We are now over 3 weeks into the next chapter of my T1 life and the beginning of my daughters T1 life. To tell you the truth I am in complete amazement as to the resilience and adaptability of both my daughter and my wife. My wife has gone from knowing that I have T1 and some general rules all the way to knowing the intricacies of how to manage a 2 year old on a pump. She has gone from being scared of seeing needles to someone that is now giving them. My wife is am amazing woman and I thank the world that our daughter has her to help her through this journey. I am thankful also that she is a team with me battling to give our daughter the best T1 life possible.
My daughter, Shiloh, WOW. She amazes me on a Dailey basis. From cheering when her blood is accepter into her BSL machine to only spooking for mere seconds when we give her a set change for her pump. Absolutely amazing and I thank her for her bravery.
Even though she is only 2 she sees the importance of the pump. She accepts it on her waist and if anyone goes near or it is about to fall off because of rough housing with her sisters she calls out to either me or her mum "MY PUMP, MY PUMP" we look to her and usually find it either in her hand or about to fall or bungee as I like to call it. She allows us to calculate and enter the details because even though she won't know the details for some time she knows that once the pump went on she started to feel better. I would like to believe that it is her thanks for realising and making her feel the best she has in months.
A personal note to my daughter, because I hope that one day she will read this. "Shiloh you are an amazing child with strength, determination and percaverance. Life with T1 can be difficult but with help, knowledge and a greater partnership and family support we will survive and live like nothing can stop us. You are a precious child that will destroy anything or anyone that gets in you way. Your mother and I love you and thank ourselves everyday that you are who you are".
Over 3 weeks in and we are testing what works. Now that your sisters are home the activity has risen in the afternoons and we were experiencing lows so we adjusted your basal rate to settle you through you jumping, running and wrestling. During the night your levels were peaking then dropping suddenly so we have adjusted you sensitivity levels as the correction dose was a little to strong. All in all though you have better control than I do. I was amazed to look at the pump download to see on average no matter the time of day you are in range.
We know that there will be challenges along the way however this is the start I wanted and strive for.
Another night of broken sleep is ahead but good night to all and let's see what challenges T1D brings tomorrow.
Sunday 29 September 2013
Saturday 28 September 2013
The triple D's - Diabetes, Drinking and Depression
Diabetes: Drinking and Depression
Drinking, yes you can drink with diabetes. Do I drink a lot? No not at all but have I made stupid and dangerous mistakes that I regret now? Hell yes. Alcohol can have a strange effect on blood sugars so the stand calculation of carbohydrates is difficult. Alcohol in general has the ability to lower blood sugar levels and no that isn't a good reason to become a alcoholic. For me, and everyone may be different but this is the effects of the different types of alcohol -
Wine - red wine due to the tannins and skin composition effect my BSL greatly. It will shoot me up so the amount of insulin increasers where as white wine is a lot more subtle and I need to be careful with the alcohol lowering my BSL and the insulin I give.
Beer - I am not a real big beer drinker as I just don't like it however the introduction of low carb beer has helped a lot for the insulin intake. Beer you need the insulin.
Spirits - these have the biggest effect on lowering my BSL. Yes I have had straight spirits and that was not pretty however I was told very early on that to try and combat the drop have the spirit with a sugar mixer. For example a vodka and OJ. The OJ would counteract the vodka and hopefully level things off.
One of the most difficult things is though is trying to manage things while intoxicated. To remember to test, to remember the carb counting and to even remember insulin can become difficult. This then becomes a very dangerous situation. In my earlier years and just after I became legal to drink I was living with my older brother who decided to have a house warming party. My older brother is 6 years older so you can imagine the party. One of the other housemates that I had become friends with introduced me to the world of tequila shots..... One after the other they went down and slowly I even forgot that I had T1 eventually I must have had enough as my brother said he took me down to my room and put me onto my bed. I think I mentioned in an earlier post that my brothers never really needed to know much about my diabetes as I was the only living family with it and their lives were their own. However he must have felt something as he came and checked on me and freaked out to see that I was convulsing in my bed. He did the only thing he knew how to he called the ambulance and sent me off to hospital. I later found out that the party continued and luckily for me the problem I had was alcohol poisoning and my diabetes didn't take to much of a battering however I look back and think what if it did? What if I went hypo or DKA? The result of the evening could have been very different.
Now to the second D - depression. I am not a doctor so I use the term depression from people I have spoken to or documents I have read. I believe that all the processes and dudilagence that it takes to manage a life with T1 has an effect on all of us. Some call it diabetic burn out but I believe that it a form or the beginning of depression. There are days that I am tired, tired of the calculating, tired of the monitoring and tired of the life that is with T1. I push through however it would be much easier to just not. It would be easier to forget to watch what carbohydrates that go into my body, it would be easier to not test. Especially after a high BSL or a hypo the mind is effected to the point of sadness and distress. The mind becomes cloudy and it would be easy to just stop however the strength that we have to manage this disease is the strength that we draw upon to make sure we don't give up even for a second.
Some days I find it hard to give a dam about T1 and sometimes I find it hard to find the good side of life however the responsible side of me allows me to forget for hours and then pick things up again. There are times especially when on the roller coaster that it is hard to smile.
I sometimes day dream about allowing someone else to take the management away for just 1 day. I suppose it is a fantasy to live one day without any effect on my mind, body or soul. About 2 seconds after imagining these fantasies I pull my self back to reality and begin the process again. Some of us unfortunately the depression hits harder but we all have the strength to ensure success.
