have at her age.
Betsey’s father and I are now taking turns getting up at night to test her every 2 hours through the night since her last visit with Yale and her elevated A1c level. We usually would test her a few times a week at night just to get an idea of where she was, really being more afraid of a ‘lo’ than a ‘high.’ We set our two alarms and we take turns getting up, testing her, adjusting her pump as needed. We will wake her if she is ‘lo’ (below 70 mg/dl) and not waking on her own, or give her insulin in the form of a bolus through her pump if she is ‘high’ (above 180 mg/dl. ) We do not mind doing this on a nightly basis if it is what it takes to keep our daughter well and in good health. If there is, however, a better method available, we are ready for it! And there is: The Continuous Glucose Monitoring System we are applying for.
Lately, we have been having an issue with Betsey waking up in the morning sick. She will literally crawl out of bed, moan to us from her bed, or send her sister with whom she shares a room in to get us, telling us she does not feel well. Immediately, we will test her and she is usually above 300.
Then the ritual begins.
I race downstairs to get a new tubing and a new infusion set (two parts of the pump that are the needle into her bum, and the tubing that delivers the insulin) because maybe there is a blockage. I have to make her get out of bed despite her visibly sick self that is willing to throw up right there in her own bed, and urge her to get some urine in a cup in the bathroom. I have to test her urine for ketones, which, inevitably, are present and are ‘large.’ (The ‘larger’ the ketones means the more sick she will feel, and the more dangerous for DKA - Diabetic Ketoacidosis; a potentially fatal condition for a diabetic.) This is causing the nausea from a continued high level of blood glucose overnight or in the early morning hours.
Typically when this happens, Betsey gets to the bathroom, crying, sobbing, on the floor, holding her tummy, begging me and pleading me to help her not throw up. She asks me to stand there. Just be there. Just wait with her. Put a ponytail in. We breathe. We talk to get her mind off of it. Or I talk, she listens. I get the facecloth ready to wipe her mouth. It‘s a waiting game. I give her a large dose of insulin to bring her blood sugar down, but it takes time to take effect. Every time, she ends up throwing up - violently. If we are lucky, Betsey only throws up a handful of times and then she feels better to leave the bathroom. We retreat to a comfy chair, and resort to testing blood sugars every half an hour until the numbers start to go down with appropriate boluses through the pump (sometimes even a shot.) We test for ketones and try to flush them out. If we are lucky, she feels good and is 100% by 10:00-11:00 a.m. and I can get her off to school. We have had to make several runs to the ER for IV fluids and help with getting her better because despite our best efforts, diabetes can be very hard to control.
Another issue we are facing is Betsey’s response, or lack there of, to low blood sugars. Often by the time she tests and feels ’lo,’ she is less than40 mg/dl and many times we get the ’LO’ reading on her meter which is less than 20 mg/dl. Luckily, we have not had an experiences with seizures or passing out because of the extreme low‘s. However, I am very concerned as time passes and this becomes routine about a condition called hypoglycemia unawareness, a condition that results in loss of feeling a low blood sugar and can be potentially deadly as the diabetic lapses into a coma and the low blood sugar goes untreated. A very common problem.
Betsey will also be reaching puberty soon, which will bring with it a completely new level of blood sugar ups and downs, one we anticipate but are not looking forward to.
I am asking you to provide coverage for the Continuous Glucose Monitoring System for our Betsey at this time. Now, more than ever, we need this. It will alert her to an elevating high blood sugar so she can treat it accordingly, and likewise, alert her to a dropping blood sugar so she can treat accordingly. She will be alerted in the early morning if her blood sugar is rising and she will be able to bolus insulin prior to getting and staying high to alleviate many of the mornings waking with ketones and being sick. When Betsey plays sports, this device will play a key role in making her feel more confident as a team player. It will give us, her parents, and her doctors a better idea through graphing and hourly data as to how to adjust her pump and insulin needs for even tighter control. In the long run, supplying Betsey will this available equipment will cost you less that the hospital visits we inevitably will have to make in the years to come, along with the health issues that may arise from poor glucose control, despite rigorous management.
This monitoring system will help Betsey have better glucose control. It will help lower her A1c’s, which in turn will provide her the opportunity to lead a longer, healthier life, just as she should. As I look into Betsey’s translucent blue eyes, I see right into her soul. Her sweet ten-year-old soul is begging for a cure for Diabetes. It destroys a piece of me to know that I cannot give her that. What I hope to be able to give her is the technology that is available today to help her better control her disease. I know if you were in the same situation, you would expect nothing less for your child.
Thank you.
Sincerely,
David & Meghan Gometz
•A final note -- thank you to Connecticare for covering this major 'must have' for our girl! I am very grateful because the monthly expense to have this CGM is not affordable.
We have a vial of ketone strips that we will test in a sample of urine from Bets should she wake up ill or when she has a super high number, or sustained high blood sugars we can not get down even with pump adjustments and extra bolusing. On the side of the vial is this "color meter" telling you how "small or large" the ketones detected are. You match up the color the strip you dip comes up with to the colors on the bottle. Easy enough. All Betsey's siblings like it when we have to test for ketones because it's "fun" to see what color hers will come out as. Of course, it's only really "fun" if it comes up "no trace!"So as it turns out, we realized one day at a clinic appointment, her A1C was unusually high even though the chart I keep of her numbers depicted a much lower result.
Even with those crazy high blood sugars at night.
