Lemonade Life

Friday, September 29, 2006

Ms. Blass Goes to Washington

Considering how vocal I am about living with diabetes and my determination to help find a cure through political advocacy, fundraising and education, someone might be under the impression that I have always liked to talk about diabetes.

Well, I haven't.

In fact, for most of my childhood and up through the middle of high school, I didn't like talking about diabetes. I never hid the diabetes, and all my classmates and teachers knew very well what was going on, but I only attended conferences or outreach events when my parents brought me with them. A girl I had met at camp was a very vocal advocate for diabetes, but I just wasn't into it.

Why would I want to talk and think about diabetes anymore than I already had to?

It was brought to my attention around my freshman year in high school that had a harder time living with diabetes than me. It is true that children face discrimination, depression and a lack of available medication around the world. And I finally decided that maybe, just maybe, I might be able to do something about it.

Not alone, of course. But when I read on the JDRF website that they wanted children to go to Congress to ask for more funding for research (and they were going to pay for you to go), I thought, "Why not?"

Children's Congress. It was an idea started by a nine-year-old boy named Tommy Solo and it has turned into one of JDRF's biggest national media events of the year. A hundred children with diabetes travel to the nation's capitol to ask their Representatives, their Senators, for help in curing their disease.





The press conference and
performing the Promise to Remember Me song
We stand in unison on the steps of the Capitol singing our hearts out, asking our Members of Congress and the world to "promise to remember me."

We sit together as our fellow delegates and their parents, celebrities like Mary Tyler Moore and Kevin Kline, and doctors like Allan Spiegal, plea on our behalf to a Senate committee. Sitting in a crowded room, with multiple cameras from network television studios rolling, with parents whispering and crying, with the youngest kids sitting in a circle in front of the Senate committee, you can feel the electricity empowering each person to stand up and shout out that they want a cure, that they deserve a cure, and that the Members of Congress are the ones that can help.




Me and Senator Gordon Smith (R)

We meet with our Senators and Representatives individually to discuss with them the challenges of living with diabetes, the heartbreak parents face everyday, and frustration and anger that we all have in being told "five more years."

And when we are done with our political duties, we return to the hotel for an evening of laughter and dancing, of discussion and strategic planning, of children meeting other children from their local area who also have diabetes and parents who finally meet others who are as passionate and determined about finding a cure as they are. People who understand and people who are there to fight.

There is another Children's Congress coming soon. This one will take place in Washington D.C. from June 17-20, 2007. If your child is between the ages of 4 and 17, I strongly urge you to apply. Applications are due next Thursday, October 5 and you can apply online at the JDRF website.

And if you think it's too late, it's not. I applied for Children's Congress the day before the applications were due. I didn't just mail it in the day before, I wrote it the day before. And for whatever reason, they actually let me go.

If you believe you have the heart and mind for this lifechanging event, please apply.

(And a personal note to Sandra Miller: I swear to God, if you and Joseph do not apply for this, I am not going to be happy with you, young lady.)



Sunday, September 24, 2006

I Start School Tomorrow...

...And I have a fever of 103.1.

Am I being punished for something? I mean, honestly, what are the odds? What do I keep getting these outrageous fevers that go up, then down, then up, then down, etc. etc.

I woke up with a jackhammer instead my skull, a large rock attached to my tonsils, and my temperature was toasty 102.1. It came all the way down to 100.0 by 6:00. I'm in the clear, I thought, Just a 24-hour bug it seems.

I have been lying on the couch all day, drinking chocolate milk and orange juice and eating toast with honey. I have taken 4 tablespoons of DayQuil and 8 Ibuprofen. I even ate a banana in an attempt to get some "nutrition" into my system. I hate bananas.

Now it's up to 103. I guess my body misses that California heat more than I thought.

Seriously.

What the hell is my body's problem?

My temp basal is set at 200% and I'm still 235 mg/dl. I haven't even tested my ketones, seeing as I don't have any more ketone strips, though with my luck I'm sure I'm a lovely shade of royal purple.

