Where have the past 9 months gone?

Since 2014 is nearly 3/4 over, and the days are getting shorter here in North America, I suddenly found myself considering the things I had wanted to accomplish this year. How have I done? Have I crossed enough off of my list? Am I a better person than I was on January 1?

This year started like a lot of others for me. I’m not a resolution-maker, but whenever I reach a milestone like the beginning of a new year, I try to think of some things I would like to do, or be a part of.

There have been many successes, and a few failures, but overall, it’s been great. Probably the first thing I could say is: I’ve learned a lot this year. I’ve learned how to be a better advocate. I’ve learned how to speak to people about my diabetes, and diabetes in general. I’ve learned a lot about the regulatory process, I’ve learned even more about how artificial pancreas technology works, and I’ve picked up valuable knowledge from the rest of the Diabetes Online Community. Lots of support and encouragement too.

I’ve continued to hand out medals to People With Diabetes who bravely train and achieve athletic goals that sometimes seemed unreachable. Every time I get a new request, I get so excited I want to do cartwheels and handsprings (but I don’t, because that would be a huge athletic fail). I get even more excited when I get to write about it and show off someone’s picture wearing the medal. As much as I get out of it, what I really hope is that someone sees a story and goes off on an athletic quest of their own. That is awesome and inspiring. There are not enough great adjectives to describe the feeling it gives me deep in my heart.

Still, I have my own athletic endeavor on the books. I’m still going to try to get in a short triathlon of some sort before the end of the year. October is a great month for it, but I’m not making any promises yet because frankly, I’m in horrible shape right now. But as people are fond of saying, it’s not always how fast you go… finishing and doing your best is a victory in itself. I really hope I can still get there.

What else have I left undone? I still want to organize a regular in-person diabetes meetup in my area. I think I got too busy to concentrate on it for a while, but I also can’t discount the worry that it will be a big bust and no one will show up. Oh well… screw it. I’m doing it anyway, because maybe people will show up, and if it turns out they won’t, at least I’ll know I tried.

I also can’t deny the feeling that I’m searching for the next thing I can do. Something… I don’t know what. I know that sounds incredibly vague, but I don’t have an idea what that is yet. I just know that when I’ve felt this way in the past, something has always popped up to grab my attention for a while. I just need to leave myself open to whatever is going to show itself over the next few months, because I really feel like something will. I’ll let you know if it finally hits me.

I’ve read about people going through amazing experiences this year, and I’ve read about people working through tough times, taking care of themselves the best they can for a while. Each of those scenarios involves victories, even though on the surface they don’t appear to be equal at all. So what about you? Are you feeling good about 2014 so far?

Part of a well-rounded portfolio of resources.

Okay, I’ve talked a couple of times about the U.S. Food and Drug Administration, and what they do in terms of testing and approving devices and products that help us manage diabetes. Today, I’d like to share a few more FDA resources with you. I hope you find them helpful.
Did you know the FDA has a web page devoted to schooling you on illegally sold diabetes treatments?
These are those “miracle cinnamon cure”-type items that pop up in our inboxes now and again. If you’re a well-informed Person With Diabetes, you can probably spot that kind of bunk from a mile away. But some people can’t. Including people who don’t live with diabetes, who don’t understand why we can’t all be cured like Halle Berry. Send those people a link to this page, which also has links to a great video helping to further define garbage products, and a Flickr page that actually shows you what some of these products look like. Case closed.
While I’m dropping F bombs… In addition to Flickr, the FDA has a presence on Facebook too.
Be the first on your block to friend the FDA! Once you do, you’ll get the latest updates as they are posted, and I suppose you’ll be able to directly leave comments of your own. More avenues of communication can only be good.
I’ve mentioned this before, but it’s worth mentioning again. MedWatch has been the FDA’s avenue for reporting adverse reactions to drugs or devices for over 20 years now. Today we can report issues by going directly to www.fda.gov/medwatch and completing on online form. Also, MedWatch is a source for safety information on drugs and devices that are a part of our everyday lives. Over the years, MedWatch has helped inform People With Diabetes about problems with blood glucose meters, the drugs Avandia and Actos, and insulin pump infusion sets. Those issues were reported by someone, and someone at the FDA listened. And then reported on it.
In addition to these sources, you can also follow and converse with the FDA directly on Twitter at @US_FDA. If you want to keep it old school, you can still call the FDA at 1-800-FDA-1088 (1-800-332-1088).
Maybe the FDA isn’t the first place you think of going to gather information on diabetes. But any well-rounded individual should have a portfolio of important sources of data that includes the U.S. Food and Drug Administration.

