Beta's Last Stand

March 13, 2013

Beta’s Last Stand

I’m fightin’ here.  This time, not to bring a nasty blood sugar down, but to keep one up!  It’s equally frustrating and terrifying, but at the opposite end of the spectrum.  You see….high blood sugars cause damage over the long-term, have long-term complications and consequences.  And, each time I see one, I worry what damage is occurring.  But, low blood sugars can have immediate short-term complications:  Loss of consciousness, seizures, no fuel for the brain, etc.  You know?... fun stuff!  There’s more urgency to amend the situation.

Refresher for non-diabetic folks:  When a person develops Type One Diabetes, his or her body attacks the beta cells of the pancreas, which are responsible for making insulin, and kills them off.  For the first few months to 2 years, a newly diagnosed patient is considered in the “honeymoon phase” of the disease.  This means, all those antibodies aren’t done working yet.  They haven’t killed ALL the beta cells, just most.  The ones that remain continue to function.  Like a bench-warmer, they jump in the game sometimes.  Eventually, the autoimmune antibodies will win the war and kill them all off.  In the meantime, the battle ensues.

My twin son, Asa, was diagnosed 5 months after his twin brother.  Asa was diagnosed in August of 2012.  Since it’s only been 6 months, he’s still in his “honeymoon” phase of the disease, but with all THREE antibodies attacking his pancreas beta cells (most kids only have 1-2), he’s rapidly leaving this phase.  His insulin requirements are rising on a regular basis.

It seems the last 5-7 days Asa’s last remaining beta cells have decided to launch an offensive.  They are fighting for their lives, but like Custer and his troops, they are being and will be annihilated eventually.  They’re doomed.  (Oh, the thought of knowing something inside my baby’s body is DYING is just SO comforting and heart-warming). I have affectionately named Asa’s last five beta cells Larry, Moe, Curly, Alfalfa and Buckwheat.  The “boys” are cranking out insulin right now with all their might.  They don’t understand it’s an exercise in futility, and eventually the Anti-Islet Cell, GADA, and the Insulin Autoantibodies tribes will defeat them in this autoimmune siege at the Battle of Little Pancreas.

Larry, Moe, Curly, Alfalfa and Buckwheat have caused mayhem!  10 days ago, with average blood sugar numbers climbing, I did a basal test.  We marginally (MARGINALLY, only like 0.05 units per hour difference) changed Asa’s basal rates (that’s the insulin that infuses continually so that his organs have enough insulin to function).  We looked good the first two days after the change.  Then…BAM!!  Stumbling, dropping, falling off a bride with no bungee cord attached.  Usually, a 10-20g carbohydrate snack elevates the blood sugar back to a normal range.  With Buckwheat and company participating, nothing that usually works is working.  These inadequate bench warmers just really aren’t as good as the starting line-up.

March 11:

Time	Blood Sugar	Action/Comment
0830	48	15g free
0900	76	37g, covered with insulin
1000	41	15g free
1100	51	10g free
Noon	72	10g free, 40g covered
1300	45	15g free

 

NOW?  NOW you want to show up and work? For FIVE MONTHs, I’ve been working with very little help from these nincompoops, and now they want to wreak havoc on the routine!  They clearly are not following the rules. It’s been much of the same since.  These guys are acting like your dying relative who has that one last blast of energy before the end comes.  Everyone thinks, “He’s doing so well today” and the next day it’s over.

March 12, I dropped his day time basal rate to LESS than what it was before we changed it on March 7. 

Time	Blood Sugar	Action	Comments
Noon	46	30g free	That should fix it, right?
1230	47	15g free	Yeah, joke’s on me!
1300	50	20g free	Larry, SIT DOWN and let the experts work, please?!
1400	69	10g free	I’m starting to think I want the tribes to win!
1600	70	Early dinner with free carbs and insulin	Does that make me a traitor?
2000	104		Can I get some rest now?

 

 

If I were to feed myself as much as I’m pouring into the kid just to keep his blood sugar up, I’d have gained 10 pounds already!

