Some going ons...

With all that's been going on lately (Walk of Hope, Riley's one year anniversary, etc.) there are things I didn't post about.

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.

Happy blogaversary to me...

I started this blog one year ago today. It really doesn't seem like it's been that long. A lot has changed since then, my knowledge, my emotions, my mental state.

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...

Tag-a-riffic

I realized several days ago that I had been tagged by Shannon. But, I am just now getting around to revealing 5 not very well-known things about myself.

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.

A Four Year Old's Perspective

First, Daniel wrote a short post about diabetes. I thought it was great. Then Scott commented that he couldn't wait until Riley could do a post. Since he's only 4, that would be awhile.

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?
"Dinosaur oatmeal"

#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?
"Her hugs"
Daddy?
"Kisses"
Holden?
"He loves me."

#7) What is your favorite sport?
"baseball"
Favorite team?
"Marlins"
Favorite player?
" David Ortiz"

#8) Is it hard having diabetes?
"Yes"
Why?
"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?
"giving shots"

#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?
"bad"
Does it hurt?
"Well, my tummy does."

#13) Does it hurt to check your sugar?
"No"

#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?
"Yes"

#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.

Some thanks

I just want to say I've enjoyed reading each and every post on D-blog day. You guys are great. I'm glad I found you. Thanks for sharing your lives with me.

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!!!!!!

My D-blog Post

It’s D-blog day.

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.

A Mother's Perspective

I can’t post about what it feels like to live with diabetes. I don’t know what a high of 400 or a low of 40 feels like. I don’t know what it feels like to prick your finger upwards of 10 times a day. I don't know what it's like to give yourself an injection just to have a little snack. I just don’t know.

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.

Another post to look at...

Also take a look at this post from Bernard. He makes some good points and has a challenge for you.

Linkity, link, link

I have read a few posts by people who tell what living with diabetes mean to them. If you have written a post about this, please let me know. I would love to read it.

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.

The ribbon

Here is the diabetes ribbon that I promised. (Now if I can only figure out how to put it in my sidebar.)

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.

National Diabetes Month

As a health care professional and a mother of a child with diabetes, I would be remiss if I didn't mention that this is National Diabetes Month. Yep, that's right, every year in November.

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.)

More on the ADA

Just a very quick post to give you all a link to where the ADA recommends testing 3-4 times a day. It is stated at several different locations, but this is one of them. (If you don't know what I'm talking about, see my previous post.)

"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.

Insurance update

Just a very quick update on the latest from the insurance company. Yesterday I received a call back from the pharmacist at the insurance company. She says the info for limiting the strips came from the ADA. They recommend that Type 1 people test 3-4 times a day. ( They also say people with Type 1 should test "several times a day". Is that vague enough for you?) Also, they use Medicare guidelines (for my 4 year old) which recommend people on insulin use 100 strips per month. She said they allowed more than what was recommended because they realize there are days where you need to test more than others.

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.

What really counts

Because of the walk and all that went along with that, I never even mentioned Riley's last endo. appointment. It was about a month ago. All in all, things went pretty well.

He had gained 2 pounds since his last appointment, which was a little bit of a relief. At his last appointment he had lost 1/2 pound, which is not normal for a kid his age. Now, we're back on track. I feel like he may have gained more weight since then because he really has had a great appetite lately.

I will post more about the particulars of the appointment later, but for now, I want to share something I saw while at Dr. M's office.

We were sitting on the couch waiting to be seen and I noticed a little sign hanging on the wall. I had never noticed it before.

It said:

" Not everything that counts can be counted.
Not everything that can be counted counts."

I really like that. It helped to bring into perspective that Riley's life is not just about the numbers. It's about living life. The numbers are important. Like keeping a normal- for- age A1C, but it you start to focus on the numbers you may loose site of the big picture, life

It's a hard thing to do. Instill in your child that the numbers (sugars) are very, very important, but not too much. (See, that whole sentence doesn't even make since.)

A year ago, I would sit on the couch for an hour just staring at Riley's log book. I would agonize over the high sugars and try to figure out what I did wrong.

Now, I realize that sometimes it is something I've done wrong (like miscount the carbs), but most of the times it just is what it is. Unless I've started to notice a pattern at certain times of the day, I hardly ever sit and study his log book anymore.

In the last year I have learned not to make a big deal about the numbers. You treat the lows, you correct the highs, and you adjust basals when a pattern emerges.

Other than that I try not to think about the numbers much. I know that Riley looks to me to learn what's important and what's not. The best way to teach a child is through action.

