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Friday, 20 May 2016

Blog Week Day 5: Tips & 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 have to apologise for the lack of blog yesterday. I wasn't feeling it, and I don't like to force myself to write if I really cannot get into it. So there will be a double upload today. You can check out yesterdays blog, uploaded today here.

So without further ado: Tips & Tricks Time!

Diabetes Supply Overflow

A few weeks ago, I uploaded the meme I had created on leaving the house before and after diabetes, which was inspired by the fact that I have to take a mini-pharmacy everywhere with me. I have been trying lately to take some of the weight off my shoulders and try to use a small(er) handbag. I can leave the house now with a juice or pee-jar full of jellybeans, meter, strips, lancing device & pen. Of course it does depend on how far I'm going, ability to quickly procure more supplies & hypo treatment if needed, and how long I will be gone. Using CGM full-times means that sometimes I can even leave without meter, strips & lancing device. The hypo treatment & quick-acting insulin pen & 2 to 3 pen tips are the most important things I might need when out. I frequently run out of insulin throughout the day (I'm not good at looking ahead for my insulin needs). If I run out completely and there's nothing at all in my reservoir, I use the pen to inject insulin into the reservoir. No need to take a reservoir connector. If I am mostly out but have enough for basal but no boluses, I inject the boluses - but do it straight into my canula so I don't have to feel the needle. If you look at where the hypodermic needle goes through a canula (Medtronic Mios are particularly good for this) to insert it into your body, once you remove this needl there is still a small pin-prick sized hole that you can inject into to avoid having to stick an actual needle in your skin. Yes, I hate needles this much.

MINE (food)
I have a co-worker who likes to eat my jellybeans. I have begun to counter this in 2 different ways. Firstly I keep my jellybeans in a urine sample jar (those things are sterile) because no one wants to touch that. I have also recently begun stocking some Bertie Botts every flavor beans. They legitimately mean every flavor. There is a vomit flavour, one, and yeah it tastes as stated. I can't stomach them. So I put them on the top of my larger jar of jellybeans, with all the acceptable flavours way way down the bottom. My jellybean jar has remained untouched by anyone but me of late.

Girly BGL patterns
How many other people get warned against using parts of your body that aren't your stomach as canula sites? I'm sure my educator sighs internally when I tell her about the newest part of my body that I have decided to try with my canulas. Something about different absorbency rates. I've made that work for me. Previously I have given TMI when it comes to how badly my menstrual cycle fucks things up in the land of good glycaemic control. But no more! I have now worked out when my BGL is running higher, lower and holding steady over my menstrual cycle, and I plan my set insertion sites around this. During the few days when I am running higher, I place a Sure-T set in my leg, because the constant movement and more muscle gives me better sensitivity, helping to lower my BGLs. When I am running low, I place Mio sets in my hips, where I have the most fat and seem to have the worst sensitivity, to raise my BGLs. All that fat. Doesn't really move much. And when I'm pretty even I place Mio sets in my back and arms. I never use my stomach - that is CGM only territory, so is constantly in use by sensors. 

I'm sure I have many more tips, but nothing that my exhausted brain can remember, which brings Diabetes Blog Week to an end.

You can read the final responses at this link here.

Once again, Thank you to Karen at BitterSweet for hosting a week full of fun, creativity, personal reflections and no sleep.

I am looking forward to a weekend of blog catch-ups where I can finish reading the blogs (I think I got through roughly a quarter of all posts during my exceptionally busy week), and clicking the sign-up buttons on a bunch of them so I can continue to follow them. I also want to try to get into a few more of the online support platforms if I have time (I can find the DOC overwhelming in the sheer volume of support sometimes) and might even give that twitter thing a go (I think I have one, lying completely dormant somewhere).

Diabetes Blog Week Day 4: The Healthcare Experiance

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!

Excuse my tardiness. I started this last night, but got very, very tired and felt quite unmotivated. Today is a better day for motivation. 

In my perfect world, Healthcare would be more unified. At the moment, trying to access a range of services is a very disjointed, costly and timely practice. As a Type 1 Diabetic, my healthcare team should consist of:
 - A GP
 - Endocrinologist
 - Diabetes Educator
- Podiatrist (I had to ask my husband:"What are those foot people called again?" because I never see these guys)
- Optometrist
 - Mental Health team
- Dentist
- Pathologist
- Probably a bunch of other HCPs that I don't even know exist

Each of these different HCPs and medicine areas need different types of referrals, and usually require you to prompt your GP to be given information about them. A lot of the time, unless I know about and ask for the service that I am wanting, it's never mentioned to me. I've only seen the podiatrist once, because I had one service left-over on my care plan and the care plan nurse just allocated it to the podiatrist. I haven't seen a dentist for a little while because nobody is prompting me too, and that's just another thing to remember about my health. I do get a reminder to see an optometrist so I can get my licence every year, and I make my endo & educator appointments reoccurring appointments (Yeah, you can do that. Medical software has a cool 'Make reoccurring appointment' button that you can ask the receptionist to click).

