Friday, October 27, 2006

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.

Monday, October 23, 2006

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

Thursday, October 19, 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 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.)

Tuesday, October 10, 2006

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.

Friday, October 06, 2006


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.

Thursday, October 05, 2006


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.

Tuesday, October 03, 2006

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.