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!!

The Faces of Diabetes

I've been trying to think of things to do at my Lee Iacocca walk. I want to have a booth with diabetes education in it. I truly believe that the public needs to know what Type1 is all about so they will be more willing to give money for research.

One other thing I'd like to do is have a presentation called "The Faces of Diabetes". I have access to a big screen and a projector and have a little knowledge when it comes to making a presentation. What I would like to do is show a little presentation of people who live with this disease on a daily basis. I want people to know how many lives this disease touches.

What do you think? Do you want to be included? If so, email me a picture of you or the pwd. Include as much info. as you're comfortable sharing (first name, age at diagnosis, diagnosis date, state in which you live, etc.) If you don't want to share any info. that will be fine too. (pennylane5001@mchsi.com)

So, you OC'ers, you lurkers, everyone. Help me out. Help me make this disease real to other people.

The cure debate

Sandra's post tonight got to me. It didn't just bring on the tears, it also made me evaluate the whole "hope for a cure" thing.

We attended a ballgame tonight at Michael's school. It's 45 minutes away. Before getting in the car to come home we checked his sugar. It was 488. (Wow, I handled it so well at the time, but now just typing the number is making me cry. I just want to inject right here, for the bizillionzth time, I HATE THIS DISEASE!!!!!!!)

Anyway, on the ride home we talked about the upcoming walk. And, I can't think of the walk without thinking of a cure. It seems that most people are very hopeful for a cure in the beginning, but as the years drag on they become less hopeful. I started out with no hope at all. For the first several months I would see someone post about a cure and just think "yeah, right". That's how I coped at the time.

But, I've been doing some research. There are a lot of great, great studies going on. But, my hope is all wrapped up in Dr. Faustman's research. I have read a great deal about what she is trying to do. I have seen a couple of interviews. This woman is for real. The first time I ever saw an interview with her, I just stared at her in awe. All I could think was of how many countless hours she has spent trying to cure my son and others like him. She's devoted her life to it. I cannot even begin to express the gratitude that I feel for her and the many others like her that are searching for a cure for this disease and all the other diseases out there too.

One reason I have to believe there will be a cure is because to believe otherwise would negate everything these people have done. I have so much admiration for these people (researchers). I can't just say, "I admire them, but I think they're wasting their time." Even if what they are doing doesn't find a cure, it still brings us closer to a cure. They can say "OK, tried that. It didn't work. Let's move on to something else."

But, the main reason I have to believe there will be a cure is because my baby believes that one day he will be cured. He, like Sandra's son Joseph, doesn't look into the future and see himself taking insulin. He sees himself "eating all the sugar I want" (direct quote from Riley) How do I look him in the eyes and say "Nope, don't think so." ? I can't. I won't.

While I will never try to squelch his hope, I do try my best to give him realistic expectations. For example, I have told him several times that if there is going to be a cure it is a long ways off. I don't put a time frame on it. Although, the number in my head is 10 years. I don't know why. But, Riley tells me he is going to get the cure when he's 10. That's 6 years from now. I just hope and pray that he knows something that I don't.

I don't feel that I've been very coherent with trying to get my point across here. What I'm trying to say is that everyone has their own coping mechanisms. Some people say there will never be a cure because if there isn't one they will just be disappointed. Some believe there will be a cure because they can't imagine dealing with it for the rest of their lives.

My point is, they are both right. I don't think anyone should try to convince someone of the cure if they don't want to be. And, I certainly don't believe that anyone should try to squash someone else's hope. Because, either way, they are doing what needs to be done to cope with the situation they are in.

But me, I'm on the hope team. I cannot imagine giving up and saying that Riley will never be cured. I just can't. Will I still feel this way 15 years from now if there's still not a cure? I don't know. I hope I won't have to find out.

A little reminder

A while back, Riley was showing some interest in soccer. So, when we saw an article in the paper that showed they had sign-ups for soccer for Riley's age, we signed him up.