With a disease like diabetes, trying to balance all of these appointments is hard enough, let alone doing the leg-work on each to find good doctors (or any nearby doctor at all), get a referral and make an appointment for each. Where you are regularly checked for each of these health points, and from this given access to doctors who will meet your health needs. My experience is that most HCPs don't know who to even send you to when you do ask, and they expect to be told a name to write on the referral. I was lucky that I already knew my endo before I was diagnosed, and that my endo passed me on to the worlds best diabetes educator. I did ask my GP for a mental health care plan once to talk about some mental health issues I was having related to my diabetes. I didn't know the name of anyone particularly good in that field, and was given a referral to the first name alphabetically on my GP's list of mental health professionals. The person that I did end up seeing thought that hypos were hilarious and said she liked watching people have them. As a side note, my fear of hypoglycaemia and subsequent high BGLs was why I was seeing her......She was not a winner in the health professional field.

So I guess ideal access for me would follow a path of:

1. See GP.
2. GP refers on to clinic nurse for full assessment of multidisciplinary health needs.
3. Nurse does up plan covering each aspect of your health (eyes, feet, teeth, mental health, educator, endo) and is able to give you suggestions on who meets your needs in each area. (This would rely on a better, shared health service where GPs can access notes about services in their areas used by all health professionals. The current model is very segregated where GPs must build up their own database of names, and sometimes they do not have any listed. I'm not asking for a program where Drs rate each other, bur rather an accessible database where basic details of any services (ie. area of interest, price, waiting list, what they are used for/do, etc) in the area can be logged by anyone coming across a new service. I do something similar to this in my job for a particular disease and patients are always very grateful that they can be told about multiple services near them in one conversation.
4. Referrals are given and arranged for all at the one time. This can also include support services such as health organisations (Such as DQ) or even support groups for particular illnesses in the area, rehabilitation programs, etc.

For patients who struggle to know which doctors they need to see and what support is available to them this could be a lifeline. As I mentioned previously, I run a support group, and my educator now gives out my contact details to any patient that she thinks would benefit from peer support. I am happy to work with her on this because it is one less thing for patients to worry about, and really creates a holistic approach to healthcare.

For other brilliant posts on this topic, please see here

Wednesday, 18 May 2016

Diabetes Blog Week Day 3: Wild Card - My Day in Food

Some people track every bite they eat, some might not remember at lunch time what they had for breakfast or if they even had breakfast. For one day, document everything you or your loved one with diabetes eats and drinks. The good, the bad, the ugly, the proud, the ashamed, the...whatever. We promise not to judge!!

I am intrigued by this topic. I am an advocate of the notion that being fed is better than not being fed, and so therefore encourage no judgement on any food consumed. The topic, even though it is judgement -free, is still asking me to evaluate what I put in my mouth and when.

So it is with trepidation that I start about evaluating my food choices for the day.

 A bowl of cereal, not measured, eaten hurriedly at my desk at work. I eat Special-K because my husband tells me it has an acceptable protein level. I don't really care about that, but he does, so I continue to eat my cardboard tasting cereal. I don't know what happened today, but my BGL afterwards was 16, when normally for the exact same meal every morning my BG is at 6 - 7. I guess diabetes just wanted to remind me that its still hanging around.

BGL back to normal! I had a meeting at 10am, so made a hot chocolate and had a half an oaty slice muesli bar to tide me over until lunch.

I was *swear word-ing* lazy this morning when I got up, and skipped the making lunch part of getting ready. There's not too much open for lunch right near my work, so I went to Maccas to have a banana bread. Banana bread is basically my thing. I would sell my kidney for a good slice of banana bread, and Maccas do some of the best, even though I refuse to eat anything else off their menu.

Its the afternoon, so I was dropping. I had the last half of my muesli bar and some crackers that I found in my snack drawer at work. It did the trick and I was able to drive home without having to down an over-heated popper. Score.

Still bloody tired, so I napped when I got home and didn't plan dinner. The result was a Grill'd burger and some sweet potato fries.

Typing this list shows me that I still hate seeing what I have eaten. From morning tea onwards I can only tell myself that I am a horrible human being when it comes to food. At least tomorrow I have a later start and will have time to make a salad sandwich for lunch.

