Letter

I want to share with everyone the letter I wrote in February to Centrelink to accompany my claim for carers payment. I finally got approved for this payment about a week and a half ago. I want everyone to know the amount of care I provide James – but I am too tired, busy and frustrated to write all this out again so I’m copying and pasteing.

___________________________________________________________

To whom it may concern:

I believe that I need to include a letter to explain the care duties I perform for my husband James to accompany my claim for Carer Allowance/Payment, as I feel that the form does not allow me to show the amount of care I provide.

James has an very troublesome and difficult to manage condition called Autoimmune Polyendocrinopathy Candidiasis Ectodermal Dysplasyia (otherwise known as APECED or APS1)- an extremely rare endocrine disorder. There are many life-threatening components to James’scondition. He suffers from Addison’s disease, insulin dependent diabetes mellitus, hypoparathyroidism, pernicious anaemia, chronic candidiasis, vitiligo and alopecia. Each one of these conditions creates havoc for the others, therefore making them all harder to manage.

James has chronically unstable Type 1 diabetes. Despite being on an insulin pump, James has an Hba1C (a glucose marker performed every three months on a person with Diabetes) of 10.3mmol/L, indicating that his blood sugar levels are, on average, around 15mmol/L, this is well over the recommendation of an hba1C of less than 7mmol/L. On an average day, James’s blood sugar levels can vary from 1.8mmol/L (at this level James is barely conscious at best) to a readings over 33.9 (the highest reading that the meter can detect). To try and control James’s blood sugar levels, we check his levels by finger-pricking up to 10 times a day. As James has trouble with his memory; a symptom that is synonymous with late stage Type 1 Diabetes, but also some of James’s other conditions, I need to remind James on a frequent basis to “check his level”.

If James has had a good day, I also wake up at least twice overnight to check his level whilst he is sleeping. If James has had a bad day, I stay up most of the night and check his level every half an hour or hour. I am always prepared to pour sugar laden drinks down his throat if his levels are descending rapidly. James is unable to recognise that his level is dropping. He can sometimes feel that his level is low at around 2.2mmol/L, however by this level he does not have the correct level of cognition to treat the hypo appropriately. With James, episodes of hypoglycaemia are often sudden and come without warning. We are never far away from a glucagon injection (an injectable serum that has reversible effects on low blood sugar). An injection of this hormone into the thigh will kick start the liver to release built-up glucose stores into the bloodstream. I can’t recall the amount of times that I have had to inject my husband as I talk him through fighting unconsciousness, praying that he doesn’t fall into the stage of diabetic coma, or require resuscitation.

Addison’s disease makes it much harder for James to manage his diabetes. James’s level will go up after he has his medication, and will drop almost uncontrollably if he does not have enough hydrocortisone in his system. By itself, management of Addison’s disease is difficult, as it makes it hard for James to fight any infection he may contract. Illness, physical shock and dehydration can bring on an Addisonian crisis (hypovolaemic shock). If James starts to experience any symptoms of an Addisonian crisis, vomits or experiences severe diarrhoea he then requires an emergency injection of Solu-cortef, a hydrocortisone solution. James is unable to give this injection to himself and often when he is going into hypovolaemic shock he is unable to make his way to the phone to call an ambulance. If left untreated an Addisonian crisis can result in death due to extreme hypoglycaemia, dehydration, shock, low blood pressure, decreased cardiac output, arrhythmia’s, and/or salt loss with potassium retention. An Addisonian crisis can be averted by an intramuscular injection of Solu-cortef, which James needs me to administer, otherwise the situation will deteriorate rapidly into a immediately life-threatening state.

A typical day for James and I starts at around 8am when the alarm goes off for the third time overnight. After turning off the alarm I check James’s level using the glucometer which we keep next to the bed. After performing this check James needs repeated prompts to get up and have his tablets and breakfast. If James does not have his tablets at regular intervals he experiences low blood sugar levels and can also go into life threatening shock. During the day James requires prompting to check his level. Often he will head off to check his level, forget what he was doing, and thus need to be prompted again. As James forgets to use his insulin pump to deliver insulin when he eats, I also provide reminders for him to do this. Depending on what time we go to sleep, I will set the alarm for 12am and 3am (we have a dual alarm clock) so that I can wake up and check James’s level. When I wake up to check James’s level I reset the alarms so that they sound at 5am and 8am.