So, that is why when his sugar is in the 300s, I just correct and test him again in about and hour and half to make sure it's coming down. I try very hard not to comment or appear disgusted. These things happen. As long as they don't happen too often, it's all good.

Riley is a wonderful little boy. He is so smart and so sweet. I had someone comment just yesterday how polite he is.

He loves baseball. It is amazing how much he knows about it. When the world series is on, he's glued to the TV. (Go Tigers!!) When he's not watching baseball. He's pretending to play it in the middle of the living room.

He is so much like his dad, it's not even funny. He loves his big brother fiercely. He would do anything for him.

He's a healthy, happy, wonderful little man. And at the end of the day, that's what really counts.

Walk Pictures

Blogger finally decided to be nice to me. Here are the pictures I promised.

My little man, my inspiration, my hero.

Walk of Hope 2006

Walk of Hope 2006

Walk of Hope was held on October 7th, in commemoration of Riley's one year anniversary with D. A few months after he was diagnosed I thought I would just let that time pass with sadness. While I was sad, especially in the days leading up to his anniversary, I decided to do something positive in honor of Riley.

It was held at a local school. I asked to use their football field, but had access to the gym, just in case. The forecast for that Saturday was rain, rain, rain. But, the rain held off. It had rained a lot the day before and the football field was sloshy, so we moved the walk into the gym.

There were not many people that actually came out and walked. It started out with me, Michael, Holden, Riley, my mom, and Holden's girlfriend. Then, a little later my dad showed up. I had a sign up sheet and we took turns walking around the gym in 15 minute increments.

Around 10:00 my preacher and his family arrived. That's when we did the little presentations that I had done. The first presentation was about 5 minutes long and featured facts about Type 1 diabetes. We have Windows Movie Maker on our computer and that is how I made it. Michael borrowed a projector from his school and we showed the presentation on the wall. The background music was "He's My Son" by Mark Schultz. (you can go here to read the words to this song, but beware, it's a tear-jerker.)

Next, I did my little presentation of "Faces of Hope". I ended up with 13 people participating. I wish I could somehow show it to you. It's saved on my computer. If anyone knows how I could email it to people, let me know. I'm really not very computer literate.

The "Faces of Hope" presentation was about 4 1/2 minutes long. It featured people with Type 1 from all over the US, one from Switzerland, and one from New Zealand. The background music was "Hero" by Mariah Carey. (You can read the words here.) I did Ok all day until we did the presentation. I stood in the back and cried quietly. Not just for Riley, but for all of the people in the presentation and all of you that weren't.

Then, the walking resumed. My preacher and his family left. Right after they left, a boy in Holden's class, who has D, arrived with his mom and little brother. I showed the presentations again so they could see them.

When the walk was over and all the money was counted, it totaled $2,617.00 ( I have since received more money bringing the grand total to $2,667.00) My goal was $1,000, so I am quite pleased with the end result. I didn't expect to get much money just because I was collecting it all on my own. I had a few people say they would help collect money and then they didn't. Two people, Holden's girlfriend and my preacher's wife, did collect money totaling $60.00. Oh, yeah, and Michael got $27 from people that he works with.

I am not telling you this to brag. I am telling you this to let you know that you can do it too. I look at it this way. I may have not raised a whole lot of money, but if all of us would raise a few thousand here and there just think what we could do.

All of the money raised went to The Iacocca Foundation. Follow the link and you can donate to this worthwhile cause too. The money that was raised at Walk of Hope went directly to The Nathan-Faustman Project. For those who may not know, Dr. Denise Faustman has cured Type 1 in mice and is now conducting human clinical trials at Mass General Hospital in Boston, MA.

Because the money went to this foundation, Riley was featured in their latest e-newsletter. I can't post a link to it, because it emailed to those who sign up for it. If you would like to sign up for the newsletter, go here and click on the contact link. Or you can send me your email address and I'll email the October newsletter to you.

I am already looking forward to next year's walk. I kept it small this year, kind of as a test run. But, I plan on it being bigger and better next year. I am even planning on contacting someone who is somewhat of a celebrity. I figure, what the heck. The worst is that he can think I'm a psycho and tell me no. But, he may not. I won't know unless I try.


I'll leave you with a couple of pictures. If you notice, we all match. I had team shirts made. The front left had "Walk of Hope 2006" on it. On the back it said "Walk of Hope 2006, to raise money for a cure for Type 1 diabetes, all proceeds to The Iacocca Foundation www.joinleenow.org. Then it had The Beacons of Hope. Under that it listed all of the people or businesses that donated $100 or more.
(note: blogger is not being very nice this morning and is not letting me post my pictures. I will post the pictures at a later date, when blogger decides it will let me.)

