I'm no longer a VIRGIN in a few areas of the insulin pumping world

Okay - yesterday I posted a few pics of myself on Twitter/Facebook - wearing an infusion set on my arm - along with where the pump was kept.  I have NEVER done this before - wearing my infusion set on my arm - but since my posting of the pics - heard from a few gals who do the same - which is good to hear (along with - get longer tubing - since I have always used the 23" tubing - and they suggested longer - except my Animas order form only shows 23" for the Contact Detach - so I may be stuck there with having to use the Inset II set which comes in 23" & 43" tube length).  It's really odd though - that in researching the infusion sets at the American Animas website - that the infusion sets are way cheaper than in Canada - and that they carry a 43" tubing for the Contact Detach (stainless steel needle).  It's like what gives - our dollar is pretty well at par - why do we pay more - is it due to Canadians paying less for insulin or what??? Do Animas users from other countries besides the USA have same issue with paying more for their supplies?

Anyway, before I have to start doing some relaxation breathing lessons on this infusion set issue with Canada - one of the reasons for trying the arm site is seeing an Omnipod user last week at an Insulin Pump meeting in Cornwall - proudly showing off his pod on his arm.  Well, I have a mini-me version on my arm - with the pump itself nestled you know where.  So there!!  Though I'm really keen to see what an Omnipod is all about - especially with it being smaller now - though not sure when Canadians will see the new version due to Health Canada having to put their stamp of approval on it - tap, tap, tap.

Actually having the pump nestled there - when the pump vibrates for an alarm - like it did earlier this AM - made me become yet another "not a virgin" in a new area - aka

ALARM AUTO-OFF NO DELIVERY

You can read more about this - and my semi-excitement over it (little things get me excited as you can see <lol>) and how not jumping to the gun - I realised that the alarm that followed that one - is a good thing with the Animas 2020 pump (not all of my blogging about the Animas pumps is bad like my previous ones).

Sadly, to view this blog - you will have to click on this LINK to be sent to an alternate universe - feel free to comment there if you have a Facebook a/c (otherwise you have to sign up to post at Diabetes1.org - sorry - they're abit behind the social media times I'm afraid to say).

Meanwhile - I leave you with this picture of ' my girls ' (I'm not shy am I - but really I am) - I feel like I'm a character from Star Trek <lol>.

UPDATE on infusion sets available to Canada - the website for Canadians SHOWS the longer tubing length BUT no pricing which is shown at the USA site.  Why I have a list from Animas Canada that does not show all the same info as their website (at least the list shows the price - but more expensive for Canadians is another story) - that is just too trange.  I am only finding out now - that I can actually order the longer tubing lengths.  When I queried Animas Canada before on certain products I was looking into - they didn't offer anything else than what I saw on the Order form I am given each time I order up supplies (dated Dec 1/07).

I've printed up the list for my own reference (along with the date) - and going to inquire into this when I have to order up more infusion sets (I have enough for 2 months due to being on pump holiday) - with the longer tubing in order to wear set on my arm.  Hopefully they can give me a truthful answer as to why pricing is higher in Canada as well.

The story of my Dolly Partons as I fondly like to call them

Due to some teething problems at Diabetes1.org - where I still try to blog and post in forums from time to time - I'm slowly moving some of my "better" blogs (hey - they're all works of art to me <lol>) to Blogger - to ensure that we/I can still read them (a lot of research/work goes into my blogs I type out).  This one - about diabetic mastopathy is often one that is asked about when I talk about my Dolly Partons - aka silicone implant that even today - still feels a bit weird - but I've grow \ to love it.   Please note, there are some good comments at the original blog at this link (hopefully it will work for you, I have good days, bad days at the site).  

Read on - and hopefully my words make sense - if not - don't be shy - ask - or maybe share your own experiences with diabetes mastopathy - you're not alone.  

*** *** *** *** *** *** *** *** *** *** *** *** *** *** ***

Back in my early 30's I experienced some problems with my left breast - and of course - the first reaction was "breast cancer".   I was immediately seen by a breast surgeon to determine why my breast tissue was sinking in - along with the lumps (like many women - I have very dense breast tissue).  Needle biopsies were useless due to the hardness of the lump - so over the next 5 years - I underwent many slice ‘n dice procedures as more growths appeared - drainage tubing - core biopsies, yadda, yadda, yadda.   I was a medical oddity - making medical journalist documents to the point where I was willing to go to a Miami medical conference and stand naked up on the stage for someone to say - " Ah ha - we know what it is !!! ").

