Pay no attention to the tumbleweeds. My computer had a mini-meltdown last weekend (oh, the stress of it – and stress is such a good thing for the digestive system) yet has miraculously returned to normal and I am still trying to catch up with my work. I have a lot of your blog posts to catch up on, too. Will start with that and hope to write up a post in the next coupla days.
That’s me. Today. And every day from now on for the next year.
It arrived pretty quietly, no big fanfare, just snuck in via some lovely phone calls, emails and gorgeous flowers. Cold and rainy outside, fridge is empty, husband is working. Darn, that means I have to get groceries, do a little housecleaning… strangely that doesn’t sound so bad. Everyday things can be oddly enjoyable when you aren’t panicking that you’ll need to drop everything and race off to the nearest bathroom. I had the panicky feeling constantly last week but today is all clear. It’s colon’s birthday too, I guess.
35 arrives with a bit of a thud because my biological clock is supposed to be ticking. SUPPOSED to be ticking. I say this because although I love kids, and feel the heartstrings start to sing whenever I hold a baby, I also kind of like my life the way it is and wonder if I could handle the insane upside-down-ness that would follow. I’m married to a lovely, wonderful man and we get along famously. We have a couple of cats and my colitis to keep us busy. And baby makes… six? Actually the cats are pretty low-maintenance, so… well, the colitis bit. Kind of a tricky math equation, that. When I think of the ordeals that pregnancy+colitis might bring, not to mention meds+fertility+colitis, then (taking care of an infant)+colitis, and of course while I’m at it why don’t I project my worries years ahead to (Christmas recital)+colitis=(-mummy) or (family vacations)+colitis, (any outdoor activity)<colitis… I might just keep putting off this whole business indefinitely if it weren’t for that number. 35.
I don’t think anyone is ever truly ready to have a child. They just have one and then get thrown into the crazy/scary/wonderful insanity of it all. But it’s even more challenging when a chronic illness can sometimes keep you from being your best. I now know brave women who have done it – Ali, Lottie and TNT Mama, I’m looking at you. If you see a spike in page views, that’ll be me, at 3 o’clock in the morning, trying to reassure myself.
Ultimately, my favourite formula for making decisions is to wonder whether I will regret my decision when I’m older. And I would most definitely regret not having children. So… there’s my answer. Right? …where is the Tentative Hopeful Smiley Face on this keyboard?
On another note, I am really happy to welcome everyone to my blogroll – I hadn’t actually realized I even had one until now, and I am so excited to see you all up there. Ali, Martin, Lottie, TNT Mama… and more to come I’m sure. Thanks to you all for connecting, and being honest, and hilarious, and heart-breaking. Even with a very supportive husband and family, this bloggy business has been quite the revelation for me. I love having met you all. Here’s to a year of health for all of you.
It’s funny when you look back and realize that you can pinpoint a turning point in your life. I’m sure there are many I will never identify, but it’s really neat to discover one and give it the credit it deserves.
I was in college and in the worst condition of my short life. I met a young man who was firstly (in my opinion) too young for me and secondly (again: just my silly opinion) too active and unknowledged to want to stick around once he discovered my high-maintenance low-mobility impossibly-sicky situation. So, naturally, I decided to make it the first thing I would tell him about.
Me: Actually I have a condition you’ve probably never heard of it’s called ulcerative colitis
Him: My best friend has ulcerative colitis
Me: (insert incredulous unbelieving wow-I-wonder-what-my-face-looked-like face here)
Anyways, said young man and I dated for a year, broke up amicably and are still friends over 10 years later (he came to my wedding!). His best friend, D, has become one of my best friends too. She’s a brave soul who developed ulcerative colitis in her teens and had to endure high school (that most cruel of microscopes, back when none of us realized that the world is a much bigger place) with IBD symptoms as well as medication side-effects that included weight gain and acne. How’s that for growing up fast.
