24w4d Viability and Type 1 Diabetes control

If you are more interested in reading an update about Tiny Fish then please skip down a bit :)

Diabetes and Pregnancy at 24 weeks:

I am starting to think that the first whispers of insulin resistance may be appearing.

My last two weeks - CGM data

Although in general, my blood sugars are averaging right on target (7.5 mmol), there are now some worrying patches where it is going too high for my liking (above 10 mmol). It's still brilliantly wonderful compared to the pre-pump, pre-pregnancy results, but now that I get tired so easily that little additional couple of mmols really makes me feel like crap. Tired, dry mouth, lethargic, and fuzzy-brained. What's more, if I sit at 10+ for more than 2hrs then I start to get a headache caused by the additional dehydration. Boo.

So here you can see the actual CGM readings from the last two weeks:

The raw CGM data plotted with each day as a different colour.

I was getting higher and higher reading overnight, even though they held pretty flat. Of course, nothing is guaranteed to last more than 3 days in Diabetes Land so I've started having 3am lows (note the red line) in the last 2 nights. Sigh. And I was just about to raise the overnight basals! Must be another growth spurt for Tiny Fish?

My Diabetes Nurse Educator (DNE) likes to tinker with insulin to carb (I:C) ratios first, as these are quite a quick tool to see if they are working. I think the breakfast I:C ratio is doing ok, by looking at that graph above, but it doesn't show you that I've been having to add 30%+ temp basal increases to claw my blood sugar back down during the morning for the last several days. I believe a gentle strengthening of that I:C ratio is in order. (Changed! It was 1:7g and I've just moved it to 1:6g - that may not sound like a lot but I would prefer to adjust things gently as low blood sugars/hypos really tire me out and I seem very sensitive to insulin changes.)

Lunch is definitely my nemesis. Look at that awful peak! Every colour goes up (with the exception of purple, whatever day that was??) meaning the I:C ratio is probably quite shot. I have just changed it from 1:6 to 1:5, and although I expect it will need to go further I still get very nervous giving a bolus of 5 units or more... so I will adjust the basal rate for lunchtime as well to provide a bit more of a gentle boost. Basals should start about 1hour before your want to see the result, so I will look at altering the basal from about 11am onwards thru to 3pm. I've just put it up from 0.675u p/hr to 0.7u p/hr. Not a great increase, but I will see how it goes and keep doing gentle increases every 3 days as needed.

Dinner is a bit of a moveable feast with the actual eating occuring anywhere between 5pm and 8pm. I don't really want to tinker with anymore basals or I:C ratios considering the changes I've made to earlier in my day, so will leave this chunk of the day until the next download. Best to change just a few things (or one! But I'm too impatient! lol) and know which change affected what.

Tiny Fish update:

Hooray for 24 weeks and "viability" - whatever that is. I take it to mean that should I (heaven forbid, touch wood, throw salt over shoulder etc etc) go into early labour then the medical folks would have a crack at saving the Tiny Fish. I very much like the idea that the outside world now considers Tiny Fish worth saving. I have thought him/her worth it since I knew she/he existed for us. It is interested now that I am Showing with a capital S how people react differently to me. My pregnancy has felt very real to me for a long time now, so it is strange to see how other people are just starting to catch on with the idea. I am now well over half way there, and I have been rather full of mirth this week when colleagues and students react in surprise when they ask "am I pregnant?" get a "yes, over halfway now!" in response. Hehe.

I have a nearly-flat belly button. This intrigues me, as my belly button has always been quite sensitive and now it seems to have lost a lot of sensation. I still have a waist, but only just. I can no longer wear normal pants and have been in maternity jeans since the day I bought them.

There is a little bit of reflux, but this is more from the fact that my stomach is getting compressed and I can no longer eat a huge meal. Even though I feel like the cookie monster and have an appetite that could crush mountains. It's a cruel irony that now I am "allowed" and even encouraged to eat more, I can't fit it in without reflux or terrible painful indigestion. My weight is now about 64Kg, give or take, and I still get a bit worried when I see it plateau or drop. Nearly 10Kg+ from my original weight of 55Kg.

The biggie is my leg. I have tried physio (4 sessions) and that seemed to help a tiny bit, but not really. Honestly, they don't seem to be able to help. When I went last week the physio suggested I try a stretchy type of maternity belt thing to try and hold my belly up and off the nerve in my hip. This works for about 15 mins, or until I move, when the stretchy band will roll up and try to cut me in half. I wore it for 2 days before ripping it off for good. The pressure of it squishing my belly was just too much, and I got a very good impression of what a sausage would feel like!

