Tuesday, June 07, 2005

dLife {hearts} Me!

About once a day or so, I log into my stat counter, just to see where visitors are coming from. I noticed a bunch of hits coming from the dLife site and so I went there to check it out. And, hot damn, I am listed as a resource for dLife! Just as though I actually know what the fuck I am talking about and stuff! LOL

dLife is a program on CNBC which discusses life with diabetes, both Type 1 and Type 2. It's been hosted by amazing spokespeople with either Type 1 Diabetes (former Miss America Nicole Johnson) and Type 2 Diabetes (actress Della Reese). Along with several great diabetes bloggers like Amy and Violet, I'm listed! Folks cruising over here from dLife must be thinking, who the hell is this woman? She wrote some book I'm supposed to care about? Where the fuck is her diabetes discussion? I WANT MY MONEY BACK!

OK, OK, here's who I am. I am first and foremost a mother. And I am a mother of a child with Type 1 Diabetes. We are coming up hard and fast upon our anniversary of diagnosis, July 14, 2004. On that day, I plan to post our diagnosis story. I've written a very bad, first-draft version of it for another site... that's all I can manage right now.

I can't look at those horrible moments when my son was (unbeknownst to me at the time) just hours away from diabetic coma. The moments when I heard he'd be insulin dependent for life (actually a relief, because at the time I thought he was going to die). The moments I learned that potential complications included blindness. Amputations. Stroke. Kidney failure. As the pieces of news hit me bit by bit, I eventually became resigned.

By the time we hit the dentist, I knew enough to say... Kay hun. How does diabetes affect his DENTAL health? I wasn't shocked to hear about increased chances of gum disease. It's the capillary damage that gets ya. That seems to be the common denominator in all these complications. So we got special toothpaste and mouthwash, and yet another admonition to "keep blood sugars in range." Like that wasn't already my goal. We're trying. With 8-10 blood sugar tests a day (more if we're dealing with serious lows or highs), we're tryin'.

Before dx (shorthand for "diagnosis" to those who are lucky enough not to have had to deal with this in your lives), I didn't know much about Type 1 Diabetes. Nothing really! Didn't know about the complications. Didn't know you had to do much more than give a few insulin shots per day. Certainly didn't think he'd be getting four to five injections every day. Blood sugar tests? What??? He has to poke his precious little finger 8-12 times EVERY DAY? Making my son bleed 8-12 times every day. For some reason, that tugged my heartstrings A LOT.

I didn't know about the legal, school, and social issues. I didn't know we'd have to fight for his medical needs. And we are the LUCKY ones. We have a pretty supportive school district. I know people who've had to take their school districts TO COURT to make sure their kids have their medical needs covered at school.

It's a lifestyle change. A major one. For everyone.

These moments, from the medical ones to the legal ones to the emotional ones, are just difficult to face.

You can only face them a bit at a time.

But, who else am I? The dLife people are wondering, why the hell is she blathering about the publishing world, book reviews, print runs and so forth? Here is the other part of the story.

I am a writer whose first novel has just come out amid a buzz of controversy due to its subject matter. To put it bluntly, I don't write like a girl. I don't throw like a girl either. So sue me.

The novel is about three teenagers in the 1980s who form a group called The Bitch Posse. They get into a lot of trouble and are swept into a violent act. Fifteen years later, they are all in different parts of the country and are all dealing with their pasts in various dysfunctional ways. They're haunted by their crime and must come to terms with what they did.

What does this have to do with diabetes? my dLife visitors may be asking. Nothing really. Except... on my book tour, my cellphone was turned on, ALWAYS. Through each and every reading I anticipated a phone call about blood sugars going too high or too low. Low blood sugars can lead to seizure, loss of consciousness, even death. And over time high blood sugars can lead to diabetic ketoacidosis and coma and eventually death. Before insulin, kids died of Type 1 Diabetes and that's how they died. My son would have died. He was on his way. That is very clear to me now.

Normal blood sugars are 80-120. These numbers happen so rarely for us that we inaugurate a parade down the block whenever we get one. We had a 137 at bedtime tonight and I was ABSOLUTELY. THRILLED.

I heard about a 55 while on book tour. (Husband managed it perfectly. YAY HUSBAND!) And I heard about a 258. These aren't horrid emergency-state readings really. We've been in the 40s and we've been in the 400s.

FORTUNATELY, neither of these two icky BLOOD SUGAR readings happened during a BITCH POSSE reading.

But if they had, what would I have done?

