Unless you are a Type One Diabetic, or live with a Type One Diabetic, I don't expect you to understand what living with T1D is like.
I don't expect that of you - because I can't expect that of you.
I can't expect you to understand what it's like to wake up at 5 AM in the morning because your blood sugar is low... I can't expect you to understand what it's like to rip a site out of your arm while putting on a shirt... I can't expect you to understand what its like when one of our blood sugars is 400 and we can't fall asleep... I can't expect you to understand what its like when one of us wants to go to bed, but a "No Delivery" will have us do the opposite... I can't expect you to understand the emotional toll that diabetes takes... I can't expect you to understand the fact that this battle is 24/7, a battle with a careless disease that never stops...
So why say all of this? Why force you to read something that may seem "wordy" and maybe even "empty?"
The reason I do is this:
In this fight we can't win our reality does not stop, and the pain does not subside.
It seems that the longer I'm in this, the more and more people expect us to fit in with their normal, to give of ourselves, or to be more "involved." It seems that the expectations continue to rise because "obviously" Type One gets easier.
Here's the truth- who we were died with our pancreases.
It is this way for every T1D: it's not optional. There are things in life that are not easy to go out and do. You can't do anything without preparation, can't go anywhere without plans, and can't accomplish anything without a strategy.
Is this bad? No... this is our "normal" - we have to adapt.
I could go on - use more example and expound on various T1D issues - but I won't.
I'm simply making one request: please be caring.
Caring doesn't mean you have to understand: it doesn't mean you have to do or physically say anything. It just requires you to think.
Think before you speak, and think about just a snippet of what T1D entails.
I'm not asking you to understand Type One Diabetes . . . I'm just asking you to care.
We have reached the middle of November- Diabetes Awareness Month!
Though I have not done a good job of daily keeping up with different challenges, posts, activities, etc- I know we have had an awesome month helping raise awareness!
(Hannah/Daniel's Classmates&Teachers creating the "Blue Circle")
I would like to say a BIG "Thank You" to all of my FB friends, college buddies, and Daniel and Hannah's school friends for showing so much support! It has been incredible! I love it when I see this icon...
- scattered throughout thousands of FB Profile Pictures. :) It is truly awesome to see how many participated in the Thunderclap Campaign by JDRF. Through it, 2,555,000 people have been reached via social networking!
All this to leads me to a surprising yet frequently asked question: Why raise awareness?
So the first thing that comes to my mind when asked this question is... "Why not!?" But (obviously) the people asking this question need more than a question in return. So here it is:
1) Awareness is Support
The whole reason people are out there trying to spread awareness is to show their support for those fighting this disease! Actions go beyond words. It's not a matter of only saying something, it's a matter of doing something in order to raise awareness for those that don't understand. Why is this important? Because the more people that understand, the better the chance of raising support for a cure. I understand, I have done the research and I hate even addressing this topic. Logically, a cure is about 2 life-times out. But hey, it's the 21st century, and Fredrick Banting discovered insulin when everyone said it was impossible!! Don't give up quiet yet. ;)
2) Awareness is Safety
A misdiagnosis for someone that really has T1D can be huge. Raising awareness could be a deciding factor that might save someone's life! Misdiagnoses and incorrect information can be big factors for a case of Type One Diabetes. Not only this, but raising awareness is creating a "safety net" for T1s! Think about it: if you found a person passed out on the ground and saw that they had a diabetic ID, insulin pump, or glucose (blood sugar) meter - you would have a huge advantage over someone who has never heard of Type One Diabetes. (I assume you have read/ watched the information displayed throughout this blog) My point is this: being silent about T1D doesn't improve safety. Why wouldn't you want to encourage protection for people with T1?
3) Awareness is Hope
For those who have just chosen to be pessimistic about "Diabetes Awareness," that's your choice. Just don't let your negative viewpoint be the pin that bursts the bubble of hope to which many still hold. Many special people have taken their time to do some pretty incredible things for diabetes awareness- and that's awesome! Let's keep this energy flowing and keep spreading awareness!
To show some of these efforts, here are a few photos from across the globe...
So a little explanation for these video ideas. We are using these videos to work through commonly asked questions. Not only do using different effects help bring humor to the videos, but it helps us be able to easily diffuse diabetic myths!
