INFECTIOUS TALES

(Probably not so appealing to the squeamish – but good lessons to be learned…)

Some Pointers from a non-medical perspective:

  • Keep any open wound clean and covered when outdoors. Use your bottled water, and keep a supply of dressings.
  • Draw a circle (with pen) around any red areas. This is a sign of infection – if it is getting bigger, you have a problem.
  • Get any escalating problem seen to! Check the cleanliness of any medical help you get!
  • Don’t leave it, it is not like something back at home that fixes itself.

After too many tales of wheelchair bound travellers returning to Australia for treatment of infected wounds in the tropics (hey Kyra, hey Nik) I never wanted to get to that stage.  So when I fell over a drain (no I wasn’t drunk… see future post for the state of the footpaths in this region…) and grazed my leg, I made sure to clean it thoroughly and report it to my ICM (in country manager – for ‘just in case’ insurance purposes).

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The graze seemed ok and I covered and kept it clean, although was a raised lump underneath that wouldn’t go away.  After a few weeks I thought I’d better get it seen to.  I happened to walk past a clean looking medical clinic whilst away in Pakse (we’ve been warned not to get treatment for anything serious locally – I’ve visited the local hospital and can vouch for this!)  I went inside and surprisingly the guy at the desk had some English and took me in to see the doctor.  Again, minimal English but he ordered a blood test to check for infection, and sent me off with the nurse (who had no English at all).

She was good, laid me down on the bed and began work.  She cleaned it.  Then she dug a hole in it.  (youch).  She put what looked like a metal scone tray under my leg. Then she squeezed it.  (oooouuuucccchhhh).  Hard.  And harder.  I could feel something running down my leg and sat up to see … (bluuurrrrrgggghhhhh).  Well it was mostly blood.  Coagulated blood.  And clear fluid.  She made me lay back down AND KEPT ON SQUEEZING as hard as she could.  By that time I was biting into my finger and making little yelping sounds.

The big lump under my skin was not quite so big by the time she stopped squeezing, but she hadn’t finished yet…  She kept on saying, encouragingly, what I thought was ‘saep lai’ – which in my limited Lao means ‘It’s very delicious’!  Couldn’t be, surely?  (Later I checked my dictionary, the word for ‘infected/inflamed’ is ak-sayp – I’m guessing this might have been what she was referring to…)  By that time I was saying no, no, that’s enough!  I then watched her as she took off her sterile glove and began cutting a strip off it.  I think I must have been distracted by more pain as she worked away and was utterly relieved when she covered it up and let me go.  The doctor wanted to know how to spell ‘divorced’ and was very happy at learning a new word in the form filling exercise, and sent me off with a warning that it needed to be checked again the next day for more cleaning and signs of spreading of infection.

Back at the hotel the next day, after letting my ICM know, and him putting all resources into immediate action, I was waiting to be picked up by a car that would take me back to Savannakhet to pick up my things before getting to a place with more medical help.  My friend and colleague (working in Pakse TTC) was with me and I thought I’d better check the wound and wash it down, and re-cover it (the nurse’s handiwork with a bandage had actually fallen off as I was walking and it was looking like a right old mess).  So I poured some bottled water over it and wiped around it to make sure it was clean.  I noticed a little bit of white stuff on the sore part, maybe a bit of stray bandage, so I pulled on it.  Poor Debbie was my witness as I pulled out about 10cm strip of plastic sterile glove OUT OF MY WOUND.  (gulp, eeerrrrgggghhhhh)

OK, get over it, driver was getting impatient so cleaned and covered it again and got into the car.  The driver also had no English – he was not the regular driver, and I realised later when we were driving around lost in Savannakhet that he had no idea where to go.  The trip that took the bus 5 hours was done in about 2 ½ hours.  We passed every vehicle (and animal) on the road.  He drove like a mad man.  He refused to stop for anything, even though I was hanging out for a smoko.  When it started getting dark (about 5.30pm) I could see why he was in such a hurry to get on the way.  All those obstacles on and beside the road – bikes with no rear lights (often they ride with no front light on either, and on either side of the road), slow vehicles, cows, goats, dogs … bad enough in the daytime – far worse at night and in a hurry!

Well, made it home ok – forgot to mention the other complication, my phone had broken, being Sunday the shops were closed, my (work) computer is a dud and won’t let me get online, so I was also relying on other people with phones…  Thanks to Debbie in Pakse, and Susan in Savannakhet, and David (ICM) for his initiative, all things were put into motion.  Finally home I packed my bag (medications, passport, clothes for a few days) and managed to make contact with the medical insurance company and send them the latest photo of my wound.  I seemed to remember in the case of an infected abscess a few years ago (another joy of diabetes) that it was useful to draw with pen around any swelling or redness so hence the artwork around the wound in the photos.  Luckily it didn’t seem to be spreading or swelling up further.

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The next day the medical insurance people were still umming and ahhing about whether or not they’d cover me for a trip to a decent medical facility.  They decided yes at about 3pm and I headed straight off to airport for the ‘4pm flight’.  By that time the last plane was fully booked and I was put on standby – first they just said no, then after talking with David on my new phone (I’d been busy that morning – new phone but almost completely broke) said they would know by 6pm if there were any ‘no-shows’, and hence a seat available.

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The Airport Viewing Lounge
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The beer Lao – locked away.

At 6pm, after hovering around the sales office for 20mins, they asked me in, took my passport, looked at the computer and I got the ‘computer says noooooooo’.  Sorry?  No!  Look, I need to get to the hospital (big sad face).  Some more tap tap tapping on the computer and it seemed that one seat had appeared out of nowhere, and it had my name on it!  Phew.  Flew out on the 4pm plane at 6.30pm, surrounded by empty seats.  Huh?  But then we flew south to Pakse and got off the plane to pick up the rest of the passengers and sure enough, it was full to brimming!  Onwards bound, north to Vientiane, and taxi to good old familiar Alie and Hotel Lao.  And my Korean friends at the nearby restaurant who still remembered me from 6 weeks ago and invited me to join them.

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Set off to Australian Embassy Clinic the next day.  Dr Michelle is a breath of Australian speaking fresh air.  I love her!  And she speaks the Aussie Lingo!  Even if she does make babies cry (the previous patient was there for her jabs).  She congratulated me for coming in and having it seen to, and commented that the Pakse Clinic had actually done all the right things – blood test, cleaning out the wound and keeping the wound open – hence the rubber glove trick.  Put me on antibiotics (Augmentin Duo), took a swab to check what the infection was – ie what antibiotics would work – cleaned and covered it, and asked me to come back so she could check it the next day, and then for reassessment on Friday.

It is now Wednesday, and she is pleased with progress.  Still oozing, still red and inflamed, but getting better!  So fingers crossed that the wheelchair will not be needed in my case!

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After a number of checkups and some good times in Vientiane (luckily I only had a sore leg, no other symptoms) I was declared fit and ready to travel on Tuesday.  Unfortunately no flights to Savannakhet until Saturday so this little trip for good medical intervention turned into quite a long stay away from my home and workplace.  I have learnt some more lessons along the way and had rather an eventful two weeks.  Left work on Wednesday October …. Headed for Pakse  (see Pakse and Beyond post) and returned to work itching to get going on November …….  Wouldn’t want to be in a hurry!  (Luckily I’m not…)  Bor Pen Nyung (it’s ok…)

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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
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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!