On learning of my illness, a yoga-teaching friend asked me, “What’s your body trying to tell you?”
Maybe I should listen respectfully to the ole body, I thought. It wouldn’t hurt.
So, we had a conversation. I had a thing or two of my own to say to Body, after all.
BODY: “Remember that stupid marriage you blundered into? The 16 years of sky-high stress? The consequent years of illness? It’s not over. It’s never over after my adrenals get hammered that long and hard. The damage is done and you must be aware of what’s going on in here for the rest of your life–if you want to HAVE that last third of your life.”
ME: “Got it. You have to admit, I’ve been pretty good to you: living on Maui for 8 years…now in peaceful Powell River…having lots of friends and a wonderful wolfy dog…organic food…doing the work I was born for. No complaining allowed! I do appreciate that the signals you’re sending now are serious-looking enough to motivate doctors to do at least something. YOU need to appreciate how blind the medical profession is and how hard it is to get the right tests done. Darned docs all seem to take the attitude that this kind of debility comes with age; so I should just put up and shut up!”
BODY: “Nothing gets them moving like a sky-high CRP score, it seems.”
ME: “Yeah, that C-reactive protein was a wowser. But their only answer’s prednisone prednisone prednisone. The patient’s response to prednisone is even part of their original diagnosis–how’s that for beginning backwards?”
BODY: “Thanks for the Omega 3s and the acupuncture, by the way. Brought that score down nicely, didn’t it?”
ME: “But I still feel terrible. And now that the CRP is a mere ten times as high as it’s supposed to be instead of thirty times as high, I’m afraid the docs will abandon our case altogether. Oh, there’s nothing more we can do for you if you won’t take the prednisone.”
BODY: “Why’d you think I sent you that spectacular dry-mouth-and-gunky-eyes session?”
ME: “You think I should have twigged right away to primary Sjogren’s Syndrome? Hey, I’m just a dumb lawyer, not a doc. Give me credit for stamping my little foot and insisting on the TPO test, even though I had to pay for it myself. That 802 thyroperoxidase score was the smoking gun. Or needle, I suppose—my inner arm looks as if a golf shoe whacked it.”
BODY: “I have more broad hints for you if you need them. No pun intended.”
ME: “No, no, that’s okay. I can see the signposts from the Sjogren’s location, okay? Lymphoma, scleroderma, lupus…I get it. And you know I’m onto the Endocrine Disruption thing, 24/7. Do you have any idea how hard it is to get an MD to HEAR those words? I might be speaking Turkish for all the understanding I see on their faces. As for ‘Adrenal Fatigue Syndrome’…I’m looking for an allopathic synonym to use so that they don’t label me a crazy.”
BODY: “So what will help you get them moving? This blood loss has to stop some time soon or I won’t be able to help. There can come a time when I can’t run the cancer–the cancer’s running me.”
ME: “I may need a little adrenaline when next I visit the GP and the specialist to confront them with western medicine’s spectacular misdiagnosis of my condition. Polymyalgia rheumatica, my left foot (which really hurts right now, at the metatarsal, by the way—could you stop that? Just for this afternoon? I’ll let you have some more cannabis tea, okay?)!”
BODY: “I want more greens. Every day. You’ve been lazy lately.”
ME: “Lazy? I’m exhausted! Thanks to you, I might add. Iron anemia, remember? Have you any idea how much bioavailable-iron supplements cost? Listen: I’m on the cancer thing. Yes, I know those cells have been getting away on you—I quit sugar, didn’t I? And even my beloved wine? We scoped the colon and the top half of the gut? I’ll push again for the small-bowel test and we’ll do that leaky-gut protocol together, okay?”
BODY: “Skip the damned iron. The you-know-whos love the stuff.”
ME: “Seriously? You just made my wallet happy. What else can I skip? Two dozen nutraceuticals a day—on $947 a month! Let me know, okay? What’s your email?”
BODY: “Keep the silver, vitamins C, D3 and E, and the Omega 3s. And that nice green tea, of course.”
ME: “Okay. But what about the anemia? Isn’t that why I feel half dead?”
BODY: “Convince a doc to jam a needle-ful of iron into you instead and we’ll see if I can do something about that anemia—provided you promise to spend all your new energy on fixing us and knocking the you-know-whos dead! Deal?”
ME: “Deal! So what’s your email?”
The diagnosis of polymyalgia rheumatica on March 7 (PMR) should have been Sjogren’s.
I was troubled by the fact that nothing in PMR addresses some of my symptoms: anemia, muscle weakness, periodic dizziness, dry mouth and eyes. Not to mention the recent neuropathy in the right arm and the fact that the pain did not go away as the CRP fell (It’s down to 34.2 now, from a high of 104—normal being < 3).
I was diagnosed with fibromyalgia and Sjogren’s in 1992. FM is another BS diagnosis, of course—it should have been hypothyroidism and Sjogren’s. I never thought much about the Sjogren’s because I conquered the dry-eye thing with colloidal silver and didn’t know there is more to it.
However, Sjogren’s can include every one of those symptoms, plus the PMR symptoms. The only un-included symptom is the blood in the stool. What this body is experiencing is full-blown Sjogren’s, and maybe something else.
Of course this is not the end or even the beginning of the end, Sjogren’s being another one of those mysterious auto-immune disorders whose necessary causative factor is not known. However, a lot more is known about its involvement with the endocrines than anyone seems to know about PMR. So perhaps this is the end of the beginning.
Probably the something else has to do with either the gut or the endocrines—liver or kidneys, possibly cancerous. All that iron I take is having no effect on the iron saturation or the anemia; so maybe there’s a cadre of cancer cells sequestering the stuff and using it to mutate.
I bought that new 10-year passport, however. I must have faith in this body.
Image is public domain.