Archive of ‘bloodtest’ category


It feels so good to be home! We took a little ‘trip’ to a rather fancy new place in town, and boy does it feel good to be back in my own bed. Where it is quiet. And I can be alone and rest. 😛

I wonder if there is a ‘’, because the new wards at RJH in Victoria are super super nice. The care would have been top quality if I wasn’t one of those Lyme Lepers. Rats! Sometimes it sucks to be the crazy patient who is mysteriously ill. Oh wait, just kidding, it sucks ALL the time, but especially when you are trapped in a hospital and have to do everything they say.

Something has been not quite right in my belly for awhile. I’ve had the strangest feeling of wild hunger followed by periods where I feel ‘full’ and don’t want anything and couldn’t even look at a bowl of my favorite orange soup (not made from oranges guys, but orange veggies! Jeez!!). The pain started a little way into last week. It was an urgent and rough pain, a squeezing-compressing-swollen-pushing-pressing-tender pain, the kind that makes you feel as through you’d be fine parting with your internal organs just so long as that would make it go away. I usually can breathe and meditate myself out of any kind of pain, but this was beyond me, which I feel is saying something. I had zero tolerance for the pain, and basically laid around all day, complaining (which despite how long I’ve been sick for and the severity of illness, I actually don’t do that much of. this is confirmed by my family :P). The pain built. I had Mum phone doctors, which usually isn’t something that we do, unless we can’t figure out why or how to stop it. I’m on some strong oral meds, which we figured was just causing stomach pain. I kept saying it was my stomach hurting, partly because all those squishy bits in my tummy are all so close together, and usually it is my stomach that is the culprit.

The next day I knew something was seriously wrong, and wanted very much to go to the hospital. I wouldn’t have minded if they’d taken me by ambulance, which usually isn’t an idea I’m down with, even in life threatening conditions. I wasn’t quite ready to voice this idea out loud. It hurt so much to sit up or move, so I laid still, trying to find a position that was more comfy. I should have been a little suspicious of the fact that all positions hurt, and nothing made the pain any better. And that it kept getting worse. I didn’t eat all that day. I just couldn’t bear the thought of eating. No pills either. By early the next morning, the pain reached such a pitch that I was desperate to get to the ER. We left very early in the morning, which for me is unheard of, even for the most important things. I hadn’t slept all night or day. The pain was all I could focus on. I felt like I was going crazy with it nagging at my insides.

Thank goodness hardly anyone else was crazy enough to get going to the hospital while it was still dark outside, because we got in and were seen by a physician very quickly. Blood work confirmed acute pancreatitis, or the inflammation of the pancreas. My amylase and lipase (enzymes secreted by the pancreas) levels were extremely high. By this time I was utterly ruled by my pain, an animal in distress, and the only thing I had the patience to pay attention to was “when were they going to bring in the painkillers”? They did. A sub-q injection of the same drug and at the same dosage as I was getting orally. I was already over-medicated by their standards, so goodness, we wouldn’t want her getting to comfortable, right? Sigh.

The treatment for pancreatitis is basic. No food or drink by mouth. Period. For a couple of days. And see if things calm down. Darn. I had to stay at the hospital until I was well again, which of course meant no sleep on top of no calories. Bad combo. I had a room to myself in the ER with doors on it, which was amazing and rare. We we waiting for a bed in a ward to open up where I could stay, but in the meantime I could get a whole bunch of audio-book listening done, and relax. No knitting, so you know I was pretty sick and uncomfy.

I am already a little bit manic about my water. If my bottle gets empty, or it is out of reach, I go a little bit crazy and am very demanding when it comes to water. I feel crazed when I can’t have water, like it’s my drug of choice and I just can’t get enough of a fix. I was getting hysterical about not having any water. Which makes me even more unusal than they already thought…lucky me.

