I've been trying to think of things to do at my Lee Iacocca walk. I want to have a booth with diabetes education in it. I truly believe that the public needs to know what Type1 is all about so they will be more willing to give money for research.
One other thing I'd like to do is have a presentation called "The Faces of Diabetes". I have access to a big screen and a projector and have a little knowledge when it comes to making a presentation. What I would like to do is show a little presentation of people who live with this disease on a daily basis. I want people to know how many lives this disease touches.
What do you think? Do you want to be included? If so, email me a picture of you or the pwd. Include as much info. as you're comfortable sharing (first name, age at diagnosis, diagnosis date, state in which you live, etc.) If you don't want to share any info. that will be fine too. (pennylane5001@mchsi.com)
So, you OC'ers, you lurkers, everyone. Help me out. Help me make this disease real to other people.
Sunday, August 27, 2006
Friday, August 25, 2006
The cure debate
Sandra's post tonight got to me. It didn't just bring on the tears, it also made me evaluate the whole "hope for a cure" thing.
We attended a ballgame tonight at Michael's school. It's 45 minutes away. Before getting in the car to come home we checked his sugar. It was 488. (Wow, I handled it so well at the time, but now just typing the number is making me cry. I just want to inject right here, for the bizillionzth time, I HATE THIS DISEASE!!!!!!!)
Anyway, on the ride home we talked about the upcoming walk. And, I can't think of the walk without thinking of a cure. It seems that most people are very hopeful for a cure in the beginning, but as the years drag on they become less hopeful. I started out with no hope at all. For the first several months I would see someone post about a cure and just think "yeah, right". That's how I coped at the time.
But, I've been doing some research. There are a lot of great, great studies going on. But, my hope is all wrapped up in Dr. Faustman's research. I have read a great deal about what she is trying to do. I have seen a couple of interviews. This woman is for real. The first time I ever saw an interview with her, I just stared at her in awe. All I could think was of how many countless hours she has spent trying to cure my son and others like him. She's devoted her life to it. I cannot even begin to express the gratitude that I feel for her and the many others like her that are searching for a cure for this disease and all the other diseases out there too.
One reason I have to believe there will be a cure is because to believe otherwise would negate everything these people have done. I have so much admiration for these people (researchers). I can't just say, "I admire them, but I think they're wasting their time." Even if what they are doing doesn't find a cure, it still brings us closer to a cure. They can say "OK, tried that. It didn't work. Let's move on to something else."
But, the main reason I have to believe there will be a cure is because my baby believes that one day he will be cured. He, like Sandra's son Joseph, doesn't look into the future and see himself taking insulin. He sees himself "eating all the sugar I want" (direct quote from Riley) How do I look him in the eyes and say "Nope, don't think so." ? I can't. I won't.
While I will never try to squelch his hope, I do try my best to give him realistic expectations. For example, I have told him several times that if there is going to be a cure it is a long ways off. I don't put a time frame on it. Although, the number in my head is 10 years. I don't know why. But, Riley tells me he is going to get the cure when he's 10. That's 6 years from now. I just hope and pray that he knows something that I don't.
I don't feel that I've been very coherent with trying to get my point across here. What I'm trying to say is that everyone has their own coping mechanisms. Some people say there will never be a cure because if there isn't one they will just be disappointed. Some believe there will be a cure because they can't imagine dealing with it for the rest of their lives.
My point is, they are both right. I don't think anyone should try to convince someone of the cure if they don't want to be. And, I certainly don't believe that anyone should try to squash someone else's hope. Because, either way, they are doing what needs to be done to cope with the situation they are in.
But me, I'm on the hope team. I cannot imagine giving up and saying that Riley will never be cured. I just can't. Will I still feel this way 15 years from now if there's still not a cure? I don't know. I hope I won't have to find out.
We attended a ballgame tonight at Michael's school. It's 45 minutes away. Before getting in the car to come home we checked his sugar. It was 488. (Wow, I handled it so well at the time, but now just typing the number is making me cry. I just want to inject right here, for the bizillionzth time, I HATE THIS DISEASE!!!!!!!)
