Category Archives: pumping insulin

wearing an insulin pump (and not hating it!)

Wearing an insulin pump (and not hating it!)

After 39 years of taking shots of insulin, usually 3-5 times/day, and having better and better blood sugars, two years ago I heard something that finally made me consider going on a pump.  My then CDE said “you’re using a hammer for a job that requires a feather.”  What she meant was that because I take very small amounts of insulin, and I’m very sensitive to it, that even with an insulin pen that doses half units, I’m still not achieving the fine tuning that could give me better results in both the short term and long term.

So that shifted my thinking, but it has taken another two years of thinking, researching, talking – still resistant to having something (else) attached to my body 24/7. I did start using the Dexcom CGM, which I mostly love, and which has helped me see the direct benefits of being connected, wearing a device. I still don’t enjoy wearing the plastic transmitter and sensor taped to my thigh (my favorite spot). I don’t like how it looks, don’t like how my partner is afraid of getting close sometimes for fear of tearing it off when the tape is peeling (which does happen), don’t like the cost…

However, the benefits of being able to watch my blood sugar rise and fall, tracking it like I imagine a surfer watches the waves, is huge. I can SEE, and correct, within an hour or two. If I’ve miscalculated my insulin dose with a meal, I don’t wait til the next meal to discover I’ve been over 200 for hours, and need to wait to eat, or deal with going higher if I don’t… Or if I’m starting to head low, I can catch it at 80 and have a small snack, rather than testing and discovering I’m in the 50s and can’t function well as I wait for my blood sugar to climb up and my brain to come alive again.

dexcom, CGM, continuous glucose monitor,

Dexcom CGM, 6/28/15

Now that I’m 51, living with type one since age 12, I’m even more focused on living well for the rest of my years. I want to continue to feel well, be able to do pretty much whatever I like without diabetes stopping me. So far I have no complications, other than some minimal background retinopathy, which is so small there’s nothing to do about it. However, I’d like that to go away completely. I’d like to be right that my risk for heart disease, etc, is no greater just because I have type one, since my A1C is excellent. I also eat as much organic, whole food as possible, take supplements that I research that feel right (i.e. fish oils, vitamin D, spirulina and chlorella in my smoothies…), pay close attention to what my body is telling me. I also am a Reiki Master and do energy work as my vocation, so I receive lots of healing energy each day, and know that is another aspect of my good health. I attribute my healthy eating and lifestyle at least in part to diabetes (and in part to my mother and my partner for being such great teachers and examples), and for that I’m grateful.

So now I have health insurance again, and a wonderful CDE (diabetes educator), and was able to receive an older model Medtronic pump donated through an amazing organization, American Board for Child Diabetics, that is set up to financially support children with diabetes. They have expanded their generosity to adults like me, who have benefitted as well! (I would have had to pay thousands of dollars even with health insurance to receive a pump otherwise, and am still paying hundreds more per month just for supplies…)

(Some of you may remember my brief foray into a pump, with a gifted, used Omnipod, which I now think may have been just too old to be working correctly. The basal and bolus rates I used were similar, but with terrible results. Mostly, the pods were uncomfortable/painful, and it just didn’t work for me.)

I didn’t expect to see improved BG numbers for a few weeks or longer with the pump (see above). There’s usually a lot of tweaking of basal rates and insulin:carb ratios initially, but somehow, with the help of a great trainer and my CDE, I’ve started out very smoothly and my numbers are somewhat better already it seems.

From my experience wearing the Medtronic 722 in the first couple of weeks…

Downsides: 

  • Wearing/carrying a pump, about the size of a deck of cards, in my pocket is not that comfortable. It just doesn’t fit that well anywhere (including my bra, where a lot of women like to wear theirs).  I’m hoping that when I get the smaller, correct, size pump soon, that will help a bit (that’s a whole other story about the customer service at Medtronic). I am waiting for a clip so I can wear it on my waistband, rather than in a pocket. I have ordered a “tummietote” belt, a soft tubular belt that has folded pockets to wear and carry devices like a pump, cgm, phone… The issue I was most concerned about – what to do with it while sleeping has actually been minor. It just stays on the bed, even when I turn over, and I don’t notice it until I wake up in the morning.
  • I still have to make decisions for boluses, based on what I see on my CGM, and on all the variables I am aware of – exercise, stress, glycemic index of foods, etc. (but see the Bolus Wizard below…)
  • there is about 24 inches of tubing connecting the pump to my body, and that’s not a huge hassle, but it means tucking it in my pocket or my waistband every time I use the bathroom, so it’s not going to catch on things.
  • on that note, there’s the issue of getting dressed and/or not wearing clothes, and having to hold the pump or find a place to set it down where it won’t fall and yank on the tubing. a bit awkward.
  • replacing the infusion set and tubing every 3 days. It takes time, a lot of trash, and so far I’m throwing away some insulin each time because I haven’t got it my 3 day totals quite set.