Well, turns out, our Freestyle meter was not working properly! The nurse gave us a new meter in the office that visit, made by One Touch Ultra to use. We tested her sugar right there in the office after using her Freestyle just to compare results. The Freestyle gave us a decent reading, less than 130 mg/dl if I remember correctly. Then, within 3 minutes, we used the new meter--- 300-something!!! Basically, for about 2+ months, we had been getting inaccurate readings from the Freestyle and poor Betsey had been running so high for so long, and I had no idea! She must have felt so lousy.... but just gotten used to it. I only knew she was high on the days she'd wake up and be sick as anything. And what baffled me, was that often times, she was high, but her meter didn't read it. But she had large ketones. Didn't make sense.
So, I started to seriously consider applying for the CGMS (Continuous Glucose Monitoring System) for Betsey. This is an apparatus that is so beneficial to diabetics, and I have that much more peace when I kiss Betsey good night.
I think if children are willing to deal with another poke in their little selves, another piece of equipment attached to them, it is the best thing for them and controlling their sugars.
Our insurance was not going to cover it, however.
The initial response was a flat "No." I expected it. Yale prepped me for it. But it didn't make it easier.
In my free time, I drew up a letter to send to them imploring them to cover this for our girl. We got a record "Yes!" response (sent the letter on a Monday I believe and heard that Thursday!) and it took a matter of a month or so working with Medtronic to get the slice of gold in our hands! Now, getting it to calibrate properly and getting it to work with us--that's a whole 'nother story. It was terribly frustrating for about 6-8 weeks, but we held on, and now, I don't know what we'd do without it.
Here is the letter I wrote to our insurance company:
To Whom It May Concern;
I am writing you in regard to a denial we recently received pertaining to a request for a Continuous Glucose Monitoring System, specifically, the Paradigm by Medtronic, for my daughter, Betsey Gometz.
Betsey was diagnosed with Type 1 Diabetes on March 13, 2005. She was an innocent 7 years old. I can not begin to tell you, in short, how much of a life change this has been to our family of 8, not to mention, the emotional heartbreak it has caused us as her parents and her 5 siblings, 4 of them younger than her.
In addition to our very busy life raising a large family of children, we manage to constantly be aware of Betsey’s diabetes and make it priority #1 every day, all day. We test her blood for glucose levels, on average, 10 times a day. Many times, it is more than that. She calls me from school during the day and we are constantly going over her numbers, her boluses through her insulin pump and figuring out how to achieve that near perfect blood glucose control, considering the circumstances - nothing is as good as a real pancreas.
Diabetes does not go to sleep; this is a 24/7 job. About a year ago, when I was up in the middle of the night to test Betsey, she said to me in her sleep, “200? Correct that...” I hadn’t said a word to her. It was in the still of the night, total silence. It saddened me to realize that she never gets a break from this disease. She even dreams it - a time when her eyes are closed and her dreams should be about playing outside, bike riding, friends, candy…. She is dreaming of blood sugar numbers and boluses.
Despite our best efforts, Betsey’s HbA1c (a blood sample taken that gives us a glimpse as to her overall control in the last 8-12 weeks) has continued to rise over the last 9 months. Currently, at her last Clinic visit with Yale, she was 8.8%. Ideally, a diabetic strives for less than 7% for optimum health as they grow and become adults. At the rate we are going, Betsey’s health will deteriorate and ultimately may result in a shorter life than she is entitled. You cannot begin to understand how that makes me feel as her mother, nor can you understand how much it makes me ache for her every day with what she is going through at the tender age of 10. What a responsibility to have at her age.
Betsey’s father and I are now taking turns getting up at night to test her every 2 hours through the night since her last visit with Yale and her elevated A1c level. We usually would test her a few times a week at night just to get an idea of where she was, really being more afraid of a ‘lo’ than a ‘high.’ We set our two alarms and we take turns getting up, testing her, adjusting her pump as needed. We will wake her if she is ‘lo’ (below 70 mg/dl) and not waking on her own, or give her insulin in the form of a bolus through her pump if she is ‘high’ (above 180 mg/dl. ) We do not mind doing this on a nightly basis if it is what it takes to keep our daughter well and in good health. If there is, however, a better method available, we are ready for it! And there is: The Continuous Glucose Monitoring System we are applying for.
Lately, we have been having an issue with Betsey waking up in the morning sick. She will literally crawl out of bed, moan to us from her bed, or send her sister with whom she shares a room in to get us, telling us she does not feel well. Immediately, we will test her and she is usually above 300.
Then the ritual begins.
I race downstairs to get a new tubing and a new infusion set (two parts of the pump that are the needle into her bum, and the tubing that delivers the insulin) because maybe there is a blockage. I have to make her get out of bed despite her visibly sick self that is willing to throw up right there in her own bed, and urge her to get some urine in a cup in the bathroom. I have to test her urine for ketones, which, inevitably, are present and are ‘large.’ (The ‘larger’ the ketones means the more sick she will feel, and the more dangerous for DKA - Diabetic Ketoacidosis; a potentially fatal condition for a diabetic.) This is causing the nausea from a continued high level of blood glucose overnight or in the early morning hours.
Typically when this happens, Betsey gets to the bathroom, crying, sobbing, on the floor, holding her tummy, begging me and pleading me to help her not throw up. She asks me to stand there. Just be there. Just wait with her. Put a ponytail in. We breathe. We talk to get her mind off of it. Or I talk, she listens. I get the facecloth ready to wipe her mouth. It‘s a waiting game. I give her a large dose of insulin to bring her blood sugar down, but it takes time to take effect. Every time, she ends up throwing up - violently. If we are lucky, Betsey only throws up a handful of times and then she feels better to leave the bathroom. We retreat to a comfy chair, and resort to testing blood sugars every half an hour until the numbers start to go down with appropriate boluses through the pump (sometimes even a shot.) We test for ketones and try to flush them out. If we are lucky, she feels good and is 100% by 10:00-11:00 a.m. and I can get her off to school. We have had to make several runs to the ER for IV fluids and help with getting her better because despite our best efforts, diabetes can be very hard to control.
