C'est Difficile

The beginning of 2016 was spent going for a myriad of appointments. Recently I was trying to figure out, with the help of my ever-so-organized Mom, in what order things happened back then so that I could more easily organize my thoughts for writing this Blog. She sent me several texts messages with my appointments listed, and my eyes bugged out.

I disctinctly remember having something like 12 appointments in the span of two weeks at one point. No wonder we were always so tired in those days. Even now, appointment days really kick the crap out of me, and requires a lot of energy management.

So I started the year with the hope that Physiotherapy would fix my contracture, the Methotrexate would tame the Spondyloarthropathy, the Colorectal surgeon would fix my abscess nightmare and that my GI might be able to tell me something I didn't know.

I began physio, and was informed that it would be a long and painful haul. Even a year and a half ago, I am still working with my physiotherapist to work through the last one or two degrees of contracture. My legs were skinny and weak, and I was able to do very little in the beginning - squeezing a ball between my knees was difficult.

Methotrexate is a form of chemotherapy, often used to treat things like rheumatoid arthritis. I began it at the end of December 2015, being told that it would take approximately six weeks before I started feeling anything and that it wouldn't fully kick in until the 6-month mark.  I lasted 3 months, needing to go off of it at the end of March because my liver was failing.  It made me look and feel like absolute garbage; I was losing huge clumps of hair daily. I stopped brushing my hair as often and covered it more, just so that the loose hairs weren't always falling in my face, reminding me of how sick and uncomfortable I was. Of course when I would brush my hair, I could pull out up to four clumps. I was really feeling low and sick.That drug was a nightmare and I wouldn't recommend it to anyone,. Having said that though, I have spoken to two people recently, one of whom has been on this medication for three years, and both tote is as a life-changer. I guess it just depends on your body.

It wasn't all bad though. I had started getting out a little bit at the end of December 2015, and was doing so more and more. I managed to get rides (because I still wasn't driving) in to the city to see my neighbors and friends for the first time in way too long. I also saw Coeur de Pirate perform live, and since I was in a wheelchair, we got primo seats. Hey, there have to be some advantages to being ill. I also started crafting, making vintage bohemian dreamcatchers. This first one I made took me about 20 hours to put together, and was a big step in feeling like a creative human being again. Rosie and I have since made many more such dream catchers, which you can check out at Fair and Fowl Deigns (fb, instagram).

I met with the Colorectal surgeon at the beginning of February 2016, who had me lined up for another anal abscess drain at the end of the month. I was very much convinced that I had a fistula at this point, but the Doc was reserving judgement until the actual surgery.

In the meantime, I saw my then-Gastroenterologist for a colonoscopy. This was a HORRIBLE experience, as the GI saw fit to not sedate me for the scope. Going in to it, I was under the understanding that I was going to have conscious sedation. It wasn't long before I realized that, "Hey, this is happening. And I'm still awake." I was intensely uncomfortable, feeling the pain as they took samples for biopsy. I was then not permitted to leave, as evidently they had caused an ulcer to bleed, and wanted to keep me under observation to make sure that nothing came of it. I was very frustrated, having gone through a painful procedure, being under the impression that things would go one way, and then sitting there worrying that I had yet another perforated ulcer. I was released within a couple hours. Two months later I saw the GI for a follow-up, and he said that everything looked fine and we booked for a year from then. I ended up canceling with him and didn't see him again, as I was not impressed with the lack of care I had received.

On February 25 2016, I went in for the second surgery on my abscess. Sure enough, when I came to the Doc said that there was no fistula, that he had just cleaned out a lot of infection. I was put back on antibiotics for two weeks, and everything was going fine. I continued going to my physiotherapy appointments, and was still being monitored by my orthopaedic surgeon. I was spending more time hanging out with friends, I started learning to play the guitar, dabbled a little more in artistic expression and started de-cluttering all of my stuff in my parents' storage in preparation for moving back into my house that coming summer. These were busy days, and I was slowly progressing. I began driving myself to my own appointments at the end of March 2016. I finished up my round of antibiotics and started taking probiotics with the hope that I could get my gut flora back in balance.

I really started feeling like heck. The abscess was back (shocking), and my guts felt like garbage, which I associated with the start of my probiotics. I stopped taking them and once again started taking Flagyl (antibiotics) for my anal abscess. On April 14 2016, I went in for surgery #3, and this time it was recognized as a fistula and a silk seton thread was inserted.

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At this point, I thought I was in the clear. I didn't have to be on antibiotics anymore, the fistula solution was in place, and I was trying to work through the contracture in my knee without going back on to medication since stopping the Methotrexate, even though my rheumatologist wanted to try Remicade next. I was adamant though, I wanted to do it all naturally, as much as possible. In retrospect, that was an error in judgement on my part.

Man, I thought I had seen the worst of it already. Perforated ulcer, going in to sepsis, anal abscesses, hydrocortisone shots to the knee, losing hair, 50 degrees of contracture, 10 months on crutches, losing my independence and control over my life, feeling isolated, not being able to work or dance or move... seriously, what more could there be?

