Tag Archives: living well with diabetes

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.

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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 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!

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…