All posts by Stacey D.

Top of The World.

Last night I got home from the first ever Diabetes UnConference in Las Vegas.  During my trip home, I saw on social media that Stephen wrote a blog post about it and I thought to myself, wow he’s quick!  But then I thought, he had the right idea.  While it’s still fresh in my mind I wanted to share my thoughts.

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The above photo is when we were on top of Las Vegas.  We took a ride on the High Roller (an observation wheel that goes 550 feet up and gives the most amazing panoramic views of Vegas).  It was incredible.

I’ve been to numerous diabetes conferences before.  And I was always happy to attend them not only to learn from the experts or panelists but also to connect with others from the diabetes community.    This was a little different.  The goal of the first UnConference was to allow the attendees to create the agenda, using various methods for us all to share with and learn from each other as peers.  I think it did that very well.  Nothing was shared on social media and I won’t even share explicit details here.  Just imagine being with about 90 other people with diabetes who get it, talking about what is important to all of us and I probably don’t even need to go into much detail.  As wonderful and important as online connections are, in-real-life connections are that much more powerful.  And stick with you forever.

Christel asked us to write down one word to describe how we were feeling at the end.  (I hope I don’t get in trouble for sharing this part!)  I was, and still am, feeling extremely thankful.  Finding the diabetes online community about 8 1/2 years ago when I was getting my first insulin pump was the best thing that ever happened to me.  And it has been extraordinary to watch it continue to grow over the years.  I’ve learned more over that time period than I did the first 24 years as a person with T1.  And I’m not exaggerating.  I wish so much that my father would have had the same opportunity.  I think it would have been so good for him and maybe things could have turned out differently.  The diabetes community (both online and off) has had an immensely positive impact on my life and for that I will forever be thankful.  I wish that every person with diabetes has this same opportunity and I will do whatever I can to reach those who may not have it yet.

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This above photo is one of the amazing views from the sky during my flight home back to the East Coast.  Looking through the (few) pictures I took during the weekend, I sensed a theme.  We were on top of Vegas.  I was on top of the sky.  And what I was left feeling – on top of the world.

Accuracy. And Lots of Links.

Glucose meter accuracy is one thing that I feel very strongly about.  As everyone living with diabetes should.  I have been able to keep my A1c under 7% for the past 2+ years, something I have never done before in my 33 years with T1D.  But one of the things I need in order to be able to do that is an accurate glucose meter.

When using the OmniPod insulin pump, I mainly used the PDM as a glucose meter since it was built in – it uses Abbott Freestyle test strips.  I also have a One Touch Verio IQ meter which I posted about some time ago, really liking all of its features.  Even though it reads a bit higher compared to other meters for me, I’ve been using that as my main meter since shortly before I switched to the Tandem t:slim pump.

When Dexcom recently announced a software update to their G4 CGM product for more overall accurate results, of course I was thrilled.  I downloaded the update as soon as I could a few weeks ago.  Since the G4 was already very accurate for me (in terms of being in line with my fingersticks) even better accuracy sounded amazing!    Until it started reading off to my glucose meter and it’s been like that for the past few weeks, driving me crazy.  Has anyone else noticed this?

I received an email last week regarding the results of a J.D. Power customer satisfaction survey that noted Bayer ranks highest in overall satisfaction.  In the report, it also states “In addition to these results, Bayer recently presented data from two new analyses of previously published studies at the Diabetes Technology Society Annual Meeting 2014 that demonstrated the impressive accuracy of Bayer meters”.  This got me thinking to my own Bayer Contour Next Link USB meter that was tucked away.  I’ve tried it in the past and liked it and recall it being very close to my Dexcom readings.  So I decided to give it a try again.

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(In the above picture, the Dexcom had been calibrated with the Verio) I’ve done my share of meter comparisons and I don’t want to do that anymore.  Not only is each meter different, it stresses me out completely to do this.  So I’d rather not drive myself crazy if I can help it 🙂

Since Friday evening, there is definitely a notable difference of having readings much closer to my Dexcom than the Verio has had recently.  All I want is a meter and CGM I can trust for accuracy and consistency.  Since I already trust the Dexcom after 6 years of use, I need a glucose meter that will give me the same experience.  My diabetes management cannot be at its best without it.

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 (While I have mentioned specific glucose meter brands in my post, I am in no way bad mouthing any of them.  Everyone’s experiences vary and I am only writing about my own.) 

Another Year.

