I'd Rather Be a Jingle Dancer

Day 4 The Healthcare Experience
Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Oh boy.  Insurance, healthcare, insurance companies, third parties, doctors, nurses,health care advisors all seem to equal judgement.

With two Type 1s and a Type 2 in our house we have had more than our fair share of jumping through hoops for health.  When Sugar Bear was first diagnosed we had to "fight" to get enough test strips to keep him safe.  We've also dealt with running out of insulin, having the Dexcom covered for one child but not the other until further appeals (same insurance!), delayed delivery of medical supplies from the third parties, misdiagnosis of health (big one!), brush off from doctors, etc..etc..etc...And we've only been at the Type 1 diagnosis for a little over two years.

I don't know how these could all be fixed.  A dialogue is most definitely needed, starting with educating the health care professionals and doctors so that diseases are not missed and parents knowledge  and/or instincts aren't brushed off.  Insurance companies need to not be able to overrule doctor's prescriptions.  Schools need to follow doctor's orders and 504s and IEPs.  School nurses (yup, in some schools they actually have these) need to be knowledgeable and compassionate and non judgmental.  Schools need to have school nurses.  Insurance companies shouldn't dictate what kind of insulin or meter or pump one "gets" to use like it's a luxury.  Life saving supplies should never, and I mean ever, be late or denied because doing so can kill someone!  And when you see more than one healthcare professional they should all communicate with each other like a team.  You know, a team that has your best interests in mind.  The endocrinologist, the pediatrician, the GI doc, the nutrionist, the neurologist, the dentist, the psychologist, and the optometrist (all my oldest son's doctors and they are all in the same facility) should be meeting with each other to be on the same page.  It is very discouraging to take him to the pediatrician where they seem to know very little about his GERD or Type 1.

I have shed some frustrating tears and some choice words over the hoops we've jumped.  The day Drago was diagnosed the pharmacy where we get Sugar Bear's insulin didn't have insulin stocked.  It didn't have insulin!  Luckily we had some already and could drive a half hour away to another pharmacy where there was some available.  The medical world is fraught with frustrations.

We've all become hoop dancers even when we'd rather be jingle dancers.  (For those unaware, hoop and jingle are native american dances.  Google both.  They are amazing.)

Be Specific and Choose Wisely

Day 3 Prompt
There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I'm willing to bet we've all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don't care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let's explore the power of words, but please remember to keep things respectful.

It's something like 92% of those with diabetes are Type 2 and about 6-8% are Type 1.  Both have issues with their pancreas.  Both have highs and lows.  Both have the cloud of complications hanging over them.  But they are two totally different diseases with the same descriptive word, diabetes.  Words have power.  They have power to harm.  They have power to help.  And they certainly have power to confuse.

I've always been big about communication being important.  I love language, always have, but I am so tired of language being used to generalize and stereotype and judge.  And for me the worst offenders are the ones who could use their language for improvement.  My Mom always said if you don't have something nice to say then don't say anything at all.  I would add to that if you don't know what you are talking about then don't say anything or make jokes about it, especially if you are reaching a wide audience, and definitely if that joke might hurt a child.  Your words make changes happen or not happen.  And in a world where babies and children develop Type 1 the information and jokes you make might even cost someone their life.

When Drago was diagnosed he struggled emotionally.  He was 14, had watched his younger brother almost die being misdiagnosed before diagnosis as well as witnessing and care-taking the highs and lows for a year and a half.  It it him hard.  So hard we put him immediately into counseling. Counseling was terrific for him.  His counselor was also a Type 1 and there were many discussions on the power of words, everything from how to handle insensitivity of those that don't understand to how the words you choose for yourself carry a lot of weight.  For example, instead of saying "I'm going to go stab myself" when it was time for a shot (his exact phrasing) switching it to something a little less negative like "I'm going to go take my insulin" made a huge difference.  It changes your outlook.  Positivity replacing negativity was huge in helping him come to terms with his diagnosis.  That's not to say we don't joke and have some dark humor days but we see when humor is necessary and we work towards using positive words.  In our house it is "Have you checked your blood sugar?" instead of tested.  Testing for us brings anxiety and negativity.  We also tend to use "he was diagnosed with Type 1 autoimmune diabetes" versus "he is diabetic".  Why do we get so specific?  Because of the generalizations and stigmas associated with the word diabetes, that's why.  I see it regularly on people's faces when I say diabetes.  It's almost like "oh, is that all" and "what did you do to cause it" kind of look.  It's how people assume that eating too much sugar is automatically the reason.  That diet changes will make it miraculously go away.  Or that children will outgrow it.  But one of my least favorite responses "Is that the bad kind?"  Is any kind of disease a good kind?  Seriously, not cool.

