Friday, September 30, 2011

Diabetic Party Mix

And for your entertainment on a Friday...
Grace moving and dancing to "Twist My Hips'

(There are only 47 more movies like this one on my Photo Booth. Dear Lord.)

Happy Friday everyone!

Tuesday, September 27, 2011

Apidra: The Smackdown

Oh Apidra, how I love and loathe thee.

About five weeks ago I switched Grace over from Novolog to Apidra in her OmniPod insulin pump. And things went swimmingly. Highs were coming down faster, we were not seeing a high postprandial spike, and it really seemed to work faster for Grace. I liked it. I saw less insulin being used more productively for her. I changed basals, I:C ratios and correction factors, and all was well. Honestly, all was well for about 3-4 weeks.

Until this happened.

And yesterday happened.

Quick synopsis - I realized that Grace may need to change her Pod every 48 hours, because of this issue with Apidra. It was literally conking out at 48 hours in the Pod. Not consistently and not every time, but it's like waiting for the floor to drop out from underneath you. It's like playing Tower of Terror with the pump. Honest, that's what it feels like to me!

This was not sitting well with Grace. She wanted the full three days out of her pump sites and who can blame her? The damn thing hurts when it goes in! I wanted that too, as we got a full three days, and sometimes a few bonus hrs, out of each Pod with Novolog. I told her of my new plan, that we would keep our eyes peeled at the 48 hour mark, and when the numbers started to skyrocket after 48 hours, we would change it. Maybe we would get three days out of a Pod, it had happened before with Apidra. That was our game plan, but really, why is watching your child like a hawk for every hour after the two day mark any kind of rational diabetes management, for anyone frankly?!

Sorry for the little sidetrack...

Which brings us to yesterday.

Grace woke up at a beautiful 125. The magic 48 hour mark was at 12:30 pm.
10:30 am classroom check - 210/190. Hmmmm, little high, suspicion begins.
11:45 am lunch check - 205. OK, well she should not have gone UP since the correction for the 190 happened an hour ago and she's had no food since breakfast
3:30 pm - 410. Crap. Recheck of 388. Double crap. Ketones of .3

I look into the logbook and it hits me. The bewitching hour of 48 hours is past, 3 hours past. That bewitching hour would have been at 12:30 pm today.

 It's almost like the Apidra turns to water in her pump after 48 hours.

We change her pump site, and I use the newly opened Apidra, the same vial that I filled this pump with. I attempt a valiant correction of 2 units through her pump, based on the 388 reading. I give her a shot of 1 unit in her arm, from the vial of Apidra, frankly, to prove the point and see if this is really how it goes.

I check 15 minutes later and she is 407. Four frickin oh seven. That is UP!
It's like trying to stop the freight train by sticking your foot out the train door and dragging it on the ground, oh, while wearing flip flops. Nothing good is going to come of it.

I pull Chuck in from outside and say, we need to convene the team here. What's our game plan?
We agree, check in over the next hour and if she has not lowered by at least 30 points, we pull the plug on this pump. We change her site, and we do it with Novolog.

Did I mention this was all happening at dinner time and Grace is starving. I will not let her eat. I give her a mozzarella cheesestick to hold her over. and a piece of chicken. Oh and two slices of ham. And Grace is crying. Cause it sucks to be 388 and climbing. I can SEE it in her, she is not herself.

The next reading? 429.
My friends, that is NOT 30 points lower.

The next reading? 402

The next reading? 399
This is one hour after the correction through the pump AND the arm dose.

Plan goes into action.

One Pod filled with Novolog. Dose of 1.0 unit through the new site. One dose of 1.0 unit given by injection in her arm.

Go to work Novolog, go to work.

30 minutes later... 293
1 hour later... 168
2 hours later... 74
3 hours later... 59
Suspend for 30 minutes and a juice and 2 tabs later... 101

So, now the question is - did some of the Apidra bring her down at all or is this all the Novolog? All I do know is that for close to 3 hours, Apidra did not budge her, at all. It's like it wasn't even being dosed to her. A few thoughts - was she climbing so high that I was just slowing down the high by the dose through the arm, but clearly it wasn't enough to move her down? Did the pump conk out and only the 1.0 unit of Apidra through injection work? Is heat affecting Apidra - her tummy site is a warm place for it. Or was this coming down from the high the work of the new pump filled with Novolog and the 1.0 unit of Novolog through her shot?