Another issue we are facing is Betsey’s response, or lack there of, to low blood sugars. Often by the time she tests and feels ’lo,’ she is less than40 mg/dl and many times we get the ’LO’ reading on her meter which is less than 20 mg/dl. Luckily, we have not had an experiences with seizures or passing out because of the extreme low‘s. However, I am very concerned as time passes and this becomes routine about a condition called hypoglycemia unawareness, a condition that results in loss of feeling a low blood sugar and can be potentially deadly as the diabetic lapses into a coma and the low blood sugar goes untreated. A very common problem.
Betsey will also be reaching puberty soon, which will bring with it a completely new level of blood sugar ups and downs, one we anticipate but are not looking forward to.
I am asking you to provide coverage for the Continuous Glucose Monitoring System for our Betsey at this time. Now, more than ever, we need this. It will alert her to an elevating high blood sugar so she can treat it accordingly, and likewise, alert her to a dropping blood sugar so she can treat accordingly. She will be alerted in the early morning if her blood sugar is rising and she will be able to bolus insulin prior to getting and staying high to alleviate many of the mornings waking with ketones and being sick. When Betsey plays sports, this device will play a key role in making her feel more confident as a team player. It will give us, her parents, and her doctors a better idea through graphing and hourly data as to how to adjust her pump and insulin needs for even tighter control. In the long run, supplying Betsey will this available equipment will cost you less that the hospital visits we inevitably will have to make in the years to come, along with the health issues that may arise from poor glucose control, despite rigorous management.
This monitoring system will help Betsey have better glucose control. It will help lower her A1c’s, which in turn will provide her the opportunity to lead a longer, healthier life, just as she should. As I look into Betsey’s translucent blue eyes, I see right into her soul. Her sweet ten-year-old soul is begging for a cure for Diabetes. It destroys a piece of me to know that I cannot give her that. What I hope to be able to give her is the technology that is available today to help her better control her disease. I know if you were in the same situation, you would expect nothing less for your child.Thank you.
Sincerely,
David & Meghan Gometz
•A final note -- thank you to Connecticare for covering this major 'must have' for our girl! I am very grateful because the monthly expense to have this CGM is not affordable.
Tuesday, April 21, 2009
That Connection
Speedo was on a job site yesterday and another fella came around to unload some materials. They made small talk like men on the job site do. Then Speedo noticed a wire like tubing coming from his pocket and hanging down like Betsey's pump tubing does. Immediately, he asked, without hesitation, "Are you a diabetic?"
There have been only a handful of times I have noticed tubing on another diabetic who wears an insulin pump. But I know it when I see it. And it always makes me feel connected to them. I know I am not the one with diabetes, but I do live it every day with Betsey. I know I don't fully understand the emotion that comes with the disease, as the one who indeed has it, or the sorrow, or the anger, the hurt, the isolation, all of that... but as her mother, helping her learn to manage it, and learning with her as we go along, I have similar feelings, and I still feel the connection.
One time we were at Dairy Queen and there was a large family with 6 kids, like ours. My children, Speedo and I did "the count" that happens so many times with us... 1, 2, 3....... 6!! To look at all of them seems like alot of people. But living it does not. Unless they're all naughty and loud at once. So from time to time I glanced their way at the table they sat at, they're brood was older than ours. And then I saw it. Tubing. Of all things-- they have 6 kids and a diabetic!! We had a brief conversation with them about the diagnosis circumstances, the insulin pump of choice, management... and they were back on the road to their home in New York. Betsey didn't say much, just looked at the girl who had type 1 from time to time, didn't ask questions. But they caught each other's eye a few times, looking at each other like, I know. I'm sweet, too.
In church last summer, there was a father and son in the pew in front of us. The young boy was a handsome, blond, shaggy haired, beachy looking teenager. I saw my older daughter paying more attention to him than the mass. At the same time, she and I both noticed it.... the tubing. He had actually cut a small hole in the side of his pants for the tubing to come out of for the pump to go in his pocket. He must have worn the site in his leg, rather than his bum. We pointed it out to Bets, and for that rest of that hour, she felt that connection to the handsome beach boy in the pew in front of us. No words spoken. No handshake for the "Peace be with you" exchange. Just her own little, you have it, too connection.
So when Speedo and this young man started conversation yesterday, Betsey's diagnosis came right back to him. This young man shared his story - it is one of those things you just share when asked or you offer it to another diabetic...mothers of diabetics to fellow mothers of diabetics.....children diabetics to other child diabetics. Personally, I could talk about it forever. That and breastfeeding.
This young man was in bad shape the day he was diagnosed. He was in DKA (diabetic keto acidosis) and his sugar read above 1000 mg/dl! He relayed to Speedo that in the car ride to the ER, he felt as though he was looking through a white sheet and everything seemed to be fading. he said he felt close to death. He was largely overweight 3 months prior to his diagnosis, and over the course of a few months had lost about 120 pounds!!!
I am thankful that Betsey's diagnosis day was not nearly as bad as that..... her sugar was high, 400-something and her A1C was 10-something. She hadn't felt sick or nauseated. She was just thin and thirsty. On the brink of a possible turn for the worse.
There is some comfort in knowing about other diabetics for Betsey. A connection to a relatively "small" percentage of people who have type 1. On the off chance we meet someone with type 1, I see Betsey's eyes brighten, her ears perk. She's reminded, I'm not alone.
