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

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

Home

James came home today. They wanted to keep him in to see the diabetes educator, but they couldn’t see him until tomorrow so we convinced them to let him come home.

However, as with all trips to hospital, I felt compelled to write the following complaint/suggestion to the hospital:

To Whom It May Concern:

I am writing to make a suggestion of a topic for continuous education of your nursing staff and doctors. My husband, James, and I have recently moved to Ulverstone from New South Wales. James unfortunately has to make regular trips to the hospital due to multiple endocrine conditions. James has autoimmune polyendocrinopathy which, in his case, has caused pernicious anaemia, hypoparathyroidism, type one diabetes and Addison’s disease.

Since arriving in Tasmania in April, 2007, James has attended the emergency department at the North West Regional Hospital Burnie campus on two separate occasions, due to Addisonian crises. On the first occasion the triage consisted of the triage nurse asking James what had brought him to the emergency department, to which James replied “I have Addison’s disease and I know that I am going into an Addisonian crisis”. James was told to sit down and wait. Half an hour later I went up to the window and asked what was happening. It was only when I stated that James normally triages as a category two patient and that if he didn’t get seen soon he was going to go into shock, that the staff started doing something to help him. The doctors on duty did not seem to know what they should be doing for him and took my advice about the course of his treatment. Luckily we narrowly averted a full blown crisis on that occasion.

On the 19^th of September, 2007, James once again attended the emergency department at Burnie hospital, due to impending Addisonian crisis caused by stress and a chest infection. James handed the triage nurse a printout (see attached) that outlined what an Addisonian crisis is and that it is life threatening if left untreated. This time we were taken straight through to emergency and the doctors had a better idea of how to treat the crisis due to the printout.

My main concern is what we were told by James’s treating doctor before discharge. James requested a prescription for hydrocortisone tablets in a higher concentration (he currently has 20mg tablets) as he would need to taper his dose down and it is easier with tablets of more than 20mg. The doctor replied that James would not need to taper his dose, as he had only been on the higher dose for a short period and would be fine to go back to his normal daily dose. James and I tried to explain that this would be very dangerous for James and that he would just end up back in crisis and in hospital if he did not taper his dose. The doctor once again reassured us that it was fine to go back to his normal dose.

James’s normal daily dose of hydrocortisone is 40mg (20 mg BD). While in hospital he was receiving 300mg a day (100mg TDS) intravenously, on top of his normal oral dose. If James’s dose had only been doubled or trebled he may be able to safely drop back to his normal daily dose without any need for tapering, but due to the huge difference between his normal and emergency doses he would definitely end in crisis if he did not taper the dose.

We understand that Addison’s disease is classified as a rare disease and that, while all nursing staff learn about it during training, not many people with Addison’s are seen by nurses and doctors. However, as the Burnie campus of the North West Regional hospital is our closest hospital it would be nice to know that the staff James sees when he is unlucky enough to need medical attention know what an Addisonian crisis means and how to treat it. Thus I am suggesting an education session on Addison’s disease. My main concern is that when James is in a full blown crisis he may be unable to talk and explain what treatment he needs if the nurses or doctors do not know. Luckily, on most occasions, I am available to take him to hospital, but I am not so naive to think that this will always be the case.

Please see the attached Addison’s Disease Owner manual for more information on Addison’s disease. This manual was co-written by members of the Addison’s Disease Self Help Group and endocrinologist Professor John Wass. I really hope that you run an education session on Addison’s disease as this may one day even save a life.

Regards,

Anyways, James is happy to be home, and so are the boys…