Wednesday, November 29, 2006
He started having a stuffy nose last night. His sugars have crept up accordingly. He ran in the low to mid 200s all night last night even after corrections. The lowest he got was 168 at 4:30 this morning, only to wake at 198. I started a temp. basal increase of 60% and he did better for a while, staying in the 160-190 range. But, tonight, he's up in the 300s.
He's now at an increased basal of 80%. His pump was set at a max dose of 12 units per day. (He's never got more than that.). Just now, when I tried to give his correction bolus (for a sugar of 322) the pump wouldn't let me because I was exceeding his max daily dose. I had to go back in and increase his max daily dose so I could give him a bolus.
I feel like I'm pumping in water instead of insulin, for what good it's doing.
I really, really hate this disease. I mean, he just has the sniffles, for goodness sake. He doesn't even have a temperature.
Oh yeah, he also has moderate ketones. I'm forcing the fluids and keeping a close check on things. If this last temp basal and correction don't help, I'll be calling the endo. for some advice.
Monday, November 27, 2006
I said in my earlier post that there was a dinosaur in my house on October 31st, but I meant there was a dragon.
A very cute one, too!!!!
For Halloween, we went to our church for a Trunk or Treat event (kids go from car to car and people give out candy/goodies) There, Riley was able to participate in some games.
Holden even joined in the fun. He and Riley competed in a race to see which team could dress in women's clothing the quickest.
And, here he is back at home with his candy stash (and a Frankenstien Spongebob)
It's really amazing what a difference a year makes. I remember being so sad last year at Halloween. Riley was diagnosed just a few weeks earlier and a holiday that seemed to be all about candy was a little more than I could handle. Last year there was quite a few tears, but this year, not a one.
A lot of the people at church gave Riley sugar free candy or didn't give him candy at all, but a little toy. I thought it was very nice and thoughtful. (Even though sugar free candy doesn't have much less carbs than the regular stuff.) Still, it was nice of them to think of Riley
In other news....
shhhh, come closer. I don't want to say it too loudly.
Are you ready?
Riley's sugars have been absolutely awesome for a good 3-4 days now.
(Lots of quiet celebrating going on here. I don't want diabetes to know I've noticed or else it will wreak havoc to make it's presence known.)
Thursday, November 23, 2006
the act of giving thanks; grateful acknowledgment of benefits or favors, esp. to God.
an expression of thanks, esp. to God.
a public celebration in acknowledgment of divine favor or kindness.
a day set apart for giving thanks to God.
Riley says his prayers every night before going to sleep. Most of the time, he says the uniform prayer: " Now I lay me down to sleep. I pray the Lord my soul to keep." And, every night I ask him if he has any extra prayers. Sometimes he does and sometimes he doesn't.
I love the nights when he decides to say an extra prayer. I think when most people pray, they are usually asking for something. They may throw a few thank yous in there, but for the most part, we're asking God to do things. They are usually good things like "protect my family" or "be with so-and-so, who is in the hospital". But, still we're asking for things. I guess I can only speak for myself here, but I'm not nearly thankful enough in my prayers (or my daily life for that matter)
When Riley says his extra prayer, it's all about giving thanks. Here's a sample: " Dear God, Thank you for my mom and dad and Holden. Thank you for the trees. Thank you for grocery stores so we can have food to eat. Thank you for dogs. Thank you for policemen to protect us. Thank you for cars, so we don't have to walk everywhere. Amen."
See, he didn't ask for a single thing. Why can't I be like that?
I was thinking I would write a post today and try to be like Riley's prayers. I thought "He's so thankful for the little things." Then, I sat down to write and I started thinking. I was thinking of all the "little things" for which I'm thankful. Then, I realized they aren't really little things at all.