So, March 13, we go to Six Flags for my other son’s birthday.  Since activity lowers blood sugar, I TURNED OFF his basal insulin.  OFF…getting NO insulin!  I raised his meal insulin-to-carb ratio to 1:15, which he was using in December!  He only got insulin for meals….and less so than usual. Here’s how his day went:

Time	Blood Sugar	Action	Comments
0900	51	15g free, 25 covered	This is what sleeping late does for you
1100	59	15g free	We’ve JUST entered the park
1200	77	20g free
1400	104	15g free, insulin, extended so only received partial insulin initially (later cancelled second portion of extended bolus)	Carby picnic lunch outside the park that could easily send non-diabetic into a coma!
1430	46	20g free	30 minutes after consuming over 100 carbs and only being treated for part of it!
1530	62	13g free
1700	71	10g free
1800	92	Dinner with free carbs and insulin	Wouldn’t you know, he didn’t finish his food?  Adding insult to injury here! I think he may be consorting with the enemy.  Wait, who’s the enemy again?
1900	55	20g free	Yes, I’m adding protein sources, too, all along.  It’s not only simple carbs!
2000	105		Basal insulin remains OFF
2100	36	20g free	REPEAT…THIRTY-SIX
2130	39	20g free	Sleeping, sweaty, didn’t change! This is the dumbest disease EVER!
2200	100		Exhale
2300	232		Resumed basal insulin
0200	325		WTF?  Correction insulin given.
0900 March 14, 2013	158		Back to normal

 

 

Yep, ALL day, the child had NO insulin except for meals, and apparently, even that was too much because Larry, Moe, Curly, Alfalfa and Buckwheat decided to join the party.  That’s all well and good, but if they could shoot off a flare, tag in, or fire a warning shot to let me know they’re helping, I’d really appreciate it.  I’d be much obliged.  Since they don’t believe in open and honest communication, I’m losing sleep, getting an ulcer from worry and wasting a hell of a lot of money on test strips!  Did you count those FOURTEEN checks in 14 hours?!  Furthermore, they’re TERRIBLE shots!  Clearly, wasting way too many bullets, misfiring, throwing punches in the dark with their eyes closed…  I feel like I’m an experienced Navy SEAL paired with inadequate and untrained Iraqi soldiers. They are more of a hindrance than help…a liability.

I’m not sure if it’s good news or bad news, but his blood sugars are more “normal” today.  I haven’t seen the death certificates.  I haven’t seen the tribes hang Larry, Moe, Curly, Buckwheat and Alfalfa’s heads in effigy.  I haven’t been presented with a Peace Treaty. But, I think the battle may be over.  I don’t want anything to “die” on my baby, but we can’t be duplicating each other’s efforts!  If you’re going to die inevitably, then die already! The way the past few days have been, I really feel like his Type One Disease Management IS being run by the Three Stooges!

Now, I’m left wondering.  Is this it?  Is the honeymoon over? Did the Betas fall, or have they only retreated?  Are they lying in wait, preparing to attack again when I least expect it? Only time will tell. In the meantime, I lie in wait.  I’ve got my gun cocked, loaded with chocolate milk, peanut butter crackers, Quick Sticks, Candy and Glucose tabs. I’m mixing adequate amounts of fats, proteins, simple carbohydrates and complex carbohydrates.  I’m dosing insulin using the “Mixing Bowl” philosophy (see prior blog).  And, I’m just waiting to hear “Mommy, I feel low!”

Rhonda

Mixing Bowl

March 9, 2013

Mixing Bowl

Lately, in my crazy, tired, stressed-out head, I’ve likened managing diabetes to making Grandma’s favorite cake recipe by scratch…with no recipe.  If you get everything right, your cake will turn out perfectly.  If you miss one ingredient, or put too much or too little of something, your cake will flop, overflow, or just not be quite right.

Those who don’t regularly deal with diabetes think we just check a blood sugar and give insulin.  What they don’t understand or know is that there are so many more ingredients to the process. Forgetting to consider one thing can flop our cake….and our ultimate goal (the perfect cake) is normoglycemia (normal blood sugar). 

