Friday, May 19, 2017

So it's Friday: End of the working week. It's been a hard gig writing a blog post every night after work. There's 2 days worth of dishes in the sink, but I don't care; the house is a mess, but I don't care; the dining table's covered in bills and junk mail, but I don't care It's my time, time to think and recreate myself.

Today's topic prompt from the Bitter - Sweet blog is: More than Diabetes. 

The prompt says:
Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!  

There is so much else to what I am. Diabetes does not define me. It does not own me. It does not dictate my sense of self. 
Here are a few of the things that do define, own and dictate my sense of self and who I am.

  • My love of nature and landscape
  • My family and friends
  • My professiuonal life

I am a product of my family and the friendships that have been crafted over years. They are the holder of my memories and substance on this earth. I am the mother of a wonderful, talented, kind, extraordinary human. Born two years after my diagnosis, silent witness to my early struggles to try and 'normalise' my life with diabetes. Keeper of my heart.
I am a forever gardener, a lover of nature and of being in nature, the sea and the bush are the keepers of my soul.
I am workmate, mentor, experienced advisor, producer, leader and designer of my own professional life. My professional persona is intimately connected with my private persona and is the keeper of my sense of self.
I define myself by what I can do for others. I own my actions and decisions. I dictate my path through life. 
I am so much more than that 'Person With Diabetes'. 

Thursday, May 18, 2017

Throwback Thursday: What Brings Me Down?

Living with a chronic condition or illness is not easy. 

Each and any day can bring issues with illness, medication, technology. Often the effects of unforseen swings in glucose levels can leave me weak, tired, nauseous, light headed, headachy. Finding myself caught out by failed technology or unpredicted highs or lows while at work, can bring an unwanted level of anxiety, especially if I am dealing with colleagues or external clients. At times I can feel as if I don't want to deal with any more issues. Associated auto-immune conditions each contribute their burden, the pain and restricted mobility of osteo-arthritis, the lethargy of Hashimoto's. Each condition makes day to day living a little difficult. Do they make me depressed? No. Frustrated, anxious, awkward, pissed off, tired? Yes.
There's a lot of talk about 'Diabetes Burn-out'. When I read the stories of parents who are managing children with Type 1, my heart bleeds for them. Yes, I think they definitely get 'Burn-out' and depression, and I think many other T1's do too. It's not easy and if there are other issues going on a person's life, that burden of chronic disease can be a tipping point.
Depression is something different. Depression is when you don't want to get out of bed. Depression is when each day goes by in a grey blur. Depression is when you can't be bothered showering, cleaning your teeth, eating. It's when your emotions shut down and there is no joy.
I've been depressed, but it wan't because of my chronic conditions. It was more to do with extreme stress and a loss of self-worth when I was severely bullied at work, whilst going through an extended period of family tragedy with the illness and loss of four family members over a period of 6 years, and earlier in my life when I left my marriage of 16 years. Having chronic illnesses compounded that, but they weren't the cause of it.

On reflection, living with chronic illness means there is a greater need to maintain general balance in life. Steady employment and income, a safe domestic environment, healthy relationships, access to good food, recreational activity and social engagement all help us keep an even keel when our physical health is being difficult. 

Wednesday, May 17, 2017

The Blame Game - Blog #3

My own mother said, when I was diagnosed 35 years ago,
"Ah well; fair, fat and... (forty).

I was twenty five at the time, 172 cms and 68k. I soon set her right, but it was ten years later, after I'd married, had a baby, gained my bachelor degree as a teacher and moved to a regional town in north Queensland, that the visiting Endocrinologist really floored me when he said the same thing. By then I was a little heavier, about 72k, but by no means heavily overweight.
This throwaway line of "fair, fat and forty", has so many things wrong with it, whether someone is Type 1 or Type 2. At the time I just said to him, "I have juvenile diabetes, not the other sort. I'm insulin dependent!" and he looked at his notes studiously and didn't make any more remarks. I decided that he wasn't much good as an Endocrinologist and decided not to listen to anything else he had to say. Unfortunately he was the only specialist available in that regional centre and I had no support group nearby as my family were all in another state. Fortunately, the two things I had going for me were that I was a member of Diabetes Australia, Victoria and received their magazines every month and I had a great GP who understood Type 1 (though we didn't call it that then, it was still 'Juvenile Diabetes'). I made it my business to be in charge of my own health, to read the research and keep myself informed.
If I could go back now and put words in that north Queensland Endocrinologist's mouth, this is what I would have heard on that first visit to see him.
"I've been looking at your notes and I see you have Juvenile Diabetes. What sort of information have you been given about self-management? ... Is there anything that is worrying you at the moment, regarding your treatment and your health? .... I can see from your notes that you have been doing very well so far, you've had a baby and you're working full time. Let's have a look at your record book and see if there's anything we need to fine tune." 
This is how my current Endo communicates, and he's wonderful. We actually hugged at my last appt. after a particularly good HbA1C.

