Not the "Cure" I Would Want for Him

Joe ran up to me, as we were leaving his track meet yesterday.  An excited  "Mom, I just met a man who said he 'used to have diabetes'".

I looked directly at Joe .."What?"

"Yea, he saw my pump and then told me."

My head did a subtle side-to-side shake.  My mind then went to the word "whack-a-doodle".  I was worried Joe had ran into someone who gave him false hope; someone who was telling him a tale about a Dr. MoonLoveJoy who cured his diabetes with a rainbow, sparkling with unicorn horn dust.

"Joe, don't believe it.  Whatever he told you isn't true.  There's not a cure for type 1."

"He said he got a kidney-pancreas transplant."

Oh.  Now.  This changed everything.  "Yes, then yes.. he is technically cured.  But ... Joe ... that isn't the way you want to get a cure ... by having your kidneys .. fail."

Joe and I talked more about transplants.  I used to take care of  kidney transplants post-op.  Typically, a pancreas transplant takes place in a person with severe t1d who is also in need of a kidney transplant. The transplanted organs require life-long use of anti-rejection medications.

"So, you don't typically see a person just receive a pancreas transplant."

"I know mom ... I wouldn't just get one for sh*#'s and gigs."

Ha!  "No Joe, you wouldn't just go get one for the heck of it.  Anti-rejection drugs can have some serious side effects."

As we drove home, we talked more about kidney failure.  It's been years now.  Years, since I've thought of this manifestation of poorly controlled t1d.

A day-in-the-life of talking organ transplants with my 13 year old.

No Boluses

Last night...

In our kitchen...after dinner...Joe with a smidge of a smudge of Ranch Dressing on his cute chin...

Somewhat outta the blue...

Joe:  "So I would die without Insulin?"

Me:  "Yeah...not immediately ... but eventually..."

* (uhhh ... ...  would it take days?  weeks?  I hope he doesn't ask.. please don't ask...please don't ask) *

Joe:  "So, before Insulin was invented people with Type 1 Diabetes died?"

* (thank you ... ... not asking... not asking) *

Me:  "Yes, they would."

* (I will not go into the uplifting "Death By Starvation, Dehydration, and Acid-ation" talk right now) *

Joe:  "Gosh, I just want Diabetes to be CURED."

Me:  "Can you even begin to imagine? A CURE?"

Joe:  With eyes wide and a smile tweaking his lips "No boluses, only checking!!"

It is here where my heart broke a bit.  I am not sure if it is the way his face lit up when he said it or if it was the fact that taking away just one portion of the care was a CURE to Joe. 

Conversations with Joe during our day-in-the-life of living with Type 1 Diabetes.

Not Even Close...

As my "network" of "D" friends expands, I am increasingly aware of type 1 deaths, diagnoses, and hospital admissions from low induced seizures and loss of consciousness. With each incident, I mutter sadly, quietly, and angrily, and pissed-offly in my head "yet one more reason why Insulin is not a CURE."

I pratically spit it, the statement.

I do.

Type 1 Diabetes is difficult, at best, to manage. It does not lend itself to being "controlled". It can kill. The medication used to treat type 1 Diabetes is insulin.

Insulin is a hormone.

Insulin can be deadly if too large of a dose is given. Insulin can cause seizures, coma, and even death. Insulin is the only treatment for type 1 diabetes. Without insulin, persons with type 1 diabetes die.

Diabetes affects EVERY organ system in a persons body. These people look totally "normal" from the outside, while this disease wreaks havoc on their vasculature and organs. Insulin is needed, not only as life support, but to temper the effects of high blood sugars on tissues, vessels, and organs.

Insulin is not a cure. It never will be.

It cannot be taken orally.

The acidity of the stomach destroys the proteins that "make-up" insulin and, consequently, render it useless. Insulin must be injected with a needle. It is give subcutaneously several times daily. It is give with food. It is given with high blood sugars. It is given as "basal", a maintenance dose so-to-speak. This, my friends, is no CURE.