To say I wasn't a little anxious would be a lie. I wasn't too worried, but I did think about what the extra activity might do to his sugar. The thought of him falling out on the field did cross my mind.

Riley had his first practice today. I felt pretty good about it. He had just eaten about an hour prior to practice and was 292 when practice began. No real worry of him dropping too low.

Even so, when we pulled up to the field, I reminded Riley if he started to feel like his sugar was low that it was very important to tell someone. He said, " Well, Mom, I bet someone else here has diabetes too." I told him "probably not". All the time thinking we'd be lucky if anyone there even knew what Type 1 diabetes is.

His coach is a woman. About half way through the practice I noticed what was written on her T-shirt: Camp Needles In The Pines At first I wasn't sure why that sounded so familiar. But, when I realized where I had heard it before, my heart started to beat a little faster.

Camp Needles In The Pines is a camp in NC for children with diabetes. All I could think was "Why is she wearing that shirt? Maybe she works at the camp. Maybe her child has D." I quickly scanned the field for any signs of a kid with a pump. I didn't see one. Still, she had to be associated with diabetes in some way.

When practice was over, she came up to ask me if Riley was doing OK. She knew he has D because I had put it on the soccer application. Turns out she's a diabetes educator! That really helped to ease my nerves a bit. At least she knows something about diabetes and will most likely know when to alert me that something may be going on with Riley.

She brought snacks and juice for all the kids. She even had sugar free koolaide just for Riley. She made sure to tell me that it had 2g carbs in it.

I just feel so blessed right now. I don't think it's a coincidence that the soccer league that we signed Riley up for has a diabetes educator as a coach. And, she got to be Riley's coach. She's coaching Riley's age group because she has a son that is Riley's age.

Sometimes I get so wrapped up in the sugars and trying to control them that I forget who is really in charge. I think this just might be God's way of reminding me I'm not alone in all of this. He's watching out for Riley too.

A Special Bond

Michael came home from his first day back at school with some disturbing news. All the teachers had to stand up and do the "what I did over the summer" thing. A fellow teacher stood up and announced that her six year old daughter was diagnosed with Type 1 diabetes this summer.

Michael talked with her afterwards. Best I can gather she felt lost and scared and overwhelmed. I felt such empathy towards her.

Hearing of this little girl made me think back to those first few weeks after Riley's diagnoses. At first, I was just numb. I think I was in shock for a while. Actually, I know I was. Everything seemed surreal. I was poking my 3 year old with needles every day. That just couldn't be right. But, it was. And, over the first few weeks I had to somehow grasp that it wasn't going away.

Before diabetes entered our lives I had always thought I was a strong person. I could withstand whatever came my way. I had what I call the "nurse mentality". I was very good at being strong and keeping a level head in bad situations. If I needed to cry when the crisis was over, I could. But, those break downs hardly ever came.

After the shock and numbness wore off, I realized the "crisis" in this particular situation was never going to be over. I broke down several times a day. I'd cry myself to sleep at night. I'd sit on the edge of Riley's bed and watch him sleep as his sheets became damp with my tears.

I'd never cried like that before. This crying came from the depths of my soul. Places I never knew existed. I saw no end in site to my grief .

This super woman had found her kryptonite. Something bad happening to my child had incapacitated me. I felt weak and inadequate. I felt like a failure.

That's why when Michael came home with the news about his co-worker, I got a sinking feeling in the pit of my stomach. I don't know her. I don't even know her name. But, I know how she feels and my heart aches for her and her daughter.

When I went to the mailbox yesterday there was a special envelope. I knew it was coming and as soon as I saw it a huge grin spread over my face. In it was a donation for Walk Of Hope. This donation came from a woman I've never met. I have no idea what she looks like. She lives hundreds of miles away. But, yet, she felt a need to send a donation for our walk.

Why would she do this? Because her son was diagnosed with D when he was 3 1/2. Because she's felt all the same feelings about this disease that I have. Because, she looks into her son's eyes and envisions a day when he won't need insulin anymore.

