Ghosts.

So, I'm living with this ghost. Well, I am haunted by a lot of ghosts, but this one is different. Somehow, I'm not sure how.

I figured out what was making me sick. It's a long fucking story and I don't feel like going through it. Basically I figured that I have really bad reactions to milk and soy. I stopped eating it. You'd think that feeling physically better would somehow equate to feeling better mentally. Apparently that's bullshit.

I am stuck amidst piles of clothing, books, general junk and I can't remember acquiring most of it. I'm trying to write papers and I can't remember how to format my papers, let alone any of the articles I've read or most of the classes I attended. I feel like I'm cleaning out a dead person's house, except it's all my stuff. I don't know who I've been for the past year... probably longer. An existence of barely getting by is apparently pretty stunned.

In some ways now I see all these small things around me and am amazed. There are some things that seem almost magical. But they are also wholeheartedly overwhelming and painful at the same time.

I remember standing in front of the remains of this magnificent dead tree and focusing on it I thought for a while, "There's an entire live forest sitting behind this one dead tree. Why do you focus on the one that's gone?" But the truth of it is that focusing on either one doesn't negate the other. They both exist at the same time in the same place and reconciling that has been a bit much lately.

5 more sleeps...

Five more sleeps until Endoscopy Day (as if it's some calendar holiday.) It should have been this past Monday, but Zuul the gatekeeper(she was very nasty) scheduled it a week later than the doctor said. It didn't dawn on me to argue.

I basically feel like I'm force feeding now. Food, all food, makes me nauseous. And, as noted in diagram above, that pain in my stomach has come back. Sometimes it hurts and wakes me up. I regurgitate most of my food, which is also not fun. I feel dehydrated all the time and my skin is peeling. The moral of the story is... why did I do this? I'm sure there was some logical reason. Right?

(Also, it's kind of peeving me that no one has asked if I needed anything during these past four weeks. Maybe people thought I would ask or something. Really, though, when someone says "let me know if I can help" or "do you need anything?" it's easy to just say, "actually if you can, could you pick up a few things from the store for me?" Having to ask something like that outright just feels rude and humiliating... especially when you already feel worn out and sick.)

This is the long verions... (Part 2)

So, this is part 2, after part 1. I started writing this when I wrote the first part, before I broke it into two parts. The original time stamp on this section read 12:58 AM October 21, 2010, but I never hit publish and instead it went through rewrites in bits and pieces since then... To be honest, I don't feel much like writing this part anymore, mostly because I'm tired of all this, but...

Bloodwork came back. Nothing. They found nothing. But, wait, I should rewind... It took everything I had to get out of bed and I was five minutes late for my appointment and the receptionist lectured me about being on time and told me that if I were late again the doctor would stop seeing me (I was obviously unwell or I would have schooled her on human rights complaints in relation to accomodating disability, but anyway... back to they found nothing...) I started crying (in part to the test results and feeling frustrating, but also in huge part because of the receptionist.) But then, the doctor wondered if I was perhaps depressed. In full-blown sob I said, 'No. I've never been depressed like this. I'm in pain..." I didn't even mention about the conversation with the receptionist. It was too much work. I did, however, manage to get sent to a rheumatologist.

They thought I had fibromyalgia, but after the appointment the rheumatologist said otherwise. She sent me for some more bloodwork. She didn't tell me what the tests were for, but I recognized the combination and names as those for lupus and rheumatoid arthritis. I was already on painkillers and she gave me enough refills to last the rest of my life. Those pills are the only way I managed to get out of bed everyday and go to school. I stopped cooking and just bought food. I stopped doing laundry. I stopped cleaning. I stopped doing anything unless I really had to...