As my body adjusted to being without antibiotics (now that I had been on them for the better part of the previous eight months), things were going wrong. Very wrong. For a week I lay in the fetal position with hot lava roiling in my stomach, unable to eat or function. We finally managed to figure out what was going on: a stool sample test (which of course they lost and I had to repeat) had unveiled that I had contracted Clostridium difficile (C. diff.), an absolutely horrible bacterium that causes inflammation of the colon, diarrhea, loss of appetite, weight loss, pain and nausea and in some cases damage to the bowels. Generally, one contracts C. diff after prolonged use of antibiotics, hospital stays and if they are ill; it can be fatal, as it kicks you when you're down. I was an ideal candidate then, and got to add it to the pile of weird-ass stuff I was going through. They put my back on Flagyl, at which I balked, because, as I pointed out, if Flagyl was going to work, I wouldn't be dealing with C. diff. now, because I had already been on it for months at this point. Doctors know best though, so I unsuccessfully tried Flagyl, for two weeks. I was then switched to Vancomycin, being warned that this was the strongest antibiotic short of putting me on IV, and that C. diff often took many attempts to cure. I was lucky (ish) though, and after just shy of a month on the Vanco, I kicked the C. diff. Would not recommend.

C. diff was damaging physically, but also managed to damage my burgeoning love-life as well. One thing that is so difficult with being ill is the resentment of seeing healthy people around you going about their lives in ways that you might envy. It had been a long time since I had dated anyone, and was now processing a lot of jealousy and anger knowing that my ex-boyfriend was now dating a friend. I felt lonely, disabled and could hardly remember feeling like a woman at all. And since I had spent so many hilarious times swiping through Tinder on my friends' accounts, I decided to give it a go myself. My mom drove me to my first Tinder date, which was a sushi lunch in Steinbach. Needless to say, there was no second date. However, mid-April, I had started talking to this metal head. We had some great conversations and I was looking forward to meeting the guy. We were supposed to meet on a Thursday, but C. diff vehemently disagreed. So we postponed to the following Tuesday, April 26 2016.

Tuesday rolled around, and I still felt like the hot innards of a garbage pile on a summer's day. I didn't want to risk postponing the date again, so an hour before I was set to meet with him, Rosie and her Mom were massaging me, pep talking me, giving me a peppermint oil halo to help me with my migraine. I had thrown up four times that day and was running on absolutely nothing. Ian and I met that evening at 8PM, and talked for a few hours. He seemed like a nice dude, but it was hard to focus when I was so busy worrying about his thoughts on my crutches or my number of trips to the bathroom. Miraculously though, we made it through that first date, and even though I had a lot of awkward explanations about my health, there was hope for a second one.

I felt like I had been through at all, and that I was surely on the up-and-up. However, the full reality of my disease wouldn't settle until mid-June 2016, where all of the puzzle-pieces of my health would finally come together, agonizingly. For now though, May was proceeding cheerfully enough. I was in the exciting first moments of a new relationship, coming in after bed-time and trying not to wake my parents, as though I was a teenager again. Spring had sprung, wildflowers were everywhere, and I was going to be moving back into my house at the beginning of July. I was still working hard on de-cluttering and packing, and my social life was becoming more active. I spent a lot of time exploring nature in those days too, driving around and exploring the rural roads after my physio appointments, watching flocks of birds nesting, discovering wildflowers and going down roads I hadn't seen before. I was preparing for a new life, long-awaited.

The Winter of my Life

WARNING: This post contains gore. There are pictures of my open wounds, which aren't pretty. When I was sick and had these open wounds, I searched online to find pictures that were similar, hoping for something to which to relate, some clue that I wasn't going to die. I post these with the hope that it will help someone on their road to healing.


When all of this sank in and I realized that this would be my life for the foreseeable future, I decided to treat my convalescence as a gift, a time for learning. When something difficult occurs, I try to look for the lesson. So I've learned about pain (not that I've gotten any better with managing it), empathy, nutrition, I've learned a lot about the medical system, to the point where people have asked me, "Are you a pharmacist or something?" Sigh, no, my life just sucks.

Recently, the thing that I am learning about is Depression. I've known people to go through it to varying degrees, myself included. When I came home from my first hospital stay, where I had a laparotomy to repair a perforated duodenal ulcer (previous article: The End of the Days of Plenty), I had my first serious experience with Depression.

When I came home with my folks on September 27, 2015, I was so relieved to be out of jail the hospital. I remember hobbling into the living room and snuggling up on the loveseat (where I would spend the better part of the next ten months) under the softest brown and beige blanket known to humankind. It was the night of the Super Blood Moon Eclipse, and I watched it from my spot on the couch while I rested and watched TV with my folks. It really was a beautiful evening that inspired some drawings in my journal.

The next day, the hope was gone. I had spent my last two days in hospital struggling to keep food down, and that problem was persisting, along with an inability to poop. I laid on my bed in my childhood room, for the first time in my life really thinking, "I might actually die from this, for real." I was terrified, but still really didn't want to go back to the hospital. Mom started frantically calling my Doctor, who managed to get back to her quickly. We were not to panic yet, just to try getting really simple foods down. So I had my little TV tray next to my bed, which contained books that I didn't have the energy to read, along with small bowls of raisins and cheerios upon which I could nibble. I also sucked on mints and drank peppermint tea to help with the nausea.

