#T1D : Diabetes+ is a persistent pain!

type 1 diabetes  link to info – diabetes australia
8fe78547aed00e22dfb41d10bc16e658

Renza writes a chatty and informative blog about living with Type one Diabetes and this post entitled Confusion succinctly describes the tussle of living with vs suffering from this ‘condition/disease’.    During my young adult years, the only people with diabetes that I met (not many) seemed to be super heroes with their management, unlike me who felt as if I was constantly fighting a losing battle with blood sugar levels, and hence, a very bad diabetic who deserved every complication that would inevitably catch up with me.  Social networking and the internet has changed this – yes the good stories, and the bad stories, and every story in between is out there to share.  Finally I began to feel like I was no better or worse than others in the way I ‘managed my condition’ (there we go again with that language).

I was diagnosed close to 40 years ago and was ‘educated’ about what would happen if I didn’t control my blood sugar levels.  The big ones were always:

  • blindness (retinopathy)
  • kidney (renal) failure
  • neuropathy (leading to amputation of feet etc)

So I was most grateful to get to my age with full function of each of these things.  However, the shock was/is finding the number of other ‘conditions’ that those with diabetes just happen to be more susceptible to.  For me, these have included:

  • Hypothyroidism – Hashimotos (another autoimmune condition);
  • Tendon problems – including Carpal Tunnel, Trigger finger (stenosing tenosynovitis), and now months of shoulder pain;
  • Cysts that may become seriously infected – and the risk that any infection is slower to heal with diabetes (10 days in hospital and home visits for a week after that)
  • Retinopathy that has required painful laser treatments to prevent blindness
  • Pre-eclampsia necessitating 3 months in hospital before my son was born
  • As for ‘diabetes and mental health/depression‘, let’s not even go there.

This is not a ‘woe is me’ post, but I’m not sure I really want to hear the same refrain “Oh yes, it is common with diabetics” too much more.  Like today when I went to the opthamologist for my eyes and he tells me I must come back due to some changes that may indicate ‘neovascular glaucoma’:

The less-common neovascular glaucoma that tends to be associated with diabetes occurs when new, abnormal blood vessels grow on the iris, the colored part of the eye.

So there are times that I just don’t want to know any more.  I can get this information if I search for it (thank you internet) but today I just want to forget about it.  That ‘living with diabetes’ is persistent pain in the arse and all the effort put into managing it will never make up for all of those moments that could have been better spent on other things.

diabetes-on-the-brain

 

#T1D – medical supplies for a year?

(I’m now up to update number 5 on this post … and off to see my member of parliament – this is despicable!)  

Final Update!  see final post… and come visit me in hospital if that’s what it comes to…

type-2

Over the 365 days I will be out of Australia, I require:

  • Blood glucose testing strips x 1,850= 37 containers
  • Tubing and insertion devices for pump x 124 = 13 boxes (x2)
  • Insulin @ ~40 units/day = 14600/yr = 146 1ml bottles = ~30 boxes
  • Additional ‘spare’ supplies (pens & needles) for any malfunctions

and then of course there is all the other medication I have to take daily (currently 5 different tablets)  x 365.  Aside from the fact that all of this is pretty damned expensive, it is very difficult to get ‘permission’ to get subsidised medication and supplies to take out of the country in such large quantities.  (Strangely enough, I have never had problems with customs in any country I’ve been to – often my hand luggage is actually a cool pack full of medication!)
ndssNDSS – After have no success or helpful information from any source, I sent the following message to NDSS (all diabetes ‘comsumables’ are subsidised and need to be ordered through them) :

I am  volunteering overseas for 12 months in Laos and require 12 months worth of supplies (pump and blood testing strips) to take with me. However, both the pharmacy and the phone line have informed me that I cannot take more than 6 months worth. This is a huge problem for me. I thought that I could get a letter from my doctor to enable me to get extra supplies but nobody can tell me if this is correct. My sister (also a diabetic) is visiting in 6 months time, but apparently she cannot request supplies for me, or on my behalf. Financially, this is also very difficult to pay the subsidised cost in full, but clearly necessary to maintain my health.
Could you please tell me what my options might be?
Thank you, Annabelle Leve

Looking more closely at their website  I see that :

The NDSS gives you access to a large range of subsidised products that help you to affordably self-manage your diabetes. …
There are limits to the nuliving withmber of products you may purchase on the NDSS. These limits are:
  • 900 strips …
  • 90 cannulae and/or
  • 90 reservoirs/cartridges
per 180 day period. …
Access to the NDSS is only available while you’re living in Australia.
If you’re travelling or living overseas, the NDSS is not permitted to send products to you. Before travelling, please review your product requirements. You can buy up to 6 months’ worth of products to take with you, but is also advisable to have a letter from your doctor to ensure you get through customs.

