Am I hearing things???

We live in a house that is over 130 years old. It's pretty cute, I must say. We have it painted in a Painted Lady style (with the crazy colors) it's got the wrap around porch, metal roof, old fuses, old plumbing, hardwood floors, wood siding, LOTS of work. Joe and I sleep on the first floor and all the kids are on the upper floor. I use a baby monitor, which we have named the Pump Monitor, after all, Nora is almost 12, to hear her pump alarming (and for Jackson too...he's four).

I know Medtronic has this nifty thing called the MySentry, which is a monitor with a screen of what your child's pump screen is. And man, oh man, if this family could afford it I would get it yesterday. But we just can't (even with the special they are running!) ANYWAY!!

 We upgraded the Pump Monitor to a digital one. It's nice and quite. I had an older one that was really loud and static-ky, but it worked. This digital one is almost too quite. There are nights I lie in bed and mentally will one of the kids to make some kind of noise in their sleep so that I know the monitor is working properly. Then there are nights I swear I hear her pump alarming and it's not. You know, when it's so quite that it's almost deafening? Does that make sense? I think my mind/ears like to play tricks on me. And why I let my mind get the best of me, I'll never know. Because when her pump alarm goes off...it goes off. No doubt about it. However, last night I kept thinking I heard this muffled noise and it was nothing...not the pump anyway. It's just maddening. Not to mention the fact I need to turn our monitor off downstairs when the kids are gone...what if I hear a noise up there? What if someone just whispers my name? Right. by. the. monitor.!!! EEK!! As if D doesn't cause enough stress...now this monitor is wreaking havoc with my mental state (and for those that know me, it doesn't take much!...Did you just read the whole whisper my name sentence!?)

I just wanted to share this with you. Just in case, you too, are hearing things...know your not alone. And if you aren't, then great!! ...maybe it's just me?!?!

Our fancy Pump Monitor!!

First Annual "Tour de Cure: Mystery MTB Ride"

VERY BIG News from Type1Rider.org:

October 13 the North Carolina office of the American Diabetes Association will be hosting a NEW, FUN, and groundbreaking event for the organization in Chapel Hill, NC. 

For the first time ever, the ADA will be hosting the first annual "Tour de Cure: Mystery MTB Ride"!!

In keeping with the season costumes ARE DEFINITELY encouraged!

Ride for as many laps as you like (or can) within the Chapel Hill North Forest trails between 12:00pm and 3:17pm. We'll ride those extra 17 minutes in honor of those who are diagnosed every 17 seconds in the US with diabetes.

We'll have FUN events and trails for the whole family and a party going on until 5pm.     

Diane and I will be riding and we invite ALL to come out for an afternoon of fun and comradery with a ton of other like minded folks working towards a cure for Diabetes.

Register by clicking on the logo:

Keep Choppin!!!

Watch out Mr. "Big, Bad" Insurance...this D Momma coming straight at ya!

We are in the process of trying to get Evelyn on insulin pump therapy. She knew before she was "officially" diagnosed that she would be getting a pink pump and a special pink skin to go with it. She had it all planned out! Unlike some kids you plan out what they will wear the next day or what they will major in for school my kid plans out her demise...if you will! Well, health insurance could possible be an issue for us. We haven't reached the mandatory six month waiting period but our pump company insurance liaison feels we have a shot since Nora is on a pump and has been since 2007. In order to get all our ducks in a row; we have letters from Evelyn's Endo, paperwork and more paperwork signed by the powers that be. In comes D Momma. The personal letter to the insurance company pleading our case. Why Evelyn wants to be on a pump. That we know what we are doing. I'm sure many of you have gone down this insurance road of hell! I just wrote the letter and wanted to share it with you! Fingers crossed, Blue Heels on, and a powerful letter will hopefully work. If not. It's okay...we wait till December 1st. But this D Momma likes a challenge. So look out Insurance Board of Approval...you have no idea what your up against!! 