Insurance battles

An update about the walk will be forthcoming, but first I must rant a bit about Riley's insurance.

My husband is a teacher. We have NC State Teacher's health insurance. When given the opportunity, we switched to a PPO plan. It had what appeared to be better coverage. One of the main reasons for switching was that test strips were covered under a $10 co-pay. Period. The end. No fine print anywhere to be seen.

In the previous plan, I would pay for Riley's strips up front (400 strips= $386.00 per month), then a month or so later the insurance would send me a check for the 80% of the strips that they covered. So, we were paying around $77 a month for strips. When we saw the $10 co-pay, we just couldn't resist. There are other great things about the plan, but the test strips were really our deciding factor. This new plan costs a little bit more per month, but we end up saving money in the end, due to the decreased deductible, etc.

One downfall was that we had to give up our wonderful Freestyle meter. I really like that meter. It's so small and the test strip lights up to make middle of the night testing much easier. Under the new plan, Freestyle is not a preferred strip. So, we got a new prescription from the endo for One Touch Ultra strips. I thought I had jumped through all the hoops I had to. Giving up the Freestyle meter was a small price to pay for the savings we would be receiving. ($804.00 per year).

I walked into my local pharmacy on Thursday and handed them my brand new prescription for a 30 day supply of strips. The endo even wrote on the prescription "Small child on the pump, must test at least 12 times a day" I was feeling good. I was smiling thinking of that mere $10 I had to dish out.

Mr. Nice Pharmacy Man tells me the prescription won't go through. He said it says I need prior authorization. This is the first I've heard of such a thing. So, I call the endo and give her the 800 number I have been given so she can approve the strips. When she calls the number, she is told that my plan does not require prior authorizations for strips. So, the ball is back in my court.

I spent a little while on the phone on Friday trying to get this all straightened out. I didn't spend the whole day, however, because Friday was a special day. I was finishing up with some last minute walk things and it was Riley's one year anniversary. (We did go to the movies and saw Open Season. It was pretty funny. Ashton Kutcher is the deer and I've always thought he's hilarious.) Ok, back to the insurance saga.

By 5:30 Friday, I had gotten no where and the pharmacy closes at 6 PM. I ended up going to the pharmacy and buying 25 test strips just to get me through the weekend. I had a few Freestyles left.

I begun my quest anew on Monday morning. Then, I went to see patients. And started the quest back up on Monday afternoon. In total, I spent 3 hours of my work day on the phone with the insurance company. Everyone I talked to told me that they couldn't authorize more test strips. But, they couldn't tell who could. I was bounced back and forth from the insurance company to the people who handle the pharmacy benefits. Both sides told me they had nothing to do with test strips.

What I did find out is that the new plan would only allow 150 strips per month (or 5 per day). Yes, 5 per day. I used 5 in a little over an hour Saturday because Riley was low and didn't seem to want to come up. I had to keep testing until we got him in range again. 5 strips a day is just totally ridiculous for someone with Type 1 diabetes, especially, a small child. The insurance people did not see my point. They were absolutely no help, whatsoever.

By the end of my work day on Monday, Riley had 5 strips left. While the insurance company thinks that should last me 24 hours, they lasted until 8 AM Tuesday morning. Foreseeing that 5 would not be enough, I go back to the pharmacy. Mr. Nice Pharmacy Man gave me 100 strips on credit until I can get all of this straightened out. (By the way, Mr. Nice Pharmacy Man owns this pharmacy and was very nice to just hand me 100 strips without making me pay. He has always been very helpful and even donated $100 to Walk of Hope).

(Let me interject here, I started this post almost a week ago and am just now getting back to it. So, I'm just going to make a long story short.)

Tuesday I spent another 2 solid hours on the phone. People kept telling me that I could hang up and someone would call me back. I refused to hang up. I just kept telling them that whoever they were going to talk to I wanted to be on the phone at the same time. So, I had several 3 way conversations.

The very first person I called on Tuesday was named Heather. I told Heather all that I had been through and she asked if she could stay on the line with me. She stayed on the other end the entire 2 hours. I thought this was going above and beyond the call of duty. It was nice to have her there because when other people didn't want to listen to me, she would jump in and people would start taking me seriously again. I got her supervisor's name and will be sending an email to Medco today to let them know what a good job she did.

