Pigs and Seaweed and Islets, Oh My!!!

This evening I was doing a little light reading and stumbled across a link for the documentary "The Human Trial"

2013 Abelcine Documentary Grant - The Human Trial from Vox Pop Films on Vimeo.

This is monumental. Huge. Earth shaking.

I cried.

I felt hope.

I had a crazy challenging conversation with my biochemist son that went kinda like this:

Me: "Hey. This is a really big deal. Do you see that??? It is manageable and it makes sense to me, encapsulating islet cells and plastering them on the liver. Will it work? Why didn't you invent this already??"

Him: "I've been thinking since she was diagnosed that growing cells is just not that hard. Grow the islet cells and reverse the disease. Easy, right? But the trick is in protecting them from whatever nasty thing is in her body that attacks them. You can grow islet cells all day long and keep them alive.... but you can't stop the body from attacking them. It's why you can't cure autoimmune diseases."

Me: "These guys are saying that they are harvesting seaweed to encapsulate the cells to keep that from happening...."

Him: < ten minutes of highly animated scientific jargon, fingers furiously clicking phone for links to scientific journals, exclamations of why this is wonderful, brilliant, should really truly work....ending with a commtitment to check out the journal articles Monday that are published by these research teams>

Me: " so. That good, huh? "

The girl walks in the room.

Her: "What are you looking at? Why is Zach on hyperdrive? Did he cure cancer? "

Us: " Well. There seems to be a human trial coming up in 2014 involving something called an islet sheet. It involves living islet cells encapsulated in a algae polymer that could potentially act as a living pancreas in Type ones...."

Her: "Hmmmm. Is it a patch on the outside? or does it require surgery?"

And the conversation got less exciting and more science-y from there. Life in this house involves a lot of science nerd speak. The allograft is working in diabetic pigs.

Interesting footnote. The girl works at a vet clinic, as her life passion at one point was to become a vet. Our little corner of the world has an unexplained and inordinately high number of dogs and cats developing diabetes. Dogs and cats don't really have unhealthy lifestyle choices...so the assumption is that the mechanism is sympathetic with T1D. Alarming enough that Ohio State Vet school has flagged the situation and is beginning to collect data.
Weird humor. My girl is a genius at calculating insulin dosages for big dogs that come through the clinic.....because they parallel her own. There is a lot to learn here...and potentially more info regarding the environmental triggers that may incite the disease.

Another interesting footnote. The biochemist is all atwitter about the potential applications of the algae based polymer that is being used for encapsulation. He believes it could be a key factor in stopping transplant rejection theoretically.

Yep. That was our Saturday night.

Theoretically? I'm tired. I don't understand half of what gets said in this house, but I smile and nod and ask good questions. But more than that? I feel a tiny crack in the iceberg of "lifetime sentence" and feel a tiny glimmer of hope that needles, tubing, monitors and lancets might simply be words Hannah uses to tell her babies and grandbabies about the few years she had to live with them as part of her daily fight to stay alive.....because they will simply be a thing of the past.

Kind of like me, trying to explain to my kids how I did research before the internet.....

Comfortably Numb....

O.K.
Just a little pinprick.
There'll be no more aaaaaaaaah!
But you may feel a little sick.
Can you stand up?
I do believe it's working, good.
That'll keep you going through the show
Come on it's time to go.

There is no pain you are receding
A distant ship, smoke on the horizon.
You are only coming through in waves.
Your lips move but I can't hear what you're saying.
When I was a child
I caught a fleeting glimpse
Out of the corner of my eye.
I turned to look but it was gone
I cannot put my finger on it now
The child is grown,
The dream is gone.
I have become comfortably numb.



Nothing like some Pink Floyd lyrics to succinctly say exactly how you're feeling.

I want my life back.

I want Hannah's life back. I would love nothing more than to rewind the clock by eighteen months ( or a few years) and rewrite how this thing goes down.

