Spare A Rose

Life for a Child

Monday, July 28, 2014

Things I’ve been reminded of as of late - The 2014 Summer Edition

Lately I've been reminded of somethings & I thought I'd share. 
Also: I'm a weird. 
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Some things I've been reminded of as of late~

The DOC always has my back - Same goes for my Endo & CDE

I am one lucky duck, indeed. 

Typing while wearing wrist braces makes for some interesting key strokes.
Thank God for the Edit, “Undo Typing,” option. 

In order to makes changes, you have to be the change - Not always easy, but necessary.

Sometimes you can bolus for pizza and actually be low 2 hours later. 
Sometimes you can bolus for a salad and be high a 2 hours later. 
File both under: WEIRD & INCREDIBLY ANNOYING

I’ve recently jumped on the True Blood bandwagon, thanks to 3 months of free HBO and the magic of On-Demand.
TB is a great show, but every single time I watch an episode, I find myself thinking that PWD blood would probably be just as coveted by the Vamps as Fairy blood - Especially if said PWD was running moderate to high blood sugars after a cortisone shot
Now depending on the Vamp, this can actually be kind of a great thing.... Or it could TOTALLY SUCK. ;)
Come on now, I can't be the only one who wonders about this..... or can I?   
Also: File Under: Diabetes Brain

Summer fruit and veggies are incredibly delicious, but when it comes to tomatoes I need to pace myself because too much of a good thing equals acid mouth. 

Forcing yourself to test your blood sugar on the hand you normally never test with isn’t as hard or as cumbersome as you think it might be.


But enough about me - What have you been reminded of as of late?
And it doesn't have to be about diabetes, either. 

Thursday, July 24, 2014

Because Sometimes Diabetes Is Hard & You Have To Let It All Out.

Yesterday sucked - And then it didn't. Here's what happened & I hope you can relate!
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“You know you’re A1c is 8.2,” said the attending Fellow (who looked like she was 15 and was extremely polite,) as she went through the standard questions so should could prep Dr. J.
Me: No, I didn’t. I expected it to be in the mid seven’s, but not 8.2.
And my heart sank into my the pit of my stomach and I kept looking down at the floor. 
I explained about my recent cortisone shot for tendonitis and my crazy insulin requirements this past week - And how that ironically, my numbers had been more study with the cortisone than pre cortisone. 
I knew the attending was trying her best, but I just wanted to talk with Dr. J.
She left the room to confer with the Dr. and I posted the following on Facebook and tried to stay calm.

Endo apt running an hour behind schedule because of course. And I don't even what to talk about my a1c.
#diabetesburnout #ImnotgonnacryImnotgonnacryImnotgonnacry

I took some deep breathes,  tried to stay calm and centered and stared at the florescent lights overhead. 
FTR: I hate florescent lights. 

There was a light knock at the door and in walk Dr. J, followed by the Attending Fellow.
He extended his hand and when I reached out to take it, he clasped both of his hands in mine and said: 
Kelly, how are you doing? What’s going on? We need to get to the route of your a1c. The rest of your labs were great and we are going to discuss them, but you’ve gone up almost a point and we need to know why. 
I’ve tracked down Cheryl (his CDE) and she’s going to come in and yell at you.

And then my face fell and immediately he smiled and said: No, she’s not going to yell at you, nobody is going to yell at you - I’m joking. It’s OK, Kelly. Were going to track your trends together and everything’s going to be OK. 

At that would be when Cheryl came in and we hugged. Then,in tandem Dr. J & Cheryl asked me what was going on in my head. 

Me: I don't know...... I'm tired. I’m just really tired. I’m tired of tendonitis and of always having to work at “this.” 
I’m just tired. I’m OK, I’m just feeling a little burned out.
Almost 37 years and sometimes it gets to me. I’m just...tired. 
My voice started to crack as I was talking and I could feel my face starting to get red. 

But saying it out loud felt good.