Ok, I said I was going to make this short. I ended up talking to one of the higher ups who gave me her direct phone number. In the end, I found out that the insurance company uses the FDA guidelines which recommend that people test 5 times a day if they are on insulin. Come on. The FDA can't even differentiate between Type 1 and Type 2 diabetes? (I spent a lot of my time on the phone educating people about Type 1 diabetes and why Riley needed to test so much.) So, my plan will allow 150 strips per month under the $10 co-pay. Then, the other 250, I have to pay up front like I did before and then wait to for insurance to send back the 90% they owe me. It is still better that it was and still ends up saving us about $400 a year, but it's not as good as I thought it was going to be.

I just kept thinking while I was on the phone, "How often will Riley battle with people like these over his lifetime, just to get what he needs to survive?"

Another injustice that comes along with this stupid disease.

Today

Today is the day. I posted yesterday because I didn't think I'd be able to post today. But, somehow, today, I'm OK. The emotions from yesterday have passed. I would be lying if I said I wasn't a little sad. But, it's not like yesterday. It's more of a nagging- in- the- back- of -my- mind sad. Just enough emotion to remind me that a year ago today was a very bad day. I had actually gotten better by last night. Michael had a softball game and on the way home from that I was laughing and singing along with the radio. He thought I had lost my mind. I told him. "Leave me alone. I've cried all day. I'm tired of crying."

Today, I'm tired of crying. I'm tired of letting diabetes dictate how I feel. I woke up this morning and one of the first things I thought is, "you have a choice to make". I'm a firm believer that most people are as happy as they let themselves be. Baring any chemical imbalances, we all decide how we are going to react to certain situations and how we are going to let situations or people make us feel.

Today, I cannot change the past, but I can look forward to the future. A future, not with complications, but with new technologies and possibly a cure.

Today, I am thankful for all the blessings that I have in my life. I have a roof over my head, food on the table, 2 beautiful boys, and a loving husband.

Today. my son has had diabetes for one full year.

Today, I'm at peace with that.

Tomorrow

Tomorrow is Riley's one year anniversary of having diabetes. I knew it would be hard, but I had no idea how hard.

I have plans to have a "fun day" with Riley tomorrow: maybe go to the park, go to a movie, go out for ice cream. You get the idea. I want tomorrow to be special. He doesn't know the significance of tomorrow and I'm not going to tell him. I am just going to make tomorrow all about him. After all, a year ago it was all about him ,but kind of in a bad way.

Because of all that I have planned for tomorrow maybe that is why all my emotions are overflowing today. I worked today. I cried in between every patient. I even cried at one patient's house. But, she's 96 and can't see or hear. She has no idea I did it. I just couldn't help myself.

I really feel like Riley has been diagnosed all over again. All the emotions I felt last October 6th have come flooding back like they never left. All the uncertainty, the fear, the sorrow. Just the utter grief that I have because my baby has a disease and I can't do anything about it.

I'm having trouble just putting one foot in front of the other today. Really. At my 96 year old's house, I just sat in the chair for the longest time. I couldn't move. I was just so overcome with emotions. I feel so drained. Not physically, but emotionally.

It's a wired feeling. I don't want to feel this way, but try as I might that horrible feeling in the pit of my stomach won't go away. I'll just be driving along and an image of Riley in the hospital flashes through my mind or the look on the Dr's face when he walked in to tell me that my son's life had changed forever. I'll never forget that look. It was a look of sympathy. I knew before he ever opened his mouth what he was going to say.

I 'm not going to recount the day here. I really don't want to think it about it right now. If anyone would like to read Riley's diagnosis story, you can go to my very first post.

It's really been a while since I had a breakdown because of this disease. I have my "curse diabetes" moments, but I haven't had a sob-fest in a while. I guess I was overdue.

Today, the box has overturned. All the bad things are scattered about on the floor and I just don't have the energy to pick them up and put them back in. Maybe later, but not right now. For now, I'll just sit in the corner and stare at them, wondering how they ever entered our lives in the first place and wondering if they'll ever really leave.

Sitting on the box

Walk of Hope is coming up this Saturday. In my quest to make this disease “real” to people who don’t know much about it, I will be doing a little education also. Because of this, I have been researching statistical information about Type 1. I know the incidence of it, but I also know how many die each year due to Type 1. It’s not put me in such a great place.

I try very hard to not think about what could happen to Riley because of this disease. I try to focus on the good things. He’s healthy. He’s happy. His A1C is in range for his age. But, when I read about the bad things, it’s very hard not to be scared.