9/23/12

To Whom It May Concern:

I am writing to you on behalf of my daughter, Evelyn Loving. Unfortunately, she was diagnosed with Type 1 Diabetes, June 1, 2012. Just a week after she graduated High School and only 5 days before she celebrated her 18^th birthday. Not only is this unfortunate for her but it has devastated our family. You see, our 11 year old daughter, Eleanore, was diagnosed with Type 1 Diabetes, June 13, 2005. She was 4 ½ years old. We KNOW diabetes. We LIVE diabetes. Every day. 24/7/365 x 7 years and counting.

The reason for my letter is for you to consider waiving the six month waiting period and allow my daughter, Evelyn, to be placed on insulin pump therapy. Her sister has been successfully pumping since 2007. She loves her pump and the convenience it allows her to live her life without the hassle of insulin syringe injections. Evelyn has seen the workings of the pump and how it has given her sister freedom. Freedom to be “normal”…to be discrete about her chronic condition.

Evelyn has been given herself 575 insulin injections JUST since June 1. That’s 575 different rotations of injections sites. Upper arms, inner/outer thighs, and belly. It doesn’t get any easier for her. She is a trooper but as a parent it rips my heart out with every injection she must endure. For every shot that hurts her; while it’s administering the life saving drug she needs, it’s hard to see her go through this. Having an insulin pump won’t cut down on the amount of insulin she will need. However, it will cut down on the amount of syringe piercings she will have to endure. To have a single pump site set that rotates with a new site set every 2 -3 days will save her skin from multiple injections, scars, and possible scar tissue. Not to mention the constant flow of insulin she will be receiving via her pump that will help her manage her diabetes more effectively. To get this constant flow of insulin gets rid of the peaks and valleys she sees when she takes her long lasting insulin. It’s just a better regime for her.

So please reflect on our specific case. We know insulin pumps. We are well educated on how a Minimed Revel Insulin Pump works. We know to call Minimed and/or Cincinnati Children’s Medical Hospital Center for any problems that we may encounter with the pump and/or insulin adjustments.  We can do this. More importantly, Evelyn, can do this. To be able to give my 18 year old daughter the freedom to be a young adult without the worry of embarrassment when she pulls out her insulin syringe during her classes to correct for a high blood sugar or snack; when mean the world to her; to us.

Thank you for your time,

Jennifer Loving

Mom to Two Type 1 Diabetics 

Research study, dying, finding...feelings

When Nora was diagnosed seven years ago I enrolled her in a diabetes research study. I figure any kind of research Dr's can do to either make my kids life better, more manageable, or cure diabetes, I'm all for. Now, Evy will join Nora. This particular study is helping the professionals learn more about how diabetes affects children, adolescents and young adults. She had to fill out a questionnaire about food, eating problems, low blood sugar, quality of life and family conflict. So this study is looking at various angles of diabetes.

This got me thinking...

As a Mom, to two T1D's, I'm so involved with the every minute details of D. The number flashing from the meter...what to do with that number...treat with insulin...treat with carbs. That I often don't think about all the other stuff! I mean, yes, I hear them complaining that they don't want to take their blood sugar, that they are tired of D, that their injections hurt, etc.but I get into a suck it up mode and kinda brush it off.

I shouldn't.

I need to let them feel pissed, happy, sad, mad, content...and whatever else D makes them feel. I KNOW it sucks but then I don't. I know it sucks for me...having to set my alarm every day at 3am and checking on them. I know I'm sleep deprived for all the checking, the staying up to make sure blood sugars go up...you all know what I'm talking about! But I don't KNOW how they feel.

I guess it really hit me yesterday. Nora, especially, is getting tired of the same ole D crap. She's angry. You look at her the wrong way and it's ALL over!! But she's almost 12. Hormones are FLYING...flying, I tell you!! It's walking on egg shells one minute and cracking up laughing the next. One just never knows! But she was filling out her part of the survey and in one of them she is to rate her feelings based on questions asked. Based on her answers...she worries about D...more specifically...she worries about dying!! My little girl. My 12 year old worries about DYING!! At 12, I was listening to Duran Duran, wearing my Treetorns, and guess jeans wondering what I was going to do on a Friday night BEFORE Miami Vice came on. I never thought about dying!!! Heavy...