Today I had to take my students on a field trip. About 30mins before we were due to depart, I remembered that on this particular field trip there are very few places to sit. It would be standing for about 2 hours. I started to panic because at the moment I can't stand up for more than about 10 mins before the searing, burning, buzzing, icicle-stabbing pain goes through my right front thigh muscle. I can no longer wear shoes with a heel of any sort. This, I do not like. I spent most of the field trip propping my right foot up on anything the right height, looking like a flamingo, trying to take the weight off that hip. Not that it relieves the pain or anything, it just means I don't collapse.

I managed a gentle 20 min walk along the seaside walkway on the weekend, but couldn't walk back so Hubby had to get the car to collect me. This piece of exercise did me good and yesterday way brilliant with loads of energy. today not so great but that's cos I forgot my pre-natal vitamins!

So I have decided that the physio has reached it's limits. I will instead look at something for more whole-body relaxation, like a pregnancy massage. And I want to do more swimming and more gentle walks even though it hurts. The exercise does me good in the long run.

Depending on whether Tiny Fish is having a growth spurt (I get headaches, tiredness, and all over achiness +++) or not, then my sleep is either reasonable or complete crap. On the nights where I wake up multiple times with low or high blood sugars, plus a couple of times to pee, and then every time I need to rollover I "wake" exhausted in the mornings. The achiness is something else. Shoulders, upper back, hips, all my belly, and legs all aching together. On those nights I build a fort of towels and pillows in the bed and try to be careful with rolling over. Last night was pretty good, no towels or pillows necessary so I could spread out a bit, and just Sockington the insulin pump (in his snazzy blue sock) to take care of when I roll over. I never thought sleep would be such a complex drama. But insomnia sometimes grabs me when I am very over tired and that just makes things worse. The key is to go to bed early. Easier said than done!

Sorry for the ramble-ness of this post, that's about as coherent as I get these days.

Thank you to all of you who have taken time to post comments, it's lovely to hear from you! Even though I am not posting super-regularly I am reading all your blogs every day!

Slightly belated: 7w6d ultrasound

Sorry to keep you all waiting so long, my only excuse is that I have been exhausted. Like, take a nap at 3pm exhausted!

Great news: we had the "8 week" ultrasound done on Thursday 28th 2013 when I was 7w6d.

Here is a piccy:

The size of a raspberry? Kidney bean?

If you need help deciphering the picture, the line between the two little white crosses is the crown to rump length CRL 1.29cm, and the head is down with bum up. The left curve is the back, and the interesting fluffy parts on the right is the umbilical cord, and perhaps arm and leg paddles? Who knows. We saw a good heartbeat of 164bpm which the OB/sonographer said was right on target. She also looked a bit bored but basically told us that everything looks right on track.

I have never been so relieved to see some flashing, pulsing pixels in my life.

Hubby filmed it on his phone, so I will try and post the video up sometime too.

When the OB checked my ovaries, she said they were still quite swollen, and even asked if I had been overstimulated. They were big and empty looking. She said they were still recovering, but I hadn't expected that to take so long. Who knew the ER would be so damaging to them?

In other news, we had another chat about the ante-natal testing, and Hubby basically came to the conclusion that I will worry like a crazy woman unless I know, and I came to the conclusion that if it was really that important to him I could live with not doing the testing. End result is that we have agreed to do the testing including blood screening test and nuchal translucency ultrasound scan. I am pretty relieved about that. It means a great deal to me that should we find anything, I can have time to prepare myself.

Symptoms? Yes. Plenty.

Sheer and all-encompassing exhaustion is the major one at the moment. I am fine (sort of) and awake one moment, and the next I am the walking dead. lol. Mostly I can get through the day, but I am taking some serious cat-naps in the weekends.

No morning sickness. And that is the way I have decided it shall stay! There has been a little bit of mild nausea, but it's actually more like what I would describe as extreme hunger. As a diabetic I don't get hungry, like ever and this is because I am and have always eaten on a regular schedule. On the rare occasions when I have experienced hunger (from illness etc) I never really recognise it as such, and it instead feels a lot like a cold, slightly nauseas feeling radiating out from my sternum/high-stomach area. It's not an "I'm about to puke" feeling, and it usually goes away with application of noms.

I am sneezing a lot at the moment, not sure if it's hayfever or just irritation from the increased blood supply to well, everywhere including my nose that's doing it. It's tolerable but if it gets much worse I will have to look and see if I can take any hayfever meds... don't like my chances though.

Peeing is my new hobby. My record at night is 3 times. And none of those was caused by a low or low alarm.

Prunes and kiwifruit are my new best friends, as are bottles of water.

My diabetes is being...predictable. Well, almost. It's not terribly stable, in that I am going low multiple times per day (and night), but the predictability comes in the timing of those lows. They tend to happen about 2hrs post meal. My DNE nurse put my I:C ratios up for all main meals a couple of weeks ago when I was still having quite a few highs. At the time I thought the increases in I:Cs were a bit late, since I could already tell that my blood sugars were dropping. And now they are tanking multiple times per day, however the insulin doesn't kick in soon enough if I take it when I start eating (I know, I know, supposed to take it earlier!) and I am still getting a noticeable rise in blood sugar after a meal. Trouble is by the time the bulk of the insulin is kicking in, the food is wearing off and that's when I go low.

