The night before the first IVF injection

Those drugs in the fridge are looming in my mind. Not because of the needles or anything like that, but rather because I am about to step (leap?) into the unknown.

I have no idea if IVF will work for us. We have been given very good chances by our reproductive endo, but still. He also gave us a whole long list of scenarios that could also happen. And I appreciate knowing that things are a bit up in the air at this point.

When I woke up this morning, it was before the alarm had gone off and even before the cat had time to jump on the bed and politely request demand and stomp all over us with wet feet for his breakfast. That familiar cramp. I decided that it was only, maybe, October the 4th??? at best so it must just be lack of a kiwifruit the day before. Oh, I was wrong. This WAS CD1!!! Wow. Never thought I would be telling the interwebs that news, especially not with so many exclamation points lol.

I dug out the phone number for the nurse and called and left her a message. Then I wondered a bazillion things, then ate breakfast.

At work, I kept jumping for the phone. It was my first day back after a short mid-semester break and the change in routine, plus first period with the insulin pump to deal with, plus waiting for the nurse to phone me back with dates and instructions just clouded my brain up real good.

Take some neurofen. Go for a walk with my friend and get doughnuts and hot chocolates. Damn, even the glorious bolus calculator can't figure this one out. Sigh.

She rang and was really personable and happy. Like she remembered who I was and actually cared. I got instructions and dates for what meds to take when, up until day 9 which is when I will need to go in for a scan and bloodwork. Once I got off the phone, I texted Hubby then got online and booked our motel of choice in Hamilton. We are 3hrs away so I will miss a day and a half of work, and since the appointment is early in the morning we will just go up the night before to make it less stressful.

I forgot to tell the nurse I am now on an insulin pump. Thinking about emailing her that info shortly.

My whole focus, my whole energy right now, is on remembering to take the Elonva injection tomorrow. Calmly, and without fuss. I have been harpooning myself every 3 days or so now with insulin pump site changes and dexcom changes, so another needle is not the problem. It's the unknown. I get one shot at this, and if I screw it up with this injection I can't grab another from the local pharmacy or anything.

Oh, speaking of said local pharmacy: I did NOT know that the antibiotics Hubby and I both have to take as part of the IVF stint are not funded. At all. Even worse, because they are prescribed by a specialist, it's a higher prescription charge. Still less than $40 for 4 tablets, but I thought this was publicly funded? I didn't quibble, just paid and decided to be calm.

Other news:

• Hubby has a perfect heart. No really, I know this as a medical fact. Last monday, he dropped the kids off back to their Mum's and then promptly took himself in the the emergency department as he thought he was having a heart attack with chest pain radiating down the left arm with tingles in his hand. He called me at work and we then spent 7hrs in A&E, 3 EKGs, 2 lots of blood work, and a heart attack was ruled out. Stress, they said, but could be angina. So last Thursday he got to do a EKG stress test on a treadmill. They were supposed to get him to exercise to only 80% of the target rate, but pushed him to 110% because they couldn't find anything wrong. Stress, they said. So I have been trying to help Hubby calm down and relax some. He is working the equivalent of 2 x full time jobs, both very stressful. The freelance project with be over soon, and the more "normal" job is offering more security and hours so there is light at the end of the tunnel.
• Last week we averaged a 1hr bike ride per day. Even in the midst of chest-pain-o-rama!
• Holidays are good and I had just remembered how to have them when it turned into time to go back to work. Bah.
• One of our four chickens is sick. She has a sore infected foot and I took her to the vet today. Poor chookie is also now on antibiotics. Enough for a great dane dog, according to the packet!
• Of course, the day I need to be in Hamilton is also the second day of term! I have already provided my payroll lady with a letter from the clinic so I can take IVF days off as sick days which is very good.
• The cat thinks he wants to go to the vet also. He has been catching (big, ginormous) rats and eating just their tails. They, in response, have been scratching him on the eyeballs. Requiring expensive and painful vet treatment and nasty sticky eye ointments which make him think that I never loved him. Poor kitty! I am hoping it's just a sympathy squint cos he saw the cat box I used to transport the chicken in.
• I have a new hobby. I like to burn things. Don't be calling the authorities on me! I am talking about lampworking and making glass beads. Highly addictive and meditative. And beautiful.