Anyway, on the ride home we talked about the upcoming walk. And, I can't think of the walk without thinking of a cure. It seems that most people are very hopeful for a cure in the beginning, but as the years drag on they become less hopeful. I started out with no hope at all. For the first several months I would see someone post about a cure and just think "yeah, right". That's how I coped at the time.
But, I've been doing some research. There are a lot of great, great studies going on. But, my hope is all wrapped up in Dr. Faustman's research. I have read a great deal about what she is trying to do. I have seen a couple of interviews. This woman is for real. The first time I ever saw an interview with her, I just stared at her in awe. All I could think was of how many countless hours she has spent trying to cure my son and others like him. She's devoted her life to it. I cannot even begin to express the gratitude that I feel for her and the many others like her that are searching for a cure for this disease and all the other diseases out there too.
One reason I have to believe there will be a cure is because to believe otherwise would negate everything these people have done. I have so much admiration for these people (researchers). I can't just say, "I admire them, but I think they're wasting their time." Even if what they are doing doesn't find a cure, it still brings us closer to a cure. They can say "OK, tried that. It didn't work. Let's move on to something else."
But, the main reason I have to believe there will be a cure is because my baby believes that one day he will be cured. He, like Sandra's son Joseph, doesn't look into the future and see himself taking insulin. He sees himself "eating all the sugar I want" (direct quote from Riley) How do I look him in the eyes and say "Nope, don't think so." ? I can't. I won't.
While I will never try to squelch his hope, I do try my best to give him realistic expectations. For example, I have told him several times that if there is going to be a cure it is a long ways off. I don't put a time frame on it. Although, the number in my head is 10 years. I don't know why. But, Riley tells me he is going to get the cure when he's 10. That's 6 years from now. I just hope and pray that he knows something that I don't.
I don't feel that I've been very coherent with trying to get my point across here. What I'm trying to say is that everyone has their own coping mechanisms. Some people say there will never be a cure because if there isn't one they will just be disappointed. Some believe there will be a cure because they can't imagine dealing with it for the rest of their lives.
My point is, they are both right. I don't think anyone should try to convince someone of the cure if they don't want to be. And, I certainly don't believe that anyone should try to squash someone else's hope. Because, either way, they are doing what needs to be done to cope with the situation they are in.
But me, I'm on the hope team. I cannot imagine giving up and saying that Riley will never be cured. I just can't. Will I still feel this way 15 years from now if there's still not a cure? I don't know. I hope I won't have to find out.
Tuesday, August 22, 2006
A little reminder
A while back, Riley was showing some interest in soccer. So, when we saw an article in the paper that showed they had sign-ups for soccer for Riley's age, we signed him up.
To say I wasn't a little anxious would be a lie. I wasn't too worried, but I did think about what the extra activity might do to his sugar. The thought of him falling out on the field did cross my mind.
Riley had his first practice today. I felt pretty good about it. He had just eaten about an hour prior to practice and was 292 when practice began. No real worry of him dropping too low.
Even so, when we pulled up to the field, I reminded Riley if he started to feel like his sugar was low that it was very important to tell someone. He said, " Well, Mom, I bet someone else here has diabetes too." I told him "probably not". All the time thinking we'd be lucky if anyone there even knew what Type 1 diabetes is.
His coach is a woman. About half way through the practice I noticed what was written on her T-shirt: Camp Needles In The Pines At first I wasn't sure why that sounded so familiar. But, when I realized where I had heard it before, my heart started to beat a little faster.
Camp Needles In The Pines is a camp in NC for children with diabetes. All I could think was "Why is she wearing that shirt? Maybe she works at the camp. Maybe her child has D." I quickly scanned the field for any signs of a kid with a pump. I didn't see one. Still, she had to be associated with diabetes in some way.
When practice was over, she came up to ask me if Riley was doing OK. She knew he has D because I had put it on the soccer application. Turns out she's a diabetes educator! That really helped to ease my nerves a bit. At least she knows something about diabetes and will most likely know when to alert me that something may be going on with Riley.
