Mission accomplished

I did a set change this morning. The stream or words that escaped my mouth as the needle shot into place, right by a nerve, went something like this:

Motherfructosewalnutnephronkinaseoesophaguseggmanmitosisketoacidosiswalrus!!

I was trying really hard not to swear. also, this may make more sense if you know that i had an amazing biology teacher in high school who would introduce new terms to us as suitable substitutions for swear words. I think she would have been proud of me.

Diabetes and --- (aka losing faith in my immune system)

This post is a little overdue (by 6 months), but whatever- my stories, my schedule. Or something... The thoughts and emotions remain valid..

So in one of my previous posts i mentioned that my last bunch of lab tests were... Interesting. Everytime i get blood drawn for an appointment with my doctor, she tests my HbA1C, my lipid profile, and my TSH (thyroid stimulating hormone) levels. Once a year or so she tests for a whole bunch of other stuff. But for my regular blood draws, those are the golden three. I had tests done towards the end of last year and lipids and TSH came back normal and my HbA1c was hugely improved (yay!). Fast forward a few months to my next bunch of pre-appointment tests at the end of april this year: my TSH levels came back high. Like, 10-times-what-they-should-be high. Like, good glory, how-are-you-not-falling-over-puffy-skinned-and-where-is-your-goitre?? kind of high... (and with it some less than ideal lipogram results, and an unchanged HbA1c- well yay for that at least?). Some more tests (which I had to pester my doctor for a bit more than i would have liked, surely confirmatory tests should be normal before you make a diagnosis? Otherwise it's just an assumption? A well educated guess?) confirmed that i did indeed have elevated antibodies against my thyroid, and lowered T3/T4 levels. 

Well hi, hashimoto's hypothyroid, nice to meet you...

I know that this is not, technically, a big deal. I know that hypothyroidism is relatively common among women in general, and that a lot of people with type 1 diabetes have hypothyroidism. And i know it's easily managed. A pill, once a day, every day for the rest of your life, and you're A-OK. Please, in comparison to testing blood sugar 8-10 times a day, multiple injections or pumping insulin, lowering highs, raising lows, watching what you eat and making sure to get regular exercise- and avoiding lows in the progress? In comparison, one pill a day and regular blood tests (which i do anyway) is nothing. Really. 

I am not overly upset or stressed about this. Exhausted, maybe, at the thought of having one more thing to deal with. Exhausted, just in general? I confess, there is something particularly disconcerting about realising that , despite all your efforts to control a pre-existing chronic condition (diabetes), your current lifestyle is so unhealthy, so high-paced and high-pressured and so sleep-deprived; that you assume it's perfectly reasonable and normal to feel as crap as you do, to be permanently exhausted, emotional, stressed out and on-edge, that you don't even recognise the way you feel to be symptoms of a disease state. Surely, surely, there's something wrong with that? And, perhaps, something wrong with the post-graduate research system, or the research community, and maybe even society, that we encourage and reward people who live like this? Maybe? (ok, perhaps that's a tirade for another post).

Aside from my exhaustion, there is a slight sense of mourning, a sense of loss that doesn't particularly make much sense. I'm already used to having one endocrine gland that doesn't work all that well, and resigned to living with it for the rest of my life. So the life-long aspect of hashimoto's is not a big deal for me. Maybe its more just the fact that i was so young when my pancreas died that its just always been my "normal" for me. This is the first time i have to consciously realise and accept that a part of my body that was working just fine not too long ago is now defunct. Dead. No more. And with it, my body has lost one more tool available to it to fine tune and regulate my metabolism and maintain homeostasis. And so, even though i can just take eltroxin and carry on and this doesn't really affect much else, on the other hand, in a myriad of small ways, this affects everything. And that makes me a little sad.

Perhaps the bigger over-riding reaction to this, that has simmered down since april but remains always lurking in the background, is a loss of faith in my immune system. No, make that the gain of a deep sense of suspicion of my immune system. For this, perhaps a bit of background information may be useful. 

I am the only person in my family with diabetes. Among all the aunts and uncles and cousins and grandparents, parents and siblings (ok, i only have one sibling, but that's besides the point), i'm the only one. There's not type two diabetes in my family either. Nothing. It's just me. This may strike people as unusual, but there's another clear pattern in my family which makes perfect sense. Autoimmune diseases. Almost exclusively from my father's side of the family, there is a very strong pattern of autoimmune disorders, big and small. Besides my diabetes, there's addison's, lupus, hypothyroidism, hyperthyroidism, hypoparathyroidism, otosclerosis, scleroderma, vitiligo, dermatitis and rheumatoid arthritis- all autoimmune linked. And that's just the stuff i know about. My point is, we do autoimmune diseases. You may as well make us t-shirts. 

