A few posts ago I posted a plea to help us raise money for diabetes research. I just wanted to clear up a few points just to make sure.
I know there are many worthy causes out there and I know for many people money is tight, so it would be a wonderful thing if you have the time just to walk with us. It would be a wonderful emotional support for our daughter Lizzie if we had a nice big crowd of walkers all wearing our soon to be created "Live for Lizzie" t-shirt. And as we take pictures of the event, it would be something nice for her to look back on to see a big crowd of walkers supporting her specifically, especially as she hits discouraging times in the future and she's tempted to slacken her efforts to manage her own blood sugar.
If you can donate money, great! There are a lot of promising avenues of diabetes research in the works and it would be a wonderful life changing event for Lizzie if a cure for her condition were found. Any money you could donate would work to keep scientists and researchers employed looking for a cure.
As a reminder, the website to donate and to register as a walker are here:
http://www.walk.jdrf.org/
If you enter "Live for Lizzie" as the team name and "Arizona" as the state, you'll find currently three walkers on our team. I'm the team captain, Scott Turley (you can also look for me as a walker), but you could donate money on behalf of any of the walkers and it will go toward the team.
If you register as a walker it will ask you for a donation goal. Feel free to fill in anything you want there, but don't feel obligated to do anything extra to raise money. Don't feel obligated, but anything you were able to do would be greatly appreciated as well. But please if you plan on walking (I know some of you are out there) be sure to register so that we can get an accurate tally of the number of walkers when we get the t-shirts made.
By the way, so many people have said so many nice things about our video and have graciously passed it on to others. There are over 200 views of the video on youtube currently, so I know many people have gotten a glimpse of what we go through every single day.
Despite the challenges, Lizzie is doing wonderful and I'm sure she'll look forward to a happy and wonderful life, but there are a growing number of children who share in this struggle. So a donation to jdrf not only helps Lizzie but helps so many other children and families.
Thank you for all of your support so far and we look forward to having a successful walk this Halloween.
The details of the walk are here:
http://walk.jdrf.org/index.cfm?fuseaction=walk.walk&eventID=4903&chapterid=4010
City: Tempe, AZ
Venue: Tempe Town Lake
Date of Walk: 10/31/2009
Registration Start Time: 7:30 AM
Walk Start Time: 9:00 AM
Length of Walk: 5K
Contact Person: Ashley Benedetto
Local Chapter: Desert Southwest Chapter
Local Chapter Phone: (602)224-1800
By the way, just a reminder, the video follows:
Showing posts with label diabetes. Show all posts
Showing posts with label diabetes. Show all posts
Tuesday, September 15, 2009
Monday, September 7, 2009
A Walk For a Cure
We are just kicking off an effort to help raise money for a cure for diabetes. Our youtube video is here:
A letter we're e-mailing friends and family is follows:
We are writing to ask for your support in a very important cause. As most of you know, our daughter, Elizabeth, was diagnosed with Type 1 Diabetes in November of last year. This October, we will be participating with thousands of other families in Juvenile Diabetes Research Foundation’s Walk to Cure Diabetes.
Since it’s founding in 1970 by parents of children with Type 1 Diabetes, JDRF has awarded more than $1.1 billion to diabetes research. More than 85 percent of JDRF’s expenditures directly support research and research-related education.
Type 1, or juvenile, diabetes, is a devastating, often deadly disease that affects millions of people—a large and growing percentage of them children.
Many people think Type 1 Diabetes can be controlled by insulin. While insulin does keep people with Type 1 Diabetes alive, it is not a cure. Aside from the daily challenges of living with Type 1 Diabetes, there are many severe, often fatal, complications caused by the disease. Diabetes is the sixth leading cause of death in the United States.
For Elizabeth, diabetes means that she must have her finger poked an average of eight times a day to check her blood glucose level, and that she must have a tiny plastic tube lodged under her skin keeping her connected to an insulin pump 24 hours a day. The pump has improved her life considerably, but it cannot prevent her from still experiencing frustrating high and low blood sugars and the accompanying symptoms of fatigue, frustration, and grogginess.
