This world is a strange place. There are beliefs in this world that say before you come into this world your spirit chooses the lessons you need to learn and set out your life in front of you. A preset life if you like..... Now if that is the case, and I am not saying either way, then I really must have had some seriously boring past life's or I am just a sadistic bastard. After numerous tests in the past I was starting to believe that the results of the drooped left eye, tremors in the right arm, dizziness, overall body tiredness and, the small one, scaring on the brain was just as the specialist said just caused by stress and it would just be a case of managing that..... Today changed that belief.
Waking up this morning I noticed that my left eye was blurry. I didn't think to much of it and in fact headed off to my quarterly diabetes review which should only take an hour or so. I was also looking forward to getting my HbA1C results to see if it had changed after I have been focusing on my daughters T1 a little over mine. On a great note my HbA1C is once again 6.1.... My daughter and I match perfectly as hers was also 6.1.
After getting to the appointment I thought I better mention that I wanted them to check my eyes just in case it was something and they jumped to it. They seemed more stressed than I initially was but now I see why. They took some photo's of the veins and arteries which all looked good... No T1 problems. I then saw the endocrinologist and once again they said from a T1 perspective everything was great no signs of celiac, no high blood pressure, no kidney problems and a great HbA1C. But then she asked my about my eye. She informed me that we needed to be more safe than sorry and after reading the report from a recent MRI she said she strongly suggest sending me over to the eye causality to have the checks done. She also informed me that there were suggestions agin from the report that MS was a likely cause. I finished up my appointment and got directions to the eye department.
Upon getting there I take a seat in the over populated waiting room and wait my turn. After around 20 mins I get called into the nurses office to have an initial check and to have the drops that cause the eyes to dilate dropped into place. I suppose it was the start of a problem when before the nurse put the drops in she needed to have the doctor come in to see if it was safe to do so. The doctor came in and took a look and asked if this blurred vision only started this morning to which I replied "yes and it hasn't ever happened before". She took a quick look and informed the nurse to put the drops in and send me to get a scan of the eyes.
The scan took place and the operator said everything looked fine which was great to hear however it still left questions as to what was the cause of my problems. After another 1.5 hours waiting I saw the eye specialist and put my eyes through the wringer. More drops in to make them numb to test the pressure. Yes they had a device to push on my eye ball to see how we'll it rebounded. For a person who doesn't like things to do with the eye this was horrifying. I couldn't imagine putting in contact lenses. The results of the pressure test was that both eyes were a little high. I was then made to look up, down, left, right and everywhere in between while the doctors scoured every part of my eyes. After the review theory thing still looked fine however it was still blurry and then she held up a red pen and asked me to close my left eye and if the colour I saw in the right eye was 10 out of 10 when I changed and looked through my left I would have to rate the colour I saw. I swapped over and I could only rate the colour a 3. This scared the hell out of me. To not be able to see properly and now not to see the same colours, this got my heart pounding and still does.
The doctor informed me that the good news is the eye itself looks good however she thought another MRI was necessary. She didn't tell me what she thought it was but said she had to speak to the registrar to make sure what she has looked at is correct. Confirmation if you like.
I went down to another waiting room and 15 minutes later I was called again and another quick review was done. Afterwards the registrar informed me that the diagnosis for my eye was optic neuritis. Along with the results of the initial MRI it looks like the beginning of MS. Another auto immune disease. If one isn't enough now another one that has treatment but also some medications that conflict with my insulin regime.
More tests to come and a big change ahead and I am hoping this will be the last major change for a long time. The fear is high for me and my family but we will progress and I will win.
Wednesday 20 November 2013
Monday 18 November 2013
Misconception breaks my heart
Today I was heading to work like I do everyday however as I listened to the radio I listened to once again a news report that mistakenly reported that the doctors of the country were partitioning the government to think about giving diabetics and obese people access to free gym memberships because this would mean that it would be reversed and it would take a burden off the healthcare system because there would be less people with problems........ As you can imagine at that point my blood began to boil again I picked up the phone to try to speak to the team discussing this to try to put the context around the report and inform them to report the facts correctly.
The facts they don't know and don't see is the heartbreak of my 2 year old daughter begging not to do a 1, 2, 3 (this is what she knows is a set change or the needle she has to have to ensure her pump will continue to work and not get infections) she screams trying to run and hide. She tries to cover where the next shot will be. Even though I have been giving injections to myself for 23 years the act of giving a needle to a 2 year old little baby is something that I am never going to get used to. Having to draw blood from those tiny little fingers up to 18 to 20 times a day, making sure we rotate the testing spots to make sure we don't over use a particular finger is imperative to making sure her fingers stay strong.