When I was last on the phone to my DNE she recommended that I eat a lot MORE food and a lot more fat and protein, especially for lunch. Well, I have been trying that for a week now. I feel stuffed to the gunnels most of the time and have regained half a kilo (after losing 1.5Kg in 2 weeks which is what got her so worried). I do get more hunger feelings that I am used to, however I cannot really handle eating this quantity of food PLUS all the emergency food I am eating/drinking to get my blood sugars up when they go low.

This evening I went to the supermarket to get three things: yoghurt, strawberries, and bananas. Smoothie time. Well, I pulled into the carpark and since my Dex was still on start-up, I did a quick test. 3.8mmol so I drank a juice, ate an afghan bar and decided to wait. The Dex and Vibe then both started bleating for calibration tests, so I did those too. My brain was foggy but not so foggy that I couldn't do a quick nip into the supermarket. I had a written list and I thought I had just eaten all of my food - turns out my foggy brain had completely forgotten about the pack of jelly beans in the globe box, as well as doing anything sensible like phoning Hubby. Sigh. My brain just gets super fixated on a single thing, in this case I knew that the supermarket had food, and I knew I needed sugar, so that's where I went.

Got a trolley to hang on to instead of just a basket, and started working my way slowly through the shop to get the items on the list. Note to self: do not shop while low. What should have been a $15 trip cost $90!!!! All manner of tasty treats found their way into my trolley! Whoops! Just before I got to the checkout, I started to panic a bit as the low symptoms were coming on really strongly. I must have been looking rather pale as several shelf-packers gave me weird looks. I headed to the drink aisle to get something sweet and fast. Ended up grabbing a bottle of lucozade which is 68g of carbs in a bottle, but no caffeine - I checked.

At the checkout, the woman in the queue in front of me was taking forever. Then she decided to pay using a credit card that wouldn't scan. The receipt finally printed and the checkout-chick tried to fold it up, got is scrumpled up, tried again, and again; there was lots of smiling and laughing amongst them while I contemplated breaking all the social conventions of supermarket shopping by ripping into the lucozade before actually buying it. I had my eftpos card out and ready. I was standing with both feet flat, the trolley wedged against the counter so that I could lean on it. Even in my hazy mind I knew that 3 point support wouldn't tip over! Finally I got my groceries scanned, paid for and bagged, and headed out to the car. Got things loaded in ok, all while the world wooshed and fuzzed around me. A bit of a mix between extreme tiredness and hyper-sensitivity to lights and colours. My brain slows right down and I must carefully check every thought to ensure that what I am doing is correct, will use the least energy until I can get more glucose in me, and will not be liable to draw unwanted attention to me. I am quite good at this (I think) so managed to do a moderate sized grocery shop on a blood sugar of about 3mmol (and it was still dropping at one point, with Dex alarms blaring!) all while no one around me was any the wiser.

Got that lucozade in me, waited, tested and as soon as my brain felt ok, and the test was over 5mmol I drove home.

Hoping to get my DNE nurse on the phone early this week to see what she suggests to sort this out. And eating more is not practical!!! I just do not have room!

Only a could of weeks of work left and then I will be on Christmas holidays. Yay!

Thank you to everyone who wrote comments on my last post with advice and support. I really appreciate you help :D

Interesting article on infertility

Interesting article about how infertility changes our perceptions, and perhaps how others perceive us.

I am currently on leave for a week - yay school holidays! I hope to make some artwork this week. I have a couple of ideas so we'll see what I can magic up :P

Unfortunately this time of year is hard for me. I have 1 year left to wait of penalty time before hubby and I become eligible to go on the 18 month waiting list for publicly funded IVF, ICSI, sperm retrieval.

That is a total of 2.5 more years to wait. That will make the total time that I've been waiting = 10.5 years. I will be 31. I am 29 now and I was 27 when I started this blog.

It's not an easy wait. I have had absolutely no contact with the clinic for months. I last spoke to the clinic manager on the phone, telling her I would send in a formal complaint letter. Inertia has gotten the better of me, and when the local politician, and the Minister of Health both shrugged and said they couldn't help, I kinda resigned myself to waiting. Fighting was destroying me.

I would dearly love to change clinics. But because I am not a human being, the NZ health system sees fit to restrict me, someone from the provinces, to a single clinic. This is the only location in NZ where I can access publicly funded treatment - once I wait wait wait and wait for it.

Time away from work is hard, because IF consumes me. I keep thinking about how the beauracrats classify our case, and how we don't fit into any neat little pigeon-hole:

I have primary infertility, but I am perfectly fertile.