So, here’s the recipe:

First , you check the blood sugar.  Hopefully it’s normal, but don’t hold your breath.  (I would’ve died from hypoxia a long time ago if I held my breath!) When deciding on how much insulin to put in the mixing bowl, you primarily have to consider the carbohydrates the child is consuming.  So, much like the flour and sugar are the primary ingredients in baking your cake, the current blood sugar and carbohydrates are the primary ingredients in dosing insulin.

But, if you fail to use or consider other smaller ingredients, your cake flops.  Baking powder, eggs, oil, milk, cocoa powder…..etc. Our “ingredients” are intrinsic and extrinsic.  Some we can control, others we cannot.

As diabetic parents, we have to consider the level of the blood sugar.  High ones require more insulin, low ones require less insulin. 

We have to adjust for extrinsic factors:

·         The TYPE of carbohydrates (Simple or complex, each of which impact the glucose level differently and at different times). 

·         The fat and protein content (High fat or protein meals make the glucose spike HOURS later!).

·         The child’s current and future activity level (Running around like a madman uses up all the circulating carbohydrates and causes a rapid glucose drop).

·          Growth.  Size of the Child. Hormones. 

·         The site of injection of insulin.

·          How Mom is holding her mouth and the color of her shirt.

·         What the child had the prior meal.

·         The amount of hairs left on Daddy’s head. 

You have to consider ALL of it.  Gather all that together, and throw it in the mixing bowl.

Then you stir the ingredients with your Math-VooDoo-Sorcery-Science spoon.  Slow down! Not too many stirs, not too few.  Pour the mixture into your cake pan (read:  diabetic child) and allow to cook in the oven.

What’s going on intrinsically in the “oven” that will impact the outcome?

·         Is that “oven” growing? 

·         Developing an illness? 

·         Is his brother irritating him?  Are they all irritating me?

·         Is now a HORRIBLE time for his Omnipod to fail? (If so, you can guarantee a failure and the dreaded screech of death!)

·         Having a “leftover” fat or protein spike from another meal?

·         Have a few remaining functioning beta cells today that decide NOW is a great time to fritz out?

·          Sheer stubbornness of diabetes to cooperate and adhere to logic and reason! (It's quite a stupid disease!)

Any and all of those intrinsic factors can make or break your cake.

In one to four hours, check your concoction.  Did it flop (go too low)?  Did it overflow and burn inside the oven (hyperglycemia) (leaving you yet another mess to clean!)?  Or, for one rare moment, was it just right? 

No two days are the same.  The same meal can impact him differently on different days due to those intrinsic and extrinsic factors.  Success and failure.  It’s baking a cake without a recipe.  One day the cake is great, the next day you wouldn’t feed it to your dog!

But, as T1D parents, we persevere.  We add more carbs, less carbs, less insulin, extend the insulin’s actions, we stir more, we stir less.  We try dancing, holding our mouths differently, wearing a different colored shirt, giving Daddy a toupee, and drinking wine…WHATEVER it takes to achieve the elusive goal of normoglycemia.  And some days, we actually get it right….THAT is our icing on the cake!

Rhonda

Quarterly Report Card

March 2, 2013

Quarterly Report Card

Even though I’ve been told not to view it as a report card, I can’t help but view our quarterly Hemoglobin A1C results as MY report card.  How good of a pancreas am I? I can’t help it.   And, I was a straight-A student, so making non-A’s or a non-passing grade is NOT an option for me. 

Background:  For those of you who don’t know, the Hemoglobin A1C is an “average” of what one’s blood sugar has been over the past three months.  A normal non-diabetic person ranges from 4-6 (Don’t ask me the unit of measurement.  I don’t remember.  I think Mg/dL, but don’t quote me…it’s not important and I digress).  For a growing Type One Diabetic Child, the Endocrinologist likes the A1C to be in the 6-8 range.  Due to the volatility of this stupid disease and the timing and actions of insulin and food, keeping it “normal” like a non-diabetic is virtually impossible.  So, we shoot for good enough.

When Aiden was diagnosed, his A1C was 11.2 which was an average sugar of something like 274!  Yikes! First quarter, down to 8.2.  Next quarter, down to 7.2.  Success!  I was so proud!