On a bad day James will sleep all day. When this happens I have to check his level every 30 mins to an hour, as his levels are very hard to control when he is sick. I also have to ensure he wakes to eat when he needs to, that he has his tablets when required, as well as checking his temperature and his blood pressure. It is not uncommon for me to spend the entire night awake on these occasions. However, good days can easily turn into bad days when James’s level unexpectedly soars or drops. On both occasions James will be extremely tired in the aftermath of the ravages upon his body from hypoglycaemia and hyperglycaemia. Whether the emergency has been a severe hypoglycaemic or hyperglycaemic episode, the result will always be blinding, torturing headaches, extreme light sensitivity and nausea.

The following is an example of a day which started out good and rapidly turned bad. The sinister nature of these conditions is that we never know exactly if, when, where or how serious an attack could surface. James and I got up early to take my dog to the vet. At around 11.30am I lay down to have a nap as I was tired from checking James’s level overnight. I was woken up just before 1pm by James telling me that he felt sick. He had been outside in the garden working and had experienced a severe hypo. He does not remember much of it, only that he was sitting outside and thinking about his vegetable garden. The next thing he was aware of is that he woke up face down in the dirt. He remembers getting up and coming inside to look for his car keys, then his symptoms seemed to be alleviated, despite the fact that he was standing in the shower with purely cold water running over him. He warmed himself, and was lucid enough to recall what he could remember of the life-threatening events that he endured alone, fortunately he came to wake me and let me know his situation. His level at this stage was 10.2 mmol/L. As we discovered later he had treated the hypo with the first thing he found when he opened the fridge, which was a litre of custard. He lay down to tell me what he remembered about his hypo. Suddenly, he felt overwhelmingly nauseous, and he had to rush to empty the contents of his stomach. It was at this stage where my presence was necessary, as I had to rapidly prepare a hydrocortisone injection; if he doesn’t receive an injection of this immediately after he vomits, he will experience severe hypotension and/or life-threatening hypovolaemic shock. I grabbed James’s Addison’s emergency kit, prepared and administered the injection. James then fell asleep, exhausted by the ravages of the hypo and vomiting. I then spent the rest of the afternoon monitoring James’s blood sugar levels each and every thirty minutes to ensure it did not drop too low as, since James had vomited, he had no food in his system to keep his level within a normal range, and he was not able to eat without the risk of vomiting again before he went to sleep.

James has been having increasing trouble with his eyesight. He has blurred vision and an aversion to bright lights. We have an appointment with an ophthalmologist on the 18^th of February, 2008, so we should know why he is experiencing these problems. Because he is unable to tolerate bright lights, I now have to do all the driving whenever we go out, including driving to an increasing number of doctor and specialist appointments.

James takes at least 19 tablets each day (133 tablets a week or 6916 a year). This number can increase if James needs to take more hydrocortisone due to illness or stress. Each week I need to sort out James’s tablets into pill containers so that he can try to keep track of which tablets he has had. Often it is only when James’s level drops low for no reason that we discover that James had forgotten his tablets, despite my many prompts. James also needs to have a cytamin injection (B12) every three weeks. James has trouble with allergies and one of his tablets each day is an antihistamine which mainly keeps this under control. When these allergies become prominent, James gets burning, painful eyes which he cannot open.

James is on an insulin pump to help control his diabetes. An insulin pump is a device which continually delivers insulin under the skin via a soft flexible canula and tubing which needs to be changed every three days. The tubing and canulas used for James’s insulin pump can be very temperamental, causing infections at the site, or bending and getting blocked. I have performed site changes on James in many different settings. As James usually uses a site that is towards his back on his side, he is unable to do this site change himself.

We are also working closely with James’s new endocrinologist, our GP and the staff at the diabetes centre, to get James’s insulin pump settings corrected to minimise unpredictable low and high levels. James’s other medication is also under review. It is a constant juggling act to manage the different medications, as the amounts needed vary almost on a daily basis. For example, if James gets an infection, (even a tiny mouth ulcer) he needs to take more hydrocortisone tablets, which increase his sugar level, therefore, it is essential that he is fed more insulin. A low blood sugar result naturally puts excess stress on James’s body, and he often needs extra hydrocortisone to manage this as well. This frustrating affect on sugar levels is something we are endeavouring to conquer so that we can program James’s insulin pump to account for these changes.