We parents of children with diabetes have a special bond. I've rejoiced over Daniel's run of good blood sugars. I've cried over Danielle's diagnosis of Celiacs. I've swelled with pride over how Joseph stood up in front of a crowd and shared his experience with diabetes.

As much as I thought I'd lost my strength in the beginning of this journey, I now realize that I only stumbled. We parents of children with diabetes are a hearty crew. We are strong. We don't have a choice but to be. We all stumble occasionally and sometimes we fall. But we pick ourselves up and brush off our knees and trudge ahead for the sake of our children. They are watching us. They need us.

While I wish Riley had never gotten this disease, I am honored to be counted among the Sandras, Vivians, Jamies, Beckys....of the world. We do have a special bond.

But, I still mourn when another parent joins our ranks, because that bond we share is cemented in heartache.

Long time, no post

I have been neglecting the blog lately, but it hasn't been all me fault. The filter on my computer has decided to block blogger.com. So, I haven't been able to post. I am currently posting from my work computer (not on company time). I am trying to get this straight with the filter people. I have been reading blogs, but because of the filter am not able to comment on any that are written on blogspot. So, I haven't dropped off the face of the earth. I've just been blocked.

An update on the arm: I got my splint removed on July 26th and have been back at work since then. I am taking physical therapy, because there are still things I cannot do with my hand. ( I am still typing with one hand) But, I see progress every day in what I can do.

The walk: Walk of Hope is scheduled for October 7th. I have raised $325.00 so far ($300 of that came from local businesses). I have only had two people to volunteer to be on the team and help raise money. (out of about 60 people that have been asked) But, I'm trying to stay positive. Every little bit of money helps. Every little bit of money brings us closer to a cure.

Speaking of a cure, I got this from Vivian's blog. I know there are some that think there will never be a cure, but just humor me and go here and check out what Dr. Faustman has to say. Also, check out the podcast on the same page.

I was very impressed with what she had to say. She wasn't trying to give any false hope. She was very realistic that if what she is doing turns out to be a cure, it will still be a ways off. Right now, she is getting human blood samples and trying to identify the bad T cells that are causing the destruction of the beta cells.

On the diabetes front things are the same... up and down. We've had a few 300s and a few 60s and several numbers in between. But, Riley is happy and healthy. And, that's what really matters at the end of the day.

hope, hoPE, HOPE

I received my JoinLeeNow news letter today and was so excited to read about how the Faustman trials are going and about the other trials that are being supported by The Iacocca Foundation.

This story got my attention more than others:
Dr. Jerry Nadler – $370,000
University of Virginia, Diabetes and Hormone Center of Excellence Charlottesville, VA
Clinical trial in type 1 diabetes

Lisofylline (LSF) is a novel small molecule immunomodulator that has been shown to be effective in halting autoimmune damage to pancreatic insulin producing beta cells in experimental models of type 1 diabetes. LSF does not impair the normal immune system but reduces the activity of a key cytokine called Interleukin-12 which plays a major role in leading to type 1 diabetes.

Recent evidence suggests that the body is attempting to regenerate insulin producing cells in type 1 diabetes but that the slow growth rate of beta cells and ongoing autoimmunity prevents the body from reversing diabetes. It has been recently shown in a publication that the combination of a beta growth factor called exendin-4 and LSF given by subcutaneous minipump can fully reverse established type 1 diabetes in the nod mouse model. Most animals have remained with normal blood sugar for up to 5 months after the removal of the medications. The exciting results recently presented at the ADA 2006 Scientific Sessions shows evidence of new beta cell regeneration in these treated mice.

LSF has been shown to be safe in human trials when given by the intravenous route but this is not a very practical way of using this medication for the majority of people with type 1 diabetes. The current funds will allow the reformulation and safety testing of LSF for subcutaneous delivery. It is anticipated that a clinical trial to test the safety and effectiveness of subcutaneous delivered LSF for treatment of type 1 diabetes will be initiated within a year.

