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Archive of ‘pain’ category

cancer, dad, doctors, ER, family, hospital, illness, memory, my personal angels, pain, painful days, sick | 5 Comments

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.

 

illness, Jews & Christians, Latin, pain, pills, Roman, wheelchair | 0 comment

Ancient Brain

I’ve never let the pain get in my way. Or the wheels. (Sometimes I feel like a spider, a girl with 2 arms, 2 legs, and 4 wheels equals 8 limbs. Have you seen Monsters Inc? I ‘roll’ by my self like freakin’ Mr. Waternoose.) I do amazing things, and they’re almost bright enough to hide the pain of living, even from me. 


I have been so busy, I actually don’t have time to be sick. Illness is a major inconvenience! Who needs pill breaks and resting and insomnia? I don’t let anything stand between me and living fully, especially not being sick, but it requires a re-evaluation of life, changing the definition to suit your needs. Exchange the cloak of pain for a smile, and put the tension in your back pocket for a time. But like every magic tricks or slight of hand, the reality behind the make-believe can’t be hidden from the magician. 

I can’t figure out the best way to list all the amazing things I’ve been up to without sounding really conceited and irritating. And I can’t figure out a way of talking about the bone pain without feeling like I’m hosting a whiney pity party. Which is why I am writing all this bizarre preamble. I guess. I don’t know. Sometime my fingers take my brain for a walk.

Um…I actually started writing this post because I wanted to talk about the Greek and Roman studies class I was taking at UVIC. See….you can never trust your fingers, because they take you places that your terribly logcial mind would not. Without further ado…I’m auditing a class at UVIC (my 3rd so far!), called ‘Jews and Christians’, which is every bit as rich in primary sources and apocryphal books of the bible(s) as I was hoping! I’ve also been studying latin for the past 1.5 years, and it’s marvellous! I only wish I’d learned it before tackling French and Spanish, and Biology (and music! and literature!), because so many of these words and terms have latin roots. Although the meaning of words have changed sometime during their multi-millennia trek from Latin to English, knowing the root of words help to understand their meaning. Can’t wait to start reading Juvenal’s satires & songs of Horace, but I’m definitely not there yet. 

The teacher of both these classes has the sort of passion for his subject that I was starting to believe was impossible with adults ;). We met Dr. Rowe at a thrift store and started chatting in line about Lyme disease. I learned that he was a professor of Greek and Roman studies at UVIC, and when he asked if I wanted to audit some classes, I was so surprised, and excited. My love of Roman and Greek mythology started at an early age, when a family friend & librarian gave me children’s version of Greek Mythology, ‘In the Morning of the World’. When I grew a bit taller and could reach the top shelves of the library, I found Robert Graves’ Greek Mythology tomes, which are a beautiful rendering of a culture’s complicated myths. I’d wanted to learn more about Greek & Roman philosophy, history, and religion at university, but I never dreamed I’d be able to handle the coursework, or keep up with note taking, or even make it classes. 

Sometimes you can surprise yourself. 

I type (almost) as quickly as someone can speak and am learning to tolerate my robot ‘Bruce’ reading and butchering ancient sources (“Kay-zar” is one of my favorites, for Caesar. Oh Bruce-y.) 

For whatever reason, I can ‘learn’ Latin in the way I just can’t learn any other subject, with the exceptions of Music and Spanish (a different part of my brain? who know!? who cares!!). I still struggle with severe short-term memory impairment, which makes it fun when I know no ones name, or if they know me. So my secret is you treat everyone with kinds and with an open heart, and figure out from their facial cues whether or not they know you. It’s hard for me to think of answers abstractly to Latin grammar questions (I hate & spurn grammar. Could you tell?), but if someone asks me a question and I don’t think about the answer, it is there, waiting for me to express it. I love translating Latin…it feels the same as working out an advanced Suduko puzzle.; you solve little pieces and get a glimmer of how it all goes together, and then all at once you’ve solved the meaning of the sentence, filled in all the numbers. 
chest, heart, IV, new drugs, pain, pancreatitis, PICC line, tired | 4 Comments

Droplets

It’s surprising how just the smell of alcohol swabs, the taste of saline in my mouth, is enough to make me scared. Not scared of the actual infusion of a 1/4 dose of minocycline. What makes me feel ill before the medication actually is even hooked up to me is the knowledge that in hours, or days I am going to be feeling terrible. Or if this tiny dose doesn’t do much to make me herx (ie: all my symptoms will get infinitely worse because of the toxins released from the bacteria dying in my body), when we increase it to 1/2 a dose, and work our way over a few weeks, or a month to a full dose…well, then I will start to feel lousy.

