Category Archives: Advocacy

Recap of 2013.

Advocacy, BG, Community, Education, Emotions, Endocrinologists, Events, Family, Holidays, Milestones

Hi friends!  It seems like I’ve had a lot going on this year and my posts have been sporadic. But I’m still around and I’d love to recap what my year was about.  When I DID post that is 🙂  I’d love to call them highlights but honestly a lot of them don’t seem so exciting to fall under that category!

December: 32 years ago today I was diagnosed with type 1 diabetes.

November: Oops.

October: What I am very glad about is that I am an empowered patient and have the wisdom to make this sort of determination.

September: Have you ever felt that something in your life needed to be “recharged”?

August: This is a fairly new collaboration within the diabetes online community to spread knowledge about the fact that the glucose test strips we use today, yes in 2013, are not completely accurate.

July: Talking with a true inspiration.

June: This isn’t really diabetes related.  But it’s about a huge part of my life – my twin sister.

May: Like the past conferences, I had a wonderful time.

April: I am honored to be hosting the Best of The ‘Betes Blogs for the month of April.

March: It was a little after 1am when I woke up kind of suddenly.

February:  Lucky for me, the great people over at Sanofi Diabetes asked if I was willing to share some advice or tips if you will, on traveling with diabetes.

January: When I was growing up with diabetes, there weren’t many books around that I knew of on the topic.

I cannot believe that we are getting ready to say goodbye to another year.  Is it me or did this one just fly right by?? I want to wish all of you a very happy and healthy new year.  May 2014 be good to all of you 🙂

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Big Blue Test 2013.

Advocacy, BG, Community, Education, Events, Fitness

I posted about the Big Blue Test last year.  And I’m going to reflect back on that post since the initiative is going on again this year!  If there are 20,000 tests logged by November 14, 2013, the Big Blue Test grants (St. Anthony’s Medical Clinic in San Francisco, CA and University of Colorado, Skaggs School of Pharmacy and Pharmaceutical Sciences in Aurora, CO) will be funded to provide people touched by diabetes who are in need with lifesaving supplies, medical tests, treatment, and/or patient education (each will receive US$2,500) and an additional US$5,000 will support projects in Haiti and the Dominican Republic.

Big Blue Test.

 

Posted on October 18, 2012

 

 

One of the things that I struggle most with in terms of my health and(or) diabetes management is consistent exercise.  Usually I do well for a few weeks then work hours are longer or I have more things to do and I get off track.  I’ve made a promise to myself recently that I am going to make it a priority in my life no matter what.  What helps me a lot to stay motivated honestly is support and inspiration of others.  When I see someone post about working out or read about the accomplishments of athletes living with diabetes or pass by someone who is running or riding a bike in my neighborhood, I want to get active.

 

That is why I love the Big Blue Test.  It is a movement started by the Diabetes Hands Foundation in 2010, to help promote the positive affect physical activity has not only on a person with diabetes’ blood sugar, but on everyone’s health in general.  It is so simple.  All you have to do is test your blood sugar, exercise for at least 14 minutes, test your blood sugar again and log it over at http://www.bigbluetest.org.  Those people without diabetes can participate also, just minus the blood sugar readings part.  The best part is this:  if 20,000 entries are logged by November 14th, Roche will donate $100,000 to organizations that will provide life saving diabetes supplies to those who need it the most.

 

I know together, we can achieve this goal and help those less fortunate than us while helping ourselves stay healthy.  I’ve logged my Big Blue Test three times already this week.  Have you?

 

 

We Can Do This.

