All posts by Stacey D.

Diabetes History.

A1c, BG, BG Meters, Complications, Emotions, Endocrinologists

Unfortunately I’m not talking about some major breakthrough in the research for a cure or some mind blowing new product on the market.  I am referring to history that was made yesterday in my own diabetes world.  I had my quarterly appointment with the endocrinologist but it was also my annual physical with her, so a much more comprehensive exam.  As usual, I was nervous.  I hate that I get nervous every time I see her but I can’t seem to help it.  Thankfully yesterday was probably one of my best appointments.

I had printed out my BG readings for her, in all sorts of different report variations, from downloading my OmniPod PDM the night before.  In scanning over them, I wasn’t too pleased with what I saw.  In the past month, my BG was in the 80-180 mg/dL range only 61% of the time.  180-250 was 23%, over 250 was 5%, 60-80 was 9% and under 60 was 2%.  In other words, higher than I would have liked.  My last A1c test was done at the end of April so I was overdue for my normal 3 month routine.  That last result was over 7% and had crept up .2% since the time before that.
As I’m sure I’ve mentioned before, in the past 5-6 years, I have been much more diligent with my diabetes management.  Between going on the pump, testing more frequently, using the CGM uninterrupted for the past 3+ years, keeping up with my appointments with the CDE, trying to stick with a regular exercise routine.  Despite my efforts though, I have only had an A1c under 7% once.  Four years ago.  And to this day I still think it was a mistake!  However, yesterday it happened again.  Since I am not shy about sharing my A1c levels , it was 6.7%.  (although it seems much easier to share when it’s a good result!) I literally hesitated for a moment when Dr. K said it and I said to her “wait, what?”  It was a complete shock.  My overall BG readings have not been much better or worse than they usually are.  And especially after feeling that my readings have been higher than I’d like, having almost a 1% drop was not at all what I was expecting.

I was almost too happy to care at the moment about why.  But later I really started thinking about it.  And honestly the conclusion I came up with is that I wish I knew what I had done right the past 4 months so that I could keep doing it!  I’d say in the past 4 months I’ve been more consistent with exercise than before.  Yet I wouldn’t say I’ve been consistent ALL the time.  (the past 2 weeks for instance have lacked exercise big-time)  So the only thing I can think of that had such an impact is my choice of BG meters.   When I used older One Touch meters and when I first started using the PDM with the Freestyle strips earlier in the year, I always thought the readings ran low.  Since switching to the newer Verio IQ as my primary meter and more recently changing the calibration code on my PDM, my readings run higher.  Could this be the magic trick?  Is there a scientific reason this could be?  I’m not sure and I guess I shall see if this trend continues.  And I sure hope it does.

In other news, I have lost some feeling in my feet but this I knew.  At my physical exam last year, Dr. K saw this and sent me for an NCV test which came back normal.  Yesterday was the same – I stopped feeling the vibration on my feet from the tool thingy (tuning fork?) before it actually stopped vibrating.  I do get major pain in my legs when I walk so she had them do a Doppler test.  Which also came back normal.  So the feeling loss in my lower extremities does not appear to be from nerve damage or circulation issues.  While I’m glad it is not for those reasons, I’m stumped as to what it could be from.  Something else I will keep monitoring.

Good appointments like this leave me feeling happy, naturally.  And hopefully not so nervous for the next one.

Patriot Day.

Emotions

Every year, on the anniversary of 9-11, I do not feel right carrying on my day as usual.  My thoughts, and everyone’s thoughts, are all about what happened on that day.  And rightfully so.  As much as we as a nation came together and fought back, things will never be the same.  Just the sound of that date being spoken brings back all the memories.

I was working in Manhattan that day but fortunately not close enough to where the attacks happened.  It still was close enough to feel very frightened.  To feel betrayed by human kind.  To feel violated.

I cannot grasp the terror the people in the presence of those attacks suffered through.  I cannot comprehend that people actually planned those acts of violence.  I cannot fathom the loss people endured when starting that day like every other.  And I cannot understand that people are still losing their lives from things like cancer.

Today I will have to carry on.  I will have to sit in my office to file reports with regulators this morning.  I will have to attend my annual physical appointment with my endocrinologist later on.  But my mind will be somewhere else.  It will be trying to remember and honor all the innocent people who lost their lives that day.

A Good Cry.

Complications, Emotions, Sickness

Wow.  When you haven’t cried in a while and something sets you off, it’s kind of hard to stop.

That was pretty much my night last night.  The reason I was crying was because I was relieved.  But I was also very angry.

I was having discomfort in my chest.  It started when I woke up in the morning but subsided pretty quickly.  Then later in the day, it came back but was pretty bothersome.  It was high in my chest, beginning toward my shoulder but then more toward the center of my chest, by my sternum.  It hurt more when I moved which lead me to believe it was muscular or something like that.  However I couldn’t help but wonder if it was something more serious.  Like heart related.  The only history I have of any heart related issues is high blood pressure.  It’s only been borderline high, not excessively high, and I’ve been on medication for a number of years.  I’ve also had normal EKGs for years.  However I have never had a full heart “check up” before.  I’ve put on some weight over the years and am not exactly in the best physical shape ever.  Most importantly, I’ve had diabetes for going on 31 years.  That is a long time of high and low blood sugars.  This is what scares me the most.  And that is why I was angry.

