Our initial RE appointment - take 2!

So, we have finally started this thing.

For months, years, it has felt like I am running, moving my legs like a cartoon, trying to gain forward momentum but never going anywhere. As if my legs couldn't gain purchase on the ground. As if I was not even touching the ground. Yesterday the ground was raised up and my toes dug into the soil and I have taken off. Forward. At last.

I have written previously about the veil of grey lifting off me. Now it is like the massive, oppressive weight of uncertainty has lifted. I wasn't even conscious of the huge effect this was having on me until it was gone. I am laughing and joking and the tension has melted somewhat.

We travelled to Hamilton for our second "initial consult" at the fertility clinic. Because the first didn't go so well.

This was were we talked with a reproductive endocrinologist about what we will do to try and get pregnant, to try and have a child together.

We need sperm retrieval surgery, IVF and ICSI.

Things will become official shortly when we get the letter saying we formally qualify for public funding. That letter will contain a date which will be our starting "month" for IVF treatment. Prior to that (about 6 months from now) my husband will have sperm retrieval surgery. And then IVF will occur about 18 months from now. It may be sooner if someone else on the program pulls out.

We spoke to both the RE who explained the procedures and the nurse who will be assisting. Neither of them seemed to have much experience with T1 diabetic patients, so I will be hunting down as much research as I can about how IVF drug therapy affects blood sugars. The nurse even told me outright that she had never worked with a T1 diabetic patient before. She told me that I should expect to "have to contact my diabetes management team at least 3 times while undergoing IVF treatment, you know, to monitor my blood sugar levels and adjust insulin, because you have to maintain a good level" Arrrrggg! said my inside voice. My polite, outside voice said something like "actually, I test my blood sugar about 15 times a day and do about 8 injections, all carefully adjusted by myself, too. I also have a pretty good HbA1c of 6.1%" The nurse did look a little flabbergasted at those numbers. I suppose she is used to having patients freak out at the prospect of injecting themselves once per day for a measly 2 weeks, not 8 in a day for 24 years! I wanted her to know what she is dealing with, and now that she has time to learn about T1, I hope she makes the effort. Both RE and nurse said they will work with my GP and my diabetic endocrinologist, which pleases me.

We opted to do an AMH blood test, which measures ovarian reserve. This will allow the RE to select an appropriate drug protocol for me out of the two choices she's whittled it down to. One is a 4 week protocol, and the other is a more popular 8 week protocol. The nurse made noises like she would put me on the shorter one, so my diabetes is less affected. But I said we want the one that will have the best chance at a good outcome. The $100 AMH test will be making the decision for us. Hopefully it is good news. Bad news would mean we have to act quicker, and as you know we can't afford to pay privately for treatment.

So nothing is set in stone, but is just an amazing feeling for me to know that we are on the waiting list now. Nothing tangible has changed, it's all still quite theoretical, but it's a huge change for me and I must say I feel amazingly light and, dare I say it, buoyant.

We got given a pack of phamphlets and books and a DVD. We have consent forms to sign.

I've been put back on 5mg folic acid, and will stay on it every day for up to 18 months+ We have to try and avoid caffeine, tea, coffee, and green tea even. (Being a T1 diabetic means that the only liquids I currently drink are water, milk, juice for treating lows, diet coke but not so much now that I get migraines from the aspartame, and black tea. God, I am going to miss my tea) Maintain ideal BMI. Be good. Take vitamins. Exercise.

There are a thousand details and questions, but the main things I took away from the appointment are that:

1. Yes, I can work with this woman (RE), the one who destroyed my life 2 years ago. We will not be friends, but we will be able to have a professional relationship.
2. We are finally getting some progress. We are finally starting. It is amazing to be here after fighting so hard for this.
3. Surprisingly, we will get Hubby's part of the procedures done much sooner, so it will break the time up and make the new wait easier. The logical corner of my brain knew this, but 
4. We can start to plan ahead tentatively. Things like accruing up some extra annual leave.
5. Have found a great motel, and little things like knowing where we will be staying are important to me, the control freak lols :P

Yeah so that was positive, I am happy, it's good news.

