Wednesday, April 4, 2012

WEGO HAWMC Day #4 Write about health

I write about my health because... Reflect on why you write about your health


Well technically I don't write about "MY" health. But I do write about my son's health... At first my blog started as just a way to vent about the everyday issues we face with Type 1 diabetes. But as I've grown into the role of a caregiver and mother of a child with diabetes over the last 2 years, so has my blog. It's now become an outlet to give others (D and Non D families) a little bit of a look into what it's like to raise a child with a chronic illness, or what it's like to be a child with a chronic illness. I've shared our experiences in hopes of reaching out and helping someone out there that may be reading. I have a hope that some newly diagnosed families may come across my blog and take a look through everything only to gain a better understanding of things and realize that they are not alone. In the beginning your thrown into this whole new world, and it's confusing, scary, and honestly you don't see it as serious as it really is. In the beginning we really only learned all the "Technical" parts of diabetes management. We were told test the first two weeks at 12 & 3am, to tweak his Lantus (basal).... Then you can only test 2 nights a week.

I have to be honest after those two weeks I was exhausted, little did I realize that would become my new "norm". And I did cut back and test only two nights a week. ( thinking about it now scares the crap outta me). But as we've grown and experienced more of the "realistic" side of diabetes management so has our managing skills. He gets tested at least 3 times a night now. Once before I go to bed ( gives me peace of mind knowing what he is) again at 12 or 12:30 depending on his # when I go to bed and what time. Then once more at 3 or 3:30am. From time to time he'll get tested at 5am. I have to say I am learning to break out of my "norm". Last night was an example... Clifford was 111 at 11pm. 111 could go either way but I decided since I was getting up at 12 to test he'd be okay. Somehow I even woke up 15 mins before my alarm and he was 143.  This morning he woke up at 178... This leads me to question whether we need to change the basal at 3am. But that's a whole different story. I typically do not like a 111 at anytime before 3am. But I learned to go with it because there wasn't any nagging feeling of needing to treat it, I actually felt at peace with that number. Call it intuition, call it a 6th sense, or perhaps that's my "superpower" as discussed in yesterday's blog post. Whatever it is, it actually worked last night.

So the point to this all is, I write about his health for you all, and for myself. I write to help others in the same situation. I write to help those that may be a big ignorant as to what Type 1 diabetes is, and help to educate them properly. And I write for myself, writing helps me to release some tension, it helps me to think and analyze things when speaking about his numbers and basals etc. And you know what, I write for my son. When he gets older I'm hoping he'll stumble upon this and see how much I cared about him and his health, and more importantly that I love him.

Tuesday, April 3, 2012

WEGO HAWMC Day #3 Superpower Day


Superpower Day: If you had a superpower what would it be? How would you use it?


In reference to Type 1 diabetes my superpower would either be the ability to catch a low or high before they happen ( A human CGM if you will ), pretty much what a Diabetic Alert Dog can already do. Or the ability to regulate Clifford's pancreas as it worked before it decided to lose in the battle against his immune system. I'd imagine I would have a cape quite like this one:
Just imagine how much easier everything would be to detect highs and lows before they happen so we can fix them or to to regulate his pancreas with the blink of an eye (I'm imagining I dream of Genie).... But with every superhero there is always a weakness or Kryptonite. For the Superhero of Type 1 diabetes, our Kryptonite would be Ketones. You battle everyday against your nemesis to keep them away and from making your T1D sick. 

So there you have it the fight against the ketones will involve insulin and water!!!!!

Monday, April 2, 2012

WEGO: Health Activists Writer's Month Challenge Day 2







HAWMC DAY #2 Quotation Inspiration: Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes

My favorite quotation when dealing with most anything is by Robert Lewis Stevenson.

In dealing with Type 1 diabetes on a daily basis this quotation is perfect when you think about it. Almost every day we're faced with less than perfect numbers, so our "harvest" may not be quite what we want at the end of the day. But when you're raising a child with Type 1 diabetes sometimes less than a perfect "harvest" can just tug at your heart strings in concerns of complications, and other factors. But think of it this way, you are trying day in and day out doing everything right, so those "seeds" you are planting are much more important than the numbers on the screen. A few highs here or there are bound to happen, and it isn't your fault. You plant "seeds" daily as well in showing your child/children how to take proper responsibility and manage their diabetes the best they can on a daily basis. 