Doctor Tan, if you're still alive and listening, I hope you have improved your attention to patient detail and communication!
On the whole, after 35 years of it, I'm pretty immune to ignorant remarks. If the timing is right, I use it as an opportunity to educate and get people thinking a little more deeply about how those with chronic illness deal with life, if I strike someone particularly ignorant, I just say "This is how it works. If I go without insulin for 24 hours I will be in a coma, and if I don't have insulin for a couple of weeks, I will die. If I have too much insulin and can't get food to balance it, I will be in a coma and if the reaction is severe enough I will die. That's it, end of story." It usually shuts them up.

Tuesday, May 16, 2017

The Cost of Diabetes

Since the Trump election, I have watched with growing concern, my American friends comments and fears (on Social Media) about the cost of their basic needs for living with Type 1 Diabetes.
I am appalled that people have to beg the manufacturers to get insulin, I am appalled that insurance companies can dictate which 'brand/s' of insulin and other supplies, they will cover. I feel humbled by the knowledge that our system here in Australia, whilst far from perfect, ensures that everyone can afford their basic life-saving medication, and no-one, even the unemployed have to go without access to insulin. I guess you will see lots of posts that detail the actual expenditure to access supplies here in Australia, I'm not sure you will see many that explain how the system works.
We have a system which affords every Australian two things, basic treatment and basic drugs.
The system is made up of the following parts.
1: Cover under the Medicare legislation.
This cover guarantees treatment for basic health at General Practicioners and Hospitals.
People who are employed pay a 1.5% levy on their tax to help fund this. This levy will increase soon, but not by much, considering the benefit it gives.
2: Pharmaceutical Benefits Scheme (PBS)
PBS is like a government funded insurance scheme for supply of Prescribed drugs, ie; drugs that are registered by NHS and Prescribed by a registered Doctor. A prescription or 'script' for drugs may cost $15 or more (depending on the drug). When I get a script for insulin, my doctor will write a script for about 3 months supply and it will cost me about $15.
3: Private Health Insurance, (PHI)
PHI offers higher levels of health cover - private hospital, physio, dental, prosthetics, etc. I think that most PHI costs between $1500 and $3000 per annum. They don't usually cover supply of drugs, but may offer 'gap' insurance to cover out of pocket expenses.
4: Social Security Health Care Card 
The Health Care Card is available if you are unemployed or on a very low income. It allows you to purchase prescribed PBS drugs at an extremely low cost - about $6 per prescription. So if you are unemployed and need Insulin, your doctor will write a script for about 3 months supply of insulin and you will pay $6 for that supply.
5: Extra Medicare benefits for the chronically ill
Type 1 diabetes is recognised as a chronic illness here in Australia. GP's are allowed to refer us for other treatments at a reduced cost, mental health care plans, podiatry, optometrist, dietician advice and other allied health care needs that will enhance health care for us.

All the government funded schemes only cover basic needs, insulin, syringes or pens, glucometers & strips. Insulin pumps and cgms are not subsidised (for adults) and you need PHI to be able to access them. This is slowly changing. Some years ago insulin pump consumables, (sets and reservoirs) were added to PBS and now cost me about $80 for 3 months supply. CGMs are not covered for either sensors or transmitters. Some PHI's will cover the transmitter. This situation is evolving with our government committing to supply insulin pumps for under 18yr olds, and more recently, CGMS on a limited basis (for about 4000 children, there are 15,000 T1 children under 18 in Australia).
I think that the technology is improving so rapidly, that they are taking a cautious approach to funding.

On a personal level, I believe that access to insulin is a basic human right, as should be access to any life-saving drug, including proven cancer treatments. I am also well aware that hundreds of thousands of people globally, are completely denied any access to this drug at all.

In the balance, we need to convince governments that every dollar spent on supporting our access to
premium health care, will be returned and multiplied by the reduction of the need for support for associated long term complications and by the ability of the person with Type 1 to live a full and productive life including paying taxes.