She brought snacks and juice for all the kids. She even had sugar free koolaide just for Riley. She made sure to tell me that it had 2g carbs in it.
I just feel so blessed right now. I don't think it's a coincidence that the soccer league that we signed Riley up for has a diabetes educator as a coach. And, she got to be Riley's coach. She's coaching Riley's age group because she has a son that is Riley's age.
Sometimes I get so wrapped up in the sugars and trying to control them that I forget who is really in charge. I think this just might be God's way of reminding me I'm not alone in all of this. He's watching out for Riley too.
To say I wasn't a little anxious would be a lie. I wasn't too worried, but I did think about what the extra activity might do to his sugar. The thought of him falling out on the field did cross my mind.
Riley had his first practice today. I felt pretty good about it. He had just eaten about an hour prior to practice and was 292 when practice began. No real worry of him dropping too low.
Even so, when we pulled up to the field, I reminded Riley if he started to feel like his sugar was low that it was very important to tell someone. He said, " Well, Mom, I bet someone else here has diabetes too." I told him "probably not". All the time thinking we'd be lucky if anyone there even knew what Type 1 diabetes is.
His coach is a woman. About half way through the practice I noticed what was written on her T-shirt: Camp Needles In The Pines At first I wasn't sure why that sounded so familiar. But, when I realized where I had heard it before, my heart started to beat a little faster.
Camp Needles In The Pines is a camp in NC for children with diabetes. All I could think was "Why is she wearing that shirt? Maybe she works at the camp. Maybe her child has D." I quickly scanned the field for any signs of a kid with a pump. I didn't see one. Still, she had to be associated with diabetes in some way.
When practice was over, she came up to ask me if Riley was doing OK. She knew he has D because I had put it on the soccer application. Turns out she's a diabetes educator! That really helped to ease my nerves a bit. At least she knows something about diabetes and will most likely know when to alert me that something may be going on with Riley.
She brought snacks and juice for all the kids. She even had sugar free koolaide just for Riley. She made sure to tell me that it had 2g carbs in it.
I just feel so blessed right now. I don't think it's a coincidence that the soccer league that we signed Riley up for has a diabetes educator as a coach. And, she got to be Riley's coach. She's coaching Riley's age group because she has a son that is Riley's age.
Sometimes I get so wrapped up in the sugars and trying to control them that I forget who is really in charge. I think this just might be God's way of reminding me I'm not alone in all of this. He's watching out for Riley too.
Saturday, August 19, 2006
A Special Bond
Michael came home from his first day back at school with some disturbing news. All the teachers had to stand up and do the "what I did over the summer" thing. A fellow teacher stood up and announced that her six year old daughter was diagnosed with Type 1 diabetes this summer.
Michael talked with her afterwards. Best I can gather she felt lost and scared and overwhelmed. I felt such empathy towards her.
Hearing of this little girl made me think back to those first few weeks after Riley's diagnoses. At first, I was just numb. I think I was in shock for a while. Actually, I know I was. Everything seemed surreal. I was poking my 3 year old with needles every day. That just couldn't be right. But, it was. And, over the first few weeks I had to somehow grasp that it wasn't going away.
Before diabetes entered our lives I had always thought I was a strong person. I could withstand whatever came my way. I had what I call the "nurse mentality". I was very good at being strong and keeping a level head in bad situations. If I needed to cry when the crisis was over, I could. But, those break downs hardly ever came.
After the shock and numbness wore off, I realized the "crisis" in this particular situation was never going to be over. I broke down several times a day. I'd cry myself to sleep at night. I'd sit on the edge of Riley's bed and watch him sleep as his sheets became damp with my tears.
I'd never cried like that before. This crying came from the depths of my soul. Places I never knew existed. I saw no end in site to my grief .
This super woman had found her kryptonite. Something bad happening to my child had incapacitated me. I felt weak and inadequate. I felt like a failure.
That's why when Michael came home with the news about his co-worker, I got a sinking feeling in the pit of my stomach. I don't know her. I don't even know her name. But, I know how she feels and my heart aches for her and her daughter.
