Personal Health & Wellbeing – surely it takes precedence?

Today I was sitting in my Lao language class and I realised that I’d forgotten to reload my pump (insulin supply) and it had run out.  I was running on empty.  I mentioned this to my colleague Susan, who has been fully briefed on potential issues for a diabetic and she said – you must go now and fix it up.  Thank you Susan.

Wow.  I thought about how many times I’ve sat in classes, meetings, doing busy work or whatever situation – even socially with friends, colleagues etc., and put my own (diabetic) needs last.  No I can’t let my diabetes be an inconvenience to others, I must keep going and then when I do get the chance to fix things up, I deal with the consequences on my own.  The soaring out-of-control blood sugar levels, the ‘hypo hangover’, the difficulties in getting the body into catch up mode.  The panic and distraction of trying to work out where I might get a syringe from, how I might get my levels back under control, how I might get home myself to access my supplies.  And I’ve done all this on the quiet because I never wanted to bother anyone!  I didn’t want my ‘problems’ to become other people’s problem.

So after 40 years of having diabetes, for virtually the first time I have been given the permission to prioritise my health and wellbeing over everything else.  I have a whole action contingency plan (under medical insurance) so that if I need to get specialised help, I will.  Other people who might be able to get me over the boarder to Thailand or to better health care have been briefed.  I have a whole team that is actually at the ready to take care of my health needs if it became necessary.

After a life of ‘looking after myself’, and not wanting to bother anyone with my condition(s), and never wanting to appear to be any more helpless than anyone else (when in actual fact I have virtually never taken time off work due to my chronic condition(s) – no work/no pay being partly the reason!), I have finally found my self in a position where I feel entitled to put my health and well-being needs first.  And this is as a volunteer in a developing country.  What is wrong with our ‘first world/Western’ mentality that it has taken me this long to feel that I can?

A #T1D Diabetic in Laos for a year

Diabetes is damned hard work and a persistent pain.  It can be hard enough moving to a new country, new language, new ways of understanding the world, and new food options, without the blood sugar levels (BSLs) going completely  and utterly crazy!

I managed to travel with no problems carrying a whole case of medications as hand luggage (+helmet, +laptop, +essentials).  The case was only checked once in Bangkok, by a very efficient airport official who checked through and opened some packets with her rubber gloved hands.  I had my explanatory letter ready and it really was no problem.

When I got to the hotel I filled the bar fridge with my insulin and other items needing refrigeration, and let the staff know not to turn the fridge power off.  Still living in (another) hotel I haven’t yet been able to properly unpack and consolidate my supplies so I still don’t really know what I’ll run out of – but as per my earlier post #T1D diabetic supplies for a year  I know I will.

So my blood sugar levels and insulin requirements have plummeted since arrival.  I try to surmise why this might be, and whether it is transient, or more longer term.  Some possible reasons:

  • Constant state of excitement and joy!
  • Low level but constant underlying stress
  • The heat and humidity
  • Food – eating less, and changes in diet
  • Beer Lao – insulin replacement therapy?
  • (Slightly) more exercise, exertion

Really though, it could be anything!  Hormones?  Body trying to cure itself?  …

So being on an insulin pump, where I have a constant set basal level of short acting insulin, onto which I would bolus a dose if I eat carbohydrates, or to correct a higher bsl, I have already lowered my basal (24hr dose) from 20 to 17 units of humalog, and hardly bolused at all, even when I do eat, because my bsl is already too low.

To cut a long story short, I need to constantly monitor my bsl using my meter and my precious supply of blood testing strips – of which I was only permitted to order 11 boxes from NDSS when I left Australia.  So the saga continues and I’m still pissed off about it – that my short and long term control over my health is hampered by my own country’s medical system that would not allow or assist me to get the supplies I needed before I left.  Again, still a work in progress … T1D and its persistent struggles …

 

#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.

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!