My daughter and I were not overweight upon diagnosis and no matter the amount of exercise done could not stop us from contracting this disease. As written about before the major difference is that type 1 predominantly is diagnosed as a child and is a life long auto immune disease.
The general information given to a large population this morning is the exact reason why the majority of people think that T1D is something comes with fault and that it is on our own head to get rid of it. It is the reason why you get asked if you ate badly as a child or was over weight.
The ability to spread the word on the different types of diabetes is difficult to say the least. We have world diabetes day where I think, at least locally, a clear definition is made however we then take 2 steps backwards again with the generalisation. To have a separate name to truly represent the auto immune disease that we live with and will continue to live with long into the future would be a great result as it is way to easy to generalise and while the media have the opportunity to they will because it is easier.
Every T1 in the world, whether they are 2, 22 or 82, deserve to have the respect and understanding of the people who think it is their or their parents fault for having this. Maybe one day the powers to be will listen and make the change that so many of us are calling for. This would then help my little baby along with all the other children to grow up with understanding rather than misconceptions and ignorance.
The facts they don't know and don't see is the heartbreak of my 2 year old daughter begging not to do a 1, 2, 3 (this is what she knows is a set change or the needle she has to have to ensure her pump will continue to work and not get infections) she screams trying to run and hide. She tries to cover where the next shot will be. Even though I have been giving injections to myself for 23 years the act of giving a needle to a 2 year old little baby is something that I am never going to get used to. Having to draw blood from those tiny little fingers up to 18 to 20 times a day, making sure we rotate the testing spots to make sure we don't over use a particular finger is imperative to making sure her fingers stay strong.
My daughter and I were not overweight upon diagnosis and no matter the amount of exercise done could not stop us from contracting this disease. As written about before the major difference is that type 1 predominantly is diagnosed as a child and is a life long auto immune disease.
The general information given to a large population this morning is the exact reason why the majority of people think that T1D is something comes with fault and that it is on our own head to get rid of it. It is the reason why you get asked if you ate badly as a child or was over weight.
The ability to spread the word on the different types of diabetes is difficult to say the least. We have world diabetes day where I think, at least locally, a clear definition is made however we then take 2 steps backwards again with the generalisation. To have a separate name to truly represent the auto immune disease that we live with and will continue to live with long into the future would be a great result as it is way to easy to generalise and while the media have the opportunity to they will because it is easier.
Every T1 in the world, whether they are 2, 22 or 82, deserve to have the respect and understanding of the people who think it is their or their parents fault for having this. Maybe one day the powers to be will listen and make the change that so many of us are calling for. This would then help my little baby along with all the other children to grow up with understanding rather than misconceptions and ignorance.
Friday 15 November 2013
A day in the life with someone that needs a single AAA battery to survive
It all begins the same place as most days for most people in bed, or your place of rest. The first thoughts upon waking is ok how do I feel? Does my blood feel thick?, am I abnormally thirsty?, am I busting to go to the toilet?, am I light headed, am I acting weird (like do I know what I am doing), am I shaking or is my lips tingling? Oh then I think "I woke up something must have gone right". I think all of these things like a check list as before I find out what my actual BSL is I try to determine what state I am in.
In the past I have woken up with a low BSL and even though at the time I have gone back to a child like state that is a fleeting moment before the reality of what has happened comes crashing down around me. My wife has told me that when this happens it is difficult to reason with me as I outright deny that anything is wrong and that I am low. All that she can do is point me in the direction of sugar and hope that my subconcious state drives me to eat. I usually does as the human body is a fascinating thing. Once the sugars kick in the emotional response tuns back on as the adrenalin subsides and then the tiredness. This is not a fun morning.
So once the checklist is done I can usually have a rough estimate of where I am. Sometimes I am way off but that usually has another factor like start or end of sickness. I get up and check my BSL. This morning 4.6. So in range but on the low side of range. I would have rather been in the 5-6 range (my golden numbers). Anyway as I was not hypo it was then off to get ready for work. If I had been low the process would have been swapped and it would have been breakfast first to ensure the BSL rises.
On this occasion after the shower and getting dressed it was breakfast time. Now yesterday after having my 3 weetbix with spender on them I found myself running high a number of hours after so today it was back to the drawing board just so that I could recall rate my minds calculations as to how many carbohydrates I was to b in taking. 3 x Aldi brand weetbix equals 30 gms of carbohydrates and once I added the milk I gave myself 45 gms into my pump to work out the insulin that was to be bolused into me to counter and convert the carbs into my energy. At the same time as working that out I logged it away as a reference for other days and also realised that I had given myself only 40gms the day before so that could have explained the difference in my BSL readings.