The last time I got this sick was the day of our big Walk Kickoff. Why do I always get sick right before an important day? Why?!?

Sigh.

But on the bright side, our Walk to Cure Diabetes is next Sunday and I have raised over $1500. This is three time more than I raised last year and over $500 more than my largest fundraising year ever.

But I only have 32 donors so if you are interested in helping reach my goal of 100 supporters, please visit my Walk Central website and donate. Anything helps and every donor gets counted as a supporter. Please help me reach my goal of 100 supporters by visiting the Team Lemonade website.

Ok, I'm off to go crawl into bed and die.

Wednesday, September 20, 2006

I Spoke Too Soon

Ahem.

Please ignore everything written in the previous entry.

::bows head in shame::

Remind me to never announce something before actually clarifying that the thing I'm announcing is actually ANNOUNCABLE!!!!!

I hate technology. I really do. I don't care that smart pumps, five-second glucose meters and islet cell transplants fall under this category. I really, truly think technology (at least most of it) is the spawn of Satan.

Okay, so the past week or so I've basically been off the air. Not even in reruns, mind you, but completely non-existent. That's because the other template that I spent hours working on looked all nice and shiney on Firefox, but when you try to view it in Internet Explorer it's a gigantic muddled mess.

It was horrible. And humiliating. So I had to delete the whole thing.

Heather and I have been playing around with the margins for awhile, trying to get the colors, fonts and alignments squared away, but then I left for California on Friday and couldn't work on it. When I got back, Heather still hadn't figured out a way to fix the sidebar, so I just scrapped it and started new.

I hope you are grateful for all the hard work I put into this website!

Anyhow, I have returned, not only from the Cyber Abyss but also from sunny California. I already miss it. It was sunny and 70 in the Central Valley of Death (I hate Central California. Really, I do.) and when I returned home, it was 60 and raining. The stereotypes of California and Oregon were never more apparent.

The trip was great, despite being in the Central Valley of Death. I arrived Friday afternoon and had dinner with my Gram and then went grocery shopping, where I bought more junkfood than I could possibly eat in one week (most of it came home with me in my suitcase). One Saturday, I made my Peanut Butter Chocolate Chip Oatmeal cookies and then my cousins and I went to see Little Miss Sunshine (Steve Carrell is my hero and I want to adopt Abigail Breslin) and then went out for drinks, where I added two new beverages to my repetoire (Vodka Cranberry and an Appletini, which I hated). On Sunday, Gram and I saw a dinner theater production of Grease, except it was at lunch time (so I guess that makes it Lunch Theater). It was fun, except the guy who played Danny was a bit chubby. On Monday, I went shopping, which is fun except for the whole sales tax thing. As much as I know the reason why Oregon can barely stay afloat as a state is because we don't have a sales tax, I absolutely loathe having to pay sales tax when I travel. You'd think by now I'd be used to it. But I'm not. Later that night, my cousin, Lauren, picked Gram, her next-door-neighbor, Bertha, and I up and we drove to Table Mountain Casino to meet up with her parents, my aunt and uncle.

That's right folks. I went to a casino. I gambled. And I won $35.

Just another reason to add to the list of why I am awesome.

My uncle, unfortunately, has been recently diagnosed (or self-diagnosed, I'm not sure which) with Type 2. I know, it sucks. And what's worse, we think it was caused by a liver transplant he had 4 years ago. The man just can't get a break. And of course, the entire family thinks of me as mini-CDE, so I'm getting thrown questions about triglycerides and cholestrol medication and diet this and blood sugar that and why is this happening when... When I say I know a lot, I mean I know about about Type 1! Not Type 2! I tried to tip-toe around the questions without saying anything definitive. Hopefully I can find my uncle a diabetes educator in the Central Valley of Death who can answer his questions more effectively than me.

