Monday, 30 May 2011

pre-doctor's appointment... excitement?

I have my appointment with my diabetes doctor tomorrow. I’d call her my endo, but she’s not, she’s a GP with special interest in Diabetes. I guess I should find an endocrinologist at some stage, but they’re in a little short supply in my city. And really, for now, the GP with special interest (lets call her Dr S) works- I like her, she’s got a load of experience, a good rep, and a really well equipped practice. Anyway, I digress.

I’m always nervous before doctor appointments (ok, not for my normal colds-and-fu GP, just all other doctors). Especially with diabetes, I’m nervous about what the doc has to say, if I get good news or bad, if I get a telling off for doing a bad job, or encouragement for trying. And then, there are the blood tests. It’s not the test that scares me (needles aren’t really a thing when you’re sticking one into yourself up to 12 times a day). It’s the results that make me nervous. The waiting for them, and finally getting them forwarded from the doctor.

I haven’t had my HbA1c checked since I last saw Dr S. That was august last year. Yes, I know that that’s way too long ago to have had my check up. The thing is, besides being lazy and broke, when I’m struggling to see any difference in my BG control, I struggle to motivate myself to spend time and money on an appointment where I’ll probably be told the same things, get the same blood test results, and feel even more useless about my diabetes management. Hence, I put off making this appointment until two months ago.

But this time, it feels like it could be different. Even though I’m not sure if there has been much change in my BGs since last year, I have to remind myself that stuff has been falling into place more for me; I have been putting at least a little bit more work into this disease. It still feels like my sugars are all over the place, but maybe, just maybe, I’ll see the effect of my efforts in my HbA1c. Hey, even a little drop would be encouraging.

The bigger thing about this appointment for me is that, for once, I’m actually excited about it. I’m still fostering my recently-acquired raging will to take this stupid diabetes on. The past month, especially, has seen me gathering information about what’s out there in diabetes developments land, and what is actually going on with my own diabetes. I may not have a pattern worked out yet, but I have the data. And a whole lot of questions about it- what can be changed, how to tackle different trends that crop up every so often, and what the heck to do when what should normally work doesn’t seem to work at all.
PLUS, I’m super excited to chat to Dr S about me getting an insulin pump and CGMS. She’s been asking for years if she can put me on a pump yet. For mostly financial reasons (my family doesn’t have much spare cash for such expensive equipment, and there was no chance this side of eternity that my (now old) medical aid was going to cover it), plus a fair amount of hard-headed stupidity for my part, a pump was never really a possibility. That’s changed- my new medical aid was selected specifically because they have a history of paying for these things. This might actually happen, and I’m so super stoked. It’s probably going to take a few months to make this a reality, but at least tomorrow I get to pull Dr S on board with this plan, and hopefully get the ball rolling so this can happen as soon as possible.
Excitement J

Sunday, 29 May 2011

Something Snapped

Since finally starting this blog last week, I’ve been itching for a chance to get writing. I have a huge urge to just blurt out everything in my head before I lose the thoughts, or get cold feet. But the days have been long and full this week, keeping me in the lab, or in meetings, and just generally busy with work stuff (and today, some weekend stuff), and hence away from this blog. Technically, I should be working on image-processing right now… nah, it can wait a while…

Last week I mentioned that I have stories that need telling. The tricky part for me is to work out where to start, and how to tell them, and how to say what needs to be said, without telling you my whole life story (or at least not all in one go).  I know that this this post needs to be about where I stand with diabetes now. I guess part of this is some sort of continuation of “introducing myself”. Knowing where I am and where I’ve been gives readers a context within which to read future writings.  But this post is also largely me wanting to mark where I am now, to place some stones beside this diabetes path to show the point where stuff changed. I want to document it, first for myself, and then to publish it, so that I cannot ignore it. And hopefully so that people will hold me accountable to it, and help me with it.

[I’ve written and rewritten this piece at least three times trying to work out what I want to say, and how I want to say it. Its been tending towards a long rambling  “life-story” type piece, complete with awkward childhood, D-parent-child tension, stupid student days and self-pity. Exactly what I keep trying to avoid.
So here’s another attempt, I’ll try to keep this one short(er) and simpl(er).]

Diabetes has been a part of my life since I was three years old. That’s 21 years. I’ll spare you the childhood memories and anecdotes. Not that they’re not there; I have a bunch of thoughts and memories that have been dredged up from the muds of time. But I’ll keep them for other posts.