After breakfast I then checked to make sure that my insulin level in my pump resivour was ample to see me through the day. If it wasn't then I would have to decide on a set change now or to take my supplies and do the change a work. I don't like doing it but sometimes it is necessary. Just as I am about to check the resivour and I hear the well known beeps of my pump telling me what my intuition already knew, that my insulin was running low. I now know I have 24 units of insulin left which should take me through half of the day or longer if I go low carb for the day. I then have to collect my supplies for the change to go to work.
1. One vial of short acting insulin
2. One resivour for my pump
3. One line and cannula that needs to be changed so that infection doesn't happen
4. My sure click set changer. This is a little spring loaded device that shoots the needle into me
5. Some alcohol wipes just in case
6. Some needles and syringes just in case the line or cannula doesn't take
Along with this kit and no matter where I go or what I do I also bring my trusty blood glucose tester. Yes I went through the years of hating it and never actually wanting to use it but it is now my best friend and worst enemy depending on what it tells me my sugar level is doing.
With my supplies I can then do what a normal person could have done 10 minutes earlier, I leave for work.
The thoughts in the morning where I am constantly checking how I am feeling is like a record stuck on a loop. As soon as I know I am fine and that I start getting on with things I go back to making sure everything is on track. This may only be a sub conscience 10 second check but it is there over and over.
The morning goes well with meeting internally and with customers however as I head to 11am I feel my mind starting to stray. I feel the difficulty to comprehend everything that is being said. Being in a meeting with a customer trying to secure a $100k + contract I keep the alarm bells to myself knowing that the meeting is no more than 5 minutes to completion. In my mind while staying utterly engaged with my customer I run through the check to gauge the level of the hypo I was heading into. Ok sweats have started and my mind is only beginning to slow down. I must be in the low 3's ok I have time to get this done and fix the situation. I run through my mind the closest place to buy sugar or something that is sugar filled. One thing that I do when ever I am going somewhere unfamiliar is to scope out the area on my way there taking note of what is around. Yes if you are another T1 or are a medical professional I can hear your voices now saying "why don't you carry a spare amount of quick acting glucose with you at all time?" We'll the answer is easy one I run out of room as I do not carry a man bag and two it means having more self control than I have in this busy life. If I have some lollies close by I will want to eat them hypo or not so I choose to live in this manner. I do have some glucose tablets in my car just in case but I try to forget they are there.
I wrap up my meeting hearing the words I was there to hear "we are just going through the sign off process and you should have a PO shortly" and my attention is focused on getting to the coffee shop downstairs to get a full strength soft drink (normal coke, sprite, lift or fanta. I tend to find lift doesn't work as well as there is a little less sugar per serving). My lips are now tingling and my mind is cloudy but I get there and order. Once I consume my drink I have to be careful as my body is craving energy and as it takes time to recover and bring my sugars back to the right level you can over correct and head into what I call a diabetic roller coaster. This is where you over correct with sugar and head into the teens and you start feeling terrible on the other end of the scale. Once you get that high you are so tired and you just want it down again that you run the possibility of going hypo again hence the ups and downs of a roller coaster. I like normal roller coasters but this type is the one I can't stand.
Also knowing that lunch time was coming up I needed to take that into consideration also. I rectified my hypo and headed back to the office. Funny thing is that on the outside everything for a hypo life seems normal but on the inside once the adrenalin subsides the tiredness kicks in even though the day continues. There are many times I wish I could just curl up in bed after a hypo but that is not acceptable to me as life comes first and the diabetes will fit in with me and not the other way around.
It is now time to change the line and cannula site for my pump. I would of years ago hidden myself away with thought that people will not understand and will judge. Now I just do the change at my desk. I take out my supplies, fill the resivour and choose the new site on my stomach for the injection. Seeing as the cannula is a small plastic tube that can have the possibility if bending it is imperative that I don't remove the old site until I know the new one has been inserted. I pick the spot and inject. The new site is successful and I remove the old site and tape around it. Thankfully this one doesn't bleed as it is very annoying being at work and explaining a blood stain on your shirt.
Lunch time, it is now time to work out what I have. Do I be good and have a salad which means little to no insulin? Long term benefits good, short term benefits good, will power needed high. Do I have a sandwich? Insulin intake 30grams of carbohydrate for a standard sandwich with no fancy fillings. Long term and short term benefits good, will power needed minimal. Or do I go with maccas or a fast food? Between 50 to 80 grams of carbs and that is being nice. Short term benefit low long term benefit even lower and will power needed not to high. I do the right thing and meet at the sandwich. 30 grams will give me some energy to get through the after noon without having a huge intake of insulin. That along with a Pepsi max, my one vice in this life, I set off after doing a BSL test and it being 7.6.