Like I said, I’ve been researching statistics. I also received a packet of info in the mail from JDRF about an upcoming walk. In it were sample letters from parents that they had sent to family and friends soliciting donations. These letters shared what they go through on a daily basis. A couple of them recounted recent seizures their children had suffered due to low blood sugars. When Riley was first diagnosed, I worried about seizures a lot. But, as time went on and he had lows in the 30s without a seizure, I kind of just pushed it to the back of my mind. But, now reading about it has made me think about the fact that it could happen to him.

A month or so ago, Michael came home with the news of a sister of one of the students at his high school. She had died from Type 1 diabetes. She was 7 years old. The tears roll down my face as I write that. I can only imagine what the family went through and is going through. It could have been my baby. It could still happen to my baby.

I try to keep these thoughts at bay. Yes, Riley could die from this disease. After all, there is such a thing as dead in bed syndrome. Yes, Riley could have a seizure from a low. Yes, he could end up with kidney failure and blindness. All of these things are a possibility for him.

I feel like I’ve put all those things in a box and I’m sitting on the top of it. The bad things try to pop out every once in a while. It’s really hard sometimes keeping that lid closed. I feel like it is taking all my strength just to keep one of the bad things from coming out. And, every once in a while, I’m not strong enough to keep that lid closed. Sometimes one bad thing will pop out and I’ll quickly stuff it back in and slam the lid shut. Other times the whole box is overturned and it takes me longer to put all the bad things back in.

Eventually I get them back in and instead of sitting on the box to keep it closed, I lock it. I lock it and I keep the key close by. Because, if I learn of another bad thing, I will have to unlock it and throw it into the box too. But, whenever I do this there is always the risk of letting some of the bad stuff out and I end up sitting on the box again for a while.

Today, I'm sitting on the box. It’s one of the bad days. The bad things are struggling to break free and wreak havoc in my life. I’m trying so hard to keep them in. When I feel like they are about to get out, I push down a little harder.

I know I’ll eventually be OK. I know that eventually I will put the lock back on and tuck the key safely in my pocket, just in case.

And, I know, one day, I’m going to lock that box and throw away that key... forever.

More pictures

The walk is this coming weekend. I'm working on my Faces of Diabetes (which is going to be renamed The Faces of Hope). I have gotten pictures from 12 PWD. This is the last call. If you would like to be included, please send your picture to pennylane5001@mchsi.com ASAP. And, thank you to all of you who have sent pictures of yourself or your loved ones.

A little conversation

A conversation heard in the back seat of my car the other day.

Holden: "Look Riley, you lost an eyelash. Blow on it and make a wish."

Riley: (blowing on the eyelash) "God, take away my diabetes."

Holden: "You know what, little boy? I always wish for the same thing too. "

Riley: "But, why? You don't have diabetes."

(Sad and funny all at the same time.)

I feel like memeing

I don't really feel like writing anything profound or important today, so I decided on a meme. But, first things first, so far I have raised $1,150.00 for the walk. I still have several people and one business that is supposed to be donating money. I'm excited. It's already more than I expected to raise.

Now, on with the meme: (which I got from here)
1. Do you still have tonsils?

Yes, and I currently have a sore throat also.

2. Would you bungee jump?

Maybe at gunpoint. There may have been a time (many years ago) that I might have tried it, but the older I get the more of a wuss I become.

3. If You Could Do Anything In The World For A Living What Would It Be?

I've said pharmacist before, but I'm mad at pharmaceutical companies right now, so I guess I'll have to stick to my current job of being a nurse.

4. How many tattoos do you have?

One. A sunflower on the inside of my right ankle.

5. Your favorite fictional animal?

I just love Dori from Finding Nemo. She's funny. (OK, that's a weird question. Do most people have a favorite fictional animal?)

6. One person that never fails to make you laugh?

Holden. The kid is funny.

7. Do you consider yourself well organized?

No, not really. I just depends. When it comes to diabetes, yes I am, because I have to be. At my job, I'm moderately organized. My house is not organized at all.

8. Any Addictions?

Nope. Unless you count Thursday night TV (pretty much the only night I watch TV on a regular basis; I love Survivor, CSI, and ER. Did anyone see ER last night? It made me cry several times.). I may also be addicted to Zuma. Never heard of it? Go here to play it. But, be warned. I am not responsible for your laundry piling up while you try to shoot colored beads out of a frog's mouth.

