ADA Walk in Allentown PA

Late last week my wife and I had to make the decision on whether or not we were going to evacuate our home in south Florida or stick out the storm. When we made our decision the path of the hurricane was not looking good. We knew that we wouldn’t be directly hit, but felt that we would get enough of the storm that it would make us lose power. And we did not want to lose power with an 18 month old.

So, we decided that we were going to evacuate. We thought about just making the short drive to Orlando for the weekend, but they were bracing for the storm themselves, so we had to go even further west or further north, so of course, we chose north since it’s where I’m from.

We made the drive north to PA and made it by Thursday morning. I was told by my mom that my brother was going to a diabetes walk on Saturday for my niece. I found out that the local ADA Step Out walk was going to be taking place at Coca-Cola Stadium in Allentown, PA, the home of the Lehigh Valley Iron Pigs (Phillies Triple A Affiliate).

This was the first diabetes walk that I was attending that I wasn’t the only person with diabetes that was walking. Typically, it is just me and the walk is about myself. This time, I was sharing the honor with my niece, but was mainly about her. I’ve done my share of walks and I think that they can be a lot of fun for kids, especially when they see other kids running around with an insulin pump or CGM.

kendall-simmons-chris-stockerSpeaking at the event was Kendall Simmons, who has partnered with Novo Nordisk to share his story. I’ve met Kendall in the past and have also interviewed the Super Bowl champion. When I met him again on Saturday, I wanted to check out the Super Bowl rings again. Primarily because I am an Eagles fan and I never know when or if I will ever see one.

During the walk there were a bunch of signs along the path that had a red hand and a picture of someone with diabetes. While we were walking through, my niece kept saying everyone’s name and looking at the picture and then bam…. “Hey, that one is me!”

My sister-in-law was able to get my niece’s picture and name and a special note on one of the signs. She was so happy and excited to see her face there. As people walked by they were cheering and clapping for her because of her excited look.

This was one of those good diabetes moments. Seeing someone so excited to see their picture, even though it’s diabetes related, it makes it exciting and not just the constant negative vibe that diabetes gives out.

How to Take the Online to the Offline

Last week during DSMA a question was asked about how we can do more to create more offline efforts and offline communications.  My biggest efforts for the offline world are communicating with JDRF and ADA local chapters and trying to get them to communicate together and work together for a larger goal of getting people with diabetes the information that they need.  One piece of that information being access to the DOC.  How do we go about this?  It sounds all fun and dandy to have the JDRF tell every single person they talk to about the DOC, but how do we do it?

 

Unfortunately, these local chapters have national “rules” that they have to follow and they can’t just add something into their newsletter that is “endorsing” something unless they have approval.  So the first part that I would recommend is to reach out and just simply explain what it is that you are trying to accomplish and see how they react.  If they don’t respond via e-mail or letter or phone call, then try again.  These offices are under-resourced and sometimes it may take a while to get back to something because they just don’t have the manpower to get things done in a timely manner (which is why volunteers are such a huge deal to them).  If after a few attempts, they are not responsive then you have to take it to the next level.

Call them out…… politely….. on Twitter or Facebook and just ask them to participate themselves a few times in DSMA or just comment on some blog posts and lurk around on Twitter.  Once they see for themselves how amazing this community is, then they will be more responsive to your ideas.  Do not make enemies with them, they are some of the few friends that you have on your side, if you work it the right way.  Be friendly and be willing to work with them.  See if there are events that you can volunteer at and be able to speak with some of the attendees.  This is a way to get your foot in the door and help build a larger relationship.

Once you have established relationships with both, it is now time to try and get the parties together and start having them communicate a little bit.  I know that this is like asking a Democrat and Republican to agree with each other during an election year, but at the end of the day there is a common goal, to what is best for the majority.  The majority in this situation is the people with diabetes that are directly affected by the decisions that these organizations make.

The best advice that I can give is to not give up.  Do not give up on the local chapters.  That is where you are going to make the biggest impact.  National change comes from local outrage.  Do not settle for something that doesn’t work.  Strive for the best.  You must be willing compromise however, because not everything is going to turn out exactly the way that you want, but keep at it!