When I went to the mailbox yesterday there was a special envelope. I knew it was coming and as soon as I saw it a huge grin spread over my face. In it was a donation for Walk Of Hope. This donation came from a woman I've never met. I have no idea what she looks like. She lives hundreds of miles away. But, yet, she felt a need to send a donation for our walk.
Why would she do this? Because her son was diagnosed with D when he was 3 1/2. Because she's felt all the same feelings about this disease that I have. Because, she looks into her son's eyes and envisions a day when he won't need insulin anymore.
We parents of children with diabetes have a special bond. I've rejoiced over Daniel's run of good blood sugars. I've cried over Danielle's diagnosis of Celiacs. I've swelled with pride over how Joseph stood up in front of a crowd and shared his experience with diabetes.
As much as I thought I'd lost my strength in the beginning of this journey, I now realize that I only stumbled. We parents of children with diabetes are a hearty crew. We are strong. We don't have a choice but to be. We all stumble occasionally and sometimes we fall. But we pick ourselves up and brush off our knees and trudge ahead for the sake of our children. They are watching us. They need us.
While I wish Riley had never gotten this disease, I am honored to be counted among the Sandras, Vivians, Jamies, Beckys....of the world. We do have a special bond.
But, I still mourn when another parent joins our ranks, because that bond we share is cemented in heartache.
Michael talked with her afterwards. Best I can gather she felt lost and scared and overwhelmed. I felt such empathy towards her.
Hearing of this little girl made me think back to those first few weeks after Riley's diagnoses. At first, I was just numb. I think I was in shock for a while. Actually, I know I was. Everything seemed surreal. I was poking my 3 year old with needles every day. That just couldn't be right. But, it was. And, over the first few weeks I had to somehow grasp that it wasn't going away.
Before diabetes entered our lives I had always thought I was a strong person. I could withstand whatever came my way. I had what I call the "nurse mentality". I was very good at being strong and keeping a level head in bad situations. If I needed to cry when the crisis was over, I could. But, those break downs hardly ever came.
After the shock and numbness wore off, I realized the "crisis" in this particular situation was never going to be over. I broke down several times a day. I'd cry myself to sleep at night. I'd sit on the edge of Riley's bed and watch him sleep as his sheets became damp with my tears.
I'd never cried like that before. This crying came from the depths of my soul. Places I never knew existed. I saw no end in site to my grief .
This super woman had found her kryptonite. Something bad happening to my child had incapacitated me. I felt weak and inadequate. I felt like a failure.
That's why when Michael came home with the news about his co-worker, I got a sinking feeling in the pit of my stomach. I don't know her. I don't even know her name. But, I know how she feels and my heart aches for her and her daughter.
When I went to the mailbox yesterday there was a special envelope. I knew it was coming and as soon as I saw it a huge grin spread over my face. In it was a donation for Walk Of Hope. This donation came from a woman I've never met. I have no idea what she looks like. She lives hundreds of miles away. But, yet, she felt a need to send a donation for our walk.
Why would she do this? Because her son was diagnosed with D when he was 3 1/2. Because she's felt all the same feelings about this disease that I have. Because, she looks into her son's eyes and envisions a day when he won't need insulin anymore.
We parents of children with diabetes have a special bond. I've rejoiced over Daniel's run of good blood sugars. I've cried over Danielle's diagnosis of Celiacs. I've swelled with pride over how Joseph stood up in front of a crowd and shared his experience with diabetes.
As much as I thought I'd lost my strength in the beginning of this journey, I now realize that I only stumbled. We parents of children with diabetes are a hearty crew. We are strong. We don't have a choice but to be. We all stumble occasionally and sometimes we fall. But we pick ourselves up and brush off our knees and trudge ahead for the sake of our children. They are watching us. They need us.
While I wish Riley had never gotten this disease, I am honored to be counted among the Sandras, Vivians, Jamies, Beckys....of the world. We do have a special bond.
But, I still mourn when another parent joins our ranks, because that bond we share is cemented in heartache.
