I haven’t had a chance to fully formulate my thoughts about my new Medtronic 640G insulin pump as it’s only been three days (for the record, I don’t have a financial relationship with Medtronic), but don’t want to keep my dear readers – yes all two of you, Hi, Mum! – on tenterhooks. So my initial reaction is that I love it and may even be so bold to say that it will be a game changer in my care. It’s refreshing and rather surprising for me to be so upbeat about something diabetes-related as it’s been a long slog with the disease lately, including a rise in my HBA1c. But I’ll get to all that once I come down from this new pump high (pun intended).
I’m running off to Guy’s Hospital to get my long-awaiting new insulin pump. As the acquisition of said pump has been quite the battle royale – to put it dramatically – with the NHS, it almost feels like Christmas has come early. (I will attempt to regale you with the saga when I have more time.) Although I’m pleased that I did not give up the fight for the new pump, I do feel that in giving up my old pump, I’m losing a little piece of my identity.
Blood sugar: off the charts, or as my old glucometer used to say, ‘High, high, high’
Progress has been made. It’s Friday night and instead of being at the beloved pub, I’m at home, sober. (That’s not the progress.) I was forced home by a malfunctioning insulin pump, and although I physically feel like something the cat dragged in, I’m feeling mentally upbeat. Yes, my usual, ‘why does this F-ing disease need to be so GD annoying’ thoughts are ricocheting loudly around my brain, but these usual thoughts are competing with new ones: thoughts of relief and pride. (This is the progress.)
The pump problems started during the day. I changed my pump reservoir this morning and when I got to work, my blood sugar was higher than normal. I chalked this up to repercussions from a mid-week work trip to Sweden – travel and diabetes are not birds of a feather – and got on it with it. Even as my blood sugar steadily increased through the day, I continued to go about my business as usual even when multiple tests put me in the 400 mg/dl region/ 22 mmol (I wasn’t wearing my continuous glucose monitor; well, I was wearing it, but I had turned it off as it was giving me whacky and incongruent readings earlier in the week). It was only when my colleagues began to ask me if I was okay and noting how pale I looked that I realised that something was amiss: all those correction doses should have kicked in by now. Not only did my colleagues ask me if I was okay, they started to actively help me. It’s at this point in the traditional ‘treatment malfunction’ story when I normally start fending off people offering assistance.
But something was different this time. Perhaps it was desperation, perhaps it was confusion, but I like to think it was maturity. I hope the fact that I let my colleagues essentially hoist me into a cab home (I wouldn’t go so far as allow them to take me to the hospital, baby steps), is an indication of my changing attitude to having an illness: it’s okay to be vulnerable, it’s okay to accept help, especially when I’m lucky enough to be surrounded by incredibly kind and compassionate people. I won’t die from shame, and if I remain more open to help, then I won’t be dying from this disease anytime soon.
For those who are wondering, it was only after I took my pump off that I learned of the problem. The plastic cannula (see photo above) was bent at a 90 degree angle preventing the insulin from entering my body,
Blood Sugar: 4.8 mmol or 86 mg/dl
There are two topics that are competing for my attention lately. One fun, one not so fun. I’ll focus on the fun one today and eventually, if I can face it, write about the not-so-fun topic.
The fun topic is that someday, in the not too far future, I will be Mrs. Sugar Daddy (but only unofficially, as I won’t be changing my name)! When Sugar Daddy proposed to me, in Kew Gardens – see bench in photo – I actually cried with happiness. And although this happiness is still very much real and accessible, now that the initial euphoria has abated, when thinking about getting married, I also want to cry with fear. And this isn’t solely due to the fact that I’ve been married before (I’ll save that story for a rainy day), but more a function of how living with diabetes adds an extra layer, to most, if not all of our life’s experiences.
Short term, planning a wedding is stressful and we’ll be doing it while I’m still getting comfortable with a new and very demanding job. Stress always drives my blood sugar up, up, and away so I will have to manage this carefully.
Getting married means that the prospect of having a child is much stronger. And the prospect of giving birth means that getting to a HbA1c of 7, or preferably lower MUST become a reality.
Who knew that getting engaged to be married would be a catalyst to a stronger engagement with my disease?