Advocacy, BG Meters, Community, Education, Emotions, Events, Milestones

Happy Friday everyone!  And a happy Labor Day to my US friends too!  I’m not sure how it got to be the end of summer already but here we are … September is approaching and pumpkin is everywhere 🙂

I am taking Kerri’s lead today and posting about a very important issue.  The Strip Safely campaign is well under way.  But there is something else that is needed from us to ensure that the tools we use to manage our diabetes is taken very seriously by the FDA.  They are planning future patient meetings on various diseases and conditions to better understand them.  Don’t you think they need to get a better view of the challenges of living with diabetes and how the tools available play a huge role in that?  Don’t you think since the number of people being diagnosed with diabetes keeps growing and growing, a solid understanding of this disease from the people who have it would help?  I do.  And I’m sure many of you would agree.  So let’s get together and make our voices heard.  Take a few minutes to sign this petition, please.  And pass it along.  We need 5,000 signatures so get to it!

Please sign here.

Three Years Old.

Advocacy, Community, Education, Emotions, Milestones

The big three

The Girl with the Portable Pancreas turns 3 on Sunday.  I cannot believe how time flies.  It wasn’t my start at blogging, as I had already been blogging for my friends at ACT1, but I started my own three years ago.  I am very happy to be able to reach out to people sharing my own experiences and knowledge and be part of such a powerful community.  I hope you continue to read and know that together we can do this.

I will leave you with wishes for a wonderful weekend and some motivation to keep you going strong 🙂

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Strip Safely.

Advocacy, BG, BG Meters, Community, Education, Events

Two posts in one day.  Another first for me 😉

Strip Safely.  This is a fairly new collaboration within the diabetes online community to spread knowledge about the fact that the glucose test strips we use today, yes in 2013, are not completely accurate.  I have known this and it is an issue that bothers me greatly.  I think about all the people with diabetes who are not aware of an issue like this.  Those that are outside of the diabetes community.  Those that take their BG readings for granted.  And it can set someone up for major tragedy.  Since I know my BG meter is not 100% accurate, I always double and triple check if I get a questionable reading.  Too high or too low or totally off from my Dexcom, continuous glucose monitor.  Someone who is naive to meter accuracy, would go ahead and dose insulin based on a questionable reading.  That could lead to an immediate danger of an insulin overdose or not administering enough insulin which could lead to high blood sugar and the subsequent complications.

I don’t want to go back to the days of urine testing where you knew in what “range” your sugar was.  When I was diagnosed in 1981 that was the method used to test glucose levels.  You peed on a strip (similar to ketone test strips) and your urine turned it a certain color depending on how much glucose was in your urine.  Probably from hours ago.  That color represented a range of readings.  When I bolus from my insulin pump today, it doesn’t ask me what range my blood glucose is.  It asks for a specific reading that is used to calculate a precise amount of insulin needed to either correct a high or cover carbohydrates.  Carb counting and insulin dosing can be difficult enough at times without factoring in an inaccurate blood glucose reading.

Every single thing about diabetes management lies in the blood sugar.  How can one possibly manage blood sugar if they do not know with certainty what it is?  The answer?  One cannot.  And when people’s lives are at stake I can’t think of any better reason to campaign for better test strip accuracy and oversight over that market.

Take the time to write a letter to your elected officials. Urge them to attend the Diabetes Technology Society meeting taking place on September 9th.   Tonight on Twitter, there is a special time designated between 8 and 9pm, EST, to tweet about this issue to your elected officials.  They need to be aware of this important issue.  We need support to get this resolved.  Don’t forget to use the hashtag #stripsafely 

Talking with a True Inspiration.

Advocacy, Community, Dexcom, Education, Fitness, Fun, OmniPod

Two weeks ago, I had the pleasure of speaking with Kris Freeman. If you are not familiar with who he is, I hope I can help with introducing a great person in the diabetes community. Kris is a professional American cross-country skier. He was diagnosed with type 1 diabetes (T1D) at 19 years old.

Kris Freeman

(image credit: Lilly Diabetes)  

Kris has been partnering with Eli Lilly since 2002 for advocacy. He wants to teach others “don’t let go of dreams because of diagnosis”.  This year he will be the guest of honor at 10 diabetes camps across the country in conjunction with the Lilly Camp Care Package program.  Kris feels that in a setting such as diabetes camps, people with diabetes can draw together for support and be more mentally equipped to handle the day to day challenges. I could not agree more with him. I have never attended diabetes camp but I have attended other events or just meet ups and have made so many friends along the way.  My attitude or my outlook would not be where it is today without that support, that’s for sure.