No matter what the critical disease is or even if it is mental illness we all must make it an acceptable conversation in our society because at the minute they advertise but the stigma attached to it is too much for a lot of people to even consider having that discussion.
Depression and T1D does mix but we have to be vigilant and talk. We have a a lot of challenges and this one should not be done alone.
Anything is possible but responsible actions are always needed to ensure we stay strong and healthy.
Drinking, yes you can drink with diabetes. Do I drink a lot? No not at all but have I made stupid and dangerous mistakes that I regret now? Hell yes. Alcohol can have a strange effect on blood sugars so the stand calculation of carbohydrates is difficult. Alcohol in general has the ability to lower blood sugar levels and no that isn't a good reason to become a alcoholic. For me, and everyone may be different but this is the effects of the different types of alcohol -
Wine - red wine due to the tannins and skin composition effect my BSL greatly. It will shoot me up so the amount of insulin increasers where as white wine is a lot more subtle and I need to be careful with the alcohol lowering my BSL and the insulin I give.
Beer - I am not a real big beer drinker as I just don't like it however the introduction of low carb beer has helped a lot for the insulin intake. Beer you need the insulin.
Spirits - these have the biggest effect on lowering my BSL. Yes I have had straight spirits and that was not pretty however I was told very early on that to try and combat the drop have the spirit with a sugar mixer. For example a vodka and OJ. The OJ would counteract the vodka and hopefully level things off.
One of the most difficult things is though is trying to manage things while intoxicated. To remember to test, to remember the carb counting and to even remember insulin can become difficult. This then becomes a very dangerous situation. In my earlier years and just after I became legal to drink I was living with my older brother who decided to have a house warming party. My older brother is 6 years older so you can imagine the party. One of the other housemates that I had become friends with introduced me to the world of tequila shots..... One after the other they went down and slowly I even forgot that I had T1 eventually I must have had enough as my brother said he took me down to my room and put me onto my bed. I think I mentioned in an earlier post that my brothers never really needed to know much about my diabetes as I was the only living family with it and their lives were their own. However he must have felt something as he came and checked on me and freaked out to see that I was convulsing in my bed. He did the only thing he knew how to he called the ambulance and sent me off to hospital. I later found out that the party continued and luckily for me the problem I had was alcohol poisoning and my diabetes didn't take to much of a battering however I look back and think what if it did? What if I went hypo or DKA? The result of the evening could have been very different.
Now to the second D - depression. I am not a doctor so I use the term depression from people I have spoken to or documents I have read. I believe that all the processes and dudilagence that it takes to manage a life with T1 has an effect on all of us. Some call it diabetic burn out but I believe that it a form or the beginning of depression. There are days that I am tired, tired of the calculating, tired of the monitoring and tired of the life that is with T1. I push through however it would be much easier to just not. It would be easier to forget to watch what carbohydrates that go into my body, it would be easier to not test. Especially after a high BSL or a hypo the mind is effected to the point of sadness and distress. The mind becomes cloudy and it would be easy to just stop however the strength that we have to manage this disease is the strength that we draw upon to make sure we don't give up even for a second.
Some days I find it hard to give a dam about T1 and sometimes I find it hard to find the good side of life however the responsible side of me allows me to forget for hours and then pick things up again. There are times especially when on the roller coaster that it is hard to smile.
I sometimes day dream about allowing someone else to take the management away for just 1 day. I suppose it is a fantasy to live one day without any effect on my mind, body or soul. About 2 seconds after imagining these fantasies I pull my self back to reality and begin the process again. Some of us unfortunately the depression hits harder but we all have the strength to ensure success.
No matter what the critical disease is or even if it is mental illness we all must make it an acceptable conversation in our society because at the minute they advertise but the stigma attached to it is too much for a lot of people to even consider having that discussion.
Depression and T1D does mix but we have to be vigilant and talk. We have a a lot of challenges and this one should not be done alone.
Anything is possible but responsible actions are always needed to ensure we stay strong and healthy.
Friday 27 September 2013
Ignorance is bliss but can be dangerous
Being in a minority group in the world has it's disadvantages and it challenges and as my heading states ignorance is bliss. Many people flow through life and unbeknownst to them they are ignorant of what can happen outside of their own life. They think they know all and that everyone else is the same. They can eat a whole wheat sandwich and would never think that that same thing could cause big problems to someone who is a ceiliac. They drink Coke and never think that with out consideration and calculation that same drink could send a T1 into DKA (Diabetic Ketoacidosis).
I was at a work function the other day, and I have had this before but this was the most recent, and we we actually playing golf for a charity day with work. It was close to 30 degrees and I had been drinking water after water. Everynow and again a drink cart would come by and I would ask the driver if they had any diet drinks? Most times they would apologise and say no diet drinks in here they might be in another cart but close to the last hole for the day I asked the same question and it was met with a comment that I had heard before but because I was becoming exhausted from the day of golf and managing my levels to ensure I stay out of the hypo range I answered abruptly. The statement was "why would you want diet? There is so much chemicals in that stuff it will kill you. You would be better off with the normal stuff." My response to that was short and sweet as I was not in the mood to educate today "The chemicals in the diet would kill me a lot slower than the sugar in the normal stuff!" I turned and went to tee off. Usually this would be met with some sort of education or even a comment about being a T1 but not today.
