After a pause to think a little, here’s a belated winter update on things with me.
As you will likely know from reading other posts – I was all set to begin my Humira treatment in October.
My last Crohns flare provided a familiar feeling of pure desperation that every Crohn’s sufferer will know all too well, and I saw out the summer grappling for solutions from my consultant. I just wanted help, anything to stop the bleeding and the fatigue. I was ready to become a patron of the self titled Quick Fixers Club, because I couldn’t turn the situation around by myself, or get a handle on what had caused it to get so bad again.
After a two month stint of heavy duty steroids, I was just waiting, (pending funding approval) for the pricey wonder injection – Humira. With the funding swiftly granted, and my appointment letter sat in my lap for my initial “loading dose” of four belly and thigh injections, something in me was resisting again and it was more than just my needle phobia.
I was surprised to discover that by Autumn; having weaned my buzzy bod off the steroids, I found myself feeling healthy, energised and even my poops were solid miracle nuggets of promise. I wondered, what if I could continue to ride this semi-simulated health wave that the steroids had left me with? Maybe I just needed to try a little harder to understand and overcome my triggers. Perhaps this time it could be different.
I felt pretty optimistic after lots of reading and blogging, discovering the incredibly encouraging health movement of functional and integrated medicine; and being part of a Facebook group of like-minded patients. I found that educating myself in the ways of auto-immune issues, cell health, gut dysbiosis and permeability, gave me a non-toxic faith injection which felt wonderfully potent. I couldn’t ignore all I had learned. I finally felt empowered by a better understanding of my disease, where before I had just felt clueless and at it’s mercy.
I called my IBD nurse to postpone my treatment. Predictably she wasn’t massively interested in my recent reading and perspective on auto-immune diseases. She, in the nicest way possible, made me feel like just another new age and sweetly naïve kiddo for suggesting that I might like to re-assess the environmental causes of my bodies confused immune system. She simply said ‘well if you feel well and in remission, we don’t need to start the Humira right now, the funding lasts 12 months’. So since that chat, I have been wishing on every loose eyelash I find, that I can overcome this thing and make my remission last an entire year without giving in to the heavy meds.
Since that conversation, I have doing a lot more thinking about the steps I need to take to stay well. I know that beating Crohn’s is a complex medley of things, and a recipe that varies from person to person. But every ingredient is essentially required, it must be measured and often takes a lot of discipline and awareness to see it through.
My current slow cooked recipe for survival, up next.