Right. Off to take my pre-natal vitamins and watch a video about how to give an Elonva injection. Wish us luck!

My Pump Start Experience - Part 1

I officially became an insulin pumper on 18th September 2013, at 10.19am.

I really wanted to write down what it's like to go on an insulin pump for the first time while it's all still fresh in my mind, so that I have a good record and so I can share my experiences with others online. Although I've seen plenty of blogs written by pumpers, I haven't stumbled across many "pump start" posts that aren't kids on pumps - and I'm a T1D 25+ yrs!

Because there is so much to tell you all, and I am so very tired at present, I've decided to break the writing of this post into a couple of parts. So please follow along!

As yet... still unnamed. Thoughts? "My Pump" is a little boring!

My pump is a sparkly new pink Animas Vibe. Since I am in New Zealand, I was able to apply for - and have received - public funding for this pump valued at NZD $8000. The consumables ~$2000 p/year are also funded, and my first approval is valid for 9 months. I have to reapply after that and so long as I behave myself and show I am making improvements to my health and keeping my HbA1c below 60(?) mmol then I should be fine.

It took several months from the time I made the decision to email my endo and say "Hey, I want to go on a pump! Can you write my application letter?" to actually being approved, to organising meetings with the two pump reps and then coordinating with my Diabetes Nurse Educator to book in the pump start. Which was a bit of a struggle.

But I'm here now, and it's going superbly well. I am completely exhausted, these last 3 days have been incredibly intense, but I think it is going to be a GOOD THING for me :)

My thoughts before...

When I first thought about getting a pump, about 10 years ago, I didn't know much about them. I was scared of the idea of being tethered to something all the time, and I figured that since they weren't funded (then), that I would just have to do my best to emulate a pump with injections. I tried this as best I could, by using Lantus and Humalog, and doing smaller doses throughout the day. I tried to emulate a combo/square bolus by splitting my bolus injection for large meals. I used two apps by FridayForward (I credit them with a 2% drop in my HbA1c) which I heartily recommend as they taught me about I:C ratios, ISF, and blood glucose targets. I last did diabetes education when I was 5. That is 26 years ago!! So I had just been coasting along, doing my thing, but not really keeping up with technology or best practice for diabetes management. So once I got the wake up call from my new Endo that what I thought was good control was in fact, quite erratic and full of fluctuations, I decided to do something about it. I am not sure that any diabetes management would work without that internal motivation, cos every method takes lots of work.

I found Kerri Sparling's blog, sixuntilme, and I pored over the archives there. Suddenly, an insulin pump seemed desirable again, and her writing and videos showed me how a confident successful woman could handle diabetes with conviction. I explored further, finding TuDiabetes and the massive collection of wonderful diabetics online who are all asking questions, sharing, and teaching. My diabetes education was online, it was self-taught, and it was at my own pace. If I saw people talking about "IOB" in a post, I would take initiative and go find out what it was, then see if I could apply that to my own situation with MDI. Gradually, I found the online support network that I had been missing during my teens. I did not knowingly encounter another T1D after I attended my last diabetic camp at about age 12, and I didn't stay in contact with any of the kids as I was too young to realise how important they might be to me later. I felt that diabetes was my thing, it was personal to me, and it made me special. I was the only one who had it. Very surprisingly, I never had any real rebellion against diabetes and my self-management. I just had a whole lot of very out-dated learning that I still trusted in, and being reluctant to change, my new Endo and Diabetes Nurse Educator (DNE) had a bit of a battle convincing me otherwise.

In more recent years, I have been much more vocal about my diabetes. I have become more confident as a person; I graduated, got a job, was made redundant, found a wonderful new job, I broke my back twice, I got married, we decided to start a family, I have teenage step-kids, I started blogging and sharing my story about T1D and infertility. Lot's of stuff, you know: life.