Other times and it is predominantly with drinks I have ordered at restaurants and fast food places. I place my order for a diet coke and when it comes, either as a mistake or a lack of care the first sip I take I test the water to make sure it is what they say. I once went to a movie theatre and ordered my diet coke and for some reason that day I was ridiculously thirsty and to tell you the truth the post mix drink was a bad mix however I got into the movie and just took long sips of the drink until it was nearly half gone. I continued drinking and about half way through the film I started to wonder why I was starting to feel my blood thicken and my over all body ache. I went through my head what I had done. BSL was good and I hadn't eaten anything so there should be no reason for it. I checked my pump and everything was working fine. There was no redness around the site indicating infection so I was stumped. Then it hit me, I took a careful sip of my drink, 3/4 empty drink, and asked my wife to do the same. The slight honk of the sugar crystals hit me and I thought wholly crap I just drank a ridiculousness amount of sugar and have not had any insulin. I quickly pulled out my tester and found that the damage had quickly shot me into the 20's and the explanation on why I felt so bad became clear. I corrected using my pump and waited for the levels to start dropping. Because of the amount of sugar a number of manual shots were needed to make sure I came down and this process took around 3 hours to get back into range. Not to mention the many hours of recovery from there.
As I said ignorance is bliss but in the wrong circumstance it is very dangerous. If that was to happen to my daughter and she wasn't able to tell me what had happened it could have taken her to DKA very quickly. I always watch when ever possible when post mix drinks are poured now and I have pulled up a half a dozen people who put regular in instead of diet. One day care for others will become important and ignorance will become less however you can lead a drink to water but you can't make them drink. The same is said of many people no matter how much you teach them unless they want to learn then your words go on deaf ears.
I was at a work function the other day, and I have had this before but this was the most recent, and we we actually playing golf for a charity day with work. It was close to 30 degrees and I had been drinking water after water. Everynow and again a drink cart would come by and I would ask the driver if they had any diet drinks? Most times they would apologise and say no diet drinks in here they might be in another cart but close to the last hole for the day I asked the same question and it was met with a comment that I had heard before but because I was becoming exhausted from the day of golf and managing my levels to ensure I stay out of the hypo range I answered abruptly. The statement was "why would you want diet? There is so much chemicals in that stuff it will kill you. You would be better off with the normal stuff." My response to that was short and sweet as I was not in the mood to educate today "The chemicals in the diet would kill me a lot slower than the sugar in the normal stuff!" I turned and went to tee off. Usually this would be met with some sort of education or even a comment about being a T1 but not today.
Other times and it is predominantly with drinks I have ordered at restaurants and fast food places. I place my order for a diet coke and when it comes, either as a mistake or a lack of care the first sip I take I test the water to make sure it is what they say. I once went to a movie theatre and ordered my diet coke and for some reason that day I was ridiculously thirsty and to tell you the truth the post mix drink was a bad mix however I got into the movie and just took long sips of the drink until it was nearly half gone. I continued drinking and about half way through the film I started to wonder why I was starting to feel my blood thicken and my over all body ache. I went through my head what I had done. BSL was good and I hadn't eaten anything so there should be no reason for it. I checked my pump and everything was working fine. There was no redness around the site indicating infection so I was stumped. Then it hit me, I took a careful sip of my drink, 3/4 empty drink, and asked my wife to do the same. The slight honk of the sugar crystals hit me and I thought wholly crap I just drank a ridiculousness amount of sugar and have not had any insulin. I quickly pulled out my tester and found that the damage had quickly shot me into the 20's and the explanation on why I felt so bad became clear. I corrected using my pump and waited for the levels to start dropping. Because of the amount of sugar a number of manual shots were needed to make sure I came down and this process took around 3 hours to get back into range. Not to mention the many hours of recovery from there.
As I said ignorance is bliss but in the wrong circumstance it is very dangerous. If that was to happen to my daughter and she wasn't able to tell me what had happened it could have taken her to DKA very quickly. I always watch when ever possible when post mix drinks are poured now and I have pulled up a half a dozen people who put regular in instead of diet. One day care for others will become important and ignorance will become less however you can lead a drink to water but you can't make them drink. The same is said of many people no matter how much you teach them unless they want to learn then your words go on deaf ears.
Thursday 26 September 2013
When you know no one is listening
You hear it all the time "Your as good as the effort you put in and from the help you receive from the professionals you engage to be on your team." You would think that the doctors and specialists would be some of the most important of all the players on the support team however I am hearing more and more around the frustration that T1's are feeling from specialists and doctors either not caring or not listening to the opinion and views of the people who live with this disease. For those who care and work hard you would know the ins and outs of what works for you and would be the best resource that the specialists have.
To me I try to learn from what I do and try to find out all I can about this disease. What I look for, and in some respects see it as a job interview where I am the employer, in a specialist is someone that will work with me and listen to what my views are. I have had the scenario in the past where I have had specialists who think they know best and because they have read a book and have been tested in it then they know absolutely everything there is to know about living with T1.
I will never say that I know everything and actually very far from it but to have a support person tell you it is their way and their way only only makes me stop listening and I loose respect for what their experience is.
I am not sure why doctors and specialists get this way but I presume that it could be because of the ratio of T1's they deal with compared to T2's and also the amount of people who take the management for granted and spend a long time in denial. That said there is still a lot of highly managed T1's who see the benefit and the drive to do the best they can.