Cheryl looked me in the eye, patted my arm and said: Of course you are. 
I sent you the email a few weeks about our Pump Support Dinner next week. 
Kelly, I want to buy you dinner, I want you to come. I know it’s a hike but I’d love to have you there.
ME: O..K. 
And I looked at Dr. J and Cheryl, who were looking back at me with love, concern, understanding and compassion.....and I felt like a total shithead. 
I felt like I’d disappointed them  - and my community - and myself. I was so mad at myself.
Dr. J: When the cortisone’s out of your system, probably next week, we can start tracking your trends and we can tweak what needs to be adjusted. 
The rest of your labs are beautiful. Kidneys are fine, cholesterol is beautiful, Vitamin D is 35 up from 14 last time. That’s awesome!

Me: What about my thyroid? 

 Dr. J. Totally normal. Your thyroid numbers even better than last time! We just need to work on your A1c. It would be much easier if you had a CGM. 

Me: Yeah, I know. 
Dr. J: We will figure this out. Now, can I get you some insulin samples? 
Me: YES. 
And that’s what he did. He went out of the room and came back with a bag of insulin for me. 
After that, we  all said our goodbyes, I scheduled my next appointment for October, got my parking ticking validated and I hightailed it out of there as fast as I could. 
I could feel my eyes starting to fill up in the elevator but I kept it together until I got to my car. 
By the time I drove out of the parking garage tears were streaming down my face and I was full on Oprah “the ugly cry,” mode.
And in my head I was like: How could I have let this happen? For God sakes I’m a Diabetes Advocate and a Diabetes Blogger - I’m all about empowering people and I let my A1C get up to 8.2  -WTF!!
I wracked my brain trying to remember the last time my a1c was 8 or above  - and I couldn't remember... maybe 18 years ago? 
I approached the Walt Whitman Bridge and it was a parking lot. 
As I sat stuck there, stuck on the middle of the bridge in rush hour traffic that wouldn’t budge, I thought about everything. 
I thought about my parents and my sister and how a woman in the waiting room today reminded me of her. 
Not because she looked like her, because she didn’t, But she really reminded me of Debbie because she was young, in a wheel chair and her skin looked gray... and I knew why she was there. 
She was there for dialysis and it broke my heart - And it scared the shit out of me. 
And I shed tears for that woman - A lot of them.
I thought about how I was part of a community and damn grateful for everyone in the DOC and how I knew for a fact that I wasn’t alone - But I still felt alone sometimes. 
I thought about perfection and how impossible it is to achieve and maintain in life....and life with diabetes. 
Because diabetes, much like life always changes the rules just when you think you’ve nailed it. 
And that you can do everything right and still get a high or low blood sugar. 
I thought about curve balls and how we are always trying to catch, dodge and or be prepared for them with diabetes - And sometimes all that catching, dodging and being prepared is fucking exhausting. 
And how I’d much rather dodge the ball and the wrenches then deal with diabetes curveballs. 
Sidebar: See what I did there? 

And then “Fix You,” by Cold Play came on the radio and as I listened to the lyrics, I lost it even more.

When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you
And my crying continued there in the parking lot known as The Walt Whitman Bridge at rush hour. 
Except it was no longer the “I feel sorry for me,” kind of cry that it had started out as. 
No, it was more a healing kind of cry that was much needed. 

And then I said out loud:

I'm not broken. 
My pancreas is, I’m not. 
I may need a diabetes tune up and I may be tired, but I’m not down for the count because of diabetes - or life. 
I refuse to be stuck in reverse - I'm moving forward - Fuck the curveballs - and the wrenches. 

And that would be when the cars in-front of me started to slowly move and inch their way towards the Jersey side. 

The good tears flowed almost the whole ride home - Until the rush hour tunes went all “old school” and Doug E. Fresh, Slick Rick & The Get Fresh Crew’s  live version of 'The Show," came on the radio. And that would be the exact moment I started singing at the top of my lungs:
Well tonight, on this very mic you're about to hear
{We swear, the best damn rappers of the year
So, cheerio, scream bravo}
Also, if you didn't know this is called The Show!

I sang along to the whole song and every song after that. 
And when I finally made it home I was greeted to amazing support via, texts, twitter & Facebook from my tribe. And I felt so much better. 

Diabetes is hard -  Even when you’ve been doing it for over 30 years. 
Change is hard - even when it’s for the better. 
Crying is OK - Actually, it's more than OK.

Having a community to support you both online and off and a diabetes pit-crew who understands and wants to help.....That’s efffing priceless. 