For more blog posts on this topic, click here.

Tuesday, 17 May 2016

Diabetes Blog Week Day 2: 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!)

I'm taking a break from reading yesterdays blogs to type this. Because Australia is often the first country to participate each day, I find that the best catch-up time for me is the next day, when the rest of the world has woken up to share their thoughts. 

I think the best way to answer this topic is with a question of my own. How doesn't diabetes affect me mentally and emotionally? The emotional side is the part of diabetes that I struggle with the most. I don't like needles, set changes, finger-pricks, blood, insulin, hypos, hypers and all the rest that comes along with diabetes. But all those aspects are much easier dealt with when I take away the mental and emotional side of diabetes. They're all just actions really. It's when I start to think of how each action I take, each number I see, each set I change, each change to my bolus or basal insulin affects me that diabetes really begins to...affect me.

I have developed a way of coping that I am not sure is really conducive to my health, but it gets me through each high and low reading, so I'll share it anyway. I tell myself that tomorrow I get to start fresh. Its probably a little bit of denial about the bad things that happened to my diabetes, but if I forgive myself for the things that didn't go right, I can start the next day wanting to try. If that doesn't work, a good old cry in the shower or rant about nothing usually does the trick. You just have to get through now to get to the next moment when you can feel good about yourself and happy again.

In an odd twist, diabetes has in fact aided my mental health. Pre-diagnosis I struggled a lot with anxiety, to the point I would pass out. In forcing myself to forget the consequences of whatever I did to make my BGLs behave as they do, and telling myself it was ok to let go for now, I have had more control over my anxiety. I still get anxiety - and sometimes it is diabetes related - but I am much better at knowing how to control it and move myself on quickly. I haven't passed out once since diagnosis.

The mental aspects of diabetes will never go away, so long as diabetes keeps insisting on following me around. I have just learnt not to let them get me down for too long.

Monday, 16 May 2016

Diabetes Blog Week Day 1: 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.)

I open my mouth, and opinions come out. My blog is a space where I can vent, rage, be happy, hopeful, sad, and educate; hopefully without judgement.

One of the reasons that I did start writing my blog was as a way to self-support. Support is often the message that I want to convey the most. Diabetes is a critical and hard disease to cope with, and support in dealing with diabetes can make or break a bad diabetes day.

I find that a lot of my messaging highlights how the general community can help support us, through educating them further about all types of diabetes, how language use can impact on us, and trying to correct untruths told about diabetes.

I look to give myself emotional support. Sometimes I just need somewhere to write down all my frustrations. I am one of those people that needs to get bad feelings out of my system. If I can have a rant or whinge or cry about something and lay all my feelings out, I can move on quite quickly and go back to my normal happy self. Most of the times, I completely forget who or what it was that I was even cranky about in the first place.

I look to support others living with Diabetes. Earlier today I finished tapping out my response to the CGM announcement (self-support), and made a point of the lack of support that I feel as an adult with Type 1 Diabetes. When I was first diagnosed with diabetes, I didn't have any familial support. I didn't have any support from my friendship circles. People either did not want to or did not know how to help support me through my diagnosis. My first month living as a T1D was hands-down the loneliest month of my life. I created my own support, but I never again wanted to see anyone struggle to get support like I did.

I have since created a face to face support group for young adults, and talk regularly with group members, some of whom have become close friends.

Raising awareness of issues is one way that I can help to support others with T1D.

Reading other blogs helps me feel supported.

CGM Brain Jumble

On my Facebook, in my messages, on T.V. All day yesterday I watched news cycle around about the CGM-funding announcement that came from Turnbull's office.

The announcement that, if elected, the coalition will invest $54 million in subsidies for as many as 4000 children (up to the age of 21) to receive CGM funding each year. 

I tried to write about my feelings yesterday, and found that I couldn't. I stopped, started, stopped and went for a walk to try to sort through what I wanted to say. Finally, I wrote down all the crazy jumbled feelings in a document so that I could try to sort through them. I don't know if I'd ever felt so confused about a diabetes announcement in my life. I had to reconcile with myself the conflicting feelings of happiness, sadness, anger, hope, and utter deflation. 

It wasn't until I read Bec's blog that I could even start to sort out why I had spent the day feeling so off about it all. 

I was of course, immediately happy about the announcement. CGM is an invaluable tool, and I am so happy that it was finally being recognised and may potentially be offered to kids who could really use it. And I was happy that it meant that Type 1 was being talked about for once - and even all day long! Something was actually spotlighting us. 

