Tuesday, March 22, 2011

The Painful Reality.

This was an emotional journey gathering all these pictures.. There's so much more to this disease than meets the eye, but not just the mechanics of it but the HOW. 

As you all know, or should know if you read this blog enough, a Type 1's body does NOT produce insulin. Period. It's an autoimmune disease, the body attacked itself and left the pancreas, as Justice says "DEAD". To survive we all NEED insulin. We cannot turn food into energy without it. We cant do anything without it. And in another post soon I will explain how insulin is needed for more than just carbs. But today, I want to discuss how our Type 1's get their insulin.

Myself and others have pancreas' that work. So we go about our day with our organs doing what they're supposed to. Justice and others do not. So how does this magical hormone get into their bodies? 

Well it isn't fairy dust. It isn't a pill (although Justice and his pen pal buddy Caleb think that would rock!), it isn't a cream, or a patch. No. Its nothing that simple. Nothing that easy.

Everyday people with Type 1 Diabetes and parents, caregivers of children with Type 1 diabetes must pierce their skin. Not once but multiple times a day. For the rest of their lives. Until a CURE is found. No, insulin is NOT a cure. 

Yes. A needle. A poke. A prick. A shot. A sting. A hole in their skin. This doesn't just apply to the man who is 50, or the girl who is 16, this also applies to my 8 year old son and my close friend Laura's 2 yr old Nate.

And this is where I explain how this post became an idea...

It's late night, March 17th, 2011 and Justice is still up, laying in bed. Restless. A finger poke is done to get a reading. 146. Dexcom shows 153. Nice. Now I pray he can fall asleep. But he is scratching, and moaning.

I ask him whats wrong, and he tells me his sensor of 5 days is itching so so bad. This has never happened. He usually wears his sensors for 14 days at a time. But its on his butt, and its been so hot out. I think the sweat built up, and well it didn't mix well. A sensor is what is inserted into the skin for up to 14 days to send readings to his Continuous Glucose Monitor also know as Dexcom. This is not the one that administers insulin, this is JUST for the Dexcom.These sensors are put in using a very long needle. Then the needle is pulled out leaving a wire sensor under the skin. 

I always listen to my lil man. If hes wants a new sensor then that's what we will do. I take it off and his skin is bumpy and red. I clean it and apply some cream. He sighs in relief. 

We now put the new sensor in on his arm, easy peasy, Justice never even flinches for sensor or site changes anymore, but the stupid transmitter will NOT go in! Im using the lil lever, Im changing the angle of his arm, nothing is working. Then I see it. Tears. Streaming down his face. Its hurting. I am hurting my baby. I bite my lip. I stop. Ask Biggah to come in and help me. By this time Justice is hysterical saying pushing the transmitter is pushing the sensor hard and it hurts so bad. By the time we realize he needed to rotate his arm in an angle that I would never have dreamed of to do this, his face is soaked. His eyes are big and red. My heart is broken.

I console him, clean up and tuck him into bed. "Its OK mommy. It just hurt that's all".

I go to bed finally, of course waking up a bunch of times to calibrate new sensor, check sugars, etc. My sleep was restless, it was 2 hours combined and when I slept all I heard was the cries of my baby. At my hands. But this is what we must do. We have no other option.

In the morning I was texting with Laura and I told her what happened. She mentioned that the same thing happens with Nate and he cries too. We discussed how strong these kids  and adults living with Type 1 are and how heartbreaking it is to hear their cries and see their struggles.

Then this post was born.

I want people to see. I want them to hear. I want them to understand what every minute and everyday is like with this disease. 

My last couple of posts have been more geared towards educating, on the different aspects of this disease. I feel if the media, the community, our friends and loved ones truly GOT what this disease was all about, and all it involved, there wouldn't be so much ignorance. Things would be easier in school, at church, at work. 

I recall someone mentioning when Oprah did a "piece" on Diabetes she said "its not that bad". 

Well I beg to differ. My son has the battle scars on his arms, tush, stomach to prove it. That's just the physical. That's not even the mental challenges this disease can create.

But I digress. I want to explain the different ways and how many times the skin is pierced and why. So sit back, read, and just imagine if this was YOUR day or YOUR child's day. EVERYDAY.

Blood sugar checks: This is done anywhere from 6 to 20x a day, sometimes more if they're ill, running especially low or high,or when things are just not going "right". This is done with a strip, a meter and whats called a lancing device. The lancing device has a small "short" needle on the end of it, it has spring mechanism. It is cocked back, a button is pushed and lancet is pushed into the skin. Piercing it and causing blood to come out. Strip is put into the meter. The blood is sucked up by the strip, and the meter reads the sugar. This is done all day. Everyday. Anytime of the day, no matter what else is going on. 

