Wednesday, December 22, 2010

An early Christmas present

...or My Cat is a Reindeer!

Chomsky the Cat, fond of cornflakes and sparrows.
Well work has finished for me this year, and I've been stuck into late spring-cleaning the house and Christmas shopping. Oh my! Town is hectic! But I have finally finished, just the groceries to go.

And now for something wonderful. Yes, even more wonderful than my cat doing his reindeer impression. My endo did as promised, and wrote a letter:

A letter from my Endo, cc'd to the fertility clinic!
Typed version:

Dear Colleagues [Fertility Clinic, GP, Diabetes Nurse Educator, Patient],

I saw [Kaitake] for her brittle Type I diabetes. Since the last time I saw her she has changed jobs and initially work has been a little more unpredictable. She is trying to get very good control because she is wanting a pregnancy. Today her A1c is 6.6% which is the lowest she has ever had and is actually lower than it needs to be. She is having still unexplainable variation but no blood sugars below 3 which is a vast improvement for her. She is still going quite high after lunch but seems to be doing much better with carbohydrate counting partly because she has got a calculator to calculate the exact dose of insulin.

There is just an incredible story that she has been turned down for IVF - for which the IVF provider acknowledges they would otherwise be the ideal candidates. However, they haven't "waited long enough" - they have had unprotected intercourse for six years but the mandatory waiting rules only start when you have your first medical appointment with IVF provider. We are going to search her diabetes records to see if it was ever written down. There is also a delay because her husband had a vasectomy in his previous relationship. A vasectomy has got to be considered a good thing for society and yet now the couple is being punished for having done that. All of this is just frighteningly unacceptable and ignores the biology, sociology, psychology of IVF. I suggested that she go see her Member of Parliament. The other thing that is illogical and dangerous about this apparently official rule of having to wait longer for IVF treatment is that there will be an increased risk of morbidity and mortality for [Kaitake] and it will increase [the risk of] Down's syndrome in her child. Both of which are just idiotic for society and the patient.

The patient is going to call me if she needs some help reviewing the arguments when she goes to see her member of Parliament and I will call [the Fertility Clinic] myself to see who has written these stupid rules.

Yours sincerely,
[Consultant Endocrinologist]

So that is pretty amazing to have some help, and to know that we're not alone in thinking this whole situation is rather insane.

I am in the process of composing a letter to my Member of Parliament. This is rather a hard thing to do, I'm finding, as I have to explain our situation carefully and fully - yet it is very uncomfortable to have to tell a non-medical person all this stuff. It's rather a curious and embarrassing thing to have to plead with your MP so you can reproduce! But hey, if it works out, it might get us treatment, and save some other couple from going through the wringer. I just hope he can help, I'm just not sure how??

In other good news, I no longer have 2 and a half months unemployment facing me. Yay! I was only on a fixed term teaching contract, and my permanent contract doesn't start until next year (Feb!). My boss wheedled another week out of the HR department, and then the good folks in the staff advisory department have taken me on for 3 weeks as an e-learning consultant and video editor. Cool! I will be the only one in the art department taking only 3 weeks holiday (most of them are taking more like 10 - 12 weeks!!) but I'm fine with that.

What I'm not fine with is the weather. It's only 3 days until Christmas, and the drought we were having has turned into a torrential downpour of the highest order! Seriously, the humidity is sticky and horrid, and everything seems wet. The biscuits (cookies to you folks in the US) are soft, the Christmas gift wrap is damp, my hair has gone mental, and the garden needs weeding - desperately!

Here is a tour of my back garden, taken between rain showers:

Monday, December 13, 2010

What's the worst thing a low has forced you to do?

I am curious, because I had a low today and I was so desperate (2.3mmol/L, 41.1mg/dL) that I stole someone else's orange juice.

OK, so had the person been present, I would have asked. But they weren't, and I took without asking (probably without being able to ask, if I am honest! I could sort of think clearly, but I couldn't talk properly).

It's the last week before the office shuts down for Christmas break, and one of my colleagues brought in this neat toy:
Xbox Kinect. I played soccer, and boxing. TKO!
We have a video lab at the training institute where I work (art dept), so it was hooked up to a large projector in a darkened studio. Very cool. Before I knew it I had spent half an hour punching and kicking and victory-dancing my blood sugar from 16 down to 2.3. That is a very quick drop.

I looked in my bag: no juice boxes, no muesli or fruit bars. Nothing in the secret draw of emergency food either. Dumb. So I toddle down to the communal kitchenette that the whole top floor uses. I knew there was at least white sugar there. So I start making a cup of tea with about 10 teaspoons of sugar in it. Waiting for the jug to boil. Waiting, waiting, can't wait - need sugar NOW!

