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Friday, June 14, 2013

And, another thing I've learned…

As I go along, trying my best to educate, to advocate, to support…I find myself learning and growing as well.  Type 1, Type 2…yes…I said them in the same sentence.  For a long time, I felt like a traitor, mentioning Type 1 and Type 2 in the same breath…ever understanding that the confusion about the two starts right there…putting them together.  It used to make me angry when people would "lump" them together.

I have worked very, very hard, to educate people on the difference of the two “Types” but they do have a few things in common.  The most obvious, but most often overlooked, is People.  Each person affected, either by Type 1 or Type 2 Diabetes, is a Person.  That person belongs to a family, and, another thing the two types have in common, is that neither wants their disease.

I'm going to warn you right now, I am going to try to educate you on Type 2 Diabetes.  You all know very well the cornerstones of Type 1.  It is an auto-immune disease.  Nothing and no one can prevent it from happening if they have the markers in their genes.

Some of you may stop reading, some of you may make harsh comments, but, I want to share what I have absorbed, and, of course, you can take it as you will.  I understand, compassion is sometimes hard to come by, when something so unjust, like diabetes, stepped into your child’s life, your life, un-welcomed, without reason or cause.  Compassion for someone else, who seemingly had a choice whether to have diabetes or not…

but, if you take a deeper dive into Type 2, you will see, many, many people have tried very, very hard, to avoid Type 2...they've gotten the warning from their doctor that they are pre-disposed, that they may be at risk, that they have the signs and symptoms...and then they work HARD.  Some, many, are overweight. ( I can tell you right now, I could stand to lose a few..).Some, many, do not eat healthy, good for you foods. ( I can tell you I grabbed a handful of Snickers bites yesterday for my lunch on the go)...Am I a Type 2?  Not everyone who has Type 2 is lazy, or overweight, or just one ethnicity.  Not everyone who has Type 2 "just let it happen". Atheletes, lawyers, doctors ...moms and dads, grandmas and grandpas... many have Type 2 Diabetes.  Your neighbor, your friend...Type 2 is an epidemic in this country.

No one wants to be sick.  To feel awful, to risk losing life or limb.  In the end…we are all still people…and I do not wish hardship on anyone, and I will try to help anyone who is willing to ask, or at least be open to the possibility of learning…whether you are Type 1 or Type 2, another thing we have in common is that there is a struggle each and every day.  I try not to judge in degrees of hardship anymore, I have learned that inside, no matter what the type, or illness, or disability, we should not quantify other people’s challenges.

That being said, I understand that my challenge is no greater than someone else’s, I know.  My daughter’s challenges and struggles are no greater than some others', either, but be sure, they are certainly NO LESS. Recently, on a few different occasions, I have had to explain what it is like to be a parent of a Type 1 child…I see it makes people uncomfortable when they get that glimpse behind the curtain…there is a lot of pain there, a lot of struggle, and, it would seem there is a fine line between sharing what is true, and looking like we are “complaining”…we’re called helicopter parents, over-steppers, micro-managers,  “those” parents…the words hurt…a lot.  We react, strongly, when our children are the focus of mis-information.  We are parents who, every day, run on little to no sleep, constantly planning and coordinating life-saving care and meals, trying our very best to balance letting our child be A CHILD, and, teaching them things many adults could not comprehend or handle, so that one day, they will be able to take care of themselves and keep themselves alive.  Someone recently referred to “us” as a “tight-knit community”.  Damn straight.  We rely on each other not to judge our messy houses or our undone laundry, to support.  We go to each other for guidance, to vent, and to laugh—yes, there is “diabetes humor” and we know we’re the only ones who really get it.  I've got their backs and I know they've got mine.  Thank God for that, thank God for them.

 As people, in general, when we are walking down the street, we cannot begin to comprehend what it is like to walk in the shoes of those we pass…we may think others have it better…or worse…but, in the end, we are all just trying to get by.  I will always want to help, and encourage.   Do I fight for the rights of my daughter, am I more sensitive to her plight?  Of course!  We live this every day, every night.  I know this burden well, so I can speak to it firsthand.  Do I want to one day “get the call”…”the Cure is here!”  YES.  I do.  Very much.  And so, I will go on doing what I can in the meantime, for my daughter, for all living with Type 1.  But, that doesn't mean that others still don’t need our help, service, support.  I will be there for them, too.

I am in no way a medical expert, but, from my perspective, I’d like to clarify some of the misconceptions. The two diseases are listed below (please feel free to share if you think it would help others to understand!):

Similarities:  People are affected.  In each Type, there is impaired glucose metabolism leading to elevated blood glucose.  (in English:  Both are related to blood sugar levels and how the body produces insulin.)
Differences:


Type 1 Diabetes
Type 2 Diabetes
Also Known As:
Juvenile Diabetes, Insulin Dependent Diabetes
Adult-Onset Diabetes, Non-Insulin Dependent Diabetes
Definition:
An Auto-Immune Disease where the Pancreas makes very little or, more commonly, NO LIFE SUSTAINING INSULIN
A Metabolic Disease Pancreas does not make enough insulin, or body doesn’t use insulin correctly.
Usual Age of Onset
Adolescence, but can happen older.  NO KNOWN CAUSE.  NOT RELATED TO ENVIRONMENTAL FACTORS such as diet or amount of exercise.
40-60 years, but can happen in youth with genetic and environmental factors of poor diet and exercise
Symptoms
Appear SUDDENLY (within days or weeks):  frequent urination; extreme thirst; elevated hunger; extreme weight loss; lethargic, moody; blurred vision.  *Nausea, vomiting requires IMMEDIATE ACTION.
**Elevated Blood Glucose
Can come on gradually, may not feel a change in symptoms at all.  Increased thirst, increased urination and hunger.  Tired, sick to stomach, loss of weight, infections that are hard to treat effectively, blurred vision, loss of feeling in hands or feet.
**Elevated Blood Glucose
Treatment
Requires Insulin injections to stay alive.  Daily Multiple Injections of insulin taken by syringe, pen, or pump. 
Healthy diet; exercise, weight-loss/maintenance.  Oral medications and/or injections may be necessary.
Cause/Preventable
 Genetic markers with onset trigger of virus or unknown factors./ Not preventable.
Genetic and environmental factors./ Preventable, delayed onset.
Complications
Hypo (low)
 or Hyper (high) glycemia (blood sugar) that can lead to coma, nephropathy, blindness, heart disease, stroke, neuropathy, amputation, can be fatal if goes untreated
Hypo (low)
 or Hyper (high) glycemia (blood sugar) that can lead to coma, nephropathy, blindness, heart disease, stroke, neuropathy, amputation, can be fatal if goes untreated
Total of “Diabetes” population
10-15%
85-90%
Additional Information:

Sunday, June 9, 2013

There’s been something I’ve wanted to write about for a while now…as the journey goes on, the learning never stops, the morphing into whatever I need to be at the time, that time just keeps ticking away…without a cure.

My daughter has had Type 1 Diabetes now for 13 years.  The “they should have it figured out in ten years” milestone has come and gone…then the “who told you that?” phase was short, moving into, finally, acceptance.   I sit and let the word resonate on my palate like a fine wine.  Then I cry.  For a moment, it seems that hope is lost.  Hope, is gone. 

No cure, no end in sight, night after night of praying and tending to the ghost of what might happen if I let my guard down.  More number crunching, more juice boxes bought for the “lifesaving shelf” (I should have bought stock in Juicy Juice!) , more number crunching, an eye on what the next best thing will be to make her life just that little bit more “normal”.  My emphasis switches from relying on hope to relying on the practical items that will get her through the day, make her life better, the practical of Living with Diabetes.  I hate it.  Is this what it is going to be?  Hearing day after day about another child passing away, another struggling with diagnosis and asking, “why?” … The day in and day out of working to make a difference…until, when, exactly?  Bitterness, exhaustion…defeat. 

But then…wait…what is that???  If I listen closely enough, I can hear the pitter patter of little feet in the back of my mind…as the steps grow louder and bolder, I recognize this old friend that has helped me time and time again…HOPE.  Oh…I have missed you…HOPE…HOPE!  Hope for a Cure, Hope for a better life, HOPE!

If there is one thing I’ve learned through this journey, it is that without my side-kick, Hope, I am truly lost.  And I will HOPE.


A short story to share the Footsteps of Hope:  We were fortunate enough to be able to include a glucose monitor in our toolbox of “the next best thing to make life better, a little more “normal”…if sticking another device into your child is acceptable to you as “normal” in this life we call diabetes!

We received our Dexcom on a Wednesday and decided to wait until Saturday to start so that we could both watch the video and learn together, and, not rush the process.  We were both a little concerned about the “plunger” – manual insertion – as the Minimed had a spring loaded device and that had hurt terribly.  Caitie decided to ice the spot while we watched the video of how to insert the sensor.  (2 minutes,tops!)  I helped with the first one and, being the first time, it was awkward and we didn’t hear the two clicks right away…but got it done.  Caitie said it did not hurt at all!

Caitie went to a friend’s house to hang out that evening while we were out with friends.  We picked her up and got home around midnight.  We looked at the CGM and it said 130 with an arrow down.  We tested and the meter said 141.  We discussed a snack, or, were we at the “bottom of the arrow” since her BG was 141.  Caitie said she didn’t feel like she was dropping.  I stayed up another ½ hour to check her again, to see where she was.  At that time the CGM said 140-something (I can’t remember right now!) and so I went to bed and she was asleep.

At 4am I heard an alarm and went in to check on her.  I don’t think I heard the alarm the first time, and, Caitie was sleeping right through it all.  I cleared the alarm and got her test kit.  The CGM said 48!
I tested and she was 52.  I grabbed two juice boxes and got her to drink them (still sleeping).  I waited 15 minutes and tested her again…51… got another juice box and had her drink that one … she finally started to rouse and was drowsy.  She gave me that teenage look like, “Why are you sticking that straw in my face?!”  Another 15 minutes or so she tested at 78.  I waited a little while longer and she finally was in a safe range.  I think that the CGM saved her life that night.  The very first night of wearing it.  If it wasn’t that, I certainly believe it saved her from having a seizure.  I got goosebumps.  As a parent, I was breathless.  This CGM is a step in the Hope that I have for a Cure…it is a step in the right direction…that there are people out there working to save my daughter.

I have been asked, recently, what I wish for my daughter…without hesitation but with tears immediate to my eyes, I whisper, “A Cure”.  I clear my throat, allowing my voice to strengthen, and I again say, to anyone who asks that question, “A Cure.”  Hope brings me closer to that Cure, Hope lifts me out of bed in the morning, through the challenges of each and every day, and Hope is there when I drift off to sleep.  Hope is what I share with my daughter.  How different life would be for all of us if … … …


And, so, I say, Hi, Hope.  Thank you for being beside me until that day comes.  Please don’t ever leave again.