Are you a Tiki-betic?

I'm glad there's a "Beyond Tiki" forum so that I can post the following question:

Are you into Tiki and Diabetic?...A Tiki-betic!
I am - Type 1: Insulin Dependent.

So yes, I'm bummed that I CAN'T indulge in a Mai Tai, Blue Hawaiian, Navy Grog etc., like my fellow TC'ers. Yes, I'm bummed and can't have the Hawaiian Ribs smothered with all that rich, sugary sauce. Yes, I'm bummed I can't have a whole loaf of warm King's Hawaiian Bread all to myself. Actually, it's a pain in the ass being diabetic.

So, what do I have? Well, fortunately, milking a Martini, or DIET COKE and (a little) Rum, are ok for me. For some (lucky) reason, a little Vodka or Rum doesn't affect my blood sugar level. Usually, I'm the designated driver, and you'll usually find me clicking pictures of all you silly intoxicated people at the gatherings!

So anyone else a Tiki-betic?

SugarCaddyDaddy

Very cool! I mean, it's not cool you're type 1, that overall kinda sucks, but cool you're there. I dunno what I'm talking about.

Anyway, Mr. Humuhumu is Type 1 (diagnosed 20+ years ago, when he was 16). Mr. Humuhumu actually doesn't limit his diet much -- he indulges in sweets just as much as I do, he just takes insulin for it. For normal (non-alcohol) drinking, he avoids juice and opts for diet options, but he doesn't do that when having cocktails -- he takes insulin if neccessary, and anyway, most of the time he's eating also. Have you tried V8 diet splash? It's hard to find, but it's as close as you can come to juice without carbohydrates.

Another connection (which is actually totally coincidental) is that I'm doing Type 1 diabetes research -- I'm leading a team of people doing integration of data generated by many different type 1 research centers around the world to do systems biology research -- instead of doing research on one gene or protein at a time, we look at how the whole system of genes, rna, proteins, etc., learning how they work as a network, with the intention of learning what in the system has gone wrong for a diabetic.

Right now, we're focusing mainly on genotyping data (genotyping is where samples from affected individuals are tested for specific polymorphisms [polymorphisms are alterations in the genetic code -- everyone's code has bases that differ here and there, about once every 1,000 bases] and since these polymorphisms are inherited, we can link particular polymorphisms with inherited diseases, which can help us 1. identify regions of the genome which likely contain genes or that, when altered, make the individual more likely to inherit the disease, and 2. identify those individuals who are more likely to inherit a disease, so that we can target them for treatment) and microarray (gene expression) data (a microarray is a small glass chip which has up to 40,000 individual small chains of gene sequence printed into an array, each one representing a different gene [in actuality, genes are replicated on the chip for quality control -- usually there's about 10-15K different genes on a human chip] -- when two samples [for simplicity's sake, we'll say a blood sample] that have been specially labeled which a dye tag that lights up when excited with a particular laser are smeared over the chip, we can tell what genes were actively being expressed (and somewhat by extention, what proteins were present in the sytem) at a higher or lower rate in one sample vs. another. For instance, if you could look at samples taken from a diabetic as their diabetes was first developing, you could see what genes were being activated or deactivated, giving you a key to understanding what the true mechanism is. We'll also be branching out to include proteomic data (kinda like microarray data, but it looks at the quantity of proteins being expressed, a step closer to reality than microarray data), and more traditional cell biology data.

I know that's totally not what you were asking about, but I think it's just so damned cool. It's not going to help diabetes much over the next 10 years, but it could hopefully help us come up with some personalized treatments, or even possibly preventions, over the next 20 years. But I'm also keeping up with all of the more advanced research that's happening -- there's fascinating work happening with gene therapy and bioartificial pancreases, and of course the transplant work is fantastic, even if it's not going to be the ultimate answer to the problem.

So! Are you on the pump? Have you looked at the new wrist-watch lookin' continual sugar-checker? Have you tried the new glargine?

So! Are you on the pump?

I am. But it doesn't work very well....er, what were we talking about again?

Yo Daddy

Yes I am also one of us that is "to sweet" in the blood department. Almost 10 years on the type 1 railroad. I "walk on the wild side" with alcohol only when it is something special such as the very hot day, single margarita craving or on a visit with my TC friends. Even then I will only have one or two drinks at the most and make necessary adjustments with food and insulin. For the most part it has not been much of a worry. The first 2 years were a bitch as I was very strick with myself regarding booze. I found that it did not really effect my blood sugar that much. Also reading that there were acceptable limits on alcohol consumption for diabetics I decided that I would not deprive myself from the special occasion drink. My method of fun and relaxational imbibing has been more on the "herbal/natural" level, allowing me to have a couple of drinks and still party along with a club soda the rest of the night. The only problem with that is like you mentioned, it is very hard to avoid the sticky ribs and goodies at the gathering. So, it doesn't have to be alcohol in my tiki mug for Trustar to party either.
Hope we can share a soft drink "something" at the next TC gathering.