I was lucky to find an endocrinologists who helped me understand everything I needed to and teach me how to manage things myself. I would attend appointments and instead of telling me what I had to do he would ask me what I thought the problem areas were and how I thought I would fix it. After listening we would go through the results and he would either approve of the amendments of offer slight suggestions as to what could be other reasons or what methods could be better off. I put it to this help that I have gotten through 23 years relatively un-scathed. There were times where I would miss appointments and sometimes go months with out visits and even though I would feel the guilt about not attending it was never judged or even mentioned. All he was there for was my health and well being and I felt he understood that even though T1 is a big part of life it is still only a part and it needs to fit in with life rather than the other way around.
With hesitant feelings I recently moved interstate and away from my endo and lucky to me I have found another, recently out of uni, who sees the work that has gone into my life and feels that he is also their for support and suggestions through consultation.
When no one is listening along this journey it is very difficult to listen to yourself and your body. The ability to have good control is difficult and the rate of diabetes burnout would be great. As I said in the start "your only as good ad the effort you put in and from the help you receive from the professionals you engage on your team" but sometimes it just takes some extra time and effort to find the right team.
To me I try to learn from what I do and try to find out all I can about this disease. What I look for, and in some respects see it as a job interview where I am the employer, in a specialist is someone that will work with me and listen to what my views are. I have had the scenario in the past where I have had specialists who think they know best and because they have read a book and have been tested in it then they know absolutely everything there is to know about living with T1.
I will never say that I know everything and actually very far from it but to have a support person tell you it is their way and their way only only makes me stop listening and I loose respect for what their experience is.
I am not sure why doctors and specialists get this way but I presume that it could be because of the ratio of T1's they deal with compared to T2's and also the amount of people who take the management for granted and spend a long time in denial. That said there is still a lot of highly managed T1's who see the benefit and the drive to do the best they can.
I was lucky to find an endocrinologists who helped me understand everything I needed to and teach me how to manage things myself. I would attend appointments and instead of telling me what I had to do he would ask me what I thought the problem areas were and how I thought I would fix it. After listening we would go through the results and he would either approve of the amendments of offer slight suggestions as to what could be other reasons or what methods could be better off. I put it to this help that I have gotten through 23 years relatively un-scathed. There were times where I would miss appointments and sometimes go months with out visits and even though I would feel the guilt about not attending it was never judged or even mentioned. All he was there for was my health and well being and I felt he understood that even though T1 is a big part of life it is still only a part and it needs to fit in with life rather than the other way around.
With hesitant feelings I recently moved interstate and away from my endo and lucky to me I have found another, recently out of uni, who sees the work that has gone into my life and feels that he is also their for support and suggestions through consultation.
When no one is listening along this journey it is very difficult to listen to yourself and your body. The ability to have good control is difficult and the rate of diabetes burnout would be great. As I said in the start "your only as good ad the effort you put in and from the help you receive from the professionals you engage on your team" but sometimes it just takes some extra time and effort to find the right team.
Monday 16 September 2013
Adding a licence or 2 to a life with T1D
I would have to say I have been lucky. Whether luck is something that happens or if it is something that is awarded for hard work then that comes down to personal opinion but I believe that the work you put in will determine what is returned.
Before getting my learner a permit I was freaked out. I had heard all the horror stories including T1D's can't drive, limited licence possibilities and continual review just to keep the licence were just some. However I went to the 2 places where I was going to get the answer for sure, my doctor and the road authority VicRoads. What I found out not only surprised me but put my fears to rest. Yes T1D's can drive and drive unrestricted however it would take good management and a note on a licence indicating that there is a medical condition. The other thing that needed to happen was to have a medical report completed by my doctor. The report would look at the overall control. If you are neglectful and have a lot of highs and a lot of hypo's then the ability to be allowed to drive is diminished. This isn't the only condition or situation where this happens I had a conversation with my Nan just recently where she was recounting that to be able to keep her licence she only now (over 80 years of age) needed to have a yearly review to ensure she was capable. She was shocked to realise that even though I was no where near 80 years old I had been having similar reviews for the last 16 years and would continue for the rest of my life.
If the report isn't done in the required time or if you forget to do it then your licence is swiftly suspended until such time as the review is done. As I have my endocrinologist fill in my medical report it just so happened that the report was due and the was a lag time to be able to make an appointment I was in trouble. I had to contact the authority and explain to them the situation. Thinking that I was going to be walking until I could get my report done I was surprised that they gave me an extension until after the time I had my appointment booked in for. There is a reason why these measures are in place and as always it is because of the minority that the majority have to suffer.
One of the easiest thing I did though after having my car licence was to get my motorbike licence. Once again thinking that there could be some hurdles the was little more than a single question "was my car licence up to date?" To which the answer was "Yes" and I proceeded with the tests and practise exam and yes obtained my licence. I actually went a few years without a car at all but then I had kids so the fun had to stop.
I suppose as with anything with T1D it is daunting to know what could happen and what hoops you may have to jump through to do something however it should never let you stop trying. I have travelled, scuba dived, jumped out of aeroplanes, gone on numerous thrill seeking roller coasters and lived life in general. Not because I want to prove anything but because I want to live the best life possible and I will make my diabetes fit to my life and not have T1D dictate what I can or can't do.