Just look at Riley's prayer. The trees, they give us air to breathe and they are beautiful, especially this time of year with all the yellow, orange, and red on the leaves. The grocery store, while I absolutelyy detest going there, I should be thankful that they exist. I take for granted that I can just walk in, buy what I want and leave. So many people all over the world don't have that luxury Dogs, well, how can you not be thankful for dogs? They are "man's best friend". They are among the most loving and faithful things on the planet. And, besides, they're cute. Policemen, well, that's obvious. These men and women put their lives on the line to keep us safe. And, they don't even know us. And, last but not least, cars. I am very thankful for my Pontiac Vibe. I would hate to have to walk everywhere. I live in a very rural area where everything is pretty spread out. But, I see people walking down the road everyday, looking for a ride.
I want my life to be more like Riley's prayers. I want to look at the world and see all the things for which to be thankful. Instead of stressing over what I don't have. I want to be thankful for what I do have.
I found this poem that says it better than I can.
If you find yourself stuck in traffic; Don't despair. There are people in this world for whom driving is an unheard of privilege.
Should you have a bad day at work; Think of the man who has been out of work for years
Should you despair over a relationship gone bad; Think of the person who has never known what it's like to love and be loved in return
Should you grieve the passing of another weekend; Think of the woman in dire straits, working twelve hours a day, seven days a week to feed her children
Should your car break down, leaving you miles away from assistance; Think of the paraplegic who would love the opportunity to take that walk.
Should you notice a new gray hair in the mirror; Think of the cancer patient in chemo who wishes she had hair to examine.
Should you find yourself at a loss and pondering what is life all about, asking what is my purpose? Be thankful. There are those who didn't live long enough to get the opportunity.
Should you find yourself the victim of other people's bitterness,ignorance, smallness or insecurities; Remember, things could be worse. You could be one of them
Happy Thanksgiving to all of you. I hope your day is great and your thankfulness extends beyond today and spills into your everyday life.
Tuesday, November 21, 2006
So, I thought I'd relate some of the things in pictures. Here's some of the non-D things that have been going on over the last couple of months.
Michael was on a church league softball team. I was on it last year too, but was unable to play this year because of my wrist:-(
His team went on to win the whole tournament. They lost their very first game to put them into the losers bracket. Then, they had to fight their way back. The last day, a Saturday, they played four back to back game. They had to beat the undefeated team twice, but they did it.
Did I mention it was cold as begeesus that night?
We took time out right before Walk of Hope to attend the local county fair.
As soon as Michael's softball season ended, soccer practice started.
Then on to soccer games....
They didn't really keep score at the games, but Riley's team had an undefeated season. The very last game I asked Riley if he was going to score a goal for me. (He hadn't scored all year.) He said "I don't know if I can, but I'll try." Then, I told him he needed a good luck kiss. I kissed him and off he ran to play. About a minute later, he scored!! He was so excited (and so was I). Later, when he was relating the story to someone else he pointed to me and said "It was all because of mommy's kiss."
The day after Riley's last game, Holden started basketball practice. I don't have any pictures yet, but I'm sure you'll be seeing some later. Games started Tuesday.
There was more to this post, but blogger won't let me post anymore pictures at the moment. When I am able to, I will share with you the ferocious dinosaur walking around in my house on October 31st.
Sunday, November 19, 2006
I must tell you the story of how I started this blog in the first place and how I came to know about The Diabetes OC.
Early on in this disease, I spent a lot and I do mean A LOT of time on the chat room at Children With Diabetes. It was very helpful to chat with others going through the same thing.
One day in the chatroom Ellen linked to a blog post, this one. I, of course, thought it was great. It made me cry, as did most things back then.
I had heard the term "blog" before, but I didn't really know what one was nor had I ever thought about starting one. The next day I was on the internet Googling all sorts of things about diabetes. One time I typed in "my son has diabetes" and really didn't find any useful results. I didn't find what I was searching for, which was someone who was going through the same thing that I was.