I was hopeful that now that the conversation had been started, that it might continue. Hopeful that one day CGM would be more financially accessible, if this much attention was being paid to it. Hopeful that all the hard work of those groups campaigning would pay off, and they would be rewarded for their efforts.

But after that happiness came the disappointed anger, that Type 1 was being shamelessly bandied about as a way to garner votes, with no set-in-stone promise to show for it. After the election there is every possibility that it may not be mentioned again given the lack of timelines and delivery mentioned, so I felt scared about how it was being used as an election tool, aimed directly at those who had made the most noise - the parents of Type 1 kids.

There was guilt. A lot of it. Knowing that I will more than likely be voting against the technology, because I care about the bulk-billing system and other agendas more. I am hoping that the Labor party will announce a similar pledge to ease my troubled mind. But as an adult with Type 1, trying to save for a home loan, I see a bulk-billed GP and rely on my blood tests to be bulk-billed so that I can afford to see my diabetes specialists. I cut money in a medical-sense where I can to ensure that I can pay for the specialist help that I need to adequately control my diabetes. It has been made very clear that the Turnbull government are still going ahead with the cuts to pathology, no matter what the papers are reporting. It would mean more personal cost to me, to vote this policy in. Its a hard thing to ask someone to do, when you give them the choice to either betray their peers or accept a significant personal cost to themselves, with no guarantee that the cost will even end up being justified. 

I feel a loss on behalf of Type 2 patients. The CGM funding, if it progresses past policy stage, will be added to the NDSS. With the recent cuts to the NDSS in regards to the ability of a Type 2 patient to acess subsidised testing strips, it feels a bit like robbing Peter to pay Paul. 

I feel left-out. Again. As an adult with Type 1 Diabetes, there's not much on offer, and we are severely lacking in support. There are programs for schools, youth transition services, camps and pump-funding grants aimed towards children; there are telephone peer support programs and educational programs for Type 2 patients, and programs, a dedicated website and telephone support program for women with GDM. There's nothing listed under support for adults with Type 1. This was just another area in which we are being overlooked and underfunded, despite the fact that we face the exact same consequences from not using CGM as those under the age of 21. (In fact, in the report by Tu et al in The Medical Journal of Australia 2008, the mean age for dead in bed is well into the adult years, at age 30.2). 

I would be glad and happy to see young type 1 children be given the opportunity to grow up with a little less stress so I am in no way begrudging the children who may receive this subsidy. A very long time ago, when I found how hard it was as an adult to even qualify for a pump, I made peace with the fact that people don't really care what happens to you when you outgrow your childhood chubby cheeks. An acknowledgement of my loss of opportunity doesn't hurt though. That's probably one of the biggest reason that I had a small tear-fest yesterday. My loss, our loss, in this celebration wasn't even given the briefest of mentions. By any party involved. Even though we campaigned right along side all the parents.

I guess I'll play it by ear, and whatever happens, happens. Given that I had the audacity to both age past 21, and get diabetes as an adult, I'm not holding my breath that the funding will ever extend to me. It will just be a nice surprise. Either way, I hope Labor comes to the table so that the kids of the future will have the tools they need to help manage their diabetes at their disposal.

Sunday, 15 May 2016

Basal Tune Up

One of the (many) reasons I love wearing an insulin pump is because it uses only short-acting insulin. Short acting insulin, because it wears off much faster, allows you to more closely mimic the functions of a type zero pancreas in ways that long-acting background insulin can only dream of.

Throughout the day, my insulin needs can fluctuate by a lot. At my most insulin sensitive, I am using less than half of the insulin that I use when I am least sensitive.

Trying to calculate how much insulin I need, hour by hour, is not easy. What works for me one week, doesn't work the next. I lost my rhythm a year ago, and it has taken me that whole year, and constant CGM use to find a basal pattern that puts my A1c within reach of my target.

My background insulin is another way for me to tell the story of my life, for anyone who knows how to read the numbers.

19.00 to 04.00 - 0.9
The night-time shift. It took me many many months to get this basal pattern right. This basal rate holds me steady during dinner, steady at bedtime when my body is still chasing some straggling carbs floating around, and keeps me level all throughout the night. It is one of my higher basal rates, showing the effects that inactivity while sleeping has on blood sugar levels. It can't account for any spikes I might see from nightmares, or lows caused by any extra activity the day before, but nothing can really, except an actual pancreas.

04.00 to 08.00 - 1.1
It seems a small rise - only .2, and some would wonder wether it is truly needed. At around 4am, my body starts to wake up - releasing a bunch of 'time to get up now' hormones. Hormones and diabetes are not friends. I employ this small amount of extra insulin at wake-up time to help enforce law and order in my blood sugar levels. You don't give diabetes any unsupervised play time at night - the dry-mouthed, over-tired consequences are not worth it.

