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Support Comes in Many Forums

Jan Chait

April 22, 2008

WooHOO! I had my first "gusher" the other day! It was about time: I’ve been pumping insulin for more than nine years now and was feeling a bit left out. And, frankly, jealous. Why, one person I know had a gusher on the first set change.

It was akin to years ago, when I would hear people talk about squirting blood across the room when they pricked their finger to check their blood glucose—and I hadn’t managed to accomplish that. Yet.

A gusher occurs when blood wells up and starts pouring out of the site when you take an infusion set out. In my case, it was running down my stomach, soaking my skivvies and traveling on to my leg, where it was dripping onto the floor.

Why does it happen? Who knows? One theory is that you nick a capillary when you insert the infusion set and there’s a buildup of blood. When you take the set out, the dammed-up fluid comes out with it.

I suppose some people might be a bit fearful if they suddenly began to bleed profusely, but I was more concerned with saving my carpet. Luckily, there was a napkin on my desk and I used that to stem the flow as well as I could while searching my desk and trash can for a tissue, paper towel, piece of wadded-up newspaper—anything until I could get to the bathroom without leaving a trail behind me.

“Any intelligent person would be frightened if that happened,” I can hear some of you say. Thanks to a diabetes support group I belong to, however, I’d heard plenty of “gusher” stories and knew there was nothing to be concerned about.

It took me a while to find the right support group for me, and it happened to be online. Before that, I had been frustrated at some, kicked out of another, and not had my questions answered by yet another one.

Frustrated, because…well, I knew more than the other people in my local diabetes support group.

When I finally got sent to a C.D.E. and started to learn about diabetes, I began to devour books on the condition in an effort to learn all I could. I found that knowledge meant freedom: Freedom to fit diabetes into my lifestyle rather than being crammed into a box labeled “diabetes” with all of its “don’t’s” and “can’t’s” and “thou shalt nots.” I no longer feared diabetes because I knew how different things affected my blood glucose levels and that I could lower my risk of complications rather than sit around awaiting their arrival.

“Perhaps,” I told myself, “this group is not for me because it doesn’t have a lot of people in it.”

So I took myself off to a group in a larger city where, surely, a larger mass of people would have more-knowledgeable people in it whom I could learn from.

Nope. In fact, that’s the one I got kicked out of. The fateful meeting took place on a day when the weather was so bad I was the only one who made it there. Mind you, I had driven about 80 miles and nobody within the city had bothered to drive even 5 or 10.

“Jan,” I was told by the C.D.E. running the group, “this class is really for newly diagnosed Type 2’s who don’t know much.”

So I didn’t belong in a support group for Type 2’s. OK. There was another support group for Type 1’s, but I couldn’t attend that one because I am Type 2.

After I began using an insulin pump, I found out there was yet another group in the city for pumpers. I asked about it and was told the social worker at the clinic I went to would tell me when it met. She didn’t, despite my asking several times. I don’t know why. Perhaps she believed that Type 2’s shouldn’t be using an insulin pump but, rather than tell me that, she avoided answering my question. Since I was the clinic’s first—and, at the time, only—Type 2 pumper, I guess the folks there didn’t quite know what to do with me.

In the meantime, I searched around on the Internet for an online group. Back in the day, there weren’t a lot of choices. One I tried was full of misinformation (but it led me to a private group of knowledgeable people—some of whom I became friends with and met in real life). Another was a “toe-the-line-or-else” group. (Definitely not me.)

In short, after I began using an insulin pump, I found my group: insulin-pumpers.org. Parents of children who have diabetes often find that childrenwithdiabetes.org is the perfect group for them. Continuous glucose monitor (CGMS) users can now find their way to one of several groups that have sprung up in the past year or so. People who are unsure of themselves might find a group moderated by diabetes experts, such as the ones at joslin.org (which even has a group for teens), helpful. Even this forum offers support, whether from the bloggers or from the comments sections.

I hope you’ve found a diabetes support group that fits your needs, too, whether it’s your local group or one that’s online. One where you can ask questions and learn from the experts—those who have gone through the same type of situations.

Who else will tell you what…um, frolicking…can do to your blood glucose levels, what to do with your pump while you sleep, where to find the coolest medical identification bracelets, how to trick your CGMS sensor into lasting longer, or even let you know that gushers are no big deal?

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