From the mail
I get a fair amount of email and sometimes I share it, this one not only touches me, it gives me the opportunity to remind you that Arden’s JDRF bowling fundraiser is today. Two birds with one heartstring... I won’t identify the reader that sent this in but they know who they are... These fine folks drove a long way last year to attend our bowling fundraiser, a fact that almost brought me to tears when I saw them walk into the bowling alley. Anyway, they can’t make it this year but they sent this email in their place. It spotlights quite a lot about what it means to have, live or love in a type I world and it also is the kind of note that helps me find the energy to keep up the site when I find myself too tired or busy to write...
“Hi Scott,
Thank you so much for the invite. I can’t believe how close the date is to when we would have been able to make it. We will be visiting in New Jersey during the week of January 15th through January 20th. We will celebrate J’s 7th birthday while we are there (her birthday is January 24th). Wish we were there on the 29th because we definitely would have attended the Bowling Fundraiser with you and your family again. However, so glad we did get to meet you and your family last year.
My daughter and I still follow Arden’s web-site religiously. We can relate to everything you write. And, we realize, like you, that unless you are a type 1 diabetic or caring for a type 1 diabetic, you would not have a clue as to how much work and worry is involved with caring for a type 1 diabetic. And, if it were just the work, we would not complain - it's the worry that is at times unbearable. Luckily, I live right across the street from my granddaughter and see her every single day; however, every night when I go to bed I can’t wait until I speak with my daughter the next morning to find out that J is o.k. Even though I know my daughter is setting her alarm every night to test her, I still worry. Unless someone is dealing with this directly, they do not understand.
In addition to following your web-site because of your exceptional explanations of the everyday dealing with type 1 diabetes, I also like to follow Arden's progress since she reminds me so much of my granddaughter. From what you write about Arden, I can tell she is also such a happy and brave little girl, like my J. They never complain and deal with something that no child should have to deal with. I pray every day that in their lifetime there will be a cure. And, I also pray that I will be here to see that day. I pray for nothing else more than for that.
Again, thank you and God Bless you for all you do.”
A long time ago when I started this website I remember being asked, “why are you doing it?” and responding, “maybe it will help somebody”. Seems as though it does. I’m touched and humbled that even one person stops by to read what I write. Thanks to everyone that reads and if you are in the central Jersey area please consider bowling with us today. Arden’s bowling event has raised nearly $6,000 in three years and it’s ALL due to the hard work of Dan Stewart. I don’t do anything... Thank you Dan!
The event begins at 3pm. If you can’t be there please check twitter for pictures (if I can get Arden to look at the camera).
C’mon out! (click the link)
http://web.me.com/skca/Ardens_Day/Daddys_Blog/Entries/2011/1/5_Time_to_Strikeout_Diabetes.html
Spontaneous reboot
Arden’s PDM has been spontaneously rebooting for the last few days. Sometimes it happens when I press the home button and sometimes it happens when no one is touching it. The long and the short of it is... it’s broke.
I just called Insulet (makers of the OmniPod), I held for a few minutes and then explained my situation much in the way I did in the previous paragraph. (I think that it’s important to note that the CSR doesn’t know that this is my website and that I’m not compensated by Insulet or anyone else for sharing my thoughts about the OmniPod or any other D related stuff that you see on this site). She put me on hold for 30 seconds and when she got back she told me that a new PDM would be overnighted to me immediately.
I want to note that I’ve never had a tense exchange with an Omni rep, never. I have had moments when I was upset that I guess could have escalated when I didn’t like what I was hearing but that’s just never happened. I’ve heard from time to time on the interwebs about folks having issues with Omni reps but I’ve never had anything but good experiences.
* I’m having issues with comments on the site that I’m working to fix. Some people may not experience them.
My Freestyle test strip test
Standard blog disclaimer... I’m not a doctor and listening to me when you make decisions about your or anyone else's diabetes is just plain not a good idea. That said, these new test strips work fine in your OmniPod PDM (at least the PDM we have - color PDM).
Like all of you, I was caught off guard when I opened a new box of test strips to find that they weren’t what I was expecting. I immediately made some calls and found out that I would have to track down the old strips if I wanted them. Then I asked myself the following...
“Self”, I said. “Would Freestyle make test strips that wouldn’t work in my OmniPod PDM?” and myself answered, “not likely since they have a business relationship with Insulet”.
