Tip and Tricks – #DBlogWeek Day 5

Our topic today is Tips and Tricks.  Let’s round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There’s always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.)

I’ve been racking my brain trying to find some tips or tricks for you and I’ve been struggling! When I find something that works it becomes so much part of my routine that I completely forget that others may not do the same. So I have fallen back on some of last years videos, during which I shared some of my storage methods.

The first is about my blood kit, what I use for one and what I keep in it. I wont drone on about it because you can watch it here and click here to get the link to the Smiggle store where I got my bag (for some reason it’s coming up with the Australian store but you can order to NZ from it (and probably from other places too.))

The second is all about how I store my diabetes resources. Now that I am on the pump I seem to have quadrupled in resources! But don’t worry if you are not pumping as about half of the video still applies to you 😉 Here is the link to the video and here is the link to my original blog post which has links to where you can purchase all the resources etc 😉

The last and final ‘tip’ I have is how to fix your Animas Vibe pump clip. The pumps come with a metal clip that slides onto the back of the pump but with everyday wear the screw that holds it all together becomes loose and often joggles out completely or makes the clip so loose it swings about. Here is my video on how to fix it yourself 🙂

Hopefully one of these videos has contained something useful for you today and as always if you have any questions please comment below or you can find me on the following social medias.

Twitter

FaceBook

YouTube

And IG – MyPinkPancreas

x Hope

 

The Healthcare Experience – #DBlogWeek Day 4

Our topic today is The Healthcare Experience.  Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Before I say anything here I would like to draw your attention to the fact that all of my diabetes care is government funded in New Zealand and because of this there are a great deal of factors that are beyond the control of HCP’s and as a result are not their fault. 

I’ll start with what frustrates me about the healthcare system at present with it’s treatment of T1D because I want to finish on a high 😉

There are only two things that I can really pick on with T1D management and in the grand scheme of things, when compared to some other countries these are not worth complaining about.

The first is that resources for T1D management are limited and controlled by the government. As i’m sure we have all seen on other blogs, Facebook pages and websites there is a plethora of resources available to assist with T1D management but in New Zealand only ones that the Government approves of are allowed to be sold within the country and only one brand of blood glucose meter and test strips are funded, there is a constant battle between people having to use these resources daily and the Government as often these resources are not appropriate or of good enough quality/reliability. When living with a chronic illness I believe it is really important to acknowledge that every individual is just that, an individual, the way that they choose to live their lives is different, what they face each day is different and because of this different management techniques suit different people. There is not, has not been and never will be a one size fits all management strategy for people with T1D and I really would like to see the Government acknowledge this and make moves to allow and fund more management resources within the country.

The second is a mixture of the training provided to staff members and access to trained staff members. I think that as someone with a chronic illness you become an expert on it, lets face it you live with it 24/7, you deal with the highs and lows and manage every aspect, often unassisted so you have a great deal more time to gain experience and knowledge because of this I feel the need to point out that HCP’s do not (on the whole) get this experience and therefore I don’t feel I can judge them too harshly. BUT I have noticed that there is this feeling of ‘I’ve been trained about this so I know, now do what I say’ that appears to come from some medical staff (to be fair these staff members are the ones working generically not specifically in T1D) but it can be really affronting to be told that you basically don’t know anything and should just do what you are told. Often what is suggested is very old hat or basic and if you are like me you are quite a bit more advanced and do actually have an understanding on a more biological level. I would really like to see more compassion and acknowledgement that I, as a patient may actually have some knowledge on the topic and my illness can be discussed WITH me instead of just IN FRONT of me and a slightly less ‘high and mighty’ approach from HCP’s (I must stress here that most of the people I have experienced this kind of attitude with have been younger new grads and I do wonder if it is just a younger person thing?) I am someone who does not reach out for medical help with their T1D until they really have to, if I have scrapped the bottom of the barrel and there is no where left to go then I will look for help but all too often I cannot get the help and feel left hanging 😦 it’s a horrible feeling and situation to be in and makes me feel really vulnerable. Unfortunately it is all down to funding, there is not enough staff to  have an expert available 24/7, the staff do try but things have to be prioritized and if the list is long things can get lost.

Overall, for me personally, I don’t see my endocrinologist any more than once a year as her understanding of pumps is not enough to assist in my management. I see one nurse every 3months who I have an amazing relationship with and cannot speak highly enough of! I have had her since I was 10 and admittedly have not always had the best relationship with her but as I have grown up this has improved. My only complaint is that she is so busy that I cannot get hold of her easily when I need to but this is not her fault, it is due to staffing and funding.

