At Last… An Answer!

Doctor Learning EmpathyThe last time I posted, months ago, I’d been feeling optimistic about the latest doctor I was seeing at UCSF. He’d seemed interested and respectful, unlike some of the others. But then his tests came back without an obvious explanation for my abnormal brain MRIs and corresponding increasing debility.

He quickly became disinterested and dismissive. I’ll spare you the details. But it was depressing.

Not long after that awful, demoralizing appointment, I found a little cloth doll at a craft store. My immediate thought was, of course, “Voodoo doll!”

Then, the last time my friend Shirl and I were at our favorite supply shop, Dollhouses, Trains and More in Novato, I found a cute little stethoscope. It fit my voodoo doll perfectly.

One of the things the dismissive doc dismissed was the pain I described that feels like burning pins on the bottoms of my feet. Some days I can barely stand to wear socks. Or, come to think of it, even barely stand. He said it didn’t mean anything.

Empathy is an important quality in a doctor, wouldn’t you agree?

Teaching a Doctor Empathy

However, in spite of the “experts” at UCSF, I might now actually have a diagnosis.

Sort of.

I visited a dear friend last week. She mentioned she’d recently found an amusing 70s-style tarot deck among her late husband’s things. She was delighted to know that I like tarot cards. “Pull a few!” she suggested.

And this is what I got:

A Diagnosis

Hey, I said as I turned over the second card, “Those are nightshades! That’s really funny. I can’t eat those. I’m allergic to nightshades.” We looked up the card in the the guidebook that came with the deck. It helpfully explained that people who follow a macrobiotic diet believe these are basically poison, but most people can eat them just fine. (Except for Ellen!, we laughed.)

After that was a card that said, “What’s Happening?”

Then the final card said “I come from a different planet.” Hmmm…. The guidebook explained that my memories were erased at birth, so I don’t remember. But I’m actually a space alien.

I figure it’s as good an explanation as any. Don’t you agree?

10 thoughts on “At Last… An Answer!”

  1. How frustrating! And yet another doc to put in the sack.

    (The sack is the puching bag you use when frustrated with mediacl system – you always hit the right one ;-) )

    Actually your comment about your feet and doc dismissing the pain reminds me a lot of my father in law’s story. He suffered from what he called “foot piercings” for long years. He compared it to walking on knifes and it hit him hardest when he was trying to get some rest. It is hard for me to explain because it is hard for me to understand. He says work was not distracting him from work, the moment he was working the pain really stopped. And it would come back when he was trying to sleep or just take a break. This was dismissed as “only” psychosomatic and essentially they told him to snap out of it. For ages. Just recently he finally got a diagnosis, apparently he has a rare neurological disorder. His balance is really bad by now, because his feet don’t give him the right information on his standing and he is walking with aids. Nevertheless he is denied the German equivalent of a blue badge which would allow him to use disabled parking, because his disorder is not on the list of disorders for which it is issued, sigh…

    Well, that was our story. I hope yours will come to a better conclusion some time soon. Do you have any shots at another doc? SF was too far anyway, maybe some phantastic guy just decided to open a surgery closer to home? I’ll keep my fingers crossed for that. Sometimes miracles do happen.

    – And I love the vodoo doll :-) The white body is just fitting.

    • Hilke, I’m so sorry to hear about your father-in-law’s experience. It’s so cruel. Anything these medical people don’t have a quick and easy answer for is far too frequently declared to be “psychosomatic” or a psychiatric disorder. It’s unconscionable. From your description, it sounds obvious that it’s probably some kind of neuropathy, which is, indeed, excruciating.

      And to add cruelty to cruelty! He can’t get a disabled parking permit! That’s so horrible! At least here, you can get one based on symptoms and degree of debility, and not necessarily on the name of one’s diagnosis. Before I started using a cane all the time when I’m out, I used to occasionally get abuse (and many dirty looks) from self-righteous people who thought they were doing a good deed shaming the disabled placard “cheat.” They had no idea. The placard transformed my life. Without it, I’d be (and was) so much more housebound and dependent. To be denied that because one’s painful (and dangerous, due to risk of falling) disorder doesn’t have the right name on a list… That’s so terrible.

      I’ll actually be seeing yet another quack at UCSF later this summer. It’s a pretty off-the-wall referral, and so I’m not expecting much…!

  2. Yes! Empathy is an important quality in a doctor. So is listening and not being dismissive. I admire your restraint with that voodoo doll (since it isn’t beheaded).

    If you are an alien, I’ll build a rocket and get directions to your wonderful, bookish planet. You are the nicest alien I ever met :)

  3. Of course he was dismissive. If HE couldn’t diagnose it, it can’t possibly exist except in your head. Too many doctors consider themselves more infallible than the pope. Painful hemorrhoids to all of them. Painful and untreatable hemorrhoids.
    Disabled sticker? Thanks for the reminder. My doctor refused to give me one saying that if she did my partner might make use of it.
    Somedays I would love to come from another planet – but only if I could go home.

    • Thanks EC! I often think of the detailed hemorrhoid curses you proclaim for certain members of the medical profession. So fitting.

      I still am flabbergasted at your doctor’s attitude toward the disabled placard you obviously so desperately need. I guess the doctor has a need to prove to you that she’s not looking out for your best interests?!

      Indeed, some days being a space alien doesn’t sound so bad. Alas.

  4. Oh Ellen, I’m so sorry his doctor turned out to be a dud too. I agree you must be the most patient and lovliest person I know, given that voodoo doll is still in one piece. Perhaps that does mean you’re from another planet! :)
    I think you must be incredibly strong and I am completely in awe of that. You have so much on your plate and so little support, and yet your sense of fun and play always shines through. I am so grateful to have an empathic and persistent doctor, who always takes me seriously and although he has no miracle cure to offer, I always feel a bit better after my appointments with him. I don’t think I would be able to soldier on the way you do. You are an inspiration! <3 xxx

    • Greetings Amanda! So good to hear from you. I must say, many days I don’t feel all that strong. As for most of us, it’s more a matter of “what else can you do”. You just get on with it the best you can. I know things are tough for you too.

      I will say, though, dealing with all of these out-of-town demoralizing appointments without my old internist up here has been hard.

      Although, since we last had contact, there’s actually been some good news on the local doctor front. I have a new internist, and he’s not 300 miles away!. He’s made it clear that he’s too overworked and can’t help much, but he is willing to authorize the refills I need, and his staff even just got an annual reauthorization approved by my insurance company for an important medication I need. I’d been really scared over that one! And so I’m grateful for that.

      I’m also now seeing another doctor up here, aside from the internist. She’s a “holistic practitioner” I last saw several years ago. She left the area for a while, but now is back. She’s very good and has some interesting insight into some things. She actually was the only one savvy enough years ago to suspect I might have celiac disease, and got that diagnosed. It’s been such a relief to be in contact with an MD who knows me and has some sense of my actual medical history! And who isn’t dismissive. So I do have some local medical support now, which is very good!

      That said, I would still like to know what this (obviously progressive) disorder is that I have, and for that I need one of these quacks at a big teaching hospital like UCSF to take an interest. I’m at the point of realizing there might never be an answer, but at least I’ve tried.

      And I figure if one can’t find humor in something like this, one will go crazy. I think it’s a kind of art therapy…

      I am so glad you have such a supportive doctor. It does make such a difference! I do hope you are doing as ok as possible.

  5. Oh shucks…I thought from the post title that there really was an answer, beyond your being an alien. An answer that would make life on this planet more comfortable for you. Your last email sounded hopeful. What’s new locally on the medical horizon? Hope you’re having a good weekend. xo

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