Upsides:

  • I’m starting to see some better blood sugar numbers, especially at night. It’s SO nice to start the day with a good fasting sugar! Makes the whole rest of the day go so much more smoothly and easily.
  • I can eat one square of dark chocolate, or half a nectarine, and take tiny amounts for a bolus, like .3 units. I used to only eat a bite if I was already running on the low side, or only eat foods with no carbs, like cheese if I needed a snack.
  • the “Bolus Wizard” is actually quite helpful. When I’m going to eat, my new meter sends my current blood sugar to the pump, (yes, I still need to test with a meter, even with the CGM) then I enter the carbs I’m going to eat. The pump factors in how much insulin is still active based on the timing of the last bolus, and suggests how much to bolus. It is based on the insulin:carb ratio we put in, and so far it’s working surprisingly well.
  • I like being able to just pull the pump out of my pocket and give myself insulin wherever I am. I’ve always been comfortable taking shots in public, but was discreet. I’d often test and draw up my shot under the table at a restaurant, or walk a bit away from people to actually inject. This feels a bit more free, and that makes me more likely to stay on top of taking insulin when I really need it, rather than waiting for a convenient place.

Pump Update

pump, insulin pump, tummietote belt, medtronic, wearing my pump,

wearing my pump in the tummietote belt

It’s now been another week and I’m getting more and more comfortable with wearing and using the pump. One big improvement was getting the Tummietote Belt. It works so much better for me than keeping the pump in my pocket, and even makes getting dressed easier… very happy about this!

Day 4 – “Changes” for Diabetes Blog Week

“Today let’s talk about changes, in one of two ways.  Either tell us what you’d most like to see change about diabetes, in any way.  This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing.  OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes.  Were they expected or did they surprise you?”

As I’ve been reflecting on this topic, for Day 4 of Diabetes Blog Week,  I’m finding myself angry, which is rare for me, but perhaps not unusual when I spend more time thinking about diabetes and emotions.  I’m angry because I started to come up with a list like many others have, for changes I’d like to see related to diabetes. Things like:

  • an artificial pancreas/closed loop system, so I could wear multiple devices and not have to check blood sugars all day and be constantly monitoring, adjusting, thinking  about my blood sugars.
  • better access to all devices and tools for ALL people with diabetes, all around the world.
  • better understanding of what it’s like to live with diabetes, greater compassion from those who don’t have it.

And that’s when I started to feel angry. Why am I (and many others) asking for so little?! We’ve been told for decades that a cure is only about 5 years away. We’ve been hearing that so long that’s now a joke in the diabetes community, which is disheartening. I think with the excitement that’s come from the #wearenotwaiting community, those who are taking the technology into their own hands and speeding up the closed-loop system’s progress, many of us have given up on, or set aside, the promise for a cure.

I don’t want to change the way I live with diabetes by wearing multiple devices attached to my body, with tubes, batteries, alarms, the need to add insulin and other hormones. I will, and will be grateful for the opportunity to have excellent control with little or no effort! Sign me up as soon as this is safe, affordable and available!

artificial pancreas, bionic pancreas, wearenotwaiting, CGM, insulin pump,

recent version of the artificial pancreas

But what I really want to see, the change I’d really like, is for my body to no longer have diabetes – to have perfect blood sugars, be able to eat what and when I want, and mostly, to not have to think or worry about if I’m low or high and take the time and energy away from other things I’d really like to be doing. I’m angry that I rarely dare to hope for this now, that I can’t quite envision this as a reality, and that I don’t hear many others speaking of this either. Perhaps with the excitement of these new technologies so close and so tangible, it makes sense that we’re focusing on that, but I don’t want to start to think that is the best change we can foresee when it comes to diabetes.

2nd Pod – Quite an Adjustment

So, a quick update. I started my 2nd pod a day early, for two reasons.  I used insulin from a batch of pens that I knew to be questionable, (why? trying to use up my least favorite first… seems silly now!) which seemed to be very slow-acting, sometimes 2 hours to start, when Humalog is supposed to start within 30 minutes.  Now I’m trying insulin from a box of cartridges that I know has worked well very recently.

Also, the site I chose was less than optimal. I forgot that I had tried and not liked this same area for my Dexcom CGM sensors – just above the hip, towards the back. Also, unfortunately, I placed it thinking it was high enough to be above my waistline, but ended up placing it right where my pant’s waist hits, so it was uncomfortable with clothes on, and uncomfortable at night sleeping on that side as well. Plus, there was redness and irritation in the area where the tiny plastic tube stays under the skin dosing the insulin. I forget the technical name for that…

diabetes, insulin pump, omnipod, type 1 diabetes,

post pod #1

So, on to pod #2, placed on the back of my arm, which already feels much better. Just sitting down on the couch is comfortable again! My blood sugars have been a bit all-over, but I think I’m starting to get a handle on this new system. Last night my CGM woke me with a low, and it went off 3 times in 45 minutes (and this after eating 2 of my 15-carb cookies – whole wheat fig bars from Costco, my favorite nighttime low treatment, because I can eat it in 2 bites). I realized this is what the temporary basal rate is for! So I changed it for 3 hours, and woke up about 5 hours later around 140, which I was happy enough with for today.  The first night I’d had 3 separate lows, so this was an improvement.

insulin pump, omnipod, type 1 diabetes, pumping insulin,

Pod #2 – back of my arm. These are big!

insulin pump, omnipod, type 1 diabetes, pumping insulin,

Trying the arm this time!

