Rebelbetes

I have this friend, who I've written about before, who inspired me to start this blog (without really knowing it) and who I've been trying to get to guest post here for quite a while.  (She's the one who convinced me to run 10 miles too,)  She just graduated college though, and I always said "when you have time."  Well now she has time.  Enough time even, to start her own blog.  She recently joined twitter, tries to get to #dsma chats if I text her early enough, and now she's jumping in with both feet to the blog arena.  Head on over and welcome her!

D appointment

I did today's post a little differently than I normally do.  Yesterday was latest "endo" appointment, and there were a lot of emotions swirling around in my brain.  So I wrote the beginning of my post before I left.  I didn't know where my emotions would be post appointment, and I wanted to be able to accurately capture all emotions included both before and after this appointment. 


Before:

Today I have an appointment with my D nurse.  I'm excited for this appointment.  I know, it sounds crazy.  But for the first time in a LONG time, I think I'll have an A1C under 8.  And I think the last time that happened was when I saw her and when I had the first one.

But I also have a list of questions I need to ask.  The first being about seeing an endo.  Since I had such an awesome endo as a kid, I feel as though that is the right path.  I won't stop seeing my nurse, because she's awesome.  But there's just something in me that thinks I should also see an endo.

And then the fun questions.  When I was skiing, my 3rd and 4th toes of my right foot got tingly.  I think it only happened in the chairlift, and skiing down the mountain made it go away.  But I still don't like that feeling.  BUT, it could be because my toes are in a tight, enclosed space.  And cold.  Please pray that that is what it is.
But my feet also get tingly when I sit cross legged.  And I sit cross-legged all the time.  I know that sitting like that can enhance neuropathy.  But it's such a habit.  And even sitting here writing this I'm cross-legged.  I am trying beyond anything to stop sitting like that, because it's the only time my feet get tingly.  But Diabetes, PLEASE don't be the cause.  Please let this go away if I stop crossing my legs.  When I get the little pokey thing on my foot, please let me feel it.  Please don't make me walk away crying.

And just this week I wasn't feeling like I was at the top of the game, and as I went to bed Sunday night I realized that I have the classic Celiac symptoms.  This is the one that is most pressing on my mind at the moment.  I have friends and family who have this, so I've certainly eaten this way before, but not as a lifestyle.  Yesterday I tried to eat gluten free to see if my symptoms stayed or went away.  And guess what, they went away.  I know that one day doesn't prove anything, but it's certainly leaning in that direction.  There was more around that was gluten free than I thought there would be, but then as I was getting the kids snacks ready, I just grabbed a piece of cereal (before the milk was in it) and ate it.  If this ends up being a new "thing" for me, that is going to be one of the hardest parts.

My thoughts going into this appointment: C'mon diabetes.  I'm working at this again and now you're going to shove all this at me?!

After:


I AM KICKING DIABETES' ASS!  Yes, I need to tell you about the whole thing, but first, my A1C is 7.2!  At my last appointment it was 8.1.

I go in and do all the boring things (blood pressure, weight(it went up slightly, but I blame the rain boots and jacket), BG test and blood for A1C) and they take my pump(s) to download them.  (And I hope you didn't want a waiting room picture because I never was actually in the waiting room.)  When I was done with her, I went to wait in the exam room and I didn't even time to tweet that I was there before my nurse came in.

She asked how I was, what my basals were, which led to talking about switching pumps and how the meter remote was my deciding factor, waiting for my pumps and their reports to come back and if there was anything else I wanted to talk to her about.  I told her how I had been experiencing a few Celiac symptoms lately (my guess is that it's been a few weeks) and how on Tuesday I ate gluten free and I did not experience the symptoms.  I wanted to make sure she knew that I was not self-diagnosing, but it was the best way for me to test my theory in such a short period of time, and that I would just like to get tested.  I wasn't going to need labs today, but I think that is worth knowing.  She informed me that there are also people who are not Celiac, but have a wheat intolerance, so I may just want to cut back.  This is something I have been trying to do, but now I think I just need to focus on it a little bit more.