There have been only a handful of times I have noticed tubing on another diabetic who wears an insulin pump. But I know it when I see it. And it always makes me feel connected to them. I know I am not the one with diabetes, but I do live it every day with Betsey. I know I don't fully understand the emotion that comes with the disease, as the one who indeed has it, or the sorrow, or the anger, the hurt, the isolation, all of that... but as her mother, helping her learn to manage it, and learning with her as we go along, I have similar feelings, and I still feel the connection.
One time we were at Dairy Queen and there was a large family with 6 kids, like ours. My children, Speedo and I did "the count" that happens so many times with us... 1, 2, 3....... 6!! To look at all of them seems like alot of people. But living it does not. Unless they're all naughty and loud at once. So from time to time I glanced their way at the table they sat at, they're brood was older than ours. And then I saw it. Tubing. Of all things-- they have 6 kids and a diabetic!! We had a brief conversation with them about the diagnosis circumstances, the insulin pump of choice, management... and they were back on the road to their home in New York. Betsey didn't say much, just looked at the girl who had type 1 from time to time, didn't ask questions. But they caught each other's eye a few times, looking at each other like, I know. I'm sweet, too.
In church last summer, there was a father and son in the pew in front of us. The young boy was a handsome, blond, shaggy haired, beachy looking teenager. I saw my older daughter paying more attention to him than the mass. At the same time, she and I both noticed it.... the tubing. He had actually cut a small hole in the side of his pants for the tubing to come out of for the pump to go in his pocket. He must have worn the site in his leg, rather than his bum. We pointed it out to Bets, and for that rest of that hour, she felt that connection to the handsome beach boy in the pew in front of us. No words spoken. No handshake for the "Peace be with you" exchange. Just her own little, you have it, too connection.
So when Speedo and this young man started conversation yesterday, Betsey's diagnosis came right back to him. This young man shared his story - it is one of those things you just share when asked or you offer it to another diabetic...mothers of diabetics to fellow mothers of diabetics.....children diabetics to other child diabetics. Personally, I could talk about it forever. That and breastfeeding.
This young man was in bad shape the day he was diagnosed. He was in DKA (diabetic keto acidosis) and his sugar read above 1000 mg/dl! He relayed to Speedo that in the car ride to the ER, he felt as though he was looking through a white sheet and everything seemed to be fading. he said he felt close to death. He was largely overweight 3 months prior to his diagnosis, and over the course of a few months had lost about 120 pounds!!!
I am thankful that Betsey's diagnosis day was not nearly as bad as that..... her sugar was high, 400-something and her A1C was 10-something. She hadn't felt sick or nauseated. She was just thin and thirsty. On the brink of a possible turn for the worse.
There is some comfort in knowing about other diabetics for Betsey. A connection to a relatively "small" percentage of people who have type 1. On the off chance we meet someone with type 1, I see Betsey's eyes brighten, her ears perk. She's reminded, I'm not alone.
Sunday, April 19, 2009
Day Off
I am craving a day off! My body is tight and tired. This morning's run was in great weather, a great pace for 8 miles -- Thank you Maureen, Jen and Aim! You girls are always great to run with! But those last 3 miles after the quick stop for Gatorade, shot bloks and water (thanks M for offering to bring brownies next week!) was a l-o-o-o-n-g 3 miles! My legs were on auto-pilot at that point and it took some serious Beyonce to keep me going. I actually forwarded to one of her boppy songs to be able to keep my feet pounding the pavement. Then Amy informs us we skipped out on a few tenths of a mile because we turned before we should have -- are you kidding me? She wants me to run another few tenths of a mile at that point and there's not even like a donut waiting for me in my car?! I couldn't even do wave-my-arms-and-dance thing, I was so tired. Though not as tired as yesterday.
This weeks training plan focuses on swimming for 6 days, throwing in a run here and a bike there. But miles and miles of swimming. I think I'm going to find those free yoga pod casts and do some serious stretching during the day, in my free time. I'd love to get some gals together and do it with them for a good time -- lap top on the floor for the podcast while we all hover around the floor on our mats, bare feet and all... I can hear the session already - between Amy's extra vegetables lately, and my regular diet, I betcha even Jen might make some noise.... I couldn't do it. Seriously. Yoga is something I must do on my own. In the privacy of my own home. I gotta hand it to those who can do it in a room with others. Really. I don't think I'd last 5 minutes. I liken the case of the giggles I'd get to those I get when I'm pregnant -- it's uncontrollable, ridiculously painful when I finally stop and terribly exhausting. The trick will be to get the littles that are home with me to watch quietly and not ask questions while I attempt the poses. (Not this one...) 
(pic from sunandmoonstudio.com)
(pic from sunandmoonstudio.com)Saturday, April 18, 2009
1st 50 miles!
Ted, Kurt, Ryan, Jules, Amy & I started out on a gorgeous ride today with 51 degree temps (what a nice change!) This morning was the longest ride I have ever done! 50 miles! Actually it was just shy of 52. That's half of the JDRF ride in August...granted, we won't be going as hard (I hope) as we did today during some of the ride, but *WoW* 52 miles is a long ride. 4 of us were out for 3 hours in the saddle. Honestly, though, I can't imagine a few more miles on top of that ride, and then, getting off the bike and running a half marathon!
Kudos to Ryan who got himself a new bike and did an amazing job keeping up and going hard. He missed a sharp turn in Niantic when we were on the Niantic Tri route, blew right past the sharp turn--so excited to be flying down that hill! He did great!
I was tired and hungry all day. Cat napped here, nibbled there. That portabella mushroom panini for dinner hit the spot.