Up until this year, i had mostly just accepted diabetes as my portion of these lovely (<-- sarcasm) genes. I figured my immune system had chosen to pick on my pancreas, it got that genetic aggression out of its, uh, system, and now we can all move on with life. Not so much apparently.

With a hashimoto's diagnosis, it's not longer just diabetes. I now have diabetes AND ---. l'm now more complicated, more high maintenance. And more at risk of more autoimmune crap. A lot of people get no more than the diabetes-hyothyroid combo. But some others go on to get a third disease, usually addisons. Its common enough to have a name: poly-glandular autoimmune syndrome. Knowing this, and knowing my genetic background makes me nervous. I had some extra tests done when my hashimoto's was diagnosed, and nothing looks unusual so far. But i know i need more extensive tests done. And most probably semi-regularly from now on. 

In the mean time, it feels like there's always a constant worry in the back of my mind. i no longer trust my immune system to stay at bay. I don't trust it to keep me healthy. I supplement my diet with a whole bunch of stuff, including high quality, high dose omega-3 FAs (EPA and DHA). I'm trying to exercise more. I'm trying to reduce my carbohydrate in take (although i'm not completely sure i buy the whole low-carb thing- more research into that is on my to-do list). I'm trying, really really trying to minimise any levels of inflammation in my body. I've tried to not be too stressed about my thesis and up-coming exam (way easier said than done).

And everytime i don't feel that great, feel a little more run-down or emotional than usual, a little more drained and tired, every time i get a joint or muscle injury that resurfaces or just won't clear up; a little bit of that worry resurfaces. Just for a moment.  But it's there.

I'm still here..

I'm still here. I'm around, I promise...
I finished my thesis/dissertation/monster... Submitted end of August.. Phew!
Since then, i took a too short but much needed holiday in durban, visiting two of my favourite peoples, my brother and TUE (I would insert some photos from the trip. Except this is unnecessarily complicated to do from my iPad, and I'm lazy. I admit it.), and have been oscillating between catching up on much needed sleep and frantically preparing for my oral exam/defense.. Which was potentially going to be this week. Seeing as I found out yesterday that its in the beginning of november I can breathe a bit, maybe write some blog posts (?) and keep studying, because i'm so not ready yet... But i'm nearly there. I'm nearly finished. this bumpy three-year ride is nearly over. The end is in sight.

This is a familar feeling for this time of year. We have the most beautiful weather, with spring rapidly merging into summer, jacaranda trees bursting purple blooms all over the place, jasmine bushes and syringa trees more subtly perfuming the evenings, and the most fantastic high-veld storms cooling the evenings and lighting up the sky. And the only thing getting in the way of you just sitting back and soaking in the beauty is the last stretch of school work, matric, or university exams. Strangely enough its actually enough to incite some melancholy, it brings back so many memories from childhood through to student days, plus the remembered sense that you just have to get through this last stretch, and then its full blown summer, december holidays, and everything that comes with it...

Today has been a stormy, gloomy, rainy day. I love such weather, its the perfect punctuation to our mostly bright and sunny heat. And with it all comes some of the familiar and not unwelcome melancholy as well. I've been looping the Jars or Clay Furthermore double album all day. This is some of my favourite music, heavy with emotions and memories for me- and perfect for this weather, and this time of year- there are just so many memories to link the two, good and bad.

So hopefully more posts will follow with some D-related stuff that needs to be written and told. For today, i leave you with a particulary beautiful live version of a track from the Furthermore album- enjoy :)

One year already

Huh, would you look at that- according to my blog post history, turns out that today, one year ago, i started using an insulin pump...
i *knew* there was legitimate reason for me to be craving a cupcake this afternoon! Darn, should've gone with my gut (pun?).
Instead, sans cupcake, this anniversary (pumpaversary?) was marked by me making a rookie-mistake: i inserted a new infusion set without pulling those little tabs off the sticky part. Doh. Trying to pull those guys off while trying to keep the needle stable and stuck in your skin is no small challenge!