Before getting my learner a permit I was freaked out. I had heard all the horror stories including T1D's can't drive, limited licence possibilities and continual review just to keep the licence were just some. However I went to the 2 places where I was going to get the answer for sure, my doctor and the road authority VicRoads. What I found out not only surprised me but put my fears to rest. Yes T1D's can drive and drive unrestricted however it would take good management and a note on a licence indicating that there is a medical condition. The other thing that needed to happen was to have a medical report completed by my doctor. The report would look at the overall control. If you are neglectful and have a lot of highs and a lot of hypo's then the ability to be allowed to drive is diminished. This isn't the only condition or situation where this happens I had a conversation with my Nan just recently where she was recounting that to be able to keep her licence she only now (over 80 years of age) needed to have a yearly review to ensure she was capable. She was shocked to realise that even though I was no where near 80 years old I had been having similar reviews for the last 16 years and would continue for the rest of my life.
If the report isn't done in the required time or if you forget to do it then your licence is swiftly suspended until such time as the review is done. As I have my endocrinologist fill in my medical report it just so happened that the report was due and the was a lag time to be able to make an appointment I was in trouble. I had to contact the authority and explain to them the situation. Thinking that I was going to be walking until I could get my report done I was surprised that they gave me an extension until after the time I had my appointment booked in for. There is a reason why these measures are in place and as always it is because of the minority that the majority have to suffer.
One of the easiest thing I did though after having my car licence was to get my motorbike licence. Once again thinking that there could be some hurdles the was little more than a single question "was my car licence up to date?" To which the answer was "Yes" and I proceeded with the tests and practise exam and yes obtained my licence. I actually went a few years without a car at all but then I had kids so the fun had to stop.
I suppose as with anything with T1D it is daunting to know what could happen and what hoops you may have to jump through to do something however it should never let you stop trying. I have travelled, scuba dived, jumped out of aeroplanes, gone on numerous thrill seeking roller coasters and lived life in general. Not because I want to prove anything but because I want to live the best life possible and I will make my diabetes fit to my life and not have T1D dictate what I can or can't do.
Saturday 7 September 2013
The one thing I never wanted to share or give away!
This was the day that horrified me for years. This was the day that I thought could not happen to me or my family. This was the day that nearly broke me. The day was the realisation and the subsequent diagnosis of my daughter to the world of T1D.
In my head I had thought it could be possible that because I was the only one in my greater family to have T1D then I was going to be the one that was going to live and die with the disease. The genetic component would be lost on me and it would not be shared or spread. I think now what an idiot. With everything I know how could I be so naive how could I not prepare for the day just in case.
Well in truth maybe all that I had done in the last 23 years was just a lead up to this day. The understanding of the ups and downs, the understanding of management of this disease and the what to do and the what not to do's. Maybe, just maybe, this moment had been laid out and all of my experience was meant to be able to help my daughter be the best she possibly can be.
I am writing this post sitting in a reclining chair that will double as my bed tonight in an unknown n hospital next to my 2 year old daughter who sleeps not knowing or understanding that I will be looking over her tonight giving her 2 hourly BSL tests to ensure she is kept in a safe range, to ensure that I protect my beautiful girl no matter what.
2 days ago the day was like a lot in Queensland, nice weather and a nice outlook for the week to come. I didn't start the day well as my pump had disconnected itself in the middle of the night and I was as high as a kite and felt like shit however after correcting my sugars and recovering my wife,sister in-law and baby daughter headed to the shops to get dinner. My wife had mentioned,and I had noticed, that over the last couple of weeks our 2 year old looked a bit off but we put it down to a virus and believed it would pass and she would improve. While going through the shops my daughter persuaded us to give her some sweet treats just to make sure she didn't have a tantrum (that is how we will think of it).
The trip progressed but what was becoming extremely evident was that my daughter was desperately thirsty for water and was in need of a nappy change every 30 minutes to an hour. This started the thoughts that I never wanted to have or believe I was having. The amount of times in my own head I said to myself that "don't be stupid she has a virus and nothing is wrong" was ridiculous cause I knew deep down what was coming but I was not going to admit it to anyone. We went through 2 bottles of water in a matter of minutes and the same in nappies.
I looked up and my eyes met with my wife's and the look said a million things we were both thinking but one stood out "it couldn't be, not our little girl". I had my BSL meter with me and we bit the bullet and tried to test her blood just to reassure ourselves that this virus was just that however if you can imagine trying to prick a 2 year olds finger in the middle of the public while she was screaming it just wasn't going to happen so we abandoned the idea and finished what we needed to do.
We headed home and after arriving and changing my daughters nappy again I observed her stars up and pee again straight away but this wasn't anything close to normal. This filled an empty nappy and caused it to leak onto the ground. My next move was to grab my BSL tester and have my wife hold her ASAP.
With a screaming gaunt looking child I prepped the tester and found the finger. I reduced the depth of the device that would stab a hole to release the required blood. I positioned it on the edge of the pad of the middle finger and prayed that this wasn't going to be what I knew it was. I pressed the button to further screaming as I squeezed to get enough blood. I drew the blood onto the test strip and waited for what felt like an hour but was in fact 5 seconds for the results - HI. No I am not saying hello that was the reading. On the BSL meters there is a range that they go to and anything above that range is shown as HI which basically means that her BSL was higher than 26. I still didn't want to believe it so asked my wife to wash her hands as I reset for another test. The process was much the same. The screaming was louder and the struggling was fierce as the element of surprise was gone and gone forever. If only she knew that what was happening was going to be the start of the rest of her life. The result was the same - HI.