On top of this my blood sugars decided to give me the finger. Within the span of about a week or two, for absolutely no apparent trigger/reason, my insulin needs skyrocketed. I have never had to call my endocrinologist to help me figure out how to manage my diabetes. I've been lucky in always having been able to manage on my own. So, when I called her office asking for help, she returned my call within half and hour and also got the CDE at a clinic I was registered at to call me. She just told me to keep boosting my levels until it evened out and to keep her updated. I think they stopped after I'd just over tripled everything.

Back to the rheumatologist- my tests came back normal. She eventually sent me for x-rays, because she tought maybe it was a bunch of other things and those came back fine. I was starting to get a bit peeved that all my tests were fine, but I was still feeling so shitty. I was also starting to worry that my doctors were thinking it was all in my head. I worried about that a lot, until one day I finally realized they just had no idea. I learned from all this that doctors (and maybe all people, really) are not very good at saying 'I don't know'. And, maybe they thought I thought they ought to know. I hope I didn't come across that way... I just really, really wanted them to know, which I think is a little different (thought perhaps is interpreted as the same as the former.)

Anyway, eventually the rheumatologist said something to the effect that she couldn't find anything physically wrong with me, so all she could figure was that my joints were joints were quite lose and could maybe cause the pain. Maybe I read that wrong, but somehow I took that as an I don't know. But, she didn't leave it at that-- she also said for me to come back in six months for a check-up and to come back right away if things got worse or there was swelling. That last part made a lot of difference at that point, because instead of being the 'I don't know, you're probably just depressed' or 'I don't know, it's probably just a virus', it was 'I don't know, but were going to keep on top of this until we're sure it's nothing else.'

So, I felt okay with that plan, but I was a bit skeptical of her diagnosis. Not because I didn't think her a capable doctor, but because I had a whole host of other symptoms that I couldn't explain with that diagnosis. By that point, my skin was literally peeling away in patches. I had parts on my scalp where if I scratched, I would get big clumps of skin peeling off; while after a shower, drying off my arms the skin would peel and look like little eraser bits. My hair was brittle, dry and falling out. My nails were brittle, peeling and breaking. My teeth were chipping on a regular basis and sometimes event felt like they were loosening. My tongue was flattened out and smooth. My saliva was disgustingly thick and I was majorly thirsty all the time. I was bruising, like massive bruising for no reason; while, any cut I had was majorly bleeding, even the pricks to my finger after lancing. My vision was messed. My feet and hands were tingling all the time. And my cognitive functioning was getting duller and duller and duller.... Until I started to have trouble telling the difference betweem dreaming and waking.

Even though a lot of things from the past year have been a little foggy, I do remember I kept looking at this picture:
Yeah, that picture. I couldn't figure out why I was so drawn to it. I mean, obviously, having diabetes and knowing the history of this photo (it is a picture of a child with diabetes before insulin), the picture is upsetting... But it took me until I felt well again to realize the underlying reasoning going on in my head; All throughout all of the doctors' appointments I've said the same thing over and over: I feel like I'm getting diabetes all over again- the thirst, the parched skin and lips, the lethargy... but there was something more to it that I couldn't verbalize and that was this: I felt like I was starving to death; that no matter how much I ate (and I ate A LOT) I was always famished. Except this time, instead of it lasting the few months it did with diabetes, this time it was going on for at least two years.

I'm not going to tell you what turned things around just yet. I've had too many times that I thought things had been figured out or at least on the right track, only to be disappointed. Also, I'm still very much in the middle of all this and I don't feel like I'm doing quite as good an explaination of everything as I would were it a bit more in hindsight... or maybe it's just too difficult right now. Anyway, tomorrow I go see one more specialist and I hope it is the last one with which I have to meet. I will let you know how it goes and what (hopefully something) is resolved from it.

But, in the midst of this I went to the rheumatologist... and she turned out to be really nice. She did all the usual doctor things of asking for symptoms and doing physical exams and ordering (more) blood tests. She also asked if I was doing anything over the winter holidays. I said I was just going to relax at home. She told me about how she usually goes with her friends to new york for New Years. In the end, she spent an extra fifteen or twenty minutes just talking about regular things and getting to know me... which eased my anxiety, if not physical health.