I have talked with others about Apidra in their OmniPod. Some are doing great, no problems at all. Some are experiencing the same issue as us - the 48 hour mark spells doom for Apidra in the Pod.

For now, I am out of the ring in the match with Apidra. It's back to Novolog for us for a little bit, until I have the courage to try Apidra again.

Friday, September 23, 2011

Oh Blog, how I have neglected thee!

This is how I feel, except I don't even hardly Twitter!
I have been ultra-busy lately.
I am behind on blog reading, commenting and obviously writing.
Hoping to change that this weekend.

Some upcoming posts...
...being a badass (hee hee hee)
...logging numbers and this damn logbook

Happy Friday everyone!

Saturday, September 17, 2011

Penny & Grace's 30 - Invisible Illness Week

Invisible Illness Week - 30 Things Meme
There have been such great ones out there - Kerri, Abby, JonahMeri and Reyna for starters. It only felt right to join in. I hope others do too.

1. The illness I live with is: Type 1 Diabetes (ok, I live with it, but Grace LIVES WITH it)
2. I was diagnosed with it in the year: 1999. January 9, 2009 to be exact, at about 2 am in the morning.
3. But I had symptoms since: About two weeks before Grace's diagnosis - lots of water drinking, hunger like you wouldn't even believe and her size 5 jeans still fit her just before Christmas, something I was surprised at, but pushed to the back of my mind as a growth spurt. 
4. The biggest adjustment I've had to make is: For me, it's the constancy of it, the constant thought in the back of my mind of thinking about it 24/7/365. I often tell people this tale  - You know with autism, and my oldest daughter, I could take a day off from the therapies, the interventions, the never-ending of it all. I could plop her in front of the TV when she was 3 and literally take the day off. And I admit it, I did that a few times, cause I needed my sanity and I would have lost it otherwise. She was still gonna be autistic whether she watched a day of TV or not. I could take off. With diabetes, I cannot. There is no day off from it. 
For Grace, I would say the biggest adjustment is not being so carefree, as much as I promote it with her. Being able to just go with friends to the park, walk to the store, be invited to the pool - they all take advance warning most of the time and planning on both our parts. Some of the spontaneity is gone and if there is one thing my girl loves is spontaneity. I feel bad about that on many occasions.
5. Most people assume: That diabetes can be 'controlled' and that all I do is program insulin into her pump and voila! we have 'control.' Oh, if only it were that easy, right?!
6. The hardest part about mornings is: Not asking her to test the first thing in the morning. I stopped about a year ago, knowing that it shouldn't be the first thought in the morning. Ever since, I ask her about school, the day ahead, and our conversation doesn't revolve around diabetes. 
7. My favorite medical TV show is: Oh gosh, I don't watch that much TV at all, I can't even name a medical TV show! But I tell ya, put on an episode of Hoarders and I am all over it like white on rice. Makes me feel my house is clean and that I am organized.
8. A gadget I couldn't live without is: Her OmniPod, cause it's her pump and her meter. If the thing cleaned up after itself, I might have to marry it.
9. The hardest parts about nights are: Gee, let me think, this one is easy. It's the worry. The worry that she will have an nighttime low that I will not catch. The worry that she will not wake up. The 2 AM check each night reminds me of the constancy of this disease. And often, when I lay my head back down, I cannot go back to sleep. My mind starts working and worrying and listing and thinking of things to do. 
10. Each day I take 1 pills and 0 vitamins: OK, is it weird that I don't take any medicines at all, I hate to even take Advil if I have a headache? I think the body heals itself, I really do. So, no meds for me. And Grace doesn't take any vitamins or pills. Insulin is her drug of choice.
11. Regarding alternative treatments: None for Grace so far, in terms of 'treatment' for the D, other than a constant flow of insulin. I am a believer that healing and treatments come in all forms. I like to think I am open to other ways of helping her should she need it, and the help ay not always come through a medical professional. I learned this through my oldest, who was GFCF (gluten and casein free) for 5 years when she was diagnosed with autism at age 2. The medical professionals looked down on it, but I knew it worked. My girl stopped screaming and flapping and stimming and didn't have red cheeks for the first time in her life. Alternative treatments like the GFCF diet I believe saved her from a progressive slide down into severe autism. So, yes, I am a believer in help in all forms.
12. If I had to choose between an invisible illness or visible I would choose: Well, we have both here in this family - autism and diabetes - so I don't have to choose, so there!