I’ve been working out more than usual recently. By that I mean 4-5 times a week for 30-45 minutes. And I felt so accomplished for this. Until I spoke with Kris that is! A basic day for Kris would include about 4 hours of some sort of training. A 2 hour roller ski, an 8 mile run, 2 mile swim. Then when he is training for the Olympics (which are coming up in a few months!) that is taken to a whole other level. He does 100 mile bike rides, 5km road races. Six days a week with only one off day a week. Whoa. Now I’m not a professional athlete but that kind of workout schedule still impresses the hell out of me.

Kris is a fellow OmniPodder and Dexcom user. I could imagine that being an athlete like himself, wearing the pod vs. a conventional insulin pump would be much more practical and easy. I asked him what his favorite site was for the pods and believe it or not, it’s his pecs! Beside his triceps, that is where he most wears his pods.  He never takes a Dexcom break and likes that he can be more discreet, able to check his BG with a glance at the Dexcom instead of having to do a fingerstick among his non diabetic peers.  I think we can all appreciate that!

In addition to using modern technology and heavy duty sports training to manage his BG, he also is a big believer in a high glycemic diet.  He is always thinking about his blood sugar.  I sit on my butt all day for work and think about my BG constantly so I can only imagine that being as active as he is would make me think about it even more.  A rhythmic diet full of fruits and vegetables, high in protein for breakfast and high in carbs for dinner is what he finds works best for him.

One thing Kris said resonated with me very much. He said that diabetes doesn’t go away but learning about it makes it easier. After living with T1D for 31 and a half years, I myself am still learning. And I have to agree that the more you know and understand, the easier it can be to deal with.  After being told to forget about his Olympic goals after diagnosis and dealing with road bumps along the way, it never even occurred to Kris to give up.  That is what makes him stand out.  What makes him a true inspiration.

Thank you so much Kris for taking time to speak with me. It was a pleasure hearing from someone as inspiring as you.  And best wishes for your upcoming endeavor in the winter Olympics!

An Amazing Weekend.

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

I am way overdue in posting this.  I finally had some downtime (see also: being sick.  again.) and figured it was about time I wrote about my time at the Diabetes Sisters Weekend for Women conference at the beginning of this month.  This was my third year attending and you can find my posts about previous years here and here.

Like the past conferences, I had a wonderful time.  I don’t think you can find any more solidarity than being surrounded by about 100 other women with diabetes.  It doesn’t get much better than that 🙂  There were sessions about learning to love exercise from the fabulous Ginger Vieira, how to ignite your diabetes power from the legendary Riva Greenberg, information on dietary supplements and how they affect or do not affect diabetes, the down low on diabetes technology from Amy Tenderich of Diabetes Mine, unlocking the secrets of a long, happy life with diabetes, creating better relationships marriages which was a very open, intimate conversation with the likes of Kerri Sparling.  Our keynote speaker for the weekend was Mother Love.  I admit, I didn’t know much about her before meeting her there.  But let me tell you, she is one funny woman.  She also brought to light for all of us how it is important for us to take care of ourselves.  Something that all of the attendees were doing by attending the conference!  There was also the annual Orange Will walk to start the day on Saturday.  It’s always nice to see a group of people walking for a cause.

Something new this year were offsite field trips – one option was a tour of the Inter-Faith Food Shuttle Teaching Farm in Raleigh and the other option was the Novo Nordisk insulin manufacturing facility in Clayton.  I opted for the Novo Nordisk plant and was so glad I did!  It was phenomenal to see how they manufacture something like insulin, that is a life saving medication used by so many people.  Talk about a high standard of sterility!  It gave me a new appreciation for the people who take their job very seriously to give us that life juice 😉

I honestly think the most valuable thing about this conference is the relationships that are built.  The friendships that are made.  The deep camaraderie that is felt.  The entire weekend concentrates on how to make you better.  How to make your life as a woman with diabetes more manageable.  How to help you feel less alone.  And living with diabetes, who doesn’t need that?