Tomorrow, we have our ladies run - 8 miles at the crack of dawn - LOAF that! Haven't checked the weather but I hope it's going to be mild like this morning, makes it much more enjoyable.
We missed the Friday 5 a few times-- oops. We'll catch up this week.
Kudos to Ryan who got himself a new bike and did an amazing job keeping up and going hard. He missed a sharp turn in Niantic when we were on the Niantic Tri route, blew right past the sharp turn--so excited to be flying down that hill! He did great!
I was tired and hungry all day. Cat napped here, nibbled there. That portabella mushroom panini for dinner hit the spot.
Tomorrow, we have our ladies run - 8 miles at the crack of dawn - LOAF that! Haven't checked the weather but I hope it's going to be mild like this morning, makes it much more enjoyable.
We missed the Friday 5 a few times-- oops. We'll catch up this week.
Monday, April 13, 2009
6.7%
Today was Betsey's clinic appointment. Being there you're surrounded with evidence of diabetes. There are bulletin boards with information about it, paperwork everywhere, advertisements for meters and strips. I'd imagine it's like walking into Betsey's mind.The appointment consists of the basics: height and weight and blood pressure check. They have Betsey leave a small sample of her sugary blood for the HbA1C to shake up in a special machine. We don't get that number right away, though. It takes a few minutes. Then we get called into a room where we sit with a CDE (Certified Diabetes Educator) or an APRN or an RN, or the Nutritionist all trained with specifics to sweet kids.
The A1c is the first thing they share with us....IF the machine is done shaking it up. I feel like I can't breathe until they tell me what it is. Sometimes, when it's not done before we get called into a room for the appointment, someone will come knock on the door, and hand over a piece of paper with the results written down. I follow the paper from the delivery person's hands, into the air, down to the clinician's hands and practically undress the folds with my eye.... inching closer to them until they say it.
6.7%. That was Betsey's A1C today. Very, very good. She was happy, I was happy. We both looked at each other and smiled. Her numbers have been all over the place lately, with no rhyme or reason, no evidence of certain basals needing to be adjusted, no patterns. I was anxious for them to look things over and see about adjustments, because I was completely at a loss. She is 11½ and the changes are starting, so this could be the reason for the quirky numbers.
She has to take her pump off and whomever we meet with goes through it for Daily Totals of insulin and her insulin boluses to insulin basal ratios, and a couple other checks. While she had it off, I heard a beeping near me, next to Betsey and immediately, without hesitation, I looked over at her and said, "What's that?" It made a beep like her sensor was bad or needed attention for a metered blood glucose... It is habitual for me when I hear a beep call to her wherever she is, to ask what it is, what her pump is saying, and figure out what to do next. Always 'on.' She looked at me, face turning red... She didn't have her pump on, the nurse had it, what the heck was that noise? The nurse laughed - there was a box of pumps on the desk right beside me and they were beeping every so often. It happened 2 more times, and even though I had the explanation, and I knew it wasn't her, I still shot a quick look at Bets each time before catching myself and remembering... it wasn't her beeping.
Every time we have her appointment, I leave with at least one tid bit that I didn't have before. Today, it wasn't a good one. My heart sunk a little. Well, more than a little. She is due for blood work, it has been 2 years. They do a cholesterol screening and thyroid levels, all that regular stuff. I delved a little deeper about it and why the necessity for it so often, she's so young. With diabetes, the risk of cardiovascular problems is greater than those of non diabetics. This I knew. What I didn't know was that it could be, can be, inevitable. Despite good, tight control. Despite good eating. Despite low A1C's.
Is Betsey going to have problems with this? Who knows. But the fact that she has such a greater chance, and problems can start developing in her late teens.... that made me sad. This is a kid who loves rainy days, of all things. She finds humor and something good in everything. She'd rather tromp through puddles on a cold rainy day when the rest of us would rather be in front of the fire, dry and cozy. She knows what life is all about. What really matters. She enjoys every day, makes the most of everything and looks for sunshine everywhere. And if she doesn't find it, rain is even better.
I asked them to hang my posters with the link to here and for the fundraising page. I am more than half way to my $3000 goal. And someday, I think and hope, someday I know it will be worth every cent!!!
So another good appointment. Betsey is healthy, despite being extra sweet :) and she's doing well, all things considered. That's my girl! ♥
Friday, April 10, 2009
Valid Fears
With all the training I'm going to be doing, eventually, it'll take me outdoors to open water swimming. Last year, the swimming was a completely scary situation, no matter the wet suit, the company with me or the tides. We actually almost resorted to bringing a tube to pull along behind us in the event of an emergency. Because we encountered an emergency.
I have asthma and it was not fully controlled last summer, this was before I ended up at a pulmonologist to help me control it. Mixed with my allergies, I was a walking wheeze machine. I also have a little bit (just a smidgy) of anxiety about open water swimming. Jen, Amy, John, Jules & Kelli had been swimming a few times at this clean and quiet lake in the middle of East BumFluck --- it was a 2 mile drive down the dirt path to get to the parking lot, and then we had to walk 5 minutes from the parking lot to the water. At 5am. With no one around to hear us scream. My heart rate was thumping from the start.
We swam in the pool until it was warm enough outside to head into Long Island Sound, and on occasion because of the ridiculous amount of jelly fish, we went into North Cove off Gini's dock, or one time, I went to.......... the lake. This was the scene of my close call with death. No joke.
I have asthma and it was not fully controlled last summer, this was before I ended up at a pulmonologist to help me control it. Mixed with my allergies, I was a walking wheeze machine. I also have a little bit (just a smidgy) of anxiety about open water swimming. Jen, Amy, John, Jules & Kelli had been swimming a few times at this clean and quiet lake in the middle of East BumFluck --- it was a 2 mile drive down the dirt path to get to the parking lot, and then we had to walk 5 minutes from the parking lot to the water. At 5am. With no one around to hear us scream. My heart rate was thumping from the start.