LSF alone or in combination with a beta cell growth factor could offer a safe and effective way to help the body regenerate its own insulin producing cells resulting in reversal of type 1 diabetes.

When I read things like this, it just gives me the hope I need to keep moving forward. As a mom, I need that hope. I need that push to look forward to Riley's future with a smile on my face. Because, in that future, I see a cure. I don't think it's really soon in the future, but it's there. And, I want to do whatever I can to make that cure possible.

So, I've been working diligently on my Lee Iacocca walk. I've gotten the walk listed on the JoinLeeNow website. I've gotten a few donations and a few team members. I've sent out letters to local businesses. I hope I hear back from some of them soon.

I was feeling kind of down the first few days after I started planning the walk. I had to look up some diabetes statistics that just didn't sit too well with me. But, now I know that Riley is not going to be a statistic. He's going to be a young man who doesn't have to count carbs or test his sugar.

Some out there don't believe there will ever be a cure. Just remember that it wasn't that long ago that the phrase "I used to have cancer" was not heard very often. But, now, thanks to research it's heard more often than not among those who have been touched by cancer.

So, I'm just going to look forward to when Riley and others like him can say, "I used to have diabetes".

Those will be the sweetest words I've ever heard.

Finding hope in an email

There are so many things going on in my brain this morning. So much to think about.

The last few days have been very rough as far as diabetes is concerned. Riley had a set change on Sunday, Monday, Tuesday, and early this morning. Sunday, his needle came out while he was using the restroom. It was due to be changed Sunday, so not a big deal. I wanted to change it after he went swimming, but it was OK.

Monday he started out at 121, which was nice. By lunch he was 304. Not good, but these things happen occasionally. He got a correction and a bolus for lunch, but his sugars were still in the 300s (385, 342). I looked at his needle, but didn't really see anything wrong. Later, when I went into the bathroom with him to test his ketones (which were small), I noticed blood in the tube. Michael was working, so we went to my mom's house so she could change the needle. Then, I must have over corrected because he was down to 54 a little while later. Then, 128 and 183. He ate an unusually large amount of food, most of it being carbs. He got the largest bolus he's ever gotten, 2.0. He then spiked up to 315 then 364. A correction brought him down to 272. But, then he went back up to 290, 289, 291. He just wouldn't come down even though we were correcting him. And, this was in the middle of the night when we usually wouldn't correct so much. Eventually, Michael just went ahead and changed the set. He didn't come back down until lunch time and then was 125, 197, 171, 133. OK, now everything was back to normal.

That was until 9:30 that night when he spiked up to 331, he got a correction and 2 hours later was 352. By this point I've had about all I can take and Michael is about to pull his hair out. What in the world is going on? I've increased his nighttime basals already, but it hasn't seemed to make any difference. An hour later, he's 364. How, how, how? I just don't understand. His set looks perfectly fine. But. he's not coming down, again, even with corrections. So, Michael did another set change and another correction. In an hour and a half, he's 190. He woke up at 146 this morning.

I just don't know what's going on. With the exception of the set with blood the other sets have looked perfectly fine when they came out. The insulin is brand new. But, it couldn't be the insulin because his sugars have been fine during the day. It's just the nighttime that his sugars spike up, not just a little, but a lot. I'm going to wait a day or 2 and increase the nighttime basals again. Has it really been the sets or is the honeymoon over? There are so many reasons why his sugar may go up. How do you know which one is the culprit? And, how long must Riley endure these high sugars until I figure it out? I swear if he spikes up again tonight, my head just may explode. I'm just so emotionally drained right now.

It seems that whenever I get the least bit comfortable, just when I think everything is going to be OK, diabetes has a way of slapping me in the face and waking me back up to reality.

As much as I want Riley to have a normal life and as much as I want to fool myself that everything is fine, it's not. It is not fine. It is not normal. It is stressful and draining and a burden that he must bare on his own one day. I try not to think about that often, the future. I just try to live in the present.