My hubby has secondary infertility caused by a vasectomy during his first marriage. So is it secondary IF when it's with different spouses?

Hubby is adopted, and early on he raised the idea of us adopting a child. I knew then that he understood how much a child would mean to me, but not that I needed the child to be mine. Of me, and of him.

Partially, this idea has been tested. I have 3 step kids. They don't live with us full-time, and we get along well. But they're not mine. I look at them and my heart is crushed each time as I remember that hubby has this past which I can do nothing about to change.

Which is also strange, because if any part of hubby's past was different (if he never met his first wife, never had kids, never got talked into having the vasectomy etc etc) then chances are I would never have met'n'married him. And he is my best friend. So I am absolutely torn when that ugly desire rears it's head.

I feel alone. Because I am going thru IF. I am the one who doesn't have kids and he does. So he doesn't have the same sense of urgency or need. Plus I'm not really infertile at all. Technically, I don't know, since my eggs have never been anywhere even remotely close to any sperm ever.

I feel full of unsettling opposites. Infertile but not. Secondary versus primary. A step mom but not a real mum. Happy with life and love and job but unfulfilled. 8+ years in this situation but not long enough duration to qualify.

I haven't even contacted my OB who referred me to the fertility clinic. Maybe he could help - of course that would cost money.

My new GP is very nice. He actually trained in the same class as the head of the fertility clinic franchise. But what can he do? He can change the law can he?

I am a patient who has been left completely alone. No follow up care whatsoever. And reading the article at the top of this post, seeing stories about how the relationship with the RE is crucial - I just feel lost. If I complain now, will they make it harder for us later? They are a business that is largely unmonitored, so they can probably chuck noisy customers to the bottom of the heap.

As you can see, holidays have once again given me too much time to think and mope. Either I spend this week making artwork, or start writin' letters again.

What do you think I should do?

Blog Awards! Yay!

I am delighted to receive these blog awards from EBC over at Our New Plan A :D

Thank You!!! :D


They come with a few rules though, so I will do my best to do this right :)


1. Link back to the person who bestowed the awards on you (yup).


2. Tell us 7 things about yourself, for each of the awards (total 14 things):

1. I'm a web designer and graphic designer by trade, and I currently tutor design at the local institute of technology. It's the best job I've ever had, because it tests my problem solving skills and makes me a better designer. I've got a great bunch of people to work with, and my boss was actually my favourite tutor back when I was studying for my degree!
2. I live in New Zealand with my husband of 2 years and my cat, Chomsky. Currently, my cat is outside in the back garden stealing the bread I put out for the birds. He doesn't think I can see him :P
3. I have 3 teenage step kids, and they come to stay with us every second weekend. It's a timeshare arrangement! I have learnt that our house is far too small for 5 people to coexist without killing each other. Our house is still small when they're not here, as their bedrooms are of course still filled with their stuff.
4. Although I am a designer and an artist, I do not have a studio at home: no room. So that is perhaps why I enjoy web design so much now. Just sit anywhere with a WIFI connection and a power source and my MacBook is good to go.
5. Last night I made 58 muffins. Today is ANZAC day here in New Zealand and also in Australia. I made the muffins for ANZAC day lunch. We organised for MIL and FIL (who is 83 and frail, uses a walker) to meet us at the parade in town, and we went to collect the 3 sprogs (as it was not our weekend). It's also Easter weekend. The kids have faaaaaaaaar too much chocolate. I was not amused when they demanded to know where our easter eggs for them were. sigh. (Oh, and MIL brought marshmallow cake from the bakery, so everyone wanted to eat that instead. Yay :S )
6. Hubby and I are infertile as a couple. He has obviously had 3 kids with his ex-wife, and it was also during that marriage when he was persuaded to get a vasectomy. The youngest is now 10yrs, so we know the vas is too old for a good chance at a successful reversal.
7. I am in the strange position of being an infertile woman (in a couple) who is technically not infertile at all as an individual. I have primary infertility (never had a child) while hubby has secondary (or perhaps is it quarternary infertility, since actually he can't get me pregnant with his fourth?). We've been on this journey for a child now for over 7 years. Our current stumbling block is simple: money. We haz none. We have been denied access to publicly funded fertility treatment (for 3 years) because the NZ government doesn't think that being infertile due to sterilisation is enough to warrant immediate attention. Like it doesn't cause enough emotional pain and suffering or something.... go figure. I won't dwell on this stuff in this post, if you would like to know more, check out the archives on the right >>>   :)
8. I love gardening. I've spent the last 3 days with my Mum weeding my vege garden and front flower garden. It's a big job, and it's nearly winter so everything is wet. We got rained on several times. Yesterday I planted cabbages, silverbeet, broccoli, spinach, spring onions, beetroot, carrots, 2 kinds of lettuce (buttercrunch and lollo rosso), and cauliflower.
9. My favourite place in the world is with my husband, wherever that may be.
10. Our favourite place together is probably our little beach hideaway up the coast, where the fishing is ok and the cellphones don't work.
11. I am addicted to my iPhone.
12. I credit my iPhone with a 2% drop in my HbA1c test results. How? I got an app called "Insulin Calculator", which mimics the bolus wizard on an insulin pump.
13. Oh yep, I am Type 1 Diabetic, on Multiple Daily Injections of Humalog and Lantus. This year will be my 23rd anniversary of diagnosis.
14. The house I live in used to belong to my Grandmother. The walnut tree that I'm looking at originally came from her mother's place further up North. So that walnut tree is my link to my Great-Great-Grandmother. It makes seedlings all over the place, so plenty of my family members have got walnut trees growing all around the province now  :)
15. And one for luck: Went to the dentist (finally, after 3 years!) and he wants to book me for 3 more appointments, and a trip to see an orthodontist. Someone asked me the other day how much it will cost. I said "All of it!" :P

