Thursday, April 19, 2018

NEW for 2018! Diabetemoji by HealthDesignBY.us


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If sharing is caring, than we have an app to make your pancreas happy!  



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New for 2018 - The Diabetemoji App is available starting TODAY!  






Updated with FRESH designs, BRIGHT colors, COOL Diabetemojis!  Everyone will love sharing a 1000 words in just ONE PICTURE!!!




Save time!

Save money!

Save having to repeat annoying diabetes commentary!  -- This is a personal favorite of the Naturally Sweet Sisters!!!  

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And the best news?  It is NEW!!!

Download today!  https://www.healthdesignby.us/diabetemoji

We hope you love this new edition!  Stop by and share your feedback @natsweetsisters on Twitter, or NaturallySweetSisters on Facebook.  Your comments help us make this the best diabetes app out there.  We are so grateful!

Thank you!!!




#diabetes
#emoticons
#diabetemoticons
#diabetemoji
#thisisdiabetes



Tuesday, April 17, 2018

Crashing Low - A Teen Perspective



I recently read a blog account of what a low blood sugar felt like for an adult friend of mine living with T1D.  I won't pretend that it didn't bother me, because it did.  It's a sad reality of what our loved ones deal with. It also reminded me that it had been a while since I asked the girls how they really felt.  If I want to practice sharing empathy and compassion throughout our medical community, then, sometimes, I have to ask the hard questions, even when the answers break my heart.

As we veterans know, parenting with or without T1D is never easy.  

So I sat down with my youngest daughter and I asked her to tell me exactly how she felt during a low blood sugar.  These are her words without edit.  


I don't always notice the low until later.  

First, I feel sweaty.  I feel my chest warming and at the same time, begin to feel tired.

I can't hear as well and there is a blurry sound.

I can think but everything is distracting. It's hard to concentrate.  My thoughts feel interrupted.

I feel really weak.

Sometimes, I feel cold and sweaty.  Sometimes, I feel hot and sweaty.  

My body feels lumpy and it's hard to make my muscles work.

I know that I need to eat.  I hate that I need to eat.  It feels like I just came off a roller coaster and my stomach doesn't always want to cooperate.  I feel desperate.

I think I look fine to other people but on the inside, I feel like my body is destroying itself. 

If it is really low, I feel panic. I hear ringing and buzzing in my brain.  

It takes me as long as it took me to drop to feel back up.  Sometimes it is minutes and sometimes, I do not feel good for an hour. 

I feel depleted after.  Sometimes, I just want to sleep until my body feels good again. 



I asked her how she felt to have me there and this is what she said.


I feel safer with you.  

Sometimes, I feel angry because I want to sleep.  I think about that later and I know that you are keeping me safe.  

I dislike that you stare at me.  I don't like that anyone stares at me when I am coming up.  I feel weak and..... (I inserted 'vulnerable' and she agreed). 

I don't like that you give me too much food.  It's awful to have to eat and I never feel that good.  I know why you do it but I don't like it. 

I am always grateful that you are there, even if I seem not to be.  It can be scary.  





#ThisisDiabetes
#CureT1D


Thursday, April 12, 2018

Things I Want You To Know About Living With Type 1 Diabetes

My best ideas often come from places where I am completely shrouded in silence... like that alone time in the car or during my morning shower. As I zone out the rest of the world (not entirely while driving - don't worry, you are safe with me on the road), I contemplate how darn lucky we have been, as a family, within our support of T1D. After all, it does take a village to raise children, and even more so, children living with T1D. 

This acknowledgement led to thinking about what I wish I had known to tell everyone all of those years ago during our initial diagnosis. So from my silence-induced mental ramblings, here is one of my favorite top 5 lists of all-time. 

1.) See my children. After diagnosis shock has worn off, I hope that you understand that my children are still the same curious, bright, happy and engaged kids that they were a week ago. Type 1 Diabetes does not diminish their spirits, hopes or dreams. It only requires a bit of daily insulin therapy. 

