Archive of ‘MRI’ category

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!

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?

Across the Strait of Georgia

A trip on BC Ferries is always a pleasant one. When I first came to the island, and across the Strait of Georgia, I spent the hour and a half ride with my nose pressed to the glass, taking in every new island’s pristine greenery, as we traveled from inlet to inlet. It is an amazing introduction to the Island. Small homes, rocky beaches, and lighthouses dot the otherwise forested islands. The deep green color is there all year round, blending evenly with the smog-free blue sky above, down to the crystalline gray-blue water, waiting at the bottom of the cliff. I’ve been on this trip many, many times since we moved here, and I am still gripped with a fascination, and an urge to take pictures through the salt-spray coated windows each time.

We were headed to Vancouver, to have an MRI and ultrasound, checking to see if I am a candidate for a procedure called CCSVI, which was developed for MS patients by an Italian doctor, Dr. Zamboni. They are looking for blocked veins in your neck, which could cause a vast varied of problems. Thankfully, I don’t have MS, but several Lyme patients have found this therapy very beneficial for them, which makes sense, as Lyme disease and MS mimic each other. It would be nice if this solved a lot of my problems…

 I am really exhausted after all the traveling we did today, and am glad the place we are staying at is so nice. It’s on the campus of UBC, close enough to the downtown core that it’s not a lot of work to pick up a vegan cupcake from Whole Foods.

Boat headed to one of the islands…

It’s Mother’s day today, and of course we spent a lot of time today on the ferry, which we can pretend was a pleasure cruise ahaha. Every day is mother’s day, though, in the real world. Mother’s are the best, everyone knows that, and I don’t mean to brag or anything, but I have the best mom every :D. I guess one good thing about me being so sick is that we get to spend lots of time together.
(Love you, Mama! <3)

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.

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