It was because I have diabetes that lead me to going to the urgent care near me and getting checked out.  I wanted to be safe than sorry and I think Joe felt the same.  (He is the one who persuaded me to go) But had I not been a diabetic, I would’ve brushed the discomfort off and waited to see how I felt in the morning.  Last night I hated diabetes for what it can do to your body.  I hated it for making me worry more than the next person.  I hated it for reminding me what my father went through.  I hated its very existence.

Thankfully the EKG came back normal.  The doctor seemed to think it was something called Costochondritis, which if you’ve never heard of it like me, it is inflammation of the junctions where the upper ribs join with the cartilage that holds them to the breastbone or sternum.  Yup some more inflammation.  He prescribed anti-inflammatory medication and did recommend I see a cardiologist at some point.  I will discuss this when I see my endo next week.

I don’t get out of sorts about diabetes often.  But last night I did.  And it felt so good to cry it out.

Deep Sympathy.

Community, Emotions

I haven’t posted about this yet because I’m really not sure what to say.

In my life so far, I’ve lost all but one grandparent.  An aunt.  Friends.  My mother in law.  My father, even, which hurt deeply.

But I do not know what it’s like to lose a spouse.  Someone who is your best friend.  The father of your children.  Your soul mate.

September 2nd , Meri had asked everyone to set aside that day for praying and fasting for Ryan’s recovery from his battle with cancer.  Instead he lost the battle and gained eternal peace.

It is times like these that I wonder why.  The Schuhmacher family already has to cope with 3 children living with type 1 diabetes.  Shouldn’t that be enough?  Sometimes life just isn’t fair.  But those thoughts aren’t even coming from Meri.  Those thoughts are coming from me.  I admire her for her strength and courage.  But no one could possibly go through something like this without help.  That is where we come in.

Please visit this page and make a donation, no matter how small, to help such a wonderful family.  They both offered so much to others, in terms of support and inspiration and kindness.

Give Forward

Although I never met the family in person, they are a part of the diabetes community that is like a family to me.  And my heart goes out to them just the same.

I am praying for them every day.

(image credit: Our Diabetic Life)

Friday Happenings.

Advocacy, Community, Events

Happy Friday everyone!  I don’t know about you but I’m hoping the day goes by quickly so that the weekend can begin 😉  I just wanted to take a few minutes to share some things that are going on in the diabetes community or coming up before we know it!

First off, tomorrow, August 25th, marks the two year anniversary of this here blog.  I cannot believe that two years has gone by already.  I’ve enjoyed writing and sharing very much over the past two years and I hope my contribution to the diabetes community has proved useful for others.  Thank you so very much to my readers, old and new, for making it what it is today.

Tomorrow is also HFCS-Free day.  Leighann from D-Mom Blog proposes that we take tomorrow to make a conscious effort to avoid any food containing HFCS (high fructose corn syrup).  I have more recently become aware of how many foods containing this ingredient and try to avoid it as much as possible.  Mayo Clinic lists some of the possible adverse side effects.  I think it’s a great idea and you can read more about it here at her blog.

Second, in just one month, Diabetes Art Day 2012 will take place.  This initiative was started by my friend Lee Ann in 2010 to create opportunities for people all around the diabetes community to share their story of life with diabetes though creative visual expression.  It is fun!  And easy too.  All you have to do is create any kind of artwork that reflects your diabetes life and share it on the Diabetes Art Day website, Twitter, Facebook, with your loved ones, etc.  Go ahead and put your thinking caps on!

Thirdly, World Diabetes Day is coming up as well, in November.  Another initiative spearheaded by Lee Ann is the WDD Postcard Exchange.  This was started last year in an effort to connect people with diabetes all over the world and raise awareness during Diabetes Awareness Month.  Another fun and easy event, all you do is register on the site, wait to be emailed your recipient’s mailing information, make a wonderful postcard, send it to your recipient and wait to receive one in the mail as well.  Registration is now open for 2012 so head on over to the site and sign up!

Fourthly (is that a word??), Kerri hosted a great post from Harry yesterday about his new adventure of starting a new chapter of InsulinDpendence in Charleston, NC.  If you haven’t heard of them, they are a large (and still growing) group of people who inspire people with diabetes to set personal fitness goals, educate on adaptive management strategies through experience and equip to explore individual capacities.  Pretty cool considering a lot of medical professionals out there do not know how to advise patients on that sort of thing.  I had the privilege of meeting some members of the organization in the winter at the JDRF Research Summit.  Wonderful, inspiring people.  If you’re in the Charlotte area and are interested in helping Harry get a new chapter off the ground, email him at CLT.Insulindependence@gmail.com.

Last but not least, Manny has already begun promoting the 2012 Big Blue Test effort that will be announced in October.  Between 2010 and 2011 more than 10,000 people participated in testing their BG, getting active for 14-20 minutes, then testing BG again.  This raises awareness of the positive effect physical activity has on diabetes management.  This year, they are hoping to make the effort even bigger, with Roche Diabetes Care sponsoring the Big Blue Test once again, to help touch even more lives.  So be on the look out for the official announcement and don’t forget to get your big blue test on!