But, today, all I can think is one day Riley will be up at 2 AM changing his set in a sleepy fog wondering what in the world he could have done differently. Worrying about what affects these sugars are having on his kidneys and his eyes. And, knowing there's really not a darn thing he can do, but take what life has dealt him and go on.

I am crying so hard now I can barely see the keyboard. I haven't cried about diabetes in a while. It's just so hard. It's just so damn unfair. I know things could be so much worse. But, sometimes I just can't help but think why did this happen to my baby. Why? Why? Why? But, no matter how many times I scream it, there is never an answer.

When I started this post I had some hope. I was actually a little excited. I had just received a response to an email I sent last week. I now have a location for my Lee Iacocca walk. Now, I can start planning. Now, I can ask others to join the team.

Now...I can hope again. I can look to the future and see, not complications, but a cure. A cure for my baby and all the others who live with this disease every day.

My Opinion

Because I said I would let you know my feelings about the whole "should people with D have kids" debate, here it is.

When I first clicked on the link (debating the issue) I got angrier and angrier with each comment I read. Then, a few hours later I calmed down enough to think rationally.

First, I felt sorry for the person who said that they would have rather not been born than to have diabetes. It's just my opinion, but from reading their comments, they probably would have felt that way about themselves even without D.

Then, I realized I wasn't upset because someone may decide not to have child because they are afraid to pass diabetes onto them. That's a personal decision for them to make. I realized what upset me so much is that people were telling other PWDs what they should and shouldn't do. How dare they say my child shouldn't have children. It's really none of their business whether he has children or not. That's Riley's decision to make with his future spouse.

I made the decision not to have any more children the day that Riley was diagnosed. I came to this decision because I didn't want to take the risk of having another child with D. I didn't make this decision because I think that there are enough people with D in the world. I made the decision because I couldn't imagine taking care of another child with D. So, my reason was purely selfish.

But, if I knew before I got pregnant that Riley would get D, I still wouldn't have changed a thing. I can't imagine my life without him, diabetes and all.

And, just because I don't want to risk having any more children with D doesn't mean I think other mothers shouldn't do it. Like I said before, it's a personal decision.

So, to those of you out there who feel like people with D shouldn't have children, just worry about your own life and leave them alone. I'll say pass a law to prohibit people with D from having kids as soon as one is passed saying ignorant people can't procreate either.

What's your opinion?

Today I was reading this, which I found on a link on Kassie's blog. I had read Kassie's post a couple of days ago already, but this post by Tiffany got me to revisit it again.

The first time I read Kassie's post, I didn't click on the link because,well, I was trying to avoid getting upset.

I have tried to avoid controversial posts since this one that I wrote in January. I received a couple of not so nice emails because of my views on the subject. But, I just can't let this subject go by without saying something.

But, for now, I'll refrain from telling you what I think and listen to what you think. Should people with Type 1 D have children of their own, knowing that they could pass on the genes to their children?

If you've read my posts before you probably know how I feel about this, but then again maybe some of my thoughts may surprise you.

(Side note to Sassy. If you are reading this, thank you for mentioning me in one of your posts. I couldn't figure out how to email you, so I'll just thank you here.)

A ( not so gentle) reminder

Holden has had allstar games this week. Yesterday was a marathon day. We arrived at the ballpark at 12:45 PM. Holden's game started at 2 PM. They won that game so we had to wait around for another one, that didn't begin until 5-5:30.

During all this time, Riley played in the dirt. He ran around kicking a soccer ball. He played in some water. Because of all the running around, when another little boy came up with a sucker and Riley wanted one, he was able to have not only one, but two throughout the day. His sugars were great.

He ate a hot dog at the game. When the game ended at 7:30, we went to a restaurant to eat. Riley had already had one supper, but he ate again. Actually, he ate a lot. This supper included a cupcake and a few M & M s (M & M s were given prior to the meal due to a sugar of 65). Still, one hour after supper (even though you're told not to test that soon after a meal), he was 228. Not bad at all.

