Sunday, May 30, 2010

Oh, wait...

When I thought about the idea of a cure for diabetes this morning a picture of myself jumping up and down and dancing and yelling/singing "Cure! Cure! Cure!" on the grass of my front yard flashed through my mind... So, I guess my reaction would depend on the day that a cure arrived.

Thursday, May 27, 2010

Dream a little dream- Life after a cure... Diabetes Blog Week- Day 7 (Ha! I did it!)

Lightyears ago, when I was working in a little used bookstore on Queen Street, my boss told me this story about his brother... He said that his brother had a form of epilepsy. I don't remember the name of it exactly, but he had frequent and severe seizures. He was on a fair amount of medication to curb them, but at some point brain surgery became an option. So, he went through with the surgery and the doctors were fairly certain they'd removed the part of the brain that was responsible for the seizures. He was so terrified of them returning though, he refused to stop taking the medication they'd first prescribed him.

I tell you this, because it was one of the first things that came to my mind when I read this final topic for the Diabetes Blog Week was this story. And, honestly, if suddenly the perpetual five-year-plan until the cure for diabetes was up and sitting there was a cure... I think I'd still be testing my blood sugars for a good long while after: Every time I got thirsty. Every time I felt tired. Every time I got shaky. And, yeah, it would probably subside a bit over time, but I'd always wonder if and when it were coming back.

Another story that came to mind: when I started using an insulin pump it totally a positive change for me... physically. For the first time that I can remember I wasn't tired all the time. I think I mentioned somewhere here before, but when I told one of the nurses/diabetes educators helping make the transition to the pump she told me that this was fairly common. Apparently long acting insulins are pretty hard on your body. NPH, the crap stuff that I was on for a large part of my MDI routine, is notoriously nasty... which why it is affectionately referred to as "Not Particularly Helpful" amongst some medical professionals. That plus the fact that I spent years with impossible to avert daily lows, some of which were so low I felt like they were digging my grave for me, I got kind of pissed off that it took sooooo long for me get on the pump.

Actually, I don't even think I realized until I just wrote those words, that a lot of my anger when I got my pump was probably related to me being resentful for all those years of crappy insulins (remember the infernal Regular and Lente???) and multiple daily injections. I know it works great for a lot of people. But, really, that stuff was my own private hell, which is something I couln't realize until a better way of being came along... kind of what I think the shift from insulin pump to cure would be like...

Finally, my very first knee-jerk reaction when I read the topic for today's post: I've met so many awesome people because of my diabetes, I have to admit that I had a moment of sadness thinking that our relationship might go away without the common link of illness. Which I know isn't true- I think the relationship would just change. We might not have the same day to day struggles with the "D-beast", but I think we'd always have the lingering link of being ex-D-beast peoples. At least, I hope we would all stay in touch. I would miss you guys if you all went away. I guess the second thing I realize as I write this- my online D-friends aren't just diabetes support; sometimes you guys are life support. Which is great, so I wouldn't want that side-effect to be cured along with the broken pancreas.

Anyway, I don't mean to end the week on a bummer note. Nor do I don't mean to suggest that I wouldn't jump at a cure in a nano-second or that I wouldn't be happy (extremely happy!) or grateful. I think, though, that having recently just made the shift from needles to insulin pump, the reality of good things sometimes being a mixed bag is still very much a reality for me. And, maybe like most things in life, it's just complicated.

Here, though, I'll end with some happier thoughts:
- Having said all that, I'd totally test the limits of my new found food freedom by a one-time gorge on deep-fried ice cream. I don't know why, but I really get a hankering for that stuff every now and then... and cherries. I really like cherries... and pie. Cherry pie, of course. Stawberry-rhubarb too. Pie is one of the worst things to carb count.
- I think I'd also keep my pump by my pillow as a nightlight, 'cause I've gotten kind of attached to the little guy. I might even wear it around in public occassionally and tell everyone it's my new super gigantic pager...
- And my last, somewhat perverse thought? I'd tell everyone my diabetes was coming back in five years... just so that if it really were creeping back, it would take it's dear sweet time about it.

Wednesday, May 26, 2010

Diabetes Snapshots... Diabetes Blog Week- Day6... almost there!

This is Pump-kin...

And this is my relationship to Pump-kin in pictures...

For better or for worse, we are attached at the arm.

Sunday, May 23, 2010

Let's get moving... Diabetes Blog Week- Day 5 + then some...

