Endurance

I went back under shortly after the nurse spoke to me. There are no more memories of the post-surgical ward, where they watch you so carefully to make sure your body remembers how to breathe and pump blood and fire neurons and all the things that it might not be so crash hot at after however many hours of general anaesthetic. Eventually the machines attached to me and the observations taken by nurses came to an agreement. I was deemed fit to return to the land of the living. Continue reading Endurance

The first time

I was going through my old Tumblr to find my go-to chocolate cake recipe, and stumbled upon this… my first ever IBD-related blog post, I suspect. 25 May 2011. I thought I’d post it here for posterity. Those were the days… incredible pain on the daily, uncontrollable urgency, no painkillers, incapable of properly attending lectures. But also, relatively simple meds with less impact on my total system. No surgery, no steroids, no biologics. Not even my full-blown diagnosis yet. Anyway, without further ado, here’s 20-year-old Briar’s words about IBD:   Last December, after various fun filled tests, I was diagnosed … Continue reading The first time

magic juice – adalimumab adventures

I remembered that I am very nearly due for my next jab, and realised that I’m all out of meds. I’m not very good at maintaining a healthy array of fridgular options, but I can usually be depended upon to have a syringe or two of expensive medication tucked in between a Lush face mask and a block of Gouda on the edge of turning. *** Last time I picked up my Humira, I had the sudden thought that it’s the most expensive thing I ever put in my backpack these days. Two syringes technically cost more than my MacBook Air. … Continue reading magic juice – adalimumab adventures

curled-up flesh

Pain. Drowning  crinkle-cut curled-up flesh in whitest milk. Obligation lifts the cup, pours it in. No foil-wrapped magic tricks want to have anything to do with it; the capsule sinks below the surface before it can ignite. Flickers as a match might, but with the untiring power of the glowing ember. No end in sight. The worst days were better, because hope was still cradled that the broken parts could be cut away and mended, dead branches and grafts. But the poison is in the tree and eventually there will be nothing left but dried parts broken on the forest floor. All … Continue reading curled-up flesh

world IBD day

It is May 19th – at least in New Zealand, it is. On this day, the following things have happened throughout history Anne Boleyn was beheaded (1536) Nellie Melba, the soprano and namesake of a delicious dessert, was born (1861) Oscar Wilde was released from prison (1897) Pol Pot, leader of the Khmer Rouge and totalitarian dictator of Cambodia, was born (1925) André René Roussimoff, AKA André the Giant, was born (1946) Marilyn Monroe sang ‘Happy Birthday’ to JFK (1962) Tu’i Malila , the world’s oldest known tortoise died at 188 years old (1965) Jodi Picoult, Queen of Depressive Chick Lit, … Continue reading world IBD day

may 19th = world IBD day

So, when I googled purple ribbon this morning, it came up with a lot of stuff. Turns out, a lot of organisations are into purple as their colour of choice. Who can blame them? Purple’s grand. But today, purple belongs to US. Because, dear readers, May 19th (remember, I live in New Zealand, and we live in the future here) is World IBD Day, and therefore I thought it only appropriate to post a reminder/educational post about the ‘wonderful’ world of inflammatory bowel disease. Some of this may be stuff that I’ve mentioned before, but it’s all important, and all worth learning about. Everyone knows that cancer is bad, everyone knows that strokes and heart attacks and all of these (admittedly awful, don’t get me wrong!) things… but ulcerative colitis and Crohn’s disease are often relatively unknown.  So I’m here, as I frequently am, to educate, and remind you of this particular facet of health (or lack thereof) that can be so debilitating. In the words of Janis Ian (from Mean Girls) – it’s a life ruiner. It ruins people’s lives.

I could rattle off a bunch of facts from Wikipedia and other sources, but that seems a little pointless. You can look that up yourselves. But the ultimate thing is, as with most chronic diseases, there is no cure. You can go into remission. You can go into remission for years, decades even. Or, you can not go into remission. You can toss back myriad different drugs and treatments, and still find yourself a decidedly sick individual. You inevitably put up with comments from laypeople about diets, and avoiding this and that, and ‘oh, that’s when you can’t have gluten?’. Not really, no.

If you don’t suffer from IBD, you cannot begin to understand how infuriating this all is. As I know I’ve said before, if I could nip it in the bud by avoiding bread and the like, don’t you think I would? Trust me, I’ve tried. Sure, I avoid certain foods, because they make me feel even worse, but it’s not as if by cutting them out I somehow heal myself. That just ain’t the way it works. My go-to ‘oh god, my insides’ diet involves cutting out fruit, vegetables, anything super greasy, anything wholemeal or legumey, all nuts and seeds, dairy as much as possible, and probably more that I can’t recall off-hand. Sounds like the opposite of a diet you’d subscribe to to get healthy, right? Exactly. It’s not to make me healthy, it’s just to avoid additional pain caused by too much fibre, too much milk protein and too much fructose. It sucks, especially when you’re still trying to work off weight gained in your last course of prednisone. But it’s the way it is. Tell me to avoid gluten again, I will slap your pretty face with my slice of white bread.

Check out the picture below. Probably not best for squeamish stomachs. Continue reading “may 19th = world IBD day”