That’s the end of my public service announcement. Enjoy your Friday!

Another Champion Athlete with Diabetes: Congratulations Janie!

Today I bring you another inspiring example of People With Diabetes getting out and reaching their athletic goals:

Our Champion Athlete, Janie Moore, is in pink, second from the right

Our Champion Athlete, Janie Moore, is in pink, second from the right

Janie Moore celebrated 40 years with Type 1 Diabetes this past July. Back in April, she started training for a 4 mile marathon in Columbus, Ohio. Like many of us, she was worried about engaging in a prolonged exercise routine, fearing that something bad might happen. Then a friend challenged her with two questions: Why not? and What’s the worst thing that could happen to you?

In Janie’s words:

“After thinking about my answers to those two questions I let down my guard and started training. Wow! If I’d only known then what I know now! That by getting up and moving my body feels better, my insulin works better and emotionally I am so much stronger!”

Guess what? This past weekend, Janie completed the Ohio State 4 miler marathon! I’m going to let Janie tell the story about her day:

“Sunday, Sept. 21, 2014 started early for me. I woke up early so I could eat a healthy breakfast before the 1 1/2 hr. drive to Columbus, Ohio to participate in the Ohio State 4 miler marathon. After working hard for the last 4 months doing walking training, needing to rethink my meal plans, and adjusting my insulin pump settings, only to figure out I was stable/healthy enough to not even wear my pump during exercising I felt like I had already run the race. But, on June 1, 2014 I had set a goal to slowly train and gain 1 mile per month until I was able to finish a 4 mile marathon at the end of September. This may seem like a short distance to some but for me, a person who HATES to exercise, it felt like like I was climbing a mountain!

As I slowly added miles on my elliptical I often felt discouraged. My husband, sons and friends kept encouraging me to continue which was a big help. I’ve often struggled with keeping to myself,not letting others know how I’m feeling. Something else I learned during this experience was to open up and admit my struggles to others. They can’t read our minds but if we tell them we’re having trouble they are there to help and encourage us and it does make a big difference.
Editor’s note: I couldn’t have said it better myself. So great to have cheerleaders!

Back to race day! We arrived early so that I had plenty of time to check my blood sugar, strap on my handy supply waist belt and make any adjustments needed before the start. I met up with several friends then waited…and waited. There were 12,000 people signed up to race. I was classified a walker so of course I was at the back of the line. I finally reached the starting gate 25 minutes after the start whistle. The wind was blowing and it was overcast. A perfect day for a race, all my racing friends kept telling me. During training I had learned that mile 2 was where I needed to recheck my blood sugar to make sure everything was going smoothly. My blood sugar was 108 so I knew I needed a few carbs to keep me up enough to finish without a low. After digging into my trusty supply belt I found a granola bar to eat. On I went eating and walking. I had strategically asked my family to meet me around the 2 1/2- 3 mile mark just in case my 2 mile blood sugar check was running low. Since I was only at 108 I decided to grab a regular 7Up from them and take a couple of swigs before going any further. Mistake! Carbonated pop is not a good choice when you are doing a marathon, trust me. So, I threw the pop in the first trash can I found and pulled out a bottle of instant carb booster from my supply bag. I had put them in there during training but felt I should only use them during an emergency. Well, I thought, a couple of swigs would only help. Mind you, I’m doing all thinking and adjusting as I’m continuing to walk because my pace was going good and I now wanted to best my training time. I finally made it back to the stadium. As I made my way to the famous tunnel I started to get goosebumps. They only allow certain people to go through that tunnel and onto the Ohio State football field and today, I was one of them! I walked down the shaded tunnel onto the sunlit field with tears in my eyes. I had almost reached my goal of finishing on the 50 yard line. I had walked the whole race but according to my sports fanatic son, I was not allowed to step foot into the stadium without running. So, even though my legs were cramping and felt like rubber I started to jog up the sideline of the field. Ok, I must confess, I only made it half way before I had to return to walking but once I turned the corner and started walking up to the 1 yard line I jogged my way to the 50 to finish my very first marathon. Fourteen minutes faster than my training times!

