In my last post, I discussed how my insulin pump had died and how I had begun taking multiple daily injections while deciding what the next step would be. I wrote about the things that were fun about going back on injections: an extra pocket, no tubes, and I could disrobe with the grace and take-no-prisoners-confidence that any insulin-producing man exudes.
So, was it really just that not having a pump offered some simple conveniences, or was there something else going on? (Of course there was something else going on...) I think that what I really liked about not having the pump, and especially about not having the CGM, was that I got to pretend that I wasn't a diabetic. I realized this while talking to a member of my Diabetes Support Group*, who takes multiple daily injections. She said that she was only diabetic when she was shooting up, testing her blood sugar, too low, or too high. Hearing that made me realize how accustomed I had become to the hum of constant "systems checks" in the background of my mind:
"This is Central Command. All units report in."
"Central Command, this is Mouth. I am dry. Repeat, I am dry."
"Mouth, this is Central Command. Drink water and await further Orders. CGM, report in."
"Central Command, this is CGM. Glucose is six-point-seven, trending slightly upward."
"CGM, this is Central Command. Continue Monitoring Glucose (get it?) and await further orders. Hands, do you copy?"
"Central Command, this is Hands."
"Hands, commence finger-stick reconnaissance and report back."
"Central Command, this is Hands. Commencing finger-stick."
.
.
.
"Central Command, this is Hands. Finger-stick reads Eleven-Point-Niner. Repeat, Eleven-Point-Niner."
"CGM, this is Central Command. Re-calibrate Eleven-Point-Niner. Repeat, Eleven-Point-Niner."
"Central Command, this is CGM. Re-calibrating Eleven-Point-Niner. Repeat, Eleven-Point-Niner. Sorry my reading was off, Central Command."
"CGM, this is Central Command. Noted. Pump, this is Central Command, do you copy?"
"Central Command, this is Pump. Basal rates are at Zero-Point-Eight units per hour. Insulin on board is Zero-point-three units. Awaiting orders."
"Pump, this is Central Command. Deliver Two-Point-One units of Insulin. Repeat, Two-Point-One units of insulin."
"Central Command, this is Pump. Delivering Two-Point-One units of Insulin. That's Two-Point-One units of insulin."
And on, and on... That's what happens when you have to take control of what should be an automatic reflex. What if you had to think about breathing, pumping your blood, or blinking? So it was nice, I guess, having a little bit of quiet. Getting to pretend that my body could just take care of itself, automagically. Of course, my blood sugars were not as stable, and without the CGM, it took me much longer to realize when I was high. Or low...
So, I've decided the dream of getting to play non-diabetic just isn't worth the dream of having more stable blood sugars and more knowledge about what's happening at any moment in my body. The dream is over. I'm currently using the loaner pump minimed sent me (to their credit), and I'm in negotiations with them, Sun Life (my extended health coverage), and my endocrinologist to get a new pump & CGM. Minimed Veo, here I come. I guess I'll also have to give up, for the time being, on the dream of having a pump with a color screen!**
* "The Injectors" meet the first Monday of every month at 7:00 p.m. in the Arbutus Room at Vancouver General Hospital. These are some of the best people ever. In just a handful of meetings, they were instrumental in organizing much of the emotional chaos that followed 20 years of isolation as a diabetic.
** It sounds like I'm complaining. I guess I am, a little bit. BUT, it's only because I'm spoiled. I remember what it used to be like when CGM didn't exist, testers took 2 minutes and were wildly inaccurate, pumps had to be worn in backpacks, the exchange diet ruled, and the effect of long-acting insulin could change from day to day. I'm extremely grateful for what we, as diabetics, have. The Veo is actually a miracle.
Friday 13 April 2012
Monday 27 February 2012
Pump Mortuus Est.
Pump meus mortuus est. My insulin pump is dead.
And, it's out of warranty.
I upgraded from my Minimed 512 to the Medtronic Paradigm REAL-Time with Continuous Glucose Monitor (CGM) in February 2007. The CGM tests my blood sugar every 5 minutes and sends it, via radio frequency, to be displayed on my pump. If I get too low or too high, an alarm goes off. This feature is the only reason I upgraded. The CGM helped me sleep a little bit better after suffering the first hyperglycemic seizure of my adult life. Although I had a few seizures as a kid and teenager, this one was somehow much scarier. Much more real. This seizure was different because it gave lie to the sense of security I had developed after a few years of stability under the pump, and also because this time I could see the horror of a seizure clearly reflected in the face of my girlfriend at the time, who watched it happen.
Since that time, the pump has been by my side (get it?!), and I have used the CGM feature nearly continuously (get it? continuously? get it?!). CGM changed the entire way I viewed my blood sugar. For years I would try to get a picture of what my body was doing using finger-stick testing only. Now, I could see what it was doing. Now, my blood sugar was not just 'high' or 'low' or 'just right'; it had rates of change, too. Sometimes the arc of my blood sugars was steep, sometimes it crept up slowly. I had gone from a 1-dimensional world of blood sugars (i.e., I only observed my blood sugar at a certain point) to a 2-dimensional world (I observed my blood sugar as a continuous series of points in time). I loved it.
And, I hated it. Those alarms for highs and lows are as annoying as they are helpful, especially when your blood sugar is not really as high or as low as the CGM thinks it is. There's nothing quite like being needlessly woken up every hour by a frantic little vibrating machine attached to your leg to put you in a sour mood. And you're trapped: There's no easy way to correct the CGM when it's mis-calibrated, and disabling the alarm altogether would defeat the purpose of the CGM. (What if you really did get low later in the night?) Still, the CGM saved me more than a couple of times, and I'll swear by it---warts and all---for the rest of my days.