I stopped having those dreams when I stopped taking care of kids for work. That was maybe three or four years back and until recently, I'd completely forgotten about the nightmares. It wasn't the content that brought it back though, it was the reminder of the gut feeling that used to go along with those dreams brought them back to mind...

When I grow up, I'd like to be well.

This is the long version... (Part 1)

It says I started writing this 9/28/10 at 7:59 pm... I haven't been able to finish it, but thought maybe it would be easier broken up into a few posts. I guess this is part one:

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It seems to me most people have a variety of recurring dreams; throughout the entire time working in childcare this was mine: I would have the kids with me. The kids would go missing, sometimes right in front of me... just disappear. I would go around everywhere asking if people had seen my kids. I would tell them that something bad had happened to them, that I thought someone took them. Reactions ranged from those people ignoring my like I was invisible to laughing at me. Eventually, I would find the kids- lifeless, in pieces, stitched into walls... I'd find them in a myriad of ways, but never alive. I would be really upset, because I knew it was going to end like that and no one had believed me or tried to help.

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When I started feeling not so good was maybe five years back... Well, it was longer than that, but when things started to get on-again-off-again bad was about five years. First I started having really bad heart palpitations- they would knock the wind out of me. I saw a cardiologist. I had tonnes of tests- everything was fine. About a year later I returned to my GP. I would go through bouts of gasping for breath; I was tired all the time and thirsty, really thirsty. Went out for bloodwork; came back for answers- everything was fine, though slightly anemic. I was on iron pills for three months. The anemia went away, but my symptoms didn't. I was told it was likely a virus that would pass and was told to continue taking a multivitamin. Then, suddenly, everything I was complaining about went away.

That was fall. The following spring when my seasonal allergies started up: I. could. not. breath. I was given Ventolin and put on Advair. When that didn't help, they added more inhaled corticosteroid to the mix. I went from having blood sugars within range (with a good dose of regular bad lows) to having blood sugars around 20 mmol/l (about 360 mg/dl) all the effing time. I felt disgusting while I got my numbers under control... and then once allergy season ended, I'd stop the inhalers and deal with the opposite: major persistent lows.

This was just the beginning though. Every year since then my ability to breath, especially during allergy season degraded. Every time I got a cold (which went from about never to about three or four times a year) I would end up bacterial respiratory infections. I became familiar with the various ER's in the city. I've had x-rays and bloodwork at all of them. My inhaler medication just went up and up until it couldn't go up anymore. Sometimes it would get so bad I felt like I was drowning in my own phlegm. Again, I went for tests and breathed into all sorts of tubes- everything seemed fine. All they could figure was that it was some sort of allergy induced asthma.

And then this time last year, shit really fell apart. First, my skin started peeling. Especially from my scalp. I was parched all the time. Then my hair was falling out in bunches. My skin was bruising over the smallest bump and whenever I tested my blood I had times where I couldn't get them to stop bleeding. And, then, by this time last year I got tired... really tired... Like pre-insulin tired. I had times where I could muster up enough strength to get out of bed once a day. I would get up, practically crawl to the bathroom, clean up, grab a glass of water, go pee and make my way back to bed. The worst of it I remember lying in bed one night, my pulse had slowed right down and I had to actually make conscious effort to breath and in my head I was thinking 'If I fall asleep, I don't know that I'm going to wake up from this.' I fell asleep thinking of a list of what to do and who to contact in case I didn't wake up. I never wrote it down.

I can't remember now if it was before this or after that I went to my family doctor. I remember listing all the things that were happening and saying "I feel like I'm getting diabetes all over again." The colour drained from her face and she checked off almost all the tests on the bloodwork requisition sheet. This was the second round of bloodwork. She started prepping me for all the things that could be wrong. I remember none but the first- organ failure.

This would be the abbreviated version...

