Wednesday, March 28, 2012

Good News to Share - A Disclosure

I’m pleased to be able to share some news today, some news that I’m very excited about!  You might remember that I wrote a guest post for the Medtronic blog, The Loop, back in February.  At the time, we were finalizing a contract, and now that it’s set I’m thrilled to share a disclosure with you!

contractI have signed a six month contract to contribute some guest posts for Medtronic, to be shared on The Loop or other Medtronic materials.  I will also be placing a Medtronic ad on my blog.  In exchange, Medtronic will provide me with the supplies I use for my pump and my continuous glucose monitor.  (I already have a Revel pump with the CGM transmitter - I will be receiving the disposable goods associated with their use.)

I’ve been using the Medtronic pump and CGM for almost four years now, and I’ve always been extremely happy with the performance and also with customer service.  For these reasons, I feel my contract with Medtronic is a good fit, because I’m already using the products I’ll be writing about.  Of course, my opinions (as well as this blog) are my own and I will always be honest with you when I share my opinions, both good and bad.  This agreement won’t bring about any changes on Bitter-Sweet, aside from the ad I’ll be placing and the fact that I will (hopefully remember to) mention this disclosure agreement in any posts I write about my pump and CGM.

Obviously, with both Pete and I still job hunting, it is a big relief not to worry about supplies for the CGM and pump for now.  But beyond that, I’m so excited and thankful to have the opportunity to share my perspective with the Medtronic audience.  I’m proud to add this new chapter to my diabetes advocacy.

As long as I’m in Disclosure Mode, I should mention that I’ll be leaving tomorrow for the second Medtronic Diabetes Advocate Forum.  I was invited to this event last year as well, and once again Medtronic will be covering my flight to and from L.A. and my hotel and meals tomorrow and Friday.  I have not been asked to blog or tweet about the forum - but I most likely will as I predict I’ll come back with lots of interesting things to share.  And now, even though I despise packing, I suppose I should go get that done!

Tuesday, March 20, 2012

To Tell or Not To Tell . . . .

Diabetes Social Media AdvocacyFor the most part, diabetes is an invisible disease.  Pumps are not always easy to spot, calloused and freckled fingers can easily go unnoticed, and unless you whip out your syringe or pen for a public MDI those around you usually don’t know you have diabetes unless you share that information with them.  With this in mind, the DSMA Blog Carnival posed the question:

Does your employer/school/friends know you have diabetes?  Why or why not?

These days I certainly fall on the side of diabetes-oversharing, if there is such a thing (I kind of pretend there isn’t).  It not unusual for me to discuss diabetes with complete strangers.  But this wasn’t always the case.  I was diagnosed when I was 11 years old and, like most teenage girls, I desperately wanted to be just like everyone else.  And so, I did all I could to hide the fact that I am diabetic.  I ate what everyone else ate - even though back then I was supposed to be on a strict eating plan.  I hid in the bathroom to test my blood and take my injections, or I just waited until I was back home in the seclusion of my bedroom to do them.

When I left for college, I decided I’d turn over a new leaf and I’d tell everyone that I had diabetes.  That went well for about the first few months or so.  But then, I once again wanted to be a “normal” college kid.  I wanted to drink beer at a party (even though I hate beer) - and at that time I believed people with diabetes couldn’t drink.  So while I didn’t exactly hide my diabetes, I also didn’t talk about it  much because I felt I was doing a lot of things I wasn’t supposed to be doing and I hated when people asked me about it.

Graduating college and going out into the adult world didn’t mean I became adult about having diabetes.  Nobody at work knew, and I went back to testing and injecting in the bathroom.  Until one day, when I got really sick and ended up in the hospital.  I decided it was time to start getting serous about taking care of myself, and that it was time to stop hiding diabetes.  I told my closest friends, who were supportive and understanding (and also pretty shocked to find out I had hidden it from them for years).  As for my co-workers, I told a diabetes half-truth.  I let them believe that I was newly diagnosed during my hospital stay.  I know it sounds crazy to replace one lie with another, but in my mind it was a good way to be open about diabetes without the shame of admitting I had hidden it for years.

I didn’t truly feel comfortable letting people know about diabetes until I found the DOC and became friends with other diabetics.  Finally I understood that having diabetes didn’t make me broken or less of a person.  I learned how to take care of myself and still enjoy things like pizza and chocolate and martinis.  I felt empowered as a patient and I felt the need to blog and share and advocate for all people with diabetes.  And now, I just dare anyone to try to get me to shut up about having diabetes!!

This post is my March entry in the DSMA Blog Carnival.  If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/march-dsma-blog-carnival-2.

Monday, March 19, 2012

Complications, Luck and Guilt

It’s been about four years since my ophthalmologist first found some tiny bleeds in my eyes.  And by “tiny” I mean so minuscule that I just need to go in every six months for a dilated exam to keep tabs on their status.  Each time I go in, Dr. C either finds no change at all or finds that one leak has cleared up but another itty bitty leak has formed.  Thursday it was time to go in again, and I’ll admit I was feeling very nervous about what she would find this time.  Because honestly, lately it feels like I’ve been getting more bad news than good, and so I’ve got quite a pessimistic outlook these days.