The disbelief continued even though every fibre in me knew what was happening. I told my wife we needed professional diagnosis as my tester could still be wrong. After a visit to the GP (with another test), a call to my long standing endocrinologist in Victoria we moved the older daughters to the next door neighbours and we rushed to the Royal Children's Hospital in Brisbane. The fear and guilt had set in on that trip and the tears started flowing from both myself and my wife. My wife cause her baby had gotten a life long disease that will see her need control, needles and the help. Me cause the only thing that would flow into my mind was that this was my fault. That if my wife had a child with someone else then this would not have happened. That my worst nightmare was in progress and this was the start of a never ending roller coaster with very high highs and very low lows.
We arrived at the emergency department and informed them of the systems and the test results and within 30 seconds we were moved in to the consultation area and the fun began.
To get the tests started the doctors had to take blood so a cannula was to be out into my daughters hand. If testing her finger wasn't taken well you can imagine the yelling and screaming of a large needle being put into a vein with another person holding the arm still and me gently holding her in place by lying over the top of her and trying to reassure her it was going to be ok. I still have the scratches healing from this event which would show you how rough this was.
The cannula was out in and her arm was put on a board and bandaged to ensure that she couldn't touch the line. The time had come to see her have her first injections. One in each leg at the same time. One to get the sugar levels down short term and another to keep them down over the coming hours. Knowing how to give myself needles I watch in horror as they aimed at each leg. The older of the 2 nurses held the leg still however the younger of the 2 allowed for movement. I heard the count down "1, 2, 3" and the needles struck. Screaming continued and as my daughter clenched the younger of the nurses lost grip if the leg and the syringe and to my horror the needle flayed around in the leg. The insulis were givens and the screaming started to subside. Now as it was now around 9pm and my daughter was already exhausted from her body fighting the lack of insulin but now she was completely wrecked. The insulin started to work and it was amazing to see my baby come back to us. The grumpiness started to subside and our beautiful baby started to look happier in herself.
It would be information we found out later but at the time of getting to the hospital my daughters BSL was 70. Keeping in mind that a normal BSL should be between 5 and 6 hers was extremely high and at a dangerous level. Another very interesting fact was that the highest I have ever been is 56. At that time I was vomiting and almost in a coma. The ability for a child's body to cope and adapt is truly inspiring.
I watched my daughter all that night not wanting to allow her to be out of my sight and not wanting to allow anything to happen to her. What I then promised to her was to help her understand this disease and the effects it will have on her. I promised that I would never leave her feeling that she is alone and that no matter what I would find a better way of living for her. My 23 years was going to be the basis of knowledge that was going to give her a path when old enough to understand. Yes she would make mistakes but I will always be there if she wanted me to pick her up.
The next day came and the time I had been waiting for was upon me. She was due her next 2 injections and it was time for me to administer them. The 30,000 odd needles had prepared me to not freak out however it is very different doing it on a toddler compared to a teenager or adult. It turns out that after the next injection that was done by my wife, number 1 for her, she has the more gentle touch.
The next 3 days in hospital were about education. This was some what sped up by the fact I already knew most of it but my wife needed to go through the basics and I was happy to help out where ever possible. It was decided very quickly by my wife and I that the best management method was going to be a pump. With our daughter being very picky when it comes to food we would not be able to ensure she would eat the required carbs if we were doing MDI. We knew that the pump was going to be interesting to see how our daughter would accept it but we also knew that she would be young enough to not know any different very soon.
We chose the same pump as the one that I use to help with the learning curve. The adoption from my daughter to having a device attached to her permanently was second to none. After the insertion and the initial shock screams it only took 2 to 3 minutes to go back to playing and being herself. Later that night when it was just her and I in the hospital she found the pump, and seeing as I had locked it and that I wanted her to know what it was, I let her look and press the buttons. At that time I pulled my pump out and let her compare them. Holding both she pressed them together and made a kissing noise. It was then that I knew she was going to be ok with this as she already knew it of it in her life. To myself I thought that this little girl would be my mini me.
In my head I had thought it could be possible that because I was the only one in my greater family to have T1D then I was going to be the one that was going to live and die with the disease. The genetic component would be lost on me and it would not be shared or spread. I think now what an idiot. With everything I know how could I be so naive how could I not prepare for the day just in case.
Well in truth maybe all that I had done in the last 23 years was just a lead up to this day. The understanding of the ups and downs, the understanding of management of this disease and the what to do and the what not to do's. Maybe, just maybe, this moment had been laid out and all of my experience was meant to be able to help my daughter be the best she possibly can be.
I am writing this post sitting in a reclining chair that will double as my bed tonight in an unknown n hospital next to my 2 year old daughter who sleeps not knowing or understanding that I will be looking over her tonight giving her 2 hourly BSL tests to ensure she is kept in a safe range, to ensure that I protect my beautiful girl no matter what.
2 days ago the day was like a lot in Queensland, nice weather and a nice outlook for the week to come. I didn't start the day well as my pump had disconnected itself in the middle of the night and I was as high as a kite and felt like shit however after correcting my sugars and recovering my wife,sister in-law and baby daughter headed to the shops to get dinner. My wife had mentioned,and I had noticed, that over the last couple of weeks our 2 year old looked a bit off but we put it down to a virus and believed it would pass and she would improve. While going through the shops my daughter persuaded us to give her some sweet treats just to make sure she didn't have a tantrum (that is how we will think of it).
The trip progressed but what was becoming extremely evident was that my daughter was desperately thirsty for water and was in need of a nappy change every 30 minutes to an hour. This started the thoughts that I never wanted to have or believe I was having. The amount of times in my own head I said to myself that "don't be stupid she has a virus and nothing is wrong" was ridiculous cause I knew deep down what was coming but I was not going to admit it to anyone. We went through 2 bottles of water in a matter of minutes and the same in nappies.
