30 days in a whirlwind!! #NHBPM

Today is THE day...THE last day of National Diabetes Awareness Month and the last day of our 30 day blog challenge. Phew...I so love doing these challenges.

 For one, it forces me to sit down and write. It makes  me take the time to do it because it's so easy to just do it another day. But I didn't do it all. I had help this month with contributions from Thomas Moore. I love his take on things. It's nice to know that maybe, as caregivers, we are going through the same things OR going through different things and yet are there for each other and can learn from one another. And isn't that what we do in the DOC?

The second reason...topic ideas. Some days I struggle with how I want to approach the given topic, other days, I can't stop writing.

The third reason...I'm competitive...I HAVE to have all 30 days posted...no get outta jail (er, blog) free cards here. MUST POST!!

So this month has flown by. Between all the diabetes events, blogging, caring for diabetic kids, working, taking care of everything...it's just been crazy!! So the topic today is to recap the month and I will recap with a single word...WHIRLWIND!!!

I hope you have enjoyed reading our posts as much as I (and Thomas) have in writing our posts for you. And YOU are why we do what we do at Blue Heel Society. So thank you for reading, interacting, and joining our efforts to educate and advocate for ALL types of diabetes with one Blue Heel (or shoe) at a time.

Have I changed? ... #NHBPM Day 29

The National Health Blog Post Month is almost done!! I can't believe it!!

Today we are asked to share:

"How being a patient/caregiver has changed you."

Hmmm...I've always been a speak my mind type of gal. If I feel strongly enough about "x" then I will stand firm on my belief. It doesn't take much for me to get fired up about something...just ask my hubby! The difference is...my kids. Momma Bear comes out in FULL force and will kill if needed...well, kill is a strong word but you get what I mean. Since I have been vocal and advocating for diabetes for Nora since 2004 it's been an easy transition when needing to be vocal and advocate for our son, Jackson, and his bleeding condition. This has set me up to now be vocal and advocate for Evelyn. Although, with Evelyn, it's a little different, being that she is 18. I think, if nothing else, she has seen me in that role and has been doing that for herself for a while in everything she does.

I will tell you that being vocal and advocating for your kids helps in ALL aspects of their health condition. It helps with talking with Doctor's, Nurse's, the dreaded Insurance, school, sports...just about everywhere. I know when someone is feeding me a line of BS and will call them out on it instead of listening to them and actually doing it. I have told Nurse's what is expected when they stick my son for his infusion...and I've told more than one Nurse that I allow then two tries to gain access to his vein and if they don't succeed then I may have to punch them. Ghastly! However, if it's your son getting stuck for IV access, you might say the exact same thing...maybe nicer. BUT those Nurse's know I mean business!!

It has changed me by speaking out about, educating, raising awareness and giving people a glimpse into our lives. And by people I mean you, your neighbor, the stranger down the street, the person in another country and yes, even talking to lawmakers. Pretty much I'll talk to anyone and if they learn something BONUS!!

I guess it's changed me by turning my getting fired up into getting fired up for a PURPOSE....MY KIDS!

Day 28 of the WEGO #NHBPM - "Trolls/Snakeoil /Bullies"

For Day 28 of the WEGO National Health Blog Post Month we are asked to 'Write about how you deal with mean comments / trolls / snakeoil / or bullies".

To be honest, this was a morning that started out BLAH, and I was having problems and drawing blanks for the above topic, Bonus topics and came *THAT* close to using one of our "Get out of posting FREE" days. Then it dawned on me (as dawn came upon me), that as I looked at the above topic it became very clear. It became ever so apparent that I just stumbled upon another reason why we love our BLUETIFUL peeps so much.


In the five or so years I have been involved with the Diabetes Online Community (DOC) I have seen SO MANY mean comments/Trolls/Snakeoil /Bullies that at times it made me wonder why I even try. Bickering between the masses is something that normally is just there in most every Community, online or in real life, and it bothers me still to this day.

WE DON'T HAVE TO DEAL WITH THE ABOVE DISTRACTIONS!!!

I am still in amazement at this discovery that I just made today. I can honestly say that in the year & two weeks we have been in operation, I cannot remember a single instance that sticks out, where these distractions have been an issue.

My normal self would get obsessed trying to figure out and explain WHY this is. Instead, I am sticking with the "If it works don't fix it" theory. But I can explain the WHY part very easily.