Elizabeth will never outgrow diabetes, but we have hope that JDRF will find a cure for this terrible disease within her lifetime.
Won’t you please help Elizabeth and all of the 200,000 children with diabetes by “Saying Boo to Diabetes” on October 31, 2009? There are three ways you can help:
1. The easiest way is to give a tax deductible donation via the website www.walk.jdrf.org then select Arizona as your state, and search for the “Live for Lizzie” team. Donate to the walker and fill in the information needed.
2. You can join our team, and walk with us. To join our team also go to www.walk.jdrf.org and search for “Live for Lizzie” and register as a walker. If you’d like to collect pledges in addition to walking, just forward this information to every you.
3. Send us a donation made payable to JDRF.
No donation is too small. No amount of support is too little. Your consideration is greatly appreciated.
A letter we're e-mailing friends and family is follows:
We are writing to ask for your support in a very important cause. As most of you know, our daughter, Elizabeth, was diagnosed with Type 1 Diabetes in November of last year. This October, we will be participating with thousands of other families in Juvenile Diabetes Research Foundation’s Walk to Cure Diabetes.
Since it’s founding in 1970 by parents of children with Type 1 Diabetes, JDRF has awarded more than $1.1 billion to diabetes research. More than 85 percent of JDRF’s expenditures directly support research and research-related education.
Type 1, or juvenile, diabetes, is a devastating, often deadly disease that affects millions of people—a large and growing percentage of them children.
Many people think Type 1 Diabetes can be controlled by insulin. While insulin does keep people with Type 1 Diabetes alive, it is not a cure. Aside from the daily challenges of living with Type 1 Diabetes, there are many severe, often fatal, complications caused by the disease. Diabetes is the sixth leading cause of death in the United States.
For Elizabeth, diabetes means that she must have her finger poked an average of eight times a day to check her blood glucose level, and that she must have a tiny plastic tube lodged under her skin keeping her connected to an insulin pump 24 hours a day. The pump has improved her life considerably, but it cannot prevent her from still experiencing frustrating high and low blood sugars and the accompanying symptoms of fatigue, frustration, and grogginess.
Elizabeth will never outgrow diabetes, but we have hope that JDRF will find a cure for this terrible disease within her lifetime.
Won’t you please help Elizabeth and all of the 200,000 children with diabetes by “Saying Boo to Diabetes” on October 31, 2009? There are three ways you can help:
1. The easiest way is to give a tax deductible donation via the website www.walk.jdrf.org then select Arizona as your state, and search for the “Live for Lizzie” team. Donate to the walker and fill in the information needed.
2. You can join our team, and walk with us. To join our team also go to www.walk.jdrf.org and search for “Live for Lizzie” and register as a walker. If you’d like to collect pledges in addition to walking, just forward this information to every you.
3. Send us a donation made payable to JDRF.
No donation is too small. No amount of support is too little. Your consideration is greatly appreciated.
Saturday, June 13, 2009
Proposed Cuts in Medicaid will Threaten Coverage of Diabetes Pumps
We just received this e-mail:
"Dear JDRF Families:
The state's Medicaid program, the Arizona Health Care Cost Containment System (AHCCCS) recently announced their Benefit Re-Design Proposal in an effort to address Arizona 's significant fiscal challenges and a substantial growth in the Medicaid population. One coverage cut that has been proposed is the elimination of Insulin Pumps for Adults (age 21+) living with diabetes.
This is a grave disservice to the diabetes community and we are asking for your help in fighting this proposed cut. AHCCCS is accepting public comment on this issue until June 26th via email. There is a public hearing scheduled for this Monday, June 15th at the AHCCCS Administration building in Phoenix from 3:00 to 4:30 p.m. We urge you to email Theresa.gonzales@azahcccs.gov with why coverage of insulin pumps is important for adults living with diabetes.