I know some may wonder why the "chipmunk voices, big eyes, and poor video quality"? The fact is that simple and funny help transform boring topics into something that can at least capture one's attention long enough for the information to sink in!
First off, I would love to welcome all of my new
friends/families that have found my blog from Marrakesh! This is it! :) I
started the blog a week after my diagnosis. You can click the "Archive"
button on the right side and click back till you find February of 2013.
That is when the "T1Trio" began.
I find it difficult to transfer my thoughts into words . . . to simply type out the experience my whole family encountered over the small period of two days.
Below are a few thoughts to sum up our weekend:
First of all, the connection. There is nothing like going to a camp that you know very little about, with people you know nothing about (except they're Type One- which makes them awesome!), and attempting to get to know them.
In most instances, I wouldn't know what to say, how to act, what to do . . . yet within 15 minutes of arriving at Marrakesh, our entire family was spread out at numerous tables building relationships with people that could last for the rest of our lives!
What we experienced as a family was not just meeting people but falling in love with them. We were connecting on a deep level: sharing our hearts, our fears, our pains, and most importantly - our hope!
Secondly, the kids were absolutely incredible. Not only did they breeze through the management side (finger pokes, shots, lows, highs), but they were inspiring to everyone around them. All of the T1D campers had been diagnosed with Type One for only one year or less, which made their already-incredible management skills even more incredible! :) Getting to spend time with the kids reassured us that if they could do this, we could do this! That was one of the greatest highlights of the weekend: finding support in each other.
And lastly, spending time with the adults. When the parents and children split, we all had opportunity to chat with the adults. The parents always have and always will be the ones carrying a primary part of the pain and pressure of this disease. Understanding this helps us to see into the reality of what these parents were going through. There is an overwhelming reality to what this disease holds and represents. Finding peace through this time is the key to coming to acceptance with the "new normal."
Our whole family was able to talk, share, love, cry, and relate on multiple levels to everyone at Marrakesh. I think that this was one of the most healing parts for our family. Being at only 4 years into our Diabetes Journey we are still at the beginning . . . we are still adjusting, and we are still learning.
In conclusion, this weekend wasn't exactly about us getting to "host" a camp. We were able to help heal, and to be healed; to love and be loved; to inspire, and be inspired.
Oh yes . . . and to laugh! If you don't laugh, you will probably start crying . . . just saying. ;)
Due to the fact that 90% of the 5,000 photos on my MacBook were taken by Daniel, I find it hard to find many pictures of him! I did my best and hope it gives you a little insight into his journey so far in this disease.
You are inspirational, Daniel. I have a lot to look up to in a younger brother. ;)
I know, I know... I have been terrible about blogging lately and I apologize for that. I have just finished the first rounds of tests in college, all my drug screening/vaccinations for ER position which starts October 6th, and the other two T1Trio members have just about completed their first month of school!
Though the school year always proves to be crazy, it helps to look at the positive side of it! For one, I have already met four other Type Ones on campus!!! We eat lunch together, exchange numbers, and smile at each other when we hear the melodious sound of a pump alarm echoing in the dining common. :)
Another bright spot is going to be Camp Marrakesh this coming October. It is a diabetes camp weekend run by the American Diabetes Association. The camp is for newly diagnosed (within 1 year of diagnosis) children and their families! This year we have been asked to be the host family! Pretty much we get to greet, speak, and interact on a personal level with the families. Our family is thrilled to take part in such an awesome opportunity. Getting to be with newly diagnosed families brings me to this question:
"How does one get past the "beginning" of their diabetic journey?"
A journey with a disease that works to ensnare your attention, joy, and hope.
I feel like I have had diabetes for 10 years . . . in reality- its only been 1 1/2 years. That's not very long.
At max our family has had diabetes in our life for 4 1/2 years. That's not very long either.
I look for it to get easier. Some people already assume that it is. We have three kids with the same disease, it seems like we have been dealing with this for a long time, we look like we have it all under control.
And in a way we do. But at the same time, uncaring comments still cut, finger pricks still sting, insulin still burns, sites still become infected, insulin goes old, blood sugars go high, blood sugars go low . . . every detail of this disease still feels like a "big deal" to me.
