I love the show The Biggest Loser.
I love watching the contestants and their journeys. I love watching them transform their bodies and their lives. I love watching the hell they go through in the gym! And Sweets likes to watch it, too.
I think it's a good show for her to watch. We talk about how hard the contestants work and the importance making good food choices. She likes watching them do the challenges.
Sure, I've gotten aggravated before with the way they ALWAYS refer to type 2 diabetes as just diabetes. It made me... not really angry but... irritated that one season the contestants wore the Dexcom Seven Plus CGM system. Cool -- but what about all those people who need it not for weight loss but to stay alive? I don't know... something about it just didn't sit right with me.
Overall, I love this show. I watch every week!
But this week.... Oy.
Sweets and I were watching the beginning of the show tonight as she was getting ready for bed. This week's theme was facing your biggest fear. And this season they have kids on the show. One of the kids had been diagnosed with pre diabetes. And she said that her biggest fear was sitting in a doctor's office and being told she has diabetes.
Sweets gave me a funny look. She said, "She's afraid of diabetes? I'm not afraid of diabetes."
I smiled.
That's the right attitude, kiddo. You got this.
And had it ended there....
But it didn't.
Something was said about how diabetes can be prevented through diet and exercise.
Sweets turned and looked at me with this face of confusion. It was a mix of "say what?" and "well that just is not true".
I immediately clarified that they were talking about type 2 diabetes and not type 1. I reassured her that nothing could have prevented her diabetes. No amount of exercise or healthy food could have prevented it or could make it go away. I explained how in type 2 the pancreas stops working slowly and in type 1 her body attacked itself and it happened much more quickly and there was no going back. There was some discussion of pumps and shots and when and how.
She was satisfied. She bopped off to bed and all was right in her world.
But I kept watching. And it just got worse.
The segment with the girl came on. They had her go talk with her school counselor who was diagnosed with type 2 diabetes as an adult. She talked about how she had to take her pills and test her blood sugar a few times a day and give herself a shot each night. And she gave herself a shot. And she talked about how angry she was that she had this disease and how hard it was and how it had changed her life.
I'm not really sure what all she said. All I could hear was the blood rushing to my head.
For some reason, it really upset me. And I was not expecting that.
Now, let me just say... diabetes sucks. Type 1, Type 2, LADA... all of it. It IS hard. It DOES change your life. I know that not everyone with Type 2 gets it because of a poor diet and lack of exercise. Sometimes genetics takes the choice away.
But in that moment....
Anger. Frustration.
I don't know if I wanted to yell or scream or cry.
I wanted to shout... "Oh POOR YOU. You give yourself ONE shot a day. You take PILLS. You test like what? Three, four times a day? CRY ME A RIVER, LADY! CRY ME A RIVER, BIGGEST LOSER!"
(Side note.... so I've been posting about how I'm coming to terms with this disease and how I don't exactly hate it anymore and see the good more than the bad.... That's all true. And so is the fact that there are still days.... when I don't. When I've had enough. When I'm still angry and sad and overwhelmed. Hey, what can I say? I'm just being real. It's a process.)
I just flew all over me.
The "reality" of diabetes that they are showing.
Well, guess what? THAT is not our reality. It might be similar. But that just scratches the surface.
MY reality is having to hold my three year old down FIVE times a day because she needed FIVE shots a day. A screaming, crying toddler begging her parents not to hurt her.
MY reality is counting every carbohydrate that my child has put into her mouth for the past FOUR YEARS.
MY reality is that no matter what I do, I can't control this disease. And when I don't get it right - SHE is the one who suffers.
MY reality is the constant nagging fear that this disease is going take her life.
HER reality is the countless tiny black spots on her fingers from the countless blood sugar tests.
HER reality is wearing a medical device 24 hours a day.
HER reality is needles. Not pills.
OUR reality is that we did NOTHING to bring this on. There was nothing we could do to prevent it. There is nothing that will make it go away. It's that it's not ME with this disease... it's my CHILD. The one person who I just want to protect. It my job to protect. And I can't.
I just wanted to scream at the tv... You keep saying diabetes this and diabetes that. Do you even know that there are two types? Would it kill you to make a distinction? You keep saying that it's going to kill you. You can control it with diet and exercise. Change your ways before it's too late. Here's your warning... don't become this lady who has to give herself one shot a day.
Well guess what, Biggest Loser? THAT is not my diabetes reality.
All I want is for you to at least acknowledge the difference.
Do we want children or adults to get diabetes because of poor diet and lack of exercise? Of course not. It's a problem. I know that. And I'm not saying type 1 is worse than type 2. It's not that. That's not the point.
The point is this...
I have a seven year old little girl. She is the bravest person I know. She told me tonight that her biggest fear is shots. And yet she gets shots. All the time. Just Friday she had a shot. And then on Saturday she had another needle inserted into her body to leave a small wire that would read her glucose levels. And then on Sunday she had yet another needle inserted into her body when she changed her insulin pump. She has had more shots in her the past four years than most people have in their entire lives. Probably a few times over.
This little girl deals with the highs and lows and frustrations and complications of this disease every single day. There is no end in sight. She did NOTHING to cause this disease. She was only three. Nothing could have stopped it.
