» 2010 » August Strangely Diabetic

Meeting Some Other Adult T1′s Here in Kansas City

August 30, 2010 — Scott

Last Wednesday evening I had the pleasure of attending my first JDRF KC AT1 (Adult Type 1) get together. All in all, it was a great experience. Met some great folks involved with the JDRF here in Kansas City. This was more of a social gathering at a local restaurant where the JDRF ordered a couple of pizzas and everyone paid for their own adult beverages of choice.

Most of the “official” business involved fund-raising activities here in KC, especially the upcoming walk in October. A number of suggestions were made on how individual could potentially raise funds at their place of work; such as a Jeans Day. Donate $5 and you can wear jeans on one particular day.

For the last 30-odd years, I’ve always felt pretty left out by the JDRF and I think there are many other T1′s that feel the same way; as Invisible Sufferers of an Invisible Disease. And I’m sure that has given me a jaded view of things.

A few things have started to change my opinion though. Attending my first ever JDRF Walk was described in A Bitter-Sweet Experience.

Having members of the JDRF reach out to me after An Open Letter to the JDRF.

Having a nearly two-hour long conversation with the Mike Kondratick, Director of the JDRF Grassroots Advocacy Program (more on that discussion in a two-part post during National Invisible Chronic Illness Week, September 13-17).

Seeing the JDRF actually give some recognition to World Diabetes Day (WDD) by moving their Type 1 Talk event from November 6th to WDD on November 14th. You should start hearing more about that in the next few weeks.

I’m wanting to be more involved, but I still am not really that interested in fund-raising. Yes, I realize that is the core mission of not only the local JDRF chapters but the federal level as well. And finding the cure is the ultimate goal of anyone whose life has been touched by diabetes.

But, honestly? Being focused on fund-raising does not really assist us in dealing with diabetes on a daily level. That is up to us to do and what I see happening is that the JDRF is starting to utilize the tools at their disposal to help us find each other. Facilitating meet-ups that are not necessarily focused on fund-raising, but having presentations of interest to the Adult T1 crowd and sometimes just to sit down and just visit.

That is something that is just starting to happen in some places, while it has been going on for quite a while in others. I’d like to see more of an over-arching policy from the national level to the local chapters; at least providing them some guidance with outreach to the Adult T1 audience as something other than volunteers or fund-raisers.

It is something that those of use out here in the real world have realized for a long time. We all know what it is like and we need to be able to interact with others that are “in our demographic”. The internet has made it much easier to find others on-line and that is an incredible community.

But sometimes, you just want to sit down face-to-face and actually hear what they are saying, body language is so important to really understand a person and that is often lost in today’s text, tweet, email, and blog filled world we live in.

Posted in dblog advocacy jdrf diabetes, HCSM, support. 7 Comments »

First Impressions of My Animas Ping

August 20, 2010 — Scott

It’s been a while since I posted anything, so today I decided to share my experiences with my impressions with my Animas Ping pump that I’ve used for the last week or so. As with anything, there are things I like, things that annoy me a little and one particular thing that I think was done wrong.

What’s wrong with it you ask? Well, basically it is much too easy to cancel a bolus. I normally carry my pump in my front pants pocket, clipped to the top. Basically, I sacrifice a pocket for my pump and cgms. To cancel a bolus on the Ping, you can press ANY button on it. So here I am, the pump is actually locked, bolusing from the meter. Pump never leaves my pocket. Handy, but as the bolus is being delivered, I shift position a little and manage to compress the pump enough it senses a button being pushed, even tho I didn’t. Sometimes I can hear the “chirp” telling me it was canceled, sometimes not. And having it locked doesn’t help, it gets unlocked automatically when the bolus starts. I’ve done this two or three times, once I didn’t catch it and I’m glad I had my cgms, because I only got about half my intended dosage.

Now on to the annoyance. This also has to do with bolusing, it has wizards to help compute doses for meals or corrections and it will show you the suggested dosage, HOWEVER you have to MANUALLY enter that number in the bolus amount field. That is annoying as all get out and just seems like trouble waiting to happen.

What I like! The screen on the pump is so much better than my MM. However the screen on the meter/pda is still that grayscale that OneTouch seems to like. hard to read at times, esp since it has no back-lite, hopefully they’ll address that soon. *correction it does have a back-lite, albeit not a very bright one. *hat tip to Lili!

The boluses are also delivered very quickly and the pump vibrates every time it delivers one unit.

Also, I can adjust basal rates at much smaller increments than I could with my MM, and there are a couple of rates where that has come in handy.

The pump itself is also smaller than the MM and honestly it feels a lot more “solid” than the MM.

Overall, I like it and I think it was a good decision for me.

Well, that’s all for today, thanks for stopping by and have a great weekend!

Scott

Today’s snarky comment: Eating meat is murder. Tasty, tasty murder.