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?

A Luminary Who Walks the Walk

It is our PRIVILEGE to welcome Alison to the Blue Heel Society Luminary Team. Here is your chance to walk in her Blue Shoes......


Tony's Story:

When Tony was 18 months old, we moved from Washington to Houston, Texas. Even though it was spring we were miserable from the change in weather. We had our first house with a backyard and spent most of our time outside. When he was 20 months old, I noticed Tony was drinking lots of water, but thought it was from the heat, as I was drinking a lot too. The soaked diapers made sense from all that water. Then on May 9, 2007 he slept most of the day. My husband came home from working offshore and commented that he looked real skinny. The next morning, he started to breathe weird. I called the pediatrician and got an appointment for that afternoon. Before the doctor came in, the nurse lectured me because I didn't give him any cold medicine for his labored breathing-which was getting worse. The pediatrician did an exam and told us to go the emergency room because Tony was just dehydrated from a virus and needed an I.V. We waited for a long time in the ER.

Finally someone got a blood sample from him. Moments later, it was chaos. We were told he was in diabetic ketoacidosis and in serious danger. I immediately thought the worst. My Aunt passed away from type 1 diabetes complications when I was a toddler, and from what I knew of her life, it was rough and cut tragically short. That night a critical care team arrived from Texas Childrens Hospital for transport. We stayed by his bed all night in the PICU. For awhile it did not look like he'd make it, a doctor even warned me that she has seen children pass away from this. They had me talk to him every hour to see if they could get him to respond. By morning he woke up and was asking for his sippy cup and I knew he'd be fine, especially when he waved hi to every woman that walked by. He spent a few days in the PICU and a week in the hospital. We had a crash course on how to take care of him; it felt odd

Schedule

to actually bring home a child with instructions on how to keep him alive!

He could speak only a handful of words so there were many close calls with low blood sugars. He got another emergency transport ride and went to the PICU 6 months later from a stomach bug. Just a little illness throws his body out of whack! We decided to move back to our hometown to get help from family and we appreciate the support we have. He loves weekends at his Grandmas and playing with his cousins. His doctor at Doernbechers are wonderful and has made a lot of changes that make his life easier and better. Tony will tell a doctor to their face that he doesn't like them but tells us he loves his diabetes doctor! Now he is 7 years old and is doing well. He is in second grade and obsessed with ninjas. He was later diagnosed with learning disabilities and neurological issues.  Some doctors believe it's due to his brain swelling in DKA, others say he was born this way but he is getting lots of help.  He's at the great age of asking "why" every few minutes and has a lot of questions about diabetes. A lot of the questions are hard to answer without a few tears. He tells me everyday he hates shots. Most of the time he can tell me he's low, but he hates to slow down to test and treat. He is a great big brother to his almost 4 year old sister, Gemma. They are nearly inseparable. Sometimes he tells me he wishes she has diabetes so she can be like him but then he says he doesn't want her to get hurt like he does. She often tells me she is low in hopes of getting a glucose tablet!

There needs to be more awareness about this disease. Even though I have a family history, I did not know about the signs of type 1 diabetes. A nurse and doctor missed it too. Many people are shocked that such a little guy can even get it. Or even that he got it in the first place since we are a very healthy family. Tony eats a healthier diet than most kids do-he loves raw almonds, berries, and all the vegan food I cook. But because this is an autoimmune disease a healthy diet will not prevent or cure it. When people hear the word "diabetes" they think of obesity problem in America so it must be our fault that he has it. We are grateful that we have better technology than what was available for my Aunt. We look forward to see what the future brings. Someday we hope Tony and others with diabetes will have a cure and he will be able to say "I used to have diabetes"!

Alison
alison@inmyblueshoes.org 

Day 8 WEGO Challenge: “The best doctor’s appointment”

                        

Day 8 of the WEGO Health ‘National Health Blog Post Month’ 

“The best doctor’s appointment”

Although I am pretty sure this prompt is intended to describe a hypothetical Doctors visit, I have a real world experience that was *that* good that I can use it instead.
My favorite Diabetic, my Wife, that has one of the many co-morbidity's (related health issues) that diabetes brings...with a twist. She was actually diagnosed with Neuropathy (nerve disease) in her feet, BEFORE she was diagnosed with diabetes. 

I will not go into the details, however, in a nutshell this nerve damage can not only cause numbness, but also a very painful situation that she describes as "A little stabbing man in my feet". Now I know it sounds funky, but along with this pain & numbness she also get's Ulcers (wounds) in one foot in particular. It has gotten so bad that at one point a couple years ago, when we had NO coverage and everything was out of pocket ($$$), she came *THAT* close to having her entire left foot amputated. 

The main problem is that like diabetes, these Ulcers are not curable...yet. Even though we know that this one particular part of her foot has a cycle of about every four months. Until very recently, we never had all the resources & tools to effectively battle the situation in the best, and timely manner.
Our insurance offers us two very effective tools that we have not had in years. First being the opportunity to have a Podiatrist to see, and secondly transportation to and from any visit. Although we have to follow the 'chain of command' which means first seeing her GP, getting a 'stat' referral & authorization to see the Podiatrist, getting an appointment (Tuesday's only), then arranging transportation.
On our most recent visit, mainly because this Ulcer episode concerned us, we first learned it was NOT anywhere close to being as serious as we thought. Actually, I found out after the visit that both my Wife and I really thought we were going to end up at the Hospital. Instead, the Podiatrist not only assured us that it looked fine. 

Now we have to keep things in context here. "Fine" didn't mean there was not an issue. There was still a little open wound, ALL her lab work related to white blood cell counts were elevated, so there were still antibiotics she is taking. Infection & antibiotics affect Blood Glucose Levels so it becomes a multiple battlefront situation. Then something happened that was AMAZING...
The Doctor asked the NP to get another stool from another room for me. He then put the stool right next to him and told me to sit there. I was then given gloves and some very funky glasses with ultra high magnification. Doctor M then said "Watch what I do, how I do it, and listen VERY closely as you watch what I am about to do, because when we are done you will know EXACTLY what to do, and be able to do it at home.
What happens is over time, the foot naturally grows callous material especially in the one spot on the ball of the foot, under the big toe...kinda. When the callous becomes larger the body try's to fight this by pushing the callous out. Underneath the callous not visible to the eye initially is a little wound, so when the callous material is removed (by cutting it away), one can then take care of what remains of wound by covering and dressing it daily, until; eventually closes.
We left feeling ever so empowered and educated like never before. With the proper [preventive] maintenance & care, we not only can minimize what happens, but avoid the infection part and Doctor visit we usually have to go through.
So take *THAT* diabetes, we can now eliminate most all of the associated issues we normally have to face. The even better part...I can hopefully now pass along this bit of knowledge, and hopefully help others do the same. Even if that means I also now become an amateur Podiatrist...

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!!