I still woke up today feeling frustrated, like using the pump may not be worth it, but I’m going to give it a few weeks at least, and see how it goes.

I’m still having doubts about the superficial, yet real, aspect of having this unattractive plastic pod stuck on my body, and how uncomfortable I feel about that. This is for another post coming soon!

Why I’m Here

Today, after 39 years of taking shots of insulin, I finally had the courage to start using a pump. It felt like a good day to start a diabetes blog too.

After years of thinking about it, researching, listening to doctors, diabetes educators and friends, and reading about all the different pumps, I was given an Omnipod, (the only tubeless pump) along with boxes of expired “pods” (that you wear on your body and which give you the insulin throughout the day) and so decided to start with this since it’s free and I have it in my hands. I met with my fabulous CDE Michelle yesterday, did the best estimates for what to start my basal dosage, and put on my first pod this morning. (I watched a youtube video of how to do it – I love the internet!) It was unnerving though, left me feeling shaky and like jello, and also near tears.

My whole identity feels like it’s changing with this new way of receiving insulin. It’s something I’ve resisted for decades, hating the idea of being attached to something 24/7, and not wanting to wear another device attached to my body, along with my Dexcom CGM (continuous glucose monitor). I LOVE the information that I get from the CGM, but do not like having plastic parts.  For one thing, it doesn’t feel sexy. And yes, that matters.

So, after 7 hours of pumping, how’s it going you wonder? Not very well at first. I finally ate breakfast around 4pm, because it took resetting my basal, and 2 boluses to get my blood sugar down to below 190. I’m still not sure if the basal was just too low, or took a while to kick in, or if this Humalog is from a box of pens that never has worked well, with very slow start times and less effective overall. (I’m using the insulin from pens I have on hand.) I’ll have to give it another day to see the bigger picture. Fortunately, I’d chosen to start on a day I didn’t have clients and could be at home by myself all day, easing into this new world.

And now, it seems to be working ok. I drank my breakfast smoothie, only rose about 30 points, and have been holding steady around 150, so this part is great. It’s a bit weird having this additional thing sticking off my left side, I’ve almost bumped into it a couple times turning corners and sitting back in a chair, and I’m hoping that I can sleep comfortably on this side. And apparently, I stand with my left hand on my hip often! I am only now realizing what a common stance that is for me, now that I can’t put my hand there.

But I keep reminding myself this pod will only last 3 days, not like the 2 week commitment from a CGM placement and how each new sensor placement has a steep learning curve the first few days. I put it on my upper thigh and switch legs each time, so I have to re-learn every couple of weeks which pant leg I need to pull down carefully while using the bathroom!

I am hoping that learning to use the pump will be the equivalent of learning a new language, and I’ll at least get the benefit of exercising my brain in new ways from this whole endeavor. I really don’t have a desire to learn another language, something my mom did a few years ago, to keep your brain young and prevent dementia. Let’s hope this will do the trick instead.

 

Dexcom, CGM, Omnipod, pump, Verio, blood sugar, diabetes

my current diabetes technology/tools – including the gardenia just picked from the garden

So why now, after 39 years and really good control with shots of insulin? I finally decided to go on the pump because I take such small amounts of insulin, only about 3 units with most meals, and even with a 1/2 unit-dose pen, still couldn’t do the fine-tuning I need for better blood sugar control.  My last CDE told me I’m “using a hammer to do the work of a feather”, with shots vs the pump. Hearing that phrase was the first time I seriously considered the benefits for me, and it has stuck with me. I’m willing to see how it feels to have the lighter touch of a feather.

Another reason – I love technology. I am the most excited I’ve been in all these 39 years, about the progress being made to improve our lives with diabetes.  I can see that the bionic, or artificial, pancreas is coming, very soon, (more on that later) and I know I want to be ready for that. That’s another reason to start now, getting used to these new tools, and wearing/carrying more diabetes stuff.  And if they come up with a stem cell or other cure soon, I’m totally prepared for that too, any day now!

I hope you’ll join me on my journey and connect with me here, with comments, questions, links to your blogs… That is the reason I’m doing this blog – to meet more of the DOC, to share stories, learn from each other and not feel so alone. Thanks for being here!

P.S. My blood sugar is excellent going into dinner, 106! So let’s see what happens tonight…