It is really, really easy to get used to not doing IV meds. Because when you are on them, you feel terrible and ill all the time, and when you go off them, you do go downhill a little, but gradually. It’s nothing like this burning pain that started up in my chest 5 minutes ago. And we’ve only dripped in about 1/8 of the 1/4 dose I will be doing tonight.

I only was infusing for less than a minute before I could feel the cold hands of the drug sizzle out through the end of my peripherally-inserted-central-catheter into my heart. The best way I can describe it is it feel like heartburn, but literally in your heart. It feels like butterflies flapping around the cage of your abdomen, but instead in your rib cage. It is a cold feeling that seeps over you, kind of like what I imagine it feels like when those humans in the ‘Invasion of the Body Snatchers’ get taken over. This feel creeps over you and then suddenly it’s all around you, all in your lungs and your head and your heart and you feel like you can’t get enough air. It makes me want to cough until I can clear my lungs, but that won’t happen. You can’t get out what you’ve put into your veins. Only your organs can filter it out as best they can.

On the bright side, I only have to infuse ever 3 days or something like that. So basically when infusing, it feels scary and painful, and after that I just have to wait for my worst symptoms to peak. Easy peasy. Beats an IV every day!

You know what makes infusions fly by? The Halifax Comedy Fest. And coconut ice cream, with frozen raspberrys and chocolate chips. Pick your chocolate covered poision and put it together with your favorite CBC show, and basically that’s the making of a fantastic evening. And I can trick myself into thinking this ‘invisible’ clear fluid isn’t all over my body, trickling under my skin.

It is going to be fine. It will be fine. It was fine before. I can do this again. That’s what I need to remember.

I can keep doing this until I’m better or at least until the world runs out of Coconut Bliss ice cream. ~

abdomen, babesia, colon, CT scan, dr. marra, ER, hospital, kidney stones, laxatives, MRI, pain, pancreatitis, the straight and narrow, tired, ulcer, ultrasound, X-Ray | 5 Comments

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!

bloodtest, CAT scan, drugs, ER, hospital, injections, pain, pancreatitis, ultrasound | 1 Comment

Pancreatitis

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 ‘RateMyHospital.com’, 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! ~

ER, MRI, pain, PICC line | 5 Comments

A True Holiday Miracle

We have officially become a fixture in the ER. 3 visits in 3 days is a new record for me.

I should start by saying I am perfectly alright, and that us spending an average of 5 hours in ER each visit was not a reflection on the medically seriousness, but on how awfully inefficient the medical system is in Canada.

Basically, I was having a lot of strange sensations and pain in my arm, around Christmas, so on Boxing Day we went to a walk-in clinic. I get a warm fuzzy feeling when I enter a clinic, and the friendly receptionist in designer scrubs greets us. The thrill of familiarity of checking boxes of symptoms and filling out my name and Care Card # (which I need hardly point out I have memorize?). The smell of kill-everything disinfectant and hand sanitizer. Okay, I joke. Those are all the things that really BUG me when we go to a walk-in clinic. Except for the friendly nurses :).

We were hoping to not have to go to the ER to have my arm checked out, and instead check and see if I had an infection or something. I have been feeling quite ‘low’ lately, sometimes an indication of something more going on than the Lyme. This doctor was, like, actually a wonderful doctor. We usually have to demand a basic CBC (blood profile), just to make sure everything is normal while I’m on the drugs, but it was like this kind doctor actually got it. I wasn’t the weird, trouble-making, difficult patient that some doctors seem to think I am. Meeting wonderful doctors gives me such a feeling of hope for the future. I know now that there are some excellent physicians out there, and once the BC CDC takes the heat off doctors trying to help Lyme patients, I think there will be loads of helpful doctors waiting to look after us all.

The doctor at the clinic was so nice and sent us to the lab at the hospital to get tested. That was when we discovered that my line wouldn’t aspirate blood (ie: we couldn’t pull blood out of the PICC Line). We could flush through saline just fine, but no luck with the blood. So of course, the way you solve all simple, little problems in Canada is to head to the ER. It is very frustrating for everyone (especially the staff and patients!) to have to wait so long for non-emergency care, but it’s the only way to get something done reasonably quickly. After a long wait, the put some TPA into my line, which is a kind of magic fix-em & clot-buster. It takes an hour for the stuff to work, so there was much knitting and audio-book listening. Well dose #1 didn’t work, so  they sent me home that night with another dose in my line, in the hope that my line would clear up.