My Endo saw the work I was doing, but would always tell me he had no ideas about what was causing my horrendous fluctuations in blood glucose levels. I was testing 8+ times per day, on a split dose of Lantus (9am, 8pm) with 5+ Humalog injections (I:C 1:8am, 1:10lunch, 1:12dinner, 1:14supper). He wrote me blood tests for everything under the sun, trying to find the magical missing element which was causing all the trouble. But we never found anything.

This. OMG. Go get some and put it in your mouthparts NOW!

In the lead up to the pump start day, I was tense and nervous and pretty useless: I had trouble concentrating, I was getting itchy excema on my back, and my face was trying it's best to break-out. I may have eaten a whole lot of comfort chocolate. Although my logical brain knew that there would be nurses and doctors and husbands to look after me, I was terrified of...something. Most of the time I was ludicrously happy that I was finally going to get to try a pump. And stupendously ridiculously deliriously happy that I was getting a CGM (bought by my wonderful Dad xox). I tried to articulate this strange dichotomy of feelings to my husband, my friend at work, and my Mum, but I could never get them to understand how I felt.

Since we are about to start our first round of IVF in October (less than a month, now), I had this added pressure to have the pump work well. The whole reason and motivation for actually getting off my arse and doing this work to switch to the pump was to prepare for any potential pregnancy. A diabetic friend of mine had been on MDI and when she finally got pregnant and wanted to go on the pump, she was too sick to do so. I knew I had to get this show on the road. And what's more, it seemed that the pump and CGM was waaaaaaaay more complex than the IVF stuff. There, the fertility doctors are in control (kind of). They decide the dosages and everything has a fixed time span. But with the pump I knew I would be doing 2 days training then be trying to do it on my own. It seemed like a much more mammoth task than contemplating IVF. I guess it's just due to the fact that I can be a control freak, and the thought of being out of control with my diabetes didn't exactly give me warm fuzzies.

So, I spent the time organising things. This was partly purely practical, to be ready. But also to fill my time and stop my stupid brain from going into a nervous meltdown of anxiety. Which I did at least twice.

A diabetic from the South Island (Hi S!) made contact with me via email, and it was wonderful to have someone experiencing the same things. I also watched a lot of videos about inserting sites, changing cartridges, and most important: where to wear the pump!? Two nights before pump start I royally freaked out about that, since I decided I only had one pair of pants that would be strong enough to support the weight of the pump. I wear a lot of dresses, and after watching some videos by Candace from Sweetful Stuff and Diabetic Danica, I took action and planned what I could do with my wardrobe.

I spent a lot of time thinking about how it would feel to wear a pump. Would it hurt? Would I be able to do things? What would it be like to shower with things stuck to me? I had these questions so I read forums and blogs to get answers. I stuck a band-aid to my tummy for a couple of days to gauge what it might feel like, and when I did an injection with my pen, I held the needle under the surface (quite still) for half a minute and decided that I couldn't actually feel it at all. Only the sharp bit hurts as it goes through the nerves at the surface of the skin. Ok, it should be fine, I decided.

An impressive big box of stuff. Note: always take the time to look like a suspicious patient and CHECK the box against the script! Bits were missing causing 2 additional pharmacy trips :/

Animas Vibe with cartridges back left and Inset 30 infusion sites and lines back right.

My pump arrived, and the consumables. The folks at my pharmacy had never processed a pump script before so they were really intrigued by it all. I think that pharmacy became my second home this week! lol :P  Then my Dad bought the CGM and that arrived. Soon I had boxes and boxes of stuff covering the lounge room floor. I had read some of the Animas manual online, so decided not to freak myself out by reading the printed one prior to the training. The Dexcom came with a DVD, so I took it round to my parents place and Dad and I watched it together. It was quite tedious, but later I found it so useful as preparation.