3. Award other bloggers 

The Versatile Blogger award is supposed to go to 15 "recently discovered bloggers" and the Stylish Blogger award is supposed to go to 10 - 15 blogs "you feel deserve this award".

If you find your name below, I have given you both! (but you can just do one if you like, or none even! Your choice.)

Hope you've had a great Easter and ANZAC day :D

Christa at http://icantcontroleverything.blogspot.com

Sam at http://pancreasonmybelt.wordpress.com

Vicky at http://waitingforstork.blogspot.com

Layne at http://laynenp.blogspot.com

Juliane at http://mommytobe09.blogspot.com/

http://chasingachild.typepad.com

Bridget at http://ourstorkgotlost.blogspot.com
Kim at http://www.textingmypancreas.com
Haley at http://www.naturallysweett.com
Siobhan at http://clickofthelight.blogspot.com
Kerri at http://sixuntilme.com
Serenity at http://exploringchaos.com
The Mamas at http://bionicmamas.blogspot.com
Cattiz J at http://cattiz.blogspot.com
tbean at http://alittleturtle.wordpress.com
Julie at http://www.alittlepregnant.com
JM at http://accidentalstepmom.wordpress.com
Blair at http://theheirtoblair.com
Marcia at http://www.the123blog.com
Saffy at http://www.t1mommy.com

There, that should keep everyone busy for a while :P

(p.s. this is nowhere near everyone in my Reader account! I didn't realise I subscribed to so many talented writers and bloggers! :D  )

Truly random shopping

The best way to ensure you get an exciting range of groceries when you go to the supermarket is to.....




....yes?




.....of course! Have a hypo! Why didn't I think of that?!

Last night I was super-tired from a really long hard week, but we had the step-kids to stay for the week so we had run out of groceries. I still don't believe how much 3 teens eat!

Anyway, so I drove to the supermarket at about 8.00pm, got a trolley, and wheeled through the fruit'n'vege section picking bananas and mixed nuts. Slightly random, but nothing to be too worried about.

By the time I got to the cereal and juice aisle, I was yawning so much people were looking at me. Like, huge, uncontrollable, too-big-for-my-mouth yawns. I was feeling cold, and my eyesight was getting a little flickery.

Next aisle: pasta, rice, sauces, soups. Something is feeling very wrong. I am gripping the trolley quite tightly, and driving very carefully. The supermarket staff are re-stacking the shelves. There are boxes to drive around. For some reason, this is getting very difficult. It takes all my brain power to appear "normal".

Closing in on the chicken soup, I tell myself "my vision is flickering: something is wrong. DO A TEST YOU IDIOT!!!!" So I stopped and tested right there in the aisle.

2.3 mmol/L

OK, you will have some food in your purse. Dig in and find it. One lonely fruitbar = 15g.

Drive trolley until a shelf-stacker can see you pull the bar out of your purse, and not steal it off the shelf (silly, the things my brain devotes power to in an emergency situation!). Rip plastic wrapper off bar, stuff into face. Chew. Swallow. Repeat. Strange looks from the small asian woman with too much makeup just to be stacking the tinned tomatoes.

Complete another two aisles. Choose things that I think are appropriate. Things I think we need. Realise that a single fruit bar is not enough to combat a 2.3. Start to crave juice. Walk the trolley back to the juice aisle. Make the conscious decision to get juice, then get out.

Get a multi-pack of juice boxes. Gripping the trolley quite tightly now. Must look like a ghost, as the check-out chick asks me if I am ok. Hold on. Wait until it's paid for. Wait until you're outside (stupid brain with low-logic!). Add several chocolate bars from the impulse-purchase shelves at the checkout. By some miracle, I was able to remember my pin number once I had swiped the card, and complete the transaction. Whew.