Next, I searched "how to start a blog". I was directed to blogger.com and the rest is history. I started my blog that day. (Here's my first post.) I didn't really know what I was going to write, but I knew why I wanted to write. I started writing this blog to help other parents going through the same thing. That just seems silly to me now. I was so new to this disease, six weeks in, when I started this blog. I was still an emotional wreck and no help to anyone, not even myself.
Oh well, I had good intentions. But, as I started writing, even though no one was really reading it, it helped me immensely. It just helped to get it all out. I eventually stopped writing like I was out to help and just started expressing how I felt. And, how I felt then was not pretty nor was it uplifting, but it was real.
A little while after starting my blog, I was on the CWD chatroom again. I had met a nice lady named Vivian. We had chatted before and this time, for some reason, I mentioned that I had a blog. That's when Vivian told me that she had a blog and asked if I'd ever heard of The OC. I told her all I knew about The OC was that it was a TV show. That's when she shared the D-OC with me. I left the chatroom and sent an email right then. Within a few days, I was the newest member.
And, because of that (thanks, Vivian), I have met some very amazing people. You all have helped me immensely over the last year and for that I am very thankful.
So, that was my journey to the land of blogs.
Oh yeah, and one more thing. Today is also my birthday. 33 years and counting...
Thursday, November 16, 2006
Hmm...where to start?
#1) I am not a very social person. I am not antisocial, but I really don't like being around other people for too long. I like other people (most of the time), but really do not feel any need to bond with any of them. I am a member of a missions group at church. Occasionally, they get together and go away for the weekend, just for fun. I never go. Same thing when the girls from work get together to go shopping on the weekend. I'd rather stay home. I have no need for close friendships. While I like these people, I just do not want to be around them for hours at a time. Man, that sounds horrible, doesn't it? I'm not a bad person. Really. I'd do just about anything to help someone out. Just don't ask me to go shopping or attend a party with you. That is just not my cup of tea.
#2) I like to put molasses on rice. I don't do it all the time. But, sometimes I do. Butter, molasses and rice. Mmm,mmm,mmm.
#3) I am a car slob. My car is always messy. It is usually littered with discarded cups and papers. There are toys in there, jackets, various odds and ends. I do clean it out occasionally. And, I love it when it's clean, but it's not long before it's completely trashed again. Sometimes when I park it somewhere I wonder what people think if they look inside. They probably think that I'm a total slob and that my house is a disaster too. But, that's not the case. I just can't seem to keep my car clean.
#4) People/bands that I have seen live:
The Monkees, Gary Puckett, and Herman's Hermits (no, I wasn't born in the 50's). When I was in junior high, The Monkees TV show started airing again. My best friend and I loved them. (Hey, I was 12). They had a reunion tour that year and we went to see them. Needless to say, much screaming ensued.
Aerosmith (5 times) Once, I was 6 feet from Steven Tyler. Needless to say, much screaming ensued...even though I was 29 or 30 at the time.
Garth Brooks, I am not a fan of country music, but I went through a Garth Brooks stage in my early 20s. He really is a good entertainer.
Collective Soul, Monster Magnet, Saliva, KISS, Kid Rock, Van Sant, The Katies, Newsboys, Grits, and Kutless.
#5) When I was in 2nd grade, I slammed my finger in my mom's car door. We had just arrived home and Rusty, our dog, was trying to jump into the car. So I slammed the door shut really quickly and didn't pull my hand away fast enough. I ran up to my mom with blood dripping down my hand and showed her my nearly severed finger. When she washed it off in the sink, she realized that it was only attached by a very thin piece of skin. I went off to the Dr. and then the ER. That was back in the day before they had specialists for anything. A regular old family physician sewed my finger back on. It was the middle finger on my right hand. It still has two scars on it and my fingernail doesn't grow on that finger anymore. I have a fingernail. It just never grows. I never have to cut it. Also, the Dr. said my bone was crushed at the end of my finger, so I have no bone there anymore. (Other bones I have broken: When I was 18, I broke my left hand playing basketball in high school. My cast was not due to come off yet for a couple of weeks when I walked into the Dr's office and demanded that he remove it. We had made the states and I was not going to miss out on playing basketball in the state tournament. He removed it. I taped up my hand and played. We won the first game, but lost out in the second round. I also broke the ring finger on my right hand once. I was outside and the dog, Lizzy (who I still have) took off to run away and I tried to catch her by her collar. When I did my finger got hung in her collar and was broken. One more... I had a piece of bone cut out of my left wrist during my surgery this summer.)
