Twins Always Take Care of Each Other!

Monday, May 27, 2013

Type Awesome

Today I write about our daughter that does not have type 1 diabetes. You know, I absolutely recognize that it must be difficult to be a child that is a sibling of a T1D. A twin no less. As much as we strive to maintain normalcy in our home, T1D lives here and there is no getting around that. We can't ignore it. We can't wish it away (although we try every day!)

So, in the diabetes community they have what they call "type awesome" and this is what is referred to as  people who support those living with T1D. I have to say again, I love the diabetes online community (or the "DOC"), they have come up with the most amazing terms. Type Awesome is a perfect example. 


S.W.A.G. bolusing is another - want to take a guess at what that means?? Well for those of you what are not familiar with diabetes jargon to begin with, a bolus is a dose of insulin to cover a high blood glucose reading or a meal/snack intake of carbs. S.W.A.G. bolusing is "Scientifically Wild A$$ Guessing" on the number of carbs you have to bolus for - imagine when you sit down at a party and have a piece of cake, do you think you could GUESS the number of carbs in that piece of cake?! Or how about when you go to the new and trendy froyo joint and make a big frozen yogurt treat with a bunch of toppings... you won't find the carbs for that in any book! So you S.W.A.G. and hope you get it right (or close) and if you don't, you fix it later!

Want to venture a guess on how many carbs are in the bowl to the left?? LOL!


ANYWAY...

Getting back to my point, we can't even go for ice cream (or frozen yogurt) without the big D jumping in the car for a tag-a-long so while I believe that both of my girls are very well adjusted, I think that sometimes my other daughter might feel a little left out. 

SOOO, I decided to introduce her to her "type" and she immediately jumped on board! She even found something to clip onto her pants to wear around as "her version" of a CGM (which is ultimately just a small stuffed Disney character on a clip) but hey, it is making her far more satisfied with her place in this arrangement. Not only does she have a name (a type) but it is an AWESOME type and she thinks it is cool (and so do I)!

I want to point out that I am very sensitive to equality in this family. Given that they are twins, I have gone out of my way to pay attention to how both girls feel and I think I have created a fair balance. Given that our T1D is on an insulin pump and a Continuous Blood Glucose monitor, we are certainly able to allow much more freedom in our lifestyle and eating habits than we did when we were on MDI (multiple daily injections). My daughter has a fantastic A1C, one that her physician is very pleased with and so am I. So, this allows me to make food choices and decisions because I am a mom, not because of diabetes. 




I think that my Type Awesome daughter is a pretty fantastic person. At this young of an age to be so responsible and caring of others, speaks to her character. T1D certainly changes a family. Not that any of us ask for it or want it, but it certainly makes us stronger. I look at both of my girls and I am so proud of them and who they are already at the age of seven, so mature and strong. I can only hope they will grow up realizing how AWESOME they both are. 

Thank you for reading! 


Tuesday, May 21, 2013

Great Support!

Last night we hosted our monthly support group meeting. Berks T1D Connection.

We were again met with a full room after starting only a few months ago :-) Very exciting!
The Type 1 Diabetes community is just so welcoming, friendly, and very excited to spend time together!

In addition to sharing and discussing our monthly topic, we were able to discuss our plans as a group. As an organization. We have some pretty exciting plans!



Our website should launch any day now! Keep your eyes open for that announcement!
In the meantime...



We were able to launch our Facebook page!




We were able to launch our Pinterest site! 


We were able to launch our Twitter site! 

Thank you for your support and please share this post and our Facebook, 
Twitter and Pinterest information! 
Our goal is to increase diabetes awareness and we need your help! 

Sunday, May 19, 2013

Spread the Love Sunday

Well, as BLOG WEEK comes to a close, I reflect on how much I have enjoyed the experience. When I initially considered signing up I thought to myself that this would be difficult to have something to say every day, but then I realized, "come on, when have I ever found it difficult to blab on about anything?!" And well, this blog is just a great outlet for my talkiness (oh yes, I am making that word up and it totally applies!) So, thanks for sticking with me and riding out blog week and learning more about type 1 diabetes and what life is like once T1D decides to come live in your home. 

Today's topic is "spread the love Sunday" and I am sharing three blogs from others that I have really enjoyed reading this week. 