2.) Recognize that they are rapidly becoming experts in their own care. As adults we often think that only we know best. The truth of the matter is that children living with chronic care needs are more well-versed within their T1D care than most providers, teachers, coaches, friends and loved-ones.  As a community support, we should be respectful of their needs and not question whether 'they can eat that' or 'do this' or 'be that'.  Support means listening, encouraging and celebrating their T1D journey.

3.) Let go of your personal bias.  This is hard for most everyone, me included.  However after our 12 years of post diagnosis, I have learned that it is possible.  People that once said they were afraid of blood/needles, or repeated sad stories of long lost relatives, or were concerned of contagiousness, now understand that T1D management is less about the horrors of medical care but more about the necessity of good health. We can shift paradigms but only if we agree to let go of what we think we know.

4.) Cheer for the kids.  Cheer for all of them and often.  Young people are living with many invisible layers of complexity from food scarcity, to insecure homes, to medical concerns like Type 1 Diabetes, and this is just to name a few of the very 'adult' issues that are happening.  I love cheering for the quarterback just as much as I do for the child that quietly draws.  When my girls were little, we made it a point to celebrate their success but to also point out peers that were accomplishing their own goals.  To this day, I firmly believe that this generation will be changing the course of our world by simple improvements.  All kids deserve our encouragement because everyone has something.

5.) Childhood is short.  With so many necessary T1D tasks, I never wanted to lose sight of the magic of being a kid.  Encourage your loved ones living with T1D to try out for the sports team, sing loudly, be silly and stay up too late.  Eat the chocolate.  Be a little naughty.  Go to overnight camp and have FUN! Until there is a cure, there is a life waiting to be lived and no one should waste a second of it.  When you interact with my girls, remember that they may sound like well-versed adults, they are still kids.  Enjoy them.  Have fun with them and be amazed by all that they do.  However, most of all, recognize that they are light-hearted goofballs that just happen to wear an insulin pump and still believe that life IS good.

Merry April - and may there be no more SNOW where you live!












#ThisisDiabetes
#ADA
#JDRF
#Cure
#InsulinforAll




Thursday, April 5, 2018

Teenaged Diabetes Ramblings for Newbies

The girls are continuing to do well with school, activities, work and T1D.  Nothing seems to slow them down.  In general, life is very good and they are living their lives just like any of their peers. They often stay up too late, rather hang out with friends than do homework and love to shop for new clothes.  They also work hard, get good grades and help us around the house.  It's not always perfect but we have a lot of love for these two young people and feel grateful for each moment. 

I think that is something that I always wondered about... what would the teen years be like? 

And most importantly, would our daughters be happy?

The answer... YES!  Yes, they are happy, joyful and sometimes, a bit too spunky!  They are just the way that you would imagine in any other family.  T1D is not overshadowing their joy in the slightest.

I say this to continue to reassure the new families that dealing with a first-time diagnosis.  It may be very overwhelming with learning, coping and managing T1D.  I guarantee though, that in just a few short weeks, life will resume a new normal.  In a few months, you will begin to adjust almost seamlessly and in a few years, you might even forget what it was like before T1D entered the picture.

It gets better, it really does. 

Keep finding your joy!

Hugs,
Naturally Sweet Sisters

PS... Proud mama alert... find the NSS oldest in this article (quote).  She is wise beyond her 16 years! 

http://diabetesstopshere.org/2018/04/05/thisisdiabetes-on-capitol-hill-2018-call-to-congress-recap/









#ADA #C2C018 #ThisisDiabetes

Tuesday, March 27, 2018

ADA Call to Congress 2018



A few days ago, our oldest daughter and I had the pleasure of attending the American Diabetes Association 'Call to Congress', held in Washington, D.C..  And wow!  What a wonderful opportunity it was to speak, share and to listen to over 200 other advocates as they told their own personal stories of living with diabetes.