I looked up and my eyes met with my wife's and the look said a million things we were both thinking but one stood out "it couldn't be, not our little girl". I had my BSL meter with me and we bit the bullet and tried to test her blood just to reassure ourselves that this virus was just that however if you can imagine trying to prick a 2 year olds finger in the middle of the public while she was screaming it just wasn't going to happen so we abandoned the idea and finished what we needed to do.
We headed home and after arriving and changing my daughters nappy again I observed her stars up and pee again straight away but this wasn't anything close to normal. This filled an empty nappy and caused it to leak onto the ground. My next move was to grab my BSL tester and have my wife hold her ASAP.
With a screaming gaunt looking child I prepped the tester and found the finger. I reduced the depth of the device that would stab a hole to release the required blood. I positioned it on the edge of the pad of the middle finger and prayed that this wasn't going to be what I knew it was. I pressed the button to further screaming as I squeezed to get enough blood. I drew the blood onto the test strip and waited for what felt like an hour but was in fact 5 seconds for the results - HI. No I am not saying hello that was the reading. On the BSL meters there is a range that they go to and anything above that range is shown as HI which basically means that her BSL was higher than 26. I still didn't want to believe it so asked my wife to wash her hands as I reset for another test. The process was much the same. The screaming was louder and the struggling was fierce as the element of surprise was gone and gone forever. If only she knew that what was happening was going to be the start of the rest of her life. The result was the same - HI.
The disbelief continued even though every fibre in me knew what was happening. I told my wife we needed professional diagnosis as my tester could still be wrong. After a visit to the GP (with another test), a call to my long standing endocrinologist in Victoria we moved the older daughters to the next door neighbours and we rushed to the Royal Children's Hospital in Brisbane. The fear and guilt had set in on that trip and the tears started flowing from both myself and my wife. My wife cause her baby had gotten a life long disease that will see her need control, needles and the help. Me cause the only thing that would flow into my mind was that this was my fault. That if my wife had a child with someone else then this would not have happened. That my worst nightmare was in progress and this was the start of a never ending roller coaster with very high highs and very low lows.
We arrived at the emergency department and informed them of the systems and the test results and within 30 seconds we were moved in to the consultation area and the fun began.
To get the tests started the doctors had to take blood so a cannula was to be out into my daughters hand. If testing her finger wasn't taken well you can imagine the yelling and screaming of a large needle being put into a vein with another person holding the arm still and me gently holding her in place by lying over the top of her and trying to reassure her it was going to be ok. I still have the scratches healing from this event which would show you how rough this was.
The cannula was out in and her arm was put on a board and bandaged to ensure that she couldn't touch the line. The time had come to see her have her first injections. One in each leg at the same time. One to get the sugar levels down short term and another to keep them down over the coming hours. Knowing how to give myself needles I watch in horror as they aimed at each leg. The older of the 2 nurses held the leg still however the younger of the 2 allowed for movement. I heard the count down "1, 2, 3" and the needles struck. Screaming continued and as my daughter clenched the younger of the nurses lost grip if the leg and the syringe and to my horror the needle flayed around in the leg. The insulis were givens and the screaming started to subside. Now as it was now around 9pm and my daughter was already exhausted from her body fighting the lack of insulin but now she was completely wrecked. The insulin started to work and it was amazing to see my baby come back to us. The grumpiness started to subside and our beautiful baby started to look happier in herself.
It would be information we found out later but at the time of getting to the hospital my daughters BSL was 70. Keeping in mind that a normal BSL should be between 5 and 6 hers was extremely high and at a dangerous level. Another very interesting fact was that the highest I have ever been is 56. At that time I was vomiting and almost in a coma. The ability for a child's body to cope and adapt is truly inspiring.
I watched my daughter all that night not wanting to allow her to be out of my sight and not wanting to allow anything to happen to her. What I then promised to her was to help her understand this disease and the effects it will have on her. I promised that I would never leave her feeling that she is alone and that no matter what I would find a better way of living for her. My 23 years was going to be the basis of knowledge that was going to give her a path when old enough to understand. Yes she would make mistakes but I will always be there if she wanted me to pick her up.
The next day came and the time I had been waiting for was upon me. She was due her next 2 injections and it was time for me to administer them. The 30,000 odd needles had prepared me to not freak out however it is very different doing it on a toddler compared to a teenager or adult. It turns out that after the next injection that was done by my wife, number 1 for her, she has the more gentle touch.
The next 3 days in hospital were about education. This was some what sped up by the fact I already knew most of it but my wife needed to go through the basics and I was happy to help out where ever possible. It was decided very quickly by my wife and I that the best management method was going to be a pump. With our daughter being very picky when it comes to food we would not be able to ensure she would eat the required carbs if we were doing MDI. We knew that the pump was going to be interesting to see how our daughter would accept it but we also knew that she would be young enough to not know any different very soon.
We chose the same pump as the one that I use to help with the learning curve. The adoption from my daughter to having a device attached to her permanently was second to none. After the insertion and the initial shock screams it only took 2 to 3 minutes to go back to playing and being herself. Later that night when it was just her and I in the hospital she found the pump, and seeing as I had locked it and that I wanted her to know what it was, I let her look and press the buttons. At that time I pulled my pump out and let her compare them. Holding both she pressed them together and made a kissing noise. It was then that I knew she was going to be ok with this as she already knew it of it in her life. To myself I thought that this little girl would be my mini me.
