Packed Up & Ready to Go With D

As I write this I am halfway through a cannula set change that I am well overdue for. It has been 5 days since my last set change. 5 days of sun, sand and snorkelling, on the Great Barrier Reef. 

At 3am on Sunday morning, I was rifling madly through my daypack which I had stocked full of D-related items. Something I have never had to do before. My 1st holiday with D. So I quadruple checked that I had enough cannulas and reservoirs. That I took a back-up script in case all of my insulin mysteriously diseappaered or went off. Photocopied my Drs. note explaining why I was taking a million back-up needles and why my pump couldn't go through X-ray. A WHOLE BAG devoted to D.

At 6am on Sunday monring I was at Brisbane domestic airport, all prepared to have to explain why I was taking drug-related paraphenalia onboard with me. The securty station basically yawned at my explanation and waved me on. Relief. And oddly dissappointed, because I'd spent so long packing it all the right way and photocopying my million and one Drs certificates that I wanted someone to pay attention.

At 5pm on Sunday I had been in Cairns for several hours and was doing my 1st set change away from home. And thinking how bloody hot it was. In Brisbane I still have my doona on at night. In Cairns I slept naked with the aircon on and still felt heat-stroked. In cairns I also did my 1st set change ahead of schedule becasue I sweated so much in the first day all the sticky stuff came off and the cannula basically fell out. For the rest of our time in Cairns I double-taped my cannula down and left it that way. And promptly forgot to change it again for the rest of the trip.

On Monday I anxiously boarded the Quicksilver Wavepiercer for the trip out to Agincourt reef. Hoping against hope my BGLs would behave themselves and let me enjoy my day. And with a little persuasion from 5 bread rolls with no bolus, they did. D let me happily snorkel about in the reef for a good few hours of underwater beauty. The lifegaurd however didn't seem to have as much faith in the abilities of eating multitudes of carbs to keep my BGLs up and made me wear a specially marked snorkel piece that identified me as a 'risk swimmer'. Every so often I would pop my head out of the water to hear them asking each other "Where's Ashleigh?" whilst looking out for my specially marked snorkel. 

Amazingly my cannula site held up well in the salt water. I guess I did use half a roll of tape and borrowed a Lycra suit to keep it as dry as possible.

Later on when I knew I had been without insulin for about 2 - 2 1/2 hours I left snorkelling to go sight see from the top deck of the pontoon. An American couple stood next to Hugh and I. I was using my pump as a towel-holding clip (works really well). The American lady pointed excitedly at my pump, and with a big grin, twisted her side towards me, exclaiming: "I have one too!". Sure enough, there it was. It was so amazing to be able to talk openly with another D1. 

Tuesday was another test of my D, as we went to Kuranda by scenic rail (ok, that wasn't a test, but the journey was pretty) and then horse riding. I stayed disconnected from my pump for another 2 hours that day. My BGLs stayed at a happy 6 throughut the ride. Halfway through I took precautions and guzzled half a juice. Still ended up on a 6.something. :).

Later on that night we went for a walk after dinner down the Esplanade Boardwalk. Thinking it was a casual stroll, I only took minimal D supplies. At this stage I was sick of carting all my D equipment around. On the walk we found a massive children's playground. It was so fun! Right up until my 1st holiday hypo anyway. Then I realised I had no hypo treatment on me, and we weren't anywhere near any sort of sugar. At this point, our casual stroll became a panicked run back as fast as we could to the nearest shop (a bottle-o) where the guy was closing his tills. After explaining that it was super important he let us buy something sugary I left with a litre bottle of OJ. I drank half :S Lesson learnt.

Yesterday we went out to Green Island. In the instructional welcome video it was advised that if the boat were to sink we should: "Pull down firmly on the neck of the lifejacket as you jumpinto the water. After doing so, swim GRACEFULY away from the boat." Yep, they instructed us to swim gracefully. I'm sorry, but if  the boat was sinking, swimming gacefully would notbe high on my list of priorities. I would be thrashing about like a fish in a Pelican's beak.

