Tag Archives: PWDs

Hey! You look just like me!

September 15, 2014 – 9:33 am

A number of times, I’ve read blog posts from people who have seen someone wearing an insulin pump in public. In many of those instances, the writer can’t quite bring themselves to say something to the person wearing the pump. And I never understood why, until it happened to me too this past weekend.

I got up early Saturday morning to help my best friend get things set up for a flea market his group was sponsoring. It turned out they didn’t really need my help at all, so after 45 minutes or so I stated the obvious: “You don’t really need me now… I’m going to go home. I’ll call you later to see if you need me to help break things down when it’s over”.

I said my goodbyes, and as I walked out and toward my truck, I saw a guy, about my age, with exactly the same pump, in the same color, that I wear.

I stopped in my tracks as he walked by. I couldn’t believe it. I mean, yeah, nearly 30 million people in America live with diabetes. But I thought I was the only one in Baltimore. Okay, I knew I wasn’t the only one here, but sometimes it seems like it. Anyway, I thought hey, this is a perfect opportunity to meet someone else from the pancreatically-challenged part of the population. I should run and grab this guy by the arm and have a long conversation with him!

But before I could catch up with him, I noticed something else. He was enjoying himself. He was enjoying his day. I watched him from a distance, for about five minutes or so, and I realized this is the life that we had hoped for when insulin pumps were brought to market for the first time. Heck, this is what we want when artificial pancreas systems make their way to the market.

We just want to live our otherwise normal lives, in a normal fashion, just like people without diabetes do. Somehow, watching this fella enjoy the flea market, I was able to enjoy knowing he felt like the rest of the people around him.

In this case, I could really appreciate the fact that Diabetes Man, living his life, doing the same things as everyone else around him, was more important to me than getting to talk with someone locally who lives with diabetes 24/7 like I do.

It was a good indication that I need to remember to be grateful for the amazing advancements that have already made our lives better, even while we advocate for even better advancements for the future. As I headed home, my full heart and my big smile were indications that diabetes can and will be lived bigger and better every day by myself and Diabetes Man at the flea market. Nothing will stop us from enjoying life to its fullest.
 
 
 

By StephenS | Posted in Artificial Pancreas | Also tagged , | Comments (6)

People with Diabetes need a seat at the table– Sign this petition NOW.

September 2, 2013 – 9:54 am

Your help is needed right now– this minute. Take five seconds to go to Change.org and sign a petition urging the U.S. Food and Drug Administration to hold a patient meeting on Diabetes.
 
 
The backstory, from DiaTribe, who is sponsoring the petition:

“The Food and Drug Administration has begun to hold a series of patient meetings to gain a better understanding of specific diseases. Over the next five years, the agency plans to conduct at least 20 such meetings on conditions ranging from Chronic Fatigue Syndrome to Narcolepsy to Irritable Bowel Syndrome.

But not diabetes.

That is unacceptable.

Four “slots” remain open, and we want the FDA to add diabetes to its meeting docket for 2013.”
 
 
It is well known that 26 million Americans are living with diabetes. Nearly 80 million more in my country are at risk of developing diabetes. Despite years, even decades, of advances in care, therapy, drugs, and technology, more people are affected by this disease than ever before.

Not only that… Consider the fact that the federal government was on the hook for over 60 percent of the cost of diabetes last year. In case you’re wondering, the government’s tab amounted to nearly 152 billion dollars. By my definition, that amounts to an epidemic and a fiscal crisis. At the very least, it is proof positive that People With Diabetes need and deserve more attention. Over 3,000 people so far agree with me. Will you be next?

Be one of 5,000 or more to sign the petition. Help People With Diabetes send a clear message to the FDA.

We matter.

We will not be ignored.

Go now, and sign the petition:
http://www.change.org/petitions/us-food-and-drug-administration-sponsor-a-patient-meeting-on-diabetes?q=petition
 
 
 

By StephenS | Posted in Support | Also tagged , , , | Comments (4)

Me and my pump.

