Category Archives: Uncategorized

Clinical Trial Update, week four.

Four of the days during my clinical trial are deemed “insulin sensitivity” days.

On those days, I have to have my meals planned out, and eat them at the same time. Let me clarify what that means: I have to eat the same thing, at the same time, each of those days. Nothing extra, unless I need to treat a low, which I can only do with glucose tabs.

In addition to that, I have to stick to a strict schedule of BG checks during the day. I have to test at least seven times: Before breakfast, lunch, and dinner. Exactly two hours after breakfast, lunch, and dinner. And at bedtime. Since my days also included a snack between lunch and dinner, I checked then too. I also had a snack after dinner, but it was right around the time I needed to perform the post-prandial (after meal) check, so I killed two birds with one stone there.

Confused yet? Don’t be. We captured it all on a spreadsheet:

SIDay1

SIDay2

This spreadsheet lists all of my glucose testing and meals for these days. If I needed to treat a low, I added that on. I completed and e-mailed a spreadsheet for each of these days to the research team in Virginia.

Now, the idea with the meal plan was not to eat especially healthy or especially unhealthy. In fact, I was told I could eat whatever I wanted. But once I decided on a plan, it was locked in and I couldn’t change it mid-study. The idea is to measure glucose variability on these days. And by sticking to a regimented schedule of glucose checks and identical carb intake at regular times, the research team would be guaranteed that they’d be testing apples to apples, if you know what I mean.

Regarding the meals: This is pretty much what I’m eating for breakfast and lunch most days anyway. And depending where my BG is, I might or might not have a snack in the afternoon. The hard part for me is that at the end of my workday, I’ve got a 15 minute, half mile walk up the street to the subway, which almost always drops me about 30 mg/dL (Hello Big Blue Test). So I try to be at about 120 mg/dL or so before I leave work (there’s another BG check). On all of these days, even with a snack, I seemed to be low by the time dinner rolled around. Sometimes sooner.

Dinner was definitely different on these days for me. Generally speaking, I do not do boxed dinners. I don’t even eat a lot of frozen processed food of any kind. Not because I’m a health nut. I just find doing my own thing with fresh ingredients is tastier. I know… I really like to live on the edge, right?

These days always reminded me of the early days of my life with diabetes. Inject the same amount of insulin at the same time every day… no exceptions. The diabetic exchange diet… no exceptions. Don’t eat anything more than you’re supposed to. If you do all of these things and you’re not staying in range, it’s your fault. It’s no wonder so many of us got our relationships with food messed up.

The difference here was that I knew these days would end, and I’d go back to a normal way of dealing with my diet. That made going through these days pretty easy, despite the occasional low.

It’s too bad (read: unfair) that some People With Diabetes are still made to feel this way about their eating habits. Diets that give us more flexibility in what we consume, and when, will allow us to figure out what works for us quicker and will allow us to eventually settle to a plan that works for each person individually. We’ll still have our not-so-perfect moments. But the truth is: We had plenty of those with the exchange diet too.

Again, not all studies are like this. It’s just a feature of this particular clinical trial, and I wanted to pull back the curtain a little to show you what it’s like. I think I’ve got one more update to give, probably next week.
 
 
 

D-Athletes: Your medal is waiting.

Just a quick Friday reminder about our Diabetes Awareness Month initiative: Champion Athletes With Diabetes. Your medal is waiting!

If you’re living with diabetes, and you’re active; or if someone close to you is living with D and is active, we’ve got an honest-to-goodness medal we’d like to award you. It looks like this:

DSC01185

There are only four simple things to do to get yours:

1. The athlete receiving the award must be living with diabetes.

2. The athletic event must have taken place in the last six months. For now, we’re going with a pretty loose interpretation of the word “event”. If you feel you’ve accomplished something important to you, that’s an event. ‘Nuf said.

3. Send me an e-mail at champswithdiabetes@gmail.com. Tell me your name, name of the athlete (it’s okay if it’s you), and your address (gotta know where to send the medal). Most important, tell me what athletic goal was accomplished, and when. Extra points if you tell me how you felt accomplishing the goal. Full disclosure: I reserve the right to use your testimonial here, on Twitter, and on Facebook. I will not use your name if you don’t want me to. As always, I will never share private information.