We rarely talk directly about diabetes in our Blog post's, Facebook Fan Page, various guest post's we are asked to do, and interviews. We don't need to bring up WHY we are all gathered together under a united front, it is implied by our Message & Mission. We get enough about diabetes in our REAL LIFE, and our Community can be somewhat of a 'safe haven', an escape if you will, from the Diabetes Monster.

Another reason in my mind is that we embrace EVERYONE affected by diabetes...all Forms (Types), Caregivers, Parents, Siblings, diabetic or not.

Now we can't take all the credit, because without our Friends/Fans/Followers, this would not be the case. We are blessed with some of the most amazing people that truly understand that we do not have to be 'Debbie Downers' all day as that is counter-productive to why we are here, and the simplicity of wearing a Shoe of Blue is all it takes! We know the WHY part all too well...

Today Post 27...

"If I could go anywhere..."

This post I dedicate to my rock. The one person that has been there through everything for over 22 years. The one that has been there for EVERY diagnosis. Who has hugged me tight and dried my tears. Given me high fives when things go right. And has shown compassion and understanding when I need to vent about the injustices of having three kids with chronic illnesses.

                                                 My best friend. 

                                                  My husband. 

So as much as I would LOVE to say "If I could go anywhere"...I'd take the family to Disney World and leave the chronic conditions behind. I'm not. The one person that is there for me is the one person that gets the most neglected...(well, besides the dogs). I'm so busy helping the kids, running them here-there-everywhere, volunteering for activities, signing up for things, signing HIM up for things. There is no time for us. Well...if you include the 5 minutes of silence before our heads hit the pillow and we are dead asleep.

So..."if I could go anywhere"...it would be with my best friend, my hubby. And I'd like to throw in... to one of those island huts just off the ocean coast where the skies match the ocean in their majestic blue and the beach is white sand. There are no site changes to do, no fingers to prick, no IV's to give, no insurance calls/fights, no appointments to make, NOTHING!! But, I'll take a night out. Shoot...it doesn't even need to be fancy...we can go to Wendy's. Just being together, uninterrupted...would be heaven! Thank you Jojo, for all you do to support me and our family. <3

Interview with a Vampire...well, not really! ...Day 26 #NHBPM

Good Morning and welcome to day 26. Today I will interview "something" we, unfortunately, know all too well. "It" came 100% uninvited into all of our lives and yet we deal with "it" 24/7/365.

"It" is diabetes.

"Thank you for taking the time to sit down with me and let me ask you a few questions."

"Sure. It's not like I'm going anywhere."

"So how do you pick your, ahem, victims, shall we say?"

"That's easy. I don't discriminate. I'll choose young, school age, heck, I'll even go out and get me an adult. I like showing up when no one is expecting me."

"Why do you show up? I mean, we don't really want you around."

"Ahh...don't care for me 'eh? Well...I figure people really don't have enough going on in their lives that I'll give them something to do. I hate to brag, but I'm anything but boring."

"That's for sure. On to the next question...why do you like to make it really hard during holidays, playdates, SLEEPING?"

"I work everyday, all day. I love my job and NEVER take a day off so why should you? By the way, sleeping is sooo over rated, don't cha think?" (chuckle)

"Uh, yea. Over rated...pfft. What are your favorite things to do, since you never take a day off?"

"My favorite things to do are really quite fun for me. You know when your diabetic eats all that food for lunch and you've weighed and calculated every carb and have them bolus perfectly for it? Yea, I like to play with them and make them high or low...depends on my mood and what they have planned for the day. I try to complicate things the best I can. Oh...and for added kicks that same lunch they eat the next day...I'll do the opposite to them. Oooh!! I love doing this because you caregivers get your panties all in a ruffle...too much fun!!" (giddy with excitement)

"Nice. Well you know, there are some amazing scientists after you. They are trying to cure our diabetics. So what will you do, let's say, when you retire? Although, I personally, would rather see you dead."

"Death!? I'm truly offended. That's awfully harsh."

"Well, ya know. There is no love here."

"Ouch! (chuckle) I don't plan on going anywhere. Those amazing scientists have been after me for years. They can't catch me. I've eluded them for so long..."

I interrupt...
"Dr. Banting stopped you from killing kids."

"Ah...yes. Dr. Banting. umm...that's rather a sore subject with me."

"I bet. With his discovery of insulin, diabetes was no longer a death sentence. In fact, diabetics can live a long and healthy life WITH insulin."

"...ah, yes...umm...I...uh...."

"What?! Insulin got your tongue?"

"well...I've gotta run...I've got lots to do today. Bye."