I was in hell. The pain in my core prevented me from doing anything with ease; sitting up in bed alone was a five-minute struggle that all but required a rope-and-pulley system. I slept a lot, often woken by the fact that I was sleeping in the same position on my back, which was the only option for me because my stomach wound was preventing me from turning onto my side or stomach.

My knee was getting even worse too, because now that my core had been ripped open, I couldn't balance myself on my crutches like I needed to. I ended up using my right leg to support my weight, and destroyed it even more. Luckily, by the time my knee was so bad that I couldn't use its assistance with the crutches anymore, my core had healed just enough to take the weight off my leg fully. Small mercies? I was pathetic.

After a few days of mostly surviving, I was permitted to graduate from sponge-bathing to a shower, allowing the water to run over my stomach wound. I was still so weak and in so much pain, my folks brought in a stool that my Grampa had used nearer the end of his life in the bathtub so that I could sit in a slightly more comfortable position. It took me a long time to bathe that night, because every movement was such a struggle.

That was the night that things started to get even wrong-er. When I ran water over my wound site, it started discharging pus around the staples. At first I thought that maybe this was normal, but over the next few hours it was soiling clothes alarmingly quickly. I was due to have the staples removed anyways, so I went to see my Doc on October 1st. When he and the nurse saw me, their faces fell and they rushed me to a seat. Evidently I was looking a little green from having to crutch in from the car. Looking over my wound, they decided to remove half of the staples, hoping that it would allow some of the infection to come out, but that it would still manage to heal. I had another brief check-in on my wound on October 5th, and then October 8th was it - the wound was not going to heal and the staples needed to come out. The nurse took out the ones she could, and had the Doc remove the trickier ones that were in bad positions (as you can see in the picture).

 

My stomach was busting open and I was more convinced than ever that I was going to die. On October 9th, I went back, filled with alarm and discomfort, for my post-srugery check-up. Of course, it wasn't my surgeon or anyone that I had ever seen before (because lol medical system), so my story was totally new to him. I thought he was crazy, because he didn't seem phased the gaping hole in my stomach. He was far more concerned by the fact that I had all of these weird little under-the-skin lesions popping up all over my legs. I lost count when I hit 20 in total between the two legs. Additionally, I had a sinus infection for the first time ever - clearly my body was in total shut-down mode.

I was put on antibiotics again for my sinus infection. I started HomeCare on October 10th, nurses coming every day to take care of my wound. Wound care works like this: they take a piece of gauze that has been soaked in saline solution and pack the wound with it. Depending on the wound, the packing might be stuffed right in there and difficult to get out, like when they packed my fistula in surgery #5. This is not at all pleasant. In the case of my stomach, packing was a little less aggressive, the saline-soaked gauze (sometimes with a bit of added gel for moisture) laying neatly in the wound bed, generally easily removed. It was then covered by a couple more pieces of gauze to catch any extra discharge followed by the bandage, which was water proof for shower days.

When you're in a difficult or negative situation, it's hard to see the end of it. I didn't think that my stomach would ever close up again. I couldn't understand how my wound was supposed to heal if something like staples didn't do the trick. It's actually pretty interesting, the way it all works. Basically, the wound needs to heal from the inside out as the infection is drawn away. Dressings are changed in a sterile way, often enough to keep things clean and effectual, but not too often so as to keep the wound environment warm, moist and safe while cells regenerate. During the healing process, the gauze lying directly in the wound bed acts as kind of a net, lifting the slough out of the wound bed when the packing is removed after a time. The slough is the white stuff that you can see in the following pictures, and is the infected, pus-y part. As the slough disappears, the healthy red granulation tissue is able to take over and close up the wound.

Things went on in much the same way: I rested and struggled through the days, dreaded having my wound opened up and fiddled with by a nurse every morning, and then every second morning after October 24th. You just adjust your baseline and get through another day. I like to think I adapt to situations pretty well. At first, I couldn't even watch when the nurses were working on me. After about a month, I had gotten so good that, when a day came that a nurse couldn't make it in, I was tending to my wound myself (I can't believe how skinny my arms were, and how distended my stomach was).

The support I got was amazing, and we all liked to joke about what I was going through (because if you don't joke, you cry). I often self-consciously talked about my warped belly button and how I had become FrankenKara. Well, my family and friends aren't the sorts to miss an opportunity to tease. They actually got a laugh from me sometimes, which didn't happen much in those days.

I was depressed, uncomfortable and had pretty much lost the will to live. I was in so much pain and so exhausted, that I couldn't be bothered to talk to people or do much of anything. Even my dog stayed away from me because he had gotten scolded too many times for jumping onto a painful part of my body.

No rest for the weary though, because my knee was still a serious problem that needed addressing. My Homecare nurses had warned me that I had to be careful keeping it in the same position, that I didn't develop contracture. Well, it didn't take long for me to realize that I had developed contracture... my leg woudn't budge. This added fuel to the fire of finding out what the heck was going on. MRIs so far had been inconclusive, and I had been pushing off seeing my orthopaedic doctor again because of my surgery recovery. I did finally go in and see him on October 29th, and I was set up for more tests to diagnose the problem. At this point, we had ruled out many things like lyme disease, blastomycosis, infection, miniscal tear, and now they wanted to rule out bone cancer, making things happen QUICKLY.