There. I hope that wasn't too boring for you. I'm not going to tag anyone, because I think just about everyone has already done this. But, if you haven't and you'd like to, consider yourself tagged.
Saturday, November 11, 2006
So, I decided I would interview Riley. There are some "getting to know you" questions and also some questions about diabetes.
#1) What is your favorite movie?
"Garfield: A Tale of Two Kitties"
#2) Favorite TV show?
"Tom and Jerry"
#3) Favorite food?
#4) Favorite song?
"Get Back, Get Back (You Don't Know Me Like That)
#5) What did you do yesterday?
"played Fusion Frenzy and watched Spongebob"
#6) What is your favorite thing about Mommy?
"He loves me."
#7) What is your favorite sport?
" David Ortiz"
#8) Is it hard having diabetes?
"Cause you have to give you insulin and check your sugars."
#9) Is there anything good about having diabetes?
"Yes. You change your needles, cause that's what you're supposed to do."
#10) What is the worst thing about having D?
#11) Can you eat anything you want?
"No. I can't eat poptarts and sugar."
#12) How do feel when you're sugar is low?
Does it hurt?
"Well, my tummy does."
#13) Does it hurt to check your sugar?
#14) Do you like wearing a pump?
"Yes. Cause you don't have to take two shots."
#15) Do you think there will ever be a cure?
#16) What will you do if there is a cure?
" When they send it to us I'm going to eat and drink whatever I want."
#17) What would you say to another little boy or girl who just got diabetes?
"I'm sorry you have diabetes."
That's my boy.
Friday, November 10, 2006
And, thank you to those of you who have put the diabetes ribbons up on your blogs. I smile every time I see one.
Thanks also for your responses to A Mother's Perspective. They helped me more than you could know. It really helped to just get it all out and know that you would understand or at least try to.
I love you guys!!!!!!
Thursday, November 09, 2006
When I first got up this morning, I wasn’t planning on writing anything. My last post still has me a little spent. Bringing all those bad thought to the forefront where I had to examine them was not a pleasant experience. I’m still a little down from it all.
But, as I was sitting on the couch this morning drinking my coffee, I started to think about that last post. It was a little gloomy, but it was honest. It was very hard for me to bare my sole like that.
Then, I got to thinking. What if someone new to this disease read that post? What would they get from it? That being the parent of a diabetic child is always heartbreaking? That’s not what I want to convey.
I’m somewhat new to this myself, in comparison to the other parents out there in the blogasphere. I’ve had diabetes in my house for 13 months now. And this November is nothing like the last.
I don’t like being negative. Not when there are so many positives in my life. I don’t want other parents who’ve been living this for a few weeks or a few months to think that they are saddled with a life a gloom and doom.
That is not the case at all.
Those first few months were just terrible. It just felt like a never-ending battle. A battle that I was sure I was destined to lose, a battle for which I felt so ill equipped.
But, as the weeks and months went on, each day was a little better than the last. The breakdowns didn’t come as often. But, to be honest, they still come occasionally. I would be lying if I said they didn’t.
I kind of picture it as a roller coaster ride. In the beginning there where a lot of ups and downs, more downs than ups. But, as time went on, I spent more time on an even keel. Those even places tend to have more curves in them. But, you learn to brace yourself, lean in, and go with it. The dips don’t last as long either.
What I’m trying to say (and doing a poor job of it, I think) is that it does get better. I joined the OC, sometime in November or December of last year, I think. And, at that time, I kept hearing, “It will get better”. And I kept thinking, “When?”