*I'm so sorry, as you see, Diabetes cut the conversation short. I think I'VE ruffled "it's" feathers. I had lots more to say to "it" but I wouldn't be able to air it...a few choice words, if you catch my drift. I hope you've enjoyed my interview. Have a great day.

"Real Housewives of the DOC" Post 24

Today's post is:

"Write a TV episode of your favorite show that features someone with diabetes. What do you want people to know?"

Now, don't judge, but I love me some Real Housewives of (insert ALL of them here)!! This is probably THE only show I watch with any regularity. Sad. I know. But sometimes it's nice to get lost in some mindless show. Don't be hating.

The twist is that we don't have on set hairstylists, a fashion line we are working on or a singing career (what's up with that?), vacations to Africa, endless shopping, or the time to be offended for something some other housewife has said about us. And if you do...please tell me your secret!! As I must be doing something wrong!!

So I will insert 5 D Mommas from your area of town. We aren't fully made up complete with false eyelashes.  As a matter of fact, it's a bonus that we have mascara on. Probably, due to the fact that we've been up all last night battling lows that our diabetic children have been having. We have been on the phone with the mail order pharmacy for 4 hours explaining to them that 300 test strips are NECESSARY to our child's care. And that our growing child MUST have 3 vials of insulin because they are taking in more carbs then the month before. We have been fighting with medical insurance to cover clinic appointments every 3 months and that we MUST have (insert medical device here) not because it looks cool but because it is medically necessary.

The cameras will follow us at every step. Checking BG at midnight, 3 am and 6pm. How a low was treated. With mass consumption of carbs because we want our babies blood sugar in range if not a tad bit higher so they will awake in the morning. The audience will see us at every Endo visit. Hear our every insurance, Dr and pharmacy call. They will also see how diabetes impacts the WHOLE family. How kids in the family who don't have diabetes feel less important because their D sib is getting ALL the attention. The camera will follow the D kids at school and on sports teams or hanging with their friends and see how some of these areas are a comfort for our D kids because they have supportive teaching staff, coaches and friends. But then some will see the D kids being treated as a bother to the classroom or sitting the bench because the coach is afraid to play them or friends that don't show compassion to them.

The audience will see every sigh of relief as we see our slumbering D child exhale and live another day. They will see every tear shed by parents who have fought for their child for school rights, insurance coverage, Dr appointments that don't go well or DO go well, or just from pure exhaustion and the fact that we can't take this awful disease away.

But we aren't a bunch of whiners either...

The audience will also see every triumph with every anniversary of diagnosis that the child made it through. With every good grade on a test that comes home because D played nice and your child was able to study and take the test because their blood sugar was in range. The basketball shot, the football snap, the soccer kicked in for a goal or personal records met and achieved even with diabetes. Most importantly, the audience will see the D kids as well, kids! Yes, they need to take blood sugars, take insulin, do site changes, test for ketones and  all that D related stuff. But I have found they are wise beyond their years. They value friendships. They advocate for themselves at school, in sports and even in front of Congress.They have a wonderful compassion for people with disabilities or diseases. They are sweet, caring and understanding.

I don't want audience pity. I want audience compassion and understanding. I want them to know it's NOT depressing or all "doom and gloom" everyday but it IS life changing.Diabetes DOES suck but it doesn't stop them from doing what they want OR from being a kid.

Now...to find a film crew, hairstylist, personal chef and trainer and some more fabulous blue heels. Real Housewives of the DOC unite!!

*author's note: I MUST give credit where credit is due...this blog post was inspired by a conversation BHS had one day about a little idea Ms. Diane brought to us about the "Real Housewives of the DOC". It's been stuck in my head since then and I finally found an outlet for it!!*

Day 21 and I'm Mental!

Today, our challenge is to write about:

"Mental Health"

Of course, I'm talking the mental health of a mother who cares for diabetic kids. And there are days...

Days when I've been up all night fighting lows or highs.

When the CGM won't shut up!

When I've been force feeding my kid smarties, skittles, juicy juice only to have her meter tell me she is lower than what she started out at.

Setting temporary basals for how much, how long, what am I doing?

All the while my baby sleeps peacefully. The only acknowledgement of her said low is the skittle residue she tastes in her mouth.

And then I am to function as a human being the next day, seriously?!?!

Then I'm on the phone with the school nurse because she has the rebound highs or lows depending on what she was the night before...

I'm downing the umpteenth cup of coffee.

Holy crap, Batman...we need a nap here!

There are those days when I feel like throwing in the towel. Don't wanna deal with D anymore!