Last of all, what am I doing about all of this. I feel that it is all very well to sit and tell you what I don’t like and how hard I have it but I don’t really feel I have the right to unless I am actively trying to change it. So I became a ‘Friend of the Medical School’ I go in whenever I am called and attend lectures or small classes on one of the various things that is wrong with me and the students quiz, poke, prod and examine me. We talk about how my conditions effect my life, my health, my lifestyle. The resources I use, how they help and what would be more helpful if it were available. It provides an opportunity for the students to view T1D and other conditions through a different lens and hopefully allows them to come away with a rounder view on the condition, rather than just viewing it through a purely medical lens. I get asked questions that I had never thought of and I get to share information that I feel is important for these young Doctors to know before they begin their practice. They hopefully come away with more knowledge and I come away with a feeling that i have done some good in enabling them to have more understanding about various conditions and making them think more before jumping to conclusions. It allows me to feel like my conditions are being used for good and it is not all just bad my having them.

All in all I am extremely lucky with the medical treatment and resources available to me, yes there could be vast improvements but I am alive and have a very reasonable quality of life because of these treatments and resources, which I am very grateful for.

 

Hope

Language and Diabetes-#DBlog Week Day 3

Our topic today is Language and Diabetes.  There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

Hmmm, I feel like this topic is one that is locked, loaded and ready to explode so I am approaching it very warily. Please note that what I say within this blog (as with most of them) is my own personal experience and feelings/thoughts, everyone is different, you do not have to share in my opinions but if you do that’s great.

There are many quotes available on how important our words are, the impact they have and how they can cut deeper than any sword and do more damage than a beating. I’m sure that we have all experienced the full impact of cruelly directed words at one point or another, I know that I have been in tears over words said about my diabetes or management online or in person, I have felt made to feel bad about the way in which I choose to manage my diabetes or made to feel that because I don’t follow diets or regimes my bad blood sugars are my fault and to be blunt, it sucks. We can all say that things people say don’t affect us but deep down words all do something.

I try to be very careful with how I phrase things and put my opinions when I blog, make videos and am commenting on others things online but I’m sure that even when keeping this in mind I have said some things that have been misinterpreted or understood.

It can be very hard to share opinions online, I think that as humans when someone doesn’t share our opinion and states a different one we feel attacked and ganged up on, even if this is not the case. I have noted though that there does seem to be a ‘my way or the highway’ mentality in many DOC’s and it is dividing the communities. As we all know there are many different management techniques for T1D and everyone seems to opt for a different method or multiple methods that they feel work best for their body, lifestyle and results they want. Personally I try to eat a balanced diet (I carb count to the gram), I walk a lot, I bolus 15-20mins before meals and test 12 times a day and once in a blue moon I eat junk food and watch movies all evening, this combination works for me but i totally understand that it’s not for everyone and if people want to do it another way I am supportive of that but if they want to know how I do it I’m happy to share. I understand that not everyone’s bodies, metabolisms, lifestyles, beliefs and capabilities are the same as me and because of that they do what they believe works best for them and I will not tear that down because I am not in their shoes.

There is only one terminology or name that I struggle with in the diabetes world and that is when people refer to me as a diabetic. I know that absolutely nothing bad is meant by it but I struggle with it because I feel labelled. Once someone refers to me or introduces me as a diabetic I feel like everyone makes assumptions and decisions based on what they know about diabetes. I feel that they don’t want to get to know ‘me’ after knowing that because I become ‘Hope the diabetic’ not Hope who spins and knits and walks and bikes and paints, none of that matters because I’m diabetic and that’s all there is to me. I know there is never this intention by people but this is what I have experienced and I will always prefer to be Hope who is creative, loves the outdoors, music and taking photos and just happens to live with diabetes.

Whenever talking diabetes, be it online, in person, wherever just remember when commenting on others thoughts and when receiving comments yourself that no one is an exact replica of you and what you hold close others may not and vice versa.

Hope

Message Monday-#DBlog Week Day 1

“Today’s topic is Message Monday.  Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)” Karen Grafeo (Bitter-Sweet Diabetes).

What I’m taking from this one is why do I Dblog? The answer to this is going to have a few sections so I am afraid you are going to have to bear with me for a bit 😉

Here is my first video (I’m pretty sure it came before the blog) explaining what I set out to do. In a bit over a year since I think that the bones have stayed the same but had been significantly added to as I’ve grown. So here is what I am all about now.

First and foremost, it helps me. It helps me to process things that happen with my diabetes, to reach out for help when I need it, to make connections with others going through the same thing or who have been there, done that and can offer me advice and most importantly it makes me feel less alone. There is no community based group for people with T1D in my area so I have grown up not knowing anyone else who was living with the same thing and as a result felt very alone and isolated. Being able to connect with other people (even if I never see them face to face) takes away this feeling of being alone and gives me reassurance that I am not the only one in the world facing this and that there are solutions and other methods that I have not tried.

Second of all when I discovered Dblogs it was amazing, a whole new world opened up for me, suddenly I was not alone and others had gone through or were going through similar things but the only problem was they were all American and the American health system is VERY different to the New Zealand one (the terminology is also different but that is less of an issue). I was discovering all of these management methods and equipment that looked incredible but was not available to me and it was really frustrating. I had no knowledge about the New Zealand health system and what was available and what popular management techniques were. I felt like I was flying blind, I kept asking my team for things that they had never heard of or that weren’t available and it became very confusing. I wanted to provide something for people in New Zealand (and other places if they wanted) that explained what WAS available here and using language that was familiar.