On November 2, I had a Comuted Tomography scan, or CT scan at St Boniface Hospital. For those of you who are unfamiliar with CTs, it's an imaging machine that takes pictures and sends it to a computer, from which a qualified technician will read. You often have to fast for 2-4 hours prior to the test, and they will sometimes inject you with a contrast dye, which is apparently safe (except for some people having allergic reactions) and helps light up problem areas in the images. The tech sends a report to your Doc based on their findings, much like an MRI or other scans. They'll describe what it is that they see, like any abnormalities in the bone, ligaments, tendons. They may get more specific, like for a couple of my tests, they observed I had a low red blood cell count, possibly meaning anemia, or a high blood cell count, perhaps meaning inflammation or infection. The technician is not a diagnostician, so the report is pretty much just giving a leaping-off point for the Docs, and may or may not be helpful. For the test itself, you lay on an uncomfortable table while a huge white doughnut passes loudly over you, giving you three years of radiation in one shot (more information about radiation in scans here). That's why they try not to do them too often on one person.

I then had a white blood cell bone scan, or WBC scan, which took two consecutive early mornings in the Nuclear Medicine department at Grace Hospital, November 5th-6th. On the morning of day one, they took some of my blood. They then sent it to HSC to have a radioactive material (indium-111) added to my blood sample, which they re-injected into my veins a few hours later. After 24 hours, the morning of day two, I went back for the scan of the problem area (approximately halfway down my thigh to just above my ankles) where the 'tagged' cells gathered in areas of infection or inflammation. The test showed that my left knee was fine, but that my right knee was inflamed. Once again though, they weren't able to really discover anything more than what I already knew.

You know that saying, leave well enough alone? Don't poke the bear, or wake the beast. I call it worrying a problem into existence. It's like when you're at home alone, you throw your hair up into a ponytail effortlessly, and then look in the mirror and think, damn girl! The next day, you want it to look the same again, so you try and try, but just end up with your hair plastered to your head. So you wash your hair, because you think, hey clean slate, but now your hair is soaking wet. So you blow dry it and straighten it, but somehow it just won't lie the way it was and you regret having messed with it at all.

I'll be the first to tell you that the more the medical system messes about with your health, the more likely it is that things will get worse. They can't always diagnose, and more often than not can only help you manage symptoms rather than fix the core problem. The result is you continually patching your body with the painkillers, steroids and antibiotics that are perhaps prescribed a touch too liberally. 

My guts were already unhappy, as my Proctitis symptoms had been getting worse since July, and were no better since my surgery and all the medications I was on. The second day of my white blood cell bone scan I was really not feeling well. Being up at 5:30am was not agreeing with my stomach (my guts have often felt that way in the past if my sleep schedule is altered too much), and I guess the injection they gave me probably wasn't helping either. I started having a lot of pain next to my anus. It was getting swollen and hard. For a few days, I assumed that it was just a very bad case of hemorrhoids. I was avoiding sitting, soaking often and sticking a ziploc bag of ice in my bum before sleep and trying to calm things down.

Tip of the iceberg

A week after my white blood cell bone scan, I couldn't handle the pain anymore. There's something about having an infection in your body that won't go away. The pain is excruciating, mind-numbing. You can't see out of it, around it. Your body is sapped of all joy and will to live. People try to talk to you but you don't have the energy to give them the time of day, because your whole body is focused on what it can't escape. And never mind the physical pain... infections get in your head. Even when I'm dealing with a minor infection, it's like having a parasite in the back of your brain, burrowing in and taking away everything that you every knew you were. It's absolute misery.

So Mom took me into the ER at Ste Anne Hospital (we meet again!), and they got me all hopped up on pain killers. They determined that I had an anal abscess which needed to be drained, and I would be transferred to Bethesda Hospital in Steinbach for the surgery. It took a while before I was admitted, and all the while I was ruthlessly harassing anyone who walked into my room to give me painkillers.

I'm going to rudely interrupt myself to tell a bit of a side-story. When I was waiting to be properly admitted, someone (I think it was an intern) came in and was asking me the same list of questions as the four people prior (so very annoying). Among his questions, "Are you eighteen?" I gave an impatient look, and said, "No... I'm 28!" A whole decade off! What, they can't read the answers to the questions everyone else asks, and NOW they can't even be arsed to bother looking at my birthdate?! Argh. But Mom was stifling laughter. I had misunderstood. He had a really strong accent and had asked if I was "eating." Mom giggled for a good fifteen minutes after that. I smiled for the first time in forever. Sometimes the funniest moments happen at the worst times. Mom still giggles uncontrollably when she thinks about this. Tickled her funny bone, I guess. Anything to lighten the load in a hospital.

