Friday, September 30, 2011

The D Mother of Invention...

Since the school nurse makes an appearance only one morning a week at our school, I get five phone calls a day, and a text. Well...that is the way it is supposed to be anyway.

It is a brilliant plan I hatched under the guise of necessity. I'll be the boys virtual nurse! They can push the buttons. They can follow direction. I'm pretty good at SWAGing meals...seriously...it was a brilliant idea in conception.

At snack the two youngest would check their sugars and call me. At that time they would correct if need be, and I would decide what snack they would eat out of their lunch according to the number given me.

Then, before lunch, the youngest would call me. He would give me his blood sugar number...just so I know he did it. B, I trust him...he doesn't need to call me. This is also where J would text me with his lunchtime number. (J carb counts and is pretty much on his own these days. He'll get to keep his freedom as long as his meter tells me he is testing.)

THEN, after the younger boys eat, they will call me again! Tell me what they ate and I will give them carb counts based on their number before they ate, based on what they ate, and based on if it is a PE day at school/or a hot day/or a full moon. My brains calculator looks a little bit like this:


(Side note: I used to pre bolus, but they would often not eat everything, or they would trade with someone. ) (Side note to the side note: I used to not let them trade, but turns out when you are an elementary school boy...this is REALLY important. It is the exception to the rule..but it does happen when I least expect it to.)

ANYHOO...

THAT was the plan. A lot of calling, but not half bad. I just needed my cell phone velcro-ed to my ear at all times, and we were good.

But I've found the fly in the ointment. The kink in the cog. The plan foiler if you will...

They have to actually call. And in J's case, he actually has to text.

Doh!

If the littles don't call...then I have to call the office, who then calls the classroom...who then gets the child for me so I can play pancreas.

Or I can call their cell phone, which most of the time is fruitless. The business of the classroom often mutes the rings and they do not hear. And 25% of the time they forget their cell phones anyway.

They pretty much forget to call me, (this is where I was going to put a percentage of the time they forget, but shockerprisingly enough...I'm not a math genius, so let's just say it is too much.)

In reality, it is an imperfect system at best.

What I really need is my cell phone to be attached to the school intercom...


It is a good plan, right?

It is either this or two plastic cups tied together with a super long string.

I know it sounds ridiculous, but I'm considering that too...


Yeah, I AM crazy! Crazy enough to consider lobbying the state of California to pitch in for the cups...

P.S. To all my email subscribers: I apologize the video I made the other day wouldn't translate to your email box. To view my last post and see my take on Simon and Garfunkel, please click HERE.

Monday, September 26, 2011

There are some things you need to know...

A year ago I wrote a blog post called, "I want you to know something." It is one of Our Diabetic Life's most visited posts, still to this day. I feel strongly I need to add some things to the list. I feel strongly that today, there is something you need to know...

You need to know that when you check your child's blood sugar, no matter what the number...you are winning.

You need to know that the worry you keep in your heart all day long is only proof that you are a good pancreas.

You need to know that when your child lashes out against diabetes, he or she isn't lashing out against you.

You need to know that you can switch endos if your endo isn't listening or if your endo doesn't give you good advice. If your child's A1C stays in the upper stratosphere with no hope of returning to earth...you can move on. It is ok.

You need to know that your child's blood sugars will never be 100% perfect all the time.

You need to know that you are stronger than you think you are.

You need to know that on the hardest of days, the fact that you don't give up counts for more than you know.

You need to know that most people don't know what Type 1 Diabetes is. Please don't take it personally when they confuse it with Type 2.

You need to know that it is ok to cry sometimes.

You need to know that shots, or site changes are not something you are doing to hurt your child, they are something you are doing to help your child.

You need to know that your child loves you more than you think. You need to know your child doesn't blame you for all of this.

You need to know that you can't compare your child's diabetes with another child's diabetes. Everyone treats differently. Everyone's body is different.

You need to know that some children can easily acquire good A1C's, and others can't.

You need to know diabetes is hard. You are amazing for doing as much as you do, as well as you do.

You need to know that restricting portions at a carb-o-polooza buffet is something that all parents should do, not just parents of children with diabetes. Don't feel guilty when you have to say no to that third bowl of ice cream, or that second cookie.

You need to know that picking a pump, or a way to manage your child's diabetes is a very personal choice. Don't let other parents make if for you.

You need to know that it is ok to ask your husband or your family for help. It is ok to expect it.

You need to know that there are angels waiting to help, you just need to listen for their promptings.

You need to know that if today is a bad day, chances are tomorrow, or the next...it will be better.

