Category Archives: Advocacy

Top of The World.

Advocacy, Community, Education, Emotions, Events, Fun, Traveling

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.

Diabetes Burnout.

Advocacy, BG, Community, Education, Emotions

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.

 

That’s a Wrap – Diabetes Blog Week 2014.

Advocacy, Community, Education, Emotions, Events

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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 😉

Mantras and More – Diabetes Blog Week 2014.

Advocacy, Community, Education, Emotions, Events

DBlogWeek-FBCover

 

Day 4 of Diabetes Blog Week is here and  we are getting back to the positive with our topic Mantras and More. Yesterday we opened up about how diabetes can bring us down. Today let’s share what gets you through a hard day? Or, more specifically, a hard diabetes day? Something positive you tell yourself, or mantras, or what you fall back on to get you through. Maybe we’ve done that and we can help others do it too? (Thanks to Meri of Our Diabetic Life for suggesting this topic.)

There were two things that came immediately to mind when I read the topic for today.  They may sound silly but I’m posting them anyway 🙂

The first is you can do this.  I think even before the official You Can Do This Project was born, this saying was a bit of a pep talk I’d use to myself when things get tough.  Battling stubborn high blood sugar?  You can do this.  A1c not where I want it?  You can do this.  Being sent for tests to rule out diabetes related complication?  You can do this.  Scary feeling low blood sugar seeming to last forever? You can do this.  Getting up the courage to tell my story? You can do this.  And on and on.  Doing the things that at times seem like I can’t, certainly beats the alternative.

The second is a blast from the past and for some reason got stuck in my head when thinking about diabetes related mantras.  Anyone remember this?  Love it!  (shout out to Mike who I learned thought of this in relation to today’s topic as well!)

Suga Sheen – All The Diabetics

 

I think most importantly, when the going gets tough I just remind myself that things could always be worse.  Even if it may seem like the worst possible moment in the world, it most likely is not.

What Brings Me Down – Diabetes Blog Week 2014.

Advocacy, Community, Complications, Education, Emotions, Events, Family

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Today is Day 3 of Diabetes Blog Week and the topic = May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)

 

To me, this is probably both the easiest and the hardest topic to write about.  The easiest because there is just so much that goes into managing diabetes psychologically so the material is endless.  The hardest because sometimes it just seems simpler to not confront the negative emotions that come with dealing with it day in and day out.

I think what brings me down the most was seeing first hand all the complications from T1D my father endured for years, ultimately losing his life from it all.  There is not much more heartbreaking than losing a parent, especially losing them to the same disease you yourself live with.  However instead of dwelling on those dreadful, heartrending, painful details I focus on the life that I am living.  I have had T1D for over 32 years already.  And while I have started with minor complications, they are minor.  I am extremely fortunate to have access to tools and resources that help keep me on top of my diabetes as best I can.  Early detection is critical which is why I have routine exams with multiple doctors.  While I’m fearful of complications that may occur, I do not want to encourage the progression of those complications by discounting them.  My father was diagnosed during a very different era of diabetes management and I need to remind myself of that.  He also went undiagnosed for a long period of time based on symptoms.  I on the other hand, was diagnosed very early, thanks to the knowledge he and my mother possessed.

I try my hardest to focus on the positive.  I take one BG at a time.  I take one doctor visit at a time.  I strive to accept the things I cannot change and since I cannot change having T1D, I need to accept it.  If I let it, the fear and weight of his suffering and his loss would consume me.  So I choose to not let it.

Let’s Change the World – Diabetes Blog Week 2014.

Advocacy, BG Meters, Community, Education, Events

DBlogWeek-FBCover

 

So I’m playing catch up with Day 1 of Diabetes Blog Week.  And hoping I’ll stay caught up the rest of the week.  Stay tuned for that.

Day 1’s topic was “Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you. (Thanks go out to Kim of Texting my Pancreas for inspiring this topic.)”