Wednesday, July 23, 2014

Almost Wordless Wednesday: #eatlocal & #farmfresh

For the first time in over ten years, I haven't planted my yearly summer veggie garden and I miss it. Lucky for me, I have weekly Farmer's Market that gives me my fresh fruit and veggie fix! 
Also, it's easy, delicious and on the cheap! 
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I made that! 
I've been making a version of this same salad every single night since last Thursday -Thanks to my local Farmer's Market!
Salad created with organic Jersey tomatoes,onions, basil,(I almost typed basal)
locally made sea salt mozzarella cheese, topped with an EVOO, cracked pepper, sea salt & lemon dressing.
Every Thursday morning there's a Farmer's Market in my town. 
Fresh organic local fruit and produce are sold from area farms and local
vendors sell deliciousness in the form ofartisanal cheeses; honey, baked goods, BBQ  - All types of amazing stuff!
I'm trying to stay on a budget and I spend between $14 - $25 dollars a week there. 
In return I'm able to eat healthy and delicious all week while supporting my local economy in the process.
I find that I know longer waste as much food and I've tripled my daily fruit and veggie intake. That makes me feel good and my meals are less carby.... for the most part~
And it's so easy to do!   
So if you live near a Farmer's Market or stand or happen to drive by one, 
do yourself a favor and stop in, #eatlocal and #farmfresh by embracing summer fruits and veggies while you can! 

Tuesday, July 22, 2014

Me, Captain Cute & A Captain America Bandage!

Kids are cool and I wouldn't mind if my infusion sets were all super-hero themed!
FTR: I would love a Wonder Woman one!!

Speaking of cool, today's #dblogcheck day - If you could leave a comment saying "CHECK" by every diabetes blog post you read today, that would be awesome! 
You can read more about #dblogcheck day over at  A Consequence of Hypoglycemia!
Also, if you're not currently listed on my blogroll, leave your blog URL in your comment and I will add you ASAP!!
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I'd just arrived at the BBQ when my friend’s four and a half year old son ( and who for the rest of this post shall be called Captain Cute,) came running up to me to show me the band-aid on his knee.
Captain Cute: Look at my band-Aid, Kel.... LOOOOOK!!!!
Me: Captain America - THAT'S SO COOL. What you do to get a cool band-aid like that? 
Captain Cute: I fell on the sidewalk chasing my brother and my knee got blooded up.  We're waiting for it to scab up now.
Me: Blooded up....that must of hurt, yeah?
Captain Cute: Yeah.. but not so much now.
Me: OK, good.

Then Captain Cute pointed to my leg and said: Hey Kel, what did you do to your leg? 
I’d forgotten that my pump's infusion site was on my side thigh and was darn near eye to eye with Captain Cute. 

ME: Nothing - That’s my infusion site for my insulin pump. 
Remember we talked about how my insulin pump gives me medicine because my belly is broken  - The medicine turns the food in my belly into energy.
Captain Cute: But it’s in your leg!! Food goes to your belly, not your leg, Kel!
Me: The medicine in  my pump turns food into energy and it can go in my body from my legs, arms and backside too, not just my belly. 
Captain Cute: IN YOUR BUTT? THAT’S SO FUNNY!  MEDICINE IN YOUR BUTT FOR YOUR BELLY! CRAZY!!
I smiled and said: Yep, TOTALLY CRAZY.
Captain Cute: How come you don’t have a cool band-aid for it? 
Me: Good question. Sorry, but this is the only kind I have. 
Captain Cute: I could get you one of my cool band-aids - I have a lot of them
Me: Oh, I know you do. Thanks Captain Cute, but I’m cool for now.
Captain Cute. OK. Hey, guess what? Dad said we’re gonna get a Slip-N-Slide. Do you know what a Slip- N-Slide is? Have you ever been on a Slip-N-Slide? Do you like them? 
My mom doesn’t.

And the conversation about all things Slip-N-Slide as we walked towards the tables of food set up in the back yard..... and a wonderful time was had by all.

Wednesday, July 16, 2014

Am I The Only One Who's OCD RE: Lab Work & My Fasting Blood Sugar?

I'm supposed to get my blood work done tomorrow for my Endo appointment next week. 