08.00 to 15.00 - 0.8
 My job is mostly sedentary, accounting for a higher basal rate. When I previously worked at a video store on my feet all day, I had a lower rate. From 8am until 3pm, I am mostly sitting at my desk. . This rate is also slowly dropping, as my work place has recently supplied us with those fan-dangled sit-stand desks, allowing me more activity during the day.

15.00 to 19.00 - 0.4
 I aim to exercise at 4.30pm (when I get home from work) everyday.  I have a delayed blood sugar response to this, and the blood sugar drop that corresponds with the extra movement of my limbs happens from about 3pm the following day (22.5 hours after I do the exercise). From 3pm, my blood sugar levels drop sharply, and I require little (or no) insulin until I sit down for the night. I also do my housework and cook dinner during these hours. Its pretty amazing to see how simple little daily activities can affect blood sugar levels.

People associate the pump with freedom - it is. It also isn't. Every thing that is programmed into my pump assumes that I will follow the same pattern of living day in, day out. Theoretically, the pump allows me to get up at 6am to exercise one day, and 4pm the the next. Yes, I can do this and have no ill consequences whilst I exercise, but I also can't do this because of the patterns that the insulin follows. It creates a logistical nightmare the next day, when all of a sudden my insulin needs drop at 4.30am (when I have the most basal insulin, leaving me prone to an overnight hypo) instead of at 3pm (when I use the least basal insulin). 

Thursday, 5 May 2016

Ecologically Diabetic

Diabetes guilt comes in many forms, including the shiny plastic packaging that each and every one of my diabetes supplies comes in.

I really started to notice my diabetes waste in early February when I was trying to cram 30 days of diabetes in the small spaces between my thermal underwear, toothpaste and multitudes of scarves for my Europe Honeymoon.

For every box of test strips, I was filling my recycling bin with a cardboard box, a round tube (as I stuffed all the test strips from one box into one canister) and some folded up paper (presumably instructions) that I have never ever read. For each box of canula sets I folded down way more cardboard than was actually needed. Everything that I needed to stay alive was compacted down into one small black packing cube, and one big pile of environmental guilt.

Fitting all this....
...into this!
 (for reference, this bag is roughly the same size of an A4 piece of paper, and about 5cm deep)

In Italy trash was just part of the scenery on a train trip, forcing my mind to the bags of waste that filled my bin every week back home.

When I got back to Australia, I started researching how to live in ways that were more ecologically sustainable.

There isn't much I can do diabetes wise, but where there are small ways to cut back on what ends up in Landfill, I will. Buying one of those monster kilo chemist bulk bag of jellybeans is better than buying cartons of poppers. Buying test strips that come in boxes of 100 instead of boxes of 50 means I am halving my box-waste, and wearing CGM means using and producing less test strip waste. Fingers can be wiped just as well on the back of a dark pair of pants as a disposable finger wipe (I actually had some DB wipes for a millisecond, but refused to use them on the principal of producing less waste).

I also reuse reservoirs until the markings have completely faded from them, but that was probably more of a wallet-friendly decision as opposed to a green decision. It just sort of serves a dual purpose.

If I was really creative, I could probably go down the route of Ciara Carew and design some fashion from old reservoirs and strips, but I will leave that to the pro.

Diabetes is not the only waste-producing culprit in my household. I was super excited to ditch all those little plastic baggies that you stick meat and veggies in and order some fresh produce bags, a bread bag, and some reusable beeswax cloth wraps to wrap foods in (like my cut cucumber and sandwich, below).

As we use sauce jars, I wash them out and stock them in a newly cleared space in the cupboards, ready to store deli meats and to freeze foods in.

An unexpected gain of my ventures into trying to buy and store foods with less waste, is that buying in this way somewhat forces you to make healthier, fresher food choices. I look for the items that come with little or no man-made wrappings, which is basically the fresh produce sections. I always know what veggies I have, because I marked all the mesh bags - whenever one runs out, I pop it straight into my bag so I can see at a glance which veggies I need - and I know instantly if I can make the recipe that I want at home or if I need to pick something up. When I'm prepared, I eat less take-out. Bread is now straight from the bakery, where I pick up high fiber-low GI, sliced and placed straight into my cute blue bread bag. Meat is bought fresh - I am that crazy lady who shops with her own containers, and asks the deli workers to place it straight into my tared jars. No plastic.

Win for the environment, win for my body, win for a guilt-free mind (and probably, an inadvertent win for my BGLs!)