Ok, some quick thoughts on a year of pumping...
-I love love love my insulin pump.
-Seeing how much i can fine tune my doses- basal and bolus- makes me realise probably just how bad my control must have been on MDI. And has me thinking, seriously, how does anyone manage to manage diabetes properly on MDI? Unless you just stick to a robot- type of routine??
-Not that everything is perfect with a pump all of a sardine. It's still diabetes. It still throws curve balls. For the most part, i still feel like a rookie at the whole thing. There's still a lot to work out, and rework out. And adjust. Again and again. The cool part? It's so much easier to do that with a pump..
-I have yet to do a round of proper basal testing. It's kinda a factor of time. And kinda a factor that, every few weeks/ months, my routine, (the season), and with it stress levels and food habits, seem to change. And with it, my insulin needs change. So i don't really see the point in the whole fasting schlep for now. I just adjust as i go along until i find a pattern that works.. Until i need to adjust again. (did i mention how easy pumping makes it to adjust dosing and stuff?)
-I'm still working out what to do with the pump during excercise. Like running, and dance class. (and sand boarding, and kayaking- stories yet to be told). It does sometimes make me wish for a waterproof pump to be available here...
-I'm till trying to work out what to do with the pump when i wear a skirt or dress.
i'm still working out good spots for infusion sets and cgm sensors. I'm kinda small , so real estate is a litlle limited. Plus, to be honest, the needles do still make me kinda nervous. So it takes me a while to psych myself up to trying a new spot. I'm working on it..
-On the topic of sensors: as much as i love my pump, one thing that i thing has made the hugest (is that a word?) difference to how i try manage my diabetes has to be the cgm (i've got the medtronic veo with integrated cgm, so this still counts as being about pumping). Holy cupcakes, batman! i love having the real-time in context information. No it's not perfect. But it helps. I have yet to go anywhere near any sort of software that will help me analyse trends or anything, but in the day-to-day, meal-to-meal, moment-to-moment-ness of this disease, the cgm is awesome. Seriously.
-On the topic of batman... I seriuously can't wait to see the dark knight rises! *excite*
-ok, so that had nothing to do with pumping
-I'm sad i didn't get a cupcake... (still not really about pumping?)
-After a year of pumping (ok, only 9 months with the veo pump, but still) i have yet to name it. My cgm transmitter has a name (joe, if you're wondering). But i have yet to think of something suitable for the pump. Any suggestions?



My sleek and sexy (in a bulky, pump-y kinda way), black, yet to be named, Veo. Always by my side/in my pocket/tucked into some random item of clothing...

Missing stuff. Like teeth..

So... I've missed some opportunities to go backbacking, and to visit some friends far away. I missed D-blog week (which made me sad). And, apparently, the one year mark from me starting this threadbare blog (blogaversary?) (which i'm ok with). I very nearly missed mother's and father's day, and some friends' birthdays.. No wait, i missed a few of those too. Most recently, i missed an opportunity to go to cape town for a few days. And lately i've been missing a friend who moved to london earlier this year (but that's a different kind of miss).

All of those are just noticable chunks of life, which stubbornly carries on when you're frantically trying to meet deadlines and finish work. Me, i finally finished up experiments (ok, i may have just decided to stop, and stubbornly refused to do any more.. In a hopefully nice and respectful kind of way..) wrote for a month and a half and finished the first draft of my thesis/ dissertation. I'm still not sure what i'm meant to call it- it's the 150 page-long culmination of the past two years of lab work and research (literally blood, sweat and tears), but i'm only getting an MSc out of it (i would feel slightly cheated about this, but i'm mostly just relieved to be coming to the end of this process). It's not over yet- i still have much work to do (my supervisors collectively chewed it up and spat it out gave me a lot of feed back, comments and corrections on the first draft), but this is the end stage of the work. A stage that i at one point seriously didn't think i'd ever get to, so i'm grateful even as i sit re-writing entire sections.

You can miss a lot of life when you're stuck behind a computer for a month and a half. Health stuff, however, carries on. Diabetes isn't a fan of being ignored for even a day. Let alone over a month. I adjusted basals, i tried to exercise kind of regularly, i made an effort to eat real food, as opposed to student-style junk food. Thinking back over it (logging is not my strong point), i think i did mostly ok.
And i still had to make doctor's appointments. I had an HbA1C test, which was ok, and other tests, which were not so ok, and worthy of a whole other blog post.
I had an opthamologist check-up. My first one since 2008, he was keen to point out to me. Woops. I clearly still have appointments to catch up on since my freak out last year. Thankfully, grace abounds and all is fine in the eye department. Phew.
Then there's the physiotherapy i've been going for this past week- somehow while spending most of my time seated behind my desk, i've managed to cultivate an adductor injury, which i'm finally getting sorted out. (is it just me who, when describing all my medical adventures to non-diabetes ppl, starts to feel a little like a hypochondriac? especially when i have normal ppl stuff on top of diabetes stuff? Can't i just have one?)
My latest health adventure? I managed to pull off the crown of a wisdom tooth yesteday while flossing (that's nearly as gross, but strangely not as painful, as it sounds.) i'll keep the further gorey details to myself, but i'm minus a wisdom tooth, drugged up on antibiotics and painkillers, and consigned to a liquid diet for a few days (yup, that's just great for controlling blood sugars).