9. From what news source do you receive the bulk of your news?

I hate to admit it, but I don't really watch the news or read it. If I read the paper it's the local one. I may catch some news here and there when I'm at a patient's house and they are watching it. I've found that I usually hear the most important news from other people when they talk about it. I do occasionally turn on Fox News in the morning, but it's while I'm drying my hair, so I can't really hear what they are saying.

10. Would you rather go to a carnival or circus?

Probably a circus. It just seems cleaner and safer than a carnival. If I had my druthers, I wouldn't go to either.

11. When you were twelve years old, what did you want to be when you grew up?

A stay at home mom. For real. I have it written down. I wanted two kids, a boy and a girl.

12. Best Movie You've Seen This Year?

I haven't seen many. I really liked Crash (on DVD), but I wouldn't say it's the best movie I've seen. As far as kid's movies go (which is what I normaly see), Barnyard was pretty good.

13.Favoritee alcoholic drink

I don't drink alcohol anymore. But, in the past I liked a Tom Collins.

14. What is the first thing you do when you wake up in the morning?

Pray.

15. Siblings?

None. I'm an only.

16. What is the best thing about your job?

Being a home health nurse, you get to connect to your patients on a very personal level. You're in their environment. You learn so much more about them that way. Patients are so much more than their disease or their symptoms. I think sometimes that gets forgotten in the hospital setting or the Dr's office. I have had a few of my patients for 8 years. They are almost like family.

17. Have you ever gone to therapy?

I've only been to physical therapy (for my wrist). I had my last session on Wednesday. Yeah!!!!

18. If you could have one super power what would it be?

OK, that's a hard question. I'm not sure I'd really want one. The first thing I thought of was the power to heal people. I could heal Riley, but then I'd have people hounding me 24/7 to be healed also. So, no super powers for me. Oh well, I guess it would be neat to be able to fly. Yeah, flying would be nice.

19. Do you own any furniture from Ikea?

I don't even know what Ikea is. I must google it later.

20. Have you ever gone camping?

Once when I was about 8 or 9. I don't remember enjoying it very much.

21. Gas prices! First thought?

Absolutely ridiculous. ( but, they're coming down a little, very little)

22. Your favorite cartoon character?

Spongebob or Patrick

23. What was your first car?

A red Buick Skylark. I got it for my 16th birthday.

24. Do you think marriage is an outdated ritual?

No.

25. The Cosby Show or the Simpsons?

Defiantly The Cosby Show. Bill Cosby if a funny man. Homer Simpson, not so much.

26. Do you go to church?

Yes. I don't remember the last Sunday that I wasn't in church. I go almost every Wednesday night too.

27. What famous person would you like to have dinner with?

I don't know. Maybe Keanu Reeves. I've always like him. He's so private. It would be neat to see what he's really like. (Yes, Michael, of course I would bring you along too)

28. What errand/chore do you despise?

Laundry. It is just never-ending. By the time I get the hamper empty, I turn around and it's half full again.

29. First thought when the alarm went off this morning?

"Must get up and take Holden to school. " It was no easy task dragging myself out of bed this morning. I have a horrible cold and a sore throat. I also am having the worst back pain I've ever had. I don't know why I'm having the back pain. I really wanted to stay under the covers, but I did have to get Holden to school, and I had to get up and feed Riley breakfast.

30. Last time you puked from drinking?

Never.

31. What is your heritage?

Not sure. Um, I'm American?

32. Favorite flower?

Sunflower (see #4)

33. Disney or Warner Bros?

Warner Bros, I guess. I used to love Bugs Bunny. I've never been much of a fan of Mickey. I think he's boring and his voice annoys the heck out of me.

34. What is your best childhood memory?

When I was younger my family used to stay in a cottage at Nags Head for one week every summer. It was me, my parents, both of my mom's sisters and their husbands my cousin, Curt, and my mom's parents (Pop and Big Mama... gosh, I miss them sooo much). I have a lot of good memories from those days.

35. Your favorite potato chip?

Pringles. I can't eat just one.

36. What is your favorite candy?

I'm not a big fan of sweets, but if I had to have something, I'd pick a Reese's Cup.

37. Do you burn or tan?

Both. Doesn't everyone?

38. Astrological sign?

Scorpio

39. Do you own a gun?

No. I hate guns. They scare me.

40. What do you think of hot dogs?

I try not to. Especiallyy about what's in them. I eat them very, very rarely, maybe 2 0r 3 a year.

OK, that was fun and a nice change of pace. Feel free to join in if you'd like. Let me know if you decide to participate, so I can read your answers.