The afternoon rolls on while I feel the usual rise in BSL after eating the insulin kicks in and brings it back into line. The conscience internal checks continue all day and another BSL is taken mid afternoon and this reading is the one that makes me smile on the inside every time I see it. 5.6. The perfect number, this means that today I am winning the war that I am battling. That even though you have the highs and lows there are times that you do everything perfectly and these are the times that you know are going to keep the complications away for another day.
Time to head home. Before turning the car on another BSL is needed. One of the stipulations of driving with T1 is that you don't drive low or high. No I don't do it every time as I know when things are off but don't tell anyone. However I test and even though nothing has been consumed since the last BSL it is now sitting at 6.3. Still good but not the magic number.
At home is interesting as it isn't my priority to make me first it is a matter of making sure my family are ok. This means turning the perception down a little and focusing on the children and my wife. Even more so now that my youngest daughter has been diagnosed with T1 also. The night involves calculating my requirements and my daughters and as you can imagine a 2 year old who is fussy at the best of times is very much a juggling act.
I go through the night ensuring that my and my daughters levels are ok. Before going to sleep the thought process of hope I don't go low/hypo. It has happened a few times in my 23 years where I have gone low while asleep and basically lost time and couldn't contro my behaviour. This is the worst way possible to start a day as it means my mind and body have to play catch up all day. This isn't to mention the effect of a low to my family. The behaviour can cause my family fear and apprehension around what is happening and want to make surei am ok. During times of sickness it will usually mean broken sleep with night tests and now with my daughter the night tests are a standard , not that she realises yet.
The reason in my heading I mention the triple AAA battery is that this is what my pump requires to stay activated. With out that I am not the bionic man.
In the past I have woken up with a low BSL and even though at the time I have gone back to a child like state that is a fleeting moment before the reality of what has happened comes crashing down around me. My wife has told me that when this happens it is difficult to reason with me as I outright deny that anything is wrong and that I am low. All that she can do is point me in the direction of sugar and hope that my subconcious state drives me to eat. I usually does as the human body is a fascinating thing. Once the sugars kick in the emotional response tuns back on as the adrenalin subsides and then the tiredness. This is not a fun morning.
So once the checklist is done I can usually have a rough estimate of where I am. Sometimes I am way off but that usually has another factor like start or end of sickness. I get up and check my BSL. This morning 4.6. So in range but on the low side of range. I would have rather been in the 5-6 range (my golden numbers). Anyway as I was not hypo it was then off to get ready for work. If I had been low the process would have been swapped and it would have been breakfast first to ensure the BSL rises.
On this occasion after the shower and getting dressed it was breakfast time. Now yesterday after having my 3 weetbix with spender on them I found myself running high a number of hours after so today it was back to the drawing board just so that I could recall rate my minds calculations as to how many carbohydrates I was to b in taking. 3 x Aldi brand weetbix equals 30 gms of carbohydrates and once I added the milk I gave myself 45 gms into my pump to work out the insulin that was to be bolused into me to counter and convert the carbs into my energy. At the same time as working that out I logged it away as a reference for other days and also realised that I had given myself only 40gms the day before so that could have explained the difference in my BSL readings.
After breakfast I then checked to make sure that my insulin level in my pump resivour was ample to see me through the day. If it wasn't then I would have to decide on a set change now or to take my supplies and do the change a work. I don't like doing it but sometimes it is necessary. Just as I am about to check the resivour and I hear the well known beeps of my pump telling me what my intuition already knew, that my insulin was running low. I now know I have 24 units of insulin left which should take me through half of the day or longer if I go low carb for the day. I then have to collect my supplies for the change to go to work.
1. One vial of short acting insulin
2. One resivour for my pump
3. One line and cannula that needs to be changed so that infection doesn't happen
4. My sure click set changer. This is a little spring loaded device that shoots the needle into me
5. Some alcohol wipes just in case
6. Some needles and syringes just in case the line or cannula doesn't take
Along with this kit and no matter where I go or what I do I also bring my trusty blood glucose tester. Yes I went through the years of hating it and never actually wanting to use it but it is now my best friend and worst enemy depending on what it tells me my sugar level is doing.
With my supplies I can then do what a normal person could have done 10 minutes earlier, I leave for work.
The thoughts in the morning where I am constantly checking how I am feeling is like a record stuck on a loop. As soon as I know I am fine and that I start getting on with things I go back to making sure everything is on track. This may only be a sub conscience 10 second check but it is there over and over.