For anyone questioning my sense of humour, I acknowledge, that despite this post’s introduction, it ended up being about as much fun as sticking a pen in your eye. Aren’t you glad that I didn’t go with the ‘not fun’ topic?
Blood sugar: 8.9 mmol or 180 mg/dl
Although I generally don’t mind discussing and contemplating most things, if something makes me really uncomfortable I can get very good at the art of distraction. This perhaps explains why I’ve been so quiet here lately. But as part of growing up is facing things head on, I’m forcing myself to sit at the computer and write down what’s on my mind.
I’m just finishing up a two-week break before I start a new job. These two weeks have been nothing – at least superficially – but relaxation, including idyllic trips to the Netherlands and France. Despite my Life of Riley, I’ve had an undercurrent of anxiety, which bubbles up occasionally and I now want to address head on.
One could argue that it’s perfectly normal for me to be anxious before starting a new job, even if I’m also incredibly excited about the job. But I think these concerns that I’m wrestling with are more than the usual ones evoked by the start of a new job. If I’m really being honest with myself (honesty: another often unpleasant by product of adulthood), it’s the fear of what will happen – or not happen – with my diabetes as all of my time and energy will be consumed by acclimating to new processes, new people, new deadlines, new tea-making facilities, et cetera, at the new company. Even the lack of posts over the past month is indicative of how easy it is for me to relegate diabetes to the bottom of my priority list. How, and to what extent, will my health be sacrificed while I try to prove myself? It’s happened before at work and I really don’t want it to happen again.
I also didn’t tell my new employers about diabetes during the interview process and even took off my medical alert bracelet (which was due to shame, a shame which I’m ashamed of) so I will also have to deal with how and when to tell them about my diabetes (‘No, that is not a pager, it’s my insulin pump’). I was at my former company for more than six years, so I can barely remember how I dealt with these discussions the last time around.
Yes, I’m incredibly anxious about how this new job will impact my health, but hopefully (and I know I’m being optimistic here) the fact that I’m explicitly and publicly voicing my concerns will mean that the stretches of time that my eye is off the diabetes ball won’t be too long. And please, friends and family, if you read this, let me know if it seems like my priorities are off.
Phew. Now that wasn’t too bad. Off to pick my ‘first day outfit’, another anxiety-producing activity.
Blood sugar: eyes too blurry at the time of writing (chicken scratching) the post to navigate small drops of blood on tiny strips.
Joy, relief, elation, thrill. I may be blind as a bat right now, but I’m one happy, blind bad. I’ve just finished my appointment at Moorfields Eye Hospital, and my eyes are still very dilated and unfocused. I have diabetes-related vision problems which I’ll go into more detail once I research whether disclosing diabetes complications publicly could lead to health insurance denial if/when I move back to the States. I’m in this state of euphoria because I’ve just been told that I don’t need (very painful) treatment and don’t need to come Moorfields for another 6 months. To put this into context, there was a time when I was coming as frequently as once a week for treatment.
Although it was a very pleasant meeting with the doctor, he did gently remind me that I need to get my HbA1C closer to seven in order to substantially lower my risk of going blind. He was rather apologetic about it, remarking that although it completely stinks and is unfair that I have this disease, I must take responsibility for it nonetheless. Well said, doc, well said.
Even with this warning, I’m off to merrily skip on home. Let’s hope I don’t skip onto the tube tracks or into the canal. I don’t mind being a blind bat, but I would prefer to not be a blind, dead, bat.
Blood sugar: Your guess is as good as mine.
I’m normally the most vociferous advocate for the role of technology in diabetes management, but this love was sorely tested this morning when I got three different results from three different glucometers (the gadget I use to check my blood sugar/glucose) at the same time (I need to update the time on two of them). I must have checked my blood sugar a total of 16 times, meanwhile continuing to get similar discrepancies, before deciding I would have to be okay with uncertainty and leave for work. This experience almost makes me nostalgic for the days when I would pee on a stick, which only gave a ballpark range of blood sugar. At least back then, I knew it was a crap shoot.