Another thing that you can do is constantly remind your endo or any other HCP about the DOC and how beneficial it is.  Doctors usually care about their patients enough that they want them to have access to support.  I know there are some legal issues that may arise with this having to do with a doctor referring a patient somewhere and then something going wrong.  However, it doesn’t hurt to try.  I am lucky enough to have an endo that is type 1 diabetic myself, so I am excited for the next time that I see her to try and get her involved.  Unfortunately, due to scheduling conflicts I haven’t seen my doctor in almost 6-7 months and I won’t see her again until November because of how booked the both of us are.  Not good, I know it sucks, but that’s for another blog post.

Tonight’s Main Event Fight – Diabetes vs Diabetes

Well, as I spoke about in yesterday’s post about missing the Roche social media summit, it sucked!  Luckily, this was a DOC event so of course our fellow friends were there tweeting everything good going on.  There seems to be a lot that was discussed and hopefully it will make an influence on decision makers minds and that things will get done.

The tweet that stuck out the most to me was from @saraknic.  I don’t think it was a tweet, and I don’t know how it was said or who it was said to, but Manny put the quote on Twitter, “No other disease fights with itself.”  This struck me big time, because it is something that I have been fighting for, to get everyone on the same page with the same goals.

Here is a perfect example, my girlfriend Amanda wanted to buy a bracelet with a charm on it, or a colored bracelet, not the rubber ones, but a regular one, and she was going to buy a red one because the is the “color for diabetes.”  Well, red is what the ADA uses, but IDF uses blue.  So which one is it?  Why is it even a question?  When you see the color pink, what is the very first thing you think of?  Exactly.  You automatically think about breast cancer.

Well, I don’t want to speak too much about things that went on at the event, because I really don’t know and I’ll be waiting to hear from all the people that were there.

But thank you Sara for bringing up such a great point!

Blood Sugars Stayed High All Sunday

As I mentioned in yesterday’s blog, Sunday was just very blah.  Even after I posted the blog, it didn’t get much better.  My blood sugar hit a high of 465, right before I was to go to dinner.  I took almost a 17 unit correction and knew I wouldn’t be eating for about another 30-45 minutes.  Everybody ordered pizza, but I knew that I obviously couldn’t eat that  with a high blood sugar, so I opted out for a Greek salad.  Luckily, the waitress forgot to put my order in and my salad came out 10 minutes after everybody else was eating.  This gave my sugar more time to come down, which it came down to 285 before I ate.  It just felt like crap sitting there not being able to eat the pizza because my sugar was so high.  But this is that’s what goes on sometimes when you’re living a life with diabetes.High Blood Sugar

The salad was good for my diet however, so that was one good thing.  One of the in-laws had asked me, why I was eating salad, was it better for my diabetic diet?  I said, well I’m just on a general diet, nothing special because I am diabetic, I have insulin to take if I eat bad things.  After having a short conversation, I said why don’t you read my diabetes blog on a daily basis, because you can learn a lot about diabetes from it, and from reading one of the other diabetes blogs.  Hopefully you all see your reader base go up by one 🙂

Because of the high blood sugars yesterday, I decided to take a break from my BBQ sauce that I have fell in love with over the past several weeks.  I figured that it would be a good idea to keep that high fructose corn syrup out of my diet for a while.  Somebody sent me an e-mail after I wrote that post about their sauce being the only one approved by the ADA, I’d love to try it, if you are out there listening.

Well it is a Monday, so I should probably start working on some projects that I probably slacked off Golf Courseon over the weekend.  I’d so much rather be doing this again (see picture on left, Par 5, second shot)

Is Diabetes a Disability?

Here’s a question for you: Is diabetes a disability?  This question came up while I was reading an article in the October issue of Diabetes Forecast.  There is an article titled, “Cracking the Case.”  Long story short, Jeff Kapche was denied a position at the FBI because of his diabetes.  He filed suit against them stating that they didn’t hire him because of his diabetes.  The FBI said that his diabetes is not a disability because he manages his diabetes well.  The court favored Kapche.  The case is still is heading back to the Federal Court of Appeals for another review.

There is no easy answer to this question, it may seem like there is, but there isn’t.  Let’s look at it from all sides.

Diabetes IS a disability

When you have diabetes(type 1) there are certain things that you must do in order to live a healthy life.  You must check your blood sugar, take insulin whether it is from an insulin pump or syringe, be able to have access to glucose in case of an emergency and many more things that we don’t have to get into at this time.  This can definitely hinder your processes of doing normal day to day or daily job tasks.  If you are working an extremely physical job then your blood sugar is more likely to drop faster, so this is where diabetes can be considered a disability.