So don't worry about a less than perfect harvest. Think about the seeds you are planting now to ensure the best harvest of all in the future, (A long healthy life with diabetes).

Sunday, April 1, 2012

WEGO Health Activist Writer’s Month Challenge – Day 1

Today is the first day of WEGO’s HAWMC. Every day during the month of April a different prompt will be used by health activists and bloggers across the world to raise awareness for a wide variety of health issues, including diabetes, lupus, Celiac’s disease, fibromyalgia, childhood arthritis, and so much more! I will be (attempting) to participate daily as an activist for Type 1 diabetes.

Today’s prompt asks us to “Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?”

This is a really interesting question when you think about it. I have faith and hope that in 2112 those who open our time capsule will have no idea what these items are used for because diabetes would have been cured a long time ago. So in my vision of this they will be confused and interested in what they've come across. Included in our time capsule will be information about what Type 1 diabetes is, it's causes and how those with T1 must take insulin daily in order to stay alive. We'll have pictures of children and adults affected by diabetes to show examples of how diabetes doesn't discriminate. Included will be a blood glucose meter, lancing device, lancets, insulin syringes, the beloved glucagon kit, bottles of insulin, and testing strips. We will include in there the daily routine of something that is living with type 1 diabetes including from wake up throughout the night of sleep.


My hope is that those who open this time capsule will see how much care and work is put into living a life with type 1, but how those affected don't let it get them down and they keep on fighting back and speaking out.

Friday, March 30, 2012

Diabetes is.....

A pain in the ass... There I've said it. I try very hard to be optimistic, and opened minded about everything diabetes throws our way. But every once in a while we have nights like tonight that just leave me wanting to take a break from Diabetes and give Clifford some well deserved vacation time from D!

3 site changes, 1st didn't stick, 2nd he said was hurting him, checked and it looked as if it wasn't sticking right so I pulled it (at bedtime no less), bent cannula with blood in it. Stupid diabetes. Before pulling the site, he was high 289 (no ketones though so thought just a fluke) apparently insulin definitely went through with the bolus we gave because he was 65 30 mins later... Really 65! Ever have one of those moments you just want to go back to bed and start the day all over? Yeah that's diabetes

Diabetes is...
  • Confusion
  • Exhaustion
  • Overwhelming
  • Heartbreaking
  • Scary
  • Impossible
  • A moocher
  • Nagging
  • Never ending
  • Overbearing
  • Emotional
  • Gut wrenching
  • Guilt
  • Sadness
  • Shame

But diabetes is also
  • A smile
  • A hug
  • A kiss
  • Compliments
  • Friends
  • Family
  • Love
  • Understanding
  • Compassion
  • Joy
  • Strength
  • And so much more

Yeah once in awhile you have a bad day like our day today and get pissed off at diabetes. But there's always tomorrow, the sun will be shining, and you're given a chance to start all over. Diabetes never place fair, it never sleeps ( I really wish I had it's energy), and it's just a thorn in your side that won't go away. But like a thorn that causing pain and hurt you tend to get used to it being there. It' will never get any easier, but it will get better.

It's all about the basals....

The last few days have been nothing short of "interesting".... Tuesday evening Clifford has low after low, after low, starting at dinner with a 58 that he didn't feel. We couldn't get him up for anything, ended up having to suspend his pump until he finally got up to 98. At bedtime he was now a nice 105... But to me I expected some rebound highs from the lows that couldn't be brought up. And he got them 316 at 12, then 215 at 3am. At 5:15 I decided to test to see what was going on and he was 432?? Checked ketones 0.4 (okay well now that is not good since there are ketones)... Rechecked at 6:15 he was 319 still 0.4 ketones. Then he woke up at 6:30 saying he didn't feel good at all. We checked 419 0.8 ketones... (now that tells me something isn't right, tried to call his endo, but they told me that no one came in till 7am??? Whatever, after getting off that phone call not even 5-7 mins later he was 535 and 1.2 ketones.