I feel like I've been away for a while. I keep writing about stuff that's going on, but not posting them. It's been a shitty couple weeks... well, it's been a really shitty year. Today was not good. Crappy memories of crappy things and tomorrow is the graduation I would have gone to had I not gotten really sick this year. I was going to go, I guess for my friends, but now I really don't feel like it. I feel like a bit of selfish jerk, but I know it will go in one of two ways: I end up crying and feeling badly or I end up pretending it's all good and go cry on my own. I know in the long run it's not that big of a deal that I'm graduating later...

Really, it's not even about the graduating part. I'm just sick of being sick and not having people around that get what it's like. I've been better the last month or so after changing my diet a bit. I still don't feel very well whenever I eat. I think everyone that knew I was sick is just really happy I can get out of bed and do stuff again. I think they think it's over. Just a diet change and its done. All better... But, I still don't have a diagnosis of anything yet and I keep worrying that not eating gluten and dairy just helped, but are not the real culprits. Maybe that's a silly thing to think, but I've had so many tests where they were sure they knew what it was, only for stuff to come back negative... or other times where they were sure everything was fine, only to get frantic calls I needed other tests done ASAP, only to find out those scarry tests were actually false alarms. I don't think about a lot, but it's more of an underlying worry that they'll finally figure out what's going on and realize it's something aweful and something they could have fixed had they figured it out when I first started complaining about stuff.

I think that, all of that, is why I don't want to go my would-be grad... It is just a very strange feeling to watch people move on, while you lie stuck in a rather painful limbo.

Tired of people "catching" me "sneak" sugar/candy at the office...

(I don't need a f---ing lecture- it actually makes this all much harder to bear.)

A hospital envelope surprise.

I came home to find a letter from the hospital that I visited back in May. I thought at first it was asking for a donation, but when I opened it the letter was a survey asking about my experience! There were about fifty or sixty questions in total and a spot to relay extra information about the visit to the ER, all of which I obligingly filled out. I was very happy to fill it out for several reasons:

1. It's so very rare that we, the patients, get to give our feedback.

2. I was glad I got to speak to more than just wait times. These were some of the questions I that I found more thoughtful: "Did the doctors/nurses talk in front of you as if you weren't there?" "If you had any anxieties or fears about your condition or treatment, did a doctor/nurse discuss them with you?" "Did you have enough say about your care?" "Did someone in the Emergency Department help get your messages to family or friends?" I like these, because it shows that there is an understanding that hospital experiences are not just about expediency, but also about comunication and respecting patients feelings during what can be very stressful times.

3. In the space provided I was able to tell them that, while I found most nurses be attentive, kind and knowledgeable and my doctor was really superb... there was still that one nurse to whom I relayed the fact that my blood sugars were low and it took her a whole 10-15 minutes to bring me a rather small glass of juice... and the only reason she gave it to me at all was because they were taking me to x-ray and I passed her in the hall- she'd left my juice on the counter at the nursing station. (For some reason I failed to mention this in my original post- somehow I just forgot about it!)

Anyway, the moral of the story is that I wish these questionnaires were a more regular thing. I've had a number of visits to ER's (though curiously, never for the diabeetus... except for diagnosis...) and this is the first time ever I've received anything like this. Who knows if they actually listen to what is written, but I'd like to think that if they took the time and money to send out the survey in the first place, they too take their patient's needs and wishes to heart.

Questions to an X-Ray Technician...

So I moved my rheumatology appointment up two weeks, because I've had really bad back pain lately. Usually it's mostly in my hip joints and lower back, but the stiffness was the the point that it was throughout my entire spine in the morning, culminating in me not being able to touch my toes or move my head around to look past my shoulder. I went in today and had about a dozen x-rays taken of my back and hips. The technician was so polite. He kept saying sorry every time he had to adjust my hips for the image. Eventually I told him it was okay, he didn't need to apologize, I'd had enough x-rays done over time I knew the drill and it was okay.

