Tip and Tricks – #DBlogWeek Day 5

Our topic today is Tips and Tricks.Β  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 β€œunconventional” 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 πŸ˜‰Β 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 πŸ˜‰

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 πŸ™‚

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

 

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The Healthcare Experience – #DBlogWeek Day 4

Our topic today is The Healthcare Experience.Β  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.Β 

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 πŸ˜‰

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 Β 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

Message Monday-#DBlog Week Day 1

“Today’s topic is Message Monday.Β  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 πŸ˜‰

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 Β 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 πŸ˜€

Hope

 

Public Lows

This post is ones that is very important for me to write but one that is extremely difficult for me to post. Because of this I ask that you note that this is my personal experience and thoughts on a situation that occurred for me. Everyone has different experiences and thoughts but these are mine so please be gentle with that. Thank you x

Hypos or lows, they happen anytime any place don’t they? We have no or very little control over them. The ones that hurt and scare me the most-the ones that occur in public. 

Yesterday I was out with my new friend from college in a new city where we are both studying for six weeks. I’d tested and was 4.6 so had had some carbs and we started searching for a supermarket to find a cold drink. I began to feel low and explained this to my friend, by the time we reached the supermarket I was struggling with my words and vision and my head was spinning. Upon reaching the drinks isle I was having black spots in my vision and was struggling to stand. Eventually I managed to work out which drink was diet and which had sugar and found the check out, along the way I’d found two king sized crunches, mentos and a creme egg. Reaching the self checkout I somehow managed to scan and pay for it all. By this point I was barely able to see and had pulled my sunglasses down to help and hide me crying. I had black spots in my vision and nothing was in focus; I was beginning to shake, couldn’t speak well and was terrified I was about to collapse. I managed to tell my friend I had to drink there in the supermarket which (thank goodness) she understood and accomodated. I tested and was 2.2 😭  

 My friend sat with me next to the checkout for about 15minutes as I tried to get sugar into myself. She said I was really white and looked terrible. I went through various stages of the shakes and being unable to express what I needed all while trying to remain upright and not cry. 

I was humiliated, my friend had asked to hang out and I needed up turning myself into a public spectical who she had to babysit and there was absolutely nothing I could do about it 😭 I felt like a horrible friend and failure as a person.

With hypos at home at least I can lie down and sob while I go through the shakes and the sugar kicks in without anyone seeing. At least I am not in anyone’s way. At least no one has to know what happened. 

For my friend I am so grateful, I will never be able to tell her exactly what it meant for her to sit there with me, talking and making sure there would be assistance if I needed it. But I really wish she hadn’t had to. I find it terribly difficult to accept that this happened and whether I like it or not will probably happen again.

What can I do? Well I can work as hard as I can to control and maintain my blood sugar. I can carry fast acting glucose with me. I can do my best to explain to whoever I am with what happens when I have a low and what I may need them to do to help me. I can wear medical ID so that their conversation with a 111 operator is a lot smoother should they have to have that conversation. And if the situation does arise I can talk openly and honestly about it and its effects afterwards. And I absolutely have to come to a place were I know I did everything I could to prevent and improve the situation. It’s not much but in these situations it’s all I can do. 

How do you all handle your public lows? What do you have in place in case you have them? 

Thank you for reading my thoughts and experince, as always if you have any questions please fire them at me.

x Hope

Dating Diabetes 1 Year

Yesterday was David and my first anniversary πŸ™‚ We’ve had an amazing first year together, it has been filled with many new experiences, some struggles and a lot of learning. It has been full of ups and downs (most of the downs caused or largely impacted by diabetes).

Today I want to celebrate the fact that diabetes has not broken us, we have and are continuing to beat it. I also want to share with you all some of the things we have found hard about it, learnt about it and what we would recommend others in the same boat do.

What are the biggest things that you have learnt about diabetes in the last year?