On Tuesday, I went to lunch with my aunt and Gram, and my aunt bought me a cute little bathing suit which I wore to go swim at Bertha's. Later that night, my cousins came over again and we had dinner and yet another birthday cake (I think I've been sung "Happy Birthday" to enough times that I've aged five years).

All in all it was a very fun weekend and I much needed respit from the world of diabetes. It almost would have been a complete break from diabetes if it hadn't been for my uncle and the triglyceride conundrum.

But now I'm back, better than ever, and complete with a nifty new template that actually works.

I hope.

::crosses fingers::

Tuesday, September 12, 2006

WARNING: Do Not Attempt to Operate After Midnight

Well, I suppose this is what I get for trying to spruce up my blog template. First, I couldn't find a template to go with my wonderful Lemonade Life logo (which I will never get rid of, unless someone can come up with something outstandingly superior). Second, all the templates either made the font of the posts too small or it mades the font of the sidebars too small (even this one is cutting it a little close with the About Me section...). Then, after perhaps finding a template suitable enough for me to call it a night and log off, I made the mistake of deleting one strand of HTML (note to self: never delete, always cut! NEVER delete, ALWAYS cut!) and it sent the entire sidebar flying across the page and onto the blog post, rendering the post unreadable and the entire blog a disaster zone.

Thus, at 12:30 a.m., I called it quits and put up a little "under construction due to sheer stupidity" note in small and simple bold font.

It really is ridiculously hard to find a good blog template unless you pay for it. I don't really have the funds to pay for one, and even then, there's usually a waiting list for a good designer, and with a comletely deleted template (thank God the posts were in tact. Repeat. Thank GOD the posts were in tact!) I couldn't very well just let the blog sit there with a note on the door saying "Sorry, Allison is currently unavailable. Please try back another time."

How rude.

So now, although this is also nearing the witching hour, I found a blog that I think might be suitable for my purposes. The font's nice and the paragraphs do not create five word sentences. I also like the nifty The Lemonade Network up at the top, which is a collection of all the places where I do work, either by contract or by sheer philanthropy. Then I have my little bar of information about moi, which will be linked back to posts that haven't been written yet (the wonders of changing dates on blogs). That stuff isn't up yet so you can roll your mouse over it to see the pretty colors, but that's about it... I'm also happy because I can keep a complete list of all my articles and interviews without looking like I'm from Planet "Look at me! Look at me!" (props to anyone who can tell me which movie that comes from).

Anyhow, more changes coming, but I have to get up early since our Walk Ambassadors are going to be on AM Northwest tomorrow.

So let me know what you think and, of course, if you have suggestions for what I should add or change, feel free to leave a comment. I'm open to suggestions, but keep in mind that I might not be physically capable of implementing the ideas... But it's always nice to hear what people think.

Unless you think my blog sucks, in which case, if you don't have something nice to say, you probably shouldn't say anything at all.

Monday, September 04, 2006

New Discoveries

Discovery #1: Adventures in DexCom


Last Wednesday I was given a trial of DexCom by the Nice Folks at OHSU. Now, the insurance company pays for it for 3 days, but since the third day was a Saturday, and it's Labor Day weekend, I actually get to wear it until tomorrow. Six whole days of DexCommy good fun.

Or was it?

Ok, so last week, Amy commented that people were firmly planted in the Upstairs or Downstairs group with little room for movement. For the first couple of days I was definitely in the upstairs group.

Here's why:

1) It's a FREAKING CONTINOUS GLUCOSE monitor. Which is quite possibly the greatest diabetes invention since the pump. And anyone who say otherwise is either a cynic or stupid.

2) It trends nicely. Want to know if you're going up or down after a meal, Dex can tell you. This has proved exceedingly useful in the realm of Symlin and alcohol and it showed that neither is as predictable as one might assume and/or hope. In fact, part of me wants to give up Symlin entirely as I discovered that I could essentially not take insulin for two hours after taking Symlin and be just fine. And those lows with Symlin may not have had been bad carb counting, but the Symlin actually dropping me. 10 units of Symlin with dinner, no insulin, and in one hour I went from 250 to 115. Watching the blood sugar while drinking has also proved beneficial, though slightly confusing, and it's nice to see where you are headed without having to test every 15 minutes.