We continued on and she asked about my feet, so I told her my tingly feet experiences, and she did the metal vibrating tool thing on my big toe and it felt like forever before I could stop feeling.  She said she does not think I have neuropathy, it's just that when I cross my legs my blood vessels are getting squished causing my feet to feel funny.

And then my pump(s) came back with a ton of print outs and we realized that I've been going high before lunch, so we increased my breakfast insulin:carb ratio.  I told her how I was going low post lunch (a time when I'm frequently getting in the car) so I changed my basals without doing a basal test, but I'm not going low anymore.  Tuesday and Wednesday morning I woke up high, but Monday night I was eating a lot and SWAGing, so I didn't count that as a high BG in the morning, but an unsuccessful SWAG.  She agreed.

And then she said, "let's check your A1C."  And she squealed.  "Are you ready?" as she turned her computer screen to me.  But I couldn't find the number!  And she told me..."7.2"  And as I stammered through composure and smiling and a whole lot of happiness I heard "Look at what YOU did!!"  (And this statement reminded me of something I think George's doc would say)  And I managed to tell her I haven't been this low since before I started college.  If you don't me well enough and want a reference point, that was 2003.  And then even better, "I hope you're going to celebrate tonight!"  I don't know if I squealed or not, but I did when I got back to my car.  And then she told me that this number/drop is even more amazing because it wasn't achieved because of lots of and/or extreme lows.

And then I had to go back out for labs.  I was standing there waiting with all these other people and they were all looking kinda blah, and I couldn't help but smile!  I got my blood taken, scheduled my next appointment, and sat down to text my mom.  And then of course share it with all of you. I'm still riding on this high, and I couldn't be more proud of myself if I tried right now.  

More than a Meetup

You might think I'm crazy.  But I got off the plane, and got my luggage and got into my rental car.  And I got on the highway and my GPS told me that I was going to be on one highway for 9 miles.  So I called Mer to tell her I was on my way.  And it was the first time I ever talked to her on the phone!  I mean, I just got off a nearly 1,000 mile flight, and I'm talking to her on the phone.  Let me also say that I don't do well talking to people for the first time on the phone, and I don't do well meeting people for the first time.  It's the shy thing kicking in and taking control.  And that day, I NEVER had a problem.  And then two hours later, I was there.  In Kentucky.  With/Meeting my friend.  I called my mom, because ya know, parents get nervous when you jump on a plane to go meet someone you met online.

Chow Wagon eating Greater Taters, and mine must have been made the biggest potato in the world.

Karen, you were right.  It was like I had known Mer forever.  And then we went and did all sorts of touristy things.  Like the Chow Wagon.  And the biggest bat in the world.  And Lynn's Paradise Cafe.  And seeing the Garland of Roses which is made at the grocery store.  This was crazy to me.  I assumed it was made at a fancy florist, but I guess it was fancy since the grocery store had ribbons everywhere.

Louisville Slugger Bat

On Saturday, I did nothing but eat, and eat, and eat.  (Oh, you'd like to know how my diabetes reacted?) Well first, I ate chips and guacamole, chicken burrito, chocolate chip cookies, some sort of strawberry dessert deliciousness, Derby pie, broccoli casserole and more.  And!  I never went over 300.  I call that success.  But even more awesome was that, was the feeling of meeting people who included me as though I had been there time and time before.  Even though some people were disappointed I didn't say Bahston.  And we wore fabulous hats.  And Mer won the prize (are you surprised?).  This is thing that I find most amazing about the Derby.  It isn't just one race.  There are races all day.  And there are even races on the turf.  I had no idea!  I'm not a horse person, never have been and never will.  And yes, I've tried for the sake of my cousins, but no, its not for me.  However, this was awesome.  So the fact that I was there for Derby was kinda crazy.    

