Whenever people see me taking shots with a trusty syringe straight from my bottle of insulin, I get stares. Not just from those without diabetes, but many from those with diabetes. Everyone wants to know, why don’t I use an insulin pump?
The easy answer is expense. The real answer is it’s not safe for me.
Insulin pumps have been around for a while now. They’re the greatest thing since the invention of insulin if you ask many diabetics. And they do great things. Basically the pump had a little vital (reservoir) filed with short acting insulin and you can set different rates (basal rates) for the insulin to be released into your body via a tube (without a pump you take an inflexible amount of lung acting insulin to act as your basal). This means your body gets insulin maybe a little more like what sometime without diabetes would have. Then you have it push a little more into your system (bolus) when you eat to cover the carbs and keep your body functioning. You can turn down the basal if you might go exercise so you don’t end up with a low blood sugar or increase the basal rates when you’re sick and your body needs a bit more insulin. Some have connected their pumps to their continuous glucose monitors (CGMs) which can almost make things seem like a make shift pancreas (though in reality is still far away from any “normalcy” of a nondiabetic functioning pancreas). Not to mention, it’s much more discrete than pulling out a syringe.
There are a ton of benefits to being in the pump. And back in 2004, I joined the pumpers with the help of financial assistance from a nonprofit organization. I was so excited to get on the pump and have a bit more freedom and the promise of better control. At that time, I couldn’t understand why another diabetic buddy shunned the idea of ever getting on one. Though her reasons were different from mine, my mind changed over the years about the pump craze.
I don’t know exactly how or when it happened, but the pump started to interfere with my mental health early on. I resented always being attached to a beeper-size device vis a tube. It got caught on things, it was hard to wear under a dress, it broke down at times I really needed it and made me sick, I had to think about it 24/7/365, and honestly it made things awkward when I dated. But I did like the control it afforded me.
Then as things progressed I realized that with much more control at hand I could use it to start changing my basal rates to promote my eating disorder. I won’t explain how because I don’t want others to follow suit, but the pump became an enabler in some ways.
And finally, at the end, in April 2010, I started using it to overdose on insulin during suicide attempts. I could bolus a lot all at once by the touch of a button.
That’s when my doctor and I decided to put away the pump. Psychologically I couldn’t handle it.
I could still overdose on insulin and have without a pump because I still had vials of insulin at the ready. But for years I was kept safe from this in a way I could never have been with a pump. In October 2011, I had another harrowing experience after which my doctor and I came up with an inventive plan to keep me safe. Basically, he held all my short acting insulin. I could keep my long acting (less risk there). But I’d come in once or twice a week as needed to fill up a reservoir (I had them left over and they can act as mini vials) with just enough insulin to last me a few days. Not a full reservoir. And I’d exchange needless, which they also held on to so I couldn’t cheat and store up insulin on my own.
Yes, it was inconvenient. Yes, using the same needle over and over for up to a week at a time could get painful. Yes, I could and still did restrict insulin as part of my diabulimia. But I was safe and I stayed out of the hospital for mental health issues for the longest I ever have – 3.5 years.
The amazing part was that this doctor treated me pro bono. I had no insurance (thus affording supplies for one would be out of the question anyway). Yet he and his staff invited me in every week as many times as I needed (without appointment I might add) and nurse Julie would grab my insulin out of their fridge and watch me draw it up and exchange needless. And even more importantly ask – how are you? And in a weird way provided a family for me that gave me the emotional support when must needed (I knew and loved everyone in that office – all the staff and the other doctor’s, though they didn’t all know 100% what was going on with me, they were a part of my life.
It didn’t take but a few minutes every week and a friendly smile but it saved me.
Unfortunately I don’t have that safety anymore. When I qualified for disability, I was able to get Medicare and his office didn’t see Medicare patients, so I had to find a new care team. But no one in Austin or elsewhere could compare. No one could offer this level of care. And no one would ever take on the responsibility for my insulin (mostly citing scope of practice issues).
There’s the hope I can find a solution to come close to the safety net I once had (nothing will ever replace that office though). Recently someone told me about the kSafe (originally meant to keep your hands out of the cookie jar) which might be an option. And I see my therapist and at least 1 of my 15 providers a week so I’m checking in with people like I used to with Julie. So in a way I’m trying to make things work without them. But it’s not the same and never will be. Yet in the end the best decision and the one I can maintain is not wearing a pump.
If you go online you’ll see so many people extolling the virtues of life on a pump. But for me life on a pump is no life at all.
I couldn’t afford to go on a pump now even if I wanted to. And I don’t want to. While I still can OD on insulin with or without a pump, a pump psychologically it’s still too much for me to handle. I have the choice to not be connected to tubing right now and I’d rather take that choice and continue to shoot up (insulin) old school when I’m high (hyperglycemia).
Note: If you ever hear Marc Katz speak about doctors “getting it” it comes from our discussion at MedicineX of the doctor in this post. More on that another time. This doctor and his nurse and staff got it in a way I don’t think I’ll ever experience again. They are what every provider should hope to be.