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
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.
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| 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.
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