And then, as I was lying on my back looking at the muted orange pot-lights that seem to line all of these diagnostic rooms, I thought "I guess this is not everyone else reality." Which is kind of dumb that it's somehow taken me this long to realize. I think I know the x-ray set up in every hospital in central Toronto. I know which hospitals have the nicest staff at their ER's. I can tell you how long you'll likely be in an ER depending on the location and the time of day. And when I think about moving, I think about proximity to hospitals and doctors. Anyway, that's just a tangent... Back to the x-rays: I was lying on my back looking at the lights and for some reason being in a clean gown (no matter how fugly it is) and lying on clean linen and being gently proded around I suddenly thought, "I feel like a baby." And then I almost started to cry... But then I thought, "OMG, Virtue, don't you dare start crying here" and tried to imagine the uncomfortable converstation that would ensue with the very polite technician.

In the end, I got up and asked my standard x-ray technician question: Do you look at people differently after being able to see their insides all day? (It's part of this stupid experiment I have going. There's no real purpose to it, I think I figure if diabetes changes how I look at all things food related, then maybe taking x-rays does the same? I also wonder how people get their heads around seeing someone's bones, but then having them as a real person in front of them. It just seems weird to me. Don't know...)

This round's technician's response was a little different, because I think I was kind of nervous after nearly breakind down in the room... I think he thought I asked if all x-rays looked the same regardless of person? At any rate, his response (and I'm paraphrasing, of course, so take that into account) was that people pretty much look the same in x-rays, unless there is obvious trauma; just some people are bigger and some people are smaller.

I just realized, as writing this, I think he was actually a really good technician. I don't think I would have felt like I could feel emotional and present about things if I wasn't comfortable/feeling safe with my surroundings.

(I covertly took this picture for your viewing pleasure!
Apparently it is me/patient carrying an old TV with my bones in it!)

Sometimes I feel like I'm on a different planet...

I was in a coffee shop reading for school. I was reading an article about patients writing illness narratives. It was arguing that such stories can be seen as a political act against a biomedical model that sees patient merely as disease and not as an whole being. I have issues with some of what the authors argue. I don't really see one nice neat narrative in illness. It's more like different stories of good days and bad days and, while, there might be a beginning, for people with chronic illness there is no end, or at least not in life.

When I got toward the end of paper I started to tear up... which was kind of weird, because I still wasn't into the article. By the end it argues that nurses are in a position to dialogue with patients and create a sort of co-constructed narrative of illness that suits both the practictioner and the patient. Fair enough, I guess, but I just didn't find it incredibly mindblowing. So, I couldn't really figure out why I was suddenly all choked up...

And then I realized that this was playing in the background:

How did we stop listening and seeing one another to the point that we have to write hundreds, if not thousands or millions of pages about love and care? And only to be one-upped by a simple love song playing in the background of a coffee shop?

Quite very simply: I just need you to stand with me-- not ask me inane questions about my medical devices or condition for your own purpose or judge me or tell me I'm not trying hard enough... Just stand by me.

Coincidentally, I came home to find this on my facebook feed:

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.

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.

Steroids + Diabetes = Bad Effing Idea

Every spring until end of summer I have to start using steroid inhalers because of allergies. If I don't use them I can't breath. But the interaction they have with my blood sugars for the first little while is aweful. The initial side-effects are gross too...



I feel sooo uncomfortable in my own skin, I wish I could just detach myself from my body. My lungs are burning and I feel like I have sand in my eyes/am parched beyond belief. :_(

I changed my mind...

So, I was going to write this blog post about how I've been sick since the start of last September. I was going to talk about the crippling fatigue and joint pain. I was going to describe how depressing it was trying to get to class on time in the morning, but failing miserably because my hands moved more like lobster claws than extremities with digits capable of fine motor skills. I was going to tell you how I've had a thousand blood tests, x-rays and ultrasounds done and all have come back fine. That my family doctor has written me off as 'merely depressed' (ironic considering the amount of anti-depressants running through my system) and given up trying to diagnose anything. I was going to tell you that as a last resort I've turned to my endocrinologist for answers and that today she gave my more results with no answers.

