Jewelry

March 4, 2008

In my spare time I make jewelry. Below are some of the items I have made.




I have set up an online shop on Etsy.com – http://www.etsy.com/shop.php?user_id=5531251.

Please have a look at these and other items in my shop. I will also happily custom make items on request.

While you are looking please remember that every item purchased will help us pay for James’s medications! :-)

Thank you!


Project 365: Australia ~ 17th February (day 109) – 1st March (day 122),2008

March 2, 2008

Day 109 – 17th February, 2008

Today’s photo is of Orange Juice poppers. These are also part of our hypo stash.

It may be ‘Just Juice’ but it’s not JUST Diabetes! There is no cure.

Day 110 – 18th February, 2008

Today James had an appointment with the ophthalmologist. We have been waiting for this appointment since August 2007. After waiting 30mins we were ushered into an examination room. The Dr had James read an eye chart, had a quick look at his eyes, then put dilating drops in his eyes and sent us back out to the waiting room. We waited another 20 mins before James’s name was called again. The Dr tried to look into James’s eyes with a light but had difficulty due to James’s photophobia. Finally we left after being told that James has bad eyesight in his right eye, corneal scarring and no sign of diabetic retinopathy ‘that I can see’. James and I weren’t impressed by the lack of answered this appointment gave us about James’s eyesight worsening and his eyes becoming more and more sensitive to light. So we stopped at the optometrist in Ulverstone on the way home and I made an appointment for tomorrow.

Diabetes takes up your time. There is no cure.

Day 111 – 19th February, 2008

Today we visited the optometrist. He said that the corneal scarring was also called corneal dystrophy and could be part of APECED (even though he had never heard of it – just guessing form the dystrophy part of APECED). He also said that James’s eyesight was lower than the legal limit for driving a vehicle without glasses. We ordered two pairs of glasses on our way out – one pair of normal glasses and one pair of prescription sunglasses.

Diabetes and APECED affects your eyesight. There is no cure.

Day 112 – 20th February, 2008

Today’s photo is our noticeboard which is covered with business cards for doctors, scripts for medications, letters for future doctor and specialist appointments.

Diabetes is complicated. There is no cure.

Day 113 – 21st February, 2008

Today’s photo is of a table of the components of APECED. Since the optometrist visit on the 19th I have been looking up information on APECED and eyes. I have discovered that keratopathy (corneal dystrophy) is part of APECED, and after emailing other people with APECED I have discovered that most people develop keratopathy early in APECED. This means that in this case James is actually lucky to have not developed this condition until now. In my searching I also found an article that said that most people with APECED have only 3 to 5 of the 15 possible conditions – James has 10!

Diabetes is the hardest part of APECED. There is no cure.

Day 114 – 22nd February, 2008

Today we went to City Park in Launceston and saw the monkeys. I took a whole heap of photos and I love this one.

Diabetes is a balancing act and often feels like you are walking on a rope. There is no cure.

Day 115 – 23rd February, 2008

Today is James’s 24th birthday. James’s Mum arrived yesterday for a 4 day visit. Today’s photo is of James and his mum. James is now getting nagged by two people J.

Diabetes involves the whole family. There is no cure.

Day 116 – 24th February, 2008

We went to Wings Wildlife Park in Gunns Plains today. I took this photo of James with a donkey. Yes – that is a handbag on James’s shoulder, and no – it isn’t his. I was having trouble carrying my handbag and taking photos so James was in charge of my handbag. At least half of the items in my handbag are for James hypo treatment so it gets quite heavy anyway.

Diabetes is a burden. There is no cure.

Day 117 – 25th February, 2008


Today’s photo is of James eating some condensed milk out of the tube (there was only a tiny bit in there) at the same time as entering the amount of carbs that were in it into his pump.

Men with diabetes HAVE to be able to do two things at once J. There is no cure.

Day 118 – 26th February, 2008

James had a CT scan of his back done today. We have to wait until the 28th to find out the results from the doctor. More time was spent in waiting rooms today.

Diabetes makes you spend lots of time in doctor’s waiting rooms. There is no cure.

Day 119 – 27th February, 2008

Today as we were about to head out the door to do some shopping, James checked his level – it was 3.1mmol/L. James had no symptoms of being low. We had to wait and treat the hypo before heading out – and James had a headache to accompany him when we finally left.

Diabetes makes you wait for it. There is no cure.

Day 120 – 28th February, 2008

day-120.jpg

Today we picked up James’s glasses. He has had a headache since wearing them as his eyes have to get used to them.