No one can tell you when that moment will come, but it will. That moment when you don’t feel like this disease is beating you up all the time, the one where you feel like you’re living your life again.
My life is full of wonderful things. I am so blessed beyond measure. I have a wonderful, loving, understanding husband. He is my best friend. I can tell him anything, and, even if he doesn’t understand, he loves me anyway.
I was blessed at a young age with a wonderful son. He and I grew up together. He taught me what true love is. Some people never know. I learned in a hospital room at the tender age of 17. I am so proud of the young man he has become. And, I look forward to see him grow into an adult. I’m excited to see what waits around the bend for him.
Eleven years after Holden, Riley came along. I worried before he was born how I would ever love him like I did Holden. I was worried that there wouldn’t be enough love to go around. But, the moment he was born, my heart grew a little and there was plenty of room for all that love.
I look forward to seeing what Riley will become too. I know it will be something great, because he is a great kid.
I’m crying again now. But, this time it’s not tears of sadness. It’s tears from having realized that my life is blessed and full of love. And, all that love I have, no one can take it away. Not even diabetes.
Tuesday, November 07, 2006
I wish I did.
You don’t know how badly I wish I did. If I could take all those highs and lows, if I could take this disease from Riley and keep it as my own, I would. I wouldn’t think twice about it.
But, I can’t. You don’t know the nights I’ve spent praying, “Please God, just take it away from him and give it to me.” It just doesn’t work that way.
I’ve asked others to write about what living with diabetes means to them. I can’t do that, but I can tell you what it’s like to live as the mother of a child with diabetes.
First, I want to state that I am not writing this trying to get sympathy. I am not the one with a chronic disease. I’m just the one handling this disease until Riley can handle it on his own.
This post is hard for me to write. To write this post, I will have to ponder the bad things. The things I try to keep tucked in the back of my mind, the things that somehow find their way into the forefront sometimes. The things I try to keep locked in the box.
When Michael and I got married, we were not planning on having anymore children. We already had Holden, who Michael later adopted. I never planned on having more children and Michael was fine with that.
But, a year and half into our marriage, I was late one month. I'm never late. We just knew I was pregnant. It was not planned. I took a pregnancy test. It was negative.
We were both a little disappointed. Turns out, once faced with the possibility of having another child, it sounded great. A couple of weeks later, we decided to try to have a baby. Two weeks later, I was pregnant with Riley.
I shared that story with you because diabetes has taken one of the happiest moments in my life and tainted it. When I think back to the beginning when I was first pregnant, I can't help but feel a little sad for what was to come.
Don't get me wrong, I wouldn't change it. Knowing what I know now, I would still do it all again. Riley and Holden are the best things that have ever happened to me. But, when I think back to Riley's birth, I can't help but think, "We had no idea what was coming down the road."
My desk at work is covered with pictures. Many of them are pictures of Riley before diabetes entered his life. Every once in a while, I catch myself staring at them and thinking, "We were so happy and carefree then." Sometimes a tear will slip out because my heart aches to have back the Riley that didn't have diabetes. Not that I don't love the Riley with diabetes, I just wish he didn't have to deal with this disease.
You see, I'm basically a happy person. But, diabetes sneaks a jab in almost on a daily basis. Sometimes I'll just be sitting on the couch and Riley will run through the living room and the thought will cross my mind that he has diabetes. A sadness overcomes me.
Almost everything is bitter sweet, vacations, soccer games, Christmas, all tempered by diabetes. Every single thing in our lives has diabetes hanging over it. I have to look through the diabetes fog just to see what's going on.
The best thing about this disease right now is that it doesn't consume Riley like it does me. He doesn't have to count carbs or try to figure out how much insulin to give. He doesn't wake up several times a night to test sugars. I do all of that for him. I'm happy to do it.
That way he doesn't have to worry. He feels the lows and the highs, but he doesn't have to worry about what to do about them. He picks out what he wants to eat without worrying what it will do to his sugar. That's my job. Worrying, watching, praying, hoping.