I’ve spent a large portion of these 21 years treating diabetes like an unwelcome and inconsiderate house-guest. Sure, I’d do the minimum for it- finger sticks and insulin shots, just to keep it going, because, well, that keeps me going.  But other than that diabetes has not been allowed any significant place in my life. Diabetes has been relegated to the back room, where I would appreciate it if it stayed, quiet and unobtrusive. The problem is it seldom stays there- it sneaks up on me with lows, and jumps out screaming highs, and invades quiet moments with threats of the future. My version of blood glucose “control” can sometimes look like a crazy ping-pong game, and all I want to do is keep the numbers bouncing around between the two slightly-broader-than-medically-suggested limits, so that I can get on with my life. Because I have refused to let diabetes get in the way of me doing what I want to do, eating what I want to eat, when I want it, going where I want to go, and basically just rampaging through life on whatever mission of mine I am on at that point in time. 

Try as I might- and there have been times when I really, really have tried- I just haven’t been able to find and keep the motivation and discipline to tame this guest of mine. Even though I’ve known its bad, known its stupid and foolish, known that it will inevitably catch up with me (sheez, I’ve studied biochemistry, I know how this story goes), I haven’t been able to get myself to do anything other than lock up the guilt and depression in the back and keep doing the bare minimum while I blunder blindly on, with this guest of mine tagging along.

Two months ago, something snapped. It was during another painful and frustrating phone call with my medical aid. During this call I finally realized just how badly I was being ripped-off by them. And I lost it. Not while I was on the phone, just in my head… Ok, and in real life, once I’d put the phone down. This stuff is a story for another post all on its own, but the point is that in the losing it, in the freaking out, in making the decision to look for a new medical aid- one that would actually pay for stuff, maybe even *gasp* pay for an insulin pump- something happened. When whatever it was that snapped, snapped, something else clicked into place. As I started looking around at all the different medical aid options, and treatment options, trying to match them up, and as I came across more and more material about diabetes, suddenly it felt like I finally “got” how this thing was meant to work. No, I didn’t miraculously work out how to perfectly stabilize my blood sugars. But it felt like for the first time, I actually understood how the mess of all the different aspects of this disease and its control are meant to fit together. Yes, I know I’d studied it before, and do technically “know” all the biology.  But suddenly I “got it”. I don’t know how else to put it, it just suddenly clicked in my brain. And with it, and because of it, because I finally “got it”, another thing clicked into place-- a sudden raging will and focus to get this darn disease under control.

These aren’t the first things that clicked. I think over the past year or so, some of the pieces have been slowly settling into place in my head. I’d been wanting to try tackle this diabetes, I just hadn’t known where to start. With a lot of support and encouragement, and the odd kick in the butt, from my rather awesome boyfriend, I started taking dance classes again in august last year, for the first time in 5 years. I also started running in between the classes. The exercise had a huge impact on my BGs- I suddenly had a whole lot of hypos to deal with! It was a good start. I took myself off to my diabetes doctor and had all the blood work done, for the first time in two years. I went back to the dietician and relearned carb counting.  All this has helped- carb counting makes bolusing for meals less like a shot in the dark (mind the pun). The exercise is another weapon against blood sugar, and one that I’ve seen become more effective the more I use it.  But I’ve still been struggling. I’ll be the first to admit that my efforts are still inconsistent, and sometimes it feels like nothing works anyway.

But since the medical aid freak-out, since what ever snapped, snapped and what ever clicked, clicked, I have a raging will, and a mild obsession, to get whatever I need, and do whatever I can, to make this work. Somehow, by waging war on my medical aid (yes, I do promise to post about this in more detail another time), my clicking-snapping mind made the leap and now I’m waging war on my diabetes too. I’ve changed medical aid. I’ve done my research. I desperately want an insulin pump and a CGMS (now to just get my doctor and medical aid to agree to it). I’m testing my blood sugar near-compulsively.  I’m even logging my numbers and shots and meals (ok, not every day, I’m still working on this one. But hey, it’s a start right?)! I’m trying to look at different parts of my control- different times of day, different meals, different activities, etc, as little science experiments (no, I haven’t read Ginger’s book, sorry. I do freely confess to getting the idea from the title of it though). Heck, I work in a lab. I do experiments all the time. If that’s what it takes to work this disease out, I can do experiments! (This also technically changes the horrible log-book into a lab book, filled with all sorts of scientific data and notes. And this appeals to my nerdy side and makes it more bearable :) )

This is war. No more creepy-house-guest diabetes.  As much as I wish it wasn’t so, I know diabetes holds rights to a permanent position in my life. And by waging this war, I’ve up-graded it to a more prominent and visible space, where it occupies more of my time and thoughts. But it can stay there only with my permission, as a controlled and subdued medical condition, not some lurking terror of the future that I’m constantly aware is trailing right behind me.

Whatever it takes. It's war.
This time, this is going to happen.

Monday, 23 May 2011

a minor rant

a rather full and busy weekend, including a fun run/walk, family birthday brunch, shopping, meals out, late nights, late night movies with popcorn et al, and some thesis proof-reading. and, in all that, relatively stable bg's- besides one nearly-low, and a random high of 13 (mmol) late last night. Cue today: maybe it was the unusually early start, maybe it was sleep yet-to-be-caught-up-on, the experiment planning, or the, um, way the wind wind was blowing? either way, three lows (two before lunch) and ensuing rebound highs, tell me that i've been riding the glucoaster. and i'd like to get off now please. unimpressed. i'm gonna blame it on monday and go get some sleep now.