Diabetes is clearer with glasses – but no easier to handle! There is no cure.

Day 121 – 29th February, 2008

Today I have two photos. The first photo is of my handbag with the orange Glucagon Hypokit showing. The other important thing in my handbag is the black thing in this first photo – which leads me to the second photo.

This photo is of the Addison’s emergency kit I have made. It contains a syringe, needle and the solu-cortef package, all kept together in an old sunglasses case. I take these two potentially lifesaving kits with me everywhere I go, which means I now have a bigger handbag than I used to have!

Diabetes dictates the size of your handbag. There is no cure.

Day 122 – 1st March, 2008

Today’s photo is of James lying on his back on the floor – a common position for him since his back injury.

Diabetes is most likely prolonging the healing of James’s back. There is no cure.

________________________________________

And that finally brings me back up to date!!! :-) I will try and post photos more regularly now – not just take them and forget about them!!


Project 365: Australia ~ 1st February (day 93) – 16th February (day 108),2008

March 1, 2008
Day 93 – 1st February, 2008

Today we got a free diabetes sick day kit in the mail from Accu-Chek. It contains a box of ketone urine test strips, a thermometer and information on what to do on a sick day.

Diabetes involves planning for the worst and hoping for the best. There is no cure.

Day 94 – 2nd February, 2008

Today’s photo is of a tube of the raspberry glucose tablets I ordered from America. These tablets are so good I have to stop myself eating them like lollies! A few of these tablets when James is low will increase his blood sugar levels – and taste good while they do it! The tube is a perfect size for James to keep in his pocket so he can have them with him wherever he goes.

Diabetes makes me search endlessly for easy ways to raise blood sugar levels. There is no cure.

Day 95 – 3rd February, 2008

Today’s photo is of the medication box in our fridge. This box holds James’s insulin, florinef and a spare glucagon kit.

You have to make space for diabetes in every aspect of your life. There is no cure.

Day 96 – 4th February, 2008

James and I were looking through his old photo album today and we came across a page with a pre-school photo of James and a hospital bracelet in front of it. This was pre-diabetes but it made me think about how many children there are in the world who are hospitalised due to diabetes and how many adults there are who have similar pages in their photo albums.

Diabetes infects memories. There is no cure.

Day 97 – 5th February, 2008

We did eventually get our house on the market, despite having to cancel meetings due to James being sick. Today’s photo is of the ‘For sale’ sign on our fence. We are moving closer to friends who will be able to help me maintain a job by being able to check on James if I’m not home. We love where we live, but need to move.

Diabetes makes decisions for you. There is no cure.

Day 98 – 6th February, 2008

James has started having Powerade to help with maintaining his hydration and electrolytes. I have learnt through the Addison’s disease email support group that electrolyte drinks are important in maintaining health for those with Addison’s.

Addison’s disease makes diabetes hard to control – anything we can do to control Addison’s can help with diabetes control. There is no cure.

Day 99 – 7th February, 2008

James now has 4 mg of hydrocortisone at 2.30pm for his Addison’s. If he doesn’t have this extra medication his cortisol level drops and then his blood sugar level will drop uncontrollably. Today’s photo is of James’s watch – he has an alarm set on it to remind him to have this tablet.

Surviving diabetes depends on remembering to take medication or check levels at the correct time. There is no cure.

Day 100 – 8th February, 2008

We are hoping to go camping when James’s back is better so I got out the tent to check that everything was in order. When I opened up the tent I found the foil from a blood glucose strip.

Diabetes ends up in all parts of your life. There is no cure.

Day 101 – 9th February, 2008

James and I decided to go on a road trip. This photo is of the esky we need to take with us on holidays to hold medication which needs to remain refrigerated. We also needed to take spare tablets and pump supplies, as well as emergency injections for both Addison’s and diabetes.

Diabetes adds to your luggage. There is no cure.

Day 102 – 10th February, 2008

This is a photo of James enjoying a coffee at Port Arthur historic site, before we headed off on a night time Ghost Tour. We had to ensure that James had had enough food to cover the 1km walk (and scares) of a ghost tour!

Diabetes takes away the spontaneity of life. There is no cure.

Day 103 – 11th February, 2008

This is a photo of James and I on the Tahune airwalk. At this point we were approximately 37m high – for once James and I were as high as each other!

Diabetes makes you laugh at silly things. There is no cure.

Day 104 – 12th February, 2008

We had to complete a site change on our trip as James woke up with ketones in his blood. This is a photo of all the equipment needed for this site change. Once we packed and got into the car, James spent the next two hours asleep while I drove.