She's used to hospitals and blood tests. She used to doctor appointments. She used to feeling different than the other kids.
This little girl who looked at me tonight and said, "I'm not afraid of diabetes". Watching that lady give herself a shot didn't scare her. She's seen worse. She's woken up from a low blood sugar induced seizure looking at paramedics. She's lost time from lows. She's been in the hospital with high blood sugar and ketones. She been really, really sick. She's fallen off the balance beam at gymnastics and had to leave school because her blood sugar is too high. And have I mentioned all the needles?
She's not afraid of diabetes. She doesn't remember a life without it.
As a parent of a child with type 1 diabetes, I just want you to "get" that.
Biggest Loser - Big FAIL
Tuesday, February 26, 2013
Thursday, February 21, 2013
Do you know what the H word is?
This reminds me of a story my Mom once told me. She taught first grade and reading for over 33 years. She has LOTS of good stories. But this one has always stuck with me.
One day, a student told her that another child had said the H word. Knowing six year olds like she does, Mom asked what the H word was. You never know. To them words like "underwear" or "fart" or "darn it" are considered bad words. The child whispered, "SHIT".
Hee hee!
But that's not the H word I'm talking about.
I'm talking a word that actually does begin with H.
HATE
It's not hard to remember waaaay back when I first started this blog. In some ways it feels like lifetimes ago and in other ways it feels like it was just yesterday. Sometimes I turn around and realize how far we've come on this journey and other times I feel like all I've done is walk in a circle and I'm right back where I started almost four years ago.
And my feeling about the H word is no different.
Shortly after Sweets was dx'd, I reached out into the abyss of the Internet and the blogosphere looking for someone, anyone who would understand what I was going through. I needed someone to help me. I needed someone who spoke my language. I needed someone who had been in my shoes. And I mean REALLY in my shoes. I was looking for a mom to a little girl who was dxd somewhere between 2 and 3 years old.
The first few months after dx were AWFUL for us. We had to hold her down for every. single. shot. She cried and screamed and begged us not to do it. I was a wreck. And I needed someone who had been there and could help me.
One of the first bloggers I found was Jill from Diabetes Sweeties. Jill is mom to Kacey - a spunky girl who happens to have Type 1. Kacey is a bit older than Sweets but I felt a connection. And so I read and read and read. I learned about their life with diabetes and the ups and downs they were experiencing.
And I'll never forget Kacey telling Jill something very profound. She told her Mom that she couldn't hate diabetes because it was a part of her and hating it would be like hating herself.
At the time, I thought that was some pretty powerful stuff coming from the heart of a little girl.
But you know what? I didn't get it.
Because I HATED diabetes.
Yeah, it was a part of my sweet one. But it was a part that I felt didn't belong there. A part that I would be glad to kick to the curb and never look or think twice about again.
I couldn't really wrap my head around the fact that anyone could actually.... NOT hate diabetes.
I wanted it gone. I wanted it obliterated. I was scared and angry and frustrated. I had seen enough blood, enough tears and enough pain.
To me, diabetes was a ugly scab on her perfect skin. I didn't feel like we had to hide it. But... truth be told, I would have been just as happy to see it disappear.
I've never forgotten those words.
And not long ago, they came back to me.
And I realized....
I get it.
Diabetes is a part of Sweets just like it's a part of Kacey. Just like it's a part of you or your child or your loved one.
It has become a part of her that is so integral to who she is that I couldn't separate the two if I tried. It's a part of her just like her sparkling blue eyes or her smattering of freckles or her super contagious giggle.
It was like an epiphany.
Diabetes isn't an ugly scab. It's actually.... dare I say it? Something beautiful.
Don't get me wrong. I'd still be happy for it to go away.
But here's the thing. It will never go away. Even if there was a cure tomorrow and we could throw all of our lancets and our strips and our insulin and pumps and our needles and on and on and on into a tremendous bon fire.
Diabetes would still be a part of her. Whether her pancreas worked or not.
Because it's more than a disease.
Because of diabetes, my child knows what it's like to endure.
Because of diabetes, my child knows what it's like to be different and why everyone should be treated with compassion and love.
Because of diabetes, my child has incredible empathy for others.
Because of diabetes, my child knows how to never give up.
Because of diabetes, my child knows her strength, her beauty, her confidence come from within.
Because of diabetes, my child sees people first and "disabilities" second.
Because of diabetes, my child truly understand equality.
Because of diabetes, my child has had extra practice with patience.
Because of diabetes, my child knows she is brave.
Because of diabetes, my child knows she is a fighter.
Because of diabetes, my child knows LOVE.
Because of diabetes, I know I'm stronger than I ever thought.
Because of diabetes, I am able to appreciate the small moments of beauty.
Because of diabetes, I am thankful for so much more than ever before.
Because of diabetes, I work extra hard to take nothing for granted.
Because of diabetes, I have more empathy.
Because of diabetes, I celebrate the triumphs.
Because of diabetes, I know perseverance.
Because of diabetes, I know LOVE.
Sure, there's a lot of other things we know. We know pain. We know fear. We know medical terms and procedures we never dreamed we would know. We know anger. We know frustration. We know worry. We know sleepless nights. We know exhaustion. We know helplessness.