In the end, because I am a gal who likes to be informed about my health - I hit the needle in the haystack - and came across a few articles on a condition known as diabetic mastopathy .  Yes, I the patient figured it out, but the sad thing is, in every article I came across - they said to " leave the lump alone it'll resolve itself after menopause and do not operate as this can lead to more growths! ".  When I told my surgeon what I had discovered - he was very baffled by it all - and I became abit of a celebrity in the medical community due to the way my healthy breast tissue had been eaten away to basically the point of nothing.  I wore silicone prosthesis for many years - which became abit of a party hit - when I'd take it out of my bra - and slam it on someone's forehead - sort of like the neural parasite from the Star Trek episode of Operation Annihilate.

So, advance many years later - about 4 years ago - what has become of the breast at that time is now a  lump - like a piece of wood  - hard - uncomfortable - sometimes painful when my cat would walk across my chest at night time to cuddle.  The recourse at this point in time - due to now a new group of surgeons wanting to slice ‘n dice me - is because of not knowing if this could become cancer over time - and they had nothing to compare me to - was to go ahead with a subcutaneous mastectomy (removal of the breast tissue inside - leave skin intact on outside).  Three days recovery in a hospital (have I ever told you I hate hospitals?) - I was CURED - thump with the bible on my forehead!!!

I'm still getting used to having a "Dolly Parton" again - have abit of scarring problems due to all the surgeries (had to have implant removed and replaced due to wrong size few years ago) - but I'm doing alright.  Because many mastectomy survivors have to keep there arms immobile for awhile - I did develop frozen shoulder -  not annoying enough to cause movement problem - but needs abit of work.  Of course, we diabetics are known for this condition - what isn't with long term diabetes ?  So, I've got a physiotherapist coming by my house for the next little while - showing me the correct techniques to massage the breast due to the scarring and tightening of muscles (very strange - when you have no feelings) - as well as sorting out the frozen shoulder.  The funny thing about the physiotherpapist who works with many breast cancer survivors - has never heard of this condition of the breast - and she knew very little about diabetes - so I educated her about diabetes while she did her magic work on me.  So, one more person out there that now knows that diabetes is a serious disease despite what they see of us on the outside (I told her that diabetics blood sugar when high is like battery acid on an engine - eats away at the good stuff - abit scary to hear - but it's true when you think about it).

So, look out world - I'll soon be back to slinging over the shoulder boulders at you - as I take on the world with my Dolly Partons!!!  Just remember - diabetic or not - always do your monthly self breast examinations - and get a mammogram done at least every 2 years - or as recommended by your medical team that helps with your mission of good health!

Note - This blog was originally posted on August 19th, 2009 at Diabetes1.org - they own my work that I've written over the years for them.

UPDATE - Check out Ann Bartlett's article at Health Central on Living with and Managing Diabetic Mastopathy posted March 09, 2015

My heart breaks for a T1D in a coma for past year

A few days ago – on my Facebook and Twitter pages – I made a statement about a T1D, an RN, being in a coma for almost a year.   I was in an emotional state and close to people who knew her – to really look at both sides of what actually happened.  In reality – we may never know the truth – due to lawsuit that is in progress ....

When I was around 8 and still learning the ropes of diabetes a few years after my diagnosis in the 60's, I remember a friend of mine, Karen Chin.  Her Dad had a car that had cruise control.  In my mind, I envisioned Karen and her family, on a road trip, with her Dad sitting in the driver’s seat, no hands on the wheels and simply letting the car do its thing and they’d get from A to B safe and sound.  Was it due to my watching Star Trek?   The Jetson’s?  My HIGHLY overactive imagination?  In the end, I’m not sure when, maybe when I started to grow up (me? Grow up) – I realised – there was more to “cruise control”.  A child’s imagination can be so funny at times.  Thinking about this yesterday, got me thinking about the devices we use for our diabetes control – aka the insulin pump that has been around since 1963 (a HUGE backpack version).

Early insulin pumps - a cry from what we wear today

In the past, I’ve been contacted by people who have had pump failures and written about at Diabetes1.org and in other diabetic forums on the Internet. I’ve felt privileged over the years to tell their stories – and some people who have read them – get very upset with the fact that the pump manufacturer is being pointed at as the bad guy.  From what I had heard from families – and the testing of the pump by third parties – the finger was seemed to point at the manufacturer – not the user – but in the case of what I heard this week – my mind is reeling in all the what if’s – that it’s been difficult to concentrate on work.

