Blog Entries With Tag: Type1 Diabetes


Posted: Apr 27, 2013
Hmm, should I have eaten that piece of bubble gum that my BFF Wendy pulled off the road when I was about 6 years old?  I remember watching her pull out little rocks - and wondering - yuck - as she stuck into her mouth (she really enjoyed chomping on that piece of "who knows where it had been before" wad of pink sticky goo with the odd bit of rocks).  Even at that age - I knew it was not the right thing to do - and luckily for me - I never followed her example.  Last time thing I heard about her - about 20 years ago - she was working as an airline attendant - with a tan that screamed tanning bed whore (and I worked in the tanning place she came too - ouch!).
So, why am I talking about eating crap off a road - it is full of gems - who knows what you could get from it!  I mean, yuck, the person before might have had some sort of disease.  Well, according to some researchers - the reason for Type 1 diabetes becoming more frequent (and increasing 3% annually over the past 10 years) has something to do about residing in a rich nation along with less exposure to infectious diseases aka pathogens.  Are we living in too clean a world?

Some of the theory's are that we humans are supposed to be dirty - that we are over protected.  Yeah - I can vouch for that with seeing my Mum friends - constant cleaning of door knobs with Lysol, or not allowing their child to pick up a a penny from the dirt - DON'T TOUCH THAT!!!   If we don't build up immunity - how can we fight off the even more nasty things that attack us that are worse than whatever you might have contracted from a previously chewed by someone else piece of gum off a hot sticky summer road?  Hmmm, maybe I should of partaken in the chewing routine with Wendy now ....

With Type 1 diabetes - our immune system somehow gets mixed up - and decides that healthy beta cells are just as bad as the evil cells that invade our body.  This then causes our pancreas to become destroyed - or at least that's how I - as a nonmedical person has come to understand why I got diabetes.  According to the the report from Medical News Today (see link below) - young children don't develop the proper antibodies due to being too clinically clean.  They state that by being this way - that we don't build up immunity with the help of germs that build up our resistance to fighting off even more evil things that may come our way later in life. The one good thing though is that Swedish scientists have managed to stop the immune system from destroying beta cells in animal experiments.  

To read more about other factors/theories that are linked to the uprise of Type 1 diabetes you can check it out at Medical News Today.  

NOTE:  Prior to getting diabetes as a child - I had chickenpox - what a load of itchy/scratchy fun .  There has always been a theory that having an infectious disease can sometimes lead to Type 1 diabetes (I've spoken to others that have mumps or measles - and they became diagnosed later).   Now, if that's the case - than doesn't this scientific report go against what we've thought  perhaps caused us to get diabetes?
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Posted: Mar 12, 2012

Once again, we are very blessed to have Tori Davidson from Australia share some of her words about living with diabetes.  She had shared her story back on February 3rd about her 35 years of being on the insulin pump.  I'm very blessed that she allows me to add my little bits of artwork that I find - to make her great words have more POP!!! 

Now, I don't necessarily feel the same way as Tori does below here - but I know for some of you out there reading her words - you have also felt the same way.  Feel free to share your own thoughts!

 

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Some degree of insecurity is endemic to most, if not all, people in general. Growing up and living with diabetes appears to cause a vacillation between insecurity and bravado. I have hated people for not understanding my diabetes, for not trying to understand what I need to do each day regarding my diabetes, and feeling insecure that I would not be completely accepted because of its existence. Conversely, I have hated them for wanting to know, or believing they understand what it is to live with Type 1 diabetes, when in most cases they have second-hand knowledge, if any.

Most type 1’s, I believe go through a similar seesaw of denial, insecurity, bravado and acceptance. Apparently we often like to see ourselves as “different”, as “brave” or as “better” than those who are pancreatically blessed. While understandable, these mixed emotions can lead to a complete alienation from the rest of humanity, and I feel fortunate that my own vacillations between these emotions seem now to be mostly absent. Do type 1 diabetics want to be pitied? We all say not, but I wonder if that is strictly true. The phrase “Oh, you poor thing” is ripe to make the hackles rise in most people, but particularly in diabetics, who feel they are coping well with their condition. But this brings an interesting question. If we feel we are “coping well” (or even not coping well), isn’t that a cry for sympathy? Asking for compassion, understanding and support, what do we really mean? We want the non-diabetic community to understand *what it is we go through*, in other words, just how hard life actually is.