EyeDoctorThis time, however, the news was good!  Really good!!  Both eyes are now 100% clear of any leaks and bleeds or any other problems other than my astigmatism and extreme nearsightedness - neither of which are diabetes related.  Although Dr. C feels we could go back to yearly dilations, she prefers that I continue to come every six months.  This is because I’ve been diabetic for such a long time, and she’d really like to catch any problems as early as possible. Now let me tell you, I really despise getting my pupils blown up as large as they can stretch and then being forced into what feels like the equivalent of staring straight into the sun on a clear summer day.  But I do agree with Dr. C about catching things early, so I made my appointment to go back in September for more torture my next exam.

As I left the office, something Dr. C said stuck with me.  She said “Although you’ve had diabetes for so long, I’m not that worried about you because you have such great control.”  That statement has been nagging at me since last week.  While it’s true that my A1Cs have been just where we want them to be for almost four years, that doesn’t mean my control is always great . . . .  because as we all know, a bunch of crappy numbers can still average out to an okay A1C.  But even if we assume that I did have great control since 2008, that certainly doesn’t make up for the 20+ years I spent with less than stellar (to put it mildly) control.  With this in mind, I told her that I think the whole complication thing comes down to a little hard work and a whole lot of luck.

For me, this is where the Major Complication Guilt sets in.  I’m very glad to be fairly complication free after 32 years with this disease.  I'm overjoyed that my eyes are in great shape once again.  It really is quite a blessing - but that makes me feel guilty because it’s a blessing I don’t feel I deserve.  I have plenty of friends who have worked much harder than I did over the years, and yet they are battling complications from this beastly disease.  Why them?  Why not me?  And why does diabetes have to pile on a boatload of guilt along with all of its other garbage??

Thursday, March 15, 2012

Observations from JDRF Government Day

So it’s been over a week since I returned from D.C. and my very first JDRF Government Day.  A week filled with WTF blood sugars, lots of mopey and cranky moodiness, and an icky virus - all impeding my ability to write a coherent post on the magic that was Gov. Day.  So maybe a rambled bullet list of highlights will have to do.
  • Busy is good - especially when you feel overwhelming home-sickness.  Our schedule was pretty packed from the time we arrived to the time we left, but I really enjoyed that.  For some reason I was very home-sick on this trip . . . . even before my train had left Connecticut I was missing home.
  • Diabetes is a strong bond.  I think part of the reason I felt so home-sick was because I didn’t know anyone at Gov. Day - beyond some emails and phone calls.  Meals with large groups of strangers usually aren’t in my comfort zone, but weirdly enough I didn’t feel like anyone was a stranger.  We all either had diabetes or love someone who does, and somehow that makes an instant friendship form . . . . especially when you need help buying your Metro ticket because your blood sugar is 47 and you can’t work the machine.
  • Bloggers will always somehow find each other.  As I walked to the elevator for breakfast my first morning there, I met up with a woman named Kathy who I had seen at the “newbie session” the day before.  As we sat together eating and chatting, the subject of pumps came up and she said she used to use an Animas.  When I asked if she had gone back to MDIs, she told me she had an islet transplant and I was like “Oooohhhhh, wait, I KNOW you!!”  It was Kathy from My New Islets - whose blog I had recently commented on saying I hoped to meet her at Gov. Day!!  Soon after, to  my delight, Type 1 Advocate Gramma came over and introduced herself.  We also ran into each other at lunch on The Hill, and she was smart enough to get a picture (which I’ve shamelessly stolen).  She is awesome! GovDay
  • Introductions are powerful and will make me cry.  That first morning we went around the room and each told a little bit about ourselves, and it was amazing.  (It may have been my favorite part of the whole weekend.)  There were people newly diagnosed, and people living with diabetes for 40 or 50 years.  There were parents with one or multiple children and grandchildren with diabetes, and some who had lost their loved ones to the disease.  There were spouses and siblings and pregnant diabetics.  There was a pump company employee who hopes to be out of a job one day because diabetes has been cured.  We were a varied mix of people touched by diabetes, but each and every story was a huge inspiration and will stay with me for a long long time.
  • I’ve never considered myself much of a fundraiser, but government advocacy can raise more funds than you’d ever imagine.  Our mission in D.C. was to lobby our representatives to support the renewal of the Special Diabetes Program.  Renewal of its two parts will ensure $150 million for research to prevent and cure diabetes and its complications, and $150 million in diabetes funding for the Native American population.  Not.  Too.  Shabby.capital
  • Does the thought of meeting with political big-wigs make you shake in your shoes?  Me too, but I now realize how silly this is.  Our representatives are just people, and since they represent us it is their job to hear about our needs.  You are the expert on life with diabetes, and JDRF provides the political information you’ll be discussing and does a terrific job training you on how the meeting will go.  (Shout out to JDRF Government Relations manager Neils Knutson and his session “What to Expect when you’re Expecting . . . . to meet with your Representative” for giving us first timers all the info we needed!)
  • Would I change anything about the experience?  Well, just a few minor things.  I wish our hotel had been more central to D.C. - we were out in Arlington, Virginia and getting around was kind of a hassle.  Shuttle service didn’t exactly run on schedule and the Metro can be difficult for a first timer (especially when dealing with a low blood sugar, as mentioned above.)  Cabs were an option, but would not be reimbursed.  I’m all for keeping overhead low to allow for more money to diabetes research, but as a volunteer with a very tight budget (since Pete and I are still unemployed and keep getting turned down for everything we apply to) it was tough to worry about choosing between getting lost in D.C. with a low blood sugar or spending money on food and transportation that may not be reimbursed.
Before I knew it, I was back on the train home and looking forward to seeing Pete and K.C. and sleeping in my own bed.  That’s when it hit me that OMG I actually lobbied to Congress on Capital Hill!  I guess I’m no longer that shy girl who never spoke in class and went to great lengths to hide diabetes.  And that’s why I mean it when I say “life with diabetes isn’t all bad “.