My BGLs behaved much the same as at the outer barrier reef, but on much less food because whatever it was that I bought on Green Island (a hot dog suppossedly) turned out t be not all that edible. Green Island was a bit of a let-down really, as I was panicking about D most of the time because all the nice reef is very far out from the island, and quite a swim. I knew I wouldn't manage such a long swim back to shore if I had a hypo. The risks we with D take just to do simple things like swim. 

Today we returned. I had my 2nd hypo after attempting the boardwalk again. We did get further this time. I have also discovered that if you mix both a hypo and heat-stroke, you go into some sort of mega-badly-feeling hypo that incapacitated me for quite some time. Fun stuff. Great way to end the holiday. And start my birthday. Which finished slightly better, as after the plane arrived we went to see 'The Watch', where I made the discoevery that I had run out of insulin in my reservoir whilst hoeing into a family sized bag of M & Ms. Hence the canula set change now, as it had been again a good few hours between insulin. I did have my back-up needles and insulin on me at at the cinema. I chose not to use them. Hello high BGLs! Welcome back to Brisbane.

9.7%

A week after I was first diagnosed I did my 'baseline' HbA1c test, organised by my endo. Basically the HbA1c that you 'start' diabetes with. Designed for you to compare yourself to and then try to beat it and get better control. My endo let me know my result the day after. It was 9.7%.

2 days after I did this blood test, I get 3 missed calls from my GP surgery. They left a voice mail message, asking me to make an urgent appointment. Having just been diagnosed with T1 a little over a week ago, I was freaking out, thinking "What have they discovered this time?". So I rang back and made an appointment for the next day. All they would tell me over the phone was "The Dr. has flagged your blood results as requiring attention". Thanks guys, way to ease my worried heart.

So the next day I go into my GPs office, having a mini-heart attack over the possibilities of what could be wrong now. I vaguely remember some blood tests being done for other autoimmune disorders such as MS at the same time as they took my baseline HbA1C. So its safe to assume I was sufficiently freaked out.

I made myself comfortable (or as close to comfortable as I can get; in a seated position that would still allow me to spring up from seat at any moment should something truly horrible be said and I had urges to run away). Hands shaking. My Dr. had a serious face. He never has a serious face, I am more than convinced that he uses some sort of illegal prescription for happy-giving effects. Even when he told me I had diabetes he was walking joyfully around the room, and at one point stopped to weigh himself (he made a comment about how pleased with his own weight he was). Anyway, at this point he looks at my blood results, sighs, turns to face me and says: "These blood results are very concerning. You have very terribly controlled diabetes, your HbA1c is 9.7%!".

And that was all he had to say. I kind of gave him this 'Are you kidding me' look and replied "You diagnosed me last week. That was my baseline HbA1c."

He looked confused and opened up his previous consult notes to check on this. I walked out laughing and more than incredibly relieved.

Bizarrely, he now knows who I am and my medical history off by heart. Everytime he sees the Dr. I work for at GP talks that she gives he asks how I am. He was super excited when I went in last week to have a check up and he realised I had Lewis (my insulin pump). He was extremely fascinated and wouldn't give Lewis back for a full 10 minutes, until I reminded him I needed Lewis to live.

He also hasn't asked me what my newest HbA1c is.

Now That You're Here

Dear Scarlett,

I know we are not destined to be together for a long time. I must apologise for this, and for using you shamelessly whilst I wait for someone better than you. In the short time that I have known you, you have given me so much more hope and joy than you can possibly imagine. You save my life on a daily basis and words cannot express the gratitude I feel for you for taking on such a burden. 

You have gone above and beyond in making my life so much more bearable. I would be lost without you. I know I couldn't go back to life before I met you. You are there for me through all my hypos, calmly reminding me that I am not allowed to bolus until my BGL in is a better range. Reminding me to test after eating. Doing all the hard maths calculations that you know make my brain hurt. Letting me live just that little bit more freely.

You take away my pain. Promise me just 1 quick injection every few days instead of 5 or more per day. You get it over with as quick as possible, because you know I can't stand to hold a needle in myself for the full time it takes for an injection. And you do it without letting me know. I take a breath in, breathe out and it's over. I'm so surprised it has happened I don't have time to feel any pain.