Being in contact with my pump rep and asking questions was really helpful, and she made me feel a lot calmer about things, like I would be supported throughout.

Oh, and I had a birthday in amongst all that too!

From my Sweet Husband! Aww!

Look out for my next post: "The pump start"

Met with Medtronic Rep: help me decide

Today, in the middle of the BEST sun-shower ever, we went to meet with the Medtronic insulin pump rep. She brought a bunch of demo pumps and a foam cushion covered in infusions sets.

The best parts:

I got to see and feel a lot of different infusion sets. And we talked about their various benefits and had a go at disconnecting/reconnecting them. I am quite interested in the lower-profile sets, and potentially the angled sets. The rep seemed very concerned about the amount of packaging that comes with the Mio sets, but I think that an all-in-one system is actually a very attractive prospect for a never-pumped diabetic!

She had both the Paradigm 522 and 722 demo pumps with her, plus the VEO which is the same size as the 722. Their main difference is resevoir size; I would only need the smaller size as I don't consume much insulin however the rep pointed out the insulin requirements increase dramatically during pregnancy (hello! That's what we want here!!). So I asked if, should I select the 522, could I get a 722 loaner pump during pregnancy and she said she could probably work something out for me.

Both the 522 and 722 work with the Medtronic CGM system. I do not really like the look of the Medtronic sensor or transmitter. It looks big and clunky compared to the Dexcom CGM. And it has masses of extra tape that goes with it. however, it IS rechargeable. The Dexcom rep confirmed that the Dex transmitters routinely last longer than 6 months, and even over 12 months before their battery goes flat. Humph: money.

The VEO is another kettle of fish all together. It looks just like the 722, but it offers a really advanced feature: low glucose suspend. This is where it shuts off all insulin delivery if you go too low and don't respond to the warning alarms. It's a very attractive proposition, as it would help to fix one of my primary problems: hypos. But it comes at a very high cost. The VEO is not govt funded in New Zealand. The rep said although it's not funded, if I paid $2000 then the balance would be funded. So, it's partially funded? It got confusing. Total price for this puppy? Hold your breath: $12,000.

And that doesn't include the cost of the CGM transmitter or sensors.

Ok, pick yourself up off the floor.

Back to the core decision. Should I get the Animas Vibe pump, or one of the Medtronic pumps?

Here are the main points as I see them:

Animas Vibe / Dexcom

• This is the pump I have been looking at getting for the longest time.
• It has combined pump and CGM.
• It uses Dexcom CGM which is the most accurate available in NZ at present. Animas and Dexcom are currently involved in The Artificial Pancreas Project.
• Waterproof.
• Larger, colour screen.
• Offers smallest increments for insulin delivery. I need this.
• Insulin pump (including CGM receiver) fully funded.
• Dexcom transmitter (approx $1000) and sensors (approx $125 each) are not funded.
• Dexcom sensors last up to 7 days.
• Fancy bolus, fancy basals yada yada yada...

Medtronic 522

• Combined pump and CGM.
• Uses the Medtronic (Enlite?) CGM, which is not as accurate as the Dexcom based on the research I have done. The brochure the rep gave me doesn't even state accuracy!
• Pump is funded.
• As with Dexcom, the Enlite CGM transmitter and sensors are not funded. The rep did not have a price-list with her and is yet to send these to me.
• Sensors last up to 6 days.
• Fancy bolus, fancy basals etc.
• Quite easy to navigate menus.
• Small grey screen.
• Has a back button.

Medtronic 722

• As per the 522, but has a larger reservoir which could come in mighty handy during a pregnancy.
• I am not considering this pump, rather if I went with the 522, I would ask for a 722 loaner during pregnancy.