The morning goes well with meeting internally and with customers however as I head to 11am I feel my mind starting to stray. I feel the difficulty to comprehend everything that is being said. Being in a meeting with a customer trying to secure a $100k + contract I keep the alarm bells to myself knowing that the meeting is no more than 5 minutes to completion. In my mind while staying utterly engaged with my customer I run through the check to gauge the level of the hypo I was heading into. Ok sweats have started and my mind is only beginning to slow down. I must be in the low 3's ok I have time to get this done and fix the situation. I run through my mind the closest place to buy sugar or something that is sugar filled. One thing that I do when ever I am going somewhere unfamiliar is to scope out the area on my way there taking note of what is around. Yes if you are another T1 or are a medical professional I can hear your voices now saying "why don't you carry a spare amount of quick acting glucose with you at all time?" We'll the answer is easy one I run out of room as I do not carry a man bag and two it means having more self control than I have in this busy life. If I have some lollies close by I will want to eat them hypo or not so I choose to live in this manner. I do have some glucose tablets in my car just in case but I try to forget they are there.
I wrap up my meeting hearing the words I was there to hear "we are just going through the sign off process and you should have a PO shortly" and my attention is focused on getting to the coffee shop downstairs to get a full strength soft drink (normal coke, sprite, lift or fanta. I tend to find lift doesn't work as well as there is a little less sugar per serving). My lips are now tingling and my mind is cloudy but I get there and order. Once I consume my drink I have to be careful as my body is craving energy and as it takes time to recover and bring my sugars back to the right level you can over correct and head into what I call a diabetic roller coaster. This is where you over correct with sugar and head into the teens and you start feeling terrible on the other end of the scale. Once you get that high you are so tired and you just want it down again that you run the possibility of going hypo again hence the ups and downs of a roller coaster. I like normal roller coasters but this type is the one I can't stand.
Also knowing that lunch time was coming up I needed to take that into consideration also. I rectified my hypo and headed back to the office. Funny thing is that on the outside everything for a hypo life seems normal but on the inside once the adrenalin subsides the tiredness kicks in even though the day continues. There are many times I wish I could just curl up in bed after a hypo but that is not acceptable to me as life comes first and the diabetes will fit in with me and not the other way around.
It is now time to change the line and cannula site for my pump. I would of years ago hidden myself away with thought that people will not understand and will judge. Now I just do the change at my desk. I take out my supplies, fill the resivour and choose the new site on my stomach for the injection. Seeing as the cannula is a small plastic tube that can have the possibility if bending it is imperative that I don't remove the old site until I know the new one has been inserted. I pick the spot and inject. The new site is successful and I remove the old site and tape around it. Thankfully this one doesn't bleed as it is very annoying being at work and explaining a blood stain on your shirt.
Lunch time, it is now time to work out what I have. Do I be good and have a salad which means little to no insulin? Long term benefits good, short term benefits good, will power needed high. Do I have a sandwich? Insulin intake 30grams of carbohydrate for a standard sandwich with no fancy fillings. Long term and short term benefits good, will power needed minimal. Or do I go with maccas or a fast food? Between 50 to 80 grams of carbs and that is being nice. Short term benefit low long term benefit even lower and will power needed not to high. I do the right thing and meet at the sandwich. 30 grams will give me some energy to get through the after noon without having a huge intake of insulin. That along with a Pepsi max, my one vice in this life, I set off after doing a BSL test and it being 7.6.
The afternoon rolls on while I feel the usual rise in BSL after eating the insulin kicks in and brings it back into line. The conscience internal checks continue all day and another BSL is taken mid afternoon and this reading is the one that makes me smile on the inside every time I see it. 5.6. The perfect number, this means that today I am winning the war that I am battling. That even though you have the highs and lows there are times that you do everything perfectly and these are the times that you know are going to keep the complications away for another day.
Time to head home. Before turning the car on another BSL is needed. One of the stipulations of driving with T1 is that you don't drive low or high. No I don't do it every time as I know when things are off but don't tell anyone. However I test and even though nothing has been consumed since the last BSL it is now sitting at 6.3. Still good but not the magic number.
At home is interesting as it isn't my priority to make me first it is a matter of making sure my family are ok. This means turning the perception down a little and focusing on the children and my wife. Even more so now that my youngest daughter has been diagnosed with T1 also. The night involves calculating my requirements and my daughters and as you can imagine a 2 year old who is fussy at the best of times is very much a juggling act.
I go through the night ensuring that my and my daughters levels are ok. Before going to sleep the thought process of hope I don't go low/hypo. It has happened a few times in my 23 years where I have gone low while asleep and basically lost time and couldn't contro my behaviour. This is the worst way possible to start a day as it means my mind and body have to play catch up all day. This isn't to mention the effect of a low to my family. The behaviour can cause my family fear and apprehension around what is happening and want to make surei am ok. During times of sickness it will usually mean broken sleep with night tests and now with my daughter the night tests are a standard , not that she realises yet.
The reason in my heading I mention the triple AAA battery is that this is what my pump requires to stay activated. With out that I am not the bionic man.
My daughters new best friend!