I had surgery that evening, November 12th. You know those little styrofoam cups that you get when there is free coffee out? Yeah, the surgeon (who was very very good) said that he drained one of those styrofoam cups-worth of pus out of my abscess. Charmant, non? They monitored me for a few days, and I dealt with the regular bouts of nausea. My family and Rosie visited me diligently, bringing me food, stories and laughter. Hospital stays are so dreadfully boring, and visits make all the difference... I'm so grateful for my loved ones!

We can't forget, of course, that as all this is happening, they want me to walk after surgery but of course I can't because my knee is still as hellish as ever. I was bloated from the medications and the surgery, so my scar that was still healing had become stretched and puffy. Nurses wanted to poke around it and I resisted because I didn't want someone who didn't know my system messing around with my wound care. They wanted to test me for super bugs and threatened to quarantine me if I didn't do it. I was so frustrated and felt out of control of my body; fed up and uncomfortable.

On Sunday, November 15th, I was released from the hospital. I got home and threw up four times. I couldn't even keep down a cup of tea. I struggled in much the same way for the next couple weeks, working through my antibiotics and trying vainly to keep my calories in each day. It became a long-standing source of anxiety, trying to keep meals down and feeling like a failure when I couldn't. I was down to 92.5lbs (healthy weight for me used to be 115-120lbs), and desperately wanted to put on weight to create some kind of a buffer between me and my illness.

I finished up my antibiotics after two weeks, and it didn't take long for things to get worse. My abscess had healed over, but the internal fissure evidently hadn't. The pain came roaring back, so on December 4th, I once more went in to Ste. Anne ER. I was prescribed another round of antibiotics and told that I was to be referred to a colorectal surgeon. Unfortunately, the Doc I saw in ER took his sweet time actually completing his paperwork. By January, I was calling every week hounding the receptionist to get him to get it done. Finally, around mid-January, I was fed up and got a hold of my family doc. He zipped off the paperwork within days and my referral was finally sent out.

Thank goodness for Docs who actually do their job right. It's so frustrating being in a position when your health is at stake, and people on the other end aren't doing their part, compromising your health. Between the doctor that thought it would be a good idea to prescribe Naproxyn to Prednisone, and the doctor that couldn't be bothered to follow through on my abscess, I became so jaded about the medical system. All I can say is this: YOU NEED TO ADVOCATE FOR YOURSELF. If you aren't getting answers that you want, you're not accorded the time to ask questions, you don't know what they're forcing down your throat, if something doesn't feel right, don't be afraid to say NO. There is no one else that can advocate for you like you can, so don't feel bad for doing it. The medical system is overwhelmed and reactionary. The poor health care professionals within the system don't necessarily have all the tools they need to help each patient's individual needs, so it is your job to stay on top of what is happening. If you're not satisfied, don't hesitate to speak out or get a second opinion.

My referral to the colorectal surgeon finally went through, and I was set up to go in to see him for February 2nd. In the meantime, I had seen the orthopaedic surgeon three times during the month of December. I must say, he was the best and so on the ball. His receptionist was really on it too, and after a while they started feeling like family. He set me up with a hematologist, who I saw a few days before Christmas. She ruled out cancer and I learned with relief that I would not need to get a bone biopsy (which I was dreading horribly because I had been told that it was incredibly painful). She did suggest, however, that I might have anxiety. You think?! Try being me at this time and not struggling with depression and anxiety.

The orthopaedic surgeon also set me up to see a rheumatologist on December 17th. At this point, given all of my symptoms, the orthopaedic surgeon was pretty convinced that I was suffering from some sort of autoimmune disorder. The rheumatologist quickly determined that I was suffering from undifferentiated peripheral spondyloarthropathy, which is a disorder causing arthritic inflammation in the joints, most often manifesting itself in the hips and moving down into the leg joints (generally one joint at a time). It often occurs in people with autoimmune disorders, such as IBD, and is much more common in people that have the genetic marker HLA-B27, for which my rheumatologist positively tested me. Spondyloarthropathy can be tricky to diagnose, but as my Doc explained, it's somewhat a process of elimination / putting puzzle pieces together. Everything adds up in me to be a pretty textbook case of Spondylo. His solution was to give me a cortisone injecton in my knee, which is a fast-acting steroid used to decrease inflammation in joints, bursa, tendons and muscles. Mom often came in to my appointments with me because I was generally too out of it or emotional to absorb what the Docs would say. It's a good thing she was there that day, because I didn't hear a word after the injection - it was so painful I almost passed out. After a few hours of discomfort, however, it did seem to loosen things up a touch. He also prescribed me with a drug called Methotrexate, hoping that it would calm the knee down. It would take this drug several months to kick in, however, so we woudn't see progress for some time. He encouraged me to start physiotherapy in the new year as well.

I went for a full body bone scan on December 22nd. This didn't particularly excite me, given my experience with tests thus far, and I was terrified what they would find. I also saw my GI that day, who set me up for a colonoscopy for the beginning of February. At least we would see what was going on inside my guts.

I spent Christmas eve sick in bed. My anal abscess had popped up again a few days after finishing my second round of antibiotics, which I had vainly hoped would do the trick. My dad brought me another prescription that night, and I insisted that everyone go celebrate as planned. The next day I was already feeling a bit better, and was able to enjoy Christmas with my family. I planted myself at the kitchen table and worked in a colouring book from my folks. I felt pretty content.