Will it always be this way? I'm not sure.
I watch my new T1D friends that have this disease for 18+ years and still cringe at the pain of a finger prick, still have bad sites, and still have bad blood sugars;
I also see myself, my siblings, my T1 friends, and most T1s I meet have one common characteristic: we have to keep getting better.
“seasons” in life that are so difficult you simply struggle to breath.
You wonder if it will ever end.
For some, there is no light at the
end of the tunnel.This is their life
now.The path has been set, the die
cast…this cross will be carried until death.
How do these courageous lives bear
up?Who in the face of great adversity
displays strength of character, and even the will to sacrifice for the needs of
other?The reality of diabetes cannot be
escaped or ignored…and yet there must be relief and rest found.
As we see the
gifts all around us, it adjusts our “lenses." It adjusts our perspectives.It gives us hope.It reveals love all around us… many times
wearing shoe leather.
As I have
counted my numberless blessings this week, I am humbled by the love shown to
children loving their new school, schedule, and friends.Diabetes had made our world very
“small.”How good it is to breath air
among the living again. As our Pastor said last week, “Hope is an amazing
call last night from a dear friend;just
calling to help the children with math homework.
bushel of beautiful homegrown apples. Applesauce that tastes like “liquid gold.”
from friends - both old and new - that encourage, uplift, and strengthen our
look that says “I believe in you.”
excellent husband: loving, patient, loyal, tireless, funny, burden bearing,
always believes the best in me.You know
you married the right one when you only grow to love each other more.
who are willing to read the pink panther diabetes book just so they can help
our children to feel safe.
As you can see, remembering brings
We are not alone.
Trials make the relief even sweeter.Not when this trial is over; we would prefer to fast forward this.
The relief comes in the trial.Relief comes from thanksgiving.
For me, I will be beginning my sophomore
year in college. As for the other two T1s, they will be entering
uncharted territory - an academy. Not only will they be back in an
actual school (since our diagnoses), they will be 30 minutes from home.
to our rather overwhelming and rare scenario, homeschooling has been
the primary source of education through all three of our diagnoses.
Although we are a bit nervous about all of this, we do have a gameplan.
Through the provision of Get Diabetes Right, we have been able to use a simple and very helpful poster for all of the teachers in the school.
Not only has Get Diabetes Right provided this material; they have also written some excellent material for many common questions!
there are many unknowns in entering the academy. Many fears, many
"what-ifs," many potential problems . . . but that pretty much sums up
this disease. We never know what low is hiding around the corner, or
what high is about to hit, but we can always be prepared and flexible . .
. very flexible.
Rainbows and Unicorns: the most common response to many diabetes-related questions.
But there is so much more beyond the fluff and the clouds.
Actually, life with T1D is crazy:
It's a fact.
Life with Type One Diabetes multiplied by three is that much more crazy!
hit me this past week that I really haven't had Type One all that long.
Our family hasn't known Type One all that long . . . we haven't even
reached five years with T1. We haven't had an opportunity to really settle down
into a "new normal." Every time we were close to "taking a breather," it seemed like
another child was diagnosed.
The emotions and pressures of diabetes can act just like our
blood sugars . . . One minute we will feel on top of the world (because
sugars are somewhat under control), and within a mere 24 hours it can
flip to the opposite extreme. Not only does this happen to one of us,
but it seems more of a domino affect in which all of us take a
simultaneous nose dive.
The best part is when people can see we are struggling, they love to add their much needed advice.
"At least you all have the same disease so it's easier to manage!"
get that input much too frequently. I don't know if this mentality helps people feel better about our situation, or if it is just the same perspective
that says we "get used to needles, and they don't hurt".
way, I have found that people will be people. Their curiosity and
self-confidence drive them to speak things they really don't mean.
And often we are left in a sticky wicket in which the "Rainbows and Unicorns" reply fits best.