Medtronic VEO

• As with the 722, but offers additional software that works with the CGM system. This Low Glucose Suspend stops insulin delivery when blood sugar drops and the diabetic doesn't respond to alarms. It has other specialised alerts as well, but the rep didn't explain those very well. She also didn't have a VEO brochure even though she knew I was interested in it. Overall it's a very attractive idea... having hypos prevented for me. Hell, I've had two hypos since going to this damn appointment.
• But it is very expensive and is not fully funded. I'm not even sure it's funded at all, since it doesn't appear on the Pharmac schedule. From the way the rep was talking it would seem that Pharmac is paying funding for a 722 and then the patient is actually getting the VEO. How that works through the machinery of Pharmac funding is beyond me.
• Still have to stump up the pennies for the CGM bits'n'bobs. Wow. This is sounding like it's getting to pricey.

That's all I can think if now. I am quite tired (big field trip with the students today, plus visit to the rep, plus went low twice, plus all the grocery and petrol shopping, plus cooked dinner!) and need a nap.

If you have advice or feedback on making this choice, chuck me a note in the comments :)

p.s. I got the results of my HbA1c back = 41 mmol/L = 5.9% = !!!!! This is the first time it's every been under 6% and I wasn't even trying to accomplish that! I was trying to make it go UP!

I've decided to get an insulin pump

This is the biggest decision I have made since becoming a diabetic 25 years ago.

I have been on multiple daily injections (MDI) since I was 5 and currently I use Humalog and Lantus spread over at least 5 injections a day.

- - - - -

Once, for shits and giggles, I calculated how big of a tattoo I could have gotten if, instead of using all my needle stabs and finger pricks and blood draws for treating diabetes I used them all to put ink in my skin. Turns out that I could have gotten a large full-back tattoo! But I digress...


- - - - -


My HbA1c is good, although I have some almighty horrid fluctuations in my blood sugars and I do get quite a few lows. Yesterday I had 4 lows (under 4.3 mmol/L). And that is of course coupled with some nasty highs too, although I have been working very hard to narrow the range of blood sugar fluctuations I just can't seem to tame them properly.

So why am I making the change? Well there are several important reasons. Yes, even more compelling than the reasons above. I do love a good bullet point so here are some I fashioned jsut for you"

• See this previous post. Yes, we have sperm-on-ice, so that means that IVF is a GO! All going according to plan this will happen in October sometime. Finally.
• Being Type 1 Diabetic means I can do more than just snack on prenatal vitamins, folic acid, vitamin D, and healthy fruits'n'veg. I can also work really hard to get my blood sugar control as, um... controlled as possible. This means maintaining a low HbA1c while stabilising the fluctuations and lowering my range of blood sugar results overall. So no pressure.
• An insulin pump is what I see as the best option for achieving these lofty goals prior to pregnancy. It has also been recommended to me by my endocrinologist, although definitely not as the only option.
• I want to do it before getting into the mix of IVF treatment + potential pregnancy. I don't know how I will respond to an insulin pump and I want as much time as possible to get to know this new treatment method.
• I should now qualify* for a fully funded Animas Vibe courtesy of Pharmac. Last August they changed their funding of insulin pumps so that if you meet certain criteria then you can apply to have one. (* My endo has yet to complete the special authority form, so it's not a done deal yet. In fact, I still have to meet with my endo and my diabetes nurse educator soon to discuss this plan o' mine.)
• I emailed my endo and DNE on the weekend to wave this idea at them, and they seemed to think it was a good plan and that I should qualify. I'm hoping to get appointment times to see both of them about it soon.
• We have spent so much time and effort pursuing the idea of IVF and having a child that it only makes sense to do everything I can to support this process. If that means chomping on vitamins, wearing an insulin pump and completely changing the way I manage my diabetes, I think it's worth giving it a go.
• Continuous glucose monitoring! OMG I have wanted one of these for like, ever, but they haven't been available in NZ I don't think. But now with the Animas Vibe being funded it's quite fortuitous as it happens to be Dexcom CGM enabled. Now I've had a pretty good sniff around online and found that the Dexcom G4 CGM is now available in NZ. Of course there is no pricing but the Animas Vibe acts as the receiver and screen to display the CGM data. So perhaps, without needing to purchase a reciever that will make the combined cost of transmitter and sensors affordable? Maybe? I will have to wait and talk to my DNE as she will know :)

So it's been a weekend full of progress and decisions :)

Preparation for second surgical sperm retrieval

Since the first surgical sperm retrieval procedure (TESA/PESA) failed to produce any sperm, we have been rebooked for another one.