Being me

In a few weeks Riley will have had diabetes for a year. Recently I realized that I had fooled myself into thinking that I'd just gone on with my life. I hadn't. I had let diabetes take precedence over things. As much as I've tried to lie to myself and say that I fit diabetes into life, it was just the opposite. I fit life into diabetes.

I didn't realize this until last week. Something happened that woke me up to the fact that I had lost parts of myself to this disease. Big parts. Important parts.

I've said before that being a mother comes first in my life. But, when diabetes entered the picture, I wasn't just a regular ole' mom, I became the mother of a diabetic. I went into "Mama Bear mode". I wasn't going to let diabetes take anything away from Riley's life. I was going to make sure that Riley's life was just as full as it was before diabetes, maybe even more so. But, in focusing on Riley's happiness, I forgot about my own.

It's like I forgot that I'm more than the mother of a diabetic. I'm also the mother of a teenager. A teenager that three years from now will be gone off to college. I thought I was there for Holden all this time. I showed up at games. I listened whenever he decided to share parts of his life with me. But, was I really there? Was that really me, or was it just what was left after diabetes got it's part?

I'm also a wife. This is where I feel like I've failed the most over the past year. Michael and I have always been very close. He's my best friend. We are one of those couples that, with the exception of at work, you never see one without the other. We do everything together.

Over the last year, that hadn't changed. We still went just about everywhere together. But, once again, was I really there?

I feel like it's almost an art to learn how to maintain the best possible control over the sugars without letting the sugars become a part of you. It's hard. Really hard. I thought I was doing a good job. I thought I'd just made it part of life. We still did the same things as a family as we used to. But, now I realize, I wasn't really there.

I have tried so hard over the last year to teach Riley that he's so much more than a reading on a glucose monitor. That he can do anything he wants. That while it's important to maintain good control, it's most important that while he's doing that he enjoys life too.

I've been trying to teach him that without living it myself. I know that children learn the most by example. What sort of example am I setting for him? He knows the technical stuff. Just today I asked him what he does when his sugar is low. "Eat fruit snacks", he said with a little grin (he really likes fruit snacks). And, what do you do if you're sugar is too high. Again, he gave the right answer, "Take insulin".

While the technical stuff is important, I don't want Riley to let his life revolve around it. Maybe it's unrealistic to think that diabetes won't alter the paths that Riley chooses. I want him to make his decisions, not based on a disease, but based on what he really wants out of life.

If I want him to do that, then I must learn to do that myself. So, from now on, I'm no longer the mother of a diabetic. I'm the mother of a 15 year old and a 4 year old. I'm the wife of a wonderful man who would literally do anything for me. But, most importantly, I'm me.

Feeling klempy

(note: I got the word "klempy" from Lyrecha. It is Yiddish for teary. Being a good ol' southern girl, I had never heard this word before, but I like it and it describes my mood perfectly.)

I have put off writing the post for a few days because I needed to get my emotions in check before writing it. I have been very klempy lately. Ever since Riley's diagnosis I have had times when I would tear up here and there, but usually I get out a good cry and it's over. But, this weepy time has lasted a little longer.

While I was in the car between patients yesterday, I started to analyze why I've been so down lately. Riley's sugars have been good (with the exception of yesterday). Work is going well. My family is healthy and happy. Life is good. So, what is wrong with me?

I think it comes down to a couple of things. First, the walk. I am organizing this walk all by myself. I've emailed, literally, hundreds of people. I've had meetings with people. The last meeting was with a marketing director at the local hospital, who was very helpful. But, the stress of organizing the walk is not what's getting to me. I can handle the stress. I think what's bothering me is having diabetes on my mind 24/7.

You would think I have diabetes on my mind 24/7 anyway. I don't. I used to in the beginning, But, now sometimes I'm almost on auto pilot. As much as I wish it wasn't , diabetes has just become a part of my life. But, to think about the walk, I have to think about a cure. That is what the walk is all about anyway. And, while I am very hopeful of a cure in the near future, I know that there may never be one.

Of course, I've been aware of this from the very beginning. As I've said before, in the beginning I didn't really believe there would ever be a cure anyway. But, to constantly be reminded every day that all of this could be for naught, has kind of worn on me.

