The Blind Can’t See ~OR~ I’m Not an Elephant

I remember a little poem from when I was a kid.

 

John Godfrey Saxe’s ( 1816-1887) version of the famous Indian legend,
“It was six men of Indostan, To learning much inclined, Who went to see the Elephant, (Though all of them were blind), That each by observation, Might satisfy his mind.

The First approach’d the Elephant, And happening to fall Against his broad and sturdy side, At once began to bawl: “God bless me! but the Elephant Is very like a wall!”

The Second, feeling of the tusk, Cried, -“Ho! what have we here So very round and smooth and sharp? To me ’tis mighty clear, This wonder of an Elephant Is very like a spear!”

The Third approached the animal, And happening to take The squirming trunk within his hands, Thus boldly up and spake: “I see,” quoth he, “the Elephant Is very like a snake!”

The Fourth reached out his eager hand, And felt about the knee. “What most this wondrous beast is like Is mighty plain,” quoth he, “‘Tis clear enough the Elephant Is very like a tree!”

The Fifth, who chanced to touch the ear, Said: “E’en the blindest man Can tell what this resembles most; Deny the fact who can, This marvel of an Elephant Is very like a fan!”

The Sixth no sooner had begun About the beast to grope, Then, seizing on the swinging tail That fell within his scope, “I see,” quoth he, “the Elephant Is very like a rope!”

And so these men of Indostan Disputed loud and long, Each in his own opinion, Exceeding stiff and strong, Though each was partly in the right, And all were in the wrong!

MORAL: So oft in theologic wars, The disputants, I ween, Rail on in utter ignorance Of what each other mean, And prate about an Elephant Not one of them has seen!

………………..~~~~~~~~~~~~~~~~~~~………………..

So begins my blog post… there’s a point to this, sort of.

I went to the doctor today. It was an endocrinologist that I found online, someone who is reputed in his field, someone younger and more ‘up’ on current research. It was also someone who had more experience with adrenal insufficiency–a condition I was diagnosed with by another endo several months ago. In fact, I was diagnosed with it based on a three lab tests that all said I was cortisol low. I’ve been on medication for the condition and I feel better on it, not normal, not good, but better.

But this doctor, after spending over $300 today, tells me he’s absolutely certain there’s NO WAY I have adrenal insufficiency.

The rheumatologist I saw said I don’t have anything rheumatologically wrong with me. The new endo says there’s something endo wrong with me, but not what the other doc says it is. The PA I see hasn’t a clue what’s wrong with me, but she’s certain it’s not Q, Y or Z.

In the story of the little poem above, *I* am the elephant, which right now, is sort of ironic, since the endocronologist is trying to tell me that all my problems are because he seems to think I weigh as much as an elephant. That’s not entirely true, but it is sort of how I walked out of his office feeling. That’s never good.

My point is, I go to a specialist and he says, “It’s not anything to do with my specialty, ’cause the lab tests say so…” then the next doc says, “Nope, it’s not me…”

I DON’T WEIGH AS MUCH AS AN ELEPHANT, BUT…

They all are touching one part of the elephant and are telling me it’s this or that, but I have yet to find one single doctor who is willing to sit down and look at me, the whole elephant, and touch each part and look at each symptom and then send me in the right direction.

The new endo wants to send me to a cardiologist — even have an appointment with one on Monday — because he thinks the swelling and edema is, he says, probably related to the heart, liver or kidneys, and since the lab tests all say my liver and kidneys are fine, then it absolutely must be my heart. Because, you know, I’m overweight – so it can’t possibly be Addison’s or adrenal insufficiency, and since I’m fat, it must be the heart. All fat people are, you know, slobs and lazy and slothenly, have horrible diets and never exercise at all, so we sit around on our fat asses and just watch our hearts get weaker and weaker. Because we don’t ever go to the doctor to get treatment, and we don’t care about ourselves at all.

Screw the fact multiple doctors have seen me, listened to my heart, measured my blood pressure and even have a CT scan of my heart all of which say it’s completely normal, but no, no, since I’m overweight and my blood pressure is high half the time (ignoring the fact it’s super low the other half the time), then I absolutely must have a heart problem. Oh, and did I mention my blood sugar and cholesterol, triglycerides, and resting pulse are actually better than most of the doctors who treat me.

So I’ll go to the cardiologist and let him rule out congestive heart failure, the most likely of the problems, and rule out any other problems, and then what? Go back to this endo and shove it in his face and ask him to treat me now?

BLIND LEADING THE BLIND…

So this new doctor says, “Well, with your weight, the ACTH stimulation test might not be accurate…” and then he said that, “Maybe having been on the steroids, even though you were off of them for months before the test, the test wasn’t accurate…” 10 minutes later, he said, “I want to do another ACTH stimulation test…” Uhm, which is it – the test isn’t accurate for me or it is? Why send me to do anther $500 test when I have no insurance if the test isn’t accurate? He also wants me off my steroids, the only thing that has made life livable the last few months, and he said I didn’t need to bother weaning off of them. Everything we’ve read online says you do not stop taking them cold turkey — but then, he doesn’t think I have a problem with AI, so he figures no big deal.