After a night in ER, I spent 2 days in the hospital, sitting very still, being poked and scanned ever now and again. Luckily, I wasn’t allowed to eat or drink anything the first few days, so I didn’t have to taste RJH’s legendarily disgusting food. Yay! Although when I was allowed to eat, it was just white rice and sad faded green beans for me. Seriously…what hope is there for a medical system which feeds crappy processed foods to people who come to them to get well? But I digress…

I was too sick to knit. This has never happened! Moving even a little bit hurt my pancreas, and sent a wave of pain through my whole core. I get pretty exhausted and have trouble moving if my blood sugar drops, which it does if I don’t eat every few hours. So the nurses were all surprised with my extremely low blood sugar levels. I probably seemed even crazier when I refused the ‘sugar water’ IV’s, because that kind of sugar just makes me feel even worse and more lethargic. The ‘pasties’ of glucose to boost you sugar taste really awful; powdery sweetness, but not in a good way like sweet-tarts, although they are colored, and just as ‘cold’ on the tongue as those candies. I did talk them into just giving me a spoonful of honey when my blood-pressure dropped subsequently which was much more enjoyable :). I’m exhausted from the whole ordeal and am resting and eating (sparingly) a pancreas-friendly diet of carbs. Yum. Apparently veggies are kind of hard to eat at this point, which is breaking my little vegan heart. But don’t worry leafy greens, I’ll be back soon! ~

The Gatekeepers Den

My second appointment with Dr. Ghesquiere went just as oddly as the previous one. This time, I was in to talk about my blood infection (enterobater cloacae), which I was assured would be handled promptly and effectively. Of course this wasn’t much of a comfort, after I had been dismissed as ‘not having Lyme disease’ in a brief encounter with both partners of the Infectious Disease medical practice, the only one on the Island. It was deemed prudent to have my blood cultures retested, to make sure I was bacteria-free, so I could stop taking the Bactrim DS.

Dr. G reviewed my bloodwork, and was confused by my severe anemia and off counts. The obvious answer, that the tick-borne bacterium in my body was feeding off these cells was a little too obvious. Captain Confusion and Disinformation is hard at work.

I am shocked that doctors find it so useful to repeat very definitive tests over and over again, looking for things that are only explain a few of my symptoms (at best). My blood work, testing for Lupus, rheumatoid factor, vasculitus, connective tissue disorders, protein production (rule out cancer, bone marrow disorder, over production of proteins in immune system), which all came back negative, yet again. I am not sure whether this is the second to fourth time I have had these tests done. These are the popular string that doctors usually cling to when they see me. Its the old ‘oh-anything-but-Lyme’ strategy. If you test a patient for enough things, you could find something wrong (which is what they hope)…something to explain all of my straaaannngeee symptoms.

Perhaps it is just a perception, but the doctor seemed to be working very slowly. We only have about half an hour, so bothering to slowly explain all the things I don’t have, or asking the same questions again does not make sense to me. I get the impression he is stalling, trying to get through as little as possible with us in the short time we have, or perhaps I only think this because I know it to be true. I am detecting a pattern with this sort of doctor.

Dr. G’s wording throws us all, latching on to an expression and holding on for dear life. In our last appointment, the catch phrase du jour was, ‘I am obliged to tell you…’. Today, I am asked, directly, because I am now an adult, whether I would be willing to see an adult rheumatologist at the Arthritis Soceity (even though my rheumatoid factor is negative) and a physiatrist. He said if he was sitting in my shoes, these would be the places he would want to be, the doctors he would want to see. How infuriating, that the doctor I could use most of all is sitting in front of my, and smiling benignly and lying that any other doctor would, essentially, help. Except not his kind of medicine. I am feeling too sick to digest this odd appointment, so I shall put off more reflection until I can think without my brain throbbing

“What Now?”

I seem to be one of those patients who doctors give the “What now?” face to a lot. I feel like a burden to their ordered lives, with so many complaints and problems that they take up much more than the few lines given to express the  “reason for coming in”. My prescriptions list flows into the margins.