To me, that sounds like a cry for pity. Do we want people to know that we have to inject insulin, do regular blood tests, watch our diets, balance exercise and emotions with everything else and how difficult this can be at times, and to shrug with a comment of “Oh well”? Surely that would be understanding without pity? Or do we want people to say “Oh gosh, that must be so hard”, which while indicating compassion also reflects pity. It is a very fine tightrope, and the animosity from the Type 1 diabetic community generally to the unaware non-diabetic community is ill-founded. I believe that type 1 diabetics must expect and indeed want a little pity to obtain the understanding that is so craved. If you really don’t want pity, you wouldn’t complain about how hard it all is, even if that complaint is only internal.

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Posted: Mar 6, 2012

Well, hopefully I haven’t left this second post too long to end the story.  I’ve since discovered that my Dad is still on Facebook (long story) – so even if you posted any comments – he knows the story (though he’s not said anything – he’s a quiet man).  So, on with my little tale of two pumps – who are only trying to do what they do – make me stay alive and healthy with the control of my diabetes.

Last week I told you about the woes of Salvador Dali, my Animas 2020 insulin pump.  George Michael went back to Animas Canada a few days later as he had served his purpose of saving me during my holidays, then all hell broke loose again.  It was time for his never ending insulin cartridge refill that he goes through every 2-3 days (depending on how much insulin we go through – I average 75 units every 3 days of NovoRapid). 

So,  I do the steps we all do with our insulin pumps, DISCONNECT from infusion set that is in our body, REWIND the motor, put new  insulin into cartridge, RELOAD cartridge back into pump,  TIGHTEN the cartridge cap, then PRIME the infusion set tubing.   What happened next though had never occurred, I’d placed the new insulin cartridge into the pump, and was waiting for it to reload up (on the screen after it’s done this – it shows you how much is in the insulin cartridge and then you start PRIMING).  Instead, somehow Salvador tripped up on a few steps, he never told me he was ready to PRIME the tubing, but he just kept on going, e.g. he unloaded the WHOLE  75 units of insulin (into the kitchen sink – I went running over to it – as usually he only squirts out 2 units – this was a stream!!!)  It all happened so fast (wonder if the real Salvador was fast like this – you know – in the boudoir), that I thought perhaps I had missed a step – heck – you never know.  So being the ADD  gal that I am, I decided to do the WHOLE process over, and once again, the same thing occurred – SCREAM!!!   Pressing on any buttons on my pump didn’t stop the action – he just kept pushing out yet another load of insulin.  In the meantime, my DH has made a video of the process, just incase Animas doesn’t believe me (trust me – videos have saved me in the past with large corporations who care about their products when it comes to making a legitimate claim).

 I was right pissed off now (in a polite British way of course), even more if I was an American consumer (and I mentioned this to Animas later on). For Americans, depending on their insurance company they are only allowed so much insulin / blood test strips – if they go over – it’s either out of pocket – or they go without!!!  I mean, how often do you waste 190 units of insulin within a 10 minute period – unless your ratio for insulin is like 1:1 !!!  Now, after skirting out all the insulin a second time, Salvador started doing the same scenario he was doing that caused me to abandon him during my holidays a week before – he was saying:  WARNING – PUMP IS NOT PRIMED. NO DELIVERY. CONFIRM.

I immediately am typing down everything that has just occurred as I wait on hold for Animas Customer Support to answer – and this is all around dinner time – when I’ve just prepared a lovely meal – and I’m hungry (good thing my blood sugars were in the happy zone at the time).  After a 5 minute wait (was amazed at how short it was) I explain the situation with Salvador – advising them to read over the notes in  my file– and within about 15 minutes of answering questions, etc. – they are all set to call up Animas Canada – and get a new pump to me that evening.  That response REALLY amazed me – as I thought that they would be humming and hawing – especially with my warranty ending on my pump – and the fact that this is the 2nd  replacement pump I’ve be receiving from them in 4 years.  I was gob smacked to say the least.  So I hang up the phone, and go off to prepare myself for injecting for dinner, and wondering if Animas USA is not pulling my leg about getting a new pump to me via Animas Canada, as we are having a heavy snow fall outside.  Within 15 minutes, I get a call from a service representative here in Montreal, she’s shopping at the time (crazy woman it’s snowing like cats and dogs) – and she’s asking me what are my 1st and 2nd choice for colour for a new pump – and the pump will be there in under 3 hours.   I thank her profusely – tell her I have to take her out for a coffee one day (she speaks English AND lives about a 10 minute drive from my house – small world).   All of these calls started at 18h00 on a Friday evening – and by 21h00 hours – my new pump – PINK – and named George Michael like my vacation loaner pump are all nicely nestled in my home.  Now, is that service or what?  My only hope is that this latest pump will last longer than the 2 years that each 2020 pump I’ve had over the years has lasted, and that the government of Quebec gets a pump program for adults – similar to Ontario.   If not, I’ll be doing pole dancing as a part time job in order to help pay the loan off (hey – it’s good exercise – don’t put your nose up at it!!).