First up: The Sagwabetes post on Memories - CLICK HERE to read her post. She shared her her experience in a dorm room with a low. Feeling alone. Feeling scared. The inability to recover from that experience. I can tell you as a mom of a type 1 diabetic, this is a fear for us all. My heart pounded as I read this post. Because although my little T1D is only 7-years-old, I already fear what happens the day she leaves "the nest." My only hope is that we will have a fantastic new form of treatment like the artificial pancreas (or better yet, a cure) by then!

My second post I really enjoyed was Karen's Bitter-Sweet Blog about accomplishments - CLICK HERE to read her post. It is really inspiring to hear how far she has come and gives me hope because in a lot of ways I feel like even though we are 4 years into our D-journey, we have a lot of exciting new things happening in our life (I just started blogging 3 months ago, we are starting a non-profit organization in our community to help local D-families, etc.) It is amazing the impact you can have on a large scale and Karen is living it. Thank you Karen for all you do for the diabetes community! Thank you for bringing us all together for blog week! 

And I have to say my last post that I want to recognize was from Monday's Share or Not to Share topic - CLICK HERE to see Hannah's feelings of being diagnosed. I really appreciated reading the young person's perspective and I applaud all of the young bloggers for taking the initiative for taking the effort.  Being the parent of a T1D gives me a far different perspective and I am always interested to hear the story from the other side. 

The bottom line is D-Blog week was an amazing experience and I thank Karen Graffeo for coordinating this amazing event. So many fantastic diabetic families. It was impossible to choose only three to spread the love - I loved them all. The diabetes community is truly special. A community I wish I was never a part of but proud to be a part of all at the same time. This community has become family and we all stand together and HOPE FOR A CURE!


Saturday, May 18, 2013

Diabetes Art

OK - I know I have posted these two before but they are so AWESOME they get highlighted again because today's BLOG WEEK topic is diabetes art! 





These are original works of art by my special little diabetic. 

The above was completed in 2012 when she was only in kindergarten. The right was completed in 2013 when she was in 1st grade. (And yes, her AWESOME art teacher assisted with the project)

Both were completed to auction at our local JDRF gala to raise money for diabetes research. The total raised from both is nearly $1000!


 ...and enjoy a pretty flower for spring!

Friday, May 17, 2013

Dream Diabetes Device

YAAAAH! It is Friday! I mean, Friday is good no matter what, right?!
But it is Blog Week Friday and I have to admit, I was a little nervous. So, I hope everyone has enjoyed reading so far - but don't go anywhere, it is not over yet!

HAPPY FRIDAY!!!! Today's I am going to run with one of the wild card topics of BLOG WEEK. A dream diabetes device. Now, I absolutely believe this has been "blogged" about by other D-bloggers. But for my readers that have not read those blogs - MY fantasy diabetes device would, in fact, be a carb counting device. Tie that sucker right into my smart phone so that all I have to do is take a picture of the food and BAM! This fantastic app will magically tell me the carb content of the food my daughter is about to consume so I can accurately bolus her insulin! 

WOW! Could you even imagine?? I would totally eliminate the pre-meal stress at restaurants or the melting ice cream on a hot boardwalk while I stare at the dish and WONDER how many darn carbs are hiding in there!

That being said, I think the artificial (or bionic) pancreas is a pretty darn dreamy too! In this case, we wouldn't even need a carb counter! We wouldn't even CARE how many carbs are in that ice cream! For those of you reading that may be new to what the artificial pancreas is, take a moment to watch this brief video! Artificial Pancreas Video

We would REALLY enjoy a better way to test blood glucose levels as well. While I am making a wish list, why not shoot for the stars, right? I know there are some companies out there working on this so we have our fingers crossed that something makes it to the market soon! Something! Anything other than sticking these poor little fingers 5-10 times per day and drawing blood. 

These are not "new" wishes. Every diabetic family wishes for these things. Totally wish for a working pancreas. That would be the BEST! But if we can't have that one yet, I guess we will settle for some of this pretty cool technology. 

Thursday, May 16, 2013

Accomplishments Big & Small

Welcome to BLOG WEEK Thursday!
Today we write about accomplishments (big or small).

Today I write about the small and mundane. Because I feel that the insulin pump really deserves all of the credit. The pump and the continuous blood glucose monitor (CGM)...and my little diabetic of course! My job is to, hmmm, let's see, what word am I looking for? Facilitate. I wish I could do more, but I am just the project manager on this assignment and I am going to organize and work the heck out of every last detail. 