There is also an additional page with some useful information for travelling – but not for 12 month trips obviously!

OK … I’ll be patient – no response yet, to either phone call or emailed message.  I’m still WAITING!!!  I’m getting CONCERNED!!!  I need to get this SORTED!!!

As for the prescribed medication, I’ve been told different things (again) by pharmacist and doctor about “Regulation 24″ which apparently entitles me to 6 months worth – pharmacist advises me to get doctor to write TWO regulation 24 scripts – doctor unaware of such a thing … still on hold for next appointment.  

Oh, did find out that the 2 prescriptions should NOT be dated the same day – the next day is fine, just not the same day (der??) – advice from Pharmacist, but she wasn’t sure either…

UPDATE (12 days later)

Aside from having my arms jabbed at least 12 times over the previous month, and collecting a bag of 12months of malaria prophylaxis, I am in fact none the wiser about how to get my 12 months worth of everything else.  I’ve asked more people, but nobody seems to know!  The doctors don’t know, NDSS won’t respond except for a big NO, where to next????  Can anyone help /advise me here?  I have two more appointments, one with Diabetes Clinic (and no, the diabetes educator doesn’t know either) and one with my GP, over the next two weeks or so – hopefully it will get sorted!

Perhaps, on either the 31st August, or six months later, I’ll just have to say oh, sorry, I’ve got to go home now because I’ve run out of my life-saving medications.

UPDATE 2 (29th July – one month pre-departure)

Finally got through on the phone line and was once again told only 6 months worth… Yes, I know that, so what options do I have?  Well she says, all I know is that you can only have 6 months … ah, yes, so what happens when I run out?  Well to give her credit, Angela went away to find out, and came back to tell me I could get 20% extra.  Hmmm, ok … and then?  Apparently when most people go overseas they find out about supplies available in-country, I somehow don’t think there would be many diabetics in Laos on insulin pump therapy – maybe I’m wrong but …

So now I have an email address and contact name to write to with my request.  Clearly my other email got lost somewhere along the line.  Again, wish me luck?

Email sent 29/7/16:

Att: Geeta

NDSS Membership No: 00xxxxx
I understand that NDSS supplies are limited to 6 months worth, however I have particular circumstances that necessitate a 12 month supply as follows:
  1. CONTOUR NEXT – Blood glucose testing strips x 5/day= 1,850= 19 boxes (x100/box)
  2. MiniMed Sure-T Paradigm 60cm, 8mm:  10per box: 1 every 3 days = total 122 = 13 boxes
  3. Medtronic Reservoir Paradigm 10per box: 1 every 3 days = total 122 = 13 boxes
My local NDSS pharmacy is: Chemmart

Some additional information in support of this request:

Annabelle Leve  is a volunteer who will be travelling overseas as part of the XXX program managed by XXX.

The XXX Program aims to strengthen the mutual understanding between Australia and countries in Asia and the Pacific, as well as make a positive contribution to development as part of the XXX program.

I would appreciate your consideration of this request, being mindful of my departure date on 31 August.

Thank you and regards, Annabelle

Later… A very quick response this time… as follows:
(not once have I been given an alternative – even if it means paying full price…)

Geeta Srinivasan <GSrinivasan@diabetesvic.org.au>

16:19 (2 hours ago)
to Mark, Angela, me

Hi Annabelle,

With regards to your request of products for 12 months;

The Commonwealth limits are a maximum 6 month supply, this equivalent to PBS regulation 24, which allows a script and 5 repeats as a maximum supply. There is NO provision under Commonwealth guidance for supply greater than 6 months for any registrant, regardless of circumstance

Any further enquiries need to be directed to Diabetes Australia on ndss@diabetesaustralia.com.au

Kind regards,

Geeta

Primary Care Engagement Officer

Diabetes Victoria

570 Elizabeth Street

Melbourne Vic 3000

Mobile:  0477 102 099

Fax: (03) 9667 1779

gsrinivasan@diabetesvic.org.au

Update 3 (5 August)

I have sent an email explaining my situation to the company that supplies the product, Medtronic Australasia – they responded on 1st August as follows:

Thank you for your email. It has been forwarded onto the Diabetes department and a representative will be in contact with you.

