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

 

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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

The Other Half of Diabetes

“Our topic today is The Other Half of Diabetes.  We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)” Karen Grafeo (Bitter-Sweet Diabetes).

I’m so far behind in Dblog week, my apologies, this year it happened to fall amongst my assessment week and they have had to take priority. I will write all the blogs planned they will just be really late 😛

Emotion, thefreedictionary.com defines emotion to be:

1. A mental state that arises spontaneously rather than through conscious effort and is often accompanied by physiological changes; a feeling: the emotions of joy, sorrow, and anger.
2. Such mental states or the qualities that are associated with them, especially in contrast to reason: a decision based on emotion rather than logic.

So how does that tie with diabetes? How does your body not producing insulin link with you being angry, sad or happy? Honestly, at a chemical or biological level, I don’t know but it does have a huge affect! More than I to care to acknowledge, looking into some stats for this blog I discovered that people with T1D have two to four times the chance of developing depression. Whilst I cannot explain why there is is link o what that link is, I can describe/explain what happens to me and my methods of trying to deal with it.

Last month I was asked if I would mind contributing a blog to Diabetes Daily Grind it could be on anything I liked, there was only an approximate word count that I had to comply with. I spent a few days trying to come up with a subject to write about and then I had a really bad high and ended up blowing up at someone (I have a feeling it may have been my Mum but I can’t rightly remember 😦 ) Mum and I had a big talk about what happens when I am high and how much I have changed emotionally since going on a pump and gaining some form of control over my bloods. I realized that I cannot be the only one who experiences intense emotions with blood level changes and I felt like it needed discussed. So that was my blog Putting a Face to the Name (the High Blood Sugar Demon)  I have linked it in so that you can go and have a look at it rather than post the whole thing. Keep in mind in that post I am only discussing high blood sugars.

I also want to talk about low blood sugars and what I experience with them because whilst my coping methods are similar to high blood sugars what I actually experience is totally different. I want to link in a blog post written  by someone else here because I believe the author has hit the nail on the head and I am not able to describe any more accurately. The post is called ‘Everything was in slow motion. Even my brain was going slow. (A hypoglycemic event explained)’ written by Neel Jadeja on the blog ‘LifeLoveandInsulin.’

Having to deal with such an emotional roller-coaster everyday is exhausting, especially when there is the opinion that if you worked harder and controlled your bloods better then you would not be experiencing the emotions caused by highs and lows. It never stops, you don’t get a holiday, you don’t get paid and there is very little reward for the effort required in comparison to the flack you will get when you are deemed not to have done enough. It’s normal to feel confused, irritated, sad or frustrated about it all and on the whole those feelings come and go as your management changes but sometimes ruts form and those feelings don’t go away, they get worse and start effecting how you manage your T1D, or in some cases don’t manage it. If this happens one of the best things you can do is talk to your DN or endo, let someone know you are struggling, it sucks to admit it and have to talk about it (trust me I know) but if you don’t no one can help. Generally hospitals will have a psychiatrist on the team who specializes in chronic illnesses and you can be referred to talk to them. Being referred to them doesn’t mean you are sick, it just means that you need some support and you may only need this a few times or you may need it over a longer period but if its what you need in order to manage your T1D most effectively then it just has to be part of your management system. If you can find out if there is someone available who specializes in chronic illnesses (or even better T1D) but if not then a general councilor or just talking to your DN or endo is a fantastic place to start.

Most importantly, know that you are never alone in how T1D makes you feel and there is always someone who can talk it over with you and take some of the strain.