If I could take this disease away from her, I would. In a second.
But it wouldn't matter. I've seen too much. She's seen too much.
It's taken almost four years, but I can stand here today and tell you that I get that statement now.
I now understand how diabetes can be such a part of you that you couldn't hate it. That hating it would be hating yourself.
Sure, it's ugly at times. Sometimes it's just plain awful.
And yes, we want that cure. We want the disease to stop wreaking havoc in her body. We want her to live a "normal" life free from testing and blood and pumps and cgms and carb counting and on and on and on.
Maybe you think I'm crazy. I don't blame you. This is so hard to put into words. I feel like I keep chasing this truth around and around and it's staying just out of my reach.
So let me try just one more time....
Do I hate that high blood sugars are like glass in her veins? That lows rob her brain of the sugar it needs to develop properly? That she feels singled out because she can't just eat out of the bag or go off with any friend's parents? That she is attached to devices 24/7? That all the needles HURT? That she is more likely to develop complications like blindness, heart disease, stroke..... than her peers? That she's had a seizure due to a low? That sometimes this disease scares her?
Yes. I do.
I hate those things.
But that's not the whole story.
Diabetes is all of those things. I would love for those things to go away.
But diabetes is more than that.
It's a part of who she is now.
It's a part of who I am.
It's like when your ice cubes melt into your coke. (And for those of you that know me... YES, I know I have a problem. I just love Coke so much. Quit laughing.) You couldn't separate the two again if you tried (and believe me, if I could figure it out I would). You can't go back.
You're left with a new drink that may be a little bit different from the original. But it's not all bad. I'd certainly never say I hated my Coke just because of a few ice cubes. Sure, I might try to fish them out. But I still love my coke.
Of course, too much is not a good thing. Too much ice messes with the flavor. Constant complaining because there is ice in my cup is just going to ruin a perfectly good coke. Just like too much emphasis on diabetes or too much negativity is going mess with your outlook on life.
It's ok to acknowledge the parts we don't like.
It's just that sooner or later, we see the bigger picture. The ice got put in our cup. For good or bad - it's there. We can't take it out. We can't go back. We might as well look for how it enhances the drink and move on!
It's taken four long years, but I can now say that I can enjoy my drink. Truly enjoy it. Dare I say that I might actually like the flavor better now?
Sure, there are parts of diabetes that I don't like. It's no bed or roses.
BUT.... for as bad as those bad parts are.... there has been so much good. I didn't even mention the friendships we have made. And that good overshadows the bad. Crazy - but it does. Most of the time.
So my daughter has Type 1 diabetes. And I can't hate it.
Because she is perfect. Diabetes and all.
This reminds me of a story my Mom once told me. She taught first grade and reading for over 33 years. She has LOTS of good stories. But this one has always stuck with me.
One day, a student told her that another child had said the H word. Knowing six year olds like she does, Mom asked what the H word was. You never know. To them words like "underwear" or "fart" or "darn it" are considered bad words. The child whispered, "SHIT".
Hee hee!
But that's not the H word I'm talking about.
I'm talking a word that actually does begin with H.
HATE
It's not hard to remember waaaay back when I first started this blog. In some ways it feels like lifetimes ago and in other ways it feels like it was just yesterday. Sometimes I turn around and realize how far we've come on this journey and other times I feel like all I've done is walk in a circle and I'm right back where I started almost four years ago.
And my feeling about the H word is no different.
Shortly after Sweets was dx'd, I reached out into the abyss of the Internet and the blogosphere looking for someone, anyone who would understand what I was going through. I needed someone to help me. I needed someone who spoke my language. I needed someone who had been in my shoes. And I mean REALLY in my shoes. I was looking for a mom to a little girl who was dxd somewhere between 2 and 3 years old.
The first few months after dx were AWFUL for us. We had to hold her down for every. single. shot. She cried and screamed and begged us not to do it. I was a wreck. And I needed someone who had been there and could help me.
One of the first bloggers I found was Jill from Diabetes Sweeties. Jill is mom to Kacey - a spunky girl who happens to have Type 1. Kacey is a bit older than Sweets but I felt a connection. And so I read and read and read. I learned about their life with diabetes and the ups and downs they were experiencing.
And I'll never forget Kacey telling Jill something very profound. She told her Mom that she couldn't hate diabetes because it was a part of her and hating it would be like hating herself.
At the time, I thought that was some pretty powerful stuff coming from the heart of a little girl.
But you know what? I didn't get it.
Because I HATED diabetes.
Yeah, it was a part of my sweet one. But it was a part that I felt didn't belong there. A part that I would be glad to kick to the curb and never look or think twice about again.
I couldn't really wrap my head around the fact that anyone could actually.... NOT hate diabetes.
I wanted it gone. I wanted it obliterated. I was scared and angry and frustrated. I had seen enough blood, enough tears and enough pain.
To me, diabetes was a ugly scab on her perfect skin. I didn't feel like we had to hide it. But... truth be told, I would have been just as happy to see it disappear.
I've never forgotten those words.
And not long ago, they came back to me.
And I realized....
I get it.
Diabetes is a part of Sweets just like it's a part of Kacey. Just like it's a part of you or your child or your loved one.
