Saturday, July 11, 2015

A Type 1 Story, Resources, and Tips

Hello friends!
We have had a busy summer of traveling and that presents extra blessings and challenges when you are the parent of a Type 1 Diabetic.  It still surprises me how misunderstood this autoimmune disease is, so I want to share some resources and tips to help educate and encourage those living with it or who want to be supportive to loved ones who have it.

Tips:
Get to a Camp!
I know people struggling to get their blood sugar levels under control and especially when someone is first diagnosed, I cannot say enough great things about the Diabetic Youth Foundation in California.  They host many activities, but we attended Camp Bearskin Meadows and it changed our lives  You learn extra tips and strategies for management that you just won't hear anywhere else. Check it out!   Diabetic Youth Foundation

Participate in a Study!
We have and still are in studies for Type 1 Diabetes.  Our son loves to participate because it helps him to feel like he is actively getting to be part of working toward a cure.  He is wearing some of the most advanced technology today that he actually got to be part of advancing through studies that he participated in at Stanford.  When people participate in studies, this helps advance technology and ultimately works toward a cure for Type 1 Diabetes.  That is our ultimate hope and prayer, but using the best technology available and really mastering how to get the best and highest use out of it really makes a difference every day.  Participating in studies helps offset some of the costs and gets you excellent care from the best doctors.

Sharing Technology!
Our son, Wyatt, uses a Medtronic 530G pump and Enlite Sensor.  These devices talk to each other and yes, he still does about 12 finger pokes a day (at $1 a pop that's a lot to just check blood sugar), but this technology allows us to see what his blood sugar is on the pump every minute.  The best feature is that it alarms if he is going "high" or "low" and will shut off giving insulin if he goes too low. These devices have to be monitored and still manually input for blood sugars and carbs, and while it's not a thinking pancreas, it IS an external tool that has two needle sites (that are typically changed out every 4-6 days) and with careful monitoring and management, allow tighter blood sugar control.  There are many different types of pumps and sensors, this is just the one we have chosen to use.  It also works great with the Sentry device which is a screen I have by my bed so I can see and hear any alarms he has overnight.  Technology is not a cure, but it helps until there is one.

What's the Deal with Blood Sugar Anyway?
In the simplest terms, Type 1 Diabetics do not have a pancreas that works to convert food to energy anymore.  Their pancreas stopped producing insulin and they almost died when they were diagnosed. Many, like our son, had a blood sugar of almost 900 and were going into a diabetic coma when they were diagnosed.  Some people have issues with their blood sugar going up or down, but it's not the same as Type 1 Diabetics.  They MUST have insulin given through either shot or pump doses, or their blood sugar will just continue to go higher and higher and destroy their organs, especially when blood sugars remain high over prolonged periods of time.  This is a life threatening condition because they run the risk of death every day, especially at night when they are sleeping, when their blood sugar tends to go very low.  If they are not given sugar to bring them up and some carbohydrates to sustain them, they will pass away.  This is especially tricky overnight, after extreme exercise which continues to lower blood sugar levels.

I want to share this in the simplest terms I can, because many have questions about Type 1 Diabetes and want to be supportive or share their ideas.  I have seen that many of the strongest people I know are Type 1 Diabetics and while some don't want you to recognize their struggle, it is very real and it is an exhausting, constant, autoimmune disease.  There is no cure, no magic drink, no special diet that fixes it.  Type 1 and Type 2 Diabetes are not the same and we will never stop working toward a cure, educating others, or striving to give our son the best life we can, living with this life threatening condition every day.  We have chosen a diet that combines a protein, slow carb, and fast carb to help keep his blood sugars stable, but if we are at a birthday party, yes, we let him have the cake and just give an appropriate insulin dose for it.  He is a kid and wants to be like everyone else!  It's okay!

We don't let Type 1 Diabetes keep us from doing anything, but have made some choices to improve our lives.  We noticed that climate made a difference and we needed to be in studies and have access to better doctors, so we moved. We noticed our son was sick every week at public school, so we decided to home school.  We have wrapped our business and personal lives around being available to help him because, we are his parents and want to give him the best chance at a healthy life.  Our son enjoys scouts, fishing, archery, swimming, farming, running, playing with his friends and family, reading, researching, doing service projects, playing piano, creating art, and more.  We just make sure to have his "go bag" with supplies and extra low blood sugar snacks which might include gummy snacks, juice, candy, or even a pop, with us at all times.  It is an interesting life I never thought I would be a part of, but I feel there is a reason God sent us our son and this challenge and we hope our story will help others.  We have made some wonderful friends through this journey over the past 7 years and have been blessed with awesome friends and family who have been a tremendous help.  Do finger pokes hurt and site changes hurt, yes.  Does he desensitize to the pain after thousands, yes, but it is the way he can live, so we choose to smile through the pain and do our best with this hour by hour, day by day.

Whatever you are going through, you are stronger than you know, you are exactly where you need to be, and there is a purpose for your pain.  When you embrace your life and your new reality, you can help others and I hope sharing our story will do that as well.  I am always up for answering questions and sharing any resources I can.  Type 1 Families, you are not forgotten and you are not alone.

Type 1 Strong!  :)

Hugs,
Trina
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