David-The mechanics behind the condition, biochemistry and so forth, given that I’m a biologist, it’s interesting to look deeper into how things work like that.

Hope-That diabetes really does affect every single aspect of your life but it is largely up to you if you let it drag you under or push through.

What has been the biggest challenge about dating someone with diabetes?

David-The biggest challenge really is staying on your toes about it, and staying optimistic and positive when your other half is absolutely done with this diabetes malarkey.

Hope-Letting someone in to see what really goes on with diabetes, to see just how it affects everything and not be humiliated or embarrassed at the results. Accepting that you may need help from that person at times, allowing them to give that help and accepting it with good grace even when you wish you didn’t need it.

What is some advice that you would give someone else dating someone with diabetes?

David-Keep two cans of coke accessible at all times, learn as much about it as you can, and don’t panic.

Hope-Be as open and honest as you can about T1D, have the hard conversations, ask the awkward questions and above all do not let it tarnish or control your love for that other person.

BeyondType1 is an amazing organization that is spreading positivity about T1D by featuring one person with T1D each day and explaining what it is that they do to live beyond T1D. This February is their 1st birthday and to celebrate they are doing a Who Do You Love February, were they are featuring one person each day of the month and showing who they love (someone who really supports them with their T1D kinda thing) David and I were lucky enough to be featured and it just so happened that we were featured yesterday on our anniversary! It was just perfect πŸ’—

Here is my Regram of the post.

Thank you for the feature BeyondType1 πŸ‘ŠπŸ» you guys are incredible.

*regram from @beyondtype1 *

beyondtype1: From New Zealand come this Who Do You Love? from@hopie_duncs “When we are together he does all my pump site changes, wakes up at 0400 each morning to test my bloods and whenever I have bad hypos he sits with me and makes sure I do what is needed. He has encouraged me to blog and video about my diabetes to help others and helps me with this process. He is always researching new techniques about diabetes management and helping me review and reassess mine.”

I am so fortunate to have this incredible man in my life, he provides me with strength, guidance, friendship and support. I’ve never had better diabetes control or been happier πŸ’— Good T1D management takes teamwork, lots of it, so does life in general. Relationships are no different, over the past year I have been lucky enough to find an amazing teammate who makes me want to be and do the best I can in all areas of my life, especially in my T1D management. I really cannot thank him enough for the support and acceptance he shows with regards to my T1D. I really hope that everyone with T1D finds a better half like this. It takes work but it is really worth it πŸ˜‰

X Hope

 

 

Whats in My Diabetes Bag?

Last week someone asked me if I would do a video showing what was in my diabetes bag.

I was so excited that someone asked me to do a specific video! It was a topic that I had never thought of doing too!

So here it is πŸ˜€

  
I would love to see your diabetes bags and what you keep in them too so if you’d like to show me please tag me on any of the following medias πŸ™‚

Twitter: hopieduncs

IG: @hopie_duncs

FaceBook: mypinkpancreas

Have a great day guys!

Hope.

How to Insert the Contact Detach in Your Arm

I made another video! This one is about inserting sites, again but this time the site I am using is the contact detach and I am doing it on my own, literally single handedly πŸ˜›

Here is the link.

  
  If you watch it please let me know if you found it helpful or if you have any different methods πŸ™‚ and as always if you have any questions fire them at me, here, on the video, on twitter @hopieduncs, on instagram @hopie_duncs or on facebook at MyPinkPancreas πŸ™‚

Have a great day guys!

Hope

My First Year Pumping

I’ve done it! 365days with this little doofer. At week 12 I was seriously doubting my decision take on a pump but I am so thankful that I decided to nut it out! Looking back I do not know how … Continue reading

How to do an insulin pump site change, using the Inset 30 for an arm site.

Hey Guys! David and I made a YouTube video today about how we insert an Inset 30 site in my arm πŸ˜€ Here is the link.     It’s a little longer than your normal video because we explained each step but … Continue reading