I would love to stop and explain how crazy numbers are, how many nights
we are up with one of us three, how long 4 years of diabetes seems,
and how big of a journey is ahead of us. But that is really not their
don't think many people could handle knowing how difficult some days are! This
is a challenge that is God-given. A daily battle that we have to fight.
between you and me, diabetes isn't all rainbows and unicorns, but we
all are adjusting - doing our best. And (thanks to Frederick Banting) we
are all living too! ;)
This past month has provided awesome speaking opportunities for the Type One Trio! Though we couldn't get all three of us together, we were able to participate in separate events!
The first of these entailed Hannah, Daniel, and Dad flying out to Minneapolis, MI. They are part of a study group that gathers information on contrasting views of a T1D patient and their health care provider. Out of 40 people in the group, it was pretty cool to see them chosen for this trip. Although I wasn't able to attend, I was told that the trip was a great success!
(Not to mention getting to fly, staying in a crazy big hotel, and sight-seeing in Minneapolis was a big bonus!)
(Sorry this is the only one I have)
On July 18th, I was able to attend Camp Endeavor in Madison, WI. It is a diabetic day camp for newly-diagnosed families. I was part of a six member panel that would answer questions, whether preset or brought up by those attending. It was an absolutely incredible time, and getting to meet newly-diagnosed families was pretty awesome. Though I myself am rather new to T1D, I found that being able to share my humor and our family's story was very helpful for some overwhelmed families. It was truly inspiring to see these new families doing so well! The beginning is definitely the hardest.
As for the lack of posts this summer, I apologize! It's been hard to even get to my laptop with the hectic craziness of work and activity! I have found that college is more conducive to blogging than summer! ;) I will try to post more here in the upcoming weeks!
Sometimes Type One can be very overwhelming. I know this as a fact both in our life with diabetes, and
many other T1Ds that I've communicated with.
This put me to thinking . . . What are some ways one can limit their diabetes?
let me establish an important point. Limiting one's diabetes has nothing to do with
diabetic care. When we quit using insulin or we neglect to monitor our
blood sugars- it a simple fact: we (any Type One Diabetic) will die. T1Ds are not insulin-resistant, but insulin-dependent. It makes a big difference.
Okay, so now for my "limiting diabetes, live-life somewhat normal" idea.
The first step to limiting the diabetic overload: "Do what you love".
me, this is running. I know that sounds simple, but it ends up being rather complicated. When I go for a simple four mile run it entails 4
blood sugar tests, eating an average of 12 glucose tabs throughout the run, suspending
my pump, and closely monitoring my blood sugars for the rest of the
day. I love running! It helps me think, helps relieve stress, and
helps me feel normal. Though it takes a lot of extra management,
it's worth the effort.
Second step to limiting the diabetic overload: "Take it one day at a time"
you look ahead of today, you will be overloaded by the enormity of the
disease. It's lifelong, difficult, and painful- both mentally and
physically. Learning to take diabetes one day at a time will prove to
help in "stress-management". All you have to get through- is today.
Third step to limiting the diabetic overload: "Never stop Hoping"
past week I have heard a good bit about new advances in
endocrinological research. Some people see the new
bionic/artificial-pancreas as functional within three years, however,
other researchers see that as a full lifetime before it can truly be realistic. Frankly, I have no idea who to believe. Whether it is a cure- or a bionic pancreas, one
thing I do know is that miracles do happen, God is in control, and that
nothing is impossible.
some researchers say such feats of science are impossible- but so did the critics of Frederick Banting . . .
Many people view Type One as a disease that has already been cured.
This is an unfortunate mishap that we have encountered, and now live with. I would like to believe it is in my imagination, but the "mishap" was told to me by a pediatrician.
A major part of Type One that people often miss is that there is more than what we see on the surface.
Type One isn't skin-deep. It's not something you "get over" and it's not something that "goes away."
There is no simple fix.
T1D isn't just blood testing, shots, new sites, fresh insulin . . . those are obviously a vital part of "being a pancreas," but diabetes management far surpasses these externals.
There is a emotional side and a mental side: continual stress that never ends.
Every day living with Type One is full of repetitive tweaking and adjusting insulin dosages, rollercoastering blood sugar levels, and adapting to the physical affects of bad blood sugars.
There is a constant dread of a low blood sugar during the night, a high blood sugar when taking a test in college, a low or high blood sugar while driving a car, constant ketones that threaten to hospitalize, bad sites that skyrocket blood sugars, warm insulin from being in the sun - the list goes on and on . . .