While every aspect of living with diabetes or caring for a loved one with diabetes means a lot to me; access to supplies, mental health, peer support, proper education, etc.  Nothing gets my blood boiling quite like test strip inaccuracy.  I’ve blogged about this a number of times and luckily we had the opportunity to raise our concerns to the FDA recently.  But the seriousness of this issue just boggles my mind in 2014.  When I was first diagnosed, like many other people with T1D, I didn’t even have a blood glucose meter.  And while I appreciate the ease in which I can have my pick of glucose meters today, none of that should matter if the results I get day in and day out are not completely accurate.  While I love a color screen or a nice back light or a quick five second reading or an app that automatically uploads readings, none of those things are as important to me as accuracy.  We dose ourselves with a medication that can be lethal if not administered correctly based on those results!

My ultimate goal living with diabetes is to do the best I can and stay as healthy as I can be.  And while access to supplies, my mental health from peer support and proper education will certainly help me do that, none of that will matter if my blood sugar readings aren’t accurate.

 

Poetry Tuesday – Diabetes Blog Week 2014.

Advocacy, Community, Emotions, Events

DBlogWeek-FBCover

If you haven’t heard already, this week is Diabetes Blog Week, started by the lovely Karen!  I’m late to the party, but was able to put my writing cap on to get in a post for Day 2.  (I will certainly be catching up at some point on the Day 1 entry that I missed)

Poetry Tuesday.

 

 

Fear.

Needles.

Uncertainty.

Lancets.

Sadness.

Blood.

Routine.

Carbs.

Determination.

Sensors.

Numbers. Numbers. Numbers.

 

Hope.

 

A 32 year life with T1D.

Sisters.

Advocacy, Community, Education, Emotions, Events, Traveling

Last night I returned from attending my fourth Diabetes Sisters Weekend for Women conference, this time in the Alexandria Virginia/DC area.  And I feel so grateful.

One of the things I was looking forward to most was seeing old friends and making new ones.  And of course that was one of the best parts.  The bonding that happens between women with diabetes at these events is truly remarkable!  But another part that I have found so rewarding through the years is the knowledge and motivation gained through connections and sessions to keep me empowered.  I consider myself an empowered person living with diabetes.  However dealing with the ins and outs of it day after day, for the past 32 years, can leave me feeling less powerful at times.  Sometimes a little push is all I need to get back to it.

We were fortunate to be in the company of Dr. Nat Strand.  I first met her at the 2012 conference and loved her.  She is so down to earth, knowledgeable and has a positive attitude that is contagious.  She lead a session this time around about Diabetes from Head to Toe.  While I basically knew all the organs and body parts that diabetes can have a negative affect on, hearing her talk about it just reiterated to me how important it is to keep a proactive approach to my health.  Although I have started with minor complications, I have had them diagnosed very early and that has been to my benefit and I believe what has kept them minor so far.  I have also had others ruled out by having the appropriate tests for them.  Especially these days, early diagnosis is key to proper treatment and hopefully preventing the progression of the condition.

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(Me with two lovely ladies, Nat Strand and Susan Weiner, RD, MS, CDE, CDN)

 

Although I am already active in the diabetes online community, it was fun to see Cherise and Kerri teach the group how to connect through blogging and social media.  There was also a DSMA Live meetup which was fun!

I actually got up at 6:30 on Saturday morning to work out.  I know, I don’t know what has gotten into me!  There were exercise options for the early morning session but instead of T’ai Chi or a walk around the town, I chose to get my butt kicked with the lovely Ginger 😉  It was an anaerobic workout teaching how to use your body as weights instead of equipment.  I learned that I’ve been doing squats incorrectly but have pretty good form for push ups 🙂 It was a hard but awesome workout.

There was a pretty emotional discussion about how diabetes affects eating and body image.  It was lead by a panel consisting of Asha Brown, Diana Naranjo, PhD, Rhonda Merwin PhD and Lorraine Platka-Bird PhD, RD. When put into perspective, how can anyone living with diabetes view food the same way as people without diabetes?  Food is one of the key elements in our management.  It could either be a life saver or it could be a derailment in blood sugar control.  Attention and calculation surrounds every single piece of food that goes into our mouths.  No wonder this poses the opportunity for psychological issues!