Diabetes IS NOT a Disability

Even with all of the things that you need to do in order to properly manage your diabetes, they do not have to hinder your daily life or your day to day tasks.  If you are doing the things that you need to be doing, then you can control your diabetes which does not allow it to become a disability.  Whether you are wearing an insulin pump or taking multiple day injections (MDI), you can control your levels.

My 2 Cents

Here’s my 2 cents.  Diabetes is in no way a disability.  I live a normal life, I just so happen to be diabetic.  In the 6 years that I have had diabetes there has not been one single time that I have had to say, “no I can’t do that because I have diabetes.”  I eat ice cream cake for birthdays, I ride roller coasters that go upside down(Manta @SeaWorld)Manta_SeaWorld while wearing a pump hooked to my hip, I test my blood sugar at the table, at the desk, in the bathroom, at work, at the dinner table, I do everything someone without diabetes does, but more!  I don’t see diabetes in any way being a disability.  With proper management, you can control it.  A disability to me is something that you can’t control.

I think using diabetes as a disability is a scape goat for a lawsuit. Sure, there may be a reason that you don’t get a job because of diabetes, but that is a discrimination, primarily based upon ignorance and the cost of your health to the company hiring you.  So, if you are going to file a suit against somebody for discriminating against your diabetes it should be because you are defending that it isn’t a disability and that you are able to do the job just the same as someone without diabetes.  Instead, the guy in this article is fighting the FBI and saying that he was denied the job because he DOES have a disability and the FBI is claiming that his diabetes is not a disability.

This irritates me.  To think that the ADA is doing a 2 1/2 page article in their magazine talking about how diabetes is a disability.  What kind of negative thinking is that?  Not the kind that I want to think about.  How about they write articles about how it’s not a disability, but people’s pure ignorance to think that we can’t do something just because we have diabetes.  I don’t know.  But what I do know is that I’m not going to have an organization that is supposed to be furthering advocacy for the disease I live with, start to take steps backwards.

If you want to accept diabetes as a disability, then be my guest.  That’s your life decision.  But I’m not going to let this damn thing hold me down!

I would love to hear ya’ll feedback.

Top 3 Things Diabetes Related That Make Me Mad

Recently I started to think about some of the things related to diabetes that really make me mad.  Diabetes in general doesn’t because I have learned to live with it, deal with it and manage it.  It is usually other people that make me mad when it comes to diabetes.  Let’s start with the top 3 things, in no particular order.

Diabetic vs Person with Diabetes

I personally don’t understand all of the hype around this.  If you want to call me a person with diabetes, go ahead.  You want to call me diabetic, which I prefer, then go ahead.  I don’t really care what you call me.  Diabetic is just the term that is used to call somebody who has diabetes.  Why all of a sudden is it such a bad thing?  I think it is a good thing when someone calls me a diabetic, because I have diabetes, so therefore I am diabetic.  I guess if I hear one very good logical reasoning of the PWD thing then I will go with it.  Like I said, I have no problem if that is what you want to be called, I will call you that.  Quite honestly, I would rather call you by your first name and not diabetic or person with diabetes at all.

Supply Switching

Who the hell are you (fill in the blank with your supply company) to tell me what meter, strips, lancets or pen needles I want to use?  Do you think that I care about your bottom line figures and that you make more money off of the generic lancets than the brand name.  I don’t really care about the 200% profit you are making, I care that the lancets that I am using are not damaging and bruising my fingers constantly.  I want a pen needle that is going to penetrate my skin and not hurt when it goes in because its not sharp enough.  A few years ago when I was still using an old supplier, will not mention names, they continued to send me these cheap generic lancets when I wanted the One Touch ones.  They kept sending them every 90 days and I would call and tell them to stop, but they wouldn’t let me return them, I still had to pay for them.  They then went far enough to tell me that the One Touch ones are no longer made, they have been discontinued.  So when I was walking through Wal-Mart one day I saw them there and then went off on the company.  I called 4 times a day every day for like 2 straight weeks to make sure I got every customer service rep there.