It seems like so many unexpected turns have culminated in such a way that we focus only on diabetes.....or the things that are going wrong in the life of a houseful of teenagers...

I kinda long for the days of skinned knees, Rocket Power on Nickelodeon, dirty faces and the kind of innocence that defies the circumstances of real life, growing up, and chronic disease. I'd like a do-over.


In reality, I have a lot to be thankful for. The good Christian girl in me feels compelled to make sure every reader knows that I trust God, believe in His sovereignty and knows that all things work together for good for them that love the Lord and are called according to His purpose.

All of the above is true. I do believe that.

But my feelings?? Meh.

We have had a victory this week. I'll spare my girl the details of having her life played out on the internet, but its the kind of victory that is monumental and enormous for us.......but just a stinking normal, irritating event in the lives of pretty much everyone on the planet.

It's great to be able to rejoice when things go like they are supposed to go. However, the contrast over what we get excited about compared to every other seventeen year old girl and her mom on the planet kind of stinks today.

Can I be that honest?

I can.



I rearranged the entire house this week. In huge ways. I'm working on a curriculum idea for publication, researching colleges and degree options for everyone I know, finishing remodeling the kitchen with the hubs and toying with the idea of writing a bible study.......all in the name of clinging to my sanity over the things I can't control.

I could write on and on about the freaking continuous monitor.
I could talk ad nauseum about the worries and fears of three kids figuring out college plans and a fourth being courted by grad schools. Seriously. What does a homeschool mom do when all four of her children move out the same summer?? Somebody tell me.

The reality is, I am tired of feeling sad. Scared. Worried. Fretful. I know that the biblically correct answer is that I should rejoice in trials and count it all joy, and yada yada yada.

I know.
But really, I'm just tired of feeling all of those feelings. I could use a cold drink and a book in my hand on a Carolina beach with a soundtrack bumping in the background and the comforting roar of the ocean....or a roomful of crazy friends who make me laugh until I cry. I want to feel. I just don't want to feel what I'm feeling.

I don't want to be comfortably numb.

Setting the Curve

A week ago we were filled with anxiety, dreading Monday and the insertion of the Dexcom. Seriously. The weekend was not fun.

What a difference a week makes. While Hannah is not 100% sure about the CGM, especially the removal and reinsertion, she is amazed by the info we have gained that we couldn't have known without it.

It makes me wonder how PWD did it back in the dark ages when all you could do was pee on a stick and guess how much insulin you needed to inject. Mind blown over how technology can give us the tools to learn and tweak the dosage schedule to gain control over the invisible monster.

Zach ( Hannah's oldest brother, a biochem major at Marietta College, for those of you who don't know us in real life;) ) just finished a pharmacokinetics course in a toxicology class he is taking and it explained the process of micro-bolusing the dosages of medication in order to utilize them most effectively...he even drew us pictures. Those of you know know Zach have no problem imagining this process, right?

The crazy cool real life application is that by the changes we are making, we've watched Hannah's mountain range graph settle into a pretty little sine wave, for the most part.

That being said, we have learned that she was in trouble in the night, perhaps for a year or more. While this makes me very sad, I am excited to know we are on it now and the adaptations are effective.

In the week she has used the CGM, she has dropped her average bg by 20 points, putting into the range that will keep her a1C right where she wants it. We are rejoicing over that little victory....in one week's time.

The thing that people who don't dance with T1D every day don't know, is that there is no ' hey, whatever. We'll just wait and see what happens". No, if you are a PWD dealing with type one, especially a woman, particularly a young woman, you have to simultaneously live with hyperawareness of each moment while meticulously planning ten years in the future.

Most teenagers are worried about what they're going to be doing next weekend, or if they are long range planners, where they are going to college and what their major will be...a t1D kid is fretting all of those things as well as preparing physiologically for future babies and jobs with a health insurance plan that will cover the things that are required for them to stay alive. On some days it is a challenge to feel like a seventeen year old instead of a 45 year old.