When we tried, with tears in my eyes, to explain to him how miserable life is without the steroids, he said, “Well, I can see this is going to be a problem…” So now he says to stay off the meds for three days before the test, and then I can go back on them. Wait a minute.. a few minutes ago, he said the steroids from months ago might affect the test, but the steroids from three days ago are not a problem?

I’M NOT STUPID, DOCTOR SAYS SO

“I can tell you’re smart and you do your research…” he says. But I hear, “I can tell you’ve been reading on the internet and are trying to sway this to your favor so you can get steroids because they make you feel good.”

Then, to confirm my suspicions, he says, “Just because steroids make you feel better doesn’t mean your body needs them or that you’re low in them. You know, cocaine and heroin make people feel better too, but nobody’s body needs cocaine or heroin.”

Ah, so now I’m a fat, lazy drug seeker. Lovely.

SO WHY AM I GOING BACK?

At this point, I still think this guy might be the one who will help me figure out what is wrong. And you know why? Not because he cares or is listening to me, but perhaps rather because he’s not. I mean, if he’s so adamant to prove me wrong, then I’m thinking maybe I should let him try. Maybe that is EXACTLY what I need, a doctor who doesn’t believe a word I say and who will throw every test at me to prove me wrong. Because *I* know there’s something wrong and I know he’ll find it if I let him do it.

But the emotional aspect of that is not going to be easy.

I don’t know what to do.

I’ll figure it out, eventually, but right now, today, I’m somewhere between depression and frustration, anger and apathy. Tomorrow is another day, and apparently, anther doctor’s appointment and another $500 bucks, and another needle stick, and and and…

I just want my life back, is all. Is that really too much to ask?

Love and stuff,
Michy

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5 comments to The Blind Can’t See ~OR~ I’m Not an Elephant

  • WindowShopping  says:

    Here is the cogent point that I keep forgetting every time we walk into a doctor’s office: It’s an interview. It’s not an interview to see If you are fit to be a patient. It’s an interview to see if he or she is fit to be your physician. And the reason I keep forgetting that point is that I want, so badly, for them to be the right applicant, to be the one who is smart enough to figure out how to help you, to make you well, to give you back your life. It didn’t help that I was immersed in hormone soup during the appointment.

    I don’t know if he suffers from arrogance or if he was truly puzzled by the tack taken by other, previous physicians. I don’t know why he balked at answering my question about who should coordinate overall care of the many specialists who are becoming involved even though it was his suggestions to add yet another specialist to the list. I don’t know why he would say in one breath that a specific test was invalid because of certain inherent, ongoing conditions which have not changed, but turn around and order that same test in the next breath. And I have questions, now, in retrospect, after his pronouncement that other doctors have been blatantly wrong but he is pursuing essentially the same course…

    You are more than the sum of your parts. You are more than the sum of your test results. In the land of the blind, the one-eyed jack would be king! My kingdom for a one-eyed jack! And all the king’s horses and all the king’s men… still can’t seem to help us find a physician or team of physicians who are not blind.

    That being said… it is still essential, imperative, to believe, to hope, to put energy into health and function and capability! We must focus on what we CAN do to improve life everyday – THAT is where the cure really exists…
    Blessings, Love, and Light – L

  • Cindy  says:

    Michy,

    I know that this is insignifiant as compared to what you have faced, but let me tell you that it extends beyond you. I have been trying to lose weight for about 5 years. I’ve seen numerous nutritionists and doctors and they all say eat less and exercise more. To which I respond that I do not (regularly) overeat. I’ve kept food journals and measured everything that went into my mouth. To which the nutritionists say things like : well, this looks good, but what did you really eat…or “No one eats just a half cup of ice cream”.
    The constantly being accused of being a liar made me walk away and resign myself to being fat. It wasn’t until I found the diet plan that works for me (low-carb) and applied it that I began to lose weight. I hate to believe that you will be responsible for finding your own cure, but you might be. With Lynn and the others by your side, fight for the right to keep your steroids. Tell the doctor who thinks its drug-seeking behavior to shut the hell up that it’s not like you’re asking for narcotics. Be true to yourself and you will find the answer. Just don’t let the bastards rob you of yourself and what you know to be true. I did…and it wasn’t until I took me back that I started getting healthier.

    Love ya!

    • Mellie  says:

      You couldn’t pay me to igonre these posts!

  • […] my head, but also, I know there are others out there like me who are struggling with a diagnosis, struggling with doctors who don’t understand, struggling with family and friends who mean well but don’t ‘get it’… and […]

  • At My Wit’s End » Michelle Devon  says:

    […] with me. If you haven’t been keeping up, I’ve written more about the health stuff here, here, and here. We’re emailing the doc right now, at least, Lynn’s composing the email for […]

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