Sunday, 17 May 2015

You're a Fat F@#! and You Give Diabetes a Bad Name!

When I was diagnosed with type 2 diabetes, it took me some time to become aware of all the various resources that were out there for me. There were various mainstream informational websites, and a few personal blogs. I didn't even have an inkling that there were exclusive forums for people with diabetes, until I found a reference for one in a blog.

So I joined the forum, excited to meet other people and see what it was all about. It opened my world to a whole new level of knowledge I had not been exposed to through the mainstream informational websites, and it made me consider so many questions related to day to day living with diabetes. At the time, I was struggling with other life challenges, as well: I had been struggling with underemployment, lack of medical coverage, and a lack of food, so the forum provided for me a place to come, get some encouragement, and escape reality for a little while.

While I made many valuable friendships, and met folks who helped me realize that I'm not alone in my path with diabetes, I also met a lot of jaded and hurtful individuals. And I was very much not prepared for that. Sure -- there are always trolls and mean persons on every corner of the internet, but this was different: these were people who exclusively hated me and held me in contempt for having the 'wrong' type of diabetes. And that was something I could not understand.

Now, I am well aware that I may not have the most easy going personality -- but this problem was beyond my having ever joined this forum. A simple search through their archives, and one could find thread upon thread of vitriolic, incredibly detestable hate-filled fests against persons with type 2 diabetes. On top of that, administration seemed to care little about monitoring this type of bullying, and called it "constructive dialogues that needed to be had." It was frankly, quite off-putting. The forum quickly became detrimental to my health, contributing to feelings of shame, self loathing, and depression. I felt myself addicted to it, as someone who's addicted to the person who has become their abuser. I was glad when I was finally banned -- a woman took to insulting me after an innocent reply to a post, and when I replied in self-defense mode, she conveniently deleted hers... It was hurtful, and I felt very much betrayed. I still do. But it was for the best. There were people who only pretended to be my friend, and after I was gone, completely stopped speaking to me. Just like junior high. The whole thing was gross.

It wasn't all a loss, however. Some of the people who I had friended decided to find me and friend me on other social media outlets. They missed my insights and my writing, and encouraged me to blog; they were instrumental in me even starting this blog. Many of them are still my friends till this day. I value those friendships very much, and my life is richer for having them.

But... after leaving that forum, I found that this terrible hatred, and vitriolic scene was not just a problem exclusive to them, but instead it was a part of a greater online diabetes culture. No matter what group, page, or discussion you joined, there would always be discussion about persons with type 2 diabetes being to blame, being fat and gross, having a 'different disease that is not mine and needs to be renamed so we're not associated with them because they gave it to themselves,' not having 'real diabetes,' not being important or deadly, and not to be considered as allies, but as people who have ruined things for 'the rest of us.'

Frankly... I've never been hated so much by someone for just existing. Not even as a Latina woman, in a predominantly Caucasian state; not even as an obese woman by persons without diabetes!

I quickly became very resentful of these people. I sought out many arguments purposefully, and tried to argue it out with as many of these haters as I could. In my mind, I saw them as immoral, awful people, who needed to be put in their place. I saw the culture of rampant discrimination, bullying and persecution, and I just had to get on my little crusade to fix it. I sought to try to force people to see that type 2 diabetes was very much misunderstood, and that they needed to see this for themselves as much as their own type of diabetes was misunderstood. I argued, and I got on my soapbox, and I ran myself ragged.

Some folks were on my side and argued for me, and even wrote extensive blog posts... and some other folks were not. Some other folks were more lukewarm: they could sympathize with me, but they still wanted the 'comfort' of relating to others about how much they resented my own type. I felt like these folks wanted to eliminate us, like a kind of ethnic cleansing: obliterate us from existence, so they could get justice served for their own misfortunes. We are 'the punching bag' for their child, or their spouse, or their whoever having gotten their type of diabetes.

It's become very challenging for me to not reserve a well of pure hatred for many, or most of these people. But slowly, and with time, I've come away to a different place when it comes to the conversation... I can't have anything but sympathy for these folks.

You see, the feelings, hatred and vitriol -- though hurled at me and others living with type 2 diabetes -- have absolutely NOTHING  to do with us... and everything to do with those who hurl them. They do not say a thing about us; they simply speak of unmet needs, of emotional trauma, of personal agony and challenge, of isolation and lack of recognition.