I have been feeling extra specially awful for nearly a fortnight. I had about 6 of the uber cold shaking episodes, which are incredibly painful and exhausting. Shaking is our bodies natural way of warming ourselves up, and is impossible to fight, just like you can’t hold your breath and suffocate yourself. My Lyme-aware doctor thinks that it could be a reaction from a glucose intolerance, which apparently affects many women with Lyme disease. It is not cool. A few days ago I took a 2 hour glucose test, which involves drinking a deathly sweet drink of 75 grams of glucose (ooh yes. I don’t know if I have ever drunk that much sugar in one day ever). Then, you sit still for 2 hours and don’t eat or drink (minimally…can’t go two hour without a drink…so dehydrated always!) and then they draw another phial of blood. There was a lot of blood drawn that day…3 needles in all. I had to have a blood culture done, which included 4 culture bottles (whoa!) taken from both of my arms. I was not down with the idea at all but it was important. Apparently, I have some kind of gram-negative bacteria in my blood. The walk-in doctor I went to see was of the opinion that that was that, and the reason for my chills and tiredness, and that 2 weeks of double-strength Bactrim would magically cure my symptoms, or at the very least clear up the blood infection. The results were a bit confusing…the lab made a mistake on the preliminary report, but the wording is odd. It sounds as though they are not convinced what is ailing me.

I can’t find a family doctor…none will accept me, or my mother for that matter. It is like stepping into a fantasy land; It’s the McCarthy period and we are blacklisted for suspected Lyme-ist ties; Big Brother is watching out for me though, thank goodness. I don’t know how they can even legally turn me down. But instead, I have to wait over an hour and a half in a walk-in doctors seating area for my 10 minutes with the white coated doctors who wear the stethoscope like a tie. I hope that when I become a doctor that I will start by listening to the patients, I mean really listening, and diagnose the whole problem. Now, if you go to your family doctor, only one issue can be addressed at a time, which is an absurd system, because many disease have multiple, complicated symptoms, and how could a doctor possibly fully comprehend which specialist to send you to if he only discusses one of your complaints, briefly? It is absurd!

It is disgusting how the medical establishment is repeatedly failing me in all areas. How could a previously healthy 15-year-old female slip through the cracks without even a backwards glace from the attending physician? Even when that patient was patiently fighting for her life, I still had to fight for their time and ear. I only wish I could get appointments with all the physicians who tried to pass me off to another useless doctor, and explain to them the truth, to shake them with its devastating power. To kindly describe to them in a condescending tone that I have learned by example so well, that there is an epidemic going on, which for some reason hasn’t passed through their gated walls and foot thick glass of the ivory tower where they reside, somewhere high up in the clouds, where the goings on of a creature as small as a tick are insignificant. And anyways, very few ticks apply for passports, so they can’t be coming into the country!?

To surgically open their eyes seems the next logical step.


Amy, Rachel and I went of for coffee (well, tea really) the other day. It was so much fun! We went to Nata’s Cafe in the rip-roaring busy town of Peterborough (lol) and we had pie and cake slices with our chai latees (for them) and a smoothie for me. It was yummy. And we just talked and hung out. Rachel’s real nice…I met her when I was last here…like 10 years ago! Very cool. Hope we can do that again!

Today I had blood tests (ow, no fun!) and then we went out to a Noodle Box-esque place and I had pad thai and a summer roll and it was pretty good! I had to fast for the blood work so it was a much appreciated meal. We stopped at the health food store (oh Amy’s fav place haaa) and looked at all the fun (and super-healthy) stuff, and got some essentials such as chocolate, cheese and ice cream! Very fun. Went to the library too and picked up some movies and CD’s.
Its so sunny out, and like 21 C (70 F) degrees out! Lovely. But a little windy!

The Last Day of March

Today was okay I guess. We went to the library in “Woodbridge”, where ever that is, and checked out an insane amount of books, movies, and a probably 20+ CD’s of jazz mostly! I am currently adding them to my growing library as we speak! I lost quite a few songs when I transfered them to our external hard drive (I probably clicked no versus yes or something incredibly annoying and basic like that). Today was also blood draw day (oh my favorite!!), but honestly, I’m kinda used to the whole sticking-sharp-objects-into-my-arm-to-draw-out-my-life-sustaining-blood thing. I only have to have blood drawn every two weeks, so I am actually lucky. I still feel like I’m going to black out and such other wondrous things, and still envision myself attacking the needle-baring nurse (but of course its just an idle fantasy! I’ve never attacked anyone medical!). 

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