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In case you missed the conference in Raleigh, or live closer to the west coast, there is also a conference coming up in October in San Francisco.  Check it out for more details.

Day Seven of Diabetes Blog Week, 2013.

Advocacy, Community, Events, Fun

So it’s officially the last day of Diabetes Blog Week.  I tried really hard to keep up every day but got a bit lost toward the end, resulting in missing two days of posts.  Thank you so much Karen for organizing this event, getting us to put our thinking caps on!

If you want to read all the great posts for all the topics (ya know if you have quite a few hours on your hands!) check out this link: Diabetes Blog Week 2013

I’m actually going to go back a day to Day Six’s topic.

This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play. These are just a starting point today – there are no right or wrong ways to get creative!

Now I don’t consider myself very creative.  I’d say that my favorite form of art is photography.  So many photographs are quite beautiful to take in.  I think a picture can tell a story without the terminology.  It can evoke emotions unlike words sometimes.  And they can portray a wonderful moment in time that you always want to remember.

One of the greatest things about the diabetes online community is that it comes to real life at times.  Those times that I get to spend, in person, with my diabetes friends is invaluable to me.  The support and and camaraderie from everyone out there helps me keep my head straight a lot of the time.  And whenever I can relish those relationships offline, it is always a good time to remember.  The pictures below are from the Diabetes Sisters Weekend for Women conference that I attended two weeks ago.  The first is of all the women who attended and bonded that weekend.  The second is of all the attendees who were able to make a visit to the Novo Nordisk plant to see where insulin is manufactured.  These moments for me, are always etched in my heart.

Weekend for Women.

Novo Nordisk Plant.

(photo credit goes to Diabetes Sisters)

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Another order of business that I have been meaning to mention here.  Sanofi is supporting the Diabetes Hands Foundation – when this documentary reaches 10,000 views, they will double their initial $10,000 sponsorship.  It’s a great documentary and I’m hoping you’ll take a few minutes to watch yourself.

Strength in Numbers.

Day Four of Diabetes Blog Week, 2013.

Advocacy, Community, Complications, Education, Events, Milestones

diabetesblogweek2013

A day behind but here is my post for day four of Diabetes Blog Week.

We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you’ve made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small – think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.).

I’ve given this topic some thought over the past few days.  So much has changed over the past 31 years, mostly for the better, with accomplishments along the way.  I found it hard to pick just one thing.  The first thing that came to mind was my more recent A1c track record of being under 7%.  Then there is my retinopathy not progressing over the past 18 months.  Or walking about 3 miles with excruciating pain in your legs and numbness in your feet from neuropathy seems like quite an accomplishment at the moment.  Even exercising 4 times in one week can seem like something to be proud of for me.  There are even the graphs of 24 hour no hitters on my Dexcom.  I certainly celebrate all of those!

What I came to realize is that all of these things together is what my accomplishment truly is.  Living with diabetes for 11,452 days and doing pretty well.  Going through the motion of checking BG, dosing insulin, counting carbs multiple times a day, every single day.  Forcing juice down my throat when I feel like I’m going to puke to keep myself alive.  Moving along with my day when my blood sugar is high and all I want to do is drink, pee or sleep.  Keeping up with routine endocrinologist appointments.  CDE appointments.  Eye doctor appointments.  All the other diabetes health related appointments.  Picking up prescriptions every few weeks or month.  Keeping tabs on insurance coverage for said appointments and prescriptions.  And doing all these things for so long without losing my mind.  Even finding happiness between the lines.  Not to mention making tons of great friends along the way.  This is what I have accomplished and it feels pretty darn good.