I look in the fridge - oh, there is juice! Two big 4L bottles, although one of them looks like it has been there since the beginning of time. Orange juice isn't supposed to be green, is it? :P

So I drank the non-green juice. And I am glad I did, and I would do it again if I needed to. It tasted awful. I hate orange juice! After a few minutes the jug had boiled and my brew was so sweet the spoon *almost* stood up by itself in the cup :P haha. Another 10 minutes and my blood sugar had slowly climbed to 3.3mmol/L. Talk about a close call.

Maybe I should write a note and stick it on the bottle, thanking the person and offering them a new bottle of juice.

What's the worst thing you've had to do to get sugar when you've been low/hypo?

Sunday, December 12, 2010

Jaffas attaaack!

With only one week of work left before Christmas, the weekend proved to be both exhausting and worrying.

We had the step-kids come to stay as usual, and the youngest (9yrs) developed a fever. It started with some uncharacteristic bad behaviour at lunchtime on Saturday, when he refused to eat his lunch at the Grandparents. It turned into a bit of a drama, and by the time we got back to our house, the family was pretty tense. I left to do some Christmas shopping (nightmare! soooo busy), and Hubby sent me a text saying that Mr 9 had finally eaten his lunch.

At bedtime, the kids were exhausted and went to bed no worries, but Mr 9 woke with a headache and very high temperature at about 11.30pm. We got him water and some kids liquid panadol for the fever, and put him back to bed. Hubby checked him several more times during the night, and we made plans to go to the emergency doctor's in the morning.

Come the morning, the fever was mostly gone, and the headache had abated. But his chest hurt to breathe, and he had developed a bit of a cough. With the fever going down, it seemed the worst was over...

...Hubby took us out to lunch at a local favourite cafe, and Mr 9 was looking a bit green around the gills. We ordered a fluffy for each of the 2 kids with us (eldest stayed with his grandparents), and then our coffees arrived. I gave my marshmallows to the kids, while Hubby played with the jaffa on his saucer, picking it up on his teaspoon and passing it back and forth, via teasoon, to each of us at the table. I should have just eaten the damn thing, cos next thing I know, Hubby put the teaspoon to his lips and inhaled the jaffa. Yes. Inhaled. Choking. Wheezing. Purple. Very. Scary. He stood and left the cafe, and I followed after about a minute. I told the kids to stay put, and just to start eating their food should it arrive.

Hubby was not looking so good, he was leaning against a railing, and he had turned a funny colour. He told me that he'd given himself the Heimlich Maneuver, and got the jaffa out. His throat hurt and he had tears in his eyes. We went back to our table and had a slow lunch. Oh but it was scary. It's not everyday a sweet chocolate-orange candy treat tries to kill your husband!

And he's been talking differently this weekend too. About how he wants to be a father...again. :)  It makes me feel very warm and fuzzy to know that he's now wanting this as much as me. :)  With some hope that it may indeed happen, we've been talking about whether we'd like a boy or girl (human, please!), what each of our preferences are about finding out the sex of the baby before birth (Hubby: no, me: probably not). It's still a dream, but now I definitely know it's one we are both thinking about. :D

On the diabetes front, dropping the nighttime Lantus by one unit (to 8u) has so far worked much better than it did previously. I've had two acceptable breakfast tests.

Well, I have had enough unpredictability for one weekend! Back to work for one last, hopefully cruisy week, and then I plan to get stuck into preparations for the Christmas lunch we're hosting.

How was your weekend?

p.s. Mr 9 has made a full recovery :)

Thursday, December 9, 2010

I'm so happy I just did the washing!

Not happy about the washing, silly! Happy enough to DO the washing :)

I've just come back from my appointment with my endocrinologist, and the news is all good. My HbA1c is 6.6%, he couldn't believe it. Wanted to know what I was doing different? (Not much, just using the iPhone insulin calculator app, oh, and got a new, less stressful job). Anyway, because I still do get quite a few lows at night, and especially when I wake up, he recommended "backing off a bit". Which I think is a good idea. I will try dropping my evening dose of Lantus by 1 unit for a week, to see if that helps. I tried it for 2 days last week, but stopped because I got a couple of morning highs that I wasn't impressed with. If at first you don't succeed...

I have added this new result to TuAnalyze, even though they don't yet have a map for NZ:
How my HbA1c is tracking. Not too shabby! :)

Now for the bestest bit. Turns out that my endo has worked in the field of fertility before, so when he started asking how the IVF was going, and I told him how we had been denied funding based on a couple of irrational factors, he responded that it was an "irrational for of punishment" being dished out to us. Finally. Someone seems to get it. I can honestly say that I was not expecting him to say that, or to go further and offer to help us with the paper work and the fight for public funding, but he has. And I'm overjoyed. :D  I just couldn't believe it!!

At last some truly positive news. It feels like there is once again light at the end of the tunnel, where I had been coping in a grey-darkness for so many months.