Thirdly I wanted to provide a ‘big girl with T1D’ for younger girls. I never had this growing up and I really feel that it would’ve helped me to see someone older who despite all the T1D stuff was getting on and doing things. I feel I may have felt a bit more like I could do things rather than oh but I have T1D so I can’t.

Okay I forgot one…fourthly, I wanted to provide a place that was open honest and real about T1D. I read so many really inspiring Dblogs where people do incredible things and I get all powered up, ready to take on the world and then I can barely make it to lunch time because I have a series of lows overnight and wake up really high. I applaud those who are able to not let T1D affect their lives in any way but for those of us who it provides a daily struggle that sometimes feels far too much I wanted to provide reassurance that it is not just them and for those who have no concept of what T1D is I wanted to provide a glimce of what it can be like (note I use can because everyone’s experiences are so different).

And finally (I know I forgot two!) I wanted to help. I know how horrible it is to feel alone, like no one gets it, that you work your butt off but everything still goes wrong, and I don;t want anyone to ever feel that they are alone in it all or that everyone else is perfect. I want to help educate those that have never heard about diabetes, to give some insight into what diabetes means, how it can be managed, what it means to live with it and to hopefully remove some of the stigma and myths surrounding it.

Dblogging has become part of my T1D care and I am really thankful to be able to share my experiences, thoughts, concerns, failures and successes with an amazing online community while building some rock solid friendships along the way. Hopefully people read my blog and it helps them out in some way but if no one reads it thats okay because it does my soul good to write it and process it.

Putting a Face to the Name (the High Blood Sugar Demon)

I was recently asked if  would like to submit a blog post to Diabetes Daily Grind to be published on their site. I was over the moon!!! But rather stumped as to what to write about. Then I had a really bad high and I knew what to write about. What it is like to experience a high blood sugar.

Here is the blog post.

arguments

Please let me know what you think, do you experience highs differently? How do you handle the emotions that come with it?

Make sure you check out Diabetes Daily Grinds site too and some of the other fantastic blog entries 😀

Hope

 

Relinquishing Control-Blood Sugar Checks

Admit it, as someone with T1D you like to, no, have to control what happens to you with regard to being poked and prodded. We are subjected to so many tests, shots and site changes that are uncomfortable at the best of times, of course we want to be in control of these. We want to be able to control how quickly the needle is put in, or where. the depth of the finger prick and how hard our finger is squeezed. There are so many different aspects of T1D that cannot be controlled, so we really latch onto what we can control and tend to fight off any that threaten this.

For me, I haven’t let anyone test my blood sugar in over 10 years! It’s my thing, it’s personal, it involves getting into my space and and making me bleed for crying out loud! It hurts quite a bit of the time (I have such skinny and bony fingers!) and overall I just haven’t trusted anyone else to do it and do it well (not to mention wanting to be the first to see the resulting number so that I can decide if I am actually going to reveal the real number).

In the past couple of days it has come to my attention that maybe this isn’t as good for me as I was thinking. My Mum, Dad, Boyfriend, siblings and friends watch me test but I do it so quickly that to them it’s really just a 10 second blur, they couldn’t replicate it themselves without direction. Does that matter though? I mean how often am I in a situation in which I am unable to test my bloods? And that was were I stumbled in my thinking. Day to day I’m generally not in that situation but in the past week I have been verging on it quite a few times, leaving my boyfriend sitting there doing his best to make me eat and get my sugars up (which he is amazing at) while not knowing if what he is doing is having any effect because I’m refusing to test my bloods again. Take it one step further to him finding me on the floor or unable to wake me in the morning (God forbid either of these scenarios actually ever eventuate, although they have in the past) and he NEEDS to know WHY I am not responsive so that he can take the appropriate action to help me. I think he had been musing on this too because this morning he asked if I could teach him how to do a blood sugar test.

This morning I said yes, lets do it. I sat him down and instructed him to test his own blood sugar (he got a perfect 5.4) and then he went on, unassisted to check mine. I took photos to try and distance myself from the whole thing (I was rather worked up) but he did a perfect job! It didn’t even hurt (I wont tell you my number, lets just assume I wasn’t high but it was above his).


Now someone that I spend a great deal of time with (when we are in the same city) is capable of not only treating my blood glucose when it’s low but testing to see if that treatment is required. It has put his and my mind at ease that now,if required he has the knowledge and capability to do this.

I still think that a blood sugar check is very personal (to me at least) and is something which I intend to keep control of but when appropriate and for the right reasons I am now okay with the idea of handing that control over to someone else (doesn’t mean I wont make attempts to snatch the meter before the number appears though).

As always these thoughts and opinions are mine and mine alone, you may find yours to be different and that’s absolutely fine 🙂 Please feel free to share your thoughts on blood sugar tests. Do you always do them? Do you let anyone else? Does a member of your family know how to? Let me know in the comments below or over in Instagram @hopie_duncs or twitter @hopieduncs

Have a great day guys.

Hope