I hope the weekend is a great one for everyone 🙂

Logging Made Easier.

BG, CDE, Endocrinologists

If there is one thing I do not do well as a person living with diabetes, it is logging.  Anything.  When I see my endocrinologist every 3-4 months I just download my BG readings from my meter(s) for the past 30 days, print it out and present it to her.  She is fine with that.  When I see my CDE however (alternating between her and the endo), we go over my readings in more detail.  Since she has the “clinical” software in the office, she downloads both my Omnipod PDM and my Dexcom data.  The one thing that is helpful for these appointments with M is to keep track of events such as food intake, exercise, illness etc.  Sad as it may be, there is no way I can remember what I ate or how I felt last week!  So I usually log these things for about a week prior to my appointment.  What I’ve been doing for the longest time is keeping a self made Excel spreadsheet with this information on it.

My next appointment with M is next week so it dawned on me that I needed to start logging.  However I was frustrated with the good ol’ Excel file and was trying to find another app available to keep track of such info whether on my iPhone or on the web.  Since I already have a few diabetes related apps on my phone, I did some scrutinizing.  It turns out that the iBGStar app is working well!  (side note: I do have the meter but do not currently use it)  It is still a form of data entry since I’m really only entering information when I eat or exercise or don’t feel well but it’s easier for me to use since believe it or not, I am not always near an Excel workbook.  The key to entering the actual food I am eating, and not just that I ate fatty food or miscalculated carbs, was to add a new note.  The option is already there to add BG, amount of carbs and amount of insulin.

I especially like the way it is presented in the report when you compose data to send via email.  Now I am not sure I will actually email her my logbook since that office is anti-email unfortunately but I can at least print it out for her.

I remember the days of having to write down my BG readings before a doctor appointment.  I do not want to go back to those days.  Ever.  Having apps like these is extremely helpful.  Especially for someone like me who hates logging with a passion and will find every excuse not to do it.  Now if only I was able to email the health care providers in the office I go to.

Giveaway Winner.

BG Meters, Roche

There were 7 commenters willing and eligible to be entered into the “drawing” for the meter giveaway.

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The winner of the Accu-chek Nano meter is: T1!! Congratulations!! Please send me an email at staceydblog@gmail.com with your address so that I can ship it to you. I hope you like it 🙂

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Roche Summit Part 3. Advocacy.

Advocacy, Community, Education, Events, Roche

This post is probably the most difficult to write and I think the most important – finding the right words to describe something as elaborate and essential as diabetes advocacy can be challenging.

First off, being among some of my diabetes family on the 9th anniversary of my father’s passing (due to diabetes complications) was surreal. Here I was, in a room full of 30+ others whose lives are touched by diabetes and representatives of a company whose aim is to make those lives easier. A connection that I didn’t know existed just 9 years ago. Something that was totally unimaginable during his time I’m sure. I couldn’t help but reflect on how things could have turned out differently for him had support like this existed.

Rob and Todd presented to us the Welcome to Type 1 video. If you have not yet seen this video, watch it. It so precisely portrays how attitude has everything to do with how to best cope with living with something like diabetes. It also illustrates how diabetes, unlike other chronic health conditions, leaves most of the care to the patients and not the healthcare providers. For this very reason, it becomes crucial for the patients themselves to advocate for the rights and well being of people living with diabetes. What is advocacy? By definition, health advocacy supports and promotes patient’s health care rights as well as enhances community health and policy initiatives that focus on the availability, safety and quality of care. I don’t see myself as an innovator in the diabetes community. I do not come up with the exceptional ideas that others do or write remarkable books. But I do love to help collaborate on initiatives, provide my extra supplies to those who need it more than me, spread the word of current or future events, connect people, fundraise and donate to diabetes organizations, help introduce new products, share my own story and of course retweet 😉 By doing these things I can achieve forms of advocacy.

Hearing Josh say that “everyone has a bomb in their life that goes off at some point” and “it’s therapeutic to give back” couldn’t have been said better. For most of us, the bombs are the daily struggles of diabetes. For a lot of us, we consider social media a form of therapy. He thanked us for what we do. For providing advice on the little daily things of living with diabetes to people who have questions. For letting others know that normal may not be what you think. For showing that living with diabetes is hard but moving forward is important. When I get emails or comments from readers thanking me for a particular post or telling me that my father would be proud of me for my actions, it touches my heart with a sense of accomplishment. I reached someone and hopefully made a difference to them.

Yes, Roche initiated a gathering of diabetes online community members to discuss how to fill the gap between patient needs and their own company’s contributions.  Did they do it lavishly?  Sure.  Were all the extras completely necessary?  Of course not.  But regardless of how lavish the locations are,  these opportunities are invaluable to help us communicate what is important as a strong group.   However, even without these summits, we are still needed to tell the public just what diabetes is all about. To bust the myths that are endless. To fight for more affordable supplies. To let people all over the world know that they are not alone and you can do this. We are the experts.