4. When you receive your medal, it would be great if you post a photo of it around the athlete’s neck. You can send a Tweet to @ChampsWithD (hashtag: #champdathletes) or post it on the Champion Athletes With Diabetes Facebook Page.

I think D-Athletes are amazing. It takes a tremendous amount of planning, effort, and bravery to compete, or maintain an exercise routine. Heck, sometimes, it’s everything we can do just to walk around the block. Getting out of your comfort zone and taking that brave step is something that should be recognized and rewarded.

If it’s a big deal to you, it’s a big deal to me too. I want to support you, or support the Athlete With Diabetes in your life. Send an e-mail for your award today.
 
 
 

My big news isn’t so big after all.

I’ve been teasing for a couple of weeks regarding big news on the horizon. In short, I was hoping to be a part of Artificial Pancreas testing later this month. Sadly, that is not going to happen.

It’s not all bad news. The study requires participants to have a hemoglobin A1c between 6.0 and 9.5. Mine came in at 5.9. So I’m out because I’ve been working out too much, aggressively attacking abnormally high BGs, and losing a little weight (3 pounds in the last month).

I had blood drawn last week and the result came in under the 6.0 mark. They tested again yesterday to see if there was any difference, and that’s when I got the 5.9.

It’s strange– while I was waiting for the result yesterday, and after I got the result, I felt very much like I used to feel when my A1c would be up in the 8’s. Like I screwed up somehow. Like I’ve failed and I’m entirely to blame.

But how can I be pissed about a 5.9? After having a night (and a few Pabst Blue Ribbons) to think about it, I think the thing I’m really bummed about is the fact that it may be too late to get someone else into this study. I hope not. I don’t want the AP team, I don’t want someone who’s been waiting for a chance to participate, to miss out on what this would mean just because I wound up on the wrong side of the fence.

In the end, I just have to process my disappointment and remember that it is not about me. It’s about you, or your kid with T1D, or your spouse with T1D. The important thing is for development and testing to be successful. It’s not important that I am personally a part of it.

So it turns out my big news is actually nothing. I am talking with the team about another study which, honestly, seems kinda cool. If that comes to pass, I’ll let you know.

In the meantime, let me take this opportunity to remind you that clinical trials are important, and your participation could be a crucial piece of the puzzle toward making life better for People With Diabetes.

To find out about clinical trials taking place around the country, go to clinicaltrials.gov and put “diabetes” in the search box. A recent search found over 10,000 clinical trials. The site remains open during the USA’s government shutdown.

A great resource for finding out about clinical trials and participating in research is Type 1 Diabetes TrialNet. Funded by a number of organizations including JDRF and ADA, TrialNet is set up to explore ways to prevent, delay, and reverse the progression of Type 1 Diabetes.

Today I’m disappointed for me. However, I’ll be thrilled beyond measure if your participation results in something truly great for all of us. Make a commitment today to be a part of something that changes our lives forever.
 
 
 

Here’s to you, Grandpa.

On this #BlueFriday, I’m thinking of my grandfather. I don’t know why. Every once in a while, I think of him when I think of growing older.

My paternal grandfather was the only other person I know of in my family with diabetes before I came along. He was dead for almost five years by the time I was diagnosed. No one ever said whether he had Type 1 or Type 2 diabetes. Maybe at the time he was diagnosed, they didn’t make that distinction. I don’t know. I do know that he took insulin to help keep his glucose in check. After my diagnosis, I remember my grandmother, all of four feet something, pulling an old box out of the back of her apartment that contained things like old, old syringes and antiquated urine strips. She wanted me to have them so they didn’t go to waste. I didn’t have the heart to tell her that they were way beyond their prime.

Mostly, I remember my grandfather during the 1970s. I don’t ever remember seeing him in the act of treating his diabetes. No insulin injections, no treating lows, no glucose checks (though in those days, I wouldn’t have wanted to see that). Diabetes was never discussed, and I don’t remember anything that he ate. I don’t remember hearing him discuss trips to the doctor, where, just like today, he would have had to go just to get his insulin prescription refilled. Mostly, he was quiet when I would see him, usually watching TV. He went to work every weekday until he retired, and drove a Ford Fairlane sedan—manual transmission no less, three on the column, if you know what that means. He never drove an automatic in his life. Always had a crew cut. He lived a pretty typical blue collar life, at a time when you could work in a factory your entire career, buy a house, and help send three kids to catholic school and then to college.

