What Brings Me Down – Diabetes Blog Week 2014.

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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.

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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.

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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.

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.

 

Finding Real Estate.

I’ve been using a portable pancreas (aka insulin pump) for seven and a half years now.  And the OmniPod for a little more than two years.  My favorite spot for putting pods or infusion sets is my abdomen.  However to prevent scar tissue from building up, I don’t want to use just my abdomen.  Even though I can rotate about 4 different areas of my abdomen comfortably with the pods, I don’t think that is enough rotation.  I’ve used my lower back and upper tush area as well but lately I’m finding the absorption isn’t consistently the same resulting in higher BG.  I’ve never been able to use my thighs for sites – the absorption there just plain sucks.  I’d love to think it’s because one part of my body is actually muscular, but if Kris Freeman can use his pecs for pods, I should just shut up 😉

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(photo credit goes to https://twitter.com/TeamFreebirdXC)

 

I think this is a common problem for insulin pump users.  My question is, how did you find a resolution?  I’m getting a little frustrated and don’t want this to turn into a huge issue if I can help it!

You Are Needed.

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!  🙂

Good for You.

You may have already heard of or even tried the glucose gels by Level Foods.  I have tried them and they are good for treating low blood sugars.  While my go-to treatments are still usually the good ol’ juice boxes, they do taste pretty good and work fairly quickly.  Lucky for us, Ethan, the founder of Level Foods, expanded his products and now offers protein shakes and bars.

Over the past year, I have made a greater effort to enhance my knowledge of food and exercise and how it affects my body with type 1 diabetes.  I have incorporated Beachbody into my life, with their workout programs and their Shakeology meal replacement shakes.  I recently did a 5 day Shakeology and clean eating cleanse that did wonders for my glucose levels.  I also learned a bit from my friend Ginger about food.

When I received an email from Ethan of Level Foods, I was very excited to give his new protein shakes and bars a try.  There are other recent reviews of his products from Sarah, Rachel and Brian.  Their feedback was all positive and I am going to add to that.  I’ve tried protein shakes by Special K and Muscle Milk.  Special K tasted very good however the nutritional value wasn’t exactly ideal.  The nutritional value of Muscle Milk was better however I didn’t particularly like the way it tasted.  I’ve also recently tried protein bars by Quest and wasn’t exactly in love with the taste of those.  Luckily the bars and shakes from Level Foods both taste delicious and have good for you ingredients.  And the bonus? My BG loves them!  They are low carb so very BG friendly.  The flavors of the shakes are vanilla, chocolate, strawberry and caramel.  While they all taste good (honestly!), that is the order in which I like them 🙂  The flavors of the bars are caramel chocolatey peanut, double chocolatey chip, chocolatey crisp and chocolatey peanut crunch.  Again they are all good, but those are the order in which I like the bars.  I’ve shared my samples with my hubby, who is very into weight training and protein products, and he enjoyed them as well.  I will most definitely be buying these products.

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Now here is the fun part.  And extremely generous of Ethan.  He is offering a premier bundle pack to one lucky winner!  All you have to do is leave a comment on this post by midnight (EST) Saturday February 8th and I will randomly select a winner on Monday, February 10th and announce it here.

For those who will not be lucky enough to win the bundle pack, he is offering a 25% off $20+ purchases by using the code below.

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Good luck everyone!  This is a great contest to win and I would highly recommend trying these products out!  And a very big thank you to Ethan for the products he created and for this great offer 🙂

Save a Child with Diabetes.

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.

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Diabetes Art Day 2014.

Happy Diabetes Art Day!  If I’ve learned anything from Diabetes Art Day over the past few years, it’s that I’m really not too creative.  And I’m okay with that!  Most of the time anyway 😉  Thank you so much to Lee Ann for creating this event – I really do love all the passion you put into it and seeing what everyone else creates.  I’d have to say my favorite form or art is photography.  Especially since I used this last year too!  Without further ado, here is my piece for 2014:

A world with diabetes is a world with numbers.

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