Concentrate on getting out to the car. I have no memory of putting the groceries into the car, or taking the trolley back. I do remember telling myself: "don't start the car. Don't start the car. Eat the food. Sit there and eat the food and WAIT." Do you know how hard that is? When all you want to do is get home as fast as possible? Away from these people who all seem to be staring at you? It's dark, the carpark is suddenly a very scary place. I cram chocolate bars into my mouth and sit, waiting, for 10 mins to go past.

I get home OK. Uneventful. Drag bags of groceries inside. Hubby immediately sees something is up. Apparently I look really pale. My legs ache. I take a 15 min nap, then a really hot bath to get rid of the leg aches. A Friday night I hope to forget.

*p.s. had to go back this Saturday morning to get the rest of the things I'd forgotten! haha :P

Here's the beastie!

All my case notes from the Hamilton clinic of Fertility Associates arrived yesterday.

I saw the envelope in the letterbox and I had to just grab it and basically run to the front door! I was so nervous. I put it on the chair without opening it, and looked at it. This was the moment I would finally see the dreaded CPAC form that the clinic had used to deny us funding for fertility treatment. Then I decided I was being silly and tore into it. Here's what I got:

CPAC form - the real one that FA used to score us   :(

You may not have immediately noticed, but see if you can spot the difference between the form above (written not by the Ministry of Health or any other official government body, but by the very clinic manager who has been such a pain.in.the.arse to me) and the form below...

Link to the PDF of the CPAC form I had found on the Bay of Plenty DHB website.

Picture of "official" (as far as I know) form:

The CPAC form that I found online. Spot the difference?

I dunno, the form from FA just looks bogus. There are many differences between the two, but perhaps the most surprising thing is that instead of scoring us the way I had expected, the numbers are a little different too.

For instance, obviously the consultant from FA had only given us a tiny score for "Duration of Infertility", but she had also, unexpectedly, given us the highest possible marks for "Number of Children". I thought that we would only get an (8) for that question, but since the FA form is worded "Children at Home" rather than "Number of Children" we scored a (30). Which was a little say of sunshine in this paperwork quagmire! lol :P

Yeah, so instead of getting a (50) for "Duration of Infertility", we only got a (20). Stinky poos. The form obviously doesn't say ANYTHING about penalising us because hubby has a vasectomy. In fact, the only other place we lost marks was the question "Sterilisation", where we got a (10) half marks.

FA gave us a 60. Minimum pass score is 65. I thought we were due a 68. Turns out we are due a 90!!!

Well! That's more like it!

Now, I only have a couple of things to do:

Contact the Doctor who was on the advisory board that figured out how the CPAC form should be made. Hopefully he will be able to answer my questions about the form. I'm pretty sure that the one FA is using is NOT identical to the "official" one authorised by the National Health Committee.

Contact my diabetes endocrinologist, and share this news with him. He's been really helpful and supportive of this crusade so far. I'm sure he will be most interested.

Contact the advocate from the Health and Disability Commissioner's office, who, unfortunately, gave me a defunct email address so has received nothing I've sent her for the last month. Dumb. Phone it is, then.

Update the Member of Parliament. He's promised to contact the Ministry of Health on our behalf.

Get-writin' my letter of complaint to Fertility Associates Hamilton. Because, no matter how this turns our, so far I am not impressed.

I am incredibly relieved that the CPAC form FA sent me proves my theory, so far. My theory that they have illegally and unlawfully discriminated against us and artificially lowered our score by 30 points, OR perhaps, they just don't know how to use the form properly. Which, for a medical establishment, is a worry in itself.

I think that the first option is more likely. That way, FA are hoping we will give in and pay for private treatment. But we just can't afford it. And this is putting my life on hold. I have to do this right. It's a delicate situation, like trying to hold a jelly in your hands without letting any slip. I feel like if I give too much away, show my cards to early, FA will just steal all my hard work away and not change our score. And not let us have access to funding, or treatment, or pregnancy, or birth, or motherhood.

A sneak peek preview

Today I celebrate 100 posts and 20 followers (Hi you lovely followers you!)

I am giving you all the opportunity to help me in my mission to get funding for our IVF.

This is my letter that I am planning to send to my local Member of Parliament. If you can spare me a few minutes to read it, and comment or email me with your thoughts I will be forever in your debt. I really need to know I'm doing the right thing here, saying the right thing. This letter could win the battle for us. What do you think?

Also, in case you're curious, here is the CPAC form as mentioned in the letter.

Thank you thank you thank you for reading and helping me fight for justice!

xxx

Kaitake

Oh my Grrrr!

So, in response to my last post which talked about how I was having trouble writing the letter to the MP, I have since sat down and written a pretty good draft. No it's not done yet, but it is a LOT closer.

I've been at work, and not really working, rather, I've been investigating mountains of reports and documents relating to infertility funding in New Zealand.