None of this has anything to do with me. It has everything to do with:

  • The stress of living with a deadly chronic condition, and a lack of acknowledgement of this reality by friends, relatives, the media, and the medical community;
  • The frustration of living in a world rampant with ignorance about diabetes in general, but especially about any other type that isn't type 2;
  • The lack of psycho-social support and mental health available for people living with diabetes;
  • The often inevitable feelings of seeing oneself through the lens of a victim's narrative because it's really hard to rationalize to ourselves the WHY we (or our loved one) got such a sucky hand in life (a subject that could well fill another blog post, on its own);
  • The feelings of a need to 'make things right,' and avenge the lot in life we got (or our loved ones) by attacking others that society has told us 'gave it to themselves,' so that we can feel better that we were 'innocent' (as if those others were guilty, somehow) ;
  • The desperation of not being able to find healing for ourselves, or for our loved ones... often, the desperation of complications, or a lack of research and a cure;
  • Simply... the pent up agony and anxiety at not being recognized on almost any outlet, ever... even as rarer conditions get at least some moments in the limelight.
I have distanced myself a lot from many of these conversations, and forums. I went off to make my own diabetes support group where this type of vitriolic atmosphere is simply not tolerated. Where a culture of being one another's advocate is encouraged -- because we're all we've got. Outsiders are seldom interested in any diabetes, of any type. Period. It's up to us to educate ourselves as much as we pretend to educate others. 

But just because I've surrounded myself with love, and support -- and rewired the conversation -- doesn't mean that the hate fest doesn't live on outside of my bubble. Oh, it does.

So a couple of nights ago, when I was misguidedly arguing with a friend over an idiotic political meme (as you do) and they lashed out at me, declaring that I was 'a fat fuck, who gave diabetes a bad name,' I didn't even blink. They proceeded to unfriend me, and thus ended a long friendship... But I knew the insult had nothing to do with me. I knew the person had waited long and hard to find an apt moment to hurl the insult at any person with type 2, and therefore, stab life right in the groin. I knew the person had been struggling long and hard with some pretty scary complications from diabetes... and needed something or someone out there, to pay for it; to be their punching bag. I knew they were writing their own victim's narrative. 

Had they done all the right things, some might ask? I don't know. Does it matter? Do they 'deserve' their pain, somehow, if they had not? I think we've ALL done all the right things, and all the wrong things at one point, or another. At the end of the day, frankly, diabetes doesn't care whether you 'gave it to yourself,' or not. It has little empathy. In fact, it has none.

I simply don't get angry anymore. Instead, I love these people, and I let go.

Once one understands the mechanics of what's at play, it's easy to let go and forgive. It has nothing to do with me, after all, and it never has. I respect the walk of my fellow friend, though it's not my own. It's not my duty to make these people feel better about their own type of diabetes by letting them belittle me... no. 

But I understand, and thus I let go... For in unfortunate choices, or through hatred, and in pain, people are still human. They still deserve some dignity and some humanity. So you let people go, and you hope they find some healing. You hope their lashing out at you helped them, somehow. You hope they find their peace.

You let go of all the folks that do not build you up... so they can find whatever it is might build them up. We're all (though sometimes reluctantly so) in this together... So, off you go. 

Monday, 4 May 2015

Researchers at loggerhead over benefit of diet soda to weight gain and diabetes




Diet drinks are good but like other things should be consumed in small
quantity. As there are lots
of theories about why diet
drinks is safe and vice versa.

For instance, a study
published in the journal
Trends in Endocrinology and
Metabolism
in 2013 pointed that frequent
consumers of these sugar
substitutes (such as aspartame,
sucralose and saccharin) may
also be at increased risk of ...
metabolic syndrome, type 2
diabetes and cardiovascular
disease.

Also the findings of the San
Antonio Heart Study suggested a
strong link between diet soda
consumption and weight gain
over a long period of time.

Meanwhile there are also studies that
suggesting zero-calorie sweetened
beverages, including diet soda,
may help people in maintaining their
weight.
For instance, a study
found that overweight teens maintain their weight by switching from sugar-
laden drinks to zero-calorie
options such as diet soda.

So as researchers are at loggerhead over the benefit of diet soda
especially in relation to weight gain and diabetes, my advice for
consumers is to drink diet drinks moderately.

Monday, 27 April 2015

Unborn babies test for type 1 diabetes supported by $8m

The first study in the world to

test unborn babies for type 1

diabetes has reportedly been supported by an $8

million funding injection.



University of Adelaide where the national study is being carried out

is the first in the world to test

pregnant women for the probability that

their unborn child may have the

condition.



The funding is being provided by

the Juvenile Diabetes Research

Foundation and the Helmsley

Charitable Trust and comes on

top of a $35 million Federal

Government grant over five

years.