The money from the walk is not just going to The Iacocca Foundation. The Iacocca Foundation funds many research projects. But, the money from Walk of Hope is earmarked to go only to the Nathan-Faustman Project. I really believe in Faustman's research. But, by putting my eggs all in one basket, I may just be setting myself up for heartache later if her human trials don't work. But, on the other hand, she needs $11 million for her research. Right now, she has $9 million. But, they've started their human clinical trials now in hopes that the rest of the money will come later. While I know if she starts showing some success more money will poor in, I keep thinking that what if they are in the middle of some very promising research and they run out of money. That would just be horrible.

I am mainly doing this walk because I want to be able to tell Riley I did what I could to help make a cure happen. Like I told my mom the other day, if I just sat back and waited for a cure and that cure never came, I would feel like it was partly my fault because I didn't do what I should. But, by putting the money into one project, if that project fails, I'll feel like what I did was all in vain. Yet, at the same time, I feel compelled to put the money there. I don't usually second guess myself. I don't know what's wrong with me.

While the walk and the thought of a cure (or lack of one), is weighing on me, it is not the sole reason for all of my emotions as of late.

Riley's anniversary is 4 weeks away. I remember early on saying I would not do anything to commemorate that day. I felt like it would be like the anniversary of the death of a loved one. While you remember that loved one on that day and think of how you miss them, it doesn't consume your day. Well, almost a year later, I am commemorating that day in a way. Riley's anniversary is Oct 6th. The walk is Oct 7th. I wanted to do something positive. What is more positive than raising money to find a cure?

It's not the date that is bothering me as much as the fact that Riley has lived with this disease for almost a year. For some reason that really hits me hard. I didn't really know why until a couple of nights ago.

I was lying in bed with my head on Michael's chest. As I was lying there I started thinking about how I remember things as before diabetes and after diabetes. I don't have the best memory when it comes to when things happened. So, when something is mentioned that happened last year, I think "Was that before Riley had D or after?".

But, as I'm lying there it hit me that I only have a few weeks before I won't be able to say, "Last year when Riley didn't have diabetes" For some reason, that's very painful for me. That's when the tears started, softly, at first, just enough to let Michael know by the wetness falling on his chest. But, then it was the sobbing that I did so often in the beginning of this disease.

I think it's almost like when you lose a loved one and your scared you'll forget what they looked like or how their voice sounded. I'm scared I won't remember life before diabetes. I won't remember Riley without his pump. I won't remember going to a birthday party and not carefully eyeballing his piece of cake. I won't remember watching him run around and around without wondering if I should decrease his basal.

But, what hurts the most, is I know Riley will not remember life like that. He was 3 when this stupid disease invaded his body. He will have no memory of the day when he didn't wear a pump or check his sugar. Sometimes I think it might be a good thing he got it so early. I guess you can't miss what you don't remember. But, it hurts that he may never know what it's like to not have diabetes as a part of his life.

So, that's why I've been down for the last few days. But, I really am feeling better now. While I was in the car analyzing why I was feeling like I do, I was listening to a CD that I hadn't listened to in a while. I had turned it down to call my mom to check on how Riley was doing. When I turned it back up a song was on that I usually skip over. It's not one of my favorites. But, the chorus was on and it caught my attention. It reminded me that even though I don't know what the future might bring, I do know that we'lll be OK. It gave me the peace that I needed to go on.

Lord (I Don't Know) by Newsboys

You are the author of knowledge

You can redeem what's been done

You hold the present and all that's to come

Until Your everlasting kingdom

Chorus: Lord, I don't know where all this is going

Or how it all works out

Lead me to peace that is past understanding

A peace beyond all doubt

You are the God of tomorrow

Turning the darkness to dawn

Lifting the hopeless with hope to go on

You are the rock of all salvation

Oh, Lord you are the author

Redeeming what's been done

You hold us in the present

And all that is to come

A short update

Just wanted to stop in and say hi and update you on some going-ons.

First, the walk. So, far, I myself, have raised $565.00. I have two businesses that tell me the check is in the mail and I have about 10 people that have promised to give money before the walk. I have 3 other people helping to collect money and I don't know how much they've gotten so far. So, hopefully, there's much more coming.

Secondly, (also having to do with the walk), I have received pictures of 5 pwd. (Thank you Becky (mom to Grayson), Dave (dad to Andy), Scott, Kris (mom to Hayleigh), and Jen. ) I am still looking for more pictures if anyone is interested in sharing.

Thirdly, Riley's sugars have been great lately. I just hate that as much as I'm enjoying it I'm also bracing myself for the next run of bad sugars. They usually show up just when I get comfortable with how things are going.

And last, but not least, I hope everyone enjoys their Labor Day!!