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.
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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.
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ReplyDeleteHow the seton worked for you? The doctor placed me one yesterday during a colonoscopy when he found what is suposed to be a superficial fistula. He said to push the seton so it didn't stick. But mine is different i have 4 threads coming outside of my anus and no loop. When i push one, it hurts a lot and doesn't come an inch out. Don't know what to do
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