Insulin must be administered to keep persons with type 1 diabetes alive. Without it, they would die. Prior to 1921, the year exogenous insulin was produced/discovered, a person with type 1 diabetes would die a death of "starvation," as their cells would be unable to utilize glucose as an energy source. The death was described as painful and agonizing and miserable between the unquenched thirst, the continual flow of urine, and the insatiable hunger ... to no end... well, there would be an end ... The End. "Life Support", it is. Again, A CURE, it is not.

Dosing is not simple. It is complicated.

It is not a medication where you can just "dose it" and "forget it". You administer it, you check on the effectiveness of that dose a couple of hours later by checking a blood sugar level. Needle after needle after needle is the life of a type 1 diabetic... around the clock ... hour to hour. Insulin is not a CURE.

The balance required in dosing insulin is tenuous.

If you give too much it can induce a low blood sugar reaction called "hypoglycemia" or an "insulin reaction". A low blood sugar is an immediate emergency and must be dealt with promptly. It can occur at any time. A low blood sugar can lead to seizures, coma, and/or death.

AND...

If you don't receive enough insulin over the course of several hours you can end up in Diabetic Ketoacidosis; this is a life threatening condition that requires medical attention immediately.

AND...

Finally there are the reasons we all do that we do. The reasons, and the list is long, as to why we attempt to keep "tight" control of blood sugars... the long term effects of diabetes... the "complications". High blood sugar levels affect blood vessels, organs, and nerves throughout the body. Retinopathy, neuropathy, nephropathy, and all the fucking "opathies" along with cardiac disease, peripheral vascular disease, and dislipidemias...and on and on ... are but a few of the consequences of diabetes. A CURE? Definitely not. Period.

Too much Insulin.... you fall victim to a low. Too little ... you are stuck chasing down a high. Not a CURE.

Activity, monthly cycles, stress levels, environmental temperatures, illnesses, and growth spurts must all be accounted for when administering insulin. Blood sugars are affected by all of these factors and by oh, oh ... so much more. Insulin is far from a CURE.

Insulin is not a CURE.

A CURE it is not.

A day-in-the-life of gratitude for Insulin .... yet hoping for a less laborious treatment regimen for type 1 diabetes. A CURE, this is not.

Something Different For Everyone

"Bridget that will not cure it!"

I was mascara-ing my lashes with the oscillating-wanded Lancome black inky goodness and thought I heard some "scuttle-butt" from my two little trolls.

"It is worth a try Joe..." Bridget's response to Joe's outburst was heard over the mascara wand vibrations.

At this point, I was then "lashed-out" and ready for my day. I came out of the master bedroom to find out what was going on. Joe looked plussed. I asked Joe what he was upset about. He responded that Bridget thinks she can cure diabetes. He was not in like mind and he didn't seem amused that "the cure" was being taken on by his 9 year old sister. This is big shit! The cure. I am sure it was a little insulting to Joe that his sister thinks she can figure it out when world-renowned researchers are left empty-handed. To think his ass has been a giant (he got my butt genes) pin cushion for the past 4 years...not to mention his calloused fingers... the lows... the highs... the restrictions... the stares... the regimen... the routine... the neverending-ness of it all has been going on and on and on... and his sister now has the answer! His 9 year old sister has it all "figured out" between reading Harry Potter books and watching Phineas and Ferb! I guess he must have felt jipped somewhat.

Then...

Bridget kindly takes over the conversation (she got my gabby genes) to speak her "peace". She emphatically stated that she thought that microscopic analysis of the melted snow from Joe's boot would hold the answers that we were seeking. She went on to explain that maybe the scientists had it all wrong. "The cure" is perhaps different for each person with diabetes. What if diabetes could be cured by what people love? Joe loves to ice skate. Snow and ice should cure Joe. "Cure it, diabetes, with what they, the persons with diabetes, enjoy and love the most" is Bridget's current hypothesis. Pure. Beautiful. Deep. I get it.

And, again...

No, I am not making this shit up. She even stained the melted boot snow with Methylene Blue!