I recently had no choice but to stop working due to the fact that James needs me to provide care for him 24 hours a day. While I was at work there was no one else available to care for him, and obviously I am unable to be in two places at the same time. I enjoy working and I wish to return to work in the future if possible. As you can imagine, by quitting work our household income has been severely reduced increasing our financial burdens. The carers allowance would help to alleviate these concerns while we work to get James to a more independent state of health, which is a constant goal of ours.

I hope this letter has shown that I provide care for James for at least the equivalent of a working day as required for receipt of the carers payment. Although James is an adult, the nature of his conditions means that it is up to me to manage his health on a daily, even hourly, basis. It is almost impossible to express the difficulty in managing James’s conditions and the amount of time and effort I put into keeping James alive and as healthy as possible, but I hope that I have managed to express it adequately. I hope that by outlining James’s contradicting and life-long situations, and the examples that I have provided of a near coma or fatality has helped you understand the enormous amount of pressure that we both face every single day. I know you will now be able to appreciate the juggling act that we undertake managing James’s conditions, and the amount of time and effort we put into ensuring that James remains as healthy as possible. The infuriating and enraging situations arise when a miniscule amount of “relaxing for a day” or relaxing the usual level of control in regards to his medical conditions by either of us could realistically result in James’s condition spiralling out of control and into a life threatening state. James’s GP has stated that he is willing to write a letter addressing any queries you may have about James’s conditions or my role as a carer.

Generosity

As James’s eyesight gets worse we have been concerned about Blood Glucose Monitoring as you need to be able to see well to read the result on a normal meter. I went on an internet search for a solution to this problem and discovered a meter which will talk the results of a test. This meter is called the Sensocard Plus.

I continued my search – this time specifically looking for information on the Sensocard Plus. I found a few road tests about this meter and it’s non-talking twin, the Sensocard blood glucose monitor. Almost everything I found was positive – the only negative point made was that the case is a lot bigger than it needs to be.

My next virtual stop was on the Diabetes Australia website, and specifically at the National Diabetes Services Scheme (NDSS) order form. This enabled me to check if the strips we would need to use for the Sensocard Plus would be covered under NDSS. Luckily the strips are listed on the NDSS, if they weren’t listed we wouldn’t have been able to afford to pay for the strips.

Then I hit a road block. I looked at the price. The Sensocard Plus is approximately $125. Not a huge amount – but not an amount we can afford right now. While James can still mostly see his meter (if the light is right) if he is going to need to test without seeing it is better that he learns now while he can see.

So I had a thought. A lot of meter companies give free monitors to diabetes services. This way they can guarantee that the person who gets the meter will be buying the strips made for that machine and therefore increasing their profits. While I hate asking for help, I decided that we had nothing to loose by contacting the Australian Distributor of the Sensocard Plus (Point of Care Diagnostics – PCOD) and explaining out situation. I sent this email at 2am on the 27th. Almost exactly 12 hours later I got a reply saying that they would happily send us a Sensocard Plus monitor.

I was very happy to say the least. They got an email back from me which said “Thank you! Thank you! Thank you! Thank you! Thank you!”. We then headed off to physio and on the way home stopped in at the chemist to check if they stocked the strips (they didn’t so we organised for them to order some for us). When we got home there was a reply from POCD saying that the meter had just been packed and would be sent that afternoon. They also wanted to let me know that the strips where listed on the NDSS but aren’t carried by most chemists as they aren’t as common as some of the other strips.

At around 3pm there was another email in my inbox from POCD with an attachment as the lady who had been emailing me thought that it would be easier for James to read the manual on the computer – where he can increase the font size if needed – than in the book which comes with the meter.

This means that at this moment a new talking meter is somewhere in the Australian postal system on it’s way to our house!

I just want to add a thanks to the lady who I have been emailing at POCD, she has been very friendly and helpful. If she is a sign of the customer service we can expect with our new meter, I don’t think we will have any problems!

