"Good"?

My vision was tunneling, the periphery clouding.  I had to hunch myself over a bit in an effort to avoid passing out.  I was hoping the lady would stop talking and move on.  The lady was an acquaintance-y friend of mine.  She is the mother of one of Joe's school-mates.  I had not talked to her in a couple of years.

I had just popped off a 5 mile run without hydration.  The humidity and heat were elevated.  It was on July 4th.  I ran into this acquaintance-y friend of mine on the sidewalk about a mile from my home.  About a mile from hydration!

"How's Joe?"

"He's doing well."

"How's his diabetes?"

How to answer?  How to answer?  It's good?  I mean really?  Is it ever good?  Sure.  I can smile and pretend it is all well and fine and that Joe and I just luuuuvvvvvvvv checking blood sugars, counting carbohydrates, and changing pump sites and staving off lows, while avoiding the long-term complications of highs.  The easy answer... the easy answer is just like the response we all give when someone asks how we are doing in passing.  The easy answer is "good". 

Still feeling a bit passing-out-ish...

She (Joe's~school-mate's~mother) then went onto tell me about a childhood friend of hers. She had a childhood friend.  She had Type 1 Diabetes.  She did fine through childhood...grew-up...went to college.  She came home from college for a school break (Christmas Break?  I cannot remember)...she took a nap... she never woke-up...her mother found her dead ... dead from the diabetes.

Welp.  Good to know that I don't have to go with the "good" response here. 

"How's Joe's diabetes?"

The words "good" or "bad" are too polarized.  I need something more general to describe Joe's diabetes on most days.  But then there are some days that "good" sums it up.  And then there are days that the word "bad" is perfect.

My general answer when asked "How's Joe's diabetes?" will be:

Joe's diabetes bears watching and managing; not just day-to-day, but hour-to-hour. 

In response to Joe's~school~mate's~mother about her friend:

I live with knowing that there is that possibility that I will get "the call" someday.  You know, "the call" that your son was found down and has been taken by ambulance to the hospital.  I live with being as prepared as one can be for walking in on an unconscious (or worse) Joe.  I do not live in fear.  I just simply live knowing this is my reality. 

A day-in-the-life of trying to explain being a parent of a child with Type 1 Diabetes.

I Don't Have All The Answers

"I knew about the highs and not taking care of my diabetes and losing arms and legs...but I did not realize I could feel so sick."  ~ Joe talking to me about his death~ate~a~cracker ketone sickness feeling from the other day.

"...so without insulin, would I just feel like that?  I would feel that sick until I died?"

*Uhh oh.  Not the dying business.  Please don't ask.  Please don't ask.  Please don't ask.*

"How long do ya think that would go on for?  The dying?  A year?"

*Ohhhh Man.* 

*Of course, he had to ask.*

"I dunno Joe.  Maybe a week or two?"

No one or nothing can really prepare you for all the conversations you will have with your children.  Limb loss and death have got to be amongst the toughest.  This talk of arm-less-ness and leg-less-ness and life-less-ness ("less-ness-es" added in to "lighten" the mood here) made me squirm as a parent.  What to say and how to say it; I do not know. 

Yesterday...




...Joe "raced" to CURE diabetes.

A day-in-the-life of  talking with Joe.

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.