The next day…still no blood. “Hunh? This is funny…It usually works.” was the response. I hear that a lot  though :P. So I had another dose (hours of waiting occurred in-between first seeing the IV nurses, and getting the TPA, and then them trying to take the TPA out. I condensed all that waiting into a few lines…lucky you guys!). The line turned out to be good an blocked, and we couldn’t get any blood for the blood-test, or for any other reason. The doctor was kind and a good listener, and suggested that we should pull out the IV line. This usually wouldn’t be a problem. They’d just put another one in and I’d be find to do my meds. But with no doctor in Canada willing to put in a PICC line for treatment of Lyme disease, this wasn’t an option. The truth is these lines are expensive, and I have been sick for so long and it costs so much money; how would we get another line? We explained the situation: how we couldn’t get any help here, and that this IV line was the only way I would every get better. He let us go home, telling us that someone would get in touch tomorrow about coming in for a dye-study, to see how the line was blocked, and if they could fix it.

It was much to our surprise that the next day we found ourselves in the imaging waiting room. The whole afternoon had a shiny, surreal feeling to it, as they kindly settled me into the clean room, politely asking which PICC line we’d like (so of course we chose the purple and blue one! ~kidding). They even managed to put the new PICC line in the same site as the old one, something they apparently hadn’t done before. They injected a little dye to help them see inside my body. Then there was a lot of poking in my arm with guide wires and several staff powwows before they got everything in order and slapped a clear dressing over everything. They sent me home with tons of extra dressings and such.

I was resting peacefully at home for about 6 hours after. The pain creeped up on me very slowly until I could not ignore any more the agony in my chest. Pain thrumming in my chest, making it difficult to breathe. I tried to articulate how I was feeling, but all that came out was slurred, broken sentences. So it was back to the ER again, with our mind on the possibility of a blood clot. I have to chuckle, even with the pain, as we explain to the intake nurse, that, no, we haven’t moved in the past 24 hours, and our contact information has remained the same.

Pain escalating, radiating from my chest around the back of my ribs, down my legs. Belly cramps. The pain was beyond my control, something that despite all my peaceful breathing I couldn’t think myself out of. They didn’t know what was wrong there, but gave me an IM of ketamin, a pain drug/low-dose anesthetic, which calmed things right down.

It wasn’t until we got home that we had time to put a couple of repeating patterns into a more succinct hypothesis. I have had severe chest pains before after having contrast dye. After MRI’s, after my CCSVI therapy. The symptoms, the way the pain traveled, was almost identical to those other times. So hopefully this means no more dye for me. It has always made me feel ill inside. Tight in my chest.

But on the bright side of all this, I have a Canadian PICC line poking out of my arm. A PICC line that was put in here means they have to take care of it. Wow. A true miracle, yes?

beach, knitting, pain | 2 Comments

All that the tide brings…


PINK!

Last night, instead of going to bed with cold-to-the-touch-numb-to-me feet, they were a shockingly normal color. We have taken pictures of my feet when they are a purple-bluish or red color, which usually doesn’t show up in a photo well. My feet started turning strange colors when I first became ill with bronchitis/pneumonia in 2008, at the very beginning of my serious Lyme illness. There was some talk about Renaud’s syndrome, but my feet weren’t turning colors in the right order, so that was quickly ruled out. My hands and feet were always cold, but now, just 2 days after the CCSVI procedure, with unblocked veins, the warmth and feeling are returning to my limbs. It is kind of exciting…I hadn’t realize I had lost so much sensation in my limbs, if not all of the feeling in my legs. Maybe sooner it will be easier to walk. Who can say…?