Christmas holidays brought a well-needed break from Doctor's appointments. and I enjoyed it. I even managed to get into the city for some much needed socializing, having the opportunity to spend a couple nights at Rosie's house. Of course, I wasn't driving at this time, so I had to depend on either family or friends to give me a ride. It was difficult, formerly being an adult and then being thrown back into the dependence of childhood, without the comfortable, functional and energetic body I had when I was young.

Over the previous few months I started to find, more and more, that my identity revolved around my health. There was nothing else to me; I was a sick person. I rested, watching TV and playing video games, surviving each day and hoping that I would be healthier the next. My life was stagnant; I later found out that my brother described the house during that time as "feeling like a morgue." Chronic pain, fatigue, hopelessness, powerlessness, my vulnerable human mortality, piled on top of the fact that I had already been going through huge life-altering spiritual and emotional growth. I had more than enough to deal with, so I suppose that depression followed naturally. and though it seemed that we were starting to piece things together, we had barely scratched the surface. For the time being though, I had some hope that the worst was over. At least my stomach scar had finally healed over; that was a major thing for which to be thankful.

The End of the Days of Plenty

*Story continues from a previous post, "Burn it All Down,"

Summer is a weird time for me. Ok, to be fair, life is a weird time for me. But let's not tug too hard on that thread.

We like to measure things. Time, length, height, diameter, success, do we measure up? We mark times in our lives that were significant because of new beginnings or mournful endings. Our anniversaries, birth dates and the beginnings of new years are often the high points in our calendars. We rejoice at another revolution round the sun, because hey, life is a miracle, and why shouldn't we use that as an excuse for a little jubilation?

I am no exception to this rule, and as summer approaches, I find myself reflecting upon the last two years of my EPIC HEALTH SAGA and where I was not too long ago.

Tl;dr Where last we left, I had been struggling with pain in my right knee for undetermined reasons, but things seemed to be getting better with time and gentle exercise. I figured that things would be ok, so long as things were progressing.

We call that the freakin' eye of the storm, you guys. But let's continue the story in earnest.

The last time that I felt euphoric was the summer of 2015. I had just come out of a string of terrible relationships (both intimate and platonic) where I put others needs above my own, and was now feeling self-love, personal power, and freedom. My knee was on the mend; I had been working out and felt amazing. I was happy, ready for adventure. I had taken a leave of absence from work, reducing down to 60%, eager to explore other career opportunities. The world was my oyster. I luxuriated in the sunshine that seemed to promise days of abundance, stretching lazily on for an eternity.

I crafted, sun-bathed, kayaked. I explored nature, frollicking through the wayside with my best friend Rosie, picking wildflowers and adorning our heads with daisy wreaths. I found my joy that summer, exploring anew things I had long forgotten would bring me delight. I rose again from the ashes of the life I had burned down, a joyful and inspired Me.

Around the middle of August 2015, I went on a trip to South Dakota and Wyoming with my brother and his family. We were gone for just over a week, doing the touristy things. I was all excited because my family had almost convinced me that behind the faces of Mount Rushmore were butts (Google 'rear of Mount Rushmore'). I mean, I didn't really think that it was true, deep down, but I was disappointed that I couldn't at least walk round the other side to see for myself. Alas.

Our first stop was in Buffalo, then we proceeded to Devil's Tower in Wyoming. The rest of our trip was spent hanging around Rapid City, doing Bear Country, Sitting Bull Crystal Caverns, Reptile Gardens and Mount Rushmore. We also stopped at every rock shop we could find, where I bought lovely stone beads and other pieces.

The moment things started going wrong with my health was when I was walking up towards Devil's Tower with my nephew, Zane, on my back. I felt something in my right knee tweak. I had Zane climb down, and I kept on walking. Every day thereafter, my knee grew hotter and more painful, and my shoulders were hurting too. By the end of a day of sight-seeing, I was laying down on my mat in the hotel room, icing my knee and trying to rest. I had unfortunately not brought my heavy-duty hinged knee-brace with me, so I had to settle for a combination of two ill-fitting braces that I found at Walmart several days into the trip. It just kept getting worse and worse. When we got home on April 16th, I limped into the house, got my crutches and would use them for the next 11 months.

My first three full days on crutches were spent in Professional Development. I clomped from session to session, taking my seat at the back of the class on the countertop, where I could prop up my leg with my backpack. By the end of the second day, the bruising from the crutches rubbing underneath my arms was rivalling the pain in my knee. My energy levels were plummeting. I couldn't sleep at night, was using up to twelve cushions under my knee JUST SO to get it comfortable and I was sleeping on a pretty tough futon to boot.

After about a week of this, I couldn't take it anymore and was in to see the Doc. He didn't know how to help me, so he gave me a referral to meet with an Orthopaedic surgeon. While I waited for the next step with the surgeon, he gave me a prescription for Naproxyn (NSAID painkiller), which I would be taking three times every day. This barely even touched the pain, creating only a slight buffer, making it slightly tolerable. I also went to the walk-in sports injury clinic, where I set up to see an orthopaedic surgeon myself, hoping to hedge my bets a little bit on which referral would come through faster.