It has become a part of her that is so integral to who she is that I couldn't separate the two if I tried. It's a part of her just like her sparkling blue eyes or her smattering of freckles or her super contagious giggle.
It was like an epiphany.
Diabetes isn't an ugly scab. It's actually.... dare I say it? Something beautiful.
Don't get me wrong. I'd still be happy for it to go away.
But here's the thing. It will never go away. Even if there was a cure tomorrow and we could throw all of our lancets and our strips and our insulin and pumps and our needles and on and on and on into a tremendous bon fire.
Diabetes would still be a part of her. Whether her pancreas worked or not.
Because it's more than a disease.
Because of diabetes, my child knows what it's like to endure.
Because of diabetes, my child knows what it's like to be different and why everyone should be treated with compassion and love.
Because of diabetes, my child has incredible empathy for others.
Because of diabetes, my child knows how to never give up.
Because of diabetes, my child knows her strength, her beauty, her confidence come from within.
Because of diabetes, my child sees people first and "disabilities" second.
Because of diabetes, my child truly understand equality.
Because of diabetes, my child has had extra practice with patience.
Because of diabetes, my child knows she is brave.
Because of diabetes, my child knows she is a fighter.
Because of diabetes, my child knows LOVE.
Because of diabetes, I know I'm stronger than I ever thought.
Because of diabetes, I am able to appreciate the small moments of beauty.
Because of diabetes, I am thankful for so much more than ever before.
Because of diabetes, I work extra hard to take nothing for granted.
Because of diabetes, I have more empathy.
Because of diabetes, I celebrate the triumphs.
Because of diabetes, I know perseverance.
Because of diabetes, I know LOVE.
Sure, there's a lot of other things we know. We know pain. We know fear. We know medical terms and procedures we never dreamed we would know. We know anger. We know frustration. We know worry. We know sleepless nights. We know exhaustion. We know helplessness.
If I could take this disease away from her, I would. In a second.
But it wouldn't matter. I've seen too much. She's seen too much.
It's taken almost four years, but I can stand here today and tell you that I get that statement now.
I now understand how diabetes can be such a part of you that you couldn't hate it. That hating it would be hating yourself.
Sure, it's ugly at times. Sometimes it's just plain awful.
And yes, we want that cure. We want the disease to stop wreaking havoc in her body. We want her to live a "normal" life free from testing and blood and pumps and cgms and carb counting and on and on and on.
Maybe you think I'm crazy. I don't blame you. This is so hard to put into words. I feel like I keep chasing this truth around and around and it's staying just out of my reach.
So let me try just one more time....
Do I hate that high blood sugars are like glass in her veins? That lows rob her brain of the sugar it needs to develop properly? That she feels singled out because she can't just eat out of the bag or go off with any friend's parents? That she is attached to devices 24/7? That all the needles HURT? That she is more likely to develop complications like blindness, heart disease, stroke..... than her peers? That she's had a seizure due to a low? That sometimes this disease scares her?
Yes. I do.
I hate those things.
But that's not the whole story.
Diabetes is all of those things. I would love for those things to go away.
But diabetes is more than that.
It's a part of who she is now.
It's a part of who I am.
It's like when your ice cubes melt into your coke. (And for those of you that know me... YES, I know I have a problem. I just love Coke so much. Quit laughing.) You couldn't separate the two again if you tried (and believe me, if I could figure it out I would). You can't go back.
You're left with a new drink that may be a little bit different from the original. But it's not all bad. I'd certainly never say I hated my Coke just because of a few ice cubes. Sure, I might try to fish them out. But I still love my coke.
Of course, too much is not a good thing. Too much ice messes with the flavor. Constant complaining because there is ice in my cup is just going to ruin a perfectly good coke. Just like too much emphasis on diabetes or too much negativity is going mess with your outlook on life.
It's ok to acknowledge the parts we don't like.
It's just that sooner or later, we see the bigger picture. The ice got put in our cup. For good or bad - it's there. We can't take it out. We can't go back. We might as well look for how it enhances the drink and move on!
It's taken four long years, but I can now say that I can enjoy my drink. Truly enjoy it. Dare I say that I might actually like the flavor better now?
Sure, there are parts of diabetes that I don't like. It's no bed or roses.
BUT.... for as bad as those bad parts are.... there has been so much good. I didn't even mention the friendships we have made. And that good overshadows the bad. Crazy - but it does. Most of the time.
So my daughter has Type 1 diabetes. And I can't hate it.
Because she is perfect. Diabetes and all.
Wednesday, February 13, 2013
We had a spectacular Saturday.
And by spectacular, I mean spectacularly suck-tastic.
Saturday was the day we had to go get Sweet's annual labs drawn. We go every 6-12 months for an arm draw. She needs to fast as they are testing for cholesterol, thyroid, and celiac.
We were not worried. Last time was easy peasy. She breezed in the room with no fussing. The nurse was good and it was over faster than you can say "numbing cream" which we always use - if for nothing other than it helps mentally.
This time was the exact opposite.
It was a disaster from start to finish.
As soon as we got to the room, Sweets panicked. She actually stopped in the doorway and wouldn't budge. I may or may not have had to force her in with a swift knee to rump.
