Today was suppose to be a good day...isn't everyday?
But today ended up being the day my plans and a little piece of my heart was crushed by diabetes and my government.
First, My Plan: I was planning to have Cara and us pumping over the summer. What better time to do this right? I have Cara home with me all day and night and I'm able to learn and tweak to my little heart content. We have gone through pre-pump, we met and picked out our pump (Medtronic Veo) and today was the day we were doing to order it.
We met with Cara's endo last month and he told us he wanted to get Cara more "stable" before we started pumping. Today was the day I was going to tell him "listen, we are as stable as we are going to get on injections it is time to pump"
Injections have not been working for us for a while now, Cara's A1C has been in the 10's for months and we have been working like crazy to get it down. The problem is that a .5 increase of insulin is just too much for her, we are fighting dangerous lows all day long, then we back off and we are sky high all day and night. We just can't get the right combo for Cara on shots and it is driving me nuts.
Next issue for the day, the dreaded A1C... how important really are A1C's?
ya I hear it all the time "don't worry your child's A1C is only a number" "it's not a report card"
But guess what, it is now in Ontario!!
Today my government told me that I SUCK!!
Today my government told me that I'm not doing a good job and because of that they are punishing my daughter.
NO PUMP FOR US!!
You know why?
It seems that starting this JUNE all people who would like to apply for a pump which is covered by the Ontario government needs a A1C under 10 to be accepted.
So now in Ontario it seems this little number does mean a lot more!!
So what does an A1C mean to me?
For me it means that I can't get the technology that I need to properly manage my daughters diabetes.
For me it means that I have not done what I'm suppose to do in the eyes of some government official.
For me it means that my plans are a bust...all thanks to a lousy A1C that yes was over 10.
I'm not happy at all...can you tell?
So now we are stuck on shots, stuck on a treatment that is not working for us....obviously. We can't get out of the 10's without causing insane lows BUT here we go again we are going to give it a try...AGAIN!
Tomorrow Cara is getting hooked up to a CGM so we can tweak a little here and there and keep her safe.
Diabetes and this new A1C rule can SUCK IT...BIG TIME!!
15 comments:
I am so sorr Nicole! Thats utter bullshit!
Medicaid wouldnt even look at our rx for pump..we ended up having to finance it. Is that maybe a way to go?
Good luck mama!! And you do not suck. They do!
Nicole,
I was wondering if you had seen a findings about insulin degludec and was wondering if you had read anything your self?
http://www.dailyrx.com/news-article/longer-lasting-insulin-12258.html
The day will get Better!
Oh Nicole...nooooo! I am stunned, pissed and outraged for you. Seriously?
You do NOT suck. You are doing the very best you can - diabetes does NOT play fair...and it seems, neither does the Canadian government. I am so sorry, hon. (((Hugs)))
what a disappointment. I can't imagine the thinking behind their limiting based on A1C's...what a pile of crud. I'm soooo sorry. Let us know if there is any way we can help - letter writing, stories of how the pump has helped small children...anything, we're here.
Take care :)
Nicole I was thinking about this and thought maybe another set of eyes on your guys regime and numbers might help - this guy on CWD has helped me tremendously with tweaking things for Isaac, he's Canadian and has a daughter with d whose in on MDI his name is "Wilf" another great resource on CWD for me has been "Lantusfiend". I am sure either would be very happy to assist you. I wish there was something I could do, I can not even imagine how frustrated you must feel right now. Let me know if there is any way I can help :)
ERGH! That is CRAP! I am with sarah..if we need to write letters to your government..WE WILL!
Wha, wha, what?! I had to read this post twice, then one more time to my husband to try and wrap my head around WHY an A1C lower than 10 is required to qualify for a pump. I am baffled. I fail to see the reasoning behind making a threshold for an instrument designed to help lower A1Cs. I am so sorry, Nicole. Like Sarah said, if you need some back-up letter writers let us know.
I am so so sorry to hear this. The pump is such a better way of management (at least for us) and it makes me sad that Cara will not get to use the pump (yet).
We too live in Ontario so we have also dealt with this issue. Fortunately we have never been declined funding.
I actually went on the pump before funding was available from the government at all (I assume you mean through the ADP program)and what we did was have as much of the pump covered by our regular medical insurance as possible. We still had to pay a portion that came out to over 1000$, but it made it feasible, with some stretching.
I hope the CGM helps- it is a very useful tool in fining highs that aren't picked up through regular testing, which is what we find can shoot our A1Cs up.
Good luck!
-Kylie
Oh, that totally sucks!!! I was reading your post on my phone sitting in my sister's kitchen and was yelling at my phone like an outraged idiot!! I, of course had to explain myself and everyone thought it was total crap, too!!
To say that you need a lower A1C to get a pump so you can better control Cara's diabetes, thus obtaining better A1Cs, is INSANE!!
It makes absolutely no sense whatsoever!
My nephew thinks you need to move!! ;)
This broke my heart.
I'm so sorry, Nicole. It seems so unfair :(
I know you're trying everything -- we really struggled with shots...and she ended up getting low all the time because I couldn't get a dose small enough to treat her effectively.
Maybe diluted insulin? That's something I learned about from the DOC. It wasn't ever presented to us as an option.
Please let us know what we can do to help.
UGH...so sorry to hear this Nicole. I cannot even begin to imagine how frustrating it must be to have someone or something else dictate what you can or cannot try in your child's diabetes management. Tweak away, recover from this blow, and then fight the good fight friend...as you always do.
I am so sorry to hear that! We recently moved from Ontario to Manitoba. I want my son to start pumping - but pumps aren't covered here at all. Good Luck! You are a wonderful mother, doing the best you can for your daughter.
I am just heart broken for you! If only we could help them understand that the pump is likely the answer for helping balance things out!! FIGHT FIGHT FIGHT!! There HAS to be a way to get the pump you have been waiting for!!
Oh my gosh. Government intervention at its worst. I hope there's some kind of process you can go through to challenge that. I know how much it can help to be able to dose smaller!
I feel crushed for you. This is such a crappy catch-22. Can you make an appeal? Can your doctor write a letter to get an exception?
Not that you need one more thing on your plate, and not that you need to advocate any more than you already do (because I know you do A LOT!!), but what about approaching the gov't and explaining how the "under 10" rule doesn't work for all who live in Ontario. Maybe it's okay for adults, who can tolerate larger doses of insulin, but not for kids, whose little bodies are sensitive.
My first thought, which I mentioned to you on FB, was diluted insulin. If an appeal doesn't work, then perhaps strive to get her on diluted insulin.
Good luck, my friend! I'm sending best wishes your way!
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