Then I asked myself, “what is the FDA doing with the strips to test them” and I answered myself by saying, “probably comparing them to the old strips and making sure that they work”.
Then I took a few minutes to congratulate myself for being so smart and myself agreed. I proceeded to do my own FDA style home testing over a two day period. Here are my results:
11/22 - 9:48pm
Old-211
New-200
11/23 - 7:30am
Old-117
New-112
11/23 - 8:15am
Old-150
New-155
CGM-158
11/23 - 7:35pm
Old-85
New-72
CGM-65
11/24 - 8:00am
Old-170
New-176
CGM-169
11/24 - 1:50pm
Old-217
New-218
CGM-191
These numbers coupled with my astute deductions were more then enough for me to trust the new strips. I saved one vial of the old style ‘just in case’ and moved on to the new style around the 1st of December, 2010 and have not looked back. Be sure to set the coding on your PDM to match the vial!
If you think back to when your child was diagnosed, the nurse at the hospital used a huge meter (about the size of a brick) to test your child’s BGs. I’ll never forget the moment when the nurse took our first free meter from it’s box and had me test Arden. The nurse tested Arden with the ten-thousand dollar meter that the hospital uses and then I tested with the twenty dollar meter they gave us. The numbers were sixty points different, SIXTY! I said, “which one is correct?” and the nurse told me that her’s was probably more accurate but not to worry because I couldn’t afford the one she had and it wasn’t portable anyway but “don’t worry because this is the meter that you’ll be using every day” - as if that made up for it not being accurate!
My point is this, we don’t really know what our kid’s BG is. If ten meters tested Arden from the same drop of blood, we’d probably get 7 different readings and who is to say that the three that agreed would even be correct. This entire thing is a crap shoot.
Arden was 69 the other day, it was hours after her last bolus and her DexCom line had been steady around 100 forever, (though it was drifting lower) but she felt fine. Was she 69, 49, 89? How the hell can I know? She felt fine, she was steady, I dosed her last meal accurately, what am I going to do?
Final verdict: I say use the new strips. They require way less blood and in a day or so when nothing goes wrong, you’ll trust them just as you did the old style. In the end, this is all about trust. You’ll be a veteran of this by the time the FDA gets off their asses and gives the thumbs up.
**
The following are archived comments from this post. You can post new comments below.
Thanks for your thoughts about them and the test - appreciate it!
I think the important thing is using the same meter and the same strips consistently.
We have also been using the new strips with no problems that we have noticed.
When I spoke with Abbott when we got our first nine boxes of the new ones the rep happily sent me a FreeStyle meter to use until FDA approval (which I didn't want to use because isn't the whole point of the integrated meter that it's one less step). I had done a bit of an experiment using the old and new strips in the PDM and the new strips seemed to give a little lower number. The rep said that the new strips are more accurate and that could be why. Who knows.
The point being, we have been using the new strips for months. Months! We've gone through 900 of them and are on our next round of 900 (we fill 90 days at a time).
And I firmly believe that the only reason Q began testing her own blood sugar is because the new ones use so little blood and the little nub is an easy target to hit.
Thank you for stepping up and coming out and saying you use the new strips in the PDM. I appreciate it! (Because lots of people are FREAKing out about it.)
Leslie
The test strips were finally cleared by the FDA on January 6, 2012. I wrote about their clearance and the FDA's incompetence here.
The fall
Last night around 7 pm Arden experienced a spike from dinner that required a bolus. Even though I asked myself if cutting the amount of insulin by a third might not be a good idea (since we were so close to bed time)... we were covering a big number and all the math added up so I gave the bolus. Two hours later Arden was getting into bed and we were chatting about the weekend.
I checked her CGM and she was 90 with a diagonal arrow down. I tested, shut off her basal insulin and got her a glucose tablet. Her BG got as low as 75 at one point but I was able to control things with some more basal magic and I’m happy to report that she awoke for school today at 133 and had a nice steady line all night.
But that’s not what got me blogging today...
What got my to the blog machine today is this. Arden had just finished the glucose tablet and I was touching her hair, trying to help her to sleep. In a quiet moment she said in a whisper, “I can feel the fall”. When I asked her what she meant (though I knew and just wanted to hear it in her words) she said, “I can feel the insulin making me fall...” I asked, “where on your body do you feel it?”. “In my head, I can feel the insulin in my head make me fall”.