I am a fairly organized person by nature (my husband would tell you that is an understatement). But that does NOT mean I am a numbers person. So, when I realized all of the calculations that Type 1 Diabetes required, my heart skipped a beat. I knew that a calculator would be a MUST in my life from that moment on - and it is (thank heavens smart phones have calculators so I don't have to carry one more thing with me!)

I guess you could say one accomplishment would be making it this far. Surviving. Life is pretty easy breezy now with this  technology keeping us on our toes. But honestly, the biggest accomplishment would have been making it through those years WITHOUT the pump and CGM! MAN did we see some bad numbers back then! 

But all of this time I have definitely found it challenging to GUESS the carbs that are in restaurant food. (From what I understand this even has an "official" term in the diabetes world - this is SWAG bolusing. Or "Scientifically Wild Ass Guessing the carbs in the food for a meal time bolus! Have I mentioned how much I absolutely LOVE the "diabetes online community"?! I mean, how awesome is that?!) I guess after a while you get "better" at it, but I am, by no means, a nutrition expert. I get it wrong PLENTY, but I have gotten, you know, pretty OK at making that educated GUESS at the restaurant food. I guess that could be an accomplishment :-)

At the end of the day I would say I am happy of how far we have come in these four years. These little accomplishments have added up to one strong and mentally secure 7-year-old type 1 diabetic and I could not be more proud of that. 

A "LARGER" accomplishment I would say I am excited about is - we have decided we want to help more people in our community so we have begun a non-profit organization to help the T1Ds in our area. We would like to raise awareness about the disease and help families connect for support and information. Please check out and LIKE our facebook page! Berks T1D Connection! We have a website under construction. We have monthly support group meetings (which is something I am particularly proud of because we are reaching so many awesome T1D families in our community and there was previously NO support of any kind for the T1D community here in our area). We have a lot of really exciting plans and we are looking forward to making a positive impact on the T1D community :-)

Thanks for reading and please feel free to share!

Wednesday, May 15, 2013

Memories

Ahhhhh memories....
BLOG WEEK Wednesday brings our topic to MEMORIES. You know, it will be hard to pick just ONE. 
How do I decide between telling our diagnosis story, or the first day my girl wore her insulin pump, or the day her CGM was run over by a car.... oh, so many goodies in there!

But I think in honor of summer approaching I will tell the story of the boardwalk. 

Every type 1 has the same tale. We start out on shots. LOTS of shots. So, my little beauty started out when she was just three-years-old receiving 4 shots per day (not unlike any other type 1 diabetic but a shock to the system for anyone - emotionally). But we adjusted. Not yet being in school made that process a bit easier because we were able to manipulate her 4-hour eating schedule to fit our needs. But as we approached summer and we headed to the shore and spent time on the boardwalk that summer, WOW did we find it difficult to plan out what time we should head to the beach and what time should we head to the boardwalk (because the shot was timed so ALL activities revolved around that shot). And, of course, it was summer - and HOT - so perhaps she was not as hungry as she normally would have been so we sure did struggle with those numbers. I would say our first summer on the boardwalk was an EPIC FAIL. They wanted treats, we were reluctant - for crying out loud - we were NEW to shots - we didn't know how to ratio that out yet... guessing those carbs. My word, what a nightmare. So, please, if there are any newly diagnosed out there reading this, please know that you are not alone, we have all been there and know how difficult it can be. 

BUT THEN, I had some fantastic friends I had met who had been constantly encouraging me to check out insulin pumps. At the time I was thinking, "WOW, that seems like A LOT of responsibility! Geez, that seems scary! I don't know if I can do that!" But she kept after me and I kept asking questions. And slowly but surely I talked myself into believing that I could do it! And TA-DA!!!

Here she is on the first day wearing her pretty PINK pump! 

This pump has CHANGED OUR LIVES!

Honestly, I regret not doing it sooner but I am just glad we did it!





AND NOW is when I get to the memories I spoke of... our first year on the boardwalk WITH an insulin pump! For the first time, we had the freedom to move freely and do what we wanted, when we wanted! We could ride the rides when we wanted, eat when we wanted, NOT eat when we didn't want to and all without the fear of highs and lows that we couldn't control! 

The photos say it all...it was an AMAZING summer without the worries of shots and schedules. We had some FREEDOM back. Some feeling of normalcy. Not a "normal" that everyone else enjoys but as you can see, we were perfectly happy with it!






Tuesday, May 14, 2013

We, The Undersigned....