Derby party

On Sunday, (Mother's Day - sorry mom!), we went out to brunch with Mer's parents and I experienced southern fried food.  And lots of people watching.  And then we went over to Churchill Downs.  It has always been this place that I see on TV once a year, and then, that's only been within the past few years when there's been a fundraiser at my uncle's bar on Derby Day for a therapeutic riding center.  The hats, the betting, the racing: I had no idea.  Churchill Downs is so impressive though.  It's also incredible to me because I love doing things I never imagined doing.  And flying down to Kentucky is definitely one of those things.   

Thank you Mer for such an amazing weekend!  On Sunday as we were hanging out in her apartment, we were talking about DBlog Week, and we both came up with how awesome it would be, but also how it was going to get in the way of telling everyone about our weekend together.  What I like to call an ultimate DOC meetup. It certainly went by way too fast, and now it feels like I should be able to call you up and say "let's get together!"  Except that's the problem with far away friends, you can't do that.  

"There is magic in long-distance friendships.  They let you relate to other human beings in a way that goes beyond being physically together and is often more profound."

DOC Social Skills

In my 25 years, I've made lots of friends.  All at different times of my life, and probably over different reasons, but in general it has happened the same way.  Meet a person, be friendly, talk to them, enjoy time together and have more and more fun the more you see each other.  Soon one day you're calling this new acquaintance a friend.

But this week: this week changes the way social skills work, how they're developed and how to put them to use.  See, this week, I get to meet one of my friends.  Yes, you read that right.  The DOC is a miraculous place where people understand diabetes and since diabetes affects everything, I've grown close to many of these people.  And I feel like I know many of them.  I've even gotten presents before.

When I met Mer, I thought she was cool and I wanted to talk to her more.  And then we kept talking and talking and talking and eventually twitter couldn't even handle us and we asked if we should exchange phone numbers on the same day.  We share a brain, and this weekend, double diabetic power comes to life, IN REAL LIFE.  My mother asked me if I was nervous.  I mean, I should be, because I'm traveling to stay with a person I've never met, except that the DOC has powers beyond real life.  So I'm not nervous.  I'm excited.  I am nervous about bringing everything I need, and my hat not getting crushed in the suitcase, and not crying going through security.  But actually meeting her, nah, I'm not nervous.

From Life to InDpendence

Maybe you've noticed that my blog looks a little different this week.

When I started writing, it wasn't even here.  It was at ______(if I could remember, I'd share).  And back then I read ONE blog.  And I had a friend telling me that I would be a able to make a big diabetes difference.  I didn't believe her, because my last known A1C was 11.1.  How could IIIIIII make a difference?  And so I bought an at home A1C kit.  And then I felt as though I could do this.  And so the writing began and I joined the DOC and I've never looked back.

I've never enjoyed the title of my blog though (It's About Independence, It's About Life).  I think that independence plays a huge part in my diabetes.  Not only because of my D-Day, but because I'm now actively monitoring and tracking my diabetes.  So I had been thinking about changing the name, and then when I listened to the wego health webinar, they discussed the importantance of the blog name.  If you use your health condition in the title, it can get people there.  Or you can be clever and cute and other fun things.  It jumpstarted the thoughts that were already milling around in my brain.  So I asked Meredith, Kerri, Kim and Sarah their individual thoughts on it.  In keeping with Independence, my idea was Fireworks and Fructose or Independence and Lows.  And then Kerri suggested InDpendence.  And I fell in love.  So here I am.  I still think Life is important, and I always will.  But the name of the blog just feels better to me now.

Thank you Kerri!

Short, Sweet & Powerful

Last weekend some amazing, talented, devoted, inspirational, & awesome people invaded Washington D.C. for JDRF Government Day.  I didn't think that I'd be moved, but I was.  And if you have an hour, check it out, I bet you will be too.