So to wrap this up, sugar doesn't cause diabetes (not gestational, not MODY, not LADA, not Type 1, not Type 2, etc.....) and continuing to put it out there that it does confuses people.  It makes people brush off symptoms.  It causes children to be misdiagnosed.  Generalizing with words causes lives to be lost.  Words can hurt.  Choose wisely.

The Scream

Click for the The Other Half of Diabetes - Tuesday 5/17 Link List.
We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

Day 2 and already a little late, the story of my life.  It seems no matter how much I prepare, organize, get things ready, things slip.  It's the nature of life, and it truly is the nature of Type 1.  We talk a lot about the highs and lows and possible complications.  We talk a lot about the other autoimmune diseases that could pair up with this monster but mentally....that's a subject whispered barely audibly in a room by yourself.  Have you ever seen the Edward Munch picture The Scream?  Sometimes, many times, that is my mental state dealing with two kids with Type 1 and a hubby with Type 2.  But on the outside I smile, I stay positive, I push forward one step at a time, one breath at a time.  My husband likes to say that the boys' Type 1 is a very physically fit guy in the corner doing one-armed push-ups just waiting for you to let your guard down so he can get a good right hook into you.  Just when you think you have this all figured out he hits.  You can never let your guard down, and that is so mentally (and physically) exhausting and it contributes to guilt and worry and all those other emotions when it all catches up to you.  (And it will because no one is 100% perfect.)  And that is a recipe for burn out.  And burn out lets that guy get the upper hand.  And then those physical things we talk about become noticeable.  

When Sugar Bear was diagnosed we were given a box with info inside but on the spine of the box it said this:

So what gets me through the tough moments, what phrases or mantras do I use.....I tell myself to just breathe.  In through the nose, out through the mouth.  Positive in, negative out.  This disease is so taxing on everyone effected by it.  It's grueling.  It's a marathon and even in a marathon you have to pace yourself, stop and walk if you need to, stop and catch your breath if it all gets to be too much.  And go ahead and scream.  Let it out.  Better out than in because then you can go on.  Keep putting one step in front of the other.  Every day, every moment is a new day and a new opportunity for you to get the upper hand, for you to kick butt.  For me, some days music helps, most days humor is my best friend.  But always, always I'm reminding myself to center, to breathe, to listen and to know that this too shall pass and then it'll be the next moment, the next breath, the next step.  It's not easy, actually it's rarely easy.  If one of the boys is high, one is low, and hubby is high or maybe all three are high and I'm tired, I'm always tired, it can be an ingredient list for disaster.  This disease is emotionally draining, you have to find your recharge mine is recognizing to just breathe.

Our Experience

Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

Diabetes blog week is here!  This past year has flown by and outside of two kids still living I feel like we haven't done much.  I know we actually have it's just difficult to see exactly what sometimes.  Anyway, here's todays prompt and check in again tomorrow.  I'll be here all week!


Hmmm, what is the most important diabetes awareness message to me?  Why is it important?  What am I trying to accomplish by sharing on my blog?  I started writing this blog after Sugar Bear was diagnosed.  It originally was to help me heal emotionally.  To wrap my brain around my thoughts and try and make sense of everything.  His diagnosis was a traumatic experience.  It hurt.  We grieved.  We felt so alone and scared.  It blind-sided us and we could have easily lost him.  Many children (and adults) don't survive or don't survive intact a misdiagnosis and ensuing severe DKA.  Somehow we got lucky.  Somehow.  Somehow I got to keep my baby.  Why?  How?  These thoughts floated through my heart and brain in the weeks after our experience.  How could we have prevented what we went through?  What would it take to keep someone else experiencing what we did?  And while I was struggling with these questions and getting our feet back under us I was exploring and researching the internet and stumbled upon the diabetes online community (D.O.C.).  Wow, a club had I known existed I never would've wanted to join but so thankful they were there.  They had been where I was.  There was a well worn path.  They welcomed me and lifted me up.  I found friends.  I found people who understood.  And with it I found my voice.

I blog our experience because it is still fresh.  We haven't been at this that long.  And maybe our experience will be a lifeboat for those newly diagnosed.  And maybe our experience will educate those that know nothing or very little of this life.  And maybe our experience will change the world.  That is what I want most of all.  I don't want our community to lose another Kycie, or David, or Hailey, or Reegan from misdiagnosis.  I want awareness and education.  I want to teach and help.  I want the world at large to know this isn't caused by diet (not even sugar causes it) and that those comments hurt.  And they are misguided.  I want pediatricians to take parents seriously when they know something is wrong but because the parent doesn't have the extensive knowledge we rely on the professional to figure it out and it's not okay to tell us it's just a virus/strep/etc...because those brush offs do cause harm and in the medical world that is not okay.  I want TV shows and advertisers and journalists to get it right because the world is listening and you are educating even if it is wrong information.  I want to encourage, to educate, to advocate, and to continue to find my way because my children and yours are important.  They are our world, our future.  They deserve our best.