We are starting. We have come full circle back to the start.

There have been some positive happenings around here. Nothing super-dramatic, rather, it's like a veil of grey has lifted off me and I can now look forward.

What's caused this? Well two things:

1. We have an appointment to see the RE in August. We got this appointment because I asked for it. I asked for it after my diabetes endo put the idea in my head that the clinic probably wouldn't chase after us, since we're not tasty private patients. I sent a bunch of questions and am now slightly clearer on the process. Now awaiting the official appointment letter and blood test forms. We will get onto the public waiting list in September, and from there the wait will be between 13 - 18 months.

2. The Health and Disability Commissioner's office contacted me this week. Although they can't perform miracles, they seem very interested in the way we've been treated, especially the poor breakdown in communication. Awaiting further contact from the HDC.

So yes, I finally feel like I've stopped looking back and can now look forward. I still get really angry when I think of what's happened, and I still feel pretty terrified about what we are fighting for the right to go through (IVF, TESA/PESA, ICSI, pregnancy, birth, pregnant-with-T1, baby, toddler, kindy...), but it's a good terrified. Lol :P

I watched

I watched my father-in-law die today.

He was 84 and had been in a rest-home for a while. Had a GI tract upset over the past couple of weeks, not helped by large doses of iron tablets. Complained of gut pain but otherwise his normal cheery self. But very weak.

This morning the home rang my husband. It was urgent. An ambulance was called. I received the message and bolted to A&E with tissues and juice and hair still dripping from the shower. That was about 10am.

Met husband, mother-in-law and eldest stepson in the resus-room. My husband's ex-wife's-Mum brought the other 2 kids in.

The doctor explained that they suspected he had ruptured his lower aorta, but after ultrasound checks decided it was more likely to be either a ruptured bowel or clot preventing blood reaching the bowel.

FIL couldn't talk and he was having lots of trouble breathing. The hospice nurse was called and she spoke of "changing focus".

FIL was given more fentanyl and later morphine for the pain.

He passed away at noon, surrounded by love.

We are ok. Very sad, but grieving positively. There have been floods of love and support from everyone touched by this.

Complaints-ahoy!

Hi folks, so sorry it's been so quiet here recently. I've moved all the diabetic stuff to another blog so I can talk to a wider audience, while the IF stuff will stay here. It's just that there has been NOTHING happening!

Until today: I visited the HDC advocate again and got my letters of complaint finalized. Wow. What a lot of paperwork! My HDC advocate has been amazing and so helpful. I wrote a massive letter to the Health and Disability Commissioner himself, and my advocate basically guided me through the process. Which is thorough!

So it's in the post today, and it could be weeks or months before we hear anything back.

There are a couple of different potential outcomes. The Commissioner could:

- choose to take no action.

- direct the complaint to some form of medical board (didn't hear this option clearly)

- send me back to low-level advocacy i.e. If I want to keep fighting then all that would be left is writing individual complaint letters to the different providers (up to 5 letters)

- or my preferred option, where he decides that the whole system needs to be reviewed at a systemic level; the law is changed.

OK now I'm not expecting miracles. I don't think this will actually make our wait shorter or the process fairer, but as the advocate said: all these complaints add up and become part of their statistics; if others have also complained about the unfairness of the infertility treatment funding system in New Zealand then it could add weight to the stats.

So, now we wait. At least I know I'm good at that!

Visit to see an HDC advocate

During the term break, I called the customer service line for the local District Health Board to see if they could help. The nice guy there directed me back to the Health and Disability Advocacy service, which made sense. Although I'd already been there several months ago - and was advised that the HDC couldn't actually help in my case.

Well, I took the customer service rep's advice anyway, and emailed the HDC again for advice. The local advocate suggested I come in for a meeting with her. I wrote a "summary" (read: 9 pages) of our story, and off I went.

Well she was lovely. We spoke for over an hour and a half!