Oh, exercise. It's kind of difficult when you're in school to do anything but school... But, I try!

I used to run, but my hip joints are kind of messed up and running started to really hurt. So, that was the end of running. Instead, I walk a lot now. Usually about 45 minutes to an hour everyday. I should really do more variety of things, but right now it's kind of difficult because it's finals crunch time. It's kind of frustrating, because it ends up affecting my weight and, or course, my blood sugars.

You know what keeps you pretty active though: looking after kids! More specifically, I would say, the younger the kids and the greater the number the greater the work out! I worked as a nanny for like 10 years throughout my first degree and several years later. I noticed the biggest difference when I looked after the three young children I was with for about five years. Whenever I was on holidays my blood sugars would go up and then I'd adjust my insulin to compensate... and then back down again once I started working again. I was always amazed
how much less insulin I needed going back to work... I guess lifting, carrying and running after twenty-some-odd pounds of little people throughout the day adds up!

The other thing that would need to re-adjust when I went back to work is my tolerance for noise, but that's not really diabetes related ;-)

Thursday, May 20, 2010

To Carb or Not to Carb... Diabetes Blog Week- Day4 + then some...

I'm a carber. I like carbs. Maybe even too much.

I think I learned how to stuff my face a little too well when on MDI. Because I always needed half-doses of insulin I had to eat to cover my insulin a lot. I don't think I fully realized how many carbs I was eating until I started on the pump and things got much more precise. I was glad for that, because it meant I have a lot fewer lows... but it was a little shocking! Also, I found that some carbs that were okay on MDI are just too difficult to bother with (at least on a regular basis) when I switched to the pump. Pasta and rice are a pain. I always end up spiking at some unforseen time. And, bread is just tricky to judge...

Anyway, basically I like carbs and I'm going to continue liking the carbs, but we're still figuring out how best to work together :)

I thought this was a funny carb joke... meat is soooo clueless ;)

Monday, May 17, 2010

I don't know what to do with this:

I have this seminar class for my MSW where we discuss our major research paper (kind of like a thesis). It's not a regular class; it happens maybe once a month. Today was one of those classes and something keeps happening that I don't know what to do about...

One of my friends in the class is doing hers on the narratives that people construct around their illness. My friend's thesis is particular to experiences of cancer, but we talk about illness more generally too... The weird thing is that everyone in the class talks about it like I'm not there or, at least, like I have no experience of living with an illness or condition. It makes me feel weird every time... Actually, it makes me feel sad (I maybe had a bit of cry when I got home and thought about it).

I don't know what to say though. I don't want to make other people feel weird or guilty or, worse, become the token sick person that everyone is worried to make a comment around.

Well, I just needed to spew that out somewhere... So, there it is.

Your biggest support(er)... Diabetes Blog Week- Day 3 + then some

Right. So, back on track here... though a little late.

When I was in the ER I thought about this question a lot. Who is my biggest supporter?

Well, if I had to choose a biggest supporter(s), it would be the D-OC. I don't mean that my parents and my friends aren't supportive, but before I found out there were all these people online with diabetes I felt really different and no one really understood any of what it was like to live with diabetes.

Particularly poignant in this journey was when I got my insulin pump. I was really excited before I got it, but once I had to wear it all the time I realized that diabetes was no longer something that I could test, inject and then put away in my bag- it became something that was with me all the time. My pump became a memento mori of sorts, always there to remind me of the diabeetus. And, from there, I felt an anger about having diabetes that I'd never felt in my life. I got angry that everyone else I met got to eat whatever they wanted and didn't have to input it into a stupid machine. I got angry that my body failed me in a way that no one else understood. And then I got super angry and sad when one day I got on the subway are realized that everyone was starring at my infusion site on my arm and the pump on my hip... I got angry, because all of the sudden I realized I'm different and there was no one around who got any of it...

I know a lot of people read about my visit to the Banting House museum back in January where I think I came to terms with a lot of the major angry feelings that were bothering me (I say MAJOR feelings, because I still have those days when I want to throw my pump and meter across the room!). But, anyway, coming to terms was some of that stuff wasn't just about the visit. I think it was also because for the first time in my life I had people to talk or even just see online that were like me. So, whether I talk to you about diabetes or read your blog or just even see that your online... and whether you have diabetes or have diabetes by default because you are speaking up for a loved on... I think that you guys are my biggest supports and supporters. I'm really glad I stumbled onto you all and thanks for making me feel at welcome and... dare I say... normal.