You need to know that you need to do something for you. You are important...your needs are important too.

You need to know that there isn't a reason for everything. If there is a high blood sugar, and you can't figure out why...it is probably because they have diabetes...not something you did.

You need to know that there is a way to live this life with joy. It is up to you to find it.

You need to know that forgetting something doesn't mean you are an idiot. It means you are human and your swelly brain can't remember everything all the time.

You need to know you are loved.

You need to know I pray for you every night.

You need to know that in time...things will get better.

You need to know you are reading this for a reason. You need to know I mean every word.

You need to know that one day your child will be doing this all on their own, and you find a way to trust their decisions.

You need to know that you aren't alone in all of this. I know there are days when you FEEL alone. I know there are days when you FEEL like you fail. You are not alone...you are not failing.

You are not failing...

You are not failing...

I feel really strongly you just need to know that. You NEED to know...you are NOT failing your child. Your best is good enough. Keep moving forward.

You need to know the best is yet to come.

Wednesday, September 21, 2011

Laughter and Insulin...the best medicine.

J: "Mom, I'm high."

Me: "J, this is the third time this week! Don't you think you are enjoying this high thing a little too much!"

J: "But it makes me feel crappy mom, and it is SOOOO fun feeling crappy!"

Real conversation that took place in Costco this summer. Were people listening in? You bet your blood ketone monitor they were! And that is ok. We gotta have fun with diabetes sometimes or we'll CRACK! Like split in half...

I'm serious.

If I didn't laugh about diabetes, I'd probably be committed to a padded cell.

There is so much REALITY with this disease, sometimes we need to take it to another place just to find our footing. Come on, we all know the consequences of high blood sugars. We all know what it is doing to our children's bodies. If we looked at that literally every time a high screamed back at us at a meter...well, we would be messes.

Wait, we are messes. All our swelly brains are messes whether we'd like to admit it or not.

Let's just say, we would be committed messes.

And the boys need some breathing room too. They need to see that random highs aren't the end of the world. A lot of sustained highs...well that is something to be taken a bit more seriously. But if it is out of left field, what are you gonna do?

Cry?

Well...ok...sometimes I cry...everyonecrysokay???

But most of the time I blow it off. We try to figure out what the culprit was to fix it for next time, but other than that we follow through with the motto 'keep calm and carry on!'

And our other motto, "You get what you get and you don't throw a fit." That comes into play too. My boys have diabetes, and diabetes means we can't keep blood sugars perfect every minute of every day.

So we laugh. And we are sarcastic. And we probably gave a couple people in Costco something to talk about around the dinner table. So what?

Milton Berle once said, "Laughter is like an instant vacation."

Who among us couldn't use a break from reality? I don't know about you, but I'm going to make an effort to laugh more. The farther I get away from the padded cell waiting for me, the better!

This is my submission for this month's DSMA Blog Carnival! It is fun to play along...go ahead and fill in the blanks yourself! "If I didn't laugh about_____then I would_____."

Monday, September 19, 2011

Conflicted.

I'm sitting here waiting patiently for two new Medtronic Revel Insulin Pumps to grace my front porch. And as I reflect, the heaviness of its meaning fills the room. The air is getting thinner and my shoulders are aching from the enormity of it all.

Every four years my boys get new pumps. J just celebrated 8 years on the pump. B just finished up 4 years. L is on his second pump and still has a couple years before he is due for an upgrade. All the memories of starting the pump are flooding back. The excitement, the concern, the fear of the unknown. Insulin pumps are certainly worth their weight in gold, but whether I have the courage to come to terms with it or not...they are a symbol of our diabetic life. They represent our journey...they represent our future for the next 4 years and beyond.

Diabetes is such a fickle disease. Many days I count my blessings. Many days I see the good in it all. My boys have risen to the occasion...they are amazing and I have to give diabetes credit for letting their resilience shine. But other days when my back holds the weight of barrels of rocky blood sugars...well those days, I feel in danger of buckling under the pressure. It is a vicious cycle of ups and downs. It is a weather pattern where seasons change by the day.

Don't get me wrong. I am thankful...so so very thankful to have these instruments at our disposal. I am thankful for the men and woman in the world that are brilliant enough to invent such intricate gadgets. I am thankful that my boys can bolus themselves. I am thankful for the "control" and the flexibility it brings to our lives.

Very thankful.

But sad too.

And I guess that is ok. I am a mother, and being emotional about my boys' chronic illnesses is just par for the course.

I am excited, I am sad and I am thankful. I'm sure my brain is lit up like a Christmas tree right now trying to sort it all out. It is a puzzle of emotions that will make more sense once I put them together. Unfortunately, at the moment the pieces are still scattered around the table.