But after a few days, I'm starting to feel myself walking down the stairs. Here's why:

1) First and foremost, accuracy. It's the issue on everyone's mind, and while the trends were always right on, Dex didn't necessarily know where you were coming from and where you were going, just that you were, indeed, going. Some of the readings were within 10 pts, which fits with the standard variation between meters, but most of the time they were 20-30 pts. off, and sometimes as much as 50-60, especially the higher I got.

2) It's a second contraption. I know being on the pump should make me somehow adaptable to carrying around gadgets all the time, but honestly, bringing that Dex around is kind of cumbersome. The thing is not small (it's bigger and wider than a pump, but it is thinner) and the thing has the dumbest case in the world with a clip that doesn't really clip.

3) Losing signal. It didn't happen so much Wednesday, Thursday and Friday, but as soon as Saturday hit, I started receiving gaps in readings. I don't know how common this is, since no one has mentioned it before. I have also had to restart the sensor twice (in addition to the usual 3-day restart that you do get more life out of a sensor). Because of this, I'm not sure how it affects the accuracy of the Dex.

4) Information overload. Honest to God, looking at the numbers for the first day or two is really, really cool, but after awhile, I think I'm starting to get a little more freaked out. You see every single little change in blood sugar. Up and down and up and down and up and down. I don't know where half the change is coming from but boy does it like to change. And with aforementioned accuracy issues, I don't even know if the changes are actually occuring!

Edit: I forgot one more.
5) The sensor essentially stopped working in the middle of the night on Saturday. I wasn't sure what it meant so I tried to restart it and do the calibration again, but it basically was way off for all of Sunday. It still did the trends fairly good, but the numbers were ridiculously off, and there was nothing I could do because I didn't have another sensor to use.

So those have been my 5-day observations of the Dex and although the Downstairs points seem to outweigh the upstairs, I think I might be the rare breed of the Sitting on the Stairs Folk.

I like CGMs. Really, I do. It's definitely given me some useful information about how my body reacts to Symlin and to alcohol and hopefully I'll be able to figure out how to integrate this into my plan.

And perhaps some of these issues would work themselves out if I had more time to get used to the Dex. I am only on it for 5 days, which really isn't a fair assessment of a CGM.

There are major bugs to be worked out and hopefully The Next Generation of DexComs and Guardians, and the impending Navigator, will yield more promising results. It's kind of like signing up for the very first insulin pump... And if any of you have seen pictures of that monster, all I can say is: Scary!

~*~

Discovering #2: Alcohol Is Verrrry Tricksy

I'm glad that I'm finally legal and can talk about this without worrying about the legal ramifications of discussing underage drinking on a public website.

One of my very good friends, Julia, turned 21 yesterday (Happy Birthday to Julia!). And of course, we went out and drank. On Saturday and on Sunday.

Both nights fucked up my blood sugar.

Saturday, one drink dropped me two hundred points in two hours and on Sunday, two drinks brought me up 150 points in about two hours.

Now, I know that really the only way to figure this out is to do a very scientific experiment of drinking the same thing each time to see how different insulin amounts affect it. I know the kind of drink, the food I'm eating, etc. etc. all affect blood sugar.

But I was hoping the, uh, older people of the O.C. could help me out a bit by giving me some suggestions, tricks, carb counts, basal settings that might work... Anything.

The recommended (to me at least) 60% basal for 2 hrs per drink fails miserably. I'm in the 300s after an hour and I don't crash until hours later, if at all.

I tried 80% for 4 hrs on Saturday, and I ended up at 78 after 5 hrs. Since I was having twice as much to drink, I tried 70% for 7 hrs, and I woke up at 336.

There has to be a happy medium to this, and dammit, I will find it!

But suggestions are always appreciated.