Infusion sites: A small plastic cannula or steel one that is inserted under the skin to administer insulin via an insulin pump. This is normally done every 2 to 3 days BUT if sugars are consistently high, if a site is pulled out, or insulin has somehow gone bad, the site must be changed. This occurs on birthdays, holidays, at 4am, during play dates, whenever. 

Syringes: Another form of delivering insulin. While some choose to use a pump others opt to use syringes to deliver their insulin. Using this form is called MDI: Multiple Daily Injections, this means minimally 4 shots a day up to as many as 10. EVERY TIME something is eaten, a shot is needed. On a date in a fancy restaurant, at the movies, at the beach. Wherever. Syringes are also used in the event of an infusion site failure, when sugar levels are extremely high, one cannot rely on their pump, and need to manually inject insulin. 

Continuous Glucose Monitor: A "CGM" is a device that is used to watch the trends (the ups and downs) in a persons blood sugar, they monitor the levels and let you know if you are dropping or going high. Sometimes the number itself is spot on, other times it off. This device is not used in lieu of finger pokes but in addition to. To get a better understanding of what that number means. A great number like 97 means nothing unless you can see if you're holding steady, going down, or going up. Its a great tool. In order to use this device a small metal sensor is inserted under the skin, again using a needle. Some CGM sensors can be worn for 2 weeks, others for a week. But again like infusion sites, life can occur, or device can err, and the sensor will need replacing. 

Can you imagine? Everyday, anytime, any moment, no matter what you're doing, no matter how you feel, how old you are, how hungry you are, how busy.

These children and adults are forced to be brave.They were not given a choice. Nothing could have been "done" to avoid or prevent this. This is life. Everyday. There are no breaks, no holidays, no days off. It doesn't matter if its your birthday, or Christmas, or if you haven't slept in days, have a test, a big date, company coming over, a movie to watch, games to play with your siblings, if your 8 month old is napping, or your 3 year old is hungry ...

Diabetes is there through it all. And although you may not see this part of it, it plays a major role. Without those finger pokes there's no way of knowing how much food or insulin to take, there's no way of going on with your day. Without taking insulin by one of the above mentioned methods, there's no way of living. Diet,exercise, some special  drink that you saw online,  none of those will work. Without insulin a type 1 will die within ONE WEEK. PERIOD.



But this is the painful reality.Id like to thank everyone in the Diabetes community who allowed me to use their words and pictures to create this video.

I hope our non diabetes friends and family learned a little more today.

I want thank Laura for sharing this video with us, I warn you it's heartbreaking, but its what she deals with daily.

More posts on what living with Type 1 Diabetes is like:


Lora said...

OMG!! That video is heartbreaking.

Diane D said...

thank you...i would like to share this, may I?

Heidi / D-Tales said...

Powerful video! Powerful post!

htimm=) said...

Great post! The video brought tears to my eyes and then Laura's video had me bawling! That is how we do it, just staying positive and rising above the pleading and crying. We do what we have to. I rarely have to deal with tears from my girl so it just broke my heart to see tough little Nate crying as Laura just stayed strong and positive!

Sarah said...

ugh...I saw Laura's video on FB the other day and it had me sobbing, just because people don't get it unless they see that. They think our kids are some amazing super human creatures that just suck it up - but it still hurts them every time. Even when they say it doesn't there is pain, there has to be. Sometimes I even see my husband cringe as he gives himself a shot, I can't imagine facing all those needles in my skin every day knowing it is the way I have to live. And he never complains. No he doesn't like it, but not once have I heard him complain. I can't wait for us all to have to rename our blogs, have new topics, and make new journeys that don't include d because it's been cured. I believe it's going to happen, I have to!
Thanks for posting this real entry about how it truly is for our children.

Mrs Jolly said...

I wish everyone could read this blog and that may just give them a little insite into what it is really like. The other day my son had a sensor put in and he cried so I know what it is like seeing your child so upset. Just know that I am so with you.

Penny said...

Thank you Lexi.

Reyna said...

Lexi, thank you. I think sadly the tears, the pain, the winces become so much a part of our day that I have forgotten what it is like to live without them now that type 1 has been a part of our life, Joe's life, for over 4 and a half years. The part that hurts the most is that Joe tries to hide the winces and tears from me...he knows it hurts me to see him hurt and he tries to lessen the burden of that.

This was so well done. I am going to share. Thank you, as always, for raising awareness...for your honesty...for your compassion.

