Thursday, May 24, 2018

The RoadMap Project

HomeThe Roadmap Project

Today, I have the pleasure of sharing a very heart-felt collaborative initiative called The RoadMap  Project. 

The RoadMap, a tool for creating meaningful dialogue and offering helpful resources for mental health wellness, was lovingly created in partnership with the American Board of Pediatrics Foundation and a team of many wonderful parent/family advocates and medical providers. I was lucky enough to be on this team and see first hand, the caring and commitment that was brought forth.

To meet a few of our passionate stakeholders, please watch this video.  While it was filmed, there was not a dry eye in the house, but there was something even greater... HOPE.  By creating a RoadMap, we hope to create a generation of patient-centered care that balances all facets of health. This launch is only the beginning of even more to come.

As a patient/parent advisor, my role over the years has been to support my children in all of their well care.  This means not only our pediatric endocrinology appointments, but also, to ensure that they have learned the skills and have the resources to keep mind, body and soul healthy and well. I often say that it takes a village to raise a child, but even more so under the demand of chronic care.  Having a Roadmap will help to ensure that all of our families receive the care that they need. 

I can't be more proud of this project! 

Please take a moment to visit our RoadMap website and to share with friends and family.  We also encourage you to share this link with your own medical providers to help them begin the conversation to ensure that you are getting the best healthcare available. 

You may also cut and paste to share:

Let's keep the conversation going. 

Hugs -
The Naturally Sweet Sisters!

#RoadMap #NaturallySweetSisters #ABP #Foundation #MentalHealth #Wellness #Pediatrics

Monday, May 7, 2018

A Shareable Post: Fantasy Vs. Reality

I spend quite a bit of time talking to families and sharing experiences, insight and learning towards caring for our loved ones living with T1D.  To me, this is a silver lining of our own dx, as our #Diabetes community is truly one of the kindest, most talented and definitely, the coolest group of people that I have ever been blessed to know.

However, if there is one common thread to much of the discussion, it is the difficulty in educating our caring friends and family - the ones without T1D in the home - about the many invisible and often, complicated and frustrating facets of daily life with T1D.

Let me dive right in and say that we, as families with T1D in our homes, are in complete agreement. 

T1D is difficult to understand, to manage and to live with. 

First, a quick overview of T1D:  

  • When people are dx with T1D, the pancreas does not make enough insulin. This makes it impossible to get the blood sugar into the body's cells to be used for energy.  Without insulin, the blood sugar will continue to rise to a dangerously high level.  This is called hyperglycemia.

  • When sugar rises too greatly, water will be pulled from the body in an effort to reduce the increased blood sugar.  Without insulin, this can result in dehydration leading to Diabetic Keto-Acidosis (DKA), a life-threatening condition. 

  • Conversely, if there is an over production of insulin (or too much injected insulin), the blood sugars may rapidly fall to a life-threatening level.  Without sugar or a releasing of the insulin stores within the liver through an injection of glucagon, a person with feel sick, possible have seizures or if left unchecked, may die. This is called hypoglycemia.  

  • Thus, there is a wide range of care needs for patients and caregivers to stay above their hypoglycemia threshold and below their hyperglycemia peak.  This is the "In-Range" area that is extremely difficult to manage.  With a working pancreas, it is no big deal.  You may feel hungry and simply eat.  Or you may feel thirsty and have a drink of water.  The risk of having hyperglycemia or hypoglycemia is diminished to a statistical non relevance and you can simply enjoy your day.   

This is not the case for families with T1D.  As a family with T1D, we must accept that there is no perfect.  Within T1D, there are many factors that figure into the ongoing mathematical equation that floats through the existence of every single day.  In short, we calculate a prediction based on our known factors and then, inject the appropriate amount of insulin.

To understand the factors that influence blood sugars (in both directions), here is a list. 

Anything with carbohydrates.
Anything with fat.
Anything with protein. 

Anything that you do aerobically.
Anything that you do sedentary.

Anything that makes you happy.
Anything that makes you stressed.
Anything that makes you mad.
Anything that makes you sad.

Minor Surgeries.
Major Surgeries.
Sexual Activity.
Broken Bones.
Dentistry Needs.
Other autoimmune dx.
Any kind of hormone fluctuation.

Understanding this list, one can then begin to acknowledge that there is simply no perfect.  While a family living with T1D can understand the tangible factors such as food and water, it is scientifically impossible to know the effect of activity, hormones or illness. 

To complicate matters even further, it is important to clarify that every single person living with T1D is unique to their own care needs and to how their body will react to any situation.  Age and stage of T1D care, is also another large factor that changes the way T1D will be for each person dx.

The most frustrating and oft medical literature saying is "This is an Art, not a Science". 

Which is also equally important to be reminded of because the reality is that science has not yet discovered the reasons for the pancreas' beta cell demise.  There are theories but no scientific proof of why this occurs, how to stop the auto-immune response or my most hopeful, how to reverse the damage and bring about a cure.

Until there is better science, families rely on their own knowledge of T1D, the support of their medical providers and the rudimentary tools that require heavy user intervention such as a syringe, a pen, an insulin pump and even calibrating a Continuous Glucose Monitor.  None of these devices work without human intelligence and while that may be a negative factor towards blood sugar management, it is also another safe-guard as medical devices can not predict or understand fully of the impact that a day of swimming, playing and a barbecue might have on a child.  Without our human intuition and 'SUPER WILD ASS GUESS' (SWAG), we may have more hospitalizations or worse.

Ultimately, as a friend or family member not living in the home of a person dx with T1D, this is YOUR ONLY ROLE:

Love your person living with T1D.

That means, not to judge, not to tell them they are wrong, or bad, or that you could do it better.  Not to insinuate that there will be complications or that they deserved it or that karma is at play.  Not to scold, not to punish, not to belittle. Not to pass along natural cures or miracle foods.  Not to share sad stories or to say it could be worse.  Not to undermine or second guess decisions. 

If you are blessed to be a part of their world, than the best thing you can to do is to be there with a hug, maybe a few pieces of candy (if they need it) and to see them for exactly who they are - your friend or family member.  

(feel free to leave off the living with diabetes).

Tuesday, May 1, 2018

Do You Know How to Use Mini-Glucagon?

I wrote this as patient advocate for the T1D Exchange as sometimes, even in this modern world of information exchange, useful #T1D tools are not shared.  My hope is that this encourages the dialogue between provider and patient in order to understand all of the available care possibilities for 'Sick Day' guidelines. 

Click HERE to read all about Mini-Glucagon in real life or copy and paste this link:

Best of all, learn how we stayed hospital free since dx.  I do think having tools has helped!