On sickness.

Somewhere along the way, I realized that with the exceptions of 1)this stupid incomplete class and 2)My program of study form (which is being held up by a committee member’s late input that she’d like me to take a different qualitative methods course than the one I’m currently registered) I’ve hit all the major milestones of the doctoral student timeline.  While I was checking off all the boxes and being an adequate-and-then-some doctoral student, I’ve made it through two colonoscopies, endless rounds of bloodwork, a horrible reaction to medication, and I’m on my third treatment plan. J wonders if I’ve been well during any of this time.

Anyway. I’m gradually concluding that chronic disease management has to be treated like a job. It took me three phone calls to get the doctor to call in a refill for a prescription (and I’m probably going to have to call the pharmacy again to make sure they fill it….this wouldn’t be the first time they just randomly decided to not fill my prescription because it’s expensive). I also need to be sure to call the specialty pharmacy in another state and let them know that I just used my last Humira pen, and they need to ship me a refill. 
Chronic stress leads  to chronic inflammation, and part of disease management needs to include managing my stress. And all of this takes time. 

I’ve recently picked up Toni Bernhard’s "How to be Sick" and it’s an excellent book. I particularly appreciate her observation that our thoughts and moods are like the weather- unpredictable, uncontrollable and fleeting. 

Anyway….I hate the internet conversations around Crohn’s. For example: 1 , 2, 3 .

I’m tired of hearing that my doctor doesn’t know anything, that Humira is a big pharma scam that’s going to ruin my life. Humira’s been a lifesaver. I like being able to get out of bed in the morning. I also worry that I’m going to wind up dying of cancer because of Humira (this is unrealistic, and I know this).  

I know the longterm prognosis for Crohn’s is pretty crummy.  I want to do everything I can to give myself my best shot. But particularly when it comes to diet, I don’t know where to start. I mean, I guess I do. It’s not going to hurt anything to try cutting out some of the more common foods that people are sensitive to- dairy, soy, gluten. But the thought of trying the Specific Carbohydrate Diet, or the GAPs diet (both of which have been recommended by family members who should know better) is beyond difficult. Primarily because both are heavily animal-product based diets, and I’ve eaten a heavily plant-based diet for the last several years. This is for a number of reasons, including health (I really want to do everything possible to reduce my risk of colon cancer. And hypertension runs on my dad’s side of the family), environmental reasons, and how animals are treated by the agricultural industry in this country, for starters. I’m somewhere between ovo-lacto vegetarian and pesco-vegetarian these days- I generally eat some high-omega 3 fish once a month or so.  I really do think that adding more animal products would introduce more risks than benefits. 

But what if I’m wrong? That’s the question hanging over everything right now. I’m using my best judgement (well, mine and my doctors’ and the pile of books I’ve read), but there’s so much that’s not known. And the stakes are so high. Cancer. Surgery….possibly having my colon removed and having to defecate into a bag. And no matter what I do, someone – most often a family member or a stranger on the internet- tells me I’m doing it wrong. Seriously- people in my mother-in-law’s prayer group have offered advice on my treatment decisions (the infamous "I know someone who cured their Crohn’s holistically" advice. For what it’s worth, Crohn’s can cause substantial intestinal damage without symptoms, and I really, really hope these people are continuing regular visits with their gastroenterologist). 

I have one degree in biology and another in public health. There is probably no one in this country better equipped to navigate this than I am, and I still find terrifying. I don’t know what the hell I’m doing. Sometimes I read studies or conference talks and I wonder whether the doctors have any clue what they’re doing.  The drugs that came on the market ten years ago transformed treatment….but what do we know about their longterm use? And yet, I have to agree with my doctor- it seems the risk of untreated disease is far worse than that of medication.

I’d like a break from being sick. A day without having to take medicine three times (or four, depending on whether it’s an injection day), to just eat or whether I’ve excercised enough, or if I’m too stressed out for my insides. A day like I see most of the people around me have almost every day (unfair generalization). 

The other people I know with Crohn’s seem to have things much more figured out, and to be much more at peace with everything….in spite of having to have major surgeries. They’ve had a few more years to deal with things – maybe time brings perspective? Or something.