NB:   I have had a few vacation loaner pumps over the years, along with replacement pumps.  I have LOTS of spare manuals.  I decided to tidy up all the spares I have, and ensure I have only one copy (in French and English) with all the correct settings written in the column provided in the manual (on my holidays – I took the wrong manual – with old pump settings – SCREAM).  In one of the manuals, I came across a letter dated March 19, 2010 – URGENT: MEDICAL DEVICE NOTIFICATION.  This was for One Touch Ping Glucose Management System and Animas 2020 Insulin Pump users.  The letter basically describes exactly what occurred during my holidays with Salvador Dali – and what he had done for his final bow to the curtain.   So, obviously, this is a problem with some of their devices, and as usual, I seem to have this knack for having a sign on my back that says “KICK ME”.  I’ve heard from other pumps users – mostly non-Animas users – who’ve never had any problems with their pumps – and their original pumps keep on ticking way past their warranty stage.  Let’s hope my luck has changed with this 3rd pump – and that I have a long and happy life with George Michael – because sadly – Animas doesn’t make a purple pump … yet … and if I’m ever to change again … I want a purple razzle dazzle pump!!!


If you click on Salvador's picture above - you will find a beautiful tribute to him - RIP Salvador - xoxo

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Posted: Sep 8, 2009

This article in yesterday's edition of Endocrine Today makes me scratch my head.  First and foremost, had this study been conducted in 1976 in the US and not in Germany, I would have been included in these statistics.  Given that, why did they spend money on this?  What do they hope to attain by learning that ketoacidosis in juvenile onset diabetes is frequent?  Do they think somehow they can prevent the phenomenon? 

I don't think a high incidence of ketoacidosis in true juvenile onset type 1 diabetes diagnosis is particularly preventable.  Why?  Let's start with the fact that the progression of the disease normally goes from 0 to 100 mph very rapidly.  Then continue with the fact that kids normally only go to the doctor for a routine annual physical at most annually.  Then there's the fact that glucose and c-peptide tests are not part of a physical. 

I would expect that glucose testing due to the high incidence of type 2 might be added sooner or later but the real indicator of juvenile onset type 1 is in insulin production and beta cell destruction which would more likely be seen in a c-peptide test.  When does beta cell destruction start in earnest?  Is it consistent? 

There's no way anyone is going to mandate a c-peptide test at a routine annual physical AND force insurers to pay for it primarily because the incidence of true juvenile onset type 1 diabetes is so low relative to the total population.  They are truly more concerned with the incidence of type 2 in the total population.  No big surprise - higher incidence means higher cost means more interest in preventing problems. 

Why do I think that a standard A1C, random glucose or glucose tolerance won't catch juvenile onset type 1 before ketoacidosis?  Because unless someone gets real lucky it happens too quickly for a routine annual physical to catch.  And unlessl you've got a PCP who is really on his/her toes the early symptoms are pretty darn subtle.  That's if you go to one 'just cause.

I remember being particularly thirsty for about 3 months prior to my diagnosis.  But it was hot and I was 12 and spent a lot of time outside.  I was active.  So, thirst by itself just wasn't going to stand out by itself.

Then there was the hungry horror stage which quickly ran into the weight loss stage (10 pound loss of a 72 pound child in one week) which only started one week before diagnosis.  The final stage was what we know as the ketoacidosis stage which to the normal average bear initially resembles a flu.  And who on earth takes their kid to the doctor immediately upon flu symptoms?   Who can get an appointment immediately at flu symptoms?  Two days later ... ya, well that's what got everyone's attention. 