No news yet.

Tried making a complaint to the Commonwealth Ombudsman – they suggested diabetes Australia, NDSS, or maybe the health department?  Nicole said she would call back … but no.

Just wrote and sent the following email to Diabetes Australia:

To whom it may concern
I have copied below, an email I sent to NDSS and the response I was given.  I have been trying to resolve this issue for awhile now due to the circumstances described below.  I have received no assistance or advice as to what my options might be.  I am not in a position to return to Australia within 12 months from departure (31st August) but remain an Australian citizen with diabetes management requirements.  I’d appreciate some help/advice on this matter as soon as possible please.
(copy of email to NDSS Vic as advised after a number of phone calls, and their response)
So… I guess I’ll just have to keep waiting…

Update 4 (8 August)

A slightly more informative response from Diabetes Australia, but still a blanket no, unless: “if you were overseas as an employee of the Commonwealth, where product can be delivered to a consul or commission”

Good Morning Annabelle

Thank you for your email. Diabetes Australia administers the NDSS on behalf of the Australian Government. This includes oversight of product supply and implementation of limitations that apply to the provision of NDSS products as a Commonwealth program.

As you have outlined below,  you will be leaving Australia for a period of 12 months from the close of August and will be required to exit Australian territories with the medications and consumables to manage your diabetes.

All Australian citizens are able to exit Australian territories with a maximum of 6 months’ supply of medication or consumables as provided by a Commonwealth program, such as the NDSS or Pharmaceutical Benefits Scheme (PBS). Once you leave Australian territories, you are unable to access the NDSS or PBS whilst overseas. The only exception that would apply is if you were overseas as an employee of the Commonwealth, where product can be delivered to a consul or commission.

In your circumstance you are able to exit Australia with the maximum 6 month supply of NDSS items as outlined by the Australian Government.

There is no provision or allowance for a greater supply of NDSS items. This will equate to the following maximums:

  • Blood Glucose Test strips –  900 strips (9 x 100 pack)
  • Insulin Pump Infusion Sets – 9 boxes (90 units)
  • Reservoirs – 9 boxes (90 units)

If you have any further questions, please contact myself or my team directly.

Regards

Darren

Update 5 (10 August)

Well, it’s about time this saga came to a close!  I had a most informative talk today with Dr Bob Cass, my sending organisation’s chief medical adviser.  Apparently he has been fighting for such cases for years and the government bureaucracy stymies any efforts to make any changes to the system, for any (legitimate) reason.  So now I know, that our government will not allow more than 6 months medical supplies to be obtained by any Australian citizen/taxpayer, which has the following potential impacts:

  1. Anyone with a chronic condition that requires ongoing medical intervention/treatment is effectively prevented from volunteering/working/travelling overseas for more than 6 months at a time;
  2. Is put in a position where they may cut/alter/change/stop medication because it is either unavailable or unaffordable to obtain;
  3. Risk their long term health outcomes and potential need for emergency care or evacuation back to Australian Health care providers;
  4. Break the law by ‘doctor shopping’ and filling prescriptions in different locations;
  5. Stockpile medications in any way possible;

Next stop, my local Member of Parliament….

Final Update  (19 August)

Best advice?  Stockpile.  Eke it out.  Get as much as you can to take with you.  Use as much of the insulin as you can get out of the vial.  With the pump, extend to 4 days per change if possible.  Other meds – maybe I can halve my dose to last double the time.  Maybe I can buy some things in Thailand.  Maybe I can get any visitors to bring some supplies with them.  Or hey, self fund a return trip to pick up my next entitlement in 6 months time – an expensive and really quite unnecessary option.

But overall, none of this is ideal.  I am forced to play with my health in order to ‘serve the country’, as per Australia’s overseas aid contribution, for 12 months overseas because our health system will not allow for any reason to obtain more than 6 month’s supply of medication (or pump supplies).   In the long run, I suppose Medicare will pick up the bill for any long term health consequences.  Doesn’t make a whole lot of sense to me.