She wanted to sit on my lap so we settled into the chair and the nurse got ready to put the band on her arm. She refused to give the nurse her arm. I was surprised at how... reluctant? difficult? she was being. She finally gave the nurse her arm and we went over the things she does to calm herself down. She does NOT like anyone to talk. She counts in her head. And she wants to watch. The nurse started trying to distract her and that only makes her anxiety skyrocket. We learned a long time ago that she does best if she can see what is going on.
The nurse got the needle in but couldn't get the vein. She poked around for a minute and then pulled it out. Sweets was NOT happy that she had to do it again.
The nurse tried again and this time she got the vein right away.
I exhaled. I exhaled WAY too soon.
A minute into the draw and Sweets said she was feeling like she was going to throw up.
We grabbed a trash can and she was... well, she hadn't eaten since dinner the night before so she wasn't doing anything. She stood up and her eyes rolled back into her head and I thought she was going to hit the floor.
I pulled her back onto my lap but it wasn't a second before she said she was going to get sick again. But this time she started stamping her feet and flailing her arms and moaning. Her eyes kept rolling back into her head and she was clammy and wet and gray.
I pulled her back onto my lap and laid her down. Her eyes were still rolling around and then she started saying she was tired. And I should leave her alone so she could go to sleep.
We tested her bg when stared with the stamping and flailing. She was at 130. I sent J out to the car to get juice (because, of course, I didn't have it in my purse and believe it or not, the nurses couldn't find any). We had her drink a little bit and started coming back to us.
By the time we left the outpatient hospital center, she was tired and a little stressed but doing ok.
I was not.
I asked the nurse if that was a normal-ish reaction to a blood draw and she said she had never seen anything like it before. So that was comforting.
My awesome friend, Wendy (who is also a nurse and D Mama extraordinaire), helped explain to me what happened to my girl. She explained that is was a classic vasovagal response. I read up on it thanks to Google and some awesome links she sent me. And although awful, it sounds like a harmless occurrence.
The thing that really stuck with me was how one site described it. They described it as a feeling of "impending death".
Gah. That makes me sick. My poor girl.
I think I'm suffering from PTBDD (post traumatic blood draw disorder). It was really scary. It was just too much like the seizure she had. I wasn't as panicked but it was same feeling of "what the heck is going on? How do I make it stop?" and "Do NOT leave me little girl. Eyes OPEN."
Like I said, she's fine. She bee bopped around that day just like normal.
But I'm not. Not yet.
It just takes a little more time for me to return to normal. And I'm left thinking... THIS is our normal. How did THIS become just another weekend event?
Sometimes with D it feels like two steps forward and once step back.
So even though my heart is still hurting...
Even though I'm not completely over it...
Even though I feel like I need to stop and catch my breath...
I'm able to see that I've taken - WE have taken - a lot more steps forward than steps back.
And while it would be really easy for me to rant and scream and proclaim just how crappy diabetes is.... this really wasn't diabetes. I mean, TECHNICALLY, we wouldn't have been there if it wasn't for good ol' diabetes. And D IS a favorite scapegoat... But this was a reaction that people have. It was scary and awful and really had nothing to do with diabetes.
I can see that distinction now.
Saturday night we went to church. We sang a new song. It was beautiful. And they lyrics really stuck with me.
All this pain
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All aroundHope is springing up from this old groundOut of chaos life is being found in You
You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us
Saturday morning was really ugly. It was frightening. It was chaotic.
Just like diabetes.
But at the end of the day...
It's still all those things.
I'm just learning to see the beautiful things in the midst of the chaos. In the midst of the fear. In the midst of the ugly.
And the beautiful things... they are so much bigger than the rest.
The love.
The beauty.
The compassion.
The caring.
The tenderness.
The honesty.
The laughter.
The faith.
The hope.
My daughter.
She's my beautiful thing.
And she outshines the chaos. She outshines the fear. She outshines the ugly. She outshines the darkness.
So as long as I've got her, every Saturday is Spectacular.
One horrid blood draw won't change that.
And by spectacular, I mean spectacularly suck-tastic.
Saturday was the day we had to go get Sweet's annual labs drawn. We go every 6-12 months for an arm draw. She needs to fast as they are testing for cholesterol, thyroid, and celiac.
We were not worried. Last time was easy peasy. She breezed in the room with no fussing. The nurse was good and it was over faster than you can say "numbing cream" which we always use - if for nothing other than it helps mentally.
This time was the exact opposite.
It was a disaster from start to finish.
As soon as we got to the room, Sweets panicked. She actually stopped in the doorway and wouldn't budge. I may or may not have had to force her in with a swift knee to rump.
She wanted to sit on my lap so we settled into the chair and the nurse got ready to put the band on her arm. She refused to give the nurse her arm. I was surprised at how... reluctant? difficult? she was being. She finally gave the nurse her arm and we went over the things she does to calm herself down. She does NOT like anyone to talk. She counts in her head. And she wants to watch. The nurse started trying to distract her and that only makes her anxiety skyrocket. We learned a long time ago that she does best if she can see what is going on.
The nurse got the needle in but couldn't get the vein. She poked around for a minute and then pulled it out. Sweets was NOT happy that she had to do it again.
The nurse tried again and this time she got the vein right away.