Tuesday, August 15, 2006
Long time, no post
I have been neglecting the blog lately, but it hasn't been all me fault. The filter on my computer has decided to block blogger.com. So, I haven't been able to post. I am currently posting from my work computer (not on company time). I am trying to get this straight with the filter people. I have been reading blogs, but because of the filter am not able to comment on any that are written on blogspot. So, I haven't dropped off the face of the earth. I've just been blocked.
An update on the arm: I got my splint removed on July 26th and have been back at work since then. I am taking physical therapy, because there are still things I cannot do with my hand. ( I am still typing with one hand) But, I see progress every day in what I can do.
The walk: Walk of Hope is scheduled for October 7th. I have raised $325.00 so far ($300 of that came from local businesses). I have only had two people to volunteer to be on the team and help raise money. (out of about 60 people that have been asked) But, I'm trying to stay positive. Every little bit of money helps. Every little bit of money brings us closer to a cure.
Speaking of a cure, I got this from Vivian's blog. I know there are some that think there will never be a cure, but just humor me and go here and check out what Dr. Faustman has to say. Also, check out the podcast on the same page.
I was very impressed with what she had to say. She wasn't trying to give any false hope. She was very realistic that if what she is doing turns out to be a cure, it will still be a ways off. Right now, she is getting human blood samples and trying to identify the bad T cells that are causing the destruction of the beta cells.
On the diabetes front things are the same... up and down. We've had a few 300s and a few 60s and several numbers in between. But, Riley is happy and healthy. And, that's what really matters at the end of the day.
An update on the arm: I got my splint removed on July 26th and have been back at work since then. I am taking physical therapy, because there are still things I cannot do with my hand. ( I am still typing with one hand) But, I see progress every day in what I can do.
The walk: Walk of Hope is scheduled for October 7th. I have raised $325.00 so far ($300 of that came from local businesses). I have only had two people to volunteer to be on the team and help raise money. (out of about 60 people that have been asked) But, I'm trying to stay positive. Every little bit of money helps. Every little bit of money brings us closer to a cure.
Speaking of a cure, I got this from Vivian's blog. I know there are some that think there will never be a cure, but just humor me and go here and check out what Dr. Faustman has to say. Also, check out the podcast on the same page.
I was very impressed with what she had to say. She wasn't trying to give any false hope. She was very realistic that if what she is doing turns out to be a cure, it will still be a ways off. Right now, she is getting human blood samples and trying to identify the bad T cells that are causing the destruction of the beta cells.
On the diabetes front things are the same... up and down. We've had a few 300s and a few 60s and several numbers in between. But, Riley is happy and healthy. And, that's what really matters at the end of the day.
Thursday, August 03, 2006
hope, hoPE, HOPE
I received my JoinLeeNow news letter today and was so excited to read about how the Faustman trials are going and about the other trials that are being supported by The Iacocca Foundation.
This story got my attention more than others:
Dr. Jerry Nadler – $370,000
University of Virginia, Diabetes and Hormone Center of Excellence Charlottesville, VA
Clinical trial in type 1 diabetes
Lisofylline (LSF) is a novel small molecule immunomodulator that has been shown to be effective in halting autoimmune damage to pancreatic insulin producing beta cells in experimental models of type 1 diabetes. LSF does not impair the normal immune system but reduces the activity of a key cytokine called Interleukin-12 which plays a major role in leading to type 1 diabetes.
Recent evidence suggests that the body is attempting to regenerate insulin producing cells in type 1 diabetes but that the slow growth rate of beta cells and ongoing autoimmunity prevents the body from reversing diabetes. It has been recently shown in a publication that the combination of a beta growth factor called exendin-4 and LSF given by subcutaneous minipump can fully reverse established type 1 diabetes in the nod mouse model. Most animals have remained with normal blood sugar for up to 5 months after the removal of the medications. The exciting results recently presented at the ADA 2006 Scientific Sessions shows evidence of new beta cell regeneration in these treated mice.
LSF has been shown to be safe in human trials when given by the intravenous route but this is not a very practical way of using this medication for the majority of people with type 1 diabetes. The current funds will allow the reformulation and safety testing of LSF for subcutaneous delivery. It is anticipated that a clinical trial to test the safety and effectiveness of subcutaneous delivered LSF for treatment of type 1 diabetes will be initiated within a year.