From the bottom of my pump heart: Thanks.

Sunday, May 16, 2010

Diabetes Blog Week... THWARTED!

Well, seems like Lungs got jealous of this weeks spotlight on Defunct Pancreas and decided to rebel. On the weekend I stayed at a friends house, looking after their kids while they went out. I started feeling kind of wheezy and my airway started kind of constricting. I'm allergic to a lot of frangrance and this has happened before. Usually, once I get away from whatever it is that is bothering me, the difficulty breathing dies down. But it kept going... for one day... and then two days... and then on the third day, I started scaring my co-worker with my gasps for breath throughtout the afternoon. I got home and it got worse. The steroid inhaler that I take everyday wasn't helping. I finally decided it was time to haul out the Ventolin, but it did nothing to help either (except annoy Defunct Pancreas and raise my bloodsugars).

I kind of knew at this point that I was in trouble, but I play this silly game whenever I realize I should visit the ER. In Ontario the government has a service called Telehealth, whereby you can call a number and speak to a registered nurse about medical questions/issues. So, my silly game is that every time I know I should see a doctor I call them first. In my defense, though, sometimes they actually tell me it should be fine to wait to see my family doctor! This was totally not one of those times and the nurse on the other end told me to get my ass to emergency... and, so, I went...

First thing- visit triage nurse. They are generally grumpy creatures. I don't really blame them; they're the gatekeepers and I imagine they get bugged a lot, but at the same time it is kind of annoying to be the patient on the receiving end of their grumpy... especially when you can't breathe. She looked at my last name and said "Well, that's a weird last name." Then she reached my first name and said, "Oh, well, that's a weird first name so." She didn't comment on my middle name... because it is run-of-the-mill anglo-saxon? Don't know... Anyway, when I told her I was having trouble breathing she told me I seemed to be able to talk just fine. In my mind, I responded something like "Right. I'm just effing with you, 'cause sitting around in the ER is much more palatable way to spent my night than sleeping in my warm bed." In real life, though, I just said, "Oh, it's just my airways feel really constricted." Eventually, I got the wristbands and got to sit back down in the (aptly named) waiting room.

I'd been through this before and knew that if it being around 11pm when I arrived and not being in any sort of acute/dire emergency, I'd be leaving aroun 5am. I hunkered down and started to read school stuff. South Park was on... then some cosmetics advertising show... then Anderson Cooper... then... I don't remember. At some point I got called in to sit on a bed for about twenty minutes before seeing a doctor.

I don't particularly like ER doctors. I've had some really nice ones, but every now and then you get the jerks. (Remember that time in high school that I went to the hospital because I was throwing up everything under the sun, but had just taken a huge amount of insulin... and they "diagnosed" me with a stomach virus (as if I didn't know!), gave me a shot Gravol and sent me home, telling me I didn't need to be in the ER? Or how about the time I had a head injury and they told me the pain was from diabetes?) This time, though, the doctor was awesome! She listened to what I had to say and didn't relate any symptoms to my diabetes (bonus!) and was actually kind of funny (double bonus!)

Then, I went to a set of chairs to wait for chest x-rays to be done. The guy to my right was an older man with his son, who had hurt his foot. The guy to my left was a younger guy that had hurt his ankle... and the guy to his left... I don't know why he was there. He was missing his front teeth and was waiting for an x-ray of his neck. I don't think those things were related though. Everyone was really nice. Mostly we just sat in silence, but every now and then the older man beside me would grumble about the wait. I was the second last person to get x-rayed. The technician, coincidentally, also was missing his front teeth! Hockey players? Maybe not...

X-rays were good though! They let me look at them and the doctor pointed out what all the different parts of the images were... I liked seeing my heart in the middle (well, technically, slightly to one side) of my rib cage. That plus all the bones looked pretty together and I was glad to see that my insides didn't look nearly as bad as I felt they did... In the end, the doctor said that some of my lymph nodes were swollen and she suspected I was getting a cold, which exacerbated my allergies/asthma. She sent me home with a new Ventolin puffer at a higher dose. I had to take four puffs while I was there, before I left. Which, on my way home, led to me hack up a tonne of grossness that had been trapped in my lungs. Sounds icky, but it was the best feeling afterward.

