Over the years I have had a few chances to have a single sensor for CGM just so that I could fine tune my pump settings. Each time it has given me valuable insight and the ability for change but as they were just a trial then there was no real focus on what benefit it could bring if it was there permanently.
Now things have changed.... I have a full years supply of CGM sensors and I plan to get the most out of them. Now I am 3 weeks in and have had a sensor in everyday over that period. In the beginning it was very similar to the trial ones where I didn't see the benefit however once I truly realised that it was here and here to stay I opened my mind to what it could do.
Having the ability to confirm my body feelings is the first advantage to knowing your own body. I have able to show my self that the rapid rise or fall of the BSL would give me different feelings than when it just rises or drops slowly. Being able to look down at my pump and see a single or double arrow is the confirmation that I need to pay attention to what is going on. Have I eaten something and my insulin to carb ratios need tweaking, have I just done exercise and may need a temporary basal rate, am I under pressure and stress or is it just that my basal rate is off. All things that I can think about proactively with the sensor on where as before there would be a reactive element.
The chance to watch the slow rises and falls helps to manage good ranges. I can have little tweaks of insulin to ensure I can cut off the rise or I can have some small carbs to cut off a hypo. I know for me this equates to peace of mind for me and my family.
Please don't get me wrong I do not spend my day sitting there watching my pump now. I sort of wish sometimes that I wasn't so busy and I could but for me life always comes first. With saying that the alarm feature has helped me a number of times. I was in a meeting just the other day concentrating of forcasts and business news of the day. When in this mode I tend to turn off from my T1 so I can concentrate fully. I was feeling fine but all of a sudden I heard an alarm coming from my waist band and as I looked down it was an alarm telling me that my BSL had reached 2.3. Knowing that this had happened I quickly was able to excuse myself and test my blood for assureity and it wasn't quite as low as 2.3 but it was down to the low 3's and I needed to rectify it. I quickly had some glucose and was on my way moments later. With out the alarm I would have been in the dark until I finished my meeting and I took stock of what was going on. In the worst case scenario it could have dropped further and gone into a full blown hypo and I just don't want that at work ever.
Ok having another item stuck to you does take a little bit to get used to but what I can tell you the transmitter is a hell of a lot smaller and lighter than they used to be. Finding spots around the abdominal area, after 8 years of pumping does sometimes have its limits but I still have plenty of room. Sometimes when the pump site needs to change to the opposite side to where the transmitter is can be slightly annoying but thank god for the longer tube lines so that I am able to still wear the pump close to the sensor. Some times if you don't the connection becomes weakened. Not that it is a real big problem cause even if the sensor looses connection there is memory to hold up to 30 mins of data that it will download upon reconnection.
As with the pump, and anything else in life there are pros and cons. When starting the pump the large con for many is having something connected to them 24x7 is daunting and in some cases a reason not to choose pump therapy. However for me, just like the pump the pros out way the cons ten fold. The control, stability and awareness that the CGM brings adds an extra element to the battle that T1D can be. It allows you a sense of strength through knowledge and to get that in real time is great.
Now onto the difficult subject - the cost. To me this is still a luxury item. Once this 12 months is up I don't think it will be in my financial means to continue and for something that ultimately keep T1D's out of the hospital system it is something that should have some recognition of benefit from our governments or health insurance providers.
This is only the start because in the coming weeks I plan to put my 3 year old daughters sensor on and give you my feelings and thought on how it helps me to manage her and her levels. But at the minute I am letting her see it on me for a few weeks so that when I try to put it on her it just seems normal. If there any such thing in this T1D life.
Wednesday 30 April 2014
Wednesday 9 April 2014
What is worse!
Please don't think that I have a mis belief that T1D is the worst thing out there because I know it is far from it and people do suffer a great deal more however having a critical disease that you live with every second of every day is a big thing to deal with.