Friday, 20 May 2011

A Start...

So, a little while ago, I was obsessively trawling the interwebs for useful diabetes and insulin pumping related information (not the dry and sterile stuff you find on the medical sites, but actual helpful information, such as other people’s opinions and experiences) to help me in some decisions I’ve been trying to make. And I came across a blog. By someone with diabetes. And he was blogging about diabetes, and his insulin pump. Awesome, more-or-less just what I was looking for. And he included a link to this other diabetes blog. Which had links to other blogs, which had links to other blogs, which had links… all about diabetes, and life, and life with diabetes!
At first my reaction was along the lines of “What the-??? These people are blogging about diabetes??? Why??? What on earth could people possibly have to say about diabetes? Why not, you know, just shove it on the back seat, tell it to keep quiet, and just get on with life?”  Cos, well, that’s what I’ve been trying to do for the last 20 odd years.  But it turned out to be really cool to read about other people’s experiences with diabetes, the fears, problems, survivals, how incredibly funny living with diabetes can actually be, and to be able to completely relate!
And then the reading may have turned into something approaching a mild obsession. I may have drowned my Google reader with D-blog subscriptions. I may have become a lurker (and been appreciative to discover that there was even such a term for me, lurking on all these D-blog sitesJ).  And I noticed that, just in reading these blogs, and seeing the support everyone offers each other, I’ve found loads of information and I’ve been encouraged, and hugely helped in the small steps I’ve been taking recently to actually, well, try take better care of my diabetes. And I’ve become more open and outspoken about it- answering people’s questions, and standing up to fight for (about? over? against?) it when necessary. And that has been really cool. And I think I want to be a part of something like that. I want to be a member of this community, online, and offline…

And so… here is this blog.
It’s a little bit daunting to me to be honest- I have a tendency to start stuff, with loads of enthusiasm, only to let it fizzle and die in a corner shortly afterwards. But, lets look at it as an experiment. And a tool. An experiment- to see if I can actually write anything worth reading, that people may actually want to read, with anything approaching regularity.  A tool- for me to be able to connect with other people with diabetes (I don’t actually know any other PWDs, I’m hungry for communication) and to add my voice to the others out there, telling their stories and sharing their lives (and I do have some specific stories that need telling; like the war I’m currently waging against my soon-to-be-previous medical aid, and my hopefully-imminent-and-exciting transition from MDI to a pump). And, because, despite my trawlings through D-blog land, I have come across very, very few  D-blogs from South Africa (two not-very-active-ones, to be precise). No, this is not Caron’s South African D-blog to the rescue! But maybe I can start something on this side, or at least be a hit that crops up when other PWDs in this part of the world google for the relevant support they’re looking for.  And finally, this blog is an experiment AND a tool because, to be honest, I need the accountability. I’m working hard at getting my diabetic-act together. But, given my previously mentioned tendency to start with a bang and fade rather quickly, I’m scared this fades too. Hopefully by putting myself out there, and making a thing out of my diabetes care, I’ll be more motivated to sustain it. So, for all my ramblings, this isn’t just me saying I want in on the D-blog party. I need this blog.

Um, other than that, I’m not too sure what I’m going for with this. I’ll make it up as I go along. Life on a learning curve, right? And sure, as much as I need to write about diabetes, that’s not all (by along shot) that goes on in my life, or in my head. So no doubt topics will vary occasionally. I may even post photos.

For now, please please comment! Say hi, or something- let me know you were here! Despite my long ramble (sorry), I’m a little shy, and perhaps a little socially inept. This is me putting myself out there, instead of just lurking. But besides this I have no clue how to start conversations. Can I leave that up to you?
… oO

A Preamble...

The time between me deciding to start a blog, and starting this blog was significantly lengthened by me being unable to decide on a name for it. (I wasn’t actually even planning to start this blog this evening, but it’s not like I was being productive at getting anything else done, so I’m just gonna do it, and then hopefully I can stop obsessing and get back to work. That or I’ll compulsively post writings on it. One of the two). So I’m going with life on a learning curve, the one I thought of 2 weeks ago, and keep coming back to. At least for now. 
I guess any life has an in-built learning curve. But heck, I’m a 23 year old, post-graduate student doing biological research, trying to work out how real life is meant to work, and how to get diabetes to settle down and fit into this picture- so, most days, this feels like a pretty steep curve to me. I think I’m ok with that. I like learning. I want to keep learning (I’ll keep telling myself this).
[um, no special meaning for the background of this blog. It’s a pretty picture. I like birds. I like the colours; black and grey. I also like red, but have yet to work out how to fit it in on this layout...]