I want to thank you Scarlett, for being there for me when I needed you most. I have not cried since I met you. I have been happy. Really, truly happy. I feel you have afforded me life again. You allow me to be spontaneous. I was so ecstatic when you let me go to Zumba the other day, without having to think about it first. You just me let me go! 

Scarlett, you will always be the first. I will never forget you, and I know we have many more happy days together before I have to let you go, and take another.

Always,

-Ash

'Twas the Night Before Pump Start

"Twas the night before Pump Start, when all through the house
Ashleigh was stirring, excited and rouse.
The cannulas were boxed by the front door with care,
In hopes that an insulin pump soon would be there."

Excited and rouse doesn't even begin to cover how overtly stoked I am. I have spent the better part of the week taking out my box of  pump start equipment, excitedly looking it over, handling cannulae sets, and redoing the Medtronic pump school lessons over and over again. When I tire of that I run around the house singing random songs and rhymes, but changing the lyrics so that every word in the song is now 'pump'. 

Every so often I remind myself to stop, take a breath and remember that it can't perform miracles. Although I am hoping for one in the afternoon hypo department. I have found that my car just isn't that entertaining to sit inside for (on average) 1 1/2 hours every few days whilst I wait for my blood sugar to start being driver-friendly. Consequently you will now find that a gameboy advance permanently resides in my glove box. There are also (on last count) 27 assorted flavoured juice poppas.

So tomorrow I guess I will see just how it fares in the 'miracle' department. Short of curing diabetes, anything that makes my life just that little bit easier in the D department is a slyly disguised miracle. Even if I do still have to test (and more regularly on a pump apparently) several times a day, I am so happy to get rid of MDI's (multiple daily injections) and all the pain, pin holes and bruises they accrue. I'm also happy that I don't have to rely on my memory so much. I have lost track of the amount of times I have forgotten my daytime Levemir. Makes for some bad BGLs.

This time tomorrow, I will be blogging with Scarlett by my side. The only challenge now is to attempt to sleep tonight. 

The Final Countdown

7 Days to go and I will be holding Scarlett in my hot little hands (or stomach). I am so excited! So much has happened to me between making my pump date and now that I haven't really had time to contemplate how this might change my life. Well not that much, but a fair bit.

I got my licence. Go me! This was the 1st thing I have really had to conquer with D. And it was confusing. Especially when I had to explain to my driver instructor why it can be potentially dangerous to let someone with D drive. He didn't understand at all why I needed to show him my medical certificate or why I had to check my BGLs before driving. Which was frustrating, but was a good practice run because my testing officer didn't understand either. So I'm pretty sure I was marked up a few points for BGL testing without being told and being 'safe'.  Now I'm attempting the challenge of wiping out my usual afternoon hypo (which occurs every 2nd, if not every day at approximately 3 to 4pm) so that I can drive home safely every day after work. Which didn't happen for me at all on Wednesday. I ended up having to leave my car at work and call my partner for a lift becasue an hour after initial hypo onset I was still hypoing....so 1 1/2 hours later I was still sitting in the parking lot at work. Reason 1 why I am so damn excited for the pump. Hopefully I can reduce my insulin at this time so it won't happen very often.

Got a cold (not the flu, I got my free jab for that at the start of winter...The only thing D gets you for free). Successfully kept my BGLS between 6 - 10 with minimal extra insulin. Consequently I only felt like crap because of cold symptoms. Supposedly the pump will also help with illness.

Finished compiling my box of 'pump equipment'. Which I open at least once a day and stare longingly at. My partner thinks I am obsessed. I think he is correct. This is also something that the pump should help me with. After a week or so when the excitement has worn off and I am no longer pining after the illusion of the pump.

7 DAYS TO GO!

A Date With Lewis

It has been made. A date with Lewis. Today after my meeting with my DE we decided on a pump start date for Lewis. Or, what will be Lewis eventually, once my PHI kicks in (8th of May 2013). I am starting on a Medtronic loan pump in the meantime. I think I will call my interum pump 'Scarlett' because Scarlett sounds like she gets about a bit. Not that I mind at all. She's doing me for free after all.