There are these amazing moments in our lives in which suddenly you realize that you have an ability to communicate not just for yourselves but for the greater world at large.  This was one of those moments. 

As we walked into a meeting with Congressman Mike Bishop, 8th District, of the state of Michigan, I could sense an exciting chance to help further teach what we as patients and families live with through having been diagnosed with T1d.  While we have learned much on our journey and do our best to maintain health, there is nothing more that we would like to have than a CURE.  With this in mind, our meeting started and in a few moments, I watched as my daughter calmly begin to speak. 

This is what she shared:

"Diabetes is a disease that goes with me wherever I go. It is something that I can't ignore or take a day off from.  By looking at me, you might not realize that I am a person living with diabetes.  You would also not know that my little sister and many of my friends have diabetes.  It is truly an invisible disease.  It also does not discriminate and anyone, at anytime, can be diagnosed.  I have watched my friend become diagnosed and I have had to be the support system for them.  This is something that no one has asked for and something that no one deserves.  This chronic and life-threatening disease needs a cure.  That is exactly why research funding is so very important".




Then, she casually pulled out her blood sugar meter and begin the process of checking her glucose.  Congressman Bishop spotted the attached car key and questioned why the two were paired together.  Our daughter explained that when she drives, she must check her blood sugar.  This was a surprise as it was not widely understood that checking happens beyond mealtimes, but also, during sports, activities, parties, holidays, at night and well, even at a Congressman's office. 

The story she shared wasn't overly dramatic but it was honest and authentic.  Checking glucose happens every day, multiple times throughout a day.  It has become such a routine event that we rarely think about the process but in this setting, watching a pretty, well-spoken, young person calmly use a needle lancing device on their finger, only then to squeeze out a blood droplet, felt barbaric.  Even when she correlated the data to her technologically advance Continuous Glucose Monitor (CGM), it still felt like not enough in terms of progress had been made.  There should be more (and better) diabetes treatments.  Where are the implantable sensors?  The true artificial, fully automated pancreas? Research is only as good as the funding it is provided. 

Within the room, there was an empathetic silence in understanding that life with diabetes is difficult.  As she finished speaking, smiling through her testimonial, the reality became even clearer; people living with diabetes need better. Each head around the table nodded in support of improving care and helping our patients and families.  Yes, we can do this! We can make change.

When the meeting ended, we shared our thank you's and exchanged our good-bye's for the time being.  There is more work yet to be done and we will carry on with hope that we are continued to be heard.  You can join our advocacy efforts by attending your own home-town meetings and through sharing your story.  I would love to hear back on your involvement.


Thursday, March 8, 2018

GET INVOLVED - TWO RESEARCH STUDIES

Hi Patients, Families and Friends - 

Just a quick note to share that there are TWO exciting research opportunities through Nemours.  You do NOT need to be a patient or live in the area because these are both fun ONLINE opportunities.  Read more below for qualifying details and please, feel free to SHARE this post to help us fill up their research study so we can improve T1D care for all!!!

Research is the magic medicine of helping to improve care while also feeling EMPOWERED by sharing and bettering our T1D community.  I attest much of the positivism within our family to rolling up our sleeves and giving back in ways that create tangible change and better outcomes for everyone living with T1D.  

If there is just one thing you do, try participating in research - you won't regret it and the payback will be worth every second.  

Best wishes and thank you!

Naturally Sweet Sisters






Research Study #1  Click HERE for details or type in your browser http://bit.ly/TCT1D.





Research Study #2 Click HERE to learn more or type in your browser http://bit.ly/youngT1D

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Tuesday, February 27, 2018

Treatment Number 2

Last night, our youngest completed treatment number 2 towards her Chronic Urticaria.  Overall, it seemed to be a smoother process.  She knew what to expect in terms of the injections and because of that, her pain tolerance was higher.  There was still discussion about the Xolair feeling 'thick' and 'Gooey', however, once done, she moved into the recovery room without any grumbles.