It is going to be a brilliant full moon tonight. The tide is very high. Most people have seen scientists projections of what the future water-levels will look like. Its not very promising for shore-dwellers, and the major cities set by the sea. At around 5 o’clock, at the busy Aliso Beach, 20 minutes from where we were staying, the waves were coming in so fast and furious that picnickers and sunbathers had to jump up and flee the tide. It all happened so fast; one minute the sea was a few hundred feet away, and over the course of what felt like a few minutes, it was up to the sidewalk. The water came up and over into the parking-lot, leaving behind much debris and sand.

there goes the picnic

Another thing we have noticed here is how much erosion there is. It is very dry at this time of year, and although bougainvillea and cacti cling to sandy banks, not much is holding back a slide in the wet-season, or preventing the houses perched precariously at the hill top from falling into the sea. Cement and mesh is often tacked to the sheer ‘sand-faces’ (what probably was a rock face a few years ago). I am used to drought from living in both Northern California and then Vancouver Island summers, but because the landscape isn’t ‘green’, it feels so much more serious. I suppose it is just as well that less people live down here; less demand on limited water resources. But I guess flooding fields to grow almonds and other veggies use up plenty of water in the region. Maybe its the warm weather coming into play, but everyone here seems very ‘relaxed’ for California. The pace of life doesn’t seem to hectic. There aren’t that many people living here, the congestion no where near as much as San Francisco. The air is cleaner down South too, which I only hope lasts.

pelicans riding the (air) waves

There really is something to the saying that a sea breeze cures sickness. Maybe its just that it feels so damn good listening to the waves, letting them lull you to sleep. I think I read something about the fact that minerals are beaten out of the rocks by the waves are released into the air, which makes the air feel so good to us. When we realized that all of the sand (and parking lot!) at Aliso Beach were quickly flooded by the waves, we decided to head to another spot. It is fast becoming my local favorite. The beach is nearly deserted, and pelicans swoop by every now and again, landing with a ‘plop’ on the waves, ungraceful sitting as they are delicate in flight. Pelicans look so large close up, because they shrunk in size in my memory. They are practically the size of Condors!

I’ve begun knitting my PICC line cover. How deliciously normal it was to sit on a lounge chair on the beach, knitting, while the sun glares off very pale Canadian skin. I was a little cooler than I’d be willing to admit in the auditory world (e-confessions are fine of this nature…), hence the sweater, scarf, and sarong. But undaunted as the good little Canadian spirit and pride in me can be, I was determined to bury my feet in the sand, and watch the sun twinkle behind a cloud. Hey! – a twinkle is more than we can get in Victoria for several weeks…I’m not complaining!

Watch out!

I feel like a 4-year-old when it’s time to leave the beach. “But I don’t wanna go” *insert a pout here Amy – my cuz – would be proud of*. The beach has a kind of magic that I am wont to give up. It seems like as soon as a plunk down in the car and start brushing sand from between my lime green toes that I have returned to another plane in the universe where I am very ill, and people have to take care of me. On the beach, my imagination is free.

MRI, pain | 0 comment

The Screening

 I have been so exhausted over the past two days, that even the most mundane tasks seem overwhelming, except, of course, eating some vegan fruit gummy’s, which cheers me immensely. I thought that a high-powered (3 Tesla’s vs. 1.5) MRV (Magnetic resonance venography) couldn’t be too bad, but clearly I had underestimated the beastly machine.

En-route to the Clinic

In my youth, I have had many MRI’s, always checking that my brain was ‘normal’, not affected by my genetic condition, NF. These have always been mildly traumatic experiences, but holding Mum’s hand helped, and thinking of an open field or the sky, waiting beyond the facility doors. It’s the sheer volume of the machine that used to frighten me, but with an injection of tranquilizers, it was easier for my child-self to sit still for the 30-45 minute test. The MRV was looking for blocked veins in my neck (which would make me a candidate for this CCSVI therapy). The only place in Canada that has the equipment to do this kind of screening is in Vancouver, luckily, at a private clinic. We waited awhile in the high-ceilined, first to be ‘refereed’ by their physicians to get the MRV done, and then for my turn in the ‘coffin’.

If you have never had an MRI or MRV I will try my best to explain how it is, although you wouldn’t believe just how loud or uncomfortable it is, especially if you’re head and torso are deep in the machine. The table that you must lie on, if you are having an MRI of the brain/neck, is unbelievable ‘firm’, as though a small piece of uncompromisingly rigid foam is covering a rock hard plate, which is pretty close to how it is. It helps the image show up clearer, and though I’m sure it is important, I would have appreciated a bit more padding ;). The pain I suffer from affects me in various ways and depths (skin, bone, joint, nerve etc). Touching things with my body, or being touched causes wave after wave of excruciating pain to crash over me i, often making me pass out. Even sitting in a chair or lying in bed hurts, but I was turned down as a candidate to live in a space shuttle in zero-g, so what can you do?. I had heard that the test would probably take about 1.5 hours, but this turned out to be ‘active testing time’ meaning the time the machine was taking pictures. I thought I’d be able to bear lying on the hard table, for the estimated time, although I expected discomfort. The machine is very narrow, and an apparatus rather like a hockey-mask is put over your head, only increasing the sensation that you are trapped in a sarcophagus. I had no idea I was claustrophobic until my first MRI, where I found it difficult to breathe and keep myself from panicking. I am not even sure I was afraid of confined spaces until I found myself in one. Once you are tucked in and ready to go ,inside the machine, you are the requested to lie still, while the pictures are being taken, otherwise the test has to be repeated. Blurry pictures cannot be read well.