But, the pain comes from knowing that one day, all of this is going to be his to bear on his own. If I could handle it all for him forever, I would. But, that's not very practical.
So, I've begun teaching him a little here and there. He can tell you what to do if his sugar is low or high. He can test his own sugar and read you the number. He hasn't quite figured out what's low and high yet, but that will come.
Teaching him to care for himself is a necessary evil. It's painful to watch him struggle to get the strip in the machine. It's painful to watch him poke his own finger. Even though he says it doesn't hurt, he still scrunches his face up everytime he sticks his finger, just bracing himself for the prick of the needle.
I don't worry about future complications all that much. They cross my mind occasionally, particularly blindness and kidney failure. But, if they come, it will be farther down the road. I have too much of the here and now to worry about.
I worry on a daily basis that something bad will happen to Riley. There is always that possibility of a low. It's always lurking. If Riley feels the low, he will often say "My head feels funny." Several times a day I find myself asking, "How's your head feel?"
I worry about Dead in Bed syndrome. I can't help it. I read a post by someone else (I don't remember who right now) that said their mother called them every morning to make sure they had woken up. This person didn't understand. Dead in bed syndrome is not all that common, they said. But, I understand. It's there. It happens.
Michael and I take turns getting up to check Riley's sugars during the night. Depending on how his sugars are, we will test anywhere from 2-4 times a night. It's usually only 2 times though.
But, when it's my turn, I walk in and turn on the light. As I'm turning on the light, I stop breathing for just a moment. The first thing I do as soon as the light clicks on is to look for the rising and falling of Riley's little chest. This means he's breathing. It means he's alive. I do this every. single. time.
I'm terrified of finding him dead. I just can't help myself. I really do brace myself for it everytime I get up to check his sugar. I've never told anyone that before. Michael doesn't even know. It's just a terrible fear that I have. One that won't go away.
I worry about him going into DKA. Even though I keep a close check on his sugars, it doesn't mean it can't happen. A little bug that would keep most people down for a day or two, could kill my child. Riley getting the flu is one of my worst nightmares. Even though he has had the flu shot (as have all the rest of my family), he could still get the flu or a terrible virus.
Both would wreak havoc on his sugars and could make them uncontrollable. Several months ago I got an email from another mother who had just learned of someone whose 8 year old grandson had died from diabetes. He had gotten sick and gone into DKA. As a result, his brain had swelled and he had died. 8 years old.
You can just never feel like you're in control with this disease. I try to fool myself sometimes into thinking I can handle anything that diabetes throws at me. But, I can't. I can't handle losing my child.
I can't imagine living my life without him.
But, on a daily basis, it crosses my mind that one day, I may have to.
Vivian and Sarah have both written excellent posts. Please go and read them.
Also, I have something else I'd like you to take a look at it. I found it at Scott's blog, who got it from Martha O'Connor's.
It is heart-wrenching. If you are a person with diabetes that doesn't believe in a cure and that isn't doing anything to help find a cure. Go here and see if it makes you feel differently.
I'm assuming that only adults read this blog. But, this disease mainly strikes children. It steals part of their childhood. It makes them have to be responsible way before their time.
Go and look at these faces. They are our reason to fight.
Sunday, November 05, 2006
Copy. Paste. Post.
Also, I just got through reading Scott's post. He took my words to heart and wrote about what living with diabetes means to him. I think he did a great job.
Go. Read. Cry.
Friday, November 03, 2006
So, where are all the, um, is it gray ribbons? (Are you sensing my sarcasm here.) You see, because I am a nurse, I will often come to work and find a little ribbon or pin on my desk to wear to show awareness of a certain disease or awareness of child or spousal abuse or whatever. In November...nothing.