Diabetes never takes a holiday. There is no cure.

Day 105 – 13th February, 2008

A few weeks ago we were in a camping shop and I saw some picnic bags. Since diabetes is always on my mind I suddenly had an idea. When we got home I got our picnic bag out of the cupboard… and made it into a hypobag. The benefit of using the picnic bag for a hypobag is that there is an insulated section for medications and we can place a freezer brick in it to keep them cold when we need to.

Diabetes causes inventions. There is no cure.

Day 106 – 14th February, 2008

Today’s photo is of James’s fat tummy! To most people I’m sure this won’t look like a fat tummy but to us it is and it’s good! In 2006 James had a problem with his liver. No one was able to work out what was wrong but he lost a lot of weight (was about 55kgs at his lightest), ended up in hospital and then one day just got better. It has taken a long time to fatten him back up again (he is now about 80kgs) as high levels can make his body break down fat for energy.

Diabetes makes it harder for James to get fat! There is no cure.

Day 107 – 15th February, 2008

Today’s photo is of James’s meter and two boxes of strips. Each strip box costs $13.40, hopefully we can get a Health Care Card from the government soon and they will go down to $2.10.

Diabetes makes you hope for subsidies! There is no cure for diabetes.

Day 108 – 16th February, 2008

Today’s photo is of a packet of Mini Bearables. These lollies come in convenient individual packages which contain approximately 15 grams of carbs each – a perfect amount to raise sugar levels when hypo.

Diabetes involves carrying lollies (and other hypo supplies with you) and not eating them when you aren’t hypo (or you are the partner of the person with diabetes!!). There is no cure.


Project 365: Australia ~ 17th January (day 78) – 31st January (day 92),2008

February 29, 2008

Day 78 ~ 17th January, 2008

James has been experiencing dry, itchy and sore eyes for a few months now. He has an antihistamine tablet as part of his daily tablets and also uses Visine eyedrops when needed. This is just another medicine we need to keep nearby. For some strange reason – when James’s level is higher than it should be his eyes don’t bother him as much.

Diabetes is full of strange surprises. There is no cure.

Day 79 ~ 18th January, 2008

Today’s photo is of our medicine box. At least half of the items in the box are related to diabetes. Diabetes takes up space! There is no cure for diabetes.

Day 80 ~ 19th January, 2008

Today’s photo is of James’s spare infusion sets on the shelf in our laundry. Each of these boxes hold 10 sets and costs $13.20. Thankfully we live in Australia because insulin pump consumables are subsidised by the government through the National Diabetes Services Scheme (NDSS).

Diabetes is expensive – but could me much more expensive if we lived in another country! There is no cure.

Day 81 ~ 20th January, 2008

People with diabetes often have reduced circulation and therefore injuries to extremities such as feet can take a long time to heal. The worst thing I have ever had to do as an assistant nurse is change the dressing on the foot of an elderly man with diabetes. Almost half his foot was black, ulcerated and really, really stunk. Eventually he had to have his foot amputated.

Today’s photo is of James’s boots. These are his ‘trucks’ – they have steel caps in the toes to keep his feet safe. Diabetes does not just involve taking insulin – it effects every part of your body and life. There is no cure.

Day 82 ~ 21st January, 2008

Today’s photo is of our bathroom window ledge. Along with the normal toilet cleaner we have a bottle of ketone strips, which are used to measure the amount of ketones in James’s urine. Ketones are substances that are made when the body breaks down fat for energy, and in a diabetic this occurs when there is not enough insulin in the blood stream.

Diabetes involves checking more than just your blood. There is no cure.

Day 83 ~ 22nd January, 2008

I can’t tell you how many times a day I ask James to check his level, and I especially can’t imagine how many times I have said it since we met in 2004. James has trouble remembering to check his level. I issue countless reminders for James to complete tests and even have a reminder written on the desktop of my computer.

I have said it before but diabetes is repetitive! There is no cure.

Day 84 ~ 23rd January, 2008

I found these airline stickers while cleaning today. James was asleep when I found them and felt like going in and sticking the ‘Please wake me for meal’ sticker on his head! I didn’t - but I thought that it was a very appropriate sticker for a person with diabetes – especially since I often have to wake James up to eat.

Diabetes disturbs your sleep. There is no cure.

Day 85 ~ 24th January, 2008


This morning James woke up, checked his level and discovered a high reading. He bolused and rechecked a while later – still high. We pulled out his infusion site and discovered the cannula was bent resulting in James not getting enough insulin.