I would have stopped the reading. I would have given Husband diabetes advice that he probably already knew, but that I needed to KNOW that he knew. And I would have said to my audience, SORRY FOLKS. But my child is dealing with a chronic illness. An illness that affects every moment of my family's life. So, talk amongst yourselves and I need to take this call.

Cos there is nothing more important than my son's health.

So.. are you a dLife visitor? If you are, welcome. I blab a bit about book publishing and stuff too... BITCHING AND MOANING is my forte, whether it is about diabetes or book publishing. But I do blog about diabetes at least a couple of times a week.

And if you're here because of my book... well, know that my family deals with a chronic illness every day. Diabetes has changed our lives.

If you would like to support research to find a cure for Type 1 Diabetes, there are a few things you can do. First, my dear sister and her boyfriend are riding in a bike ride in October to benefit the Juvenile Diabetes Research Foundation. The JDRF was formed by parents of children with diabetes and is among the most efficient charitable organizations in the world. It's been written up by Forbes, SmartMoney, and other publications in honor of its efficiency. The majority of money goes to research and only a small percentage to administration.

If you would like to contribute money in honor of my son you may contribute to my sister's ride (Ingrid Larson) and if you'd like to contribute in honor of my son's dear friend with Type 1 Diabetes, you may contribute to her boyfriend's ride (John Gruber). My son's little friend is exactly his same age and was diagnosed just one week after him. We live in Marin and his friend lives on the Peninsula, about an hour away. These two little boys are both so tough. They have been each other's lifelines. And his mom has been mine.

Here is the notice from my sister. You may easily contribute via a credit card. I hope you will be able to contribute to BOTH rides.

[My nephew's] current hero is Gary Hall Jr., an Olympic swimming medalist [who has Type 1 Diabetes as well] with an awesome story. He has tried out for a One-Touch diabetes testing commercial with B.B. King (although he wasn't chosen) and applied to be a children's congress delegate for diabetes. His twin sister is a tough kid too. Though she is not diagnosed, she may be at an elevated genetic risk; the causes of Type one haven't been nailed down yet. [My nephew] tests his blood levels - he doesn't like pricking himself for the blood test, but he does it like a trooper -about 8 or more times a day, and gives himself insulin injections by himself, usually into his tummy. This summer, he's being fitted with the insulin pump, which while an improvement, is still tough.

His parents haven't told him about all of the risks of growing up with diabetes yet - understandably. They are really scary. They include, along with a lifespan shortened by about 15 years, possible kidney failure and transplant, blindness, painful nerve damage, foot and skin problems, premature heart disease and amputation. A bit much for an 8 year old. The GOOD news is that medical research is really advancing in incredibly hopeful ways. JDRF is really forefront in advocating and fundraising to support that research.

"In the next five years, some $2.5 billion will be spent on type 1 research around the world, including projected JDRF funds of $500 million, industry investment, and a $750 million supplement for the U.S. National Institutes of Health, passed as a result of JDRF advocacy."

JDRF is recognized as being an absolutely stellar example of a charity organization by Forbes, Barrons, Smartmoney, Consumers Digest, the American Institute of Philanthropy, and Charity Navigator.

Here is the reason I think JDRF is so vigilant about every penny: It was founded by parents of children with diabetes, and if you get involved in JDRF, chances are, you know and love someone with Type 1.

Here is the site about the bike ride.
And here is JDRF's website.

And the donation link:

Donations to this ride are 100% tax deductible and if you donate more than $250 then the JDRF will send you a receipt for the full amount.

Another thing you may do to help in the search for a cure is to visit StemPac.com. This an amazing new political action committee begun by the man who started DraftWesleyClark.com. It's already gotten a ton of press and is growing by leaps and bounds every day. Please support this valuable research that could save so many lives, and either link to them on your blog, send in a donation, or both

And, as an altogether insignificant sidenote, if you like to read, think about reading my book. I cannot tell you that reading this book will help cure Type 1 Diabetes. It won't. Other than the fact that Diabetes is my charity and any extra money I have goes there, it is a huge and major stretch to pretend The Bitch Posse has anything to do with diabetes. Honestly~it doesn't.

BUT~if anyone on Earth wants to read a second book of mine, chances are it will have to do with Type 1 Diabetes. I wrote The Bitch Posse before diabetes tore into our lives. Now that our lives have been changed so much due to this horrid D-monster, I think I really owe that to people who deal with this disease each and every day. But that is another book... which I WILL write.

About The Bitch Posse-There are some reviews about it below. If you do not like books that deal with dark subject matter, you probably would not like it. But, if you would like to read a book that might fuck with your head a bit, check out The Bitch Posse. Or don't. It's the least important of the things I am blogging about today.

Lots of love,