So far I have found the following interesting documents:

1. National Specialist Guidelines for Investigation of Infertility, Priority Criteria for Access to Public Funding of Infertility Treatment (This is a copy of the dreaded CPAC form)
2. Assisted Reproductive Technology: The Aotearoa/New Zealand Policy Approach (A thesis by Lynne Patricia Batty)
3. Access to Infertility Services: development of priority criteria (A report to the National Health Committee by Wayne Gillett and John Peek)
4. Costs and Effectiveness of Infertility Services in New Zealand: A Decision Analysis (Wayne Gillett, John Peek, Richard Lilford)

I found the CPAC form (1) online last night, as part of research I was doing while writing my letter to the local MP. I couldn't believe it. All this time, and I tripped over it by accident!? Sigh. At least I have a copy now... although this one is dated 2001... remember that when we got scored to see if we were eligible for access, the fertility specialist would not give us a copy of the CPAC form? Yeah, well turns out there might be a sinister reason for that.

Document (2) is a thesis written in 2002, and I've only got a couple of pages into it so far. But it looks interesting so far, perhaps useful...

Documents (3) and (4) were perhaps the most brilliant "finds" after the CPAC form itself.  I knew they were in the local library at the tertiary institute where I work. I just couldn't figure out a way to get them without a) the librarian looking at me over her spectacles with a questioning face, and b) having those two reports forever listed on my library record at my place of employment. I don't feel ready to scare my *new* employer like that just yet!! :P

But I had a plan. A cunning plan, so cunning if you put a tail on it you could call it a weasel!

The work library is currently being renovated, and the students are still on holiday. The door is pretty much blocked off as the builders are busy sawing and nailing etc, but I chatted to one who let me into the dark library. There was only one staff member in there working in a back office, so I went quickly to the shelves to get the books. Then I photocopied them in their entireties. No permanent record. I have complete copies that I can scrawl all over at my leisure. Excamallent. :) Quite pleased with myself.

I wish I could put digital copies up here for you to read (should you need to), but they are super-long and it would take forever to scan them. If you are interested in reading them (i.e., you're in NZ and fighting an infertility treatment funding battle) contact me and we can discuss postage.

Basically, I am hoping that all of the documents and reports I've found will support our case that we believe we have been discriminated against and unfairly denied funding. So far so good, all the documents are working in our favour.

Now, I've been checking the Fertility Associates website about every month, just because they do put new information up there. Would you believe it - they have changed the rules for eligibility for access to public funding! They now state, in black and white on their website, that:

Factors which reduce CPAC score – but funding may be possible:

• Having one child12 or younger living at home
• Having had a vasectomy or tubal ligation.  Where one of the couple has had a vasectomy or tubal ligation, duration of infertility for CPAC scoring starts from when the couple first see a doctor about having a child.

OMG. That was NEVER up there before.  :(  And it is not a part of any of the other documents I've found, which deal with how to decide the rules! (My heart sinks. Hope once again tries to fly away.)

I think that Fertility Associates is being discriminatory; I think they are adding their own rules ON TOP OF THE CPAC FORM.

So, without an actual current CPAC form, with associated documentation to go with it, I can't be sure. I have a gut feeling, but I can't be sure.

And just out of interest, I scored us myself. Remember how the fertility specialist gave us a score of 60? Well, when I did it, I got 68. Which is a pass. Suck on that Fertility Associates!

/sorry, grumpy :(




::UPDATE::


I have just gotten off the phone with two lovely ladies from the hospital who's website published the CPAC form. I asked them: "You know that CPAC form for infertility you have on your website, it's dated 2001, is that the most current version of that form do you know?"

And lo and behold, the nice lady in Elective Services did know. Yes! It's current, Yes! They update them regularly. So that makes me hopeful again. Because it means that the fertility clinic, Fertility Associates, has less of a leg to stand on when they say the duration of infertility is calculated from the date of the first doctor's visit. Because NOWHERE on the CPAC form does it mention that. And NOWHERE in the documents (3) and (4) above does it say anything about it either. Because it's a stupid made-up rule of Fertility Associates, that they are using to weed out couples/people who don't fit the traditional notion of a pretty little infertile family. That's what I reckon anyway.

But yay! Now I know that the CPAC form I have is the current one! Everything just feels a little more stable and hopeful than it did when I read that bit on their website (see above).

30 things you might not know about my invisible illness

OK, so I'm leaving this a bit more than late - Invisible Illness Awareness Week is now officially over. But hey, just cos I missed it doesn't mean should miss out, eh? :)

1. The illness I live with is: Type 1 Diabetes

2. I was diagnosed with it in the year: 1988

3. But I had symptoms since: I was 5 at the time, so I don't remember the exact timing of stuff that far back. I do remember walking in town with my family, and repeatedly asking for a drink, and being given a can of (normal) lemonade! I also remember getting really skinny and earning the nickname 'stickthin' at school. I also remember that shortly after I was diagnosed, it was my 6th birthday, and my Mum had no idea what to make as a cake. Being the inventive soul that she is, she made a "plain" cake and "iced" it with cream cheese decorated with kiwi fruit! Let's just say my 6 yr old friends didn't know what to think of that! :P

4. The biggest adjustment I’ve had to make is: None. I've had this so long that it has become a part of me. I barely remember what it was like to not be diabetic. This IS my normal. Of course, whenever the drug companies make a new insulin, that's always a major adjustment to get used to.