To be honest, November was almost over last year before I found out it was NDM. Honestly, 9 years of nursing and I'd never even heard of it before. I was still very new to this disease last November. I was still trying to wrap my mind around the fact that my 3 year old has a chronic disease. (Wow, it still hurts just to type that.)
This year, I knew from day 1, but still, nothing had really changed from last year. Last month was National Breast Cancer Month. Pink ribbons were everywhere. (I received a pink ribbon and a pink bracelet for October, by the way.) I saw several pink products in stores (candles, etc.) that if you purchased, a certain percentage of what you paid would go to breast cancer research. You don't know how many times I thought, "Wow, I'd like to know who's in charge of all this". I'd love to talk to them about diabetes.
Don't get my wrong. Breast cancer awareness is very, very important. And, because of this wonderful campaign, I'm sure some women's lives have been saved. I don't want to take anything away from other diseases. But, I want diabetes to have it's day (or month) in the spotlight too.
Is this so wrong of me? The problem is, what do I do about it? I mean, I'm just a mom with a little blog who loves my son (and the others I've met with this disease). I'm not a national corporation with lots of money and lots of pull.
Maybe it's the nurse in me, but I believe education means power. You can't fight a disease if you don't know anything about it. You can't have compassion about it, if you don't know what people with that disease struggle with on a daily basis.
There are a few problems with this, however. For one thing, I think diabetes isn't seen as being so bad. I mean, it doesn't kill you, right? (Sarcasm again there.) That's what most people think. Most people think it's a pain in the butt to deal with and well, the daily shots and finger pricks are just horrible. [If I hear, " I couldn't do that to my child" one more time, I will just scream. Come on people yes you would do that (stick them with needles several times a day) because you have to. If you don't, they would die. Sorry, that's another post, I think.]
Also, I think people that live with this disease on a daily basis, don't want to draw attention to themselves. Not that they are ashamed of what they have, but that they are just living their life, focusing on what they have to do to survive. Not thinking about what might be down the road, focusing on the here and now. Some are focusing on the cure in the future, but will that cure come without educating the general public as to why they should donate to that cure?
Or maybe it's because people think it could be much worse. Riley could, God forbid, have terminal cancer. But, you know what? He also could go into a diabetic coma and die at the age of 4. He could have a seizure from a low and suffer brain damage. He could suffer a hypo in his sleep and never wake up again. While all of that was very painful to type (I'm crying now), it doesn't change the fact that every word I just typed is very, very true.
While I was researching for Walk of Hope, there was one statistic that stuck in my mind and it's one that still haunts my thoughts every once in a while. It came from the JDRF site. I don't remember it word for word, but it was something along the lines of "Most people who live with Type 1 diabetes will have complications from the disease after 20 years." Of course, that sounds bad, just by itself. But, when I put it on a personal level, it hits me right in the gut. Riley was 3 when he was diagnosed. That means that, statistically, by the time he's 23, he'll have some form of complication from this stupid disease. 23. Just finishing college, just really starting to live. That doesn't mean he will, but the odds are not in his favor. Even with a normal A1C, his sugar still runs high after eating. While insulin is great, it is not the real thing and does not work as quickly as we would like. That is why I try not to check Riley's sugar too soon after eating. Those high numbers are just too hard to swallow.
See, these are the things the public needs to know. But, one last problem with that. The general public just doesn't care. We are all so wrapped up in our own lives that other people's problem aren't hardly even a blip on our radar screen. For example, a year and half ago, I wouldn't have been nearly as passionate about it as I am now.
That's why the breast cancer campaign is so great. It was kind of shoved down everyone's throats (in a nice way of course). You have no way to avoid it. It's in the forefront in October. It's in the media. It's even in the grocery store on some of the foods you buy. (ever seen pink M&Ms?)
That's what I want for diabetes. If I have to shove it down people's throats, I don't care. I'll be sure that they don't choke on it, of course, but, by goodness, they need to know what millions of people live with on a daily basis. People need to know why they should do something to help them.