Diabetes is all about getting the correct amount of insulin. There is no cure.

Day 86 ~ 25th January, 2008


James and I are moving and that involves putting our house on the market. Yesterday we rang up and organised for all the local Real Estate agents to come and give us appraisals of our house. This morning James and I woke up and then James promptly threw up. I gave him his solu-cortef injection, he got back into bed, and I checked his level – it was 19.1mmol/L. I used the blood ketone test strips and discovered that he had ketones in his blood – which explained the vomiting. After making sure that James was settled, had a new infusion site, an injection of insulin and had water nearby to drink, I sat down with the phone and cancelled all the appointments we had made.

Diabetes disrupts every plan you have made. There is no cure.

Day 87 ~ 26th January, 2008

James and I went for a drive today. We ended up down a country road in the middle of nowhere. The closest shop was about 20mins drive away and was only a small general store. James was discussing how nice it would be to live in such a peaceful place. I could think about was the distance from medical help, and how horrible the midnight drives to the hospital would be.

Diabetes can dictate where you live. There is no cure.

Day 88 ~ 27th January, 2008

James has been experiencing postural hypotension lately. Today we brought an automatic blood pressure machine to help us know when James’s blood pressure is low – which occurs as part of Addison’s Disease.

Diabetes – especially unstable diabetes – makes other conditions unstable as well. There is no cure.

Day 89 ~ 28th January, 2008

Along with the postural hypotension that I mentioned yesterday James has been experiencing other things – like an inability to regulate his temperature. Today I noticed that his skin is a different colour… but I can’t work out what the difference is. It could be due to James’s liver or Addison’s disease. The temperature could be due to any other condition. It is hard to know what to do to stop these symptoms as we do not know the cause. At least with a hypo or a hyper we know what to do – whether the solution works appropriately or not.

APECED is confusing – diabetes adds to this. There is no cure.

Day 90 ~ 29th January, 2008

Today’s photo is of the side of the road taken from the car window.

Just like the horizon in this picture, the journey of life with diabetes is never straight. There is no cure.

Day 91 ~ 30th January, 2008

Today’s photo is of a 24 hour urine collection bottle in our toilet. When we visited the endocrinologist at the beginning of January she wrote a request for a 24 hour urine test to determine the amount of calcium passed out of the body. A 24 hour urine test is hard to fit into the schedule of a shift worker. At the moment however, James is off work due to a back injury he sustained at work a few weeks ago, which at least makes this easier. James’s back injury may take longer to heal than it would on anyone else due to all his conditions

Diabetes can prolong the healing process. There is no cure.

Day 92 ~ 31st January, 2008

Today’s photo is of all the bottles and boxes of James’s tablets. Once a week I sort James’s tablets into pill containers to make it easier to manage. James has 20 tablets a day, 280 tablets a fortnight, 7300 tablets a year. Including insulin this amounts to a cost of $5.34 a day, $74.81 a fortnight, $1950.40 a year. This cost doesn’t include glucagon, solu-cortef, vitamin B12 injections, syringes and needles, blood testing strips, ketone test strips, pump supplies, or eyedrops. It also doesn’t take into account the cost of times when James has to increase his hydrocortisone when sick, or when extra insulin has to be used when an infusion site fails.

Diabetes and APECED is very expensive! There is no cure.


Project 365: Australia ~ 9th January (day 70) – 16th January (day 77),2008

February 29, 2008
Day 70 ~ 9th January, 2008

Today I worked a six hour morning shift. I was really busy and didn’t get a break. I had my mobile with me and expected a message from James when he woke up at 9 but I didn’t get one. When I finally left work at 1.40pm, only 40 mins late, I was able to ring James. He wasn’t making any sense on the phone and when I asked him what step he was up to in checking his level he said “about one o’clock”. I yelled at him a few times to get up and eat but since nothing was working I told him I was on my way home and had to hang up to concentrate on driving. I completed the thirty minute drive in just under 25mins and ran inside to find James’s level was 2.7mmol/L.

Diabetes can increase the chance of a speeding fine and demerit points while you are rushing home to revive a loved one. There is no cure

Day 71 ~ 10th January, 2008

Late last night James’s level went up. And up. And up. He also had a slight temperature and an infection on his gum. After we discovered ketones in James’s blood we headed off to the hospital. We arrived at 2.30am, got ushered to a bed, and waited.

We then had to go through twenty thousand questions about APECED with the doctor who was on, and eventually left with antibiotics. As James’s level was high he was talking non-stop which was very tiring since I was trying to drive and was ready to go to sleep!!!