My point is: Type One isn't cured. Insulin is an incredible tool, just like
a meter or pump - but it can't end here.
One day I hope to be able to say the same thing as 3,000,000 other T1Ds,
Type One would like to consume our hopes, ambitions, plans, future, happiness... the list is endless.
Every day is a choice.
Every time we bleed a finger, insert a port, give a shot, or correct a high or low - we are in a place of decision.
Every time we are discouraged, hurting, overwhelmed, or emotionally spent - we are in a place of decision.
Yet, Type One can be both positive or negative.
One can provide the fuel to help others - to reach out. It provides the
purpose to meet other incredible humans who battle the same disease
I mean by "fuel" is to give energy and motivation to do more! It can
either fuel one to reach out, or prevent them from taking those steps to
go forward. Diabetes is the fuel that can make one stronger or weaker.
It is fuel that can provide empathy towards other hurting people, or
sometimes hurt you.
So here is my first guest post! How fitting that it be written by the one who never stops giving to the Type One Trio. My mom is truly amazing! I hope you enjoy her post as much as I have! :)
Four years ago, if
someone would have told me I would be writing about type one diabetes- I would
have laughed.That I would be writing
about my 3 type one children would have been shockingly unbelievable.
And yet here I am…here
I am the mother of 5
precious children; four boys, and a girl at the end.
Our three youngest were
diagnosed with type one in three years.More of my children have it, than don’t.A statistic that is still overwhelming.
This is a “club” that no
one wants to join,
A road no one would
choose to go down,
A new normal that never
goes away and is constantly changing.
So how do we do it?
We do today.
This is our life
now.It is our story.Most importantly it is God’s story.
As a mother, I want to
protect my children from pain. To shield them from the weight of life… at least
until they are older. To fix what is wrong.
Diabetes has shifted my
thinking.I can no longer protect them
from pain- it is now a constant companion.
I can’t delete diabetes
from their lives - it is here to stay.
I can’t make this road
an easy one - because it stinks.
How do we do today, you
One step at a time- One
finger poke at a time- One blood sugar reading-One treatment of lows or highs . . .
One day at a time.One hour at a time.Sometimes, even one minute at a time.
There is only enough
grace for the next step.If we shine the
light to the future, we would all crumble.
It is too big.
We show love minute by
You see- love bridges.
It carries the one that
It changes our
It laughs at things that
used to cause us fear.
It believes in a higher
It is thankful that you
have a child that is living, even with a chronic life long disease.
Love is seeing purpose
even when surrounded by pain.
It is reminding us that
God is good.Even when He chooses things
we don’t understand.
Today is a gift.One to cherish and be thankful for- no matter
what the circumstances.
"As we wrap up another Diabetes Blog Week, let’s share a few of our
favorite things from the week. This can be anything from a #DBlogWeek
post you loved, a fantastic new-to-you blog you found, a picture someone
included in a post that spoke to you, or comment left on your blog that
made you smile. Anything you liked is worth sharing!"
First of all, this has been an amazing experience! I absolutely loved the opportunity to have topics provided for me, and the incredible Type One's I have met through this! Thank you especially to Karen Graffeo at Bitter~Sweet for heading this up!
Each day, I took a few minutes to scroll through other blogs after submitting my own. There is no way I could possibly pick a favorite- each and every blog had special personal views of life with diabetes. That's one of the awesome parts of the DOC (Diabetes Online Community) is that it provides endless amounts of stories, ideas, and support!
One of my favorite posts this week would be Keri Sparling's "Diabetes Hacks". Due to the fact that the Type One Trio is relatively new to Type One, we haven't quite figured out all the "hacks". Keri had mulitple helpful ideas that will surely be implemented into our diabetic living! :)
One of the newest blogs I found was Katet1d's Blog. She does an excellent job of personalizing her T1D story. Looking forward to getting to do more reading there!
Overall, this was an amazing week of blogging and I look forward to next year's D-Blog Week! Thanks to all who participated, and to all my readers - like you! :)
Today it’s time to share some pictures for Saturday Snapshots. Back for another year, let’s show everyone what life with diabetes looks like! With a nod to the Diabetes 365 project,
let’s grab our cameras again and share some more d-related pictures.