I put on a new wetsuit borrowed from Jen's neighbor who is a triathlete coach and it was the tightest thing I had ever felt on my chest. They are supposed to be tight, but with uncontrolled asthma and the anxiety about the swimming, my chest felt like it was completely smooshed. That morning, I was a little wheezie to begin with, and it was a humid day; my allergies were in overdrive. I got out in the lake, tried to push past the visuals of the little creepy crawlies and swimmy things that were inevitably in the water with me. I got about 15 yards out, and felt too tight. I had to take that wetsuit off. I swam back to shore and changed out of it and put on a shorty. A little better.
We swam back out into the middle of the lake and did a few back and forths, and then I felt a little funny. I panicked a little looking at how far I was from shore, I felt wheezie, but didn't know if it was my imagination....and at some point, in my heavy erratic breathing, I later find out, aspirated some water into my lung. I ended up having a full blown asthma attack in the middle of the 25 ft deep lake! It took all I had to swim to shore, Amy and Jen by my side helping me along ... my heroes as I referred to them for days after. That was the longest swim of my life!! As I tried to use my arms to propel me, it took a significant amount of energy just to breathe and it was all I could do to keep myself afloat. I could feel my body getting heavier and heavier, the feeling of the water slowly becoming my enemy.
I had Amy swim ahead to let me know when I could touch, because I had to be able to see an end point... to know how much farther I had to go. Jen swam along side me, helping me, talking to me. When we reached the shore, I climbed out, physically exhausted and unable to catch a good breath - my cough was so bad and it was so hard to breathe. I used my inhaler, coughed and coughed. Amy and Jen decided we should go to the emergency room.
We ended up at the Emergency Clinic. I had decreased lung function, my oxygen level was 81. They gave me a breathing treatment right away. I ended up staying there for a couple of hours, regrouping, catching my composure. When I left, I was completely spent and did nothing for the rest of the day. I actually took a couple of naps. It took so much out of me. I must have coughed up junk for a straight 24 hours after. Yuck.
We ended up at the Emergency Clinic. I had decreased lung function, my oxygen level was 81. They gave me a breathing treatment right away. I ended up staying there for a couple of hours, regrouping, catching my composure. When I left, I was completely spent and did nothing for the rest of the day. I actually took a couple of naps. It took so much out of me. I must have coughed up junk for a straight 24 hours after. Yuck.
It took me a week to get back in the water.
So this morning, the hot topic in the pool with PP and Dr. Coach was sharks! (Amy's goggles were a topic in and of themselves but not worth further discussing.) The swim for the 70.3 is in Narragansett Bay. I was telling Dr. Coach about the time in Watch Hill, RI last summer. We were there with several families and I snapped a bunch of photos. When I unloaded them into the pincuter (that's what Betsey's brother calls it!) this is what I saw:
(Click it for a larger view to see that fin!!)
What do you think? It is NOT rocks, the jedi at this beach is a good 25 yards away to the left, and we wouldn't have let the kiddies boogie board with rocks so close.
So my fear this year, is sharks! IF I decide to sign up! Valid fear after this picture, right?! Yikes!
Tuesday, April 7, 2009
Doing Diabetes
Everybody "does" diabetes differently. We know several diabetics, a couple of adults, a few children, and each of us manage the disease in our own way. I manage Betsey's diabetes the way I do because it is what works for me, for her. Sometimes I feel like I am always on top of Betsey about when to test....amoung other things.
"What's your number?" "What does your pump say?" "Did you remember to bolus for that snack?" "Did you correct that high?" " Did you you put your pump back on?" "Did you retest an hour after those 2 consecutive highs?" "Did you put a temp rate on for gym" " Did you test after gym?" "Did you remember to test before you ate?" "How many units do you have left" "Do you have enough strips for the day?" "Are your sugar tabs filled?"
These questions must ring through her head while she's sleeping.
This morning I got up at 4:30 to head off to the pool, and I heard Betsey's pump going off. Waaaawooowaaawoooowaaaawooooo.....
I hit the down arrow on her Minimed Paradigm for the light to go on, but the alarm is warning me to acknowledge the alert for a high blood sugar, and ... no light goes on.... which means one thing - LOW battery. Again. Man, that thing goes through a lot of batteries! I finagle through the alerts, one for the high blood sugar, one for the low battery, and I grab her DB to test her. Her sensor was "lost" at some point over night which means it stopped picking up a signal for transmission. That last number her pump took from the sensor was 200-something. As I wiggle her towards me on the edge of the bed, she groans, holds her hand out as if she's programmed to hand over a tiny fingertip, ready to succumb to that quick jolt of a poke. She mumbles, "I knew it." I think, Knew what? What is she thinking about? I'm sure diabetes related. I wonder what percentage of her dreams are diabetes related vs. "regular" dreams?
A blood glucose check reveals 179. I leave it and we'll deal with the lost sensor before school at breakfast. Off to the pool I go.
I am rigid with Betsey's diabetes management and maybe sometimes too rigid. This I know. I know that she probably hates me sometimes for being so smothering, and she'll look back as she gets older and even when she's going through rougher times as she grows, she'll hate me as much as she hates her diabetes. I have accepted this. Sort of. I am the bad guy, the constant reminder to remember to take care of her body, her sugary sweet self. I want her to learn good habits and have them stick with her. I want her to stay on top of this disease so she can live a long, long time. One day, I hope she'll forgive me for being such a pain in the ars and she'll understand... if only a little bit. I hope.