I exhaled. I exhaled WAY too soon.
A minute into the draw and Sweets said she was feeling like she was going to throw up.
We grabbed a trash can and she was... well, she hadn't eaten since dinner the night before so she wasn't doing anything. She stood up and her eyes rolled back into her head and I thought she was going to hit the floor.
I pulled her back onto my lap but it wasn't a second before she said she was going to get sick again. But this time she started stamping her feet and flailing her arms and moaning. Her eyes kept rolling back into her head and she was clammy and wet and gray.
I pulled her back onto my lap and laid her down. Her eyes were still rolling around and then she started saying she was tired. And I should leave her alone so she could go to sleep.
We tested her bg when stared with the stamping and flailing. She was at 130. I sent J out to the car to get juice (because, of course, I didn't have it in my purse and believe it or not, the nurses couldn't find any). We had her drink a little bit and started coming back to us.
By the time we left the outpatient hospital center, she was tired and a little stressed but doing ok.
I was not.
I asked the nurse if that was a normal-ish reaction to a blood draw and she said she had never seen anything like it before. So that was comforting.
My awesome friend, Wendy (who is also a nurse and D Mama extraordinaire), helped explain to me what happened to my girl. She explained that is was a classic vasovagal response. I read up on it thanks to Google and some awesome links she sent me. And although awful, it sounds like a harmless occurrence.
The thing that really stuck with me was how one site described it. They described it as a feeling of "impending death".
Gah. That makes me sick. My poor girl.
I think I'm suffering from PTBDD (post traumatic blood draw disorder). It was really scary. It was just too much like the seizure she had. I wasn't as panicked but it was same feeling of "what the heck is going on? How do I make it stop?" and "Do NOT leave me little girl. Eyes OPEN."
Like I said, she's fine. She bee bopped around that day just like normal.
But I'm not. Not yet.
It just takes a little more time for me to return to normal. And I'm left thinking... THIS is our normal. How did THIS become just another weekend event?
Sometimes with D it feels like two steps forward and once step back.
So even though my heart is still hurting...
Even though I'm not completely over it...
Even though I feel like I need to stop and catch my breath...
I'm able to see that I've taken - WE have taken - a lot more steps forward than steps back.
And while it would be really easy for me to rant and scream and proclaim just how crappy diabetes is.... this really wasn't diabetes. I mean, TECHNICALLY, we wouldn't have been there if it wasn't for good ol' diabetes. And D IS a favorite scapegoat... But this was a reaction that people have. It was scary and awful and really had nothing to do with diabetes.
I can see that distinction now.
Saturday night we went to church. We sang a new song. It was beautiful. And they lyrics really stuck with me.
All this pain
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All aroundHope is springing up from this old groundOut of chaos life is being found in You
You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us
Saturday morning was really ugly. It was frightening. It was chaotic.
Just like diabetes.
But at the end of the day...
It's still all those things.
I'm just learning to see the beautiful things in the midst of the chaos. In the midst of the fear. In the midst of the ugly.
And the beautiful things... they are so much bigger than the rest.
The love.
The beauty.
The compassion.
The caring.
The tenderness.
The honesty.
The laughter.
The faith.
The hope.
My daughter.
She's my beautiful thing.
And she outshines the chaos. She outshines the fear. She outshines the ugly. She outshines the darkness.
So as long as I've got her, every Saturday is Spectacular.
One horrid blood draw won't change that.
Friday, February 8, 2013
You take the good.
You take the bad.
You take them both and there you have life with D!
(You're singing that aren't you?)
That was our evening.
A little good. A little bad.
I'll start with the good.
Tonight was gymnastics.
Gymnastics has been kicking our rear ends the past few... weeks? Months?
Sweets runs on the low side at school - especially in the afternoons. Activity has really been a challenge for us this year. As soon as she gets home, she wants a snack because her lunch is so early in the day. That's fine. Except on gymnastics day when snack insulin peaks during class and sends her crashing.
We have tried an unbolused snack. We have tried a minus basal. We have tried turning the pump off. We have tried combinations of the three.
Nothing works.
She either is sky high or she goes low anyway.
SO. FRUSTRATING.
One good thing about this is Sweetpea's incredible, awesome, amazing gymnastics coach. Sweets has been with Miss B for a couple of years. She is so sweet! When Sweets broke her arm last year, Miss B sent her a get well card! But her awesomeness is proven in how she handles diabetes.
Miss B can tell when Sweets is low. She gives us a sign if she thinks something is off. And 99% of the time, she is right. That's amazing. NO ONE else can tell. She just KNOWS her. She knows her balance and strength and personality and can tell right away if something is off. We LOVE her!
Today's good news is that we FINALLY got it right!
I don't know how. It was most likely a combination of things, including the retrograde of Mars in relation to the third moon of Venus or something. I don't care. I'll take it.
She went into class with this number...
And returned at this number...
We turned the pump off and boosted her covered snack a little with a few carbs.
And, of course, Miss B said she was ON today and did great!
Now for the not so good...
While I'm sitting there watching Sweets do cartwheels on the balance beam I can't help but overhear the people next to me talking.
SHE works in a vet office. HE is intrigued and asking her lots of questions.