That sweet ol guy, Trustar

Humuhumu~
That's great that you are part of a research team specifically for TYPE 1. Unfortunately, 95% of all the studies and information out there are on TYPE 2 diabetics, not TYPE 1. Does that make you as mad as me? There are not nearly as many of us TYPE 1's so we seem to be kicked-to-the-curb when it comes to research and info.

I do love to take a taste of my wife's various tropical drinks, although I can't (won't) consume a whole drink myself. Sure, most people would think "just take some insulin". Sounds easy enough, but it isn't. It's all trial and error. Take too much insulin, then there's the sugar-low. Too little then there's the possibility of spilling Keytones in your body. It's a roller coaster, back-and-forth struggle to get back on track if you get out of range on you blood level. Luckily, I have never needed to have the Glucagon Kit used on me. I've always TRIED to keep in control. Sure, I've had that 50 scary low. Most of us have at some point. I'm not on the pump. Never liked the idea. For me personally, it just reminds me of being fitted for a colostomy bag (even though it's nowhwere related), it's just the thought of an external unit being "hooked up" to me. As for the Gluco-watch. Good idea, I've researched it. It takes your blood level every 20 minutes. Drawback: It's not covered by insurance (yet). It's REALLY expensive, and there are still some bugs in the unit to be worked out. It will get there, I'm sure.

For now: it's Lantus Insulin for my long-lasting, Humalog Insulin for my quick-reacting. I test 10+ times a day. My Hba1C level (taken every three months): 6.2. Average level: 122. All other blood readings such as Cholestrol, triglycerides, etc., are that of a non-diabetic. I'm proud of my level control. My doctors are pretty happy since I've found out that most of their patients are not good at keeping a good glucose level.

For the long run, eye, kidney & nerve disease is what I want to stay away from in my old-age, and doing that means taking care of business NOW. Remember, maintaining higher levels now will get you (in a bad way) at the end.

So, like Trustar, a cocktail or two followed by Club Soda or diet drink the rest of the night is ok. We can still have fun!

Oh, by the way, there is FINALLY a sugar-free Slurpee! For those non-diabetics, they may think "so what!". For us that truly miss that brain-freezing good taste, it's a real treat! Why? BECAUSE IT'S A TROPICAL DRINK WITH THE ADDITION OF A LITTLE RUM!!

Sugar-freeCaddyDaddy

[ Edited by: sugarcaddydaddy on 2003-01-18 13:56 ]

I think my husband is able to get away with the "just take some insulin" approach because he's gotten very good at gauging exactly how much insulin he's going to need, or how much more food he needs to eat to match the insulin he's taken. Right now, he stocks Humolog, N, R, and Glargine, and uses whatever is appropriate. He's able to keep very tight control, and his annual tests are always fantastic. And, as I said before, the only thing he's stricken from his diet are straight fruit juice and soda pop. Mr. Humuhumu (who actually is Dr. Humuhumu, M.D., Ph.D., but prefers to go by Mr.) has had diabetic patients in the past, and probably hasn't advised them to do what he does -- most people aren't as anal about control as he is, and wouldn't be able to pull it off. However, when a fellow doctor was just recently diagnosed with Type 1, he advised her that it was possible to lead a more normal life than the docs tell you. Mr. Humuhumu assures me that his endocrinologist (who's really good -- one of the world's type 1 experts) knows how he is choosing to manage his diabetes, and thinks it's probably okay. But we won't have any way to say for sure that it's safe until he dies after a long and complication-free life. So I dunno, maybe you can just look at Mr. Humuhumu as an experiment for future diabetics to look back and learn from.

Re: Type 1 research v. Type 2 research -- I wish I had some figures on research dollars I could give you right now -- maybe when I'm back in the office. At any rate, 90-95% of diabetics have Type 2 (and that imbalance is growing), so it may be appropriate that 95% of the info you see is for them. However, Type 1 does hit children (although these days, Type 2 does too, which is alarming), and is of course a more serious disease, so I do think it's gotten much more than 5-10% of the research dollars.

So little is really biologically understood about diabetes that much of the research being done (particularly in the area of complication prevention) benefits both diseases.

The Juvenile Diabetes Research Foundation has been an amazing force in Washington D.C. They are rated very highly by charity watchdog groups for keeping overhead costs high. At the same time, not only are they funding some very innovative Type 1 research, they have (successfully) put substantial pressure in the NIH to fund more Type 1 research. A year and a half ago, when President Bush was constructing his policy on stem cell research, the president of JDRF was sitting in the Oval Office lobbying for stem cell research. From where I'm sitting, Type 1 is getting a lot of attention, and a lot of money.