I know I’ve gone quiet again after I said I would try and update more regularly.  I have thought everyday about posting but have had difficulty getting into the right head space.

…. and I’m still having difficulty trying to order what has happened in the last few weeks into one post!

James’s eye sight was not helped much by the glasses.  After about a week we went to the doctors for a referral to another specialist and the next day we went back to the optometrist.  He was shocked to see how bad James’s corneas looked – according to him they looked like they were full of tiny pin pricks.  He rang James’s GP who arranged for us to go to the Eye Hospital in Launceston that afternoon.  We had about half an hour to get ready and then headed off on the hour and a half drive, most of this drive James had his jacket over his head to reduce the amout of light hitting his eyes.  After waiting for a while James’s name was called.  We went in and saw the registrar who is normally stationed at the Eye and Ear Hospital in Melbourne.  Surprisingly he knew of APECED and had even seen a few other people with the condition.  We left the meeting with a scripts for two different types of eyedrops.   We spent the weekend trying to chase up one of the types of eyedrops, however we were unable to get them from the hospital.

On the next Tuesday we went back to the Eye Hospital.  We were informed that there was going to be a wait of at least 30 mins and the receptionist suggested that we might like to go for a walk.  We walked out the door, remembered that it was hot and went back inside to wait.  Two hours later James’s name was finally called!

James was tested for tear production which was within normal range.  The registrar was able to organise the eyedrops we had been unable to find.  He then got a senior doctor in for a consult.  They discussed a number of things including that they were concerned about the rate of progression, that a corneal stem cell transplant rarely works, and basically said that James’s eyesight is going to keep getting worse until he can no longer see.   They are also going to arrange a referral to whoever the APECED eye guy is in Sydney.

Since that visit we have been putting eye drops in James’s eyes every hour (we have to do both types 6 times a day, on alternate hours), James’s eyes have been less photosensitive, however his eyesight is still blurry.

As well as dealing with all the eye stuff, we are waiting for an appointment to get a suspicious lesion in James’s mouth checked out.  We showed the doctor and I mentioned that I had seen research saying that oral squarmous cell carcinoma is common in people with chronic candidiasis.  When I said this the doctor just nodded and then wrote a referral for us.  Unfortunately we have to wait until the 14th of April for that appointment.  The 14th of April is also my sisters wedding,  which is at 3pm, and our appointment is at 3.30pm meaning that we will be unable to make it to the wedding.  We didn’t have an option as if we didn’t take the appointment on the 14th of April we would have had to wait until the 23rd of May (which coincidentally is the same sister’s birthday!).  After the visit on the 14th we may also be able to work out when we can move back to the mainland.

So right now we are just waiting…. waiting and trying not to go crazy.

Project 365: Australia ~ 2nd March (day 123) – 5th March (day 126),2008

Day 123 – 2^nd March, 2008

Today Jo came to visit us! Jo is my friend from uni who lived with us for 6 weeks last year while doing a placement in Tassie. We went for a drive to show her partner some of her favourite parts of the North West coast. Today’s photo is of James eating at Guide Falls. We may have been out of the house – but diabetes came with us.

Diabetes never takes itself off on a road trip. There is no cure.

Day 124 – 3^rd March, 2008

Today I cleaned out the ‘rubbish’ drawer next to the bed and today’s photos are of the diabetes rubbish in the bin.

Diabetes is not good for the environment. There is no cure.

Day 125 – 4^th March, 2008.

I spend a lot of my time waiting. I spend time waiting for James to get ready in the morning, for him to treat hypos before we go out, for James’s level to go up or down, and of course, waiting in waiting rooms. Today’s photo is of me waiting for James to get ready before we went out.

Diabetes is time consuming. There is no cure.

Day 126 – 5^th March, 2008

Today we picked up James’s new prescription sunglasses! He was actually able to drive home from the shops this evening although the 2km drive caused his back to hurt so he will be back in the passenger’s seat for a while.

Like James’s sunnies – diabetes is dark. There is no cure.