Turns out that I have 3 basic options:

1. Write letters to each of the health care providers who have given me/us bad service throughout this process.
2. Send my story to the Health and Disability Commissioner himself.
3. Do nothing.

By default, "doing nothing" is what we're already doing - just waiting out our time.

Because it won't take me much more work to write a cover letter and send my story off to the Commissioner, I think I will do that. I honestly don't expect it to have any impact on our case. It will probably take up to 8 weeks for a response to come back, and then he will have to make a decision on what direction our case should take. The Commissioner probably can't reduce our "penalty time" and even if he could, by the time the paper work is waded through, we will most likely be only our 18 month time of the waiting list anyway.

I'm fine with waiting lists, but not with illogical pseudo waiting lists. They suck.

The other option is to write letters to each of the providers concerned, telling them that their service is the pits and to pull up their socks. Again, I couldn't expect more than an apology letter from each of them, and at this stage I don't care for a bunch of useless apology letters.

I want to look forwards, not backwards. And that is a massively different way of looking at our situation, for me anyway.

Right now you're thinking "so what's the point of writing off to the Commissioner then?" Well, he has the power to review systemic problems and suggest changes. And that's what I really want. Well, that's what I want next to having our waiting time wiped. If the discrimination could be removed from the system then that would be incredibly positive. At this stage, that's all I can hope for, as there is nowhere else to turn to. I have literally tried all my options after this letter.

The good news is, once we finish waiting out 4.5 years (penalty time + waiting list) we will then be able to access fertility treatment.

It's just such a long way off.

A little bit of awesome HbA1c-ness

I know I know, no posts for ages and then 2 in one day :P

But look at this!

Screenshot of TuAnalyze data graph measuring my HbA1c results over time.

I am holding steady on HbA1c result of 6.5% Yay! :)

(that's a 48 mmol/mol in the new numbers)

And now I will document how I got there. No it wasn't anything strenuous or taxing, but it was consistent.

I kept looking for the best way to use the data from my blood tests. Knowledge is power, after all.

That's it.

I figured, that since I test so many times each day, and record each and every one, plus what I eat, that there must be a way to use the data more effectively. Like, perhaps in a way that I could see long term trends happening, or find patterns.

My Endo and Diabetes Health Nurse are always looking for patterns, and I can never see them.

I used to use a paper logbook:

My old paper log book. Each horizontal row = 1 day. Note the classy blood smear top right.

Then moved on to using that together with the iPhone App Insulin Calculator to work out my insulin dosages more accurately. This really made a great change, and if you look at the TuAnalyze graph above, it is what I credit with the drop from 8.1 to 6.7.

More recently - like in the last 3 months or so - I have added another App built by the same folks, called  simply Diabetes Diary. The great thing is that these two Apps link together, so I don't have to enter data twice.

It gives me weekly averages graphs. This is what my "day" way like when I started using the Diabetes Diary App.

I just go into Insulin Calculator, type in my blood sugar and enter what carbs I eat, it works out the number of unit insulin to give - and oh yeah! you can easily adjust your insulin to carb ratio throughout the day! Super precise - then just tap the "take it to Diabetes Diary" button and it's there. Too cool for school I reckon.

And this is what my "day" is averaging out to now. Quite an improvement I think.

It feels like the most advanced technological solution I'm going to achieve without an insulin pump. I'm using 2 injections of Lantus every 24hrs, plus between 3 and 6 shots of Humalog a day.

My week, in real time. I just ate a doughnut, hence the uppity spike-ity bit.

I really like these two Apps. They are very handy and I credit them with increased stability in my blood sugar control. No debilitating nighttime lows since I've been using them, touch wood.

It's good to be able to crunch the data too, like seeing time of day averages for before breakfast, post-prandial breakfast, before lunch, post-prandial lunch etc. This enables me to spot any crazy business, and I can check it with the average day graph.

But you know the main reason I got it?