When Asa was diagnosed, his A1C was 8.2.  We caught him so much earlier, and he was so much less sick.  First quarter, down to 7.0.  Score!  Danged near perfect!  Proud again! I call those A’s on the report card!

Here’s the kicker.  Since the “automatic” engine died, learning to be a pancreas is like driving a manual transmission vehicle.  Sometimes I give it too much gas.  Sometimes I give it too much clutch.  Sometimes we stall out.  Sometimes my hand slips off the gear shift. Sometimes there’s no rhyme or reason for any of it.  There’s an art, science, and witchcraft to get it all in sync.

In the hospital, we were started on the OneTouch Blood Glucose Meter.  We liked it; we were used to it.  Consumer Reports rank it the best meter on the market due to its reliability of results, ease of use, transportability, etc.  Frankly, however, meters are a personal preference.  None are perfect, and each patient has to decide what is best for them. 

We were given a free “Latest and Greatest” One Touch Meter (Verio IQ), and as any good nerd would do, before I committed to this meter (last summer), I did a parallel study.  I put blood on each meter, at the same time, in all situations.  Well, this “gem” sucked!  It consistently measured Aiden higher than the OneTouch Ultra.  When he felt low, it would give a “normal” reading.  That was enough for me to give it away and stick with the OneTouch Ultra.

In September, we switched to insulin pump therapy using the Omnipod system.  Built into the Omnipod system is a FreeStyle meter. Staying true to my nerd form, I parallel studied the FreeStyle against the OneTouch Ultra.  The FreeStyle consistently measured LOWER than the OneTouch.  So, due to the convenience of using the entire system together, we opted to switch to FreeStyle.

Aiden’s first A1C AFTER starting on FreeStyle/Omnipod was UP 0.5 points to 7.8.  I thought he was doing well.  I thought I was doing well. This was a failing grade on my report card, a big fat C- in my book, and I busted out crying.  Despite the CDE and Endocrinologist’s reassurances that “Aiden’s growing”, “He’s exiting the honeymoon phase”, and “You’re doing a good job”, I still felt like a failure and cried right there.  I kept insisting “It can be the same or go down.  It’s NOT supposed to go UP!”  I just felt like all my testing, trials, getting up and staying up at night was misguided and a moot point.  WHY?  Just for the number to worsen?!

Yet, like a boxer who gets up to take another punch, I got up.  I’ve been taking the punches.  Day after day, night after night.  Anything to make sure my babies are healthy.  Anything to manually shift their transmissions.  It’s no easy job being a pancreas…times two.

Three months pass, and it’s time to draw A1Cs again.  I took out all my records and averaged both boys’ blood sugars so I had a reasonable guess as to what their A1Cs would be.  I figured with a little “warning” and a level of expectation, I wouldn’t cry like a blubbering baby right there in the office (and thereby make everyone uncomfortable…including my innocent children). Simultaneously, when picking up a supply of strips, I got a notification from the pharmacy that the insurance company wants us to switch to OneTouch Ultra and will no longer cover the FreeStyle strips.

Initially, I was pissed.  Don’t tell ME what to do?!  I’m doing my best here!  Then, at the gym where I do lots of thinking, I started thinking about the OneTouch vs. the FreeStyle. I remembered my parallel study. And, I talked to my husband about it.  Maybe it wouldn’t be so bad to use the OneTouch after all.  A little less convenient, but not bad.

Going to the Endocrinologist confirmed my decision.  BOTH A1Cs were UP again!  (8.1 and 7.8…bad) SHIT!  (Good news, I didn’t cry.  Terribly disappointed with the D- on the report card, but I held it together!) What it boils down to is their A1Cs are reflective of what their sugars would’ve been on the OneTouch.  The FreeStyle is reading too low, thus there are times when their sugars are actually higher than what the meter reads, and, they aren’t getting enough insulin.  Granted, I recognize there are SO many other factors that also impact these reports, but right now, this is the dependent variable in my study. (Growth, hormones, timing of insulin, amount of food, type of food, alignment of the stars and moon, brand of underwear they wear, exiting the honeymoon phase…and my favorite…his pancreas is completing its death.--  Nobody wants to hear anything is dying or dead on their baby…except maybe hair cells).

