The checks went fine, but once a year they need to take bloods (to check for kidney damage and for potential gluten intolerance - We all fear that one I can tell you). Taking blood made her feel a bit faint though and we ended up staying for quite a while until she felt better. We were late being seen anyway, so with this as well I was glad I put plenty on the car for parking, we left home at a round 11.30 and didn't get back until 5.15!
What was nice was that although the last couple of weeks have been terrible as far as levels are concerned - too many carbs are around in unpredictable amounts and chocolate seems to make blood glucose levels do crazy things. But they told us that if this was what we thought were bad levels then we were doing really well. I explained what I'd done about changing breakfast to get rid of the morning spike and how we'd increased the slow acting insulin to try to keep the average somewhere in the middle. The new consultant was fine about everything, telling us to look at a few other things, but as always to do changes to ratios slowly and to look at the graphs.
There are more things I want to do to help. I often cook low carb dinners now, but I'd like to get going with sourdough again as I've read it supposed to be better for diabetics. Lots of little changes add up and as I've said before they do us all some good really.
And of course I'd like her to get on a pump and a closed loop system, but she still seems a little unwilling at the moment.
One thing that is mad is the disability benefit/allowance she/we are now entitled to, this is to help cover things like all the hypo treatments, time off work to take her to things like appointments, extra bits that aren't covered by the NHS (silly things like stickers for CGM) etc, we still haven't seen a penny. Now for us it's fine, we're financially stable and always run with a little behind us, but for some families it must make it so tough. Let alone you have to reapply for it every three years - for a permanent disability - and the paper work takes hours to complete, but then you have to wait well over half a year before you'll see a single penny, after waiting the first three months to be able to apply in the first place. Fine that they back date it to the date that you apply, but only fine if you can survive until that point. We're lucky we can, but the government doesn't make it easy for people.
Anyway, another one ticked off. Soon it'll be a year gone and that seems crazy, I think we need to go out for it, not to celebrate it, but to show we won't be beat by it.
Daughter has to reapply for George who has DS, every 3 years, nothing much changes as he grows, he is 4 now, except he is faster at escaping. Well done for getting on top of things, and turning them into your normal life and routine, I know for you and many others it's what parents do, but not every child gets this much support.
ReplyDeleteWhat a brilliant idea to make a daddy-daughter date of it. She has certainly dealt well with this massive change in her life and I'm so glad she has the support system to help her through. You are such a hands-on dad and should indeed be proud.
ReplyDeleteGood to read that your idea of bad fluctuations is well within an acceptable range. Celebrate that you are all clearly doing better than you realized. I feel sorry for kids diagnosed with diabetes in families that don't have the versatility of yours.
ReplyDeleteMy littlest one has now started ordering off the adult menu. I know how you are feeling! Where does time go?
ReplyDeleteDealing with governments isn't for the faint of heart or those in a hurry. I'm currently sitting here listening to hold music on my cell phone, now 80 minutes into my wait, just to figure out why the government student college financial aid site won't let me go pass step 3 of 7. Sometimes, things like this make me appreciate the time I can close the doors and just tinker around in the woodshop awhile with nothing pressing on my mind.
Kev, when I was growing up and a very young, we had to make an annual medical checkup visit. Like you, my parents made a day of it so it was never something I did not look forward to (and burgers are a great thing to look forward to). Many congratulations on all of the great work you have been doing to manage this.
ReplyDeleteTo Ed's point above, it is no better for governments here in the U.S. Currently I am working through the unemployment system - in what turned out to be a fortunate turn of events this is my second time, so I have learned at least in principle precisely how to answer things and submit paperwork in a way that moves things through the system. That said, it is a time sink.
Your daughter is a beautiful young girl and you must be very proud of her. She is doing great as are you while helping to manage her health. Your father/daughter date made the day that much better and that burger looks fantastic. She looks very pleased. It seems the docs approve of all that you are doing and that is very reassuring. Large governmental systems are complex big machines and getting anything done is always time consuming and often difficult. Stay the course and things come together eventually. This is the same everywhere.
ReplyDeleteHi Kev,
ReplyDeleteMy daughter just celebrated (?) her 20th year as a type 1. She was on shot therapy from age 6-18. When she started college she decided to get on the pump and CGM monitor came out. The one thing I will tell you is don't lose the regimen when you go on the pump. It works for diabetics to be a bit regimented with timed meals. There will be foods that spike blood sugar and others that don't. And it will change as she matures and all the other hormones kick in. It is a tough disease. It's not just a couple of shots!! As long as you work together as a family and everyone is on board and knows what to do in a "low" event or on sick days your daughter will flourish. I can tell you, my daughter is 26 now. She is well and healthy and has a full life.
Take care and happy New year! Barb USA
I'm sorry to learn of your daughter's diabetes. I have been living with it for the past 15 years--diagnosed as a type 1 with a pancreas problem when I was in my early 50s. They generally do blood work on me every 6 months and an AIC every 3 months. Here, in the US, without the NHS, diabetes can be a real killer for those without insurance.
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