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!



Monday, April 30, 2018

Prom Dresses and Insulin Pumps - They DO go together

Image result for prom clipart 2018

Tubed, patch, and MDI, are all choices within #T1D world. While there may be strong opinions about what works best but the truth of the matter is #YDMMV (Your Diabetes Mileage May Vary - as my good pal, Bennet @BadShoe often says).  This means that whatever you choose, for that moment, is what works best!

However, that doesn't take away the honest concern of how those special days will be for our loved ones living with T1d. 

Will wearing an insulin pump detract from their moment?

Will there be room to carry supplies?

Will it be limiting to choose specific styles?

And for the love of all things fashion.... what if there are no pockets??????

This past weekend marked our very first prom.  And I can share that no, her insulin pump did not detract from her dress, there was plenty of room for supplies - AND low blood sugar foods, not to mention that she wore the perfect dress and it definitely did not have pockets.

Best of all... none of those questions or answers, overshadowed the beautiful evening. 

More importantly, she danced, she laughed and she made memories for a lifetime.  Prom was exactly the way it should be as a milestone of high school for teenagers. 

So how did we do it?  Here are a few random tips for ensuring prom is perfect. 

1.)  Dress shop for the dress that you and your teen like best.  Try not to think about T1D but instead focus on the moment at hand and enjoying the anticipation and excitement of the big night.

2.)  While you are out shopping, stop by your favorite athletic store (we chose Nike) to select a pair of fitted, spandex volleyball or yoga style shorts.  We tend to wear these types of shorts under almost all of our skirts and dresses anyway.  It is more comfortable and allows a bit more freedom against accidental fashion faux pas.  The added bonus to wearing these is that the pump fits securely in the front or side of the shorts.  Just clip inward towards your body and the pump virtually disappears as the spandex material smoothly covers it.

3.) Speaking of shopping, this is a great time to grab a clutch.  Look for something sparkly to match the style of the dress but also, check out the size of the bag.  We have been known to remove blood sugar meter supplies from the usual case to loosely place inside of the formal wear clutch.  This saves room and allows for low bg items to be added, all while still looking fashionable and trendy.  Not to mention, that it is important for carrying a driver's license, debit card and a small amount of emergency cash.  Oh and lipstick.  You know, the important things! 

4.)  On the last site change prior to the dance, placement is everything.  We try to rotate to flank, tummy or buttock.  Placement will depend on the fabric of the dress and usually by then, we have an idea of how sheer, thick or beaded the covered area will be.  It also helps to keep these site locations in mind as we know the length of the tubing and the intended location of shorts.  If you are using Omni-Pod, this isn't a concern, but it is helpful to remember infusion site rotation. 

5.)  If you have a friend with extra pocket space, it is also a good idea to share low treats.  Often, our daughters tag friends wearing sports coats and ask if they could hold a roll of glucose tabs.  They have great buddies and to this day, everyone has been very agreeable.  It has come in handy when on the dance floor.  A couple of glucose tabs and lows immediately avoided. 

Most of all, I hope you enjoy the night.  This is a special time for everyone and it is nice to see T1d taking a back seat.  I just wish all events could involve glittery dress up!