Blood sugar: 11 mmol or 218 mg/dl
You know what stinks for a kid with diabetes? Easter. You know what rocks for an adult with diabetes? Easter. As a child, happiness is one more chocolate egg. As an adult, you realize that said chocolate egg will only satisfy you for so long and the conduit to real fulfillment is a little less concrete and simple. In church yesterday, the most important thing that the rector said (or at least the most important thing the rector said during the brief time that I was actually paying attention) was that love is sustenance. Doggone it, he is right!
It’s then no wonder that I’m filled to the brim and completely nourished as the long Easter weekend comes to an end. This weekend was all about spending time with close family and friends, all of whom are instrumental in keeping me sane and on track when it comes to diabetes. On Friday, Sugar Daddy and I had lunch with some of our most hilarious, intelligent, and supportive friends: Ninjeri and Alastair (who cooked the most amazing feast of pintxos), and Dana and Travis and their two very cute kids.
And then on Saturday, our friend Annabel – who has helped me through many a dark patch and is a constant source of laughter, warmth, support, and reading recommendations- my sister Daphne and her husband, Jonathan (I would need a whole book to explain their importance), and my niece and nephew – a.k.a love of my life #2 and 3 – came over for lunch.
And the best part about fulfillment via time spent with family and friends is that it doesn’t raise my blood sugar, unlike those pesky chocolate eggs.
If I ever doubt whether one can love and hate something in equal measure, I just have to look at my complicated, almost religious, relationship with the National Health Service (NHS) to know it’s possible. Oh, NHS, how you frustrate me, how you support me, how you disappoint me, how you protect me, how you give and how you take away, all while not charging me a pence. Throughout this rocky relationship, the greatest thing that the NHS has provided me is lessons is fortitude, persistence, and self-advocacy. I learned quickly that if you want anything in the NHS, you need to demand it. Normally, this just annoys me, but when I’m in one of my more loftier mind sets (usually after a strong dousing of wine), I recognize that not only does this have value for my health, but is a lesson that can be applied to many facets of life – a useful lesson for a naturally mild-manner gal.
Through gritted teeth, I force myself into one of those loftier mood (sadly without wine as I’m doing a test to check the settings on my pump and drinking would confound the results) and try to appreciate the teacher that is the NHS and put the lessons of proactivity into practice yet again. Why? Because I have work to do. I have just come from an appointment with the dietician. I should be coming from an appointment with the dietician and the endocrinologist (which I will refer to as ‘endo’ because endocrinologist – a doctor who specializes in hormones – is too long to write and definitely too long to speak), but the endo appointment had been postponed to mid-April. (Although I protested to Sugar Daddy when I received the postponement letter, I was secretly glad for the few extra weeks I would have to bring my A1C down before getting it tested.) But while meeting with the dietician, I learned that the endo appointment had been rescheduled once again, this time to July, more than four months away. So I righteously marched out of the dietician’s office and to the front desk to inquire about the endo postponement, part deux. A long queue formed behind me while I peppered the receptionist with questions. When she was unable to satisfactorily answer my questions or, more importantly, give me a sooner appointment, she finally gave me the number of the endo’s secretary. I’m now off to make some calls. Lord, give me strength!
Blood sugar: 13.1 mmol or 256 mg/dl
I’ve just come from a very difficult yoga class. I wish I could say that it was Bikram yoga as that’s really the only time when ‘yoga’ and ‘difficult’ can feasibly belong in the same sentence, but alas, it was Vinyasa, the most benign of yogas. I was sweating buckets and could barely manage a downward facing dog (which was particularly disturbing when the instructor told us to use this pose as our resting pose). What’s wrong with me?, I cried inwardly with each exhalation of my Ujjayi breath. Well, a lot of things, one might argue, but it wasn’t until I got home and checked my blood sugar and realized that I had high blood sugar (see reading above) that I could satisfactorily answer that question, at least for this occasion. That high blood sugar rendered a normally peaceful and relaxing experience into one that felt like a marathon, is a particularly poignant lesson for me right now. As I contend with a higher risk of severe low blood sugar, and experience low blood sugars more frequently, while I try to bring down my overall glucose levels, there’s been many occasions when I want to revert back to my old ways of always keeping my blood sugar elevated. I need to keep this yoga class in mind, and remember how difficult life is with high blood sugar.