I was back home and in bed by 5am. I thought that was pretty good time. I'm still not breathing the best, but am not to the point that I'm whistling through my throat/seeing stars... Oh, and I did end up getting that cold (high-five best ER doc ever!). I'm hoping when it passes, things will go back to (my) normal.

So, that's the story of my jealous Lungs and their attempts at glory. Sorry about missing out on the scheduled posts... But just to teach Lungs a lesson, I plan on completing them anyway over the next week.

Tuesday, May 11, 2010

Making the low go... Diabetes Blog Week- Day 2

I'm not really liking this post topic... My pancreas still makes some insulin, so I don't need super lot of insulin injected. That's lucky in some ways; not in others. Before pumping I would have to eyeball half units on my syringes. It was hit and miss and usually I missed... meaning that I had a lot of lows. A lot of really really bad lows. It got so that I couldn't even feel it until I was around a 1 mmol/l (18 mg/dl)... and that's how learned to over-eat a low: EAT. EVERYTHING. IN. SIGHT. Anyway, eventually I figured out that if I just didn't eat, I didn't have to bolus and I didn't have to go low. Which, I'm sure you can guess, started a whole new problem.

Things have gotten better the last year or so that I've been on the pump. I have a low maybe once a month and can feel it now at around a 4.5 mmol/l. I usually just keep a juice box in my knapsack to treat a low. If it's not too bad a low though, I usually just dial down my basal for a little bit to cover the lower blood sugar... And, to be honest, that's probably my favourite way to treat a low. I've gotten sick of stuffing my face.

Monday, May 10, 2010

A day in the life... with diabetes: Diabetes blog week-- Day 1

Well, to explain the beginning of my day we have to revisit the night before when I take an itty-bitty amount of an old-skool anti-depressant that makes me drowsy so I can sleep... You need to know this because the beginning of my day is usually spent in a bit of a slow fog. Which means that mornings are scrunched for time, but a bit slow, because I usually end up sleeping in more than I meant. Inevitably what insues is:
  1. Go to bathroom and wash face, take puff of Advair inhaler (only during allergy season), rinse mouth to avoid the side effect of thrush and brush teeth... if I'm actually a bit early in my schedule I may decide to put on mascara
  2. Get dressed, which usually entails having to figure out how to untangle my insulin pump tubing from my bra strap and/or any other piece of clothing it decides to wrap itself around in a completely uncomfortable way
  3. Pack my bags (I know, I should do this the night before!)
  4. Race through the kitchen and grab a breakfast pita/granola bar/fruit and juice box
  5. Walk to transit (either subway or streetcar)
  6. Sit down to ride to placement or class, test my blood sugar, eat, bolus, take anti-depressant and maybe painkillers (over-the-counter or perscription for joint pain)
  7. Start the day
What follows depends on the day and what I am doing, but tends to look a bit like this:.
  • I test my blood sugar and eat lunch around 1pm. To be honest, I eat a hefty lunch. It is my biggest meal of the day. So...
  • I test my blood again in the afternoon. It's usually fine, but sometimes hefty requires an extra little bolus.
  • Around 5pm or 6pm I usually end up walking home from downtown, where class and placement happen. It's about a 45 minute walk. Sometimes, depending on how I'm feeling I test my blood sugars toward the end of the walk or when I get home.
  • Some days joint pain is worse in the evening, so maybe more painkillers or a nap. When pain is bad, inflammation is bad and blood sugars are bad, so I end up testing and correcting more throughout the evening.
  • Otherwise, I usually (check my blood sugars) have a snack in the evening and sit at my computer and do school work.
  • Around midnight I have my shower, check that my site is ok after (and check that I've reattached it before bed! It happens that I forget-- though I've always remembered once I get into bed and move to place that technical appendage just under my pillow...)
  • I take my smidgeon of groggy pill, a multi-vitamin and eventually fall asleep... zzzzzzz
And voila! That's the average weekday for me this year.

PS- to read about the idea of Diabetes Blog Week, please see Karen's Bitter-Sweet Diabetes Blog

PPS- to read the posts of other participants, please link here: Participant List

PPPS- Mid-afternoon UPDATE: oh, and today's day-in-the-life also included buying supplies... Two boxes of infusion sets, a box of insulin cartridges, some skip prep... all to last about two months = $441.46 CAD... I'm lukcy in that I get the money back from the provincial government eventually, but sheesh!

Sunday, May 2, 2010

Little known fact...

Godzilla has diabetes and was suffering from an extremely bad low when he raided that city... Nom. Nom. Nom.