AHCCCS is recommending that coverage for pumps be eliminated for ADULTS ONLY, and though this may not apply to you or your loved one, it is still important that we fight this recommendation. Whether this directly affects you and your family, or whether or not you or a loved one utilizes the pump, allowing AHCCCS to eliminate this coverage will negatively the diabetes community and places access to quality care in jeopardy. When drafting your email, please include specific examples of how insulin pumps have helped your family manage their diabetes. If you or your loved one does not use the pump, please keep in mind the pump has been proven in a number of case studies to 1.) help patients better controlled blood glucose levels, 2.) benefit those suffering hypoglycemia unawareness and 3.) benefit those who are pregnant. Also remember, currently AHCCCS does not cover Diabetes Self Management Training, and that with this cut; AHCCCS will be even greater limiting access to quality care for those living with diabetes.
These recommendations will have to pass through the legislative process and once we have more information on exactly how the recommendations will move forward we will be reaching out again to you for your help in defeating the legislation before it has a chance to go to the Governor for her signature."
This irritates me to no end. We have massive waste in our health care system. But diabetes management is not one of them...
By the way here is the complete list:
Elimination:
- Emergency Dental Services
- Medically Necessary Dentures
- Genetic Testing
- Orthotics
- Insulin Pumps
- Services by a Podiatrist
- Percussive Vests
- Gastric Bypass Surgery
- Allergic Immunotherapy
- Well exams for adults
- Bone-Anchored Hearing Aids
- Cochlear Implants
Limitation:
- Non Emergency Medical Transportation (not available for waiver groups in Maricopa
and Pima counties)
- Negative Pressure Wound Therapy
- Somnography (limit to 1 study/year)
- Physical Therapy (limit to 6 visits/year)
- Durable Medical Equipment (limit to Medicare covered items only)
- Prosthetics (limit non-implantable items to $12,500/year)
- Transplants (selected limitations)
"Dear JDRF Families:
The state's Medicaid program, the Arizona Health Care Cost Containment System (AHCCCS) recently announced their Benefit Re-Design Proposal in an effort to address Arizona 's significant fiscal challenges and a substantial growth in the Medicaid population. One coverage cut that has been proposed is the elimination of Insulin Pumps for Adults (age 21+) living with diabetes.
This is a grave disservice to the diabetes community and we are asking for your help in fighting this proposed cut. AHCCCS is accepting public comment on this issue until June 26th via email. There is a public hearing scheduled for this Monday, June 15th at the AHCCCS Administration building in Phoenix from 3:00 to 4:30 p.m. We urge you to email Theresa.gonzales@azahcccs.gov with why coverage of insulin pumps is important for adults living with diabetes.
AHCCCS is recommending that coverage for pumps be eliminated for ADULTS ONLY, and though this may not apply to you or your loved one, it is still important that we fight this recommendation. Whether this directly affects you and your family, or whether or not you or a loved one utilizes the pump, allowing AHCCCS to eliminate this coverage will negatively the diabetes community and places access to quality care in jeopardy. When drafting your email, please include specific examples of how insulin pumps have helped your family manage their diabetes. If you or your loved one does not use the pump, please keep in mind the pump has been proven in a number of case studies to 1.) help patients better controlled blood glucose levels, 2.) benefit those suffering hypoglycemia unawareness and 3.) benefit those who are pregnant. Also remember, currently AHCCCS does not cover Diabetes Self Management Training, and that with this cut; AHCCCS will be even greater limiting access to quality care for those living with diabetes.
These recommendations will have to pass through the legislative process and once we have more information on exactly how the recommendations will move forward we will be reaching out again to you for your help in defeating the legislation before it has a chance to go to the Governor for her signature."
This irritates me to no end. We have massive waste in our health care system. But diabetes management is not one of them...
