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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.

Day 3 – “Clean It Out” – Diabetes Blog Week

Clean it Out – Wednesday 5/13 Link List.
“Yesterday we kept stuff in, so today let’s clear stuff out.  What is in your diabetic closet that needs to be cleaned out?  This can be an actual physical belonging, or it can be something you’re mentally or emotionally hanging on to.  Why are you keeping it and why do you need to get rid of it?”

I’ve been sitting with this one since last night, and I haven’t been able to think of anything that I feel I need to clean out, but maybe I’ll discover it while I write. Last year before I sold my house and moved to Maui, I did a major cleaning out of my old diabetes supplies.  This included old meters that I’d received for free and never used or didn’t like, ones I no longer had test strips for. Syringes I wasn’t using because they didn’t have half unit measurements, or just too big. LOTS of lancets (as most everyone else has mentioned), and I still have more than enough for the rest of my life, unless I actually start changing them… Instruction manuals I never read. Mostly I was able to give away the still useful supplies, and was again grateful as some of them had been given to me.

I love the way those of us in the diabetes community are so generous and willing to share when we have an abundance, or give when we know of someone in need. I was the very lucky beneficiary of my first Dexcom CGM, from a woman in my diabetes group in Tucson (Penny – thank you!) who has amazing insurance. Her company would give her a new CGM receiver every year! So she had several extras of them around, plus plenty of expired and near-expired sensors, from times she’d taken breaks from using it.  I was thrilled to receive this amazing device, that has made a huge difference in my day to day life with diabetes, and hopefully my long-term wellness as well.

At the time I had no health insurance. Before Obamacare was the law, the state where I lived, the wild west of Arizona, did not require insurance companies to cover people with preexisting conditions, and I could not get any health insurance. I was paying for all my medical care and prescriptions myself.  I bought  insulin from Canadian pharmacies at about a third the cost of US prices. Test strips I was able to buy at Walmart (Relion brand) for also about one third the cost of any other brand sold (about $36/100 vs $110/100 for all others).  And I just prayed I didn’t have an accident or major illness!

A CGM receiver costs thousands of dollars, and the sensors are about $80 each, and depending on how lucky you are with each one, only last anywhere from 7 days, to my personal record of 3 weeks. There was no way I would be paying out of pocket for that.  So I was incredibly blessed to receive this gift, along with another couple of friends giving me “extra” insulin they had, that they’d been over-prescribed.

It makes me wonder about the amount of waste of our medical resources in this country, when there are many people with diabetes who can’t even afford enough insulin to stay alive, and there are people throwing it away here. But that’s another topic. Today, I’m grateful for the abundance I’ve been blessed with through friends, and that I’ve been able to join in that spirit of generosity when I’ve had more than enough, and shared some of the extra supplies I’ve had whenever I can.

I’m in the process of receiving a new-ish, donated insulin pump soon (I hope), and am again so grateful that there are those who are wanting to help!

And for those who followed my Omnipod posts – I’ve officially given up on that pump (which was also given to me!) Out of 5 pods I wore, 2 sites became infected very quickly, and every one of them was uncomfortable at best, and painful at worst, and my blood sugars were the worst they’ve been in decades. For now, I’m happy to be back in quite good control with my Luxura half-unit dosing pen, and looking forward to trying a Medtronic pump, and having a trainer to learn the ins and outs, so I can really see if it will give me even better control than MDIs.

Aha! This is what I am ready to clean out – if anyone wants an Omnipod that’s a few years old, and some expired but still usable pods, and you’re close to Maui or willing to pay for shipping costs, let me know!

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…