The stench of ketoacidosis, the lethargy and being totally out of it stage.  That was it.  Apparently, I couldn't even walk because I remember my mom carrying me to the car. 

But I had only missed one day of school at that point.  It really is fast.  My birthday was Thursday.  I went to school on Friday.  We moved on Saturday.  I went to a Halloween party on Sunday.  I was notably drinking soda I didn't drink and eating much more than normal.  But again, we had moved on Saturday and I wasn't the type to wait around for someone to unpack my belongings so I was active - translation - hungry.  Who knew?

Monday was All Saint's Day and we had the day off.  I was sick.  My sister was getting me tea.  But again, only it was only day 1 of being sick so who would take the kid to the doctor's.  I'm a kid; I get sick.

Tuesday was the difference.  My sister went to school; Mom went to work and she did not like what she saw when she got home so off to South Shore Hospital she carried me.  Thanks Mom.  Thanks South Shore Hospital.   Thanks Banting and Best.  I felt better in short order.  I remember being quite perky on the trip to the Deaconess/Joslin. 

I do not think my diagnosis could have happened much more quickly.  The early symptoms resemble nothing important, nothing notable.  I had seen commercials pointing out the symptoms and had mentioned them but to repeat - being thirsty during the summer and being hungry when running around is just not remarkable to the average bear. 

So do we demand that extensive tests be run on kids at routine annual physicals just in case?  Urine testing as they do in parts of Tokyo (mostly catching type 2)?  Do we demand A1Cs every three months which MIGHT pick something up?  Will more education of symptoms to parents and PCPS/pediatricians help? 

See I don't think so.  Paranoia is expensive and not all the helpful considering the relatively low number of juvenile onset type 1 diagnoses per year.  (I'm having trouble finding a total number of juvenile onset type 1 diagnosis.)  A 1999 study employing genetic testing and CONTINUOUS beta cell damage testing results in "less severe disease presentation."  Not the word "continous."  There is certainly nothing cheap about genetic testing and there is nothing cheap about continuously looking for autoimmune destruction of beta cells thus rendering the concept unrealistic.

I just don't think there is a simple, cost effective answer to preventing ketoacidosis.  I'm sure parents will disagree with me.  I hear screaming from the rooftops.  However, if this were your business and you had to determine cost benefit, what would it show?  Not much benefit.  The benefit is emotional and, right or wrong, that just doesn't (usually) count in business decisions.  So, in this world of capitalistic, shareholder or taxpayer owned insurance companies, it's not likely to count here either.  Sorry.

Doris J. Dickson

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From:

Posted: Aug 27, 2009

Earlier this summer I had the good fortune to be a presenter at a conference on the use of Social Media in medical marketing and education.    Two of the most interesting folks presenting there were bloggers from the diabetes community, Kerri Morrone Sparling of sixuntilme.com and Manny Hernandez of tudiabetes.com .  What really struck me was how they both took a challenging chronic condition, Type1 Diabetes, and turned it into a platform for health advocacy.   

As a result both have become leaders for progress in this field, challenging both technological progress and social sterotypes.    They're not only well-spoken, they're funny and fun.    They have a rich social life as a result.    While I went to my hotel room to answer e-mail and Skype my family, they went out to a hip restaurant with a group of online friends from Philadelphia.    They were all meeting face to face for the first time but had bonded based on mutual support and advocacy.

Since studies have shown that people dealing with a chronic condition like diabetes can become isolated, I think there's a lot to learn from Kerri and Manny. Anyone with a diabetes (or any chronic condition) can enrich their network, although it can take some work at first.

Here are a few of their insights:

The Big Picture: http://www.diabetes1.org/Multimedia/Vlog_Kerri_Sparling_Just_because_you_cant_see_it

On Advocacy:   http://www.diabetes1.org/Multimedia/Vlog_Kerri_Sparling_on_Advocacy_for_Diabetes

On Why People with Type1 and Type 2 Diabetes share common goals: http://www.diabetes1.org/Multimedia/Vlog_Manny_Hernandez_on_Type_I_and_II_Diabetes

Next Post - Great insights from an emerging blog voice (Kerri & Manny, here comes GK...!)

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