Saturday, July 17, 2010

Airheads (but uh, not the candy)

first off, let me start with a disclaimer:
I am the world's most patient person.
No, really. That is not me being arrogant or bragging.
It's true. To the point of being a fault.
I don't make fun of people, I'm extremely patient (emphasis on extreme [this should explain its faultiness]), and I smile kindly at the most annoying and rude of people. Unless they're being rude to someone who can't help themselves...like the refugees I work with. Then I become like a lioness and will tear you to shreds. That, or like the time I saw some very mean children kicking a pigeon around that somehow had become disoriented and forgot it could, um, fly away. Either way, it was cruel and I rushed up and had some choice philosophical words for those kiddos. Then, I was not kind or patient. Just...honest. :)
*Phew*! What a tangent!
AnyHOO, I wanted to start with that lovely disclaimer because I don't want you to be put off by the title of this post (or the on-coming post, herein) and think me some kind of judgmental, intellectual snob. We all have our moments (as described in my above pigeon story) where we just can't take it. You know what I'm talking about. Ok, so I think I just lied, then. I am certainly not the world's most patient person if I have my moments where I just can't take it anymore. ;)
So tonight, being part of imperialist-consumer America, I wanted to go to the Body Shop in the mall (when do I ever go to damn mall?!) to look at their sale and buy some yummies for the upcoming mother in-law's birthday. She and I have this thing about really great creams and body butters now....so we're always on the look out for each other, haha. (Yes, I actually get along swimmingly swell with my in-laws....)
While we're at the mall, I just had to look in some of the shoe shops, because I do love shoes. When we went in, this girl, ohhhhhhh, this shop girl. Total antithesis of Steve Martin's brilliant character in his novella Shop Girl (yes, Steve Martin the comedian-actor is more than "just an actor": he majored in philosophy and writes real books, too). Wow, I am very tangential tonight! Note to self: never night-blog.
So this so-not-like-Steve-Martin's-Shop-Girl shop girl literally swoops down and clings on and won't let go. She likes the shoes I'm wearing. Thank you, shop girl. She wants to know my shoe size. 7 1/2. She sees I'm looking at Rocket Dogs and states that they are the most comfortable brand. Yes, I know this shop girl. That's why I'm wearing some and also looking at this lovely ballet flat. *Ahem* No, I don't actually think like that. ;)
But then, oh then. Shop Girl spies my insulin pump. Yes, it's green (Animas Ping!) So I can't complain, because I'm pretty loud and proud about Public Education in the World of Non-Diabetic Diabetes Education. But this girl. She began to come close to it. She's staring at it. Gabbing about it. Going on and on in this annoying giggling manner in which I could not get a word in edgewise to um, clarify a few things about the "cool Mp3 player" I seem to be wearing and oh-where-can-she-get-one.
"It's an insulin pump."
"A whaaaa?"
"An insulin pump. I have type 1 diabetes."
"OH! OH, oh oh! I just thought it looked so cool! Like, I love the color and thought it played music or was a cell phone or something. I just thought, like, where can I get one?! OH MY GOD, I had no idea! It just looks so
[get this]....normal."
"Well, I don't think you'd want to have to wear one of these 'Mp3 players'!"
She just flushed. Very red.
But that word normal. So problematic, eh? I am normal. I am healthy. I am happy. I'm just like everybody else and yet still very much unique me: we are all shattered and yet still whole (as Ron Rolheiser, a spiritual writer tells us.) You can't escape it, and yet can find so much comfort in it if you just embrace it as a fact of this beautiful, boombastically blessed life. We get so caught up in feeling awkward about ourselves no matter what's going "wrong" with our bodies that we forget that everyone's got something going on. Some people are just very good at hiding it or acting like nothing painful or difficult has ever happened to them. Difficulty and struggle are not always physical.
So why not use it as an opportunity to learn, to understand? Why always freak out and just start laughing and backing off? Why do we do that so much in the U.S? Is it just me thinking it's only an American thing?
I must give Shop Girl credit, though. She wasn't making fun of me. It was just the way she suddenly shut down and began hysterically laughing to deal with her own sense of..embarrassment? As if my disease and the need to wear an insulin pump was some private matter and she'd crossed the line with me. Yes, granted, some people I know are more private about their type 1. I completely respect that. And I have days and moments in my life, too, where I just don't wanna talk about it with you. Please just let me eat my food without you asking me a million questions. But most days I am open. Most days I'm happy to answer any and all questions people have because frankly, I know it confuses and [somewhat] fascinates people. When they meet someone who is open, they sometimes latch on viewing it as an opportunity to ask all of those questions they never felt they could ask more private people (Seriously, you shoulda heard my acupuncturist the first time she found out I had type 1! "Ohhh, can I see the site? How does this little machine work? How do you take it for a meal?" On and on. And on.)

I guess all I'm trying to say is that (and I think I'm quoting some other way more awesome members of the online type 1 diabetes blogging community here):
This is the new normal.
And I take no shame in that. It's not about showing off, either. It's just that this is my life now and I accept it. I live it to the fullest and have never, ever, ever stopped dreaming or loving life no matter what has come my way. I look forward to each and every day I am given, and find innovative ways to continue to do all of the things I did before I got type 1 at the age of 27. Each day is new and exciting and difficult and awful and ping-pongy and sweet and wonderfully BIG.
Even the days my green pump so does not match my outfit. :)


Wednesday, July 7, 2010

denise faustman's making headway~


I just had to post this because while I'm sure it appears that I'm on some "cure diabetes" kick lately [see last post] I promise I'm not. Well, who isn't that has type 1...but that's beside my point.
I just have a tremendous amount of respect for Dr. Faustman. I feel that she is honest, ethical, and not a brown-noser or a business woman. She (at least it seems to many of us in the Type 1 community) is concerned for the science behind autoimmunity; truly wants to understand it's mechanisms. That is why it is so incredible that she is using the time-tested BCG vaccine---we already knew it would pass the Phase 1 portion of the trial. It's amazing though, in this world of Big Pharma always winning, that no one stopped her. And no one did. Oh, they tried. They even tried to do bad science---set up experiments solely for the purpose of proving her own results wrong (when she regenerated beta cells back in 2008). In good science, you work by process of elimination essentially---you don't go about conducting experiments for the sole purpose to "prove" or "disprove". Funny thing is, when the angry scientists against her propositions and results revealed their own, they only found that she was right. Denise Faustman regenerated beta cell function in longterm diabetic mice by using the BCG vaccine. Now she's trying to replicate those results in humans.
The Phase 2 portion of her trial will attempt to do just that.
What so many of us love about her is how unassuming and un-arrogant she is. She blatantly says it might not work. She says it even might only give us a window to prevent hypoglycemia. But as Bernard Farrell said over at his blog a couple of years ago when he had the opportunity to interview Faustman: "Hey, I'd even take never having a low again!" Who wouldn't agree? The point is, she's onto something utilizing the immunological pathways to better understand our disease. This may not be about a cure, but just like pump and CGM therapies have changed the way we approach this disease, so will studying the how's and why's of the immune system's decision-making process to destroy our blessed little beta cells.
I won't be holding my breath, but I just had to post this to say that I'm proud of her. I'm so, so happy for Dr. Faustman because she's never let anyone who put down her work get to her. I really do believe she's in her field of work for the heart of the matter: to better understand what went wrong with our bodies---and how to make it (even a little bit) better quality of life. And yes, deep down we all hope and pray: maybe even a cure.