This time, instead of just a needle, it will be a testicular biopsy. A 3cm incision. Last time the needle biopsy wasn't supposed to be super painful, and it was. I can only imagine what this one will be like, but my money would be on "worse". I sincerely hope to be proved wrong: for this procedure to go smoothly and be much, much less painful for dear hubby. Please please please.

There is not a great deal of information about surgical sperm retrieval online, and without trawling numerous forums there is little detail about preparing for the experience either. So I have decided to write down here what we are doing to prepare for this next procedure... which is in 4 days time!

How to prepare for a surgical sperm retrieval procedure (from the woman's perspective):

First, I recommend asking your doctor as many questions as you need. I have a habit of emailing a big huge list of questions to our RE and getting some shitty, unsatisfying responses back. Sometimes it is better to talk to the nurse. Or phone the clinic to get a human to talk to. For this our second SSR procedure, we were basically told everything about it directly after hubby was recovering from the first one. That is no time to discuss future procedures. In fact the RE was even talking about it DURING the first procedure. We have not had any follow up appointments, and I had to badger them a lot for this second appointment. They are really slack in their communication. So don't you put up with it like we have. I only stopped with the avalanche of questions (which, as they were basically going unanswered, was making me frustrated) because hubby suggested that we just chill a bit, let them do their thing and get the next appointment sorted. Points for looking towards the future!

Second, do your research. There are videos of the procedures on YouTube if you're not too squeamish. Familiarise yourself with the various types of procedure, as then you can ask intelligent questions and understand the doctor-lingo so much easier.

Third, don't trust your doctors completely. I don't. I always rely on my instincts and the level of care I prefer for my family and myself is not always the same as what the RE's office is offering. To them this is their work. It is everyday, routine and possibly even slightly boring to them. To you, it is a major event and it can be traumatic. To give you an example: after the last procedure we had to wait around for a while before they would release us, but hubby was still quite stunned from the op. A simple thing like a blanket in the car to wrap him up and keep him warm afterwards would have been intelligent. And it's things like that which you can do, but your doctors can't. So prepare for having a husband who is in a bit of shock and pain, and think about what you can do to make his life easier.

To help with that I have made a list of items we are packing for Friday:

• Ice packs (these should be small enough to go inside the undies, near the op site)
• Non-fluffy gauze pads
• Tight "supportive" undies
• Tramadol (painkiller - no driving for hubby on this one!)
• Panadol (3 x before the op, plus maybe some afterwards too)
• Neurofen (as a backup only or instead of the Tramadol)
• Blanket / duvet (for in the car to make hubby comfy)
• Pillows
• Other meds (it's so easy to forget, and such a hassle when you have to get access to meds outside of your home town)
• Valium (we would like to have 1 tab available for hubby before the op, to calm nerves, but won't necessarily be using it)
• Bottled water (hubby won't have been allowed to eat or drink for 6hr before the op, and water is all he wanted directly after the last procedure.)
• Snacks (choc bars, biscuits, etc)
• Towels (no specific reason, but they can be handy. Think propping up knees or feet to help get into a more comfortable position in the car on the drive home.)
• First aid kit (since we have a 3.5hr drive home after the procedure, I want antiseptic liquid and bandages available if things go bad on the way home. Hope like all hell I don't have to use any of it though.)
• Purchase extra data plan for the phone (so we can access email, web, maps, on the go. This makes me feel quite a lot more "able" when having to navigate a strange city on my own. And I will be pretty much on my own afterwards since the pain meds make hubby loo-oo-oopy!)
• Printed maps (mark the following places: motel - we go up the night before the procedure, fertility clinic, a park or lake where you can park up to rest or eat lunch or just think and regroup, a cafe (for before the op), a restaurant (for dinner the night prior), a good bakery or place to buy lunch (for after procedure when hubby will be in no fit state to eat in a cafe amongst the general public), a service station, a supermarket, a pharmacy, plus any other sites that you may need to access in a hurry. I am not the best navigator on my own, so having the backup of pre-planned and mapped destinations will make me a much calmer driver)
• RE appointment letter (because I always like to have a physical record of my appointment in my hand. You would be surprised how easy it is to forget exactly what time you are supposed to be at your procedure! Have the letter to hand lets you check and get it right.)
• Entertainment (there will be waiting. Like, fertility clinics seem to specialise in making you wait. Plus as well as things to do in the waiting room itself, you want something to keep your brain from going crazy when you're stuck in the motel room, or waiting for hubby to reappear from the operating room. A book, a magazine, or if you're like me, you are totally addicted to solitaire on your iPhone...)
• Clothes and toiletries as per normal for a night away.
• Phone charger
• Money / credit card for unexpected purchases while on the road. One time we had to buy ear plugs because the car windscreen came partially unstuck and made this horrendous trumpeting/howling noise. It was safe and we got it checked by a mechanic as soon as it occurred  but that sort of purchase is strange and unexpected and you need a couple of dollars handy for the unexpected.