Day TWO (and happy Tuesday by the way!) of BLOG WEEK and today our topic is in honor of all of the petitions that have been flying around online lately (for example: petitioning to change the names of the diabetes types so that they may enjoy some autonomy since they are, in fact, DIFFERENT diseases). In that spirit, today's topic is: who would I write a petition to and why...hmmmmm... good one. 

Aside from the obvious, petitioning a "higher power" to wipe clean the slate of humanity and rid us of these terrible diseases... and focusing on the mundane and "PIA" and frustrating issues we deal with as parents of a type 1 diabetic I think I will choose to go with the wasteful packaging. I would choose to petition the manufacturers of the diabetic medical supplies to ease up a bit on the wasteful packaging excess. 



Now, I am sure some of this stuff is necessary for safe shipping and storage. But the first thing I do when I receive my shipment of test strips is open the box and consolidate the little tubes into HALF the number of the little tubes! HALF! Now, if you knew how much those little suckers cost, I can only imagine how much all of that additional packaging (the tubes, labels, boxes, space in the warehouse, shipping boxes, shipping cost, etc) this costs to waste this space when clearly twice as many strips fit into the tubes. I would venture to say they could pass at least SOME savings onto the diabetic consumers (who are already paying so much for all of their supplies) if they cut out on some of this waste. 




This is what the tube looks like when it arrives - this is "FULL!"
Really?!

Not to mention being a little kinder on the environment. And don't get me wrong, I am not an environmental fanatic. I do my part - I recycle, I turn off the water when I brush my teeth and chase after the kids to turn off the lights when they leave a room. But think about the amount of trash we could cut down on if these companies reduced by half their packaging. As any diabetic will tell you, we go through A LOT of these things!

So, my petition would be to petition the manufacturers, who, don't get me wrong, I still LOVE because they make our lives MUCH easier, to perhaps be more mindful of the packaging practices. 

Monday, May 13, 2013

Share and Don't Share

I am taking the leap and participating in Blog Week 2013! I am pretty excited about the challenge of writing each and every day about a pre-determined D-blog issue and then sharing it with the blogosphere! I appreciate the opportunity and hope you enjoy :-)

Today I write about our medical professionals. Our docs, nurses, etc. and the fact that - come on, let's face it, we only see them but for a few minutes every 3 months (which, granted is more than the average person sees their medical professionals) but given the weight of the medical responsibility we carry on a daily basis, this is a lot of trust. Do they know what our lives are REALLY like? I would like to believe so. Our doc's office is chocked full of Type 1 Diabetics so who better to surround yourself when seeking treatment and understanding?

When originally diagnosed, we were sent to a peds endocrinologist that was NOT "our cup of tea." And the list of things that I would not have wanted to share with THAT doctor's office would have been a mile long. We felt judged. We felt uncomfortable. We felt unwelcome. We felt "stupid." I had previously blogged about "Finding the Right Doctor" - CLICK HERE to read that blog. So, I feel it is important to find a doctor's office that you can feel "at home" with, somewhere you can open up and see them as your partner. 

We feel pretty lucky that our doc can appreciate the near OCD level of blood glucose management we strive for in our home. Don't sleep? Well, it is a small price to pay for a healthy child. 

And I have to admit, and you know if you are a loyal reader that I am a BIG fan of our continuous blood glucose monitor (CGM). What a fantastic device for the T1D mom that really leans heavily on obsessive tendencies! This device allows me to check her blood glucose levels whenever I want without having to stick her finger! She doesn't even have to know I am checking on her, which I hear from other D-moms will be nice as she approaches the teen years!

As for what I would NOT want to share? That is a tough one! I am usually a pretty open book (as anyone that knows me can testify to) so watch out if you get stuck behind me in the grocery line... you just might end up hearing my life story! Whenever I get to the doc I usually try to speak at light speed to squeeze in every possible thing that has happened since the last time we have seen her. And I am so thankful to have that kind of relationship with our doc. It makes living with T1D just a little bit less stressful knowing that they are accepting and understanding.

Though, I certainly can admit that I am as guilty as the next D-blogger, D-mom, etc. of not changing lancets in the appropriate or recommended time frame. Like - find me the person who does, right?!

Thanks for reading. 

Monday, May 6, 2013

Doing Something About It!

I have to admit, it feels good to take control and do something about it!

The county in which we live is not home to a lot of support for the families of Type 1 Diabetics. There just are not a lot of resources established for these families, of which we are one. 