How it usually goes is a sequence of pictures is shot, and usually a technician talks to you in between the fifteen minute ‘photo shoots’ to tell you how long the next one will be, and either that you are doing well, or to try and sit still longer.  Yes, this is infuriating. Then the machine, which has been humming in the background all this time, awakens, like a monster rearing in it’s restricted, echoing plastic cave. A quick tattoo of booms jumps around the cramped space, a precursory warning of what is coming next. I usually jerk with the first BOOM of the actual picture taking, at such a high decibel, that even with the earplugs pressed to your head with pieces of foam, it cannot possible hope to drown out the racket. I think that they hope the earplugs will have a ‘placebo-esque’ affect on your eardrums, because in no possible universe could they seem helpful. The sound is so strong that it is impossible to think any thoughts while it blasts you, sometimes in a steady rhythm, on-off-on-off-on, and at other times a wave of constant sound, varying in pitch. It is exceptionally boring, because all you can do is just lie there, focusing on not moving, which of course makes your nose itch at the most inconvenient time, or a tick to go in your calf or your foot twitch in rebellion. Every thought is blasted from your mind. I wonder if this was an inspiration for the method of ‘questioning’ where the person is subjected to constant, defining music, in part to prevent sleep and wear the person down. It certainly is physiologically and physically draining, being so tense yet still for so long. Ever muscle rigid, crying to move, yet taped into place with sheer willpower. During the few seconds of respite while the machine moves you into place for the next set of photos, you can shift slightly. Wiggle. But the thing that would relieve the pain would be to roll on your side, to stand, any position but this one. As the minutes drag by, panic usually grips me. At some point I feel as if lying here anymore will cause my body to explode, that my sinews will be pulled free of the joints, which would relieve the pain. Just let it be over. Just let it be finished. The injection of contrast dye during the last few sequences makes my stomach flip over, squirming, and a shaking feeling grip my arms, spreading slowly over me. Discomfort is always my reaction with the dye, in part because it brings some part of me back to a terribly painful and frightening test I had as a toddler, again with an injection of dye, which I can remember vividly. At least I can tell the end is in sight, and the dye will be out of my bloodstream soon.

I’ve found spending time wishing something will end only makes it last longer. Just let it end… and 2.5 hours later it was finished. The pain is so great that I can barely sit up, just flipping onto my side would be enough, as the IV is slid from the crook of my elbow. Every inch buzzing, screaming, the relief enough to make tears leak from my eyes again. I know if you have not had a test this long, or aren’t in pain to begin with, that it would be difficult to understand the agony. I only hope that if you have to have this test done, the place where you go has earphones in the machine :), and that you really really think the procedure will help.

Then a burrito. Car. Bed.

blood count, bloodtest, confusion, dr. ghesquiere, infectious disease doctor, pain | 0 comment

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

fever, pain | 2 Comments

The Lyme-Flu

Sweating is absolutely disgusting. I feel so utterly drained, dehydrated and sticky. Ever fiber of me that is still connected with my drugged brain feels taut, tense and oddly like they have been roughly rubbed and stretched the wrong way, and the sinews broken and hastily knotted back together. I have spent the day alternatively sweating and cooling. The infuriating thing is I actually have an ‘under’ temperature of 98 F (36.6 C), which is actually higher than it usually is, but still .8 F below normal. I did have the other kind of fever earlier on in the day, but it seems to be all over now.

I started my afternoon feeling horrible. The terrible Lyme-related suffering creeps up on me very slowly, so that between the minutes I can feel myself slowly sliding into the anguish, before it engulfs me like boiling water. My body began to shake violently, and it was like I had been plunged into bitterly glacial water. After the shaking wound to a halt, I just rested for the day. My clothes are damp with sweat and I feel like I have been shaken upside down for awhile, the blood pounding in my temples. The feeling is like when I see blood, the feeling of going into shock, or the sensation of distance after you have lost a lot of blood. I need to rest now.

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