She also thinks about D all the time...that it controls her life. That she will have problems in sports, exercise or playing because of D. She HATES to stop during her game/practice to test and treat. She just wants to be like one of the other girls.

On the flip side she answered that she has no problems talking with Dr's or Nurses about her D. That she has no problems with her family's involvement with her D care. That she doesn't have problems making friends or keeping friends because of D and that she isn't embarrassed about having D. These are the things that I love to hear. She is comfortable enough in her own skin to take her D and have people accept her for who she is. She ISN'T diabetes...she HAS diabetes. Plus, she is comfortable talking to her Dr's and Nurses about her care. I know grown adults who can't even do this!

I feel a little proud of her that she is strong enough but at the bottom of my gut I'm a little sad. Sad knowing she is worried about dying. Sad knowing that I can't change that. I can't fix it.

It is the truth.

It is reality.

I have some things I need to work on...(obviously!! and Evy, I know your reading this and rolling your eyes!!) I need to work on acknowledging  FEELINGS. It's so easy to sweep them under the rug and deal with them later if at all. But this is important. Don't just treat the disease...the numbers. Treat ALL of it. The eyes, feet, internal stuff...the mental part of D. It's the complete package.

Every. Single. Bit. Of. It.

Do you have things YOU need to work on? Better numbers, making yearly eye visits, keeping up with Dr appts., going to your Dr. appts, checking your feet, talking to someone if your down/mad, acknowledging you feelings?

Think about it...I know I am!!

S.uper I.nsulin S.isters!

 Walk Team 2012: Super Insulin Sisters!!

Back in April or May I registered our family walk team: Loving Nora, in our local JDRF Walk to Cure Diabetes walk event. Little did I know then that we would be adding a new diabetic to our team, Evelyn. So instead of changing our team name right then, we waited to do our big reveal the day of the walk. In our sleep deprived state (we get rather slap happy) and S.I.S. (S.uper I.nsulin S.isters) was born. Our logo and capes for the T1D Hero's were designed. It was fun and a name both the girls liked. So it was a win-win! 

I know, for me, this was a rough day. It's always been Nora's day and now it's Nora AND Evy's day. And yes, I could be upset about the fact I'm walking for BOTH my girls. But, I was concerned with making sure both girls felt that the day was for the two of them (along with all the other T1D's). You throw in emotions, hormones and lows and it's a lethal cocktail. Nora loves her sister but she HATES D. She's mad that Evy has D. She knows what this diagnosis means and it translates to Nora being mad at Evy. I try to ask Nora her opinion on D related things that Evy may ask me. But it turns into a "all you ever talk about is D" and her leaving the room. I get that she needs to process it all. That she has to share her disease. It makes D a little less special when two kids have it in the family. 

I can't win. 

I can't make every one happy. Fundamentally I know this. It doesn't change the fact that I want my kids happy. Nor will it stop me from trying.

Don't get me wrong...we had a spectacular day! We had a big support system walking with us there and on-line. We raised lots of money and in some neat ways. The weather was absolutely beautiful. But part of me just couldn't "enjoy" it for what the day brings forth...hope! I'm too worried that my girls aren't feeling special. That they aren't enjoying the D day for all its worth. Because, Lord knows, there are enough crappy D days that anything we can do to make D better, like a walk, we want to live up. 

At least our first walk as S.I.S. is under our belt. I'll just hope and pray that this time next year we are a little more gel-ed as a walk team and...

That the girls can embrace D together. 

The good and the bad. 

The highs and the lows. 

The D life. Together. As Sister's. 

T1D Hero signs displayed along the bridge connecting Cincy and Newport.

Over the weekend Diane and I where fortunate enough to finally be able to meet Michelle Litchman face to face in the Brookline neighborhood of Boston, MA.  Michelle, and other D movers and shakers, where in town for a diabetes conference and was gracious enough to spent some of her free time with us.

Most of you already know Michelle from her work as the author of the Sweet Advice blog, and as a very active and outstpoken member of the DOC.

Michelle is currently a PhD candidate at the University of Utah, and, as part of her work there, is conducting a very important survey about diabetes.