13. Regarding work and career: I left my wonderful teaching job, a position I held for 21 years, when Grace was diagnosed in January 2009. It was hard, emotionally, mentally and financially to leave it. I knew we didn't have anyone else to care for her. I did what I had to do and I don't regret it. I do go through times where I am extremely sad I am not using all my skills in this world, but they are shortlived and they pass. Grace needs me here and now and that is what is important. But I tell ya ladies, I was one hell of a good teacher. Some day, I will head back.
14. People would be surprised to know: That I consider our lives and our family very normal. And that, I admit it, I have a food scale, but I don't use it. Now I have 'outted' myself. Crap.
15. The hardest thing to accept about my new reality has been: That Grace may have a shortened life because of diabetes. That she may have complications, as hard as we work at keeping her numbers in range, they may still come. I look at her and want her to be 'a healthy grandmother' is what I always tell her, but the reality is, she may be an older person with complications that diabetes bring, no matter what we do. That is pretty hard to accept when I think about it.
16. Something I never thought I could so with my illness that I did was: Go to DisneyWorld with a newly (2 months in) diagnosed child with Type 1 diabetes and a child with autism. We did, we had a grand time, memories were made and it made us stronger as a family. My husband and I looked at each other on the plane ride home and said 'We can do anything now.' 
17. The commercials about my illness: Just once I want to see a BG meter on TV read '374' or '42.' The numbers on the meters - the elusive 104, always just make me a little ticked off.
18. Something I really miss doing since I was diagnosed: Being able to just pick up my purse and head out the door with the kids, without the 10 lb bag of supplies that need to accompany us. Sometimes I feel like a pack mule.
19. It was really hard to have to give up: Sleep. Definitely 8-10 hours of sleep tonight, compared to a 4 hour chunk, then a 2 hour chunk.  
20. A new hobby I have taken up since my diagnosis is: Blogging and the DOC baby!
21. If I could have one day of feeling normal again I would: Go to the beach, all day, with no supplies other than a chair and a boogie board and not worry about what time we will eat or what time we will come back. Grace says she would eat anything she wanted to, all day long and not once tell me about it.
22. My illness has taught me: That Grace is the most resilient kid I know. Besides all of your kids, they are also the most resilient kids I know too. It has taught me once again, that each day we have on this wonderful earth is a blessed one. That I should never take it all for granted. It has taught me how much we are loved.
23. Want to know a secret? One thing people say that gets under my skin is: When other people ask me if I have the diabetes 'under control.' It's like trying to control the ocean, or trying to herd cats. No, frankly, I attempt 'control' but often, the diabetes runs me over.
24. But I love when people: Connect with Grace about her diabetes. When she meets other Type 1s and they flash pumps or compare meters, or just talk the D talk. Grace feels a connection and so do I. I think 'These are my people!'
25. My favorite motto, scripture, quote that gets me through tough times
"Tell me, what is it you plan to do with your one wild and precious life?"
~Mary Oliver
One go round on this sweet planet. One chance to raise these kids. One chance to do this diabetes right. One chance to go here, do this, do that. Spend it in despair or glory, time is gonna pass anyway. Choose joy and happiness each time. Choose to do something glorious with your life. When times get tough, I think of the choices I have and it always comes back to the choice to be happy.
26. When someone is diagnosed I'd like to tell them: That it will be alright, you will find your 'new normal' and believe it or not, you will laugh again, have good times with your kids and you will find support for caring for a child with diabetes. I wish someone had said these things to me while I was in the hospital. 
27. Something that has surprised me about living with an illness is: How many doctor appointments we go to and how, when someone truly understands your path, how joyous that can be. Whether it's a doctor who shows compassion and not judgement, to a nurse who takes the time to talk to Grace about something other than diabetes, I am always heartened that people understand we are more than our illness. I am grateful each and every time we meet a kindred soul who understands our journey may be hard.
28. The nicest thing someone did for me when I wasn't feeling well was: Grace would say that it was her friends who came to the hospital and brought her presents of arts and crafts to do. And that they came, but were too young to come up to her floor, so instead, their parents brought them to the parking lot, and there they stood, waving to Grace while she looked at the window of her floor. They came to see her, and see her they did. It brought tears to my eyes it was so very kind.
29. I'm involved with Invisible Illness Week because: We are here to learn from each other - whether it be about diabetes or life. I want to learn more about how people cope, so I can help Grace cope. I want to let others know we are out here, doing our best and living our lives. 
30. The fact that you read this list makes me feel: Honored. Thank you for taking the time to learn something about Grace and I. 