The graph above. Last Seven Days. When I started logging my blood sugar (well, actually it was my parents) we wrote the details in the log book and then drew the graph by hand. We even used the spent test strips (you know, the ones you wiped the blood off and they changed colour? Really long plastic ones that took about 5ml of blood) as little rulers to keep the graph lines nice and straight and accurate.

Did that for about 15 years. Then was told they had stopped making that graph-style of log book, so I would have to switch over to the horrid chart style. Yucky. Didn't ever really like it.

So when I noticed all these DOC folks showing pics on their Dexcom's and CGMs of graphs, I thought, hey! We were doing that after a fashion ages ago!

And that is the story of why I went hunting for a diabetes iPhone app with a decent graphing feature.

- - - - - - -

Currently use Lilly Huma Pen which is metal and has half-units for the Humalog, and the disposable prefilled pens for Lantus. Blood meters is Optium Exceed. Gotta love their crazy take on the English language.

Some positive movement

I have just had a week off work, for mid-term break, and I did not really enjoy it very much.

It started out because I was lonely, and then, because all I could think about was IF. It was driving my brain around in circles so that I was having palpitations, stress, anxiety, and panic.

Since I had a lot of projects to work on, I felt guilty for allowing my brain to wallow like this. But trying to do other things just made it worse. I find it very hard to be creative, and impossible when my mind is clouded with the thick fog of IF doubt swirling.

So I got on the Interwebs. BIG MISTAKE!

I found what seemed to be a lovely online community right here in NZ devoted to IF. Wow! Where have you been hiding I thought?

You may or may not remember that my last IF-based decision was that the fighting was making me ill and Hubby and I agreed to give it a rest. Just wait.

Well that's all fine, except when I did a quick count and realised that it would be a few years yet before we can get treatment.

So I posted on the forum. HUGE MISTAKE!!!! For these were not supportive IF folks, of the type I've experienced on US and UK forums, no, these were Kiwi chicks who wielded their claws, spat, then closed ranks on me. Me! Another infertile! Honestly, I've never been burned like that, or misunderstood so well. And it was a whole flock of them. I'm not going to write specifics or link to the forum, as that would just give them more power, but lets just say that they completely demeaned and belittled both me, my husband, and our struggles.

Sigh.

So, feeling like complete and utter crap, I did what you do in that situation. I went to walk the dogs with my sister.

She pointed out that although they were nasty on the forum, they were right in the fact that all we do have to do is wait. It's only another year. And she's right. One more year and then we will be off stand-down time (or penalty time as I like to call it) and onto the waiting list.

Let me be clear here: I have NO issue with waiting lists. Sure, they suck, but they are logical.

Stand-down years, however, are not logical. They are a pseudo-waiting list. And that is very suspicious to me.

So my brain which had been moping and wallowing and freaking out turned into a "let's get this show back on the road" type of brain!

Ok, so maybe I ate some chocolate during this process. How can you tell?

I got thinking about where I left off with this paper work battle: the Minister of Health had advised us to contact the CEO of our District Health Board.

Hmmm. That's a CEO, all big 'n important. Maybe I'll just call their customer service line first...

And what a great thing that was! The guy was super-receptive and very helpful. We spoke for over half an hour, and he gave my synopsis a thorough examination. He even suggested where I could go next for help: the Health and Disability Commissioner.

Oh. Yeah, I kinda been there already.

Him: Maybe you should contact your MP, after all, it's an election year!

Well....I've done that too! And the Minister of Health!

Him: you sound like a very good self-advocate! :)

It turned out that when I last talked to an HDC advocate, she gave me bad advice (remember? She basically told me that the HDC couldn't help because my complaint was "paper work and bureaucracy, not medical or clinical"). The customer service dude gave me the details of another advocate right in our own region to talk to. Said she was a personal friend of his and that she would help however she could.

So I've just emailed her. We wait and see.

p.s. It was very good to talk to someone. It was like my whole body relaxed and I had a sudden creative burst of energy. As a result, I weeded the garden and found the biggest cauliflower you've ever seen. Seriously, this thing is in perfect health, and is bigger than my head. It was also home to about 40 snails haha!