But in the meantime, I'll do the breakfast dishes and hope that when my boys come home from school today their hearts will putter with excitement, and the heaviness of receiving gadgets that truly keep them alive day in and day out won't put a damper on what is honestly a very blessed occasion.

Saturday, September 17, 2011

Meri's 30.

This week is National Chronic Invisible Illness week and some friends of mine around the DOC, (Diabetes Online Community,) have been completing this meme. Below is my 30.

1. The illness we live with is: Type 1 Diabetes.

2. My boys were diagnosed with it in the year: 1998, 2006, 2007

3. But they had symptoms since: J had symptoms up to 2 months before, L and B were diagnosed the day we saw a hint of a symptom.

4. The biggest adjustment I’ve had to make is: Living with the worry. Living with another cog in my brain that is set to "diabetes" and is never shut off.

5. Most people assume: Most people who don't know me assume that I'm probably a nervous wreck all the time, but honestly I'm pretty normal and laid back. Unless I need to fight for something, then I am a mama bear for sure.

6. The hardest part about mornings are: Not asking my boys to check their sugar before they even get out of bed. I've read this was a pet peeve of some PWD's, so now I try to just check it for them, either before they wake, or before they get out of bed.

7. My favorite medical TV show is: I used to watch Grey's Anatomy. Now I'm pretty much over it.

8. A gadget I couldn’t live without is: The meter. If those things could only be found dipped in gold and cost a thousand dollars they would be worth it. (Interestingly enough, I have the same philosophy for baby swings.)

9. The hardest part about nights are: Getting to sleep. I do some of my best worrying at night. Unfortunately.

10. Each day I take ___ pills & ___ vitamins: Nope. I don't take any. They don't take any. We stick to insulin.

11. Regarding alternative treatments I: am not a happy camper when I get spam emails from people who tout things as a cure. There is no cure for type 1 diabetes. Your special drink/diet/root won't fix my boys Pancreases.

12. If I had to choose between an invisible illness or visible I would choose: If we HAD to choose between the two, invisible is my illness of choice I suppose. My boys can go out in the world and hide diabetes if they feel inclined. And I have a feeling, there will be many days they will feel inclined.

13. Regarding working and career: I am lucky that I can spend my "career" taking care of my boys. If we depended on my income to live and pay the mortgage, we wouldn't have a house and a mortgage. There just aren't daycare providers willing to care for children with T1. And if I did find one, they would in all probability take so much of my income the job would be moot in the first place. But I have found that I LOVE to write. So who knows what my future holds.

14. People would be surprised to know: That we don't have a school nurse. All my boys have checked their own sugars since kindergarten and then called me from school for carb counts.

15. The hardest thing to accept about my new reality has been: That worry is like acid, and it usually makes things worse before you can begin healing. I need to stuff the worry and let my kids just be kids sometimes.

16. Something I never thought I could do with this illness that I did was: Send my son to scout camp/school camp/trips to family without me. But I did! They did! We did it!

17. The commercials about their illness: Are usually geared towards 70 year old type 2 diabetics.

18. Something I really miss doing since they were diagnosed is: Leaving the house on a whim and not worrying about grabbing life saving supplies.

19. It was really hard to have to give up: It wasn't hard to give anything up. I would give up the world for my boys.

20. A new hobby I have taken up since their diagnosis is: Blogging baby!! BEST. HOBBY. EVAH!

21. If I could have one day of feeling normal again I would: Send my boys to school, and then go shopping while leaving my cell phone at home.

22. My boys illness has taught me: That life gives us trials to help us grow into better, stronger more empathetic human beings.

23. Want to know a secret? One thing people say that gets under my skin is: They know someone who has diabetes...and that someone is their grandmother who takes 1 pill a day and checks her sugar every wed. morning. (not that there is anything wrong with that...my father in law does the same thing...it's just that they are thinking that our life is the same...when in fact, our life is the complete opposite of that.) Even just the fact that they are trying to relate is wonderful, but what usually bothers me is they don't want to hear that they are not the same thing.

24. But I love it when people: Ask questions! OHHH! It gives me goose bumps! It feels so good to have someone really want to know, rather than me flinging information at their glossy eyes.

25. My favorite motto, scripture, quote that gets me through tough times is: "Peace I leave with you, peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid." ~John 14:27

26. When someone is diagnosed I’d like to tell them: You have been asked to run a marathon you haven't trained for. Some days the course will feel easier, and some days, no matter how seasoned you are, the mountains make for a rough run. The trick is to enjoy the scenery on the way.