I would have said that every time I have a battery of tests and wait for the results it feels like looking forward to finding out I'm diabetic all over again... and that, without fail, every single time I've gotten butterflies in my stomach, a lump in my throat and may even resort to crying. "I've already gone through this," I think "why do I have to do it again?"

But then, I came home and there waiting was a post by a Twitter friend @rpederse. It said:

As Twitter friend Virtue B. suggested in tweeted comments on my post, focus on the daily stuff makes recovery from a mistake much easier.

And, as I read the post, I thought maybe I should take heed my own words and forget the big picture for a bit. I've been doing much better lately; mostly what is hurting now is the idea that my symptoms will all come barrelling back... But worrying about what might be can be debilitating in its own right. This is a lesson I remember learning through diabetes and all its potential complications-- I guess I just needed the reminder that it is easily required by many of life's other quandaries.

Lions and Tigers and Bears?

If every story has a backstory, this is mine...

Grade 5
One of my schoolmates talked to the class about her sister's diabetes and the day-to-day routine since her diagnosis. She went through the symptoms: thirst, frequent urination, dry skin, fatigue, weightloss... I remember thinking "I have all of those... except one- weightloss." And with that, the posibility fled from my mind.

Grade 8
Preparing and presenting a speech was required every year of middle school. For some reason I chose to speak about the discovery of insulin.

Grade 10
Fall: Thisty. Really, really thirsty. Going to the bathroom a lot. Skin parched...

I thought I had a urinary tract infection and booked an appointment... Losing one pound, two pounds, five in a week...

It was a new doctor. She did a full physical. I remember handing a urine sample to the secretary at the front desk. She said, "We'll call you if anything is wrong, but I'm sure it will all be good." "I am sure it won't be," I thought as I left the office.

Winter break: Falling asleep while sitting watching TV at 6:30pm... The only thing I remember asking for Christmas was a belt, so my pants would stop feeling like they were falling off...

The new year: The doctor's office did call and asked my dad to take me to the lab for a few blood tests. Nobody told me why. Nobody needed to tell me why. I knew what it meant when they were testing first thing in the morning and then two hours after eating...

January 15th, 1994: I was eating dinner with my dad, my grandparents and my sister. I remember roast beef. The doctor phoned and told my dad that I needed to come back to the office. They wouldn't tell him why. He pressured them for answers. They still wouldn't tell him why. He started yelling. They told him nothing.

My stomach turned. I stared at the dinner on my plate, before finally just leaving the table.

At some point my dad phoned my previous physician. He asked them to obtain the test results...

January 16th, 1994: I went to school, but was pulled out of class and summoned to the office. My dad picked me up. The only thing I remember about this was sitting in the car driving to the hospital and thinking, "I promise to be a better person, if this just ends up going away."

January 17th, 1994: Holly- middle-aged, brown-hair, lots of make-up and strong perfume- the diabetes nurse/educator woke me up at 6 am. She and several others stood around as they asked me to step onto a scale.

NOT. A. MORNING-PERSON.

Being half asleep, I fell off several times before attempting to steady myself by spreading my arms out like airplane wings. It was a ridiculous scene; even half asleep I realized this and started laughing. I recall the event as highly entertaining for me; really uncomfortable for eveyone else.

The next seven days: I stayed in the hospital until the 24th.

Things to remember:

• Read The Catcher in the Rye.
• My mom sent me flowers. Part of the arrangement was gladiolas.
• My friends came to visit me, which was nice. One of them saw the bouquet and said, "Oh, I thought gladiolas were for funerals..." which was not nice.
• I made a weird looking basket.
• I learned to hate the smell of Bacti-Stat soap.
  
