Hi All,
Today my daughter came to me wanting to have a dive into her daily thoughts. The ones she see's as secrets and the ones that scare her. I asked her if she would like to share them with you as I thought it would be a different insight into how this disease plays out in the mind of one that has had it for 4 years but still so young. Note all answers are her words from the questions I asked.
How would you describe Type 1 Diabetes?
Very hard and very scary. Cause I have to deal with needles and stuff like that.
Is there anything you can't do with T1D?
I can do everything but I cant go sliding down the slides at the park on my belly cause I'm afraid my pump will get scratched and hurt.
Can you describe what its like having a pump?
It's kind of annoying when sleeping as it can stick into you. Its actually true it can stick into you. Sometimes when I go to fun things I am able to forget that the pump is even there. Then when I stop I know its there again. I would much rather have the pump than have needles every time i want to eat something.
I have to thank my mum for saving my life as she tested me first and dad you saved my life for getting me the pump.
What scares you about T1D?
What scares me? It just that the needles and sensors can hurt when we do the changes. Even taking them off is such a pain. It drives me mad and scared.
Do you ever forget that you have it?
Ummm my sensor I know is always there but I forget that my site is there. The sensor is a big lump but the site is flat and I sometimes go to scratch and realize its there.
I never forget that I have diabetes and sometimes when I see other kids without it I start to cry cause I know I am not like them.
What do you think it would be like without T1D?
I think it would be more fun and happier
Why? -
Cause other kids can run
You can't run?
I can but I might go low. Everyday when I run I think I have to slow down cause I don't want to go low. Everyday my mum and dad have to bring a juice everywhere like a jungle gym or playground just in case.
Why would it be happier?
It would just be running around doing what ever I want to do. Diabetes kind of keeps you down.
Why does it keep you down? You swim, do cheer leading and everything your sisters do...
But when I went to school my mum had to come as no people there knew how to manage diabetes. Sometimes I wish for Christmas that my diabetes would go. I even asked my nanny for my diabetes to go away.
Some scientists found something for type 2 but I'm type 1 and it is very hard.
What would you tell a friend you just met about your diabetes? -
I would tell them that I have diabetes which is your pancreas makes insulin however mine doesn't and my pump gives me the insulin I need. It doesn't matter if I run around you just play and nothing will stop me.
Talk about site changes and sensor changes?
My site I can't explain it, it is very scary. Every time my mum and dad are about to do it I see the needle and I tell them to hide it cause it scares me and my mind says that it will hurt. The sensor isn't that bad because I can't see the needle and when it happens it just makes me jump a little. I always say I can do it.
How is your life?
When I have diabetes the needles are very hard cause they scare me because they are going to hurt me but everyday I tell myself I will be alright and nothing can stop me. When I am sick I don't let it keep me down. I get up and do what I usually do and let nothing stop me. I hope in pools, Play at parks and do what I usually do.
If you had one message to send to everyone about T1 what do you think it would be?
I would say your the lucky one cause you don't have diabetes. I would want them to teach me about being a normal kid.
Tuesday 20 February 2018
Friday 16 February 2018
The Exciting next step
Ok so first of all an update on the health kick with the 640g and Smartguard . It has been around 4 months and I’m happy to say I have never felt better. I have lost over 15kg and increased muscle mass and have done this with no major hypos. I monitor my levels very closely and make sure Smartguard is in place so that it stops me from having to treat minor lows.
I have had what I would say is a good HbA1C over the last 14 years with it predominantly between Ng I. The 5’s however I was elated when I got my recent results and I had gone to 4.9.
There is 2 ways to look at the A1C result because it can be misleading or it can look false because if you have a lot of highs and lows it will average it out so you don’t see the peaks and troughs which as we all know is bad. It needs to be seen in conjunction with everyday results also.
If I had been having excessive amounts of treaded hypos I wouldn’t be happy with a 4.9 result at all however knowing through having my pump and CGM on my side always I know that I am within my set range 99.99% of the time which is great to me.
Now to what I’m even more excited about - the future of the technology that is coming for us. Having the 640g pump with the CGM and Smartguard has been a game changer for both me and my daughter , in all honesty our whole family. But this is only a step towards the goal of being able to have a certified half closed loop system that will be able to monitor your BGL’s in real-time and make decisions for you. Scary I know but with the confidence I now have with the current Smartguard instance I have complete faith that the next step will make an even better impact on living life with this disease.
Do not get me wrong we are still hanging out for a cure but I do t think we are much closer to that than we were some 30 odd years ago when I was diagnosed so I sit and watch and take advantage of the technology that will take at least one decision from me and automate it in a natural way.
