I started this post over three months ago, and have been tinkering with it ever since, trying to find a single theme or focus and a way to wrap it up tidily. Instead it just keeps getting bigger and bigger. So I think it’s just going to be another multi-part post. Because I’ve got a blog and I’ve got something to say. Let’s get started.
They say stress will kill you, given enough time and enough stress. I’ve always considered myself to be a low anxiety, low key type of person, not easily ruffled, and nowhere near the stereotypical Type A personality one associates with chronic stress. And all of that is still mostly true, but I’m finding the stress is there, and yeah, it’s not the healthiest condition. I’ve been feeling lately like I’m turning into my mother, who was also a low key person, but as she aged, became someone whose anxiety could derail her. It was upsetting to hear during a phone conversation (she lived across the country from me), and not be able to help, or to see (during a visit) and become frustrated at her immediate redlining of anxiety and/or anger over seemingly minor things. Now I wonder if that these kinds of things aren’t totally under one’s control, and the aging process is a right bitch you have to get a handle on and ride to the end. But wait…
So I’ve been having a few epiphanies about stress and its role in my life. Until the past year, hell, until the past few months, I would have told you that I have little to no stress, am not the stressy sort, and other than a frustration or two during my day (say, a particularly crappy commute), I have no lasting stressors in my life and am not an anxious or tension-filled person. I am learning, via several avenues recently—epiphanies and research both—that I’ve been wrong for a long time. Maybe my whole life. Yes, I’m good at stuffing things, and keeping a calm demeanor. I am okay at letting some things roll off my back (or like to think I am). But still waters run deep, as they say. For many years (most of my life?) I’ve felt this could be my motto. I tend to run calm, stuffing stuffing stuffing, with the occasional acid-tongued blurt or outburst (which I regret nearly every time), until suddenly I don’t. Not healthy on any level.
The constant undercurrent of anxiety has been detrimental to my health, as I found out last year. And a December visit to the pulmonologist and my breathing tests are all running at the same less than stellar numbers as they were a year ago, some even a little worse. The test is stressful for me, so I wonder if that alone affects how well I do, but the visits to the doctor are stressful as well. After the last visit, where we discussed my test results and the recommendations for treatment, I realized that this doctor has zero interest in my well being. It was obvious before—I’ve joked that she only sees me as a pair of lungs, and not even very interesting lungs—but for some reason you keep on expecting something. Or hoping for something. As she told me about the gnarly drugs used to treat sarcoidosis, and my options therein, I broke down a little. I bowed my head to collect myself, and when I rose it to speak, voice quavering a bit, the doctor’s face was a blank wall. There wasn’t an ounce of compassion or caring there, just a clinical detachment and, as a result of this blank wall, the gift of my Aha moment – if your doctor doesn’t care about you, then stop going to see him or her. (Note: I didn’t expect anything special over my being upset, just an acknowledgement that it was affecting me.)
I took the 15 page printout she gave me about the medications she discussed home with me to read over. I’ve tried to read it all objectively, since I am not really interested in going on a chemotherapy drug (though at much lower doses than for cancer patients) that requires regular blood testing to make sure my liver isn’t being damaged by it, nor having every vaccine known given or boosted (because my immune system will be shut down by the drug). And because I’m not feeling at all confident in this doctor’s interest in my health (and will not continue with her regardless) and can’t imagine being on such a hardcore treatment under her supervision, I’ve kind of gone off the rails. Just so it’s clear, I believe the doctor’s knowledge, experience, and treatment protocol are solid, but I just can’t continue with a doctor who has repeatedly shown me she doesn’t care about me. Sorry. I know I sound like a big baby, but there are statistics to back up my feelings (more on this later). There really isn’t any gentle treatment for sarcoidosis, and most treatments involve steroids or chemotherapy drugs or anti-malarial drugs. And running in the background is the “ it often goes away by itself” noted on nearly every website search I’ve done (and indeed, was told this by my doctor early in the diagnosis process). What to do, what to do.
And lo, the path appeared. I happened upon a book whose title has been on a stickynote sitting on my nightstand for months (close to a year?). Something else I was reading at some point brought this title to my attention and it sounded interesting so I wrote it down. Finally, while doing some cleaning I saw it again, sticking out from under my alarm clock, and sat down on the bed and ordered up an ebook version from the library. Within the first 10 pages I realized I found something special, and maybe even the key to getting on track with real healing, not just treating to abate symptoms.
And this book led to another book. And then another couple of books came across my radar, and another, and suddenly I’m awash in research, none of it about sarcoidosis specifically, but about healing in general and healing myself in particular. And when I say healing myself, I’m not just talking about the sarc. I’m going down the rabbit hole to figure this stuff out once and for all. Because I can’t spend the rest of my life in a slow decline, feeling bad about myself, becoming smaller instead of better, and worst of all, never becoming who I’m meant to become. Never doing what I’m meant to do as I stay “safe” and afraid. This shit is real, and I’m diving in. Hang on! Because: