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!

Bookmark It

Hide Sites

No related posts.

Related posts brought to you by Yet Another Related Posts Plugin.

All this press about all these new technologies and studies and companies joining up with non-profits to do this and to do that, and blah blah blah.  At first when I read the post by Amy from Diabetes Mine about JDRF and BD joining forces, it instantly just reminded me of the post I just had last week about why there will never be a cure! Next, it made me think, well what exactly is it that I want from an insulin pump or what do I want to have in order to manage my diabetes.  This is not like a Jetson’s post.  I am trying to keep this stuff logical and something that can happen in the near future.

Easy to Use

The very first thing that I want is for the device to be very easy to use.  Now that all pumps have built in carb counting and insulin suggestions, it makes life so much easier.  I love that they calculate how much active insulin there is.  Not too many buttons, just 2 or 3 at max to do what I need to do.

Convenient

What I mean by this is that I want to be able to use my iPhone to link with my pump.  My iPhone is my life, literally.  I work from it, I communicate with family, Amanda has one also so we have apps that easily keep us in touch and on the same page with each others calendars etc.  I want to be able to just pull out my phone at the dinner table or at a restaurant and hit a few buttons and then bam, there goes the insulin.  I would like to also just have to use my phone as a meter, not just anyphone, because I know there are phones out there, but the iPhone.

Tubeless

I still use a Medtronic Paradigm, so I have never even used the tubeless / wireless OmniPod yet.  The number reason that I don’t is because I use about 120 some units of insulin a day.  That only holds 200, so I would be changing the pod every day and a half.  I would a pod to be able to carry, let’s say, 600 units of insulin.  I basically only want to change reservoirs and infusion sets, or pods just once a week.  It’s less work I have to do and less garbage and sharps containers I go through.  Charge the same price, it doesn’t matter.

CGM Built-In

I want the CGM and the pod or infusion set to the be the same insertion.  I don’t want to have to wear two separate things.  Very clear on that.

Well, that is what I want in my insulin pump.  I know some of these things exist, but not all in the same pump.  So, when JDRF is giving their millions to these companies, I hope they have spoken with diabetics themselves on what we want, not just what they want to create and think will make life easier.

What do you want?

Bookmark It

Hide Sites

Related posts:

1. Busy Day Today, Interview with JDRF Tomorrow Today was so busy that I didn’t even have...
2. JDRF vs ADA – What are your thoughts? First off, if I have anymore computer problems I...
3. Diabetes Inventory Day – Time to Count Today it is diabetes inventory day.  How often do...

Related posts brought to you by Yet Another Related Posts Plugin.

This is a conversation that I had today at lunched.  Now, some of you may agree and some of you will disagree, strongly.  The discussion was brought up about the $100 million Obama is going to send to the care of Haiti.  The question was posed to me, “Doesn’t that piss you off that they send $100 million to another country, and that money could be spent on diabetes research?”  Now, I didn’t know how to answer this question at first.  Of course I don’t want to see anybody have to suffer, but I also see the side that my tax money could go to something like research instead.  So, my answer was, “well, there will never be a cure.”

And then the conversation went on with my explaining why, which I will here as well.  And it can be summed it very easily.  You think we are in a recession now?  Find a cure to diabetes and see what kind of recession we hit.  How would scientists that spent their whole life searching for a cure and doing studies about diabetes get a paycheck if there was a cure?  How would they pay their bills.  How would the stores they shop at be affected.  How would the people that work for diabetes companies and products make a living?  It would hit our economy harder than just about anything.

Do I hope for a cure, of course!  Do I still donate funds and do volunteer work, of course.  But realistically, no, I don’t think it is likely.  There will be advancements in the management of it and there will be tools that may make it easier to live with diabetes and maybe even ways to rid yourself of all complications, but never a cure.  Companies can still make money off of advancements, but not off of a cure.

But like I said before, this thought will not stop me from doing what I can to help find one.

Do any of you share this same feeling?

Bookmark It

Hide Sites

Related posts:

1. JDRF vs ADA – What are your thoughts? First off, if I have anymore computer problems I...
2. Hey JDRF & BD – This is What I Want in an Insulin Pump All this press about all these new technologies and...
3. Vacation Over Means Back to Blogging What is this thing called a WordPress dashboard that...

Related posts brought to you by Yet Another Related Posts Plugin.

First weekend with the new basal rates and carb to insulin ratio, not bad.  I didn’t see much of a difference, but the after meal highs have come down a little.  There were still highs, but they were about 170-180 insteado f the 230-240 I was having.  It could have also been the food that I ate this weekend because I must admit, it wasn’t the best choices.  Friday night I went to Chile’s.  Saturday night was food court chinese food (my favorite food in the world)  Sunday was a chicken sandwich at the bar watching the Eagles.

This weekend also didn’t really have any stress involved at all.  Saturday Virginia Tech took care of business easily, and so did the Eagles yesterday.  Nothing to stress about sports wise.  My Panthers got beat, but oh well, what are you going to do.  Anyway, onto other things.  I am working on finishing up an interview with my local JDRF person.  She pretty much does everything for the JDRF in this area, so I’ll be posting that later this week.  I have some plans that I’ve been putting together to work with the local office of JDRF and do some more volunteering and working to get more donations.  Hopefully it will all work out, mainly when I actually have some time to.

Seeing all this pink in the NFL again this weekend is pissing me off, because I know that there is not going to be a single thing done for diabetes month.  And there are a few NFL players with diabetes, one of them being a Pro Bowler (Cutler).  Diabetes gets no respect.  Diabetes is the Rodney Dangerfield of comedians, no respect I tell ya.  But all I can do is use my resources that I have to try and get a voice out there and work with you all that have voices as well so maybe one day somebody will hear us.

Well, it’s Monday and Monday’s are always my shortest posts, so I hope you all have an amazing day.

Bookmark It

Hide Sites

Related posts:

1. 5 Reasons Why Watching Sports Affects Your Blood Sugar I wasn’t able to get a post up yesterday...
2. A Relaxing Weekend with Diabetes This weekend was filled with a lot of excitement,...
3. JDRF Walk in April Next month is my local JDRF walk in Boca...

Related posts brought to you by Yet Another Related Posts Plugin.

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

Bookmark It

Hide Sites

No related posts.

Related posts brought to you by Yet Another Related Posts Plugin.