I know I can’t be the only one who is wondering where on earth 2014 went.  I seriously feel like it just began!  It wasn’t a great year for me but it wasn’t a completely horrible one either.  I still have much to be thankful for and look forward to in the new year.

One thing I am NOT looking forward to is a decrease in my health insurance benefits.  Beginning on January 1st, my coverage will no longer be 100% and I will also have a deductible for the very first time in my 16 year career.  While this may seem like the norm to many, and I am completely aware of that, it is a big change for me.  With that in mind, I made a decision a couple of months ago to change insulin pumps.  I was using the OmniPod for over two and a half years.  I loved it.  Had few issues and really loved being tubeless.  However, the cost for my insurance for a 3 month supply of pods is well over $1,000 more than traditional infusion sets for a tubed pump.  In trying to budget medical expenses and cut where I can, I decided to forgo my OmniPod for a tubed insulin pump.  I have an Animas Ping that is still under warranty but I don’t love it (it is the pump I used before switching to the pods).  I was using it for a few weeks and disliking the average 180 units of insulin per reservoir, the scrolling,  the battery changing and associated rewind and priming necessary with each change.  Since I was always interested in the Tandem t:slim, I decided to take the plunge.  It was an investment I decided to make out of my own pocket and since I couldn’t get a trial with one, I took comfort in their 30 day return policy.  However it has been about 2 months since I began using it and couldn’t be happier with it!

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I set it up myself (and I do not suggest every person doing this) and it literally took about 10 minutes.  The priming takes a bit longer compared to other pumps but that is not a deal breaker for me.  I knew the touch screen was going to make operating it easier but I didn’t realize just how much.  I wasn’t sure how I was going to like having to charge it.  But this battery lasts forever!  And charges really quickly!  Other electronic device makers should take note!  I was using Apidra when I first started with the t:slim with no apparent issues.  However my insurance decided to change that for me as well and stop covering it beginning January 1st.  I asked my CDE for a sample of Novolog (the only short acting insulin my insurance will now cover) to see if it worked well for me.  It does so I switched that too.  All in all it’s been a good transition and I actually don’t miss my OmniPod as much as I thought I would.

My last endocrinologist appointment went ok.  It was rather short lived since she was called out for a consultation with another doctor but she did say I was easy 🙂  My A1c is stable and the rest of my blood and urine work were all normal, thankfully.  I have an appointment for some bladder test that may reveal another complication but more on that next month.  My last retina specialist appointment went well and showed no evidence of macular edema or subretinal fluid which was music to my ears!  That means my retinopathy has been stable for over 3 years thanks to Lucentis.

December 24th marked 33 years of T1D for me.  It’s hard to believe that much time has gone by but it came with very mixed emotions.  Over the past few years I’ve had a few things start to turn up which get me down from time to time but overall I’m still doing well and am very grateful for that.  And that is what I need to concentrate on.  To keep it that way 🙂

I want to wish all of my readers and friends very happy holidays.  I wish you all a healthy and happy new year. 

Happy Place.

I posted this picture on Instagram a few weeks ago.

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And it’s true. I haven’t been a stranger to massages for quite some time. I’ve always loved them. But I never went as often as I would’ve liked. I’m a big believer in how good they are for you, both physically and mentally. It reduces stress, pain, muscle tension and improves circulation. It also has been known for helping a wide array of things like headaches, joint pain, anxiety and digestive disorders to name a few. All I know is that I can forget all my worries and stress for a whole 60 or 90 minutes and concentrate instead on relaxation and feeling good. Who wouldn’t want that?

I became a member of a spa that opened near my home close to 2 years ago. Since then, I’ve been going for massages more regularly especially in the last few months. I’ve had lower back pain for the longest time. There has been a noticeable improvement in the past year or so. I’ve also had major pain in my lower legs when walking (even at a slow pace or short distances) for quite a long time and have found the massages help a great deal. Even just for my overall well being and state of mind, it does good. And that in turn helps my diabetes as well since everything is connected!

It’s an investment, since massage therapy is certainly not cheap. But it’s one that I’m gladly willing to make. Even though I had a massage today, I’m really looking forward to my next appointment 🙂


I will be posting about my recent change to the Tandem t:slim insulin pump hopefully soon, for those that are interested!

Some Updates.

I realize I have not been blogging much lately so wanted to say hello to everyone and let you all know what’s been going on around my neck of the woods and keeping me busy.  Or maybe distracted.

