You know, for the most part (for me) when Sierra was diagnosed obviously the first few days were a huge, huge emotional turmoil kind of thing. Obviously right? And in the weeks (and month-months) following as you adjust to the new lifestyle and what is needed to try and help your child manage this disease there are sparks of that grief that sneak in here and there but you take it, swallow it down after a bit then move along your 'merry' way and continue to try to accept what is and what will be.
Last night I didn't have a very accepting moment, I don't have them often - but I couldn't really stop the upset after a particularly ridiculous day of numbers. She started in the 200s, went to the high 400s, dropped to the 40s (TWICE), hovered between 100-250, then back down to 50. It was a confusing, heartbreaking, frustrating day for me. And I know it probably wasn't easy on my little girl, either, even though she was at school and seemed to maintain perfectly find spirits and energy despite the tennis match going on in her body.
I need to figure out what went wrong. What we're miscalculating or what to change on school days or how to do it. How to KNOW what the hell is going on without really knowing. Adjusting. Changing things around again until we get it right while only having a few ideas of where to start because the process is still a process. What I mean by that is that I can't just have people test more frequently and fix or change things all at once. Sure, you can test every 30 minutes but that doesn't mean your numbers are reliable - sometimes you still have active insulin that could drastically change your number over the next 30-60 minutes still, and sometimes you forget that or you're so freaked about a ridiculously high spike that you want to correct ASAP because DKA is horrible and you don't want that. Then you get a low and you are punched in the gut with the remembered knowledge of why you don't do that.
And on and on and on it goes.
Frank came home from the pump class with a great amount of information. The leading thought now is no longer the omnipod (though it's possibly still being considered, we need to discuss more over the weekend) - but the medtronic mini-med. I still have a really hard time coming to terms with the idea of a tubed system (I'm irrationally paranoid about the whole infusion site/set and tube kinking stories... I'm afraid I'll mess up whereas I feel like the omnipod is a little more foolproof - at least a little more anyway). If I'm being honest I'm having a suddenly really hard time accepting the fact that my daughter will need to wear things on her body for who knows how long. Tubes. Needles stuck in her for days. I saw her little finger tips yesterday in the right light and already see the soft flesh turning into slighty firmer, slightly yellow tips with tiny little dots all over them.
It breaks my heart. I know these things are keeping her alive, keeping her healthy and able bodied but it's still so, so heartbreaking sometimes. The pump and technology that comes with it should be EMPOWERING for me right now, but it's not. I need to let go of this, of these minor technicalities - anything is worth keeping her healthy and with us, what difference does it really make if that means she has pockets sewn into the back of all of her tshirts and a tube poking out of her bottom? I mean really, in the big picture - does it have to be this huge life altering thing?
I guess not. But I need to grieve some more apparently. And last night and this morning were one of those times. I'm struggling, but as always I'll pull it together and keep moving forward. I just needed a little outlet. I'm not some stone being who isn't emotionally effected by the suckiness of this damn disease. I hate it with a passion, I hate it for me - I hate it for her, but I need to find a place where I move myself back away from remembering that hate and working on figuring things out again. Making her numbers at least reasonable. Dealing with what needs to be done and doing it and not looking back.
I guess cereal is added to our current list of "don't know how the heck to combat" foods. Pizza. Cereal. Mac n' Cheese. Probably rice, but who knows. Grapes sometimes - too. It's not the end of the world but every single thing I take away gives me a little shot of grief and a reminder. I'm sure as we continue to get deeper into this it'll be easier. More systematic. I'll get stronger, less emotional.
Actually if I'm being fair I haven't had a little meltdown like this for at least a couple of months. I'll get past this one too... I just think sometimes it needs to happen. Part of the process.
I'll be fine. She'll be fine. I may never like it, but I'll live with it and I'll keep trying to redefine what my 'best' is. My knowledge here is power and my ability to make things happen, but I won't ever be perfect. There's no such thing. I know we'll probably have days like this again, I just hope not soon. Those lows are scary, those highs are frustrating.