Diabetes causes midnight hospital trips. There is no cure.

Day 72 ~ 11th January, 2008

This photo is of me filling James’s insulin reservoir for his pump. The pump can hold 3mls of insulin which is 300 units. This clear fluid is responsible for keeping James alive.

Diabetes is fluid. There is no cure.

Day 73 ~ 12th January, 2008

Every three days I reload James’s pump with insulin and prepare a new infusion site. Each time we do this we hope that there will be no problems with the site and that the site will continue to deliver insulin.

Diabetes is repetitive. There is no cure,

Day 74 ~ 13th January, 2008

Carbi loves socks! I took this photo of him, in bed with James, sleeping on James’s sock – which he had taken into bed with him. We don’t know what it is about socks that Carbi likes but since he never destroys them we don’t mind him playing with them. Carbi was in bed as James was sleeping and Carbi always joins him, which eases my mind slightly as he does sometimes alert when James’s level goes low.

Just like Carbi, diabetes is a constant companion. There is no cure.

Day 75 ~ 14th January, 2008

This is a photo of a random page of our “Fat and KJ counter”. We have three identical copies of these books, one for each car and one at home. They contain a list of a whole heap of foods and show the exact Carbohydrate count for each food. Knowing the exact carb count allows James to tell his pump the right amount so it can correctly calculate his insulin requirement.

Diabetes involves counting – lots of counting! There is no cure.

Day 76 ~ 15th January, 2008
Today I had to go to get my boys medication. I spent $100 at the vet on Carbi’s pain medication (the pink box on the left – Carbi has problems with his knee joints) and I spent almost as much on James’s medication. This week I didn’t need any diabetic supplies.

Medication is expensive. There is no cure for diabetes.

Day 77 ~ 16th January, 2008

Today’s photo is of my Project 365: Australia posts sitting on my printer waiting to be teamed with the letters I have written to local politicians.

Diabetes involves raising awareness. There is no cure.


All about me

December 11, 2007

I have been thinking about doing this for a while (writing 100 things about myself) and then Lance did it so I thought I’d take a stab.  Good luck and if you make it all the way to the end I’ll be impressed!