We finally got home around 9:30 PM. It was time for his usual bedtime snack time. His sugar was 138. Too low for bedtime. Also, he had 0.20 units of insulin on board from supper. So, he got an uncovered snack, like he does most nights.

After Riley had gone to sleep, I commented to Michael about how great Riley's sugars had been. I should have just kept my big mouth shut. I told him how it was so nice that he could have the suckers, cupcake, and M & M s like a normal 4 year old. And, by "normal", I don't mean Riley is "abnormal", but if you have a child with D you know what I mean.

I read it on other blogs and I've said it myself: "People with Type 1 D can eat whatever anyone else can, they just have to cover it with insulin". While this sounds great in theory, it's not entirely true. Yes, they can eat what everyone else eats, but no matter how hard you try and how vigilant you are about giving what you think is the right amount of insulin, their sugars are going to be affected. You may get it just right some times, but there will be times where that cupcake or yeast roll just totally screw up the sugar.

Anyway, I felt good about his D and the day. When we finally went to bed around 11:30, a quick sugar checked revealed a sugar of 294. Not great, but I knew the snack would shoot it up a bit and also took into account all the extra activity during the day that was sure to drop his sugar during the night.

To be on the safe side, Michael got up an hour and a half later to check again. This time his sugar was 434!! I quickly started going through all the reasons this could be. He could have gone low and rebounded, that bite of Mac 'N Cheese he ate could be kicking in, or, of course, he could have a bad set. A check on his set revealed it was still in and there wasn't any blood in the tubing or anything else that would reveal that there was anything wrong with the set. He got a correction, but not as much as the pump suggested. We tend to be conservative with his corrections in the middle of the night, because a lot of times he'll drop very quickly and way too much. An hour later, he's 428. Hmmm, not much difference, but we really didn't give him a lot of insulin.

I made Riley crawl out of bed at 2 in the morning, so I could get him to go to the bathroom so I could check his ketones. They were OK so far, so I gave another correction. But, the next check (393) didn't indicate that any of this was working. So, out came the old set and in went a new one. We corrected again. We were conservative again because we have no idea if he received any of the previous corrections and if he did, how much he actually received. He was 292 at his next check. Then, 138. So, mystery solved, it was the set.

The times for sugar checks were 1:03 AM, 2:09 AM, 3:21 AM, 4:24 AM, 5:52 AM, and 8:01 AM. Since I am still doing everything with one hand all of the nighttime checks have become Michael's responsibility. I can check a sugar with one hand , but only when Riley is cooperating. At night, he'll sometimes close his hand or roll over and I have no way of stopping him. I have also not changed a set since my surgery. Even though I woke up with each sugar check and helped hold Riley for the set change, most of it fell on Michael. He got up basically every hour and then spent about 30 minutes doing a set change. Then, he got up and went to work in the sweltering heat all day. I can only imagine how he's feels right now.

So, that "normal" feeling quickly went out the window. I was not- so- gently reminded that my son has a chronic disease and no matter how hard I try to pretend that he's just like very other 4 year old, the fact remains that he can't be carefree about what he eats..ever.

This is one reason I'm trying to organize a local walk to raise money for The Lee Iacocca Foundation. I can't just sit back and let this disease win. I want to be able to look Riley in the eyes and tell him, I've done everything I can to get rid of this disease.

Updates

Just some quick updates since I'm still typing with one hand.

Riley had an endo appointment on June 30th. His A1C was 7.8 (whoo hoo!!). This is down from 8.1 and is a very good A1C for his age. He had lost 1/2 pound since his last visit. The endo wasn't too concerned, since he's on track to gain his 5 pounds a year that most kids his age gain. He has to have some labs drawn. We haven't done them yet because they have to be fasting. Everytime we make arrangements to go he ends up going low at night, so he has to eat, therefore he's no longer fasting. We'll get them done. She's checking his lipids, his thyroid, and the dreaded celiac disease. Dr. M doesn't think he has any problems with any of these. She's just doing it for screening purposes. Even so, I'm nervous about getting the results. Celiac is something that I've had in the back of my mind since Riley's diagnosis. I cried the other day when I read that Danielle had been diagnosed with it. These kids have enough restrictions without Celiacs thrown in too.