As though that wasn't enough, I was suddenly getting these painful little skin lesions popping up, that would erupt in pus and not heal (I've had these before, but I thought they were boils, always going away after a time, often leaving a faint scar). I was spending a LOT of time in the tub, trying to cleanse these open wounds and relax my excruciating knee. I felt and looked like garbage.

Now, the new and exciting school year was fast approaching, but I was spending most of my days trying to recover. It was getting increasingly more difficult to put food into my system, because I was getting this heavy feeling in my gut. I was embarking on my journey with my new friends Pain, Fatigue and Loss of Appetite. My previously near-dormant Rectal Proctitis symptoms had started coming back at the beginning of the summer (right around the time that I was feeling amazing) which meant blood in my stool, an urgency to "go" and unproductive trips to the washroom where I would push and nothing would come out except some blood and gas. But now I was passing blood, gas and hemorrhoids were shooting out of me too (my new friend Hemmorhoids!). I tried to call the GI I was seeing at the time, but my referral with him had long since expired (who needs check-ups when you're feeling fine?) so I was out of luck there. I had no energy and could barely keep myself together. I did my best to get through September long-weekend with my family, and said goodbye to summer. It really was an end to the days of plenty (quote link).

The school year began, and I just barely made it through the first two days of opening conferences. On the first day, I crutched around my new school assignment, wondering how I was ever going to get through a school day when I was already drained and in so much pain. On the second day, I was really feeling thick in the guts and exhaaauuussted while I attempted to passionately discuss with my school principal ideas that I had for the new year, including starting a Green Team.

The following two days (which were now off on my reduced contract), I rested and tried to eat really simple, clean foods, hoping that I would be ready for school on Monday. On Saturday, I was in so much pain from my "Proctitis" symptoms that I went to ER. This time they took me off of Naproxyn and put me on Prednisone, hoping that it would deal with the Proctitis symptoms. I was given a sick note for the first full week of school.

After a few days, I noticed with relief that the urgent bathroom trips were subsiding. Things were easing up. I was relieved. That week, I saw an Orthopaedic surgeon at the sports injury clinic, who had me in for an MRI of the knee within days. On the Saturday of that week, I was feeling slightly more energetic, so I decided to power through and go for some light shopping with Rosie at The Forks, hunting for some clothes that I was hoping to wear when I got back to school. For supper, I grabbed a soup at the deli, and a cinnamon bun for breakfast the following morning. After shopping for a bit, we set up a picnic blanket and rested under the trees (myself in an awkward fetal position because of the pain in my guts and in my knee).

I woke up the next morning, Sunday, September 20, and dug into my delicious cinnamon bun, reminiscent of the ones my Gramma used to bake when I was a kid. Mmmmmmm. And then all of a sudden things went wrong. I felt confused. Something had sort of, 'let go' in my stomach. It didn't feel right. Actually it hurt quite a bit. I felt very winded. I broke into a cold sweat, hobbling to the washroom. Did I just really need to go? Why couldn't I breathe, was I just panicking? I tried breathing through it. I sat on the toilet for a bit while watching some nature show about sharks on Netflix, just trying to calm down. I stumbled into the living room and climbed half onto the futon / my bed, crawling into the fetal position, gasping for air.

Rosie was insisting that we go to the hospital. I really didn't want to. I hadn't had energy to bathe in a few days and my hair was greasy from being unwashed for over a week. For the previous half hour, I had been sweating into the clothes that I had already been wearing for the past twelve hours. And I did NOT want to go sit in the ER waiting room for the next 8 hours in this state.

But then I realized that I was being foolish, and that it was time to go to the hospital. I grabbed my purse and climbed into Rosie's car, without a bra and or even a goodbye glance at my traumatized little dog. I reclined the seat all the way and shuddered with pain every time we passed over a bump. I opted for driving 35 minutes to rural Ste. Anne Hospital, where I knew that I wouldn't have to wait for hours in the waiting room.

I went through triage and waited about an hour before being taken in, put on painkillers, and given an X-ray. The Tech who did the scan was in disbelief... apparently this sort of thing didn't usually turn out to be anything but a sore stomach. I suppose I was a source of excitement that day, because what they found was a perforated duodenal ulcer. Basically, a sore had formed just below my stomach, getting so bad that it let go, and now my stomach fluids were leaking into the rest of my body. I later found out that Naproxyn was the likely culprit for the ulcer, and that I could have been given another drug to protect my stomach lining from the drug. Cheers, Docs, thanks a lot.

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I was told that I was to be transferred to the Health Sciences Centre in Winnipeg for an operation to repair the ulcer. Around 4PM, Rosie called some of my family and my boss to let them know what was going on. Then I gaspingly called my folks, who were on vacation with my aunt and uncle in the maritimes, and told them what was going on. I tried to reassure them that I would be okay until they got back in about a week, and promised to keep them posted.