All I can say is – that some of us have come to the conclusion is due to mass production that society now expects – problems WILL occur – a pump will fail - in a perfect world it shouldn't happen – but it does from time to time.  I've never been able to find statistics on how often this occurs – and perhaps someone reading this knows more than I do – but still – where is the line drawn for "X out of 100" pumps – to make the users of pumps be concerned.

~~~~~~~~~~~~~~ 

I was at my first local insulin pump meeting since 2007 – in the quaint town of Cornwall, Ontario.  It was a small group, of  6 adults, but it was nice to shoot the breeze with others over some of the topics that were brought up for discussion by the ring leader John Caldwell.   Someone mentioned about a T1D woman in a coma – and sent to a rehab centre in Hamilton, Ontario.  They were wondering how she was doing and hoping she was alright. 

I didn’t think anything of it – until the next day – having breakfast at the club house (we’ve been working on our sailboat getting her ready for the season so stay there for overnighters).  As I was talking to one of the club members, doing my calculations on George Michael for my morning pig out.  I mentioned about this woman who was in a coma.  He immediately started to tell me about Amanda* who had been on an insulin pump for many years, that his wife who is an RN, had worked with her, and are close friends with her and her family.   She was diagnosed in her early 20’s.  Last June, it appears that a neighbour came by to drop off a package that contained an insulin pump that had been delivered at their house due to no response at Amanda’s house.   They then discovered later in the day, that the reason for no response to the delivery was she had slipped into a coma.

It was revealed that a call was placed to the pump manufacture by Amanda herself the day before – and this is the reason for the next day delivery of a new pump.  Perhaps her pump was having problems?   I cannot say for sure – but a new pump had arrived.   The history within Amanda’s pump had been wiped of EIGHT HOURS –with no record of anything during that time frame.   If she had stopped the basal due to having problems with blood sugars – or perhaps she bloused – and gave too much insulin – but there is no record according to what I was told in her pump history.   From one of her other pumping friends, I have heard that she did enjoy a glass of wine or two or … if she had been drinking – could she have gone low – and then passed out – then into a coma.   Whatever occurred during that time, we may never know. 

It’s all a question of theories at this point, since everything is hearsay – so saying that the pump had emptied out the full cartridge of insulin – like it has with some of the other T1D’s I’ve written about in the past – we do not know if this occurred to Amanda. 

Her family had her airlifted at some point after – at their own expense – to a state of the art health care centre in Hamilton, Ontario that deals in rehab and brain injuries.  She stayed there for abit – but with not getting any better – the family once again – air lifted her back home.  In the meantime, while dealing with this, Amanda’s only sibling, a brother died.  I mean, how devastating is that?

So, a year later, she is still in a comatose state, her eyes are open, but according to her close friends she is not there and they say she wouldn’t want to be living this way – that she would rather be dead.   That she was once a vibrant woman, full of zest for life floors me as a diabetic.   Her family has now decided to honour her wishes of DNR (Do Not Resuscitate) – as a RN herself – she probably knew how difficult this can be for family members – but watching someone who is not all there – is something I know for myself I would not want to be living that way.

As her friends said to me, seeing her in this state, and knowing her well enough that she would tell them to pull the plug, is heart breaking for them to witness (they see her a few times a week).  They’d even go to prison they were saying, if they could perform this duty.  On top of all of this, Amanda’s only other sibling was killed earlier in the year, so imagine what her parents are going through – this is what breaks my heart the most.

The other thing that has been going through my head with writing this difficult blog – that will leave many of you asking similar questions - perhaps having a closed loop system might be the answer - though I still worry that with more bells and whistles that there is more that can hiccup in the devices we wear.  If Amanda  was unable to respond to her CGMS - if she wore one that is  -  informing her pump that she was going low or high – would the pump have the ability to take over at that point – without her telling it what to do as she was unconscious –  and either shut down or give her more insulin?

Will what really happened ever be revealed about what occurred with her insulin pump, like with the other cases or it was Amanda herself at fault?  Who knows?  The one thing that I did learn is if something like this happens to any of us, with our insulin pumps perhaps going wonky, *** DO NOT GIVE IT TO THE FEDERAL GOVERNMENT TO TEST OR HAND BACK TO THE MANUFACTURER ***.  Get it tested by a third party that is impartial.  Whether this has been done with Amanda’s pump – I’m not sure – but due to the legal actions taking place right now – I’m thinking it has been.

*Name changed to protect privacy