SHE is telling him about the surgery they do there and HE is asking questions about the facility. (I'm eavesdropping because it's our vet and I'm curious as to what she has to say since I really like it!) SHE tells him they do all different kinds of procedures and have lots of different medicines on hand to treat any kind of illness. Medicines including insulin.
HE says, "Insulin? You mean dogs can get treated for diabetes too? Do people really do that"
SHE answers that yes, they can. And that it often requires TWO shots a day.
I'm sitting there thinking... "TWO?!? Try SIX. PLUS finger sticks."
And then HE says... "That has to be really expensive."
SHE replies that yes, it is.
HE says, "Pretty soon we're gonna need Obama Care for dogs. People are going to expect us to pay to keep their dogs alive, too. I grew up on a farm. When a dog was sick or had diabetes you didn't treat it. They just went under the stairs and died."
Wow.
That's all I've got. Wow.
This comment bothered me. It isn't about Obama Care or health care. It's the ignorance behind that comment. It's the complete lack of concern for life.
I really try to have a sense of humor about diabetes. I think it's important to laugh at ourselves and this life. I try not to take everything so seriously. And maybe HE was just trying to be funny.
But I didn't laugh.
I wanted to say...
See that little girl out there? The one in the white t-shirt that says "Walk to Cure" on it. The one flipping over the bars and doing roundoffs across the floor. The one with the kinda curly brown hair and sparkling blue eyes. The one with the big smile and contagious laugh.
She has that disease you're talking about.
She's lived with it longer than she's lived without it. She didn't ask for it. She did nothing to make it happen. She couldn't have stopped it if she had tried.
It IS expensive.
You see that bag in my purse? Those are the supplies we carry with us at all times. The needles we use to prick her fingers 8-10 times a day. The special medicine we are to give her if she has a seizure or passes out. And yes, it's a needle too.
You see that cell phone thing I keep looking at? That's keeping track of her blood glucose. Because we have to watch it all the time. And yes, it's another needle. In her arm. A sensor she wears all the time and is changed once a week.
And then there's her insulin pump. No, it doesn't mean we don't have do anything. It's inserted every three days. Yup, another needle. I can't even begin to tell you how complicated THAT is.
She's having a good day today. Today you see her at her best. But some weeks she can't stay on the beam. Some weeks she falls off because she is low and too dizzy to stay on. Some weeks she doesn't have the strength to lift herself up and over the bars because she is too high and feeling sluggish.
That little girl that looks as healthy as everyone else.
Is she too much of an imposition to keep alive? Is it too much to ask that she have access to health care? Would you just put her under the stairs, too? Would you just let her die so you didn't have to deal with it?
What do you even say in a situation like that?
I said nothing. It wasn't my conversation.
I just kept my eyes on my girl. And played a little "Candy Crush" when I couldn't take it any longer!
All I can do is shake my head...
And know how true this is.
You take the bad.
You take them both and there you have life with D!
(You're singing that aren't you?)
That was our evening.
A little good. A little bad.
I'll start with the good.
Tonight was gymnastics.
Gymnastics has been kicking our rear ends the past few... weeks? Months?
Sweets runs on the low side at school - especially in the afternoons. Activity has really been a challenge for us this year. As soon as she gets home, she wants a snack because her lunch is so early in the day. That's fine. Except on gymnastics day when snack insulin peaks during class and sends her crashing.
We have tried an unbolused snack. We have tried a minus basal. We have tried turning the pump off. We have tried combinations of the three.
Nothing works.
She either is sky high or she goes low anyway.
SO. FRUSTRATING.
One good thing about this is Sweetpea's incredible, awesome, amazing gymnastics coach. Sweets has been with Miss B for a couple of years. She is so sweet! When Sweets broke her arm last year, Miss B sent her a get well card! But her awesomeness is proven in how she handles diabetes.
Miss B can tell when Sweets is low. She gives us a sign if she thinks something is off. And 99% of the time, she is right. That's amazing. NO ONE else can tell. She just KNOWS her. She knows her balance and strength and personality and can tell right away if something is off. We LOVE her!
Today's good news is that we FINALLY got it right!
I don't know how. It was most likely a combination of things, including the retrograde of Mars in relation to the third moon of Venus or something. I don't care. I'll take it.
She went into class with this number...
And returned at this number...
We turned the pump off and boosted her covered snack a little with a few carbs.
And, of course, Miss B said she was ON today and did great!
Now for the not so good...
While I'm sitting there watching Sweets do cartwheels on the balance beam I can't help but overhear the people next to me talking.
SHE works in a vet office. HE is intrigued and asking her lots of questions.
SHE is telling him about the surgery they do there and HE is asking questions about the facility. (I'm eavesdropping because it's our vet and I'm curious as to what she has to say since I really like it!) SHE tells him they do all different kinds of procedures and have lots of different medicines on hand to treat any kind of illness. Medicines including insulin.
HE says, "Insulin? You mean dogs can get treated for diabetes too? Do people really do that"
SHE answers that yes, they can. And that it often requires TWO shots a day.
I'm sitting there thinking... "TWO?!? Try SIX. PLUS finger sticks."
And then HE says... "That has to be really expensive."
SHE replies that yes, it is.
