This post isn’t likely to make much sense. The pain caused by the autoimmune war my body has declared on itself is so over the top I reluctantly downed half a Norco (Vicodin with less liver-destroying Tylenol in the mix) to dull the fire then for good measure threw in the prednisone I skipped yesterday – prednisone barely keeps Eddie’s War from going nuclear – as I had to hold still for an MRI so the docs can take another stab at figuring out what exactly this dermatomyositis/ GVHD/ mess of a condition might actually be.
Of these two mind-altering options – pain and meds – pain wins the reality-warp contest hands down. Report pain to medical folks and they have you rate it on a 1 to 10. I of course developed my own calibration for the scale: 1 to 3 and it’s “Huh? what pain?” Count 4 to 6 and ok, I hurt, it’s maybe even irritating, but I’m coping. COPING! (That’s 6.) Hit 7 to 9 though and pain becomes the universe. It’s all I can think about, all I can see, all I can imagine. For the last 48 hours I’ve been stuck between 8 and 9, occasionally flirting with 9.5. (What’s beyond 9? Well, 10’s passing out.) The only mystery the codeine cocktail brings to the pain-drug dance are, a) whether it’ll make me puke, and b) whether I’ll care if I do.
I mentioned an MRI? I was expecting (hoping?) for a full-body workout, hair follicles to toenails, that would give ANSWERS. Instead I got an extremely detailed hour-and-a-half scan of my thighs. Hold on… reality check… my thighs? Seems the docs are still looking for the smoking gun of muscle involvement in this body-devouring horror thereby giving them their oh-so-coveted diagnosis of dermatomyositis which in turn will give me… Say, docs? What exactly will a diagnosis give me?
No one will tackle that question. All I get in response is mumbled medicalese to the likes of “ruling out metastasis” (cancer) and “finding the trigger” – “trigger” being code for the infection/ fungus/ tumor/ bad karma that started this civil war back in May. So, though I don’t really have thigh problems – any more than any other spot on my body – they got scanned because, being the biggest muscles in the body, maybe they’ll offer a better chance of finding something. They’re guessing, though docs never say so directly.
Even if they find “an” answer they aren’t likely to find “the” answer. I read the literature (to their stated approval and private chagrin) and I’m not seeing much that screams “fix” at least as far as quality of life goes, no matter what flavor of autoimmune decay they finally pin to my oh-so-sore skin.
I set up this blog to write about my experiences getting a liver transplant. I expected it to be a humorous and triumphant narrative of how the wonders and inconveniences of modern medicine conspired to give me another shot at life after liver cancer and the requisite choreography of medical and personal missteps.
Careful what you wish for, ducky.
Two stumbling blocks to that plan quickly appeared. Rather than a six-month detour until life resumed “nominal”, the transplant sent me down an neverending dark and stormy path straight out of a child’s horror film haunted by fiery dragons needing slaying and crocodiles to be turned into shoes and bears that must be baited off the trail with toothpaste tubes and yogurt cups. All the while being chased by all manner of flesh-eating bugs. (No groans, please: I warned you I’m on pain/meds; you chose to read this far.) That is not the blog I wanted to write.
And stumbling block two? I get really tired whining all the time. To rephrase: I’m sick of me.
This might come as a surprise – this blog’s called “Too Stupid To Die” for chrissake – but really: I was intending humor and profound thoughts, not the chronicle of a category 4 systems collapse.
Thus the Otto posts and the hummingbird chronicles and the photos, of course. But the hummers are adults now and only visit occasionally. Otto’s so distressed at my distress I’m making him sick. And my hands hurt taking a picture and changing a lens is a small torture . Wonderful.
Still, I when I can I like to turn my attention to something else. ANYthing else. At the moment I’m trying – between painful keystrokes – to finish up my first attempt at a sonnet (yes, the poem-type) about aliens finally getting here and scolding us for bad behavior. (Meds/pain, pain/meds, remember?) I’ll post it when I can’t make it any better.
I think we’re approaching “pain management” time. But that’s another post.
I’d better wrap this up. Puking’s looking less likely, but my fingers are stumbling all over themselves.
I’ll leave off with a Daily Funny, Personal Medical variety. Seems Brown+Toland, the local doctors’ medical group here in San Francisco, has informed my primary care doc that I am now considered a “complicated patient.” Complicated? MOI???
The experts juuuuust now figured that out, did they? Hilarious. It’s such a relief to know we have Authorities in charge, isn’t it? Just like in the government. And it’s so comforting to know they are on right on top of things! Paperwork, of course, will now ensue. I just better not have to fill it out with a pen. Not with these fingers.