Here's the thing: My blood sugars have been in the crapper since the middle of last week, I have a nasty summer cold and sore throat and I'm currently on a temporary basal rate that fluctuates anywhere between 119% and 125% over the last 5 days. 
And FTR: I feel like crap. besides the cold and sore throat, I have a blood sugar headache and my neck hurts. 
I know it shouldn't matter if my labs show a high and or elevated fasting blood sugar -especially since I'm fighting off a cold and a sore throat.   
I know my lab work isn't about the fasting blood sugar, it's about what's going on in my body since my last Endo appointment, not the #blood sugar I had when I had my blood drawn. 
And my Endo, the Rocking Dr. J never chastises me for a high and or higher than normal fasting blood sugar - He gets that every blood sugar number has a story and wants to hear that story - with no judgement. 

But for some stupid and deep seeded reason a high fasting blood sugar matters to me - And it always has. It's like I'm #dstigma - tizing myself. 
Of course, there's a  50/50 chance that A1c has gone in the wrong direction and hyper focusing on my fasting blood sugar this time around is some sort of avoidance issue. 

My question: Am I the only one who feels the need to have an acceptable fasting blood sugar when it comes to lab work or am I just completely OCD? 

Monday, July 14, 2014

Stop The #Dstigma & Run With The Diabetes Advocacy

There’s been a lot of talk about the stigma associated with diabetes as of late, a.k.a. #dstigma. On June 15th there was a PFDC, Johnson & Johnson twitter chat moderated by #DSMA discussing DStigma at this year's ADA that addressed the subject head on. 
Diatribe put together a great Storyify re: the #dstigma panel discussion they participated/presented on last week at FFL & why we need to discuss it.
I was helping in another FFL session so I missed this & I'm so grateful that Diatribe storified the session!
And #dstigma was brought up multiple times in regards to #DiabetesAdvocacy last week during Diabetes Hands Foundation's #MasterLab at #CWDFFL14.
Speaking of #Masterlab - Diatribe breaks down the #Masterlab via Storify, HERE.  
And Kim has a great #Masterlab debrief today over at Textingmypancreas.com and so does Sue over @ Diabetes Ramblings ~
And the following is my 2 cents on the subject~
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I Googled the word “stigma, and this was the first thing that came up: 
Sound familiar?
Add a “d” or the word diabetes in front of the word 'stigma' to the definitions above & you’ve got #Dstigma. 

Look, none of us should feel shame because we have diabetes - but we do. 

All of us living with diabetes and regardless of the type, shouldn't feel disgraced because we bear the scarlet letter, D. But we do. 

None of us should feel that we’ve dishonored ourselves or our families - but we do. 

No PWD should feel Ignominy & opprobrium (OK, I’ll admit that I had to look both of those words up), but we do. Ignominy means public shame or disgrace & opprobrium means  harsh criticism or centure. Sound familiar? It should because I know that we’ve all felt shame, discraced or centured  - A.K.A.: Why are you checking your blood sugar in public?!” 
All you need to do take a look at how diabetes is presented in the media 90% of the time and you’ll feel shame and disgrace - Not to mention anger. 

And none of us should feel like we've we’ve failed because our pancreases and metabolisms have - But we absolutely do.
 And none of us should feel humiliated by our diabetes and what our diabetes requires us to do - but there are moments when we've all felt that.

How many times have we said “I’m sorry” to the people we love because our diabetes is behaving badly - even when we do everything right? 
And how crappy does always feeling like we have to apologize for our diabetes feel? 


The diabetes guilt and the #Dstigma it causes is an anchor around all of our necks, one that many of us have become so accustomed to wearing that we actually forget it’s there - But it drags us down none the less.  
And even if you’re not familiar with mythology, each of us can relate to Atlas, the man who carried the weight of the world on his shoulders for eternity, because we continually carry the weight of diabetes on our shoulders for what seems like an eternity. 
We perpetually find ourselves playing the role of  defense with diabetes and #dstigma - And it wears us down and beats us up on a daily basis - If we let it. 
There’s dstigma within our own community - the us verses them when it comes to type 1 verses type 2 and acknowledging that LADA 1.5’s exist. 

Here’s the thing: Every single person living with diabetes  or loving and or caring for a person with diabetes is part of the same Diabetes Family Tree, no matter the type. 
Regardless of the type, we are all part of the same D Tree - Just difference branches. 
And if we’re going advocate for diabetes and elevate #dstigma  successfully, then we must stop with the #dstigma within our own community. 