If I had a dollar for every person that told me (including my family) that it could be worse at least you don't have cancer. Well I have come across this situation recently with my mother being diagnosed with cancer. Every case is different but in this instance I have been met with mixed emotions. In one way I was devastated and concerned with the health and well being of my mum. We went through the action plan, and yes there were some drastic measures to address the cancer. In this case we were lucky because the cancer was caught early and with some surgery the cancer was gone and the further drastic measure of chemo was not going to be needed. So all in all a great result for something that can be a death sentence at times.
Now on the flip side. This may seem selfish but after living with T1D for 24 years and now having MS I could not stop myself from thinking that I wish I could have a day in hospital for an operation so I could live normally again. So I didn't have to calculate everything, everyday. So that I could go for a run without worry of a hypo. Of course this was a feeling that quickly past but I suppose it just put it into perspective that sometimes for a person that is living with a incurible disease there isn't anything worse in that second.
If I had a dollar for every person that told me (including my family) that it could be worse at least you don't have cancer. Well I have come across this situation recently with my mother being diagnosed with cancer. Every case is different but in this instance I have been met with mixed emotions. In one way I was devastated and concerned with the health and well being of my mum. We went through the action plan, and yes there were some drastic measures to address the cancer. In this case we were lucky because the cancer was caught early and with some surgery the cancer was gone and the further drastic measure of chemo was not going to be needed. So all in all a great result for something that can be a death sentence at times.
Now on the flip side. This may seem selfish but after living with T1D for 24 years and now having MS I could not stop myself from thinking that I wish I could have a day in hospital for an operation so I could live normally again. So I didn't have to calculate everything, everyday. So that I could go for a run without worry of a hypo. Of course this was a feeling that quickly past but I suppose it just put it into perspective that sometimes for a person that is living with a incurible disease there isn't anything worse in that second.
Saturday 5 April 2014
Why I have my toddler on a pump
This is going to be a very easy post and if you follow the link you get to see the man behind this blog. Head to
www.t1dpump.com.au
And click on the newly diagnosed video and enjoy.
www.t1dpump.com.au
And click on the newly diagnosed video and enjoy.
Traveling with T1D
Traveling at the best of times is exciting, fun and complicated all at the same time. Especially when going overseas you need to arrange tickets, accommodation, things to do and see and insurance just to name a small portion. What adds a great amount of complexity to this is traveling with 2 T1D's.
When nearly away for 3 weeks on the other side of the world I am predicting on a suitcase just for T1D supplies. I will need my lines and resivoirs for my pump, my insulin, my test strips to last the whole trip, my BGL meter, my spare BGL meter with spare test strips. Now that isn't it for me but now multiply these things out for my daughter. She will need even more lines and resivoirs (different to mine), her insulin, her test strips to last the whole trip, her meter, a debate on whether 1 spare meter or 2 is sufficient, oh and maybe some more test strips.
The items mentioned above are just the staples, next you need to think of all the worst case scenario's. Possibilities include -
1. Pump failure - luckily I have a spare old pump which is still in working order so for this to be used existing pump settings need to be both stored manually and electronically on the Medtronic site (user name and passwords need to be remembered).
2. A secondary plan if spare pump fails. This includes syringes and novo pens along with short acting insulin and long acting insulin. For us that is Novorapid and levimer. As with the spare pump we will still require the manual settings so that we can calculate the shots needed with food and the longer acting shots morning and night. We do the long acting broken down into the shorter time frames as we would be unsure of when a replacement pump will arrive and when it does we would want to connect again ASAP.
3. To split our supplies. If we are to put all supplies in the checking luggage and the bag goes missing then all hell would break loose. So the general plan is to take half on board and half in the check in. This ensures if the bag does go missing we would have enough supplies to get us through until the bag is found.
