Ever since my Crohn’s diagnosis in 2005, I’ve felt like my medical team and I have been flinging cold-blooded disease predators at my body, only to have to then try to clobber the grisly results with mammalian heavyweights. Prednisone, 5-ASAs, 6-MP, three different anti-TNFs, bowel resection surgery. Which sometimes very quickly made my diarrhea, pain, fistulas, fissures, partial obstructions, rashes, and general malaise disappear. To then be replaced with moon face, extreme nausea and weight loss, weight gain, allergic reactions, dry mouth, constipation, blood clots, and 2 am ’roid rage/2:15 am collapsing in a puddle of tears.
So then naturally we medicate THOSE new problems (caused from either inflammation, medications, both, or who knows anymore), with laxatives, periodontic surgery and cleanings and dentifrices, antihistamines, more prednisone, exercising, not exercising, ankle air cast, different steroids, paleo diet, anti-anxiety medication, new cutting-edge anti-TNFs. And now I’ve added holistic medicine to try to make all of it better.
I had hidden in my back pocket that if someday I really pulled out all the stops and tried my best to feel better, that it would somehow magically, quickly all just get better.
For years, I didn’t dare even hope. In my 20s, I ate and drank and (not) slept and forgot about my medications as I pleased; at least I got to pretend I wasn’t sick, and just paid the price later. And I had hidden in my back pocket that if someday I really pulled out all the stops and tried my best to feel better, that it would somehow magically, quickly all just get better.
And it’s definitely not just all better. It’s all stop and go, lurching two steps forward then three steps back. But at least it’s changing, I am invited to think by my medical team. And on good days, I do think that. But with all this hope and energy directed at gorilla warfare right now, more than anything I feel really … vulnerable. Exhausted and excited and devastated and frightened and vulnerable, hoping and waiting for if/when my worst symptoms will go into a deep freeze.
Author Katie McLendon is a CCFA support group facilitator in Atlanta who was diagnosed with Crohn’s disease in 2005. She is a Certified Health Education Specialist with a Master of Public Health degree from Emory University, and works as an editor for the Centers for Disease Control and Prevention. Follow Katie on Twitter: @katiefmclendon
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