We need to unify and act as one community. 

We must work together and use our powers collectively as Diabetes Advocates to create real change on all levels re: the public, private and governments perceptions of diabetes and what living with diabetes entails.  
WE ARE IN THIS TOGETHER.
Lastly, if you want to stop #dstigma, educate others and advocate for real change,  
then embrace the KISS of Diabetes Advocacy , a'la Christel!
ALSO: #RockOn

Thursday, July 10, 2014

Free Write: Friends For Life 2014

So much happened during this year's Children with Diabetes Friends For Life 2014 Conference, aka FFL, that I could write a book - Seriously, 6 days and damn near 24X7 of learning, laughter, self realization and understanding about life and life with diabetes  - And  for the past couple days I've been plagued with the question: Where the hell do I start? 
Starting at the very beginning is of course a very fine place to start - But then the post would have gone off in a Maria Von Trapp twist& that's not the direction I was aiming for - And Lord knows how much I LOVE, LOVE, LOVE me some  "Sound Of Music!" 
Instead I, decided to start by setting my kitchen timer. I set if for 20 minute and did a FFL free write - And here’s what I came up with. 
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Ironicial: It’ s funny how life works. Every single time I attend FFL I come home with no voice and spend the next week sounding like a frog - Which is indeed ironical because every single time I attend a Children with Diabetes Friends For Life  - I find my voice I'm inspired by thousands of others. 
There’s so much that hits me like a ton of bricks before, during and after I attend FFL that it’s hard to articulate - literally and figuratively  and that there’s a magic that is given from the wearing of the green and orange bracelets that is indescribable unless you're actually wearing one. It’s a feeling of home, of being and continually becoming - Feelings I love, need and require. 
Feelings and emotions of being better understood and being able to better understand what life and life with diabetes is and how to deal with it. And not just in my life because it’s not just about me, but in every single person who deals with diabetes. 
I was reminded how diabetes affects me even when I’m not thinking about it - And that others feel the same way.
That I’m not crazy or alone for feeling overwhelmed with my diabetes life sometimes  - That  it’s OK. 
That I'm strong even when I falter- So are you. And the people we love are strong, even when they falter -- And no one is perfect.

FFL is amazing, exhausting and exhilarating all rolled into one and for the third year in a row I’ve come home sans my physical voice while having reignited my diabetes voice.
Some sessions had me crying from the realizations of my life... and my life with diabetes.  And some things were shared in those sessions that I’ve never shared with anyone.
What bubbled up to the surface was freeing and it shed light on some stuff, but it rocked me. 
But I could share freely because I was in a place of trust, love, safe and understanding was huge. So to those of you in the room - Thank you and I love you  - let's ALL get back on that elevator! ;) 

The Master Lab: An advocacy boot camp that left me feeling that I must do more in reinforced the fact that regardless of the diabetes type, we are all part of the same diabetes family tree - just different branches. 
A single branch breaks more easily and is helpless in a storm, but surrounded by other branches it bends and  is able to change and move with the flow and regardless of the elements - Damn right I’m for that! 

There were many moments during FFL that had me laughing until I was literally crying and just thinking of those moments brings a smile to my face and brings me to better whenever I think of them. 

Moments where I was mothered and I can’t even begin to pontificate on how much I need and miss that - And how appreciative I am for all my Dmamas and D friends who are and for those who aren’t mothers (and who are chock full of maternal) and who mothered me none the less - more on that later. 
And as a woman sans children FFL always gives me the opportunity to mother and mentor and that makes my heart so damn happy. 

Beautiful moments of FINALLY meeting people I consider friends but have never met in real life - EFFING AMAZING. 

Moments where I met new friends and was like: How come we are just meeting now?? 

There’s something incredible and damn special about spending 6 days with people, be it in sessions, at the Starbucks, at dinner, the pool or in the lobby that spoke the language of diabetes in all dialects but with not need for translation. 
It was and will always be a homecoming - A place to hang my hat, to love and be loved and place to continue becoming - And I am grateful - And stronger because of the people that make up FFL. 
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And then the timer went BUZZZZZZ and I had to stop writing.
More FFL posts to follow :)