Tag: rant

There will be no diabetes cure in my life time

WHY!??

As I read this article by Riva Greenberg in the Huffington Post, I became outraged. That state of affairs in the fundamental technology that I use to manage my diabetes is appalling.

So while manufacturers keep adding bells and whistles to meters, and we’re on the launchpad for an artificial pancreas — where accuracy will be even more critical — why don’t I have a meter that gives me an accurate reading of my blood sugar?

Yes! WHY!!!!!!

I didn’t attend the 72nd American Diabetes Association scientific session, but I know several people from the DOC who did. I was able to catch up and talk to a few of them at a meetup in Love park on Sunday before the sessions ended. I had a moment to speak to Kelly Rawlings Editorial Director or Diabetes Forecast about a rant blog posting that I had been working on but was too afraid to post. She suggested I post it and voice my frustrations. I'm waiting for the right time. Here it is.

There will be no diabetes cure in my life time

I have meant to write this blog post for quite some time. I’ve held off writing it because I didn’t have my thoughts organised. At least that’s what I told myself. I think I’ve held off writing it because the tone is negative and may be offensive to some.

I had type one (LADA) diabetes about six years ago. That’s about as long as my nephew’s been alive and half my daughter's age. Not a long time but still too long. During the time I have had diabetes, I’ve read articles — some historical and some more recent — suggesting that a cure was in the future. I remember reading similar articles when I was diagnosed. The future is further than six years.

I am sure that there are people alive today who have heard something similar to their entire life. For some people, the future has been 20 years, for others 40 years. So the future is starting to look like maybe something beyond 100 years.

In the meantime, I’m being asked to help find the cure by donating to or fundraising for organisations who fund research towards a cure or directly to organisations working on a cure. Any day now, “We’ll have a cure”. Shut up! I’m tired of hearing it.

I’m not one of those who believe the big pharma companies and doctors are involved in some conspiracy to suppress research toward a cure because it would affect their business. I don’t think that if we raised more money to fund research — why do Americans believe that throwing more money at a problem produces solutions? — we’d have a cure sooner.

No. I think we don’t have a cure today because the problem is difficult. The disease is complicated. I wish someone with influence would just come out and say the truth (my truth?); the truth is we have a long way to go before there is a cure. This endless cycle of “hope mongering” is exhausting.

I’m tired of year after year of fundraising with no f**king end in sight. Waltz out the “cute doe-eyed kids” to tug at heartstrings (not mine) and send the teens and pre-teens off to talk to congress. Get some politicians to call press releases and make resolutions. Let’s get the hype machine going. Yahoo!!!

Look I don’t give a shit. Is the four-year-old with type 1 diabetes going to send me a note of encouragement on twitter or Facebook or TuDiabetes.org just when I need one? Is the teenager with Type 1 diabetes going to hang out with me at the local bar over a pint and listen while I rant - like I’m doing now - about how much I hate the three, four, five (six!!!) times a day routine of swab-test-inject? No! So stop telling me about them.

I know this tirade sounds negative. It is. That’s the mental space I’m in the right with this disease. I don’t want to raise money towards a better, way in the distance future. I’ll leave that to the people with kids who have diabetes. This year, I’m going to donate my money to organisations that make a difference in my life today.

That’s my decision right now. In the meantime, I’m off to have another beer and read about the new-fangled gadgets for people with diabetes that will be available “any day now”.

Newark / @element14 and my @Raspberry_Pi

Newark / element14 Customer Service SUCK!

Interesting challgneing I have getting my Raspberry Pi which I ordered from +Newark / element14 on March 12th, 2012.

I received an email update in April advising me that they had remove the promised ship date of May and that I find out more at their web site.

I read that and I noted that while no firm ship dates were promised (my order is still listed as back ordered) they did make this one statement.

By early next week, all 110,000 customers who have ordered with element14 - wherever you are in the world - will receive a confirmed delivery date. As previously communicated, this will be no later than the end of June for those who ordered before April 18th.

So it’s June and I still have no confirmed ship date so I contacted customer service via the web site and a rep responded that he would contact me via email.

This morning I received an email from customer service with one line:

You should expect your Raspberry PI early July.

Looking at a Gregorian calendar it occurs to me that July is definitely the month after June.

So I call customer service for a little chat. I wanted to understand why the posting from April 27th - which has never been updated - promises a June delivery but the email suggests otherwise.

After about fifteen minutes both the customer service rep and I have concluded that Newark / element14 has no idea when I might receive product. The rep was quite flippant about the whole affair but I maintained my patience. I quietly ended the call with the agreement that I would be publicly stating what occurred on Facebook, on Google+ and on Twitter.

Believe it or not, for me, being told that they have no firm ship date is better than being promised one and having the promise broken.

If you ordered a Raspberry Pi from Newark / element14 don’t expect one anytime soon. In fact, I predict I won’t get one at all. I plan on forgetting it even exists. Perhaps I’ll get it in time for my birthday in November.