27. Something that has surprised me about living with an illness is: How resilient my boys are. Man, they can endure so much more than I would have ever given them credit for.

28. The nicest thing someone did for me when I wasn’t feeling well was: Bring me cookies, 'cuz I am a sucker for cookies!

29. I’m involved with Invisible Illness Week because: Kerri did it, Abby did it, Reyna did it and now I am doing it. I really really think you should do it too!

30. The fact that you read this list makes me feel: Like I am not alone. Thank you for that.

Tuesday, September 13, 2011

Me, Myself and My Gut

My eyes flash open.

My stomach hurts. Something isn't right.

I check the clock: 4:00am

My first thought is the boys. Did Ryan wake to test them last night? They were swimming the night before...maybe they are tanking now...

I roll over.

"Shut up brain and go back to sleep."

10 minutes later:

My eyes flash open.

My stomach hurts. Something isn't right.

"Meri you are so dramatic. You aren't magic. You aren't waking up for a reason. You are stupid. Go back to sleep."

10 minutes later:

My eyes flash open...

"ARRRRRG!"

I slip out of bed and make my way to the station. Thankfully there is only one monitor there, so I don't have to look through three different histories to see if Ryan tested.

There they are! He tested, no one was low or especially high.

"THEY ARE FINE!! Told you stupid!"

It takes awhile but I'm back into an unsettling sleep. I toss and turn but pretend I'm in deep sleep anyway.

But then: My eyes flash open.

My stomach hurts. Something isn't right.

I look to the clock: How is it only 20 minutes later?

I give up. "Uncle!"

I quietly tip toe out of the room to check on the boys. I slip into the doorway of J's room and wait. I don't hear anything so I take a couple steps closer and finally hear the steady sound of his breaths.

"He's alive stupid."

Next to L's and B's room. B is stirring, nice! L has his blanket over his head. NOT NICE! I walk closer and L suddenly whisks his blanket away, only to startle the both of us and cause me nearly to lose my dinner from the night before.

He smiles widely, "I'm up early mom!"

"Try to go back to sleep sweetheart."

"Ok!" He whisks his blanket over his head again and I walk out.

I sit on the couch contemplating the feeling so deep in my gut I can't deny. Where is this coming from? Should I test their sugars?

"They are alive stupid. Go take a shower."

And I do.

I come out of room to a still house and glide quietly the best I can to the kitchen. There I find J rustling through the fridge.

"What are you doing up? What is going on?"

"Oh, I need insulin. My stomach hurts so bad it woke me up. I guess my pump ran out of insulin sometime last night. I'm 389."

Ketones 2.8.

Throw up.

Extra bolus.

Water.

Extra bolus.

Extra bolus.

Ketones 0.3.

He is ok.

There is no denying that we as mothers of children with diabetes have a sort of 6th sense that lingers within our swelly brains.

I've read story after story of mothers following their intuition and finding a low that would have otherwise been missed. The moral of THIS story, and what I hope sticks with you...is that those feelings are given to us for a reason. They are not to be doubted.

I spent so many years taking my worry to the next level and being dramatic about everything. Growing older and wiser along with my life experiences have taught me that usually...everything is ok. Looking back, most of the drama just wasn't warranted. So I've moved to this place of...I don't want to say complacency...more of a place of Laidback-ness. A place that keeps me from doing things I would have years ago. Unfortunately, I have gotten so comfortable here that I second guess the times when my gut sets off those flashing red alarms. When the alarm goes off I wonder, am I just being dramatic...or is there more? Is this alarm real? Are the angels waking me, or was that Italian food last night just making me restless?

I'm like a trash compactor when it comes to worry these days...I'm really good at stuffing it to my toes. So when the unrelenting alarms go off I always fight an inner battle. Should I Stuff it or should I act on it? A battle for the ages. A battle that isn't worth fighting when your gut is screaming at you at four in the morning.

So let me tell you...

Next time my eyes flash open and my gut starts screaming to me that something isn't right...I am going to listen, and I will check the boys blood sugars and their pumps. We are complicated human beings. I strongly believe that we are spiritual beings as well. There is a reason the alarms go off.

We must listen.

I can't explain it...I just know it...

Deep down in my gut, I know it.

Sunday, September 11, 2011

Yeah, that's a new one.

He nudged me pretty hard.

"Please?" He asks.

"umhum," I hum almost inaudibly.

He has been doing most of the nighttime checks lately and I've been encouraging him to wake me to help out.