Maybe diabetes just wasn’t a big deal to him. Maybe he didn’t want to make it a big deal. Today, I wonder if he was so sedentary at home because he was afraid of doing too much and going low. But that requires an awful lot of speculation on my part, and the real truth could be the exact opposite of that.

Later in life, in the 1980s, he would spend time in hospitals off and on, until he eventually lost his life late in 1986. I remember hearing stories about how some of those hospital visits involved grandpa fighting with nurses and orderlies who were trying to care for him, and how he always demanded to be released and allowed to go home. He was gradually losing his memory by that point, although in retrospect I don’t know how much of that was grandpa losing his mind and how much might have been hypoglycemia (or even hyperglycemia). Diabetes was hard to treat even in the early eighties, even in a hospital. I feel bad for him when I think of those times when maybe he just needed more food or more insulin, couldn’t get it, and lashed out because nobody caring for him could identify the signs.

Mostly, when I think of my grandfather, I’m glad that I’m living with diabetes here in the 21st century. I have so many more tools available to me to help me survive. Even though there are horror stories of doctors and hospitals screwing up care for people with diabetes, my personal experiences have been quite positive. And with advances in technology, I don’t even need a syringe to deliver my insulin, though I do have to prick my finger to check my BG instead of peeing on a strip. I like to hope that I’m living a better life than he lived, and I’m quite sure that he would have wanted it this way.

So here’s to you, grandpa… Gone, but not forgotten. I hope wherever you are, you’re living a better life too.
 
 
 

#DBlogCheck – My writing. And more importantly, yours.

Hello… I’m Stephen, and I’m a blogger.

You know, I think that’s the first time I’ve ever written that. It may sound weird, but I don’t really think of myself as a blogger who writes. I think of myself as a writer who blogs.

The thing is, I love to write. I enjoy turning a phrase.

I’ve also found a bit of a calling, at least for now, writing about my diabetes. That’s how I qualify that too. I think of writing about my diabetes, even when I’m not. Because if it affects someone living with diabetes, it affects me.

Where am I going with this, exactly?

Chris Snider of A Consequence of Hypoglycemia and the Just Talking Podcast started this idea with a post last Monday that suggested a check-in day. A day for all of us in this glorious Diabetes Online Community (and if you don’t think you are, you’re included too) to make an effort to make a comment on every blog that you read today. If you can’t think of anything to write, that’s okay… Just write the word Check in the comment box. Many of us are turning off the features of our blog software that block anonymous commenters, so anyone can check in, even if it’s just to say “I’m here”. Also, don’t forget to tweet and retweet the goings-on by using the hashtag #dblogcheck. As Chris says, “It’s not about page views, it’s about building a stronger community through interaction”.

Which leads me to the subject matter of this particular post…

Maybe I’m not reading things correctly… That’s possible… But lately, I’m worried that there may be individuals out there who are feeling overwhelmed by all of the bloggers out there, or the more popular bloggers, who might get more page views or get written about a lot. Or maybe you’re a person who has thought about telling your story online, but you’re thinking “Hey, I’ll never be as popular as (fill in the blank)… Why bother?”.

I need to tell you something very important: If you’re only reaching one person, that one person is the most important person in the world. Even the most influential social media darlings can’t possibly reach everyone. But what if you reached that one person that needed to hear your virtual voice on that one day when it mattered most? Would you sign up to pick someone up from the depths of despair? Would you sign up to be the person who shared critical information with someone that wouldn’t know about it unless you wrote about it?

If you make a difference in someone’s life by writing, by tweeting, by instagraming, then you are a hero. That is a fact. Even if the only difference you make is in your own life.

Trust me… this Diabetes Online Community is big enough for everyone. It’s a place where the most supports the least, whether that’s with much-needed supplies, a word of encouragement when you’re feeling down, or with the knowledge that your voice is important– even necessary.

If you don’t know how to get started, e-mail me at the link provided at the upper-left corner of your screen. I will be happy to help you get going.

Your story is the most important one in the world to the person moved by it. Don’t let down the one person who needs to hear you.
 
 
 

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