Warning: I am not mincing words or curbing my tongue in this post. You are duly warned.
I have a story for you, the beginning of what might become a series, but this is the most recent in a long string of a medical bullshit I’ve faced over the years. Yes, this might be off topic for an author-artist blog, but I am a disabled author-artist so it is at least semi on topic, and it did lead to the art journal page shared at the bottom of this post, so there. 😊
Last week I went to my new primary care physician (my last one had been reassigned to doing home visits because of Covid). First though, a bit of back story. I am a complicated medical patient possessing a list of autoimmune conditions that come with neurological issues complicated by adrenal insufficiency brought on by years of steroids necessarily used to treat those issues. Before you ask, no, I can’t taper off the prednisone. Period. We tried and it laid me so severely flat that my neurologist used the words “possible coma” and “chance of death” then said I was not to try tapering again.
My appointment last week was only my second with my new primary care doctor (PCP) who from here on I’ll call Dr. W. At the first appointment, I was told a problematic place on my foot was a minor neuropathic ulcer (not illogical given that I have severe autoimmune-related neuropathy). I was given instructions on how to bandage the ulcer and prescribed antibiotics. So how does this relate to the second appointment? Why the story? Well, Dr. W told me to, rather accusingly at that the second appointment, to take off the type of bandage she had prescribed the month before. She also said that the ulcer had never been an ulcer but was only a callous. Ooookay. This set off my warning bells. I’ve had the displeasure of this change-midstream, blame-the-patient sort of doctor personality before, but I was determined to keep going since this was only our second meeting. Maybe I was misinterpreting her.
Next, and against my better judgement, I expressed some concern about some recent weight gain that had come on despite all my diet-related changes. Now, you’d think Dr. W’s response would be something logical and along the lines of, “Let’s check your thyroid levels” or something similar, right? Nope. “Gastric bypass. You need a gastric bypass.” Yes, she went directly there.
WTF? What the fuck? What is wrong with you, lady?
- We’re in the grip of a pandemic
- People with severe autoimmune conditions don’t fare well with drastic treatments. I’ve seen this firsthand on numerous occasions.
When I stated both the above to Dr. W, she backtracked but only slightly, stating that while gastric bypass maybe isn’t the option maybe the lap band (or whatever the term might be) is, but I probably had Cushing’s Disease and…
This is when my kickass champion spouse put Dr. W squarely in her place. “Secondary Adrenal Insufficiency means your body doesn’t produce much, if any, cortisol, which is the exact opposite of Cushing’s disease!” (Cortisol is the body’s stress and energy hormone. In Cushing’s Disease, you make far too much cortisol, causing weight gain. In Secondary Adrenal Insufficiency, you make little to no cortisol. Either can be fatal, though the latter can be more readily and quickly so.) Dr. W is the second doctor to make this critical error. When she was corrected, she proceeded to blame me, my dietary choices, basically all the defaults for my weight gain while tuning out all I had to say.
At this point I had all but shut down both verbally and emotionally because… Nope. Nada. I’m done. I have worked very hard to get past the negative voices and create a healthy relationship with food again (thank you, Noom.) Actually, my spouse and I are gluten-free ovo-vegetarians who eat a high fiber diet of approximately 1500-1700 calories a day give or take. We take very good care of ourselves. My spouse, in fact, has lost over seventy pounds on this diet while I, at first, lost thirty, and now I’ve not only gained that back and added an additional ten pounds, hence my concern.
Note: I am just shy of six feet tall and possess a large bone structure. I’m not a small person and large on top of that. It’s genetic predisposition. It’s the SAD (standard American diet) that I’ve been trying to undo for over fifteen years, it’s poor health… It’s a lot of things that aren’t easily undone no matter what I do, but I still try. That said, I take very good of myself, especially given my complex medical conditions, and have been complimented by numerous specialists for my efforts.
But the greater issue here, and the one that has plagued me into writing this blog post, is what Dr. W did to me emotionally. If I hadn’t worked very hard over the years to advocate for my own care I would have died twice, one of those times directly related to my adrenal insufficiency. If Dr. W wasn’t going to take that portion of my complex medical conditions into consideration then she would never take my care seriously, and this brought all the emotions related to those past fights flooding back.
We left my PCP’s office with my reluctantly agreeing to track my food for two months and to increase my activity, meaning steps by 1k a week… (by this time I’d given the hell up on talking to her so why not?) Long before we reached home, I was fuming. By that evening, I broke down in tears, filled by all the negative words I thought I’d overcome.
Five minutes with an ableist had torn my self-confidence to shreds, and I couldn’t let her win. This is when I kicked back into self-advocacy mode and decided what I’ll be doing:
- Call the medical practice and ask for a new PCP. It was only my second visit Dr. W and she simply isn’t a good fit. This is my right.
- I will track my food for the two months, but only three random days a week and only because I choose to. That said, after three days using the same app I have used for years, I can say with confidence that I’m still on the same dietary path. I still average the same amount of calories, fiber, and protein.
- I will follow my neurologist’s advice concerning my steps/walking: do what I am able to do as I can, which most days is 5-6k steps a day. Anything more tends to exacerbate my neurological issues (balance, tremor, myoclonic jerks, etc.)
Dr. W, like many before her, would do me more harm than good if I follow her advice. I don’t say this lightly but from a place of experience, from two events, one a fight specifically over testing for adrenal insufficiency/Cushing’s and a doctor’s refusal to prescribe the medication, prednisone, which I require to live, and the other a mis-prescribing of a medication that caused my nervous system irreparable harm, allowing quick advancement of the neurological manifestations of Sjogren’s Syndrome, an autoimmune disease.
So here I am again, researching Secondary Adrenal Insufficiency, this time as it applies to metabolism because I can’t trust my doctors to do the work themselves (Yes, there is a tie-in). If I had relied on my doctors to help me in the past, you wouldn’t be reading this blog post.
The body is a delicate instrument that needs a good technician. I maintain to the best of my ability, but my systems are simply off these days no matter my efforts.
My search of a good doctor or specialist in one field or another seems to perpetual and often frustrating if not exhausting.
First, do no harm. Whatever happened to that?