  1. I am addicted to coca-cola
  2. I hate people who call me ‘dear’.
  3. I can handle being called ‘dear’ by the elderly people I look after, but I can’t stand it when my co-workers call me that and when a guy who was younger than me called me ‘dear’ I felt like punching him.
  4. I currently work in a nursing home
  5. My first job was as a babysitter
  6. When I was 15 I set up a party organising business with my friend.  We did one party before we got offered work hosting parties for a business called Kids Plaster Craft
  7. I did ¾ of a Bachelor of Education (Early Childhood Education) before I realised that I didn’t want to be a teacher.
  8. I finished with a Bachelor of Arts in Early Childhood Education.
  9. I have worked as a gardener, nanny, babysitter, party host, shop assistant, personal carer, recreational activities officer, maths tutor, uni advice line telephone operator and a party organiser.
  10. I grew up in the Blue Mountains, NSW, Australia.
  11. I am vegetarian
  12. I have a habit of naming everything – my car is named Ali, our Christmas tree is Clive, and my laptop is Cassie
  13. I blame my parents for this habit – their car is named Mob, and there was a tree in our backyard named George
  14. I love getting mail, but hate the bills.  When I hear the postie I run to the letter box.
  15. I used to have 27 penfriends but don’t talk to them anymore
  16. I love teddy bears.  I have an extensive collection
  17. When I was little I had a Raggedy Andy doll that I slept with every night.
  18. Raggedy Andy started getting a bit old so my Mum got our neighbour to make me a new one to replace him.  I, however, had a different idea and to this day I still have ‘Old Andy’ and ‘New Andy’
  19. I still sleep with a teddy every night.  His name is Nicky and he is now 10 years old. 
  20. I have a confusing family – my brothers are fostered, one of my ‘sisters’ is actually my cousin and I have a number of nieces and nephews I’m not really related to.
  21. Talking of family, my older sister and I have often been mistaken as twins
  22. I love playing Playstation games and my brothers often used to ask me to get them past levels for them
  23. I studied three unit computers at school – I was the only girl in a class of five
  24. This didn’t bother me except that the teacher made a point of it
  25. I went into my three unit computers exam thinking I would never have to be an example again.  My kindy teacher was the exam supervisor and said to me “Elizabeth!  It’s nice to see you are doing your part for the females”
  26. My middle name is Thérèse
  27. Which means that my initials are E.T.Y
  28. I was often called E.T. by my family
  29. James’s nickname for me is Lilly
  30. This is because when I was little I called myself “Lilabet”.  Queen Elizabeth also called herself this when she was little
  31. My adenoids had to be removed when I was four.  I refused to go home after the operation until I had had the ice cream and jelly I was told you got when you were in hospital
  32. I had a growth removed from my ankle when I was 17
  33. These are the only two operations I have had
  34. James and I organised our wedding in two months after my sister decided to go to China and we wanted her there
  35. The worst part about this was shopping for a wedding dress when I had a cold, a red and runny nose, and felt very unattractive
  36. We found my wedding dress the first day we looked
  37. James was in hospital the week before our wedding
  38. We got married in the backyard of the house I grew up in
  39. Mum and Dad are going to be selling that house next year
  40. Up until this year I was a chocoholic
  41. I am now allergic to chocolate
  42. I knew this was only a matter of time since my Mum, Dad and sister are all allergic to chocolate
  43. But I still miss it
  44. I am allergic to a number of other things – the worst being eggs, tomato and bee stings
  45. I can’t ever just watch TV, I have to be doing something at the same time
  46. I have always been like that and I used to do maths when I was in primary school while watching TV
  47. As a result I am quite good at maths, and was a maths tutor for a while
  48. At the moment I’m watching Numbers, so maybe that’s why I’m talking about Maths!
  49. I made the best lasagne in the world tonight – James agrees
  50. I have always liked the name James
  51. For some reason most watches I wear end up with chipped glass.  The strange part is that the chip is always on the inside.  My sister and Mum have problems with watches going slow when they wear them
  52. I am the youngest in my family
  53. I always wanted to be like, and do things with, my sister and my brothers
  54. When I was a toddler, my sister and Mum used to do craft things I was too young to do while I was having my nap
  55. When I woke up they would say “Here comes trouble”
  56. I often have people say that to me even now
  57. I first became and Aunty when I was 9 and I am closer in age to my niece than to her father (my oldest brother)
  58. I learnt to drive in a Morris Minor
  59. I drove my Pop’s Sigma until I hurt my wrist at work and was unable to steer it
  60. In 2004 I was very excited when I got a car that was actually younger than me
  61. I have a good sense of direction and find it almost impossible to get lost
  62. My sister used to be really bad at getting up in the mornings (and still is) so my Mum devised a system in which we got 5 cents if we were up by a certain time and 5 cents if we were dressed, fed and ready by a certain time.  I always ended up with 50 cents at the end of the week – which would buy me a packet of nerds.  Lou was lucky to have 10 cents
  63. James told me I had to write the following:  I am the centre of my husband’s world
  64. James is the centre of mine.  I can’t do anything without thinking about him.
  65. I am finding it very hard to think of 100 things about me but I know it should be easy
  66. I like summer because I like wearing skirts
  67. My friend once had to ban me from buying skirts because I had too many
  68. Even though I like summer I do not tolerate heat
  69. When I was a baby I had febrile convulsions, and I now get really tired when I have a fever.  Exhausted tired.  Not get out of bed for days tired.
  70. I also get the same when the weather suddenly gets hot.  I can handle slow changes, but big ones knock me out
  71. I met James while working in a old persons hostel
  72. He was one of the only males working in the hostel
  73. My friend and I used to fight over him
  74. She wanted him for her daughter and I pointed out it was impractical as she had a son called James so it would be too confusing
  75. The only contact I have with my best friends is via the internet.  Eryn lives in China, Dan in New South Wales and Kate in Queensland.
  76. I love listening to music
  77. I learnt to play the piano and I taught myself clarinet
  78. I read a lot
  79. I hate borrowing books from the library as I am really bad at remembering to return books
  80. I am an optimistic person
  81. However, sometimes the glass is half empty
  82. I smile a lot – even when I feel horrible I will smile
  83. This used to annoy Mum when she took me to the doctors about my sore foot and the would say “does this hurt?” and I would smile
  84. I got my first migraine in 2004
  85. Since then they have gotten worse, but my dog now warns me before I get them so I can take meds to stop the pain – my brain just stays fuzzy
  86. I love the smell of freshly cut grass but I don’t like mowing
  87. James ended up in hospital about 2 weeks after we started going out.  When he rang to tell me I didn’t know whether or not to believe him because he sounded fine and he had been ok the night before.
  88. The first time I stayed the night at James’s house, I woke up in the morning and he didn’t.  Luckily his brother got halfway to work and decided to come home so he was able to help James. 
  89. I still remember the look on James’s face when his brother said “what’s her name?” and pointed at me.  It was a blank look.  After he was asked a few times he said “Wizabef”.  I was very grateful he didn’t say ‘Amanda’ (his ex)
  90. I don’t ever ask James questions when he is low – I can judge how conscious he is by looking at his face
  91. I never thought that I would be able to do that
  92. I find it very easy to inject James with his B12 injection.  This is usually because he gets really irritable and cranky when it is due and I don’t mind inflicting a bit of pain on him
  93. I really do love him though J
  94. I had pet mice, fish, chickens, rabbits, guinea pigs, a turtle and a duck while growing up. 
  95. I really wanted a dog
  96. I called my mice dog names (Fido, Rover, etc) in hopes of my parents getting the hint
  97. We ended up looking after guide dog puppies as a compromise
  98. I now have two dogs
  99. Aramis and Carbi are like kids – they fight like brothers, love each other and us, want their Dad when they are scared and their Mum when they are sick
  100. James, Aramis and Carbi are my ‘boys’, and my family