Claudia Graham, MPH, PhD, gave the keynote presentation and also received the 2014 Inspiration Award at dinner on Saturday night.  She is the Vice President of Global Access at Dexcom and has thrived with diabetes for over 35 years.  She spoke to us about how to be your own CEO as sometimes being a woman can have some stereotypes attached to it.  She also pointed out key things to know about your health as it relates to diabetes.  One key statistic she mentioned was that as a person living with diabetes, you will spend 8,760 hours each year taking care of it.  Your doctor on the other hand will spend on average one hour each year.  One.  This is the only disease that leaves 99% of the treatment in the hands of the patient.  And that is why it is so critical that we be empowered and be our own CEO.

We were all awarded with a stone, to commemorate the years we have lived with diabetes.  Mine was for courage.  And I have to admit, courage is one of the things I will take with me after being in the presence of such  inspiring, dynamic and valiant women.

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Thank you Brandy and Anna for organizing such a wonderful event once again!

I also want to thank my husband for joining me on this trip as he has the past three times. I don’t think he realizes just how much that means to me. I don’t know what I would do without his support.

 

You Are Needed.

Advocacy, Community, Events

TGIF!  There are some great things going on around the diabetes community so I wanted to take a few minutes to highlight some of them. 

  • I haven’t used injections in over 7 years but I did for 25 years before pumping insulin so I know what it’s like.  There is a great tool out there for the many insulin pen users but of course is not available here in the US yet.  Timesulin is a timer-enabled replacement cap that fits onto an insulin pen that tracks when the last injection was administered.  Pretty helpful huh?  They issued a press release on March 11, 2014 describing their campaign to crowdfund the $35,000 required for necessary FDA approvals among other things for this product to be successful in the US.  The will be accepting donations until April 20th – please consider donating to this very valuable cause.
  • Sometimes I may feel like I’m near Medicare age, but I’m not.  Yet.  So I don’t really have to think about Medicare yet.  Or do I?  From what I hear, it can be a whole different beast than private health insurance.   Especially for people with diabetes, this can be a major problem.  Take the fact that they do not cover continuous glucose monitors at all.  What?!  In 2014?  I kid you not.  And while I’m not planning on Medicare for some time yet, there are plenty of people who are dealing with this issue now.   Our friends Sue and Laddie over at Test Guess and Go, have introduced a new campaign to promote the need to get bill H.R. 3710: Medicare CGM Coverage Act passed in Congress.  Please take a few minutes to look over this post from Sue and take the actions she is suggesting.  If the people who are most impacted by rules like this form Medicare do not speak up, who will?
  • So many of us bitch and complain about how the FDA goes about approving diabetes devices in the US.  Yes, I’m guilty of that.  And sometimes there may seem like there is not much we can do about it.  But thanks to people like Bennet, we know that there is something we can do.  We have until April 7th to comment on the FDA’s proposal on glucose meter guidance.  That is one topic that could drive me mad if I let it – meter accuracy.  Please check out the guide here from Bennet that explains what we need to do to make our comments heard.
  • I found out about this new product from Jacquie over at Typical Type 1 and just received my order last week.  I’m not sure when I began the habit, but I usually lick my finger after a BG test.  While I don’t typically care much what others think of me, I do realize that could come across or even be somewhat unsanitary.  So when I read that there was a disposable absorbent sheet that I could wipe my fingers on, I was intrigued.  While there is nothing especially fancy about them, they serve a great purpose pretty conveniently.  I’d recommend checking out Diabetic Dabs for yourself.  I even got the heart shaped ones!

I feel like times like these are when our advocacy efforts matter the most.  If we put all of our voices together, we can really make a difference.  For all of us.

I hope you all have a great weekend!  🙂

Save a Child with Diabetes.

Advocacy, Community, Education, Events

I just gave two children in developing countries a month of life saving supplies.  How, you ask?  By donating to the Life for A Child, Spare a Rose campaign.

Here in most parts of the United States, having access to insulin is not the biggest worry of many people living with diabetes.  But that’s different in other developing countries.  In those parts of the world, lack of access to insulin is the most common cause of death for children with diabetes.  And that is heart breaking isn’t it?  Well we can all do something to help them.

Spare a Rose, Save a Child is simple: buy one less rose this Valentine’s Day and donate the value of that flower to children with diabetes. Your loved one at home still gets flowers and you both show some love to children around the world who need it.  Please consider making a donation.  These people need our help.

Sparearose