LSF alone or in combination with a beta cell growth factor could offer a safe and effective way to help the body regenerate its own insulin producing cells resulting in reversal of type 1 diabetes.
When I read things like this, it just gives me the hope I need to keep moving forward. As a mom, I need that hope. I need that push to look forward to Riley's future with a smile on my face. Because, in that future, I see a cure. I don't think it's really soon in the future, but it's there. And, I want to do whatever I can to make that cure possible.
So, I've been working diligently on my Lee Iacocca walk. I've gotten the walk listed on the JoinLeeNow website. I've gotten a few donations and a few team members. I've sent out letters to local businesses. I hope I hear back from some of them soon.
I was feeling kind of down the first few days after I started planning the walk. I had to look up some diabetes statistics that just didn't sit too well with me. But, now I know that Riley is not going to be a statistic. He's going to be a young man who doesn't have to count carbs or test his sugar.
Some out there don't believe there will ever be a cure. Just remember that it wasn't that long ago that the phrase "I used to have cancer" was not heard very often. But, now, thanks to research it's heard more often than not among those who have been touched by cancer.
So, I'm just going to look forward to when Riley and others like him can say, "I used to have diabetes".
Those will be the sweetest words I've ever heard.
This story got my attention more than others:
Dr. Jerry Nadler – $370,000
University of Virginia, Diabetes and Hormone Center of Excellence Charlottesville, VA
Clinical trial in type 1 diabetes
Lisofylline (LSF) is a novel small molecule immunomodulator that has been shown to be effective in halting autoimmune damage to pancreatic insulin producing beta cells in experimental models of type 1 diabetes. LSF does not impair the normal immune system but reduces the activity of a key cytokine called Interleukin-12 which plays a major role in leading to type 1 diabetes.
Recent evidence suggests that the body is attempting to regenerate insulin producing cells in type 1 diabetes but that the slow growth rate of beta cells and ongoing autoimmunity prevents the body from reversing diabetes. It has been recently shown in a publication that the combination of a beta growth factor called exendin-4 and LSF given by subcutaneous minipump can fully reverse established type 1 diabetes in the nod mouse model. Most animals have remained with normal blood sugar for up to 5 months after the removal of the medications. The exciting results recently presented at the ADA 2006 Scientific Sessions shows evidence of new beta cell regeneration in these treated mice.
LSF has been shown to be safe in human trials when given by the intravenous route but this is not a very practical way of using this medication for the majority of people with type 1 diabetes. The current funds will allow the reformulation and safety testing of LSF for subcutaneous delivery. It is anticipated that a clinical trial to test the safety and effectiveness of subcutaneous delivered LSF for treatment of type 1 diabetes will be initiated within a year.
LSF alone or in combination with a beta cell growth factor could offer a safe and effective way to help the body regenerate its own insulin producing cells resulting in reversal of type 1 diabetes.
When I read things like this, it just gives me the hope I need to keep moving forward. As a mom, I need that hope. I need that push to look forward to Riley's future with a smile on my face. Because, in that future, I see a cure. I don't think it's really soon in the future, but it's there. And, I want to do whatever I can to make that cure possible.
So, I've been working diligently on my Lee Iacocca walk. I've gotten the walk listed on the JoinLeeNow website. I've gotten a few donations and a few team members. I've sent out letters to local businesses. I hope I hear back from some of them soon.
I was feeling kind of down the first few days after I started planning the walk. I had to look up some diabetes statistics that just didn't sit too well with me. But, now I know that Riley is not going to be a statistic. He's going to be a young man who doesn't have to count carbs or test his sugar.
Some out there don't believe there will ever be a cure. Just remember that it wasn't that long ago that the phrase "I used to have cancer" was not heard very often. But, now, thanks to research it's heard more often than not among those who have been touched by cancer.
So, I'm just going to look forward to when Riley and others like him can say, "I used to have diabetes".
Those will be the sweetest words I've ever heard.
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