Janie is in pink right there at the finish line.  Yay!

Janie is in pink right there at the finish line. Yay!

After the race I made my way back out of the stadium to collect my medal, find some water, eat a banana and check my blood sugar again. It was 128 by the way. Exercising is a great way to keep your blood sugars down! I met up with my family and friends and we celebrated. I gave my sister, who has overcome many obstacles herself, the honor of presenting me with my Champion Athlete with Diabetes medal. It was a great ending to a great day.

Janie is second from the right, wearing both her medal for finishing the race and her Champion Athletes With Diabetes medal!

Janie is second from the right, wearing both her medal for finishing the race and her Champion Athletes With Diabetes medal!

I’m so proud of myself for the accomplishments I’ve made over the last 4 months. All the days I forced myself to get out of my chair and onto the elliptical or walk on the track were worth it! I still hate to workout but I have learned that my body needs me to exercise in order for it to work its best. And best of all, I feel like I’m in control of my Diabetes instead of it controlling me!”

Congratulations Janie. I’m so glad you made it through your training and reached that goal that meant so much to you. I hope this is just the beginning of a lifetime of exciting athletic endeavors.
C’mon now… It’s your turn to join the club. We’ve handed out something around 15 medals to athletes like Janie in the past ten months. We’ve got two more medals that we’ve sent out to athletes I haven’t even told you about yet. And we’ve got plenty more left. I’ve said it before: Be an inspiration. Not just for yourself or your loved ones. Do it for the people you haven’t met yet, who will identify with you and be inspired too. Because they will.

To find out more and start the process of minting your medal as a Champion Athlete With Diabetes, click here or on the medal photo in the top left corner of this page.

September DSMA Blog Carnival: Can I get a copy of those notes?

This month’s DSMA Blog Carnival topic goes back to the August 20th Twitter chat, asking a question that I have a difficult time answering:
Do you request a copy of your medical notes? If so, how often? If not, why?
I hate to show my ridiculous ignorance on this subject, but the answer is no.

I have never asked for a copy of my medical notes. Ever. I’ve asked for a copy of prescriptions. My endocrinologist sends them in directly to my prescription provider, so if I didn’t ask for a copy, I wouldn’t have a record of what I’ve been prescribed.

But other than the prescriptions, I’ve pretty much let my doctor, nurse practitioner, etc. take the notes and keep them to themselves. To be honest, I’ve never thought about asking for the notes before. It makes sense. I’d like to know what my file looks like. I’d like to know if they make a mistake in a diagnosis or a therapy or a prescription. However, right now, my only reason for asking for a copy of my medical notes is to satisfy my own curiosity.

But the question does make me think of something that’s been at the forefront of my mind lately. I need to start putting together a file full of notes of my own.

