Last week I offered to “open the kimono” by answering pretty much anything (within reason) that readers cared to ask. Looks like in response, I got a couple of “nuts & bolts” questions on day-to-day D-stuff, along with one call for my perspective on the Big Picture. That one will take some soul-searching, so let me start with the easy stuff:
Reader Q) As a fellow OmniPodder, how do you manage scar tissue? I rotate my sites when changing the pod, but still occasionally hit scar tissue. I would love to hear your thoughts.
A) The fabulous CDE Gary Scheiner is the one who finally solved this issue for me. I now rotate between six different spots — left/right upper arm, left/right abdomen, and left/right thighs. Each of those spots get two turns in a row. In order to be absolutely sure you’re not overusing the site, you keep the old pod on while applying the new one. For example, on your left-side stomach: you first use the spot closest to your belly button, then the next pod would go right next to it, but closer to your hip. This seems to help me a lot with avoiding scar tissue — although everyone hits a “bad site” now and then.
Q) Please answer about (worrying over) your kids. I have one PWD friend who tests his daughter’s BG once a week, another PWD friend who tests her kids once a month, and I’ve tested my non-diabetic kid maybe 3 times (he’s 17 months old) when he’s been sick. I also keep my eyes open for studies to enroll both kids in — but strongly hesitate to have my 17-month-old tested for anti-bodies now.
A) My husband and I have talked at great length over the issue of having our girls tested or not. We decided against it, because we feel it would only be a great source of worry at this point. The tests available now can only determine a person’s “odds” or percentage risk, of developing the disease. So if we were told our kids had a 40% or a 60% chance, how would that help us? Other than to make us paranoid?
Thankfully, according to the authorities, a child with a first degree relative (sibling or parent) who has type 1 diabetes, generally only has a 5% (1 in 20) chance of developing diabetes.
Of course, we know exactly what to look out for in terms of symptoms, and every time somebody gets the flu around here or is unduly thirsty, I do shudder.
Q) I know you didn’t always do this and it appears that your career, opportunities and personal life have taken a major turn since your diagnosis, stuff like D-blogging, the Design Challenge, advocacy, the different groups and panels you are on, your book, DiabeticConnect, friends you have made, etc.
Do you feel that your diagnosis was actually good thing overall for you personally or do you feel more like you are just making the best of a bad deal? As a follow on, 8 years ago what were you thinking you would be doing now?
A) Wow. Big Question. My new life in a nutshell, ay?
Before I became diabetic, I was working as a freelance writer covering new technologies for both consumers and businesses here in Silicon Valley. (I had quit my full-time job years before when I became a mother.) As many of you know, I was diagnosed 5 months after my third baby was born — laid up in the hospital with an infant, and 3-year-old and 5-year-old at home. Ugh. The whole first year is a blur of exhaustion and insulin overdoses (my first endo had my needs all wrong).
Then one day in late 2004, my husband came home from a “New Media” conference and encouraged me to start something called a “blog.” About diabetes? Really? Who would read that?
But people did. They came forward in unexpected and later unprecedented numbers. As I began to attend D-industry events and get involved in advocacy efforts, my whole world seemed to fill up with this cause. I gradually gave up my “day job” covering IT and started doing the blog + online community + speaking, etc. full-time. (See this Newsweek article btw, on “my story.”)
Needless to say, I found myself in the middle of a Social Media Tsunami, with new health blogs and online networks crashing onto the scene daily. I now also do some consulting along with my husband/partner in the “Health 2.0″ (consumer health technology) and Health Social Media arenas, including most recently, helping Roche Diabetes develop the D-Social Media Summit events.
I’ve met so many amazing people whom I consider the real heroes of survivorship… I feel that I’m just along to cover the action.
Eight years ago, did I think this is how my life would turn out? Absolutely not. I figured I’d be doing something interesting and hopefully challenging that involved writing, alongside bringing up my daughters. But I never imagined that the work would TRANSCEND WORK.
By way of explanation, allow me to digress a moment: I was delighted to meet Ed from Ring the Bolus blog at the Health 2.0 conference last week. He’s moving out to San Francisco to take a job with the health-tech startup Keas (where I’ve helped develop diabetes programs). He explained to me how he used to work in finance. But since his sudden diagnosis with type 1 in his late 20′s, he suddenly had the overwhelming urge to change his career, “to do something meaningful!” he said. Amen.
What I do on this blog, and in the D-community at large, means more to me than any “job” ever could. It is so entwined with my own life and struggles with this illness that I feel like if I ever stop, I will surely go down with this ship.
So am I making the best of a bad deal? Yes, I am.
Yet has this diagnosis been a positive thing in many ways? Yes, it has.
Would I say no to a cure if it came knocking? Hell no.
In the meantime, my greatest hope is just to help others keep on keepin’ on with this incredibly high-maintenance illness.