I thought it would be a better idea if I went through the "diabetic archives", again, to show you our life with T1D.
(This is one month's supply from the Pharmacy, this doesn't include Pump supplies- they wouldn't have fit into the picture!)
(This was me doing my college work before the pump)
(This is me doing college work after the pump)
*As we progress along through these pictures, may I add- I have a "thing" with taking pictures of all the highs. I don't have pictures of the good numbers because they aren't as exciting. Please do not assume that numbers are always this high . . . they aren't. :)
(Lowest T1Trio low on record- we strive to NOT break this record)
(The dreaded "No Delivery", if you have a pump- you understand)
(Three T1s in three years.)
In conclusion, here are a few snapshots of our T1D life! I have thoroughly enjoyed this D Blog Week!! Our final day is tomorrow. If you would like to read more diabetic blogs, go to Bitter~Sweet "read on"! :)
"Share the (non-medical) tips and tricks that help you in the day-to-day
management of diabetes. Tell us everything from clothing modifications,
serving size/carb counting tricks to the tried and true Dexcom-in-a-glass trick or the “secret” to turning on a Medtronic pump’s back-light when not on the home-screen"
I wish I had a super long list of your amazing hacks, but for the Type One Trio- we've only been in this for four years. We have a lot of hacking tips to discover!
Though I may not have any "hacks" for you, I'll tell you how to have PERFECT Blood sugars!
Today at my siblings appointment, our Endo told them a story about her most complex Type One she has cared for.
Her patient, a mere 12 year old, would come for his appointment every three months. Our Endo would do the usual: hook up the tester, talk about the sugar levels, and then compare and review to the A1C.
For his glucometer readings, he had perfect blood sugars. No highs or lows.
As for his A1C- it was 14.
(That's an average of 380!!)
Perplexed, she would inquire how this could be possible. The diabetic would deny everything and reply that he was doing what they asked. Testing his blood- and giving insulin.
Our Endo never figured it out- year after year his A1C progressed to get worse. She was completely stumped and couldn't get him to cooperate.
Years went by and the diabetic boy moved on. Many years later, she ran into him at a grocery store. He was then in college and doing much better with his T1D care. When she asked about his crazy A1Cs as a child he simply replied,
"Easy . . . I tested my dog"
Live and learn: You CAN test your dogs blood sugar, but the A1C never lies. :)
(Disclaimer: Although I should never have to say this- do not be "that one" who will repeat this at home!)
share what gets us through a hard day. Or more specifically, a hard
diabetes day. Is there something positive you tell yourself? Are there
mantras that you fall back on to get you through? Is there something
specific you do when your mood needs a boost?"
A diabetes day.
What is a hard diabetes day?
They are inevitable- and usually inescapable.
Days when we have to give multiple site injections for our pumps - because of a bent cannulas.
Days when we have to test our blood sugar every hour to give insulin - because of high ketones.
Nights when it is 2:30 AM and you are drinking orange juice - because of low blood sugar.
The list goes on . . .
Simply put - if you have diabetes, you are going to have hard days.
If you think about it, a diabetic's blood sugars are constantly fluctuating from low to high- all the time. High blood sugars will affect the way you think, feel, and respond because of too much sugar in your bloodstream. Low blood sugars have the same affect, but this time there is too little sugar to properly function. The human body isn't made to have blood sugars of 34 or 589. When you leave the "normal range"(80-120), you begin a journey into an emotional and physical roller-coaster ride.
So . . . what does one do when these hard days gloom overhead?
For the Type One Trio, it seems to be a constant rotation. One will be low, one will be high, and one will be perfect- you never really know. When the bad days come, it helps to have each other because there is a foundation to work off of through the day. The one(s) that are feeling good, are able to help the one(s) that isn't.
Many times there is nothing you can do to avoid a "hard diabetes day." Medication, colds, and allergies all have special abilities to skyrocket our blood sugars. Learning to keep a right perspective is essential.
For me it is simple:
We are still alive.
Sure, Type One is not easy, predictable, or safe - but we still have an incredible gift: life.