But then there are days numbers runs beautifully. Where D has decided to play nice. When everything works perfectly. Our world, MY world is good.

And then D plays dirty and well...it's just enough to make you crazy!! Really.

Chasing highs/lows, running after her to take her blood sugar, stopping a bite of food before she eats to make sure she has taken her blood sugar or measured out her food. Talking diabet-ease, like a foreign language. My poor husband can't keep up with our conversations! Answering phone calls, scheduling appointments, attending meetings, etc. I'm pretty certain that if Google Earth had x-ray vision into our home I'd look like a chicken with it's head cut off!!

But, nope, it's just crazy me...a sleep deprived, D Momma!

Day 20 Bonus Prompt...

The challenge prompts for today:

"a health moment I regret.."  or "alternative treatments/regimens/medicine. What do you support?What is crazy?"

I guess I'm lucky as I don't have a health moment I regret. And just thinking of alternative treatments etc has me rolling my eyes all the way back to last week..don't get me going. Insulin is what I support and administer. PERIOD.

So I have chosen to write a bonus prompt:

"write about traveling with your disease".

Have you ever traveled with diabetes? If you are lucky enough to have done so and survived yeah for you!! If not, I will gladly share my experiences with travel. As most of you know, who read our blog regularly, I have the two diabetic daughters and a hemophiliac son. Last November we traveled to Chicago for a National Hemophilia Conference...think Friends For Life but for the hemophilia community. I had to pack for one of my diabetics (as the other one hadn't been diagnosed yet) AND the hemophiliac son.

It was an entire suitcase for both with me carrying an extra bag with back up supplies!!

Imagine your diabetes cabinet x 2!! I was beyond stressed to make sure I packed EVERYTHING!! We were only there 3 days but a lot can happen in 3 days.

Diabetes:

Insulin, pump sites for everyday x 2 (just in case), reservoirs for everyday x 2 (just in case), alcohol swabs, CGM charger, CGM sensors x 2, numbing cream for CGM, CGM inserter, Tegaderm, glucagon, Emergency kit (that has one, if not more, of everything listed), juices, skittles and medical letter of necessity...have I forgotten anything?

Hemophilia:

Factor (medicine) x 4, sterile gloves x 4, IV butterfly x 8, empty syringes x 5, saline flushes x 8, alcohol swabs, gauze, band-aids and medical letter of necessity.

These supplies pretty much took up a carry on bag for the plane. There was no way I was checking that bag!! And then I had to throw extras of almost everything in my big, over sized, mammoth of a purse. But we HAD to be prepared. Worst case scenario we would be able to take care of anything. Things went well...no issues with either kid. (Thank ya Jesus!!) We came back with a full suitcase minus the things we used as expected.

Bottom line...don't let a luggage filled suitcase full of your medical supplies stop you from traveling. We would've missed many fun times if we stayed home and let this disease cripple us. Go out and DO!!

It's a Matter of Life and Death...day 19

Today's challenge in the our National Health Blog Post Month for WEGO health is not quite a challenge but a heavy topic in the house where diabetes lives...

"write about life and death..."

Death is something my 12 year old daughter has been dealing with since 2005. I'd say the past couple of years it's been an issue.It doesn't cripple her in fear or in not doing things. It's just on her mind. Not for sure what triggered it. She's never had a close or bad episode of D. But she is very aware that early death caused by diabetes is a reality for her. A few years ago she even wondered aloud, "Mom, how do  you think I'll die?" Uh, hopefully you will live a long healthy life I told her as I crumbled inside.

My eldest daughter, took to sleeping in my 12 year olds room to make sure she was okay. She would come get me if I didn't hear the pump alarms going off. And in turn, since her diagnosis, she likes me to check her in the middle of the night; in case she goes low. So, yes, we still do the 3am check! I don't mind. It gives us all piece of mind.

On the flip side, they don't let diabetes stop them. They live life to the fullest. Nora is a multi sport player while keeping good grades in school. Evelyn is working a part time job and going to college full time. They both help me at JDRF Outreach Events when they can. They like meeting other diabetics and talking with them. They have fun and goof around like non D kids. Sure, they may need to stop and take a blood sugar or bolus for carbs eaten but they are still "normal" kids.

I guess it's a good/bad thing. I mean, at 12, I didn't think about death. In my experience, old people died; not kids. But with my kids knowing about mortality I think it helps with them taking an active role in their personal health care. It helps them enjoy life. They live for the moment and aren't afraid to live for their future. I think it's taught me to cherish the time I have with them, do the best job I can and live for the day!

