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.

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.

A warm fuzzy moment of appreciation for friends

The past few days, I’ve had a few opportunities to realize that I really have some awesome people in my life.

My work environment is pretty casual, and a lot of us get along very well, so it’s a friendly place. A couple of the people at work were privy to my medical aid freak-out, and most of them have listened to me go on about medical aids, and medication, and more recently, me wanting to get an insulin pump. So many of them have shared in my enthusiasm and excitement this week that I’m finally on a pump, and everyone has been really curious about it and wanted to see it, and see the pump site and asked lots of questions about how it works (I still have the enthusiasm of a new pumper to answer all these questions. No doubt in a week or two I’ll be over it a little). And they’ve been really supportive and understanding when I’ve been less than fully functional thanks to low blood sugars. At one stage I even had one of them running round finding me fruit juice while I sat feeling rather useless, struggling to get my blood sugar up. I’m normally stubborn and independent and refuse to be helped, but this week that stuff has really meant a lot to me.

I was invited to supper with two recently married friends on Thursday night- something which is always a treat! The wife, a doctor, is almost as excited about me having a pump as I am! Which makes me more excited, which makes her more excited, which makes me… ok, you get it. It was cool being able to chat about it, among other stuff, and thoroughly enjoyed  their company over a good mealJ

I met up with a dear old friend after work on Friday- old as in we’ve known each other since we were 3 or 4 years old, not old as in aged and wrinkly. She’s known me longer than anyone else, bar family, and has seen me through the ups and downs of life so far- D and all. We’re pretty different, but so similar at the same time, and I love our friendship, because even though we don’t get to see each other nearly as often as I would like, whenever we meet up we can chat as if we saw each other yesterday. D has always been accepted as part of what makes me me, so, with a few curious questions, my new robotic pancreas was quickly accepted as part of me and adding to my quirkiness, and we quickly settled down into catching up. An evening of good company, good conversation, and loads of laughter, over some chocolate martini’s, was just what I needed after a slightly frantic, frustrating and draining week.

Not to mention the people who have shared in my excitement and enthusiasm for taking more control of my diabetes, and getting a pump, even if it has had to be from a distance (many phone calls and facebook comments)- every bit of support counts and I appreciate it so much.

Diabetes runs 24/7, and mostly it feels like I’m running the show on my own. I know most of these people don’t really “get” diabetes, and have no idea what it’s like to bear the load of the disease all the time, 24/7/365. Which is ok, I don’t expect them to. Besides, I don’t make that much of a thing about it for them to probably even realize that there’s that much that they’re not “getting”. But even despite all of that, they’re willing to share in my good times, and offer support and encouragement through the tumultuous times.  And it helps me realize that I have some amazing friends, each of them a blessing for which I’m grateful.

My friends are awesome.

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.

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