Lemonade Life

Thursday, April 19, 2007

Tales of a Suitcase

I have finally made it back to Oregon. I started this post when I was still in California, but I'm finishing it here in the 'burbs of Portland. So I've had to rewrite the entire intro, but the rest of it is still the same. Onward:

Let's see... where to begin?

The conference was great, albeit a bit repetitive at some points. The problem when you read a lot of blogs, talk with a lot of people with diabetes, and attend a lot of lectures and seminars about diabetes is you tend to notice that new information doesn't appear nearly as often as you would like. Read: NEVER.

I'm *still* hearing the stats of the DCCT study. Anytime I hear that acronym it makes me want to jump out of the nearest window...

That being said, it was a very productive conference. John Walsh and Ruth Roberts donated quite a few items for the OCNMC including Pumping Insulin and the My Other Checkbook (that's the logbook that looks like a checkbook), a Calorie King book, and an insulin garter holster. Angel Bear Pump Stuff donated a mousepad and lunchbox, and Lifescan/Johnson and Johnson donated two glucose meters, the new Ultra 2 and the Ultra Mini. I think I'm pretty much set for the year!

Edit: I don't think I explained this paragraph on pump sites very well, so I'm editing it a bit:

I also spent quite a bit of time talking with John Walsh who informed of a very interesting pump tactic that I had never heard of. When we were talking, he told me that he used this photograph from Kerri's St. John post (the one of her right thigh site on the beach) in a presentation recently. He says it's actually very damaging to the skin because of the tugging on the cannula. The reason is because if a pump is ever dropped or the tubing is tugged (i.e. if Kerri stood up or rolled over), it causes irritation at the pump site. John recommend using sports tape to tape down a portion of your insulin tubing near your site to minimize the amount of irritation that is caused where the cannula is. Supposedly it also helps with absorption, but mostly it just helps your skin! So there you go....

Symlin was also discussed quite a bit at the conference as a means to controlling post-meal blood sugars (duh) and while I maintain that I hate the drug because it's so damn painful, according to a member of my family that works for Amylin (FTWFA), that's very uncommon and probably not a very good reason to discourage people from taking it. So be it. According to FTWFA, the Symlin pen should be out this year. Maybe that'll make a difference in my body's reaction, maybe it won't. We'll just have to wait and see.

On Tuesday, I spent the night in La Jolla and saw FTWFA. We had a nice long discussion about diabetes, clinical trials and how they hardly ever happen for potentially awesome drugs because of how gosh darn expensive ($400 million anyone? Do *you* have $400 million?) and the Brazil trials, which he says (and he is a doctor, so he should know) will never happen in America because there is no way that the FDA would ever approve such a risky procedure unless it's done in other countries first. Part of me is mad about that because, hey, I want a cure, but on the other hand, removing the immune system, regenerating the pancreas using stem cells and the undergoing a bone marrow transplant to restart the immune system? Um. No thanks. I'd rather risk the chance of minor complications at thirty years from now than do *that*.

However, there was a bright side. FTWFA mentioned that doctors are theorizing (via anecdotal Byetta stories and studies like the mice at Toronto's Kid's Hospital) that our beta cells might not be completely dead after all. FTWFA told me that there is potential that our beta cells really are continually regenerating, but our immune system is programmed to kill off the beta cells as quickly as they appear. There is such an on-slaught of immune system fighters that the little beta cells never have a chance. But a couple Type 1 patients on Byetta (not that they are supposed to, it is NOT designed for Type 1s and they shouldn't be on it) are saying that they have reduced their need for insulin, so there is a possibility that the immune system just needs a little ass-kicking to back off of the beta cells. Now, this is *just* a theory and has in no way, shape or form, been studied in clinical trials. But given what happens to islet cell transplant patients and what happened in Toronto last December, it seems reasonable to think that diabetes is actually a continuing war, rather than just a one-time death.

Things to think about...

I also had another wonderful encounter with a member of the OC this past weekend...

I met George Simmons.

But this post is long enough. So I think I'll save that one for tomorrow.


At April 19, 2007 8:52 PM , Blogger Keith said...

Oh man, if the islet cells aren't really dead I'll have to change the name of my blog! ;-)

Glad you enjoyed your trip! Sounds like fun and hey... educational too.

At April 20, 2007 4:54 AM , Blogger Chrissie in Belgium said...

Everytime bloglines tells me you have a post - I get so happy since it failed to work for so LONG! Sounds like you had areally fun trip! I had a terrible time getting my insertion sites to stick and then I began using a transparent film which I put over the insertion site . It is made by Smith + Nephew. The film is on a roll and about about 4 inches wide. It is so great no longer loosening / pulling out my insertion sites! So are you still untethered?

At April 20, 2007 7:16 AM , Blogger Scott K. Johnson said...


And you actually got to meet G-Money! That rocks!


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