Updating TEFL/TESOL

 

The last time I taught English to Speakers of Other Languages (TESOL) was in the early 2000s – after qualifying I taught adults, youth and children English in a range of contexts.  Adults who came as refugees and wanted English for survival, English for further study, English to rebuild their lives in a foreign country.  I taught youth who needed English language skills to complete their schooling, to improve their prospects, to access the opportunities available in Australia and the wider English speaking world.  I worked with children who were struggling with the expectations (and too often ignorance) shown by teachers who expected them to know the same world (and ways of thinking/knowing) that all the other kids were familiar with having grown up in an English speaking country.

So I have been a bit concerned about ‘updating’ my knowledge as to what might have changed since this time in terms of what and how to work with those for whom English is an additional/other language.  I’ve asked about ‘new’ ideas, strategies, theories, techniques.  And I’ve been shown (basically) the same materials and theory that I learnt in my TESOL studies of the 1990s.  I went to the library and checked out the resources.  For goodness sake, what has changed?  Where have we got to?

Since I was a TESOL practitioner, I have worked in Curriculum and Pedagogy.  My initial TESOL training has been crucial to my pedagogical approach – that is, learners are all different, learners all come from a particular time/place/context/background.  I took on a critical perspective – English as an ‘international language’;’formal’ English as a tool of discrimination and of imperialism; English as communication over accuracy; literacy skills being quite different from English language skills; and the importance of languages other than English in terms of identity and culture.  Good pedagogy is about effective communication across differences, and no single teacher will be the one to succeed with every student individual.

Constructivism is a concept that not all educators will align themselves with.  But for me, constructivism means building on what one already knows.  Learning a foreign language is about building on what one already knows – learning other ways of expressing what you know, and using this as a form of communication.  Learning through doing, learning through play, learning through purpose and shared interests – is this so radical?

Maybe I’m deluded, but I can’t see a whole lot of ‘new’ out there in TESOL/TEFL land.  Love to know what others think…  And of course, look forward to seeing how my ideas might go down in Laos… First I have a lot of listening/observing/reflecting to do…  I’m recording my thoughts here for the purpose of revisiting this once I become immersed…

Boxes crammed with Stuff – the Stuff that memories are (were?) made of.

DSC_0054I was born in the 1960s, schooled in the 1970s, higher education in the 1980s, art/media, 1990s, education, TESOL, Masters … 2000s, PhD … skip to 2016 – and I am packing up my past (yet again) to get away.  Boxes and boxes of my study, my resources, my ideas, my research, those articles that really meant something to me, all of that work I put in, notes, ideas, revelations!  My 20 year old son – get rid of it mum, you don’t need it, when are you ever going to look at it again?  The simple revelation, that the internet came along somewhere during that time, that obsolete storage devices that held such significant material can’t even be accessed anymore (remember, VHS, floppy disks – even CDs are considered obsolete), that there is no need to keep ‘hard’ copies of anything anymore, and yet I can’t bring myself to let them go.  Not without a fight anyway!

So sorting through these boxes – crammed in every space – and each item bringing back a memory of what it meant at the time.  Teaching ideas – both theory and practical, so important to me, and the product of so much work.  The dilemma of a newly minted teacher – ideas of what to teach, how to do it, how to engage my students – surely I could use that again, next time I’m stuck for ideas?  Another word of wisdom from my son – these are what you did with what you know – you still know it, you know even more now, so what good are they?  Let go!

How do you shift a mindset that has been subsumed by technological innovation?  I still love my old photo albums, my record collection (I think I can manage to get rid of all the old cassettes now) and all those old memories, the journal I kept from the age of around 13, the letters my friends and I used to send each other – as often as emails/facebook messages – the newspaper clippings, the old magazines, posters, the memories!  Are they, as my son says, still there, but built into something else with everything that has happened since?  That these concrete memories are obsolete and just taking up unnecessary space?

Lao Police Publicly Confirm Arrest of Trio of Workers For Criticizing State

Authorities announce the detention of the three following their forced disappearances earlier this year.