My theory is that if I am strict with her now, when she's a little bit older, doing more of it herself, her bouts of carelessness, forgetfulness and disdain for having to do it will be OK. Her slacking will be within an 'OK realm' of slack, if that makes any sense. She will have wiggle room that will still keep her somewhat together and the control loosely tight. This is my hope. This is my theory. Who knows?
My point is that just because I "do it" this way, doesn't mean it's right for every parent managing diabetes, nor every child, young adult or adult. This is what works for us.... for now.
"What's your number?" "What does your pump say?" "Did you remember to bolus for that snack?" "Did you correct that high?" " Did you you put your pump back on?" "Did you retest an hour after those 2 consecutive highs?" "Did you put a temp rate on for gym" " Did you test after gym?" "Did you remember to test before you ate?" "How many units do you have left" "Do you have enough strips for the day?" "Are your sugar tabs filled?"
These questions must ring through her head while she's sleeping.
This morning I got up at 4:30 to head off to the pool, and I heard Betsey's pump going off. Waaaawooowaaawoooowaaaawooooo.....
I hit the down arrow on her Minimed Paradigm for the light to go on, but the alarm is warning me to acknowledge the alert for a high blood sugar, and ... no light goes on.... which means one thing - LOW battery. Again. Man, that thing goes through a lot of batteries! I finagle through the alerts, one for the high blood sugar, one for the low battery, and I grab her DB to test her. Her sensor was "lost" at some point over night which means it stopped picking up a signal for transmission. That last number her pump took from the sensor was 200-something. As I wiggle her towards me on the edge of the bed, she groans, holds her hand out as if she's programmed to hand over a tiny fingertip, ready to succumb to that quick jolt of a poke. She mumbles, "I knew it." I think, Knew what? What is she thinking about? I'm sure diabetes related. I wonder what percentage of her dreams are diabetes related vs. "regular" dreams?
A blood glucose check reveals 179. I leave it and we'll deal with the lost sensor before school at breakfast. Off to the pool I go.
I am rigid with Betsey's diabetes management and maybe sometimes too rigid. This I know. I know that she probably hates me sometimes for being so smothering, and she'll look back as she gets older and even when she's going through rougher times as she grows, she'll hate me as much as she hates her diabetes. I have accepted this. Sort of. I am the bad guy, the constant reminder to remember to take care of her body, her sugary sweet self. I want her to learn good habits and have them stick with her. I want her to stay on top of this disease so she can live a long, long time. One day, I hope she'll forgive me for being such a pain in the ars and she'll understand... if only a little bit. I hope.
My theory is that if I am strict with her now, when she's a little bit older, doing more of it herself, her bouts of carelessness, forgetfulness and disdain for having to do it will be OK. Her slacking will be within an 'OK realm' of slack, if that makes any sense. She will have wiggle room that will still keep her somewhat together and the control loosely tight. This is my hope. This is my theory. Who knows?
My point is that just because I "do it" this way, doesn't mean it's right for every parent managing diabetes, nor every child, young adult or adult. This is what works for us.... for now.
Sunday, April 5, 2009
Friday 5 - Things I always carry with me.
Betsey writes:
These are five things that I always carry with me.
These are five things that I always carry with me.
- I always have my sugartabs or juice.
- I always, always carry my DB (diabetes bag). It has all my testing supplies in it.
- I always remember my cell phone in case I need to call my mom or dad.
- I always carry my lunchbox with extra juice and the glucogon if we're going somewhere farther away from Old Saybrook.
- And most importantly, I never forget my smile. ;-)
(#5 is just to make me smile. She's a wee bit corny like that from time to time.)
What a weekend!
(John, Amy and me -thanks for the pic Jules)
(Amy, Jill, Jen and me - all smiles after 8 miles!)
What a great weekend of outdoor exercise! Early Saturday morning, John, Jules, Amy & I hooked up for a ride. I was supposed to ride to Amy's, but, OOoo the idea of bears lurking in the dark got to me - too scary! So I drove. Soon it will be light before I even open my eyes, the time of the year I love! You can be out at 4:30 in the morning, the first light of the summer day and it's so quiet and warm! It's the perfect time of day, as far as I'm concerned!
We started out for a 33+ mile ride and picked up several other peddlers along the way. I think there was a total of 11 of us, all different riding levels, all with great spirits and attitude. I am happy to say, everyone steered clear of my nasal spray, whether it was my effort or theirs, doesn't matter.... it was a "clean" ride. It felt so good to be back out on the road-so much different than spin class. And the bike makes a world of difference!
This morning Amy, Jill, Jen and I went for an 8 mile flat run. Jen's goal this year is a half marathon and I've commited myself to running it with her. Running is my favorite thing and the idea of being able to run 13 miles and feel good, is very exciting to me. So every month until the half, we'll be upping our milage. It's a new month, so 8 miles it was today. Kudos to Jill for running that distance - it has been years for her, 20 I think she said. Quite an accomplishment this morning! I had mapped out a route on map my run and at one point, the turn to continue on wasn't clear, and I think....well, I know, we went too far and had to cut through a few backyards to get back on track. Luckily, they were summer homes, so I don't think we disturbed anyone's coffee hour!
On the way back home, towards the end of the run, the bright sun was just warm shining down on us through the bare trees and I got a little jolt of that yummy runner's high that I love so much. I looked over at Jen, the one who could "never run more than 3 miles" and gave her a little arm squeeze and a tushie smack and said to her, "You're on your 8th mile!!"