So what am I talking about when I say a certified half closed loop system. So the Medtronic 640g pump was only the first step of many. This system predicts lows and shuts down the pump to lessen the curve of the drop. Then when rising again it will restart giving the set basal rate. This works great but there is still the need to manage basal rates and also manage to bolus and give corrections for higher BSL’s.
Now the next step is the 670g pump. This has been released in the US however we are waiting for the approval here in Aus but we hope by early 2019 it will be here. This pump when combined with the CGM takes automation further. It still has the prediction of the lows however when in auto mode the algorithms take the need of basal rates away because it reads your BSL and makes real time calculations to set the rates automatically. It also self corrects for highs also. To me this is amazing... scary but amazing. This still isn’t a fully closed loop artificial pancreas but being able to focus on each layer and step allows for the step that is a little closer to having a device with each component and layer working in unison.
One thing I taught myself a long time ago with this disease is that everything we do at one point or another is scary. Whether it was the first time you gave yourself injections, the time where you had a bad low, the time where a virus threw you into DKA or even the time where you move to a pump and start to slowly trust that it can help you control things. All of these scary times can be overcome by information, practice and giving it a go. I tell my daughters in general life that to understand something and to have a true opinion you need to at least try and it is certainly no different here.
This technology effects our whole family, it allows us to sleep at night knowing that we won’t just get woken up with alarms but we will have the pump working with us to keep us safe and to allow us to wake up the next day. It allows my daughters (and trust me they are now old enough to hold me accountable if I am having a rough management day) to know that everything will be ok. Not just now but long I to the future as we stand the best possibility of keeping complications at bay by having great control.
I tell you what I’m more excited than fearful with this disease by having technology that will make a long life easier and more manageable. No it’s not a cure but while we wait I am looking forward to the steps to come because this is only the start.
I have had what I would say is a good HbA1C over the last 14 years with it predominantly between Ng I. The 5’s however I was elated when I got my recent results and I had gone to 4.9.
There is 2 ways to look at the A1C result because it can be misleading or it can look false because if you have a lot of highs and lows it will average it out so you don’t see the peaks and troughs which as we all know is bad. It needs to be seen in conjunction with everyday results also.
If I had been having excessive amounts of treaded hypos I wouldn’t be happy with a 4.9 result at all however knowing through having my pump and CGM on my side always I know that I am within my set range 99.99% of the time which is great to me.
Now to what I’m even more excited about - the future of the technology that is coming for us. Having the 640g pump with the CGM and Smartguard has been a game changer for both me and my daughter , in all honesty our whole family. But this is only a step towards the goal of being able to have a certified half closed loop system that will be able to monitor your BGL’s in real-time and make decisions for you. Scary I know but with the confidence I now have with the current Smartguard instance I have complete faith that the next step will make an even better impact on living life with this disease.
Do not get me wrong we are still hanging out for a cure but I do t think we are much closer to that than we were some 30 odd years ago when I was diagnosed so I sit and watch and take advantage of the technology that will take at least one decision from me and automate it in a natural way.
So what am I talking about when I say a certified half closed loop system. So the Medtronic 640g pump was only the first step of many. This system predicts lows and shuts down the pump to lessen the curve of the drop. Then when rising again it will restart giving the set basal rate. This works great but there is still the need to manage basal rates and also manage to bolus and give corrections for higher BSL’s.
Now the next step is the 670g pump. This has been released in the US however we are waiting for the approval here in Aus but we hope by early 2019 it will be here. This pump when combined with the CGM takes automation further. It still has the prediction of the lows however when in auto mode the algorithms take the need of basal rates away because it reads your BSL and makes real time calculations to set the rates automatically. It also self corrects for highs also. To me this is amazing... scary but amazing. This still isn’t a fully closed loop artificial pancreas but being able to focus on each layer and step allows for the step that is a little closer to having a device with each component and layer working in unison.
One thing I taught myself a long time ago with this disease is that everything we do at one point or another is scary. Whether it was the first time you gave yourself injections, the time where you had a bad low, the time where a virus threw you into DKA or even the time where you move to a pump and start to slowly trust that it can help you control things. All of these scary times can be overcome by information, practice and giving it a go. I tell my daughters in general life that to understand something and to have a true opinion you need to at least try and it is certainly no different here.
This technology effects our whole family, it allows us to sleep at night knowing that we won’t just get woken up with alarms but we will have the pump working with us to keep us safe and to allow us to wake up the next day. It allows my daughters (and trust me they are now old enough to hold me accountable if I am having a rough management day) to know that everything will be ok. Not just now but long I to the future as we stand the best possibility of keeping complications at bay by having great control.
I tell you what I’m more excited than fearful with this disease by having technology that will make a long life easier and more manageable. No it’s not a cure but while we wait I am looking forward to the steps to come because this is only the start.
Subscribe to:
Posts (Atom)