The Foundation's chief executive

Mike Wilson said unlike type 2

diabetes, authorities still did not

know what caused type 1.

"Type 1 diabetes has a very

strong genetic element to it, but

that doesn't determine alone

whether you develop the

disease," he said.

"You need to know what

happens in the environment to

trigger its initiation."



Researchers are hoping to find

out whether environmental

factors trigger the onset of type

1 diabetes.



Type 1 diabetes affects the

body's ability to make insulin,

which controls blood-sugar

levels, and can be developed at

any age though it is most

common in children.



Principal investigator Professor

Jenny Couper said the money

would allow researchers to test

1,400 pregnant women who

have type 1 diabetes, have a

partner with type 1 diabetes or

who have already had a child

develop the disease.

"It's the only study in the world

that is going right back into

pregnancy to look at what is

causing diabetes and what we

could change, most importantly,

to prevent diabetes," she said.

What matters to you about device instructions?


Friends at the FDA called. 


Yes, I have friends there. 


They were looking for thoughts on device labeling and wondered if I could ask around. 

Sure, what are friends for? 

I would love to help funnel back thoughts to them from the DOC, not just my 2¢. It is all very informal but I hope, maybe, we can help them organize their thinking if they get to more formal asking. 

Willing to help?


Background:
Here is the little of what I know, labels are the instructions on how to use a device, what it is intended to do and what to do if there is a problem.  

RAPS aka Regulatory Affairs Professionals Society notes that unlike drugs devices do not have standardized labeling. “Under 21 CFR 801, medical device manufacturers are required to label their products with certain information, but the format and layout of that information is for the most part left up to the discretion of the manufacturer.” 1

Given that devices range from fairly simple to very complex it may make sense not to have a one size fits all standard. My BG meter is not the same level of sophistication as the CAT scanner at hospital, even if both are medial devices.

In this case FDA is asking about home-use devices. In the diabetes world that is a wide range of things from meters, insulin pens, pumps, CGMs, uploading software and more.

In a recent document FDA said this about home-use device labels:
Medical device labeling provides safety information, instructions for use, and/or other necessary information to the user. This labeling can be essential for home-use devices, which are much more likely to be used by lay users, who frequently have not been trained to use such medical devices and who are especially reliant on the instructions for use and other information provided by the device label and package insert.  2

AdvaMed the medical device association in 2013 said, "The development of a standardized Table of Contents (TOC) for device Instructions for Use (IFU) may be a useful tool if adequate allowances are made for the broad range of device types, users and environments."  3

So there we have the RAPS, FDA and AdvaMed, A.K.A. a bowl of Alphabits of regulatory professionals, regulators and industry. 



Notice a key group missing? Me too - Users, AKA patients. Maybe that is why they called. 


Here is my ask - take this quick survey. I made it up - none of it is their's. I’ll summarize the results for my friends at FDA and if you would like to see those too, share your contact information at the end of the survey and I send you what I send them. 

https://www.surveymonkey.com/s/MQ9BKQQ



Thanks



Sources:




Help a Dad asking for better education.

Tom Karlya, aka Diabetes Dad reached out and asked for help getting the word out on a North Carolina diabetes education ask.

I'm happy to help share.

The effort is to help provide education about the symptoms of diabetes so that kids are not sent home entering DKA with a suspected flu or other childhood bug. Tom outlines the issue better than I. Like so many advocacy issues this popped up at the last second. All the more reason we need a strong advocacy database.

http://diabetesdad.org/2015/04/27/today-the-world-changes-but-we-must-act-by-2pm-est-please-help/

Sunday, 19 April 2015

Diabetes breakups

I'm sorry. I wish it hadn't come to this, but I'm afraid it's over between us.

I don't know why you are looking so surprised - you must have known this was coming after how things have been between us over the last few weeks.

We've been inseparable for so long now. Hardly a day has gone by in the last 5 years when I've been apart from you. All those times we've shared. All those adventures. All those scrapes we have got through together. And now it's come to this.

I know the polite thing to say is that this is down to me, but we both know that isn't the case here. It's not me, it's you. You've changed - and not in a good way. It's not just me that thinks so. Our friends have noticed the change in you too. And I'm afraid I can't go on living with you like this. You have let me down, when I needed you most. And then when I forgave you and tried to go on as before - you just went and let me down again, and again. And now I hardly even recognise you. I just don't know who you are any more.

Maybe you are looking for someone else? Someone with deeper pockets maybe? I hope you'll find someone for your future, but I know for certain that it isn't me - not while you are behaving like this.