When we first met, she was planning for surgery. Her options were limited, she had an allergy to the most commonly used IBD meds and was tired of the ordeals she was regularly put through. It was a brave decision for a twenty-year-old to make. I told her my symptoms and she insisted that her gastroenterologist see me right away. Within a month and a half I was sitting in his office, answering questions and getting bloodwork. The next day, he called me at home and asked me to come back to the hospital, because the test results couldn’t be right. We repeated the bloodwork, the results were the same. He called me and said, “how do you walk?”
That was the beginning for me. First of all, for someone in a medical field to acknowledge that I was really badly off. To start getting blood tests weekly (not appealing, I know, but it was comforting to know that I was being looked after). Frequent appointments, phone calls, follow-ups, colonoscopies, different medication attempts. Again, to a healthy person none of this sounds so great, but to me it was a revelation. Granted, it took me years to find my footing (and I’m still working on it…). I was sick for a very long time. Meds would start working a little, then I would slide back down again. I was (and continue to be) frequently disappointed when symptoms would get worse. My doctor and I have butted heads over the idea of alternative therapies (he’s a little too entrenched in the traditional ways of doing things, doesn’t much care for natural approaches, feels that I should be able to manage the disease with drugs and be able to eat almost anything, which I wholeheartedly disagree with) so I know what to seek from him and what to seek from other practitioners. But the gist of it is that I have him there. If anything goes terribly wrong, he’s my backup, he knows my history. And it’s all thanks to D.
p.s. D’s surgeries went well (but were painful to witness, partly because I knew it could be me someday), she has a j-pouch and although her tummy continues to be high-maintenance, her situation is far more controlled than before. These days she is living in another city, happily married, teaching elementary schoolkids, and still a wonderful friend. Thank-you D!!
It’s pretty weird in retrospect, being blissfully unaware that your body is mounting a full-scale attack on you from the inside. I’m sure lots of people with other conditions can relate.
It took a little while for me to realize that I was sick. When you’re really busy (and young, and blissfully unaware…) you don’t notice the little things your body is saying until it’s yelling at you through a megaphone. I knew something was wrong but I thought it would go away somehow. Ah, youth. Nowadays with my infinite wisdom and ridiculously high sensitivity for abnormal behaviour, I get the slightest little hiccup and I go on full alert. Back then, well… things got horrible. Fast. And I was completely inequipped to deal with it.
With frequent trips to the bathroom and the reappearance of blood, I went back to the doctor who gave me my first colonoscopy (sans anaesthesia, just to add to the experience) and proclaimed that I now had ulcerative colitis. No theories on why my symptoms had returned ten times worse than before the meds, or how the initial diagnosis of proctitis had advanced to ulcerative colitis. He was a surgeon, so he sent me off to an out-patient doctor because I wasn’t a candidate for surgery at the time. I didn’t get better. I got progressively worse, running to the bathroom constantly, feeling nausea, fever, cramping and fatigue throughout the day. I didn’t change my lifestyle or my obligations, I just felt really sick all the time. It still hadn’t completely dawned on me that this was a chronic illness that was with me for life and that it was up to me to help my body manage it. My doctor visits were predictable, unhelpful, discouraging – firm handshake, wrote down my symptoms, increased my meds.
In a matter of months I had lost 35 pounds and was using the bathroom easily 20-25+ times a day, often just because of the bleeding. I couldn’t remember what it felt like to go to the bathroom just to pee – I never lasted long enough for that. I was walking on eggshells all day: shhh, don’t wake the colon. I developed ridiculous coordination skills between my knees and my arms, anything to keep my stomach muscles from clenching on an elevator or when a bus suddenly put on the brakes. At night I would get into bed gently and slowly, remaining frozen in the same position to try and sleep – even so I got up almost every hour. My puppy dog thought it was great fun to leap out of bed in the middle of the night and run with me to the bathroom. It was the only bit of humour I could appreciate, as she stood in front of me, head cocked and tail wagging, wondering when we would do it again. My hair stopped growing, I stopped getting my period and the hair on my head started thinning and coming out in little clumps in the shower. I would fight sleep constantly and felt as though the slightest wind could blow me away. I thought that this was what dying felt like – a full shutdown of the body. In my weakened state I would go to the bookstore and read about inflammatory bowel disease, slowly realizing that my doctor wasn’t performing regular blood tests or doing the proper follow-ups, and that I was headed down the road to hospitalization and possibly surgery. I didn’t know how I was going to get another doctor referral and I felt helpless, frustrated and isolated. And sick. Really, really sick. It’s SO HARD to be proactive when you’re really sick.