Way to make a weekend- soups and yohurt and thesis corrections, in between myprodol naps.

dark romantic

In the spirit of finishing those experiments I mentioned last time, I've spent about 25 hours working on our lab's fluorescent microscope in the past week. Besides the obvious operating-the-microscope part, this also involves sitting in a specially cooled, 3x3 meter room, with walls painted black and no light bar that which the microscope itself throws at my sample on the stage, and a dim computer screen that I view the images on.  Spend enough time in the bat-cave that is the microscope room, and it's easy enough to go a little bat-nuts, especially in the moments (I've had many, many such moments) where stuff just doesn't want to work. That said, I love this microscope, lasers and all (in my science-warped head,  she's my baby), and this room can be as much a sanctuary as a mad-house.

I woke up this morning frustrated and exhausted- in the past 72 hours, just as I've decided to finally get round to basal testing, my blood sugar's gone bats on me. I've been chasing lows, I spike a little, I plummet back down low, I spike a lot, i level out, i plummet again... on and on it goes. add to that my CGM alarms that kept going off all night last night, convinced that I was dying, when this really was the one time I was level and in range.well, until i went low again as my alarm went off this morning...

suffice it to say I was in a dark mood when i got to the lab this morning. As I opened up the microscope room, surveying the quiet, the gloom, the little blinking lights on the monitors and boxes- there was a heavy, velvet peace in the air. As if the electronic darkness spoke to me, welcomed me into the sanctuary.
"hello, darkness, my old friend"
but a heavy darkness, not Art Garfunkel's, as melodic as his is. no, this darkness is deeper than that. And so today I share with you an old favourite, and the soundtrack to my refuge in the microscope room this morning.

The music, like an old friend, lifts my spirit a little, sparks some life in my gloom. My mood may still be dark, I may still be stuck in this dark bat-cave sanctuary for a while, my body may still be stuck on the glucocoaster. but i have hope and i seek patience. my sugars will level out. this work will finish.

It may still be dark where I am. So today, I'm calling myself a dark romantic. And I wait for the light.



[hat tip to the Awakening, by the way. An old favourite SA goth band, and owners of the music in the video and link]

oh, hey...

Oh, hey, blog... you look kinda familiar... I know you from somewhere, right? Oh,
wait, you’re my blog? my sorely neglected blog. ah. Right. Sorry… *awkward
silence*… It’s just that, I’ve been busy and swamped… Doing what? Well, half
killing myself trying to finished my experiments for my thesis mostly… what’s
that?... Oh, no... No, I’m not done yet. Hopefully, I’ll be done with the experiments
by easter. (Or maybe just after)(never mind that I’ve been say ‘hopefully I’ll be
done with experiments <sometime in the next few weeks> since Christmas.
Stupid experiments. Stupid OCD and needing to have everything nicely wrapped
up)… yes, then I still have to write the actual thesis… Well, I’ve got the first
two chapters, kinda, more or less… I’ve kinda hit a brick wall with that, some
scientific writer’s block. I’m kind of a little bored with it, ok??... yes, I may have
been procrastinating a little bit… well, I’ve done a bit of traveling the last few
months... no, not that much, just more than you would expect of someone who’s
meant to be finishing a MSc… sure, I’ll show you some pictures sometime…

Hey, you know what? You’ve actually kinda been on my mind lately. Yup, just
the other day (last Friday, to be precise), it was a year since the medical aid freak out. I know, crazy, huh? A year since something snapped, a year since the
proverbial ball started rolling, in the direction on medical aid changes, insulin
pumping, CGMing, discovering the DOC, and even starting you blog, sorry
state that you’re in. I may have remained primarily a lurker in the DOC, but
nonetheless, much has changed, much has improved.. strange, huh?

Huh, a whole year...Only a year…

*awkward silence… groping for something to talk about...*

so…

*grasp on small talk flails wildly, looking for a topic that won’t leave me rambling
to my blog for the next hour or so…*

um...

*...and closes on--- nothing*

ok… well, I should get going, need to get back to what I was doing, and, uh,
stuff. But hey, we should stay in touch. Yeah, I’ll totally stop by for a longer chat
sometime. Soon, soon. And I’ll bring photo’s. I really do have lots of photos. Ok,
cool to see you again.
Bye...