 

  • It seems my blog anniversary completely slipped by me!  The end of August marked four years since I started here and I want to thank everyone that has ever stopped by to read, to comment and support me.  This wouldn’t mean to me what it does if it weren’t for all of you.
  • In July, I had a repeat gastric emptying scan done.  Unfortunately it confirmed what both me and my gastroenterologist figured, my gastroparesis has progressed.  Compared to the first one I had four years ago, it is still considered mild but it has gotten worse.  She prescribed two medications to take as needed and luckily I’ve been able to manage without them.  My hubby did some investigating to see if there were any natural remedies to help and he found out about ginger root.  I have been taking capsules before most meals and have noticed that it does help.  Thank you hubby!  I have learned a lot about this condition and it is not something that I would wish on anyone.  I’m truly hoping that managing my blood sugar as best I can will help keep it mild.
  • A few weeks ago I had my very first insulin pump infusion site infection, after almost 8 years of pumping.  I had removed the pod from my lower back and it was a little sore which is not completely unusual.  However the next day it was extremely painful and with the advice of a friend, I had it looked at by a doctor.  It was indeed infected so was put on 10 days of an oral antibiotic.  It has healed nicely but I have to admit I’m a bit weary of getting another one.  I’m hoping it was just a one-time-fluke type of thing.
  • I have been more involved with IRL citizenship and advocacy type efforts.  I am part of the citizenship committee as well as the disability network at my job.  It is very fulfilling to be part of such great networks and helps make my “regular” job more worthwhile.  I am also on the walk committee of my local JDRF chapter this year.  It makes me proud to be part of an organization that has announced such exciting advances in type 1 diabetes research in recent months.
  • Over the past 2 months, I haven’t exercised and my eating habits weren’t always the greatest.  While I’m finally working on changing that now, I was extremely surprised at the results from my endo appointment this past week.  A1c went down, not up like I expected and also one of the lowest I’ve ever had.  Also I lost a couple of pounds.  None of this makes much sense to me and really not the motivation I was hoping for to get back on track but honestly I’ll take it.  It makes me think back to all the times I was expecting and hoping for an A1c a lot lower than it turned out to be.  Sometimes diabetes is just unpredictable.
  • Most importantly, on September 3rd, my Mema (grandmother) passed away.  It wasn’t sudden as her health had deteriorated rapidly since earlier in the year but I still cannot believe she’s gone.  I’m glad I got to spend more time with her the few weeks before she passed, even though she may not have realized it was me.  I’m glad and thankful she was a part of my life for so long.  I’m glad that she lived such a full life – she would have been 95 next month, had 8 grandchildren and 17 great grandchildren.  I’m glad that she went peacefully and is now in a better place.  But it still hurts and I miss her dearly.

 

I suppose that’s most of it in a nutshell.  I’m hoping for more peaceful times to come and to make a better effort at blogging more often.  Especially with a big month coming up with a lot to do and say.  Oh, one more thing.  I got the new iPhone 6 on Friday (I was one of the crazy people who pre-ordered early in the morning on September 12th and not the crazy person who got on a line at the Apple store two weeks ago) and would highly recommend it for other iPhone lovers out there!

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(image credit goes to the internet)

My Stuff is Your Stuff.

I have a lot of crap.  Seriously, I have so many of so many things!  I realized today when looking for something just how many meter cases and bags I have.  It’s insane.  I threw some out, the boring old black ones that come with meters that I never ever used.  There are a few great ones that even though I like them, I just don’t use them because of how many I have.  And this is where you benefit from my addictions 😉  I have four meter bags from the lovely Sugar Medical and Stick Me Designs that I am giving away.  They are all lightly used, with no signs of wear or tear at all.  Like brand new!  All you have to do is comment below by midnight EST on Saturday (7/26) and you will be entered into the drawing.  I will announce the winner on Monday.  You may want to make sure you like them all, because the order in which they are pictured below is the order in which they will be given away.  So check them out and good luck! 🙂

 

(Dexcom pictured for size comparison)

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Diabetes Burnout.

I have been living with T1 diabetes for almost 33 years.  That is 11,863 days or 1,694 weeks or 284,712 hours or even 1,024,963,200 seconds without ever getting a break from having to fill in for my non working, good for nothing pancreas.  When I was a child, my parents did most of the worrying and diabetes work.  But it was still there.  As I grew into my teenage years, my focus sadly was not so much on my diabetes.  But it was still there.  When I went to college and got my first full time job and started making an adult life for myself, I didn’t want my diabetes to be at the forefront of my day to day tasks.  But it was still there.  And it will always be there.