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

Day 109 – 17^th 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 – 18^th 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 – 19^th 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 – 20^th 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 – 21^st February, 2008

Today’s photo is of a table of the components of APECED. Since the optometrist visit on the 19^th 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 – 22^nd 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 – 23^rd February, 2008

Today is James’s 24^th 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 – 24^th 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 – 25^th 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 – 26^th February, 2008

James had a CT scan of his back done today. We have to wait until the 28^th 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 – 27^th 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 – 28^th February, 2008

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 – 29^th 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 – 1^st 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

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

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

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.

Project 365: Australia ~ 4th January (day 65) – 8th January (day 69), 2008

Day 65 ~ 4th January, 2008

This is the DB Alert that arrived in the mail today. I ordered it from America, as it isn’t available in Australia. I can set different alerts on it so that it can remind James when to have his tablets and to check his level. James has difficulty remembering things and so this little device should help him to remember.

Diabetes can make you forgetful. There is no cure.

Day 66 ~ 5th January, 2008

This afternoon just as James was getting ready for work, Carbi came inside and started gasping. He was unable to walk properly and he was having trouble breathing. James rang the vet to get advice and we were told to keep an eye on him. While I was watching him James checked his level and discovered that he was 3.1mmol/L. I jumped up to get James some food while he kept an eye on Carbi. When I got back I tried to get Carbi to stand up – that was when we realised he had wet himself. James rang the vet again and they told us to bring Carbi straight in. I rushed with Carbi to the vet and James waited at home until he was ok to drive to work. The vet discovered that Carbi had been stung by a bee at the back of his throat. I had to bring him home and keep an eye on him, while keeping him cool.

Diabetes rears its head at the most inconvenient times. There is no cure.

Day 67 ~ 6th January, 2008

I took this photo to remind myself that there are beautiful things and moments in the world. Our life it like this flower, each different petal is a different aspect as life.

Diabetes is just one aspect of life, however sometimes that aspect grows and takes over the rest of them. There is no cure.

Day 68 ~ 7th January, 2008

Today we had to complete the 244km round trip to see the nearest endocrinologist.

We left with enough time to go to Launceston Gorge and have a picnic lunch. We also managed to catch up with one of my friends from uni who is now living in Launceston and ended up having dinner at her house.

I felt sorry for the person who had the appointment after James as we went in to our appointment 30 mins late, and then we were in there for over an hour.

We found out that James’s cholesterol is high and he is now going to start on a new medication to help lower that. This is the worst thing about living in Tasmania – the distance to the endo, however, the endo is really really good and worth the trip.

Diabetes is time consuming. There is no cure.

Day 69 ~ 8th January, 2008

Today I got James’s new medication from the chemist. It is called Lipitor . It adds an extra $1.05 to James’s tablet bill each day!

While at the Chemist I also got new tablet containers so that I can sort James’s tablets out for him.

Diabetes is one part of James’s condition – the others make it harder to manage! There is no cure.

Project 365: Australia. Days 36 – 40. 6th – 10th December, 2007

Day 36, 6th December, 2007

I took this photo but don’t have an explanation for it, and can’t be bothered thinking of one.

Diabetes is mind numbing. There is no cure.

Day 37, 7th December, 2007

This is James and his coffee machine. James loves coffee (almost as much as he loves me ). James has worked out how much insulin he has to bolus to cover a cup of coffee.

Diabetes involves insulating yourself against blood sugar rises, even when having a ’simple’ cup of coffee. There is no cure.

 

Day 38, 8th December, 2007

On the 8th of December, I had to leave for work at 6am. James’s level was ok when I woke up but I wanted to make sure it would stay that way. James titled this photo “James and the quest for carbohydrates”.

Diabetes makes you search for things to keep your level stable and you safe. There is no cure.

Day 39, 9th December, 2007

James was sick when this photo was taken. As you can see, it is a sunny day outside but all our curtains are closed because James’s eyes are sensitive to light, especially when he first wakes up. This is due to both the hypoparathroidism and diabetes. On beautiful sunny days we are often found inside with the curtains closed.

Diabetes is dark. There is no cure.

Day 40, 10th December, 2007

Today we had to go to the chemist to get some more tablets. Today we got Caltrate, Calcitriol and Hydrocortisone – all adding up to over $60 .

Diabetes and other health conditions cost more than just effects on the individuals health. There is no cure