I wanted to share the survey in hopes that others would be interested in taking part, and helping Michelle to learn more specifics about the disease we battle each and everyday.

Follow this link to take the survey:

http://www.tudiabetes.org/m/discussion?id=583967%3ATopic%3A2784644
or contact Michelle directly with questions:

michelle.litchman@gmail.com

Have a great day everyone!!!

Wordless Wednesday - Understanding a deeper part of Awareness

Remembering 9/11 - Home of the Free, because of the BRAVE...

Whispering a prayer today for all who lost their lives in this tragic event, and for the incredibly brave women and men who gave everything trying to help. 

Thanks to BHS Co-Founder Tony Cervati & Type1Rider.org for allowing us to share this with you today

5 Stages of...Good[?] Grief Charlie Brown! - Part 1

PART 1

Here goes, and it is a bit overdue, as well as a work in progress most of us can relate to in some way or another. It is called life...better yet, it is called ‘sometimes, life is stranger than fiction, and/or get’s in the way of...well, life’.

"Mourning occurs in response to an individual’s own terminal illness or to the death of a valued being, human or animal. There are five stages of normal grief. They were first proposed by Elsabeth Kubler-Ross in her 1969 book “On Death and Dying.” No one in my immediate Family has died recently, however, there has been new Grief.

My favorite Diabetic (my Wife) worked in the ER of a very busy Hospital, and busy in a bad way, a long time back when we were still dating. During her shift, she was the one checking in all new patients, and this was before any Trauma intervention prior to seeing a doctor as most ER’s do today. She had the unfortunate experience of seeing, and being in the midst of some very horrible incidents, and she was so concerned on doing her job best she could, to try and ensure patients (and Family) got the best care forward. 

But when it came to our children and/or Family members, she had to run as fast as possible at any sign of injury or pain. Just couldn’t hang. I have found I am the same way...

Although I may be an Advocate for all of us affected by diabetes, I am first and foremost a Caregiver. Doing both at the same time can produce some issues for me that are not always pleasant. When that happens, I go into a different mode especially when it involves my Wife of 30+ years, the last 19 or so as a diabetic, as it relates to pain and/or suffering of any kind. 

We were hit with some newly diagnosed issues, the one’s that are called co-morbidities, related to diabetes. It hit me *hard*, like never before *hard*, like I never hoped or wanted it to be kinda *hard*. I then withdrew...BIG TIME!

I reminded myself this is not the first time we have had peripheral issues related to diabetes enter our life. I also finally [again] realized I could not just walk away from my Advocacy work, because that was an option I cannot take, I just don’t really have it in me to quit. 

Am I, or was I grieving? Yes. Did hearing the words "I'll wait for you in Heaven babe" from my favorite Diabetic remind me of the reality...yes!

So, I not only gave myself a refresher course on the ‘5 Stages of Grief’, I realized at that time that I had to flip each Stage around, and make it better in the context of me. I am calling this the “5 Stages of [Good] Grief”. 

I am blessed beyond words in so many different aspects of my life. One of those blessings is to be surrounded by some of the fiercest D warriors I have ever known, and because of my fellow BHS Team members Diane, Jen, and Tony, I have had the opportunity of being able to take care of me & mine first, before any 'work' as some call it, without me feeling guilty of not being ready for duty every day.
The 5 Stages do not always happen, do not happen in any order, and are different for everyone. The first Stage I will write about & how I am trying to make it better is "Denial and Isolation", which I will talk about in Part 2, as well about the *why* I think I am/was grieving as it relates to the new diagnosis's.

Stay tuned...

T Moore, CCO
Blue Heel Society

Wordless Wednesday

I LOVE  this photo. 

I'm biased. 

It's my girls. 

 They are united by blood AND insulin. 

Fighting together as T1D's.

 Fighting together for a cure! 

Meri and Ryan Schuhmacher

Our friend and mother of 4 boys, including 3 with Type 1, Meri Schuhmacher, held her husband of 19 years in her arms as His Heavenly Father decided it was time to make him whole this morning after a very valiant battle with cancer.

Although no words can really help to ease the loss you bear, just know that you are very close in everyone's thoughts and prayers.