I love Ginger.  I “met” her initially online, then got to meet her in person a few times and also worked with her briefly for coaching.  I honestly learned a lot from her in regard to diet and exercise, and that was after living with diabetes forever.  She always has such a positive outlook and loves to share her knowledge to help others.  I read her books Your Diabetes Science Experiment and Emotional Eating with Diabetes and found them both to be easy reads, full of useful information.  When I was asked to give tiny input and also to give a preview of her newest book, Dealing with Diabetes Burnout, of course I said yes.

In more recent years, I have put a lot of effort into working on my diabetes management.  (I hate to use the term “management” but I guess that’s what we try to do is manage our blood sugar right?) And I can sometimes feel it taking its toll.  One thing Ginger mentions in the beginning of the book is  “It’s endless.  Whether or not you become noticeably frustrated with your diabetes, the constant thought, energy and worry is inevitable.  And that can lead to burnout.  That constant effort and worry is exhausting, even if it motivates you to take care of yourself”.  Bingo.

I always try to focus on the positive and not dwell on the negative, especially when it comes to diabetes.  Another thing Ginger says in the book is “Diabetes may get to use up a tremendous amount of my mental energy every day, but I refuse to let it use up my happiness” and I can totally relate.  I think that is the key to not losing your mind completely.

Reading this book made me realize that number one I am not alone with feeling overwhelmed at times.  It also made me realize that it’s okay and totally understandable to get down from time to time.  I almost think we have to in order to cope healthily.  Ginger offers great insight in how to get to the bottom of your feelings and more importantly how to get through it.  No matter what you’re feeling today or what you’ve felt in the past, I would highly recommend reading this book.  It might be just what you didn’t know you needed.  I have an appointment with my endocrinologist tomorrow and will be mentioning it to her to tell her other patients.

 

Happy Birthday Daddy.

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Today is my father’s birthday and he would have been 72.  It’s hard for me to imagine him at such a mature age, since it’s been so long that he has been gone.  While the ache in my heart from losing him isn’t new anymore, it is still there and always will be.  I found the below images and found them to be perfect for today.

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Happy birthday Daddy.  I will always miss you deeply.

 

That’s a Wrap – Diabetes Blog Week 2014.

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Apparently I was busy Friday, Saturday and Sunday since I didn’t get a chance to post the last three days of Diabetes Blog Week!  But I’m here now to wrap things up in a combined post.

 

Diabetes Life Hacks from Friday was the sharing of the (non-medical) tips and tricks that help you in the day-to-day management of diabetes.  Tell us everything from clothing modifications, serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s backlight when not on the home-screen (scroll to the bottom of this post). Please remember to give non-medical advice only! (Thank you Rachel of Probably Rachel and Kelley of Below Seven for this topic suggestion.)

I wouldn’t say I have too many suggestions of tips and tricks that I use that haven’t been posted already.  The only thing I can think of is using hydrocortisone cream after removing pods (or infusion sets).  I know those little cannulas can leave marks, some of which can seem permanent, but I think this has helped in that area.  I use the one by Aveeno but I would imagine any type would work just as well.  I just apply a liberal amount to the area which was the home for the pod for the previous 3 days.  I also used this before switching to the pod, when I used a tubed pump with infusion sets.  I really think that it helps the skin heal and not leave any permanent marks.

 

Saturday Snapshots from Saturday was back for another year, let’s show everyone what life with diabetes looks like!  With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures.  Post as many or as few as you’d like.  Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.

I post lots of diabetes related pictures on Facebook or Instagram on a normal basis.   Doesn’t everyone??  Here is one from Saturday specifically – it was a soft landing from a super high BG resulting from a leaky pod.  It took a little longer than I would have liked for the new pod and insulin to catch up but at least I didn’t crash 🙂  (for the record, leaky pods is not a normal occurrence for me.  I had it on my left arm and had bumped it while walking through doorways not once but twice so I’m thinking I jarred it loose)

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And finally Sunday was a wrap up of another Diabetes Blog Week, let’s share a few of our favorite things from the week. This can be anything from a #DBlogWeek post you loved, a fantastic new-to-you blog you found, a picture someone included in a post that spoke to you, or comment left on your blog that made you smile. Anything you liked is worth sharing!

While I find it completely impossible to totally keep up with everything during blog week (umm hello, I couldn’t even blog every day!) and didn’t really have the time to comment much, I did read a lot and love seeing everyone come together and share thoughts and ideas.  A huge thank you to Karen who illustrates her awesomeness every year by organizing this event.  I will be going back to my regularly-scheduled-once-in-a-while-blogging now 😉