Day 18...Dueling blog

Today on our 18th post I'm a blogging duo...we have a choice of two topics per day but both are resonating with me so I'm covering both topics.

The topic for today:

"I want to change this about healthcare..." or "Write about your advice for someone caring for a patient with diabetes". 

As I said, I'm doing both...what can I say, over achiever!

First...healthcare.

I would like to change the relationship we have with healthcare. I don't wish to be a member number...I wish to be a name. A family with needs. LOTS of needs. Just recently, our insurance has done just that. Without going into boring details. I feel like I've been punched in the gut. The rug has literally been pulled out underneath me. And the crappy part about all this...they haven't even notified me of the changes. Our hospital has and has been advocating on our behalf for the past two weeks. So here we scramble to fill this huge hole. Bottom line we will be getting what we need but in a different way. But it's just the way they haven't shown one ounce of concern for us as a family that has been on a journey of healthy care and not to mention the TONS of money they make off my kids chronic conditions.

Second...advice.

Patience and compassion are key for someone caring for a patient with diabetes. As many of the caregivers out there know there is a fine line in caring, showing concern and coming across to the diabetic as shall we say, nagging?! So patience is key. Gentle reminders to check BG's or if snacks/meals have been bolused for. Compassion for the diabetic who is tired and/or frustrated. Who doesn't want to wash their hands before checking their blood sugar. Who wants to eat first before figuring out carb counts. The caregiver needs to let the diabetic vent and get frustrated without themselves getting frustrated.

And isn't that easier said than done?

One of the key pieces of advice I give, especially to newly diagnosed families, is NOT to beat yourself up. As we all know, diabetes has a mind of its own. It doesn't matter how accurately we weigh food and count carbs, if BG's are taken precisely every three hours, if activity level is just right or hormone levels are perfect...D will come in and mess all that up. ESPECIALLY when first diagnosed. I'm not telling people to be lax but don't consider yourself a failure for doing the best job you can do as a HUMAN pancreas.

Advocate for your diabetic. I'm not talking march down to Washington and speak directly to the POTUS. By all means if you wish to then please do!! But, if that's a little out of your comfort zone advocate starting at school or work. Fight for your diabetic. They have rights. They  have diabetes. But, first and foremost, they have rights.

.Lastly, as I've seem to have written a book here, love and listen to them. They need you more than ever. Even if they say they don't! Be their rock. Their sound board, wipe their tears, laugh with them over finding test strips in weird places, rally with them when they are feeling down, rejoice for the BG check you didn't have to remind them to do and be their big, squishy pillow when they need a hug.

Day 16: Inspiring a D Mom..

Woo hoo!! We are half way through the month of November and NHBPM!! We hope you have enjoyed reading our blog so far.

Today's post is to use a picture or video to inspire a post.

                                          Here is mine:

In actuality it should also include my son Jackson. But do you know how hard it is to get all three of my kids in one picture?? Let me tell you...it's near impossible! I'm still trying to get a picture of the girls showing their pumps off, now that Evy is pumping. Maybe I should bribe them...I don't ask for much! What's one photo?!?! Anyway...

These girls are my inspiration EVERYDAY.

Why I write this blog for Blue Heel Society.

Why I own so MANY pairs of Blue Shoes!!

Why I wake up in the middle of the night...EVERY night.

Why I have become an advocate for diabetes. 

Why I will NEVER stop until a cure is found.

Why. I. Breathe and Live. 

These girls go through so much. Although they are at different stages of diabetes. Nora, I consider, the Pro, as she has been fighting D since 2005. Evy, I consider, the newbie, as she is only 5 1/2 months in. Each has their benefits and drawbacks. As a caregiver, I am a Pro. Been dealing with this since Nora was diagnosis. I have to remind myself to be caring, patient and listen. I have to allow her to feel her feelings without me chiming in something equivalent to "get over it!" 

They inspire me daily, sometimes hourly, with their resiliency, bravery and positive attitudes. I am humbled to be in their presence as I am just their mom...they are the true heroes, my inspiration.

Who is your inspiration?

Negative feedback...

First off...I MUST say Happy World Diabetes Day 2012!!! I know there are many of you doing some great things today and I can't wait to see/read all about them. But that's another blog post!

Today, our challenge is:

"advice for dealing with negative feedback in your community".

And boy, oh, boy...don't we have some?!?!

You all have seen it or been on the receiving end of it.

