Tag Archives: type one diabetes

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 7 – Making Connections on Diabetes Blog Week

“Click for the Continuing Connections – Sunday 5/17 Link List.
The very first inspiration for Diabetes Blog Week was to help connect our blogging community, and that continues to be the most important reason it’s held every year.  So let’s help foster and continue those connections as we wrap up another Dblog Week.  Share a link to a new blog you’ve found or a new friend you’ve made.  Or pick a random blog off of the Participant’s List, check it out and share it with us.  Let’s take some time today to make new friends.”

First of all, I did miss Day 6, which was favorite posts you’ve written, or why you decided to blog. Since my first blog here was explaining why I’m here, and I’m leaving for NYC for my daughter’s college graduation tomorrow, I decided I could skip it.

Today is the 7th and final day of DBlogWeek, and it is a great topic, as I’ve found several new diabetes blogs I’ve really enjoyed. I look forward to more, as I’ve not had nearly enough time to read all the ones I’ve wanted.  I’m very grateful to Karen Graffeo of Bittersweet for creating this blogging event and doing all the work to bring us together!

A couple of the diabetes blogs I’ve discovered this week and really enjoyed include:

Katy of Bigfoot Child Have Diabetes. She’s smart, funny and a good writer, which are all what matters to me.

Jillian at Push My Buttons and Turn Me On – also funny, smart, and interesting!

One more: Despite My Pancreas same qualities, and I don’t know her name yet…

SO grateful to all of you in the DOC who make me smile, educate me, bring my hope and inspiration, and remind me over and over I’m not doing this alone, and I’m in some great company! Thank you.

Day 5 – What I Ate Today – Diabetes Blog Week

Taking a cue from Adam Brown’s recent post, write a post documenting what you eat in a day!  Feel free to add links to recommended recipes/shops/whatever.  Make it an ideal day or a come-as-you-are day – no judgments either way.  (Thank you, Katy of  Bigfoot Child Have Diabetes for this topic.)

Fortunately, I hadn’t looked ahead today to see what the topic was, so my day of eating wasn’t done self-consciously, and it was in many ways typical for me, which is not very interesting!

For breakfast, I had what i have 99% of the time, a delicious and really nutritious smoothie. It’s fairly low carb, using all organic ingredients, with unsweetened coconut or almond milk as a base. I add some greens, since I don’t eat them much otherwise – today it was chard, and then a small “apple banana” from my yard. They’re about half the size of a regular banana and less sweet. I am blessed to live on Maui and try to use the fruit from my yard as it ripens – oranges, papayas and bananas. I add frozen berries for flavor and antioxidants, buying organic ones at Costco. Today it was strawberries, sometimes blueberries or mixed berries.

Then I also add a bunch of “superfood” powders – hemp protein powder, spirulina, chlorella, maca and cacao, with a bit of coconut oil. Each one has amazing properties to support health – balancing hormones, giving energy, adding healthy omegas, etc… I have  the whole smoothie recipe on my other blog if you’re interested in details!

Two cups of that is about 45 grams of carbs, fairly low glycemic (unless I have papaya and banana), and I take 3 units of Humalog. This fills me and keeps me going for many hours.

Since my breakfast was late today, and I had clients all afternoon, I was in a hurry and ate less lunch than unusual and even more oddly than normal for me. I had some cheese, some strawberries, some kombucha and a glass of green juice (green veggies blended), without taking insulin.  Then some dark chocolate and half a raspberry fig bar when I was dropping low…

By late afternoon I was really hungry and ate my leftover half of a chicken tostada from last night for dinner. It was a corn tortilla with beans, lettuce, tomato, chicken, avocado and lots of garlicky salsa. I took 3 units which was too much, as most of the beans were in the first half it turned out, so I had a Chobani cherry yogurt for dessert.

I actually had one of the best CGM readings ever the past 24 hours, and I’m not sure why i’ve been having such excellent numbers, but I’m really grateful! (I may have to eat a bit more soon, but it’s slowly creeping up with the yogurt hitting my bloodstream now…)

Dexcom, CGM, no-hitter, Dexcom G4,

CGM May 15, 2015

Here are the other participants in the Diabetes Blog Week– great fun to read!

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!

Day Two – “Keep It To Yourself” in Diabetes Blog Week

Day Two Topic: “Keep It To Yourself”

“Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?  (This is not an attempt to get you out of your comfort zone.  There is no need to elaborate or tell personal stories related to these aspects.  Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.)”