HE says, "Pretty soon we're gonna need Obama Care for dogs. People are going to expect us to pay to keep their dogs alive, too. I grew up on a farm. When a dog was sick or had diabetes you didn't treat it. They just went under the stairs and died."
Wow.
That's all I've got. Wow.
This comment bothered me. It isn't about Obama Care or health care. It's the ignorance behind that comment. It's the complete lack of concern for life.
I really try to have a sense of humor about diabetes. I think it's important to laugh at ourselves and this life. I try not to take everything so seriously. And maybe HE was just trying to be funny.
But I didn't laugh.
I wanted to say...
See that little girl out there? The one in the white t-shirt that says "Walk to Cure" on it. The one flipping over the bars and doing roundoffs across the floor. The one with the kinda curly brown hair and sparkling blue eyes. The one with the big smile and contagious laugh.
She has that disease you're talking about.
She's lived with it longer than she's lived without it. She didn't ask for it. She did nothing to make it happen. She couldn't have stopped it if she had tried.
It IS expensive.
You see that bag in my purse? Those are the supplies we carry with us at all times. The needles we use to prick her fingers 8-10 times a day. The special medicine we are to give her if she has a seizure or passes out. And yes, it's a needle too.
You see that cell phone thing I keep looking at? That's keeping track of her blood glucose. Because we have to watch it all the time. And yes, it's another needle. In her arm. A sensor she wears all the time and is changed once a week.
And then there's her insulin pump. No, it doesn't mean we don't have do anything. It's inserted every three days. Yup, another needle. I can't even begin to tell you how complicated THAT is.
She's having a good day today. Today you see her at her best. But some weeks she can't stay on the beam. Some weeks she falls off because she is low and too dizzy to stay on. Some weeks she doesn't have the strength to lift herself up and over the bars because she is too high and feeling sluggish.
That little girl that looks as healthy as everyone else.
Is she too much of an imposition to keep alive? Is it too much to ask that she have access to health care? Would you just put her under the stairs, too? Would you just let her die so you didn't have to deal with it?
What do you even say in a situation like that?
I said nothing. It wasn't my conversation.
I just kept my eyes on my girl. And played a little "Candy Crush" when I couldn't take it any longer!
All I can do is shake my head...
And know how true this is.
Thursday, February 7, 2013
Monday.
We were tired from the blood sugar roller coaster that was our weekend.
I was at work. You know, working. And I got a text from Jason.
"Are you there?"
I always have my phone on me. Just in case. You never know...
My first thought was that something was wrong. She had crashed or was super high or something.
"Yes. What's up?"
His response was just two words.
DC BOUND
Followed by this picture...
SHUT THE FRONT DOOR!
Are you kidding me?!?
Sweets was selected as a delegate to JDRF's Children's Congress!
I was SHOCKED. I did not expect for her to be chosen this year. Over 1500 children applied. Only 150 were chosen. Those are not good odds!
But somehow.... this is her year! What an incredible honor!
I made Jason wait until I got home from work to tell her.
We told her we had a surprise for her and let her read the letter herself. This is a little clip... I love the look on her face when she realizes what it means!
We are all so very excited!
Sweets LOVES Washington. I mean LOVES! She has been obsessed with it since we went a few years ago. We recently watched a special on HGTV about decorating the White House at Christmas. She was intrigued that the Oval Office was really OVAL! And the other day she said to me, "Mom, I want to be one of the volunteers who helps decorate the White House for Christmas. That would be a great job! Do they decorate the Oval Office?" I told her I didn't know but that probably not because that's the president's office and no one really gets to go in there. "Not even the dog?!?" she asked. And then she said, "Well, I'm going to decorate and I'm going to find a way in there." HA! Look out Washington!
I'm thrilled for us to have this opportunity to advocate! Since getting involved with JDRF close to four years ago, I have found that advocating is a passion of mine. I truly feel that telling our stories - especially IN PERSON - really makes an impact. It's easy to think that we are just one person. One voice. And that nothing we do really matters. But that's not true. And come on... who can say no to that face?!?
I am so looking forward to sharing this journey with you!
Monday, February 4, 2013
I love Diabetes Art Day! I love creating and having the reason to do so!
Diabetes Art Day was created by LeeAnn Thill of The Butter Compartment as a way to express yourself and tell your story about life with diabetes - in a creative and visual way!
This year I decided to go a little non-traditional in my art. I knew exactly what I wanted to do!
I saved some old vials. I kept some Apidra vials (that's the insulin Sweets uses) to make ornaments out of at Christmas and never got around to it. And, for some reason, I kept the vial of Glucagon that we had to give Sweets almost two years ago when she had a seizure from a low. I don't know why I kept it. I just did.
And today I turned them into something else. Something beautiful.
My original idea was to make them into necklaces. And I may still do that. But I also think they are really pretty just standing alone. Or in a pair.
This is the vial of Apidra. I filled it with blue sprinkles. To me, it represents BLUE hope, cupcakes, sparkle, and life. It represents all the things that diabetes can not take from you.
It's amazing to me that the substances in these little vials keep my child alive. It's humbling. It's powerful.
I would love to wear these as a daily reminder of the fragility of life, the strength of a person, and the blessings diabetes has brought into our life.
To check out all the D Art Day submissions, click HERE!
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