Not the same goal in mind

There are a lot of non-profits, organizations, blogs, communities and they do not know how to work together.  What do we all want?  A cure, right?  Of course there are some other things that would be great along the way, but ultimately it is about finding a cure, spreading awarenss and giving people an arena to share and talk about, especially in the online world.  Then why can’t we just all work together and not look at other people in the diabetes world as “competitors”.  I’m not saying that everyone does that, I’m speaking of the minority on this one, but it just irritates the hell out of me.

Those are the 3 main things that just make me mad.

What are some others that tick you the wrong way?

JDRF vs ADA – What are your thoughts?

First off, if I have anymore computer problems I am going to flip out and throw this thing out the window.  I was getting some sort of script errors and I don’t know what the heck was going on, so I was pretty much computer-less yesterday.  Anyway on a better note, I have my cup of coffee next to me, making Amanda some chocolate chip pancakes as I speak.  Today is going to be a long day, but what day isn’t anymore.  Long day at the office, long night of football, then the gym, then dinner, then work at home and maybe watch some football if I’m lucky.  I wanted to do this post yesterday, but obviously I couldn’t so here I go.  The JDRF vs ADA, what are your thoughts?  Here are mine (if you care)

I mentioned briefly the other day about how most people have their favorite charity or think that theirs is the best so they want the money for theirs because that cause is more important to them.  In my mind there are two large diabetes non-profits, obviously I am talking about the ADA and JDRF.  Everybody may have their own opinions on these 2 organizations, but overall they are good.  If I were able to only donate to one of them and not both, which I do at this time, this is how I break it down.

I see the ADA and JDRF having two different approaches.  ADA being about advocacy and JDRF being bout research.  So there are two different train of thoughts for me here.  I believe that the ADA is doing a decent job with advocacy in Washington.  Could they be doing better, of course!  So when I donate a dollar to them, I am donating a dollar thinking, “Ok, they aren’t going to help me find a cure, so they are going to help me live a better life with demanding certain rights and insurance priveledges for me”  It is almost as if it is accepted to not find a cure and just deal with the fact that you have diabetes, so let them fight for you and be your voice in Washington.

According to the American Diabetes Association, 24% of funds go to research and 23% goes towards advocacy, however, 21% goes to “fundraising.”  What exactly does that mean?  That $0.21 of my $1.00 goes towards creating a new fundraiser to gain another $1.00 from me?  So I have now donated $2.00 and only $0.48 cents has gone to research and $0.46 to advocacy, but meanwhile $0.42 cents goes to fundraising.  I am not arguing with where the money is being spent because like I said, I still donate to the ADA because I think the things they do are excellent, especially the amount of money they spend on information because the more information the better.  This is just the way my mind thinks of describing the two.

Next up, we have JDRF.  JDRF is my non-profit of choice.  If I had to choose any organization to give money to, it would be them.  The way that I view them is that they are here for one thing and only thing only, to find us a cure and get rid of this nasty thing we all live with.  They obviously dabble in advocacy as well, but their #1 goal is research and a cure, and so is mine.  I want to find something so any chances that my first, second born child will have diabetes will be eliminated.  According to JDRF, approximately 85% of every dollar spent is used towards research.  I’m all about doing it for the kids.

So when I compare the two I see that it only takes me $1.00 spent to get $0.85 worth of research with JDRF.  On the other hand it is going to take me $4.00 spent with ADA to get that same amount of research funded.  This is why I have come to view these two organizations in the way that I do.  I know there are skeptics out there that believe we will not have a cure so we may as well have somebody fighting for us to give us everything we possibly need.  And then there are positive thinkers that just know there will be a cure and do everything in their power to get to that cure, and that’s the boat I am in.  Not to say that one side is better then the other.  In fact, I also think that they should both work together a little closer.

For example, every year for the ADA walk their is a JDRF event the same morning.  Every year at the JDRF walk, there is an ADA event at the same time.  What are your thoughts, do you agree, disagree, am I just crazy?  I will continue to donate to both because I think they are both extremely important.  I know putting up ads and links on your blog is somewhat frowned upon in the dblog world, however if you have noticed that any ad that is on my site, I donate that money to JDRF.  I think this is a great way to easily donate funds to a non-profit of your choice.

Well, I must get going, like I said it is going to be a long day in this life of a diabetic.  So have a great day ya’ll