I had my follow up with the Dr. on Monday. My wrist is healing, but is still in a splint for another 2 weeks. So, I still can't use my left arm for a while. They took my other splint off and my hand is frozen in an awful position. When I'm finally out of my splint, I'll need 4-8 weeks of physical therapy. But, the Dr. assures me I'll be able to go back to work while doing therapy. I'm starting to run out of time off from my job. The pain is still getting better every day. I hurt a lot Monday and yesterday because the new splint kind of put my arm in a different position, but it's doing better this morning.

My mom took me to my appointment Monday and Riley and Holden went too. We had been there (an hour away) all day because Holden had a Dr's appointment that morning and my appointment wasn't until 3:00. I went into the room with the Dr. and everything seemed fine. But, when I came back out into the waiting room, I took one look at Riley and I knew something was wrong. He looked like he felt horrible. We went and bought a thermometer. His temp. was 103. He was complaining of a sore throat. His pediatrician is in the same city, so we headed there. They did a strep test which thankfully was negative. We were told he had a virus and to give him Ibuprofen or Tylenol and keep him well hydrated.

This is Riley's first illness since D. And I think it's about over. He's been temperature free for 12 hours now and his sugars are looking like they are back to normal. Because of his virus, he's been running in the 300s at times. We've been testing and correcting every 2 hours. We decided to try it that way instead of increasing the basals. Now, I need to clear all the ketones out of his system. He did well with them up until last night. They were moderate. It's hard to make a 4 year old drink when he doesn't want to, but Riley's done pretty well with it all.

This bought with illness brings back memories of his last one. It was almost exactly a year ago. I know this because it happened during one of Holden's allstar games. He spiked a temp up to 103 all of a sudden. Holden's allstar games begin again today. I have vivid memories of his last illness because it happened 3 months prior to his diagnosis. I've always suspected that it was the virus that did in his beta cells.

Now, if only this virus would fix them again. If only...

still here

just a very short post to let everyone know that i'm still alive and well. i had surgery on the 26th and this is the first time i've felt well enough to sit at the computer.
i had torn the cartilage in my wrist and that had to be repaired. but, when the dr. got in my tendon was messed up too and he had to repair that. he also had to cut a piece of bone out of my ulna. very much more painful than what i anticipated. my hand and left arm arm in a huge splint that i can't take off. my fingers are very swollen, and i can't even begin to straighten them without having immense pain. i can only imagine the physical therapy i will have to take when this is all over. but, today is the first day that i haven't been popping pain pills on a regular basis. i go back to the dr. on july 10th.

just wanted to let everyone know how things went. i'm going to try to get michael to type a real post for me sometime. this typing with just one hand is not working very well.

Some accolades

Holden played his last baseball game last night. It wasn't just the last game of the season, but it was his last game in that league. He has been playing in this rec. league since he was six. But, the league only goes up to age 15, so he won't be able to play there next year. It was a little sad.

I started thinking last night that he will be going off to college in 3 years. It will be here before I know it. He's growing up so fast and I'm trying to cherish every moment between now and then.

I'm so proud to be his mom. He really is a great kid. He has his moments. Sometimes he makes me want to pull my hair out. He is 15 after all. But, mostly he's a good human being.

He's a very good athlete. He's really good at basketball and he's not too shabby at baseball. But, he's never cocky about it. He doesn't throw a fit when the ref or ump makes a bad call against him. I don't know if this happens in your area or not, but it happens here. He doesn't have a "I'm better than you attitude." He's confident about his playing, not cocky, and there is a big difference between the two.

