Archive of ‘hospital’ category

I love you, Dad.

Life begins with a promise. It is promised, when you are born, that one day you will die. You might spend 20 minutes on Earth, or revolve around the sun 60 years, or tomorrow, or 3 weeks from now. I guess in order to keep living, we pretend this isn’t true, like when you’re rereading a great book and try not to think about the ending you know is coming, so it won’t spoil the journey. There feels like there is always another tomorrow, and one after that, and the one after that…on and on unto the end of your imagination.

I became aware I was a mortal at a very young age. I was diagnosed with a genetic condition which predisposes me to tumors when I was 3 (that’s when I first remember it being explained to me). I became aware that tomorrow wasn’t promised. That there was only one promise the planet had yet to keep; that I would die. That we would all die. The first promise, my birth, had been fulfilled, and every moment was a gift. I lived every day after that with the intention of filling every second of existence with an infinite infinity of moments, memories, love.

It was easy. It was impossible. I failed. I succeed. I tried, though, and that’s the most important part. I try.

I tell my parents I love them, and hug and kiss them every night. I say goodnight, as though this might be the end of the Earth’s promise. That the tomorrow which is just dreams away might not be waiting for me. That tomorrow might move on without one of us. I’ve never told them that when I said “goodnight” and “je t’aime”, I was really whispering in my heart “goodbye”. I never wished to say a last goodbye.

So I am not wishing my father goodnight. Or goodbye. I am whispering to him with every breath we breathe together in our existence that I love him. And those are the words that have always meant everything and encompassed all.

I can’t even bring myself to type the word. That word. The word that is so final, so absolute, that once I type it, I won’t be able to see from the tears that roll down my chin. I’m not ready for a salt-stained keyboard. So I won’t. My father is taking a journey, a journey to a somewhere, a somewhere neither of us understands. He has stage 4 lymphoma. 2 weeks ago he was flummoxing me at Scrabble with his funny made-up words, eating dinner together, teasing me about how much onions I put in everything, walking, buying groceries, reading, snuggling with me. He was doing the ordinary things that make every moment extraordinary, and make up our infinity. He also went profoundly deaf, a side effect of the chemo. So we were also playing like the worst, most hysterical version of “Telephone” the planet has ever seen. So much was lost in translation, in deafness, but the love was not. Last week, we think he blacked out or his heart stopped, causing him to have a car crash (no one was hurt. not even him.). He went to ER, where he seemed alright, if a little confused and “odd”. But something as “off”. They admitted him, and he went downhill so quickly. He got a pacemaker, to combat the effects of the chemo, which were finally rearing their ugly head. After the surgery, he was very tired. A kind of tired which frightened me. Dad would wake up for a few minutes, maybe eat a little something, smile at me or say a little something, and then sleep again. Today he did that less. He is slowly walking away from me and I cannot catch up.

I’ve spent the past few days bawling at inopportune times, and wetting my dad’s pillow with tears (sorry-not-sorry). I need to make these moments even more infinitely infinite than they always have been. Because I need to store them in my heart.

I do not know how much time he has left with us. I never have. It is an unknowable thing, and we are blessed with this ignorance. Because the knowing would break us. It is breaking me. Cancer is terrifying because it makes you see the final promise looming ever-nearer.

He once told me he never imagined having children, but that he couldn’t imagine his life without me. <3

There is never enough time to be with the ones you love. A thousand lifetimes and the last “I love you’s” would still break my soul. I am so grateful for being a part of my Dad’s incredible journey on Earth.

And feel deep gratitude and love for all possible moments we’ve shared together, past, present and future <3.


Fresh Beginning

And with these words, I break my blogging hiatus.

There, that wasn’t so hard. But still, I can’t really explain why I haven’t been writing. I suppose, like I’ve always said, I handle most medical things really well, unless then involve my abdomen. And this has been the year when all everything has decided to sporadically go wrong in my tummy. It began with pancreatitis, and I’m really hoping it is ending with Bell’s Palsy of the Gut aka Frozen Gut Syndrome aka OUCH.

This was what I wanted to happen:
Well, it’s been 2 weeks since I’ve been out of hospital, and all the pain in my pancreas has vanished! It’s amazing what a little starvation will do (that’s how you treat pancreatitis). The people at the hospital were a little frustrating, because they kept hurting me more by trying to ‘help’ me, despite warnings of my high level of pain, latex allergy and chemical sensitivities. I guess I’m officially all better now…yay! I think I’m going to bake some gluten free brownies to celebrate. Ta ta for now!”

The pancreatitis problem was solved by 3 days of no food and water (seriously. nothing.). I’m going to be honest; pancreatitis was excruciating, a kind of physical pain that is difficult to block out, although I experience the same intensity of pain daily. Essentially, my pain load doubled over the course of a few days, which wasn’t fun. It hurts to bend, stretch, move, sit up, drink, hiccup, cough, sneeze (especially painful). Please take care of your pancreas, which is located right beneath your belly button. For the 2 days before we went to ER, it was incredibly painful and I basically stayed in bed all day, but figured it was ‘just a Lyme thing’, even though something in my gut (no pun intended) told me it was otherwise. My advice?: don’t wait if you think there is a slight chance that something could be seriously wrong. It could be a Lyme thing, and something seriously wrong. The ER doctors will probably goggle at your prescription meds and raise their eyebrows at your diagnosis, but medical intervention is worth it. Loosing your pancreas is not worth skipping the 8 hour ER wait (and on the bright side, they will get you in a bed right away if you have pancreatitis. fake yay!).