By the way here is the complete list:
Elimination:
- Emergency Dental Services
- Medically Necessary Dentures
- Genetic Testing
- Orthotics
- Insulin Pumps
- Services by a Podiatrist
- Percussive Vests
- Gastric Bypass Surgery
- Allergic Immunotherapy
- Well exams for adults
- Bone-Anchored Hearing Aids
- Cochlear Implants
Limitation:
- Non Emergency Medical Transportation (not available for waiver groups in Maricopa
and Pima counties)
- Negative Pressure Wound Therapy
- Somnography (limit to 1 study/year)
- Physical Therapy (limit to 6 visits/year)
- Durable Medical Equipment (limit to Medicare covered items only)
- Prosthetics (limit non-implantable items to $12,500/year)
- Transplants (selected limitations)
Saturday, May 30, 2009
Grace - Another Example
Today, my wife called me frantically (she's with the grandparents for a short visit). Her parents agreed to watch all three of our kids so that she could attend the temple with her sisters. She has been unable to go at all for a long time. Babysitting our family has taken on another level of complexity especially around mealtime - which is why we don't go out much alone, when we do, we squeeze it in between meals and we usually take our baby with us. Its just too much to ask someone to watch a diabetic 6 year old, a newborn who doesn't use the bottle or a pacifier, and a third little boy who also demands attention.
Well, diabetes is common and we live with it 24 hours a day, seven days a week so its easy to get sucked into this idea that you can thrust this disease on someone else, no matter how well-intentioned, without some pretty thorough training. But complacency can also lead to disaster, and for us it almost did.
Our daughter ate something, calories were read instead of carbs, and she was diagnosed for 170 (some-odd) carb, 4.8 units of insulin, when it should have been like 2. When my wife finally called to check in, and she heard this statistic (one unit of insulin can drop blood sugar by 100), she freaked out.
She directed her mother to see if our daughter was tired, she was. She told her to check blood sugar, she did, it read low (which means less than 20). This was low enough our daughter should have been passed out with an ambulance on its way. Instead she was playing computer games - go figure.
She was given a lot of sugar and some food. Her blood sugar went up to a safer levels, and all was well.
But we are convinced angels intervened on ours and her behalf because we just cannot understand how she was still functioning as well as she was with a blood sugar as low as hers was.
We're convinced it was grace.
Well, diabetes is common and we live with it 24 hours a day, seven days a week so its easy to get sucked into this idea that you can thrust this disease on someone else, no matter how well-intentioned, without some pretty thorough training. But complacency can also lead to disaster, and for us it almost did.
Our daughter ate something, calories were read instead of carbs, and she was diagnosed for 170 (some-odd) carb, 4.8 units of insulin, when it should have been like 2. When my wife finally called to check in, and she heard this statistic (one unit of insulin can drop blood sugar by 100), she freaked out.
She directed her mother to see if our daughter was tired, she was. She told her to check blood sugar, she did, it read low (which means less than 20). This was low enough our daughter should have been passed out with an ambulance on its way. Instead she was playing computer games - go figure.
She was given a lot of sugar and some food. Her blood sugar went up to a safer levels, and all was well.
But we are convinced angels intervened on ours and her behalf because we just cannot understand how she was still functioning as well as she was with a blood sugar as low as hers was.
We're convinced it was grace.
Saturday, November 22, 2008
My daughter has diabetes, all eyes on Barack Obama and his health care bills
The past few days have been a pretty emotional time. Its definitely not an easy thing to hear that that your six your old daughter has been diagnosed with a lifetime chronic illness for which there is no cure, for which she will have to take shots with every meal, for which she will have to count carbohydrates every time she eats and try to match the precise amounts of insulin to match those sugars so her body can get the energy she needs.
We now face a lifetime of blood sugar measurements, worrying about blood sugar too high or too low, worrying about whether an unsuspecting Sunday School teacher gives her a cupcake without telling us... Lots of people worry about this, so definitely we're not alone, we're far from unique. But it is a lot to take in.
