Thursday, January 26, 2017

Contemplation

You know how it feels when you have a tiny itty bitty pebble inside your shoe?  You can't take the shoe off yet so as you walk you squish your foot around hoping to move that annoying piece away from the most delicate parts of your foot but it keeps moving anyway.  It might cause some bruising and maybe even a cut or blister that could lead to infection.  It always causes some sharp pain here and there and definitely is distracting.  But what a relief it is when you finally get to take your shoe off and remove the tiniest sedimentary fragment you've ever seen.  It might even make you think of the Princess and the Pea.  Maybe you'll admonish yourself for being so sensitive.  Maybe you won't even give it a second thought.  We'd like to remove the pebble from our shoes, please.  The longer it moves around in there the more likely it is to cause issues.  That is diabetes, Type 1 and Type 2.  And we need a cure.

Autoimmune:  your own body decides to attack itself but it's not like a dog chasing his tail, real damage happens.  Organs no longer have the ability to function the way they are supposed to.  Both boys lost their beta cells in their pancreas, the ones that produced insulin.  (Type 1 Diabetes)  Both boys are losing pigment in their skin. (Vitiligo)   Drago has also been diagnosed with G.E.R.D. (Gastroesophageal reflux disease) and Gastropareisis (delayed emptying of the stomach).  And Sugar Bear's thyroid has been under attack for a year from his own body (Hashimoto's) and has just lost the war (hypothyroidism).  Today at our endo appointment we found out that his TSH level was 16!  (Normal is around 3).  Today he'll start taking more medicine he'll have to take for the rest of his life. I got tears in my eyes but my Sugar Bear said "I was just wondering when I was going to have to start taking medicine for that.  At least it's not a needle. I can just make it a habit."  A lifetime.  A pebble.

Looking at my posts last year, I noticed that my last in October was just a sort of summation.  It really didn't say much.  I have so little time anymore.  The end of October had us visiting an art museum to see a Van Gogh exhibit with my Mom while my husband was in New York for his Uncle's funeral.  And it was also Halloween.  We didn't go Trick or Treating for the very first time this year.  Sugar Bear decided he wanted to hand out candy instead.  My boys are growing up so fast!  A blink and they are both young men.

In November I had to give CPR to a neighbor that unfortunately didn't make it.  It threw my world into a bit of a spin.  I still went to the JDRF summit but was in a state of shock, it wasn't the refuel it usually is and that I needed.  We had a very quiet Thanksgiving at home.  Drago had decided that Thanksgiving is just too many carbs and makes him feel awful.  We also had another EGD done on him that showed GERD is still an issue and added Gastropareisis to his growing lists of diagnoses.  Stomach issue and diabetes are not friends, it makes everything even more unpredictable.

And December had me at the JDRF awards as well as having a quiet holiday at home.  We like quiet. It lets us relax as much as we can.

This month has had us doing some new things.  Sugar Bear has started on the Omnipod pump, just in time for his 12th birthday!   He has only been at it for a little less than two weeks but he loves it.  He has been amazing with it.  Even wearing it on his legs and belly.  Every day he impresses me.

The company I work for had our employee party this month and for the very first time since diagnosis (3 years) someone besides family (hubby's parents or my Mom) or diabetes camp had the boys over so we could go out without too much worry.  It was so freeing!  Every once in awhile you forget about that pebble and it almost reminds you of how it would feel to take the shoe off.

So back to the endo appointment today.  We love our endocrinologist.  We love our nurse.  We have some work to do with Sugar Bear, his A1c is the highest it has been since diagnosis, of course he's been sick with strep recently, but still.  Drago's A1c is still fantastic.  Both boys have areas to improve, who doesn't.  And we were almost out of the appointment when our Doctor got the thyroid test results.  I don't know why it took my breath away.  It's not like I didn't know it was coming or that we can't handle it.  I think it's like that pebble, it hit a soft spot.  Another precious organ lost the battle.









Tuesday, October 18, 2016

Keenly Exquisite

I've let three months go with no explanation.  I always have thoughts about what I could blog.  My brain is always churning.  Motivation is there but follow through has been crap.  In a vague summary of our life these last three months in one word--exquisite.

July--the boys went to diabetes camp for the second year.  They even had a better time than last year but Sugar Bear unequivocally said he will not return.  He followed it up with "If I say I want to go you should check my sugar 'cause I'm probably low."
August found us starting online school for both boys.  So far, this has been a big success.


September my husband and I celebrated 19 years together and I did an interview with Juicebox podcast that will be posted when he releases it.  And Drago turned 16 and will be getting his learner's permit soon.  I already have more gray hair.




October found me getting more shots for my four crapping back discs.  And we had our most successful walk in our hometown.  We raised almost $10,000 in great part to my in-laws who came and walked with us.  We had our biggest team--17!  Of course hubby didn't get to walk and Sugar Bear took a nasty fall on hard concrete before the walk and was devastated he couldn't participate due to his injured knee.





We also had an endo appointment in July (best yet) and October (worst so far).

And through it all diabetes weaves.  Missed lantus doses, too much insulin, activities, stress, illness, and all.  It never sleeps.



T1D is exquisite.

Monday, July 18, 2016

Connecting

Another JDRF walk done.  More funds raised for tools and research on cures and prevention.  More people than I've ever seen at one of these events confirming we really are not alone in this.  There are many times, more than I'd like to think about, where we feel so alone and adrift with this disease in our two boys.  The severe persistent lows, the highs that seem to last so long, the illnesses that make managing even more challenging, they all make us feel like we're in the middle of that ocean by ourselves but we really aren't!  That is such a good feeling, to know that this community is there, that we have a family that gets it, that we have friends for support.

This year my Mom walked with us for a second time and the rest of the team was made up the four of us and of people who had never walked--another Type 1 Mom, her Type 1 son my youngest met at Diabetes Camp last year, and a coworker of mine.  Not a large team but we had a blast!  It rained during the walk, but that didn't deter us.  Honestly, I think it was the best walk yet.  And afterwards, Sugar Bear, his friend from camp, his Mom, and myself stayed to play at the park.  Hubby and the teen and my Mom headed home.

Playing at the park was fun and we stayed a lot longer than we have previously.  Sugar Bear loves the bumper cars and rode them over and over and over again.  We didn't really ride the big rides this time which was fine with me.  (My back can't really handle that anymore.)  And of course Sugar Bear's dexcom fell off so we sort of flew blind which ended up having him have a pretty severe hyperglycemic moment.  But it's all a balance.