If you’d like to become a JDRF Advocate, you can sign up at http://advocacy.jdrf.org

Wednesday, March 7, 2012

Wordless Wednesday - Strips

FruitandStrip
Those strips end up in the strangest places . . . .  like on the bottom part of the fruit bowl (which is actually a punch bowl but we don’t really drink punch!!)

Monday, March 5, 2012

Friday Night Mishaps

Friday it was time for both a site and sensor change.  I did both right before lunch and decided not to start my CGM right away since it would be asking for a calibration too soon after I had eaten.

This is where things started to go wrong.  The afternoon came and went.  I realized I was very thirsty, but didn’t think much of it because my CGM hadn’t alarmed me of a high.  Why?  Because my CGM wasn’t ON, but I had forgotten that.  So I tested and was not happy with what I saw.  320!!!!  I had indulged in some mini-doughnuts earlier in the afternoon, so I figured a carb miscalculation was to blame for my sucky number and bolused a big correction.  One hour later I saw this . . .

IMG_0507
So not cool!!!!!  I decided something must be wrong with the new site, so I pulled it.  My cannula was kind of bent at a weird angle, so I took a correction by injection and then popped in a new site.  I also bumped up my basal to help get things moving in the right direction.

And it worked . . . it worked much too well.  Here is what I saw an hour later . . .

IMG_0509
Oh crap!!!!!  And I had a ton of insulin on board.  As far as I can figure, I must have gotten quite a bit of the first correction bolus, even though my cannula looked pretty bent.  It was stupid for me to pile on a big correction by injection and bump up my basal - but I just wanted to come down so I could enjoy Friday Night Pizza and Martinis with Pete.  Instead I got a big scare and ate a bunch of empty calories to keep my blood sugar from bottoming out.

Diabetes is tough.  Sometimes we do things that don’t work out.  Sometimes we make poor decisions because we just want to enjoy our night.  I really screwed up this time - but hopefully I’ll remember this and do much better next time.

Sunday, March 4, 2012

Miracles . . . .

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A very good friend of mine and her family are in need of a miracle and have asked for prayers - especially today.  Please add them to your prayers and keep them in your thoughts.  Thank you.

Thursday, March 1, 2012

Promises, Advocating and D.C.

One of the important parts of my position as the volunteer Advocacy Team Chair for my local JDRF chapter is to set up Promise Meetings with our district’s Congress people so advocates can tell their stories to our representatives and ask that they remember us when they go back to D.C. and vote on diabetes issues and funding.  The first of my two Promise Meetings happened last fall, and I completed my second one last week.

PromiseMeetingDeLauro

I’m lucky because the Congress people in my district are very supportive of diabetes issues and funding and they enjoy participating in Promise Meetings and hearing our stories.  I’m also lucky because my JDRF chapter is filled with a fabulous group of advocates.  I always have high hopes and expectations for our Promise Meetings, and the advocates who attend always go above and beyond.  It’s exciting to see the stories we tell making a real impact on the Representatives who will be back in Washington voting on things that are so important to our diabetes lives.

So my first Promise Meetings are all finished up . . . .  so what is next?  Well, on Saturday I’ll be heading down to D.C. to participate in my first JDRF Government Day (which is actually four days).  I’m very excited to meet JDRF advocates from around the country, as well as the JDRF Grassroots Team who has been teaching me the ropes of my Chair position.  I’m a little bit nervous, but I’m sure I’ll come back with tons of new ideas and inspirations.  I’ll be attending two days of sessions and training, and then I’ll be up on the Hill meeting with our representatives to talk about diabetes. 

I'm also really looking forward to the Research Update on Monday morning, which will be broadcast live via the JDRF USTREAM channel.  If you’re interested in catching the Research Update too, you can get more info from the Juvenation blog.

I love being a blogger and connecting with our community to support each other in our diabetes journey.  But I’m also starting to understand just how important it is to advocate to our government officials so they support funding for diabetes research and agencies like the FDA and the NIH.  If you’d like to become a JDRF Advocate too, you can sign up here.