It may start with a facebook status update. Everyone who "gets it" replies with their ((hugs)) and well wishes. Then you might have one comment thrown in the mix that may come off as well meaning but then it's really not.

It is a shot at you...a dig, if you will.

Then it's a free for all. All the well wishers attack. And I use that term loosely. The DOC is just like that. You mess with one of us, you mess with all of us.

Questions, accusations and "I know better than you because I know EVERYTHING about diabetes INCLUDING how to care for your child/loved one whom I never met!" The one stand alone is truly standing alone, looking like an ass and their only counter attack is the "I thought you'd be open minded"!!

Oh, I'm very open minded UNTIL you tell me how to take care of my kid's diabetes.

So my advice for the negative feedback is to stay your ground, don't waver and call their BS. Only YOU and your kid/loved ones Doctor know whats best for them. Not your Grandma, Aunt, Cousin twice removed, the lady you meet in the grocery line or the facebook *friend*.

And if all else fails...DELETE them!! (on facebook!! NOT in real life!!!)

I'm calling BS on ...

This is a fun challenge...call BS on something. What's something that is just ridiculous?

Well, if you know me, I'm all about calling BS on things that just sound crazy. I'm not afraid to speak out and challenge it. I may not always be right but I take it as a lesson learned or an opportunity to educate.

However,

I'm calling BS on the myth, yes, myth that diabetes can be cured.

There is no cure found in any amount of cinnamon.

Or moss that grows on the backside of a tree in Brazil.

Or any, ANY, pyramid schemed, "I've cured T1D in my family and I'll tell you how...all you need to do is send me $xxx and I'll tell you my secret". Really, you've cured T1D and you want to charge me to cure my kids?? Selfish. That and the fact that your a business person and NOT a scientist? hmmm...yep, NOT!

Oh, and god love you Hallie Berry, you are a fine actress but you did NOT cure your diabetes. In fact, you + diabetes = I don't wanna hear it. You may have opened the eyes of many to look for the signs of diabetes in themselves and/or their loved ones and that's great and admirable. But please, stop there.


Or any diet (Paleo, alkaline, Atkins, etc).

Now, don't get me wrong. Some of these lower carb diets may help maintain your blood sugars and decrease your amount of insulin needed but if you are insulin dependent then you NEED insulin. Even if you don't eat carbs.

So, I'm calling BS...

NON of these things cure diabetes.

For me, I'm letting the Scientists do their thing and find a cure.

As far as all of the above...well....

Here is a video that Joanne, at death of a pancreas, made about a year ago and I just love it! You can check her blog out here.

To Post or Not To Post...that is the question...

Today's WEGO blog challenge is:

"Should people post about their (or loved ones) health on facebook? Why or why not?"

Pfft...uh, duh! Yea!

Well, I should say, if you feel comfortable with it or if you are posting about your loved ones health; that they are okay with it first.

If I'm posting about my girl's diabetes or my son's hemophilia on my personal facebook page I am NOT looking for sympathy. I'm looking to educate and raise awareness of said disease. This month has been a perfect example. Many of us in the Diabetes Online Community have been posting on our facebook pages: facts, a day in the life and challenges with diabetes. And in doing this, I've had friends and family reach out and ask questions.

It gets the conversation rolling.

It gets the awareness raised.

It's educating people.

If my posts help open the eyes to others to see the seriousness of diabetes,

the signs of diabetes,

the reality of an invisible disease

then...

 I've done my job.

Community Care Package...

Todays' WEGO challenge  is create the perfect care package for your members or fellow patients. I'll even tailor it to the newly diagnosed...things I/my daughters received/would've received at the initial diagnosis.
I think I would have to create two care packages.
One for the diabetic and one for the caregiver.
First off...if I could wrap up the BIGGEST hug ever and send it to each diabetic AND their caregiver... that would be the best care package ever!!
Those of you that know about the DOC (Diabetes Online Community) know that virtual ((hugs)) abound. And I know I can feel them just as sure as they are given and sometimes that's just what you need!
For the Caregiver care package:

• Resource packet with every website that has to deal with diabetes


• Diabetes blog list


• a local mentor so they know they are not alone (a mentor that can even come visit you in the hospital!! That would be awesome!! Someone who just gets it and what your going through!!)


• Calorie King book


• diabetes kit/bag (something to put and organize all the needles, alcohol swabs, insulin, test strips, blood glucose meter, low blood sugar supplies in)


• chill pill/oxygen/wine (because your ready to flip out with all this extra stuff they make you learn to keep your kid alive!)