• Lots people in my family came to visit; my dad stopped by every night. This was the best part of my stay.
  
• The daytime when no-one was there was boring. I remember staring out the window. The curtains were ugly. I think they were orange.
  
• I made friends with one of the student nurses. She'd hide out in my room and we'd chat. It was from her I learned my sideshow status- I was the first type 1 diabetic any of the nursing staff had ever met in the flesh.
• Every hospital professional I met was eager to mention the promise of a cure in no more than 5 years.
  
• Had a heparin lock shoved into my arm without any warning. The nurse just grabbed my arm and, without any explaination, pushed the apparatus underneath the skin of my forearm. It was rather horrific.
• I got a day pass one day. I went to the mall with my dad. I bought some shirts. The sales lady kept staring at the heparin lock in my arm. I remember my dad saying that he couldn't help but think of me as a porcelain doll now.
  
• The staff made my dad and my sister learn how to give me injections. The idea behind this was that in the event that I was sick and unable to give myself the shot, either of them could step in. This always confused me, because I always figured that if I was so sick as to be incapacitated what I'd really like was to be spared being jabbed and taken to the hospital. When I think back to it, though, I find it especially unfair to my sister- she is terrified of needles and was was practically in tears when it was her turn to poke me. That's when I decided I really didn't like Holly and her perfume.
  
• Discovered insulin smells like Elastoplast band-aids.
  
• Annoying nurse on the night shift routinely woke me in the middle of the night to quiz me about the symptoms of hypoglycemia... I still wish I could show up at her bedside at 4 am to wake her up to quiz her about the symptoms of diabetes.
• Asked my endocrinologist if my life expectancy would be affected. She told me, without any hesitation, that diabetics generally live 1/3 less than the average population. It felt like a sucker punch... especially at 15.

Getting sprung: a day or two after leaving the hospital I went to see a movie with friends. It was Philadelphia, which in retrospect was not the best choice. Toward the end of the film, when Tom Hanks' character dies there is a scene of his wake. Playing on the television is a home movie from his childhood. I remember crying and not being able to stop. I couldn't explain why I was crying at the time. But, now I think I know why... and funny enough, that's actually the only time in my entire life that I cried about my diabetes.

Butterfly Needles + Snow.

I spent the other night in the hospital. I spiked a very nasty fever and no matter how much insulin I pumped into my system I couldn't get my blood sugars below 10 mmol/L. The only time this ever happens is when I have some sort of infection in my lungs. They'd been burning when I breath, but I didn't have the cough that usually goes along with an infection. I hate ER's. I hate the waiting. I hate the emotionally sterile environment. I hate the bad television in the waiting rooms. I hate the sitting for hours feeling like shit.

The nurse used a butterfly needle to draw the blood from my arm. I'd never had one used before. It was fine, until she took it out and my arm wouldn't stop bleeding. "Just press on it," she said. I was and it was bleeding through my fingers and down my arm. "Press on it and lift it up in the air," she modified. I did and it... eventually stopped.

They didn't figure where the fever came from and didn't have much to say about my uncooperative blood sugars. I left the hospital around 4:30 am. The streetcar down College was slow in coming and I couldn't find a cab. It was cold out; when I had left the house early I was so warm I didn't bother to wear a sweater or a winter coat. I couldn't stand waiting for the streetcar and eventually started walking in the direction of my house. I pased by the 7/11 and there was a young guy working behind the counter- I guess this hour is normal for him.

It started to snow and I thought of the time when I was working as a nanny and one of the kids caught her first glimps of snow. She was so excited. "If it's snowing in the backyard, I wonder if it is snowing in the frontyard too," I said. We ran to the front to see. Sure enough it was and before I could turn around to go back to the kitcen she had her rainboots on and was sloshing around in the backyard. It was like magic. I missed that moment. I miss feeling well to the point that I could just carelessly hang out with friends and enjoy the snow.