Clifford at this time said you could tell I was serious because I took my robe off, went running for a syringe (on the shelf, don't keep them out anymore b/c of pumping), came in did some quick math, calculated 3.6 for correction via syringe, corrected, and pulled the site. Wish I would have taken a picture of it now. At first glance didn't seem too bad, but a closer look showed it was slighty askew and there was blood in the cannula. (sneaky little sucker, somewhere between 3 and 5 it did this) All was well with a correction shot, and a new site change. Called his doctors and told them I was keeping him home for monitoring. Took until about 3pm for him to get down under 200s but he did, and eventually was 111 for dinner time.

That was our first experience how everything can go downhill fast if the pump is not working properly. As for the title of this post, we're trying to figure out his basals, should it be 0.3 at night or 0.35, or 0.2 during the day or 0.3.. Honestly it's giving me a bit of a headache, but I know once they are figured out it will be smooth sailing... until he grows at least.

Tuesday, March 27, 2012

Pumping Update-How's it going?

We've technically have been pumping for 11 days now, including our 5 days of saline. We are one week shy of actually pumping "live" on insulin. So you might ask and wonder "how's it going"... For the most part everything is going great. The first three days it was like his pancreas woke up and decided that it no longer wanted to be lazy, but the actuality of it was we had a new "robotic" pancreas to help us with this. His numbers were nothing short of beautiful, with exception to 3 lows in the 50s each day. Then the weekend came along, and he headed to his dad's and his basal rate for 7am to 6pm was changed from 0.3 to 0.2...

That and coupled with the fact that the beautiful weather we were experiencing decided to die out on us as well, he started having a few "highs", boy how I hated to see those highs mixed in with the "beautiful numbers". Sunday rolled around, he was high 306 2.5 hours after eating dinner at his dad's and getting a site change earlier in the day. I checked the tubing, checked the site, all looked well, so he had a snack, I corrected and sent him outside to "work off" the high as I call it. An hour later after some hard playing he was 72... Quite a drop for him, but at least we ruled out a site problem. I was beginning to contemplate a site change before bedtime if he was still high. Up until bedtime I couldn't seem to get him higher than 86 (all that great exercise you know) this lead me to believe we would be seeing some delayed lows during the night. When I checked him at 10:30 however he shot right back up to 316. Honestly that absolutely made no sense to me, so I washed his fingers and retested. Still high 309..... SO I made the decision to correct. I can see letting a lower 200s, or mid 200s ride until the midnight check, but I didn't like seeing him over 300, not with his new "robot pancreas". But with it being the first correction at night (YIKES), and knowing his past experience with a lot of humalog at night dropping him. I backed off the 1.7 units the pump recommended and went with 1 unit.. I made sure to retest within and hour and a half to see just how much he was coming down. He was showing 285, then at 3am he was 256.. At wake up he was 230, still high but much better than the 300s. School went good for the most part except when snack time came along and he was 295! Tested him after school, for ketones too, just to be sure. No ketones (okay sites good I thought), this time no correction (too close to dinner) just sent him outside to run off the high again. It worked he came down to 77. Now dinner time rolled around, and I honestly was too tired to prepare anything wonderful so we had PIZZA! Pizza always makes me nervous because of the fat and it's ability to make him higher for a long time. Thankfully at bedtime he was 86(again), do you see where I'm going with this now?

At 10:30 he was 275, 12:30 he was over 300 (again) so corrected him again, this time I got a little more comfortable and gave him 1.2 units (pump suggested 1.6). 3am he was still in the 200s (can't remember the number right now) but at wakeup today he was 183 (much better, still above target but under 200).. A call into his CDE and she adjusted his basals for midnight increased from 0.3 to 0.35, and at 6pm increased 0.3 to 0.35. Here's hoping this helps. I however have a feeling that once the weekend rolls around and he is home and the weather is nicer that he will get back into range and possibly lower. Got to love diabetes. Definitely no consistency ever!