April 23, 2012 – 11:26 am

The pump has been with me for a little over 2 years now. Officially, it’s a Medtonic Minimed Paradigm® Revel 723 pump. Unofficially, I have a love-hate relationship with it. Actually, you can make that a like-hate relationship. But that’s not as bad as it sounds.

When you add up the score, it’s not all that bad:

Pros
First and foremost is the convenience factor. I can go just about anywhere (not the water) with it and get insulin when I need it. A good example for me is my too infrequent day trips to New York. Instead of injecting a great deal of Lantus and hoping that my BG stays in range all day, or taking along a flexpen with something fast-acting and then looking for a quiet place alone from time to time (try finding that in Manhattan), I have what I need resting on my belt. Love that convenience.

It does help me keep my numbers in line a little better, but my numbers were pretty good for about a year before going on the pump. What the pump does is make it easier to manage my numbers. When I was first diagnosed with type 1, I was put on a twice per day Humulin 70/30 product. Same dosage every day, no matter what. That lasted for about 14-15 years. Then after having a difficult time handling lows, I was introduced to Lantus. It changed my life. For about two years. After that, I started to have additional issues with lows in the morning and highs late in the day. So the answer to that was to cut down on the Lantus and use a fast-acting insulin (Apidra) for boluses prior to eating.

By the way, this was the first time I’d heard about the word “bolus”, or even the idea of adjusting insulin dosage based on my BG and my carb intake. About 18 years into my diabetes. Until then, it was the same dosage, same time, every day, no matter what.

The next part is my fault. I found the bolus idea to be too much of a nuisance during the day (crazy, I know). Particularly because I work in a conservative environment where appearing to be out of the norm has, in the past, sometimes been seen as weakness. So I only bolused with the fast-acting insulin at night, at home, where only my family would see it. At work I still check my BG before lunch in a separate room with no windows. People at work know about my diabetes. Some of them have freaked out about it at times. Or maybe I’m still a little unsure about giving them a reminder about it every workday.

I eventually started looking into insulin pumps about 3 years ago. I decided I wanted to check it out. I loved the idea of having continuous delivery, and the fact that I could program everything in, even variances to my routine (I’m talking temp basal adjustments). I finally got hooked up with the Minimed after I started with my super Endocrinologist, who has been great.

Cons
The hardest part about wearing a pump is that you are wearing a pump. It is attached to you, 24/7/365. You can’t understate that. But let me be clear in saying that you can get used to it. And if you’re not fond of giving yourself multiple injections per day (never a problem for me), I guess one stick every few days is not so bad.

I am not a CGM (continuous glucose monitor) wearer. I tried it for a while after going on the pump, but there were two big reasons why I gave it up. First was the annoyance of having another thing attached to me all the time. The other was that I’m very concerned about real estate (??). I’m starting to read about some of my fellow pump-wearing PWDs who are finding that some sites have scar tissue after being injected many times. I’m interested in preserving potential sites as long as I can, so while a CGM might help me get real-time BG info, it’s not yet worth me destroying extra real estate. Maybe later, but not now.

In the final analysis, I am happy to have the pump. I am very happy that I have an employer that cares enough (I’m being honest here) to cover my pump, and pump supplies, and strips, and lancets, etc. It makes me sick to see people lose their benefits and think, “what if they or their family has to deal with this disease on their own?”. And I’m looking forward to the improvements that technological advances will bring to the market. Maybe the real estate issue won’t be such a big deal in the future.

And one final thought: This is just my blog… it’s very much a personal journal of my life with diabetes. Every pump and CGM decision is a personal one. You must decide for yourself. If you’re thinking about whether to take the plunge, get advice, not opinion. Get the facts, not a viewpoint. I wish you the best of luck, and the most of happiness.

By StephenS | Posted in Pumps | Also tagged , , | Comments (0)
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