My daughters best friend is attached to her side night and day, her best friend keeps her from the lows and the highs, her best friend is forever reliable, her best friend helps her with her calculations, her friend is forgiving when things don't go as planned. Her best friend can be a pain in her butt (but that is only if mum and dad hit a nerve)
Her best friend is her Medtronic insulin pump.
From the second day of diagnosis my daughter has accepted a little device that is attached to her via a needle cannula. It's somewhat familiar as she has always seen one on dad so I think it was a blessing in that sense but in every way she could have rejected as quickly as she accepted it.
She runs, jumps, tackles, sleeps, throws tantrums and is in general a normal 2 year old toddler with her pump. I will always teach her that there is nothing she can't do as long as she has drive to do it.
After 2.5 months of having T1D my daughter has had her first HbA1C and as the drums roll...... 6.1. I was proud of her and proud of my wife's efforts with managing not only T1 in general but also understanding the carbohydrate counting and the functions of the pump so quickly. On MDI people work for years to be able to see results like this, and yes I do understand that this result will fluctuate as my daughter goes through her developmental stages, but this is the best start I could have given her. The life on the Medtronic pump is essential to our success. It allows us to be able to give her what she needs using the inbuilt Bolus Wizard. As she is so small it allows us to give very small increments of insulin. It caters for different events and types of foods through the dual and square wave boluses. It takes away the need for slow acting insulin that in my opinion caused a lot of my severe hypo's.
Moving from MDI allowed me to put some flexibility back into what is a very regimented life. Naturally the body produces a base line of insulin to make sure that it stays level and then produces more once it realises that carbohydrates have been consumed and needs to be broken down into energy. Slow release insulin does this job but what it doesn't do is allow you to have varying levels depending on what your body requires at any part of the day and night. For example my body requires the most amount of insulin during the first part of the night while I sleep but then at 2am my requirements drop and so does my insulin intake. This allows my BSL's to stay stable instead of jumping up and down causing you to possibly walking the line of hypo in your sleep or running high.
Even though the pump isn't a cure and it isn't automatically adjusted making it as good as the information you put into it it is a management solution that gives a great amount of control each and every day and night.
Another element of the Medtronic pump that made me choose it over the others available in the market was the ability to read the clinical data. The pump connect via Bluetooth to a USB antenna which allows you to download the information to a central location (a cloud if you like) and with a single login you are able to look at days, weeks and months worth of data to find trends. You see the insulin given for bolusing, basal rates and corrections. You see the BSL readings entered into the pump and and anomalies such as temporary basal rates, exercise markers or sickness markers.
The benefit of having this data centrally located is that no matter which computer your at you will be able to find your information and use it to adjust your settings and requirements.
Another element of great reason for this pump is the CGM (Continual Glucose Monitor) sensor that talks directly to the pump and allows you to see what is happening with you BSL in real time. You can see the rise and drops and even can suspend the pump if it drops to low. The only frustration around these sensors is the cost. At this stage they are not subsidised by the government and not covered by any health insurance. At this stage it is out of reach for me and many many others and hopefully someone or some organisation will see the need to help cover these products to be available to all. These advancements make living longer easier and control a little less unpredictable.
I look back to the day I decided to move to an insulin pump and the day I decided it would be the best method of management for my daughter and there isn't a single regret. I look forward to knowing that there will be advancements from here.
Her best friend is her Medtronic insulin pump.
From the second day of diagnosis my daughter has accepted a little device that is attached to her via a needle cannula. It's somewhat familiar as she has always seen one on dad so I think it was a blessing in that sense but in every way she could have rejected as quickly as she accepted it.
She runs, jumps, tackles, sleeps, throws tantrums and is in general a normal 2 year old toddler with her pump. I will always teach her that there is nothing she can't do as long as she has drive to do it.
After 2.5 months of having T1D my daughter has had her first HbA1C and as the drums roll...... 6.1. I was proud of her and proud of my wife's efforts with managing not only T1 in general but also understanding the carbohydrate counting and the functions of the pump so quickly. On MDI people work for years to be able to see results like this, and yes I do understand that this result will fluctuate as my daughter goes through her developmental stages, but this is the best start I could have given her. The life on the Medtronic pump is essential to our success. It allows us to be able to give her what she needs using the inbuilt Bolus Wizard. As she is so small it allows us to give very small increments of insulin. It caters for different events and types of foods through the dual and square wave boluses. It takes away the need for slow acting insulin that in my opinion caused a lot of my severe hypo's.
Moving from MDI allowed me to put some flexibility back into what is a very regimented life. Naturally the body produces a base line of insulin to make sure that it stays level and then produces more once it realises that carbohydrates have been consumed and needs to be broken down into energy. Slow release insulin does this job but what it doesn't do is allow you to have varying levels depending on what your body requires at any part of the day and night. For example my body requires the most amount of insulin during the first part of the night while I sleep but then at 2am my requirements drop and so does my insulin intake. This allows my BSL's to stay stable instead of jumping up and down causing you to possibly walking the line of hypo in your sleep or running high.
