Soap Box Time

Not sure what has inspired my posting today, perhaps it is the perpetual soap box I have the tendency to hop up onto anytime I run into any type of comment or circumstance that continue to show me how much people do not know about Type 1 Diabetes.  I guess I consider it my life-long job to not only care for my T1D child, but educate those whom I come across about Type 1 Diabetes at any given moment. Is this one reason Type 1 Diabetes has come into our lives? Perhaps. If not, then at least I am slowly educating those around us and raising awareness and sharing knowledge.  The more you know, the safer my child will be, the bigger the potential for this information to save your child’s life, and the less my child will have to fight for understanding and acceptance. Ignorance and lack of education and REAL understanding surround Type 1 Diabetes may just be the biggest brick wall I have ever hit…and proves to be one that is tough to climb. I will continue to push past this wall and demand for a better future for my child and any other child (or adult) who may have to face this illness.

I wish I had words to actually describe what it is like to have a child with an incurable chronic illness; one which there is no known way of prevention either. The loss of power, control, and sense of security alone can make one crazy. I can search all day long for the right words, but will never be able to accurately describe what it is like, how I truly feel.  I do not think words are capable to sum up all my hopes, fears, trials, thoughts, knowledge, dreams which relate to Type 1 Diabetes.  I can say this a thousand times and never be heard enough…but you will truly never fully understand it unless you live it and treat it like it should be treated.  It is a very complex disease.

If I had a dollar for every time I have come across someone who just didn’t understand T1D, has had the wrong information, isn’t caring for their child as well as they could be, or just plain ignorant; I am sure I could fund enough studies to find a cure for T1D…and that is saying I come across such situations quite frequently. What I do now will directly affect the quality of my daughter’s life.  How I educate her, teach her the importance of balance, what I do on a daily basis, how I advocate…all of what I do now will directly reflect on what she is able to do/does for herself as she grows up and is on her own.  When her life depends on how well I do my God given job, I can never do enough or learn enough.  I have found myself in awe of some amazing caregivers who do what they do graciously and fabulously.  And other times I find myself aching for those who just do not understand this disease and struggle learning exactly what it is they should be doing.  It can be overwhelming, it is a HUGE job…but it isn’t impossible.

Some people think the quick fix is eating differently.  Wrong.  Eating healthy is for EVERYONE…not just for Type 1 diabetics.  Eating differently will NEVER mean a cure for my child.  Zero carb diet can mean build up of starvation ketones, as my child NEEDS insulin to survive…her body doesn’t have the insulin making capabilities as yours. Kinzie can eat anything everyone else eats…no matter what she eats, she needs insulin.  However, most of the time she does eat more on the healthy side because she has to keep her body as healthy as possible, as it is fighting every day; but she CAN eat what you eat. Insulin IS just life support. It only keeps her living as long as I give her the correct amounts every minute of every single day…not only for the foods she consumes but for the baseline (basal) insulin needed to sustain just her major organ functions.  Everything affects her blood glucose from weather, emotions, hormones -to- seasons, stress, illnesses.  So dosing correct amounts of insulin can only be educated guesses needing fine tuning continuously.  Too much insulin can be just as deadly as too little insulin.  That alone is a large task to take on daily.  If ever I believed in reincarnation…I would make one heck of a pancreas for someone.

Exercise…It’s good…most of the time.  Just like everyone else, exercise is good for her.  That is, unless Kinzie isn’t low or high with ketones on board.  So exercise alone brings to the table a whole new set of variables to take into account.  For Kinzie, exercise plummets her blood glucose very quickly and we have been able to adjust her basal rate and pre-load with carbohydrates to compensate for her very busy activity schedule…dance and gymnastics alone (5 days a week) are rough…add anything extra and it zings us every chance it gets.  But we love it and encourage it just as any normal person should.

Illness is never fun for anyone…add T1D and you will see the benefits of modern medicine at its finest.  Any illness from a cold, sunburn, to an infection, virus, stomach ache…they can all be potential threats to life itself.  Any illness requires extra checks, fluids, monitoring, adjustments, and prayers. Blood glucose levels in T1D fluctuate so much as it is…illnesses magnify that by one hundred. Ketones can build up from too low BG and throwing up (starvation ketones) or from sky high BG levels not correcting like they should and dehydration (ketones). High levels of ketones will eventually lead to DKA (diabetic ketoacidosis) which leads to acidity, coma and eventually death.  DKA is a challenge to reverse and has the potential to cause major damage.

High blood glucose levels cause so much damage.  You can look at anyone with type 1 diabetes and not even know they are T1D…you cannot recognize the war raging inside.  Suffering from a silent illness is hard…especially one that is surrounded by so much stigma and misinformation/lack of information. I couldn’t imagine fluctuating like T1D’s do on a daily basis…how their bodies feel.  Signs are extreme thirst, frequent urination, headache, lethargy, sweating…etc.  (Imagine experiencing those symptoms pretty much every single day…some days without reason or rhyme). It can lead to DKA, coma, death. (so much more information should be inserted here…but I would be writing on T1D forever).

Low Blood Glucose levels are emergencies.  They can be deadly in just a matter of minutes and require quick corrections.  T1Ds carry around (or should carry around…no excuses) glucagon kits.  Glucagon kits can be life saving…at our house we have several in key places like fridge, purse, dance studio, dance bag, kinzie’s purse…oh everywhere! Low blood glucose level signs can be shakiness, fatigue, lethargy, coma, unresponsiveness, cold, etc. JDRF launched a bold awareness campaign concerning low blood glucose and T1D…and it stings a little when I think about statistics like this.