5. Most people assume: That T1 is just a "worse" form of T2. It's not. They are 2 completely separate diseases and I am beginning to see the logic in two very distinct and separate names! Some people also assume that

- I can't eat ANY sugar

- I can't eat salt (WTF?)

- I can't eat chocolate (gimme gimme!)

- I just have an injection and that fixes everything

- that it's similar to mild asthma - when I explain the daily rituals and routines I go through, most people are quite amazed I get any work done at all!

6. The hardest part about mornings are: waking up either really high or really low, as either result is guaranteed to wreak havoc on my day.

7. My favorite medical TV show is: House. It's funny.
 

8. A gadget I couldn’t live without is: Well, the obvious answer is my glucose meter (Optium Xceed), but I could just get another one. Maybe my iPhone. I love my iPhone! I use it to calculate insulin dosages and control has gotten better since I started doing that :)

9. The hardest part about nights are: those common occasions when I go low and have to get out of a snuggly bed to fetch juice or biscuits. Or, those very rare occasions when I wake up in accident and emergency with the worried faces of my husband and parents looking down at me :(

10. Each day I take __ pills & vitamins. (No comments, please) No pills, just Lantus and Humalog insulins. Between 5 - 10 injections per day. Oh, I was taking a pre-pregnancy supplement and iron pills, but since I have to wait...let me count, 25 months to wait before we can even go on the waiting list, and another 18 months after that before we may actually be able to start IVF treatment, I kinda stopped taking them :( Believe me, I will do anything I can to start taking those pills again!

11. Regarding alternative treatments I: Sometimes I take garlic capsules, and I like a good lemon-honey drink for a sore throat. I also love a good backrub.

12. If I had to choose between an invisible illness or visible I would choose: I dunno, invisible I suppose because that's what I'm used to. I get annoyed when people don't understand, but then I realise that if I tell them, then THEY KNOW. And that can have both positive and negative side effects :P

13. Regarding working and career: I think it's completely unfair for folks with a chronic illness to just have the same number of paid sick days as "normal" people. When I get the flu, that's a sick day off work. But what about when I've had a really bad low at night? I look fine, but my brain may be completely fried! Not fair I tell you!

14. People would be surprised to know: Just how much diabetes can take over a person's life. I think I would be a completely different person if I hadn't been diabetic. I think I would have been much more out-going and perhaps less focused.

15. The hardest thing to accept about my new reality has been: I didn't get a choice. It was just something that happened: Get on with life.

16. Something I never thought I could do with my illness that I did was: write this blog! :D
 

17. The commercials about my illness: Are terrible. Not only because they make sweeping generalisations and play-up to stereotypes, but also because they often get things wrong. I also hate the way patients are seen as dollar signs. Makes me grumpy just thinking about how some people profit from other people's illness!
 

18. Something I really miss doing since I was diagnosed is: Eating milo sandwiches, with lashings of butter and brown sugar, on white bread with the crusts cut off. This was my Aunt's speciality. Haven't eaten it in about 22 years.
 

19. It was really hard to have to give up: Can't remember back that far, didn't really have any food habits to give up.
 

20. A new hobby I have taken up since my diagnosis is: So many to choose from! Kung fu, silver smithing, painting, photography, gardening...
 

21. If I could have one day of feeling normal again I would: Figure out how to make it the next day too!
 

22. My illness has taught me: to stand up for myself and question everything a health professional tells me.
 

23. Want to know a secret? One thing people say that gets under my skin is: how many sugars do you want in your tea? Just, goddam it, give me the sugar bowl and let me decide!
 

24. But I love it when people: like me for who I am, not what I am.
 

25. My favorite motto, scripture, quote that gets me through tough times is: Do not be afraid of perfection, you will never reach it.  -- Salvador Dali, surrealist painter.

 

26. When someone is diagnosed I’d like to tell them: I will be here to help you if you need it.
 

27. Something that has surprised me about living with an illness is: The fact that I perhaps get better medical care than a "normal" person because diabetics get shunted to the top of the list.
 

28. The nicest thing someone did for me when I wasn’t feeling well was: Look after me.
 

29. I’m involved with Invisible Illness Week because: I just read about it, and think it's an excellent idea :)
 

30. The fact that you read this list makes me feel: happy that you want to stalk me and find out everything about me haha! :P