I made the decision to switch back to OneTouch.  I changed the prescription.  I reorganized.  I explained to the boys.  I got a refund on unopened FreeStyle strips and got a new supply of OneTouch.  And….instead of $96, this supply only cost $25.  Score!  Another bonus!

Of course, I’m running another parallel study of FreeStyle vs. OneTouch with the remaining strips we have because that's the kind of dork I am.  I’m getting the same results.  FreeStyle is anywhere from 10 to 40 points lower.  It makes me sick to think I’ve been working so hard, but my efforts have been thwarted by inaccurate results. I’m taking more punches and a couple of kicks, too.  I’ll take the pain and inconvenience to get the best results for my boys. I’ll repeat testing, adjust rates, and hold my breath.

Only time will tell.  We’ll see how this quarter goes.  I’m hoping for and expecting IMPROVED A1C results.   Hold your breath….

Rhonda

Beep...Beep...Beep

March 2, 2013

Beep…Beep…Beep

There are plenty of annoying noises in this life.  Fingernails on the chalkboard.  Someone’s crying baby in the restaurant or movie. False bravado of some singers (Pick a note and stick with it!..I digress).  There are LOTS of annoying sounds to say the least.  I’ve come to despise all the “beeps” in my house.  Invariably, the “beep” means work for me, and I need NO help finding or accumulating work.  With five hungry and demanding boys, one super-sexy husband, and two worthless dogs in the home, I have more than enough work.  I don’t need some stupid beep to remind me there’s more or it’s time to end my 32-second break and get up again!

1.        Triple beep, beep, beep…Stupid alarm clock. Day or night, it beeps way too soon! Every 9 minutes until I curse myself awake, unready to face the day, not enough sleep again.  When it’s Jerry’s alarm, I ordinarily threaten his life if he doesn’t silence it!  His is easily 10x more annoying than mine, probably because it’s not meant to wake me up but it does!

2.       Beep….it sounds more like a little “tootle-loo” type of beep, but I hate it.  The Washer and Dryer!  To me it says, “Get up, heifer, and take these clothes out!  More loads await!” There is a never-ending pile to sort, wash, dry, fold, put away.  Jerry offered to nerd it up and change the “ringtone” on it.  He offered to make it a Bon Jovi song….My response, “Why would you want to make me hate a Bon Jovi song?!”

3.       Beeeppp…..it’s the dishwasher.  The piece-of-crap “quiet” dishwasher becomes noisy as it beeps to tell me it’s done.  Some days, I can breathe and say, “(Insert teenage boy name here)…dishes are done!”  But, then I have to hear then clanking around as they inefficiently put the dishes away, take too long to do it, and slam cabinets shut!  But, more often than not, that annoying beep is saying, “Get off your butt and unload me.  There’s a sink full waiting to be washed and rinsed inadequately!”

4.       BBBEEEPPP….  It’s the danged Omnipod!  (For those who don’t know, that’s my sons’ insulin pump). Invariably, a pod that is full of over 100 units of insulin will fail, wasting over half the insulin (I’ve learned to salvage some of it).  Such failure, typically when placed on a boy’s leg, is caused by such egregious acts like walking down the stairs or putting on one’s seatbelt.  This dreaded NON-STOP screech forces me to get up and respond immediately.  If I don’t, my boy isn’t getting insulin…the one substance that he needs to keep him ALIVE.  See the urgency here? I have to get up, right away, and amend the situation. The only therapy is that I can take my aggression against diabetes on the failed pod.   Trash can, hammer, freezer.  Whatever it takes to feel a little better and stop the insane beep.

5.       Beep, beep, beep…..Yep, it’s that danged Omnipod again.  Reminding me, because clearly I’m an idiot and can’t keep track of time, that it is time to change the pod (within 4 hours). Like an amorous husband, it won’t stop demanding (and beeping) until it gets the acknowledgement and relief it wants.  Another reminder of work to come.