But more than that, I've always had job anxieties. I grew up with my dad counting on the fact that he had healthy children because there were many times we lived lives without health insurance, taking trips across the boarder to get dental work done in a third world country with third world prices.
Our health care system sucks, agreed? I now live in a world, where if I lose my job and have trouble getting another one, not only will I lose my health insurance and potentially lose affordable access to insulin and suringes and blood sugar measurement tools (I'm sure there are always was to get what I need, so I'm not too worried except I'm sure I'll have to fight for everything I get), but I will have a very hard time getting Lizzie back into the health insurance system at least at affordable rates. Because health insurance companies don't want someone on their rolls that may have a lifetime of medical costs. Maybe I'm wrong with this, but that's my impressions right now.
So, I'm pretty happy right now, more happy than I was before, that Barack Obama won the election. This election matters more to me now than it did before. Because we need a health care system for everyone, we need insurance that doesn't kick folks with chronic disease out of the system.
I have now moved from the camp where I've been subsidizing some of your health care to the camp where I need you to subsidize some of mine. I know its easier to want a little societal welfare when you need it than when they want you to provide it.
But right now, I want a health care system where the healthiest of us are paying a bit more, so that the sickest don't have to pay so much. A little socialist of me? Maybe, but Darwin doesn't have to be right. We should not want to live in a world of "survival of the fittest", we should want a world where survival is an option for everyone.
And one more thing, for the un-initiated, type-1 diabetes is where the pancreas just shuts down and stops producing insulin. There's no known cause, no known cure. It can happen anytime and has nothing to do with the person's lifestyle pre-diagnosis (at least nothing that we know about). People think of it as an auto-imune disease, where the body starts attacking the cells in the pancreus that produce the insulin. I'm only just learning this sort of stuff, though, so maybe more later.
At any rate, this is a bit of my post-diabetes commentary with a little political spin (everything is politics with me).
We now face a lifetime of blood sugar measurements, worrying about blood sugar too high or too low, worrying about whether an unsuspecting Sunday School teacher gives her a cupcake without telling us... Lots of people worry about this, so definitely we're not alone, we're far from unique. But it is a lot to take in.
But more than that, I've always had job anxieties. I grew up with my dad counting on the fact that he had healthy children because there were many times we lived lives without health insurance, taking trips across the boarder to get dental work done in a third world country with third world prices.
Our health care system sucks, agreed? I now live in a world, where if I lose my job and have trouble getting another one, not only will I lose my health insurance and potentially lose affordable access to insulin and suringes and blood sugar measurement tools (I'm sure there are always was to get what I need, so I'm not too worried except I'm sure I'll have to fight for everything I get), but I will have a very hard time getting Lizzie back into the health insurance system at least at affordable rates. Because health insurance companies don't want someone on their rolls that may have a lifetime of medical costs. Maybe I'm wrong with this, but that's my impressions right now.
So, I'm pretty happy right now, more happy than I was before, that Barack Obama won the election. This election matters more to me now than it did before. Because we need a health care system for everyone, we need insurance that doesn't kick folks with chronic disease out of the system.
I have now moved from the camp where I've been subsidizing some of your health care to the camp where I need you to subsidize some of mine. I know its easier to want a little societal welfare when you need it than when they want you to provide it.
But right now, I want a health care system where the healthiest of us are paying a bit more, so that the sickest don't have to pay so much. A little socialist of me? Maybe, but Darwin doesn't have to be right. We should not want to live in a world of "survival of the fittest", we should want a world where survival is an option for everyone.
And one more thing, for the un-initiated, type-1 diabetes is where the pancreas just shuts down and stops producing insulin. There's no known cause, no known cure. It can happen anytime and has nothing to do with the person's lifestyle pre-diagnosis (at least nothing that we know about). People think of it as an auto-imune disease, where the body starts attacking the cells in the pancreus that produce the insulin. I'm only just learning this sort of stuff, though, so maybe more later.
At any rate, this is a bit of my post-diabetes commentary with a little political spin (everything is politics with me).
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