And now we wait.

This is what is hard.  I so badly want to test her reaction and see if there is an improved tolerance to the sun.  Yet, from our much hyped first visit, when we did that, nothing changed.  She still had hives the second the sun touched her arms and face.  It was a bit defeating and definitely disappointing.

So we wait.  And see if there is improvement as it naturally may occur. 

Thank you for the continued well wishes, support and prayers.  We are hopeful, always. 


Tuesday, January 23, 2018

January came and then, it left.. but did it take the Solar Urticaria with it?

Urticaria is real.  

Finding treatment is hard.  

For months, I have been struggling to get our youngest daughter help.  First, I had to find out what was causing the hives.  Since she is allergic to the sun, it was fairly easy to deduce that every single UV ray encounter was causing an allergic reaction on her exposed skin.

Then, I had to record it.  How do you show a doctor what it is when you are sitting in a semi-dark, windowless patient room?

And of course, I had to find the right doctor which turned out to be a pediatric specialist that understood solar urticaria and could prescribe relief.

However, with all of the wonderful modern medicines available, we were forced to try combinations of multiple and various pills.  The effects were lethargy, drowsiness, irritability, and oh my favorite... DID NOT WORK.

Not one.  Not some.  Not ALL.  Nothing worked.

In the meantime, I have spent months researching, talking and finally begging to try something that is working for many patients.  Xolair. 

Xolair is an injection that is FDA approved for asthma patients.  However, when those asthma patients suffered from urticaria, the injections were shown to effectively treat and put hive outbreaks into remission.  

Thanks to a beautiful soul that reads Naturally Sweet Sisters, she reached out and shared the story of her son and how Xolair treated his urticaria almost immediately.  After hearing that, I was beyond excited but to get to our ability to try it, we first had to build a health history of the ineffectiveness of meds.  

Why?  Because they are cheap and insurance has a better likelihood of approving higher tier, off label drugs only when there is a documented history of ineffectiveness.

For patients like my daughter, this provides a low class of life.  She has been inhibited in everything that she enjoys doing. Being anywhere near the sun can and does cause a reaction. For example, she routinely has hives from the sun shining in the car on the way to and from school. Walking around the neighborhood, even in the winter, cause bright welts to appear on her cheeks - which are the only exposed part of her entire body.  She is often teased at school and has had to switch seats to less sunnier ones.  One day, during sub zero temps, I caught a sunray in our front window.  Opening my eyes, I could see her longing to soak up the warmth but couldn't bare the reaction of bubbled, red and burning, then itching marks.  She instead, turned and walked away.  Once she was gone, I closed the shades because it simply isn't fair for her.

A few weeks ago, I scheduled yet another follow-up and determined for better, I marched into the appointment like a mama bear.  And thankfully, sparing me the need to further demonstrate our requirement for better treatments, the provider instead talked to our youngest daughter about how she felt.  Listening to her, I started to cry and that promptly embarrassed our youngest and also, promptly started the route to approval for Xolair.  

We were required to order epi pens and to agree to each $3,000 shot out of pocket cost, but only if insurance did not cover or if we were unable to make the appointment.  

The protocol is two shots per session. It will require a 30 minute window for mixing (not that it should take that long, but it gives the nurses time to prep and fit us in) and then, once the shot is injected, we are required to stay in-patient until it is determined that there are no asthmatic or allergic/reactions or symptoms.   

Today, she was finally approved through a pre-authorization from our provider to insurance and will be covered at 100%.  

We aren't sure how many sessions will be needed but as I spoke to the nurse today, she was delighted to share that some children experience relief even in one to two days.  

1 or 2 days?  

Why would we have such a messed up system that has caused my child to struggle for almost a year?  This is why we need better.  

I'll keep you posted on the first shot next week.  Stay tuned and wish us luck!