Then I had a few follow up appointments, and now have to be careful that I don’t get it again because it can be a chronic condition. I really want to keep all my squishy bits, thank you very much! I still have all my organs, fyi. I was seriously weakened by the intense physical pain/trauma of my inflamed pancreas, and the dehydration and lack of food while in the hospital. I felt lousy though, and I never felt 100% after the pancreatitis. I guess I thought something else was wrong, in the back of my mind, but what I voiced aloud was the idea that I was tired and recovering. I have not been on IV antibiotics since then, because there is a good chance the IV med I was on caused the pancreatitis, and I don’t want to go through that again!!!

It was several months later when I began to develop severe abdominal pain. Different place, though, more to the side, and higher up. So it was a trip to ER for me, and after hours of literally crying with the pain – I’m usually a pretty tough cookie when it comes to pain, even the pancreatitis, but this was intense. It felt like there was a rock stuck inside my body; scraping-poking-piercing intensely. After hours, I finally asked some other nurse if I could lie down in one of the many empty beds, because for some reason my nurse judged I didn’t need one of the beds that has been empty for the last 5 hours. Nothing visible in scans, but all in the same casual breath, the doctor informed me I might have passed a kidney stone, and that I had a impressively impacted colon. Those sort of adjectives coming out of a doctors mouth worry me. His advice was take laxatives, many kinds, for a month, and then have another x-ray. Whoopee.

It was a very bizarre month. Laxatives makes it feel like you are scraping nails down your intestine walls. I was not hungry at all. I felt full, in fact. So full that I was practically in tears at the thought of a bite of toast, a sip of water. And still, the painful urination was always there, but would intensify so sharply and suddenly, and then last for hours, lessening gradually. I’m not sure whether or not I was born with medical intuition, or if I have honed these skills during my illness, but my mum and I both get clear ideas of what is going on. I knew, without question, I was experiencing kidney stone ‘showers’, many tiny stones, that were being missed with all the dipstick tests. I knew they would be missed, each time I patiently gave a sample, because the pain was not at its peak. High pain = passing stones, wouldn’t you think?

Laxatives by the handful. And nothing worked. I wasn’t constipated though, that’s the weird part. My stomach was bloated and hard and painful, but I was still able to go to the bathroom, and the laxatives weren’t doing whatever they were supposed to be doing. Months went by, and I’d keep going back for x-rays, and yup, my colon was still impacted. It was around this time that my urinary pain began to fade away. I tried to explain to each doctor I met the unsettling sensation I had that my abdomen had ‘turned off’, that it wasn’t working, that food was just sitting in my stomach all day undigested. I am very in tune with my body, and can feel the gentle buzz of peristalsis (muscle contractions which move food) in my belly. It’s a sense of motion or activity, of gentle movement, and energy in my abdomen. All of that was absent, my tummy had frozen, and I couldn’t convey the importance of this to my physicians.

Eventually, we saw a doctor at the hospital, the guy in-between your GP and being admitted to hospital…a quick-solving-patch-em-together-and-get-them-out-the-door sort of clinic. He tried to patiently explain that somehow, my impacted colon and painful urination were one and the same problem. I’m not a doctor, but I’m pretty sure those are completely separate body systems, with their own tubes and pathways. And the pain of each was very different and distinguishable, as I kept reiterating. Kidney stones are a very specific pain, a pain which wraps around your body like a tight belt, a squeezing, a sharp ‘rock like’ grating and a pain in your kidneys and ureter (the tubing that runs from your kidneys to your bladder), a pressure. This was very different from the dull ache and pressing pain in my abdomen generally.

At this point, my colon was so impacted, that you could see bulges visibly under the skin of my abdomen. Pressing on my abdomen, even lightly, you could feel hard lumps. It was disgusting. And painful. Painful to move, breathe, twist, stand, walk, lie down. I didn’t want to eat, I wasn’t hungry, and still I was being pumped full of laxatives. Nothing was helping. My colon was impacted for months, and by the end of my laxative regime, it was still only half solved. I was fed up with laxatives though, because they were just not working.

So about is about 6 months after my pancreatitis, and on-going colon problems, I began to experience more intense upper abdominal pain, an area previously void of pain. Several months later we figured out I probably have an ulcer. The medication for ulcers helped within a day, and now it hardly bothers me.

I feel like I could write a “12 Months of Abdominal Pictures” song.
In the first month of pancreatitis, my doctors ordered me: 1 ultrasound and a CT of my tummy;
In the second month of colon troubles, my doctors ordered me: 2 X-rays, and we waited for another ultrasound;
In the third month of colon and kidney pain, my doctor ordered me: 2 types of laxatives, 2 more X-rays, and we were still waiting for another ultrasound….
In the sixth month of colon and kidney pain, we finally got in to see, my geneticist, who order an MRI.
In the 9th month of colon and kidney pain, we finally had, my Abdominal MRI, … 3 types of laxatives, 2 X-rays, and an ultrasound for me.

Okay okay, you get the idea. I was zapped a lot, and developed favorite X-Ray clinics. Blah blah blah.

A few weeks ago, we finally got to see Dr. Marra in Seattle, my Naturopathic Lyme Doctors who’s saved my butt more times than I could count. Bell’s Palsy of the Abdomen is very common with Bartonella, and involves just what I described: part of all of the digestive system freezing, stopping moving, stopping digesting. It apparently has to do with a nerve running to your tummy. If you want to read more about it, read Dr. Virginia Sherr’s article about it. I started taking magnesium oxide, which in just a few weeks has helped immensely. No more sort-of constipation, less abdominal pain. My abdomen isn’t puffy! A holiday miracle :D. Yummy pies and cakes here I come. I want to talk more about all the awesome things I’ve been doing, but that should be a separate positive post.

Happy New Year to you of health, peace and joy!


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! ~

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