Even though the pump isn't a cure and it isn't automatically adjusted making it as good as the information you put into it it is a management solution that gives a great amount of control each and every day and night.
Another element of the Medtronic pump that made me choose it over the others available in the market was the ability to read the clinical data. The pump connect via Bluetooth to a USB antenna which allows you to download the information to a central location (a cloud if you like) and with a single login you are able to look at days, weeks and months worth of data to find trends. You see the insulin given for bolusing, basal rates and corrections. You see the BSL readings entered into the pump and and anomalies such as temporary basal rates, exercise markers or sickness markers.
The benefit of having this data centrally located is that no matter which computer your at you will be able to find your information and use it to adjust your settings and requirements.
Another element of great reason for this pump is the CGM (Continual Glucose Monitor) sensor that talks directly to the pump and allows you to see what is happening with you BSL in real time. You can see the rise and drops and even can suspend the pump if it drops to low. The only frustration around these sensors is the cost. At this stage they are not subsidised by the government and not covered by any health insurance. At this stage it is out of reach for me and many many others and hopefully someone or some organisation will see the need to help cover these products to be available to all. These advancements make living longer easier and control a little less unpredictable.
I look back to the day I decided to move to an insulin pump and the day I decided it would be the best method of management for my daughter and there isn't a single regret. I look forward to knowing that there will be advancements from here.
Tuesday 12 November 2013
A change has come!
Today I see myself with a new challenge and opportunity. In the one day I have been contacted by the local news paper to talk about living with T1 for an article for world diabetes day and also received my invitation to speak at a diabetic educators conference in 2014 talking about diabetes and technology.
The topics and information begins rushing down to the tip of my tongue however for the article I need to make sure the important factors are covered.
1. A clear delineation and explanation of the differences between T1 and T2 is a must.
2. The work that goes into constant management by both the diabetic and the family is endless. It isn't a matter of set and forget it is constant change, calculation and adjustment.
3. Try to portray how strong we all are for what we are forced to deal with.
This is an opportunity to at least clear the messed up picture of what T1D is and how we live with it. I know it won't change the world however to have at least one person take a look and change their perspective would be an achievement. You would hope that a snow ball effect will hopefully start gaining momentum if enough of us stand up and start yelling and educating.
Now to the conference. This is a little more daunting. 30 mins, approx. 120 delegates and those delegates are the people we rely on to be in our support teams. I don't know what would be easier speaking to a hall of people who doesn't have a clue to educate or speaking to people who work in the industry. I suppose I will find out....
The technology advances have been amazing. Not only in management but also in regards to communication methods between T1 communities, doctors and educators or to the companies that put a large amount of money into research to make managing T1D as easy as possible.
The days of sitting in the waiting area of your specialist looking at the history of your BSL meter writing down all your readings and on the days when you couldn't give a dam you make up a few are over. BSL meters now connect to your pump, the cloud or to specially designing program's or apps on computers or even smart phones. Recording of my levels, even in the early days of a pump was not my strongest T1 practise. However firstly the availability to down load my optimum exceed meter to my laptop made things easier. It didn't add any smarts to the calculation but it did allow to start seeing trends and a clear picture for my support team to see what was happening. I then moved to the Bayer Contour meter that talked directly to my Medtronic Pump. When I first heard of this it was like Christmas. It would mean there was one less thing I had to worry about. This may seem petty however taking one thing out of this life is a big thing. It is like taking a process and automating it and as long as I don't run away from the meter as it is calculating then it will jump to my pump and give me suggestions if I am high or low.
I have been given another BSL meter that actually connects to my iPhone or iPod. To be able to activate its functions all you need to do is download a simple application that will take the information from each reading taken and start to graphically represent what is happening and what patterns are forming.
Now to the big change, the move from multiple daily injections to the insulin infusion pump. This was a life changing advancement. Yes you have something attached to you 24 hours a days, 7 days a week but to me it was more than worth it. It allowed me to put the required rates into my system when needed and put some normality back into life. No it wasn't a cure but it was definitely something that made my life easier and made me feel better inside and out.
From a management perspective the ability for the Medtronic pump to be downloaded to the cloud was a very attractive feature. It meant that as long as you remember your user name and password, not that easy now that everything is on line, you or your support team can see the latest results and patterns of what has been happening. It can be drilled down to months, weeks or days to find patterns. Along with the data that is sent from my BSL meter it now captures everything other than anomalies that life throws at you every now and again.