"The bravest sight in all the world is someone fighting against the odds." Franklin Lane

Wordless Wednesday

Thanks :)

Coffee Meetup

Last week I had the pleasure of taking the DOC outside of the screen of my computer.  I got to meet Allison for coffee.  It was just the two of us, but it was a great first DOC meetup for me.  We talked about sensitivity, scar tissue, diabetes & heart problems (and just heart disease in general), what larger DOC meetups are like, and then "real life" things, like apartments & jobs.  It was quick, since it was while Girl Genius was in school.  But it felt great.  To meet someone new, and to meet someone that I already consider I know.  Thank you Allison :)

Scatterbrained Happiness

Yesterday was an "off" day.  I unexpectedly didn't have to work until 11:30 (!), but then Mom Genius was working from home, and I'm starting the looking for a roommate process, which is making my nervous-nelly, shy self a little...well...shy and nervous.  And I got my free Charlie Card from when the bus ate my money.  I had my first roommate interview after work, which went well, and then I needed to come back and pack.  But I got caught up in this awesome new blog, and then I just got caught up in the DOC.  And, okay.  The bus statement does fit in.  I was on the bus into Boston when a whole bunch of drunk boys sat in front of me.  And I try not to pay attention to drunk boys on the bus, but how can I ignore them when they say something as awesome as this?  And I'm talking to my friends, and oh, did I mention I emailed Ellen yesterday to tell her how I used to feel about twitter (crazy & useless) and how I now feel and how she should talk about how there are "regular" people out here who use twitter as positive influence?  Well, if not, I did.  And now I'm scrambling because the DOC took over my life, but I wouldn't have had it any other way.  So thanks for reading my scatter-brained thoughts :)

Year End

How do I write a year end post when I've only been "here" a few short months?  Well, when I read Kerri's meme and I really like the simplicity of it.  And I thought of doing that, except I've only been blogging since September.  So today I'm picking a post from twelve of my favorite blogs (in no order other than the order in which I found you and saved you on my computer.)  To these twelve, thank you.  For everyone else, thank you too.  You're all awesome and I look forward to the years and years to come.

"January"

Those shoes lived in my apartment, and when I got the call saying "That picture I tagged you in?!  It's in that blog I was telling you about.  Now you HAVE to go read it."  Thanks Reb :)

"February"

I don't have a CGM :(, but I think we've all been there when a real-life something automatically & repeatedly reminds us of something diabetes related. 

"March"

You know I'm a sucker for camps, especially ones for children with diabetes, so this is the post that sucked me in. 

"April"

I learn so much here, that it definitely needs to be included, and this post made me do a "whaaaaaat?"

"May"

 I haven't really gotten into many of the D-Mom blogs, because as part of my blog I feel like I am gaining more independence in the diabetes sense from my own mother, but I feel I owe to this specific group of T3s to read at least one, and this is one I chose.  And this post caused tears streaming down my face.

"June"

What can I say, I'm a dog person!

"July"

I used to try and get pen pals through Diabetes Forecast, and this is like the adult, informative version from the ADA.

"August"
I'm getting better at getting the exact amount needed, but I still appreciate a whole post about smearing :)

"September"
These chats can feel like a lifeline to the DOC, and I look forward to the nights I can participate.

"October"
This picture completely grossed me out, but it also hooked me.

"November"
Sometimes we all need a little humor and other emotions to deal with diabetes.

"December"
This is my latest find, and while I'm entirely jealous of this post; putting that aside, I love it.