• chocolate (why? It's chocolate...do I really need a reason?!)


• Blue shoes!!!! 

For the Diabetic:

• Resource packet with every website that has to deal with diabetes (age appropriate/or if applicable)


• a local mentor that is their age...this is KEY!! Someone who could come in and talk to your child and they have T1D too!! Instant friends!


• diabetes alert ID bracelet...make them wear it IN the hospital so they wear it ALL the time


• assortment of low blood sugar options (juice, smarties, skittles, glucose tabs, etc)


• App that teaches them (age appropriately) what diabetes is and things they can expect in their new life


• journal/sketchbook to express their feelings about a new diagnosis


• Blue shoes!!!

Getting a new diagnosis is scary and so is having tons of information thrown at you all at once.
For me, getting the second diagnosis wasn't any easier or less heartbreaking but I knew what we were facing and I knew she would be okay.
Yes, some of these items are silly but what's the fun if we can't have fun with it, right?!?
Your turn, what would add to either of the care packages?

Redesign...

Day 7 Challenge: Re-design a Dr.'s office or Hospital Room...

Hmmm...well my first thought is a padded velcro wall to put my 4 year old on while I'm in the Endo's office. That way he could just hang around, stuck to a wall...just a thought!

I think it would be cool, especially for younger kids, if there was a wooden puzzle type contraption with gears etc...you've seen them...they usually are attached to the walls of some kids area...but anyway, to have this puzzle of a body outline. Then you could have movable pieces, heart, lungs, liver, pancreas and use it as a fun teaching tool for the younger kids. To show them what a pancreas looks like, where it's located, what it does or ahem...is supposed to do. Kids learn by doing and it makes much more sense than telling, say your 4 year old, you have diabetes, period.

The room should be nicely lit and a little comfy as when you are in the Endo's office you are there for quite a while. Maybe a little love seat, perhaps? Not that I wanna live there but it'd be nicer to sit on. Of course a dry erase board is key with WORKING markers. A TV is nice but we rarely use it. And room for crying out loud! Ever been in a room with more than one kid, a nurse, an Endo and whomever else feels the need to come in? I need room people! (*oh and if you are going to leave me in the room waiting longer than what I was sitting in the waiting room...leave me in the waiting room...I don't want to be confined with my children in a little room.)

The waiting room should be nice and clean with a TV playing quietly. I don't want toy options as then it makes it harder to get back to the room and then when trying to leave. I'll bring my own!

Of course, I'll take a massage therapist, nail tech, cabana boy and room service...but that might be pushing it...just a little!

Extra! Extra! November is turning BLUE!!

Day 6 WEGO Challenge: New-style post.

NOVEMBER TURNS BLUE!!
by field reporter: Jen Loving

No matter where you live or what you've seen on your fb newsfeed (other than annoying political ads) you may have noticed more blue.

What's it for? What's going on?

Well, BLUE, is the universal color for diabetes awareness. Doesn't matter what TYPE of diabetes...ALL diabetes. This is the month that millions will raise awareness  and advocacy for a growing disease...diabetes. It doesn't discriminate. It likes all ages, races, religions. It doesn't hold back and can be deadly if not taken care of.

The diabetes community will come together on November 14th, also known as WDD or World Diabetes Day. The date is significant because it is the birthday of Dr. Banting. The discoverer of insulin; a drug that is used to keep all Type 1 diabetics alive and used with some Type 2 diabetics as well. Many communities are organizing events to light up significant landmarks blue. For example, Niagara Falls will be lit blue for 15 minute increments starting at 9:45 pm, 10:45 pm and 11:45 pm and it doesn't stop there. According to the International Diabetes Federation web page, 1000 monuments/buildings will be lit blue in 80 different countries!! All in the name of diabetes!

It truly is an amazing evening.

All gathered for diabetes.

All supporting diabetes.

 Not sure if there is an event in your area? Contact your local diabetes chapter to see what will be lit in blue. If you know of an event be sure to share so that others may join you! No matter if you attend a local event or don't have one around you ...be sure to show your support and wear BLUE!!

Being thankful, excited and inspired!

Day 5 WEGO challenge is:

"Write a list of 3 things that you're thankful for/excited about or inspired by"

I think I'll do ALL three instead of just one or the other! (I'm such the over achiever!!)

3 Things I'm thankful for:
1. Insulin

2. Family

3. Insurance

3 Things I'm excited about:
1. November...after all it is National Diabetes Awareness Month!! I'm looking forward to all the events our local JDRF chapter has lined up this month!