We had a good discussion about how in New Zealand, where everyone is "equal" the cost of a particular health treatment should not matter. And if it does, then the patient should be means-tested for government funding. He noted that we are being unfairly denied public funding due to factors that we have no control over, such as a vasectomy in a previous marriage, kids from a previous marriage - neither of which we as a couple could affect. We also talked about how waiting will actually increase our chances of having a baby with Down's syndrome, or have me as a diabetic mother die during the process. Duh. "From a medical standpoint, waiting makes no sense whatsoever, it only serves as a cruel punishment to you." I agree. And it is good to know there may be some medical justification in not-waiting which could help advance our case.

Oh, he also recommended Hubby and I go make an appointment to see our local Member of Parliament, to let him know how the health system is failing us. Might just do that....

In other news, the semester has finished, and I gave my whole office Whittaker's Sante chocolate bars, and little cards. They have been in a chocolate stupor ever since!
Om nom nom nom!

I now have about 2.5 months of unemployment before my permanent contract with the local college/training institute kicks in. I shall spend the time:

  • gardening (ate my first homegrown boysenberry yesterday - summer is here with a vengance (drought)
  • building a website for our art department at work (my dept!)
  • hunting down freelance jobs (more websites)
  • hosting the whole fam-damily for Christmas lunch
  • buying pressies
  • watching my Hubby fish of the rocks, which I lie by the seaside up the coast with a book - our secret hideaway!
  • eating fresh Kahawhai, or Snapper, or whatever is caught.
What are your Christmas Summer/Winter plans?

Friday, December 3, 2010

In the local newspaper this morning...

District's diabetes service slammed

Taranaki's district health board has been slammed for inadequate services for people with diabetes.

**Have you experienced problems with a lack of services for people with diabetes in Taranaki? Post your comments below.
Paul Drury, medical director of the New Zealand Society for the Study of Diabetes, was scathing about the level of service provided.

"We are extremely concerned and very disappointed that Taranaki as a district health board hasn't taken diabetes seriously over many years," Dr Drury said.

"Taranaki has possibly the most deficient service in the country."
The TDHB, in a written statement to the Taranaki Daily News through its media adviser Sue Carrington, defended its service for diabetics and expressed disappointment at the criticism

In the statement, primary healthcare portfolio manager Vicki Kershaw said the organisation was pleased with the latest health target results released by the Ministry of Health on diabetes and cardiovascular services, which showed it had reached 87 per cent of the eligible population

"Taranaki tops the country in this target," she said. "The DHB continues to work with and support the PHOs to ensure there are services in place in primary care to diagnose and manage diabetes in the community."
Surveys by the NZSSD and Diabetes New Zealand showed DHBs were failing the rapidly increasing number of people with diabetes.

Taranaki has never had a specialist diabetes service for the approximately 5000 people with disease, and the number is growing by five per cent a year.

"There are currently less than two specialist nurses and less than one day per week of physician time dedicated to the needs of this growing number of people," Dr Drury said. "It is growing very rapidly and there has been no growth in the service provision in Taranaki."

The deficiencies would lead to further complications and "this will have an increasing and inevitable impact on diabetes diagnosis and its long-term complications – kidney failure, amputation, blindness, premature heart disease and stroke".

TDHB clinical services manager Rosemary Clements said it provided 2.5 clinics a week, where 800 diabetic patients were seen by a specialist physician. It also employed four diabetes nurse specialists, who saw about 900 patients each year.

"We are very disappointed at the criticism and believe we are offering a good service to our diabetic patients. The services we provide do not appear to be reflected in the survey data," Mrs Clements said.

A "stay well" programme, aimed at giving people knowledge and tools to better understand and manage their condition, was provided by the TDHB, as was access to psychology and podiatry services when required.
"Taranaki DHB spends approximately $500,000 on specialist diabetes services alone. That is not including work in the community and other specialist services that are utilised," she said.


So, this is where I live. In the worst district in the country for diabetes care, money wise. No wonder I can't get funding for an insulin pump! And don't worry, I commented as such...

My Comment:

Type 1 Diabetic   #1   11:28 am Dec 03 2010

Yes, I do think that the level of service offered needs to be improved for diabetics, of all types (1, 2, LADA, gestational etc). But it's not the medical staff who are at fault - they do a great job and are incredibly knowledgeable and helpful. It's just the MONEY which is not available.
It costs a lot to be a diabetic. Not many people know, but here in Taranaki diabetics are severely disadvantaged because our health board does not have funding for internationally accepted state of the art treatment - namely, insulin pumps and continuous glucose meters.
Yes, these devices are expensive, but remember that a diabetic (of any sort) did not choose to become diabetic, and if there is a medical treatment which has a high success rate in treating the daily complications of high and low bloodsugars, I believe we should have access to it. And how much would one of those cost? Try $7000 plus $2000 running costs per year. Too expensive for most.
Other health board around the country routinely fund these devices for those in need. But not here. It's almost worth moving for!
Please Taranaki District Health Board: look at how much it costs to be a diabetic - both in monetary and health/emotional terms - and do better for all of us!