This is a great question, and it made me think about what it is about diabetes that I keep from myself, because that is what I also don’t share with others. I’m pretty open about my interior life with friends and family, and quite public about my innermost thoughts (hence 2 blogs… including Luminous Blue 5 about my daughter during her journey with cancer, and my life after her transition.)

In 39 years of living with type one diabetes, with the tens of thousands of shots, urine and now blood tests, surprising lows, frustrating highs, calculations of carbs, and the impossible task of trying to account for ALL the variables and making the best guess of how much insulin to take…I rarely allow myself to feel the deep frustration, grief and loss that comes with this condition.

I was born with an overwhelmingly positive attitude, which I’m very grateful for, and therefore I rarely allow myself to even think about what life would be like without diabetes and all it entails. When I do, I cry. I can barely imagine the freedom that would come without the steady presence of diabetes, the 24-hour-a-day awareness of what my body is doing related to food, insulin, and blood sugars. I complain sometimes, about the frustrations of a low, of needing to wait to eat dinner when I’m hungry because I’m over 200, etc, but mostly I don’t. Mostly I live with it, handle it, enjoy my life to the fullest, and keep those thoughts and feelings waaay in the background somewhere….

I never went through the rebellious teen years of ignoring my diabetes. I have never just let it slide completely. I care too much about feeling good in my body. I hate how terrible I feel when my blood sugar is high. And, I do believe that every bit of effort I make may help me stay healthy in the long run, and so far it seems to be working, with (almost) no complications after all these years. (This is another topic I don’t like to talk about – the worry about complications…)

I don’t want anyone to worry about me, nor do I want pity, or even sympathy. That’s part of why I don’t like to go there – I believe that our attitude is a huge part of our health, and for me, acting healthy, looking healthy, and being seen as healthy are an important factors in actually BEING healthy. Much of the time I can even find gratitude for the ways diabetes keeps me grounded in my body, present and aware, and probably healthier than I’d be without it.

I can’t say I’ll never be telling these stories, because that’s part of why I started this blog, to have a community of people who understand the frustrations, the grief, the amount of time and energy that is spent on diabetes. But it’s not what I want to spend much of my time on. And, now that the artificial pancreas, and closed-loop systems are getting closer to being available to all of us, I can allow myself to start looking towards the day when I might simply have to be sure there’s insulin in the pump, and then forget about it for hours, or even days at a time!!

I am ready. WE are ready. It is time.

To learn more about Diabetes Blog Week, see here

To see all the other wonderful participants, see here.

“I Can…”

This is the theme for today’s post, as I join this 6th Annual Diabetes Blog Week. “What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could?  Or what have you done that you’ve been particularly proud of?  Or what good thing has diabetes brought into your life?”

I have had type one diabetes for 39 years, and there’s nothing I can think of that I’ve wanted to do that diabetes has kept me from doing.  One of the things I’m most proud of, was also one of the most challenging things I’ve done – having two healthy, beautiful babies. I never considered not having children, it was something I desired and knew I would do as long as I can remember. I simply knew I’d have to work super hard to keep my diabetes in perfect control during the 9 months of pregnancy. Easier said than done, of course!

This was back in 1990 and 1993, before CGMs, though fortunately, after blood sugar meters. I worked my ass off – probably the hardest thing I’ve done, keeping my blood sugars as near normal as possible, by eating at the exact same times, the same foods mostly, and constantly adjusting insulin doses as my hormone levels kept changing my insulin needs.  I worked with a team at UCSF (which was mostly very helpful), and felt like keeping my A1C under 6 was my full time job for both pregnancies.

I was successful, and had two completely healthy baby girls, the greatest joys (and challenges) I could imagine! They both were large babies even with my excellent blood sugars, and I was deeply disappointed that they had to be born by c-section, having gone a week past my due dates with each of them.

At the time, I was a birth doula, and supported other women to have natural hospital and home births. In my own pregnancies, being considered high risk, and being told over and over all the dangers to my babies, I did not feel supported in having a natural birth.  I was thrilled to have my daughters be born healthy, and though that was ultimately the most important thing, I still needed to grieve the loss of the kind of birth I had longed for.

My daughter’s never knew me without diabetes.  Being a mom of babies and then young children, while managing my type one diabetes was occasionally challenging (like when I was low and had to eat something before feeding a crying baby, or finding good hiding places for the Peppermint Patties I ate for lows), though not as challenging as having teenagers!

I have found that anything I really want to do, I find a way to do, and diabetes doesn’t stop me!