Monday, September 12, 2011

Saying I'm Sorry

This is the story I began to write last night, at 2 am, sitting in my daughter's bedroom as she slept.
I completed it this morning.

I think I just want to cry. It would feel better, to cry about this, than to sit in my daughter's bedroom and check her blood sugar every fifteen flipping minutes and see numbers that all start with two.

Since 8 pm last night, here's the numbers roundup:
8 pm 244
9 pm 260
10 pm 252
10:30 pm 282 Pod change to arm
11 pm 272
11:30 pm 276
12 am 285
12:30 am 277 Pod change with NEW Apidra
1 am 291
1:30 am 265
1:45 am 272
2:30 am 242

I mean, you know what DMamas, I know meter accuracy, 282 is the same as 275!

Despite boluses ranging from .05 to .30 AND temp basal increases of +30% for hours.

And Grace doesn't hang in the 200s. When she is that high, I correct and she comes down.

OK, so I changed her Pod to her arm at 10 pm. No problem. From the same just-a-bit-left Apidra bottle. Mistake, I think that was. I should have cracked open a new spanking new bottle of Apidra and roundly said 'Cheers my friends!'

It is finally at 1:30 am that I realize this is what I should have done. Why did it take me over 5 hours and readings that did not change, despite bolus after bolus, to actually DO the one thing I knew would help her. Sleep deprivation? I don't know, but last night I felt so very lost. I was so very tired.

And Grace was awake until about 11 pm through it all. I sat at the edge of her bed, my iPad in hand, desperately trying to stay awake and asking Grace to try and sleep, that I would take care of it, her job was to rest.

And I said some angry things last night. I cursed the damn insulin. I cursed the Pod changes.
Not cursed like sailor-cursed, but cursed them through saying -
'This is ridiculous...What the hell is wrong with this?...I cannot believe this... I will never get to sleep... I am so very tired..."

And Grace heard me saying it.

And I profoundly regret it. It's even hard to write that I said those things in a semi-awake 9 year old's bedroom, one who didn't ask for diabetes.
One who just wanted their Mom there, to make it all better.

Right around 11:45 pm, Grace whispers to me at the edge of the bed. She is about to fall asleep.
"Thank you for helping me Mom."

And I start to cry. I tell her that "No, no, Mommy is always here to help you through, no matter what. I will stay awake for days if that is what it takes. I don't mind Grace, it's just that I am so very tired and when Mommy is tired she says things she feels inside, instead of just keeping it to herself. But Grace, you are so very welcome. Mommy is so very sorry I said those things. I love you honey."

And I went to bed, finally, at 3 am, with a 179 BG and a +20% temp basal set for the next 2.5 hours.

And I went to bed with a heavy heart.

Thursday, September 1, 2011

Diabetes Art Day - YOU are Our Sun

Thank you Lee Ann!

Diabetes affects people all over the world.
There isn't a continent that doesn't have a Type 1 person on it.
So, next time you feel alone, remember, you, by far, are not.

Diabetes can also bring gifts to this life. Unexpected gifts. 
Things you didn't see before, you see now.

Diabetes can color your world. 
It brings both sun and rain.
I know one thing that has brightened our world - the DOC.
You, all of you, change the way I think about each day.

DOC - this is for you. I hold you up, like all of you hold Grace and I up each and every day.
Have I said thank you lately?
Thank you.

As I made this, each time I inserted a used night-time test strip into the styrofoam ball, I started to say all of your names - all the people I know through the cyber-space DOC. I blessed each and every one of you - Kelly, Kerri, BSparl, Scott, George, Reyna, Joe, Hallie, SweetPea, Wendy, Sugar, Tracy, Steve, Lia, Conor, Delaney, Lily, Heather, Meri + 3 boys, Lorraine, Caleb, Lexi, Justice, Lee Ann, Karen, Wil, Hannah, Laura, Nate, Haley, Scott, Arden, Leighann, Q, Pam, Grace, Joanne, Elise, Jen, Addison, Nicole, Cara, Amy. Kim, Mike, Denise, Bean, Tracy, Matthew, Jules, Frank, Cherise....I could go on and on, and I did, through each push of the tiny test strip into the ball. 

And it hurt my fingers. And I kept going, cause my gal Grace keeps going every day. Grace created the 'flower' ball in the pictures above and as she did, she said her fingers hurt too. I reminded of what I tell her when things get rough 'Just do it.' And we did, together.