I got this idea from a co-worker, who showed me the tablet he uses on a daily basis. On it, he has his elderly mother’s critical medical information. Information like doctor names, addresses, and phone numbers. All of her doctors. If her general practitioner tells her she needs to make an appointment with her podiatrist, he just pulls up the information from the tablet and makes the call right away. He’s also got data on prescriptions, their strength, and how often they need to be taken. This helps when a doctor prescribes one thing, then another doctor prescribes something else that might interact badly with what she’s already taking. If she suddenly finds herself in the emergency room, he has all of her information in one easy-to-read place.

I realize something like this isn’t always well received by medical professionals, but I also know that all of my data is in separate places right now. And having all of my information in one place can’t hurt. I also know that if I were to find myself in a situation where I couldn’t speak for myself, my spouse would want that information at her fingertips. There’s the chance that it could get hacked and stolen and used for nefarious purposes. But I think the benefits of having such a cache of information on an easily-accessible platform would outweigh any potential risks.

So there you have it… A very meek “No” to our question this month. But, as always, the Blog Carnival topic has me thinking about how to better manage my diabetes. And that can only yield positive results in the future.

This post is my September entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/09/september-dsma-blog-carnival-4/

Talking with the FDA.

This post is also published on the Diabetes Advocates website.
Take the Diabetes Advocacy Survey, join us, and become a Diabetes Advocate right now. This post will wait until you come back.

When I first discovered the group of bloggers, reporters, healthcare professionals, and patient advocates that make up the Diabetes Online Community, I remember feeling really good about the support and encouragement I was suddenly finding through the internet.

I did not know much about the U.S. Food and Drug Administration, other than knowing that they had to approve every new drug or device used to help me survive with diabetes. Then I started reading a lot from people who felt that the FDA was holding back progress on these things. How the FDA never took the patient point of view into consideration. How they were a bottleneck, holding back advancement toward better outcomes for us.

Well, I’m not sure if that was entirely true then. But I do know now that it is not true today.

Last year, Strip Safely helped lead a campaign to get more people to comment on FDA draft guidance for glucose meters. We were all encouraged to post comments letting the FDA know how important greater accuracy and post-market inspection is when considering the trustworthiness of new glucose meters and test strips.

We were able to post those comments directly to the FDA because they made it possible to do so, easily, online. As a result of just that one push to comment, the FDA received six hundred comments on this one issue. That’s about six or seven times the number of comments they generally receive on draft guidance. Collectively, and as individuals, the diabetes community spoke and the FDA listened. But that’s not all.

A few weeks ago, I received an e-mail from the Food and Drug Administration about comments I left regarding glucose meters in a point-of-care setting (hospitals, doctor’s offices, etc.). They wanted to speak to me about what I had written them. So we scheduled a time, and I spoke by telephone with Katherine Serrano, Deputy Director of the FDA’s Division of Chemistry and Toxicology Devices.

We talked about some of the things I had written, and she had a few questions for me. The thought of that seems a little intimidating at first. But rather than just a talk between a Deputy Director at FDA and a guy from Baltimore, it was really a conversation between two people discussing an important topic. I tried to give her my passionate best on the subject, and she remained engaged, asking follow-up questions and allowing me to consider her questions carefully before answering, and even letting me e-mail her later with additional feedback. This does not seem like the actions of a group that does not care what we think.

I don’t know how seriously Ms. Serrano or the FDA considers my views on the subject. But there’s no denying the fact that I was given not one, but two chances to deliver a personal plea for the best possible device guidance on point-of-care glucose monitoring. And I was not going to pass on either one of those opportunities.

Because new innovations often take years to get into the hands of the people who need them most, it’s easy to feel like your voice would get lost among the masses, even when you do take the time to respond to something. But what’s the alternative? You, or people you love, are the patients, the ones most affected by any changes to the status quo. The one way to be sure your concerns are part of the public record is to make them public. The one way to help all people with diabetes get the better outcomes they deserve is to insert your voice into the conversation. And if you’re asked for additional perspective, be sure to speak with the passionate desire for the absolute best results that comes with the perspective that only you possess.

We’re counting on you. Allow yourself to be the voice that makes the difference.


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