Sleeping…it’s great!  And harmless…you would think.  For us it brings feelings that no mother would ever like to describe.  I do not like nights but I have learned to deal with them.  We do what we have to do. Kinzie cannot go to sleep with extreme highs or lows, we correct them (or make sure they are correcting) before even thinking about sleep so some days we are up late, other days we are lucky to get into bed the same time as everyone else in the house before I wake for our first check.  Her body doesn’t wake her up when she goes lows…ever.  I have caught random 30s in blood glucose levels and it is so hard to wake her up to treat them, on few occasions I was close to needing to call 911.  So I do what many other mother’s do.  I set my alarm and continue our blood glucose checks all night long.  I slept better with all 4 of my children as newborns that I do now.  I can honestly say that I love doing my nightly checks…that means I have someone to check on.  I will gladly continue to check Kinzie every single night for the rest of my life if it means keeping my daughter safe.  I can’t wait for the assistance of her diabetic alert dog…especially at night.  A little help can go a long way.  Some parents of children with T1D do not do checks at night…most I have come across do.  All I can say for my life is; I will NEVER regret doing nightly checks and they have paid off several dozens of times already. Nightly crashes happen so quickly and 1:20 type 1 diabetics will die from low blood glucose and adding Kinzie’s hypoglycemia unawareness especially at night doesn’t sit easy with me.

Again, I couldn’t imagine floating between high and low blood glucose levels on a daily basis…fighting organ damaging highs (eventually leading to death) and life threatening lows only being able to treat them with educated guesses.  We do several blood glucose checks daily…even during the night, just to maintain Kinzie’s blood glucose levels between 80-120 and the job never ends. In matter of minutes she can drop over 60 points…so being on top of our game is necessary every second.  There is never a minute of just pure easy levels.  Something is always changing our regimen and requiring us to tweak it…which your pancreas and liver do automatically.  Some people just don’t quite get the damage extreme high or low blood glucose levels can be…let alone prolonged highs and lows.  It astounds me.  Please….please….please never think you know enough when it comes to this disease if you are a parent.  I do not know half of what I should…and I know a considerable amount of information.  Not seeking information to grow and learn isn’t excusable.  Your child needs to learn how to continue to evolve their regimen, how to continue to gain knowledge and how to cope with all the changes that come with T1D care.  It is your job, you are capable of doing so…don’t ever sell yourself or your child short.  You (and your children) deserve so much more.  I have been exposed to Type 2 diabetes a lot in my life, especially as a nurse.  Since Kinzie’s diagnosis I have dedicated every single continuing education credit to diabetes, my free time reading to diabetes, I attend seminars, group functions, I am a mentor of newly diagnosed families, I advocate, so much more…all related to type 1 diabetes; and it isn’t enough.  I want to learn more.  I want to know more.  I want to be better at what I do.  I want a cure.  I want to be able to give my daughter the best chance at the most amazing quality of life ever.

It pains me to witness some children with T1D walking around without supplies, going places without knowledge of how to care for themselves fully or without notifying those around them how to care for them in case of emergencies. I see parents sending children to school without adequate supplies (and it isn’t because they don’t have the supplies, it is because they just fail to send them).  My heart continually breaks when I witness situations like this.  Type 1 diabetes isn’t like having a cut and placing a Band-Aid over it.  It isn’t like having a cold.  It is real, it can be deadly and every minute of every day can present opportunities to damage your body if you allow/choose to not participate in adequate diabetes management care which will lead to a diminished quality of life and for that matter, a shorter life.  I refuse to let that be the case.  There isn’t an excuse to not be prepared…and to me it seems like lack of education is one of the culprits here.  I see this trend taking place in just my small community and can only imagine the numbers everywhere.  I also think that this leads to misconceptions about type 1 diabetes…like it isn’t that big of a deal because there are some parents who just don’t get it which raises questions as to why it should be taken serious.

Extreme fluctuations in blood glucose levels lead to microvasular diseases which affect the heart, limbs, eyes, etc. leading to severe side effects like amputations, heart attacks, blindness, neuropathy etc, coma, and death.  I have lost so many loved ones to complications that were directly related from Type 2 Diabetes (one being one of the most amazing men I have ever known and was able to call him my grandpa.)  I refuse to let this disease have my daughters’ eyes, limbs, heart, and most importantly, her life.  I refuse to allow in any way shape or form her to be a victim from it on my watch without the biggest fight of my life. She does anything she wants to do in life, because she can; T1D won’t stop her from continuing to do so.  So when you think what I do sound so extreme…it is.  When you wonder why I act like it is life or death…it is.  When you get irritated about it being something I consume myself with…I do it because I will never regret doing what I do; but I could regret not doing what I do.

I talk about the importance of education because it is one of the most important things to me.  It is one of the leading causes of death (both type 1 and type 2 combined) and yet isn’t recognized or understood by many because type 1 only makes up about 5% of all diagnosed cases of diabetes.  As both type 1 and type 2 can be deadly…type 1 is so misrepresented.  So much more control is lost and it is treated differently and has different needs. I can honestly say that I HATE diabetes on so many days because the frustrations and fears that come with it…but other days I am just as thankful for it because it has opened my eyes and has shown me that there is so much more to life than I have ever known. Life is the sweetest gift and is full of opportunity worth taking.  Life. Is. Good…no matter what is handed to you.  I do what every other mother of a child with Type 1 Diabetes does and it is all worth every single second.   I have been able to witness tender mercies and miracles far beyond my understanding and capacity; I have been humbled in so many countless ways.  Type 1 Diabetes may be a rearranger of life exposing its ability to take life away, but it has given me reason to live and reason to fight with the pureness of love and faith. Nothing on earth is more beautiful than living the life you have been given to the fullest.  I thank the Lord to opening my eyes to that and for each breath my children are able to take and for every day we have together no matter the trials we are given.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s