That was over ten years ago, and that time period has become a barometer for everything in my life. I compare everything to it. If I can get through that, I can get through pretty much anything. When my internal whining kicks in and I wish I was ten pounds lighter, I remember how I felt when I was stick-thin and falling apart. When I feel unwell, I remind myself how incredibly bad it can get, and I try to appreciate how far I’ve come. I forgive my body all the time, for bleeding, for feeling weak, dizzy, nauseous… I tell it that it’s just doing its best, and I promise to help it get through. Yeah, my body has difficulties, but it’s the only one I’ve got so I’m going to take care of it as well as I can.
Feeling gloomy? Me too. Despite all-too-frequent setbacks, baby steps to wellness is next.
I was a pretty active 21-year-old; following an intense career program at a local college, working, and going out most nights of the week with friends. I didn’t sleep much and I probably didn’t eat very well either, not that any of my peers were doing it any differently. We were young and we didn’t care.
Then I started noticing blood in my poop. There’s nothing quite like blood coming from somewhere it shouldn’t to give your youthful delusions of immortality a swift slap in the face. My doctor sent me to a gastroenterologist surgeon who told me I had proctitis, which was a chronic condition I could manage with medication whenever it acted up, gave me a prescription for several weeks of medicated enemas and sent me home. I took the enemas with some embarrassment (little did I know what embarrassment really meant) and a month later I felt fine. Great, whatever I had, it’s gone now. Fixed and done.
A big problem that I have with the medical world is that often (in my experience) doctors don’t think that patients play any role when it comes to their own health. Oh, something’s bothering you? Here you go. Bye-bye now! As a young person without a lot of experience with health-related issues, I certainly didn’t help matters by not asking a lot of questions. To put things into perspective, this was back when the internet was still a new concept (gasp!) and my resources were limited to leaflets at the doctor’s office and visits to the bookstore. I wasn’t given the impression that what I had would seriously impact my quality of life, and as such I didn’t give it much thought. Whatever was wrong with me, there was a solution for it, so I didn’t really have to think about it. End of story.
Wrong, wrong, wrong. That came back to bite me in the ass in more ways than one. The first 20 years of my life had been governed by a set of rules that were all about to change. More about that on another post.
The idea’s been surfacing regularly in my mind… I’d say for over a year now. Yeah, I’m a slow action kind of gal sometimes. Cautious perhaps. Inflammatory Bowel Disease does that to you.
I remember browsing through a bookstore when I was younger – I think I was waiting on a friend to finish their shopping. I was leafing through a book of mondegreens and I fell upon “Lucy in the Sky with Diamonds” by the Beatles. The girl with kaleidoscope eyes… commonly mis-interpreted as “the girl with colitis goes by”. Hahaha, what on earth is colitis I thought fleetingly before turning the page.
It’s peculiar that I recall that moment because years later I was to discover exactly what colitis is, in all of its painful, embarrassing, and humbling fury. Lucy couldn’t possibly have imagined it, whether in the sky with diamonds or not. I named this blog for her, as a reminder to myself that things can be funny even when they aren’t. I won’t deny that I’ve suffered but I also know that this illness has shaped the path of my life, and I consider myself lucky to be here, right where I am. Discovering balance, gratitude and honouring my health. Hence, Lucky Lucita.