2. Wednesday, 11/7, is the day Evelyn gets hooked up to her pink Medtronic Revel pump!!

3. the Future...many exciting things are happening here at the Blue Heel Society and I've got some things in the works...it's exciting to see where these things will lead us!

3 Things that inspire me:
1. My kids. If it weren't for them I wouldn't be doing any of this!

2. YOU the DOC (diabetes online community). The support and love you show all of us is just a big warm fuzzy bear hug!!

3. The color BLUE...corney? Maybe, but when I see blue I see possibilities!!

What about YOU?

What are you thankful for/excited about/inspired by?

Warning: Full Disclosure!

Day 4 of the WEGO National Health Blog Post Month Challenge asks: 

"How do you decide what to share? Why do/don't you share?"

I'm pretty much a no holds back, talk about everything type of gal. What would you learn if I kept how I felt about diabetes to myself? Why would I bother writing? How could I help even just one of you if I filtered myself? I like to think of myself as a realist. The glass isn't half empty or full...it's got water in it...what difference does it make? And that's how I approach most things in life. My kids have chronic illnesses. I deal with the here and now. I feel it's so much easier to deal with life that way. Don't get me wrong, I prepare for the future but I don't dream too long about what a cure looks like. I mean...I'll listen to the research. I'll see where it's going and what's on the horizon. But I don't have that dream of being pushed ever so gently on a tree swing, by my husband, in a frilly dress with lush green grass, blue skies, perfect weather and have PERFECT children running barefoot without a care in the world as sweet happy music plays in the background. In my world...the record needle scratches to a halt (oh dear gawd...some of you may not even know what a record is!!) Dogs bark, kids running around yelling, homework getting done, dinner on the stove, emails to send/reply, blood sugars to check, site changes to be done, insulin supplies to reorder, meetings to make, blogs to write and advocacy to be done. I deal with NOW. I hope that my full disclosure helps some one. Even if it's just knowing that there are other families dealing with craziness. 

That is why I disclose everything. Well...

ALMOST everything. 

I won't disclose my financials. Just know we are not independently wealthy nor are we destitute. We struggle, I'm sure, like most of you who take care of chronically ill children. 

When you read a blog post from me...it's really Me. 

The good, the bad, and the ugly...

A Convo with Our Endo...

Day 3 WEGO National Health Blog Post Month Challenge:

"Post about a conversation with your Doctor"

That's easy...today we had Nora's three month check up! She's been running higher, in the 200's, however, we are in full swing puberty. Some days we make zero adjustments others we run temp basals all evening. Of course, I was interested in her A1C (the three month average of blood sugars...basically, the diabetic/caregiver report card. For those of you that have been following our blog for a while you know I don't stress over this number. Because it's just that...a number. I don't beat myself up over it. I take the knowledge I gain the day of the check up and do the best I can.

We have a wonderful Children's hospital here in Cincinnati and we love our Endo! It's the first Doctor that readily admits that we know more than she does about Nora's diabetes. She listens to our concerns and talks to us and helps us come to a plan of action. The other thing about her that I love is she really talks to Nora. This is huge...how wonderful for Nora to go into HER Doctor appointment and participate in HER care. PLUS our Endo goes to Diabetes Camp every year...how cool is that?!? She is just an all around awesome person who happens to be Nora's Endo! 

It's a teaching hospital so it's not uncommon to have multiple doctors or students in our room. Today we had a Med Student, second day on the job. She was a neat lady. She talked to Nora, asked her questions about the pump and CGM and talked girly stuff. If she chooses to walk the Endo path I think she would be fantastic! Anyway, when our Endo came in she looked at all the graphs from the CGM read out asked us what we thought and we stumped her! It was kinda funny...she was at a loss as to what to do (and not in a bad way). She was leary of tweaking numbers too much as to cause too many lows/highs. She finally made peace with herself and after getting our gut feeling on the situation decides she isn't going to change a thing. She's happy with Nora and her diabetes and how she is dealing with all of it. 

Goal: keep doing a good job! 

High fives all around and a see you in three months. I can deal with that. She knows I can tweak on my own and gets that. Like I said before, she knows we are the professionals here. And I feel blessed knowing I don't need to go into my kids Endo office and fight to be heard, or feel guilty because of how her diabetes is or isn't being cared for or feel rushed. We are cared for, praised and loved. And what could be better than that?

(and for those with inquiring minds...7.7 was her A1C...down .1...and that my friends, I'll take all day long!!)