Like I said before, I'm just a little ol' mom with a little 'ol blog. But, I'm going to do what I can. I am going to post a picture of the diabetes ribbon and encourage you to do the same on your blog. I'm not sure if you'll be able to copy it off of my blog. If not, you can go here and get it like I did.
But, don't just copy it and place it there just so people can look at it. I encourage each and every one of you, in honor of this month, to write a personal post about what diabetes is to you. Why it is so important for the public to get involved with fighting this disease too.
It has to start with us. We have to care enough about ourselves or our children to want to make people listen to us. Make them understand why this is so important.
So, post the ribbon. Also, ask others to post it on their blogs. Let's spread this outside of the OC. I know other people read some of your blogs that don't have D and they have blogs of their own. If you are reading this blog for some reason and you have a blog of your own, even if you have nothing to do with diabetes, please post it on your blog and at least mention that it's National Diabetes Month. If someone would like to make a donation in honor of National Diabetes Month then here are a few links: The Iacocca Foundation and JDRF are for Type 1 D and The ADA cover both Type 1 and Type 2.
Thank you in advance for doing this.
One of my favorite songs of the moment is "Waiting on the World to Change" by John Mayer. Every time I hear it, I think of diabetes.
Waiting on the World to Change by John Mayer
me and all my friends, we're all misunderstood
they say we stand for nothing, and there's no way we ever could
now we see everything that's going wrong with the world and those who lead it
we just feel like we don't have the means to rise above and beat it
so we keep waiting, waiting on the world to change
we keep on waiting, waiting on the world to change
it's hard to beat the system when we're standing at a distance,
so we keep waiting, waiting on the world to change
now, if we had the power to bring our neighbors home from war
they would have never missed a Christmas, no more ribbons on their door
and when you trust your television, what you get is what you got
cause when they own the information, oh, they can bend it all they want
that's why we're waiting, waiting on the world to change
we keep on waiting, waiting on the world to change
it's not that we don't care, we just know that the fight ain't fair
so we keep on waiting, waiting on the world to change
one day our generation is gonna' rule the population
so we keep on waiting, waiting on the world to change
I, for one, am sick of waiting. Are you?
(**side note: blogger is once again being very uncool this morning and not letting me post my ribbon.. the ribbon will be forthcoming. Until then, use my link and try to post it on your blog. Maybe you'll have more luck than me. Blogger just doesn't like me. I'm trying not to take it personally.)
Thursday, November 02, 2006
"Three or four times per day is usually recommended for those who take insulin."
Of course, it does go on to say you or your child may need to test more often, blah, blah, blah. But, my position is that they need to set guidelines for those with Type 1 that are realistic. Testing 3-4 times per day is not very realistic to achieve the recommended A1C of 7.0.
Nicole, who is so much more articulate than me, has sent an email to someone at the ADA posing some questions about their guidelines. I really appreciate her doing this. And, I will keep all of you posted on what is going on.
Wednesday, November 01, 2006
So, here's my problems with this. # 1) The American Diabetes Association recommends testing 3-4 times a day. There is something very wrong with this. The minimum should be 8 times a day. (before meals, 2 hours after meals, at bedtime, and in the middle of the night) The ADA needs to be more of an advocate for people with Type 1. If insurance companies are looking to the ADA for guidance then their guidance should be better and not quite so vague. #2) I have a problem with the ADA, FDA, and insurance companies not differentiating between Type 1 and people on insulin. I have plenty of Type 2 patients that are on insulin. There is a huge difference between the two. While some people with Type 2 benefit greatly from insulin, they do not need it to survive. My son needs insulin just to live. He has an organ that does not function. In order to try to be that organ for him, I have to test him more often.
So, does any of this bother anyone else? I am continuing the battle with my insurance company by filing a grievance. But, would anyone care to help me educate the ADA on why they need to take Type 1 a little more seriously?
Please let me know what you all think. I feel that the main organization that is looked to,to educate the public about diabetes is falling down on the job. I think we need to let them know this.