Maybe next year there can be a recap of my diabetes life, but for this year, here are some of the blogs that have really been helping me.  Enjoy, and happy new year to all :)

Not So Unflappable Me

This year for Christmas, my grandmother wrote all of us inspirational notes to accompany our gifts.  In my mother's note, she called her unflappable.  And it's true.  (And it probably drives my grandmother crazy.)  I, on the other hand, am not so unflappable.  So as we were enjoying our snow day, I was becoming more and more agitated with diabetes.
9:10 AM - 275
11:06 AM - 279
12:23 PM - 80
12:48 PM - 49
2:16 PM - 238
3:14 PM - 81
3:46 PM - 68
4:02 PM - 122
7:26 PM - 345
10: 21 PM - 274
11:19 PM - 133
And after being sick the day before, I yell out in frustration "It's a good thing I'm going tomorrow!"  (to Joslin) And then I finished my lunch, and sat down at my computer to read some blogs before going back out to shovel.  And I sit down and I start reading about Kerri being honest and I'm glued to my screen.  It's certainly not what I want to see (for any person with diabetes), but it's exactly what I need to see.  I remember when I first started reading sixuntilme, and I sent the link to my longest dia-buddy and she said, "Briley, I can't read this.  She thinks 160 is high."   I've been a 8._ A1C-er probably since I started college.  The lowest I ever got was 8.4.  So the 8.2 I got last time was huge for me.  And yet, I'm still sitting here going crazy.  As I'm glued to my computer, my mother is standing at the counter tapping her foot waiting for me to get my snow gear back on.  I talk to her about the blogs I read, but she doesn't quite understand how much they mean to me, and how much they help me, and especially how reading Kerri's has gotten me back on track.  (Kerri, if she only knew how much you help me, then you'd have a bigger fan than any of us in the DOC.)  By the time I finished reading I was furious.  I was mad that this post that is really helpful to me, is now tainted with this frustrated feeling.  I love to comment, but I couldn't.  I didn't want my anger highlighted for all to see.  Instead I've been stewing for a few days.  How we all get there.  How do we get out of it.  How do we get the help we need?  Do we have all the help/support we need?  Is there more I can do for me? for others?  Will I ever get under 8?  How hard will it be?  If I do, can I keep it there?  What about someday, way far off, when it absolutely needs to be lower?  Will I be able to do it?  So far there is no evidence (as an adult) that I can.  Did my unflappable mother ever have these doubts about herself when she was taking care of me?  If she did, I certainly never saw them.  How did she hide them? (Now that I'm an adult, I do know that she had them, but she never let me see.)  How do I go from working really hard and seeing results to working really hard and not seeing results?  And why?  And how do I not let it get the best of me?

"The larger the island of knowledge, the longer the shoreline of wonder."

For all of you who participated in #dsma on Wednesday night, I want to thank you for welcoming me with what felt like open arms, open minds and open hearts.  The replies & RTs made me feel like I've been there before.  I have to admit though, I'm not knowledgeable about insurance and insurance company policies, or how it can affect me.  I just got my own insurance, but have not had to pay for my own prescriptions since I still have insulin and strips from the last time on my parent's insurance.  And the only thing I knew about clinical trials is that Rebel got denied for one this summer because her pancreas still makes C-peptide (or something).  

As I was thinking over the entirety of the conversation yesterday, I remember sitting in class my freshmen year of college, and the professor talking about three different types of information.  There are things you know.  There are things you know you don't know.  And then there are things you don't know you don't know.  (Yes, it took me a long time to understand that last one.)  But one day it clicked.  And on Wednesday it clicked too.  First and foremost, I had no idea it would be so hard to read and respond simultaneously.  There's just so much awesome stuff being said!  But I got to read about others' experiences and I got to ask questions.  It was so helpful, especially to just read at times.  I wanted to research what was happening in front of me, but it was all happening so fast, and all of a sudden it was 10:00 and we were done.  

And then last night I listened in on the blogtalkradio show, and that left me feeling even more astounded.  There are so many smart, articulate people out there, and I'm glad that I have found you, but now where do I go?  My brain was trying to process what it was hearing and reading, but there was no output in return.  I asked questions, but I had nothing to give.  It feels good.  I know that there is more out there I need to learn about, and now I've got a reason to get started on it.  These conversations have lit the fire under me.

December 10: Let It Snow