I remember my daughter's diagnosis four years ago. Our pediatrician's office was able to make the diagnosis, but there were no pediatric endocrinologists in our county so we were told to pack our bags for 3 days and head to the next county over to a larger hospital that specialized in this sort of thing. And that is just what we did. Our whole lives changed in those 3 days. We had to learn to care for our daughter - how to count carbs, how to give shots (YIKES, right?!)- 4 per day, how to properly dose the insulin (two different kinds) and not screw ANY of this up or it could be bad... very, vary bad. And all of this on top of dealing with the mental and family issues that come along with this diagnosis. We had our three days and then were kicked out the door to face the world as a T1D family. Now, certainly we had plenty of follow up appointments and educational classes but there wasn't ANY SUPPORT for the soul if you get what I mean. Our family was there for us but they were in shock as much as we were and they didn't know how to cope or what to say. 

There is a reason support groups are set up in every community for every possible reason. Because they WORK! Over time I have made some friends in the "D-community," both here locally and online. So, finally after four years of living with this lifestyle and wondering WHY exactly we had nothing in our community we decided to take a leap forward and try to set up a support group. 

Let me first say, this is when you find out who your friends are! And WOW do we have some AMAZING friends that helped to make this happen for us so I hope they read this and know I am thanking them all! 

We started making some calls and sending out emails to find out how we would even go about setting up a support group. We wanted to host it at our local hospital because we felt it was a good central, neutral, and safe location for everyone. There was a surprising amount of hoops we needed to jump through to get clearance but we managed to meet all of the requirements and BOOM! We had our support group! 

We designed the group to have a separate space for the kids to meet and the adults to meet so that kids could get together with other T1D kids and T1D siblings and see that they are not alone. And the parents could speak freely without the younger kids listening in and perhaps overhearing something and misunderstanding and misinterpreting.

The first two meetings were a little light on attendance but we had people (and that second one barely counted - we had some crazy late season snow storm that absolutely interfered!) Then WOW on our third meeting we filled the room! I couldn't have been happier!

We have lined up speakers to come in and have plans for the upcoming months. And we are excited to see our group of AWESOME T1D families grow and benefit from each other :-)

And have decided that we can absolutely do MORE for the T1D families in our county! So we have decided to form a non-profit organization geared toward helping these families connect. Berks T1D Connection is the community-based organization dedicated to improving the lives of all those affected by type 1 diabetes through support, education, advocacy, and awareness. Please visit our Facebook page and give us a LIKE: BERKS T1D CONNECTION



It feels good to take action. To get out there and do something about it. 
I am excited to be a part of helping the T1D families in our community come together and assist each other in the daily struggles and triumphs of living with Type 1 Diabetes. TOGETHER we will make a difference!

Wednesday, May 1, 2013

As if Being Sick isn't Bad Enough

Here we are on May 1st and we wait and we wait and we wait for spring to finally arrive. We get some nice days then Monster Nature swoops in and takes away the sunshine again and we get some more cool and dreary rain (although, in all fairness, I will have to give Ma Nature an A+ for the next few days anyway - SUN!)

With all of these roller coaster changes in the weather (although I guess some people will tell you that is an 'old wives tale' - you now that the weather has anything to do with it) everyone seems to be getting sick with a late season cold. And it is a doozie. And I normally wouldn't complain too much because this past winter we made out pretty well, not a whole lot of sickness in our home. BUT, wouldn't you know that our little T1D catches this "whatever" going around and feels terrible. 

Most of the time, even while sick, her blood glucose levels remain fairly stable. But this illness through our normal expectations for regulated BG levels out the window. Off a bridge, really. 

For anyone reading this that may not know, when a type 1 diabetic gets sick, often their blood glucose levels will react unpredictably. Sometimes, often times, they will skyrocket... 

While some other people may experience lows that they have difficulty controlling.

We have been experiencing the HIGHS. So, we push more insulin and hope for the best. You gotta wonder, where is all of that insulin going?? Because it sure isn't doing it's job! 

So, on top of feeling sick: run-down, tired, coughing until her face turns red, congested. Then she has to deal with the complications and symptoms of high BG levels.

Type 1 Diabetes can really be a bummer sometimes. We keep our fingers crossed, our temp basal rates increased, our test strips handy and our continuous blood glucose monitor at the ready! And still every moment of every day I wish I could take this burden away and carry it for her. Just a parting thought...