* Note about valium, tramadol etc... Hubby is going along to see the GP tomorrow to discuss which of his current meds are ok with the anaesthesia he will be having, and to ask for prescriptions for pain relief and calm-down stuff. Much better to have it before the op and not need it, than to be prancing around a strange out of town pharmacy with a man-in-pain in tow.

Fourth, if you're not sure about anything, call for help. Have those numbers handy! Go back to your RE's office. Here in NZ they can prescribe other things too... we had left hubby's blood pressure meds at home, so the nurse was able to call our GP and get a one tab prescription organised and signed off by the RE. Yes it was a hassle, but at least hubby was cared for properly.

In what might turn out to be good news, our RE (you remember, the one who couldn't manage to find any spermies) is not going to be doing this op. To give you an idea of the level of communication we've had from this clinic, we do not actually know who will be performing the op, but my gut tells my it's simply got to be better than our current RE. Maybe she got spooked after I asked her to send all our case notes to our GP? hehe


So wish us luck and keep everything crossed that they find what they're looking for on Friday.

Now, some diabetes stuff. Pharmac in their wiseness decided to reduce the number of different blood sugar meters available in NZ down to just 3. That's right folks, you can only choose from 3 different meters, but if you consider that they are all made by the same company, and two of them take exactly the same test strip, then it just looks even grimmer.

I was not happy to change meters. My meter is fine, and it would cost me money and time to change. I think it sucks massively that the NZ government is failing to really listen to what Type 1 Diabetics need. Don't treat T1Ds like Type 2s!!!

Anyway, Pharmac let everyone know that you had a set number of months to change over. Fine. I still had a bit if time. Last month I went to get my repeat of old test strips and the pharmacist says, sorry, no, can't give them to you. Even though you have already paid for 3 repeats and only been dispensed 1 repeat. Even though you are a T1D and need this stuff to live. Even though you have a valid prescription. Even though the changeover hasn't happened yet. You will need to get a new meter. Pronto.

Gah! Turned out that the pharmacy had been running it's stocks low to the point of running out early and couldn't even order any more test strips in for me. They just weren't available anymore.

I wish I wish I wish that healthcare professionals would recognise what a living hell this can plunge a T1D into. The stress and panic. Plus I very easily slip into panic mode and I get really mad that there was nothing I could do to prevent this from happening. It is the only time when I resent diabetes - and event then I don't really resent diabetes as it's a part of me and without it I wouldn't be the same. But I seriously resent other faceless organisations and people getting in my business about my diabetes. You don't know what it's like. One flick of the beuracratic wrist on a keyboard and my life is all unsettled for more than a month. I mean, it's not like some other medicines where if you don't have it for a day or two you'll be fine. This is the sort of thing where if you don't have it, it's a complete f*cking disaster.

