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.

Superheroes

Drago made it to school for three days.  Today, he is once again sick.

Wednesday at work I once again got to tour the local Children's Hospital for our fundraising in May.  It made me think on so many things, from Sugar Bear's diagnosis to Bow tie Boys challenges.  I went back and reread my post "where the ceiling meets the wall".  Certain memories are engraved so deeply that even with time they don't heal completely.  I'm just grateful we survived and are surviving.

Wednesday night I started feeling crummy.  Yesterday was my day off and I spent the whole day mostly on the couch.  I feel like I have the flu.  My kitty, Ricky, took care of me all day.

It was a challenge to take care of the boys needs too.  It never stops.  Diabetes doesn't care.  Sugar Bear had a high in the 300s yesterday with ketones and Drago bottomed out with lows.  When they finally were both "stable" around 9pm I could finally sleep for an hour.  Then it was Lantus time for Sugar Bear.  And the merry go round continued.  It doesn't end and honestly i don't want it too because when it does end it'll mean either my boys have grown up and moved out and are doing this all on their own or they are gone.  Right now both of those thoughts are just not where I want to be or where I am.  Silver lining, I do what I do because I love these boys so very much.  They are my superheroes.

a poem

Eat!
Why?
Low!
So?
        I don't wanna
Ya gotta

Weak

Drago has been sick with the stomach flu for a little over a week.  Just awful.  He went back to school today but he isn't 100%.  Well, I guess, really when is he?  His immune system seems to pick up every bug going around.  He just can't seem to get a break.  The good news is the pump made his illness "easier".  It's always a balancing act and even more so when they are sick.

We got to hear Lauren Sivewright talk about her experience in the artificial pancreas trials.  It is so hopeful.  Both the boys didn't want to go, but after listening to her they were so excited.  Sugar Bear was constantly whispering in my ear about how we "have to get this", this coming from the boy who is hesitant to have devices attached to him.  But the thought of more "normalcy"....it brought tears to our eyes.  Unless you live this it is really hard to describe the invasive nature of this disease, it colors everything.

We are in full swing of fundraising for our walk.  I can't believe this will be our 5th walk for JDRF, our 3rd with two Type 1s.  Every little bit we raise goes towards these innovations like the artificial pancreas that will make my children's lives so much better.  I don't know if we'll ever see a "biological cure" but strides are happening that give me hope.  And hope is really all we have.

I don't cry as often about my boys and their disease anymore but this past week got the better of me.  Everyday is such a fight and some days it is all out war.  And sometimes we feel so alone with it.  It's hard on my relationship with my husband.  It's hard on my relationships outside of our immediate family.  And it takes a toll on all of us.  The days and nights blend together because this disease doesn't rest.  We're exhausted.  Our brains are foggy.  It is so challenging to keep functioning, to keep putting one foot in front of the other, but we do.  We have to.  I look at my boys and I see bravery, courage, determination.  They are my heroes.  There is no flinching with finger sticks.  No grimacing with injections.  And don't think for a minute these things don't hurt or you get used to it, well maybe you do somewhat.  You definitely build up scar tissue on the fingers.  Anyway, I always ask afterwards and they always give me a number on the pain scale, sometimes lower but many times 5 or above.  This disease isn't for the weak.

How long do You have to Wait

Our life always seems a bit crazy.  We have had so much going on this year that it has been challenging to stay positive and on top of things.

Besides the things I have written about, I had my own health "scare".  In January I found what I thought was a breast lump.  My family doctor referred me to a surgeon but it took until the middle of March before I could see him.  He sent me for a diagnostic mammogram and ultrasound.  It turned out the "lump" I felt was really nothing but there was a non-palpable mass elsewhere that required a biopsy.  I had my biopsy last Friday and am happy to report the mass is benign, but that waiting.....that interim between appointments and information....that was brutal.  My Mom's boyfriend of 12 years is going through colorectal cancer right now and after his surgery has found out it is worse than previously thought.  And there is so much waiting and thinking and space that it is more than challenging.

Drago started the pump this past month and that has been a whole new learning curve but is going well.  Yesterday both the boys had their lab draws and three month endo appointment.  Sugar Bear's TSH is elevated again and he has thyroid antibodies and we are once again waiting until the next appointment to do more labs.  It is just a matter of time at this point before he'll need to go on medicine for another autoimmune disease.  Good news is their HA1c's were fine and BMI's were even better.

I've gotten more involved with the research end of JDRF and even had a very bit appearance on a local TV show.  I'm constantly learning to fill up that waiting space for the cure.

There is a lot of hurry up and wait.  It's all a test of patience from a blood glucose checks that show a low and you treat and then wait, to the highs you treat and wait.  When you wait long enough you see change.  I believe the diabetes world has waited so long and is on the verge of seeing great changes.  It lets me hope while we wait.

Until next time, try and enjoy your wait.

Ripples of Joy

https://www.gofundme.com/kysgy7rg?rcid=04dd5a90e1ab11e5b263bc764e04c5a7

The joy is palpable in my house.  The last few months have been some of the hardest we've gone through since the boys' diagnosis.  Bow tie boy's news yesterday has lifted our spirits.

The post I did about the hits keep coming was about my Mom's boyfriend, he had just been diagnosed with colorectal cancer and it didn't look good.  A week ago they had a consult after more tests with a different doctor.  This doc believes he can get all the cancer in surgery without my Mom's boyfriend needing chemotherapy, radiation, or a bag.  More Hope.

These last two pieces of good news has lifted quite a bit of the weight we've been feeling.  That's not to say everything is rose colored and peachy keen, but better is better and it leads to pure joy.  And it ripples out like a pebble tossed in water.  Tears of joy are so much sweeter.

Hope feels better

Hope springs eternal.  As I was publishing my Goodbye post for our Bow tie boy, we received some hopeful news.  He is awake.  The docs have sedated him but he was tracking with his eyes.   I'm a realist and know that this doesn't mean he'll be "okay", but it is the best news possible.  Hope.  Hope feels better.

I told the boys.  My teen, who is home from school sick and headed to the doctor, smiled.  He smiled.

Hope is easier to hold.