The drawback to a loan pump is all the extra paperwork. This is where I am really glad I work where I work. Managing to dodge a few (expensive) bullets because reps like to keep  the Drs happy :)

So my countdown has started. 11th of August 2012, the day I become a Cyborg.  Almost. Sort of. Maybe not really at all but who cares? I for one am excited. I can't wait to have my pancreas dangling on the inside of my pocket or hanging in my bra. Really, who else gets to play around with one of their vital organs on a regular basis?

I am super excited. I am also sure that partner is also super excited. Mostly because I'll stop walking around the house chanting 'Pump, pump, pump' 'puuuuuuuump'. As well as being super excited I am also super impatient. And now I have a date it is taking foreeeever to get there. What makes it even longer is that I received my pump supplies. Upon receiving them I ripped the packaging open. Faster than I can rip the wrapper off an aero bar (which is really damn fast).  Then I had to give myself a stern lecture on how I was not allowed to put a cannula  in yet, and how I had to wait. Somehow getting a box of cannula's was better than Christmas.

I can just imagine what I'll be like when I actually get Scarlett.

Sick Days

Today I am spending the day lazing about in my PJ's, watching Disney movies. Feeling sick. I haven't had an illness in close to a year now, so I'm not finding it the easiest to cope with. Add to that my diabetes. Apparantely being sick makes my BGLs hate me. Waking up on a 11.2 is so much fun.

I vaguely remember covering sick days with a DE or 2. So I know I have to take more insulin. But how much more, I don't know.  It's confusing stuff that makes me want to lie down and cry with frustration. I have decided on 50% more long acting insulin and a ratio of 1.5 units to 10gm of carbs. It seems to be working well enough. No hypos, BGLs stay on about 10. I need to pee every 30 minutes but I don't know if thats related to being on 10 (really, its not that high when you think about it) or because I'm sick. Whatever. Add to that massive toothache from my last Wisdom tooth coming through. (Note to self:  look into this supposed new dental scheme for diabetics that I keep hearing about. Which may or may not be completely fictional. Depending on if the original rumour spreader was Hi, in a hypo or both at the time of rumour starting.)

I don't mind being sick so much seeing as its the weekend. But I DO mind that it destroyed my perfect BGLs. I had had BGLs (After I FINALLY finished honeymooning and had a chance to figure out my ratios) ranging between 4. 8 - 6.3. For 4 straight days. It felt amazing. Seriously. 4.8 - 6.3. And I'm talking before and AFTER meals. Yup. And now I am sick. Sad face  for the ruination of my perfect BGLs. At least I know it can be done.

So here's hoping that come tomorrow my BGLs like me again, and I no longer feel like Link whacked me multiple times with the Megaton Hammer. (Seriously, being sick never felt this bad before diabetes. I swear).

Age Matters

Since my diagnosis I have often wondered how my life would have been different if I had been diagnosed earlier. I don't think there is ever a good time to be diagnosed with Type 1 Diabetes, and in no way do I think that a child diagnosed would have ever had it easier. I just wonder how different it would have been because the only side I know is the adult side.

I'm sure there are up points and down points to both sides of the age coin when it comes to diagnoses of D. I was lucky I was diagnosed when working for an endo so I already had a good understanding. At the same time, I wish I wasn't. The pressure was on almost immediately to get my BGLs under control; perhaps that's why after my baseline HbA1c of 9.8%, my HbA1c 1 month after diagnosis was at 7.3%. And I am expected to keep improving, becasue I work with a wealth of knowledge about my disease.

That much pressure is probably why I am already facing my 1st diabetes burn-out, and am refusing to do needles now, even when I need them. I was chastised last week by 1 of the DEs becasue I just don't give a crap how many carbs are in an apple. If in doubt, assume 30. I DON'T CARE!! Burn-out is why I have broken so many needles by flinging them across the room in fits of hot temper at how much I HATE needles. Its why I no longer record my BGLs, let alone check regularly.

I know juveniles who are diagnosed will go through burn-outs just as I am. But I wish I had the support that their parents can give.  As a kid, my parents would have had to have been there. My dad didn't answer his phone when I tried to call him to let him know. He came to visit 2 weeks after diagnosis and commented that I 'appeared to be doing well'. No, I am not doing well. They didn't know because they weren't there. I wish they were there with me to see how it really affects me. My mum, I love her, but there is only so much you can do and know about the disease from 1000km away.