So instead of working at my job, I spent the afternoon driving between doctors office to get prescriptions, a new meter (piece of crap that I don't trust, it's not accurate enough!), back to the pharmacy. And to make it even worse, the nurse at the docs office screwed up the script and gave me less than a third of what I need. She didn't even read my prescription history, just wrote me a "Type 2" script. She caused me to waste money on an incorrect script (I didn't spot it, the pharmacist who knows me did thankfully). Then because meds are dispensed in thirds (repeats) I had to go back each week for three weeks to get... another 2 measly boxes of strips. Sigh.

Today I went to the docs to get a new script written. I checked it while standing at the counter, and it was wrong again. Still not enough strips listed. "This now says ten times a day - but I test 14 - 16 times a day. Can I get more?" I ask. Nurse responds: "No. You'll see I wrote ten a day, but they will only ever give you 2 boxes at a time." "Really??" Her: "Yup."

Well, I thought that can't make sense. If the script says I need 10 a day (it's wrong, but it's more right than it was at 4 a day) then why does mitte: 2 packs override it? How the hell is the doc supposed to set dosage of anything? I asked my pharmacist whose a good guy to help me out. He called the nurse and turns out she was working under the assumption that there was a limit of 2 packs per repeat for diabetics. There's not. Insulin dependent diabetics in NZ get access to as many strips as they need according to the pharmac website (one small blessing). So he got the script changed and faxed over, and gave me a bunch more strips.

(Note: I hadn't run out of strips completely. No, you can tell that I am not like that. I have a certain "level" of supplies I like to keep at home. So I normally have close to 10 boxes in my cupboard. That should keep me going for several weeks. And when this changeover happened I very quickly ran my stash of strips down. I only have 3 boxes left now. And this means I am cutting things close, considering it is HARD to get a reasonable amount of strips out of my nurse at the GPs. I will keep working on her. In the meantime I am trying to build up a decent stash of new strips before making the actual switch to my new meter.)

I know it's ridiculous to complain about strips when so many people around the world can't get what they need due to insurance restrictions etc, but here there are no restrictions. And that's my point. It was just sheer incompetence that was the problem, mixed with a lack of trust on the nurse's part. And she's the one whose been to all these extra diabetes training workshops.... doesn't know jack about T1D that's for sure. This meter changeover has cost me upwards of 16 boxes of strips that I will never see since the scripts for old strips can't be filled, and the first new script has been superceded. Gah, what a waste.

Solution: if T1Ds are allowed to have as many test strips as they want (and lets face it, you can't really "overdose" on them, it's a medical consumable tool, not medicine per se) why not put your money where your mouth is, eh Pharmac? Why not let any T1D just rock up to their pharmacy and say, "I test 16 times a day" and have the pharmacist calculate the number of boxes to dispense, then give it all at once. None of this splitting it up into thirds shit. I know you do that because a lot of patients never collect their repeats so it saves wastage. But, hey, diabetes is not really like that. This stuff is going to be used. So why do I need a prescription each and every time? Why not just get one prescription to kick things off, then let the pharmacist and diabetic work it out between themselves... that would be, oh, wait! Convenient to the patient! Nooooo we can't have that now. Better make it so complex and time consuming that it will drive folks mad with rage.

In other news, the cat went to the vet today. He's done something random to his eye, such as running into a rosebush or similar. Has small white spots on his eye just exactly like small puncture wounds The vets words were "thanks for coming in with something interesting to show me!" lol poor kitty. He will be fine, I must go put ointment in his eye now...

In other other news, we got 3 new chicks in spring and now that it's autumn, one of them is the most glorious and beautiful rooster... sigh. At least I have two places lined up to take him should the neighbours start complaining. I think he's lovely. Illegal, but lovely.

That is all. I'm sure you'll hear more from me at the end of this week. Wish us luck!