6.       Does the phone ringing count?  I say…yes.  It’s not a beep, but it’s a ring that invariably occurs once all the other beeps have been answered and acknowledged.   And, I have to get up from the chair that isn’t even warm yet.

7.       Beeeepppp….Another one?  Yep, another one.  Wait, this one is good.  It’s the magic beep saying my coffee is ready.  The coffee maker has redeemed all the other beeping appliances as it delivers what I need to survive and have the energy to contend with all the other beeps.  Sweet, delicious, black joy in my cup…mixed with milk, creamer, and whipped cream.  What beeps?  Did you hear a beep?

For any engineers out there, can you be more creative in designing the alerts on your appliances in the future?  How about a beluga sound?  Dog barking?  Owl screeching?  Grenade exploding?  A foreign language? Be creative!  Not the same stupid beep, all the time.

Rhonda

Blow Me One Last Kiss

Blow Me One Last Kiss

2/23/2013

I love music. A good song takes me to a better place, another time.  Music is fun, it’s therapeutic, it’s cathartic.  A catchy tune, sultry voices, sound musicians, relatable lyrics…One alone or all together can make or break a song.  Songs are real, poetry from someone’s soul.  They are glimpses into life, love, relationships…and what’s better than one you can completely relate to?  One you’ve “lived” yourself?

 Now, anyone who knows me knows I LOVE me some Bon Jovi (for all of the above reasons, and JBJ is sweet eye candy, but I digress). Bon Jovi isn’t the only band, genre or music I enjoy.  I love me some George Strait, Tim McGraw, Matchbox Twenty, Maroon 5, Pink, Adele, Daughtry…the list goes on.  Point being, I’m not a “one trick” pony.  Bon Jovi IS my FAVORITE, but I do like other stuff, but NONE of this has anything to do with the point of this blog.

While enjoying my PiNK CD “The Truth About Love”, the songs “Blow Me One Last Kiss” and “Try” have really spoken to me.  These songs are about love and relationships. Many songs describes parts of my relationship with my fabulous husband, Jerry, but more so, good portions of these songs describe my relationship my arch nemesis, Diabetes.  Look through a new set of glasses, listen a bit differently.  The lyrics are meaningful if you think about them in this new light.

White knuckles and sweaty palms from hanging on too tight

Clenched shut jaw, I've got another headache again tonight

Eyes on fire, eyes on fire, and they burn from all the tears

I've been crying, I've been crying, I've been dying over you

Tie a knot in the rope, tryin' to hold, tryin' to hold,

But there's nothing to grasp so I let go

I think I've finally had enough, I think I maybe think too much

I think this might be it for us (blow me one last kiss)

You think I'm just too serious, I think you're full of shit

My head is spinning so (blow me one last kiss)

Just when it can't get worse, I've had a shit day

(NO!)Have you had a shit day? (NO!), We've had a shit day (NO!)

I think that life's too short for this, I want back my ignorance and bliss

I think I've had enough of this, blow me one last kiss…

I have had enough, but he’s going nowhere. I think constantly about this stupid disease and anything I can do to improve my relationship with him and/or my boys. I’ve shed way too many tears about Diabetes. Mr. Diabetes is “full of S*&!”, and some days I think it can’t get worse, but it does. Unfortunately, I can’t blow Diabetes one last kiss and expect him to go away. He’s an abusive stalking lover who won’t leave no matter what.  I’ll never get back my ignorance and bliss. So, until a cure is found and I can’t blow him one last kiss…

Where there is desire
There is gonna be a flame
Where there is a flame
Someone's bound to get burned
But just because it burns
Doesn't mean you're gonna die
You've gotta get up and try try try
Gotta get up and try try try
You gotta get up and try try try

I have the desire to manage and defeat this disease, but his flame is big and strong. There are days the fatigue feels fatal, but I keep getting up.  I get burned, trying, trying to do my best. Until my boys are big, until a cure is found, I HAVE to get up and try.  I have to fight back against this stupid disease; I can’t win; I’ll keep getting burned, but I won’t stop fighting.  I’ll try, and try, and try.

Rhonda