Back to the drawing board again. It's hard to believe we've only been doing this since late October. Apologies for the woe-is-me post. But I created this blog for the good the bad and the ugly. Sometimes the ugly will be here, and if I'm going to be honest with myself I may as well be so here. Take the grief, own it for a little bit, then let it go and move on, because there are so many good things going on out there for diabetics.
Trying to remember that.
In October of 2011, our 3 year old daughter Sierra was diagnosed with Type 1 Diabetes and spent three nights at the local PICU. These are our stories, experiences, and our life as a family of four moving forward.
Ugh, that rollercoaster of emotions is completely overwhelming at times. We are 8 months into this and I still grieve a lot…sometimes at the most unexpected times and at little things- like when my friend’s 3 year old wanted a snack and she just dumped some goldfish crackers on the table for her, without having to count them. I think, in the earlier stages of diagnosis, you run into so many “firsts” that they all sting experiencing them. After that first time of having to say “no thank you” to the bank teller handing your child a sucker, each time after that seems to be easier. I’m sure it will be years before we’ve been through most of it, but every day does seem to be a little better here.
ReplyDeleteI am curious about your leaning to the Medtronic… Our endo STRONGLY pushed the Animas Ping, but we were set on the Omnipod and had to do a lot of convincing to get it. However, we love it and are super happy we stuck it out and got it! We didn’t consider the Medtronic due to it not having a remote. Being able to bolus your child from across the table, and them not even knowing it, is an amazing, wonderful thing. :)
Yes, the roller coaster ride of diabetes. It's a constant up and down it seems. Funny, I was just thinking the same thing this week as we have had a bumpy week. You are still so early in adjusting to this new life and your emotions are so valid! I still grieve A LOT and it has been 20 months for us. I feel the same way about the pump. I know seeing my daughter with something attached to her will be another step in the whole grief process and I'm not sure I'm ready for that yet.
ReplyDeleteWe learned early after her diagnosis that a cereal was a trouble food for her as well. She was spiking to over 500 from it! We were also still making big adjustments to lantus and carb ratios though too, so that was a big part of it. So we have compromised and sometimes she has it for lunch now and does so much better. Do you use a scale? We have great luck with all fruits especially when I weigh them at home.
We also have an issue with cereal and certain other breakfast foods, so last fall we started playing around with a Super Bolus at breakfast where we give additional insulin with her breakfast dose and lower her basal for a couple of hours after breakfast. This allows Emerson to be able to eat cereal on occasion without shooting up to 400. I wrote a short post on the Super Bolus last fall, or you can google it and find out more information. It might be worth a try once you start pumping.
ReplyDeleteGood luck with deciding on a pump. As I have mentioned, we love the Omnipod, but I doubt you can go wrong with any of the pumps.
I hear ya! The roller coaster thing is tough. And makes no sense...and drives you crazy!
ReplyDeleteAs far as the pumps go, I think they are all great. The biggest thing I learned (since we've tried two of them) is which one fits your particular lifestyle. And really...how can you know which one will work for you until you've tried it? That's the hard part. When I looked at all of the pumps, I didn't like the Medtronic because of the lack of remote. I couldn't imagine having to stop him, pull out his pump and bolus each and every time he wanted to eat. Especially if I had a girl with dresses/skirts, etc! We all appreciated when he was having a snack, he could continue to play with his friend and not have me interrupt. That said, I know many Medtronic users who say it is a total non-issue! The other thing that I'm guessing is a sales point for the Medtronic is the integrated CGM. We haven't personally tried it, but I've heard and read online that the sensor is much more painful to insert than the Dexcom. And I think (I could totally be wrong) you have to change it every 3 days vs. 7 days with the Dex. While we are semi-happy with Omnipod (there are things I just don't like about it, but Adam loves it, so he's the deciding factor!) there are times I wish I could switch him back to our Animas Ping. He didn't get post-site-change highs with it and what I like about a tubed pump is that if you forget the remote or PDM, you can bolus from the unit itself. Which certainly happened to us a few times!
Bottom line is...whichever you choose will be great for her! Because we all have different needs and so do our kids. :)