Again, I wish I had Type 1 v. Type 2 funding #'s. I could totally be wrong. If I am, I'm afraid that a lot of Type 2 funding is also appropriate -- it will benefit Type 1s, and the explosion of Type 2 patients is going to be a huge drain on the health care system in the future.

Personally, I think that the research currently being done is fantastically promising. I think that there will be some substantial advances that will really dramatically impact the lives of Type 1 diabetics (if not total prevention, then by dramatically lessening the risk of complications, or increasing quality-of-life), within our lifetimes. But I could be totally talking out of my ass.

Interesting news for tiki-betics!

Lime Diet Coke hits U.S. stores

Also, if anyone gives a hot damn, here's a link to my team's data integration work as discussed upthread. I've moved on to other things now, obviously, but my colleagues in Seattle are still working on this.

I've been type 1 insulin dependant for 23 years (since I was 12). I actually got diabetes because I was hit by a car when I was 10. I suffered internal abdomonal bleeding because of the accident and two years later my pancreas stopped producing insulin. Doctors attributed it to the accident, but back then who really knows. I'm a bad bad boy. I've never really taken care of myself the way I should. I have rarely been a regular blood sugar monitor. All my life I've eaten sweets but drank diet sodas instead of regular??? In college I over indulged in alcohol almost every weekend and also had a bad 3 year stint with cocaine. Not a very healthy combination(just ask Jerry)!!! I still over indulge in sweets, beer and the sweet tiki drinks every more than I should, but I try to take extra insulin. Again, not an exact science and surely detrimental to my health. On the positive side, my eyes are perfect, all my limbs have great circulation, I'm a tad overweight but I'm in pretty good health. Lately I've been trying to be better, eat better, drink less, and check my blood sugar. I guess I've lived the "I'm gonna enjoy life and do what I please and accept the consequences later". Well, it's getting to the later(it feels like it but I'm only 35) and I'm afraid the consequences will start becoming problems if I don't change my lifestyle. Sorry for the rant-Yes, I am into Tiki and Diabetic.

Scotty

I got saddled with Type 1 after a bout of Montezuma's Revenge in Acapulco about 20 years ago. Early on I realised is was not going to give up anything, so I usually eat and drink in moderation, and will resort to a booster shot if needed. I usually keep my levels under control, and even ran 7 marathons, finishing 26.2 miles with blood/sugar levels in the normal range.

I will eat most foods, but noticed that bagels shoot my sugar levels astronomically (about as much as 7candy bars.)

On 2004-01-15 10:38, Humuhumu wrote:
Interesting news for tiki-betics!

Lime Diet Coke hits U.S. stores

(snip)

i tried "diet coke with lime" yesterday and was very impressed! i would imagine a "diet coke with lime" in a tiki mug with a garnish would be a great option for our so-inclined ohana... j$

When I get lazy I mix diet coke and a shot of Capt Morgan's run and have a "Skinny Pirate" it's sort of tiki and any bartender can make it right

Johnny Dollar wrote:
i tried "diet coke with lime" yesterday and was very impressed!...

Ok, I'll have to try DC with lime. I tried DC with lemon and it tasted like I was drinking out of a glass that wasn't rinsed well after being washed with lemon scented dishsoap. Yuck!

On 2004-02-24 01:23, SugarCaddyDaddy wrote:

Johnny Dollar wrote:
i tried "diet coke with lime" yesterday and was very impressed!...

Ok, I'll have to try DC with lime. I tried DC with lemon and it tasted like I was drinking out of a glass that wasn't rinsed well after being washed with lemon scented dishsoap. Yuck!

that's actually one of the reasons i was impressed by the lime DC, as the lemon DC tastes like lemony-fresh PLEDGE.

the lime diet coke tastes like almost like a funky but good daquiri, much less like a coke... of fourse taste is SUBJECTIVE so y'all proceed with caution :)

Have you seen the new Bacardi add. Double zero calories for Bacardi and Diet Coke. It's a funny commercial. Unfortunately the calories hit once the rum is processed!!!

Kanaka

I tried DC with lemon and it tasted like I was drinking out of a glass that wasn't rinsed well after being washed with lemon scented dishsoap.

Remember that thread about RAMUNE - the Japanese drink and candy that comes in bottles that look a little tiki-ish from one angle? The same ramune flavors come in a chewy form called Hi-Chew, and one of my favorite flavors is the lemon-with-cola flavor - really it's great.

I suppose discussing candy on this thread is particularly off-topic, but anyway there you go.

-Randy

On 2004-02-24 14:12, aquarj wrote:
I suppose discussing candy on this thread is particularly off-topic, but anyway there you go.