I guess I am looking for that stability and support that I would have probably received if I had been diagnosed as a juvenile. The access to support groups via camps and other such networks. An easier start to the pump, rather than deliberately sabotaging my HbA1c to qualify for the pump consumables scheme, simply because I was diagnosed over the age of 18. I'm not sure how they figured this out, but NDSS should realise that just because I was diagnosed as an adult, doesn't mean I can handle it. I can't.

At the same time, I am so thankful I was able to run and play as a child without the fear of hypos. That I could shovel lollies into my mouth without BGL repurcussions (Unfortunately as child, I didn't actually like lollies. If only I had known). That having an adults understanding right from the get-go means I have a small headstart in getting my BGLs under control to hopefully prevent the cocktail of related medical conditions that come along with this disease.

Mostly, because I don't know how well my parents would have coped if I had been diagnosed as a child. I think this was the first opportune time my body had to do this to me when there weren't other complicationg factors. Like uni. Like being the eldest child in a single-parent household. My mum had enough on her plate without having a diabetic child. And my dad has his depression. To the extent where, on weekends, we would visit and he would sleep all day. So our one and only meal usually came at close to 9pm when he would wake up. I don't think I would have survived that with diabetes. I don't think my parents would have survived my diabetes.

So an adult, I have to be.

Honeymoon's aren't just for lovers

After weeks of multiple hypos I finally went back to my Zumba class last Saturday. My instructor rubbed my arm to make sure I was real. Which was quite awkward, but that's how she rolls, and I'm OK with that, considering one day she will probably be squeezing my finger trying to make me bleed onto a small strip.

Eventually I was asked where I had been. And my answer was 'Honeymooning'. Which I always forget non-Type-1-diabetic's don't understand because everyone immediately looked at my ring finger (still bare). So then we went into the honeymoon explanation, whereby my pancreas has decided that it doesn't like to be outshone by anything else and makes a half-arsed attempt to get all jesus-like and raise itself from the dead. Or maybe like a Zombie. Yeah a Zombie. I have a Zombie Pancreas. Its like a little alive, but not really.

Anyway, we discussed how the honeymoon period sucks and screws everything up, etc etc. Which is quite rude of it really, because so far I have only been told how wonderful the honeymoon period is. In fact my Endo was super excited about it and said she 'hoped it would stay for another 6 months or so'. I wanted to punch her. Mainly because:

1. - She banned me from exercise that day. Although I can go again now I really really wanted to go that 1 specific day. I totally felt like exercise. But you know, 5 hypos on no insulin except your long-acting is kinda crap. I guess she didn't want me dieing or whatever.

2. - It put my plans for Lewis on hold. And I really, really want Lewis. So bad right now.

3. - Yes, needles suck and I hate them. They hurt every damn time (which, by the way, the medical world will lie to you about and tell you that so long as you do them correctly you won't feel a thing. Don't believe them. You can't convince someone to hurt themselves intentionally at least 5 times a day by telling them how much it hurts). Honeymooning makes needle time even harder because you're doing it for 1 unit. ONE FRICKEN UNIT. Feels like such a waste to go through all that pain just for one unit.

4. - Hypos. Like BHAM. Everywhere I look.

5. - I just want to know my carb to insulin ratios. Currently I do not know my ratios because they change at every butterfly fart.

So here's hoping my pancreas doesn't get its fix of brains and continues on its merry way to an early grave. Its getting between me and Lewis.

A Day In the Life of Me, With D

7.30am – This is a sleep in for me. I wake up and I know I have to do a BGL check and I know that it is a full hour after my usual breakfast time. But I don’t want to get up yet because its cold outside and I’m still sleepy. It’s the weekend and I should be able to sleep in. So I roll over and fall back to sleep, slightly worried about not doing a BGL check.

8.30am – I get up and do my morning BGL check. 5.4. Not bad. I congratulate myself on my 1^st morning BGL below 6 in a week. I eat breakfast (sugary sugary Kellogg’s Crunchy Nut) and skip my insulin because I’m about to go to a Zumba class. I usually exercise at night, so I have never skipped insulin before and I’m not too sure how this will work. Oh well, here’s hoping it goes ok.