November 24, 2007

We need a holiday.  Not just any holiday.  One in which we could turn off diabetes and Addison’s and allergic reactions.  We have both had enough!  Surely this run of bad luck, health-wise, has to end soon.  I’ve probably jinxed it now and it’ll never end.  All I ask for is one good day.  A day in which we have no lows, or highs, or sickness, or allergic reactions.  A day in which all the conditions associated with APECED is an afterthought not all my thoughts.  James’s knows that when I am angry, sad, stressed at/about diabetes, I’m not angry, sad, stressed at him.   He puts up with my endless questions about what he’s eaten, what insulin he had, what his level is.  I love James and he wouldn’t be who is is now if he didn’t have APECED – but lately I have been wishing every day that we didn’t know what it was!

I’m fed up tonight.  Lately I have been using a program called ArtRage 2 to draw pictures when I’m feeling like this – tonight I have no inspiration.

Some of the pictures I have drawn are below:

 bsl-bingo-jpg.jpg

 d-monster-copy.jpg

 fineline-jpg.jpg

heart-jpg.jpg

relationship-jpg.jpg

 work.jpg

I’m going to bed.  Tomorrow is a new day and tonight I can dream of our ‘holiday’, at least until the alarm goes off to do a test.


Refund…

October 15, 2007

We used to call my left foot my million dollar foot – and while Mum and Dad paid for the doctors who I saw and the tests that were done to it – I’ve decided I want a refund.


My left foot

October 14, 2007

In 1993 I started year 6 at school. Up until this point I had been lucky enough to get through my life with no major problems (although I had febrile convulsions when I was around 18 months and now get really, really tired when I have a fever). In April, 1993 we had our year six camp. This was the first sleep over camp I was able to go on, and I was very excited as I had had to choose between going on a three day trip to Canberra in year five or the year six camp.

 

Anyway, back to the beginning of that year: Mum and Dad had planned a holiday to visit my mum’s cousins with a major road trip from our house in the Blue Mountains, NSW to Brisbane and back again. As it worked out, this trip and the camp ended up being almost at the same time. To go away, meant that I had to leave camp at 11am – instead of staying until 3pm – this seemed like a fair trade-off to me.

 

On the first day of camp we had free time in the afternoon. There was a huge trampoline that everyone wanted to go on… so my friends and I ran to try and get there first. I was almost there (not coming first because I was, and still am, a really slow runner!) when I felt my ankle twist under me and I made the most spectacular dive to the ground. I limped my way to the trampoline and one of the camp supervisors rubbed my foot. It still hurt but felt a bit better – and there was no swelling so I got on with my day.

 

The next night there was a bush dance. I was dancing with Brendan, and Nathan was behind us (I’m amazed I still remember their names!). Nathan and Brendan were trying to kick each other in the back anytime they could. So it wasn’t really dancing, more getting thrown around as Brendan tried to inflict pain on his friend. Suddenly, once again, my ankle twisted under me and down I went. This time I got to sit out the bush dance (which is something I wanted to do in the first place) with my foot elevated and an ice pack on it. Still no swelling so after the dance, we all went back to the cabins and went to bed.

 

The next morning was the morning I was leaving at 11am. We had a talent show that morning and my friends and I had been working on a dance to preform. Halfway through the dance, my ankle went again and down I went.

 

I hobbled to the car when Mum and Dad picked me up and sat in the van with my foot up on the ledge behind the drivers seat. We travelled to Tamworth and then onto Glen Innes the next day where we stayed with my Mum’s cousins. As my foot wasn’t getting better I was taken to the hospital where we were told that I had strained a ligament, I got given a pair of crutches and a quick lesson on how to use them up and down the corridor (I can still picture that corridor).