I would do them...I just don't wake up for the alarm anymore. Alarm fatigue. I suppose, after so many years my body decided it wasn't going to put up with it anymore. My husband sets the alarm to a local music station and has it turned ALL the way up. The music BLARES, like scare the crap out of you blares, and I don't even budge.

Hence the nudging.

I skirted out of bed catching myself from buckling under my exhaustedness and made my way slowly to the blood sugar station with my arms slightly lifted and my hands flat to the ground for balance. I got the meter ready, grabbed a vial of strips and headed into the boys room...

"Why am I walking with one eye closed?" I think to myself, "you won't be blinded if you open the other one, Meri."

So I do, and my eyes adjust.

The soft beam of light filters into the boys' room and allows me just enough illumination to find B's finger and poke.

82.

"Crap."

As I move a couple feet to my right to make sure I'm reading the meter correctly I see B out the corner of my eye turn his pump light on.

"Oh great, I woke him...poor guy is probably seeing what time it is."

And then he mumbles something to himself and I see more clearly what is happening...

HE IS BOLUSING.

SLEEP BOLUSING???

What the what???!!!!

He was entering a blood sugar number and was at 327 by the time I stopped him.

I sat on the edge of his bed panicking on the inside and slowly, calmly rubbing his hair on the outside.

My mind raced. What if? What if I didn't catch it.

I waited a good 5 minutes to make sure he was back in a deep sleep and slipped his pump back into his Spibelt and zipped it tight.

L: 198

J: 157

I return to B's bedside to give him some juice and then watch him for awhile. He was so still...so peaceful. Will he try again? Should I lock his pump? No. No, he will be ok. I pat myself on the back for making the decision not to crawl into bed with him and make my way back to my room.

More often than not with this disease we have to take that leap of faith that everything is just going to be ok.

Regardless though, you gotta give diabetes props...it can throw a mean curveball.

Thursday, September 8, 2011

Shockaprising!

Earlier this week my status on facebook read: L just called. "I'm 69. I know mom, shockerprising!" That is his new word this month...and I LOOOOOOVE it!

Two days later I was schooled by my boys, telling me it isn't "shockerprising" it is "shockAprising!"

I totally feel like one of those old people who is trying to be hip, who say things wrong. Like when my mom said "off the hanger," instead of "off the hook."

Regardless, shockaprising has been the best thing since sliced bread around here. (HELLO! OLDNESS! Who says that saying anymore???)

Instead of L silently checking his sugar, and picking out his own appropriate snack before I can confer...he will now announce every low as he is testing, with "Shockaprising!"

It is such a relief for me to be able to step in to see HOW low he is, and in turn help him pick the best possible snack for the situation.

The only ramification of all of this, is that "shockaprising" stays in my head like a catchy song, ALL. DAY. LONG.

It is my first reaction to everything...in my head anyway.

I'm not sure why it is, but it is just fun to say. You have to say it with gusto when you do. Seriously...like your shocked...almost like you are fake shocked. (Gusto...what am I, 80?)

Luckily I have a son that is willing to play along with his mom. He agreed to a reenactment. Please find it below...

video

Funniest part: When I asked him to reenact for me, he really WAS low!

Shockaprising!

Tuesday, September 6, 2011

A1C from A to Z

Ask yourself, "does this number define my worth?"

Be mindful that this number shows where you were, not where you are today.

Cast out the feelings of guilt and ineptitude.

Don't give up on yourself.

Every number is a springboard to another. Use this number to help you get where you want to be...or to motivate you to stay where you want to be.

Forget the highs from last month. That is over. Today is a new day.

Give yourself credit where credit is due.

Have a heart to heart with your doctor. You are a team.

Invite friends to support you. Invite them to learn about diabetes...invite them to cheer you on!

Just keep swimming.

Keep some records. Writing things down help you see the big picture.

Let someone help you. You don't have to do this alone.

Motivate yourself by reading blogs in the community. Knowing you are not alone is huge!

Never say never. Anything can happen. This disease is unpredictable. Expect the unexpected.

Open your mind to new technologies.

Pray. If you don't pray, ponder.

Question your doctor. Ask why. Ask how. Ask when.

Remember that no one is perfect. Perfection does not exist with diabetes.

Start with small changes. Big changes in routine set yourself up for failure.

Talk about it. Holding feelings of inadequacy in makes it harder on you and makes it harder on those who want to support you.

Understand that getting nights right is half the battle. Start there.

Value your knowledge. You have learned a lot. Do not cut yourself short.

Wait for results. It takes time to see the fruits of your labors.

Xpect numbers to fluctuate. Life isn't linear.

You are doing better than you think you are.

Zebra. Because not everything should be about diabetes.