Beyond that, Minimed did not seem to care very much about usability. The interface was annoying to get through; in an iPhone world, the pager look and feel fall very short of the standard we've come to expect when interfacing with machines. I get where Minimed is coming from: they're making a product to keep me alive and don't have time to worry about bells and whistles. On the other hand, this is a product like any other, and I'm a customer. Right now, Minimed has a monopoly in the US on CGM-enabled pumps, so they can afford to ignore issues about usability. But, if they don't start producing a product diabetics like to use, some company or another certainly will. I let my pump go out of warranty hoping that it would last long enough for the Animas Vibe, approved in the EU, to hit the North American markets. Unfortunately, the coveted Vibe is a long way from being available, so it looks like I'll be getting the newest version of the yesterday's pump.
In the mean time, I'm revisiting injections, and what a trip it's been. When I first started using a pump, it was because I was taking 4 types of insulin (NPH, Ultralente, Regular, and Humalog) at least 6 times a day (including a daily injection at 3:00 a.m. to address morning highs). It was the Frankenstein monster of diabetes management. The basal routine of the pump simplified that in a wonderful way. Since I started the pump, however, better long-acting insulins with no peaks, such as Lantus, came out. So, I've been using Lantus and Humalog injections for the last week or so, and my blood sugars are not much different than they were with the pump. I'm most aware of the difference between using a pump and using injections---and this came as a surprise to me---when I am taking my pants and underwear off.
That's right.
I had no idea, but I have developed a habit of pulling my pants and underwear away from my body at the same time that I pull them down, because if I didn't (if I just slid them down my legs like everyone else), then they would rip the pump right out of my thigh. I didn't notice I did this until I caught myself trying to avoid ripping out of my leg something that wasn't even there.
My pump is dead. But I feel it there. I feel it vibrating in my pocket, trying to tell me something important. I reach for it when I am about to eat a snack. I have phantom pump syndrome. But it's not there. It's dead.
And, it's out of warranty.
I upgraded from my Minimed 512 to the Medtronic Paradigm REAL-Time with Continuous Glucose Monitor (CGM) in February 2007. The CGM tests my blood sugar every 5 minutes and sends it, via radio frequency, to be displayed on my pump. If I get too low or too high, an alarm goes off. This feature is the only reason I upgraded. The CGM helped me sleep a little bit better after suffering the first hyperglycemic seizure of my adult life. Although I had a few seizures as a kid and teenager, this one was somehow much scarier. Much more real. This seizure was different because it gave lie to the sense of security I had developed after a few years of stability under the pump, and also because this time I could see the horror of a seizure clearly reflected in the face of my girlfriend at the time, who watched it happen.
Since that time, the pump has been by my side (get it?!), and I have used the CGM feature nearly continuously (get it? continuously? get it?!). CGM changed the entire way I viewed my blood sugar. For years I would try to get a picture of what my body was doing using finger-stick testing only. Now, I could see what it was doing. Now, my blood sugar was not just 'high' or 'low' or 'just right'; it had rates of change, too. Sometimes the arc of my blood sugars was steep, sometimes it crept up slowly. I had gone from a 1-dimensional world of blood sugars (i.e., I only observed my blood sugar at a certain point) to a 2-dimensional world (I observed my blood sugar as a continuous series of points in time). I loved it.
And, I hated it. Those alarms for highs and lows are as annoying as they are helpful, especially when your blood sugar is not really as high or as low as the CGM thinks it is. There's nothing quite like being needlessly woken up every hour by a frantic little vibrating machine attached to your leg to put you in a sour mood. And you're trapped: There's no easy way to correct the CGM when it's mis-calibrated, and disabling the alarm altogether would defeat the purpose of the CGM. (What if you really did get low later in the night?) Still, the CGM saved me more than a couple of times, and I'll swear by it---warts and all---for the rest of my days.
Beyond that, Minimed did not seem to care very much about usability. The interface was annoying to get through; in an iPhone world, the pager look and feel fall very short of the standard we've come to expect when interfacing with machines. I get where Minimed is coming from: they're making a product to keep me alive and don't have time to worry about bells and whistles. On the other hand, this is a product like any other, and I'm a customer. Right now, Minimed has a monopoly in the US on CGM-enabled pumps, so they can afford to ignore issues about usability. But, if they don't start producing a product diabetics like to use, some company or another certainly will. I let my pump go out of warranty hoping that it would last long enough for the Animas Vibe, approved in the EU, to hit the North American markets. Unfortunately, the coveted Vibe is a long way from being available, so it looks like I'll be getting the newest version of the yesterday's pump.
In the mean time, I'm revisiting injections, and what a trip it's been. When I first started using a pump, it was because I was taking 4 types of insulin (NPH, Ultralente, Regular, and Humalog) at least 6 times a day (including a daily injection at 3:00 a.m. to address morning highs). It was the Frankenstein monster of diabetes management. The basal routine of the pump simplified that in a wonderful way. Since I started the pump, however, better long-acting insulins with no peaks, such as Lantus, came out. So, I've been using Lantus and Humalog injections for the last week or so, and my blood sugars are not much different than they were with the pump. I'm most aware of the difference between using a pump and using injections---and this came as a surprise to me---when I am taking my pants and underwear off.
That's right.
I had no idea, but I have developed a habit of pulling my pants and underwear away from my body at the same time that I pull them down, because if I didn't (if I just slid them down my legs like everyone else), then they would rip the pump right out of my thigh. I didn't notice I did this until I caught myself trying to avoid ripping out of my leg something that wasn't even there.
My pump is dead. But I feel it there. I feel it vibrating in my pocket, trying to tell me something important. I reach for it when I am about to eat a snack. I have phantom pump syndrome. But it's not there. It's dead.
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