They gave out awards last night. He made the allstar team. So, technically, he still has a few games to play, but it will be off somewhere else. Not in the ballpark in which he's always played. He also received a trophy for "homerun king". He and another boy tied with three home runs for the year. (One of them being a grand slam.)

The boy that he tied with is one of those kids who feels that he's such a better player than everyone else and he makes sure everyone knows it. Several people had come up to me to say they hoped Holden beat him. Now, it didn't really matter to me. I wanted him to do well. But, I'm much more concerned about his attitude. I want him to be a graceful winner as well as a graceful loser. That's what is really the most important. Besides, Holden has been playing ball with the other boy since they were 6. He is a good player and I wanted to see him get his recognition too.

I don't think I'm getting my point across very well. What I'm trying to say is that all those awards don't mean anything. While they are nice and I'm proud of him, it's the fact that he's such a nice kid that makes me the most proud.

During basketball season, we get a lot of comments from parents and coaches from other teams what a great player Holden is. Later, I'll walk by those same people and hear them say, " I don't like to watch so and so play. He just thinks he's so good." Unfortunately, you'll here these same people cheering against these kids. Once again, it comes down to the attitude on the court. It all comes down to being nice.

That's one of my pet peeves. People who are just not nice. I realize everyone has a bad day now and again, and may say or do something that they shouldn't have. Everyone screws up. But, it's the people who are just consistently mean and rude that get under my skin. Why can't people just be nice?

Sorry, I kind of got up on a soap box for a minute there. Back to Holden. I've kind of rambled a bit. He's not just a good athlete. He's also a very bright kid too. He's in the Beta Club. He ended this year with a 3.77 GPA (out of 4.0) And, that's without hardly ever cracking a book. If he would actually study once in a while, he could be a 4.0 student. He says he's going to start focusing on grades a little more next year. He has told me he wants to be a Dr. Now this is not anything I ever thought he'd want to be. When I asked him why, he said, "Because I want to find a cure for diabetes." Then, I asked why he didn't become a researcher instead. "Because I want to take care of people too."

Holden,

I just want you to know how much I love you and how proud I am of the young man that you have become. Know that you will make mistakes along the way, but how you handle those mistakes and what you learn from them is what really matters in the end.

You can be and do anything you want. Just stay down the path you've chosen and everything will be OK. There will be ruts in the road along the way and maybe a detour or two. But, I know that if you keep the attitude that you have now, you'll make it.

I love you and I'm so proud to say that I'm your mom.

Love,
Mama

The Low

I got home a little later than usual last night. A Dr's office called at 4:55 PM to change a patient's insulin dosage. The patient is Type II, but is on insulin. She has all sorts of mental issues and can give herself the insulin, but is not competent enough to draw it up. That's my job. I draw up a week's worth at a time and leave it in the fridge for her. Since she is on nighttime insulin, I made the trek out to her house after hours to fix her insulin.

Anyway, I called Michael and told him that supper would be a little later and asked him to check Riley's sugar in a bit to make sure it wasn't going low. He checked. He wasn't low.

Once I got home, I immediately started on supper. But, when it was about half-way done, the profuse sweating and the shaking started. And, I'm not talking about Riley, I'm talking about me. Michael was talking about something that went on at work (since school is out, he puts in pools and spas during the summer). I was just sitting on the couch and looking at him and trying to grasp what he was saying. I was sweating so much that my shirt was sticking to my back. And, my hands were shaking so badly I couldn't even untie my tennis shoes.

On a whim, I got Riley's machine. My sugar was 60. Now, how did that happen? I did skip lunch yesterday, but that's not unusual for me.

I drank some soda and by the time I got done with supper I was feeling better. But, I was so worn out. I felt like I had run a marathon. I just lay on the couch for a while.

All I kept thinking was, "Is this how Riley feels every time?" I was only 60. He's been much lower than that before. He doesn't usually act tired afterwards. Is that normal or was it just me? I really felt like a limp dish rag.

I guess I just got a taste of what Riley goes through. And, it just breaks my heart.