While a pump is still not on the agenda, the CGM seems to be a welcome addition to the daily arsenal in our war. There is still anxiety over reinsertion here at home....


Let me be real here, for a moment.

This grind is scary. I cheerlead and praise and encourage....

and I cry, and pray and rant, too.

The Dexcom sensor inserter looks like a mini cookie press

When the FedEx guy showed up at our door with a box of these, we put them on the dining room table and looked at them without touching them for a good long while.
Nobody signs up for injecting a 2.5 inch needle into their stomach to thread a plastic catheter in for keeps, and then pull it back out again. Can't even grit your teeth and do it quickly, at least at the onset.

And then, you get to do it all over again next week, same time, same channel.

So. If you think of us come Monday morning, say a prayer for peace, calm nerves and encouragement. Because we are such newbies at this game. We talk a good game, put our game faces on and do what must be done. But when no one else is around??? We are afraid.

Just sayin'.

This is freaking hard. Scary. Overwhelming. Frustrating.

But it is also helpful and will hopefully enable a lifetime full of health and joy and dreams come true.

Liar, liar carbs on fire

Well, the technology lies.


I knew this was the case, but it is fast becoming a juggling act to trust when to outthink the nifty little receiver that keeps flashing numbers and warning signs.


Last night was an experiment and like any good scientists, we only changed one variable by a very minute amount. Boy, did we get results.
By reversing some advice we were given by an old NP ( I'm not throwin' stones.....I'm just sayin'...you learn to roll with your own hunches and observations on this grind...) we were able to drop the notorious hidden nighttime high curve by 100 points.

100 points, people. That is huge. It was a good discovery.

However, now we have an echo on the other side. With type 1 , its like living the butterfly effect in your own skin every day of your life. One little tweak and the domino effect has to be chased for potentially days. Its why Han chooses to forgo cake. Yes, she is "allowed" to have it, but is it worth the rollercoaster of highs and lows that it causes? I digress.


So the night time numbers snapped into shape, there was a little dip in the early morning and the day started off looking like the golden zone. Good feeling!!!


Until we got to the dentist office in the middle of nowhere and the crash started....and the girl left her glucose tabs at home and only had three crackers in her purse. The dentist might have a treasure chest full of toys at the front door, but do you know what they DON'T keep on hand? Candy, soda and sugary treats, or other refined carbohydrates that could stop a slump mid-slide! So. We mad dashed to dollar general to buy gummy snacks ( after a sermon on always being prepared....some teenagers get reamed for breaking curfew, some get reamed for inappropriate texting, some get reamed for being belligerent, my girl gets reamed for not keeping candy on her at ALL TIMES).


Here's the fun part. I'm afraid of the dentist. Terrified is an understatement. It is totally irrational and the fam knows that it took some serious big girl panty wearing for me to just get on with it. I can't tell you how often I think to myself " If Han can do xyz every day, what is my problem? Get it together, woman!!" So. I got it together.

Point being, I am in the chair and Hannah does not want to interrupt the process by alarming me that her nifty new monitor is indicating that she is in the danger zone. Big time. So. Gummy bears for the win. Except the monitor did not respond....and the BG dropped even lower. What do you do? Eat more gummy bears.


By the time I realized she was in panic mode, there was an overcorrection and a bounce. IT is virtually impossible to go low without swinging high, but we are trying.
So I talked her through it and explained how she needed to be patient and wait for the rise instead of panicking. ( Because if you know me, I never panic...right??? Right???? Bahahaha)


Fast forward to her varsity volleyball practice today. The alarm went off, with two flashing arrows pointing straight down, indicating a rapid and increasing drop. Full blown panic!! I broke into the snack bar ( not really. I promise.) pushed the gummy bears, kept dropping. Kept flashing. Repetitive flashes and beeps induce more panic.Even in people who don't panic.


Pushed a can of soda. No turn around.


Guess what? Same story. Over correction. By the time she was serving again she was approaching the upper limit of her happy place with an arrow pointing straight up.