We have TWO days to fill up the Diabetes Research Institute's "Be Part Of The Cure" banner. Joe is on the right side of the "U" (about mid way up).


A day-in-the-life of the dreaming of, the supporting of, and the talking of the elusive cure.

Related Links:

Magic (Joe's wish from Santa...a CURE)

Envision The Positive (my view on "hope")

MAGIC

The end of a medical condition.

To be healed.

The elusive CURE.

Joe was going through his "Santa wish list" the other morning while I was driving him to school. Many of his wish items weren't a surprise to me. Balls, pucks, sticks, nets, another marble run set, books, etc. came rattling off his tongue. He was contemplating how Santa made all of the toys, how he obtained plastic, how he assembled them. He then started talking about Santa's "magic" and how Santa can "magically" obtain those "hard to get items" or those items you thought were spatially impossible to load on the sleigh, or cram through the chimney, or to position in your home.

As Joe is just yammering on and on and on about Santa, I am listening. I am trying to take note of any items that are "must haves" from Santa. To be honest, I am also thinking a "for f*ck-sake it is the day after Halloween dude and already we are moving onto Christmas?". My profane thought feed sequence was then abruptly stopped, when I heard Joe continue to talk about Santa's "magic" and his biggest "wish" was for a CURE. And. He thought maybe, just maybe, Santa could pull that off. A CURE.

*Gulp*

*Big Swallow*

In the four years since Joe has had Type 1 I have always been very cautious in this territory. The "Cure Territory" is dangerous I think. Have we participated in JDRF WALKS? Sure, absolutely, whole-heartedly. My husband has chaired two of them. Our family has volunteered our time to help organize three of them. We have assembled large teams. We have raised, thanks to our friends and family, tens of thousands of dollars over the years to help "fund a CURE". I have always been careful in what I say around Joe during the fundraising, the letter writing, the Walk Kick-Off Luncheon, and in general about a CURE. You see, I have never wanted him to think there is anything "wrong" with him per see. I have never wanted him to think something about him must be changed or fixed to make him "right". I have never wanted him to count on a CURE in his lifetime. I don't want him to be disappointed.

My hope flickers like a candle in the wind. Sometimes it burns strong when the wind lets up a bit, but for the most part it is a slow, barely visible burn. I have posted on my hope for a CURE. Here is part of what I had to say...

....I think "hope" means different things to each of us. It is a personal thing
to choose to have hope, what one is going to have hope for, and if they are
satisfied with the journey of having hope.

For one to have hope they need to be able to envision positive outcomes and
they can even see the pathways in which what is "hoped for" is achieved. Many
persons with diabetes have said to me that they have been "promised" a cure for
years. "A cure is just 5, 10, 15 years away". Years and decades come and go, yet still "the cure" eludes medical researchers.

I look at the path of hope and the path to a cure as a "stairway". You
need to have your footing on each step to progress to the top, to your
destination. With each discovery regarding type 1 treatment, with each finding
of a new technology, with each failed "cure" scratched off the list of what
researchers are currently working on we take a "step" up the "stairway" of hope;
up the "stairway" toward a cure....

So, back to my dear Joe. He is practical. He is mature in many ways beyond his years. I think in his heart of hearts he knows there is no way that even Santa can muster up a CURE. But, together, someday, sometime, maybe not in my lifetime, possibly not in Joe's lifetime, but in future generations perhaps the elusive CURE will be found. In the meantime, we must all work our way up the "stairway" one step at a time. Research must be funded; potential CURES investigated; failed theories crossed off the list; new hypotheses studied; more trials conducted. Each trial, each tribulation, each setback is a step in the right direction.

So, after I visited Karen's Bitter-Sweet yesterday I asked Joe's permission to place his picture and his story on the Diabetes Research Institute's Banner for a CURE. Joe was "in" on that action.

Here is the photo with what Joe wanted me to type.. Go check it out.

A day-in-the-life of working and hoping our way up the "stairway" to a CURE. To "magic".