Source: Lao Police Publicly Confirm Arrest of Trio of Workers For Criticizing State

  1. Link to original Article: Radio Free Asia – Lao news in English

    [IMG]
    Lao police have publicly acknowledged that the arrest of three Lao workers who returned home from Thailand to renew their passports for the offense of criticizing the government and the ruling communist party via social media while abroad.

    Somphone Phimmasone, 29, his girlfriend Lod Thammasong, 30, and Soukane Chaithad, 32, disappeared after returning to Laos earlier this year to renew their passports, their family and friends told RFA’s Lao Service in a previous report.

    “Special police forces suppressed a group of bad people who have campaigned to accuse and condemn the direction of the state and party through Facebook,” the Ministry of Public Security and police announced on a state security television channel on Wednesday.

    “It’s true that the three of them were arrested,” a policeman who works at the TV channel told RFA’s Laos service on Friday.

    “They were at the press conference which was held only for the state security TV channel and newspaper yesterday,” he said. “Other media were not allowed to cover the event.”

    The security channel showed the three making what appeared to be public confessions. They apologized to the communist party, government, Lao people and their relatives for making the mistake of getting involved with the group that protested against the country’s policies.

    “For me, from now on I will improve myself, change my ideas, not go against the government and not be traitor to the country,” Somphone said..

    He also said that no authorities or agencies had threatened or coerced him into speaking to the press at the conference.

    “We admit our mistake,” he said, speaking on behalf of the other two at the end of the press conference.

    Apprehended for political campaigning

    Police arrested Somphone and Lod at her home at Navatai village of Nongbok district in central Laos’ Khammouane province on March 5, said a relative of the couple, who declined to be named, in an earlier report.

    Police initially told the couple’s relatives that the pair had been arrested for drug possession, but two weeks later the policeman in charge of the jail informed them that they had been arrested for political campaigning.

    Somphone and Lod were being held in the province’s Khamkhikai jail as of April, but later the police told their families that they had transferred the pair to the capital Vientiane for detention, the relative said.

    Soukane Chaitad disappeared on March 22 while he was renewing his passport at a police station in Savannakhet province, south of Khammouane, according to his wife who now works in Thailand.

    Police denied seeing him there, although a witness told his family that someone drove off with Soukane in a truck after he had arrived at the station, she said.

    While working in Thailand, the three strongly criticized the Lao government on social media for its human rights abuses and lack of democracy, sources told RFA in an earlier report.

    They and some friends also protested outside the Lao embassy in the Thai capital Bangkok on Lao National Day on Dec. 2, 2015 calling on the Lao government to respect human rights and democracy, they said.

    Reported by RFA’s Lao Service. Translated by Ounkeo Souksavanh. Written in English by Roseanne Gerin.

Living with diabetes type 1

Do you want to know something?  Living with diabetes is a pain in the arse.  I’ve had 40 years of it – it is one of those ‘hidden’ disabilities, it is just there, always there, always impacting on how I feel, what I can do, even how I think and behave.  It is not just a physical thing, it affects my brain – I can’t ever ‘forget’, it affects my moods, my competence, my confidence and even the words that come out of my mouth.  I fill out a form – do you have any disabilities?  No!  I am as competent as anyone.  More so in fact, because I have a hidden disability that I have to deal with every day.

At the age of 11 I got this damned thing.  I went through my teenage years denying it – don’t treat me any different!  But if you were told, at the age of 11, that if you don’t follow the rules and look after yourself, you are likely to end up blind, lose your feet, on kidney dialysis, would that suddenly make you ‘behave yourself?’  Or perhaps goddamned it, I’m going to live my life to the fullest and fuck living for a long time, I’m going to live for a good time?  And then you get caught up in a car accident at the age of 13 and your life is fucked anyway, and if you live until you’re 30 then you’re doing damned well?

Jeez, and people wonder how I turned out the way I did.  I am.  And I’m 50 now.  And I’m off again to challenge the naysayers of 1977.  I have my sight, I have my feet, my kidneys are doing fine.  I’m in the process of trying to get enough medical supplies to last me the year I’m away.  Anybody would think I’m the first and only person ever to have asked!  I know I will have a massive supply of medication to take with me, yes, diabetes and all its complications are a pain in the arse!  But it will not stop me from doing what I want to … need to do.

diabetes-type-1-and-2-differences
Know the Difference!