4. Sickness - this would have to be one of the biggest fears about going overseas with T1D. Luckily we are going to a first world country and we have taken out full unlimited insurance but to tell you he truth with a T1D that is only nearly 3y/o there are some countries I would bypass. If it was just me I could manage anywhere but the uncertainty of a 3 y/o not being able to express what is wrong is a problem. Any way things to take for sickness, ketone strips, back up ketone urine strips, clear identification stating medication and condition, if possible some hydro lite sachets (even if it is only 1or 2 it will help) and just a good plan of attack if sickness does come.
5. Try to know what is around in the area that we are going. For example shopping malls, supermarkets, shops and hospitals. If we end up in an emergency I need to know where to get things or where to get help.
6. Hypo treatments. Even though this point is an everyday plan it needs to be heightened as emotions and excitement could play a part in the unknown part of T1D. Take more than we think we need.
7. Hyper treatments. Other than insulin and water there isn't much else but we do have to take into account the extra insulin just in case.
Ok now that we have gone through and packed our T1D supplies now I suppose we need to pack the normal stuff everyone packs like clothes, toiletries and such. I tell you what the supplies that will be with us will more than likely take up enough room to fill 1 suit case or near enough to. I wonder if airlines would take that I to account. I guess not but I always like to see there faces at the airport when they see a full bag of needles and supplies go through the scanner.
When nearly away for 3 weeks on the other side of the world I am predicting on a suitcase just for T1D supplies. I will need my lines and resivoirs for my pump, my insulin, my test strips to last the whole trip, my BGL meter, my spare BGL meter with spare test strips. Now that isn't it for me but now multiply these things out for my daughter. She will need even more lines and resivoirs (different to mine), her insulin, her test strips to last the whole trip, her meter, a debate on whether 1 spare meter or 2 is sufficient, oh and maybe some more test strips.
The items mentioned above are just the staples, next you need to think of all the worst case scenario's. Possibilities include -
1. Pump failure - luckily I have a spare old pump which is still in working order so for this to be used existing pump settings need to be both stored manually and electronically on the Medtronic site (user name and passwords need to be remembered).
2. A secondary plan if spare pump fails. This includes syringes and novo pens along with short acting insulin and long acting insulin. For us that is Novorapid and levimer. As with the spare pump we will still require the manual settings so that we can calculate the shots needed with food and the longer acting shots morning and night. We do the long acting broken down into the shorter time frames as we would be unsure of when a replacement pump will arrive and when it does we would want to connect again ASAP.
3. To split our supplies. If we are to put all supplies in the checking luggage and the bag goes missing then all hell would break loose. So the general plan is to take half on board and half in the check in. This ensures if the bag does go missing we would have enough supplies to get us through until the bag is found.
4. Sickness - this would have to be one of the biggest fears about going overseas with T1D. Luckily we are going to a first world country and we have taken out full unlimited insurance but to tell you he truth with a T1D that is only nearly 3y/o there are some countries I would bypass. If it was just me I could manage anywhere but the uncertainty of a 3 y/o not being able to express what is wrong is a problem. Any way things to take for sickness, ketone strips, back up ketone urine strips, clear identification stating medication and condition, if possible some hydro lite sachets (even if it is only 1or 2 it will help) and just a good plan of attack if sickness does come.
5. Try to know what is around in the area that we are going. For example shopping malls, supermarkets, shops and hospitals. If we end up in an emergency I need to know where to get things or where to get help.
6. Hypo treatments. Even though this point is an everyday plan it needs to be heightened as emotions and excitement could play a part in the unknown part of T1D. Take more than we think we need.
7. Hyper treatments. Other than insulin and water there isn't much else but we do have to take into account the extra insulin just in case.
Ok now that we have gone through and packed our T1D supplies now I suppose we need to pack the normal stuff everyone packs like clothes, toiletries and such. I tell you what the supplies that will be with us will more than likely take up enough room to fill 1 suit case or near enough to. I wonder if airlines would take that I to account. I guess not but I always like to see there faces at the airport when they see a full bag of needles and supplies go through the scanner.
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