9.30am– Arrive at Zumba and do a pre-exercise BGL check. 11.1. An hour after breakfast so that’s not too bad. I do the usual run through with my instructor as to where my jellybeans are kept and how to use my pricker in the event of my not being able to test my own BGLs. Exercise is a scary thing, because so many of my hypo symptoms replicate normal things that happen to your body during exercise and/or do not occur during exercise. For example, sweating, which is usually my biggest symptom, and shaking both happen to me during exercise. My other biggest symptom, being cranky about nothing, doesn’t happen because exercise makes me happy.

Halfway through I do another check to see how I am fairing. 7.8. Apparently I look disoriented at this point and the instructor, Sonja, asks if I’m feeling o.k. and I need any jellybeans. I tell her I’m fine and a look of relief spreads over her face. I’m sure the last thing she wants is to have to figure out how to help a diabetic in a hypo. I’m pretty sure everyone in my class is slightly afraid I’m going to just randomly become comatose in the middle of a song, because everyone ALWAYS makes sure I’m feeling o.k. Every 10 minutes. If it’s all the same to everyone else, I’d just like to get on with my workout.

10.30 – end of workout. Check my BGLs. 5.4. I know by now that this means as soon as I’ve had 10 minutes to rest I will plummet. So I eat a few jellybeans in preparation. Once I’m home I have the world’s biggest glass of orange juice. I want to clean my house but I know that will definitely make me hypo, so I leave it for another day.

12.00pm– Lunchtime. BGL check is 4.8. I have a big-ass bowl of stir-fry and a glass of apple juice. In total this meal contains approx 60gm of carbs. Yes, I count carbs. Every time I want to eat I count carbs. Preparing my needle is now 2^nd nature whenever I think of putting food in my mouth. At the moment my stomach is quite bruised because I’ve been getting sloppy with my technique and I’ve stopped looking. The needle hurts and I consider needling somewhere else for a while but can’t bear to move it to another area. The idea disgusts me. I do 4 units of insulin, stupidly forgetting I just finished a workout. So I decide after lunch I will veg on the couch and hopefully I won’t get a hypo.

1.00pm– Scratched myself accidentally on the arm. Use the blood to do a BGL test. My fingers are amazingly sore from testing lately (must be winter). I’ve been trying to move my testing sites around but my body just doesn’t want to bleed. Damn non-bleeding body. BGL 3.3. No hypo symptoms yet. If I wait another 10 minutes it will go down into the 2’s. Generally I am unable to even tell you my name at this level, so I pop a few jellybeans and raid my cupboards looking for yummy hypo food. Eat lots of stuff. Eeeep.

3.10pm– BGL check 10.2. Over-corrected my hypo. Shrug it off and do housework to bring my BGLs down.

6.45pm– BGL 6.0 before dinner. Yay! Eat chicken thingies (Yes, that is what I have named them) with vegies, including corn and potato, which both contain carbs. Too lazy to figure out carb amounts and they are the only carbs I am eating so I skip insulin again as we’re about to head to the cinemas anyway and I will have to do insulin then anyway. I hate hate hate needles and pretty much refuse to do more than the 4 I’m supposed to do each day (1 for long-acting, 1 each for breakfast, lunch and dinner). I’m such an awesome diabetic.

8.20pm– Movie about to start. Check BGLs 8.3. Inject myself with 7 units of insulin for an unknown quantity of carbs (which pretty much means I can’t be bothered trying to count. Honestly, why did I get the disease that involved maths AND needles? Somebody really really really hates me. A lot.). Actually, I can figure out the chocolate but popcorn just doesn’t work for me. I have tried and tried again to figure this out. Always high after, no matter what ratio I do for it. (And yes, both popcorn and chocolate (1 bar = 30g = 3 units). I’m Type 1, not Type 2. And as previously stated, I’m an awesome diabetic). Watch Men in Black III and have a few hours break where I forget I’m a diabetic.

10.15pm– Last check of the day as we leave cinemas. 9.2. At least it’s not the 15 I had last time I ate popcorn.