I don’t have any words of wisdom and at the moment I can’t see any lessons to take from this. I just wanted to share that Arden can, “feel the fall” and that it makes me sad. Even though I knew this already and I use those words when talking to the school nurse at least weekly and even though it helps her to avoid lows... to hear Arden say it made me sad. I’m not bummed out, just sharing. I hope everyone has a great day!
One good thing about all of this is that there isn’t much time to look back... you just have to keep moving forward. huh, look at that, there was a lesson in this. I’ll be damn.
**
The following are archived comments from this post. You can post new comments below.
In our "6 Things" video Q talks about how she feels when she is low, like she could flop down.
Sometimes she tells me she feels low and when I check her she isn't. Surely it's the insulin kicking in and she's on her way down. Sometimes she's said she's low and he number is fine and we recheck her in a while and she has dropped dramatically. Maybe she can feel it way before it's reflected in her numbers. (And this is where I can see that having a CGM would be helpful.)
I guess the good thing to take away from it (if there is ever a "good thing") is that Arden has hypo awareness, some kids don't.
Thank you for sharing.
Arden totally feels the drop.
You're very welcome, transparency is the key to advocacy. Thank you for yours as well!
Trusted too much
I fell into the trap... I ignored what I was told, only for a few hours but that was enough.
My brother is home for the holidays and last night we went out to dinner to celebrate his last night with us. Arden ate, I bolused and felt great about it because there was no spike visible on her CGM. We went about our evening talking and just enjoyed the time together - it was a great evening!
Now it’s important to say that the food she ate would normally have caused a spike and that more often then not it would have required a maintenance bolus about 90 minutes after she finished eating. About ninety minutes after dinner I asked Arden what her Dex said and she was slightly elevated with a horizontal arrow and she hadn’t heard a beep in hours. I remember thinking that I must be getting better at estimating restaurant carbs and then she left to play with her brother.
Before bed I looked at her Dex and she was 150ish, which I was okay with because she has been dropping around midnight these last few nights. Then I tested her and the number hit me like a cold glass of water to the face - 413.
I re-test and it came up again 400+. Now I can feel my stress level growing and I’m normally pretty hard to rattle. How long has she been this high I wonder. I mumble, “been high for five hours I bet”. Kelly asks me what I’m muttering and I respond in an unpleasant tone. I’m angry now. Angry at diabetes, at DexCom, at myself for thinking that I could enjoy a few hours with my brother. I’m just pissed off. During this mess Arden says, “I think I bumped my Dex a little while ago”. “Poor kid, can’t graze the doorjamb in the car”, I think to myself - and that makes me even angrier.
I take a deep breath, change her Dex transmitter, apologize to my wife for snapping at her and bolus for the high BG.
It’s only a few hours and this certainly isn’t a cause for alarm, Arden is fine. No ketones, no sick stomach she never really knew - but I know. I can’t really ever shake the notion that I just cost her time from the end of her life. I know that I can’t or rather shouldn’t think about all of this in that light but I just can’t help it. I don’t have the same life that other people have, my daughter doesn’t, my son doesn’t, my wife doesn’t, we just don’t.
The real bitch about type I is that when other people make a mistake raising their kids they don’t really know that they’ve messed up. Saying the wrong thing to your ten year old that causes him to seek a therapist when he’s thirty is probably par for the parenting course but there isn’t meter with a test strip that tells you every few hours that you’ve fucked up. When your son tells you that he’s not as happy as he could be twenty years from now you can bury your head in the sand and blame his girlfriend (that you knew was no good for him) and pretend that you were a perfect parent. We can’t do that. If Arden ever experiences a decrease in her vision, a failed kidney or any of the other side effects that come from having the inside of your veins, arteries and organs sandblasted, well, I’ll know that it was me. I forgot, was too tired, mis-calculated, whatever the slip up, I did it. I know that I’m only human and that I’ll make mistakes but boy does diabetes give you a lot of opportunities to make those mistakes. Then just when I’m about to really feel bad for myself I remember that I’m actually good at this and then I feel ten times worse for the people who really struggle.
So in the spirit of the pursuit of transparency about type I diabetes, I give you this post. Our technology failed, I failed, Arden paid, my relationship with my wife took some shrapnel... in short, my family lives with diabetes.
**
The following are archived comments from this post. You can post new comments below.
Ali