And it breaks my heart, because we have been in this together for so long. Perhaps I came to rely on you too much? There were times when I thought I could accomplish anything as long as you were by my side. But now? Now I'm just waiting to be let down. Waiting to be abandoned. I can't trust you - and I can't be with someone that I can't trust.

I'm not angry I'm disappointed. And angry.

So I'm sorry, but I've found someone else.


For those who have *no* idea what I am going on about... after many years of faithful togetherness it seems that Fruit Pastilles (my pocket-based hypo remedy of choice) have changed their formulation. Over the last fortnight I've had to ditch large parts of several packets which became an unusable gooey mess covered in irremovable tinfoil, occasionally plastered to the inside of my jeans pocket. Nice. The worst discovery was during a training run for my forthcoming 10km road race in support of INPUT. Feeling a bit low and discovering half the remaining pastilles rendered useless 5km from home put me in a pretty tight spot for my run back.

Thursday, 2 April 2015

Possibly one of the most inexplicably stupid things I have ever done diabetes-wise

My blood glucose readings, yesterday.
Well... here's a thing. And I still can't actually quite believe that I did what I seem to have done.

The setup
Last night we had a smallish portion of spaghetti as our evening meal. This I realise for many would be a complete no-no, but pasta has typically not been the nightmare for me that it is for many. After little experimentation and tweaking I have managed to work out a reasonably successful strategy so it no longer fills me with dread - we eat it maybe once a month.

My approach (depending on recent results) usually involves a 2.5 hour dual/combo bolus at 60:40 for the calculated dose plus an extra 1u. Previously I'd also needed an extra unit up front too, but had dropped that about 9 months ago following some post-meal dips.

More recently my previously solid post-meal performance has been *slightly* marred by a smallish rise something like 4-5 hours after eating (when the majority of the bolus was waning) so yesterday I decided to rejig my approach a little since I have a Libre sensor in at the moment and can watch what's happening. So last night I went for the calculated dose+1u as 40:60 over 3.5 hours and added the extra unit up front and watched and waited.

Annoyingly I was starting from 8.3, but spaghetti often takes a while to get going for me so I wasn't unduly worried. Stayed pretty steady for the first hour then rose gradually by about 1.5mmol/L towards hour 2. Stupidly during this time I decided to confuse matters by bolusing and nibbling on some snacks that were circulating. By about 3hrs after eating I was 5.2 with vertical down arrows (and DW still chugging away) so I gulped some precautionary Lucozade. Headed off the hypo fine, but then my BG rose and flattened at 8.5-9.5 for an hour and a half (presumably spaghetti kicking in at this point). Then inexplicably at 4.5hrs post-prandial (10.30pm) I had another unexpected BG 'kick' up to something like 11.5 so, getting a little frustrated, I whacked in another unit despite considerable IOB (insulin on board). Sat and waited until midnight and the Libre trace was pretty flat in the 10s-11s - no sign of the 1u or IOB making any impact. Just after midnight I topped-up my IOB to make it the 2u I had intended to go to bed on to counteract the remaining spaghetti fallout.

Just to recap: Spaghetti is usually pretty predictable and not a problem. Added complication of snacking/bolusing/dose stacking/dipping/(over)treating *and* trying a new system all at the same time.

But we've STILL not got to the stupid thing...

The stupid thing
One of the great things about the Libre for me is the ability to see what's going on overnight. And also that if I happen to wake, even for a moment, I can scan and check levels in a way that I simply *do not* do if it requires me to fingerstick test.

I checked at 4am and had been pretty much flatlining around 9.5 since 1am. No insulin left on board. I consulted Artoo who suggested a correction of just over a unit, but I wanted to err on the side of caution so I went for a manual bolus of 0.9u (about two thirds of the recommendation).

I woke three hours later a little groggy and scanned for the Libre to read 'LO'. Artoo showed nearly 2 units of insulin on board.

Ehhhhh????

Checked downstairs via BG meter which confirmed BG was 2.2mmol/L. Bewildered and glugging Lucozade I tried to make sense of the situation...

Checking my bolus history I read that at 4am I had bolused not a cautious 0.9u, but 6.0u. Six units. SIX! My BGs had, not surprisingly, dropped off a cliff around 5.30am.

I simply cannot understand how I managed to do that. Even though one figure is very like an upside-down version of the other, I can't believe I could have made that error as all the buttons etc would be on the wrong side of my robot counterpart if I was holding the pump upside down.

But however it was that I managed to construct that error, there seems no denying that I did it.

And it's not one I'm wanting to repeat any time soon!