 

A few days later we drove from Glen Innes to Burringbar. We took the crutches back to the hospital in Glen Innes and picked up a new pair at Murwillumbah. My ankle had almost stopped hurting by this time but I used the crutches for a few more days. When we continued on our trip from Burringbar, we returned the crutches to the hospital and didn’t think anymore about it.

 

In October, 1993 I had my orientation day at high school and because of this had half the day off. After orientation I was walking down the street with Mum and my foot started hurting. I turned to Mum and said “My foot’s hurting – like it did when we were away”. No matter how much I thought about it, I couldn’t remember twisting it or hurting it in any way at all.

 

I went to the doctor and had physio but it didn’t help. I got a referral to an orthopaedic specialist. He suggested more physio and crutches to give my foot a rest – this also didn’t help. Finally in December, 1993, he suggested putting my foot into a cast for two weeks. It was a walking cast and I had a special shoe for it. After a few days my foot didn’t hurt, but my heel started to really hurt. I resorted to using the crutches again and when they removed the cast on the 23rd of December, we discovered that the skin on my heel had been rubbed raw!

 

On the 26th of December, we went to my Nana and Granddad’s to celebrate Christmas. I crouched down to pat their dog – and my ankle started to hurt again. Because it was Christmas and New Years it took a while to get another appointment with the specialist. I eventually ended up with another cast being put on the day before I started Year 7, and this time it was suggested that it stay on for six weeks and that I use crutches.

 

From then on my ankle hurt every six months and they would suggest crutches and physio before resorting to immobilising my foot in a cast. In my diary in 1998 I wrote “I have my foot in a cast again, same reason!” and also stated that this was about the eight time. I had x-rays, MRIs, bone scans, cat scans – pretty much every type of diagnostic test that they could think of. I had an orthopaedic specialist and a foot specialist (who I called the specialist specialist). I had numerous diagnoses from a tendon strain to it being related to growth spurts.

 

Throughout highschool I had a lot of trouble with bullying due to my ankle. Because I had no definite reason why my foot was in a cast I was called a hypochondriac, told that I had swapped my cast over night, I was faking it, that it was just ‘growing pain’ that I was making a big deal out of and more. I remember one girl (who I was best friends with in year two/three) used to pick on me every agriculture lesson. She would swear that the cast was on the other foot the day before, and say that I was making it all up. I hated going to agriculture because of her. One day after I had been to the specialist she started in with the same things again. When she said “what’s wrong with you then?” I replied “I have repeated strain of the ankle capsule” and her face changed. She took a step closer and said “oh, that must really hurt”. I just gave her a look, said “yeah it does” and hopped away.

 

Anyway… in 1998 I was in my specialist specialist’s office and he was about to suggest another cast when he felt something in my ankle. Finally I had an operation which removed a non-malignant growth about the size of a grain of rice from my ankle and since then I haven’t had any problems. I’ve had a hard time finding shoes, since due to the problems my left foot is a size smaller than my right (when I was younger I had shop assistants say “you poor thing” and that’s the most help they could give). I’ve also had a few twinges when the weather is changing but that’s all.

 

Until now.

 

On Friday, my foot started to hurt. I asked James if his heel was sore (as it also feels the changes in weather) and it wasn’t sore – either was my wrist (another chronic problem due to a work incident). My first thought was ‘bugger!’.

 

I didn’t do anything to start it hurting. It is still hurting today, and yesterday (after six hours at work) I could hardly walk. It’s not swollen and is hurting in the exact same place as it used to – which is a very specific spot (see pic below).

 

 

xmarksthespot.jpg

 

 

Tomorrow morning I have to get up and ring the doctor first thing to try and get an appointment – and we will see what happens.

 

I have a bad feeling about this.

 

Sorry about the lack of pictures in this post. I looked through my photo album to find some of me with crutches (and I know there are a lot) but for some reason there are none in my albums. I think that I have excluded them – but I definitely don’t remember doing this!


Self-imposed isolation

September 23, 2007


I am now in self-imposed isolation. There has been a really bad gastro bug going around the hospital and the nursing home and now I have it.

Of all the things that make James sick, a gastro bug is by far the worst! Throwing up at any time means an emergency dose of hydrocortisone, and continually throwing up means a trip to the hospital… again.

So I’ve put myself in isolation to try to make sure that James doesn’t get sick!