This summer is a big one for athletic events for me and those I train with. We have several Sprint Triathlons we're going to be doing as a prelude and as training to a big triathlon, a 70.3 Half Ironman in Rhode Island. I have not signed up for this event.......yet...... I am being urged on to do so, but I don't know that I'm mentally there yet. It's a biggie... 1.2 mile swim, 56 mile bike and then a 13.1 mile run - that's right, a half marathon after all that!!! I have to really think about that. I'm going along with all the training for it with Amy, who is signed up and commited, so I might as well, right? Hmmm.....
And then, of course, at the end of August is the 105 mile bike ride for Betsey in Vermont. That will be the final 'hurrah' to the season for me. I'm hoping all the cross training will benefit me on the long bike ride. Either that or extra Dairy Queen will help me out!
Friday, April 3, 2009
Morning Sweats
This morning Betsey woke up low. Very low.It was 10 minutes until the bus was coming and I went in her room after calling to her... no answer...way after she had been woken up.... I said, "Bets--you're going to miss the bus, wake up!" She was sweating. Immediately I knew she was low. I asked Libs to run down and grab a juice and I pulled out her DB (affectionate name for her Diabetes Bag.) 41! Yikes. And boy was she feeling it. She actually felt it as she laid there but was so hungry and tired from the low she didn't get up. This is my fear. Middle of the night lows like this where she just can't get it together to get up.
She sucked a juice box down and wanted to eat. I lead her downstairs, grabbed granola and she nibbled that while I made toast. The problem with the lows like this is she wants to eat so much at once, eat, eat, eat and you just can't do that.
A low or high in the morning sets the tone for the day. She's had a hard time regrouping from this low, we were late off to school, and she was a little less patient with other little people in the house.
Last night her sensor "ended." It lasts 6 days. Then we have to replace the site for it. She does not like to do the sensor change, the needle is SO big and the site hurts her - it's tender for the day we change it. We usually take a day off in between the sensor changes. But we seldom put it in during the morning, mostly because of the discomfort and she doesn't want that nagging ache at school first thing. I wouldn't either.
Having the CGMS is so vital to Betsey's overall blood sugar control - had she had it on last night, if she was dipping low in the wee hours of the morning, or even earlier than that, as I assume was the case in this morning's low, the sensor woud alarm her by sending a signal to her pump which would make a continuous beep and a vibration. If it didn't wake her, Libs would surely hear it as she shares a room with her, or eventually I would - so we hope.
A quick check on the way out of the car into school - 277 mg/dl!! Whoops--she forgot to bolus for the extra 2 pieces of toast!
Up and down-- this should be a pattern today.
Thursday, April 2, 2009
Clinic
Every 3 months Betsey has an appointment with her endocrinologist at Yale. It's a lengthy appointment, going over any printouts I remember to bring in for her sensor readings, we bring her journal with her numbers I record, go over her pump settings... She gets weighed, measured, has to do a finger stick for a special test called an HbA1c.We go into a room and meet with either a nurse or the dietitian and discuss all aspects of diabetes and any questions I have - Betsey remains mute at these appointments. She actually doesn't like going. She doesn't have a good reason for not liking it, she says she "just doesn't like it." She loves all the women we meet with, one time we even met with the Dr. himself, early on in Betsey's diagnosis. I think she gets nervous about her A1C, honestly. Maybe I put too much stress about the A1C on her for the 2 weeks leading up to clinic. I say things like, "oOooO Clinic in "X" # of days... wonder what that A1C is?!" like it's a game and we have to win. Win against her non-working pancreas. Beat the thing at it's nasty game. Always prove to it that the pump will suffice because it decided to stop working on her all of a sudden.
"In the blood stream are the red blood cells, which are made of a molecule, haemoglobin. Glucose sticks to the haemoglobin to make a 'glycosylated haemoglobin' molecule, called haemoglobin A1C or HbA1C. The more glucose in the blood, the more haemoglobin A1C or HbA1C will be present in the blood." (I pulled that from a webpage {http://medweb.bham.ac.uk/easdec/prevention/what_is_the_hba1c.htm} because I couldn't have said it any better!)
The A1C measures the sugars in Betsey's blood over an 8-12 week period. Based on the # we get, it tells us how well controlled her diabetes is. When she was diagnosed, she was 10.something%. A non diabetic is around 5-5.5% and diabetic strives to have this # less than 7% for optimum health. Betsey's last check up we had gone down 2 points again and if I remember correctly, it was a 6.4%. I always get a little antsy before the appointments, try to reel her in a little, not that 1-2 weeks of super tight control will affect it that much, because it goes out as far as 12 weeks. But I get all worked up about that number-I am a 'numbers girl.'
Our last visit was primarily about healthier eating. Betsey has always been a challenge to feed - super sensitive gag reflex since she was about 2 and beyond picky. One time, when she was about 3 years old, the mean parents we are, she started to gag at the idea of having a strawberry and we thought it was so funny.... this little tiny person gagging looking at food. So I grabbed a strawberry, smooshed it and smeared it on the chair right where she would grab to get down. She was done at the table, grabbed the chair, realized there was strawberry goo on her and immediately started to gag and dry heave. It was so funny!! It's ironic that this is the child who now has to have so much of her life revolve around food - more so than the rest of us. And it's crucial for her to eat those strawberries now, as it is for all of us, but for Betsey, she has to be more diligent because of the chances of leading into health problems should she not be conscientious of her habits.
Needless to say, Betsey is doing much better with her eating since our last visit and we are pleased to say she eats broccoli.........with her nose plugged. Hey.... she eats it!
Our clinic appointment is next week, and as much as I look forward to the visit, Betsey does not. I always leave it feeling refreshed with information, a slight bit more confident in being able to help Betsey manage her diabetes, and content with the hands she is in.
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