Wednesday, June 13, 2018

Diabetes Camp and the Camp Care Package



Repost of good information!!!  Still needing ideas for what to pack for your camper?  Here is a great way to avoid homesickness for BOTH parents and kids!!!!  






With one week in between school end and diabetes camp, I am now scrambling to put together two campers packing list.  Part of which includes the fun care package. 

First, start with a basic box.  You can use shoe boxes or recycle old UPS boxes.  I purchased two simple photo boxes from Michael's craft store.  Each cost just $3.99.  During a sale, the boxes are often as inexpensive as three for $5.00.  You can also find coupons for regularly priced items which discount around 40% off online.   

I try to choose colors that are more neutral now.  While my girls love pink, they both have recently changed out the look and feel of their bedrooms.  When camp is over, the boxes will stay in their rooms and be used to hold school papers, keepsakes and more.  Having a nice neutral color is a great way to blend decor.

At the same time that I purchased the boxes, I also picked up a few inexpensive packs of stickers to decorate each box with.  One rule of thumb for all items that go to camp is to make sure their is a label with the campers name.  Letter stickers work nicely for this. 

As I mentioned above, the boxes will stay in their room.  For this reason, I purposely am not going to decorate the label area.  When they come home, the girls will make labels to identify the contents.  Most likely, the boxes will hold other items after that. 

Next, the fun part...  gather up your goodies. This year, I chose items that appeal to older girls.  You can easily adapt this to suit your child (boys too!) with whatever items they find to be fun. 

Some ideas include: 


  • Outdoor toys like balls, Frisbees, discs.
  • Travel games, journals and comic books.
  • Sunblock, lip balm and hats.
  • Beach towels, string backpacks.
  • Tattoos, fingernail stickers, stuffed animals.
  • Or anything else that you choose!


Please NOTE:  Our camp does prohibit all food items - including gum, anything that looks like or is a weapon, nothing needing the use of matches, and no electronic devices.  This is not the time to give your child a cell phone to call home.  One of the best "perks" of camp is that your child is able to unplug and enjoy friendships in the wild outdoors.  Nothing is better than that. 

While this is fine to send, I generally avoid items that contain scent that may attract mosquitoes.  Therefore, no perfume, body spray or lotions. Deodorant and soap for the shower is a MUST!  The rest of the cabin will thank you!!! 

I try to select a few group oriented activities.  Should my child have a quiet moment back in the cabin, often, having a small toy to play with a buddy is a great way to ward off home-sickness.  The Cahootie catcher is a perfect example.  You can also send scrap paper and instructions with how to make these as a group activity too.  Directions are on Pinterest. 

Window markers are also fun and easy to clean up when the week is over.  Everyone in the cabin can take turns personalizing their cabin space.  This is stain-free fun too.  No damage to the cabin or the kids. 


Useful items work well too.  My youngest had her eyes on beautiful rhinestone studded swim goggles for weeks.  Without her knowing, I was able to pick up a pair for herself and for her sister's surprise box.  I know this will get used well beyond camp time and while it was a bit of splurge, it is also going to be well loved. 


Other silly and fun items for the group to enjoy include things like glow bracelets, glow necklaces, flower leis, bandannas, face paint or something like this hot pink temporary hair spray.  This can be used by all of the girls and will wash out in the lake at swimming time or in the showers before bed.  More fun for all. 

I also include postcards which are pre-addressed and stamped for mailing to home.  To make it even more fun, I added a silly crayola scented pen.  We also had some leftover party favors that included mini note-pads, perfect for playing tic-tac-toe or writing notes between bunk beds and also, two more pens to share with cabin mates. 

Nothing fancy or expensive, but a deck of cards is the ultimate camp toy.  The kids will play all sorts of games such as go fish, spoons, war, etc..  Everyone can join in on the fun too. 

At night, it is also nice to have a quiet toy.  This works for my youngest daughter especially.  She will smoosh and toss this little guy in her bed until she is ready for sleep.  It also works to have something to hold onto for site changes on her insulin pump.  Although at camp, she tends to be more brave and confident in her care.  It is camp magic! 

I do tuck in a love note from home and a few other goodies like nail polish and magazines.  A good book is also a favorite. 

Here is the completed box.  Next, I will wrap this up in plain brown paper and address to my daughter's name and cabin.  A special tip is that if you are going to the camp, you can drop this off at the office and avoid any postal fees.  Just be sure to add the day that you want it delivered.  I tend to ask for Tuesday as it seems like a great time in the middle of the camp experience (Sunday is drop off day for us) and I want the girls to be able to have time to use the items that I packed. 


Here is the finished product.  Just six more days until camp.  Now, to get busy on packing!


Happy diabetes camp week! 

Finals Week and Blood Glucose Monitoring

We all know that stress exacerbates hormones levels, which in turn, increases blood glucose.  Usually this is a temporary issue and often, as soon as the person is removed from the stressful situation, the blood sugar drops back in a typical range for that individual. 

But what do you do if you are faced with days of acute stress? 

If you live with T1D and are a student managing final exams, you find creative ways to cope. 

Because we are currently in the middle of this situation, my stress is ramped up enough that all I can muster is a top ten list of what is working (or working as well as can be said) for both of our girls. 

And yes, it is mid-June.  Why are we still in school?????  


Image result for take breaks



10.  Take breaks. Write this in BOLD LETTERS on your family message board.  It will serve well for the entire week.

9.  Hit something.  In our house, we head to the driving range for a bucket of balls.  If you have a baseball player, use the batting cage.  Karate kids, head to the dojo.  Soccer enthusiasts, go kick.

8.  Eat meals.  While it may be tempting to no longer make dinner, this helps no one.  Continue with meals that are a good combination of carbs, protein and fat to help reduce blood sugar spikes. Plus, meals force a much needed break.

7.  Be honest.  Acknowledge that this is a hard time for students.  Empathy reduces stress. 

6.  Share.  It may have been a pretty easy year for diabetes and some teachers may have forgotten that your child is managing not only exams but a chronic illness.  If blood sugars are out of range and testing is not possible, let your child's teacher know ahead of time.  Sometimes, a simple solution can be found with testing at a different time of day.  

5.  Run.  Along the lines of #9, running is the fastest way to tire out our muscle groups.  When anxiety and stress are peaking, taking a quick run will often reduce symptoms and return BG back to a typical range faster than any other method. 

4.  Write it out.  When your child feels overwhelmed with the demands, have them write out a schedule of what needs to be studied and when tests will occur.  Seeing it on paper, often reduces the feeling of being out of control. 

3. Study together.  Whether your child studies with friends, siblings or parents, having a human connection along with the material, helps through understanding that they are not alone in the sea of exams.  

2. De-emphasize grades.  One sure fire way to reduce stress is through communicating that the goal is NOT a grade but instead, mastery of concept.  If a student knows the material, they will naturally do better and as a result, the grade will become a fringe benefit. 

1. Exams end.  This time will not last forever.  Exams start and finish.  And with final exams, comes along the knowledge that summer vacation is right around the corner.  


Enjoy your summer!!!!  


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:  https://www.abp.org/foundation/roadmap

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. 

Food:
Anything with carbohydrates.
Anything with fat.
Anything with protein. 
Water.

Exercise:
Anything that you do aerobically.
Anything that you do sedentary.

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

Other:
Growth.
Sickness.
Minor Surgeries.
Major Surgeries.
Menstruation.
Sexual Activity.
Pregnancy.
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?

Visit Myglu.org
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: 

https://myglu.org/articles/we-used-mini-doses-of-glucagon-because-of-a-stomach-virus

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

Hugs!!

NaturallySweetSisters

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! 





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!