Away from the technology advances around management and delivery the biggest part technology plays in this life now is things just like this blog. The ability to reach others living the same life is easier than ever. For so long there was very little interaction but now you have the likes of Facebook, online forums, blogs, etc etc etc... You can open up your browser and read, respond or even ask a question that you know will get answers or suggestions from people who have similar experiences. This allows the gap between you and the next person living a similar life with the same challenges only seem like they are around the corner rather than feeling like there is no one else in the country let alone the world. This can be the one place that you can celebrate getting a perfect 5.5 BSL or the excitement of receiving you new pump consumables or even the place where you can rant or rave about someone telling you that we must have been over weight as a child to have diabetes, that their BSL's are out of control for no apparent reason and you just wish it wasn't there anymore. With all of these things unless you live this life the frustration and excitement cannot be understood however the support and understanding from across the world is not only welcome it is comforting to know there are others who understand and will listen.
If these are the changes that have happened in a relatively short period of time in our history then I look forward to what may come in the coming years as it can only get better from here.
The topics and information begins rushing down to the tip of my tongue however for the article I need to make sure the important factors are covered.
1. A clear delineation and explanation of the differences between T1 and T2 is a must.
2. The work that goes into constant management by both the diabetic and the family is endless. It isn't a matter of set and forget it is constant change, calculation and adjustment.
3. Try to portray how strong we all are for what we are forced to deal with.
This is an opportunity to at least clear the messed up picture of what T1D is and how we live with it. I know it won't change the world however to have at least one person take a look and change their perspective would be an achievement. You would hope that a snow ball effect will hopefully start gaining momentum if enough of us stand up and start yelling and educating.
Now to the conference. This is a little more daunting. 30 mins, approx. 120 delegates and those delegates are the people we rely on to be in our support teams. I don't know what would be easier speaking to a hall of people who doesn't have a clue to educate or speaking to people who work in the industry. I suppose I will find out....
The technology advances have been amazing. Not only in management but also in regards to communication methods between T1 communities, doctors and educators or to the companies that put a large amount of money into research to make managing T1D as easy as possible.
The days of sitting in the waiting area of your specialist looking at the history of your BSL meter writing down all your readings and on the days when you couldn't give a dam you make up a few are over. BSL meters now connect to your pump, the cloud or to specially designing program's or apps on computers or even smart phones. Recording of my levels, even in the early days of a pump was not my strongest T1 practise. However firstly the availability to down load my optimum exceed meter to my laptop made things easier. It didn't add any smarts to the calculation but it did allow to start seeing trends and a clear picture for my support team to see what was happening. I then moved to the Bayer Contour meter that talked directly to my Medtronic Pump. When I first heard of this it was like Christmas. It would mean there was one less thing I had to worry about. This may seem petty however taking one thing out of this life is a big thing. It is like taking a process and automating it and as long as I don't run away from the meter as it is calculating then it will jump to my pump and give me suggestions if I am high or low.
I have been given another BSL meter that actually connects to my iPhone or iPod. To be able to activate its functions all you need to do is download a simple application that will take the information from each reading taken and start to graphically represent what is happening and what patterns are forming.
Now to the big change, the move from multiple daily injections to the insulin infusion pump. This was a life changing advancement. Yes you have something attached to you 24 hours a days, 7 days a week but to me it was more than worth it. It allowed me to put the required rates into my system when needed and put some normality back into life. No it wasn't a cure but it was definitely something that made my life easier and made me feel better inside and out.
From a management perspective the ability for the Medtronic pump to be downloaded to the cloud was a very attractive feature. It meant that as long as you remember your user name and password, not that easy now that everything is on line, you or your support team can see the latest results and patterns of what has been happening. It can be drilled down to months, weeks or days to find patterns. Along with the data that is sent from my BSL meter it now captures everything other than anomalies that life throws at you every now and again.
Away from the technology advances around management and delivery the biggest part technology plays in this life now is things just like this blog. The ability to reach others living the same life is easier than ever. For so long there was very little interaction but now you have the likes of Facebook, online forums, blogs, etc etc etc... You can open up your browser and read, respond or even ask a question that you know will get answers or suggestions from people who have similar experiences. This allows the gap between you and the next person living a similar life with the same challenges only seem like they are around the corner rather than feeling like there is no one else in the country let alone the world. This can be the one place that you can celebrate getting a perfect 5.5 BSL or the excitement of receiving you new pump consumables or even the place where you can rant or rave about someone telling you that we must have been over weight as a child to have diabetes, that their BSL's are out of control for no apparent reason and you just wish it wasn't there anymore. With all of these things unless you live this life the frustration and excitement cannot be understood however the support and understanding from across the world is not only welcome it is comforting to know there are others who understand and will listen.
If these are the changes that have happened in a relatively short period of time in our history then I look forward to what may come in the coming years as it can only get better from here.
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