Jill said...

OK...first time seeing Nate's video and I felt like someone was squeezing my heart while I watched it and ended up in full blow tears! Kacey is 11yrs old now and it's hard for me to think about diabetes life with a "little one". All I can say is....D-Momma's ROCK! Every one of you is amazing!

Lex~ Sooooo sorry you're having so much going on with J :( I've been out of the loop and I'm just catching back up. BIG HUGS girlie!!! If you ever wanna text just lemme know! You have my number :)

Misty said...

Awesome job Lexi! You're a Rock Star! Love all those brave kiddos!

And that's the first time I've seen Laura's video too. She's a Rock Star Mama too!

Lorraine of "This is Caleb..." said...

Nice job Lexxi.

I have to say, I think we've become numb to much of it - for which I am thankful. Since there is no other choice but to endure the piercings on a daily basis, I am glad that that Caleb has become somewhat calloused to them. How exponentially worse it would be if each time it was a big, drawn-out ordeal.

Nevertheless, it's good to be reminded that although this is our normal, every day existence, there is actually nothing normal about it.

Joanne said...

What a powerful video... I meant to send you Elise's picture, but it completely slipped my mind.

It blows me away how strong and brave our kids are... even through their tears.

Nikki of Our Diabetic Warrior said...

What a beautiful tribute to all of these children and their families for what they endure each and every day!

Their smiles speak a thousand words! These kids are strong and will NOT let diabetes get in their way of their hopes and dreams.

Thank you Lexi!

Wendy said...


sorry I can't type well when everything is all blurry.

This was beautiful.

Sweet Nate...oh Sweet Nate...how my heart aches for that sweet little bum. I held a 2 year old in my lap and had to poke her when she screamed "NO NO NO" at me....heartbreaking indeed, but a parent must do what a parent must do.

The collage video is awesome. Thank you so much for putting it together. It's perfect.

Anonymous said...

I just started to cry and there was no way to stop...
I saw myself in every word!
My name is Laurinda, I'm Portuguese and I have an 11 years old daughter type 1 since she was 8... after 3 years it stills hard ...very hard...

Anonymous said...

AMEN....all so true and real. The TEARS from the kids, OUR kids, our babies are so hard...WE are the ones having to "hurt" them to keep them alive.
G also says, "It's okay mom"...after we are done. "It just hurt this time". I hate hurting her.
You put it all in such wonderful words that I try to explain to "people"...family, friends....Great job...Blessings to all....k

Toucan Scraps said...

I remember when TJ was newly diagnosed at 2, one of us had to hold her down and still while the other gave an injection - I hated every moment. And recently with my newly diagnosed 5yo son, it took him a month to stop begging me not to and nearly 2 months before he stopped crying or screaming

Toucan Scraps said...

unfortunately not everyone gets a choice on pump or injections. we have to fight for the right to put our kids on a pump here in the UK.

Nan said...

excellent job Alexis!...and Laura!...and Nate...and Justice...and hiccuping Emma :)
us mamas really do so love our kiddos even when puncturing their tender skin...such a dichotomy :(
i was so tense watching little Nate, remembering C at that age...pass the tissues please...

Amy said...
This comment has been removed by the author.
Anonymous said...

Hi. Thanks for putting this info out there. My little boy is 2 years old and a type 1. He was diagnosed at 17 mos old. He's such a tough little guy, but I know it has to hurt him more than he lets on. I feel for all these kids and adults with Type 1. :( Praying for a cure!


Denise said...

well done Lex!

kjdeweese said...

Alexis - I was diagnosed at age 14 and am now 40. Never been in the hospital (except diagnosis), have two beautiful children from intense but doable pregnancies and wear a pump and Dexcom nowadays. I've been married 12 years and it still surprises me when my husband catches me turning in circles (like a puppy) trying to insert my Dexcom but fearing the pain. He always seems like it is odd. So, we must look very superhuman from the outside to lots of people. And some days, well we are. Get your son a nice cape. Some day in college he will need it! ;-)

Anonymous said...

That video inserting the omni-pod was heartbreaking to watch... poor baby! I would probably be bankrupt bribing him with toys every three days.. So much for the hype that Omni pod is painless insertion... I could see the baby flinch when the pod clicked in. EMLA, the size of a half dollar coin, if left on a good solid hour plus, can work well. One hour and 15 minutes to one hour and a half for peak anesthesization. We usd EMLA for a good year and a half, despite endo not really wanting to keep prescribing it. I would definitely try EMLA or LMX cream for the young ones.

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