Thursday 5 September 2013
Under the pump!
Now the little device many think is a iPod, part of my phone, a pacemaker or even a pager. Now when I get the question about if it is a pager I have to think to myself, and sometimes say to the individual, how old and out of touch with reality do I look and since when is a pager hard wired? One of the funniest is the iPod though because even if they have seen where my pump connects to me they think I am hard core because I have bypassed the headphones and gone straight to the middle ear. As funny as it sounds some people actually believe that for a split second and then they realise how crazy that sounds.
Anyway this device that I obtained in 2006 was the device that would change my life from being a constant battle, full of pain, blood, needles and anxiety. To a life of constant management, occasional pain, less needles, still plenty of blood and yes anxiety but it gave me my freedom back. It allowed me to feel slightly normal again. It allowed me to be able to sleep in, it allowed me to miss a meal if I wasn't feeling well, it allowed me to have a salad and only a salad if I wanted and it allowed me to feel good. The device was my insulin infusion pump.
This pump was to take the 5 injections per day that I was having and change it to 1 injection every 3 days. After 16 years of 5 injections a day I was getting tired and to tell you the truth the regime wasn't working. Every night my BSL would go haywire and protaphane was no longer giving me the control I wanted and needed.
12 months earlier I had investigated to find out what process had to be taken to be able to get one of these pumps. I found out that they cost between 10,000 to 12,000 thousand dollars and had to be replaced every 4 years as the warranty period was just that 4 years and you could not extend it. Understanding that the insulin pump becomes you literal lifeline without warranty if it breaks or malfunctions then there better be a good plan to manage things and quick to be implemented.
Now seeing that price tag I first thought "not a hope in hell" there would be no way that I could afford it now let alone every 4 years. I then was told that the pump companies along with the government had managed to get them covered by private health insurance for the full amount. Seeing as it was a per existing illness and there was no way around it once the health insurance was obtained I had to wait 12 months to use it. It would be a long 12 months as I needed a change and had read up on the possibilities with the pump.
The day came where I went to the endocrinologist and his educator to pick the pump. There were 3 or 4 on the market but I was told the one with the proven track record, reliability and the manageability was the Medtronic. I am sure the other pump now have caught up but I like what I know and the Medtronic does everything I need. The order was placed and from here all that stood between me and flexibility was a trip to a dietitian, and a call from Medtronic to tell me my pump had arrived.
The next learning curve was set around my visit to the dietitian and carbohydrate counting. I knew of the DAFNE program which was calculating your insulin dose from the carbohydrates that are to be eaten but I had never been pushed down that track and to tell you the truth I didn't want the complication of addition process and calculations into an already busy and hectic life. But to go onto the pump it was exactly what had to happen however all my calculations and ratio's, instead of being calculated and stored in my head would be done in my pump.
The day I had been waiting for for over 12 months had arrived and all that stood in my way was a 1/2 day training session on how to operate the pump and warnings that this was not a cure but only a method of management.
Now everything I have written about this device has been what was going to change my life for the good but as with all things in this modern world there are always warnings and to tell you the truth management of T1D on a pump can be more difficult and even more dangerous cause being only on a short acting insulin things can change and change rapidly if your not paying attention.
This has never been as evident as very recently. For some reason I must have been overly active in my sleep as during the night my pump line disconnected. It must have happened in the early hours of the morning as by the time I woke up around 7am my world have may as well stopped. My blood felt like mud flowing through veins. The pain stretching from the top most hair on my head all the way to my little toe and everywhere in between was intense and I just wanted to yell and scream for it to stop. The nausea was also all encompassing, on the verge of dry reaching I knew there was a big problem. My first thing to do was to check to see if my pump was working and as I reached down to grab it I noticed that there was no line cloning from my belly. The connection site was there but the line was hanging from the pump. I quickly reconnected and went to see what damage had been done. As I hobbled, trying not to vomit, to the other end of the house to get my Blood Glucose machine I knew my BSL was going to be high.
I was right my BSL was 30.7. My pain and sickness was justified. My body was yelling at me to fix the problem or it was going to go into protest mode and send me to hospital with ketoacidosis. Basically sugar and ketone poisoning. Ketones are created in your liver and is an acid that is created when your body burns its own fat. When the body doesn't have enough insulin it can't get glucose from the blood into the bodies cells to use for energy and instead will begin to burn fat. When the body is burning too much fat the acid is produced and hence ketones. This may seem like a cool way to loose unwanted fat but I tell you what my health is way to important to have this acid running through my body causing irreparable damage and if that isn't enough it makes you feel like shit inside and out.
My pump was in and I was under no unrealistic impression that this was going to be easy but I was confident that it was going to make my life better.
The idea of having to now count the carbohydrates I was eating seemed daunting in the beginning however that quickly subsided when I made sure I saw it the same way that I saw my control. To always do my best and know that there will be times when I don't get it right. I needed to make sure I learnt from my miscalculations and continue to strive to do the best I could....
This may seem irresponsible however I wanted to test out my new companion so the fist thing I ate and bolused for was a small mars bar. I knew the carb count and I knew the effect it would usually have. I did my BSL and entered the carbs into my machine and pressed go. It was a happy moment as I continued to check my BSL every 30 mins for the next 2 hours cause yes it did rise due to the sugar but it also went back to the my original BSL after everything was done. I was amazed and I was hooked.
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