Tuesday, October 29, 2013

3rd Annual JDRF Walk

Below are pictures from our walk this year. The Sugar Free Floyd's exceeded our fundraising goal for JDRF!

Team Sugar Free Floyds
From left to right: Vince, me, Melissa, Adam, Walt, Rich, Brooke, Zach, Mom, Chris, Karen, Violet, Rory, Brian, and Kayla

 Vince and I

Adam and Melissa

Vince and Walt

Zach and Brooke

Chris and Mom

We were towards the end of the line. Look at all those people!

Tyler State Park, Newtown PA. Beautiful day!

Tyler State Park, Newtown PA. Beautiful day!

JDRF Funds at work!

I loved the back of this walk teams t-shirts!

At first I thought this was Medtronic's Lenny the Lion, but I believe this was a random person dressed up. It was pretty funny though.

Friday, October 25, 2013

Magazine Appearance

Here are a few pictures from the article on diabetes complications that Vince was interviewed for Diabetes Forecast Magazine. It was a big self esteem booster for him and I am very proud!

Why I Walk

I started walking each year for Vince and his brother John. The reason might be obvious. To find a cure! Well, to be honest, I personally don’t see a cure in Vince’s lifetime. Maybe I am just pessimistic but I just don’t see it. What I do see is advances in treatments. When Vince was diagnosed in June of 1980 at 6 months old, Diabetes care was just not what it is today. He didn’t even have a blood glucose monitor. He tested his blood sugar levels by peeing on a stick (much like the keytone tests some use today) The shade of blue would tell him if he was around a BG of 130 or 240. So getting a result of 172 was just not reality. That aside, I have no idea how his mom was able to get an infant’s urine out of the diaper and on to the pee stick… I have a feeling she just gave him his formula and an insulin shot at certain times of the day as the doctor directed and that was that. When he got a little older, he can remember having to pee on the stick to test himself. Then a few years later he finally got his first glucose meter and was able to see numbers. Still at that time, he just took shots at certain points of the day. There was little to no carb counting or ‘sliding scale’ taught. The ‘round the clock care and treatments that T1’s have today was just not there back in the 80s.

So how did we get to where we are today? JDRF Juvenile Diabetes Research Foundation (along with many others) The money we raise is put, not only to finding a cure, but to research and development of better technologies for care. Vince uses some of the newest technologies to help keep him as healthy and ‘controlled’ as possible and JDRF plays a role in making these devices possible.

I also use walk day to celebrate Vince. I like to recognize him and how much he deals with. I like to have that day be all about him. It is a day where the family can come together and let him know that he is not alone in this battle. I won’t lie. Having everyone there helps to remind me that WE are not alone too. This will be our third annual walk and each year our group and effort has grown. I would like to see it continue to grow to really make an impact, not only for JDRF, but for Vince as well. He deals with so much because of this stupid disease. He deserves a day (other than any old birthday) to be all about him (and his brother who also has T1)

Due to the complications and the distance (3 miles), Vince is unable to walk with everyone, but he will be there to enjoy the day. Someone always stays behind with him while the others walk. We will be walking this Sunday. I will post pictures!

Thursday, October 10, 2013

It's Not So Simple

What affects Vince’s blood sugar:

Physical pain
Pump infusion site
Pump malfunctions
Quality of insulin
Basal rates
Bolus ratios
Correction ratios
Extreme air temperatures

And sometimes….. the unknown… meaning, he will have highs and lows and have no explanation whatsoever as to the reason why.

So when someone asks if his Diabetes is “controlled”, we normally reply with a “yes”, but what we really want to say is well, it depends on the day, the hour, and the minute. A Diabetic can go from perfectly okay, to being rushed to the ICU in a matter of seconds. And if this were to happen, it simply means something is ‘out of whack’ and needs correcting. It doesn’t necessarily mean the person is not controlling their disease.

All of these things are what makes Diabetes such a difficult disease to not only live with, but to understand as well.

Wednesday, October 9, 2013

Who I Relate To

I often wonder why I relate to D-moms as much as I do. Just reading their child’s diagnosis story online, I am almost always choking back tears. But I don’t have a child with Diabetes. I couldn’t possibly know what it is like to have to inflict pain on your little loved one over and over as they scream at you telling you not to do it.

But I do relate to the parents. It’s now their new normal; my new normal. Sure, I have been dealing with this since I met Vince, 11 years ago, but it feels like a “newly diagnosed” situation to me. Although I have been dealing with this for 11 years now, I do not think it was until his complications arose that I put much thought into it. All of the sudden, it went from being in the background, to now, being in my face 24 hours a day. Now, I think about his sugars not only when he might be high or low, but what effect it is having on him. A high means more pain than he is already having. Or a few days of bad highs could cause his eyes to be in jeopardy even more since the retinopathy is present. Then I might see him have a low. A low has more immediate effects, but you still think about how it might be affecting his body long term, to have these constant highs and lows.

He now wears a CGM (continuous glucose monitor) He only began to wear this when he stopped feeling his lows. Yet another complication. He would pass out because he had no idea his sugar was so dangerously low. He even had a car accident due to not feeling the lows. So now he wears his CGM 24 hours a day. He never goes without it. It is a blessing to have access to this wonderful medical device. I have no idea where we would be without it. But, it is one more thing that was not present 11 years ago. One more thing that is a constant reminder of all of the complications.

The fact that I have to administer all of his injections (something fairly new for me in the grand scheme of things) is what makes that “newly diagnosed” feeling. These are things I have never had to do, before I met Vince and even after up until a few years ago. This is my new normal, just like the new normal a parent has when their child is diagnosed.