Silver lining?? The girls ended up having to run eight laps today...which compensated for the over-correction. Ahem. That I panicked and caused after sermonizing earlier.

Moral of the story? The new technology lies... but so did the old...and both are better than not having a clue.



It has to stink to be my kid on a semi-regular basis. I am a pain in the keister on a good day. It has to really stink to be my kid if you're T1D...because I go into full blown panic mode and make life harder.


Thank God my girl is full of grace....and has a sense of humor....and doesn't hold my flaws against me.

Dexcom, how do I love Thee? I'm not really sure....

We have arrived at a fork in the road on the T1D journey. Constant Glucose Monitoring. The Dexcom G4 was inserted a mere 48 hours ago and I feel like its diagnosis week, all over again.



Hannah was diagnosed with Type 1 two weeks before her sixteenth birthday, seventeen months ago. I had ignored some pretty big symptoms that I had justified as being attributed to her training for an upcoming Warrior Dash. Her story is remarkable...to me. I expect everyone thinks their own story is remarkable. But suffice it to say we found out she had diabetes when she was admitted to critical care in an advanced stage of diabetic ketoacidosis. Our learning curve was a vertical line. We tackled T1D like bosses and thought we could control it by sheer force of will---hers to force her blood glucose to obey her stringent discipline. Mine to aggressively research and parent and understand. We refused to acknowledge the concept of a "honeymoon stage" and were sure we were straight A T1D patient and mama.




Yeah.


Because when the bottom drops out and you're terrified, sometimes a little control feels like you won't completely lose it.


It has been a pretty good first year and a half, as far as life-altering diagnoses go. She has maintained good control, a pretty solid a1C and a keen understanding of carb counting and insulin dosing. She is unique for a teenager because she adamantly refuses the use of a pump. I get it. I support her. It is her body, her disease, her sanity, her need for autonomy and her choice to give up to six injections a day instead of being constantly tethered to an external insulin pump. The way I see it, is its like choosing between a snake or a porcupine. Neither is something you really want, so if the choice is forced on you, you go with whatever makes you less miserable.



All cynicism aside, Hannah isn't miserable. She is amazing and fierce and strong and brave and is determined to deal with T1D on her own terms. I admire that in her. If she weren't managing this beast, we would talk about a pump. If I thought she'd have significantly better control using a pump, we'd talk. If there comes a time that it seems like the pens aren't working for her, we will revisit the subject. But for now, I get it.



Which brings me to the point of this post. Constant Glucose Monitoring. What a wonderful, terrible thing.



Equivalent to 280 fingerpricks in a 24 hour period, the CGM is giving us a ton of information. For a couple of perfectionistic, obsessive, over-achieving women, that much information is akin to short-circuiting the brain. It is overwhelming to take in the graph of highs and lows as we initially get started using this process.



The rock solid data we were relying on from four to five finger sticks daily was a liar....in some ways. Like only having 5 points on an intricate connect-the-dots design. There were so many missing puzzle pieces.



She has worn the monitor for two days. The insertion was a triumph in and of itself, and probably fodder for another post at some point. The calibration was nerve-wracking, as there was a moment or two of sheer panic after a low seemingly didn't respond. The multiple finger pricks each day that are supposed to be less frequent are actually amplified right now, as we calibrate and double check. There are missing puzzle pieces that will require tweaking for the first time in a long time to try to mitigate some problems in the night.



There is more frustration and fear and overwhelm than victory today. But that is today and tomorrow is another day.


Knowledge is power.



Hopefully the knowledge she gains from the steady stream of information about what is going on in her cells at any given time will empower her to refine her regimen. I'm hoping she gets a silver lining out of this one....like an indicator that frozen yogurt makes her settle in at a golden 115 and never fluctuate, because I think she deserves a win.




Either way, its a new tool in the arsenal for fighting the invisible monster at the door. I'm praying that it allows her more freedom than bondage. That remains to be seen, but for now, I will trust that it will.