Not at all! Type 1 diabetics need to have a quick sugar supply on hand pretty much all the time in case their sugar drops low. If those candies are easy to chew up quickly and have a decent sugar content, then that little tiki canister is perfect!

I was surprised to find this thread (and a few others) here . . almost didn't look. I was diagnosed with diabetes (type 2, maybe type 1) about two weeks ago. Came outa the blue emotionally, but I knew something was wrong. I had (have) numbness and tingling in my feet and toes and haven't been feeling 100% for a while. LIke thebaxdog it was really not in my family history, and I'm within 20 lbs. of my recommended "ideal" weight. To quote Bax, "what the f@%#*"

I'd already started diet changes just because I have more energy if I eat less carbs, so I'm not bummed about changing what I eat. I am bummed about the added complexity of it all. I know I'll get used to it, but this ain't the simple life of a beachcomber-wannabe anymore.

They call it a disease, but I think it's more of a "condition." Maybe that's just some residual denial talking. At first I didn't want anyone to know; like I felt guilty that I'd somehow brought this on myself. Maybe I did, but there's nothing I can do to change that now. I was ready to start treatment the next day, but Dr.s don't work that way, and THAT was really frustrating. Now a couple weeks later I've learned a LOT through various diabetes websites, started Actos (Metformin made me feel like crap) and had my first education class. I'm a bit of a control-freak, so I think this is going to be right up my alley.

So how is Bax now? It's been about a year since his post in Bilge. How are all the other Tiki-Betics doing?

Silverline,

Thanks for asking. I'm doing well with my tiki-betes. Stopped drinking in December and have really got my blood sugar sorted out. I was binge drinking heavily for a couple of years and not taking care of myself. Not as much fun on the weekends, but I'll be around longer for it!

Scotty

Hey Silverline,
I know exaclty what you're going through. I was diagnosed with type 1 about 3 months ago and it came out of nowhere. (at 32 I was her oldest patient to be diagnosed with it - I guess I'm holding onto my youth as long as I can?) My endochronologist suspects that I had a virus that resembled the eyelets that the pancreas produces to move sugar through the body and now my white blood cells are killing my pancreas. So much for the white blood cells being a team player...

Thankfully, I've always been healthy, never overwieght and ate pretty good - though I miss eating a lot of pasta.
I know what you mean when dreams of life seem unobtainable right now becuase of diabetes. But let me tell you right now, that no matter which one you have science is on our side and you can lead a VERY normal life (with travel, with the food you like to eat and the activities you like to do). It took me a month to get comfortable with everything, but I still surf, work out and (most importantly) carve tikis. For strenious actvities that will drop my BS, I bring some gorp and chow down on suger mixed with protiens (nuts)

diabetes sucks - there's no two ways about it. I'm still pissed that I'm dependant on a needle to eat, but I can survive and do everything that I want to do and live my life how I want it.

Feel free to PM or Email me if you need any moral support
-Jim

Wow, Polynesiac, that's a load of "no fun" to have dropped into your lap right out of the blue. You've got a great attitude about it though. I freaked out for about a week, even tried to starve myself into better BG numbers (which doesn't work, BTW, and is just stupid) but I'm learning to have patience.

The suspected culprit in my case is is hemochromatosis; or very high iron levels in the blood. It's a genetic disorder where your blood doesn't rid itself of the iron it doesn't need. The excess iron builds up in your pancreas, liver and heart and can cause organ failure over time. Add to that the fact that my poor heart is basically pumping a Buick around all day and I was headed for disaster.

Hemochromatosis is like a 1 in 200 chance and most prevelent in white males of northern euopean decent. The real shame is that Drs don't usually test for it. If you haven't had an iron test, ask for it! It usually doesn't present symtoms untill you're over 30. The treatment is simple and effective; you give a pint of blood at regular intervals untill your iron level is normal, then give a pint every couple months to maintain it, Fixing the iron problem won't cure the diabetes, but there's a 40% chance it will improve once normal levels are reached. There's genetic testing you can have done to see if you're at risk, or you can just have the iron test done every couple of years.

Anyhow, it IS very encouraging what's being done in the way of long-term treatments for diabetes these days. I hear people talk about "the pump" and was really NOT looking forward to being hooked up to some contraption all day . . then I saw one. And now I WANT ONE! In the grand scheme of things, it could be a WHOLE LOT worse than diabetes.

I think about 80% of getting this under control is mental. Positive outlook and good attitude go a long way, as does the support of fellow Tiki-betics!

Just a random comment.
My uncle has adult onset diabetes, and a partytime answer he found recently that helps make him feel like he isn't missing out over much is to use one of the Jimmy Buffet frozen drink machines to make no-sugar shaved ice treats for himself. He just fills up a mug with those and wanders with the rest of the crew.

Wanted to pass the idea along, because he surely is thrilled with it.