My first ride in an ambulance was eventful, and admittedly, a little exciting despite everything. I helped guide the paramedics through the local detours, and they apologized every time we hit a bump or drove over train tracks. I was at least being comforted by Richard the Hot Paramedic, who was so kind and warm I would have definitely given him my phone number if I wasn't hurting, sweaty and not wearing a bra. When we arrived at HSC, my paramedics waited with me while we waited for my admission, which took about another hour.

When I was taken in, my comforting and kind paramedics said goodbye to me and wished me luck. Rosie had followed in her car, stopping at home to grab me a couple things (a bra, for one). They gave us the low-down on surgery, the risks and at 8PM, I said bye to Rosie too and plead to the Universe that I wake up on the other side.

When I came to, I had this horrible concern that I would be one of those people that, when they opened me up, they would find something more sinister. They reassured me a million times that they didn't find anything except for the ulcer, which they successfully repaired via laparotomy (which meant that they had to do the work in my stomach through a big incision in my abdominal wall). 

What can I say about that week that I spent in the hospital? It was the worst, most uncomfortable experience of my life. Every five minutes I could click for painkillers (Hydromorphone). Four well-timed clicks in a row meant that I could sleep for a bit. My abdomen hurt so bad - nothing like getting your core ripped open to make you kind of want to die. I could barely move for days, so the muscles in my back were spasming painfully from being in the same position. A physiotherapist (who I had actually worked with before) came in a few times to give me some relief. They would have liked for me to get up and walk around, but of course, I couldn't because my knee was still hot, painful and propped by pillows. I had an NG tube going in through my nose, removing any fluids from my stomach so that the operation site would heal. I had a catheter, and my bowels had been put to sleep for the surgery. I had two IVs, because the drugs they were giving me couldn't be combined, otherwise they would interact badly. So for a few days, I hung in this agonizing limbo, suspended in time by tubes (that one time leaked stomach juices all over my bed and the nurses... fun!).

I harassed my nurses constantly to take out my tubes, my IVs and to let me get the heck out of the hospital. The first thing to go was the catheter, and gradually my bowels woke up too. This made things more frustrating, if anything, because now I had to shuffle painfully onto a commode to go to the washroom. I remember fighting with the health care aids, trying to get them to actually come and clean it out. Some of them wanted to line my commode with those blue absorbant pads, which I thought was disgusting and wasteful, so I refused to keep them in there.

My veins kept blowing the IVs, so my arms were functioning as a pin cushion more than anything else. For the first few days, I wasn't allowed any fluids except for being able to moisten my mouth with a little sponge on a stick, so my mouth was dry and tasted like death (often metallic in taste because of the meds).

My roommate wasn't exactly helpful to my healing either. He was constantly berating the nurses, complaining (sometimes about me, for nothing) and would poop his bed usually three times a night. So between the nurses and doctors coming in and pestering me to take blood or overwhelm me with too much information, my roomate keeping me up all night and the pain, I was not in the ideal situation for resting or healing.

I was emotionally wrecked, trapped in this miserable little shoebox of torment. Rosie and other loved ones had done their best to make my room look nicer, putting stuff in the window, sending flowers, magazines, a stuffed bunny. People wanted to visit me, but I didn't have the energy or the wherewithal to chat. I couldn't keep from wincing long enough and I just wanted to sleep. I was so grateful for one particular visit from Rosie, where she helped me sponge bathe and washed my hair in a basin while I hung my head over the end of my bed. At least I was clean and feeling a little bit more human.

With a couple days left in my stay, I was transferred to a bigger room with more people. I was hopeful about leaving, now that my tubes were out and I was down to one IV. I was trying to get food down, but I was feeling so much nausea from the medications (antibiotics, painkillers), that I started throwing up the night before I was supposed to be released. The next day I was keeping some food down (still throwing up some), and I was released. My parents had arrived in the meantime, so on Sunday, September 27th I was whisked away. We picked up some of my stuff at Rosie's house, went and got my prescriptions from the pharmacy (which was a debacle in itself, because there were mistakes in the scripts and when the pharmacist called the hospital for help, they couldn't find any record of my having been there for the last week) and my dog Louis and I settled in with my folks, where I expected to stay for the next six weeks while I healed from my laparotomy.

Oh, if only it would be that simple. But that's a story for another day.

Summer was over, and it would be for the next two years for me, anyways. I had hit rock bottom, and would stay there for some time. I wish that I could say that I maintained a positive attitude through all of this, that I was an untapped well of hope throughout the worst of my trials, but a dark cloud would hover over me for several months after my surgery. When people say wonderful things about how strong I am, I feel a little tug in my thoughts to the anti-social, grey winter of my life.

Do you ever find that you ask for something, ready to receive, but you don't get quite what you were looking for? I had asked the universe for time to explore, to learn, for new opportunities and a chance for change. I had learned to love myself and I was ready to embark on a journey. I had asked for time, and had gotten it. With a twinge in my stomach, I thought of what it would feel like to get back to my life and have nothing to show for it, for no greater good to have come of it. I resolved to use the time I was given as a gift, and I have tried to treat it as such as much as possible. That's all it means to be positive, after all: dwell more on the silver lining instead of the cloud, because, rest assured, both the positive and negative will always be there. We reap what we sow.

I leave you with my favourite quote: